Heather Murphy: A friend from an Andersen Consulting project in 1992 who has survived intestinal problems that put her on Long-Term Disability for 4 years.
You are already doing so many things to help your recovery. You are approaching it with intelligence and questioning everything the doctors say. Remember a few things:
1.) Doctors "practice" medicine -- there's science, but also a lot of trial and error.
2.) They may have medical degrees, but that doesn't mean they are smarter than you. Even when they know more about your condition, they do NOT know more about you. Trust your gut and fight anything that doesn't feel right. I can see from your journal that you're doing this. I just want to encourage you to keep doing it.
3.) Never go to a doctor appointment alone. Even if you just take a friend along as a note taker, don't go alone. Along with the emotional support, you get another set of ears listening with you.
The most important step you've taken towards recovery is reaching out to people and asking for help. For Type-A, self-reliant people, this challenge looms large. It took me way too long to reach out to people. I feared being a burden and all that other stupid stuff. Meanwhile, all I was doing was denying myself comfort and not allowing those that love me to give me support. One day I started crying in front of a few friends – something I never did – and they started laughing and smiling because they were so happy I finally trusted them enough to show them how hard things were. Another time I remember being shocked when I ran into a casual friend and her husband and they told me how they were talking about me just the other day and hoping I was feeling better. It never crossed my mind that people were thinking about me. I just kind of assumed that once people didn't see me, I would leave their minds. Luckily, I was very wrong in this assumption.
My illness came out of nowhere and took a while to diagnose. It was a nightmare of intestinal problems. Then the treatment of one illness led to a much more serious condition (think Murphy's Law), and then my body just stopped working correctly. I couldn't work full-time for four years. I'm back working full-time again, and I couldn't be happier. I treasure every day and even the worst day at work is good for me because I understand the alternatives.
It's funny that you use the term “cured.” I guess the answer would be “no,” I’m not cured. But, I learned to manage things and slowly but surely things improved and continue to improve. I count myself as lucky. Even on the worst days I feel stronger.
I will keep you in my prayers. I can even send you a few prayers that helped me when I had especially hard times.
Nadia Younes: A friend I marched right next to in the 1984 Garfield Cadets Drum & Bugle Corps who was diagnosed with Coroidal Melan oma (a tumor very near her optic nerve) and treated in 2001.
As you may remember, 4 years ago I was diagnosed and treated with Coroidal Melanoma (a tumor very near my optic nerve). Where this type of cancer is rare, the experience of being diagnosed at a young age with a rare form of cancer was scary and in the end, life altering. I remember the whirlwind of trying to make decisions, gather information, etc. It can be so overwhelming. I know you have a lot of people e-mailing and talking to you so I will keep updated through your site, but I'd welcome and love talking in person if you find yourself wanting to talk with someone who understands the emotional roller coaster a cancer diagnosis can bring.
Looking back there were a few coping things that really helped. I found a few things very helpful:
1.) Don't focus on the negative side of any statistic. So much is guesswork in the medical profession. After hearing from doctors, asking questions and doing my own research things like mortality rate stats, stats about the amount of vision I'd lose, reoccurrence, metastasis, etc. became problematic to keeping my mental health up -- a key component I believe to my body’s ability to heal, to have a great immune system, to be emotionally and spiritually ready for all that faced me. In other words, at some point your own journey will be a personal one (and when have you ever found yourself in with the “norm” on statistic measures?!). When all the research gets overwhelming, unplug yourself from it for a bit.
2.) Connect in meaningful ways to friends and family and people; the world around me was always important, but cancer and my own personal facing of mortality made this more so (to this day). Life really is about making memories for me and with those I adore.
3.) You know through Drum Corps and through your brass ensemble and any dear relations you have that sometimes (and I would say -- OFTEN) there are powers manifesting themselves that we really do not understand and that ANYTHING is possible. Hope -- above all else -- really can prevail (even after those scary, soul-searching 2 AM teary, prayerful moments with yourself).
4.) I am so glad you are researching what alternative and/or holistic health approaches might compliment your Western medicine approach. I was not willing to go native with alternative therapies in lieu of the traditional surgeries and radiation I had. But in conjunction with some more Eastern approaches, I felt I greatly improved my odds (and if nothing else, felt I was doing something to help my body be able to face what it had to). I could share a very interesting acupuncture story with you if you are ever interested. Eastern and Western medical practioners need to talk and they just don't yet.
I have no doubt that the universe is unfolding as it should and that even though this is a very stressful time for you and the many who love you, you too -- like many cancer survivors -- will be positively changed as a result of this experience. Once I got through the treatment (I am still "recovering and watching”), I began to see the gifts that having cancer gave me. I wouldn't wish this on you or anyone else but I have complete faith that you will be brilliant though all of this. Be well and stay in touch, and I wish you lots of laughter and love endorphins. All the best in health and love ~
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