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

Testing Completed 7/23/09

After 11 hours at MDA, I finished my testing yesterday to check to see how my treatment is working. Boy, it is the best place to go for cancer, but they sure know how to check every part of your body, and that's not in a good way! I decided this time not to try to be tough, and got anesthetized for my bone marrow biopsy. What a difference - I woke up sore, but did not have to deal with the trauma of it all. If any of you ever have to do one - take the easy route.

I'll know what all the tests reveal next week and see where my treatment goes from there. If all is well, I'll continue my targeted monoclonal antibody therapy and do my targeted radioimmunotherapy (radiation) maybe in late September. These two drugs work together and just go after my B cells in my blood, which are causing me all my problems. It should help keep the disease in remission.

Keep your fingers and toes crossed that I have good news next week. I'll let y'all know.

June 26, 2009 Update

Well, today is my last chemotherapy treatment. I am very happy to be able to say that. Will have some recovery time, then get restaged in a few weeks to ensure the lymphoma is under control. After that, I'll get a couple of months off before I continue my monocolonal antibody treatment and get my one time targeted radiation therapy sometime late in September. Right now, the doctor is very pleased with my progress and I feel extremely positive about how things are going.

Because I'll have 60 days with no treatments and no meds, I'll be able to travel and see the family beginning in August. I have a trip to LA for my nephew Michah's wedding and also want to go east and see grandkids, daughter and brothers. After September, I'll be grounded again for a while, so I have to make the most of my time.