It's starting to sink in

With the diagnostics completed, I now know that I have Stage IIIA Non-Hodgkin's Large B-Cell Lymphoma. Of course, I’m still getting used to the news.

Sometimes I find myself just kind of “watching” as if the process is happening to someone else. For example, I’ll think about how amazing it is that scientists have developed all of these sophisticated nuclear imaging techniques to see how things are working on the inside of our bodies without having to cut us open to take a look.

Then I jump back into the personal sphere and realize that because of these scientists, I know where the cancer is in me. The PET Scan makes all the cancer cells "light-up" so that you can see the location of the disease. In my case the lymphoma is both above and below the diaphragm. The PET Scan will be a helpful test to repeat at some point later in my treatment to see how things are going.

Thursday I met with Dr. Friedberg and the first thing I noticed was that he had the permission slip for the clinical trail on the top of my file. I had a moment of panic thinking that it must mean I had Stage IV disease—somehow I had gotten confused and thought you had to be at Stage IV to qualify for the study. He asked me how I was doing and I said, "Maybe not that great given that those papers are on top of the file.” He said, “Let’s slow down and we’ll review everything.”

There was actually very good news to report. My heart test came out perfectly. I also had no cancer in my bone marrow. My LDH blood test is higher than normal—but only moderately so—which is one indicator of disease (1 point). There was evidence of the cancer both above and below my diaphragm (1 point). That means I have only two of the 5 possible points that are cause of concern in determining the prognosis of the disease. I luck out because I haven’t hit the big 60 YET! I also didn’t have any other symptoms—like night sweating or unexplained weight loss. All the pounds that have left this body were hard earned! Finally my performance status is excellent—or at least normal for me ☺.

I admit that I was really anxious about the staging. I knew it was out of my control, but I was still dreading the report. Dr. Friedberg explained that I have Stage III disease and that is considered advanced and qualifies me for the clinical trial which will be the same exact treatment of eight courses of chemotherapy—administered every three weeks, followed by another drug called Bexxar® which is a form of radioimmunotherapy. Now that I realize I had a misunderstanding about qualifying, I’m actually relieved that I’ll be able to participate because I think it will really boost my chances for a full cure.

If you want to know more about Staging you can check out this web site:

http://www.leukemia-lymphoma.org/attachments/National/br_1161891669.pdf

So after talking with Dr. Friedberg, my nurse, Lynn prepped me for the chemotherapy I was going to start. I’m getting the R-CHOP protocol. I go to the Wilmot Center for one day every three weeks and get four of the drugs infused through an IV—Rituximab, cyclophosphamide, hydroxydaunomycin, Oncovin®(vincristine). I then take five days of prednisone pills. Lynn described the possible side effects of the chemotherapy. We then had a LONG talk about POOP! Yes, one of the things that is really important is not to get constipated from the treatment. So I’ll be paying a lot more attention to that particular body function!

The actually infusion went very well. I went into a room and got to pick my chair. 
A treatment nurse, Chris, hooked up my IV—ouch!  They slowly start adding the Rituximab in the IV. Fortunately, I tolerated it very well and didn’t experience any of the possible side effects. It takes about five hours to infuse this drug the first time—they do it really slowly in case you have a reaction.

Julie was with me most of the day—such a blessing to have her constant support. We had brought a nice lunch. I was really glad we had brought our own when I saw the options on the lunch cart they rolled by.

I had some nice visitors--Jessica Spector was in to meet with her doctor and stopped by with her Mom, Paula Brown.  Dr. LaLa stopped by to entertain me too!

After the Rituximab was finished, they slowly pushed syringes of two other drugs and hung a third on the pole of the IV. At almost 7:00 p.m. I got my “get out of jail” card and got to go home.

All in all it wasn’t too bad. Getting home I had a slight headache. I ate dinner and took the required medicines. I had a pretty rough night—hard to sleep. My body felt like it was buzzing. I finally took some meds to help with nausea and anxiety and got through the night.

The rest of the weekend was pretty good. One of the medicines seems to kick my ass into high gear. At one point I was dancing a jig in the kitchen before I harnessed the Prednisone induced energy and went for a long walk up to Cobb’s Hill and around the reservoir. It was a really beautiful weekend and I'm appreciative of the beautiful weather, the coming of Spring, and all the blessings--in spite of this crappy lymphoma.

I balanced the weekend between being busy attending a bridal shower, Passover Seder, and dinner with the Pelz family and taking some good rest periods. There is a certain amount of physical discomfort, but so far it’s been manageable.

I’m trying to focus on not getting too far ahead of myself. The emotions seem to take over when I think about the next six or seven months--it just feels overwhelming. When that anxiety is raging, I focus on just breathing in and breathing out. I’m working to stay in the moment.