Once chemo was over, my life has flown both personally,
professionally, and medically. Every
time I sat down to write a blog, I had so much to catch up on, I found myself
having to change tenses and modify timelines due to the lag from when I first
wrote it, to when it would be posted… so this is my attempt at giving an
accurate update with ALL the progressions since May. Thanks for bearing with me and I hope it is
helpful. If I don’t keep your attention
to the end, thank you for your prayers and support!!
The End of Chemo
My chemo treatments are finally over. May 6th was my final
treatment. After calling my doctor and
stating I was going to run my face into a brick wall, then poke pencils in my
eyes (to distract the agony of heartburn), she finally told me to try an OTC
probiotic in addition to the Protonix and Carafate. Though the introduction and discontinuation
of a probiotic was a ‘learning experience,’ wow, the little addition in
medication made a real difference. It
did not completely alleviate the heartburn, but made it tolerable and shorter
lived. Glad I can check 10 cycles/ 18
treatments of chemo off the bucket list.
Me on my last day of chemo-
Carrying a Real Purse (not Rx Cabinet)
3 weeks after my last chemotherapy I was able to say good-bye to SEVERAL medications. It is nice to not have haul so many medications around with me, not to mention, remembering to take every pill at certain times each day. I perfer the 'all nautral' approach anyways, so this gives me the feeling of 'purity.' AND, I did not get sick once I got all the 'anit' meds- anti-viral, anti-fungal..., etc. This pictures shows the comparison to the medications I have to take now versus the medications I had to take from August 2012 through May 2013:
Radiation
On May 22nd I met with my Radiation Oncologist
and her team to for the Radiation planning session. The entire planning process took about 2
hours. The first step was getting
drained to 130 cc’s (from 400 cc’s) on my right side so the radiation beams
could shoot me from multiple angles, and only hit the primary radiation spots
so nothing would be in the way. The
doctors and nurses took a sharpie to my skin and drew ‘x’s to help the nurses
line me up on the table for each radiation treatment. This ensured that I received radiation in the
perfect locations and avoided my heart, lungs, and other areas that we wanted
radiation free. Then they placed clear
stickers over those markings to protect them from fading or smearing. I also got some tiny tattoos just in case the
stickers failed.
I was supposed to have 6 weeks of radiation. I ended up not
enduring the last week of treatment called the ‘boost’ week (apparently, this
is the toughest week). By week 5, my
skin had gone through the full cycle of colors- pink to red to purple to black
to gray, and then peeled off. In many
spots, the skin cracked open and would leak puss (yuck!). To prevent, mitigate, and alleviate the skin
problems, I used Aquaphor and Miaderm lotion, tea wraps, and ‘free-chested-it’
as much as possible. My doctors
recommended using Aquaphor and Miaderm, both worked pretty well if you are able
to slather yourself 3-4 times per day.
The Aquaphor was petroleum based and ruined my shirts, so I preferred
Miaderm, which was a little more expensive, but paid off when compared to the
cost of a new wardrobe J. It hurt to take clothes on and off, so I
mostly wore t-shirts anyways.
This is a picture of my skin (7/8/13):
So what is radiation like?
I started by changing into a button down top, then was escorted back to
the radiation room. The facility
literally looked like the movies, there are hazard signs on the wall, thick
doors, and the smell of ‘sterile.’ The
room was freezing, so I always brought my warm blanket and stocking cap from
home to keep me warm. Once I laid down
on the table and got situated, I placed my left arm (the breast cancer side of
the body) in an arm stirrup, placed my head in a head stirrup, and kept my head
turned looking upward and to the right side to avoid radiating my neck, jaw,
and face. During treatment, the
Radiation nurses left and communicated with me through an intercom system. They told me when to take deep breaths and hold
and when to exhale, so much for a relaxing nap?!?! I only had to hold my breath for about 20-30
seconds each time, but sometimes it felt like forever. Just when I thought I couldn’t hold any
longer, I would hear ‘and breath.’ Again,
all the breath holding was to ensures that my heart, lungs, and other vital
organs were not fried. There are several
position that the machine goes through as I got radiated. After I finished each day, I hopped off of
the table, got buttoned up, walked to the changing room, lubed up on my
lotions, carefully put my clothes back on, and then head to work.
Several people said that I would breeze through radiation,
but I wouldn’t say that is was that easy.
The logistics of being a working mom played a key role in the amount of
time invested each day. Radiation is 5
days a week, so myself and the kids would leave the house (north of the river)
around 7:00. I would drop the kids off
at Cerner’s Montessori school right by work, which is by the Grandview
triangle. Then, I would drive all the
way to KU Med for my 9:30 appointment.
Normally I got there early so I could catch up on the work while waiting
for radiation. Each treatment lasted about 30 minutes. Then I returned to work…. worked… picked up
the kids, drove home, and repeated- for 5 weeks straight. At first, I thought I was going to lose my
mind. After a while, the drive, logistics,
and time investment didn’t bother me. I
was still in the ‘cancer is an inconvenience’ mode, and for my final treatment
stretch, it forced me into thinking about the reality of what other cancer
patients have to go through- sometimes until they lose their fight. And it isn’t just cancer patients, everyone
had their personal battles. After going
to radiation at the same time each day, and running into the same people each
day, I stopped hiding behind the computer, and got to know the other patients
and their families. I met some amazing
people, each with individual stories about their life, families, jobs, and of
course, cancer story. My daily commute
was down Ward Parkway. It felt like a
whiplash of extremes every day. Lifestyles
of the rich and famous (so we perceive)- what we all strive for each day...
more more and more of whatever it is we want, and it is ironic that will never
be enough. Then going to the cancer
center and seeing those who are just trying to hang on to life, nothing
more. Their caregivers, just trying to
help their loved ones through their battle.
This entire experience has changed my perspective drastically. I have treated my cancer as an inconvenience,
I am so blessed to have survived. I am
still fighting, but remembering the faces of those I have met along the way,
will serve as a reminder of the true beauty in this world, none of which are
material. I will always have a different
perspective on life, and I am blessed to have survived.
On the last day of Radiation you get to ring the bell. Every time I heard/ saw another patient ring the bell, it gave me chills becuase I knew what it meant. I still get chills when I hear a bell ring. These are my Radiation Nurses (they were awesome!!):
Lapatinib
Andrew and I met with my oncologist to discuss the
Lapatinib (Tykerb®). Because it is a
chemical therapy, it is called chemotherapy.
Tykerb works with Herceptin to block cancer cells from dividing and
metastasizing in other parts of my body through the lymph system and/or blood
stream. While Herceptin blocks the
divide from the outside of the cell, Tykerb works from the inside (that is the
easiest way to explain it). In previous
blogs, I mentioned that insurance may not pay for this drug since it is not
considered the standard of care. I am
pleased to say that they covered a portion of it. In total, with insurance, Tykerb will end up
costing us around $400 per month from August through November (when I finish
Herceptin). As of this week, I began
this ‘chemotherapy,’ starting with 3 pills per day, and will be jumping to 4
quickly, once my body can tolerate it.
There are several side effects, most commonly fatigue, bloating,
acne/rash, heart refraction reduction, and GI issues- hopefully nothing
compared to the ‘real’ chemotherapy I have gone through. As usual, there are only predictions on how
my body will react. I pray that I will
do fine compared to everything I have gone through to date. Because both the Tykerb and Herceptin can
damage my heart, I will be getting frequent echocardiograms to detect early
signs of heart issues for intervention.
In terms of other prevention, the pathology team will be checking for
markers in my blood to that indicate cancer.
My doctor says that I will be lucky if I get one scan per year with
recent changes to payor requirements- yikes! Update on Reconstruction
I met with my Plastic Surgeon to assess the effects of radiation on my skin and next steps. We will continue with the original plan (this is good), to refill the right side quickly and allow for 6 months of expanders post radiation, prior to surgery for implants. This surgery will likely take place in January. I am hoping and praying that I can have my port de-installed at that time as well. This is so exciting- the end of IV’s!!! I will continue to be pricked and prodded for years to come, but at least I don’t have to worry about the port breaking or moving on accident through wrestling matches, picking up or holding my kids, and of course, sweet Ava loves to pinch it in attempt to pick it out of my chest (it hurts). Another positive, Ava has been falling asleep on my chest the past few evenings (poor kid has allergies), she has not done this since my surgery in February. It has been amazing, as us mom’s know, this wonderful stage ends so quickly, so we have to soak up all we can get, while we can.
Cancer- The Gift that Keeps On Giving- The Dental Nightmare
Apparently dry mouth, chemicals, and not brushing before
daytime naps cause dental issues (duh).
I’ll admit, I am a ‘1-2 (sometimes none) cavity a year’ type of brusher,
but I was surprised when my dentist said that I had 7 cavities, 1 crown, and
1-2 root canals. Yikes! I have spent the past 4 months getting a
dental make-over. Maybe I should have
just considered dentures at this point??
I am still in the process of getting all the dental work done, but I
will NOT be celebrating with anything containing sugar once this is all behind
me.
Running the Family
Ragged with FUN
I am still lacking in the normal ‘Jen’ energy level, but
compared to a year of how I felt during chemo, surgeries, and radiation- I feel
great! I think that the family may be on
fun overload this summer, but I cannot help myself, it feels so great to be
able to go to Target and run errands, take a day trip, catch up on the house,
and get in a good workout without needing a 5 hour nap to recuperate. Not that I need an excuse, but I really feel
bad that my family has had to miss out on experiencing activities around the
city, birthday parties, and normal everyday movement due to my lack of energy
and attempts to keep 3 kids under the age of 4 away from unnecessary germ
exposure. We have had a ton of fun this
summer, and it is about to get crazy if I continue to feel good. Andrew and I even ran our first Race for the Cure last week (and landed with a 26 minute time too)!!Race for the Cure- Survivor Pavilion (sorry KU Med- you know you are my favorite):
At this point, I know that my hair will return- yay! Today, it looks like I shaved my head for the summer. I get a lot of comments made to me like, 'I could never have the guts to cut my hair that short, not many people can pull that hair cut off- it looks great, or the usual (normally from a child), you have a boy hair cut.' I am hoping that in the next few months it will look like I tried for this hair cut, but for now, I am loving having a ful head of thick hair (and it is not gray!).
In Final (for now)
I have had so many scary points in the past year, but I am so proud of my hard work and determination to live life throughout this difficult time. I have still been committed to my kids, family, and work this entire time. A few months ago, at a doctors appointment, my Nurse Practitioner asked if I would be interested in information about attending a support group, etc. I looked at her like she was crazy! Why would I need a support group now? I have spent all my time and energy keeping my life normal, which is what I committed to when I was diagnosed. The only breast cancer community interaction I have had, are a few cancer patients/survivors that I know, who I have met with or spoken to 1x1 over the past several months. My NP said that most cancer patients have a hard time ‘going back into society.’ It wasn’t until Radiation that I understood how the cancer lifestyle (appointments, tests/ procedures, surgeries, chemo, radiation, etc.) can end up being how you define yourself. At times it was hard, but I am glad that continued to treat cancer as my inconvenience, and did my best to keep life as normal as possible- remained working, still kept up with housework, did not forfeit parenting or spousal efforts, etc. I never saw all that as a choice, even when I could barely keep my eyes open, I kept striving for whatever the goal was. I guess that others do let it consume them and give up. While I was going through cancer, it felt like I was never doing enough, despite every effort gave. Looking back, I am proud of myself, my family, and the amazing friends I have. This does not discount ALL the meals, gift cards, and friends/ family who volunteered to take the kids to go do something fun, so Andrew and I can rest or simply catch up. That is probably the largest contributing factor to my ability to treat this as an inconvenience. All I can say is THANK YOU to EVERYONE. All the thoughts, prayers, support (in multiple ways) has lifted my spirits and helped me remember that the power of God and his amazing children who have been so helpful. Not everyone is able to beat cancer. I pray that this is my only rodeo for me. I just pray, pray, pray- as hard as I can, but, at the end of the day, the possibility of this entering back into my life is very real. So, I just take a deep breath, smile, count my blessings, and most importantly, keep crossing off items on my ENORMOUS bucket list, that I have only started to create over the past year of my life. Whether you have cancer or not, life can be taken in the blink of an eye. Don’t live carelessly, but live meaningfully, love passionatly, and do not be afraid to stand up and make a difference.
