Monthly Archives: August 2010

The Mission is Remission

Yo all.

Let’s start with big news first, shall we?

I found out on Friday that I’m in remission. I don’t have details – I meet with the doctor on Thursday to go over my scan. But this does mean that I’m right on course and we can move ahead with the stem cell treatment sooner rather than later. Let’s take a moment to say “HELL YEAH!” shall we?

I’ve got my 3rd chemo next week. Then my team and I will get ready for the stem cell process – first harvesting, then I go in hospital for BEAM chemo and finally reintroduce my stem cells. I’m hoping for mid-end of October to get all of this done.

The hardest part is yet to come. The stem cell process is going to be quite difficult – from the isolation for 3 weeks to the physical toll it will take on my body. Also, I will be immuno-deficient for some time afterward, which will put me at risk for catching disease and infection. Sounds like good times.

But one step at a time. I’ve been basking in the glow of my good news. It has been hugely motivating to know that all the pain I’ve been going through is worth it. A big shout out goes to my oncologist and her team for staying on top of all my side-effects – big and small – and keeping up with my blood work and general well being.

I also started grad school yesterday, which is also a big kick in the ass. The school is hugely supportive and I feel cool and comfortable beginning this process, even with such a daunting medical schedule in front of me. I’ll be Skyped in to classes that I will miss and my professors have put into place an excellent support system for me. Taking a class this semester is the best decision I could have made for myself – both in the short term and the long term.

I don’t know what else to say. What can I put in this blog to adequately describe how good I’m feeling these days? In remission. Life moving forward. I’ve got some fatigue and bone pain, but it is all manageable. So I’m enjoying the good days because there are bad days ahead.

I’m happy to share this good news with you. And I’m at a loss how to end such an awesome blog post.

So I give you Chewbacca on a giant squirrel fighting Nazi’s (courtesy of Deviantart’s gamefan84):

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More of the same

I look in the mirror and I don’t recognize myself anymore. No hair on my head or my face. Deep black pockets around my eyes. Tubes hanging from my arms. Scars on my side. What happened?

It is frightening sometimes. Looking at the rows of pill bottles. Getting myself psyched for my blood thinner shot every day. Even the cheeriness and smiles of the nurses and doctors have a macabre feeling about them. As if there is a big secret that no one is talking about.

And then on other days I rise to the challenge. I stare at myself in the mirror and think I look pretty good. The little pimples don’t bother me (see Pizza Face blog post from a year ago). I see a little glimmer in my eyes somewhere inside the dark holes. The fact that I can even get up and stare myself down gives me a little thrill.

Lately, I haven’t been sleeping well. A lot of insomnia. As if I spend my days distracting myself and at night my mind opens up to all the possibilities. Its not like I lay awake at night thinking dark thoughts…I just think all my thoughts that I put out of my head all day.

This is another reason why it is sometimes difficult for me to write updates. I don’t want to be full of complaining – and trust me, if I listed all of my complaints in every post you would stop reading. But I also can’t pretend that I’m cheery and full of jokes, as I was for a few months last year.

Mostly, it is just taking advantage of the good days and not lingering on the bad ones. And, unfortunately, I don’t usually know which kind of day it is going to be until I’m already in the middle of it. I’ve had to postpone getting together with friends and turn down dinner requests. And even on my good days, I don’t always want to sit over a cup of coffee and ‘catch up’ about my situation. Sometimes I just want to go out and live a little.

It is confusing. I’m trying to keep focused on the big picture, the main mission, rather than dwell on each little difficulty, each shot, each pill. Keeping in mind the ultimate goal is a good way for me to push through the pain, irritation and suckiness of cancer treatment. Chew it up in small bites which will add up over time. And when every meal becomes an endurance test to overcome my sore throat and take in a meal, it does help to take small bites.

I’ve gotten a lot of great pick-me-ups over the past couple of weeks. Thanks for all the cards, gift certificates (which go to excellent use), dinner options, treats, books and music. Everyone is being very kind. I especially appreciate the things which help make both Jen and mine lives a little easier. I say a thank you for each smoothie that someone paid for.

Speaking of giving…Jen is working on an amazing project to get DVD players and movies available for every oncology hospital room at UCLA Santa Monica and Ronald Reagan in Westwood. I’ll let her do the talking…she expresses the loneliness and frustration of being stuck in a hospital room in a more eloquent way than I can put into words. Please, visit her blog and consider making some kind of donation. It will brighten up the lives of a lot of lonely, frustrated and sick people.

Donations through Giftberry here

Instructions on donating directly to hospital and Jen’s blog post here

I’ve also been touched that other cancer patients have written me some comments on how my blog is full of information and they appreciate me sharing my experience. I find my greatest comfort in talking to other patients…I hope some people can find some comfort in my words.

So…yes, last week sucked. My red blood counts are low, so I’m tired. My throat hurts. I’m waiting for my white blood cells count to come up so I can shake some of the pain, swelling and discomfort that I’m feeling. I have a couple weeks of until my next treatment. But I’m anxious about my upcoming PET scan – hopefully, the end of this week. I’m in a holding pattern.

Instead of sitting around watching the clock, I’m trying to take advantage of every good day. See friends. Enjoy fresh air. Walk hand in hand with my beautiful wife.

I’m less than a week out of the hospital and today was a good day. I’m looking forward to more of the same.

My biggest fan

Jen and I don’t have kids of our own. But we have the next best thing – our neighbor’s kids. Eliana is 2 and Ezekial is 3. We see them all the time. We yell to them off the balcony (or they yell to us “Tio! Tia!”). Paola and Fidel (the parents) are dear friends of ours. Fidel was working in the ER when I went in last year for my chest x-ray and diagnosis (but I don’t hold it against him).

The Double E’s are adorable and fun and sweet and silly and loving and everything you could want in your kids.

Ezekial is my biggest fan. He comes over to play Wii bowling and always wants to show me his new Spider Man shirt.

The other day, I showed him my new haircut. He touched my bald head and told me he liked it. I was a little afraid of scaring him with my shiny cabeza, but he didn’t seem to mind.

Sunday morning Paola called and told us that Ezekial wanted to show us something off the balcony. “Tio! Tio! Look look!” we heard from outside.

Looking down from above, we could see little Ezekial, patting his newly shaven head. “Look Tio! I got a haircut just like you!!”

Silly little guy. I’m completely flattered. Not only by the love of my little 3 year old buddy, but also by his parents who let him buzz his hair down to look like me.

I’m totally touched and honored.

I’ll do you proud, little buddy.

And then my friend Billy made this – the next logical step:

Dr. Stevel

And the support continues…thanks Brett. Now go buy a hat, your head will be cold in London…

Bald Bavo

A surprise visit from a freshly shaven Cee Dub today. Colin – may your white pencil always stay sharp, my friend.

(That sounded dirty)

Local 600 solidarity.

Where the sideburn ends

This chemo is not like your other chemo. This chemo doesn’t f**k around. This chemo will suck you in, spit you out and put you through the ringer. Even when you feel like you’ve got this chemo all figured out…its gonna throw something else at you in the morning.

No one said this to me. The most I got was: “Yeah. Its kind of like ABVD from last year. You’re experienced. You should be fine.”

Hmph. This time I didn’t even get a pamphlet.

But you know what? Today, I am fine. Sure, I had to shave all the hair off my head. But it was a small price to pay for also getting to eat a big, juicy burger and spend a sunshiny day with my beloved wife. Chemo #1 may have knocked me down, but I got back up again.

The blood clot has cleared up. The rash is gone (it may come back after each chemo. We shall see.) The mouth sores were the worst. Almost a full week without being able to talk or eat anything solid. The folks at Jamba Juice know Jen by sight. I’ve rinsed my mouth out with all kinds of artificial saliva, baking powder/salt/hydrogen peroxide concoctions, ‘magic mouthwash’, Biotene, mycostatin and plenty of other stuff. I took a sip from protein smoothie that burned my mouth so bad it brought tears to my eyes. It sucked. We talked for some time with a couple of doctors on steps we can take to prevent, or at least cut back, on the mouth sores next time. Fingers crossed about that.

For those of you interested – the chemo attacks the fast growing cells of my mouth. In addition, when my white blood cell count plummets, my body is unable to fight off the fungus that naturally grows in your moth. So I had a mixture of thrush (fungal infection), cold sores, ulcers, yeast and probably some other nasty stuff. The best you can do is have excellent oral hygiene, suck on lozenges, take in lots of glutamine and rinse rinse rinse your mouth out and always keep it moist. Next time during chemo, I’ll also be sucking on a lot of ice chips.

Last week was funny. Once I left the hospital, I got a rash. Once the rash started to clear up, I got mouth sores. Somewhere in the middle, I needed to go to the ER to get platelets. Then, when the mouth sores went away, all my hair started falling out.

Let’s talk for a minute about the hair thing. I avoided it last year. I thought I could avoid it this year if I buzzed my hair short. No such luck. It really does come out in clumps and clumps. And not just your head – from different parts of your body (use your imagination). I wasted $20 yesterday getting my hair buzzed down short only to spend an hour in the bathroom today buzzing it all the way down. If this doesn’t work (and I don’t think it will), I’ll take a straight razor to my melon.

So let’s look on the bright side, shall we?

I’ve got a week until I have to go back in the hospital. My counts are up. My appetite is good. I’m tired but able to go out for the whole day. My first meal after my WBC went back up was a delicious grilled piece of tuna from Malibu Seafood House. And I sipped the sweetest Coke I’ve ever had in my entire life.

Hells yeah, I can eat again.

I’m going to take a graduate class in the fall and the school is being extraordinarily supportive. I’m looking forward to studying mass media criticism – its been a dream of mine since college. I’ll attend as many classes as I can. And I’ll work hard to keep up and contribute. I know I’ve got a rough few months ahead of me, but its nice to have a goal and a possible new direction in life.

My doctors are knowledgeable, supportive and caring. My friends and family have all been wonderfully patient and sensitive. I met with the nutritionist at the Simms/Mann Center and she helped me develop a new program of supplements an nutrition to keep myself as strong as possible.  My Playstation skills are coming along nicely.

For additional reading, here is a Vanity Fair article by columnist Christopher Hitchens in which he describes his current battle with cancer. It is well written, heartfelt and accurately describes the strange world of being a cancer patient: Topic of Cancer by Christopher Hitchens.

I posted some photos of my experiences from the past couple of weeks on my FlickR page: Me and Mr. Hodgkins, 2010

For now, here are the standard photos of me with a mohawk and me with no hair. Enjoy.

My hair was getting patchy. And falling out in clumps.

The obligatory "Cancer patient cuts his hair into a mohawk" photo.

Stephen meets Bald Stephen for the first time. There is no spoon.

Clare & Pablove

So many people offering me their support. So many people asking me what they can do for me.

Here you go: Our good friend Clare works for Pablove (Curing Childhood Cancer With Love). She is self-sacrificing, kind, funny, hip and cute as all get out. Inspired by Pablove and wanting to ‘do something’, this year Clare is running her first marathon. Also, she is doing it in my honor.

Hopefully, she won’t forever associate my name with leg cramping, dehydration and pain. And I look forward to being there in March to give her cups of water and meet her on the finish line with a big hug.

You can help by pledging money to Pablove via Clare’s LA Marathon website:

Clare Gillmore: Raising Money For the Pablove Foundation

Clare and I will see you on the finish line…

Thanks and much love.