A picture of Kathleen Schilter, cancer survivor.

 Kathleen Schilter is a 51-year-old mother of five. In October 2015, she was diagnosed with breast cancer. This is her story, in her own words...

Kathleen's Cancer Diary

Be sure to check back often as Kathleen chronicles her cancer journey.  

 

Perspective

I am so happy and relieved to say that I now have completed all four rounds of chemotherapy…and I’ve gained a few interesting insights while going through this experience.

First of all, unlike its depiction in the movies, chemotherapy did not cause a vomiting nightmare (I was worried about this, so thank you Lord!). Instead, Dr. Nand made sure that I had a prescription anti-nausea medication that I could take as needed. Also, I was directed to take a steroid medication on the day before and the day after I received my chemotherapy – all of which helped to squelch both nausea and allergic reactions.

Secondly, it surprised me that I felt quite good in the first two to three days after receiving chemo….but THEN it hit! It wasn’t until the fourth, fifth and sixth days after receiving chemotherapy that I began to feel like I’d come down with the flu – dizzy, body aches, headache, fatigue. During those days, I knew that keeping my head on a pillow and laying still was my best bet. While no fun, it made a huge difference to me that I had been prepared for these symptoms.

The process of losing my hair was just that – a process. It did not suddenly come out in clumps. Rather, I began to notice hair strands on my pillow in the morning, and more in the hair brush, more on the shower floor. All of this started to happen somewhere around three weeks after my first round of chemotherapy. I found that the anticipation of having my hair fall out, the anticipation of becoming bald was making me cranky and anxious! It was time to go to the salon and get a short style. I figured that going from a short hair style to bald would be an easier transition. And, after two weeks of sporting around my short new ‘do, that is exactly what I became – bald! I never considered what a time-saver it is to be bald! Being able to forego shampooing, blow drying, curling my hair has turned me in to Miss Lickety Split! My mom made me both chuckle and teary-eyed when she saw my hairless head for the first time since my infancy. Ss she kissed my smooth head, she said, “I remember that bald noggin very well!”

Something else has been giving me a very solid perspective regarding my breast cancer, the surgery I underwent to remove it, the decisions to have chemotherapy to lessen my risk of a recurrence and my upcoming radiation treatments. My type of breast cancer has been well-researched and understood. There is a solid and successful treatment path. I was fortunate to have it discovered early, when it was 1.4 cm in size. For all of this, I say a daily prayer of thanksgiving to God.

But, I have someone very special and loved in my Murphy family who is fighting a rare and aggressive cancer. My nephew, Adam, is just 14 years old, and has been receiving ongoing chemotherapy since his diagnosis 15 months ago. At the time of his diagnosis, tumors were found everywhere – pelvis, liver, spleen, lungs and bone. His beautiful, bright young life has been interrupted by a cancer that is not fully understood, that has not been widely researched due to its rarity, that does not have a clear treatment path, and that consists of numerous tumors, of horrifying sizes. When I think of Adam (and I do, prayers for him every day!), and his wonderful parents and brother and sisters, and the uncertainty that they bravely and faithfully face, my perspective regarding my own diagnosis of breast cancer takes on sharp clarity. My four rounds of chemo suddenly feel very, very manageable.

 


 

Going Under The Hat

Me in my colorful and fun hat!

After the wonderful distraction of Christmas and the New Year, I received the phone call that I had been waiting for – it was my oncologist, Dr. Nand, calling with the preliminary results of my genomic testing. Dr. Nand relayed to me that my tissue testing revealed that I have a high risk of my cancer returning. However, by adding chemotherapy to my treatment plan (along with six weeks of radiation and a hormone-blocking medication), this risk of recurrence would be significantly reduced. Sign me up! While I know that chemo is no picnic, and that it can be very difficult, as it comes with its own unpleasant side effects, I am both willing and grateful to receive it if it will protect me from this Beast rearing its ugly head again!

And so, on January 11, I headed to Columbia St. Mary’s Hospital Ozaukee to receive my first of four chemotherapy infusions. The first order of the day was to have a small infusion port placed in my chest, which can be accessed for all chemotherapy infusions, other intravenous infusions, and whenever blood samples are needed. In this procedure, the port was installed under my skin, below my collarbone, and is connected to a large vein in my chest.

Next stop, the Oncology Clinic for Chemo Round #1! While this is considered to be an outpatient clinic, it just so happens to be housed within the hospital, and is just down the hallway from the Surgery Department where I work as a nurse. I have passed by this clinic many times, bringing surgical patients from the recovery room to their hospital rooms. I find myself still feeling surprised to be visiting this Oncology Clinic as an actual patient.

The very, very best part of January 11 was that my sister, Colleen, was with me. She had arranged to take the day off from work (Colleen teaches third grade in Madison), to accompany me to my first chemotherapy treatment. Colleen has been at my side for just about every small and large event in my life – we grew up in the same wonderful family together, we walked to school together every day, we shared a bedroom together, we drove to high school together, I followed Colleen to Marquette University for college, our children have grown up together, we have talked to each other on just about every day of our lives! Having Colleen with me that day just felt very, very right.

My nurses explained very clearly the process of receiving the chemo infusion. First, I was given a steroid and an anti-nausea infusion. These were given just prior to the chemotherapy infusions to alleviate and lessen the chance of an allergic reaction to the chemo drugs. My job was to sit back and relax in the big comfy recliner chair and hang out with Colleen! We spent time looking online at the fashion world of Chemo Hats, as I had already been told to expect my hair to begin falling out within two to three weeks after this first infusion. And, as I sat there, happy and comforted to have my sister with me, I decided that if temporary baldness was in my near future, and if I was “Going Under the Hat,” then, by golly, I was going to make it colorful and fun! 


 

Waiting And The Gift Of Distraction

A full house for the holidays!
Lane, Megan, Ryan, Mary Kate, Liam and Brenna.

Well, since my lumpectomy surgery in mid-November, I have been healing and appreciating the normalcy of work and family life. The healing process has gone smoothly, and this was happily confirmed by Dr. Lal at my follow up appointment. She put my mind at ease regarding the upper arm numbness that I have had since surgery. While I have full use of my arm, I do have an area in the upper arm that is numb. Because the lymph node biopsy involved some deep incisions, it’s likely that nerve pathways were either cut or irritated during the surgery. She tells me the sensation should return, hopefully fully!

I’ve been waiting and wondering what the next step in my treatment will be. In a nutshell, will I need to have chemotherapy and radiation OR just radiation? I’m hoping that I do not need chemo, but realize that if it is deemed necessary to help keep this cancer from returning, then so be it.

And what has been the reason for the wait? Well, during my surgery, a tissue sample from the cancerous lesion was saved and sent off for very specific testing – genomic testing. By analyzing specific genes in my cancer tumor, a very important prediction can be made: am I at a LOW RISK or a HIGH RISK of having this breast cancer return? Once the results are known, Dr. Nand will meet with me to discuss them and determine my next course of treatment – chemotherapy and radiation or just radiation? As I find myself feeling impatient and anxious for the results of this genomic test, I’ve found that regular daily life has a wonderful way of distracting me.

Speaking of distraction!! With Christmas 2015 almost here, all of our five children are back in the nest. While Liam and Brenna are still living at home, Megan and her boyfriend, Lane, Mary Kate and Ryan are all home for the holidays. I can almost hear our house groan, as along with their arrival, comes all of their STUFF! The shoe pile near the back door is suddenly doubled in size, the washer and dryer are running a daily marathon, the kitchen is never closed and the counters never clean, the refrigerator is opened and closed constantly, every bedroom is filled, towels are hanging from the upstairs bannister, kids borrowing the car for trips to Target, Bayshore Town Center and Dairy Queen greatly increased, the Christmas tree is heavy with ornaments and sparkling bright lights, conversation, laughter, activity, conflict, happiness...it’s all happening here. I would argue that this family of mine is the best distraction in the world!   

 


 

Surgery Day – Question Answered

Having worked as a nurse since 2007, CSM Hospital Ozaukee is a very familiar and comfortable place for me.

My surgery is all done. It is in the rear view mirror. I’ve been waiting to be able to say that. It’s such a relief.

November 13, the scheduled day for my lumpectomy surgery, was finally here. I’d been looking at this date on our pantry door calendar for a few weeks now, circled in red ink. Finally, the day was here, the day that this unwelcome cancer would finally be removed! Also, a day of finally getting an answer to my biggest question: has this spread to my lymph nodes?

Tim and I arrived bright and early to the hospital. For me, Columbia St. Mary’s Hospital Ozaukee is a very familiar and comfortable place. I have worked as a nurse in the Emergency Department since 2007, and also in the Post Anesthesia Care Unit (PACU – the Recovery Room) since 2013. It feels like my second home, and I am very proud of the care that is given to patients, every day of the year.

Proud is actually an understatement. I work with top-notch, competent, knowledgeable, kind and helpful people – nurses, patient care techs, doctors, respiratory therapists, surgery techs, housekeeping staff, radiology techs, food services, chaplains, security crew, unit coordinators – the list goes on. As I walked into the hospital that morning, I couldn’t help but think that now I was going to be on the receiving end of this great place that I am so proud to be a member of. My mind felt at ease.

Once registered, Tim and I headed up to the Day Surgery unit on the second floor. My nurse showed me to my patient room, reviewed my health history, confirming that I indeed had not eaten since the evening before, clarified my drug allergy status, and had me change into a patient gown. She was also able to explain the timetable for the day, as I was first going to have a placement of a guidewire (which would then enable my surgeon, Dr. Alysandra Lal, to exactly locate and remove the cancerous lesion in my right breast) and also an injection of blue radioactive dye into my right breast (which would then help my surgeon locate those lymphatic channels that the breast drains to – these were the lymph nodes that were going to be removed and biopsied to look for any evidence of cancerous cells within them). Once these two procedures were completed, then I would go to surgery.

Both procedures were done, both with professional and kind staff that explained everything to me. An added bonus – my Nurse Navigator, Peggy, was also with me. She has been a constant person during every step of this experience. It wasn’t long after I arrived back to my Day Surgery room that I was then beckoned to go to the Pre-Op Holding Room.

Giving Tim a quick hug, I was off to very familiar territory. PACU nurses also work in the Pre-Op Holding, and now all felt good – I was amongst my co-workers, my friends. They are fun and funny, and I received lots of well-wishes – all of which meant so much to me!

I was then met by my anesthesiologist, Dr. Kevin Scheu. He would be with me during the entire surgery, monitoring my vital signs and administering the general anesthesia. I’ve had the pleasure of working with Dr. Scheu before, receiving his patients who have just finished surgery and arrive into the PACU. I’ve seen his excellent care up close, his attention to detail and the way that he thoroughly attends to his patients. Needless to say, I felt very grateful that he was going to be my anesthesiologist. Next, Dr. Lal popped her head through the curtain, all ready for surgery to be underway. She confirmed with me the exact surgery that was about to be performed and also gave me encouraging words…after that, thanks to Dr. Scheu, I became very, very relaxed and sleepy….

The next thing I was aware of was Ann, my friend, my co-worker (herself a breast cancer survivor of two years) and now my Recovery Room nurse. The first thing I asked was, “Were my lymph nodes okay?!” And her reply, “Your lymph nodes are clean. No cancer was found.”

Music to my ears….and I recall saying a prayer of thanksgiving, “Thank you Jesus!”

 


 

Telling The Kids

Brenna and Megan always make me smile. 

Today we took care of what has been distressing me the most about this cancer diagnosis. We told our kids about it. Well, the four oldest kids. I’ve known all along that they need to know, but Tim and I wanted to wait until we had the proper information and details. We’ve known that this news would be upsetting, distracting and painful for them to hear. The last thing we wanted was to have any of them filled with fear and anxiety. Having complete information and a treatment path would help them to wrap their minds and heart around what was happening.

So, three phone calls had to be made: to Megan in Chapel Hill, Mary Kate in Chicago and Ryan in Dayton. The perfect moment came today, while Tim and I were in the car, driving home after a weekend away. Since we had a two-hour drive in front of us, I had plenty of time to talk to each of them. I knew it would be difficult, but it was time. I needed them to know – as there has been a big elephant in our house and they each needed to know about it. I have grown tired of speaking to them on the phone for the past three weeks and pretending that all is fine and uneventful at home.

This is, in a nutshell, what I told them (and Liam, who we told as soon as we arrived home): “I need to tell you about the mammogram that I had done three weeks ago. It showed an area on my right breast that was abnormal, and they had me come in for further testing, including a biopsy. The tissue from the biopsy shows that it is an early breast cancer. I am so lucky to be able to tell you that it is early! I am so lucky and thankful that I have gone for my yearly mammograms! Dad and I have already met with the doctors, including a surgeon who will remove the cancer from my breast. I will have a lumpectomy, and then, depending on what is found, the doctors will decide what the next step will be. I know this is upsetting, but the most important thing to remember is how fortunate I am to have had yearly mammograms. I feel so fortunate to be able to tell you that it appears to be early – and treatable!”

I think, most importantly, Tim and I want our kids to grab onto their faith and somehow weave this news into the fabric of their Catholic faith. None of us are alone, we have each other and we have Jesus with us always. This knowledge alone gives me great hope, happiness and peace of mind.

Every one of these four kids responded to this news with care, concern and love. Not one of them expressed how this might affect them and their busy pursuits. Instead, their thoughts and worries were for us, their parents. And, even though it was only today that I’ve told them this news, I have great happiness knowing that they are there for each other. I know from my own experience what a wonderful gift it is to have brothers and sisters.

Our fifth child and youngest, Brenna, is just 6 years old. And I sense very strongly that she can and must remain blissfully ignorant. She may have questions, curiosities, concerns. All that can be answered matter-of-factly, and to her satisfaction. I think her world will remain secure as long as mom and dad are on hand and daily life continues. I plan on talking to her first grade teacher tomorrow, so that she can help us in detecting any worries or anxieties that might crop up. Tim and I plan on keeping Brenna’s life as care-free and happy as possible.

 


 

Meeting Day

Well, today was a big day for me. I’ve been anxious to meet with the team of doctors who will be helping me get rid of this most unwelcome arrival in my life, this threatening one centimeter of tissue that has upended my happy existence, this nasty diagnosis called breast cancer. And, today I was able to meet all of them.

But, before ever meeting my doctors, my life has been touched and helped by a wonderful nurse named Peggy Long. Peggy’s role in my care is to act as my Nurse Navigator – my very own “Go-To Gal.” Her role seems to me to be part Communicator Extraordinaire (she’s made certain that the line of communication between me and my doctors is clear and concise; she has made herself available and always accessible to me; no need to freak out on my part – I can call Peggy and know that she will calmly explain any confusion or misconceptions I might have!), part Human Information Desk (it was Peggy who deciphered my pathology report into nuggets of information that made sense to me; it’s been Peggy’s extensive knowledge of breast cancer that has calmed the stormy seas for me; she’s on her game and has been a great comfort and resource to me), and part Patient Advocate (she wants me to get better; and she will be right by my side every step of the way).

When Tim and I arrived for our meeting, I was already comforted by the knowledge that all of my doctors had already met earlier in the morning to study and discuss my treatment plan. The thought of these experts (all of whom have spent years pursuing medical school, internships, residencies, fellowships, countless sacrifices to become leaders in their respective fields) focusing their time and attention on me, when I need them most, leaves me feeling both humbled and so very grateful. What a gift!

I first met with my surgeon, Dr. Alysandra Lal. I have the pleasure of being a nurse in the Recovery Room at CSM Hospital Ozaukee and occasionally care for Dr. Lal’s surgical patients. I was glad to see her, and the first thing she did was greet me with a hug. Then, down to business. She was able to explain to me that I am a good candidate for a lumpectomy. Because my breast cancer appears to be early, and further MRI images do not reveal any further abnormalities, she recommended a lumpectomy to remove the cancerous tissue.

Also, during my lumpectomy, she will also perform a Sentinel Node Biopsy. Basically, she will locate the lead lymph nodes that my breast tissue drains to, remove them, and wait while a pathologist looks at them under the microscope. If these lymph nodes are clean with no evidence of cancer, then the surgery is done and it will be good news. If the lymph nodes show evidence of having cancerous cells, then she will continue her quest to find further cancer in other lymph nodes. If this is the case, then so be it, knowledge is power and I want to know exactly what I am dealing with so it can be stopped! At this point, I said to Tim, “Well, this is why I’ve had that mammogram done every year – as it says in the Women’s Imaging Department – ‘The Best Prevention is Early Detection’!!”

I ended my meeting with Dr. Lal by writing down my surgery date on my trusty pocket calendar. November 13. I’m ready. I want this cancer OUT OF ME!

Next, I met Dr. Ranveer Nand, my oncologist. He struck me as calm, confident and kind. I am certain he carries a daily burden of concerns for countless patients under his care, all with varying prognoses. But during my time with him, his attention, care and concern were upon me and my diagnosis. Dr. Nand is not yet certain that I will need chemotherapy; his hope is that once the tissue is removed and genetic and genomic testing is completed, that my treatment plan will include radiation therapy and hormone therapy only. I hope he is right! He will be managing the hormone therapy I will be taking.

We talked a little bit about a medication called Tamoxifen. I’m not gonna lie – I have heard some unpleasant things about this medication. BUT, I am determined to look at it as my friend. Yes, my friend. My cancer is fueled, fed, by the hormones estrogen and progesterone. Tamoxifen BLOCKS the estrogen from feeding the cancer. In effect, it starves the cancer! What is not to love?! I’m sure this will be a topic to visit in my future!

Dr. Ranjini Gandhavadi will be my radiation oncologist. She was delightful. I instantly liked her open attitude and her competent and optimistic demeanor. She gave me an overview of what radiation will be like for me. That I can expect to take three to four weeks to heal from the lumpectomy and then I will begin a six-week course of radiation treatments. She mentioned different skin concerns, and that all will be addressed in detail once my radiation treatments begin. I liked that she wrapped up our conversation by reminding me that my treatment plan is based on solid research, designed specifically for me, and is indeed the best plan of care.

And so, with my meeting completed, I walked out of the hospital, my hand wrapped in Tim’s warm hand, both feeling the gift of relief, confident that God has put capable, kind, good people in my path.

 


 

Day 1

My Family: Ryan, Megan, my husband Tim, that's me in the purple, Liam, Mary Kate and Brenna down in front.

Today, everything seems surreal. My surroundings are the same, the people in my life are the same. Life seems to be moving along status quo for everyone around me. But not for me. I am different today. I find myself in a place I have never been, and it is frightening. I have been told that I have breast cancer. I have breast cancer. Me.

On a Thursday morning in early October I had my yearly mammogram – in a pink RV! Size Enormous! The CSM Mobile 3D mammogram truck was parked in the Cedar Mills Medical Clinic lot, awaiting my arrival. I’ve giggled to myself more than once when I spot the RV (you can’t miss it – especially when the sun is shining, reflecting sparkling pink with the smiling ladies adorning the outside of it…after all who doesn’t smile in delight at the yearly chance to have our breasts compressed in a vice?!) I love the convenience of it; it comes to my neck of the woods regularly, and last year’s mammogram in the big pink RV went without a hitch.

My yearly mammogram was due this past August, but August was crazy hectic with helping our daughter settle in to her new apartment and job in Chicago, moving our son back to college in Ohio, getting our high school freshman to his daily football practices from our home in Cedarburg to downtown Milwaukee, keeping in close contact via cell phone to our oldest daughter who is in graduate school in North Carolina, being an on-the-scene mom to our “Little Caboose” – our six-year-old daughter, and working my part-time job as a nurse in the Emergency Department and the Recovery Room at CSM Hospital Ozaukee. October was calmer!!  

Well, mammogram done – checked it off my To-Do list. I went about my day, the weekend passed. On Monday, whilst making dessert bars with my youngest, the phone rang. Wiping off gooey hands, my heart did a little skip as I saw the call was from the CSM Women’s Imaging department. Uh oh! I have to come back for more imaging. Rats! Before hanging up, I am reminded by the caller that this is common, and that nine out of 10 call-back appointments result in negative findings.

Cutting to the chase, I did indeed go for that call back appointment – which consisted of several mammograms of my right breast, from various angles…waited…was then asked to “please follow me down the hallway because the radiologist would like to do an ultra sound”…gulp! I could feel my face getting hot, butterflies in my gut, heart starting to race and skip a few. The radiologist and radiology technician were wonderful, kind, matter-of-fact: “Kathleen, we do see an area that looks very suspicious as being a breast cancer. It is new, no sign of it last year. I’d like to schedule you for a biopsy.”

CSM's Mobile 3D Mammography Coach

Well, the biopsy was done yesterday. Once I finished registering, I was met by a member from the Woman’s Imaging Department, and, for the rest of my experience, I was not alone! The biopsy was done with the utmost care, competence and kindness. Every person in the procedure room was pleasant, compassionate and caring. Great care was made to ensure that I was warm, positioned correctly, but comfortable, and the radiologist explained how the breast tissue sample was obtained in a clear and confident manner.

How nice it was to feel the nurse hold my hand during it all, such a simple act, but one that meant so much to me then and now!

Once done, I was accompanied out to the hospital lobby by the same nurse that had been present during the biopsy, the same one who held my hand (again, someone literally walked along with me, I was not alone!) She explained that once the tissue sample was analyzed by the pathologist, I would be called with the results of the biopsy, and to expect that call this afternoon.

Well, that call did indeed come this afternoon, from a calm and patient nurse, who took all the time I needed to process this definitive news. I was told that this appears to be early, and it is highly influenced, fueled, by hormones. Next week I will meet with the entire team who is going to help me – surgeon, oncologist, radiation oncologist, geneticist and nurse navigator.

Hanging up from that phone call today, I turned to my Number One Ally, my Best Friend, my Faithful Fellow, Tim, My Dear Husband. He gave me a warm and long hug. For those moments today, wrapped in his arms, my mind stopped spinning, and a prayer, a gift, formed in my mind: Tim is with me, and Jesus, You are with me. I am not alone. All is going to be okay.

 


 

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