Not better, just different

 

It’s not quite any anniversary or milestone; but I’ve felt the writing bug coming on. There’s lots to share, but lots we can’t yet share.

Earlier this month, someone well intentioned asked if Dom is better. It’s been playing in my mind ever since. Dominic is not getting better. I don’t think people want to hear it. We certainly don’t want to hear it. But it seems to be the plain truth right now.

I think it’s an easy assumption to make. He’s had all this treatment, of course he should be getting better, right?

He was getting better until May of 2018. That was just 5 months after the transplant; and almost a year after the cancer diagnosis. From the transplant in November 2017 until the following May, he was walking and getting stronger and stronger. But if you’ll remember, he had the acute graft vs host disease that nearly took his life. Yes. He’s better since then. He gained back half of the weight he’d lost. He can walk again. He is better since that terrible summer.

But, he’s not getting better. The chronic graft vs host is something we live with. 

Our last visit to Dr. Kiwan was very sobering. He pulled up information on his computer screen and showed us how very little there is by way of treatment for Dom’s condition. (I say condition, gvhd, as if it’s singular, but it is actually multiple battles on multiple fronts.) The treatment he’d been receiving for many years, that I wondered if it was actually effective, is now no longer included in the roster of treatments. We’ve pretty much exhausted all modern science has to offer. 

Nevertheless, we are collecting doctors and practitioners like beads on a string. When I log into his medical account, where he once had an oncologist and a family doctor, he now has a team of upwards of a dozen people who are all working together to improve the quality of Dom’s life. Isn’t that something? I tear up just thinking about how many caretakers he has, and they’ve all been very kind and compassionate.

The latest treatment he’s been receiving, the monoclonal antibodies, does seem to be working for his kidneys. That is good. However, the treatment causes a loss of appetite, so he takes more pills to help with that. I’m happy to see his lab work coming more normal.

The worst bit right now is how damaged his lungs have become. The treatment for that currently in the 4 options Dr. Kiwan showed us is a lung transplant. Gasp. We’re not even close to that. 

I think in the shuffle with changing doctors and protocols, the severity of his lung issue got sort of overlooked because his kidneys were so concerning. But, a wet winter dialed up the volume. Let me digress a minute here. We’ve been blessed to live in a home on a beautiful piece of land that has been an oasis through all of this. 

The problem is, this home was never meant to be a home. Just as I discovered some real acute mold problems in the siding, and had set my mind to having some major work done on the house; the owner decided he wasn’t sure if he was going to sell or not. It’s put me in a bit of a rock and hard place, because I’m not investing thousands of dollars into a property that is not mine, if I may have to leave at any moment. This is not me asking for advice about the mold. Resist! 

All of that was to say, it’s been rough for Dom. Thankfully, the heat wave this past week has brought him some relief there. 

But, we did add a pulmonologist to the string of beads, and had a very productive consultation yesterday. It was our fourth medical appointment in one week. We have two more next week. There’s a new treatment plan for his breathing that I have fingers crossed will give him some real relief. More tests may alter or add to the course, but we feel relieved there is movement there.

I’m going to overshare now. Okay? Are you ready? I had to deal with a lot of really gross bodily functions throughout Dom’s illness. I’ve had to catch things and dump things and clean things, and carry jugs of things, and hoo boy. It is not for the faint of heart. But I could do it. No problem. 

But there is one function I cannot tolerate. I’ll give you a hint. I can’t really watch baseball. We have to bring a sample to the lab. Please pray for me that I am not in the house while he produces this sample, and that he puts it in a paper bag so I don’t have to see said sample? Thank you.

The doctor wants to rule out a fungal or viral infection in his lungs, so that’s that.

Now. Back to our home. Our beloved little cottage on the edge of a State Park. The property was put on the market officially. It’s been a lot for me to process. I’ve lived here for 30 years. I’ve lived here longer than any of the family members have lived here. I got married here. I’ve said good bye to over half a dozen pets here. I’ve had pumpkin patches in no less than 4 spots. I’ve had parties and celebrations with countless friends here. This place has my heart.

It also has 30 years worth of maybe I’ll need that one day.

Holy moly.

The problem is, there’s been so many times I reached into my Mary Poppins bag/house and did have some obscure thing I or someone else needed. It’s been positive reinforcement for hoarding. 

I just took a full load in my wagon to Forgotten Felines and Habitat for Humanity. I have five sizes of clothes up in here, and it’s time for some reckoning. All my spare time is being spent sorting and cleaning and prepping. It’s good. I love this sort of thing. But, it’s also a lot of work. The combination of ADHD and not tossing anything in the land fill if I can help it makes for a never ending list of to dos.

We do have a plan. That’s the part I’m not at liberty just yet to share. But we do have a plan. It will be a big change. It will have its challenges and it will have some real silver linings. I cannot wait to share the silver linings. 

Lots of change afoot for sure. 

And, since I wrote this draft on Saturday; we’ve been to appointment #5. Dominic will be getting oxygen to help him out. The plan for this appointment was to have him walk the halls until he needed oxygen to gauge how soon he’d be short of breath just walking. Um. He was already well below healthy levels just getting to the appointment. The therapist was very sympathetic to his plight.

Having an oxygen pack will help him not just to breathe, but to think and have energy. 

He’ll need that energy for what lies ahead! 

And, since I’m being evasive about what our plan is, I will say, England is not currently in the plan. We’d love to be closer to his family, but his sister and her husband are not even currently in the UK.

I wrote before on this blog about liminal spaces. I feel even more there than before. The house could sell next week, or not at all. I’m doing all I can to pivot. I don’t want to live wading through moving boxes; but I certainly can afford to part with a few things. 

Dom is parting with his 84 Toyota. It was a dream of his to fix it up and turn it into bio-diesel or some such. With the house on the market, we decided to let it go. Many people had asked to be notified if we were ever to sell it. The contractor who repaired the big house last year was one, and so we gave him a shout. He rolled up in a cherry red Toyota, so we know it’s in good hands. A dream deferred for us is an opportunity for him, and for the Toyota. It’s good. He’s a good man, and we’re happy.

Not to be outdone, (wink)

I’m sending a jewelry box I have had since I was 10, so for a really, really long time to a friend’s daughter. I remember going to the Cotton Candy Pink Sanrio/Hello Kitty store in the mall and agonizing over where I would spend my dimes. I wanted to eat my way through the Japanese confections and play with the stickers and toys in a sugar haze.

For my tenth birthday, I asked for a Little Twin Stars jewelry box.

I loved that little plastic jewelry box so much, I always imagined I’d pass it on to a daughter. (I have my Grandma’s Lane miniature cedar chest jewelry box). I saw my friend’s daughter in a little pink t-shirt with pink Sanrio characters and knew immediately she should have the box.

I’m sure sending off that little box will put a large dent in belongings. (eyeroll)

But seriously, it’s so nice to reflect on good memories, and anticipate new memories to be made. 

We have a lot to look forward to, and I can’t wait to share what is around the corner. I'll miss this pony Pip next door, but who knows what new friends we'll make!?

Until then, we're enjoying every minute. 

Hope you are all well and know you are loved.