The Waiting Game Part 1

Two weeks ago today, the leader of my medical team at the hospital told me that my lymph node biopsy showed a positive result for Hodgkin’s Lymphoma.  For the two weeks prior to that, I was on a roller coaster of blood-work, biopsies and other tests that provided a great deal contradictory information.

Basically, I contacted a virus.  The virus was similar to one several people in my social circle have recently had: flu-like symptoms (inconsistent fever and chills, night sweats, fatigue) and swelling of the lymph nodes in the face, similar to the mumps.  Viruses can be quite tricky and most are impossible to diagnose unless they’re common, major viruses.  During the process of trying to pinpoint a diagnosis, my medical team tried out a lot of different treatments and tests and, as a result, they stumbled upon the fact that I also have cancer.

Daily blood tests provided very little information other than indicating elevated stress levels and low electrolyte levels.  I had been so sick before entering the hospital that I had had a lot of trouble eating.  My stomach felt off and just felt terrible in general.  I think there was actually a test done specifically to see if I had lymphoma cells in my system.  As far as I know, the results of this test were inconclusive, which is quite common.

In order to rule out a bacterial infection, I was given intravenous antibiotics, to which I had an awful allergic reaction.  I had a red, spotty rash that covered my whole body (except for my armpits and the bottoms of my feet).  Personally, this was a bit of a nightmare because I was pretty scary to look at and, after the second dose of the antibiotics on my second day in the hospital, the rash started to burn and itch. I had to use steroid-based creams on my whole body and was basically doped up with antihistamines for a few days after.  They took biopsies of my skin to analyze the rash. The results were non-specific.

Of all the tests that my medical team conducted while I was in the hospital the only results that were useful were my second CT scan.  My first CT scan was only performed on my face.  Due to the virus, the lymph nodes in my face were so swollen that it was difficult for me to speak, particularly on the right side.  The doctors were concerned that it could be an infected abscess and so they wanted a scan of my face.  On my second day in the hospital, I was given a second CT scan of my whole upper body in order to determine whether the lymph nodes in my lungs, and other areas that are not immediately visible, were also inflamed.

They were.

After those results were analyzed, my medical team told me that they were 90% certain that I had lymphoma.  Subsequent to that a power struggle seems to have developed between several different specialty teams regarding performing a lymph node biopsy.  Some wanted to take samples, some wanted a full excision (taking out a whole node) and I spent 5 more days in the hospital waiting around for all the doctors to figure their shit out.

Meanwhile, the swelling in my lymph nodes (the obvious ones anyway) decreased significantly, because I was recovering from the virus.  This complicated the biopsy issue, because the surgical team wanted to excise one of the nodes in my groin which had been prominently swollen.  A few days after my examination by the surgeon, however, those nodes drained and returned to their normal size.

All of the doctors started murmuring that maybe it wasn’t lymphoma.

They did the biopsy on my 7th day in the hospital.  They took samples using an ultrasound machine from one of the nodes in my left armpit.  After the procedure was over, I was discharged from the hospital.

Several days later, I had a follow-up, outpatient appointment to go over some of my test results.  My biopsy was inconclusive.  I was told to come back several days later to review some of my other test results.  With very little fanfare or sympathy, the leader of my internal medical team informed me that, after further testing, my lymph node biopsy was positive for Hodgkin’s Lymphoma.

Up until that point, I felt like I had been doing a lot of waiting, but it’s nothing compared to what I’m dealing with now.  I had always believed that the cancer diagnosis process was simple: have some scans, ultrasounds and MRIs, find a tumor or mass, then start treatment.  Turns out, it’s a lot more complicated than that and I’ll get in to it later this week.

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