Monthly Archives: June 2010

Choose my own adventure

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You enter the hospital. Your wife is by your side. You are wearing a comfortable grey shirt and dark grey track pants with a red stripe down the side. You go to the 3rd floor and check-in at the desk. You are escorted to a room filled with hospital beds and equipment. Curtains separate each of the beds. You change into a hospital gown with booties on your feet and a cap for your hair. It is chilly but the nurse gives you a warm blanket to put over you. With just a small prick, the nurse puts an IV in your arm. Your anxiety builds as you wait for another 30 minutes. Your wife keeps you preoccupied with jokes. Eventually, a nurse comes in to wheel you to surgery. You kiss your wife goodbye and breathe deep.

The surgical room is brightly lit and there are monitors mounted to the ceiling. The nurses help you hop from the bed onto the surgical table. It gets even colder in the room. The nurse folds down your gown and props a blue sheet over your head, obscuring your view. Someone rubs cold alcohol onto your chest. The surgeon comes in and says hello as he begins preparing for your procedure.

The ceiling begins to spin. You begin slurring your words as you tell the surgeon to take his time and get it right. Slowly everything fades to black…

You have 3 options:

1. The surgeon puts a scope into your chest and is able to take sample tissue with minimal surgery. You leave the hospital that night under your own power with only a small cut at the base of your throat.

2. The surgeon makes 3 small incisions on your side and is able to get a tissue sample by triangulating into the affected area. You leave the hospital that night under your own power with some soreness in your side.

3. The surgeon makes a 6 inch incision in your side, cuts through a rib, reduces blood flow through some of your collateral veins and is able to get multiple tissue samples. You spend 5-6 days in the hospital recovering from the surgery. Brazil wins the World Cup and you miss 4th of July.

These are my options. Wednesday I am getting a surgical biopsy to see what the PET activity is in my chest. The surgeon has to work around my 11cm lump of scar tissue in order to get tissue samples.

Jen is going to have a lot on her plate the day of the surgery. We will post an update here as soon as we can to let all of you know how it goes. I’m sure I’ll be fine, it is just a question of how much recovery time I will need. Then we wait for the biopsy results.

Although all of your love and support is greatly appreciated – we would also appreciate your patience. Please don’t call or text unless it is necessary. Sometimes it all gets a bit overwhelming. We will reach out when we can.

Talk to you soon.

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The Good Kind

This is a post for anyone reading this who has dealt with Hodgkin’s Disease. This post is just for you and me.

Screw the people who tell us we have the ‘good kind’ of cancer.

I’ve read this before on other Hodgkin’s blogs. And I’m guilty of saying it myself as a way to get people to stop pitying me.

Yesterday I went in for some tests of my heart and my lungs. One of the techs asked me what I was getting tested for, and when I told him I had Hodgkin’s he said: “At least that’s the easy one.”

Yeah. I wanted to punch him in the face. I told him that I had already been through 6 months of chemo, a month of radiation and stent surgery and now I was back getting another biopsy. He seemed to shrink back a little bit. But I let him off the hook by saying, “You mean Hodgkin’s is the most curable.” And he perked right back up.

Well – screw him. And screw anybody who talks about something that they don’t know a damn thing about. Just offer your support and move on. Don’t try to diagnose me to make yourself feel better.

It’s this attitude that I’m taking with me to the hospital tomorrow.

‘nuf said.

This update is in poor taste – you are warned.

Quick update: I’m having another biopsy in the next week. Might be as soon as Friday. More likely it will be next week.

The surgeon is going to try less invasive techniques to get a tissue sample – starting with a scope in my chest.

If that doesn’t work, he will proceed to more invasive techniques. I’m not going to have my chest cracked open, but they might have to go around a rib or two. At best, I walk out the same day. At worst, 5 or so days in the hospital.

All this to get a clean sample to find out what the PET activity is in my chest. This would be a straightforward procedure if it wasn’t for the 11cm lump of scar tissue left over from my Hodgkin’s chemo and radiation treatment.

I’m trying to stay calm. I’m juggling a lot of communication with friends and family.

Personally, I figure the real worrying will come if I have to go back into cancer treatment.

This could be lymphoma.

Or maybe this is just an infection.

Or maybe I shouldn’t have taken that mining job on LV-426 (damn you Burke!).

You look how I feel.

I’ll be in touch.

Round 2…?

Ding!

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).

A helpful diagram of the heart.

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.

My thoracic surgeon showing his excitement upon extraction of useful tissue.

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.