Well….there go the breasts!

It’s been a month since my last update and there’s a whole new person emerging too. 

Going into Surgery a little loopy

My last chemo was May 4 and the bilateral mastectomy with nipple saving reconstruction (that’s a mouth-full!) was June 19.  We decided to also remove the axillary lymph nodes instead of doing radiation post surgery.  If the nodes had any cancer cells, we would do radiation though.  I just got the biopsy results back and all is clear in the node department!  Yeah! So no radiation for me!! 

Walking the Hallways with some help

 So far, recovery is a lot easier than I thought it would be and aside from dealing with the brain fog of pain meds and some associated nausea it’s been pretty manageable.  In the hospital, my competitive side came out as the nurses told me I was doing “so much better” than the other two women on the same floor post mastectomy.  I was up walking on day one and even managed a conversation or two.

I do have to give credit where credit is due though!  Ruby (my eight year old granddaughter) is what pulled me through, especially that first day. 

She was amazing the days before, during and after surgery.  Before she was a little anxious, wanted to be with me a lot.   She was worried that I wouldn’t know her after surgery, bless her heart!  When she came in an hour or so after surgery I tried really hard to be ‘perky’ and definitely made it obvious that I knew her!  Each time after that, she would come into the room, put on rubber gloves, update my board and precede to fill up the water, get my bed “just right”, and arrange my pillows.  She of course was in her nurse scrubs (left over from a past costume). Her nurse names were “Nurse of creative attitude” and “Nurse of making it feel like home” She was the most excellent medicine! 

The Board, notice my Name

All three of my kids and my sister were in and out of the room along with our good family friend Sabrina.  What a difference having people that love you there.  As I made my walking rounds on the floor I noticed most patients were alone in their rooms.  I was wishing I could send Ruby in to one of those rooms! 

 

Discharging Home

I was discharged home the day after surgery and was amazed at the good night’s sleep I got once I was home (not so much in the hospital!).  Did you know that home is a much safer germ environment than the hospital?  Germs at home we’ve already been living with; hospital germs are heavier, meatier, and heartier and one can end up with some pretty nasty stuff.  This was very comforting to know as I snuggled at home with my two doggies, one on each side, something I thought I would have to forego for a while. 

This is day 5 post surgery and the first day without pain meds! Yeah!  The fog is lifting and I’m walking a little more each day. Six months from now I will have an ‘adjustment’ minor breast surgery to complete the work done this time.  At the same time I’ll have the Oophorectomy  (ovaries & tubes removed) that is also a relatively minor surgery.

So I’m hoping to have some kind of celebration the middle of August, both to celebrate turning 70 (July 10) and entering into true elder-hood cancer free.  Watch for an invite and regardless of whether you can be there physically or not, know that your support has been invaluable to me.  Thank you for walking this journey with me.

Many blessings,

Jocelyn

Roller Coaster rides are usually fun right?

Maybe a little scary but that’s part of the adrenalin rush.  The roller coaster of Cancer though is a deadlier game and when the descent happens, one doesn’t know whether there will be an ascent or a crash into the underworld for good. 

Post Chemo, I had barely a minute to celebrate before further discoveries slammed me deeper than ever into hell realms that psychologically and emotionally pulled me from the world of the living to the world of the dying and despair.  But hold on, it turns out better than that so keep on reading!

The first blow was getting the genetic testing results and finding I do have a hereditary mutation called PALB2, a partner gene to the BRCA2 mutation.  Although it explains why I got breast cancer, which cleared up some of the mystery, there is the brutal statistic that I am now at a fairly high risk for recurrence.  The Oncologist and Surgeon both recommended more drastic measures to decrease the risk, including a bilateral complete mastectomy along with removal of my ovaries and fallopian tubes, called an Oophorectomy.  This is no minor surgery, about 7-8 hours in the OR.   What the f****!!!!

But wait, that’s not all!  While I was trying to work with the intense grief around losing my breasts and the scariness of surgery and recovery, I got even more bad news.

A CT Scan was done last week to make sure my lungs were clear, as they had picked up two undefined spots prior to beginning chemo.  They wanted to see if they changed at all.  What they found was a new spot that they hadn’t seen before and that was “of concern”.  So now they are suspecting lung cancer or breast cancer cells that escaped into the lung that the chemo didn’t get.  This is the part where I lost it completely!  A herpes outbreak happened that day, zapping my energy even more.  Anger and despair, depression and tears overtook everything.  Losing my breasts took the back seat and my attention turned to wrap myself around this bad news.  Memories of my mother dying from several unidentified cancers in her body and lung cancer (a nonsmoker) arose and I felt I was on the same track.  She died 6 weeks after discovery, she was my age and in the middle of her life.  A PET scan was ordered and I had a very bad feeling of what the results were going to be.  Talk about being pummeled down beyond what is bearable!  I looked at ‘life’ around me, people buzzing here and there and felt myself pulling away and separating.  The impermanence of this life penetrated even deeper, and not in a good way.

But here comes the roller coaster, roaring up from the depths of the underworld with the news the PET scan did not “light up” any cancer activity.  This was very good news, one that took awhile to sink in.   My Oncologist called and was also very relieved and happy.  Looks like I’m back to having just the run-of-the-mill Breast Cancer after all.  I’m still ‘rattled’, body is still weak, and I haven’t quite joined the living yet but I also know that I will take my place there again and carry on. 

My team at Kaiser is most excellent and I have met with the plastic surgeon who will be reconstructing my breast in the most natural way possible.  He is newly hired at Kaiser Santa Rosa from Harvard Medical School where he held a faculty position, working with and training the best surgeons in the field.  His expertise is in breast reconstruction.  I totally trust him.  I do have to say though I have never had anyone look at my breasts quite like he did.  I could barely contain a deep giggle that only my sister could understand!  Giggle aside, I am more accepting of losing these body parts so that I have a better chance of living a longer and healthy life.  The sacrifice is well worth the price of life.  Surgery should happen in the next 2-3 weeks once my white blood cells reach a good level.  Somewhere between June 8 & June 15 is my guess. 

Meanwhile, I am trying to build my weak body up with lots of veggies, wheat grass, and supplements.  It’s slow going but I see progress.

Today, I took a Cancer makeup class to cheer myself up.  I’ve been wearing what seems like my ‘cancer uniform’, and definitely haven’t bothered with makeup or looking good.  My real hair should start actually growing back in another month or so.  I’m pretty sick of the cancery look of the bald head and scarves!  So, what do you think? Still need some earrings.

That’s my update for now.  Thanks for stopping by and reading.  Positive, encouraging comments/emails are much appreciated!  More later, probably before surgery.  

I graduated from Chemo!!! Woo-hoo!!!

This is a short post to just mark the END of this first leg of the crazy adventure I’m on.  Today went without a hitch, I even fell asleep in the middle of chemo, veteran of four now and know the ropes.  I think of the people that have to come back for much more and my heart goes out to them. The nurses in the chemo lab are true heroes too!

I think of the different certificates I’ve received in my life, how hard I’ve worked for some of them, others not so much.  This IS a certificate of completion of a difficult but rich course and hey I’m proud I came through with a good amount of grace intact! My favorite sticker they gave me was "You can't scare me, I've been through Chemo!".

Holly is my rock, my angel, my mom through this.  Good loard! I would have been a mess without her!  She is such a precious gift.  She and I spent last weekend up in the Cazadero mountains at a QiGong retreat.  She is in a certification program and I got to tag along.  We did lots of QiGong in clear mountain air, beautiful weather, beautiful healers and lots of good Qi directed at me.  Stopping a Kaiser Sunday on the way home to do the pre-chemo blood labs, I was surprised when I got the results and they were all really good.  Everything within normal range and the immune system working good! 

So, there will be more but for now I’m celebrating this part as OVER!!!  And who cares if I get the funky’s for a few days – I don’t have to go back!!  Yippee!!

Stay tuned for part two.

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.