Monday afternoon, August 30, 2010
How many people can claim that an L.L. Bean’s shoulder bag saved their life?
I can.
To wit:
My dual bags of saline solution and high-dose chemo drips nearly finished, our star nurse Christine strides into the exam room with an armload of equipment. I knew I was in for it. We had been forewarned.
For the next few weeks, she announced, I would be tethered to bags of saline solution 24 hours a day. What’s more, the same would be true for anti-nausea medication as well. This nausea compound would be doled out by a battery-operated electronic device about the size of a large paperback book, with both meds fed through five feet of plastic tubing that would enter my chest through my already-mounted catheter or port.
This machine, which makes a sound every half-dozen seconds or so akin to that of a digital camera when snapped, permits me to supplement my automatic doses of anti-nausea medication with the touch of a button, at the same time carefully ensuring that I do not over-medicate. It’s powered by a nine-volt battery. At the first sign of an upset stomach, I can push-button my way to relief.
And what binds this rig together? Christine has fitted it all into a green canvas, dual compartment L.L. Bean valise, with handle and shoulder strap.
I’m not sure this is what old L.L. had in mind when he first opened shop in 1912.
Monday, August 30, 2010
D-Day - Immune System Wipeout
Ed started his mega-chemo treatment today. The morning started at Albany Medical Center with blood work drawn to check Ed's platelets and cell counts, and a dressing change at his port site. Ed's chemo called Melphalan is used for Multiple Myeloma patients to inhibit growth of cancer cells. Today Ed's treatment included the Chemo, IV fluids, and Aloxi(an anti-nausea drug). Ed will be going home hooked up to a pump called a BAD pump which stands for Benedryl, Ativan, and Decadron. This medication will be used to prevent nausea, and Ed can self regulate the amount of medication he needs. This same chemo treatment will also be repeated on Tuesday.
For the next three weeks we will be traveling to Albany Med. to check Ed's daily blood work, and he will have various IV fluids administered which will include antibiotics. Daily they will be checking his white and red blood cell counts, and platelets to see what fluids and treatment he will need. If his platelets go too low, he will be administered "Leuko reduced irradiated single donor platelets" from a blood donor. Ed had to sign a release form that stated he was aware of the complications from the meds and blood donations. Always comforting!!
Next week will be the start of his white blood cell count going to zero. We were told that he will have a 99% chance of loosing his hair in two weeks. I will avoid making any hair jokes at this time to respect Ed's plight.(But you know what I am thinking and there will be pictures posted!) Next week Ed will be on a strict diet to prevent any infections. It's a large list of foods, and even bananas aren't safe. Lots of soups and stews. I continue cleaning and sanitizing the house and bedding daily to prevent any complications. The cats, however, are not cooperating.
Lastly, we would like to thank the family members who have continually helped us. We couldn't do it without them, and words cannot express our gratitude. Many friends have also offered, but we have planned ahead and been very organized by stocking up on many supplies. We thank you for your continued offers and prayers!
For the next three weeks we will be traveling to Albany Med. to check Ed's daily blood work, and he will have various IV fluids administered which will include antibiotics. Daily they will be checking his white and red blood cell counts, and platelets to see what fluids and treatment he will need. If his platelets go too low, he will be administered "Leuko reduced irradiated single donor platelets" from a blood donor. Ed had to sign a release form that stated he was aware of the complications from the meds and blood donations. Always comforting!!
Next week will be the start of his white blood cell count going to zero. We were told that he will have a 99% chance of loosing his hair in two weeks. I will avoid making any hair jokes at this time to respect Ed's plight.(But you know what I am thinking and there will be pictures posted!) Next week Ed will be on a strict diet to prevent any infections. It's a large list of foods, and even bananas aren't safe. Lots of soups and stews. I continue cleaning and sanitizing the house and bedding daily to prevent any complications. The cats, however, are not cooperating.
Lastly, we would like to thank the family members who have continually helped us. We couldn't do it without them, and words cannot express our gratitude. Many friends have also offered, but we have planned ahead and been very organized by stocking up on many supplies. We thank you for your continued offers and prayers!
Thursday August 26
Today was the first sunny day on the Cape after 4 days of straight rain from a Nor'eastern. After 4 days of being cooped up with family Monopoly and Uno marathons, it was time to get out in the fresh seaside air. Ed's leg was less painful today, and he wanted to visit Race Point and Provincetown. A few days ago the beaches between these two areas were closed due to a Great White Shark sighting near shore. When the tide is high the seals come closer to shore, the hungry sharks follow them.
The highlight of the week was watching grandson Sean take a ride on a Pirate Ship called "The Sea Gypsy" to hunt buried treasure in Hyannisport. Sean's pirate name was "Sea Boots", and the Pirate Ship was attacked by a mean pirate called "Slash". The kids on the pirate ship attacked Slash with water guns and eventually found the buried treasure. Ed really got a kick out of seeing Sean's reaction to this experience.
Another exciting part of our week were the daily updates from Ann and Sandy in Easton about the escaped migrant worker that attacked a state trooper. The entire search focused for the majority of the week directly around their house! 50 plus troopers, search dogs, night vision helicopters, and Homeland Security planes day and night. Ironically days later, the criminal showed up on our friend Pat's front lawn in Brunswick while he was cutting his grass, looking for directions to a local farm. Former policeman Pat quickly reported the incident to the state troopers, and the criminal was eventually found and arrested in a barn hayloft near Tamarac School. Even more ironic was running into a woman having chemo next to Ed, that said she lived near the location of the original crime, and her son was the one that found the injured State Trooper.
This well needed vacation gave Ed an extra emotional boost before the tough part of the stem cell procedure. After a week of Lobster, clam chowda, ice cream, family outings, and lots of tylenol, it was time to leave and prepare for the upcoming week.
Tuesday, August 24, 2010
Monday, August 23, 2010
Monday, August 23, 2010
Our accommodations at a guest house in Harwichport on Cape Cod are wonderful, almost a throw-back to the 1920’s. My morning shower is still a bit of a challenge, but it works. We hang out with Sean, Jack, Jen, Matt, Eileen, and Pat at Ocean’s Edge Resort in Brewster and wait out the weather, which is extremely blustery. My gout continues to be a problem; each day’s improvement seems to be very small, although I am able to wear sneakers by this time. I must grin and bear it, and wait out this painful illness.
Saturday, August 21, 2010
Our treatment centers at New York Oncology and Hematology (NYOH) and at Albany Medical Center all believe in helping the caregivers and well as the patients, and seek to keep morale high. To that end, they scheduled my treatment around our one-week vacation on Cape Cod.
And so, a dressing inspection and change was arranged for yesterday (Friday, 8/20) afternoon, at Albany Med, in preparation for our departure from home early this morning. I was admonished to keep this dressing dry at all times, as it protects the port or catheter that taps into veins in my upper chest. It is very difficult to shower and do this, and so hygiene necessarily suffers somewhat. Our wonderful nurse, Donna O., has some pointers that are a great help. I use sheets of “Glad Press and Seal,” which I cut and press to the affected area of my chest. Then I secure and seal the edges with one-inch-wide medical tape. Even then, a full shower is not possible. Shampoo and upper body cleansing I do after the shower, in the sink. It is enormously time-consuming, but one must balance the inconvenience with all the effort and expense being made to heal and prolong life. It seems to me a mighty small expense to pay.
Traffic over the Bourne and Sagamore Bridges and onto the Cape can be horrendous, and so we depart from home very early, at 5:30 AM, in order to beat this tie-up. Our effort is a success, and we meet our good friends Marcia and Paul for our traditional breakfast at 10:30 AM at Grumpy’s Restaurant along Rte. 6A in north Dennis. It’s a terrific feed! Our vacation has begun!
All these positive vibes are tempered by my painful leg. The gout in my ankle and foot is slightly improved, but still extremely painful, and I am relegated to wearing bedroom slippers wherever I go. Sometimes I’m even forced to use a cane. The Indocine and Oxycodone prescribed by my primary care physician for this wonderful affliction, which normally cure gout within 24 hours, are very slow to work this time. Why? At this stage in my myeloma treatment, my body’s natural defenses are at what may well be a lifetime peak. Is there something else about myeloma that retards healing in spite of this? I can only hope for a speedy recovery so that I can enjoy my vacation.
Our accommodations at a guest house in Harwichport on Cape Cod are wonderful, almost a throw-back to the 1920’s. My morning shower is still a bit of a challenge, but it works. We hang out with Sean, Jack, Jen, Matt, Eileen, and Pat at Ocean’s Edge Resort in Brewster and wait out the weather, which is extremely blustery. My gout continues to be a problem; each day’s improvement seems to be very small, although I am able to wear sneakers by this time. I must grin and bear it, and wait out this painful illness.
Saturday, August 21, 2010
Our treatment centers at New York Oncology and Hematology (NYOH) and at Albany Medical Center all believe in helping the caregivers and well as the patients, and seek to keep morale high. To that end, they scheduled my treatment around our one-week vacation on Cape Cod.
And so, a dressing inspection and change was arranged for yesterday (Friday, 8/20) afternoon, at Albany Med, in preparation for our departure from home early this morning. I was admonished to keep this dressing dry at all times, as it protects the port or catheter that taps into veins in my upper chest. It is very difficult to shower and do this, and so hygiene necessarily suffers somewhat. Our wonderful nurse, Donna O., has some pointers that are a great help. I use sheets of “Glad Press and Seal,” which I cut and press to the affected area of my chest. Then I secure and seal the edges with one-inch-wide medical tape. Even then, a full shower is not possible. Shampoo and upper body cleansing I do after the shower, in the sink. It is enormously time-consuming, but one must balance the inconvenience with all the effort and expense being made to heal and prolong life. It seems to me a mighty small expense to pay.
Traffic over the Bourne and Sagamore Bridges and onto the Cape can be horrendous, and so we depart from home very early, at 5:30 AM, in order to beat this tie-up. Our effort is a success, and we meet our good friends Marcia and Paul for our traditional breakfast at 10:30 AM at Grumpy’s Restaurant along Rte. 6A in north Dennis. It’s a terrific feed! Our vacation has begun!
All these positive vibes are tempered by my painful leg. The gout in my ankle and foot is slightly improved, but still extremely painful, and I am relegated to wearing bedroom slippers wherever I go. Sometimes I’m even forced to use a cane. The Indocine and Oxycodone prescribed by my primary care physician for this wonderful affliction, which normally cure gout within 24 hours, are very slow to work this time. Why? At this stage in my myeloma treatment, my body’s natural defenses are at what may well be a lifetime peak. Is there something else about myeloma that retards healing in spite of this? I can only hope for a speedy recovery so that I can enjoy my vacation.
Wednesday, August 18, 2010
Wednesday, August 18, 2010
Good news. The pain in my ankle and foot is reduced. Dr. Ryan's prescriptions for Indocin and Oxycodone may be starting to work. The swelling seems the same, and I still use my cane, but moving around is now a bit easier. Donna and I are able to get a few simple chores done.
One disease at a time, please.
One disease at a time, please.
Tuesday evening, August 17, 2010
A miracle has occurred!
One of our favorite nurses, Donna O., calls from the Oncology center at Albany Med. She informs me that a total of over 8 million stem cells were harvested on Monday and Tuesday, and that no more will be needed. Apheresis is over. Only two days were required, rather than three or four. Donna and I can get a bit more sleep in the mornings now! No more injections, tubes, and machines, at least for a few weeks.
As always, though, there is a downside. We will miss our two oncology nurses, Donna and Christine, who became terrific friends. They were always smiling and funny, not to mention incredibly professional. In addition, we will also miss our new friend, Alexander Ryakov, from the New York Blood Center, who performed the actual procedure, and who, like Donna and Christine, also had a great sense of humor. Alex is from Russia and has established a wonderful career for himself in the USA.
One of our favorite nurses, Donna O., calls from the Oncology center at Albany Med. She informs me that a total of over 8 million stem cells were harvested on Monday and Tuesday, and that no more will be needed. Apheresis is over. Only two days were required, rather than three or four. Donna and I can get a bit more sleep in the mornings now! No more injections, tubes, and machines, at least for a few weeks.
As always, though, there is a downside. We will miss our two oncology nurses, Donna and Christine, who became terrific friends. They were always smiling and funny, not to mention incredibly professional. In addition, we will also miss our new friend, Alexander Ryakov, from the New York Blood Center, who performed the actual procedure, and who, like Donna and Christine, also had a great sense of humor. Alex is from Russia and has established a wonderful career for himself in the USA.
Tuesday, August 17, 2010
My second day of apheresis: the syphoning of stem cells from my body.
We are not off to a good start. My swollen left foot and ankle have not improved at all, despite the Colchicine and Oxycodone prescribed the day before, and concerns arise as to what might be causing the intense pain and swelling. The previous Thursday I had begun injecting myself with Neupogen, a treatment that is meant to generate stem cells in my bone marrow and force the overflow into my bloodstream. Is it possible that the Neupogen has caused a form of gout, with uric acid crystalizing in my foot and ankle? How could this happen when I am on Allopurinol, a medication designed to head off this problem?
Could the problem be a blood clot instead? Or cellulitis?
It is decided to proceed with the apheresis, and arrange an appointment for later in the day with my primary care physician. Perhaps an untrasound might be performed.
The morning session is a long one, and we finish at 12:30 PM. The courier dashes in with his cooler, ready to take possession of the bag and dash off to New York City to store my stem cells.
Donna and I stop for a quick lunch, and then jet over to Dr. Ryan's office. As my primary care physician, he concludes that it is indeed gout, and decides to prescribe his favorite medication for this horrendous affliction: Indocin. In addition, he will double my dose of the painkiller Oxycodone. Dr. Ryan has been successful with this approach before. Donna and I leave, confident that things can only get better. We wave a big goodbye to our good friend Jocelyn, who is Dr. Ryan's secretary, and also a former student of ours at Tamarac. It's always worth a visit to Dr. Ryan's office just to see her cheerful face!
We are not off to a good start. My swollen left foot and ankle have not improved at all, despite the Colchicine and Oxycodone prescribed the day before, and concerns arise as to what might be causing the intense pain and swelling. The previous Thursday I had begun injecting myself with Neupogen, a treatment that is meant to generate stem cells in my bone marrow and force the overflow into my bloodstream. Is it possible that the Neupogen has caused a form of gout, with uric acid crystalizing in my foot and ankle? How could this happen when I am on Allopurinol, a medication designed to head off this problem?
Could the problem be a blood clot instead? Or cellulitis?
It is decided to proceed with the apheresis, and arrange an appointment for later in the day with my primary care physician. Perhaps an untrasound might be performed.
The morning session is a long one, and we finish at 12:30 PM. The courier dashes in with his cooler, ready to take possession of the bag and dash off to New York City to store my stem cells.
Donna and I stop for a quick lunch, and then jet over to Dr. Ryan's office. As my primary care physician, he concludes that it is indeed gout, and decides to prescribe his favorite medication for this horrendous affliction: Indocin. In addition, he will double my dose of the painkiller Oxycodone. Dr. Ryan has been successful with this approach before. Donna and I leave, confident that things can only get better. We wave a big goodbye to our good friend Jocelyn, who is Dr. Ryan's secretary, and also a former student of ours at Tamarac. It's always worth a visit to Dr. Ryan's office just to see her cheerful face!
Tuesday, August 17, 2010
3 and 1/2 million stem cells harvested!
Monday, August 16 was very successful. They harvested three and a half million stem cells. They need to collect 8-10 million over the 3-4 days to send to New York City for storage. The courier comes at noon to pick them up and deliver them to the "Cellular Therapy Laboratory" in the Big Apple. All of Ed's blood levels were good today.Tuesday, though, was a rough start. Ed has a very swollen left foot and lower leg that is numb. We may have to go to his primary care physician, Dr. Ryan, and have the leg/foot checked out. They will be giving him a Dopplar ultrasound scan to check out whether he has a blood clot or cellulitis.
Monday, August 16, 2010
First day of Apheresis - Stem Cell Extraction
We arrived at Albany Medical Center and Ed was brought in by wheel chair to the New York Oncology Hematology Center to start his apheresis (Greek for separation). Dr. Shapiro quickly evaluated his swollen ankle and the diagnosis was gout. This painful form of arthritis is caused by high forms of uric acid that form crystals in the blood which causes the pain and inflammation. Two more medications to add to his huge list of drugs. (I am taking out more stock in Pfizer Pharmaceuticals)
Our new best friend Alex is the blood collection specialist who is from the White Plains area and travels a 100 mile radius depending upon which facility requires his attention. Alex is fantastic and explains the procedure every step of the way while he hooks up Ed and monitors his progress. Alex hooked Ed up to the apheresis centrifuge collection machine which separates the blood components (red and white blood cells, platelets, and plasma). The goal is to extract 10 to 20 million blood cells during each extraction. This process usually lasts 2 to 4 extraction treatments. The stem cells are processed and sent to New York City where they will be stored until Ed needs them. After they wipe out his white Blood cells and his immune system is down, they will reintroduce some of his own stem cells. He will have stem cells stored at the NYC facility indefinitely in case he needs more of them in the future. We are told that after the entire 5 week process is over - they have to re-inoculate Ed with all the childhood disease shots (MMR, Tetanus, Chicken Pox, Polio, etc.). Again we are hooked up to full technology with access to the Internet and Blackberry during our hospital visits. Ed will blog. later, when he has more energy. Right now things are going well, and his ankle is becoming less swollen. Ed will stay in the car while I run into the pharmacy and grocery store on the way home. No need to call Social Services - I promise to crack his windows down for some fresh air.
Our new best friend Alex is the blood collection specialist who is from the White Plains area and travels a 100 mile radius depending upon which facility requires his attention. Alex is fantastic and explains the procedure every step of the way while he hooks up Ed and monitors his progress. Alex hooked Ed up to the apheresis centrifuge collection machine which separates the blood components (red and white blood cells, platelets, and plasma). The goal is to extract 10 to 20 million blood cells during each extraction. This process usually lasts 2 to 4 extraction treatments. The stem cells are processed and sent to New York City where they will be stored until Ed needs them. After they wipe out his white Blood cells and his immune system is down, they will reintroduce some of his own stem cells. He will have stem cells stored at the NYC facility indefinitely in case he needs more of them in the future. We are told that after the entire 5 week process is over - they have to re-inoculate Ed with all the childhood disease shots (MMR, Tetanus, Chicken Pox, Polio, etc.). Again we are hooked up to full technology with access to the Internet and Blackberry during our hospital visits. Ed will blog. later, when he has more energy. Right now things are going well, and his ankle is becoming less swollen. Ed will stay in the car while I run into the pharmacy and grocery store on the way home. No need to call Social Services - I promise to crack his windows down for some fresh air.
Tough weekend
Over the weekend Ed had to inject himself with Neupogen every morning and evening. Saturday went well, and Ed was able to go to our niece Danielle's play and see her amazing performance as one of the leads in "Bye Bye Birdie". Saturday evening we had a wonderful gourmet meal at Regina and Bob's and things seemed to be going well. Unfortunately,overnight, Ed had a negative reaction to the medication and his left ankle swelled up. He remained bedridden all day Sunday and literally had to crawl to the bathroom. Help soon arrived when my niece Danielle and nephew Phil arrived to do yard work. Dinner was a wonderful chicken casserole donated by a summer school colleague Laura. Between yard work and waiting on Ed, we were able to watch 5 episodes of The Tudors, and finally witnessed Anne Boleyn getting the axe. This was the highlight of our day!
Thursday, August 12, 2010
11:42 Thursday Morning
They finally wheeled Ed up to surgery about 10:45. They were delayed due to complications from the previous surgery. Comforting!! My friend Linda called my blackberry to tell me where the Dunkin Dunuts was located in the hospital. She must have been reading my mind. They give you a pager to let you know when your loved one returns back to recovery. I am fully technically hooked up here with my laptop, blackberry, and cable TV.
They just brought Ed back at 11:45 and he is doing great! When he got up to surgery the nurse told him she had heard the rumor that Ed was the the first normal patient today! Guess they had some real ringers in here this morning. The nurse had put the ultrasound monitor on Ed's lower neck and said he was having twins. The docs and nurses around here are from Comedy Central! The first thing Ed said when they wheeled him back was "Did you order my steak and Guinness?" He said he was awake for the entire procedure. No pain, great blood pressure, and feeling good. He claims it was a surprisingly easy procedure. They gave us an Anniversary meal of sandwiches, coffee, graham crackers, and an orange. The staff here has been excellent, and we are glad the 1st hurdle is completed. Ed will Blog when he is rested at home. Ed's daughter Therese just called and said while she was at a traffic light in Clifton Park and she saw someone drive a car into the building at Friendlys. You heard it here first!
They just brought Ed back at 11:45 and he is doing great! When he got up to surgery the nurse told him she had heard the rumor that Ed was the the first normal patient today! Guess they had some real ringers in here this morning. The nurse had put the ultrasound monitor on Ed's lower neck and said he was having twins. The docs and nurses around here are from Comedy Central! The first thing Ed said when they wheeled him back was "Did you order my steak and Guinness?" He said he was awake for the entire procedure. No pain, great blood pressure, and feeling good. He claims it was a surprisingly easy procedure. They gave us an Anniversary meal of sandwiches, coffee, graham crackers, and an orange. The staff here has been excellent, and we are glad the 1st hurdle is completed. Ed will Blog when he is rested at home. Ed's daughter Therese just called and said while she was at a traffic light in Clifton Park and she saw someone drive a car into the building at Friendlys. You heard it here first!
Thursday August 12th - 15th Wedding Anniversary
Here we are at Albany Medical Center getting ready for Ed's procedure to stitch an apheresis catheter into his upper chest. It is 10:00 and the 45 minute procedure will start any minute. Albany Med. has Wifi so I can Blog from here. Ed hasn't eaten since last night, and the cooking segment on the Today Show is making him hungry. This all inclusive $80,000.00 stem cell treatment will include a sandwich for lunch after his procedure today. We know how to celebrate our anniversary!
Tuesday, August 10, 2010
Double Booked
Monday Ed had two Doctor's appointments at the same time. Typical! Both offices said to show up - so Ed went to Albany Med. for the earlier appointment with the Stem Cell Doctor. They called over to the Oncologists office to inform them Ed would not be showing up for another chemo treatment. Stem Cell Doctor overrides Oncologist. Monday was a Lung and heart test, and many blood samples were taken. The Stem Cell procedure starts Thursday, August 12 with a "port" or "catheter" to be installed in Ed's vein on his upper left chest. This is how we are going to spend our 15th anniversary! Stem Cell extraction will start the following Monday morning at 8, and will proceed until about 12:30.
Preparation this week has included purchasing new bedding, new tires for the Honda, and a major trip to Sam's Club to stock up on food. Monday night was a Peck family reunion with Ed's half brothers and nephew visiting from Texas and Salem, Massachusetts. Ed is upbeat, confident, and ready to get on with it!
Preparation this week has included purchasing new bedding, new tires for the Honda, and a major trip to Sam's Club to stock up on food. Monday night was a Peck family reunion with Ed's half brothers and nephew visiting from Texas and Salem, Massachusetts. Ed is upbeat, confident, and ready to get on with it!
Monday, August 2, 2010
Sunday, August 1, 2010
A wonderfully pleasant, sunny afternoon. Once again, low humidity. I’m updating my blog while seated comfortably on our patio.
A bee has appeared, and circles my laptop.
I’d better not tempt fate. Time for me to close down shop and retire indoors.
Thursday, July 29, 2010
Perhaps my luck has changed. The week so far has been quiet. No crises! I am hoping conditions stay this way until my stem cell procedure commences two weeks from today.
It’s a chemo day today. The center is almost empty. Extremely unusual. I wonder why. Have all these people been cured? Or have they passed on? I wonder what is in store for me.
Some who come here are angry, feeling as if they are being warehoused, waiting in lines, and having trouble finding a seat. I guess they view it as mistreatment by a heartless system.
I have a different take. The crowds here remind me that I am not alone. The fact that treatment is available is a sign of hope, a sign that not many years ago did not exist. What's more, so many here look and seem like they are having a tougher time than I am. I feel for them. But I also realize that I am making progress, and that hope lives on. It reinforces my positive attitude.
Afterwards, I run errands, and then drive to Esperance to visit with my daughter, and my brand-new granddaughter, Sarah, and to drink my weekly cup of coffee made in her Keurig. No greater incentive to heal exists than one’s children and grandchildren. Sarah deserves to have a grandfather that attends her high school graduation. I plan to be there.
Monday, July 26, 2010
A chemo day. Eyes are much improved, but still not totally right. I don’t mention it to the doctor.
An evening visit from some wonderful friends: Nancy and Ralph D. They bring a tasty dessert, which we eat at the picnic table by the river. The special homemade blueberry sauce is unbelievable! What’s more, they also bring, without forewarning us, dinner for tomorrow and beyond! Chili, and a special corn bread. A wonderfully generous gesture, and very helpful during this trying stretch. We owe them a ton of thanks.
We spend the evening in the man cave till dark, watching the small boats speed by, and talking of the old days. Unusual this summer: temps this evening are moderate, and humidity very low. A great visit.
Sunday morning, July 25, 2010
Warm and humid again.
Our great friend Joe F is in town, and we are all celebrating the baptism of his grandchild. This will be a great opportunity to see old friends and relax.
But should I attend? The swelling is slightly improved, but still very evident and uncomfortable. My eyes are badly bloodshot.
I decide to go at the last minute. My affliction will be camouflaged by a pair of sunglasses.
The ceremony takes place at St. John’s Episcopal Church in Troy, where Nurse Cratchett and I were married, two weeks shy of 15 years before. Then we adjourn to the Fairways in Mechanicville for a wonderful lunch and celebration. It is a great opportunity to see old and dear friends like Joe and his wife Janet (plus their children and grandchildren), Peter and Sue M, Nancy B, Donna VZ, and Penny C, and it picks me up.
I’m glad I decided to attend, but it’s a bit of a tough day.
3 AM, Sunday, July 25, 2010
I awaken in the middle of the night with a strange feeling. I check myself out in the mirror in the bathroom. My eyes are swollen, almost totally shut!
Why?
Could it be from the bee sting? Have I eaten something I shouldn’t have? Is it a medication conflict? Could it have been the fan I placed near me to keep me cool during this warm and muggy night?
Who knows? I spend most of the rest of the night placing bags of ice on my face in an effort to reduce the swelling. What would the doctor say this time?
Saturday, July 24, 2010
We spend a pleasant day at the family motel and cabin business in Indian Lake, in the Adirondack Mountains. It’s great to see Donna’s mother and brother. Donna cleans, and I run errands. Her brother, a talented “culinary artist,” sends us home with a container of homemade spaghetti sauce and some venison steaks. I already know they will be delicious. One doesn’t stay skinny for long with his cooking skills challenging your will power!
My side hurts, right where the horse fly bit me. I look at it in the mirror. The bite is infected! Obviously, my compromised immune system has been unable to help it heal.
We decide to stop at MediCall in Clifton Park on our way home from Indian Lake to get it treated. No sense in taking any chances in my condition.
The doctor doesn’t take long. The wound is drained. He then uses a pair of pliers to pull two stingers from my side. It was not a horse fly after all. Two bees had stung me, at the same time and in the same place!
I am prescribed an antibiotic to fight the infection. Nurse Cratchett grows concerned. She is not a fan of antibiotics, and wonders if they are truly necessary in this case, especially with the possibility of drug conflicts. A quick call to my wonderful pharmacist sister quells our fears.
Thursday, July 22, 2010
Chemo day. At least I thought it was.
I inform my oncologist of my recent adventures. Swollen throat and numb face. He looks at me like I have two heads. Nothing like this has happened to him in the three decades of his practice.
Chemo is cancelled.
We need to learn if the numbness is caused by a lesion, perhaps in my neck or skull, growing and pressing on certain nerves. An MRI is scheduled immediately, next door. An hour in “the tube.” We finish, and I head for home.
The oncologist calls later in the afternoon. No growing lesions. The cause of my still-improving swollen throat and numbness lies elsewhere.
Then the good news. Today’s tests show that there is no residual myeloma found in my latest blood sample. Eureka!
At least on the main challenge, the cancer, we are seeing dramatic improvement.
Wednesday noon, July 21, 2010
Two heroes arrive for lunch. It’s Val D and Sue N, both of whom have done so much for me already. They worked hard on the arrangements to purchase the new picnic table, and on its delivery. It was an unbelievable gesture.
Now they are doing even more!
Val has arrived with a magnificent sweet-potato-and-bacon casserole. Sue has brought huge, delectable tuna sandwiches, filled to over-flowing. I’m told all I need to supply is beverages. I can’t hope to match the culinary talents of Sue and Val, but I can do drinks. We spend a wonderful early afternoon seated at the new picnic table, telling tales, reliving the old days, and watching the yachts float by. My swelling is improved by this time, and I pass inspection. The pressure of the last few days evaporates, and Val and Sue put me at ease.
Thank God for good friends. Val and Sue: you are appreciated. You did more today than you might think!
Wednesday morning, July 21, 2010
I realize something is wrong the moment I awaken.
My throat is swollen, almost to the point of not being able to swallow. Not sore, but swollen. What’s more, the lower half of my face is numb.
What’s happening?
The immediate question is whether or not this is serious enough to report to the emergency room, or schedule another appointment with my doctor. I decide to wait, to see if it improves as the day progresses. I wonder if I am making a mistake. Is this a chance I should take?
Slowly, during the course of the day, the swelling and numbness are reduced. I decide against a doctor visit. No idea of the cause.
Tuesday evening, July 20, 2010
They say that laugher is the best medicine. It must be true, since I read it in the Reader’s Digest.
Then this evening is a terrific tonic. Patti L and Terri M show up at our doorstep with a pizza. We sit at the new picnic table, under the tree, near the river. Terri spins her yarns, and my sides hurt with laughter. Patti and Terri are wonderful at keeping me upbeat and positive, and we have a fabulous time. But it makes me realize even more how much I will miss my workmates.
Thank you Terri and Patti for the lift you gave me during what has begun as a challenging week.
Tuesday afternoon, July 20, 2010
My primary care physician, Dr. Ryan, was kind but firm. My blood sugar readings today are quite a bit lower than they were yesterday, but still too high. My “a1c” test was high, as well. This is a blood test that takes a long term scan of one’s sugar levels. If these readings continue, my stem cell procedure, still slated at this time for August 12, might be delayed. Time to get serious.
A new sugar medication, Glipizide, is prescribed. Use the meter four times a day. Keep records. Watch your diet. Concentrate on foods with low glycemic indices.
It’s going to take a major adjustment in my lifestyle to win this one.
Monday afternoon, July 19, 2010
I let my guard down.
I had been warned. My medication might push my blood sugar levels sky high, the doctors had said. I was told to monitor it carefully. And I did. For the first few weeks of my treatment. Having repeatedly found levels to be good, I let my attention slide.
A phone call from the oncologist, not long after my blood test and chemo treatment at the center. Blood sugar now over 370! Below 120 or 130 is the goal. I blew it!
I schedule a quick appointment with my primary care physician. He has his opportunity to chew me out tomorrow afternoon. I’m ashamed.
Sunday, July 18, 2010
It’s always a pleasant visit to Ann and Sandy’s home. A picturesque drive through the rolling Washington County hills. A site with a spectacular view. A warm, sunny afternoon, but with moderated humidity, a rare day in recent weeks.
I truly enjoy coming here. We talk about so many topics. Books, politics, travel, music, art, home decorating. I enjoy hearing of the various projects on which they are working. I’m always overwhelmed by Ann’s hand-painted icons. And Sandy demonstrates an all-too-short piece on his new clavichord, tucked in a cozy outbuilding.
Next, we eat a terrific, home-cooked lunch. These folks have fun at home, a place that they have made interesting for themselves and their visitors. A bit later we adjourn to lawn chairs in the shade of a mammoth maple. I enjoy two bottles of Sam Adams Seasonal. Then Sandy serves up his latest invention: an afternoon pick-me-up that he claims heightens his senses and his talents, perhaps even to the level of Bach. He blends a half-glass of coffee ice cream with a topper of iced coffee.
He’s right. It’s powerful stuff. This is the best I’ve felt in months! We hate to leave, but it’s late Sunday afternoon, and a long week beckons.
Thursday, July 15, 2010
Donna and I relax on the patio in the dusk and shoot the breeze. Horse flies buzz us, and take a few bites. One nip is especially painful, on my left side, through my shirt. We decide to retreat, and retire indoors.
I didn’t realize horse flies could be so aggressive. Note to self: avoid them in the future. That’s what your screen house is for, stupid!
A wonderfully pleasant, sunny afternoon. Once again, low humidity. I’m updating my blog while seated comfortably on our patio.
A bee has appeared, and circles my laptop.
I’d better not tempt fate. Time for me to close down shop and retire indoors.
Thursday, July 29, 2010
Perhaps my luck has changed. The week so far has been quiet. No crises! I am hoping conditions stay this way until my stem cell procedure commences two weeks from today.
It’s a chemo day today. The center is almost empty. Extremely unusual. I wonder why. Have all these people been cured? Or have they passed on? I wonder what is in store for me.
Some who come here are angry, feeling as if they are being warehoused, waiting in lines, and having trouble finding a seat. I guess they view it as mistreatment by a heartless system.
I have a different take. The crowds here remind me that I am not alone. The fact that treatment is available is a sign of hope, a sign that not many years ago did not exist. What's more, so many here look and seem like they are having a tougher time than I am. I feel for them. But I also realize that I am making progress, and that hope lives on. It reinforces my positive attitude.
Afterwards, I run errands, and then drive to Esperance to visit with my daughter, and my brand-new granddaughter, Sarah, and to drink my weekly cup of coffee made in her Keurig. No greater incentive to heal exists than one’s children and grandchildren. Sarah deserves to have a grandfather that attends her high school graduation. I plan to be there.
Monday, July 26, 2010
A chemo day. Eyes are much improved, but still not totally right. I don’t mention it to the doctor.
An evening visit from some wonderful friends: Nancy and Ralph D. They bring a tasty dessert, which we eat at the picnic table by the river. The special homemade blueberry sauce is unbelievable! What’s more, they also bring, without forewarning us, dinner for tomorrow and beyond! Chili, and a special corn bread. A wonderfully generous gesture, and very helpful during this trying stretch. We owe them a ton of thanks.
We spend the evening in the man cave till dark, watching the small boats speed by, and talking of the old days. Unusual this summer: temps this evening are moderate, and humidity very low. A great visit.
Sunday morning, July 25, 2010
Warm and humid again.
Our great friend Joe F is in town, and we are all celebrating the baptism of his grandchild. This will be a great opportunity to see old friends and relax.
But should I attend? The swelling is slightly improved, but still very evident and uncomfortable. My eyes are badly bloodshot.
I decide to go at the last minute. My affliction will be camouflaged by a pair of sunglasses.
The ceremony takes place at St. John’s Episcopal Church in Troy, where Nurse Cratchett and I were married, two weeks shy of 15 years before. Then we adjourn to the Fairways in Mechanicville for a wonderful lunch and celebration. It is a great opportunity to see old and dear friends like Joe and his wife Janet (plus their children and grandchildren), Peter and Sue M, Nancy B, Donna VZ, and Penny C, and it picks me up.
I’m glad I decided to attend, but it’s a bit of a tough day.
3 AM, Sunday, July 25, 2010
I awaken in the middle of the night with a strange feeling. I check myself out in the mirror in the bathroom. My eyes are swollen, almost totally shut!
Why?
Could it be from the bee sting? Have I eaten something I shouldn’t have? Is it a medication conflict? Could it have been the fan I placed near me to keep me cool during this warm and muggy night?
Who knows? I spend most of the rest of the night placing bags of ice on my face in an effort to reduce the swelling. What would the doctor say this time?
Saturday, July 24, 2010
We spend a pleasant day at the family motel and cabin business in Indian Lake, in the Adirondack Mountains. It’s great to see Donna’s mother and brother. Donna cleans, and I run errands. Her brother, a talented “culinary artist,” sends us home with a container of homemade spaghetti sauce and some venison steaks. I already know they will be delicious. One doesn’t stay skinny for long with his cooking skills challenging your will power!
My side hurts, right where the horse fly bit me. I look at it in the mirror. The bite is infected! Obviously, my compromised immune system has been unable to help it heal.
We decide to stop at MediCall in Clifton Park on our way home from Indian Lake to get it treated. No sense in taking any chances in my condition.
The doctor doesn’t take long. The wound is drained. He then uses a pair of pliers to pull two stingers from my side. It was not a horse fly after all. Two bees had stung me, at the same time and in the same place!
I am prescribed an antibiotic to fight the infection. Nurse Cratchett grows concerned. She is not a fan of antibiotics, and wonders if they are truly necessary in this case, especially with the possibility of drug conflicts. A quick call to my wonderful pharmacist sister quells our fears.
Thursday, July 22, 2010
Chemo day. At least I thought it was.
I inform my oncologist of my recent adventures. Swollen throat and numb face. He looks at me like I have two heads. Nothing like this has happened to him in the three decades of his practice.
Chemo is cancelled.
We need to learn if the numbness is caused by a lesion, perhaps in my neck or skull, growing and pressing on certain nerves. An MRI is scheduled immediately, next door. An hour in “the tube.” We finish, and I head for home.
The oncologist calls later in the afternoon. No growing lesions. The cause of my still-improving swollen throat and numbness lies elsewhere.
Then the good news. Today’s tests show that there is no residual myeloma found in my latest blood sample. Eureka!
At least on the main challenge, the cancer, we are seeing dramatic improvement.
Wednesday noon, July 21, 2010
Two heroes arrive for lunch. It’s Val D and Sue N, both of whom have done so much for me already. They worked hard on the arrangements to purchase the new picnic table, and on its delivery. It was an unbelievable gesture.
Now they are doing even more!
Val has arrived with a magnificent sweet-potato-and-bacon casserole. Sue has brought huge, delectable tuna sandwiches, filled to over-flowing. I’m told all I need to supply is beverages. I can’t hope to match the culinary talents of Sue and Val, but I can do drinks. We spend a wonderful early afternoon seated at the new picnic table, telling tales, reliving the old days, and watching the yachts float by. My swelling is improved by this time, and I pass inspection. The pressure of the last few days evaporates, and Val and Sue put me at ease.
Thank God for good friends. Val and Sue: you are appreciated. You did more today than you might think!
Wednesday morning, July 21, 2010
I realize something is wrong the moment I awaken.
My throat is swollen, almost to the point of not being able to swallow. Not sore, but swollen. What’s more, the lower half of my face is numb.
What’s happening?
The immediate question is whether or not this is serious enough to report to the emergency room, or schedule another appointment with my doctor. I decide to wait, to see if it improves as the day progresses. I wonder if I am making a mistake. Is this a chance I should take?
Slowly, during the course of the day, the swelling and numbness are reduced. I decide against a doctor visit. No idea of the cause.
Tuesday evening, July 20, 2010
They say that laugher is the best medicine. It must be true, since I read it in the Reader’s Digest.
Then this evening is a terrific tonic. Patti L and Terri M show up at our doorstep with a pizza. We sit at the new picnic table, under the tree, near the river. Terri spins her yarns, and my sides hurt with laughter. Patti and Terri are wonderful at keeping me upbeat and positive, and we have a fabulous time. But it makes me realize even more how much I will miss my workmates.
Thank you Terri and Patti for the lift you gave me during what has begun as a challenging week.
Tuesday afternoon, July 20, 2010
My primary care physician, Dr. Ryan, was kind but firm. My blood sugar readings today are quite a bit lower than they were yesterday, but still too high. My “a1c” test was high, as well. This is a blood test that takes a long term scan of one’s sugar levels. If these readings continue, my stem cell procedure, still slated at this time for August 12, might be delayed. Time to get serious.
A new sugar medication, Glipizide, is prescribed. Use the meter four times a day. Keep records. Watch your diet. Concentrate on foods with low glycemic indices.
It’s going to take a major adjustment in my lifestyle to win this one.
Monday afternoon, July 19, 2010
I let my guard down.
I had been warned. My medication might push my blood sugar levels sky high, the doctors had said. I was told to monitor it carefully. And I did. For the first few weeks of my treatment. Having repeatedly found levels to be good, I let my attention slide.
A phone call from the oncologist, not long after my blood test and chemo treatment at the center. Blood sugar now over 370! Below 120 or 130 is the goal. I blew it!
I schedule a quick appointment with my primary care physician. He has his opportunity to chew me out tomorrow afternoon. I’m ashamed.
Sunday, July 18, 2010
It’s always a pleasant visit to Ann and Sandy’s home. A picturesque drive through the rolling Washington County hills. A site with a spectacular view. A warm, sunny afternoon, but with moderated humidity, a rare day in recent weeks.
I truly enjoy coming here. We talk about so many topics. Books, politics, travel, music, art, home decorating. I enjoy hearing of the various projects on which they are working. I’m always overwhelmed by Ann’s hand-painted icons. And Sandy demonstrates an all-too-short piece on his new clavichord, tucked in a cozy outbuilding.
Next, we eat a terrific, home-cooked lunch. These folks have fun at home, a place that they have made interesting for themselves and their visitors. A bit later we adjourn to lawn chairs in the shade of a mammoth maple. I enjoy two bottles of Sam Adams Seasonal. Then Sandy serves up his latest invention: an afternoon pick-me-up that he claims heightens his senses and his talents, perhaps even to the level of Bach. He blends a half-glass of coffee ice cream with a topper of iced coffee.
He’s right. It’s powerful stuff. This is the best I’ve felt in months! We hate to leave, but it’s late Sunday afternoon, and a long week beckons.
Thursday, July 15, 2010
Donna and I relax on the patio in the dusk and shoot the breeze. Horse flies buzz us, and take a few bites. One nip is especially painful, on my left side, through my shirt. We decide to retreat, and retire indoors.
I didn’t realize horse flies could be so aggressive. Note to self: avoid them in the future. That’s what your screen house is for, stupid!
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