Sunday, August 8, 2010

The Mother Of All Surgeries.

I won't say the title doesn't scare the living shit out of me, because it does.
But I've got a date anyway. So I guess I will hear how brave I am or something. I'm not brave and I can't figure out how the hell I inspire anyone just by getting up and doing what needs to be done. And some days I don't even do that. Don't get me wrong- I WANT to and I'm working on it. But it's humbling and more weird than anything else to hear that I would inspire anyone at all. I'm much more used to hearing how I made someone laugh- that's not inspiring- I mean, it's NICE to make people laugh. It makes me happy to do that. There's nothing better than soomeone genuinely laughing at you being funny on purpose (so that is laughing WITH me, right?). I'm SOOO not used to people being all serious around me. I don't quite know how to respond. I kinda give an awkward smile and say thanks. What else do ya do?

And since you can't tell me to shut up and get on with it, I've managed to get off track within the first 5 sentences of this post.

Sorry about that.

ANYWAY- I do have a date set for the MOAS. September 16. Only 2 days later would have been the fly date for Italy. Instead I will be on my ass with tubes hanging out of me and hopefully under some SERIOUS medication. And actually September 18, 2009 was the date of my first POS (Piece Of Shit) surgery. Otherwise known as IPHP or the POINTLESS surgery. And YES, one day I will get over being bitter but not anytime soon.
I was happy to finally meet THE Dr. Sardi. He seemed to be on top of things and seemed to genuinely care. He said he will be testing my cancer against a variety of chemotherapies to see which it responds best to- and he will use THAT chemo to do the wash. Makes sense to me. For those of you who don't know much about the surgery- It's a 10-18 hour surgery, I will be in the ICU for a day or two, I will be on a ventilator, I will have a catheder, an NG tube and probably a few other tubes for various purposes. The hospital stay is typically 10-14 days. Dr. Sardi said it will feel like he's run over me with a truck... twice. And hearing from others who've had the surgery- it's about right. Woo. Hoo. But at least he's honest. I don't want to go on and on about him because I don't really trust myself anymore. I've shown nothing but poor judgement in picking doctors. The last smart pick was Dr. Cook- my PCP and my daughters' pediatrician. That was 4 years ago. So with all the brain cells I've fried I am trusting those around me to help with decisions.
My sister has been there for 98% of doc appointments and surgeries. She's asked questions and I should have listened to her- or at least turned her loose on Dr. Arnold. (I can think of a lot of people I'd like to turn loose on him.) And I wish I could just take her with me to all my appointments because she's kind of like the voice of "What the Hell?" instead of the shrugging of the shoulders and saying "hm, whatever you want, Doc." when it comes to me- but isn't so aggressive when it comes to her- so I try to be that when she needs it. I was glad she went with me to Baltimore. I hate that I can't trust my own judgement now. I hate that I took up for Doctor Arnold because I THOUGHT he was doing all he could for me-- of course I thought that I wanted to be a ballernia when I was 8 too.
bah! Shut-UP, Rachel.

Anyway- Dr Sardi will be just getting back from a conference in Sweden about the HIPEC, I believe. AND the following Sunday a walk will be held in Baltimore to raise money for and awareness of the HIPEC. ( Odd coincidence. My girls are actually going to be there for the weekend and will be participating in the festivities. I'm still trying to hammer out the logistics of who will be there and when and who will be taking care of the girls and so on. That ALONE is stressful enough.

Until check-in on September 15th, I get to be there and have fun at Iris' birthday party, go to New York for the first time in my life, check out the Warren/Belpre football game and do a few boxing workouts.
My stomach has never looked worse- My self-esteem is on the fritz.... feeling fat and hideous. I want to lose a ton of weight but will have to just aim low because docs don't want me dropping pounds. Kinda wishing someone put me on a strict diet.

Oh- did you catch the New York part? A friend (and many others) has done a bunch of legwork getting me a dream trip to New York with the family. Statue of Liberty, Coney Island and a carriage ride through Central Park for the girls. Time to buy a couple of tiaras.
I am humbled by the kindness of others. I found out that people I know, people I kinda know and people I DON'T know were all conspiring to get me the New York trip I'd been wanting. Yes. People I DON'T know. It's freaky, overwhelming, humbling and amazing at the same time. I can really only hope to pay it back by paying it forward. I hope that the shit I stir to get hospitals to be more accountable and easier to deal with will benefit someone in the future. (And that is just the tip of the 'stir' iceberg... beware)
I don't think of myself as socially awkward, but I haven't fiigured out an elegant way of being on the receiving end of charity. It's been over a year and I still don't know how to NOT be awkward when someone wants to GIVE me something. I always find myself thinking I should have done something different to say thank you when speaking with someone. ugh. I don't ever want ANYONE thinking I'm not grateful- because I don't know how to properly convey my gratitude except to say "Thank you." a million times. Just know- I don't say stuff I don't mean. And those 2 words are the most sincere words that come out of my mouth. I put "Thank you" right up there with telling my girls "I love you." Yeah. It means that much. It may roll off the tongue easily and some people throw both phrases around like nothing, but those are the 2 most important phrases in my opinion. Don't say them if you don't mean them.

That being said: Thank you all for reading and caring. It means more than you know.


  1. Wow! Seems like he is THE doctor. I certainly hope so!
    I don't really know what to say, except, good luck, Rachel! I think of you always.

  2. You're welcome. :) As people have said to me many, many times during this (ahem) 'journey'- You've been through a lot, you ARE brave, you are loved, and you deserve all the good things people want to give you. So let them give.

    I hope Dr. Sardi is everything he needs to be. Praying for the best possible outcome for you. Have a fabulous time in NYC!


  3. I wish nothing but the best for you and your family, you have fought harder than most I have seen and I know from reading and following all you have gone through you will continue to fight, as most women and mothers do.

  4. Rachael
    What a wonderful post,I can relate to almost everything that you spoke about.About that being inspirational part I think people pick up on your ATTITUDE and your will and drive to live,having a sense of humor when many would crumble.

    I am looking into plane flights and I may be participating in the walk on September 19th.Rachael I think I can help you and answer some of your questions that you have.Point out some do's and don't...what PA-C you want pulling out your jp drains and chest tubes (I had a total of six!) Where your caregiver should stay (Baltimore is not suburbia)...stuff like that.

    I am soooo glad that you have your date set...I was in very good shape and I still lost 22 pounds! Don't worry about your weight you will have "Super model status" shortly after your MOAS!

    Shoot me an e-mail if you want to talk and remember Sheboygan Dan knows everything about this damn disease and also has your back!

    Time for you to start preparing both mentally and physically to KICK CANCER'S ASS on September 16th!You want to go into your MOAS as strong as you can focus on your cardio...walking,running if you can, or what worked for me was riding a bike 15 miles a matter where your level is now you have some time to improve before your big day.Your efforts now and it is something you have some control over will payoff after your MOAS.

    Kiddy up!

    Sheboygan Mark

  5. Both you and your sister, Micki, are awesome women. I am so glad that you two have each other. Yes, Micki can ask the tough questions, it's the Master Chief training plus the bigger fact is that she cares about your health and she loves you more than anything.
    We all love you and want to help relieve a small portion of the stress that you are under. People do that by giving prayers, time, money, tears, a hug, a smile, and support. This means your family, friends, and even friends you don't know yet. I know it's hard for you to accept these expressions of support, but you have always given the same to anyone in need, even strangers.
    I remember going Christmas shopping with you back when you were in high school and working at the steak house. You took some tags off the tree with Christmas wishes and bought some little 9 year old boy a spiderman figure and an old man a pair of slippers. You bought these gifts, wrapped them and put them back under the tree for someone you didn't know because you care.
    Now people want to care for you, you have already paid alot forward and you will do it again, but for now, relax, enjoy your life, and let people show you they care!

  6. Glad to see you've picked someone for your MOAS. I have nothing but the best things to say about Dr Sardi. He was my husbands Dr in 2005 for his MOAS and my husband is still going strong. 5-yrs PMP-free. We will be down for the walk with our son (will be 2 at the end of Sept). If you want vistors or someone for your family to walk with, please contact me. Jennifer ( I'm also a PMPbellybutton member.

  7. Hi Rachel: I just found your blog and I'm so happy! I was dx'd in Feb of this year, have 3 iv chemos to go (FOLFIRI) and will then get HIPEC most likely in January. I am also very very afraid but am repeatedly told that it is necessary to get back to our lives. BTW I was also diagnosed with stage 4 goblett cell adenocarcinoid with signett cell tendencies, whatever the hell that means. I'm so happy to have found you bc now I can pray for you. For some reason, I have found deep greatitude and peace with this dx and agree that it is because, as you quoted, "There is no such thing as no chance." and I truly believe that I'm going to win this war. Thanks so much for starting this blog. Kelly