Battle Fatigue, MIA and the Fabulous Fundraiser

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The last two weeks have been hard—in and out of the hospital, and crisis mode. Mostly what I have hated about it is the way I feel like I have dropped out of communication mode. Even today, trying to get this post out, I am low on energy, and I don’t know if it is an infection, the antibiotic or low red blood cells and barely have the energy to get through the most basic of tasks. But on Memorial Day, the SCCA is short staffed and we made the decision to wait until tomorrow. I hope we don’t regret it.

To catch up, we definitely learned that my body does not like the chemo drug, Cytarabine. It gave me a two day fever following the hospital exit on May 8th.

Five days later, I went in for my 9th spinal tap—not 5th or 6th as I originally  said, where Cytarabine was injected directly into the spinal fluid. Anyway, I felt fine after—for awhile. Met up with friend Sean Ochoa and the girls, ate dinner. And then, abruptly, I didn’t feel fine. “Must go” I whispered to Steve. By the time we got home I was getting blinding pain from any source of light, even the night light. I literally could not do anything but crawl into bed and shield my eyes. The sharp stabbing pain intensified the next morning; making me yelp out loud when contacting any kind of light. To function at all, I had to wear two pairs of sunglasses and an eye patch over the worst eye. The doc suggested steroid eye drops. After dropping them in, hour by hour, things slowly improved, until I was able to go out into the day with only one pair of sunglasses. A few more eye drops over time  and I was over my 2nd chemo reaction to Cytarabine, a drug that is known for this photosensitivity pain.

Funny thing is, every time we called the hospital, looking up the side effects of the drugs seemed to be our job. Their job seemed to be to freak out, assuming infection, and want us to come in immediately. When I become a transplant patient, we won’t muck around. If they want us in, we go. But for now, it does seem worth it to argue back an immediate trip back to the hospital over a drug interaction that they should know about. 

Anyway, three days later, May 17th, was the date of the Fabulous Fundraiser. I will come back to this amazing event. While all of that good energy flowed my way, I found myself in a sudden and immediate need for both a blood and a platelet transfusion. So, on that same night, when the community gathered, Steve and I waited for hours while the blood products dripped slowly into my body. Wait, that’s not meant to sound miserable. It really wasn’t. We went home late and assumed I would feel better.

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But by Saturday, the next day, I developed a Neutropenic Fever(meaning my white blood cells were at zero, so any small thing could become very dangerous quickly), with a resting pulse of 120, and I was admitted into the hospital.Because my immune system was at zero, they were very concerned. After a battery of testing turned up nothing, the docs let us go home the next day with an IV antibiotic. Only problem was, it didn’t work. By Sunday—yes the next day—I was back into the hospital. There I had more tests to find the source of my twice-daily fever spikes. They tried hard and unsuccessfully, to find the source of the infection. An abnormal CT scan led them to suspect pneumonia. but after a Thoracentesis to withdraw some of the fluid from the lung, which came up negative, they ruled it out.

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In the middle of all that hullabaloo, my body starting making white blood cells again, something I do not take for granted because there are people on the oncology ward whose bodies don’t do this easily. I wasn’t tethered to Herman, the IV Pole—and so acknowledging my growing restlessness, the last couple of days they let me go outside on walks with Steve, on the UW grounds, which were lovely and rich and graced with barn swallows flying low all around us and big stately trees that sheltered us from the rain showers.

But by Friday, I was over it. When they wanted to do a swab for upper respiratory infection which would have put me into isolation for 24 hours, we argued that they could do the swab and then release me immediately to do the “isolation” from home. We were relieved when they agreed to this. Antibiotics in hand, we gratefully left the hospital. 

imagesThe fevers have not entirely gone away. Before I sent this post, we made our trip to  to the SCCA. The numbers  (all my blood work) show everything looks good for the next round of chemo, 3A. It is currently scheduled to start  this Sunday-a 4-5 day session, . The fact that we haven’t found the source of fevers didn’t bother our doctor particularly, she told us that in 60 to 70 % of the time, they find nothing to explain them. She took me off the antibiotic I was on, which was packing quite a “feel bad” wallop. She also used the word “battle weary” to describe people in my stage of treatment. “That’s a good description,” I told her That’s exactly how we feel.

Funny how the spells between chemo remind me of the fragility of our lives: the red blood cells that give us the simple and precious energy and oxygen to carry out our days. Platelets keep us from bleeding out every time we cut or bruise ourselves. White blood cells are like a coat of armor that allow us to go into public. Lose any of these, and this past two weeks, I have lost each one temporarily, and you can’t function. One drug interaction and I am suddenly blind. A normal temperature is something precious to experience. No chills, no sweats. Just good old 98.6. It never looked so good.

And now that mine are just about gone, when is the last time you stopped and really appreciated your eyebrows and eyelashes? Such marvelous things we take for granted.

Meanwhile, while we essentially “dropped out” with all of the above, a most wondrous event unfolded on the island. Daughters Mariya and Elena went to the island, with a mixture of nervous anticipation and eagerness (sorry I don’t have any photos of them but there is a youtube link below); knowing that they would be received by the full force of island community; feeling a combination of dread and excitement to be back at our island home for a few days, wanting the fundraiser to be successful and fun;  wanting to be truly present with people . . .  it was a tall order and they knew it. But the alchemy of the night was in a word, astonishing, and something our daughters will never forget. Steve and I got enough photos and movie clips to at least get a taste of it it in remote form. But what we felt was like a like a beam of healing light radiating from a small island in the Salish Sea. No matter where we were: blood transfusion, back at the cottage, at the hospital, it caught us and lit the way. Beautiful, overwhelming, awesome–all words fall short.

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There is no way for us to adequately express our thankfulness and appreciation. We are, all four, humbled, awed and understand that this is something to be paid forward in the World. A gorgeous Prayer Wheel sits on our table, written blessings around it like leaves from an autumn tree. Our community, family and friends, we bow in deepest respect and gratitude to you.

P.S. These are the lyrics of the song For All the Good People, This was my message to all assembled and all others who are part of our extended community and family., The two YouTube clips are of the daughters delivering my message and the community singing the song.

. http://www.youtube.com/watch?v=LjVfmvIhDYU  and http://www.youtube.com/watch?v=OIKT68T6hm0 K

Shann’s intro to “All the Good People”

***   I fell in love with this song many years ago when I first heard it on the radio, sung by Fed Holstein, a grand old folk artist who loved to sing with people in friendly gatherings.

This seems like a perfect opportunity to share it with you. I changed a few words to make it truly a message from my heart to you.

In ways you know—and in ways that are invisible—YOU are the place I come from—and I address all the people in the room and all the people not in the room who have created Community and Friendship with me. As a family of travelers, we have often received extraordinary insights and kindness from chance encounters and powerful wisdom and generosity from those who have rarely left their home.

These days, I am communing primarily with The UW Medical Center, the Seattle Cancer Care Alliance, Seattle neighborhoods and parks, my amazing family and the Great Spirit. Your strengthening, comforting and wise words come to me via the computer—it is my gateway to the big world and your life. I am blessed by this, and grateful.

Thank you. Two small words will have to do for the immense feelings in my heart. I know I speak these words from Steve, Mariya and Elena just as strongly as we have been washed by your love and friendship.

This is a song for all the good people! That’s you! Sing it to each other.   ***

For All the Good People

Original lyrics by Ken Hicks, sung by Fred Holstein

Chorus: This is a song for all the good people
All the good people who touched up my life.
This is a song for all the good people
People I’m thankin’ my stars for tonight.

This is a song for all my companions

Who knew what I needed was something they had

Food on the table, a heart that was able

Able to keep me just this side of glad.

This is a song for all of my good friends
Who shared up my time, and good times we had
We sang round the fire and shared no competition
Each knowing the other was a good friend to have.

This is a song for all the travelers

Who passed through my life as they moved along

Gypsies and tinkers, ramblers and thinkers

Each took the time to sing me their song.

This is a song for all the good people
Singers and healers I dreamed of at night
some helped in all ways,
some helped in small ways
Some always told me I was doing all right

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11 comments on “Battle Fatigue, MIA and the Fabulous Fundraiser

  1. You are truly a beautiful person, Shann and a lovely writer also. Thank you for giving a report to us, even in all your pain. It means so much to me and you have already given of yourself so much back to all of us.
    Thank you and bless you.
    Shirley Zyph

  2. I am so glad to hear your words, and see Mariya and Elena, and see your community singing your song. Beautiful, enriching, real. Much love to you all.
    Ruth

  3. It is so hard to read about your ongoing pain and trauma….but you must be SO proud of those lovely daughters and of the community outpouring…hoping that this will somehow sustain your spirit…thank you for making the effort to communicate and remind us all to count our blessings much more often… Love, Carol

  4. I feel so sad that you are going through so much trauma and suffering, dear lady. Hang in there! I am sending you healing prayers often. I cried as I watched the beautiful outpouring of love and support from your Island community. You are SO loved and respected. Your brilliant light has touched SO many lives. What you sow, so shall you reap. Hugs and love to you and Steve, Meredith

  5. Shann,
    I stumbled across your blog as I did research on a 1995 traveltime van. I dream of traveling across America experiencing it at my pace and at a reasonable cost. My brother offered to give me a 1995 Traveltime van (same color as yours I believe), but the more I research it, the more I conclude it isn’t big enough/designed for fit and sleep my wife, son, and I.
    Anyway, in the meantime, I have read some of your blog entries. I am sorry to hear you aren’t feeling well. From a stranger, let me tell you that I am inspired by your travels and positive attitude. I am more committed now than ever to traveling economically in a small RC/camper and seeing some of your pictures is the reason for this commitment…. it can and should be done.

    thanks and feel better-Scott Webb

  6. Oh Shann, It was indeed a wonderful night! And your daughters shone like the stars in the heavens. You are in our prayers prays every day ~ W Date: Tue, 28 May 2013 21:01:10 +0000 To: weyshawn@hotmail.com

  7. Hello dear ones. Drapeau forwarded the blog that Cathy McQ sends him regularly. You are in my (our) thoughts and we are so blessed to be your friends. Shann you are an incredible woman, and an amazing writer.
    xxxxxx, love, oooooo

  8. Pouring on the love! You are embattled, and all we can do is pour on more love. So here it comes, my friend.
    Thought of you and Steve as I walked the woods in Sisters yesterday morning. It smelled so great after rain fell on the dusty trail and Ponderosas. Please come do that again with us. xxoo

  9. Shann — Even in this time of incomprehensible difficulty, you are giving the amazing gift of teaching us to appreciate all that we have and every day that we have to appreciate it. Thank you so much.

  10. Dearest Mama and Papa,
    Such a lovely post – thank you for finding the articulation to encompass the past few weeks. I keep telling people it feels like a crazy game of the boardgame “Sorry” – 2 steps forward, 1 step back, 3 steps to the side, 4 steps forward, 2 steps back….But through all of the intensity, you are such a Mighty Warrior. If cancer knew what was good for itself, it would leave you alone! It was a difficult juxtaposition, being your daughter at the Fabulous Fundraiser and reveling in the beauty and love and joy of life, while also hurting in my heart for your parallel ordeal that weekend. Two weeks later, and I am still high off the energy from the fundraiser. I have never been so hugged and felt so loved. My cup truly runneth over. To my family and our community, from Fairbanks to Friday Harbor, thank you thank you thank you for being who you are in the world.

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