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| Photo credit Tibidabo Photography |
Can you believe 2019 is almost over, and 2020 is around the corner? A century ago, this decade was roaring. It didn't end so well though. I hope we get it in reverse. We've had our depression of sorts. I hope there will be things to celebrate for us this next decade and that it will be roaring in new, exciting and positive ways.
I have a lot to say today. I hope I can articulate. It has been quite a year. And I see I have not written in months, so perhaps some catch up.
There have been some highlights to this year for sure. Dom's sister married an amazing (and lucky) man. We were so honored to be there, and never could have made it without his family. I am happy that Dom was well enough to make it, and the next chapter of gvhd didn't hit him until just after the wedding.
We had friends show up with headlamps to survive the first of many power outages with us.
I was gifted a trip to Southern California to celebrate a big anniversary with my Dad's Aunt and her husband. I'm so happy for them, and it was a great time to see relatives I haven't seen in years.
Then, some more power outages and another fire scare.
I had bags packed by the door for weeks, possibly months.
I used the power outages as an excuse to just totally check out. I couldn't work without power. I wouldn't work outside if I couldn't shower. (We lose water with power loss.) So. I just sat inside and fretted. And Dom took lots of nice naps.
At the tail end of all that I was able (again through someone's generosity) to visit a good friend on the other side of America. I flew to Boston and chatted my friend's ear right off. She is my sunshine. I'm sure I was like a nervous chihuahua to her, but she loves me anyway.
There have been definite highs to this year. And, we are so grateful for everyone who has cheered us on this journey. And, as we're going into our fourth year of medical bills, we're eternally grateful for the financial gifts given, and think of you regularly. Honestly. Whenever I feel down for whatever reason, I remember that people saw this need and met it, and being seen is a top thing for me.
There have been some highlights to this year for sure. Dom's sister married an amazing (and lucky) man. We were so honored to be there, and never could have made it without his family. I am happy that Dom was well enough to make it, and the next chapter of gvhd didn't hit him until just after the wedding.
We had friends show up with headlamps to survive the first of many power outages with us.
I was gifted a trip to Southern California to celebrate a big anniversary with my Dad's Aunt and her husband. I'm so happy for them, and it was a great time to see relatives I haven't seen in years.
Then, some more power outages and another fire scare.
I had bags packed by the door for weeks, possibly months.
I used the power outages as an excuse to just totally check out. I couldn't work without power. I wouldn't work outside if I couldn't shower. (We lose water with power loss.) So. I just sat inside and fretted. And Dom took lots of nice naps.
At the tail end of all that I was able (again through someone's generosity) to visit a good friend on the other side of America. I flew to Boston and chatted my friend's ear right off. She is my sunshine. I'm sure I was like a nervous chihuahua to her, but she loves me anyway.
There have been definite highs to this year. And, we are so grateful for everyone who has cheered us on this journey. And, as we're going into our fourth year of medical bills, we're eternally grateful for the financial gifts given, and think of you regularly. Honestly. Whenever I feel down for whatever reason, I remember that people saw this need and met it, and being seen is a top thing for me.
But.
I think people are afraid to ask, or to hear how Dom is really doing. I'm not sure. I think we all want him to be well. It struck me though, as I read a card from a distant relative expressing that they heard Dom was doing better. There didn't seem to be room for the ways he is not doing better. He is doing better. He can walk and he isn't in the hospital. That is better.
But, the truth is, he is no where near better.
The gvhd has been a much larger battle than the cancer. Once one thing seems better, something else crops up. Since July, he's been battling a debilitating attack on the lungs. His lung function is just 30% of what it should be. This means, he is unable to exert himself beyond walking little bits at a time. As I've mentioned before, we really should play the lottery, as he has hit the jackpot of every possible gvhd manifestation. These manifestations of the disease are not things he can have much control over. We're at the mercy of drugs and the photopheresis treatment. (After this long battle, we're also at the mercy of the government and voters.) It's a very vulnerable place. The weight on my shoulders is feeling pretty heavy just now, and I think it would feel a little lighter just to be....as I mentioned earlier....seen. It feels better to me acknowledge that this is really hard. This seems never ending. I think people want an end date to it. I think people don't know what to do with us. And it's important to me that while we all practice seeing the positive and being grateful for the improvements that occur with the same speed as a turtle walking through molasses, that people also understand that we are no where near normal right now. I'm being more honest than I've felt I can be. People have told me how strong and gracious I've been through this, and honestly, I feel like a fraud.
I've mostly had to sit with my thoughts and process them alone. Thankfully, I am married to someone who I feel most me with, and have been able to share even the darkest parts of my heart with. But he's too nice, and maybe I need a good shake!
Sometimes, I feel adrift as our circle shrinks due to our highly unusual circumstances. We don't fit in many molds right now. And as I look around, I know that very few people have it all. I've said prayers all day for a friend getting surgery to hopefully take care of some chronic pain. Another friend's child is embarking on his own journey with Leukemia just this week. Friends have been in and out of employment, waited for their home to be rebuilt from the fires, watched their children suffer ill health or poor choices, lost pets, lost parents, or have even lost heart. I realize there really isn't a mold. We're all just spread out in different ways. Some of us, sometimes, thinner than others. But in order to not lose heart myself, I'm being honest.
Sometimes, I feel adrift as our circle shrinks due to our highly unusual circumstances. We don't fit in many molds right now. And as I look around, I know that very few people have it all. I've said prayers all day for a friend getting surgery to hopefully take care of some chronic pain. Another friend's child is embarking on his own journey with Leukemia just this week. Friends have been in and out of employment, waited for their home to be rebuilt from the fires, watched their children suffer ill health or poor choices, lost pets, lost parents, or have even lost heart. I realize there really isn't a mold. We're all just spread out in different ways. Some of us, sometimes, thinner than others. But in order to not lose heart myself, I'm being honest.
So what I'm trying to say is....I need some TLC. I need that extra mile. I need to be surprised by joy.
And with this confession; I will tell you the good news.
Dominic has celebrated his second birthday with his new bone marrow. And the results of the bone biopsy are clear! He is two years cancer free! So as we enter this new decade, I am hoping that Dominic can take his two years cancer free, and his 99.8% donor cell status and be miraculously healed of this residual gvhd. And as we push through, even with my dark thoughts, I hope regardless of how swiftly or slowly his healing comes, that we can use this whole experience and one day be a light to others.
Merry Christmas and Happy 2020 with much love from us~
