Distraction

My therapist wants me to listen to cd books in the car to distract my brain from unpleasant thoughts. She says that many patients with post traumatic stress and depression find the symptoms to be exacerbated while driving. I guess it's because it's quiet and you have time to be alone with your psyche. It's true for me, at least.

So far, I have heard Angels and Demons as well as The Birth of Venus, which is one of my all time favorite books EVER!

When I go to the library, though, most of the cd titles are books that I've never heard and I have trouble choosing. So, I thought I would start requesting them from other libraries.

I need suggestions. What are your top three favorite books?

All Clear

I got a call from the oncologist. Both the brain and chest MRI came back clear.

More later.

False Alarm

I didn't have an MRI.

Apparently, you aren't supposed to eat for four hours before the test. No one told me.

Also, apparently, my test was scheduled for 1:20, not 12:20, even though the orders clearly say 12:20 and the time is highlighted in yellow marker.

Also, apparently I was signed up for both a brain and chest MRI as well as a brain without a chest MRI.

Here's hoping they get their act together before Monday afternoon, when I am scheduled to go try round two.

A Quick Update

I went to see the oncologist, yesterday. All of my blood work looks great. He was not a fan of my panic and fear of death. He was also not a fan of the non-existant lights that I see flash across my eyes when I'm trying to sleep.

The Tamoxifen which works to block any rogue estrogen from binding to the estrogen receptors has a side effect of blood clots. He put me back on a low dose of aspirin, which we had previously stopped because of bruising. He also said he would like me to get an MRI of the brain, just to be safe.

"Okay, when would you like me to schedule that?" said I.

"You should get it done tomorrow," said he.

"Oh."

So, that's what I'm doing today ... partly because you don't mess around with the brain and partly because I'm a nut-case. And just for good measure, we're doing an MRI of the chest, too.

I do not like MRIs.

I do not like small areas.

I do not like cages to be placed on my head.

I very much like the sedative Ativan, which I will be ingesting in about two hours.

Stay tuned.

365 Days Ago

52 weeks ago, today, I looked like this.

I was at the hospital, getting lines drawn all over me with permanent marker. I was nauseas and terrified and excited and ready to whip cancer's devious, mischievous butt. Remember that day?

As I reflect on the past year, it occurs to me that it is all wholly unfair. I think that I have taken it in stride, sometimes laughing at the absurdity of events such as "nipple failure" and recently crying a fair amount. As the reportable incidents have decreased, it would follow that my recovery would mirror the same curve. Unfortunately, this has proven not to be the case. I still think about cancer every day. I think about it in church, when I am surrounded by fertile families with their sizeable collections of children. I think about it in the make-up aisle of Target, as I search for the perfect shade of lip liner to test out how a tattoo might look. (This is a doctor recommended activity, by the way.) I think about it when my son innocently pats me on the back and it hurts ... because of the scar tissue and missing muscles. I think about it when my daughter wants me to help her ice skate and I am winded, still not in great shape due to frequent napping instead of exercising.

Since my posts from two weeks ago, I have come to terms with the fact that I am not going to get past this on my own. Depression is like that. It creeps up and engulfs you. So, I have enlisted the help of several new health professionals and have joined a cancer support group. I'm sad to come to the realization that it isn't the cellular illness making me sick, anymore. It is the emotional aftermath of trauma.

Post traumatic stress disorder and depression are harder illnesses to quantify and they are less sympathetic illnesses to support. My having cancer was shocking. Everyone felt jolted and wanted to help. I'm not sick anymore, so I should be better. But, I'm not ... and that's kind of embarrassing.

Last week, I was talking to one of the Sisters at work. She said that making it one year was hard, but it was also so wonderful. She told me that I need to focus on the good. I replied: "No. I don't think I do." It was certainly the first time in my 34 years that I have dared to contradict a nun. I agree with her sentiment. Try to be positive. You're still here and you have a wonderful family. True. But, here's the thing: being positive isn't going to prevent me from getting cancer, again. Being positive isn't going to make this all go away. What I need to do is be open and honest with myself.

Cancer is scary ... but I'm not alone.

Below are some comments from other patients who have contacted me. I find it comforting to know that my feelings are par for the course and I thought it might be helpful for all of you non-cancer people to see my world from another perspective.

“I so understand and relate to your fear of recurrence. I see myself in the mirror or shower everyday and there is my daily reminder, no right breast. I have other women ask me why do you think about it; just live. I try to do this but the daily reality is that a part of me is missing. My oncologist started me on anti depresant during treatment and I'm still take it. Does it help? Yes, but the thoughts are still there daily. I have not had a recurrence (thank God) and should just move on but it is difficult."

"I understand your fear and concerns. I have a different type of cancer, but I think that fear of recurrence is the same. That feeling of "when is the other shoe going to drop" has been overwhelming at times. I think that in some ways recurrence fear is a self-protection mechanism, trying to protect yourself from that initial shock of your first diagnosis of cancer (i.e. if you truly move on, is a recurrence diagnosis going to be as devastating as it was the first time around). For me it was hard to reconcile the fact that life was going on, my family and friends were willing to accept that I was "cured" but I carried around this burden of worry."

"I first had breast cancer in 1989 on my left breast, In 2007, I had a mammogram that was questionable, followed by an ultrasound that didn't show anything. Then, I had an MRI, which showed breast cancer again in the left breast. Do I fear recurrence? Absolutely! I am currently on anti-depressants and will continue to be so I can get through the day. . . By the way, my 2007 breast cancer was NOT a recurrence, but a new cancer --after 18 years!"

"I have a good onco doc who is very understanding of my concerns and fears and will see me anytime I need to see him about any concerns. But here is my problem. My mammogram did not find my lump, I did , 2 months after a clear mammogram. So even though I still get a regular mamogam on my remaining breast I have no faith in it at all. I check myself and have regular breast exams. But I guess in the end I feel like it is up to me to somehow know if it has come back since it was not found by the mammogram.”

"I often feel ill when I face an anniversary or landmark related to my breast cancer. I hated ending radiation (who would be like my doctors who watched over me every day?) I feel dizzy every October. ... I remember the day I ended five years of Tamixofen; I searched for just one more so that I could be sure they worked. ... I never wanted this to be my cause. I really hate pink."

I'm glad that I'm not in the operating room, today ... but I wish that I didn't know what it looked like.

Home

After my little freak-out moment at Hallmark on Monday, everything was in a kind of tenuous position. All of my co-workers were suddenly aware that I am an emotional time bomb, unreliable and poised to go off at any moment, at the slightest provocation. Well, guess what?

BOOM!

Again, today, the floodgates were demolished. This time, Byerly's was the culprit. I went in (with my bloodshot eyes disguised behind my sunglasses) and came out with a lot of food ... and my bloodshot eyes disguised behind my sunglasses.

Heather picked me up, and we went to see a movie. Then, I returned home, opened a bottle of wine, and made a meal out of it. (Well, the wine plus a little bit of sushi and two cookies.) Scott came back from Phoenix and hugged my pain away.

Here's what I have discovered: I wish that I was sick. Really. I want to go back to the hospital and again slice off the offending parts of me. Although that period of my life totally sucked, it was also productive. Here's why: we were doing something about the cancer. I have come to the realization that I think that I will die of cancer. I realize that this is not a very politically correct thing to say. I'm supposed to say that I kicked cancer's butt. I'm supposed to say that I am a survivor. But, I don't feel like a survivor. I feel like a person who once had cancer and who is waiting for it to come back. I'd rather it came back right now. I'd rather go to the doctor this month and have him say that my tumor-marker is up. Because then, at least, we would make a plan and start trying to kill this stupid disease. Instead, I'm just sitting here waiting for it to creep back into my world and destroy more parts of my life.

Waiting is hard. I don't want to be someone living with cancer. I want to be someone who beat cancer. I don't hold out much hope that I will get there.

Suck it, cancer.

Five Hundred, Twenty-Five Thousand, Six Hundred Minutes

Well, it's been a year ... almost.

One of my doctors told me to watch out for the one year mark. He said that he has seen countless patients who are coping wonderfully just be broken by that first anniversary. Yesterday, I found out what he meant.

We are hosting a memorial service at work this week. It is for an alum who died of cancer. She graduated four years before I did. When I was little, I used to play in her house. She has two children, a son and a daughter. She had breast cancer, got better, and then got sick again as the cancer spread to her brain.

I am in charge of the event. I have been talking to caterers, liturgists, and valet parkers trying to make tomorrow night's service beautiful for the family.

My anniversary is on Thursday.

I expected that this might be difficult, but I did not expect to to fall apart in the middle of Hallmark, yesterday. I guess that I should have asked someone else to go buy the guestbook for the woman who died of cancer. I also did not expect to have a hyperventilating, gasping for breath, face tingling, weak limbs breakdown after I left the store. I'm having a tough week.

I keep having flashbacks to the phone call I took while collapsed on my office floor. I remember throwing pens over my cubicle wall to get Gina's attention as my doctor's voice on the other end of the line became blurry and incomprehensible. I remember Renee coming over with wine and a bottle of margaritas, because she was unsure what to give to a friend who was just diagnosed with cancer. I remember drinking most of that bottle on my own ... and it still not being enough alcohol to lull me to sleep. I remember that Scott was out of town and I he had to take a red-eye flight home because his wife was too sick for him to stay. I remember the horror of the office visit that next morning, hearing words like: mastectomy, chemotherapy and hysterectomy. In the following weeks, I remember my mother's birthday being an unusually somber occasion. I remember Scott needing an excel spreadsheet to keep track of all of my medications. I remember friends coming to visit me in my pajamas. I remember Heather flying in from New York to my bedside. I remember Scott's mother taking care of me, because I couldn't do anything by myself. I remember my children staying with my parents, each lucky to have the other.

I remember too much.

This morning, I was listening to the song Seasons of Love, from Rent. If you've never heard it, I urge you to click here. It's beautiful. Here are some of my favorite lyrics, which brought me to my knees as I listened today.

Five hundred twenty-five thousand

Six hundred minutes,

Five hundred twenty-five thousand

Moments so dear.

Five hundred twenty-five thousand

Six hundred minutes

How do you measure, measure a year?

In daylights, in sunsets, in midnights

In cups of coffee

In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand

Six hundred minutes

How do you measure

A year in the life?

How about love? Measure in love.

It's time now to sing out,

Tho' the story never ends

Let's celebrate

Remember a year in the life of friends

Remember the love!

Seasons of love!

Oh you got to, you got to

Remember the love!

You know that love is a gift from up above.

Share love, give love, spread love.

Measure measure your life in love.

You have walked this journey with me. You held me up when I couldn't go on alone. You shared in the laughter that sometimes seemed the only way to make it through the pain. This has been a horrible year: I was sick; I suffered through many surgeries and heartache; I am covered in scars; I have lost sensation in a significant part of my body and the ability to bear children; Scott and I watched our babies deal with confusion and mourning that should be way beyond their youthful years. It was rotten.

But, I am here. I am blessed and I am loved. I have three doctors appointments in the coming weeks and there is little reason not to believe that I will hear good news at all of them. (Although I think I will always find my good health to be suspicious. A 13% chance of recurrence doesn't feel so little to me.) While I remain painfully aware of what happened last February, there is a lot of good in my life, especially if I measure my life in love.

And if I look at it that way, my life is already very LONG.