“Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.” – Shelly
Shelly originally started her CaringBridge site in August 2016. She composed a draft journal entry that day but never posted it. She continued to use Facebook to keep her friends updated and her CaringBridge site has been dormant since then. I posted her original journal entry so you can see what she was thinking back then.
At the beginning of 2020 things took a turn for the worse and she has not been posting regular updates on Facebook or anywhere else. It has become more burdensome for me (Todd, her husband and primary caregiver) to keep people updated. Since I’m not on any social media platforms I’ve reactivated her CaringBridge site to provide updates to those who care about us.
Social media posting is new to me and I’m not sure where to start. I decided that since this is “Shelly’s Story” I would give you a chronological view of where she started her cancer journey, what’s she’s been through, and how she’s doing now. If you know me, you know I’m an avid note taker, am detail oriented, and worked as a technical writer. Believe it or not, the historical content below is a condensed version of my notes! I’ve taken Shelly to every doctor visit, procedure, and treatment since she started her cancer journey in 2007 (except for a few short appointments she wanted to go to by herself). She is my number one priority in life, I love her dearly, and I am thankful to have her as my wife.
If you want the historical perspective on her cancer journey, you can begin by reading her story below and then continue with the Journal entries in order (sorted from Oldest to Newest). If you prefer, you can go straight to the Journal entries for 2020 for updates from this year and come back to this story later and the previous years.
Tip: To read the Journal entries in chronological order, sort them from "Oldest to Newest" until you get caught up.
Note: After composing this information offline I learned that there’s a character limit for the “Shelly’s Story” content. Therefore, I’ve had to break up the history of Shelly’s cancer journey between this story section and the Journal entries section.
Yes, I’ve been accused of being too verbose many times before. It’s taken me some time to compile this information and I wanted to share the full story of Shelly’s cancer journey with you. I hope it gives you a glimpse of what we’ve been through these last 13 years, perhaps brings you closer to her, and is beneficial to some of you too.
This cancer journey is not one we chose when we made plans for our lives together, but it’s one that has brought us closer together as partners in life. So, grab yourself a beverage and perhaps some tissues too, and read on.
3/5/2007 – After scratching an itch and finding a lump in her right breast on 2/20/2007, Shelly had a needle biopsy done. Testing revealed that the lump was cancerous. This was the beginning of her cancer journey.
3/8 – 9/26/2007 – Shelly has lumpectomy and lymph node removal surgery (16 lymph nodes removed). She opts to participate in a clinical trial (NSABP B-38) to help improve the standard results for others. She has a mediport (a surgically implanted venous access port) installed, 8 rounds of chemotherapy (4 of Adriamycin [doxorubicin] & Cytoxan [cyclophosphamide] and 4 of Taxol [paclitaxel]), and 36 radiation treatments. During this time she has many different tests done, loses her hair for the first time (the hardest), has typical chemotherapy side effects (nausea, vomiting, diarrhea, fatigue, low blood counts, etc.), has radiation burns and scarring on her upper right chest area, is afflicted with neuropathy (numbness in hands, fingers, feet, and toes) and lymphedema (in her right arm and hand), and a few ER visits and hospital stays. The chemo treatments include getting white blood cell (WBC) booster shots (Neulasta [pegfilgrastim]), which cause lots of bone pain since it stimulates the bone marrow to create white blood cells. At the end of all this, her tumor markers (CA 15-3 and CA 27.29) are normal again and her breast cancer is considered cured.
10/2007 – 12/2013 – Shelly has regular follow up visits with her oncologist, every 3 months at first and then every 6 months, and starts taking Tamoxifen (a cancer prevention medication). Since she’s participating in a clinical trial, her follow up visits are more frequent than they normally would be. She has her mediport removed since it wasn’t working properly (could not be used for blood draws, only IV treatments) and she didn’t need it anymore. Every pain, ache, or ailment raises the concern that her breast cancer has returned but all related tests and procedures are normal, her mammograms are clear, and her tumor markers remain in the normal range. Her hair grows back in (curlier than before), she has lingering neuropathy in her fingers and feet, and calls her radiation scar a “badge of honor” as a breast cancer survivor. She’s switched from Tamoxifen to Femara [letrozole] as a long term cancer prevention medication. Her kidney function declines, she sees a nephrologist, and she’s diagnosed with borderline stage 3 chronic kidney disease (CKD), due to side effects of chemotherapy and taking too much ibuprofen for pain instead of narcotics. She doesn’t need dialysis, just cannot take ibuprofen anymore or have IV contrast dye with any future CAT/CT scans to protect her kidneys from further damage. After reaching the 5-year survivor mark, Shelly has reconstructive surgery to restore her body image and self-esteem. She’s afflicted with the CMV and EB viruses, other typical middle-age ailments, has required age-related medical tests, and continues to live a happy productive life as a thankful breast cancer survivor.
6/19/2014 – At Shelly’s 6-month follow up oncologist visit her tumor markers are elevated beyond the normal range (they were fine on 12/5/2013). In the ensuing weeks a PET scan is ordered and reveals spots on her liver, right lung, and abdominal lymph nodes. She then has an ultrasound guided biopsy of the spot on her liver that tests positive for cancer. She’s diagnosed with stage IV metastatic breast cancer, a chronic condition for which there is no cure.
7/2014 – 5/2015 – Shelly has a new port surgically implanted (this one works perfectly!) before beginning chemotherapy to preserve the veins in her left arm, which is the only arm they can use for needle sticks and blood pressure checks. She receives 4 IV chemotherapy treatments of Cytoxan and Taxotere [docetaxel], which increase neuropathy and cause hand-foot syndrome. She loses her hair again (2nd time) but instead of letting it happen to her, she decides when to go bald (cut it all off) after it starts to thin. Todd suggests they do something fun before he shaves her head so he gave her a Mohawk haircut. She nearly falls off her seat from laughing so hard when she sees herself in the mirror! It was lots of fun and very liberating for Shelly. Her “Risky Business” sock slide on the hardwood floor ends with a crash landing, an ER visit, and results in a fractured wrist, which takes longer than normal to heal due to ongoing chemotherapy. She switches from IV chemo to oral (pills), targeted therapy chemo medications (Aromasin [exemestane] and Afinitor [everolimus]), which have less severe side effects. The goal is to control and contain the cancer (no growth or progression, ideally remission) while providing the best quality of life. It’s more about learning to live with the cancer rather than getting rid of it. She’ll take the oral medications until they stop working and then we’ll try something else. Like other diseases, cancer can mutate and change over time and become tolerant of and resistant to the medications used to treat it, necessitating a change in medication/treatment. Shelly has monthly follow up visits with her oncologist and regular PET scans to monitor her cancer status. Zofran [ondansetron] is prescribed to relieve nausea (she always has some with her from now on), she responds well to treatment and her cancer is under control and technically in remission. Her hair grows back again, she develops chronic sinus-related issues, and has sinus surgery to resolve them (like many others do).
6/18/2015– Shelly’s PET scan reveals cancer progression back to the level it was a year ago. Oral medications have stopped working, time to make a change. It feels like we got kicked in the gut and are starting all over again.
(The historical perspective of Shelly’s cancer journey is continued in the Journal entries section.)