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Latest journal entry

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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