Casey’s Story: Starting Treatment

Casey is a two time breast cancer survivor who is sharing her experience during her proton therapy treatments at Provision CARES Proton Therapy Knoxville. Catch up on her story first by reading part one and part two of her blog series. As a Care Coordinator for Provision CARES Proton Therapy Knoxville and going through radiation therapy for the first time for recurring breast cancer, I can absolutely say that radiation therapists are gems…each and every one of them.

After initial office visits, CT Simulation, and treatment planning are finished it is time to start radiation therapy and these folks, the radiation therapists, are right there in the trenches with you. For the next 7 weeks I will see these wonderful people day in and day out to “finish off” this breast cancer.

Working at Provision gave me a sense of calm about the end result but to be candid, I was still nervous about the process.  Would I know what to do and say?  Is it weird to just lay on the table and be alone while radiation is being delivered?  What does it feel like?  Will I be self-conscious being exposed from the waist up?

Trust me when I tell you these therapists are experts at what they do. Zane, who manages the radiation therapists, was present for my first day.  He explained everything to me as it was happening which was particularly helpful to me. A quick example:  Zane explained body positioning, and how important it was to relax while being still. Proton therapy is very individualized which means no two plans are alike.  Your plan is specific to your tumor size and site, your physical body size and contours and believe it or not, your breathing!  These radiation oncologists and physicists think of everything.  

After putting on a gown you are escorted to the treatment room and use a step stool to get on to a slightly raised table.  In my case, radiation was going to be delivered with my arms above my head while I was lying flat with my knees slightly bent and supported.  There is a mold for my arms to rest in that was made specifically for me.  I remained covered up with a sheet until it was time for the actual treatment which was important to me.  The next and maybe most appreciated step for me:  MUSIC! It was calming and an immediate source of comfort for me.  The therapists will ask you each day what you feel like listening to that day.  This was a godsend to me as the music eased my nerves and passed the time.  

I was unprepared for, but very impressed by, the perfection in positioning the therapists strive for.  This is of utmost importance as the precise delivery (within a millimeter) of the proton beam depends on it.  Before your actual treatment, one of our Radiation Oncologists will check the position of the patient and give the okay for proton delivery.  The therapists leave the room and you are alone for about 90 seconds during treatment.  You are never truly alone as you are being watched remotely, and after a few treatments you become very accustomed to the whole process.  

Truthfully, it is a very quiet and calm time in the treatment room.  There were no smells or sounds to really get used to and I did not “feel” the radiation delivery.  For me, it was a time of reflection…a time to really think and appreciate what these fine folks do day in and day out.  I never got the feeling that it wasjust a job for them.  I always felt like I was the only patient there that day when in reality, there were up to 80 patients being treated in three treatment rooms.

Weekly visits with the clinical team are also part of your radiation therapy treatment.  This is an important step in monitoring your skin and any other changes you may be going through such as fatigue.   As I proceeded through treatment my only symptom was a significant “sunburn” to the areas treated.  I was prepared for this and used creams and lotions that were suggested by my doctor.  It was an easily forgotten side effect for me, though uncomfortable for a short period of time.  

Every Friday I was given a treatment schedule for the next week.  Wait, no weekends?.. a whole two days without radiation treatment?  I wondered “What will I do without the conversations and encouragement from Amos, Chris, Jamie and Jennifer?”  They were my people.  My lifesavers. My friends.  I can do this, and I will do this with the help of these compassionate, kind and relatable therapists.

To follow Casey’s story, please follow us on Facebook.

Casey’s Story: Preparing for Treatment

Casey is a two time breast cancer survivor and care coordinator at Provision CARES Proton Therapy Knoxville.  She answers phone calls and helps answer the questions of cancer patients every day, but with her experience on both sides of the phone, Casey is offering readers a unique perspective as someone who has been both a patient and someone who helps patients.  To meet Casey, you can read part one of her blog series, Casey’s Story: Learning she has cancer for a second time

After all my tests and scans were complete, it was definite.  Dr. Brig, my medical oncologist, told me I would have radiation therapy as part of my treatment protocol to make sure I never see this breast cancer again.  My doctor knew that I know how important of a role proton therapy will play in my life with left sided breast cancer.  Was I excited to undergo 34 radiation treatments? Not at all.  Was I anxious about the possible side effects and time involved?  I knew I would be tethered to Knoxville for the next 6.5 weeks, with only weekends off in between treatments.  I mean, several months ago, I actually had a life!  I regrouped and breathed a sigh of relief because I knew I would be in good hands at Provision.

A consult with one of our radiation oncologists is always the first step.  A care coordinator that I have worked with for the past 2 years quickly gathered all my medical records and set me up to see Dr. Ben Wilkinson who spent time with me explaining how many fractions (treatments) of radiation I needed and how it may affect  the skin around my left breast and axilla area, as well as my fatigue levels throughout treatment.  He reassured me that he would be checking me weekly, right after one of my treatment days.  Brittany, one of our awesome nurse practitioners, would also check my skin regularly.  No stone would be unturned.  If I needed anything, I knew who to ask.

Very shortly after consult I had what is called a CT Simulation.  This is essentially a scan of your body to provide the contours needed for treatment planning.  It took about an hour which was a bit longer than I expected in a slightly uncomfortable position with my arms above my head and lying flat on the table.  Kerry, one of our incredible radiation therapists, made this procedure seamless for me.  Not only is she an expert at what she does but she cares…and shows it in her disposition and heart-warming smile.  A physicist, Sammie, was also present to help with body positioning and placement.  We all know Sammie to be brilliant, energetic, beautiful and funny.  She was one of many who would be making sure I never see breast cancer again.

After CT Simulation, I waited.  I waited for these committed, hardworking, all knowing people behind closed doors of Provision Cares Proton Therapy to plan my treatment.  They are a team of radiation oncologists, dosimetrists, physicists and radiation therapists.  Not your average run of the mill people, but exceptionally trained and smart folks.  All of whom are working on a treatment plan for me to be able to continue living my best life.  It is truly humbling to me to be surrounded by such intelligence and excellence.  It is fun too…. we laugh a lot at work and we appreciate each other.  Not a bad gig for this girl.  I love coming to work.

In the meantime, I patiently waited for my start date and appreciated all the hard work that brought me to this point in my interaction with Provision from a patient’s viewpoint.  Many, many people got me to this point.  The Finance/Insurance teams who work tirelessly to verify insurance benefits and fight for coverage….the Concierge team who coordinate countless appointments and make sure you as a patient are up to date on where you are supposed to be and what time….and our fabulous Hospitality team who treat you and your family members like guests in their home.  What we call our “Culture of Care” is experienced in all facets of care at Provision.  We know it is a hard time…a scary and challenging time, for many patients and their loved ones.  We want our patients and their families to feel respected and cared for.  I always smile when I peek downstairs at our lobby and see patients having coffee and chatting…after their treatment is finished.  It is a beautiful thing. The next step for me? Starting my treatments.

To continue to follow my journey and read updated blog posts, please follow Provision on Facebook.

Casey’s Story: Learning She Has Cancer for a Second Time

I have always considered myself a normal girl with a fairly normal life.  Married to a great guy. I am healthy and active with 3 kids and a precious granddaughter who, along with my husband, are the loves of my life.   We have lived in Knoxville for the past 18 years and feel blessed to have found this great part of East Tennessee to work, raise our kids and find wonderful friends.  I have been working at Provision for two years now as a Care Coordinator, a position that I feel very comfortable with since I am a breast cancer survivor and can easily empathize with the patients. Recently, after two years at this job I love, I was again diagnosed with breast cancer.  Although I have never blogged a day in my life, when presented with the opportunity to share my journey and my point of view from both sides of treatment, I thought it would be another way to help others facing cancer and radiation therapy – and for that reason, I was all in.

In 2012, while busy raising my then young teenagers, I was diagnosed with early stage breast cancer. My particular diagnosis required a bilateral mastectomy and reconstruction, and subsequent  chemotherapy and immunotherapy.  Relatively straightforward and at times challenging, but doable.

As a Care Coordinator, we are often the first person an individual who has been newly diagnosed with cancer or a concerned family member or friend speaks with when they call Provision CARES Proton Therapy for information.  Almost always, this person is anxious, scared and uninformed about their illness.  We do our very best here at Provision to provide a compassionate ear while collecting patient records and facilitating a consult date so that our radiation oncologists, clinical nursing and radiation therapy teams can address the patient’s treatment needs in a timely manner.

To hear for the second time in 6 years, “you have breast cancer” is enough to rock anyone’s world.  I heard this news in the fall of 2018. Now, this mom of 3 children and one beautiful 6-year-old grandchild, was full of shock, fear and dread of what was in my immediate future: a whole lot of treatment that would NOT BE FUN and would cause me to again, lose my hair and my energy.  And then maybe eventually… my life.  We knew nothing at this point only that here we were AGAIN.  It was a very dark time for my family.  And for me.

Once the shock wore off, the Care Coordinator part of me began to surface. I knew immediately what I had to do to combat this disease for the second time.  After a bilateral mastectomy and reconstruction in 2012, along with chemotherapy, I realized that radiation therapy would be in my immediate future.  Recurrent breast cancer requires and arsenal of incredibly bright practitioners, along with state-of-the-art drugs and treatment.  I knew right away that with left sided breast cancer, Proton Therapy is the recommended treatment in order to spare the heart and lungs from unnecessary radiation exposure.  I knew that we (Provision) had a brilliant clinical team and a caring and conscientious support staff, state of the art technology and extensively trained radiation therapists.

This was not going to be a sprint…. but more of a marathon.  As a former triathlete of 30+ years, I tend to think of things in segments or parts.  Chemotherapy was the swim portion of the race.  I hated getting in the pool, but knew I had to put the time in.  Biking is fast and deliberate, and I related that to my surgery.  Let the surgery be seamless and without complications  (no bike wrecks).  Get that cancer outta there!   The last part of a triathlon is the running segment and I compare that to my upcoming radiation treatments.  At this point you are tired and simply want a cold drink and some shade. But one must push on at this point and finish strong.  Just like you surround yourself with training partners you trust and who make you feel good about your efforts, the same is true for your radiation treatment team.

I knew, without a doubt, that I would be well taken care of at Provision from start to finish.  With all of this in mind, I also feel that everyone’s cancer journey is different.  In this series of blogs, I’m sharing a little peek into my journey which I hope will give you or a loved one faced with a cancer diagnosis some peace of mind and maybe a smile along the way.

To continue to follow my journey and read updated blog posts, please follow Provision on Facebook.