Thursday, July 30, 2009

Crisis subsiding

Temperature at 6:10 pm : 101.2

Temperature at 7:01 pm: 99.5

It seems like the Tylenol is working. I feel much better. I suppose, while the body war is going on, that is, for at least the next four weeks, I should expect the unexpected. I will take my temp a few more times and update Nurse K tomorrow...after breakfast out, of course!

Unless things really change for the worse, I am assuming the trouble is over for now.

Slight complications

I didn't sleep very well last night, I got up three times to take antacids. The acid stomach has largely subsided. I feel lethargic and have therefor declared today a rest day. No walk, no photography and absolutely no items from the Honey Do list.

About 4:45 pm, I felt chills so bad that I was shivering. I put on a long-sleeved shirt and pulled up one of my adorable wife's knitted afghans. I leaned back and crossed my hands and they feel burning hot. I then asked my adorable wife to take my temperature. It took her a few minutes to actually find the old school glass thermometer and a few more minutes to shake it down below 98.6. I took the temperature and in a very few moments, it read 102.3!

We called Dr. Hema's office and, by the time we called he and Nurse K were out. Being a very busy hematologist, I suspect he needs to turn off the phones to get paperwork done and see patients in the treatment room and hospital.

I was referrerd to the on-call doctor, Dr. F. We went over my case and he said what I believed all along: there is a vicious war going on in my body. He suggested Tylenol and to wait and see how I do. He said he believes the symptoms will subside and if not, to report to the emergency room.

More later.

Wednesday, July 29, 2009

Finally home!

Because of stopping the Rituxan, administering additional Benadryl and then restarting the Rituxan, I was not finished until 4:20 pm! I feel restless and after we got home, I napped only about 20 minutes. I think they were on their FILO plan; First In Last Out.

Dr. Hema and the nurses thought it was great that I was blogging during this process. I hope they meant that it was great that I was recording this as an interesting experience, rather than being depressed. I think, in a situation like this, or any life siuation for that matter, that attitude is worth 90%. If you think that you can't do a thing, that is, mentally set yourself up for failure, then you probably will fail. However, the reverse it true also. If you tell yourself that you can fight lymphoma hard and you can win, then you probably can.

I can and I will.

Treatment Room III: D'oh!

So close to done and then slight complications arise. I began to feel quite itchy and my adorable wife said my face was extremely red. She alerted the nurse and Dr. Hema appeared quite quickly. They opined that the pre-medication Benadryl had worn off. They conferred and stopped the Rituxan and are now giving me additional Benadryl. My symptoms have subsided. They are taking my vital signs every few minutes. A blood pressure cuff is permanently attached to my arm for the time being.

Nurse K marched a scared-looking man, wife and daughter past us into a private office where, I suspect, he is to start the same process. With apologies to P. T. Barnum, it seems there is a new lymphoma patient born every minute.

I hope we will be done soon, I'm getting grouchy.

Treatment Room II: infusion R us

1:25 pm-- My adorable wife packed a very nice lunch in a small cooler and she packed my fave: PB&J! We just finished.

I am getting pretty anxious to get it done and get out of here. This is almost as bad as flying coach to London. Eventually, you can't find a comfortable place for your body and squirm about trying to sleep, albeit fitfully. This is a day to tolerate and get behind me and to realize that that sound we all hear is the sound of millions of lymphoma cells dying the horrible, painful death they richly deserve.

Technician P says this is the last bag for today. By my dead reckoning, it's about 40% done. Yippee!

In the treatment room...

9:55 am-- Here we are in the treatment room. There are 12-15 recliners with, currently, six patients. Dr. Hema just walked through to check on several of his patients, including me. His nurse, K (for Kindness) has been here twice! Everyone is so caring and kind. I have had my blood tested and given pre-medications but the rituxan has not started yet.

So far, I am not too bored because I am taking in the sights and sounds. I'm sure that by the end of the day, I will be quite bored however. Brudder suggested that sitting in a recliner with my laptop with a TV nearby won't actually be too different from every other day! He's largely correct.

My laptop has a DVD drive, so I have brought a couple of movies. This morning's selection is The Killing starring Sterling Hayden.

My adorable wife is here but she keeps finding excuses to check on future appointments or go to the lobby to make a phone call. I don't blame her one bit!

More later.

Tuesday, July 28, 2009

The treatment plan

My adorable wife and I just returned from Dr. Hema's office in Big City. Dr. Hema reports that the PET scan shows hardly anything. He said it's good news, because that indicates there is hardly any organ involvement and that it's very slow growing. He thoroughly discussed treatment options and we settled on Rituxan taken once a week for four weeks.

It is administered intravenously. The first dose takes about six hours, and the next three take about four hours. It is not chemotherapy and so the usual nausea, hair loss, etc. is not expected. I am not the most patient patient there is, but if this is all it takes to knock this darn thing into remission, I guess I can bite my lip. The first treatment is tomorrow at 9:00 am. Let's get on with it!

He did say that I am right on the edge of not requiring any treatment at all! However, I do have anemia and iron deficiency, so he recommended treatment. He feels that these symptoms will fade away as the lymphoma is treated.

We visited the intravenous treatment room and each person has a recliner and a personal TV. I will be allowed to bring books, magazines laptop!!! I shall blog you from the treatment room!

We are rearranging some travel plans, but largely, we are living life as usual, to the fullest.

Monday, July 27, 2009

Sad news

I have learned that my ex-step-father (yes, we have a complicated family!) has died at age 88 of lymphoma. While I have not been in contact with L for many years, I am very sad. He was a terrific guy and was fun to be with. He sparked my interest in high fidelity audio. My earliest memory of his house was with two refrigerator sized speakers flanking the fireplace with Dave Brubeck on the turntable and the whole thing sounded like the quartet was right in the room with us. I have a turntable and the Dave Brubeck record and today I shall play it and remember fun times with L.

I believe if any of us gets to age 88, with or without lymphoma, then we've had a good run and a nice long life. I enjoyed sharing some of mine with L.

Friday, July 24, 2009

Waiting for Tuesday's update

There is not much to report until we visit with Dr. Hema on Tuesday. I am filled with questions and trepidation, none of which is worth worrying about until Dr. Hema analyzes the PET scan and tells us his recommendation for treatment.

Today's weight: 161.5. We decided to go out to breakfast this morning. Hey, what's the gol dang use of having a bit of a medical problem if you can't find a way to spin some enjoyment into it. Tonight, we are going out to dinner with friends and I intend to embarrass myself again!

More news Tuesday.

Tuesday, July 21, 2009

PET scan day

My adorable wife and I traveled to near downtown Big City for my PET scan. Naturally, the appointment was at 8:45am! That meant we had to endure rush-hour traffic, something I had hoped to have put behind me on my retirement day. We figured out, after getting lost, that it was right across the street from my Dr. Cardio! We went into Dr. Cardio's building and noticed that there is an enclosed bridge over the road. We stood there looking around for the slightest sign to direct us to the PET scan department. Amazingly, two nice ladies walked up to us and asked the poor SC hill people what department we were looking for. We told them and they said it was a bit of a rat's maze to find it and led us directly there! The lead nice lady even asked my name and shook my hand and then introduced me to the receptionist at the PET scan department!

WOW! The entire experience started off so beautifully! I was called almost immediately and taken to an alcove with a bed and the usual hospital drapes. I was injected with precious oils, emoliants, frankincense and myrrh...or at least some magic stuff. I was also asked to drink two nice cold banana shakes and then wait and rest for 90 minutes so the various ingrediants could get busy. After a little snooze, I was taken to the PET scan room and in twenty minutes, I was done!

Nuclear Radiation Specialist J helped me the whole way and explained everything carefully. Everyone at the facility was very helpful and caring.

The PET scan is the next step in the evaluation process. It tells Dr. Hema how far this thing has progressed and helps him set a treatment regimen. I see Dr. Hema a week from today.

As she often does, my adorable wife made a new email pal in the reception area! She is interesting to talk to and a great listener and so makes new friends easily. She brought her knitting and met a fellow knitter.

Today's weight: 161. Today's exercise: trotting through the rat's maze!

Sunday, July 19, 2009

Snaps up!

Snaps up to my Brudder who beat Sis to the email with the response that the famous line, "sap and impurify...precious bodily fluids" is from Dr. Strangelove. I love that movie! For the curious, here is the line:

Well, actually, snaps up to Sis, too. Brudder and Sis have been awesome sibs. Although now, we live many thousands of miles from each other and live very different lives, we are in touch quite regularly and never miss an opportunity to get together. I love you both very much.

When some of my acquaintences mention that they are estranged from a sibling and that they haven't spoken in years, I not only wonder what in the world is wrong with such people, I also feel blessed to have the wonderful family that I have.

I am also blessed to live in a very quiet wooded setting near a Big City. There is hardly any crime, we meet our neighbors on lazy walks and see deer and other wildlife often.

However, should a person need a little procedure, such as a PET scan, it involves a drive into Big City; invariably at rush hour! I guess I have a remarkable set of medical professionals: they only seem to have appointments at 9:00am and 4:00pm!

I am looking forward to getting the PET scan done and evaluated, but I am not looking forward to driving there for an 8:45am appointment.

Today's weight: 162 and today's exercise, a 3 mile walk which is more like a social occasion, since I almost always see a fellow walker that I have seen many times before. Then we have to stop and chat for a few moments. Yesterday, I had a few moments with a big guy with a born-and-bred Carolinas drawl who was walking his oh-so-cute white miniature poodle! He seems more the shepard/retriever/collie type. I guess it takes all kinds...

Friday, July 17, 2009

Will this be my new look?

I wonder if I will soon adopt a Daddy Warbucks/Henry Paulson/Lex Luthor look. I have been very happy, even at age 66, to have a full head of hair. Wonder what I will see in the mirror a few months from now...

Planning the future

I have informed Dr. Hema's office that I prefer the aggressive approach to treatment of my illness and for it to start as soon as possible. They have tentatively set aside July 29 for a possible intravenous chemotherapy treatment. His nurse said the treatment would likely last all day. Wow! I wonder if I can bring a laptop...

This will sap and impurify my precious bodily fluids. Snaps up to the first family member that emails the name of the movie this line is from. No googling!

I am a bit concerned about some of our travel plans. We have reservations in place to visit family in early August and are eying a cruise in early October. The cruise ship has a multitude of amenities, spas, restaurants, casino, movies, etc., but I doubt they have a chemo suite!

I am committed to have as much fun as possible for as long as possible, so we may have to do some juggling.

Today's weight was 161, so, with impunity, we went out to breakfast where, once again, I embarrassed myself with the sheer quantity of greasy, fatty food I ordered and consumed. I have high hopes that if we can get the lymphoma into remission that my anemia and iron deficiency will abate and I can gain some, not too much, weight.

Thursday, July 16, 2009

Way to be professional!

I spent 20 minutes today dealing with a scheduling clerk trying to get set up for a PET scan which was prescribed by Dr. Hema. When his nurse told me that I should be called to set an appointment within 48 hours, she gave me the name and telephone number of the scheduling clerk, suggesting that the clerk was sometimes unresponsive. I expressed my shock, since these cases often involve life and death.

As I suspected, more than 48 hours went by and I had not been contacted. i called the clerk and she acted as if I was an alien from Mars! She seemed to know nothing about me or my PET scan. She took my name and telephone number and promised to call me back. When she did, she announced that they have eight centers; I asked to be referred to the one closest to my home. After getting considerable way through the process, she stopped and explained to me, in great detail, that only two centers do PET scans. I stopped her and said that we were not getting anywhere discussing which center does not do PET scans and let's discuss one that does. She took time to explain why she explained! Finally, I coaxed an appointment out of her.

I wonder how many patients get sicker or die because the system is broken and because it takes a vigilant and aggressive guy like me to get things done. Maybe I should shrug my shoulders and say, "That's just the way it goes." However, I am angered when patients with very serious illnesses just fall between the cracks because the people who are supposed to make things happen...don't.

Why do these people still have jobs?

Wednesday, July 15, 2009

Telling the family

I spent yesterday telling my family the awful news. It was very hard for me to give news to a family member, realizing they would be very hurt by the realization that the Iron Man, old Mr. Bill, might not be around forever. And then, when the conversation ended, hang up the phone and dial the next family member and do it all over again.

There were quite a few tears on both sides of the phone line, as I expected. I have had the advantage of several weeks of doctors visits in which the story unfolded slowly and, thanks to Dr. Hema, gently. By contrast, my family members had the whole gruesome story sprung on them in a few moments. It is, I'm sure, a lot to digest in a short time. I felt especially bad for our son and his family that we had just visited; however, I did not have the results of the bone marrow biopsy when we were there.

I walked the 1.9 mile route today with my camera and tripod. Not much to see today, so I am playing with exposure stacks, a method to expand dynamic range in photography. Once you have photographed every bug, flower and bird for 5 miles in every direction, you just about have to invent ways to take photographs in unusual ways!

Today's weight is 160.5. I am going on a piranha crazy feeding frenzy! I wonder if the nearby diner has that greasy chicken-fried steak special for lunch today...

Tuesday, July 14, 2009

My lil lymphoma

Back from a family visit; bad news

We traveled about 3 1/2 hours to see our son, daughter-in-law and grandchildren on Saturday and returned Monday evening. As I suspected, there was a message on the answering machine from Dr. Hema's nurse. I called on Tuesday morning and she asked me to speak to the doctor. He reported that the bone marrow biopsy shows that there are lymphoma cells in the marrow sample. He said it is lymphoplasmacytic lymphoma. According to various internet resources, it is slow growing and very treatable. It can be brought to remission but generally returns. I will be having a PET scan and a visit with Dr. Hema to evaluate my treatment options. I have indicated I want the treatment to be very aggressive.

This, of course, is devastaing news. My adorable wife and I have shed some tears and, I am sure, will shed many more. We are discussing how to tell our family. Even though this is the 21st century, this is not email news.

I am concentrating my efforts on fighting the disease as hard as possible and enjoying life as much as possible. We are planning a trip next month and a cruise in October. We are plunging forward full speed!

I am still reeling from the news.....more later.

Friday, July 10, 2009

Is it too soon to be nervous?

By my reckoning, and I could be wrong, today, Friday, is the first day I might expect a call from Dr. Hema's office with results of the bone marrow biopsy. By the way, my lower back is still black and blue and tender from a test that was done last Tuesday!

As I understand it, if the result is that there are lymphoma cells in the bone marrow, then I do have a lymphoma that has spread. It will be bad news, but there are treatments and options. If the result is that there are no lymphoma cells in the marrow, it doesn't mean there is no lymphoma; it means that either I don't have it at all or I do have it but it hasn't spread. Further diagnostic steps are called for.

Everything I have read about lymphomas speaks about the likelihood of survival for ten more years. A slow-growing lymphoma caught at Stage 1, that is, no involvement in nearby organs, is supposed to be survivable for ten more years in 70% of cases. Ouch.

Of course, I am quite hopeful that I don't have a lymphoma, however, if it must be, I feel quite confident that I will survive longer than expected. I am healthier than most 66-year-olds. Low cholesterol, low blood pressure, low weight (maybe that's not so good!), and, best of all, almost no stress. I am also motivated to follow the doctor's orders and do the exercises or take the pills or get the rest.

Having said all that, the normal life expectancy for a male in the USA is about 77. If I get there, I can't really feel too cheated.

Today's weight 162.5. I feel that is significant for two reasons. First, I have been concentrating on getting a nice high calorie, high fat lunch every day. It seems like it's paying off.

Second, Dr. Hema said that if I had a fast-growing lymphoma, I would be losing weight rapidly. Instead, I am gaining weight slowly.

Today's exercise: 1.9 miles with photos taken and friends met along the way. I took my ancient GPS to actually track the mileage. It was a bit foggy this morning. It was, and always is, good to be out in the sunshine and the fresh air.

Perhaps not so coincidentally, I am watching the Tour de France. I am stunned by the accomplishments of Lance Armstrong, cancer survivor. At age 37, he is kicking some butt. If things get tough for me, I shall touch my yellow LiveStrong wrist band and believe that if Lance can do it, I can do it!

Off to see the grandchildren and, obviously, their parents tomorrow; about 3 1/2 hours away.

Thursday, July 9, 2009


Elvis Presley had a gold ring with 'TCB' surrounded by lightning bolts. TCB means 'Taking Care of Business.' These days, I am working harder to take care of business.

I am quite certain that this urge comes over anyone that has learned of the possibility of a life-shortening illness. I have been tying up loose ends and addressing a few unfinished projects. The most pressing, in my view is that, although I have a will written in South Carolina, it refers to a separate property memorandum, where one indicates who gets what items of personal property. I completed and signed mine yesterday.

I am also working on eliminating my only debt: the mortgage on the house. I have been sending extra principle payments each month, but I would like to save up enough to feel comfortable sending in a few bigger chunks, say 5% of the outstanding mortgage. Whether I have a life-shortening illness or not, the budget would certainly go easier if there is no house payment.

I received a call yesterday from a person in the office of Dr. Hema. She said the results of my "anemia tests came back and they're fine." What in the world does that mean? When I hear the results of the bone marrow biopsy test, I shall ask, in a polite but pointed way, why the office calls patients with incomprehensible reports.

This is just another example of why a patient must aggressively manage their own health. The doctors and their staff are well meaning but often do not act in the patient's best interests. Here is another example.

When I saw Dr. Hema on Monday, he asked that I obtain a CD with the actual CT scan on it from the imaging center for his study. He explained that if he requested it, he may or may not get it and that if he does get it, it may or may not be in a timely basis. He also explained that if I asked the imaging center for the CD, I would get it instantly. I suggested that, if it fit on a CD, he request it be emailed to him. He explained that the imaging center is in the P hospital system and he's in the C hospital system, implying that different systems don't readily cooperate with each other. Of course, I went out of my way to get and deliver the CD.

Do you think the most efficient way for purely digital data to get from the imaging center to the physician who needs it most and needs it fastest is for the patient to drive it 70 miles round trip? Me, neither.

Wouldn't you think that all these doctors and specialties would have as their first objective to get old Mr. Bill well as fast as possible? Me, too. However, they are evidently hindered by, among other things, petty rivalries: the P's don't really talk to the C's, and don't even recognize the G's! What a way to run a system!

Do you think Mr. Obama's universal health plan will help all this? I don't.

Today's weight: 162. w00t!

Wednesday, July 8, 2009

Exercise and the retired man

When i retired, about 11 years ago, I became, as many retirees do, more sedentary. Most older people become a bit more sedentary and either don't amend their dietary habits, becoming obese, or amend them and become slender. I have never had a great big appetite, so lunch has become smaller and smaller until it is sometimes nothing. Consequently, I have lost about 15 pounds since retirement. It doesn't sound like much, but I retired at 6' tall and 175 pounds. If I may say so, I was looking svelte in my business suit, smartly polished shoes and sincere tie. Now, at 160 pounds, I look scrawny. I will be tracking my weight here, as the possible ordeal unfolds.

I am very glad that I retired at age 55, if I am going to go through a life-shortening ordeal. I have enjoyed ten extra years at the race track, on a raft trip in the Grand Canyon, snowmobiling in Yellowstone, cruising and many other things, while not being encumbered by the requirement to show up at work on time every day. While my pension and IRA are smaller as a result of retiring at age 55, there is one thing you cannot buy: time. I am glad I took the time.

The upside is that when we go out to eat, I don't have to watch the carbs, calories, trans fat or anything else. A few days ago, we went to breakfast, where I unashamedly ordered and ate eggs, bacon, home fries and chocolate cream pie! Yum!

I have tried to be more physically active since retirement. I have always either ridden a bicycle or walked for about an hour almost every day. Lately, I have combined walking with another favorite pastime, photography. I usually walk with my camera over my shoulder and my tripod. My camera and post-processing skills have improved, while giving myself a nice walk in the poison ivy, chiggers and ticks!

I shall be referring to my doctors, in this blog, as Dr. Primary, Dr. Colon and Dr. Hema. My wife shall be known as my adorable wife.

Today's weight: 160.

Tuesday, July 7, 2009

The start of an ordeal??

I have decided to document the events that have lead to my possible ordeal.

We never know the cards that we will be dealt. I think the measure of a human being is whether one copes with and overcomes the hand we are dealt; or whether we put our hands over our eyes and sit on the side of the bed and cry, "Oh, poor pitiful me."

I believe, if the ordeal proves to be an ordeal, that it will be worthy of tears. But I will chose to wipe away the tears and get up and cope; to make my life enjoyable, to make my wife's life as enjoyable as I can and to get out of bed every day and live. It will be interesting to see if my intentions today translate to results later.

I am now 66 years old. Since I was 50, my doctors have urged me to endure a colonoscopy to gauge my colon health; polyps, prostate, bleeding, etc., I assume. I put it off until this year but finally agreed. About 8 weeks ago, I had the test, which was not as bad as I had built it up to be. I recommend you have the test if it's recommended by your physician.

I have also been diagnosed with anemia for many years.

After the test, the doctor reported that the test was perfect, no issues to report....except...he noticed an enlarged mass in my upper abdomen. He scheduled a CT scan. The scan showed two enlarged lymph glands. He sent me a letter telling me that I would be contacted by a hematologist for a consultation. Many days went by without any call. I faxed both the doctor that did the colonoscopy and my primary care physician to ask if I had fallen between the cracks. I was referred to a hematologist on July 6, 2009. To make a long story a bit shorter, he estimates that the chances are 75% that I have a slow growing lymphoma. He recommended a bone marrow biopsy. This is done with a long, fat needle and not enough anaesthesia.

He says that the results may take as much as a week to come back. This will be the longest week of my life.

My very supportive wife is taking, as I am trying to do, a hopeful attitude; that is, don't assume any particular outcome until the reports come in. Then, assume that you can overcome anything.

Today, I spent time doing what I never thought I would have to do for either of us: figure out the easiest way to get off the interstate to the offices of the cancer doctor.

I will blog my progress, hopes and fears. Until I have something definite to report, I will not worry my family and friends.