Thursday, December 31, 2009

Happy New Year!

Tomorrow is the start of a new year and a new decade. I hope every one of us will enjoy a wonderful 2010. I hope we enjoy peace and prosperity. I hope we will be blessed with joy and happiness. I hope we will enjoy the beauty of the world around us. I hope we will be bathed in the love of friends and family. I will raise a glass tonight and offer a toast wishing you all a wonderful 2010.

Monday, I resume chemotherapy, so I am hoping 2010 will bless me with a long, uneventful remission.

Oh! I almost forgot. I hope one of you will win the Powerball!

Friday, December 18, 2009

Very good news

I had a blood test Monday and I have been anxiously pacing beside the telephone, practically begging Nurse K to call me. I had been warned at the lab that, since additional tests were being made, especially M-spike, the tests would take longer to be evaluated and reported to Dr. Hema.

Nurse K just called. My hemoglobin is now 12.7, up from 12.2. That's a great improvement. The normal range, depending on who you read is 13 or 14 to 18. I am rapidly approaching normal!

The M-spike reading was 1.07, down from 3.16 in October. A person in remission would have a reading of zero.

Last October, the IgM reading was an alarming 5120 versus a normal range of 60-263. Today, the level is 1520. That's still a high number, but shows tremendous improvement!

Today's weight: 174.

All of these signs point to great improvement and trending towards remission. My overall health and energy bear this out. I feel better now than I have in several years.

Needless to say, I am very happy. My adorable wife is very happy. I resume treatments on January 4 and hope that my numbers will continue to improve.

What a wonderful Christmas gift I have received!!!

Saturday, December 5, 2009

Round Two

My second round (of six!) treatments is complete. These treatments take place every day for five days, then four weeks off, then every day for five days, etc. My adorable wife and I traveled to Big City every day this last week and I had an hour or so of infusion. They leave the IV in my arm for three days and remove it at the end of treatment Wednesday; a new IV is inserted Thursday, which remains until treatment is finished on Friday. Yes, gentle readers, that means you get to sleep with a sharp needle in your arm four nights out of five. Just part of the price you pay for lymphoma and its treatment, I suppose.

I had another very sad moment in the infusion room; I saw a young couple, in their 20s, I'd guess. The young woman was in the chair being fussed over with great care and compassion by the nurses who work the infusion therapy room. The man was in a visitors chair acting the part of the caring, compassionate partner.

I actually left the facility in tears.

It's one thing to get a cancer diagnosis at age 66, when you have lived a very full life, spent many years married to the love of your life and have lived long enough to hug your grandchildren. It's quite another to get such a diagnosis at, say, age 25, when much of your whole life is yet before you. For her, it will be quite different from what she and her partner hoped for. I am praying that she will have an early remission and a long life.

I am doing quite well. My health and energy are just great. My weight is steady at 172 and I hope I have not created a gravy biscuit monster! My next blood test is in two weeks, instead of one week, because Dr. Hema is so impressed with my progress. I will have a respite from treatments until January 4. All the better to enjoy the holidays!

I hope you will all enjoy the holidays, too. Hug each other from me. We never know what the future holds and I am quite sure you can not overdose on hugs!

Monday, November 30, 2009

Back to chemo

We enjoyed a wonderful Thanksgiving holiday with our younger son, daughter-in-law and twin grandchildren. Our Thanksgiving dinner was awesome! It was great to have a respite from the treatment room and weekly blood tests in order to spend time with family.

Now it is back to the treatment room for the next round of treatments. Dr. Hema was very encouraged with the results of the blood tests that were previously taken, as well as the test taken before today's chemotherapy. He said that there is no doubt that the chemo is doing what it is intended to do: kill lymphoma! My overall health, energy and weight all support this.

My adorable wife and I will be going to Dr. Hema's office again Tuesday through Friday. Thankfully, these are short treatments, taking about an hour. However, any field trip is an excellent excuse for a big lunch in Big City!

Today's weight: 171.5!!!

Tuesday, November 17, 2009

Another great report!

Nurse K, who is becoming my new best friend, called a few minutes ago with the results of yesterday's blood test. My red and white blood counts, which had been abnormally low, are both now normal! My hemoglobin is now 12.2, up from 11.7 last week. It is getting very close to the low end of normal for an older male, which is 13 or 14, depending on which resource you read.

All this suggests that the lymphoma, which has been negatively affecting my overall health, is being stopped!

No blood test is required for this Monday, but the following Monday, November 30, it's back to Big City for the next round of treatments.

More good news: today's weight was 170! Yippee!!! I might actually skip desert tonight.

Wednesday, November 11, 2009

A very good report

Nurse K, who is Dr. Hema's nurse, called today to report that the results of my Monday blood test were in and very good. She said the white blood count was slightly below normal but no where near the danger area. The 'danger area' I believe, refers to such a reduced immunity that every passing germ is a very dangerous threat. She also said my hemoglobin is now at 11.7, up from 10.9 just a week ago.

These results suggest that the fludarabine treatment is being tolerated very well. I hope it is having the desired effect; the eradication of lymphoma. Having gone through the agony of rituxan and its side effects, and no real improvement, I can only be cautiously optimistic. Dr. Hema and I passingly mentioned a third therapy, Zevalin:

It is, as Wikipedia says, currently the most expensive drug available given in a single dose, costing over US$ 24,000 for the average dose. I hope you will keep paying your taxes so that Medicare can take care of me!!!

Saturday, November 7, 2009

A common cold

It seems that one of the characteristics of fludarabine, the chemotherapy I am currently taking, is that it increases the risk of opportunistic infections significantly. I believe this means that any old germ floating around will be killed by you, the gentle reader with a robust immune system, but will thrive in me, with a greatly weakened system.

I reported a scratchy throat and a woozy stomach which emerged almost as quickly as the first round of fludarabine was administered. It has progressed to what seems to be a common cold. I have had a cough, the usual sniffles and no fever. I have been monitoring my temperature throughout, since it is an indicator of more serious illness, especially influenza. So far, no readings above normal. I am on schedule to receive the flu vaccine in a week, although the H1N1 vaccine has not appeared in my particular corner of South Carolina quite yet.

I seem to be recovering from the cold normally.

I received a copy of the latest blood tests and about half the readings were abnormal; either too high or too low. My old pal hemoglobin, which ought to be in the 14-17 range, was 10.9, down from 11.2 a month ago. I have not heard from Dr. Hema, so I assume it means that, although my numbers are lousy, they are not unusually lousy for a guy with lymphoma undergoing chemotherapy.

Small consolation, isn't it!?

My spirit remains high. Dr. Hema and I and the entire team have to find and implement the solutions to this problem. We can and we will. It's just a matter of time.

Tuesday, November 3, 2009

Five down, my first blood test and new symptoms

The first round of every day treatments, out of six rounds, is done. The treatments only took about an hour each, however, the treatment facility is on the farthest, from us, edge of Big City. It is therefor a three hour process to get there, get a treatment and get back. Inevitably, there are other errands to run and so it's really half a day!

I had the first of three weekly blood tests but have not yet seen or heard the result.

I have developed three symptoms. First, I got a scratchy throat. At first, I thought my reduced immune system had admitted a cold or flu, but it doesn't seem to be getting much worse or much better. I hope it is not the flu, especially of the H1N1 variety. I have not run a fever.

Second, I have a funny red rash on my forehead and, to a lesser extent, on my cheeks. My adorable wife has spread on lotions which seem to do little to alleviate the rash. They do feel cooling and I certainly enjoy having her loving care!

Last, I have episodes of indigestion that don't seem to respond to any massive amount of antacids. Fortunately, it only seems to happen after I eat...

These symptoms are a good deal less uncomfortable than the symptoms post-rituxan and so I can and will endure them fairly easily.

I regret that my dear sister P and bro-in-law D have spent some of their visit watching me deteriorate. I felt just fine as they were arriving and never felt that I would suffer any symptoms at all. I suppose that one of the lessons of lymphoma is to expect the unexpected.

Thursday, October 29, 2009

Three down...and a zillion to go...

..or so it seems, since the entire regimen goes on for six months.

I have no symptoms post-chemo, so far. I feel just fine. Dr. Hema asked, the other day, if I had run a fever. Truthfully, I never checked, because I never had the slightest reason to suspect a fever. Since then, I have been checking every four hours or so and keeping a log. So far, I have not exceeded 98 degrees.

I am very happy that my health is good; I will greatly enjoy my visit from my sister P and bro-in-law D. She and I were a bit concerned about what my condition might be.

The medication I am being infused with works by destroying B-cells, to which lymphoma cells attach. This has the effect of drastically reducing one's resistance to infection. This is a bit scary in a world fighting swine flu. I am therefor avoiding contact with people. For example, Sylvia had an appointment Tuesday afternoon, after my infusion. I stayed in the car with the radio and a magazine. We are going to lay in a supply of groceries today; I will finish the magazine in the car and smear ourselves with Purel after we get the groceries loaded in the car.

So far, so good!

Monday, October 26, 2009

Chemo begins

The drug fludarabine is indeed, as I indicated in the last post, administered once a day for five days. Then there is a four week break and then another five day regimen, repeated until six (!!) regimens have been administered. That's a total of six months! Wow! I was naive enough to think two months to get the rituxan done was a bit much.

The good news, if there can be any, is that the treatments take just about an hour. I keep my IV needle inserted for three days so I am not punctured anew every day. After Wednesday's treatment, it is removed and a fresh one is inserted on Thursday, which remains until Friday's treatment is finished. I am starting to have needle tracks!

So far, there are no side effects at all. I feel just perfect. I hope I am not exposing my naivety yet again.

Here is a description of the new drug:

Saturday, October 24, 2009

A disappointing report

Dr. Hema called me today, yes, on Saturday, to report that he received the results of the blood tests. The hemoglobin, which was at 11.2 is now 11.2; which is no improvement. The M spike reading, which is a pretty clear indicator of lymphoma, has gone from 2.0 to 3.16 since July. In a patient in remission, it is zero. He said he was disappointed that the rituxan didn't work for me, since it was lengthy and had pretty rough side effects. (Well, me, too, Doc!)

He recommends a round of fludarabine, a chemotherapy drug that is administered every day for a week. He said he would try to get it set up for Monday through Friday. My dear sister P is coming to visit Friday, so I am trying to set up the exactly correct schedule so I can have a treatment, go to a late lunch and then get to the airport at just the right time to hug P!!

If the treatment room has room, it looks like I start chemo this Monday.

Tuesday, October 20, 2009

A report from Dr. Hema

Dr. Hema called this morning after he received the results of the PET scan. He said the lymph nodes did not appear any smaller, but neither did they appear any larger. He reiterated that the enlargement was very small. I assume that means that it is very difficult to measure a meaningful difference between 'very small' and 'very, very small.'

He said that the blood tests, due to be drawn tomorrow, will be more informative. There are markers that he will examine to determine if the lymphoma has subsided, as well as our old pal, the hemoglobin level. I plan to ask for my own copies of the blood test results so that I can (mis)interpret the results for myself. He said the samples will need to be sent out and by the time they are returned and interpreted, it will likely be next week before I get a report from him.

This is certainly not the home run, let's throw a parade report I had hoped for, but at least it's no worse. As well, the PET scan is only a part of the story. Let's hear the whole story before we draw any conclusions.

EDIT: Last hemoglobin reading: 11.2; today's weight: 166.

Monday, October 19, 2009

Yet another trip to Big City

Today was the PET scan. You are injected with radioactive fluids (in my case, a not very tasty banana shake) and the radioactive material, through the miracle of science, clearly shows areas of heightened activity, especially cancers. What Dr. Hema and I are looking for is no or very little activity.

This was a 3 1/2 hour process. I feel very sorry for my adorable wife; she sat in the waiting room and knitted, glancing at her watch. I was in a bed and, thanks to a self-prescribed dose of Benadryl, slept while the radioactive shake permeated my body. "They was givin' me ten thousand REMs a day..." (Sorry, Jack!)

This is a big step in the process that I am glad to have behind me. Wednesday, I have blood tests and then await a good report from Dr. Hema. You will be the second to know!

On the way home, we treated ourselves to a late lunch or early dinner (Linner?) at Apple-Chili-Charley's. I must compliment them; at 3:45 pm, you get an immediate booth and very prompt service.

Friday, October 16, 2009

Feeling great!

I have no symptoms typical of post-infusion. I have a tremendous appetite and food tastes great. I am sleeping eight full hours with no too-hot or too-cold episodes. I am thinking of putting on a red cape and flying around the neighborhood faster than a speeding locomotive!

Next Monday, I have a PET scan and Wednesday I have blood tests. I hope, not long after that, I get a very happy telephone call from Dr. Hema!

Today's weight: 165. My goal: 170. Another gravy biscuit, please!

Saturday, October 3, 2009

Feeling good!

I feel pretty normal today; yesterday was a good day, too. I've had no fever, sweats, chills, convulsions, visits from aliens, paranormal experiences, nor out-of-body experiences! I am pronouncing myself out of symptoms. It is now time to resume my morning walks and get back to 3 miles; time to get some tone back into my puny body and time to not only act normal, but be normal.

My weight this morning was 165.5. I think that is a hopeful sign, because I had been as low as 158 and struggling to keep it that high. Another gravy biscuit, please!

The next step is blood tests on October 21. They will thankfully be done at my primary care doctor's office, about 5 minutes away, rather than at Dr. Hema's office, about 45 minutes away. Dr. Primary is to fax the results to Dr. Hema.

I hope that I have little to report until October 21.

Wednesday, September 30, 2009

Feeling better

I had a pretty good day yesterday, with no fever, sweats or chills. My appetite was good and I ate three good meals. However, last night, I suffered from night sweats and woke up about 2:45 am with both me and the bedding drenched. Waking up in clammy, damp bedding does not promote healing, in my opinion.

Today, I feel almost normal; less sluggish than before and enough appetite to invite my adorable wife to Big Lunch. That is a late lunch at a restaurant where we eat dinner-sized portions and have the luxury of lingering over coffee or a glass of wine.

I hope that this may be the beginning of the end for these post-infusion symptoms.

I have been treated very well by Medicare and my medigap provider; having paid almost nothing out of pocket and never having a coverage fight with either. However, I received a notice from my medigap provider that they were denying a bill from provider U, who I had never seen! After a phone call, the billing lady said that she didn't know why it got submitted as provider U, that it was actually provider S, who I have seen many times, including the date on the notice from my medigap provider! She promised to get it fixed and I promised to keep my checkbook sequestered until then. I hope my painless treatment by Medicare and my medigap carrier will resume. This was not, so far, painful; only a minor inconvenience.

Monday, September 28, 2009

Better...or maybe not

Yesterday was a pretty good day; no fever, no chills or sweats and a good appetite. Today, however, about 1:45 pm, I felt warm and had no appetite for lunch. I took my temperature and found it to be 101.2. I took a big dose of Tylenol and confined myself to bed. Now, at 5:20 pm, I feel better and have no fever. I am even looking forward to dinner.

These symptoms seem milder than before and I hope they will turn out to be of shorter duration. I was encouraged by yesterday and this morning, when I had nothing more than sluggishness. In any event, I am one day closer to the end.

Saturday, September 26, 2009

Post-infusion symptoms begin

I awoke this morning feeling sluggish and with a fever of 99.9. I am perspiring profusely. I had hoped to not have these symptoms this time, but I was not to be spared. Of course, the good news is that these symptoms don't last forever and I am one day closer to the end. It looks like I will be a sick old dog for a few days.

Thursday, September 24, 2009

We're done and done

We should be out in about 15 minutes, done with the final treatment! Woo hoo! Then the after-symptoms, if any, can start and subside and then we can wait for blood tests in about a month and a PET scan yet to be scheduled. I am looking forward to remission and a general improvement in my overall health.

Day 2

This is the second and final day, of infusion #4, also the final, hopefully for many years to come. So, far, there has been no drama like yesterday. It's just a long, boring day, but a day I have been looking forward to for a long time; that is, the last day.

History tells me to expect ten days or so of post-infusion symptoms. Then I should be at least as well as I was before this all started. Since my B12 is now normal and my hemoglobin is creeping towards normal, I hope my health overall is improving, and that I may feel even better than before!

Lunch time is a hoot. Some spouses/significant others buzz on over to the local fast-food place and come back with greasy cholesterol-laden food for two, probably not ideal for a cancer patient. Some just don't eat, probably also not ideal. Some graze the provided baskets of cookies and crackers. Mrs. Over-achiever, my adorable wife, brings a fairly larger cooler with sandwiches, chips, bananas, drinks and other treats. We get looks, like, why didn't we think of that.

I asked her if we could start with chips, salsa and beer and then continue on to cold shrimp and then finish up with pumpkin cake and espresso. She just narrowed her eyes and gave me a bad look; I took that to be "No."

So far, so good. More later.

Wednesday, September 23, 2009

Color me outa here!

Bag #4, that is the 400th mg, is just about done. Patients have come, had therapy and gone, until we are the last ones here. We should be done by 5:00 pm and then off to dinner and a restful night before tomorrow, when I get another 339 mg. The odd amount, 739 mg, is derived by a formula, the main components of which are height and weight, thus making the dose proportional to the mass of the patient.

The light at the end of the tunnel is getting really bright now! As the old saying goes, I just hope it's not the headlight of an approaching train!

More tomorrow.

In the treatment room

Things started off well enough, including a report from Dr. Hema that my hemoglobin is continuing to improve, albeit slowly, now at 11.2. Also, a sometimes indicator of anemia, B12, is normal! However slight these improvements may be, they indicate my system is slowly returning to normal. I love good news.

Soon after the rituxan was started, my face became very red and I felt nauseous. So, once again, off I rushed to the restroom, IV pump in tow. I felt very sick for a few minutes, but never actually threw up. These symptoms subsided about as fast as they arose after the rituxan was stopped. An anti-nausea drug was administered and then the rituxan restarted. So far, I am tolerating it well.

This will be a long two days. It is now about 1:30 pm and we are just about done with the first 100 mg of rituxan, out of 739 mg required.

My bright spot is my adorable wife who is here at my side helping me every agonizing step of the way.

Sunday, September 20, 2009

Great improvement

I had a great day yesterday and so far today, I have had no fever, no chills or other symptoms. I really feel rather good! These ordeals, post-infusion symptoms, are very difficult, but that's what it takes to get, hopefully, to remission. Today proves they just won't last forever.

Today, we will be visited by my niece A, her husband K and their very cute little son, P. We are looking forward to seeing them and I am very glad I am relatively well, so that we can all have a pleasant visit.

Wednesday and Thursday, it's back to Big City for treatment #4! Hopefully, this will be the last infusion for a long, long time. As always, I will post to this blog from the treatment room. I actually read your past comments right in the chair. They make me feel that all of you are lifting me to do what needs doing and press on no matter how tough it feels at the time. Thank you all.

Wednesday, September 16, 2009

Post-infusion symptoms worsen

I have not posted in a few days because there really is no news. I feel lousy, my symptoms continue and I so want to have this over and done! I experience sweats and then shivers and my body never quite seems to be at a comfortable temperature. I run a temperature most of the time, despite taking the medications Dr. Hema and Dr. Infekto suggested. After the previous two infusions, the symptoms declined in about a week; well, tomorrow is a week. Let the symptoms subside!

The silver lining is that next week, the 23rd and 24th, is my fourth and final infusion! I can see the light at the end of the tunnel.

Today's weight 164.5. It sure was fun weighing 174 for a day or so. I hope the lymphoma going to remission will improve my general health, especially my anemia and low iron, and I can get to a physique somewhere above 'scrawny.'

Saturday, September 12, 2009

Post-infusion symptoms emerge

I had high hopes that the infusion, done slowly, over two days, along with the ibuprofen, would alleviate most or all of the symptoms I have experienced previously. Thursday and Friday I felt rather well. Today, Saturday, I have had a fever, cough, chills and flushing in my face. I have treated them with Tylenol and Benadryl. I read somewhere on the internet that ibuprofen reduces the effectiveness of my cardiac arrhythmia medications. Sure enough, I awoke this morning with a rough and irregular heartbeat. I will decline the ibuprofen until Monday, when I can consult with my professionals.

Never a dull moment!

I will endure whatever it takes to get to remission.

On a somewhat humorous note, my weight has gone up alarmingly! Before we went to Cape Cod, I weighed 158. Yesterday morning, I weighed 174.5! Dr. Hema suggests that the infusions are piped in with saline solution and that after an alarming number of visits to the bathroom to evacuate the excess, I will be back to normal; that is, scrawny. Oh, well, it was fun for a while!

Thursday, September 10, 2009

Back in the recliner again...

Out where a friend is a friend
Where the lymphoma guys feed
On the lowly rituxan weed
Back in the recliner again

I am finishing up yesterdays infusion. Nurse P expects it to take until 3:30pm or so. I took the ibuprofen last evening, as recommended by Dr. Infekto, and I feel really very well. I have high hopes!

As you may know, I am a cardiac arrhythmia patient and take medication to regulate my heartbeat. As a consequence, my pulse and blood pressure are generally a bit lower than most humans, at least the living ones. The nurses were indeed impressed with this reading, 84/42!

Wednesday, September 9, 2009

Back home

As predicted, infusing the rituxan slowly enough to not trigger severe side effects, and cause a minor panic amongst the medical staff, did not allow the entire dose to be given by 5:00pm. Therefor, we must return tomorrow for the remainder. It'a bummer, but by this time tomorrow, I will have three infusions out of four under my belt...well, under my skin! I will again blog from the recliner.

The only great news is that we passed by many high calory, high carbohydrate, grease-ball retaurants on the way home. We stopped at one of my favorites and I stocked up on all the calories I could manage.

This morning's weight: An encouraging 164!

Treatment room II

About 12:00pm, I experienced a beet-red face and extreme anxiety. I also felt that I could be nauseated if I just let myself think about it. Of course, if you try not to think about something, that's all you can think about, so off I went to the restroom, dragging my pump behind me. I was not sick.

Nurses, physician's assistants and Dr. Hema appeared just about instantly. They stopped the rituxan and started a medication to counteract nausea. After thirty minutes or so, when I was feeling much better, they restarted the rituxan at a very slow flow rate. They now seem to think that I will not be able to get the entire dose of rituxan infused today, since it is being administered so slowly, so that I will have to come back tomorrow. After all, these people have lives, spouses, children, etc. and like to go home at a decent hour.

I am hooked to a blood pressure cuff and pulse oximeter (see photo, used to check oxygen saturation in the blood) all the time. My vital signs are checked frequently. So far, they are fine.

In the treatment room

Dr. Hema was pleased with the report from Dr. Infekto and we are going ahead with rituxan treatment #3 of 4. He expressed admiration for my willingness to go through the post-infusion symptoms in order to get the treatments done. I told him that if that's what I have to do to get to hear the "R" word (remission) from him, then I was going to do whatever I had to do. The final treatment will be scheduled in two weeks, after any symptoms have subsided and I am back to full health. I hope that the symptoms will be alleviated by the medication that both doctors recommend.

This is my home for the next eight or so hours. More news later.

Edit: Some things I put in the blog to document my progress for my own needs; you are very welcome to read it, although it may seem obsessive/compulsive to you, it helps me document my progress.

Dr. Hema showed me my blood test result from today's tests. My hemoglobin reading was 10.9. The first blood test he ever gave me was 9. The normal reading is 14-17, with older men tending towards 14. The improvement from 9 to 10.9, almost 2 points closer to normal, suggests good things are happening under the hood! This is a bit of good news that I am thrilled to hear, however slight it may be. I love good news!

Friday, September 4, 2009

Another visit to Big City

I saw the infectious disease specialist, Dr. Infekto, this morning. He took a very thorough history and description of my post-infusion symptoms. He examined me carefully and pronounced that while most patients have few or no post-infusion symptoms, some do. I am just lucky enough to be in the some category. He suggested an over-the-counter medication to try to counteract the flu-like symptoms and said he saw no reason to not proceed with the next two rituxan infusions. He said he would fax his findings to Dr. Hema by the end of the day.

Whew!!! I was afraid he would stop everything while he put me through another battery of tests which would further delay the progress towards, hopefully, remission.

My adorable wife and I celebrated with a big lunch and a movie. We are planning to further celebrate with dinner with friends.

Wednesday, September 2, 2009

Back from the Cape!

We are back. I feel stronger than when I left and I certainly made a pig of myself at every meal, so I hope I gained some weight.

Our son G and I went on a whale watch and I was lucky enough to get this shot. It is a humpback whale starting a deep dive to feed on the bait fish that thrive in the Stellwagen Bank. It was a beautiful, sunny day and I actually got a bit of sunburn. I am almost starting to look human again.

I have high hopes that my two remaining rituxan treatments will go relatively uneventfully.

Thank you all again for all your well wishes; they help encourage me to fight on, even when I feel terrible.

Saturday, August 29, 2009

Greetings from Cape Cod!

We are having a great time here! I feel great and am eating everything in sight. As Brudder often says, "I am on a see food diet; I see food, I eat it."

I felt a bit tired the first day we were here, but I am feeling great now.

Our son G and I have taken a few photographic expeditions with very good results. It seems that I am the technician: aperture, ISO, shutter speed, etc. but he is the artist. We photograph the same scene and his shots are stunning while mine are...well, not. In any case, we are having fun and enjoying being in the fresh air. And, dare I say it, spending quality time together!

I am looking forward to Dr. Hema being amazed by my greatly improved physical state and administering rituxan treatment #3 of 4.

Tuesday, August 25, 2009

Symptoms gone?

Sunday and Monday were both symptom-free. If I had to complain about anything, it would be that the temperatures I have taken over the last few days have been remarkably low. This morning, for example, it was 97.6. I guess if that's the worst complaint I have, I am pretty fortunate.

Next, we are off on vacation for several days. I don't know if I will have internet access where we are staying, but I will take my laptop.

After we return, I will see an infectious disease specialist and, depending on his findings, I will have my next rituxan infusion. I am anxious to get the third and fourth infusions done. Let the remission begin! I will be very happy to have the flu-like symptoms behind me and to be spending my days actively, rather than laying in bed with a fever and chills.

Sunday, August 23, 2009

A perfect day!

Saturday was a perfect day! No fever at any time, no problems with any flu-like symptoms. I feel great!

The path is clear now for a short vacation; we fly away Wednesday. We have been looking forward to this trip and it will be wonderful to go feeling well. Considering my puny weight, 160 at the start of this perfect day, one of my considerations on this vacation will be the area's restaurants. I am dreaming of lobster and eating it surrounded by family and friends.

OK, OK, you got me! The real reason it was a perfect day was that the Fedex man delivered a new Bluray player and that NASCAR televised a night race for me to enjoy and, best of all, I spent it with my adorable wife. I confess.

Friday, August 21, 2009

A more or less normal day

I awoke this morning to a normal temperature! Not wanting to waste the opportunity, we went out to breakfast and to the Wallyworld to buy our groceries. When we got home, my temperature was still normal. Other than a little fatigue, I feel pretty good! Let's hope it stays that way!

Thank you all for your encouraging comments. They mean a lot to me. Keep them coming. You can never overdose on positive vibes!

Wednesday, August 19, 2009

In the treatment room...

...and right back out again.

We have been keeping a log of my symptoms and, especially, temperatures. I have had a temperature, sometimes as high as 103.6, since the last infusion! My adorable wife, the little over-achiever that she is, typed it up and printed it out for Dr. Hema's perusal. I went to the treatment room and Nurse P took the usual blood samples. Then she asked me to follow her to an examining room where Dr. Hema appeared and said he was unlikely, based on my log, to administer a rituxan infusion. He asked me to walk down the hall and get a chest x-ray. Since these are all digital these days, The results were available before I got back to Dr. Hema!

He said that nobody, either in his practice, or on the internet, where doctors exchange information world-wide, has flu symptoms for a full week after infusion. He is therefor understandably cautious.

He is referring me to an infectious disease specialist to try to find out what's going on.

While disappointing, I don't want to take unnecessary chances with my already fragile health.

So we are back home after a big breakfast out. One of the unexpected symptoms is that things taste different. I took one bite of white toast with butter and dropped it. It tasted awful. Oreo cookies, for some reason, have changed from 'yummy' to 'yuck.'

Tuesday, August 18, 2009

Complications seem to lessen

Here we are, about to head to Big City tomorrow to, hopefully have infusion #3 of 4. I have suffered flu-like symptoms about as severe as last time from Friday to today, Tuesday. They include fever, cough, loss of appetite, and problems with temperature regulation. One moment, I am dripping perspiration when the thermostat is set at 75, and later, I am covered in layers of clothing, and one of my adorable wife's hand-knitted afgans feeling chilly when the thermostat is at 79! I have taken my temperature regularly and, if it is high, which it usually is, I take Tylenol.

I have made a diary of the temperatures and doses of Tylenol to take to Dr. Hema. I am afraid that the next infusion will be postponed until my health further improves. Bummer.

Please stay tuned! I am taking my laptop and will update you all from the treatment room...hopefully.

I have been reluctant to add post after post which say the same thing: I feel lousy.

Friday, August 14, 2009

Slight complications

Thursday evening, I felt chilly even though we keep the air conditioning at 78. I also felt quite drowsy. I went to the bedroom and, the next thing I knew, I had slept two hours! After I checked my emails, I shut down the computer and went right back to bed. I slept from 11:00 pm to about 7:45 am!

This morning, I awoke to feeling sluggish and with a temperature of 101.6. While these symptoms are a bit uncomfortable, they are no where near what I experienced after the first infusion. If I have a bit of a rough ride after each infusion, but we can get this darn thing into remission, then that's a price I am very willing to pay.

I will be very interested in how long it takes for this to subside this time. I just want to be in top shape Wednesday so I can get the third infusion behind me.

Today's weight: 163!

Wednesday, August 12, 2009

Back at home

Finally! I finished the infusion at about 5:00 pm. Wow! 9 to 5 sounds a little too much like work. Driving through the rush hour traffic in Big City is a bit much, too. However, the second rituxan treatment is finished. Two more to go. As always, Nurse P (P the Piercer) and Dr. Hema were very helpful, sensitive and caring. I am glad they are my team.

We stopped at our favorite pizza place on the way home. It was delicious.

I will be anxiously awaiting the absence of side effects until next Wednesday's infusion.

I very much appreciate your comments and emails. Your support and love seems to lift me and help me endure the treatments and side effects. I have read and reread them right in the treatment room. They never fail to make me smile. Thank you and keep them coming.

In the treatment room II

2:56 pm - Well, the rituxan is being infused, albeit slowly. Nurse P thinks we should be done by 5:00 pm. This is getting tedious and boring, but I'd like to get it done in one day, rather than two. If I have to come back tomorrow, that means blood testing and pre-medication all over again. Yuck!

So far, no more weird side effects. I am even contemplating stopping for pizza and beer on the way home, so I couldn't be that bad!!

In the treatment room...

11:44 am - We got to Dr. Hema's office and after looking at my blood tests, he agreed to start the next rituxan treatment. After the pre-medications, the rituxan was started at about 10:30 am. Unfortunately, side effects started rather quickly. I became rather red in the face and felt quite uneasy. I felt a wave of nausea overcoming me and rolled my infusion pump with me into the restroom and was sick. As quickly as it came, the nausea feeling left. The nurse, under advisement of Dr. Hema, stopped the rituxan and is now administering a treatment for nausea. The rituxan will restart in about 15 minutes at a slow rate. The nurse thinks it will take until about 4:00 pm to get done.

Dr. Hema says the tests for viruses were all negative except there is a very slight indicator for Epstein-Barr. He said he consulted with other experts who opined that the symptoms were so slight that they would not even treat for it.

Almost every recliner is full today and some of the patients are young; 30's or 40's. It's one thing to get a cancer in your 60's or 70's, when you have enjoyed a nice life and lived to see your grandchildren, but it's quite another thing to be battling the fight of your lifetime, literally , at 35.

My adorable wife is sitting here patiently, lending her full support. One could not ask for more in a relationship. I am a very lucky man. Thank you, dear.

Happy birthday to one of my sons, G. We look forward to our visit.

More later.

Sunday, August 9, 2009

I feel good, I knew that I would, now.

I have no symptoms at all now. I am back to my morning walks. I hope this means that I am all ready for Wednesday's treatment. I am anxious to get this all done and behind me. This is pretty funny, actually. Here I am begging and praying that I will be allowed to endure six hours of needles and noxious fluids! Please, sir, may I have another?

This cartoon hung on the refrigerator at my father's home for many years. Little did I know what it would eventually mean to me. No matter how many punches this thing throws at me, I must punch back...harder!

We are anxiously awaiting Wednesday's visit to Dr. Hema and, hopefully, next rituxan treatment.

Wednesday, August 5, 2009

So close and yet so far.

12:25 pm -- Here we are, back at home, but I had no second rituxan treatment.

As is usual, when I arrived, they took the usual vital signs; pulse, blood pressure, temperature, etc. Then when one enters the infusion room, blood samples are taken and analyzed. After a time, Dr.Hema came in and asked about my temperature and other history over the week since my last rituxan infusion. He opined that the issue may be virus activation, a rare side effect of rituxan. Rituxan evidently wakes up the dormant virus and tells it to get busy. Treatment can be given to stop it, but it's necessary to identify which virus is the culprit.

All adult human bodies contain viruses that, in almost all cases, remain dormant for life. An example is Epstein-Barr virus. As many as 95% of adults between 35 and 40 years of age have been infected. There are several other viruses that infect most adults but remain dormant for life.

In order to identify the particular virus to treat for in order to resume the rituxan infusions, Dr. Hema ordered more blood samples. I am starting to think Dr. Hema's answer to most problems is to draw blood!

He said that there is never a dull moment with me and I told him it would be great fodder for a medical journal article he should write, "The Man With Every Single Known Symptom!"

We are disappointed, but I surely want to do this right. The next appointment is Wednesday, August 12.

Tuesday, August 4, 2009

Another trip to Big City

We went to Dr. Cardio's office today to be fitted with a heart rate monitor and have an echo-cardiogram. Perhaps this will help us to figure out what about the rituxan triggers cardiac arrhythmia and, hopefully, stop it before it starts again.

All my symptoms are about cleared up. And that's good; now that I am 95% recovered from last Wednesday's infusion, I am all set to have another infusion tomorrow. I surely hope tomorrow goes smoothly and quickly. Whatever it is, I must endure it and get to the end of four treatments.

My appetite seems to be returning. While we were driving home I had a craving for Subway, so we stopped and I finished every bite!

Monday, August 3, 2009

Consult with Dr. Cardio

I called Dr. Cardio's nurse and described the interaction between the Rituxan infusion and my cardiac arrhythmia. She said she would confer with the doctor and call me back. When she did, she said Dr. Cardio said I should take an extra dose of one of my medications and take it if needed. She also said they wanted to put a monitor on me and schedule me for an echocardiogram. They may not get the echo on the schedule, but I am getting the monitor tomorrow at 10:00 am.

I should be quite a sight with an intravenous, a heart monitor and a blood pressure cuff! Can't the doctors figure out 3-4 more things to attach??? Oops! I must be careful what I wish for!

Today, I feel better, maybe 8.5 on a scale of 10. I have had no heart issues and my temperature is largely normal. My appetite is returning, although I'm not quite ready to face a greasy sausage and mushroom pizza!

I hope that the worst of my symptoms are behind me. We shall see Wednesday and beyond.

Sunday, August 2, 2009

Complications seem to subside

I feel lousy,
Oh, so lousy,
I feel lousy and crummy and blah!
And I envy
Any guy who isn't me tonight.

My fever seems to be subsiding, although I always seem to be either too hot or too cold. I have very little appetite, which is very rare for me. I will telephone Dr. Cardio on Monday to ask for his recommendations prior to my next Rituxan infusion on Wednesday. Flu-like symptoms I don't really mind so much, but being a long term cardiac arrhythmia patient, I am sort of excited when my pulse goes wonky.

I hope I will be fully recovered by Wednesday for my next treatment!

Saturday, August 1, 2009

Complications worsen

Thursday night, I awoke at 3:15 am to shivers and no matter how many layers I put over myself, I couldn't get warm. In the morning, I was very hot and no matter how many layers I removed, I was sweating! My temperature was 102.5. I took Tylenol and got up. I then had a near fainting spell and my heart rate became both fast and irregular.

For background, I have been afflicted with cardiac arrhythmia for 30+ years.

I called Nurse K and described my symptoms and she conferred with Dr. Hema. The verdict was to come to his office immediately. When I got to the office, my pulse was 137, compared to my usual 65. Nurse K administered an electro-cardiogram which was examined by Dr. Hema. He contacted my cardiologist and faxed him the electro-cardiogram. The verdict was that an irregular heartbeat is a known side-effect of Rituxan, although Dr. Hema had not actually seen it until me! I was sent home and told that the cardiologist would call with a change in the medication.

I was highly relieved; I thought, for sure, that I would be admitted to the hospital.

By the time we got home, my irregular heartbeat was over. I went to bed and had a great night; never too hot and never too cold.

I have resigned myself to the thought that after a Rituxan treatment, I may have a bit of a rough ride, but that's just a price to pay for getting rid of the lymphoma, even temporarily. The next treatment, on Wednesday, is right around the corner.

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.