Wednesday, last day at CCNW

Today I'm getting my last treatment and Cancer Care Northwest in Spokane.  They are closed for the next two days so I will get my last 2 infusions at Sacred Heart Medical Center.  Its sort of bitter sweet because the staff at CCNW is really great and are very friendly.  Not that I will miss sitting in their "Chemotherapy Suite."  Cancer sure does hit anyone and everyone.  I look around and the room and see healthy and strong looking people, young and old.  I've also heard some interesting stories and met some interesting people.  I wish them all well but hope I never have to see any of them again. 

At the moment I'm on 4 different types of anti-nausea medications and while they stop the physical vomitting, they do nothing to make me feel less like I want to vomit.  Really loving this feeling.  Unfortunately my parents are on their way to visit and help out over Christmas but I really don't think I'll be leaving the bed too much over the next 5-6 days.  Hopefully they understand and can enjoy the time with Brynnley and Noelle, I know they will. 

It's so nice to know that I'll have a few weeks recovery while my body cycle the remaining drugs out of my system and then I can get back to normal.  I can't wait to start playing basketball again.  I haven't touched a bball since July.  Then, before we know it we'll get to try our hand on the boat with 2 little ones!  I'm super excited, I think Brynnley will be getting a new wetsuit for her birthday so she can do some more surfing with me.  I don't remember if we ever posted these pictures on Noelle's blog but by the time the water/air was warm enough last year in late July/early August this was the only good opportunity we had to try and she loved it.  I'm definately looking forward to a lot more this next year. 

Lots to be thankful for and lots to look forward to at this point.  I feel a little bad because Noelle's pregnancy has been pushed to the side because of my little mess.  We haven't taken nearly enough pictures of her big beautiful belly to track the growth of this baby girl like we were able to with Brynnley.  But make no mistake I am so excited for this little girl to get here.  The end of a sad, messy time in our life starts over with something as beautiful as a new baby girl.  How cool is that!  She should get here right around the 21st of January if everything goes according to plan.  Just a few more days of hell and we can move forward.  I can't wait!

Cycle #4

Well, this is it, the last week of chemotherapy!!!  I honestly can't believe it is already here.  After the 1st cycle I didn't think I could make it through but now that I'm almost done it feels like it has gone by so fast.  I'm definatly grateful for that.  I know this week is going to be brutal but I'm not worried because my outlook now is so completely different from what it was in the beginning.  I'm so grateful for good friends that help keep me distracted, a loving wife who is always by my side, a great job that I am so looking forward to going back to and the most supportive family in the world (at least from my perspective) !!! 

I know I've been terrible at writing on the blog and I've kept a lot of people in the dark for a few weeks.  My good friend Rob hit the nail on the head in his comment on my last post, I've been feeling good and have been so busy that I've almost forgotten about writing.  My wife sort of scolded me a little bit last night.  She said she's sure people would enjoy reading that I'm doing well and enjoying myself so I should be writing on my good weeks as well as my bad weeks.  I feel bad for not writing but we have been busy getting ready for Christmas and spending time with my girls so I don't feel too bad. 

Over the last 2 weeks I've been trying to enjoy some good family time and have been trying to eat as much yummy food as I can.  For anyone who can go, I'd definatly recommend 5 Guys Burgers and Fries.  We just got one in Spokane and its right across the road from Noelle's work on the South Hill.  Brynnley and I met her there for lunch one day.  Yummy yummy!  I've also been spending a lot of time in my "Man Cave" playing with my Christmas presents.  Building shelves, calibrating speakers, painting and moving furniture around...  It's such a man thing but boy has it been fun. 

Since I will be out of commission this weekend, we decided that Santa was going to come early to our house.  He came yesterday and it was awesome to watch Brynnley get so excited.  She's at a stage where she is starting to really grasp the meanings of some things so we've tried to teach her some of the true meaning of Christmas.  It's pretty cool when she remembers that we are celebrating Christ's birthday before she remembers that Santa is coming to bring her presents.  But, boy did that girl get a lot of new toys!  So much so that she had a little toy meltdown by mid-morning and needed a break.  It was a lot of fun watching her tear through wrapping paper and get excited about everything.  The steak and king crab we had for dinner on our Christmas Eve was a really nice treat as well!

As far as chemotherapy goes, my body is getting sick and tired of these drugs.  While I've felt good overall, I get knocked back to reality when I go in to have my blood checked.  I was in having it checked 3-4 times in the last 2 weeks and I've also had 5 neupogen shots.  I'm borderline neutropenic.  In addition, I've been anemic and my platelets have been low.  It's super fun to walk up the stairs and be so winded that I have to sit down.  The doctors say my bone marrow is tired and taking longer to recover from each treatment.  It also means that I feel the effects of the neupogen even more.  The last two shots where effective in boosting my numbers but holy crap were they miserable.  The hip/back and joint pain was ridiculous and they made me slightly nauseated.  It was not very fun few days.  I've been extremely lucky to not catch a cold or any type of infection so far.  I think even a common cold might land me in the hospital at this point.  We are keeping our fingers crossed.

Thursday 12/2

When I woke up this morning I knew today was going to be one crappy day.  I've been sleeping well but the nausea is starting to catch up to me.  During my chemo session they dose me up with Adovan which allows me to sleep for 2 hours or so and then its time to go home.  I try to stay awake but end up napping in the afternoon as well.  By Thursday, today, its 7pm and I'm ready for bed.  A little more Adovan to help with nausea and let me relax and I'm outty.  Thankfully this week has been better than the previous 2 cycles so it has been tolerable. 

Plus, Christmas came early for me this year!  I've spent almost 2 years planning out and building my home theater room in our basement.  I finished the basement with a bedroom, bathroom and storage room and a perfect spot for an awesome home theater.  This also means that I've had my eye on a specific set of speakers, a subwoofer, a new A/V receiver, projector, blu-ray player, PS3, blah blah blah.... All the man toys that I can handle.  As you can imagine, finishing the basement was no small feat (and it's still not completely finished) and was no small cost.  Then, for me to add all my "man toys" is just begging for a fight with my wifey.  She knows how hard I've worked and how much I wanted this stuff so when Black Friday/Cyber Monday rolled around, she consented to let me get a few things.  Last night I was greeted by the lovely FedEx man AND who some might call Brown Santa (Mr. UPS).  So between last night and this afternoon, I've been trying to stay distracted by setting up my speakers and new A/V receiver.  Man toys are so much fun!!!!  Even if only temporarily, it gives me something to do and keeps my mind occupied.  Yes, its a little frivolous and I know I could do without, but whats the point if you can't live a little.  I'll state it here and now, I'm a dork and I like electronics, yes I'm a geek.  LOL!  My wife and mother-in-law probably think I'm nuts but I think the speakers sound phenomenal and I couldn't be happier so far.  Awe the little joys in life.  Anyways, I can feel the Adovan creeping in so I'm going up to bed.  I can't believe Thanksgiving is past and Christmas is only 3 weeks away.  I could have sworn it was just September.....

Up and down

Day 12 is done, only 8 more days!  I slept pretty good last night until about 430am when all the water and saline in body decided I need to get up.  Unfortunately I couldn't go back to sleep.  I took some pills and forced myself to eat a good breakfast hoping that it wouldn't come back to haunt me later.  By the time I got my chemo session at 9am I was exhausted and feeling a little nauseous so I asked them to give me some IV Adovan.  This is lovely little drug that "relaxes" you and helps with nausea.  I was out for the next 2.5 hours.  After lunch I tried to keep busy to keep my mind off of feeling sick but by 4pm I was exhausted and fell asleep on the couch.  Noelle told me that Brynnley was talking to me trying to wake me up for a few minutes and I wasn't responding so Brynnley was getting scared.  I woke up to her crying because she didn't know what was going on, super sad...  I tried to calm her down and then went upstairs to finish my nap.  I slept until 715pm!  I never take naps, so this day has been quite a wierd day.  I can't say its been a bad day, I've slept through almost all of it.  The extra rest and fluid definatly helps as well.  I just finished a nice small plate of Thanksgiving leftovers that was even better than the real meal, good stuff! Who knows what tomorrow will be like but I'll enjoy a decent day while I can.  The up and down of everyday is really mentally taxing, I have no idea what to expect each day and just pray it is tolerable.  I've officially mounted my picture collage so I'm able to look at each time I come into my office at home.  That thing is awesome!  At 1st I just cried like a little girl because I couldn't believe all the people in the pictures... co-workers, doctors/nurses/techs that I work with, old roomates and college professors, family members I see far too little of, old friends, new friends, basketball teams and people I hardly know. Now I'm able to look at it and it makes smile knowing how many people are thinking of us and are praying for us.  Ask me in 3-4 days and I might have something different to say, but I can say it now.  Thanks again for all your support!

9 days left

Day 11 of my 20 days of chemotherapy is over with so I'm officially over the hump!  It was the 1st time for the nurses to use my port so I was nervous.  They prescribed me some Lidocane gel that I was supposed to rub on the site about an hour before my treatment.  The gel just numbed the area up a little bit so that the needle wouldn't hurt so bad.  Needless to say, I forgot to put the gel on.  Turns out that having a nurse access the port with a larger needle is MUCH LESS painful than having her miss 3-4 IV's in my hand with a tiny little needle.  It was quick and relatively painless.  I had my computer out cruising for some killer Cyber Monday deal (of which there were many) and was feeling relatively good.  I was even able to take a quick nap during the Cisplatin infusion.  BTW, this is the daily regimen when I am getting treatment...

~ 600 cc of saline for hydration = 1 hr
Decadron (steroids) and Anzemet (anit-nausea) = 20 min
~ 251 mg of Etoposide (Chemo drug #1) = 45 min
~ 51 mg of Cisplatin (Chemo drug #2) = 50 min
~ 600 cc of saline = 1 hr

Towards the end of the last saline infustion I started feeling it.  The ache nausiousness that always rears its ugly head.  The crummy thing is that for my 2nd cycle this feeling didnt hit me until Wednesday morning.  I downed almost an entire footlong from Subway and a bag of chips at lunchtime and felt great.  I drove myself home, took a nap, and Noelle's mom fixed a yummy dinner.  As I sat down to eat I realized I had no desire whatsoever to eat anything.  Bummer.  I forced myself to eat some chicken and rice but it was maybe 1/4 of what I would normally eat.  I guess its true that the more chemo you are exposed to, the quicker your body reacts to it.  So, thats that, looking forward to another long week.  It is tolerable though, after tomorrow's session I'll only have 8 days left.  I CAN'T WAIT!!!!!  It sure does make it easier with this little girl around.

I can't wait to meet her little sister.  Sorry for the poor quality but was the best I could pull off with ultrasound pictures.  Enjoy!

 

3rd cycle...

Happy Thanksgiving!!  We had a great week and very, very white Thanksgiving.  Overall we probably had 6-10 inches of snowfall this week and it snowed all day long on Thanksgiving so that was kind of fun.  Almost every day I went out to shovel and found that it had already been done for me.  I'm not sure exactly who was helping but if it was one of you, THANKS!!!  It's been a blessing because between Noelle being ~32 weeks pregnant and chemo Adam, its tough to get out and get it done.  I've done it a few times to try and keep the driveway clean and my back is so sore aftwards that I can't hardly get off the couch.  I have pretty much zero muscle left after almost 3 months of inactivity.  It's very frustrating seeing as how I was in great shape in August/September.  For the past few days I've noticed the driveway was cleaned off with a snowblower.  They were sneaky and I couldn't catch them in the act so I could thank them.  Yesterday, I watched my neighbor dragging his snowblower across the street and snowblowing our drive for us.  Seeing as how I've probably said hi only a handful of times and didn't even know his name, I was pretty shocked and very thankful.  We'll bring them some cookies this week for sure.  Here's a quick video of Brynn playing in the snow while it was only 8-10 degrees outside!  It got down to -4 F one day!  We hadn't planned very well for snow as you can tell by Brynnley's gloves.  They were an old pair of Noelle's gloves and the only ones we could find that day.  She still enjoyed every second. 

Thanksgiving was great!  We had all our favorite turkey day treats as well as the standard turkey, stuffing and potatoes.  I was able to eat almost anything I wanted so I was definatly happy.  I over did it on leftovers one night though, uggghhh.  I start chemo again tomorrow!  I'm actually a little bit anxious.  It's just such a roller coaster of bad days and good days and I don't know what this one will bring.  I can tell my body is physically wearing down so I don't know what to expect from these last two cycles.  The only thing I am looking forward to is getting over the hump of this week.  When this week is over, I will only have 5 days of chemotherapy left and that is something I can look forward to and something I can deal with.  I still feel like there is a long ways to go but I can definatly see a glimmer of light... just out of reach but getting closer.   

On a very positive note, my doctor told me at my last appointment that my tumor markers have been in the normal range since my lung surgery.  I take that as a very good sign.  I've always had a nagging worry that there could be something growing in my brain.  I've never been really worried about it but the thought is there.  They don't typically do brain MRI's unless I am having symptoms, which I never have.  The facts are  that my tumor markers were high when I had 3 tumors but the tumor markers have been normal since those tumors were removed is somewhat comforting.  Only just a little....  He was also talking about post-chemo treatment plans.  I'll go in for another PET/CT scan in early January just to make sure there is nothing else that we need to worry about in the short term.  It's definatly nice to medically look forward to something other than chemotherapy. 

Thankful for a good week

 

Awww, it's finally the good week.  Another week has passed so I guess it's time to blog again....ehh, sorry.  It's very frustrating because I honestly mean to update the blog, and heaven knows I spend enough time sitting on the computer, but I forgot or don't know what to say or blah blah blah.  Moving on....  I'm so thankful that my good week is falling on Thanksgiving.  I'm really excited because in my good weeks, I can eat pretty much anything I want.  I can't wait for all the Thanksgiving goodies!

A few things have happened since my last post.  Last Thursday I had a port placed in my chest.  For chemotherapy patients it means that I can get my chemo drugs, have blood drawn and have contrast injected for CT scans without having to get an IV in my arms.  I should have done it from the beginning but I was being stuborn.  I described the procedure to my mom and she cringed more than a few times so I thought some of you might find it interesting.  It's not a great picture, but here's how it works.  There is diaphram in the center that can be puntured by a special needle.  The drugs are injected just like a regular IV.  They go through the diaphram and into a catheter that is hanging right at the entrance to my heart.  This is a good thing because instead of the drugs working their way through small veins in my arm, they are quickly pushed through my whole blood stream.  Pretty cool little device that will hopefully save some time and headache in starting an IV every day.  The surgery took about 30 minutes and I was home 2 hours later.

Today I met with my oncologist to go over the 2nd cycle.  He answered some of questions and told me that some of the symptoms I was dealing this time around were due to the medications.  Ugghh, a necessary evil I guess.  There are some other things we can try.  When I look back on it, it was really just friday thru monday that were really tough days.  I think I can deal with that for 2 more cycles.  I also found out today that my white cell counts are down again.  Once again I get to do Neupogin shots again.  For the next 2 cycles, I'll get neupogin shots immediately following treatment to make sure that my counts stay high.  It not terrible but not a lot of fun.  If anyone really enjoys bone pain, they have something wrong with them. 

Winter is finally here in Spokane!  There is 2-3 fresh inches on the ground.  Brynnley is just fascinated by the stuff.  Hopefully we can play in it tomorrow or Wednesday and I can take some pictures.  She spent the day today playing with some friends and their 2 pet kittens.  She was so sad to leave when I picked her up :-(   Friends and kitties are so much more fun than daddy.  I'm ok with that :-)  I'm sure thankful to have good friends that we can trust her with when I have all these doctors appointments.  You know who you are, THANKS!!!!!

Long week

It's official, I've turned into a complete and utter emotional wreck.  This has been a really rough week.  Thankfully my dad took the time the come and spend a few days.  I was basically in my bed for the entirety but he got to spend a lot of time with his grandaughter and I know it helped ease the strain from Noelle so we were very, very grateful.  The nausea has been under control but the combination of acid reflux/heartburn and just uneasieness from the drugs has taken a tole.  I haven't slept more than an hour since I think Saturday night.  The doc perscribed my some Ambien for tonight, so I'm really hoping that allows me some rest.  Thats all I want is some unhindered sleep......  The restleness just allows my mind to race and it is not fun. 

Back to the emotional wreck thing... My buddy Jason was trying really hard to get me to fly to Dallas where he would pick me up and go to the A&M/OU game about a week and a half ago.  As much I wanted to, I just wasn't in the state to do it.  Then, in the midst of my brutal week or chemo infusions, I get a package from my buddy Jason.  4 Aggie t-shirt (Adam, Noelle, Brynnley and baby) and two bottles of the great Freebirds death sauce.  I pretty much lost it the second I saw the death sauce, lol. 

Then, my family apparently thinks its really funny to see me cry lately or something.  One of the hardest things about dealing with this, and specificially dealing with chemotherapy, is that I honestly feel completely alone.  I know for a fact that I'm not but sitting in bed for hours on end, with no relief and with nothing that anyone can physically do for you; that can put you in a pretty dark place.  My wife would do absolutely anything to ease my pain and take away anything she could and I know she is always with me.  I don't feel abandonded or anything like that, its just very difficult to describe.  Last night my dad tells me to get on Skype because they have a surprise for me and my mom wants to be on Skype to see when I get it.... great.... 

You all know about the blue wristbands and how cool I think I they are.  Well, my goofy siblings once again..... I say hi to my mom on the computer and my dad walks in with this framed picture.....  I vaguley even remembering getting off the computer because I was so taken by this picture.  I tried to make it as big as possible so hopefully some people can see themselves and realize how cool this is for me.  I know I'm not alone and now I have something to look at to prove it.  I know a lot pictures didn't make it into this collage, but it was all my dad had room for at the moment.  If you don't know see your picture, don't worry, I know you're out there :-) All I can say is thanks

Cycle 2, Day 1

This will be relatively short but I wanted to give a quick update.  I had the neupogen induced bone pain under control with Tylenol so it wasn't a big deal by the weekend, thankfully.  And according to the doctor "I responded beautifully to the shots"  My ANC was up to 1400 which still isn't "normal" but it is very good.  Much better than having it be <500. It was good enough to start treatment today.  Everything went smoothly, I didn't have a reaction to the Etoposide.  I started taking extra anti-nausea medication and extra steroids in the evening as well.  I'll continue that regimen through the weekend so that I hopefully will be able to keep food and water down and I won't end up in the hospital again.  I'm happy that things are going well but these drugs really mess with your mind.  I hate, hate, hate the way they make me feel.  It's kind of hard to describe, slightly nauseous, slight body aches, no energy, food just doesn't taste good, I'm scared to drink very much because of the nausea, blah, blah, blah.  It's really strange, for the most part I feel fine but I can tell something is very off.  I really don't have much to complain about compared to last time so I'm happy. 

We watched the show Community tonight, one of our favorites.  It was amazing to me how much better felt laughing at that stupid show.  For anyone who has watched it, this episode had one scene when Senor Chang was laughing so hard that he "snoughed" milk out of his nose.  He coughed and sneezed at the same time, classic.  I was just rolling watching that part and, thanks to the great DVR, we watched it a few times.  Well, off to bed I go, 14 days of chemo and about 52 more days until this is over!

I'm feelin' it

Today I had my 10 day post chemotherapy appointment with Dr. Njuguna, my Oncologist.  I didn't know this but at day 7-10 is when chemo is affecting your system the most dramatically.  It all has to do with cellular reproduction and growth.  Right at this time patients see the 1st effects of hair loss (ala my bald head) as well as a possibly decreased immune system.  At my doctor appointment they do blood tests to check red blood cells, white bloods and platelets (and a long list of other things).  As far as your immune system goes, the white cells are the most critical.  Well, my white cell count is actually pretty low.  Low enough that it sent the doctor into a bit of a craze.  We talked for a few minutes about how things were going and what the plans were for the next cycle of chemo so that I wouldn't end up in the hospital again.  Everything was relaxed and comfortable.  The next thing I know he looked at me and said "what, you're neutropenic?"  I obviously didn't know what that meant but he was pretty shocked.  5 minutes later I was in the chemotherapy suite getting a shot of the drug Neupogen.  None of the nurses seemed to concerned about it but it seemed a little concerning to me.  I get to go another shot tomorrow then Noelle gets to give me a shot on Saturday and one on Sunday.  Essentially, Neupogen is a powerful drug that stimulates your bone marrow to make more white blood cells.  The chemo is killing them off at such a rate that my bone marrow can't keep up.  What it really means, and why Dr. Njuguna was so concerned, is that 1) I'm at a pretty high risk of infection right now, 2) if my white cells don't come up by Monday then I might have to push chemo back OR (and this will suck if I have to do it) I will have to do my chemotherapy next week as an inpatient in the hospital.  Grrrrrrrr, not cool. 

Oh, by the way, I had my Neupogen injection at around 3pm today.  It's about 8 hours later.  Can you guess what it might feel like to have your bone marrow stimulated?  Bone pain, "yeah right, I'm 29 years old".  Whatever, I feel like a 90 year old.  Most of the pain (its really just discomfort at this point) is in my hips and lower back.  I just kind of hobble around and it is hard to even sit and type.  Yipee.....  My body has go to be hating me right now, like really hating me.  Ah well.  This is going to get really interesting if I have to do the remainder of my treatments as an inpatient.  I am not looking forward to that prospect.  Just counting down the days at this point.  Ups and downs, one day at a time....

Missing Texas

2 days in a row!  I forgot to publish this post so I'm counting it.  Last time I mentioned I had come up with a plan to cure some Texas homesickness.  We've lived in Spokane now for almost 4.5 years and we love it here.  But I have a longing to be home.  As I was growing up I lived in West Jordan until I was 11. South Jordan for 5 years. Oklahoma City for 2.5 years.  Dallas for a year. And College Station for 5.5 years.  I think that I will forever call College Station home.  Most people have fond memories of college and enjoyed their time there, but they are excited to move beyond that point in there life.  A lot of times I feel the same but sometimes I wish I had stayed there.  The time I spent there made me the person that I am.  I went to school there not knowing a single person.  Other than a good engineering program, I didn't know a single thing about A&M.  I lived by myself for a year and a half while I tried to figure out who I was and what I needed to do with myself.  I played basketball 5-6 times a week for almost 5 straight years, went to 2 Intramural National Championship events and made life-long friends because of that.  It was an amazing time for Noelle and I.  I'm so blessed with the job and life that we have now and I hate to even admit this, but I've had pretty strong temptations to just sell everything we own, move back to Texas, get my PhD, become a professor and live in College Station.  It's stupid and I wouldn't do that to my family but its soooo tempting.  I love College Station. 

The really funny thing is how my mind deals with this homesickness.  I know I'll never be able to relive the pick-up basketball games, engineering classes, poker tournaments with friends or stress-free lifestyle.  But, one thing I can do is eat.  I can sit down in Freebirds World Burrito in College Station and have the exact same beautiful experience as I did so many times while in college.  Once or twice a week I ate Freebirds... this magnificently unique, gigantic, perfection of a burrito full of all the greatness that is Texas.  Just thinking about it is leaving me drooling, hungry and aching for home.  I mean seriously, I tried to get Noelle on a plane this Thursday, fly to College Station, eat at our favorite spots, hit the OU vs A&M football game on Saturday and fly home Sunday before my next chemo.  She almost went for it, until she found out it would cost close to $2000 to do it.  I'd still do it, its only money ;) but I like keeping my wife happy more. 

When visiting Texas, and College Station in particular, there are a few staples that you have to hit.  For us, this is the run down....

At least 2 trips to Freebirds (one for the burrito, one for their killer nachos, soooo yummy)
At least 2 trips to Wings N' More (best hot garlic chicken wings you'll ever eat, period)
C and J's Barbeque
Mi Cocina Tex Mex
Koppe Bridge Burger and Fries
Pappadeaux Seafood Kitchen (in Houston but worth every second of the 1.5 hr drive from College Station)

We've tried and tried but just can't reproduce the greatness of Freebirds or Wings N' More at home.  And there is just no way to reproduce good Tex Mex or true Texas BBQ, you just have to be there.  You can't get fresh gulf seafood in the Inland Northwest, not going to happen.  So the only way to get our fix is to physically go to Texas. 

Well, in my drug induced stupor I came up with a way that I can get my fix, if only partially.  I figured out a way to have both Freebirds and Wings every other week!!  We will make one trip to Texas in the Feb-March so that we can hit a few A&M basketball games and one trip in September-October so we can hit an A&M football game.  I need to bring an extra duffel bag style suitcase.  While we are there I will purchase two small styrofoam coolers.  Here is what we need to stock up on...

Wings N' More

A 6 month supply will consist of...
280 HOT GARLIC chicken wings
12 Lg fries
12 Pickle chip orders
12 Lg blue chees sauce side orders


Freebirds

A 6 month supply will consist of...
8 Super Monster burritos with all the good stuff inside
12 Lg sides of their killer queso
2 Bottles of their Bad A** BBQ sauce (truely unique)
1 Bottle of death sauce

Pack each cooler with some dry ice and all the food.  Surround the coolers with new Aggie t-shirts and gear.  Once home, freeze and enjoy as needed.  One week we can enjoy Freebirds and the next week we can enjoy Wings.  It's not quite the same as eating in the restaraunt but close enough for living 2,000 miles away from College Station.  We have a trip planned for hopefully March (my b-day) if we can make everything work.  I'll give it a try and see if it works.  In theory, it's a perfect plan, but you never know.  I'll let you know how it goes.  Well tomorrow, the high is 60 and it will be November 3rd.  I've been feeling so good that I'm going to go play some golf!  I haven't played since July but it will be fun, I'm sure.  Here's to making 3 days in a row tomorrow!

Snip, snip, snip...

Keeping on top of a blog is a very difficult thing to do.  It would seem that with so much going on I would have a lot to write about, but I've found it extremely difficult to motivate myself to write.  Its almost been a week since I've updated the blog yet my goal was to write everyday.  I have a lot of respect for those that maintain regular blog entries that are insightful and interesting.  Once again, I'm going to try to be better.  Maybe I'll be able to string together 2 or maybe even three days in a row this time! 

As a quick update....  My last depressing blog entry saw me writing at 4am in a hospital bed feeling worse than I've probably ever felt in my life.  After two uncomfortable days at home my GI system finally got situated and I've felt essentially normal since then.  I've lost almost all muscle definition and I get tired easily but thats more due to me sitting on the couch for the last 5 weeks with surgery/chemo than anything.  I quit taking all medications on Thursday last week and have felt great since.  I've eaten a completely normal diet which helps me a lot because unfortunately I really love good food :-).  We are very hopeful that the drug regimen I will be on for the 2nd cycle of chemo will be better.  Anything will be better, so we're optimistic.

I was going to talk about my Texas homesickness but its already getting late and I wanted to share what we did tonight instead.  So Texas tomorrow, for sure.

Noelle was at work today so I got to spend the day with my little girly.  She's so much fun, it was an awesome day.  I think her favorite thing to do right now is read books.  She's two and half so reading involves getting every book she owns and flipping through each page and then stacking the books back up.  Its so cute!  It makes me happy and hopeful that she will love learning like her mommy and daddy do.  While I was spending time with her, I started noticing that each time I would run my fingers through my hair, I would come away with 10-15 strands of hair.  I knew that I was going to lose my hair but it gives you a sick feeling in your stomach.  I don't know if its the reality that chemo has once again taken my hair and I will be bald or the fact that there are poisons inside me that are slowly killing my cells.  To be honest, I'm grateful that I'm loosing my hair because that means the chemo is doing its job.  If there are any other little devilish cancer cells floating through my body, the chemo is killing them as well.  At the same time, its a little scary.  When I went through chemo in 2005, I ran my hand through my hair one day and literally came down with an entire handful of hair.  I was really close to getting sick when that happened, it was such a shock.  This time I knew that day was coming so I was a little more prepared.  We went ahead and did away with the rest my hair on our own terms, with clippers, lol.  So here's the pictures.  Noelle wanted to have a little fun halfway through, apparently she digs guys with mohawks, I'm not sure what that is all about ;-)

Pumpkin carving with hair on Halloween. This picture is proof that my daughter stole my eyes...

My new work headshot!

"You're head feels so funny daddy!!"

A big thanks once again to my lovely wife for shaving my head.  It's definitely colder with no hair so this winter should be interesting.  Thanks to Noelle we are already prepared with 3-4 brand new beanies for me to wear so hopefully the cold won't be an issue. 

There's one other thing I need to mention.  Through the this whole process I have been blown away by the support that has been shown to my wife and I.  I honestly don't know how to handle it.  I fumble with words and am dumbfounded with how to show my thanks.  In the last picture, I'm wearing a dark blue elastic wristband thing.  For those of you who don't know or who aren't wearing one, that is my wristband.  By mine, I mean it was made for me.  It says, "UNITED WITH ADAM  PROVERBS 3:5"  My siblings came up with the idea.  I don't know if they remembered or if it was coincidence but that is probably my favorite all time scripture.  "Trust in the LORD with all thine heart; and lean not unto thine own understanding."  There are now well over a thousand of these bracelets and they are all over the place.  From friends in church to people at work to friends of friends across the country to my Biomedical Engineering department at Texas A&M.  I realize it is just an elastic wristband, but I'm so completely blown away with it that I don't even know what to say when I see friends or family wearing them.  It's really hit me pretty hard and gives me a lot of strength.  Thanks Camie and Bret and Drew, you guys are amazing!

So, you see much this little bracelet has affected me, imagine how I've felt watching as my younger brothers Bret and Drew, my brother-in-law Matt, my nephew Ryan and my old room mate John have shaved their heads.  I don't even know how to express the way I feel about that.  I love you guys!  I can be nothing but positive when I know that all these people are standing with me.  They would do absolutely anything for me and I really am seeing that.  Thank you so much to all those who offer comments on my blog, who bring us meals and offer to watch Brynnley and those who silently pray for us.  We feel it all and it lifts us up.  We are so grateful!  

Bad week

So its 3am, Wednesday, Oct 27 and I'm sitting in Deaconess Hospital in the Oncology ward.  Yes, this is my 2nd night here.  I slept for almost 5 hours and have woken up restless in the most uncomfortable bed that was ever invented.  My tailbone is sore from sleeping upright due to the constant acid reflux, thanks Cisplatin.  I had the worst dinner I've ever eaten in my entire life and I just started my 3rd bag of fluids to help rehydrate myself after a horrific weekend.  I LOVE CHEMOTHERAPY!!!!!!

I really need to be careful what I say because, in reality, the technology that has given us these incredibly aweful drugs is also giving me a chance to live a completely normal, cancer free life.  So be it. 

Here's a breakdown of the weekend.  Constant nausea, vomiting and diarrhea.  No food.  Very little water.  The diarrhea was due to the drugs causing so much constipation that I was drinking prescription ex-lax every 2 hours.  I was taking 3 different anti-nausea meds but none was helping.  I felt ok and ate breakfast on Saturday but that was basically the last thing I ate until coming to the hospital.

So, now I'm on about 6 different presciptions including steroids for a few days until the effects of the Cisplatin hopefully wear off.  I was able to eat 3 meals, well if you can call them meals, yesterday and have held everything down.  I'm hoping the doctor will send me home with a better drug regimen in the morning. 

All I can say about the last 4-5 days is that it was absolute hell.  The combination of reflux, constipation, nausea and and exhaustion is something that is just indescribable.  Throw in vomiting and diarrhea and you have the perfect storm.  I've had food poisoning and really bad flu bugs but nothing compares and no one should have to deal with it.  Such is life I guess.  I think mentally and emotionally it was the most difficult.  I was all over the place.  I'm not sure what Noelle thought when I told her that I wasn't doing any more chemotherapy because I couldn't handle it.  Or how she felt when broke down more than once at completely random times.  I think she's only seen me cry maybe 4-5 times in the 12 years we've known each other but I just couldn't help it.  The mental aspect of this disease is something I think I'm going to be dealing with for a long, long time.  I'm as optimistic as they come, ask just about anyone I know, but when I look at Brynnley or my 6 month pregnant wife the thought inevitably creeps in...  What if I might not be there for them in the future... What if I might not see my girls have a family of their own one day...  If that doesn't make any grown man cry, he's not a man and doesn't deserve to have those blessings in his life.  Just my opinion :)  I'm not exactly sure how to deal with those thoughts right now but the only thing to do is move on and and push through.  I've been blessed with an incredible wife who is everything to me and I'll never be able to express that to her.  I have a beautiful little girl that isn't even 2 1/2 yet but is going to be brilliant and do great things in this world.  And I have a little one the way who is going to endure so much before she even gets here that is she has no choice but to be amazing.  And, to top it all off I've got an amazing support system that is behind me in everything and asks for nothing from me.  What else can ask for?

I've shared far too much personal information, I'm on too many drugs and its 4 am.  Maybe I'll be feeling well enough to post something a little more uplifting tomorrow.  Since I haven't been able to eat for 5 days, all I can think about is food, it's a problem.  I have a master plan to solve my food cravings and cure my Texas homesickness.  Maybe I'll post about that tomorrow.  Only 2 months left......  

Days 3 and 4...Hangin in there

It's the co-author, Noelle, again.  At 8:00 tonight Adam made his way to bed!  I think this might be the all-time earliest bedtime that Adam has ever attempted.  Brynnley actually stayed up 30 minutes later than her dad!!  All I can say is at least he is able to sleep and isn't puking.

The last two days have gone pretty well as far as the chemo administration goes.  They are gradually increasing the rate the drug etoposide is administered and his body seems to be handling it a lot better.  No more recurrence of internal burning!  Today they also gave him an additional drug, Adovan.  It is a relaxer, so that his body can relax a little more and is supposed to help with the nausea.  Adam has been on the verge of throwing up for the past 2 or 3 days....constantly.  Being a woman who is now in the middle of her second pregnancy, I have experienced small phases of nauseousness...but NEVER a consistent, all day issue.  I am happy to report that he hasn't vomited yet and we are happy about that, although I can't imagine constant nausea is much better. Adam still has a great attitude amongst all this.  He definatly isn't his normal self, but considering the circumstances he is a tropper...to say the least!  He still finds time and ways to play with Brynnley and he is a wonderful and loving husband. He is ready for tomorrow to be over so that he can have a few weeks away from more chemo, but is nervous for the weekend without IV administered nausea medication.  We feel so blessed that this time around we have multiple anti-nausea medications available to us.  Last time the only thing they gave him was Zofran, and it DIDN'T work for him at all.  It actually seemed to induce vomiting.  So we are are keeping our fingers crossed that between the 3-4 meds he will be able to keep any vomiting to a minimum...or even better that he wont vomit!

We would also like to thank our amazing friends: Sarah Blankenagel, Heather Brower, and Mandi Price for watching Brynn so that I could be with Adam during chemo treatments this week.  We couldnt do it without you and it has been a relief to know that she is taken care of and is having fun playing with you and your kids, kitties, etc.  Asking for help is something that Adam and I don't like doing, so this has been a very humbling experience.  We are so grateful for your willingness to help out!  Thank you also to everyone else for all the prayers and support on our behalf.  We know Heavenly Father is trying to make this as managable as possible because of it. 

Day 2: A much better day

I apologize for not blogging on my 1st official day of chemo and I've got to give thanks once again for a wonderful wife.  She is doing everything she can to make sure I'm comfortable and taking care of myself.  Thankfully she stepped up and filled in for me during a crappy day. 

Today was much better.  It still took nearly 6 hours but they didn't have to infuse Benedryl so felt 100% better.  It was a long boring day but now I can say I only have 18 more treatment days left!  After treatment I met up with my "work family" and did our Christmas pictures.  I've only worked with them for 4 months but they've made me feel very at home.  They wouldn't do pictures without me and didn't want me looking scary and sickly so they planned to squeeze it in today.  It was fun to see everyone and nice to be outside for sure.

I've been feeling more and more nauseous in the evenings but have been diligent about taking my medications. It's pretty funny, I have a special relationship with one particular trash can in our house.  It kind of grosses me out that we even still own the thing.  But it was my best worst friend during my 1st round of chemo and the night I ended up in the ER from undercooked chicken and the night of the worst 12 hour flu bug anyone should ever experience.  Needless to say, this trash can has seen its fair share of bleach.  Like I said, it needed to be thrown out years ago.  But there it sits on my night stand, standing gaurd just in case.  It's worrying me a little bit that I'm already feeling so nauseous because I was hoping to keep my buddy away until at least Saturday or Sunday.  Who knows, gotta drink lots of water, eat right and take my meds and hopefully I'll be fine. 

It's pretty hard to describe the feeling of such powerful toxins in your body.  You know you shouldn't be taking them, you don't want anything to do with them, but you're life could depend on them.  Definatly a love/hate relationship.  Only 18 more days, gotta keep truckin'!

Day 1: Not a great start

I was pretty pumped to get started.  I had my PSP, zune and a book or two ready for my 4-5 hours and then I'd go home.  I was even optimistic enough that I drove myself to my 1st session......hold on, change in author.  This is now Noelle, I will be finishing the blog entry tonight.  So Adam drove himself to his first chemo session, which was today.  The last time he went through chemo, nearly 6 years ago, he wasn't affected too much by the drugs until the second week or so.  He felt confident that he would be able to go to and from chemo today with no problems, go sit for 4 hours or so, come home and keep on truckin'....so NOT the case!!!  I asked him previously if I should take the day off work so I could help him, but he was persistent in telling me to go to work and he would be fine...so I went into work today.  I called him on my lunch hour at 12:30 to find out that he had some kind of reaction to the etoposide (one of the chemo drugs).  It wasn't a normal allergic reaction: no hives, itching, etc.  Adam described the sensation like this.  If you have ever had iodine constrast administered through IV, you would understand the sensation better.  It is a weird warming sensation that slowly radiates throughout your body as the iodine pumps through your veins.  Adam said it was that radiating warm feeling, only 10 TIMES WORSE?!?!?  It wasn't warm...it felt like his insides were burning.  That is totally freaky!  The feeling started no more than 10 seconds after the etoposide started through his IV.  The sensation started in his chest and went quickly to his head, causing his neck and face to be extremely flushed and red.  He immediatly told the nurse what was going on and they started him on Benadryl...a large dose of Benadryl.  After flushing his IV with saline, steriods, and the Benadryl, they would be attempt to administer the etoposide again....this time at a much slower rate.  After finding all this out on the phone with Adam, I was a little freaked out, but I'm sure he was more scared than I was....I can't imagine what that must have felt like to go through.  He has had etoposide before (6 years ago), so why did his body take it so poorly today?  We still dont know the answer for sure.  I hurried and got some lunch then went back to work to use the phone (since I accidentally left my cell at home!!), to check on Adam.  I called Adam on his cell phone( just 30 minutes after I got off the phone with him)...but no answer.  I called again 5 minutes later, and again no answer.  Then I started to get really worried.  I got in the phone book to track down the office number and got transfered to the chemo area.  I asked the nurse if everything was ok with him, he wasn't answering his cell.  She reported that he was sleeping.  After such a massive dose of Benadryl the poor guy couldn't keep his eyes open.  She then told me they had started the etoposide again at a slower rate and that he was doing just fine, and that he wouldn't be done for another 2 or 2.5 hours.  I was able to leave work early and headed up to his Dr.'s office.  When I got there Adam was awake, but pretty drowsy.  He finished up the IV of cysplatin and another of saline and he was done for the day.  The 4.5 hours of chemo quickly turned into full 8 hour day, POOR GUY!  The nurse attempted to explain possible causes of his adverse reaction, here are the possibilities: 1) He had an allergic reaction the meds.  2) The bag with the etoposide in it might have not gotten shaken enough when they started the IV, so there could have been a higher concentration of the drug at the bottom.  3)  They put the drugs in too quickly, basically shocking his body with an overdose of the med.  They are suspecting #3 is what happened, but can't be fore sure until they try it again tomorrow.  They will start him without any Benadryl and will slow the IV rate down....and keep our fingers crossed!  We will update you on how that goes tomorrow.

As for this evening...again, not great.  Brynnley woke up singing, talking, and wanting to play.  Normally that is fine and no big deal, but Adam wasnt feeling very well.  I was trying to get Brynnley fed, get Adam some fluids and food, and trying to do the dishes...but it didn't go very well.  Brynnley just wanted to talk and sing at the top of her lungs and would not use her "inside" voice.  Adam was being very patient, but I could tell he felt horrible, was exhausted, and am sure the noise was bothering him.  After trying to distract Brynn for awhile, she and I went to the store with our friend, Sharee.  Then we had to drive back downtown to get the car Adam drove this morning.  Since he was so druged up on Benadryl this afternoon, he couldn't drive the car back home.  Once we got home again, I got Brynn ready and off to bed!!  As you have read, Adam didn't get very far in his blog entry.  He is so tired, nauseous, and was ready for bed at 9:15.  If you know Adam, you know he is a night owl!  So when he came to me at 9:15 to see if I could finish his blog, I knew he felt like "a big, greasy turd" (one of Adam's favorite sayings...hahahaha!). 

I apologize I am not the creative author Adam is, but I guess it is better than nothing.  I hope he does better tomorrow!  It is so hard to watch someone you love so much, who is normally so active, fun, and lively, sit on the couch for 5 hours straight and feel so awful.  I wish I could take some of the discomfort away from him.  He has been through so much in 4 short weeks and totally doesn't deserve this.  One thing is for sure, I admire his strength and positive attitude through all this. I know he is a fighter and will get through this.  This might be a long road, but we are hoping for the best.  Hopefully he will be able to put his own words on this blog soon!

Chemo

I haven't been doing very well on updating my blog have I?  No, sorry about that.  My only excuse is that I've been feeling good enough to do some little projects around the house so I've been busy.  It's not a great excuse but here I am now.  I was also waiting to talk to my Oncologist about our next steps before I did another update.  That was yesterday, so here's the update. 

We met with Dr. Njuguna yesterday and went over everything from the beginning.  The pathologies of the tumors, the CT and PET scans, lab work, etc, etc, etc. 

The tumors in my lung were both 100% Embryonal Carcinoma (EC), which is the testicular cancer that had metastasized to my lung.  We had kind of assumed and hoped for this.  Since my abdomen and lymph nodes were all clear, I had worried "what if this is another type of cancer?  Why did it go straight to my lung?"  The answer is that the tumor cells got into my blood stream and the 1st place your blood slows down long enough for them to attach to something is in your lung.  EC tumors respond very, very well to chemotherapy so in a way that was a relief.  Given that I had testicular cancer metastasized to my lung diagnoses me with Stage III testicular cancer.  Assigning a stage really means nothing new to us but is a little bit scary because it is the highest classification given.

The lab work from my lung surgery showed that my tumor markers had dropped significantly.  One of the markers, called AFP, is normally 6 but will typically have a number > 1000 in people with metastatic disease.  My AFP before the 1st surgery was 146 and my AFP the day before my lung surgery was only 18.  I had more blood work done yesterday and hopefully it will be close to normal.  We find out on Monday.  Normal tumor marker levels in your blood give you a better prognosis.  Even though I'm a Stage III, I have very good risk markers.  It's really a bunch of medical jargon that allows doctors to understand progression of the disease and discuss treatments having more information.  I think its interesting but in the end it comes down to my body and the chemo fighting it off.  Stage I with excellent risk markers or Stage III with poor risk markers, you have to fight. 

On to treatment.  The standard for testicular cancer chemotherapy is a combination of drugs called BEP.  Bleomycin, Etoposide and Cisplatin.  You do 3 cycles of these drugs so we call it 3xBEP.  Cisplatin is the most effective drug against EC and is really nasty stuff.  The Bleo is given in the smallest amount but is the most dangerous drug.  It has traumatic effects on your lungs and actually causes death in 1% of patients.  Very scary stuff.  Approx 25% of patients will experience decreased lung function. 

The treatment I will be on is 4xEP.  Four cycles of Etoposide and Cisplatin but no Bleomycin.  I was very happy to hear that Dr. Njuguna had been in contact with Dr. Einhorn at IUPUI.  He is one of the international experts on testicular cancer.  They discussed my case and in his opinion, the recurrence of my cancer is a separate cancer not related to the cancer in 2004.  He recommended a treatment plan that doesn't include Bleomycin and that's what we are going with.  Studies have shown that 4xEP is equivalent to 3xBEP but you lose the lung toxicity. I'm all for that because I have a master plan to take down Hoopfest next year!  2011 is going to be a great year, I'm really looking forward to that.

By the way, one cycle consists of a 3 week period.  Week 1 I get the drugs 4-5 hours a day, everyday.  Week 2 and week 3 are rest weeks.  Essentially I get 4 full weeks of chemotherapy spread over a 3 month period.

I start chemotherapy on Monday.  Yes, Monday the 18th.  Dr. Njuguna was happy with the healing of my incisions and I've got a lot of energy right now so Monday it is.  But starting now will mean that the holiday season might be a little tumultuous.  My 3rd cycle starts the week after Thanksgiving and my last day of chemotherapy will be Christmas Eve day.  Not ideal, but we are excited to get it over with.

That's the plan.  We are jumping headfirst and hoping that 4 different anti-nausea medications will help me though.  It's nasty, nasty stuff.  The 1st cycle wasn't terrible the last time but I did lose my hair about 2 weeks in.  The 2nd cycle was the worst so I'm trying to prepare myself for that plus 2 more full cycles.  Essentially from Thanksgiving to Christmas is going to be really rough but I know we'll make though just fine.  During chemo I'm going to try and be diligent in updating the blog every day.  I'll try to get Noelle to give her feedback as well so you get the perspective of the both of us.  I feel so bad that Noelle is having to deal with all this stress while being 5 months pregnant.  I really hope that baby isn't suffering at all for it.  Noelle is doing a great job taking care of herself and she is such a cute little pregnant girl :-)  This baby is such a blessing, as is Brynnley.  I can't be more thankful for the blessings I'm able to enjoy. 

One of the things that chemo effects is your GI system.  You can't anything good, no greasy burgers, no spicy mexican food and no Wing Stop!  It's a shame, but we are heading there for lunch today so I can get my fix before we start on Monday.  Thankfully its a nice day today and it will be a good time to make a trip to Coeur d'Alene.  I'm excited!

Noisy geese and chest tubes...

I have to apologize for not posting anything the last few days.  Here's a quick synopsis of what I've been up to the last few days.  I've been sitting on the couch trying to breath normally again.  That's about it.  On Saturday morning we went and picked pumpkins in Green Bluff, it was actually pretty fun.  Brynnley loved the geese and we got some great pumpkins, 133 lbs worth to be exact :-)

"They're so noisy daddy!"

Pumpkin rides with the Grandmas

On the gorey details, as promised...

I was really worried about surgery but felt confident that the doctor would get the job done.  He did, and we were grateful to know that things played out the best that they could have.  It made for one long day for Noelle and especially my mom.  We were called by the hospital at 6:00am and told to be there early because my OR time could possibly move up.  We arrived at 7:30am, I was prepped and my mom and Noelle were brought back into wait with me.  At 1:20pm I was wheeled back for surgery.  Noelle had been strong for nearly 2 weeks but lost it as they came in to take me away.  I did my best to make sure she knew everything would be fine, but I also couldn't blame her.  It was strange for me because I had been extremely anxious at around 9:00am but after waiting for close to six hours, I was just ready to get it done.  Plus, the nurse anesthetist had already given me something to calm me down, that might have helped.  The only thing I remember from the OR was sliding myself onto the table, them strapping down my left arm and maybe 3 breaths through the oxygen mask.  Those drugs are amazing! 

The next thing I knew, I couldn't see straight and my back was aching and I was already in my room.  The surgery itself only took about 45 minutes!  Noelle was in shock that they were done so quick.  The doctor had to make 4 "poke holes" in between my ribs, through the muscle and through my chest wall.  He was able to quickly locate both lesions and remove them.  The best part was that the lesion in my chest was actually completely contained within my lung!  This was the best thing we could have hoped for.  He didn't have to try and resect the azygous vein or worry about my trachea, esophagus or heart!  We couldn't have been more grateful.  It also meant no major incision, no ribs spreading devices from hades and a much quicker recovery time.  It was great news to say the least.

What wasn't great was the chest tube they had to leave in.  It was a 1/2" diameter, 8 inch long plastic tube inserted into one of the poke holes in my chest.  It was connect to a suction device and had to remain there until my chest cavity was clear or fluid and air.  It was probably the most excruciating 24 hours I've ever had to deal with.  I was on a Dilaudid pain pump (which is roughly 5 times stronger than morphine).  It allows you to administer pain medication to yourself as you need it.  You can only push the button once every 8 minutes.  Let me tell you, during the time when I wasn't sleeping (which was a lot of the time), I was counting down the seconds until I could push that little button again.  It was unbelievable.  I didn't watch TV, read a book, play PSP, nothing.... All I could do was focus on getting enough air to stay comfortable and wait for that 8 minute clock to countdown.  About 3 times I experienced lung spasms.  I don't know if that was what they were, but that's what it felt like.  My entire right side felt like it was spasming uncontrollably and forcing the air out of my lung.  It was everything I could do to not pass out.  I just had to grip the side of the bed, focus on getting air into my lungs and wait it out.  If I wasn't also focusing on holding my tongue, I know I could have made a number of nurses cry, I'm sure of it but I was a good boy :-)  Never experienced anything like it. 

I felt terrible because my mom stayed with me all night with the chest tube and pain pump and all that nastiness.  I know I yelled at her at least once to get out of the room when my chest was spasming like crazy.  I don't think she probably got a wink of sleep.  All I can remember is fumbling around for the pain pump and begging for some sips of water.  What we will do for our kids, eh?  Love ya mom! 

Thankfully my chest x-rays were clear by 2pm on Wednesday and they were able to remove it.  After removing the catheter that allowed me to pee into bag for a day (which is a lovely experience by the way), I was done with the pain pump by that evening and walking out the door by 9am the next morning.  No joke, once that blasted chest tube was out, I was good to go. 

I'm sure glad to be in the comfort of home but being a big, muscular guy has its drawbacks with this type of surgery.  4 poke holes through your chest wall is not a comfortable thing.  I've only been able to sleep sitting up and only for 2-4 hours at a time.  I can't wait for the day I can sleep on my side or my stomach.  I'm too stubborn to take the pain pills they perscibed because I hate the side effects.  It's getting better each day but in general I'm exhausted.  I'm slightly limited in movement but I can finally put Brynnley to bed again.  She had a rough few days with daddy in the hospital.  She loves for me to put her to bed at night and I haven't been able to do that much since my 1st surgery three weeks ago.  I've got to say I miss it too.  She's such a sweetheart, can they please stay like this forever?  I scolded her today for throwing a temper tantrum for no reason whatsoever.  She is still a 2 yr old but I know she understands so I try my best to talk her through things like that.  Sometimes she gets time-out, sometimes she understands and moves on.  Then, tonight as I put her in bed, she says "I love you daddy, I'm sorry for yelling at you today."  If that doesn't melt your heart, you probably don't have one.  I'm just puddy in her hands..... Will she still let daddy tuck her in to bed in 10 years when she's almost 13?  I didn't think so.... 

Home already

I understand that it might have been a stressful few days for some of you while I was in the hospital and haven't been able to blog about surgery.  Surgery was Tuesday and was a success.  The 1st 24 hours were extremely uncomfortable but I had some dramatic improvements since then.  I just wanted to let you all know that.  I'll give a full account with some gorey details either later tonight or tomorrow.  Thanks once again for all your continued love and support.  I know that it was because of you and because of our faith that things would go well that Dr. Nisco was finished in 45 minutes!!  I feel so blessed to have him as a doctor and to have been taken care of so well.  More later....

Surgery is a go

It's official, we're doing surgery on Tuesday at 1130.  We had a very informative meeting with Dr. Nisco.  Here's what we found out. 

Just as a recap... going into the consult we knew there was a nodule in my lower right lung that is roughly 1cm in diameter.  It is not very active but still there.  There is also a lymph node near my trachea that is very active.  I'll call it the mediastinal or MS node for now, it is the primary concern for us.

Dr. Nisco is a very nice man and very professional.  He came in and had us briefly recap what we had gone through already to make sure he wasn't missing anything.  Then, knowing that I'd understand the images, he invited us into his office so that we could look at the scans.  What we found out was pretty frustrating.  We were initially informed that the MS node was too small to be seen on the 1st CT scan but that it was noticed on the PET scan.  According to both Dr. Nisco and my inexperienced eye, the 1st CT was blatantly misread.  The MS node is not small, in fact its quite a bit larger than the node in my lower right lung.  Frustrating that 2 of my doctors misread the CT but now grateful for the node in my lower right lung.  Without it, they wouldn't have ordered the PET scan and wouldn't have seen the MS node.  Scary stuff.  The MS node lit up like a light bulb, almost off the chart on the PET scan scale.  I've had over 7 doctors look at the PET scan.  Not one of them has ever seen anything light up that strong that wasn't cancer.  It's somewhat disheartening because some hope was still there that this could just be an anomaly.  No such luck yet, but we'll have to wait to get the pathology report to know for sure.

In Dr. Nisco's opinion, or maybe his hope, the MS node is actually another node in my right lung.  This is the best thing we can hope for at the moment.  If it is contained within my right lung it means that the metastasis is likely contained only in the right side and it also means that it will be much, much easier to cut out.  If the tumor is a lymph node, it is sitting directly on top of a large vein called the azygous vein.  Until they get into surgery, he won't know if its inside the lung or on the vein.  Then, if it is on the vein, he has to determine if it sitting on top of the vein, stuck to the vein or growing into the vein.  As you can imagine, if its growing into the vein, things get a little more tricky.  Since its a vein and not an artery, it will be easier to stop the bleeding if it is punctured, which is definitely a good thing. 

Dr. Nisco's plan is to perform a thoracoscopy.  This procedure will require 3 small incisions and will allow him to access my right lung and the MS node area using scopes.  It'll still means I get a chest tube and will spend 2-3 nights in the hospital.  But after a few weeks I should be back to relatively normal activity.

If he can't access the MS node with his scopes or if he believes the tumor has grown into the azygos vein, he will have to remove a section of the vein (he claims this is not a very big deal and that the body will heal around it if necessary, which is amazing to me).  In that case, he may have to do a thoracotomy which involves a 4-5 inch incision on my right side and a nasty rib spreader.  Makes me cringe just thinking about it.  Not looking forward to waking up to that but I told him to do whatever he has to in order to get this crap out of me!  That would mean probably 4-5 days in the hospital and a much longer recovery time.  We are praying he doesn't need to go that route.

We are nervous but ready.  I feel that Dr. Nisco is the man for the job and that he will do an amazing job.  He is an expert with the scopes and I feel lucky to live in Spokane and have access to such a good doctor.  The best case scenario for us is that the MS node is contained within the right lung and that the thoracoscopy will be a success in completely removing the 2 nodules.  We have faith that everything will go well and that I can get these cancer cells out of my body.  I can't stress enough how lucky we feel to have friends, family, co-workers, casual acquaintances and strangers from around the world (yes, the world!!) voicing their faith and prayers in our behalf.  We are completely blown away by it and very touched.  Thank you for your love and support!! 

Conference on the couch

The conference talks today were good.  It was a nice relaxing day with the family.  It's always nice to be able to go to church on your living room couch in your pajamas.  We are really looking forward to hopefully learning more tomorrow.  Not much else to say unfortunately.  I think I've worried enough and thought enough about what might happen, now we get to learn more about what is going to happen.  Look for more information tomorrow night.

Lazy day

It's October and it was 80 degrees with blue skies and no wind, I can't believe I wasn't out on the lake.  On any normal fall day like this, if we weren't out at the lake I'd be making Noelle mad because I would be pouting.  Somehow she tolerates me.  Today my father-in-law helped me to finish winterizing the boat.  It's a sad sad day for me every year when that day comes around.  For some reason I wasn't bothered by it though.  It was actually nice to spend a lazy day milling around the house, watching a little football, winterizing the boat and enjoying the nice weather. 

Brynnley is absolutely loving having her grandma and grandpa around.  It's fun to see her so happy and oblivious to the mess going on around her.  She asks if daddy's owy is ok almost everyday and is very happy to hear that it is getting better.  Thankfully I can now do more than sit on the couch.  I'm pretty much back to full mobility and can at least help with Brynnley.  I know everyone wants to help but I hated being a burden after surgery.  It's so funny to me how reluctant I am to ask for help.  There has got to be a major chemical imbalance in men that just will not allow us to ask for help.  Stuborn stuborn stuborn.  Thats a very common trait in my family so I guess I'll blaim it on them :-) 

Tonight I had a great date night with Noelle.  All we did was stroll around the mall downtown and grab some really great food at Clinkerdaggers (which I would definately recommend although its a little pricy).  But it was a lot of fun and I had a great time hanging out with my sweetheart.  We didn't really talk a lot about surgery or chemo or all that but it came up a few times.  It was nice to not have it constantly on my mind, even if only for a little while. 

I'm definately leaning towards surgery as the best option for now.  The more information I gather from the internet and the more stories I read online, the more optomistic I become.  What did we ever do without the internet??  It kind of just boggles my mind.  We didn't even have a computer in our house until 12 years ago, how did we even survive?  :-)  If any of you are interested, these are some of the websites I've been visiting.  There are some great stories, sad stories and a lot of great information. 

The Testicular Cancer Resource Center http://tcrc.acor.org/

TC Cancer.com  http://www.tc-cancer.com/  

Only 34 hours and 22 minutes until my consult with the surgeon.  But who's counting?

Where we are now

Today was definately a good day.  We spent the day on our friends awesome Mastercraft on Lake CDA.  It was pretty amazing, it was 75 degrees, no wind and almost no one on the lake.  That just doesn't happen on the most well known lake in the northwest.  I was just happy to be outside on such a gorgeous day, it didn't bother me at all that I couldn't get in the water or do something I love to do.  Afterwards we hit up the greatness that is Wing Stop for an awesome lunch of friend chicken wings and fries.  Soooo gooood! 

I'm tired of waiting for things to happen.  Just plain sick and tired of it.  The 1st time around (in Texas in 2004) I met the doc on Monday, ultrasound on Tuesday, surgery on Wednesday.  There was nothing else to worry about because you have to heal before you can start chemotherapy.  2 cycles of chemo and I was done.  Three months after that I was skipping out on my wifes graduation to play in the National Basketball Intramural championship in Disneyworld.  I know, I know, even though I had permission, I will NEVER live that one down.  It was tough, but I sort of felt like I just breezed through.  This time it just feels like I have too much time to sit back and think about things.  It's really difficult to keep bad thoughts out of mind when you have that much time. 

Given that my lymph node spot is extremely active, the doctors believe I have to have it biopsied to make sure that it isn't cancer.  There is a possiblity that it may not be but the activity level on the PET scan was high enough to suspect that my testicular cancer may have metastasized to that lymph node.  I was referred to a heart surgeon in order to biopsy the area.  That surgeon referred me to one of his partners because his partner will be able to remove the spot in my right lung and biopsy (and remove if possible) the lymph node during the same procedure.  He is an expert at performing these types of procedures laproscopically.  This means it will be a minimally invasive as possible.  I'll have a smaller incision and a quicker recovery time...hopefully.  I have the consult with him on Monday and the surgery is scheduled for Tuesday. 

I've been thinking about this surgery for over a week now.  I'm extremely confused and really looking forward to meeting with the surgeon, Dr. Nisco, on Monday.  I'm confused because I want to make sure that in having surgery I'm not taking an unnecessary risk.  But at the same time, if I choose not to have surgery am I risking finding more tumors down the road?  Even though we know so much already, there is still so much that is unknown.  It's extremely frustrating......  Taking a chunk out of my lung is not exactly minor surgery.  Nor is navigating a scope in between my trachea, esophogus, left atrium and aorta in order to find a lymph node that may be smaller than 5-6 millimeters.  It's just not a fun place to be in right now.  Should we do chemotherapy and see if the spots go away or do we try and remove them with surgery and then do chemotherapy.  Ugggghhhh.....

In reality, I keep trying to tell myself that I'm very lucky.  I can't tell you how many stories I've read online of people who are so much worse off than I might be.  One kid had a tumor wrapped around his trachea and was borderline dead because his airway was rapidly being closed off.  Emergency surgery and lots of chemotherapy and he was in remission.  Another person had a tumor in his chest that was larger than his heart.  They did 4 cycles of chemo first to shrink it, then removed what was left.  Absolutely amazing stories and here I am worried about 2 spots that are both smaller than 1cm in diameter.  The unknown is just driving me mad.  Should I worry this much?  Should I be really happy that it looks like we caught things early on?  So much of this disease is mental, it just amazes me.  I have to keep my head on straight and keep the right perspective.  Otherwise, I can easily see myself spiraling downwards.  Don't worry, I'm not going to let that happen.  I know my family and friends won't let that happen either, so I'm not worried.  Wrestling with those emotions and trying to fight off the frustration of the unknown is my primary goal right now.  After a good day like today, I know I'm doing well.  Hopefully tomorrow will be even better. :-)

Surgery and PET/CT results

Okie dokie. We had Noelle's parents come in town today to help out and make life easier for the both of us.  It's good to have family here and fun to talk about things other than surgery or cancer.  Typically its the very end of the season for wakeboarding but the best time to ride.  The weather has been consistantly in the 80s and sunny, which is very unusual up here, and has been tormenting me since the day I had surgery 10 days ago.  I offered my services as camera man while some friends rode on Wednesday and we'll get to hang out on Lake Coeur d'Alene tomorrow.  It's nice to be occupied with something fun for a few days.

Surgery was a success.  I figured I will give a brief description of surgery just so those who don't know can learn more about it.  Its called a Radical Orchiectomy and involves approximately a 3" incision in my lower abdomen.  From that incision the spermatic cord is cut and the entire testicle is removed completely intact.  That way, there is no way for tumor cells to be left behind.  They can't do a biopsy of a testicular tumor and they can't cut a testicular tumor out.  Everything comes out.  Yes, I've lived with one boy for 6 years and now the boys are gone forever :( 

I'm still not sure exactely what to think or how to feel about this at the moment but in reality I'm not that upset.  Having a wife who couldn't care less and loves me for me is the biggest reason for that.  Love you sweetie!  I will have 2 absolutely gorgeous little girls and will likely have more in the future, thanks sperm bank in Tomball, TX!!!  I will never have to endure the pain of getting "racked" ever again!  Take that all you guys out there....  And go ahead and try to laugh and make fun of me for having no balls (even though I know you wouldn't), I'm still bigger than you and I can still do backflips on a wakeboard... Can you do that?

The pathology report told us what we had feared, that I once again had malignant tumors growing in my testicle.  For those interested, there are two types of tumor: seminoma and non-seminoma.  Seminoma's are essentially benign and are 100% curable.  My tumor was a non-seminoma mixed germ cell tumor.  That means there were at least 3 different cell types: 40% Embryonal Carcinoma, 30% yolk sac tumor and 30% Teratoma.  The primary concern is the Embryonal Carcinoma.  Thankfully, chemotherapy is extremely effective against all these cell types.  All of the tumor was contained within the testicle itself, no tumor on the epidimus and no tumor on cord (which is good). 

The day after my surgery I went in for the PET/CT scan.  This is really cool technology, I love this stuff.  They injected me with radioactive isotopes attached to sugar molecules.  The sugar molecules and the radioactivity will be highest in your brain, your heart and in cancer cells.  Even at rest, cancer cells are burning through energy (sugar) at a very high rate.  So, you then scan the body for radioactivity and match that picture up with a CT image taken at exactely the same time and you see if you have cancer cells. Very cool.  What's not cool is trying to lay perfectly still for 30 minutes on a flat board with my arms above my head while they did the scan.

The good news... The 1cm spot in my lower right lung is active but only marginally.  It could be cancer but its not definately cancer.  The only way to tell is to have surgery to either biopsy or extract it from my lung.  Then they can do a pathology report and see what it is.  Also, there was no activity whatsoever in any lymph node in my abdomen or pelvis.  Typically if the cancer has metastasized it will go to these lymph nodes 1st and they will be inflammed or have tumors.  I'm clean there.

The bad news... The PET/CT reveiled a lymph node in my chest with a possible tumor.  The area showed up as extremely active on the scan meaning it is highly likely cancer.  This one gets a little tricky.  The trachea is the light blue Y-shaped object with black stripes in the picture below. The lymph node in question is #7 on the left side image (image from  http://radiographics.rsna.org/content/29/2/403/F21.large.jpg ).
As you can see, the node is in a pretty tricky area.  Directly behind my heart.  Directly in front of my esophegeous and directly below my trachea. 



We were presented with a few options.  All involve surgery with the Cardiothoracic surgeon.  I'll talk more about that tomorrow. 

I don't really know how to describe what I'm thinking or how I'm doing.  My mom's probably sick of hearing, I'm fine, but I don't know what else to say cause I'm fine.  I'm more nervous about the next few weeks and months than I ever have been about anything.  But, it's a strange sort of nervousness where I'm driven to learn as much as I can about it.  I wish I would have grown a pair and put myself through medical school.  Lol, sorry, it was the 1st that popped into my head.  I need to stop that.  I've spent a lot of time searching the web and trying to learn more about what I need to have done and what is happening inside my body.  I'm scared of the surgery that I will have to have but I would have done it a week ago if I had the choice.  I want this crap out of me, whatever it is. I'm excited about the future, I'm excited to fight against whatever this is and I'm excited to move on.

I should be caught up tomorrow, I hope....

Step 1

About 3 weeks ago I scheduled an appointment to see my Oncologist so that I could get my 5 year CT scan.  This is usually the last one and if it comes back clean, you are said to be in full remission of cancer.  I was about 3 months over due so I relented to Noelle's "reminders" and got the appointment to see Dr. Njuguna.  For some reason I was hesitant to get this last CT scan.  I'm not sure why, but I finally gave in.  Did you know that if you are one of the lucky 0.4% of people to have testicular cancer, you have a 2% chance of having cancer in the other testicle at some point in your life?  If my math is right, that means a random person has a 1 in 12,500 or 0.008% of joining the 2X club.  I should buy more lottey tickets.

About 3-4 days before the meeting I noticed something while in the shower.  It was just a small irregularity on my left testicle but definatly there.  I stood in the shower for what seemed like an hour trying to convince myself that it was nothing but I was too scared to examine it any farther. There are quite a few types of tumors/growths/masses that can be found on the testes so I tried hard not to worry too much.  But deep down I knew.
The day before my appointment I got up the courage to tell Noelle.  This girl is really good at hiding her feelings, especially if she is scared or worried, but I can always tell.  She was optimistic and glad that I was seeing the doctor on the following day.  Dr. Njuguna ordered an ultrasound and a CT scan to take place early the next week.  Exactly one week later he came in the same room, sat down at the computer and said "Ok, lets start from the top"  That wasn't exactly what I wanted to hear but I was prepared, or so I thought.

We went over the ultrasound first.  Ultraound is extremely useful for imaging soft tissue and is the 1st thing a doctor will order if there is a question of a testicular tumor.  It is pretty ridiculously uncomfortable if you ask me.  Slightly awkward with the ultrasound gel and typically some young female ultrasound technician.  Anyways, its a medical nessecity, moving on... The ultrasound showed two distinct tumors.. not good.  There is no physical way to biopsy a testicular tumor, I knew this, so I knew immediately what that meant.  More surgery for Adam, woohoo!  The 1st time around there was no real change in lifestyle, you can live with one testicle just fine.  I have proof that one chemo-surviving solo-mission boy is all you need to live a completely healthy life and have a beautiful family.  But another surgery meant something completely different 1) for the rest of my life I will have to give myself testosterone injections every 2 weeks and 2)we are done having children naturally.  Bummer...
The second bit of bad news.  On the CT image they saw another tumor on the lower lobe of my right lung.. not good.  My stomach dropped, my heart was in my throat.  I can handle testicular cancer, I've already beat it once.  The chemo sucked but I can handle that as well.  I blocked out what the doctor was saying because the thoughts in my head ran together a little like this... Lung cancer? What the...?  Is this because of the testicular cancer?  We can't sell the house now, Noelle will be so bummed...  I'm supposed to go to Minneapolis for two weeks in a few days... Has it metastasized to anywhere else?  Oh, Noelle... oh man, Brynnley.... oh my goodness... The baby.... Am I even going to get to meet this baby?  This can't be happening, hes got to be wrong.  Focus, focus, focus...... @*&$!!!  I've basically had the same thought pattern going on and on since I found out.  It mentally exhausting and plays with your emotions like crazy.  It's going to be very tough to stay positive but it's a lot easier with the support of family, friends and total strangers, so thanks :-). 

He showed me the image and I could clearly see a small white lump in the bottom of my right lung that was obviously not supposed to be there.  It's less than 1cm in diameter but whatever it is, its there.  He didn't have any answers but tried to keep my from worrying because there is so much that is unknown.  He set me up for PET/CT scan soon after surgery.  More on that later, but a PET/CT scanner is designed to look specifically for fast growing tumor cells so it would tell us if this spot could be cancer.

Surgery with the Urologist, Dr. Golden was scheduled for Monday Sept 20th and a PET/CT was scheduled for the 21st.  More tomorrow.