Tag Archives: radiation

Unplugged…with diagnosis

Here’s a quick message to let you know that…

1. I am away on vacation for a week.

2. When I return, I will begin more treatments for my Hodgkin’s Disease. The ABVD and radiation last year didn’t quite get every cell and we have to go to Round 2.

Round 2 consists of a couple rounds of hi-dose chemo, which will take a couple of months. Then they harvest stem cells from my blood. Next, they mega-dose me with chemo to kill all the active Hodgkin’s cells, which also results in destroying my immune system. Finally, they inject me with my own stem cells to rebuild my immune system.

I begin treatment on July 21. A great reason for Jen and I to get away for a week.

I know you must have a million questions. I have a million questions myself.

But for now I am turning off, tuning out and unplugging from all this.

Talk to you soon.

Can you feel it? Hmmm.

Radiation treatment is graded on a pass/fail

Where does the time go?

This summer, every day felt like an eternity. Now, I can’t believe it is already December.

A month after my last radiation treatment and my chest is still red and I lost most of my hair in the area where I was zapped. I look like I’m wearing a V-neck sweater made of hair. I’ll spare you the photos.

I was warned that it would take awhile for my energy level to return to normal and I still find myself sleepy and fatigued some days. Its true that the radiation takes some time to really affect your body so I was more tired after the treatments were done than during the time I was getting treatment. That’s one of the reasons they gave me another month of R&R to catch up. Looks like the doctors do know what they are talking about after all.

Tomorrow – exactly 1 month to the day of my last radiation treatment – I’m going in for my first follow-up PET scan and CT scan. This is to double check that I’m in remission. It is also an important step in treating my SVC syndrome.

The ironic thing in this whole process is that I feel almost exactly the same today as I did a year ago – my head is a little swollen, I get dizzy easy and I sometimes feel pressure in my chest. This is because, even though I am cancer-free, I am still carrying around a large tumor in my chest which is restricting my blood flow. A little gift from Mr. Hodgkins that I’ll probably have for the rest of my life.

Dealing with this condition should be the final step in my treatment. I’m looking forward to getting it all done before the New Year.

So, its the end of a very long year and a good time for reflection. What am I supposed to have learned from this experience?

Well, Huey Lewis said it best – “The power of love is a curious thing.” I think the most important lesson I’ve learned is the depth and breadth of love and support that people are capable of. Not just those close to me, but friends of friends, strangers and fellow cancer patients. It blows my mind when I think of how many people reached out to offer kind words, advice, and support in so many ways.

For Jen and I, this experience has made our world smaller. It has brought us closer to many people and also put us in touch with many, many more. When I look back on this experience, I don’t remember the details of the nausea or the chemo or the radiation – but I remember the emails and the cards and the phone calls. That is the feeling I’ll always carry with me.

For me, spending so much time being a patient has given me more questions than answers. How can I make my time on Earth more valuable? What are my priorities? How can I show my love and appreciation for the people in my life? What makes one day more worthwhile than another? Why are so many things that taste so good so bad for you (I’m talking to you, Girl Scout cookies…)

These are some of the things I’ll be thinking about when I’m laying in the big machine tomorrow getting my innards mapped.

And, not to leave you hanging, here are all the lyrics to that Huey Lewis song that I can’t get out of my head: Power of Love

You’re welcome.

A month and half later…

After my last chemo on October 1st, my doctors gave me a month of rest. I decided that part of this rest period also involved me putting the blog away for awhile. Taking a step back…pretending to not be a full time patient for a bit.

I went home to Philadelphia for a couple of weeks. Caught up with friends and family. It was wonderful and refreshing and great to see everyone. I thoroughly enjoyed the autumn weather – the changing leaves, the fall ‘snap’ in the air in the morning. My Grandmother’s ravioli and meatballs. The Wawa’s and the cheesesteaks and watching the Phillies in the World Series. The homemade pecan pie – my favorite food in the entire world. The ‘I’m So Glad This Isn’t Los Angeles And I Don’t Have To Figure Out How To Keep Myself Busy All Day’ feeling.

I also went to Pittsburgh for a few days to see a really good friend of mine who is going through some difficult times. This friend has always been a leader in our lives – the kind of person that brings people together, motivates all of us to make snowboarding trips happen and is always on top of the newest art show or best bar in town. Even though we talk all the time, I still didn’t know what to expect when I saw him (and he didn’t know what to expect when he saw me).

Instead of it being a week of sadness or frustration at our situations, it was a week of celebration and looking ahead. We made tracks around Pittsburgh – saw great exhibits and ate good food (I still have mixed dreams/nightmares about the Primanti Brother’s Sandwich) and we talked a lot about the future. What it holds for us, what we can and cannot control and what changes we’re going to make when we stop being cancer patients and instead become cancer survivors. My friend is – in one word – inspirational.

Yes, those are french fries inside the sandwich. Crazy Yinzers.

Yes, those are french fries inside the sandwich. Crazy Yinzers.

The month of October was a good break from the intensity of the chemotherapy and it was a nice way to say goodbye to The Longest Summer of My Life. But I couldn’t stay hidden away in Pennsylvania forever.

I started radiation on November 2nd. It’s weird.

Just like chemo, the routineness of the whole process is somewhat unnerving. The radiation therapists must take about 30-50 people/day on each machine – and they have 4 machines in UCLA. That’s a lot of people getting a lot of radiation in just one hospital. It boggles the mind.

In the beginning of October they ran a ‘simulation’ on me to get me ready for radiation treatment. They created a very specific ‘radiation field’ for my chest – zapping the tumor and as little of the surrounding area as possible. I’m getting a low dose of radiation (according to the doctor) and they don’t expect any long term side effects. But still, it’s generally not good to be getting intensive radiation treatment on your body. Hell, we’re not even supposed to sleep too close to our alarm clocks or put cheap plastic in the microwave…I walk to the hospital every day at 10:10 am. Breeze through reception and straight back to the radiation waiting room, full of magazines and puzzles and a fish tank. They run a tight ship in the basement of UCLA and they make a real effort to take each patient on time – so it really becomes routine after only a couple of days.

Did I mention the tatoos and lasers? During my simulation, they put 4 tiny tatoos on me – one on each arm and two on my chest. There are lasers placed around the room and in the machine which allows them to line me up the same way under the machine each time.  I’m hoping I can turn the two tiny dots on my chest into a tatoo of a battleship or a soaring American Eagle one day.

Bluto

With enough radiation and bit of work, one day I could look like Bluto.

I lay perfectly still and the technicians ominously leave the room. The machine zaps me once from the bottom and once from the top. The whole process takes about 10 minutes. And off I go.

If you want to see a photo of what the radiation treatment looks like, follow the links. I’m not posting photos here for everybody in case some of you find it disturbing to see a photo of me lying on a table with my shirt off:

http://www.flickr.com/photos/sdickter/4110336230/

http://www.flickr.com/photos/sdickter/4109571627

The treatments have made me tired and given me a wicked bad sore throat. The radiation dries out my throat and esophagus, making it difficult to swallow and eat. Lozenges help and I now chew my food the recommended minimum of 20 times which makes it easier to swallow. Once again, mom was right.

So, that’s where I’ve been the past few weeks. And how are you?

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.