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)

It's Been a Long Year, Country Joe

     It's been a long year.

     I have probably said that before in my lifetime, but this time I really feel it. I am definitely not the first person in the universe to feel this way. Take a peek at my favorite songwriter/singer as he focuses in on that end-of-year weariness. He says it better than I can. May I present that barefoot bard, the tipsy gypsy himself, Todd Snider!

(Applause!)

      I did get a chance to see Todd perform in 2011. I prayed for him NOT to do this song. Not because I didn't want to hear it, but because I didn't want my friends to see me sob. See, 2010 was a long year too. I was diagnosed in April 2010 with ovarian cancer and had undergone 4 surgeries and 6 months of chemo by the end of the year.  I had been relieved of my ileostomy bag with a third bowel resection. I was close to achieving remission.

    Even though I was still bald, I thought that I could see the light at the end of the proverbial tunnel. But it was an oncoming train. 2011 brought me more chemo, more bloodwork, 12 or more hospital stays, more blood transfusions, gallons of tears. Then that oncoming train ran me over. My bowel burst into pieces and I was trapped at the hospital for 6 weeks. It took me months to walk again.  I was at one of the darkest points of my life. Then I found Jesus. (Joking! Let's save that topic for another day.) Anyway....

     I shared all this so you might be able to appreciate my journey through these past years. I stand here at the end of 2011 and simply wish to move on into my life. If 2012 is the end of the world, let it be the end of the world I have known and the birth of a new life. I stand here, finally, fully present in this moment. Let me nurture my body, my mind and my spirit. Let me nurture others who may be in need. Let my life not be in vain. This is my wish for the future.

     And please welcome again, that charming outlaw storyteller, Todd Snider! He's alright.

Happy Birthday Country Joe!

Hope

Playing Scrabble this evening. Down to the last 4 tiles. Look down and there it is...........


H O P E. No arranging, just there, as a reminder. You always have hope.

Fish Farts

     Both of my chemo regimens involved the platinum drugs, like carboplatin and cisplatin. One of the many side effects of this class of toxic drugs can be ringing in the ear, or tinnitis. I have developed  this weird tinnitis, like a clicking sound. When I reported this to my oncologist, he smiled slightly, shook his head and said "I don't know about that". I have struggled to describe this sound. Today I found a video that has the exact sound. My tinnitis sounds like fish farts. Seriously, I hear fish farts.

I wonder if this will make the medical literature?

Return to Wholeness

My recovery from cancer treatment is complex. I struggle daily with medical issues from lingering side effects of chemotherapy. I take massive amounts of basic electrolytes to maintain normal blood levels. I shuffle around on numb feet. I regularly attend a cancer support group to learn from others and maybe to help others. I see a psychologist to help myself integrate what has happened to me with what I will become. I go to physical therapy to rebuild my wrecked body. I rely on interaction with friends and family to help me return to society. I don't work yet, hell, I can't really walk yet. I do all of these things in faith that I am recovering, a little bit every day.

But I am feeling schizoid. I have divided my online transmissions into sectors. I blog about books on LiveJournal. I update my medical progress on Pharmgirll Wire. I tweet. I blog here about my state of mind. I post on Flickr. I post crafty things in Creation Corner. I post food in Kathy's Kitchen. (I like alliteration.) I journal on Inspire. Mostly, I update on Facebook. I started all these different areas as a means to avoid boring you. I realize now that I have been presenting only one facet of myself on each site. A fractured facet, if you will.

Recovery is about returning to wholeness. Trauma fractures you. (what..too soon?) I am striving to find wholeness in my life. I am ultimately looking for purpose and reason, but I will settle for being whole, not only physically, but also emotionally and spiritually. Not that I know how to do that, yet. I am going to propel myself a few steps down that path by consolidating my profiles. My day to day life will leak onto these pages. Now that I am thinking about it, that is exactly how recovery can work. Each day can bring a little bit of normalcy, a little less about cancer and a little bit more about cooking and crochet. That sounds nice.

The C-Train

I read a blogpost today in which the writer described having cancer as taking a train. The train moves forward whether you are ready or not. You might want to stop and get off, but you cannot.  If you have a moment to look out the window, you will see the world whizzing past you. Most likely you will only notice this when the train stops for a moment, affording you a break. The car  is always full. People get off and  new people get on, so the car is always full.

I love the analogy of the train ride. I imagine the "C-train". I see a car full of people, some standing and holding those overhead straps. The buzz of conversation is loud. Then the train lurches and everyone falls silent for a moment, remembering that we are all riding the C-train and it's moving forward...again.  We look around and catch each other's eyes for just a moment, just long enough to recognize the solemnity and the fear of the moment. Then we all resume, the buzz of conversation building again. We might have been interrupted, but we will continue.