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.
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!
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.
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.
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:
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!
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)