Monday, June 8, 2015

Leukemia Cup Regatta

I SAILED !!

My UW Med Center Doc's - aware of the significance of being this years Leukemia & Lymphoma Society's appointed "Honored Skipper" with a speech scheduled for this well-known event - graciously and gladly did everything in their power to get me out of the Hospital in time to make it on Race day - Saturday June 6th. Every med-team was involved in this endeavor, and I profoundly thank them ALL for being sooo utterly Awesome ! We did it !!!  YAAAAYY !!

It was somewhat ironic and bittersweet that late Friday afternoon I wrote my Regatta speech from my hospital bed. Thurs afternoon they had pulled my Hickman chest-line out as it was now definitely compromised, having been hospitalized twice in past 3 weeks because of it. After two unsuccessful and truly painful attempts to insert a new PICC line in my upper left arm, we had to break sterile procedure, bring in more equipment and begin all over again on the other arm. Having no other option we had to switch to the right side. Definitely not the preferred choice as I am right-hand dominate. I can't convey to you just how utterly miserable this whole experience was... Just for a simple PICC line !!

At 7:30 pm Friday evening I finally rolled out of the hospital homeward bound ! The following morning I got my Piratey arse down to the Marina. Talk about cutting it close. Whew !!!!  I was simply thrilled to be sailing with Ken & Danette on their ultra-sleek sailboat, a Hanse 455 ironically and rather appropriately named "Sick Day" (...as in "you never saw me") and meet our simply Rad crew !! What a stunningly GORGEOUS day it was !! I'd like to beleive my speech went off with only a stumble or two, and perhaps a few teary gulps as I spoke. Several people stopped me after to hug, encourage, share their journeys....all truly welcome. = ) But I truly believe the point was brought home why we were all there and how truly important it is to keep funding LLS, keep the fight going... Thank you to all whom donated. I am proof your donations make a profound difference. For real !!

The day was Simply Spectacular !!! Fair winds blew as we sliced thru the water at 9.1 knots, powered only by the breeze, skillful sail trim & helmsmanship (thank you Ken & Dave). What a GLORIOOUS way to get out of the hospital. Yes, that is me, smack in the middle. Can you tell ???



And so back to the present. I still need an IV central line. I am still blood dependent. Shockingly, I required 3 different bags of red blood & 1 of platelets while in hospital. I am likewise self administering IV antibiotics at home for the next 2 weeks post-discharge. Being right-handed this presents a bit of a problem as I live alone, am stupid with my left hand & will have a degree of difficulty flushing the line daily & keeping this PICC thing dry while showering. I was told I would likely have another Hickman implanted, as my new Hem/Onc told said a further Transplant is not necessarily off the table yet (HUH !!!!). She believes I am having post chemo recovery issues producing accepted Normal levels of stem cells and blood cell production because the actual bone marrow environment itself (the Stroma) has been significantly damaged. I question (and SCCA has aknowledged the track record...) the last dose of toxic G-CLAM chemo. We are also pursuing "research" level gnome mutation sequencing due to my odd relapse. However she is willing to wait a little bit longer to see what happens with my blood production. I am still immune compromised and have very low blood counts.We have not even approached discussing transplant logistic yet. So let's just keep our fingers crossed and I'm holding my breath my/Bruce's Good cells will continue the recovery process properly.....
To Life ! Live it Boldly !!!
K -

Wednesday, June 3, 2015

2nd ER Visit, REALLY ??

Yes. Really !!  Yet another ER visit late last night has unfortunately led to me being admitted...Again...to UW Medical Center. Same ole same ole. Headache, fevers, punky feeling. This time I didn't wait for the Rigors to appear. I wised-up & got my butt down to the ER with Kate's help. Same floor, same Montlake Cut view. What the hell ???

Word just back that the blood cultures they took last night are growing out another rod gram-negative blood infection. Huh ? How can that be ? Did the one from 2 weeks ago just linger and hide. Neutrophil counts dropped. In fact all blood counts dropped since the last hospital discharge. That's been a bit disappointing too. New SCCA HemOnc on board now. Am pleased with this change so far. Med-team here at hospital is again considering pulling my Hickman chest line out, but is holding out hope we can still treat infection without going that far as I am still blood transfusion dependent.

Making matters even more pressing.....the Leukemia Cup Regatta is on Saturday. Not only have I been chosen as one of 2 Honored Skippers this year for this very important event, part of a national campaign for the Leukemia & Lymphoma Society, but I am scheduled to speak during the Skippers meeting...rally the crews. And....all of you whom have supported me with donating funds to this fantastic org....  well crap, I don't want to let you down. What incredibly lousy timing !!! However, my med team is aware of this and has promised me they will try to bust me outta here in time. Cross fingers folks !!