Closing one chapter and starting a new one

So much has happened since my last post that I'm going to do two posts in one. The first part will cover everything since the last post and a conclusion to Chapter 1 of this crazy journey. The second part will introduce LIving La Vida Glioma Chapter 2.

Conclusion of Chapter 1:

Last I wrote, we were going to MDA every other day (or so it seems) to get my blood work checked. Lois and I ended up staying the course and then Hurricane Harvey hit Corpus. Houston flooded like nothing I've ever seen. Luckily, Lois and I were both in high spots and didn't flood. We were also well prepared with plenty of necessary supplies in case water or power went out (which it didn't). We were both stuck in our houses for several days, watching live news of people being rescued, hearing the rescue helicopters overhead, and wishing we could do something to help. We both had a pretty good dose of survivor's guilt and had to counsel one another through it. Everyone forbid me from doing anything having to do with flooding because my immune system was questionable. After all this expensive cancer treatment it would suck to die of pneumonia, so I complied. I just sat there, helpless to do much. I walked around the neighborhood some and then Lois and I tried to drop supplies at the GRB shelter but couldn't get through the traffic. I learned some things about hurricanes. 1) Being on the "dirty side of the storm" is bad. It means you get a lot of rain. 2) Filling up your bathtub with water is so you can flush the toilet if the water goes. I never understood why they said that, but now I know. Luckily I didn't have this issue. 3) The people of Houston are Humans first, Houstonians second, Texans third. In the middle of chaos, in the most diverse city in America, people are people and they all care about one another. 4) Sitting in your house for four days makes you forget what day it is.

The hospitals took on water, even MD Anderson, and everything was closed for quite a while. Lois and I walked over to MDA one day and talked our way past security to check things out. It looked like they got about 6 inches on the first floor. The week after the storms I got a call asking me to come in to a special clinic on a Thursday for "urgent patients." I felt compelled to ask, "Am I considered urgent?" The nurse said that anyone waiting for treatment was considered urgent so I should come in (remember, I'd been on hold for chemo for almost a month). Lois and I went in the next day for a blood draw and the special clinic. We were told that my numbers not only had not recovered, but were still decreasing. My white blood cell counts never recovered from the one dose of chemo. Truth is, the standard of care that I was on for a year (Temazolomide) did a number on my immune system and we already knew that. Since this drug trial was known to be successful with my type of tumor, we all thought it was worth a try. Unfortunately, one dose was all my body could handle.   Therefore, I had to stop the trial. I will never be able to take this type of chemo again, but I'm not sure that's such a bad thing. Hard to say, really.

My oncologist told us we were switching the focus to repairing the damaged immune system. The following day they gave me a strong antibiotic (in case I already had a low level infection), put me on quarantine notice, gave strict instructions on hygiene, and put me on a medicine for five days called Neupogen (A.K.A. Devil juice). Neupogen is a drug that builds up bone marrow so that your body will make white blood cells. The nurse gave me the first shot in my belly and showed me how so that I could then give myself shots for the following four days. I thought that giving myself shots would be horrendous and it was, but it was NOTHING compared to the side effects of this drug. I got the first shot at around 11 AM. I started getting achy afterward but both the nurse and the pharmacist made the statement, "Some people have joint or bone discomfort with this so just take tylenol." I'm a little resentful by how much they understated that. By bedtime my entire body was aching. It got stronger and stronger, every bone in my body throbbed with every heartbeat. It came in waves, like contractions and also got closer and closer together like contractions. Jason happened to be there and we were up for much of the night. I told him it felt a lot like when I was in labor with Aidan (without the feeling of a bowling ball coming out of the vagina). He said it seemed similar to him as well, "except you are yelling now and you were yelling then, but now you are not yelling at ME!" Touche. By day 2 or 3 I was able to get a handle on the pain with the tylenol but there was still some residual soreness. Add in the stomach issues with a strong antibiotic and it's a bad combination. Just say no to drugs! Good news is that my immune system did recover and I am finally able to go out in public, eat salad and berries, and interact with humans and animals. I'm hoping this isn't a temporary effect of the drugs because if it is, I may be looking at more devil juice. 

Chapter 2: The Journey Continues

So that all happened in the first week of September. Fast forward to yesterday, September 11. Jason came to Houston on Sunday (shout out to Steve for flying him in on short notice) because I had a 6 AM MRI on Monday morning, followed by an oncology appointment about which I'd been told that we would be "discussing current or future treatment options, depending on the results of the scan." We went in for the MRI bright and early. (Side note, the tech said that the MRI center did flood a little but they didn't lose any machines. Who builds an MRI center right next to the bayou? MD Anderson, that's who!) Anyway, we left there and went to the blood lab because I can't even step foot into MD Anderson without someone wanting to stick me and draw some blood. They should just station the phlebotomists in the entryway to the hospital. We saw the oncology team after the reports (results) of the MRI and blood work were both in his hands. The good news is that my blood numbers are good and we'll just keep watching them. And then we discussed further treatment...

If you've been reading the blog you may know that since my surgery in February, 2016 there has been a little spot that no one quite knows what to make of. The assumption with GBM is that there is no remission, that there are little grains of cells in there somewhere, that it always comes back (it usually does in most patients), and that it grows extremely fast. So my little spot did nothing for a very long time. Then, a few months ago, you might remember that I was told it grew about 1 mm. That's when they decided to put me on the clinical trial "just in case." This time Dr. No Naps seemed somewhat puzzled by this little nub. It seems to have grown all of 2 mm in a year or more. If it were tumor, we'd expect it to grow big and fast but it hasn't. It appears to be growing (minimally) into the empty cavity but they also assume that it could be growing the other direction too. If they could get a piece of it, they could biopsy it and see what it is. If it's tumor, they can analyze it and see if it has any markers that they could use targeted treatment on. Often when GBMs grow back, they come back with different genetic mutations than the orginal tumor had. So if they were able to analyze this, they might be able to see if I'm eligible for other experimental treatments. So the options are: 1) do nothing, watch it, and see if it starts growing fast 2) do a biopsy where they drill a little hole in the skull and go in with a needle and get a little piece of it 3) talk to the surgeon to see if thinks he could go in and just pluck it out, getting the tissue as well as the biopsy. Given that's it's tiny (the size of a small pea), Dr. No Naps wasn't sure if the surgeon would do it but he said he'd talk to him if I thought that might be an option. I agreed and went on my way.

It was only about 20 minutes later that the phone rang. When she said who she was Jason and I looked at one another as if to say, "We know what this means!" It was the surgical nurse and she said, "Dr. Sawaya has seen your scan and he'd like to get that nodule next Wednesday, September 20. Does that fit your social schedule?" My reply? "Well, who could say no to Dr. Sawaya?!" So, ladies and gents, this should be a simple procedure. I will know more next Monday when I see the surgeon, but the nodule is on the original tumor bed and I'm sure they will go in the same way they went in before. I do have some basic questions about whether there are more risks in a second procedure, etc., but those are more just for my own sense of curiosity. I know people with GBM who have had 7 or 8 craniotomies and are living 18 or 19 years after initial diagnosis. When I started writing on this blog right after the first surgery, I said there would probably be more surgeries and that I would show up every day and do whatever needed to be done. I meant it then and I mean it now. This is where we are now. This is what has to be done. At least this time, going in, I know exactly what to expect. Is it weird that I'm more concerned about getting keto food in the hospital than the actual surgery?