I'm done doing research on my type of cancer. Here's what I've found: 1) it's referred to as CUPS, cancer w/ an unknown primary source. 2) Only 2-5% of all cancer is diagnosed this way 3) Many times they can't tell the primary source even at autopsy 4) Only 10-15% of CUPS patients live past the first 9-12 months after diagnosis 5) Due to the wide range of possible cancer types, it's hard to treat 6) If you want to play statistics, my cancer is probably breast or lung.
The information I could find on the Internet is all pretty old, so I looked at the cancer library down at Mayo on Wednesday. It wasn't any more uplifting than the old stuff, so we're done with it. My case is all my own and there are extenuating circumstances to my situation so that the statistic above doesn't apply. First, how do I know it wasn't made up? Ask Brian, I used to make up my own stats all the time. My new stat for this situation would be something like 80% of those diagnosed respond well to aggressive chemotherapy. Now doesn't that sound better?? Second, there are all kinds of people that are diagnosed, wouldn't the 40ish, healthy crowd do better than the older sedentary crowd? Lastly, I have two small children whom are the most special people in the world to me and they deserve to have their mom around for a lot longer than the next 9 months. If I weren't around who would tell Jenna in a couple years when she will really need to hear it, that she is one of the most caring kids I've ever seen? Who would tell her how smart, beautiful and wonderful she is? She once said to me "how come you get mad at me sometimes, but I never get mad at you?" Ouch. Unfortunately she was right. Who's going to tell her that she is self possessed in a way that took me 40 years to achieve? She has the ability to stand up for herself that I'm not sure I could mimic even now. If I weren't around who would tell Kate that she commands a room as soon as she walks into it? Who would tell her that her ability to engage people will become one of her greatest assets? Who would tell her how smart, beautiful and wonderful she is? Who will tell her that her laugh, which usually comes very easily, is one of my favorite sounds in the world?
I've spent the last couple days pissed off because of the research and because I now have no white blood cells. Since I can't fight infection, I have to stay at home and avoid people who are sick. There is a chance I won't be able to receive chemo on Monday because of the white blood cells and more than anything I want to keep going to get it over with. So I was pissed off. Then Rana and Eric invited me in for some juice and made me laugh and just like the warm brownies, suddenly everything wasn't as awful as it had been 10 minutes before. Rana also introduced me to Julie today. She had breast cancer 4 years ago and it was SO nice to talk to someone who's been through chemo and surgery. She has such a wonderful perspective on the whole journey that I'll be thinking about that lunch for days to come. I also received a couple cards today, one was hilarious (thanks John), and the other beautiful (thanks Sharon). It reminded me of the incredible people I've met and had the privilege to call friends and of the incredible luck I've had with the people I get to call family. It's hard to stay pissed off when you have those kind of people around you.
13 comments:
Well for what its worth I had to take statistics 3 times in college because I just didnt get it. So if I cant get it than it must not make sense right? Same thing here, it doesnt make sense.
Only you will tell your girls those things, your strength and humor in this is amazing. I am praying for you and your family!
Old people take longer to figure out how to do this....Liz you are remarkable. I say this unequivocally and unbiased, although I always knew you were going to be trouble - I remember when Dianne had her 6th birthday party (you were 9) and things weren't going right, the cupcakes were wrong, the guests didn't bring the right presents, etc etc. You told Dianne that "you know, reality never lives up to your expectations". Since I had just found that out myself I knew we were in trouble as parents, I could never win an argument, I finally had to resort to "because I say so".
I know you feel that you are going through hell but remember - life is what you believe it is. Believe that with the unconditional love of your family and friends you can get through this, you'll watch the girls graduate, you'll get them through driving lessons and dating (when they're 35). You'll love them forever.
Prayer becomes hope
Hope becomes strength.
You have the strength - you can do this. We love you.
mom & dad
Someone told me this once....EVERYONE should video tape things they want to tell their kids as they grow up....NO ONE knows what is going to happen or when.
Oh, some things this person said were what you wrote & things like: how to apply makeup, what to do/not do in the teen years, how to handle peer pressure, etc...
I, being the procrastinator that I am, still haven't sat down in front of a cam-corder to do this, BUT...I try whenever we got the cam-corder out, to talk about what's been going on in our lives.
That reminds me, I'm supposed to be doing a video "catalog" of everything in our house...for when we go to Hong Kong. A friend of Robert's had a house fire a couple years ago....said everyone should do this. Yes, some things just never get on the "to do" list. lol.
I agree with Tammi & the stats...I love it that you made your own up a couple years ago for something. When I was in grad. school, I took a stats class of some sorts. The only thing I learned was that you can get a stat. to say whatever you want it to. HA!
I agree with your mom, too....that you are trouble! No, no, no...that you are strong!
Love & hugs to you,
Sue :)
Part 2: I forgot to add this:
"For the Lord your God is the one who goes with you, Liz, to fight against your enemies (cancer)to give you victory." Deut.20:4
Sue :)
Lizard, Lizard, Lizard
Your mom is a riot!!! So now I know where that comes from. And I know you think you are always right…but your not you know. The statistics say you have a 99.99% chance. I believe that in my heart. Becuae I love you Leeeezard! Gosh those girls are amazing. It is cool to be in love with someone(s) so unconditionally.
This morning when I woke up and saw the dusting of snow it made me think of you. I had this sense of peace and after talking to you I always have that feeling. You are very special too me.
So do you want a Beagle. I have an extra! The thing wants to eat more often than myself. How can it be! Do you want some help decorating for the holiday? I know how to do that? Do you want help with Christmas cards – I know how to do that. Let me know – miss you! Hugs, Marne.
Liz, remember stats are just numbers, anything with numbers is meant to be broken. These CUPS cancer stats will also be broken by my dear friend and wonderful mother of 2 beautiful daughters. Continue to stay strong and BELIEVE that you will beat this cancer and be around for those days when your girls need to hear how awesome they are.(And the days you need to beat the crap out of anyone that says/thinks any differently) :)
Praying for your continued strength, Liz!
Angie
OMG Lizard - you are pissed off and that is a GOOD thing - it makes you determined. I have never known you to run away from anything - take it on and you will beat it!!!! Your girls are amazing and that is because they have an awesome mommy (and daddy). Hang in there girl stay strong. If your white blood cell count is too low for Monday am treatment, no worries - it will only put you off a day or two.
Keeping you in my heart, thoughts, and prayers.
Lots of love!!
Janet
You have every right to be pissed up. This whole things sucks and damn if you need to put up with it. Sock it in the face as I know that you can. You are strong and powerful and can roar better than most (even though you have that cute little sweet face, we know better).
Statistics are only guesses and you are brighter than that and you have A LOT of people who love you and are praying for you so cancer go to Hell !!!!!
I'll be pissed off too !!!!!! Just for you Lizzy !!!!
I think that all those stupid stats are telling you is that you are going to be one of the 'pissed off' people who conquer that cancer beast. You are fighting a good fight! Keep your head up. I agree a 100% with your Mom....your attitude and strength will get you through this. Take care.
Lizzard –
Remember what I always said – it’s better to be pissed off than pissed on. I hope that made you laugh. You know you are such a wonderfully strong person – you will make it through this. Remember having to make it through all of those painful SDG Score Card meetings – Yuck – but we made it! Also, statistics are just that – numbers on a piece of paper. YOU however, are not a statistic – you are one hell of a strong lady and you have one heck of a support group. I know you are going through a lot of pain (of which I have no idea of the hurt) – but remember we are all there for you, and we hope to help you endure the pain. Love you…. You make sure to tell everyone to take good care of you – otherwise a whole fleet of people will be breathing down their necks.
Lonna
Liz,
I am sure it is difficult to deal with numbers while fighting the battle of your life. Miracles happen every day and you have the will and determination to be in the other side of the statistics -- the ones who beat the odds. You are a fighter and you don't give up. That does count for something. You are not rolling over -- you are fighting. I pray everyday that thing battle will be won very soon.
Clearly, the statistics don't apply to you. I did a little internet research myself a couple of days ago and reached this same conclusion.
I think you're absolutely right to stop reading about CUP. The journal articles I read provide vague info about a broad diagnosis that covers a lot of different people (who may already be sick, elderly, and weak) and who all received different (if any) treatments. What I know about you is that doctors have agreed on only one thing: you are an unusual case.
Your chemo is busy working. It must be harder than heck to have to wait around for things to level off so you can take another hit. Let me know if you’re up for some yoga to calm our minds. I can find a teacher who can come to you. If you like, I’ll do it with you. Or, like Sue suggests, we could make videos of ourselves offering perspective or telling “don’t-do-what-I-did stories” to our kids -- in case we get hit by that bus tomorrow. These will make lovely audio/visuals for your kids to play for you at your 90th birthday party. Or, we can put on surgical masks and ski gloves and check out that museum you wanted to visit. I'm right next door for you -- Rana.
Liz:
This is my first time writing on a blogg-which confirms that I am officially old. This is also my fourth time of trying to get this published-which re-confirms the old part. Liz L called me and updated me on you. I wish her call was to plan another Wales reunion. You are handling this with your great sense of humor and courage. You will get through this and your girls will hear your words of wisdom. I am thinking of you and praying for you and your family. Take care.
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