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
Stephanie's February 14th Update
"Progress". Cancer effects every fiber of your life in a volatile way. So no surprise, we've had a lot of ups and downs the last two weeks. Thankfully more ups than downs!
Doug has made a lot of progress - blood counts coming up which means his new bone marrow is getting to work on its own!! He is moving off IV meds as witnessed by "the pole" pics . We are day 20 of the 100 day benchmark!
You learn a lot about people at times like these. I affectionately call Doug "the beast" because he just plows through every toxic treatment with his determined eye-on-the-prize style. Somehow he still has a sense of humor. Guess chemo can't kill that ;-)
Of course having Sue Hudson and Peter Coll in your corner mean the world.
Of course he is the favorite patient on the floor and all the nurses and assistants eagerly stop in to hang out and enjoy his great energy and humor.
We hope he will have consistently high enough blood counts to come back to his newly sanitized home in the next few days and continue his recovery there! Keep those great vibes coming his way so blood counts go over 500 tomorrow
— with Douglas Parisano.
March 11, 2013
Doug's February 15th Update
Today Facebook asks "What's going on?" As I sit here in my hospital room, Sue Hudson, Peter Coll and Sandy Morrow are at the house where Sue and I live, working very hard to have it ready, clean and safe for me to return home. I have never needed before, but now I do, and these three are taking care of me in a way I can't for myself right now. I am grateful. I feel loved and cared for. Thanks so very much to the three of you, You are all wonderful, kind and thoughtful. To me you are all amazing
March 11, 2013
Doug's February 16th Update
I was diagnosed with CML in March of 2011. The doc put on a medication that works for 90% of people with CML, that drug failed after a bit over a year. Another medication was tried that works for most folks that the first one fails, that one failed too. The next best option was a bone marrow transplant, which i recieved on January 25th. The odds of that were 75% success rate. I happy to say it seems to be working, my body is producing all the white and red blood cells and platelets I need to live.
With all that being said I had face mortality for the first time in my life. I now feel confident that I am going to be around for many more years.
This now brings me to my point. Between facing mortality, giving up control of almost everything and being in isolation I learned some things about myself. Some I like, I can have a sense of humor through most anything. Some I don't like, I realized I can be self centered, it was a surprise that every other persons feeling and thoughts weren't always related to or caused by me. In other words I have some fence mending to do. I also realized how little patience I have, and how that frustrates the people in my life, I am learning patience now though, this is a crash course. I also am learing about trust, which for me at the moment means just letting go, I'm getting better at it everyday. I am learning a lot about love, too. Sometimes its a simple hug, other times its holding someone up. Yet on some occasions its being quiet and patient. Much of the time its putting myself in the other persons shoes. It could also be encouragement, sympathy, empathy, or even just some good ole common sense. The tricky part for me is knowing when to do what when it comes to love, I failed at it yesterday, even with the best intentions. It did teach me a valuable lesson and I intend to mend that fence.
To summarize, life is short and the relationships we all treasure can be fragile, so I intend to make sure I treat them like treasure, I hope you will too.
Doug P
March 11, 2013
Sue's February 25th Update
It's been a very busy few weeks! Douglas Parisano came home from the hospital last Sunday. Yay! The house was thoroughly cleaned, meaning that every wall, window, floor, and ceiling was wiped down with a bleach solution. Every piece of furniture was moved and cleaned. The carpets were steam cleaned. The refrigerator was emptied and scrubbed with bleach. The washer and dryer were moved so the floor and walls could be bleached. We have a CLEAN house!
Now that he's home, every piece of clothing Doug wears, every towel, washcloth, dishcloth, and tea towel needs to be washed every day. Doug isn't allowed to wash dishes, cook, take out the trash, or clean ANYTHING. He's not allowed to finish the painting we started before he went to the hospital. He can't drive for a month, or even pump gas for my car. He has lots of time on his hands and very few things to do with it. I, on the other hand, am very busy doing all of the things Doug can't...and it makes him crazy.
Many thanks to Stephanie Parisano McAlaine, Betty Parisano, Sandy Morrow, and Peter Coll for all of their help with the cleaning! I couldn't have done it without you!
March 11, 2013
Stephanie's (Doug's Sister) February 20th Update
What an exciting week! Douglas Parisano came home from the hospital 7 days early (woo-hoot!!) to his newly sanitized home, car, life where he can continue to recover his blood counts, ensure that his transplant takes hold, and gain strength. Today is day 26 of 100 days.
It's was made even more exciting as we watched, with goose bumps, this morning as Robin Roberts made her long-awaited return to GMA 144 days post transplant (same treatment as Doug).
Truly amazing what is possible when people are inspired, loved and driven - and I don't mean just the wonderful doctors who discovered these amazing treatments, but the patients who endure these toxic, yet potentially curative treatments, with a smile on their face and hope in their hearts. It's a new day.
March 11, 2013
Doug's Update March 10th
Facebook wants to know "whats on my mind today"
Well its 42 days since I received the gift of a bone marrow transplant and I am adjusting to life at home. I am grateful to have a second chance, even though its sometimes challenging to live within the restrictions that come with no immune system, but I am adjusting and learning with some help. Its great to be home, I love our little house, its home.
I am trying to make good use of the time instead of just counting down the days to 100. I am learning how to relax, its a new concept to me..lol Everyday seems to bring a new learning about myself or someone or something in the world around me.
I also want to thank all of you for the amazing support you've given me, it make a world of difference. Thank you all.
By the way I had rice chex today, just like I wanted.
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March 2, 2013
April 12th FUNdraiser, Live Music, Dinner, Drinks!
An Evening of Fun for Doug Parisano featuring Live Music by Late April
Friday April 12, 2013
6.30-10.30 pm
King of Prussia Fire Company
170 Allendale Road
King of Prussia, PA
To join us visit this link: http://bit.ly/ViZQ6A
http://www.helphopelive.org/find-a-patient/profile/dsp_patient_event_registration.cfm/patient/8AF4DF0A-9AB0-F447-5191A17C371ED17B/event_setup_summary_id/162
