Ok first off, I have wanted to participate in an Ironman triathlon
since this first time I saw one on TV. I
don’t know why, there’s no sane reason. But,
truly, when I watch them, it is an emotional experience for me. The people who do them are inspirational and I
think I have always just wanted to prove to myself that I can propel my body
140.6 miles in less than 17 hours. Plus,
I have an even bigger reason to prove it to myself now that I have CLL. Hopefully I can be one of those inspirational
people too.
Having said that…NEVER get the hairbrained idea to train for
an Ironman! It’s definitely a part-time
job! So, yesterday, I got up at 5:30 and
drove to the gym before work. The pool
was full so I ran 3 miles on the treadmill and then swam for 45 minutes. Today, I woke at 6, took Fras to the bus for
his Science Olympiad competition and then did 1-hour of Yoga. I am now doing a 2-hour bike ride on the
indoor trainer. At some point this
weekend, I’ll do a 2 hour run on the treadmill too. This is all leading up to the “hard-core” 16
week training plan that starts in 1-week.
Fun times!
You know what, I LOVE IT!
My fear is just getting run down, and then sick, and then not able to
train the way I want to. So, I’m trying
to be smart in all of my training, and take it easy when I need to. I’ll certainly keep y’all posted!
I need to give props to Troy too, he ran 18 miles
today. So, he’s certainly not slacking
by any means. And, he has another Kidney
Stone that he’s dealing with. POOR
GUY! He’s certainly a rock star! I’m happy we are in this together, so we both
understand what the other is going through and why they need to spend so much
time training!
Last, I told you about this article that I read. I liked it, however, there were a few things
I thought were pretty blunt. Since I
bear my soul in this blog I thought I’d share the article and then also tell
you what I found helpful and hurtful
(see my red comments inserted in the article). Also, I haven’t been as sick as this guy, but
sometimes people find out they are sick and then are immediately out of
commission. I’m glad I was healthy
enough at diagnosis to deal with the emotional stress without also making
treatment decisions and being sick. I
can’t imagine! With everything a patient
is dealing with, the best thing you can do, I think, is be there WITHOUT asking
what you can do. When someone asks: “What can I do?” most the time, they don’t
get an answer. People just say: “Oh, we
are good” (even when they really aren’t!)
Hopefully this isn’t offensive to anyone, but I think it is
good to read from the patient’s perspective.
My Semicolon
Life: What to say to a cancer patient
By Brian Mansfield, Special for USA
TODAY
Updated 8/11/2012 11:13 PM
When USA TODAY's Nashville music critic Brian
Mansfield was diagnosed with colon cancer at age 48, he figured that
a lifetime of Southern-fried foods, extra-large sodas and stress eating on
deadline had brought it on. Turned out he had a genetic syndrome that gave him
an 80% chance of developing colon cancer. He'll chronicle his life with the disease
- and with only a small part of his colon - in a series of weekly installments.
What's the very best thing you can hear from a friend when
you've got cancer?
"I'm coming over. What can I bring?"
My friend Ed calls me every week and asks me this. Ed is
bigger than me and louder than me, and he puts me at ease because I know I'll
never have to worry about talking too much around him. When Ed thinks I haven't
asked for enough, he comes up with his own ideas.
The first time Ed came over, I asked him to track down a
nutritional-shake powder at Whole Foods that people had recommended to me. Ed
not only figured out what I was talking about, he also brought yogurt and
smoothies and the very first copy of his new album. (I know it's the first
copy, because he numbered it.) When I couldn't think of anything the next week,
he showed up with a box of bagels, a couple of Bruce
Springsteen bootlegs and an autographed album from J.D. Souther.
Everybody should have a friend like Ed.
I've read several articles lately about what not to say to
someone with cancer. I hate those articles, because I've said almost everything
in them to other people, so I end up feeling like never speaking to a sick
person ever again. Instead of rehashing those articles (though you should know
it's considered bad form to tell a person with a terminal illness that your
brother died of the very same thing), I'll focus on the best things my wife,
Nancy, and I have heard since my diagnosis. Maybe they'll give you ideas of
what to say during the awkward times.
I can personally say that the very worst things I
heard were opinions on what I had personally done wrong to myself to “bring on”
cancer. Some cancers are different and
are caused by lifestyle, but mine is not.
If my doctors don’t know how I got it or how to cure it, some dork on
the internet certainly doesn’t either.
Never tell someone what they did wrong to get cancer! Believe me, they’ve already asked themselves
that question a million times and if they did cause it, they know it.
It also sucked hearing about the person who had my
cancer and died. DO NOT DO THAT! I am now very abrupt, probably rude, but if
someone starts talking about cancer and it puts me in a bad or depressed
mindset, I tell them to stop talking. Sorry
if I’ve ever offended anyone, but I don’t need depressing information filling
my already overloaded mind! The only
thing I can control is my attitude and I am determined to keep positive.
If you find something truly helpful or
breakthrough, please continue to share.
Don’t be afraid to, just say, “check this out – it may or may not be
helpful” but know that I may not follow through with your suggestion and that
is OK. I still appreciate it.
Here's a personal favorite:
"We're opening a bank account for you. And while we're
at it, we're going to refinance your house."
Now, the point of this is not necessarily to give your sick
friends money. But you may be able to apply your expertise or your interests to
their situation in specific, if out of the ordinary, ways, even if it's
something as basic as cleaning house, doing landscaping or bringing fresh
vegetables from your garden.
That said, it's hard to beat our banker friend who created
an account for us at her bank, knowing that our expenses were about to rise and
our income could drop. Then, she let our mutual friends know they could donate
anonymously to it. After that, she took a look at our financial records and
figured out a way to refinance our house and consolidate some existing debt in
a way that not only lowered our monthly payments but also paid off our house
five years faster than our existing plan.
That's one of the few acts of kindness that actually made
Nancy cry. It's right up there with the neighbors who organized our online care
calendar so friends could sign up to bring food, and the woman who came over
and folded clothes with Nancy for three hours the weekend before my surgery.
Every case is different. For some people the above may be needed. I am not posting this because we need
money. At the moment, we are fine. But I did get my new job so that I could get
prepared for the possibility of not being able to work and also so I could get
benefits. Cancer rocks your financial
world!
I was, however, overwhelmed with gratitude and appreciation
by the one person, Troy’s student, who held a bakesale in my honor and gave us
the proceeds! We donated it to Huntsman
for research, but her kind act was truly amazing! She didn’t ask us, she just did it!
"If I had to pick one kind of cancer to have, I'd pick
yours."
OK, not everyone can pull off this one. But I have this
reporter friend whose family is shot through with cancer of all varieties, on
both sides. We got to swapping horror stories one day, and the cumulative
weight of her tales of caring for people and burying people was truly
awe-inspiring. Once she'd established her credentials, she laid this comment on
me, and it was the single most encouraging thing anybody told me. It
acknowledged the gravity of the situation, steered clear of false optimism and
placed my situation in a context much broader than my personal experience. It
beat any dozen versions of "You can beat this!" (Although I like
those, too.)
Instead of this, I’d rather hear: “I ran a race in
your honor!” or, "We donated to Huntsman to help cure cancer"! Instead of deciding which one you’d rather
have, let’s just work to find cures for ALL of them!
P.S. I like
all the people telling me I’m strong and can beat this. Thank you!
Please continue, and do that during the Ironman too! :)
"What's going to be the hard part for you?"
I've mentioned this one before, but it's so good it bears
repeating. When I first went public with my diagnosis, while everyone else was
asking, "How are you feeling?" "What can I do?" and
"What happens next?" (all perfectly good questions, I should add),
one friend went right to the heart of the matter with this question. It pushed
my story ahead, bypassing the small talk and giving me the opportunity to
express what concerned me most about my illness. It was what I'd been longing
to answer, even though I hadn't even known what the question was. It's an
all-purpose question that still allows for a different answer from each
individual. It's the question I'll remember to ask others.
This question also may give you an idea of what
you can do to help, without being asked.
"How are you doing today?"
That last word makes all the difference, differentiating the
question from the more common "How are you doing?" — or the dreaded
"How are you?" It implicitly acknowledges that the person
asking understands that cancer is a day-by-day journey, with unexpected twists
and turns. For example: Today I'm a few weeks past surgery and feel like I'm
recovering nicely. But it's possible there's another tumor inside me that I
don't know about yet, and my mind-set could be very different once I get my
next set of test results. But today? Today I'm doing great.
"Let me send you something that helped me."
The comments after any of my columns will give you a taste
of the advice people want to offer. My cancer was probably caused by
fluoridation, dehydration and a Western diet. It can be helped, maybe even
cured, if I just change doctors, switch from an acidic to a basic diet, take
herbal supplements, study epigenetics and claim the promise of God's healing
power.
Or cut out all sugar, fruits, meat, starch, wheat,
acidic veggies, etc. After all the
recommendations I received, I should sell my house and move, only eat green
leafy vegetables, take a shark cartilage pill daily, never exercise (exercise
caused my cancer, I was told), ignore what my doctors are telling me because
they are paid off by pharmaceutical companies, etc. etc. I also got some really good advice:
1) Listen to my doctors, they are experts in this
field.
2) Listen to my own inspiration and stay close to
God.
3) Continue to exercise and stay as healthy as I possibly
can.
4) Don’t worry about what I can’t control, only allow
into my head positives.
5) Enjoy everyday, and do what makes me happy.
6) Listen to my body, when I need to take it easy; do
it, and don’t feel bad about it.
7) Don’t feel guilty about what decisions I make that
are best for me and my family.
Everybody's got a suggestion, and getting inundated with it
is the price I pay for the occasional piece that really helps — like the
recommendation that I get guaranteed renewable life insurance on my kids before
I have them tested for my genetic disorder. But there's no way I can follow up
on every piece of advice.
Lots of people told me about books they found helpful in
their times of trial; two people sent me copies of theirs. Those are the ones I
read. Me too! I
read the books people actually gave me. Lots
of people had dietary suggestions; one person in California shipped me a
meal-replacement formula he really liked, even though he knew I could find it
in Nashville. That's the one I eat. I take the things my aunt and sister actually
bought me too.
Here's the deal: If you know something you think could make
all the difference in the world to someone with cancer, just buck up and send
it to us. We don't care where help comes from, but we don't have the time, the
energy or the money to track down every suggestion somebody throws at us. AMEN!
Did a book change your life? Great. Send us a copy, even if
it's used. If you're convinced your supplement will make us feel better than we
have in years, prove it by buying us a bottle. If you're a nutritionist
offering unsolicited advice on how we should adjust our diets, then you better
be ready to show up at our doorsteps with a box of vegetables, a cutting board
and a blender. Otherwise, you're just grandstanding. And teasing us. We don't
have time for that nonsense. We've got cancer.
AMEN!
If you do send something, don't follow up. Don't say another
word about it. We won't be able to use everything we get, but we'll appreciate
the thoughtfulness behind every bit of it. If it works, we'll shout it from the
rooftops and be more grateful than you'll ever know. But we'll try to make sure
you do.
I'll leave you with a helpful comment a new acquaintance
received. Soon after her diagnosis, someone called to say, "I know a lot
of people will call you and want to bring you food right now, and it will
probably be overwhelming. I'll check in on you in six weeks." She called
again six weeks later, almost to the minute.
AWESOME!
That's my kind of friend.
Music that makes me want to live
Cancer has changed the way I hear music, more than any other
life event except my marriage. Songs I once appreciated only on a surface level
now strike deep at the core of my soul. Some inspire me; some terrify me.
Others that I might have liked before, I've got no use for now. I've also got
more time to listen, whether it's during my morning exercise time or while
lying in a hospital bed. These songs form part of the soundtrack to my cancer
story.
O' Be Joyful,
Shovels & Rope
God's Sure Good,
Dr. John
I Need You,
Chelle Rose
You Can't Fail Me Now,
Bonnie Raitt
Rest Easy,
Andrew Peterson
I agree! If the song “If I Die Young” comes on the
radio when you are near me, please immediately change the channel. Kelly Clarkson’s “What Doesn’t Kill You Makes
You Stronger” was written for me – I’m pretty sure! :)
That’s all for today. I hope the article and my comments weren’t
offensive. I really don’t need anything
right now, so don’t think I posted this to guilt you into doing something for
me! But it just really spoke to me and
hopefully it will be helpful to you for OTHER people in the future.
Rock On!
