and in other news...

Today, I celebrated my 9th anniversary by myself. My sweets texted me from Rome, Georgia, shortly after dropping off a disassembled basketball court and picking up a load of steel going somewhere in Kansas. Belatedly, I realized after a Facebook post or two that I had neglected to tell certain key family, friemly (friends that are family), and friends that D took a job as a flat bed trucker.

D's truck -- Sunset Tennessee

At this point in a discussion about D taking a trucking job, there's usually the unheard screech of a record player. People who have known us for awhile have said about the same thing.

• What, why? I can't afford my healthcare on my salary alone. We need the income to cover the difference.
• What about the dogs? We don't need an entire salary to pay for the difference. I can check the dogs into doggy spa for the days I'm gone for work, and I'm not traveling as much due to lymphedema.

• Long haul? Yes. You have to do it for awhile to get into the industry.
• For how long? I don't know. Until we can figure something else out.
• Will he like it? It's been a secret plot of his for years...so we will see...
• You're going to miss him. Yes. Yes. I am/I do.

D and Daisy, 2007 or 2008

D loves me. I mean loves me. He "like really" loves me. I honestly don't know how I lucked into this marriage. A die-hard jump-before-you-look type of person, D and I fell in love fast one summer and married a sunny fall day in a last minute ceremony 7 months before the "C," as my sweet friend from the pool calls it. This chance choice seemed so certain at the time.

D at Waldo lake

D has held my hair back as I vomited. He has cleaned up vomit, blood, and every body fluid you can imagine. He has cradled me as I cried uncontrollable tears. He has done the bills, the dishes, the dog chores, the cooking, the cleaning, and every other chore imaginable while I lay huddled sick, tired, and out of it in the other room. I'm a lucky one. Lots of spouses leave relationships scared away by "C," mounting medical bills, and the specter of their loved one consumed by themselves.

D has been my calm, my rock, through all of this. I don't think I've thanked him enough. Almost all couples squabble, shout, and snipe. I think we all secretly want to be those perfect sitcom couples, and we just aren't. D and I definitely are not. I guess that's what makes it work though.

One of his friends told us a joke about a husband and wife. The punch line was one says to the other, "Honey, I know I love you a lot, because when I want to choke you, I don't." L iving with someone is hard. Making decisions based on two perspectives and two futures is hard. At the end of day, it's love and a shared vision of a future that binds one to another. Those two things make sacrifice worth it.

D's started and stopped school four times for various reasons. Two of those times happened because of the "C." To him, it doesn't matter. I matter most. I don't know how this happened, but I am grateful; grateful that I know him, that he loves me, and that we can sort through life's messiness together.

Happy 9th, my darling, here's to many more.

The three week rule and new shoes

I found a lump in my breast in February of 2004. I lay in my bed, cuddled up with my hound, listening to the rain drum on the farm house roof.  I noted that it was there, and as is my habit, I instituted the "three week rule."  The "three week rule" had been cooked up my first year in college to deal with my growing hypochondria that was fed by an insatiable need to look up symptoms on Web M.D.

The rule is quite simple. Unless I am bleeding, fainting or in other way need immediate medical attention, I wait three weeks. If whatever I am worried about is gone, I've most likely forgotten that I instituted the three week rule. If it's still there, I call the doctor. I use the three week rule a lot. A two-cancers survivor, it's easy for twinges and twangs to turn into metastases in my head. The three work rule saves me a good bit of worry.

When the three weeks elapsed, I was left with a bump protruding from my right breast and a thought nagging me to go in. College is college. I worked part time, went to school full time, and I had been, with a partner, nominated to travel to present our project at a conference in Florida. Three weeks turned into a month. A month turned into two.

When I finally managed to get myself to the health clinic, at my sweetheart's urging, it didn't take long for the nurse to decide I needed referred for more testing. This was done hesitantly with discussion with a doctor and after I had told her of the "three week rule."

After leaving the clinic, I sat in the spring-filled courtyard, and I watched the campus children's center send bubbles flying in mass up into the clear blue sky. In a moment of clarity, I realized they were looking for cancer. The one time I hadn't let my hypochondria get the best of me, they were worried about cancer.  Tears started building at the back of my eyes, my breath stilled, and my throat ached. All I could think about was bubbles and children and children and bubbles.
One of my professors found me, sitting outside, staring at sky, not crying. I don't remember telling her what was happening, but I do remember saying "they're looking for cancer." I do remember her telling me she had breast cancer. I remember her telling me that waiting was the hardest part. At some point, the tears that had been growing spilled out of me, the opposite of bubbles: weighted liquid streamed down my chest. Gravity pulled my sorrow out of me.

My professor held me. She might have been 100 pounds dripping wet. She might have been 5 inches shorter than me, if I was being generous. She didn't try to tell me it would be alright. She didn't try to make it better. She just held me and gave me a space to be with my grief. After awhile, she looked at me and told me a story.

When she was diagnosed, she was diagnosed with stage IV disease, her child was young, and the doctor's weren't expecting her to live long. I think they had given her a month. One day she was shopping somewhere; I can't remember if it was the mall or downtown, but it's not really important. She saw $100 pair of shoes that she wanted. They were cute. She needed shoes. Hers were worn out. She looked at the shoes and thought, "I really don't need those shoes. I'm not going to be here long enough to enjoy them." She looked at the shoes again, and then said out loud to herself, "E, just buy the DAMN shoes."

She looked at me and said, "sometimes, you do things, because you need to." I wasn't really sure what she meant by that. I'm still not. This story has meant different things to me over the years. When I found out she had died, I took comfort in this story, because it was something she had given me that I had kept close. When I was diagnosed the second time, it kept me from turning into a hermit and only spending money on medical bills, and now, it means something different.

Each time, I remember it, I remember her. Each time I remember it, I need a different part of the story. Sometimes, I do things, because I need to. Sometimes, I do things, because I want to, and sometimes, I need to give my grief space to spill out of me so that I can move on and have laughter spring from me, bubbles floating up and away on a cool spring afternoon.

Scares, Risks, Benefits, choices, consequences: Awareness Month-- Part 2

After the first cancer, I moved to Oregon and got a grown up job. At some point, I ended up with extreme pain in my legs and back. I couldn't walk; I couldn't carry things; I couldn't swim; I couldn't eliptical. The doctors, skeptical, referred me to amazing specialists up on OHSU. Eventually, they diagnosed me with a hip impaction, which resolved after a year of physical therapy.

To get there, they injected my joints with something radioactive and took pictures of my right hip. As other survivors will know, I got "the call" from my primary care doctor. "The call," for the uninitiated is what happens when the doctors are worried. The doctor has decided that whatever it is that they are looking at can't wait until your next regularly scheduled appointment.

You may know you were being tested and be expecting a call, or you may get the sneaker "call"  after a run of the mill, not-looking-for-cancer test: "Amanda, I got the report from the imaging, and there is something we need to check out. It looks like your uterine lining is too thick."

In the exam and biopsy, my doctor casually dropped, "It's sad when the medicines they give you for one cancer could give you another one." There I lay, neck craned, peering at her through my styrup held legs, shocked.

At the 21, when I decided my course of treatment, I knew the risks. I had been told you have x in a huge number chance of lymphoma, x in a huge chance of luekemia, x in a 1000 chance of endometrial. The risks seemed reasonable compared to a 1 in 2 chance* of my cancer killing me with treatment. *This was a number I found on a reputable, vetted website. The doctors never confirmed nor denied it. They tended to redirect all attempts at discussing it. So who knows if it is actually true.

Anyhow, I left the probing (painful), I went to our basement apartment, I crawled into the shower, I sobbed, and I chanted, "not that, not that, I can have babies without breasts, but not without that." Pity party complete, I looked at my date book and saw that I had an oncology check in a few days away. So I waited, vacillating between stoicism and premature grief.

The biopsy was negative. I got the call on Thursday. In my oncology appointment that Friday, I sat with my doctor, and he and I discussed the scare. I asked him, if I should go off the drugs. He soothed my worries and explained that the drug I was on didn't cause the cancer, it just created a space for it, if it was going to happen.

"It would be short-sighted to stop the drug now," he said, "The breast cancer is more of a risk, at this point." I breathed a breath in, and I heard what I needed to. I took the full course of the drugs.

6 months after I had completed the treatment two or three years later, my husband rushed me to the hospital at 5:00 a.m. I was again, sobbing. This time, I sobbed from a deep grinding agnoy writhing in my belly. In the hospital, once again in the styrups, looking at yet another doctor through my legs, I watched as he peered into my vagina. "It looks like a clot," he said, as he took a shiny, slick pair of tweezers and pulled on what I imagined a small thread of clotted blood.

His eyebrows went up, a metallic smell rushed into the room, and my back, my legs, his face were wet, warm, and glistening with blood. "It's like Mount Vesuvius down here." The pain went away. Off the doctor went, in came the imaging person. She looked at the ultrasound as I told her about the first scare, and she said, "Well they'll have to do something now."

They did do something, and I did get "the call again." This time, in person, my sweet OBGYN that I met and knew for the first time in the hospital before my D and C, told me "It's cancer." "Well that's peachy" was all I could say. The crying happened later.

With cancer treatment, it's all about risk and reward. The drugs they give you, the surgery they use, the radiation they beam, is all directed at eliminating the cells. Damn the consequences. It's done this way, because we don't know any other way to do it. At the end though, you, the patient, are left holding the bag: a long list of chronic health conditions that almost all have no effective or known treatment.

Was it worth it? I don't know. There's a chance that my cancer wouldn't have come back without the long treatment. There's a chance it would have just stopped with surgery and radiation. In the room, with the first oncologist, 8 years ago, when he said, "the pathologist watched the cancer cells highjacking blood cells. It's most likely already spread outside the breast," the risks and rewards seemed clear. Today? Most of the time, I still think I made the right choice.

P.S. Prevention information on endometrial cancer. http://www.bbc.co.uk/news/health-24035559. Side note: the drug I was on is also a known risk factor....

Awareness month -- Part 1

Awareness month part one arrived last week right in the middle of birthday alley. (My family has six birthdays squished together within two weeks.) I had meant to post last week about it to kick it off, but I was distracted...by a baby. A week isn't too late? I didn't miss too much awareness did I?

As a two cancer survivor, I have the unfortunate honor of having two whole awareness months that I get to be "aware" of. October, the month of pink, is a familiar season to most people. Pink has wedged itself into the orange, black, purple, green, and silver of Halloween beckoning people to fund research to cure cancer and help women (and men). It offers people a small way to turn the tide against a cancer that will affect one in eight women. Most everyone knows a survivor. I have a love hate relationship with Pink, but that is another conversation. This is about my other color. The color that I earned two years ago: not pink, peach.

September cancer awareness is for all three of the major gynecological cancers: ovarian, cervical, and uterine/endometrial.  Ovarian: teal; cervical: teal and white; and endometrial: peach. There's no season for this side of me. Unless you have been impacted directly by one of these parts of your or a loved one's body trying to kill itself and its host, it is unlikely you would know about them. I want to to change that.

Women die every day from ovarian, cervical, and endometrial cancers. Kids lose their moms, partners lose their spouses, and parents lose their kids all of the time, and we don't talk about these cancers. I'm not really sure why. It may be because they are more rare, or it may be because to discuss them, you have to say words like "vagina," "cervix," "ovary," "rectum," "urethra," etc. It may be that we don't talk about them, because these cancers strike at so much of what modern womanhood is. We are supposed to be mothers and sex goddesses right? How can you do that with half a vagina and no ovaries?

I don't know why we don't talk about them, but I want to.  I'm sick of having friends die from these diseases, and this will not change until we have an active and honest discussion about Pink's siblings. Teal, Teal-white, and Peach.

So this month, before the pink, remember there are other colors of ribbons out there, and please remember to know the symptoms of each and get your annual check ups. If you've got a sweetheart, keep on her to get her annual and go to the doctor if anything weird pops up and doesn't go away.

Do not live in fear, but with awareness. Early dectection is key to increasing and improving survival.

Below are links to symptoms. If you are a hypochondriac, do not read them. Actually you probably already have; so never mind. Try not to fixate on them?

• Ovarian cancer symptoms
• Cervical cancer symptoms
•  Endometrial cancer symptoms

Please share! Let's paint the town teal, white, and peach.

Connections -- She's here...she's here...she's here

This week, my niece screamed into the world. Two perfect hands, two perfect feet, two perfect eyes. My brother and sister in law worked hard to bring her here, but she seems mostly unimpressed and content to sleep and eat and sleep eat. 

We flew home, and I have spent some time holding her, counting her toes, watching her chest rise and fall, and smiling at odd moments thinking about her. Thursday, we gathered at some of my best friends' home. A large extended urban family bound by blood and choice and waited. My two young god daughters so excited to welcome Ducky into the clan. 

In between laughs, stories, sips of liquids, adult and otherwise, I hung with my two girls. The oldest, Rose, snuggled next to me, I reveled in the connection of love built pat by pat, song by song, diaper by diaper, when I cared for a "Ducky-sized" baby Roselet. Her sister, I know less well, a year is an eternity of time when you're almost 6, but I love just as much.  

In a quiet moment, when her sister was off busy, Sunshine, asked me, "Do you love me, as much as you love Rose?" I said, "Yes, I love you both with all my heart." A breath, two. "Do you love me and Rose as much as you love Ducky?" "Yes, with all my heart."

It's a crazy thing, but when Rose was born, I didn't know I would love her with all my heart. I didn't know I needed her. She came into my life, just when I needed unconditional baby love and trust the most. Rose settled into my heart and made room for herself. When Sunshine came along, she settled in too. Before Ducky was even here, I could feel my heart expanding in my chest. That hollow feeling of first love  settled  next to the place that is just for Sunshine and Rose.  

Babies know only to trust and love.  Because this is all they know, with most people, they get love and trust back.  They have limited skills, but all the capacity in the world to become anything. I hope that these girls become something: astronauts, presidents, chemists, CEOs, whatever they want to become. First and foremost though, I hope they always stay agents of love.  

Perspective

When dealing with problems outside of one's control, people often recommend to take perspective. Think about the starving child in a third world country; think about the mother who just lost a child to a mortar attack; think about the father who can't put food on the table. Think about all the ways that you are blessed and be at peace. There are people in this world struggling with obstacles and trauma that you cannot imagine. You are not one of them, and so get over yourself; move on.

I've tried this. When the pain is raw and throbbing in my chest over something like "I can't have children," "I'm persona non grata to the adoption industry," et cetra, I remind myself that these issues are not as significant as others are facing today, but part of me always hesitates. I feel like I'm saying, "At least, I'm not that guy," which makes me feel worse.

I am blessed. I have a home. I have food in my fridge. I have money in the bank. I have a job. I have a college education. I have a loving partner and supportive family and friends. I have health insurance. All of these things are true, but I am still sore. What right do I have to be in pain, when there are those in the world suffering more greatly than I?

"A nation's greatness is measured by how it treats its weakest members." 

~ Mahatma Ghandi

We are at a point in history where we must not think of nations. Our world is too small. All of those people I listed above, they are my family. When I think on their experiences, it stabs me in my gut. It is not pity, but a deep, dividing wound that settles in my soul past where cancer ever struck. In this week of bombings in Iraq and Lebanon, shelling of chemicals in Syria, protesting in Egypt, the world spun on, and if I think about all of us, a larger grief settles around me...a grief for all my brothers and sisters.

I think I focus on my problems, because I can. If I open myself up to the world's pain, I am not a big enough vessel to carry it. If everyone's my brother and sister, then all their pain is my pain.

Earth from Mars. Credit: Nasa.

It's like I'm trying to think about the universe, the vastness of space, the millions of galaxies spinning around in all directions, and my brain is too small to hold it all in. So I look at my garden and I appreciate its beauty and its savagery. I can see that and know it. 

My grief is the same way. If I think about the world too long, my heart becomes full of sorrow, and I cannot hold it all, but I can't afford to become paralyzed by it.

I can know it is there and choose to act. I can't solve the world's problems, but I can do something.  If I can heal myself, I can go out and do a little. If we all did a little, we could move mountains. Can something so trite be still so true?

One day an old man was walking down the beach just before dawn.  In the distance he saw a young man picking up stranded starfish and throwing them back into the sea.  As the old man approached the young man, he asked, "Why do you spend so much energy doing what seems to be a waste of time?"  The young man explained that the stranded starfish would die if left in the morning sun.  The old man exclaimed, "But there must be thousands of starfish.  How can your efforts make any difference?"  The young man looked down at the starfish in his hand and as he threw it to safety in the sea, he said," It makes a difference to this one!" 

https://www.facebook.com/StarfishCatAndKittenRescue

Why I am trying this whole blog thing...

There are two things that I know. One, I had cancer. Two, I will never escape it. I may have survived, but I will spend the rest of my life paying for something I didn't do to myself.  I am starting to blog, because frankly, I don't see me reflected in the general cancer narrative.

I don't fit the "happy go lucky go climb a mountain" survivor mold, and I am definitely not carved from the "I had cancer so what" block. I am just me, a two time cancer patient who lacks patience. My story is not a unique one. It's not a special one. It's just my story, and I hope by opening up about it, I can help other people seize their own narrative. Because chances are good, I am not the only one lost between the aforementioned two poles.

When I was first diagnosed, I wish someone, maybe future me, would have shown up and said,

• Here's the real deal...cancer sucks...you really have no control over whether you will make it or not.
• The doctors won't ever be able to tell you, "it's gone." If they do, they are either hopeless optimists, or they whisper in their heads "for now..." 
• You will watch some of your friends die and some of them live, at random.
• People will tell you that you are an inspiration, and you will struggle with what to say. Part of you knows that they mean it as a compliment, and part of you may rebel at thought. They, after all, don't see you at 2 am in the morning in a sob fest...that's a rite only for the dearly beloved inner circle to witness.
• People will expect you to be positive when you are not. When you are having a bleak day, they will genuinely tell you to stay positive, and they will mean it in the best way possible. So you'll either be an inspiration or a downer, you get to pick.
• You won't ever truly out live the shadow of this diagnosis, and if you think you have, chances are good, you've just forgotten it is there. 
• This place you are going is where hope and fear live, breathing the same breath, living the same life, day in and day out.

When I was diagnosed the first time, I was 21. I had been married for 7 months or so. I almost had completed college, and I was ready to move on and move out. I found a lump in my breast, and that lump of "I'm sure it is nothing," turned into, "I'm sorry, miss, it is something." Fast forward six years, I was rushed to the emergency room hemorrhaging and sobbing in pain, and this time no one said "it's probably nothing." They were right.

So I'm 30, I made it out of twenties. I'm here, which I should be grateful for, and I have an awesome sweetheart, which I am grateful for. I have two dogs who think I am the moon and the sun, and I have an extended network of family and friends who treasure me.

I am, however, alone in many ways. I am alone when I add up my health insurance costs and realize I'm taking a 6% pay cut. I am alone when I look at the bill for a machine that would make it so I can keep working. I am alone when I look at the scars of my treatment: the two that streak across my chest, the one underneath my armpit, the vertical one above my belly, the constellation of dots left by tubes and robotic arms. I am alone every time I cut or burn myself and do not feel it. I am alone every time I fall, because I cannot feel my feet. I am alone every time I force myself to go swimming in the sleeting rain in a vain attempt to keep my lymphedema under control.

There's a divide between me and everyone else. A path that separates me from everyone else. I can see it, and they cannot usually, unless they say something casual like "you won't say that when your 40," and I reply, "I'd be happy to get there." The contrast between them and me becomes more clear in those silent moments. I try not to say these things. I'm a kind person, and I don't like making people uncomfortable, but I am uncomfortable all the time. My skin no longer fits, and I feel stretched thin. My resilience everyone so admires is an empty promise.

I am not comfortable with my diagnosis, and my blog might not be comfortable to read. I have found, though, that it is with this discomfort that I need to spend the most time. It is with this discomfort that I need to sit and be, because maybe I can make peace with it like an old injury. Maybe one day it will just ache, and I will simply know the weather is changing.

All is well,

Amanda