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. 

Chemo Treatment #1: check

Day 12 since first Chemo infusion and feeling quite well!  This is such a strange ride, never knowing when my energy will rise and when it will fail me.  I can wake up in the morning feeling like it’s going to be a good day and then bam! A few hours later I’m thoroughly and utterly fatigued.  Then I’ll rally again and this can happen a few times during the day…or not at all.

That first week there was a lot of fear and anxiety as my body and my mind were trying to adjust to “bazaar-land”!  You know I’ve never had anything serious go wrong with my body or my mind for that matter.  I’ve always dreaded getting the flu because I’m such a baby about body discomfort and just don’t do “sick” very well.  When I was in Mexico last year and got food poisoning I thought it was the end of the world and was definitely not a “brave little soldier” about it.  My friend Susan can attest to this as she would come back from shopping for a remedy to find me balled up in tears.

So, trying to ‘be’ with each oddity and discomfort without freaking out was, I knew, going to be a challenge.  But the worst was not knowing what was coming.  Would I be nauseous, in pain, wiped out?  I decided that I’d work on just accepting each thing as something that would pass and be kind to myself in the process.  Yeah, let’s see how that will go!

Challenge #1:  The mere fact of arriving at the Chemo Lab.  Holly and I had done an orientation the week before and found the Chemo Lab at that time to be a combo of “heaven and hell”:  super nice nurses and super sick looking patients. Even though the patients smiled at us, it was scary scary scary!  But the day we arrived for my first Chemo treatment it was very different.  The man sitting next to me in his chemo chair was doing business deals and didn’t look so sick at all.  The nurses were kind and supportive and informative and the three hours passed pretty quickly.   We even ate our lunch while getting chemo.  Anxiety calmed, not so bad!

Challenge #2: The Neupogen shots.  Ok, baby that I am, even with training there is no way I can give myself these shots that have to be done for five days post Chemo. Holly, bless her heart, said she would give the shots and on day one she easily did just that.  Ah, but day two she had to go to work and at the last minute I had to do it myself.  Well, that didn’t work out so well as all training went out the window, I broke the shot, and was reduced to tears and feeling totally helpless.  Of course I didn’t know I closed the protective covering over the shot deeming it unworkable so spent a good amount of time shakily trying to figure out what I did wrong.  Luckily Heather & Ruby were on their way over for a play date with Gramms and Heather saved the day by conferring with my friend Marietta back East and just giving me another one out of the fridge.  Easy-Peasy in actuality, but in my mini-panicked state it was an utter disaster.  Reality checks are so good and necessary!  We were able to go on and have a wonderful Art session, Ruby & I, painting together outside.

Challenge #3:  The funky-ass taste in my mouth and then getting the beginnings of Thrush.  Water tastes like crap, stomach and body feel like the last stages of flu, and at times I feel weak as a kitten.  The Thrush was the worst though but thanks to Marietta again, the probiotic mouth washing did the trick and a couple of days later it was gone. 

All that was in the first week post Chemo.  Going into the second week, each day I have been getting stronger and with that, my confidence grows too.  So all in all, it hasn’t been so bad.  The fear and anxiety has settled down and there are so many blessings, not the least is the encouraging and caring emails from all of you.

Blessing #1:  I have been staying at Holly’s little studio apartment while the kitchen remodel is still going on at home.  It is such a healing sweet environment, right across the street from Spring Lake and Annadel State Park.  Every morning, I can walk across the street and go around the lake.  It takes just under an hour and the beauty of Spring is overflowing.  Walking every day, I see the rapid progress of blooms bursting open and this is the first year I’ve seen a family of beautiful swans in the lake.  Really, it is breathtaking and such good good medicine.  There was only one day that I had to make about three stops to rest to get around but every other day I feel myself get stronger walking. 

Blessing #2:  All the emails wishing me well have given me such support, knowing I am being prayed for, thought about and that I matter; it is so uplifting. I haven’t had the energy to have full on conversations with anyone other than immediate family so the emails are the way for me to stay connected.  They have been so uplifting and I look for them in my inbox each day.  I feel my angels at work on my behalf.  Thank you thank you!

Blessing #3:  The grants and non-profits that support Cancer patients here in Sonoma County: unbelievable!  I am receiving organic and sustainable meals each week from Ceres Community Project (Cere's) that are both nutritious and delicious.  Teens from the local high school prepare the meals and volunteers deliver them each week in containers to be easily reheated.  OMG so good! 

Blessing #4: Then there’s Sutter Health (Sutter) that through a grant offers six sessions of different healing modalities to complement treatment.  I’ve signed up for Acupuncture and Massage along with a couple of sessions of therapy.  Every Saturday they offer Yoga and/or QiGong for Cancer patients too followed by an informal gathering with food brought in by Whole Foods.

Blessing #5:  Parkpoint Health Club (Parkpoint) which I have belonged to for awhile now.  For Cancer patients they offer free membership for a year while going through treatment.  Besides the free membership they also have special classes just for cancer patients including weight training, qigong, and yoga.

Blessing #6:  Our friend Frank has been meeting Holly, friend Hisayo and me at Spring Lake twice a week to lead an hour of QiGong practice.  Such a gift and again, good medicine for the body, the soul, the mind.  I feel so refreshed after!

I guess to sum it up for this first go-around is there are definite challenges but many more blessings.  When my energy is good, and even when it’s not, I am aware of the sweetness in people and the beauty of nature.  Heather, Bryan and Holly continue to look after their mom in their own nurturing ways and my sister Joan has been checking in with me daily.  And also, what better time to be going through this than Spring, showing the promise of new life.  May we all know the blessings of what is truly important in life!

love to all my angels,

Jocelyn

Before the first treatment...it's a process

I’ve never done a blog before (nor navigated breast cancer for that matter) but my beautiful and talented daughter Heather set up the template and gave me a few short lessons so here we go!  Actually Heather’s 10 year anniversary from her own cancer, Hodgkins Lymphoma is this year so she’s not only a mentor that did her own blog, she’s walked this path before too.  I also have to mention Ruby, my granddaughter for her help in naming this blog….love it! Yeah, oops is right!

So as a starter, here’s a recap of the events leading up to starting Chemo tomorrow:

January 28, 2015:  Suspicious looking mammagram, followed immediately by an ultrasound, then a biopsy.  Viewing the ultrasound screen, I saw an odd shape like a duck in water and knew intuitively that was no ducky, it was cancer.  This was probably the worst day of all so far.  I felt I was falling deeper and deeper down a rabbit hole into a bazaar new life.

January 29, 2015: Driving with Heather, phone call confirmed: Yep, it’s cancer. With what they knew, IDC (invasive ductal carcinoma) stage one, grade three (most aggressive), 5% estrogen receptive. 

February 4, 2015: Surgery Lumpectomy with removal of the sentinel lymph node. The tumor was larger than first thought and it had infected half the node. Now it’s staged at 2B, grade 3, 10% estrogen receptive. 

February 9-27:  A series of tests including a whole bone scan and contrast CT scan, luckily nothing definitive detected.  There were also 2^nd and 3^rd oncology opinions, and lots of consulting with my best friend Marietta, a functional nutritionist. So many ups and downs emotionally, with spontaneous unexpected bouts of crying in between activities.  Honestly, I'd be singing one moment and crying the next, never knowing quite when that would happen.

Meanwhile, starting February 14 my kitchen remodel officially began after months of planning.  With the kitchen wall coming down and the interior completely demolished, it felt very much like a metaphor of how my life was taking shape.

How does one get through this?  My loving family and you guys, my friends are my angels.  I already am experiencing the gift of angels around me wanting to help, offering encouragement and lifting me up.  My daughter Holly, my beautiful angel, has taken on a motherly role, going to all the appointments with me and helping with food in my temporary camp kitchen.  She has been the calm presence, clear and wise and so loving.  Heather continues to be my designer for the new kitchen, keeping me laughing all the way.  She's ready to move onto a new living room for me now. :) She was there for the first appointment with the oncologist taking copious notes while Holly held my hand.  While all this was going on, my son Bryan was in Honduras on a long venture, rethinking his own life and basking in island life.  This gave all of us great joy in imagining him being buffered from this difficult task of coming to terms with the journey about to take place.  He arrived home February 24 and the next day joined us on this new path.  Talk about culture shock!! He climbed right on board though with a "can do" attitude that "we're going to get through this".  We are all happy he is back home, and can help hold the healing about to begin…for all of us.

Last week, with the encouragement of my dear friend Scott, the four of us went on a Day long vision hike.  Scott leads vision fasts through the School of Lost Borders and set up instructions for us.  We started out at dawn, hiked up into Annadel State Park where several paths diverge.  There we stated our intentions for the day and set off on our own, to meet back at 2PM and head down to Scott’s house in Petaluma to “story-tell” our day.  The day for me was coming to full acceptance of letting go “life as I knew it” to fully embracing this strange land of the unknown. 

Sun shining on braids

Clearly, the most symbolic thing representing my “old life” was my hair that I was told will disappear about 3 weeks from now.  There, on the trails through Annadel I struggled with letting go of my hair, the chosen symbol of my life. The build up of grieve was palpable. Waves of anger, then denial, then profound sadness and tears, but then gradually acceptance began peaking through.  I waited for the right time, and with great kindness, lovingly cut off those braids





What I felt was RELIEF!! I felt free and actually happy.  There had been such suffering, clinging to the old, not accepting what was obviously before me.  Now I could begin, I had a part in creating this path making the choice to let go of my hair myself.  









Now it was time to turn to what was ahead and embrace this new path.  I had brought with me an old death mask I had formed to my face over 10 years ago that I never decorated. 

I painted and pasted hearts and pretty things, including lipstick to remind myself that hair isn’t the only beauty available (hey, not that my particular hair was all that great!)  But I felt a deep happiness, much like the happiness I have felt in deep meditation during retreats and that has nothing to do with external events.  An inside job.

The four of us met back at 2PM we had a bite to eat, all exhausted from the day, then headed down to Scott’s.  The gift of Scott being able to mirror back each of our stories and how they interweaved to form a healing circle and partners in this journey was beyond words.  In those two hours with him, listening deeply to each other, we bonded in a way that was, for me,  quite profound.  We gained strength from each other and I can honestly say we are all ready.

So, that’s the short of it.  Tomorrow is the first of four (hopefully only four) chemo treatments.  I have embraced Chemo as my friend and it is what will ultimately give me life.  It is strong medicine but it does work and is the path to wellness.  I am hoping to meet each moment with kindness and with patience, knowing the medicine is doing its job even if it doesn’t feel like it. 

It is very clear to me that my angels (that’s you) are the most important part of this healing journey, whether its words of encouragement, a laugh, going for a walk with me, a hug, food, flowers or whatever. Earlier on I was sent this song; I feel like it’s my theme song for this journey.  If you want to listen to this beautiful piece click here.

Your messages and voice and person mean a lot to me.  My wings are strong right now but I'm not sure they always will be.  I may need to borrow a pair of yours sometime! :)

Please....leave comments here or email me.  Love to you all!