I went to a support group meeting the other day. It occurred to me, as it often does, how hard it must be for the MM patients to sit there and hear about people not doing well or passing away. Our group is very small, despite living in a very populated area and our practice having over 300 active patients, but maybe this is a big reason why it is small. Some patients find it very depressing and don’t want to sit and talk about MM. Tim is one of them who refuses to dwell on it and would not do the support group thing for that reason. It is scary and heartbreaking for me too, especially as we lose members who have died, but I think this long, stable period of Tim’s has succeeded in making me a bit complacent. I feel temporarily removed from the immediate threat of losing him. Though that bout of disseminated shingles, and the fact that his m-spike is creeping up slowly, seems to be snapping me out of that complacency.
Sadly, a friend of mine is on hospice now. This hits particularly close to home for me as he has a daughter that is just a few days older than Olivia, also named what I almost named Olivia. Elizabeth. Craig’s story is a heart-wrenching one. He was working in Boston and had an apartment there and would come home to Jersey on the weekends. He got sick and lost consciousness in his apt. When his wife, Leslie, could not get a hold of him, she sent someone from the building to check on him and he was found. He had sepsis and was in organ failure. The first hospital suspected MM. He was transferred to a bigger hospital and, at one time, had 26 different IV’s pumping into his body. He wound up with pretty much every hospital borne illness/infection there is and the doctors told his wife with all surety that he was never going to survive. Somehow, he did. She found our doctors down here, the MM specialists, and wanted him transported. When our docs saw his records, they never thought he would make it out of the hospital in Boston alive. He did, and was transported back here when he was stable enough to be ambulanced down. He eventually had a transplant, which didn’t work for long, and has been on chemo ever since. In between, he worked on his “bucket list”, taking trips and buying a Porsche convertible. He has been close to death 2 other times since then, the last time being February, when he had a respiratory infection that led to I guess a type of respiratory failure. I found out that one of our docs basically told them to let him go. His wife insisted that they intubate him and put him on a ventilator to help him and see if he could kick the infection. She saved his life. He survived again. Craig is a fighter, and, being only in his 50’s, his body is pretty strong. Unfortunately, his MM refused to back down to chemo and when his DNA was checked against the registry for an allo donor, he was told he had a very unique DNA profile and a match could not be found and probably never would. The last time we saw him, I could tell he was very weak and the fight was leaving him. I think he knew. I got an e-mail from his wife 2 weeks ago and he is on hospice at home. I cannot even imagine, despite what we’ve lived with these last 6 1/2 years, how painful this must be. To add insult to injury, his daughter has significant health issues also and her life has been just a nightmare.
The speaker at our meeting the other day is a woman who runs the central Jersey support group, Paula Van Riper. She has been fighting MM for 14 years and has had so many treatments, including an allo transplant from her brother. Just so many fighters I have met on this journey. The courage I have seen humbles me.
But, when you see someone with young kids that has MM, it is particularly heartbreaking. I’ve said this before, the fact that our daughter’s life did this “180” at only 8 years old is the worst heartache in all this. So damned unfair. So, my admiration goes out to all people fighting MM, cancer, and other illnesses, and my sympathy to them as well, today, especially to Craig, Leslie and Elizabeth. May you feel God’s Grace around you.