I know it's been awhile... so here we go!
Back in October, actually October 2nd, I went for my last chemo session
for this round on Brentuximab... after this session we would do some scans and
determine if I appeared in remission or if we should continue with the chemo. The neuropathy in my fingers and toes were
pretty bad; so my doctor talked me into not having the chemo that day, we would
do a PET scan to determine if the cancer was still active and then decide if I
could stop the chemo altogether or if we needed to just delay it, giving more time
between sessions and giving my nerves a chance to recuperate.
She said she never had to talk a patient OUT of doing chemo before… I
was concerned about the cancer coming back again. When I finished the round of CHOP last year
and was “declared” as “appears to be in remission”, it was two weeks and the
cancer on my arm had reappeared, then a few weeks after that it appeared in the
lymph node under my right arm again… also spreading into my chest area and into
my bone marrow in the pelvic area. So I
had reason to be wary.
We were preparing for the PET scan when we were notified that Medicaid
denied the request! I received a letter
from the panel of their decision by certified mail… we had to sign for it! Unbelievable!! This NEVER happened before… I had been on
Medicaid for six months and had just been renewed on Sept 11th. Evidently part of the change was the
beginning implementations of Obamacare, such as the setting up of the “panels”.
So I guess Republicans were not wrong…
[A little background… last year
my cancer had progressed and took a pretty bad turn in November. In December I applied for Social Security
Disability and Medicaid. Up until this
point I had been getting help through the hospital’s financial aid services, I
lost my insurance when I was laid off in July 2011. I was approved for SSD in January and
approved for Medicaid in February. My
Medicaid deductible is $5400.00 every six months… so it’s kind of like having
insurance. Very expensive insurance…
especially for someone on Disability.]
So, my PET scan had been denied.
They informed us that we could do a CT scan. We didn’t need a CT scan. We needed a PET scan because the PET scan
lights up the active cancer. We were
looking to see if the CANCER WAS ACTIVE so we could determine if I still needed
the chemo or if I could take a break! Since
we didn’t have much choice, we did the CT.
It showed two irregularities, or nodules, or something… one in each side
of my lung. Slightly concerning… but not
immensely. [When I was first diagnosed in
2004, the scans showed some nodules, one in each lung. The doctors there assumed it was lung cancer
and immediately put me at stage 4 and started CHOP chemo. I had one dose and then moved here to NC; the
doctor here stopped it immediately and said there hadn’t been enough
testing. It was determined to possibly
be scar tissue from when I had a severe case of pneumonia in 1991.] I thought maybe this is what was showing up
this time also, my doctor doesn’t agree.
She says the scan I had earlier this year did not show this. So now we’re up in the air… is it infection
from a cold, was it the scar tissue and just a fluke that it didn’t show up in
the last scan, or is it cancer that has traveled to my lungs?? Which would be WAY BAD!
Then I received another letter from the panel (certified mail, of
course)… they also denied the physical therapy my doctor prescribed for the
neuropathy. WOW!! I began to wonder if I was ever going to get
approval from Medicaid for anything ever again.
I really felt as if I was getting left to die. This was becoming unreal.
When I saw the P.A. on Nov 5th, there was discussion of
symptoms coming back and I was informed that we were going to wait until
January and do another CT, since Medicaid would not authorize the PET. I was highly upset! I had been off chemo since September… my
symptoms were coming back in full force, the difficulty in breathing, shortness
of breath, the wheezing, the pains, etc.
I told her I thought it was very much like playing with fire! I have symptoms coming back, a possibility of
it being in my lungs… and we’re gonna wait another couple of months?? Are you serious? I’d hate to wait until January, do the scan, and
then find out, SHIT, if only we scanned sooner, now it’s too late! If only we had caught this sooner! I mean REALLY?! I DID NOT GET THAT AT ALL! The P.A. told me she understood and went out
to talk to the doctor. It was decided
that we would do the PET scan, but through the hospital financial aid
services. I thought, “Thank God!” I believe it was the very next day that I
received a voice message telling me that the doctor had changed her mind and
that she didn’t want to see me until January.
I was shocked!! I was
dumbfounded!! I was speechless! After the initial shock wore off I became
upset, angry, severely pissed off… HOW DARE THEY JEOPARDIZE MY LIFE!! I wanted to cry, but I was so angry… I wanted
to go down there and demand the scan; I was going to tell her that if we wait
and the cancer spreads while they do nothing, then I was going to sue her freakin’
ass!!! I was so upset and so angry that
I ended up shutting down. I couldn’t
call, I was afraid of what would come out of my mouth. I didn’t want to go running down there in
fear of creating a major disturbance and having security called. I contemplated getting a second opinion, and I
thought about finding a new doctor. But
I adore my P.A.
I shut down for about two weeks… then I had something appear on my back. This was taken on November 29, 2012. *In some of the photos I marked some things that looked suspicious to me, they appear to be growing as well as it all progresses. They're just little bitty baby ones right now.
Okay, let’s back up a bit. Right before I saw the P.A. back on Nov 5th,
I had what appeared to be some kind of bite, like a huge mosquito or bug bite
on my right arm. Didn’t think much of it
so didn’t mention it. But now it had
become perfectly circular, it was very pink and had a red line around the circumference
that was a little indented. In a way it
looked like a burn, kind of like from a car lighter. At one point, after a shower, the top layer
of skin came off and it REALLY looked like a burn. Very strange.
Wasn’t sure if it was cancer.
Didn't photograph the first stage of the arm thing, the big bug bite stage, then it started to look like this.
Then, a few days later, after the shower it looked like this.
Then this thing popped out on my back. This was the day before Thanksgiving.
I had an appointment with the P.A. on Dec 4th for Labs &
Exam, figured I’d call and bump it up, then figured at this late time there
probably wouldn’t be any openings. So I
called my family doctor. She thought the
one on my back looked like an infection, so she put me on antibiotics to clear
it up. I told her that mom removed a
tick last year from approximately the same place, so she had blood work done also
for Lyme disease and Rocky Mountain Spotted Fever, just in case. Well, the antibiotics didn’t affect the one
on my back at all, but the one on my arm started clearing up. At this point I don’t know if it was the
antibiotics, or it just running it’s course.
On Nov 29th I had mom take some photos of the one on my back…
SOON AS I SAW IT I KNEW… I knew it
was cancer!
Here it is on December 1, 2012
Here it is on December 10, 2012
I saw the doctor on Dec 4th, told her I was fairly certain
it was cancer. She looked at it and
agreed. She said she also feels swollen
nodes on the left side of my chest/arm area.
Said we needed another CT and a PET scan. Just found out Monday that Medicaid approved
the scans, thank God! My PET scan is on
Thursday and the CT is Friday. I see the
doctor on Monday, Dec 17th for the results and game plan. Still
feeling uncertain about my doctor… feel a little betrayed and definitely feel
that trust has been broken. Will
definitely need radiation, which I think we need to be moving a little faster
on. It has already grown substantially
and I’ve found several new ones breaking out, they’re still tiny, but coming
along just as fast. We keep taking
pictures every few nights to track the progress. It is EXTREMELY fascinating to see it like
this… my camera phone is AWESOME!! Some
really great high-def photos. The little
ones we couldn’t see with our eyes, we wouldn’t have known if we hadn’t taken
the photos. Then when I used the magnifier on them... WHOA!!!
You have to admit... it is a little fascinating, isn't it!?!
So that’s what’s been happening and where I’m at! In the middle of all this right before and
during Christmas… AGAIN! Well, look at
it this way… if the Mayan’s are correct and the world ends on 12/21… at least I
won’t die from cancer and I won’t have to do this crap anymore! Oh, that reminds me, I have a dental cleaning
on 12/21… got to have clean teeth for the end of the world! Flash those pearly whites! :D