Meet Genevieve Haupt : Living with Hodgkin’s Lymphoma – Part 1

Genevieve Haupt, researcher in higher education at the University of Cape Town participated at our annual Lace-Up for Cancer event last year ( 2015). She celebrated 1 year of remission from Hodgkin’s Lymphoma.This is her story:

My life before diagnosis

I was in the second year of my PhD, which I was doing part-time and working full-time as a Researcher at the Human Sciences Research Council. I found myself in a very unhappy long-term relationship (5 years at the time), but as trying to make it work. I felt very alone in the relationship and at one point, I asked myself “if I should ever get diagnosed with cancer, would he care?” I would get my answer sooner than I expected. To this day, it still baffles me that this very specific thought crossed my mind. Looking back it might have been some kind of foresight or God preparing me for what was to come.

My diagnosis

I had suffered from an itchy-sore throat for the most of 2013. But looking back on the years preceding my diagnosis, I remember displaying other signs of the disease, such as night-sweats and fatigue. The fatigue I attributed to my job and studies as I had begun my PhD in 2011.

During 2013, I visited my GP several times with an itchy-sore throat and he assured me that it was a throat infection. My remedy for this was immune boosters and antiseptic throat spray to prevent it from becoming a cold or flu. Which seemed to keep it at bay.

But at one point, I think roundabout June 2013, I noticed a mass at the base of my neck, which I assumed was a tension knot. In July 2013 I attended one of my Doctoral Weeks at Rhodes University and while in attending a seminar I began to feel very tired and a bit shaky. One of my colleagues noticed. I also mentioned the knot to her and she responded by saying the location of the knot seemed odd for a tension knot. I decided to see a GP in Grahamstown and he said that it could be a swollen lymph node as a result of a throat infection. He gave me some antibiotics, but said I should go to my GP when I return to Cape Town if the swelling hasn’t subsided.

By the time I returned to Cape Town (a week later) the lump had still not subsided. I then went back to my GP, who sent me for blood tests and an x-ray and gave me stronger antibiotics. Both the blood tests and x-rays came back clear…so at this point I felt completely neurotic. I then began to ignore it but I kept feeling ill, i.e., I suffered from headaches, fatigue and the sore throat persisted, which resulted in me taking a lot of sick days.  At the end of August 2013, my then supervisor, asked me what was wrong with my health. At this point I mentioned the knot at the base of my neck to her and she responded by suggested I go for a second opinion and referred me to her GP in Town. I wasn’t driving at the time, but my colleague offered to take me. A few of my other colleagues used this as means of getting out of the office (and supporting me of course) by tagging along.

It was a female GP which was different, but she was so attentive and warm. She conducted a short exam and indicated that she wasn’t happy with the way it felt so recommended I have a sonar. While having the sonar, the examiner said I should lay still while she calls someone else, this is when I first realised that something must be wrong.

Two days later I went back to the GP, who then referred me for a biopsy. I met with the surgeon a few days later and had an incisional biopsy the following week, Wednesday, 11th September 2013. When the surgeon saw me to sign my release forms on the evening of the biopsy, I asked him what he thought it was and he said its either Lymphoma or Tuberculosis because both diseases have a similar cell make-up but he will call me by Friday to confirm the diagnosis.

My Friday the 13th

So on Friday the 13th of September at 6pm the surgeon called, it is Non-Hodgkin’s Lymphoma!!! He wanted to discuss it further, so we scheduled an appointment for that coming Monday. I was at home, in the apartment I shared with my ex, but had to call him because he wasn’t aware that I was crying after receiving the diagnosis. My personality is such, that I wanted to make everyone else feel at ease. So the first thing I did was send a message to all my loved ones who had been waiting to hear from me. My message read, “I have Non-Hodgkin’s lymphoma, Grade 1 (I didn’t know what this meant at the time but it was all the surgeon could tell me, because I still needed to do the staging of the disease), it is a blood cancer, and it is in the early stages and there is a good prognosis.”

One big issue with having two days before meeting with the surgeon was that I  am a researcher, so I spent most of the weekend researching all I could about Non-Hodgkin’s Lymphoma.

Which was a big waste of time, because when I met with the surgeon the Monday, he made a correction and confirmed that it wasn’t Non-Hodgkin’s, but rather Hodgkin’s Lymphoma. More specifically it was Nodular Sclerosis Hodgkin’s Lymphoma, which more commonly affects women (), and younger adults, with the mean age of 28 (, another criteria I match, Yay for me) but most importantly was that most patients are cured with current treatment and you are classified as cured after being in remission for 2 years….almost there

He then set-up an appointment with one of only two Haematologists (an Oncologist who specialises in Blood Cancers) in Cape Town. Dr Schmidt’s office was situated in Panorama so it would be best if he was my Oncologist, as I moved back to my parent’s home, because my mom already took the role of my primary caregiver. 

My first Oncology visit

It was a three week wait before I would see my oncologist and the above diagram somewhat explains what my first oncology visit was like. Yes! It was overwhelming to say the least. I had recorded the appointment on my cell phone and took notes, like a good student. The first thing that needed to be done was the staging of the disease, which entailed, blood tests, CT scans, and a bone-marrow aspiration. When I first learnt that I would need a bone-marrow aspiration, it took my breath away, as I realised for the second time, that this is real, that I have CANCER.

Staging took some time, so before my next appointment with my Oncologist, I asked my mom if we could arrange a prayer meeting. In my teenage and young adults years I had drifted from God and my faith. But I still had the Christian values embedded in my being, which I should thank my maternal grand-parents for. The funny thing about Prayer Meeting and what I was accustomed to, is that these would most likely take place when someone has passed away. So I thought, I am alive and need prayers, so why not! This was the start of my journey back to my faith.

Treatment Plan

Once staging was completed I met with my Oncologist again. The outcome was that I had stage 2B (favourable). This meant that the disease was only found in the upper part of my body, above the diaphragm. I would do 2 rounds of chemotherapy, followed by a PET scan. The outcome of the scan would determine the next steps, either more chemotherapy and/or radiation.

Chemotherapy consisted of 2 cycles i.e. one cycle is equal to two sittings, one every two weeks, so I would have a total of 4 sittings over 2 cycles. The chemotherapy which I received was called ABVD or (A)driamycin(B)leomycin(V)inblastine and (D)acarbazine. Because chemotherapy is administered intravenously my Oncologist recommend that I have a chemo-port inserted into my chest to assist with the administration of the drugs and to prevent the chemotherapy burning the veins in my arms, which could lead to terrible scarring of the skin as well. The port was inserted into my chest in October 2013 with a two week recovery period. This operation was very painful. I commenced chemotherapy around mid-November 2013 and according to my calculations I would complete both cycles of chemotherapy just before Christmas. However, things don’t always go according to plan.

When I met with my Oncologist for my third or second last chemo sitting, he indicated that I would only be able to have my PET scan in the first week of January 2014, due to unavailable equipment, so instead of stopping chemotherapy after two cycles, he suggests that I have another 2 cycles of chemotherapy!!! So I was signed up for another two cycles (4 sittings) of chemotherapy, with my last sitting scheduled for the 7th February 2014.

On the 8th January 2014, I had my first PET scan which came back ALL CLEAR!!! But my Oncologist wanted to make sure the disease never returned so I needed to complete my chemotherapy and followed by radiation.  Because I was in the early stages and showed a favourable PET scan, I would only be required to have the lowest Gray of radiation, over a 10 day period.

Once I completed my chemotherapy I had a three week break. I then had to go for Radiation preparation which included mapping and sculpting a mask for my face. For the mapping I had to have another CT scan to establish the exact location to which the radiation needed to be administered. The mask was sculptured to fit my head and neck for the same reason as the mapping. The mask also ensured that my movement was restricted while the radiation was administered.

Radiation was administered every day for 10 days with the weekends serving as a break. Each sitting of radiation lasted between 10-15 minutes. When I began radiation and had to lay still for 20 minutes (the first and last sitting of radiation where slightly longer) I again was faced with the fact that I actually had CANCER! It reignited a lot of feelings and emotions.

Side effects

My research around the disease and treatment meant that I had some of idea of possible side effects. These included, hair loss, loss of appetite, fatigue, mouth sores, blackening of the finger and toe-nails, nausea, and other stomach ailments, bone pain (from Neupogen injections), lack of concentration to name a few. I must admit that I didn’t suffer from severe stomach ailments, which could be largely due to my mom, who monitored my diet. The more frequent side effects I experienced was the hair loss, fatigue, lack of concentration, blackening of my finger-and-toenails and bone pain. I also suffered from a terribly sore throat while completing radiation.

The one which bothered me the most was fatigue. I was extremely tired all of the time. Luckily my employer was very understanding, and allowed to be off from work for the duration of my treatment.