Chemo #3: Done!!

My sister Joan came up from the East Bay to go with me and aside from some high blood pressure scores and a delay because of it, things moved along pretty seamlessly.

Leaving the chemo lab around 4PM Joan and I walked around Spring Lake so she got to see my playground for walking.  She did good and so did I!

Then day 3 & 4 hit and it felt like the darkness was never going to lift.  It was pretty brutal but in this bazaar land it can be like that and then poof it morphs to something else.  Holly was my angel carrying my wings during that time, sitting with me and reading me poetry.  One of my long time favorites, Kindness by Naomi Sahib Nye  among them.  Both of us crying,  not only from the sorrow but from the sweet depth of the piece. 

Later, when I felt better we came up with a little rhythm for the days following chemo that I think is kinda fun, the ups & downs on this wild ride:

Day One (chemo day) Here comes the fun!

Day Two – at least I poo’d!

Day Three – we’ll see….

Day Four – Hit the floor!!

Day five – barely coming alive

Day Six – all fixed

Day Seven – not feelin’ like heaven

Here’s something I’ve learned that I was reflecting on last night.  Maybe it’s part of my makeup; maybe it’s part of this journey.  That is, there is this duality within the mind (at least mine) and when the dark forces of chemo overtake me there arises also a distain for just about everything including humanity in general.  My tolerance level is zero, my sensitivity is high, and I generally see only the negative in what I encounter, in what I see before me, and in the thoughts in my mind.  It’s quite unsettling and sometimes I handle it with grace, noticing it and not externally acting on it but other times…well, not so much.  I could chalk it up to feeling lousy and weak, or being grouchy but I really think it’s more than that.  It feels like a dark force and I am somehow in the underworld.  Then at some point, the grouchiness starts to fade away and out comes the sweet opposite!  What I see before me is beautiful, beyond words beautiful, I see the miracle of being human, frailties and all, and I see the good in people.  It’s quite interesting and my conclusion is you just can’t trust the mind, especially in the dark places. Also untrustworthy is that any mindset is fixed, that we are all creating and dissolving our realities as we go.  I’ve known this for quite some time but I’ve had such a strong direct experience, the truth of that has penetrated even deeper. 

And speaking of the mind, what’s up with the memory thing?  I’ve heard about chemo brain but really!  I can’t be trusted to remember much of anything, even moment to moment.  I was really scared of this before because my memory hasn’t been so great anyway right?  But I take it in stride now and at least I have something to blame it on!  Sorry!...Chemo brain!  I’m noticing how very patient my kids are with me; this is something new and they actually let me repeat myself or they repeat themselves knowing I didn’t remember from the last time they told me the same thing. Ha Ha I love this and do hope they continue even if I won’t always have this excuse. No more "mom, I've told you that how many times before!"

Yesterday, still feeling funky (and with that negative mindset I talked about earlier) I rallied to go to Ruby’s Arabian Nights performance at her school.  It lifted my heart and made me smile down to my toes.  So delightful and her energy, beauty and excitement was so contagious.  The best medicine ever!! Talk about a turn-around!! Hope the short 30 second video works.

Kitchen update: As of today, we are still without a working kitchen but the end is in sight.  Maybe even by tomorrow!  The floor is finally in and now there’s a few finishing things before the appliances get moved back in.  Seems the kitchen is much on the same schedule as my chemo regime.

I continue to feel very blessed by my friends who check in, wishing me well, ready to help.  Also to Holly, who I now refer to as my new mom.  And to Heather for all she’s done on the kitchen and to Bryan for rolling up his sleeves and taking on the whole backyard and anything else that needs done. And to my precious Ruby for bringing the light into the darkness.

So that’s the update for now.  Not much to write about which is a good thing.  And the best of all…..ONE MORE TREATMENT TO GO (May 3) and then NO MORE CHEMO!!!

Excitement in the Chemo Lab!

 

Here we are, seven days post chemo #2.  This time both Holly and Bryan went with me, first to the Oncologist appointment, then the chemo infusion lab. I kept watching Bryan for the jarring reaction of entering into this strange land.  Holly and I had slid into the world, first a little horrified, then warming up and here he was getting a full dose all at once.  He seemed to take it all in stride though.

Things were rolling along quite well, spirits up, same wonderful nurse Lee who has just the right amount of brightness and efficiency and attention, making the experience seem almost normal.  She started the IV, took a photo of the three of us and then began the Taxatere.  Three minutes later, as she stood chatting with me, my chest started closing in, I turned beet red, and I stopped her mid sentence, something “wasn’t right”.  I noticed her eyes bulging out and then there was a flurry of nurses surrounding me with machines, blood pressure cuff, and a new bag of IV.  Yeah, although they weren’t expecting an anaphylactic shock on the second treatment, there it was in full bloom.  My body was screaming “NOT AGAIN!!!” even though my mind was seemingly ready.  With some Benadryl to trick the body we started up again a half hour later and this time body stayed quiet, taking the medicine like it needed to.  Nerves however weren’t quite so at ease.  Welcome to chemo lab Bryan! Needless to say, that shook me up a bit. I had considered going on my own just the week before, thank God I didn’t and had my two angels with me!  I worked hard at sending love to the IV. The last thing I wanted was to postpone chemo (a possibility) pushing the whole schedule back (I want this over, right?)

Just before the big reaction

This week post chemo has been more intense.  Whether this is the cumulative effect or the trauma of going into shock or both is another mystery, one of many during this bazaar journey.  Waking up this morning, day seven, the fog seems to have lifted, the nausea is absent and I’m actually enjoying my cup of coffee! Woo-hoo!  I know this will at some point today give way to profound fatigue out of the blue but ah these moments of normalcy are so wonderful!

And the good news is I am HALF WAY through the Chemo part of the journey.  I’ve learned from the first two treatments that although the first week is a struggle, uncomfortable and just all around sucky, the second and third week get better and better.  Little set-backs here and there but manageable.  This brings me to a call-out for help during that first week especially.  Several friends have said “just call if you need anything” or “let me know how I can help”.  So, this is what I need: someone to call each day to check in and see how I’m doing; if there’s something I need done that’s hard to do myself, to arrange it.  My friend Cynthia started a list with me that includes things like Library runs, a ride to an appointment, tidying up, water delivery, flowers, book suggestions, company, going for a walk, or going to the grocery store as examples.   A follow up email will go out in a bit from someone to create a schedule of ‘calling angels’ so that there’s someone calling each day but that I’m also not inundated with too many calls.  The next chemo date is April 13 so we’ll begin then.  Whew, a little hard to put that out!  I’ve gone into this knowing this journey will change me, and that my identity of holding it all together will be challenged.  Reaching out is not one of my strong suits.

Meanwhile, I’m still walking most days, now more in the ‘gloaming’ time of day.  The time of day when there is the soft glow, red sky reflecting on the water, day transitioning into night.  A few days ago as I was slowly ambulating around the lake, I stopped many times to marvel at the beauty, taking photos that could no way capture the perfection of what was before me. Unexplained tears that I can only identify as a mixture of gratitude, grief, and the preciousness of life flowed freely, as if softening my edges and somehow preparing me for more of what is ahead.  I’m learning not to question these emotions but rather to just let their sweetness be. 

And life goes on.  The kitchen countertops finally arrived yesterday and I’m hoping now to unload the boxes (slowly slowly) to place inside the cabinets and drawers (anyone good at organizing?).  Still to go is the floor and tile so although we have a sink and hot water, there’s no cooking yet.  Holly leaves for a much needed 10 day retreat on April 4.   Bryan has been enthusiastically and with great joy working in the yard every day.  Several projects and creativity and a new love for working the land has emerged for him.  Heather has moved from what was becoming a difficult situation to a lovely flat with a community of women around her.  She and I are dreaming and formulating a living room transformation (mostly via Pinterest) together once this kitchen is done, very fun and for once I’m not so worried about expense.  We are all pretty much in the process of leaving an ‘old life’ behind, living in what is called ‘the in between worlds’.  What is to come is unknown to all of us, which is a little scary and a little fun, my long-time description of an adventure!

At Holly’s studio where I’m staying (we’ve named it “The Retreat Center”) I’ve been nourishing seeds, spraying them everyday and patiently waiting for little sprouts.  Marigolds, Sunflowers, edible flowers, and peppers are just beginning to show themselves as baby seedlings.  I love this, new life and the hope it represents. 

That’s my check-in for now.  More in about three weeks.