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 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.


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.


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.)


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.


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.


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. 


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

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.