Well, here I am again.
I relapsed.
And honestly, it was 100x's worse this time hearing the news
that the Leukemia came back than actually sitting in the doctor's office for
the first time finding out that I had cancer.
And just the way it was told to me wasn't exactly the best
choice.
Since OU is a teaching hospital, I have a medical
"team" that consists of students, residents, fellows, and attending
doctors, etc. So in the mornings, I usually see the medical students first,
then the residents, then everyone else. Well the first kid who came in here
said, well Miss Begay, I have good news for you concerning your biopsy....or so
I thought. Maybe I wanted to hear those words so bad come out of his mouth, I
made it up, but I swear that's what I hear. Then he said, unfortunately the
Leukemia came back. The rest of what he said flew out the window and I labeled
it unimportant because everything is repeated 50 times again in each ear before
anything is ever done so I could care less. By this time, the tears are
uncontrollably rolling down my face and my body is actually twitching while I
cry...no noise yet but i felt it coming. So I probably made the doctor
uncomfortable because he was just staring at me saying whatever he was saying
and I was nodding and trying to control myself but it was hopeless. So then he
said, I'm sorry about the news, and quickly walked out.
So then, the OU student on my case came in and I was crying
my eyes out and when he came in I quickly wiped my face and said Good Morning!
He looked puzzled and was asking if everything was alright. I said no and told
him that they said the Leukemia came back. And he was just ask shocked as I
was, lol. He was asking who said that and eventually he said, "I didn't
hear about this yet so I would wait until the official word comes from the
team." Naturally, this gave me hope. Only to be shut down 5 minutes later
when the team came back and confirmed my relapse.
Once again, I managed to make everyone uncomfortable in the
room by hysterically crying and no one wanted to look at me and I even got a
few tears from the residents on my case. After the news and explanation of what
was next, a few doctors stayed behind and said I'm so sorry Miss Begay and
rubbed my leg or foot (sounds weird) but it was nice to know that the doctors
still have not lost the idea that patients are human and we do have feelings. -
Which is a WHOLE another story.
Anyways, the main doctor offered to get me some anxiety
pills to calm myself down because I guess I was a complete MESS....and if you
know anything about me, crying or showing any type of emotion is just NOT MY
THING. So when I actually do, it has to be for a legit reason. After they left,
my sister was in the room with me and she asked me, "what's the hardest
part about this." and I'm glad she asked me....
because I didn't really think about that. Now of course a kajillion
things are going through my head but the main thing that kept flashing by
was....I don't want to feel like I did during my last chemotherapy round, I was
always tired, a little sick, and just overall yucky. I also kept thinking about
work and how it just started. All my 7th graders and how they're without a math
teacher. How am I going to afford so many sick days and school just started.
Are people going to understand that I want to be at work and if I could, I
really would. I enjoy working (no matter how much I complain) and putting forth
the extra mile....but two years in a row?? No child deserves missing out on
having math. :(
But I can't do anything....work vs. life.
no competition.
So anyways, I sat around and cried for a bit then my sister
offered to go to Wal-Mart for me and I asked her to pick up some new bed
sheets....these ugly white hospital sheets had to GO...and replaced them with
leopard sheets, she got me a zebra print luggage to tote my stuff around,
popcorn for a somewhat healthy snack so when my salt cravings come around, I'll
be prepared, and miscellaneous shower items I didn't bring because I didn't
think I would be here for 3 weeks. New things always make me feel better so I
cleared some tears. Then I find out that on day 1 of all of this not only do I
find out I had cancer AGAIN....but also that I will have a PICC line put in (it
hurts) and also I would be having my first intrathecal chemo through my spinal
cord....which by far has to be the worst thing ever if you have a doctor who is
inexperienced. For my faithful followers, remember last year when I had the guy
who missed a zillion times and still didn't get it?? Well I'm still having
nerve pains every once in a while.... especially if I do a lot of jumping when
I exercise (box jumps, toe taps on a box, lateral jumps, etc.). So of course,
naturally, I questioned the doctor who was doing it and grilling them on how
many have been successful, how many he has done by himself 100%, etc. For those
who are undergoing stuff like this....don't be afraid to ASK these type of
questions, it may sound rude, but it’s your body not theirs.
Before the PICC line nurse came in to give me new central
line, I took an Ativan (for anxiety) and hopped in the shower to give myself
one last good scrub before I would be lying in bed for a few days. While the
nurse was prepping for the line, I started to feel....less stressed and happier,
lol. It was WONDERFUL, like all the feelings of anger and sadness just went
away in la la land. I was relaxed. The procedure itself wasn't too bad after
the two shorts of lido cane and my happy pill....but then came the spinal tap.
It wasn't too bad but I definitely freaked the resident out because the senior
attending had to finish the job because they were poking around where it wasn't
numb and I was probably crying. Lol.
So after that procedure, it was chemo time. That’s right, a
diagnosis and chemo day 1 on the same day….could this day get any worse right?!
The chemotherapy regimen will consist of 5 days of two
different types of medication. The first type of chemo is called Etoposide and
the second is called Clofarabine. Both are given through my IV and both made me
sick last night. Not throwing up sick (I’m sure that will come later) but more
just nauseous like I wanted to throw up but I was just lazy so I endured the
pain. Usually, I just go to sleep for these types of side effects and tough it
out but something tells me this round of chemo is going to get the best of me.:(
So I’ll do these two chemo types for 5 days straight and then rest on day 6, 7,
and 8. Then on day 9, they’ll give me a harsher drug called Asparaginase. Yuck…sounds
like asparagus. Lol. Apparently from what I hear, this last type of chemo is
the worst of the three so by day 12 I should be out of it. L Not looking forward to
that. I could already tell a difference last night in the chemo compared to the
HyperCVAD series most ALL patients go through during their first round of
chemo.
So aside from all my day 1 crying episodes, I let some
people know about my relapse. I told my work people, close friends, and a few
others who would be more directly affected than others on my condition. It’s
always hard telling people and explaining to people what is going on without
them completely cutting them out of my life, because that isn’t what I want. I
want people to know that I’m still me. I may look different, but underneath it
all…I’m me. And that’s what is so hard about all of this. It’s like every time
I went through this, I have to start over and explain myself over and over
again. And when I don’t explain myself, I feel guilty for not being honest. Oh
well, I guess this is God’s way of keeping those who don’t matter in my life,
it’s already precious enough, I don’t need clutter getting in my way right?
So speaking of friends, some work friends came up last night
and ordered pizza, brought their happy faces and we watched a movie together.
We were all tired but after my awful day, I felt better in the presence of
people I really do care about. I asked each of them to come and didn’t expect
them all to show and it made me feel good that they did. I wish I could
surround myself with more people but people are busy and I get that.
Hmmm…okay so that was yesterday….today, the doctors came in
after a restless night I had, and seemed hopeful about my transplant….WHAT?! sorry
forgot to mention my full chemo regimen…..
Okay after my 9 days of chemo, I’ll recover for about 14
days (like before) in the hospital then I will have another bone marrow biopsy
performed to check the status of the cancer. If they find cancer….I’ll do
another round of chemo or basically until remission is achieved. Then, I’ll
recover and go straight for a transplant via a bone marrow match somewhere in
this world, or do a blood cord transplant. (yuck). So right now, were praying
for remission after one round (especially since cancer was caught early) and a
transplant to immediately follow. A transplant will hospitalize me for 6 weeks…more
details to follow.
Alright so that’s pretty much all for today. They have me
hooked up to fluids to continuously flush my liver and it’s annoying. I have to
use the restroom every hour. On the brighter side, my liver and spleen (which
have been enlarged for quite some time now) are finally going down. J Alright well that was
a long first blog entry. If I have more exciting news today….I’ll be sure to
post.
I love you all and thank you for your continuous support
though all this. I appreciate your thoughts and prayers more than you can
imagine. Until next time, stay classy. J
I’m taking a nap.
Kim
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