Happy Holidays!!

Hope everyone had a chance to celebrate the holidays with family and friends!  I know I had a great time visiting the Yakima Valley and hanging out with extended family and friends and missed those that were out of town.  The holidays were good to me and with the constant food eating I was able to put some weight back on.  I know plenty of you out there were dreading this inevitability for yourselves but I was looking forward to it after my weight dropped a bit last round.  It only took eating plenty of Cougar Gold cheese, homemade pumpkin pie, steaks, and whatever other goodies were available.  

The chemo treatments are starting to hit me a bit harder and it took me another day to crawl out of my "hole" this last round.  When I was feeling half normal I headed south to visit Vancouver for a few days.  To my luck, some object bouncing down the freeway popped up, skipped across my hood and bashed into the passenger side of the windshield.  I never saw where the object came from and it definitely freaked me out.  There were even small pieces of glass in the cabin of the car.  I didn't need to stop for coffee after that, so much for an uneventful car ride down I-5.  The good people at Progressive did manage to get the car fixed and ready to go as quickly and painless as possible and I can't even tell where the dent was on the hood.

Damage of the object on the windshield with bits of glass on the inside.

Work has a tradition on the last day before the holiday break of having a breakfast potluck and enjoying skits produced by your coworkers making fun of the year of events.  I dropped in on the last day and had a great laugh.  I don't know how they managed to squeeze in time to do them between the trips to China and long hours.  It was good catching up with coworkers and letting them know that I'm making progress.  Of course they are all curious when I will return, as am I.  

Right now the plan is to finish chemo in January and scan again.  Then we will assess the situation for surgery.  I still haven't talked directly with a urologist surgeon but from what I gather they will give me a few weeks off to recover from the chemo then I will go under the knife.  My guess is that the extent of the surgery and recovery will vary widely as to how well this last half of treatment beats up on the cancer.  I'm hoping to be feeling good by the end of February but something tells me that is a bit wishful and March would be more likely.  

Here are a few pictures of the last few weeks of activity:

 

After Vancouver I headed to the Yakima Valley for a white Christmas (yep it snowed).  My nephew got to go sledding down the same hill we enjoyed as kids.  

 

My brother and I tried to be a little artistic in turning mom's glass cake dome into a snow globe, complete with snowmen.  After making a gallons worth of jello, marshmallow snowmen, and a gummy bear Christmas tree (a sticky mess) we ended up with what you see below.  Turns out we didn't dilute the blue jello near enough and the globe was a bit foggy.  Better luck next time I guess.  

The nephew must not have gotten all he wanted for Christmas as he was still looking at magazines.  Or maybe he was getting hungry :-)

Enjoy the holidays!  I plan on being in Seattle to ring in the New Year. Today marked the end of Round 5 drugs so there is only one more Round left!  So far I was feeling well enough today to go see The Hobbit after I rested up with 3 naps :-) it was worth it.

Good News!

Results are back and there was a 30% reduction across the board and no spread of the disease!!  The cancer groundhog saw his shadow so I'm in for six more weeks of chemo.  Hoping to reduce the tumors as much as possible before surgery. 

Anxious

Today I get to find out how the cancer has reacted to the last 6 weeks of treatment.  The CT Scan was on Monday along with blood draw that is normally done today.  My nurse told me over the phone that the lab work from the blood looked stable from last time which is good.  For those who haven't gotten a CT scan before, the scan itself is usually very quick.  I think this one took all of 5 minutes after I laid down on the moving table.  However, if they want contrast in the scan you get to drink a liter of not great tasting fluid over the course of 45 minutes.  For some reason that isn't enough contrast so they also pump it into your vein during the scan which can make you feel uncomfortably warm, like you pissed yourself.  Then while lying on the table you hold your breath as the move you in and out of the giant donut shaped machine. 

My appointment for the results isn't until 4pm today so I get to practice my patience and try to distract myself until then.  Thanks for all the messages of thoughts and prayers.  It is hard to believe it has been nearly two and a half months since I found out of the spread of the cancer.  In some ways it feels like a year ago.  Regardless of time I have been impressed and humbled by the support I have received and so very thankful I haven't had to go through this alone. 

Halfway point?

Round 3 Day 2.  I've noticed my agenda for the past month has constantly revolved around where I am at in my treatment cycle.  It's a little interesting not being able to plan things out more than two weeks in advance with any sort of commitment.  Hopefully this treatment cycle marks the halfway point and there are less than six weeks to go!  Of course we aren't out of the woods after chemo but it is a definite milestone. 

Speaking of milestones, in less than two weeks I get new CT scans to figure out how the cancer has reacted to the chemo treatment.  I am really looking forward to seeing the results but trying not to get too worked up about them.  It would be great to see nothing on the scans but that is highly unlikely.  I feel like we will see good regression of the cancer cells but of course I fear that we may not see any regression and heaven forbid seeing progression of the cancer.  My blood work came back looking very similar to two weeks ago, good but not great (compared to a healthy, not on chemo person) but definitely good enough to continue treatment.  My medical team says I'm doing very well with the treatment regiment, I even put on a pound since the last weigh in! 

Thanksgiving week was great.  I got to spend it surrounded with good friends and family and plenty of good food.  Even my sis Karin flew in from the East coast to spend time with us.  I was lucky it was my off week and so food was appealing (the appetite tanks for a few days after treatment).  We had dinner at my brothers house with about 15 people present and a couple kids crawling around.  For the turkey we fried and smoked another, both were ridiculously good but the smoked one was better.  Probably was the blanket of bacon on it that gave it the edge.  I also tried frying the pumpkin pie (think individual hand pies, not the whole thing).  It worked well when I could keep the pocket of dough stuck together and not leak out the filling, they were tasty.  Next time I think we will try freezing the filling so it won't spill out so easily.  Even with all the craziness going on in life, there is still plenty to be thankful for. 

Well I haven't shaved in 3 days and it doesn't even look like my usual 5 'o clock shadow.  Quite patchy.  The hair loss has mainly been the top of the head and the beard, still have eyelashes and eyebrows but who knows how long that will stick around.  It seems to go fast when it goes.  Not looking forward to hiccups tomorrow, they did happen again after last treatment so it will probably continue.  Once again, better than nausea.

Looks like we are once again ahead of schedule for infusion for today.  This dual port has definitely been a time saver.  Looking forward to heading back to Richard & Anna's house to hang out with the nephew!

Beard Removal

Sorry for the delay in posting these, hope you enjoy the progression. The soul patch I left behind was slowly disappearing so I'm actually completely beardless now.  After this session of beard trimming (a week ago) I hopped in the shower to clean off.  As I was washing the hair on top of my head I noticed quite a bit of it was left in my hands and in the shower drain. As a result I decided that it wasn't worth trying to hold onto.  It now feels much colder outside.

Yep, cue balled it up :-)

Uhoh

My nephew likes to pull on hair and my beard is starting to get to the shaggy stage.  This morning he got a nice handful and gave it a tug.  Usually this causes me to say ouch.  However, this time Will just made off with a chunk of hair and no pain on my side.  Looks like the hair is starting to fall out.  Any requests for beard/goatee/moustache styles for me to try as I proactively shave this thing off?  I'll take some pictures to share on the blog.  Act quickly as I'm not sure how fast I'm losing it yet and at the same time am not too enthused about shedding into my bowl at meal time.

Chemo Casual

Last week I discovered that regular crew neck T-shirts are not great for access to my ports.  So this week I wore a button up shirt for easy access.  However, walking out of the house this morning with my comfy Adidas sweat pants, I must admit the combination is a bit unorthodox.  What do you think?  I also figured I would pose next to my dancing partner, the rolling pole.  It gets to come with me on jaunts to the bathroom and I get to figure out ways to try and tangle myself in the tubes attached to it.

Round 2 Day 2

Sitting here getting my chemo.  It is noon and we are already to the cisplatin, the last drug of the day!  Granted, it does take an hour for this one to drip in and then it's at least another 2 hours of hydration afterwards to clean out my kidneys.  But it is looking like we will be out of here in just over 6 hours, this dual port is paying off!  Otherwise I would be sitting here for 10 hours. 

Mom is with me today.  Instead of Dad bringing her up this time Kendra and I went on a road trip to pick her up.  We took off from Seattle on Sunday to check on my place in the 'couv.  We were in town for less than 24 hours, enough time to grab some dinner with friends Sunday night then go to a doctor appointment Monday morning, and meet up for lunch with a few coworkers.  Next time I'll plan on hanging out longer.  It would be good to sleep in my own bed for more than one night. 

Kendra and I then headed east towards the Yakima Valley.  I decided to take Highway 14 instead of the dull I-84 route which was a good choice.  Fall was definitely in session and although most of the leaves had fallen the colors were still great.  Kendra is lucky that I forgot my camera in Seattle or I would have been tempted to pull over a few times (or I can just enjoy Alvaro's shots).  I did miss the motorcycle on the curvy roads but it was cool and raining so that probably wouldn't have been a good choice. 

On arriving at my parent's place in the Yakima Valley, mom had dinner ready and had invited some family over at the last minute.  It was good to see them and let them know I'm doing well.  I'm pretty lucky to have so much of my family so close together and I love that our way of expressing that we care is by enjoying food (Grandma Golob those brownies were amazing). 

Tuesday we headed over the pass which luckily had warmed up.  It had been closed Sunday night briefly due to the ten inches of snow that fell.  We will definitely need to keep an eye on those conditions in the future as mom will be crossing over often.  It was good Kendra came along as my copilot, even though I was too stubborn to let her drive most of the time :-)

Back in Seattle, we started Round 2 yesterday.  As always, they did some blood work before the doc decides how we continue (adjust dosages, etc.).  My results came back good!  The Neulasta shot is working as my White Blood Cells (WBC) were up.  The only concerning lab was that my platelets have dropped.  They are still in a good range but it would be bad if they drop the same amount again before the next treatment.  Something to keep an eye on.  I also talked with the doc a little about our post chemo plans.  It sounds like they are already starting conversations with surgical teams on how to address my case.  The next scans are planned for December 10th where we will find out how much the tumors have shrunk.  Until then we continue on with the chemo!

Doing Good

Day 4 nearly complete and besides some fatigue and an interesting case of hiccups things are going well.  Friday Mom and I even met Richard downtown for lunch and a little wandering around Pioneer Square.  The hiccups started Friday morning and have been off and on ever since.  The thought is the port is irritating some nerves that control my diaphragm.  The only thing that has been working is a muscle relaxer they prescribed but of course that adds to the sleepiness. Hopefully the nerves chill out soon, hiccuping all day isn't too fun.  Overall though things are going really good :-)

Day 2

(originally written on Thursday Nov. 1)

Alright, we made it to the big drugs today.  So far, no nausea, hooray!!!  Although that could be some early celebration as they piped some potent anti nausea in me before the meds.  Another good thing, my 10 hour day turned out to only be 7 hours thanks to the dual port.  They were able to pump two things at a time so we got out of there much earlier.  All in all, I am definitely feeling slow and fatigued.  The eyelids are heavy and its a good thing I can touch type (this little transformer device is working great).  Mom sat with me through the morning but then Richard took over in the afternoon, it was good to change things up a bit.  I also got presented a most awesome quilt made by my Aunt Chelle with squares filled of family photos outlined in Batman style "Smash" "Pow" "Kick" style pattern.  Pretty sure it gives me special healing powers during the chemo :)

They sent me home with my ports de-accessed (no longer had a needle and tube on the outside) so I finally got to see the scar and bulge.  Decent sized 2" scar just below the collarbone.  There are two prominent bumps and I can feel the line that goes up and over the collarbone. Kinda weird but I'll get used to it.  Glad that they will leave them alone for 12 days as they are pretty tender.

Hope the next few days will be similarly manageable.  I get a shot tomorrow to promote bone marrow growth to keep my white blood cell from dropping too hard but that's it on the agenda.  Short day tomorrow :)

Thanks for the messages, so far I've been able to keep up with just about everyone's questions and it is always great to get updates from my readers :)

Jokes and pictures are especially appreciated. 

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.

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.

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?

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.