Updates for December 7, 2003

Dec 7 Sunday

Medical Update

Written by Val

As I sit down to write this update I realize that two weeks and a few lifetimes have flown by since I last wrote. To say a lot has happened in two weeks would be a huge understatement. So let me begin where I left off last time and bring you up to speed on what’s happening in this incredible journey of hope and healing. (Please be forewarned that this update is a bit lengthy given the many events that have transpired lately.)

Rejection - Dejection

Last time I mentioned that I was awaiting word about possible radiation treatments and I had a pending appointment with my neurosurgeon, Dr. Nick Chandler. Well, my recent MRIs had already been sent off to the Mayo Clinic and I was waiting to hear from them about when I would be going for radiation, how many treatments, what dose, etc. Much to my surprise, Mayo called me the day after Thanksgiving to tell me that I was not a candidate for radiation because the tumor was too big for their radiation technique, and that they recommended another surgery as soon as possible, followed shortly thereafter by radiation!!    NO-O-O!!!

As you can imagine, I went into instant and deep depression and fear over that one. I simply could not think about going through brain surgery again with the months of recovery needed, and then do radiation after that too. I was in deep despair all that day and couldn’t sleep that night either. The next morning I meditated on it all and came to a place of peace (more like resignation) about having another surgery. In my usual fashion, I tried to find the positive aspects of this latest development and I figured there were many: I knew what to expect this time, the tumor wasn’t as big, it would be easier to remove (so I thought), they wouldn’t have to worry about my hearing, balance, vision or facial nerve, and I thought I would likely recover quickly.

Shortly after I reconciled myself to the Mayo Clinic’s verdict, it suddenly dawned on me that they were only one opinion of many. Why not seek some other opinion on my situation? So I hopped on the Internet and went to the website of Staten Island University Hospital (SIUH), a place my dad had researched earlier and had been urging me to consider. (Thanks Dad!) Within two hours of reading all SIUH’s information, I came to the conclusion that they would be able to do radiation treatments on a tumor my size and I would be spared another surgery. Yeehaa!! I was ecstatic, overjoyed, elated and relieved. It was like someone had just pardoned me from a death sentence.

The rest of the weekend went well. I was happy, confident and felt like I had some control over my destiny. First thing Monday morning I got on the phone with SIUH and had them fax me their application form. They said they do a conference every Thursday to review potential candidates for their radiation program and I would need to submit my MRI scans and all my medical reports by then. So I immediately called my neuro-otologist, Dr. Peter Von Doersten, to have my charts copied and ready for pick up that day, and checked the FedEx Overnight Express pickup times later that day. I was determined to get into SIUH.

Monday afternoon I had my scheduled appointment with Dr. Nick Chandler and I went prepared to make my case for a second opinion from SIUH. I had (incorrectly) assumed that he would support the Mayo Clinic’s opinion for surgery since he was a neurosurgeon, and it was his recommendation to go there, but it turned out not to be the case. Nick was very supportive of my bid to apply to SIUH for radiation treatments and immediately had my charts copied so Joe and I could FedEx them that day. He also had more copies of my MRI scans made up and sent them off to various surgeon colleagues of his that he considered might take my case if I opted for surgery. I am so blessed to have such caring surgeons supporting me!

After reviewing my MRIs he was completely candid with what my options at this point were:
      1)       radiation if someone will take me
      2)       another surgery plus radiation
      3)       do nothing, suffer increasing disabilities and die an ugly death over the span of two years or               more.

Since neurosurgery is his specialty he gave Joe and me the low-down on what another surgery would entail. To begin with, a second surgery is a much higher risk than the first one and there would be better than a 50/50 chance of me being left with at least a permanent facial palsy - (paralysis) [see also: Barrie's Story] and perhaps a disabling stroke or worse. The reason Nick and Peter stopped where they did the first time around was precisely because it was too risky to continue into the mass of blood vessels and nerves that the tumor was enmeshed in. They wanted to spare me any complications or a possible stroke or death on the table. Nick also mentioned that my tumor was among the top 10% of the most difficult tumors to treat (I always was at the head of my class in everything.)

Nick was clear that he would not do a second surgery on me, and that whoever did so would most likely be more aggressive and do some damage. That left me with having to contemplate going out-of-state somewhere to doctors I don’t know, possibly without the support of friends or family there, face serious permanent complications and their associated costs and other ramifications, and then still have to do radiation later! The remaining alternative – die a long gruesome death – was equally unappealing. Needless to say I went into immediate fear and depression again and ended up in abject despair before long.

The rest of the week has been a blur. Tuesday I could do nothing productive or focused. I moped about in a bleak depression, imagining all the worse case scenarios that my mind could conjure up. I called my parents with the news and they offered full emotional and financial support for whatever I needed to do and my mom got the prayer chains back in motion to pray for a favorable outcome with SIUH. I could think of no reason why I would not be considered a candidate for their radiation program, but the possibility existed that they might say no too and that alone kept me in fear and worry all week. It took a supreme effort of will power for me to catch myself imagining all those dire outcomes and to focus instead on positive results, but I eventually managed to pretty much stay focused on appreciating what I had in the moment and not focus on potential bad scenarios. I still slipped into fear a lot but I could function again.

 Radiation - Elation

It’s hard to describe the emotions I felt as I struggled with thoughts of life and death and the deeper spiritual meaning of it all. I have attempted to address that in the following section on Philosophical Musings so for now I will simply address the medical options. Long story short: on Thursday afternoon SIUH called to say I’d been accepted into their Fractionated Stereotactic Radiation program (FSR)  and I could start as soon as I wanted! To say I was overjoyed is an understatement. I never dreamed I’d be so excited to be going for radiation to my brain! I called everyone I could with the good news.

That brings me up to where I am today. In three days Joe and I are going to my niece’s wedding in Tennessee where all my immediate family will be. From there we will accompany my brothers back to Connecticut and on Dec.16th I go to Staten Island for my doctor consultation, a fitting for my head frame, and a CT scan with the head frame for reference for radiation after that. Depending on what the doctors there say, and what the computer program comes up with, I will then begin treatments that week and continue with however many I will need (at least five) every third or fourth day till I’m done.

As I sit here still reeling from an incredible emotional week of ups and downs, one thing shines through above all else and that is the love and support of my family and friends. They have shared my joy and despair, my doubts and my fears and they have been there for me 100% the whole time. Joe and my immediate family in particular have risen to the call to literally save my life and there are no words to acknowledge my gratitude to them. I’m not sure where I’d be right now if not for them but it wouldn’t be pretty…

Philosophical Musings

As always, I like to share my thoughts and feelings about the emotional and spiritual aspects of this journey. Many people have commented to me that this part is more helpful and insightful to their own travails than the medical details of treating an acoustic neuroma. So with the intent of helping others understand their illnesses, here we go…

These last two weeks gave me an incredible opportunity to experience fear in its most profound form, namely fear of death itself. It took the form of smaller fears as well, such as fear of surgery, fear of not getting into SIUH, fear of permanent disfigurement, etc. All of it though was a gut wrenching “I’m going to die” reaction in the body.

I have done enough reading and research to know how detrimental to your health fear can be on all your bodily systems. When you go into fear of any degree or duration it sets off a bio-chemical chain reaction in your body that depresses your immune system, takes energy away from food digestion and absorption, depletes your adrenal glands, stresses the heart, and on and on. In a word, it wreaks havoc on your well being and can make you even sicker.

What is fear really? When you’re immersed in it, it is very real, very visceral – your body has an immediate and tangible reaction. Everyone knows that feeling and no one likes it. But most of the time we have no idea how to deal with it. If anything, it tends to feed on itself and grow all out of proportion to the original trigger that set it off. Most of us can hold onto that for long periods of time, sometimes our whole life on some issues.

Dealing with Fear

So how does one deal with fear? Ah, that is the million-dollar question here. My own recent experience gave me some insights into what fear is all about. For starters, I want to distinguish between a normal logical kind of fear (like being afraid of a vicious dog biting you – that’s a healthy survival mechanism) and the kind of fears that have no immediate correlation in your reality (phobias, what ifs, etc.). It is the latter kind to which I direct my discourse.

Many deep fears are almost always imaginary. By that I mean that we imagine some possible future occurrence of something we don’t want and we fear it will happen. The more we think about how awful that would be, the more fearful we become of it and the more real it seems to be. As we do so, the bio-chemical reactions we set off in our bodies begin to do their damage and continue to do so as long as we focus on that fearful thing.

The key here is that it is, basically, all in our heads. That’s right, whatever this awful thing is, it’s not present in this moment in time, we are only projecting into the future how awful it would be if it happened to us. Therein lies the answer on how to deal with it. Get out of the future “what if” scenario and focus completely on the present moment, where the fearful thing doesn’t exist. Right here, right now, it’s not in your reality, so why invite it in?

The most effective way that I’ve found to counter runaway fears is to focus on those things IN THIS MOMENT that are joyful or for which I am grateful. For example, I look around me and am grateful for a loving husband and family, I have a nice home, beautiful gardens, lots of caring friends, I have food, shelter and am in general good health, I have two great cats that bring me constant joy, etc., etc. The list is almost endless. And if I choose too, I can also dwell on happy memories and quickly bring a smile to my face. Just as fear has certain negative effects on the body, likewise joy and happiness have very positive effects on the body. If you can imagine fear you can also remember happiness, so why not choose happy thoughts instead and feel better?

I know this may sound too simple a process to be true, but I urge you to try it next time you fear something that isn’t in your reality just yet. And yes, I know what many will say, “But if I know for a fact that such and such is going to happen for sure and I’m afraid of it, then aren’t I justified in being fearful of it now?” Actually, two responses come to mind: 1) for your own peace of mind, leave the fear behind till you actually have to deal with the dreaded situation (and there’s a way to deal with that kind of fear too) and just stay focused on your current well being RIGHT NOW, IN THIS MOMENT, and 2) the future is not cast in stone and can change, so worrying about it or fearing it doesn’t accomplish much of anything besides making you feel awful.

How and what you think NOW will affect what your future will be in the short and long term. Focus on fearful things and no doubt you’ll probably manifest them. Focus on what’s right in your life and chances are that is what you create in your world. And for those times when something not wanted happens to you, try to look at the most positive aspects of it that you can and keep counting your blessings in the present moment. Given a choice of feeling bad or feeling good, you decide which you want to feel right now. With dedication and practice you can do it.

Now for one last comment before I go. Throughout this whole process I have been tuning in to my intuition for guidance as to what to do, whom to believe, what my body needs, etc. I know I have mentioned using your intuition many times since I began this journal but it bears repeating because it is so key to healing. Someone faced with multiple choices, some even concerning life and death, will no doubt fall into doubt, despair and confusion as to what to do. Your body ALWAYS knows what is best for its survival and will guide you to all the right choices if you will only tune in and listen to it. There are many many ways the body speaks to us (more on that another time) but trust your “gut feelings” and sudden “Ah ha’s” and don’t let social convention inhibit you from knowing what is best for you. After all, who could possibly know your body better than you do?

Pay Attention

The Universe (or God/Goddess/Buddha/Allah or whomever you believe in) will support you in trusting your instincts. I have found in my own personal experience that one of the ways the Universe gets my attention is through synchronicities. When something totally out of the ordinary happens it catches my attention and makes me stop and immediately tune in to myself to see what it is I need to be aware of.

For example, last Thursday as I was consciously dealing with my fears about not getting in to SIUH’s program, I was driving home from town when suddenly I looked up and saw a bald eagle circling overhead. It crossed my mind that maybe that was a sign that everything would turn out fine for me, but I kept on driving anyway. I went around a corner and looked up and there were another four bald eagles above me! This was unusual enough to catch my attention and I recognized it as a synchronicity, so I pulled over and watched them and then tuned in to my intuition. Sure enough, my body was telling me everything would be fine. An hour later I got the call from SIUH saying I was accepted. This has happened to me in so many ways and so many times that I can’t emphasize enough that we are supported by the Divine and it speaks to us in many ways. We only need to pay attention and tune in to our inner being to know who we are and what we need to do. It’s always there for us, 24/7, we just need to be aware of it. And those funny little “coincidences” and “synchronicities” in life can alert us to tune in to our guidance.

Well, I’ve rambled on long enough so will end here. I leave on Wednesday, 12/10, for Tennessee and then on to Connecticut for 3-4 weeks. I will have e-mail contact but cannot guarantee I will be answering all my e-mails. Please be patient with me as I undertake this next step in my healing journey and check here every so often over the next weeks, as I will be posting updates periodically.

Once again, I am deeply grateful to all of you for your prayers and positive thoughts. Bless your hearts this holiday season and always.