Tuesday, June 24, 2014

Perfunctory

My husband and me with our two pugs, June 2011
That was the word my doctor used to describe my next visit in two years. Perfunctory. Meaning that we'll do the checkup, just because that's what we've been doing. But essentially, I am officially cancer-free.

I wasn't as nervous this time around. I'm so lucky to able to go the Mayo clinic (and the University of Iowa before that). I've been in the care of some of the best doctors in the world. But man, they really put you through the wringer. Blood tests, MRIs, x-rays...then a nerve-wracking wait for the doctor to come in and tell you the results. This time the resident came in and told us right away that it was all good news. Whew! We were so relieved. I do have to comment on how weird it is seeing slices of my pelvis as the doctor scrolls through the MRI images though (it kind of looks like steak...).

Like I said, I wasn't as nervous this time. It has been eight years since my last surgery removing the last of that stubborn sarcoma. Before that, it was six years. That was a huge milestone, because instead of having check-ups every year, I could now go every two years. Before that, it was check-ups every six months. It's just one milestone at a time. Two years seems like such a long time, but I know it will be here in the blink of an eye. And then hopefully those check-ups will go to every five years.



I have a disease called  Multiple Hereditary Exostoses (MHE), a condition in which chondromas (benign cartilage lumps) grow on my bones. I have small and sometimes large bumps on my ribs, arm bones, leg bones, pretty much everywhere. I also have some arthritis and bone deformities. My mom and sister have these bumps as well, and my grandfather and great aunt before us. This disease has had a profound effect on our family.

Although most of the time the bumps are not cancerous, I wouldn't say that MHE is harmless. I know a lot of people with the disease can have much difficulty and pain associated with it. Many people require surgically removing the lumps in order to be able to keep active and function normally. My sister at one point was considering having one removed on her knee. It was interfering with her ability to run track in high school, but luckily, in the end it wasn't necessary.

My mom is a paraplegic because of MHE. When she was young, she had a chondroma removed from her spine because it was cutting off circulation to her legs. All was fine until about 30 years later when her spine started to collapse in the place where the bump was removed. After several attempts to correct this surgically, she ended up paralyzed from the chest down. I was around ten years old at the time, my sister seven. So no, MHE is not harmless, even if they aren't cancerous.

Then there's me. One of my exostoses was cancerous. Chondrosarcoma. It was located on my pubic bone and growing down the middle of my leg, not the most noticeable of places. The doctors believe that it was so slow in growing, that's also why I didn't notice it until I started having pain in my knee. The tumor was pushing my leg out of alignment and displacing the pain to my knee. The first x-rays were actually done on my knee. The radiologist noticed the chondromas on my bones and recommended a full body scan, if nothing else than to have a baseline to notice any changes in the future, because of the risk of malignancy. That's when they discovered the "starburst" in my pelvis.

Traced from Gray's Anatomy - A normal pelvis vs. my pelvis (with most of the rami removed)

About three months after this discovery, my husband and I were married. About three months later, I was having a biopsy and scheduling surgery to remove the tumor. In total, I had five surgeries to remove the tumor, diseased pubic bone and recurrences over a period of seven years. Not exactly the way my husband and I were expecting to live the first years of our marriage. Since then we've also had to deal with my husband's Multiple Sclerosis (MS) diagnosis.

Despite all that we have been through, my husband and I are still going strong. This week we not only celebrate my eight-year cancer-free anniversary, but our 15-year wedding anniversary! We have so much to celebrate. My husband is doing really well on his new MS medicine and I get around remarkably well for having most of my public bone removed. We are both happy with our jobs and have such caring family and friends. Our life is most definitely not perfunctory. (My next check-up can be though.)

1 comment:

  1. Wow what a great post. You and your husband are troopers. I'm a 14-year cancer survivor so I have some understanding of what you've dealt with. Keep up the positive attitude!

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