As you might recall from an earlier episode, there was the ENT here in town who, when asked, continually said I should/could wait for the tell-all MRI. I have not seen him professionally since March or so earlier this year, although I did run into him at one of the many funerals I attended shortly after my diagnosis. (Remind me to tell you some other time about being a funeral whore)
So yesterday at my Monday with Mish and Marla lunch, just as our food is being served, who should walk in and sit down at the table right next to us IN MY LINE OF SIGHT??? Bingo. Dr. Death. Well, I shouldn't call him that since I am technically still alive. He said Hi, I said HI, and I had to take a moment to retrain myself to breathe again.
Thank the Universe Mish was there to talk me down and we had a very pleasant lunch, although I was somewhat distracted by the fact that I knew I HAD TO SAY SOMETHING. Right?
We were minutes from leaving, I told Mish I was ready, I was going to say something to him, but would wait until she left so I wouldn't embarrass her. Abruptly and without warning, he and his lunch companion stood up, tossed their trash and left the restaurant. I watched them leave, and then, as if an afterthought, Dr. Death poked his head back around the door and said "See Ya!" and left.
Nothing. Not one word, after 15 years of treating various members of my family, after all the hearing tests, after getting my MRI last summer. Nothing.
Mish and I looked at each other and burst out laughing. I could not believe it! And I had lost my opportunity. But dear sweet brilliant Mish asked me what I would have said. Here iit is...
I am sad and disappointed in you as a health care professional. You are not the person I thought you were. I have trusted the health of my family and my own to you for over 15 years. You operated on my son twice. When I came to you for help, I completely trusted you and your expertise. When I asked for diagnostic testing, you refused twice.
I had to go elsewhere to have the test that showed I have a potentially life-threatening condition. You received the MRI. I had them sent to you. And you never contacted me. And today, not a "how are you? How is the family?"
I would have expected nothing more.
Tuesday, December 08, 2009
Wednesday, December 02, 2009
It's still not cancer, why am I not relieved....
This week was the second MRI, the test that would tell me if the tumor had grown, stayed the same or (oh please oh please oh please) gotten smaller. I’ve never heard of an acoustic neuroma getting smaller, but I was encouraged to think it smaller and it might be so.
Between the time of my last MRI (June 10) and this past Tuesday, I continued to receive acupuncture, I did a 40 day toxic cleanse consisting of lots of fruits and vegetables, and then 8 days with nothing other than steamed green beans, zucchini (thanks Jill) and celery. This concoction was steamed to submission, and then pureed with some spices to create a thick broth. Caleb said it smelled like vegetable fart. (He graciously held that opinion in until after I was done with the 8 days of ingesting nothing but the broth.) Prior to the “fast” I was dizzy and tired and really spacey on Sundays…I don’t know why specifically Sundays, but there it was . I actually felt and continue to feel a lot better since the fast, and didn’t feel deprived at all during.
The neurologist in Seattle assured me that waiting the six months was not like living with a time bomb. Slow growing. Would not “harden” in its spot. I was relieved. Deciding to wait the six months to schedule surgery until after the Chanukah party gave me a lot of time to read, research, study and worry. I worried myself into a tizzy, and had some panic attacks. To distract myself, I traveled a bit, visiting people I hadn’t seen in a long time, just in case it turns out I can’t travel for a while. I performed a wedding. I was in a show at the Theatre Guild. I kept really busy. I’m still taking on tasks, most of them short term, until I meet with the surgeon (a different one..more on that later) in a few weeks and we decide what’s next.
I have been doing a lot of on line research and participation in on line forums with other folks who have or have had this condition. There are a lot of us. Surprise. Considering how many (or how few, depending upon how you look at it) I can’t say I buy in to the whole “Cell Phone Caused the Tumor” theory, or there would be a lot more tumors, don’t you think? Of course, how many go undiagnosed? If I hadn’t pushed my doc, I’d still be happily oblivious.
As it turned out, there were two national Acoustic Neuroma conferences this summer. One was in Chicago, the other in Vancouver Canada. I was in Chicago a few weeks before the conference there, but was able to go to the conference in Canada. I’ll tell you, walking in that door was REALLY hard. The first people I saw were three women who had obviously had the surgery, as they all had nerve damage. I got really lightheaded. I sort of freaked out. I wanted to leave, but it was too late. I had to know. I had to see what the future held for me. If it was going to be this, I had to face it.
The symposium was in a room with about 10 round tables that sat 8 each. I sat in the front so I wouldn’t feel so compelled to meet anyone else’s eye. Of course, I’m not a pariah, and had showered that morning, so some other folks did sit at my table. Of course, they were nice, everyone was nice. The docs talked one at a time, the surgeon, the neurologist, the radiologist. I asked them all a million questions. They answered them all. During the break, they gave me recommendations in Seattle, (yes, the doc I am seeing this month is one of them.)
The turning point for me was mid-day when a little lady (and I say that with the fondest affection, she was maybe 5’1” tall, and had nerve damage on her face.) talked about her AN journey, how young she was when she was diagnosed so many years ago, how young her children were at the time, and when she talked about what she looks like, versus who she is on the inside, I could not stop crying. (oh, yeah, the girl from the US, the one who keeps asking questions is now a blubbering idiot…nice…alert customs…)
Out of the 40, or so, people there who had had surgery, most of them had nerve damage. Some more than others, I could tell. But I was looking for it. And they didn’t walk around moping or feeling sorry for themselves. They found their support group, and they lived their lives. There were people there who I thought were like me, pre-surgery, watch and wait. And then there were these two REALLY pretty girls. Well, women. I could not for the life of me guess why they were there. Yeah, you guessed it, they BOTH had had the surgery. One in the last calendar year, the other about three years ago. Except for strategic placement of seating, in order to put their best ear forward, you/I would never have guessed it.
I learned a lot of things that day:
1. The Canadian health system is amazing, yeah, there is a long wait, but if your situation is life threatening, you get bumped to the front of the line.
2. Docs in Canada get paid regardless, so if the surgery isn’t going to immediately save your life, it’s probably not going to make it better, so they will opt to wait as long as possible.*
3. Tumors can grow without a change in symptoms
4. Symptoms can change without tumor growth.
5. There is a .1 to.2 margin of error in reading an MRI*
6. Tumors will eventually stop growing.*
* I contacted the surgeon by e-mail and asked him based upon his information, if he would review my MRIs and make a recommendation for surgery or waiting, and he said he would
So at the end of the day, I had made new friends, got more information about the tumors, surgical options and post surgery outcomes. I was exhausted.
A month later, there was a support group meeting south of Tacoma which I attended, and met two people who had had the surgery done by the Group Health doc Doug Backous. (He is the doc who will most likely do the surgery in Seattle if I have it, when I have it.)
Fast forward to this past Tuesday, when I had the second MRI. My doc’s office called to tell me the radiologist recorded a “.1-.2mm growth” from the last MRI. First of all, don’t you think it would have been a good idea for her to make sure I was in a safe place when she told me that? I mean I was DRIVING FOR GOD’S SAKE!!!
Given the margin of error, (See #5 above) I’m assuming that is exactly what they read and there is actually no growth. Actually, that assumption came after “getting my drunk on” Tuesday night and being wide awake at 3 in the morning. Today, I truly celebrated. I will not drink again until after my December 17 appointment. In the meantime, I’m still celebrating “no growth” and not anticipating surgery anytime soon. That and a nice prescription is helping me sleep at night….
Between the time of my last MRI (June 10) and this past Tuesday, I continued to receive acupuncture, I did a 40 day toxic cleanse consisting of lots of fruits and vegetables, and then 8 days with nothing other than steamed green beans, zucchini (thanks Jill) and celery. This concoction was steamed to submission, and then pureed with some spices to create a thick broth. Caleb said it smelled like vegetable fart. (He graciously held that opinion in until after I was done with the 8 days of ingesting nothing but the broth.) Prior to the “fast” I was dizzy and tired and really spacey on Sundays…I don’t know why specifically Sundays, but there it was . I actually felt and continue to feel a lot better since the fast, and didn’t feel deprived at all during.
The neurologist in Seattle assured me that waiting the six months was not like living with a time bomb. Slow growing. Would not “harden” in its spot. I was relieved. Deciding to wait the six months to schedule surgery until after the Chanukah party gave me a lot of time to read, research, study and worry. I worried myself into a tizzy, and had some panic attacks. To distract myself, I traveled a bit, visiting people I hadn’t seen in a long time, just in case it turns out I can’t travel for a while. I performed a wedding. I was in a show at the Theatre Guild. I kept really busy. I’m still taking on tasks, most of them short term, until I meet with the surgeon (a different one..more on that later) in a few weeks and we decide what’s next.
I have been doing a lot of on line research and participation in on line forums with other folks who have or have had this condition. There are a lot of us. Surprise. Considering how many (or how few, depending upon how you look at it) I can’t say I buy in to the whole “Cell Phone Caused the Tumor” theory, or there would be a lot more tumors, don’t you think? Of course, how many go undiagnosed? If I hadn’t pushed my doc, I’d still be happily oblivious.
As it turned out, there were two national Acoustic Neuroma conferences this summer. One was in Chicago, the other in Vancouver Canada. I was in Chicago a few weeks before the conference there, but was able to go to the conference in Canada. I’ll tell you, walking in that door was REALLY hard. The first people I saw were three women who had obviously had the surgery, as they all had nerve damage. I got really lightheaded. I sort of freaked out. I wanted to leave, but it was too late. I had to know. I had to see what the future held for me. If it was going to be this, I had to face it.
The symposium was in a room with about 10 round tables that sat 8 each. I sat in the front so I wouldn’t feel so compelled to meet anyone else’s eye. Of course, I’m not a pariah, and had showered that morning, so some other folks did sit at my table. Of course, they were nice, everyone was nice. The docs talked one at a time, the surgeon, the neurologist, the radiologist. I asked them all a million questions. They answered them all. During the break, they gave me recommendations in Seattle, (yes, the doc I am seeing this month is one of them.)
The turning point for me was mid-day when a little lady (and I say that with the fondest affection, she was maybe 5’1” tall, and had nerve damage on her face.) talked about her AN journey, how young she was when she was diagnosed so many years ago, how young her children were at the time, and when she talked about what she looks like, versus who she is on the inside, I could not stop crying. (oh, yeah, the girl from the US, the one who keeps asking questions is now a blubbering idiot…nice…alert customs…)
Out of the 40, or so, people there who had had surgery, most of them had nerve damage. Some more than others, I could tell. But I was looking for it. And they didn’t walk around moping or feeling sorry for themselves. They found their support group, and they lived their lives. There were people there who I thought were like me, pre-surgery, watch and wait. And then there were these two REALLY pretty girls. Well, women. I could not for the life of me guess why they were there. Yeah, you guessed it, they BOTH had had the surgery. One in the last calendar year, the other about three years ago. Except for strategic placement of seating, in order to put their best ear forward, you/I would never have guessed it.
I learned a lot of things that day:
1. The Canadian health system is amazing, yeah, there is a long wait, but if your situation is life threatening, you get bumped to the front of the line.
2. Docs in Canada get paid regardless, so if the surgery isn’t going to immediately save your life, it’s probably not going to make it better, so they will opt to wait as long as possible.*
3. Tumors can grow without a change in symptoms
4. Symptoms can change without tumor growth.
5. There is a .1 to.2 margin of error in reading an MRI*
6. Tumors will eventually stop growing.*
* I contacted the surgeon by e-mail and asked him based upon his information, if he would review my MRIs and make a recommendation for surgery or waiting, and he said he would
So at the end of the day, I had made new friends, got more information about the tumors, surgical options and post surgery outcomes. I was exhausted.
A month later, there was a support group meeting south of Tacoma which I attended, and met two people who had had the surgery done by the Group Health doc Doug Backous. (He is the doc who will most likely do the surgery in Seattle if I have it, when I have it.)
Fast forward to this past Tuesday, when I had the second MRI. My doc’s office called to tell me the radiologist recorded a “.1-.2mm growth” from the last MRI. First of all, don’t you think it would have been a good idea for her to make sure I was in a safe place when she told me that? I mean I was DRIVING FOR GOD’S SAKE!!!
Given the margin of error, (See #5 above) I’m assuming that is exactly what they read and there is actually no growth. Actually, that assumption came after “getting my drunk on” Tuesday night and being wide awake at 3 in the morning. Today, I truly celebrated. I will not drink again until after my December 17 appointment. In the meantime, I’m still celebrating “no growth” and not anticipating surgery anytime soon. That and a nice prescription is helping me sleep at night….
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