Cultivating an Intolerance for Petty Crap

So, I almost got to bed at a decent hour. Again I found myself Googling the various scans and tests I have had in an effort to better understand all that I have been through. This is becoming an unhealthy past time. I now find myself curious about other cancers. It is like packing on mental weight. The other night I had a dream that I felt a lump next to my belly button and my regular docs wouldn't see me. So in a panic, I went to my dermatologist, who stuck a swab into my abdomen and declared that I have lymphoma. Even though I was well aware at this point that I was dreaming, I was so mortified by the idea that I could get a completely different kind of cancer out of nowhere that I woke myself up crying.

My mom is having random conversations with people at the health food store about my cancer. She goes in to buy aluminum-free deodorant for my radiation treatments, and comes home with green phyto-foods to help cleans my body of radiation toxins and such. I am grateful for all that I am learning, but with each new thing I learn, I am made more aware of what I probably don't know. In addition to my oncologists, I also see a naturopath doc. I never speak of this much because initially, I wasn't sure how much credit to give this guy, but little light bulbs are going off and he now makes complete sense to me.

I passed the 6 month mark a few days ago. Is it bad that I had a little party in my head about this anniversary? I think about what these last months have included, how I've passed the weeks, and what events make up my hours, and it really all seems very boring. It feels so lame to say that I would rather sit at home with my cat and surf the net than have martinis with my friends like I used to.

Yes, it feels lame to declare, but I would honestly rather sit at home in silence than listen to one of my friends complain about some petty crap. Some moments I am grateful to be included in conversations about drama that will not matter in a month, and when the drama is flung my way, I feel a bit normal again. I am both angered and relieved that my friends still treat me the same. I am relieved that I am not that chick with cancer, but angry that they have no concept of what it feels like to turn into someone unrecognizable to your former self.

I used to care tremendously about my friendships, even though some of them probably weren't healthy. Somewhere in all of this, I lost the mental attachment to my social surroundings. A friend pulled me out of my funk and took me to my favorite restaurant last night. I ended up running into about 30 of my friends who were celebrating a birthday. As I was talking to my friend, people from the birthday would approach me one at a time and awkwardly inquire as to how "things" are going. "Things" are great I said. That is the kind of generic reply you give to people who you don't really know.... a proper answer given that I feel like a stranger in my group of friends. When I got home, I was so glad to be back on my couch with my cat. I feel kind of bad that my friends have been replaced by my cat. Oh well! My cat never complains about petty crap :)

Chemo brain... how I loathe thee....

For some survivors who have had chemo, we know it is real. I know it is real. I can read pages in books and suddenly find myself staring at the whitespace in the margins. Where did my concentration go and what did I just read?? I can have a whole conversation with a person and walk away knowing I got information, but shortly after, I can only remember vaguely what that information is. It feels as if I can't locate information in my brain. Luckily, my onco didn't discount my complaints and prescribed Provigil for me.... but somedays, not even that is enough.

I am increasingly frustrated that this side effect was never mentioned to me. I had to read about it in some pamphlets that were thrown my way. It seems that the medical community is starting to take it seriously since so many people complain of cognitive impairment. The new research shows that chemo may change your brain. Good to know.

Below is part of an article I found on symptoms and new research on chemo-related cognitive impairment. Read entire article here.

Recognizing the Condition

“It’s a definite medical condition,” says Dr. Christina Meyers, PhD, ABPP, professor of neuropsychology in the Department of Neuro-Oncology at M. D. Anderson Cancer Center in Houston, describing what has come to be known as “chemo brain,” a lesser-known side effect of chemotherapy, which can be just as serious as nausea, fatigue, and hair loss. Thankfully, the condition—marked by a reduction in verbal or visual memory, problems with attention and concentration, a reduction in the speed of processing information, and visual or spatial abnormalities—is the subject of several recent studies, as researchers seek clues to the cause and the cure of this foggy mental condition.

Doctors used to think that impaired cognitive ability was related to other side effects of chemotherapy. Anemia, fatigue, depression, and hormonal shifts can all cause memory lapses and concentration difficulties. But treating these conditions didn’t solve the problem for many patients. And assessing the severity was difficult because there was no baseline data of mental function before chemotherapy.

Several types of cognitive impairment that fall under the “chemo brain” label:

Reduced memory capability, both verbal and visual (“What’s your name again?”)
Lack of focused attention or ability to process information (must read a paragraph several times to get the meaning)
Learning new things takes longer (even though you’re still as smart as before)
Multitasking is overwhelming (can’t talk on the phone and cook dinner at the same time)
Easily distracted (“Why did I come in this room?”)
Missing key points in discussion (“Please repeat what you just said”)
Inability to find right word in conversations (You can’t just say “duh”)
More effort required for usual tasks (daily activities leave you very fatigued)

Help from the Pharmacy

At this point no drugs have proved successful for combating the effects of brain tissue damage. A small study conducted by Sadhna Kohli, research assistant professor at University of Rochester, showed improvement in memory, concentration, and learning for people taking Provigil® (modafinil), a drug that stimulates the brain only as required and lasts about 12 hours. Unlike Ritalin® (methylphenidate), which some patients have tried, Provigil is nonaddictive.

It’s also important that doctors assess and treat possible contributing factors such as thyroid dysfunction, hormonal imbalance, or anemia. As researchers come to better understand the mechanisms of chemo brain, genetic factors may play a larger part in treatment plans.

Uh, I'm getting high blood pressure

Ugh. Since my diagnosis, I have tried to remain positive, and for the most part I have. Sure, I cried a ton in the beginning and I would wake up every morning and say, "Shit, this is still my life." As soon as I started chemo and I knew my treatment plan, I started to feel like I had some sort of control over what was happening to me. Well, I finished chemo and went in for a follow-up and to plan for radiation today, and I pretty much lost it in my oncologist's office.

I had a ton of questions about follow-up care and how to make sure I can catch a recurrence early, blah, blah, blah.... and my oncologist didn't phrase his answers like I needed to hear them and then he gave me too much statistical information. When he said the words "metastatic breast cancer" I started tuning him out and then I looked at him and said "I am going to cry now." And that was it...

Major waterworks in his office, major waterworks in the blood draw room. I cried while I was in the CT machine. The crying continued while I was getting my Herceptin infusion and all the 70-year-olds looked at me like what I was doing in public was unacceptable. I seriously couldn't help it. Today was just one of those days... if my brain wasn't occupied with a conversation, I was thinking horrific shit.

Beat down. I am emotionally beat down. I am 6 months into this thing and my oncologist reminded me that I have only just begun. He was just full of warm fuzzy words for me.

Get a Life!

“So here’s what I wanted to tell you today: Get a life. A real life, not a manic pursuit of the next promotion, the bigger paycheck, the larger house. Do you think you’d care so very much about those things if you blew an aneurysm one afternoon, or found a lump in your breast?

Get a life in which you are not alone. Find people you love, and who love you. And remember that love is not leisure, it is work. Get a life in which you are generous. And realize that life is the best thing ever, and that you have no business taking it for granted. Care so deeply about its goodness that you want to spread it around.” ~Anna Quindlen

I’ve had a lot of time to reflect on my life over that past few months. I’ve had moments of extreme sadness and extreme joy. I’ve had moments of disbelief and moments that capture the essence of what it means to truly live. I’ve had experiences so visceral that nothing could possibly remind me that I am alive more than during that moment.

At the end of my second chemo treatment, when I thought I was in the depths of hell and nothing but time could heal my hurt, I was sitting on my acupuncturist’s table and I had a moment of clarity and possibly surrender. As needles were sticking out of my body, I felt myself sink into the table. I was totally relaxed and at peace. As I concentrated on my breathing and how my body felt, tears started to stream down my face. It was only then that I realized the magnitude of what it feels like to have your body run amuck and you have no control over it. I have been making so many decisions that could really determine whether I will live or die. And I got so angry. I don’t want to make these decisions. At that moment, I found comfort in the fact that it would be so easy to just not make any decisions at all. I mean, what if I just decided not to do anything anymore? What a relief it would be to hand my life over to someone or something else. As I searched my mind for a way to completely surrender, my acupuncturist came in and handed me a kleenex. She started to remove the needles and I said, “Sometimes being alone with only silence and your thoughts is the hardest.” I got off the table and suddenly, I felt reborn. My pain was gone.

Maybe it was the acupuncture, or maybe it was my moment of realization, but after I left that day, I decided that making decisions is the best part of life. Sure, it would be easier to give up control, but I have never been one for the easy route. I may not have control over my body, but I do have control over my mind.

It sounds cliche to say that hearing that you have a disease that could kill you can transform your life, but it’s true. Nothing has ever been more true than that I think. Nothing can ever make you re-evalute your priorities more than realizing that you don’t have forever. It’s funny now to think that I once thought that I did. Here are my priorities:

1. Heal my body. 2. Nurture relationships that foster positive growth. 3. Tell my friends and family that I love them every day. 4. Appreciate life’s little pleasures. 5. Finish my education so I can live for something bigger than myself.

Thanks for reading.

“And think of life as a terminal illness, because if you do, you will live it with joy and passion as it ought to be lived.”

My Story

You have cancer. This is the first day of the rest of your life.

To sum up my crapness (a word coined by Matthew Z of I'm Too Young For This!) , I was diagnosed with breast cancer on June 2, 2008. A day I can say I will never forget. I'll probably remember that date long after I forget any anniversaries or birthdays I have drilled into my brain.

I was happily living my life as a project assistant and a master's student when I got the news. After I got the news, everything changed. It's hard to explain unless you have been there. So I won't try. Instead, I'll just outline my pathology report so you have an idea of what I was looking forward to.

My Pathology Report (Or cancer lingo)

Tumor size: 1.8 cm. Lymph node: Negative. It means that while the tumor was relatively large, no cancer cells were present in my lymph system and it hasn't metastasized to any other organ. This classifies me as Stage 1.

Grade 3 - Poorly Differentiated Cells: This is a measure of aggressiveness. Mine is the most aggressive.

ER+/PR+: Part of the triple positive. My cancer is estrogen sensitive and progesterone sensitive. My cancer is fueled in part by my hormones.

HER2 Neu+: Another part of the triple positive. Also a measure of the aggressiveness. My cancer has HER2 Neu receptors on the outside of the cells. Initially, this is a bad thing, but we know so much about breast cancer now that this translates into one more way to fight my cancer.

BRCA1 and BRCA2 negative! Whew, this is a biggie. It is the Mercedes of genetic tests. Basically, my cancer is not hereditary. According to my doc, I pretty much got the short end of the cancer stick... a complete fluke.

My Treatment

Initially, hearing all the positive test results seemed like a downer. Really though, the more positive things you have, the more ways they can treat your cancer. For example: There are 5 ways to treat breast cancer... and I can use all 5 ways.

Surgical treatment: This is either a lumpectomy (which I had) or a mastectomy. Removing the tumor with good margins. That means that the tissue around the tumor that they removed shows no presence of mutated cancer cells. My margins were clean, so they got all the cancer cells.

Systematic treatment: Chemotherapy. I am using two drugs: Taxotere and Carboplatin. I get these drugs one time every three weeks for 6 treatments. I have had one and my second treatment is next Thursday. Yuck. I've been pretty lucky I must say. No nausea, but man, for a few days I feel like I have literally had my ass kicked. Only 5 more to go!

Local treatment: Radiation. I will start radiation 5 days a week for 7 weeks as soon as my chemo is done October 30.

Hormone treatment: Since my cancer is partially fueled by hormones, the doctors can suppress my estrogen using Zoladex and Tamoxifen. Yes, temporary menopause sounds like a real treat. lol. I'll start this treatment after my chemo is over. And I will continue it for 3-5 years.

Biological Therapy: This can only be used if the cancer is HER2 Neu+, and mine is positive. Herceptin is an antibody that I get an infusion of every Thursday for the next year. This antibody targets all cells that have HER2 Neu receptors and it attaches to them and takes them out of my body. I have felt no side effects from this. This is a badass medical discovery.

So, this seems like a ton of treatment for stage 1 breast cancer. Old school thinking was that if you got it all surgically, no more treatment was needed. Not any more. They throw everything and the kitchen sink at it in an effort to treat breast cancer aggressively while it is contained in one place. In other words, I am kicking its ass!

Chemo Round 1

7/17/2008 -The morning of my first treatment, Marcella picked me up for breakfast. We ate and made no mention of what was to come. Jenn arrived at my cancer treatment center with Starbucks Green Tea in hand and a tear in her eye. I said, “There is no crying in cancer!” Yeah, I make uncomfortable jokes when I am uncomfortable. She laughed and blamed it on a Carrie Underwood song on the radio.

We checked in at the front desk and were directed to the Infusion Room… oh the infusion room… the one I had toured the previous week in preparation for this day. The one in which I saw an endless row of green dentist chairs filled with people who looked as if they were clinging to life. I blocked out that thought.

Marcella, Jenn and I settled into a chair area in the corner. Even though I was nervous, I was reassured by my girls in my chemo posse. My chemo nurse, Melissa, came by to connect a needle to my port and flush it with saline. An aroma puff of what can only be described as lemon-lime skunk drifted into my mouth cavity. As I got an unpleasant confused look on my face, Melissa said, “Oh you are one of the lucky ones… you can taste it.” Amazing that she was pumping something into my heart, but I could taste it in my mouth. Melissa started my premeds, which included a rather large dose of Benadryl. I began to slur my words, but my anxiety was gone.

Jenn started making conversation about upcoming social events. In particular, a huge 30th birthday party for an old friend. She asked me if I was planning to go, and I replied, “I’m not making plans these days. I’m living it day to day. Get cancer, get a new perspective.” Out of the corner of my eye, I saw a frail woman who was reading a book nod her head in agreement. Stage 4 cancer… this woman has had stage 4 cancer two times. Now THAT was a dose of perspective. She asked me what kind of cancer I had. When I replied breast cancer, she said, “Oh, you’ll be fine. They know so much about that these days.” And that was that. Reassurance from someone who is living on the edge and trying not to fall off.

As the chemo bags were hung on the IV stand, they were pumped into me one by one. My mom came to keep me company as Jenn and Marcella had to get to class and work. The whole thing took about 5 hours. They were the shortest 5 hours of my life. As I was leaving, a seemingly healthy 40-something man came in and sat a few chairs down from me. Seconds later, his wife was running with a vomit bag. Yuck. I wondered if that was in store for me. All I could do was wait and pray that my body didn’t punish me too harshly for poisoning it. Melissa flushed my port with saline and Heparin and stuck a Snoopy band-aid on my chest.

Round one down, five more to go.

The Hardest Thing to Say

......I have cancer.

Disbelief. Anger. Dying. Nausea. Helplessness. I can’t get enough air. All feelings you experience when the doctor tells you that they found cancer cells in your breast.

That was my life at 6 p.m. Monday June 2. Only four short days from my 28th birthday. In the few days since I got the news, I can’t even count how many times I have cried. Even though the cancer has been removed from my body, I am forever a different person. I don’t even know what to do to feel normal. I’m still paranoid that something destructive is living in my body. I guess I am just going to go back to work and wait. Wait for the lab results to tell me the “personality” of my cancer.

I already know that it didn’t hit my lymph nodes, which is great news. I am officially classified as Stage 1. Tomorrow I see the oncologist for the first time. He will set up my 7 weeks of radiation 5 times a week, and also let me know whether he thinks I will need chemo. Damn I’d miss this gorgeous hair.

To keep myself sane, I am just going to focus on the positive. I saved myself. I saved myself by doing self breast exams and noticing when something wasn't normal for me. Liz saved me by relentlessly encouraging me to get into the doctor even though I was afraid. And when my gynecologist assured me that it was nothing to be worried about, I didn’t give up. I trusted my body and I knew something was wrong. I sought the help of a breast cancer surgeon, the same surgeon who held my hand as I cried in the hospital bed. Even though I was surrounded by people, in that moment I felt so alone.

Today seems brighter though. I can’t wait to let go of this helpless feeling, start my treatment, and start to take control of my life again. Nothing like the feeling of death to make you want to live. I have so much I want to do with my life and each day that goes by now feels like a blessing.

Live every day with a sense of purpose. Don’t put it off. And never forget to feel your boobies. Even though you think it can’t happen to you, it can. I’ll never forget shaving my legs in the tub the minutes before I found the lump that changed my life.