Word has been getting around that I’m heading back for another round of tests. I figured it would be a good time for an update.
Firstly, I haven’t posted here in a few months because…well…I thought this was a chapter in my life that was behind me. Especially after I laid my good friend to rest in February, I wanted to concentrate on moving forward. I wasn’t trying to forget my experiences or the memory of my dear friend…but I wanted to apply some of the life lessons I learned over the past year instead of dwelling on the past.
After I returned to work in March, it was easier to try to file away my experience fighting Hodgkin’s Disease and get my life back on track. However, it seems that Mr. Hodgkin’s – or some relation of his – isn’t done with me yet.
Around October 2009, after 4 rounds of chemo, I had a PET scan that showed I was in remission. And there was much rejoicing. In December, a follow up scan showed a small amount of PET activity. This was shortly after I finished my radiation treatment and the doctors assured me that having vague PET activity was not unusual and we would check again in another 3 months. Scans in March showed a slight uptick in PET activity. I was told that this PET activity was located pretty deep in my chest and it wouldn’t be easy to get a biopsy of the area to see what was going on in there. I was comfortable to continue a ‘wait-and-see’ approach.
The beginning of May I got hit hard by some kind of virus. It was very similar to how I felt in October of 2008 when I first started having my Hodgkin’s symptoms. A lot of people were sick around this time and I got some antibiotics which seemed to clear things up. However, I was left with a nagging cough that persisted for weeks. I was also feeling some headaches and dizziness that was similar to my SVC symptoms. Long story short, I had an angio CT and a PET scan in the beginning of June.
The CT scan showed that there was narrowing of my vena cava where it entered the right atrium of my heart. This is occurring in an area between my stent and my heart (my stent is working just fine). The PET scan showed increased activity in this same area.
To help you visualize what is going on inside me, here is helpful diagram of the heart. The PET activity and narrowing of my veins is occurring at about the exact place where the diagram identifies the superior vena cava (from upper body).
This is a very sensitive area to get a biopsy because my PET activity is located near my heart, bronchial tubes and important blood vessels. On June 15, they tried a needle biopsy which was less invasive – but the tissue samples only showed scar tissue and were not usable.
This coming week I have an open biopsy planned to be performed by a thoracic surgeon. They will put me under general anesthesia and go into my chest to make sure they get a few useful samples. This is a more exact method of getting the tissue samples but it is also more involved and complicated than the needle biopsy – which is why the doctors tried to avoid performing a surgical biopsy. However, with the added complexity of the surgery also comes the reassurance that – if anything were to happen, such as bleeding or a collapsed lung – the surgical team could take care of things more efficiently. I will also spend anywhere from 24 – 48 hours in the hospital after the surgery for observation.
You may be asking yourself – what could be going on in Steve’s chest? Why didn’t the chemo and radiation take care of everything? Upon waking up from the surgery, what will Steve want to eat?
Considering the size of my tumor (16cm to start, now currently 11cm of scar tissue), it is not surprising that some of the little bastard cancer cells avoided the treatment and may have ‘transformed’ into a different kind of lymphoma. Or there might be some other kind of tissue growing near the tumor. Or it might be something completely different. The doctors aren’t taking guesses as to what it could be – that’s what the biopsy is for. All we know is that there is active PET activity in my chest, something is restricting the veins into my heart and we have to figure out what it is and how to treat it.
Also – I want a turkey sandwich and soup.
I’ll do my best to keep you updated on my diagnosis.
I’ve got great doctors and an amazing wife. I’ve also got a fresh outlook on life which has prepared me to take things in stride.
Talk to you soon.