The One in Which I Realized "I ain't got it."

This picture was taken on September 13, 2014. I already had a tumor in my noggin'. Isn't that freaky?

After I was diagnosed with GBM in September 2014 - after about two weeks of Steven and I feeling like we were adrift in a boat in the middle of the ocean -  we began to get our bearings. I began the process of recovering from my surgery, and we began to develop the plan for my initial treatments. In both the Los Gatos radiology department and at UCSF, they handed us a lot of papers and pamphlets offering resources to help us cope with the challenges ahead. I couldn't help noticing that Steven, as the caregiver, was being given a lot more more information than me --- ummm...excuuuuuuse me! I'm the one with brain cancer! I get it now. Being a caregiver to someone with such a serious illness is a grueling, relentless job.

In case you haven't gotten it yet, I have a pretty stubborn, Type A personality - in addition to having a potty mouth (BONUS!). It didn't take me long to get into that mode after the physical wounds started to heal. Tell me what I need to do, and I'm going to do it...to the nth degree. I was raised in a household in which Fremers didn't have headaches or stomach aches. (That's a true story. Ask anyone in my family.) I also inherited my father's analytical mind - break apart a problem, figure out the solution, and start plugging away. The more details you write down, the better, too! (Which actually turns out to be a good habit because one of my "cognitive deficits" is impairment of my short term memory - in other words, I suffer from CRS syndrome ....or Can't Remember Shit.)

I have my notebook for researching my Cancer and promising treatments. I have my notebook for planning my days purposefully to attend to my mind, body, and spirit - to do whatever I have control over to aid in my healing and survival. I usually seek support online when I need a community of like-minded people (shout out to my SAHMS - Woot! Stay at Home Moms whom I've known 21+ years), but the groups online for GBM are a major bummer filled with posts about "fallen warriors" and "angels who've gotten their wings". I respect their communities, and I know a lot of people get a lot out of it, but they leave me extremely depressed. Not helpful at all. I didn't pursue local support groups for the same reason.

For months, I was thinking, "I got this. I got this...." I am strong. I am brave. I'm a mother fuckin' brain cancer fighting ninja warrior!
but gradually, over the past few months, I've been feeling less and less certain. and more and more overwhelmed by my condition.

First of all, I can say without hesitation that my father was full of shit. #sorrynotsorry #freepass Fremers do, indeed, get headaches and stomach aches. Especially when they are receiving chemotherapy. Even the Queen of the Iron Stomachs. (If he wants to be a guest writer for this blog, I'm happy to give him the space to explain his side of the story. He is not ignorant nor stupid. This man has a PhD. and is still working full-time at 75 years old. He's not insensitive either. Maybe he's crazy? Just kidding, Dad! Love you! Xoxoxo! Near as I can tell, it was just to cut down on the whining of three young children over minor things.)

So, when I started to feel like maybe "I ain't got it!" it was a very unfamiliar feeling. And a very uncomfortable one, too. Maybe it was the gradual wearing down of my body and mind from the successive cycles of chemo? Maybe it's just....normal to have these swings in emotion when you have cancer. But I pulled out all the paperwork and made some phone calls and made appointments with a Social Worker and a Guided Imagery Facilitator. I met with the Social Worker on Monday. [By the way, I told her I owe her a whole box of tissues next time. I knew it was serious when she pulled her trash bin out from under her desk and handed it to me because I had too many used tissues to hold them anymore.]

I needed  - no, NEED help. Professional help. And I can't tell you how much it meant to just talk to someone about everything. From an objective and experienced perspective. One of the things that I remember her saying that helped a lot: (mostly because I felt like a stupid ass for not coming sooner) I said, "I thought I got this. You know?" She replied, "Well, you did have this. And then you didn't. And you asked for help, and you'll get back to feeling that way again." (She said a bunch of other reassuring and helpful things, too.)

And I stopped crying  (mostly) - and started smiling and laughing again. And it felt  - no, FEELS so good.

The One in Which I Talk About my New Goals

I know it's completely normal to feel fear when one is diagnosed with cancer. I've read it, heard it, and experienced it. What one fears is not the same for everyone. That's seems normal as well. I remember my friend, Jeanne, who recently passed from pancreatic cancer, expressed a lot of fear about the pain in the end. That is not the fear that I try to push to the dark recesses of my mind. Maybe I'm naive, but I believe there is enough modern medicine out there for me to avoid a lot of pain in the end. If I'm wrong, don't feel the need to set me straight. This is one of those situations where ignorance is truly bliss.

As much as I try to avoid it, I do have fear that bubbles up to the surface.  My fear is that I'm going to miss so many things in life by dying "young". REALLY young people who are reading this blog are thinking, "What?!?! Is she off her nut? She's 50 years old! That's not young!" But older people understand what I'm saying. I'm a mother of four children, adults (mostly): 28, 24, 22, and 20. But I've got so much of their lives to see. I've been married 25 lucky years to my Schmoopy, but I thought I had at least double that to fill our lives with memories. I fear missing the weddings, the births, the family gatherings at Game Nights, Thanksgiving and Christmas, trips with my Schmoopy...or just sitting out in the evening around a fire pit and talking and laughing...

I swear that my tumor must be near some area of my brain that controls emotions because I cry at the drop of a hat, and I can't seem to control it. I mean really CRY - the kind of crying where you can't even talk so that anyone can understand what you're saying. And I breathe deep when it starts to come on, thinking that I will get my words out before the waterworks start, but it's hopeless. I cry like that at some point on most walks with Steven. I used to apologize, but now he tells me it wouldn't feel like an official walk if I didn't cry at least once. I told you our walks are like my therapy!

So, know when I write about this subject, I'm a mess: tears streaming down my face and strangled sobs in my throat. #sorrynotsorry

<grabbing tissues and wiping my face dry>
<Deep Breaths>

When I was first diagnosed and (mostly) recovered from my surgery, and I decided that I was a Mother Fucking Brain Cancer Fighting Ninja Warrior! (Rawwr!) I took a bulletin board out of the garage and re-purposed it. I hung it up and thought about everything that I wanted to experience in the next 6 months - things that I was fighting for.

As cards and email and letters poured in from June's Warriors, I hung those up around the board and I regularly gazed at that corner as I was getting ready for the day.

(Kiddies, Here's a little tip for you: you gain a lot more time in your day if you shave - or lose- your hair. I must save 40 - 60 min. a day not having to fuss with my hair anymore.)

This weekend the family went down to watch Katherine graduate from UC Santa Barbara.  As I was waiting for Katherine to walk down the aisle for her commencement, I realized that this was the last event that I had pinned to my bulletin board. As I started to tear up, I tried to express this to my father and husband (whom I was sitting between), and after several attempts to talk through my blubbering tears, I got the message across. My father leaned over and gave me a big hug and kiss on the head. (A moment I wouldn't ever want to miss - see how that works?)

Both of them said the same thing: "Better get some new goals up there ASAP!" As soon as I got home from UCSB, I started my latest chemo cycle, so I'm not all that spry, but the more that I've been thinking about it, the more that this assignment seemed too pressing to wait until my chemo cycle was over on Friday.

Yesterday, I unpinned each card and message from all of you - reread them and smiled (yes, and cried - #freepass!), as well as my pictures of my goals and tucked them in a basket that I now have in my "meditation corner". The positive energy emanating from that basket must be off the charts!

By the time I finished that, I had to lie down, take some anti-nausea meds, and binge watch some more "Orange is the New Black" and nap. So, I woke up this morning with a blank bulletin board. That seemed like really bad karma, so I set to work importing and printing my new goals.

New board includes room for more goals as I think of them...

The first time I did this, I was afraid to go too far beyond 6 months. Why? I'm not sure. I guess that my prognosis was so shitty that I couldn't get my brain to dream beyond that. This time, I've gone into next year. My last goal up on the board is to attend Autumn Elizabeth's first birthday. But I think maybe I'm allowing the "F" word (FEAR - what did you think I was talking about?!) to interfere with my goals. And what do I really have to lose by planning for something in 2017, 2018? Wouldn't it be something if I were to witness Autumn's first dance at HER wedding?

April & Coffey's first dance - (Notice my parents in the background.)

A ninja warrior can dream, can't she? Yes, she can!

The One in Which I....Oh, shit! I forget! Ask Steven

I've talked a bit about my "cognitive deficits" as a result of my tumor and treatment. At first, it was really noticeable because I was having a little trouble actually articulating words. My tumor was on my motor strip, around where my mouth/lips, etc. are controlled, so that was not a surprise. I had a bit of mumbly-mouth, which is getting better and better.

What has become evident is that my short term memory is also affected. Like, you could give a small list of things to remember, wait 5 minutes while we talk, then ask me to repeat the list, and I will likely forget one or two of them. Thank goodness for paper and electronic devices to write things down so I don't always have to remember them, right?

One problem that has come up ...well, I'll just say it: I'm not always right anymore. (vis-a-vis Steven) Sometimes someone else will ask Steven and me a question like, "What day is..." or "How many people will..." At first I would confidently give my answer, and Steven would disagree. And THEN, to add insult to injury...he's right? (Wha?!?!)

I am only partly being a smartass. Really. I used to be the go-to girl with the right answer. Now, with my short term memory...I'd bet on Steven's answer (almost) every time.

Also, I also have lost easy access to some of my vocabulary. It's in there, but jumbled around. That can make my speech seem a little "off" in rhythm sometimes  as I search for the right word. I use the analogy of file folders. Each file folder has "stuff" (words/phrases/pictures) related to a certain subject. Some things you say over and over again, and they are pretty well glued to that file folder. Other words and phrases -  you don't use frequently. Maybe, you've only heard it, but never even said it.) So, imagine someone coming along and messing with your folders - giving them a good shake -  and words and phrases NOT glued down, float around, and settle ...somewhere! in my brain. Apparently my file folder labelled "curse words" is well-established and glued in tight. I have no trouble retrieving those mother fuckers. I am working on retrieving other words floating around in my brain and neatly putting them back in their folders for quick retrieval. This may will take some time and work, and some words may never really be "glued" in. I'm okay with that, but...

Back to Steven and me. He has the graciousness to NOT supply with a word I can't come with right away. He's super patient and waits until I ask him, "What's that word?? You know..." Sometimes it's laziness; sometimes the word is just nowhere to be found. So, we're a good team in that respect.

 On the other hand....

It is a well-known fact that Steven has legitimate'hearing deficits" - confirmed by a visit to an ENT and scans, etc. He can hear noises in the high range and the low range, but the middle range (the range in which people SPEAK) is hard for him to hear. So, when he started saying, 'What? What?" a lot more to me, it was particularly frustrating since I was working HARD to speak clearly, and was then having to repeat the process. And he blamed it on me talking too softly...yea, right.

But this week, my speech therapist said, "Have you always been a soft talker?" (Wha?!?!) She said she sometimes has to lean in to hear me - in a small room with no windows and only the two of us. Ummm...no, I was never a "soft talker" B.C.
Son-of-a-Bitch!!! Steven's right again!?!? <pouty face> 

So, I have been humbled yet again by this disease and have another goal to work on during speech therapy.The fact is that this experience...is changing our relationship. How could it not? I was going to elaborate on how, but I forgot what I was going to say, so, yea...ask Steven!

Love, June Xoxoxo #mfbcfnw