I failed to post this prior to April, but didn't want to miss the opportunity to share share survivorship from February 2014 to April 2015. Thank you for your continuing prayers and support. Life cannot get any better (and CRAZY) then this :).
OB What!?!?!
That’s right. As soon
as my life was looking normal, I started to feel very tired, nauseous, and
achy- all signs of a recurrence. So I
starting researching the Gerson diet, exercises, anything I could do before
crying to my doctor about feeling ‘crappy.’
After changing my diet, and other lifestyle modifications, I starting
gaining weight… but only in my midsection – oh crap ovarian cancer, breast
cancer’s secret sister. I traced my
steps back and remembered that I stopped taking my probiotic a couple months
back, and determined that my ecosystem was off (until that point, I’d never
stopped taking it since my terrible GI issues as a side effect of chemo). My next step was to pick up a probiotic and
start the regime once again. The night
before the epic trip to Target, I squeezed all my belly fat together and told Andrew
that I was so annoyed, after increasing my level of exercise and improving
diet, I was gaining weight! He made this
‘haha’ sarcastic statement that maybe I was pregnant. I laughed it off… I’d been ‘menopausal’ for
months as a side effect of chemo. I
walked through Target to the probiotic section, found my treasure, and headed
to the checkout lanes. On the way, I
passed an end cap of pregnancy test and thought I’d pick one up just for peace
of mind. Plus, who can resist a
pregnancy test sale? I laughed as I
checked out and thinking, if my test is positive, I won’t need the probiotics –
hahaha! Two tests later, I
self-diagnosed myself with a thyroid issue, which (in my head) was causing my
hormone levels to jump resulting in 2 positive tests. SO I called my oncologist to determine the
next steps to schedule an appointment with (the best) Endocrinologist. Instead of a recommendation transferred me to
my OBGYN. While on the phone with the
OB, I IM’d Andrew and asked when he had 2 hours open that week, so we can get an
appointment scheduled – thinking I had to go through a prelim assessment with
my OBGYN. While multi-tasking, trying to
describe my symptoms to the OBGYN scheduler, and get a date/time that would
work for my and Andrew’s schedule, not giving Andrew the news through a Skype
became difficult. My goal was not to
shock him through IM, but after 3 kids and 7 years of marriage, I finally took
a picture of the pregnancy tests, and texted it to him. Apparently, his meeting became very
unproductive from that point on.
Before even seeing the OBGYN, the nurse escorted us to the
ultrasound room and BOOM- there it was.
10 weeks pregnant – shocker!
During my 18 months of chemo and radiation treatment, I was probably
asked if I was planning to get pregnant after treatment was over, maybe at
least once a month. Apparently, you
should wait at least a year after my kind of treatment, AND most likely it
would not be successful, even with the help of a team of fertility
doctors. I’d day that this little guy is
a true miracle.
I’m blessed to say that we are officially at 30 weeks, and
the baby and I are healthy ultrasound and overall progress. That isn’t to say that this pregnancy has
been easy or there are not risks, but I am doing every I can to stay healthy
for the baby – everyday workouts, clean eating, 8 hours of sleep, and staying
on top of appointments while managing a full time job, 3 kids, a husband, 2
animals, and a household + remodeling the master bath (I give most credit to
Andrew, but I help with whatever I can).
So how does survivorship
+ pregnancy effect my health status?
Reconstruction - or lack there of...
In my last post, I asked for good fortune and prayers for a
successful surgery – atlas the implants!
Well, what I envisioned didn’t go as planned, but I really think
everything is exactly how it should be…
- February 2, 2014 – Implants placed.
- February 17, 2014 – Flew to NYC for my first day on the new job – whoo!
- March 3, 2014 – Surgery to repair the incision and save the implant. I was already at the smallest implant size and my radiated skin just was not flexing and simply would not heal. Outcome- PS said that I will be lucky to get 6 months with implants due to the ‘poor quality of radiated skin’ and inability to heal.
- March 24, 2014 - Implant fail, removed both implants. Done.
Basically, I had 3 surgeries to place, preserve, and then
remove the implants. So, as you have
probably figured out, I am now completely flat as jack. And now that I am pregnant, it gets even
better, I look like ET – flat chest with a big ‘ol belly. You just cannot make this $hit up. In fact, I would go further, and describe my
chest as indentions of what ‘was’ before.
I am a true believer that the body is meant to be symmetrical, so once I
knew that one implant had to be removed, I requested to remove both. This way, I could go flat or at least have matching
shape/size prosthetics if I chose to wear them.
My preference was to go completely flat, despite being able to see my
chest indentions when wearing a t-shirt.
All natural, all the time. That
plan lasted a whole 3 months, then my PS and other doctors noticed bruising on
my chest. No padding = bruising = less
healing = difficult FLAP if I choose to have surgery later. Makes sense.
I have no ‘pecks’ to protect my chest wall. My doctors have all recommended that I wear
some form of protection (aka prosthetics) for protection - especially with the random blows from kids and babies. That said, I
have a pair of really expensive (thank you insurance) and beautiful silicone prosthetics
that I never wear because they (feel like they) are 900 lbs each. To appease my chest wall situation, I found
some sports bras at Kohls and Macy’s that allow for inserting these tiny cloth/cotton
‘prosthetics’ (which are sold as ‘temporaries’ when you purchase mastectomy
bra’s and cami’s). Nothing big or
appealing, they simply serve their purpose. I work from home, and any parent at
my kids school would vouch that any effort above brushing my teeth and getting
out of PJ’s and into clothes is a success for me with it comes to maintenance, so
having to put on ‘my boobs’ every day is an inconvenience, but then again, so
is a bra right J?
For all the ladies who have thought about an ‘enhancement,’
I’ll give you the scoop on what it is like to have implants… Not exactly what I
expected, but before I explain, I will say that during my 2 month implant tenure,
my chest never truly healed until they were long gone. That said, possibly they get more comfortable
when your body is used to the implants AND your chest has healed?? The best way to describe the feeling of an
implant, tucked under your muscle & skin inside your chest, is a plastic ‘ziploc-type’
pocket full of cold pudding stuffed under the skin. They took a while to adjust from 1 position to
the next, like GAK. When I sat up from
laying down, it took about 5 seconds to go from pancakes to teardrops. And when you touched the skin, they were
freezing cold. They were soft, I
think. I never got to really have a
‘good feel’ since it always hurt after surgery. At least I can check breast implants off my
bucket list.
I did meet with the only doctor in KC who does TUG and PAP FLAP
surgeries. As of April 2014, she had
done 3 PAPs total- wow. These surgeries
entail removing tissue from the thighs and upper thighs located under the bum
and making them into breasts. The TUG
involves muscle, but I refuse to allow donate muscle from my legs. And no, I cannot take fatty tissue donations,
everything has to be my own. The surgery
is about 12-14 hours and recovery is 6 weeks.
I’d rather not put my body through all that, and risk a deformed bum to
go along with my indented chest if everything fails J. If I were to do something like that, I think
I’d take 6 months off from working out, eat a ton of crap and gain weight to do
the DIEP flap (stomach lipo). OR if
anyone knows someone who can take a sample of my fatty tissue and grow more in
some lab, I would prefer that method. I
joke with Andrew that if I were to need a C-section, I would just ask the
doctors to get rid of the pregnancy weight in my stomach and thighs, and make
me some boobs right then and there.
Recover all at once. However I
don’t think that route would afford a positive bonding experience with baby J. No decisions to date, just enjoying ‘health.’ I want to eventually do something more permanent, the prosthetic thing kind of sucks, but waiting for the kids to be older and praying for better surgical options become available.
Cardiology
I was one of Dr. Porters 1st Herceptin patients
to get completely off Coreg. No more
heart meds. My last echo displayed my
ejection fraction (EF) at a healthy 65%. He released me from his care in August
2014.
Upon pregnancy, I get an echo at the end of each trimester
to ensure the excess fluid and blood from pregnancy is not negatively impacting
my hearts. So far, so good. However, the most dangerous time is 24-72
hours after delivery. The concern is
that my heart may ‘freak out’ with the rapid drop in fluid/blood.
Neurology
After a year of basically no treatment but a carpal tunnel
brace worn at work and at night + a wonderful ergo keyboard, there has been no
signs of improvement. In fact, I am
experiencing further deterioration of my left hand and arm muscle and feeling,
etc. At my last appointment in August,
my neurologist basically told me that if I don’t want to take shots, I can come
back in January - if I wanted to.
Needless to say, I opted for a new neurologist. At KU, you have to have a referral from your
existing neurologist in order to see a new neurologist within the same
practice. That conversation was a little
awkward, but needed to be done to get the treatment I need to get better. When I got in to see Dr. Dick, he did a full
assessment and his remark was that I certainly had more then a mild case of
carpal tunnel going on. It is nice to
hear that I’m not a complete hypochondriac.
That said, after an EMG (where they hook you up to a machine to measure
neurological activity from electric shock and needle sticking) and MRI (which
is completely safe while pregnant), the conclusion is that I have Brachial
Plexopathy – nerve damage of the radial, ulnar, and radial nerve, which was
likely caused by radiation. I’m also
experiencing minor lymphedema from pregnancy, which is exacerbating the issue because the swelling is choking the nerves in my neck, shoulder, arm, and hands. Right now, I have several print
outs of PT exercises that I do, and I try to get in for lymphedema massages
when I can (I do them myself at least 2 times per day). As for how bad it can get, Google scares me,
however my Neurologist seems to think that it will not get worse and maybe even
improve once I’ve delivered and the lymphedema is gone. I pray he is correct.
Oncology
So far, so good. In
the spring of 2014, I had some pain in my hips and had a full body bone scan
and MRI to rule out any recurrences. Everything
came back clear. I had my last 3-month
appointment in October, and then I will see the oncologist every 6 months until
5 years out from my diagnosis date- July 2017.
Scary to think about.
I had the benefit of having Dr. Carol J Fabian as my
oncologist while actively in treatment and nearly 18 months into remission – 2
years total. I was one of the last 10 (or
so) active cases she ever took, lucky girl!
The woman saved my life. Dr.
Fabian is in her 70s and has finally began the first phase of retirement, which
means I got cut. I am now under the care
of her NP, Lori Ranallo – Fabian’s NP who was highly involved in my care to
health. Lori is the first NP not work ‘under’
a Physician at KU, even though technically, she is following Fabian’s plan of
treatment. If I do have a recurrence,
she would refer me to an Onc MD. Dr.
Fabian is now following her passion for the next year before full
retirement. Her passion- high risk and
prevention. Everything she has
accomplished and will benefits all women, including our daughters. Alright Fabian- you have one more year to
find the breast cancer vaccination, or at least a cure J. Thank
you for your dedication to breast cancer research, prevention, and saving the
lives of thousands of survivors.
Hopefully my next post will have baby pictures and a good
report of a happy and healthy family.
Thank you for your continued prayers and support.
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