Tag Archives: port

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 #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.

Any port in the storm

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

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

One third

I am 1/3 of the way there.

4 of 12 chemo treatments done.

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

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

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

See how excited Dr. Klein is!

See how excited Dr. Klein is!

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

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

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

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

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

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

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

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

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

Me - Every other Thursday through Monday

Me - Every other Thursday through Monday

Today I’m having a blue sky day.