Tuesday, April 19, 2011

Long Story

The doctor actually called Monday afternoon, earlier than his assistant had said he would. Not sure if that's a good thing or if it's an indicator of how serious things are. Not that I need a reminder of just how serious. Regardless, the news was as expected: Squamous Cell Carcinoma. He recommended that I come in to discuss it with him in person.
After some minor issues with the office and scheduling (the doc had said I could come in today to talk with him, but the office kept trying to tell me he doesn't do 'same-day' scheduling), my parents and I headed to his office at around 2pm.

Even though we didn't have a legit appt, we didn't have to wait long to see him. He explained that I had a tumor in my tonsil, which wasn't news, but that it had spread to involve the lymph node that was swollen - swollen not as an indicator of the nearby cancer, but because it was cancerous as well. He went on to talk about what are basically my 3 options: Radiation and chemo and if necessary, surgery. His opinion was that often rad and chemo don't do the job alone and I would likely have to have surgery anyway, and that going at it with only rad and chemo meant much more intense versions of that treatment, which could likely result in a lot of damage to my throat, possibly to the extent that I'd need a permanent feeding tube.

On the other hand, surgery first would reduce the need for such intense therapies and is more likely to do what's necessary without severe physical scarring. Surgery comprised the other two options. Basically the same operation, but with two differing options as to rebuilding my neck and jaw. The first surgical option involved removing tissue and muscle from my chest to replace the muscle and tissue removed during the operation, and the second option called for using tissue and muscle from my left arm. The chest option could be performed solely by Dr. Rothman, but the arm option called for a cosmetic surgeon who would repair my arm, presumably because it's more visible than my chest I guess.

He explained that the surgery would involve a 'radical dissection' of my neck, my jaw would be taken apart, basically, to get at the tumor in the tonsil area. This tumor presents as firm and 'fixed', as opposed to a looser tumor which would feel more like a ball under the skin that can be moved around. The loose version of the tumor might have been operable through my mouth using robotic tools. Mine is fixed and fibrous and can't be removed that way.

Either option means major surgery and I would likely be recovering in the hospital for 7-8 days. A milder course of radiation and chemo would follow about 5 weeks later. I could potentially have these treatments done anywhere I like, not necessarily here in Phoenix. My mom and dad would certainly prefer that I return to Florida for these for obvious reasons. I could live with them and as they are retired, they could be full-time caregivers during the treatments. I still have a lot of mixed feelings about going back to Florida, but I know that it would be easier for everyone involved, me included. I know I have a lot of friends in Florida who will be happy to know I'm coming "home".

*edit* The doctor gave me a 75% chance of being 'cured'


After leaving the Dr's office, we tried to find out if the hospital had some sort of patient advocate service to help with the financial problems that I'm sure a lot of patients experience. It was a little disheartening that the information desk people looked at us like we had sprouted horns. They made a half dozen calls before giving up. They directed us to the ACCCHS and DES offices. Access and Dept of Economic Security. I had already started the application process for these two branches and upon speaking to the woman in the office we were able to confirm that my application was in the system and I just had to finish gathering the requested information to complete it. Once done, as long as I'm not making enough money, there should be no reason why I wouldn't get Access, which is basically state-paid health insurance. She explained that I might have some co-pays, but that I wouldn't have to pay a "percentage" of any costs like in a traditional insurance scenario. I asked her if the fact that I did have some limited insurance already would influence or alter my chances of getting Access or how much I get and she said no, one would just be secondary to the other. She also explained that the application was put in on April 1st (go me!) and that I should get reimbursed for any expenses paid since then. My mom would get her $1000 back!

Obviously this was a HUGE load of my mind.

I have no major issues with having surgery, beyond being scared shitless of the surgery itself and moreso; the recovery in the hospital. The idea that radiation and chemotherapy treatments will be less intense after the surgery help relieve some of my fears, or at least the intensity of said fear. My larger concern, beyond mortality, is the possibility of a long-term or even permanent feeding tube. I don't have huge issues with disfigurement or scarring (much), I just fear losing one of my few remaining pleasures in life - food.

Oh well, baby steps. Dr. Rothman is going to consult with a cosmetic surgeon he works with and get back with me in a couple of days. Surgery is expected to be within 3 weeks.


Colleen said...

You're my hero Peegimus. True story.

bobby said...

I did the radiation after a year of trying to avoid it. I live with the serious consequences, including a permanent feeding tube. The long-term effects of radiation didn't kick in until more than five years after treatment. I've also lost much of my hearing.

I never heard mention of a choice between surgery and intensified radiation. I was continuously given the option of surgery but I declined because my ENT said it wasn't vitally necessary. I didn't want the effects of surgery which included damage to my upper shoulder muscles.

As a survivor of apparently very similar diagnosis - squamous cell cancer of the right tonsil with mets to the lymph on the neck - my advice is to not submit to fears. Find your inner strength through mindfulness and meditation practices. One step at a time. Things are not as they appear. One of the worst problems is the stories our minds come up with about the given situation.

Respectfully with best wishes and prayers - Bob

Guy said...

It is definitely a problem. I have a very good imagination too.

I was just replying to an email from my dad about something similar.

This is the problem I'm having with information. Every single one I find is about someone convinced that "their" solution is the one. The one that really cures cancer and doctors and pharmaceutical companies don't give us because they're greedy blah blah. A friend who had cancer said no sugar, dad says no carbs, my roommate says load vitamins, some magazine says lemons. One says exercise is good, the other says exercise is bad. One says heat kills cancer cells better than radiation, another says cold, another says never do Chemo. I have 2 friends who say never do surgery. It's beyond ridiculous.

Not that I don't appreciate the advice, I really do, but at this point, the only advice I can really put faith in is the doctor's, whether I'm confident in his assessments or not.

As for the intensity of the radiation, my impression is that he meant; how many radiation sessions, not necessarily more or less rads per session, but again, I don't know for sure.

Anonymous said...

Circumstances alter cases.