I had been fighting constant back pain for months with massage and chiropractic therapy, when I finally decided to ask my family doctor what else we could do to find and eliminate the source of my pain. As a working mother with three young kids, debilitating pain was something I just didn't have time for. We began with a frontal x-ray. It looked pretty normal, but then, you would have needed a full spine image to count all the vertebrae before you could tell that one was missing from the picture. Not seeing anything remarkable, I was referred for an MRI next. The side images showed the surprising truth behind my chronic pain: my back was broken. My third thoracic vertebra had been internally weakened by a hemangioma to the point that it collapsed. A needle biopsy of this vascular growth was ruled benign, which I question to this day.
The First Surgery on a "Benign" Tumor
My first back surgery was to remove the crushed bone bits and insert a cement balloon to help occupy the space once taken by T3 bone. The day before the surgery I went to work as normal. I had a full-time job, and was the primary supporter of my family, although my husband also worked evenings and weekends to help cover the needs of our seven year old son and three year old twin daughters. That day, in August of 2011, was the last full-time day I ever worked.
I viewed the surgery as a remarkable success, since my back pain was completely gone from the moment I woke up. Three weeks later, however, when I was tentatively returning to half-days at work, my world started coming apart at the seams when I rapidly lost the use of my legs. Emergency MRI revealed that the remaining bone in T3 had failed, crushing what was left of the vertebra and destroying the cement balloon. Cement and bone debris were squished against my spinal cord, causing nerve damage. There was also considerable swelling at the site, so I was put on decadron, a steroid that immediately helped reduce the swelling and allowed me to regain almost all the feeling in my legs and feet.
I began physical and occupational therapy via home health care to deal with the mobility limitations, and that was working well until I was removed from decadron. Whenever I was off the steroid for a few days, the pressure on my spinal cord would become too great and my legs would stop working again. I was ultimately given a referral to a new spine surgeon, who was confident he could help me get off the roller coaster of walking and not walking.
The Second Surgery
In November, I had my second spine surgery, with multiple laminectomies and titanium rods to induce fusion of T1-T5, intended to stabilize the region around T3 and prevent further bruising of the spinal cord. After a few days in neurosurgery recovery, I was transferred to in-patient rehab to relearn how to stand up and walk. It took until almost Christmas, but I finally went home on December 23 using a walker and planning to continue physical therapy via home health care again. Much had been sacrificed to stabilize my spine: most of the skin on my body below T3 was "asleep" and partially or completely numb; I missed my son's birthday due to a post-surgical complication of multiple blood clots in my lungs; and suffered from humiliating difficulties in the areas of bladder and bowel function. But at least I was walking, and steadily improving, and going home for Christmas. The joy lasted until New Year's Day.
The Third Surgery
Over the holiday weekend, during which time I didn't receive home health visits, my legs once again rapidly became numb and useless. I could walk 10 feet with a walker on Friday, and on Sunday I could no longer stand even with assistance from my muscular husband. When my therapist arrived on Tuesday, she sent me straight to the ER. My neurosurgeon came to see me after I'd had another scan. Some kind of mass was pressing on my spinal cord, and he felt we should immediately operate to discover the problem and relieve the pressure on the cord. I agreed, so on January 4th, 2012 I had my third surgery. This whole problem had been caused by a supposedly benign tumor in T3, so I was completely shocked when I woke up from recovery and the neurosurgeon explained that he'd found two tumors that sprung out of the wreckage of T3 and wrapped around to press on my spinal cord from two sides, pinching it between them. He had removed as much of them as he could, but being vascular tumors meant they bled profusely and their delicate location made them not completely operable.
Diagnosis of Epithelioid Hemangioendothelioma
A few days later, a hematology/oncologist dropped by my room to confirm that I had malignant Epithelioid Hemangioendothelioma. It took me three days to memorize that cancer name, during which time I struggled to come to terms with the fact that I had woken up with no feeling in my legs, and would have to start all over again with the learning to stand, walk, toilet, etc. I have one of the rarest forms of one of the rarest cancers: EHE accounts for less than .01 percent of the cancer population, and most of those are primary in the liver or lungs. Having one start in the spine instead of soft tissue made it even more rare and complicated. Less than 1 in a million... my husband joked that he always knew that about me.
About two weeks after the diagnosis, when I was sufficiently healed from surgery, I began receiving radiation five days a week. Doctors seemed pretty confident that this would help shrink my cancer, and also were in good spirits because the mitotic rate of my tumors was quite low, making it unlikely to continue growing any larger. Due to complicating genetic mutations that cause blood clots, I am ineligible for relatively new and exciting sarcoma treatments using Avastin to prevent vascular growth.
I remained hospitalized in rehab during treatment, trying to adapt to my disability, but nerves regenerate very slowly. My employer had been holding out hope as long as they could, but finally had to terminate me after six months of not working. I saw my children one or two times a week, my husband four or five times, and we relied heavily on the generous support of family and friends for groceries and gas money and free child care. I also had AFLAC and employer-paid long term disability that helped with my expenses. But my nerve recovery was just too slow - I still couldn't bend my knees, sit up without help, couldn't even wiggle my toes.
In February it was determined by hospital and insurance coordinators that I was not sufficiently mobile or improving enough to continue justifying expensive in-patient therapy. They did not believe I was going to regain more nerve sensation or control. My neurosurgeon was extremely apologetic - he had done his best and hoped I would have a better outcome, but it did not appear that I would ever walk again. I was moved to a skilled nursing facility (SNF), an "old folks' home" where I was the youngest patient by at least twenty years. It was absolutely the lowest point in my life so far.
Every week day in the SNF, I would choke down a few bites of breakfast (the food there was almost universally inedible to me, it was really disgusting), have a little occupational therapy, a little physical therapy, eat a few more bites at lunch, and then get transported back to the hospital for radiation treatment. From the first spine surgery to the end of my SNF stay, I lost more than forty pounds. Quite a bit was muscle loss, which was unfortunate, but it certainly didn't hurt to lose any cellulite that went with it. About a week after my 33rd birthday we celebrated the completion of my radiation treatments. From then to now, we have continued with only periodic monitoring by MRI, and there has been no change in my EHE - no shrinking, but no growth, and no detectable metastases.
In therapy I began using a special machine that forced me to stand up, and regained the ability to voluntarily bend my legs at the knee. A few days after that I also regained the ability to flex my ankles up and down. These improvements made it possible for me to escape from the nursing home and return to a rehabilitation hospital. It had only taken three more weeks longer than the time the first hospital and insurance experts had given me to recover.
Once I was back in a proactive, high-tech rehab environment, and back to several hours a day instead of the 30 minutes a day I got in SNF, my recovery picked up speed. I began standing without a machine. I began sliding myself from bed to wheelchair without helpers. After thirty days, insurance bumped me out of in-patient care again, but allowed that I could continue at that facility as an out-patient three days a week. I was finally going home. Less than a month later I got off the catheter and began using a commode. I continued to practice standing. And in April of 2012, the woman who would probably never walk again started walking.
Today I can do more than most people ever thought, but there is still so much I would like to have back. I have regular check-ups with oncology to keep an eye on my cancer, and I work on making my body as strong as it can be in case the fight against this disease escalates again. I can walk decent distances with the guidance of canes for balance, but require a wheelchair or access to other seating to rest for long distances. I can manage a few steps when necessary, but routinely climbing or descending a whole flight of stairs is impossible. Unlike my first spine surgery, I have had constant back pain ever since the second procedure. On good days it remains around level 3, which I tolerate without narcotics, but if I am too active, if I walk too much or spend too many hours sitting upright without laying down, it gets much worse and I need hydrocodone. Sensation has returned to most of my upper body, but is still abnormal in the skin of my legs and feet and around the surgery scars. I am unable to return to work, and until we manage to sell our townhome, remain confined to the living room/kitchen floor of a 2 story house. We had to gut the living room furniture to accommodate my adjustable hospital bed, wheelchair, and bedside commode. But at least I can walk, and take care of my own personal hygiene needs, and my cancer seems to be dormant, and while we may not know how long it will give me, we're going to make the most of whatever we can get!
Thoughts for New Patients and their Families
If there's one thing I've learned from this experience, it's never give up. Don't let anyone tell you what you can't do, and always engage yourself in your own care as much as possible. I studied everything I could, I listened attentively and questioned every specialist, I paid attention to what the nurses and aides were doing, learned the names and dosages of all my meds and what they look like, and sometimes caught important oversights or errors by doing so. I pushed the limits of hospital administration and insurance case managers and advocated for my best interests, never allowing them to relegate me to lesser care without at least a fight first, and then proactively pursuing them for better care when I made improvements that warranted it. I never stopped pushing my body to give me whatever its best performance for that day could be. And I clung desperately to my sense of humor, and my psychologically therapeutic need to write about my experiences, by sharing the journey's ups and downs on a public blog, hoping that it would inspire someone else to buckle down and work hard and smile their way through their own tough fights. You are your own best hope for survival and recovery!
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Copyright © October 2014 Liddy Shriver Sarcoma Initiative.