With a Little Help from my Friends

“Nothing worth doing is completed in our lifetime,
therefore we must be saved by hope.
Nothing true or beautiful makes complete sense in any context of history,
therefore we must be saved by faith.
Nothing we do, no matter how virtuous, can be accomplished alone, therefore we are saved by love.”
– Reinhold Neibuhr

I have found that I cannot fight this stage 4 lung cancer fight alone. I am so interconnected with others, and during this cancer fight I have come to understand how important a strong support network is. I would not be able to do all I do and I am so thankful to the family, friends, caregivers, medical professionals and community that have come forward to provide so much help and so much love and so much support. I am constantly grateful for this.

Which brings me to another amazing thing in these days of miracles everywhere. Dreamed up by the  Dragon Women of SurviveOars and taken on with friends and many others on their “subcommittees,” is the:

FIGHT LIKE A MOTHER FUNdraiser

Saturday, March 3

9am – 1pm

Tidelands Park in Morro Bay

This event will have Dragon Boat tours (very fun, very powerful), yoga, live music, a drum circle, massages, raffles and silent auction, food, face-painting and balloon animals. It will also have resources on lung cancer and the family support group we are trying to launch on the Central Coast. For updates, more information or printable fliers, click the Fight Like A Mother Event tab above.

As this is a fund-raiser for our family and our fight against cancer there are opportunities to sponsor or donate. Monetary donations may be made at any RaboBank branch to the account “Juliane Mittman Benefit Fund” or sponsorships are available by calling Sabrina (805) 528-1649. To volunteer, donate action items or more information, call Sabrina at the number above or Marian at (805) 528-5208.

Special thanks to these early sponsors:
Crizer Construction
SLO Roast Coffee
B & B Garage Door Service Co.
Central Coast Body Therapy 
Village Children’s Center Parent Committee

I am not involved in the organizing of this, but agreed to put it on my care site and this Fight LIke a Mother blog. I know many of you have asked what can you do and this is a perfect opportunity if you wish to help support our fight.

I am happy to spread the word as so many are working so hard on this. Besides raising money for our family, I see this event as an opportunity to spread the word about lung cancer, its lack of adequate funding and the rise in younger women non-smokers worldwide. It is also an opportunity to spread the word and organize a group to support parents with cancer in our area.

The quote above was a meditation in our church bulletin on Sunday which really struck me, especially the last sentence. “Nothing we do, no matter how virtuous, can be accomplished alone, therefore we are saved by love.” So true.

Or as the Beatles say, “I get by with a little help from my friends.”

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Buying New Hair

Bald is beautiful. I think so. I can handle my new bald head. It is a rather nicely shaped skull I have sans hair, I am surprised to find out. I am not afraid for other people to see my cancer fight. I welcome conversation. I am prepared to go out into the world a hairless testament to what cancer cannot do.  My daughter disagrees. Completely.

On the recent day when my hair all fell out, except for a mohawk strip down the center, and I went bald, my four-year old daughter had finally had enough. She had enough of  mommy being “sick” as everyone says when they ask about her. She had enough of moving to where mommy needs to get treatments which make her more tired and sick. She had enough of me looking, well, not like me.

“I do not like your hair bald! I do not like your hair short! I like your hair long like you had it before!” my daughter is wailing this from the bathtub while I am shaving what little stubble of  hair I have left. My goal is a gleaming, soft, hair-free dome. I am intent on having a good-looking bald head. I turn from the mirror to look at her. She is sprawled face down floating half-way suspended in the warm water meant to soothe her and she is crying.

“Before” meant before my diagnosis when I had shoulder-length brown hair I could put into a pony-tail. I cropped it very short a few days before I was to start a chemotherapy regime, on the advice of a well-meaning nurse, who said it was easier to lose your hair if it is short. It is. However, a change of doctors and treatment options meant I didn’t need to cut my hair, but I found the short-cropped hair easy and also a symbol that I was fighting cancer and my life was now very different from before.

I consulted an onco-psychologist I work with who specializes in children dealing with cancer. She said the anxiety of seeing mommy without hair is a physical manifestation of the disease. It is a real, daily symbol that all is not well. Baldness is something my child can point to that says, “this person is not well, this person is sick.”My daughter’s reaction to my bald head made perfect sense. Mommy does not look like mommy. This is worrisome. Will mommy be able to play like before? Will she be there for me?  She does not look like other Mommies, I want to protect her and distance myself, at the same time when we are out in public.

I also felt that my four-year old was letting out her anger about our entire situation at my bald head so I encouraged her to express this anger. She seemed mad at the doctors for doing this to me, mad at me for letting it happen and mad that she was living four hours away from her beloved preschool, friends and community cooped up in an apartment in Los Angeles while mommy is here getting sicker. My daughter stormed a couple of days and my husband and I tried to help her talk it out as best we could, recognizing and validating her feelings. It was decided that “new hair for Mommy” would be a good thing.

I had been given the name of a great “hair-replacement” a.k.a wig shop in the LA area, called Godiva’s Secret, that provides full support services to the never-wigged and newly bald as well as those who just would like to change their hair. The selection is high quality and stylish. My husband, daughter and I went and tried on at least thirty wigs in all colors, lengths and styles. My daughter wanted all of them, I settled on two. My favorite is a long-haired one that she picked out. It was my old color and style of hair before diagnosis, only longer, fuller and much nicer looking.

After we left the store we hit the town, both coiffed in our new ‘dos, heartily eating at a delicious Indian restaurant we found by chance. The waiters making a big deal over her hair. My daughter’s eyes were sparkly, happy and lively. “You look good, Mommy,” she kept saying. OK, its worth it to wear a wig. It’s fun, too.

For a great book about helping kids through a mother’s going bald, I am using Sue Glader’s book Nowhere Hair  to help explain cancer for kids 3-10. The book, for us, addresses the situation very well.

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Mohawk Momma

It has been fifteen months since my diagnosis of stage-4 metastatic lung cancer. I still can barely believe I have the disease, despite so many treatments and upheaval to our lives. How can this be? I am an otherwise healthy, active woman in my 40’s with a four-year old daughter. I’m a non-smoker.  I eat organic, I have a toxin-free house. I do yoga. This isn’t supposed to happen. It HAS happened and some parts of it are quite funny. The universe likes a good laugh, I’ve decided.

On December 20, 2011 a new MRI brain scan showed I had six new metastases to my brain. A more detailed scan showed over twenty, possibly fifty were there. What where my options? Whole brain radiation. The thought of having my whole brain bathed in gamma rays was beyond where I wanted to put my tender upstairs tissue. After researching far and wide and talking to a variety of cancer professionals, it was apparent whole brain radiation was the way to go. Ironically, although whole brain radiation scared me the most, it is the most effective treatment, 80%, with least amount of side effects. It is also the treatment with the most long-term studies I have undergone as yet. I agreed to fifteen treatments of five minutes each and started on December 30.

I knew my hair was going to fall out from the brain radiation. I was told that soon after day 10 of treatment it would all fall out in 24 hours. I was prepared. No more fuzzy scalp left over from the chemo I had in the fall, finally a nice bald pate. Something easy to maintain. What could be easier than no hair? On Monday morning my hair all fell out in the shower. My hair was very short anyway from the chemo so it wasn’t traumatic for me. Like I said, I was prepared. It is always better to be prepared. After my shower, I stand in front of the steamed mirror and wipe a space to see my bald head. I am greeted by my image with a perfect three-inch wide mohawk down the center of my head, the rest bald as a cue ball. Ahhh? This was unexpected. It is unexpectedly funny to me.  I call my husband and four-year old daughter. “Want to see something really funny?” I call from the bathroom. They come. I open the door, “Momma has a mohawk.” Wide eyes, the is a skip in the air, then the two of them crack up laughing.

Now what to do? It is a holiday, no barbers are open and I have to go straight to my treatment appointment (no holiday there.) So I put on a hat and leave to go, thinking “I’m sure they’ve seen this before, no big deal.” I arrive at the treatment center and go back to the back. John and Silvia are there, my favorite techs. As I take off my hat, I say to them, “I’m sure you’ve seen this before…” but they are doubled over laughing and shaking their heads no. “Did you do that?” John manages to gasp. “No, you did,” I say. “It looks cool, people pay good money for that. You should keep it.”

I talk with my radiation doctor. It was just the programmed field of radiation needed that produced such a fine display of punk-rock hair, he explains. Not a cosmic joke. Another patient being treated right now had the reverse issue. No hair in a stripe down the center. “You remember, like Peter Gabriel in early Genesis, a reverse mohawk!” says my doctor, excitedly. He is my age, a hipster and also the Medical Director of the entire department. I think he’s about to say, “Cool.”

Needless to say, the ‘hawk is gone, shaved with the wind. Mohawk Momma was a brief phase I went through, although I did consider getting a line of Tibetan characters tattooed behind my ears. In the words of my brother, “What, you shaved a perfectly good mohawk?”

The universe has a good sense of humor.

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Being Back

Another Move

This blog was resting. It was not abandoned. From my last post to now I have been concentrating all energies on my stage-four metastatic lung cancer fight. Since my last post I have had thirty-five rounds of radiation to my lung, three months of chemotherapy, fifteen rounds of radiation to my brain, and two household relocations for a total of three months. Throw in the holidays and a busy life with a four-year old and a resting blog is the outcome. That is OK, life happens. Life with cancer happens even more intensely. I have learned from the journey, so much. I am inspired again to share what I’m learning to help parents raising kids who are battling cancer themselves and to create a community. Its good to be back.

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Taking Time to Rest (Why is it so Hard?)

Time. Time seems never enough. I come into the day ready to start, with things I want to do, accomplish, create and then time slips past and I too often find myself wondering what happened. I wonder what happened to the past few weeks that I could not write, did not write. I realize I was living: birthday parties four our four year old, relatives and friends in town. Living with cancer, I can’t do it all. I can’t always control my energy levels but I can choose when to be present and when to let things go. There are still those days when for no reason that I can see, I do not have the energy to meet the demands of the day. About every third day or so I feel heavy, slow, muddled. Some days I lay on the couch or on my made bed reading, sometimes writing. Sometimes I feel I need to be productive, so the enforced rest period is frustrating.  Sometimes I can accept the rest period as necessary and healing. I switch my focus to the opportunity rest gives.

Rest. Rest is something I rarely did before cancer, and when I did I felt guilty. There was always so much to do, either as a busy professional and or as a busy mom of a busy preschooler. Even now I experience guilt at times, especially when cancelling plans. I know from healing work that my body is demanding rest and I need to respond, it is the right thing. I am so used to “doing” that I have to breathe deep and tell myself to “be.” I remind myself that each time I embrace just “being” with whatever rest I need, I return refreshed, rejuvenated and renewed.

It seems odd that it is hard to rest, but for some of us, this is so true. We get frustrated when people say to rest. For me it was because I didn’t really know how to actually rest. I also didn’t know there were so many ways to rest. If you are goal-oriented, think of rest as just as important a task as whatever you want to accomplish. Set your intention. My

Back Bay Pathways

Cool, shady paths

intentions are usually to restore, shore up, be vital and present, and to gain strength to keep fighting cancer. Some ways I have found to rest: gentle yoga, walking in nature, five minute meditations, funny movies on Netflix , reading fiction (can be seminal or trashy but should sweep one away,) closed eyes relaxation, guided meditation, listening to favorite music and of course, sleep. It is OK to sleep in the middle of the day, during a social event or any other time. Really.

What about all those things we need to do? I know we all know we need time for rest, but there is always something that needs to be done. “I can’t take the time,” many of us say. As parents we need to make sure everyone is well fed, off to their activities and that the house is not a complete disaster. How do we simplify when we have such a need to take care of ourselves in every sense, knowing we will have hours or days when we simply cannot function?

Other parents have done this before us and have generously shared their ideas. I like the series of posts from blogger Steady Mom for once a month cleaning. She makes a very good case and gives advice to start right away. We all know there are times when we just cannot do it, despite our best intentions. We may be in recovery from a surgery, tired from treatments or feeling completely unmotivated. A big help can be found in many U.S. communities. Cleaning for a Reason is an organization that provides free housecleaning for women with cancer.  Also, do not forget that friends and family want to help but often don’t know what to do. Giving a specific project around the house or cleaning that needs to be done may be just what they were looking for to help you out. A team approach is good to avoid burning out any one caregiver. The Dana-Farber Cancer Institute has a great scheduling guide to be done by someone other than you who can organize the masses on your behalf.

Self-care, rest and relaxation are not luxuries for those of us who are cancer-fighters, they are as necessary as following our treatment regime. I remind myself many times a day that I need to do take this time for myself. It is important, it is part of healing. It is part of being strong to meet the many demands on us as parents, especially our kids’ need for our love and our presence. I tell myself that after I post this, I can settle in with Netflix tonight after all are asleep, no guilt, no playing catch-up. Sounds good.

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Inspiration from Cancer’s Journey

Mother’s Day has passed and I found myself so happy for each minute I could be with my daughter and husband, play with them and tell them how much I loved them. Everything we did seemed magical. Even the weather turning cold, whipping our hopeful spring dresses around our bare legs as we tried to walk on the pier over the beach seemed heightened and funny. The blasts of cold, Pacific ocean wind were a new challenge to forge into, something that could be withstood, a force to overcome…we ran back to get warm, shivering and laughing.

I couldn’t imagine a day like that when I heard my diagnosis for the first time: stage 4 lung cancer. Thoughts of me quietly, slowly and painfully disappearing from my own life were in the forefront of my mind. I didn’t know what to expect, certainly not that seven months later I would be almost “cancer free” and living my life again. Yesterday I spoke with a friend, a cancer buddy. She’s my age, a mom, a person I got to know because she has cancer, too. We talked about her good scan results, when she will go back to work, new chances she is taking, her hug and chat with Steve Tyler after she sneaked past a guard at a filming of American Idol. In other words, living life again.

We are fitting back into our previous lives, but we are not the same. We have fought, cried, shared, trusted and became vulnerable and helpless in the face of the disease. We have also found more strength then we knew we had, met incredible people we wouldn’t have and forged a new worldview that links us closer to what is truly essential. We have battled, we have changed, we have learned.

Judy who blogs at motherswithcancer has posted a list of things she’s learned from cancer. This is a list that has been in my head but has not made it into words. I am grateful Judy has done the work of putting it down for us all. If you are newly diagnosed and scared; or have been fighting, surviving and thriving for a while with cancer, these words are true, hopeful and helpful. Here is her list:

  1. You’re stronger than you know or ever imagined. People ask me how I get through this, and the answer really is: I have no other choice. I can either crumble (and I do sometimes, but I’ve always been able to go forward again) or I can accept this as a part of my life and find happiness wherever I can.
  2.  Faith is a beautiful thing. The times when I’ve felt closest to God are the times when I’ve had the easiest time with all of this. God really is with me all the time; it’s just that I don’t always accept or acknowledge it, or my anger against God is so fierce that I harden my heart against Him. He always finds a way through, though — sometimes through the grace of other people — and when that happens, miracles happen, even if they’re small miracles. I thank God for being with me through all of my troubles.
  3. Despite everything, life is beautiful. The sun is shining today, I have a wonderful family, I have amazing friends and a tremendous church family. I have many blessings in my life, even though I do have a sucky disease. The blessings in my life are part of what gives me strength.
  4. People can and will surprise you, both in good and bad ways. I try not to judge them for that anymore because, as some smart people have told me, “Wounded people wound people.” I am finding that I have more and more compassion for those you would think I would be railing at.
  5. Lean on friends, family members, church family. Lean on people. Let them know when you’re hurting. Many times, even just telling others your problems releases burdens that you may have.
  6. Related to number 2: God is great and can get you through anything. Also, miracles can happen. Never forget that.
  7. If you’re not feeling well physically, it’s difficult to feel well emotionally. I often forget that when I’m not feeling well physically. If I would remember that, I think things would be easier for me at those times.
  8. A prognosis is simply a history of what has happened to people before you who have gone through the same or a similar diagnosis. Prognoses are not set in stone. You may be the small percentage that lives way beyond a prognosis. My way of dealing with the prognoses that I got the first time I went through this? — honestly, I try to ignore them.
  9. Keep the faith, and keep your hope. They are both beautiful things and will help you in the difficult days of your illness or whatever burden you are carrying.
After the devastating words, “You have cancer” go off like an atom bomb in our life, there is hope. But more than hope, many good things can happen because of the cancer experience. As Maya Anjelou says in the title of one of my favorite books: “Wouldn’t Take Nothing for My Journey Now.” Its true. I wouldn’t take nothing for my cancer journey. I’ve learned so much. 
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Writing and Healing

When I was first diagnosed with stage 4 lung cancer, I knew nothing about what treatment I was to have, what to expect or what would happen next. I knew I had cancer in an advanced stage with metastasis to my bones, lymph nodes and brain. I had to make a number of decisions about treatments as well as hassle with the insurance company and organize life for my preschool daughter.

What to do? I started energetically writing. I just wrote. I wrote prayers. I wrote curses. I wrote anger. I wrote thanks. I wrote fears. I wrote defiance. I wrote to my daughter, my husband, my family, my friends. In my shock, severe stress and sleepless nights I wrote about what was keeping me awake. I wrote on a computer. I wrote on a caring site.  I wrote in the “notes” section of my phone. I wrote on scraps of paper.

I needed to write reality now that I didn’t understand reality any more. I was making it up and re-forming it.  I was leaving something behind in case I wasn’t here anymore.

What I was doing, I came to find out later, was healing. By pouring the words out I was getting them out of my head and onto the paper. I was, in a frantic and latent way, recreating myself. As I see it now, I was also defying death and oblivion by writing and putting my essence down for posterity. “I count,” I was saying to cancer, “You can’t take me from me.”

Others have found this path, in fact it is well-trodden. Healing through the arts is well established and many integrative oncology practices have art, drama and writing therapies as complementary healing practices.

Sharon Bray, Ed.D is an author and educator who has led many years of classes helping people to write through the cancer experience. She has a blog with weekly prompts that can start anyone writing called Writing Through Cancer. She has also written two books to help with the writing process A Healing Journey:  Writing through Breast Cancer (2004) and When Words Heal: Writing Through Cancer (2006). Sharon shared the following with me:

JM: What are the benefits of writing when one has cancer?

SB: Writing can be therapeutic for anyone, but during cancer, it offers a way to make sense out of the chaos of emotions a cancer diagnosis creates.  A journal or notebook is a little refuge, a sanctuary, a place to spill out all we feel, and then, as we re-read, to begin to make sense of it.  In a writing group, such as those I lead, the raw, emotional writing quickly becomes stories or poems, and as the group members share their writing aloud, an extraordinary community is forged.  We are joined by cancer–and we realize, as we hear the words of our colleagues, that we are not alone in what we feel.

JM: In your last blog post you chose fear as a theme to write about. Most of us live and deal with that emotion daily. Are there other common themes that writers seem to share, when writing the cancer experience? How does this help to write about a theme?

SB: Shock, fear, anger, remorse, regret–all of these surface at one time or another during the cancer experience.  Writing helps release those emotions, getting them “outside” the mind and body and onto the page.  Keeping negative emotions locked inside is unhealthy–writing gives voice to all we feel, and as we write, we discover that there are insights, other emotions, like hope, love, concern for others that also will be expressed.

JM: If someone wants to write, but thinks “I don’t have anything to say,” what advice do you give to help them start writing? 

SB: I offer prompts–writing suggestions–from just about every corner of life and the cancer experience.  I also say that if a prompt doesn’t “do anything” for you, then just write about anything.  Keep the pen (or your fingers on the keyboard) moving.  Don’t stop to edit or read it over.  Even if you begin with “I don’t have anything to say…” and keep writing that line over and over, something WILL open up–and you’ll have a “door in” to something that wants to be expressed.

JM: Some people may hesitate to start writing because they think they don’t write well, that they are not good at writing. Do you need perfect grammar to write through cancer? 

SB: Oh my goodness, no!  In my groups, I never see what is written–there’s no red ink, no corrections.  What is written is the writer’s — maybe it gets refined and polished sometime later, far down the road, into a poem or story that needs an editor’s eye, but never in the healing process.  Just write.  Push that internal critic aside.

JM: Is there a writing experience that got you through a particularly difficult time? How did it help you?

SB: I’ve always written, even as a child–but there was a particularly difficult period of my life when my husband drowned in an accident, and I became a single mother and a widow overnight.  I filled dozens of notebooks with my questions and the roller coaster of emotions.  It helped–in those dark, lonely nights, I found solace by writing all I was feeling.  Gradually those emotional entries began to change–and I found poetry among my feelings and words.  It was tremendously important time — and it also influenced the writing groups I lead today. 

A special thank you to Sharon for sharing her wisdom and for doing this project that we can all benefit from. I have been using Sharon’s prompts from her site and I find them extremely useful to prompt me to heal in places I may tend to avoid on my own. Have  you had a healing experience through writing? Please share with us!

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