Pull Out A Cot

Last week I think it would have been easier to set up my sleeping bag and spend the night at Huntsman - we were there more than we were at home! Tuesday afternoon was the brain MRI that we waited so long to get approval on. It was later than our usual appointments - 5:00 - so Dean and Janessa came with me. It was pretty much business as usual. They got me right in and right out, probably because they were anxious to get home as well. It still took three pokes from the first technician, who then called for help from a second one, to get the IV put in. Number 2 tech had success on the first poke, thankfully. I listened to some very loud Top 40 tunes, but it was better than listening to the noisy machine. Three Katy Perry songs in a row! Nice! I always worry about what my brain is showing & doing during this test...have to keep thinking happy thoughts & strong brain waves with NO cancer in them! When I finished, I discovered Dean had been chatting with an older couple in the waiting room who had had to drive from a little town near Reno - about a 7 hr drive! Oh, how blessed we are to have a commute of mere minutes rather than hours!

Wednesday - went to see Dr. G to get results from MRI, but it turned into sooo much more. I have my own personal "assistant", Darren, who is jumping through hoops to get me into the new PD-1 trial, and he met Linds & I at the check-in desk first thing. I needed to have blood work done & he suggested that I have an IV put in, "just in case" I needed more blood work specific to the trial. Great idea to save my poor, overworked veins - and as it turned out, exactly what I needed. First of all, good news: no mets in the brain! HUGE sigh of relief. Not so good news: my lab results show that my hemostat numbers are down & have been declining for a while. Low red blood cells, low white blood cells, low hemoglobin, etc. Dr. G is concerned. It means I don't qualify for the trial until we can figure out the "why" and get the numbers up. It also means a simple fever could be "life-threatening". Now I'm concerned, too. It could be caused by a couple of things: best case scenario, nutrition; worst case, melanoma in the bone marrow. WHAT? Good grief! Since Dr. G is Mr. Thorough, he has already set up a bone marrow biopsy for Thursday, a simple procedure, he says, but it scares me. He has also put in an emergency order that I speak to a nutritionist TODAY (not a usual request, for sure). Obviously, I've lost a ton of weight (100 lbs in the past 2 yrs) & because of the Whipple, I haven't eaten well for the past 9 months. So, I liked this plan a lot. Before I could see the nutritionist, I had to have more blood work for the bone marrow biopsy (see how the IV came in handy right then?). Linds & I go to our favorite "check-in" gals to get everything ordered & they are amazed at the "new adventures" I'm having. Turns out that my wimpy little veins would have to give up another 15 vials of blood for testing! Oh my goodness! The usual amount is 2-3 vials, so I was wilting at the mere thought. Happily, due to the IV, those 15 vials were filled quickly & Linds and I were given food cards from Darren to grab some lunch in the Huntsman bistro on the 6th floor while we waited to talk to the dietician. I was so grateful for the info I got from her when we met. She asked me about my daily routine, which basically depended on whether or not I was dealing with a painful stomach & diarrhea that day. If so, I existed on crackers & water! She gave me examples of what would help & what would make the day worse, simple things like adding calories to what I was already eating: peanut butter or cheese on the crackers, no blueberries on my oatmeal (too much added fiber), more bananas, apples without skin, cottage cheese, veggie dip, smoothies, Greek yogurt, Boost protein drink, more lean red meat, etc. I could do that! And of course, she wanted me to cut down on the sweets I crave & instead, substitute one healthy snack per day. I could do that, too! I felt like I finally had some workable advice. It was very empowering, and as I write this post, a week later, I can honestly say that I have had a much better week, food-wise: less pain, less diarrhea, more energy, more appetite etc. Hooray! Just what I needed. What I didn't need, but what is fast becoming the norm, was another long day at Huntsman, which wore me out completely. I had planned a little get-together with two wonderful old friends later that afternoon & decided that I really wanted to see them and have the visit, but when one of them looked across the table at me and said I looked very tired, I knew I was done. Whew. Talk about info overload & blood work only a vampire would love...

 

Thursday - Linds & I were back again for the bone marrow biopsy. I had been given a prescription for Avidan?/Lorazipam (to relax me for the procedure), which also happened to be the drug I was given in the ER after complications with the Whipple, the drug that made me hallucinate & go completely crazy. Dr. G's nurse, Karen, looked it up online to make sure what drug I was given and couldn't believe what she found. The ER had given me 2mg of Avidan by IV, which was probably twice what I should have had, especially since I am such a "narcotic virgin" (Karen's words). No wonder I was nuts that night! She laughed & said I should only take half a pill, which would work just as well for me as a whole pill for someone else. Weird. As we were waiting for Dr. G in the procedure room, I asked Karen if this biopsy was going to involve a huge needle/turkey baster-type thingy that sucked out a ton of liquid bone marrow out of my back, "like on TV", and she just laughed. "I don't watch medical shows," she said, "because they're so far from the truth." Who knew that marrow is red, like blood, and that the "tool" used is a small "drill" that extracts a tiny worm-like sample of marrow? After Dr. G came in and put on his "Swedish" plastic scrubs (they were yellow & blue!), he had me lay on my tummy, where I was so relaxed, I felt I could have taken a little nap. He numbed a spot on the small of my back to the right of my spine; he explained that there are two "plates" there that are close to the surface of the skin and contain good amounts of marrow. Then he made a hole in the skin where he could insert the drill to get the biopsy. He was in a good, chatty mood, and that helped ease my mind. It didn't hurt - there was just a lot of pressure when the doctor pushed on the drill. Unfortunately, we found that I'm not only a hard "poke" for blood, but it took four tries (four holes) to get a good marrow sample. After the third try, Dr. G asked how I was doing & I said okay. Doc said, "Well, I don't believe you, so since I need to do another hole, I'm giving you some more numbing meds." Yeah, I was glad. I'm sure that last one would have hurt a bit without it. It proved to be the good sample needed & Dr. G was pleased. A bandage and a promise that we'd get the results Monday afternoon, and we were out of there.

Monday afternoon - Karen calls my cell phone while I'm sitting at the school waiting for Ness & asks if I'm in a place where I can talk. My heart sinks a bit. I've imagined all the worst things the biopsy could show: do I have leukemia? Something even more serious? It's scary. So when I hear her say that the results have come back completely clear and wonderful, I am nearly overcome. In Karen's words, they are absolutely "tickled" with the results. Me too. No melanoma in the blood marrow. Thank you, Lord Jesus. This is the best news.

More appointments upcoming in the next weeks. Blood tests have shown that I'm anemic and very low in iron, so now the plan is to work on that. There's always something. But as long as the good news keeps outweighing the bad, I'm grateful.
Enjoy the pictures (thanks, Linds). I find them interesting. I'm learning so much on this journey.