Just updating the blog – Mike passed his yearly scan with flying colors! It has been over 3 years now since his diagnosis. He is all clear and we pray that his luck will continue. YAY!! His doctor told him that is survival stats are very good after the 2 year mark but in the same breath told him he must be vigilant. Our doc told Mike that he recently had a patient that was all clear for 16 years and just had a recurrence near his primary. Melanoma is a sneaky bastard. We will try and enjoy each moment and not let that fear control us. Take care everyone.
Just letting you know we are doing well, but Mike hasn’t had his scans yet – we are procrastinating. He celebrated his 3 years of NED back in August. His diagnosis finally seems like it was ages ago and we have days where we forget about cancer. It is so nice. Mike has is referral for a PET/CT, but we have stalled due to the scanxiety..it is such a horrible thing.
In August, I lost a lovely friend, Shari Van Heusen, to melanoma. She had battled it for a long time. This is a woman who came to visit me in Palo Alto a day or two after she had brain surgery at Stanford…and she brought ME a gift that day! It is a little ceramic bird that has “be brave” written on the side. I look at that bird every day and think of her. It reminds me that we all need to be brave, no matter what we face. Fear is the enemy. And fear is why we procrastinate. So this is a reminder to my husband and to myself: We need to face our fears and be brave.
We will keep you posted!
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.
One of things a young lady with melanoma says in the “Dear 16-Year old Me” video is that your skin is like an elephant – it remembers the damage you do to it. She is so right, but young people still don’t seem to get it. I don’t blame them, for most of my life, I didn’t get it either.
As I scroll through Twitter and search the word “melanoma”, I see the latest news in the world of the most deadly skin cancer and I also read things that make my stomach turn. Young girls Tweet stuff like this all the time: “The last thing I want to do right now is write a paper on Malignant Melanoma… REALLY?! #Ilovetotan” and “It’s people getting ugly season..I refuse to participate #GTL” or “Think 9 mins on the beds today was a little to much but it will be worth it !! #tantastic” Note the hash tags: #Ilovetotan, #tantastic, #GTL (GTL = Gym, tan, laundry.. which comes from the stupid people on Jersey Shore). Men are just as guilty. Today I saw a self proclaimed “Tanorexic” from England announce that he has melanoma on Twitter. He even went to the dermatologist appointment “lobster red”. Do they not know that Melanoma is the most common cancer found in people aged 25 to 29 and the second-most-common cancer in people aged 15 to 29 years old?
No wonder the rates for melanoma are going up in this segment of the population. It is all about vanity. They want to look good now and aren’t concerned with the future. What they don’t understand: If you damage your skin now, you will pay for it down the road. Not just with wrinkles, but with a deadly, devastating disease. It might not happen right away, but it could be 5 years, or perhaps 10 or 20 years down the road. The reality is we just don’t know – so why risk it?
Last month California passed the first ever ban on sunbed use for those under 18. It is a huge victory and I was one of the people who sent our governor a letter in support of passing this new law. It makes sense to me. You wouldn’t give your kid a pack of cigarettes, so why would you let them go to a sunbed? In the past we didn’t look at the sun as a carcinogen, but now if you go into a tanning bed or purposely burn your skin, you must understand the consequences. It will affect your cells. It will mutate your genes. If you are unlucky enough to have a cancer gene in your genetic makeup, perhaps passed down from your ancestors, then you are at an even higher risk. Maybe it would only take 2 bad sunburns to mutate your genetic code to the point that melanoma grows uncontrolled. You just don’t know what lies inside you, so why not try and prevent those mutations and stay out of the sunbeds?
If you say to yourself “It wont happen to me, I don’t have fair skin, I am too young for cancer”. You are wrong. It can happen to anyone, at any age. Some examples are below.
- Diagnosed at 24 years old, Stage 3 survivor – http://adventurewithmelanoma.blogspot.com/2011/10/now.html
- Diagnosed at 22 years old, Stage 4 survivor - http://meredithlegg.blogspot.com/ – she is in the Dear 16 Year Old Me Video
- Diagnosed at 24 years old – deceased – http://rehabelburi.blogspot.com/ – Rehab El Buri, a young muslim woman, was diagnosed at age 24 with Stage 4 melanoma. What haunts me is that she never got the results from a mole on her neck that a doctor removed because it looked suspicious, 3 years prior. She died in March 2011. Her blog ends in 2009, but it is a haunting yet beautiful account (she was a journalist) of how she faced death at such a young age. Her obituary: http://abcnews.go.com/Blotter/remembering-rehab-el-buri-abc-news-investigative-team/story?id=13076627
PLEASE REMEMBER: YOUR SKIN REMEMBERS
Just this month I saw a report that was released saying the degree of frailty, more so than age, can predict how well patients will fare after a melanoma diagnosis. Specifically, patients with decreased core muscle density were more likely to see their cancer spread to distant parts of the body. I thought this was interesting and I do believe strongly that exercise helps the immune system. I have also seen some very fit people get melanoma and progress, but my point is that the healthier you are, the better you feel and that is important whether you have cancer or not. Mike’s mother is a two-time cancer survivor with Multiple Sclerosis. She is in a wheel chair, but she always manages to go swimming to get her exercise. Whenever I don’t feel like exercising, I think of her.. and I feel like a big wimp.
Before Mike was diagnosed with melanoma, he was not exercising very much at all. Now it has become part of his routine and he loves it. Recently he developed tennis elbow and had to skip lifting weights for a couple of weeks only to have his lower back go out on him right after. So for over a month he hasn’t been exercising as much as he used to and he really misses it. I can tell the difference not only with his muscle tone – when he doesn’t exercise he is grumpy, doesn’t sleep well, etc. Over the past couple of months, I have started doing strength training and yoga. I have also started a new fitness routine at a gym next to my work. It focuses on short bursts of really hard exercise like high reps of burpees and push ups…but it only takes 15-25 minutes. It is called Soul Blast – at the 3rd Door in Palo Alto). It doesn’t sound like much time to get a workout, but it works all of your muscles and I am so sore afterwards. I really love it and I can see a difference in muscle tone already. So even if you are short on time, you really can still reap the benefits of exercise without spending hours doing it.
I have wanted to write about the importance of exercise for cancer patients for a while. What prompted me to do so was David Haas. He is my first ever guest blogger. David is a cancer patient advocate who had a friend go through cancer and saw the toll it took on his short life. He has a passion for fitness and began researching and writing about the effects of fitness and health to help benefit cancer patients. I hope you will read his words below:
Physical Fitness For Cancer Survivors by David Haas
Modern cancer treatment is a proven method for fighting many types of cancer. Surgery, radiation, chemotherapy, immunotherapy, laser treatments, stem cell transplants, and various targeted therapies can successfully fight some cancers.
Battling cancer and surviving treatment are major accomplishments for cancer patients. But for most survivors, the last treatment does not signal the end of their battle. Rather, it merely shifts the focus — from fighting their cancer to fighting its return.
Most people who make it through the rough journey of cancer symptoms, diagnosis, and treatment think about ways they can get and stay healthy. While activity levels generally decline during the cancer experience, after cancer most people look for ways to increase their energy and fitness level.
Exercise has many benefits for cancer patients and survivors. Research shows that exercise and healthy eating can prevent some types of cancer. It indicates that exercise can keep cancer from returning. It also suggests longer survival rates for those facing a cancer diagnosis.
According to a report from Dr. Matthew Hoffman for WebMD, women who exercise after breast cancer treatment live longer and have less risk of recurrence than women who do not exercise. Two clinical trials revealed the same results for colorectal cancer survivors.
If exercise is beneficial for people with these types of cancer, it is likely to help any cancer patient — from the women with breast cancer to someone with a rare and deadly disease like mesothelioma. People undergoing mesothelioma treatment cannot exercise at the same level as other cancer patients, but even gentle stretching is beneficial.
Physical activity has the same benefits for cancer patients and survivors as it does for other adults. Exercise makes people fitter, stronger, and thinner — all goals for healthy living. Studies show that exercise can reduce pain and fatigue, increase energy, boost self-confidence, and improve mood, outlook, and increase life expectancy. It can also lower the risks for heart disease, diabetes, and other chronic illnesses.
Fitness levels vary for each cancer survivor, and they should discuss exercise with their doctor before starting a workout program. Once they get the go-ahead from their doctor, cancer patients should incorporate three types of exercise on their road to recovery and fitness.
Stretching and flexibility exercises are something anyone can do, and they help cancer survivors maintain mobility. Resistance training, such as isometric exercise and weight lifting, builds muscle. And aerobic exercise, like walking and swimming, burns calories and builds heart fitness. All three types of exercise are essential to the health and well being of cancer survivors.
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.
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.
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.