Bye bye hope for a simple fix.Saw the endochronologist today. Subject to more blood tests, a 24-hour urine collection and testing, and a CT scan, he believe I have primary hyperparathroidism. The solution is to remove the tumorous gland. (The tumor is "always" benign.)
$3,191--the cost of my chemo-induced dental work so far. Plus $14 for each tube of prescription toothpaste. The insurance company got a long appeal letter this week.
I re-start the Tamoxifen today, after about 2 months off. This is the estrogen suppressing medicine I was on to reduce my risk of recurrence. Now I return to severe hot flashes, insomnia, and foggy brain. Another 4 years, but I may take breaks again in the future.The CT scan of my lung shows no cancer. "Crappy lungs," says my onc; lots of necrotic tissue from years of smoking. Also, a small area of scarring on the top of my right lung from radiation burn.
I still feel like shit, but that's for the endochronologist to try to resolve. I am starting to think maybe the psychiatrist went too low on the antidepressants, because my symptoms (fatigue and muscle aches and pains) can be symptoms of depression. I see the psych next week.
Medical insurance denied my claim for dental adjunctive care. I am appealing. My onc dictated a "to whom it may concern" letter yesterday. The more I read about dental disease as a result of chemo, the more I wish I had been better warned in advance and taken more steps to present it. There I go, doing the "if wishes were horses" thing again.
Ennis had a dental cleaning on Monday. He was so funny when he came home. Starving, but unable to stand to eat. I should have taken a video of him.
I am reading a book about recovering from loss. The Grief Recovery Handbook: The Action Program for Moving Beyond Death, Divorce, and Other Losses by John James and Russell Friedman.
Today, I start "working" the handbook with a friend of mine who lost both her parents recently. My issue is the loss of my health.
I've read through the first few chapters, which focus on the inappropriate behaviors we have learned from childhood to deal with grief. The six pieces of misinformation the authors offer that they were taught to deal with loss are:
1. Don't feel bad.
2. Replace the loss.
3. Grieve alone.
4. Just give it time.
5. Be strong for others.
6. Keep busy.
Obviously, the authors believe those "bits of wisdom" are bullshit and should be replaced with other behaviors to appropriately grieve and move past loss in a healthy way.
I'm on the chapter that talks about how others are ill prepared to help us deal with loss. They don't know what to say; they are afraid of our feelings; they try to change the subject; they intellectualize ("he's in a better place," "she led a full life"); they don't hear us (they react to the situation, not the emotion); they don't want to talk about death.........
I'll let you know how our effort goes.
Blood 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. 
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!!
October is breast cancer awareness month. Yes, breast cancer holds a special place in my body (not my heart), but I want to honor all people with cancer this month.
I asked people on the FDMB to help honor family members, friends, themselves, public
figures: people living with a cancer diagnosis, people caring for people with a cancer diagnosis, people who have passed to spirit from cancer.
Here are our messages. Messages of love, of hope, of loss, of survival.
My Father, Vernon
My Father, Vernon, known to his friends as Woody, was born in 1927 and died in 1981. 54 years old.
When I was a young child, he was a vibrant, fun-loving, and intelligent man and a doting father. Life pressures and alcohol destroyed his spirit early in life and eventually estranged him from most of his family. He died of lung cancer, mestaticized to his brain, with only his 2nd wife and his older daughter to call his friends.
He is my hero because, although I had only about 5 nurturing years with him, he gave me the gifts of loving life and learning.
I have a picture but no scanner. He was handsome as a younger man, very dapper.
Linda and Chance's Parents Gerald and Hazel
My Mom passed in Sept. 1998 from lung cancer and my Dad passed in May 2003 from lung cancer. These were the hardest years of my life. They each faced death bravely. I think I've earned the right to preach a little; Please, if you smoke, please try to quit. Try again and again until it sticks. Don't do it for yourself, do it for those who love you so maybe they won't have to watch you die such a death. My parents are missed greatly.
Maximillians Person (Donna's) Family
My father, Garry, diagnosed with Renal Cell Carcinoma at age 29, passed away April 22, 1977. He was a band director and touched the lives of many, many children besides his own with a love and appreciation of music. I still occasionally run into his former students who tell me what an amazing spirit he was in life.
My Uncle Glenn (my father's brother) is a multiple cancer survivor. He is currently battling thyroid cancer and winning.
My granddaddy Bowen (my father's father) has had many types of cancer and all have been new and exciting forms and not a result of earlier cancer. (In other words, he's been *cured* many times.) He's had Melanomas, Lymphoma (twice), Prostate cancer, Colon Cancer, and currently he is battling bladder cancer. He's my hero because he has never given up. He just keeps winning.
My cousin Bonnie (on my mother's side). Was diagnosed with Renal Cell carcinoma at age 29... She is winning her battle against this awful cancer. She's fighting to stay around for her two young girls.
My Aunt Jane (Glen's wife). She has had breast cancer twice and beat it both times. Both of her sisters and her mother have also battled and won their bouts with breast cancer.
Me. I guess I can't be my own hero, but I am the poster child for early detection and regular screenings. I had melanoma (very early stage). I was diagnosed when I was 29. I got clean borders when it was removed. (Those are the two sweetest words in the world *clear borders*!!)
Foxdancer (Rilla)
My colleague Jim just passed from pancreatic cancer a few weeks ago. He was the person who adopted Shahara, the little black rescue kitty I trapped in Seattle. She was his little princess- the best adoption I'd ever made. It was very sudden. He was only in his early sixties, and had just retired about 5 months ago. He was looking forward to traveling and spending time on his boat.
My housemate's father, Henry Powell, passed from pancreatic cancer last year. He and his wife were raising their three grandchildren (housemate's sis is a drug addict). He is sorely missed by his family.
Bev and Mitsy's Father
Was 63 yrs old. Had cancerous tumors on his sides, died 1990 memorial day weekend. Scanner not working so no picture. Handsome man, tall, lean, and raised us after my mother left us.
Sandy and Jake's Family
Currently my Sister is fighting the battle of her life (ovarian cancer). She is my HERO! The picture (she is in the middle with the cowboy hat) is from a benefit for CASA (she became a child advocate a few months ago despite her illness). My Aunt lost her life to breast cancer, my Uncle to liver cancer, my Mother in Law to renal cancer. My Mother is a ovarian cancer survivor and brother non-hodgkins lymphoma survivor. I also have 3 cousins that are cancer survivors, ovarian/bladder/testicular. These family members are all my heroes.
Renee's (renegade500) Dad
My dad was diagnosed with pancreatic cancer January 6 of this year. He died on February 3, aged 75.
In the last 10 years of his life, after he retired, my dad spent his time (and money) rescuing animals in South Florida. He started a nonprofit no-kill animal rescue organization based out of Ft. Lauderdale. They take in animals a lot of other rescue groups don't - usually very sick or injured animals. They rehabilitate them and foster them until they are adopted out.
I know the group has been struggling since my dad died (in part because my dad had so much time to devote to the organization due to being retired), but they continue to do the important work.
At his funeral, a lot of people from various South Florida rescue groups, plus several veterinarians, spoke about his work and how much he will be missed in the rescue community.
Unfortunately, I don't have any digital pictures of him.
Amy'sWinston's Dad and Too Many Others
My Dad, Harry. Was diagnosed with lung cancer when he was 48. He died 2 weeks later on May 26th, 1978, when I was 10. My family says I got more of him than any of the other kids...but I was too young to remember much. They tell me I'm the most like him. I remember him always bringing me balloons, for no reason. He taught me to fish with him when I was 3 and I was his fishing buddy from then on. I don't think any of the other kids would get up go out with him at 4am to fish. I always caught more than he did! He gave me a love for Southern food. He had a wicked sense of humor and could charm anyone he met. He was a big man with a big heart, and I miss him every day.
My cousin Charlie (on Dad's side) He'd been diagnosed with brain cancer in his mid 40's with no hope. He beat it and was clean the last 5 years of his life. It came back...with a vengeance, and he lost his fight last month, passing at the age of 53.
"Mama G." Eleanor Genovese. She was diagnosed with end stage breast cancer and passed this past February after a short, but valiant fight. No matter how bad she felt, she'd greet you with a smile and a dirty joke. She was a feisty, opinionated woman who loved fiercely. She was like a mother to me for many years. "adopted' was never a designation for her, she treated me like a real daughter...all the good and bad that came with it.
Estelle Novis. She battled breast cancer for over 20 years. She lost all her sisters and aunts to breast cancer, and fought even harder on their behalf. She was also an adopted mother to me all the years I was in CT. She started as co-worker, then became my friend, then became like a mother to me. She had me over for dinner every Friday night for Shabbat (sp?) and taught me all about their Jewish traditions. She lost her battle, and left us last year.
Milly Kansteiner. She was an elder care client of mine in Virginia. What trip Milly was! At 80+ she still died her hair flaming red like Lucille Ball, wore funky little socks and earrings, and painted each room of her house a different color from a crayon box. I was with her at a routine Dr.'s appointment when she was diagnosed with liver cancer, and I had to call her son in Alaska and let them know. Through all that followed the next few months, her sons became good, close friends of mine...and I'm grateful for their friendship.
Julie and Maddie Catie
Rachel, one of my dearest friends for over 20 years. 44. Died the day of Mom's funeral. Two dear women. Big holes they've left behind. 3 uncles, 2 aunts, family friends Howard, John, Leon, gone. Now Jerry, a neighbor home with hospice. I hate cancer. Thanks for giving me a place to say it.
And to the survivors! Venita, you and Carol, and Robin, and EVERYONE else out there on this board, my friend Delores in Indiana, my friends John and Ann in FL, you're all my heroes, too, and you're all going to beat it. I am CHEERING YOU ON EVERY DAY. Every day. I wish I could write it bigger. Much love.
Sally & Simon & Sasha's Aunts and 2 Cousins
All three of my Mom's sisters were/are breast cancer survivors. The oldest sister, Aunt Lorna, passed away in 1990 from causes unrelated to cancer. My Aunt Phyllis and Aunt Wilma are both breast cancer survivors and are still living and cancer free. They both live in Nebraska so I am able to spend some time with them.
Aunt Wilma's oldest daughter, Michael, lost her battle with breast cancer at age 55. This was her second bout with cancer.
My Aunt Phyllis's oldest daughter, Chris, passed away this August after a 20 month battle with liver and pancreatic cancer. She passed 4 days before her 58th birthday. She was just a year and a half older than me and I have many wonderful memories of our childhood together. She lived in Chicago. Chris is my special Hero. She fought very hard to beat this cancer. She went through a lot of chemo, radiation and kidney dialysis. All with a smile on her face and a goal to win! In the end, she lost her battle, but had such a wonderful support group of friends and family. From what my Aunt Phyl has told me, Hospice was such a wonderful group there and kept her free from pain. Her employer paid her full salary the whole time she was sick and was very supportive of her. I still grieve for my cousin, my friend.
My Dad had bladder cancer back in 1990, but he was also a cancer survivor. He was 5 years cancer free when he passed from congestive heart failure in 1995. He has always been my Hero for many reasons.
This picture is of my Aunt Phyllis, Aunt Wilma and my cousin, Chris. This was about 6 months after Chris's diagnosis.
Bless you, Venita, for doing this. You are also my Hero. I say a prayer for you everyday. May you continue to be a *survivor* forever!
Heather_Mr.Tubs's Gradma and Mom
My grandma Marian (mom's mom) had metastatic breast cancer. She had a double mastectomy. She died of lung cancer Dec. 6, 1989. My grandmother played an important and influential parental role in my childhood. We lived with my grandparents for a time after my parent's divorce. Growing up we played with her wigs and she was never ashamed of her scars. She showed us her bandages and staples after her mastectomy. She was a fighter. That loss was one of *the* defining moments in my life. I was 12 and it felt like I lost a parent. In my short time with her, she was an example of strength and courage. I will never forget those important painful lessons and she will always be my hero.
My mom was diagnosed with Stage 2 Uterine Cancer Dec. 22, 2005. She had a hysterectomy in Jan. 2006. She's been cancer free for going on 2 years. I'm fortunate to be from a family of strong women. My mother has taught me strength, independence and perseverance.
Marialyce and Sparky's (feathersby's) Family and Friends
My grandmother, Alice, who died of a sarcoma when I was six.
My Dad, Bernie, diagnosed with colon cancer in 1968 and died from a recurrence in 2000. His younger brother, my Uncle Eddie died of colon cancer also.
My Aunt Dot survived breast cancer over 10 years before dying from it in 1971.
My only female cousin underwent double mastectomy in her 30's, have lost contact with her.
One of my nursing school classmates and a good friend died of Lung cancer last year.
My friend Sue, who underwent double mastectomy 2 weeks ago, currently healing and planning other therapies.
Carol-Charlie's Husband Tom (her Caregiver)
My wonderful Tom, who has never complained, has done everything from change bandages, to litter boxes. He learned to care for Charlie the day I was diagnosed back in January of 06... he's taken over the care of feeding and litterbox changing. He cleans house (hired a cleaning lady once a month too) does 90% of the cooking and baking...
He tells me I'm beautiful... when I'm sitting there bald, and fat and feeling sorry for him. When this man looked at me and said..."For better or for worse... In sickness and in health..." He meant every word... and absolutely no complaints.
He'll take me for rides.. (buys me an icecream cone and off we go...) It gets me out... without worry of germs... He takes me shopping, and lets me 'save him money, buying on sale'... He buys a new watch for me, and puts it in a McDonalds bag.... Good thing I didn't eat it..
He holds my hand when I'm scared, and we start planning our trips to meet you all next year when I'm better... (been two years of saying next year... but)
We're going to New England .. Catnip Cottage, Oregon... Chicago.. want to meet the Tennesee girls (and Smokey).. and on and on... we'll be retired and heck... we can drive... my feeling should come back in my feet... We love to drive and sing the oldies... you know real oldies... 50's, 60's, and 70's... Thanks for letting me talk about Tom...
Robin (from Carol-Charlie)
Let's not forget Robin. She fought breast cancer, then had a brain tumor removed and never really even slowed down in helping us on FDMB to help others. She was a voice of strength for me when I was diagnosed, and sanity, when I thought I'd gone brain dead.. (Chemo Brain)... heard it first from our Robin. She remains a great gift to this board.
Then of course there is you Venita... another hero of mine... sadly there are a few of us on FDMB that are fighting more than feline diabetes.
Lets all remember to pray for healing (please/thank you) for all of us who still battle this very scary disease.
Thank you all!!!! I know prayer works... I am still here.
Teresa and Olivia's Father
I can't read these without bawling my eyes out. My father, Jack Hale, passed away on January 12th, 2004, at the age of 68. He died from metastatic thyroid cancer, which he fought for 23 years. He had part of his jaw removed, his hip replaced, and many other surgeries, fighting every day he could to see his granddaughters for as long as possible. He is my hero, along with all of the cancer fighters on this board.
Karen and Splash's Dad
My dad....Jim...diagnosed this past June with esophageal cancer. He taught me to be a strong independent woman so whatever life handed me I would be able to deal with. He has tried to protect me so much as he has ventured through this new labyrinth of treatments and decisions, but I think he has finally realized that it is our turn to take care of him. He is only 68 years young.
On top of this, he is a 40 year bladder cancer survivor. In 1967 the only treatment option was surgery. Chemotherapy was still experimental where it was being used. But his early detection saved his life.....so he could be in mine. (Mom was pregnant with me when he was diagnosed back then)
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??
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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.
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.
I usually only talk about events here. Today I want to talk about my thoughts and feelings and fears.
I have a quote from Freya Stark in my sig line on the FDMB: There can be no happiness if the things if the things we believe in are different from the things we do. How interesting I chose that quote about a year ago.
I have discovered through my individual therapy that some of the things I believe in are different from the things I do, and that has led to anxiety and depression. I try to stay true to my core beliefs, but the cancer and its treatment has put me in a place contrary to some of them.
What might be the "offending" core beliefs? Hummm, two are work ethic and self-discipline. I simply cannot concentrate enough to complete the tasks I feel I need to (like finishing the book I was writing when I was diagnosed). I feel that not only have I let myself down, I have let others down. And now there's the disability payments. I need the money, but as Laura says: there's a true example of mixed feelings.
I don't know what the solution is, but at least I have now identified the problem. I also have found some coping tools, such as deep breathing and yoga and unconditional life acceptance (UOA).
What is UOA? It's a philosophy in some recovery programs that life isn't "out to get you." Life can bring crap, small crap, big crap, but that crap isn't directed at you. You just happen to be the one in the wrong spot when crap falls out of the sky.
By accepting that crap happens, and that it is not directed at me, I have been able to become a little calmer about the mess my life has become. I try to not take it personally, and just calmly take out the dust pan and broom when the crap falls.
Sometimes, my crap-coping mechanisms are maladaptive behaviors. For example, expressing frustration with anger. That gets me nowhere. I am working on identifying and trying to correct those maladaptive behaviors.
I've also been thinking and talking with my cancer groups about my cancer fears. I have almost got myself convinced that this cancer is going to metasticize, so I would just rather it happen sooner rather than later so that I can stop waiting for the ax to fall.
Part of that belief is coming from how I have been feeling lately. I am tired; flat-ass fatigued. I am having pain in my back and left hip, and have started feeling mittelschmerz (ovulation pain), which isn't right because with my age and the cancer treatments, I shouldn't be ovulating. But maybe with being off the Tamoxifin for a month, my ovaries are starting to "wake up." I also have a swollen lymph node in my neck.
I saw my oncologist on Friday for these physical concerns. He says he believes all my complaints are benign. He took a blood draw to test my menopausal state to see whether we could try an aromatase inhibitor instead of Tamoxifen. The onc thinks the lymph node is inflammatory, perhaps dental, so I will talk with the dentist about that. He gave me medication for dry mouth. Why didn't he do that before? That's been a problem for more than a year. But again, ULA. I'll just take the med and get my teeth fixed and not blame or get angry at anyone for not addressing this sooner. What would blame/anger get me but frustrated?
The onc will have the radiologist re-read my recent abdominal MRI for my ovarian/back/hip concerns. I also will have a nuclear bone scan on Monday.
If it is going to spread, breast cancer usually goes to the liver, lungs, bone, and brain. Women with breast cancer also have a higher risk of gynecological cancer. I worry about these things. I am not obsessed with them, but I am watchful. As I said, I feel it is inevitable for me, and I would like to catch it as early as possible because early means less dreadful treatment. I really don't want to have to go through debilitating treatment again. That I fear more than anything I think. The fatigue of treatment, just remembering that fatigue and pain, makes me teary.
So sorry not to update. We've been swamped with construction. I have taken lots of pictures, but not organized them. There is one of the videos I took below. That was one of our busier days.
The patio guys are finished with everything except a little wrap-up. The last couple of days made a real mess in the house with the stone cutting.
The windows guys have only one more day. They put in the new patio door last week. It is GORGEOUS.
On the inside, George and Henry have almost finished with the carpentry and painting in the bathroom, and the electrician and plumber will hopefully come back this week to put in fixtures and the floor guy will finish the carpeting.. George also has to finish the bookcase for the middle of the family room. The laundry room is finished.
Then George and Henry have to build the roof for the patio, and all is done.
More News
Last weekend, 4 ladies from the FDMB and I met up at Ladew Topiary Gardens for a day trip. We had a grand time. Here is a photo of our group.
From left:
Venita
Karen and Angus
TROUBLELAURAK
Stefani and Toonces
WCF and Meowzi
Yesterday, I got notice from Social Security that I qualify for disability. That takes a huge financial worry off my mind.
Stefani's foster kitty SweetPea, a diet-controlled diabetic, is with us again for a couple of weeks. She continue to retain her nickname Pit Bull Kitty. She has bitten me three times so far this visit. Twice when I shooed her away from the bedroom door she is clawing the paint off. Once when I tried to play with a catnip toy with her. Right now, she is roaming the house in Max's walking jacket. I hope to train her to a leash so we might have a controlled introduction to Ennis.
I have an appointment with a highly recommended reconstructive surgeon in Baltimore. Dr. Bernard Chang. I see him for a consult October 18. My chest is really uncomfortable from the scar tissue and implant. I hope to have him make me flat and clean up the scars.
I have been feeling very tired lately, and having pain in my back and hip. After the visit to Ladew, I was down for two days. My dentist also found a swollen lymph node in my neck (as well as 4 more teeth that need work). I see the oncologist for these concerns week after this.
Tha-tha-that's all folks.
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.
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.
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.
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.
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.
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.
