Milestones

     The past week and a half of collection were exhausting and we are both so glad to have that milestone marked off the list.   We haven't had time to celebrate yet and instead have just been trying to recover.   However this is a huge and potentially life preserving milestone!  With so many new treatments on the near horizon we hope that one of them can bring the cure for myeloma and that it will come during his lifetime.   However transplant is the best treatment to give him the longest life expectancy to wait for this cure, so collection was a very critical step.  It was very long days for me, however I'm so glad I could be there with him to support him because as exhausting it was, it was so much more difficult for Chris.

     The process was very interesting and even though we tried to learn what to expect ahead of time, there were side effects we didn't know to expect.   We were prepared for 1-2 shots per day, however in total he received 32 shots, not a fun surprise.  As well, Tylenol and Claritin only took the edge off the pain.   We also did not know that it would cause fluid shifts and retention.   We've been trying so hard to get the extra fluid off, but are back again at square one. 


     Dr Sborov's goal for collection was 10 million, and Chris exceeded the goal and was able to collect 11.5 million.   Yay for reaching this goal!   The minimum that they need for a transplant is 2, but closer to 5 is ideal.   So depending on what they choose, he has at least for 2 transplants.   Multiple transplants are pretty common, and sometimes they even do them one right after the other (called Tandem). 

      During collection, we had three different tech's overseeing the process and running the machine.   These techs are the ones who also work in the lab processing, counting and prepping the cells for their time in the freezer.   They are also the ones who are responsible for thawing them and helping with transplant so perhaps we will see them again.  They were great at answering questions and we learned a lot, or at least had a lot explained to us that we tried to absorb.  Much of the details go above our head, but they explained that they use the marker CD38 to count the stem cells.   I had researched about the new medication they want to start him on that had mentioned CD38.   Daratumamab (Darzalex), is a immunotheraphy drug.   It helps the body's immune system to find and destroy the cancer cells by binding to CD38. 

     If you haven't gathered it already, myeloma is complicated! 

     Because of collection, the meeting that we've been anxiously awaiting with the cardiologist, Dr Ryan, that was scheduled for the week of collection was moved to the week before.  His father has heart disease and has been in and out of the hospital for the past six months so hearing that there may be problems with Chris's heart has had a very worried for the past couple months.   The appointment was a bit anti-climatic but we came away with some assurances and clarification.

• Pulmonary Hypertension is high blood pressure in the arteries to his lungs.  All of the respiratory issues we have been dealing with (the tracheal stenosis and trach) have been difficult for his heart.  However, the condition will likely not have any impact on his life expectancy.   It is both good and safe for him to exercise. 
•  Dr Ryan does not feel that it is a barrier to receiving a stem cell transplant. 
•  The swelling in his legs that we have been battling is a symptom/side effect. 

     One aspect of our marriage that I've always loved is how much we enjoy talking to each other.   He's someone who I can talk to about anything and we never run out of things to talk about. 
     Before his most recent challenges, he would often take me to and pick me up from work.   I work only a few miles away, but it was nice to have this time in the morning and at night to look forward to.  He hasn't been yet been able to do resume doing this, but with all of his appointments we have a lot of time to talk while driving and waiting.   I'm so glad he proved the doctors wrong when they said he likely wouldn't speak again!   Among other things, we've talked quite a bit about a bucket list.   Even before the cancer diagnosis we would toss out ideas, but with a bucket that developed holes and is leaking out precious moments we are trying to figure out how to find the balance to accomplish some of the things that we've always wanted to. 

     We'd love to hear some inspiration, 

what's on your bucket list?