Bad to the Bone!

Here's a picture of Edward looking like a Badass Biker Dude. A skull and crossbones tattoo would definitely add to his new look. The nurses said it would take about 3 months for his hair to grow back properly, but I secretly think he likes sporting this new look.

Anybody need an IV pole - Free?? The medical profession needs to "Go Green." Ed only used an IV pole 5 times at home when the visiting nurse administered his IV antibiotics. Nurse Donna from the stem cell program recommended we use the shiny silver pole for a bird feeder holder, or a pole for climbing vines. Additionally, we had to collect Ed's medical waste consisting of discarded IV bags, tubes, and bandages, and bring them back to Albany medical center for proper disposal. I do really feel qualified to become a nurse now. Our normal dinner table conversation now turns to medical jargon and blood levels.

Nurse Cratchett also had to make another important appearance. I spent 2 hours on the phone arguing and ranting to CDPHP, New York Oncology and Hematology, and Capital Imaging about Ed's medical bills. One recent $2,800.00 MRI bill was denied because CDPHP claimed that the MRI was needed because of a car accident that occurred in 2007. They said the bill needed to go to "No Fault" claim. Even though the MRI was ordered years later by on Oncologist for Ed's Multiple Myeloma diagnosis! After arguing for hours with every agency involved, I had to request a letter faxed from Amica Insurance to CDPHP saying that Ed's car accident case was closed.(A car rear ended Ed in 2007 and he only needed one MRI) CDPHP said that the only way that this situation could be rectified was by acquiring this letter. All the parties I "talked" to stated they thought it was also ridiculous! These organizations now know me by my first name.

Ed's $89,000.00 Stem Cell transplant was also denied (even though it was originally approved) because CDPHP had totally wrong information. Years ago Tamarac School made married couples get on a family plan so they could save $400.00 dollars a year. This only lasted a few years, and Ed and I are now on individual insurance plans. Of course CDPHP still has Ed listed under my plan, and of course they denied it. After numerous phone calls it seems to be rectified. They may know me by name, but I think they have their own "words of endearment" for me when I call!

Ed is feeling better every day, and his major issues continue to be his sore feet from the neuropathy, occasional insomnia, and feeling tired. We have had some wonderful tips from Linda M. and Joanne C. to help with the sore feet, and we are going to meet with Dr, Shapiro next week to check on these effective treatments. I am pleased that the Dr. now has Ed on a vast array of natural supplements to help with the neuropathy. They want Ed on as few medications as possible to keep his kidneys functioning well. Ed is very prone to Shingles after the transplant, so he is on "Acyclovir" twice a day for an entire year. He has to avoid the grandchildren for two weeks after they receive an inoculation that contains a live virus. He will have to have a full array of all his childhood inoculations in 12 months, 14 months, and 24 months.

We are finally heading to Indian Lake for a mini-family reunion to celebrate my brother Scott's birthday. We were going to take the Harley, but the weather isn't cooperating.

Monday, September 27, 2010

Dear Diary,

My days are beginning to settle into a smoother, more hum-drum regularity. To the reader, that probably sounds a bit regretful, but in my case it is a welcome respite. Our morning visits to the hospital, once scheduled for each day, are now less frequent. Stomach upsets and digestion issues have become less common. I am now merely dog-tired, rather than thoroughly incapacitated.

Improvement cannot be measured in days, for my condition each morning seems the same as it did the night before. But when viewed across the weeks, healing has definitely commenced. It can't come too soon.

Not all goes as wished. For starters, there is tremendous pain in my feet, like each of them had been slashed multiple times by a razor. This has definitely limited my ability to walk for exercise or do light chores. It even hurts me at night and keeps me awake. Tylenol doesn't touch the discomfort. Nurses tell me that this pain is the result of "neuropathy", nerve damage caused by this affliction and treatment. I'm sure my high sugar numbers a few weeks ago haven't helped. I have been placed on high doses of vitamins and supplements to combat this problem, including B6, B12, folic acid, vitamin E, and acetyl L-carnitine. So far, no improvement, but this approach must be given time.

Another drawback is the decline in my eyesight. Both close viewing and distance have been affected. This has made reading and TV viewing a challenge, and I am doing less of both because of it. As with my feet, the nurses tell me that this, too, is the result of my situation. I'm told that my vision will improve with time. I should not see an eye doctor for corrective lenses for at least six months. Oh, well.

Friends and family continue to be incredibly supportive. Get well cards arrive daily, and tasty donated meals and desserts have still come our way in recent weeks. Many thanks to my daughter, Therese, Sister Kate, to Matt and Jen, and to Scott, Marsha, Beth, Colleen, Paul, Bob, Regina, Ann, and Sandy. Indeed, it's almost as if these people conferred with one another so that their donations are spread out rather than arriving all at once. What's more, they have inspired Donna to crack the cookbooks, and create some tasty concoctions of her own.

All these folks and more have ensured that my myeloma has not become a weight-loss regimen.

Sunday, September 19, 2010

I knew this day would come.

I had been told over and over by the nurses that the Melphalan, the high-dose chemo, would definitely cause my hair to fall out. Yet what little hair Mother Nature had allowed me to keep continued to hang tough for two weeks. Even the nurses were a bit puzzled.

By this past Thursday, however, it suddenly became obvious that my greying mop would not be spared. Each combing brought forth a wad of my once firmly-planted locks. We decided to see how far this would go before chosing what course of action to take. Perhaps if the hair shedding was brief in duration, drastic action would not be necessary.

Unfortunately, Friday and Saturday proved to be just as follically destructive, if not worse. And so, Sunday morning, the decision was made to shave my head. The hair loss had been creating a terrible mess in bathrooms, and on towels and clothing. What's more, my entire mane seemed to go grey within the last few days. I sure got old fast.

We were visiting family at Indian Lake. A stool was carried to the back lawn there, and Donna began to use a pair of shears to cut what hair was left. Then my newly-purchased Norelco electric razor was put to work. First the spring-release trimmer was employed to pare the shortened hair down to the nub. Then the triple-head razor was applied to shave the hair to the skin. It didn't take long. It was over.

For most men, this step might usually be little cause for chagrin. The bald head becomes a banner of pride, proof of the heroic struggle against the big "C". It might even add a bit of sex appeal to some males. But for women, I think it must come at a terrible price. A woman's hair is her pride, which often may be lost along with her locks. It's even possible that the public may look upon her with a sense of pity or shock, the bald head or the head scarf broadcasting her affliction for all to see.

Maybe I'm wrong. I hope I am. Attitudes need to change. All cancer patients deserve the wonderful support I've enjoyed these past few months. The bare head should not be allowed to become a metaphorical Scarlet Letter.

Great News!!!! Tuesday September 14th

Just a quick update to say that things have really changed over the past 2 days - and it's all good! Ed was told yesterday that he didn't need to take home his IV medications in the 15lb. bag that he was hauling around. I can't tell you how much this picked up his spirits! The visiting nurse also doesn't need to stop by anymore.
His blood numbers and white cells have increased enough that he doesn't have to be totally isolated anymore. He still has to avoid crowds and sick people. (Something we like to avoid anyway!) Starting Wednesday he only has to go to the hospital to check his blood work. Thursday he gets his port removed! :)

He chemo damaged a lot of fast growing cells, which included the stomach and hair cells. Hence the nauseousness and occasional diarrhea. His hair was starting to slightly thin/fall out today, so we will see if he has to shave his head. He claims he is still dog tired and "spacey". He actually walked 2/3 of a mile yesterday and today - which is a big deal!

Bottom line is that Ed has done extremely well during this entire procedure. He progressed just as they predicted, but he didn't get many of the extreme side effects that sometimes accompany this treatment (sores in mouth, throwing up, hives from the platelet transplant). The doctor and nurses were impressed all along with his progress. Unequivocally his positive attitude and cheerfulness definitely added to his speedy recovery. I totally marvel at his spirit and cheerfulness, even when he hits rock bottom. His attitude has kept me totally grounded, and being his caregiver has been a pleasure. I only had 2 days where I felt very lonely and depressed because Ed was sleeping most of the time, and too weak to talk. Other than that we have enjoyed our long rides to the hospital, reading, and watching movies together. Considering how sick he has been - he is great company. He still misses teaching, but as he gets healthier , he will be able to enjoy more of his retirement.

Thanks to Colleen and Paul for their Dunkin' Donuts gift certificate. This will be well used for pumpkin lattes at the hospital! A shout out also to Barb B. for her extreme gift and ever ending support. Can't thank her enough. Additionally thanks to Beth C. for bringing over a yummy fantastic chicken potato casserole tonight for dinner. All the calls, cards, e-mails, and texts have been more than uplifting, and we could never thank people enough.

Well enough philosophical dribble - Ed will be back to Blog soon!

Monday, September 13th

This is getting old....

Sunday, September 12th

Today marks the one month anniverary of Ed's Port insertion. We are being told that it may be removed by this coming weekend. The attached picture is Ed's nurse Christine from the stem cell program. This is where Ed sits hooked up to IV's every single day for about 4 hours. Today Ed's white blood cells jumped from 0.2 to 0.8 since yesterday!! No transfusion toay. :)

While I was driving down the Northway on the way to the hospital this morning, I hear this low gutteral voice next to me annouce "Boy am I sick of this S*#%". I laughed so hard I almost drove off the road!

We want to thank Iain and Sheena, our friends from England, for their wonderful message. Brings back memories of last summer's party in their beautiful botanical garden. The support Ed is receiving from his family, friends, and mates from across the pond has been beneficial to his healing. I am totally convinced that Ed's positive attitude has helped him heal faster and stronger. During this procedure there have been some side effects that surprisingly haven't affected him. So far he has not lost his hair which was supposed to happen by now. The Good Lord may be sparing him becuase he didn't have that much to begin with!

Did I mention that Albany Med. also has a Starbucks?
Did I also mention that caregivers generally receive a "Pandora" bracelet for thier efforts?

Same place - same station!

Back at the hospital for our morning routine of more fluids and antibiotics. Yesterday's blood levels were the same as the day before - so they didn't give him a blood transfusion. Today his platelets were at 16 (thousand) so he will need another transfusion. White blood cell count has jumped from .1 to .2, so his immune system is bouncing back! Even though his red blood cells are low and he is anemic, they are just monitoring this. Ed's symptoms continue to be extreme tiredness and slight nausea. Ed's weight has dropped 12 lbs. since the beginning of the stem cell treatment. There is a woman from Northville in the room next to ours who is also going through the procedure at the same time. She is staying with her husband for the 5 weeks in the Hyatt Hotel (paid for by insurance) across from the hospital because she lives so far away. Her retired husband was Athletic Director at Wells, and worked with Glenn Goodale (a former Principal from Tamarac School). We are fortunate that we can live at home, and not have to have this treatment at Dana Farber Hospital in Boston.

Thursday Ed's sister Katie stopped by with a load of groceries, and Friday his daughter Therese dropped of a few more necessary items - such as cat food. (I don't know why I bother feeding them. Thursday involved a chipmunk slaughter, and I spent the afternoon disposing of the dead specimens throughout the yard). Ed perked up with Therese's special chocolate sugar free pudding which made his day! Today's menu includes beef stew and sugar free lime jello. The cats will be having chipmunks.