Skewered by The Onion

You know you are blessed when your condition is the topic of an article on The Onion.

Couldn’t have described it better myself.

Man With Hodgkin’s Disease Way Over Sick Day Limit

Dude abides

My last post was about how anti-climactic it feels to be nearing the end of my treatments. I left out one important item affecting how I feel.

Yesterday, I found out that my dear, dear friend passed away. He had been fighting melanoma for over 2 years.

I am grateful that he passed peacefully in his sleep. The doctors would have stopped treating him months ago if it wasn’t for his incredible fighting spirit. That’s the kind of guy he was. We were always close but drew even closer as we helped each other through our experiences with cancer. And I will always be grateful for the time we had together.

He will be sorely, sorely missed.

Deadlines

“I love deadlines. I especially like the sound they make as they go whooshing by.” – Douglas Adams

I had January 1st pegged as the date of my big comeback. Start my press tour. Cut a duet with Rihanna. Perhaps be the Grand Marshall at the Rose Bowl parade (damn you Captain Chesley Sullenberger III!).

But alas – I had to hold off another  couple of weeks into the new year.

The good news is: I’m cancer free. My latest PET scans confirmed that. There were some questions about a very, very faint hotspot but the doc’s think its nothing to be concerned about. We will follow up on the next PET scan.

My tumor never really reduced in size. I still have a 10cm lump of tissue in my chest that they think will eventually harden into scar tissue. Although it’s not affecting my heart, lungs or vitals, it was still creating the SVC syndrome that had been giving me problems for the past year and change. I still got dizzy when I bent over. Headaches. Pain behind my eyes. I still wasn’t able to work, exercise or perform any moderate activity. It’s one of the reason that I stopped writing on my blog – it was difficult to concentrate.

The other good news is: I got the stent that I needed.

This past Wednesday, I went into Santa Monica hospital and got my portacath removed and a stent put in in the same procedure. My doctor was fantastic and everything went very well. He was able to widen my Vena Cava from 2mm to 12mm. I now feel 6x better.

I won’t go into details about the procedure, but there was a good bit of me getting wheeled around the hospital (to the wrong places), a fair bit of shaving and I got to take my port home with me afterwards as a keepsake.

Cancer free. No more SVC syndrome.

Ta da.

Why so anti-climactic, Steve? Why no celebration or big announcement? Why do you kind of sound like (pardon the expression) a douche?

Well, first of all, I didn’t go on this journey alone. Because of this blog, I took a lot of you with me along for the ride. And there are certain people in my life now who have had their own share of ups and downs with cancer – Karin, JJ and others. I wish that everyone could have the same outcome as I’ve had. But cancer doesn’t work that way. And that brings me down.

Also, I was told recently that someone said of my clear scans and recent improvement – “It must feel like being re-born.” Although I appreciate the sentiment of this statement, I can’t say I agree with it.

The scars are too fresh. I’m not sure exactly what lesson I’ve learned through all this. I’ll always live with the fear of cancer coming back. Although I’m almost back to ‘normal’, I’m no longer sure exactly what normal is. And part of me feels guilty to be…dare I say it…cured.

I’m extremely grateful. To all of you. To my doctor’s and nurses. My wife and family. I’ve seen the best parts of people and learned a lot about myself and those around me. I’m grateful to not have those chemicals injected in me anymore. To not spend my weekends throwing up. To not have to smell the smell of the doctor’s office every week. I’m grateful for so so many things.

But ‘reborn’? I never died. I just…changed. And now, I’m changed back. But different.

So, I guess I’m learning who this new, changed version of me is right now.

For me, the challenge of being a cancer patient wasn’t only about being a healthier person. It is in some ways about being a better person. I’m not sure why that is. I feel, in some way, that this is also part of the process of being cured.

I’ll continue to keep you informed as to what secrets of life become revealed to me.

As always – thank you for the love and support. I couldn’t have done it without you.

Can you feel it? Hmmm.

Radiation treatment is graded on a pass/fail

Where does the time go?

This summer, every day felt like an eternity. Now, I can’t believe it is already December.

A month after my last radiation treatment and my chest is still red and I lost most of my hair in the area where I was zapped. I look like I’m wearing a V-neck sweater made of hair. I’ll spare you the photos.

I was warned that it would take awhile for my energy level to return to normal and I still find myself sleepy and fatigued some days. Its true that the radiation takes some time to really affect your body so I was more tired after the treatments were done than during the time I was getting treatment. That’s one of the reasons they gave me another month of R&R to catch up. Looks like the doctors do know what they are talking about after all.

Tomorrow – exactly 1 month to the day of my last radiation treatment – I’m going in for my first follow-up PET scan and CT scan. This is to double check that I’m in remission. It is also an important step in treating my SVC syndrome.

The ironic thing in this whole process is that I feel almost exactly the same today as I did a year ago – my head is a little swollen, I get dizzy easy and I sometimes feel pressure in my chest. This is because, even though I am cancer-free, I am still carrying around a large tumor in my chest which is restricting my blood flow. A little gift from Mr. Hodgkins that I’ll probably have for the rest of my life.

Dealing with this condition should be the final step in my treatment. I’m looking forward to getting it all done before the New Year.

So, its the end of a very long year and a good time for reflection. What am I supposed to have learned from this experience?

Well, Huey Lewis said it best – “The power of love is a curious thing.” I think the most important lesson I’ve learned is the depth and breadth of love and support that people are capable of. Not just those close to me, but friends of friends, strangers and fellow cancer patients. It blows my mind when I think of how many people reached out to offer kind words, advice, and support in so many ways.

For Jen and I, this experience has made our world smaller. It has brought us closer to many people and also put us in touch with many, many more. When I look back on this experience, I don’t remember the details of the nausea or the chemo or the radiation – but I remember the emails and the cards and the phone calls. That is the feeling I’ll always carry with me.

For me, spending so much time being a patient has given me more questions than answers. How can I make my time on Earth more valuable? What are my priorities? How can I show my love and appreciation for the people in my life? What makes one day more worthwhile than another? Why are so many things that taste so good so bad for you (I’m talking to you, Girl Scout cookies…)

These are some of the things I’ll be thinking about when I’m laying in the big machine tomorrow getting my innards mapped.

And, not to leave you hanging, here are all the lyrics to that Huey Lewis song that I can’t get out of my head: Power of Love

You’re welcome.

A month and half later…

After my last chemo on October 1st, my doctors gave me a month of rest. I decided that part of this rest period also involved me putting the blog away for awhile. Taking a step back…pretending to not be a full time patient for a bit.

I went home to Philadelphia for a couple of weeks. Caught up with friends and family. It was wonderful and refreshing and great to see everyone. I thoroughly enjoyed the autumn weather – the changing leaves, the fall ’snap’ in the air in the morning. My Grandmother’s ravioli and meatballs. The Wawa’s and the cheesesteaks and watching the Phillies in the World Series. The homemade pecan pie – my favorite food in the entire world. The ‘I’m So Glad This Isn’t Los Angeles And I Don’t Have To Figure Out How To Keep Myself Busy All Day’ feeling.

I also went to Pittsburgh for a few days to see a really good friend of mine who is going through some difficult times. This friend has always been a leader in our lives – the kind of person that brings people together, motivates all of us to make snowboarding trips happen and is always on top of the newest art show or best bar in town. Even though we talk all the time, I still didn’t know what to expect when I saw him (and he didn’t know what to expect when he saw me).

Instead of it being a week of sadness or frustration at our situations, it was a week of celebration and looking ahead. We made tracks around Pittsburgh – saw great exhibits and ate good food (I still have mixed dreams/nightmares about the Primanti Brother’s Sandwich) and we talked a lot about the future. What it holds for us, what we can and cannot control and what changes we’re going to make when we stop being cancer patients and instead become cancer survivors. My friend is – in one word – inspirational.

Yes, those are french fries inside the sandwich. Crazy Yinzers.

The month of October was a good break from the intensity of the chemotherapy and it was a nice way to say goodbye to The Longest Summer of My Life. But I couldn’t stay hidden away in Pennsylvania forever.

I started radiation on November 2nd. It’s weird.

Just like chemo, the routineness of the whole process is somewhat unnerving. The radiation therapists must take about 30-50 people/day on each machine – and they have 4 machines in UCLA. That’s a lot of people getting a lot of radiation in just one hospital. It boggles the mind.

In the beginning of October they ran a ’simulation’ on me to get me ready for radiation treatment. They created a very specific ‘radiation field’ for my chest – zapping the tumor and as little of the surrounding area as possible. I’m getting a low dose of radiation (according to the doctor) and they don’t expect any long term side effects. But still, it’s generally not good to be getting intensive radiation treatment on your body. Hell, we’re not even supposed to sleep too close to our alarm clocks or put cheap plastic in the microwave…I walk to the hospital every day at 10:10 am. Breeze through reception and straight back to the radiation waiting room, full of magazines and puzzles and a fish tank. They run a tight ship in the basement of UCLA and they make a real effort to take each patient on time – so it really becomes routine after only a couple of days.

Did I mention the tatoos and lasers? During my simulation, they put 4 tiny tatoos on me – one on each arm and two on my chest. There are lasers placed around the room and in the machine which allows them to line me up the same way under the machine each time.  I’m hoping I can turn the two tiny dots on my chest into a tatoo of a battleship or a soaring American Eagle one day.

With enough radiation and bit of work, one day I could look like Bluto.

I lay perfectly still and the technicians ominously leave the room. The machine zaps me once from the bottom and once from the top. The whole process takes about 10 minutes. And off I go.

If you want to see a photo of what the radiation treatment looks like, follow the links. I’m not posting photos here for everybody in case some of you find it disturbing to see a photo of me lying on a table with my shirt off:

http://www.flickr.com/photos/sdickter/4110336230/

http://www.flickr.com/photos/sdickter/4109571627

The treatments have made me tired and given me a wicked bad sore throat. The radiation dries out my throat and esophagus, making it difficult to swallow and eat. Lozenges help and I now chew my food the recommended minimum of 20 times which makes it easier to swallow. Once again, mom was right.

So, that’s where I’ve been the past few weeks. And how are you?

Turning the corner

Just writing a short message on the eve of my 12th and final chemotherapy session.

Some thoughts going through my head:

1. Thanks. To everyone. For everything.

2. I’m looking forward to turning the page and putting chemotherapy behind me. I’m also nervous about what’s to come. I’ve gotten used to the structure of having doctor’s appointments every Thursday, every other weekend I enter my fortress of solitude and the energy I feel when my nausea passes and I get to start my week from scratch. Now I enter a new stage in my treatment…and a new stage in my life. Hmmm….

3. Its not over yet. I get the month of October off to let my body try to get back to a normal state – rebuild my immune system, get my energy back. Then, in November, I face radiation. Which isn’t nearly as exhausting as the chemo but still has its own set of side effects. After all that, we can deal with my blood flow. Then, the doctor’s tell me, it will take months for my body to get back to ‘normal’. But one step at a time, right?

4. What is it that I’m going to take away from this experience? There is a saying that a person is “Blessed with cancer”…which definitely doesn’t make sense when you are first diagnosed. But, as I begin my journey towards recovery, I’m curious about how these past few months will influence the rest of my life.

I’ve also heard people say that sometimes they miss the feelings they had while they were in treatment. You only have to look at some of my earlier posts to see what this means. In the beginning, I found a new perspective on life – on traffic, on friends and family, on health. As my life returns to normal, will I lose these feelings? Was my ‘normal’ the best normal it could be? Or should I re-adjust my priorities and outlook on life?

I’ve been spending a lot of my time thinking about some of these things. Mulling over my own perspective of my life.

I don’t have any answers today…just questions.

But tomorrow I will have solved one of my problems – putting chemo behind me.

See you on the other side of the weekend.

Pics and things

I’m not here to celebrate the fact that I’ve only got one more chemo session.

(But let me say – HELL YEAH!!!)

#11 came and went without too much incident. Feeling a little more sicky over the weekend. A lot of fatigue during the week that seems to linger all week. But no new complications. As my friend reminded me – I know what a chemo weekend is like and I know what it takes to get through it. So that’s what I do.

In the meantime, I’ve been meaning to share the photos I took for my photography class back in July. For our final project, we could pick any topic that we thought we could cover through a series of photographs. I tried to avoid the subject of cancer. But with all my limitations and with how much my situation has shaped my life the past few months, I don’t think I really had any choice.

I focused on the things in my life that have changed because of my Hodgkin’s Disease. I tried to take the photos without judgment and without imbuing the photos with a lot of emotion. More of a ‘matter-of-fact’ look at my situation.

Enjoy:

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.

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.

What condition my remission is in

Hello all.

Been a lot of developments since last we spoke. Where to begin?

The month of August was very difficult for me mentally. I heard it from other cancer patients and from those going through the long process of Hodgkin’s treatment. You start out all fired up – a kind of ‘honeymoon period’ where you have the physical and mental strength to fight this thing with everything you’ve got. But somewhere along the way, it starts to grind you down. For me, it started to happen during my 6th chemo treatment. And from there, the process wore me down more and more.

I’ve figured out why there are so many cancer support groups. My friend referred to cancer as ‘A thinking man’s disease’ because you’ve got so much time to let things roll around your head. And, even though I’ve got ‘the curable cancer’, the game is the same and the chemo treatments, doctor’s visits and rollercoaster ride of being a full time patient eventually takes its toll. I always knew that I was going to make it through this process, but it took me awhile to realize that I was going to need a little help along the way.

So, I’ve been trying out some meditation classes and any other tools I can use to keep my mind sharp and focused on getting healthy. The support I’ve received has been overwhelming, to say the least. Friends and family, acquaintances and co-workers, fellow cancer patients, doctors and social workers – everyone stepped up to help me through a very difficult time. Going through the treatments, waiting for scan results, feeling worn down, living in a ‘cancer bubble’ – I’m learning to take it one day at a time.

Another good quote from my friend (actually, from Deepak Chopra) – “Our cells are constantly eavesdropping on our thoughts and being changed by them.”

I learned the hard way, this isn’t just a physical fight, but a mental one, too.

With that in mind, I started acupuncture with the amazing Dr. Mao in Santa Monica and it made a difference right away. The Tao of Wellness was recommended to me by EVERYONE I spoke to regarding acupuncture for cancer patients. And now I can vouch for them myself.

I had almost no nausea all weekend and my energy levels were way up. I almost didn’t know what to do with myself since I was so used to crashing out during a chemo weekend. I’m not sure if its more of a mental pick-me-up or if those little needles really do make a difference. But I have another appointment scheduled this Friday – the day after treatment – and I’m looking forward to it.

I actually get treated by Jason Moskowitz – who is, I’m sure, the only Jewish acupuncturist in Southern California. But he also seems to get the job done.

I had a great visit with my brother, Dad and my step-mom over the weekend. It was not only great to see everybody and put their minds at ease about my condition, but it was very rewarding to have the distraction and feel like a ‘normal’ person for a few days. Going to an Angel’s baseball game, taking a drive up Malibu and just hanging out and watching a movie with the family made for a very enjoyable time and a great pick-me-up. I wish they could have stayed longer.

But really, who wants to hang out in Los Angeles when its on fire and over 100 degrees?

Finally, and perhaps most importantly, I got the results back from my PET scan. There was some confusion early on about the results. A PET scan works by having irradiated sugar cells travel to places in the body that have high metabolic activity – which are places like the brain, muscle damage and cancer cells. With my condition of restricted blood flow, there was some mixed results with ‘blood pooling’ – so it was difficult to tell if they were cancer sites or just areas of high concentration of the sugar cells.

Of course, it couldn’t have been straightforward results. That would have been just too easy.

So, with a little more analysis, my oncologist told me that I am in complete remission. That means – no more cancer cells in my chest or neck. I still have one heck of a tumor in there (about 13 cm), but the chemo is working and I can be considered cancer free.

It took me a few days to let that sink in. You’d think I’d get online and blog about it right away but it has taken a little time for me to come to terms with the fact that I’m moving from one stage of my treatment to another. I’ve spent 4 months looking forward to these test results and now that they are here, it is a little difficult to believe.

My next step is talking to the radiologist about how/when to begin my radiation treatment. He may suggest that I cut my chemo treatments back from 12 to 10. However, I was told to never cut my chemo treatments short, especially with a ‘bulky tumor’ of my size. So, even though my oncologist was giving me good news, I still laid into him about the possibility of changing my treatment schedule. Determining my next steps is a work in progress.

Next up – treatment #10 on Thursday followed by meeting with radiologist on Friday followed by 2nd opinions about everything next week. Slip in an acupuncture appointment and some meditation time and I think my September is off to a good start.

I’m looking forward to moving on to the next steps in my treatment. But not without being sure that I’ve done everything I can to kill the cancer and make sure I never have to go through this again.

One day at a time. I’ll be talking to you soon.

Words from the big chair #6

Ok, so this isn’t really number 6 for me. Its actually #9. Which means I have 3 more chemo sessions left. Which makes me feel good.

In the past couple of weeks, I’ve been taking steps to get my mind back in touch with my body. For awhile there, I was so caught up in looking at the future that I stopped taking care of the present. I had to re-focus myself that ‘getting better’ and healing is my job these days and everything else will work itself out in time.

All of this was probably exacerbated by my PET scan I had this week.

The results are very good – not perfect, but I knew I’d have more challenges down the road.

My upper chest, throat, abdomen and surrounding organs are all cancer free. The tumor has shrunk down from 16cm to probably something about the size of an orange. So the treatments are working and things are getting better.

Unfortunately, the PET scan works by detecting high metabolic rates in the body – the sugar cells congregate around the cancer cells (which use the most energy) and that is how the doctors can detect the cancer cells. From the blockages in my vascular structure (veins), I have some ‘blood pooling’. This pooling can give signs that there may be cancer cells, or it may just be an area of high metabolic rate.

I think I’m getting the medical terminology right in all this. But the bottom line is – it is difficult to tell if I’m in full remission with blood pooling or if I still have some cancer cells floating around in the tumor. More tests and studies will be needed.

My next step is getting me prepared for radiation in November. The radiation might be a little tricky since my tumor is so big and is located close to the heart and lungs and trachea…but I’m not the first and I won’t be the last to get this procedure. We’re working hard to make sure I get the best radiologists possible.

Also, the blocking of my SVC (Superior Vena Cava) will have to be addressed – probably by a stent (a metal sheath that will hold my veins open). Hopefully, this can be done the same time they pull out my portacath.

What does all of this add up to? Getting there, one day at a time. Its nice to see all my remaining chemo sessions on one piece of paper. And its great to start focusing on the rest of the procedures that will get me back on my feet and out of this apartment for awhile.

Every day I put a little more fear behind me and a little more hope in front.

Thanks for following along.