Vignettes

The Meaning of Cake:

The new nanny candidate Stephanie was due any minute. Between the day's bustle of karate, swimming, shopping and running around, Ava and I stood in the kitchen catching our breath and talking about chocolate cake.

DING DONG!

All crazy curls and 5 year old drama, Ava yelled "I'll get it!", rushed to the door and flung it open to reveal not Stephanie, but a well-dressed man of Indian heritage whose puzzled look equaled that of Ava.

"Um, Mom?"

I walked to the door and the man looked at me, dashing in my neon-orange do-rag and obviously bald head, and asked "Are you Fran Loosen?"

"Well, yes I am."

"Then this is for you," he said as he handed me a brown craft paper cake box. "Best wishes and ENJOY!" His smile lit up and he turned and walked away.

I looked down to this:

I walked in the house carrying my box, a little dumbstruck. Ally sent me cake. Ally lives in Seattle. I was wanting cake right at that moment and Ally sent me cake and it came like magic in the middle of a day when I really needed a it. And then I started to cry.

Ava looked at me like I was insane, not so much because I was crying but because

"HOW DID SHE KNOW YOU WANTED CAKE RIGHT NOW, MAMA? HOW DID THAT HAPPEN?!"

And I laughed and looked at her through my tears and just said "Sometimes your friends know what you need, babygirl. And sometimes, like magic, things just happen."

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Detailing of Stuff:

Sometimes the things I write here I write because I hope if there is ever anyone out on the web trawling around looking at blogs related to the experience of breast cancer, they will pick up something about my medical treatment and experience that will help them on their journey. The problem with any illness is that information is weird, unpredictable, oftentimes not accurate or difficult to decode. It's really unclear how it's going to map to your life and your own experience, which makes you crazy as you work your way through symptoms and situations.

Starting on Sunday, I once again had difficulty with heaviness in my chest, the same as the last round of chemo. Combined with the freaky feeling of the new port (yes, you can feel the port in the neck...gross) and a dull ache re-occurring in my blood-clot arm, by Wednesday I was pretty freaked out. What if this was something bigger that we didn't catch last time? I had read a little bit about shortness of breath on the cancer boards, but nothing substantial so on Thursday morning I called the oncology office. The nurse sent me to triage who then sent me...yep, to the ER. The ER? Really? So we trundle in, me in my depressed white count state, to sit for 8 hours and go through countless tests to find out that I don't have a pulmonary embolism, no new blood clots (old have not totally resolved), no heart attack, no this, no that... which was all great. But the damn thing was at the end (very nice experience at the UM emergency room), the doc says "Yes, I talked to your oncologist and he said that in fact the Neulasta that you took on Saturday often causes feelings of heaviness in the chest."

Um, WHAT?

I just spent 8 hours and thousands of dollars in the ER for you to tell me that it's likely from my Neulasta shot?

Sure enough, I google "Neulasta chest tightness" sitting right there in the ER and it pops up on multiple sites. Ok, so why isn't this something that you could have told me last time? Or, maybe before I came in today? Because if you'd said "Hey, Neulasta causes these same sensations for folks" I would have saved the trip and felt a lot better about everything. Sigh.

That and it seems that I had a really tremendous bout of reflux that I didn't handle properly ('cause, um, I didn't know I had it), so my low white count self is trying to heal the etched away bit of my esophagus at the base of my neck. It's felt like someone has had their pointy finger drilling into the hollow of my neck for the past 5 days. For those of you that suffer from acid reflux or who have kids with GERD, I don't know how you do it. I feel like someone is trying to choke me every minute of the day. It's horrible.

Not sure where I am going with this other than to basically report out that things are fine, I am hanging in there adjusting meds, figuring out how it's working, trying to make sense of it all. Another chemo next Friday so keep me in your thoughts.

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The Freaks in the Hood:

Finally, a bit of humor. I have taken to startling the neighborhood with my bald head. It's just too damn hot to sit with a scarf on all of the time, so often I just go without. And I am BALD these days. Which the regulars handle just fine, actually, and the kids in the neighborhood have gotten used to it and it's no big deal. Nick shaved his head last week, which was great and now we look like a pair of total freaks. The good news is that I suspect it would be very hard for us to have a real argument looking like this because it would just be too damn comical.

The best part was that on the day that he shaved his head we were standing outside with our friend Dave (who also shaves his head) just having a chat. Three totally bald people hanging out in the front yard shooting the breeze as a group of people (not from our neighborhood) came by walking their dogs. And, man, did we get the looks! Not until later did I realize that we must have looked like some sort of new Burns Park version of the Heaven's Gate cult.  Two people is a coincidence, three...that's a group!

Unfortunately, Nick's head has had more practice being bald than mine has, so he doesn't have the same tan lines that I am sporting, which gives me a particularly bizarre look. Welcome to the neighborhood! We haven't gotten Ava and David to follow suit on the head shaving bit, but I may buy them the little fake bald head coverings just to get a picture. Ava's slightly horrified, but we all think it's pretty much in good fun.

Nothing much more to share from here. Thank you all for your continued love, thoughts, energy, prayers and support. Two down, six (seriously? shit!) to go. I am learning more and more each time. I feel enveloped in love even though the going is rough and there are many days I cannot believe that I am going to work through all of this. What will come, will come. I am just happy to have you with me on this journey.


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Facing what comes

Health update: Round two chemo is done, port installed and we're checking how that's working. The hair is *gone*...beyond the buzz you saw earlier. Things are ok here health wise. Chemo sucks, but you knew that already. More to come on that front, just had a story in my head I wanted to tell today :)



Saturday afternoon I sat in my bathroom and looked at Nick and said "Well, let's do it." It was the first blood-thinner shot I was going to need to take at home and the assumption on both of our parts that my needle-phobic tendencies would keep me from being the administrator of the shot. I'd been really working myself up to this moment and decided "what the hell, I am going to try to do it myself"...and did. It actually didn't hurt at all and I am really just a big baby, but it was a leap for me to just own the thing that needed to be done, even though as I poised that needle above my belly I was scared as hell to do it.

It reminded me of an experience that I had with David a couple of years ago in Tang Soo Do class, one that I have seen a number of times since. The back story has grown a little foggy, but we were at a belt demo at our dojang and the various belts were going up to perform. David was the only student in his particular color class at that point and the instructor had overlooked putting him in the show, completely by accident.

He sat there, huge tears in his eyes, looking at me like "what do I do?" So I kept giving him the signal to hang out, be calm, not worry. The demo segment event ended, he got up and came over and asked me to take him outside where he proceeded to freak out. Master Fancher came out to see what was up and said "well, David, you'll just do a demo now" which for some reason took him into the atmosphere of "NOOOOOO!" sobbing, crying, freaking out. I left him with Master Fancher leaning over him giving him a really solid pep talk and telling him he needed to go do it, even if he was scared. So David came into the room, still sobbing, people were wondering what in the hell was going on and Master Fancher proceeded to tell the group what a great student David is, how he's really a Jedi in disguise and David heard none of it because he was still crying. Master Fancher looked over at him like "ok, dude, let's go" and David refused.

It was horrible.

Then, in a moment of total clarity, Master Fancher walked over, picked David up under his arms like a little kitten, and took him to the center of the floor.

He barked the command of "attention!" and David snapped to into ready stance.

And as Master Fancher called each of the moves, David executed like a total champion with precision, skill and technique unlike anything he'd ever done before. He came into himself in that moment in a way I had never seen...confident, driven, focused and brave. The crowd was on its feet cheering, moms in the crowd were tearing up.  I was completely blown away.

Driving to work today I replayed that scenario in my brain a hundred times, gathering strength from what that experience taught me about facing what comes, about pulling it together, about overcoming fear, about working through something that scares you and not only survive, but to thrive and excel. We are not our fears. We are not our insecurities. We have inner strength beyond our wildest dreams if we give ourselves to test it in the ring.


Just last night, that same special little boy and I wrapped up Harry Potter The Goblet of Fire which left us with a good final thought:  “As Hagrid had said, what would come, would come … and he would have to meet it when it did."

P.S. I wrote a little piece on my experience of taking Tang Soo Do with David for his school's parent blog: http://s-kparentblog.blogspot.com/2010/03/walking-step-behind.html

Se fue

Shortly after I posted the last post this morning I nearly went postal. My hair covered the keyboards, was all over my shirt, in my mouth...gross. I called Nick saying "Do you think the kids will freak if they come home to me bald?" His response was that it was going to happen sooner or later, so it might as well be today.

So I called my girlfriend Lisa who is good with these things and asked her to come over and shave my head. I think she needed a shot of tequila but she got through it fine. Actually, I showed her how it was falling out and she immediately was all "Um, we're so getting rid of that" type of business and started buzzing away. The only thing I had to worry about was her gathering up the hair and crafting some sort of hat for me.

It was short and painless and so for the rest of the day I've been getting used to it.  Here is the result...

I knew that had to get out of the house and into the public immediately or I would totally lose my nerve. What should I wear out? I grabbed my favorite scarf, one that my best girl Sharleen gave me on my wedding day and wrapped it around my head. It feels strange wearing a scarf, I mean, WHY? But I figured that 1) it's something I should try and 2) my newly shorn head would surely burn if I didn't. Then I set off to the one safe place I could go, Morgan & York (my favorite coffee shop) to test out the new look. It was fine. Friends were lovely. Nobody freaked out. Then, emboldened by the move, I drove to Whole Foods to really test the stare factor. A few glances, nothing too bad. Added some 50 protection spray sunscreen to my repertoire and decided to move on to the final test.

I met my friend Joanna downtown for a celebratory glass of champagne. A few hours outdoors in downtown Ann Arbor (under the shade and protected by the sunscreen) with nothing on. No hat, no scarf, just me and some red lipstick and my crazy big glasses. I am sure people thought "WTF?" but it was totally liberating. Not even little kids stared to much. Huzzah!

I'm not sure this is the look I am going to rock all the time, but it is nice to feel like I have options. And, my mother who was so neurotic about keeping our heads nice and round did me so right.

So, I stepped across the crevasse and onto solid ground. It's not necessarily the look I'd choose, but it's the look I have for now and I am going to do the best with it I can.

The Buzz

I am shedding like a Golden Retriever. The floor of our bathroom is a mess of grey and brown hair. It's on my clothes, it's in my eyes and on my face. When I shower I lose so much hair the water can't get it off my skin. The 14th day after chemo hit and, man!, they weren't kidding about the hair taking a hike! I am dying to shave it off but I am worried about trying to do it myself (god, can you imagine?). Besides that, Nick and the kids are in Oklahoma for the weekend and I think it would slightly freak David and Ava out if they came home to me with no hair.

I've been sitting a lot with this today and realizing that there is a rhythm to the readiness of getting things over when you are standing on the edge of a big change. Part of me is really ready to get the port put in and get on with the treatment, although I'm glad we are waiting and testing and trying to figure out why I got this blood clot. It's the same part of me that wants to shave the damn hair already. For as unprepared as I feel to face some of these things, the anticipation is worse. This applies to the reality that in a week I will be shooting myself in the belly every day with heparin, which for a needle-phobic person like myself is akin to, I don't know, putting one's hand in a rattle snake bag. So I sit between the anxiety that comes with anticipation and my mother's no-nonsense "get it over with" attitude, not knowing which way to swing sometimes.

This weekend I elected to stay in Ann Arbor by myself rather than get a last minute ticket back to Oklahoma for our annual 4th of July celebration with my family. I needed a little head space, needed to buy some new clothes, drop off my wig to get cut (still on the to-do list), find some hats and cotton scarves (half-way done, need help on that one!), and send things back to people (dishes, gifts, etc).

I also really needed to be able to sit and think for a bit, re-arrange my brain and heart and mindset around this chemo phase. Chemo is so less tangible than surgery or reconstruction. At my stage of cancer, it's not as obvious why you are doing it as you are treating something that *might* be there instead of something you can touch, feel and see. Watching friends and loved ones go through chemo (and, frankly, still die), I have only seen chemo as a barbaric thing that lays waste people's physical and mental being. I have to keep reminding myself that breast cancer is not lung cancer, that this step helps me be here longer, that my disease is not my mother's disease or Bruce's or Julie's or... This is a different treatment and I know that, but I can't seem to shake the sinister feeling that chemo gives me.

My friend Kim gave me some really good insight the other day that has really helped to shape my thinking today. She told me that I had to stop thinking of the chemo as a caustic, poisonous invasion of my body and instead think of it as healing nectar. Yes, nectar that makes you feel like shit, but a nectar to welcome in to do its work so that I can live a long and healthy life. That is a major adjustment in my thinking, honestly, but one that I know deep in my heart is important. I know in order to make this work I have to ask my body to welcome this substance, to take advantage of what is can eradicate, to allow its presence to do its job. While I think my body doesn't love the chemo, it hasn't reacted to it in all the worst ways (yet? please no.). So I am going to spend today getting in touch with that idea and visualizing how that matter of acceptance could work for me next Friday.

So the next post will be a picture of the shaved head. I've been reminiscing on my fascination with Sinead O'Connor and Grace Jones as a teen. Who knew I'd be mimicking them at 40? Forty and sporting a buzz cut. Call me GI Jane.