Seems I’m going to be wearing more one than one color ribbon…..

Two weeks ago, I found a large lump on my upper right thigh/hip/femur area, of about 8cm. It didn’t hurt and after googling these aspects combined, found that cancer was on the top of the list of likely suspects. But honestly, cancer is on every list so while I was a little worried I assumed that I was probably being paranoid and it was some sort of running injury.
Next stop was the GP. She basically told me it was probably nothing to worry about but given my history it would be best to have an ultrasound and possibly an MRI. The next day I had the ultrasound, and the technician told me it was inconclusive and that they recommended I have X Rays and MRIs. Fear started to set in at this point, but I reminded myself that ‘it is, what it is, and no amount of worrying will change that’.
On Friday the 3rd of October I had the scans, with my lovely friend Emsy in the wings for support. Poor thing was also suffering herself after wisdom teeth surgery! We continued to tell each other with enormous force that it was going to turn out to be nothing.
Then at 5.30pm that afternoon I got a terrifying phone call. It was my Doctor calling to tell me that according to the MRI results I (again) had cancer. The report read that it was most likely metastatic breast cancer, but if not it was a sarcoma. She suggested I get on the phone first thing Monday morning and book in with an Oncologist to get a biopsy done. I asked her if there was any chance it wasn’t cancer and she said yes but didn’t sound convincing.
I called home, family mainly and a few friends.  My sister decided that she didn’t want me here in NY without my family going through this and booked a flight to NY. I told nobody else at this point as I really wanted to have all of the information before sharing this news. My excellent running buddy and great friend forced me to continue marathon training and it was hard but I did it. I ran a half marathon on the Sunday of that weekend called Grete’s Great Gallop and it was in partnership with MSKCC, a cancer fundraiser. I stood at the starting line crying. I really didn’t think I would be doing the marathon but I decided to try hard in the race while I still could run.  I gradually told a few more NY friends over the weekend as I did everything to distract myself and stay away from Google. Because I had already read enough to know that either way my prognosis was not good.
My sis landed Sunday night. Emsy arrived 9am Monday and the 3 of us got busy on the phone. We managed to get into an orthopedic surgical oncologist at 12.45 that day which was incredible. They came with me and watched as my blood pressure hit 170/110.  I think the staff at the hospital were more worried about me having a stroke than having cancer.
The oncologist was excellent with me. He assured me that he doesn’t trust the radiologists diagnosis and that he would need to both review the MRI scans (not just the diagnosis) and do a biopsy. He also calmed me down somewhat by saying that the chances of metastatic cancer from breast to soft tissue is minuscule, it was more likely to be a sarcoma and that until he had seen the ultrasounds and MRI scans and performed a biopsy that there was still a chance of it being benign
On Tuesday afternoon, he performed the biopsy (even though he doesn’t usually see patients that day), during which he said that it was very hard and fibrous but that neither meant anything outcome wise. He told me that having seen the MRI scans he was still not 100% convinced of cancer but that we would need to take one step at a time and see what the biopsy revealed. He was worried about the size, but still not convinced.
On Wed and Thu, Bron and I tried to not think about the results as much as possible and walked the streets of NY, went to Aire Baths, checked out Brooklyn etc for like 12 hours a day. The retail therapy required during this period was definitely helpful for the state of NYs economy.
Late Thursday, whilst having a pedicure in Brooklyn, I had a call from the Oncologists nurse.  She said she was calling to update me and that the news was good so far. Initial pathology report shows no sign of malignancy or metastasis. There was still further analysis pending but this was incredibly encouraging. We made an appointment for this morning at 9.30am assuming all of the results would be in.
Friday was a good day, we really chose optimism as the only way to proceed. But I was still hopeful for a call confirming the results and when it didn’t come I knew I couldn’t really relax just yet. Nevertheless, we continued with a very busy schedule to distract us over the weekend. Actually my sister thinks life in NY is just like bootcamp after the amount of gym, swim and yoga visits I’ve insisted on.  And the green juice. And the sober October (which I decided to break on Friday night assuming the pending results would be good!).  I ran 18 miles on Sunday (13 of which were in another half marathon race) and felt incredible like I am very ready for the marathon. Then we treated ourselves to cocktails at the Standard and dinner at the Waverley Inn last night, where we got to hang with Keanu Reeves (not really but he was there).
On Monday morning, October 13th 2014, I got the final result by voicemail. I do not have malignant (nor metastatic) cancer. Rest assured I did a huge happy jig around my apartment. Such a huge relief, after imagining the worst.
What I do have is a rare but aggressive tumor called fibromatosis (also known as a Desmoid Tumor). I will need surgery and possibly some mild chemotherapy and radiation. It’s local but aggressive. So it wont kill me but it will keep growing and causing problems (and possibly recur down the track). In an older less active patient they would simply do a wide margin radical removal (think bigger than tennis ball size). But given how young and active I am they may do treatments aimed at shrinking the tumor before they do the surgery. I will continue to hang out at oncology wards for some time yet but I can cope with that.
But for now, it’s 20 days until the Marathon. We’ll figure out the rest after that. If you haven’t already, please do sponsor me and help us move toward a world without cancer (and desmoid tumors too).  One click here and you can sponsor away!

One thought on “Seems I’m going to be wearing more one than one color ribbon…..

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