The Road Set Before Me

Written by Dawn. Yesterday, we had a family meeting with my medical team about my upcoming stem cell transplant. Today I had my regular labs and an in-person appointment with Dr. A and the stem cell coordinator, Megan. It's been a busy week, and everything is coming together for the procedure! I'm excited, but I know I'll be pretty sick before I'm feeling better.  I was supposed to have my regular immunotherapy tomorrow but that was cancelled today! Although I was willing to still have the procedure, it doesn't seem to be helping, and honestly I'd rather have the time to rest up, preparing for the transplant. So hearing it was cancelled was a happy moment today! This means that I'll likely be able to attend church for two more Sundays until my official "hibernation" begins.  It's hard to summarize everything we've been told over the past couple of days, but a few things stand out. One question I asked today was, " What happens if the t...

Hi everyone, it's Dawn here.  Last week Dr. A had me redo my labs (with the big spike) to see what kind of results we'd get with only 2 weeks between tests. The full results were back by Monday.  There was another big spike.  Also on Monday (Oct 5th) we got a notification that Dr. A wanted a meeting with us. We figured there'd be a pivot and we were curious if I'd begin the Line 1 drug (as mentioned in our last post) or if he got compassionate permission for me to skip to the Line 2 drug. What happened surprised us too.  He told us that we would look into and likely go ahead with a Stem Cell Transplant (SCT)! His reasoning is that both my heart and kidneys are stable currently and, although the proteins are increasing, he doesn't see evidence that the Amyloidosis is causing issues yet. This is an optimal time to do an SCT!  It was quite a pivot and unexpected, and we've had to process it, but we are excited - and apprehensive too.  Shortly after talking wit...

Written by Dawn. So there hasn't been much on this blog but life has still had its busy times here! We thought we'd do one post for the four events/occasions lol.  We had a very busy Thursday (Sep 17). Somehow I was double-booked to have my labs drawn at the same time as I had a follow-up appointment with my cardiologist! Not sure how that can happen with a computer program making the appointments, but it can! Long story short, we asked for the cardiologist appointment to be moved if possible but if it couldn't be, we'd work with what we have! Turned out we had to do the latter . (2). So I went earlier for my labs, hoping I could be done quickly. And that worked!  Labs at 8, (3) Cardiologist at 8:45 and (4) Dr. A at 9:45! That ended up being quite busy, but sometimes it's nice to get a lot done at once, right?! Labs are still coming back  My cardiologist said that according to the Echocardiogram that I had on the previous (1) Sunday, my heart condition is "stab...

Written by Dawn. Happy to say that yesterday's treatment was uneventful. I've learned through this journey that ho-hum is good - well at least for how treatments go!! I have to take an antihistamine and 3 Tylenols prior to my immunotherapy, so I end up falling asleep after we get home. Other than tiredness, side effects are minimal with some aches and pains, and sometimes a bit of nausea. My immunotherapy is nothing like chemotherapy.  It seemed a long time since my last treatment again but it was only a bit over a month - July 28 and today. I guess the summer busyness, my birthday celebrations and also a week of camping snuck in there made it feel longer. Either way, it has been an enjoyable August for me and I thank God for that!  Birthday thank you notes have kept me busy and I've completed 2/3 now. My birthday flowers are now reduced to one multi bouquet and I've got a plate of seeds drying out. I'm hoping to plant a birthday garden with the seeds next spring! ...

Today Mom had her labs done, and then she and Dad went to her appointment with Dr. A. This was Mom’s first time seeing him after the stem cell retrieval and it was nice to hear that Dr. A was happy with the stem cell retrieval results. He also said that he isn’t too concerned about her bloodwork results rising, especially since Mom is feeling good. He said they will continue to monitor her blood work and assess it every month. Last week we celebrated Mom’s 60th birthday! We celebrated as a family on the holiday Monday and told her about the open house we had planned for her on the following Saturday. She sure was surprised!  We kids knew we would have to tell her beforehand, but we didn’t want to tell her too early, or she might start stressing over the party. I think it worked out well to tell her when we did, and she was SO excited to have a party! She even said that she just couldn’t wait to chat with everyone! THANK YOU to everyone who stopped in to wish her a happy birthday! I...