Forget rolaids! I spell relief G-e-l-c-l-a-i-r

One of the more "fun" parts of chemo is its ability to make you miserable in ways you never before thought possible. So it is the case with this new chemo I have been getting: Erwinia. Within a few hours of getting the first shot, I started to feel funny. My face swelled up, my cheeks were flushed, and in general I just didn't feel right. As I have gotten subsequent doses, the situation has deteriorated. I shaved several days ago (I think it was sunday) and had some razor burn. I still have the razor burn. It just doesn't want to heal.
Chemo has a devastating effect on the body, even at its most targeted. The chemo I take is aimed at killing cancerous white blood cells. At the same time, however, it kills good healthy white blood cells, and it also kills any of the body's "fast growing" cells, particularly those in the Mucous membranes.
The worst part of the killing spree has manifested itself in my mouth. I'm not sure if you can tell by this picture, but my tongue has swollen to about double its normal size and has these nasty lesions on the sides of it. The lesions are VERY painful. I had beern taking Oxycodon to manage the pain, but for some reason the Oxycodon was making me super agitated, even wired, and on edge all the time. I couldn't have been much fun to be around.
Because of my hyperactivity and loopiness, I stopped taking the Oxy after getting barely any sleep for the past few days. Last night I was able to sleep more or less all night long without tossing and turning. But when I woke up, it was there waiting for me: Shooting, stabbing, bone-pulverizing pain.
When I was in the hospital this summer there my mouth got a little bit sore, but nothing like it is now. Then I could just use the Peridex mouthwash and a mycelex troche(kind of like a lozenge) and my mouth would immediately feel better. That hasn't worked for this new problem. On Tuesday I was at Roswell for an Erwinia shot, and told Linda the nurse practitioner about the pain I was having. She gave me a box full of Gelclair samples to try. Gelclair is a gelatinous medicine that, when swished around in one's mouth, creates a protective coating over the sores so the exposed nerves don't light up like a painful Christmas Tree. It also is supposed to help the sores heal. I had tried the Gelclair in the clinic, and it worked great. Unfortunately that was the day I had my super low platelet count of less than 5000. After three bags of platelets and at least 4 hours of getting them, I was in a HURRY to get on the road and get home. Predictably, I left the samples on my tray in the clinic.
In even more pain on Wednesday, I called Roswell and asked Linda for a prescription for the Gelclair. , which she quickly ordered from Upstate Pharmacy. When the Gelclair didn't show up on thursday, I called upstate. THEY HAD NEVER SENT IT. Apparently the size or dosage or something wasn't available in its complete form, so instead of sending what they had, they sent nothing at all. Worst part was they didn't even tell me or the NP, so neither of us could pursue the medicine elsewhere. If I had known, I would have had the Vestal Target Pharmacy order the stuff, and would have had it by Thursday. When I called upstate on Thursday wondering where my stuff was. the lady on the phone said, "Well, when we send fedexes, we want to make sure we've got everything." What that means to me is she was worried more about the $20 Fedex package than relieving my several days of agonizing pain!
This may be the last prescription I ever fill from Upstate Pharmacy . I just can't tolerate an organization with that little of a clue.
Anyhow, it all turned out OK in the end. Di and I drove up to Roswell today for another Erwinia shot and the Vincristine, and a whole case of the Gelclair, probably 100 doses, was waiting for me at the nurses' station. I just used some before writing this blog entry, and I've got to tell you the stuff is sweet, sweet relief. Finally!