A blog about us…and journey with Melanoma

Posts tagged “Melanoma

2 years ago….

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).

Survivors

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.

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The Parallel Universe of Cancer

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).


Isn’t it Ironic?

Emily's Leg

Mole removal and Sun Tattoo

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:

http://outpatient.stanfordhospital.org/clinics/dermatology.html?WT.mc_ID=dermatology


Champions for a Cure – Melanoma Event in San Francisco

Champions for a Cure - May 20

Champions for a Cure Invite - May 20

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.

http://www.melanoma.org/get-involved/champions-cure

See the PDF of the invite

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!

Honoring Champions:

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 mmendoza@melanoma.org.


Our Cute Kombucha Babies

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

Mike and our newest Loogie Baby


A mother’s inspirational skin cancer battle

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”


NY Times covers the heartbreak that is Melanoma..and a miracle drug

BRAF Drug Scans

riddled with melanoma

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

http://www.nytimes.com/2010/02/22/health/research/22trial.html

New York Times: Part 2 of 3: After Long Fight, Drug Gives Sudden Reprieve

http://www.nytimes.com/2010/02/23/health/research/23trial.html?pagewanted=1&hp

VIDEO: http://video.nytimes.com/video/2010/02/22/health/research/1247467133833/last-chances-first-responses.html

New York Times: Part 3 of 3: A Drug Trial Cycle: Recovery, Relapse, Reinvention

http://www.nytimes.com/2010/02/24/health/research/24trial.html

VIDEO: http://video.nytimes.com/video/2010/02/23/health/research/1247467149391/uncharted-waters-fragile-hopes.html