Oct 22nd email to some family & friends

"It all started the morning of Monday Sept. 28, when I awoke to some swelling on my neck. I had had a scratchy throat the weekend before and assumed I had a cold coming on. The next morning, when the swelling was still there, I decided to call my ENT and move up my next checkup. So, Friday Oct. 2, I saw my ENT. He thought I probably had an infection in my salivary gland and recommended some meds. We also decided on a biopsy to rule out cancer. On Tuesday Oct. 6, I went in for the fine-needle aspiration (FNA) biopsy on the lump. That's when I found out the bad news....my cancer was back. I was diagnosed with a recurrence of Squamous Cell Carcinoma in a left submandibular lymphnode. (Originally we thought it was the salivary gland, but it turns out that the lymphnode has actually just gotten so big it sorta incased the salivary gland.) A Pet scan on Monday Oct. 12 revealed the cancer was contained to just that one lymphnode area. (yay!) My ENT recommended going back to the Mayo Clinic in Phoenix for surgery. That was where I had the partial glossectomy and right neck dissection about a year ago. Unfortunately, my wonderful surgeon from last time, Dr. Kim, has moved to Seattle, so I met with a Dr. Hayden earlier this week (Oct. 20). Dr. Hayden was Dr. Kim's mentor and has been doing head and neck cancer surgeries for 31 years, so he is definitely good hands to be in. Unfortunately again, Dr. Hayden is going out of the country for a few weeks, so I am not going to be able to go in for surgery until Nov. 16th! I'm a little scared to be waiting so long, but the benefits of waiting an extra week or two for an experienced surgeon (less time in surgery, quicker recovery, less possibility of damage to surrounding nerves and muscles, less chance of missing part of a cancerous node) outweigh the slim slim chance of the cancer growing/spreading.

So....on Nov 16th I will be heading to Phoenix for a left neck dissection, where they will remove all my left neck lymphnodes and my submandibular salivary gland. The surgery should last about 2-3 hours, and I should feel back to normal by the following day; however, I will probably be in the hospital 3-5 days depending upon how long it will take the drain to clear. After the pathology report comes in following surgery, Dr. Hayden will present my case to Mayo's tumor board, who will then recommend the next coarse of action. Right now, radiation treatment is not definite, but it is a "probably". If I need radiation treatment, it will most likely be 30 treatments (5 treatments a week for 6 weeks). It will most likely take place 4-6 weeks after surgery (so late-December through early-February). Since I am young and "healthy" it is possible the treatment shouldn't be as bad. I've known cases of some 30-year-olds who manage to continuing working throughout the entire treatment. I also know cases of people who are out of commission for months, but those tend to be older patients. We will all just have to wait and see how I take it. "

Oct 22nd post to OCF forum

"I'm having a hard time being strong today. I got a call from the scheduler this morning and my surgery isn't taking place until 11/16. I realize the surgeon is going out of town and he has dozens of cancer surgeries to schedule, but I am still very uneasy about waiting so long. I called my ENT who says the wait shouldn't make a difference and he thinks I should still go to Phoenix. He says if I still am uneasy about it, he could do the surgery maybe 11/4.

The surgeon I had last year, Dr. Kim, was so amazing. He was always so willing to work with my schedule and would remember little facts about me from each visit and was just so personable. Dr. Kim got a new job in Seattle a month or two ago, so my files were transfered to Dr. Hayden, Dr. Kim's original mentor. Dr. Hayden seems like an amazing doctor/surgeon with many years of experience and recognition..... I just didn't get the same warm and fuzzy feeling with him. Now with scheduling surgery so far down the road it just makes it that much worse."

Oct 21st post to OCF forum

"Another update - so I met with my surgeon late yesterday...
Turns out it's not actually my salivary gland, but a lymphnode, although it's still contained. The lymphnode swelled so much that it sorta fused around the salivary gland, hence why the ENT had thought that's what it was originally.

Nonetheless, the surgeon is going to do a left neck dissection and remove the salivary glands and all the left neck lymphnodes. Then after surgery he will present my case to the Mayo clinic tumor board and they will collectively decide if they think I need radiation. He says right now it's not definite, but a "probably". If I will need it, he says he always recommends 6 weeks of 5 days/week treatment.

I have two concerns at this point.

1. My surgeon is going out of town and so my surgery won't be until 11/11 or 11/12 (the scheduler is supposed to call me tomorrow morning). I just hate waiting that long. Who knows what this cancer will do in the meantime.

2. My left jaw has been aching off and on recently and I don't know if that's related or not. I sorta forgot to ask my surgeon about it yesterday because it wasn't hurting at the time and I had about a dozen other questions I was asking him.

My surgeon is supposedly one of the best in the nation, so I guess waiting for him to do the surgery is my best option. I just hate the waiting part....that is the worst part of this disease....the waiting and the unknown. *sigh*

At least now I am beginning to have a plan unfold before me."

Oct 15th post to OCF forum

"Another update - I got the results of the PET scan. The only spot that lit up was my left submandibular gland. Horay! I told my husband that was the best bad news I could have gotten. I meet with the surgeon on Tuesday to discuss upcoming surgery/radiation plans.

I think my biggest fear at this point is catching the flu and having to postpone surgery. I just found out yesterday that three people I work pretty closely with are out with H1N1. My husband was sick earlier this week with some other flu strain. I'm trying hard to wash my hands a lot, but it's still a big concern."

Oct 8th post to OCF forum

"Today's update -
I met with my ENT this morning. He said I would get a PETCT, then a left neck dissection, and then most likely radiation. It all depends on the results of scans/surgery/consultations over the next few weeks. The PETCT place called at 5:45 today leaving me a voicemail that they close at 5:30 (what?) and to call them tomorrow to schedule a scan for first thing next week. The hospital called to schedule my consultation with my surgeon for the 20th. I've decided to return to the Mayo Clinic in Phoenix for this round of surgery, as they do 1-2 of these surgeries a week and my ENT says he usually does about 5 a year. After all of that I'll meet with my oncologist for the next plan of attack. At this point I'm just hoping to be home from surgery in time for Halloween. I think the fresh left neck scar and faded right neck scar would make a pretty awesome/scary Halloween costume. Ha!

Thanks to David for the CCC link. It turns out my oncologist is associated with the only CCC in Arizona. Go figure! That makes me feel a whole lot better about how this will all turn out.

Thanks to Charm for the book recommendation. That guy's story sounds awesome and would be a real encouragement during this time. I'll have to pick up a copy as soon as it comes out. "

***Side note about the book recommendation - James Beard award-winning, Chicago-based Chef, Grant Achatz is in the process of publishing a book 'Life, on the Line" about how he survived Stage IV tongue cancer and how he adapted his lifestyle and career and made it through it and is still at the top of the culinary world. There are lots of pics of food superimposed next to PETscans and things. It's due out Fall 2010. Also, I believe there is talk of making a documentary titled "Taste" about Achatz's story, as well. With my love of cooking and personal link with this story, I am very excited about it coming out.***

Oct 7th post to OCF Forums

After many replies to my Oct 6th post with kind words...support...suggestions...

"Thanks for all the kind words/support. I won't know my exact next course for surgery or treatment until I see my ENT tomorrow at 7am.

I emailed two coworkers yesterday who had known I was going for the biopsy. One is an oral cancer survivor and he gave me hug this morning. The other is a good friend and he brought me a box of cookies.

I am thankful for the support of my friends, family, and this forum. And also relieved to hear radiation is not the end of the world. How do I find out if my oncologist is with a CCC? I've been seeing one at the U of A radiation oncology department.

I'll keep you all posted after tomorrow's followup with the ENT.

Thanks again."

Oct 6th post to Oral Cancer Foundation Forums

"Well....I'm one of those typical members who disappears when things are going well. So of course after today's news, I am back.

Last Monday I noticed some swelling on the left side of my neck. Thinking it could be a cold coming on, but also knowing my history, I scheduled an immediate appt. with my ENT. He felt it was probably an infection in my salivary gland from dehydration, but recommended a PETct or biopsy b/c of my history. I chose the biopsy to get the results quicket.

Today I had an FA biopsy done on the gland which came back confirming the cancer was back. The pathologist said I'll need surgery and probably radiation. I'll see my ENT first thing Thursday and plan out my next steps.

I'm just anxious, especially about radiation. I absolutely love cooking and can't imagine what will happen to my salivary glands and tastebuds. I also don't know how I'm going to deal with missing so much work. I thought I was through this.

I'm just overwhelmed right now and needed to put my thoughts down."