Sunday, November 29, 2015

Queen of Neuropathy

OMG, I can't believe it has been so long since I posted here. There are so many things I could say about the struggles of breast cancer survivorship.

But what I came here to post is a letter a friend (I will call her Person A) asked me to write for her best friend (I will call her Person B) who is suffering neuropathy after her recent treatment for cancer of her appendix. Yes, people can get cancer in a vestigial organ that none of us need. That has got to be the worst place to be, especially when the treatment for that cancer, as it has for Person B, completely disrupts life by putting the person onto disability and causing lack of function and pain from the neuropathy.

This is what I wrote. Please feel free to share it with anyone you know suffering from chemo-induced neuropathy.

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Neuropathy Discussion for Person A's Friend, Person B

Hi Person B,

I am Venita, a nine-year survivor of invasive breast cancers diagnosed when I was 54 years old. Among my treatments were eleven surgeries including two mastectomies, seven dense doses of three different chemotherapy agents, and thirty radiation sessions.

Person A explained briefly to me your situation, your neuropathy symptoms, and your concern whether the neuropathy will abate and how to treat it so it is tolerable.

I have read and was told by my two oncologists that for most patients chemo-induced neuropathy does resolve. That is supported by the CancerCare brochure on neuropathy at http://media.cancercare.org/publications/original/10-ccc_neuropathy.pdf. My first oncologist told me it could take six to twelve months for the neuropathy to resolve. Person A told me you finished chemo a couple months ago. Therefore, I think it’s reasonable for you to regain normal function and sensation in your extremities. Please don’t give up that hope. I also think that certain actions you take to ease your symptoms can help to resolve or alleviate the neuropathy.

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I am the Queen of Neuropathy. I have talked about it with my cancer support group, demonstrating four shopping bags of meds/devices that I have tried for my symptoms.

History—I started experiencing chemo-induced neuropathy in my feet and hands after my second infusion of docetaxel. I had one more infusion after that, but when I showed up for my fourth and final infusion in tears and describing my symptoms, my oncologist agreed that I was finished with chemo.

Sadly for me, my chemo-induced neuropathy didn’t resolve and is progressive. This is how my chemo-induced neuropathy presents—

·       Diminished feeling and weakness in my fingers and hands.
·       Both diminished feeling and hypersensitivity in my toes and feet, and pain that grows during the day from a dull ache to shooting and throbbing electrical sensations.
·       Cramping in the arches of my feet and in my calves. This usually happens overnight, waking me from sleep.
·       Shooting electrical sensations in the tops of my toes and feet and in my calves, causing pain and often causing involuntarily jerking of my legs.
·       Lack of coordination in my hands and feet/legs, causing me to spill/drop things, an unsteady gait when walking, and a lack of balance when walking/standing. I did once fall, resulting in a trip to the ER and more than a dozen staples in my head. I have to be careful when standing from a sitting position, and I will seldom go onto a step-stool without someone to “spot” me.
·       A general grumpy/bitchy mood from chronic pain and frustration with my diminished physical abilities.

In my 9+ years of living with neuropathy, these are some of the things I have done to improve/tolerate the condition—

·       Physical therapy (twice) to improve balance and reduce cramping, working with a PT practice that specializes in chemo-induced neuropathy. My insurance covered the cost.
·       Yoga/meditation to try to find inner peace and improve mobility. My local cancer support center offers those programs free-of-charge.
·       Reading and trying to apply the guidance I found in a couple books written by John Senneff – Numb Toes and Aching Soles and Numb Toes and Other Woes. I bought them from Amazon after reviewing copies from my local library.
·       Acupuncture. When I first started all of this, I had no flexibility in my feet. I was walking flat footed with toe drop. The acupuncture broke the bond my toes had with the ball of each foot (this may or may not make sense to you, depending on your symptoms). I returned to acupuncture a couple years later for the pain, but that didn’t work. Acupuncture is not covered by insurance, so it is a “luxury.” I asked and my practitioner gave me a disability discount.
·       Various physical devices to keep my toes separated/flexible and reduce pain/cramping. Flexible toes are what keep your balance when you stand or walk. When I am experiencing evening pain, I will use one of these devices for thirty to sixty minutes and get a couple hours of pain relief—
o      Yoga Toes, my favorite (http://www.yogapro.com/products/YogaToes.html). They can be difficult to put on, but they are made of a rubber product and I coat them with Vaseline to slip the separators between my toes. You can use them in a hot tub or foot bath.
o      Very soft cotton sock-type things that do the same thing as Yoga Toes to separate the toes. These aren’t the toe socks that fit around your toes like gloves fit around fingers. They have a separator between toes and leave your toes naked. I often wear these to bed.
o      An electric red-light heat vibrating device. It is difficult to use, though, because I have to hold it against the bottom of my feet. It doesn’t fit flat on the floor although there are some that do.
o      Vibram five finger shoes, although I seldom wear them because they are difficult and sometimes painful to put on and take off. http://barefootrunningshoes.org/vibram-fivefingers/. They are pricey. If you want to try them, I suggest you get a slightly larger size so you can get them on/off easier.
o      I have had people recommend a TENS unit. A friend sent one to me but I haven’t hooked it up yet.
·       Topical relief for toes/feet—
o      Microfiber-bottomed slippers. http://www.amazon.com/Slipper-Genie-Microfiber-Cleaning-Slippers/dp/B000R9B3L4. I wear these constantly in the house. They cushion the bottom of the feet. Don’t buy a “generic” brand; they suck.
o      Warm- or ice-water foot baths. Whether you go warm or cold depends on your sensation at the time. I have a vibrating/recirculating foot bath machine, but I do just as well with a dish pail with the water to the temperature I want. When I go warm-water dish pail, I will use Epsom salts. The salts can bring quite a bit of relief from pain.
o      BenGay-type products to rub onto the feet. I have tried various products and I like BioFreeze the best. In a pinch I will use Vicks Vaporub.
o      I had a friend with diabetic neuropathy recommend Magnesium oil and Methylcobaline B12, but I haven’t tried them yet.
o      Sometimes you just want to keep your feet warm or cold. I have a wheat pad, buckwheat slippers, insulated slippers, and electric heating pads. Sometime I find that if I am cold, wearing a stocking cap will warm up my whole body, including my feet.
·       Positioning your feet. I sometimes need my feet up and I sometimes need them down. If I have been vertical for most of the day, I need to sit in a recliner and have my feet up. But after a few hours in the recliner, I feel like I need better circulation in my feet so I have to put the footrest of the recliner down or get up and walk around a bit.
·       Exercise. I know it can hurt to walk or stand, but those are helpful to sensation. MODERATION IS THE KEY. I am fearful of a treadmill because of the fall risk. I did take a couple years of water exercise at my local YMCA. I took the class for people with MS because we had similar disabilities. Got good exercise; built strength and flexibility. The Y gave me a disability discount.
·       Travel. Person A told me you can’t drive, but she didn’t explain why. I can no longer drive more than three hours at a time. Otherwise I am in bed for the next day or two because of the foot pain. I have come to know my limitations, respect them, and ask others to respect them. I took a flight to/from Arkansas a few months back. I requested wheelchair assistance to my gates. That helped a lot, but after twelve to fourteen hours of door-to-door travel, I still ended up in bed for a few days. Know and respect your limitations.
·       Medications. Person A tells me you don’t want to be addicted to pain meds. I understand that. I worked with a physiatrist (a pain management specialist) at my cancer center. There are various meds, as discussed in the CancerCare brochure, which might relieve neurologic symptoms. My doctor and I tried antidepressants and anticonvulsants. They did not significantly reduce my pain or other symptoms; she said my nerves were “shot.” The physiatrist and I finally found that Oxycodone (an opiate) reduced my pain, and she sent me back to my general practitioner for pain management. Sadly, my GP got freaked out by the state and federal investigations into the over-prescribing of opiates and refused to continue to prescribe for me. So for 3+ years I have gone without pain management. I did not become addicted to pain management meds. I am still working on using the last of the 50 Oxys that were prescribed for me in 2011. My oncologist prescribed Methadone for me in 2013 as a pain management alternative, but when I read how addictive that could be, I tossed those pills.
·       Tools and attention to movements. I keep tools nearby so that I can manipulate things with my hands. For example, I keep a pair of pliers in a kitchen drawer so that I can take the screw-off lid off a liter of soda. I always look where I am reaching. I can no longer “know” that a glass of liquid is fourteen inches away at my 4 o’clock and reach back for it. I have to look where my hand is going to pick it up without spilling it. I have to be attentive to how I walk to keep from stumbling and to keep my balance, especially on stairs.

I could suggest other things, but what I have written likely will overwhelm you. So I will go back to the beginning of this tome. There is a very good chance that your neuropathy will resolve in six to twelve months after chemo, so please hold onto that hope.

~Venita

Tuesday, May 03, 2011

Path Report

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.)


Wednesday, April 27, 2011

Undeniable Pain

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.

Friday, April 15, 2011

Please Support the Pink Ribbon Program in Wilmington, Delaware

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.

Monday, January 18, 2010

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

...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.)

Friday, November 13, 2009

Les's Obituary


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.

Tuesday, November 10, 2009

My Memorial to Les

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.

Monday, November 09, 2009

Les is Gone


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

Tuesday, October 20, 2009

Les Update 10/18/2009

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.

Saturday, June 20, 2009

Holding Steady

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.

Wednesday, June 17, 2009

The Hits....just keep on coming

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.

Friday, June 12, 2009

Les Update--Thursday

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.

Monday, June 08, 2009

My Heart is Broken

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.......

Saturday, June 06, 2009

I am not at Room Temperature

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!!

Sunday, May 31, 2009

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


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.