“Good morning my dear friends.”
Starts Alfie Byrne, a Dublin Transit System bus conductor in 1964, or so the story goes in the musical A Man of No Importance. It is the way he greets the passengers on the daily bus route who also are amateur actors in his community theatre troupe.
“Good morning Mr. Byrne!”
They reply in a sing-songy, obedient student manner.
(The indomitable, late Roger Rees and co. of the original off-broadway cast of AMONI)
He has been thrust into a relationship with a disparate group of people. They all come together for the same reason – the love of story telling and in particular, theatre. And they are all riding through life together, daily, on the same bus.
Alfie’s love for all things Oscar Wilde is beside the point in this blog, although it is an incredible story of unrequited love and acceptance of who he is, by himself and by his community. What is the point is the sense of community and the love and support by one and all, for one and all.
I see our coming together of disparate peoples, through social media and this blog, through our collective daily grinds with a love for story telling, through theatre mainly, as the cohesiveness of our relationship.
So I greet you with these words as I delve into an update of Marin’s health.
“Hello my dear friends.”
When we updated you last we told you that Marin’s ovarian cancer had recurred. She was being treated with a new HT (Healing Treatment) drug called Pemetrexed.
As much as we wanted that Super-hero sounding HT to work it proved to not have the magic punch we desperately needed.
In my previous blog, posted July of 2016, I mentioned Marin was doing a reading for James Lapine on Martha’s Vineyard. While there she experienced incredible abdominal pain. Everyone involved was so very understanding and accommodating as she needed to visit the ER and was out of commission a bit.
She visited the ER at the local hospital only to discover, to her great dismay, that the nurse on duty didn’t know what the BRCA gene mutation was. The gene mutation didn’t play into anything the nurse could have done to help Marin with her pain and this specific situation but in the course of discussing Marin’s medical history it came up and she hadn’t heard of it.
The fact that someone in the medical field didn’t know that the BRCA gene mutation is one of the only early detection tests for ovarian cancer was mind-blowing and only increased our determination to spread that word around.
More of that in another blog… BUT if anyone in your family history, on either side (mother or father) has had breast, ovarian, prostate or colon cancer, yes, this affects men as well as women, you should be eligible to have the BRCA jean mutation blood test and have it covered by your insurance. The previous “profile” for the BRCA jean mutation omitted Marin from having the test i.e. of Ashkanazi Jew decent or having Breast or Ovarian Cancer on the mother’s side… Marin’s was passed through her father’s side of the family and she’s not of Jewish decent.
If you have the BRCA 1 or 2 gene mutation you have a higher likelihood of getting any of those cancers and there are additional treatments that you will also be eligible for.
Educate yourself on the BRCA gene.
(Heavy, I know, but information you all need to know.)
What we didn’t know in July, but have come to subsequently understand, is that Marin was having a bowel blockage due to the “visiting” cancer cells. Some of the cells had come to rest on the bowel and caused the bowel to become irritated and therefore close off in a spot or two.
Too Much Information? (TMI?) Sorry, this blog isn’t necessarily a cheery one. Informative, real, maybe a little clinical and fact based but I’ll try my best at levity with pictures of talking toilets and such.
After the reading on Martha’s Vineyard, and after the blockage resolved itself, the very next week Marin was off to do a closed-door reading of the Mary Poppins Returns movie. She is not going to be in the movie but since Meryl Streep wasn’t available Marin read and sang her part for her.
What a fun time.
(not Marin Mazzie)
Since she had a bowel obstruction last year (different than a blockage. More painful and must be supervised in a hospital), Marin’s diet had to be restricted to a low residue aka low/no fiber diet. Marin has always been, since I’ve known her, 20 years now, a very healthy eater. A more examplary student of nutrition would be hard to find.
But since then she has subsisted on only easily digestible foods that would move through her bowels effortlessly: white bread, potatoes, eggs, yogurt, cheeses… I know, “doesn’t sound too bad” but it is a very limited diet and can get monotonous quickly, especially when you are a bit of a foodie.
And after the MV blockage, or as I like to call it the MF blockage, Marin had to become much more vigilant about the food intake which is kind of ridiculous as she was already extremely vigilant even militant about it all.
I was working at Williamstown Theatre Festival, or WTF, this summer and Marin was jotting around here and there, MV and NYC, doing readings and not feeling all her best but managing.
During our technical rehearsal time (aka Tech), the time dedicated to adding the lights, sets, costumes etc… to the process, we have what we call 10 out of 12s. When we work 12 hour days in order to put all of these elements together in a very short amount of time before the first audiences arrive.
It is a very intense, long and laborious time of work but crucial.
Unlike Broadway, and other theatres where there may be multiple 10 out of 12 days, at WTF we had only one 10 out of 12 day. And it started with a phone call that Marin was in the hospital at Memorial Sloan Kettering with more abdominal pain.
I was four hours away in Williamstown, MA but my good and gracious director suggested that I go down to be with Marin. But as the time was already short with tech, and that Marin was accompanied by a good friend, she and I felt it wasn’t necessary. But, of course, my stress level was out of the roof, worried that the HT wasn’t working, which it wasn’t. Sooo… what is the next step?
My cast mates were a dream of understanding and support. There is a reason we, in the theatre, refer to one another as family.
Marin didn’t need to stay at the hospital – thank goodness – but with two hospital visits in such a short period of time, both with extreme abdominal pain, this was starting to add up to a terrible unease of waiting for that proverbial “other shoe to drop”.
BUT… the show must go on… literally.
On a day off from WTF, Marin joined me and our wonderful trio of Joseph Thalken (piano/MD), Pete Donovan (bass) and Rich Rosenzweig (drums) as we made an encore appearance at Barrington Stage Co. in Pittsfield, MA where we reprised an embellished version of the concert we did the previous summer. “Broadway and Beyond”
It was another triumph of music and storytelling to a sold out house. A show that our friend William Finn said “You need to do this in New York. It should be seen everywhere”. We’ll give it some serious thought.
Singing together has always been a very special and wonderful experience for us but since our journey, over the last year and a half, songs have taken on profound new meanings. I won’t go into specific lyrics but I’ll list a few songs that resonate in a deeper way that, if you know the songs, you’ll understand what I mean.
“Back To Before”, “Move On”, “Not a Day Goes By”, “I Miss The Music” and “And The World Goes Round”
That last one, by Kander & Ebb, was the title of my most recent blog entry. As we were adjusting our set-list for the concert, Marin took a glance at those lyrics, saw them anew, and thought she should sing it in the concert and briefly discuss her journey.
I’m paraphrasing here but what she essentially saw in the lyric before May 2015 was a song of defiance with a mounting resolve that had anger toward all that has happened.
And sometimes a friend starts treating you bad
But the world goes round
And sometimes your heart breaks
With a deafing sound
Somebody loses, and somebody wins
And one day it’s kicks then it’s kicks in the shins
But the planet spins
And the world goes round.
What she saw now was a song of, not resignation, but of an acceptance that life “is what it is” but the world will continue to spin and life will continue its course, whatever that may be.
Sometimes your dreams get broken in pieces
But that shouldn’t altar a thing
Take it from me, there’s till going to be
A summer, a winter, a spring and a fall.
Marin’s determination to survive and to help others with their journeys, through sharing her experiences, is what has been the inner “little engine that could” to move her toward that goal.
But goddamnit if life doesn’t have surprises just sitting there, in the dark, waiting for us.
On August 16th there was a fire in our apartment building four floors above us. No one was injured, thank god, but the damage to all the apartments in our line was really something else.
We were still upstate in the Berkshires, me doing my show at WTF, so Marin took the train down to assess the damage.
We ended up getting the least amount of damage, but it still ruined our master bed & bath ceilings and walls. The drywall ceiling had three large holes cut into it so that the emergency team could dry everything out between the floors. Sheetrock had been ripped, torn and broken and there was drywall dust and other unidentifiable rubble from the building’s 116 year old ceiling and floors permeating the air.
Not an ideal place for someone fighting cancer and going through chemotherapy to convalesce.
But while the walls and ceilings were drying out we were upstate at our house where my mother would soon be joining us for the last week of my WTF run.
But on the train ride from NYC back up to the Berkshires Marin started feeling incredible back pain. An intolerable pain that kept her up at night, squirming and writhing in pain for several days.
We couldn’t figure it out.
Mom saw the play and stayed with us for several days so that we might have a little alone time without the pressure of a show to do. Should be fun…
… it wasn’t.
… too much pain.
I put mom on the plane back to St. Louis and Marin, Oscar and I headed back down to “the mean old city” as Oscar calls it.
(Not Oscar but it sums up how he feels about leaving the country and going back to NYC)
We packed up and got back to our dusty and devastated digs in NYC where, out of necessity, I duct taped paint drop-cloths to the ceiling and walls to cover up the dust and rubble from falling in on us. I also had two high quality air purifiers going ’round the clock to help clean out the air.
Marin headed back to Memorial Sloan Kettering to see what was going on with her pain and I headed back to the Ambassador theatre on Broadway to resume my duties as Billy Flynn in CHICAGO the musical.
The doctors kept her overnight to drain her lung of a fluid that had built up because of the cancer. We went through this last year when they drained 6 liters of fluid, or ascites, from Marin’s lung and abdomen. This time it was just the lung and they got a liter and a half.
(The actual fluid. Sorry, I had the picture and… well, you know, “accuracy” and all.)
The fluid has nothing really to do with the lung. The ascites is in the abdomen but our lungs are porous and because of that it allows the fluid into the lungs. (The things you learn…)
Marin received instant relief from the draining although she was extremely sore and tender from the doctor sticking a tube through her back, into her lung, draining the fluid, which of course collapses the lung a bit, and while it’s re-inflating?… oh yeah, that’s painful too.
Meanwhile, as I said, I started back at CHICAGO the same day Marin was having her lung drained. Talk about bad timing.
In CHICAGO-land we have Wednesdays off. And the next day we had off, a week after I started back, the company of CHICAGO put on a free concert for the city of New York in Central Park.
Should be fun…
… it wasn’t…
because Marin was in more abdominal pain and it caused her to cancel a few enjoyable appointments she had planned like a lunch with a dear friend, and a massage with a great massage therapist who has been helping with so many other aches and pains due to the cancer/chemo combo. These few enjoyable events are sometimes the only thing keeping you sane and keeping you going.
… but, what?
…The show must go on (goddamnit – muttered under breath)
We know now that the Pemetrexed was not working. So, it was time to switch up the game plan! Dr. O’C (Marin’s oncologist Dr. Roisin O’Cearbhaill) assured us we had other HT options and even though this one didn’t work we’ll move on to another one…
Doxyl and Bevacizumab (Avastin).
As Marin is like to do, she’d named the HT “a visit with her good friends Bev and Doxy”. Two girlfriends who are going to see her through the healing times.
(Hardly a party… but a positive mindset does wonders for the healing spirit.)
Above: Marin and one of her HT nurses starting the Bev & Doxy party. Icepacks on hands and feet because side affects include blistering. M also had to soak her feet nightly and put Bag Balm, a super intense moisturizer, on her feet and hands at night, with cotton socks and gloves to sleep in.
Alrighty then, new HT going in, things will start getting a lot better soon!
So, let’s have a lovely Labor Day visit from one of Marin’s oldest and dearest friends. You may remember Helen & Doug Brooks from a previous blog. Marin and Helen have known each other since pre-school days.
“People let me tell you ’bout my best friend
(S)He’s a warm hearted person who’ll love me till the end”
(Harry Nilsson from “The Courtship of Eddie’s Father” starring Bill Bixby)
(Mark Mazzie, Marin, Bill Bixby & Helen Brooks at an ABC affiliate, star visit to WREX-TV in Rockford, IL. Jack Mazzie, Marin’s dad, was the station manager)
They both visited last year during Marin’s HT and wanted to come back to have a bit of a normal long weekend with us.
As a diversion to all things crappy, pun intended, and looking for a bit of divine inspiration we decided to travel a few blocks to the largest anglican cathedral and church in the world (don’t tell the Liverpool Cathedral hear that – a bit of a controversy there), St. John The Divine, located on the Upper West Side of Manhattan.
It truly is divine, if unfinished… but aren’t we all.
Marin and I don’t pretend to corner the market on cancer stories. Our journey is ours and others have their own ways of dealing and coping.
A lovely woman called Karen Walsh who also is an actor, and going through a rough regimen of chemotherapy and cancer related obstacles, has taken to taking a series of awesome photos with friends at her healing therapy sessions. Her positive attack on things is very inspiring. Karen Walsh’s story.
Karen asked Marin to join her in a glamour shot with other actors and a talent agent who are all currently undergoing HT. It was an inspiring day replete with makeup designed by a professional team.
Should be fun…
… and it was until Marin started to have a major bowel obstruction, by the end of the shoot, and I mean major.
I hope you never have to experience a bowel obstruction. The incredible pain and cramping, so harsh that it shoves you into a fetal position, writhing in pain, rocking back and forth in some unconscious/subconscious, animal-instinct physicality that defies explanation but that we all know, somehow.
Ironically, the photo shoot was at New York Presbyterian hospital just next door to MSK. The real irony being that Marin made her way all the way home, to the opposite side of Manhattan, before realizing that this wasn’t going to get better and she needed to head back to MSK.
The ER at Memorial Sloan Kettering is incredible. Since it is a cancer center and not a general hospital, everyone there specializes in exactly what your needs are. Every visit, doctor’s note, prescribed medication, scan, test result… everything is on your chart and they can tell quickly the next step to take.
As we’ve come to learn, the only way to stop the pain of an obstruction is to stop the bowels from moving. There is a blockage and your “little bag of worms” as one doctor explained, are constantly moving. Just thinking of food and especially smelling food will set your bowels wriggling toward the “finish line” so to speak.
You have to stop them/it.
You must STOP taking anything in: water. food. STOP!!! And try to stop your bowels from moving by using morphine and rest. And pray that the obstruction resolves itself in it’s own time, usually days, and that you don’t have to have surgery to remove the obstructions especially if you have very little to no bowel left to remove. Marin’s surgery, last year, left her with not much wiggle room there. Bad pun – intended. (sorry. levity. trying.)
Once the pain has subsided a bit and you are waiting to be admitted to the hospital only then can you resume normal activities. Like calling your mother and telling her what kind of horrific pain you were in and that the mystery of the “bowel obstruction” is now a strange and very real reality.
(I call this one “Dazed and Confused” which is referring to me not the morphined-up lady in the bed on her phone.)
I know this is a long tale. Sorry to say, this is only the beginning. I will try and condense some things in order to “keep the show running along”.
Marin was hospitalized for 6 days. No eating or drinking until signs that the bowel obstruction had corrected itself. X-rays and CT scans are good but the real test is passing wind and passing stool. Once that starts happening you can start on ice chips, graduating to sipping water (seeing how it all goes) then a clear liquid diet (still good?), an all liquid diet that includes nothing of particular interest like jello and Italian ices etc… unless you haven’t eaten in four days – then that stuff sounds delish!
During this hospital visit one of our concerns was if we were going to be discharged in time to make our trip to Washington DC with Cancer Support Community (CSC) and Ovarian Cancer Research Fund Alliance (OCRFA) to visit the White House to speak with someone on the Council for Women and Girls, speak privately with representatives on The Hill and for Marin to speak at the second annual Ovarian Cancer Caucus headed by Sen. Rosa DeLauro (D-Connecticut) and Sen. Sean Duffy. (R-Wisconsin).
But before we left for DC, Marin was honored by Lincoln Center Theatre, along with a few other artists, for their contribution to the theatre’s ’15/’16 theatre season with The Joan Cullman Award. Her Mrs. Anna Leonowens in The King & I was not to be missed. <3
And the very next day we were off to DC!
Here’s where I’ll condense a bit. These events hold blogs in and unto themselves. I will write more on them later.
9/7 – 9/13: Six days hospitalized for bowel obstruction
9/19: Lincoln Center Theatre Joan Cullman Award dinner
9/20: Drive to DC
9/20: Meeting at The White House, meeting in the private offices of multiple representatives on The Hill, giving a short speech at Second Annual Ovarian Cancer Caucus. Drive home to NYC after full day of meetings.
9/25: Broadway Flea Market to support Broadway Cares/Equity Fights Aids.
(The color teal is for Ovarian Cancer Awareness month which is September!)
9/26: Video shoot for Cancer & Careers annual gala.
Finished video here.
Then for the rest of that particular week the only thing scheduled were some enjoyable social engagements with friends. Friends who have been chomping at the bit to see Marin since all of this cancer journey had taken place, some who had seen her regularly throughout… Marin has a lot of friends who care for her deeply.
Two days before Marin has an HT session she goes to MSK for blood to be drawn to see if her white blood cell count is high enough for her to have treatment that week. Without fail, to this day, Marin, with her healthy body, other than the cancer, and her strong mind and will, she has always had a sufficient white blood cell count to have HT.
On that Friday 9/30 Marin had a HT party with Bev and Doxy. Three days later she was back in the hospital with another bowel obstruction.
This one was worse than the previous one, as if I ever thought that could be possible. I mentioned the extreme cramping and abdominal pain? Now add nausea and vomiting. Because of that little added bonus Marin got to have an NG tube inserted. That is a tube that goes into your nose, down your throat and into your stomach to drain anything and everything that is “north” of the obstruction. That is why she was throwing up because there was nowhere for the fluid to go SO they bring it back up a tube and out your nose.
I had one when I was in the fifth grade and had my appendix out. I remember distinctly it being very uncomfortable and very weird. Talking was odd and laborious and swallowing was no easy task either. It is an old but tried and true/effective process that works, always has, and that’s why they still do it. If we could have avoided it we would have but the relief that it ultimately brings is sort of worth it. (He begrudgingly admits)
The NG tube has it’s purpose but it also causes great discomfort to your throat. I was hyper aware of the care I felt the technician needed to use with a plastic tube so close to Marin’s vocal chords. He didn’t appreciate my being so emphatic that he take GREAT care because she is a renowned and beloved singer. But that’s what husbands and caregivers are for. You are your loved ones greatest advocate. So advocate.
Let me take a moment to explain what else a caregiver does.
- Sit around.
- Watch every little move you make to assure you are not in pain.
- If you are in pain they go and find a nurse or doctor.
- They sit by anxiously as said professional does their job.
- Observe, listen and ask any follow up or missed questions.
- Sit around hoping there are no other episodes of pain or discomfort.
- Spend hours and hours doing this.
- Text family and friends to let them know what is happening.
- Browse social media for light reading because cracking open a novel isn’t practical.
- Post “heavily veiled” info about loved one and situation without giving too much away.
- Nap sitting up.
- Drink coffee.
- Drink water.
Repeat until room is available upstairs for loved one to be admitted. Then…
- Make bed comfortable with appropriate number of pillows and blankets.
- Unpack slippers, robe, iPad, books, lip balm, eye mask, ear plugs, ear buds, hand moisturizer and comfy socks.
- Plug in iPhone and iPad chargers in godforsaken impractical receptacles behind bed.
- Wait for in-law or close friend to relieve you so you can go do your little musical on Broadway.
Then go to work and pretend all is ok, that your loved one isn’t in pain, in a cold sterile (though efficient and professional) hospital, not able to eat or drink for the foreseeable future.
For the second time in four weeks.
Sing, dance, act… and respond to very loving and caring cast mates that “everything is going to be okay it’s just going to take a little time”. Sometimes taking care of their worries and concerns as well.
Oh yeah, and this visit will last a day longer (seven days) than the last bowel obstruction hospital visit.
AND it won’t be the last visit over the next several months, though none as long as the first two visits.
I must say that even though it was tiring and emotionally draining to go to work sometimes, it was also a great diversion to escape into one of the greatest occupations in the world. I got to go to a place where I could reinvest my day’s strüm ünd dräng into a character and a story, sing like it’s my last time to sing, as now, everything I do and say and see, seems to have an undulating undercurrent of the unknown and the finite.
(But seriously folks… No. Seriously.)
Well. The bowel obstruction resolved on it’s own again. That was a huge relief. The looming threat of surgery has weighed heavily on both of us. It is an option, yes, but it also will absolutely and forever change the way we live and function.
I’ll shelve that fear as it is not our reality. I will not live in an alternative reality when this one is already complicated enough.
Guess who’s having a Biiirrrtthhday?!?
And guess who is still in the hoooosspital?!?
THANK GOD Marin’s surgeon, Dr. Abu-Rustum, when he saw Marin two days before her birthday which is Oct. 9th, said that he was sending her home. She was released from MSK on her birthday.
I had two shows that day and at intermission of the evening show my dresser, Jo-Ann Bethel, said there was something for Marin downstairs in the wardrobe room.
The entire company, orchestra and crew bought every single sunflower there was in mid-town Manhattan and brought it to be combined into the largest sunflower party of bouquets I’ve ever seen. And a special, huge, birthday card was made and signed by every single person at the Ambassador Theatre.
I was floored and so was Marin!
It was so massive Raymond Bokhur aka Amos Hart in CHICAGO gave me a ride home in his overstuffed with sunflowers car.
On Monday October 17th Marin was back at it. Making a tv appearance on WPIX to talk about Ovarian Cancer Awareness. video and we both made a personal appearance that day that was live streamed from the Drama Book Shop talking about our careers and cancer.
On Tuesday the 18th Marin started a four week workshop of a new, and really freakin’ exciting, reworking of PAL JOEY, playing Vera. As her character isn’t in every scene we took an opportunity to escape to the house upstate for a couple of days for a much needed break.
Our wedding anniversary is October 19th and we celebrated 19 years married this year. We had a lovely retreat to the house and dinner at a quaint and quiet new restaurant and a short, easy hike to Bash Bish Falls one of our favorite places in the world.
(The falls were a little anemic that visit.)
As Marin was rehearsing PAL JOEY and I was doing CHICAGO, the Phyllis Newman Women’s Health Initiative, which is under the auspices of The Actor’s Fund and Broadway Cares/Equity Fights AIDS, honored Marin on October 24th with the first “Nothing Like a Dame” Award.
It was a joyous celebration of all that the Initiative does for women and women specific healthcare. The initiative was celebrating 20 years interestingly as Marin and I celebrated 20 years being together. I love that fact.
Many, many of Broadway’s most celebrated lead ladies were present to honor the Initiative and specifically Marin. It was an extremely moving evening.
I had the honor, of the only man participating, aside from Joseph Thalken who played for Marin, to introduce the woman of honor. I hesitate to post my remarks here, as this blog might very well be the longest blog ever written but, hey, continuity sake and all…
I mean, just look at the ladies who honored her: Tonya Pinkins, Christine Ebersole, LaChanze, Julie Halston, Karen Ziemba, Melissa Errico, Donna Murphy, Mary Beth Piel, Judy Kuhn, Bebe Neuwirth and that’s just a smattering of all the leading ladies of Broadway who would and who do show up for Marin on a regular basis to support her.
The videographer for the evening, Jonathan Frank, shared this video montage with me that he was asked to make for the evening. They ended up not using it but…, well, ya just gotta see it. Marin montage.
I also want to share Marin’s performance of “And The World Goes Round” by Kander & Ebb as arranged by our dear friend Joseph Thalken, also on piano.
Honestly, I could not have been more happy and grateful for the outpouring of love and support for the love of my life.
WHAT A NIGHT!
But as Fred Ebb wrote “one day it’s kicks, then it’s kicks in the shins”.
The very next day found her heading to MSK.
As the universe would have it, Marin was at rehearsal for PAL JOEY where they were doing some incredible table work (sitting around reading and discussing the play with the director and playwright – actual table sometimes involved). In fact it was going so we’ll that they extended the rehearsal for an hour beyond their scheduled time.
Marin wasn’t feeling very well and her stage manager, who accompanied her to the ER at MSK, said she could see it on her face but she stuck it out till the rehearsal was over. Yup, you guessed it, another bowel obstruction.
You may feel a certain monotony of me telling you she was in for another bowel obstruction but can you imagine the monotony, no, monotonous TORTURE of having to endure a bowel obstruction over and over again?!?
Ok, let’s keep this going now…
She was in for two days.
Bowel obstruction cleared on it’s own as it will two more times after this one with hospital stays.
She performed two presentations of PAL JOEY and it was a smash. She was incredible and NO ONE knew she was sick other than the team, cast, me and her agent. You just don’t know how good an actor is until they pull off a feat like that.
Now we are really getting good with how to deal with such an obstruction and the signs of it’s impending arrival. NO EATING, NO DRINKING, BOWEL REST, MORPHINE to help everything calm down. We actually don’t need to go to the hospital unless Marin is experiencing an actual obstruction and vomiting.
We started home hydrating as Marin still has her chemo Mediport which allows very easy access. We give Marin 1,000ml of saline with added potassium and magnesium to keep her going. Quite literally…
…as she wasn’t able to eat for the past 6+ weeks.
How do you deal with the fact that your love can now no longer eat anything? Everything she puts into her body causes her pain.
A clear liquid diet is all she was able to have for weeks. WEEKS!
All she would be able to handle was a half a cup of clear broth and MAYBE a soft-boiled egg.
OK, the longest story ever made mercifully, slightly shorter.
Friends were making her clear organic chicken broth, organic beet broth, organic watermelon ice, bone marrow broth… all sifted and strained so that not even the slightest particle might get caught in her bowel and cause her excruciating pain.
I finally left CHICAGO to be home full time with her so that I could manage not only the hydration but the round the clock medications. Fentanyl patch, Dilaudid (as a “breakthrough” opioid in case the Fentanyl wasn’t enough), Omepresole (acid reflux), Zantac (added reflux med), the reflux was out of the world crazy shooting up her throat at times like a geyser of fire water, a litany of stool softeners and a thorough bowel regimen to help her “go” since the pain meds cause constipation, anti-nausea medication…
I tell ya the list did go on and on and on and on…
We have a chalkboard in the kitchen with drugs and times drugs were taken.
Thanksgiving consisted of a clear organic turkey broth a friend made but Marin wasn’t able to eat much of it at all as she was in bed almost the entire day in constant pain.
Over this period of time of no eating, I took to sneaking meals in the den or waiting until Marin was in bed, which was usually no later than 6pm, just because of the guilt I felt for being able to eat anything and everything. And believe me I was eating anything AND everything.
If there is one thing I’m good at, it’s stress eating and stress drinking… pretty good at both.
To get back to the HT aspect of this all. Dr. O’C took Marin off of the Bev and Doxy party train cause that party was going no where.
Now she is on a regimen of Carboplatin (an old HT friend from last year – pretty potent stuff) and Gemcitibine (which sounds like a latin bandleader to me). No fancy or fun idea about this combo. We just want the damn stuff to work.
And it is.
I say this with a lot of reservation for as much as I’m revealing to you all there are still loads of stuff you aren’t going to hear about. The ups have been swiftly followed by the downs. I approach ALL good news with a suspicious eye. Right now I am happy to say that Marin’s CA-125 has been regularly declining over the last 11 weeks of being on this particular treatment. But while that is happening Marin has been wasting away.
There is not an inch of exaggeration in that statement.
Since she hasn’t been able to eat, because of the pain, she had whittled down to a mere 104 lbs. That is WAY under her normal or even lowest weight.
As recently as December 14th, a week ago last Wednesday, we were back at MSK. This time to seek help from the Palliative Care/Pain Management Team.
Now don’t get all worried! Slow down!
Palliative Care is: a specialized medical care for people with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
It is NOT Hospice!
Hospice is: an end-of-life care. A team of health care professionals and volunteers provides it. They give medical, psychological, and spiritual support. The goal of the care is to help people who are dying have peace, comfort, and dignity.
But we did need help with Marin’s pain medication ASAP! And we were introduced to an incredible palliative team PA Jessica Goldberg who has found the right pain medication that actually is working!
The Fentanyl and Dilaudid were not working but now we are on Methadone. Yup, good old meth for my baby. Nothing but the best.
It is working!
Marin was pain free for the first time in almost two months just a week ago Thursday.
As she was in the hospital for the pain management care we watched over the next few days as the bowel obstructions (there have been multiple areas obstructed from the cancer on the bowel) have resolved.
So now, with no impediments and no pain, Marin has been able to go back to eating a low-residue diet again. We are moving slowly and cautiously but trying to get as many calories in her as we possibly can.
It’s not a pain free Christmas. The side affects from this last week of HT have knocked Marin for a loop but at least it’s not the same horrific pain she has endured over the last two months. Some nausea and fatigue seem to be all she is experiencing.
Christmas eve or day (depending on if she sleeps through the eve) menu includes: Roasted chicken, mashed potatoes, mac-n-cheese and roasted (within an inch of it’s life) carrots. Maybe even a little bit of red wine. For dessert some Christmas cookies made by friends and just a pinch of an edible cannabis cookie for any more pain and nausea from the HT.
(Not an actual edible in our house. Though it does look good.)
If you have made it this far in the blog you are a true glutton for punishment.
Actually, you are a very dear person to take the time out of your life to check in on us. We share this info so others who may be going through a similar journey know that they are not alone. Also that there are a myriad of resources out there to help you through it.
We are plugging along, one day at a time. Sometimes it’s one minute at a time. But we are doing this together. Together with the help of so many friends and family members holding us up.
(Marin and her mother Donna at HT this last Thursday 12/22)
May this holiday season find you surrounded by those you love and who love you in return. When it all comes down to it, we only have one another, all the other stuff doesn’t count and the only thing you can “take with you” is the love you share.
Blessings on you all.
Jason & Marin
(Keeping in touch with her friends – natch)