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Tiny Warrior

Exactly two years after her major open surgery to remove the grapefruit-sized tumor, adrenal gland, kidney and spleen, Alexis was on the operating table yet again, this time for TACE # 4.  She’s become somewhat of a professional cancer fighter.  In the operating room, they called her the ‘tiny warrior’.

It’s dizzying to chronicle all that she has been through over these past two years:

April 2017 - major surgery to remove the grapefruit-sized tumor, adrenal gland, kidney and spleen

May 2017 – port implant surgery

May 2017 – chemotherapy round 1

June 2017 – chemotherapy round 2

July 2017 – chemotherapy round 3 + 4

August 2017 – began taking Mitotane (oral chemotherapy) daily

August 2017 – chemotherapy round 5

September 2017 – bowel obstruction surgery

October 2017 – chemotherapy round 6

November 2017 – chemotherapy round 7 + 8

January 2018 – chemotherapy round 9

February 2018 – chemotherapy round 10

April 2018 – TACE 1

April 2018 – chemotherapy round 11

June 2018 – TACE 2

October 2018 – TACE 3

December 2018 – chemotherapy round 12 [streptozocin] followed by ER & hospital stay

January 2019 – chemotherapy round 13 [streptozocin] followed by ER & hospital stay

January 2019 – chemotherapy round 14 [streptozocin]

February 2019 – chemotherapy round 15 [streptozocin]

March 2019 – chemotherapy round 16 [streptozocin + doxorubicin]

April 2019 – TACE 4

May 2019* – chemotherapy round 17 [streptozocin + doxorubicin]

 

For those keeping score, that’s 7 surgeries and 16 rounds of chemo, with round 17 soon approaching next week, in a span of 24 months.

The last journal entry left off with us pivoting to a different chemotherapy drug called Streptozocin after getting mixed results with TACE # 3 and essentially maxing out on the original chemotherapy cocktail of drugs.  A couple of the liver tumors did not respond to the TACE and grew in size.  One tumor in particular was in a very precarious spot, close in proximity to the IVC (inferior vena cava) making ablation and surgical options not possible.

So back to Streptozocin… this is typically a second line of chemo defense for ACC.  It's goal was to shrink the tumors and make surgical options possible once more.  It was not an easy regimen for Alexis to handle as it resulted in her being hospitalized after both rounds 1 and 2 -- each time her blood pressure would plummet causing dizziness and resulting in her fainting / falling down.  It took a cardiologist and a nephrologist to finally figure out what the underlying issues were with her blood pressure, blood sugar and kidney function.  New medications were added to the mix while others were pulled back in order to stabilize her system.  The good news however is that these first two rounds yielded 75% shrinkage in the liver tumors.  The doctors were beyond elated.  And so were we.

This good news was short lived however as is always the case with ACC it seems.  The next scan showed mixed results with some liver tumors growing once again while others remained stable.  The one “main” tumor close to the IVC in particular was of grave concern and the doctors added Doxorubicin to the regimen for the next two rounds of chemo that sandwiched a 4th TACE procedure.  The Doxorubicin (sometimes referred to as the “red devil” due to its really harsh side-effects) actually has a lifetime dose of 550 mg.  Alexis had already received it 8 times before.  It can decrease the heart’s pumping ability, lead to hair loss, loss of appetite, weakness, tiredness, nausea and vomiting just to name a few.  Alexis ended up losing her hair for a second time just this past week after “growing it out” for the past year.

It’s basically an all out war at this point, no holds barred.  Alexis takes approx. 20 pills each and every day to keep her whole, to keep her stable and to keep her going.  We keep reminding ourselves that as hard as this is, compared to where we were a year ago we have come a long way and that she is on a good trajectory.  We are by no means out of the woods but we are in a better place than we were.  The first 10 rounds of chemo did its job in that it made procedures such as TACE a realistic option where they were not before.  The doctors don’t talk about a cure when it comes to ACC.  There is no real cure.  The best we can hope for is to keep going, one step at a time, playing whack-a-mole with new things that pop up and keeping tabs on existing spots all while prolonging her life.  We can't yet say cure, but our hope is that if we continue prolonging and prolonging we have a chance to get to that cure endpoint.

So… next up is chemo round 17 this coming week followed by more scans in mid-May.  Another TACE is also likely in Alexis’ near future.  Some patients have been TACE’d more than 20 times according to Dr. Susman!  It's hard to believe but if that's what it takes, we'll take it!

Most people associate cancer with tumors, with surgeries, with chemotherapy and with losing ones hair.  It certainly is that but it is also so much more.  It wreaks havoc on all parts of your life.  You try and work around it as best as possible but it is always there, lurking in the shadows and the trivialities of everyday of life.  It manifests itself in many different ways, big and small.  Cancer is having dental side effects including tooth decay and mouth sores.  Cancer is peripheral neuropathy - a nerve disorder that can cause weakness, numbness, tingling, and pain - making walking or working out difficult and uncomfortable.  Cancer is losing your hair, growing it back out, styling it, and then losing it AGAIN.  Cancer is having to deal with Lovenox blood thinner injections twice a day in your belly, arms and legs and subsequent bruising.  Cancer shows up in new scars all over your body, in migraines that are so bad that they lead to vomiting and in non-stop fatigue and muscle weakness.  Cancer is nurses sticking you with needles ALL.THE.TIME.  Cancer is not having the strength to pick up your screaming 4 yr old off the ground.  Cancer is depression, loneliness and feeling like an outcast.  The emotional toll it takes on caregivers, family members and the entire support circle is immeasurable.  Cancer is going through ‘scanxiety’ – the uneasiness associated with waiting for scan results to come in every three months. Cancer manifests itself through the side effects associated with long-term steroid use – losing 20 lbs then gaining 20 lbs, osteoporosis, kidney issues, heart issues etc. – it's an all-out endocrine nightmare.  Cancer is having to wear an Adrenal Insufficiency bracelet at all times in case of emergency which can lead to serious complications and even death if not properly dealt with in a timely manner.  Cancer is putting your life on hold and not being able to plan ahead.

That is why we do what we can as opportunities present themselves like escaping to Great Wolf Lodge in February or the Trolls Experience in March.  Alexis and the fam went to the NYC ballet, saw the Shanghai Quartet, explored the High Line and the new Vessel in Manhattan's Hudson Yards, saw the flower show at Macy's, rode in a horse-drawn carriage through Central Park and visited Legoland.

We’ve had to cancel or reconfigure some of our plans for this spring but are hoping to do some fun things in the summer.  Alexis would really love to travel to Montana to celebrate our 11th wedding anniversary as well as have a vow renewal party in the near future.  But for now, it’s back to St. Francis Cancer Center where the nurses and staff absolutely adore Alexis.  One day, when she is cancer free, Alexis hopes to work there in some capacity and pay it forward.  That’s just the type of person that she is and always has been.

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Comments (15)

  • Marilyn clopman
    Marilyn clopman

    None of us know the right words to say, but loving the entire family as we do, we just want you to know how many people sincerely care and wish all of you the strength it will take to move on and WIN!

    2 months ago · Reply
  • Liz Bussi
    Liz Bussi

    Like Marilyn said above, there are few words we can share which will offer comfort but you always seem to know the right thing to say to convey exactly what you are all ensuring. We’re here for you and will continue to pray. You’re ALL warriors! 💕

    2 months ago · Reply
  • Meredith Clark
    Meredith Clark

    Seeing this timeline and hearing this detail there are just no words I can form... Alexis is the bravest and strongest person I know. I am here fighting with her.

    2 months ago · Reply
  • Mike Hoffman
    Mike Hoffman

    My heart breaks hearing all you are going through. You are always in my thoughts and prayers. I know we all make the offer but I truly mean it. If I can be of any assistance, please say the word. You are not alone and I hope you continue to fight with everything you have in you. We all love you and hope life can eventually return to a normalcy.

    2 months ago · Reply
  • Patti Kapla
    Patti Kapla

    Sending hope, prayers and positive wishes your way. Keep up the fight and keep being an amazing inspiration to all. #fuckcancer

    2 months ago · Reply
  • Paula poggi job
    Paula poggi job

    Life isn't fair, but your dialogue shows us all how honest, brave, and courageous you are. Everyone is pulling for you. Years from now we hopefully will look back and marvel at your strength. Much love and good karma. ❤

    2 months ago · Reply
  • Sarah Schwartz
    Sarah Schwartz

    Alexis and Dan, This is such a powerful post. Although I can't truly know what you're going through, I can feel your bravery, your heartache, your fear, your love, and your hope through these words. I'm sending love and positive thoughts always. Sarah

    2 months ago · Reply
  • Salvatore DAvola
    Salvatore DAvola

    Alexis - you continue to be my thoughts and prayers. Your name comes up often in the office when Annie, James, Momodou and I reminisce about our earlier days when you were a part of our team. We miss you and hope for the best.

    2 months ago · Reply
  • Mimi Goodman
    Mimi Goodman

    Dear Alexis, You are a beautiful, brave warrior , fighting this dread disease with every ounce of the amazing strength you have in you . None of us can ever completely understand what another human being is going through . But this post gave a small inkling of what you and your loved ones have endured these past few years. I think of you every day , sending love , light , strength , and positive energy .. in whatever small ways I can help. ( I hope to see you dancing with us at Sara & Chelsea’s wedding ) Love💖💖💖💖, Mimi

    2 months ago · Reply
  • Danielle Menard Mazurowski
    Danielle Menard Mazurowski

    Alexis and Dan, As fellow ACC fighter and caretaker, we are ALWAYS thinking of you and sending you our love. I believe our lives, the four of us, have changed for the better having met through our support group. We are blessed to be in your corner rooting for you and loving you. As many have said before, you, Alexis, are probably the strongest person we have met. Your strength both mentally and physically is unmatched. Your fight encourages me to keep going with my fight. Dan, you and Jay have so much in common. I feel like Alexis and I were blessed by having you each come into our lives. The two of you are the epitome of what a caregiver can do while finding time to do ALL THE THING. Jay and I love you both more than you will ever know. Much love from your ACC family, Danielle and Jay

    2 months ago · Reply
  • Joshua Schechter
    Joshua Schechter

    You will continue to be in our prayers. Dan, Alexis and the whole family - you guys are the strongest, most courageous people we know.

    2 months ago · Reply
  • Rich
    Rich

    Hey Lex, you are in my thoughts and prayer, always. ~Rich

    2 months ago · Reply
  • Rebecca Eigenbauer
    Rebecca Eigenbauer

    Dear Alexis, you and your family are in my thoughts and prayers. You are a tremendous woman with such a strong, loving family. Miss you and sending you love and peace. - Rebecca Eigenbauer

    2 months ago · Reply
  • Alex S. Avitabile
    Alex S. Avitabile

    Alexis: All that you have endured must have broken some world record. You are a GIANT WARRIOR! And we have much to learn from you and are all blessed to know you. You continue to amaze and inspire. I think and pray for you often. I would like to send you a copy of a book of fiction I self-published last year, entitled OCCUPATIONAL HAZARD. It's the first of a crime fiction series, featuring an attorney and his "semi-reformed" Mafioso cousin, both of whom grew up (like me) back in the day on the mean streets of what was then called South Brooklyn. If someone would email me ([email protected]) your address, I will send you a signed copy. If you visit the book's website (AlandMickForte.net), you will find an excerpt and backstory and other things which I think you will enjoy. Alex S. Avitabile

    2 months ago · Reply
  • Jason Lisogorsky
    Jason Lisogorsky

    Hey Lex, Reading about your fight and determination is so inspiring to me. You are a tremendous fighter and just know I am always here for support to you. My prayers and wishes for your continued recovery and health will always be there. Love Jason

    2 months ago · Reply

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