Dreading the day ahead...

I hope I am wrong. But I have a really bad feeling about today. Yesterday she was very unstable, the only time she walked on her own was yesterday morning as we entered the hospital to check in, and she got very unstable and had to sit down and from then on, for the rest of the day she was in a wheelchair. When we got home in the afternoon, she was able to walk from the car up to the living room with my assistance, but then her legs started spasming and gave out and I had to carry her to her chair in the family room. She spent the entire afternoon and evening there, napping, reading, eating and chatting (not needing to use the bathroom). When it was time for bed, she tried walking to the bathroom, but the same thing happened. I finally got her in bed, and she is sleeping soundly. But throughout the night, her legs have continued to spasm, although not as frequently as when she had weight on them.

So I am poised to call the on-call oncologist this morning (Kaplan is out of town). We will test her legs when she gets out of bed (with my assistance). If she has any difficulty, I'm calling. I don't know if it means a run to emergency, or just check in to the hospital. Or wait until Monday. What should happen is a scan of her spine. I suspect tumor involvement impacting her leg function. It would be consistent with the pain she is experiencing (which is now masked by the medication). It would also be consistent with her prior spinal tumors. Hard to believe it is medication related. Whether it is locally recurrent and can't be treated again (her spine from T-11 to L-4 had tomotherapy radiation) or in another section of the spine which can be treated is the question. There are only two treatments - chemotherapy and radiation. In any event, since the chemotherapy is already happening, radiation wouldn't start for a while and takes even longer to have an effect. So if it is cancer which is causing the instability and loss of leg function, it means she will be in a wheelchair for a while, if not forever. A dramatic and ugly turn of events. Emotionally and physically.

Thus my dread.

A Fork in the Road Day

We meet with Dr Kaplan at 9:20am. First she has her regular blood draw. Based on the results, we go in one of two directions. If her blood counts are normal she will likely start chemotherapy - maybe today or maybe tomorrow. It is the only thing she has left to try that might slow or stop the cancer - she knows it is a slim chance, but at least it is something. If her blood counts are low, it means she can't do the chemo. That means there is no chance of slowing or stopping the cancer and it is just a question of "if, not when".  That is a hard message to hear. Moreover it means that something is going on to cause those low blood counts, something not good. If blood counts are low, the explanation could be the cancer is in her liver or bone marrow. Whatever it is, it means the process is accelerating. Again, not a good message to hear. So it's likely going to be an emotional morning. We also have all the other issues to address which are not about systemic treatment - but tumor management. And of course the looming brain MRI next week.

It definitely is a mixed bag to have days like this. Uncertainty is unsettling, and getting the information allows you to understand where you are and adjust and plan accordingly, instead of speculating and dealing with a wide range of scenarios. But if the information is not good, or closes out desirable options (kind of ironic that poisoning your body with chemicals would be considered a good option) it sends you down a path you'd rather not take - and you have to deal with the negative consequences.

Post Results Day Paralysis

It is a fantastically beautiful day in Seattle today. I was able to sneak out and get a one and 1/2 hour ride in this morning while the boys were both here with Meagan - so got the endorphins going and the scenery on my Lake Washington ride loop is pretty incredible - both volcanoes out in full glory (Mt. Rainier, Mt. Baker) and the lake was calm and blue. So I should be feeling pretty good and motivated and able to tackle a few things on the chore list. But I find myself paralyzed by the opportunity. I feel like doing nothing. Not even reading. This is not the first time I've felt this way. It comes with the territory of the build up to the scan results and the figuring out of the plan. It kind of feels like when I have finished some epic 6-10 hour bike ride, when you are all cleaned up, but have nothing in the tank and just want to sit and stare at the wall. I'm ok with this. I don't feel guilty (like I might have in the past). It's just an interesting phenomenon  - one I accept - that is probably pretty common amongst caregivers. So I think I will go outside and watch the birds.

The one thing I did do this morning besides ride, was send an inquiry via email to Dr. Kaplan about Meagan's prescription for the chemotherapy, Temodar. It's clearly not working after three months, so I asked him about stopping or changing. He got back to me and said to stop it, and that after her Gamma knife treatment next week, when we see him on Oct. 4th, that he'd switch her to a different chemo - probably Abraxane. It has shown some promise with melanoma even though developed for breast cancer. It appears to be given by IV infusion every 2-3 weeks. But yes, it does have side effects, including hair loss between days 14-21. I told Meagan, and fortunately the fireworks weren't too severe. It's worth trying, and her hair is short and she's half bald in the back anyway, so what the heck. Another indignity.