Another "Newbie"

Judy.2 said:

Hi, Ratface...
Yes, things
Hi, Ratface...
Yes, things are going well for me. My treatment went as follows: Needle biopsy in lymph node, biopsy on base of tongue to determine site of origin. Overnight stay, having pic and peg inserted, and also another heart test that was required when I signed up to be part of a trial study. Soon to follow was six weeks of IMRT, twice on Fridays. During that time I received two treatments of cisplatnin. I was hospitalised shortly after my first chemo treatment, for about a week. Then, the last week of radiation, I was also hospitalised, and stayed there till the docs felt the radiation was "calming down". About three weeks. I had quite a burn, covering my entire neck & upper chest, with the worst being on my left side. (same as affected lymph nodes). My ENT had told me going into all of this that as soon as I healed up enough, he would be doing the disection. So, in late January 08, I had around 16 nodes removed, and all tested clear. Almost a full month later, after my ENT had felt the healing was excellent, I felt a sharp pain in my shoulder area. It turned out I had a raging staph infection, that had apparently not been able to rise to the surface soon after surgery, because of the radiation damage to the tissue in that area. Back in the hospital I went, for nearly a month. I was told that this infection put my life in more danger than the cancer treatment did. The doctors were quite impressed with it, and it is really rare for an infection to stay "hidden" like it did for so long.
I don't know if it was the radiation treatments, or the infection, but I have a rather hugh case of radiation fibrosis, affecting most of my neck, and left shoulder. I have been in PT for a year now. My shoulder is coming along well, my neck..not much change.
I've had CAT scans every 6 months. The only PET scan I had was before I started treatment. I believe they feel the fibrosis would cloud the PET scan..possibly causing false positives.
My ENT scopes my throat every 3 months, and is extremely happy with what he sees.
I do have swallowing issues to deal with, but I consider myself lucky. My taste buds have returned quite well. As many have said here, the sweet taste seems to be the last to return.
My saliva seems pretty good, too. I sip on water almost constantly...more for a dry throat, than dry mouth.
I returned to full time work, as a bookeeper, at a local high school in the fall of 08. I tired very easy, and still do. But being aound the kids, and terrific staff is much better for me than staying home, not to mention the needed health insurance.
Gosh, I appologise for rambling on, so. I'm really eager to share my experience, and hopefully help you, and others in their journey. I definatly have some issues that I could use some advice for, too. The "new normal" isn't always easy to figure out!
Best to you, Ratface. It's great to finally "talk" to you!
Judy

Judy.2 said:

Hi Kurt,
Thank you, for your Thank you! I understand, all too well, how you are feeling these days. I have to share with you, that in those early, scary days, I had no idea of the blessings about to ascend on me. I read articles written by cancer survivors that said they would never "give back" their treatment experience, even if they could. I thought they were NUTS. Now, again, I know well, what they were talking about. I was unprepared for the outpouring of love and concern that was waiting around the corner for me. I could go on and on about some of the efforts that my family, friends, co-workers and students at Wausau West High School did for myself, and my husband. And I shouldn't forget the medical world, either. I hope I'll be able to share some of these stories at some point. I pray that you will have a similar experience.
I have to get moving. My work day starts at 6:30 am. (the same time my radiation treatments were!) Sure don't hear me complaing about having to go to work!
Fondly,
Judy