Offensive Realism

It has been 18 days since my last entry. Stating it like that almost feels Catholic. I have met with my doctor twice since my surgery. The news couldn’t be better – they were able to remove the tumor with mostly great margins, and spare my ability to speak and swallow. So while that is the best possible news with recurrent head and neck cancer, I still can’t help but feel that I will be spending the rest of my life looking over my shoulder, so to speak. In a sense what a cancer patient fears worst has already happened – recurrence. But I would be lying if I said that I’m not concerned about it recurring again. My friends say “maybe you’re done with this; it doesn’t HAVE to come back, does it?” I certainly hope that is true.

I recovered the ability to speak in an intelligible manner pretty quickly, through sheer force of will. My doctor was very surprised. I had a job interview with the County Department of Health Services scheduled just a week after surgery – something to challenge myself. I had two interviews for positions at the Office of AIDS Programs and Policy on Tuesday 7/31 and two second interviews for those positions on 8/1! It has been very exciting.

All the while I bit all of my stitches out of my tongue — apparently very common, but extremely painful. I’m still on liquids, oatmeal, very soft eggs and pain medication. They say that the need for medicine should last for another few weeks. The sooner I’m off of them the better. They are a poor solution for pain – but better than nothing. I don’t remember the surgery being so painful last time though it was far more extensive – yet now after this the pain continues to radiate to my left ear and neck. Maybe the dramatic experience of radiation treatment made my first surgery seem meager in comparison.

I plan to go to the wellness center in Santa Monica to start hanging out with people in various stages of cancer treatment. Though I am in the clear for now, I think it will be a good experience to hang out with people who have been in the same boat that I’ve been in. Since the surgery I feel like I’ve had hardly any time to rest and hopefully I’ll have a few weeks before getting some good employment news to relax and kick back – and catch up with people.

If you have written or called with your support I want to say thank you here and now until I can get to you individually. Family, friends, my professors from school (also my friends!) – your support and kind words have been invaluable and I have truly felt that I have not had to go through this alone.

There has been so much going on that it has been difficult to put together any coherent thoughts on the past couple of weeks. Not three weeks ago I was contemplating how much time I might have left (again…) and now I’m trying to restrain myself from getting attached to one particular position that I have interviewed for! Perhaps my feelings about the whole experience are only now beginning to catch up with me.

I suppose I have put off writing this for too long. I have to leave for the hospital in a few minutes. There has been so much to take care of. I’m having surgery today to remove the tumors from my tongue. Much has yet to be determined, but I have made a decision to be hopeful. At the very least it will be an end to the pain in my ear, throat and tongue. My surgeon and the Head and Neck Surgical oncologist I consulted with late last week both agreed (along with the rest of the tumor board) that surgical excision was the best course for now.

I have experienced a sudden change in attitude that I can attribute to nothing in particular. After all, the surgeons concluded the same thing four years ago – just surgery. That resulted in close margins, 6 weeks of hellish radiation to my head and neck and the loss of 90 lbs. 133 lbs doesn’t look good on anyone with my frame. I don’t want that again. What’s more, radiation is no longer an option. Having said that, to what do I attribute my different attitude? I guess I’ve done my homework, read articles, made calls, met specialists, talked it out – there is not much more I can do. This has resulted in a kind of surrender to my current situation. I’m not that angry or afraid, nor do I feel I am resigned to some terrible fate. I guess I have accepted this reality, for the moment. That acceptance could be revoked at any time.

Ironically, during this period of preparing for surgery, my phone has been ringing off the hook for job opportunities, certainly something to look forward to. I have set up interviews in the coming weeks that will help fuel my recovery. In the mean time, I just have to get through today.

I have been reminded that there are drawbacks to being intellectually curious. Alright, I guess that’s putting it mildly – perhaps more an obsessive researcher. When it comes to something like cancer, it seems especially sensible to be well informed about what I will likely face. So when I listened to my doctors, read their expressions and looked at available research, prospects for recurrent head and neck cancer patients appeared and indeed are, grim. I started to prepare myself, given my past experience with cancer treatment, for at least more of the same: pain, massive weight loss and lots of down time. I read up on all the recent minor advances in treatment.

Armed with this, I went to my original surgeon on Wednesday 7/11, and she booked an MRI and PET/CT scan for me. I was fortunate enough to get the MRI directly following my appointment that day. The PET/CT will have to wait until the 26th. She also referred me to a tumor board that will discuss my case history and current events and then determine a course of action. My surgeon said something interesting to me, “What has it been, five years since your surgery?” It had been four. “I’m sorry that this is happening”… “You know George, you’re up on the latest treatments, you’re asking all the right questions, you have a good attitude … I hope you’re not like this just for my benefit.” I think her expectation was for me to be more upset. Believe me, I have been – I guess I just don’t do it in the doctor’s office. I told her that I was in fact acting so very  positive for her benefit. The whole interaction made me think, I’ve been pretty much running on adrenaline for the last couple of weeks. I haven’t had any time to process the information let alone have some feelings about it – besides basic anger.

I went home from the medical center that day feeling like I had made some forward momentum in dealing with my situation. Thursday I called the tumor board people to make sure that they had my referral and were working on it. They said they were indeed working on it and that they would get back to me in the next couple of hours with a timeline. When they called back they told me that a Head and Neck Oncologist/Surgeon would like to meet with me to review my case prior to going to tumor board – they had an appointment for Friday (yesterday). I had trouble sleeping Thursday night. The pain in my tongue and ear kept breaking through the pain meds. My blood pressure has been way above normal the last few weeks – for obvious reasons. I also knew that the following day I would get more information about my situation.

My friend Jim went to the doctor with me yesterday. I was amazed by how full the waiting room was for Head and Neck Oncology – a full house. We waited a long time and I had to fill out a questionnaire about the medications I currently take. Finally, we were called into the office. A new examination chair had just arrived, and the doctors were getting a demo. I would be the first patient to be examined in a state the state of the art chair – and I joked with the office staff about it. We went in and sat down, a Physician’s assistant took a narrative from me about my cancer from the beginning four years ago, side effects of treatment up to the current situation. The doctor came in and examined me and discussed my case with the two resident doctors. He asked me a series of questions and then left the room to examine the MRI results. He returned and I was completely unprepared for what he would tell me. He said that I was lucky – it seems like this has been caught early. So early, that it could surgery could be completely CURATIVE. I had to ask him three times in three different ways to be certain of what he was saying. No 6 months – year of palliative chemo and/or salvage radiation. He made no guarantees, but he said that it looks very clean on the MRI. I am still processing the implications!

Of course nothing is certain, it all depends on how surgery goes, how clear the margins are, etc. Larry is adopting a wait and see attitude. But slowly I feel my spirits lifting. Far more often than not, recurrent head and neck cancer is caught when it has advanced beyond complete surgical excision. For the moment I feel like I have won the lottery. And I’m going to go with that feeling until I know otherwise.

In the interests of operating as soon as possible, this new surgeon is going to do a virtual tumor board- meaning I won’t have to be present and I won’t have to wait a week for an appointment. He will confer with other experts for other oncology disciplines on Monday and he will call me and tell me what they have come up – what they think is the best course of treatment. It is clear that he doesn’t want to wait. Due to the spreading nature of this cancer – it grows like a weed – time is of the essence. I hope they will schedule surgery as soon as possible. I’m lining up a second opinion – but I don’t think that this is very controversial.

I’m off to a wedding – I’ve got to leave it here for now….

G

Hello everyone! My friend Lisa has been encouraging me to do a livejournal for years now, and in light of recent events, it seems like the right time.

I guess my main purpose in writing now will be to keep my friends and family up to date with the latest information about my treatment for recurrent head and neck cancer. Yes, it's back - and as they say, this time it's personal. I make no guarantee to stick to any particular format or narrative style. I intend to provide regular updates and summaries about the events related to my treatment and I'm certain that how I feel about them is bound to show up as well. This is not a substitute for talking with me! If you want to get in touch with me, please do!

But I'm getting ahead of myself. If you're just joining me on this journey, have been absent, or are just dying for a very brief recap - here goes. I am long term survivor of the AIDS epidemic (about 17 years now). I have reclaimed my life from years of illness and fear of illness, abuse of alcohol, drugs and cigarettes with the help of some programs, friends, family, teachers and the work of some very smart people. I'm sober 9 years and some change - been off cigarettes for about 7 years. Aside from the cancer, I've enjoyed great health for the last 9 years.

In 2003 I was diagnosed with stage IV head and neck cancer. Typically you get this kind of cancer from smoking and drinking or inhaling large amounts of diesel exhaust. But I suspect my immune system is also in the mix. Research is currently being done about this, but conclusive results have yet to emerge.

My recovery from cancer the first time emboldened me to return to school and complete my bachelors degree in International Relations and I added a minor in Public Health - a field which I think my own life has provided me at least one doctorates worth of experience. I'm extremely proud of going back and finishing that degree - I graduated this last May - just two months ago. I was preparing to enter the workforce - had some great interviews for positions that I really want when cancer came back.

I was in the middle of interviews and my tongue started hurting - and it didn't heal for a couple of weeks. I went to the doctor, the same surgeon who operated on me 4 years ago and we decided to keep an eye on it. A couple of weeks later it was really hurting - I went back to see her with my husband and she booked me for surgery to get a biopsy on 6/29/2007. The results came back positive for "moderately well differentiated" squamous cell carcinoma. The same deal as last time on the same side of my tongue.

I've cried a bit, but most of all lately I'm angry and dare I say it - bitter. Wow. How cliche is that? But it's me for now. As I've said before and I'll say again - despite everything I have had a nice life, great friends, wonderful husband, home and family. Certainly now. But it just seemed like everything was coming together so well for the first time. Don't get me wrong, I'm not giving up. I want to pursue a career and more education and retire with my husband somewhere quiet. But I am dejected and angry.

The doctor who performed the biopsy on 6/29 had to go out of town for a week and a half on vacation. I wasn't supposed to get the results until yesterday. But I had an appointment with another doctor 7/5 (last Thursday) and he broke the news to me. I've done all sorts of research - my library access through school still works for the time being. It has been useful and a bit depressing. This kind of cancer is hard to treat the 2nd time around. But I went to my doctor yesterday armed with latest data about effective treatment, chemo and imaging technologies we started to sort things out.

So here's the deal. I was able to get a same day MRI yesterday and the doctor scheduled a PET/CT scan for me on the 26th. The MRI is for surgical detail and the PET/CT is to determine the extent that the cancer has invaded other systems. I have been referred to the tumor board - a panel of experts who will review my case and decide how to proceed - surgery, radiation, chemo or some combination. I called this morning to make sure things were moving along and they indeed had received my referral and are working on it and will get back to me before Friday with the date of my tumor board. I expect that it will be by the end of next week. Say what you want about Kaiser - but I continue to receive excellent care from them.

As I write this Kaiser just called and I have an appointment tomorrow to meet with another Head and Neck Oncologist - apparently a super-duper specialist.

I know the enormity of all this will hit me at some point, until then I will keep taking the action I have to. And I will keep you all posted.


G