Friday, February 21, 2014

Good news, changes in treatment and a new concern

It was long shitty day.

Today was treatment #7, the treatment that almost didn't happen.  It was a day that started at 7:30 and ended at 3pm...and that's just hospital time. 

Delay #1 - They had issues drawing blood from my port.  This may be due to the catheter shifting in the artery and acting like a straw at the bottom of a cup.  Blow into the straw and you're good, try to drink from the straw and it suctions to the bottom of the cup and prevents liquid from coming up.  It could also be fibrous material growing/collecting at the tip of the catheter.  Either way, something will have to be done at my next appointment to fix it.  I've been assured that they won't have to go back in and fiddle with it so surgery won't be necessary.  Which is good because that would put me off chemo for a couple of cycles with the blood thinners. 

Delay #2 - Because of my weight loss my Dr wanted to have me join a clinical trial (more on this later).  We were pretty excited about this and immediately agreed.  There was a lot of hope and good feeling conveyed about my participation.  This would also necessitate that I delayed my chemo treatment for a week.  (I was looking forward to a week off.)  After signing all of the consent forms, it required an EKG.  So we waited for a tech and had the test run.  After I had all of the pads ripped from my hairy appendages, I was told that we would need to repeat it because one of the numbers was slightly high.  30 minutes later I was being hooked up for my second EKG when the trials nurse came in and said that I had been disqualified from participation because I've had blood clots in the last month.  Damn it.  2 hours (and quite a bit of leg and chest hair) gone. 

After that news it was determined that I would have treatment today.  So I did.  My original appointment was at 9:15 and I checked in to the infusion suite at 11.  And it started with a new drug. drugs always give me a little bit of heartburn.  You never really know what you're going to get with it.  That point was driven home today when a woman in the suite next to mine had an allergic reaction to one of her drugs and went unconscious.  They had to call in a rapid response team and pump her full of steroids and other drugs to wake her up.  As someone who now puts a variety of chemicals in their body, this is always a lingering thought in the back of my mind.  The new drug replaces my Avastin and is named after an alien planet...the planet Zaltrap.  Yes...I'm filling my veins with something that sounds like a 1980's space character.  We'll see if it has a better result than the Avastin.

Good news - So here's the good news...I'm putting it right in the middle because...well that's just where it fits.  It's nothing to end on (although it should be) and I wanted to bitch about my day first.  So this is what you get.  My tumors haven't progressed much at all.  Certainly not like they did between my diagnosis and second CT where they exploded like a bunch of little party poppers that you get on New Year's Eve.  And to back that up?  My tumor marker, the CEA number that you hear me talk about from time to time, has gone down.  You heard me right...DOWN.  And by more than it went up last time.  This time it's 140.4.  That is a drop of almost 20 points!  Right now, this is the ONLY thing keeping my head above water.  I didn't find out about it until I got home, but it was news that I needed, when I needed it most. 

A new concern - Why did I need good news?  A new C word.  And this one doesn't end with *ancer.  The word is Cachexia .  According to the National Institute of Health, "Cancer cachexia describes a syndrome of progressive weight loss, anorexia, and persistent erosion of host body cell mass in response to a malignant growth."  It's also known as wasting syndrome.  It basically means that my body is slowly eating itself and despite my nutritional efforts to this point, I have been unable to stop it from feasting.  In just under 4 months, I've lost 46 pounds.  If you do the math (which I have many time in the past few weeks) that doesn't give me a lot of time to fix this.  In another 4 months, without any changes, I'll be under 160 pounds.  We're talking middle school weight for me and not at all healthy.  Without sugar coating would be near the end.  That's the hard part of all of this.  I have terminal cancer.  And now that seems to be the small problem. 

I don't like to end these things on a dark note...and I'm trying to focus on the positive.  The fact that I'm feeling stronger and reacting to my treatments faster and better...I realize that those things should be my beacons in the night.  But this is all just a bit overwhelming at the moment and the issue of mortality is front and center...and for the first time in this journey...measurable.  I can't put into words how difficult it is to share this.  It feels wrong.  It seems like it should be something that I keep to myself and struggle with, without bringing everyone else into it.  But I know that I need the prayers and support and positive energy.  Because my tank of that stuff is really low at the moment. 

Don't lose sight of the truly important things in life.  Hold your loved ones close.  And forgive those who may have wronged you. 

I love you all. 


Wednesday, February 12, 2014

Drained...on fumes...totally gassed

This week has been filled with surprises. I woke up on Monday morning (the Monday after chemo weekend) and didn't feel like death. In fact I didn't feel too bad at all. There were spots where I didn't do too good. But in general I didn't fare too badly. I even ventured out and purchased two pairs of pants (because nothing fits my shrinking body anymore).  And then Tuesday I put in almost a full day working from home. Score!  I felt so good that I challenged myself to get up before the sun and actually drive myself to work. Now...this has been a goal for some time, but hasn't come to fruition since my treatments started. Well I did it. So there. Go me. :)

Today was a blur. I got to work at 7:00 and figured that anything else was icing on the cake. I mean, I just pulled off a feat 3 months in the making. I got my butt out of bed at 5 am, gathered all the necessary accoutrement and drove a motor vehicle, by myself, and parked in the parking lot on base...without killing anyone, including me!  Level up accomplished. Now I just had the rest of the day ahead. 

Ever since my treatments started, I've been half time onsite at work. My boss and my team have been wonderful with accommodating my schedule, as unpredictable and sporadic as it may be. The other half of the time, I either work from home or take sick time and sleep, or moan, or throw up. You know...standard cancer stuff. So today, being the epic accomplishment of just-showing-up day, I figured that I would fade around 10:30 and go home to sleep it off. I'm glad I brought my 1:30 injection and 2:00 pain pill just in case (I was briefly a boyscout in my youth). 

I started making real progress on this project that I'm on, I mean tangible, people-can-see-this kind of progress and I didn't really keep track of time or want to stop. After hitting a light snack at 10:00 and doing some bicep curls and forearm exercises with bands, I put my head down. By 12:30 I knew I had messed up. I couldn't walk straight, much less drive a car 25 miles home. So I did what anyone would do...I looked in the snack bar fridge for some quick calories to get me home. A Red Barron personal pizza did the trick.  Although it was far from the taste experience I remember from college. Yuck. 

I surfed the Internet for 30 minutes while I waited for the boost. While I was doing that I made another breakthrough on my project...I thought. But how to proof it out?  I mean, as soon as I can stand I'm walking out the door to get in my car and drive home. Or am I?  Tami is a saint and packed me a snack bag to keep in my drawer at work. It has peaches in it.  Peaches in heavy syrup. To the snack drawer!  One cup of peaches later and it's time for a pain pill and my injection. After tackling both of those and recomposing myself I hit the hallway for politicking and theory validation.

I ended up volunteering to be a champion for another team's cause because it just makes sense and they need a voice on my team.  Then off to the computers to prove that I've cleared this latest technical hurdle. Just 90 minutes later and I have. We have yet another vital component to continuing our project. My cape was flapping in the wind triumphantly. :)

So now it's 3:30. 5 hours after I anticipated being gone, and coincidentally, the end of my regular work day. Holy crap!  After 3 months of grinding out half days and patching together telecommuting time, I spent and entire day work...and was productive for almost all of that time?!?!?!  You could've pushed me over with your pinky. No really...I was feeling the hurt by then. It was time to go. Just grab a Vitamine Water for some up-and-at'em and head out the door. But I had to get my pants from the seamstress. Shoot. Well...I haven't stopped yet so why stop now?  

So I head across town to grab my pants. But there's a Sprouts next door and I don't think we have anything planned for dinner. Plus I need some ingredients for my new ice cream maker. Don't get all excited was flaxseed oil and cottage cheese. Yeah...I'm sure there will be a blog about that experience. I rummage around Sprouts to the tune of $50 and finally get in the car to head home. I navigate pre rush hour traffic easily, still riding my I-can't-believe-I'm-still-going high, and then...just two miles from home, I hit the wall.  Or the wall hit me. Either way, I'm glad that I could at least point in the direction of my house so the car would know where to drop me off. 

I stumbled in the door and doggedly made the dinner that I had planned. (Veggie hotdogs and veggie chicken nuggets with salads...the salads were good....)  After dinner it was clear. I would be a worthless lump for the rest of the evening. I managed to brush Myah's hair, but that is the sum total of my accomplishments after 6:30.  At this point in the evening I don't know what tomorrow holds.  I may not be able to get out of bed or lift my arms or even speak.  But today was magnificent. I hope that I can repeat half of what I did today tomorrow.  Tami says that she will have no sympathy if I can't move in the morning. (I don't believe her though)

Apparently I'm into the string-words-together-to-emphasize-something style tonight. Sorry about that. I'm talking pretty slurry too so I guess it makes sense. 

The next time you feel like you can't do something...try it. You might be surprised by what you can accomplish. 

I'm off to save a train full of orphans speeding towards a washed out bridge. Have a great night!


Saturday, February 8, 2014

Treatment #6 and positive news!

Yesterday was number 6 in my endless number of chemo treatments.  It went reasonably well.  I think that I'm starting to get used to this schtick.  I'm starting to find the nurses that I prefer and the infusion suites that have the best view.  I also found out why I prefer the left seat in the suite.  The infusion pump is on the right of the seat and my port is on the right side.  I never made the connection of a tube crossing over my body and the logistical challenges it introduced, just because of the seat I chose.  The learning never ends.  :)

We met a woman who is in a similar situation to me who had a lot to say about nutrition.  She had some good ideas that we are going to try out.  And some that I just can't.  One specifically, that has been brought up by so many other cancer patients.  Medical marihuana.  Due to my job and the sensitivity that is involved with it, even prescribed medical marihuana is a no-no.  I find it interesting that so many cancer patients find it incredibly beneficial for relieving a multitude of side effects.  But again...absolutely not an option for me.  I'd stand to lose my job, health insurance, life get the idea.  So I'll stay with my prescription opiates and various other medications and keep rollin' on.

I also have two bits of positive news today!  I can walk.  :)  With the injections getting easier to administer and not just a week old, my leg is about 95% better.  No more limping and much less pain.  I'm a happy Jake.  So I have a year left of the injections which I'm happy about with the increased risk caused by two of my chemo drugs.  I just have to be careful about not all.

The second piece of good news regards that CEA number that I referenced many blogs ago.  This week's number is still higher than my last measurement.  But it's the amount higher that is the good news.  In the last two weeks, my number rose only 9.1 points.  This is the smallest rise in the number since we've been on the new chemo drug.  This COULD mean that the new treatments are slowing things down.  It could mean that the treatments aren't doing anything, but that something else in my body is impacting the number.  That's why they call it a suggestive number instead of a diagnostic number. makes me feel good for the weekend.  And of course, since I'm a geek and I have some time on my hands, I decided to start trending it.  You can see from the chart below that it was relatively low at diagnosis and spikes quickly after starting treatment.  Now it's starting to level out, and the hope is that it stays level or even starts dropping. 

So...While it is no sure thing. It is something small to celebrate and sometimes that's big enough to make a difference.  And it makes me happy.  9.1 is a good number me this week.  And now I can't wait to get labs done in two weeks.  Speaking of two weeks...we will be going over my next CT results then.  So...Big day for me on the 21st.  Technically I won't need the CEA number because I'll have an actual diagnostic measurement.  Pictures of the crap growing in my liver and colon.  We'll also see if it has started to spread.  My Dr. was very surprised that my lungs were still clear with the aggressiveness of it's rate of spread.  As a Tuba player, I'm crossing every finger that I have that it stays out of my lungs for as long as possible.  Being a realist, I do recognize that a move to my lungs is more than just a possibility, but a very good probability at this point.  But I'm hoping to delay that until we figure out the liver thing. 

So let's keep the good news flowing through the week.  And remember that even small bits of good can do great things for you and the world around you.  Stay positive and keep smilin'. 


Tuesday, February 4, 2014

Best Weekend Ever! And a new bump in the road...

No...I'm not a Seahawks fan.  I am a fan of two amazing people that brought it upon themselves to follow my schedule, pick out a time that had the best chance of an "energetic" Jake, purchase tickets, book hotels and rent a car just so they could show up on my doorstep to show me a good time.  Jasen and Sunshine, I love you dearly.  Even though you didn't ask if you could come before you spent time and money to travel over 1000 miles to see me. You took me as I was.  Yes, the first day I had to take a nap in the middle, but Superbowl Sunday, we did a lot!  This is how I show my out of town friends, who've never been here before, a good time with only two days to work with.

Friday night:
They arrive and I send them to a great bar for dinner (Turtle Mountain Rocks!)...where the kitchen was closed.  Luckily I gave them a back up plan to head over to the Fat Squirrel if anything went awry.  And they did.  And they ate well.  :)

We had to start the day with a proper Frontier breakfast.  So after a quick tour of the house, we piled in the cars and headed downtown.  Myah, of course traveled with two of her favorite people on the planet...Jasen and Sunshine.  During the drive down they hatched a plan.  Myah would be a tour guide after breakfast and Mom and Dad would come home...alone.  But first? 

Breakfast.  I knew that I only had one shot at this, so I ordered for both of them.  A breakfast burrito with green chile and their choice of meat (smothered in that other worldly awesome green chile stew found at the front in the Frontier cauldrons of awesomeness), carne adovada burrito, fresh squeezed orange juice and a Frontier roll (ordered hot and delivered at the counter of course).  I have to hand it to each of them.  They finished each item with ease and a spirit of joy and happiness that is only found in children on Christmas or anyone going to the Frontier for breakfast.  

Myah's Plan...Myah made a list while we were at the Frontier.  Duck Pond, Old Town, Petroglyphs, Volcanoes...and something else I think, but I can't remember.  Since the Duck Pond was right across the street, Tami and I decided to join them and walk off some of breakfast.  We stayed a bit longer than I anticipated and I left with a pretty empty gas tank, but it was great to relive old times for two of my best friends.  We even saw an SCA speed-fighting practice.  Myah liked that.  Since I was seriously dragging at this point we all chose to leave and continue the day's plans.  I went home and fell asleep and Myah, Jasen and Sunshine headed down to Old Town.  I can't share much of how Myah's day went with her two favorite people because I was unconscious at the time, but apparently they made some scents, went to the Candy Lady and walked around quite a bit.  All capped off by the item that I had forgotten...A big shake from the Route 66 Diner.  (That was lunch)

Dinner.  Los Cuates.  Frank's combo.  'Nuff said.  People went home full and happy.

The  day started later at my request (so I didn't have to check out mid way through).  We hung around and talked for awhile and then I treated them to some Rebel Donuts.  Needless to say, they were a big hit.  :)  Then we walked those off at the Volcanoes, where I (yes, me, Jake) walked an entire mile with my wife to and from the base of the closest cone.  (Turns out this may have been a mistake but we'll catch up with that story down the page a bit.)  The intrepid trio then headed out to the Petroglyphs while I got in contact with my parents who had agreed to furnish the Superbowl eats.  Italian beef sandwiches and potato salad from our old family restaurant recipe.  There were some off the hook brownies in there too. people ate well and were happy.  The game was an afterthought really.  Sure, we watched it until the end, but only because we were having such a wonderful time being together.  I really am so blessed to have friends like those two (and so many more of you too!).
This visit pulled me out of some place dark.  I've been silently dying for 3 months.  This weekend I really lived for the first time since my diagnosis.  There was very little talk about how sick I was.  And the times it did come up were so honest and open, that we all gained a better understanding of it.

Thank you Jasen and Sunshine for doing something magical for me.  I will never forget this weekend or the innumerable nights and weekends that we spent laughing in Green Bay.  You are so special to me.

And then it happened...Sunday night I went to bed.  Many of you know that I've been having leg issues for the past week.  Severe pain in my calf that radiated up to my hamstring and back.  I had a scan on Wednesday of last week that showed no clots, but no one could answer why it hurt so bad.  That Sunday night my leg hurt so bad that I was kept awake from 2 to 4 in the morning in agonizing pain.  Pain that had migrated up to the back of my knee.  Tami helped with an ativan and a heat bag but it only served to help me sleep, and nothing for the pain.  So Monday I vowed to see my friends off and go to an Urgent Care.  So I did.  We picked one out that we thought would be speedy (wrong) and reasonably clear of sick people (also wrong).  After a quick lunch, we headed into the breach...that's where things start to get interesting.

After securing a mask on my face as soon as humanly possible after seeing the state of the waiting room, we checked in.  We were taken back for vitals not too long after that and then sent back to the viral breeding ground.  Thankfully, one of the nurses saw Stage IV Cancer Patient written on our information sheet and we were quickly whisked into a private room to wait.  This was a nice, and a very much appreciated touch.  After a bit, the nurse practitioner came in and asked questions, poked my leg and tried to stretch and move it to see how much pain and limitation I was really experiencing.  Stumped, she left to consult with a doctor.  After coming back in she proclaimed that if it wasn't a blood clot, she didn't know what it was.  But she ordered a back x-ray to see  if I was experiencing any bone issues was a vague explanation and offered little information besides the fact that (in her words), "You've got a lot of stool in your belly.  You should drink more water."  After reminding her that everything I'm taking at the moment causes constipation, we moved on.

She said that I needed another scan.  *sigh*  And that the vascular lab for ABQ Health Partners was down town.  *double sigh*  Another cross-town goose chase that would put me in the thick of rush hour traffic and just add to my ongoing consternation.  Luckily I had Tami there to be a backup driver (and backup anything else really), so we made like bananas and split.  Seriously, it was 3:15 and we were in Rio Rancho.  She made the appointment for 3:30 and told them that we would be a few minutes late.  In the car we didn't talk about much beyond our experience at that urgent care and how we wouldn't be going back anytime soon.

We arrived at the vascular lab at 3:45 (because I rock and am awesome at speeding through town because I've been giving an unrealistic time frame...again).  I checked in and was immediately called back, not a surprise since we were literally the only ones there.  As we walked back to the ultrasound suite with two technicians, the first extends his hand and introduces himself as John, a CNM (local technical college for the out of staters) intern who would performing 90% of my scan.  My already dreary mood takes a nose dive.  The other technician is Mike and he will be walking John through the procedure and helping when needed.  "Where is this day headed?", I ask myself.  But before we go any further I have to travel back to last week and tell you about that experience.  Bear with is relevant. 

My first scan went a little like this:

Me: Howdy!
Tech: Hiya!
(Both characters enter the procedure room with Tech leading the way)
Me: (starting to place phone, hat and water on the table and preparing to disrobe) Do I put the gown on in here?
Tech: Oh, there's no need to get into a gown, this will be quick.
Me: Sounds good. (starts to take off jacket)
Tech: Oh just leave that on. Really this will be quick.  Now hop on the table on your back.
Me: Um, alright. (looking perplexed but grateful that it won't be long and complicated)
Tech: Now, just undo your belt and pull your pants down to your ankles.
(Me, still lying on my back, complies and ends up on a table with a jacket on and pants around my ankles)
(The scan begins and the gel is cooooold)
Tech: (running the wand up and down my leg like a NASCAR driver, stopping briefly now and then to take a picture) You've got good sound through all your veins and I don't see any signs of clotting
Me: That's good news!  My pain is more in the middle of my calf.
Tech: A lot of patients ask me why I'm not scanning the area that hurts.  This is a very specific test, looking for very specific veins.  Your pain might not be near one of those veins.  So trust me.
(Tech gives Me a towel to wash the goo off my leg and pull my pants up)

Less than ten minutes after I lay down, it was done.  Had I not been as tired or relieved that no clots were found, I may have felt like this was an alleyway appendectomy.  But I didn't.  So we fast forward to Monday of this week.  Again, right before the closing bell of the department and now I have an intern looking into my legs.  My left leg took almost an hour.  They found three clots.  The one in my calf had traveled up to a spot behind my knee.  I'm guessing this happened on the night after my mile long, Super Jake adventure.  This is how different these guys were when compared to the lady at UNM.  After finding the clots in my left leg, they scanned the right leg as well.  Just in case.  Between these scanning sessions I asked that Tami be brought in because we had some calls to make and it was dangerously close to 5pm.

The only referrals that the techs at ABQ HP could make were to an independent coumadin clinic or the ER.  After the day that I had, I was NOT spending the night in the ER.  So Tami got in touch with my super cool oncology team at UNM and updated them on the situation.  After some time they got back to us and said that I could start getting my shots that night at the UNMCC infusion lab (same place I go for treatments).  Huzzah!  So no ER for long as I could get there by 6pm.  By now they are finished with my right leg and had gone back to left leg for some shots that they hadn't taken before (comprehensive and responsible...unlike the tech at UNM) and it was a shade before 5:30.  Luckily we were only 5 minutes from UNMCC.  Finally, we're not rushed.

So there we have it.  I have clotting in my left leg.  I have to get daily shots for 30 days and then reevaluate.  This week all of those shots will be at UNM.  Even on Saturday and Sunday while I'm fanny pack infusing.  Hopefully next week we get clearance to do the injections at home.  Meanwhile, I'm to stop practicing my sword swallowing, chainsaw juggling and crocodile wrestling.  And since I'm going to suseptible to clotting in the future (two of my chemo drugs list it as a side effect), it doesn't look like I'll get back to those activities anytime soon.  *le sigh*  I did put together a bleeder specific first aid kit to to carry with me though.  And a bigger version for the car.  'Cause I'm smart like that.  (It was my Dad's idea...)

With all of the other things that can kill me right now, I'd much rather not have something that can do it so quickly, but we have to play the hand that was dealt us.  So we adjust, compensate and move on.  Tami and I are getting pretty good at that.  :)

Get up out of your seat and take a five minute walk at least once an hour folks.  Your veins will thank you.  And you might just meet someone new on your micro journeys.  Or at least smell a flower, or some get the idea.  Get moving people!