Though I feel pretty normal, I am always conscious now of the gray-dirty-ball-of-laundry benign meningioma in my skull. This past week I felt eager to find other pathways to getting this thing taken care of in spite of my reaction to anti-seizure medication. It was time for putting out the calls to all the doctors to see if they were actually still thinking of me, if I was still a patient on their dockets. This is sort of funny to me because only the week before I had been getting tired of doctors, but when you have something like this being forgotten is no fun either. What I’ve learned, finally, is that when you call a busy doctor it takes until the end of the day to hear from them even if you call them right as their office opens. Sadly they may not have even researched an answer to your question, left carefully and meticulously with their receptionists or nurses. It seems they like to hear the question from you directly. Then you may not get an answer again for a few days, at the end of the day.
In addition to the doctors, I did some on-line research for alternatives to surgery for brain tumors and got myself very excited about “stereostatic radiology”. It turns out there has been a ton of progress on radiation for certain kinds of tumors, including benign meningiomas. Doctors of radiology now have the ability to target a tumor; which is simply a mass of cells growing where they oughtn’t to grow, in a way that is harmful often, but not always. Stereostatic radiology is so specific that it often doesn’t touch healthy cells, and that is very good for brain tumors because one doesn’t want to lose any healthy brain cells. They target the tumor from multiple directions with very narrow beams of radiation, guided by an MRI of the patient’s head, prostate, lung, etc. Over one or up to many sessions of a half hour the tumor cells die and shrink away. No drugs necessary. Not much to recover from. You can immediately guess the appeal this technique had for me!
I started right away the process of sending my MRI, CT scan and EEG over to a place in Boulder that uses “Cyberknife” technology for a consult. The process of getting these records sent around is not simple. First you call your primary care doctor and find out what they actually have, and the process for getting those released. That entails a conversation with a nurse as to what you’re thinking, and then they in turn tell your doctor, who then has to get through a day of appointments before calling you back. Your doctor may be in a group that has a medical release process, and so you start that on-line, or you have to go into the office to sign papers. This is all to say, it is not like you can just call your doctor and tell them what to do.
Meanwhile, I put in a call to the immunologist/allergist who I saw right after Thanksgiving to find out if he’d found any research to support his plan to “desensitize” me to an anti-seizure medication. The process is like “immunizing” you to a reaction to a drug. If you’ve ever had an animal allergy and wanted to have that animal in your house, you might have gotten allergy shots to desensitize your body to their dander. The same idea happens with a drug. They give you a very, very small dose of bothersome drug and build up to the minimum dose very, very slowly over the course of 12 hours, 24 hours or several weeks.
I had scared myself to death right after I saw the immunologist/allergist by looking this process up with regards to Dilantin. I discovered that all the symptoms of my reaction to these anti-seizure medications together indicated a killer called “Stevens-Johnson Syndrome.” In other words, I could have died! This is to say to anyone who has a reaction to a medication take it very seriously even if the symptoms seem not so bad. It astonishes me that the neurologist didn’t ask me to come in a see him in his office until I had a third reaction, but that is another story. I called the immunologist/allergist right away in a panic, and his nurse called me back and assured me that this is precisely the reason why they would do the “desensitization” to the medications and that I would be monitored very closely to be certain of me safety. Deep breath.
Then I sent an email to the neurologist, who I had been scheduled to see on Thursday last, to see if he really wanted to see me considering I was not on any of the medications he’d prescribed. Surprisingly, he wrote me back immediately. The reason I use the email is because I find phone talking very irritating for the most part because my hearing seems to be affected by the tumor, and, also, because he has an email address. Grin, he’s gotten a lot of emails from me in the last two months. He prints them all and puts them in my file. This seems very civilized to me. I like this neurologist personally, in case any of you are wondering why I haven’t fired him. He is well-respected by his neurosurgeon colleagues. When I look at him, I think Simon & Garfunkel songs. He wears a bolo with his purple scrubs and he looks like he’s interesting. He shares his office, filled with Native American symbolism, paintings of Hermes, and Egyptian Gods, with a homeopath, his wife, and his children seem to also be involved in the well-being industry, and so I keep thinking that there is more to him than the evidence of my experience. Back to the answer to my question, he wrote back and said that he wanted to see me when I was taking medication so gleefully I took him out of my Google calendar.
Then I thought, while I am at it, I’ll put in a call to the neurosurgeon to update him on what is going on. I was a little curious why he hadn’t brought up the option of stereostatic radiology. Of course, I waited for a return call.
So, while I was waiting, I decided to approach the whole thing from my own perspective that everything in life is a spiritual question. I have outgrown the ideas of affirmations or “The Secret,” having had some of my affirmative years explode on me and I was, frankly, unprepared for consequences. What I am after is a deeper dive into unfolding the gifts of every situation and uncovering the challenges. Obviously, my body gives me a good run for my money. I sought out the help of some women who I respect very much on the path of healing the body-mind-spirit connection, the author, Oriah Mountain Dreamer, and a dear friend, Rose Fitzgerald, both living far away, and then one of the therapists I’ve liked in Boulder.
My question to them was essentially, how I to identify the purpose that will ultimately motivate me through this experience to live fully recovered. I acknowledged that I seem to be most driven by living for others – my children, my husband, even my dog – but that I have trouble taking care of my own needs, putting myself first even with this brain tumor. I will overextend myself to help a stranger, but I won’t necessarily stick to a regimen or practice that supports me. Also, in recent years I have drawn a blank on dreaming my life forward. That has been evident in this blog as I struggled to find my career again. I have the sense that rediscovering my purpose, my destiny, is essential to my healing.
In short, I was a very busy woman at the beginning of the week, and on top of that I made a new friend, made some Christmas cookies and brownies for an old friend who has been very supportive through all of this, walked my dog. I even attended some Middle School open houses with my son, who will be leaving elementary school in the dust of memories in May. It was a very busy week and I am SO very grateful that I was not on medication.
To be continued…