November 21, 2009

I got good news this week from my doctor. I'm still in remission, which is a relief. I am waiting for my blood counts to rise from the radiation treatment, so I've been getting frequent red cell and platelet transfusions. Once my levels start holding their own, I'll be able to stop going in so often. Right now, I'm in 3 times a week, getting bloodwork and transfusions. Thank goodness for all the people that donate.

Maybe by the end of the Thanksgiving weekend I'll be getting better. Once this stage is over, I'll be visiting the doctor every two months. It'll feel like a vacation.

Everyone have a great Thanksgiving.

Update 11/1/09

This has been one of my tough weeks. While understanding all this treatment will have payoffs, it's getting to me a bit. My platelet count tanked this week. Normal people have 150,000 and up in their blood, mine went from 75,000 to 15,000 in about a week. Since platelets stop bleeding, it is necessary to replace them before there's a problem. I ended up having a platelet transfusion on Friday and may need more. I'll be tested again on Monday to see what's what with my counts. This was expected, but happened sooner than I thought. I certainly would have cut out more fabric if I knew - now I'm at a standstill. No cutting for a while. No sharp objects.

Many of you have asked what you can do for me. Donating platelets or other blood is certainly something that would be beneficial to not only me, but others at MDA that need it.

October 18, 2009

It's been about 2 1/2 weeks since I got my radiation. I really didn't expect it to be too tough, but I was wrong. The fatigue has really gotten to me. After months of not being able to sleep, that's about all I can do these days. I forced myself to get off the couch today and take a bike ride - 6 miles was all I could handle. Quite a difference from my pre-diagnosis days.

Blood counts are dropping rapidly, as expected. I can hardly wait till it hits bottom (not really). At that point, I won't be able to cut anything, ride my bike or even shave my legs for fear of bleeding. The roughest part so far was having to stay away from Quilt Festival this year because of the crowds. Boy, will I make up for it next year.

Glowing

I had my preliminary targeted radiation on Wednesday. It went well - unless I hear otherwise, we're good to go on the full dosage on the 30th. It makes you a little nervous when the nurse comes in with a lead vest and lead container with your "cocktail". I guess I'll be dangerous to pregnant women and children for a week after getting it. I'll be sleeping alone in the guest bedroom for a week. No one wants to be around me! Luckily, the nurses are pretty fabulous and joked around with me to help get me through it. I won't lie, I'm probably one of the bigger chickens around and this stuff freaks me out.

I'll hang out at the house and get my strength up for Wednesday, then full speed ahead. It will take pretty much through the end of the year before I am back on track with my blood counts, so it should be an interesting Thanksgiving. No turkey carving for me.

Next Phase

I'm on to my next phase of treatment, which means a type of radiation treatment. I will get a test dose tomorrow to see if it is going to all the right places, and if so, they will give me a full dosage next week. This radiation is targeted, and will follow a dose of a monoclonal antibody, which I've had with my chemo treatments. The radiation will follow this antibody directly to my b-cells, which is where I have problems. I will have about 3 months of anticipated problems with blood counts because the radiation will be destroying my b-cells in my bone marrow. The goal is to give me a longer remission period. I was tested today and my counts are all good to go, so onward with this phase.

R&R

I've been enjoying my time away from any treatment. We went to LA for my nephew's wedding and will go east to see grandkids, daughter, brothers and in-laws in a week. Then I'll do a weekend retreat to quilt. It's very liberating not to be tied to medications or treatments for a while. I'll be back at MD Anderson to do the radiation in late September, but until then, freedom. After that, I'll be restricted from traveling again probably until around Christmas.

I'm back biking regularly, which is great. I really missed it. I certainly am not back to pre-diagnosis distance, but doing well. I just wanted to update everyone since it has been a while since my last posting.

Success

I received my results from all the testing and I am in complete remission. The team at MD Anderson have done a fabulous job ridding my body of cancer - they are awesome.

I'll still have my maintenance drugs for the next year as well as the radiation treatment in late September. These should help keep me cancer free for a longer period of time. Lymphoma can be a bit pesky and return, so I will be retested every 4 months for two years and then that regimen will get reduced, but I will always have to be monitored.

My success has in no small part due to the support of all of my wonderful friends and family sending encouragement, offers of food, flowers and lots of spiritual support. Ted has been Mr. Wonderful, taking good care of me through all of this. You all have made a difference and helped me fight this disease. Thank you all for that.

With love and hope,
Marilyn