Wow! I feel like a big loser poopy head for not writing my 60th post sooner. I strongly dislike excuses, so I won’t give you one. I’ll give you 3. It’s exceedingly difficult to write when you’re: 1. 90 feet underwater 2: flying towards earth at 120 mph and 3: clinging to an ice wall with axes in your hands.
I’d like to introduce you to my new mantra: YOLT – You Only Live Twice. YOLT is the strangely intense distant cousin of YOLO. I am committed to making the most of my second chance!
I’ve always stored a bucket list in my cerebral cortex, editing as I go, but since I’ve been in recovery mode with limited cranial function, I’ve kept a written one, checking off my current ‘to do’ items once they are crushed. I plan on making many more x’s. Some items are already scheduled, others are in the works, and I’m confident the remainders and any others I add will be conquered.
Rex achieved something I wish I could add to my list. He voluntarily saved a stranger’s life! Rex made his stem cell donation at City of Hope on November 18. For the five days leading up to this monumental day, he had Neupogen injections (3 per day) to move his stem cells from his bone marrow to his peripheral blood stream. He had to alternate needle placement from arms to legs, because of the soreness that set in. The drug made Rex feel nauseous, but he pushed through. A volunteer nurse met him at his fraternity annex, “Severance” or more affectionately known as “Sev” or more realistically known as a terrifying, yet lovable 3-storey pigsty/lean-to/hovel/shanty/rattrap just off USC’s Fraternity Row. I believe said nurse, bless her heart, showed up in full haz mat attire after the first visit scared the sh*t out of her. It’s hardly a place you would consider a good venue for sterile procedures to take place. If you saw the movie Animal House, then you are picturing something wayyyyyy tooooo posh and pristine. Regardless, Rex and the nurse survived the pre-donation shots and the big D day was upon us. We arrived at 7:30am and Rex was greeted by Monica, his wonderful Be The Match donor coordinator who had been guiding him through all of his preparation. He settled into his bed and was hooked up to a centrifuge via an IV in each arm. He was given his last two Neupogen injections and the mighty machine began to draw blood from his left arm, spin the stem cells out and deposit them in a plastic bag, then return his blood to his right arm. This went on for about 6 hours, until there were enough cells to transplant into the patient. From there, the bag was put on ice and couriered by a Be The Match volunteer to the patient’s hospital in Europe. Todd and I were by his side, as were good friend, Jared and his Uncle Leason, my brother and donor, which made it even more meaningful and special. While Rex was doing his life-saving at City of Hope, a reporter from The China Daily News came to interview him in an attempt to spread the word on needed donors in the Asian community. A CBS Channel 2 News crew was also scheduled to make a visit, but the producer suddenly changed the plan, and sent them to cover an explosion of some sort instead. Rule #83.7: Explosions trump stem cells. Up until this point, we had only heard that the mystery patient was a 65-year-old man living outside the United States. That day we learned that he was in Italy. We are hoping to get an update on his prognosis, and we hope to be able to meet him someday, although the transplant laws in Italy are quite restricting on donor/patient contact. Rex also agreed to participate in a special City of Hope stem cell research study by donating his stem cells that were left in all the tubing. I am beyond proud of Rex for following through on his donation and literally giving himself to a stranger in an attempt to save the life of this likely husband/father/grandfather/brother/son/uncle/friend!
Just prior to Rex’s donation, the Orange County Register came to our house and interviewed Rex, Leason and myself for an article that ran on November 11: http://www.ocregister.com/articles/joselyn-641636-marrow-bone.html
Rex’s story was also picked up by ABC Channel 7 Eyewitness News. Reporter Greg Lee contacted me literally as I was in my driveway about to jump in the car bound for City of Hope for my monthly meeting with a needle and Dr. Fantastic. He wanted to interview Rex and me that afternoon for the 5:30 evening slot. I worked my phone all the way to Duarte, tracking Rex down, and making a plan to meet once again at his beloved “Sev” with Greg at 1:30pm. Upon arriving at COH for my 11:30am appointment for AFBT – Another F-ing Blood Test, I became nervous about the time, because the line for lab testing was longer than a snake’s fart. I somehow got through that mess and made my way to the Hemo Clinic for my appointment with Dr. F. This is where my momentum came to a screeching halt. Waiting and more waiting. Bullet sweating and more bullet sweating. FINALLY I heard my name called, and Todd and I raced to our familiar room #1. Dr. F was – of course – fantastic, and my counts were boring/normal/awesome. He ordered my next round of booster shots as our watches were screaming at us that we had to leave right then and there if we were going to make it to our interview across town. We waited. We waited some more. We inquired and were told that it was going to be another 10-15 minutes. We had to bail. I left without my boosters! We flew down the 210, 605, 10 and 110, careened around the corner on two tires and spied the news van parked in front of the sty.
Rex, Greg and Rex’s frat bros were shooting the sh*t, but Greg was definitely ready to go. He had a deadline. The interview went great all except for the unfortunate fact that I had left that morning wearing a heinous outfit, no make-up and an idgaf hairdo. Greg placed me looking directly into the afternoon sun, so my acutely sensitive eyes were squinting and crying on camera. What ev ~ Rex nailed it: http://abc7.com/health/woman-saved-by-bone-marrow-transplant-sets-out-to-pay-it-forward/404673/
City of Hope posted our story on December 12: http://breakthroughs.cityofhope.org/stem-cell-recipient-joselyn-miller
On December 14, I celebrated my 2nd re-birthday with Todd and a disarmingly serious Weihnachtsmann (Santa) at the Christmas Market in Berlin 🙂 No child was within 100 feet of this man. We had a great time sampling hot mulled wine, sausages, schnitzel, and strudel. We had an even better time concocting a language all our own, based on the Germanesque sounds that surrounded us. We got some amazingly quizzical glances from the local Berliners from such beauties as schvassesteigel weichtendorfferhopfen eissensweissenkrausendortenmunder. Go ahead, I’ll wait, say that out loud. It’s f-ing wunderbar! If anyone has anything relatively close to a translation, please let me know.
The New Year was celebrated with my family of 10 in Banff, Canada. A great time was had by all in this winter wonderland. Sleigh riding, dog sledding, snowboarding, snowshoeing, ice climbing, skiing, tobogganing, bowl game watching, snowball making, and powder volleyballing were just some of the activities that kept us out of trouble with the mounties.
UPDATE: Blood counts are steady and normal. Skin and lip fare ups are decreasing in number and severity. Ya, blood and skin are kicking ass, but Todd and I have noticed a major decline in my navigational skills.
I once flaunted the apex of human gps abilities. I could find my way in and out of the most confusing effed up labyrinthine neighborhoods. Blindfolded. I had an undefeated inner north arrow. I could see your south southeast exit from the 3rd roundabout and raise you a second from the right fork at the blinking yellow light just after the dog leg u-turn. I get utterly disoriented with a detailed map in my hands. I am now reduced to following Todd around. Yes, the man who gets lost in the personal hygiene aisle.
My eyes are now experiencing fewer problems, thanks to several drops I take daily. I had cystoid macular edema for a few months, which is when fluid or protein deposits collect and form cysts on the central area of the retina. This is the most common cause of blindness in people with diabetes. Luckily for me, it went away after I used Dr. K’s magic drops. I am now looking (blurrily) at a LASIK-like 5th eye surgery, which we hope will be the end of this eye shituation. That’s right, I said shituation 🙂