Much has happened since my last blog posting. I will try and give you a brief recount of the important stuff then I will let you know where things are today and what I have to look forward to in the future……..
So two Wednesdays ago seemed like any other day. I
quickly tire after a morning full of errands and chores and decide that what I
really need the most is a nap. So I stripped down and laid down for a nap. When
I awoke I was in the most unbelievably excruciating pain in my right groin/hip
area (basically right where your leg meets your groin). The pain was so intense
I could barely move around in the bed let alone stand up and walk to the living
room. With tears streaming down my face I struggled to make it into the living
room. I had no idea what this pain was at this point. I thought it might be a
really bad Charlie horse, but I have had those in the past and they go away
after some time and this was definitely not going away. Thankfully Eric arrived
home from work shortly here after and told me to drink a glass of juice and
tonic water in case it was a charley horse. So I did, and took some of my
prescribed pain medication (morphine) and tried to sit comfortably on the sofa.
Neither the tonic water nor the morphine had any effect on the increasing pain
I was feeling. Eric took one more look at me and said you're either calling an
ambulance or you’re getting in the car and we are going to the hospital. I was
in so much pain there was no argument from me which I think surprised him a
little too because he realized that this was serious.
It wouldn't be normal if I didn't leave something I needed at home and sure enough I left my id in my wallet at the apartment and poor Eric had to drive all the way back home and get it. I called my Dad and then made the longest five steps of my life up the driveway into the entrance to UCSD Emergency. I was triaged and taken right away to one of the beds in the hallway. I have seen people in these beds before, the homeless, the burned, and the really sick ones who just lay there screaming for someone to help them or put them out of their misery. I never thought that I would be one of those people, but I found myself in so much pain that all I could do was yelling for someone to please help me. I finally got a doctor to see me and some pain medicine in my system before I was moved into a private room. After lots of blood had been taken and all kinds of tests sent off for analysis, one doctor whose name I can't recall, came into the small hospital room in ER to talk with myself, Eric, and my father. He said that they were worried about a specific kind of tissue infection and that I would need to have emergency surgery that evening.
What?
Come again? Are you freaking
kidding me?
I looked at Eric whose eyes were different than
normal. They weren't as bright blue as they normally are, but rather a grayish
blue that registered in my mind as him being scared. My Dad had a similar look
and the silence spoke volumes to me. I began to plead that I did not want or
need the surgery, but was quickly silenced and explained that I didn't have a
choice- I was going to have the surgery. Scared, hurting, and uncertain of what
they might find I had the surgery. My mom told me I was brave, but I told her I
didn’t think I was because everyone else told me I had to.
Moving forward in time, I woke up in ICU on
Thursday, but honestly I don't remember much from the next couple days because
of the amount of pain I was in and the amount of strong medications I was
taking. I had the enjoyable experience of a Foley Catheter and three central IV
lines coming out of my neck. In short, I looked pretty sick, but pretty badass
at the same time. For the first time in my life I needed someone to literally
wipe my ass after using a bedpan in my hospital bed. Correction, after using
two bedpans (filled the first one and needed another one). I spent a week in
ICU recovering with wonderful nurses taking care of me and fantastic friends
and family who came to sit with me and cheer me up. I was discharged from the
hospital 9 days after going in and just in time to be home for the Fourth of
July holiday.
Since coming home I have been slowly recovering
from surgery and the blockage in my lymphatic system that has caused the most unbelievable
swelling. I am not a doctor, but I believe what has happened is that one of the
tumors from my KS has grown inward rather than outward from the skin. This
tumor is then either completely blocking or pressing on lymphatic draining
channels causing this tremendous buildup of fluid and swelling. I hate to be
graphic and gross, but I really didn't think it was possible for one's private
parts to be so swollen. I mean I have seen shows on National Geographic, but I
never thought something like that could or would happen to me. The only relief
comes from the bath tub or heating pad and both are only temporary. The
morphine pain killer I have been prescribed barely touches it and it makes me
feel quite under the influence. I take it before bed with an Ativan and my
Gabapentin (deadens nerve synapses in my legs to relieve pain). The combination
knocks me out so at least for a few hours I can rest and be in peace.
Today I have an appointment with the oncologist Dr.
Reid. I have many things that I want to discuss with her as I am sure that she
has many things to go over with me. After talking things through with myself,
Eric and my Mom and Dad; we all have agreed that getting chemo is the number
one priority because of how it helps the swelling and KS. I am planning on just
going in there and looking her straight in the eyes and saying that I
understand the risks of doing chemo if my blood work isn't high enough and I
also understand the risks of secondary infections such as neutropenic fever
should I have the chemo, but for me the risk is worth is because I don't know
if I can endure another week or two weeks suffering in this much pain and
discomfort.
My appointment is at 3:20pm this afternoon so until then its hurry up and wait. I will keep you all posted on what happens, but please keep your prayers and your love coming my way. I really could use it today. Thanks again friends and until next time, be healthy and happy.
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