Recovery Road

Ok, I’m not a good patient.  But it is such a weird space to just put your life on hold for 6 -8 weeks.  Many things in my life that normally define who I am are gone or changed/shifted – being active, dancing, my clinical work as a counselor, etc.   In a way it’s like how I have felt when I have lived abroad – when your friends and families reflection of you is no longer constantly being upheld and you have this blank space from which to create your identity.  It is overwhelming but also a refreshing opportunity…a chance to challenge or examine who you are, your choices, actions, habits, and beliefs, and re-create or refine yourself in these new circumstances.  Unfortunately, my analogy is limited in that I am not eating gelato in the piazzas of Italy! :)

But my usual resources of moving and being active are unavailable so I am learning new methods to resource and support myself.  Watching some new series was good for the first week or so when I was in and out of sleeping and in so much pain. Recently I started watching some Ted talks and listening to inspiring podcasts and that have been helpful.  Here is one that I watched today – a fascinating look at new Breast Cancer screening tools beyond mammography – and once again, I am met with how lucky/blessed I am to have found this cancer when I did.

Ted Talk – A test that finds 3x more breast tumors, and why it’s not available to you

I also really identified with this talk – from an Indian Dancer who used dance as her form of moving through her Breast Cancer.

Ted Talk – Fighting Cancer with Dance

Having to accept my limitations at the moment is humbling.  Doing the most simple daily household tasks is not only challenging but exhausting.  My friend said to me today that she heard from a doctor that it takes at least 3-6 months to fully “be yourself again” after a big surgery.  I sure don’t feel like myself right now.  I feel tender, raw, open, and emotional.  I feel shy and humbled as I get to know my new body – as I integrate and process this experience.  As like most things in life, you really don’t get it until you go through it, but I do know that this experience will only broaden my compassion and understanding as I work with others in finding their optimal health through movement and counseling.

And I learned from my dear friend that there is “post surgical blues” so as I often say to my clients, naming it, acknowledging it, and normalizing it can help.  I know it’s all part of the process but that doesn’t make it easy – especially in the moment.  Yes I have moments of frustration with my body but I also have moments of fascination – like sensing when I can lift my arm just a little bit higher than the day before…and this reacquaintance with my body and my movement is like a full rebuilding or re-learning that I know I will be stronger for.

Off to “leg snuggle” with my kids and watch a movie. :)

My Mom Rocks

Day 10 post operation and feeling a bit low today.  Kind of strange because yesterday was such a good day.  I got my drains out and that was such a relief.  Taking a shower after 10 days made me a new woman!  My mom and I walked in the afternoon, had a visit with some friends, and then we came home and the pain set in.  This was a new kind of pain and I’m sure my body is adjusting to life without those drains.  I mean the nurse literally pulled out a foot of plastic tubing on each side.  I gagged – I am definitely not meant to be a nurse.  Last might my back began to ache and my sides felt so swollen.  And I just felt emotional.  I know it is all a part of the process so I am just riding it out.

Some of the emotion may have been that my mom left today.  Having her with me for the last 2 weeks has been so very special.  Like she says, “out of the bad, comes the good”.  We walked and watched series on TV (Transparent is amazing if you are looking for a good series btw), and laughed…but most of all, it was just such a comfort to have her there.  Strange to not be able to just reach up and grab a bowl from the high cupboard or open my own pill bottles…and she was always right there to help me.  I know there are lots of friends and of course, AJ here for me now but I am so grateful to have shared such a challenging but meaningful time together with my mom.

Just returned from my first outing.  Went to Avery’s performance after a week at rock and roll camp.  She is playing the bass. How awesome is that??  Avery said, “Mom you look so normal”.  So I guess that’s good! :)  Then she said “I’m so proud of you”.  Yes I welled up with tears when she said that.  Here’s to moms everywhere!

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Hello Again

Yes, that’s right…I know you all were loving AJ’s blogs (because besides being good at every sport he touches, yes, of course, he is also a great writer)!  And by the way, he could also have a career in nursing.  He has been tending to my every need and seems to have an abundance of patience and tenderness.  My mom is also here and she is Queen of the laundry, dishes, and she greets me each day with a beautiful fruit salad and green smoothie.  Plus she has been my partner in movie watching (most of which I fall fast asleep during)!

Day 6 post surgery and I am feeling pretty up and down, but my general direction is certainly up.  My worst day was Thursday in terms of pain and discomfort.  There were many tears.  But then, as you all know, it also became my best day – a day I will always remember as the day I became cancer free – July 9th!  Lots of tears of joy and relief after I heard the good news from the nurse.

Quite a juxtaposition….similar to the polarities of pleasure or feeling good and pain or feeling bad. I’ve been super curious about the whole concept of pain.  Cause I’m in a whole lot of it!  And there are so many thoughts about pain.  It seems it’s like a badge of honor when people say “I didn’t even use pain meds” or “you are strong so you won’t even need the pain meds”.  Well, guess what, I am super strong and I definitely need the pain meds and am thrilled that I have this tool to get me through these days.  I preach and practice listening to my body’s wisdom so why would I stop doing that now? My body is giving me messages by saying “I am in pain” and I am listening to it and responding by providing it relief.

I just had a conversation with my Nurse Navigator (don’t you love that title)!  She is basically like a Social Worker so of course I love her.  She said that the health care system is used to seeing patients in poor health who are in some ways really used to living in pain.  It struck me that people in good health who are used to feeling good probably have a harder time with pain as it is quite foreign to them.  People in poor health who are constantly in pain are accustomed to pain as it is already familiar to them. This is true about a lot of things in health.  I am used to eating healthy so if I suddenly were to eat McDonalds, I would probably get sick.  Someone who is used to eating that way every day probably wouldn’t even have a response to that food. Like I often say to clients, our bodies are like little computers and so they organize around what is familiar to them.  My goal is to continue to have pain be something that is foreign and pleasure and comfort be something that is familiar. I will do this by listening to my pain but seeking pleasure and comfort – just like my Nia practice has taught me to do over the years.

Tomorrow I have my follow up apt. with Dr. Johnson and I am really hoping to get my drains out as they are super uncomfortable at this point.  My goal for today is to walk 3-4 blocks.  Crazy that I did a 6 mile trail run last Monday and this Monday I am hoping to walk 4 blocks!  But I also see this as an opportunity to really build myself up from ground zero.  And now with the cancer truly behind me, I begin my journey of rebuilding strength, mobility, pleasure, comfort, and ease in my body.  And now I am off to start a new series with my mom – or perhaps fall asleep! :)

JUMP!

Despite having a bit of a rough day, we just got some wonderful news.  We heard from the doctor and Erika’s margins were clean, the cancer is DCIS and not invasive, and that her lymph nodes were cancer-free!!!  What does that mean?  1) Her margins are clean so she gets to keep her nipples.  2)  The cancer was contained in the ducts … which are now gone – so she can stop the drug therapy (we think).  3)  No need for chemo or radiation.  So, in a nutshell, she’s done.  We couldn’t be happier.

Thanks for all of your prayers and well wishes… they were answered.

-aj

Room 683

It’s not quite a room with a view, but the food is good (I should know … I made it :) ).

Eri slept well last night and is looking better and better.  She’s got her color back and is beautiful as ever.  She’s in some pain, but as far as I can tell it’s not horrible.  The first thing she asked for was a soy latte, so I think her tummy is doing ok too.  We just put a DVD in to learn about exercises and she promptly fell asleep.  Great to see the anxiety lifting.

My heart goes out to everyone for all of the love and support.  You all mean the world to us!

-aj

Update on Eri

It’s been a marathon day, but I’m ecstatic to say that Erika has emerged from surgery, groggy and in pain, but in good spirits.  The surgery was a success, and most importantly, her lymph nodes look good.  We won’t know for certain for some time (could be up to 3 weeks) but the surgeon was pretty confident that the nodes were clean.

I am so proud of my beautiful wife and so happy that she is now starting down the other side of this endeavor.  I know that there will be ups and downs in her recovery, but knowing that the waiting is over will be a huge burden off her mind.  And, for that, I couldn’t be happier for her.

The staff at the hospital has been so caring and attentive, capped off by the wonderful Dr. Nathalie Johnson who, seeing that Erika was feeling scared just before going under, broke into song and totally calmed her.  It was “My Favorite Things” which was so serendipitous because we just watched The Sound of Music.  Rock on Julie Andrews!

As for me, I am so happy to be with her right now.  She’s pretty sleepy, and looking a little green-ish, but she’s my angel and knowing that she is safe and on the road to recovery is all I could possibly ask for.  I’ll send another update tomorrow.

-aj

Game Time

7 am and I awoke at 6…not bad.  But man is this waiting strange.  Once again, it reminds me of pre-birth time (especially with Zander) as I was 10 days overdue and was just waiting and waiting.  I remember taking endless walks, writing in my journal, getting my favorite coffee drink at Coffee People (because I figured he was already over-formed)! :)

It’s almost a spiritual place – this waiting, this anticipation.  It is like everything slows ways down and time stretches out for miles in front of you.  I feel a draw inward.  I felt this often on the cruise (which was not always easy with my family of 12 and a cruise ship of 3000)!  But also, the distraction and being together was so very needed too.  There is this Yin or inward energy that surfaces and anyone who knows me knows that I am quite Yang!  So, this space is different for me. Of course the distractions help – like going to Costco yesterday (not a very Yin activity).  Ha! Just stocking my house for my family though somehow made me feel more prepared.

Sitting on my porch in the quiet early morning and feeling the sun shift and change and the heat return, listening to the variety of chirps, and watching the bikers go by…while my family continues to sleep…this is peaceful.  Shortly, I will have my morning smoothie, and then receive an acupuncture treatment.  I will take a final solo trail run up at Forest Park and undoubtedly, this day will move slowly but soon enough it will be surgery time.

So now I wait.  At least with this I know that tomorrow at 9:30 am I check in at the hospital and the surgery will begin at 1:30. With my births of course, it was truly a mystery as to when and how it would all go down.  One great feeling I have at the moment is conviction.  I had several conversations with my family on the cruise about other treatment options people might choose, etc. and it brought up for me the fact that I feel so certain and confident with my choice and treatment team.

For me, having this surgery feels like I will really be able to put this behind me instead of constantly monitoring, wondering, checking…and living in fear and uncertainty.  I know that is all somewhat an illusion anyway but it feels like in terms of focus, I will get to bring my attention back to my family, my work, and the things I love.

Well, first things first, a good cup of coffee instead of that brown water they served on the cruise! :)  Sending so much love to all – I feel so incredibly loved.  AJ will be updating this blog during and post surgery.  But you never know I may still post again today seeing that it will be along one! :)