It's the holiday season... a time to be grateful, to bask in the warmth of our hearts and share love and empathy with all those around us. It's a time of reflection and realization. I thought today might be a good time to review some of the tough stuff that I've been through- the beginning. It reminds me of what we are able to endure during the dark hours. Sometimes my walk down memory lane is not all sunshine and melted chocolate filled with strawberries and sweetness, some roads are shadowed by the old, heavy branches of dead trees and sounds of creatures that seem to haunt. These feelings often rush through my body as if they are happening all over again but then I am usually able to pull myself forward to the current moment of: BEING HEALTHY, strong and thankful. I've been through it, it's done... remember that. Let's enjoy the season with happiness and deep breaths. So here's a bit of the beginning:
This part of my life is so distant and was not all that important to me until after my diagnosis of cancer. (I say that as “my diagnosis of cancer” rather than “my cancer diagnosis” because one therapist mentioned to me not to own it, never own it… we’ll get into that later.)
I was ill with what I thought was a cold for a couple months. While completing my post-baccalaureate degree in Art Education at Arizona State University (a two-year program that I petitioned to finish in one short year), I became sick. Perhaps I pushed myself a little too far too fast, or maybe I’m just trying to find reason for this issue that seems to be the first domino in a long and winding line. Friends and family insisted I check for pneumonia. I was fatigued and had all the symptoms of just about anything you look up on the internet. I tried to explain it away because of my school schedule and workload, but I could not deny that I wasn’t recovering. So, after a few doctor appointments and rounds of antibiotics that didn’t do anything, I went in for the pneumonia x-ray. Nothing. But it had to be something because I was in pain and not myself. I was coughing and so tired all the time! Finally, an emergency room doctor one day thought to test for Valley Fever. Positive. Well, at least we know what it is now. Valley Fever comes in the form of a fungus that lives in the Southwestern United States of which only a very small portion of people are allergic. Guess who!? Yep… I’m one. There is anti-fungal medication, but it is not delivered unless absolutely necessary, and my case was considered mild so I did not need it. I was at near the middle/end of this approximate two-year health issue when I moved to Orange County, CA in 2002 after successfully completing that teaching credential program with honors. I secured a job teaching middle school art in California and was set to begin the following fall season. Very exciting! Here we go…
Orange County, CA
My health seemed mostly stable. In fact, I felt like I was in the best shape of my life when I was preparing for my first marriage in 2004. I was of sound weight, had ample energy. But, I knew something was a little off. I attributed it mostly to stress and Valley Fever. I had tested for Valley Fever at one point to see if it had run its course since I was feeling much better, but still sick often off and on. The Valley Fever was gone! YAY!!!! I get to move forward with my life and not worry about that. (This time of my life is still a distant memory. I have since pieced together the parts I personally deem important or possibly a piece of a large puzzle that I often find myself trying to put together… as if once it’s all put together, I’ll have the recipe to prevent cancer.) But then I began having vision problems. Major vision problems. The optometrist noticed some odd happenings and recommended I go to the opthamologist. The opthamologist said it looked as though I could have some detachment in the retina but he really could not say for sure and told me to watch for flashing lights, like as if the paparazzi was flashing cameras on me (right, because I know what that’s like). OK. So, then I’m referred over to a retinal specialist… and this is where the real fun with my vision begins.
Sometimes you think you’re headed in for one specific thing… other times you know you don’t know what to expect… and then there’s those times when what you’re informed of is just downright shocking and almost unbelievable. This was one of those times.
The retinal specialist, who was so very kind and extremely accommodating to my near anxiety (I say “near” because I didn’t really have anxiety issues much before cancer, but I did tend to get nervous for big appointments), that I almost felt worse for him than I did myself. Almost. He informed me that I had what was called “Pars Planitis with Macular Edema.” Basically, that is a part of my eyeball inflamed causing a fluid buildup that ultimately affected my vision and could potentially become so bad that it causes blindness. OK… I’m a visual artist. I have been an artist as long as I can remember, literally. I have built a nice resume as a professional artist and now I teach visual art to kids. My favorite part of art is color theory. SEEING COLORS!!! How do I continue to make art if I go blind? Obviously, this was a huge blow to me! A threat of going blind would be devastating for anyone, but I felt like my world would crumble because visual imagery is my LIFE! Fortunately, this is something that can be treated and managed, but with side effects. Usually it is treated with steroid injection in the eye. Let me repeat that… A NEEDLE IN THE EYE! Luckily, I got the needle just ABOVE the eye in the eye socket. Which is bad enough. Though, if that doesn’t work, the doctor will put the needle directly into the eyeball. (Think “Clockwork Orange.”) The steroid injection eventually causes cataracts in 100% of patients. So, I have that to look forward to now. And, while it isn’t all that painful when administered, it’s just absolutely grotesque (to me anyway, maybe most of you can handle watching a needle head towards your eyeball, but it’s pretty nerve-wrecking for me)… even just the thought of it is just gross. Then, shortly after the injection, the whites of the eye become bubbled out with red blood. As an artist, I began to imagine all sorts of things that could go wrong with this of course, but the worst part is when the doctor told me that I would be fine and all went well, “just watch for blood; it will be normal for the white of your eye to turn red and puff up a little as the blood enters between the layers of your eye, but if it starts oozing out, you’ll need to call me right away.” UHHHH… WHAT?!?!! Did that just happen?! Some doctor just informed me that my eye could bleed from the white part!?!?! OMG… I’m going to pass out if that happens, that’s all I could think about. Of course, every minute of the day, I was checking my eyes in the mirror. The kids at school either cringed or thought it was the coolest thing they’ve ever seen. Fortunately, that never happened to me. THANK GOD! The red bloody eye stays bloody for quite some time. It slowly fades off. Though it’s not painful, it’s not something you can just hide, especially in a middle school classroom. I was taking too many days off and ran through my sick leave quickly. So, with this last round of edema that popped up in 2006, I chose not to have the injection again and go with an oral steroid instead. (sigh of relief for me… dodged a bullet or rather, a needle in the eye.)
During this time, I had seen a few different doctors. I decided to find a Naturopathic Doctor. Given my newfound fear of doctor visits, I thought I should try the natural route. I believe in Naturopathy and I believe that our bodies have the abilities to heal themselves if properly nutritioned. I also believe that treating our bodies as a whole is more beneficial that treating a symptom, as most modern day MD’s practice. So, I started on my naturopathic journey. (More on that later.) In California, it is legal for Naturopathic Doctors to be primary care doctors and so after a few initial consultations, I found one I absolutely loved! So, while she was working on boosting my immune system with drips and supplements, I continued working out, eating healthy and trying to figure out why my vision was so bad in spurts. (Side note: We need to advocate for Naturopaths to be legal as primary care physicians in all states!)
I found that this vision problem that I was experiencing is known to be a “symptom” of something larger. Of course it is, right!?! CLINK! I’ve somehow managed to find myself in the middle of a set up domino system of bad happenings. So… what’s the list of options for horrible issues that could be causing this vision problem? Do I get to pick the least problematic? The one that is the lesser of all evils or am I going to assume it’s going to be the worst? We all assume it’s the worst, don’t we? As you can guess, the list entails just about anything and everything. I say this literally, not metaphorically. It literally could be anything because it is related to an autoimmune disorder. Of course, my brain immediately finds the worst case scenario and I start praying. Not that I never prayed before, but I think the vast majority of us tend to pray a little harder or a little more often or with a bit more spirit when we feel we are in need. And, that’s where I was at this point. COMPLETELY LOST.
So, I went through testing… several doctors, lots of blood tests. I did my own research and was actually hoping to get a body scan because I KNEW there was something wrong with me before the doctors even confirmed it. Ask my BFF… she will tell you “You kept saying you knew your body was off. You said it!” So, of course, in our lovely nation, with our “healthcare” (or lack thereof) system, I was not able to get a scan just because I wanted one because I could not afford it out of my own pocket and even if I could, I’m still not sure I could have gotten one.. So, I kept on searching.
I have a very close relationship with my mother. So, she would fly out from Chicago and take me to these doctor appointments as I grew a little more nervous each time.. I would find a doctor, go, come home with nothing new. Find another, go, come home again with nothing new. At one point, one doctor told me it was all in my head and I honestly wondered if he was right. My mom and husband kept me calm for the most part. I was also feeling good about keeping my health up with the Naturopath. Still, I knew something major was wrong. I wasn’t sure I wanted to find it but I knew I didn’t want to go blind so what choice did I have?
We always have a choice; we just don’t always see it.
My life was busy. My life was good. Overall, I had very little complaints, considering. I married in November of 2004. Thankfully, with the whites of my eyes white! Then, after selling our townhouse, we moved into our house with a yard close to the university my then husband was attending for grad school, close to my aunt and a cousin with his family… life was great. We adopted our baby-dog, Salvadora Dali (Sally for short, my mom used to call me Sally as a child and it wasn’t looking like I was going to be having children of my own at this point to pass the name down.) Sally was hands down, THE best dog ever and more like a daughter in a furry body with four legs and a tail. We had money for vacation. I was building my name as a professional artist and working as an art teacher. And, I continued to try to get my health under control. But, eventually, I was out from work so often that I started having to pay for my own substitute teacher. I was overworked and beginning to feel fatigued again. I made a difficult decision to quit my teaching job on good terms, thankfully.
I wasn’t quite sure what I was going to do for money so I set myself up with some credit cards just in case. My then (now ex-) husband wasn’t making enough to support the house we had just purchased, but I could not continue with the stress of the job I had while fighting to be healthy. I wasn’t sure this was the right decision or not and I miss teaching there very much, even to this day. It was a great staff, a wonderful school of children and supportive, friendly administration. It was not an easy decision to make, but I knew I was sick and I could not afford to keep paying for my subs… nor was it fair for the kids to have subs that often. So, I went into real estate knowing I could start fairly quickly with little investment. I did that alongside a home-based business to make a little money, but it was so very not rewarding. Now my morale was diminishing. I was a real estate agent for about a year while still going through the search for this health issue that was causing my eyes problems.
Pain in my right hip lead me to seek help from my Naturopath who was now officially my general practitioner. Now, hip pain is a common monthly occurrence for me because I’m a freak of nature. I don’t get abdominal cramps during my menstrual cycle like most people; I get hip pain instead. The kind that makes me want to lay in bed and not move any muscle from my stomach down for an entire 24 hours. Whatever. But when it didn’t go away one month, then another, my naturopath said “Let’s get a scan.” I know I had been asking for this scan but the thought of there actually being a legitimate reason to have it now scared the crap out of me. Seek and ye shall find. Maybe I should have ignored my problem so it would have gone away… that’s what I was thinking anyway.
She recommended a scan because I was currently taking that oral steroid for the vision problem. Over time, the steroid can cause something which occurs in the hip… She was looking for Avascular Necrosis. It was a longshot to have this given the short amount of time I was on the steroid. So, I wasn’t too concerned about that, but was more concerned that I had to have an MRI now. I’ve never had one. I’m slightly claustrophobic, not too bad, but enough to make me nervous about the scan… not to mention the fact that I might just find what I was looking for… and I certainly wasn’t ready. I’m not a fan of looking for problems… they generally tend to find their way to me without looking. AND… they told me it would require an IV (which to me meant hooking me up to a tube with liquids, which I had not ever had in the past… freak out time!)
I won’t go into the details of the stress of having this MRI run, which in retrospect were not nearly at the level my stress of scans becomes now- NOT. EVEN. CLOSE. It actually wasn’t that bad. Just loud. They gave me earphones with music to listen to and since my head was not being examined (which has now become a running joke with everyone who thinks they should scan my head all the time), I didn’t need a helmet or get put into all the way. We were just looking at the hip. The IV that this anxiety girl was so worried about was just an injection without the tube. Lucked out on that one… just put that domino back upright before it hits another.
The ND (Naturopathic Doctor) called me a few days later and immediately said “Hi Amanda, Where are you? I want you to sit down and take a deep breath.” While this of course made me feel like I was going to die immediately because that is never a good thing when a doctor says that, I was thankful she was so kind and caring when she did say that. I trusted her… and still do to this day. If that woman called me today and said “Hide, the sky is falling!” I totally would! So, I sat down and took a deep breath. I honestly don’t even remember where I was when this happened, but I do remember that I was with a friend at the time consoling her about money issues and we were headed for ice cream after an errand of some sort that I had to take care of. The doctor said “As we expected, the good news is that you do NOT have necrosis. The not so good news is that we do see a large tumor in your leg bone near the hip. That’s probably what is causing the pain... (words fade to mumble in my memory because I’m stuck on “tumor.”)... full body scan… cancer… maybe benign… bone scan…” I’m really not sure about all of what she said anymore.
Long silence. I hear nothing around me. I forget where I am. My thoughts? I don’t hear them. I don’t have any.
Complete, fragmented immediate meltdown.
My day of consoling my friend just took a U-turn. I need to go home.
I could have cancer?