Ok, Well, I admit. I was pretty sure that the current batch of chemo was not being all that successful. The number of seizure effects and side effects I have been having made me concerned and I was completely prepared for a change in medication.
Apparently, though, the current approach is holding down the fort. All my tumors are either about the same size or slightly smaller. And, as an added bonus, I got the doctor (Smith) with the much better bedside manner who was willing to just sit with me and explain as best he could where all the cancer is and what is happening with it.
The improvement there was clearly pleasing my doctor. So, I feel pretty comfortable with it. He also promised that they would continue to be on the lookout for any Clinical Trials for which I would be suited. That made me feel more comfortable, too.
Other interesting bits:
- They will slightly reduce the chemo to help with some of the side effects, but since it is actually keeping things stable, they are less concerned about that than they otherwise might be.
- There are apparently some tiny bits of cancer in my lungs, but, again, since we are keeping things stable and because they are sooo small, no one seems overly concerned. I am not thrilled at all. But, it isn’t something I get to pick
- The cancer is pretty much alllll through my bones. He thinks it is in all my vertebrae, for instance. Which is off-putting. But, I guess it has largely been like that from the beginning. It is just that now it has been better explained to me. And, all the pain is largely controlled. And, if we believe the tests, the chemo is doing what it should be, knock huge wood (ummm maybe I could phrase that better? Nahhhh….)
- They will finally be giving me the bone strengthening medication on Friday- and they will schedule a non-urgent bone scan in the reasonably near future. That test looks like it will be a bit of a doozy (several hours waiting for radiation to work its way around my body while I wait at the hospital), but the info should be really useful- or at least pertinent to my interests.
- They are reducing my steroid dose and going to try to help get my legs recovered with some physical therapy. This is very good because rebuilding muscle mass will make it a lot easier to get on and off cars, buses, etc.
- They are putting me on a couple new meds to deal with some of the other side effects. Stuff for inflammation in my mouth. Some Imodium to help get some of the chemo symptoms under control. Some vitamin B6 to try to help with the Plantar Palmar
- They will be assigning me to some “regional nurses” who will decide how to deal with a nasty wound I have gotten at the …. well, at the top of my butt crack… not sure how to make that sound adorable. But the skin has split and apparently will need some special care to help it heal.
- Some other little tweaks I am forgetting about.
- So, basically, there will be many changes, but they aren’t the ones I was anticipating.
- Audric is sick…. He will probably be home tomorrow, but that sort of means I will be around a plague carrier all day….. With a compromised immune system I have to sort of avoid him. But, he is also my kiddo, so that is hard.
As for how I am actually DOING? Honestly, it is a rough week. Last time I was off my chemo I had such a terrific time with Audric and I had so much energy! This time I am really struggling. I think between the meds and the lack of rest time this last week, I just need more recovery than last time. But, it is a little discouraging because I had hoped I would be much more energetic and capable than I actually seem to be. On the other hand, if you consider it as a trade off in terms of having basically enough energy to hang with Raquel and Malia and then needing this week to recover, it is a choice I would have made with my eyes open. The issues largely come from mis-matched expectations, I think. As many such things do.
In any case, this is fast becoming an Non-Quicky Update.
All the *actual* changes. We will see what happens.