Tuesday, May 8, 2012

Just Keep Swimming...

A couple months ago, a new rec center opened here on the island. The KROC Center- is a state of the art worship, pray, play, exercise, fun kind of place. The fees are affordable, especially for a family and I don't have to spend hours afterwards cleaning sand out of everywhere. It is a great opportunity to watch people, while the kids can splash around with Lifeguards at every turn.

I just can't believe some people. They go to the pool and drop their kids off and go work out or don't even pay attention. I can't tell you how many times I see the lifeguard grab a kid and take them over to their parents because they repeatedly don't follow the rules. 

We started going to the Kroc center every Wednesday(short day of school) and most weekends. The kids have come to rely on it as part of our schedule- but it is also a great incentive to get them to clean their rooms and do their homework quickly. This Wednesday was even shorter due to the May Day Program and I had the girls' suits packed and ready to go in the car.

So this woman isn't even through the doorher kids are off down the hall and she doesn't even go into the locker room to supervise. She is on her darn cell phone. 

It poured after the program, I was so grateful the clouds held off like they did. I was waiting for my rainbow- I needed one that day. I didn't see one, but I packed the girls- already slightly damp into the car-they were going to get wet anyhow. I just hope the rain moves past by the time we get there. It looks like it will. I have to keep positive. I hear my phone buzzing away in my bag. I have put a new ringer on for all calls from the hospital, it's called sci-fi. It's like spooky whistling you hear on all the shows when they talk about alien abductions. It makes me laugh because I know most calls from the hospital are not good.

The kids come running out of the locker room and just throw their clothes on a chair. The mom shoves them into a bag- the whole time on her phone. The lifeguards aren't babysitters. 

I check the messages while the girls are in the locker room changing. I don't know if the signal is in there or not. We head to the chairs and I find one that has a decent view of all areas of the pools so I can try to keep tabs on the girls. I have a call I have to make for Li Fraumeni Syndrome Association, we have our Board Meeting coming up and I need to make sure some details are taken care of.   But that will have to wait- the message is from my Genetic counselor. She has been trying to fix the recent comedy of errors that is what the hospital refers to as "business".  Last night I got a call from the surgical oncology nurse. They moved my surgery date to the 18th of May to take into account the potential need to deal with another tumor that popped up on the MRI.  After reasonable pleading and making a case for common sense that it should not take 2 weeks to perform the necessary imaging and biopsying of said new tumor if it was that urgent and that my plans to travel on the 23rd were not flexible and 5 days was not enough time to heal from surgery when traveling with 4 kids. But Jennifer- this may be cancer and it could be very serious.   As am I when I say- that is not enough time and if it IS serious- this all needs to move faster anyhow. It did not matter. An entire weeks worth of appointments were wiped out and rescheduled without my approval. Tests were ordered that I had already refused based on radiation exposure.  I was a mess. My husband was again gone - the first bad omen. The other being the Mallory family attempting any sort of trip. We used to laugh at the show LOST and how the island didn't want them to leave, yet seemed to be trying to kill them at the same time. I was beginning to relate.

Look at her, doesn't even put her cell phone down for 2 seconds. Probably chatting to friends while her kids are right there in front of her. The littlest one can't even swim. Engage.

I walk over to the side of the pool. Bella and I had been working on her swimming technique before I had my 1st surgery. I should be able to be back in the water by now, except the minor wound- the one that isn't cancer and doesn't have to be completely cut out anyhow- dehisced. A fancy word for came wide open and now has to heal from the inside out. Which means, no pool, no baths, no long luxurious hot showers until the little eye on my backside completely heals. So now I am relegated to the sidelines, miming the various swim skills I would like her to practice. Kiera, like always is happy to help show her some moves.  I am grateful for that as the phone is ringing yet again. It's my genetic counselor, she has fixed the schedule and it makes for a really busy week- again being at Tripler almost every day- but I need to make this happen. I walk back to the table where my latest notebook is to write down whatever we discuss. I learned long ago- if I don't write it down- I won't remember.  

Thought for a second she would engage, nope back to whatever is more important than her kids. I wish people would realize they are missing out on what's right in front of them. 

I debate whether or not I want to ask the hard hitting question. After all, I am in a public place with my kids and now is not the time to hear things I can't unhear. Which means it's out of my mouth before I can stop it- I want to know exactly what the radiologist said, I want to know exactly what everyone is thinking. I don't want decisions made for me, this is my call. I am a part of the team and I need the information to decide what we are going to do.    Ok, the report is Bi-rads 5. There are two lesions, one is nodular, one looks like it is in the duct.  Most radiologists read that as highly suspicious, about a 50% chance of malignancy. Our radiologist reads it as probably malignant.  We need to do a biopsy to know for sure. We can do a fine needle aspiration, but that won't give us as much information as a core biopsy with nodes. Why can't we do an old fashioned surgical biopsy when we are doing surgery on Friday? You know wide margins- unlike the arm thing. It will take weeks for the path to come back anyways. It probably is better to know IF we are dealing with a malignancy before we go into surgery.  That is a good point, although we can probably guess  it is. Well we can know how big of margins to take, you never know it could be a cyst. The surgeon has already been briefed and is ready to do the lumpectomy.  Ok, let's do the core. I'll schedule it, probably Tuesday or Wednesday next week, I will send you a message with all of the appointment times. Thank you for fighting for me. No, you have a pretty good handle on this. I'll be in touch. I look down at the screen. I don't feel like I have a good handle on this. I don't want to handle this at all. I want to jump into the pool and swim with my girls like nothing is wrong and there isn't a gigantic timer that has just been placed above my head. I know everyone has one, but I don't want it to be so BIG right now and so LOUD. I call my mother in law. She knows the pathologist and chief of surgery at the hospital. It's time to hedge my bets. I need all the help I can get at this point. I wipe away the tears. There is not time for feeling. Yet the fear, the anger all of it keeps trying to seep out of my eyes. Big old betrayers.

Oh god, is she crying? What the hell? Is a day at the pool too taxing for her? Seriously- you don't get any easier than this. 

The clouds are moving back in. The girls are cold and hungry. My phone rings again. Go get changed and we'll go to lunch- I answer the phone and move everything under the umbrella. It's a friend with LFS, I sent her a message that I needed her expertise on saving the tatas. She is up to her eyeballs in trying to find the best treatment for her son and a new rare condition, but I trust her and I know she will call if she can. She is an information hound and she is real. She has been through 2 breast cancers and treatments with LFS so she knows what there is to know. Is this your 1st cancer? Yeah- I didn't want to tell the LFSers because the first one was just a sarcoma.  Wait, you have a sarcoma too? Where? Is it one of those fibrohistio things? You are holding it together much too well for your first cancer. I was a complete wreck. I don't feel like I am holding together. I literally feel the seams snapping string by string. I do know that this feels much more manageable than when they told me Lily had cancer.  I feel 1000% better talking to her. She says she agrees with getting the lumps out- but taking the trip is what I need, do it. She also points out how long it has taken her to progress with her son- we know the routine. No one wants to listen to you when you say something is wrong- then when they decide it's urgent you still have to hurry up and wait until you are on their schedule. The kids are changed and just waiting, we gather up our stuff as we move to the door, the phone rings again. All three sag and moan- not again. Although I need to return that call, I also need to spend time with my girls. This is the balance- a new balance that I have managed before and will get through again. Managing cancer with living. Certain things will have to give and certain things I will have to let go. I have to let go of how I feel other people see me, after all they don't know where I am coming from and things aren't always what they seem.  But I do know- sometimes you have got to just keep swimming, well at least when the incisions heal you can!

1 comment:

  1. Just keep swimming Jen! Klaus still prides his little fishy's on his book shelf.

    Just keep swimming.....xxo Tracy


Lily Kay Monkey

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