I will try to sum this up as best as I can. In February of 2008, I was diagnosed w/ Stage 1 melanoma while I was 7 1/2 months pregnant with my second child. I had noticed a mole on my upper leg change over the last couple months, at first thinking it could be the melanin in my skin darkening from pregnancy hormones. But then it turned BLACK and the texture of the mole got rougher. I couldn't ignore it anymore and decided to go get it looked at by a dermatologist. We had just moved to Boise a couple months prior, so I had to find a good doctor fast. Luckily, a friend of mine referred me to a well-known one in town. Little did I know at the time, that the diagnosis would change my life forever.
When I got the call that the pathology reports determined it was melanoma, I knew very little about the disease. I did know, however, that melanoma is the most serious form of skin cancer. And the deadliest. It was definitely a wake-up call for me. We attributed the cause being all the sun exposure I had while growing up (I spent countless hours in in the pool-- in my backyard and as a lifeguard and swim instructor in my teens). I remember thinking back then that getting skin cancer would never happen to me. I wasn't light skinned, I didn't burn easily, and I didn't have any family history of it. Boy did I learn my lesson to never say never!
The melanoma, along with the skin and margins around it were removed a week later. Those results came back as negative. WHEW. We were pretty lucky that we had caught it early, that it was fairly thin, and that all the margins were clear of melanoma. At that point, I was given only a 10% chance of recurrence. 80% of melanomas are treated and cured if caught in the early stages and at the time, I figured that I was one of the "lucky ones" and it wouldn't come back. For the next 2 years, I went on to live my life fairly free of worry of recurrence. Of course, I had more regular check-ups and I was more diligent about checking my skin, but I didn't stress too much about it. Hadn't we caught it early?!
Fast forward to January 2010. It was right after Christmas when I discovered a small, firm, round lump in my groin on that same leg. It literally popped up out of nowhere. It immediately concerned me because I had never found a lump like that on my body before. Plus, I knew there were lymph nodes in that region, and being as my melanoma had been only a few inches away from there, I kind of jumped to conclusions and put two and two together. And I was right. A lymph node biospsy had confirmed that the melanoma had returned and had found a home in at least one of my lymph nodes. I remembered my dermatologist telling me back at my initial diagnosis that it was good that the melanoma was contained to the skin (or so we thought) and that if it had spread to my lymph nodes, then that wasn't good and my survival rate would drop dramatically. To say, at this point that I was scared to death was an understatement.
A few weeks later I had surgery-a lymph node dissection, in which they removed all, or most, of the lymph nodes in that region. Prior to that surgery, I had done my first PET/CT scan (which was a nerve-wracking experience). The results came back as negative for any metastatic disease. This was good news. Then, the surgery results were the same. The cancer was contained to that one lymph node. Both of these results were huge answers to our prayers. But the fact of the matter was that I was now Stage 3, and had a 40% chance of recurrence now. There aren't many options for this stage of melanoma. We had made the difficult decision of opting out of the only FDA approved treatment for this stage which is Interferon based on the fact that it only improved the risk of recurrence by 10%, and not overall survival rate. Plus, the fact that it is a toxic treatment that would make me sick for a year didn't appeal to me (for little to no benefit). We decided to take our chances by participating in a clinical trial.
Since there are no melanoma specialists/oncologists in the Boise area, I sought out a well-known one in S.F. My parents still reside in the Bay Area, so it made sense to go there first. In March of 2010, I started a Phase III clinical trial studying a vaccine treatment. The biggest risk of this option was one, we didn't know how successful it would be, and two, I wasn't guaranteed any treatment (it was a double-blind, randomized study meaning neither the doctor nor I knew for sure if I was getting the drug or the placebo.) All the other clinical trial options that we researched though were a 50-50% shot of getting the drug, and with this one I had a 66% chance.
This decision felt right too. Because the induction phase of the trial required me to get injections every couple of weeks, we decided it would be best if the kids and I temporarily moved out there for the time being. This was in March and the plan was to return home at the end of June. Those 3 months in CA were actually quite stress-free. And I think I was getting the drug (and not the placebo) because I had side effects after each injection. The kids and I really enjoyed our time with my parents, even though we missed Eric a lot. Luckily, those 3 months flew by and pretty soon it was time to pack up and return home to a little normalcy.
Tuesday, June 22nd was a day I will never forget. It was the day before we were supposed to go home. The weekend prior to that, we were in Lake Tahoe for Eric's sister, Erin's wedding. It was a good distraction for me before my routine CT scan on Monday, the 21st. But I really didn't expect any different results other than a clean scan. Boy, were we wrong. Eric and I went in that next day, Tuesday, to meet w/ my doctor and get my last injection for the next 3 months. He came in with bad news. The melanoma had returned...this time in my lungs. Now, we were dealing with a whole new ball game--Stage 4 metastatic melanoma. Evidence of disease. In a vital organ. I already knew the statistics and quite frankly, they are very alarming and depressing. I had 4% chance of survival in 2 years. I tried to ignore this, but it was easier said than done. It was the first time in my life that I felt about death. Everyday. Was this it for me? Was I going to even make it to see my kids grow up? Better yet, my next birthday?
The next 6 weeks proved to be the most stressful weeks of my life. The lack of sleep and anxiety caught up to me too. The only thing that saved me were some anti-anxiety meds and a hynotherapist to deal w/ the stress and help me sleep better. There was a lot of researching (which was very depressing and overwhelming), visits and discussions w/ several top melanoma experts acros the country, more researching, and then lots of prayers, fasting, going to the temple, and pondering. We finally made a decision though. We decided that the best treatment option for this stage in the game for me was biochemotherapy--which is a cocktail of 5 different drugs-3 chemotherapeutic agents and 2 biological or immunotherapeutic agents. It is a very rough and toxic treatment. And it's administered in the ICU because of some of the side effects that can occur. But we felt, based on the doctor's opinions, that this was my best shot at having a good response and most importantly, long-term survival. I was given about a 25% chance of having a "complete response", which is actually quite good considering the alternative options gave me more unknown stats on long-term survival. If I was a complete responder and I stayed no evidence of disease for 3 years, then my survival rate would jump up dramatically. We also felt that I should try the hardest treatment first, while I'm healthiest and presenting no symptoms of disease.
Then the decision was WHERE to do treatment. We toyed around with the idea of going to SLC at the Huntsman Center, but in the end, we felt going back to S.F. where the experts were (and my parents, equally important) was best. I would actually be treated by a different doctor this time though, because my last doctor didn't offer the same treatment at their hospital. This doctor has A LOT of experience though, a good track record, and a long list of Stage 4 survivors (a couple that I actually know). This helped my confidence level tremendously and I just knew that I needed to go here. Plus, I would be in a hospital under excellent care with
well-trained nurses and staff. That gave me peace of mind too.
So, that is where I'm at. I am back to feeling optimistic about the future, I am ready to fight this "bad boy", as I like to call it. Cancer will not win. I will come out on top eventually. Someone once told me that during treatment, you will feel like crap, but the cancer will feel even more like crap. I love that! I know that I have everything I need to conquer this-a strong body, a healthy and positive mind, an amazing family, wonderfully supportive friends, and the help of the Lord along the way. In the end, it will be alright. I am not done yet. I have many more things that I know the Lord wants me to accomplish, with the most important being raising these 2 boys!
Please, please join me in this journey as I share my experiences, my joy, my fears, my emotions, my "wins". I can't do this without you! Your support has meant everything to us, and I hope that people will read this blog as a way to not only get updates from me, but to leave a comment-a thought, a "boost", or even a bit of inspiration for me. It's important! I know that writing on this blog will be therapeutic for me as I go through this trial, and I also hope I can help others along the way!!!
HERE WE GO!!!