Here I am in El Paso again. It is hot! 102 the last two days. But they say it is a "dry heat." Well, so is a campfire.
Monday, before I left to fly up here, I saw my Dr. again and had more blood work. I won't post that here other than my platelets came up some and my RBC went down some. Other than that, nothing much changed. However, after seeing him I now have two more chemo rounds scheduled. Since I am in El Paso all week, the next round will be next Monday. Then again on July 5th. I will also extend the Prednisone for an extra five days so I can decrease it slowly rather than the sudden stop.
How did I happen to agree to this? Well, as you know, he wants a better response but I have been happy with the good partial response. However, a couple of weeks ago he had ordered another CT scan of my chest, abdomen and groin. He left out the neck this time. At first I hesitated to do this because of the high dose of radiation that it takes to do this test -- equivalent to 400 chest X-rays! But, since my neck lymph nodes went down after the first chemo round, I thought this would show him I had a better response than what he thought. Well, I was wrong, sigh. Although all the nodes had decreased since before we started chemo, they only went down to half or some to 1/3 of the original size. There are several that are close to 2 cm x 3 cm. And I still have quite a few in the lungs. So, because of the fact that he said he was more pleased than he had been, that he didn't suggest FCR (the one I don't want to do yet), and the nodes that haven't gone away, I agreed to do two more rounds of what I have already had six rounds. He said he wants a more complete response. He will then do a bone marrow biopsy in August.
Well, the fact that we are doing more chemo made Cheryl happy because she really wants me in a remission. As my daughter, Cheri, said, "when Mom is happy, everybody is happy." I was absolutely fine with the decision in his office and on the drive back to work. But then some disappointment set in. It was nice not having to do chemo for awhile. At least I know I tolerate this well, so two more rounds won't be bad. I just know I will have a couple of more times with my steroid friends. More sleepless nights, more fatigue and more moodiness. Watch out!
Also, in Monday's mail I got a letter from Dr. Weirda's office at MD Anderson. He is the CLL expert I saw last year for my second opinion. They automatically made a follow up appointment for July 12th. I will have blood work there in the morning and then see him in the afternoon. That is good timing because I will get his opinion on what I should be doing now after these two extra rounds. However, I will still be on the Prednisone and that will throw the blood work off some. It will make some numbers look better and some worse.
I noticed on the CT Scan report when I was reading it here in the hotel, that as noted last time, I have coronary artery calcification. My oncologist never mentioned this and I don't know how significant this is. I will need to ask when I get back.
I will also be making an appointment with a dermatologist. Skin cancer is a danger with this leukemia, particularly after chemo. Although not as much danger as with FCR. I have a spot on my arm that has appeared in the last couple of weeks. When I asked him about it, he kind of pooh-poohed it before he looked at it. When he was examining me, he did look at it and said a dermatologist could cut it out. Since my dad had lots of skin cancers with this leukemia, I will definitely go.
My energy level has been on a roller coaster ride. Last Friday I felt great all day, including after driving to Ft. Hood after work to get Rx refills, a haircut and some grocery shopping. I thought, FINALLY. Then I slept a lot all weekend. Yesterday it was pretty good again and then today a little on the down side. Oh well, it should be pretty good just in time to start over on Monday. I came back to the hotel tonight and slept for three hours. Just went and ate and about to go back to bed for the night. I never sleep that well the first couple of nights in a hotel.
Pray that these next two rounds will give me a more complete response and I can knock those nasty cancer cells running all around my body into submission.
6 comments:
John: We are with Cheryl! We want a complete remission. We do pray daily for you to experience a healing that will surprise and confound the doctors, and that will bring joy to the circle of family and friends that love you. Take care! We love you
Hey...We know this is somewhat disapointing for you but we are totally certain it's going to be fine. Don't need to remind you how great Dad did for so long and he wasn't nearly as healthy, as informed, or as young as you are! We know we don't talk as regularly as we should but you are never far from our thoughts. Really looking forward to seeing you at the wedding in July...don't wait up for us unless you can't sleep, we won't be getting in until quite late Friday night. love you.
p.s. Don't forget during all this to do something fun for yourself...enough with work and the treatments already - let what's left of your hair down and have a good time! It's not the easiest thing to do sometimes but well worth it to just forget about it all for a bit!!!!
On the CT scans...I refused them and said I would only do MRIs. That was fine with the oncologist and the results are as good as from a CT scan.
I am going to refuse all CT scans unless they can convince me that my life will end, and only a CT scan can give results significantly better than an MRI or ultrasound that will save my life.
I had a CT scan upon diagnosis, and I regret that now. However, I did not know any better. Turns out, even very famous CLL docs (you would instantly know the name) are unaware of the amount of radiation that CT scans involve. This one very famous CLL doc said a CT scan was equivalent of a round-trip flight from Los Angeles to New York.
Wrong!
It's the equivalent of 333 round trip flights! And that's not spread over years, but in a few short minutes.
Radiation ups the risk of cancer. I avoid any radiation that I possibly can.
Granted, a CT scan may be the only thing that will save your life, and then it is imperative that you have one.
But to track results of therapy, I'd definitely go with an MRI.
The 400 chest X-rays is a bit misleading. A better measure would be it is equivalent to 5 abdominal X-rays. The air in the lungs make the amount of radiation absorbed by the body really quite small.
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