When the rubber meets the road

This has been incredibly easy so far. I expected to feel OK for the first couple days and then start to feel badly. Today was the first reminder as I started a new chemo that requires several "premeds" that make me feel yucky as soon as they are pushed through the IV. I then got the medication, for which I got in bed and decided to sleep through it. Just as I snuggled in, the nurse came in with 3 large cups and ice chips and 6 popsicles. I had read patients get bad mouth sores in this process. The chilling of the mouth causing vasoconstriction, can reduce the sores. I am happy at this point to report I don't feel any. In the past, I got more sores down my throat. Time will tell.  Andy had gone home to get some sleep. Mason wasn't feeling 100% so he didn't come last night.  Julie, my little sis, was supposed to come today for 5 days but the Urgent Care told her they thought she has a virus so she didn't come.  Andy is back with a borrowed twin sized airbed and ...

 Last night, the nurse was very proud to say she believes in letting me sleep. She even unhooked me from "My Little Friend," the IV pole, since I wasn't getting any fluids or anything. It's so much easier to sleep without the tubes and the alarm going off if it senses I am pinching a tube by tossing and turning.  I fell asleep about 9:30.  She came in about 11 to get vitals and give me some meds.  She came in about 2:30am to draw blood.  Then she came in at 4:00am for vitals and that was it;' I was wide awake. How nice it would have been if she'd combined the last two.  After doing a crossword puzzle, I turned on the TV and fell asleep about 6. I woke at 7:30 to find my door wide open and a very loud group of people right outside my door. I was disoriented so my mind went to the assumption that my nurse had opened the door to wake me because I was going to be 1st for the MDs team doing rounds.  As I rushed to get dressed and brushed my teeth, I realize...

 Hi!  Last night after blogging, Nolan, our 2nd son, came to visit and bring a camping mat and small refrigerator for us to use while here. He brought Chipotle and it was a neat little time together, as always.  I slept better this 2nd night here. I appreciated nurse Kate trying to cluster things together so she didn't have to wake me as much. I also used a blindfold, which I think helped a lot.  I woke today with a lot of pain around the new "port" site. I couldn't move my head or raise my arm without an alarming amount of pain. I didn't take anything for it the day before so I was surprised. I must have slept on it weird. They also changed the dressing yesterday which was not fun, so that could have irritated it. They gave me 1000 mg of Tylenol which helped.  Again, I spent a lot of time waiting around for people the 1st part of the day. After the NP came in to check on me and I pleaded with her to do anything she could to get me retested for MRSA-so I could h...

 The Day 0 minus 4 means it is 4 days until the transplant is planned. It is simply the bone marrow immune cells injected in me through the new 3 pronged port. It is reported to be pretty anticlimactic compared to what people expect. Then is the process of seeing if the cells and my body like each other.  Today went really fast even though much of it was waiting for people. The nurse practitioner was supposed to come about 7:30 but it turned out to be about 8:30. I was answering texts and such as we waited for the MD about 10:30. He came about 12:30. Vitals every 4 hours: 8, 12, and 4 (each am and pm). I didn't really have any pressing questions for either one of them, which is unusual for me. Maybe it's because the nurses are so proficient in answering my questions. The MD did say to eat as much as I can because "it takes a lot of energy to rebuild an immense system).  I was instructed to either take a shower daily with their special antibacterial pink soap or use these ...

The day has finally come. It has felt like a marathon the last couple days like we were packing up to move, trying to figure out what we might need/want for 3 months. Of course, Andy can get things we might need  when he goes home here and there. Monday traffic was surprisingly light this morning. Getting the new port wasn't bad but they tried to put it in the left side of my chest but there was something different about my anatomy so they had to put it along side the other port on the right. The incisions are sore but not too bad. After a nice anesthesia nap and recovery, we went to lunch at Panera and then it was time to check in. We are in a new tower of the hospital which is much cleaner and updated than where we were in July.  I especially like that the room has a normal shower, unlike the other room - it was more like an RV bathroom.   I was taken down for a chest x-ray as a baseline, have been unpacking and organizing, have been given several meds (ugh!), weig...

 That's about all I have for an update. So many people are asking...I thought I'd just put out that little post.  On the other hand, I've been thinking about and sharing something with others that I don't want to forget. I have a deep sense of gratitude as I look back to when I was diagnosed nearly 8 years ago. I've missed out on very little as a result of this challenge - and I've gained so much.  #1 I grateful that I was diagnosed after 2016. Two of our sons had beautiful weddings that year without the dark shadow of a new cancer diagnosis looming over those blessed events.  #2 We were blessed by a couple who have been dealing with similar challenges all these 8 years who are like family to us. We have so many special people in our lives - it's like "an embarrassment of riches."  #3 We've traveled and enjoyed so many things that God knows are important to me. I think it's been confusing to many (including to me sometimes) how I could have...

Howdy. I so hope your 2025 is starting off well. We had such a wonderful holiday season with an exceptionally fun time celebrating my 60th birthday, the end of 2024 filled my emotional cup in a very special way. It's been nice having these unexpected free days since going into the hospital was postponed to get organized a bit, meet with friends from my Al-anon group, see our small group from church, go to church which I love, and just regroup after such a busy time.  I got another call today from the nurse transplant coordinator. It turns out donor #2, from Poland, is not eligible to donate for some reason. The nurse explained that donor #1, from Germany,  was re-contacted - she had told the doctors she could not donate for at least 2 weeks later than what they wanted. Because there is some danger in waiting (if the lymphoma comes back, I'd have to do chemo again before transplant), they had gone on to #2. The first one is now able to donate 1/30 so I will now go into the hosp...

It's be a whirlwind getting ready to be away from home for 3 months. The transplant team calls it the 100 day process. Today it all stopped suddenly as I got a call from Lindsay, the nurse-transplant coordinator. There is some issue with the donor in Germany. There were 3 10/10 donors found through the registry. They've decided to use the donor in Poland but that person needs more time. So...the plan is to get a new CT at some point in the next 2 weeks, to make sure I am still in deep enough remission for transplant without more chemo. Then I will enter the hospital Jan. 26 (day 0 minus 5). I would get the harvested cells Jan. 31. With 3 - 4 weeks in the hospital and then 2 months in an apartment near the hospital, I hope to still be home to worship with my family on the best day of the year, Easter Sunday! 

 As a dear friend just pointed out to me - it's like I'm getting ready for an extended trip and have many loose ends to wrap up this week. It's been a busy but blessed time lately with a wonderful Christmas and most of my siblings and all our kids and grandkids coming in to give me a very special 60th birthday New Year's Eve.  I've now met with all the required people, twice each, for the readmission interviews and information. A nurse had to "talk me off the ledge" after I read a bit too much about GVHD - Graft Versus Host Disease - a possible side effect of treatment and transplant. She convinced me that the serious versions of this is much more rare than what I had read online and that they have a terrific record of controlling and treating it. In fact, she taught me that a small amount of it can be good to help wipe out lingering cancer cells in the body.  I asked questions about the two months after the 3-4 week hospital stay. It turns out that, if my...