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.