2 years ago I found an oozing spot on Mike’s torso. Never in our wildest dreams did we imagine that this freckle could equal a stage 3 cancer diagnosis and that our lives would be affected by melanoma: An aggressive cancer that doesn’t have a cure; A cancer that is the number one, fastest growing cancer among young people (25-29); A cancer that can lay dormant for years and suddenly come back with a vengeance.
In those two years we have both changed. We have gotten “somewhat” used to the emotional roller coaster of scans every 6 months. Mike has changed his lifestyle and he is healthier than ever. I have become obsessed with melanoma research. Some think I shouldn’t focus on it so much, and I agree and disagree. It is my way of feeling in control of the uncontrollable. I have to feel prepared so we know what to do if Mike has a recurrence. I choose to read the good stories – and the bad – because that is reality.
In those past 2 years we have seen people lose their battles and we have met some amazing melanoma warriors. A few weeks ago we had dinner with these lovely ladies (the lady on the right end is Mike – haha).
With the exception of Mike, they are all Stage 4 melanoma survivors and patients of Dr David Minor at California Pacific Medical Center in San Francisco. All of them had remarkable results with bio-chemotherapy treatments – a mixture of chemo and immunotherapies and one of the hardest treatments out there as it requires hospitalization. Hanging out with Tina, Suzanne, and Christina was so important to us and we are truly blessed to know them. The next day after our dinner, Christina had her scans to see if Yervoy was working (she had one tumor left after bio-chemo) and she got the wonderful news that she is officially in remission.
Anyone with cancer knows that scans are a form of necessary torture. Mike is due for his scans in August. 2 years later, we still have scanxiety but we also have hope. There are so many survivors.. and Mike is one of them.
We are approaching one year since Mike’s mole was removed at the dermatologist. So far there has been no evidence that the melanoma has spread to the rest of his body. Scans are done every 6 months to check for tumors. A PET scan was done last Friday and we are currently waiting for the news on Tuesday. The docs have warned us that with his stage the highest chance of developing new tumors comes after 12 months. So the longer we get out from his initial diagnosis, the scarier these scans get.
It is pure torture waiting for this news. The results of these scans could force us back into the parallel universe of cancer. This is a place where you are forced to give up the normalcy of your every day life and face the reality of life or death. We haven’t been back to that universe for almost year a now and we like it that way. Our friend who also has stage 3 melanoma just had her scans and they found lung mets…this in an incredibly fit young mother of two who has no symptoms. Now she must give up her normal life and swap it with one full of doctors visits, research, and the hardest part of all with stage 4 melanoma…deciding on a treatment. We are following every thing she does very closely as this could very well be our reality down the road. Hopefully it won’t – but you just never know with this disease. That’s what makes it so scary. That’s why they call it ‘the beast’.
Mike and I were watching Showtime last night and saw a trailer for a new series. The show is called “The C Word” and it premieres on Aug 16. It stars Laura Linney as a divorced young mother who is diagnosed with melanoma. It is a dark comedy (which is kind of like our life right now). Of course, we can’t wait to see what happens to her as she enters the parallel universe of cancer (well at least how it is depicted on TV).
When I turned 21, I got a tattoo. See it in the picture – it’s a sun. You see, I have always loved the sun and all things associated with it – the warmth, the tan, the beach, the pool, the vacation, etc. I was always tan – been in sunbeds countless times, and never knew anything about melanoma. So I got a sun tattoo and now I find it ironic that the thing I loved so much is now partly responsible for causing me so much pain. And it is stamped on my ankle to remind me of how naive and young I was. Even the week before Mike was diagnosed I sat with my two friends at the pool with no sunscreen – and actually said “I don’t understand how skin cancer can kill you.”
May is melanoma awareness month. So I preach to everyone to get their skin checked. I actually switched primary doctors so I could get a referral to a dermatologist. My previous doctor had made me feel like a hypochondriac when I asked her to check some moles after telling her my husband had just been diagnosed with melanoma. She looked at the moles and brushed me off. So I switched doctors and I am now under the care of Mike’s doctor who immediately gave me a referral to the dermatologist for a mole map. So this week I went to the same doctor that diagnosed Mike. It was weird sitting in the same place where he got the news – but back then, ignorance was bliss and we were clueless as to what melanoma meant. Now that I was so hyper aware of my moles and skin and the consequences – I waited nervously for the doctor. When she came in, I told her my sins and we discussed my situation. She asked me to make the decision about two moles that she wasn’t that worried about, but knew leaving them there would just stress me out. One on my chest, one on my thigh. One tiny little black mole and one small brown/tan mole. They only exhibited two of things to watch for in the ABCDEs of melanoma. But I told her to take them off. Good bye, good riddance. Biopsy results in a week. As she whipped out her knife, she told me how she had diagnosed some very young people with melanoma. In their 20s. At the same age I was when I got my sun tattoo, these young people were being diagnosed with cancer. It really makes me wonder what is causing this disease to strike young people and older people more often than before – is it the sun/ozone, sunbeds, or something else we just aren’t aware of yet?
Anyway, I hope you all will get your skin checked. The biopsy doesnt hurt, I promise. Get the melanoma off early and its highly curable. Let it sit and you are playing Russian Roulette.
My sister in law works for Stanford’s melanoma dermatology department and they are offering free skin checks on May 22 from 9am to noon. Mike and I will be there to help – hope you can join us:
Mike will be honored as a melanoma warrior at “Champions for a Cure” – a fundraising event in San Francisco on May 20. This event benefits the Melanoma Research Foundation and the festivities include wine tasting, food from local restaurants, and fabulous music! The cost is $150 a person. We know it is expensive, but… if you can join us, we would be so grateful and excited to have our friends and family with us. It is for a good cause – MRF funds research programs and helps patients.
Thursday, May 20, 2010 – 7 pm to 10 pm
The Presidio of San Francisco Officers’ Club
50 Moraga Avenue, San Francisco, CA
The evening’s festivities include wine tasting from nearby wineries, samplings from local restaurants, a silent and live auction, and fabulous music!
Dr. Jeffrey Binstock, UCSF Medical School, Clinical Professor of Dermatology
Dr. Hayes Gladstone, Stanford University, Director and Associate Professor, Division of Dermatologic Surgery
Dr. Seth Matarasso, UCSF Medical School, Clinical Professor of Dermatology
Dr. David Minor, California Pacific Medical Center San Francisco
Mistress of Ceremonies Carolyn Johnson, ABC News Anchor
Special Guests: Bay Area Sports Champions
Advance ticket: $150
For more information and sponsorship opportunities, or to purchase tickets, contact Mary Mendoza at 800.673.1290 or firstname.lastname@example.org.
We have a new addition to our family. It is called Kombucha. We will try anything that claims to help fight cancer after a diagnosis of melanoma. It is a drink that originated centuries ago and is made by fermenting sugared black or green tea in a jar for a couple of weeks. But it doesn’t work unless you have a SCOBY which stands for symbiotic culture of bacteria and yeast (also known as a mother). That is the large flesh looking thing. We got our scoby from my mom’s friend but you can order them online or get them on craigslist. We named ours Loogie. Each time we make a new batch, Loogie makes a new “baby”. Then we put the baby in the next batch. We are on our third batch and it gets better each time. It makes a natural carbonation. Kombucha tastes like a vinegar, apple cider and champagne combo. It has billions of probiotics and is high in antioxidants. Yes I know it sounds and looks gross. But it really isn’t. It is really good for you. Try a bottle the next time you are at Whole Foods. At $3 a bottle we are saving money by making our own. Here is a good recipe and we are happy to give you a Loogie baby to start your own batch. http://www.instructables.com/id/Making-Kombucha/
NY Times article on Kombucha (we should have been interviewed for this!) http://www.nytimes.com/2010/03/25/fashion/25Tea.html
Katie was a beautiful young mother of the three in the UK who died in late February of Melanoma. When I saw the story below, I tracked down her blog “Katies Fight” and it was truly devastating, sad, beautiful, and inspiring to read. She documents the short two years of her battle with unbelievable grace and wit. It was very scary to read how she went from Stage III in July 2008 to Stage IV in October 2009, and so quickly to her death last month. For me, her story was somewhat comforting because she accepted death so bravely and I really admire that.
I hesitate when posting these stories. It is the outcome we fear the most and it is very hard to read something that doesn’t have a happy ending – especially for those battling Melanoma. I am sorry for that. But I do it to show people that this cancer can affect anyone. I do it to make people understand. And I do it because we can all learn from her journey – it is one we all will face in some way or another.
Article was from the BBC:
Doctors never discovered the mole that led to 37-year-old Katie Pratt’s skin cancer.
The first the mother-of-three knew about it was when she had developed malignant lumps in her neck.
Friends and family were inspired by her courageous fight with the disease, which she chronicled in a regular blog.
But two years later Katie was dead…read the rest
Katie’s Blog – “Katies Fight”
The New York Times is publishing a series on cancer research and a miracle drug for melanoma. These pics are before and after scans of a melanoma patient only 15 days after taking PLX4032 – a drug that inhibits a BRAF gene mutation and has very little side effects. The drug is in Phase III clinical trials and there are so many people who want to get into the studies that they have had to close the door to people who really need it. Some people on the trial have relapsed and died while others remain free of tumors. But on average it has extended the life expectency of the Stage IV Melanoma patient by 6 months. I am hoping that they open the door for compassionate use after these stories are published. Mike is being tested for the BRAF mutation – present in 50% of melanoma patients – just in case.
New York Times: Part 1 of 3: A Roller Coaster Chase for a Cure
New York Times: Part 2 of 3: After Long Fight, Drug Gives Sudden Reprieve
New York Times: Part 3 of 3: A Drug Trial Cycle: Recovery, Relapse, Reinvention
One thing we have gotten pretty good at due to Melanoma – waiting. Anyone with cancer will tell you – the waiting is one of the worst parts. Waiting for news on biopsies, scan results, doc appts, etc. It sucks, but you learn to deal with it. We waited a lot this past week. Last Wed, we waited in the surgical oncologist’s waiting room – it was so crowded that we had to wait outside the door for a while because there was no place to sit inside. While we waited, we saw others waiting. We even saw a very young man (maybe early 20s) with Melanoma waiting with his dad to see our doctor (we tried not to stare, but he had a huge wound on his neck from surgery to remove all of his lymph nodes). Today we waited in Mike’s medical oncologists office. The lady before us had brought 4 members of her family to chat with the doctor so we knew we would be waiting a while. And now we are waiting again – for the second opinion on Mike’s lymph node biopsy from UCSF. We should know on Tues. But if not, its no big deal, we will wait more. We are pros now.
PS – While we were waiting, we read about the latest news in Melanoma and it gave us hope:
Sorry for the shocking title – but it is the cold, hard truth for those with Melanoma. It kills so many people – one person every hour – and doesnt discriminate by age. I read absolutely heart-breaking stories every day. Just this past week – a 28 year old young mother who died 3 months after giving birth to her twins, a 30 year old father with four children …and countless more stories of Melanoma deaths.
But I don’t see these stories in the mainstream media. I hear lots about breast cancer – especially with the new recommendations for mammograms. But not about the skin cancer that is killing young students, mothers, fathers, etc and for which there really is no good treatment in later stages. A cancer that is actually curable if caught early by a skin screening. In Australia, everyone is aware of the dangers of Melanoma because they have an ongoing public service campaign designed to scare adults and teach children about the importance of protecting yourself from the sun. But that is not the case in the United States. I admit – I was one of those naive people who didnt understand this cancer and what it could actually do. Sadly, I am now an expert. And there is no doubt that a skin screening can save your life.
I found this video from a couple of years ago – of the celebrity chef, Giada de Laurentiis – who was co-hosting the Today Show. Giada’s brother, Dino, passed away from skin cancer when he was thirty years old. He waited to go to the doctor after a mole started to itch and bleed. He died two years later.
For more heartbreaking stories, just read the comments at the end of this post: