Monday, April 19, 2010

"We need to get back out in front of the disease."

Boy, it's been awhile and there is a lot to tell about. It seems that the post-transplant road is not always smooth and makes many a twist and turn.

You'll remember that around 100 days post-transplant Clyde was living apparently cancer-free. We were all ecstatic and loving that Clyde was feeling well. She was going to work and going for walks. Life, it seemed, was returning to normal. Clyde was coaching me on how to live with the situation as it was. "You can't worry about the other shoe dropping," she would tell me. I was trying but not buying in completely.

A few weeks later, Clyde noticed a swollen lymph node in her groin and one in her neck. Swollen nodes are a classic symptom of lymphoma and other diseases. She tried not to panic but brought it to the attention of her transplant doctor at her next appointment.

Dr. Longo didn't freak out at what he observed during the visit. He reassured Clyde that there had been some latent lymphoma cells in her system that the transplant hadn't yet eliminated. In his words it was time to "unleash the beast" that is her new immune system. He took her off of tacrilimus, the immune suppressing drug, and cut her prednisone prescription way down. This was designed to ramp up the anti-cancer activity in her body.

A couple of weeks passed and though the swelling in her affected lymph nodes was reduced, Wally, as Clyde calls him (not to his face), was not satisfied. He ordered another full-body CAT scan.

After the scan was completed it was apparent that Cylde's spleen was quite enlarged. The spleen is, in effect, your largest lymph node. From the pictures, the medical team could see that something, likely lymphoma, was collecting in hers. Another course of action must be taken.

The next step in eliminating Clyde's lymphoma was to infuse her with more cells from me.

We weren't surprised by this. On the day in late September that I went for my lab work with Jan, she informed me of the possibility that one day I would be called back to Madison to deliver more cells. Dr. Hamati confirmed that on the day that Clyde got the t-cells. It turns out that close to 50% of t-cell transplant recipients go through this stage as well. There was nothing to be concerned about. It's routine.

All Clyde could do was wait. Dr. Longo put her on a cycle of Rituxin (a drug that targets only cancer cells) that would last four weeks. At that point I would swoop in, drop off some white blood cells and we'd all see what happened.

We don't know why but two things happened during this period. One, Clyde lost all energy. She would have to lay down for a while after taking a shower. She could do nothing which is very hard on your mental state. Not only had she been dealt a major set-back, she was bored out of her mind.

The second change was that she couldn't seem to produce or hold onto any red blood cells. Every week she would be transfused with between two and four units of red blood. It was an agonizing cycle with no good explaination or end in sight. It has been a grueling few weeks.

While Clyde's energy level continued to deteriorate, I was making travel plans for Madison. I made plans to fly home on the 1st of April and home on the 4th. As it turns out, I had the dates wrong. The hospital couldn't do the procedure then. No problem, I'll make a change. I was sure that when I explained the situation to the good people at Frontier Airlines, they would wave the change fee. It's interesting that as the airline industry flails, they counter it by making the experience of doing business with them as bad as possible. Their response, "NO!"

I arrived at the hospital on the morning of the 9th. The procedure was exactly the same as when the t-cells were harvested but without the Neupogen to promote white blood cell growth in my body. The target this time around was mature lymphocytes, the cells that fight disease and infection. I was connected to the apheresis machine by 9a and the process was over before 1p. Nothing to it.

Samples of my blood were sent to the lab to confirm that I do not have hepatitus or HIV. This gave Clyde a few days to recover a bit from the Rituxin. On Friday the 16th, she was infused with 54ml of the harvested cells. She'll receive another dose in a month or so and maybe a third dose a month after that. We'll wait about ten days to see if there is any effect from the first dose. Neither Clyde or I know what the signs will be but it ten days we'll see them.

The first good news in weeks was delivered that morning as well. For the first time in ages, Clyde did not "need" a transfusion. Her red blood cell levels were within the acceptable range. She was given a choice to get some cells or not. She took them.

Clyde has her first doctors' appointment since the treatment tomorrow. I don't know what she'll learn about the activity of the new cells but she will get news on her RBC levels. I'll let you know what she learns.

In a way it feels like we've started over. Any positive vibe you can send out into the universe will be greatly appreciated.

Be well.

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