Friday, September 27, 2013

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.

Friday, September 13, 2013

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.

Wednesday, September 11, 2013

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....

Friday, September 6, 2013

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?


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