I had to wait until December to elect to get coverage. So I waited, and felt. At first the lump kind of felt like the hamstring was becoming shorter, and I needed to stretch it out. So I did. Every opportunity I got I was stretching and palming the floor. The knot grew bigger and bigger. And to myself I started to refer to it as my “Alien Baby” or my growing pineapple. Come on you get it don’t you? I was overweight, had (still have but I could care less cellulite) Cottage cheese thighs. You know pineapple and cottage cheese go well together. You get it? No? Oh well, stick around there is much more humor where that came from.
December came around and I got the health insurance. Man that took a bite of my little pay
check. The coverage kicked in January 1,
you think I would have made a bee line for a doctor. Nope.
Wanted to be sure I had coverage and I had that little insurance card in
my hand, that and I have an aversion to doctors and hospitals. Not to mention needles.
It had grown. From
the size of an egg to the size of a large pineapple. And it was becoming very noticeable through
my pants. The left leg was getting
larger, and the pant leg was getting tighter.
I knew I wasn’t going to be able to hide it forever.
The store manager noticed it and told me if I didn’t get it looked at then I didn’t need to come to work. Well, the hell with that. I need to come to work. I need the paycheck. It helps pay the bills and cover expenses for the shelter! (Not only did I work a joby job, but I ran a nonprofit ferret shelter and it had grown way beyond what I had ever expected, but that is another story for another day. Yes, I said ferrets, and mink, and iguanas and snakes, and fish, just not cats and dogs. All the unusual animals that vets that are knowledgeable are hard to find. But like I said, that is a story for another day.
Since the insurance kicked in I decided to go to one of those Urgent Care Centers the next morning. I worked from 1 PM to 10 PM, so I would be able to make it to work. I filled out the paper work, and for reason for visit, I put large growth back of the left leg. So I put the gown on, and the doctor came in, she asks me why I had come in (I filled out the paper work, she was reading it what can’t she understand about large growth?), I laughed, stood up turned and showed her.
It is never a good thing to hear a doctor take that shocked breath in. Before I walked out I had an appointment with an Orthopedic Surgeon, an Oncologist, and a Radiation Oncologist. CT scan, MRI, biopsies, a plan was made. Chemo one week, followed by radiation for two week for a total of three cycles, then surgery. Depending on the margins, would decide if I had to do another cycle of chemo.
The Cleveland Clinic is a really good hospital, but it is
hurry up and wait. They are HUGE! Never mind the Ortho surgeon was on one
campus, and the Radiation Oncologist and Oncologist were on the opposite end in
the “Cancer Center”.
I remember the first day I walked through the Cleveland
Clinic, I had a biopsy done by the Ortho doctor, and I walked across campus
through the pedestrian bridges to the Cancer Center. I stopped looked at the sign before I walked
though it and no it wasn’t one of those “OMG I HAVE CANCER” moments. I shrugged looked at my ex and said, huh, I
guess it is official, I’m a cancer patient.
Then I laughed.
I actually had the Oncologist Fellow ask me if I was in
denial; that I could die did I understand that.
I told him told him no I am not in denial, and I understand I could die. I just understood the Circle of Life. Working in an animal shelter pretty much gave
me an up close education of life, sickness and death. I told him I understood the cycle and was
fine with my mortality. We had some
really great conversations. Really
intense philosophical conversations. I
really do miss those.
The results of the biopsy was a round cell carcinoma. Normally it occurs in children, and occur on
a regular basis in animals. I should state
here, they called a sarcoma, but I switch between the two words. To me they are the same but in reality they
are very different. So I will hence for
call it round cell sarcoma. Oh, don’t I
sound all that and a bag of chips! The
doctor said I was one in 4000 in the world that got it, but if you research,
you find the number varies, from 4,000 to 10,000 in the world or in the US.
You’ll love this.
It was one of my better days after chemo and my very lovely friend,
Michelle, was helping with the animals, and she asked very seriously, how I got
a sarcoma.
Now, let me stop for a moment and explain, sarcomas are
very common in ferrets. Get where I am
going? So with a very serious look on my
face I said I caught it from the ferrets.
I was one of the rare people who could catch it from animals.
Her face went white, she started to stare, and didn’t
know what to say. She believed me!! I couldn’t keep a straight face any longer
and laughed so hard. I explained to her
you cannot catch cancer. It is just
something in the DNA that hick ups and sends the cells into a growing
frenzy. And since the cells can get into
the blood, it can spread or Metastatic.
It was a very simpler explanation of cancer. And I truly do believe that some of us lucky
humans have the genetic makeup that just seems to give those crazy cells the
green light to make our lives as inconvenient as possible.
The Fellow used to say, I was his favorite because I was
so grounded and I laughed. I didn’t
understand what made me so different.
Doesn’t everyone? How can you not
laugh and say fuck it, I’m fighting.
Even on the shitty days, you have to laugh and keep going. But from what I have been told by many nurses
and hospital employees, not everyone has the same outlook. They are afraid. I just don’t understand what there is to be
afraid of. No I don’t want to die. My life was far from perfect then, and it isn’t
perfect now (hell of a lot better though!)
I want to be around for a long time.
The only thing that makes me even get a bit sad is by dying, I leave my
kids. Sure they are adults, but that
makes no difference to me, I haven’t been the best mom in the world, let’s just
say I had lots of issues and leave it at that.
None of which were drugs, thank you very much.
Our plan of attack was chemo for a week, then two weeks
of radiation, for a total of three cycles.
Two or three weeks off so I could recover and heal, then surgery to
remove the tumor. At the time of surgery,
it would be decided if the leg could be saved.
I wouldn’t know until I woke up.
I looked at it this way, one leg or two, the animals still needed me,
and so did my children ever though they were grown and on their own.
I did my chemo in the hospital. The chemo regimen was called MAID (mesna,
adriamycin, ifosfamide, and dacarbazine. A very aggressive chemo treatment. So I was to check into the hospital while
being treated over a week then go home.
The week went by in the hospital, and I was handling it
fine. No nausea, nothing, I was eating
just fine, not getting sick. I remember
thinking, so much for loss of appetite and getting rid of some of this excess
weight.
I remember getting out of the hospital thinking this is
going to be a cake walk. Yeah, right, I
was at the grocery store after getting out of the hospital. My ex looks at me as we are shopping. He asks, “You ok?” Me, “I got to get out of here fast”. We hurry to the checkout, get to the car, and
low and behold, I am tossing my cookies next to the car. It went downhill from there.
Cake walk my ass. I spent the week throwing up. By the time day 10 came around, my immune
system crashed, and ended up in the hospital.
The only good thing about having a port (well not the only good thing)
is they can draw blood through it.
A week of chemo, by the fifth day after the chemo cycle
ended I ended up in the hospital. Blood
transfusions. Strong antibiotics. I found out I was allergic to
Vancomyicin. Red man’s disease. I turn into a giant itchy strawberry. Few days in the hospital, I get out. Feel almost normal. Then the two week break was up and back into
the chemo and all over again.
The radiation burn was nasty. It got really read, and oozy. No infection thankfully. It burned.
One day I was desperate for some relief from the constant burning sensation. So in my wisdom (if that is what it is
called) I thought, “Huh, a sun burn in nothing but a radiation burn, and
Solorcane does sooth sun burns, so I’m getting some and even if all I get is 10
minutes of relief, it will be worth it.
WHAT A BIG MISTAKE!!
That shit BURNED!!! Even after
washing it off it still burned because some of it absorbed into the skin. Never again have I ever used Solorcane on a
radiation burn.
Made it through the chemo and radiation, finally time for
surgery. They removed my left hamstring,
the doctor said once they got the tumor off it expanded, got much bigger. It was removed on Friday. The following Tuesday, they did a free flap
with the right latissimus
muscle. Basically they took the right
lat and covered the bone and nerve endings on the left leg. Doesn’t function, but protects.
While I was in the recovery room they were taking blood,
a lot, and not from the port either. I wasn’t doing very well. They started having to take it out of my
foot, and I got to the point I didn’t care.
Turns out I was bleeding into my chest.
Next thing I know I am in the surgery room again, with the doctor talking
to me. We have to do emergency surgery,
you are bleeding in your chest, and you are bleeding out do you
understand? I shake my head yes. I really didn’t care.
Yes, I died on the table and they resuscitated me.
I woke up in Intensive Care, on my stomach, with a
feeding tube down my nose, which made me feel crappy. I actually hate things around my nose, so my
ex made the doctor pull it out. Though
the doctor that pulled it out wasn’t happy about it. He yanked it out. Saying she’d better eat.
I had to spend the week on my stomach, to the muscle
could knit and blood flow establish. I
couldn’t get out of bed. Yes I ate while
I was on my stomach, it was horrid, and my neck and shoulders started locking
up.
After a week, I went in for the first of several skin grafts. I woke up on my back and it was wonderful. Then the rehab started. They actually wanted to send me to a rehab
hospital. I said no. Home. I couldn’t walk. I was in a wheelchair when I got out of the
hospital. They told me I would need a walker
or cane. Yeah right.
My rehab? The
bathroom was on the second floor, so since my goal was to use a toilet that
flushes, like an adult. That bedpan crap
was getting really old. (I made a joke
there did you get it?)
I went home, and when no one was home, I’d get into the
wheel chair, go over to the stairs, and get myself out of the chair and try to maneuver
up a stair or two. It was difficult. But
I got it done. At first going up and down the stairs was on
my butt, then I got strong enough to stand and had to start it over again. Hanging on the railing and up one or two
stairs a day, increasing when I could.
I was told I may never really walk again, and if I did I would need a walker, or at the very least a cane. I got out around June 9th and by June 21st I was up on crutches. By the end of July I was walking on my own. Stiffly, but I was doing it. It took a few years to get to the point I could wear heels.
Oh yeah, I had a total of 8 or 9 skin grafts to cover the
muscle, they would literally skin me, and use it on the wound. For some reason portions kept dying. Thankfully by Halloween they were done.
I was overweight when the cancer kicked in. I was losing and wanted to shed another 40 pounds. Well I shed that and then some. I went down to 100. So I started working on gaining weight. Problem with that is since I am the individual that eats their emotions, yeah, by 2008 I was tipping the scales at 250.
Moving to Virginia in 2008 started me on the road to weight
loss again. I made better choices, didn’t
deny myself anything. I wanted McDonald’s,
I’d get a kid’s cheeseburger meal rather than the quarter pounder meal. Once a week I allowed that kids of
treat. I ate about every two hours. Tomatoes, peppers, carrots, yogurt. Started walking then working out.
By 2011 I was down to 150 pounds. I liked it.
I had curves, and looked so much better.
Well, I had started getting sharp pains in the lower left
abdomen, I made an appointment with an urologist, and the tumor was big enough
for him to feel. Ok, New Oncologist,
Radiation oncologist, and surgeon. Ct
scan, wrapped around the tube that the kidney.
Sigh. The CT scan also showed a
tumor in the upper portion of the right lung.
Welcome to Virginia, and Mary Washington Hospital, which
is a great hospital.
We decided to go with the MAID chemo, one week chemo, two
weeks radiation, just like before. Did
better with the nausea, the drugs for that have improved like crazy. But yes, I spent many a day in the hospital because
the immune system crashes. Stopped
producing red blood, so they give me blood transfusions. Had reactions to them. So I don’t get blood unless they pretreat me with
Benadryl.
The first surgery was the lung, I was hoping it was a
small little one they could do a minimal invasion surgery, but NOOOO. It has to
be taking up 2/3 of the right lung. Not
to mention the damn thing was encapsulating the vena cava.
So the first surgery was having my chest cracked open,
ribs separated, and the upper 2/3 of the lung removed. Oh yeah, and the vena cava had to be rebuilt
because the tumor was wrapped around it and it just fell apart. Hurt like a bitch to sit up the first
time. But I survived and got on the road
to healing.
Four weeks later it is time to take the tumor out of the
abdomen.
Dr. Flynn decided that it would be a good idea to get a colposcopy
and endoscopy done right before the surgery, turns out there was a tumor in the
intestine too. So a length of intestine
came out with the tumor. Huh, I should
have warned you about the picture.
Sorry.
My son was there the first time they got me out of bed
after abdominal surgery. He said I had
cartoon eyes, they seem to pop out of my head.
This hurt worse than the cracking the chest open. Funny how you put things into
perspective. If it wasn’t worse than a migraine,
I’d deal with it and move on, if it is less than the labor I had with my son,
couple of aspirin and keep going. (That
was not fun, but so worth the pain) now nothing compares to the pain of the
abdominal surgery.
Oh, did I tell you that the port stopped working? Yeah. They had to replace it because a tumor
decided to pop up on the right pectoral muscle.
The size of a golf ball. So when
the golf ball sized tumor came out, the margins weren’t good, so they took out
the port and put in a new one. And chemo
with radiation was on the table again.
That was August. I
was sitting in a hospital bed talking to my daughter when the “earthquake” hit.Radiation and chemo. Last day of chemo was Dec. 30 2011.
2012 was just follow up appointments and CT scans. I don’t ever think of myself as cancer free,
just waiting until the next dance.
January 2012, I wake up in the middle of the night in
pain. Like I can’t stand it pain, I am
not one to wimp out because of pain. Ask
the nurses. So I ask my roommate to take
me to the ER and let the boss know where I am.
They do a CT scan.
The ER doctor comes in with a horrified look on his face. He flops down in the chair, I already knew
what he was going to say. I was
laughing. Hell, it is just another inconvenience.
Unfortunately Dr. Flynn is now at Cancer Center of
America, so I was introduced to Dr. King.
I start chemo, and guess what?? IT doesn’t work. You can inject into it, but cannot draw from
it. Sigh. Chemo starts, and three days
into it, my system crashes, and hard.
Blood transfusions, reaction, they discovered small micro
tears in the intestine. There is ecoli
in my blood, no I didn’t have it. The tumor
was shrinking and tearing. Oh yeah, it
was in the upper area of the abdomen this time.
Ok, I get better, chemo is stopped just because of how
bad I crashed. Surgery is the only
option on the table right now. As soon
as I am healthy enough, surgery. Dr.
King wants an endoscopy done to see what is involved. It could just be on the intestine and it
would be a simple case of removing it.
But if the duodenum is involved, gall balder, pancreas,
it will be a Whipple. Reroute the
stomach, take out the gallbladder, 40% of the pancreases. Guess who won the lottery? Yep, it was me. A Whipple!! March 13, 2012. My abdomen gets opened a second time!!
Here is a kicker for you. I told both Doctor King and
Doctor Flynn, while you are cutting out stuff, cut some of that excess skin I
have from all the weight I lost. It makes
buying clothes a pain.
I now nausea issues because I can’t process food like a
normal person, same food two different times once I am fine next I’m looking
for the Zofran.
I’m down to 120 and I have to work at staying at it. So I eat.
Healthy stuff, and that is probably why I can’t seem to gain anything
much. I go from 120 to 124 within a
week. Skipping meals isn’t a good thing
for me. I tend to get a bit cranky.
I discovered the tumor in my right leg near
Christmas. Wasn’t going to be ruining my
kids Christmas. And since I had booked
and paid for a vacation to Bali for January, I wasn’t going to do anything
until after I got back. Besides, it may
be slightly bigger than a quarter.
February 17th a CT scan of the abdomen and
chest, those damn tumors turn up everywhere in me and it is better to be safe
than sorry. February 18th ultra
sound and biopsy on the leg. Turns out
the tumor is bigger than I thought. It
felt flat like a quarter. Nope, bigger
than a golf ball, going into the muscle.
Right now I am waiting for the doctor to call and let me
know what is what. I want to do
things. Living Social has a zip line
deal in West VA I want to do, but if I’m in chemo or recovering from surgery I
can’t do it. And there are specific
dates for it. I want to take scuba
lessons thanks to Bali. I think I can beat
the fear of deep water!! But again, if I’m
doing chemo I can’t. Never mind the surgery
aspect.
I want to let them know at work what is up, time tables
and what may happen. Well, chemo tends
to throw a wrench in the thing and lands me in the hospital with no immune system.
I hate waiting. I
want to just get this over and done with.
I want to deal with it. Head
on. It is such an inconvenience. Normally I would have gotten the Living
Social and found a place for lessons. But because of the unknown I can’t. I am not a fan of throwing money away, especially
since I’ll be sending a bit of it to medical expenses. Out of pocket sucks.
Now you are where I am, if you want to know more or have
questions about the treatments, reactions, what chemo is like, just ask. I don’t mind.
It helps people.
Cancer is hardest on family and friends. They can’t change things or do anything, they
can only watch. While the patient can
choose to fight and laugh. At least I
know I have choices.
No comments:
Post a Comment