I have decided not to tell people the names we pick. Not that at this point we've picked any. Or, I have, and Jason shuts down everything I say. I hope we don't call the kid, well, Kid. I don't want people cringing at my favourite names.
We do have middle names.
My friend Braz is going though a pretty major journey. I thought it would be nice to honour him. We've decided if Ziggy is a boy we are giving him the middle name Braz. Since Braz is not really a feminine name, I asked him if he had any girl names he would like to use. He chose Charlotte.
This is what he said about the name, and why he chose it:
"Wow. That is so powerful and a huge honour. Thank you to you and
J for the honour. My favourite girl's name is Charlotte, after my
Great Aunt Lottie who was like my mother figure from my birth until she
died when I was ten. She filled me with love, taught me to garden and
bake and cook. She fully loved me as I was. She didn't have a
competent husband so she became an entrepreneur in the 1950s . She was
an expert baker and baked and cooked for wealthy families around the
town. She made enough to live off. She was a big woman, strong and
capable and quiet."
Pretty good legacy to continue, no?
Here is just a small part about why I wanted to honour Braz, and continue his name. This is something wrote on facebook to keep his friends and family updated. I felt not just updated, but feel blessed to be his friend. I knew he was an amazing person before this. This attitude is not new. I want to share his words. (with permission) This is a lot of back ground, and I've bolded and italicized some bits that I find important.
"Not the Journey I Would Have Chosen, But the Journey I Am On.
16 July 2013 at 18:41
Reflections on the events of the last few days.
It
has been a difficult few days. I’ve been in my third week following my
first chemo treatment. I had been exhausted for most of the three
weeks to the point where I could do very little other than sleep,
shuffle about my condo, slowly eat the meals that my loved ones prepared
for me, listen to music, and do a very small amount of composing. I
have only been able to sleep for a couple of hours at a time due to
chest and back pain and breathing challenges. In the second week after
chemo I started having what they call “black, tarry stool”. That is a
sign of internal bleeding. I put off going to emerg because I kept
thinking it would clear up and kept imagining I was feeling better. But
I started having severe sweats and my fever would spike to 38.8 over a
couple of days and I finally agreed to go to emerg.
On
Sunday, B, my ex-partner and R, my girlfriend, and I went to
M. Health. We explained that I had advanced sarcoma, was
receiving chemo, and had black stool and fever and sweats. I really
felt that I was there to get tested for infection and hadn’t been
thinking about the internal bleeding because my stool had appeared to
return to normal. Given my situation, the emerg staff put us in a
small, private room where we would spend the next 13 hours. They took
lots of blood in different shapes and sizes of containers to test for
various possible infections.
The first doc we encountered
decided to start intravenous antibiotics as a precaution. However, he
also had a nurse deliver three advil, a gravol IV bag and a morphine IV
bag. Chemo patients are not supposed to take advil, especially those
with symptoms of internal bleeding. I declined the advil, gravol and
morphine and we got the IV antibiotics started. They also gave me an IV
bag of saline.
The room that we were in was the same
room that I was put in a year and a half ago, when I was taken to emerg
with a collapsed lung, pneumonia, pleural empyema, and a blood
infection. I almost died in that room last year when the docs just gave
me morphine and told me to sleep. I woke unable to breathe and sat
upright and gasped until I got some air. I leaned forward and found I
was able to breathe a bit better. I sat in that room for two days while
we waited for a bed in the hospital. I sat up at the bedside, leaning
on the hospital table. I didn’t sleep. When I was transferred to a
regular bed, they still didn’t know what to make of my situation and
continued to give me morphine and added antibiotics. I continued to sit
up and lean on the table day after day. I got a blanket brought from
home and folded it into a sort of face pillow atop the table. I had a
crevice for my nose and would lay forward with my face on the blanket
and doze for short periods. I could barely eat and was getting
delirious and was entirely exhausted.
On the fifth day, I
was sent for yet another CT Scan – they had already done several – and a
doc from the ICU, Dr. R, saw me and followed me back to my room
and had me transferred immediately to the ICU. They puzzled over what
to do until a thoracic surgeon, Dr. L, was asked to look at me. He
ordered a surgical tray and right there at my bedside cut a hole into my
chest to insert a garden hose-thick drain tube. He couldn’t get the
tube through the sticky fluid in my chest wall, so he pushed his
rubber-gloved finger into my chest and wiggled it around to break up the
obstacle. Then he pushed the drain tube in. The team of docs decided
to inject my chest with a chemical cocktail which would loosen up
everything in my chest. They injected me then sealed the drain tube. I
laid on my side in excruciating pain for one hour. It felt like my
entire chest cavity was a bubbling cauldron. My stepson, Rb, came to
visit right during that hour and all I could say to him was, “this isn’t
the best time for a visit”. When the hour was up, they unsealed the
tube and attached it to a drain box. They also put two more, smaller,
tubes into my back. Over the next weeks, more than five litres of fluid
drained out of my chest. I could breathe again and started a very slow
recovery.
It was strange being back in that same
emergency room. With the same side table. I felt like I was visiting
with an old war buddy. I also had a lot of emotions that came with the
memories.
We somehow got another doc assigned to us and
he came in to discuss the blood tests. Nothing had shown up in terms
of infection but he was concerned about my hemoglobin levels. I had had
a test the week before, and even though the black stool had stopped, my
hemoglobin had dropped notably in just a few days. He was concerned
about internal bleeding and had a phone conversation with a doc from
P M. The local doc was leaning towards sending me there
for emergency care but they decided together to give me a unit of blood
and send me home.
It took them hours to get the blood
match done and to start the transfusion. Having confirmation that I was
bleeding internally was a hard thing to hear, even though the black
stool and severe exhaustion had suggested it. While they started the
transfusion I became very quiet and serious as my memory was dragged
back to my teens. When I was 15 years old I began having stomach
troubles. When I was 17 I began suffering severe fatigue, lethargy,
exhaustion. Blood tests showed low hemoglobin and eventually I fainted
in the middle of my family doc’s waiting room while there for yet
another checkup. That got some serious attention and I was taken by
ambulance to C. Memorial hospital. They found my blood levels
life-threateningly low and began the first of what would be many
transfusions. This was in the 1980s at the height of what would become
the Canadian blood scandal. It is no minor miracle that I escaped my
many transfusions without AIDS or Hepatitis.
It took
several years of testing in K, W, H and
eventually, T, before they discovered that I had two haemangioma,
benign tumours made up of densely packed blood vessels. One was in my
abdomen and one was in my throat. Over those years, my life became a
strange limbo. I dropped out of school, was too tired to hold down a
job, and spent a whole lot of time living in hospitals surrounded by
elderly people and the very sick and dying. It was a time of life when
my friends and school mates where “at their peak” physically and doing
all the things that teens do. My life was limited to a small circle of
friends, reading, listening to music, writing, and playing music. I
learned a lot from my time with the sick and dying, primarily to never
take life for granted and to make sure I lived a life that I would not
regret. I saw the differences in how people die – how those who were at
peace with the life they had lived died more peacefully.
Also
over those years I had many, many blood transfusions. It was a
difficult time. I didn’t know what was wrong with me. I wasn’t doing
very much that was meaningful with my life. I wasn’t getting better. I
was tested for every known disease before they discovered the
haemangioma. I eventually had two major surgeries to remove the
tumours. Those surgeries and the impacts on my life are another story
entirely.
Laying in the emerg bed last Sunday, watching
the blood slowly creep up the plastic tube toward my arm, I had all of
those memories and emotions come back into my body. The blood took a
couple of hours and then they kept me longer because I had a fever.
They gave me Tylenol and another bag of saline before they let me go.
B had gone home to sleep but came back to pick up R and I. It
was 3am Monday when we got home. We’d been at the hospital for 13
hours, but it felt like a lifetime.
I slept the best I
could that night. Spent a couple of hours on the couch then a few hours
in bed, propped up on pillows. My mind had sort of gone blank and my
body felt distant and shut down. On Monday I felt quite emotional and
spoke with B and R about my memories and feelings. Later in the
day, my sisters, K and J and my niece, Kt, came to see me
and we talked as well. I had a lot of tears that day. Tears for my
teenage self in his fear and isolation. Tears for myself of last year
for the life and death struggle he endured. Tears for my family’s pain
and hardship. Tears because I haven’t been able to do as much for my
kids this last year as I would like and tears over the unknown about my
cancer and the internal bleeding.
We had good chats and
everyone was supportive and loving and I am deeply grateful for that. I
am blessed with the people who are caring for me in so many ways. I
was exhausted at the end of the day and slept the best I could.
Today,
Tuesday, we had to get up early for an appointment with my oncologist,
Dr. G., downtown. This appointment was the
check up prior to my next chemo treatment. I was a bit anxious because I
was going to get an x-ray that would tell us whether there was a sign
that the chemo was working or not. We arrived early, waiting a long
time for the blood work to be done, then got the x-ray. All the while
two young researchers were recruiting me for a new talk therapy program
for cancer patients that they were involved in developing. Eventually,
we saw Dr. G. and she told me the two things that I did not want to
hear. First, the x-ray did not look good. She didn’t see any clearing
and in fact my chest was more “full” than last time. She doesn’t know
how much is fluid and how much is tumours, but the bottom line was that
she didn’t see an obvious indication that the chemo had affected the
cancer in a positive way.
The second thing that she told
me was that the diagnosis that had been done previously was not entirely
accurate. They had previously told me that I had one of two kinds of
sarcoma – the kind that tended to respond well to chemo. I was told
then, that I was lucky. Today they corrected that diagnosis. Further
testing on the sample showed that I have the other kind of sarcoma. The
unlucky kind. The kind that tends not to respond to chemo.
B,
R, K, and I all had some questions. But I felt a heavy weight
of disappointment drop onto me. Everything that I have been enduring
has been in the hope that the chemo would help reduce the cancer. We
still need to have a CT Scan to properly assess the status of the cancer
and to see where the fluid is and how much there is. But even the fact
that so much fluid has accumulated in the last two weeks is not a good
sign.
Dr. G wants to try a second round of the same
chemo drug. If that doesn’t show any results, she has one other drug to
try. She didn’t want to give me odds because she said that it works on
some people and doesn’t on others. If it works, your odds are 100%.
We can surmise what the odds are if it doesn’t work.
She
is concerned about the bleeding and is going to give me two units of
blood prior to the chemo treatment this Thursday. They are also going
to do another ultrasound-guided chest drain on Thursday. They may also
attempt to insert some substance into my chest to prevent the fluid from
building up again. It will be a long, long day at the hospital.
This
has been a hard week. The one positive is that all of the doctors who
have seen me say that they are amazed at “how well I’m doing considering
what the x-ray shows”. I’ve been told that for months now. My body is
managing this heavy disease burden as well as possible. I am glad that
I have lived well, eaten well, exercised, cared for myself. But I know
that there are limits. The flipside of the compliment is that the
expectation is that I would not be doing well and therefore that I don’t
have much more room for the cancer to spread before I will not be doing
“well”.
I don’t know what to think or feel right now.
The scope of my health journey is almost too vast to process. There are
many biographical, emotional, and physical layers to what I’m
experiencing.
I can only come back to what my core values are. And
they are to deal with the situation with as much courage and dignity as I
can. To be open to humour, although that has been a big challenge this
week. To be honest with everyone about what is happening. To keep
taking the best care of myself that I can. To hold onto hope for
healing while also being truthful with myself about my situation. There
are big things to be worried about now: the spread of the cancer and
the internal bleeding. But we are going to try round two of this chemo
medicine and if that doesn’t work and my body is still holding up, we’ll
try the other drug. If that doesn’t work we will worry about it then.
I
can’t help but think about dying. About when I might die and how I
might die. But I’m not dwelling on that. It is part of what I am
experiencing but it is not happening right now. Right now I am sitting
on my couch, breathing in oxygen from my loyal oxygen concentrator. My
sister is resting in the other room. R is painting. B is out
looking for a new couch for me. I continue to be very blessed.
I
am also blessed with many, many family members and friends and
acquaintances, and even total strangers, who are sending me good wishes,
healing thoughts and energies, and prayers. I take great comfort in
that and I appreciate it with all of my heart.
As my
sister, K, has taught me to say to myself, although I feel useless
sometimes because there is little that I can contribute right now,
although I am exhausted all of the time, although I am full of cancer
and bleeding inside, I love and accept myself fully. I think that is
the best we can do whatever circumstances we find ourselves in.
I
encourage you to appreciate whatever good is happening in your life
right now. Even something as simple as taking in a nice, full breath.
Or the feeling of laying down flat on your bed. Or the sensation of
walking. Whatever you are facing, I encourage you to love and accept
yourself fully.
And I love you. "
There are of course, financial worries. Braz has an album, and you can download it, or order a CD. Buy it for the music. It's pretty damn great, so it's a win win!!
http://herecomethefirehorses.com/
