Saturday, March 22, 2014

Another reaction and encouraging numbers

Another treatment in process (#9) and another weekend of feeling like crap.  Not a whole lot to look forward to, but a necessary part of the journey.  Yesterday was a long day in the infusion suite.  It all started with a port access and labs, followed by a visit with our Physician's Assistant.  We asked questions about my headaches and the growing rashes on my stomach at each of my Lovenox injection sites.  My headaches are spurring an appointment for an MRI to make sure nothing has moved into my brain.  We'll get those results in a couple of weeks.  As for my red, splotchy stomach…we're trying a no bandaid approach.  If that doesn't work, we'll see what the next step is.  All of my liver numbers are good and my blood work is normal (platelets, white count etc.).  So that's all good news.

Then we headed upstairs to the infusion suite where things got a bit dicey after a routine start to the treatment.  Again, it was the new drug Zaltrap.  We had the nurse start it out at a slower rate as we had been instructed to when I had my last reaction and almost crashed.  Sure enough, even at a slower rate I had another reaction.  This one was caught early and wasn't nearly as bad, but I still got boosted up with steroids and Benadryl to stop it and stabilize me.  After an hour long nap we started the drug again at an even slower rate.  That seemed to work.  We'll see how it works out next time.

In other (and better) news I have two really good numbers to report.  My weight and CEA.  I actually GAINED a pound between last treatment and yesterday!  WOOOOOOO HOOOOOOO!  As you know, this has been a huge struggle for me since this entire process began.  With the diet changes and the minimal changes in exercise that I've made, I've seen tangible differences.  It's still incredibly difficult to eat as much and as frequently as I should, but I push through the pain and keep going.  So…hopefully we see the trend continue.

The other good number is my CEA cancer marker.  It's gone down 17 points in the last 2 weeks from 106.1 to 89.1.

So we like this trend.  :)  I have a CT on Thursday and will find out the results of that the following week.  Once we get those we'll be able to see if they correlate to the CEA numbers.  Hopefully this means that we are stopping the cancer in it's tracks or maybe…just maybe making it back off a little bit. I'm hoping to see more good liver than before.  However…being a realist, I'm prepared to see progression, knowing that the CEA number can be deceiving at times.  In any case, it give me hope and sometimes that's all you need.  :)

On a closing note, my McRock'nRoll was absolutely a lifesaver in it's first real test.  A 3 hour museum tour.  Built in seat and something to lean on were indispensable.  

Always have a place to park your butt.


Monday, March 17, 2014

Changing tastes and more unforseen events

As I've mentioned briefly in the past, the way I perceive taste is changing.  I don't mean a slow and purposeful evolution like the fact that I hated curry when I was a child and I love it now...I'm talking about a scattered and dynamic timeline where one minute you taste something and the next you taste something else.  The issue is that those different tastes are elicited by the same food/drink in your mouth.   This is getting pretty darn obnoxious.  Especially considering that some of the flavors that erupt in my mouth, make the food inedible. 

This is a particular issue since I need to be eating as much as I possibly can right now.  Case in point: Malt-O-Meal that tastes like onions, Sun Tea that tastes like fuel or anything slightly salty or sweet having their flavors exponentialized (yes, I made that word up...) to the point tht I have to spit them out.  This is a problem.  The only thing that I can reliably eat is Rice Chex.  Good yes.  Nutritious no.  Source of protein...8 grams per 8oz of Vitamin D Whole Milk unless I add protein powder (which I need to need to start this week). 

It is very bothersome when people ask me what they can cook for me now, because I have to tell them that I don't know.  Something that I ate yesterday could make me nauseous today or something I ate for lunch may ruin my tongue for anything I eat later.  It is a crappy side effect of one of my drugs...which one?  I don't know, I lost count in my growing list of side effects.  Crappy yes, but thankfully the unexpected nature is now, pretty much expected...unlike an arm that spontaneously no longer works.  

The Arm...

On Thursday night of this week my left arm failed me.  I first noticed at dinner when I went to drain a medium sized pot of noodles, a task I've always accomplished with my left arm without incident.  This time the pot seemed abnormally heavy.  Heavy enough to necessitate two hands to go from stove to sink to strainer.  At the time I thought how emasculating this disease was and how much muscle I must have lost in my upper body. 

After dinner I transferred the left over noodles to a container and picked up the now empty pot, again with my left it habit, and the empty pot was just as heavy as the full pot.  My arm had lost so much lifting power in the space of less than an hour that I had to use two hands to carry the pots and pans to the sink and had to get creative to actually get them clean.

The girls had a school function that they were attending and I didn't want to bother them while they were having fun (Literacy Night...Myah loves going to those things).  So I sat and looked up loss of strength and sensation in the arms.  Mind you, my right arm was doing just fine.  After a bit of reading, I had a list of potential culprits: stroke, blood clot, heart attack or aneurism.

As the night wore on, my arm got worse and I started ruling out the potentials.  Can't be a stroke because my grip strength in that hand was just as good as my right side, I wasn't slurring my speech, nothing was drooping on my face and I could walk just fine with no loss of sensation or strength in my left leg.  Can't be a heart attack because I wasn't feeling any pain or tightness in my left side or my chest.  Could be a blood clot that had developed or moved up from my leg (I actually got this theory later from my brother-in-law nurse who was awesome at triaging me after the girls got home) but I hadn't felt it anywhere else on it's journey, so unlikely.  Aneurism.  This is the one that I was the most concerned about because I saw it as the most plausible.  I have been having right side headaches for weeks now that are near migraine level but haven't actually become debilitating yet.  At this point, this is the most compelling argument for my uneducated mind. 

So naturally, I freak out.  I spend the rest of the night trying to "feel" my left bicep which, by this time, has ceased responding to anything.  I can't even make it flex...well...what's left of it.  (giggle...left...he he...get it?  the left arm...what's LEFT of it...*sigh* sometimes I'm the funniest guy in my head)  And then the girls get home.  I've been weeping and trying to distract myself with Irish dancing montages for the past 2 hours.  Tami calls the reinforcements.  Have I told you that I absolutely love her?  Well I do.  She gets a hold of her sister's husband Drew.  Despite the differences we share, I think that he is a great nurse and he sure talked us off a ledge that night.  We went through all of the questions and then Tami brought up something that I had forgotten until right before they got back from the school.  Acupuncture. 

I had an acupuncture appointment earlier that day.  Nothing special, and one that I've had a few times now (for those who need actual number correlations, here is how I use those terms...and yes, I know that Merriam Webster doesn't agree with me: Couple=2, Few=3-5, Several=5 or more).  This fact gave us all a moment to pause and rethink the issue.  It is highly possible that a nerve could've been hit and had that impact.  Since I had the treatment on both arms and the right arm wasn't having any problems we decided to wait until morning. 

The plan?  If I woke up and it was gone, it was from the acupuncture.  If it was still there, go to the ER.  Thankfully it was gone and I headed off to work for the day.  These are the things that happen in any given week, on any given day, that make me hate this ride.  It's the worst haunted house ever.  Every corner has a new surprise jumping out at you.  The only difference for me is that each one of those surprises has the potential to kill me.  Ugh!  And I can't even enjoy a churro while I'm waiting for the guy with the knife or the train painted on the wall coming straight at me.  I'm done with ride and I'm ready to get off now.

At this point, it seems like anything new is too much and my body tries to find new and inventive ways to make me think that I'm going to die sooner rather than later.  Which is why I've stalled on taking my new weight gain drug.  I don't want to introduce anything new to my system, especially one with so many common side effects with my chemo drugs, with the only difference being that I should call a Dr if I experience them while on the new drug.  Great...take this new drug, but call the Dr if you experience all of the things that you already are.  Super.

The ER...

For those keeping track, that was Thursday night.  On Friday I got home and started to take my pants off in exchange for the comforting allure of sweatpants.  I was then informed that Tami's mother was being taken to the ER after seeing the Dr about some abdominal pain after a fall she had the week before.  Because of a poorly worded Dr's order and a well intentioned but completely idiotic dispatcher/controller she got transferred via ambulance from the nice, quiet, clean and totally non-busy Presbyterian ER where she was already parked at on the east side (her Dr's office is in the adjoining building) to the absolutely packed and nuts-with-homeless-people-shooting-up-in-the-bathroom ER downtown.  All of the facilities she needed were in a place that would have seen her in and out in 3-4 hours.  Instead she was made to wait hours to occupy a hospital bed for another several hours for the same services.  Deplorable.

But where do I and my pants come in?  When Tami tells me about the situation and I see a family member in need and decide to help.  Tami asked if I had the energy for it, for which my response was (in, what I remember being, a very superhero like tone), "If it's family there isn't any question.  We go."  How cool am I right?  Take that Captain Hammer!  Deciding to leave my Superman robe at home, we jump in the car and head to the most likely place that she would be (no one told us that she had been transferred downtown instead of across a walkway until after we got there), the ER where she was already with her Dr.

She's not here...That was the answer that we got time and again when we asked about where she might be all over the ER on the east side.  Then we get the news (from Tami's sister instead of the hospital that SHOULD be able to tell us) we race downtown.  After getting there and learning that she had been sent for labs we took up a spot in the waiting room and I donned a mask immediately.  After a short time she got wheeled out and told to to wait for a room.  2 hours later she was called back.  Tami and her sister went back with her and I waited and watched as helicopter after helicopter dropped new patients off and people of all types use the bathrooms by the entrance for a "variety" of reasons. 

An hour after that Tami's sister had to go home to take care of her little one and Tami and I elected to stay.  I went back to the room and we waited.  She had already seen the Dr and received orders for a CT with contrast and pain meds.  The waiting went on for another hour until I went out and asked about it. 

Tech: Who's your nurse?
Me: We haven't even seen a nurse.
Nurse: (flushed and overworked) It's me.  I'm so sorry for the miss.  I'll be right there.
Me: (Steaming) Thank you...

The nurse's name was Pete, and to his credit he was a great guy and a wonderful nurse.  But it was more unnecessary pain and waiting for Tami's mom.   By the time she got to go to CT it was past 10pm.  Her original appointment was at 2pm, so she had already hit the 8 hour mark.  We were going on 6 ours with little to eat and a (albeit superheroish kinda guy) cancer patient who starts to wave the flag around 6pm every night.  But I had coffee in my veins (that I would later learn was decaf...thank you placebo effect...) and a Mom to take care of.  Just before she had gone to CT, Tami and I drove our car up to the ER on the east side and drove it back downtown so we could take her home and still sleep in our own beds. 

The GOOD news is that it wasn't anything really threatening like internal bleeding or a lacerated organ.  Just some things we have to monitor for awhile.  They gave us the go for discharge.  It was like seeing the checkered flag.  I wanted to jump up and down and drink a quart of milk.  We got out of the ER just after midnight and started our trek to Edgewood.  We dropped her off at her house around 1:30 on Saturday morning and headed home ourselves.  We finally got home just before 2:30 and relieved my Dad who had so awesomely taken care of Myah during this circus. 

Ah least it was the weekend and I had a wonderful visit to look forward to with two longtime friends.  That is a story for another blog post...but suffice it to say...with my Friday being crazy and energy consuming and a full weekend of visitors, I had to take today off because my energy was sapped to the point that some unknown force made me sit on the couch and watch TV.  Finally caught up on Season 6 of the Guild and started at the beginning of one of my favorite business trip shows...Burn Notice.  I'll be going straight through on that one over the next few months.  :)

It is late and Tami is already looking at me with those I-told-you-not-to-start-a-blog-after-8pm eyes.  So you'll have to read about my awesome weekend later. 

Know when to hold 'em, know when to fold 'em and know when to walk away. 

Until next time...


Friday, March 7, 2014

A big scare, new motivation and mobility devices

Today is my eighth treatment and I can tell you, I didn't want to come this morning. The particular drug that I start with makes me feel horrible all day. By bedtime I'm more than ready for the day to be over and already dreading the next two days. Thankfully the weekend is a bit better now that I have a cocktail of chemicals to stabilize things. I've already pulled a couple of movies for the weekend. We'll see if I get to them. Top Gun, Terminal and Office Space. Tami also has the final part of the Twilight series coming....

So today was another day that reinforced the concept of expecting the unexpected.  2 weeks ago I got switched to a different drug in my chemo regimen.  2 weeks ago I had no reaction to the drug.  But today I had a very real and scary allergic reaction during my treatment.  This is always a concern with a new drug and today it was realized.  30 minutes into a 90 minute infusion I started to feel sick and my entire head turned lobster red and started radiating down my neck.  This all happened in a span of 3 to 5 minutes.  At that point Tami called a nurse and a team of amazing women sprang into action.  If you read my FB post, you'll know that the offending drug was cut off and I was immediately pumped full of steroids and Benadryl.  After an hour of monitoring and stabilizing, it was decided to restart the drug infusion at the same dose but half the rate.  That seemed to do the trick and after another 90 minutes, started my last drug.  It's very important to note that I was just minutes away from a rapid response team and a crash cart, but thanks to Tami recognizing the need to get the nurse and the team's fast and focused response, that didn't happen.  I owe a lot to these wonderful women.  After 8 full hours at the hospital we finally got my fanny pack and went home.  It was a long day to say the least.  But I'm better now and ready to move on with my weekend.

But enough drama...I had several appointments with some very smart people this week that has given me a renewed sense of motivation.

On Tuesday I had an appointment with an exercise physiologist who gave me a band workout that won't eat up too many calories and will hopefully remind my body that I actually need those muscles and it's not very appropriate to eat them.  He also turned me on to a new start-up called Green Growlers.  Tami and I had been looking for a way to start Green Smoothies but were a bit intimidated.  This company delivers growlers full of organic green smoothies to your door once a week.  This is going to be a great way to get introduced to the concept and I'm really excited about it.

On Thursday I had an appointment with a registered dietician who gave me clear and concise direction on a meal strategy.  I'm going to increase my milk consumption, start putting protein powder in things that I never thought possible and eating more veg.  I'm excited.  I am also motivated like mad.  I ordered a new set of bands, a different kind of sugar (dextrose vs sucrose or fructose) that is going to be easier on my liver and we're going to start with green smoothies this week.

Another motivating factor is today's CEA number.  106.1  That's a wonderful number.  As this chart illustrates, the trend that began with my last lab result continues to head in the right direction.  A drop of around 34 points!  I'm really interested to see what my next CT result says and if it correlates with the CEA number.
In the line of thinking that you have to take the good with the bad...I'm still losing weight.  Albeit only 2 pounds in the last 2 weeks, so that's good.  But, with the weight loss and mix of drugs, I'm losing some mobility.  I showed off my cane a couple of months ago and today I ordered something that will enable me to walk a bit further and rest when I need to.  Even if it does make me look like an octogenarian.   Now, this isn't an everyday device, but if I want to walk more than 5 to 10 minutes at a time I'll need it.  It's the Rollator by Hugo...or as I will call it from now on...the McRocknRoll.
Yup...I've now got a walker.  But as one reviewer on Amazon put it...It's a man-sized Rollator.  That's right.  8" wheels instead of a puny 6".  Reinforced aluminum frame with a seat bag AND a saddle bag.  When I'm not tearin' up the pavement (or any other moderately graded terrain), I can sit back and relax on the padded seat and backrest.  Manly comfort.  ;)  And to top it off, I got a sweet water bottle holder that bolts on to the frame for maximum hydration.  Oh Yeah. 

So...when life gives you lemons (or eats away at your muscle structure) find a way to adapt and overcome...even if it means getting a totally manly and rockin' Rollator.

Keep rolling my friends.