R’s back home and ready to take on the next chapter.

He barely slept the night before, so excited to sleep in our own bed, sip good morning coffee, enjoy home cooked food, bathe in the large shower stall with dual shower heads—hot water coming from both sides. And best of all, to feel the comfort and peace he can only find here, the place we raised our kids, the place filled with all the things in which we find joy and meaning.

At his request, our daughter and I made a cake for the nursing staff.

We said our thank yous and goodbyes, packed up all his stuff and busted outta there.

The team at Fred Hutch will stay on top of his journey with labs at least twice a week, dressing changes (the stuff that covers the port in his chest), another bone marrow biopsy and a host of other check-ups with specialists.

The only problem issue at the moment is gout in both feet, thus, the wheelchair in the photo. He also has a walker. The gout should clear up soon — or at least it better. I’ve never had it but I’ve heard it’s terribly painful.

My new home routine will include changing out his towels daily, recording all the food he eats, sanitizing every surface in the downstairs, including drawer pulls, bathroom hardware, stovetop, refrigerator handles, countertops, microwave, door handles, bedside table, phone, keyboard and mouse. We’ll take his temp twice a day and hook him up for a daily home infusion of magnesium.

Myelofibrosis patients take drugs to help prevent or lessen the impact of Graft Versus Host Disease (GVHD), when the donor cells attack the patient’s organs thinking, “Whatchoo doin’ here? I’m gonna kick your butt cuz I don’t recognize you!” Anyway, the med, in this case Tacrolimus, damages magnesium absorption by the kidneys which can cause heart rhythm problems, muscle cramps or tremors, seizures and more.

Some patients have to go to the clinic every day for this because their insurance doesn’t cover the expense. We’re very fortunate. It takes 3 hours to complete and R gets to do it in the comfort of home.

Life is good at the moment! Our daughter is staying with us to help with the transition. She has been super hands-on before, during and after the transplant. We’ve visited with our sons, but the oldest less so, because he has 2 young school-age children and someone in the household is almost always sick. With R’s vulnerability to infection, we can’t risk being with them and miss them terribly.

But, the important thing is that R’s home. Our warrior hero! He roughed it out and never complained to anyone. He is a rock.

Time to make plans for the future. We have so much life left to enjoy.

I’ll keep posting here but maybe not so often. We hope for smoother waters ahead.

THE LAST INSTALLMENT OF THE GIRL AND THE COLLEGE DUDE SAGA

Finally, he admitted he had feelings for me. He resisted it for a year and a half, and being the highly intelligent and forward thinking man that he is, realized he couldn’t live without me. Hah! I should have said, “I told you so!”

He was quiet, mature and thoughtful and I was a loud diarrhea-of-the mouth kind of girl. Me: “I’m here!!!! Let’s talk and be best friends forever! I can do a backflip from a standing position, on a beam!” Him: Do you know anything about Jean-Paul Sartre and the philosophy of existentialism? I like fusion jazz and fresh baguettes with Brie cheese.” Me: “I like tacos!” Him: “I’d love to know more about the Anasazi Indians. I’ve seen photos of their cliff dwellings from around 1280 AD.” Me: “I can roll my stomach forward AND backward AND sideways if I really concentrate!”

But we worked. He took me to the Arboretum for a stroll and picnic lunch. He took me hiking. Outdoorsy stuff was foreign to me. I mean, as a kid, my family visited Pikes Peak in Colorado so my mom could buy a cute little hiking outfit with matching HIGH HEEL boots, because flat boots with a tread were “an abomination.” She did not like dirt and sweating was out of the question. R took me camping and taught me how to throw sticks on a fire and roast the perfect marshmallow!

My parents moved away during my high school junior year and let me live with a friend up the street. Thank goodness they took me in. If they hadn’t, some other appropriately-aged woman would have undoubtedly snapped up MY man.

We got engaged in 1985, 5 1/2 years after we met and married the month I turned 21. He was 24 and the most handsome groom with that feathered hair and blonde mustache.

I wrote a hundred tiny love notes for him to open during his hospital stay.

The final one said, “I love that we get to grow old together.”