Tit for Tat

Or rather, tat for tit.  :D

I had my areola tattooed on today.  I was a little nervous, but in the grand scheme of things, I figured this was going to be small.  It was.  The tattoo artist had me fill out a million forms while she matched my color.  She asked if I had any feeling on my breast and I told her that I didn’t, so I wasn’t worried about it hurting.  She said that most women say that, but they usually can feel something.  I didn’t.  Not a thing.  So, because it was so painfree and cool, it was probably my gateway tattoo and soon I’ll be all tatted up!!  But seriously,   I would like to get a small tattoo on my wrist or over my port scar that says “survivor” with a small pink ribbon.  Just a small reminder.  We’ll see.

Anyway, if I thought having my nipple reconstructed raised my self-esteem.  This tattoo raised it up even more.  It really looks amazing!  I’m still hacked up all over with scars, but she says they will fade.

My hair is continuing to grow.  I have serious  “chemo curls”.  My normal hair is wavy.  I’m assuming this will eventually go back to that.  But, for now, it looks like it is the 1980’s and I got a perm.  People have actually asked me if I got a perm.  I’m getting more and more comfortable with my hair, but I am absolutely planning on growing it all the way out again.  I can’t wait.

As far as my cancer, I still see the oncologist every 3 months.  Eventually that will increase to 6 months and then a year.  And this will all be in my past.

My chemo brain is pretty much repaired.  My ability to process things quickly has returned.  I’m happy to be in social situations.  My eyebrows are getting microbladed in a month because they only grew halfway in.  My sense of smell is still not up to par.  This effects my sense of taste as well.  However, I am getting used to it.  The numbness in my left arm and breast will remain for life.  The 20 pounds that I gained throughout this whole process is being stubborn, but I’m working on it.  My joint pain comes and goes.  That is still a mystery.

I think this is where I’m going to end this story.  Sometimes I look back at all my blog posts.  It is overwhelming to read.  I am still too close to the pain.  I pray this is the last time cancer enters my life.

Epilogue:  I lived happily ever after.

Coming back to life....

First of all, let me just say that having the nipple reconstruction has seriously improved my self-image.  It has been a long time since I was able to look at myself in the mirror without clothes.  I did not expect this last reconstruction to have such a positive impact on me.  Yes, my body still looks completely butchered......so many ugly scars......but I am feeling better about myself.

It’s weird, but during the time that I got my diagnosis and throughout the surgeries and chemo, I became very tunnel visioned.  My horizon got so small.  I blocked a lot out.  I am missing huge portions of my memory of things from my chemo months.  Now I realize it was due to being tunnel-visioned.  We bought this new house and moved during that time.  I am just starting to actually LOOK around and take in this new space.  I realize how crazy this sounds.  I actually stopped taking in information, socialization, and memories for about a year.  I had stopped living and burrowed down deep inside myself while I healed.  I have so much excitement for this summer - to LIVE and do things with the boys!

Currently, I am trying to get my activity level back to normal.  I have been doing yoga and trying to stretch my body and mind.  It is getting a bit easier for me to just get up off the ground.  I haven’t been able to do that for a while now!  It’s amazing how your body shuts down in such a short amount of time.  I have also started doing a “Couch to 5K” program.  It’s a program that will help me work cardio back into my life until I am ready to run/walk a 5K.  I have my sights set on the Mother’s Day Breast Cancer run/walk that I did last year.  I’m in a completely different place now!!  And that was such a moral booster last year!

On the horizon:  In May, I get my areola tattooed onto my “new” nipple.  In June, I get my eyebrows microbladed (tattooed).  They never grew all the way back.

Post-op appointment

Whew, I am one sore puppy!!  I finally took a shower today.  I didn’t take any of my bandages off.  I just couldn’t do it.  I look like a monster - swollen and bruised and bandaged.  Oh course, when I went in, the nurse practitioner says, “Wow, you look great!”  I would hate to see what they think doesn’t look great.

Here’s some weirdness. My “new” nipple was created by cutting my remaining nipple in half and sewing it onto my reconstructed breast.  It will turn black (it has already) and slough off -ewwwwww- and I will be left with a new, pink nipple.  Crazy.

All the areas that they did the liposuction and fat grafting are bruised and painful.  She says I will be in decent pain for a good month.  I stopped taking the oxycodone because it was making me sick.    I’m not allowed to exercise and sweat for a full month.  I am honestly kind of bummed about that.  But, I have pain just standing up straight.....so I don’t think doing a cobra pose would feel very good.

The spot where my port came out hurts and got really red last night. Dave called the after hours doctor.  They had me take a photo of it and send it to them.  They think it’s just irritated.  She poked around it a lot today and decided that I will live and to just keep on the antibiotics.

I have to remove my bandages on Monday.  Nobody mentioned not working, so I didn’t ask.  I’m going back on Thursday.  I’m sure it will be fine.

Next up:  Another visit with the plastic surgeon in 3 weeks for another check.  Then, I will schedule my appointment to tattoo an areola.  :)

Surgery done!

Amazingly, I survived yesterday without FOOD!!  My surgery ended up being delayed 1.5 hours and I finally went in at 3:30pm.  Surgery lasted almost 2 hours (but mere minutes for me!!!).  I had lots done:  port removed, nipple and reduction on left breast, augmented right breast with fat grafting, and cosmetic repair of my stomach/sides from the DIEP flat procedure that I had done during the mastectomy.  I was basically dressed and pushed out the door before I was even 100% conscious.  Thankful for Dave getting me home, in bed, and a nice slice of peanut butter toast! :)

I haven’t looked at my body yet.  I probably won’t look at it for 48 hours, when I can take a shower again.  I think I will need to set my expectations low, even though the doc told Dave that I will pleased with the results.

I definitely have a lot more pain than I did for the mastectomy - but I had internal and external pain relief for that procedure.  Right now, Codeine is my best friend.  Feeling SORE is an understatement.  Stupidly, I YouTubed liposuction and fat grafting just now.  Eeeek!

Nobody has told me how long I will need to stay out of work, but Google says 7-10 days.  It says I will be sore for the next couple of weeks.  I plan on going back in 8 days, with or without soreness!!

Next steps:  post-op appointment with the plastic surgeon this Friday - and then tattoo an areola on the left side.

Surgery day

  I had my pre-surgery screening on Friday.  I’m having a laundry list of things done, and they only had a few of them on the list.  Eyeroll.  They felt a little sketchy about that and made a phone call to Dr. Vega’s office.  The woman who was supposed to add the extra surgery items wasn’t there so they left her a post-it note.  Seems legit.

I called yesterday to find out what time my surgery starts.  It starts at 2pm!!!!  OMG, I could have worked a half day!  Sigh.  I have to report to Highland at 12:30.  I’m STARVING.  I’m not allowed to eat anything after midnight last night.  So, I am sitting here watching the food network and pinning recipes on Pinterest.  And my stomach is growling.

I’m a bit gun-shy on this surgery.  I was just beginning to feel okay from this past year.  Yoga has been helping so much.  I still struggle to get off the floor if I sit down with the kids.  It’s shocking.  So, I’m very nervous about regressing on that.

The surgery is supposed to take 2 hours.  I will be coming home the same day.  Got our favorite babysitter all set for picking up the boys and helping with dinner and bedtime tonight.

Heading to the hospital in another hour.  Looking forward to DINNER!!  :D

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!  :)

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.....

Acupuncture

I had my appointment with Pivot Acupuncture today.  They are a husband/wife who do acupuncture, acupressure, and physical therapy.  They have offices in Bergen and the city.  I went to them after the twin pregnancy because I had joint pain in my hands and feet back them.  I stuck with it for a year and it helped a ton.

So, I reconnected today.  The first thing an acupuncturist does is looks at your tongue and takes your pulse.  They can tell a lot by your tongue.  She told me that my "chi" is depleted.  Chi is your life energy flow, if you are into that sort of thing.  Since our health insurance covers acupuncture 100% I will assume it has been proven to work.  Also, if you believe in something, I do think it works for you.  I asked what would deplete my chi.  Duh, it's chemo!  Chinese herbs can increase it.  Acupuncure opens up your chi canals throughout your body, letting your life energy flow more freely.  This can cure or prevent illness.  I had the needles placed, which by the way, doesn't hurt at all when they pierce your skin.  What does hurt is that they kind of twist the needles in further until it hits your chi canal.  For me, when it hits this spot, it feels like a jolt of electricity!  Quite unpleasant.  The needles stay in and you get to lie in a quiet, dark room with meditation music playing.  Usually there is a heat lamp on you to keep you comfortable....but I generally don't want it because I'm typically warm.  I am going to go back 4 weeks in a row and see what progress it brings.  Then, you generally go on a maintenance schedule.

She asked me about my diet.  She mentioned eliminating sugar and fast burning carbs.  I pretended I didn't hear that.  ;)

Sorry if the "chi" stuff makes me sound like a fruit loop.  I'm willing to do anything to get out of this pain.  I'd like to do it without drugs and side effects......I've had enough side effects lately to last a lifetime. I'll go back to crunching on my granola now.  :D

Yoga breathing and yoga crying

I paid $30 to attend a cancer survivorship talk, yoga, and meditation at Breathe Yoga tonight.  In my head, the room would be full of people like me, in headscarves - wanting to use Yoga to reclaim their health.  In reality, there was only one other person with a headscarf out of a room of 30+ people.  The yoga room was at least a million degrees and my hot flashes and I almost bailed upon hitting that wall of heat......but we pressed on.  Dr. Karen M. Mustian spoke for almost an hour.  She has done studies, published in the Journal of Clinical Oncology that show proof that yoga helps cancer patients.  Her studies used people who had gone through cancer surgery, chemo, and/or radiation and were done with treatment (except for oral chemo like Tamoxifen).  The three symptoms she was looking to reduce were:  exhaustion, chemo brain (specifically ability to focus and remember), and all over muscle/joint pain.  ME!!!  There were thousands of people in the study, with a group receiving a placebo - which in this case was an oncologist prescribing meds, etc. to try to solve those very same issues.  ME!!!  In the study, the people receiving yoga had to go thtough a specific yoga sequence (breathing, poses, mindfulness) two times a week for 4 weeks.  The time period was kept short because she felt that if people weren't getting relief from these symptoms in that amount of time, they would go to their doctor for medication.  The study worked.  All three of those types of symptoms were reduced or gone with yoga!

After her talk, we were lead through restorative yoga and meditation.  It is sad how difficult it has become for me to move my body.  So much pain. For the first time in forever, I focused on my body, my breathing, and the teacher talking to us.  Nothing else was in my brain.  And I cried silently through the whole thing.  I could feel the tears streaking down my face and neck. I don't even know what I was crying about - the best I can think is that I finally felt understood.  She spoke of women with breast cancer all just living life and feeling great - and bam - you find out you have cancer.  Then, you have disfiguring surgery and chemo or radiation that makes you sick.  Your body gets put through a lot of stress and works against you.  It is a hard place to climb out of.  I listened and I cried.   Thankfully they had the lighting very low!  I left feeling taller and lighter.

I need to fit yoga into my life.  And massage, acupuncture (got an appointment next wednesday!), meditation, mindfulness, and chiropractic care.  Don't worry, I'm not going to run off by myself, traveling the world, writing "Eat, Pray, Love Part II".  But, I'm starting to feel like I could!! :D

Surgery scheduled for February

First, let me back up to yesterday.  My pain in my joints (especially feet, hands, knees) has become almost unbearable.  I am now in pain throughout the day and even when I am not on my feet.  It still gets super severe in the evenings, lasting well into the morning.  For my birthday, Dave got me a 60 minute foot massage. I was super excited.  But, this was a very painful massage!  I have had therapeutic massages before and ouch!  However, I was pain-free for about 3 hours afterwards!!!  So, my thinking is that I should go for a foot massage every three hours for the rest of my life! :) I am, in all seriousness, going to try to do this regularly for a bit.  Massage combined with meditation, acupuncture, chiropractic, and hopefully yoga - that is my recipe for getting my life back.  There is a cancer survivor yoga and meditation class at Breathe Yoga on Wednesday, and I am going.  I hope that I can try to work in the yoga/meditation classes more regularly after that.  I also have some leads on acupuncturists....just have to find the time to call and go in!

I completely ditched the Gabapentin drugs.  They didn't help at all.  Tamoxifen has been fine so far.

Today, I visited Dr. Vega for a consult on my next surgery, which is cosmetic.  He is going to do a laundry list of stuff:  remove my chemo port, fat graft from my abdomen to my right breast to make it the same size as the reconstructed breast, liposuction my stomach/sides to smooth things out, and give me a nipple on the left side.  I scheduled it for February 13th.  I have to be back to my pre-chemo weight prior to surgery.  I insisted that I was only 5-6 lbs away from that - when in reality I may be 8-9 lbs away.  Shhhh.  I have to decide how I want the nipple done.  He can do "nipple sharing", which is cutting the end off the one remaining nipple and using it for the left side.  He can't promise that I won't lose sensation, but he says it will be the best "look".  I have to google that some more.  It kind of freaks me out.  Ok, it really freaks me out.   I will go back to his office in January for a pre-surgery appointment and confirmation on the February 13th surgery date.

Pain level 8 (and I'm conservative!)

I saw the oncologist yesterday.  They hoped my joint pain would have resolved itself by now.  It hasn't, and I would venture to say it is worse.  It sounds like I am being dramatic saying I cannot walk, grasp things, and get up from sitting - but that is the truth. I am slowly becoming crippled.  I am still functioning during the day, but I would say my pain level is a 3-4 all day long.  By 4pm, I start the decline until I am in full pain by 8pm.  The oncologist says that joint pain is common during the Taxol chemo, but it only happens during the treatment - not after it is finished. They cannot explain it.  The only other thing they can think of is to send me to a neurologist for a nerve conduction test.  I don't know what that entails, but it doesn't sound like I would like it!  They need me to start the Tamoxofen - like NOW - so we can't really drag this out to resolve this pain right now.  They offered me a drug (Gabapentin) that might help my pain IF it is nerve-related.  I am 99% sure this is not nerve related pain. The drug also works to reduce hot flashes.  My hot flashes have gotten so bad that my glasses actually fog up!  Soon, someone will find a pile of my ashes with my shoes - because I will have spontaneously combusted! Anyway, back to this drug - it used to be a seizure medication, but doesn't work good for that....but they determined that it does help nerve pain and hot flashes.  She cautioned that it will make me very sleepy and it will also lower my blood pressure - so when I am laying down, I have to sit up slowly so I don't pass out.  Sounds like an evil drug, but I am in so much pain, I am willing to try it.

That was, until I saw my chiropractor today.  I ran it by her and she said "If it is Gabapentin, I would NOT take that.  At least do some research before you do.  It is addictive, messes with your head, and can cause anxiety."  EEEeek!  She recommends that I continue to resolve my pain holistically - I am thinking chiro, acupuncture, diet, stretching, sleeping - and use medicinal marijuana for the pain.  It is natural and has no side effects.  So, I am back to looking into that.  Is is covered?  How does it work?  Does my doctor have her license to prescribe it?

Oh, one more thing about the oncologist.  I always have to tell them if I have any rashes or unusual symtoms.  I started feeling a ton of tiny bumps all over my arms.  It feels like a rash, but they aren't red or itchy.  I made her feel them.  She humored me, but said it was just my hair follicles starting to produce arm hairs again. Ha!  My eyelashes have all sprouted.  My eyebrows have started growing in, but just mostly just the inside parts, so it looks like I have a surprised expression all the time!  My hair is about 1 cm long all over.  Slow and steady....

I'm laying in bed now.  I just took a Gabapentin pill.  I might as well see if it does anything.  I'll give it a week.  I'm nervous - but I'm also desperate.

Fight or Flight

I went to the chiropractor today.  It's been a full year since I've been there.....'cause I've kinda been busy this past year.  I want to do everything I can to try to get rid of this joint pain.  I am also in the process of finding an accupuncuturist who has weekend hours.

My chiropractor, Dr. Amy, had some really good insights for me.  She talked about my sympathetic and parasympathetic systems.  Your sympathetic system is your "fight or flight" response system.  She says that with my surgery and chemo, it put my body into fight or flight.  Your body should only be in the this response for seconds at a time.....in emergencies.  Chemo attacks your body so severely that it puts you in it for unhealthy amounts of time.  When your body is in fight or flight - it goes into emergency mode and doesn't do the normal things well, such as digest your food, sleep, think, etc.  I had been pushing through chemo, trying to keep a smile on my face and trying to continue with life as is.  I didn't want to use the "cancer card" or "chemo card" and bail on things.   Turns out that it is impossible.  I have been struggling with the last chemo session pretty badly since May/June.  In the middle of that struggle, I was finishing up the school year, packing the house, and moving.  I was making a lot of mistakes with my thinking.  I was quick to react to things, without thinking.  My responses to things were highly impulsive.  I was argumentive and defensive. After today's visit and conversation, this is all making sense.  Even now, I struggle deeply in social situations.  There is definitely a bit (a lot) of insecurity because of my looks right now. But, beyond that, I get super anxious in social situations with groups of people. I have a harder time following the conversations and the joking.  I constantly feel like I'm missing something.  I blurt things out impulsively, because I feel I don't have time to think (and screen) things. It's an overwhelming feeling.  I was trying to explain it to a friend recently and I couldn't express it correctly.  Now, thinking in terms of fight or flight - it all makes sense.  It also makes sense that my heart rate has been going off the charts for the last 3 months.

I got a nice adjustment today, but more importantly, I got some much-needed advice on how to gain my SELF back.  She recommends 1) sleep - good and long sleep (like 8-11 hours a night) to help repair my damage. 2) Meditation - I am going to start some "yoga nigra" tonight and try to incorporate some mindful breathing into my day.  3) Joyful movement - not exercise (cardio is fight or flight), but moving my body with things that make me happy, like taking walks, etc.  She recommended the book "Goddesses Never Age" by Christian Northrop, MD.  I'm getting it at the library this weekend.   I will also go back for adjustments every week or two for a bit.

I finally feel like I have a good start on my path to wellness.