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. 

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.