When the rubber meets the road

 Sorry to have missed 2 days! I have been making the mistake of waiting til the evening to write. I can not explain the sensation of almost panic when I am doing anything - brushing my teeth, for example. I have to lay down.  We went in for the three times a week clinic visit yesterday. The NP suggested I take Zophran scheduled, every 8 hours and Zyprexa at night to help with the nausea. I'm committed to that until we go back tomorrow. I have probably not taken enough of these meds on top of the others to really see them work.  I called the BMT line of APPs (Advanced Patient Providers) last night. My left shoulder hurt more and more and I wasn't sure about taking Tylenol or Advil (they don't want you to mask fever which is very serious right now), or they gave me Oxycontin, which I didn't know if it is safe with Zyprexa. They made sure it did't sound like a heart attack, told me to take the prescribed amounts of all 3 and to go to the ER and call them if that didn...

 Hi There out there in the world. I got out for a walk (in the wheelchair) with my sister and sweetheart. The sun felt so good but some of the meds I am on make me burn easily which could bring on GVHD, so it was short and sweet. My hubby brought up some things from our home about an hour away. Candy loaded us up with food. Sooooooo thoughtful. I opened up more cards that had piled up at home. Thank you! That's about it. The fatigue is unbelievable. And I generally just don't feel well but I wouldn't call is nausea. Lots to be thankful for but I'm pooped so...night night.

 Fun distraction is good ... and a 4 hour nap! My little sis came into town yesterday to give Andy a break and make sure I am OK. She really is taking care of me - to say it plainly, I'm a little loopy. 17 + meds 3 times a day and all different at different times. I've resorted to a wheelchair because my legs are made of Spaghetti.  She married into an Austrian family. She and my brother in law have been teasing that now I should speak German (my donor is a 20 years old German woman).  Here's how she shows up. I could not stop laughing.. She got all her detailed instructions from my hubby. He has been so great. I'm usually on all my medical stuff myself. I really could't right now with the extreme fatigue and loopyness...Of course my sis was a quick study. Here she's learning how to do a Heparin lock of my central line. Not much else to report. We've talked and laughed. Went into the clinic and they adjusted a few things. In-and-out for lunch and then the mo...

 I am laying here, waiting for. my hubby to get here with my sister who will be giving him a break for the next 5 days or so...I realize we forgot to post yesterday.  Yesterday we went in for the first of the 3 days per week visit to "clinic" at which they do labs and I meet with an APP, Advanced Patient Provider. I actually went in my PJs. I just don't have the energy for the smallest things. The three hour appointment went well. Our biggest concern is getting enough good calories in when absolutely nothing sounds good. I take about 20 medications with each meal, which doesn't help. And I've thrown up a few times after eating, unable to determine if I got the meds or not. We just move on and hope for the best but I'm doing all I can to ensure that doesn't happen. They said yesterday that a medication I am on for another 18 days can be really hard on the GI tract but "you won't feel human for 6 months or feel like yourself for a year." They a...

 Hey everyone, Andy posting tonight. Unfortunately Cath threw up a very yummy Shepards Pie that Hailey made for us. That was about 7, a half hour after she ate and had taken her evening meds. The amount of meds Cath takes is crazy, a few of the critical ones are taken 3x a day, with many others sprinkled in throughout the day. I had to wake Cath at 9:30 this morning because I didn't want her med schedule to be condensed for morning and Noon. Ideally she should have her morning meds at 8 am. I'm going to have to get tough with her!😂 Cath had such a wonderful nights sleep, no nurses checking in every 3 hours. I hope she gets many more to come. Her energy levels are still very low. Her first clinic appointment is at 10:30 am, to draw blood and then get evaluated by Dr. around 11. On her non clinic appointment days, Tues.,& Thur, Sat & Sun. I get to flush her Tri-port with Heparin. 3ml in each one. A sterile procedure that isn't hard but following the steps is the key....

From yesterday, forgot to hit publish, my bad. From about 10am. I awoke praying, giving thanks for his granting me so many big things Lord, but could you please stop this game of whack-a-mole with all of symptoms that seem to be something different every day. I will have some big stories about the days of hallucinations and let's just say I have a staff worried too. But I'm feeling much much better and my energy level is a little higher, but I'm still on motion restrictions so I have to wait for them I decided to retest to see if I could possibly get off of the alarms bed and chair so that I can move around and pack and stuff a little little today. Of course the nurses are rolling their eyes of getting out of here by one it's more like getting out of here by four, which we kind of knew. But took the doctor at herface value. I'm excited to start phase 2 of this adventure and see where that leads us. I hope everybody has a wonderful day today. Love you all very much. ...

 Where to start about today, Great news:                                               White Blood Cell count yesterday - 2.7.  Today 7+.   Yay!!!!                                                          Platelets -  Yesterday - 62.   Today 103                                                                      Neutrophils - Yesterday - 2.16. Today 5  If I had the energy, I'd look up the spans for normal. I'm just pooped.  A new probably response to ...