We got a new bottle for the mitotane last time. It's all square- look at me I'm the space saving model. I line up better, I wish all my compadres were square.
So I check out the bottle. The notices on all of Lily's meds- take with food, keep away from children, and chemotherapy. Take with food, hmm, yeah. That with the chemo label- talk about oxymoron. I thoroughly can't get enough of the "keep away from children". It's required on all medications, soaps, anything that if ingested in great quantities will kill you- like chemotherapy. We dedicated a corner of the counter to our pharmacy. My friend Tracey laughs that no mattter the ailment- I'm like- Whatcha need? Tylenol? Benadryl? Band-aids? Gauze?Chemotherapy? No I don't share Rx meds- just the OTC ones. But they all share a spot. I don't even use that counter to prepare food any more, just Lily's meds. I'm looking forward to a few weeks from now when I can reclaim that space and the space on the upstairs counter where we prepare her tube feeds. Mostly I just think of all the junk that was there before and wonder why I didn't purge it earlier.
I am also hoping that these blog entries will become fewer, and so I would like to put cancer unrelated stories back on my adventures in potty training blog. We'll see- it all intertwines. There are so many issues we will face still. Hopefully it will just be the adrenal insufficiency and getting back to normal, and not more toomas.
I have recently had contact with a couple of ladies whose kiddos survived this cancer. Both have been labelled as "cured". A few weeks back I started searching for survivors. I found 2. One of the moms, Buffy Krajewski- wrote a book called An Angel's Kiss that details her journey through this beast- over 10 years ago when literally they had not seen this cancer in children- and they discovered her son's tumor before he was born. I spent some time reading her story and found a kindred spirit and glimmer of hope. If you are interested you can find it on lulu.com. I also found that the war is not won, the battlefield just changes. She linked me up with her best friend whose daughter was diagnosed similar to Lily's circumstances and she is now a thriving teen. They have an online support group of which I became the 8th member. It is not a particularly active group, as working parents- who has the time? One mom wrote on her daughters blog an appeal to her friends to help me because she just can't. And I understand COMPLETELY. The intellectual scientist in me is mad- I want to know, I want to know her road, what helps, what doesn't- I want to compile data. But the mom, the survivor in me understands. I understand that just hearing of Lily's circumstance puts her back in a personal hell. You put things down deep so you can move on. I know.
After Bob, Dad, and Eric died- there was a trend in Hollywood with Brain tumors. Sure I could joke daily that my mere forgetfullness was a tumor- but I didn't set it to sad music and use it to kill off a beloved character or milk the emotions of a generation looking for a cause. I had already felt it. I hated when they pulled it out as a surprise, shock value. Shortly after Lily was diagnosed, we rented Bucket List. I thought it was like Grumpy Old Men- I fortunately had a particularly rough day and opted for bed instead of the movie. My husband watched it,gave me extra hugs that night and told me he already put it back in the mailbox. I then rented the Express because I was being thoughful and thought the boys would enjoy a good football inspirational film- my husband looks at me- You know he dies of cancer right? In the same tone he asked 15 years ago when I asked him to see Titanic- You know it sinks right? Ok- I have been subjected to a lot of sports center, espn the magazine and the channel- but how would I KNOW this? SO we have been sticking to comedies. Which brings me to my next rant. It's a subject that Buffy mentioned directly in her book that I have felt repeatedly- yet I had never been able to materialize. It's like the cancer movies- you have people(like me) who avoid them. Some because they have felt it first hand and a) don't want to relive it or b) are annoyed at the dramatic license and sensationalism of it or c)just prefer to live in their happy place. Then you have people who watch them over and over either to cling to a memory, or feel something they have been lucky enough to be spared.
When dealing with cancer, you find the same kind of reactions. You have people who flock to your side, support you because they know you and love you and would do anything for you- they would watch the movie for you. You also have those who do it for themselves. So they can tell anyone they know about your case to get the sympathy reaction. You have friends who disappear because they prefer to find their happy place. The type of person who tells you they are praying for you and know that they relished the opportunity to tell their prayer group about you not so they can add you to their prayers, but so they are in the spotlight. They embrace their need for attention more than the opportunity to embrace the good that the power of prayer has. I have learned that this kind of person will never know that they are this kind of person. If you stop to wonder if you are this person- you probably aren't. I actively eliminate this kind of person from my life.
After Lily was diagnosed I had so many people tell me- I had NO idea you had so much cancer in your life. My good friends know because many of them lived through it with me- or were by my side long enough to see one of those times the scab is inadvertently ripped off and there you are raw and bleeding. After my loss- I volunteered in a peds cancer ward, not to continuously rip open the wound, because I was still raw enough to want to make a difference. After time, life gets back to "normal" and that period of time that seemed to define you becomes a very real part of you that nobody can see unless you want them to. There are people who live off of the wound, using it to fill a void that the cancer left. There are those who use it to give their life a new direction and become champions of the cause. There are those who go on and cherish the ability to merely, go on. Sometimes the strength it takes to let the wound heal is greater than the energy it takes to keep picking at it. Isn't that ironic?
In a few months Lil's hair will be back, and hopefully we'll have the side effects(psychological and physical) managed. Her scars will be hidden by clothing, which she will choose to wear or not. But they will always be a part of her, of us. The scars will forever mark all of us. Whether we acknowledge them or not.