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.
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.
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.