The Never Enough Doctor

Two days ago I went to see my physiatrist.  He is the doctor who monitors my lymphedema.  When I first went to see him when I developed lymphedema, I liked him a lot.  I liked how he took a whole body and whole mind approach to my care.  He’s the one who helped me start therapy when he could see my distress and depression.  He made it happen.  He talked about helping me get a healthier lifestyle to help with cancer prevention.  But the last few times I saw him, I felt like he had an unrealistic view of my life and how I can fit lymphedema care and a healthy lifestyle into my every day.

To my young or youngish survivor friends, I don’t know if this happens to you as well but I have found that throughout my cancer journey there has been a lack of understanding of what it’s like to have cancer and be a working mother.  I know that the majority of patients that are seen are in their 50s, 60s, 70s and older.  50s and 60s is not old in my mind but these women are often at a different point in their lives.  They don’t (usually) have very young children.  They are not (always) building their careers.  To raise a small child and still try to define myself professionally and creatively while having cancer and lymphedema has been my greatest challenge.  I succeed sometimes but feel that I fail a lot.  That’s because I have way too many priorities.  I’ve written about this before.  What do I prioritize?  My health?  My finances? My career?  My son?  My mental health?  My emotional health?  My relationships?  My free time to be me?  I’m often overwhelmed by these questions.

Nevertheless, because I have gained a considerable amount of weight in the last few months, I have chosen to put my health front and center.  I’m unhappy looking in the mirror and unhappy with the way I feel.  I wrote two blog posts ago that I’m having a lot of difficulty losing the weight despite exercising 4-6 times a week and eating a plant based diet (not vegetarian, not vegan just way more veggies and fruits).

The last time I saw the “never enough doctor,” I was told that I needed to exercise more.  I couldn’t figure out when to find the time, especially with the work schedule my  husband had at the time.  I was only weeks out from my DIEP Flap and feeling like hell physically and emotionally.  He told me to “call on my community” to help me get it done.  What he didn’t understand was that my community is also made up of working mothers who have very little (if any) free time.  This pissed me off.

With that being said, in recent months my husband and I have discussed the importance of my health and what sacrifices we could make to help get my health back on track.  This means that my husband is not running as much (he loves to run) so that I have time to work out.  He has also put on weight because he is not running as much as he did previously.  I am also rarely putting my son to bed at night.  When he was in preschool only 2 days a week and I spent more time with him, this wasn’t a big deal.  But now he is in summer camp 5 days a week and will be starting full day pre-k in the fall.  My time with him is getting less and less.  With having to exercise at night, I’m sacrificing some of that time.  But I’m doing it not so that I have more minutes with him but more years.

I’m also sacrificing some major sleep so I can go out, get my work done, do the dishes, pump my arm and wrap it at night.  It’s a lot!

I’m also now seeing a nutritionist.  She agreed that my eating habits are healthy and we are monitoring my progress.

I have to say, I think I’m doing a hell of a lot here.  But according to the “never enough” doctor, I’m…well…not doing enough.

“How long are you exercising,” he asked me?

“35-40 minutes, 4-6 times a week,” I said,

“What exercise are you doing?”

“I’m run/walking and when I can’t get out, I’m doing a kickboxing video.”

He stopped, turned to me, looked me in the eyes.  “You really need to do more.”

“More?  More than 4-6 times a week,” I asked?

“No, not more times a week.  You really need to do 60 minutes.”

What???!!!!????

“You need to do more land based activities. Are you exercising in the gym?”

“No, I run outside.  I go to the park.”

“You really need to join a gym so that you can monitor your heart rate.  It’s more disciplined that way.”

“But,” I said, “I’m having a hard enough time finding the time to do the exercise I’m doing.  Back and forth to a gym is 45-1 hour plus an hour of working out, not to mention waiting on line for a machine…we’re talking at least 2 hours 4-6 times a week!  When am I going to do that?”

“Well, you do what you want to do but, if you really want to lose weight, this is the way you are going to do it.”

Fucking Asshole!!!!!!!!!!!!!!!!!

So, I’m finally figuring out a way to get exercise into my life, which is what he asked me to do last time.  I’m pumping my arm every night.  I’m wrapping most nights.  “You’re not wrapping during the day as well?”  WTF!!!!!!??????!!!!!!!  But instead of trying to find ways to get more exercise into my life (a pedometer to watch my heart rate and this thing called youtube which, I’m sure, has a lot of videos on how to do more effective work outs at home or outside), he just said I need to do the thing I can’t feasibly find the time to do.

It’s not enough.  It’s never, ever, ever enough.

His message: You can’t have cancer and lymphedema and still have a life.

What I say: There has to be a balance.  I can’t do it all and I can’t live for my condition.  What kind of existence is that?

He said that he doesn’t need to see me anymore but I can come back if I ever need anything.  I don’t think I would go back anyway.  I need to surround myself with people who will help me live with lymphedema and the side effects of cancer treatment, not for it.

 

2 Year Cancerversary

It was two years ago that I walked into a breast surgeon’s office to have a lump in my right breast checked out.  I remember telling myself “It’s just a blocked milk duct.  You just finished breastfeeding.  They’re going to tell you it’s nothing.  You’re going to be fine.”  Your mind tells you one thing.  Your soul tells you the truth and prepares you for what is coming.  I remember the nurse or the resident or whoever she was looking at my sonogram.  Her face didn’t change.  It didn’t budge.  Her pupils did.  I remember them narrowing with knowledge.  “I’m sure it’s just a blocked duct,” she said.  “But I’m going to get the doctor.”

The doctor came in and looked for himself.  He wasn’t quite as adept at hiding what he was seeing.  He was all business.  After a quick look, he told me that he’d like to do 4 biopsies.  One for each lump he saw and two for my lymph nodes.  WHAT?????!!!!!!?????  My lymph nodes?  Why they hell would he want to check those?  The lump is in my breast!  There was so much I was about to learn.

I remember crying hysterically as he did those biopsies.  I couldn’t believe what was happening.  My life was changing and there I was, being punctured over and over again.  Once it was over he asked, “Do you have to be anywhere?  Can you stay for a mammogram?”  He called in a favor downstairs, asking if I could be seen right away, even though it was the end of the day.  He let me know that he’d have the results of some of my biopsies the next day, “just in time to ruin your weekend.”  He asked me to come back and to make sure someone was watching my son.  He then walked me down to get my mammogram.

The next day in his office, he said, “Well, it is cancer” as if we all knew it already and it was no big thing.  But it was a big thing.  It was a huge thing.  That day, my life changed forever.

That was two years ago but it feels like yesterday.  Time has gone so quickly yet so slowly.  It’s hard to explain.

At my one year cancerversary last year, I was still reeling from the trauma I had experiences both mentally and physically.  In my post commemorating the date, I chose to thank all of the people who helped me get through what was the worst year of my life.  I am still grateful to all of those people.

But this year is the year where I have tried to get back to living my life.  I have accomplished so much.  This year, I finished my weekly Herceptin treatments.  They didn’t really cause any side effects but they kept me going to the hospital every three weeks.  It’s hard to move on when you are constantly going to these appointments in the hospital but it kept me close to Nina, my chemo nurse who I always love to see.

Even though my lymphedema progressed into a non-reversible stage, I advocated for the kind of care I wanted.  I left NYU Rusk for physical therapy and found the amazing Cynthia Shechter at Shechtercare who is helping me learn to manage this condition.  It reminded me to trust my instincts and to never settle for sub-par quality of care.

I went back to work full time.  It was exhausting.  I still experience harsh fatigue and my body was still weak.  I also still have some lingering chemo brain.  It’s not horrible but I still forget to do things and can’t remember people’s names.  But I love my work and am glad that I can continue to do what I love to do.

I’ve tried to be a great mother to Oliver.  Many would say I accomplished that.  Being my own worst critic, I can think of a million things I did wrong or about all of the projects I didn’t get to do with him or all the places I wanted to take him, but there was never time.  But, he’s also so bright, funny and caring.  He did so well in his first year in school and grew so much.  I think I should take even just a little bit of credit for that.

This year has also been extremely challenging.  I had my DIEP Flap surgery.  I was warned that it was difficult to recover from but I didn’t quite believe it.  I should have listened.  I’ve never experienced that kind of pain before in my life.  I also underestimated how long it would take for me to recover.  Even though I went back to work after 6 weeks, I still feel like my body is healing.  I’m also still not used to the scars and dissatisfied with the results.  I know that it is a work in progress but, no matter what the plastic surgeon does, I will still be unhappy with the massive scarring on my body.  I just can’t get past it.

Emotionally, moving past cancer has been hard.  The good news is that I don’t cry every day anymore.  Up until about six months ago, I cried every day since my diagnosis.  That’s a lot of crying.  A lot of trauma.  I still think about cancer every day, several times a day but the thoughts and emotions are no longer paralyzing.

Cancer has made me feel stuck in life.  Right before I was diagnosed, I was starting to think about the next steps in my career.  I had to put that on hold, of course.  Now, I have no idea what I want.  I’m trying to work through all of this with a therapist but I’m having trouble moving on.  I’m still mourning and I’m trying to understand what this new normal is.

They say that each year, dealing with the aftermath of cancer gets easier and easier.  That one day, I won’t think about it all the time.  It will be a distant memory.  At two years post diagnosis, I don’t find this to be true.  I have my life and I’m so grateful to be able to do many of the things I love but I’m having trouble moving on.  It’s all still so raw.  I’m still so bitter an angry.  It doesn’t feel good.

I’m going to try to keep busy all day tomorrow.  Hopefully I won’t think too much about the significance of tomorrow’s date.  My hope for myself is that I find as much joy as possible.  Maybe I should do something nice for myself.  Get a mani/pedi or take a long walk and window shop.  I don’t know.  But what I do know is that I need to start turning this frown upside down.  I need more joy.  More life.  Or why did I fight so hard?