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.  Again...my 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 there...it 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 me...it 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 me...as 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 coffee...you get the idea.  Get moving people!


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