ABVD didn't work
So I've had a bit a horrible year to say the least. Graduated college with and bachelors of science in May 2016 (at 47- finally!) got a seasonal job doing a federal geological/ soil infiltration study that paid well, thinking my life was finally on the upswing. Then my fiancee of 10 years breaks up with me (she lost her mind and former sweet personality to oxycodone addiction from a surgery) I had to move out of the house (her parents bought her) and move in with my family in PA (from Buffalo). Reeling, I began the long process of living out of boxes, trying to find work, when a series of ailments struck me.
At first I thought I picked up a weird peronchia (nailbed infection) from the gym I was attending in November 2016, but then a month later developed cellulitis on my lip that did not clear up for weeks. I tried to explain to the Patient First doctors (my PA insurance did not kick in till March) that a year prior in March of 2016 I developed and abscess under my left armpit and it was drained but when I went back to have an ultrasound to see where the residual sac was to be removed they could not find anything. I kept asking if maybe I suffer from an auto immune disease because 3 infections requiring powerful antibiotics to beat them in one year? I mean I'm not a doctor but do have a scientific background and I knew there had to be a connection. Everyone, including people in my family thought I was just stressed from my traumatic year.
In late May/ early June of 2017 (can't remember really) on a hot day I was wearing a tanktop and noticed my left armpit (same place I had a abscess over a year ago) was really swollen. I made an appointment with my PCP and he took a look at it and referred me to a Einstein Network for an ultrasound and male mammogram. I had 3 male mammograms that day (I have a whole new level of respect for what women have to endure with those!). The doctors there said they were going to refer me to a surgeon at Einstein. She turned out to completely change my mind on the medical profession. See my whole life I've never really been sick, exercised, never smoked, ate relatively well, and going through all these tests were really starting to make me feel like it was a complete insurance money grab. I was like surely this is another abscess just drain it already and figure out what auto-immune disease I have? Turns out this surgeon saved my life I think.
When I went to visit her Dr Schermer thought I might be right about the abscess. She saw the scar where one was drained the year before but told me the ultrasound didn't show much and ordered a CT Scan. Later on I found out, right then in there (when she saw the CT Scan) she knew it was Hodgkins but did a fine needle biopsy to be sure. Unfortunately (and again she called it) she knew it would be non-diagnostic because the lymph nodes were so swollen she only got fatty tissue and no lymph node tissue. So in one sense I was relieved that it proved non-cancerous but she was determined to get a real diagnosis. She scheduled me for surgery to remove a lymph node for testing (something she was completely against at first because she said lymph node removal is the last resort). I have never been under in my life so I was terrified.
I told her in recovery not to sugar coat anything and she can call and give it to me raw over the phone either way. I got a call a few days later- Hodgkins Lymphoma but assured me she thinks its in an early localized stage and highly treatable! I went through all the normal emotions people do when I was in shocked, I cried, wondered how this could have happened? Dr Schermer then recommended me to a oncologist/hematologist at Einstein.
The night before my oncology appointment my family had left for the shore and I was home watching a movie with my mother who has early onset Alzheimers. I began feeling chills and feverish at the same time and kept thinking is this a symptom of Hodgkins? I went upstairs to get a sweatshirt (it was really hot out so I was a bit freaked out) and noticed my underarm incision was bleeding and even more swollen. 9 days post surgery and it was severly infected (and till this day- 42 days later has not fully healed). My mother was frantic and my aunt and uncle came over in the morning (I had called my surgeon already but did not get a response) to take me to the oncology appointment. I got there with a 104 temperature- they called my surgeon and said she needed to see me right after my appointment to address the wound. My oncologist Dr Tester told me I have NLPHL (Nodular Lymphocyte Predominant Hodgkins Lymphoma) and he believed it was early- stage 2A, since I had no B symptoms. By then I also had developed swollen lymph nodes in my left neck area. He scheduled me for a Pet Scan and 2D Echo Doppler (test my heart health) for staging/diagnosis 8/31/17.
Turns out they had to get pushed back. My infection was so bad I had to go to my surgeons office every day for weeks so she could pack it (keeping the wound open and draining) and change the dressing. Underarm dressings are the worst. I was so freaked out I had this open wound under my arm. It was hard to sleep, then I developed an allergic reaction to the tape used and bleeding blisters formed all around the wound. I was taking 2500mg's of 2 antibiotics daily for a month. It seemed **** Hodgkins was the least of my problems!
Finally after Labor Day I stopped getting dressing changes and said **** it: This has to close because I can't deal with it. My Pet Scan/ 2D Echo were rescheduled for 9/14. This entire time I had been googling about my Hodgkins, reading peer reviewed literature, but unfortunately my results came through on my patient portal before the doctor made an appointment follow up. All I saw was 'Advanced Hodgkins' on the report and I knew it would be bad. I knew it would be bad because also since the infection started clearing up I developed a bunch of 'B' symptoms: Drenching night sweats every night, fevers/chills not associated with the infection, I lost 10 pounds and my appetite, worse thing is now I have this dry persistant cough I presume because nodes are pressing on my lungs. I wrote down a ton of questions to ask including will I be given R-ABVD for treatment? I met with Dr Tester on 9/22 for staging/ treatment plan. He was surprised but gave it to me straight, initially though to be stage 2A but now is stage 4B. I looked at the Pet Scan and it showed not only the large masses of infected lymph nodes in my left armpit/neck region but the Dr pointed out how there were osseous lesions all down my spinal column and my right hipbone and my spleen is slightly enlarged FDG Avid, and indication of infected lymph node above and below the diaphragm. He said he was shocked but it looks systemic.
Now I'm a tough person. I've been through a ton of **** my whole life including being homeless for 6 months when I was 24. I can get used to any bit of bad news including cancer but this whole thing from the onset would never let me just get comfortable. No sooner than I started using my dry sense of humor on my condition to psyche myself up for upcoming treatment did it just get a whole lot more serious!
I can't lie, I'm scared as **** now. I go back an forth btw I'm going to kick this things **** to- **** what if I can't?. I start 6-8 months of R-ABVD on 10/6. Only bit of good news is Dr Tester says physically I'm really fit for my age, my heart is healthy, and I have a positive mental attitude about it- which he says goes a long way into beating this and being cured. He says really the only thing bad you have is stage 4B and you're male on the unfavorable list. I get a port this week I think (thankfully it's not put me under surgery again!) but I'm worried about treatment. I mean I know I need it (and thankful Rituxan is included as a monoclonal antibody!) but man the cure sounds worse than the disease! I keep thinking I'm going to come out of this feeble, with a bad heart and lungs, and will it work? I already feel fatigued from the advanced Hodgkins (NLPHL)
Anyhow I went to the chemo ward on 9/22 as well and met some of the nurses. I said hi to a patient and said "I'm about ready to join your club!" He said it's only a fun club to join if you get to leave eventually.
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