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!   

Light at the End of the Tunnel

Have you ever ran into a friend or acquaintance who asks, “how is it going?” and you have had an epic day on the on the scale of terrible?  Instead of updating them on all the things that went wrong, you smile and say, “I’m doing great” then immediately change the subject.  That happened a lot during my last cycle.

I started cycle 4 of 6 with a port infection.  To treat that, I had to go to KU Med every day for 4-5 hours to get an IV of vincomyacin for 14 days.  Yes, that included weekends.  After my first treatment, I broke out into hives all over my body.  Instead of changing my medication, the nurses slowed the IV drip from a 1 hour IV to 2 hours.  The rest of the 4-5 hours were consumed by premeds, waiting room time, and nurse taking turns trying to get a good IV in my veins (we could not use my port since it was infected).  Apparently, I have small veins that blow easily (event in the middle of an IV- ouch!!!) coupled with the harsh medicines.  Once, I went in for vinco and warned the nurse that I was a ‘hard stick’ (that is my way of saying, I’m out of veins, if you are not a pro, please get someone who is), her response was, “oh, it could not be as bad as the person who was stuck 6 times by 4 different nurses.”  My response was, “that was me.”  On day 13 of vinco, I say goodbye and had surgery to have my port removed.  This means that I no longer need to wear bandages at the base of my neck to cover my port line that was trying to poke through the skin.  Needless to say, between the Benadryl, vinco, and chemo, those 2 weeks were a challenge and I am happy that it is done.

This was the day I got stuck 6 times for 1 IV- ouch!
(I am pointing to the bandage that already came off)

When I met with my doctor last Wednesday, the remainder of my plan of treatment changed.  I had 2 cycles left (2 sets of 3 treatments), instead of taking 6 more treatments, my doctor ordered 2 ‘helluva’ treatments, basically combining 3 treatments into 1.  This will reduce the amount of times I need to get stuck to take chemo in my arm vein- taking chemo through an arm IV is also damaging to the veins and dangerous since my veins blow in the middle of IV’s, harming the tissue.  Some of the veins in my arms are have turned different colors and I have thrombosis (blood clots in veins) in my arms, which is painful.  It will also help minimize the long term effects of the steroids and chemo.  I won’t find out the results from the P10 test for a bit longer.  So far, I do have a lot of hair left on my head (it is just really thin and probably needs a cut- but not looking like the creepy skeleton from Tales of the Crypt), it was supposed to fall out after my 3^rd cycle, but it is still here.  During my conversation with my doctor, she looked at me with a serious look and said, “your hair WILL fall out.”  My response was, “sounds good.”

I did get a bittersweet 'gift' of an additional week off from chemo.  I have been ill with a runny nose and sore throat for the past 9 days, my lab results came back with numbers that would not qualify for me to take chemo today.  So, my doctor changed some meds and added another to fight the congestion and get me as healthy as possible before I take the ‘helluva’ chemo next Monday.  This is the first time I have had 2 off weeks in a row and I am looking forward to getting some things done in preparation for the crazy holidays.        

Again, thank YOU for all the prayers and support.  I have had help from friends and family along the way, I am so grateful for everything.  I have heard that people change after having cancer (and probably other life changing events), I don’t think that is necessarily true.  It depends on the person and their willingness to let go of control and accept God’s plan for you.  When I spent 2 weeks at the cancer center, I was surrounded by cancer patients and their families every day.  This is my inconvenience, but for some, this is their life, or end of life.  One Saturday morning as I stood in line at the elevator I talked to a patient (I normally keep to myself when I am there).  She said she has had 56 cycles (I have 6) and she was planning to get as much as she can get, that is when I realized she was terminal.  On the way out of a couple chemo treatments, I saw a mom with a 9 month old baby boy with a port installed on the side of his head behind his ear.  Sitting in the waiting room for treatment, surrounded by bald heads and sick people with masks covering their mouths, you are saddened because life can be so tragic.  So I’m not going to give the ‘ life every day to its fullest’ speech, I really don’t believe in it.  For me, that would be irresponsible J.  Just know that things could always be worse.  There are some things we can control, some we cannot, and it is important to know the difference between the two.  No matter what, you have choices.  Don’t spend any time complaining about what you cannot control, all you can do is change your attitude about it and focus on the important things in life.  I have not mastered that, but it is something to work towards. 

"It's Complicated"

My 3^rd cycle of chemo is now over and I am in my ‘off week’ until Monday when I begin cycle 4 of 6 cycles total given everything continues to go well.  I have officially hit my ½ mark of chemo (yay!).   Chemo is compounded and I am really the feeling side effects.  No longer am I just tired and nauseous the days following chemo, I am exhausted (staying up past 8pm is a challenge) and nauseous days 1-6 after chemo. My first 2 cycles were on Thursday or Friday each week.  There is no such thing as recovering from chemo over the weekend- chasing kids, running up and down the stairs, weekend activities (trying to keep life normal for the kids),  etc.  I started doing my chemo on Mondays so I could recover at work with my laptop and drawers full of nausea friendly foods and endless ice water.  To date, I have continued my normal workload and schedule at work.   Starting last week I began to take Thursdays off for rest.  On my first Thursday off, I slept until 2:00pm,  and it was amazing.  As a ‘narcoleptic wife,’ I am very lucky that Andrew is a Tony Danza plus when it comes to being super dad, husband, employee, home maker, yard warrior, and Betty Crocker just to name a few roles he plays. 

I had a doctors appointment Wednesday.  It started with a labs, an sonogram, and then the appointment.  The good news…… the sonogram showed NO abnormal lymph nodes, meaning to the eye they look cancer free.  As for where the cancer mass that was in my breast, there is no verdict.  Sounds odd, and the reason is because after the excisional biopsy (removed the mass but not clear margins around the mass where cancer could have lived as well- so different from a lumpectomy), the place where the mass used to occupy filled with fluid, which is part of the healing process.  The fluid goes away over time, but is still present making it hard to see much of anything.  I will know more after my next ultrasound, after my next cycle.  As for my labs, my numbers continue to decrease.  My platelets have dropped to a very low level, which may explain my increasing fatigue.  The doctor recommended that I start working out to help me build energy naturally.  As a side note, I have gained about 10 lbs since I started chemo, so it may help with slowing the weight gain (mostly) induced by water retention and my new found steroid addiction.  My eyes have become watery a side effect of the Taxotere(chemo), so I get to take yet another steroid in the form of eye drops 2 time per day to reduce my chances of developing scar tissue in my tear ducts which would leave me with “dry eyes” after the treatment is done.   The last,  but most important information that we received while at my doctors appointment is that within the last 4 weeks, hard evidence has been validated to support that there is a P10 mutation that 30% of HER2+ breast cancer patients have that makes the very important drug  Herceptin ineffective.  Herceptin is a drug that I get through an IV with chemo that, in short, blocks the cancer cells from multiplying.  That means that we will not be trying to kill cancer cells with chemo as they multiply and travel to other places in my body.  The chemo kills the active cancer cells, the Herceptin keeps them from not multiplying, and through the natural life cycle of a cell, they die over time anyways. So what this means to me?  If I have this P10 mutation, the cancer is multiplying while we are trying to kill the cancer cells and I have been taking a drug that has serious side effects for no reason.  This study that my doctor discussed with Andrew and I basically said that with this P10 mutation, there is a high chance that I would go into remission for some or several years (even having a double mastectomy), and the cancer come back later somewhere else because it was never 100% eradicated.  To me, this is all very complex and with chemo brain, pictures and repetition helps understand it all.  To determine if I have this P10 mutation, my doctor is having tumor tissue, that was removed in July, sent to labs to have tests run to see if the P10 mutation exists.  If it does, the good news is that there are other drugs that can be administered with hereceptin that have proven to work (sigh of relief).    

Several people have asked me about what chemo, so we took some pictures to show you all what it is all about.  They are located on the link below if you'd like to see.  If you click on an actual picture, I enclosed some commentary about what is occurring in the picture.  

http://tcancersurvivor.shutterfly.com/pictures OR-

This is the port 'needle'-


All the gauze is called a 'dresssing,' it keeps me from getting infections-


The chemo nurses must wear this while administering my type of chemo-


And this is what I do while taking chemo-

 

Thursday I noticed that my port was bruised and the surrounding area was red.  When I woke up Friday morning, the entire area was red, swollen, and painful.  Early Friday morning I dropped off the kids and went to my doctors office.  From there, I had an ultrasound of the area to rule out a blood clot and identify any pockets of infection that they can biopsy.  The end result was a Radiologist’s recommendation to remove the port.  Instead my Surgeon decided to give me an antibiotic through an IV for 7 days starting Friday (today).   We went over the symptoms to look for in case the IV was ineffective and I needed surgery prior to my follow up appointment Monday.  My hope is that the IV works great and no surgery is necessary, though there is a strong possibility that I may still have to do surgery early next week.

Staying positive is key to healing and overall attitude, but the reality is still there.  The drugs and chemo take a toll on the body.  My nail beds hurt when I try to pick stickers off household items (thank you children:)). I cannot drink coffee, milk,  soda, and I cannot have my beloved ice cream…..all of which come at a very expensive cost lasting a couple days and it totally not worth it.  My Neulasta shot rocks my skeletal system to the point I can hardly sit, stand, or lay in one position for more then 20 minutes.  It hurts to go up or down stairs, walk, carry heavy items, etc. This lasts from day 3-5 after the shot is administered.   I love that shot for the white blood cells, so bring it.  Prior to this ‘inconvenience,’ I was on month 6 of Insanity and one of the best shapes of my post-baby life.  Since then I have gained weight, my cheeks are puffy from chemo, and have no time or energy to work out.  My clothes don’t fit and I refuse to bust out the maternity or get new clothes.  My hair is still falling out slowly, and I awake everyday  waiting for the big  clumps to fallout.  There is no anxiety about it, at this point it is a rite of passage, I earned the bald head, even if it is  just in time for winter.  I tell myself, this is all temporary, it will all go away and I can go back to being super mom, loving and equal wife, friend who calls back, FB posting, home improvement partner in crime, health maniac workout junkie, Barchers kids paparazzi again. 

In final, congratulations to my brother Jimmy and his wife Jenny (the new Jennifer Ziegler) on their marriage last weekend in the beautiful Florida Keys.  Thanks to a team of Skype professionals (you know who you are), I got to see their wedding from my computer via Skype since I was unable to attend.  I have gotten to see some pictures…..… man, I wish I could have been there.  I am pretty sad I was unable to attend, but with the Neulasta shot last week, the risk of infections from travel, and the distance to a medical facility if anything were to go awry, was a risk I couldn’t take.  At the end of the day, the Ziegler family gained a perfect addition to the family and my brother is happy ever after… I know my mom would have LOVED her.

Thank you ALL for the many prayers and support.  I am at a loss of words when I try to describe how amazing people are, even people I did not know very well prior to my diagnosis.  God has blessed me in so many ways, now I have to figure out what he wants me to do with the challenges he has placed in my hands.  Have a great next 4 weeks.

Think Pink- Becuase This Really Stinks :)

It’s October, breast cancer awareness month, and as one might expect this month hits a lot closer to home than ever before.  For those of you who make contributions, whether that be time or money, to the many cancer foundations I want you to know you are making a difference and my story is proof of that. Early on in my diagnosis I was told that had my particular breast occurred prior to 2004 my chances of reoccurrence would be high with a low survival rate.  However, with the advances in research and medications I am blessed with a positive prognosis, and for that I will be forever grateful to all of you.  As a reminder it is never too early or too late to start self-breast exams if you do not already perform them on a monthly already.  Below is a link that will show you how to perform a breast exam-  http://www.breastcancer.org/symptoms/testing/types/self_exam/bse_steps

The day after my last chemo treatment of cycle 2 (each cycle is 3 chemo treatments, followed by a week off, then the next cycle begins), I received my Neulasta shot in my stomach.  The nurses jokingly call this the $20k shot because of its high cost. The purpose of this shot is to inject a man-made protein that stimulates bone marrow to produce white blood cells.  Those white blood cells boost immunities to protect me from infections since chemo reduces white blood cell count.  I spent my last ‘off week’ sick, and I have to say that this week was much better.  The only down side to this $20k shot is bone and joint pain, I have now validated that my high school athletics will demand payment in my 70s and 80s.  I felt like my body had aged about 60 years for about 3 days, making it painful to walk up and down the stairs and to lift myself up from the chair or ground.  I continue to gain weight and lose hair -the glamorous side effects of the many other drugs I take.  Andrew jokes that now I can experience how some men feel as they get older. 

I did go to the doctors last week because my port line was red and looked infected.  As a reminder, a port is a little object that is surgically installed right under the collar bone, and is connected by a catheter -I call it the ‘line’ because it sticks out of my skin to a nearby vein).  Despite the discomfort, I love my port because it protects my veins from scar tissue and makes it easy for clinicians to draw blood for labs and administer chemo.  When I had surgery to install my port, my surgeon told me that they couldn’t find a good vein in my chest, so they had to run the ‘line’ over my collar bone up to a vein in my neck(it is not common to have to install that way, but it was the best option).  That thin area of skin over my collar bone become irritated, so I went to the doctors to have it checked out.  Long story short I earned myself a new daily assignment of cleaning and applying prescription ointment  to the area and topping it off with a gauze strip twice a day.  The gauze strip on my neck is a pretty hot accessory  , and I love making stories up about bar fights and sun roofs when people ask what happened one the elevator at work.   Good news is I think it is starting to look better with the chance (if you are squeamish skip to the next paragraph) of the line coming through my skin lessening each day. If that happens they will just administer chemo through a vein until I can get into another surgery for new port placement- meaning  they will not have to stop treatment- yay! . 

My port sticks out of my skin!!-

 

This week I had my monthly meeting with my oncologist - as I always do at the end of each cycle.   She informed me that my body is still responding “very well” to the treatment and in regards to the tumor in my breast it continues to shrink.  Of course, I asked if there was a chance I could be ending my treatments sooner than expected, but that was answered with a smile and “that’s not typical procedure” – hey at least I tried.  

I am looking forward to the weekend to spend time with family before the start of cycle 3.  Again, I appreciate everyone’s support and encouragement through this process.  I am blessed to have such amazing friends and family. 

Rolling with the changes...

Everyone has a friend, relative, or someone they know who has cancer.  To them, it is a characteristic of that someone until they either die, or the cancer goes into remission.  One thing I have learned is that each person and their cancer are so very different.  “They” say that you will feel the effects of chemo on certain days, “they” say that you will lose your hair during or after cycle n, “they” say that certain anti-nausea medications are God’s gift to cancer patients… and all I can do is smile and laugh, because no amount of research and planning can help me know what to expect so I can be prepared. 

For my second cycle, I moved chemo to Fridays because I wanted to have a good Saturday, since day 3, 4, and 5 post chemo are nauseating and make me exhausted.  And of course, once I started my second cycle, my nausea and fatigue moved to day 1,2,3, and 4.  That said, I am considering moving chemo to earlier in the week next cycle. My doctor said that there is no reason that I should be feeling nauseous, however, after 6 weeks of feeling nauseous after chemo, I am begging for new medications.  The next step is to try a series of anti-nausea medications versus 1 every x hours.  This ups the amount of medications per day to well over 12-13, but who is counting?

I have begun to experience the infamous “metal” taste when I eat certain foods.  I now pack plastic utensils and peppermints in my purse a.k.a. medicine cabinet.  In addition to my changing taste buds, my emotions have also been affected.  The medicines make me “hormonal” – I think it is the steroids.  Andrew jokes that if I start working out I may be able to make the transition to professional bodybuilding or WWE (that’s wrestling I was informed)J!   Most of my days end with me going to bed much earlier than I am use to, it’s a fight to stay up past 8 some nights.  That said I must say Thank you to my awesome husband who has been by my side, put up with my ever changing moods, and has carried the load when needed. 

Dealing with all the hair loss in the shower was taking too much time, so I cut my hair into a “pixie” style haircut.  Elizabeth keeps telling me that I have a boy haircut, and I remind her that Tinkerbell and I have matching haircuts.  She argues that Tinkerbell has a bun on the top of her head. Disney needs to get their story straight because technically Tinkerbell has a couple different haircuts, so any help on that end would be nice Disney.  Andrew and I did pick out a wig last week.  I have to say, it is not uncomfortable, keeps my head warm, and Elizabeth really likes how normal I look.  Personally, I do not mind the short or no hair, wearing hats, or trying out different scarves (they are ‘in’ right now, right?).  Either way, how often in your life do you get to wear any kind of hair you want and get to go ‘over the top’ with accessories?  Why not have a little fun with it? 

This is about how much hair I lost each time I took a shower.  I think I spent more time trying to collect it before goin gdown the drain then actually showering!!

 

 

The vacuum took a beating as well :(-

 

 

My thinning hair-

 

 

 

PS. I am giving a shout out to my friend Patty at Brian Joseph’s.  She did a great job with my wig, and for those of you knowing someone recently diagnosed, she has a formula that, if applied before and during treatment, saves your eyelashes and eyebrows- which does not help me, but I’m all about sharing the knowledge.

This week will be my last treatment for Cycle #2 – then I have a week off….YIPPEEE!  I am hoping that this week off will be a little healthier then the last, but any version of less nausea sounds energizing.  Again, I want to thank everyone one of you for your encouragement, blessings, cards, warm dinners, gift cards…the list goes on.  Every day is a challenge, but with all your love and support you make this battle a little bit easier.

"What lies behind us and what lies before us are tiny matters compared to what lies within us."