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dj’s Story

Welcome Friends & Family. Being a patient is more than a full time job and I'm trusting that this site will allow me to keep everyone updated these next few months. Having battled the f-nhl beast for over 10 years and learned much, I feel I'm in the best hands possible here in Seattle at SCCA aka The Hutch. Cheers, dj

Hello Dear Friends,

Our dinner theather night out was awesome!! Thanks SCCA & ZinZanni for a wonderful show and an outstanding 5 course meal. I've not eaten so much in one setting for weeks. Of course, I ran out of steam and DH had to finish my steak ;-)

Well, I got my month off - though not quite in the way I expected. The spleen issue may be fungi, they're not sure, and I'm spending a month with anti-fungal infusions. Thankfully, I can do these at home and don't have to go into the clinic every day.

There is a small blood clot in the Hickman so today I get to learn how to give myself injections -ewwww! But then, I won't have to go to the clinic twice a day for them to do the deed.

My energy is recovering and I've been walking lots more. Will start yoga classes next week. I do so need to use every bit of this month to recover.

Thanks for all your good wishes, they are so helpfull. Hugs dj

Latest Journal Update

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Onc visit yesterday went very well.  Didn't get the report for I've lost interest in the details for the time being.  All numbers approaching normal and no infusion requirements.  Yea!!  We discussed my lightheadness and it's due to neuropathy of the nerves that cause blood vessel contraction ie the blood doesn't get pumped around fast enough.  Said it would improve with time.

He wan't to go two weeks without infusions before he'll consider taking the hickman out.  I'm so looking forward to that.

Was at the clinic at 7:30 am to get my line tpa'ed.  Then a 2 hour wait for the tpa to work and get the blood drawn, which gave me time to eat breakfast at the Bistro and take my meds.

Asked if I'd ever get to me O. Press and my onc will be going on vacation soon and Press may be taking his patients.  The doc's rotate monthly on the transplant service so I've been attended by several.  Wish I could remember their names ;-).

Anyway, was back to the apartment by 12:30 and had to take a nap.  My energy level is no where near normal and it's hard to be patient.

Hope all is well with you.  dj