Sunday, May 22, 2011

Chemo Limo!

So....despite a busy week with the kids and busy week at work with a new computer/paperless system installed in the office for less than a week, by Wednesday, I was beginning to feel pretty good. Must be time to go back for more poison! And sure enough...for some reason, this session hit me hard. I had mouth ulcers by the time I reached Marietta and couldn't walk for shit by the time we got to Rosie in Atlanta! By Saturday, we realized that my knee on the leg with the injections had significant edema on one side along with the swelling and tenderness that usually accompanies the injections at the thigh. (A nifty and new side effect!!) What a mess... If you're interested in feeling rather depressed and a comradery with my situation...check out: Chemo Limo by Regina Spektor on YOUTUBE.

At any rate, the only down side of my last trip with Ruthie was our attempt to deal with some billing issues (of which there should be none) and get my last leukophoresis scheduled (which was a known entity 6 months ago!). Brent and I have been leaving messages for the people we were told to contact in billing and in the patient care coordination section for weeks with EXTREMELY minimal response and ZERO resolution! Ruthie and I thought that surely, being there, in person, we could achieve some result! But, NO!!!!! No one we were supposed to speak was even there (supposedly!!!). My leukophoresis is STILL unscheduled!!! It is to occur in 3 weeks, I have to buy plane get the picture..... We spoke with a wide variety of people. Some listened and acknowledged, but had no power. Some listened and were absolute imbeciles. Some gave info because they were so ditzy they didn't know better. Some lied to our face....without blinking. I thought someone might care. I thought someone might want to do their job caring for desperate, dying people a little better. I thought they might want to do something about the fact that one nurse was superb and others could stand a bit more training. I thought they might want to fix a system in which a social worker appears on day one...and is theoretically concerned with your mental health as a stage 4 cancer patient and lab rat...and says that they will be getting back to you with info about hotel contracts Moffitt is making with various hotels to diminish the costs incurred by these same desperate, lab rat patients.....but....who never shows hide nor hair 6 months......

Oh, well.... I think all of you who know me...feel that I am a fighter. (As you may remember, I write letters to asinine school principals with a halo drilled into my skull on behalf of children other than my own. One of whom the Red Bank principal was trying to keep out of the National Honor Society because he didn't meet her "standards" just graduated as the Valedictorian!!!!! Thank you very much!!!! Way to go Justin!!!!) Yet, I wish Ruthie and I hadn't bothered. The effort just put a damper on the Perky Petide Posse and did absolutely no good.

I do think that being a patient is the BEST training for those who care for patients. And I am happy to say, that though I haven't been perfect, I have done a pretty good job over the past 27 years in providing care to patients and their judged by someone who has walked more than a mile in their shoes!!!! I also feel that everyone administering and ordering the administration of the peptide vaccines should have to take an injection of same. Now mind you, I realize that that is NOTHING like what I and the other patients on this trial have had to endure. Having six at a time puts an incredibly different slant on it. Having to deal with the ever escalating, contralateral side effects and granulomas will not be realized with only one injection! But is a step toward reality. This is NOT like a flu shot. This is NOT a pain that is diminished with ice. This is NOT something that Benadryl orally or topically can improve. This is NOT for sissies!!!

So there!!!!! c


  1. It is a shame how universal this is -- there is even a song about it! (And Regina doesn't sound American!) Oh well, we did our best! And like we keep telling our kids ~ that's all we can do!

  2. You ARE the best!!!! Love you!!!