Life in the joint - my awesome weekend!

Still in the "joint" (hospital). Turns out this hospitalization for GVHD of the "gut" is no joke (despite my best efforts to keep things light hearted and make the best use of my time here at my "medical day spa" :).

Had an amazing weekend. First off, I was able to get my 6-month bone marrow biopsy with aspiration done with conscious sedation right here in my hospital room on Friday afternoon. They did everything here at my bedside! The NP who preformed the procedure was AMAZING (she apparently does most of the BMBXs for anyone who is inpt, which is why I had never had her do one for me before. I asked if she ever did them for outpatient patients (cuz I wanted to request her specifically again in the future and she said "not usually, but you can always ask and see what they can schedule). Lol. I will CERTAINLY do so when it comes time for my next one in January! While I will always "feel" it when they actually drill in and suck out the marrow and then take a chunk of bone for the biopsy, she was SUPER fast and got a good sample the very first attempt, so she is by far the "winner" in my book!!! She also kept me very calm and reassured the entire procedure which was a full time job in and of itself since I am so traumatized from my BMBXs at Kaiser earlier this yr! It was crazy at one point when everyone in the room realized we had lived in good oil' Ventura, CA at one point during HS/college. Both the NP and my nurse that day who did my IV drugs had gone to school @ UCSB and had been "lady gaucho" swimmers. We talked about all the swim meets I had attended as a club swimmer and HS/district meets that were held up at UCSB. Such a small world and worked wonders to keep me calm. As a result, I was SO much less sore/achy from the biopsy (probably because I was relaxed and didn't tense up). The results aren't back yet, but we are hoping for at least some preliminary results by the middle or end of next week. I am optimistic that everything is going to show that I am still cancer free and that Kyle's cells are doing their "thang" in there just as we have asked them too! :)

My team that did my BMBX sedation commented (just as they did with my endoscopy/colonoscopy the week before) that they were amazed that I took 3 times the amount of medication and that I was still "yapping away" and having a full remember able conversation with them throughout the procedure, and then came right back so quickly without showing any drowsiness or anything. She had never heard the "legend of red heads and anesthesia" but said she wanted to read about it more now because it seemed so strange to her. Shortly after my BMBX on Friday afternoon, I got a pleasant surprise visit from a good friend and her husband. This good friend of mine has undergone a BMT as well and has been such an amazing support and inspiration to me. It was great to see them and get her reassurance that this is just a little "speeding ticket" and that while I may be " sitting at the station, "processing" for a while longer than I want, at least they aren't arresting me and throwing me in "jail" ( the HEPA filtered ICU level BMT unit that is downstairs where only the sickest patients go and the length of stay is usually measured in MONTHS. So, I have that going for me! ;). Lol

On Saturday my doctor broke all the rules for me and granted me a 1-hr "off the oncology unit" pass so that I could go downstairs to a different floor and visit with Scotty!

John brought him to the hospital and we hung out in the totally empty Radiology Dept waiting room (they are closed on the weekends, so it was a perfect non-crowded place for us to be able to visit, play and spend an hr of quality family time! Scotty seems overwhelmed at first (hospitals can be overwhelming to adults, so I am sure he was just trying to take it all in, and he was a little timid when he saw that I was hooked up to the big IV pole...but he warmed up pretty quickly and I LOVED seeing him. We had a "floor picnic" right there in the Radiology Dept waiting room on a big blanket that John brought in with them. I got to see Scotty feed himself Cherrios (this was new for me because he wasn't even close to feeding himself anything when I admitted to the hospital 11 days ago! Now he shoved Cherrios I his mouth like he is a little squirrel gathering nuts for the winter! It is the cutest thing ever :).

I also got to help him practice walking, read his favorite book and then just chase after him and let him chase me as I wheeled my IV pole around with me. It was the best medicine that I could have received on Saturday and exactly what I needed to fill my heart/spirit and refocus my efforts on my physical recovery so that I can get back home ASAP. To top an already amazing Saturday morning visit with John and Scotty, I had another very good friend come visit me that afternoon. My heart is full of love and support and I can't thank everyone enough for their visits, emails, phone calls, texts, FB messages, etc! You guys are amazing and I can feel the love/support and continued prayers!

Here is the latest update medically:

My doc is making all sorts of positive changes effective Monday. I will switch over from IV form of steroids and immunosuppressant medications to pill form! This means that my levels are therapeutic now and he wants to see how I do once everything has to be absorbed and processed pill form through my intestines. He said with GVHD of the "gut" like I have, it's really important that we try this and then check levels again in a few days (probably Wed/Thursday) to make sure that my system can effectively absorb all the medications that I am taking. He also switched my blood thinning medication over from injection to pill form, so I won't have to do injectable blood thinners at home. The oral pills (Coumadin) require a LOT of monitoring on an outpatient basis but he is hopeful that it will be "short term" (4-6 months) which I can totally deal with even if it's a hassle in the meantime.

Even with the switching over to all oral medications, I am going to have to learn a TON about monitoring my blood glucose because the steroids have officially made me (temporarily) diabetic. Without insulin, they raise and keep my blood sugars in the high 170-220 range which is dangerous and needs to be corrected with sliding scale insulin to protect my body. So, I will be learning how to monitor that, figure out my "carbs" which will be super challenging since my GVHD diet is mostly white/refined carbs since they are they easiest thing for my "baby gut" to relearn how to absorb. Should be quite the adventure/education and gives me a whole new respect and level of understanding for people who struggle with diabetes all.the.time. Thankfully, my doc believes that this is likely just a temporary side effect from the mega dose of steroids, and like the blood thinning medication, I will have to monitor it super closely and learn how to manage it with sliding scale insulin injections and carb counting for the next several months but that it should resolve as we taper further down on the steroid dose in a few months. There is always the chance that this could be an uninvited long term side effect, but I am just taking it one step at a time and going from there. I have fain that it's just temporary and that by the time my BMT "re-birthday" comes around again in April next year, all of this will be a bad memory :)

If everything continues to go according to plan (and the continuously warn me that GVHD of the gut is so unpredictable) they still think that a discharge home at the end of this week is a possibility. Keep your fingers, toes, eyes, etc crossed for me that I continue to "sail" right through and I can hold them to it! :).

With the switch over to all oral medications, I am no longer hooked up to my IV pole for constant fluids and meds 24/7... I am "unplugged" for the first time in 12 days this morning and it feels SO good! :). I can actually get up and move around my hospital room without having to worry about yanking my IV or dragging the pole everywhere I want/need to go. I will get to do my walking and PT/OT exercises today without having to take my IV around with me which is super exciting (small victories, man!). LOL

That's it for now. Lots of good news and visits over the weekend. Please send up prayer and/or positive thoughts that my body continues to heal and show progress so the doctors are reassured that we are on track and feel comfortable with an end of the week discharge! I will have a Full-time/over-time job just keeping track of the 6 new meds they have added to my daily requirements, the 4-5x/day glucose monitoring and insulin injections, the intensive blood thinning medication monitoring (several times per week), as well as keeping all of my appointments at the clinic (probably 3x/week for the first month or so), and doing my daily home IV fluids and line care on my new PICC line. I am up for the challenge though and can't wait to get home (hopefully Friday) if nothing scary pops up and I can prove to my docs that I am steady and reliable and can manage this at home now :). Time to make lots of "checklists" ( and I am the queen of those as many of you know...LOL) so I can show them I am capable of monitoring everything! :)