@fifififi It must be quite a culture shock for you to come to the US from France and move to Oklahoma…smack dab in the heart of the country. Even more difficult if there is no family around for support. Well, you just gained a new family in Connect. ☺️
Believe me, even without a language barrier, having a bone marrow transplant can seem overwhelming with all that’s required of both you and Christopher. The caregiver has a difficult job…your husband is ‘just along for the ride’. Or at least that’s how I felt as a patient. My job was to focus on my health and following the direction of my transplant team. My poor husband was doing the worrying and the work to pick up my slack. LOL. And believe me there was a lot of slack. 😅
But that hard work all pays off with a healthy second chance with life. You and your husband will get through this too but the logistics aren’t easy with all the travel and such.
From experience the whole transplant scenario can feel so overwhelming. I think the biggest thing was the relocation and logistics of making that happen. Our social worker was very instrumental in pointing us in the right direction. The clinic where your husband will be obviously have other people in the same situation who needed lodging with pets. That would be the easiest for you because it’s a strain on you and your pets not to be together.
You’re so right, all the medical terminology is like a 3rd language even if you’re from the US. 😅 But I learned a lot from my experience so if there’s anything you’re not familiar with just ask me. There are a number of us who have had bone marrow transplants for various blood cancers so you’re not alone here. We all have your back.
Is his transplant in a larger city?
All of this started November 9th, 2019. He didn't feel good and finally agreed to go to the ER (men...). Within 3 months, he was 17 times to the ER and 11 times hospitalized. He was diagnosed with HUD, sarcoidosis, liver cancer, but each time it was a false positive. He was 4 years on steroids, which made him become diabetic. During the pandemic, it was him and Bubba at home (that's why I can't separate them...), while I was working as a caregiver. When we arrived in Tulsa OK, he stopped all medication and started feeling better, until he was no more. His platelets went down to 13, then to 7, that's when they hospitalized him again and diagnosed him with myelodysplastic syndrome (it took me about a month to get this word in my brain!). Ever since, he has chemo 6 days a month, he still works (he is a salesman) and the rest of the time, he sleeps. When his appointments for work are far, I drive him to make it easier on him.
Our social worker is nice, but it seems that I should know things she is talking about that I don't know. I am retired (I am 66) and Christopher is 10 years younger. He was supposed to be my retirement plan (that's a joke between us) and look at me now...
It breaks my heart to see him so weak and sick, I feel helpless, I spend my days sending emails to find grants, we moved to a cheaper apartment without stairs, and paid rent for a year.
The rule at the hospital is that, if we live more than 100 miles away, we must stay in Oklahoma City 2 months after the transplant. We live 106 miles away... They make life so much more complicated for 6 miles!!!
I don't even know if anything I say makes sense, I just spit it out as it comes...