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.

   

   

   

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.

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....

This moment

     I have seen the end and it isn't pretty. I have witnessed the sequelae of ovarian cancer through the women who have gone before me. I watch and listen as their cancer recurs, from the first little sign until the end. From the first elevated CA125 result, through bowel obstructions, through the feeding tubes, the pain medication pumps, the pleurisy, the lymph edema, the cachexia, the hospice care admissions, the delirium, then one day it's finally over. It's not much to look forward to. It would be nicer to be run over by that truck everyone is always telling me about. You know the truck, as in "we could all be hit by a truck at any moment". That would certainly be a lot less trouble than the slow demise that seems to be the usual experience. Today, I learned of yet another ovarian cancer sister, Pateeta , who has been admitted to hospice care. Today, I went to support group and the sickest  woman in the room is another OC sister. Today, these woman and their experiences weigh heavily on my mind. They motivate me to truly live while I can, to not waste a single day or a single moment.
     Today, I will live the best life I can. I will eat good foods to nourish my body. I will walk in the park and hold my face to the sun. I will breath deeply and fill my lungs with fresh air. I will be present in my body, feeling the muscles in my legs as they carry me where I want to go. I will own my strength and be grateful for it. I will expand my mind with reading. I will exercise my creativity. I will share my view of the world. I will hope for comfort for my friends and family and myself. I will connect. That's the best life I can imagine.

    "I got this moment that I'm in right now and nothin else at all."
~ Todd Snider

Today I will.....

     I stare at my keyboard. It's not for want of words, but because of a bounty of words. My notes on ideas litter the house. My trouble comes when I try to distill my thoughts and ideas into a clear concise blog post. I don't want to be a whiner. I don't want to be falsely upbeat either. I just want to be genuine. I page through the notebooks and scraps of paper looking for a theme. Little snippets quickly scrawled before the thought escapes. Notes on treatment, notes on life, notes on words, notes on spirituality, notes on perceptions, notes on emotions, notes and notes and notes and notes. I find it impossible to pick just one note. These notes all work together, they overlap and complement each other. I cannot pluck one note and expect to be able to convey the complexity of the whole symphony.

     I think I am onto something here. Cancer is big, but it's a billion little things assembled that are impossible to know quickly. Those little pieces will factor into every decision made for the rest of your life. The decision may be as simple as what to eat for breakfast, what clothes to wear, what to do that day. My cancer rides on my shoulder, whispering in my ear all day. It says "Eat high fiber grains for breakfast to avoid a bowel obstruction and a trip to the hospital". It says "Wear your warm hat because you will get cold because you still have no hair because you had chemo". It asks "Do you have enough energy to be away from home for 6 hours? How about your bowel? Can you be that far from a toilet today?" It's a nag. It's my constant companion and cannot be ignored for very long.

     So, I have managed to pluck a few little notes after all. This is the morning routine at my house as I live it day by day. I have found that is the only way to live with cancer, one day at a time. I am reminded of the old joke that asks how to eat an elephant. The answer is that you eat one bite at a time. So, I will continue to share my elephant of a story with you, one day at a time, one bite at a time.