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.

Mind games

August 22 will mark the 4 month anniversary of my trip into the emergency room. It’s been an interesting few months.

Like most cancer patients, I came out of the gate swinging for the fences. I listened to the doctors and nurses and all of their advice. They told me this would be a boxing match that got harder as the treatments went along. I talked with social workers who told me there were support groups when the going got tough. Everyone was impressed with my fortitude and strength and it looked like I was going to breeze right through this treatment.

A couple of days of nausea after the chemo. Back on my feet on Monday. Trying to make life as normal as possible during the in-between weeks. That was my first few months.

But about half way through, something clicked – my life isn’t the same. This isn’t business-as-usual. And the more this realization crept into my head, the harder it has become to pretend like everything is status quo.

My last couple of weeks has been more of a mental battle then a physical one. Coming to grips with another 3 months of my life on hold. Trying to fill up my days. Unable to find inspiration in my work or projects. Everything seemed to grind to a halt.

Sure, I have the ‘curable cancer’. And logic tells me that in a couple of months my life will return to normal – waiting for the next job, looking forward to days off, life not broken up into ‘good’ weekends and ‘bad’ weekends, no more Magic Monday Mornings. But whatever my life is like a few months from now doesn’t really impact the here-and-now. And its the now that I’ve been dealing with.

So that’s where I’ve been. That’s why I haven’t been posting on my blog. I think you can tell by my last couple of blog posts that this is the direction I was headed – spending my time counting the days ahead instead of enjoying the day in front of me.

This isn’t an unusual place to be. That’s why the doctors and nurses and social workers all give you their advice when you start the process. But who wants to listen to them tell you how hard its going to be? I’d rather think of this as an extended vacation where I can hone up on my Playstation skills…but even that gets old, fast.

I’m on the same track as so many cancer patients before me. I’m sharing my experiences with those currently going through treatment and those who have beaten cancer. Its all about getting over the hump to reach those better days ahead. This too will pass.

As this goes on, I thought it was important to update everyone as the latest with my condition. Let’s break it down:

I’ve got an important PET scan on Monday. This will show me how much of the cancer has been beaten. Best news is that I could already be in remission – cancer free. Or else, the treatments are working and there’s still some abnormal cells to beat down. Or, worst case, the treatment has stopped working as well as it should and we need to make some adjustments. But all signs point towards the treatments working in full effect – and that’s what I’m counting on.

I recently had an echocardiogram on my heart which showed that everything is normal with my ticker. The chemo drugs can sometimes do damage to heart and lungs, but it seems like I’m clear of that.

The PET scan is an important milestone. It will tell the doctors how effective my treatment has been and where to go from here. I can start to consult about my radiation treatments in November. And, also important, I need to deal with the SVC Syndrome that I’m still experiencing – the blocked veins in my chest. I still get dizzy when I bend over or exert myself too much and I know I still have a 3-5 centimeter blockage above my heart. After the PET scan, I can start to deal with that, as well.

So, yeah. There’s still a lot on my plate when it comes to treatment. But all of this will take care of itself. I’ve got a great team of doctors and nurses working on me. I’m looking forward to good results from the PET scan. And, in the meantime, I’m re-focusing that this is a time meant for healing – my goal is getting better and everything else is secondary.

Still, tho, the Playstation does come in handy…

My best to all. Look forward to seeing you soon.

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 #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.

Self Consciousness and Strength

I’m reading the Lance Armstrong book “It’s Not About The Bike, My Journey Back To Life”. A good friend gave it to me for inspiration and I hesitated about opening it up. Most of the time I don’t want to be reminded about my condition. And I was afraid that reading this book would give me one more reminder of what’s going on.

After Chapter 1 I was so inspiring that I put on one of those popular yellow Livestrong bracelets. The book is that good.

Lance (and we’re close enough buddies that I can call him Lance…I did work with him 1 day in Austin for an insurance commercial, so we’re tight)…anyway…through his book, Lance has put into words a lot of feelings and experiences that are difficult to share and difficult to describe. I’m learning a lot about my condition through his experience. Especially, the similarities of the experience of having cancer, no matter what type it is.

For example, he mentions a moment when he decided he wasn’t going to be self-conscious about his condition. It happened early on in his treatment – I believe it was after he had to go to the sperm bank and his mom and two friends went with him for support. Imagine finding out you have testicular cancer on a Thursday and by Saturday afternoon you have to muster some kind of excitement so you can hedge your bets against the radiation making you sterile? For most cancer patients, they don’t have to imagine it – it’s a reality. And one that quickly strips you of your notions about what experiences you share with other people.

Through reading his story, I understand now that there is a difference between being self-conscious and being strong. And I think one can be mistaken for the other.

From almost immediately after my diagnosis, I decided not to be self-conscious about my condition. I didn’t intend to ’share’ my experience with the world, it just sort of happened this way. I made a decided to not try to cover up the experience, but instead share it with people who are interested. I’m happy to answer any questions. I post photos to share the experience even more. The scars, the hair, the cancer – there’s no point in pretending its not here, so why be self-conscious about it?

But this is not a sign of being strong. It may be a sign of narcissism, but all of this ’sharing’ doesn’t make the experience any easier. Just because I can write about my chemo doesn’t make the anxiety any less real. Answering the questions about what is going on with me doesn’t those answers any less bitter tasting in my mouth when I give them. My willingness to share – to not be self-conscious – is not an example of my strength.

Strength is giving yourself the shots. Taking the pills. Getting the chemo. Dealing with the phlebitis. Following the doctor’s orders. And questioning the doctors when you’re not sure of their answers. Strength is fighting the fight and not letting the cancer have control.

As my friend said – “The disease doesn’t define the person, the person defines the disease.” This friend has shown more strength in his experience with cancer then anyone else I know. And he didn’t have a blog to brag about that strength – he just did what he had to do.

The best – and most unexpected – by-product of my blog is that I am in touch with other Hodgkin’s patients around the country.

Early on, I drew a lot of inspiration from a girl I met in the hospital while I was there. She was 4 treatments ahead of me and she was able to shed light on a lot questions and concerns that I had. Now, I’m able to do the same thing for others. Through my lack of self-consciousness, I can share the nutritional advice I’ve been given or compare treatments with other people. Through this sharing of knowledge and experience, we are able to find more strength.

Reading Lance’s book has helped me better define my own experience with cancer and examine my own strengths and weaknesses. And it might be a cheesy yellow band of plastic, but because Lance Armstrong wasn’t self-consciousness, this Livestrong bracelet is now a symbol of the strength that all cancer patients share.

People are awesome

I feel good today.

Check that – I feel great today.

My usual chemo-zombie-sicky feeling cleared up by Sunday night (after a long Sunday afternoon nap). I woke up this morning with a desire for coffee – which is usually the first sign that my body is returning to normal.

Also, the problem with my portacath shouldn’t be a big deal. It should just be a surface infection that is supposed to clear up with the help of some antibiotics. The doctors are hoping that I can start getting chemo in the port by my next treatment. Nothing is for certain, but I’ll take a little good news.

Why else do I feel good today? I feel good because I spent most of last week feeling bad. Hitting the half way point of chemo left me feeling like there was a lot of fight behind me…and still a lot more fight left to come. It left me feeling exhausted and anxious. It left me feeling a bit sorry for myself. The rollercoaster that is my cancer treatment had hit a dip.

But mostly I feel good today because a lot of other people have taken the time to make me feel good. A friend at work asked about me – someone I didn’t even know was aware of my treatments. That was very nice of him.

I got a great postcard in the mail from friends in Spain. And an unexpected card signed by some friends and strangers from New York.

I got good news on my blog from a fellow Hodgkin’s patient that I’ve never met. I heard from my Hodgkin’s buddy that I met in the hospital when this all began. And another cancer survivor friend just keeps on keeping on – reminding me that this to will pass.

I feel good today because I have so many more reasons for feeling good than feeling bad.

And I want you all to know that when I have to take a deep breath and give myself a shot – I think of all of you. When I think of my next treatment and my stomach flips over – I’ll think of all those strangers in New York who are rooting for me. Port or no port – when the needles come, I’ll think of my fellow Hodgkin’s patients. I think of my family and friends and fellow cancer patients and strangers who have taken an interest.

I feel good today because its Monday and I’m getting better and people are awesome.

Thanks for being awesome.

Awesome.