You may have heard this saying, “An individual doesn’t get cancer, a family does.” Well now, we’re sad to report, our family has cancer. Two years ago, Doug was diagnosed with Chronic Myeloid Leukemia (CML). The disease eventually became treatment resistant and Doug was told that his only chance at a healthy life was to have a bone marrow transplant.
March 11, 2013
Sue’s February 10th Update
It’s been a very busy two weeks for me since Douglas Parisano received his bone marrow transplant. We’re at Day +15 and I’ve been visiting every day, but for Doug, the days drag on, melting into one another…monotonous and tedious. He is tied to an IV pole and trapped in a 12 x 12 ft room which is crammed with so much furniture and equipment that there’s barely room to walk. He has a stationary bike that is his only option for physical activity and he’s going a bit stir-crazy.
As expected, when his blood counts dropped, Doug spiked a fever…103.5 degrees F…from some kind of bacteria, probably something perfectly normal that a healthy immune system would have taken care of in an instant. Instead, Doug spent the night shaking harder than either of my kids did throughout their childhood illnesses. It was unnerving, but he was quickly given antibiotics in addition to the anti-virals, anti-fungals, immuno-supressives, and all the other meds he’s on. There are so many at this point that I can barely keep track…and they’ve even taken him off of a few that he was on earlier!
If you go to Doug’s profile page, you’ll see that his sense of humor is still intact. He’s even resorted to holding androids hostage and playing games with the food service staff. From his posts, you’d think it’s all fun and games, but what you don’t see is the endless stream of nurses and CNAs traipsing in and out of his room at all hours. It’s rare for him to get even four hours of uninterrupted sleep, and at this point, his sleep patterns are so disrupted that it’s difficult for him to sleep, even then.
Doug’s lifelong love affair with food has also suffered. Immediately after chemo and radiation, he had a few days of nausea that were easily controlled, but now, his senses of smell and taste are changing and nothing seems appealing. The doctors warned us that one of the biggest challenges would be for him to take in enough nutrition, but we thought we were past that hurdle. We were wrong. It doesn’t help that HUP’s food is so poorly prepared that it’s almost inedible. It seems like the only safe things on the menu are French toast and fresh fruit.
Chemo and radiation have left their marks in another way, too. Doug is dealing with what’s commonly called “chemo-brain”, so he’s a little bit forgetful and it’s hard for him to concentrate for long periods of time. It’s frustrating for him and others, but thankfully, it’s only temporary. It’s a challenge for me to remember that he forgets sometimes, so I often have to remind myself to be more patient than I normally would be.
As difficult as all of this is for Doug, he is faring much better than the other patients I see when I go to visit…and that is a blessing AND a curse. If he didn’t feel so well, staying in the room might not be so difficult. As it is, the room that keeps Doug safe is also his prison. I guess there’s no good solution to this problem, but your cards and letters make a huge difference. Every card that has arrived is displayed on where Doug can see it and every Facebook message has been read. Please keep them coming. They really do make a difference.
March 11, 2013
Doug’s February 12th Update
Today facebook asks” how am I feeling?” To which I reply pretty darn good. I just got back a critical blood count #, absolute Neutrophil count(anc), it is 220. That means the graft is starting to take! It also means I am close to getting out of this room and going home, I miss home.
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March 14, 2013
HI DOUG! WE WERE IN THE SAME SITUATION YOU'RE IN, ABOUT 6YRS AGO WHEN MY SON TOOK SICK. I WILL KEEP YOU IN MY PRAYERS AND I WISH YOU A SPEEDY RECOVERY. ALL BEST WISHES, JOANNE DIEHL IN RESERVATIONS AT SCOTT HONDA.