Evonne’s Story

Site created on June 4, 2023

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Evonne's Lymphoma Journey



I Wish It Was a Kidney Stone: Those of you who know me well likely know that I have had recurrent kidney stones since I was 21. These are horribly painful in a "pray for unconsciousness," throwing up from the pain, and curled in the fetal position kind of way.  The only positive thing about my 14+ kidney stones is I have pretty robust pain tolerance ---with kidney stones a "10 " for pain, childbirth maxed out at a 7 for me.  When I developed kidney pain on April 22, 2023, I went to the emergency department (ED) thinking it was another kidney stone.  Medical imaging found stones in my kidneys and some lymph node inflammation and determined I likely had a combo of kidney infection and a recently passed kidney stone. When the pain increased to kidney-stone-intense levels, they determined it was likely a kidney stone moving, so I was given Norco and began drinking water like it was my job. Two weeks, cases of water, and lots of Norco, heat pads, ice packs, and TENs unit use later, I returned to the ED due to intolerable pain. There they did a CT with contrast and ultrasounds. 
 
It was a clementine-sized enlarged lymph node mass pressing on the nerves for my pancreas and kidney (mimicking simultaneous kidney stones and pancreatitis).
It was not a kidney stone.
It was lymphoma.
 
I never thought I'd wish to have a kidney stone instead!
 
Inpatient Hospital: Lettinga Cancer Care Unit: Two days after learning of the likely lymphoma, my mother (Dianna Foster) moved in from Iowa -- having her here has been a godsend in so many ways! In this time, we also worked on next parts of the lymphoma work-up, including a PET scan on 5/16 (thank you Pine Rest insurance for not balking at that charge!). Unfortunately, my pain continued to increase too. By the night of 5/16, my pain had surpassed what my outpatient primary care physician was able to manage on outpatient so my mom took me to the ED. My pain was a 14 or 15 on a 1-10 scale* so they admitted me to the Lettinga Cancer Care Unit. The care on the unit was fantastic and my nurses were wonderful. I was able to get both my lymph node biopsy and my bone marrow biopsy done while inpatient for a week. I was also referred to palliative care**, who worked magic in managing my pain, nausea, and other symptoms, allowing me to return home on 5/22. 
 
*Those of you who know the statistics part of me may be surprised at the 15. After all, I have a magnet that says "Those who say they give 110% don't even understand statistics" -- so giving a number outside the range of a scale is not my M.O.  However, the pain was 5 "notches" worse than the worse kidney stone pain and if I rescaled my pain scale so that the new max pain was 10,  childbirth would then be a 5 --- and that's insulting to everyone who has experienced the pain of childbirth!
**I've since learned of the frequent confusion of hospice (providing care to the terminally ill or dying) and palliative care (to ease "suffering" in general). I was never in danger of dying. I was experiencing great distress/pain/nausea/other discomfort. Hence, I worked with palliative care not hospice.
 
Further May Updates:
Diagnosis: The pathology report, PET scan, blood work, CT scans, etc. determined that I have germinal cell diffuse large b-cell lymphoma (DLBCL), a type of non-Hodgkin's lymphoma. This type can respond well to treatment and has a high cure rate (yay!). It tends to have a late onset, with average age of onset between 65 and 70 (depending on the source).  It perplexes me how I managed to develop this at 25+ years younger than is typical (darn law of large numbers!), An important implication of this is that listed average survival rates are lower than is likely the case for me because age at diagnosis can be one of the factors most predictive of positive outcomes.  For more information, see the site below:
Diffuse Large B-Cell Lymphoma (clevelandclinic.org) (https://my.clevelandclinic.org/health/diseases/24405-diffuse-large-b-cell-lymphoma)
 
Stage: My bone marrow biopsy was clear and no scans found involvement/masses in the bone or other organs (yay!!).  Unfortunately, the PET scan found impacted lymph nodes on my right lower neck in addition to all over my lower abdomen. Together, this means I have Stage III. 
 
Bad News: 
-My lactate dehydrogenase (LDH) levels are higher than average (a poor prognosis indicator)
-The treatment is R-CHOP, which is a "brutal" course of chemotherapy (Eek!).
 
Good News:
-R-CHOP can have some great results and may shrink my lymph node masses enough after the 1st treatment to give relief/allows me to reduce my pain medications. 
-Genetic tests found I have germinal cell DLBCL, which is "more likely to respond to treatment" than other types. I don't have double-hit, triple-hit, or other changes/mutations that reduce treatment effectiveness or cause more aggressive types of lymphoma.
 
Treatment: Treatment will consist of R-CHOP, which is immunotherapy + 3 types of chemotherapy + prednisone. Each chemotherapy session will take 6-8 hours (ugh!!), followed by 5 days of prednisone. After that, there is a 2-week recovery period before the treatment is repeated. This cycle will be completed at least 6 times, for a total of at least 18 weeks of treatment.
R-CHOP - NCI (cancer.gov) (https://www.cancer.gov/about-cancer/treatment/drugs/r-chop)
 

Newest Update

Journal entry by Evonne Edwards

2023 was one of the hardest years of my life --- certainly the most challenging physically.  I'm thankful to get to see 2024, grateful for the treatments, physicians, family, and friends that have made that possible. 

I wrapped up my (hopefully!) last chemotherapy treatment at the end of September. By that point, my body was ravaged by the effects of chemo and my blood counts no longer reaching normal between treatments. My energy levels had dipped so low that my oncologist ordered an echocardiogram before my last treatment to check on my heart functioning. Thankfully, my heart function remained within normal limits despite being decreased by the effects of chemo (one of the most effective chemo meds is known to cause heart damage) and I was able to complete my last round. I continued to get intense headaches from the last of my chemo meds, so my oncologist also ordered an MRI to ensure we were not missing anything in my brain --- thankfully, that too was clear.

At the end of October, I had a posttreatment PET scan. Not only was it clear, but my Deauville score was 1. Deauville scores measure the update of radioactively-labeled glucose, are used to assess treatment response, and range from 1 (no/minimal uptake) to 5 (markedly increased uptake); generally, 4-5 = cancer, 3 = ambiguous, 1-2 = not cancer/no more metabolic activity than most tissue. I was at a 2 on my mid-treatment PET, so getting down to a 1 was great! At my October appointment, my bloodwork was also looking good.  I was officially declared to be fully in remission! While there are no guarantees and my chance of recurrence may be as high as 10-20%, my oncologist was pretty confident/hopeful that I will remain in remission and approved me to get my chemo port removed (scheduled for early February). 

The last two months has been a slow recovery. Chemo is a gift that keeps on giving and some days the litany of annoying and frustrating aftereffects can be discouraging. The most limiting and persistent symptom is low energy -- though slowly improving, I'm still quickly exhausted by even minimally physical tasks, like folding clothes and even moderate walks.  Yet chemo is a gift --- one that has absolutely saved my life.

I have returned to work part time and have slowly worked my way up to 25-30 hours/week. I'm hoping to be able to begin working my new "full-time" at 32-36 hours in the next couple of months. I am incredibly thankful for a job that I can generally do from home on low energy days and take breaks when my energy lags. My managers/supervisors have been amazingly supportive throughout this journey, and we continue to figure out what I'm able to do. I have not yet resumed seeing patients, but I hope to be able to do so early in the new year.  My mom has begun going home to Iowa for longer stretches -- up to 2-3 weeks at a time --but continues to help with the girls and assist Mark and me in preventing absolute chaos in our home when she is here. 

My delay in this update is reflective of my energy state -- between work and parenting and finding ways to take care of my health in this new normal, I often have little energy remaining. 

Instead of a year in review (which would be relatively short beyond my battle with cancer!), here is part of my gratitude list:

  • Being able to enjoy my daughter's birthdays before/at the beginning of this journey
  • A vacation a mere couple of weeks before the lymphoma pain began -- the trip to Virginia to see the historic triangle (Jamestown, Colonial Williamsburg, and Yorktown), go to Busch Gardens, and visit Mt. Vernon with the girls and my mom was full of wonderful memories to hold on to in the darkest times
  • A year of sacrificial care and support from my mom (and the loving support of my stepdad that supported this!)
  • The steady love of my husband
  • The best in-laws I could imagine -- supportive visits from my sisters-in-law and their families, care packages and endless support and wisdom from the lived experience of my mother-in-law, and the decades of clinical knowledge from my hematology-oncologist father-in-law
  • Pine Rest -- including the support of HR, benefits that helped keep us afloat in the months and months when I was unable to work, a CEO and CMO who called to check on me and help me how they could, wonderfully supportive managers/supervisors, and coworkers and current/former psychiatry residents who blessed me with brimming gift baskets, care packages, and meals. 
  • A community that gives generously and has a fund to help with cancer medical bills
  • Gilda's Club and the community it supports -- especially at the beginning and summer camp for our girls
  • Amazing family and friends who showered me with support, gave generously to my GoFundMe account, took my girls to school on early treatment days, checked in on me, sat with me on chemo days, encouraged and prayed for me as my hair fell out and body got ground down, and helped me and my family in ways I am still trying to wrap my head around
  • Timing of cancer that allowed me to avoid colds and flu season during active treatment and be able to spend needed time with family at Christmas
  • Lemmen Holton Cancer Pavillion -- the wise doctors and caring nurses who still walk with me, the palliative care team that ameliorated the endless symptoms from cancer and chemo, the oncology psychologist who guided me through the emotional turmoil of this year, and the myriad of perks and services provided
  • The many prayers of so many people
  • Our loving God and His consolation, healing, peace, comfort, and faithfulness

 

In a time that remains full of uncertainty, New Year's resolutions seem a bit foolhardy. Instead, here are my New Year's hopes: That remission will be sustained, my healing complete and 2024 will be a year not only free of illness/cancer but a year of health, balance, and recovery.

 

 

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