Living.

     Some of my favorite people died within the last month. Seven of my favorite people, to be inexact.  I only started counting when the death notices started to become overwhelming.  I have unsent cards on the kitchen table meant for some of these people.  I have not only grief because these people will be missing from my life, but also regret because these people will never know what I meant to say.  Or maybe my regret is not that my thoughts and feelings were not heard, but that I never expressed my thoughts.  Those thoughts and feelings are still inside my heart, the potential to interact forever gone.  By withholding my thoughts, I didn't fully participate in their lives. I failed to engage in life when I had the chance.  Particularly inexcusable because of my status as a Cancer Survivor.

     I have been surviving with cancer for almost 4 years now.  I would like to say I have been living with cancer.  I like to think I have mastered the diagnosis-thing, the treatment-thing, the patient-thing and the dying-thing.  The living-thing that happens between all those other things  gets lost.  My life has narrowed as my body has become less reliable.  I am most comfortable closer to home these days.  I have been searching to redefine living.  I get out of the house most days.  I make sure I have activities on the calendar.  I go places and see things.  I show up.  That's not quite enough.  As I walk by that pile of unsent cards on the kitchen table for the umpteenth time, I realize what has been lacking.  I need to engage, to lean-in. (Pop psychology reference intended.)

     I am a reluctant Cancer Survivor.  As I move further from my diagnosis date, as I survive longer, I feel the weight of expectations settle around me.  I know the statistics, about 70% of my fellow sisters won't be survivors 5 years after their diagnosis. I look around me and watch my sisters fall.  It seems that many fall in their 6th year. Will I?  Will we die in vain?  Can I carry the memory of their existence?  How many can I carry before the weight overcomes me?  Why is ovarian cancer still so deadly?  What can the few survivors do to change that for the future?  Will we live long enough to accomplish anything?  I don't have enough time. So why even try?  So I don't.  I haven't.  I don't want the job of Cancer Survivor.

     Yet I have the job.  I have been in training under the protective wings of my sisters who have traveled this path before me.  It's my turn now to mentor.  I probably won't start a charitable foundation or discover a cure.  My job might be smaller in scope, but not importance.  My job is to engage.  Engaging in human contact is living.  I can offer an example of how to live with cancer by actually doing it.  I can show up at support group meetings and share a story that will bring a smile and hope to someone newly diagnosed.  I can share my medical knowledge and help someone get the care they need.   I can reach out  and offer human kindness.  I can actually mail those cards on the kitchen table.

   

   

   

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.  

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.
   

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.

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. 

 

Scanxiety

     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.........

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.