Last summer
“Mo-o-o-o-O-O-O-O-o-o-o-o-mmm!!!” My newly-minted thirteen-year-old dragged out my moniker with all the exasperation his age can bring to verbal expression. I don’t remember my crime that elicited such irritation. Kirby hopped on his bike and took off, leaving me standing in front of the Country Store with a bag of snacks. Charming, I thought. What a lovely way to begin our first vacation in two years. I climbed aboard my bike and began the pedal back to the rental house.
We were in Sun River, Oregon: a lovely vacation community threaded with over 18 miles of paved bike paths. Lots of visitors park their car on arrival and don’t use it again until they depart. Families achieve this because by and large, Sun River is flat as a pancake. My personal plan for this vacation was to spend as much time biking and walking as conceivably possible.
The catch, I learned that first night, was the mammoth gap between what I believed possible and what I could actually do. As I biked back to the house, I discovered something rather dramatic: Sun River isn’t all flat. In fact, there is a very slight upward incline between the Country Store and our rented house. A person driving a car wouldn’t notice. A pedestrian wouldn’t notice. A bicyclist wouldn’t notice. Except: I noticed.
I noticed because I was unable to make my foot push the pedal down to make the wheels go around uphill. I sweated, grunted, panted, and finally cried because no matter how hard I tried, I could not make the bike go uphill. Even though it was a tiny little hill. If Guinness kept a record of the littlest hill, this hill would be a top contender. And I could not ride up it.
I pushed the bike home, getting lost several times on the way, frantic with worry that Kirby had also gotten lost. I burst into the house to find him and Roger calmly eating popcorn and watching television.
“Are you okay?!” I demanded.
Roger and Kirby looked at each other, slightly puzzled. “We’re fine.”
“Well. Well fucking done!” I screamed. I ran into the bedroom, threw myself on the bed, and sobbed.
Yes, it was incoherent to them as well.
The next day, I got an email from my endocrinologist telling me that I have severe adult onset human growth hormone deficiency. Before he tested me for this deficiency, he told me he would not treat me if I turned out to have it. Why? Because I am a breast cancer patient. Both the FDA and my doctor, who happens to be one of the leading experts on adult onset human growth hormone deficiency (I’d like to buy an acronym, Bob, but AOHGHD isn’t working for me…), do not like the idea of giving growth hormone replacement therapy to someone whose cells have a proven proclivity to go a little wild with the growth thing.
In other words: I was fucked.
I immediately called my doctor’s office and requested an appointment to go over the test results with my doc. I learned he was out of the country until September, and upon his return, he was booked up through the end of October. I asked if there was someone else who was covering his practice that I could see. I explained that my test results had upset me deeply and I wanted to discuss treatment options. I was told that nobody but my doc would discuss my case with me. Sobbing, I booked an appointment at the end of October and asked to be put on the waiting list for an earlier appointment.
A brief recap of the preceding five years.
Personal health issues:
- June 2007: Thyroidectomy for goiters
- November 2007: Hysterectomy for fibroids growing out of control
- June 2008: Oophorectomy for cystadenoma of the ovaries
- July 2009-November 2009: Lumpectomy for breast cancer, adjuvant radiation treatment. Ongoing oral chemotherapy to keep the sucker from coming back.
- (At this point, my cells have clearly shown they can go a little bonkers with the grow-like-crazy stuff.)
- June 2010: Concussion due to a trip-and-fall face plant on the front walk. The silver lining to this was it led to my quitting the soul-sucking job from hell.
Other life issues:
- November 2006: Roger was fired from his job. He became part of a startup software company that has yet to produce a living wage for any of its four partners. I assumed the position of Primary Wage Earner, he assumed the Primary Care Giver role.
- Fall 2009: Kirby begins exhibiting symptoms of illness.
- February 2011: Kirby is finally hospitalized for three weeks. After his discharge, he continues to receive treatment. He is making the kind of progress that makes me weep with pride almost daily. That’s all I’ll say about his issues because that’s his story to tell. Parenting a child with a disabling illness is truly the hardest thing I have ever done.
I spent most of that vacation online, researching growth hormone deficiency. My first question was: WTF? I’m all done growing. Why do I care about growth hormone? Turns out that in adults, growth hormone helps the body produce muscle and break down fats. Oh. Now, I care a lot. Without this hormone, I’ll have more fat and less muscle. Bah. Plus, because the heart is a muscle, there is increased morbidity due to cardiac issues.
Adult Growth Hormone Deficiency (GHD–a little acronym, thanks) has a symptom set similar to those common to women in mid-life. Notably, its symptom set is remarkably similar to thyroid-free women leading the estrogen-free breast cancer patient lifestyle.
Here’s a symptom list* with an example of my experience of the symptom.
A higher level of body fat, especially around the waist
Um, sure. I gained 30 pounds, largely in my abdomen. My neck, head, arms, and legs still look normal, and I have always worn loose clothing, so nobody noticed the 30 pound gain.
Anxiety and depression
To say that I’ve had issues with anxiety and depression is like saying Noah had issues with water. I have struggled with depression all my life. Each iteration has been a little different. This iteration brought constant thoughts of death along with a physical pain, as if a corkscrew were twisting through my gut, doubling me over as it pulled tighter at the cork.
Changes in the make up of the blood cholesterol.
Yes. Overall up from 160 to 203.
Decreased sexual function and interest
Like I’d notice after all my estrogen went away?
Fatigue
Gosh. The non-optional 8:30 bedtime was a symptom? Who woulda thunk it?
Feelings of being isolated from other people
Funny how when you’re feeling fat, depressed, and exhausted, you don’t generally want to go to book group or call a friend.
Greater sensitivity to heat and cold
Um, sure. And I would differentiate this from my thyroid issues exactly how?
Less muscle (lean body mass)
Does less muscle go along with weight gain? How would I tell?
Less strength, stamina and ability to exercise without taking a rest
This symptom gave me more clues. Running errands at lunch was not possible. Working a 4-day week was great, I could spend the next three days sleeping and recovering so I could do it all over again. I could no longer carry a full basket of clean, folded laundry upstairs without pausing to catch my breath halfway.
Reduced bone density and a tendency to have more bone fractures
Due in part to the aforementioned estrogen-free lifestyle, I have lost 20% of my bone density in the last two years. Luckily, at age 50, I had the bone density of a 19-year-old. So, while bone loss has been significant, I’m still within normal ranges for my age.
We returned from vacation and I went about my life, waiting for that end of October appointment. About a week after we got back, I felt particularly awful at work. My hands were tingling and numb. I was dizzy. I fell over and a wall caught me. My neck and shoulders hurt more than usual. I called my doctor’s office and begged to see any endocrinologist, immediately. The receptionist told me to go to the emergency room.
At the ER, an EKG showed an anomaly in my heart. My T-waves were inverted. This is really bad, but I forget why now. I was held overnight. I was still alive in the morning, and now the EKG was showing normal results. I was instructed to follow up with my regular doctor.
I filled my regular doctor in on the situation and burst into tears. She is nothing less than a lioness of medical care. She sent me for a stress echo cardiogram because she thought there was nothing wrong with my heart. She also contacted my oncologist, looping in my missing endocrinologist, to request that he comment on treating the GHD given that I don’t have any active malignancies and have a deficiency level that is defined as “severe”. She assured me that if my current doctors would not treat the GHD, she would assist me in finding care elsewhere, either in California or Canada. I was looking at the possibility of becoming a medical tourist, wondering how I was going to do that and continue supporting my family.
I flunked the stress echo. I added two cardiologists to my medical team. They ran a regular echocardiogram because stress echocardiograms can be unreliable and a regular echocardiogram is less stressful than an angiogram. The goal of the regular cardiogram was to confirm or deny the results of the stress echo. I passed the regular cardiogram with flying colors. They put me on statins to lower my cholesterol, beta-blockers to reduce my blood pressure and let my heart rest between beats. I argued hard against the beta-blockers: my BP is generally about 105 / 60. High BP was not the issue, and the side effects of beta-blockers include depression and fatigue. Finally I agreed to try the beta-blockers. A month later, all seemed well, so the cardiologists tossed me back to the care of my regular doctor.
In the meantime, I continued to make a total pain in the ass of myself at the endocrinology office. My appointment was moved forward to early October, but after the cardiac incident, I harangued the poor receptionists until they put me on a “Doctor will call” list. I managed to get in to see my doctor the third week of September, immediately following his return to the country.
Roger went with me. I wept and begged for GH replacement treatment. I told him I was afraid that the GH deficiency had caused my cardiac event. He replied, “I don’t want to be the guy who prescribes the drug that brings your cancer back.”
I replied, “That’s not actually your decision to make. I have no active malignancies, and that’s the only FDA contra-indication. You won’t be prescribing off-label. If the cancer comes back: so be it. We’ll fight it then. But I cannot continue to live my life the way it is now. There is no joy, no energy, and frankly, I wish I were dead most of the time. Maybe if the cancer comes back due to GH treatment, I’ll have a shorter life. But I’ll take it shorter and better rather than longer and awful. I’ll take quality over quantity any day of the week on this one.”
My oncologist had weighed in and said he had no issues with using GH replacement therapy to restore me to normal GH levels.
The endocrinologist agreed to try treatment for 9 months to see if I showed any improvement without the cancer returning. I agreed to faithfully honor my adjuvant cancer treatment program.
Thus began the insurance company struggle. Treatment can cost up to $33,000 per year. Their initial response, which took over a month to give, was to refuse to pay.
This, at least, made me eligible for free treatment from the drug company, who has a program for people who are below a particular income level and don’t have insurance coverage. I started treatment on November 1st. I was told it could take 6 to 9 months before I noticed any improvement.
I did not notice much improvement at all in the first three months. Then, someone sent me a link to the NY Times article on the damaging effects of statins on muscles. SHIT. I called my regular doctor and asked her if I could drop the statins. My last metabolic panel had showed an overall cholesterol of 120. She agreed that we could drop the statins and beta blockers.
Now that I’m off them, I am starting to see real change. I can stay awake until 11pm. I can run errands at lunch. I can visit with a friend after work. I don’t cry as often. The gut-twisting pain from depression is gone. I believe I’m strong enough now to take on the Primal Challenge to see if I can start to regain my strength. I’m not sure, but I’m going to try.
I have been in a very dark place these last 9 months. The worst part of the dark place has been the hopeless inability to push the bicycle pedal to make the wheels go around uphill.
I have a much-loved friend who says, “It’ll be okay in the end. If it isn’t okay, it isn’t the end.”
And so, this is not the end.
*Source: http://www.cedars-sinai.edu/Patients/Health-Conditions/Adult-Growth-Hormone-Deficiency.aspx
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