A Breast Cancer Journey

Path Report

2011-05-03T08:05:00.002-04:00

This is the path report from my 4/18/2011 surgery. I still need to talk with the reconstructive surgeon about what this means, besides not cancer. I see him in about 5 weeks, and I think my question can wait until then. (click on the image to make it bigger and readable.)

Undeniable Pain

2011-04-27T12:05:00.004-04:00

I had breast surgery last Monday, 10 days ago, to biopsy a lump and to make cosmetic revisions to my right breast (or foob as I like to call it because it is a fake boob that comprises fat, skin, and blood vessels from my belly).

I saw the Surgeon's Physician's Assistant yesterday in Baltimore. Thank you Jim for escorting me and being my chauffeur, caregiver, and psychological therapist. My main complaint to the PA was pain. I have been working from the instructions the surgeon's office sent me about revision surgery, the same surgery I had in April 27, 2009. I didn't blog about the results of that surgery because that was when my life was out of control knowing that my beloved brother Les would die sometime that year from lung cancer. However, Jim's and my memory tell us that the April 2009 surgery was an easy, quick recovery that gave little pain.

The problem is that this last surgery was not just a revision surgery. It included what is called a revision of the deep inferior epigastric perforator (DIEP) free flap with the elevation of the inframmary fold.

I know what that meant, in terms of how it would look afterward. It meant that the lower portion of my right foob had no "lift" to it, as my left food does. The right was lower and far less "perky" than the left. I specifically asked for this revision. I wanted the two foobs to look pretty much the same. And because we were going in for that lump, while we were there, why not do a touch of cosmetics? A touch of cosmetics.

This is the description portion of the surgical report.

What my most marvelous, artistic, genius surgeon Dr. Chang did to accomplish this "lift", without explaining the process to me, was open my right foob along part of my pre-existing surgical scars, cut my foob away from the chest wall, move it north on my body 2cm, and then secure it down in that new spot by suturing the tissue to my chest wall with dissolvable sutures.

This part of the procedure was not close to the revision surgery Chang did in 2009 when he liposuctioned some belly fat to inject into my foobs to "round out" imperfections, which he also did some of this time. This, to me, was closer to the original DIEP free flap surgery in November, 2008. During that surgery, the surgeon held me in the hospital, including in ICU, for three days.

I didn't know about this process until yesterday. The surgeon basically rearranged the foob part of my body. Why wasn't I in the hospital for at least one day with heavy pain meds? Why did they send me home with Percocet, a drug that might be adequate for a minor sprain?

There are stitches holding my foob to my chest. No wonder my foob hurts like hell when I bend over. The stitch is being pulled then, and also when I try to stand up straight. Until my foob reattaches itself to my chest and those internal stitches dissolve, I should be assuming a shoulder hunched, belly bent position as I did for the 3 weeks after the original DIEF flap surgery. Why didn't someone tell me about this before yesterday?

Jim and I have been very confused about why I have been having so much pain from a "revision." I haven't been able to stand to cook. I haven't wanted to go out in the car to eat at a restaurant. Jim has been fending for himself with pixxa and sandwich joints, and I have been getting very little food because my caregiver doesn't do cooking. I have lived on boiled eggs, steamed spinach, and bread. Soup sometimes.

Now that I understand the anatomy of the pain, I am no longer trying to deny it. This is undeniable pain. Imagine--a very skilled and competent surgeon cut your breast tissue away from your chest wall, moved it north a couple centimeters, and then sutured it back to your chest wall. You would be horizontal for a couple of weeks.

That is what I now am going to be, for the next week or so. Meg, the PA, gave me a script for Hydrocodone, 1 2mg tab every 6 hours. I know from my former neighbor Nurse Mary's guidance on pain management that I need to layer this with Ibuprofen. I plan to put myself in Lala land (and that has nothing to do with Lantus) for the next week. I will be horizontal most of the time. I will rest and heal. I no longer will be denying the pain.

As for the lump? Meg told me the pathology was not yet available. It had been nine days. Did that mean that something was wrong? Were they asking for 2nd opinions from other pathologists? No she said. Easter. The holiday must have slowed thing down. Bullshit. Even though this is a religious (maybe Catholic) hospital, I has called and they were open on Good Friday. Then when I saw the surgical report, I freaked out. This lump came not from the belly fat or skin, but from the breast skin remaining after all the procedures. Fuck. Can breast cancer metastasize to the skin? I have never heard of that. But, crap happens.

The path was run this morning and that is when the report came back to the surgeon. I had it faxed to me. It is impossible to fully read because it has a grey background. (A readable copy is now in this post.) From what I can read of the diagnosis portion of the report, it says "no tumor seen" NO TUMOR SEEN. That means no cancer, right? That is consistent with last fall's CT and PET scan that found nothing unusual in that location. I asked for a copy of the report to be mailed to me. I will have my oncologist look at the report and explain it to me. I also will talk to Dr. Chang about it. I may ask for a 2nd opinion on the pathology.

I promised myself after going through yesterday that I will always be more proactive about my health. If I feel a lump, it will no longer take me a year to schedule an appropriate surgeon to take it out. I will call when I have post-operative undeniable pain. I will....I will...I will head to bed now because I took one of those hydrocodones. I must rest and heal. This week will now be another "blown" week. But it's Wednesday. Not much more left to this week. The horizontal position may continue into next week.

Please Support the Pink Ribbon Program in Wilmington, Delaware

2011-04-15T07:22:00.017-04:00

Update 4/16/11--Happy Sunday all. No additional donations yet. I hope the messages are getting through on Facebook to my friends and the Moving Toward Wellness group. I am going for breast surgery (lump and revisions) on Monday. I may not be able to send out emails before surgery.

Some accounting for you all. Sorry my "table" isn't prettier, but I can't get html to work.

Costs:

Pink Ribbon registration with course material and shipping...$935.90
Pink Ribbon stickers to put onto various materials......................10.00
Remaining budget to cover travel and food during training
...and other miscellaneous costs..................................................254.10
Total budget......................................................................................$1,200

Contributions:

Price reduction from the Pink Ribbon Program developer............(100.00)
Friend's pledges..............................................................................50.00
Total to fundraise...........................................................................$1,050

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Original Post

Dear Friends,

Some of you are aware of my breast cancer diagnosis and treatment that started five years ago. Only some of you are aware that I live with chronic pain as a result.

Part of my pain is in my chest and right arm, the combined result of the mastectomy, radiation, infections, and reconstruction. I will never be free of that pain, but I can reduce it by daily stretching and massage of the area.

I want to bring the Pink Ribbon Program to my area. It's a long story of how I got to this place on my cancer journey: months of diagnostics (doctor visits, X-Rays, and MRIs), chiropractic adjustments, physical therapy, treatment by a physiatrist (a medical doctor specializing in pain management and rehabilitation), and attempts at regular exercise at my YMCA and my local Wellness Community.

A common condition that women with mastectomies and radiation encounter is frozen shoulder. I had it, I got therapy for it, but I have to continue daily exercises or it will come back. That is because the therapy cannot "fix" the skin and muscle damage of the cancer treatments. It can simply move me to a point where I can tolerate daily exercises to ward off future occurrences.

And the exercises I have to do are not "general" exercises. Certainly, the cardio sessions in the pool and yoga and pilates help. A lot. But I must do "specialized" exercises that target the areas of my body that "freeze up."

I am not the only one. This is common among breast cancer survivors who had mastectomies or radiation. Those treatments damaged our bodies.

Thanks to targeted therapies, women and men with breast cancer are surviving longer. But with longer life comes late effects from the treatments. The healthcare community has only recently come to recognize those effects. Now it is time to focus on treating those effects. Or at least to bring the knowledge that does exist about treating those effects to a broader group of survivors.

And it is my goal to spread that knowledge in my local community: Wilmington, Delaware, and surrounding areas.

I have joined with Karen Feeney, my chiropractor and a personal trainer at my local YMCA, and Fa Lane Fields, a survivor with late effects much worse than mine who is starting up a cancer support group at the same Y, to bring the Pink Ribbon Program to our area. We want to bring the knowledge of that Program into our community, especially into the Y, to move breast cancer survivors toward wellness.

Thus, we have created Moving Toward Wellness. We have started a Facebook group that all are welcome to join. We hope that area breast cancer survivors and those concerned about breast cancer survivors will join the group to follow our efforts and to spread knowledge about wellness opportunities.

I have created a poster about our effort to fundraise for the Pink Ribbon Program training. I ask you, my Facebook friends, those who read my Blog, and others that I contact with the link to this post, to help me with my goal by contributing. Information about donating by PayPal or check are in the poster. If you can spare even $5, that will get us on our way. Many hands make small work.

Thank you for reading my appeal.

It's been 4 years, 2 days...

2010-01-18T07:08:00.004-05:00

...since my breast cancer diagnosis. I'm thinking---WOW! I was determined to beat the cancer, but I never thought about sitting here looking back over four years of treatment.

I carry many scars. Physical and emotional. I still consider myself a cancer patient. In some ways, I've gotten stuck there.

Chemotherapy left me with neuropathy in my feet, legs, and fingers. Many patients get neuropathy, but most get through it in about a year post-chemo. The neuropathy limits my standing, walking, and squatting.

My chest is a mass of scar tissue. A gifted surgeon in Baltimore was able to relieve much of my discomfort with a DIEP Flap reconstruction. But the restriction remains.

And the cramps puzzle me. In my feet, legs, back, axilla, and chest. I am hoping it is a side effect of the Tamoxifen, but it might be my fascia reacting to the scars and neuropathy.

I have gotten over the blazing white anger I had with Dr. Boob for his flawed surgeries. In fact, I have very little anger toward him. I thank my therapist for that.

I have gotten over the disappointment that Jim wasn't more available to help during my treatment. I came to understand how sick he was, and am just thankful that I still have him. In fact, he is doing great! All his liver values are normal, he has had both knees replaced, and he goes to the YMCA for cardiovascular and strength work 3 to 4 times/week.

I am thankful for all the friends who gathered around me (in spirit mostly) during my treatment, during Jim's illness, and even now. They lift me up in so many ways.

The past 4 years have been quite a roller coaster. There is a door closing behind me. In front of me is the same world, but seen in such a different way. Life is fragile. I have lost four cats and one brother since this started. Cancer took four of those lives.

I have also lost friends that I made on the journey, also to their cancers.

And I stand here, a survivor but afraid to call myself one. I have lost the excitement I had for life before this began. I am afraid that if I embrace life, it will once again try to crumble around me.

(PS. As a little walk down memory lane before I posted this, I reread the thread on the FDMB where I announced my breast cancer. Such support. Thank you all.)

Les's Obituary

2009-11-13T12:39:00.002-05:00

Leslie Martin “Les” Wood, 53, of Beckville will be held at 2 p.m. Thursday, November 12, 2009 at Hawthorn Funeral Home Chapel. Mr. Ricky Simmons and Mr. Trevor Wells will officiate. Burial will follow in County Line Cemetery. Services are under the direction of Hawthorn Funeral Home. Mr. Wood died, Sunday, November 8, 2009 at his home in Beckville.

Mr. Leslie Martin “Les” Wood was born January 12, 1956 in Leavenworth Kansas. He was the fifth of seven children born to the marriage of Vernon Meyer and Audrey Maxwell Wood. Les was raised and schooled in Indiana graduating from Norwell High School with the class of 1974 and later attending University of New Mexico. He married Donna Kay Britton May 15, 1979 and together they celebrated 31 years of marriage. Mr. Wood spent his career working in the oil and gas industry. He is preceded in death by his parents.

He is survived by his loving wife, Donna Wood, of Beckville; daughters, Stacy Britton Pierce and husband Danny, of Carthage and Nicole Britton Kelley, of DeBerry; brothers, Vernon Wood, of CA, Robert Wood of, Albuquerque, NM, William David Wood and wife Kathy, of Virginia, and Gary Wood, of Bluffton, IN; sisters, Venita Wood and husband Jim Davis, of Delaware and Connie Miller and husband Jerry, of Bluffton, IN; five grandchildren, Deven, Ashton, Dawton, Ethan, and Martin; numerous nieces and nephews and a host of friends.

Serving as pallbearers will be Rex Dodd, Tom Partain, David Stubblefield, Dale Mullins, Garnet McClure, and David Blackwell.

The body will lie in state at 6 p.m., Wednesday, November 11, 2009 and the family will receive friends from 6 to 8 p.m. Wednesday night at Hawthorn Funeral Home.

My Memorial to Les

2009-11-10T12:23:00.001-05:00

I am sad. Very sad.
My brother Les is gone.
I have lost my treasure.

But no, only his body is gone.
Now his spirit is my treasure.
Always.

Les holds a part of my heart that is his alone.
I will share with him my heartaches and joys.
I will share with him the wonders of the physical plane,
and he will share with me the wonders of the vastness.
Les and I will hold each other close.
Always.

Les will live forever because his will is forever.
Les will live forever because his friends and family will always hold him close in their hearts.
Hearts that beat continue spirits that live on.

Dearest Donna, Stacey, and Niki,
and all the endless others who also love Les,
your hearts cry.
Your hearts are ravaged.
Your hearts feel things that you never could imagine.
Yet, your hearts will endure.
That's what true love encourages.
That's what hearts do.

I will always have my treasure.
And you, also, will always have Les.

A link to Les's Guestbook on Legacy.com. It will only be there for a month.

Les is Gone

2009-11-09T16:25:00.002-05:00

I lost my brother on Sunday morning, November 8, 2009. He died in his sleep and without pain.

Les Update 10/18/2009

2009-10-20T08:39:00.002-04:00

So sorry info has been so long in coming. Denial on my part.

This will be brief. I have been in Texas twice this Summer, once for two weeks in July when Les's cancer was diagnosed metastatic and once for two weeks in September when Les's medical oncologist told him he wouldn't live long enough to make an application to M.D. Anderson, the cancer center in Houston.

It's been a horrible ride for Les and his wife Donna. Les has been such a trooper, insisting on treatment. Treatments that leave him weakened, in pain, and unable to eat. Donna is a walking emotional breakdown.

During my visits there were some rough times. Some were because of emotions; some were because of Les's physical condition. One emotion coming from Donna that I truly don't understand is her jealousy because of the relationship that Les and I have. Donna, I am not competing for the affections of your husband. He is my brother. He is the one who was supposed to always be in my life.

I left TX in September because Les was in the hospital, recovering from a bowel resection. The lung cancer had perforated his bowel and given him very painful peritonitis. My roll had been to chauffeur him to treatments and appointments, so there was no need for me to stay at that time. I believe the worse night of my life was spending the night in his hospital room with him screaming in pain, before someone had the good sense to ask for a surgical consult.

Les and I said our final goodbyes in that hospital room. That was about a month ago. Last I heard he was back in the hospital again, for vomiting and dehydration, and an elevated white blood cell count. I last spoke to him last Thursday (it's now Tuesday) and he said that if he had anything to tell me, he would call me.

There are two reasons I suppose he did that. First, he's tiring of giving the same bad news to everyone. Second, he wants to spare me the gory details of his death.

I have joined two cancer caregiver support groups, one a face-to-face meeting and one online. Both with The Wellness Community. Those are weekly meetings. I also have my bi-weekly women's cancer support group; the members there are very empathetic to my pain about losing Les.

I'm OK. Constantly toying with whether I should go back onto antidepressants. I am not sleeping or eating well.

Holding Steady

2009-06-20T23:05:00.002-04:00

Les almost had his brain surgery on Friday (yesterday). Wednesday's blood tests showed acceptable platelet and WBC counts. But then the platelets took another dive on Thursday. So now it's a day by day thing. A Tuesday surgery, based on Monday blood test, will be the first opportunity next week.

Les's home health care agency has finally delivered the needed durable medical equipment--a hospital bed, wheelchair, and walker.

Les has been working with his elder daughter Stacey, who has an accounting degree, to get all his financial paperwork in order.

I've been scanning through Kubler-Ross's death and dying books to see which might be appropriate to send to my Texas family.

The Hits....just keep on coming

2009-06-17T01:29:00.001-04:00

Les's PET scan shows cancer in his stomach, pancreas, and chest cavity, as well as the tonsils and brain. His white blood cell and platelet counts are too low for him to have the brain surgery this week. Over the next couple of days, the DRs will be talking about treatment options.

The only good news we have is that the cancer in his tonsils is squamous cell, not metastatic lung cancer. We are just assuming the rest is mets; no biopsies have been done.

Les Update--Thursday

2009-06-12T09:46:00.002-04:00

I have been talking to Les daily since the DX of mets. He intends to fight, but is very emotional about this setback. He has come home from the hospital with steroids to reduce the inflammation in his brain, an anti-seizure medication, and Ativan for anxiety.

He has a PET scan scheduled for Monday to determine whether the cancer has spread elsewhere. Depending on the results of that scan, Les is scheduled for surgery to remove the cancer in his brain on Friday, or Wednesday if the surgeon can move around his schedule. Les would like to find a surgeon to remove the cancer from his throat at during the same surgery session.

Les is starting home-based physical therapy, primarily to address the paralysis in his right side. The therapist will be working with Les's insurance company to get him appropriate durable medical equipment. So far on their list is a walker with a support for his right arm, a wheelchair, and a hospital bed.

Les's friends are showing up to visit, and I understand these visits are pretty emotional. My brother Gary from Indiana arrived at Les's on Thursday. My sister Connie, also from Indiana, will arrive there probably Monday.

I will go when I am needed. I talk with Les everyday, and he thanks me for that.

Les is my second best friend in the world, after Jim.

My Heart is Broken

2009-06-08T18:56:00.002-04:00

I spoke to Les yesterday afternoon, and he was experiencing right side paralysis from the chemo/MS combo. He couldn't talk long; he was too fatigued.

He called today. He is in the hospital after experiencing three seizures later yesterday. An MRI this morning revealed he has cancer in the motor function portion of the left side of his brain. The paralysis is being caused by the cancer.

Last week, Les had a tissue sample for pathology taken from his throat because he has been bringing up bloody, loose tissue. Donna, Les's wife went for the follow-up appointment today. Also cancer.

Les was crying. It is the first time through this entire ordeal I have known him to cry. Until now, he had hope for survival. His lung was removed; only one of the 40= lymph nodes removed during the surgery was cancerous. He has followed every treatment boulder they have hurled at him.

When I asked Les whether he needs me there, he said "not yet." Jim and I are planning to cancel the reservations for our fall cruise. I will not make plans to attend Linda Lee's wedding. Jim's knee surgery is next Wednesday and, if need be, we can find others to caregive for him. I need to see my brother....alive.

I love you Les. I am so very sorry.......

I am not at Room Temperature

2009-06-06T08:16:00.002-04:00

I was properly chastised this week by my friend Libby for not updating the blog after my last surgery. I told her that I hadn't felt like sitting at the desk computer to type a long update. Libby replied that all I had to type was "I am not at room temperature."

The surgery went very very well, and I've already had two follow-up visits. The surgeon was able to resolve the last of the area where my skin was adhered to my chest wall. Consequently, except for the tightness from internal scar tissue, I have full range of motion in my arms. Not that I will ever play volleyball again.......

My foobs (or flaps, whichever you wish to call them) are reasonably symmetrical and well placed on my chest. The surgeon wanted to "diddle" a little more with them, but I told him he had accomplished my objective, and maybe sometime in the future, but for now I am THROUGH WITH SURGERY!!

The revision to my abdominal area added three inches to each end of my scar (removing "dog ears") and large black bruises on my butt (from the liposuction).

I am now where I hoped to be in February 2007. Finished with surgical revisions and whole. I will have the nipples tattooed on August 31. That's an in-office procedure done with lidocaine.

I have been cleared for exercise and swimming.

Thank you Dr. Bernard Chang, reconstruction surgeon extraordinaire!!

Emma Leah, August 15, 2008 to May 30, 2009

2009-05-31T09:25:00.015-04:00

Emma Leah came to live with us on December 5, 2008. I introduced her on the FDMB as the perfect kitten--she likes people, she likes cats, she eats well, knows where to poop and pee, alert, attentive, smart, and cuddly.

But sometimes, God needs the babies. She left us yesterday, in organ failure, likely from dry FIP.

Emma loved the other kitten adopted with her, Casey. Despite their size differences, they ate, slept, and played together.

Emma started to become sick shortly after her second FeLV vaccination. She stayed with us another 10 weeks, but she was different, and as time went on, we knew she was sick.

So we will try to remember the three brief month of health she shared with us.

Emma Leah fully embraced her scratching post, making it a jungle gym as well as a place to get manicures. She was very careful with her nails, never using them on people or other inappropriate items.

Emma was just getting to that stage of growth where her tail lengthens to adult size, and she would have to grow into it. She used her tail to converse, to play with Casey, and to wrap precious self.

Emma loved to cuddle for naps. This was often my view of her as she took to my lap.

She would jump onto my back when I cleaned the litter boxes. She would join me in the shower, staying safely on the tub edge behind the clear vinyl shower liner. She made the orange kitty bed I got for Casey her own, and her woolie, nursing on it unrelentingly.

Emma was the ultimate explorer of all things permitted (and early on, unpermitted). Here she is trapped in Jim's shower.

Emma often slept under the covers with me, in my armpit, at my waist, or behind my knees. Many night I fell asleep sitting up, and when I awoke, there she was on my lap.

She loved to eat. She made a game of running to the feeding spot at meal time, and always made sure she shared everyone else's plates.

Her favorite toys had feathers on them. She fancied herself quite a birder.

She was a little overwhelmed by Ennis's massive size, and would gentle push him away, or leave the bed, when he came to close. This is a rare picture of the two of them together.

Upcoming Surgery, and Other Things

2009-04-13T08:25:00.003-04:00

I received my surgery packet last week. My surgeon's office is nice enough to send out a packet with info about the surgery, as well as preparing for it and recovering from it.

This surgery is called "revisions." The surgeon will be "sculpting" the two breast mounds for symmetry and placement, adding fat to fill in a scarred area in my right foob that is "wrinkly," liposuctioning the little bulges at the ends of my abdominal incision, and making nipples.

The surgery starts in Baltimore at 12:30pm on Monday April 27, and I am expected to be released from post-op recovery around 4:30pm. Depending on how tired/disoriented Jim and I are, we may try to find a local hotel for the overnight instead of driving the ~2 hours home.

I have to go to my family doctor this week for a mini-physical, an EKG, and orders for bloodwork. Information in the surgery packet tells me I will be down for about a week, and on activity restrictions for three weeks.

This is the last procedure planned for general anesthesia. I am very happy about that. The anesthesia really knocks me out....for days now.

Jim is planning to have his right knee joint replaced in June, and then we have planned a 9-day cruise for September. We will be taking a ship out of Bayone, NJ, up the east coast into Canada and back.

I was away for a week recently, in the DC area caring for a friend who had been released home after 3 weeks in the hospital for peritonitis. I feel this is one of the ways I can "pay it forward" for all the care others have given me through my journey.

Emma, one of the new kittens, worries me. She has a fever of unknown origin that has been going on for almost a month now. She is going back to the vet today for another check-up. She has lost weight, isn't eating well, and is very lethargic.

My brother Les is being such a trooper through his lung cancer treatments. This is his final week of first-round chemo and radiation. He is having alot of trouble swallowing, because the radiation is affecting his esophagus. But he is happy that the end is near. I talked with him on Saturday, when he was out buying a bunch of flowers for the yard. You have to feel somewhat OK to garden.

That's all the news.

More on Les

2009-04-05T10:30:00.002-04:00

Les is so upbeat about all of what he is going through. He has only two more chemos scheduled (his chemo combo is Taxol and Carboplatin) and only 9 more radiation treatments. He still has his hair, was feeling "like shit" the Tuesday and Wednesday after his Monday infusion, but recovered (as much as possible) by Friday. He also is having throat problems from the radiation treatments, but a DR prescribed magic mouthwash, which did wonders for my mouth sores. He also has not smoked since his surgery, and is repulsed by the smell of cigarette smoke.

Good for you Les. I love you bunches.

Update on Les

2009-03-13T10:49:00.002-04:00

Some more info about Les's lung cancer. He got a report yesterday that said his lung cancer is non-small cell carcinoma, Stage IIIA. Les has not done research about prognosis, so I will not put what I know about it here. If Les doesn't want to know, I don't want to be the one to force it onto him.

Les is in remarkably good spirits. He has worked some, but it is physically difficult for him. Any time spent at work means the entire following day is spent on the couch.

He has been measured and marked for radiation and begins it today. He will have radiation every weekday for 25 session. He also will be getting chemotherapy during the time he is on radiation therapy. Les doesn't know the "flavor" of chemo. He will an infusion every Monday for 5 weeks, then an infusion every 3rd Monday for 4-5 months.

Reaching out to Kathy

2009-03-07T12:12:00.004-05:00

I have a friend on the FDMB (let's call her Susan) who has a co-worker (let's call her Kathy) who has breast cancer. I've offered through Susan my contact information, but I'm told Kathy is a strong, independent person who doesn't reach out for help for herself. She is a single mom of one son, and is being cared for by her parents.

So I told Susan I would write something up to converse with Kathy. I thought my breast cancer blog would be a good place to put this.

Kathy,

I, like you, have been diagnosed with breast cancer. I am about 3 years post-DX, but still living with the effects of my diagnosis and treatment every day. I have made part of my cancer journey helping others with their cancer journeys, in whatever way I can.

Susan tells me you have been in severe physical pain from the treatments. I understand that. The chemo, and the Neulasta that I got to stimulate white cell production, put me in a world of hurt. Nothing nothing NOTHING made me comfortable. Even lying brought pain to my hips and ribs. And the pain made me the crabbiest person ever.

Yes, crying. Crying is a part of the pain (and other things).

For my first two infusions, I didn't know that there were ways to manage that pain other than the prescription pain killer I was given. My neighbor Mary, a nurse, showed me how to layer prescription meds with over-the-counter meds. I talk about the process I used here. Of course the pain wasn't gone, but it was very well masked. Kathy, talk to your doctors or the oncology nurses about better pain management. It is possible.

Susan tells me you are a fiercely independent woman and that being dependent on others is the hardest part of your journey right now. Might I suggest you take a brief look through your caregivers' eyes. Your parents are doing what they are doing out of the purest and most sincere love. Think of the fear in their hearts, when they think of the situation you, their daughter and the mother of their grandchild, are facing. Think of how they just want to hold you and take you pain and fear.

Kathy, please take a break from your independence, just for the time it takes to get through your treatment. Cherish the help that your parents and others are giving you on your journey. Your willing acceptance is a gift to your caregivers.

You will regain your independence in time.

Kathy, you are going through a process that will likely radically change who you are. I have known many people say they are glad for having gone through the experience of facing and fighting cancer. I am not one of those people; I would have much preferred not having to face and fight cancer.

But I am glad to have learned some of the lessons I learned and met the people I have met along my journey.

We can talk in the future about some of the things I have been doing to reclaim my balance and my life post-treatment. Maybe I will have some nuggets that will help you get back to a comfortable place. For the time being, though, for the treatment phase, my best advice is to let the current carry you, try to avoid the rocks, and grab for every life ring someone throws you.

Take care, and stay strong.

Venita

PS: My offer of an email or phone relationship is always open.

A Place Called Today

2009-02-24T16:17:00.000-05:00

Lori recently sent this to me.

A Place Called Today

There is a place where I have found great peace. I don’t visit it as much as I should. It is a place called Today. In Today, I often have no problems. If I do have problems, there are usually no more than one or two. Interestingly, these problems are fixable. I have the tools I need right before me. Action can be taken. Today is run by a benevolent king named I Am. I Am seems to give me everything I need just in time. He is the eternal Present.

Unfortunately, I am often in a place called Yesterday. Yesterday is a frustrating place to live. There are a thousand little suburbs of yesterday stretching back as far as the eye can see. Each Yesterday has one or two of its own problems. These problems prove impossible to fix. I ponder them endlessly. Even when I dream up a solution, I don’t seem to have the tools I need. Yesterday is ruled by two evil parties, Remorse and Resentment. They are constantly taxing me with old problems, yet providing no answers.

Sometimes I get sick of the crowded conditions of Yesterday and venture into the wilderness of Tomorrow. The wilderness of Tomorrow is an infinitely vast place. There are no roads and it is very easy to get lost. There are millions of little trails that lead to Nowhere. There are billions of problems here also. They are supplied by Imagination. Imagination mixes the problems of Yesterday and Today to come up with an endless supply of new problems. There is a ferocious beast that prowls the wilderness of Tomorrow. Its name is Anxiety. It is always watching and pounces at will. The only way to escape it is to run back to Today. It will not go beyond the edge of the wilderness of Tomorrow.

The Spoon Theory

2009-02-22T09:43:00.002-05:00

This is a very interesting writing that explains the energy conservation measures a person with a chronic condition goes through every day. It's long, but worth the time. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Surgeon Update/Les Update

2009-02-22T08:58:00.003-05:00

I didn't mean to concern some friends when I explained that I was having a follow-up with the DIEP flap surgeon. I had developed two lumps and wasn't sure what they were. My oncologist's PA also wasn't sure, so she suggested I go back to Dr. Cutter, who is local, to have them checked. No way, no one but Dr. Chang is going to do any procedures on these flaps.

So on Friday Jim and I took a drive down to Baltimore. Dr. Chang and his surgical assistant reassured me that the lump in my left flap is fat necrosis, and relatively small. He will be able to do a little liposuction on it during my revision surgery if it hasn't reabsorbed by then.

The other lump, between my right flap and my armpit, is not fat necrosis. They speculate that it is scar tissue. That makes sense to me because it is the spot that keep me from having complete range of motion in my right arm. Too much stretching there (as with yoga) leaves my right side pretty sore for the rest of the day. I have started a massage routine on the suspected scar tissue to try to soften it up.

We also talked about why I continue to have discomfort in spots about one inch above my abdominal incision. Turns out that's where they cut through the muscle to harvest the feeder blood vessels. Dr. Chang said it could be up to a year for that soreness to go away.

Dr. Chang and his surgical assistant spent some time "planning the project" on my chest. "We can lift this up a little bit here." "We can pull this in." "We can fill those scar lines with fat from the abdominal liposuction." It was a little uncomfortable being looked at as a canvas.

As the visit was ending, we complimented the surgical assistant on her new hair-do. Dr. Chang said "show them," and she whipped off a wig. She has alopecia areata, an autoimmune disease that causes her to lose her hair in round patches. And, where she has the balding/thin spots, her hair has turned pure white. She must feel pretty comfortable with her patients, or lack vanity, to just whip off her wig like that.

So the surgery is going to be April 27 at 12:30. We are to arrive at 10:30. Dr. Chang said I would likely be released from recovery about 4 or 4:30. Just in case we happen to run longer, or we are whipped by the procedure, I'm making an overnight reservation at the hotel across the street from the hospital.

I've talked with Les a couple of times since he's been home. He's taking some work phone call already, and doing some walking for exercise. He will see someone at the surgeon's office, maybe it's this week, to have the staples removed and to get the pathology report. He has appointments with medical and radiation oncologists in early March.

Les went home Friday

2009-02-15T13:06:00.000-05:00

I don't think he was the ideal hospital patient. But he sounds good now that he is home. Sadly, Donna caught the flu while Les was in the hospital, so their younger daughter is there caring for both of them now.

I am so happy that this step of Les's journey is over.

Les called this morning

2009-02-11T09:13:00.002-05:00

His voice is the most beautiful sound on earth. He is weak, in pain, and a little mumbly, but in very good spirits. He's out of ICU and into a regular room. What a weight that short phone call lifted for me.

Fuck

2009-02-09T13:27:00.004-05:00

Les's older daughter just called. The surgeon found a spot at the top of Les's left lung, attached to the artery, and had to take the entire lung. Taking the entire lung will make for a longer recovery, but a better outcome.

Les is in recovery now, a little freaked out because he woke to find himself still intubated. His color, O2 level, and blood pressure are good. He will be transferred from recovery to ICU. They may hold him there for a few days because the hospital is full and there are no beds available outside of ICU. Future treatment will likely involve radiation.

I was about to break into tears, but my neighbor came by with her border collie puppy. Shotsi. Not spelled that way, I'm sure, but that's the phonetic. The puppy took me out of my funk.

In Surgery

2009-02-09T08:37:00.001-05:00

Les should be in surgery now. The surgeon has indicated that he plans to take only the lower lobe of the left lung. Prayers, bright light, and calm for Les and his family, and skill for the surgeon.

Reality Checklist

2009-02-04T04:10:00.003-05:00

Ennis, my diabetic cat, usually asks for food every two to three hours. Small frequent meals help him feel better. It doesn't matter to him whether it is day or night.

If I am sleeping--napping or out cold for the night thanks to a sleeping pill--Ennis wakes me. It often involves a cold paw applied to my cheek. Sometimes, it is just the presence of this big hulking cat standing next to my head and purring loudly.

It might be advancing age, it might be the effects of cancer treatments, but when I wake I go through a reality checklist. First I decide whether I can be woken. If not, I advise Ennis to go ask his "poppy," Jim. Ennis usually doesn't buy that and I get another cold paw on the face.

So I progress with my checklist. I observe the outside light--am I taking an afternoon nap, is it the middle of the night, or is the dawn breaking? I roll over to check the clock. Will my feet and legs move; will they hold me when I go vertical? Up to a sitting position. Do I need to use the restroom?

Get up, grab a can of food from on top of the TV, pop it and scoop it onto the plate on the bed, and head to the restroom. I continue my checklist. If it's nighttime, the checklist goes like this--Did I brush my teeth before I collapsed into bed? Am I hungry? Did I take my nighttime pills? What day is it going to be? Do I have plans for the day? What's the weather supposed to be?

If it's daytime, a different checklist--What day is it? When did I fall asleep and why was I taking a nap? Do I have plans to get up at a certain time? Is Jim home?

I deliberately ask myself these questions. BBC (before breast cancer), those realities used to just pop into my head. Not anymore; now I need a checklist.

Since Monday night, I haven't needed my checklist. I wake up and it hits me--my brother has lung cancer. I just focus on that, and all the other realities flood into my consciousness, smothering the fear I feel rising in my belly.

I hate cancer.

My Brother has Lung Cancer

2009-02-03T03:33:00.002-05:00

Les is the person I love second best in the world, and a real close second to my husband Jim. Les has just told me that he may have cancer in his left lung. He has a tumor in his lower lobe that is something like 2x3 cm. Les said "may" because he has not yet had a sample of the tumor tissue pathologized. But as his doctor told him, PET scans don't lie. The PET/CT scan lit up the tumor in the lower lobe of his left lung.

I'm not sure what I should write here about Les's cancer because he reads this blog. But I don't think anyone who knows him, other than some of my friends, read this blog, so unless he asks me to stop I will write what's on my mind and in my heart.

Les has multiple sclerosis, diagnosed maybe ten years ago. He has been so brave in that struggle, still working full-time or more, despite what are now very serious physical limitations.

Les is four years younger than me, and the only one of my six siblings I keep in close touch with. Most of my siblings have hurt me, emotionally or physically, in some significant way. Les never has. He adores his wife Donna, and has two adult daughters he holds dear, and a number of grandchildren.

Our family of origin was very dysfunctional, and with the abuse, my siblings and I became loners or went outside the family for emotional support. I was not close to Les growing up, although he was a nice enough kid. I "remet" him at a family wedding in the 1980's and we hit it off like gangbusters. How could I not be drawn to this brother who was intelligent, and funny, and hardworking. We ruined many a wedding photo cracking up at the raunchy jokes we whispered to each other.

Les lives in rural northeast Texas, and easily picked up the Texas drawl when he moved there. He sounds like a native. He has worked for years for oil field service companies. He is very mechanically inclined; as as my sister-in-law says, he is handy as a shirt pocket.

Les tells me he has been going through diagnotic testing since December 19, 2008. It all started with a chest X-Ray, although I don't know the reason the X-Ray was taken. Seeing a suspicious area, testing proceeded to other imaging methods, as well as a bronchoscopy to remove a tissue sample for pathology. The doctor was not able to get deep enough into the lung to get a sample of the tumor, but other tissue taken from the procedure was clear of cancer cells.

Les is seeing a thoracic surgeon this Thursday. Les has been told that regardless of whether the tumor is cancerous or benign, it has to come out. Therefore, the doctors are not planning a needle aspiration of the tumor; they plan to go straight to surgery. Les says that by this time next week, either the lower lobe or the entire left lung will have been removed. Les has had pulmonary testing that shows he will be able to function with his right lung alone.

Yes, Les is a smoker. Our father died young of lung cancer, with metastasis to the brain.

A Long Overdue Update

2009-01-24T10:16:00.003-05:00

It's been almost 3 months since my reconstruction surgery, and I am so sorry to be remiss in giving updates.

I am just flat-assed happy that I had this reconstruction done. I am finished with physical therapy, and have complete range of motion (ROM) in my left arm with almost no discomfort. My right arm ROM is vastly improved over pre-reconstruction status, although not 100%. But manageable, very manageable. And it may continue to improve over time. Experience shows that it takes me about a full year to fully recover from a major surgery.

My abdominal swelling is completely resolved, and I can button my jeans again. YEAH!!

I found myself slipping back into clinical depression after the surgery, and I really couldn't understand why. My therapist suggested I go back onto antidepressants, but the nurse practitioner that I wanted to see in the office was not taking new Medicare patients. (Why this place screws with mentally ill people has always confused me.) But over time, the depression lifted. I mentioned this at a cancer support group meeting, and someone suggested it might have been anesthesia-induced depression. I had never heard of such a thing, but it certainly made sense.

I have started exercising again, mostly at the YMCA. I try to do at least 2 yoga sessions a week, as well as something else. Sometimes the something else is a mile or two on the stationary bike. This week the something else was a class called "Dance NRG" (energy). Semi-aerobic, lots of bouncing and stretching, quite a challenge for the sensory neuropathy in my feet and the motor neuropathy in my legs, and a real brain teaser for my cognitive impairment--trying to remember the steps. I just might do that class again next week.

I am trying to get into an exercise study for breast cancer survivors. It would involve 14 weeks of supervised exercise at a pretty classy rehab facility. There would be pre- and post-study measurements. The one problem is that the study would have a randomly chosen control group. The control group would get the measurements, but be asked not to engage in an exercise program during the study period. I will not be part of the control group, even if it means not joining the study and thus not getting the possible opportunity for the supervised exercise.

I lack stamina right now, and I know exercise, and nutrition, will put me back to right. And we all know how bad I am about nutrition, so exercise is necessary.

Here's an example of lack of stamina. Yesterday, I did about 2 hours of running around chores, and then about 2 hours of housework. Nothing really physically challenging. I watched TV in my bedroom in the evening, and laid my head down at 10pm for a quick nap. I woke at 1:30am. I hadn't realized how pooped I was.

Jim has been away this week at Myrtle Beach for a guys golf week. It's been nice to get a little alone time, and not have to plan and make dinner every day.

We haven't had such a great 2009 so far. At New Year's, Jim and I both came down with a GI tract virus--vomiting and diarrhea. It wasn't the flu; no fever or muscle discomfort. Jim had it for 3 days; thankfully, mine was only one day. Then Jim had in-office surgery on his head for a basal cell skin cancer. The next day he was diagnosed with macular degeneration. We saw a specialist, and he had the dry kind in his left eye and the wet kind in his right eye. His left eye isn't too bad, but the right is. He has started treatment on his right eye, which involves the injection of a small amount of a chemotherpy agent into his eyeball. Every six weeks. The shot isn't painful, just frightening, so I will be pre-medicating Jim with some valium before his next shot. (There is no treatment for the dry type of macular degeneration.)

I had been suffering since early December with a full body rash. Our dermatologist gave me a cortisone shot and some acid mantle cream, and although the rash and itching were reduced, they did not fully resolve. When the DR saw me 10 days later, she declared that I had scabies, which comes from mites. The DR said I probably picked them up in the hospital. Both Jim and I had to be treated with a Permethrin cream, and our bedding, towels, and clothes had to be washed in hot water, or put into sealed trash bags for two weeks. I still have some itching, but I think it is just my normal winter dry skin.

And of course, there are our new babies. Emma Leah is a grey tabby with white bib and legs, and Casey is an orange tabby with white bib and legs. When we got them in early December, Emma was 4 months and Casey was 6 months old. Both came from shelter/rescue situations. Casey brought in a very nasty upper respiratory infection, which all the cats got, including Grandpa Ennis. It continues even now, with Casey finally on a course of Doxycycline Hyclate (an antibiotic) because he is now sneezing green snot.

Ennis isn't thrilled with the new cats, but he's becoming accustomed to them, especially now that he is over the conjunctivitis he picked up from Casey.

So what does the future hold? Jim is toying with the idea of going to Clearwater, FL, in March for part of the Phillies spring training. I am starting back on that book I still need to write for the AICPA. I have revision surgery on April 27, where the surgeon will be making cosmetic corrections to my breast flaps and adding nipples. Jim may have his other knee replaced this summer....he seems reluctant to go through it again. Other than that, we are just looking forward to the end of winter, even though we have been very fortunate with little snowfall so far.

Water Fountain in a Japanese Mall

2008-12-10T10:33:00.001-05:00

Five Weeks

2008-11-30T09:57:00.002-05:00

Tomorrow will be five weeks. Alot of my swelling has gone down. Because of the reduced swelling, I can tell the right flap (breast) is noticeably smaller than the left. Also, some of the scarring from previous surgeries on the right that were not covered/removed by the flap are now making "ripples" in my skin. That doesn't matter though. I can MOVE!! Also, the flaps are slightly under my armpits. That does create a slight movement problem, but I've been told that can be resolved at the April revision surgery.

I continue to have healing problems in my abdominal incision. The physical therapist had me doing torso stretching, and that ripped my incision in one area. So no more stretching, and today I'm going to have Jim help me clean that area well, put on antibiotic cream and butterfly bandages, and then we will cover with a clear plastic dressing. I'm not sure what the clear plastic is called, but we use it when Jim has skin tears. It can stay on for up to a week and doesn't come off in the shower. I am concerned that the scar in that area is going to end up 1/4 inch or more wide because of all the stretching to it.

Emotionally, I'm a little down. Not getting enough outside time, I think. I have purposefully gone out for sunshine the last two days, but today is very gray, so no Vitamin D tonic for me today. Ennis (the last cat standing) also is down. I think we may both just be a little bummed out by having no other furries in the house.

Four Weeks Post-Surgery

2008-11-24T08:20:00.002-05:00

Written 3 weeks ago on the FDMB:

It's been 3 weeks since my bilateral breast reconstruction surgery. I saw the surgeon last week in Baltimore.

The cosmetic outcome of the rearrangement of skin and fat from my belly to my chest is "above average." I will likely need only a little work when I get the "stage 2" outpatient revision surgery in late April. Just a few nips and tucks to make everything even up top and maybe a little lipo to take out the "handles" at the ends of my hip to hip incision.

The incisions still have a few weeks of healing before I am allowed to submerge in water (bathing, swimming). I am good to go with range of motion physical therapy (PT) on my chest and abdomen, but no core strengthening exercises until after another check-up in 6 weeks.

There is some damage in the intercostobrachial nerve (upper underneath part) of my right arm that may or may not resolve with PT or just on its own. I am having numbness and pulling in my belly in the waistline area. This is above the abdominal incision. That is from swelling where the surgeon cut through muscle to remove the blood vessels feeding the donor tissue. The discomfort in that area may take up to 3 months to resolve.

Some of the donor tissue is starting to "harden" in my left breast. Again the result of the surgical trauma, and I was instructed to frequently massage that area to break up the edema and soften the tissue.

All in all, my recovery is progressing "normally."

Week 4 Update:

I do feel better than I did a week ago. The numbness and pulling at my waistline is starting to resolve. The healing on my abdominal incision continues to be slow; there are large areas of scabs that pull out when moistened and the the whole incisional line is red and puffy. The quick oatmeal bath I took yesterday for dry skin set that incision's healing back about a week.

The incisions on my breast flaps only have small scab areas left, mostly at the corners of the flaps.The hard spot in the upper left breast has not changed in size and I am palpating it (as well as the other breast) a couple times a day. From what I read on the breastcancer.org discussion board, the hardness might likely be fat necrosis, which the surgeon will have to remove during the revision surgery.

I want to recognize the tremendous help I received from Donna, my sister-in-law, and Linda Lee, a friend from FDMB. They each stayed with me for 10 days during my recovery. I can't imagine having gotten through this without their help in caring for me. Donna certainly had the harder "duty" because she got me straight out of the hospital, when I was my most feeble. Linda Lee had different challenges; she had to try to keep me in bed to rest as I kept trying to do too much.

Linda Lee and I did have a few outings while she was here. I am able to drive as long as I'm not on narcotic pain meds. We took her cat Josephine to the holistic vet twice for acupuncture and reiki. We added some other stops to those trips.

Jim now has me full-time, and I wasn't happy the first time he left me alone in the house. It was only for a few hours, and there was no reason for me to be fearful, but I was. I dealt with it by taking a nap. We are living on sandwiches, soup, and ice cream because I don't have the desire to make evening meals, but hopefully I will get over that soon. Thanksgiving is this week. Can I roust the energy to cook a turkey breast and all the trimmings? Hummm.

Ennis has been by my side almost every minute of my recovery. Or perhaps I should say I've been by his side, as he sleeps on my bed all day anyway.

The oddest thing is I am getting my stress rash on my hands. This is something I dealt with years ago, and it always threatens to flair up from time to time, but it hasn't shown itself through this entire cancer journey. Why it would start to flair up now is beyond me.

Nine Days Post Surgery

2008-11-05T12:58:00.005-05:00

It's been nine days since my DIEP Flap.

The night before the surgery Jim (the birthday boy), Stefani, Cindi, and I went out to dinner in little Italy in Baltimore. I was so very stuffed on eggplant parm amd a huge bowl of strawberry gelati.

The surgery took only 4 hours. Dr. Chang said I had a "perfect anatomy" so the blood vessels were easy to find and reattach.

I was in ICU the first night, limited to ice chips. The next day I was moved to the "women's issues" floor, and continued to be limited to ice chips. Frankly, the ice chips turned out to be the best food I had while I was there. Patient care in ICU was a one to two staffing ratio, but care was just OK because I was there as a surgical follow-up, not as a critically ill patient. I remember very little from the entire experience because of the meds, but there was the ICU charge nurse, Christy, who spent time with me because I was very upset because I could not move, eat or drink, or see Jim. She even called Jim for me to make sure he was OK.

Jim was not going to be able to see me until 11am on the day after surgery, and once the charge nurse in ICU understood that I was not going to calm down until I saw Jim, she worked on trying to get him in earlier. However, Jim, thinking he was restricted until 11am, took a late, leisurely breakfast and didn't get to me until 10:30.

Cindy came to visit on Wednesday noon, bringing a card of well wishes from the FDMB. Stef was going to visit later that day, but I called her off because I was so fucked up from meds.

I don't recommend Mercy Hospital in Baltimore. The food was lousy, response to the call button was excruciatingly slow, I couldn't keep myself focused because of the meds. I was so eager to leave on Thursday that I left before my visit with the Occupational Therapist, which the staff didn't tell me about until I was walking out the door.

Back home to my own bed and my kitty Ennis. He had been looked after by Leslie (from the FDMB) and Nancy, my neighbor. My sister in law Donna flew in the next day, Friday, and has been doing a great job watching out for me.

Jim and I traveled to Baltimore and back Monday for my one-week follow-up with the surgeon. (Very exhausting trip; potholes are no fun; neither are stop signs.) The tissue transfer from the abdomen to the chest area is taking well. No necrotic tissue. I have minimal swelling and redness in the surgical areas.

I was able to have one of my 4 surgical drains removed, and got permission to have the visiting nurse remove the remaining drains as conditions warrant.

I am still on heavy movement, lifting, and position restrictions. I can't even think about standing up straight until week 3. I am to start wearing a belly girdle to compress the area to help it heal more quickly, but it seems too small to get it fastened. Shower restrictions are completely lifted. I have enough pain meds for about 2 weeks, when I will see the surgeon again.

My sutures and bandages are self dissolving, and that should start happening in a few days. The home visit nurse (Joan) came today but the remaining drains were not yet ready to be pulled. Maybe tomorrow.

Donna will be here until Monday. She is doing a project, repainting a crockery cookie jar so that the kitties on the lid look like Max and Ennis. I haven't had much of an appetite, but she has been doing a good job trying to keep me fed.

Linda Lee comes in on Tuesday for 10 days. She is bringing her cat Josephine. I really think Ennis could use the company. I have never met Linda in person, but she is one of my best friends. We met through the FDMB.

On Wednesday I have an appt with Dr. Gillis, the physiatrist, to start rehab. I want to use Michelle Cooper, the dear woman who was my first physical therapist on this road. My earlier insurance had no PT limits, but I believe Medicare does, which I will have to find out about.

Well, the biggest info about this post is that I have taken pictures of my torso. I took one set the morning before surgery. It shows the mess that Dr. Boob had left me in. The second set I took this morning, showing my progress at day 9. I don't want to shock anyone, so viewing the photos is entirely voluntary. The first set is here; the second set is here.

Please Help Simmy

2008-10-20T07:42:00.003-04:00

This is the extra-sweet Simmy. Simmy is a diabetic, although he is presently diet-controlled. Simmy's person is Cheryl, and together they are known on the FDMB as Foursavages.

Here are the facts. Simmy need a visit to the vet and perhaps some procedures, and the fund I helped set up some time back to accept donations for Simmy's vet care and medical supplies is too low for what Simmy needs. We have a fund because, well, because we need to.

Here's the deal. Were you thinking of sending me a card while I was in the hospital? Maybe some flowers or a do-dad? Maybe even make a call to see how I am doing?

Could you take that $1, $5, or $10 and instead of spending it on me, send it to Simmy's fund? The fund is at PayPal, and you can read about Simmy and access the link to the fund at his blog: http://simmycat.blogspot.com/. The PayPal link is at the top of the front page.

I would really appreciate your help, and I know Cheryl and Simmy would too. Even if you weren't going to send me a card or make a call, maybe you could consider a donation?

Thanks to all for listening.

My pre-hospitalization Perm

2008-10-19T09:56:00.002-04:00

For some reason, I thought this would be a good idea. The kitty is my dear Lily.

Hospital and Surgery Info

2008-10-18T08:31:00.003-04:00

I've been asked to give details about my surgery and info about the hospital.

The surgery is a Deep Inferior Epigastric Perforator (DIEP) flap. This article includes drawings and photos. The surgeon will be removing an football shaped piece of skin with the underlying fat and associated blood vessels from my abdomen. That piece of tissue will be cut in two, and the blood vessels of the pieces reattached to the blood vessels in my chest area. The following drawing show a unilateral reconstruction; mine will be bilateral.

The surgery takes 6-8 hours, depending on how long it takes to identify the perforators. I will be in the Intensive Care Unit overnight and transferred to the ward the following morning. I am supposed to be able to ambulate on 1st postoperative day and be discharged home on 4th postoperative day.

I will have a second stage revision and nipple creation under local anaesthesia with intravenous sedation on an outpatient basis between 8 and 12 weeks after the initial surgery. The revision is to further refine and finish the appearance of the breasts. There may be scar revisions at the donor site performed at that time.

My surgery is at Mercy Hospital in Baltimore. The phone number to reach patients is 410-332-9000. For those who might not know, my last name is Wood. Visiting hours once I am out of ICU are 11am to 8:30pm. The cheapest parking is to leave your car with the valet at the Weinberg Medical center, which is attached to the hospital. Here is info on directions and parking.

Linda Lee (Linda and Napoleon) is our FDMB contact. She will be in touch with Jim or me, and post info on the Community Board. I will be home sometime on October 30, so after that you can reach me at home. I likely will not be getting on the computer often, so phone is better than PM or email.

Halloween's Coming....

2008-10-13T08:46:00.003-04:00

Are you getting your costume ready?

So What's Up?

2008-10-12T11:36:00.002-04:00

Been a long time since I posted. Sorry.

Jim is recovering remarkably well from his knee replacement surgery. He had the left knee done, and presently it is his right knee that is troubling him. He has about 4 more weeks of physical therapy (3x/week). We walk in the neighborhood at least once a day and Jim does mobility exercises in the house twice a day.

Lily, my 15yo tabby cat, has been diagnosed with osteosarcoma (a bone cancer) in her jaw. It presented as a growth in the soft tissue of her mouth, which was surgically excised along with her upper right canine tooth that had been rotted by the cancer. X-Rays showed that Lily is not a candidate for surgical removal of the cancer from the jaw bone, so we are moving to medicine-based palliative care. Other than the cancer, Lily is in great shape for a cat her age. We can expect that she will live at least a few more months, but will start having clinical symptoms that will include drooling and discharge, bleeding, and odor from her mouth. We will be treating her with antibiotics, anti-inflammatories, and pain medications. I have started a separate blog about Lily's cancer journey.

Two weeks from today, Jim and I will be traveling to Mercy Hospital in Baltimore for my Deep Inferior Epigastric Perforator (DIEP) flap breast reconstruction surgery. This surgery will remove the skin and fat from my lower abdomen (without removing muscle), transfer the tissue to my chest area, and reconnect the feeding blood vessels to vessels in the armpit. The abdominal wound is closed like a tummy tuck.

I have gained about 30 pounds in the past year to be able to have the tissue to do this surgery. I'm up to almost 150 pounds. It's not a very attractive look on me, quite a bulbous belly, but the surgeon, who we saw two weeks ago, is very happy with it.

The surgery is scheduled for noon on Monday October 27. It will take 6-8 hours. I will be kept in ICU overnight so that there is constant monitoring of the bloodflow to the transplanted tissue. To monitor, the surgeon will put a doppler monitor in my chest. I will stay two more nights on a regular hospital floor, and hopefully be discharged on Thursday October 30. I will return to Baltimore the following week to have the surgical drains and doppler removed.

Jim will be staying in Baltimore with me, at a hotel across the street from the hospital. We hope to visit with Stefani the day before the surgery, which is also Jim's birthday.

We originally planned to take Ennis with us, but without knowing exactly when we would be leaving the hospital in relation to checkout time from the hotel, we decided to leave him at home. Leslie from the FDMB will be coming in once a day to give him his insulin shot. Because Lily might need to be started on medication while we are gone, she will be boarding at the vet.

The day after I get home, my sister-in-law Donna will be flying in from Texas to stay for 10 days. The day after she leaves, Linda Lee from the FDMB will be flying in from Atlanta for 10 days. The purpose of their visits is to keep me company, make the evening meal, and manage Jim--things like sending him out for provisions. Those flights were made possible by generous donations from two friends of frequent flyer miles. Thank you Dave and Jennifer!!

I have been spending alot of time trying to improve my mobility. I have greatly improved on the fatigue and bone pain fronts. I still have trouble with neuropathy in my feet and legs. I have been seeing an acupuncturist and she has returned some sensation to my feet and flexibility to one of my ankles. (She kindly is giving me a reduced rate.) I joined the local YMCA (on a low-income scholarship) and am taking a class in the Alexander Technique there. That has really helped my overall muscle pain. I also get into the pool and gym there as time permits.

I am paying to take a Feldenkrais Method class, but this Thursday will be my last class. Contrary to what should happen with this movement modality, I end up with cramps and in tears every time I try it. I consulted with a therapist about myofascial release massage on my restricted chest tissue to provide some relief in advance of my surgery, but she didn't want to take me on, fearing she might cause lymphedema in my arm.

And there is the bicycle I bought myself for my birthday. I probably could have better spent that money, because this bike's gearing system is really cranky compared to my old bike (which I sold at a garage sale).

That's where we are. I continue to thank the Powers that Be for my friends and for NED (no evidence of disease).

Life's Uncompromising Finiteness

2008-09-24T11:00:00.000-04:00

A phrase from John Grogan's Marley and Me. It struck me as extremely descriptive of the new daily perspective that having cancer brings.

Jim's Knee Replacement

2008-08-26T15:26:00.004-04:00

Jim has just had a total knee replacement. He will be in the hospital from today (Tuesday) through Friday. He is in a dedicated joint replacement unit, and the care so far has been fabulous.

This is him just 4 hours out of the operating room. He has zero pain right now because he had zero feeling. He was given a spinal block and it is still blocking.

I doubt we will see such a smile tomorrow!!

It's a Long Road

2008-08-22T14:28:00.003-04:00

Am I well? I think not. Ann says we have more work to do. I need to more fully understand that the person on my resume is no longer here. She's never coming back.

This came up because I have an unfinished book contract, and I can't afford to repay the advance. And I can't find someone to finish it. And I don't know that I can finish it myself.

Jim goes for surgery next week, and I've dedicated next week 24/7 to him. The week he gets home though, we have agreed that I will open up that book project to see what sort of shape it's in and whether I could finish it. Or what I can do to get out of the project.

It feels like that book is a brick wall in the road of my journey. I have to move on. I have to put the past behind me.

I saw Dr. Gillis, the physiatrist, today. She doesn't seem to have much additional to offer. She is putting me back on Cymbalta, a low 20mg dosage, for its off-label use for neuropathy. She wants me to take it at night, to minimize the fog I experienced from it. She wants me off the Klonopin, which I take off-label for restless leg.

She gave me some foot and leg exercises, and encouraged me to keep up with my movement therapies. But that's it. She wants to see me after my breast reconstruction surgery in October to make sure I get appropriate therapy for the surgical scars.

So the road has speed bumps as well as brick walls.

What's Up Now

2008-08-17T10:59:00.002-04:00

Diagnosed in 2/2006. Two and a half years ago.

I hate being part of the cancer journey. I have met many dear people traveling the same road, and have lost some to the scourge. I found out about another one just this week. Gil Crain, an academic who used to do research work for the Governmental Accounting Standards Board. I didn't even know Gil had multiple myeloma, a cancer of the blood plasma. Multiple Myeloma, along with leukemia, took Maryanne McGonagal, one of my support group members, this spring.

Lymphoma, ovarian, pancreatic, melanoma....types of cancer that are far too common in my slowing shrinking world.

Enough of this yaking. Just wanted to let you know I am trying to take care of myself.

And "Mets." It doesn't matter what from. It's a word that lets you know you have, at most, no more than two more years with your friend.

Mets to the bone, liver, brain, lungs. Mets to the bone is painful. You can see the pain, along with the fear, on the face of those with bone mets. Brain mets---the slow loss of cognitive functions. Liver and lung mets---the maintenance chemo and frequent scans---have the tumors shrunk?

I am nearly certain that mets is in my future. Maybe it's the company I keep. I keep hanging out with the cancer support groups, and most of the long-timers there have eventually developed mets.

I'm living somewhere between estrogen and death. Estrogen suppression is a lousy place to be. Tamoxifen for 3 more years, then a 5-year course of an aromatase inhibitor. I'm not sure I'm all that shot in the ass with living the next 8 years, maybe the most if not all of the rest of my life, on toxins.

Cognitive dysfunction. Lethargy, chronic bone pain and muscle aches. Peripheral neuropathy. Locked joints.

And my western doctors have thrown their hands up at my "vague" symptoms. Thank God Social Security saw enough to put me on disability.

I also am giving up on my Western doctors. I now only go to my oncologist's office every 6 months, with only one of the two annual visits with the doctor himself. Otherwise, the oncology nurse. No more regular visits with my general practitioner. I will be seeing the psychiatrist only two more times--hopefully--before I am completely off the antidepressants.

I am in the "survivor" phase, so I had a meeting with the Cancer Center's Survivorship Multidisciplinary Group--a psychologist, a social worker, and an onc nurse. They set up three goals for me.

1. Restart psychotherapy with Anne. Sadly, Anne is going into semi-retirement, but is willing to continue to see me if I need her, but not more than once a month. I don't plan to break in a new counselor.

2. See Dr. Gillis, a psyiatrist at the Cancer Center. Physiatry is a branch of medicine dealing with functional restoration of a person affected by physical disability. I knew Dr. Gillis was at the Cancer Center, but I didn't think I would qualify for her time, given my "vague" symptoms. But the Multidisciplinary Team and my onc think I do, so I see her next week.

3. Contact Guy, the director of exercise services at the Health System's Preventive Medicine and Rehab Institute (PMRI), about a functional study that will be starting soon. This is a grant-funded program where women recovering from breast cancer treatment will be measured, put through a three-month program of exercise services, and measured again. The study is designed to determine how exercise improves quality of life for women recovering from breast cancer treatment. Sadly, the grant writer has left the Health System, and they are having trouble finding someone to take over his responsibilities on the grant. Also, because I would have to make a three-month commitment, I could not join the study until after I recover from my breast reconstruction surgery in late October.

It's designed to be an ongoing study, so maybe come January 2009 there will be a place for me. The benefit of getting into the study is free access to the PMRI facility and sports physiologists for three months.

Meanwhile, I am spending my "mad money" on alternative/complementary modalities to try to relieve the stress/pain areas in my body, and to try to rebuild my core strength (although I am not sure that is going to be possible while I am on the Tamoxifen). I am focusing on musculoskletal modalities. A chiropractor was very good about helping me break the pain cycle, and now I see her every 3-4 weeks. I try to go to yoga weekly. I tried reflexology, but that caused too much pain in my feet. I tried reiki and ionic foot bathing, but didn't see any improvement after a single session (and I can't afford the 3-4 sessions the practitioner said it might take to see possible improvement). An acupuncturist is doing a great job of bringing some feeling back to my feet and toes; I am seeing her 2x/week.

I bought myself a bicycle for my birthday, and am trying to get out on it every other day. Many times, I have to get off and push, but still it's exercise. When I got home from my ride this morning, I did have elevated cardiovascular function.

I am looking into the Alexander Technique classes at the local YMCA, and am on the hunt for a local Feldenkrais practitioner for Awareness Through Movement classes.

What cancer takes, and shows

2008-07-31T09:08:00.002-04:00

This is from a facilitator on my on-line cancer support group. It's one of those "dead-on" statement for me.

Cancer takes everything that we usually associate with why we are loved...control over our bodies, how we look, our management of emotions, our professions. Sometimes it can show people that it is their essence that is loved, not the trappings.

Thank you Leslye.

My favorite photo--so far

2008-07-12T13:07:00.002-04:00

Of Jim and me, on the bullet train from Paris to London.

It Ain't Just Cancer That Sucks

2008-06-13T10:37:00.002-04:00

I can get quite annoyed at those who maintain that cancer, as a chronic illness, is unique and requires "special" understanding for those going through it. That is hogwash. My brother and a good friend have MS. I have just fully understood the effect on another friend of her husband's sarcoidosis. Having myself been through noncancer-related chronic fatigue and pain for the last year, I have had some glimpse of the lives of my friends with fibromyalgia.

I stumbled upon a great deal of wisdom this morning in a sarcoidosis support site. I am assuming this is in the public domain, so I proudly reproduce it here. I just wish I could transport back in time about 30 years and put it in front of my young punk face; too many times I was unsympathetic to those with chronic pain, fatigue, and diminished physical and mental function. Geez, I would think; stop complaining and get some exercise or lose a little weight.

May you enjoy this person's writing style as much as I do. If you have empathy for the topic, I need say no more. If you don't, read it a second time, and tuck it into your life experiences file under the "pending" tab.

No Onions and Hold the Malaise—Sarcoidosis and Feeling Like Crap

In the same way that seemingly harmless dew can rust a mighty iron girder until it crumbles asunder, so it is that Sarcoidosis induced Malaise patiently wears vitality down to humbled fragility.

Well now, that might just be a tad too poetic; let me rephrase in my native blue-collar loading-dock vernacular: Sarcoidosis makes ya feel like crap, pal.

If there is one insidious symptom of Sarcoidosis that is understated and most often overlooked by patient and doctor alike, it is Malaise. It’s that overall crappy flu-like feeling where you feel like a swollen, tender, banana slug that just wants to crawl under some wet leaf litter and sleep. And sleep. And sleep. And sleep. Waking only long enough to take a bite of a partially eaten peanut butter cup, sip some warm tableside iced tea, fluff up the pillow and go back to sleep. And sleep. And sleep. And sleep.

When Malaise is acute, one experiences the above. An almost instinctive desire to curl up into a ball and snooze until whatever-it-is seems to pass. Trouble is, no matter how much you sleep (and you can sleep until your jammies are part of your skin) you just don’t seem to get enough rest. You wake, feeling as tired as when you first performed the narcoleptic face-plant. There is a real danger that someone might accidentally call a hearse and you will be zipped up in a body bag and sent to Gently Ditched Funeral Home by way of the rear loading bay.

After a time, all this sleeping has the same effect as psychotropic drugs on the Sarcoidosis sufferer. Reality starts to bend and warp, as one is never sure what day it is or the hour. Did I eat? Did I go to the bathroom? Did I miss that last denture-clenching season finale of Matlock? My God, the dog has left a Dear John letter… he’s even taken his leash. Soon friends and family take the hint and no longer try to entice you to join the land of the living with invitations to dinner, ice cream, or cattle prods. You are left to sleep wherever you have fallen with a few nightlights left on; like the body of Vladimir Lenin, waxy and perpetually in stasis… sleeping forever. If you are lucky, a loved one might occasionally dust your forehead and apply some fresh rouge to your cheeks.

But that is the acute form of Malaise. There is also the laid-back, background noise form of Malaise that permeates the life of a Sarcoidosis chronic. Its like that pot of coffee left on the warmer all day and night, slowly getting more foul with age, ever-present in the air, always in the background, on a very low simmer; so unobtrusive that the Sarc sufferer gets used to its smell without even knowing it. We come to accept that we feel like crap until we don’t remember what NOT feeling like crap ever felt like. And believe it or not there is a comfort in that. In the same way you don’t air-drop coupons for a free Complete Thanksgiving Day Turkey Diner onto an island castaway who has just gotten used to the idea of eating only coconuts; so it is that a chronic Sarkie dreads those days where one feels absolutely normal. It’s a tease. And it makes that background, low hum, low grade fever of Malaise all the more apparent the next day. All of this adding to the already top-heavy pile of psychological baggage we have to endure that resembles the teetering back of the Clampett’s truck on their first foray from Tennessee to the Beverly Hills. Goats and washtub included.

When someone casually asks me what Sarcoidosis is (and they really aren’t interested in anything but a sound-bite answer) I usually site Malaise in this quick retort, “Imagine having the Flu everyday, all year, for the rest of your life.” That usually leaves them nodding blankly as their little sound-bite minds try to wrap around the concept, and I can slip by and walk away.

Sometimes I refer to Malaise as Mayonaise, both for the phonetic word-play and the fact that that is what it feels like sometimes; the once crisp fresh cool lettuce of my life suddenly smothered with a glop of tepid congealed cholesterol laden fatty goop. Besides, as I have mentioned before, Malaise is too pretty a French sounding word for feeling like crap. If we are going to use a French term for it, lets use Merde.

“J'ai la Sarcoïdose et je me sens comme la merde!”

Hold the mayo.

May 1, 2008

2008-05-01T15:26:00.000-04:00

Venita goes to lunch with Sue.

Info for Yoo Kay Visit

2008-03-26T12:58:00.004-04:00

Hello all our UK friends. I am writing this here so that it is easily accessible to all.

Jim and I are very excited about coming to Europe and having the chance to meet with some of our FDMB friends.

Itinerary

Friday, May 16. Disembark the QM2 in Southampton. The ship docks at 6am, and it takes several hours to check passengers off the ship. We have a private car that will take us to London. Our hotel is not yet firm, but looks like it might be the Novotel London West. Here's a Google Map of it. We would hope to be settled into our hotel and ready to roam about by 2pm (14:00).

Saturday May 17 is free.

Sunday May 18 we are with the tour group for part of the day. The sights they have on our itinerary are: the Houses of Parliament and Big Ben, Westminster Abbey, the Prime Minister’s Downing Street, Buckingham Palace, and the Changing of the Guard, if held.

We return from the continent late on Saturday, May 31 and already have plans to go to the Tower of London for the Ceremony of the Keys with Steve and Sabina at 22:05. Hopefully, we will have dinner beforehand. Our tickets for the Ceremony are for 6 people, so if there are 2 more who wish to join us, please let me know.

We plan to take a day trip to Bath, Lacock, and Stonehenge with a tour company on Sunday June 1. That will be an all-day trip.

On Monday, June 2, we take a private car from London to Southampton for the return ship to the US.

What Else We Would Like to Do

We would like to hook up with FDMBers and thank Elizabeth for her kind offer of her house for a visit. But we would like to stay in London to see some things that are on our "really want to do" list. Those are:

London Eye
Thames River Cruise (or at least a taxi up the river)
St. Paul's Cathedral
Tate Museum
Tower of London
Hyde Park

There might be other "really must do" things that our UK friends can tell us about.

So what in-London sights might FDMBers want to see?

I think it might be fun for a group to get into the same compartment on the London Eye. The Eye opens at 10:00 and departs every half hour. One must be on-site for boarding 30 minutes before the scheduled "flight time." Tickets are £15 for adults, £12 for children.

I don't want to drag folks to tourist spots they don't care to afford or see, but Hyde Park is free, as is the Tate Museum. The Tate has free guided tours at 12:00 and 15:00 on Saturdays. We could do a picnic or some other meal together.

Please comment here or on the sticky on the FDMB reunion Forum. We can have a great time together.

Surgery Anniversary/Jim's Skin Cancer

2008-02-09T15:39:00.000-05:00

Today is the one year anniversary of my last surgery--the failed permanent implant. I do feel so much better now.

I got a call from the surgeon's office in Baltimore. The one where I am scheduled for reconstructive surgery in October. They have added another surgeon and offered to switch me to her so I could get this done faster. But I'm happy with the plan--take May in Europe and have the summer to garden. Save the nasty recuperation for the yucky time of the year.

Jim went to his dermatologist last week and she found a bit of basal cell carcinoma on his neck. She biopsied it, and will do a re-excision later this month to make sure margins are clear. He had a basal cell carcinoma a couple years back, so he gets checked annually for more of those little buggers. Basal cell is the most common, and "easiest," of the three types of skin cancer.

Flipsyde's Happy Birthday

2008-02-02T15:44:00.000-05:00

I had never heard of this group. This song, and video, are amazing. Just....amazing.

The Party's Over!!

2008-01-28T07:54:00.000-05:00

Jim comes home from vacation today. This week has just flown. But I enjoyed my piles and projects and honestly feel like I got quite a bit done.

I see the psychiatrist today for medicine management. I am pretty stable emotionally now, so he may reduce my visits to every 3 months. I would like to try for antidepressant reduction again in the spring/summer. Maybe after we get back from Europe.

I was visiting LifeLink to get Methyl B-12 for neuropathy (it worked well on Maxie's diabetic neuropathy), and ran into Evening Primrose Oil. I was looking for supplements that address nerve function, and saw that EPO also enhances Tamoxifen’s ability to suppress breast cancer. There has been a clinical study on it. Took a risk and ordered some; haven't spoken to the oncologist about it yet. That may do no good, though, because he poo-poos all supplements.

The fatigue and bone and muscle pain continue. I have a follow-up appt. with the endochronologist in about 3 weeks, with blood tests for calcium, PTH, and Vitamin D later this week. This has been going on for 5-6 months now. I am really going to whine to the endo this time about DOING SOMETHING!!

I met another breast cancer patient recently. She is in the Saturday yoga class, the one that is not at the cancer center. I believe she is still in chemo at this time, and is considering an autogenous (own tissue) breast reconstruction with a plastic surgeon in Philadelphia. His name is Joseph Serletti. He might be useful for a second opinion on my DIEP flap.

Jim should be limping considerably when he gets home today. He tried one round of golf, and he knees took the brunt of the twisting with the golf swing. Ouch! He also may need to "detox" from all the non-alcoholic beer he drank during the week. He said he "had to" keep up drink for drink with his golfing buddies when they went to the bars. Sigh!

Getting Warmed up for Europe

2008-01-22T12:29:00.000-05:00

Today, we got our first tickets for our Europe trip. The Ceremony of the Keys--the traditional nightly locking up of the Tower of London. We have invited Steve [and Jock] (formerly in Sweden and now in London) and his wife Sabina to join us.

I have been browsing around for things to do during our free time in London. I am looking at the Tate Britain, which is the national gallery of British art. Its website allows you to identify pieces you want to see and to build a tour, which you then print out and take with you. Admittance to the general collection is free and they have some free guided tours. Sadly, the major Turner pieces will be out of the country at the time of our visit.

My friend Elaina, who has been to Europe, has suggested some other places for me to check out--the Rodin Museum in Paris, the British Museum, and taking a train trip to Canterbury.

Some of the hardest part of this is web pages in foreign languages and currency conversion. Babblefish and other web sites help me with those. I am so computer-dependent, I know I will be just lost without computer access on the trip. I don't know anything about wifi or computer cafes or any of that. Another problem is that for many museums, the exhibitions for May (the time we will be in Europe) are not yet listed on their websites.

If anyone has suggestions for "must do" things in Europe or for internet access, please let me know.

Jim's away for a week on a guys-only golfing trip. Jim has golfed in the past but I don't know if he'll be up for it now. But he will have fun hanging out with the guys and riding in the golf cart. There are some courses they will be playing that do allow the cart on the fairway. Otherwise, I doubt Jim could walk the course. Arthritic knees.

And I have a whole week to pamper my menopause. Can be up all hours of the night, play the TV as loud as I like, put the computer on speakers instead of headphones to listen to NPR. I am getting some things done. Yesterday, I replaced the guts in a toilet, did some painting of cabinets and shelves to go on the walls, washed venetian blinds. Jim doesn't like that kind of chaos when he's around, because I can't finish one job all at one time, and leave my tools and mess out all day and sometimes overnight. The house is almost completely tidied up from Jim's move in, and now I am working on filing stuff in my office that has collected over the past two years. And I will have to start planning for income taxes.

Sue, the woman for whom I am a chemo buddy, did really well with her first chemo session. She was scared, but once the infusion started, she calmed down and was fine. She suffered through the Neulasta bone pain, and was over all the acute side effects in about 9 days. She is getting her infusions every 3 weeks (I had mine every two), so she will have alot more "good time" between infusions than I did. Her next infusion is a week from now, and her husband will be taking her.

Treatment Buddy

2008-01-06T13:12:00.000-05:00

This week, I get to start a new breast cancer journey of sorts. A woman from my online Wellness Community support group lives nearby, and I will be her treatment buddy. Tomorrow (Monday) she is getting her first chemo infusion.

Sue is 50, and was DX last fall with invasive ductal carcinoma in one breast. The tumor was somewhere around 1.5cm, and she had a lumpectomy. One sentinel node showed micrometastatic cancer. There was a differences of opinion about the nature and severity of the tumor, margins, and micromets, but Sue went with the pathology from two of the three labs that agreed. Had Sue taken the third opinion, she would have been facing a full axillary node dissection, which means the removal of all lymph nodes under her arm, setting her up for lymphedema, the life-long painful swelling of the affected arm.

Sue is going to the same facility that did my treatment--Helen Graham Cancer Center--although a different oncology practice. She will be getting the current standard of care which involves 4 infusions of Cytoxin and Taxotere. That likely would have been my chemo treatment if I had it now, 18 months later. The Taxotere is a new generation Taxol (which I had), and is reported to have fewer side effects, most notably the neuropathy, which I still have. Sue is very happy to avoid the Taxol. She is diabetic, and the steroids that are given with the chemo are likely to mess with that some.

Sue also will be getting a full 6 weeks of radiation. Hopefully, I can guide her through that a little better than I was guided so that she doesn't experience a bad burn.

Sue also plans to get a hysterectomy so that she can take the post-menopausal estrogen suppressing drug, instead of the pre-menopausal drug I am taking--Tamoxifen. She prefers the side effects of that other drug.

Sue has been through cancer before, most closely with her daughter, who has had leukemia since she was 12. Sue is a very strong woman, but she is understandably fearful. She has been told that the night before the first chemo is the worst, and I agree with that. It is a fear of a huge unknown. But she seems as medically and emotionally prepared as possible to face the treatment.

How about a bunch of "ATTA-GIRLS" for Sue?

I "Elfed" Us

2007-12-27T04:32:00.000-05:00

Check this out!

Happy Holidays to All!!!

2007-12-20T14:44:00.001-05:00

This is an interesting time for us. It's just past the one year anniversary of Jim coming home from the hospital (the day before Thanksgiving, last year) and all the memories flood in of how sick he was, how stressed I was, the help we got from Patrick (bless you so much Patrick), my constant fear of losing Jim (either physically or mentally).

But now he is healthy (well there is that osteoarthritis) and happy. I am truly looking forward to a quiet Christmas Day with a wood fire, a turkey dinner, a couple DVDs to watch (I hope there isn't a football game Jim has his heart on watching), and getting snuggly on the couch with Jim and Ennis.

I am feeling so much more internal energy and strength than I have for a long while. However, I still have that troublesome fatigue. I will be taking another "super Vitamin D" pill at the first of the month, and then get tested for my calcium/parathyroid/Vitamin D levels at the end of January.

Jim and I are finally making plans for the Europe trip we had to cancel in 2006 because of my cancer DX. It starts May 10 and ends June 8. It's a "highlights of Europe" for the aeronautically impaired.

We are taking a ship (Cunard's Queen Mary 2) from New York City to Southampton, England. After we arrive, we will head to London and pick up a guided tour. It supplies transportation, lodging, and some meals. We will be two nights or more in London, Amsterdam, Rome and Paris. We will have overnights in Rhineland, Germany; Lucerne, Switzerland; Innsbruck, Austria; Venice and Florence, Italy; and Nice, France. The tour leaves us back in London.

We are really excited about this. I have never been to Europe. Jim and I have always hoped to travel there together. This may be our last chance. Even though this is a fast-paced tour, we understand that we have physical limitations, and may have to bow out of some things. That's fine with us.

For the past week, I have been sitting a diabetic cat named Vickey. She is rehoming from NYC to TN, and the transport continued today, with me meeting Stefani (and Toonces) in Aberdeen, MD. Three more people are involved until her new owner picks her up near Roanoke, VA, and takes her back to TN.

This cat has people issues and is defensive, quick to use her growl, hiss, teeth, and claws. That makes testing her blood sugar and giving her insulin harder and harder as she becomes wary of me because of past "tussles."

Vickey's really cute, though. She's a calico Maine Coon. I have a video of her at the vet (had to get a health certificate for travel) that shows both her sweet and defensive sides:

Because of the Europe trip, my reconstructive surgery has to be pushed back. Right now, the surgeon has no openings until September. In a way, that pleases me because I would like to have the summer without having to recover from a major surgery. I need to garden.

Our best wishes to all for a grand New Year!!

Vitamin D/Shingles

2007-12-07T09:32:00.000-05:00

The endo tests indicated I have a mild to moderate Vitamin D insufficiency. He gave me a 50,000 IU capsule to take, and I will take another in January. Follow-up blood tests at the end of January, and a re-evaluation by the Endo in mid-November.

I must say I feel (cautiously) better. I found yesterday I could balance on one foot without completely falling over. I discovered this when I was attempting the tree pose for yoga.

Jim has singles. We didn't know what they were. An adult recurrence of the chicken pox virus. He hurts, is itchy, and is fatigued. He's on an oral antiviral.

Jim did go to closing on his condo last week, and has paid me to buy into my house, so it is now OUR house. He paid me for half the equity, and we will be sharing the mortgage and utility bills, taking quite a bit of burden off me just when my savings were down to about nothing.

We have both dropped out of the cancer support groups for the time being. It was getting to be "all cancer, all the time."

I hope we will be able to get a Christmas tree this weekend.

Crap, No DX

2007-11-29T15:29:00.000-05:00

Bye bye hope for a simple fix.

My blood and urine tests came back normal on calcium and parathyroid hormone. They have canceled the Sestamibi scan. I have asked for them to have the doctor call me.

I want to know whether the blood indicators can be transient. I also want to know if there is anything else he can do to find out why I am so fatigued and achy all the time.

Probable DX--Hyperparathyroidism

2007-11-20T15:42:00.000-05:00

Saw the endochronologist today. Subject to more blood tests, a 24-hour urine collection and testing, and a CT scan, he believe I have primary hyperparathroidism. The solution is to remove the tumorous gland. (The tumor is "always" benign.)

$3,191 plus $14

2007-11-17T07:29:00.001-05:00

$3,191--the cost of my chemo-induced dental work so far. Plus $14 for each tube of prescription toothpaste. The insurance company got a long appeal letter this week.

Back on Tamoxifen/Condo Sold

2007-11-09T08:51:00.000-05:00

I re-start the Tamoxifen today, after about 2 months off. This is the estrogen suppressing medicine I was on to reduce my risk of recurrence. Now I return to severe hot flashes, insomnia, and foggy brain. Another 4 years, but I may take breaks again in the future.

Just in case my fatigue and muscle aches are from depression, the psychiatrist raised my antidepressant this week.

Jim's condo is under contract, and the financing looks good, so we are counting on it being sold as of November 30 and bringing his things over here a bit at a time. The biggest bummer for me is coordinating two fully furnished kitchens, and finding places to store the usable but presently unneeded items. Later this month, two big burly guys, friends of Jim, will bring over the furniture that we want to keep. The rest of the furniture will go to those guys or the local Cancer Federation.

Thank goodness Jim is not a pack rat (like me).

CT Scan OK

2007-10-31T08:27:00.000-04:00

The CT scan of my lung shows no cancer. "Crappy lungs," says my onc; lots of necrotic tissue from years of smoking. Also, a small area of scarring on the top of my right lung from radiation burn.

I still feel like shit, but that's for the endochronologist to try to resolve. I am starting to think maybe the psychiatrist went too low on the antidepressants, because my symptoms (fatigue and muscle aches and pains) can be symptoms of depression. I see the psych next week.

Medical insurance denied my claim for dental adjunctive care. I am appealing. My onc dictated a "to whom it may concern" letter yesterday. The more I read about dental disease as a result of chemo, the more I wish I had been better warned in advance and taken more steps to present it. There I go, doing the "if wishes were horses" thing again.

Ennis had a dental cleaning on Monday. He was so funny when he came home. Starving, but unable to stand to eat. I should have taken a video of him.

I am reading a book about recovering from loss. The Grief Recovery Handbook: The Action Program for Moving Beyond Death, Divorce, and Other Losses by John James and Russell Friedman.

Today, I start "working" the handbook with a friend of mine who lost both her parents recently. My issue is the loss of my health.

I've read through the first few chapters, which focus on the inappropriate behaviors we have learned from childhood to deal with grief. The six pieces of misinformation the authors offer that they were taught to deal with loss are:

1. Don't feel bad.
2. Replace the loss.
3. Grieve alone.
4. Just give it time.
5. Be strong for others.
6. Keep busy.

Obviously, the authors believe those "bits of wisdom" are bullshit and should be replaced with other behaviors to appropriately grieve and move past loss in a healthy way.

I'm on the chapter that talks about how others are ill prepared to help us deal with loss. They don't know what to say; they are afraid of our feelings; they try to change the subject; they intellectualize ("he's in a better place," "she led a full life"); they don't hear us (they react to the situation, not the emotion); they don't want to talk about death.........

I'll let you know how our effort goes.

Blood Test Results

2007-10-23T09:31:00.000-04:00

Blood draw 10/22/07

Calcium 1.25 (reference range 1.14-1.32), so this is normal.

Parathyroid hormone (PTH) 86 (reference range 15-65), high.

The onc office canceled the Zometa infusion for next week.

Still waiting for results of chest CT scan, and a call from the onc for his "take" on the blood test results. Jim is pissed at me for not being happy with the "normal" calcium results. Who can feel happy when they feel like shit?

Update: Onc called. Resolution? Wait for the endochronogist appt. (Feel crappy for another month?) Keep next week's onc appt. to get CT scan results.

Been a Long Time; Lots of News

2007-10-23T01:45:00.000-04:00

The contractors are out. Finally. They did a beautiful job. I promise; pictures soon. We (or should I say I) still have alot of touch-up painting, organizing the mess that came from shifting storage, and decorating the rooms.

Let's see, I left off with the parathyroid hormone (PTH) test being normal. I saw the oncologist today for follow-up, and my fatigue and pain/ache symptoms are getting more severe. Adding nausea in now too.

Onc said that although my PTH tested normal, that was technically high because with my calcium level, the PTH should be zero. He had blood drawn to redo those tests. He also sent me for a chest CT scan to check for lung cancer. I'm not too concerned about that because if there's anything there, it would be fairly new. My last chest CT scan 5 months ago was clear.

Onc said he thinks it is my parathyroid. My appointment with an endochronologist is around Thanksgiving. I already am in the process of trying to get an appointment for a second opinion from a thyroidologist (a thyroid specialist) in Baltimore. I'm having trouble connecting with that office.

Onc said no to going back onto Tamoxifen (the estrogen suppressor) right now. He said that he wants to get this calcium thing taken care of first.

I went to a Wellness Community program tonight on advanced (metastatic) breast cancer. The oncologist giving the presentation, Dr. David Biggs, said something that struck home. He said that Tamoxifen does not directly cause cognitive dysfunction. However, he said it can exacerbate cognitive dysfunction in patients with clinical depression. My psychiatrist has never mentioned this, even though he knows my problems with Tamoxifen. Might he be clueless?

Oh, yes, the onc also said my bone scan showed trouble with my left temporo-mandibular joint (TMJ)--the joint where the mandible (the lower jaw) joins the temporal bone of the skull, immediately in front of the ear on each side of the head. I didn't ask for details, but that doesn't surprise me. I have had TMJ problems for years (used to wear a splint) and with this current problem with the swollen lymph node in my neck, the TMJ on that side has really flared up.

As for that lymph node, my GP also said it was inflammatory and that I should take Ibuprofen. I am, and that helps. GP also ordered an ultrasound of the neck, and there was nothing remarkable found.

I had my baseline colonoscopy about twelve days ago. The prep really made me sick. I was the queen bitch when I got to the clinic. I wanted no pleasantries at all. I was really scared about going under anesthesia and then finding a problem when I woke up. Shades of my February implant surgery.

I had the infusion of Zometa, the biphosphate, since my last post. I had trouble when the needle came out; it's like I went into shock and couldn't speak because of the intense pain. Very strange. Felt like it lasted about 2 minutes. The Zometa perked me right up, but its effects only lasted about 3 days.

A week ago Friday Jim and I drove to Baltimore to see the new plastic surgeon. It was a hard trip--long, we got lost, and there was a road closure (both directions) on Route 40. Dr. Chang is very gentle and appears very competent. My objective of another surgery was to have the scar tissue on my right side debulked and to have the solitary silicone implant on my left side removed. That seemed to me the easiest approach to return mobility to my radiation-damaged right side while making me symmetrical.

Not so, says Dr. Chang. The only way to return mobility is a skin and fatty tissue graft. Using cadaver-donated tissue is not an option. He must take skin (with the underlying fatty tissue to provide blood supply to the skin) from another part of my body. Preferably my belly. No muscle tissue will be harvested. There is a 96-97% chance that I will regain about 80% of my mobility.

To achieve symmetry, he would remove the left side implant and graft there as well. The result would be a small breast mound on both sides. The surgery will take 7 hours, followed by a 2-hour contouring surgery a few months later. The first surgery will involve 3 days in the hospital; the second is outpatient. The first surgery has an 8 week recovery period, and removes an oval-shaped piece of skin and fatty tissue from my navel to the top of my pelvic bone, from hip to hip.

I was sent home with a CD of before and after pictures to consider. I will be given contact info of a few patients with circumstances similar to mine. We scheduled the 1st surgery for May. That gives me 7 months to fatten up my tummy with nightly bowls of ice cream.

On the dental front, my dentist filed a claim for adjunctive dental care because of my cavities. I got the denial letter today. We expected that. The dentist had saved his "big guns" for an appeal. I am really glad he is working with me on this. He seems really committed to trying to push the envelope on what is dental v. medical care.

I am taking this a day at a time. Right now, there seems no way to plan my life. I have found someone (hopefully) to take over writing the book I was working on when I was diagnosed. Getting the disability checks has stopped the hemorrhaging from my savings, although it will continue to trickle down until Jim sells his condo and "buys into" the mortgage and utility payments. I also need to carve out the time (and brain) to sit down and go through the proposals the Fidelity financial planner gave me for restructuring and managing my retirement portfolio.

I think that's about it. Another dental appointment this week; hopefully the last for a couple of months. The dental work so far has been about $4,500. Jim's 67th birthday is on Friday, October 27. The cats get a vet visit that day. Ennis has been giving me trouble for about a week with his insulin. He's been getting preshot levels in the low 200s, rather than the low 100s I had gotten used to, so he may have an infection brewing. I have never started Lily on her meds for chronic renal failure (CRF) because she is so very bad about meds, won't eat wet food, and won't eat pill pockets. She also seems to have lost some weight. I did change her to a lower phosphorus dry food. Jim said he would go to the vet with me; a birthday road trip!!

Take care, all!!

Any (not just breast) Cancer Awareness Month

2007-10-08T14:02:00.001-04:00

October is breast cancer awareness month. Yes, breast cancer holds a special place in my body (not my heart), but I want to honor all people with cancer this month.

I asked people on the FDMB to help honor family members, friends, themselves, public
figures: people living with a cancer diagnosis, people caring for people with a cancer diagnosis, people who have passed to spirit from cancer.

Here are our messages. Messages of love, of hope, of loss, of survival.

My Father, Vernon

My Father, Vernon, known to his friends as Woody, was born in 1927 and died in 1981. 54 years old.

When I was a young child, he was a vibrant, fun-loving, and intelligent man and a doting father. Life pressures and alcohol destroyed his spirit early in life and eventually estranged him from most of his family. He died of lung cancer, mestaticized to his brain, with only his 2nd wife and his older daughter to call his friends.

He is my hero because, although I had only about 5 nurturing years with him, he gave me the gifts of loving life and learning.

I have a picture but no scanner. He was handsome as a younger man, very dapper.

Linda and Chance's Parents Gerald and Hazel

My Mom passed in Sept. 1998 from lung cancer and my Dad passed in May 2003 from lung cancer. These were the hardest years of my life. They each faced death bravely. I think I've earned the right to preach a little; Please, if you smoke, please try to quit. Try again and again until it sticks. Don't do it for yourself, do it for those who love you so maybe they won't have to watch you die such a death. My parents are missed greatly.

Maximillians Person (Donna's) Family

My father, Garry, diagnosed with Renal Cell Carcinoma at age 29, passed away April 22, 1977. He was a band director and touched the lives of many, many children besides his own with a love and appreciation of music. I still occasionally run into his former students who tell me what an amazing spirit he was in life.

My Uncle Glenn (my father's brother) is a multiple cancer survivor. He is currently battling thyroid cancer and winning.

My granddaddy Bowen (my father's father) has had many types of cancer and all have been new and exciting forms and not a result of earlier cancer. (In other words, he's been *cured* many times.) He's had Melanomas, Lymphoma (twice), Prostate cancer, Colon Cancer, and currently he is battling bladder cancer. He's my hero because he has never given up. He just keeps winning.

My cousin Bonnie (on my mother's side). Was diagnosed with Renal Cell carcinoma at age 29... She is winning her battle against this awful cancer. She's fighting to stay around for her two young girls.

My Aunt Jane (Glen's wife). She has had breast cancer twice and beat it both times. Both of her sisters and her mother have also battled and won their bouts with breast cancer.

Me. I guess I can't be my own hero, but I am the poster child for early detection and regular screenings. I had melanoma (very early stage). I was diagnosed when I was 29. I got clean borders when it was removed. (Those are the two sweetest words in the world *clear borders*!!)

Foxdancer (Rilla)

My colleague Jim just passed from pancreatic cancer a few weeks ago. He was the person who adopted Shahara, the little black rescue kitty I trapped in Seattle. She was his little princess- the best adoption I'd ever made. It was very sudden. He was only in his early sixties, and had just retired about 5 months ago. He was looking forward to traveling and spending time on his boat.

My housemate's father, Henry Powell, passed from pancreatic cancer last year. He and his wife were raising their three grandchildren (housemate's sis is a drug addict). He is sorely missed by his family.

Bev and Mitsy's Father

Was 63 yrs old. Had cancerous tumors on his sides, died 1990 memorial day weekend. Scanner not working so no picture. Handsome man, tall, lean, and raised us after my mother left us.

Sandy and Jake's Family

Currently my Sister is fighting the battle of her life (ovarian cancer). She is my HERO! The picture (she is in the middle with the cowboy hat) is from a benefit for CASA (she became a child advocate a few months ago despite her illness). My Aunt lost her life to breast cancer, my Uncle to liver cancer, my Mother in Law to renal cancer. My Mother is a ovarian cancer survivor and brother non-hodgkins lymphoma survivor. I also have 3 cousins that are cancer survivors, ovarian/bladder/testicular. These family members are all my heroes.

Renee's (renegade500) Dad

My dad was diagnosed with pancreatic cancer January 6 of this year. He died on February 3, aged 75.

In the last 10 years of his life, after he retired, my dad spent his time (and money) rescuing animals in South Florida. He started a nonprofit no-kill animal rescue organization based out of Ft. Lauderdale. They take in animals a lot of other rescue groups don't - usually very sick or injured animals. They rehabilitate them and foster them until they are adopted out.

I know the group has been struggling since my dad died (in part because my dad had so much time to devote to the organization due to being retired), but they continue to do the important work.

At his funeral, a lot of people from various South Florida rescue groups, plus several veterinarians, spoke about his work and how much he will be missed in the rescue community.

Unfortunately, I don't have any digital pictures of him.

Amy'sWinston's Dad and Too Many Others

My Dad, Harry. Was diagnosed with lung cancer when he was 48. He died 2 weeks later on May 26th, 1978, when I was 10. My family says I got more of him than any of the other kids...but I was too young to remember much. They tell me I'm the most like him. I remember him always bringing me balloons, for no reason. He taught me to fish with him when I was 3 and I was his fishing buddy from then on. I don't think any of the other kids would get up go out with him at 4am to fish. I always caught more than he did! He gave me a love for Southern food. He had a wicked sense of humor and could charm anyone he met. He was a big man with a big heart, and I miss him every day.

My cousin Charlie (on Dad's side) He'd been diagnosed with brain cancer in his mid 40's with no hope. He beat it and was clean the last 5 years of his life. It came back...with a vengeance, and he lost his fight last month, passing at the age of 53.

"Mama G." Eleanor Genovese. She was diagnosed with end stage breast cancer and passed this past February after a short, but valiant fight. No matter how bad she felt, she'd greet you with a smile and a dirty joke. She was a feisty, opinionated woman who loved fiercely. She was like a mother to me for many years. "adopted' was never a designation for her, she treated me like a real daughter...all the good and bad that came with it.

Estelle Novis. She battled breast cancer for over 20 years. She lost all her sisters and aunts to breast cancer, and fought even harder on their behalf. She was also an adopted mother to me all the years I was in CT. She started as co-worker, then became my friend, then became like a mother to me. She had me over for dinner every Friday night for Shabbat (sp?) and taught me all about their Jewish traditions. She lost her battle, and left us last year.

Milly Kansteiner. She was an elder care client of mine in Virginia. What trip Milly was! At 80+ she still died her hair flaming red like Lucille Ball, wore funky little socks and earrings, and painted each room of her house a different color from a crayon box. I was with her at a routine Dr.'s appointment when she was diagnosed with liver cancer, and I had to call her son in Alaska and let them know. Through all that followed the next few months, her sons became good, close friends of mine...and I'm grateful for their friendship.

Julie and Maddie Catie

Rachel, one of my dearest friends for over 20 years. 44. Died the day of Mom's funeral. Two dear women. Big holes they've left behind. 3 uncles, 2 aunts, family friends Howard, John, Leon, gone. Now Jerry, a neighbor home with hospice. I hate cancer. Thanks for giving me a place to say it.

And to the survivors! Venita, you and Carol, and Robin, and EVERYONE else out there on this board, my friend Delores in Indiana, my friends John and Ann in FL, you're all my heroes, too, and you're all going to beat it. I am CHEERING YOU ON EVERY DAY. Every day. I wish I could write it bigger. Much love.

Sally & Simon & Sasha's Aunts and 2 Cousins

All three of my Mom's sisters were/are breast cancer survivors. The oldest sister, Aunt Lorna, passed away in 1990 from causes unrelated to cancer. My Aunt Phyllis and Aunt Wilma are both breast cancer survivors and are still living and cancer free. They both live in Nebraska so I am able to spend some time with them.

Aunt Wilma's oldest daughter, Michael, lost her battle with breast cancer at age 55. This was her second bout with cancer.

My Aunt Phyllis's oldest daughter, Chris, passed away this August after a 20 month battle with liver and pancreatic cancer. She passed 4 days before her 58th birthday. She was just a year and a half older than me and I have many wonderful memories of our childhood together. She lived in Chicago. Chris is my special Hero. She fought very hard to beat this cancer. She went through a lot of chemo, radiation and kidney dialysis. All with a smile on her face and a goal to win! In the end, she lost her battle, but had such a wonderful support group of friends and family. From what my Aunt Phyl has told me, Hospice was such a wonderful group there and kept her free from pain. Her employer paid her full salary the whole time she was sick and was very supportive of her. I still grieve for my cousin, my friend.

My Dad had bladder cancer back in 1990, but he was also a cancer survivor. He was 5 years cancer free when he passed from congestive heart failure in 1995. He has always been my Hero for many reasons.

This picture is of my Aunt Phyllis, Aunt Wilma and my cousin, Chris. This was about 6 months after Chris's diagnosis.

Bless you, Venita, for doing this. You are also my Hero. I say a prayer for you everyday. May you continue to be a *survivor* forever!

Heather_Mr.Tubs's Gradma and Mom

My grandma Marian (mom's mom) had metastatic breast cancer. She had a double mastectomy. She died of lung cancer Dec. 6, 1989. My grandmother played an important and influential parental role in my childhood. We lived with my grandparents for a time after my parent's divorce. Growing up we played with her wigs and she was never ashamed of her scars. She showed us her bandages and staples after her mastectomy. She was a fighter. That loss was one of *the* defining moments in my life. I was 12 and it felt like I lost a parent. In my short time with her, she was an example of strength and courage. I will never forget those important painful lessons and she will always be my hero.

My mom was diagnosed with Stage 2 Uterine Cancer Dec. 22, 2005. She had a hysterectomy in Jan. 2006. She's been cancer free for going on 2 years. I'm fortunate to be from a family of strong women. My mother has taught me strength, independence and perseverance.

Marialyce and Sparky's (feathersby's) Family and Friends

My grandmother, Alice, who died of a sarcoma when I was six.

My Dad, Bernie, diagnosed with colon cancer in 1968 and died from a recurrence in 2000. His younger brother, my Uncle Eddie died of colon cancer also.

My Aunt Dot survived breast cancer over 10 years before dying from it in 1971.

My only female cousin underwent double mastectomy in her 30's, have lost contact with her.

One of my nursing school classmates and a good friend died of Lung cancer last year.

My friend Sue, who underwent double mastectomy 2 weeks ago, currently healing and planning other therapies.

Carol-Charlie's Husband Tom (her Caregiver)

My wonderful Tom, who has never complained, has done everything from change bandages, to litter boxes. He learned to care for Charlie the day I was diagnosed back in January of 06... he's taken over the care of feeding and litterbox changing. He cleans house (hired a cleaning lady once a month too) does 90% of the cooking and baking...

He tells me I'm beautiful... when I'm sitting there bald, and fat and feeling sorry for him. When this man looked at me and said..."For better or for worse... In sickness and in health..." He meant every word... and absolutely no complaints.

He'll take me for rides.. (buys me an icecream cone and off we go...) It gets me out... without worry of germs... He takes me shopping, and lets me 'save him money, buying on sale'... He buys a new watch for me, and puts it in a McDonalds bag.... Good thing I didn't eat it..

He holds my hand when I'm scared, and we start planning our trips to meet you all next year when I'm better... (been two years of saying next year... but)

We're going to New England .. Catnip Cottage, Oregon... Chicago.. want to meet the Tennesee girls (and Smokey).. and on and on... we'll be retired and heck... we can drive... my feeling should come back in my feet... We love to drive and sing the oldies... you know real oldies... 50's, 60's, and 70's... Thanks for letting me talk about Tom...

Robin (from Carol-Charlie)

Let's not forget Robin. She fought breast cancer, then had a brain tumor removed and never really even slowed down in helping us on FDMB to help others. She was a voice of strength for me when I was diagnosed, and sanity, when I thought I'd gone brain dead.. (Chemo Brain)... heard it first from our Robin. She remains a great gift to this board.

Then of course there is you Venita... another hero of mine... sadly there are a few of us on FDMB that are fighting more than feline diabetes.

Lets all remember to pray for healing (please/thank you) for all of us who still battle this very scary disease.

Thank you all!!!! I know prayer works... I am still here.

Teresa and Olivia's Father

I can't read these without bawling my eyes out. My father, Jack Hale, passed away on January 12th, 2004, at the age of 68. He died from metastatic thyroid cancer, which he fought for 23 years. He had part of his jaw removed, his hip replaced, and many other surgeries, fighting every day he could to see his granddaughters for as long as possible. He is my hero, along with all of the cancer fighters on this board.

Karen and Splash's Dad

My dad....Jim...diagnosed this past June with esophageal cancer. He taught me to be a strong independent woman so whatever life handed me I would be able to deal with. He has tried to protect me so much as he has ventured through this new labyrinth of treatments and decisions, but I think he has finally realized that it is our turn to take care of him. He is only 68 years young.

On top of this, he is a 40 year bladder cancer survivor. In 1967 the only treatment option was surgery. Chemotherapy was still experimental where it was being used. But his early detection saved his life.....so he could be in mine. (Mom was pregnant with me when he was diagnosed back then)

Damn, My Parathyroid is Normal

2007-10-04T07:30:00.000-04:00

PTH (parathyroid hormone) tested at 28 (range 15-65). So it's not hyperparathyroidism.

We are back to stumped.

Onc wants me to see an endochronologist. Thankfully I found one in the same health system as most of my other docs who takes my insurance. I will see him in late November.

Anyone have any ideas? Elevated blood calcium. Bone scan clear. PTH normal. What could be causing this??

How Cool is This??

2007-10-04T07:09:00.001-04:00

A Buddy Map. Please please do add yourself. Let's see where all our friends are all over the world (although yes most are in the US). You can add a picture of yourself. You can put in your email addy, but it seems to me that doesn't display. It is just used, as far as I know, to send you an email thank you for signing up. Don't put it in if you don't want to; I can't guarantee it won't display.

The first dot is us.

Recognize Breast Cancer Awareness Month

2007-10-03T03:45:00.000-04:00

Notice I did not say celebrate. I will say celebrate once we have "No Breast Cancer Anymore" Month.

1. Complement a bald woman, even if she is wearing a cap, a scarf, or a wig. Even those with regrown hair. (Any woman who has been bald carries a bit of bald with her forever.) Tell her she is beautiful, looks healthy, or just that you like her shoes. Let her know you see her.

2. Click here to help fund mammograms.

3. Click here to create a personalized animated doll to honor a friend, family member, or acquaintance who has overcome or who is fighting breast cancer. For each doll created, AstraZeneca Pharmaceuticals will donate $1 to a breast cancer charity, up to $25,000.

4. Pray (or wish, or hope, or send good thoughts) for an end to breast cancer. Not just a cure, but a preventative.

5. Read these facts about breast cancer.

6. Please do monthly self breast exams, and get annual (or more frequent) clinical breast exams, mammograms, or other diagnostics. (If you are a man, encourage the women you love to do this.) The earlier breast cancer is detected the less debilitating the treatment and the better the outcome. Denial and fear do not detect, treat, or save women from dying from breast cancer.

7. Honor all persons affected by all cancers, including the caregivers. Other cancers do not have their own month, but they present the same burdens for people affected by them.

God, What did I wish for?

2007-10-01T20:59:00.000-04:00

The oncologist himself called this morning. I was away at my bone scan. Jim took the call and it was something about elevated calcium in my blood and wanting to give me a shot so I would feel better.

Long story short, in my case, the hypercalcemia could be from trouble with my parathyroid gland or from metastatic bone cancer. The bone scan as well a parathyroid blood test should give us some info. The onc said to be in his office first thing in the morning. He wants to give me an infusion of Zometa to bring the calcium level down.

My ionized calcium level is 1.41 mg/dl. Reference range is 1.14-1.32.

What I've Been Thinking

2007-09-30T13:59:00.000-04:00

I usually only talk about events here. Today I want to talk about my thoughts and feelings and fears.

I have a quote from Freya Stark in my sig line on the FDMB: There can be no happiness if the things if the things we believe in are different from the things we do. How interesting I chose that quote about a year ago.

I have discovered through my individual therapy that some of the things I believe in are different from the things I do, and that has led to anxiety and depression. I try to stay true to my core beliefs, but the cancer and its treatment has put me in a place contrary to some of them.

What might be the "offending" core beliefs? Hummm, two are work ethic and self-discipline. I simply cannot concentrate enough to complete the tasks I feel I need to (like finishing the book I was writing when I was diagnosed). I feel that not only have I let myself down, I have let others down. And now there's the disability payments. I need the money, but as Laura says: there's a true example of mixed feelings.

I don't know what the solution is, but at least I have now identified the problem. I also have found some coping tools, such as deep breathing and yoga and unconditional life acceptance (UOA).

What is UOA? It's a philosophy in some recovery programs that life isn't "out to get you." Life can bring crap, small crap, big crap, but that crap isn't directed at you. You just happen to be the one in the wrong spot when crap falls out of the sky.

By accepting that crap happens, and that it is not directed at me, I have been able to become a little calmer about the mess my life has become. I try to not take it personally, and just calmly take out the dust pan and broom when the crap falls.

Sometimes, my crap-coping mechanisms are maladaptive behaviors. For example, expressing frustration with anger. That gets me nowhere. I am working on identifying and trying to correct those maladaptive behaviors.

I've also been thinking and talking with my cancer groups about my cancer fears. I have almost got myself convinced that this cancer is going to metasticize, so I would just rather it happen sooner rather than later so that I can stop waiting for the ax to fall.

Part of that belief is coming from how I have been feeling lately. I am tired; flat-ass fatigued. I am having pain in my back and left hip, and have started feeling mittelschmerz (ovulation pain), which isn't right because with my age and the cancer treatments, I shouldn't be ovulating. But maybe with being off the Tamoxifin for a month, my ovaries are starting to "wake up." I also have a swollen lymph node in my neck.

I saw my oncologist on Friday for these physical concerns. He says he believes all my complaints are benign. He took a blood draw to test my menopausal state to see whether we could try an aromatase inhibitor instead of Tamoxifen. The onc thinks the lymph node is inflammatory, perhaps dental, so I will talk with the dentist about that. He gave me medication for dry mouth. Why didn't he do that before? That's been a problem for more than a year. But again, ULA. I'll just take the med and get my teeth fixed and not blame or get angry at anyone for not addressing this sooner. What would blame/anger get me but frustrated?

The onc will have the radiologist re-read my recent abdominal MRI for my ovarian/back/hip concerns. I also will have a nuclear bone scan on Monday.

If it is going to spread, breast cancer usually goes to the liver, lungs, bone, and brain. Women with breast cancer also have a higher risk of gynecological cancer. I worry about these things. I am not obsessed with them, but I am watchful. As I said, I feel it is inevitable for me, and I would like to catch it as early as possible because early means less dreadful treatment. I really don't want to have to go through debilitating treatment again. That I fear more than anything I think. The fatigue of treatment, just remembering that fatigue and pain, makes me teary.

So much has been going on

2007-09-23T15:59:00.000-04:00

So sorry not to update. We've been swamped with construction. I have taken lots of pictures, but not organized them. There is one of the videos I took below. That was one of our busier days.

The patio guys are finished with everything except a little wrap-up. The last couple of days made a real mess in the house with the stone cutting.

The windows guys have only one more day. They put in the new patio door last week. It is GORGEOUS.

On the inside, George and Henry have almost finished with the carpentry and painting in the bathroom, and the electrician and plumber will hopefully come back this week to put in fixtures and the floor guy will finish the carpeting.. George also has to finish the bookcase for the middle of the family room. The laundry room is finished.

Then George and Henry have to build the roof for the patio, and all is done.

More News

Last weekend, 4 ladies from the FDMB and I met up at Ladew Topiary Gardens for a day trip. We had a grand time. Here is a photo of our group.

From left:
Venita
Karen and Angus
TROUBLELAURAK
Stefani and Toonces
WCF and Meowzi

Yesterday, I got notice from Social Security that I qualify for disability. That takes a huge financial worry off my mind.

Stefani's foster kitty SweetPea, a diet-controlled diabetic, is with us again for a couple of weeks. She continue to retain her nickname Pit Bull Kitty. She has bitten me three times so far this visit. Twice when I shooed her away from the bedroom door she is clawing the paint off. Once when I tried to play with a catnip toy with her. Right now, she is roaming the house in Max's walking jacket. I hope to train her to a leash so we might have a controlled introduction to Ennis.

I have an appointment with a highly recommended reconstructive surgeon in Baltimore. Dr. Bernard Chang. I see him for a consult October 18. My chest is really uncomfortable from the scar tissue and implant. I hope to have him make me flat and clean up the scars.

I have been feeling very tired lately, and having pain in my back and hip. After the visit to Ladew, I was down for two days. My dentist also found a swollen lymph node in my neck (as well as 4 more teeth that need work). I see the oncologist for these concerns week after this.

Tha-tha-that's all folks.

A Trip to Cape May

2007-09-08T06:11:00.000-04:00

Cape May is a National Historic Landmark City on the Atlantic Ocean at the southern tip of New Jersey. We stayed for two days at the Marquis de Lafayette Hotel across the street from the beach. We walked, and ate, and rested. We took Ennis along so that he could get his insulin shots. It was his first ever vacation, and he did really well. Especially on the return trip when we crossed the Delaware Bay by car ferry.

We needed a break from the busyness that our lives have become. I have doctor/recovery appointments. We are disrupted by the construction. It was nice to return to find the family room almost completely repainted with the rug in that room and the vinyl in the laundry room down. It should only be maybe two weeks now until the inside is finished.

Subscribe to This Blog

2007-08-29T10:40:00.000-04:00

And to other Internet pages. There are many ways you can subscribe to updates on Internet pages, I understand, but the only subscription service I've been able to understand is from Blogarithm.

If you subscribe through Blogarithm, that service will send you an email once a day on the days I update my Blog. See the Blogarithm box in the right column? Enter your email address, hit the "Click Here" button, and you will be taken to Blogarithm. If you don't have an account with the service, you will have to set one up. If you do have an account, the service will give you a chance to enter this Blog to your list of followed Internet sites.

Given I am not updating this Blog as often as I used to, I hope this makes your life easier.

A Year Ago: Venita Bald and Jim Getting Sick

2007-08-25T09:38:00.000-04:00

I came across this today, the only photo of me when I was bald. That's Jim. The photo was taken about 2 weeks before he got so sick with liver failure. Jim and I look back on this photo now and are amazed at how sick he looked.

The Bathroom Chaos

2007-08-24T15:05:00.000-04:00

This is the chaos going on in the bathroom right now. The plumber has the floor opened, and has just disabled my french draining system. I will have to have one or more exploratory holes opened elsewhere in the basement to site a sump pump. The Mushroom Factor!!

First 2 guys are the plumbers, Steve and Joe (father and son), the next (in green) is Jim, and the last is George, the contractor.

This is my 2nd video ever. The first was minutes before and featured my feet.

Renovation Chaos

2007-08-23T14:59:00.000-04:00

We gave the contractor the go-ahead on the renovation project on Sunday and on Monday--BAM--the bathroom deconstruction unexpectedly began. I was at the Dr. Chemo's office for my 6-month check-up and came home to my foyer rug turned upside down and the banging of hammers. I was immediately sent out for paint. I've made about eight home center runs this week.

It's hard to keep all the project characters straight. We have the contractor and sometimes one or two helpers. We have the patio guy, the shed guy, the plumber and son, the electrician and son, and the floor guy. George, Henry, Andy, Paul, Steve, Steve, Joe, Rich, ???, and Joe. With chemo brain, I can't get them sorted out.

The bathroom and closet (formerly utility room) are stripped to the studs. The entrance door has been reframed to accommodate a 36" door. Jim has chosen the paint colors he wants in the bathroom and bed/family room. The laundry room has new shop lights, most of its new paint, and most of its new ClosetMaid shelving. The plumber will bust up the floor tomorrow. The electrician will start rough wiring tomorrow. The floor guy will put the vinyl down in the laundry on Monday. The shed pad goes down on Tuesday and the shed will be delivered next week.

The rest of the outside work is waiting on the new patio door to arrive, which takes 6-8 weeks. The windows come in at the same time. So we have another wave of chaos to look forward to in several weeks.

Stefani's diabetic kitty foster is here for two weeks, closed up most of the time in the "separation room." Her name is SweetPea. She is OK, though a little standoffish, with people. She apparently hates other animals. During an introduction to Ennis, SP charged him, and luckily I got into the middle. Stefani called SP off, but I did get a little damage to my hands from SP's razor sharp nails. I have never seen such a healthy appetite on a cat, outside of a feral colony or cat room at a shelter. She has the cutest little phrweet instead of a meow. She's been scratching paint off the door jam of her room.

I saw Dr. Chemo on Monday. He apologized that his staff refused to become involved in my social security claim. Said he'd be glad to summarize my peripheral neuropathy condition in writing for my lawyer or Social Security. I'm not sure whether that is worth it because that is such a minor part of my condition.

Dr. Chemo also took me off Tamoxifin for a 6-week trial period. Some of my complaints are possibly Tamoxifin side-effects, such as insomnia, hot flashes, and short-term memory loss. If I feel significantly better off the Tamoxifin, we will do hormone testing to see whether I can be switched to another drug.

This morning I had an abdominal MRI--following the condition of my liver. Results sometime next week. I asked the MRI tech to note for the radiologist that I have had invasive breast cancer, so that he knows (at least from my point of view) that one of the things s/he is looking for is metastatic cancer.

The dentist starts massive restoration work on my teeth tomorrow. My teeth have continued to erode. I am so dreading the word dentures. I have tried most of my life to take very good care of my teeth, and now.....

I really need a break from all of this. The calendar is chock full. Jim suggested that I might want to cut back on some of my counseling because of the time demands of the house project. That wasn't where I was going with my "I'm so busy" comments.

Happy Birthday--55!!

2007-08-11T09:20:00.000-04:00

I was 55 yesterday. Last year about this time my brother Les and his wife Donna were here to visit for a week, feed me, and help around the house. Les called yesterday morning first thing with birthday wishes. He and Donna always remember because my birthday is the same day as their younger daughter's.

For my birthday, Jim gave me a lovely card, a lunch out, and a Nintendo DS Lite with the Brain Age game. I am hoping the game will work to put some of my cognitive functions back together. First I have to learn how to turn the darned thing on.

Jim and I were able to have a fairly low key day compared to how it's been lately. The reason for the recent ruckus around here? Jim has decided to buy into my house. We are starting some renovations on the house to make his living space handicapped friendly and accessible, preparing for the eventuality that that health may yet again pose a challenge for him.

We are turning his half bath into a full bath with a handicapped shower with 2 seats. That is probably the biggest part of the project because the floor is poured concrete that will require jackhammering to break into for the new sewer connections. The utility room off the bathroom will turn into a walk-in closet.

The single roomed dungeon will turned into a suite of sorts when the contractor places a custom built room divider between the "living" and "sleeping" areas. Improved lighting (with the electric panel upgraded to 200 amps), berber carpet, fresh paint throughout. We are going to bust out one double set of windows and the wall below them and replace them with a patio door. To do this, we have to have the exterior graded because the dungeon floor is about 3 inches below the outside grade.

Outside, we will have a paver patio built. It will have a handicapped ramp if needed. The patio will be covered with a roof, and there will be lighting and a ceiling fan installed there. Completing the outside work will be a paver walk around to the rear laundry door and an 8x12 shed to hold from the garage and utility room.

The final part of the project is the laundry room. Paint, shelving, lighting, a linoleum floor, and a portable handicapped ramp for the rear door.

For the contractor, we are using a fellow Jim grew up with. We have seen his work, and it's really good and creative. He's letting me get involved in the design end. My taste for this house runs to the Prairie/Mission style, and I am designing the layout of the wall divider, which will be a shelving/storage/drawer unit with a central feature of an aquarium. We have to start shopping the aquarium today so that the size of that item is all set.

This project (except for the patio door) hopefully will be finished in about a month/6 weeks.

Jim will have everything he needs down there except food. He will not HAVE to come up the steps to leave the house.

Separate from this project but affecting it is replacement of all windows in the house, except the fairly new Andersons in the Florida room. The old windows are original to this 55 YO house, with some really lousy storms. We will be getting vinyl replacement windows, the type with the tilt in sash. I have done alot of research on U factor, the rating element that indicates the amount of heat/cooling loss through the window. We are choosing a relatively high U factor window (although still within EnergyStar criteria) because it appeared to me that a lower/better U factor was not a value for the up-front cost.

We may also have a little exterior siding work done by the window company, which is a smaller family-owned business (thus leading to lower overhead and thus lower costs).

The window project, which includes the patio door, will begin in about 8 weeks and take about a week.

I had my interview with the SSDI-contracted psychologist this week. I went in pretty anxious, wanting to not do too well, but not really knowing where the cutoff might be between seeming impaired and seeming deceptive. After awhile, I just cut out that nonsense and tried my best. The psychologist said he was contracted to test whether I was capable of handling my own funds or whether I would need a trustee. That seems like bullshit. He was clearly giving me a cognitive function test. I felt pretty depressed when I left, but that was going to be the outcome regardless of what or how I did. It's all a matter of uncertainty.

I am getting closer to making an appointment to find a new plastic surgeon. My chest is getting increasingly uncomfortable from the scarring and the implant. I wonder if anyone can make me feel normal in that area again. There is numbness in places, tenderness in places, and tightness everywhere, including from the cording in my armpits. Right now I am eyeing Dr. Bernard Chang in Baltimore (he has a national reputation, having once been the head of plastic and reconstructive surgery at Johns Hopkins) and Dr. Topham at Fox Chase Cancer Center. I will then choose an oncologist at whatever facility I choose for the surgeon.

This week my psychiatrist raised my Lexapro (antidepressant) dosage to 20mg, the maximum. (I am also on Cymbalta.) I am just not sure how much biochemicals help with situational depression. Ann the talk therapist thinks we will be able to cut back to once every two weeks in September.

First Anniversary

2007-07-29T04:05:00.001-04:00

Friday was the first anniversary of my last chemo infusion. Whoo Hoo!! Makes me want to start feeling alot better.

Friday (before we realized it was an anniversary and something to celebrate) Jim and I went to a mastectomy store and I got a prosthesis for the right side. It's basically a silicone "falsie" that goes into a pocket in a "mastectomy bra." The saleswoman did a really great job "matching" me up (given the left side implant is about an inch too far to the left) and in finding a bra style that is comfortable for me. Thankfully, I didn't need a "filler" prosthesis for the left side.

I wore the prosthesis out of the store, and surprisingly felt "complete." The falsie is as "dead feeling" as the implant, so I not only look symmetrical, I feel symmetrical.

This was a big emotional step for me. I had been putting it off for some time.

Luckily, insurance covers needed prostheses once every two years and four undergarments a year.

Jim and I went to a club picnic yesterday. I felt comfortable showing off my falsie in a tank top. I haven't worn a tank top since before this all started.

"New Normal"

2007-07-25T05:33:00.000-04:00

Thank you Laura (among others) for giving me guidance on this journey. Last week Laura said "I truly hope you and the therapist can help you to become the person you really are. I won't say 'your old self' because you aren't ever going to be that person again. None of us are the people we were yesterday, even, but more so for you after so many life-changing events."

I had read, many times, that there turns out to be a "new normal" for most cancer survivors. I thought I would be an exception. I have been fighting so hard to get back to where I was.

I now understand that is an impossible goal. I have been so changed physically and emotionally that I will never get back to the old me. This is a major breakthrough in thinking for me.

Last night, in my cancer group, I asked the others about their "new normal." From what I heard, it seems that finding a new normal might follow the stages of grieving: denial, anger, bargaining, depression, acceptance. One woman with metastatic cancer with an unidentified primary source is SO ANGRY that she has been denied her dreams of and hopes for retirement. Others seemed further along the path; one in depression (just trying to figure out how to juggle the demands of her old/current life with a new normal), others in acceptance.

All the women in the group spoke of having reduced energy, motivation, concentration, memory, and physical strength. The further along they are in the process, the more it seems they have adapted these new limitations into their lives. Those who seem to be in the acceptance phase seem to have much more joy in living than do those of us that are newer to the experience (or newer to analyzing the experience).

In the last two weeks, I have seen glimpses of my having a renewed interest in the future. I have actually thought of going to get that prosthesis. I have considered making an appointment with a plastic surgeon at Fox Chase Cancer Center (Dr. Topham). Last night I arranged to accompany one of the women in the group to her next appointment with Dr. Topham so that I could see the Fox Chase campus and get a feeling for Dr. Topham's practice. I don't expect to go in with her for her face-to-face with the Dr., although I would jump at the chance if she asked.

Jim and I also have planned a mini vacation. In early September, we will go to Cape May, NJ, stay in a hotel on the beach for two night, travel there or back on the Cape May-Lewes Ferry if the weather is good for a boat trip. Ennis will go with us so that he can get his insulin.

Laura and I also are planning an FDMB day trip to Ladew Topiary Gardens in September. It will likely be a group of 6-8 crazy cat women spending the day visiting the gardens and house and having a potluck picnic.

Jim is talking about trying to reschedule the Europe trip we canceled in 2005. This is the trip where we would travel to and from Europe by cruise ship and spend 3-4 weeks on land, mostly in Italy seeing Rome, Venice, and Florence. After Jim got so sick, I thought we would never take a European trip together. Right now, it's seeming possible again. Jim might have to get supplemental health insurance because Medicare does not cover outside of the country.

A 12-day Break; Sorry.

2007-07-17T12:48:00.000-04:00

Yoga. Ugh! It's been way too many years. But the facilitator, Kelly, is very kind and understanding about some of those in the group (like me) having physical limitations. I have been there twice now, and I plan to continue. If nothing else, it's a relaxing (even though uncomfortable) hour away from other responsibilities. A little "me" time.

I also went to my first cancer group meeting last Tuesday, and I found it useful. As the new kid on the block, I was asking alot of questions about others. I got alot of info on two of them. I would tell you about it, but there is a confidentiality rule. But suffice to say that one of the attendees is heading into a rough patch with a lung cancer recurrence. I think I will fit in well there; tonight is my second session.

I haven't had Tai Chi yet. I got the time wrong and overlapped it with a psychiatrist appointment. The psych bummed me out for the rest of the day. I told him that I was having trouble sleeping, and he asked questions and came to the conclusion that my insomnia is a manic state, and thus my DX should be manic-depressive--bipolar disorder. I took exception to that DX, maintaining that many of my drugs, my depression, and my menopause should be considered in "sourcing" my insomnia. Also, when I am up at night, I am not particularly "up." That is, I am not experiencing a surge of energy and euphoria, or irritability. The psych suggested that I research the symptoms of biopolar disorder on WebMD. I've been looking at them and I don't think that is me.

I spoke with Ann, my talk therapist, about it the next day. She also disagreed. She said she hasn't seen any manic signs about me.

Yes, I can be a high achiever, but manic? Nope. As Ann advised, and I'm doing, I'm not owning that DX. And Ann found it interesting that the DR. didn't put that DX in my chart.

Ann had given me the week off from any homework, so we just chatted about the bipolar DX and the fact that Jim wouldn't let me have the week off, insisting that I finish the 2006 taxes. They are now getting close to done. That will be another to do off my list.

I got about 8 hours of weeding done this past weekend. So much more to do. Some weeds in my herb bed are more than 4 foot tall. I relax when I'm gardening, even if it's weeding.

This morning was a disaster. I went to the dentist because my teeth have been eroding. He agreed, said that all 12 of my front teeth (incisors and canines, top and bottom) have lost enamel on the back and the edges. (I have never before had any problem with those 12 teeth.) All four premolars/molars on my bottom right have chipped cusps. Dental caries (cavities) is setting in. The dentist believes this is from poor dental hygiene during my dry mouth period. He said I caught the problem early. The dentist saw me in late February, and there was no evidence of this at that time.

I asked the dentist whether he could discount any of this work. I have appointments for 3 hours of dental work and knowing his prices that is in the $1200 range. He was very kind and told me not to worry about it; it is only money. I wasn't sure what he meant, but when I checked out, there was no charge.

The dentist also looked at a small growth on my gum. It's been there about a month. He said it was likely benign, but that I should have an oral surgeon remove it and have it biopsied. Phone calls to insurance. Phone calls to oral surgeons. The closest oral surgeon that participates in my medical plan is at University of Penn in Radnor, PA; about 1.5 hours away. I will have two appts with him. One for a consult and to complete the paperwork for insurance's pre-approval. The second for the surgery.

At the same time I am trying to build myself back up, I am falling apart.

Jim is doing very well. He is mentally sharp as a tack. His blood values are mostly in the normal range; still some minor problems with some liver and kidney values. Still my miracle man. His only complaint is the arthritis in his right knee, and based on good bloodwork, his DR today approved him upping his daily prednisone from 5mg to 10mg.

July 5, 2007

2007-07-05T02:48:00.000-04:00

I had to pull out the calendar to figure out what I've been doing. I have completed the questionnaire for SSDI and reviewing the draft of my will. The 2006 taxes still await my attention (UGH!).

June 25 I saw Ann, my talk therapist. I had, as she asked, scripted three conversations with my anger. I discovered that Anger is male, and protective in a patronizing way.

Anger showed me he had been in a white-hot rage at Dr. Half-Boob. Some of the statements he made about that Dr.:

He let you suffer through 11 months of pain and fear and infection without telling you that you had little chance of making it to the “finish line.” That was unconscionable.

He didn’t give you the news himself; he let some lackey do it for him. That was unforgivable.

He never apologized or showed any empathy. That lacked both morality and character.

He was holding me close to help me through the trauma, but he understood when I told him he was smothering me. He then backed off considerably.

He helped me understand that I was holding onto him because I am anxious, even scared, about the future. First about the cancer and what survival statistics for Stage IIIA breast cancer might mean for me. Second, and far more important, is my anxiety about the “solutions,” if any, to the mess I call my chest. How can I trust another reconstructive surgeon to paint a realistic picture of my possible outcomes? I came to understand that many doctors' "I'm very busy and important and can't spend much time with you" attitudes intimidate me.

I haven't had scripted conversations with my Anger since, but I now know that he is always with me and looking out for me. And he is now calmer in dealing with other health care professionals.

For example, the day after I saw Ann, I saw my neuropathy physical therapist, and for the third time, I asked her to help by filling out the lawyer's questionnaire about my physical condition. She point blank refused, while at the same time saying she would do anything "within her power" to help me. Frustrated and feeling Anger, I became upset. I did not want to get loud (there were other clients in the place), so I told her I had to leave. She held onto my arm to keep me there while repeating what she had said about not being able to fill out the form and wanting to help me. I kept quietly asking her to let me go. She finally did and I left.

I called later that day to cancel all future appointments and explained that I just wasn't getting anything out of the laser light treatments, and it was too much to travel that far. The receptionist kept saying that the therapist would have to see me or talk to me to have information for my "discharge." I kept saying I didn't want to talk to her. Finally, the receptionist "heard" what I was saying and stopped insisting.

This series of events hung heavy on me into the next day and I started dissecting what happened. I came to realize that, even though I was upset, I did act rationally in removing myself from the situation and in quitting therapy. I came to realize that my quitting the future appointments was not directly connected to the SSDI "conversation." It was simply the final straw that helped me see how stressed the 4 hours, 3 times/week, going to, returning from, and spending at therapy was making me.

Jim explained that I likely hurt the therapist's feelings by quitting, and he suggested I call to explain it to her. After a few days I did that. Turns out she was not hurt (or at least she didn't own that she was). Instead, she just repeated and repeated the same "party line" she had given me in the treatment room. Just hearing what she was saying transported me back to the blowup event, and helped me to really understand that she simply was not listening to me.

Even though I am at peace with quitting therapy, the cloud of the event hung over me for more than a week. I had used up so much energy on the therapist that I had little left for anything else. I became a slug all week. When I saw Ann again on July 3, I had to explain why I hadn't continued my scripted conversations with Anger (my homework assignment). Ann validated my feelings and actions and when I asked for my homework assignment for this week, she said she was giving me permission to do NOTHING for a week, but to rest and regain my energy. I like this assignment.

I have decided to go to the Wellness Community for breast cancer group sessions and for exercise (Tai Chi and Yoga). I need to network for another plastic surgeon, and TC and Yoga can, I think, help to replace the neuropathy therapy. My first Yoga class will be this morning.

I have been seeking out a new plastic surgeon. I called Fox Chase Cancer Center in Philadelphia (an NCI comprehensive cancer center), and the chief of reconstructive surgery there, Dr. Neal Topham, is willing to see me. I also have collected names of surgeons in Baltimore, MD; Exton PA; and Voorhees, NJ. The one in NJ has a specialty in wound care as well as plastic surgery. All three interest me, but I believe insurance will only pay for two opinions. My radiation oncologist also is seeking out the name of a plastic surgeon at Johns Hopkins in Baltimore. He likely will come up with Dr. Navin Singh.

Enough for this late morning. Thanks for reading such a long post.

I've been Skyped!!

2007-06-23T08:49:00.000-04:00

Skype is a pretty nifty internet product. You can use it to have free text and voice chats with other registered Skype users--for free. I joined yesterday and talked with Steve in London. You need a microphone and speakers (better yet, a headset) connected to your computer to hear and speak. I got a pretty nice headset from Dell for <$20, including shipping.

You also can make calls to phone lines through your computer and allow phone lines to call you through your computer. That is not a free service, but if you want that, you might be able to find a "plan" for you at a reasonable rate.

Ever had to make a phone call and your teenager on the land line and you cell phone battery is low? You can use your computer and Skype.

You can contact me if you are a Skype member using the button in the links section to the right. (I have not signed up to receive incoming phone calls using Skype.)

Summer Solstice

2007-06-22T01:24:00.000-04:00

Summer solstice used to be one of my least favorite days. It meant that all planting of spring/summer plants was over because they would not have time to bloom/bear fruit before the days became too short to provide adequate sunlight. Also, the days would start getting shorter, giving me less time in the gardens, and the shadow of the house would start moving back over the vegetable garden.

I didn't feel like that today. I am starting to feel like I am just waking up from winter. I am trying so hard to get out of this depression and I keep hoping I get there before all of summer is gone. I only have July and August left, though, and that may not be enough time. That kind of kicks me back into hating summer solstice.

I have had two PT appts this week and have another tomorrow. Only 2 more weeks before I "graduate," unless these laser treatments start doing something for my neuropathy. I can work on balance and strength exercises myself.

I saw Dr. Cutter the breast surgeon for my 6 month follow-up today. Nothing remarkable. I go back in a year.

I also saw my psychotherapist. We get along pretty well. Neither of us want to waste any time getting me "recovered." She does cognitive behavioral therapy, which is the style I'm used to. We started in on my anger at my cancer team, particularly Dr. Half-Boob, for the shape they left me in. After hearing the details of the story, she didn't think my white-hot anger was at all irrational, till I got to the part of where I am angry at myself for not asking the right questions. She even suggested that I consider a malpractice suit, but I am not a litigious person.

My homework assignment is to type out a conversation between myself and my anger. She said I might be surprised at what I learn about my anger. She said I could share it with her if I wanted to, which I think I will. I have started it.

I lost my calendar today, and did not freak out too much. I put a message into the place I hoped I might have left it, and proceeded to call our health care professionals to get appointment dates to rebuild the calendar. Finally I tried the place again, and they had it!! I got all of next week's appointments from the woman, and asked her to drop it into the mail to me.

I plan to curve Ennis this weekend. I have never curved him on Levemir. I doubt it will be a 24-hour curve, but we will see. Maybe a mini-curve for the overnight cycle.

I have taken all of my pills, on time, for four days now. I want to thank Jess for that. She got me a pill holder that has slots for 7 days of pills with slots for 4 pill "times" each day. Pretty nifty, but even more nifty is the timer that cames with it. I can set it to sound an alarm 6 times during the day. I shoot Ennis on the 8s, and now I take the bulk of my meds on the 8s, so two alarm times are serving double duty.

Have a nice weekend all.

Just Another Trash Day

2007-06-20T06:51:00.000-04:00

Wednesdays are trash day.

The best news I have is that the chronic diarrhea seems to be over. I took myself off the Levbid that the GP had prescribed and that wasn't doing anything but giving me dry mouth. I tried Metamusil, as suggested by Jim. Even though it is labeled as a laxative, Jim said it works both ways in his experience. I drank a glass everyday I had diarrhea, and within 4 days the constant diarrhea had stopped. Now another week later, I have solid stool. Who would have thought? I have been fighting this problem since last fall.

I have finished and submitted the questionnaire for the SSDI lawyer. It was a downer for me trying to remember all the bad things that have happened and all the negative symptoms and conditions I have been through. And then to paint them in the worse possible light so that my claim would come off positive. I am working so hard now to get better, that kind of felt like a setback. But I need this SSDI. My savings (except retirement) are fast disappearing.

I don't think I've mentioned it but I re-found an old friend, Elaina. She was my department director and direct supervisor when I did collection acquisitions for a public library after I graduated college with an at-the-time worthless journalism degree. She was always so very encouraging and supportive of me, and we really connected on a personal level. She hosted the wedding shower for my first marriage.

I don't know why or how we lost touch, and we both guessed it had been maybe eight years, but we stepped right back into it like it was yesterday. And true to her form, Elaina now has five Newfoundlands. I find that amazing. She asked me to visit (many states away). Perhaps I should, and take Ennis along to see what he thinks of 5 Mastiffs.

But, anyway, Elaina and I have spoken maybe 4 times since reconnecting. We have many feelings in common about our lives right now. Thank you Lanie for the chats and the caring.

Jim and I have started taking short walks in the neighborhood, just once around the circle in the morning before it gets to hot. He walks slow as a snail. I mentioned that to my GYN yesterday, and he said not to think of the walks as an exercise, so much as some shared time with my husband and a chance to observe nature around me. My GYN is such a sweetie. I will do that today, if we walk, and I am sure I will enjoy the walk so much more.

I see my PT twice this week and the breast surgeon tomorrow. I am starting to think about having this mess on my chest cleaned up. All the scars on the right trouble me because, without daily stretching exercises, the scars really righten up and restrict range of motion. I would like to find a reconstructive surgeon who could cut all the scars away and use the excess skin from the left side (after removing the implant) as graft for the right side.

I would have to stop smoking again (yes, for you who didn't know, I started up again when Jim was so sick) so that my vascular system is at top performance for skin grafting surgery. But I do need to stop smoking again. I did make it 7 months.

The psychiatrist put me on a nighttime antidepressant/sedative (Trazodone) to help my sleeping. I was dizzy the first dose, but OK since then, and I have been sleeping better. Sleeping better = feeling better = eating better = getting better.

There was something else I wanted to say, but I have forgotten it. I'm sure as soon as I publish, it will come to me.

We're Still Here!!

2007-06-16T05:50:00.000-04:00

I've been busy trying to fill out this damned form for the SSDI lawyer. Why doesn't she just ask the same questions in the same way Social Security did?

Jim finally got his DRs to put him on a small dosage of prednisone for his osteo arthritis. Other than achey knees, he has no other medical complaints. He can't take non-steroidal anti-inflamatory drugs (NSAIDs) because of his liver condition. He's thinking about asking his GI DR for a CT scan of his liver so he can know whether there has been any regeneration. We feel like there has been, given his vastly improved (some might say seemingly normal) condition, even though lots of folks told us his liver was too far gone to regenerate.

I had neuropathy PT 3x this week, and I am doing somewhat better with my balance. "Deadness" in feet and fingers seems about the same. I also met with the psychiatrist, who wants to change my antidepressants--again--but I told him he has to talk with Dr. Chemo for an OK.

I met with the psychotherapist for the first time. She's maybe my age, maybe a little younger, and we are both straight shooters so we got along pretty well. I spilled my guts. Having been through therapy I know how to do that and how important it is to cooperate with the therapist and not fight her. She was fascinated with my story; she seemed amazed I was still alive and sane. She asked me my goals of counseling. I hadn't thought about that before, so I shot from the hip. Probably my "first thoughts" are the best.

1. To resolve my intense anger with the plastic surgeon who brutally maimed me. On reflection, the breast surgeon and radiation oncologist are part of that as well.

2. To resolve my feelings about living with Jim. I don't want anything to up-end our marriage because I love him dearly and need him greatly.

3. To resolve my guilt about having lost my career. Guilt might not be the best word for what I am feeling, but there are certainly strong feelings there. I have always been proud of my career and how I excelled with it. I achieved not only financial stability but also significant recognition of my abilities. That's all gone right now, and I want to get it back.

We want to wish a happy 51st birthday to Robin. I love you Robin, and how much you help me.

Jim's Little Adventure

2007-06-08T04:17:00.000-04:00

Jim had his first colonoscopy/upper endoscopy yesterday morning. He dislikes DRs and procedures, so he was nervous, but he is better with them (after 3 months of hospitalization) than he used to be.

Only one polyp that will be sent for histology. A small internal hemorrhoid and an area of abnormal mucosa. The DR told Jim that it was a pretty "clean" colonoscopy. Also no varices on the upper end, which is good news because they are common in people with liver disease.

I continue to be amazed at my miracle man!!

Now if we could do something with the osteoarthritis in his knees.

Because Jim had eaten little in the 2 days leading up to the procedure, he was pleased when I made him lunch and dinner (chicken piccata, yum). I even ate some chicken.

I'm home!!

2007-06-05T12:13:00.000-04:00

My trip to see my brother was pretty uneventful. Flights on time, no problems with my meds. I was put to work on the reconstruction, but they didn't task me too hard!!

Jim did great on his own and was very successful in caring for the cats and giving Ennis his insulin shots. Of course, Ennis woke Jim up 2x/night for food. Jim went along with it. Ennis spent alot of time with Jim on the couch, but now he's relocated to my desk. Jim didn't tolerate Lily banging on the crack room door, and he got her so that he would put her in there in the morning and let her out in the afternoon without a peep from her. Of course now that I'm home, she's back to banging.

It reminds me of the Helen Keller story where Ann Sullivan finally learned to control Helen, but then Helen went back to her wild ways when reunited with her parents.

I have nothing planned this week. Jim has a colonoscopy and upper endoscopy on Thursday, and starts to adjust his diet today to eliminate fiber/roughage. Tomorrow clear liquids and the stuff he needs to drink to clean him out. This will be so pleasant!!

Nothing happening in the breast cancer arena until June 21--a meeting with the breast surgeon.

Take care all!

I've Been MIA and That will Continue

2007-05-28T07:18:00.000-04:00

The rest of the week's appointment went pretty much without incident, whatever they were. I have no short-term memory and I can't find my calendar right now.

I have decided I need some time away so I cleared a few minor things in my calendar and on Thursday May 31 am heading down to see my brother for a few days. He's completely rebuilding his living/dining/kitchen area, and a little physical labor will do me good. I don't have an actual return date yet, but I am hoping for Monday. And his wife Donna will certainly feed me well. It's always good to be in the arms of family that you love.

Jim's going to have to survive on his own, although we did some pre-cooking yesterday. He's chronologically challenged when it comes to computers, so he won't be able to give updates.

My larger concern is Ennis, who needs insulin twice a day. But I am trying to get him reasonably regulated in a highish range on once a day dosing so Jim can just use prefilled syringes. Better too high than too low. And I see no way to teach Jim to test Ennis's blood glucose level and the make decisions about dosing.

I sure hope the airlines won't give me grief about all the meds I have to pack along.

A better day than most, almost

2007-05-23T18:53:00.000-04:00

Jim and I both had a GI DR appt this morning. Jim drove, which was great, because it relieved alot of physical and concentration problems for me.

The GI DR thought Jim was doing great. He took Jim off the lactulose, the ammonia binding laxative that was helping to keep his mind clear. Jim's major complaint was the osteoarthritic pain in his knees. The DR agreed to let Jim's GP prescribe Celebrex, a nonsteroidal anti-inflamatory drug (NSAID). GI DR said 2 to 3 weeks on that, and if that didn't relieve the pain, then a move to a steroid drug, probably low dose prednisone.

GI DR agreed that topical ointments, and Jim has tried 5, do not work, and neither does glucosamine.

GI DR also scheduled Jim for a colonooscopy and upper endoscopy in a couple of weeks. Said he is healthy enough for it, and he wants the UE to check for bleeding in the stomach. After that, Jim goes back in 6 months. We continue to forget to ask for Jims Hep A and B vaccines, and even though I make the appts to include them, that never seems to be on the DR's to do list.

My turn. The GI DR said my last liver CT scan showed another spot and some fatty deposits. He asked why I was continuing to come to him if I would not eliminate my alcohol consumption. I didn't know what to say. It was like he was firing me. He did set me up for a liver MRI in 3 months, but I likely won't go if I haven't gotten my self-destructive behavior under control. I don't want to waste his time, which is what he basically was saying. I know that fatty liver also comes from not eating, which he failed to validate.

He also said he would not give me a colonoscopy or upper endoscopy, which my GP had wanted to check out my chronic diarrhea. He said he would not perform the procedures on someone actively drinking, and that in his opinion, the diarrhea is solely caused by alcohol. Hello? Stress, depression, not eating? I am starting to not like this DR, and even though he was the one who held onto hope for Jim when he was so sick, I'm not sure I want to go back for myself. He suggested maybe I could work with my upcoming psychiatrist and psychoanalyst on my alcohol abuse. (Hello? There's also anorexia and depression; I have a whole list for those folks.) But I can't blame him for feeling frustrated that I am not taking care of myself. There are lots of people frustrated with me.

Including my new PT. She is such a bubbly personality, and I have never seen a therapy clinic with as much personality as this. I think they need a shop cat. Lisa also was suggesting today that she was ready to fire me. She said that if I won't eat, she can't help me with strength training, which she thinks is vital to my balance and hand movements. She said I should get yogurt, cottage cheese, protein drinks and bring them to put in her fridge so that I could have them before or during PT sessions.

After PT, I went to the grocery and got not only what Jim had put on his list, but also some "snacks" for me. I am sure she will be so proud of me. I don't care being fired by a DR, but I don't want Lisa to fire me. She is sincerely trying very hard to help.

Oh, and asshole Dr. Chemo's office. I called today for a refill for magic mouthwash because I have mouth ulcers and everything tastes like cardboard--again. While I was gone, Kernie the gatekeeper, called back and told Jim I had to call back because my message from LAST WEEK was not clear. I hate that woman. She is the one who would not let me talk to Dr. Chemo about needing to see a neurologist to support my SSDI claim.

I am looking forward to the psychiatrist tomorrow. I hope. And to later meeting with his psychotherpist. I need help. And I keep trying. But sometimes it seems like I get shut down more than I get helped.

I do hate to complain about my med professionals, and I do hate to be in the place I am, but that's where I am. I hope for a breakthrough soon. This is NOT who I am.

Raised toilet seat

2007-05-23T08:45:00.001-04:00

Forgot to tell you I got one for my bathroom last week.

What a joy at night with the stumbling. Now I need to get a grab bar inside my shower. Need to put another call into handy neighbor Curt.

Another fun filled week

2007-05-22T06:40:00.001-04:00

Haven't showered or been out of the house for 3 days.

But the fun starts this morning.

Tuesday: intake with neurologist, PT, grocery shopping. Jim stays home to let the cable guy in.
Wednesday: GI guy for both Jim and me, PT
Thurday: car appt (oil change and ABS isn't working), intake with psychiatrist
Friday: PT

I have been jamming so many appts in. Set up one for my initial bone density test, set up 2 in a few weeks for a new psychotherapist/eating disorder specialist. Have to call my opthamologist for my 2-year check up (and I need it).

I am exhausted!!

2007-05-22T06:40:00.000-04:00

Here's that misssing post. I wrote it May 16, 2007. It was in my draft box, so it may be a little sloppy.

This has been and will continue to be the week from Hell. Next week promises to be the same all over again.

Yesterday, I took Ennis to the vet for his little poisoning event last Friday. Blood was "clean," so no permanent damage done. Follow-up in 3 months. That little poisoning event costs me $200 I didn't really have to spend.

Today, the new PT for the 3rd time. Did the anodyne (laser light treatment) on both feet and hands, hand massage, finger exercises, used a vibrator on fingers and feet, stand-in-place balance exercises, and 6 minutes on the bicycle. And while I was waiting for her I did some of my arm range of motion exercises.

Know how you legs get wobbly after a long slow run. Well, I ceratinly didn't need more wobbly.

Then off to the thoracic surgeon, but not right away. There was a 2-hour break between appts. Heading over to a shopping center, picked up some cat food, checked out the food choices (got a bowl of soup and bread), and then visited a kitchen store. Bought some of those forms you can use to make perfectly round eggs.

Still got to the cancer center an hour before my appt. Got my CT scan in the X-Ray dept, but couldn't fill out the paperwork. They filled it out for me and I only had to sign it. More paperwork for the surgeon. I hadn't brought an updated list of meds. My brain and fingers did not want to coorperate, so I only put in the minimum.

Surgeon said the CT scan looked good. Only a very small shadow where the "unknown item" had been last summer. But he agreed to sign me up for another CT scan in 6 months. I think it might just be this DR. He is so very easy on the eyes, and has such a positive attitude.

Tomorrow, another long haul to a prosthetic store. Friday, only PT again.

Next week, GI DR for Jim and me, intake with a neurologist, and PT 3x.

I thought I did an update

2007-05-20T03:21:00.000-04:00

but I guess not.

It's been a kind of, sort of, busy week. Through Wednesday it was appt after appt.

Saw the thoracic surgeon. The scar on my lung is hardly noticeable on CT scan now. Wow, that DR is easy on the eyes, isn't he Betty?? (Betty knows Dr. Panasuk.) A follow-up in 6 months.

The new PT is working out pretty well. I no longer have the trembling in my hands. Freaked me out one morning when I pointed the mouse and I actually could do it.

Still dead fingertips and feet, but they seem less dead than before. Still stumbling around and dropping things. I do so want to get my feeling back.

I did not go for my PT appt on Friday. Just too out of it to go an hour each way.

Jim's condo has another open house today. And for the first time, the open house announcement is in the newspaper, YESHH. Finally the realtor is doing something.

What else? Still not eating. Wednesday I weighed in at 109.5. Down 1.5 lbs from last week. This really sucks; I was 135 on Thanksgiving. Julie sent me info on a local DR who is an eating disorder specialist. I believe I am anorexic, as I have been twice before (without treatment), but this time I want someone to guide me out. I want french toast!!

Next week: PT 3 times, appts with the new neurologist and the GI Guy. Another freakin busy week. Too much driving.

I will put in labels for this later.

Today's Appointments

2007-05-14T18:55:00.000-04:00

Psychotherapist. I don't feel that she is very helpful to me at this stage. And the eye rolling and head nodding really drive me nuts. I was really hoping the psychiatric center would work for me, but as you'll read later, it won't.

Physical therapy. Ouch ouch, and really antsy sitting there in a chair with my feet on an ottoman and wrapped with the laser light treatment pads on my feet for what they said was going to be 20 minutes but felt like 45. The toes on my right foot started cramping. Some hand and foot massage. Then balance exercises. (The PT did not do the laser light treatments on my hands because she said she wanted to call the manufacturer about lymphedema risk.)

I desperately need balance. I fell again last night, stooping to get ssomething from the bottom shelf of the pantry. Down on my butt. Had to call Jim for help getting up, and he put me, and Ennis, straight to bed. UGH, I was in the middle of fixing dinner, and Jim had to go without.

The Rockford Center. They only do inpatient and day treatments. The intake counselor (Bob, no last name on the name tag) suggested day treatments, but it's 6 hours a day, 5 days a week, for up to 6 weeks. There is no way I can do that! Bob couldn't "recommend" a private psychiatrist for me, but he did give me a list of those in the area. He also said I would continue to need to use a psychotherapist for talk counseling. Bob said psychiatrists around here only do medical management.

I was googling for psychiatrists using search terms Delaware, psychistrist, and cancer, and found one not too far from me who in 2004 testified in a hearing about this state's high cancer rate in from of the state senate. He mother was a cancer victim (don't know what kind of cancer). I will give her office a call tomorrow.

If she can't take me, maybe she can suggest other psychiatrists, and maybe even a "talk" counselor, whether a psychotherapist or a social worker, that specializes with cancer patients.

Have to go. The pizza's here. Too exhausted from the day to cook. It takes alot of concentration to drive that far and have that many appts in one day. I should know better.

BTW, Ennis goes to the vet tomorrow, to check his kidney functions after the overdose. I thoroughly cleaned my office today, and could not find any of the missing capsules. So it looks like he scarfed 600mg of Neurontin and a Prevacid. Asshole!!

Not Looking Forward to Today

2007-05-14T06:44:00.000-04:00

Psychotherapy at 10.

Physical therapy at 12.

Psychiatric intake interview at 2.

And these are an hour or more away from home. I have to start google mapping to find how to get from one to another.

Take care, all.

Wonderful Article on Chemo Brain

2007-05-13T11:10:00.000-04:00

This is so me right now. Be sure to check out page 2.

I Poisoned Ennis

2007-05-13T09:46:00.000-04:00

Darned PICA cat.

Friday night, I put my meds on my office desk, left to do something else, and when I got back, Ennis had left his desk spot, and my pills were scattered, some still on the desk, some on the floor, some MIA.

I "replaced" the missing ones and took them.

An hour later, watching TV with Jim, Ennis came down the stairs, stumbling like a drunken sailor.

OMG. I took him to the bedroom, got him food (he wolfed down 1.5 cans FF), and a litter box. Then he went into a deep sleep.

About midnight Deb415 called. Bless her heart, despite her grief at losing Gizzy the night before, SHE called the SPCA poison hotline for me. Twice. They suggested an ER vet (Duh?), but we don't drive at night. That would have been 3 of us dead. So they gave us "normal" heart and respiration rates and temp to watch for.

Jim watched Ennis until 4am while I slept. He would stand Ennis up and shake him every 20 minutes. Then I watched Ennis, although not as attentively as Jim had. About 6am, Ennis stirred (yessshhhh!) and wanted off the bed. I put him down. Tried to hold him in the litterbox. Tried to give him food and water. He laid down on the floor to sleep more.

The missing meds were 2 caps of 300 mg Neurontin and one cap of Prevacid. The SPCA vet and the local ER vet were both concerned about the Neurontin. It is a med I take for my neuropathy. Kris was kind enough to research that it takes way more than 600mg of Neurontin to kill a mouse/rat, so I felt better that an 18 lb cat could come out of this OK. However, there is potential for kidney damage.

Ennis will not be allowed back into my office until I thoroughly vacuum the floor, which I plan to do today.

This is now Sunday am. Ennis is still alive even though he hasn't seen a vet. I spoke with his vet yesterday, and the vet said 200ccs SubQ fluids daily until seeing Ennis on Tuesday. Ennis took the fluids very nicely yesterday. He is eating minimally and continues to be a bit wobbly, but is so much better than he was.

During this adventure, I couldn't get enough blood to test his sugar, so I didn't give him insulin. Finally, at +37, he tested 297 so out came the Levemir as well as the R booster.

Thanks so much to everyone who held my hand during this crisis.

Why won't he take his own meds but he will eat mine?

My GP appt

2007-05-11T12:17:00.000-04:00

Saw her this AM.

She's on board with my SSDI claim, and agreed that specialists are more effective than family practitioners. She agreed to make the referral to the neurologist, and agreed I should seek treatment through the Rockford Center to a psychiatrist. She also upped the dosage of my anti-depressant, saying that a few days upped dosage before the mental health assessment might give them something more to deal with.

She said Dr. Chemo, who has never called me back, might not get on board because he has lots of patients with breast cancer who do not fall apart, so maybe he doesn't think my situation is legit. (WTF????) But GP said I had situations (like the failed implant and my sick husband) that many breat cancer survivors do not have to deal with.

I cancelled my new PT for today. I just cannot drive myself an hour away and back. Too much.

If looks could kill, Jim would be dead right now. He gave me grief about "not being sincere about the PT." He didn't offer to drive me.

Edited: Give me a break! After Jim left the house, I went to bed for a 4-hour nap. Big time bummed out about Deb losing Giz. And my calves hurt. I think from the balance tests the new PT did on Wednesday.

Deb lost her Gizmo last night

2007-05-11T08:59:00.000-04:00

Link to FDMB. So so sorry Deb. Soar Gizmo.

GYN appt

2007-05-10T14:10:00.000-04:00

My GYN referred me to a 24-hour assessment and referral service that treats folks for, among other things, acute depression. GYN apparently refers other patients to this place because of post-partum depression. This was the first time he asked to look at my chest, though all these months of surgery, etc. He agreed I would need alot of scar massage on the right side to break up the "grip" the scar has on my chest wall.

I see my GP tomorrow. In an email today, my SSDI lawyer has strongly suggested that I try to get a neurologist to evaluate and maybe treat my neuropathy. So I will press my GP on a referral; Dr. Chemo won't do it. I have an appt with the neurologist, but she won't see me without a referral from another DR.

Lawyer also thinks my GP is kind of useless to the process. The more specialists that sign on, the better.

I told GYN that I hadn't listed him in my group of DRs on the SSDI form, but he did come up in the final remarks session for prescribing mammo and referral to Dr. Cutter. Therefore, he may be called upon to supply records. He said no problem. He would be happy to have his office send the appropriate paperwork.

My GYN is my favorite DR. He is cute and hugs me several times each visit. And always checks for how I am doing "overall." He was very surprised at Jim's recovery from liver failure. I think he and his nurse were expecting me to tell them that Jim had passed. Nope. He's down in the dungeon napping. I wish I could nap, but an occupational therapist is bringing a seat riser for my bathroom toilet this afternoon.

I need to call neighbor Curt again about putting some grab rails in my bathroom. I suspect that the message I left on his machine 2 weeks ago got "lost," what with a wife and 2 teenagers. Curt gave me his cell number because of problems like that.

Today's appointments

2007-05-09T18:54:00.000-04:00

Jim had his GP DR this morning. GP said Jim's blood tests were "stellar." We didn't ask for a copy of the tests; we are suppposed to get them directly from the lab but that hardly ever happens.

Jim really wants prednisone for the arthritis in his knees. GP said no; nothing oral and suggested something topical that it looks like I can only get on-line. So a little Hocks shopping tonight. He will re-ask the GI DR when he sees him in 2 weeks.

SSDI application. We didn't have to wait too long after my appointed time. I was so nervous; I went through 1.5 bottles of water. The intake woman said it was the most complete and organized application that she had seen.

It's a little complicated being self-employed (and not keeping real good time sheets after starting the surgeries), getting her to agree to my statement about the last day I did any "substantial work." But she finally did, and hopefully the state determining agency will also. I have to do no substantial work until September this year to qualify for any retroactive benefits. But then, I probably won't know until after that whether I got approved on the 1st application.

Because I had documented pretty well, it only took about an hour. Gave us time for lunch before my intake for neuropathy therapy.

PT found that I have sensation in my arms, hands, fingers, legs, feet, and toes. The test? Touching me with a hard plastic "pricker." We then did some balance testing. She said I was having balance problems. No shit, Sherlock. I had shown her my arm bruise from falling last week.

She also counseling me on the normal things I get nagged about--taking my pills, eating, lowered alcohol consumption. She said all of those things can affect the neuropathy.

So we are going to try the Anodyne treatment for six sessions (3x/week) and give me hand, feet, and balance exercises. Also some leg strengthening exercises. I start that Friday.

Tomorrow is my every 4 month PAP smear. Joy! But the last once was negative for abnormal cells, so if this one is too, I only have one more 4 month PAP before I can go back to annual.

Friday is my GP. She is seeing me every 4-6 weeks now because of my depression. I have quite the list of things to talk about. The SSDI application, where I listed her as the lead doctor in knowing my symptoms and treatments. Wanting a referral to a neurologist, although I am starting to waiver on this because the PT today said a neurologist would not do much more in the way of testing than she did today and would have nothing in her/his medicine bag that I'm not already on. Wanting a referral to a psychiatrist. My psychotherapist is OK, but it would be nice to have an MD doing the counseling because the s/he also could manage my stress/anxiety/anti-depression meds. My GP seems slightly an amateur in that area.

Then Monday, the psychotherapy resident.

I so want all these appointments to stop. I want to go out and garden.

Today Sucked

2007-05-08T20:20:00.000-04:00

I got up extra early because I had the appt for a CT scan and the thoracic surgeon. They called about 15 minutes before I left (it's a long drive) to tell me it was off because the DR had been called to emergency surgery. So I had to morning to continue working on other stuff, like my SSDI application. I had shot Ennis early and low at +10 because I thought I was going to be out past +12.

Around noon, I realized that I was just flat-ass worn out. I had a 3pm new PT appt somewhere far away that I had no idea where it was. Sure, yes, I google mapped it. I called them to cancel. The lady said she understood; that often happens with their clients. This place specializes in PT for women with breast and GYN cancers.

Tomorrow. Jim's family DR in the AM, SSDI application right after lunch, and now my intake with the new PT late in the afternoon.

Just thinking about this wears me out.

PS. Blogger has "switched" everyone over to the new version. It presents the opportunity to label posts with topics. This is the first one I am going to try this on. I have no clue what this is going to do or how it is going to work. Bear with me.

Really Tired

2007-05-07T22:19:00.000-04:00

Didn't do much today, except Jim and I went out for lunch, but Viv came over to help look at my online SSDI application. She used to do SSDI intake. Thank you Viv. She spent over an hour here, and gave me alot of encouragement and insight.

Just so tired. And so hand shakey in the mornings and difficult to walk in the overnight.

I get a lung CT scan and check by the thoracic surgeon tomorrow morning. I start with the new PT tomorrow afternoon, for work on my neuropathy.

So shoot me! I haven't taken my meds tonight because my 7-day med box is empty. Please let me do it tomorrow before I leave, at least my antidepressant and the Tamoxifin.

OK, so maybe I need to get a couple more 7-day med boxes and set up my pills for 2 weeks at a time.