So I'm not allowed to be alone AT ALL during this whole process - I mean, I get it and all, but it's really inconvenient. Mom just left for the airport in a taxi at 3pm, and Gus is stuck in traffic on his way here, so I'm in the lobby of family housing (like a good Hopkins girl) sitting on my computer. I feel like a baby - there should be a big "babysitting" room for us IPOP patients who need to be watched. Then we could all toddle around together and maybe play with some colorful plastic blocks before snack and nap time.
I've come up with a new mantra - ACCEPTANCE & PATIENCE. I'm accepting this crappy situation and then being patient with the treatment. So today when they told me "Zero neutrophils," I said, "Okay," and moved on. My white count is way up to 1,400 (it jumped quite a bit) and the neutrophils have to be on the way. I've even been having bone pain like I mentioned yesterday, so hopefully they're brewing in there. And I have a new transplant date - May 5th. Which means I'll be admitted around our anniversary (April 27 will be 3 years) and stay for about a month inpatient before doing this whole IPOP thing again.
And I met a really interesting dude today while waiting for my CT scan/chest x-ray - he was in his 60s and has had 2 bone marrow transplants - and he looked fantastic. He was totally juiced on steroids (they prescribe Prednisone to combat some of the symptoms that come along with the transplant and GVHD) and wouldn't shut up for a SECOND, but he did have some interesting stuff to say about the whole process, so that gave me even more hope - if this dude is 62 and looks good after 2 transplants (I won't get into why he had to have 2, that's another story entirely and hopefully will NOT apply to me), I'll look/feel fantastic after mine is all said and done. I mean, I know I will anyway, but it was just reaffirming.
In other news, we've raised $1,068 for Light the Night! I can't believe it! We have to raise a minimum of $2,500 for the entire team, but I have a goal of $5K and I think we can do it. While I haven't taken advantage of all of the Leukemia & Lymphoma Society's services yet, I've talked with them and they're amazing, helpful, and really nice. It feels really good to know that we're helping such an important and great organization - I'm really proud of us and I can't wait to walk this October. There's unfortunately another glitch in the system and I'm not receiving notifications when a donation is made, but THANK YOU to everyone for donating!
I guess that's it for now - but at least today's update is better than the last one.
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Jess, You continue to be an inspiration to me. In spite of the hardship and the difficulties that are dealt you, time and again you come back with the motivation to persevere. I couldn't be prouder of the little girl we named after my mother Jane. Knowing you from the day that you were born, watching you grow up and seeing the day that Daddys little girl walked down the aisle made me reflect on how wonderful you are and how lucky we all are to have you guiding us through this awful experience. I'm ready to come back to be with you, perhaps when you are back in the Hospital for the Transplant. We can watch House together and I'll run for the smoothies! DAD
ReplyDeleteI can't say it better than your Dad - you're an inspiration to all of us! Hang in there, We're all pulling for you and your neutrophils!
ReplyDeleteDear Jess,
ReplyDeleteI want to hear that you're still full of fighting spirit.
That's what's going to get you through this!
This blog of yours could be turned into a book someday that could help other patients like yourself to cope.
Published (and I could probably help with that), it could be an enormous help to others.
Meanwhile, I'm glad you put out the word about not sending your stuff via UPS. I, too, have a little stuffed kitty to send to you and it's going to go via the US mail.
Keep up the good work!
Love you lots,
Grandma
Jess, We are all sympathetic with the emotional turmoil you are going through with the unfair blow life has dealt you. Your pain is shared from Milwaukee all the way up to Wausau as we monitor your progress. You are a strong willed person and will persevere to defeat this illness and put it behind you as you move forward in life. Concentrate on manufacturing those neutrophils!
ReplyDeleteJess - all I can say is GO NEUTROPHILS! Stop loafing around and get in there and do your work.
ReplyDeleteI sent a loooong comment yesterday. Somehow this damned machine knows when I send something long because after I preview it and tell it to post I get this message that I am not signed on and then the message is lost. Puleeze!!! After all this time! Anyway, to briefly recap the message - you are an inspiration to all of us. You are handling this s--t with so much grace, humor,and maturity that I am in awe of you. I've got 40 years on you (as of tomorrow)and I don't think I could do it as well as you.
Hang in there - we love you.
Aunt Myra & Uncle Don
Talk about patience... remember when we had to find parking at White Flint during the Christmas Season? Awesome.
ReplyDeleteThat was from Julia
ReplyDeletehey girl! just saying hi...compare this to busytown tech NEVER ENDING.....lots of patience and the occassional loss of sanity and crying...and when it is all over, you will be soooo much prettier than that
ReplyDelete