Good news from the CT Scan

Today was cycle four, day three: a Fludarabine day. While at Roswell we had a visit in the infusion room from Dr R. She gave us the results of last week's CT scan. The chest and abdominal lymph nodes that were enlarged on the previous CT scan have now gone back to normal. This only means that the lymph nodes are clear, not that the cancer is gone from my blood or bone marrow.

Dr R. also said that although it is possible to finish chemo after only four cycles of F-R, she feels it best that I go the full six cycles. We agreed with her assessment as we want the best possible results. This means my last chemo is at the end of March and I may be able to travel again by May. Something to look forward to.

To celebrate this good news I walked to the mailbox and back, for the first time in months. It is a winter wonderland outside as we are in the middle of a snowstorm. The walking was tough because of the deep snow but it felt good to be outside.

Cycle four, day one: Rituxan

Today I began another treatment cycle with Rituxan and Fludarabine. This one is number four of six, so therefore I am celebrating passing the halfway mark.

I always anticipate the Rituxan day with some anxiety, because I had such dreadful aftereffects when I had the first one. But today went fairly well at Roswell. Although we had a 2 hour wait until the drug appeared, there are magazines and individual TV's to help pass the time. A kind volunteer gave me a crossword puzzle book to keep me occupied.

I had the usual drowsiness because of the Benadryl pills. I had chills during the entire 3 hour infusion, even with a blanket on. A sore throat developed, and then restless legs. After I came home I had a bad stomach upset for a while. Nevertheless, it wasn't a bad start to the week as it's all easier from here on in.

CT Scan #2

On Wednesday I had my second CT scan. My doctor wants to see if my lymph nodes that were slightly enlarged at the first CT scan have gone back to normal size. I get the results next week.

It's an interesting experience. After I drank the Barium Sulphate suspension, that tastes like a berry smoothie, I waited 45 minutes to be called in. The nurse inserted an IV line and then I was called into the scan room. I lay down on a long table fully dressed, boots and all. I have to hold very still while I go through a doughnut shaped machine, for 5-7 minutes. About half way through the dye is inserted into the IV line and a warm flush follows over my whole body. There is a taste in my mouth. A disembodied voice intones loudly "don't swallow", then "take a deep breath and hold", then "breathe", then "arms over your head" as I go back & forth through the machine.


About half an hour after it was all over, all of my fingers started to itch and turn red. Fortunately it was a short lived reaction and was gone by the time I arrived home.

The family wheelchair

I can't really shop. I run out of energy very quickly if I try to go in a store. Wal-Mart and Home Depot are great because they both have electric scooters for the disabled that I can drive around for a short half hour shopping trip. Other stores make it more difficult as they may have wheelchairs available but on an upper floor, or at customer service, nowhere near the doors.


So we borrowed the family wheelchair back from my brother-in-law. It was first used for my father-in law before he passed away in 2002, and then my mother-in-law used it until she passed away last summer.


And now its my turn. It folds up neatly and we keep it in the trunk of the car for use when needed. I used it after Christmas in Future Shop when we had returns to do and it worked great. I picked out a couple of movies while Barry was in the lineup. I used it on Sunday in Winners where I was looking at purses. I can propel it myself, or Barry can push me, but it saves my energy for other stuff. People are great; they yield to the wheelchair and they are always very polite.

Cycle three, day twelve

On Friday I went back to Roswell Park for another appointment. I lined up at Phlebotomy for blood to be drawn and then found that they had no orders for me. I went over to the Hematology clinic and the nurse there had to draw up the orders and send me back to Phlebotomy. I'm starting to know the routine well enough that I was pretty sure they would have to draw blood to test to see if I needed a blood transfusion (I didn't).

I did have an injection of Neulasta to help my white blood cells grow, but I am not neutropenic (dangerously low neutrophil count) and that is good news as far as I am concerned. I have two more appointments in the next two weeks to check my blood counts and then I go for another CT Scan of my lymph nodes. Hopefully that will tell us for sure if the chemo is working.

I was feeling pretty good until the Neulasta injection. Since then I have had some pain in my chest area and have been more fatigued than has been typical. It fits with the side effects of the Neulasta.

An overview on fatigue

I look really well. I still have my hair, and my colour is good. I lost weight before my lymphoma was diagnosed and some people have said that I now look better than ever. That being said, when I tell people I am fatigued, they nod and look sympathetic but I don't think they really understand how tired I am.

Fatigue is the most common side effect of both my lymphoma and the chemo. I feel fortunate that I don't have any of the more serious side effects of chemo, such as nausea or hair loss, or an unhealthy weight loss.

When I wake up in the morning I am tired. Barry usually brings me coffee and breakfast in bed. I have a massaging bedrest from Brookstone that allows my arms to be supported while I am sitting up. After breakfast I shower, dress for the day (in sweats usually), and go back to bed, to rest from the exertion.

I keep my laptop by the bed and might spend an hour on it in the morning. I have a bed tray that angles so the keyboard is at the most comfortable angle for typing, while my arms are supported by the bedrest. I can check my email, do the banking, post to the blog, read other cancer survivor's stories, and talk to my family on MSN.

I find sitting up for long periods of time fatiguing so I often lie down and listen to books on audiotape, and sometimes fall asleep. I might listen to the same chapter three times because I keep falling asleep. Reading is difficult because I do not have the arm strength to hold a book for long, nor the concentration that reading sometimes requires.

If Barry is home and there are errands to be done I will sometimes go with him and just wait in the car while he goes into the stores. I have pillows to support my head and arms in the car. I don't have the stamina to walk around a store for more than a few minutes, but it's great to get out and see sunshine and experience fresh air, although living in Canada means it's too cold to spend much time outside.

But this week, although it is the week right after chemo, I am actually feeling quite well, relatively speaking, and am not as fatigued as last month. I am looking forward to all this being over and being able to live a normal life.

Chemo week, cycle three

On Monday I had my Rituxan infusion, and it went well. It's a long infusion, 3 hours, but the only side effects I had were from the Benadryl; sleepiness and dizziness.

Wednesday was New Year's Eve. We didn't spend it partying. I spent the morning at Roswell Park having Fludara dripped into my veins. Everything went well and I had no side effects other than being cold during the infusion. We went home and I had a long nap.

I went to bed at 10 pm on New Year's Eve and Barry stayed up to watch the New Year come in at Times Square.

Friday morning was more Fludara and still no side effects. I'm hoping that it means that I will have a good month with less arm pain in particular.

Happy New Year to everyone and I thank you all for your thoughts and prayers.