Saturday, March 17, 2012

Adventures in the Cancer Infusion Center: Real Live Support Group

Many of us are fortunate enough to have loved ones of all types who recognize our limitations and support our ventures in overcoming them.  H.K. is one such phenomenal human being.  But in the end, there is nothing like talking to the MS patient in the infusion chair beside you for two hours; he with his Tysabri and you with your Remicade.

Mr. Jones was a happily married father of two kids in college.  He was, without question, the most talkative person I have ever met in the infusion center -- and although creepily Michael Keaton-looking, the youngest besides myself.

He was diagnosed with MS when his children were 9 and 11 years old, and took advantage of every feasible route to being able to keep his job and contribute to supporting his young family.  Last year, with his kids finally moved out of the house, Mr. Jones had to retire (there is no way the guy was over 45) due to the cognitive irregularities and physical strain he suffered from MS-induced lesions.  He started Tysabri treatment, and I met him today during his 14th infusion.

Interestingly, Mr. Jones brought me into a conversation with his nurse about recent numbness in his limbs (a side effect of Tysabri).  He was elated to inform me that he has never fallen, because when he notices he is walking funny, wherever he is, he sits.

I was regaled with stories of other MS patients in his support group who are confined to wheel chairs and whose spouses left them because they could not take the demand.  Who fell out of their wheel chairs trying to get out of their houses because their adult sons (yes, plural) could not build them a plywood ramp... or help them cross the threshold, evidently.  I was brought to the verge of tears several times.

He was visibly perplexed at my being in graduate school.  "Dude, aren't you totally exhausted all the time?" he entreated, "how to you think clearly enough?"  We addressed each other as "dude", which I thoroughly enjoyed.

"Well -- hah -- I am, and I don't really.  Especially during exams," was my reply.  And it could not be more true.

Being surrounded by other graduate students is amazing in many ways, one of which is that I feel completely normal in their company.  The caveat, of course, is that I begin to wonder why I am not acting so normal.  Why am I not up for a study group until 2am?  Why am I not up for going out to dinner on a Wednesday night?  I tell them that I need to spend time with H.K., which could not be more true.  But I don't tell them that I am impossibly wiped out from the day and I can't think of anything but eating and sleeping.  Omitting the latter excuse from my responses makes me forget that I'm not just being the troglodyte homebody out of lack of interest... I'm being a troglodyte homebody because I'm not healthy.

This is not to say that I'm not doing incredibly well.  Sans the blepharitis, nausea and exhaustion I am healthier than I have been since I was 10 years old.  Mr. Jones reminded me that I am legit.  He also reminded me how fortunate I am to be doing so well on Remicade.  And he reminded me how phenomenal is my spouse.  I couldn't feel more honored to have met him.  Thank you, Mr. Jones.

1 comment: