Friday, December 12, 2008

how am i doing?

It's easy, when people ask, to say, "Fine," or "OK," or "Not too bad," and I suppose in social situations, those responses have to do. But in a nutshell, I'm really not doing all that well. I haven't been since I got home from the hospital.

I have had many moments of resentment, bitterness, hopelessness, anger, negativity. When I mentioned this to Dr. S., his response was to offer to prescribe me antidepressants. It's such a medical response — more pills. "There's no reason you shouldn't be as happy as you can be," Dr. S. said in his always-calm voice, and I had to say, "Are you kidding? Can't you understand why a person in my situation right now might not be happy?" He just repeated the offer of antidepressants. I'd rather not go there for now. But I do think some counseling might be helpful. (Edited to explain: I am not opposed to antidepressants when they are the most appropriate treatment for depression, such as when it's clear there is a brain chemistry imbalance; but first I'd like to explore the possibility that my current frame of mind is situational, based on specific circumstances that I might be able to work through in therapy.)

My right lung is not working very well, after what it went through at the hospital, and my breath is really shallow and fast. I get winded at the slightest activity — coughing hard, walking across a room, turning over in bed. The right side of my back aches so much that I have trouble falling asleep. I have a nagging, persistent cough that is triggered just by my breathing and sometimes takes the breath out of me. These breathing problems seem to be getting worse, but I'm scared to call the doctor about them because I'm afraid I'll have to go back to the hospital. Even if that's for the best.

My hemoglobin level is borderline anemic, which may be one reason I'm so tired and lightheaded all the time.

I have a PET and CT scan on Monday, and while it would be officially great to learn that the last round of chemo worked, part of me secretly hopes it shows it didn't work because then I won't have to do another round of it. It was so hard, so toxic. I am still not over it, and it was three weeks ago. I don't have much of an appetite, and certain foods just don't appeal to me anymore. The next round is scheduled for next week, but I don't want to do it before Christmas. I think Dr. S. will let me postpone it. But ...

I'm hitting a wall in general when it comes to chemo. I just don't know how much more I can take. I am not a person who associates chemo with positive, tumor-killing thoughts. I saw it described in a recent newspaper article as "the scorched earth policy," and that rings true for me. I've had seven rounds of poison, and so far, it's only had minimal success. Stopping growth (or shrinking it, in one case) for a round or two but ultimately letting more new tumors slip through — tumors that are resistant to that particular form of chemo, so on with the next cocktail.

If this round is found not to have worked, the next option is Sutent, a pill form of chemo. It's been on the market for about two years, originally approved after showing success with gastro-intestinal cancers. I don't know how much success it's had with sarcomas. Meanwhile, it sounds pretty toxic. Can I handle it?

I have had moments when I just want to stop all treatment and lie down and let nature take its course.

And of course, that makes me feel like a bad mother, a bad wife. Who would willingly give up on her family like that?

But then I watch a silly-sweet movie like The Holiday, where Jude Law is a widower with two young girls, and he finds love with Cameron Diaz after thinking he'll never find love again, and it gives me this naive hope that maybe things will work out without me, that maybe I don't need to be so resistant to dying, if that's what the cards hold for me.

And I think about Matt Logelin, a flesh-and-blood widower, not some movie character, who is suffering so greatly but also surviving and, in some ways, perhaps even flourishing nearly nine months after his wife died, the day after giving birth to their daughter Madeline.

So, is it OK to give myself permission to die? Or should I keep on letting chemo drugs weaken me and make me miserable — but maybe buy some more time, maybe (though I'm doubting the odds) work a miracle? Or should I find some middle ground and take a break for a while with the intention of starting chemo again later? It's a question I really struggle with.

• • •

But I can't let the title question go without mentioning some of the things that bring me light.

Unexpected gifts, letters and cards from friends. And visits.

Hot baths, now entirely unencumbered.

I'm done with my antibiotics, and the infection seems to be gone.

My hair is still coming in. It's more than an inch long now! I actually washed it yesterday!

Books like Kitchen Table Wisdom by Rachel Naomi Remen and When Things Fall Apart by Pema Chodron, which help me delve into my suffering and negativity without judgment.

People in the medical community who actually show a human side, who look at me in the eyes and ask me how I'm doing — like they really mean it. And don't offer pills to address every concern.

A woman who comes over a couple of evenings a week to help out (play) with the boys and offer moral support, which enables Steve and me to do other errands around the house. She started out as a stranger and now is a friend, almost a surrogate grandmother to the boys. She brings cookie dough for me to make cookies with Daniel. On days when I'm feeling like a bad mother, she gives me hugs and tells me how sweet and wonderful they are, and how much she loves being with them.

My sister-in-law Sue, who takes time out of her busy family life and comes over every Monday to help me with the boys. We pay a nanny for that four days a week; Sue does it from the goodness of her heart. Her day has become so important to us, and the boys love her.

The fact that so many women I know are having babies soon. For some reason, this gives me such a sense of joy. It's a reminder of the full circle of life.

Acupuncture — the compassionate woman who administers it and the spiritual strength it gives me.

Our latest home-improvement project: a new, ultra-quiet bathroom ceiling fan and some new, professionally installed attic insulation to keep our house a bit warmer (done in tandem). Sounds super-sexy, doesn't it?

Small steps toward decorating the house for Christmas, and seeing Daniel's excitement over it.

And of course, the sweetness of the boys, and the incredible love and support of Steve, who is going out of his way to try to understand where I am these days and to give me all the space (or hugs and kisses) I need. Sometimes he just looks at me out of the blue, seeing something in me that I'm not seeing, and says, "I love you." I really was blessed with a wonderful family.

Oh — and I've been wearing this hat around in the past few days, so some part of me must be feeling feisty and fightin'. Right?

26 comments:

kristine said...

Oh, Emilie. I feel like I am without words - for once.
I am having a hard time collectng myself and found it made the tears stream even faster when I read the very last paragraph - about Steve.

I just want to come over there and hug you!

Wear the hat - embrace the hat!

I am sorry you are going through so much crap. You're not a bad anything for wanting to give up. Your body, mind and soul all have been taking a massive beatdown - you're tired and you are realizing it.

empy said...

Emilie, I am so sorry.

I don't think that there is a "should" answer to any of this. And I hate that you can't really TELL people how you're doing...day-to-day communication just doesn't seem to work for so much in our lives.

There definitely comes a time in many people's lives when they say "no more treatment." No one can tell you when is "right" or "wrong" to do that.

There is always the argument that these toxic drugs manage to cure or continue life for an incredible number of patients.

And then there is the argument for quality of life that is a very real and true consideration.

Do what you need to do in the moment of the decision. There is probably no decision about treatment that is going to make you comfortable, but there will be one that will make you a little more comfortable than the other, whether it is physical or spiritual comfort.

Letting nature take its course is not the same as "quitting." You will live powerfully until the very moment you leave, whether or not you are on chemo. And you are a good mother because you love and want the best for your children. Period. A very good mother.

Victoria said...

I am glad you are able to tell the truth here about how you are - how hard it is. Steve is as fortunate in you as you in him. I say this from the point of view of one who was widowed young with two small shildren by a man whose love was sweet and empowering. Love is stronger than loss.

Julie said...

Dang doctors always chasing things with medicine. I'm really mad at him for not being more compassionate and saying you should be feeling as happy as always. Uh uh! I'm glad you're fiesty and fighting in some small way, but that gets tiring, I'm sure. You've got to take a break and recoup sometime, don't you? I don't know. I haven't been there, but hang in there. I think the negative feelings are normal and human, and you're okay. Good for you to still be able to count your blessings. Keep it up. Know that even when you give up and don't care, there are others out here who care about you and wont' give up on you.

Sue said...

People continue to pursue treatment for different reasons, and I've seen many patients continue so as not to disappoint their families. I also know that being aggressive and pursuing all treatment options is a very American approach to cancer care. Only you can decide when you've had enough and I'm sorry you're in such a hard place. Sometimes I think an unintended consequence of the "fight cancer" message makes it more difficult for patients to acknowledge that sometimes cancer wins, and continuing to fight won't change that. I'm not trying to be negative - I know how very sick most cancer patients are and how much they struggle every single day. I'm so glad you can still find the bright spots in life that bring you joy.

MrsSpock said...

I love the hat.

I think your doctor has no idea what to say. He's a fixer, and he can't fix your suffering, so he does the only thing he knows how to do, offers to prescribe something.

Rebecca said...

Emilie, I don't know whether to cry, ache for you, rejoice in the pleasures you find in live, try to give words of encouragement (I can't find any), try to find some solution (the doula in me), or just sit here and stare at the computer.

I am amazed at how open you are about everything you are thinking and feeling. I think most of us would have the same thoughts, but few of us would be able to voice them.

p.s. I LOVE the hat.

Madwoman of Preserve Path said...

Emilie: Who among us can tell you, "There, there. Just fight, girl, fight!" But, in our heart of hearts, that's what we pray you can do: to steel yourself to all this suffering and will yourself well. We've heard of miracles happening. And like you, we want them so badly. So that's what I'm praying for, for you. I'm storming heaven with prayers. God hears my prayer, and I hope his will and mine are traveling on the same track. That's an Advent wish, you know.

I hope you can get a little rest this weekend, find pleasure in preparing a good Christmas memory for your family, and put pain on hold a bit.

Love, Pat

Janet said...

Knowing Dr. S as my oncologist too, I had to smile when you said he speaks in his "always calm voice." It took A LONG TIME for me to get him to even crack a smile. I suppose doing what he does, he has built a bit of a shield around him. Or...I like to think that way...and that he isn't really a robot, like I sometimes suspect. He's wickedly smart...but not touchy-feely at ALL. Bedside manner...they can't teach that in med school...an apparently isn't always learned even after years of experience.

I say bring that KICK ASS hat of yours to your next oncology appt. Perhaps don't wear it in the lobby (although I bet you'd have quite a flock of fans clammoring to get their own)...but definitely put it on when you are waiting in the exam room for Dr. S. (Have you notice they always put you in the same room to see him?...or maybe one of two rooms.) I'd LOVE to see the look on his face when he walks in the room, muttering his usual greeting and shakes your hand...and then sees you wearing that hat. I bed he'd actually crack a smile...maybe even a faint nerdy giggle might be uttered. That would be awesomely priceless!!

Sarah said...

Speaking from a SW perspective, antidepressants do increase the area of the brain that is affected by depression, making people better able to handle stress. We often separate mind/body/spirit, but in fact it is all connected...whatever is going on in the body affects the mind, it is a natural occurance. Ask the MD to explain how cancer and depression are connected...there is a lot of research in this area.

mnrn said...

I am so very sorry that you have to go through all of this. And you know here you never have to lie. We all love and respect you for your TRUE feelings. As far as chemo goes, you need to do what is right for you and your family. I want to you to know that even though I only know you from this blog (and am a fellow Minnesotan- Yay!), you have touched my heart in many ways. So, I wish you peace, an end to your spiritual, mental and physical struggles. And most of all, Happiness!

darcie said...

oh Emilie - I'm with Becky here in that I don't know what to say. I so wish that I could say something, anything...but I just can't find the words. As always, I thank you for being so open and so honest with us. Not many, if any of us can put ourselves in your shoes, not really anyway. It's ok to get mad, to get angry...you need to. Life has dealt you a really crummy hand right now - you have to take the time to play the next cards the way that you see fit. Only you and you alone can make that decision. We are here to support you in whatever those decisions might be. Keep on enjoying those sweet sweet boys of yours and please do let us know if there is something, anything - that we can do to make things just a little bit easier for you.

Danielle said...

Hugs to you from a creepy stranger in MS.

LutherLiz said...

Thank you for the reminder that prayers of discernment are as valuable as prayers of all out miracles. While I still hope and pray for miracle wellness, I also pray that you, Steve and your doctors can come up with the best decisions for your care, regardless of if it is an aggressive cancer-ass-kicking or a restful being still where you are at. Love and peace to you at this time and enjoy all those wonderful things you have to cherish!

Laurie said...

Emilie-I am at a loss for words. Just know that another person is praying for you and your family. Sending extra hugs your way.

battynurse said...

Love the hat!!
I can't imagine how difficult it is to wonder and question the things your dealing with. I hope you are able to have the strength and peace for whatever is next. Hugs to you.

Marketing Mama said...

Em,

Thanks for sharing how you are doing with a lot more honesty than the typical "I am fine" most people expect.

I wish I could provide some words of comfort, but as always I feel awed just to be witness to your journey. I hope you can find the peace, answers and direction you seek.

p.s. I also love Kitchen Table Wisdom.

Kelley said...

Emilie...I comment so rarely (bad, bad lurker), but I read your blog daily. I only "know" you through Liz's blog, but I think about you constantly. This latest post really touched me, but I've been inexplicably emotional lately and probably won't make much sense in trying to respond to it. The intensity of your love, your self-awareness, and your capacity for joy seem to me gifts that will stay with your boys and your husband for as long as they live. Whether or not you decide to continue chemo, I am hoping as hard as I can that they will also have the gift of YOU for a very, very long time.

Sarah P said...

Dear Emilie, the questions you struggle with have no clear cut "right" or "wrong" answers. They are shaped by what is right for you and your beautiful family. Thank you for making me think more deeply and question more profoundly. You have given me the wonderful gift of broadening my mind (and my reading material!)
I was wondering whether you are still looking at the laser knife (is that the correct term?) as a possible treatment? Are its effects are awful as the chemo? I know you were looking into it before your recent hospital stay.
Lots and love and peace
Sarah xxx

Heather said...

emilie,
this struck such a chord with me. I have a checkup Monday, and my husband and i were discussing the fact that chemo was worse than cancer, worse than the possiblity of dying.

I don't know if i want to rage against the dying of the light when that time comes...i'd like to think i'd leave a legacy of peace for my children, not a mother ravaged by toxic treatments. It's a hard thing.

Praying for you.

Monkeymama said...

Emilie, thank you for sharing all of this. I do wonder how you are doing, really doing, so I'm glad that you felt like telling us.

I hope you can find a counselor or support group or web board that will give you some good feedback for these questions - people who have an idea of what the different choices would mean. It seems like such difficult choices.

Jessica Griffith said...

Emilie,

I read your post and had three responses.

First, you are a wonderful mother. Whatever the future holds, Daniel and Ben will know how much you loved them, how much you wanted them and how you considered every decision based on its impact on them. Before we have kids, we plan on being perfect parents, but reality hits before we even leave the hospital with Munchkin #1. You have more challenges than most, but you are doing what all good parents do: the best you can, every day.

Second, I thought of a brief Torah study our rabbi led at a bat mitzvah service I attended last week. The passage was the story of Jacob's ladder, and our rabbi focused on the angels moving up and down the ladder. Why do they move up and down? (and why do angels need a ladder?) The discussion centered on a sort of give and take between humans and God, and I think that translates into a balance between accepting what we receive and trying to change it, sort of like that serenity prayer. Except the lines aren't so clear--just like the angels keep traveling up and down, we have to keep deciding when to fight and when to accept. Not sure if this is making any sense, but your post really brought that discussion back to me.

Third, I just wish I could make it all go away.

--Jessica

Amy M said...

Hi Emilie - Many people have found better words that I can find to write now.

I pray that you'll be guided to making the right decision about your treatment. Regardless of what you decide, many of us will be here to support you.

You've had several tough months and I don't blame you for feeling anything that you've expressed so honestly.

I continue to pray for you. Many, many prayers. May God bless you.

Piccinigirl said...

wow, that was so open and honest and of course caused a lot of tears on this keyboard.

I want to hug you, to let you sit and let you just relax or to cry into my shoulder.

You are a not a Bad mother, wife or person. You are a phenomenal woman who has dark moments in the midst of a very dark time in your life.

as for the other stuff, "please don't go"

enjoy those baths and the week leading up to Christmas, maybe a miracle is on the way. If you stop now, you'll never know; and just know that you're not walking alone.

Hear, hear for the Hat!!!

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