Tag Archives: Side Effects

Day 6/-3

Hello all.

I’m still handling the chemo well. Tomorrow is my last day for chemo infusion. Ever. You hear that – LAST CHEMO EVER!

So I’m pretty excited to put chemo behind me. I’m done with this. Last year was a thrill. This year was a bit of a pain in the ass. Now I’m for the big kill and I think its time I put this behind me. So, sayonara chemo.

Besides some queasiness and a couple small side effects, I’m feeling rather well. The doctor’s have started to warn me that the worst is yet to come. But I’ve faced down the side effects before…and I’ll do it again.

The two high points of my day are taking a bath (no one can bother me in there) and crossing off a day on the calendar. Thought I’d share:

I won't give you a photo of me in the bath, thank you very much

Tomorrow makes day 7. If I stick to my schedule, that means that I’ll be a third of the way to home.

Some other good news: the charge nurse told me today that room 6111 is special – everyone in this room goes into remission. And I don’t think he was bullshitting me.

And the Eagles won.

I’ll take all the hope and good news I can get.

Lots of love to you all. Thanks for all the supportive comments and messages.

 

Day 4/-5

Hello all, from my perch on 6E, UCLA Ronald Reagan Medical Center.

Day 4 of my visit. 5 days until I get my stem cells put back in.

So far, so good. I’ve been handling the chemo pretty good, or so the doctors tell me. A little nausea. A little headachy. A little worn out at night. Apparently, the first and last days of chemo are the worst. The middle days are pretty benign. I get about half way through the day in good health until a bit of queasiness sets in. Right about…10 minutes ago. So, I’ll be friends with the porcelain god for the next few days.

They tell me that next week is the roughest. Once my counts drop I’m going to get visited by all sorts of side effects, most of which I’ve had before. So it is kind of like expecting old friends. Or old enemies, I guess. Mouth sores will be the biggest problem. Nausea. Lots and lots of fatigue.

I do my laps around the floor. I’m not allowed to leave the wing, so they are pretty quick trips. I’m sure they will get longer as I slow down. They also gave me an exercise bike, which tells me that they think I’m young and active or they think I’m fat. I’m so full of saline right now, I’m leaning towards the latter.

I’m also pushing to get my room switched to the other side of the floor. I have a pretty terrible view of the other wing of the hospital. And people can see in my room at night as they wait for the elevators. I’m not doing anything exciting for them to see…but still, the other side of the hospital has a view of Westwood and the ocean in the distance. The sun makes a big difference and since I’m here for an extended stay, I might as well push for the best comfort possible.

So, between the computer, the DVDs, books, exercise bike, PS3, magazines and other assorted oddities…sounds like paradise? Except for the constant stream of doctors and nurses, beeping IV poles and essentially being held prisoner in this room. At night I get some anxiety when I try to fall asleep. As long as I focus on the short-term, things stay together. I can’t think about tomorrow or next week or two weeks. I can only keep my eye on pieces of sunshine and know that I’ll be out there soon.

And we’ve been decorating – Ezekial and Eliana brought me a framed picture of a frog and a rainbow. I’ve got photos of all the dogs and cats and kids in my life (which I have to keep explaining to the nurses that none of them belong to me). I’ve got inspirational phrases and a calendar to count the days. And one photo of Golda Maier (which needs no explanation…right?)

Like home. Only with more poison.

I’ll try to check in again before things head too far south next week.

Be well. And thanks for thinking of me. I’ll see you soon.

Where the sideburn ends

This chemo is not like your other chemo. This chemo doesn’t f**k around. This chemo will suck you in, spit you out and put you through the ringer. Even when you feel like you’ve got this chemo all figured out…its gonna throw something else at you in the morning.

No one said this to me. The most I got was: “Yeah. Its kind of like ABVD from last year. You’re experienced. You should be fine.”

Hmph. This time I didn’t even get a pamphlet.

But you know what? Today, I am fine. Sure, I had to shave all the hair off my head. But it was a small price to pay for also getting to eat a big, juicy burger and spend a sunshiny day with my beloved wife. Chemo #1 may have knocked me down, but I got back up again.

The blood clot has cleared up. The rash is gone (it may come back after each chemo. We shall see.) The mouth sores were the worst. Almost a full week without being able to talk or eat anything solid. The folks at Jamba Juice know Jen by sight. I’ve rinsed my mouth out with all kinds of artificial saliva, baking powder/salt/hydrogen peroxide concoctions, ‘magic mouthwash’, Biotene, mycostatin and plenty of other stuff. I took a sip from protein smoothie that burned my mouth so bad it brought tears to my eyes. It sucked. We talked for some time with a couple of doctors on steps we can take to prevent, or at least cut back, on the mouth sores next time. Fingers crossed about that.

For those of you interested – the chemo attacks the fast growing cells of my mouth. In addition, when my white blood cell count plummets, my body is unable to fight off the fungus that naturally grows in your moth. So I had a mixture of thrush (fungal infection), cold sores, ulcers, yeast and probably some other nasty stuff. The best you can do is have excellent oral hygiene, suck on lozenges, take in lots of glutamine and rinse rinse rinse your mouth out and always keep it moist. Next time during chemo, I’ll also be sucking on a lot of ice chips.

Last week was funny. Once I left the hospital, I got a rash. Once the rash started to clear up, I got mouth sores. Somewhere in the middle, I needed to go to the ER to get platelets. Then, when the mouth sores went away, all my hair started falling out.

Let’s talk for a minute about the hair thing. I avoided it last year. I thought I could avoid it this year if I buzzed my hair short. No such luck. It really does come out in clumps and clumps. And not just your head – from different parts of your body (use your imagination). I wasted $20 yesterday getting my hair buzzed down short only to spend an hour in the bathroom today buzzing it all the way down. If this doesn’t work (and I don’t think it will), I’ll take a straight razor to my melon.

So let’s look on the bright side, shall we?

I’ve got a week until I have to go back in the hospital. My counts are up. My appetite is good. I’m tired but able to go out for the whole day. My first meal after my WBC went back up was a delicious grilled piece of tuna from Malibu Seafood House. And I sipped the sweetest Coke I’ve ever had in my entire life.

Hells yeah, I can eat again.

I’m going to take a graduate class in the fall and the school is being extraordinarily supportive. I’m looking forward to studying mass media criticism – its been a dream of mine since college. I’ll attend as many classes as I can. And I’ll work hard to keep up and contribute. I know I’ve got a rough few months ahead of me, but its nice to have a goal and a possible new direction in life.

My doctors are knowledgeable, supportive and caring. My friends and family have all been wonderfully patient and sensitive. I met with the nutritionist at the Simms/Mann Center and she helped me develop a new program of supplements an nutrition to keep myself as strong as possible.  My Playstation skills are coming along nicely.

For additional reading, here is a Vanity Fair article by columnist Christopher Hitchens in which he describes his current battle with cancer. It is well written, heartfelt and accurately describes the strange world of being a cancer patient: Topic of Cancer by Christopher Hitchens.

I posted some photos of my experiences from the past couple of weeks on my FlickR page: Me and Mr. Hodgkins, 2010

For now, here are the standard photos of me with a mohawk and me with no hair. Enjoy.

My hair was getting patchy. And falling out in clumps.

The obligatory "Cancer patient cuts his hair into a mohawk" photo.

Stephen meets Bald Stephen for the first time. There is no spoon.

The update where I complain about everything

Oh my.

Let’s start from the end, shall we.

I go to CVS pharmacy today to pick up 2 prescriptions. Tell the lady behind the counter my last name. She repeats it. I repeat it. She looks for prescription. She asks my name. I tell her my first and second name. She repeats it with a question. She looks for prescription. She asks me my name. I hand her my driver’s license. She repeats it. She looks for my prescription. She pulls an envelope. She looks at me says “Steph-an”. I say “Stee-ven”. She says “Steph-an” with a frown. I lean in and say “I’m 35 years old, I think I know how to pronounce my own name.”

Then it takes 5 more minutes to find my next prescription.

Why am I starting with this story? Is this only one particular episode of annoyance or stupidity on the part of one random pharmacist? I wish.

For all of you that have left me messages or sent me emails that I haven’t returned, please remember: I have to deal with something similar to this story about 5 times a day right now. Nurses. Doctors. Pharmacists. Home nurses. Everybody has to hear my story. Everybody has to approve me, change an appointment or confirm something. It is absolutely exhausting. Jen takes on a lot of this, but we share our frustrations. It grows and grows until by the end of the day I want to curl up on the couch with a blanket over my head – not only because I’m exhausted and suffering from chemotherapy, but because dealing with people all day about my healthcare is excruciating. And, it is currently my full time job.

The problem was so serious that I changed oncologists. Not a light decision. The 7 days I spent in the hospital, my oncologist never checked in on me once. Even though we SAW him in the hospital corridor, he never called or dropped by or followed up with me. We spent the entire time trying to juggle the resident M.D. and the floor oncologist (who was a dick). Although UCLA is a great system, it is only as strong as its weakest link. And I think I suffered from a lack of management over my case while I was in the hospital. There are a couple of serious things that were overlooked or mishandled that ended up with me having more pain and spending more time in the hospital than necessary. And, with that, I made a change for the better.

So long, Dr. Klein. You're not so super.

I saw my new oncologist yesterday for the first time. The experience was so warm, so supportive and so thorough that I had tears in my eyes when I thanked everyone in the office. For 7 days, I felt lost, like no one was really taking responsibility for my case. And my new oncologist – and her entire staff – erased that feeling. After a 2 hour appointment, they even called last night to follow up…AND THEN AGAIN THIS MORNING AT 10AM! A huge step in a new direction.

My new oncologist will be referred to as Dr. PB. And as soon as I find an appropriate Muppet or Peanut Butter image on Google, I will post an accompanying photo.

Let’s see…some more things to complain about….

I handled my chemo fairly well while in the hospital. The low BP and fevers was alarming. Followed by nausea and fatigue. Now, I have mouth sores and a sore throat, which is the chemo attacking the poor cells in my mouth. So I’m doing a lot of oral maintenance to stay on top of things. Difficult to eat, but I’m rolling with it. I’m confident that I can take on the next round of chemo as long as I stay on top of some other things.

Like, for example, we found out I’m allergic to a family of antibiotics. I have ‘Red Man Syndrome’. Which, I wish was as cool as Green Man, but alas.

GREENMAN!

I have a rash over my whole body that itches like crazy – an allergic reaction to stuff they gave me in the hospital. Not really anybody’s fault, and I’ll never take those antibiotics again. Lesson learned. And the itching is finally getting better. Although I’ll miss Jen literally pouring Calamine lotion over my body at night. Sexy.

Also, while in the hospital, I developed a blood clot in my arm. It was causing me quite a bit of discomfort. And, even though Jen told the oncologist (the dick one) about it on Sunday, he dismissed us. On Tuesday, they finally gave me an ultrasound and lo and behold! They put me on blood thinners hoping to keep on top of any other blood clots. The problem is, that if they would have to pull my PICC line because of infection or clots, my body doesn’t leave them many options for ways to insert catheters into my bloodstream. It is a real concern…that no one seemed to be particularly worried about until Tuesday WHEN I HAD GOT THE PICC THE PREVIOUS WEDNESDAY AND MY ARM WAS SWELLED UP LIKE A LITTLE BALLOON.

I actually wrote an email to my interventional radiologist who has been with me for over a year – and my 1:30pm email was the first he heard about my PICC problems. No one had paged him. Again – I chalk this up to a lack of proper management by my oncologist.

Oh, and I had a rash on my arm where the plastic dressing was over my PICC. At my new oncologist’s office, they gave me allergy free tape and my arm has less pain, no redness, no itching and the pain has reduced by 90%.

I talked a bit with someone today about pain. I think I have a different view of pain than other people now. For me, there is acceptable pain – pain that leads to me getting better. The mouth sores or the Neupogen bone pain or the nausea. But allergic reactions to antibiotics and gauze are unnecessary pain – and I have no more tolerance for that.

A friend asked me a couple of weeks ago if it hurt when I got my catheter pulled out (this being a urinary catheter after my surgery). My response, and my new mantra is: “Everything hurts”.

With that in mind, I reframed the pain I’m experiencing as being a necessary part of my experience. When I have to get another bone marrow biopsy, I’m not going to enjoy it. But it is a mean’s to an end. And, if my caregivers are sensitive to my pain, then I’m sure I’ll make it out the other side okay.

Whew.

Many thanks to Allen for writing me a message telling me that he found help and inspiration in my blog as he was just diagnosed with a similar condition of Hodgkin’s Disease. I’m writing this for fellow patients and for people to keep up to date on my condition. It was a good reminder of why I go through the trouble.

Last year, I had a flippant attitude about entering treatment. And that strategy completely failed me.

This year I am armed with patience, understanding, priorities and ambition. Along the way, different people earn my trust – my new oncologist, my interventional radiologist, friends and family. But not everybody – I’m thinking of you, pharmacist lady.

(Side note: The pharmacist asked me where my name was from, and when I told her it was Russian/Romanian she said something like “I’m familiar with the name because I’m from Sweden.” I mean – what the hell are you supposed to do with that kind of answer? Mind boggling.)

For everyone who wants to keep in touch or offer some help: I appreciate all of it. I really do. But, for example, right now it hurts to talk and eat. Tomorrow, I might sleep for 6 hours. I have appointments Monday and Tuesday. Things are difficult and busy. And we will really, really tell you if you can do anything for us. I’m planning on hitting up a few people for some free, home cooked meals. There will come a time when I’ll be bored in the hospital again. I’m looking forward to meeting you for a Jamba Juice and catching up soon.

But for now, I’m happy to be home with my beloved wife, catching up on Mad Men and enjoying the fact that I don’t have to answer every phone call or text or email. Although, I am happy to get them all.

Whew.

Much love. I hope this gives you a good idea of where I’m at. I’ll post more about what’s to come.

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.

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.

Bluto

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?

A vacation from my brain

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

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

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

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

Difficulty focusing? Check.

Difficulty multi-tasking? Check.

Periods of fogginess? Check.

Depression and anxiety? Check.

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

Freaks.

Freaks.

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

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

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

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

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

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

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

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

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

Because soon, its back to business.

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.