Hi Lori!
Hope you are doing well and having a good week.
We just received news that my husband achieved complete remission with no signs of the mutation. Prayers answered! The most recent biopsy shows no new blasts and is hypocellular which they say is because he just completed the last cycle about 5 days prior to the biopsy. So it is hopeful and a favorable position to be in heading into transplant. Admission is June 5, and the grand adventure really takes off!
I wish I could say I am feeling a lot lighter with the great biopsy news but the heaviness of all this continues to weigh us down. We are trying to enjoy a few days away but the realities of our life now come creeping back in. Given the timing of your transplant you know the feeling of what seems like everyone around us is getting ready for summer, making plans and enjoying the longer days, while we are in a scary limbo with much different plans for the summer. I am grateful, don’t get me wrong, it’s just all the little losses that add up to silent grief. I took some advice today that I heard recently and made a list of the personal losses I am experiencing as a caregiver. It helped a bit I guess as it forces me to give it voice and acknowledge it even if it’s painful. Better than getting the grief stuck in my body and unexpressed.
One more thing I wanted to mention. The team is going to put my husband on a maintenance dose of Azacitadine and Venetaclax around day 60 post transplant and after he is weaned from GHVD drugs. Do you know anything about how well people are doing on this regimen?
As usual, I appreciate your ear, your empathy, and encouragement!
Mary
Hi Mary, Boy do I ever have memories flooding my brain this morning. Those months before, during and immediately after transplant were life defining for both my husband and me. I sure do remember having to put the summer on hold and feeling a sense of loss for all the things we’d be missing! I also felt a level of guilt being the one that forced us into that position. That was a stupid thought because this illness was nothing I caused nor could have controlled. But it was something we could treat and potential cure! So onward…summer would wait. And actually my husband had a great time in Rochester that summer and kept very busy.
A couple weekends a month our daughter would drive down from Mpls and ‘baby sit’ me so my husband could go back home to check on things. It all worked out so well and time sped past quickly.
Now, 5 years later, the lost summer is forgotten and I frequently consider all of the opportunities, experiences and accomplishments I’ve (we’ve) been able to have because I had the transplant. Two days ago we celebrated our 50th wedding anniversary together. That would have been impossible without the transplant. So we both happily agreed it was worth putting that summer of 2019 on hold.
I think once the transplant journey gets started, you’re going to find you have free time to zip back home to check on your house, gardens and hopefully visit with your dog for a few hours if you feel it’s appropriate. We all cope differently with extreme events and there is a mourning period for each of you because there are changes, losses, adaptations ahead. Ugh, I hate the term new normal, I refer to it as my altered reality, but you will eventually find a rhythm to your days and this will just be a different summer! Doesn’t mean bad, just different. 🙃
That’s fabulous news about your husband’s clean biopsy! A big hurdle out of the way. Though I get what you’re saying…now it’s really going to happen and feeling pretty real! My best advice…Let his team do the worrying for you. This is not their first rodeo and they have his back! They want success for your husband as much as you do.
While this wasn’t in my personal experience, I have read recently of more patients with MDS and AML, who are at high risk and having a bmt, being placed on a maintenance dose of Azacitadine and Venetaclax after transplant. It’s like ‘belts and suspenders’ to help ensure encouraging responses in high-risk MDS/AML. Two people whom I mentor locally, one with her transplant last year and another who had her transplant about 6 months ago are both on the maintenance program and doing well. No signs of relapse!
I’ll be counting down the days with you, Mary! Sending positive vibes your way! Don’t forget to breathe! 🙃