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July 16, Fri

Medical Update

 Well folks, it’s now July 2004 and a lot has happened since my January report. I will give all the details below, but the bottom line is I’m still dealing with yet more tumor-related issues. To summarize briefly, I apparently am experiencing post-radiation swelling of the tumor mass and I’ve been on steroids for two months now in an attempt to avoid further surgery or even a permanent shunt in my head. The saga continues and the story is not over yet. Following is a chronology of events that may serve others in similar situations. I will take up where I left off in January…

 As I mentioned last time, it took about 10 days for the side effects of the radiation treatments to wear off, after which I felt better and better every day. I went to an acupuncturist who gave me some wonderful Chinese herbs (Sea of Chi) to get my energy levels back up and they worked wonders. I felt I was on the road to a full recovery quickly. As a matter of fact, I felt good enough to accept a job as a translator, guide and contact person for a Canadian group who wanted to establish ties in Costa Rica, so I ended up spending two weeks there with them in February. Talk about healing energy! 

Everything seemed rosy until about a week after my return from Costa Rica. All of a sudden my whole system crashed, literally from one day to the next. For some inexplicable reason, I suddenly had acute insomnia, hot and cold flashes, extreme fatigue, and night sweats. At first I thought it was due to too many Chinese herbs stimulating my system, but I switched herbs and that didn’t help. Then I did my “sleuth” thing and tried to figure out what was happening and why.

 After four weeks of virtually no sleep (waking up five times in five hours every night) I was borderline psychotic (or maybe fully so) and was describing my plight to my sister when she said, “Oh, you’re just going into menopause is all. Mine started like that from one day to the next and I haven’t slept a full night in four years!” Well, duh. Here I was convinced the causes were some bodily breakdown problem and it could be just a normal hormonal transition. So I researched menopause to the nth degree and started on some supplements and sure enough, most of the symptoms quieted down. However, I was totally exhausted still and wanted to know why.

 At this point I consulted a chiropractor/neurologist friend and we muscle tested all my major organs to see which ones, if any, were not up to snuff. All of them tested fine except my adrenals. They were shot. No surprise there. After 2 years of non-stop stress, it’s a wonder they worked at all! So I added adrenal supplements to my menopause supplements and my symptoms began to slowly disappear (though the insomnia continued at a somewhat lesser scale). I also researched all I could find on adrenal glands and discovered that they are critical to hormone production, so when mine were called on for assistance they were unfortunately too far gone to respond properly and I was subjected to an acute onset of menopausal symptoms. [For an excellent book on adrenal function, check out “Adrenal Fatigue” by James L. Wilson. Many people may actually have adrenal fatigue (not failure) and not know it.) 

By March I seemed to have my body back functioning somewhat normally when I noticed that my head was hurting a lot and it wasn’t just from the continued lack of sleep. Several trips to the chiropractor helped alleviate some of the pain so I thought it was mostly just a misaligned spine. In fact, I had a full workup done (X-rays and thermal and electrical scans) just to see what was going on with my spinal column and discovered that my lifetime of adventuring has left me with 10 bone spurs and a Phase II degenerated spine! I have since begun a long-term program to correct and repair the damage and it’s improving, but it could no longer be blamed as the sole cause of my headaches.

 Having taken care of what I thought were all the possible reasons why my head was hurting again, I suddenly began to have more tumor-related symptoms and realized that something was not kosher. I started having typical trigeminal nerve symptoms such as numb lips and tongue, twitching eye, drooling, tingling cheek, etc., plus a host of other symptoms like poor handwriting and a right leg that was always weak, numb, hot or cold. In addition, the headaches were getting worse until I finally had to admit something was happening and decided to get my follow-up MRI two months early.

 At this point I consulted both Dr. Gil Lederman (who did the radiation) and Dr. Nick Chandler (my neurosurgeon here in Montana). There was a definite concern of possible hydrocephalus and the possibility of having to either put a permanent shunt in my head to relieve the cranial pressure or even another surgery to “de-bulk” the tumor if need be. Dare I say I went into instant fear over those possibilities? I was on pins and needles the day of my MRI and luckily there was no evidence of hydrocephalus (whew!!). The scan also seemed to show some beginning necrosis, which means the tumor is dieing from the radiation. At least there is some comfort there.

 However, despite clear MRI photos, the diagnosis is still being debated as to what exactly is going on in my head. Dr. Chandler and the radiologist say the tumor is swelling due to the radiation and is 10 to 15% bigger. Dr. Lederman says it’s the same size and there is no swelling but gives no explanation as to why I am experiencing all the symptoms consistent with renewed pressure on the brainstem. I voted to go with Dr. Chandler’s assessment, as I knew both intuitively and empirically that the tumor was swelling and it is the only explanation for my symptoms.

 [A note on swelling: people ask me how a dead or dying tumor can swell. Well, think of when you get a bruise – the dead and damaged tissue turns black and blue (necrosis) and the body’s response is inflammation/swelling to repair damaged tissue and carry away dead tissue. Likewise, the radiation has “bruised” the tumor and the body’s response is inflammation/swelling to do repair and clean-up. Apparently, post-radiation swelling of tumors is rather common, if not expected, especially with tumors as big as mine.]

 So where to go from here? Dr. Chandler said I could try a round of steroids to reduce the swelling but he advised me to see if it would go down on its own first and if the symptoms worsened then I could resort to the drugs. Good advice. I was optimistic I could manage the swelling by other less harmful means and my parents invited me to go stay with them at their house near the beach in North Carolina to de-stress and heal for a month. Gladly!! A dear friend donated her frequent flyer miles to get me to NC and I spent the month of May with my family there in the hopes of healing up quickly.

 Unfortunately, that was not to be the case. I had hoped to continually improve while resting but instead I got progressively worse. Eventually I had difficulty swallowing, had jaw spasms that choked me, experienced increasingly severe headaches, was unstable on my feet and dizzy all the time, suffered extreme fatigue, numb lips and tongue, unstable vision, a weak right leg, drooling, an earache in my deft ear, deteriorating fine motor skills (like handwriting), and I had difficulty maintaining my balance while walking. All in all, not good signs of healing!

 By mid-May I knew I was in trouble and I finally acquiesced to having to take steroids after all. The first dose of Decadron brought immediate relief from the headaches and the other symptoms began to lessen as well. I went on a low dose (6 mg./day) for only 5 days, then tapered off (it’s dangerous to just stop steroids, you have to come off them slowly). At first I thought all would be well, but as I lowered the dose, my symptoms re-emerged and got worse again! The dosage I took was apparently not strong enough or long enough to do the job.

 Realizing I would need further treatment, I called Dr. Chandler and started over, this time at twice the dose and for three times as long. No fan of pharmaceuticals, I quickly became familiar with the less pleasant aspect of drug side effects. This type of steroid is catabolic, not the anabolic type that athletes take. That means that instead of building muscle mass, these steroids actually destroy it. However, weak muscles are the least of the effects. In my case, the biggest effect is acute insomnia (oh no, not again) where I’m only getting 2-3 hours of sleep a night. I’ve even had to get some prescription sleeping pills so I can get a few hours’ more rest every so many nights. I feel drugged!


The steroids also make me very hyper. If you think I’m normally a high energy person, you should see me on steroids! It feels like being on amphetamines all the time where I’m constantly wired but tired. In addition, I’m now subject to big mood swings, a huge appetite, rapid weight gain, severe constipation and a very round “moon face” typical of cortico-steroids. It’s been an interesting sojourn into the world of steroid medications, one I’ll be happy to be done with as soon as possible! 

And that brings me up to the present day. I am currently tapering off the full dose of Decadron and monitoring my symptoms as I go. There are two possible outcomes here: either the steroids knocked back the swelling sufficiently that I will only experience ever- lessening symptoms until the tumor shrinks back completely, or the swelling isn’t over yet and there is still a possibility of debilitating symptoms, hydrocephalus, a shunt or surgery again. Obviously I’m optimistic that the worse is behind me now and it’s only a matter of time before all this heals up and is done with. I’ll know which it is in about two weeks when I’ll be finished with the Decadron and on my own again.  Barring anything serious in the meantime, I will do a follow-up MRI sometime around October. 

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And that’s it for the medical update. I’ve appreciated all the love and support my family and friends have given me these past months as I face these latest challenges. I don’t know what I would have done without such assistance. My heartfelt gratitude goes out to all those who have sent me their prayers and healing energy – every bit has helped me I’m sure of it. Thanks everyone, for being there, for caring, for making a difference in my life. 

Philosophical Points 

Ah, I have pondered so many things these last few years and have gotten very existential in my musings about why all this is happening to me. It’s the old “Why me?” syndrome. Actually, I’ve now come to the conclusion that is should be more like “Why not me?” I believe in the old adage that “God doesn’t give you challenges you can’t handle” so obviously this challenge is one I can handle.  

I consider the fact that I started on this particular journey from a fairly healthy position. That is, I was strong, ate well, slept well, exercised, did my daily yoga and meditations, never got a cold or flu, and generally enjoyed rather robust health. Perhaps that’s why I was able to continue to function normally for a year with a huge tumor in my head that would have debilitated someone else in poorer condition. In any event, my excellent health I’m sure put me in a good position to be able to endure and heal quickly from all the surgery, radiation and steroids. 

So why not me? I had the good health to rely on, the positive mental attitude to assist in my healing, the vast network of friends and family to send me their healing prayers and thoughts, and the writing skills to share my journey with others who could benefit from it. If you believe in Fate or Karma or even Destiny, then my Life’s path was destined to include this Acoustic Neuroma. If you believe in plain old luck or chance, then I simply didn’t beat the odds. Regardless of where your belief lies, it is what it is, and I’ve had to deal with it for 2 years now. However, if I can help even one other suffering person by going through this challenge, then it will have all been worthwhile. 

In addition, there have been so many lessons and blessings on this journey that I would not have had otherwise, so I do not judge this as having been a “bad” experience so much as having been one of grand self discovery. I have grown so much and learned so much and expanded my mental and spiritual horizons like never before. I have also become very well versed on physical matters of the body (and especially the brain) and have used my own body to experiment on with every healing modality you can imagine. That makes me a bit of a resource for others who are seeking ways to heal themselves both naturally and allopathically from various ailments. It has been a major education for me, not to mention all the personal growth that’s come with it.

For example, one of the biggest blessings to come out of this has been the opportunity to spend more time with my family and get to know them more intimately as adults. It has been an absolute delight to be able to spend quality time with my parents (who I appreciate more and more every day) and my siblings (especially my two sisters).  

Another gift has been to teach me to be able to receive and not to just give. This may sound kind of hokey, but frankly, most of us (especially women in this culture) have no problem giving to others but have a terrible time receiving graciously. I’ve had to learn not only to accept help, but to actually ask for it without feeling guilty. This has been a big lesson for me, since I’m the one to always help others but never feel worthy of accepting help from others, even when it’s obvious I need it. 

During my last visit in May to North Carolina to visit my family there, I also had ample time to do lots of contemplation on the why and wherefore of all this and I learned a lot about myself that I would not have taken the time from my busy life to discover otherwise. (Another gift from Grok!) This has led me to make some fundamental changes in my life, to seek more balance, to have more fun, to relax a bit more and not be so serious about life. After all, you never know when something serious may strike you so it’s better to live every day as if it were your last, because it could be! Life is for living so live it!! 

And that brings me to where I am today, once again dealing with the tumor and its effects, and no longer wondering “why me” but accepting “why not me” and feeling gratitude for the path I’ve chosen to be on and how in the grader scheme of things, my journey will ultimately benefit others who may not have the resources and advantages I have enjoyed in meeting this challenge. I am contemplating giving some local talks and maybe some one-day seminars on how people can learn to listen to what their bodies tell them in order to help them heal and/or maintain good health. There is much I can share that may be of benefit to those who are facing their own health crises and I’m excited to be able to help others who are suffering. My own journey has not been for naught!

Well, that’s all of my musings for now. I will continue to marvel at how my body deals with both symptoms and side effects in this latest round of the tumor’s history, and I will continue to recognize the blessings, gifts and lessons that emerge from this journey. In the Fall I will do the requisite MRI and update this site again then. In the meantime, many thanks again to all those who have helped me along this path and sent me their wonderful healing energies, thoughts and prayers. May God bless you all!