Monday, June 3, 2019
Set List: Soulshine (Allman Brothers), Wish You Were Here
(Pink Floyd)
Week 3 started off seemingly “normal”. Had a radiation
treatment and afterwards met with the radiation team, doctor, nurse, and
nutritionist. Note the set list above, the music theme has become less of a focus
as I’m pretty comfortable now with the treatment and other more critical themes
are developing so I’ll refrain from explaining the glitch of the day around the
tunes.
The team informed me I had lost 2 pounds and I needed to
keep the weight up. I explained I’m following the plan so maybe the plan needs
some tweaking. I’m eating 2,500 calories a day and losing so now they want me
to take in 3,000 calories per day. We’re going to start ordering supplies for
the feeding tube to supplement my eating.
I asked each about CBD products and I sensed I touched a
very sensitive topic. It is against hospital policy to discuss the effects of
CBD on cancer patients because there is not enough data but more importantly
because of CBD’s presence in the “grey zone” under federal law.
I explained I wasn’t looking to get high, just inquiring
about possible appetite enhancement. I agreed I’d take a wait and see approach
before pursuing further. When the doctor got word of my sniffing around CBD, he
entered the room and said, “There are 2 things you can’t do, start smoking, and
you can’t miss any treatments.”
I assured him neither of those would be happening. They encouraged
me to be active and to help stay in a better mental state so I went home,
bought a new lawnmower and mowed the front lawn. It felt great! Not only did I
feel invigorated to be active, I think it enhanced my appetite. I actually ate
3,000 calories to see what that was like, it was challenging. Don’t think I can
do that every day.
Tuesday, June 4, 2019
Set List: Candy Man, Hey Little One
Just another routine day, radiation treatment and a blood
draw to check numbers for chemo tomorrow. So routine was this day in fact that
I came home and finished mowing the yard and enjoyed the outstanding weather.
It really almost felt like a day off today.
I figured with my appetite still doing well, I would take
another shot at a 3,000 calorie day. By the afternoon I was feeling well enough
to give Burger King another shot. I looked up their menu and discovered the
Whopper with cheese would be a great idea for the calorie and protein intake,
but 2 would be twice as good. That’s right, for supper on Tuesday night I ate 2
Whoppers with cheese for a total of 1580 calories and 64 grams of protein. Don’t
think I can do that every day.
Wednesday, June 5,
2019
Set List: House of the Rising Sun
Full day today. Meet with the chemo doctor for the first
time since I started treatment, radiation, and chemo. The previous day’s blood
draw was fine so chemo was a go. We discussed identical symptoms and topics
that I had had on Monday with the radiation team. This should have been a good
thing but instead became a huge eye-opener for inconsistent information from
the health care professionals.
On the topic of
acid-reflux
Radiation Team: Keep taking Zantac, as needed.
Chemo Doctor: Stop taking Zantac, inhibits platelet count,
begin taking omeprazole
On more calories
Radiation Team: Start using feeding tube when supplies come
in.
Chemo Doctor: Good to have the tube but try not to use it.
Try these other supplements instead.
Pain relief
Radiation Team: Let’s see how things develop before we move
to any heavy duty drugs.
Chemo Doctor: Let’s get started immediately taking gabapentin.
Ease into it over the next 3 nights, then morning and night then 3 times per
day. In a week you’re going to need it and I want you to be out in front of it.
I moved on to chemo and met with the nutritionist again to
firm up the feeding tube supplies and shared my concern over the inconsistency
of advice. She was none too happy to know about the information I received regarding
the feeding tube and shared she gets very frustrated when people don’t stay in
their lane. I share her sentiment.
While receiving chemo I got a call from the chemo nurse in
charge who asked me about changing the Rx for a “miracle mouthwash” his doctor
had just called for me. He said there was an easier way to do it with a combination
of Rx and over the counter meds and it would be much cheaper. Would I be OK
with that? I told him I would be if that was the recommendation. He shared there
were emails “flying back and forth” over this all day and he figured he would
just find out what I wanted to do to end the discussion. My confidence is not
as high as I would like it to be.
By about 3pm I was back home. The week rocketed downhill
from there.
Around 5 pm I started feeling chills. My wife got home and
we went over the new sets of prescriptions I was given and she headed out to
the pharmacy. By the time she returned I had a fever, we began monitoring it. The
protocol I was told to follow was if the temp gets higher than 101.5, I need to
go to an ER. By 8:30pm it was 101.5 and we headed to the nearest ER.
I was seen immediately and after a few hours I was admitted to
the hospital. Although the fever was likely due to the chemo treatment the actual
source could be anything so the battery of tests and rule-outs began. By 1am
was in a room in the cardiac unit since my vitals were suspect. I had a couple
of IVs going, antibiotics and fluids, and blood cultures were underway.
Thursday, June 6,
2019
It had been a scary and discouraging night. The morning brought
no answers as to what had caused the fever, which now was very much under
control (down to 99 and dropping). I actually awoke feeling much better and a hungry
to boot. For the next couple of hours we had to unscramble all of the competing
healthcare professionals’ angles on what to do. My biggest concern was
medications affecting platelet counts and the admitting doctor had stopped all
of my “home” meds so now my chemo cycle drugs for days 2 and 3 are not
available, I have no idea what harm that may cause.
I began calling my oncology team members to let them know
what was going on and was emphatic that they get involved in coordinating care
with this hospital. For the most part things worked out and I was given all of the
meds I required but once again I can only imagine what happens to patients who
assume the doctors in charge at any given time have all of the knowledge they
need. They don’t, plain and simple. Another concern for me was that the “doctor
in charge” for me this day was a nurse-practitioner. Although she was
cooperative with my oncology team and deferred to their requests, I later found
out she also did not return the calls from primary care physician who called
twice to find out about my situation. I did see her later in the day ad she
said I needed to stay another night until they got some results, positive or
negative, from the blood cultures.
The rest of the day I spent in bed, eating my meals, and
being flooded with fluids and antibiotics.
Friday, June 7, 2019
Another morning of waiting to hear some news. The 24-hour mark
had passed and the blood cultures were negative so far. Spent another day
observing the operations of the cardiac floor and inner workings of the
hospital staff, noting all kinds of HIPAA related mistakes and broken
protocols, (mostly involving my situation as a chemo patient and the harm I
could cause the staff who entered my room). Can’t own it though, too much going
on for me.
Saw the new “doctor in charge” or Hospitalist for today,
another nurse-practitioner. She said they were continuing to look at blood
tests, etc. and we’ll see how things go. Also, she was making a referral to an infectious
disease doctor since they’re running out of ideas.
By the afternoon I was visited by the infectious disease
doctor. Nice guy, shared that today was his birthday and that his daughter was
down in the ER being fast-tracked for some injury she had but she would be fine.
I jokingly asked if his last name was Sullivan. We laughed.
He proceeded to explain that after looking at everything
about my case and history, he was fairly certain that this incident was
directly related to chemo and sometimes it causes an “Undifferentiated Fever”
and we may never know the exact cause. He felt that it was wise to monitor the
blood cultures further but that there was no reason for me to stay in the
hospital any longer and was recommending I be released that afternoon. I would
go home with some antibiotics and I might get a call back stating the cultures
were showing something but unlikely at this point.
About a hour later, the nurse practitioner returned to
inform me that she had spoken with the doctor but she now had concerns about a
high heart rate and wanted to do more testing that would take another day. Although
my vital signs had been outstanding for two days, it seems when I got out of
bed to use the bathroom, my heart rate “spiked”. I initially accepted her explanation but had a
feeling that this was moving things in a somewhat unnecessary direction in
terms of the immediate picture.
I called my primary care physician and told him what was
going on. He sighed and said he agreed, it seems that she is moving into
territory that was not necessary tonight. He said he would call her but if I
really wanted to leave I would probably need to sign an AMA form.
“Do you know what that is?” he asked.
I replied, “I assume it is a release of liability form for
the hospital.”
“It is, ‘Against Medical Advice’.”
He called the nurse’s station and eventually spoke with the
nurse-practitioner. He called me back and said he had a good conversation, but she
would not agree to release me without an AMA form. Otherwise I was there for
another night.
So I have 2 doctors who think I can go home, but a
nurse-practitioner on a mission overruling them. I think this officially gets
filed under the medical world has turned upside down.
This was not an easy decision. In the end, I decided I would
stay one more night but if nothing was found, I would invoke the AMA tomorrow
to get out. My biggest concern was, if I did sign an AMA, would I still get the
antibiotics to take home? No straight answer to that question was ever
resolved. I’m a little bitter to have been put in this position. I’ll be
processing it for a while I’m sure.
My nurse that night was quite helpful, I fell she intimated
that I should sign the AMA and go home but obviously couldn’t come out and say
it. She was my age, knew both doctors involved very well and was confident in
their assessments. Completely aside from this situation, she also shared with
my wife and me that she understood our struggle with the decision and that “when
I see a couple like you two, it renews my faith in love.” Even through this I
know I still the luckiest man alive.
My wife stayed with me the first 2 nights. Tonight we agreed
she should go home and get a good night’s sleep because I would be home on Saturday.
I’d like to say Friday night was uneventful, but it was not.
I could hear some very inappropriate conversations amongst the overnight staff that
would make HR cringe. Later, an elderly gentlemen in a room down the hall passed
away. I was awakened to a commotion around 3:30am, lots of “Code Blue” alerts
and eventually heard the words “flat lined” in a phone call from the attending physician
to a family member, time of death, 4:02am. It was a sad night.
Saturday, June 8,
2019
Another morning of negative results for everything including
the new tests for heart issues, I’m going home one way or another. The Hospitalist
today is a doctor, “very reasonable” according to m nurse Joe, a former
residential contractor who I had a lot in common with. Joe did his best to steer
the doctor to my case as soon as he could.
The doctor came in to talk to me around 10am and told me he
agreed with the infectious disease doctor from yesterday, this was an incident
related to chemo, I did not have a heart problem and I could go home. “Going
home” took about 2 hours to happen but nurse Joe finally came in around 12:30
and said, “Your hostage crisis is over! You can get out of here!”
We were home around 1 and ready to end this exhausting week.
I had lunch while my wife filled more prescriptions and ran a few errands. I
would wait until she returned to take a shower, intending to chill in the
family room until she returned.
So what about this post being entitled, “911, What’s Your
Emergency?”? Yeah, there were plenty of emergencies and crises to deal with
throughout the week, was that it? Um, no, it wasn’t. You see, after all of the
twists and turns the universe sent our way this week, it apparently wasn’t challenging
enough.
As I settled into my nice comfortable basement, opened the
windows to let in the fresh air, I noticed a car stopping across the street. As
I watched, the driver, an elderly man, opened the driver’s door, and I could
hear screaming from the passenger. The driver reached in and tried to pull the
passenger out of the car onto the road, while cars were passing. I knew then
there was a 911 call in my future. As I continued to watch, the man shut the
door and slowly walked to the neighbor’s door and rang the bell. “Please answer
door” I begged silently. No one answered.
The man looked across the street and I knew he was headed my
way. I tried to intercede from the window and yelled out to ask him what he
needed. He was clearly disoriented, a little hard of hearing and just out
sorts. He came up the driveway and I was able to get his attention to come to
the window. I again asked what he needed and he said, “My 24 year-old grandson
has autism. He had a seizure and started attacking me while I was driving, I
had to pull over, can you call 911?”
“Of course I can,” I replied. I explained that I know he had
no way of knowing this but I had just gotten out of the hospital, was a cancer
patient and there was no way I could come in contact with people right now so I
would help him by phone, but I would be staying in the house. I further told
him I was very familiar with adults with disabilities and we would get through
this together. We got the response needed and within a few minutes the town’s emergency
responders were on the scene diffusing the situation.
That’s about the time my wife was retuning to the house.
That’s right, her worst nightmare. She left me home for 15 minutes and the town’s
emergency responders were on the scene. I can’t imagine what she must have been
thinking as she approached. She came into the house and all I could say was, we
live inside a Lifetime Channel movie
I missed 2 radiation treatments this week so I don’t know
how to measure the treatment weeks at this point. I know there are many
challenges to come still, hopefully week 4 will be a better than this week.
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