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. 

Labels

 Patient.

Victim.

Survivor.

Warrior.

Veteran.




I have been struggling with labels. I have bandied about each of these words, tried them on and none of them quite fit. None of these words can describe how I feel about myself right now.


Patient

   In the strictest sense of the word, this is accurate. Yet, the word implies active treatment, taking drugs, seeing doctors. I have cancer, but I am not in active treatment against my cancer at the moment. This is called remission. I only check in with the doctor every 3 months. I need to live life away from the doctors and hospitals as much as possible.  Too restricting. 

Victim

  No one wants to be a victim.

Survivor.

    The most common term. Proponents of this word argue that every cancer patient is a survivor from the day of diagnosis. I am  alive; ergo I am a survivor. This seems simple enough. Too simple. When I hear someone described as a Survivor, I think of a single event that is now over and the danger has passed.  Like the sinking of the Titanic. Or a plane crash. Does this relate to cancer? Well, cancer is certainly a harrowing, life-threatening experience. The difference is that I can survive this initial onslaught and still die from cancer years later. I am alive, but the danger is never past. Too misleading.

Warrior.

    This implies that I am fighting for my life. Well, okay, I am hoping to live as long as possible. Here's the rub...I  cannot be healthy in the adrenaline-surged state of "fight". Fighting requires loads of energy and loads of cortisol coursing through your veins. Cancer loves this.  Plus, there's that subtle  innuendo that those who succumb to cancer were not fighting hard enough. Too distasteful.

Veteran

    I was in favor of this term for quite awhile. It showed that I had done battle and survived, but it was in my past. Veterans have been to hell and probably don't want to talk about it all the time. People seem to respect my physical status, but most likely question my mental status. The biggest drawback is that this term detracts from the true veterans, the military veterans. Too vague.

Thriver!

   I want to be called a Thriver. Someone who has peace and acceptance of the circumstance and has constructed a life that nurtures and heals the  body and soul. Someone who  understands the future may or may not involve cancer again, and accepts that either way. Someone who takes each day and spends it the best way possible for that day. Someone who understands that sometimes the best thing to do to nurture your body is to pull back and rest and sometimes the best thing to do to nurture your soul is to stretch your boundaries, or vice versa. Someone who recognizes in each day a little peace, a little love, a little joy.  Today I found peace in the creative process piecing a stained glass window together. I found love when my sister OC ladies rallied to support a grieving sister. I found joy when I managed a difficult balancing pose. These things made me stronger today. I thrived today. That's the word that fits me today.


 

Peace

     Another friend died today. Or maybe yesterday. I got the news today. (Oh boy.)

     I know a fantastic bunch of women that I have never met. We came together because of our common denominator, ovarian cancer. We share our lives with each other in cyber space, in the cloud. We talk about our similarities in diagnosis and treatment and side effects and other cancer stuff. We also talk about our families and travels and hobbies and triumphs. We can discuss harrowing topics that normal people shirk. We can rejoice in the simplest things that normal people take for granted.

     Because of the reason for our connection, and maybe because of the intimate nature of our connection, we can never really escape the slow, deep, dark, undercurrent of the reality of our futures. We see it happen to our friends. We know the statistics. We know that less than half of us have a chance to survive for 5 years after diagnosis. We choose to ignore those effing statistics. Who wants to go around knowing that half of your friends will die within 5 years? No one. That's why we ignore those effing statistics. Don't get me wrong, we know the numbers, we just choose to live life in spite of those numbers.

   But those numbers catch us anyway. My friend was caught. I cried. Then I cursed. I cried again. I left the house. Searching for I know not. I ended up at the labyrinth garden and paced the path. Then I barged ahead toward my favorite spot at the outlook. I heard boisterous voices ahead. I turned and stomped down the path in the opposite direction. There it was. A spectacular affirmation of life. A falcon in the bare treetop just over my head. She perched on the branch, turned her head to look at me, then turned her whole body with a heavy hop to face me. She turned her head to each side, stretching her neck into the sky. She eyed me for awhile and let me walk closer. She posed for me while I snapped several pics on my phone. Then she spread her wings in a whoompf and took flight over my head. I craned to watch and her wings seemed to span an easy 6 feet. I could see the detail of the little feathers under her wings. She seemed close enough to touch in that weird way your eyes play tricks on you. Wow!!

    I inhaled with a gasp and a smile. I was filled with joy. I thanked her, yelling after her as if she would answer me. It was then I knew my friend had peace. And that gave me peace too.

Summer

    Sitting outside on the patio, I catch a whiff of summer on the light breeze. The way summer used to smell when I was younger, ripe and full of possibility. It makes me giddy.

   I have had a few memorable summers in my lifetime. The summer after high school, the summer after college. Those were times when I had just crossed a milestone and was eager for my new life to start, but not without a little kick-back and hay-making. I catch a whiff of that on the evening breeze.

   I realize, at this moment,  that I hold the gift of one of those transformational summers. I made it through the hardships and sacrifices of these past two years of cancer treatment and now I get to make some hay. I feel the sun on my skin and soak in the heat. I see the golden light at twilight and revel in that magic hour. I smell my sun-warmed skin and take a moment to chat with the warbling birds.

   It's time to get away. When I graduated from college I had a plan to travel the country in my car. I changed my plans when a job offer came my way. I need to take that trip now. I have another chance and it's time. I  have cleared my schedule and obligations. The dog and cat have died. It's time.

   I'm free! I'm in remission and free from chemo and recovered from surgery and free to go!

   Wait. I'm not. I still need monthly magnesium infusions (I call them refills as in "fill 'er up") because of secondary malnutrition as a consequence of a shortened bowel as a consequence of chemotherapy as a consequence of cancer. F%^*. I am still waiting on cancer. That rat bastard has a long reach and I still have not escaped. But I am least farther away from cancer than I was 2 years ago.

   Today, as I pace the floor, waiting for the phone call to tell me the insurance company approved my infusion so I can call the infusion center and schedule a time slot for maybe the next day if I am lucky but probably not, I force myself to release my expectation of leaving town. I cry.  I force myself to one of my self-imposed occupational therapies, something to do to occupy my mind. I cook.

   I have nothing on hand (because I'm leaving town, right?) but I slow down and look deeper. I bury myself in the process, marveling at how easy it is to cook in my new thrifted cookware. I taste and improvise seasonings. I serve myself on my new thrifted dishes. I am pleased.

Rhubarb-Strawberry Compote over Ricotta Filled Puff Pastry

   I eat on the back porch in the summer evening twilight and sniff the breeze. Smell that? Yeah, me too.

Therapy

     Last time I was stuck in the pokey (that's my euphemism for the hospital, the pokey)... as I was saying, last time I was stuck in the pokey for the long haul, they sent the occupational therapist to see me. I had to demonstrate my ability to dress myself by removing my socks, then putting them on again, over and over. They watched me hobble to the sink and brush my teeth. I suppose they would have been interested in watching me brush my hair, except I was bald, so no go on that. I was asked to demonstrate that I could retrieve an object from the floor or a high shelf. Easy enough I guess. They really wanted me to walk, yet they kept me tethered by  i.v. lines and a g-tube and drains hanging from my belly. They didn't want me to hobble to the toilet without help, yet they lectured me for not walking enough. They asked if I was depressed. Who wouldn't be?

    When I was a student, I worked and volunteered at the Good Samaritan Retirement Village. Some days,  I helped with the arts and crafts. I thought arts and crafts was silly. How could paste and scissors and markers help someone in a wheelchair? After my stay(s) in the pokey, I understand. It's not about the result. It's about the process. It's about the act of creation, the focus of attention, the healing that occurs when you participate in something, anything. That occupational therapist who wanted me to improve could have helped me by bringing me some paste and scissors and markers.

   Now that I'm home, I find myself drawn to arts and crafts. I get lost in the process of creating something, anything. I call it the Zen of Chopping. I cook not really to feed myself, but to prepare health for myself. I take my time preparing the ingredients. I find the beauty in a nicely sliced onion. A perfectly cooked egg.
But, it's not about the egg. While I enjoy eating a perfectly cooked egg, I benefit more from the process of creating it. By sinking my attention into the maybe mundane task of stirring, I am giving my mind focus. Focus that distracts me from the details of what has happened, from cancer. An ovarian cancer sister once compared cancer to a radio you can't turn off. That radio is poorly tuned, never clear, but always emanating sound. Some days the volume is loud and demanding, other days are a low hum, but that radio is always on. The task of preparing a perfectly cooked scrambled egg turns down that volume, dampens the static of that radio. "coming at ya from station OVCA.." 

   As a side effect of my search for Zen, I make almost everything from scratch. I relish the hunt for ingredients. I read cookbooks. I watch all the cooking contest shows. It's both a quest for health and a remedy for that  radio. Last night, I wanted cake. I made my favorite recipe from scratch and served myself on my grandmother's plate. I was satisfied and that radio was a faint buzz in the background. That therapist would very happy to see me cooking. Who cares about my socks? I hardly even wear socks.

 

Weekend of Hope

    At the beginning of this month, I was able to travel to Vermont for the Annual Stowe Weekend of Hope. I experienced a weekend of health, hope, inspiration, learning and fellowship with cancer survivors, their friends and families, and the people of Stowe. Met some great people doing great things. Tried watercolor painting. Tried  hula hooping. Visited Ben and Jerry's Ice Cream factory. Spent an hour with a Buddhist monk. Tried the local brew. Ate more than my share of truly delicious bagels. Hiked the morning dew at the Trapp Family Lodge. Hung Buddhist prayer flags. Toured the local ghosts in the misty night of the full supermoon. Had fun! In the midst of all this fun activity, however,  lay the kernel for what I am searching. I was moved by the vitality surrounding me. Everybody I saw was affected by cancer. We had an unspoken kinship from which to move forward. I liken the feeling to the moment the bee-girl finds her own kind in that video by Blind Melon.  This moment....

    What's so powerful about a moment like this?  The recognition without explanation. The acceptance without speaking. The mere fact that you are not alone. The connection. Someone else knows what happened to you because it happened to them. We all have common ground. We can move on now. And we did. The closing ceremony was a program of exuberance for life. Young dancers who chose not a dark inward somber piece, but a colorfully strong flowing life reinforcing piece. Local singers and songwriters who performed songs of healing and connection. There's that word again, connection. It's important. Connection to each other, connection to your feelings, connection to your body, connection to  life.

    The very last performance was a song that I heard several times that weekend already. The first performance my eyes teared up a little, with a touch of sadness. The second performance my eyes rolled, with a touch of anger.  This final performance my eyes flowed, with overwhelming release. I liken it to the moment the crisis breaks, when you realize it's over, you made it, you're okay and you burst into tears. That moment. I want to share that song with you now. Maybe it will have some power for you, maybe not. And that's okay....

                        

          Peace. Love. Ice Cream.

Roadmap

      I love maps. I loved geography class in school. I drew maps of the neighborhood, maps of the house, maps of my bedroom. I covered the walls of my dorm room with old maps from National Geographic magazine. One of my favorite books is the huge atlas that takes up the whole table when opened. When I arrive somewhere new, one of the first things I do  is get a map. I mark where I am and then I mark the places I go. Yep, I'm that geek.

     I especially like to study that map later and see where I have been.  I can see how big the Great Salt Lake really is. How tiny Great Britain really is. How close Vermont is to Montreal.  I like to study history by tracing events on a map. See how far those pioneers walked when they settled the American West? On foot? I'm not sure I would have done that. See that tiny chunk of land that everybody claims is theirs? It's very small. No wonder they fight. Looking at a map helps me understand people, helps me understand the past, puts it all in perspective for me.


      ***************************GRAPHIC ALERT***********************************

      ******************************REALLY!!!!!************************************

     ********************CLICK OUT IF YOU ARE SQUEAMISH************************

     ***********************It's not that bad, but really, you were warned********************


    At my appointment with my oncologist,every 3 months, they palpate my belly feeling for new growth. This time, when I bared my belly, I heard a gasp. "Wow, we really did a number on you." Yep. You can tell what happened to me by looking at my belly, by looking at the map of scars. It's not only a record of my past two years of living, but also a record of my challenges and indirectly a record of my triumphs. Let's take a look...

    It's all there for the record. You can see the main vertical valley from 4 major abdominal surgeries. The divot from the first ileostomy and the smaller divot below from the second ileostomy. The little hole from the gastric tube. The 4 smaller holes from the stab wound drains. You don't see the 4 more inches heading south ending in a big puckered dimple. You don't see my belly button. I finally lost anything resembling that after the last surgery. The main scar used to be straight up and down. My bowel perforation destroyed so much tissue that they had to sew me up patchwork style and hope that it held. I survived that! My belly looks pretty damn good after a year of healing! A year! Of Healing! Wow. That's where I've been. But I'm back now.  <3

   P.S. No wisecracks about the muffin!

   

Intermission

     I guess I can call myself a Survivor. It's been a year since my last chemo treatment. My oncologist, Dr. L, tells me he cannot see any evidence of disease. No Evidence of  Disease. NED. The holy grail of oncology. This is when other survivors tell of "doing the dance", the NED dance. I've seen women dance out of Dr. L.'s  office gleefully on the way back to their lives. I've seen women whoop and holler at their victory. Why can't I dance and whoop and holler? 

     I guess I am in Remission.  I can dance some before falling down. Whoop! Holler! Most women with ovarian cancer can achieve remission at least once. Ah, there it is, the nugget of discontent, I am in my first remission. Most women with ovarian cancer have a recurrence within 2 years. I am halfway through my first remission. I will most likely return to treatment. Whoop. Holler.

    I guess I am in Intermission. I feel the need to live life to it's fullest during this time, this precious timespan of no symptoms, no treatment, no cancer. I must not waste this time. I spent 6 months recovering from my last surgery and it's consequences. I have even less time now. I must not waste this even shorter timespan.

    I guess I need to get busy.

  

The Shrine

     I have a shrine to Hope in my living room. Ever since my diagnosis, these little amulets of Hope have found their way to me. These tchotchkes are a powerful reminder of the human spirit. They elevate my own spirit. They represent the power of the human tendency toward optimism. Even in the darkest hours, humans somehow manage to maintain a spark of belief that things will get better. What is that capability? Faith in the divine? Total denial? Coping mechanism? Maybe all of the above.

    The items in my shrine have personal meaning. They are connected to the giver, an extension of that person to me, an expression of their thoughts for me and wishes for my well-being. The fact that someone else saw this trinket, thought of me and made sure that trinket made it me, imbues that little trinket with powerful mojo for soothing a troubled soul. It is no longer just a trinket, it is now a tangible talisman of Hope. When I arrange my totems, I can feel the wishes for my good health, both physical and metaphysical. That brings me solace and peace. There is no better state of being than that.

 My Shrine

New Normal? I reject that!

I have been pushing through physical rehab these past 7 months. Today, my progress was evaluated. Mainly balance and strength testing with all these stupid human tricks like toe tapping, standing on one foot, the sobriety test walk, standing with eyes closed. I scored very well on most parts (flunked the sobriety test walk, hmm) and set a record lap count for the 6-minute walk. The director later told me that I was a "model patient" for the cancer recovery program and asked to include my history and progress in the study presentation she will make to the oncology board next month. That made my day!

You see, most people struggle through cancer treatments. We persevere through all the untoward effects, focusing on one thing, remission. A lot of us make it to remission at least once.  But our bodies are wasted. Our spirits are bruised. We look to our medical team to help us. After all, our team has guided our every move up to this moment. We are told to accept our "new normal". We "might not be the same". Duh. We have lost  hair, lean body tissue, muscle strength, balance, nerve function, bowel function, appetite, body image, sexuality, fingernails, or whole body parts. By the end of treatment, by the time we achieve remission (yay!), we are wrecked. Well, that's our "new normal". That is the standard of care as it stands today. That is so wrong.

I reject my new normal. I resent that I am left hanging, trying to scrounge and cobble together a way to recover. Cancer treatment should not end at remission, it needs to end after recovery of health. Health does not mean absence of visible cancer cells. Health means strength, vitality, spirit. I am thankful that I stumbled upon this Cancer Rehab program at my health center. It wasn't offered to me at the hospital or my oncologist's office. I found a brochure at my physical therapist's office. She happens to run the program. I am just lucky to have been assigned to her. Cancer Rehab needs to be a standard part of cancer treatment. Just as a stroke victim gets rehab or a paraplegic gets rehab, cancer patients need rehab. Health insurance needs to cover it. We have lost our health and it needs to be restored. We need help to do that.

That's why I am so excited to be included in this study. It is a small part that I can do to demonstrate not only how much rehab is needed, but also how much it can benefit the cancer patient.  I can scarcely imagine my life without the benefits of this program. I can scarcely imagine the lives of those who do not have access to such care. We need more of these programs.

OK, enough for now. Thanks for reading. Stepping off the soapbox now. :)

Related articles

• Cancer Patients' Health Benefits From Physical Activity (medicalnewstoday.com)
• Cancer Treatment Statistics & Results (cancercenter.com)
• Sleep Program At Cancer Treatment Centers Of America (philadelphia.cbslocal.com)
• Exercise a Good Pick-Me-Up After Cancer Treatment (nlm.nih.gov)