I am
proud to say that I have made it through 2 of my 4 cycles of Epirubicin and
Cytoxan. My first two cycles were rougher then I thought they would
be. Think of Ozzie Osborn, the mumbles, fumbling around, and lack of
ability to make meaningful conversation, this was me during recovery week. For this type of recovery, I stay homebound for
about a week after the chemo treatment. During recovery, I cannot drive,
so when I do get out, it is only for doctors appointments, PT, or
whatever minimal activity my body could handle. During my first cycle, I
was very exhausted and nauseous, after leaving the same voicemails for my
doctor, asking the same questions, my medical team finally decided to change up
my anti-nausea medications and introduce me to a new drug for my second cycle-
Amen to Emend! My second cycle was much better, I had more energy,
clarity, and less nausea…..Thank goodness! Unfortunately, thanks to
insurance, I am only allowed 2 pills per cycle, so I can have relief on day 2
and 3 after chemo. I could use more, but I will take what I can get, anything
to not be an Ozzie. At my doctor appointment last Wednesday, the plan of
treatment changed. My lab results came back with very low levels of red
and white blood cells, platelets, and other counts that are important to
maintaining health during this time. My doctor said that we either need
to reduce the dose of chemo, or give my body another week in between cycles to
help my numbers recover. Leaving no doubt that the residual cancer will
be killed, she opted to give me an extra week to recover. I am relieved. My body feels like it is in the condition it
was in after my 5th cycle of chemo in December. My doctor said
that it is harder to recover from chemo when your body has already gone through
so many cycles already, even if I did have a few months to recover. I was
not sure if this would happen since I had such good luck with chemo to date, but
after this cycle my hair is coming out rather quickly and I have evidence all
over my pillow to prove it. At least the chemo has held out for warm
weather. The chemo is causing a lot of issues with indigestion and heart
burn, even up to 8 and 9 days post chemo. To fight that, I am earned
myself 2 more medications- Protonix and Carafate, both will help my level of
comfort. This I am VERY excited about! My next chemo treatments are
scheduled for April 15th (my
mom’s birthday) and May 6th.
The end of chemo is within the next month- hooray!
All of my chemo to-date has been via IV. The Epiribicin is delivered through 3 injections. This is a picture of the injections-![]()
All of my chemo to-date has been via IV. The Epiribicin is delivered through 3 injections. This is a picture of the injections-
If you
have been following my blog, you know that I have written about many tests that
were discussed, and were to take place on my original biopsy from NKCH. Many of you have asked the results of those
tests and to date, I was unable to share anything because I myself was
waiting. Today I have all but a few of those
results, but before I share them I would like to share a side of my journey
that has provided me a true education in healthcare and a new personal
focus. For over 5 months I waited for
my test results, believing that delay was coming to an end and I would have the
results soon. My doctors had originally
thought this was being taken care of, only to find out that NKCH hospital still
hadn’t sent my original biopsy to Caris labs in California for testing. Once this was discovered, it did not take
long for push KU to request that Caris, the genetic testing company, contact NCKH
to request the original biopsy tumor. No
matter how you dissect it (pardon the play on words) healthcare is a business, and like in any
business, with good comes bad. Politics
that I will never have visibility to are present, but to me, the patient, this
is my life and the sense of urgency needs to be present. Putting all that
behind me. These tests, in short
dissected the DNA of my tumor to help determine which treatments have the
highest probability to kill my cancer. With this type of information,
doctors can practice what is called personalized medicine. Developing a
plan of treatment that is tailored to an individual’s cancer genetic makeup
will ensure treatment will work, prior to even starting it. Despite this
information, what I have come to find out is the insurance company plays a
large role (in my opinion too large of a role) in what the final plan of treatment
will be. In the end, it comes down to
money, and if insurance won’t pay, doctors won’t do it. To be fair, good doctors do everything they
can to justify the treatments that their patents will have positive results
from, I am lucky that my doctor has put forth effort to do so for my case. Cancer
treatments are not in dollar amounts that you can just tap your savings for, or
put on a credit card, we are talking hundreds of thousands of dollars. This can all be very frustrating. As a patient, you spend countless hours
researching, and picking the right team to provide your care, only to have it
left up to a panel of doctors (probably not any of the top oncologists) who
reside within an insurance company that use actuary tables to determine your
care. Insurance pays the majority of the
bill, and if they don’t deem it essential treatment, the ultimate decision of whether
you get ‘personalized’ treatment is likely not going to happen. When I was first diagnosed, I was in the care
of NCKH. I had 3 babies there, and to this point in my adult life, have
received all of my healthcare needs through that hospital system. I have
been VERY happy with them, and I would use that hospital for healthcare needs again. But let’s be clear….. they are not a cancer
center. That is why I found a medical team at KU Med that had access to
clinical trials, the best doctors, and all the resources I needed under 1
roof. When I thanked my (biopsy) surgeon from NKCH and said that I would
likely identify a team from KU Med or St. Luke’s Health System, he looked at me
like I was crazy. He said that no matter where I went for treatment, I would
receive what is called the standard of care. This is the standard plan of
treatment that all cancer patients get based on their surgical pathology report
which contains information such as the type of cancer you have (I had 2 types-
invasive ductal carcinoma and DCIS), receptors (I was HER+), pathological
staging, tumor size, and the list goes on. To me, that didn’t matter, I
made up my mind, I was not staying at NKCH. When I went to KU Med, my
doctor looked over my pathology report, did an assessment, went over family
history, etc., and guess what? I got the standard of care. Of
course, she didn’t give me a laminated menu, and circling the entrée that she
was ordering for me to cure cancer, it seemed specific to my case. Doctors, accrediting organizations, and
research and development teams measure and track which treatment plans work
best for ‘like’ groups of patients. Those ‘like’ group of patients get
the standard of care- the same treatment plan because it has been proven to be
effective on the majority. When I first met my doctor, she said I have a
very good prognosis, and that it is unusual and rare for a person in my health
and age to be diagnosed with breast cancer, let alone HER+. Take a look
at the risk factors, age being the most obvious, I meet none of those
criteria. That said, why am I getting the same treatment as the typical
breast cancer patient? Well, I wish that those 30 tests were done on my
tumor (from the excisional biopsy) when I was first diagnosed! The
results would have proven that the standard of care did not apply to me and my
‘case.’ One test ran on my tumor determined that the 6 cycles of wonderful
Taxotere chemotherapy was virtually ineffective in killing my cancer (based on
my tumor’s DNA makeup), and likely the reason that I has residual cancer cells
in my lymph nodes. Yes, the extensive testing is costly, but to give you
an idea of how much chemo costs, each time I received chemo, I got a bill for
$45K. I received 14 treatments during my 6 cycles of Taxotere/
Carboplatin, and Herceptin. And now,
after all the tests, chemo, surgeries, etc., I have to do more chemo, take more
medications, and now radiation, which, by the way, can cause a different type
of cancer in the future. I am not going to dwell in the past, it is what
it is. As for the future, there is a drug called lapatnib that my doctor
thinks I would benefit from. It works with Herceptin (the cell division
stopper- if the cell does not divide, it eventually dies) which works from the
outside of the cell, lapatnib works from the inside of the cell. The
problem is, it is not standard of care, and there is no way anyone could afford
the pill out of pocket. We are awaiting 3 more tests from the testing
company in California (I’ve put my blog on hold waiting for these results, but
have decided to add those results to my next blog). If the one of the
test reveals that the tumor requires lapatnib to be killed, it will be easier
to justify to insurance. If not, maybe I do not need it, but I would
still greatly benefit from having it- I am 30 years old and have the
opportunity to put this behind me for good. If I cannot get the drug, I
have 2 options. The first would be to go to my insurance company and
appeal the claim. That could take months, I need the pill starting in
June when I begin my Herceptin regime again. The second option is to
contact the company that makes lapatnib and ask for the pill for free or at a substancial
discount. And who knows, maybe I do not need it?
The
first thing I learned about cancer is that every cancer case is unique. I
can see how the standard of care would apply in multiply aspects of healthcare,
but not cancer. In conversations with my doctor, research and development
is becoming so advanced in cancer, it IS POSSIBLE to delivery personal medicine
to each cancer case. As research and development is advancing, the
insurance companies are way behind in this movement. Basically, it will
take some kind of government intervention (similar to requiring that consumers
with preexisting conditions cannot be denied coverage) to make this
happen. All this fascinates me, and the sad part is that there are people
dying every day because of this thing we call standard of care.
I did
meet my Radiation Oncologist. Unfortunately, I met her the day after chemo
during my first cycle, so I do not remember much of that appointment.
Thank goodness for Andrew, he was able to ask questions and take good
notes. The next step is for me to get a CAT Scan and some nice tattoos to
mark where I will be getting Radiation. When I was in high school, I
threatened my parents that I would get a tattoo, just for fun. Honestly,
I have never had any desire for a tattoo, just not my thing. Well, my dad
paid me $100 to not get a tattoo ever, as in, the rest of my life. To
date, I have held true to my part of the deal. When I mentioned to my dad
that I was going to have to get all inked up, he was kind enough to let me keep
my $100. I don’t think Jimmy and Katie will get the same bail out as I
did J.
The radiation will effect my expander expansion process. All this
expander expansion is preparing my skin and muscle for implants later, possibly
as late as next February. When I met with my plastic surgeon, we
discussed several important topics. I have finally met the minimum
implant size, however he recommends that I go much larger partially because I
need to plan for shrinkage during radiation, but this will allow me more
options in the future. As part of the expansion process, I am getting my
expanders injected with saline each week.
This is becoming more and more painful, the skin and muscles are being
stretched and it takes a few days for the pain and discomfort to go away. I am scheduled to have my ‘radiation planning
session’ on May 22. By that date, I have to be fully expanded on my right
breast because it will be radiated on. At this point in my blog, I am
posting a disclaimer (for the 1st time) about the remainder of this
paragraph. If you are not interested in
or think that it may be a little too much information, learning about how the
expansion process interferes with radiation, and how my medical team mitigates
that, skip to the next paragraph J. I
will be fully expanded on each side by the middle of May, BUT, just day(s)
before 5/22, I will be fully drained on my right side. Apparently the
radiation rays will be shot at me from multiple directions and my right breast (actually,
it is an expander at this point) will be in the way for radiation. Holy
cow, yes, this means I will be flat on my right and fully expanded on my
left. This is hilarious to me, I would have never thought I’d ever have
this problem in my life. The good news is that when you purchase
mastectomy bras, prosthetic pads are included, glad I didn’t toss those!
I do not know which is more awkward, actually wearing the prosthetic or walking
around fully expanded on one side and flat on the other. Um, prosthetics
please- LMAO! Better then tissue I suppose J. Timing
is perfect of course, swimsuit season 2013 will be the best yet. Once
radiation is over (it will last 6 weeks), I will get re-expanded on my right
side. The pain we do through…
I have
had high blood pressure ever since I started treatment last August. The
high blood pressure has not lowered at all, not even for the brief couple of
months when I was not receiving chemo or Herceptin. My oncologist has
referred me to see a Cardiologist to see if there has been any permanent damage
to my heart. My Cardiologist may also possibly identify the need to
introduce new medications if my levels are too abnormal any an intervention is
needed. So much for all those high school and college sports, so much for
working out during pregnancy to keep my heart healthy, so much for not eating a
lot of delicious steak. I wouldn’t change a thing, and who knows, may all
that good practice is keeping my heart within a ‘healthy’ range during this
trying time. After encouragement from my PT and oncologist, I started
doing the elliptical last week. Monday I did 5 minutes and Tuesday I did
8 minutes, just a small step down from the Insanity program. Sad to say,
but my heart felt like it was going to pound out of my chest. At my
doctors appointment last Wednesday, my doctor recommended that I just walk
briskly on the treadmill until I get to the Cardiologist on 4/15. I am
very eager to just get moving again, and I am yearning to sweat and feel the
need to catch my breath after a good cardio workout, it gives me energy and
hope. Working out has always been my outlet, my personal time, I miss it
dearly.
Another
new group of doctors I get to see 2-3 times a week are my Physical Therapy (PT)
team. Since I had my axillary dissection (one of my procedures in the OR
along with my mastectomy), I have had issues fully extending my left arm, as
well as range of motion, flexibility, and building back my strength in both
arms. The PT has helped a lot and I am very gracious for the opportunity
to get back to normal. I start Radiation in May, that means that my skin
will become very tender, my muscle and skin will likely shrink up a bit, and
the muscle will harden (the expanders are sown into and under my muscle, that
is where the implants will when my body is ready- that is, if implants work…
cross your fingers). I am in a race against time because I need to get my
range of motion, strength, flexibility back (from a PT perspective), as well as
fully expanded out from an expander perspective all within a short period of
time. All these appointments have added a lot to my already busy
schedule, including a full time job, but I have to keep reminding me that it
will ALL be worth it in the long run. It
will only get harder post radiation if I do not make the investment
now. Each time I go in, I have am having positive measurable
results, so I am happy that my time investment in the PT office, home, and work
are paying off. One challenge that I am having is that each time I get expanded,
my chest muscles are being stretched and trying to gain flexibility is a
challenge when your muscles are already trying to recover from expander
stretching- ouch! One thing I do love
about PT are the lymphedema massages (I’ve only gotten 2), oh they are
amazing. I even brought Andrew to one of my appointments so he could
learn how to perform them on me. A massage is great, but when someone
else is doing the massages, it is oh so much
better!
I do
need to give a shout out of accolades of praise to my family. First, I
think I missed this in my last blog, but my sister came in for 2 weeks after my
mastectomy and stayed with my family.
She was our Mr. Belvedere, babysitter, nurse, and friend. I wish she could stick around KC
forever!! Also, my last 2 cycles have
been really tough, especially not being able to drive myself or the kids
anywhere. My mother in law, dad, and brother have been amazing- taking
off work to get me to my doctors appointments, helping with rides for the kids
to and from school, bringing by dinner, you name it. This whole
experience has been very humbling and a huge inconvenience for me, but more
importantly others. I am so blessed to have the family, friends, and
co-workers there to support me, and be so happy to help whenever they
can. Another thing, congrats to my amazing husband for earning a new job
at a company that offers a wealth of potential. He is such a hardworking
and smart man, he deserves this opportunity, I am so proud of him.
Despite all ‘this’ he has still come out ahead and is helping me fight this all
the way.
And last, breast cancer is becoming more and more
common amongst the younger population. And worse, breast cancer is harder
to detect in younger women, and usually much more aggressive. Please, if
you have any question or concerns regarding your breasts, just go in for an
appointment. Ask for an ultrasound. That is the best way to ensure
that you are getting the first round of defense from this terrible disease,
next step is biopsy if it is recommended. Don’t be afraid, knowing it is
there and doing nothing about it will get you nowhere but a headache and
dissatisfaction, or worse. Early
detection is key. You are your own health advocate, kick and scream if
you feel that something is wrong. Take care of your body, it is the only
one you get and there are no do-overs.
Have a great April/ May. Thank you ALL for your support!
