Blue October & April

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 1^st 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. 

 

 

Getting Closer to the New Norm

Since the last time I posted, several changes in my health have taken place- many good things, some disappointing, but nothing catastrophic. 

My Heart

I have to have echo’s every 3 months to monitor the potential for a decrease in heart function due to Herceptin.  Until August, my echo’s have shown my ejection fraction at 60% to 65% (normal.  In August, my echo showed a drop to 50%, meaning that damage has occurred.  At that time, I still had 3 months until I would be completed with Herceptin treatments.  To prevent further damage, I was put on carvedilol (coreg) and lisinopril to help regulate my blood pressure, which my doctor believes is causing my EF to drop.   After only 2 weeks on the 2 new heart meds, my echo proved that my EF bounced back up to 60%.  From August to October, I had echo’s every 3 weeks.  In October, I was cleared to have an echo and Cardiologist appointments every 3 months.  The hope is that after Herceptin was completed in November, I will be able to discontinue the 2 heart medications, and the effects are not permanent.  My last echo was last week and my EF was at 65%.  Even after my actual Cardiologist appointment this week, I will know more about how long I need to stay on the 2 heart medications, but either way, they will continue to perform echo’s for a period of time to monitor the long term effects of Herceptin.  This will also assist in helping continue research on how it effects the permanent heart function.  My heart was 100% normal before being diagnosed, knowing I have a condition that makes it risky to push myself in workouts and other aspects of my life stinks.  That said, I still worked out at least 5 days a week from May through November, and lost all but 1 of my 15 lb. weight gain from chemo.  I love being active, so I pray that I can get off the 2 medications, and my heart can self-regulate itself.  And as usual, I am anxious to resume what I consider normal activity for my lifestyle.   

Herceptin/ Tykerb

An update on Herceptin.  I was only to take Herceptin for 12 calendar months, for me,  that was through November 13^th.  This is what my doctor calls the (lovely) standard of care.  At my September appointment, my doctor recommended an additional 6-12 months of Herceptin.  Any HER+ breast cancer patient will tell you- take as much Herceptin as they will give you!!!  Then, in my October appointment, she revoked the additional Herceptin and said that since my body isn’t tolerating the Herceptin/ Tykerb combo, the long term effects would be worse then the possibility for recurrence.  This was somewhat of a blessing because each time I took Herceptin, I could physically feel the effects it had on my heart for up to a week post treatment.  My heart would race, heat heavy, flutter, etc.  I knew it was hurting my heart, but taking Herceptin made me feel confident that the cancer would be gone, I have to go with my gut to not disagree with my doctor on this one.

I started Tykerb (Liptinib), in early August.  In early September I noticed some neuropathy in my arm (more on that below).  I discontinued Tykerb for a few weeks to rule out that the Tykerb was causing the neuropathy.  Since the symptoms did not decrease or go away, I started back on the Tykerb towards the end of September.  Remember, Tykerb is a chemo pill, so after taking it for a period of time, it builds up and can cause immunity issues.  In October, I had a cold/cough combo for 6 weeks, followed by Strep, followed by a GI infection.  I officially stopped Tykerb the first week of November due to it causing my body to not be able to fight off infections.  This is a picture of my last Herceptin treatment (I have a helmet of this and semi-curl/wave dark hair).

 

Neuropathy

As of early September, I started developing neuropathy in my left arm.  My doctor ordered a MRI to help determine if I have nerve damage that is causing the loss of feeling, tingling, and decreased reflexes.  Since I have expanders in, I could not get a MRI.  Apparently, there is a tiny metal piece in the back of the expander resting on my chest well.  My Plastic Surgeon said that he has called and wrote the makers of the expanders to replace the metal piece, but has had no luck to date L.  Since my left arm was the arm with axillary lymph nodes removed, and radiated, the combination is likely the cause, but until we know for sure, nothing can be done.  I did start vitamin B6, it has helped, but not enough for me to not notice it constantly.   I did see a neurologist who ordered my an EMG, which was performed in December.  The EMG is one of my favorite torture tests to date.  In this test, several flat metal disc electrodes are attached to your skin with tape or a paste. A shock-emitting electrode is placed directly over the nerve, and a recording electrode is placed over the muscles controlled by that nerve. Several quick electrical pulses are given to the nerve, and the time it takes for the muscle to contract in response to the electrical pulse is recorded. Then, they take a needle and poke you under your skin to measure the same information.  I made it through with no tears, in talking with the tech, most people do not complete the entire test at all.  Below is a picture of the device used to administer the shocks.  In short, they determined that I have carpal tunnel in my left hand.  They think that it was caused by surgery, radiation, or I have always had it, but was just asymptomatic.  Since wearing a wrist brace at night is not helping, my doctor recommended I wearing it to work during the day.  The brace is not comfortable or attractive, but I will give it a shot. 

GI Issues

I mentioned that I had a GI infection starting in November.  I was put on Flagyl, a medication for C Diff.  After 2 of 10 days on Flagly, everything was cleared up.  On day 12, the symptoms returned.  That is when I started a probiotic, and somehow, everything cleared itself up.  Since, I’ve had a series of GI infections and was finally referred to in a GI doctor.  The doctors have tossed around crohn's disease, IBS, and more.  Everything is stabilized, but the plan of action is to provide labs to check my blood for cancer markers and other indicators of issues.  Also, when I have GI issues in the future, I need to provide samples of ‘that,’ and I have to do a high fat diet for 72 hours and provide additional ‘that’ sampling for them to look over to see if my body is absorbing fat like it should.  I also have to get a colonoscopy in mid-February.  I feel like the probing never ends…. J.

Reconstruction

Since I am no longer on Herceptin, I have to get my port flushed every 6 weeks.  I have always had issues getting blood return through my port, and my last flushed proved to be consistent.  In the past, if my port does not get a blood return, the nurse administers alteplase.  Within 30 minutes, any clotting at the end of my port line has been broken down so I can get a good blood return.   At my last flush, the nurses could not get a blood return.  Since I am no longer getting treatment, they are not allowing me to have alteplase anymore.  Keep in mind, alteplase costs around $600 each flush.  That means that though they are flushing saline into my port, it isn’t truly considered a flush because there was no blood return.  The risk is that if a blood clot forms, and it is big enough and starts traveling through my body, it could kill me.  That is a highly unlikely scenario, but being diagnosed with breast cancer at age 30 is too.  That said, I want the port out, it serves no function at this point.  Since I don’t want to recover from surgery twice, I am going to have reconstruction at the time of the port removal.  I am scheduled for reconstruction on 2/3/14, and I am really excited for some perky soft boobs!  My rock solid bullet proof vest (the expanders) is somewhat uncomfortable and just does not look normal.  I met with my Plastic Surgeon this week.  Together, we decided to go with the shaped silicone implant versus the non-shaped implant because he said that there is a less chance of rippling.  However, there is potential for the implant to flip upside down.  I believe that you have to have surgery to fix the flip flop (too bad you cannot just try to manipulate it like when a baby is breech prior to birth).  For recovery, my doctor said to plan for 1 week off work/ work from home, and 6 weeks lifting no more then 10 lbs.  Since the kids are older, and Ava is no longer in a crib, I am hoping that this recovery will be easier compared to my last big surgery.  Then again, the kids always have surprises for me J.  After surgery, I will need to have a couple subsequent minor surgeries (3-4 months apart) that require fatty tissue removed from my abdomen and injected into my chest.  The stem cells from the fatty tissue will help repair the tissue and also make my upper chest area plump up for a more natural look.  After all the stem cell transfers are completed, I will be ready for nipple reconstruction.  Yes, they can make that happen too!  All this reconstruction will take several months, but in the scheme of things, I am blessed to be alive for reconstruction.  

In Final

As for my real life, I am adjusting to the new norm of not having treatments that make me uber ill for weeks, surgeries, painful radiation, but now balancing my new life with follow up doctors’ appointments, tests, and procedures associates with remission.  This is my life.  Now that I have survived (praise the Lord!), I want so badly to go back to my old body- being able to stretch in every direction with both arms, sleeping without waking up in pain, working on my computer for long periods of time without my arm tingling, holding the kids until they want down, remembering every detail of events and conversations, people’s names, etc.  I am trying to figure out what I want to do with this life, what do I really want to do?  Before I was diagnosed, I would have told you I was living the dream, now it seems like everything is up for consideration… why why why?  Sometimes I wonder if I am over thinking it.  My life changing experience has put so much into perspective, I just don’t know what to do with it. 

I had a great conversation with my oncology NP.  I was upset because when I went in for my first annual CAT scan, I was told that it would only be of the chest area.  To me, if I had positive lymph nodes removed, and if it is assumed that if it is in the lymph system, it is in the blood system, I should have a full body CAT.  She called me to help me understand that the CAT scans are really not very effective.  She reminded me that I received more extensive treatment that is included in the standard of care= extra chemo + radiation.  I had 1 of 16 positive lymph nodes, she said that she has seen patients with 16/16 positive lymph nodes without recurrence.  I cannot always focus on the medical systems preventative measures, I need to stay aware of the physical signs of recurrence- lumps, pain, sickness, etc.  She said that they have already started doing the blood marker tests to measure for elevated levels of certain measurable indicating recurrence.  I just need to reduce stress and listen, only time will tell.

In final, April used to be my favorite time of year, but I think October is starting to win me over with the beautiful weather, change of seasons, the holiday season beginning, and of course, breast cancer awareness month.  As a survivor, it feels good to have support from the community and help push information to those who are unsure of the signs of breast cancer.  Prevention is important, but acting on those early signs are critical.  Advocate for yourself, kick and scream until you get what you need.  Please please please take care of our bodies- eat right, exercise, reduce stress, LIVE your life in a healthy way… remove all risk factors in your control and set you up for success; SO if a serious medical illness does occur, your body chances of perseverance and restoration are much higher then any others who are coming into an illness with existing health challenges.  I’ve seen it first hand, patients diagnosed with cancer with heart problems, diabetes, etc.- things that can be prevented!- all those people needing treatment that their doctors cannot give them because their body cannot tolerate due to the current state of their health.  Please do not let that happen to you, don’t choose to change your lifestyle just for that reason, change it so you can live a better life now, have more energy, feel good, take less medications, whatever you want- it is accomplishable with making choices.  You can do it!



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!