Saturday, June 21, 2008

Backward and forward

A bit of history...

It was almost eighteen years ago that I woke up one morning with double vision,. Eighteen years ago I was 30, living in an apartment, Jon and I had been married for 3 1/2 years, we had a 1 year old baby, and I had a brain tumor. Eighteen years ago the technology was cruder, testing and surgery were not what they are today; this seems strange because in some ways 18 years ago doesn't seem like a long time ago, but in the world of medicine, it is a lifetime. The history...my history with this tumor has been something of a miracle. It is a miracle that I'm here writing, talking, and about to embark on what I hope will be the last chapter of this story.

When I was first diagnosed, I was told that I had either a rare benign tumor called an eosinophillic granuloma, which is most frequently found in children (obviously, at 30 I wasn't exactly a child, but it may have been growing for years). This type of tumor was supposed to be very receptive to low dose radiation. The other alternative was that it was cancer, but if I was to start radiation (assuming that the tumor was benign) without a tumor biopsy, and the radiation didn't work, there would be no way of knowing what kind of tumor it was at that point. The radiation would change the tumor's structure and then my doctors wouldn't know what kind of chemo with which to treat it. My surgeon recommended having the surgery to confirm its pathology. The biopsy, while very small (arguably too small) confirmed my doctor's diagnosis that it was a benign eosinophillic granuloma. The surgery was long. I started radiation two weeks after surgery, a comparatively low dosage to what I'm about to receive. I lost the hearing in my left ear, I had double vision for four months after surgery, I had facial paralysis on the left side of my face, I had to learn how to swallow again, and my voice was hoarse. It took seven months to regain full function. But the miracle is that most of this was temporary (except for the hearing). I walked, I talked, my tongue stayed in my mouth, I was able to breathe on my own, I could swallow...and supposedly I was cured.

I would be watched every year for the next 17 years. I would periodically complain of dizziness, light flashes in front of my eyes, headaches, a tightness in my face, but my doctors felt that with no marked increase in the size of the tumor on the recent MRI compared to the year's previous MRI, that my symptoms were stress related, or a virus, or diet related, or something else related. Within those 17 years Jon and I had another baby, bought and sold two different houses, went on many great vacations, bought and sold several cars, adopted several pets...we were living a life.

Then last year I was due for another MRI, this time I was seeing a new neurologist, I had left the one I had for 17 years because I was tired of not being able to get him on the phone when I needed him . I had been hoarse for three months and I started to have trouble speaking (there was clearly something wrong). This MRI showed that the tumor was slightly larger than the year before. My previous MRI's had indicated this as well, but Dr. Do Nothing, (as I will call him for now-the one I couldn't get on the phone) apparently never bothered to compare the recent MRI with the original MRI, and the tumor had grown to twice the size it had been in 1990. Oops! I had the second surgery in October 2007 and found out that the diagnosis was wrong in 1990, and that the tumor was not a benign eosinophillic granuloma, but a slow growing cancerous tumor called a chondrosarcoma. I had been prescribed a treatment for a tumor I never had. Oops!

My neurosurgeon while able to accurately diagnose the tumor, was unable (because of its size and location) to remove it all during that one eight hour surgery. Afterward, his suggestion was to have another surgery and perhaps even another. I just didn't know how I could withstand so many surgeries. I began to research. I discovered that more surgery would never be able to totally remove this kind of skull-based bone tumor, and that in fact there is evidence that surgery may create a growth spurt, so more surgery was definitely not the option. I asked my surgeon if I would be a candidate for Proton Therapy. I had read about this type of radiation online...he told me that only small round tumors are candidates for Proton Therapy. I found out that this was completely false. I found out after pursuing this therapy that it is best for large, hard to get to, irregular tumors (which is what I have). If I had not persevered and taken my doctor's advice, I stood no real chance of getting better...only worse. My surgeon is excellent, but he can't know all there is to know. I would have preferred that instead of telling me something he didn't know as though he did, that he simply said "I don't know". You've got to be your own advocate.

During any of those 17 years, something could have happened. The tumor is in a very bad place, next to many different nerves as well as the carotid artery. I could have had a stroke during childbirth, I could have been left quite depleted by either of my surgeries (the one in 1990, or the one I just had), but I wasn't. I could have had a fast growing cancerous tumor, but it grows quite slowly. The tumor I have is supposed to have a high success rate for cure with Proton radiation therapy...another type of tumor may not have as high a success rate. I had radiation before, that could have prevented me from having it again now, but amazingly it was still an option, because I didn't have enough radiation the last time to keep me from having it this time.

Of course this is a way abridged version of Mr. Dubenschmeimer's (the tumor) history. If you only started to hear my story this last October, you may think that I've only been waiting since then for my appointment this Monday, but really I've been waiting 18 years.

I will we writing as frequently as I can about my experience, and I've also decided to film it along with a couple of good friends of mine. As many of you know who have been getting my group emails over the months, I have passed along things I've learned along the way, hoping that it may help others. Here are some other things,...always listen to your body (no one knows it better than you), don't be afraid to question your doctor's authority, they need to be questioned, they are just people, and they make mistakes too,...plenty. If your doctor seems like a jerk, he probably is a jerk. I thought I was the only one who didn't get along with Dr. Do Nothing, and then I come to find out in passing, that several other friends of mine had gone to him, and thought he was a jerk. There is strength in numbers. The more friends and family that you can have looking and researching on your behalf, the better off you will be. It is hard to be calm in the eye of the storm, but it is what will gain you the most clarity to make the best decision for yourself. Remain as hopeful as you can, because positive thinking attracts positive thinking; I believe this to be so, I am living it.

I'm off to see the wizard!

1 comment:

Mary said...

Hi Heidi, you sure have been through it with this tumor! I am glad that you're expecting it to be zapped away soon. You did a great thing by researching proton beam yourself and not taking the first "no" that you were given. It scares me to think of the people who are not told about this kind of radiation as an option for sarcomas. *sigh* Many blessings and much peace to you and your family!