Please take a minute and check out my friend Justin’s story. There’s a lot to be learned here, he gives great advice, and a pretty tough look at what young cancer does to someone and their loved ones. And please check out the link he provided to his fiancée Bethany’s blog. I only got to read the one post so far but she was spot on! It sucks that others are going through this, but it’s been a privilege to muck through this alongside Justin and an honor to pray for him and Bethany as they are starting a (long!!) life together.
When Kim presented the chance to tell my story, I jumped at it initially. I assumed it would be cathartic and a learning experience. As I mentally prepared to write it all down and later type up these words, things got much harder. To some extent, it feels like I’m writing my own obituary. However, and I know some people frown on this, I recognize how much this experience has made me grow.
I contacted Kim sometime after she became stage 4 (I think). I remember an exchange where she told me (in some words) that she thought I was tough for not “coming out” about my own cancer. I felt quite the opposite – admiring her own strength in being able to share it with everyone and blog about it. Most days, I just want to forget about it and fortunately, I have that ability in some ways (It rarely works out). But if you’ve ever dealt with cancer, you know how tough and raw it can feel to discuss it over and over again, with the same questions, bringing up the same fears. And for that reason, I suppose blogging (I have an email chain instead), it makes sense. I’ve never kept it a secret, but I’ve chosen to soldier on in my own way.
The relatively short version of my story is this: I am fair skinned and reasonably “moley.” Not significantly so, but enough that you should watch out. In about the summer of 2013 I broke a toe nail in a very odd fashion–it cracked in the middle, apparently caused by my golf shoe. I thought it was odd, but I let it go, fully expecting the toenail to grow back. It did not (*gross part coming*). Instead, pieces began to fall off and not return for several months. By Christmas 2013, I had half a toe nail but no signs of new growth. (*Gross part over*).
My primary physician thought it was a fungal infection. I had athletes foot in high school, so this wasn’t odd. But the doctor admitted he didn’t know enough and sent me to a podiatrist – Dr. D. Dr. D is a smart dude. He looked at my toe and thought it was odd, but had a few ideas. He did note a small, lengthy, dark lesion at the tip of the nail bed – where the white part of the nail that grows out usually covers. I never noticed it and would have never seen it but for the nail breaking. First, he admitted there was a small chance it was melanoma (heh, spoiler alert). He explained that these types of lesions are rare, but he had seen one before, so he didn’t want to chance it. He took a biopsy and gave me some basic meds to try to fix what appeared to be some sort of infection. In his words, most podiatrists see these potential melanomas maybe once in a career and he had already seen his, so he did not expect much.
When I next saw Dr. D, he advised that the biopsy was negative for melanoma. Phew – I wasn’t planning on it, but I’m glad to have dodged that bullet! So, we set about a course of ways to solve this issue. They never worked and finally, he advised that he just didn’t like the lesion and wanted to take it out. So we set surgery for May of 2014 – it was incredibly minor. The surgery went off without a hitch and so I anxiously awaited his call, to see how my toe nail would grow back.
June 3, 2014, I requested that Dr. D take me in another office because the bandages on my foot were beginning to smell (because it’s summer and it’s a foot). So I went in at about 10am. Dr. D announces that he was glad to see me because he had some news. It turns out that that lesion was melanoma. I was silent. Dr. D. explained that he knows a surgeon at Penn in Philadelphia who handles these types of things and that he would help me get an appointment ASAP. Dr D was now beyond his own expertise, but advised me that I would be in good hands. He wished me “great luck.” It took several months to understand why he said “great.”
And off I went to the world of cancer.
My fiance, Bethany, does a great job explaining the elites of my cancer treatment. http://bethanyjustin.blogspot.com/2015/02/medical-people.html She began keeping her own blog around the time I was diagnosed as stage 4. I had surgery to remove about half of my big toe and check the lymph nodes – both positive for more melanoma. Then I had a wide rescission of my left thigh nodes – some cancer, but not a lot. Greta’s story from last week sounds incredibly familiar – I cannot feel the top of my left thigh now and it’s super annoying.
Last October, after a regular scan, another node near my kidney was found to be hot – another surgery. I also developed lymphedema which is one of those annoying cancer problems. It can also be a non-cancer problem. In either event, it’s a pain in the butt.
Melanoma treatment for stages 1-3 is basically this. You can try Interleuken 2 (IL-2), which is a 15-20 year old drug/treatment. It makes you feel like you have the flu and you do it for about a year. It does not increase survival. Not many physicians recommend it anymore. The drug Kim has talked about before, Yervoy or ipilimumab, is approved for stage 4 and Kim (and Greta’s husband Shane) was in a trial for stage 3. I also entered the trial, but only got in for the other arm, IL-2. I declined to move forward with it. I’d get my Yervoy/Ipi later.
My initial oncologist wasn’t that great. Here’s a tip if you ever get cancer. Be selfish with the people helping you. There is nothing wrong with this. My first oncologist ignored some of my symptoms and seemed to push me through the meat grinder of cancer treatment (it’s an unfortunately apt metaphor). She just didn’t seem to be on my team (she wasn’t on the opposing team either). I had had enough, and pulled the trigger of moving to a new oncologist, still at Penn – Dr. S. One of the surgeon’s was confused by my decision. To me, it was a no-brainer.
Dr. S is a badass. She’s not just a top researcher who’s put forth tons of studies on melanoma, but in my experience with her so far, she’s an actual human being. She gets it. She knows how to be a doctor and how to treat someone – mind, body and soul. Most importantly, she gives us confidence.
Now, when I first saw Dr. S in December, I explained where I was at. I had pain in my chest and shoulder, but no idea why. I had two node surgeries in the last 6 months or so. However, I was generally okay. Dr. S moved my scan up a month as she wanted a “baseline.” I think she knew it already, but I didn’t. Those scan results came December 23, 2014. The Melanoma had grown in my chest bones, a spot on my liver and some in/near the thigh bone/hip. It was stage 4. Bethany and I were crushed.
Dr. S immediately sent me for an MRI of my brain. It came back “unremarkable.” I realize that sounds disappointing, but Dr. S. said it was good.
I couldn’t sleep that night. Bethany and I both woke up the next morning, teary eyes and scared. I cried at the alarm, I cried in the shower, I cried in my cereal. We looked at each other and asked “do you want to get married?” The answer was an obvious yes. That’s the sorta disappointing story of our proposal. We knew we wanted to spend the rest of our lives together, however long that was. We had a happy goal in sight – a wedding date.
Then, I had to go home over Christmas and tell my entire family. Fully realizing that most people do not survive stage 4. Right now, you’re probably thinking how awful that must have been. I thought that same thing that Christmas eve. It was not.
Bethany, my family and my friends, all by my side that day was a gift from God. A time I needed to tell everyone how hurt I was and how scared I was. And I got to tell everyone. It was cathartic, it was healthy, and it was needed. I have never felt so loved and so embraced. Our resolve grew stronger and I realized how lucky I was.
Here’s a cancer tip for you folks who know someone with cancer. Telling people you have cancer sucks. It’s really disappointing news (ha, right). You might think “it’s not like it’s your fault.” That’s true, but it feels so very much like it is. So when you get to tell a whole bunch of people, and they can pepper you with questions all at once, that makes life easier. So, when you dig into someone with cancer, just know it’s painful to relive all of that anguish over and over, so measure your questions. If your co-worker has cancer and you can marshal everyone at once (this depends on the person, but I would have appreciated this) to discuss it, that is extremely helpful. You can bang these things out instead of having to relive you cancer person-by-person.
On the other hand, unfortunately, sometimes I want to just unload my cancer stuff on someone. Most people I know are happy to do this for me. But it’s hard to discern the right time. An unfortunate side effect. I’m blessed to have such great friends who respect times when I’m just having a “cancer day.” A day when its all on my mind and I just can’t handle it.
But I remember that night, Christmas night. It was maybe 4am (ok, Boxing Day morning). I was actually beginning to sleep and I woke up to Bethany crying. All and out balling. I can honestly say that was by far the worst experience of my cancer. No pain from surgery, no pain from metastasis, no fear of dying. But seeing Bethany like that, to this very day, still crushes me.
But after Christmas, we were renewed and reborn. I began Ipilimumab treatment. The funny thing about immunotherapy is that it can be incredibly wide ranging–it was a walk in the park for me and relieved all my pain. Dr. S, noting no clinical tumor growth (but some actual growth), was very enthused – she definitely thought it helped, but we pressed forward into Keytruda. I know I can spare most of you folks the details because Kim’s done all this stuff before and so if you’ve kept up, you know all the details.
Right now, I’m still stage 4. I have known tumors in/around my chestplate/ribs, a small spot on my liver and one in/near my thigh/hip. Ipi seemed to eliminate most if not all of my pain. Keytruda may have brought some back, but everything has been very mild. This may be signs of the effectiveness of the drug. I will find out more in July.
So, I have stage 4 melanoma and that is bad.
I also have a wonderful fiance who is my heart and my soul and who I push through all of this because she deserves it.
I’m surrounded by a wonderful, albeit utterly confusing family, who has held my back every step of the way. My dad makes his way to Philadelphia almost every time (even though I live 20 minutes from the hospital myself), just so I won’t feel alone when I get treatment. And my whole family is so excited for the wedding.
I’ve been backed my an amazing group of friends, from high school, college, law school and my career(s) who have celebrated the good times, consoled me in the bad times and taken my mind off everything in the worrisome times.
I’m blessed by wonderful doctors, surgeons and nurses. I currently maintain phenomenal insurance. My current job respect, understands and supports my treatment. I actually really enjoy my job and career. I’ve stopped sweating the small stuff. I’m not in debilitating pain. I try to live each day fully. I’m granted breath each day and I maintain hope.