Yesterday I got a call from my case manager. She is a nurse that works for my insurance company who calls to check on me when I've been discharged from the hospital. She usually asks where I am in my treatment and how I'm feeling. She's a pleasant enough person, but yesterday she hit me with a dose of reality.
When she described the chemo and radiation I am about to receive, she said that looking at those patients is like looking at someone who has been through Hiroshima.
Hiroshima. Thank you. I needed that.
She talked about how most of the time the patients just ended up being sedated and sleeping as they are so sick. She said how great it was to see those patients later on because they looked so different and so healthy, but I still was stuck on the word Hiroshima.
I am the type to undermedicate. I feel like I take so much stuff already, that if I don't need it, I don't want it. And I'm really weird about being incapacitated. I don't like to be doped up or given something that will make you sleep. I like to know what is going on. So the thought of day after day of drug-induced sleep is really unsettling.
Yesterday I hid. That last chemo med, The Red Devil, has made my stomach feel terrible. Most of the day I try to ignore it, but last night I finally gave in and just went to bed so I wouldn't have to feel the pain.
But there are days where I do just want to hide. To sleep. So I don't have to think about this. I just want to sleep through it all for the next six months. Maybe that's why I've been watching tv lately. To zone out. To block this whole nightmare out of my head. But it just doesn't feel healthy.
Perhaps that is why you lose your hair. So that every time you look in the mirror, it is a huge reminder that you can't run or hide. That you are sick. That you do have a challenge to face.
But how do you face Hiroshima? How do you do this without freaking yourself out? I want to hide, but I can't. So I watch GI Jane. I talk to my friends. I make myself get out of bed. I look at pictures of Zoe. I write. I pray.
And most days this works. I don't know what will happen. I know this wont be the last time I feel like this.
I think this weekend I will take a break.
I can do this. I just wish I could sleep in.
Your assignment is a sentimental fun one. I'm feeling sassy. I want you to kiss your significant other today. Kiss them like you did in the beginning. Kiss them like you mean it. If you don't have a significant other, I want you to do some flirting. Find someone to flirt with today. Like do some Olympic flirting. Go out somewhere tonight, dress cute, and just flat out pick someone up. You don't have to do anything beyond that, just flirt. If you have a significant other, maybe go out on a date this weekend. Remind them why you got together in the first place. I'm in isolation, so for now, I'll flirt vicariously through you all. Besides *gasp,* there are much better things to do in bed than hide.
pffffffff. Are you sure your case manage wasn't
in that movie you watched yesterday.
I am sure she is nice as you said-but don't buy
into what she said-cuz it isn't all factual.
Some of what she said is wrong. Just remember
she is a case manager. NOT YOUR DOCOTOR. She
does not have M.D. behind her name. Nor is she
on the transplant team at M.D. Anderson.
Sorry Deb now my panties are in a wad-so maybe
I will have to take them off and go pantiless
here at work. (yes laugh at that idea)
DO NOT LISTEN TO ALL THESE STORIES!!!!!
PLEASE. The best analogy I can give you would
be the following while it is very simplistic
y'll (I hope I did that right) will get the
pciture. When women sit around and tell their
version of giving birth you hear oh this and oh
that. It's never the same for anyone. This is
no different.
Your assignment for me is to write down:
30 things that make you laugh.
I would like to see them here on your blog.
If you do that I will make a list of 30
things that make me laugh. I have some great
ones.
Oh yeah if you want a laugh look at what Lisabeth
did on our blog and follow that link to the
other womans blog. Pure silliness, but very
funny.
I think Lisabeth will have her homework up
for you today.
Big Hugs
Nikki
Posted by: Nikki at January 27, 2006 06:54 AMWhile I realize that she thought she was doing you a service by telling you how bad it can be and that you will recover, I think her method sucks.
I think it was somewhat irresponsible to make a comment like that --
I'm sorry if I seem pissed - it's just that I have a spot for you in my heart and I'd like to shake that woman.
I am sure it could be terrible (actually, I don't know anything of the sort) but did she mention Nazis? How about the apocolypse?
Why not just say that some people become very sick from the treatment and feel better if sedated?
You might want to have a conversation with someone who is more qualified to tell you - good and bad - what to expect. I am sure that even someone who speaks plainly and accurately will not bring up images that the whole world sees as shocking and upsetting.
That just wasn't professional.
Posted by: blackbird at January 27, 2006 07:29 AMSome people say idiotic things without thinking. I'm sure I'm guilty of that myself, in spite of my best efforts. I hope you will not let this get you down. --But of course you won't! What am I saying?
Posted by: karen at January 27, 2006 07:46 AMWhat a dunce! Someone who works as a case-manager with cancer patients full time ought to know better than to make "Hiroshima" comments. The fact is that the transplant procedure affects everyone differently. Some people do get pretty sick. We met others who, while clearly in aggressive cancer treatment, had a bad day here and there but otherwise lived life pretty normally (minus hair, of course).
I'm off to complete your assignment now...
;)
Posted by: amanda at January 27, 2006 08:04 AMSpeaking of "She's A Bad Mutha" I am going to
use my Yiddish word today for a good cause.
The word is zetz and that word means smack.
Our sentence; I am going to zetz Debs case
manager. I think it was Blackbird who made
the comment-poor choice of words. Has your case
manager had a stem cell transplant. I bet not.
Was she at Hiroshima-I bet not. Was she in a
concentration camp-I bet not-A mad Shoshie
is not good, when Shoshie is pissed she says
FUCK and I have these rug rats and I have to
watch my mouth. We saw a transplant and what
we saw was not what she said. Maybe she should
look for a new job-she seems a little rough
around the edges and lacking in the tact department. Call her back today and tell her
for me to FUCK OFF.
(sorry this is your blog and I just said a
really bad word)
Love,
Saint Shoshie
Hugs to you, love. You CAN get through this. I know you can. (and yeah, I think your case manager should be zetzed, totally)
I can certainly understand your wish to hide, Deb. Give yourself permission to do that for a few minutes, a couple of hours, or a whole day. Then, MAKE YOURSELF do something different, if you can. It is SO hard, I know...
I wish I could do more than offer words on a computer screen... you're in my thoughts.
Blove you. Take care,
Kelli
I have to say--I like your case worker. She's giving it to you straight. Scary, but so much better than butterberry asshole rainbows and fairies. It gives you a basis of knowledge. And hey, who knows? Maybe you won't be that bad off and you can thank your stars for that. Or maybe you will be and then everyone can tell you how wonderful you look when you're on the mend. Either way, the truth is awesome and it takes a strong person to tell you those truths when they're so scary.
Love you, sweetie. Hair or no hair. Hiroshima or Goddess of the Universe. (Just don't beat me up.) :-D xox
Posted by: Ms. Pants at January 27, 2006 08:50 AMI'm sorry that happened. Sometimes people just don't know what they're saying or think about it at all. Please don't base your experience on what anyone else tells you. Nikki is right, it is alot like childbirth...different for everyone. If I were there, I'd give you a great big hug sweetie. Peace.
Posted by: Traci at January 27, 2006 09:08 AMsleep? ;)
You keep fighting girl -
Oh, Deb. I am so sorry you have that awful image in your head. You need to wash it away with love and laughter because you need to be in a STRONG place to face this. I am sending you love and humor for STRENGTH.
I wish I could send you a pic of the husband's face when I slip him the tongue. It's gonna be PRICELESS. Of course he'll probably hold me down and lick the side of my face in retribution, but it will totally be worth it just to see the look.
Cheers, Deb. You are really "spreading the love" around town this evening! HA!
Posted by: sally at January 27, 2006 09:52 AMI see that Shoshie has now given your site an "R" rating. She did the same to me, talking about shmekels and such. tsk tsk
People say stupid shit. They just do. All people, at one time or another. It's a human thing. You get to decide how much power to assign it. I'd vote . . . NONE. It was a dumb, insensitive thing to say, and as many have pointed out, it was inaccurate anyway.
"Hiding in bed" could be a very good thing, as long as it's purposeful and time-limited. Let's call it a retreat. A time when you give yourself permission to step off the conveyor belt, breathe, pray, and gather your resources, to get ready to step back on and move forward. Sending love.
Posted by: Susie at January 27, 2006 10:21 AMYOU are different. Fuck Hiroshima. I agree with Susie too, so long as you don't fall into a long- term mental rut, hiding in bed could very well benefit you in the long run. Don't run from that if you feel the urge.
Love you lots sweetie. I'm gonna go get my flirt on.
Posted by: Maddie at January 27, 2006 11:11 AMI probably won't see my wife until tomorrow, as she works days and I work nights, but first thing when I do...!
Hide, sleep, watch TV, escape however you wish, just remember we are all here for you, and pulling for you!
alan
Posted by: alan at January 27, 2006 11:36 AMOK, here's me in search of lips to kiss.
*walks around office complex with lips puckered; finds no takers*
I tried the flirting, and my boss said, "Knock it off, your contract's not up until August."
Will my assignment still be valid if I do a James Brown? "Jump back - gonna kiss myself!" Because really, the romance has never gone out of my relationship with myself.
Posted by: Bucky Four-Eyes at January 27, 2006 11:59 AMI put up my MEME and Blogger is being a bitch.
I want too put up a few pictures of MEN. A quiz
for you to pick out which boy is mine, and which
one is Shoshie's.
I will have Friday night delight in your honor.
Can you come to my house and we will hide you.
I am guessing you are neutropenic? I will wear
a mask and ship my kids out of here. We can
get in our jammies, watch movies, laugh, EAT,
tell funny stories. And talk about why a transplant is not HIROSHIMA.
Lisabeth
Posted by: Lisabeth at January 27, 2006 12:33 PMI finally got it working now you can come and
laugh Deb
Lisabeth
Posted by: Lisabeth at January 27, 2006 01:13 PMHer words -- thoughtless and inaccurate as they are -- are merely words. They cannot cause your transplant experience to be horrendous, nor can they keep you from a speedy recovery.
Even thinking about what you are going through is painful and exhausting. How much more difficult it is for you! But your courage and grace under pressure, and compassion and sense of humor have triumphed this far, and I just can't believe they won't ultimately see you through the transplant as well.
Hold your head high, (after you are done hiding in bed)!!!
Posted by: eclectic at January 27, 2006 05:06 PMDitto everything said above!
silly woman (case manager, not you!)
My husband's going to be in Methodist downtown in a few days having surgery.
I'll buy a latte at Starbucks and drink it in your honor.
Posted by: Nancy at January 27, 2006 06:55 PMI love reading your stuff, because your attitude is so wonderfully liberating and powerful.
Thank you.
Good luck.
Posted by: hamel at January 27, 2006 07:36 PMHiroshima? Isn't that a good thing? The people of Japan are such a beautiful people.
I think I'm turning Japanese. I think I'm turning Japanese. Oh really think so, think so, think so...
Posted by: sis #2 at January 27, 2006 11:19 PM