Tag Archives: ABVD

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.

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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.

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: http://www.flickr.com/photos/sdickter/sets/72157621207012598/

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

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.

Words from the big chair

Big chair photo

Check the hair

Sitting in the big chair. Dopey on Benadryl. The Ativan should kick in soon. Trying to count the number of pharmaceuticals going into my body right now. Let’s count together:

  1. Lorazepam (Ativan)  – makes me calm.
  2. Benadryl – to supress allergic reactions. Also makes me sleepy
  3. Acetaminophen – fancy name for aspirin
  4. Saline – 150mg – gotta keep the ole’ kidney’s clean
  5. Aloxi – anti-nausea, so i don’t toss my cookies.
  6. Decadron – steroids, makes dink more homers
  7. viagra – puts a party in my pants!
  8. ABVD – the big four

Ok, they are not giving me viagra. But i asked.

Everyone here is very nice. The facility is clean and bright. They have gingersnaps. I feel like I’m backstage in the VIP room of the Cancer Club. Which is a lot like getting backstage at the Whiskey A Go-Go, except the Rolling Stones have never played the UCLA Cancer Treatment Center (unless I get my wish from the Make-A-Wish Foundation).

I am mostly loopy and nervous. My first chemo treatment in the hospital was a borderline nightmare with the long, long wait and multiple delays. Getting pumped ful of an unknown chemical which makes my hand burn at 11:30pm would probably turn most people off.

But it is very different experience to come to a clinic where all they do is chemo treatments. They are very understanding and patient (so far). They look at the chart and have a plan the entire way through. And did I mention the gingersnaps?

After Ativan and Benadryl this is what my clinic feels like

After Ativan and Benadryl this is what my clinic feels like

And in goes the Red Devil first. Adryomyacin. Turns my pee orange. Given first because it could cause some side effects or discomfort. Let the games begin.

I got the devil in my veins!

I got the devil in my veins!

One down. 3 more to go.

Bleomyacin – This makes my hands go numb.

Vinblastine now. This chemical is made from a plant that grows in Madagascar. How about that.

Dacarbazine – This is the one I have a problem with. It burned my hand last time and I have to be on a slow drip to deal with it. This is mostly a side-effect of using the veins in my arm instead of having a port in my chest. The nurse is trying different things to make this less unpleasant (tingling in my hands, mild pain in IV area).

Good attention from the nurse. Time for more gingersnaps.

Oh, and my white blood cell counts are a little low – White Blood Cells @ 2.7 (4.1-10.9) and Granulocytes were at 1.4.

I’ll let my mom Google those terms and she if she can come up with a diagnosis…

In the meantime, I’ll be getting Neupogen shots which will raise my white blood cells. I want Jen to give me the shot at home – really make her uncomfortable. But we will have our neighbors the nurses do it for us. Always a good idea to have a couple nurses around for these things. They are small needles – like insulin for diabetes.

The Neupogen works with my bones where they make white  blood cells. It will help keep me healthy but could cause bone pain. Everything has its price.

All done. The IV goes beep beep. I feel just like my car after an oil change at Jiffy Lube.

I'd rather be on the beach with this guy.

I'd rather be on the beach with this guy.