Monday, January 10, 2022. At the start of 2022, I was feeling pretty good. The Music Tarot, my life's work and the opus of my artistic and intuitive abilities, was starting to come together and I was getting close to finishing Volume 1. This would be the first 12-song album of the collection. The remaining 6 albums would take another 5 years or so to complete, but I was feeling unstoppable, and certain I would finish. Even though this was a massive project, I had come so far to get to this point. There was no way anything could get in my way now, could it?
Cue the sound of car wheels coming to a screeching halt.
Just when I thought I was finally getting somewhere - somewhere solid, somewhere stable - the Universe sent me on another detour. This time to a place I'd never imagined visiting.
Each story has to start somewhere, and cancer is my beginning. So let us set forth, with the background. I need to bring some color to this wall upon which I will hang my blog. This is the story before the story, so that you may understand my unique mindset and physical circumstances on that day, when cancer stood on my doorstep, rang my bell, and said,
"Hello Lorie, I'm here to change your life."
I am 44 years old. For the last 32 years, I have suffered from chronic migraines, ovarian cysts and other gynecological issues, lower back pain and degenerative disc disease, and retinal detachment/lattice degeneration of both eyes. Every day is part of a challenging whole: a continuous life of health problems. A struggle that no one can see by looking at me from the outside.
From ages 12 to 19, I took Excedrin almost daily. I remember going out to weekend parties with my high school friends, attending my first year of college, all while trying to ignore a near-constant, throbbing ache in the back of my head. Some weeks were worse than others. I didn't know what to do, so I tried to treat it with over the counter medicine, ignore it, and live as normally as I could.
The summer before my sophomore year at the University of Wisconsin - La Crosse, I saw an internal medicine doctor, who prescribed my first daily prescription medicine, atenolol, a type of beta blocker. It was 1997 and I was just shy of 20 years old.
- Beta-blockers are one of the most widely prescribed classes of drugs to treat hypertension (high blood pressure) and are a mainstay treatment of congestive heart failure. Beta-blockers work by blocking the effects of epinephrine (adrenaline) and slowing the heart's rate, thereby decreasing the heart’s demand for oxygen. Beta-blockers were first introduced in the late 1960s and proven safe, inexpensive, and effective at treating heart conditions. They were found to also help with migraine by accident. This happened when people who had been prescribed beta-blockers found that the drugs also alleviated their migraine symptoms.
The atenolol worked! For my entire second year of college, I was "normal" and didn't have to put my life on hold to wait out another migraine. But it turned out, this was a short-lived stint, that unfortunately lead to something much darker. This new darkness would hold me deep under water for the next almost decade.
Less than a month after my 21st birthday, in the fall of 1998, I woke up tired one day. It wasn't your run of the mill, "I've been studying or partying too hard" sort of tired. I was exhausted, and I had no interest in... anything. I went to the University Health Services Clinic and was diagnosed with depression and insomnia. At the time, sadly, no one saw a link between taking beta blockers and depression. They thought my depression was triggered by a delayed response to a high-school trauma I had experienced; a somewhat common but impactful, teenage drama. So they prescribed Zoloft, Ambien, and psychotherapy. Off I went to attempt to get better. That "attempt" ended up taking the next 8 years and included trying everything under the sun to come out of the fog of depression and a stack of worsening migraine symptoms. I tried dozens upon dozens of antidepressants, benzodiazepines, calcium channel blockers, anti-seizure medications, neurological medications, herbal supplements, psychiatrics, psychologists, neurologists. I experienced multiple hospitalizations, one grand mal seizure, one ambulance ride, several MRIs, EEGs, and so much more. I lived through suicidal thoughts, medical leave of absence followed by brief unemployment, and just plain struggle upon struggle.
From ages 21 to 28 (1998 to 2005), I fought hard to overcome my depression and find my way back to the light. In December 2000, I somehow managed to graduate with a Bachelor of Arts degree in Interpersonal Communications. I moved to Madison, Wisconsin the following spring and began what would eventually become a long and stable career in Life Sciences, performing document control, quality assurance, and software administration for the pharmaceutical and medical device industries. I also started performing locally as a singer-songwriter, doing the artistic work I was born to do.
Even though every day was a struggle, I held onto a strong denial of my situation.
I cemented the belief that this was only temporary and I would eventually find a cure.
At some point I became sick and tired of being sick and tired. In 2005, I requested copies of my psychiatric and medical records and read through them carefully, trying to find the cause for my depression. So far, none of the doctors had been able to really help me. Sure I was alive, but I was far from thriving or enjoying any significant or lasting quality of life. Nothing had meaning or importance, nothing brought me joy.
Something, an intuition really, led me to discover a link between beta blockers and depression and I learned my mental health struggles we being caused by the preventative medications I was taking for my migraines! That's why none of the antidepressants had worked for me. I needed to stop taking the migraine medicines to cure the depression. I immediately scheduled an appointment with a holistic doctor who specialized in integrative medicine. It took several months, but with his help, I got off all beta blockers, migraine preventatives, antidepressants, and benzodiazepines. I started acupuncture and other supplements. And just like that, one day in the fall of 2005 (I had just turned 28) I woke up, and I wasn't tired anymore. Everything felt different and alive.
I started dating again and met my husband Miah. We fell in love in the spring of 2006, quickly and without hesitation. Things were getting better. But migraine wasn't done with me. The acupuncture and supplements only worked for a little while. The pain eventually returned to the same daily cycle of pulsing, throbbing, nauseating horror. I couldn't take the beta blockers or other standard preventative medicines because they caused too many life-altering side effects. I was fearful of trying anything new on the market, and yet I needed to, because I couldn't function with the pain either. I felt trapped and victimized.
My neurologist had one last medicine for me to try and fortunately I was willing to give it a shot. It was Relpax, generic name eletriptan HBr. To say this medicine saved my life is an understatement. I would trade my entire salary to get Relpax if I needed to.
For the first time ever, I experienced zero pain. It looked like maybe I had found my cure.
Around this time of real migraine relief, at age 30, I started down a troublesome new path of gynecological issues: ovarian cysts, endometriosis, and heavy bleeding. This little detour took me to the operating room on 4 separate occasions from 2007 to 2013. That's 4 times under general anesthesia, 4 times getting cut open, 4 times going through pelvic pain and physical recovery. I tried various hormone treatments to resolve the issues, but they all triggered an explosive worsening of migraine pain. My body hates the natural hormone cycles that happen monthly, and it hates the pharmaceutical hormones I tried to give it to better regulate the monthly cycle. Miah says I should have been a man.
I learned that, simply put, my body hates hormones.
This background wall painting is getting closer to finished now, but there are still two less significant but need-to-be-filled-in-nonetheless, health issues that need to get painted before the base wall is ready.
Let's start with the lower back issues. In the summer of 2000, just before my last college semester, I went water-skiing for my first and last times simultaneously. I fell off the skis and pulled something in my lower back which laid me up for several weeks afterwards. I was a young student at the time and didn't go to the doctor for an evaluation. I probably should have. Since then I've had dozens of "flare-ups" over the years - periods of intense, searing pain. I've had several MRIs, revealing a total of 3 herniated discs. The same discs keep re-injuring and herniating over and over. So basically, I wrecked my spine attempting to water ski and now I have a chronic injury that requires extra care and attentiveness for the rest of my life. I got rid of all my high-heeled shoes (which was a very sad random Saturday in my early 30s) and I've participated in years of physical therapy to keep this injury at bay. Fortunately that's as invasive as the treatments ever got for me, and I hope it stays that way. I didn't need surgery and I don't need to take any medications except those for pain management during the flare ups, the last of which occurred around the time of my 43rd birthday in late September 2020.
Now for the retina stuff. I have worn glasses since I was 12, around the time when my migraines started. I am extremely nearsighted - they call it high myopia. If I'm not wearing glasses or contacts, the whole world is a huge, fuzzy blur. I am that person who, if I drop my glasses, cannot see where they landed on the floor.
In early 2011, when I was 33 years old, my optometrist saw a little blood in the back of my right eye at my annual vision check-up and sent me to an ophthalmologist. The ophthalmologist saw something too and sent me to a retina specialist. The retina specialist figured out the cause of the blood - I had a partially detached retina in my right eye, and several other holes and tears in both eyes. My detached, torn, and hole-filled retinas were the result of my high myopia (which stretches the eyeball and retina), and also something called lattice degeneration.
- Lattice Degeneration is a condition that involves abnormal thinning of the peripheral retina, which is the tissue that lines the back wall of the eye and is critical for maintaining good vision.
I was completely unaware of my vision loss and detached retina because it only impacts a small portion of my peripheral vision. Because I didn't know, I waited too long to get it evaluated. By the time I was diagnosed, it could not be repaired, and is now a permanent detachment. However, since being diagnosed, I have been closely monitored by the same retina doctor for more than 10 years. I've had laser photocoagulation surgery at least 5 times, spanning both my left and right eyes.
- During photocoagulation, the eye surgeon numbs the eye with anesthetic eyedrops. The laser is then focused over the retinal tear or small detachment. The laser emits a beam of light that travels through the eye and burns the area around the retinal tear or detachment to create a scar. This scar tissue helps seal the tear or reattach a detached portion of retina to underlying tissue. With retinal tears, the procedure prevents fluid from traveling underneath the retina, where it can cause detachment.
I call it sticking the wallpaper back to the wall. Each time I have the procedure, it is a little more painful than the last time, because the tears and holes are slowly creeping closer to the central part of my eyes, where there are more painful nerve endings. The good thing about this type of laser surgery is that it does not require any preparation and is performed immediately following the retina exam if deemed necessary. Therefore, I have no time to get worried or freak out ahead of time. I just go to my checkup, find out I need laser, get it done, feel an odd dryness and soreness for a few days afterward, and get on with myself until the next episode.
We're getting really close to the end of my painting now; the picture wall is nearly filled in. The point of sharing all this backstory, which I've tried to keep as brief and yet thorough as possible, is this:
My whole adult life, I have S T R U G G L E D with chronic pain and health issues.
In 2013, after 5 years of working reliably, Relpax stopped fully treating my migraines. Saying those words even now, all these years later, is still difficult for me. What previously was my cure, my lifesaver, my everything, was no longer working for my body. It still helped a good deal, but it no longer provided complete, reliable, pain relief. My short-lived time with zero migraine pain had come to an end. I was already taking the maximum dose at a somewhat risky monthly quantity, so I could not increase it. I needed to find another medicine to supplement its diminished efficacy. I took another intermittent medical leave and went down to part time employment so I could try Botox treatment. It was awful, painful, and simply did not work. In January 2014, I was 36 years old, attempting to return to full time work, back again at what felt like square one. In my head, I was 19 again, setting foot in my first doctor's appointment.
I finally gave in and admitted I am a disabled person.
I decided enough was enough. After 24 years, I stopped fighting against my limitations and started accepting that I need to live my life differently because I have real medical issues that are not going to magically cure themselves. I took that first step and admitted I had a problem and I needed help. I created a list of boundaries and started following them to the best of my ability. My husband Miah, climbed right on board with me and embraced my new boundaries to modify his own lifestyle to fit with mine. He felt the shift with me, and together we started enjoying a quieter, simpler, more routine life.
I gave up my music career. I realized it wasn't serving me any longer. Instead of bringing me joy, I was teetering on the brink of destruction. My marriage had suffered, and I was hanging onto the edge of a deep cliff of regret. Below me, the selfish mistakes of my one-track mind pulled at me ("music, music, music, that's all that matters, make it happen, get that career, get that recognition"). But I was done. I'd pushed too hard, and it was wrecking my life.
I found that as I simplified my life, the more boring and more predictable my days were, the happier I felt.
I started using daily affirmations and began changing my attitude, slowly, one day at a time. I eventually learned I could find peace and enjoyment through embracing my body's shortcomings. Things got better. I discovered that my employment in the medical device industry is not something I "have" to do. It's something I "get" to do. The ability to maintain a stable, well-paying job, is a privilege that I no longer take for granted. In fact, I no longer take anything for granted. However simple, however small, I appreciate it all. Because for me, having felt the darkness of depression and the terrifying, disruptive pain of migraine, stable is enough.
Since accepting my disability in 2014, I have been consistently recovering from my years of trauma and mental/physical instability. I have been functioning well since 2015, for more than 7 consecutive years.
Here is my boundary list that I still live by today:
- When I make plans, whomever I've made them with needs to know there is a very real possibility that I will need to cancel or change them because I do not know what my body is going to do.
- My employer must know that I am disabled and can only work 40 hours a week. I cannot take on too stressful of assignments or projects. I naturally tend to push myself harder than I sometimes should. My supervisor needs to be aware of my condition and step in if I appear to be taking on too much. This helps me avoid a train wreck of a flare up and stay functioning as well as possible for as long as possible.
- People with a negative attitude who don't support me in a way that serves my greatest good, don't get a seat at my table. If I must interact with them, I keep the relationship at a distance. I do not have room for negativity in my circle of friends and family.
- I must live like a dog: routine, routine, routine. I must go to bed at the same time every night and get up at the same time every morning. I must eat my meals at regular intervals, avoid extreme hunger, and drink the recommended daily water amount for my body weight. I must limit my sugar intake. I must exercise regularly. And I must never, ever drink alcohol, take illicit drugs, or smoke cigarettes.
- I can travel, but I should only do so sparingly. Any change to my environment, however minor, sets off a cascade of events in my body which leaves me vulnerable to a flare up.
- It is perfectly acceptable for me to stop trying new migraine treatments that come onto the market. Even though it may be unconventional for me to not be on a preventative medication (in other words, I only take abortive medicines, e.g., pain medicines), I've been through enough. My abortive treatments only need to be good enough. I can stop chasing zero pain relief. I deserve a break after 20 years of trying everything under the sun. I can stop looking for something that works even better and learn to live with my shortcomings with grace and dignity.
I made a ton of progress since admitting powerlessness in 2014. With the exception of one thing, every change I made remains in my life today. The one exception is music. In 2018, Miah started asking if we could bring my music back into our lives. He started nudging me and making hints about buying a new keyboard. Slowly, I became open to playing and writing again, but only for fun this time. At the end of 2018, we spent about $1000 on new gear for me. My studio looked eerily similar to how it looked 5 years ago at the end of 2013 when I threw in the towel and stopped making music. But this time, something was different - I felt emotionally sober, calmer, and more joyful. I knew I was letting the music back in so I could create The Music Tarot, and this thought excited me greatly. I had never been surer of any calling. I hadn't written a single tarot song yet, but I knew in my bones, that I would eventually write them all. And I was right. In summer 2019 the floodgates opened, and I wrote the first 15 songs in 5 months. 2020 was a hard year due to the pandemic, and only 1 song came through. But then, 2021 gave me the next 16 songs. I was doing it after all, and I was thrilled.
I had overcome so much. I had finally enjoyed 7 years of peace. But I still couldn't quite relax. I was still wrapped in layers of caution tape, not trusting the stability and balance I had achieved. I couldn't help but wonder, "When will my body fail me next? When would the rug get ripped out from under me again?"
In 2021, while reflecting on my life's struggles and accomplishments, I told Miah that if I ever got cancer, I would choose not to treat it.
I would let it take me out.
He didn't object. He just looked at me, with complete sadness and understanding and said, "I know." Because he did know. He knew that I'd been through enough already, and that cancer treatment would be too much to ask of me.
End of 1 - Background