Jen Scared The Helicopter Away

I wanted to mention something amazing that happened yesterday. If it also shows you how amazing my wife is, then so be it…

There have been Iranian protests at the Federal Building about 2 blocks from our apartment almost every day. Large crowds gather, they block traffic, people honk their horns until 11pm at night and it generally screws things up on Wilshire.

Now, we have no problem with protests. Even if you want to do it in front a building that has actually no connection to the thing you’re protesting about. I’m all for protests. I’ve been part of a few.

But maybe not by my apartmennt…every night…for a couple of weeks…with bullhorns…and cars racing down the street with flags on them. Maybe it’s a bit much for the neighbors at some point? Like all day on a Sunday? Just saying.

This was an extra big protest. They closed a lane or two on Wilshire. I think a few hundred people came out for it. My crowd estimates are largely based on how much parking everyone took up – but there was definitely enough people to make a real impact on the corner of Wilshire and Veteran.

The weirdest part was a helicopter that kept circling overhead. At 10am it was circling. I didn’t think too much of it in the morning – figured it was a police helicopter or press. We went out for the day when the protest was just ramping up…

…and we returned when it was breaking up a few hours later. And we could see the helicopter – still flying in circles over our apartment building and coming darn close to the office buildings that are across the street from us. We watched it fly around for a few minutes – it would come in low over our building every 2 minutes or so…over and over again. Also, it didn’t have any markings on it – just a black helicopter flying low over our apartment for hours.

Super-community activist and super-spy Jen Berry was on the case. She called the police department and got shooed off. She looked online for more contact information. She finally called the FAA Emergency Number for the Los Angeles area (she got the number off their website) and a guy actually answered the phone.

Whoever this guy was with the FAA – he thought an unmarked black helicopter flying low over houses and coming within 100 feet of the office buildings was also strange. He’s look into it.

Jen and I took our binoculars up to the roof to get a better look at this mysterious copter. The people sunning themselves didn’t seem to mind that the two of us were running back and forth along the pool and watching the helicopter through binoculars. Maybe if we brought the camera we could have attracted some attention…

About 15 minutes after Jen called, another helicopter came in from the direction of LAX. As this new helicopter got closer, our mystery copter flew off. We’re not sure what was going on up in the sky…but we do know this: Jen Scared The Helicopter Away.

And that’s the kind of care I’m receiving.

Shout out to my peeps

Cards cards cards

Just wanted to say another thank you to everyone who has given me much love and support over the past couple of months. As you can see  from the wealth of cards I received, my birthday was full of treats in the mail.

And the support keeps rolling as I recently heard from a couple of people who are also going through Hodgkin’s Treatment. One person is a couple of treatments ahead of me – and that gives me strength to keep going. And one person is a couple of treatments behind me – so I can help show them the way.

So much from a simple blog that was mostly meant for me to pass the time in the hospital. I’m glad I can help – but I can’t do it without all of you.

Also, just a friendly reminder – I’d prefer that anyone who wants to send me any gifts instead makes a donation to The Leukemia and Lymphoma Society or supports one of my friends running in a Relay for Life or a Team in Training. I’ve got plenty of Netflix movies, DVD’s and PS3 games to last me the whole summer and your money is better spent on the greater good than just little ole’ me.

Victoria – Team In Training: HERE

Heidi – Relay for Life: HERE

Leukemia & Lymphoma Society: HERE

My best to all.

New photos

Hey y’all.

I put up some new pictures of me waiting to get my Portacath put in and also of my 5th Chemo session.

They are a little graphic – if you don’t like to see stitches or needles or photos of my right boob.

Can be seen on my Flickr page: http://www.flickr.com/photos/sdickter/sets/72157618699964697/

Pills

Pills pills pills pills.

My Integrative Oncologist has me on a regimen of daily supplements. I also have a couple of prescription drugs that I take for my stomach and nausea. Oh yeah, and let’s not forget the sleeping pills, thrush lozenges, Tylenol, fish oil and other meds that I have at my disposal.

Needless to say, I have a spreadsheet to keep it all straight. I wouldn’t want to be mixin’ up my B’s, C’s and D’s vitamins? Or taking double constipation meds? Or a laxative before bedtime? No. No I wouldn’t.

Here’s some pics to give you an idea…

My pills for the week.

Big holder on top is AM pills. Small holder on bottom is PM pills.

...Tuesday, Wednesday, Thursday, Friday, Saturday...

Pills I take each morning.

Any port in the storm

Apparently, I will be getting my port put in on Wednesday. Due to a scheduling problem.

I get to yell at my doctor’s office again. Oh boy.

One third

I am 1/3 of the way there.

4 of 12 chemo treatments done.

My tumor is 1/3 of its original size in volume.

I just ate 1/3 of a tub of ice cream to celebrate.

I had a CT scan (now with contrast!) on Thursday and Dr. Klein called me with the results on Friday. He was excited. I was excited that he was excited.

See how excited Dr. Klein is!

My tumor has shrank by 1/3 of its size. He said he would show me the first CT scan to compare it with this one. He said that originally, my tumor was “huge”. That’s a quote. That’s the word he said. He never said that to me before. My 2nd opinion doctor told me it was large…and he’s seen a lot of tumors. But no one used the word ‘huge’ before.

But its not ‘huge’ anymore. It’s 1/3 the size of ‘huge’. It’s a little less than ‘hug’.

Dr. Klein also told me that I don’t have any blood clots – that the shrinking tumor has allowed my vascular system to open up…except for one spot where it is still pinched. So I’m not out of the ‘Reduced Blood Flow’ woods yet. But I won’t have to have any surgery or treatment for blood clots if things continue to clear up in this way.

This is all good news. Sorry – great news. This news gives me renewed strength to keep fighting the good fight.

Remember – the size of the tumor is not an exact sign of me being cancer free. I still have to pass a PET scan and be PET NEGATIVE. That will mean I’m in remission and cancer free. I’m not sure when my next PET scan will be. One step at a time…

The next step is for me to get my ‘port’ put in on Monday. That way I won’t have to get chemo in my arms which causes me discomfort and phlebitis. And is also a huge pain in the ass because – although my attitude has improved – I am sick and tired of getting IV’s put in my arms. I think my veins are onto this whole process and they are making things more difficult as things continue.

And some more good news – which isn’t really news because it was always a fact, I just didn’t realize it – My last chemo is October 1st. Which means I’ll be done with this whole process around Thanksgiving. For some reason, I’ve been telling everyone that I have chemo until November 1st. Because apparently one of the side effects is reducing the patient’s ability to tell time.

October 1st is last chemo, then rest period, then radiation, the Santa brings presents to good girls and boys.

And here I’ll say sorry for the downer posting last time…it was my birthday and I felt sick as a dog and I was more focused on the part of me that felt like crap rather than the part of me that was getting better. I’m going to have those days when I hate this process. And I’m going to have those days when I see nothing but blue skies ahead. It’s a boxing match…some times I’m up against the ropes.

Me - Every other Thursday through Monday

Today I’m having a blue sky day.

All the small things

I spent my weekend in chemo induced solitude. Well, I spent it with Jen…who spent her weekend going to the store for me, cooking my meals and generally being Jenny the Nurse. She continues to amaze and impress me.

I haven’t been having many deep thoughts lately –  something to do with getting used to the routine of all of this. Which is exactly why I feel like posting.

Before, I tried to appreciate all the good, little things and not sweat the small stuff. I tried not to worry about the traffic. I tried not to get annoyed with the people in line at the store. I tried not to let things get to me.

But recently, it’s all the small things adding up together which are getting to me. Most of the things I didn’t have to worry about before – or some things with new perspectives on them – are really bugging me. (Cue rant)

Take eating for example. Although it is still a mostly pleasurable experience, now I worry about everything I put in my mouth. Is it nutritional enough? Is it a cheat? Could I be substituting something else in its place? And why am I insisting on ordering wheat bread when I’m still getting the french fries on the side? Does this make me as much of a hypocrite as the person who orders a Big Mac and a Diet Coke?

Is this me now?

And the pills. And the shots. And the blood draws. And this haircut that makes me look like a cop.

I think I spent the past month trying to get used to this stuff. And now that I’m a little used to it, I’m learning to hate it.

I hate having to organize my pills. I hate giving myself the Neupogen shots. I hate trying to work Glutamine into my diet 3 times per day. I thought the infusion center was a nice place, but I’m starting to hate that too.

I hate spending this much time worrying about myself.

As the chemo side effects get a little worse each time, I can safely say that I’m starting to hate this whole thing. I’m not depressed about it and I’m not giving up the fight – it is just something that I’m looking forward to being over. And that is a huge motivator.

I still consider myself very lucky that there is an ending to all of this. That I have something positive to look forward to. I feel I may have used up all my positive karma in one fell swoop by even having the chance to put this behind me.

This computer monitor represents my lifelong supply of my positive karma. And this is cancer throwing it all out the window.

It feels weird that I am 1/3 of the way done with my chemo treatment…and even weirder that I have 4 1/2 more months to go.

For now, getting better is my job. I’m still getting used to my new office, my new coworkers and my new responsibilities.

I wonder if, one day, this will all feel routine and not feel ‘special’ anymore? Like working with a Technocrane or putting marks down for A-list celebrities or carrying heavy cases to the tops of office buildings in downtown LA.

I guess then I’ll start looking for a new job. I can’t wait.

PS. Speaking of small things – don’t worry if I don’t post regularly. I’ll keep everyone updated. But I don’t always feel like writing and there isn’t always something to write about. So no need to fret if you haven’t heard from me in awhile – consider it a good sign that everything is status quo.

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

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?

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.

Cancer quote of the day

My veins are filled once a week with a Neapolitan carpet cleaner distilled from the Adriatic and I am as bald as an egg. However, I still get around and am mean to cats. – John Cheever

No cats in sight.

How I learned to stop worrying and love Glutamine

I feel like I spend a lot of time complaining on this blog. Complaining about my discomfort. Complaining about people who are bad at their jobs. Complaining that Miley Cyrus won the best song award at the MTV Movie Awards (the only time when Miley Cyrus will beat Bruce Springsteen at anything ever.)

Not a winner in my eyes.

Instead, I want to share with you an uplifting experience I had yesterday. At a doctor’s office. I know…I almost don’t believe it either.

I had an appointment at the Simms/Mann UCLA Center For Integrative Oncology. This is a department run by Dr. Mary Hardy – a woman who travels the world talking about how traditional cancer treatment (chemo, radiation) can be combined effectively with eastern medicine, nutrition, supplements and holistic treatment. She’s the person who connects the dots between all the different theories of cancer treatment and does so by making a practical plan based on each person’s individual situation.

From the moment I saw the office down the hallway and noticed the zen rock garden, I knew this was going to be a different experience than my previous doctor’s appointments.

Dr. Hardy's office

The first thing they did was take measurements of my size, weight, body mass index and calculate how much lean fat I have. I am now at an ideal weight for my size after losing 10+ pounds from the Hodgkin’s Disease back in December. It took cancer to get me in shape. Would Alanis Morissette say this was ironic – “Dropping 10 pounds when adding a 16cm tumor in your chest? Isn’t that ironic? Dontcha think?”

After learning that I am a reasonably fit, 33 year old male in the prime of my life…I spent over an hour with Dr. Hardy discussing my situation, nutritional advice and supplements that will help me increase the efficiency of my treatment as well as help manage the side effects. We also shared a few laughs along the way.

What I liked immediately about her was that she asked where Jen was. She didn’t ask me if I was married. She didn’t ask me what was wrong with me. She had read the paperwork I had submitted, she remembered the information and she engaged me immediately. This is way better than the phlebotomist that tried to test me for pregnancy. For once, I didn’t have to fight for my medical care or worry about my treatment – I was able to trust the person who was caring for me.

This was such a welcome relief that I actually got a little choked up about it. I wasn’t upset about the cancer or the chemo – I was touched by empathy from a health care provider.

She laid out a nutritional and supplemental plan for me based on the type of treatment I was receiving and the side effects I am experiencing. Some of my plan is:

• Allopurinol for my stomach
• Mutli-vitamin
• Whey protein – I’m on a high protein diet now, over 30g/day
• Fish Oil
• Flax Seed
• L-Carnatine and Co-Enzyme Q10 for my heart
• Immpower and Glutamine for my immune system
• Melatonin

And the list goes on…

How to sneak protein into my diet. The importance of shakes. How to eat when I’m too nauseous to eat. How to make myself stronger. How to make this suck less. And the doctor will follow up with me after my treatment is done to keep me this way.

A bit of inspiration in an otherwise frustrating time. We heard good things about the Integrative Oncology department. I trust them. And I look forward to taking my 20 pills a day.

Beats giving myself shots, that’s for sure.

(Damn. I ended on a complaint…)