Thursday, December 19, 2013

Maybe Mabel

I am a cat. I am an orange cat mostly. My feet and nose and chest have white, but the rest of me is orange stripes. My person calls me Mabel. I'm okay with that. My person is always asking me “What is your name?”. I never answer.

A name is subjective. A name depends on who is talking to you. The lady I used to live with called me another name, not Mabel. But that name is private between me and her. She's gone now and so is that name. She taught me manners, to not beg for food from her table, to not draw my claws with her, to not yell in the house. I am a polite cat. I am a lady.

After she went away, I moved to another place. There were many, many other cats there. It was hard to live in a place where cats never stayed very long. I made some friends, but then they left and I was alone again.

I learned to stick to myself. Then I moved to another place. They put a card on my box that said “Mabel”. I stayed there a long, long time. I lived in my own box with bars, never speaking to anyone or making friends. One day, my person came by and visited all of us cats. She spent hours meeting everybody. Some other cats would poke at her from the bars or yell for her attention. What manners! I would never yell or jump for attention. My person came by my box and tried to get my attention. I did not turn. My person asked me what my real name was. I did not answer. My person asked to spend some time with me in another room, a bigger room without bars. I stretched my legs and looked around. There were so many other cats, rooms and rooms I had never seen from my box in the hall. What a big world this was! My person wanted me to move in with her. I waited patiently by the door. We went into the cool evening air and I smelled the flowers and trees on the breeze. I started to ask, just once, “where.....?”. My person told me it was okay, “we are going home, we will be there soon.”

I live in another place now, with my newest person. She doesn't mind if I spend my days warming myself on the back of the couch in front of the big window. I get my exercise by running laps around the house. I eat well, but not overly so. I want to keep my figure. My person calls me Mabel. She says that she will call me Mabel until I tell her my real name. I'm okay with Mabel. She lets me crawl under the covers on the cold mornings after I wake her up by purring loudly. That is the only polite way to get attention. She says, “Okay, Mabel. By the way, what's your real name?”. I never answer.  

Saturday, December 7, 2013

Power to the Sisters!

     So, I am standing in line waiting to pay my library fines today.  I notice that the clerk is wearing a chemo head wrap.  A beautiful wrap, but it's obviously a chemo turban.  I never wore a wig or turbans or head wraps.  I wore bandanas and hats.  I have a bandana to match any outfit.  I really like to wear the black one with little white skulls.  I have about a inch of hair now, but it's still obviously chemo hair. I wear my hair in the little-boy-summer-crew-cut style.  Tres chic.

     But I digress.  As I am standing in line, I am wondering if I should say anything to her about her wrap. Perhaps I could offer some encouragement.  "It gets better".  I realize she does not want to hear that.  She wants me to treat her as if she is not wearing a head wrap, even a beautiful head wrap.  I decide to just be pleasant, but not say anything.  Tres normal.

     Without warning, my eyes are hot and my chin quivers.  I am fighting back tears, afraid that I will break into an audible sob.  It's my turn to step to the counter, but I barely have control, let alone the ability to speak.  Tres cool.

     I clumsily take my wallet from my bag and coins fly everywhere.  At least I have a moment to collect myself as I stoop to gather my 35 cents, smashed pennies, and chinese fortunes.  I complete my transaction with my head down, pretending to count change, pick lint, whatever.  I look up at the last minute to say "thank you".  I only trust myself to a quick glance from the angle of my eye. We lock eyes for a split second. Just a moment, a molecule of a moment, a moment loaded with knowing, an exchange of solidarity, a moment of silent sisterhood.  I went to the car, then I sobbed, then I smiled.  I like to think that she did too.

Wednesday, December 4, 2013

Now what?

     I am wondering what I am supposed to do with my life.  At the time of my cancer diagnosis, I panicked and prepared to die.  Then I didn't die.  Now what do I do?  Go back to the same work as before?  Go back to school?  Sit around and wait for my cancer to flare up again?  Eat, pray, love my way around the world?  Get a dog?  Trade my house for an RV and drive the highways and byways?  What do I do now?

   I had another version of the same dream again last night.  I'm back behind the pharmacy counter, counting. Hum de dum.  Mrs. Bevilacqua* comes to the counter to pick up the prescription she ordered yesterday.  I find the order and discover that Pharmacist Sheila* (PS) did not complete her work when she was on duty yesterday.  The vial is filled but there is no cap.  PS covered the vial with tape.  I can't find any caps.  I find another bigger vial for Mrs. B's pills and then notice then PS has filled the wrong strength, giving 3mg instead of 6mg and marking the label in pencil to "Take 2 tablets."  Mrs. B does not understand English.  This will not do.  I want to restore the original prescription.  I need a new label.  The printer jams.  I call over Technician Ted* as he is the best tech, ever.  He has been searching for the missing caps in the warehouse.  Mrs. B does not appreciate Ted's humor.  He upsets her greatly.  I notice the line behind Mrs. B now extends out the door.  I notice the clock on the wall says 5 minutes to closing.  I now notice that most of the stock bottles on the shelves are full of expired medication.  I find one bottle in the back corner but I cannot reach it.  I can almost grasp it with the forceps, but keep dropping it, each time a few tablets fall out (no  lids, remember) and roll behind the shelf, lost forever.  I only need a few for Mrs. B......

   I awaken with a gasp, understandably anxious.  Whew, I guess I answered part of my question.  I need  not return to the same work as before.  But then, what?  

*All names have been fictionalized.

Saturday, November 16, 2013

Return Trip

     I visit my gynecological oncologist at least every 3 months. I usually am called back to be weighed, led to my room, have my blood pressure checked and told to "sit tight" while I wait. Where I get to wait tells me a little bit about what to expect. Waiting fully clothed for the Physician's Assistant (PA) in an exam room tells me that I can expect more of the same; like a typical chemo check appointment. Waiting half naked for the PA tells me that my blood work is good, but I still need an exam. Waiting half naked for the Good Doctor tells me that something is up; like an undesirable test result. Waiting fully clothed in the conference room for the Good Doctor is the worst;  like a planning appointment for surgery or more chemo. 

   Two weeks ago, I am waiting, bottom half  naked under a paper sheet, for the PA. This is what I expected. She enters the room and we exchange pleasantries. How's my breathing? Any pain? Anywhere? Bowel movements? Bladder working?  She's trying to suss out tumor growth by addressing the common symptoms. This is what I expected. She listens to my heart and lungs, palpates my lymph glands and belly, gives a full gynecologic and rectal exam. This I what I expected. She seems extra diligent today though, asking me if my bladder is full. It's not, I just emptied minutes ago. She keeps pushing and prodding. She says she feels "fullness". Shit. This is not expected today. She tells me my CA-125 has doubled and asks me to stay longer so the Good Doctor can see me. Shit. Shit. Shit. Shit. Shit. 

   I know the usual course of my disease. I know that my first recurrence was marked by a CA-125 level that continued to steadily climb, without any presence of symptoms, until there were symptoms. Even though I remember the Good Doctor telling me that he probably cannot cure my cancer, I was not expecting this to happen again so soon after finishing chemo only 3 months ago. Shit. This is what I kept saying as I paced the room, waiting. I don't really remember anymore details of the appointment except that I felt very flushed as I strained to listen through the sound of the blood rushing in my head. I kept thinking so soon? and kept repeating Shit. I did think enough to take a self photo with the camera on my phone to see what I looked like at this moment. In the photo, I recognize that person that looks back at me in the mirror from my times of chemo, the dull stare and seeming emptiness. That look belies what is happening below the surface.

  Inside, I am thinking all the horrible thoughts. I am seeing the long, slow, painful decline to death. I am hoping for that proverbial truck to take me out quickly. I am thinking that I cannot do chemo again. I am wondering where my line is, when do I stop fighting this unstoppable disease and allow death to come. How much can I take? How much do I want to take? Those are different things. Who will take my cat? Why do I have to do this again? Why can't I be one of the lucky ones? 

  I brooded over this development for a few weeks. 

  I don't remember those weeks really, they are dark and lost. I don't care to go rooting around to discover any nuggets of hope or positive thinking. I offer no directions or guidance on how to conquer such things. I wallowed, until I was done. I was done last Tuesday. I was driving down the hill from the public library and a song on the radio, a metal song from the 80's,  prompted me to turn up the volume. I started singing along and POOF.....the sun was brighter, the wind was warm in my face, and a smile came over my face. I knew that it had lifted, that dark period was over. I surfaced with a pop, back into life. 


Saturday, October 26, 2013


     Scanxiety. noun. 1 a state of uneasiness and worry about the results of a future scan or test. 2 a feeling of being powerless and unable to cope with threatening events, like scans and blood tests scanxious adj. 

     This is my state of being this fine weekend. It crept up on me slowly and I did not recognize it at first. I have been vaguely unsettled. I am unable to focus and struggle to comprehend what I read. I find television annoying. (Now, some of you will say "duh" but I heart my shows) I have taken to starting to watch a show, cannot settle, so I pick up my crochet hook and start working on a project, any project. The noise from the tv soon interferes with my concentration, so I eventually mute the sound. I work for hours, often until 2am or so. When I sleep, I dream my recurring pharmacy dream. In this dream, people keep dropping off fistfuls of  prescriptions to be filled until I am overwhelmed. I wake up stressed and tired. This morning, I got the automated phone call to remind me of my appointment with my oncologist next week. Ah, there it is. I am scanxious about next week.

     Scanxiety is common among cancer survivors. These scans and blood tests hold the key to our futures. Will we get a good result and a free pass for living for a few months? Or will we get a result that requires action, like more surgery or more chemo? These results define our futures. My cancer surveillance requires check-ins every 3 months, so my scanxiety peaks every 3 months or so.

     So....I will have my blood drawn on Monday for my CA-125 level. I will try to forget about it on Tuesday. I will have my power port flushed on Wednesday morning and visit with my doctor in the afternoon. He will examine me (read poke and palpate) and tell me the results of my blood test. And then I will know what to do for the next 3 months. Until then, I  hold my breath.........

Monday, September 30, 2013

Setback, again

     Today, many thoughts and feelings are swirling around in this head o'mine. Heck, not just today but the last few weeks. One will circle and land for awhile, almost long enough for me to get a handle on it, then its gone, only to be replaced by the next. One theme, that seems to be revisiting again and again, is "how do I live with this thing called cancer in my body?"

   I nicknamed my cancer Clive. That made it easier to talk about. I could say Clive when my mouth stumbled around the word cancer. I garnered strength when my friend said "kick Clive to the curb". We celebrated when Clive apparently was kicked to the curb. We told him he wasn't welcome. We thought he was gone. But Clive isn't gone. We may have kicked him to the curb, but he just moved down the street a little bit. After treating this first recurrence for several months, my doctor said that he doesn't think he can cure my cancer. Because Clive has shrunk to a  very small hard little nugget and the side effects of the chemo treatments were piling up, we stopped treatment. I was happy about this, elated to not be subjected to those drugs, and accepting of Clive's inert presence. That was the way I felt that day and many other days. Some other days, I am panicked by this setback. Other days I am angry. Some days I am struck by the grief all over again. On a good day, I go about my life.

   One day, I was going about my life when I read about a promising new drug in development for recurrent ovarian cancer. I had a burst of excitement and hope.  As I eagerly read further, I see that the trial is not for ovarian cancer. This drug is for someone else, not for me. My hopes were dashed, which subsequently ignited a little fuse of anger. Why do I get the advanced metastatic incurable cancer? Each time my hopes are raised then crashed again, it reopens the wound of grief, of loss. It's an emotional setback every time. I read ahead to the end of the article and saw that this promising new drug adds 2.3 months to survival time. 2.3 months?!?!? All this hubbub over 2 months?  It's only 2 months, someone else can have those 2 months. That's how I rationalized and closed up my grief so I can live my life.

   One day, I was going about my life when I felt the familiar gurgle of angry bowels. The artifacts from my cancer treatments affect my everyday life and it will always be so. I have had most of my small bowel and a large portion on large bowel removed over several surgeries for my cancer.  My guts are precariously balanced and any little unknown thing can wreak havoc. On this day, I was with my friends enjoying the autumn sunshine, good food and live music. I had forgotten about Clive. Until I was reminded by the gurgle. I made it home without any unfortunate events, but awoke later that night in a cold wet mess.  I was afraid to go back to sleep. The renewed grief that my body will never be the same was overwhelming. I angrily ripped the sheets from the bed, found the package of Depends in the closet, and cried myself back to sleep. In the morning. I finished the laundry, remade the bed and went back to living my life.

   One week, I was going about my life when I met some other women who share my diagnosis. This is rare, because ovarian cancer is relatively rare, about 1 in 70.  I met a whole gaggle of women in Goldcreek, Montana at Camp Mak-a-Dream for a weekend retreat for ovarian cancer survivors. I met women at every stage of treatment. These women all have setbacks. And yet, they do amazing things. They travel, they start foundations, they volunteer, they raise families, they live life. I benefited greatly from seeing these things. I saw survivors with 5+, 12 and 20 years experience. I stared with admiration.  They shared their wisdom with me and I collected it up with both arms. I saw what I could be. I saw that setbacks are temporary. We agreed that yes, cancer sucks. I saw how they lived their lives and realized that I could do that too. I saw that I am not alone. That's why I share my own experiences. Someone, somewhere, someday may need to hear the sometimes unsavory details of my life to feel better about her own life, to see that she is  not alone. In the meantime, I'll go back to living my life.

Sunday, September 1, 2013


     September is my birthday month! Yay! I'm going to be 50! Yay! A friend asked me how I felt about being 50. Now, I know that many people are upset over being half-a-century old, mainly because 50 is, well,  old. I know that nobody wants to be old. That is nobody except me, I want to be old. I have always wanted to be that kooky, funky, yet hip, old lady. I am starting early because my time frame has shifted. I always thought I would live to be 88 and planned my life as such. However, as you know, things have changed a little bit. I get to be kooky, funky, yet hip, now. I remember a time when I didn't know if I would live this long. I did! I am 50! Let the kooky, funky, yet hip begin....

     But before all that begins, I feel the need to share this....

     September is Ovarian Cancer Awareness month. The women who live with ovarian cancer, along with their family and friends, are very aware. The general public, not so much.  I will share a little story that exemplifies this.  I was once stopped by a stranger in a parking lot.  She asked if I had cancer. I'm pretty sure she could tell because of my rockin' hairdo. She said something I don't remember that made it obvious she was talking about breast cancer. I corrected her and explained that I had ovarian cancer. She exhaled a long sigh of relief and exclaimed "Thank god it's curable!". Bless her heart. It's not curable. She didn't know that, yet. I had to educate her. And I will educate you as well.

    Ovarian cancer is relatively rare. About 1 in 70 will develop ovarian cancer. In comparison, about 1 in 8 women will develop breast cancer. Despite it's rarity, ovarian cancer is deadly. Of those diagnosed, about 30% will be alive 5 years later. In comparison, of those diagnosed with breast cancer, about 85-90% will survive those 5 years. Ovarian cancer has a high fatality rate probably because the majority of cases are not found until the disease has spread throughout the abdomen. This is Stage 3 cancer and most of us, about 80%, are diagnosed at this stage or later, Stage 4. There is no Stage 5. The answer seems simple, find the cancer earlier.

   Ovarian cancer has long been called the "silent killer", presumably because it has no symptoms until its too late. There is no current screening test. I am here to tell you that there are symptoms and signs. Ovarian cancer is not silent, but it whispers, so you have to pay attention. Pay attention to these things: 
          1. Bloating
          2. Pelvic or abdominal pain
          3. Difficulty eating, feeling full quickly
          4. Urinary changes, urgency and/or pressure in the absence of infection. 
          5. Fatigue

These symptoms could happen to any of us on a bad day. The key is  frequency. If you have these symptoms almost daily for more than 14 days each month, please see your doctor. Ask your doctor to tell you why you do not have ovarian cancer. Ask for a pelvic/rectal exam, a blood test called CA-125, and a trans vaginal ultrasound if warranted.

     Be your own advocate.  This disease can be curable if found early. Most of us living with ovarian cancer would tell you that our own conditions worsened as we slogged our way through the medical system looking for a diagnosis. Most of us did not push for tests or answers. We did not know that we were dealing with ovarian cancer. We did not know the symptoms. This is the real reason why ovarian cancer is a silent killer, nobody talks about it. I'm talking about it. I'm telling you my experiences so that you don't have to repeat those same experiences. I did not know. Now you know.  Use your knowledge. Tell a sister, tell a friend, tell a daughter, tell a mother, tell every woman! 
    For further information, please visit


Friday, July 12, 2013

Get Busy Living

LATEST NEWS: You might remember that I was looking forward to the end of chemo. Well, doctor called on Wednesday night and said he was cancelling my chemo. That was easy! Why now? He emphasized some key points with me. 

1. This cancer cannot be cured. 

2. This cancer has been beaten down. I have had an excellent clinical response to treatment, my scan is good and my CA-125 marker is as low as ever. 

3. Myelodysplasia is bad. You might remember all the delays and house arrests I had during these last cycles. That's because the side effects of chemo are cumulative and pretty much don't go away. My bone marrow is suffering and cannot keep up with the demands for RBCs, WBCs and platelets. Doctor wants to preserve as much function as possible while also giving me options for the future. If my bone marrow is blasted, I will not have the same treatment options in the future. I will need treatment in the future at some point. 

4.  So, if we stop now when I have good response and good test results, I can restore my health and my life and also maintain future options. 

So, Yay! chemo is over for now. I am giddy! So, pardon me while I get busy living. Stay tuned....

Tuesday, July 9, 2013

Hope through Reiki

     My health center, the Institute for Cancer and Center of Hope, offers Reiki sessions at no charge for those in cancer treatment. Reiki is a Japanese spiritual practice of hands-on healing that transfers universal energy, known as chi, through the palms of the practitioner to the body of the patient in the belief that such energy can promote healing and equilibrium. (Don't be distracted by the terminology, which in this case is eastern Buddhist. If you want western Christian terminology, Reiki is where a healer lays his hands on a believer and heals him through the power and spirit of God. Same thing.) I have had 2 sessions and have an appointment  this afternoon for my third.
    At the least, my sessions have provided an hour of relaxation and distraction from my disease. At the most, my sessions have given me moments of inspiration, flashes of understanding, where the meaning of the whole is suddenly clear. These moments are fleeting, but unforgettable. My written words will do little justice to the power of the moment, in the same way a photograph cannot wholly convey an experience. I will try, none the less.

    I seek healing. Notice I do not say "cure". Healing is about my body and my spirit. The body and spirit are complexly intertwined and feed each other. Physical pain can damage your spirit and spiritual pain can damage your body. Think about the last time you had a toothache and how grumpy you were because of the pain. It's that simple. Just as I would seek to treat the pain in my body with analgesics, I seek to treat the pain in my spirit, to heal my spirit in order to bring balance into my body (and heal my body) simultaneously. It's simple, but not easy.

     My sessions have helped me realize that I have some anger hiding in there. Anger at being sick, anger at my setback, anger at myself for letting myself slip back. How silly, I am mad at myself for letting me get cancer, again. Now that I can see that, I can acknowledge it and let go of anger's damaging effects. I have been depressed, sulky, ungracious and miserable these past few months. These are all outward expressions of my anger, I am acting out. My belly has been miserable too. I have painful cramping, sudden diarrhea, excess acid, general indigestion. I now chose to let go of my anger. When I notice my angry behavior, I can stop. I can change my focus to my target and find some compassion. My selfish anger can go. I can be done with that and I can heal. I can heal. Imagine that.

    P.S.  Imagining healing restores my hope. I didn't recognize that my hope was lost until this moment. Wow. My heart just might burst open. Um, thanks for listening to my breakthrough.

Sunday, June 30, 2013

Done, But Not Yet Finished.....

     I am done with treatment.

     I am not finished, according to my doctor and the plan, but I am just done. I want to be finished. I am bored with the details of treatment, like labwork. I am done, so I forget my labwork each week. The idle chit chat with the lab tech each week is just boring. I am so tired of smiling each week and making up something interesting to talk about. I can usually come up with a good lunch story, as in "I think I will go to lunch today at _________."  Maybe I will go to lunch but probably not. I am too wiped out and will probably go home and sit on the couch with the laptop. Like I said, boring.

     I am wiped out because I have had so much chemotherapy. This is my third series of treatment. I started again in February because of my first recurrence of ovarian cancer. I am getting the same drugs I used the first time. This is good because that means I have a response to these drugs, I am platinum-sensitive. This is a good thing for my prognosis. This is a bad thing for my body and the side effects of these drugs, paclitaxel and carboplatin. The taxane drug, the paclitaxel, causes neuropathy, numbness and pain in my fingers and toes. The platinum drug, the carboplatin, messes with my blood chemistry and bone marrow. I have constant electrolyte issues that require buckets of anti-diarrhea medicines and infusions. I have constant blood counts issues, low white blood cells, then low platelets, and always anemia from low red blood cells. This affects the activities I am allowed to participate in. I have to avoid other people (germs), knives (I might cut myself), bikes (I might fall and injure myself), fresh fruit (germs), uncooked food (germs), flossing (bleeding)....and the list goes on. It is no longer interesting to me to even explain this. I hear blah, blah, blah when I talk. The topic never changes.

     I am tired of being bald in public. I really like when I can wear a big hat and sunglasses and hide. If I cannot hide, I see the looks at my head. I ignore the looks. I walk the other way. I am tired of answering the questions.

    I am done with cancer. I want to be able to tell you about the fun things I am doing. I am not doing fun things. I am housebound with low white blood cells this week. I could go out, if I wear a mask. Great, a bald girl wearing a mask. How fun is that?

     I am done with cancer, but cancer is not yet done with me. I will keep my appointments and wait impatiently until this series of treatments is finished. I can't wait.

Thursday, March 14, 2013


     I can't shake the waking remnants of the dream from a few days ago. The sleep was drug fueled and sporadic, hardly restful sleep. I drifted to awareness with a vague dread, a cautious hopefulness that maybe today I would be myself, not the steroid-raging shell of exhausted alertness that stared me down in the mirror. I can't look at that woman in the mirror. Her eyes are spent, yet intense, boring  into my own eyes, demanding something, anything other than the status quo.
     I woke with the absolute surety that my midsection was a pile of embers, a pile of charred bits of black. A deep pile that would stick to my fingers if I touched my belly. It smelled.  I so wanted to touch it and verify that my belly had indeed been incinerated. I did not touch it. It was just a dream, after all.
     But it is not just a dream. I yearn to have the landscape of my belly be laid clean. I believe that the way to healing is through treatment. I spend hours visualizing my belly as a pink happy place, with shiny healthy cells. This a step further down the path. I have to push forward through the tangled undergrowth and clean it out.  I can visualize the pink healthfulness there, made possible by the passing devastation of chemotherapy.

Monday, February 4, 2013


    I am fragile tonight. I walk tough and talk tough and usually am tough, but tonight I am fragile. This is the eve of my meeting with my oncologist. The meeting where he reveals to me the results of my CT scan 11 long days ago. I have filled up those days with chores and errands and lunches and day trips. I have new eyeglasses, pretty funky ones I might add. I have clean teeth and gums. I have current insurance policies. I had some fun times these last 11 days. I saw a favorite songwriter perform live. I traveled to a new place for a day. I spent an afternoon walking by the lake, twice. I did all these things to bolster myself. To provide some kind of framework to hang onto. It worked, mostly. There are cracks. I have cracks.

   This scan is to reveal the size of my nodule. That's the word they said, nodule. I hear, small. I hope small. I can do small. But what if ...... I can't say it. I thought I had a handle on this. I thought that when I had a recurrence of my ovarian cancer, I would be oh-so-sophisticated about it, so cool and composed. I have done this before, after all. I was pretty tough about my chemo treatments before as well. I would check my go-bag for water, book, tissues, crackers, mints, lip balm. I would dress in comfortable clothes but be sure to wear short sleeves to allow IV access. I took extra care to be oh-so-controlled. I would drive to the hospital, park in my usual area, gather my bags, walk down the stairs, across the street, down the hall, greeting all with a smile and a warm hello. I would make my way to the elevator, push the call button and wait. That's when I just knew that all the eyes in the waiting room behind me were looking at me, they knew I had cancer, they knew I was going to get my chemo upstairs. I would look around, smile and say something friendly to those eyes that weren't really looking at me. The elevator would arrive, the doors would slide open with that swoosh sound, and I would take that big big step inside. The tears would fall then. Always in the elevator. Sometimes other places too, especially towards the end, but always in the elevator.

  So tonight I find myself in a figurative elevator, wondering to which floor I will travel. Surgery? Outpatient infusion? I am delicately bonded together by all my activity of these last 11 days. I am preparing for the worst, while hoping for the best. The dread of what my dear oncologist may say to me has my belly in a tight ball of pain. So, please, dear doctor, be gentle with me tomorrow. I am so in control that I might shatter when I hear your words.

Friday, January 18, 2013

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, 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."

Friday, January 11, 2013

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."



Wednesday, January 9, 2013

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.


Monday, January 7, 2013

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.

Tuesday, January 1, 2013

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.

     Enough! So what if I can feel those telltale symptoms again.

     Enough! So what ......whatever.

     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!