Thursday, December 20, 2007
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!!
Friday, December 07, 2007
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.
Thursday, November 29, 2007
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.
Tuesday, November 20, 2007
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.)
Saturday, November 17, 2007
Friday, November 09, 2007
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).
Wednesday, October 31, 2007
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.
Tuesday, October 23, 2007
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.
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!!
Monday, October 08, 2007
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*!!)
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)
Thursday, October 04, 2007
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??
The first dot is us.
Wednesday, October 03, 2007
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.
Monday, October 01, 2007
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.
Sunday, September 30, 2007
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.
Sunday, September 23, 2007
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.
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.
Karen and Angus
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.
Saturday, September 08, 2007
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.
Wednesday, August 29, 2007
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.
Saturday, August 25, 2007
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.
Friday, August 24, 2007
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.
Thursday, August 23, 2007
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.
Saturday, August 11, 2007
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.
Sunday, July 29, 2007
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.
Wednesday, July 25, 2007
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.
Tuesday, July 17, 2007
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.
Thursday, July 05, 2007
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.
Saturday, June 23, 2007
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.)
Friday, June 22, 2007
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.
Wednesday, June 20, 2007
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.
Saturday, June 16, 2007
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.
Friday, June 08, 2007
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.
Tuesday, June 05, 2007
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!
Monday, May 28, 2007
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.
Wednesday, May 23, 2007
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.
Tuesday, May 22, 2007
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
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).
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.
Sunday, May 20, 2007
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.
Monday, May 14, 2007
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!!
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.