Stories of Hope

Randi, Non-Hodgkin Lymphoma Survivor

Randi, Non-Hodgkin Lymphoma Survivor

I didn’t realize it at the time, but my lymphoma story began on 9/11. Yes, September 11, 2001. I had just moved across the country to a small mountain community and had brought my young children for their first appointment with our new family doctor on that day. Before we left, I asked the doctor to feel a large lump I had discovered under my rib. Even I knew I shouldn’t be able to palpate my spleen and he concurred.

When a CT scan showed nothing other than a huge spleen, he referred me to a hematologist/oncologist. I did not like the sound of that. I was 51, my kids were 12 and 14. In addition to having just completed a major move, my beloved dog had died of lymphoma 6 months earlier.

I didn’t realize that just about the only thing that would cause a spleen to triple in size was low-grade non-Hodgkin lymphoma. So I had the normal reaction to hearing a cancer diagnosis while I was feeling just fine: “REALLY?!?!?! This is not possible!” But in hindsight, it was possible. Even though not necessarily causal, I sure had some risk factors. Dark hair dyes during the 70’s, Hepatitis C, 15 years of large beautiful lawns treated with Roundup. (Sure didn’t do my dog any good.)

I opted for a splenectomy as we didn’t have a clear diagnosis, I had hepatitis C (which was likely one of the factors behind my lymphoma) and knew treatment could kill me. Watch and wait was the protocol for me. I was referred to City of Hope and we decided the best course of action was to try to clear the hepatitis. No easy task, seeing as in those days the only treatment was interferon/ribavirin. This was often grueling and generally unsuccessful but in my case, after a miserable year of treatment, I cleared the virus.

This meant that if necessary, I would now survive future chemotherapy. An added bonus- the interferon treatment put me into an 8 year remission!

During this time LRF connected me with 3 buddies. We all were stable and on watch and wait. One by one (me first), we all got sick and needed aggressive treatment. We are all fine and still in touch decades later.

I continued to have annual bloodwork and checkups with my amazing hematologist/oncologist, Lauren Pinter Brown at UCLA. I was volunteering in the emergency department at UCLA and would occasionally meet and assist other patients of hers.

I was very comfortable monitoring myself – I knew every lymph node intimately and knew that if/when I got sick again, I would know it before anything showed up in the lab work. And I was right – I noticed an enlarged node in my thigh, so instead of the usual annual appointment schedule, we made an appointment for 3 months.

That wasn’t soon enough – within 6 weeks I was sick as a dog with extreme dehydration and excruciating back and leg pain. Even though bone marrow and lymph node biopsies showed the normal follicular lymphoma histology, my disease had exploded. I was treated as one would be for transformed non-Hodkgin lymphoma – my MRI lit up like a Christmas tree. I had tumors throughout my spine and have no doubt that I’d have been paralyzed at best without immediate treatment. Treatment consisted of R-CHOP followed by spinal injections of methotrexate every 3 weeks. I would come in through the emergency department where I had volunteered for spinal injections and it was wonderful to have my emergency department family with me.

My actual family was amazing as well, all incredible caregivers. Now I’m not saying that this necessarily precipitated the return of my lymphoma, but I had just gone through another challenging move and the death (breast cancer) of another beloved dog. I’ve realized I can move OR lose a beloved dog – just not both at the same time. Treatment was no picnic but between my second and third rounds, my PET scan showed complete remission! The next three rounds weren’t exactly a pleasure, but I was still one happy camper. That was exactly 13 years ago. Yes, I am enjoying this remission.

As with my first remission, I didn’t spend a moment worrying about if or when it would return. I’m aware that follicular lymphoma is so far treatable, not curable. We are buying time and the picture is so much rosier than it was when I was first diagnosed. I am so grateful for every healthy day and the extraordinary clinicians, researchers, pharmaceutical companies, and organizations like LRF that make it possible for survivors to have a bright future and for me to meet my grandchildren.

LRF’s advocacy, support, education, and research funding has made a huge difference and given me continued hope. I have been to several Educational Forums, workshops and Ask the Doctors. I was connected with a patient message board early on and was referred to my brilliant oncologist by LRF. I spent a delightful and informative afternoon with Ron and Shoshana Levy facilitated through an LRF contact. I have participated in Lymphoma Walks and the Lymphoma Support Network.

I am so grateful that the outlook for lymphoma survivors has improved so dramatically in the past twenty years. I thought I had exhausted all treatment options thirteen years ago, but thanks to LRF, I know if/when my disease returns, I will have options.