Saturday, July 16, 2011

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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