Thursday, September 10, 2015

Making It Count

Yesterday I was at lunch with a couple of friends. One of whom is now Phil's boss's wife. It wasn't strange because like most of the ladies I've been fortunate enough to be associated with through the Air Force and Air National Guard, we are pretty awesome by nature. We don't wear our husband's rank but we gladly step up to the plate to make things run better, feel homier, supportive and fun. And I use "we" in the loosest association possible as I am one of the wives who is MIA. Of course this woman, whose husband is now never home has the added "responsibility" of caring for all the wives under his command. I use the term responsibility with the fun quotes because most of such responsibilities are not even implied, they are self imposed. It is tradition based on need. A woman who marries into this lifestyle generally knows what she is getting into, or learns pretty quickly. When I was a new wife there was discussion as to whether or not fiance's should be included in wifely socials. As a newbie with a relatively short affianced period(less than 24 hours...really no time for socials or much else), I was hesitant to put my 2 cents in but felt that these young women should really know what they were getting into. I married my high school sweetheart who went to the Air Force Academy, so I had already been conditioned to accept a lot of bull shit- let's give these girls a fighting chance. Plus we knew these young guys- we were a gaggle of protective sisters- the trial period was also an interview.

So my friend casually mentions- I don't seem to be getting your blog notifications anymore. I don't know if there's a problem....

Oh yeah. The problem is me. My brain and the amount of emotional energy I am willing to expend on making a pile of shit palatable.  My one rule when I started blogging was I would try and find the positive side- I didn't want to be the debbie downer. Because sometimes you get stuck down there. And a lot of the stuff you go through with cancer and kids and the military lifestyle takes a fair amount of effort to put a positive spin on. Some days smiling is a chore and the allotted energy expenditure of the day. I have to make it count.

My friend Cheryl calls and checks in on me all the time. And we talk about goofy normal things. Sometimes we talk about serious things, or she asks cancer advice. She doesn't have cancer, but unfortunately we don't run in too many circles that haven't been hit by cancer.  I guess some consider me an authority on the subject. Not to toot my own tumors, but I do have some experience in the field. But I try not to have that be the only experience that counts.

Cheryl always waits for a lull in the conversation to ask how I am doing. The no bullshit, honest to goodness truth. She is one of my 5 religious blog readers. And one of the few friends who isn't afraid to call to check on me.  We have known each other for over a decade(that can't be right- yep- yep it is). She is one of those friends who I know if I needed anything, would be here as fast as she could manage it. She speaks her mind whether it's popular or not and as someone who struggles with small talk- I love this. She also pays attention. She kindly points out I haven't updated the blog in months and while I might be wallowing in cancer or whatever, she reminds me others out there are actually paying attention. Sometimes I forget. When you are in the throws, you lose touch. You just do.  I try to appreciate that everyone is busy. Everyone has their battles and that I am not always front and center in their minds and that's ok because I really don't like being front and center. She also reminds me that they care and that my journey is being followed and I have some follow up to do.  Well shit- this quick post is already out of it's mind- see how it happens...

Living with cancer pretty much sucks. I try to find the positive in every little thing because I know it is going to get harder. I try to find the positive because I NEED it.  It is difficult to not get bitter. It takes effort. You see the never ending parade of cancer-fight-strength isms every where.  Cure. Strong. Somehow the world equates cancer with beautiful strong people because those beautiful strong people are the poster children. Sometimes it's easy to paste on the smile for a minute. Sometimes it is not.  I do know that people do not want to be around negative nellies. And if I was being real about it-cancer by nature is pretty fricken negative. But many do not want to hear it. You have hair- you must be in remission. You beat cancer.

I have hair. Having hair in no way is an indication of how much cancer is in my body, or anyone's body. I looked perfectly healthy when I had dozens of tumors in my lungs and bones. I looked healthy when I had a sarcoma in my arm and 3 tumors in my breast.  When I completely responded to chemo- I looked like hell. Actually I looked pretty ok- just bald. And the plus side was that I lost like 30 pounds. Yes that is sad. I actually needed to lose that weight. But again- didn't really look healthy. Was I healthy? Oh I love those medical questionnaire questions-- how would you rate your overall health? Well overall- if you take away the dozens of reckless tumors that are threatening my ability to breathe, balance, walk, think- I'm in excellent health- well maybe just good. Does that count?

Cancer comes back. Cancer is predictably unpredictable. Cancer is mean and strong and works around "conventional treatments". I do not believe there is a cure for cancer, I believe it can be managed. Chemotherapy is toxic. It has toxic effects that can lead to organ failure. The guiding principle in cancer treatments right now is to kill more of the cancer than good cells before the body calls it quits.  Alternative medicine does not cure cancer either. If it did- THERE WOULD BE NO CANCER.  The way we look at cancer is wrong and there is a push for personalized medicine and genomics and that is truly important to how people will survive with cancer.  Since I have Li-Fraumeni Syndrome, I never thought for a second I would be immune to cancer. I knew it was coming for me. When it attacked Lily monkey- well damn- I should have seen that coming. Bastard. But this language about fighting cancer. It's a fight. But it's also a dance. It's also an agreement between host and disease sometimes to mutually respect the other's will to live. I have yet to meet someone with cancer who didn't want to be cured of it. But the mindset changes when there is no cure. You can either beat your head against the curative wall or begin looking for another way around it. Will my will outlast cancer? No idea. I could die of heart failure- technically a draw right- I didn't give up, my cancer didn't give do you count that?

And what if you just say I am done fighting? Not quitting, just not fighting. Plugging the chemo in day after day, week after week because they side effects aren't always manageable. Cheryl- stop panicking this is hypothetical- I'm not stopping treatment. Because chemo sometimes is only to hold cancer off. I have mets. metastasis. I am  responding to treatment. But as I near the 9 month point of being on this chemo- I know that I am now in the zone where it tends to stop working.  I will not be cured. I will continue getting this drug every 3 weeks until I have proof that it is no longer keeping my cancer at bay.  Because my cancer is not active on scans, doesn't mean it is not THERE. SO if I stop chemo, it will become active and I might not be able to stomp it back. It might find a way to work around the chemo anyways.  Others need to view it as win/loss/ here/ gone. I have seen many many people absolutely shattered when cancer comes back. "But I thought I was cured. I thought I was in remission. I didn't know it could come back." I look at it not as if it will come back but when. This knowledge also helps me guide treatment and choose the most livable options. I know for a fact many people would choose differently if they knew the outcome. That is one of the really frustrating bits- no way to know. I play the what if game. What can I live with comes back? If it doesn't? I didn't reconstruct because in this what if game- what if it comes back? Did I want to have spent months on surgery during that time? No- I wanted that time to count.  What if it didn't come back? Was I ok being the uniboober? Dang skippy and relieved I didn't reconstruct at this point.  That's me. I know women NEED to reconstruct to feel whole and that's ok. Others NEED to fight and win and count every chemo, cancer, treatment, hour in the chair. Cheryl yelled at me because I by my quest for normal, deprived her and obviously some of you of celebrating WITH me.  So I promised to be better about checking in and updating and finding the things to celebrate. I have yet to manage to schedule a haircut- but I have amazing curls. They are messy and crazy and pretty fricken cool. Each time I get to scrunch them or I get a comment on how great they are- its a mini celebration.

And so these are some of the things that go through my mind. And it's messy like my hair. And switches with the wind. And I will try to be better about sharing some of the crazy shenanigans my kids get into. Because that's where most of my time and effort is and that is what counts.


  1. Jen, I am a religious reader too and won't lie that I have been concerned about the quiet blog as well. Ask Jamie as I asked her :). Your blog and your outright commitment to life is an inspiration always even if the "fight" just down right sucks and seems incongruent with how you actually feel. I think about you often and my heart smiled when I saw this post! Thank you for checking in. I love your words and find them honest, never negative. Keep managing and dancing!! Love from Colorado, Jen

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  3. Thank you Jen! I really appreciate it. Hugs!


Lily Kay Monkey

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