Back in the hair game

My MRI results came in the mail last weekend.  I made Dave open it up.  It was fine!  I actually still haven’t even looked at it.

A lot of my joint pain has been considerably reduced.  Is it because of the acupuncture?  Is is because my body finally got rid of all the chemo toxins?  I will never know.

I can tell my body is still healing.  I am very exhausted by 7pm each night.  I still crawl into bed every night -after my 20 minutes of yoga- around 8:00.  Most of my residual joint pain happens by this time of the day and throughout the night.  And it’s mostly just in my hands and feet now.

On Wednesday evening I got my first hair cut and color.  My hair stylist gave me a free hair cut.  I didn’t have a lot to work with, but he worked his magic.  I anticipated getting the hair cut and continuing to wear my head scarves.  I forced myself to post a picture of my hair on Facebook.  Of course, everyone had lots of nice and supportive things to say about it.  I used all that support to gain the courage to go to school the next day without a scarf.  I felt completely naked.  I have been wearing a wig or scarf on my head for the past 11 months.  The scarves have become my security blanket.  They hide the ugly results of chemo.    I had a colleague who would joke about me playing the “cancer card”, but the scarves were something different.  I was never looking for an excuse or pity.  The scarves were evidence of what I had been through.  What I was still working through.  They were a symbol for people to be lenient and gentle with me.  That I was not the whole person that I used to be or that I wanted to be.

So, my hair is ridiculously short.  I do hate it. I want my old hair back, but I have a long wait ahead of me.  Until then, this is going to be my new normal.  I am on the other side of cancer now.  Crawling slowly back to the way things used to be.  There is still so much patience needed.  I’ve come a long way, baby!  A year ago, I had just had the mastectomy and was on a million drugs, with drainage tubes coming out of my body, and having to sit up in a chair all night long.  Not a great memory.  But it is finally in the rear-view mirror.

MRI and pre-op appointment

I had my breast MRI on Monday.  This is just routine and “just to make sure” there are no tumors in my other breast.  I’m not quite sure what I would do if tumors show up.  The results will be in the mail in a couple of days.  Patience.....

Today was my pre-operation appointment with plastic surgeon, Dr. Vega.  I had to sign the surgery papers that tell you all the things that can go wrong.  Always fun.  Then, I had to strip down for my photo-shoot.  Also always fun.  (Eye roll).   The surgery is still scheduled for February 13th.  It should take about 2 hours to do everything (remove port, create a nipple, lipo and fix my disaster of a stomach from the DIEP flap incision, and fat graft my (hopefully non-tumor filled) natural breast.  She didn’t say how long I would be laid up, but the doctor had mentioned a week.  She says I will be really sore where they lipo to get fat for the fat graft.  She says that I will know if the fat graft was successful after three months because the body can sometimes absorb some of the fat.  If that’s the case, I would have to go in for another surgery to do more.  Question:  Why can’t my body absorb the Christmas fat I put on????  The final step for this reconstruction is tattooing on an areola.  They have a tattoo artist right in Vega’s office.  It takes about an hour.

On the immediate horizon:  A cut and color with my hair stylist next week!!  I’m excited.  I don’t have a lot of hair, but it’s time to have it trimmed up and get the gray out!

Joint update:  I’m still doing acupuncture every week.  I am in much less pain with my joints.  The doc gave me a moxa stick to do moxibustion at home for the pain.  It’s some ancient Chinese way of  giving the painful joints intense heat.  It really does take away my pain.  I don’t quite understand it.

And if you’re following the Bergen house saga:  Most of the downstairs carpets, ceilings, and some walls had to be gutted.  A company came in and dried the house and applied a mold barrier.  The oil company is taking responsibility for not delivering oil.  The buyers are sticking with it and besides getting a great deal on the house, are now going to get a brand new first floor!  If all goes well, we will let them choose their preferred carpet and paint colors.  The whole thing is unbelievable.  And then I will have to deal with the actual sadness of actually selling that house.

Routine oncology visit & other stresses

Let me just give you a little background on my afternoon to explain why my blood pressure was so high for this visit!  I was trying to scramble out of school early.  In the middle of finishing up a bunch of school things, I noticed 2 messages on my phone:  one from our realtor and one from the Genesee County Police Department.  I called the police back first.  He informed me that our house (that is ALMOST sold) was reported by the realtor for having major water damage.  I immediately called the realtor back.  Meanwhile, I SHOULD have been putting my lidocaine cream on my port......but I figured I would have the blood draw by my arm and I could numb my port by the time I needed to have it flushed.  All of this while racing toward my appointment. I got to the blood lab and they told me that oncology was going to do my blood draw right NOW and to head upstairs.  OMG, I still hadn’t put my cream on!!

So, yes, I had a pretty high blood pressure.  The nurse asked why.  I recited all of the above.  I had asked my dad to run over to the house and check out the damage.   He said there was a LOT of water damage to the hardwood floors, walls, and carpets, along with flooding in the basement.  There were 3 obvious breaks in the heating pipes.  He also noticed that the oil tank was on empty.  I had my blood drawn (OUCH, nope the lidocaine hadn’t had time to work!) and my port flushed while I was frantically calling the oil company.  I confirmed that the house was still on automatic fill up.  So, this is a direct result of the oil company not keeping the tank filled!  OMG.  We are looking at well over 10k in damage.  Most likely, much more.

Back to the cancer story.  All of my numbers look great (except my blood pressure!).  This was my last port flush because if all goes according to plan, the port will come out during my surgery in February.  I cannot wait!

So, apparently, there is another fun side effect of Tamoxifen.  That is weight gain.  I am up 5 lbs in the last 6 weeks.  The doctor said that people usually gain 5 lbs on Tamoxifen because it puts you into menopause.  Menopause is when your hormones are all confused and seek lots and lots of Christmas cookies and cheese.  Great.  She said that I can blame this 5 lbs on the drug, but anything more will be  directly from eating too much crap!  She doesn’t sugar-coat things.  And it’s a good thing, or I probably would have eaten that too. :/

Next appointment is a pre-op with my plastic surgeon on Wednesday.

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!  :)