Saturday, July 18, 2015

Chondrosarcoma - Alrica

After all of the back and forth with the pathology, we were pretty confident that things were benign . . . until I got a call from my surgeon's office that they'd like me to come in. That is never a call you'd like to get. One of the oncologists from Penn who had looked at my biopsy samples diagnosed me with a Grade 1-2 Chondrosarcoma. With only a week until the scheduled surgery and my surgeon on vacation, they offered to push back the surgery. That was the last thing I wanted so we pushed ahead and started thinking through how to plan the next couple months. Chondrosarcoma is an extremely rare cancer of the cartilage. It falls under the group of bone cancers but has very different characteristics. It tends to be slow growing and less likely to spread and almost entirely removed by surgery.  It doesn't respond to chemo or radiation.

Canceling our trip was never really a discussion, but we learned that our surgeon would want three month follow-up scans for years and that there may be significant recovery time. The surgeon agreed to meet us on Saturday to go over all of our questions, and we were back to waiting and more research. Happily, my mom was able to fly up and stay with us. Her background as an RN who had dealt with post-op and oncology helped me talk through all my questions and concerns.

Our meeting with the orthopedic surgeon was pretty hard. We talked through the plan of attack and best and worst case scenarios. This would be the 5th or 6th one of these that he'd dealt with but given how rare they are, that isn't bad. Based on where the tumor was sitting, his plan was to open me up and saw through the superior pubic ramus and remove several inches of bone along with the tumor. The vascular surgeon would handle any vascular interference and move the veins out of the way. One of the likely side effects would be life-long swelling due to vascular damage or nerve damage. Worst case scenario would be if they found vascular interference with the main femoral artery. The likely treatment would then require amputation of the entire leg.

5 AM on Monday morning finally arrived. After getting up and showering with the special soap, I kissed the kids goodbye and Erich and I drove into the hospital. It was a couple hours with various medical people hooking me up to IVs, answering questions, and then just emptiness until I woke up in a hospital room with my family around me.

I was sleepy and pretty confused upon waking up. Everything seemed to move in slow motion - especially me. I got a brief report that everything had gone smoothly and I was out again. By early afternoon, I had seen both surgeons who had nothing but good things to report. The veins and arteries had gone right back to normal, they felt there was no damage to the nerves, though I'm still numb throughout my upper thigh, and most important, the tumor came out as one piece and they think they got it all! Now the healing begins.

At a week and a half post surgery, I'm slowly trying to lesson my dependence on pain meds. I'm also trying to find a balance between the surgeon's advice to not overdue it and to be up and about as much as possible. While the bone that was removed won't ever grow back, the surrounding bones will strengthen to compensate if I continue to make them work. Whether I'm laying in bed or up and walking with crutches, by end of day, I'm physically exhausted and yet sleep is not coming easily. I  can only sleep laying flat on my back and I still frequently need help getting in and out of bed as my right leg muscles are stressed and sore and just refuse to move on command sometimes.

And I try not to dwell on the emotional side of things. I'm part of an online support group for people with chondrosarcomas - there aren't any real life support groups because of the rarity of the disease. One of the recurring themes with the group is how so many of them feel "lucky to be alive." I don't feel lucky.  To me lucky implies that I had done something to deserve this and it worked out okay despite my foolish choices. I feel angry that this has happened to me and I hate how it has impacted myself and my family. I hate that this will always be hanging over me. I will need to do follow-ups and I will have this "pre-existing condition" forever. I'm hopeful that the pathology report will determine that the cancer is gone, or maybe that it wasn't there in the first place and I can heal and put all of this behind me. I'm working on not wasting emotional energy on my anger.

In the meantime, I wait through this limbo and plan through different scenarios based on Tuesday's post-op check. 

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