My story, from onset to oncology

One of the questions I get is "What were your symptoms?"  
Hopefully, this gives some backstory.


I had odd symptoms going back well into summer, but what ultimately brought me to the doctor was approximately 2 months of a generalized sickness.  It felt like the flu or a bad cold but without any respiratory (or GI) symptoms.  Shaking chills, sweating fevers, and body aches mostly in my shoulders and upper back.  I've had drenching night sweats periodically, but that goes back over 5 years.   They did increase in frequency at this point.   The fevers were only subjective, however.  The sicker I felt, the lower my temp was, something like 94*.  I thought our thermometer was broken, but Sarah always proved it reliable.


Finally, I went to the doctor in early November.
My physical exam was fairly normal.  No lymph nodes to speak of, nor other abnormalities.    So, he ordered a bunch of blood tests including blood cultures, electrolytes, CBC, TSH, cortisol, and antibody titers for an odd bacteria which had recently killed my dog.  My labs were mostly normal, but my white blood cell count was 15.2 (normal is 10.5 or less).  You can see what my white count has done since here.

Also, I had a non-specific liver test that was abnormal and a high protein.   Further tests for the protein didn't indicate anything abnormal.  All signs pointed to an infection, although my blood cultures were normal.  An ESR of almost 60, and CRP of almost 8 didn't help.  (This is how many lymphoma stories start, apparently)  So, the next step was looking for infections.  All the common "Fever of Unknown Origin" items were ruled out.  The doctors were baffled.  I was taking a lot of ibuprofen, which helped tremendously, so the idea of a rheumatological disease was being considered.   In the meantime, the doctors wanted to do a CT scan of my chest/abdomen/pelvis.  It was now mid-December.


My CT scan showed many large lymph nodes all over my chest.  The largest one was a 3 x 7 cm collection right near my heart.  As soon as the results were back, ideas of infection or rheumatology were easily dismissed.  My doctor called me with a preliminary diagnosis of Hodgkin's Lymphoma on December 18th, 2009.  He was scrambling to consult interventional radiology to see if they could biopsy the node, but it was ultimately decided that this would require surgery.


I had a V.A.T.S. biopsy on December 30, 2009.  This was an inpatient procedure requiring one of my lungs to be deflated while the surgeon grabbed pieces of the lymph node for the pathologist.  Upon finishing surgery, I had a chest tube.  Coming out of surgery, I (apparently) had a massive coughing/vomiting fit, which put a little extra air in the subcutaneous tissue, which later caused some odd sensations.   The chest tube can be seen here...

I dreaded having this taken out, but it wasn't so bad.  It was sort of weird having it, though.   I didn't sleep much at the hospital, but our room did have a great view.....

The picture doesn't do justice of the fact that I had a view of the Denver skyline with the mountains behind it.   It was even better at night, with the buildings lit up.   Luckily, Sarah brought some DVDs to watch, and we had some books.


The pathologist at the hospital couldn't be sure what he was seeing, but forwarded on my pathology specimen to the Mayo Clinic.  Pathology was specifically looking for Reed Sternberg cells. In the meantime, the surgeon was concerned that if Mayo couldn't definitively call the disease, he'd have to perform another operation to try for another lymph node.  In order to find the best possible node, he ordered a P.E.T. scan.  


The P.E.T. scan was an interesting experience.  You are injected with a radiolabeled sugar, given IV push.   If there are metabolically active cells (such as cancer cells), they'll take up the sugar, and the radiolabel will concentrate there on the picture.  So, I was taken to a nice quite room to sit and wait for about an hour or 90 minutes.  Nice wood floors, leather recliner, flat screen with ESPN, and a warm blanket, but I tried to sleep.   The scan itself is much like a CT, and took about 30 minutes.


On Monday, January 11th, the surgeon called me to definitively diagnose Stage 3 Hodgkin's lymphoma.  Mayo was willing to call the pathology specimen without equivocation.  He suggested I come by to look at the P.E.T. scan, which was then used for staging, along with the previous CT scan.  By the time I got to his office, he suggested I cancel my afternoon.  I had an appointment in oncology.