A GLITCH IN THE TREATMENT PLAN
I arrived at my appointment for chemotherapy in Porter Ranch at 0938 (I was a little late). I went through the regular questionnaire and, of course, noted my rash. When I was in the chair the questions about the rash came up and I told the nurses that it was the same rash on my face as after the first treatment but, it was worse. I showed them the picture, from my cell phone, I have posted here. All were aghast! Collette asked what I was told by Dr. Palmer when I came in during the first bout and what did I use on it. I told her that Dr. Palmer wasn't overly concerned (it had faded by then and was only my forehead that was red and ugly). My concern, at the time, was shingles. It was confirmed that it is not shingles, thankfully! I had tried everything over the counter I could think of and a few suggestions; Benadryl tablets, Benadryl cream, Neosporin, Desitin, Vaseline, Caladryl and hydrocortisone. But, today the nurse ran and got Dr. Glaspy and I showed him the picture and he was not happy. He thanked me for taking the picture and told us it was not from the Taxotere but from the Neulasta. It's called Sweet Syndrome and he cited a 1988 medical journal (this is when it was first written about). Dr. Glaspy said there would be no more Neulasta for me. I was immediately concerned about pulling the injection that helps me fight the dangerous bacterial and fungal infections I am susceptible to without it. Dr. Glaspy said it could cause permanent scarring and each time it comes back it is worse. He told the nurses to go on the web and pull up images. It is scary! I balked a bit, anyway, and told him I am okay with the scarring if the treatment outweighs. He said it didn't. He told me he took an oath to not hurt his patients and this condition is definitely hurting me. He told me to apply for SSI and he will fill out the necessary related paperwork. My work conditions are horrible and this is why I went along with the neulasta in the first place. There is no way I can work in this environment and not get sick. If I get sick and run a fever I have to go to Dr. Glaspy immediately and get a blood test done. If my white blood count is low I will be hospitalized and given intravenous antibiotics. A friend at work had sent me a picture of my work environment to show the doctor at my initial visit but I can't find it now, I think I deleted it. But, imagine a conference room filled with picnic tables end to end in rows of 5 with each row having 8 picnic tables shoved together. Each table has a computer and stackable paper trays plus whatever we need to do our job; stapler, organizer, etc. So, everyone is crammed together, the windows don't open and the air circulation is terrible. Just recently the air conditioning vent was reconnected so we could have some air - but, it doesn't start running until a couple of hours after I get there at 0600. We have a few people in there that are chronically sick. One to my right and one behind me. With the sneezing and coughing and fans blowing there is no way I will be able to not get sick. I requested to work from home long ago and nothing has come of it. I sent my coach a text after my chemotherapy and explained the situation and, now, its imperative that I work from home. If we had the ball rolling my home visit would be done and all the things I need to get started would be here. But, nothing has been done. If approved, it will take weeks to get me underway. So, I have to apply for SSI. I went and did the online application for social security. Now, I have to call and make an appointment for SSI. I would rather work from home than collect SSI or Social Security. But, the VA may not make that happen. All the work is virtual now that centralized mail is in full swing. I can do everything from a remote site - my home!! But, if not, I will stay home and work on my Master's classes. I really need to spend more time on this, anyway. It's important to me to do well and pursue this line of employment. I, do, feel terrible about causing problems at work. I know my coach and my co-workers are depending on me. I really love what I do and I do everything with a conscious effort to help the veteran. I pass my work ethic on to others that I train and to those that aren't, quite, doing that. Some have been there so long, and have no military experience, that they treat it like a job - just paperwork. That "chaps my hide" as Scott would say. We'll see.
As far as what this means for me in regards to symptoms after chemo, we will see. I imagine I won't be in as much pain over the next three days and I won't get a face rash.
I still have the same amount of thinned hair. I didn't lose any more after the last round. But, Dr. Glaspy said it would all come out, just slower with me for some reason. I said, no, it won't and he chuckled and asked if I wanted to make a bet. No, I don't. LOL.
Next time I go for chemo I won't have to have a much in my premeds. I hate the Benadryl drip. It puts me to sleep and I always wake up startled. I hope I am not yelling out like I do at home during my nightmares - or, gasping for air.
I really need a hug :(. Joe is here - been here since last Saturday but we haven't seen much of him. He's at work all hours of the day. He has been trying to get the air conditioners working and fix the brakes on his car so I can use it. He's gone around the clock and didn't, even, have time to bring me my jacket while I was in chemo. He leaves, again, tomorrow morning. We bought him some Ralph Lauren cologne for Father's Day. He likes it. We aim to please.
Still navigating my claim with the VA. It's been in for almost a year and bounced around from LA to Oakland, to South Carolina, to LA, to Oakland and has had nothing done with it. Not even looked at. I added contentions (including breast cancer) and uploaded a bunch of evidence. I'll add more. Make it as easy as possible for the VSR and the RVSR to do his/her job. All the evidence is, already, in their laps, but, I sent medical documents anyway with post it notes. NOW JUST LOOK AT IT, ALREADY. How timely that I have wait issues with VA; my claim, my situation with the mammogram, and the Congressional hearings are in full swing. I reported my health care debacle to the Chairman's office in Florida and followed up with evidence. I told others about the link and I hope they follow up, too. If no one knows there is a problem it can't get fixed.
I'm done for now....
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| Sweet Syndrome |
And just for fun...Natalia keeps it me on the better side of everything - just another day like any other day :) :
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