Because many people will want to know how she's doing, my sister and I have created this blog to keep our friends and family updated on my mom, Mary's, cancer treatment and recovery. Looking back, this is something I wish we had done at the beginning of this journey - but here we are... so let's begin.
Mom’s Cancer Journey (So Far)
This is Scott writing (Amy editing)
Five years ago this fall we got word that my mom had breast
cancer. After a few months, and many tests and doctor’s visits, our entire
family gathered at McGee Women’s Hospital in Pittsburgh for my mom’s surgery.
The surgery went alright. I remember sitting in the waiting
room feeling like this wasn’t a cancer surgery center as much as it was a
cancer service center. Each of the day’s surgeries was posted on electronic
boards around the floor with the patient’s status, location and stage of
surgery. It was like an airport, but instead of arrivals and departures, it was
pre- and post-op listings. “Attention hospital guests, now arriving in Room
221, Mavis Merica after a successful lumpectomy.”
A lot of women were having a lot of surgical procedures.
One thing that I’ve learned in this process, breast cancer
is common. And more often, cancer is even more common. Everyone has either had
it or had someone close to them affected by it. Some of us get the joy of
having it and being affected by it over and over and over.
We should all be in our best shape possible… when cancer
arrives, being healthy gives you the best odds of defeating it or surviving as
long as possible in the best state possible. Cancer is indiscriminate – it
doesn’t care if you’re young, old, in shape or out of shape. It happens when it
happens and you have to deal with it. Other factors then play into your
recoveries and treatments… how strong is your body? Can you heal quickly from a
major surgery, or a minor one? Can you hold up against the intensity of a
heavy-duty drug or will you need to take the easy road with a longer treatment
period? And, in some ways most
importantly, are you mentally strong enough to handle hard truth, difficult
news and the inevitable difficult questions.
After the initial surgery, mom’s health history
(particularly her diabetes) made the recovery process longer than her doctors
expected. Finding cancer cells in her
lymph nodes was the rotten cherry on top of everything.
She had to go through chemo, and that was hard. A few days
after each treatment, mom would get very sick. Her hair fell out. When it was
done, and a PET scan showed no cancer we were happy for her. She had made it
through.
But she had a long road.
She began a series of anti-cancer hormone therapy (standard
for women in her position). Some of those drugs made her feel not-so-good. Some
of them did nothing. But about a year after chemo was over, a spot showed up on
her hip, not big, not aggressive and mom did not feel it at all. Because of
that, they changed up her drugs which lead to some oral/teeth issues – somewhat
common in post-chemo cancer treatment.
One thing that a lot of younger folk don’t realize (I did not) is that Medicare doesn’t
cover Dental. And with all of the changes in retirement plans to save costs,
Dental has been removed from many Senior’s healthcare plans. So when my mom
began developing teeth and gum issues due to the treatments, she had to pay for
all of her dental care out of pocket. Even
though it was directly caused by her cancer drugs. So… they do what they
have always done. When you don’t have a lot of money you pay for the most basic
- cover the immediate need and worry about the future later.
And then the teeth infections continued and her pain got
worse and the dentist didn’t talk to or make the connection to the oncologist
(we will never really know 100% how it went down, and that’s frustrating). And
so, without dental insurance, the most economical thing for mom to do was to
have her teeth removed. ALL OF THEM.
Painful.
Even more painful when we learned that the anti-cancer drug
mom was on causes jawbone issues, and removing her teeth caused her jawbone, already
in rough shape from the cancer meds, to begin to deteriorate and cut up through
her gums.
And the Dentist blamed my mom for not telling him about one
of the treatments she was receiving that could cause problems with the jawbone.
Why didn’t he have any responsibility to check her medical information?
Then, the gums took longer to heal (like the cancer surgery);
the dentist made my folks pay up front for false teeth and then dragged his
heels on getting them made for months.
Have I mentioned yet that if I saw this guy on the street I would punch
him in the face?
They don’t fit. After nearly 6 months of not having teeth,
the false teeth that took so long to make because he wanted “to get them right”
don’t fit. PUNCH PUNCH PUNCH.
Butler Family Dental. Avoid them at all costs. They have
played a part in deteriorating my mom’s quality of life.
Today, Mom weighs less than I did in high school. Without a
good set of teeth, it’s been hard for her to eat and so she has lost a lot of
weight.
Which brings me to this Easter.
I went to visit my folks for Easter because Mom was having a
hard time being sick. She had gotten the flu that was going around and because
a recent PET scan showed another small spot, this time on her back, her
oncologist decided to try a new anti-cancer/hormone drug. We had a suspicion that mom’s sickness was both
the flu and related to that pill.
Mom took one of the pills on Saturday afternoon and by
Saturday evening before Easter she was the sickest, scariest I had ever seen.
Tired, disoriented, confused, in pain and just not able to focus. It was pretty scary. One good thing, that
made her sleep.
Since her Chemo treatments, mom has not been able to sleep
normally. Up and down, hot and cold. Her sleep habits have been so erratic that
she has taken to sleeping on the couch rather than in their bed.
But now, she slept, all night and slept in on Easter Sunday.
So that morning she did not take a pill and by the time we went to brunch she had
gotten remarkably better. By the end of the day she was totally back to what
had been normal since she had her teeth pulled.
I left feeling that we had determined the medicine wasn’t
good, and things would be better for a while.
But it didn’t take very long for things to get worse. In an
attempt to help herself, mom not only stopped taking her cancer medicine, she
stopped taking all of her medicine for a week or so. And then she disappeared
from Facebook and emails. Calls with mom were awkward and a little odd, she
didn’t seem to be very responsive and everything was “Fine.” She would ask me
multiple times how I was doing. After my
sister Amy told me mom had told her about not taking her pills, I called mom
after one of her important doctor’s appointments.
She could not remember if she had gone to the doctor or not.
This was the first indication we had that something was wrong. So Amy made
plans to visit mom the following weekend. Each time Amy called, mom had forgotten that she was coming
to visit. Then when Amy arrived, not only had mom forgotten she was coming, she
never told our Dad. A rapidly escalating series of events unfolded after Amy
arrived that convinced my Dad what Amy and I knew already – Mom had lost her
short term memory which gave all of us a startling amount of fear and
speculation as to what had happened. Brain cancer, Dementia, Stroke…???
Mom had an appointment on Monday, May 4. Dad called off his
work for the week and he and Amy forced mom to go see her oncologist. Mom did
not want to go. They arrived and Mom’s cancer doctor was waiting for them. We
quickly learned that Mom had missed two appointments she told us she had gone
to, and most discouraging – her most recent CT scan showed that she had cancer
diffused throughout her abdomen. Based on her mental condition, mom was
admitted to Butler Memorial Hospital for tests and observation.
A series of tests quickly concluded that mom’s brain was
fine and there was no cancer or infection, no blood clots, or issues in her
brain to cause concern. For the most part her blood work was relatively normal –
the only thing that was abnormal was slightly low Vitamin B levels. By this time, Mom was complaining about
stomach pain and so they began a pain management plan with lots of fluids.
Slowly mom’s mental awareness began to come back.
Amy and Dad stayed with mom till visiting hours were over on
Monday, then during the day on Tuesday and Wednesday. I had obligations that
kept me in Detroit through Wednesday night when I drove through the night to go
with them to the hospital Thursday morning. By Wednesday mom was sounding back
to herself before going to the hospital. An X-Ray of mom’s abdomen showed that
her stomach pain was due to the strands of cancer resting on the outside of her
stomach and small intestine.
So what is diffuse abdominal cancer? On Thursday, my mom’s
doctor explained it in detail to us – the cancer mom has in her abdomen is not
in one specific organ, but rather in the lining of the abdomen – the membrane/endometrium.
Like a cotton ball that’s pulled apart, the cancer is stranding through the
abdomen. The greatest concern with this type of cancer is that the strands will
eventually cause a blockage. They held mom in the hospital until she was able
to keep her food down and have a successful bowel movement. Both of those
happened on Thursday and by Friday morning she was doing really well.
The drive home for mom was rough, she got sick on the way and
then again at home. For a minute, we were worried that she was drifting back into
the pre-hospital state. But then we made sure she was drinking water, taking
her medications and eating as much as she could. Since then she’s been getting
better. The pain medicine is working, the anti-nausea medicine is working and
mom is getting good rest.
NOW
Here is where we are now. We have accepted that mom’s cancer
is serious. We all think that when the doctor called her with the news about
the cancer returning, mom “checked out.” She got scared and sort of gave up on
remembering, on trying. Now that she has learned that we’re all here for her
and that she can control the pain and can eat, if she works at it, and that she
has medicine for the nausea, she is getting much better. We’ve given her a firm
schedule of all of her medications, Dad is officially retiring so that he can
take her to every appointment and be at home full time to make sure she’s
staying hydrated, eating well, and helping her when she needs it.
On Monday we had a scared, pessimistic outlook. Today we are
more optimistic. We know that there are still more difficult conversations to
have, more upsetting times ahead, and the inevitable to plan for. But we are
positive that we have made it through a rough moment, and have learned a lot
about what mom needs for now.
Amy and I will be visiting more often, and checking in with
her every day. Dad is taking more responsibility for mom’s care and their
combined welfare.
And a lot of people have offered help, have reached out,
have been incredibly supportive and have offered unexpected prayer and hope.
For that we are very thankful. Mom needs to know you are out there. If you live
nearby, call and stop by. Give her a call, reach out to say hello, be in touch
with her when you can. And perhaps Amy or I will be there too – we’ll be there
more often than we have in the past. And we love each and every one of you who
cares about us and my Mom. Keep praying, keep hoping, and please keep reaching
out.
Scott, Amy, Speed & Mary