Hope in a binder

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Something you realize very quickly no matter what stage of cancer you are fighting is just how much paperwork you collect in a short period of time. In a ‘paper-free’ world, somehow cancer doesn’t take the hint.

The last week before I left for my California adventure was a flurry of record gathering. One of my top priorities to take a contract here was to get a second opinion so I came armed with envelopes of paperwork. I have so many consult and office visit notes, radiology results from PET scans, CT scans and MRIs, labwork, not to mention discs that contain the images from tests done at Atchison Hospital, Olathe Medical Center, and now at Scripps. Honestly it was overwhelming and they were everywhere in no particular order.

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I was given this binder by my palliative clinic co-workers. The story behind the binders is so inspiring!

When I first started working with my amazing palliative clinic co-workers one of the social workers told me to take home one of the general cancer binders we pass out to new patients at their first appointment. I know it sounds pretty cheesy, but I was actually pretty excited to take the wrapper off it and bring order to my chaos.

That night I rummaged through the boxes to get everything together and put all the reports and discs in their place. Everything finally had a home and it was so easy to find each page.

One of the first things I did when I arrived here in San Diego was begin the process of transferring all of my records for review to prepare for my first appointment with the oncologist I am working with here. Even though I knew I had submitted all of my records I came armed with the newly-filled binder. I figured I probably wouldn’t need it, but when you are meeting your new oncologist it never hurts to be over prepared.

When my oncologist was reviewing my chart at the appointment she was saw the reports from my PET scan in February. I asked what she thought of my followup scan in June. Imagine my surprise when she told me she didn’t see that in my chart. Never fear though! I had my trusty binder with me to save the day and I was able to whip the report out in the blink of an eye!

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I was given this amazing binder by my oncologist! It is such a great way to keep everything together when you have so much to keep track of! The flower was given to me by the volunteers at the cancer center I work for since I am a patient too. What an amazing place to work!

Before my appointment the breast cancer navigator gave me one of the breast cancer specific binders. It was packed with information about the different oncologists, treatments, support groups, and resources available to breast cancer patients in the San Diego area. While I could have easily found out these things by surfing the internet, I can’t begin to explain just how calming it is to have so much information at my fingertips.

That night when I got home from my appointment I transferred everything from the general binder into the breast cancer specific binder along with the resources that were inside of it. Everything has it’s own place and now I have a bit of order to my chaos. When I described the binder to my husband he was excited when I told him I would be re-gifting the general one to him for his own mounds of paperwork. Chronically ill people have enough paperwork to kill a small forest!

The palliative care clinic literally has boxes of these wonderful binders that had been donated. We give one to our new patients and I always feel a bit of pleasure to watch them walk out of the appointment with it in tow.

One of the things that I noticed that first night when I took the wrapper off of my binder was the note on the inside of the cover from the founder. I knew they had been donated to newly diagnosed cancer patients at Scripps, but I wasn’t familiar with the story behind them or what prompted such an beautiful act of kindness.

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The amazing story behind the binders I was given. I got to meet the founder today!

These binders were the brainchild of a fellow Scripps Cancer Center patient, Robin Rady following her own battle against breast cancer. She transformed a difficult situation into a chance to give back and help other people battling cancer find a little order as well.

My breast cancer binder was missing a couple of tabs and the calendar was out of date so I contacted the company to see if I could purchase those to add to my binder. Imagine my surprise when the email I received back was they would donate them to me and deliver them to me in person at work!

Today was very stressful for me because my radiation simulation appointment was scheduled for when I got off work but this gave me something to look forward to as a bit of a distraction from worrying about the unknown. Cancer is full of unknowns, and nurse or not it isn’t any easier. Fear doesn’t care who you are.

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I got the opportunity to meet the amazing women behind Metugo today! {L-R} my co-worker Amanda Quinard (Scripps Outpatient Palliative Care Social Worker), Liz Gitler (COO, Metugo), silly old me, Robin Rady (founder, Metugo)

When Robin and Liz came in they were both so warm and down to earth. They were so easy to talk to we could have been old friends from school.

Robin asked me how I was doing and about my treatment. When I told her that I was starting radiation but would be returning to Kansas soon to be with my family she told me to keep her posted about how I am doing.

Cancer is stressful, but thanks to this organizer I have one less thing to worry about. Learn more information about the inspiration behind Metugo:

Jewish American Heritage Month Local Hero Robin Rady Helps Cancer Patients Get Organized with ‘Binder of Hope’

Controlling the chaos of cancer

These two ladies will never know how much it meant to me that they took time out of their busy schedules to meet me personally. I will always look back on today as one of my fondest California memories!


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 2, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
Dx reclassified 10/1/2019, IDC, left breast, 1.9cm, Nottingham Grade 1, HR+, ER+/PR+, HER2-, BRACA-, PIK3CA+, Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
PET Scan 2/22/2019 Breast tumor showed no appreciable FDG uptake (essentially inactive), mets to bone improved from MRI
CA 27.29 5/2/2019 39 (goal <38)
CA 27.29 6/27/2019 53 (goal <38)
PET Scan 6/28/2019 Activity in breast that suggested new or recurrent disease, activity in skeletal lesion appeared to mostly regressed slightly since prior PET scan
Surgery 7/1/2019 Left breast lumpectomy with biozorb placement
First CA 27.29 post surgery 7/25/2019 55 (goal <38)
CA 27.29 8/22/2019 46 (goal <38)
CA 27.29 9/27/2019 77.9 (goal <38.6)
PET Scan 10/5/2019 Low level uptake is surrounding postsurgical changes in the lateral left breast, with interval resection of small spiculated lesion since the outside PET scan. Mediastinum as well as the contents of the abdomen and pelvis within normal limits. The tracer localization within the skeleton is uniform and mild, in spite of the widespread evidence of lytic and blastic metastatic disease.
CA 27.29 10/25/2019 78.7 (goal <38.6)

It’s about how you live

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It’s ironic that I am here to celebrate National Hospice and Palliative Care Month both as a nurse, but as a patient too. I think it really is a shame that more isn’t taught about this amazing field in nursing school, or at least in my own personal experience.

I have heard of Hospice month. For some reason in my nine years as a nurse, Palliative Care month was not something I had ever heard of. I would like to share the email I sent to my wonderful co-workers to celebrate the month as my way of expressing just how important this month really is to me.

I want to take a moment to thank all of you in honor of National Hospice and Palliative Care Month. ‘It’s About How You Live.’ What we are doing is helping the patients we work with live the best life we can for as long as they can. This genuinely is a calling, and the work we do really is so important. It is funny how much your perspective changes when you are on the other side of the stethoscope and the other side of the bed. I used to get frustrated with the difficult patients I came across. Now I see myself in almost every patient I have worked with. I can empathize with their fear, their pain, and their uncertainty.

The morning of September 25, 2018 I had radiating back pain. I was supposed to have my gallbladder out ten years ago and that actually was what I was worked up for. Cancer was a purely incidental finding. That morning I was a full-time hospital bedside nurse (in women’s health, how ironic), a full-time student pursuing a bachelor’s in sociology, and a wife and mom to three kiddos. That afternoon I was told I had an ‘undetermined’ form of cancer (initially believed to be multiple myeloma). Within a week I was in so much pain from broken vertebrae that I was barely able to get out of bed, unable to eat, and my middle daughter who is a nurse’s assistant was caring for me. When I was officially diagnosed with metastatic breast cancer on October 12 I was devastated. As a women’s health nurse I knew what those words really mean and what the statistics say. The word ‘hospice’ was actually discussed and to be completely honest, I never expected to work as a nurse again which broke my heart because I love what I do and I worked very hard to become one late in life (I was 36 when I passed my boards).

When I was cleared to work again, taking a travel nursing contract in California was on my bucket list. This was something I had planned to do for a few years when my kiddos were grown. This was a chance to go somewhere new, try something new, and also consult with other doctors for my own health. I expected to come out here as a hospital nurse as I have been since beginning my nursing career. Palliative care in a clinic wasn’t even on the radar. When this was presented to me I wasn’t sure what to think, but my interview sold me on it and I was ready for a new adventure. I was incredibly nervous when I was brought on board. A new city (a huge city to boot), a new house by myself for the first time in my life (no joke, I’ve never lived alone before), a new job in a new hospital, a new charting system and a different work environment was daunting.

I want to thank all of you for your patience with me as I learned everything from scratch, and thank you for putting up with my 90-million sometimes stupid questions. Some days I felt like I was starting from scratch as a baby nurse, but you guys always were welcoming and understanding and made me feel like one of you. I had originally planned on taking a personal day on my one-year anniversary of finding out I had cancer to sit on the beach drinking a strawberry daiquiri, but I couldn’t do it. I realized I loved our work and our patients as much as you do, and I couldn’t imagine spending it any other way than in our clinic seeing patients and eating a lunch with my co-workers.

I’m going to be honest, working in this clinic is sometimes hard on an emotional level. I realize I am looking into my future and one day I will be in the same place our patients are at facing some very difficult choices. I also I know I wouldn’t change this for anything. I come home exhausted physically and emotionally every day, but I also feel proud because I feel like I have made a difference in someone’s life. I believe that what I am doing is helping people in my shoes find comfort in even the smallest ways. Thank you all for your concern whether I was doing okay with my own health (which I am!).

I’ve worked with so many doctors, nurses, social workers, and other health professionals in my eight years as a nurse but I can honestly say I’ve never worked with a group of people who are so passionate about what they do. I’ve seen how much the tough patients effect you when things take a turn for the worse, and the pleasure you take when you see the patients who are doing well. Please believe me when I say from personal experience, you change lives every day. Thank you more than you know for allowing me to become a part of that, even if only for a short time.

I have one more month with you all and I will enjoy every last day of it. Thank you for being the best part of my bucket list, and thank you for allowing me the opportunity to make a real lasting impact as a nurse every day.

Happy National Hospice and Palliative Care Month to all of you!

This genuinely is a calling. We make a difference everyday. I make a difference everyday. If this is the final stop in my career, I will view this as an amazing swan song.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 2, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
Dx reclassified 10/1/2019, IDC, left breast, 1.9cm, Nottingham Grade 1, HR+, ER+/PR+, HER2-, BRACA-, PIK3CA+, Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
PET Scan 2/22/2019 Breast tumor showed no appreciable FDG uptake (essentially inactive), mets to bone improved from MRI
CA 27.29 5/2/2019 39 (goal <38)
CA 27.29 6/27/2019 53 (goal <38)
PET Scan 6/28/2019 Activity in breast that suggested new or recurrent disease, activity in skeletal lesion appeared to mostly regressed slightly since prior PET scan
Surgery 7/1/2019 Left breast lumpectomy with biozorb placement
First CA 27.29 post surgery 7/25/2019 55 (goal <38)
CA 27.29 8/22/2019 46 (goal <38)
CA 27.29 9/27/2019 77.9 (goal <38.6)
PET Scan 10/5/2019 Low level uptake is surrounding postsurgical changes in the lateral left breast, with interval resection of small spiculated lesion since the outside PET scan. Mediastinum as well as the contents of the abdomen and pelvis within normal limits. The tracer localization within the skeleton is uniform and mild, in spite of the widespread evidence of lytic and blastic metastatic disease.
CA 27.29 10/25/2019 78.7 (goal <38.6)

A glimpse into my world

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La Jolla Cove, La Jolla, California

The sun and sand of California is a beautiful and healing backdrop when you are battling cancer. The views are amazing and the weather can’t be beat.

I’ve been so incredibly blessed to have been given this opportunity these past few months. I have a job I love with the most amazing co-workers. I live in a beautiful cottage in La Mesa with some really great landlords. And the medical care I have had here has been so terrific. In many ways it is like this was meant to be.

I’m a little stressed out today thinking about tomorrow and the radiation sim appointment so I figured I would distract myself from that by sharing a glimpse of the life I live here in sunny SoCal and the trip it took to get here.

The last week of August was a flurry of packing and honestly it didn’t really sink in that I was leaving until the last morning as I loaded my car up. I’ve never lived alone, let alone over 1,500 miles away from any family or friends. As I finished packing up it finally hit home, and I’m not going to lie, I almost changed my mind.

I left Atchison around 9:00am Central time. My original plan was to stop somewhere in New Mexico to sleep for the night, but as I got to Albuqueque, New Mexico at 9:30pm I decided to push on as long as I could in hopes I could make it to my baby sister’s place so I could spend an entire day with her, my brother-in-law Thom and niece Joslynn instead of just a few hours. It was a crazy long day but I pulled up to their place around 2:00am Arizona time (4:00am Atchison time for the record).

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My sister was staying in Williams, Arizona when I traveled through. What a cute little town that really is! It is on historic US Route 66, and there are so many little shops and places to see. The show they were working was a fun place with lots of things to see and I ran into a guy that was from Kansas City. He was quite the talker and we chatted quite a bit about the Kansas City Chiefs and the terrific barbecue to eat there. Each night the Cataract Creek Gang has a gunfight downtown and I got to catch the end of the show with the girls.

Saying goodbye was hard, but I pulled away Sunday morning for the final leg of my trip. It was another long day, but hey, I got to drive behind the Oscar Meyer Weinermobile for about 100 miles so I guess you could say it was eventful. (Insert crazy laugh here!)

When I finally made it to the beautiful city I was excited. I finally made it to the Mount Helix neighborhood where I was going to live for my contract and was amazed at how stunning the views were. When I pulled up my landlords were waiting and they were really such a great couple. They even helped me unload my car and bring things up to the cottage for me.

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I had only seen the cottage in photos so I wasn’t entirely sure what to expect. I was so surprised when I got inside. It really is the cutest little place and I can’t believe what a great deal I got. Completely furnished and all my utilities included for a super low price. It honestly has been such as relaxing place to call my own these past three months.

It is hard to believe I am so close to the center of the city here. It is so quiet except for the sounds of the owls who-ing and the coyotes that wander through the yard. One night when I was in bed watching TV before I went to sleep I heard a lapping sound outside. I went to my door to see two coyotes drinking from the bird bath and they scampered away when I turned the light on.

I have a sliding glass door in my bedroom and one in my living room that I keep open most of the time I am at home and the gentle breeze feels great. It is a rare occasion when I turn on the air conditioner. The fresh air feels so much better than the air conditioner ever did.

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I live only a few miles away from Grossmont Center which is a gorgeous outdoor mall. Most all of the stores I would want to go to are in there and I can say I have seen my very first two-story Walmart and Target. There are actually escalators for your shopping cart so they can get to the upper level. What??? It is just a really cool place to go.

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And the beaches. The beautiful beaches. When I first got here I spent so much time walking barefoot on the beach with the water splashing on my feet. There is nothing more healing than listening to the water and seeing the birds walking around not caring that people are around them. I absolutely love the beach so much.

One of my regrets is that once I started working I was so tired each night that I haven’t been to the beach since the first week I was here. I get home and literally collapse on the couch or my bed and am just drained. 😦

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I love where I work so much. The Torrey Pines clinic is gorgeous and has so many places to sit outside. We’ve had meetings out there, and eating lunch out there under the trees is such a nice way to spend the lunch hour. Sometimes I still can’t believe I was lucky enough to work here.

img_0617It’s been a wonderful experience and it’s hard to believe I’m down to my last month here and I will be heading back to Kansas soon. Today it’s been hot and sunny. When I get back to Kansas it will be snowy and cold. My poor body won’t know what to do with itself. This afternoon the neighbors around me have been swimming in their pools. Back home it is a sultry 40° right now.

As much as I love the city, I do miss my family dearly. It will be worth braving the cold and snow to spend time with them again. I will be home just in time for Christmas shopping and spending the holidays with the ones I love.

This has been an amazing adventure and one I wouldn’t trade for the world. In a life that has become somewhat uncertain, this has been the opportunity of a lifetime and I will treasure it always.

For today, we aren’t in Kansas anymore, but soon enough I will be!


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 2, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
Dx reclassified 10/1/2019, IDC, left breast, 1.9cm, Nottingham Grade 1, HR+, ER+/PR+, HER2-, BRACA-, PIK3CA+, Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
PET Scan 2/22/2019 Breast tumor showed no appreciable FDG uptake (essentially inactive), mets to bone improved from MRI
CA 27.29 5/2/2019 39 (goal <38)
CA 27.29 6/27/2019 53 (goal <38)
PET Scan 6/28/2019 Activity in breast that suggested new or recurrent disease, activity in skeletal lesion appeared to mostly regressed slightly since prior PET scan
Surgery 7/1/2019 Left breast lumpectomy with biozorb placement
First CA 27.29 post surgery 7/25/2019 55 (goal <38)
CA 27.29 8/22/2019 46 (goal <38)
CA 27.29 9/27/2019 77.9 (goal <38.6)
PET Scan 10/5/2019 Low level uptake is surrounding postsurgical changes in the lateral left breast, with interval resection of small spiculated lesion since the outside PET scan. Mediastinum as well as the contents of the abdomen and pelvis within normal limits. The tracer localization within the skeleton is uniform and mild, in spite of the widespread evidence of lytic and blastic metastatic disease.
CA 27.29 10/25/2019 78.7 (goal <38.6)