Terri Got Her Groove Back

photo 3

Spring is officially here (well at least in Ohio it is).  My surgery is done.  I have no more treatments scheduled or drugs to take.  I’m feeling good.  Ready to leap forward & embrace life.  Got myself a new pixie haircut and am starting to feel like I’m getting my groove back again.  Hallelujah!

Saw my oncologist Dr. K this week.  He agreed that my NY surgical team did a great job on my breasts.  Said everything else looked fine.  We did some blood work that my naturopath requested to monitor the nattokinase i’m taking (in lieu of the coumadin to prevent more blood clots).  Still don’t have the results on that yet but i’m assuming all is good.  I’m not feeling any of the blood clot signs…  No pain or swelling in my legs.  No shortness of breath.  No headaches.  Knock on wood…

Dr. K asked if I had gotten my period again and I was thrilled to tell him “Yes!” (I’ve only had 3 visits from ‘aunt flo’ since i was diagnosed in November 2011).  To me, getting my period again is a signal that my body is finally starting to re-balance itself.  Detoxing the chemo and other meds.  Getting back to normal.

But of course in the estrogen positive breast cancer world getting your period is something you don’t want.  And Dr. K said as much, encouraging me to consider options like surgery & more meds to permanently put my ovaries out of commission and end my periods once & for all.  I nodded politely, murmured a few “I knows” under my breath, but thought secretly in my head, “No way!”

No way am I going back to menopause land at age 38!  No way am I going back to a world where sex is painful and devoid of pleasure!  No way am I giving up this recent upsurge in my sex drive that actually has me wanting sex with my husband for the first time in almost 2 years!  No way am I going back to hot-flashes, brain fog, night sweats, and sleep problems!  Screw that!  Nobody talks about the sexual side effects of cancer.  But we so need to.

Luckily Dr. K is open to the work I’m doing with my naturopath to naturally lower and re-balance my estrogen levels.  Although western medicine takes the approach that estrogen is bad and we need to remove it all from the body to prevent cancer from happening, the reality is much more complex.  In fact, there are 3 different types of estrogen in our bodies (Estrone, Estradiol, and Estriol).  The first two are more aggressive and associated with increased breast cancer risk when tested at high levels.  But the final type is very healthy and has anti-cancer properties.  So the goal is to lower the first two & boost the healthy one.  This can be done with diet (cruciferous vegetables, fiber, flax, fermented soy products), supplements (calcium d-glucarate, indole-3 carbinol, DIM), and avoiding unhealthy xeno-hormones which damage cells & lead to mutations & cancerous tumors (ie. pesticides, herbicides, & other chemicals in our food, household & beauty products).   Estrogen is produced primarily in the ovaries but also in the adrenals and fat cells.  And those nasty xeno-hormones love fat cells!  So it’s really important to keep body fat to a minimum (one of the main reasons I’m looking to lose another 10 lbs).

The full story on hormones is of course way more complex than this.  Which is probably why most conventional doctors don’t address the issue in a more in depth manner.  It’s a lot of information.   Instead most offer the standard response: take Tamoxifen and suppress activity in your ovaries (either through surgery or more meds).  Period.

The last time I had my estrogen levels checked (through urine & saliva tests ordered by my naturopath) was almost 6 months ago.  At the time my Estradiol and Estrone levels were both at the very lowest end of the normal range (2.9 pg/mL and <0.3 pg/mL respectively) .  And my 2:16 hydroxyestrogen level was strong at 8.9 (ratios less than 2.0 indicate increased long-term risk for estrogen sensitive cancers).

So as long as my estrogen levels remain at healthy levels and my body continues to have no evidence of disease I will continue to say no to “preventative” surgery and medication.  And I’ll keep taking action the natural way instead.

Besides, I am loving the fact that I’ve got my groove back again after going for such a long time wondering if it would ever return (and I think hubby is loving it too 😉

Life is pretty good these days…  Having my dad here has been great for both me and Miss M.  She follows grandpa around all day.  Can’t wait to wake him up in the morning.  Requests that he be the one to read her bedtime stories.  Sits as close as possible to him at the dinner table, in the car, and everywhere else.  The two of them are a great pair…  Chatting away with each other.  Listening to each other’s goofy theories and stories.  And just being silly.  It’s adorable.  And it’s giving me a much needed break to write, rest, and have a few moments to myself.

On Monday the party gets even better with the arrival of our beloved Auntie ‘Cole who’s coming for a week-long visit.  Hooray!  Miss M is overjoyed to have one of her favorite “aunties” coming to town (as am I to have my best friend around for some good ol’ girlfriend bonding time).

So far, the recovery from this surgery has been a hell of a lot easier than the last one (for everyone involved).  And I am determined to make this surgery my last.  Although I am not in denial about the realities of metastatic disease, I am confident that I can beat the odds.  That I will continue to heal, grow, and thrive.  I have a strong belief that anything is possible.  And I refuse to live through a lens of fear.

Life is tough.  Shit happens.  Challenges are inevitable.  But I for one, am determined to let go of suffering & fear and stay in the groove instead.

Peace.  – T

photo 2

Family Love

photo_2[1]The da Silvas have finally returned “home” to Ohio.  As always, it is bittersweet.

Miss M is overjoyed to be back with all her stuffed animal friends…  Hubby is thrilled to be sleeping on his comfy king size bed again…  I’m happy to be back in my kitchen & reunited with my juicer.  But it’s always difficult leaving the northeast, our families, friends, and the cities we love and returning to the homogeneous heartland of the mid-west.

We had such a great week in NY…  Spending time with family, going to the beach, coaching hubby on his first ever trip to the driving range, sharing lots of laughs, and of course, taking Miss M into the city for her mandatory train rides.

I saw my surgeon on Thursday for post surgery follow-up.  The drain was removed.  After care plans discussed.  No driving (probably for another week or so)…  No vigorous exercise (for another 4 weeks or so)…  Wear my itchy surgical bra 24 hours/day for the next 4 weeks (yes, I even have to sleep in the damn thing).  Then return for another appointment in 4-6 weeks.

It’s been 11 days since the surgery and I’m feeling pretty good.  My mind is clearing.  My body continues to detox from the anesthesia, surgery and pain meds (as well as the less than stellar diet I’ve indulged in over the last week – I need a serious sugar detox!).  I started my new 30+ pills a day vitamin & supplement regime (including the ever important nattokinase to prevent further blood clots).

The pain has been minimal.  So minimal that it tricks me into thinking I can go about my normal activities…  Until I do.  And then the pain starts.  Just chopping veggies for a big salad tonight brought on some twinges of pain.  So I stopped.  I know my limits and I’m not going to push them.  It’s not worth it.

Hubby has been absolutely AMAZING today.  Helping with everything.  Anticipating what needs to be done.  Playing with Miss M.  Doing 4 loads of laundry (and folding too!).  Going on a massive grocery excursion with me.  Preparing the extra bedroom for my dad’s arrival.  I joked with him, “Who are you?  What happened to my husband?  And can I keep you instead?”

I took my second real shower today since the surgery and finally had a good look at my new breasts.  What a trip.

Most of my adult life I’ve had droopy DD cups (except when I was pregnant, gained 50 lbs, and went up to a 36F!).  Now all of a sudden, I have small perky breasts.  Even though my right breast is still real, after being lifted and reduced it’s so damn perky it looks fake to me.  I haven’t measured them yet.  Plus, they’re still totally swollen – so I have no idea what the end result will be but I’m guessing I’ll have a nice set of 34B cups.  And for the first time since I was 12 I may actually be able to go bra-less!!!  Which opens up a whole new world of clothing options (hello, lil’ strappy sundress :-)

I’m still undecided about having further surgery down the road to have a fake nipple reconstructed onto my breast.  Right now it seems totally unnecessary.  But I could change my mind at some point.  Never say never.

Big shout-outs to my family (both in Massachusetts and NY) for making this surgical experience so seamless and stress free.  For taking care of me, hubby, and Miss M…  For opening your homes to us…  Feeding us…  Showering Miss M with attention and love…  Agreeing to play “doctor” or make believe “beach” with her for the umpteenth time or keeping her busy with fun activities…  And helping us get through this difficult time.

I keep saying thank you.  But thank you just doesn’t seem sufficient.  Once again my gratitude cup runneth over.  And I am reminded of the importance of community.  Of family.  Of letting go and not trying to go it alone.

Asking for and accepting help is not weak.  It’s wise.

Much love.  – T


Surgery Update

I survived yet another surgery. Hopefully it’ll be my last.

By all accounts the surgery went well. I went in to the OR around 10am on Wednesday and woke up again around 3pm (although the surgery itself only took a few hours). Upon waking I wasn’t puking all over myself like last time (thank god!) but was still nauseous for a good 24 hours. The entire team at the Beth Israel Cancer Center was friendly, helpful, and competent. And although I haven’t looked at my breasts yet, hubby has, and he says they did a really good job. Yay!

The pain has been relatively minor. Controllable with just some extra strength tylenol. Today, so far, I’ve managed with no meds at all.

They’ve got me wrapped up in a surgical bra that I wear day and night until the swelling goes down. Then eventually I guess I’ll have to go and get remeasured and by myself some new bras!

There was a bit of encapsulation on my left breast – where the skin & muscle tissue had hardened around the expander. So there was a bit more “digging” on that side to get the expander out & my implant in. This resulted in the left side being more swollen & tender than my breast reduction side. I also ended up with a drain on the left side – Which got clogged yesterday & required a quick visit with my surgeon to fix. But all is well today.

Generally, everything seems easier & less painful this time around. I’m still feeling weak, tired, groggy, and dizzy a lot but know that will fade with time. I’m also feeling a strong urge to eat more protein (which my surgeon said is normal & necessary after surgery) so I’m going with it. Don’t think I’ll be chowing down on a big steak any time soon 😉 But I did have a big piece of salmon last night for dinner.

Tomorrow hubby & I check out of Hope Lodge in Manhattan and head to Long Island to stay with family. Miss M will also be arriving tomorrow with Auntie L. Hooray!! Hubby and I are missing our little girl like crazy! I’ve got a follow-up appointment with the surgeon on Thursday. And then we’re scheduled to fly back to Ohio next weekend.

Until then, we plan on relaxing, enjoying our time together, getting out in the sunshine, taking some train rides with Miss M, and toodling around NY.

I’m still so happy with my decision to do surgery here in NY. To have such an amazing surgical team. To be in the comforts of my favorite city. To be close to family. I wouldn’t have done it any other way.

Thanks to everyone for your continued prayers, support, love, and assistance. I am so blessed to have such an amazing community of family and friends all over the world who have truly been there for me, hubby, and Miss M throughout this cancer journey. I love you all. And will forever be grateful.

Peace. -T

Making Peace With the Unknown

Nature walk at Harmony Farm

Nature walk at Harmony Farm

“When you are in tune with the unknown, the known is peaceful.”  – quote from my Yogi chai tea this morning

This has been one of the bigger lessons on my cancer journey – Accepting the unknown and releasing the urge to control.  In doing so, I have come to a greater sense of peace.  Both with the unknown and the known.

I know I have surgery in 9 days.  The plane tickets are booked.  The housing arranged (thanks to the Hope Lodge in Manhattan and my Aunt & Uncle on Long Island).  My support team is lined up – Hubby is taking off from work to be by my side, my Massachusetts team is taking over on “mom” duty with Miss M, and Grandpa is flying from Bowen Island to help out post-surgery.  I know my surgeon plans to use LMA sedation and remove my chemo port while he’s in there.  I know today is the first day I’ve been without blood thinners since October (which is thrilling & terrifying at the same time).  And tonight is my last round of vitamins & supplements until after the surgery.

I also recognize that all of these seemingly “known” pieces of my life can change in a flash.  So I keep taking it as it comes.  Preparing for the immediate task at hand.  Thinking about the future – but not carving it out in stone.

Instead of stressing or worrying about the surgery I’m just staying focused on today.  Focused on this week.  Focused on the joyous weekend we have ahead of us in Massachusetts with our favorite people…  Visiting, going to shows, having sleepovers.  Miss M is beyond excited.  Our daily countdown to Friday’s departure elicits a loud “yippee” and a megawatt smile from her each time we talk about it.

Lately, Miss M is talking more and more about her feelings.  Her concerns about the surgery.  Her hatred of the cancer.  Her fear about me dying.  I’m just so happy she’s sharing this stuff with me now.  I know it helps that I’m talking to her about everything much more openly now too.

Our new morning ritual is to answer a question from the fantastic 3-year journal of Q&A for kids that cousin J from Astoria sent us – (thanks again J!).   Each day Miss M and I eat breakfast and ponder our answers to that day’s question.

Yesterday’s question was:  What do you try to forget about but can’t?

Miss M’s Answer:  “I don’t want to remember your cancer.”

Then a few days ago, during one of our kitchen dance parties Miss M started singing her own tune…  And I quote:

Go away cancer…   We don’t like you cancer…  We fight you cancer”  Belting it out at the top of her lungs to some make-believe tune that she made up while we shook our booties all around the kitchen.  It was priceless.

Yes, she’s still clingy.  Yes, she still has tantrums.  Yes, she still drives me crazy.  And yes, I still worry about her.  But less and less so lately.  I am putting into practice a lot of the parenting advice everyone’s offered.  I am sticking to my guns.  Not letting guilt fuel me.  Trying not to baby Miss M or solve all her problems.  Talking openly about what’s going on.  Taking her to therapy.  Taking her to more of my medical appointments (I even brought her in for a reiki session with me at Harmony Farm because she was so curious).  So far, it seems to be working.  So thanks to each and everyone one of you for your suggestions.  I am listening.  And it is working.

I finally feel that life is heading in a positive direction.  For the first time in a really, really long time.

At Friday’s appointment with my Oncologist he actually used the word REMISSION!  And called me his ‘miracle patient’.  Damn that feels good!

And while i know there are no guarantees, I am much more in tune with the unknown these days, and it makes dealing with the every day dramas and “knowns” of life (like surgery) so much easier.

Peace.  – T

photo 3

Checking out the animals after the Easter egg hunt at a nearby church.

Checking out the animals after the Easter egg hunt at a nearby church.

The Elasticity of Time

Outside the Neptune Diner on our wedding day - March 25, 2003

Outside the Neptune Diner on our wedding day – March 25, 2003

What a weird & emotional week it’s been.  Full of travel, sickness, milestones, pure joy, memories, and anniversaries…  To name a few.

Plus, I have now officially entered the “surgery prep” zone.

This morning I had my pre-surgery breast ultrasound…  In the exact same room that I found out I had breast cancer back in November 2011.  With the same technician.  She said she remembered me and asked how I was doing.   I still experienced the same nervous energy when she exited the room to consult with the doctor after the scan.  But today, unlike in 2011, the doctor did not come in the room when she returned.  Always a good sign.  This time the news is good.  My ultrasound does not show anything of concern.  Phewww…

Early last week I took a quick 24 hour trip to NY to meet with my plastic surgeon & my naturopath to discuss surgery prep and recovery.  My plastic surgeon assured me the procedure should be less severe than the last.   The surgery will be outpatient.  I will receive a “lighter” form of anesthesia   And I should be able to resume my normal activities much quicker.  My naturopath tweaked my diet and supplements.  Talked about my energy and stress levels.  And outlined her natural blood thinning strategy for post-surgery and beyond.

And now for the big news…  Drum roll please…  I finally get to stop taking Coumadin!!!!  Woohoo!

Friday I see my oncologist Dr. K to complete pre-surgery blood work and discuss my transition off blood thinners.  It’s been 6 months since they found the blood clot in my lung.  Of course going off Coumadin is both amazing and terrifying.  Every time I have problems breathing, a tickle in my throat, a cough that won’t let up, or a pain in my leg I wonder, “Is it that damn blood clot again?!?!”  But after surgery I will receive Heparin injections (another blood thinner).  And then start implementing my naturopath’s plan that I will stay on long-term.  So I’ll still be doing something to keep my blood levels in check.

The past week also brought with it two very joyful days…  Both revolving around anniversaries.

On Sunday Miss M and I went to the Dayton Ballet’s 75th Anniversary performance.  Miss M was transfixed (well, at least for the first 45 mins).  It was her first time at the ballet.  I watched her follow the dancers around the stage with her eyes.  And felt tears welling up in my own eyes as I thought of my mom and felt her presence around us.

I felt my mom’s energy strongly again yesterday – On my anniversary – When Hubby and I celebrated 10 years of marriage.  Wow!  A decade together already!

It was back in March 2003 that hubby and I sealed the deal in a two-minute civil ceremony at City Hall in Manhattan.  My mom & dad were the only guests.  Afterwards we dined at the Neptune Diner in Astoria – right under what was then the Astoria Blvd stop of the W & N trains.  I was 28.  Just back from teaching in Taiwan.  Working in advertising.  Submitting applications for grad school.  Hubby was a 26 year old illegal immigrant from Brazil with a sexy accent.  Driving a delivery truck during the day while attending college at night.

I’m pretty sure my family had its doubts about us.  But here we are.  Ten years later.

Our marriage has definitely had its ups & downs.  Hubby drives me crazy.  He pushes my buttons.  He calls me out on my shit.  And yet I love him.  When the chips are down he is there for me.  When I gain 30 lbs he still tells me I’m beautiful.  He accepts me for who I am & doesn’t try to change me.  When I’m diagnosed with metastatic breast cancer he assures me he isn’t going anywhere.

Time is such an elastic concept.  Expanding and contracting.  Abundant one day & scarce the next.  It can seem like forever and yet go by in a flash.  I can hardly believe I’ve been married for a whole decade…  That it’s been 16 months since I was diagnosed…  Almost 4 years since Miss M was born…  And almost 3 years since my mom died…

Where does the time go?

It is yet another reminder to enjoy the present moment.  Live fully.  Waste no time.  Dive in.  Don’t hold back.  Because time waits for no one.

Peace.  – T

At the alter

At the alter.

Waiting our turn at city hall.

Waiting our turn at city hall.

Don’t Discount The Hard Work

Me & Miss M at Rockefeller Center

Me & Miss M at Rockefeller Center

I know, I know…  I’ve been MIA lately.  I haven’t been writing nearly as many blog posts as I used to.

There are a number of reasons for this (none of them bad).  And most of it comes down to the fact that I’ve just been busy.  Busy with life.  Busy doing other writing (I entered a piece into the Glamour Magazine writing contest last week).  Busy traveling (another trip out east – which I’m still on).  Busy planning for the holidays.  Busy taking care of myself.  Busy having fun with Miss M.

This week Miss M and I took off for a week long journey to NY and Massachusetts.

I had three doctors appointments in NY.  Fortunately, Auntie L was gracious enough to drive down from Massachusetts to keep Miss M busy and happy while I was at the doctor.  Although I have to say, keeping Miss M happy in NYC is fairly easy task.  Just take a ride on the subway.  Of course, Miss M has her favourite lines:  the 7 train, the N & Q, and most recently the F train.  She would be in heaven just riding the trains all day long.  And we may just do that the next time we’re in town.

People often ask why I chose to have my surgeons in NYC even though I live in Ohio.  The answer is multifaceted.   Primarily, I chose NY because it is home.  Because it is familiar.  Because I am most comfortable here.  I chose the NY surgical team because they were recommended by a fellow breast cancer warrior and friend.  Honestly, I trust the NY doctors more.  They have more experience, impressive backgrounds, and amazing skills.  Plus, I have a soft spot for my team because they used to work at St. Vincent’s Hospital in the Village – where Miss M was born.

And of course I chose NY because it provides me with the perfect excuse to come back to my beloved Big Apple on a regular basis.  Being “forced” to return to NY every few weeks has been an amazing gift.  Spending time in NY gives me such a boost.  It allows me to reconnect with myself.  Brings me back to reality.  Re-energizes me.  Reminds me that there is life outside of suburban Ohio.

This week I received my usual check-in and saline injection from the plastic surgeon, as well as, my two-month follow up with the oncological surgeon who performed my mastectomy.  Both surgeons said all looks good.  I will return to NY two more times (later this month and once in January).  Then we will schedule the final surgery for April (where they remove the expander, put in my implant, and reduce & lift the other breast).

My third appointment this week was a consult with a new oncologist that a friend referred me to.  I was looking to get another opinion on what is next for me.  The oncologist is a young, charming, smartly dressed Park Avenue doctor.  One of the country’s top oncologists and one of New York’s best doctors, he is charismatic and dedicated to his patients.  He said I was a “complex” case.  He wanted more time to review my stack of medical papers before making further recommendations.  But he did seem to support the traditional stance that I should be taking meds for the rest of my life.  However, when I challenged this, by pointing out that my next set of scans will likely reveal no evidence of disease, and questioning if it is still necessary to take all these meds when there are no tumors evident, he admitted that is something to consider.

What I took away from the meeting was his recommendation that I stay on Herceptin for the rest of my life (or until my heart can’t take it anymore), and that I have my ovaries removed at some point in the near future.  He was impressed with the aggressive actions I’ve been taking thus far and encouraged me to stay on an aggressive path.

What I also took from this meeting was the feeling that I am being treated like all other stage four breast cancer patients.  Which I guess is to be expected.  Every doctor I see makes similar recommendations.  Seems to have similar expectations.  I get the sense that they don’t think I will live too long…  That they feel it is necessary to endlessly blast my body with pharmaceuticals (with minimal regard to long term side effects) assuming I won’t be around long enough to have those side effects.

This is where the difficulty lies for me.

I don’t see myself the same way.  Maybe I’m naive, or deluded with wishful thinking, but I honestly feel like I’m gonna be around for a long, long time.  And I don’t want to go through all this only to have a heart attack in 7 years as a result of some med I took.  Or die from another form of cancer or organ failure caused by the meds I am taking.

I still believe I can be the 1 percent that is cured.  The small percentage that keeps cancer at bay for the rest of my life.  And why not?  With all that I am doing, and committed to continuing, why can’t it be me?

I consistently feel like all the efforts I am making to live the healthiest life possible are not recognized by any of the doctors I see.  That anything outside of surgery or medication is discounted or ‘pooh-poohed’.

But I honestly believe that everything I am doing – from the vegan, plant based diet, to the daily exercise, vitamins & supplements, ongoing psychotherapy and mental/emotional work, removing toxins from my environment, and devotion to living my best possible life – makes a big difference.  I have flipped my life upside down and committed myself to a whole new way of living.  If my body/soul/and mind are healthy and balanced how can disease possibly take root?  I am not just doing one thing here…  One thing there…  I am doing EVERYTHING I possibly can.  And I will do this for the rest of my life if that is what I need to do to keep living.  And the beautiful thing is that the side effects of my new healthy lifestyle have me feeling and looking better than ever.  I have the energy to enjoy life.  I am more centered.  I am in a better place – despite having stage four cancer.

I am not done here on this planet, in this body, with this life.  I have so much more to give.  To teach.  To enjoy.  The doctors and their “standard treatment” options can take their death sentences and endless pharmaceuticals and shove ’em.  Do not discount my hard work!

I continue to embrace all possibilities.  And live with hope and faith rather than fear.

Love to all…  And I’ll try to start posting a little more often :-)

– T

Family dinner at Candle Cafe - one of many amazing NY vegan restaurants.

Family dinner at Candle Cafe – one of the many amazing NY vegan restaurants – with Miss M, Cousin J, and Auntie L

Times Square fun!!

Times Square fun!!

Time to Pull Myself Out of Sadness

A happy day – Grandpa is the special guest for music class at Miss M’s preschool.

The last couple of months have been a real struggle for me.

The surgery.  The recovery.  The changes to my everyday routines.  The change of the seasons.  Missing life in NYC.  Not loving life in Ohio.  The blood clot in my lung.  More hospital stays.  More medications & doctors visits.  One highly emotional and unruly toddler.  The lack of energy.  The low level depression that takes up too much space in my head & makes me not want to do much of anything (including write).  The never ending medical research.  The complicated medical decisions.  The difficult acknowledging of painful repressed feelings in therapy.  The demands of being a cancer patient, a mother, and a wife.

And the resistance to accepting that all of this is my new normal.

The ladies from my dad’s online support group recently expressed concern because they hadn’t seen a post from me in nearly 2 weeks.  Was everything OK?  Technically, yes.  Life goes on.  I’m breathing.  I’m alive.

But emotionally, psychologically, I feel smothered.  Blanketed by lethargy.  Trapped in a muddy mess.  Sad.  Frustrated.  Angry.  Despite all that I have, I find myself jealous of what others have.  I want to be carefree.  I want my worries to be about day-to-day crap and not about life or death crap.  I want simple decisions to be the focus of my day.  Like what to make for dinner.  Or what to wear.  Not decisions about side effects, medications, and potentially life threatening aches & pains.

I’m so frustrated with this confusing dance of treatment and consequences.  It seems each step I take towards getting rid of the cancer brings with it a big bag of unwanted complications.  Trying to chart the best path requires hours and hours of research, reading, and consulting with a host of healthcare professionals of varying specialties.

Right now I’m in the midst of deciding what to do about my breasts…  Should I move forward with breast reconstruction knowing there is always the possibility of complication, infection, or illness that would require further surgeries?  If I do, should I go with the silicone implant recommended by my plastic surgeon even though I’ve been hearing one too many horror stories about silicone implants being linked to autoimmune disorders and other sicknesses?   Should I push to have my other breast removed as a precautionary measure even though my surgeon is not recommending it and the insurance company doesn’t want to pay for it?  Or just have the other breast reduced and lifted which is a much easier surgery?  Does having a double mastectomy improve outcomes with metastatic disease?  If the cancer really wants to come back, won’t it come back regardless of whether there is a breast there or not?

Last week I made a quick 24 hour trip to NYC to meet with my plastic surgeon (where I was joined by my amazing and loving Auntie L who drove down from Massachusetts just to be with me and be my second set of ears at the appointment.  Thank you Auntie!!!).  I expressed my concerns to my plastic surgeon and he reassured me that the decisions were mine to make.  He told me I had already gone through the toughest part by having the expander put in.  We discussed my options.  He answered my questions.  And in the end, I decided to get a small amount (60 ccs) of saline injected into my expander.

The reality is that yes, I want boobs.  But I don’t want life threatening complications or numerous corrective surgeries.

My thinking right now is that I might-as-well move forward with the reconstruction – But keep my new breasts very small (in case we need to remove them or the implants), choose saline over silicone implants (for safety reasons), and be prepared to remove the implant immediately if there are concerns.

As I make my way through the new normal that is my life, I keep trying to find healthy ways to deal with the confusion, stress, and sadness (ways that don’t involve eating rows of cookies or being mean to loved ones).  Instead, I’m talking through stuff in therapy, carving out time for walks in nature & meditation sessions, trying to be truly in the moment with Miss M and appreciative of our time together and my time here on earth.

I’ve been allowing the sadness and feeling the depression.  Now I want to pull myself out.

Baby steps.  Just gotta take baby steps.  One step at a time.  Keep moving forward.  And trust that eventually I will pull myself out and make it to a better place.

Peace and love to all.  – T

Bowling fun with our best buds

Enjoying a beautiful fall day with Miss M

Blood Clots, Hospital Stays & New Medications

It’s been one hell of a week.

Last Thursday I was scheduled to fly to NYC to meet with my plastic surgeon to receive the second injection of fluid to expand my left breast tissue in preparation for my implant.  Instead, I ended up in the hospital in Ohio with a blood clot to the lung (otherwise known as a pulmonary embolism).  Scary shit!

In the days leading up to my hospitalization I’d been feeling pretty crappy, but I just chalked it up to the cold I was fighting and side effects from the Herceptin.  But things got worse.  All of a sudden I was out of breath just reading bedtime stories to Miss M.  I couldn’t lay down on my back to go to sleep.  It hurt like hell to take a deep breath.  I has a persistent scratchy cough.  I knew something was wrong.

Rather than take a “wait and see” approach and risk something horrible happening on my flight to NYC, we went to the local after hours clinic to get it checked out.  The doctor there said my lungs sounded OK but feared it may be a blood clot so he sent us to the emergency room.  After a bunch of tests, some blood work, and a very painful CT scan it was confirmed that yes, there was indeed a blood clot in my lung.  Luckily, it was small and we caught it early.  Immediately I was put on blood thinners and admitted to the hospital where I stayed for the next 3 days.

Of course I never imagined I would be at risk for blood clots.  I exercise daily.  I don’t smoke (anymore).  I’m not overweight or sedentary.  You never think these things will happen to you – until they do.  But apparently I have many of the risk factors for developing blood clots; a history of cancer, an intravenous port in my chest, and recent surgery immediately followed by an extremely long drive from NYC to Ohio.  So there ya go.

The good news (other than the obvious fact that I’m alive) is that my oncologist Dr. K is taking me off both the Herceptin and Tamoxifen.  Which is great, because I was just about to tell him that I no longer wanted to take the Tamoxifen anyway.

The bad news is that I now have a whole new host of minor health issues to worry about.  I will be taking blood thinners daily for the next 6 months (maybe longer).  The new meds don’t seem to have any seriously scary side effects but they do cause me to bruise all the time and put me at danger for excessive bleeding.  I have to be über careful not to fall, get cut, or hurt in any way.  Even a strong bump or whack against a heavy object (or attack by a energetic 3 year old??) can cause major internal bleeding that I may not even be aware of.  If I was cautious before because of my surgery scars, now I feel like I should be wearing a protective suit everywhere I go.

We also discovered two other potentially scary health issues from my time in the hospital…   Neither of which are confirmed but are to be monitored and re-tested in the months to come.

One, was a small spot on my liver that showed up on my CT scan.  It may be cancer.  It may be nothing at all.  When I did my CT scan at the hospital I was in a ton of pain and couldn’t lie down properly, stay still, or hold my breath when they wanted me to.  So the entire scan may not be accurate.  Regardless, we need to follow up on that with an MRI.  But I can’t do an MRI right now because of the expander that is in my breast.  Apparently it has some metal in it that interferes with the MRI.  So we’ll have to wait a few months until I get my implant in and do the follow-up scan.  They did check my liver functioning while I was in the hospital and said it looked great.  So for now, I’m just gonna assume all is well with my liver.

The other potential health issue is that my blood work was slightly elevated for an autoimmune disorder – Lupus Anticoagulant Syndrome – which causes thickening of the blood (and subsequently puts you at risk for blood clots).  To be clear, this doesn’t mean that I have Lupus.  They are two separate issues.  And we won’t even know if I actually have LA until we do another blood test (that must be taken months after the first test).  Plus, it seems lupus anticoagulants are often found in people taking antibiotics (of which I’ve been taking a lot lately), those who have cancer, inflammation, or infections.  So I’m hoping it is just related to my recent surgery and will be gone by the time we test again.

Despite all these health issues, I’m still feeling pretty good.  The blood thinners have taken away the pain and allowed me to breath easy again.  My energy is good.  My appetite is fine.  I’m healing from the mastectomy and gaining increased range of motion and strength in my left arm and chest every day.

Dr. K says I should be able to go to NY next week to meet with my plastic surgeon.  So that’s the plan for now.  But I haven’t booked my ticket just yet.

I am realizing (yet again) that I can never truly predict what will happen from day to day.  Any minute a new issue may arise.  And I am having a difficult time adjusting and accepting this new normal.  Because even though I may have long stretches of time where I’m ‘cancer free’, the reality is that metastatic disease often brings with it endless treatments and medications with endless complications and side effects and endless scans and tests to monitor it all.  My health is no longer something I can take for granted.  I can no longer just booze it up, eat whatever I want, and abuse my body like other people can.  I have to pay attention to every ache, every pain, any slight change in my body.  I have to be vigilant in my self-care and self-love.  I have to be informed about treatments, medications, and procedures and constantly weigh the benefits against the risks.

This is not an easy journey.  I’m pissed that this is my new normal.  I’m sad that I can’t just live my life in blissful ignorance.  I’m still trying to figure out the lesson breast cancer has come to teach me.  And still have many days where I just feel sorry for myself, and for my husband, daughter, family, and friends.

But I will never give up.  And I will never stop fighting.  I will not let cancer ruin my life.

Love to all.  – T

Heading Home

So it looks like we’ll be heading home to Ohio tomorrow.  The news is both good (in that I get to be back in my own space again & reunited with Miss M) and bad (in that I have to leave my beloved NYC).

As I type this, Hubby and Miss M are driving down I-95 from Massachusetts on their way to me.  I am so psyched to see my little silly goose and plant kisses all over her.  I’ve missed her so damn much!  But I’m so happy that she enjoyed her time with the family too.  My nana, aunties, cousins, and friends stepped up to the plate BIG TIME – Showering Miss M with endless love and attention…  Planning endless fun activities for her…   They made it so she never even had the chance to get upset about mommy & daddy being gone.  THANK YOU ALL SO MUCH!!!  Knowing that she was so well cared for and loved made this whole process so much easier.

Today, I’m just reveling in the fact that the surgery seems to have gone well – no complications, no infections, no swelling, no bleeding.  And every day I feel stronger, more mobile, and a little more like myself.

I met with my surgical oncologist Dr. Bernik on Wednesday.  We received the preliminary biopsy results that showed there were 2 cancerous tumors removed from my breast (one measuring 1.7 cm & the other 1.0 cm) as well as confirmation that the lymph node they removed tested negative for cancer (although it was noted that the tissue showed signs of prior lymph node involvement – which we knew already based on my previous scans).  We won’t receive the pathology details of my tumor makeup until next week.

The thing that has me curious is the different findings of the PET scan, MRI, and biopsy.  When I reread my test results yesterday I noticed the PET scan showed activity in only one area of my breast, the MRI showed 3 separate tumors, and the mastectomy biopsy found only 2 tumors.  So which one is correct?  I understand this is almost a moot point now that my breast is gone – but for the future I will always wonder, “Exactly how reliable are these scans I keep getting?”

Yesterday, I met with my Park Ave plastic surgeon Dr. Friedman.  From this point forward he is the one calling all the shots with the rebuilding of my breasts.  He seemed pleased with how everything looked and decided it was ok to remove my drain (only 1 week post surgery!) and gave me the green light to go home.

Going forward I will meet with him, here in NY, every 2 weeks to continue expanding my breast tissue and preparing for my next breast surgery to insert the implant and reduce & lift my other breast.  Of course I’m thrilled that I get to come back to NYC for a mini getaway every 2 weeks for the next few months :-)

Otherwise, I have to say the pain has been manageable.  I heard that mastectomy surgery was not horrendous on the pain spectrum (but never believed it till now).  I’m only taking Vicodin or Tylenol on an as needed basis (which seems to be only at night, before bed).  I’m walking around, opening doors, making my own coffee & toast for breakfast, getting out of bed unassisted, and using my left arm fairly well.  I still ask for help when I need it.  And I listen to my body and its limits.  I’m being careful not to push myself because I want to heal quick and heal well.

My stay at the Hope Lodge in Manhattan has been fantastic.  I’ve meet so many amazing people here (both cancer patients and their caregivers) from all over the United States.  I am thankful to the American Cancer Society and all those who work & volunteer here.  This a special place.

Now I plan to enjoy my final day in NYC…  Tomorrow it’s back to Ohio.

Love to all and big heartfelt thanks,  – T

A Surgical Success Story

The beautiful outdoor terrace at the American Cancer Society’s Hope Lodge where we’re staying in Midtown.

We did it!  With the love and support of my husband, friends, family, and blog readers (not to mention my skillful surgeons) I made it through surgery successfully!  Yay!  (knock on wood :-) )

The day of the surgery itself is a total blur to me.  I remember the prep.  I remember the chats with my surgeons Dr. Bernik and Dr. Friedman and the anesthesiologist before I went into the OR.  I remember the doctors sticking up for me and my right to have my iPod during the procedure right before I went under (despite some resistance from the nursing staff).  I remember waking up and feeling like total crap.  I remember throwing up multiple times.  I remember the pain when they transferred me from the OR stretcher to my bed.  I remember the persistent nausea that clung to me for hours upon hours – preventing me from talking or even opening my eyes.  I remember asking the nurse when I woke up at 3am when the nausea would end and her telling me I had to sleep it off.  I remember the beauty of the sky outside my hospital window as the sun rose up into the sky and shone its light onto the magnificent architecture of the buildings across from me and I realized I wasn’t nauseous any more.  (Hubby later told me he made sure to grab the bed closest to the window knowing I would want to see the Manhattan skyline when I finally came to.  Thank you my love!)

Most of everything else about the day of the surgery is a blur.  I was told the surgery itself took about 2 1/2 – 3 hours.  The sentinel lymph node biopsy they did led them to remove just one lymph node that tested negative for cancer and reaffirmed the scan findings that showed no more cancer in my lymph nodes.  So thankfully we did not have to remove a ton of lymph nodes for testing which means my chances of getting lymphodema down the road are pretty slim.

Now they are sending my breast tissue to the lab for testing.  It’s important to find out the make-up of the tumors (especially the new one that appeared since my last set of scans) so we can properly target any future treatments.  Of the three tumors that were in my left breast, each could require a different targeted therapy.  I will find out the pathology results at my post-op meeting with Dr. Bernik on Wednesday.

I will also be meeting with my plastic surgeon Dr. Friedman at some point this week.  I saw him the morning after the surgery and he told me that he was very pleased with how everything went and that he was able to put a sizable amount (120 cc’s) of fluid into the tissue expander already.  Then for the next 3-6 months I will be required to travel back to NYC every 2 weeks or so to visit Dr. Friedman while we stretch the skin to the desired size for my new implant.  Which will require yet another (albeit less intense) surgery down the road.

Today I’m just happy that I am feeling better and the pain is lessening.  Today is the first day I’m going without pain meds since the surgery.  It’s only 12:30pm – but so far so good.  And all in all, the pain really hasn’t been as horrible as I thought it would be.  I think having a c-section was way worse!

I still haven’t looked at my chest (or what’s left of it).  Not quite ready for that yet.  I’ve been crying a lot the last few days.  Just frustrated with this never ending cancer journey and so wanting to be done with it already but realizing it will never truly be over.

On a positive note, Hubby and I are enjoying the time together.  The surgery has only helped us grow closer and more secure in our love for one another.  Which is great.  But we both miss our darling Miss M like crazy.  I don’t know how I’m gonna wait another 5 whole days to see her, kiss her, smell her, hold her.  But we are just so thankful that during this time she is surrounded by the love of some of her favorite people and we know that she is being well taken care of.  We get videos and pictures with mini updates on what she’s doing all day long.  It puts a smile on our faces and takes a lot of the worry from our hearts.

Again, I want to thank everyone for your healing prayers and encouragement.  The day after my surgery I awoke to over 40 different emails, texts, and facebook messages from people all over the world wishing me well.  It made me feel so loved and supported amidst the hell and pain of life immediately after my surgery.  Thank you.  Really.  Thank you.

Big hugs to everyone.  And much gratitude for everything that you do for me and my family.

Peace.  -T

The view from our room!