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.