Hi. I’m Kate. Turn ons include IV drips, PETscans, and organic fig newtons. Turn offs include whining, hospital gowns, and artificial sugar.
Let’s see how much life I can squeeze in between work, chemo, sleep, and scans.
Being Green
A very wise frog once sang ‘It’s not easy being green.’
We all know the song and its message. Kermit was teaching us to accept the unique physical characteristics that make each of us special. Kate has always loved that song too, but lately that particular line has a very literal meaning. Simply put, she’s having a very tough time now that she’s actually feeling green, sick that is.
As she’s written before, she never felt accepted by the chemo crowd because she didn’t look or feel the part - no nausea, no hair loss, no nothing. She’s had two rounds of her new treatment and is feeling every bit of it. The day after treatment is great - she calls it her ‘chemo buzz’ and she’s very energetic, bouncing even. But then the buzz wears off…
She told me there are two layers to the pain - the first is a general dull muscle ache that’s very similar to a bad hangover (like there’s a good kind?). It’s the second layer that gets to her. The pain is localized in what she imagines are the tumors. I’ve tried to tell her that she should try to think of this pain as a good thing - that the treatment is working, but, as you can imagine, that’s hard for her to do.
Kate asked me to write a post because she hasn’t been feeling very creative lately and I really can’t blame her. Anyone can slap together a few paragraphs when life is good, but it’s incredibly difficult when things aren’t so bright. I wish Kate would read her old posts and try to get back in touch with the girl that wrote those words. She’s still hoping for the best, but it’s much harder now since the pain has become part of her daily life.
She told me yesterday that she can’t stop thinking that the pain indicates that the tumors are growing, when in fact they’re probably just another side effect of the chemo. The logical side of her knows this, but she has a tendency to ignore that part of her. She might actually get some sleep if would just take a second to look at the timing of the chemo and the onset of the pain. I’m not the smartest frog in the pond, but even I can see that that makes sense.
In two weeks, Kate will find out whether or not this new treatment is working and I’m afraid you might be stuck with me until then. And, since I’m now the lead frog, I need your help - I’ve been trying to keep Kate distracted, but there’s only so much one frog can do. Please email her your dirtiest jokes, funniest YouTube videos, or cutest pet pictures…or just simply leave a happy comment. Every little bit helps.
With love from the lily pond,
Lucky
Anything to do with the word Chemo just has to be hard. At least that’s the way I see it. Chemo buzz. Chemo green. Just rest, know lots of us care, and feel better soon, Kate!
I have no wise words but I can do what you ask.. silly photos it is…
My dear sweet dog is a magical unicorn… or ya know… a dog with a post it i cut out on his forehead….
http://www.flickr.com/photos/72065973@N00/771515088/in/photostream/
Distraction coming your way. Here is a picture of a bunny with a pancake on its head.
Hi Lucky Please pass this comment on to Kate:
and imagine the pain as the tumors shrinking, giving up and realizing they are not welcome in your body. Their lease is up and you’re evicting them.
I know you don’t know me and I don’t really know what to say.I truly wish you all the best of everything. You deserve it. I found your blog upon researching and I can tell by your writings you are a very special person. SO many people are drawn to you and inspired by your writings. You have touched so many lives. I bet you could sell millions if you wrote a book. Please go back and read your previous postings and read the replies from the ones who love and care about you and the ones whom have stumbled upon your blog and are now drawn to you and cheering you on.. so many lives you have touched through your writings. You HAVE the determination to conquer this. You ARE a SURVIVOR. You ARE WINNING. Keep being stubborn
http://www.youtube.com/watch?v=VPFQ4kor3I4&feature=related
Hi - Here is a funny youtube moment — I only know Kate from the blog but I think she might find this funny! You have to watch it a second time and watch the guys eyes when he has the slip of the tongue — it is quite funny!
Tell Kate to imagine the chemo is hurting the tumor — it hurts her in turn but hopefully it will go away quickly!
http://www.youtube.com/watch?v=FrYRY6kx550
Hope this helps.
My mom is experiencing the same wave of emotions that you are. I try my best to help distract her when she feels down about the constant fatigue and pain from the chemo. I read your blog to her everytime you have a new post. It seems to comfort her that you are putting up one hell of a fight and she wants to be like you. I pray that you regain your phyisical and mental strength back so you can beat this monster!
Lucky, you need to tell Aunt Kate the girls said “KEEP POSITIVE AND KEEP BEATING THIS!!!” Also tell her they said “WE LOVE YOU!”
Hi Lucky — please send Kate boundless positive vibes. :+++++++++++
Also, tell her that I feel we are walking a similar path now; however, no road is ever the same. It is understandable, Kate, that you may not feel much like writing, but your thoughts, words, and fighting spirit are truly a gift. I will keep you in my thoughts & prayers.
As far as a distraction, mmmmm,,,, I’ll have to work on that one
For inspiration, check out thesurvivormovie.com if you haven’t already.
Take good care of her Lucky, which I know you are. Wishing you better days, Kate.
Hey, frog. I just made up a joke. What does a frog say when it is lying? “I amphibian”.
Don’t bother telling Kate. It’s way too corny.
http://www.youtube.com/watch?v=1j_fxs8mUcQ
Kate;
Your will to survive can help you through the rough spots. Visualize the tumor shrinking during the days with pain.
Hope that watching this video can make you laugh a bit.
God Bless
Hey Kate,
I’m sorry to hear about the effects that the chemo is having. I have a very bizarre sense of humor and have recently (thanks to the writers strike) fallen in love with Good Night Burbank (http://www.goodnightburbank.com/) and Abigal’s X-Rated Teen Diary (http://www.abigailsxratedteendiary.com/).
Both very original, very funny and very distracting.
There are always old episodes of ‘The Show, with Ze Frank’ (http://www.zefrank.com/theshow/). His new blog features a lot of fun stuff too (http://www.zefrank.com/archives.html)
Finally, if you are looking for really inspiring, you can do anything videos, the clips from the past TED conferences usually work really well (http://www.ted.com).
Best,
Scott & Holly
Hey Lucky,
I’m sending a joke e-mail to Kate with a picture attached. Would you please tell her about it and tell her she needs to read the text before opening the picture. And tell her I’m sending prayers, positive energy, and visualizing a PacMan getting rid of the tumors.
As far as a distraction, you know I am always looking for that, so will always come by if you’re in, or email you more fun stuff. Looking forward to Sunday, and you can be sure - no matter how you are feeling - that we will distract you aplenty!
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Hi Kate. I found your blog via i[2]y. I am 31 yrs old and recently diagnosed with stage 4 bile duct cancer (large tumors on my liver). I started chemo in mid-december and have been blogging about it regularly.
Anyway, I can completely relate with those disheartening feelings and negative thoughts when you are in pain. When I’m exhausted from the chemo, nauseous, or my liver is throbbing, I can’t help but think it’s defying the chemo and actually GROWING…or at the very least, NOT SHRINKING. It breaks my heart to think this. When I’m not so post-chemo miserable, I think positively, I am beating this, this is a road bump, I can perservere, this will not GET me, it’s shrinking shrinking shrinking. But then I get chemo and the world falls apart. And all the well-wishing emails and comments on my blog cannot penetrate that pain and that fear and that dark cloud looming above me. It makes me feel so alone. It is especially difficult when the pain isn’t immediately after the chemo but two weeks later when most of the drugs have left my body. THAT’S when I think the worst.
I’m sorry to sound like such a bummer. I just want you to know that you are not alone in this. I feel it too. There are days when I cannot get out of bed and I just feel miserable about feeling miserable. People read my blog and say “Ooo you are so positive! You are an inspiration.” But the reality is that I’m not always positive. Not always strong. Some days I couldn’t inspire a rock, if given the opportunity.
All I can offer you is prayers and strength. It’s wonderful that you have such a loving caregiver who will blog on your behalf. You take all the time you need to rest, get medicated, HEAL. Try to stay positive. If you can’t think positive, then just tune out, stop thinking at all for a while. Watch some TV and try again later. Take it hour by hour if you have to…minute by minute.
Take care and keep in touch. I’m adding you to my blog roll and I will be back SOON. Email me if you want to. I am looking for other young adult cancer fighters like me. You’re not alone.
Bright Blessings.
Ducks. That feeling in your abdomen are ducks. A Mama and her babies. They are swimming around and eating the tumors like they eat the nasty green sludge in the water. This is what Brian pictured when he did his radiation and chemo. The ducks started out sweet and cute, but they ended up being some nasty little things! By the end they wore rising sun headbands and carried large bamboo sticks which they used to beat and pry the tumor away.
I wanted to add a picture to this post, but have no idea how. I have a picture of our four kids wearing duck pjs. Light blue with rubber ducky’s all over them. The three girls have on yellow socks and our son was wearing blue. The youngest one was shrieking with delight and getting ready to make a break for it. Under the picture it says “Quack quack, Daddy” But for you, tonight, it says “Quack Quack Kate”
Maybe the ducks know Lucky…..
Hugs, Sheryl
Dear Kate,
I’m not sure where the tumors you are worried about are located, but I have had a liver full of tumors for many years and will probably continue to have them to some extent for the rest of my life (which I’m hoping will be a long, long, time). Whenever I have pain in that area, I can’t help but think the worst. At the same time, many who share my disease (a rare neuroendocrine cancer) have also felt this kind of pain, particularly when the tumors are being attacked by chemo or some other treatment and are, therefore, dying.
One thing I’ve learned after almost 2 years since diagnosis and almost non-stop chemo is that aches and pains come and go, and that when I think the worst about the source, I’m either wrong or forever in the dark. I’m starting to learn to roll with it and not try to second-guess it, because the old adage “this too shall pass” usually applies. That is a very hard thing to do. Somehow just letting go and saying to myself, “I don’t know what’s causing this and there’s nothing I can do except try to minimize the pain,” whether through meditation, pain meds, or something else. I have bone mets, and right now my back is killing me. I could obsess about the cancer or analyze the workout I did yesterday and its possible impact on my back muscles. Or I can just enjoy applying heat.
A word about pain meds: A lot of people are wary of pain meds, and for good reason. Some are concerned about the prospect of addiction, and others feel like they are somehow weakened by giving in. And of course, there are the side effects. But the meds tend to work, and if you can minimize your pain, you can rest and heal more easily. (I don’t know whether you ever read Leroy Sievers’ blog, but he posted a piece on that last week that prompted a barrage of encouraging messages saying, “Take your meds!”) If you don’t sleep, there’s no way you can get past any of these other challenges.
On a much lighter note, I take the same approach as Brian above. The key is to love those ducks no matter how nasty they get, though. Welcome the ducks and breathe into them!
Kristy
I wish I had something funny to interesting to say but I don’t.
Just want you to know I am still here reading and still praying for you.
Next week I am headed to Johns Hopkins for the Whipple procedure. I am told the morning following surgery “boot camp” begins (lots of getting out of bed and walking a bit). Knowing what a fighter you have been and continue to be inspires me to dig in deep for my “bring it on” attitude (there’s got to be some of that somewhere inside me, right? lol).
Thanks for sharing your strenghth and frustrations with us. I’ll be thinking of you.
Kate,
I just read your comment and I in turn have come to visit your blog.
I too hope you will get to the point that scans and all that fade more into the background. To tell you the truth, fear still gets me. I think I ran around like a chicken because I was trying to keep from thinking about it. It’s strange how this experience connects us. I will be thinking of you and have added your blog to my bookmarked sites. Hang in there.
Leah
Rough times. Agree with other posters about the need for sleep and rest — take your pain meds, spend as much time as you need *resting*. I know how hard that can be - but it’s not a surrender, it’s a stopgap measure to help get you back on your feet!!!
Cheering you on from snowy Massachusetts - -
Dorothy
One of my favorites…
http://www.youtube.com/watch?v=pv5zWaTEVkI
http://www.youtube.com/watch?v=aQxgv4QtKM8&feature=related
you are in my prayers……..here’s a little laughter!!
How about my favorite prayer? Will that cheer you up? It goes something like this:
“Dear Lord, So far today, I’ve been great! I’m in a good mood, I haven’t yelled at anyone, nothing at work has ticked me off, I haven’t charged anything on my credit card, and I haven’t eaten anything that ruined my diet.
However, in a few minutes I will be getting out of bed, and then I will need all the help you can give me! Amen.”
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