Flesh eating disease

So,  I was literally priding myself the other day for not having ANY side effects from the Tamoxifen. I thought I was stronger than the drug!  I have been having very dry and painful skin,  but I knew it was from our move to the new house and my body isn’t used to clorinated water.  That was, until I talked to my friend who is on a drug similiar to Tamoxifen.  She was complaining about her severely dry skin and blaming her cancer drug.  Hmmm......googled and yes - that is a major symptom.  I thought I had a flesh eating disease.  The skin on my thighs actually feels like it is splitting apart and on fire. The palms of my hands are peeling right off.  So is the skin on parts of my face.  Cool.  This is fun. So I am not unscathed by the Tamoxifen.    I have 3 months down and 117 more months to go on this drug.  I will probably look like a mummy by then.

A sadder turn of events is that another co-worker has breast cancer.  Unbelievable for such a small school.  Makes you wonder what the heck is going on.  I can’t get her off my mind.  It’s a long and difficult journey.  She was asking questions like how long I had my tubes in after the surgery and when I could drive again.  I didn’t have the answers.  I have completely blocked these things out of my mind.  I’ve blocked much of the past year.  I’m thankful that I kept this blog.  I took a little trip back and reread.  Wow.

Quiet mind - finally!

I have struggled over a year with my mind.  I cannot explain it any other way than to say it has felt the way I envision ADHD mixed with anxiety would feel like.  My brain was buzzing all the time.  For real - it felt like it was buzzing.  I had trouble remembering things, socializing, listening, planning, communicating, staying calm, understanding things.  Chemo definitely made it all a thousand times worse.  It has been only recently that I finally feel my brain calming down.  My thinking is more collected and not jumping all over the place.  I still have a few spots that are difficult for me.  The two big ones are 1) recalling words (super frustrating!) and 2) remembering people’s names (super embarassing!).  It even happens with people I see all the time.  I will be able to recall a first or last name, but not both.  I will also see someone that I know I should know, but I cannot place them!  But, for the most part, my mind has recovered.  And it is QUIET.  And it is such a relief.

I’ve been working on my brain - listening to audio books in the car and reading a little every night.  It is helping.

I’m starting to think a lot about my upcoming surgery in February.  I want to get put back together, but i just don’t want to go through the recovery again.  I still do not know exactly what I want done.  I have decisions to make.  I have my pre-op appointment in January.  I will iron things out at that appointment and hopefully get my expectations set.

But, for now.....it has been fun preparing for the holidays.  I did the bare minimum last year.  I don’t remember much of it.  It’s nice being back on track. :)

The Secret Suckiness of Life After Breast Cancer

I did not write the blog below, but I could have.  She talks about things that are happening to me, and it's sort of a relief to hear another person say them.  Going to bed early just to have a chance at functioning the next day.....not tolerating alcohol.....eyelashes and eyebrows that haven't grown back the way they used to be.....numb breast.......weird hair on my chin and cheeks......joint pain......irritability......the list goes on and on, but I am not alone.  I have read and reread this woman's blog entry!

Judith Basya's blog:

Now that I’m two years past chemo and have a full-ish head of hair, people no longer tilt their heads and make meaningful eye contact when they ask how I’m doing. They pose the question casually, as they would to anyone else, and we exchange the usual pleasantries. Then, maybe, they lower their voice or touch my arm and ask how I’m really doing.

How much truth can I slip in before they change the subject? Should I try to be funny? I usually go with the gratitude-but-challenges script they expect, then see if they’ll grant me the space to get real. “I’m happy to be alive, of course, but my current life compared to my old one sucks [note frown]. I mean, I’m still dealing with a lot of side effects [note eyes wandering] — but don’t worry, nothing I can’t solve by smiling a lot!”

Complaining is always awkward, but complaining about cancer gets you more side-eye than a priest at a pro-choice rally. People prefer to hear about drama they can help with, like decoding texts from a toxic ex. Scary diseases should be avoided in polite conversation, because, well, we’d all like to avoid them, but this goes doubly if you’re a cancer survivor: You’ve survived, after all.

Nevertheless, I persist.

“So, I take this one pill called tamoxifen to prevent another recurrence, and a dozen more pills to deal with the side effects of the tamoxifen, but now the sleeping pill isn’t working as well and I’ve tried all the other options, so…”

“Better tired than dead,” they’ll tell me. They’re right, and indeed I am grateful to still be here. Yet my life as it was, the one I envisioned and built and paid my dues for, is gone and not coming back. In my new life I have a fraction of my old energy, chronic nausea, no libido, uncontrollable irritability taking its toll on my husband and kids, osteoporosis limiting my outdoor activities, a beard on my face, and a brain so foggy... I forgot what I was going to say.

Oh, yeah: that I’m grieving. Grieving now, almost three years later, because I had to get through chemo and targeted therapy and multiple surgeries first, then I spent two years experimenting with how best to manage on this brutal drug, until I finally realized that any managing I did — of the meds as well as the scars and trauma of cancer itself — wasn’t going to bring me back to my old life. I’d just be managing this one for the duration. Which seems like the kind of thing you ought be able to vent about.

In my old life, I was a full-time writer. Now, even with medication to help me focus, I’m lucky to eek out an article a week. I’ve taken up photography to fill in the gaps, and my husband has a stable job keeping us afloat; so I’m not whining. But after years of calling myself a journalist, who am I now? With all these aches and pains and insomnia, can I reinvent myself before it’s time to retire? And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?

Because to survive breast cancer, the marketing gods will have us believe, is to thrive! Ever visit a breast-cancer website? More smiles than a dentist’s office. The women in colorful head wraps are smiling, their doctors are smiling, a young woman so beautiful she makes you want to go bald is smiling. And the survivors with their exciting new short haircuts, they grin, sun-washed faces like they've just returned from a wellness resort. There’s no fear of recurrence in their eyes, no hint of any long-term issues or complications. This airbrushed reality is held over the rest of us, setting us up to sound bitter or lazy if we aren’t 100% happy as soon as we’ve “beat” the disease (and what does that mean, exactly?).

For me, it can mean the world is no longer looking at me, with my asymmetrical cleavage and chin hair and refusal to pretend that post-cancer life is all pink and pretty. It means I lost friends who couldn’t take the heat, and I struggle to find time for the good ones because I absolutely must go to bed early, even just to toss and turn, if I want any hope of functioning the next day.

Since I found my first lump in 2010 (there were a total of three between then and my bilateral mastectomy in 2015), I have been lucky — a word I utterly hate in this context — to live near top-notch cancer hospitals and to nab appointments with pioneers in the field (calling moments after somebody else cancelled type of luck, hence my willingness to call it such). I’ve had no serious complications, no infections, no procedures that didn’t yield the expected results, no allergic reactions, no fertility concerns (I already had kids), and none of the potential side effects at which you can’t throw yet another drug. My point being that even with such a fortuitous run-in with it, breast cancer savages much more than breasts.

I bear multiple scars in every quadrant of my body. My brain is soup (except when a new ache or itch might be cancer again, then I’m lucid as hell). My liver protests the slightest sip of a cocktail. I can’t Rollerblade with my children because I fear shattering my bones if I fall. And this is just the wreckage from surgery and chemo. Hormone therapy, which according to the latest research I should endure for 10 years, piles on the insults: stiffening my joints, cramping my muscles, wrinkling my skin, making sex painful (if I’m even in the mood) (and by the way my fake boobs are numb), and growing hair on my cheeks and chin. Meanwhile, hair's still missing from my brows and lashes.

My biggest challenge, though, is staying sane under the pressure to keep all this a secret.. Without estrogen and progesterone, I’m a miserable, volatile beast. One anti-depressant — out of six that I’ve tried — takes the edge off, barely (and causes a tertiary set of problems, but I give up). I don’t recognize myself in the mirror, especially if I’m naked, but I don’t feel like myself anymore to begin with, so I guess that works. Or would work, if I lived in my own private universe. In the real world it takes a toll on everybody around me. My husband has lost the woman he married. My daughters are relearning how to get what they want from me, which sounds cute but is actually heartbreaking.

A few nights ago my car was broken into — no big deal, but I teared up when I realized my favorite sunglasses were gone: an oversized pair that I relied on through chemo to camouflage my bald eyes and forehead.

“Maybe it’s a sign that you’re done with cancer,” my teenager said, giving me a sweet hug. I didn’t contradict her. Sometimes, the hardest part of life after cancer is moments like this, when I wish I could keep the suckiness a secret from people I love.

Judith Basya

October 16, 2017

Dairy and Sugar and Carbs, OH MY!

I am still struggling from severe joint pain.  I have been going to the chiropractor and acupuncturist regularly.  No relief yet.  I have had so many doctors and friends tell me to look at my diet.  Cut out sugars.  Cut out dairy.  The problem is that everyone has something different to say.  I have no idea what to do.  I believe the theory is to get rid of foods that cause inflammation.  The only issue is that I do not have inflammation in my joints.  I just have unexplained pain.  And a lot of it.  I give up on the food thing.  I am just going to eat healthy most of the time.

In the meantime, I have started yoga.  I went to restorative yoga the first time.  That was basically an hour and 15 minutes of napping in 5 different positions.  It was nice, but I do not think that I will benefit from it.  The second time I went to a foundations yoga (non-heated, non flow).  That was good.  It was hard for me to move and get into and out of positions.  I hung with it and at the end when you lay there and relax and they say nice things to you, I just started crying.  What the hell is it with me and  yoga and crying?!!  I do think yoga shows me that my body can't do the simple things that I used to be able to do.  It is frustrating and sad.  I know I will eventually get back to being able to move better. I need to stick with the yoga and stretch and move.

Side note:  I once read an article that said that when you get to the point of not being able to get yourself off the ground with your own power, you'll be dead in three months.  Haha.  A bit drastic.  But I get the point.  I am not easily able to get myself off the ground. I hate that.

My friend's twin boys ran  and had my name on their tags for "This Run is Personal"!  I love this!!!!!  :) 

All decked out in a wig and false eyelashes for a night at Del Lago.  I felt pretty for the first time in forever!  :)

Dave

Oh boy, where do I even start on this post?  Back when I found the lump in my breast, I did what any smart woman would do.......I denied it and I gave it time to go away......yeah, no, that’s not what smart women do.  But that is what I did because I convinced myself that it was just a fibroid tumor.  A week after finding it, I mentioned it all to Dave.  I made him feel it.  I remember his exact words, “Just for fun, why don’t you get that checked out at the doctor’s?”  I called the next day.  From the minute that I got my diagnosis of breast cancer, Dave sprang into action.  He googled, and read, and talked to people, and developed a strategy for me.  All the while, I was a deer in headlights.  No, I was more of an ostrich with my head in the sand.  I was not ready to tackle this type of problem.  Our lives were too busy.  I had two 4 year olds.  I had just dropped my 18 year old off at his first year of college.  The holidays were coming.  Thank God for Dave.  He took control and made phone call after phone call to schedule consultations with doctors and second opinions and third opinions and fourth, fifth, and sixth opinions.  And just to make sure, he called and scheduled us to spend an entire day at Cleveland Clinic seeing six more doctors!  During all of these appointments, my brain was in complete shutdown.  I was not processing all that I was hearing.  It was too much to take in.  It was scary as hell.  Dave listened and asked the questions and remembered everything.  He UNDERSTOOD everything.  To this day, I can not tell you what kind of cancer I have, but I know Dave can.  We would go to these doctor appointments, pay the fees, listen, and then go out to breakfast or lunch together to talk.  I remember the first conversations when he told me that it didn’t matter to him if I even had breasts.  But, it mattered to me.  I’m not going to lie, I was angry.  I was angry about going to all these second opinions.  I just wanted this over and this was dragging it out.  I took my anger out on him.  The next thing he did was hook me up with a counselor and drove me to the appointments and waited for me.  I didn’t want to see a counselor, but he knew I needed to.   He struggled to juggle his job along with my physical and mental health.  Then, finally, came my surgery.  I honestly cannot remember how long my surgery was - maybe 8 hours?  He was there the whole time and even updated my blog for me. Then I spent 4 days in the hospital, in misery.  And every minute of it, he was there.   Every time I woke up.  He slept in a chair next to my hospital bed every night. He checked in on the kids, the house, our cat.  When I was released to go home, he learned how to measure and empty my four drains - when I could not physically or emotionally deal with them.  A disgusting job.  He got my medications in order and kept me on a schedule for everything.  I was still an unhappy camper.  I was still angry about everything to do with my situation.  I could not see the forest for the trees at that point.  He stopped traveling for the 6 (or was it 8?) weeks that I was home.  He took me to all my appointments.  Then came chemo.  Boy, if I thought I was angry and unhappy before......that was nothing compared to the six months of chemo days.  I took out all my frustrations on him.  And he never backed down.  Not even when I was at my lowest points.  When I was ugly inside and out.  He was there.  Quietly there.  Always. He rubbed my feet.  He loved and took care of me when I wasn’t a bit lovable or a bit thankful for his help.  And when I was too sick to eat or stand or care....when I couldn’t sleep through the night.......when I was in pain......he was there. I  wouldn’t have made it without him.

A year

A year ago my brother and I had spent the summer fixing up my ancient hip-roof barn in anticipation of having a huge halloween dance party. We strung the entire barn with lights, built a bar, a food station, a fire place, and a dance floor. I found the lumps in my breast early that October.  I gave them a couple of weeks to go away on their own and then I went in for all the tests and biopsies.  I had the biopsy done on a Friday and we had that party on a Saturday.  My breast was still bleeding from the biopsies and I was terrified that the results would come back cancerous on Monday, but we had that party and it was awesome!  Fast forward to this October.  Even though we moved, our old house hadn’t sold, so we went back for one more halloween barn party.  If I could have seen one year into the future last year - that I wouldn’t have hair, my body disfigured, and that I had a port in my chest - it would have been the worst thing I could ever think of. But, looking BACK at the year with these things is a different perspective - and I have come so far and been through so much.  And we had this halloween barn party again.....one year later......and it was awesome!! :)

Dave and me last year

Will & James & me

My barn! <3

Josh & me this year

So, today was mammogram day.  I have been dreading this. When I got there, my hands were actually trembling.  I was bracing myself for bad news, even though I really have no reason to.  But in all fairness, it is crazy that I had so many unexplained tumors in my breast last year.  So, I stressed.  As I was signing in at the front desk, I heard someone call my name behind me.  It was my friend who I mentioned in a previous post!  We were actually scheduled for our post cancer diagnostic mammograms on the same day and same time!!!!!!!!!  I was never so happy to see a friendly face!  The mammogram was scheduled first.  I did not want to have that much pressure placed on my reconstructed breast!!  She assured me that it would be fine.  So, I had the images taken on both breasts.  Since there is absolutely no feeling or sensation in my left breast, there was no discomfort with the mammogram on that side.  I just closed my eyes tight.  On my right side, my chemo port is in the breast tissue, so it has to be mammogrammed, as well. UGH!  Again, I closed my eyes and held my breath.  It was over in no time.  She sent the images to the doctor and sent me back to the waiting room in my purple gown.  My friend was there and we probably chatted away a whole hour together……..so thankful for that distraction while we both awaited our results. It's so funny that I wanted someone with me that day and I got my wish!!! :)  I finally got called back to meet with the doctor.  She did a manual exam and then an ultrasound of both breasts and lymph nodes.  Everything looked GREAT!  I got a clean bill of health!  She does recommend that I have an MRI just to be sure.  I will call about that tomorrow.  My friend got good news too! :)

Sweet Elizabeth Wende purple gowns

Spontaneous therapy session

I have a friend who also found out she had breast cancer - literally within days of me finding out about my own.  Her journey took her through a lumpectomy and radiation. We have compared stories and shared any gems of wisdom we have found along the way.  I had a chance to connect up with her today.  We are both due for our mammograms again.  And once again, we will be going for them only a week apart.  We are both terrified, to put it mildly.  Neither of us can face another year like we’ve just come through.  She had an appointment with her oncologist and she said her blood pressure was sky high and she was nearly in tears just being there.  She compared it to having PTSD.  I would have to agree. My heart rate is always above the healthy level when I’m at any of my appointments dealing with my cancer.  There is always this underlying thought that the rug is going to get pulled out from under me again.  It is nice to be able to commiserate with someone who is having all the same feelings as me.  As the holidays approach, I cannot remember much of anything about them last year.  It’s like I blacked out of a year of my life.  I look at pictures that I don’t remember taking.  I cannot remember the family parties.  I cannot remember the gifts that I gave or received.  It is shocking to me that along with suppressing all my fears about my upcoming mastectomy that I also supressed all my memories from that time period!  The brain is amazing.  We also talked about putting on a smiling and brave face for our families, friends, and workplace. When you do that without taking time to be honest with yourself, it is exhausting.  I became a fake shell of a person.  That is the only way I can describe it.  It is only now that I am desperately trying to claw my way back to the person that I was before.  It’s going to be a long road and I foresee the surgery in February setting me back a little.   Right now, I’m just consumed with distracting myself until I get news of a clean mammogram.....