Tuesday, September 24, 2013

Vegas


I am by nature not one to entertain depressive thoughts, at least not for long.   I have always felt that the best anti-depressant is action.  So, when I was diagnosed with cancer over a year ago-  I began to do an enormous amount of researching.  I made compulsive lists of things to prepare for each treatment.  I rearranged my bedroom anticipating the need for a comfortable place to heal.  I bought art supplies preparing to meet trauma head on with prismacolors and permanent markers.  I also found support groups, both in my community and online.   Breastcancer.org has online forums organized around types of treatment, receptor status, stage, question, etc.  I joined a group of women who all started chemotherapy at the same time.  

I can not overstate the importance of these women in my life.  Anytime I had a question, I would post it and find answers.   They would validate the crazy feelings that were at times overwhelming and help me feel sane again. (I typed many a post while sobbing).   They would offer support and make me laugh at the absurdity of our situation.  And when so many of my "real" friends all but disappeared, they were there and ready to offer me a big virtual hug whenever I needed it.

At one point, when things were super rough, one of the women comforted another woman with a promise... that next year, we would meet in Vegas.  Exactly one year from the month that we began chemotherapy, fifteen of us packed our bags, boarded planes from all over North America and Canada and met in Las Vegas, Nevada for a long weekend. 



I wondered on the flight what it would be like to meet these women.  Would it feel awkward?  Would I have things in common with them aside from cancer?  Would they understand my weird sense of humor?   Any fear I had was quickly put to rest.  These women were amazing - and I felt so proud to be in their company.  We talked about how our club had the worst initiation rites of any club we had ever heard of.   In many ways, I was shocked at how much it felt like I had always known these women.  But, I guess it makes sense.  We have shared a traumatic history and through that, our friendship has intensified in ways that most can't understand. 

I also felt, for the first time in over a year, normal.  I was surrounded by fourteen other women who understood.  I laughed when one of my friends tried to play the cancer card to get an upgrade at the rental car counter.  I showed my scars without feeling I would need to take care of the other person's reaction.  I could talk about cancer without worrying that I was boring or too self indulgent.  I felt like I could breathe- and I am beyond happy that I went.  I am looking forward to meeting again next year. 

Coming back home was difficult.  So much of the trauma of the last year has left me anxious and broken - and yet I often feel that there isn't time or space to really co-exist with those feelings.  I instead find ways to pretend that they don't exist.  Last week on Wednesday, I became emotionally overwhelmed.  I had no idea what triggered the feelings.  I thought perhaps it was all of the emotions of this past month - the death of Zinn, my amazing trip...  It wasn't until Saturday that I realized that it was exactly one year ago on Thursday that I had my first chemotherapy infusion.  Although I may try to repress these feelings, my psyche has not forgotten.


Saturday, September 7, 2013

My Cat

I haven't written a post in a while.  I feel a strange mix of emotions regarding this fact.  When I first began writing this blog, thinking about cancer was all I did.  I was constantly researching medications, research trials, and symptom relief and I was making a lot of art to cope with the overwhelming nature of being a cancer patient.  Today, I find that I am back to being overwhelmed with the "normal" day to day rhythm of living.  And I guess that is something to be thankful for.

But there are moments where I am reminded of my status as survivor.  It would be nice to say that these moments are infrequent, but in actuality, they happen many times a day.... the doctors appointments are still frequent, the lingering side effects of chemotherapy continue, the fists full of vitamins, supplements, and medications that I take every evening, and the fears of recurrence.  And although I try very hard to use any and all defense mechanisms to keep thoughts of death at bay - they are still quietly present.

This last week, death came and took my beautiful cat, Zinn and broke the hearts of everyone in my family.  The death of a pet is often the first experience that a child has with death.  And when your family has been struggling with a life threatening illness, this concept can be extremely provocative.  I knew that I needed to be careful with my children.  I needed to find ways to talk about the death of Zinn honestly, allow space for mourning, and discuss ways to move through grief.  Although I am not planning on dying until my children are old with children of their own, the way that our family handled Zinn's death felt beyond just important. 

My husband called to tell me that Zinn had died.  He was at the vet office. I realize that my husband's insistence that we try everything we could to save Zinn had a great deal to do with what an amazing friend Zinn had been to him, but also might have had a small part to do with how much my husband wanted to feel he could protect his family from death. One thing that cancer has taught me is the importance of making decisions based on what I value.  Although I have hardly any vacation days in reserve, I needed to be with my husband.  So, I left my office and drove directly to the vet office. We both said our goodbyes, I kissed Zinn's forehead and stroked his paws, we made arrangements for Zinn to be cremated, and then my husband and I went home together.  We lay in bed in each others arms telling stories of adopting Zinn.  We talked about how frightened we were of bringing our daughter home from the hospital, since Zinn was always a bit wild.  But Zinn was amazing with our children.  He adored my daughter and if she cried, he nipped at our heels until we helped her.   We talked about how to tell our children. We cried.   My husband wanted to go to the ocean.  And since the ocean is my healing place, it seemed like a good idea. 

We picked the kids up from school and told them the news as we drove to the ocean.  My daughter was extremely distraught.  My son didn't quite understand.   At the beach, we wrote Zinn's name in the sand... we drew pictures of cats... we shared stories... and we expressed gratitude for having such wonderful family member.
  





11 years ago, Zinn had a terrible reaction to Ketamine, the anesthesia they gave him during the neutering process.    Zinn was paralyzed and blind when we picked him up from the veterinarian.  The vet couldn't tell us for sure what might happen.  We were hopeful - and we were able to nurse him back to complete health.  I feel so lucky that we had the last eleven years with Zinn.  I wish it had been more.   My daughter remarked how there are moments where she is so sad and then moments where she forgets. We talked about how those moments of sadness will lessen and will be replaced with all of our wonderful stories about Zinn and how much we loved him.  My son tells me that Zinn will return on his birthday because my son will bring cat treats.  I gently tell him that Zinn died, and won't be coming back... but that we can remember him in our hearts forever.    I will miss Zinn.  My beautiful wild cat.  And one day, when I do die (which again will be like fifty years from now), I take comfort in feeling that maybe Zinn will be there waiting for me. 






Saturday, August 3, 2013

Cancerversary



I had always been lumpy bumpy and so when the doctor found the lump, I was worried - but not super worried.  I hadn't gone for my mammogram because I was breast feeding, and because I was breast feeding, I had convinced myself that I had a certain level of immunity against such things as breast cancer.  I decided to get the mammogram after my son's tonsillectomy.  I only had enough bandwidth for one major issue at a time.  So, once he was out of the hospital, I made my appointment. 

When the doctor wanted to perform a biopsy immediately, I became more concerned.  It wasn't my first biopsy.  I have had several biopsies.    I tried to calm myself by remembering that all of the biopsies to date had come back negative.  Why would this one be any different?  I left the office concerned but within a day, I had determined that I simply had fibrocystic breast disease. 

The doctor called me two days later on Friday, August 3rd.  I remember the kids playing and the living room being too noisy.  I took the phone into my bedroom and sat on the edge of my bed.  And she told me.  "The results came back from the biopsy, and I am sorry.  It is cancer."  She didn't know much more than that, but wanted me to have the preliminary results so I could make the necessary appointments with an oncologist, surgeon, and radiologist for that Monday.  My husband had followed me into the bedroom and was sitting beside me on the bed.  I remember him holding my hand and searching my face for clues as to what was happening.  "I have cancer."  The doctor told me that she felt I would be okay... and that she had seen people in much worse shape than I was.  Knowing someone out there was suffering worse than I was did very little to comfort me.

The tears came after I hung up the phone.  Not dainty pretty tears - but the kind where your mouth is wide open and your nose is dripping and you look like hell.  I felt like I didn't have bones.  That entire weekend is foggy to me.  I remember calling family.  I remember the late night internet searching.  I had no idea what any of this meant.  I just knew that I had cancer.  It felt unbelievable.

Two days later, I met with my first team of doctors.  They stated that I was stage 2 and had lymph node involvement.  They would begin with surgery, then do chemotherapy, and follow up with radiation.  I felt like I had entered some type of weird breast cancer factory.   I decided that because they didn't have any kleenex in their office, that they were not the doctors for me.   My husband made me an appointment at Stanford.  I will forever be grateful.

Unfortunately, Stanford staged me as stage 3.  They recommended neo-adjuvant chemotherapy, then surgery, and lastly radiation.  I remember thinking, "Okay, I will take four months off of work and then things can go back to normal."  I didn't actually return to work until 10 months after my diagnosis - and I am not nearly done with treatment.  I am still getting infusions and have additional surgeries planned for later this year.  I will be on tamoxifen for the next decade.   I live with neuropathy, difficulty sleeping, and pain in my chest.  My joints feel as if I am eighty years old.  And the worse side effect of all is the fear.  Anxiety has replaced the cancer that had once taken up residence in my body.  One minute I will be laughing with my children, and the next I am being emotionally hijacked by wicked thoughts of my own mortality.  

So what do you do for a "cancerversary"?  I have decided that I am going to celebrate.  For if they didn't find the cancer one year ago, it could have spread past my lymph nodes.  I am going to give thanks that I am cancer free.  I am going to spend the weekend with my family making memories traveling to the redwoods.  I am going to honor this woman who never ceases to amaze me with her strength and courage.  

A few nights ago, my daughter caught me crying.  She asked what was wrong.  I told her that I was sad because of all that we had been through in the last year.  I told her that I knew it had been hard on her as well as me.  She smiled and said, "Mommy, you did it.  You did chemotherapy, surgery, and radiation.  It was really rough - but you did it.  And now you know that you can do anything."  Pretty wise for a six year old.  

I want to dedicate this post to everyone who has been there for me this past year.  Thank you to my doctors who entertained all of my questions and treated me like someone intelligent enough to be given the information necessary to make good decisions about her care.  Thank you to friends and family for all of your prayers, positive energy, and words of encouragement.  Thank you for your phone calls, e-mails, facebook messages, cards, and packages.  Thank you for watching my children while I was at doctors appointments or in the emergency room.  Thank you to my family for flying to be by my side, shaving my head, and listening to me cry.  Thank you for the financial support that allowed me to focus on healing.  Thank you for telling me that I am beautiful and reminding me that I am strong.  Thank you to my children for making me laugh and for understanding when we couldn't do all of the fun things I would have liked us to over this past year.  I will make it up to you.  Thank you to my husband for being such a present caregiver, for sitting up with me in the middle of the night when fear wouldn't let me sleep, for dealing with my angry cancer moments, and for loving me through it all.  I am an extremely lucky woman.



Friday, July 19, 2013

Finding normal


"And once the storm is over, you won't remember how you made it through, how you managed to survive.  You won't even be sure whether the storm is really over.  
But one thing is certain, when you come out of the storm, you won't be the same person who walked in.  
That's what the storm is all about."  - Haruki Murikami 

Normal is such an interesting word.  What is normal for one person might feel completely absurd to another.  As a therapist, I understand that "normal" is subjective.  Everything from culture, time, and individual experience can color our perception of what is "normal".  And sometimes what we think is normal, can often be anything but normal when we are given some space to truly process it.  I have been wrestling with normality for the last couple of weeks...

I tried to think of a metaphor that would make sense for me.  I think some people might think of cancer as a train that is derailed... and that somehow after treatment, the train is placed back on its track and is asked to move forward in the direction it was going before the unlucky accident.  This just doesn't seem correct for me.   I feel like a kidnapping makes more sense.  One day you are just living your life and this sadistic maniac named cancer comes and kidnaps you.  All of the things you were concerned about prior to cancer are immediately placed in the low priority category.  You do what you can in those moments to survive.  You focus on blood counts, treatment options, and recurrence rates.  You are faced with mortality on a daily basis.  You meet other kidnapping victims, finding comfort in someone who shares this experience and you plot together how you might escape. And cancer doesn't just kidnap you alone.  It takes your whole family.

And then one day you are released.  Back to your old life.  After ten months of captivity.  But you are lost.  You aren't even sure about the direction you are supposed to be going.  And you are surrounded by people who don't understand.  They think they do.  But they don't.  They can't. Their conversations feel foreign to you.  In reality you are not really free.  You understand that cancer is lurking... and could decide in a moment to kidnap you again.  Maybe that is why I have this urge to move far way from where I am now.  Maybe then cancer won't find me or my family.  I am a trauma survivor.

There was an article I read in the New York Times recently about anxiety and cancer survivors.  It resonated with me.  I know that I have a lot of work to do to become comfortable with my new life... and even though cancer may linger in the background, I have to learn to shift my focus around the room to see all of the other things in the room aside from cancer.  I need to replace fear based decision making with decision making that focuses on what I desire in this life for myself and my family.    Although I know if I pack up the car and move across the country, cancer will move with me - I also know that finding ways to work less, be near family, and have more space for art and fun are the healthy options for me.  

There is another article about post traumatic growth, which is defined as "positive changes experienced as a result of the struggle with a major life crisis or traumatic event."  The notion that with trauma also comes ways in which our life is enriched.  Perhaps we become clear about our values.  We no longer want to postpone happiness.  I am definitely moving in this direction - but it will take time.

Thursday, July 4, 2013

Moving forward


I haven't written in a couple of weeks.  Radiation was exhausting, and I feel like it has taken me a good month to get my energy back.  On top of this, the family went on a much needed vacation to Santa Fe.  We stopped off at the Grand Canyon - where I hoped to check in with the universe:  share all that I was grateful for, shed some tears about the last year,- but at 108 degrees, it was just too hot.  I did take some nice pictures and enjoyed my family.



Eleven months ago, I found out I had cancer.  Ten months ago, I said goodbye to  co-workers and took time off from work to focus on healing.  I knew that cancer treatment was going to leave me with limited energy.  I wanted to spend the little energy that I had on my family and my spirit.  I feel like all in all, I did a very good job of taking care of myself.  I have been present with the emotional reality but also allowed myself to laugh and stay grateful.  One of the most challenging parts of having cancer was the thing I hadn't even considered - how it would impact my relationships.  Some relationships have become stronger.  Others have almost disappeared.  I read a wonderful article on just this thing yesterday and thought I would share it here.  Someone in my support group the other day said that she has been able to find ways to become friends again with some of those that she lost.  At this point, that seems unimaginable... but I guess only time will tell.  I know I don't want to hold on to being angry.  Not for anyone else -but for myself.  Anger and hurt can feel like poison.  But I am struggling with this. Maybe it is just too soon.

On Monday, I started back to work.  It felt awkward... but how would it not.  I think there are ways in which many of us live our lives in a state of denial - like we are sleeping.  We think we have unlimited time to make our lives what we want them to be.  We have amazing dreams but put them aside as impossibility.  We think we are fine just existing in situations that no longer feel fulfilling because we are fearful of change or think it could be worse.  For many people they live their whole life this way... and then it is over.  Some of us are lucky enough that something happens.  We get shaken out of this sleepy state and are forced to look at the stark reality of what it means to be human.  Our lives are finite.  Postponing happiness creates sadness in the present.   Cancer has given me the gift of clarity ... and I hope that I never fall back to sleep.

Treatment is by no means over for me.  I still have infusions and surgeries and doctor's appointments... but life is returning to normal.  I just hope that I can find a way to create a new more wonderful normal than I ever had before.




Tuesday, June 18, 2013

Papaya Girl


I was diagnosed with cancer on August 3rd, 2012.   One of my most immediate concerns was how my children would fare through this journey.  I have worked hard to create an environment where my children are free to ask questions, explore, and grow into the people they were meant to be.  But how would my cancer impact their development?  How would they cope with seeing me struggle?  How much would I share?  How would all of our lives be turned upside-down?


I decided early on that I would talk about cancer with my children with honesty.  When asked about my hair, my daughter can tell you about how chemotherapy drugs work on fast growing cells.  When she sees me cry, she will swoop in and give hugs and let me know that she loves me.  My three year old son has thrown action figures down my shirt in hopes that "Spidey will fix your booby trapped cancer."    They are both incredibly compassionate and beautiful little beings and I thank all of the stars in the sky that they are mine. 


It hasn't been without difficulty.  My daughter on more than one occasion has come to me worried that because her grandmother had cancer (although an unrelated cancer to the one I have), and I had cancer, that somehow she is predestined to follow in our footsteps.  My children also understand that we must live frugally during cancer treatment - and due to my weakened immune system and lack of energy-  sometimes that means we can't travel, go to Disney land, or sometimes even to the zoo.  The anxiety, exhaustion, illness, and stress of cancer treatment often take me away from the type of parent that I want to be.  I can be agitated, impatient, and despondent.  Although I try very hard to rally - I am not always successful.  Luckily, my husband is a very affectionate and present father who is gifted at making our children laugh.  I hear them sometimes laughing when I am alone in my room - and it makes me happy and sad all at the same time.  But I am doing my best.  And my kids need me to prioritize rest and becoming healthy.


On August 11th, eight days after being diagnosed with cancer, I sent my husband an e-mail with a link to Camp Kesem.  Camp Kesem is a special camp for children that have a family member diagnosed with cancer.  They have chapters all across the country - run by students of local universities.  The camp is for one full week and is completely free of charge.  Once a child is eligible to go to Camp Kesem, they are guaranteed a spot at camp until they are in the ninth grade.  Although there is a day for honoring loved ones, the camp does not focus on cancer.  It focuses on allowing a space where these children can have fun, which is something that is often in short supply when you are dealing with cancer.  




Last night I carefully packed outfits, swimsuits, towels, a sleeping bag, and all of her other necessities and prepared her for camp.  She was so excited she could barely sleep.  I wanted to write her letters, but the camp said that letters can often make children more homesick... so I practiced restraint.  This morning, her father, brother, and I dropped her off.   Caya was greeted with a huge hug when we arrived at campus.  She met the other campers in her group and the counselors - and immediately began making friends.  She was laughing and happy. We waved at the buses as they drove away - her brother sobbing - me trying to smile and not sob with him.  I know she will have an amazing time.  This will be another one of the many positive things that has come out of this experience.  And in a few years, her brother will be able to join her.  I told her that she would be welcome to call us this evening if she wanted to.  To my surprise she  didn't.  I think she is probably having too much fun.  I hope she calls tomorrow.  I miss her.   





For more information about Camp Kesem - click here.
For previous book recommendations on how to talk to children about cancer - click here. 

Sunday, June 2, 2013

Rad Grad

Last Thursday, I officially completed radiation - all 33 rounds of it.

I was so excited Wednesday night, I could barely sleep.  As I had said in an earlier post, I was more afraid of radiation than I was of chemotherapy or surgery.  But I was able to let go of my fear and be thankful for yet another weapon to insure that I live to be an old lady.

For the most part, the experience was far from terrible.  I had a wonderful radiation oncologist who answered my questions with enthusiasm and care.  I also had an incredibly sweet, funny, and professional radiation therapy team who were just as at ease joking with me as they were wiping my tears on both the first and last days of treatment.  And I also made friends with such loving and authentic people waiting each day for treatments or for the treatment of their loved ones - and they have each been in my prayers ever since.  And on top of all of that, my skin reactions were not nearly as horrible as they could have been.  I had one and a half weeks of extreme pain, tightness, and itching - but almost as soon as it arrived, it was gone.  Today, only three days after my last boost and a week and a half since my last full treatment, I am feeling pretty good.  The red skin is turning brown and in parts peeling as if I spent a long weekend sunbathing with one breast exposed like some Amazonian princess.  The hardest part about radiation is the having to think about cancer in an intense way every day for six and a half weeks.  


I stayed up late the night before my last session making stickers for my treatment team.  I created this little radiation monster, a special Frida "hope" sticker, and one with the sloth monster.  I also stopped off and got gourmet candy bars at Whole Foods for everyone.  I wanted to make thank you cards too but didn't have time.  So instead, I told everyone how much they meant to me, cried a ton, and got lots of hugs.  They gave me a certificate and a little bouquet of hershey kisses.  The radiation therapists took these lovely pictures so you could get a better understanding of how I spent these last six and a half weeks.  







This last picture is my view of the machine... which is why I wanted to give them a special sticker.  They were very excited about adding it to the collection - and I was happy thinking that perhaps my sticker would distract future women during their treatments.

Over the last six and a half weeks, I have driven a total of 1188 miles, paid $64 worth of tips to the valet parking attendants, used 5 tubes of miaderm (at $33 each), 2 tubes of calendula ($12 each) 3 bottles of aloe gel ($10 each), 2 bottles of rosewater ($10 each), 1 bottle of aloe juice ($10), 2 tubes of liquid lanolin ($7 each), used 2 cooling aloe pads ($25 each), ruined 6 forever 21 tank tops, and another 6 hanes mens tank tops and lost one glass water bottle ($14)... for a grand total of $439(not including gasoline).  Cancer is extremely expensive.  The costs for treatment  goes way beyond insurance co-payments and premiums.  I don't mean to complain - I feel extremely lucky that I was able to have such excellent care and found ways to afford all of those things that made my radiation experience doable.  I just thought that it was important to share that aside from the physical and emotional hardships that is cancer - there are also enormous financial costs as well.  I have also been lucky that I have been able to be off work this entire time.  I will return to work in July.  Am I physically or emotionally ready to return to work?  No... but it is what I will have to do anyway.

  I have finished the big parts of my treatment.  Since September, I have fought cancer with 6 rounds of chemotherapy, a double mastectomy, and 33 rounds of radiation.  Tonight I will begin tamoxifen - which I will take daily for the next ten years of my life.  I will continue to have my herceptin injections until September and will have more surgery in December.  It has been quite an adventure- one that I wouldn't wish upon anyone.  And now I have one month to recover and return to work.  Yikes.

Here is my final installment of the radiation tapes.  The songs on the Pandora alternative 80's station were beginning to get pretty repetitive- so I am glad that I finished up when I did.  I think I chose this particular station because it reminded me of being young and healthy - when I danced until 3 am, wore lots of black clothing and eyeliner, and my main worry was how cool I looked.




    

xo

Saturday, May 25, 2013

Anger Management



I bet that got your attention.

A lot is written regarding how cancer can make one learn what is important in life - how to be grateful - and how to slow down.  People talk about the gift that cancer is.  Like this woman here.




And although much of this is true, cancer is also a pain in the ass.  It can be a constant barrage of appointments and disappointments... exhaustion and discomfort.  Not that there isn't some good times to be had (I absolutely adore the amazing women I have met through this journey), but let's face it, a great deal of having cancer pretty much sucks.  And the whole time this horrible thing is happening, I secretly wonder... "Why?"  I took good care of myself.  My last physical was excellent.  I eat organic foods.  I do good work in the world.  I don't drink or smoke ...  But I put on a brave face and try to be thankful for my crazy hedgehog hair and my current lack of nausea... but underneath the surface, I can be seething.  Not always... but sometimes. 

Sometimes, try as I might to hold the anger at bay, it seeps out.  It seems that the general victim of my complete anger is the valet company who parks my car at the hospital.  They drive me completely mad.
Before you think of me as an elitist snob worried about her valet parking, I have to say the only reason I use the valet is because I have to.   The hospital is under a lot of construction and the parking garage is quite a distance away.  The walk is along lots of roads with  construction- which is difficult for my asthma.  I have limited amounts of energy - and would rather use my energy to play with my kids or make art rather than walk along side traffic and construction for twenty minutes.  If you don't walk, you must take a van or bus to get to the cancer center which adds an additional twenty to thirty minutes onto my commute each way, due to the circuitous route to the hospital due to the construction and the wait for the van.  

So, here are my valet issues.  There are several parking attendants whose sole job is to just direct people around the loop in front of the hospital.  I have on more than one occasion been told to please move forward - and when I don't, because I would hit a pedestrian if I did, they wave their hands all frantically as if I am an idiot.  The other problem with the valet attendants is that they are rushing amid the chaos and on more than one occasion have darted in front of moving cars and nearly offed themselves.  Whatever system that they are using is extremely inefficient and chaotic.  It reminds me of those times when I have gone to a store where none of the customers at the cash register understand how to form a single organized line.  These things unnerve me.  My over-controlling nature kicks into overdrive and I begin telling people what to do.  One day I drove to the clinic and all of the attendants were wearing straw hats.  I imagined the meeting they held.  "What is wrong with this operation?" they asked each other.  Then they all decided that the problem was a deficit in straw hats.  Perhaps if they all had the same hat, order would follow.  (I know, they have the hats so that they don't get sun damage. - which I am glad about.  And they all do look very nice in their straw hats, but still.)

I do not like chaos.  I would have made a terrible anarchist.    I have said some pretty weird things to the attendants - like the one time when I told them that radiation was less painful then having them park my car.  Chaos is unpredictable and dangerous.  I know that it reminds me of my illness.  My doctors are some of  the best in the country... and still what will happen next is not completely for me or them to control.  I have to find a way to live with the not knowing.  Which for me is about connecting with my breath in this moment, remembering all that I have that is wonderful, finding the opportunities, and letting go of the rest.  But it is something that challenges me and pisses me off.  

Today, they didn't even have a parking space for me.  So, the valet attendant offers me a free parking pass (although my parking is always free) and apologizes.  I think if I could have pulled the radiation from my breast and shot it through my eyes and into his heart... I might have.  I am going to be late for my eight minute appointment... I have to park forever away... I have to take a stupid van... Why the hell don't you reserve the spaces for patients in treatment... I am in pain... how am I going to reach for the parking permit when I can barely extend my arm... and I am fighting stupid cancer.  I didn't tell the attendant any of these things.  I just glared at him, sighed a heavy angry sigh, and drove to the parking garage.  On the bus, all of the cancer patients were unified in our disgust at the valet parking system.  Okay.  Now that I am writing it out here, it doesn't seem like such a big deal.  My anger feels so much more difficult to contain now that I am in constant pain from the radiation.  I guess I will throw away the complaint form I got at the concierge desk. 

So, tonight I thought I would make a silly image of my angry monster.  I gave myself a nice hair do and some radiation eyes.  It made me laugh, which has been needed this evening.  Valet parking is not worse than radiation.  Radiation is exhausting and painful.  My skin is red, irritated, tight, and throbbing.  The other thing about radiation is that it is every day.  Which means, every day I have to find room for cancer treatment in my schedule.  On the bright side, my radiation oncologist is wonderful... and I adore all of my radiation therapists.  They even listen to me gripe about my valet parking issues.  I also have to say that there is one valet attendant who greets me with a smile each day.  His happiness is genuine.  He tells me I am his favorite customer... and I joke that I doubt that very seriously.  But he makes me laugh and for that I appreciate him.   

Since I didn't post last week, I thought I would share my radiation mixed tape for the last two weeks!  These of course were the songs I heard each day while laying on the table.  My favorite memory was when the radiation therapists sang to me when Tears for Fears starting playing.  One said, "Shout, Shout, Let it all Out." and I said, "These are the things I can do without" and the second therapist sang "Come on, I'm talking to you... Come on."   Three more left... 

Week Five












Week Six






Have a wonderful weekend and thanks for visiting me.

Sunday, May 12, 2013

Highs and Lows and lots of tears...

This has been quite the emotional week... so I thought perhaps I would give you short synopsis...

Monday

Monday I went to my main oncologist with my husband and my son.  I brought in my list of many questions -which my oncologist has become accustomed to at this point.  We talked about drinking coffee on tamoxifen, whether I can be in the newest  TDM1 trial (he said no, but I am going to try again),  and a bunch of other questions regarding life after treatment.  At one point, I said, "Since I have cancer..."  He put his hand on my knee and said, "Since you had cancer."  I cried and took a deep breath.  Yes.  I don't have cancer anymore.  I am cancer free.  Everything I am doing from this point forward is to insure that I continue to be cancer free.


Tuesday

I woke up with my hands not working correctly.  They had been aching for days - but now I could barely make a fist.  I tried to write something later in the day, and could not grip the pencil.  This too is an unwelcome side effect of chemotherapy.  Especially unwelcome because I am an artist, and art is my way of coping.  I  went online a little later and was attacked by the dreaded google monster.  He was hiding in a Her2support group site.  It talked about my poor prognosis.  I became extremely depressed.  Luckily, I went to my support group that evening and was able to share and cry and feel better.  The dark thoughts are intense.  Every worry is magnified and crazy making.  One of my online support group friends, Erin, likened the dark thoughts that swarm around your head to the flying monkeys from Oz.  I remember being terrified of those monkeys when I was little.  So terrified in fact, that it wasn't until a few years ago that I actually kept my eyes open and actually looked at them.  The Wizard of Oz is my daughter's favorite movie, so I began to look more closely at those monkeys.   I was surprised that they really weren't quite as scary as I had imagined (and I love their coats.)  Some of the dark thoughts I have are also not so scary when I look at them without fear clouding my vision.  I am not a statistic.  I am fighting.  And the dark thoughts are only powerful if I let fear control my vision.




Wednesday

I have a head ache.  It is intense and radiates from my eyes to behind my ears.  My vision also feels impaired.  I then get attacked by the google monster once more and have convinced myself that I have a brain tumor.  The type of cancer that I have seems to love to metastasize to the brain (I would share the google statistic that I found, but it is too scary for my family and friends).  I also found a small lump on the inside edge of my breast.  My husband tried to assure me that it felt like part of my tissue expander, but I really couldn't hear him through the incessant bad thoughts in my head.  After a good amount of fretting and crying, I took some medication and went to bed.  (Us cancer patients have all the best medications.)


Thursday

After radiation, I was directed to the waiting area so that I could see my radiologist.  It was super busy and there were lots of people waiting with me.  There is a special kinship among cancer patients.  Before long, we were comparing notes on doctors, laughing about our hair, sharing information about this study and that, and wishing each other well as each of us left the waiting area.  There was a beautiful woman who had come from the Philippines to get her treatment who loved the little hair I had.  For a while, I was the youngest one in the waiting area... but then things changed.  A young woman with breast cancer came and sat down with her husband... and then a young man came with his mother.  He had a brain tumor.  Myself and the younger woman comforted the young man who was possibly going to have to go through chemotherapy after radiation.   The young man was then called in to his examining room.  He shook all of our hands and I hoped for his full recovery.  I didn't share with him that I had been contemplating my own potential brain tumor.  All of the sudden, my fears seemed so silly.   My radiologist ensured me that I did not have a brain tumor, and that more than likely this was dehydration and more side effects from chemotherapy.  She felt the small lump in my chest and told me that it was part of my tissue expander (I guess I should have listened to my husband). So, with a big sigh of relief, I left continuing to feel cancer free.


Friday

When I was first diagnosed with cancer, I remember running into a good friend at Target.  I sobbed at the end of the hot wheels aisle as I told her about my upcoming treatments.  Within a week of telling her, my friend's mother began sending me cards.  They would come every other week - and sometimes weekly... but always just when I needed them.  They reminded me of my strength, and let me know that I was in her thoughts and prayers.  They meant so much to me, especially since she herself was battling stage 4 lung cancer.  About two months ago, the cards stopped coming.  I found out from her daughter that her life was nearing its end.  I was able to visit her one last time and sat on her bedside telling her how much those cards had meant to me.  She died a few weeks ago.  When her daughter asked me to read at the memorial service, I almost said no.  She wanted me to read the poem "What Cancer Cannot Do."  I envisioned myself as a big sobbing mess in front of everyone ruining everything.  I also knew I would regret it if I didn't do it.  My husband encouraged me to read the poem when I talked with him about saying no.  My friend said she would be fine with my tears.  So, I read over the poem 50 times and thought I was ready.  On Friday, I read it at the service and cried.  And even though I tried, I couldn't stop the tears.  I was sad that she was gone.  I was sad that her family was mourning.  I was sad that her grandson lost his grandmother.  I was sad because of my own battle with cancer.  And guess what, even though I cried and it was challenging, it ended up being okay.  It was a sad thing- and my tears were appropriate.  And I felt so lucky to have been a part of such a beautiful ceremony.


Saturday

We decided to celebrate Mother's Day today to avoid the crowds.  We took the kids to the aquarium and then out to lunch at a beautiful new restaurant that served lots of delicious organic and vegetarian options.  It was a wonderful day!  I sat at the table looking across at my husband and daughter, with my son leaning his little body against me and started to cry.  They were all so beautiful.  I want desperately to live to see my children fall in love.  I want to play with my grandchildren.  I want so much out of this life... but in that moment, I just felt happy and thankful.  Almost immediately, a woman sitting at a table next to us began to have a tantrum with her waitperson.  She then asked to speak with the manager and then the owner.  She complained about everything that she could think of.  Her anger was relentless.  Her mother and grandmother were both trying to calm her down in Russian, but she snapped at both of them.  Her small child was sitting next to her in his stroller.  I wanted to tell her what I had learned on this journey - that these things she was so angry about were trivial.  That she should feel so lucky to have four generations sitting at one table sharing a meal... but instead, we hurriedly paid our bill and left the restaurant   Before leaving, I told the owner that we had a lovely experience and thanked him.  I don't think the angry customer would have been open to my advice anyway.  Some things you have to learn for yourself... which is too bad. 


Sunday

My husband made me a delicious anti-cancer smoothie and we had a lazy day at home.  The highlight of the day was talking to my mom, sister, and dad over Skype.  I miss them all terribly.  This illness has helped me to understand how important it is to be near family - and I know I will make it happen one day.  But for now, I am thankful for Skype.  Of course, tears were shed.  I am so lucky to have their support, even though they are far away.  

So, I think I cried pretty much every day this week... but all in all, it was a good week.  I hope everyone had a wonderful Mother's Day!  Here is the "What Cancer Cannot Do" poem...


What Cancer Cannot Do.


It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendships
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
-anonymous

20/33 radiation treatments completed!  I am feeling much more pink and my chest is shiny from my intensive lotion regimen... 
but I am surviving.  








Monday, May 6, 2013

Slothra - The 300 Pound Sloth Monster

For those of you just joining me, I am wanting to spend some time drawing out some of the monsters that I have been cohabitating with as of late.  Mind you, I don't feel like this has been a happy arrangement.  I more often feel kidnapped by these monsters, but am trying to find ways to recognize these monsters' purpose and how I might hold power over them.  I wanted to post a monster mid week, but unfortunately, I was attacked by yet another monster.  This one has been attacking more frequently - especially since the beginning of radiation.  His name is Slothra - the 300 pound Sloth Monster.

I am extremely thankful for cancer treatments.  It is what is giving me the opportunity to continue living despite the large tumor that was found growing in my chest.  It is what I am hoping will allow me the privilege of seeing my children fall in love and become the people they are destined to be.  At the same time that cancer treatments are amazing, they are also painful, humiliating, depressing, anxiety provoking, and completely and utterly exhausting.  During radiation last week, I fell asleep and almost rolled off the table.  The waiting room is full of people with eyes half mast barely able to hold onto their People magazines.  This side effect is one of the more difficult ones for me.  Prior to cancer, I often had several jobs - I was a full time therapist working in the schools, I taught at two universities, I supervised an amazing group of interns, I made art and sold it online, and I still made time to be a mom and wife.  I was also in the middle of writing a book for kids about using coping strategies.  My plate was always full.  I didn't have time for television (with the exception of Project Runway).  I was too busy working and creating.



When I envisioned this monster, I thought of this enormous creature with its fuzzy arms wrapped around me hitching a ride.  Under his weight, it feels impossible to get anything done.  He isn't mean or scary... but he is debilitating.  Most nights, I just give up trying to coax him to leave me alone.  Instead I snuggle up next to him on the sofa and watch four hours of Iron Man movies. The house is a mess.  Laundry needs to be done.  I want to write that book.  But he wraps his weighty gigantic fuzzy arms around me and I feel paralyzed.  The fact is I need this monster.  If I didn't have him, I would continue to over work myself and not get the rest that I need for my cells to regenerate and heal.  But I also know that I need to find some way to strike a deal with Slothra.  Maybe in exchange for getting to bed before midnight, I can do art three nights out of every week.  Maybe for every hour of television I watch, I can clean for 20 minutes.  I have noticed that when I exercise, he tends to get bored and leaves me along for a while. It is just so hard to have the motivation to exercise when you have a 300 pound sloth monster on your back.

I have completed 15 out of 33 radiation sessions.  Aside from feeling exhausted, my skin is getting a little pink and the itching has increased.  My doctor's thought that my skin was looking very good- so I am encouraged.  I continue to be religious about skin care.  This is extremely important for me.  I have been someone who has not been very good about taking care of myself in the past.  If you want to survive cancer treatments, you have to be extremely good at self-care.  Taking medications and supplements on time, doing physical therapy exercises, drinking enough water, sleeping, and applying creams four times a day forces me to be an active part in my own healing.  This is one thing that I hope I don't forget after radiation.

Here are my songs for this week!  On Wednesday, the 80's station played "Girls Just want to have fun" just before they played, "Staying Alive."  The wonderful radiation technicians also heard the interesting song selections and when they came back in the room we all laughed.   I guess I do try to have as much fun as I can staying alive.  We all thought it was a positive sign.











Sending love and peace.

Sunday, April 28, 2013

My Monsters

Second week of radiation treatments have been completed and thus far I seem to be faring well.  It is still too early to tell whether or not I will be one of the lucky ones and escape unscathed... but I am keeping my fingers crossed.  The side effects that I am noticing at this moment include some itchiness, internal tingling sensations, and exhaustion.

I am lucky in that I have an amazing online support group where we often share those things that people who aren't battling cancer can't understand.  This beautiful group of women remind each other constantly of how strong we all are and how stupid cancer is. When we are feeling anxious and scared, we lift each other with a chorus of "you got this" and know that we will get through it.  We share information We post pictures documenting hair growth and encouraging each other to go "topless" - which for the uninitiated, means without a hat or wig.  We share our fears, and feel relief to know that we aren't alone.  We discuss sassy comeback lines that we imagine using when people make rude comments about our hair or tell us about yet another person they know who died of breast cancer.  And we also laugh and find comedy in this frightening period in our lives.  I have said many a prayer for each of them and treasure their friendship.  It has been one of the biggest blessings that breast cancer has given me.  They are also incredibly witty and intelligent.  We are hoping to meet sometime later this year.  I know that as soon as I see them, I will be an emotional mess.   I can not imagine how alone I would have been without them.   Anyway....

The other day, I clicked on something I shouldn't have.  It was an article about breast cancer recurrence rates and subsequent survival.  I became paralyzed with fear.  The sad thing is that once I read one story, I begin searching around the internet looking for some story that will in some way disprove the last story I read... unfortunately, often it only leads to more terrifying stories.  The fear a cancer patient experiences can be intense.  My head was already pounding from not drinking enough water during radiation, and then I began crying, which triggered a rapid succession of hot flashes.  I posted about my fears and one of my survivor friends, Kelley, called it the "google monster"... and that was the impetus for this post.  I wanted to make art about some of the monsters that have been squatting in my psyche.  My hope is that if I know what they look like, what feeds them, and how best to tame them - then perhaps, I can control them and they will no longer control me.  At this point, I have named at least five little monsters.  I wanted to finish a few to share today... but only completed one.  (One of my monsters zaps all of my energy and leaves me completely lethargic, but you will hear more about that monster later).  So - I think that means this will be MONSTER week.... and what better place to begin than with Google Monster.


Google Monster

So, I have kind of explained the Google Monster already.  I heard an author once liken the internet to the sirens in Greek Mythology.  (I have searched everywhere for her name, but have come up empty.  If you know, please leave it in the comments section)  Sirens were enchanted creatures that would lure sailors to their death with their beautiful song.  In the story of the Odyssey, the sirens promised Odysseus comprehensive and absolute knowledge about everything on earth.  Sounds very much like the internet.  I can sit at my computer   to quickly check my e-mail and go on facebook, and before long I am lost at sea... searching for hours trying to find the perfect Vegan recipes to include on my pinterest board.  So, what I know about this monster is that it feeds on my hunger for knowledge.  When Odysseus was to face the sirens, the goddess Circe advised him to fill the ears of his men with beeswax.  Odysseus wanted to hear the song, so she told him to have his men tie him to the mast of the ship and not release him until they were out of danger.  He apparently begged to be released, but they refused.  In another myth, Jason (of Argonaut fame) brought Orpheus to help him traverse Siren infested waters.  When Orpheus heard the Siren's song, he immediately began to play  his lyre - a song so beautiful it drowned out the tempting voices of the sirens. So how do I metaphorically fill my ears with beeswax?  How do I tie myself to the mast of my ship?  How do I drown out the Siren's song?   I may not be able to stuff my ears with beeswax, but I can fill them with my children's laughter (which is one of the most beautiful sounds that I know of) or I can fill my ears with conversations with my husband - with the support of friends and family.   It is difficult because Sirens do not make up the entirety of the ocean.  So much of what I find on the internet is powerful and healing - such as my support group.  I just need to find ways to stay in safe waters.  It is said that once Odysseus heard the Siren's song and (with the help of some strong rope) resisted its call, the sirens  hurled themselves in the ocean and drowned.  This part of the story resonates with me.  I know that if I don't listen to the call of the Google Monster, the monster can not survive, just like the sirens.  Of course, writing this post made me think of my favorite This Mortal Coil song (Siren's Song)... which led me to find it on You Tube... and share it here (and when I finish this post, I think I will look up whatever happened to Elizabeth Frasier (the singer) on Google -see how great the internet is!)


Speaking of music, here are the songs I heard while lying on the radiation table this last week.  I have 10 down and 23 sessions to go!  I can't wait until the to go number is smaller than the down number.  The first week, I didn't really have to request any music because it was set to a good station.  The second week the radio was off.  I asked for an oldies station.  He gave me a station of big band music.  I have nothing against big band music, but I just kept seeing myself in some old musical with the radiologists dancing in unison as they dotted my chest to the trombone solo.  It was distracting.  The second day, I tried for sixties and seventies music.  It was an off day.  Lots of music that I really didn't like at all.  There is nothing worse than not being able to move and having some song you find excruciating playing in the background.  By Thursday, enough was enough.  I asked for a nice eighties station... and things went much better.  By Friday, there were so many great songs to choose from it was rather challenging.  I didn't choose this one (it has never been one of my favorites), but I did have a good time listening to "Another one bites the dust" and imagining my cancer cells blowing up to the beat.











Hopefully I will finish another monster and post it this week!  Thanks Kelley for the inspiration!  And thank you to everyone for checking in with me.   Feel free to leave me a comment so I know you are there.  Sending blessings.