Tuesday, June 25, 2013

Update 06/25

Apologies for the lack of any kind of clever or helpful title.  Tom's hanging in there. He just had his 2nd of 5 intrathecal chemos yesterday.  It was definitely a doozie.  They should take about a half hour if they go superbly well and this one took about an hour and a half.  On top of that they also had him stay in an unused xray room laying flat for about 20 minutes (whereas last week they allowed him to walk out and go home) so it must have been rough.  He said they were just poking around constantly, sounds horrifying.  Needless to say, he's ended up with the excruciating intrathecal headaches to go along with it which leave him a bit laid up.

On the other hand, the doctor said everything was looking a-okay for Tom on Monday.  He told Tom that if he keeps it up then the six month marker being a big one should look good.  He said Tom might even be allowed to travel in three-six months time!  So that was exciting news.  Seems very pleased with him.  Apparently the six month post transplant is a big marking point as right now they'll be watching him closely for chronic graft vs. host as opposed to the acute graft vs. host.  Tom is doing very well though, he's definitely in the top of his "class if you will" along with another couple of people. I wish we could say the majority, but there have been some rather upsetting cases along the way.

The lady I had mentioned I'm sure in previous blogs who came along and sort of smashed everyone's records in terms of getting out of the hospital fastest, I may have also mentioned that she was experiencing some neuropathy (paralysis)... Well, apparently after it (the neuropathy) had consumed her entire body and has now also left her without her sight, she's been to UCSF and they've also concluded that it must just be from some of the meds that were used (so "luck" of the draw really) and they're just hoping it's temporary and will cycle through.  She is currently hospitalized.  Keep her in your thoughts.  The nurses told us they had another patient have that last year and he's just come around having regained it back and is doing therapy, etc. So hopefully it will do what they said and just cycle through for her.  Poor thing.

On a brighter note, tomorrow evening we're going out for a meal with Tom's "birthday twin" (the elder lady who got her bone marrow transplant the same day as Tom).  She's also doing remarkably well and will be soon going back home to Modesto (yay for her!!!), but her daughter who's been staying here in Sacramento with her as her caretaker will be going home (to Modesto as well) on Thursday when the other daughter/grandson arrive to take over.  So we wanted to get in a little celebration dinner to celebrate the two of them as we've grown close with them over this journey.  They're so wonderful! She's in her late 70's and she is just full of life and they're such a joy to see in the infusion center.

I think that's basically it for us around here. Things are going well and we're both kind of getting back into the swing of things. Hopefully in the next couple of weeks I'll be able to make an official job announcement on my part.  Tom is also looking to volunteer with the leukemia and lymphoma society so we'll see what comes of that.  Though nearly half way over, this year still seems to hold a lot of opportunity!

Have a marvelous rest of the week!

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