Laura Ingalls Wilder and Me, Part II: In Which I Gain My Bonnet and Sally Forth

Yep, I had a doctor's appointment. I dragged myself there. I had told my oncologist what Dr. Sarah Cannon Trial Guy had said right after he said it, and my doctor, who has the sunniest, most optimistic disposition the world has ever seen, had said "pfffft" to that guy and that we would find a trial and not to worry. I had believed him enough to not start my chemo again (because you have to wash all treatment drugs and whatnot from your system for 4 (or is it 6?) weeks before entering a trial), but obviously did not believe him enough to just keep on truckin'. But I should have! Of course I should have. Because he arrived with a smile and some paperwork. "Found a trial! You have a slot!" We had spoken of this trial before, and it sounded very promising, but there was a waitlist and so on and thus it was only on the very edge of my radar. But not his! He had put me on the waitlist a while ago, it turns out, and now a spot had opened up and it was mine. MINE!!!!!!! I signed the paperwork the very next day, on 2/21/17.  I was now bonnet worthy, my friends!  I was ready to wheel my covered wagon over to the frontier and start a-ridin' right away.

But, silly pioneer woman. You can't just head off into the great unknown without packing things (remember, only one pair of boots!). Well, when you're a medical pioneer, you don't have to pack anything, really, and you can have as many pairs of boots as you want - but you DO have to undergo various and sundry tests and procedures to make sure that you're a good fit for the trial. For this trial, I had 28 days from the day I signed the paperwork to get through all of the requirements and start treatment (so, until 3/21). If I failed to start treatment by then, I had to basically go to the back of the line and wait again. The requirements were thus:

• a million tubes of blood so they could find out basically everything about you that one can find out via blood work. In addition to all of the usual things I know about myself (platelets, white blood cells, glucose, creatinine, and so on), I also now know my cholesterol levels. I know my triglyceride levels. I know my PT/Inr. I know my calcium levels, potassium levels, magnesium levels, albumin levels. My fibrinogen level, my Free T3, my GGT level, my uric acid level, my lipase levels, and my lactate dehydrogenase levels, just to name a few. (Don't worry, I don't know what many of those are, either.) And you'll all be relieved to know that I was not pregnant. They took 31 tubes of blood.
• CT scans and MRIs of my chest, abdomen, and pelvis. I get these scans every 10 weeks or so anyway, but these were done so the study team would have a baseline (and happily, things looked stable, even after almost 8 weeks without treatment!) set of scans for compare purposes.
• An MRI of my brain. I am claustrophobic anyway, so the MRI's I get are already a big challenge, because you're trapped (as in, strapped down so you can't move) in a long narrow tube. Now I had to have my head in the middle of that thing and it had to be in a restraint. This was to make sure that I didn't have any mets (cancerous lesions) anywhere in my brain, because you can't have any and be part of the study. Mets to the brain terrify me. That's all I'm going to say about that. 
• A lung biopsy. they needed a sample of my largest lesion so they could study its genetic makeup, which they get by inserting a large, hollow needle into my tumor and then pulling out a sample. Sort of like making a well, (I guess?) to continue the prairie pioneer metaphor. Except they just wanted all the dirt.

They did the bloodwork right away (on 2/21) and everything looked fine...except, of course, my platelets. They had recovered from the 40K of the Sarah Cannon bloodwork fiasco and were hanging out around 64K. Good number for me, but not good enough for the study, which needs a minimum of 100K for you to start the trial. We decided to wait a week and check my platelets again. We also created a backup plan: if the platelets refused to rise, I would undergo yet another (third one in a year for the folks keeping score at home!) partial splenic embolization. 

I've written about this procedure in other posts, but if you don't want to get into all the details (and I wouldn't blame you), basically, an interventional radiologist slices into an artery down near your lady parts (your groin, okay? I just think lady parts is funnier) and send a catheter through the artery until it reaches your spleen. Then they push a serum full of microbeads, which I swear looks like unicorn tears, through the catheter and into the spleen. It's an art, not a science: they want to send in enough unicorn tears to disable part of the spleen, but not so much that the entire spleen is out of commission. The microbeads kill the part of the spleen that it fills up, and then the excess platelets that have been hanging out in there are forced back into circulation.  

If it works, it's wonderful! Platelet levels rise, and stay risen. (Like Jesus.) Excellent!!  Unfortunately, it's really an awful recovery, unique in its pain trajectory. As the spleen dies, the pain increases, and I'm not talking about an "ooh, that smarts!" kind of pain. I am talking about a pain that even with excellent pain management meds, it hurts to take a deep breath. It takes about 4 or 5 days for the spleen to start dying. And then that continues for a couple of days, and THEN the pain starts to recede and you realize that you might not have to hang out with your face stuck to a pillow all day long. So, not for the weak of heart. But I was game. At this point, I figured I would at least be prepared for whatever side effects arose. I kept all of my fingers and toes crossed, though, all the same.

Meanwhile, the study team also decided to do all of my scans on the same day - well, NIGHT, to be exact. The clock was ticking, of course.  They scooted me in the very next day. This made for a very long night of scans, made even longer by my anxiety over MRIs and fear of what they might find in my brain. Also, you're not allowed to eat or drink for 4 hours prior to an MRI. And of course, they started late. The CT was a breeze. The MRIs were tedious and scary. The brain MRI helmet at least had a little mirror in it so I could see my feet, the MRI room, and the window behind which the technicians were working. During a break, I waved at them with my feet. They humored me and wave back.  I noticed that one of the technicians, as he's giving me directions, had a very distinctive accent. "You're from Joliet!" I said, feeling as surprised as he looked. "Yeah!" I grew up in the next town over. We talked about home.  Everyone was efficient and kind, which is the norm down here in Radiology. I finally left around 11 pm. 

I had an appointment the next day to look at scan results. They were good! The existing spots were stable; there were no new areas of concern. My brain had a clean bill of health. Whew!  But the platelets. We were still waiting on the platelets. Plenty of time - 27 days to go. 

One week and a few days later (3/1 - 20 days left), I arrived for my appointment feeling...meaty. I had eaten lots of kale, stripped my diet of any food anyone ever mentioned anywhere about possibly having a negative effect on platelet production, taken all the vitamins I was allowed to take, and anything else that sounded like it would be helpful. They drew my blood. We waited, as usual, and time slowed to a crawl - again, as usual. Platelets came back. 64K, again. Remarkably consistent but NOT GOOD ENOUGH. 

So. We were down to our last trick: another fucking (excuse me) embolization. My medical team went to work trying to schedule it. Meanwhile, the only other thing left to do before treatment commenced was the lung biopsy. They scheduled for 3/13 - the earliest date available and pretty close to the wire (8 days). A date was found for the embolization: March 10th. 

Here I am in the PSE procedure room after sneaking my phone in:

pro tip: don't sneak your phone in. they get mad.

I'll save the gory details for my PSE series (!) but the procedure was successfully concluded. As they got ready to discharge me, one of my medical people cheerfully informed me that she'd see me at 7 am on Monday morning. What? Yes. They decided to check my platelet levels on Monday, first thing! If the platelets were over 100K, they would perform the lung biopsy and start treatment the following day. If I didn't make the 100K mark, I was out of the study. No pressure.

Luckily for me and anyone who had to spend any time with me then, I was more than a little chill thanks to pain medications and just couldn't worry all that much. We arrived at the hospital at 7:20 for my bloodwork. Waited, had my blood drawn, waited some more. Oh, the waiting!!

But guess what?? The bloodwork came back, and my platelets were 115K! I was in! I skipped off to get a lung biopsy, so excited that I didn't even panic when I coughed - drooled, really - bright red blood all over the head restraint (another one!) and the mirror beneath it that I was looking into (I was lying on my stomach) during the biopsy procedure. Apparently very common. Still, a little head's up would have been helpful. Then we headed home for a nice, long nap and I had my very first infusion the next day! I'll write all about that soon. Until then, stay cozy.