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May 13, 2014 at 11:06 pm #21965goldfidlerParticipant
I have been a regular on these forums since my diagnosis in June 2013. I took some time last night to update my friends and family on my situation. However, it occurred to me today that I did not update my other family, the people on this forum. I am very confident that, without you support and advice, I would not have made it this far without going completely insane. Thank you to everyone for being here, to help people like me, so we can all get through this situation just a little more easily.
Here is an abbreviated version of the update I sent last night. Please keep in mind that some of these points are dumbed down for a general audience who is not very familiar with cancer or melanoma.
And to my friends here on MIF, I hope this update finds you happy and fighting. That is all we can do. Fight. Learn. And enjoy every day we have. I cannot thank all of you enough.
Hi Friends and Family,
If you are receiving this email, then I consider you to be my friend and I have your email address in my Google Mail address book. Although I may not talk to you every day or even every week, I do consider you a good friend of mine. I cannot say the same for everyone I know. If this situation has taught me anything, it is to appreciate every day you have and don’t waste time on people who bring you down with negative energy. Life is too short and I would appreciate your discretion with this information.
Although it has been 8 months since my first surgery, it seems like 10 years ago. It is amazing how time seems to fly by sometimes but it can also enter this warped feeling of slow motion. It seems like yesterday that Lisa and I were living in France and seems like it was years ago that some doctor said the word cancer to me. I was diagnosed in June 2013, had my first operation in August, had the second operation in September, and am now continuing the fight.
We are now living in FL full-time. I am seeing a new Oncologist at Mount Sinai Cancer Center in Miami. MSCC is supposedly one of the best in the country for melanoma care and research. And my doctor is the best they have and has been specializing in melanoma treatment exclusively for more than 20 years.
As part of my ongoing care, I am supposed to have scans every 3 months for the first year. If clear after one year, then I go to every 6 months. Then annually if you get to that point. Two weeks ago, I had my 3-month scans (one CT on my abdomen, one CT on my groin area, and an MRI on my brain). After almost 2 weeks of waiting, I have been informed that all is clear, which means that nothing new has grown or spread since my last scan. This news is as good as I could have hoped for. Essentially, they have looked at all of my internal organs with million-dollar microscopes and cannot find any signs of cancer anywhere. I am very happy and thankful for your support. As the doctor says, I might be one of those small percentages of people who beat this thing. It happens for about 20% of the Stage III people. If someone is going to beat the odds, why not me? Maybe I am that guy. I have beaten the odds before. Maybe I am lucky enough to have gotten away with only losing part of my foot and a couple pounds of flesh from my thigh.
I have been feeling very good overall. Very healthy. I try to stretch every day to increase the flexibility of my leg, ankle, and foot. I try to exercise in some way every day to increase circulation and blood flow. I am also taking an interesting combo of vitamins and supplements to give my body some extra good stuff to rebuild, repair, and fight off the bad stuff. I still have lymphedema in my right leg, which requires me to wear a compression sleeve (glorified name for thick pantyhose) on my right leg from ankle to upper thigh. If I stand, walk, or exercise for too long, my leg swells up from the accumulation of lymphatic fluid because I no longer have lymph nodes in my right thigh to move the fluid. My upper thigh is almost completely numb, as they had to sever most of nerves during the surgeries. My foot still hurts if I walk on it too much because I no longer have the ball of my right foot. When I try to roll my gait forward when walking normally, I am essentially walking on the front metatarsal foot bones which are only covered by a thin layer of skin. The doctors say it will take time for any fleshy accumulation to gather in my foot. In addition to not every being able to wear flip-flops again, I am not supposed to ever go barefoot, anywhere, for any reason. I never loved going barefoot until I couldn’t. I tell you this… living in FL now, I really miss going barefoot. My scars are healing well. The one on my thigh is barely noticeable but it is tough to hide the fact that your toes and front 1/2 of your foot are missing.
Other popular questions:
– Are you doing any chemotherapy or radiation treatment? I have been asked by many but I am not taking any chemo or radiation. Chemo and radiation are only used for specific types of cancer. In my situation, I was able to take the radical step of partial amputation of my foot and full removal of the lymph nodes in my thigh. If the cancer is in the colon or lungs, this type of approach is not an option and chemo/radiation is a better option. However, from what I have seen so far, chemo and radiation are not so nice. There are many options if you are Stage II (means you detected it early) or Stage IV (means you are basically f%$#ed). However, Stage III is No Man’s Land. Most Stage III people, myself included, have opted for the Watch & Wait method. This does not imply “Do Nothing.” I had the surgeries to cut the poison from my body by any means necessary. And now I increase monitoring and testing to see if anything is changing inside my body.
– Do you wear a prosthetic foot? No. They gave me a “foam insert insole” for my right shoe that I am supposed to wear. However, it was never comfortable for me from Day 1. When I am doing something active, I use a carbon-fiber insole without the foam part in my shoe. Think of it like a $150 Dr Scholl’s insert that is made of carbon fiber and is slightly flexible. It provides a little spring and better support for my foot but is as hard as a rock. Only certain shoes fit me well now, as my foot dynamic has changed. Therefore, if you are a Men’s Size 11 Wide, I have some very nice shoes, loafers, sandals, and flip-flops for you. Let me know.
– What does the staging level mean in cancer? My complete categorization, or staging as it is called, is Melanoma Stage IIIc, T4, N3, M0. It sucks to have your whole life and being as a person broken down into some alpha-numeric code. This staging means I had a large, 21mm cancerous tumor in my foot, which had spread some cancerous material to 3 lymph nodes in my upper thigh, but not to any other major organs in my body. Although we removed the tumor by amputating part of my foot and removed all 13 lymph nodes in my upper thigh with a lymphadenectomy, I still maintain this classification. Sometimes they restage you but not very often. Therefore, I am stuck with this classification.
However, all things considered, I feel very fortunate. I am alive. I often tell this story to people when they complain to me about trivial things. When you are feeling really bad, really down on life, really upset at the world….. here is all you need to do. You don’t even have to book an appointment. Simply pull up google and find the nearest Prosthetic Clinic. There is one within 30 minutes from where you live. Go sit in the waiting room for a couple minutes. That is all it will take. You will quickly really how lucky we are. You will realize how much you have to be happy about. I complain about my leg and my “stump foot” and make my Tom Dempsey jokes. These people who are missing both legs and an arm would love to have this stump. They would love to have the “really bad life” that we complain about. And the same goes for a Cancer Clinic. I hate to go to them and I cannot wait to leave. I am very lucky. And not a day goes by that I don’t realize that. In a really odd way, it was the best thing I was ever given.
I have a wonderful wife and daughter who love me. I am surrounded by friends and family who care for me. And if I have that, what else do I need? I golfed for the first time in over 3 years. Actually, I have been out a couple times since moving down here. I can’t play tennis or racquetball anymore. I can’t jog or play basketball anymore. But I can ride bike. And kayak. And go fishing. And do 1000 other things that many, many other people cannot do anymore. I am grateful for what I have. If this situation has given me nothing else, it has given me gratitude for what I have.
This letter got much longer than planned. I know some of you have been trying to talk with me lately and I have not responded. I wanted to wait on my tests and then the results. Thank you all for your friendship. I can honestly say that I appreciate your friendship.
May 14, 2014 at 11:48 am #64362Catherine PooleKeymaster
Very nice, thank you for sharing. I hope this will enlighten people about melanoma not just being a skin cancer. Your attitude is exceptional! Continue on this great path.
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