Is That Light I See?

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 6^th 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 22^nd 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. 

 

Some pictures of the radiation facility (I used the True Beam):

 

 

 

 

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):


 
The Hair 
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. 

Full Swing Ahead

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 5^th 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 15^th (my mom’s birthday) and May 6^th.  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-

 

 

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 1^st 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!

Deja Vu

I committed to 'mastectomy training' (working out) prior to the big surgery to ensure that I would be in the best position possible to recover from surgery faster.  Over a period of 2 months, including 1 chemo treatment, I did work myself up to doing a full Insanity video, yay me!  I was also able to fit in some time with the family and birthday celebrations, in between several pre-op appointments and wrapping up projects at work.

Tuesday, February 5^th was my official surgery date.  Andrew and I checked in to admissions at KU Med at 5:30 am for my 8:00 surgery start time.  Once I got to the surgery waiting room, I was called back and immediately to begin the prepping process for what  turned out to be an 8 hour surgery consisting of a double mastectomy, lymph node removal, port installation (under the collar bone), and expander installation.  For everyone who camped out or made a cameo appearance in the waiting room, and came to visit Andrew that long day, thank you.  February 5^th was Andrew’s 30^th birthday.  As a gift, I wrapped up 9 lottery tickets, 1 for each hour (and 1 extra for luck) I was in surgery.  This would give him something to look forward to and help pass the time, and if he won, that would be an extra bonus!  

When I woke up from surgery, all I can remember is having several clinicians swarming over me, swooping me into an upward sitting position, and wrapping my chest with some kind of compression.  I remember being very groggy and whining, “what are you doing?  Why are you doing this to me?  This hurts….” It is kind of funny to how straight forward you can be when waking up from sedation.  I remember Andrew and a handful of others coming back to talk with me.  At that point, I knew I was ok, and made it out alive.  I do remember taking shallow breaths and talking quietly because it hurt to expand my chest from breath to breath.   From there, I was moved into my room in the 5^th floor around 9:30pm.  I did not get very much sleep that night because I had to press this button every 10 minutes that released short lasting pain relief.  If I dozed off for too long, I’d wake up in pain.  The next morning, I was finally offered long lasting pain medications- oxycontin, vicodin, and valium….  Yes please.  Later that morning, I was asked if I would like to stay an additional day at the hospital until the pain medications were more stabilized.   I declined, I’d rather go home and see the kids, I missed them so much!  And with that, I was discharged home. 

I spent my first week of recovery sleeping, going to doctors appointments, draining tubes and bulbs, taking medications, and watching movies- nothing that required too much brain power.  I have to wear a mastectomy camisole to hold the drains and bulbs.  I have 3 drains literally hanging out of my body needing to be stripped and recorded 2x per day- bulbs and drains.  I cannot have them removed until I drain under a certain amount of drainage total per day.  Really, they are the biggest pain of all.  I am convinced that there is no way to be comfortable and have them.  My expanders (expand chest muscle to make room for implants later) are very heavy on my chest when I lay flat, so I have been sleeping in a recliner.  At this point, I am having a hard time sleeping  because the drains are a bother and I just cannot get comfortable.  Normally, drains stay in for 2-3 weeks.  As for getting them removed at my next appointment (Tuesday the 19th), it is not looking good, but I am hopeful. 

This is what a drain tube looks like once removed:

 

 

My ‘big’ doctors appointment was last Wednesday- the pathology report was final and ready.  You always know bad news is about to be delivered when someone starts the conversation with “well, the good news is…”  You are just hoping that the good news out weights the bad news enough to give you an overall positive outlook.  So here we go.  The good news is that all the tissue removed from the breast was negative for cancer cells.  The bad news is that there were a seven lymph nodes with a few cancer cells remaining.  The doctor said that she wanted to know whether those remaining cancer cells were in the dying stage or alive, ensuring the effectiveness of chemo in case there were other cancer cells that have circulated to another area in my body, unnoticeable by the most keen of tests and procedures (we are talking tiny 1-off cells).  We left the appointment somewhat relieved, but knowing that more work had to be done.  I was feeling nauseous from the pain medications, and went to the treatment center for Herceptin (the HER+ cancer blocker) and nausea medications. 

That night, my doctor called.  The lab reviewed the cancer cells found in my lymph nodes and reported that the cells they found were very viable and fast growing.  So, we believe, in theory, that all the cancer cells have been removed in my body through surgery, however, since they were found in my lymph nodes, these tiny cells could have possibly traveled somewhere in my body.  Cancer is detectable when they start multiplying and creating tumors- which are detectable.  To prevent the possibility of a small number of cancer cells, that may or may not exist, from multiplying, I will have 4 cycles of 2 new types of chemo- Epirubicin and Cytaxan OR the EC combo, as some call it.  Both of these chemotherapy’s have a pretty nice resume of side effects ranging from the hearts ability to pump blood to worse nausea and fatigue then my previous chemo, etc..  Epirubicin has a maximum lifetime amount, some side effects can go undected for up to 8 years after chemotherapy stops. Sounds like a blast.   Chemo ‘take 2,’ will start mid March, and I will receive a treatment every other week until I have had 4 treatments completed.  Again, I will lose my hair, have irregular GI system, fragile nail beds, low blood counts, the whole  9 yards- all over again.  Nothing that I am not used to at this point.  Once chemo is over, and my expanders are fully expended, I will then have radiation in the area that the cancer cells were found in the lymph nodes and possibly my chest area.  The good news is that I have never had radiation, so I get to go into this new experience blindly optimistic.  I have heard that radiation is a breeze compared to chemo, and then again, I have heard it the other way around.  I will be the judge of that :). 

When I first learned the results, I was very bummed.  The more I think about it, the more confident I am that my cancer will be beat.  This additional treatment gives me the peace of mind that all cancer cells will be gone.  If only a handful of cells were remaining, 4 whole cycles and radiation will surly do the trick.  I’ve heard that receiving news of reoccurance is more devastating than the first diagnosis.  I trust my oncology team and  will get through this portion of the race.  I keep telling myself that one year from now, things will be back to normal.  As bad as this sounds, as a mother of 3 kids under the age of 4, ‘mommy life’ is very ritualistic.  You just have to get through the push of the work week to enjoy the weekends of fun and ‘projects’ (during nap time and ‘after hours’ of course).  You begin to grow accustomed (I would even go as far to say  ‘take for granted)  to things such as picking your babies out of their crib to rock them to sleep, wrestling and tickling them uncontrollably, helping them off the chair at meal time, even holding them and snuggling with them on the couch.  Now those things as well as the mundane task of  reaching up to get the key to let the dog out, taking a shower (still!), getting up from a sitting position, and putting on button down shirts- are all very difficult.   As the cliché goes you always want what you don’t have and  I today I want nothing more than my stressed out, jammed packed, juggling act of a life back.  I’ve learned a lot along the way, but the ‘1 year from now’ cannot come soon enough. 

A New Chapter Begins

I hope everyone had a wonderful Christmas and a great start to the New Year.  I have been able to start 2013 with a brief sigh of relief, since last Wednesday was last scheduled chemo treatment, and latest doctor’s appointment.  OMG- I am proud to say that I finished 6 full cycles of chemo!!  Though it is Monday evening, and I am still really tired and nauseous, I am feeling better every day post chemo.  My last two cycles were the 3-in-1 ‘helluva treatments.’  The first was on December 10^th and the second was January 2^nd.  It was decided to combine 3 treatments (1 cycle) into 1 large treatment to reduce the amount of times I receive chemo through my veins to reduce the chance thrombosis and phlebitis caused by vein injection (as opposed to port) chemo.  I also requested to be injected via IV treatment over a 6 hour prior versus 5 hour. Believe it or not, 1 hour can really make  a difference on the pain I feel at the injection site and in my arm after chemo.  In addition I have added Advil to my daily pill regimen, and use a heating pad on my arms to ease the pain.  Unfortunately, I have to put on my ‘tough girl panties’ and grin and bear it until the pain goes away.  My eyes are still watering quite a bit, so I do often look like I am crying which is always fun.  On a side note, my hair has not fallen out, just has become really thin.  To avoid scaring the kids and looking like the crypt keeper from “Tales from the Crypt,”  Andrew helped me shave my head (for all the guys out there who would know razor levels, he shaved it to a ‘5’ so I was not completely bald) to make it look presentable.  It was nice to have some warmth from the cold air.  Andrew also shaved his head recently to show his support.  The ‘bald’ guys at work joke and say that it just not fair that I get 6 cycles of chemo and still have more hair than them.  I tell them that it is just not fair to have breast cancer after breastfeeding 3 babies :). 

Picture of the nail dammage-

 

Picture of the thrombosis and phlebitis-

 

At my most recent doctor’s appointment, we discussed the my future and the likelihood of  reoccurrence.  Apparently, even if you have a double mastectomy, that does not mean that breast cancer cannot return somewhere else in the body later.  This normally takes place within the first 2, and after 5 years of no reoccurrence.  After that, you can claim yourself as being cured- a word I am patiently waiting to hear.   I was told that statistically speaking, someone who is diagnosed with my stage of cancer and receives chemo treatment has a 20% chance of relapse.  However, since I am 30 years old, my breast cancer is HER+, and has shown itself to be aggressive, my chances of relapse are greater. That said, my doctor is being very proactive and ordering a type of pathological gateway test that will assist her in determining if any proactive measure are needed.  As you can guess, the measures include more chemo (likely 4 more cycles of a different type of chemo), something I was not excited to hear.  After going through these last two big treatments, I really don’t want to do the Chemo ‘thing’ again, but will obviously do what is recommended.  In regards to radiation, the biopsy results from my mastectomy will determine whether I will need it or not, the good news is that my doctor believes that I will not need it (I hope I didn’t just jinx myself!).

One of the things that most people do not understand, or even know of, is the term ‘chemo brain.’  Just as much as chemo stinks, chemo brain is brutal.  It is this ‘fog’ that you have while going through treatment.  It makes it hard to concentrate, learn new things, get organized, causes pseudo short term memory loss, short attention span, issues multi-tasking, and even offers a challenge with having simple discussions with others.  I am a “recovering Type-A-er,” so living with chemo brain for the past 6 months has been tough…. all goes back to letting go and focusing on the most important things.  If you do the most important things well, the rest will fall into place.  I have decided that if I had to pick and choose between either my body falling a part, or my brain going coo-coo later in life, I think I’d rather my body go, there will probably be good medications by then to fix my body :).   I think Andrew can attest to some frustrating moments consisting of… “remember when I told you…”  or the misplacing of items (Kitchen shears in the trash can being the latest casualty). To date, I think I have done a pretty good job of not allowing myself to fall behind by forgetfulness, and staying up with my famous ‘to-do lists’ to keep me on track, but I am very thankful for everyone’s sense of humor and forgiveness through this time, especially Andrew.  He has done an amazing job managing everything, I am so blessed to have him as my husband. 

My mastectomy is scheduled for early next month, February 5^th to be exact.  The 5^th is also Andrew’s official 30^th birthday.   Andrew says he is excited that the surgery falls on his birthday because he says he was told by a very special friend, a few years back, that he will be lucky in life, and he feels that there is a special reason/meaning for his birthday wish this year :).   This surgery will entail 2 surgeons, and roughly 7 hours under full anesthesia to complete a double mastectomy, port installation (yes, with the chances of more chemo and the status of my veins, I am taking my chances),  removal of right axillary lymph nodes, and installation of expanders for reconstruction. I was told recovery will take 3-6 weeks – of course I am aiming for 3 weeks.   I am blessed to have my sister Katie coming in town to help Andrew with the kids and house, along with the pleasure of changing my drain tubes and other exciting activities that go along with caring for someone who just had surgery.  My mother-in-law Cindy is going to carry on my sisters tasks after she returns home to NC.  I am pretty anxious about the surgery, and my pain tolerance has never been high, so I am trying not to think about it- just go through the motions and trust that everything will be ok.  I did hear that mastectomy recovery is quicker if you are in good shape prior to surgery.  So, of course, once the effects of my Neulasta shot wear off more, I am hitting the gym hard.  It is mastectomy training time…….bring it!

Before I sign off  from this post, I want to thank everyone who has supported me through the first phase of my journey.  I  am so blessed to have so many amazing people in my life.  I know I keep saying this, but I truly mean it.  SO much support… from dinners, gift cards, prayers, phone calls, simple emails, a kind smile, and more.  We even had a special surprise from a secret Santa – obviously this person or persons wanted to remain anonymous, but if you are reading this just know you touched my heart in such a way I will never forget.  When I think about life in its simplest form, I think of the relationships I have built, no matter how large or small.  From those relationships I have made wonderful memories.  They are what I  think about when I close my eyes and reflect.  I look forward to many more……..Happy 2013, it is going to be a GREAT year!