17 years

Today, March 8th, 2024, is 17 years since we were told that Tim has myeloma. The gratefulness I feel is hard to put into words, partly because there are so many other emotions also tied to it. In 2007, especially after a failed autologous transplant in September, we didn't even dare to hope that Tim had a chance to live this long. From what we were told, we'd be lucky if he saw our then 8 year old reach her teen years. We were told that only with an allogeneic transplant would he have a chance to see her graduate high school, a treatment he took a pass on after a phone consult with Dr. Durie from the IMF. Guesses about his life span, that we NEVER asked for, ranged between 2 and 5 years. Sadly, there are myeloma patients that only see those time spans. My gratefulness over our good fortune is always tempered by remembering friends and aquaintances that were not as fortunate as we've been, some of which didn't make it to their kids' graduations. And when people hear about my husband's cancer, those who are not fighting a cancer battle themselves, they don't have a clue what these 17 years looked like for us. They only see it in a one dimensional way, that we are so lucky. And, we are. But, from a realistic standpoint, most people would not consider being diagnosed at 43 with an incurable disease, when you have an 8 year old daughter you want to raise, a lucky break. It's not. 2007 was the worst year of our lives. 2008 was brutal as well. And I know for sure that it was only the very long breaks in treatment that Tim was able to take that gave us a chance to get our feet back under us and the ability to exhale ever so slightly. We still lived month to month, or sometimes every 2 or 3 months, sweating out those lab reports or scans. The fear and sadness still hangs over us that anything can happen at any time and we are not able to plan things for the future with any sense of certainty that our little family will still be intact then. The covid pandemic made things even worse in that respect as we had to curb what little social life we had and Tim is really tired of feeling like he is not living what time he has left like he wants to. Ya see, the thing about people marveling over how long he has lived with myeloma is the very next thought that runs through his head every time they say that......how much longer can he possibly have? I think he has this number in his head, 20 years, thinking that making it past that is out of reach. And 3 years does not sound like very long with how fast the months fly by. While I know people who have lived with myeloma longer than that, I think just the shock people have that he's gone this long, some of them in the medical field, makes him think he's on borrowed time. It's a scary place to be, no doubt about it. He is starting to become somewhat famous in our myeloma department as other patients learn how long he's had this, with doctors sometimes warning them that his case is not the norm. One doctor told a new friend of mine, whose husband was diagnosed a few years ago, that Tim is an anomaly. One doctor told us he was a fluke. Comments are made that "you can't go by him." I dunno, there were no immunotherapies back in 2007. I think that with these modern treatments we have now, living this long will be much less of an anomaly for people diagnosed now. I believe Tim is enjoying the "fame" a little but, lately, I can tell he is also bummed to think that he will probably not be "allowed" to go off treatment ever again and that is a sobering thought for him. He developed a lesion on his sternum a few years ago, while off treatment, despite very low marker numbers so his doctor is not inclined to let him take any more extending drug holidays. These days, he is taking Darzalex shots once a month and his m-spike is tiny, .07 on his last lab report. His doctor let him drop the Dex because the side effects were lasting too long and making it hard for him to keep working and run his business. His quality of life is MUCH better without that awful stuff. After 4 years of distancing and masking, he finally caught covid in January, probably from his visit to the cancer center. They re-instated their mask mandate but are not enforcing it very well. Despite being masked indoors the few places he ever goes, it got him. It was a miracle I didn't catch it. We lived on separate floors for a few weeks. He recovered well, thankfully. Life is speeding by though and he's not happy with less vacations and outings. We stopped going to the beach in season and now go in the spring and/or fall and stay in private rentals instead of hotels when possible. He doesn't go to restaurants with his friends unless it's outdoors. He broke that rule last May to attend a friend's 60th birthday. He got sick and was sick for over a month, spreading it to Liv and myself as well. Speaking of last year, Liv moved out in June. Talk about conflicting emotions. Jeez, this sure triggered that. We are so proud of her. We are happy for her. She moved to an apt. 3 blocks from the Asbury Park boardwalk and beach. She has 2 roommates. She loves it. But, wow, do we miss her. Life is very different when someone who lived with you for 25 years moves out. She has not found a new job yet and her company still wants her coming into the office a day or 2 a week, so she started out staying here overnight once a week but now is down to just driving up for one day and going back the same day. We still get to see her, briefly, sometimes, so it has helped us as we adjust to being empty nesters. She's only 70 miles away so it's a doable trip for us to go visit her too. She had been living such a locked down life with us because of covid. Moving out gave her some normalcy back, though, that normalcy resulted in her getting covid 2 months after moving out. That damn virus is everywhere, especially if you live in an overpopulated state like New Jersey. So, this is what life looks like 17 years into this myeloma journey. We have been very fortunate, from the standpoint of a myeloma patient and caregiver. We are so grateful that we succeeded in raising our daughter together. That was the number one goal. We saw that high school graduation together, and the bachelors degree one, and the MBA graduation too. She's out of the nest and standing on our own 2 feet. It's a blessing and, in some ways, I think it's been a miracle. Life has not been easy for us these last 17 years but, like the old saying goes, it could have been worse.....much worse. We have reached a lot of milestones, not the least of which was Tim turning 60 last month. We have made a lot of memories. We've gotten some vacations and adventures in. In the end, all we can do in this life is make the best of things. I credit Tim with having the courage and mental strength he's had to refuse to let myeloma define him and rob him of whatever time he has left. He made this promise to himself 17 years ago and he made good on it. He amazes me every single day. Cheers to spring and 2024! Be well!