We like the saying “Keep Calm and Carry On” – – it’s something they used to tell people to help them deal with the fear of being bombed in Britain during World War II. That is kind of how cancer feels. Like you are waiting for a bomb to drop. I like that saying because it is a reminder that we can’t let fear paralyze our lives. We need to go on. That is why I haven’t posted in a while. We are enjoying life and carrying on!
Ever since Mike’s diagnosis we have met so many truly amazing people who LIVE with melanoma. Our “mole mates” are inspirational. I was bursting with pride when our friend Christina McEvoy was featured in the NY Times. Christina has Stage 4 melanoma (in remission). Between treatments of Yervoy and caring for her young children, she started a group in Idaho for melanoma survivors (Sol Survivors). An amazing woman! Our other friend Sue Lescure had her eye removed due to her ocular melanoma. What torture she has endured – all with such grace and beauty! She is also amazing…and in remission! And I can’t forget my friend Shari. When they found melanoma in her brain and lungs she stayed very positive. This is a woman who, a day after brain surgery, came to see me in Palo Alto and brought ME a gift – a little porcelain bird that says “Be Brave” painted on it. I am happy to report that Shari is also in remission.
Sadly, I can’t forget the people whose lives ended due to melanoma over the past months. We lost a few good men. One was Mike Brockey. I admired the very honest journey he took with melanoma. Another was Andy Wileman. http://thewilemansjourney.blogspot.com/ Andy was a 40 year old police officer and father of young children who bravely fought Stage IV melanoma. He passed away in December. My heart goes out to Mike and Andy’s family. These two men left a mark on me that I won’t forget.
Mike’s sister and I are on the event committee for the Melanoma Research Foundation San Francisco Gala. If you can join us on May 17 – or donate auction items – we would be thrilled. I can’t wait to see all the wonderful people at this event – from the top local docs to the local celebs. But the main reason we love this event is because we get to connect with melanoma survivors. It is therapeutic and it helps us keep calm and carry on.
We got the news last week that Mike is still clear of melanoma (no evidence of disease) from his latest pet scan. We are thrilled to say the least. We spent the entire weekend waiting for results and went to Pier 39, Rainforest Cafe, and the aquarium to keep ourselves occupied. I have to say that Scan time sucks and it has a way of making you feel so lonely. Now that Mike is two years out, his scans will only happen once a year as opposed to every 6 months…a good thing!
As we rejoice, we will not forget our fellow melanoma warriors who are fighting this horrible disease.
May was a crazy month for our household. Many of our family members decided to be born in May, including our two children who are separated by 2 years and one week and my brother and sister in law, in addition to many others that are near and dear to us.
One thing we enjoy doing each year is throwing a big double birthday party for the kids. So we invited 60 of their classmates and had a “treasure hunt” at the lovely Junipero Serra County Park in San Bruno. Other than the violent wind and the end of the world prediction on the same day, it was a great day of fun.
In addition to being Melanoma month, May 4 was the Melanoma Research Foundation’s Wings of Hope gala in San Francisco. I joined the event committee and helped them with a bit of marketing and PR in addition to the fun task of collecting bottles of gin, scotch and rum from my generous friends for the party. The best part: Mike and I had the distinct pleasure of meeting a number of long term Stage IV melanoma survivors…. Erick Davis, Suzanne Lescure, and Kari Worth – all patients of Dr David Minor at Cal Pacific Medical Center. Suzanne and Kari were both recognized for their contributions at the event and it was so uplifting to meet them. Here are some pics of the gala:
May was fun, but I am looking forward to an event-less June!
Earlier this year, we got an email from the David Cornfield Melanoma Fund asking if we knew young people with melanoma for a video they were making (Mike was considered too old at 43.. haha!). David Cornfield was just 32 when he died of melanoma – his wife is featured in the video and has carried on his legacy. Yesterday the producers contacted us with their completed video “Dear 16-year-old me”..but I had already seen it because it has become so popular on YouTube so quickly. I am sharing it with everyone I know because it is so moving and they absolutely nail it….what I have been trying to communicate to people – that young people are not immune to cancer – especially melanoma – and that if you catch it early you could save your life. I hope you will watch it and share it with your friends and family.
Last week Mike got the news that his scans were once again clear, 18 mos after diagnosis. And once again it was PURE TORTURE waiting for the call from the doc – and PURE RELIEF when we got the news. Our life would have changed so drastically if we had gotten bad news. But instead we celebrated in Vegas this past weekend with 3 other couples. We had a blast!
Someone asked me if the clear scans meant Mike had beaten melanoma. I would love to say yes…but we really don’t know the answer to that because melanoma is different than most cancers. Many people with other cancers can say they are “cured” 5 years out. But Melanoma often comes back unexpectedly – 5-20 years later. I don’t think we will ever live without the fear that it will return – unless they find a drug for this horrible disease.
So for now, we will just continue to live our lives as normal as possible and enjoy every moment. Life is a roller coaster ride – some parts are scary and some parts are fun…
So another 6 months have passed and that means it’s PET scan time for Mike. We are 18 mos out from a Stage IIIa melanoma diagnosis. It seems our life is now broken into 6 month increments. Waiting for the scan results is scary. We know of multiple people who have gotten bad news from scans even though they felt completely normal. That is how melanoma rolls. But the the good news is that when Mike hits 2 years, he will only have PET scans once a year.
I have to say that we have enjoyed the past 6 months of normal life. Life certainly isn’t the same as it was before a cancer diagnosis, but now we realize that it will never be. And that is just fine with us. So as we wait for scan results over the weekend, we will appreciate the past 6 months of health and normalcy. The fact that we can pay our bills, go to work, school, dinner, etc. is something we try to appreciate (well, most of the time). There are so many others suffering from illness and they just can’t do the mundane tasks we all take for granted. So please take a moment to appreciate your life, your health, your everyday mundane stuff because you are truly blessed to have these things.
Our first ever Cocktails for a Cure was so great! Thanks to everyone who came. We raised over $3000 for for the Melanoma Research Foundation and we are on our way to $10,000 by the end of 2011.
My favorite part of the night was honoring Darren Farwell , my high school friend who lost his battle at age 32 to melanoma. Darren’s friend Devin helped me we give away some protective sunware items from UVSkinz.com – a company that Darren’s wife started after he died.
My other favorite part was when my 9 year old daughter stood in front of 50 people and told them to “check their buttocks” for melanoma. It was hysterical, but so true! And we ended up winning one of the raffle prizes – one week at a Florida condo – it wasnt rigged, I swear!
All in all, it was so nice to see everyone and I hope more people will come to my next one – especially others with melanoma who live around the area. Margaritas for Melanoma is just the beginnning for us. Our next event will be in the Spring so stay tuned!
Emily and Mike
Mike’s Firstgiving Page: http://www.firstgiving.com/mikemcauliffe
My blog has been bugging me. Sometimes I feel its too negative. I want to share stories of melanoma…..but I don’t want to scare. Well, I kind of do. Sadly I don’t see any other way to drive the point home. The majority of people I meet just don’t understand how serious this type of skin cancer is (I was one of these people one year ago). Even some people with melanoma don’t understand the seriousness. But for all of the horrible stories about melanoma, there are as many good ones. So in an attempt to get the right balance, I have updated the blog and separated the pages into two sections – the stories of devastation and the stories of survival... which include those who are surviving with Stage 3/4 melanoma.
For me, it’s really great to chat with those who understand… my “melanoma friends”. Our friend Christina recently moved to Stage IV, which was devastating, but she is such resourceful person and went into major research mode. After talking with the top docs and other survivors, she picked a very tough therapy (biochemo) and stood by it even though some people said not to do it. This week she sent me a note from the hospital (where you stay for 5 days in intensive care while they administer the drugs): her tumors are shrinking after just one round! I am so happy for her.
Last night we watched the newest episode of the Big C and I cried and laughed through the entire thing. Its so great to have a show we can relate to.
And this week it was so cool to Sykpe with Andrea – aka “Melanoma Girl“. She is a stage IIIa survivor just like Mike and she is starting a non profit organization. She had just gotten her scan results and they were all clear. So happy for her also! We are trying to organize a charity event and she has some great ideas… so stayed tuned. How cute are her t-shirts? I am going to get one for myself:
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).
Some disturbing figures in this video. Melanoma is on the rise in children and over all the incidence has gone up 44%! That is so scary. What is it? The ozone? Something we are eating? Something we are putting on our skin? See this article on sunscreen. Or is it some kind of deficiency? I think the best thing to do is to be very aware of any changes on your skin and your childrens’ skin.
Last night we attended “Champions for a Cure” – a charity melanoma event in San Francisco benefiting the Melanoma Research Foundation. The best part was meeting others with melanoma. We didn’t know what to expect. So we were stuck by how young (and great looking) everyone was! It was nice to meet Erin, who helped organize the event – so funny to compare scars! We laughed that the people with melanoma should wear some kind of badge so we could find each other. I wanted to go around the room and ask – do you have melanoma? You would never have known by looking. Everyone looked so great.
It was a bittersweet evening. Watching a 26-year-old with Stage 3 melanoma cry during most of her speech was heartbreaking. And another young lady (stage 4) also in her 20s – found out she has a new tumor 2 days ago after being on an experimental gene inhibitor trial that seemed to be working for her. It is so frustrating and sad.
They spoke of the new drugs that are just on the horizon for melanoma and everyone agreed that we are finally at a turning point. There have been no new drugs for melanoma approved for over a decade. We will soon hear about some new drugs with the ASCO June conference approaching.
The evening raised a ton of money with a great live and silent auction. They auctioned off a lunch date with Lisa and Brittny Gastineau – from the reality TV show about the New York socialites. Lisa is a recent melanoma survivor.
It is a very exciting time for melanoma research. So I encourage all of you to donate to the Melanoma Research Foundation. Not only do they help support the patients mentally with online forums, they fund the research to battle melanoma.
We like the black wristbands that we got. They say ‘fight the beast’…so fitting for melanoma.
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:
Two Melanoma Warriors became Angels this past week. Both young fathers, their battles were brave and heartfelt. As they fought, their wives tried everything they could to help them. Whether it was prayer, challenging pharmaceutical companies, keeping their husband’s pain at bay, driving long distances to the hospital, blogging to keep everyone up to date, taking care of their devastated children – they did it for love. These amazing women are also Melanoma Warriors and they will remain so – now with their loving husbands as guardian angels looking after them from above.
Rest in Peace.
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.
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”
These are the blogs of my two favorite Mindys…
They are in the midst of a battle with Stage IV Melanoma. One as a patient, one as a wife. If you know me, you know that I am not religious. They make me pray. Please send them your prayers.
Featured in the NY Times article on MD Anderson Cancer Center.
Keep fighting. Love to both of you…
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
Mike got his 6 mos PET scan results last Friday. He is all clear – NED (no evidence of disease) is what they call it. So we celebrated and words can’t explain the relief and joy.
My melanoma friends will agree – scan time is very traumatic. Mike had to practically push me up the stairs of the doctor’s office on Friday. Knowing that this appointment could change our lives so radically is part of what bothered me – I didn’t want to face that again. Would the upcoming months be filled with chemo and illness versus proceeding with life “as usual”? During the drive over, I lectured Mike on what we would do if we got bad news….we could fly here for this trial or there for another. People make fun of me for being so negative in this situation. I am not being negative – I am trying to feel in control of something that I can’t control. Being prepared for what happens next – good or bad – makes me feel better. So until July, when Mike has his next scans, we will work on enjoying our “normal life”, appreciating things that used to seem mundane, and I will try to stop worrying so much… but I won’t stop trying to be prepared.
Well it’s kinda fun – for me more than Mike.
Today Mike got his usual check up – they feel his lymph nodes, check weight, BP, etc. All good! His BP is down, but we cant figure out why he has lost only 4 lbs after starting his workout regime that consists of getting up at 5am and going to the gym 4 days a week and running 5 miles the other days. He eats way too many pistachios. That is my theory.
So why is it fun for me? I get to talk to the people who know all the latest and greatest on Melanoma. I rattle out all my favorite Melanoma terms – Breslow, anti-CTLA, Ipilimumab, Leukine, BRAF and they understand me! In fact, I so impressed them with my knowledge, that I was invited to be on the UCSF melanoma tumor board (this was a joke of course). Anyway, during the 1.5 hours a day I spend on the train – I usually read Melanoma research on my iPhone. Today’s visit confirmed that it was worth it.
At UCSF today we reviewed Mike’s options, they gave us the prognosis numbers, and discussed his possible next steps. We already know there arent many effective drugs or options for anyone with Melanoma. Interferon is a immunotherapy (it is not chemo) and it is the only drug the FDA has approved for Stage 3. You take a high dose for one month (5 days a week via IV) and then self inject at a lower dose for 11 months – or for however long your body can take it. It is highly toxic with bad side effects including depression, nausea, fever, fatigue, etc. Most people cant work during the first month. Interferon’s track record is not so good – stats show that it doesnt improve overall survival – it just prevents recurrence for some (5-10%). But it is all that is out there – unless you can find a trial that accepts you. The other option is to do nothing – but most people have a tough time doing nothing when they have cancer. It was nice to hear from UCSF today that both options are perfectly acceptable. So we need to make that decision.
That decision is the part that is not so fun.
These are the stages of grief. We have been through most of them over the past couple of months:
- Denial (this isn’t happening to me!)
- Anger (why is this happening to me?)
- Bargaining (I promise I’ll be a better person if…)
- Depression (I don’t care anymore)
- Acceptance (I’m ready for whatever comes)
We are now in the Acceptance stage and now we are getting ready for the next one: it is called the Fight The Beast Like Hell Stage.
Two weeks ago we got word from UCSF regarding Mike’s lymph node biopsy (second opinion). They concur with the original diagnosis of isolated tumor cells – but they can’t give us the number of cells other than saying there are “rare single melanocytes” present “but cannot completely classify them”. What this means is they think there are cells but they arent positive they are cancerous but they will say they are to cover themselves.
This means Mike is stage IIIa. With Melanoma, if you have any cancer in your lymph nodes – no matter how small – you move into the Stage III category. He will always be Stage III (or he could move to Stage IV – but lets not think about that) because you can’t go backwards with the stages of cancer. When you have cancer, suddenly the rest of your life is measured in 5 year increments (this is known as overall survival – OS). Some state the overall survival for Stage IIIa Melanoma between 63 to 69% for 5 years. Other calculations (http://www.melanomaprognosis.org/) range between 84.5% – 90.3%. We like the second one better!
Fight The Beast Like Hell Stage:
They dont call Melanoma “The Beast” for nothing. So I have taken a deep dive into Melanoma research – drugs, clinical trials, you name it. I am a walking database of Melanoma info and I apologize to my friends and family for my obsession. Honestly, I really don’t care what you think. I need to know everything about “the beast” – so we can kick the shit out of it. Mike says I saved his life by noticing his mole in July. I say: you haven’t seen nothing yet.
We are STILL waiting to hear from UCSF on a second opinion of Mike’s lymph node biopsy. It has taken over a month. The typical biopsy takes a week. We arent really sure why it is taking so long – but we know that the pathologists are having a hard time concluding whether or not the cells found in his one lymph node are cancer. This week UCSF ordered the path slides from the original mole biopsy that was done in the dermatologists office – this is after they ordered the lymph nodes (stored in wax) from the seninel node biopsy. They said the final report will be ready end of next week.
My New Zealand friend Vanessa sent me this link to a public service campaign in Australia. They are showing the footage of a wide excision (the surgery Mike had in August) to scare the hell out of people….great concept. http://www.skincancer.gov.au/
We are excited to attend the Melanoma Wine Event December 10 in San Francisco. It benefits the Melanoma International Foundation which has helped us greatly during the past couple of months.
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: