Really? Moderate Intensity Exercise?
An open response to the following article:
http://www.foxnews.com/story/0,2933,593874,00.htmlDear Ms. Schmitz,
I know you are not a cancer survivor, and yet I still appreciate your concern. "[Moderate intensity Exercise] during and after treatment is safe and beneficial for these patients, even those undergoing complex procedures such as stem cell transplants." Unfortunately, your message is a bit misguided. Above all, doctors should tell cancer patients to listen to their bodies.
During treatment, there is a prevailing internal voice ("do the best you can") which begins when you wake up and ends only when you fall asleep. This applies to everything from eating, a flight of stairs, and brushing your teeth. Do the best you can. Try to walk. Eat and drink. Read. Smile. Remain positive. If you can do all these easily, take the next steps. Try to do your job. Take care of your family. Complete your regular routine.
Cancer patients want to maintain their "old" lives, unchanged. It's impossible, of course, but it's the goal. Anyone with the energy to exercise will get up and move. There is no cancer patient sitting on a couch, eating cookies, reading a book, and loving the relaxation. DOES NOT EXIST.
"Cancer patients and survivors should strive to get the same 150 minutes per week of moderate-intensity aerobic exercise that is recommended for the general public..."
To add the pressure of an organized exercise routine during treatment is, in a word, insane. After treatment, absolutely. The brain starts firing again as the poison exits. You can feel your body want to move again. There are physical therapists specializing in this area, in fact. The movement--still under the "do the best you can" mantra--can only do you good. And when you feel you can't do anymore, you rest your body until it can move again. Essentially, baby steps toward restoring your normal self.
At least the panel has it almost right: "[Doctors should take] into account [the patient's] general fitness level, specific diagnosis and factors about their disease that might influence exercise safety." Sadly, dear panel, it doesn't come down to exercise safety. Few will pull a muscle. They're going to collapse from exhaustion due to pushing themselves too hard.
I went to treatments, appointments, and consultations. I took my medications, listened to my militant nutritionists and followed every bit of advice I was given to the best of my ability. I did all I could to avoid hospitalization and keep my blood levels high enough to continue treatments. Moderate exercise was not on the radar. Even my hair hurt.
I appreciate your advice to doctors, Ms. Schmitz, but please recognize patients should be told they can exercise moderately if they feel they are able. Basically, do the best you can.
Sincerely,
Jenny's Belly
(PS You're missing a "d" in your last name)
Maybe I've figured it out?
I spend a lot of time trying to figure out why I'm here. I know a lot of people do, but I honestly feel like I was given a second chance to experience life. I basically put myself in the category of those who have died on the operating table only to return to their earthly bodies. It's hard for many to understand, but I feel like I'm on borrowed time. And since you don't get something for nothing, there must be a reason I'm still here... but the more I've looked into it, the more I think maybe the purpose of life isn't to DO something, but rather to BE someone.
So I don't have to invent anything fantastic, but rather make a lasting impression. I struggle with perfectionism in some areas of my life, so "trying to be the best" is not something I'm going for, but rather, to be kind to people. I'd like to be there for people. Be a good listener.
The fact that my dog passed away this summer from stomach cancer bothers me to no end, especially since it took me a few months to come to terms with it. Stomach cancer is rare in dogs and rare in people, so what the hell are the odds we would both have it? And I'd like to throw myself into research and talk to all of my doctors about it and frankly MOVE as soon as possible because clearly there's something in the water... But it's something I can't quite handle, so instead I offer it up.
I see my oncologist on December 15 for my 4 month check-up. No CT scan for a few more months. I always look forward to those scans....
Cancerbook
I was bored on my computer and started catching up with all my cancer friends on "Planet Cancer". The part I pay attention to now (besides the articles, etc) is basically Facebook for cancer people (friends/family/patients/survivors). Sounds torturous but its actually comforting. You can always find someone in worse shape than you, and you can also find people who feel guilt because they aren't ask sick as someone else. I have to admit, my favorite people are those who are on there because they THINK they have cancer. Haven't seen their doctor yet, they're just self-diagnosing. Like one woman who went on and on about how she thought she had cancer and was looking forward to dying. It was unintentionally a complete insult to everyone on there struggling for their lives, but I think everyone treated her kindly.
Planet Cancer is for young adults, basically 20-39 (under 20 is generally pediatric cancer, over 40 is no longer 'young adult'). They didn't have the stuff they do now when I was going through treatment. They changed the format to facebook-ish about a year ago. There's still only one other stomach cancer person on there. She's the only one I'm aware of out there in this universe. I know its rare for a YA to get stomach cancer, but COME ON. Its not unheard of.
Which reminds me that I have to sign up for the Dana Farber
one-to-one program, where you make yourself available to newly diagnosed people. I have to do an all-day training first and I've never been able to squeeze it in. But anyway, I really should. It would have been nice if someone had been there for me.
My next CT scan is in about a month. My last lab work in December came back very good. My red & white blood cells are 'babies' for the most part, which is cute to think about. They're very 'young' so I'm told (I guess they can tell b/c they're small) but at least there's promise they'll grow up. :) Neutrofils? I can't remember what they're called precisely. I don't have many adult blood cells, but my doctors say as long as I have the young ones I don't have to worry about the very low adult levels.
I've finally accepted that nothing is forever. I don't always remember, but I do believe in it. I don't mean that I'll LIVE forever. I mean, if I feel terrible, the feeling will pass. If I buy some blueberries and save them, they will eventually spoil. Know what I mean? Nothing is permanent.
Tony Snow
Its been a very, very difficult weekend for me. Lots of emotional setbacks. I wasn't able to do anything at the condo because I basically imploded.
Tony Snow got cancer about the same time I did, and his upbeat personality really helped showed me the way to handle it. And he helped me make the decision to share everything about what I was going through. When his cancer came back, I was hit hard. I was at work when I found out, and I had to leave for awhile. I went to church. Which was the first time I'd been to church during my whole cancer...uh, whatever you call it. I wrote a poem, which is not me at all. I was a wreck for a few days, until I realized I was handling it worse than Tony himself. Then I cooled off, remembered to keep living as usual as best I could, and eventually stopped worrying.
His death somehow took some hope away. That's the best way I can describe it. Having hope is the one thing that keeps a cancer survivor going, and I know Tony would be mad at me for feeling this way if he even knew I was alive. A lot of people latch on to Lance Armstrong. I'm sure there's a stand-out breast cancer survivor I haven't noticed. Just its my opinion cancer survivors have mentors. Someone who reminds them they can fight and when there's no recurrance, to just live their lives in every moment. When you've faced mortality as a definite thing, not as something hazy in the future, your life changes.
I actually thought at one point "Well, I never got married but I guess I had a good run." I remember thinking of all the things I'd wanted to do "someday" but wouldn't get the chance to do it. Unless you've been told you have cancer, I think maybe you just can't understand, but that's okay. I'd rather you weren't told those words.
And there's just no way to get back to the way things were. I try hard to do things I want to do and avoid things I don't want to do. But I have a scan coming up in a few weeks and I'm awfully tired so its scary. Maybe its nothing. But "maybe it ISN'T nothing" is always there, just below the surface.
I can't watch any coverage of Tony's death. I wasn't able to be alone yesterday, but I'm alone now and doing okay. Still emotional, but not as anxious. Not all cancer survivors are rocks. You can't will yourself through it. Its the luck of the draw, and you do your best. Sometimes are harder than others.
I'll be okay. :)
warm blanket
Oh, there's nothing like a warm blanket when you're sitting in the infusion chair. Its even a little warm in the room, but they ask me if I need anything and I usually ask for a blanket. It makes you feel like a 2 year old its so exciting and comforting at the same time. Sigh. I couldn't even read I was so relaxed. :)
SO--I got the 2nd of eight lovely iron infusions. I was stunned last week when they told me the one I'd had didn't do crap and I'd need 7 more. I never got that much last time, maybe 2 years ago. Holy anemia! Well, I did go to bed at 8:30 last night (I was reading) so I guess maybe I am really tired.
My endocrinologist thinks they'll put me on a regular cycle of iron to keep me from dipping too low. Oh, my vitamin D is up where it should be--the super pill works! Love vitamin D, its been repeatedly proven to be a cancer-fighter. Start taking it! You! Reading this!
Doing well other than being tired 24/7. I actually am happy to be doing to Dana Farber weekly now. I do love that place. There's nowhere else like it, where I KNOW I'll be 100% taken care of, no matter what the issue is. I think some people get the same feeling from religion or their gramma's house.
And then you top of that feeling with a warm blanket... and its a miracle they get me to leave at all. :)
Iron (wo)man
I'm so excited--I've finally gotten my iron levels to tragic levels so they're giving me an iron infusion tomorrow at Dana Farber. The iron pills just aren't cutting it and there's basically none in my body (safe levels are 37-170 and I'm less than 17.) As for iron storage, I have "3". Apparently that breaks my previous all-time low, which was 5 when I still had cancer.
Turns out my crap stomach isn't processing much of ANYTHING. I have to get monthly B-12 shots, I'm on 50,000mg of Vitamin D (an insane amount if you ask me) and now I need the infusion of iron. Oh, and my calcium is low, but I haven't completed all the tests to find out how low and therefore what to do about it. Baby steps. Exactly how to people who have had by-passes live? I guess they have the same issues, its just not publicized. Just sometimes I feel like its only me.
Most importantly, I'm feeling okay, just tired and cold. Both are expected when you're anemic (which I am). I never take my coat off at work. My fingers are like ice right now....
I'm in good spirits though, and not due for a CT scan until late summer, so if they can just get my blood to be in the normal ranges I should be doing okay. :)
The Summer Day by Mary Oliver
Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down into the grass,
how to kneel down in the grass, how to be idle and blessed,
how to stroll through the fields, which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do with your one wild and precious life?
[I really like this poem and thought to share it.]
so many doctors
I have a handful of doctor's appointments next week, one of them I'm psyched about. I see my lovely oncologist, and there's no CT scan so the worst he'll have to tell me is that my blood is crap. Which I already know it is. The best thing he can tell me is that I'm going to need an iron infusion (please please please) but I doubt I'll be that lucky. Maybe I'll stop taking the iron pill "when I remember" (instead of twice a day--never) so that my odds of the infusion will increase. My mom is afraid to get a cortisone shot in her knee. I can't relate anymore, though I tried. A shot? Who cares about a shot! Who even cares about an infusion! Just don't poison me again, please. :)
The appt I'm excited about is with a physiatrist. Looks like I spelled that wrong, but if I'm getting this right, she's part physical therapist, part physician. That's how she was "sold" to me anyway. She will help me figure out how to exercise without destroying my back (much better, by the way) and with the extreme limitations of my stomach (can't lie flat, can't touch toes, can't be a little tea pot with a handle and a spout, etc etc). I'm excited to meet someone EDUCATED who understands (I read about her, she's a breast cancer survivor) from many different perspectives. Plus, I love almost everyone at Dana Farber so don't feel I can really be steered wrong.
I've also got my lousy annual exam with my PCP. Will be just glad to get it overwith. I always feel like its a waste of time. I meet with an endocrinologist later in the month, to make sure my bones aren't going to turn to chalk (as featured in previous post as worst nightmare). I haven't seen her in 2 years so its a good time to catch up.
I feel like setting up appointments with every other doctor just so I can meet with them all in April. Off the top of my head there are 2 more docs plus my dentist (who I will see after my cleaning in 2 weeks). Sigh....
Feeling well, though tired. Once I pass my lousy financial exam I can go to the neuropsych dept to be tested. I swear I have add. While studying for my exam I have caught myself studying my PENCIL, picking at the lamp shade, looking at my sweatshirt, etc I'm so easily distracted now, its a joke. Process speed sucks, retention is down, recall is crap, but on the up side, my hair has grown back curly, which is kind of cool because it was curly when I was a little girl. A lovely benefit to hair regrowth I didn't think I'd get to be a part of. Yay!
I heart nutritionists
I am so exited about this… I met with a nutritionist at dana farber today and she has actually dealt with other people who have had my surgery AND she understands exactly what my stomach problems are. BECAUSE--everyone else has these same week-long periods when they “can’t eat”!!
It’s a miracle to know its not just me. You have no idea... its like being told you're not the only human being on earth!!!
Even better is that she has a potential solution—she thinks that the surgery/chemo/stress caused the good bacteria in my stomach to get wrecked by the bad bacteria, and each time I eat its like the fermentation process is happening in my stomach… so if I take this pill (like super-yogurt) it will balance out the bacteria back to how it SHOULD be and she thinks make things much, much better. I am THRILLED!!!! She said there's no way I could possibly eat enough yogurt to balance it out so this pill gives me a leg up. The reason I will actually try this is because its not a "rest of my life" pill, and I can do anything for a few weeks.
Yay!! I'm looking forward to eating again :)
THE SCAR!!!
I just figured out how to take pictures using this computer... and I look so tired I think this is my most flattering picture. :) My lips have no color!
But really I thought maybe you'd like to see my scar. You don't do you. Sort of? Okay, here you go...and I find it hilarious that the whole thing doesn't fit in the screen (its farther up and farther down). Please ignore the ugly, unflattering belly. Hey, tattoos are too light to show up! This is your last shot as voyeur as I'm never going to wear a bikini and unlikely to become a flasher. Feel no pity, I LOVE my scar...
