Tag Archives: portacath

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.

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.

Words from the big chair #6

Hello again all.

Sorry it takes me more time between blog posts. I find it harder and harder to sit down and organize my thoughts. Between treatments, all I want to do is forget about the next treatment. And writing down my experiencs is a way for me to relive each past treatment or stoke my anxiety about the next one. So, although I want to share my experiences with all of you – please be patient with me.

Treatment #7 went well. I was able to use my portacath for the first time. It still isn’t completely healed due to the stitches, but the nurse worked around it and it was a pleasure not having to get chemo through an IV in my arms.

I still felt nauseaous during the first parts of the process – all nerves. What was once kind of ‘new’ experience or even a little ‘exciting’ is now stressful for me. I know this is means-to-an-end…but just walking into the infusion center causes my stomach to drop. I think it has something to do with the illogical notion that the people who are caring for me are actually making me sicker. Can’t I just take a week of antibiotics and call it a day?

They shot me up with a lot of Benedryl and I slept through the entire infusion – which was the best way to deal with it. I basically slept away most of the weekend. I’m preparing myself that this is going to get harder as it goes along and I have to be mentally prepared to take it easy for the long weekends until I start to feel better after each treatment.

And this weekend was the worst so far – a lot more nausea than I’ve had before. Part of me thinks that I have begun slacking on my nutrition and diet. Two pieces of pizza for dinner on Sunday night was not supportive of having a healthy digestivie system – and I paid the price. My goal for this week is to fill the house with healthy fruits and vegetables and go back to eating plain, nutritious meals in the house.

In the meantime, I try to sleep as much as possible – its the easiest way to pass the time. I’m not much good if I’m feeling sick all day, so I try to nap it off. Its a good thing I was a champion sleeper before my treatments started. I feel like I’ve been preparing my whole life of napping for this very moment. This is my Tour de France of sleeping.

My next milestone is a PET scan in a couple of weeks, after my next treatment. This will tell me how the cancer cells are reacting to the ABVD. In a perfect situation, I could already be in remission and there’s no sign of cancer cells. Otherwise, the cancer could be on the run. Or we could have to adjust treatment if the cancer has stopped reacting so well. The PET scan will tell all.

My health is good overall. My hair is magically still hanging on my head and refuses to go away completely. I am focused on rest, relaxation and recovery for the next couple of months.

5 more treatments. Final chemo on October 1st. I count the days.

Words from the big chair #5

Glass half full. Today was my 6th chemo treatment of 12. I was stoked.

But my excitement got tempered by a bit of an anxiety attack during the chemo. Apparently, I wasn’t the only one feeling a bit anxious today as the doctors and nurses had their hands full talking to other patients about their feelings. It was one big anxious infusion party.

Through this process, my emotions have evolved from limited clarity about life (“Don’t sweat the small stuff”) to aggression (“Let’s beat this thing”) and now to frustration (“5 more damn months of this crap. I’m going crazy.”)

Also, there was definite frustration today about my condition and treatment. My portacath, which was supposed to make things easier, has a minor infection and I couldn’t use it – so back to using an IV in my arm. The pre-meds they were giving me were slightly different than what I usually get — because my doctor never formally changed my prescriptions. He figured that the nurses would just ‘talk to one another’ to give me the right nausea meds and Benedryl. It all worked out in the end, but I had to get upset about the lack of communication…again.

Definitely frustrating and a little emotional.

Round 6 - I need the strength of this guy.

Round 6 - I need the strength of this guy.

So that’s what is going on with me – blah, blah, blah. Halfway through it and still having to fight every step of the way. Its not like I wasn’t told it was going to be this way.

But there is a silver lining around the edges of all this – I am enjoying my photography class. It motivates me to get out of the house and it is nice to have the time to practice thinking creatively. If I can’t work on set, I might as well pursue my own interests and try to build the portfolio.

I thought I’d share a bit of what I’ve been up to. I have one full set on FlickR: http://www.flickr.com/photos/sdickter/sets/72157621207012598/

And here’s one of the Santa Monica Pier to wet your whistle:

A metaphor for my life? Or just a pretty picture? You decide.

A metaphor for my life? Or just a pretty picture? You decide.

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/

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