Tuesday, June 3, 2014

Summer Plans

Most summers past consisted of me trying to strategically plan activities for the 4 kids with precise dispersement so that there was balance between downtime, fun and productivity. With kids spanning so many years and interests- and a finite budget- this is tricky. Many years have included various camps and fun and good summer memories.

This year is no different except that for the better part of the summer fun time, I will be recovering from surgery.  Here's the long and the short of it- with not too many crazy details but enough to keep the masses of 3 who read this blog happy- although I'm pretty sure those 3 know the ins and outs- but here it is.

I started chemo 6 months ago. Every three weeks I have Herceptin, pertuzumab and abraxane. With the exception of the week before we went to Disney- I skipped the abraxane so I wouldn't feel horrible.  While on chemo, many women go into menopause. I did not. It would have been the preferred case- since my tumors love estrogen- so we began to talk about what we could do to stop this feeding frenzy fueled by my super ovaries. Years ago we used to joke that Phil could just smile at me and I'd end up pregnant- well all those hormones are no longer needed and working against me. I tried taking an injection that stops the ovaries and their production of estrogen. It worked briefly. We tried another shot. It did not work. I had a biopsy to make sure there was no cancerous issue going on that was causing the bleeding- it was clean.

I got a call from my onc nurse- we miss you, is everything OK?

At chemo # 10, 3 weeks ago- I stopped in and chatted with my oncologist and we decided that I should be strong going into surgery and having chemo the week before probably wasn't ideal. Since my scans in March were awesome sauce- I get a week off. That means 2 whole weeks of feeling ok before surgery on June 5th. Now if I subtract the weeks worth of preop appointments and stress associated with going to Tripler almost every day- well I still get a week of feeling good. Beggers can't be choosers and I truly try to embrace my days.

That week was last week. I had date day with my husband. I made a trip to Target. I cooked 3 times. I went to not 1 but TWO work functions with Phil. I still have only gotten a fraction of the things I wanted to get done accomplished, but I've met with friends, started organizing my closet- cleaned off my desk(anyone whose dropped dinner off knows that was NO small task). What desk? Oh that pile of craziness behind the mountains of laundry actually has a desk under it.  At 10 pm last night, after spending the better part of the day trying to finish the closet mess I started,  Lily comes down with tears and a fistful of bills. I can't find my hearing aids, I think we are gonna need this. 

The hearing aids that are loaners because the last pair was lost? The hearing aids we specifically talked about treating like gold? The hearing aids that took 3 months to get an appointment to get on loaner?  We tear her room apart- I systematically go through her desk which is an episode of hoarders waiting to happen. She knows how bad this is. This also explains her mood for the past few days- I thought it was because I was going in to surgery and she was feeding off my stress. It turns out this is just normal life- kids learning their way and us there to guide them. We just did this a couple months ago- the last time she lost her hearing aids. I hear Phil on the stairs-psst. He holds up the case. He found them. phew. I can't help but feeling this may be just the distracting crisis I needed to put everything into perspective. Lily and I continue on into the wee hours of the night- getting her side of the room squared away. Nothing like a little motivation to accomplish a task. When the adrenaline wanes- I am too exhausted to carry on, we tell her we love her no matter what. We tell her it was irresponsible but not the end of the world.  She's had days that she's worried about this and it concurrently makes me sad and angry. Sad she has to worry and angry that we have so much going on she didn't come to us and tell us. We try to impress upon her an ounce of prevention and care can alleviate a lot of stress and worry. Like tonight. If she had told us when this happened- we could have taken care of it then, instead of her not sleeping and hoping they would turn up. She nods. I hate cancer she whispers as she hugs me. I can tell she won't sleep any better. For the past 4 days she's said this many times. I thought it was about me and I worried. I was worrying for the wrong reasons. I nod to Phil, he shows her the hearing aids. She can sleep now.

But it is part of her reality. Sometimes reality bites. Some times more than others. Cancer is our reality. It has touched us over and over and hangs like a cloud over our little Li Fraumeni Syndrome family.  It's hard not to get bitter and envious of families who never deal with cancer. It's hard not to compare over which cancer is worse or whose road has been tougher until you realize it is just counterproductive. At the end of the day, we are all just humans trying to navigate these shark infested waters of crisis and emotion. Lily was upset because cancer caused her hearing loss. The hearing loss means she has to worry about these expensive little pieces of aid. I tell her stories of how in a small way I understand- with having to wear glasses since I was 8- having them knocked off in gym class- not being able to see when we went swimming. And now- having to throw a prosthetic boob around. And I am sad. I am sad I didn't know about the cancer kids camp that was this week. There are so few opportunities here and I got wrapped up in my own journey- I missed an opportunity for her. I think she would have benefitted. Because despite us plugging along like normal because I want to feel normal- sometimes our experiences need to be validated. I don't mean by wearing a ribbon and a shirt that says I survived- although those are all tools- I think being around others who have had similar journeys is the most important way to accomplish this.  Phillip benefitted so much from diabetes camp the year he was diagnosed. Somewhere in the human connection, you can see we all have journeys and they are all tough in their own way. Sometimes by reaching through the pain and reaching out to others for help not only do we help ourselves but we help others feel validated and in return are helping them. And I am so sad that our reality is so busy that I missed this.

The reality is no one knows for sure if this surgery will help. It's considered risk reduction and has it's own set of side effects and possible complications. I know right now my system is a bit of a mess and hopefully we can knock out the hormone part that is feeding cancer and that might buy some time to lay off chemo for longer bits and have a better quality of life to hopefully be making summer plans for many summers to come.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)