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!

Set-up Day

Last Thursday was set-up day. The day started at 8:30A and ended around 4P...I didn't do all that much and yet I was as exhausted as I might have been if I had spent the entire day running. Most of the day I found my self visualizing where else I could be at the moment, transferring my mind away from my body. During my CAT Scan (a cylindrical tube in which many x-rays take a picture of...well, in my case, the brain), I imagined alternately being in a cool, beautiful tropical waterfall, or on the edge of a perfect white beach with the ocean gently lapping at my feet. This test is actually about 40 or so uncomfortable minutes, in which hot metallic contrast is injected to make the picture..."pop". Very weird sensation...but I'm at the waterfall. The hard table starts to become really uncomfortable around now...but I had about 30 more minutes to go. From the scan, I have a small, very small haircut (shaving) made at the top of my hairline. This is made to apply small marker points so that they can know where to point the radiation beam. This is my only haircut for the day, but not my only marker points...as I will find out later. I lay on the table and have a mold made of my face...this is hot, moist, and claustrophobic...you can breath through your nose, but your mouth and eyes are sealed shut. I imagine that I'm receiving a fantastic facial, or alternately having heavy theatrical make-up applied (this must be what it feels like). This mask when it's completed will be what is strapped onto my face before every treatment I have for the next seven weeks. Next, my head is tilted back (sort of in a yoga fish pose), I'm almost positioned so that I am on the top of my head, chin up in the air...body laying on the table. This is done so that they can get yet a better picture of my brain on the scan...it only lasts about ten minutes, but that's a while to be on the top of one's head. Next, it's off the doctor's office for a very intricate physical. My neurological functions are tested...can I shrug my shoulders, lift my legs, raise my arms, walk on tip-toes? All these things I pass with flying colors. Can I follow a finger, can I grit my teeth, blow out my cheeks, stick out my tongue, swallow,...these things are somewhat challenged...but not new. I am scoped, something I've become used to...a long camera is passed down my nose into the back of my throat to see how my vocal chords are doing. Nothing new there, left one still paralyzed...this will not change...but still got the other one. Then it's off to have permanent (although small), tattoos made at various points on my face and head...it's to accurately point the beam (accuracy is way key here), during my treatments. The ink is injected with a usual syringe into these various places on my face...I imagine that I'm having botox treatments...never had them, but I'm guessing this is what it must feel like. I'm almost done, except for one last stop at a different location about a fifteen minute drive from my home base (Mass General Hospital), but also 15 minutes closer to being home. This stop is to have an MRI, with more chemical contrast injected into my body. This scan is to get a different perspective on the tumor. The MRI along with the CAT Scan is what will be used to create a three dimensional die-cut to be attached to the head of the Proton Beam to target the tumor. This took a surprisingly long 2 hours and I'm out at 4P. Long day.

Jon and I decided to eat (we hadn't all day) before we head out on the trip back home. We decide to go to a Ruby Tuesday which is directly across from the MRI center where I just had the scan. The place is empty (too late for lunch, too early for dinner). It's just us, and two other people at the bar. I look at these people...and can you believe it...one of the guys is Ken Howard. This may not mean much to many of you, maybe none of you...but it's particularly amazing to me. I know this is Ken Howard because I watched the re-runs of Crossing Jordan (which takes place in Boston) the whole time I was recovering from my surgery in November and December. Ken Howard was a mainish character on that show. I know it's stupid but watching Crossing Jordan got me through my recovery and there was Ken Howard sitting seven feet away from me. No I didn't ask for his autograph, or tell him my "uplifting story", it was just good enough to see him there, somehow comforting at the end of the draining day. I found out after looking him up on Google when I got home that he is appearing in a one-man show about Tip O'Neill at a regional Watertown theater (that's right where the Ruby Tuesday was)...guess he was knocking back a few cold ones before the show...just like Tip would do.

Life is weird. Don't you think?

The beginning of The Beginning

Tomorrow Jon and I travel to Boston, a trip one or the other, or both of us has made countless numbers of times. We went to school in Boston, we have friends in Boston, we've been on vacation there...but no trip we've taken before will feel quite like the trip we take tomorrow. Tomorrow's trip is the beginning of the beginning. On Thursday I will be at Mass General Proton Therapy Center for various brain scans, and set-up for the June 23rd proton radiation start date. I am anxious, anticipatory (this may be the same), dare I even use the word excited, I am somewhat inarticulate at the moment, I am overwhelmed, I am so hopeful. I take with me on this trip the usual "trip items", but most importantly I take with me the enormous feeling of support and love of all my friends and family. Keep sending that positive energy.

Believing just may be seeing

This most recent event has been both exciting and timely.

Looking ahead to the next couple of months with one car was daunting...under normal circumstances it would just be annoying, but considering the fact that I will be commuting back and forth for radiation therapy within the next several weeks for the next several weeks, the annoyance would grow larger. A week ago, I went to sleep and had a dream about getting a call that our new Prius was in and that we could come pick it up, the car in my dream was black with tan leather interior. Remember this was a dream.

While I was dreaming, we had put ourselves on two separate waiting lists, our preference was a grey metallic exterior, with a grey leather interior. We were preparing ourselves for the dim reality that we might have to wait anywhere from 6-12 weeks or more for a car. While we had a first preference, we would take almost any combination...but this would not decrease the wait all that much.

Last Saturday, around 5P, we received a call from a dealer that we had visited, but hadn't even put our name on their list. We had visited them to test drive a car, but they were too busy for us, and we were told that the wait would be months...so we didn't bother to put ourselves on that list. Not sure why we didn't, maybe because we didn't have to,...because it was that dealer that called us to ask if we were still looking for a Prius. "Yes, we are.", figuring that he was calling just to ask if we wanted to be one of the myriad of others on their list...ones still waiting. "Well, we have one coming in next week". "It's a black one, with tan leather interior, would that be okay". "Would that be okay?" "That's the car of my dreams (dream)! I am feeling quite strongly that I pulled this car in from the universe.

And so from now on...I am going to start pulling in all sorts of things from the universe. That's the plan.

Sometimes Less is More

Went on the Chondrosarcoma Yahoo group yesterday; it's been helpful to me in the past. Kind of wish I hadn't. Many postings today about other individuals that have had Proton Radiation Therapy at Mass General...chock full of information about side effects. Of course everyone is different and every tumor is different...but I wish I didn't know what I know...think from now on I will try and stay in the zone of what you don't know, you can't now. Mostly, I just want to be well enough to take care of myself on my own if I have to while I'm undergoing treatment. Still working on finding a place to stay, although I have connected with some excellent possibilities. The car search continues. Lot of things happening at one time, feeling like I'm in the middle of a cyclone today.

It's all relative

So just when you think you've had as much as you can handle...successfully, something else happens...and so it did. We are a family of two cars and three drivers. One of our cars took on a strange clanking, grinding, bad sound about a week ago. Long story short, it will cost $5000 to fix it, or it's time to get a new car. It's time to get a new car. This one died, like won't work at all. After many years of dutiful service, we say a fond farewell, and move on...or should I say forward? But it's all relative.

Let the Radiation Begin

I haven't posted lately...been busy,...busy researching, busy planning, busy waiting, and busy worrying. I had started this blog a few months ago as a way to be able to read my life back...to myself. I didn't get very far. Forget all the old chapters I had yet to write, now it's about the present. The present is about the Radiation Road Trip. I will be starting Proton Radiation Therapy in Boston at Mass General Hospital on June 26th for seven weeks, five days a week with the desired optimum outcome of burning "Mr Dubenschmiemer" (as my daughter Rachel has named this tumor) out of my head. Burn baby, burn! Please feel free to chant along. My plan is to try and update this blog to let everyone know how I'm doing...that's the plan. How often I'm able to write will depend on a lot of things, but I will try and stay current.