Bet you thought this was another post about Duke's mayo. Wrong again. I just wanted to share with you some of the nuggets I picked up at the Lymphoma Workshop in Minneapolis. Most of the speakers and panelists were from the world-famous Mayo Clinic.
"Everybody with Mantle Cell Lymphoma relapses": Actually, the Mayo doctor who spoke these words quickly corrected himself, "The vast majority of Mantle Cell Lymphoma patients relapse." Another doctor from the University of Minnesota Cancer Center repeated the sentiment a little differently. ("These diseases will come back at some point.") I had read this and had come to the same conclusion after spending hours poring over an Excel spreadsheet of more than 350 mantle cell lymphoma patients and their treatments. But it was the first time that I heard them spoken out loud by a doctor.
When I was first diagnosed, I thought I would do all the research, make the right decisions, get the best treatment, maintain a positive attitude and then this adventure would have a well-defined beginning and ending. Now I understand and am beginning to accept that this is a lifetime challenge.
There's power in prayer: Did you know that the Mayo Clinic has a department of Complementary and Alternative Medicine (CAM)? I always thought of CAM as herbs and mushrooms and special diets, but it's far broader than that narrow perception. Prayer, by both the patient and from others, is considered the most prevalent and powerful CAM. Yoga, meditation, music and massage also pack a powerful wallop in boosting the immune system.
Forbidden Foods: The transplant specialist warned us about certain forbidden foods, such as mushrooms and blue cheese, which are fungi and mold. When I raised my hand to ask about raw fish, I received a blank stare until I elaborated "sushi." "Oh, I don't eat that, so I forget about warning my patients, but I don't think very many of them eat that either," she responded. It's definitely a no-no post transplant, so I've been porking (or is it "whaling") out on the stuff.
There is always hope: A licensed clinical social worker from the Dana-Farber Cancer Institute in Boston shared this with us: "If you've lost hope, ask someone to hold it for you until you're strong enough to get it back." If I ever lose hope, please offer to "hold" it for me.
PS I'll get around to posting about the Stones party after I check in tomorrow evening.
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9 comments:
I think the main thing is, is to take things one step at a time...if you think too much about the future (and that goes for most of us who don't even have your condition) then you will just get completely overwhelmed. One step at a time. Plus, the docs can say "vast majority" all they want, but look at Lance Armstrong. He had only ten percent chance of living with his cancer, and he went on to win seven Tours.
Susan as you go for your stem cell transplant thought you would enjoy reading this note. Great to see you and we are thinking about you. Howard
From: "Mary Heidkamp" Date: Tue, 6 Nov 2007 22:00:11 -0600
Howard
First of all, I really enjoyed the party.
Before I left, I spent some time chatting with your friend, Susan, (the one who has cancer)—I was truly touched by her story and I believe she said that her surgery is on Wednesday of this week—like tomorrow.
I would love to have a snail mail address to send her a card. I was moved by her radiant spirit as we spoke!
Please let us know how she does with the stem cell transplant…. I am praying that all works out well for her.
Mary
Dr. Mary L. Heidkamp, CEO/President
Dynamic Insights International
www.dynamic-insights.com
1033 Erie Street, Oak Park IL 60302-1902
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That must have been an incredibly emotional conference. Glad you went. I do have a slight problem with a doctor forgetting to warn her patients not to eat something because she doesn't eat it and doesn't think many of them do either, though.
Lisa, I should have added in my post that relapse is not a death sentence. There are MANY treatments (and many more new ones coming down the pipe) for relapsed MCL patients. Very positive!
Janet, I was equally horrified on many levels about the sushi omission. I think I was mainly horrified that an entire population of people are missing out on such a delightful food.
And the whole experience further strengthens stereotypes. (Minneapolis denizens about So. Cal. residents: GROSS! They love raw fish.
So. Cal residents about Minneapolis denizens: GROSS! They don't even think about eating raw fish.)
Howard, I'm very touched by Mary's note.
Good thoughts and prayers going up to you this morning Susan! May you be comfortable, confident and as relaxed as possible so your body can best benefit from this advanced treatment. We'll all be rooting you on!
Stay in touch and let us know when we can come by, even if it's just to wave at you from the hallway. :-)
Hey Susan, that's good to know about all the new treatments for relapses and that it's not a death sentence if you do have one. But who knows, you may not even have a relapse:)
Dear Susan, I will be doing what I call "Daniel prayers" for you, Susan, three times a day. Remember Daniel is the one who was thrown into the lions den but the lions never ate him. He prayed three times a day... I have your photo on my wall at home and work so I can pray for you everytime I look at your beautiful face.
Sushi yum! I especially love the ones with the black sesame seeds! That doctor seemed hauty about her ignorance! I' ll bet she only likes vanilla too...Love, Suze
I am holding a lot of HOPE for you, Susan!
h ealth
o ptomism
p rayer
e ncouragement
I love you with all my heart! Love, Suze
You continue to be in my daily prayers during your stay at Hotel Hope. Thanks for the reminders about meditation boosting the immune system - another reason for me to remember to do that before I'm trying to fall asleep at night!
I guess the good thing about knowing that there is a non-sushi-eating population is that means it is possible to live without sushi. Hard to believe, but apparently it's true.
I love the idea of someone holding hope for another person. I think, even though I didn't know it, that there have been times someone was holding hope for me. It's something we do for each other intuitively, but talking about it makes it even more wonderful.
So even though you haven't asked, I'm holding out hope for a sushi-filled life for you in the very near future.
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