Sunday, May 18, 2008

bad place

Every morning it's the same. I'm far away, in my dreams (last night, I was in Paris), and then, slowly, I wake up, feel the bed around me, feel the pillow between my knees, feel the slight soreness of my hip and in my back when I turn, and it all comes back to me: Oh yeah ... I have cancer. Sometimes, like yesterday and this morning, I think, I have cancer, and I'm going to die. And I get so depressed I can barely drag myself out of bed. I'm all bogged down with wondering: Is the chemo going to work? What if it doesn't work, and I nearly destroy my body and I still have these tumors, and they start growing again? What if I go through all this poisoned suffering for nothing? And what about the week that I'm hooked up to the ifosfamide? Will I be afraid to touch my children? They say my bodily fluids will be toxic, and that anyone else who touches them will be poisoned, that Steve will need to wear rubber gloves to clean anything that I've accidentally peed or bled or spit on. What about my sweat? I wake up in the middle of the night soaked with night sweats. Will that poison Daniel if he rolls into me? Will I be able to feed Ben his bottle, to hold him at all, without worrying that my poison is seeping into him? Will we have to wash all our bedding every single day, with gloves and extra rinse cycles?

If all these worries aren't enough, I've been having a nutritional crisis lately. I've read in a few places that sugar feeds cancer through the production of insulin. I think about the slice from Betty's Pies I ate last weekend, all the desserts people have brought over for us, all the sweet fruits I love to eat, like bananas and pears. Have I been causing my cancer to grow? Have I been unwittingly feeding this cancer with the foods I eat? People send me links to information about raw food "cancer cure" diets, juice fasts and enemas. They tell me stories of people who have been cured through changing their diets radically. And yet I read that a seemingly minor deviation in such a diet can have devastating consequenses or, at least, can undo all the good work. Is it worth it? Should I pursue a nutritional course of action; do I owe it to myself? If I don't, and my cancer gets worse and I die, will I have myself to blame for not having tried every possible option? There are so many decisions, so much guilt.

I feel like I am living in a nightmare.

31 comments:

Kerry said...

How I wish I could take just even a small portion of this away from you. You are continually in my thoughts and prayers. Many hugs and much love to you.

soapchick said...

Emilie - I am going to ask my friend Christian Z. to get in contact with you. He was diagnosed last July at age 38 with cancer of the sinus that had spread to his brain stem (nasopharyngeal lymphoepitelioma). He did 3 or 4 rounds of chemo and it barely shrunk the tumor. He then refused to do any more chemo and set about to rid his body of the cancer through a variety of alternative therapies, working with holistic doctors. Diet being the number one thing. He also did things like receive vitamin C injections, hydrogen peroxide injections, electrotherapy, special saunas, and other things I can't even remember. He had a PET scan 6 weeks ago and the cancer is gone. The regular doctors told him in January he was going to die if he didn't do more chemo. They are absolutley astonished that his cancer is gone, but the alternative therapies worked. I am going to email him and ask him to contact you since I cannot speak to exactly what he did.

Donna-Marie Cooper O'Boyle said...

Emilie,

I am so sorry about all of your worries and concerns, especially that you are so sick and have a family. I am glad that you can voice your worries, though. The woman's ("Soapchick")comment is helpful I think, even though you have so much on your mind. Natural medicine can be really and truly powerful!

I will be praying for you and will continue to ask others to pray. I am so sorry that you have to worry about all of that poisonous stuff. Just keep praying and asking the Blessed Mother to give you peace.

May God bless you and your family in great abundance!

God bless and hugs,
Donna

jennifer V. said...

Emilie-

What difficult thoughts to sort out. Last summer we read so many thoughts of cures, my 'mom' even tried a few. The important thing is to verify them with your doctors before stepping into them full speed. Only you can make the decision of what the best treatments and therapies are for yourself. What ever path your choose, you must believe it is what is best for you. There can't be any what if's or doubts. Research your possibilities and go with your gut. No matter what the cocktail choice you make is, you will be supported in your decisions.

Madwoman of Preserve Path said...

Oh, Emilie. I'm so sorry you have these fears. It has to be downright terrifying. But know we all love you, and that love is very powerful. And know we're praying for you. God might get sick of hearing from all of your friends and think, "All right, already. I hear you!" :) This control over our lives that we think we all have is, of course, a myth. So give up these fears today and give them to God. They're too big for us. Let God handle them. He will.

Anonymous said...

Emily, I am so sorry. I wish there was something I could say that would take away your worries, but of course there is not. I am praying for you though.

Be sure to discuss all options with your doctor before trying anything radical. Then, as Jennifer V. said, go with your gut.

Ahuva Batya said...

Em, I cry for you when I read about these days you have to go through; the doubt and fear, and the sheer awfulness of it. I wish I could take this away from you. We pray for you every day.

Anonymous said...

Em, what a concise list of questions you are posing. Bring them to the doctor's office and don't leave without their best answers. They're too important to leave floating around at night. Use your fears to help you focus on your real concerns rather than have them work against you.

I'm glad the antibiotic seemed to have helped you. Try to remember that St. Francis quote when you're facing the unknowns. Maybe it will help calm the spirit enough to help you make your decisions and gather information.

Also, pie and sweets were probably wonderful spiritual tonics. Be kind to yourself about that. It's like having a glass of wine before you know you are pregnant-- you freak out about it but eventually realize you're really doing your best and that's all you can do.

-Laura S.

Jo on the go said...

I agree with Laura-- ask your doctors all those questions so that you don't lie awake wondering about the drugs' toxicity, etc. Get on the phone and don't hang up until you get answers. This is part of why they make the big bucks.

I am so sorry you have to go through this. Refined sugar isn't the best thing for our bodies, but you can't beat yourself up over the past. Go forward and decide if you're going to do a special diet. I don' t know how hard it would be to follow while you're in a chemo course, but you could do the diet once the course is over. Is there a doctor you could speak with who has experience with naturopathic treatment?

I know you must be overloaded with information, but all you can do is eventually decide on a course and then steer it. I think of you every day. Love from Wyoming.

Monkeymama said...

In the mornings I will say a prayer for comfort and peace for you as your day starts. I am forced up quite early here these days and am on Eastern time, so that gives me a good jump on the Central time zone morning. It won't take away the fear and pain, but maybe offer some support.

Christina said...

All those questions, and some seeming contradictions, must be so disorienting, Em! Hang in there as you try to navigate them. I'm praying you feel peace about the information and decisions you face.

Wordgirl said...

I have no words of wisdom, but I do have just the warm thoughts of a stranger. May this time be surrounded by people who love and nurture and wrap their tendrils of connection around you all.

My loving thoughts,

Pam

kristine said...

I wish I had the right words to say or could help take the 'bad' away. I'm constantly thinking about you and the guys, know that.

liz said...

I wish so much that I could take this away from you, even a little bit. You are in our hearts, and I am saying constant prayers for peace & strength.

Molly said...

I don't have any magical words of wisdom or advice except to be very, very wary of so-called miracle cures using unproven, unscientific methods. The fact that someone says that such and such treatment cures what seemed to be a hopeless condition is anecdotal and NOT scientific, therefore unproven.

You're such an intelligent, thoughtful person. Please use your head as well as your heart when making any treatment decisions.

Piccinigirl said...

I'm just praying..every day..for you. Know that you are always in my thoughts.

Jamie said...

Em, I don't know what to say. I do know that you should continue to research everything, but know that unfortunatly there is no one right answer when it comes to diet. I'm sure your doctors could give you a great referral to a nutritionist - it might help ease your mind.

But again, I just have no idea and I'm trying to be supportive - so take my advice or leave it :)

Carly Gates said...

Hi Emilie,
This is Carly (ECFE teaching assistant from last semester at Randolph Heights).I was wondering if you and your family ever needed a babysitter. It is important to go on dates with your husband! I will leave you my email address:
gatesvcm@uwec.edu
I would love to help out in any way.
-Carly

LutherLiz said...

How I wish I had answers to those questions but I'm clueless. I agree with the others to ask the dr.

Praying for you always

Anonymous said...

Jesus.

As far as the whole bodily fluids being toxic or whatever, remember it is only for a week. I know this is small comfort. And as you know, others have had to go through bullshitty type treatments as well.

As far as the second paragraph of this thread, remember that if there were an easy cure out there, you would have done it. Please don't feel guilty for not having done something a certain way. This is why people are horrified of cancer, because nobody knows, really, what causes it.

Lance Armstrong said that statistics show that more people are afraid of cancer, by far, than terrorism. I can see why. I am one of those people.

- Susanne

Amanda said...

Like everyone else, I am so sorry you have to go through this. I am thinking of you and wishing you all the best.

Heidi said...

You just do what you can. That's all any of us can do no matter what we're facing. Don't feel guilty for eating sugar; you may need to treat yourself on some bad days!

Would it cheer you up at all to know that, after 1 year of infertility treatment and now two and half years of adoption waiting, we have finally been matched with a little (and I mean little: 11 pounds at 7 months) boy from Vietnam. One more hoop to jump through, then hopefully we can go get him in July or August.

Believe me, throughout this ordeal I've had days where I couldn't get out of bed either. Just put one foot in front of the other... All that 12-step stuff really helps when you're facing loss. One day at a time. Live in the moment, as best you can, even if that means eating chocolate!

Heather said...

I have no clue how I stumbled onto your blog...but I'm a 36 y/o 2 year sarcoma survivor of sarcoma and lived through 6 rounds of Ifosfimide. I also have four kiddos. I'll be praying for you~

Anonymous said...

Hi Emilie,
Please don't beat yourself over what you have or have not done. If these special diets were a true cure, every cancer patient would be on them.

Also, please be cautious with regard to any "alternative therapies". While they may have worked with one person, I had a friend whose cancer spread out of control when she gave up chemo for holistic injections.

Please just ask your doctor about any treatment options that you read or hear about. It sounds like you have found one of the best doctors for your type of cancer, so be sure to quiz him about anything and everything.

You are in my thoughts and prayers.

Anonymous said...

Emilie - We know each other well, but I am writing anonymously for fear that I may be saying the wrong thing/stepping on toes.

I hope that you are OK with Soapchick's friend contacting you about his holistic treatments. As your friend, I sort of wished she had asked you first if you would like him to contact you. I am hoping that his information will give you something to discuss with your doctor, rather than scare you out of even trying chemo.

surly said...

Emilie, I'm so sorry. I wish I knew what to say. Please don't beat yourself up about some pie -- sometimes treats like that can do wonders, even if just mentally.

Tiffany Stuart said...

I am so sorry to read about all of the extra things you have to consider.

I pray that the God of all comfort comforts you with health and peace of mind.

I feel your pain.

Betseeee said...

I am so sorry you are struggling with all these questions and doubts. I suppose it comes with the territory, but I wish there were a way to be sure you were doing everything you can do, without wondering "what might have been..." so much. I don't imagine that exists. I'll be thinking of you.

Beth said...

I'm glad that you are sharing with us the bad stuff too. You and your family are in my family's thoughts often.

Soupy said...

oh honey
it has to be so awfully hard to deal with, I don't know how you've managed to keep you head up so far. Hugs and many peaceful prayers coming at you and your family

Mary said...

Emilie, everyone who sends you information about diet, nutrition, and alternative medicine is doing it with the utmost care and concern.

But none of them has had what you have.

Metastatic sarcoma has a life of its own. It feeds on whatever it can feed on. Please don't turn down a piece of pie because of this damn disease. You need to eat whatever you can eat, because whatever you eat will feed your entire body, not just the cancer. And then the chemo will kill the bad stuff. That is the hope!

If you can manage one of these special diets, and if you believe in it, then go for it. If it's too much for you, let it go. I believe in the power of quality of life as well as quantity of life. I bet you do too. Don't let anyone "guilt" you into anything. Do what you need to do!

I remember the power of waking up and realizing that my arm wouldn't work, that the pain was so strong, that I wasn't the same person I was in my dreams. It is really, really hard. Just do your best. If your best is getting up and washing the sheets only to curl back up in bed, then that is your best and I applaud you!