I swear, I feel the same way almost every time I sit down to write a blog. Where to begin? How to explain? Like, does EVERY SINGLE ONE of my posts start something like that? They do. I see them. I write them.
But we must get started somewhere. So here goes! I am going to do my best to be honest and transparent as I write this.
Current status: Ugh. I wish I could write something that didn’t sound like complaining. But, honest and transparent, here we go. So I’ve been on “typical” colon cancer chemo since March. FOLFOX plus Avastin. Initially, tumor markers went down and my scan showed shrinkage, which was great. But my scan last week showed progression in my lungs. I assumed and expected a “progression” scan because the tumor markers have been climbing again, and they have been pretty reliable for the last 4.something years. The scan, otherwise, was stable (which is GOOD. So, even though tumors in lungs showed growth, nothing else did). Now. Being on this chemo has not been fun. It has been hard to know if I feel crappy because of 1) chemo; 2) cancer; 3) both. The answer is probably “both”. I don’t want that to be the answer. I wish I could say that the chemo is destroying me (which it is), but it is definitely NOT the whole picture. Why can I assume this (I mean, besides the scans and tumor marker tests)? Because I don’t bounce back anymore. I used to have “crappy days” and “good days” and now I mostly just have crappy days. I have pain that is not well-controlled, my fatigue is so severe that I fall asleep at the kitchen table during a conversation, I’ve lost weight, I’m weak, etc. The biggest issue is the pain – it is a constant ache under my left ribs. Sometimes it travels to my lower back. It is making. me. crazy. I have pain meds which I take; they help somewhat, but they mostly make me
And they cause me to
lose my train of thought
not be organized
And they still don’t take away the pain. So there are moments…MANY moments…that I am in too much pain to
Let’s just leave it at that. How, how, HOW in the world am I supposed to do much of anything….ANYTHING…if I struggle to stand, walk, and sleep? Oh, and I’m using medical marijuana, too, since January. Lots of it. And that just adds to the drowsiness and inability to function.
I had a pain procedure last week that did nothing. I hoped it would do SOMETHING.
But that brings us to the current plan.
Remember last year when I was going to see Dr. Kasi in Florida and he had my liver biopsied? At the time, the report said most tissue collected was necrotic (dead tissue), so honest to goodness I kind of wrote it off and assumed that nothing would come of it. Well, let me tell you a little about timing. I reached out to Dr. Kasi about two weeks ago (who is now in Iowa; I have NOT been there to see him). Just to update him, keep him in the loop, and to ask him a couple of treatment questions. He got back to me within a day with questions of his own, and a sweet little email that said something along the lines of, “let’s check with the lab to see if we were able to grow your tumor.”
I had been praying to God for guidance; to help make decisions; to lead me to the best decision. Finally last week I said, “God, I am so tired. Can you please just give me an answer? I can’t even think to process all of this information.”
And Dr. Kasi contacted me the next day (HE contacted ME). Indeed they have been able to grow and test my tumors in the lab! The results of this information have given us some treatment options that were not on the table before. I mean, these treatments were not even in the same ROOM, let alone table. That is, Dr. Kasi has data that shows that MY tumor cells are sensitive to certain chemos (and other drugs or compounds), at least in the lab. This is pretty huge, because 1) options. 2) gives us a place to start, since it is time for a treatment change. 3) data. Doctors love actual data. 4) options, you guys!!!! The drugs that “work” seem to fall into three categories/buckets. Our plan is to start with one, see how it goes. One of the categories includes a pretty common chemo called doxil. We are going to try this on Monday unless something changes between now and then. Doxil might be a scary chemo…we already have a lower dose planned, and I am armed with a couple of strategies to help minimize side effects. I will likely lose my hair. Other side effects – nausea, vomiting, fatigue, blood counts dropping – the usual culprits. Also a chance of hand/foot syndrome and mouth sores. Other side effects or issues could happen as always, but my docs and nurses are great and keep an extra eye out any time there is a change.
So that is that. In the meantime, I have been trying my very darndest best to distract myself and keep myself “busy” so I don’t think so much about my discomfort. First of all, we celebrated Alexander’s 5th birthday last week. It blows my mind that we have a 5-year-old. (And that, my friends, is an entire separate blog post.) We’ve been trying to do family things this summer – friends have been great with visiting, or inviting us to swim, play, boat…some of these things I can do with Tim’s (and friends’) help, despite my pain and limited energy. Tim plans “date nights” that consist of escape rooms and sitting down to eat or enjoy some ice cream – these are a great distraction, too. Honestly, I just struggle so very much because I feel like I can’t do things. I’m trying. But you know me, people. I have never been sedentary. This “lifestyle” is not mine. “Doing nothing” is the hardest thing I’ve ever ever ever had to do.
So enjoy some of these “normal” photos, because the “sedentary” ones of me sleeping for hours on the couch while everyone else does life are not likely to be posted. Or taken, for that matter. And pray hard about the success of my upcoming treatment. Please.