Wednesday, October 31, 2012

Day One Complete

Hardest thing from day one? My neck and shoulder are sore from the port placement.  Kind of walking around like lurch with a separated shoulder and a stiff neck, fitting for Halloween. 

The day started out with me sleeping through my 5am "last chance for solid food" alarm.  No big deal but the stomach was definitely making noises.  Had to be down at SCCA at 11:30am so no worries on traffic.  Port placement went as planned and I was awake but sedated for the whole 90 minute procedure.  Got to meet with my medical team one last time before we started the first dose.  I'm really pleased with the team I have up here.  The main doctor is fairly young and definitely an ambitious guy.  He informed me today that he is already working with a surgical team to work on my case when we are done with the chemo.  My nurse has done a great job on making sure we have all the information needed and that I'm comfortable and ready for this journey.  After the consult we went up to the infusion floor.  Unluckily, after arriving the nurse there discovered I was missing a couple labs from my blood work.  With my new port, giving blood takes no time at all but we did have to wait about an hour and a half for results.  Luckily, I get a private room that is spacious enough for a couple visitors, equipped with a TV, and a well stocked snackroom with all kinds of treats and drinks just down the hall.  Mom is with me this week so we sampled some of the snacks while we were waiting.  Turns out the Methotrexate only takes about 5 minutes to administer so once the lab results came in we were pretty much outta there.  All in all about 7 hours at SCCA. 

Back at Richard and Anna's mom and I arrived just in time for a tasty dinner.  Chemo so far is not affecting much of anything, although they did say that was the easy drug.  Nephew Will entertained us all as he showed us his new trick of blowing raspberries, for about 10 minutes.  It was quite funny and I think he is starting to understand he can get a reaction from doing it, especially when he does it with a mouth full of food onto mommy :-)

Tomorrow is going to be long and we get the heavy hitting drugs.  I'm scheduled for a full 10 hours.  Should still be feeling good as they say it sometimes waits a couple days to hit ya.  I'll keep ya posted.

Here we go!

Today we get to fight back!  I've been look forward/dreading this day for nearly a month now but am happy it's here.  I will get a Bard Powerport Duo installed today in my first step to becoming some sort of cyborg.  For those unaware, a port is used in place of sticking me constantly to place an IV.  It is semi permanent and plumbed into a vein and sits right under the skin.  It makes for a reliable connection and guarantee that we don't miss a vein during infusions.  The "power" part means that they can push fluid in faster than regular ports so that it can be used for CT contrast and the "duo" means there are two places to plug in for double the fun!
After the port is in we will put it right to work with my first dose of Methotrexate than we will be done for the day.  Day 2 is the long one, scheduled for 10 hours.  I'll try and update tonight.

Thursday, October 25, 2012

Anticipation

Here we are, less than a week before the first round of chemo.  I'm plowing through my checklists at home and at work, wondering what I'm forgetting as I'm getting to the tail end of things.  My business trips to China have made packing for extended periods of time away from home easier, but I really haven't fixed my procrastination too well so I know what I'm bringing up to Seattle but none of it is packed yet.  Guess that will happen Friday night/Saturday morning.

I finally got more of a cemented schedule for next week and it helps to know that we will start doing something about this problem.  I've been using this week a lot to communicate with friends, family, and co-workers about the situation.  The hardest part is figuring out how to break the news.  I can manage before and after that but there is still an upwelling of emotion tied to saying "I have cancer".  It's markedly different from 2 years ago as well because the stakes are a bit higher.  The community response at work has been great and the team even surprised me today with a gift, cleverly disguised as two reams of paper.  I now have an Asus Transformer tablet to blog on and keep myself company in my hours I will be spending getting chemo, thanks guys!

The plans are in place and so now it is just a matter of time before starting this next chapter in life.

Tuesday, October 23, 2012

Adaptation

So I got the first wrench (probably not the last) thrown into my plans yesterday.  Got a call from the Doc stating that I am not eligible for the OGX-427 study I had chosen after careful contemplation.  The issue was that my most recent BCG treatment was done in the last 3 months.  The frustrating part is that this was known during our consultation last week so I should have not been given the option, seems like the exception was in the fine print.  On the other hand, the clinical trial was in a 50/50 coin toss with a treatment called High Dose Intensity MVAC (HD-MVAC).  With the trial eliminated, the options were really HD-MVAC or straight GC (the two standard drugs used in the trial).  After looking over some studies again (referenced below) I have chosen to go with the HD-MVAC.  This will be a 14-day cycle with drugs given on days 1 and 2.

MVAC vs. HD-MVAC

MVAC vs. GC

Goal: Complete Response
Logic: MVAC = GC for complete response, HD-MVAC > MVAC for complete response, thus HD-MVAC is our champion!

This is considered a standard treatment and not a trial so on the plus side we get to start soon, as in next week, on Halloween!  So do I dress up for my first dose of chemo?

Friday, October 19, 2012

Gloves are off

Less than a month ago I was looking forward to this December as my two year anniversary of being bladder cancer free. A lot can happen in a few weeks. The last I knew, my small stage T1 tumor that was removed back in December of 2010 was the only cancer in my body and we had kept it in check. Regular appointments with my urologist had shown no progression in the bladder and I was doing great. What we didn't know was that some cancerous cells had given us the slip and set up shop in my retrocaval and pericaval lymph nodes. Yep, just went from stage 1 to stage 4 cancer....shitty.

The past few weeks have been a bit of a blur, half from trying to comprehend the situation and the other half of the blitz of testing and consults I have gone through. The support from my Family and Friends has been remarkable and the quickness that the medical team(s) I'm working with is astounding. I have decided that joining a clinical trial is the best shot I've got for kicking this cancer out. It will be 4-6 cycles of 21-day treatments using Cisplatin and Gemcitabine and possibly the trial drug OGX-427 (double blind study, 2/3 chance of receiving it). As a result my treatments will happen in Seattle so I will be temporarily relocating up there.

So yeah, the gloves are off, the cancer isn't playing nice so we're going to give it a heavy dose and see what it has to say about that.

Thanks for all the thoughts and prayers and offers of support so far, they do mean a lot.  Physically I have been feeling good most of the time besides a few episodes of pain (how we found it).  I'm currently waiting for my start date and until then am wrapping things up at work and at home to prepare.