I had been planning on continuing this blog
chronologically, but events over the past 11 months have decided me to just
start writing down things as they happen, and including anecdotes from time
past as I remember them. This first
installment is going to pretty difficult for me to write, I am hoping it will
be therapeutic for me and maybe for some others in my family, so please bear
with me as I am not an author in any way shape or form.
In Aug. 2013 our family Doctor sent Rae to a
cardiologist in Olympia WA because he was unable to control her blood pressure
with the drugs he was providing. The
cardiologist in an abundance of caution ordered several different types of
tests to attempt to determine if there was anything he could do differently to
control her BP. One of the tests he
ordered was and Aortic ultra-sound. He
explained he did this because her Mother had succumbed to an aortic aneurism.
When we went to get the results of this scan, he explained that the aorta was
okay, but he was more concerned with a mass that he noted on her liver. He recommended that we contact our Primary
Care physician, who informed us that he had seen many of these types of masses
and it was really nothing to be greatly concerned about, but he did refer us to
a gastroenterologist, who upon
reviewing the ultra-sound immediately, on his day off, recommended and made an
appointment with a liver specialist at Virginia-Mason Hospital, in addition to
a Surgeon and Radiologist for an MRI and follow-up. We went to Seattle at the end of Sep. 2013,
had the MRI and follow-up with the “liver specialist”. He, the “liver specialist” informed us that
what Rae had was a “Giant Hemangioma”. A
Hemangioma is what most of us call a birthmark, we have all seen them on
various people. He told us we really had
nothing to be concerned about, the chances of this mass bleeding was NIL. He canceled the appointments with the Surgeon
and the Radiologist, based on his diagnosis.
On Dec. 18th, after a routine Dr.’s appointment with her
Primary Care Physician we went out for a late Breakfast early lunch. She ordered what she would normally have, but
when it arrived she could not eat. She
appeared to me to be extremely pale, and she said she was awfully tired and
weak and experiencing abdominal pain. I
paid the bill, and decided to return to the Dr.’s office, to get his advice on
what steps to take, against her desires, she just wanted to go home. He came out of his office, took her pulse
while the nurse took her BP, which had dropped from over 200 to less than 120
in less than 2 hours. He told me to take
her immediately to the ER at Providence Centralia Hospital, (the only hospital
in town), which fortunately was just around the corner, this was around
noon. The ER Dr. after his first
examination told me that he was going to send her to Seattle, Harbor View
Hospital, and the major trauma center for the Pacific Northwest. During the
course of the day, as nurses were unable to get an IV started her conditioned
worsened, she was losing a considerable amount of blood from somewhere. The Dr. finally cut into her carotid artery
to get an IV started and about 5:00PM he said he was going to have her sent to
Seattle by helicopter. She left for Seattle around 7:30PM, en-route she was
given a unit of blood. On arrival at
Harbor View she was given more blood and admitted to the ICU for
observation. I followed her to Seattle
by car, arriving around midnight. She
remained in Harbor View for 4 days.
During this time we were assured that the chances of the liver mass
bleeding again was less than 10%. The
biggest problem they seemed to be having was again trying to control her
BP. On the 31st of Dec. she
experienced the same kind of symptoms that she had on the 18th, with
the exception of the paleness and weakness.
We were told several times that if she experienced any of those symptoms
to go immediately to an ER., which we did.
Again the ER Dr. wanted to send her by helicopter to Harbor View, but
because of the dense fog that was out of the question, and instead they sent
her by surface ambulance. This time
Linda, our daughter, insisted she was going to go with me when I followed her
Mother to Seattle. This time there was
no bleeding just the abdominal pain, and again the ICU Dr.’s main concern was
trying to control her BP. Let me add an
aside here. Harbor View ER is, as I have
said, the major trauma unit for the Pacific Northwest, and it is not a place
anyone in their right mind would want to spend New Year’s Eve. We, Linda and I, were amazed at the way Doctors,
Nurses and support staff in the ER and ICU, were able to maintain their
composure and equilibrium in all of that chaos.
The people that were brought into the ER were the dregs of society, the
most ungrateful, un-considerate group of people I have ever had the misfortune
to be in close proximity to, and having spent 24 plus years in the U. S. Navy I
have seen some pretty bad folks. At any
rate, after about 4 days, they, the ER Dr.’s felt they had controlled her BP
and released her back to Chehalis, with no mention of her liver mass. Sometime during January 2014, Rae’s gastroenterologist called to inquire as to
her condition especially after the bleeding episode, he wanted to know if she
had had a biopsy performed as he apparently had requested at
Virginia-Mason. When we told him what
had occurred he said he would get back to us.
Shortly after that we got a telephone call from the Surgeon at VM and we
made an appointment to have a biopsy done.
The Surgeon seemed to be quite reluctant to even suggest that a biopsy
was even necessary, but he scheduled it any way for the 12th of Feb,
we had to go up on the 11th to have blood tests taken because they
wanted to do the biopsy early on the 12th. She was all set to have the biopsy but the Doctor
who was to perform the biopsy (a needle biopsy) refused to do it because her BP
was way too high. The result was that
they admitted her to Virginia-Mason to again try to control her BP. She finally had the test completed on the 14th
of Feb. (Happy Valentine’s Day). We were
told that the results would be available in about three to four days and to call
the Surgeon who ordered the test, and to “bug him for the results” until we got
an answer. Because the next Monday was a
holiday I waited until Tuesday PM to call and was told the Surgeon was on
vacation for a week, I asked to speak to one of his “team” and was told they
would get back to me. We waited. I was going to call Wednesday PM to “bug”
them again, when about 12:30PM the 19th
of Feb, the Surgeon called us and informed us that it was not a “Giant
Hemangioma” but an angio-sarcoma on the liver an extremely rare, inoperable and
extremely difficult type of cancer to treat.
I did not feel then, nor do I feel now that that type of information
should be relayed to a person over the impersonal device of a telephone. He did
recommend an oncologist at VM who could treat us, and naturally we accepted, we
didn’t even know that there are oncologists in Chehalis. We found by accident
an oncologist in Olympia who was willing to treat Rae, however after a
conversation with a nurse who specializes in cancer treatment, our daughter,
and a conversation we had with our primary care physician, we opted to consult
an oncologist right here in Chehalis, in fact only about four miles from where
we were living. When we were at Virginia-Mason, they told us to make an
appointment with our Primary Care Physician and they would send all of her
records to them. We did and had an
appointment on the 24th of Feb.
He had no idea that she had been in the Hospital, nor any idea she had
cancer. He was the one that recommended
the oncologist in Chehalis that finally took care of Rae. We had our first appointment on the 27th
of Feb, the Dr. was apologetic for being 10 minutes late but said he was having
a hard time understanding the records he had received from VM, as they included
the records for a male patient. We had
done a little research on angio-sarcoma of the liver and found that it only
occurs in 3% of the population and of that 3% only 3% of those were female. The
research also told us that the length of survival was less than two years,
after diagnoses. Her oncologist would
not give us a prognosis based on his past experience with Cancer patients. She started Chemo on 13 March after having a “Port”
inserted into her upper chest to save having to have new needle holes every
time she had to receive any kind of injection. She had a very bad reaction to
the first dose of Chemo, they stopped for about 30 minutes and started again
after all of her vitals had somewhat returned to normal. From then on she had
very little reaction. On 22 March her
oncologist ordered a blood transfusion, which was completed at Providence
Centralia Hospital on an outpatient basis.
She had had Chemo on the 20th of March, again on the27th, and
on the 3rd of April. Because
of her reactions to the later Chemo treatment the Dr. cancelled the Chemo she
was supposed to have had on th 10th of April. The evening of 10 April, she had been
vomiting several times during the day, feeling nauseous and getting extremely
weak. I called her oncologist, and he
told me to take her to the ER at Centralia.
She was admitted late that evening, with very bad blood readings. During the period between the 19th
of Feb and the middle of Apr. her edema had become increasingly bad. She gained over thirty pounds of liquid, will
I had lost in excess of 20 pounds. One
evening she fell in the bathroom and I couldn’t pick her up, so I had to call
Linda and Vic to come and help. We had
discussed briefly about moving into assisted living, but I said no that I could
take care of her. After her fall and she
had started chemo, the oncologist’s office was quite near a Retirement
Center. After her Chemo treatment on the
27th of Mar, we visited the retirement home and decided to go ahead
and move in. Our move in date was set
for the 18th of April. After
being admitted to the Hospital her condition continued to worsen, nothing they
could do would lessen the edema, it seemed to shift around one day her arm and
hand would be hardly recognizable as a arm or hand, next day they would be
normal. Her mind started going around
the 13th. On the morning of
the 15th her oncologist told me she wasn’t going to make it and he
would make arrangements for Hospice. We, Rae and I had agreed long ago that
there would be no heroic actions to keep us alive, still it was the hardest
thing I have ever done to tell the oncologist that it was okay to remove all of
the tubes and needles. He put her on a
morphine drip to keep her as comfortable as possible. I do believe she was in
no pain, which I will be eternally grateful for. I called all of the children and told them. I
had been spending days and nights with her, just going home to shower and shave
and move some items to our new home. On
the 16th we were moved to a larger room, I did not leave her from
that time. Our youngest daughter arrived
from Virginia on the 16th, and our son arrived at 9:10AM on the 17th.
She passed away at 9:15AM on the 17th. She was cremated in Tacoma WA shortly thereafter
and was buried at sea by the United States Navy on the 11th of
July. I do not have all of the
particulars of that burial yet.
I have been working on this for quite some time
now. Could only do a little bit at a
time. Some of the dates and times may
not be completely accurate bnt are as close as I can remember. There are two things I have really learned
and am still learning from this experience.
One, people will tell me you had over 59 years together, you should be
happy for that. Yes, that is a long time I guess, but it was not long enough at
all. The second lesson is when people
say that they know what you are going through.
I know I used to say that. I know
better now, I have no idea what pain people in my same position suffered and no
one knows what I am experiencing, and I am not smart enough to put this
experience into words. I have never had
any great fear of dying, I have always wanted to live as long as I could, as
long as I was healthy and not a burden on anyone. Now, I have to admit, there are times when I
would welcome death, no I am NOT suicidal, just not sure how to live without
her.
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