Thursday, January 30, 2014

Peg legs, Emergency scans and Curb appeal

The last 3 days have been up and down and filled with anxiety and exhaustion, but also some really cool things.  On Monday my left calf started feeling a bit sore.  On Tuesday the feeling was like a charlie horse that was right in the middle of my calf muscles at the base of my knee, of my calf, however you want to see it.  By the middle of the day on Tuesday I couldn't walk because of the pain.  (bear in mind that I am on a constant stream of oxycodone 24 hours a feeling pain means that the pain is pretty big)  Tuesday night we tried massage, stretching, heat and Tiger's Balm.  Stretching helps for a few minutes and I love the way Tiger's Balm smells (which is why I'm using it again tonight!).  But nothing will make it go away permanently, so I alternate between looking like a pirate with a peg leg and a grown man with yet another pain so severe that it makes him cry like a baby when it's firing on all cylinders.

By Wednesday, the pain was so severe that I told Tami that I'd be willing to involve the medical community.  So after much cajoling and looking for numbers we called the triage nurse at UNMCC.  Why call the cancer clinic for leg pain?  Two of my chemo drugs are known to cause blood clots and since the pain was so severe and so quickly onset we called them as instructed on our instructions sheets.  For those not in the know a DVT (or deep vein thrombosis) is a potentially deadly thing. all know me.  I did my homework.  So when I talked with the triage nurse, I was sure to mention that I wasn't exhibiting any of the symptoms of DVT except for the pain and location of that pain...and speed at which that pain came on.  But nothing else.  No fever, no swelling or bruising.  I was pretty convincing in my opinion.  The triage nurse consulted with my doctor and said we need to get you to UNMH for a vascular scan right now.  Can you make it by 5?  It was 4:10.  She still had to talk to me about the treatment and I live on the other side of the world.  So here's how it played out:

4:10 - Nurse: Do you know where the vascular clinic is?
          Me: No
          Nurse: Are you familiar with parking and the new additions to the hospital?
          Me: Unfortunately not.
          Nurse: Hold on...

4:15 - The nurse gave directions and told me to go the old part of the hospital, to the main elevators and then to the 2nd floor. 

4:20 - Nurse: Do you think you can make it?  If you miss it you will have to go to the UNM Urgent care in the same building.
           Me: Well...I'm 35 minutes away and it's close to rush hour, but I'll try.

4:25 - Tami: You're going to have your Dad drive you right? (Tami was taking care of Myah who was really sick yesterday and needed someone there.
          Me: There's no time.

4:26 - In my car WAY after the hours that I'm used to driving these days, flying down the roads to I-40. 

4:40 - I get to the freeway and think to myself..."I'm totally screwed."

4:50 - I miss the frontage road entrance (the only fast way to the hospital from my direction) and am forced to navigate downtown rush hour. 

4:57 - I finally get to the hospital and find a spot in the parking garage...which, as it turns out, is like 15 miles from the old main entrance . (Of course I'm exagerating, but I've got 3 minutes to gimp through a new addition to the hospital and find a small room that I've never been before. 

5:03 - I give the check-in woman my medical record number and pray.  Thankfully she says that the tech is still there and there wasn't a need to send me down to the urgent care.  *YES!*

So I get the scan.  No clots.  No answer as to what my pain is...but NO CLOTS.  That's a good thing.  A clot wouldv'e meant getting admitted right then and there and a whole new circus starting.  So here I sit on Thursday with the same pain and no good way to fix it.  I soaked in Epsom salts tonight and will douse myself in Tiger's Balm again tonight.  But we'll see how I'm walking in the morning.  Sitting and being otherwise immobile aggravates it.   In fact, the hour I spent in the car driving home from the hospital last night became one of the most painful experiences outside of second chemo day that I've had in a while.  I hobbled in the door and just started crying while Tami tried to stretch it out for me.  (Man...does it seem like I cry a lot more lately?  I think so.  Hmmmm.)

So my walking speed has moved from snail's pace to glacial.  Just in case you wanted to walk anywhere with me anytime soon.  ;)

But it hasn't been all bad news and sour grapes.  We got our new storm door and rear gate installed today and they look UH-MAZE-ING!!  Here is our new storm door and (an in the showroom picture) our back gate.

Pretty cool eh?  I think they look so wonderful.  

But to cap the night off, Myah and I had a talk about civics from a 9 year old perspective for almost an hour!  And then she wanted to talk to Tami and I about health and other things for the rest of the night.  She amazes me so much.

Sometimes ask your kids challenging questions like, "From a 9 year old's perspective what do you think the most important thing is, that government can do today?"  You might be surprised by their answers.  

We talked about federal and local government and I got to see her mind going through different scenarios and the benefits and downfalls of each position.  If you really want an independent thinker, you've got to start them thinking about the hard stuff early.  And then (the hardest part) let them work it out without you.  (still trying to perfect this step *wink*)


Monday, January 27, 2014

Jake The Shake

An interesting thing has happened with this latest round of treatment.  I'm gettin' all shook up!

It all started on Saturday morning.  I hadn't had breakfast yet and I was feeling my usual weak and unstable self prior to eating.  But what happened next was completely unexpected.  I started to shake.  Just tremors from time to time as I tried to cook my nitrate free bacon to go with some yummy scrambled eggs and cheese (I have to eat like this remember?).  By the time the bacon was done (the entire package) I was having trouble getting the bacon out of the pan and on to the paper towel adorned holding plate.  I thought this was, of course, due to not eating anything yet. 

So I started on the eggs.  In my haste to make something edible I completely forgot about the Boursin that I was going to add to the eggs and begrudgingly put some shredded colby jack on at the end instead.  Good, but not great.  Anywho...If you thought it was funny watching me transfer bacon from the pan to a plate, the same movement with eggs was even more pronounced.  "So", I thought..."Better get some of this in my stomach."

By the time I got to the table, my shaking was so exaggerated that my daughter asked if I was OK.  After assuring her that I just needed to eat something, I tried to dig in.  For the most part it worked and I only had a couple of dropped bites, but it didn't calm down.  So I decided to lay down for a bit.  Once I laid down on the couch it abated after a while.  I chalked it up to an anomaly...until it happened again the next day. 

Sunday wasn't so bad and it happened later in the day after I had eaten, so I can rule out being hungry.  Today (Monday) was the first day that I didn't shake noticeably...but I slept through half of it, so we'll see how tomorrow works out.  I'm working from home to monitor the shakes and will hopefully return to the office on Wed.  I know that this is a lofty goal, but I want to push myself...within reason.  It was the same goal that I had two weeks ago...and all of you know how that worked out.  I ended up not even being able to work from home.  So cross your fingers!

Regardless of the cause for my shakes, the experience really got me to thinking.  All of those people with Parkinson's or other malady that makes them shake uncontrollably have my utmost respect for what they are going through.  It is such a disconcerting feeling to not have any control over a certain part of your body.  In this case it was just my hands and arms, but I can only imagine the struggle that someone whose entire body is impacted goes through on a daily basis. 

Oh yes...I am in fact starting to lose my hair.  Thankfully, my hair is so short and I have a hair line that doesn't bode well for the future it's not noticeable at all (unless you take a shower with me...but I don't see any lines forming for that ride anytime soon...unless I go completely bald.  Let's face it, bald men are sexy.)  Right now the loss seems to be confined to the hair on my head and I'm hoping that it stays that way.  I like my beard.

Today I'm sharing my favorite moments of the day instead of offering a positive tidbit...

Earlier in the evening I managed to wake up for just long enough to play UNO with my girls.  That was my favorite part of the day...until just a little while ago when I was brushing Myah's hair.  I almost always brush Myah's hair, but it has become less common of an occurrence since I've been sick.  Tonight was an exception though.  As I combed through my daughter's golden locks (with quite a bit of spray-in detangler), she told me how much she missed me brushing her hair.  If that didn't choke you up, here's what happened next...After I told her I was done and gave her a hug goodnight, she asked if I could brush her hair just a little more.  She said that it felt good when I brushed it and she wanted some more time with me.  THAT was my favorite part of the day...probably of the week.  I love my girls so much. 

Dads...go brush your daughters' hair.  It's worth it, I promise.  :)


Friday, January 24, 2014

Treatment #5 and a friend in need

Today I had my 5th treatment. As with all of the other Irenotecan side effects, I did sweat quite a bit. But they added atropine to my mix to dull some of those side effects. It has cut down on some of the sweating and possibly the cramping but I think the adavan has done more for the cramps. My confusion seems to be greatly reduced as well, but the abdominal swelling is still there and should be for the next couple of days. The good news is that I haven't sweat enough to go through an entire set of clothes yet. :)

I feel pretty good today, with just tiny bouts of confusion and discomfort. I'm hoping that we can keep this rolling through the weekend. Of course, only time will tell. The big test will be tomorrow when my 2nd chemo day hits. I'm hoping and praying that my Monday, Tuesday and Wednesday are better than last chemo weekend follow on. Last time I was so sapped of energy that I couldn't do much and ended up losing 5 pounds in just those 3 days. This time I'm going to try exercise and activity to combat that malaise. 

But enough about me. I'd like all of my prayer warriors to take some of the positive prayer and energy that you are sending me and divert it to my friend and neighbor Chuck. On Monday of this week he was warming his car up in his driveway early in the morning (just like I do btw...) and someone decided that they were going to take it. Chuck was in the garage when they moved in and as he tried to stop them, they ran over him.  He has had multiple surgeries for a collapsed lung, 10 broken ribs and a broken leg/ankle.  The police said that a smaller man would have been killed.  Chuck is still in the hospital and needs healing prayer.  The police have found his car but have no leads on the suspects yet. Hopefully they will brought to justice soon.

This has brought yet another new set of experiences to our lives.  Fear and anger.  This happened Monday morning 50 feet from my front door.  I was getting ready work at the time and heard a noise outside but was being sick in the sink at the time so I couldn't think much of it.  I'm angry that there is evil in the world that would do this to a good man.  I'm angry that I was too sick to know what was going on and be able to render proper aid.  And fearful that this happened in a very quiet, close and seemingly safe neighborhood.

I pray this evening for a quick recovery for my friend and neighbor.  I also pray that those who do this kind of thing have a change of heart and choose kindness and compassion over ill will and selfishness.  It should also be said that they need to answer for their crimes and be held accountable to the fullest extent of the law.

Be kind to your brothers and sisters in this world.  And I mean really be kind to all of them.  Don't be selective because of what they've done or who they are or how they choose to live their lives.  Every human being on this planet is deserving of your compassion and consideration.  If everyone took a moment to understand that, this world would be such a better place.

I love you all


Sunday, January 19, 2014

Friendship and a Superhero

So many people have offered to help my family and I with this struggle.  The response from friends, family and people I don't even know has been humbling.  I had no idea that I had touched that many lives.  This help has come in many forms, from food to house cleaning offers to taking Myah so Tami and I can focus on each other or get through a chemo weekend.  I am so touched by all of this generosity that I regularly devolve into a blubbering, sobbing mass trying to say thank you or put into words how much it means for this person(s) to do what they are doing.

I have so many dear friends.  Since our little family unit has covered more than a few states in our 14 years, many of our friends are distant.  That makes it difficult sometimes to communicate or offer to help.  Some have gone so far as to offer to fly down just to see me or hold my hand while I struggle.  These are some of the most amazing offers to me.  That I would mean so much to a person that they would get on a plane and plan a trip consisting of multiple days just to be with me for an hour or two, boggles my mind. 

This has been offered many times and actually scheduled more than once!  I want to say to these people that I'm not worth the time and expense for such a short period of time and a completely uncertain set of circumstances.  Depending on when they get here, I may be actively involved in a chemo treatment which can result in a confused, sweaty, falling down, wracked with pain (etc.etc.etc.) Jake.  That's not how I want my friends to see me.  But I am quickly reminded that it wouldn't matter to them.  I'll always be their Jake.  I may be fine one minute, involved with conversation or doing something outside of the house...and the next be couch ridden with pain or nausea or something else entirely.  To which I am again reminded that it doesn't matter.  If a two day visit turns into a 1 hour meeting they have achieved their  goals, I've been told.  These are amazing people.

I still maintain that, logistically, that is a lot of effort for an uncertain audience with little ol' me.  But I've been learning to just go with it.  So...if you live down the street or across the country and want to see me, here are the ground rules:

Try to come on a non-chemo week.  Your return on investment has much greater odds at being positive.

If you have to come on a chemo week, just be aware that the visits will be short and you need to be prepared to see some demons, because that's when they have their day.  It's not a pretty sight and sometimes turns into borderline horror show.  It's hard to watch and if you don't want to see me at my worst, stay away from chemo weekend and the first part of chemo week.

Be ok with me passing gas, hocking up ungodly looking stuff from my throat and running to the sink to vomit.  These occur daily and I can't control them, well not so much the vomiting...but definitely what sounds like it.  If you don't like blood, I'm sorry.  A lot of it comes out of my nose and throat.  I can't do anything about it, so any uncovered trash can in the house looks like it's been ringside at a boxing match.

I might fall down.  I might not be able to get up off the couch, or out of bed.  I might be stuck in the bathroom.  These are things that can happen at anytime.  I can't predict them or control them.

OK...Now that I've scared everyone off...time for a quick status update!

A lot of people have been asking since my last blog post.  My answer is this.  MUCH better...for the past 48 hours.  Friday was a good day at work.  I got more accomplished than I was expecting and I got my wife to try Turkish food.  :)  Saturday was a complete surprise.

I felt really good when I got up that morning.  We had planned on having my Dad help take down the unnecessarily large Martha Stewart Christmas tree in our upstairs loft.  I felt so good that I took two of the pieces down myself, navigating stairs and hallways and corners all on my own.  When my Dad arrived, he had my mother in tow and she was hellbent on cleaning.  Everyone was involved in something and all expected nothing from me aside from the occasional wave from the couch.  What they got was so much more.  I vacuumed the entire house...both floors...including stairs!  That's over 2700 sq/ft of carpeted area that I rocked with my (wife's) Dyson.  Oh Yeah!  Then I helped clean the kitchen and put away boxes in the garage (which required climbing a ladder several times...).  And then?  I helped hang a curtain.  BOOM!  SuperJake

Today I didn't feel as good as I did yesterday, but I certainly felt better than earlier in the week.

Tomorrow I drive myself into work and start on another phase in my project, so I'm feeling pretty darn good about that too.

Whew!  I'm tired just typing that.  :P  This isn't to say that I won't wake up in the morning and not be able to lift my head.  Such is the ever shifting line of reality in my new world.  But I'll take a good day any day!

Start the week off right.  Get up and think about those days that you felt like a superhero...then try to have another one.


Wednesday, January 15, 2014


For the last 3 days I have been sapped of strength and energy to the point that it's been a struggle to open my eyes and get out of bed.  I've spent more time on the couch than on my feet and my family has watched me struggle with simple tasks.  Myah finally saw some of the reality of my situation as I fell in the kitchen while Tami was in a lesson and I was trying to dinner together.  She handled it pretty well, but I have noticed that she's hugged me more than she usually does since then.

I've had to take more time off work this week than I was expecting, which is hard because I have a project that is in danger of falling behind if I can't get there this week.  I hate to take so much time off, but I don't know what's happening with my body right now and I just can't do it.  It's hard to look even half a day of work in the face when it takes your wife standing next to you and helping you to sit up just to get you out of bed. 

Needless to say, it has been a very demoralizing period for me.  I don't feel like I can contribute in any way and that I'm placing a much larger burden on my family.  I'm also having a lot of pain in my abdomen again.  Pain that had gone away for a while.  This can mean many things, but for someone who has very little will to fight right now, it just means that I'm getting sicker.  This does not bode well for my emotional state.  I've been holding back tears for days.  Sometimes I can't.  Two days ago, I was stuck on my bed while my parents waited to see me downstairs.  I just couldn't see anyone.  Thankfully, I pulled myself together and finally came down before they left and got to spend some quality time with them.  But it was a struggle.

I had to go back to a previous blog that I wrote about not letting myself be sick (here) to provide some inspiration on how I can get moving this afternoon.  I have yet to see if it works, but I'm determined to try.  My goals for this afternoon are to fold laundry and find some way to get moving.  We'll see if it happens.

I'd like to end with a little positive witticism like I usually do, but I just don't have it in me right now.

Friday, January 10, 2014

A Mixed Bag

Well, the Doc didn't ask if we wanted the good or the bad news first. He led out exactly the way he should have, and told us that the CT results didn't look good. My tumors have been incredibly aggressive and have spread like wildfire throughout my liver.  He showed us the pictures and golly gee whiz...they really don't look good at all. It's like one of those small parties that gets blasted out on Facebook and 10,000 people show up and trash the house...that's my liver right now. That's the bad news. 

The GOOD news is that he is sure that we have the right drug combination now. Not only was the other drug killing my liver, it wasn't doing a damn thing for my tumors. It's like it was trying to kill me twice as fast. Glad I'm off that one!  :)  We know that the new drug is better because all of my liver numbers are going in the right direction now. My enzymes and bilirubin are all coming back down to normal levels.  This means that we can start some pretty aggressive treatments on my liver soon. I will hopefully be going into radiation sometime in March, and our options don't stop there. So...exciting!

The other good news is that it hasn't spread anywhere else in my body. I still have the primary tumor, as well as the party in my liver. And I still have a couple suspect lymph nodes down around the primary site, but (and this is important for me) my lungs are nice and clear. This cancer likes to go from liver to lungs, so this was a big concern for me, especially considering the aggressiveness of it. 

He asked how I was handling the new drug and I told him it has been an incredible difference over the last one. You are all familiar with my feelings on my new drug vs. the old drug, but there is another benefit as well.  Between each treatment on the old drug I would lose between 5 and 8 pounds. I weighed in today just one pound lighter than I was two weeks ago. That is HUGE!!  I can't tell you how happy I am with that result. I've been eating more and have been feeling better. 

So yes...this morning was down and up. But the Doc was smiling and saying encouraging things, which is helpful because he's not one to sugar coat stuff.  That made it better on us. I'm writing this with my infusions starting. Pretty soon it will be nap time (one of my drugs knocks me out).

Social media can be a dangerous thing kids.  Periodically review your privacy settings and see who can view your posts and events. You might just end up with 10,000 people at your small, intimate gathering. That would ruin any party. 


Sunday, January 5, 2014


Tomorrow (Monday) is supposed to be my first day physically back at work since before Christmas. And I'm scared as hell. I never know how I'm going to feel when I wake up in the morning. I may be stuck in the bathroom for an hour or over the sink heaving because I didn't eat in time. And when I wake up refreshed and (somewhat) chipper, I may only be that way for an hour before I have to lay down. How does that bode for a dual 40 minute commute and a 4-6 hour day on site (splitting the day between home and office)?  With all of the challenges that I go through on a daily basis, how can I possibly go back to work?

Because I have to. I made commitments. To my team, to be there and contribute. To my family, to earn a living and provide. To myself, to get off my ass and start living my life instead of my disease. But ultimately I have no real choice at this point. We are a single income family and the wonderful health insurance that is helping me fight this disease comes from my (awesome) job. Yes, I have sick leave and long term disability...but those are nuclear options. I need to work while I can as long as it doesn't provide a hindrance to my health, my healing, my teammates and most espescially, my family. 

The hardest part of this from a mental standpoint is looking at the runway in front of me. I got diagnosed on November 15th. Shortly after we had Thanksgiving holiday. And just a few weeks after that we had Christmas shutdown and I got to stay home for two whole weeks. Now I'm faced with little vacation, precious sick leave and a long barren desert of days off. On the positive side, I'm hoping to develop a routine. On the realistic side, my reality prevents things like routine unless you're talking about pain pills and hydrating. 

I know this won't be easy. I get to the parking lot in the morning and my energy tank is already half gone. I still have hours of configurations, planning, meetings and everything else that work entails. And to top it off...a drive home. But it is necessary. It is necessary so that I may live my life and not my cancer's. So that I don't spend day after day steeped in sickness. Yes, those days will be unavoidable. But when you can will them away, if only for a bit, it makes you feel stronger. It makes you feel healthier and more capable. 

That's why I have to go back to work even though every fiber of my being is trembling right now. I don't know how tomorrow will go, but regardless of the outcome I will always have the next day to try again. 

I talk pretty big don't I?  ;)  I'm going to try to honor my words and myself with this one. 

When faced with an insurmountable challenge that makes you tremble in your boots...find a way to look past it at everything that you gain from confronting it. In this case, I keep my job, meet my commitments and distract myself from what is happening in my gut.

Now if I can just remember that in the morning. *big smile*


Saturday, January 4, 2014


Friday didn't start out as a day that I thought would be filled with accomplishments, but in the end it turned out to be a pretty good day.

I've been having well publicized issues with sleeping. I wake up from body pain due to a weird position that I've moved into or I wake up from abdominal pain due to a weird position that I've moved into (or trapped gas...that's another popular one). But I do this probably 10 to 12 times a night that I can verifiably remember. This means that my normal morning routine, getting up at 4:30 to get out of the house by 6, is in serious jeopardy. So I asked my Dr. about some options for sleep management. I also asked him about options for anxiety with my impending "first" review coming up next week. To both quandaries he recommended the same thing...50mg of Benadryl. Yes. My mouth opened just as wide. But, he is a smart man, so at 3:00 Thursday night I took my 25mg (because I was taking it at 3 instead of at bedtime) of Benadryl and my pain pill. I slept until a rock. Apparently when you lose 35 pounds in 8 weeks, things hit you a bit differently than before. Then I fell back asleep until 6:45 when I woke up drenched in sweat...sheets and all. 

At this time I still intended to work. But the Benadryl had different ideas. After spending an hour in the bathroom (non Benadryl related) and a nose bleed that required extensive work to both control and contain, I thought that maybe a half day was in order. I grabbed some breakfast and soon after started passing out wherever I stopped moving. Tami, in her infinite wisdom, suggested that I take a nap. Usually I scoff at these ideas and I really wanted to get a half day of work in. But Tami and the Benadryl won out. After a nice Snoogle assisted nap and a shower, everything was again right with the world. Once I realized that I had slept it out of my system, I visited briefly with my cousin who also has recently been diagnosed with cancer and took another nap.  It was then that the day was too far gone to get any work done at all so I called it a full sick day.  That's what happens with this thing.  Sometimes you're on and sometimes you're not.  And you don't get to choose. 

I know what you're wondering...where are the accomplishments?  Well here they are...even though my day started me out on the wrong side of the bed, in the wrong direction and on the wrong foot...I managed to surprise myself. 

I finally got on the exercise bike. I only did 5 minutes and wondered if I would need help down the stairs (which I didn't). 

Then I did exercise bands while watching Rick Steve's Europe. 

Tami and Myah were out all day with errands so I was on my own. After all the work I had done, for some reason I really wanted a Taco Bell bean burrito. Like more than anything. But the girls were taking too long and I needed something to eat right then and there. It was then that I realized that I had my wallet and a set of car keys. I'm not strapped to the couch. Heck no!  So I did it. I went to Taco Bell and ordered 4 bean burritos. Then I came home and ate one. The entire thing. 

Then I helped with the laundry and cleaning the kitchen and had a semi full dinner. 

Then, at 8:00 pm I had another burrito!

And to top off my late day accomplishments? I finished off the Haagen-Dazs coffee ice cream. Oh yeah. 

But the biggest accomplishment?  I only lost a pound this week.  That's right.  I've been losing weight like a mad man, sometimes at the rate of a pound a day.  So to lose just one pound in an entire week is huge for me right now.  I'm hoping to limit the loss to just one more pound next week...or even gain my pound back!  Yeah!

None of these are earth shattering and it would be easy to look at each one and think, "That's all?"  Trust me, I do it everyday and everyday I have to remind myself (or Tami has to remind me because I'm too mired in self pity) that these are the things I need to focus on.  Each one is a win.  Each one is something that I haven't done before in my new reality.  Each and every one is important.

So the next time you do something small and seemingly insignificant...delight in it.  Take the win, even if it isn't a big one.

(I'll be trying like hell to follow this advice, but I have unrealistically high expectations and will still need Tami's help to get me out of the pity pit from time to time.)


Wednesday, January 1, 2014

Differing Perceptions of Courage and Inspiration

I have been writing this blog since the 17th of November and have had a wonderful response to it. Many call it inspirational and courageous. Everyone agrees that my positive attitude is amazing considering the circumstances. In general, even though I deal with some tough issues, I try to leave things in a "feel good", if not just "feel better" state. And I've done a pretty good job at portraying how I feel when I feel positive.

The issue is that my online persona's positivity may be a bit misleading at times. You see, these are snapshots in time and I typically only write them when I have the energy and motivation to. When I have energy and motivation, things are usually pretty good. For those that spend the most time around me, reading my posts and the reality of my situation don't add up. So, while every positive affirmation and silly anecdote is completely sincere, it doesn't paint the full picture. 

It doesn't talk about the times when I'm so exhausted that I simply burst into tears. It doesn't talk about the constant pain that I'm in that forces me to lose hope on a daily basis sometimes. It doesn't show the contorted body positions and facial expressions, like going through electric shock therapy, that happen every couple of weeks. These are the times that stick in my caregivers' minds. 

The conversations of going off chemo and giving in to palliative care so I can end this sooner and not put everyone through the wringer. The off hand discussions of how they are currently debating Dr. assisted suicide in NM. When my pain pills start losing their effectiveness and I "tough" it out over the next hour because I don't want to change to strength or frequency of a narcotic and I practice lamaze just to tell them that "I'm fine."  These are the words that those who are close to me find it hard to reconcile when they read my posts. 

Now... am I like this all the time?  Of course not. But these times sure do make a bigger impression than others when you have to see them every day.  So I can see their points. My caregivers are limited to my loving immediate family right now, so if my wife isn't here my mom or my dad is. These are the people that see the red headed underbelly of this cancer (yup, haven't lost my hair yet). And they are the ones that I want to thank the most for getting me through those times that I can't get up the stairs or can't stop crying or can't get off the couch. Basically, those times that I gloss over with my style of writing. 

Of course I want to present the strongest, most positive front possible. I always do that, which is why Tami has to go to my Dr's visits with me, so that she makes sure the real story is told. So maybe I'm a bit less inspirational and courageous sounding in the future. I want to be honest, so there may be some darker things that show up here. If you don't want to read it, filter out everything with the tag "rant" in it. If it's not my usual happy go lucky self I'll make sure to get that tag on there. 

Thank you so much for keeping up with the blog. It is a great tool for me to heal, share and inform.