Hope Eroded

     I am chatting with my online ovarian cancer sisters tonight. I do this most nights. We check up on each other, follow progress, cheer success, offer advice, share recipes, ask questions, suffer setbacks, laugh darkly at cancer humor. We have a weirdly intimate connection for a group of women who have mostly never met face to face. But tonight feels different. Tonight is heavy with grief. We have lost 2 sisters. Our dear C, whose kind heart reached out to help others even when she was suffering herself, and feisty B, whose love of life taught us all to never stop. News of more deaths, of other sisters, trickles in tonight. Our conversation turns unconsciously to the details of their lives, how old? what stage? when diagnosed? We are comparing her story to our own. We compare both stories to the statistics. We admonish ourselves for doing this, but we cannot stop ourselves from doing it.

     We all know that statistics are just numbers, but when you hear that a friend died and she was 49, stage 3, diagnosed 3 years ago.....and those are your numbers too....man, that gets real. The room gets quiet. Someone says that statistics mean nothing. Someone offers a story that contradicts the numbers, a story from the other side of the numbers, the odds defying story. Someone says "Amen!"  Silence. Someone is crying. Someone else just says "fuck". We hug. We go our separate ways for a moment or twenty or a hundred.

    The heart of the silence is this, a little part of our hope has died. Our hopes are dampened  by what we see happening around us. I hope I don't get cancer. Oh? OK, I hope it's not too bad. Oh? OK, I hope I don't have any complications. Oh? OK, I hope it doesn't come back. Oh? OK, I hope it doesn't come back too fast. Oh? OK, I hope....... gosh, I am afraid to hope.

     So why do I choose to hang around a group of women with ovarian cancer? Obviously they are bringing me down, what with all that dying. Maybe I should not be friends with other cancer patients. I will argue that those who are closest to dying are those who are closest to living. We share recipes because we love to eat delicious food. We laugh at ourselves because it's funny, really, even the cancer stuff, really. We ask after each other because  we understand not only the heartbreak of a setback, but also the joy of beating back the beast. We encourage each other whenever we can, with empathy (not the head-tilt-of-pity). That's what cancer people do for each other.

     The ovarian sisters are back, some of us anyway.  We talk about healing. We talk about knitting. We act normal with each other. Someone says "Know what I hope for? I hope to live a good life."  Someone says, "Amen."

Words That Haunt

Word that haunt me:

    Chemistry TA yelling at us, her organic chemistry students: "You guys are way too careless with that benzene. Some of you guys have it up to your elbows when you're washing your glassware. It's a known carcinogen. Don't come cryin' when you have cancer in 20 years."


   My oncologist when relating the risk of colonstomy: "It's 100% risk if it happens to you."


   Words found on a card from a recently deceased friend: "Let's get together and let's make it happen sooner rather than later."

   


    

Dear Clive

Dear Clive,

     Do you mind if I address you by that nickname? Your real name is such a mouthful, Epithelial Papillary Serous Carcinoma, III. Who uses such titles these days? Jerky fart faces like you, that's who.

   You insinuated yourself into my life, crying for attention. Making a big ruckus that was all about you, you, you. I stopped everything just to tend to you and your wishes. I gave up my job for you. I lost a boat load of friends. Nobody wants to be around the guy who always has to have all the attention. I restructured my life to account for your presence. I gave over control of my body. I gave up everything for you.

   I tried to break up with you, but you wouldn't leave. You hid in the corner in the dark where you thought I couldn't see you. But I heard you breathing and knew you were there. You stalked me until I was paralyzed, afraid to do anything that might rile you. I gave up my favorite foods because someone told me that you liked it too. I ate nasty things because someone told me you would hate them too. I did everything for you.

  Well, I have had enough! I am moving on. I know you got wind of my plan last week because you had a temper tantrum last night. Marianne Williamson was right when she called you a bratty child vying for attention. A bratty child who wants to do everything his own way. A bratty child who ignores others for the satisfaction of his own selfish needs.  There must be a way to get through to you and make you stop.

   I recognize that you are part of me. You came from me. You are me. By striking you, I am striking myself. A strike might deplete you, but it also depletes me. I am striving to replenish and heal myself. I want to not hate you. (Marianne says I should love you.)  The fighting all the time with you is exhausting. I want to be whole. I want peace. We need to do this together. I cannot do this if you act out, even a little.  You need to get in line, join the program, make nice with your neighbors. You are not the only one who needs things. You don't have to be defensive and nasty and ....well, you don't have to be a bully. We can do this, but only if you make nice.

Sincerely,
Me 

Getting Busy

     I got busy living last week.

     I got some cute new clothes that fit. Not clothes that fit the body I had before this cancer stuff started. Not clothes that fit my body after chemotherapy and bowel resections wasted my body. Clothes that fit this body that I have now. Not clothes for work. Not clothes for recuperating. Clothes for living now. I didn't really have many clothes that fit. Most were still too big. When I put on those clothes and looked in the mirror, I saw someone in sad baggy clothes. I saw a sick person. Blech. 

    I chose not to enroll in classes this semester. Don't get me wrong, I enjoy learning, but only for a few weeks and my class has 6 more weeks full of quizzes and tests and essays. Blech.

   I changed grocery stores. I went to Safeway and got a Clubcard and  started shopping there. I am no longer known to all the checkers as the lady who has cancer. I no longer have to answer the dreaded question, "How ARE you?" , spoken always with a head tilt. Blech.

    I joined another gym for the days I don't have rehab. I love the trainers at the health center who lead the Cancer Rehab group. Yes, that's what they call us, the Cancer Rehab group. We have fun and laugh. But when other members ask to join our class, the trainer says, "Oh, that's the Cancer Rehab group."  "Oh, well good for you guys." *fist pump*  So I am still one of those people who has cancer. Blech.

    I just want to not have cancer.

    Maybe  if I get busy enough I might forget about it.

Obligatory New Year Post

     Happy New Year everybody!

     I resolve to get busy living.

     I confess that I have been hiding out. I have been slouching around the house in slippers and a big ugly sweater. It's too much work to leave the house. I would have to shower and wash my hair. I would have to find my shoes. And it's cold out there. The weather channel says it's 16 degrees. Brr. I'll just stay home.

     Enough! So what if my bloodwork keeps coming back worse and worse.  Get.out.of.the.house.

     Enough! So what if I can feel those telltale symptoms again.  Get.out.of.the.house.

     Enough! So what ......whatever.  Get.out.of.the.house.

     Big breath of resolution. 

     This is happening. I better get out of the house and get busy living, before I can't. This whole thing f*ing sucks, but so what. I resolve to get busy living in spite of these things.  I see my shoes peeking out from under the sofa. I have a new bottle of La Source shampoo and a new tub of body butter. Get going!

Lost and Found

   


     I almost missed it. A cold, blustery day does not lend itself well to minute observations of the environment. My attention was focused on the black tar of the parking lot, specifically the next spot on which my shoe would fall, then the next, then the next.

     I noticed it with a flicker of attention, then dismissed it. I needed to run one more errand. I was tired and cold.  I was grumpy. I resented the trip to the pharmacy in the first place. When was I ever going to get to be normal again? I know, I know, this is my New Normal.  Eff that. "How are you? You look great!". I didn't look great, I looked tired and pinched and grumpy. I had made minimal grooming efforts that morning.  What they meant is "Wow, you're not dead yet!"  My grumpy self thought "Nope, not dead yet. Just dealing with all this cancer crap. How are you? Oh, the line was longer than you expected? So sad."

    My mind flickered back to that spot on the pavement. What was that? It looked like a guitar pick? I like music. I went back. I stared at it. I bent down and picked it up. I marveled that I could stand up after squatting. That was a new thing I had recently remastered after months at the gym. I noted that I could change my New Normal. Eff yeah! 

    I saw that it was a magnet, one of those thin flexible decorative magnets, not really strong enough to hold anything. It was dirty and scuffed up. I cleaned it off and flipped it over. 

     I found hope. Then I smiled. It was a reminder to me that hope can get lost in the daily grind of modern living. It is easily recovered when you take a moment to slow down and look around. Maybe you have to dig for it a bit. Spiff it up a bit. But it's there, if you look for it.

   

Update

Update Pharmgirll:

I have been visiting. I have been to Washington State. I have been taking some classes at the art museum and the community college. I have been neglecting responsibilities and obligations. I have a new pet cat named Mabel. I have been to the Redwood Forest in California. I have a new bicycle. I have been to Colorado, Wyoming, Utah, Oregon, Las Vegas. I still prefer my old Canon Powershot over that fancy Olympus digital SLR. I can still pass unrecognizable in my hometown. Life is good. 

 
Update Cancer:

I have been checking in with my oncologist every 3 months for 17 months now. This is standard procedure for the first few years after successful treatment. I have been hoping to make it 2 years without disease progression. This seems to be the magic number for a favorable prognosis. I am not sure I can make it to 24 months. So close, yet so far.

You see, my tumor marker has risen again. It has been rising since March but only passed into the abnormal range in September, then rose 30 more points in November. CA-125 is a tumor marker, but it is also a general inflammatory marker protein. It can be present under conditions of infection, injury, allergy, and stress as well as cancer. It's kinda vague.

The action plan is to monitor my symptoms closely for 1 month, then recheck the CA-125. I need to listen to my body closely now. I need to watch for the primary ovarian cancer signs like bloating, pelvic/abdominal pain, difficulty eating or feeling full quickly, urinary symptoms. I also need to be mindful of other signs, signs of metastasis, like shortness of breath or headache. I will keep track daily with a spiffy diary sheet I got from the Ovarian Cancer National Alliance. You can get one  here. You might have noticed that all those things I am watching are kinda vague.

Even though I am increasingly watchful, I am still hopeful. Hopeful for my immune system to beat the ugly beast down, again. Hopeful for my blood tests to return to normal without chemo. Hopeful that I can nurture my body with strong nutrients and my soul with tender care. Life is still good.