Monthly Archives: July 2009

Words from the big chair #6

Hello again all.

Sorry it takes me more time between blog posts. I find it harder and harder to sit down and organize my thoughts. Between treatments, all I want to do is forget about the next treatment. And writing down my experiencs is a way for me to relive each past treatment or stoke my anxiety about the next one. So, although I want to share my experiences with all of you – please be patient with me.

Treatment #7 went well. I was able to use my portacath for the first time. It still isn’t completely healed due to the stitches, but the nurse worked around it and it was a pleasure not having to get chemo through an IV in my arms.

I still felt nauseaous during the first parts of the process – all nerves. What was once kind of ‘new’ experience or even a little ‘exciting’ is now stressful for me. I know this is means-to-an-end…but just walking into the infusion center causes my stomach to drop. I think it has something to do with the illogical notion that the people who are caring for me are actually making me sicker. Can’t I just take a week of antibiotics and call it a day?

They shot me up with a lot of Benedryl and I slept through the entire infusion – which was the best way to deal with it. I basically slept away most of the weekend. I’m preparing myself that this is going to get harder as it goes along and I have to be mentally prepared to take it easy for the long weekends until I start to feel better after each treatment.

And this weekend was the worst so far – a lot more nausea than I’ve had before. Part of me thinks that I have begun slacking on my nutrition and diet. Two pieces of pizza for dinner on Sunday night was not supportive of having a healthy digestivie system – and I paid the price. My goal for this week is to fill the house with healthy fruits and vegetables and go back to eating plain, nutritious meals in the house.

In the meantime, I try to sleep as much as possible – its the easiest way to pass the time. I’m not much good if I’m feeling sick all day, so I try to nap it off. Its a good thing I was a champion sleeper before my treatments started. I feel like I’ve been preparing my whole life of napping for this very moment. This is my Tour de France of sleeping.

My next milestone is a PET scan in a couple of weeks, after my next treatment. This will tell me how the cancer cells are reacting to the ABVD. In a perfect situation, I could already be in remission and there’s no sign of cancer cells. Otherwise, the cancer could be on the run. Or we could have to adjust treatment if the cancer has stopped reacting so well. The PET scan will tell all.

My health is good overall. My hair is magically still hanging on my head and refuses to go away completely. I am focused on rest, relaxation and recovery for the next couple of months.

5 more treatments. Final chemo on October 1st. I count the days.


Self Consciousness and Strength

I’m reading the Lance Armstrong book “It’s Not About The Bike, My Journey Back To Life”. A good friend gave it to me for inspiration and I hesitated about opening it up. Most of the time I don’t want to be reminded about my condition. And I was afraid that reading this book would give me one more reminder of what’s going on.

After Chapter 1 I was so inspiring that I put on one of those popular yellow Livestrong bracelets. The book is that good.

Lance (and we’re close enough buddies that I can call him Lance…I did work with him 1 day in Austin for an insurance commercial, so we’re tight)…anyway…through his book, Lance has put into words a lot of feelings and experiences that are difficult to share and difficult to describe. I’m learning a lot about my condition through his experience. Especially, the similarities of the experience of having cancer, no matter what type it is.

For example, he mentions a moment when he decided he wasn’t going to be self-conscious about his condition. It happened early on in his treatment – I believe it was after he had to go to the sperm bank and his mom and two friends went with him for support. Imagine finding out you have testicular cancer on a Thursday and by Saturday afternoon you have to muster some kind of excitement so you can hedge your bets against the radiation making you sterile? For most cancer patients, they don’t have to imagine it – it’s a reality. And one that quickly strips you of your notions about what experiences you share with other people.

Through reading his story, I understand now that there is a difference between being self-conscious and being strong. And I think one can be mistaken for the other.

From almost immediately after my diagnosis, I decided not to be self-conscious about my condition. I didn’t intend to ‘share’ my experience with the world, it just sort of happened this way. I made a decided to not try to cover up the experience, but instead share it with people who are interested. I’m happy to answer any questions. I post photos to share the experience even more. The scars, the hair, the cancer – there’s no point in pretending its not here, so why be self-conscious about it?

But this is not a sign of being strong. It may be a sign of narcissism, but all of this ‘sharing’ doesn’t make the experience any easier. Just because I can write about my chemo doesn’t make the anxiety any less real. Answering the questions about what is going on with me doesn’t those answers any less bitter tasting in my mouth when I give them. My willingness to share – to not be self-conscious – is not an example of my strength.

Strength is giving yourself the shots. Taking the pills. Getting the chemo. Dealing with the phlebitis. Following the doctor’s orders. And questioning the doctors when you’re not sure of their answers. Strength is fighting the fight and not letting the cancer have control.

As my friend said – “The disease doesn’t define the person, the person defines the disease.” This friend has shown more strength in his experience with cancer then anyone else I know. And he didn’t have a blog to brag about that strength – he just did what he had to do.

The best – and most unexpected – by-product of my blog is that I am in touch with other Hodgkin’s patients around the country.

Early on, I drew a lot of inspiration from a girl I met in the hospital while I was there. She was 4 treatments ahead of me and she was able to shed light on a lot questions and concerns that I had. Now, I’m able to do the same thing for others. Through my lack of self-consciousness, I can share the nutritional advice I’ve been given or compare treatments with other people. Through this sharing of knowledge and experience, we are able to find more strength.

Reading Lance’s book has helped me better define my own experience with cancer and examine my own strengths and weaknesses. And it might be a cheesy yellow band of plastic, but because Lance Armstrong wasn’t self-consciousness, this Livestrong bracelet is now a symbol of the strength that all cancer patients share.

People are awesome

I feel good today.

Check that – I feel great today.

My usual chemo-zombie-sicky feeling cleared up by Sunday night (after a long Sunday afternoon nap). I woke up this morning with a desire for coffee – which is usually the first sign that my body is returning to normal.

Also, the problem with my portacath shouldn’t be a big deal. It should just be a surface infection that is supposed to clear up with the help of some antibiotics. The doctors are hoping that I can start getting chemo in the port by my next treatment. Nothing is for certain, but I’ll take a little good news.

Why else do I feel good today? I feel good because I spent most of last week feeling bad. Hitting the half way point of chemo left me feeling like there was a lot of fight behind me…and still a lot more fight left to come. It left me feeling exhausted and anxious. It left me feeling a bit sorry for myself. The rollercoaster that is my cancer treatment had hit a dip.

But mostly I feel good today because a lot of other people have taken the time to make me feel good. A friend at work asked about me – someone I didn’t even know was aware of my treatments. That was very nice of him.

I got a great postcard in the mail from friends in Spain. And an unexpected card signed by some friends and strangers from New York.

I got good news on my blog from a fellow Hodgkin’s patient that I’ve never met. I heard from my Hodgkin’s buddy that I met in the hospital when this all began. And another cancer survivor friend just keeps on keeping on – reminding me that this to will pass.

I feel good today because I have so many more reasons for feeling good than feeling bad.

And I want you all to know that when I have to take a deep breath and give myself a shot – I think of all of you. When I think of my next treatment and my stomach flips over – I’ll think of all those strangers in New York who are rooting for me. Port or no port – when the needles come, I’ll think of my fellow Hodgkin’s patients. I think of my family and friends and fellow cancer patients and strangers who have taken an interest.

I feel good today because its Monday and I’m getting better and people are awesome.

Thanks for being awesome.

Almost - but not quite - how I feel today.


Words from the big chair #5

Glass half full. Today was my 6th chemo treatment of 12. I was stoked.

But my excitement got tempered by a bit of an anxiety attack during the chemo. Apparently, I wasn’t the only one feeling a bit anxious today as the doctors and nurses had their hands full talking to other patients about their feelings. It was one big anxious infusion party.

Through this process, my emotions have evolved from limited clarity about life (“Don’t sweat the small stuff”) to aggression (“Let’s beat this thing”) and now to frustration (“5 more damn months of this crap. I’m going crazy.”)

Also, there was definite frustration today about my condition and treatment. My portacath, which was supposed to make things easier, has a minor infection and I couldn’t use it – so back to using an IV in my arm. The pre-meds they were giving me were slightly different than what I usually get — because my doctor never formally changed my prescriptions. He figured that the nurses would just ‘talk to one another’ to give me the right nausea meds and Benedryl. It all worked out in the end, but I had to get upset about the lack of communication…again.

Definitely frustrating and a little emotional.

Round 6 - I need the strength of this guy.

Round 6 - I need the strength of this guy.

So that’s what is going on with me – blah, blah, blah. Halfway through it and still having to fight every step of the way. Its not like I wasn’t told it was going to be this way.

But there is a silver lining around the edges of all this – I am enjoying my photography class. It motivates me to get out of the house and it is nice to have the time to practice thinking creatively. If I can’t work on set, I might as well pursue my own interests and try to build the portfolio.

I thought I’d share a bit of what I’ve been up to. I have one full set on FlickR:

And here’s one of the Santa Monica Pier to wet your whistle:

A metaphor for my life? Or just a pretty picture? You decide.

A metaphor for my life? Or just a pretty picture? You decide.

Words from the big chair #4

(I thought I posted this 2 weeks ago after my 5th chemo…but apparently I only saved a draft. So here is an old post that is now a new post.)

Even though this is my 5th chemo, I’m still only writing from the big chair for the 4th time. And what a week it was.

On Wednesday, I had my portocath put in my upper chest. It took quite some more time than they told it would, but the surgeons were just being cautious. My tumor is still restricting my Superior Vena Cava in my upper chest and the catheter goes right down this restricted vein, which needs a little TLC. After they got that figured out, there was some bleeding from the port site because my other veins are picking up the slack and are particularly full of blood. In the end, it was all under control and I finished up in a couple of hours.

My new buddy - Petey the Port

My new buddy - Petey the Port

It was my first time in surgery, tho. I told the nurse (my favorite nurse I’ve had during this whole process – she runs a tight ship) and her response was “Yeah, but its nice to know we are here.” True dat.

I also kept bugging them whether the port had any other functions – could I use it as a panic button? Is it in any way considered ‘bionic’? Can it help me jump over tall buildings in single bound. Alas, it is only a way to get the chemicals to my heart faster. *Yawn*

I have a small incision on my upper chest and the ‘port’ device sits in a little ‘sack’ stitched to the inside of my skin. Then the catheter runs through my vein and to my heart. This helps the drugs get into my blood flow faster (no more phlebitis in my arms!) and also helps for blood draws and takes the place of an IV. Every other cancer patient I talk to says it is a blessing to have a port put.

My 2nd happiest port day will be the day they take it out.

So, long story short – it feels like someone punched me in the upper left chest and the area is sore. But not so sore that I couldn’t go back to chemo today – hooray!

Today, I went into chemo with a different attitude than last time. Whatever happens to me over this weekend I know it is only temporary. And the war in my chest is being won by ABVD. So, although me, the chemo kid in Minnesotta, my friend Vanessa, producer Jon and everyone else I know who is going through this right now thinks it sucks – we all have to be strong together.

So chemo went well. The port worked just the way it was promised. The most uncomfortable thing was taking the tape off of my hairy chest – which sucks so bad that I might start another blog about it – Mr. and Mr. Follicle.

The nausea is starting to set in tonight. Looking forward to a long week of watching movies in my jammies and catching up on some PS3.

Nothing new to report except about a dozen super-human people installed and injected super-human technology into me for 2 days.

Me and my surgical team

Me and my surgical team