Monthly Archives: August 2009

Words from the big chair #6

Ok, so this isn’t really number 6 for me. Its actually #9. Which means I have 3 more chemo sessions left. Which makes me feel good.

In the past couple of weeks, I’ve been taking steps to get my mind back in touch with my body. For awhile there, I was so caught up in looking at the future that I stopped taking care of the present. I had to re-focus myself that ‘getting better’ and healing is my job these days and everything else will work itself out in time.

All of this was probably exacerbated by my PET scan I had this week.

The results are very good – not perfect, but I knew I’d have more challenges down the road.

My upper chest, throat, abdomen and surrounding organs are all cancer free. The tumor has shrunk down from 16cm to probably something about the size of an orange. So the treatments are working and things are getting better.

Unfortunately, the PET scan works by detecting high metabolic rates in the body – the sugar cells congregate around the cancer cells (which use the most energy) and that is how the doctors can detect the cancer cells. From the blockages in my vascular structure (veins), I have some ‘blood pooling’. This pooling can give signs that there may be cancer cells, or it may just be an area of high metabolic rate.

I think I’m getting the medical terminology right in all this. But the bottom line is – it is difficult to tell if I’m in full remission with blood pooling or if I still have some cancer cells floating around in the tumor. More tests and studies will be needed.

My next step is getting me prepared for radiation in November. The radiation might be a little tricky since my tumor is so big and is located close to the heart and lungs and trachea…but I’m not the first and I won’t be the last to get this procedure. We’re working hard to make sure I get the best radiologists possible.

Also, the blocking of my SVC (Superior Vena Cava) will have to be addressed – probably by a stent (a metal sheath that will hold my veins open). Hopefully, this can be done the same time they pull out my portacath.

What does all of this add up to? Getting there, one day at a time. Its nice to see all my remaining chemo sessions on one piece of paper. And its great to start focusing on the rest of the procedures that will get me back on my feet and out of this apartment for awhile.

Every day I put a little more fear behind me and a little more hope in front.

Thanks for following along.

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Mind games

August 22 will mark the 4 month anniversary of my trip into the emergency room. It’s been an interesting few months.

Like most cancer patients, I came out of the gate swinging for the fences. I listened to the doctors and nurses and all of their advice. They told me this would be a boxing match that got harder as the treatments went along. I talked with social workers who told me there were support groups when the going got tough. Everyone was impressed with my fortitude and strength and it looked like I was going to breeze right through this treatment.

A couple of days of nausea after the chemo. Back on my feet on Monday. Trying to make life as normal as possible during the in-between weeks. That was my first few months.

But about half way through, something clicked – my life isn’t the same. This isn’t business-as-usual. And the more this realization crept into my head, the harder it has become to pretend like everything is status quo.

My last couple of weeks has been more of a mental battle then a physical one. Coming to grips with another 3 months of my life on hold. Trying to fill up my days. Unable to find inspiration in my work or projects. Everything seemed to grind to a halt.

Sure, I have the ‘curable cancer’. And logic tells me that in a couple of months my life will return to normal – waiting for the next job, looking forward to days off, life not broken up into ‘good’ weekends and ‘bad’ weekends, no more Magic Monday Mornings. But whatever my life is like a few months from now doesn’t really impact the here-and-now. And its the now that I’ve been dealing with.

So that’s where I’ve been. That’s why I haven’t been posting on my blog. I think you can tell by my last couple of blog posts that this is the direction I was headed – spending my time counting the days ahead instead of enjoying the day in front of me.

This isn’t an unusual place to be. That’s why the doctors and nurses and social workers all give you their advice when you start the process. But who wants to listen to them tell you how hard its going to be? I’d rather think of this as an extended vacation where I can hone up on my Playstation skills…but even that gets old, fast.

I’m on the same track as so many cancer patients before me. I’m sharing my experiences with those currently going through treatment and those who have beaten cancer. Its all about getting over the hump to reach those better days ahead. This too will pass.

As this goes on, I thought it was important to update everyone as the latest with my condition. Let’s break it down:

I’ve got an important PET scan on Monday. This will show me how much of the cancer has been beaten. Best news is that I could already be in remission – cancer free. Or else, the treatments are working and there’s still some abnormal cells to beat down. Or, worst case, the treatment has stopped working as well as it should and we need to make some adjustments. But all signs point towards the treatments working in full effect – and that’s what I’m counting on.

I recently had an echocardiogram on my heart which showed that everything is normal with my ticker. The chemo drugs can sometimes do damage to heart and lungs, but it seems like I’m clear of that.

The PET scan is an important milestone. It will tell the doctors how effective my treatment has been and where to go from here. I can start to consult about my radiation treatments in November. And, also important, I need to deal with the SVC Syndrome that I’m still experiencing – the blocked veins in my chest. I still get dizzy when I bend over or exert myself too much and I know I still have a 3-5 centimeter blockage above my heart. After the PET scan, I can start to deal with that, as well.

So, yeah. There’s still a lot on my plate when it comes to treatment. But all of this will take care of itself. I’ve got a great team of doctors and nurses working on me. I’m looking forward to good results from the PET scan. And, in the meantime, I’m re-focusing that this is a time meant for healing – my goal is getting better and everything else is secondary.

Still, tho, the Playstation does come in handy…

My best to all. Look forward to seeing you soon.

Magic Monday Mornings

I don’t write as much on this blog anymore. I think its because my treatment – and my days – are starting to feel a bit routine.

I weather the chemo pretty well. I haven’t had the same complications as some other people I know. No trips to the hospital. No new developments at the doctor. Everything seems to be moving along the way it should be. And I don’t want to upset the balance. I’m not sure what I’m doing that makes it feel like its working…but whatever it is, I don’t want to change it either.

I slipped on the nutrition front the past couple of days and I think I could feel it. Nausea and feeling terrible at the end of the week seems abnormal to me. And I want to blame it on the poor diet I had on Friday. So, this weekend, I tried to get back on the horse. I have to stay focused on what goes in my body – fruits, veggies, water.

For some reason, the sickness I feel after chemo seems to clear up on Monday morning. I still feel tired and have occassional bouts of nausea during the week – but the difference I feel between Sunday night and Monday morning is amazing. I also think the steroids are still having an effect on me by Monday because I seem to wake up and I’m ready to go go go.

Whatever the reason, I refer to them as Magic Monday Mornings because the world seems to right itself and I can start to get back to a regular life for another week and half.

One change this week is that I have to take my Neupogen shots for an extra 3 days. And I can feel it. It must build up in my system because the bone pain is almost constant at some points in the day. I feel achy in my legs, my back, my shoulders. But my white blood counts were so low last treatment that they almost didn’t give me chemo – so I’ve got to do what I can to keep those WBC up.

Other than the medical stuff, I’ve been trying extra hard to keep my life busy. Some days I wake up and feel like I’ve got too much on my plate. Some days I wake up and I feel like I don’t have enough going on and I’m wasting my time. But one thing is constant – I count every day.

I count every Neupogen shot.

I count every treatment.

I count up the days…the weeks…the months until I’m supposed to be done with my chemo.

I count up how many more disability checks I’m going to collect until I can get back to work.

Maybe all of this counting is actually bad for me. My friend’s advice is to live more in the present – make the most of the day I have in front of me and not worry so much about what is coming later. I try. But it is difficult when every day is broken up into a series of pills, shots, protein drinks and more pills.

It almost feels like I’m living two lives – the life of a patient and my ‘healthy’ life. The sick days are spent as a patient – which is fine with me. I’m willing to take the time I need to get better.

But after that Magic Monday Morning…when I almost feel like myself again…I want to push push push to get my healthy life back again.

And it will come in time.

In 5 more treatments.

1 month of radiation.

27 more Neupogen shots.

5 more months….