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.

Transfusion Day

Things are going well and Ed is eating better. That may have to do with the delicious pot roast Therese made us for dinner last night! While we were at the hospital, Therese sanitized our bathrooms, living room, and kitchen, washed our bedding, made us dinner, and even took our garbage! What a huge break for me! It was the first day I could relax, read, and watch TV. Son-in-law Matt made some bathroom toilet repairs and continued to finish the trim in our living room renovation. Emotionally this assistance really perked up our spirits.

Ed will soon back to blogging when he feels better. I know that many people are following his stem cell procedure, so I feel compelled to temporarily update the Blog. Our thoughts have been with the students and colleagues at Tamarac during their opening day at school.

On the way into the hospital Ed remarked how much better he felt today. He was given a dose of Tylenol and Benedryl to prevent any reactions from the blood transfusion that he will be getting. His blood count is still at 0.1, and his platelets are down to 27 - hence the transfusion. The part of the white blood cells that fight bacterial infections, the Absolute Neutrophil Count, is currently at 0.

"Another day in Paradise" is our new mantra. I sort of understand how Tom Hanks felt on his isolated island in the movie "Cast Away". When Ed looses his hair he may even look a little like "Wilson".

Wednesday Sept. 8th

Last night Ed felt his worst so far. Even though his immune system is trying to bounce back, he is currently feeling his worst. Yesterday Ed only had Ginger ale and 1/2 of a Tuna fish sandwich. After the visiting nurse came and administered his anti-biotic IV Ed was losing it at both ends. He looked like a deer in headlights. Usually he is very upbeat and cheerful, but Last night he described himself as "feeling ugly". This is the only time I have felt helpless, frustrated, and upset. I hate seeing him in this state. The nurses and Dr. assure us that he will start bouncing back in about 3 days. His platelets were at 48 today, so they will hold off to give him a transfusion tomorrow.

As Ed is going through his daily IV procedure, his daughter Therese is currently at our house vacuuming, washing floors, cooking a pot roast, and washing our bedding. Therese will then baby sit Ed while I make the bi-weekly, highlight of my week, dump/recycling run. The cleaner the house is - the less chance of infection for Ed.

Check out SilverFoxSalvage.com
Ed's stem cell doctor, Dr. Shapiro, owns a salvage company with his girlfriend that is incredible. I am very tempted to purchase the lawn statuary of "David" for my side lawn.

First Day of School!

This is the first time in 33 years Ed hasn't gone to Tamarac School on the day after Labor Day. Oddly enough we both woke up at 5:00 just like old times! We already got a text message from Mary Beth telling us what was on the menu for the complimentary breakfast and who was speaking at opening ceremonies. The second text I am not able to print!

Yesterday was the first time I have ever heard Ed complain. After the hospital treatment he felt really sick. He described it like having flu symptoms. After his 3 hour nap Ed was able to have my homemade chicken soup and some ginger ale. Finally last evening we took a 1/3 mile walk around the loop with the cat. This walk was a milestone for Ed. It is hard for him to participate in his required exercise and walking program when he feels so sick.

Today his white blood cell count was down to 0.1(normal rate 4.8 to 10.8)and platelets are 68(normal rate 130 to 400). This platelet drop will require a possible blood transfusion tomorrow. Today Ed will have 3 IV drips of mega-antibiotics a day. The visiting nurse from "Anthem Home Infusion" will stop by every evening to change and administer the night-time IV and take his vital signs. It looks like Ed will only have another 10 days of having his port for the IVs.

Tomorrow Ed's daughter Therese and I are going to start cleaning the garage. Ed is concerned. I would never throw away anything of Ed's that is valuable!

Labor Day

Today is truly a Labor Day for Ed. He is working hard absorbing his IV drips. Albany Med. is like a ghost town, and we had trouble entering the building to get to our Stem Cell Unit. One wonders about who is taking care of the patients here! Nothing more to report, except that Ed feels very weak, headachy, slightly nauseous, and spacey. Normal side effects from the lack of white blood cells, medications, and the sloughing off of dead cells from last week's chemo.

Mary Beth has graciously offered to text Ed tomorrow during all of the opening day ceremonies at Tamarac School so Ed won't feel left out. Our thoughts are with all our former colleagues on this always "joyful" occasion! Go Bengals.

Sunday Sept. 5th

Just a quick entry to update Ed's progress. Ed's white blood cells are now plummeting and he is now quarantined. This is calle Neutropenia and he is wide open to infections. We still have to travel daily to the hospital, but he has to remain isolated. Vital signs such as temperature, blood pressure, urine output, and blood counts are monitored daily. Starting Tuesday there will be a visiting nurse stopping by to check vital signs and administer a nightly dose of antibiotics.

Ed's white cell count is down to 5 thousand. Red blood cells are at 10.3/30 and his platelets have dropped from 196 to 156. This is all expected and normal. Since he is off the Decatron (steroid) his blood sugar levels have finally gone down. His only side effects right now are his extreme tiredness, funny taste in his mouth, and a slight headache. He is prone to diarrhea right now because the chemo has caused the stomach cells to shed. Special Imodium is on hand for this side effect. Next we are waiting for the hair cells to shed. Last night we purchased a special electric razor to eventually shave his head. Ed has to be extremely careful not to cause any bleeding or cuts where bacteria can enter. He has to avoid flossing and has to clean his teeth with special swabs and solutions.

Unfortunately the cats have not been cooperative to Ed's plight. For some reason they spent the morning winding around Ed's legs and trying to make him trip. They are fully taking advantage of his sedentary status, and find typical feline ways to annoy him. Read "The Black Cat" by Edgar Allen Poe and you will know what Ed is thinking.

Stem Cell Reinfusion

Yesterday Ed had 3.97 million of his stem cells re-infused into his system. Three bags of his cells arrived by courier from NYC at 11:30am. in a large Styrofoam cooler laden with dry ice. They were then warmed in a water bath and one by one the bags are infused through an IV saline solution. Ed said they looked packages of thin cut steaks encased in plastic. Wishful thinking. You can see his appetite is not affected!

Today we are back on the regular daily routine of checking Ed's weight, blood levels, and IV fluids that include (flushing cell)solutions, and medications, and changing his dressing. Ed has daily injections of Nuelasta that helps the white blood cells come back. Bone pain will be a major side effect of this medication. He is still taking the other meds. listed in the previous Blog. His white blood cells are decreasing and have gone from 5.5 to 4.7 in one day. His red blood cells and hemoglobin are 10.9 and 30.8.

Platelets are 235 which is normal. Kidney and liver function are great and electrolytes are good. All I know is that the nurses are pleased with the statistics and things are progressing normally. His only issue right now is regulating his blood sugar levels, and adjusting his medications.

Daily I haul my thank you notes back and forth with good intentions. I just have enough time after the hospital routine to get the daily chores completed and food prepared. It helps that I am able to leave Ed home alone for short periods of time if I have to pick up groceries or go to the dump. Cell phones are a wonderful thing.
We love hearing from everyone - and I read Ed the daily facebook messages and e-mails. Too many friends and family to mention here - but THANKS!!! We both have Blackberries now, and we can continually check our messages in the hospital. We also want to give a shout out to our friends at the "Endeavour Pub" in Chelmsford, England for following the Blog! We always receive special update/cards/gifts from Lyn and Steve, and have heard from Joyce and Alan. Our Liverpudlian friends Julie and Stewart also regularly keep in touch.

Our Labor Day weekend will include the daily trips to the hospital - but there is a brighter light at the end of the tunnel with the progressing treatment. Finally we will be able to visit our family and camp in Indian Lake, and Ed's brother & sister-in-law John and Jan have kindly invited us to join them at their time share in Massanutten VA in late October. Ed will get to visit his dream trip to Thomas Jefferson's Monticello if all goes as planned. Great friends Sue & Dan and Pat and Carolyn have offered us use of their lovely homes on the Cape. We are more than grateful for these handsome offers and gifts. It has provided Ed with goals to look forward to an active and healthy future!

Wednesday Sept. 1st - New Meds. Day

Thursday, September 2, 2010

The patient speaks:

Today is the big day. I get back the frozen stem cells that were removed a few weeks before. This is a process called reinfusion. Three bags (of the six that were originally harvested) are driven from the New York Blood Center in New York City by a courier. Once here at Albany Med, they are placed in a bath to partially defrost them, and then hung from a tree like any other IV and drip into my port. The process takes about four hours, and it goes smoothly.

All the forces for my recovery are now in place. But the most challenging part lies ahead. As I noted before, the chemo’s negative effects begin to be felt early next week. No doubt, it will be most difficult to maintain an upbeat, positive attitude when in the midst of those days.

That will be the time that I find out what I’m truly made of.




Wednesday, September 1, 2010

DAY 3 with the GREEN BAG

Ed speaks:

How to bathe?

Today I try something new. The bag will hang from a bungee cord strung from the shower curtain rod outside the shower. The tubing is just long enough to allow me to enter the back of the shower and cleanse myself.

This appears to be a much more workable solution to bathing. Another crisis solved!

A visit to the hospital this morning of only several hours, as I sit through an IV infusion of fluids. Feels almost like a vacation.





Day three of Immune System destruction is going well. Ed is still walking around with his hunter green LLBean sack (his new best friend) with two pumps hooked up to his meds. The Ambulatory Infusion Pump (AIP) pump dispenses IV saline solution fluids to hydrate and flush out his dead cells, keep his electrolytes in balance, and protect his kidneys and liver. The second "BAD" pump has the Benedryl, Adivan, and Decatron which prevents nausea. Ed has been doing well and his main symptoms include tiredness and having to use the rest room frequently.

Today a new regimen of drugs have been added that will help prevent infection due to the eventual lack of any white blood cells. These pills will include Acyclovir to prevent Herpes Zoster (shingles), Diflucan to prevent yeast infections, Prilosec for GI upsets, and the antibiotics PenVeek and Levaquin to prevent a myriad of infections. In my mind I can hear my friend Linda again reassuring me it's OK that he is on all these drugs, and his medication regiment will soon be pared down. Sister-in-law Pharmacist Katie will also be contacted to reassure me that the meds. are OK. Most of his problems have been due to drug interactions, which makes me skeptical. Today an issue includes a very high blood sugar level - and meds. have been adjusted. Also his aphresis cathater insertion site needs to be monitored for a possible cellulitis infection. He also has to frequently use a breathing apparatus called an Incentive Spirometer to maximize the oxygenation of his blood and prevent pnuemonia.

Tomorrow at 11:00 am. the start of the stem cell re infusion will start. His very own frozen, processed, stored stem cells will be shipped up from NYcity by courier in the morning. When they arrive they will be thawed in a warming bath and the reinfusion and hydration process will take about 3 hours.

Ed's attached pump makes a whirring noise every 7 seconds around the clock. Makes me think of the Edgar Allan Poe's "Tell Tale Heart."