Tag Archives: Neupogen

A vacation from my brain

I keep saying that I consider myself lucky for a variety of reasons. My lack of side-effects is definitely one aspect of this process that I am very grateful for. I kept my hair (although I didn’t really care about that). My nausea is manageable. The fatigue is getting worse, but it is also under control. I don’t have mouth sores or much pain. The Neupogen shots suck…but again, bareable.

Oh yeah, and I have a curable cancer and I’m in remission. And that’s been pretty good news, too.

As I continue through the treatment process, one part of me that I realize has been suffering some pretty major side effects is my brain. Or my mind? I don’t really want to get into figuring out the difference. Let’s just say – the chemo has affected my ‘thinking bits’.

Its called ‘chemo brain’ and I finally looked it up on the Interwebs.

Difficulty focusing? Check.

Difficulty multi-tasking? Check.

Periods of fogginess? Check.

Depression and anxiety? Check.

Feeling that I’m being hunted by the Care Bears? Not chemo related, just something left over from my childhood.

Freaks.

Freaks.

Between my mounting fatigue, my wandering brain, occasional bone pain and all around having cancer – I’ve been trying to cut myself a break.

The meditation classes are teaching me to live in the moment – not worry about the past (“Boy, did this summer suck”) or worry about the future (“How many more chemo sessions do I have?”). But focus on what’s happening right now. Which, if you pay attention to the present, it usually isn’t that bad and really you should stop your complaining because your co-workers are tired of hearing about it anyway.

My goal has always been to come out of this better than I came into it. Stronger. Better. Healthier.

I’ve already felt the effects of my heart opening up more. For friends and family. The kindness of strangers. A deeper appreciation of how fragile life can be. And I can’t even describe what my heart feels for the woman who has held my hand through all of this.

But one thing I’m only starting to realize is that my mind might be stronger for going through this process. If only because I’ve had to explore its weaknesses.

The pain I feel in my body has been manageable. But the weaknesses I’ve felt in my mind are less fathomable. After all, its my mind that keeps walking me through the door to the doctor’s office. Its my mind that wants to punish me when I’m too tired to blog or write or take photos. Its my mind that goes from foggy to lucid to muddled all in one afternoon…but always manages to find its way back again.

I’m looking forward to having my mind back. I think we make a good team. And I’m looking forward to putting it to good use soon.

Now that I’ve gotten the call that I’m in remission and I’m starting to focus on the next steps in my treatment, I see there’s plenty of time for work and problem solving and creativity coming soon.

For now, there’s a lot of Facebook Scrabble to play, movies to watch and sunsets to appreciate. And I’m okay with that. I’ll cut my mind some slack.

Because soon, its back to business.

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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….

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

Words from the big chair #3

Sorry I haven’t been around lately. I had important work to accomplish helping my fellow Marines in Call of Duty 5 Just one more game until I get the supressor. Just…one….more…game…

The shit

The shit

Me in the shit.

Me in the shit.

So: How you doin? How am I doin?

First – you.

You are awesome. You call to let me know you’re thinking of me. You check in on Facebook. You think that photos of Grover stolen via Google Images makes me funny. You know that what I’m going through sucks but I’ll get better. You also give me really valuable advice that I can now pass on to other people. And you still, even though I asked you not to, give me the occasional awesome gift.

Thanks.

Today, if you asked me how its going, I’d have to say “Not fun.”

Going from feeling fine yesterday to feeling shi**y today is not fun. It is opposite of fun. What is the opposite of fun? Is it going to a clinic every other week full of nice, but very busy people, who poison you and make you go from feeling good to feeling bad. Like voluntarily getting the flu. That doesn’t sound life fun to me.

What wasn’t fun about today was getting poked with the IV needle twice to find a vein. And finding out I have to go back on Neupogen for low WBC counts. And throwing up half way through treatment. And sleeping in a coma-like state for the rest of the day.

Onward and upward.

I thought I’d clarify exactly what my restrictions and schedule is going to be. This is subject to change as I feel better/worse after each chemo but it seems to me that people aren’t sure if I’m 100% on my feet or trapped in my house. Am I John Travolta from Saturday Night Fever or the Boy in the Bubble?

How you doin?

How you doin?

Hey, how you doin?

Hey, how you doin?

I have chemo every other Thurdsay. I feel crappy the weekend and couple of days after that. First I feel tired, nauseous and weird from the chemo and then I feel sore and achy from the Neupogen shots. This has lasted from Thursday to Thursday. I’m around during these days, but limited.

After the Neupogen wears off and the chemo fatigue clears, I feel pretty good for the next week. At this point, my WBC starts dropping so I have to make sure I don’t get sick. I’ve been to the movies. I’ll meet up with 1 or 2 people at a time. Avoid places like bars, bowling alleys and Venice Beach.

I also plan on taking photography classes from June-July. However, I helped out on a set on Tuesday and it really wore me out. So I have to do everything in my own time.

I know people who are raising 3 kids while going through. One girl went through Sheriff’s Acadamy. I’m not ready to put my life on hiatus – just put a lot of stuff on hold for awhile. My goal is to come out of this a better person than I was before it started – physically, skills, mentally.

For now, I just play it safe. Stay close to home. I don’t hug people and avoid shaking hands (everyone looks like germ carriers to me). Taking my supplements and getting rest is my job. But I’m still managing to stay productive. Besides this award winning blog, I’ve got my photography, video side projects, classes and my future appearance on Oprah to consider.

Also, I’ve entered a new chapter where I am far enough in my treatment that I can start sharing my experiences with other Hodgkin’s patients. I can help make up for all of the misinformation (or lack of information) that I had to go through. I remember meeting Vanessa on the hospital floor and I felt, and continue to feel, such relief that I have someone to guide me through some of this. And hopefully, I can do the same for someone else.

Seeing me makes people feel better – they see that I’m still the same ole’ Steve. And I feel pretty good about seeing people, too. It was hard at first, but even though I still feel like Cancer Steve, I’m glad it’s no big secret and not a big deal. It doesn’t define me now.

Well, not as much.

Not sinch I made level Gunnery Sargeant Level 23 of COD:5.

Hope to see you soon.

Keep on keeping on.

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.

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…?