Friday, August 20, 2010

A Tale of Two Tumors . . .

. . . and how i lost my right foot, but gained so much.

I provided a little bit of background in one of my earlier posts about my diagnosis with epithelioid sarcoma (or something very closely resembling it), and my surgery to amputate my right foot, but wanted to also share a little bit more about the whole process of becoming a "cancer survivor," as well as the incredible amount of good that has come from this whole experience. As i mentioned in my previous post, i first learned i had a tumor after experiencing pain in my right big toe for a couple of months, and finally going to my Dr. to get it checked on. I'm grateful that Dr. Backman did an x-ray and found the pathological fracture, because i have a good friend who was also experiencing similar pains in his toe and his doc just told him it was probably gout and he ought to get some shoe inserts.

X-ray showing the pathological fracture in the second bone of the big toe.

MRI showing not much where there should be a bone.

Dr. Backman, however, found the fracture, and immediately scheduled a series of other tests, x-rays, MRIs. etc. to check for other signs of tumors in my lungs or other areas. He also immediately referred me to an orthopedic specialist at the UofU orthopedic center. I never did meet with this specialist, however, because after he saw my MRIs he immediately scheduled an appointment for me with Doc Jones at the Hunstsman Cancer Center. I must preface the next statement by saying that the doctors, staff, and nurses, with a few exceptions, in the university system have been incredible. I have an incredible amount of gratitude and respect for their experience, professionalism, and interest in the patient. I also appreciate the speed with which they have attended to me, but in this one case, both the speed and the way in which i first heard the word "cancer" were a bit jarring.
Like i mentioned, Dr. Backman had ordered a number of MRIs and had referred me to the orthopedic specialist. They did a set of MRIs one evening, and then had me come back first thing in the morning for another set with the contrast. After the MRIs i was supposed to meet with the orthopedic specialist to go over what he and the radiologists had seen. I finished the MRI, changed clothes, and was directed upstairs to wait in the lobby for my meeting with with orthopedic specialist. While sitting there, my phone rang and i answered it. On the other end a young man informed me that he was the scheduling assistant for Dr. Kevin Jones at the Huntsman Cancer Institute, and wanted to schedule an appointment for the next morning. This was the first time i had actually heard the word "cancer" used in relation to my condition. The second came about two minutes later when the orthopedic specialist sent his assistant out with a yellow post it and a phone number for Dr. Jones' scheduler at Huntsman. She again told me that the orthopedic specialist was referring me to Dr. Jones at the Huntsman Cancer Institute, told me to call the number to set up an appointment, handed me the yellow post-it, and sent me on my way: the second time I heard the word cancer mentioned in relation to my condition.

I was a little bit stunned. I walked out to my car alone, sat there in the front seat for awhile, then started to drive. T-dub was in Boise because she had stayed there with an aunt and uncle after the Elkhorn Classic to meet with her coach before heading to Bend for Nationals. I knew her biggest race of the year was coming up, so i didn't want to call her and tell her that i might have cancer. But i did call my dad, who was on a cruise somewhere in the mediterranean with two of my brothers for work. I got his answering machine and started to leave him a message about all that had transpired in the last 60 minutes, but before i could even get a sentence out, i just started to cry, i should say balled, cuz it was more than just a teary-eyed cry. I finally calmed down enough to talk coherently and let him know what was up. He called me back an hour or so later and then shared the news with the rest of my family.
The next morning i went and met with Dr. Jones. He explained best case and worst case scenarios (best case: infection; worst case: cancer and amputation) and stuck a big fat needle into my toe to try to get enough of a sample from the tumor to do a biopsy. Unfortunately this didn't work so we scheduled a surgery for the next friday. He also told me that all my other x-rays and scans weren't showing any other tumors or growths in my lungs or other parts of my body, but that there was a 2nd little something in the soft tissue in the ball of my foot that the MRI had picked up. He wasn't too worried about this, however, until we knew what had caused the pathological fracture in my toe.
In the meantime i got to go to Bend to watch T-dub race at nationals and put in an incredible race, placing 9th overall and 2nd in the U23 group. I'm so grateful for this opportunity to spend the weekend in Bend with her.

Next friday rolled around and my dad and T-dub accompanied me to Huntsman for the surgery. Going in i thought they were just going to cut in, get a sample of the tumor for the biopsy, and then sew me back up, but i guess once they got in, got a little sample, and put it under the microscope they were confident enough that it was benign that they just went ahead and scraped it all out and gave me a bone graft to replace the bone were the tumor had decayed it. After the surgery Doc Jones met with my Dad and T-dub, explained the surgery—he compared it to filling in a cavity where the tumor had decayed the bone, so they drilled and scraped it out, and then filled in the missing bone with a bone graft from a cadaver. Here's T-dub's rendition. He also told them that he was 95% sure the tumor was "big cell tumor," that it was benign, and that for the time being he wasn't too worried about the other growth that had shown up in the MRI. He told me to stay off my foot for a couple of weeks, and that he'd call me as soon as he got the biopsy results back.
In the meantime, T-dub was invited to race with the U.S. Women's National Team in Europe and the morning she was leaving for Italy, Bunny was struck by the truck and died. Thoughts of the tumor were relegated to the back of my mind. I was still limping from the first surgery at the funeral, especially because i was wearing nice, sunday shoes that weren't all that comfortable, but that was an irrelevant discomfort in the face of what my brother was facing.
A few days after the funeral Dr. Jones finally called. It had been almost two weeks and he apologized a great deal for taking so long to get back to me, but explained that there was some significant disagreement about what the tumor was.
He explained that two of the pathologists at the Univ. of Utah thought the tumor was a "big cell tumor," basically a benign tumor, but that it had some weird inconsistencies with that diagnosis, so they had sent it off for some second opinions just in case. The second and third opinions came back from some really famous, big name guys (whose names i can't remember) in other states that the tumor was a sarcoma. One called it ephithelioid sarcoma, but since it didn't fit the profile of this either (it didn't knock out the INI1 gene like epithelioid sarcoma usually does) he just gave it a new name (he's that big in the field, he can just make up names for stuff). The other soft-tissue tumor big wig pathologist agreed that it was a sarcoma, but disagreed that it was as aggressive or bad as epithelioid sarcoma. So, as Dr. Jones explained, "this is really frustrating and i wish i had a better answer for you, but you may have cancer, and you may not have cancer, we don't know yet."
We determined that the best course of action was to get some more MRIs, bone scans, and CT scans of the rest of my body, and to get a biopsy of the 2nd thing floating around in the middle of my foot. If the 2nd little growth was the same as the first, then regardless of what we called it, we would know that it was metastisizing and growing, and thus a dangerous cancer. So he scheduled more tests and scans and a second MRI of my foot to get another look at the other growth.
I spent a good amount of time during the next couple weeks in the hospital drinking nasty fluids, getting IVs with contrast and even radioactivity, and sitting and lying in lots of spinning, whirring big machines. I even got to sit on one machine as it took pictures of the radiation as it moved around my ass, kind of like sitting on a xerox machine with your pants down, just a lot more advanced and technical.
At the end of the week after all the tests were done i went back to meet with Dr. Jones. He told me the good news and the bad news: the good news, the rest of my body was clean. No tumors were showing up in my lungs, lymphatic system, or anywhere else. The bad news: the 2nd growth in my foot had increased in size, almost 8x in total mass, since the first MRI at the end of June.

MRI images of the 2nd tumor (S.D.B). First MRI from June is on the left, 2nd MRI from beginning of August in on the right. You can see the tumor has increased in size over those few weeks.

This, he said, most likely meant it was also a tumor, and that the fast growth rate was alarming. We began to talk about different options, including amputation of the right foot to keep the cancer from spreading up the lymphatic system to the lungs. T-dub was still in Europe so i requested that we remove the 2nd tumor, do a biopsy to make sure, and then i could make a decision about the best course of action after we knew for sure and T-dub was home and she and i could talk about it. So we scheduled surgery for the coming friday to remove the 2nd tumor in order to get a biopsy.

The surgery was pretty straight forward, and i was at dinner with some friends later that evening. The most annoying bit was that the incision was on the bottom of my foot, which made walking rather uncomfortable.

This last surgery had been friday morning and T-dub got home from Europe the following tuesday night, so Dr. Jones said he'd try to get the biopsy done by tuesday so that T-dub and i could come and meet with him on wednesday and decide a course of action.
Just an hour or two before T-dub's flight landed Dr. Jones called to tell me he had good news and bad news (it's always good news and bad news with this guy). The bad news was that the biopsy had shown that the tumor number two was in fact the same as tumor number one. I should interject here to clarify that i have since named them D.B. (dirty bitch or dirty bastard, whichever you prefer) and S.D.B. (son of a dirty bitch/bastard). We don't really know which one came first, but i have taken to refer to the big tumor in the toe as D.B. since we found him first, and tumor no. 2 as S.D.B. Anyway, the biopsy confirmed that S.D.B was the same as D.B., and hence the good news: this made our decision making a lot easier. By that he meant to say, it's a lot easier to decide to cut your foot off when you have a more solid understanding that a) the cancer has the ability to metastasize and has in fact done so, and b) it is growing at a rather fast rate. As Dr. Jones explained, regardless of what we call it, and even if we can't totally agree on a specific name, we know it is capable of fast growth and replication, and thus poses a pretty serious danger to the rest of the body unless it is stopped. And the only option for stopping it: remove it from the body. Unfortunately these types of sarcoma don't respond well to either radiation or chemotherapy. I thanked him for the call and confirmed our meeting tomorrow after T-dub was home.
When T-dub and i went to meet with him the next day he caught her up to speed on all of the recent findings (last she had heard from him, he was still 95% sure it was a benign tumor). Although i had given her some information while she was in Europe, i didn't lay it all out there. I wanted to wait until she got home for that. We talked about a lot of the options, again including radiation therapy, but ultimately decided that given the aggressive nature of what was most likely some type of epithelioid sarcoma (or something very similar to it) amputation was the best option. And so, just like that, we scheduled the surgery for friday, a mere three days later. Now a week and a half later, i'm back to teaching at the U., putting some short efforts in on the bike trainer, and mostly being rather impatient with the healing process.

It's odd now to think of myself as a "cancer survivor" (and i say "survivor" with all the hope and optimism in the world that in fact D.B. and S.D.B didn't leave any other little offspring running around in my blood stream to pop up somewhere else). I almost feel like a poser. I haven't had to struggle with chemotherapy or radiation. Every time i went to the Huntsman Cancer center and could walk on my own, without IVs attched to my arms or oxygen tanks following behind me i coudn't help but think that my condition doesn't even begin to compare with what so many others go through. My sister gave me a yellow "Livestrong" bracelot, and i wear it proudly now, but have yet to feel like i've earned it. Like i've earned the moniker "cancer survivor." I had my right leg amputated, but my suffering has been minimal (unless you count the phantom pain and the 45 minutes before the meds kicked in after the surgery when the epidural didn't work).
I lost my right foot, but with the advances of prosthetic technology, i'll be able to live my life with some slight inconveniences, but not much different from how i lived it before i was diagnosed with cancer. But so many aren't as lucky, and i intend to honor those whose struggles eclipse mine (including my brother Luke who lost his beautiful wife this summer), with how i approach this small handicap and how i move forward to live with as much beauty and strength as i can.

Thank you everyone who has sent love and support in anyway over the past few weeks. I intend to write more about the incredible community that i have around me in the future, for you all must be honored for all you have done, but in the meantime, this post has gone on far too long, so hopefully a mere "Thank you!!" will suffice for the time being.

Thank You!

Disclaimer note: although i'm a Dr., as any one of my brother's will be happy to remind you, i'm not a medical doctor and certainly not a radiologist, so i may have drastically misinterpreted the x-rays and MRIs that i posted here. As far as i could tell, those little white dots are D.B. and S.D.B, but i could be totally wrong, so if someone who knows better sees i've made a mistake, feel free to correct me.


Chiara said...

Hey Matty Matty!!!:):) I was about to write on your wall and ask you how it is going ...and then I saw your update on your blog. I'm glad to know that your healing process is going good. You are awesome!!I love your positive attitude.Keep in touch. Ti voglio bene:):)

Whitney said...

Matty! Thank you for giving us all perspective. I'm humbled when I read this and inspired by you. Much love and gratitude.

Ms. Fu-Daddy said...

Thanks for sharing!! This is dope!!

rabidrunner said...

Hi. Mr. SkiBikeJunkie mentioned you a few days ago, and I've read your story for hours -- have done little else.

You are seriously bad ass.

Thought about writing a book? Your insight is brilliant. I am only allowed to use that "brilliant" word three times a year, and you just earned my last ration. (I have this thing with superlatives and how frequency only dilutes superlatives. Hence the limitation.)

Anyway, glad to see you're doing well. I feel lucky to have stumbled upon your story.