My Wife Is My Hero…
After reading this post you will understand….Earlier this
week we had our routine Madison trip to visit Kelly’s Oncology Doctor. Last week she had an unscheduled CT scan of
her chest because she had started again with more coughing and shortness of
breath. Well, we found out what was
causing these symptoms and unfortunately it was something we didn’t want to
hear….The main mass (tumor) in Kelly’s upper left lung as well as the
surrounding lymph nodes in that area had increased in size, not drastically, but
enough to cause these new problems. And
basically those masses have started to restrict the surrounding blood vessels
and they sit above her heart. Which, in
turn is causing the shortness of breath and coughing.
Before I continue…I feel the need to recap some information
for everyone. Hopefully this will help
answer some questions and give everyone a better understanding of what we are
dealing with. I apologize as this might
get a little long and some of it is not easy reading…
Kelly has Small Cell Anaplastic Carcinoma (Small Cell Lung
Cancer) which has metastasized
(spread & grown) to her brain, hip bone, and left adrenal gland. She DOES NOT have brain cancer; she DOES NOT
have bone cancer. It’s important to
remember this because she has to be treated for the correct type of cancer and
cannot just receive any “cancer treatment.” (new or otherwise) This is the most aggressive form of lung
cancer and is almost always found in people who are full time smokers and more
commonly found in men than women which makes Kelly’s case extremely rare. I could give you more stats on SCLC but feel
free to Google it if you like.
About the middle
of last May (2012) Kelly started having headaches which seemed like a
sinus infection. After about two weeks
we couldn’t take it anymore and I brought her to the hospital where they did a
CT scan of her brain and found 4 lesions (they called them) or
masses/tumors. They sent us down to St.
Vincent Hospital where they did an MRI of her brain and found a total of 5
masses. Early that next morning we spoke
with a neurosurgeon about the MRI and Kelly was actually scheduled for brain
surgery the next day providing a chest/body scan came back clear. Well the body CT scan did not come back clear. It showed the largest mass in her upper left
lung and surrounding lymph nodes, a smaller mass in her lower left lung, a mass
on her left adrenal gland (which is above the kidney), and a mass on her left
hip bone. All of this without any sign
or indication that something was wrong until the headaches…or so we
thought. The only other indication we
had was the day after her birthday (April, 22nd) she told me her hip
hurt. I joked with her that she was
getting old, after all she just turned 34 but she also did Zumba 3 days a week
in addition to walking a few miles a day….after we looked at the scan of her
hip it was in the same place that hurt…who would’ve guessed.
After the results of the scans the brain surgery was
scrapped and biopsies were done. They
did two, one from her lung and one from her hip. Basically they took some tissue out of the
masses to get tested to see what it was.
The results came back and they matched, Small Cell Lung Cancer (SCLC). So they told us what type of cancer it was
and said the chemotherapy treatment we want to give you is the one that works
the best most often with this type of cancer….Well that makes sense to us. What follows is the stuff that makes Kelly my
hero….
They immediately take her away to have a Power Port
surgically placed into the right side of her chest to receive her chemo
intravenously (IV). She then starts
chemotherapy and for the next 3 days gets two different types of chemo
medicine, two different types of nausea medicine, steroids, and pain meds
pumped into her in addition to the fluids she is getting for hydration and
precautionary meds for any neurological problems due to the masses on her
brain. She spends almost two weeks in
the hospital and then finally we get to go home! She leaves the hospital with an unscheduled
hair cut (because we are assuming her hair will fall out and in order to donate
to Locks of Love she had to cut it before any chemo treatments), 20 pounds
lighter, she has lost all of her muscle mass in her legs and arms which made it
difficult to walk up stairs or even get up from a crouching position, and
without a lot of memory of what just happened those last two weeks. About 2 weeks later her hair falls out….
She then proceeds to repeat the chemo process for 6
cycles….every 3 weeks for 3 days straight and in that time we see good
progress! All of the masses have shrunk
in size and she is responding pretty good to everything and handling the
mountain of meds well. At times they try
to wean her off the steroids dosage only to have to start all over because of
one thing or another. And the steroids
are the thing she hates the most because they make you “poofy” and cause you to
gain weight in addition to other side effects.
She had a couple different antibiotics to take during certain times
which had their own side effects. And
she had the joys of experience artificial menopause due to the chemo effects.
Of course, the number one question is why are they not doing
any surgery? The answer is simple. To do surgery on a cancer patient the cancer
has to be concealed to one area of the body only. Otherwise if they remove a part of it and the
other areas spread, get worse, or cause problems they cannot treat them because
the body could not handle it and heal at the same time.
Around the 5th cycle of chemo she had noticed
that her hip was starting to bother her again so we had to meet with a
radiologist to discuss what should be done about that. So, she had 6 high doses of radiation on her
hip which she tolerated a lot better than the chemo and the good news with that
is her hip hasn’t been problematic since the radiation treatments. We still talk to the doctors about it, but
the best indication of something being wrong there is any pain or discomfort.
From the beginning of her chemotherapy they told us that the
most treatments they will do with that particular kind of chemo is six because
they haven’t found that it’s beneficial to do more than that and a person’s
body can only take so much…so towards the end of the 6th cycle they
found that the masses had stopped shrinking and that some of the brain masses
had changed. Along with some other
things that were going on, the brain was now the priority. We once again met with our radiologist and
came up with a plan to deal with the brain masses and we were hoping that he
could help with the lung as well….this was our first real big letdown. After getting a PET scan (fully body with
radioactive dye) our radiologist determined that there was still too much
cancer in Kelly’s left lung to effectively radiate it without hurting her more
than helping. Not great to hear but we
understood. His idea was to try and do
more treatment with chemo to try and shrink the lung masses and revisit.
But, we still had the brain to take care of and over the
next two weeks Kelly underwent 14 Full Brain Radiation Treatments. I say full brain because there are two types
of brain radiation, full and targeted area.
We chose the full because of our trust in the doctor and the type of
cancer Kelly has. If we had chosen the
targeted area radiation he would have just radiated the 5 known masses, but if
there were other microscopic cells in the brain, they could have grown and
caused more problems. This way the full
brain covered everything. As you can
imagine, this was not a pleasant experience for Kelly. Especially because she had just gotten off of
the steroids completely for about 2 weeks and had to go back on because of
complications from side effects of the brain radiation. And, some of the side effects will be
permanent…but to quote Kelly: “I would rather forget stuff than have Cancer in
my brain.”
While getting the brain radiation Kelly could not get any
other treatment because as I’ve said, a body can only take so much…After that
was finished we met with our Doctors to figure out the next step. They had suggested, and I’m glad that they
did and admitted to us, that we go see a lung cancer specialist down in Madison
because she would have a better idea about what to do. Her suggestion was for Kelly to enter a trial
study that is comparing two different types of treatments for Small Cell Lung
Cancer. One is a chemotherapy pill that
used to be the go to drug for SCLC and a new pill that is a trial. She had a 50% chance of getting randomly placed
into either arm of the trial. She was
placed into the chemo arm which was fine because it was the next type of chemo
treatment our other doctors were planning on going with. To backtrack a little bit, we had some good
news during the brain radiation and before the start of the trial chemo. Kelly had gone about 2 months without any
treatment on her lungs. Partly because
of the brain radiation and also there is a lot of “red tape” to get through to
be included and “qualify” for a medical trial study. And, during those 2 months she had little to
no growth with her cancer. That told us
that her immune system alone was doing its job and it was one of the advantages
of having youth on her side.
So, in addition to steroids, precautionary anti-seizure
meds, and a multitude of other things she now begins a new chemotherapy. This one is different; it is a pill form that
she takes 5 days in a row every 3 weeks.
She had to document everything she does and experience for the study and
gets rescanned every 2 cycles. Things
seemed to go pretty well and it looked as if the chemo had stopped the
cancer. 4 cycles, 2 scans and everything
stayed stable. Not shrinking, but no new
spots and no growth….And of course we get an unexpected scan and here we are. Not significant growth or change, but enough
to cause problems.
The next step is to get “prequalified” for the trial study
again, which means another MRI, another EKG, more lab tests, and of course
insurance approval. Providing all of
that goes through then they are switching Kelly over to the experimental drug
arm of the study. They will rescan her
again in 6 weeks, providing it’s not necessary before then to check how things
are going. And from what we understand,
she will be the 3rd person in Wisconsin that is taking this new drug
and one of very few in the country. If
for some reason they cannot get her on the trial arm then we are looking at
radiating just the upper mass in her left lung to try and shrink it, but again
the problem with that is it sits above her heart….
So, why the long explanation?
There are a couple reasons…All of what I just explained to
you has happened in 8 ½ months….all of it…Kelly has done it all without
complaint, with extreme determination, with tears, with laughter, with love,
with heartache….she does it for Elizabeth and Mitchell, and me…She just does it
day after day after day….that is what a true hero does.
A couple weeks ago our doctor told us both we were
“remarkable” people. We didn’t know what
to say to that. But we discussed it on
the way home….one of the few great things about going to Madison is I get to
spend 6 hours of alone time with Kelly so we have plenty of time to talk. Throughout all of this we haven’t gotten
angry at our doctors or lost ourselves when we hear the results of scans and
are told no we can’t do that right now because it will hurt more than help….I’m
not saying we won’t at some point get to that…I hope not. But the longer she fights the more we
understand whether we like the answers or not.
Getting angry or disrespectful or second guessing our doctors unless we
are extremely uncomfortable doesn’t help our fight….I know for a fact that they
hear a lot of that, probably most of the time.
Kelly and I make a good team. We
balance each other out…when she is down I’m not and I try to pick her up…when
I’m down she is not and she reminds me to come back up. I tell the doctors the “truth” about how she
is doing which gets me a lot of dirty looks…
We get a lot of suggestions and information from family and
friends and we appreciate all of it…but there are some things that need to be
understood which is another reason why I am writing this. So you can see what she has been through….and
what we are doing and hopefully understand there is only so much that can be
done at one time. I have told a version
of this story so many times that I feel it has become a part of me. And, trust me I have no problem telling it
over and over again because it helps me and it helps you understand. I ramble a lot…once I get rolling with the
story I can’t stop sometimes. And when
people take the time to listen it helps me breathe a little easier, so thank
you!
There are few things that I know for sure….I cannot tell
Kelly that everything will be alright because I honestly have no clue what the
future holds. But I can tell her that we
will figure it out and that is what I do.
I know that I am personally more tired than I have ever been in my life....but it doesn't compare to what she is going through. I know that people don't know what to say...and that's alright because most of the time I don't know what to say either. But I also know that there is so much more to Kelly than lung cancer....and there always will be. I hold onto the belief that the rarity of her cancer will work in our
favor because maybe the treatments that don’t usually work so well with others
will work better for her because she is different. All of our doctors are pleasantly surprised
with how she is doing. Which seems odd
because she has been through hell and it has been a constant struggle these
past 8 ½ months. But, every time the
doctors are happy with her attitude and tolerance of all the meds and
treatment. Which leads me to believe
that most people don’t handle this cancer very well….again, she’s certainly
different. I know that Kelly has a very
complicated extensive stage small cell lung cancer….But there is no reason to
believe that 15 years from now she cannot be one of those volunteers in the
oncology ward telling the new patients that she beat it. And with every hurdle or bump in the
process….she will say “What’s the next step?”
I will never make her do anything she doesn’t want to do…but I know for
sure that Kelly WILL NEVER GIVE UP.
That is why, My Wife Is My Hero.
Mike
