Monthly Archives: May 2009

Words from the big chair #2

Dr. Klein and the nurse had bad news about my white blood cell count. But they delivered it in a terrific manner.

Dr. Klein and the nurse told me my white blood cell count was los again. But they delivered the news iin a terrific manner.

Hello again from the chemo throne.

I am still getting the chemo through an IV in my arm. They can’t consider a port in my chest until after they take a look at the blood clots again. And they can’t take a look at the blood clots until after my 4th treatment. So, its all about my arm veins for another couple of weeks.

The nurse who gave me the IV was an Army vet and he gave me a smooth stick under pressure – virtually painless. Painless needle sticks have become very important to me. Nurses trained to do triage while getting attacked by the Taliban = good IV.

But some bad news – I have to go back on the Neupogen. My white blood cell counts are low again. Which sucks.  I’m not sure if this is a Neupogen roller coaster ride that I will be on the whole time. I’m hoping that some tweaks in my nutritional plan will help my WBC stay up. Eating less sugar and more natural stuff will be a small price to pay compared to the bone pain I get from the Neupogen.

In other news, the Benedryl is kicking in and I’m going into my loopy place. It hits me pretty hard and pretty quick. Takes the edge off of everything.

I’ve got 3 ‘pushes’ then the drip.

As always, the “Red Devil” (Adryomyacin) goes in first. The nurse tells me that this one is harsh. Can cause serious nausea. But it is a necessary chemical for me to get – very effective and sort of a ‘standard issue’ chemo drug. This is the one that is also hardest on the veins and is probably causing the phlebitis in my arms (blood clots). Little bastard. Pushpushpush.

Vinblastine next. Pushpushpush.

Then Bleomyacin, which is rough on my lungs. Looks like I missed my window to take up pipe smoking. Pushpushpush.

And finally the Dacarbazine, which is my least favorite because it causes me so much pain in my arm and hand. Drip…drip…drip…

Did you know that some chemo chemicals are purple? Or aqua? Me neither. They turn your pee different colors. I’m used to mine being orange. Turquoise would be interesting.

Did you know they had free granola bars while you’re getting treatment? Mmmm…

One of these is full of nuts. The other is a granola bar.

What do Miley Cyrus and a granola bar have in common? I have no idea. I found the photo this way.

I am both amazed and depressed that this clinic is so ‘normal’. People come in, get their chemo, read magazines, socialize, nurses come and go and it feels a lot like a clubhouse to me. Part of the special treatment you get for being a member of the Cancer Club, I guess.

I find it a little depressing because this is a necessary part of life for so many people. Cancer treatment goes from something which is shocking and life changing to something along the lines of routine.

Beep beep beep. My IV keeps stopping.

Drip drip drip. The nurse fixes it.

Almost done. And a celebrity sighting – much to my mom and aunt’s glee – Bob Newhart. He’s older. His wife is here for chemo.

Quote of the day, which makes coming in for chemo worth it. My mom just said:

"He looks just like himself."

"He looks just like himself."

Classic.

Home again. Shots for myself tomorrow.  Rest. Sleep.

I’ll probably dream tonight that I am married to Susanne Pleschette, own a bed and breakfast and 3 guys named Daryl 2 guys named Daryl and 1 guy named Larry live next door.

Thanks for tuning in.

13 year old boy – update 2

Daniel Hauser and his mother, Colleen,  have returned to Minnesotta and will not be charged by the police.

Now, hopefully, he can get treatment for his Hodgkin’s Disease.

Here is (in my opinion) a well written article by ABC news with different viewpoints about the situation. It mentions important new information – the mother’s sister died while in chemotherapy and also their regular oncologist uses Integrated Medicine in his practice (which is using alternative treatments to help suppress side effects or promote destruction of the cancer). I think it is a fair and balanced article.

Doctor of Boy Who Fled Chemo Says Hausers Are “Good People”

And here is an editorial from the Toronto Star newspaper with the writer’s personal story of a friend who underwent chemotherapy for lymphoma. His point is that the chemotherapy is no walk in the park and has its own, dangerous side effects to deal with. So Colleen Hauser has motivation to want to protect her child from undergoing difficult chemotherapy, especially after Daniel had “violent effects” after his first round:

We Shouldn’t Be Judging the Chemo Kid

I surprised by the response I received after posting the original article. I thought some of you would click through to read the article out of curiosity, but I did not consider that it would elicit a response – from mothers, from advocates of alternative treatments, from former cancer patients. So I took a second look at why I posted the article and what I had to say about it.

My response was based on the fact that Hodgkin’s Disease is a treatable condition and I could not see any reason for the mother to deny chemo treatment for her son. If anything, I feel lucky to have such a treatable condition and to live in a place where I can get cutting-edge and effective treatment.

From the Toronto Star article: “Hodgkin’s lymphoma has a 90 per cent cure rate with chemotherapy, and a 95 per cent chance of killing a person without it.”

Some articles about the Hausers mention the “Nemenhah Band” – a religious organization that promotes American Indian practices and is centered around a ‘do no harm’ position on medical treatment. Apparently, the mother found this group on the Internet and used them as justification for denying her son chemotherapy.

I invite you to go to the Nemenhah Band website and see for yourself what they represent. I can’t make heads or tails of it – it seems like a self-fulfilling group of people who first and foremost want you to support the group – “If you are willing to publicly declare that Natural Healing comprises part of your Spiritual Orientation, that you will First Do No Harm, and that you will work to further the work of perfecting and unifying the Band and the fulfilling of its mission, promising your support for its services and offerings, you are invited to become part of our Permanent Population through the ancient Principle of Spiritual Adoption.”

Their Principal Medicine Chief is named Phillip ‘Cloudpiler’ Landis. From Associated Press, Landis’ background is summarized “Phillip ‘Cloudpiler’ Landis was raised Mormon in western Washington and didn’t think much about what he considers his American Indian heritage until he went to prison.”What better place to have to sit and reflect upon what motivates you,” he said.” He claims that his cancer was cured by only natural and holistic treatments.

All of this made me pretty upset. Not at alternative treatments. But at using half-assed, internet-based ‘religious’ organizations to deny a child proper healthcare. So much for “First Do No Harm”.

A mother scared. A son too young and uneducated to understand what is going on. If this were a made-for-TV movie, I guess I’d have tears in my eyes by the end (Haley Joel Osmet would play the boy, Lynda Hamilton would play the mother).

Usually I am not fascinated by fleeting news stories. But I am always fascinated by what motivates people – especially what motivates a mother to deny her son the same kind of treatment that I am currently going through.

So, mothers hug your children and consider to what lengths you would go to protect them.

Everyone – take a moment to consider what you would do when the big cards are laid out on the table – cancer, aids, euthanasia, abortion – for you or for those closest to you.

We spend a lot of time arguing about what you think other people should do. But it mostly matters what you would choose to do for yourself or for your immediate loved ones.

My friend Flickr

Me and my pet IV. I think I'll name him 'Drippy'.

Me and my pet IV. I think I'll name him 'Drippy'.

Between myself, Jen and a couple of photographer friends of mine, I decided to try to document my cancer treatment in photos. I’m a photographer – it’s just my nature.

A warning – I am trying to document this “warts and all”. My intent isn’t to be shocking or exploitative. Merely to communicate my progress and experiences.

Some of the photos are lighthearted. Some of them may be a little difficult for certain people. Especially if you don’t like needles. Or seeing me with tubes stuck in my arms.

But I leave it up to you whether you want to see any photos. They are arranged as thumbnails so you can pick and choose individual photos instead of seeing the whole set at once.

You have been warned.

On the right side of this page I have added a Flickr link to my photoset.

Also, here is the link: http://www.flickr.com/photos/sdickter/sets/72157618699964697

My best to all. #3 countdown has begun.

9.8 Granulocytes…ah ah ah…

Dr. Klein

Dr. Klein

We went to see Dr. Klein today. My blood tests are better than normal. I am a white blood cell count making factory right now. Thanks Nueopogen! All that pain was worth it, I guess.

For those of you keeping score at home, here are my counts (the numbers on the right are the ‘normal’ range so you can see I’m above normal on some counts):

WBC          12.4        4.1 – 10.9

LYM          1.8          0.6 – 4.1

MID          0.9          0.0 – 1.8

GRAN       9.8          2.0 – 7.8

Today I feel like I played a game of beach volleyball insted of a game of tackle football. I had so much pain in my hips and lower back that I was up at 4 am. And if you’re ever up at 4 am on a Thursday morning and you want to know what’s on TV, the answer is: nothing. Don’t bother. Read a book. You can always buy a Shamwow later. Go back to bed.

The other thing I had to deal with today was telling Dr. Klein about how the UCLA Cancer Center completely screwed up everything in one week. On Monday, the nurse didn’t have me on her schedule for my shot and we had a 45 minute wait. Then she told me they might not even have the Neupogen because no one had ordered my medicine and they had to scramble to even get my prescription filled – even though it was Monday and the doctor had ordered it last Thursday. Not to mention the 2+ hours Jen had to spend on the phone to get the insurance approval and get the pharmacy to ship out the medicine after they had already done all their shipments for the day.

I have a favorite saying: If I did my job like you do your job, I wouldn’t have a job.

Sure it’s a bit snotty, but if I don’t do my job correctly then the work of over a hundred people and tens of thousands of dollars is gone forever. If a nurse (or nurses and receptionists) don’t do their job at the UCLA Cancer Center, then sick people get worse.

It’s one thing to have a bump in the road, an isolated problem. It is another thing to run into the brick wall of having no less than 3 people completely screw up and stress out a cancer patient. If the UCLA Cancer Center was a Jiffy Lube, I would not bring my car to them.

So, I am very close to switching my care to the UCLA Lymphoma Center in Westwood. Not because I don’t like my doctor (and isn’t he adorable in that little doctor outfit and glasses?) but because I was misdiagnosed for 6 months and I don’t trust any medical personnel right now.

Oh yeah, and my hair is starting to fall out. Sigh.

But I’m healthy and getting better every day.

At least I don’t have to take the bone-shaking Neupogen shots this week. Maybe I should be more like Dr. Klein and learn to relax a little bit?

Dr. Klein the cowboy

Dr. Klein says "Yee-ha!"

We have a hot tub in our building

hot tub

Hells yeah.

When you feel like a 200 year old man with achy bones, it’s time to get in the hot tub.

Jen has lived here for 13 years. She has never been in the hot tub. I have lived here for 6+ years. I have never been in the hot tub.

Are we dumb? Probably. But take a look at where it is – in the middle of the building. How odd is that? Hard to relax when half the building can see you. Or so I thought.

Even so – some of you may think we are stupid or silly for not ever using our hot tub. Well to that I say – there’s no lifeguard on duty?

I don’t know why we’ve never used it.

But now desperate times call for desperate measures.

Plans for summer: Rehab in the pool on the roof. Loosen up in the hot tub. Ride the bike in the exercise room to keep the blood pumping. Guitar Hero to keep the mind sharp and improve my terrible sense of rhythm.

This is the summer of my recovery.

I wonder how many of you are going from feeling sorry for me to being jealous of me…?

Chemo boy update

For those of you following this story, the mother has kidnapped the boy and not shown up in court.

http://news.yahoo.com/s/ap/20090519/ap_on_re_us/us_forced_chemo

The boy is in pain around the port in his chest and the tumor has grown back to its original size. After 1 round of chemo, the tumor had shrunk. But the mother and father decided to take him off of treatments and use only holistic treatments.

I’m all for holistic treatments – I am seeking some myself. But only as additonal support for the chemotherapy. With a success rate of 90%, I believe it would be foolish to turn down chemotherapy and radiation. Yes – the side effects and long term effects scare the s*it out me. But it is a calculated risk. A decision that I am forced to make – I am given a situation and the only control I have is how I choose to treat it.

If I had a different form of cancer – one with much lower success rate – then the scale would be tipped and holistic treatments would probably seem like more likely options. Given a 20% chance of a cure based on chemo/radiation and/or holistic treatments, it seems like either one is an option. But having a 90% success rate – well, that certainly changes things.

Again, I am lucky. Lucky that I have a condition with such a high success rate.

Daniel Hauser is also lucky – but only if his mother finds clarity somehow.

30 year olds shouldn’t play football

Me leaving two-hand touch football game. Circa 2006.

2006 - Steve Dickter's two-hand touch football career ends.

I ache.

The Neupogen shots go straight to the bones. Only a few minutes after getting my shot, my shoulder starts to ache. And my back. And my hips. I’m still up and about but I feel like I want to lay on a bed-sized heating pad.

However, I am not as sore as after the last time I played football.

About 3 years ago (4?), a bunch of us got the bright idea to play 2 hand touch football on a Sunday afternoon. I remember watching my dad play flag football when I was a little boy. A couple weekends a year, he’d go out with a bunch of other not-in-top-shape accountants and play organized games. Being so young, I didn’t realize at the time that he was freakin’ crazy.

A couple of the other guys had played football in high school. One guy wore cleats. That should have been a bad sign. Another guy brought oranges. Yeah, like eating an orange was going to save me.

I hurt so bad after that Sunday playing football that I couldn’t get out of bed. I pulled my thighs, calves, ribs, arms, head and everything else. I couldn’t lift my leg to get into my car. I couldn’t walk. I felt terrible about it until I talked to another friend – a friend who is in better shape than me – and he told me he couldn’t get his leg to go from gas pedal to brake. Then I didn’t feel as bad about myself…emotionally, not physically.

So I feel slightly better today than I did that day, which is a relief.

And all of this reminds me that I have to start making plans for when I don’t ache anymore. I don’t think I’ll be up for football for quite some time.

So, Thanksgiving Paintball anyone?

Me. You. Celebrating the holidays.

Me. You. Celebrating the holidays.