Ever since losing Mike, I have known that I had to
write about his last days. I had to sit
down and re-live all those horrible final moments as I watched my best friend
slip away from me. There is so much
about those final days that I don’t ever want to think about again, and yet
something inside me is afraid to forget them.
It’s as though forgetting any moment involving Mike is another part of
losing him. And so, here I am, backed
into a corner. I have nowhere else to go
but to my seat in front of my laptop.
This project has been a millstone around my neck for too long. It is holding me back. It is something that is always dragging
around with me and I am exhausted from carrying it. I decided a week ago that this was going to
be the day. I have said that before, but
I am not laying my head on the pillow tonight without knowing its completion
exists. I did not have to work
today. I have nothing to distract me (though
I have been searching for the usual distractions for the past several
hours). I sit here at my kitchen table
with a lavender candle burning and classical radio (out of South Florida)
playing on my newly installed iHeartRadio app.
My belly is full. I am showered
and dressed. Clean laundry is drying on
the rack. There’s no turning back now….
I just took about an hour-long break and seem to
have lost the little bit of ambition I had.
Dammit. Suddenly I don’t feel as
confident again and have more fear than I did when I wrote those opening
paragraphs. I am back to looking for TV,
food, Facebook – any distractions I can find.
Maybe I can write my way out of my funk.
I am upset with myself that I won’t be able to
capture nearly the same number of details with the sharpness I would have had I
done this about two years ago when I should have. Like I stated before, some details may be
better off tossed into the sea of forgetfulness, yet still the idea of having
lost some memories stabs at my heart.
Just took another brief break. I was totally lacking concentration, so I
decided to get out of the house, put gas in my gar and pick up a few essentials
at Target – including an iced caramel macchiato at Starbucks.
Ugh. I just
don’t want to do this. I really
don’t. Yet, I know that if I don’t do it
tonight, I never will. I will feel like
a complete failure if I don’t get this done here and now. Great pressure to be under.
It’s time for my mind to travel back to my life over
three years ago. I am afraid to go
there, just as I am afraid to step back on Mass General’s oncology floor, the floor
where Mike spent six and a half weeks fighting for his life before finally
losing his battle. The last time I
shared any real details of those final hospital days was the day I asked
friends and family to join us in prayer for healing on the evening of Monday,
October 10, which also happened to be Columbus Day. On that day, I asked everyone to join in at
9PM, wherever they were, to pray for Mike’s healing which we’d been waiting
weeks for ever since his last chemo round ended nearly a month earlier. All that time, we waited and waited each day
for his body to start recovering and producing healthy cells, but it never did. Early each morning, blood would be drawn and
we’d wait several hours to hear the results.
Every day was the same: no new white blood cells, low platelets and low
red blood cells (which always required transfusions). Fevers were a constant part of each day, as
there was always some strain of some bacteria floating around his body and he
had no defenses to aid in the battle. It
looked like a hopeless situation that just taunted us each day. I refused to yield though. I had a dry-erase board that I sat upon the
shelf where I would write a daily encouraging scripture. With the small amount of concentration I
could muster, I would read healing scriptures from the Bible, or read
encouraging stories from my “Psalm 91” book.
I grasped at every straw of hope I could find. My friend, Rene, became my lifeline as she
would pray and encourage me almost daily.
She told me to expect healing and live as if God was going to grant Mike
health. Her words kept me sane, as more
and more I thought I was going to lose my mind.
On the morning of October 10, when one of the
doctors from Mike’s team would normally come in for their daily rounds, a
non-team physician – covering for the holiday – paid a visit to examine
Mike. He was in his usual weakened
state, and she had already seen that his labs from earlier that day remained terribly
low. She said she wanted another
bone-marrow biopsy (something the team planned to do again, but as yet
hadn’t). I think she wanted it done that
day, but knew that it couldn’t be done because of the holiday. She was a young woman, either Indian or
Middle Eastern, and she was fairly serious and expressionless. I remember her standing near the foot of
Mike’s bed and, with a serious expression on her face, leaning back against the
wall and looking up at the ceiling, as if for answers. I think we both knew what she was thinking,
but I didn’t want to hear it. She knew
the biopsy had to be done, and done soon, to once and for all determine what
was going on inside Mike’s marrow. Since
she knew the biopsy would have to wait until the following afternoon, the day
continued without any testing.
On Tuesday, the team confirmed that the biopsy would
be done that day. It was performed by
the same woman who performed the biopsy weeks earlier. She was a nurse practitioner with the team,
and one Mike knew from his years with the oncology team. He had said that she did a good job the last
time, so he was OK with her doing it again.
They pre-medicated Mike and, like last time, I waited down the hall in
the family lounge while they performed the procedure. I was a nervous wreck – even worse than the
time before, because I knew the enormity of this biopsy. As I sat down the hall, in my pajamas still,
I think, I tried praying and reading healing passages and doing anything I
could to somehow will a positive (which, in medical terms would be “negative”)
result. Eventually, when it was
completed, I went back down the hall to be with Mike. The poor thing had been so relentlessly poked
and prodded for weeks that it just killed me to see him going through this
again. At least the procedure was over,
and behind us. But now the hardest part
of waiting was ahead. It’s the waiting
that kills.
By that point, I was extremely worn down, worried
like I’d never been worried before. I
was hardly eating; I couldn’t believe the haggard reflection I saw every time I
looked in the mirror. I was so spent,
and yet I had to be strong and be everything I could for Mike. He needed every ounce of energy, faith and
hope I had, and I wasn’t going to let him down.
On the outside, I was the rock. I
jumped up every time Mike needed something – at four in the afternoon or four
in the morning. I was there,
always. I refused to leave him
alone. I gave him water and juice
whenever he thirsted; I tried to get him to eat any bit of food he’d
accept. I tried to make him comfortable
all the time, and inside I felt so alone.
I was trying so hard to be the strong one for Mike and yet I desperately
needed his strength and faith to hold me up.
I was fighting the most serious part of this eight-and-a-half-year
battle – the battle we fought together every step of the way – but I felt like
I was fighting it alone. He was so often
fighting nausea, muscle pains, fevers, fatigue, etc., that he was either
napping or not in a state where he was much for conversation. It was the loneliest time I had ever
experienced up until that point.
Wednesday morning came and the fear and uncertainty
inside me was at an all-time high. We
got word that we’d probably have the biopsy results in the early
afternoon. I don’t know how I managed to
keep my wits about me. I was terrified
of what was going to be said to us in the next few hours. Mike’s sister, MaryEllen (also a registered
nurse who once worked at the same hospital), stopped by on her lunch hour around
noon, and kept me company. Close to 1PM,
we got word from Mike’s nurse for that day, K, that Dr. A would be in
shortly to discuss the results. My heart
dropped. Everything was finally coming
to a head, it seemed, and I wasn’t ready.
Although her lunch hour was nearly over, MaryEllen stayed to be with us
for the results. K would also be
with us when the doctor came in. K
was nice, but was not one of our favorites.
She seemed too serious for Mike and I who liked to chat and joke with
the nurses, and sometimes she seemed to take too long getting Mike what he
needed. Finally, K and Dr. A
walked into the room. The tension was
unbelievable. I was sitting on the
couch, which doubled as my bed, next to MaryEllen. K sat down on the chair to the left of
Mike, while Dr. A pulled up a rolling chair and sat at the other side of
Mike. I immediately felt dread as he sat
down to be eye-level with my husband, and the sympathetic look on his face
almost spoke the words for him. It was
almost as if he didn’t want to have to say what he was going to say, so those
first few seconds of silence while he looked at Mike felt like an
eternity. He finally spoke, and when he
did, he told us that the biopsy results showed that the marrow was 80-percent
full of leukemic cells. There was
nothing more they could do. His body
couldn’t handle any more chemo, and what they already tried hadn’t worked. He said he was so sorry, and I knew he meant
it. I felt the life run out of my
body. I couldn’t believe what I was
hearing. The words we tried to run from
for so long where right there, in our ears, and there was nowhere left to run. I could hear MaryEllen sniffling next to me,
and when I looked at K, she was crying.
Yet Mike, ever the gentleman and worthy opponent with the best
sportsmanship, just extended his hand to Dr. A for a shake, and gently
thanked him for everything he’d done. I
think he even mustered a light smile. He
almost did it with a shrug, as if he was at the point where he knew everything
possible was done and that he conceded the fight. Dr. A stated that due to Mike’s
condition, it was probably unlikely that they’d be able to get him back
home. He also asked Mike what he wished,
to which Mike stated, “To not have to do anymore chemo.” At one point, K got up from her seat
next to Mike and motioned to me to switch places. Mike asked the doctor if he would now be in
“convalescence,” but I knew the word he meant to use was “hospice.” I told Dr. A that although I knew what
the biopsy results showed, that my God was a God of healing and that I was
going to believe for a miracle. I don’t
know whether he thought I was a woman of great faith, or just a panicked wife
in denial. Dr. A then began talking
about changing Mike’s medical directives to “do not resuscitate,” also known as
DNR. He also mentioned stopping the
daily blood and platelet transfusions, to which I was vehemently opposed. He said he understood my position, but that
there were other patients who would be in need of those units and that they
should be used for them. I knew what he
was saying, and I didn’t want to hear it.
I said, “So what if he has another septic shock episode like he did a
few weeks ago – do we just let it overtake him?” I didn’t care what the doctor
had told us about the biopsy, I was fighting for Mike now more than ever. I told them I didn’t want anything to stop. Dr. A remarked that if God was going to
heal Mike, He was going to do it whether Mike got a transfusion or not. Though I knew that was true, I didn’t want
any earthly forces to leave the door open for anything other than healing. At the conclusion of our conversation, Dr.
A asked if he could say a Hebrew prayer with us. We stood around Mike’s bed, and Dr. A
began saying a prayer he said they say with the kids Friday nights at
temple. He would say a few words in
Hebrew, after which we would repeat as best we could. I remember almost chuckling at one point
trying to say the words. Dr. A then
left, as did K, and then Mary Ellen walked out to call home to break the
devastating news to the family. When I
was alone with Mike, I was dying inside, but I still tried to keep him calm and
full of faith. As always, his family was
all he could think about. He just looked
up and shook his head back and forth and said, “The boys…” He was so worried about his two oldest nephews,
Anthony and Maxx, and how they would react and how they would be without
him. He was so concerned for those
two. All I could do was get his mind on healing. I told him that sometimes we have to have
nothing else but a miracle left for the miracle to come, to which he said,
“Well, we really need a miracle now.” I
think I prayed over him after that, but I was so numb I don’t remember if I
even did.
Within an hour or so, the entire family was
there. Mike’s parents, sisters, brother-in-law,
the oldest niece and two nephews – who had stayed away during the entire
hospitalization for fear of passing germs – were there. My brother also arrived. The youngest of the six nieces and nephews
were home, as Mike’s sister feared it would be too much for them. Everyone was overcome and in tears. Mike’s dad, always stoic and never one to
show much emotion could no longer hold back the tears. When he entered the room, he went to Mike and
tried to fight off tears saying, “Well, we really gave it a good fight, didn’t
we, pal?” It was awful. The hospital chaplain, who had been stopping by
on and off throughout the stay, was there and we had her lead a prayer. The room was never this crowded, save the
time Mike went into severe septic shock weeks earlier and had a frenzy of doctors
and nurses all around him trying to pull him through it. Over a dozen of us, eyes wet and red,
gathered around Mike’s bed, and all stood in a circle as the chaplain led us in
prayer for Mike. I also spoke, as I
tried again to grasp at the belief that Mike would be healed. I told everyone that Mike was once told, in
prayer, “Your healing will come through praise.” I told everyone that maybe this was the
moment God was talking about, and asked everyone to praise God that he would be
healed. I was pulling out all the
stops. I had nothing to lose, while
fearing losing everything. It was
surreal. In the nearly nine years that
Mike fought this disease, he was never once told there was nothing more that
could be done. There was never not a plan B. Suddenly, we were faced with no more options,
and nobody knew what to do with that, least of all me. I was always searching for the fix, the
solution, to this evil curse upon us. My
faith was the last thing I had, and even that didn’t seem like it was enough.
Over the next few hours, family took turns being
with Mike and talking with him, while the others gathered in the outer lounge
near the front reception area. Mike
asked for some time alone with his dad, and everyone gave them that space. They spent maybe a half hour or so together,
even asking for more time alone when one of the boys wanted to come back in. Jack later told me that it was the most
special 30 minutes (or whatever it turned out to be) of his life. He told me he apologized to Mike for pushing
him so hard in baseball for all those years, and Mike told him that he didn’t
push, that he loved baseball on his own.
Mike also told Jack that he wanted me to go on and be happy, and to have
the family I wanted. When I got Mike
alone again shortly after his talk with Jack, he told me a few of the things he
told his dad – where the services should be held,
and to make sure they got my grandparents up here for the services. I let him tell me these things, of course,
but I told him I was still believing for a miracle. I guess he was more accepting of the
situation than I was.
It was all so strange. I hated thinking that anyone going in that
room was talking to Mike as if it was the last conversation they might have. I know he told Brooke that she was like a
daughter to him. I know he had some
special time with the boys, who he worried about so much. When one of Mike’s favorite nurses, and our
friend, Kristina, came on shift at around 7PM, things went to the next
level. As some of us sat in the outer
lounge, the baseball playoffs on the TV but giving us barely a distraction, I
saw Kristina through the glass where she stood with another staff member by the
main reception desk. Whoever was talking
to Kristina pointed to the group of us, and when Kristina turned around to look
at us, I could see she was in tears, hysterical. She was just told the news. She immediately walked through the doors and
made a beeline for me, where I met her halfway and gave her a big hug. She cried and told me how sorry she was, and
as it turned out, I began consoling her.
I just looked at her and told her he was going to be OK. I was trying to convince her, and maybe
myself as well, that Mike was gonna pull through. A little while later, when I went back to the
room to check on Mike, there he was with Kristina, chatting like they always
did, though Mike was in a much weaker state than ever before. Kristina was cheerful and her eyes were
almost all cleared up, and it was evident she composed herself before going to
see him.
The rest of Wednesday night was a blur (especially
now that so much time has passed). Some
of the events I recall could have happened on that night or possibly even
Thursday night. Both nights, until
losing him, were just a fog for me. I
just know that family members were in and out, and that sick feeling in my
stomach was in high gear. We all took
turns going between Mike’s room and the outer lounge. I remember telling those sitting with me
about how Mike’s pitching arm was healed back in college, and how Rene was
healed of her lupus. I wanted them to
believe with me. I needed them to
believe with me. One small comic relief
event was when some young adult girl came by with a fake bird on her
shoulder. I don’t think I was there to
see it, but I remember John and a few of the girls talking about it and
laughing at how weird and ridiculous it was.
Meanwhile, the staff did their best to care for Mike and they were so
gentle and wonderful. But Mike was
getting weaker and weaker and it was killing me. It was at this time – or maybe even the night
before – that he couldn’t even stand up to pee without his blood pressure plummeting
and causing him to fall backwards onto the bed.
The last time that happened, he slammed his head against the tray table
and I had to summon the nurse and doctor to check his head. I don’t think Mike even knew it happened, as
it was as if he passed out. Thereafter,
they wanted him to pee in bed using the urinal. All along during his hospitalization, I was helping him with everything
– feeding him if he was too weak, helping him to the bathroom, etc.
I sprung into action to meet any of his needs. By this point though, he was becoming weaker
and more immobile, and I couldn’t handle it all on my own anymore. I seemed to have to call the nurses for more
and more assistance. And Mike seemed to
be calling for more and more help – pain medication, warm blankets, even
wanting to get up. I had them continue
the evening nebulizers which contained medication to ward off a possible fungal
or bacterial lung infections (one of the things they thought could have been
the cause of his fevers). The treatments
were so strong that I had to wear a TB mask if I was in the room. Mike was so tired and weak that sometimes he
would drift off when he was supposed to be holding the nebulizer and
breathing. In retrospect, I should have
just let him be….
Mike’s cousin, Thomas, who was in New York, called
on the room phone to talk to Mike. I
took the call and just tried to be as upbeat as I could. I tried to manage the influx of visitors, as
well as remain the commander of the caretaking operation whenever any nurse or
doctor would come in. I was still
operating under the belief that somehow, some way, Mike would recover, no
matter how hopeless things looked. And
even when I tried to remain positive and strong on the outside, I was dying
inside. I felt I was losing my grasp on
the entire situation, like Mike was slipping into a pit of quicksand and there
was nothing I could do about it. Once
everyone left on Wednesday night, I was alone, and it was the most alone I had
ever felt. The staff was there, but they
were busy with other patients. Most of
the time, I was alone in the room with Mike, and he was in various states of
awareness. He looked terrible. His face, which I don’t think had been shaven
since before getting admitted six week before, was overgrown with messy facial
hair. His clothes were hanging on
him. And his eyes were looking more and
more sunken, and jaundiced. He was also
starting to have more trouble breathing, and talking. At one point, they started him on the nasal
cannula of oxygen, as he seemed to be struggling for breath. Overnight, when I wasn’t waking up to his
every stir, and when I wasn’t able to find a few moments of sleep, I would be
praying. I would be repeatedly reading
healing scriptures. I would be listening
to healing CDs given to me by our friend Rene.
I would be reading our book, “Psalm 91” and reciting the psalm itself
over and over – demanding that it work.
I kept the dry-erase board on the shelf marked with the “Healing
Scripture of the Day.” I felt like I was
in a one-woman battle.
The next morning, the palliative care team, which
had been paying us visits over the past week or two, was back again. I sat on the couch/my bed, still in my
pajamas and feeling grimy from probably not even showering the day before. The team was trying to talk to me about
Mike’s comfort and pain/medication management.
I listened to everything they said, while continuing to express that I
still had hope. They were gentle with
me, but probably thought I was nuts.
Mike’s mom soon arrived, and I finally felt like I had a little
backup. Ellie’s brother and his daughter
arrived soon also, and while I was glad to see them, I now felt like I had to
entertain them. I’ll never forget Mike’s
hospitality, even in the state he was in, managing to find the strength to
greet them and ask his Uncle Joe how retirement was treating him. While they were all spending time together, I
took the opportunity to get out of the room for a little while and grab a
shower down the hall. Even though I knew
I had to take care of myself, I was just going through the motions. Throughout the day, different people came and
went, and Mike went in and out between sleep and conversation, struggling for
breath at times. I would call the nurse
to get him Dilaudid or Ativan as often as he could have it, to calm his anxiety
and give him rest. At some point, the
really nice social worker paid a visit.
Mike, being the funny man to the end, I think even quoted Henny
Youngman’s joke about the man who was given six months to live, but when he said
he couldn’t pay his bill, was given another six months by the doctor. Mike’s sister, MaryEllen, came up after work
and at one point in the late afternoon I broke down to her and Ellie, saying
how lonely the nights were and how hard they were for me. It was the first time I think I ever “asked”
for help. I was so worn down, physically
and emotionally. MaryEllen said she
would stay the night with me for support, so she went home and came back a
couple hours later with a change of clothes and toiletries. I was so thankful to have someone else with
me. My brother, John, and his girlfriend,
Denise, visited again that evening. As
always, Mike pulled himself together and summoned the strength to entertain
some conversation with those who came to see him. When they entered the room, Mike said to
John, “Hey, Strongman,” to which my brother chuckled. Mike was still Mike, despite the disease that
was rapidly overtaking his body. Again,
I left the room and spent time in the lounge with the others so they could talk
-- and to give myself a break from seeing Mike in that state, and also being
around people who I feared were saying their goodbyes.
Nights were the absolute worst, and the sicker Mike
got, the more alone I felt. The person
who was my best friend, and my best ally in this entire battle, was nowhere to
be found. He was so sick, tired and weak
that I felt like I was in the fight alone.
And worst of all, I couldn’t even discuss it with him. I couldn’t share my fears with him, for fear
of increasing his. I was scared
shitless, and yet in front of him I had to be brave and strong. There were times now that he would be nearly
gasping, and start to thrash his head and body from side to side in
distress. I would try to calm him and
ask him if he was having anxiety and needed some pain medication, to which he
would indicate the affirmative. I would
call the nurse in to give him anything that would calm him down.
To be continued....
