My 24 days of HSCT!

  •  Saturday, March 25th…travel day. Two check in bags, but very few clothes. Lots of stuff! Car at 4:30p, flight at 7p.
  • Sunday, March 26th.  Moved into our apartment around 1pm, then generally waited until we got notice of a van to Walmart at 6:10.  Good news…found the Rockets game on a local channel.  Ever listen to an NBA game 100% moderated in spanish?  The announcers big deal (from what I could figure out), was the use of middle names.  James Edward Hardin and Trevor Anthony Ariza.  Either way I think the Rockets won.  Final thought: Ever been to a Mexican Walmart that was bigger than 6 football fields, totally packed with people speaking a different language, that felt more like a carnival midway.  You figure your thoughts…
  • Monday, March 27th.  Day 1. Wow!  What a long day.  Started at 7am with a blood draw and finished with an EKG at 7:30pm.  We are now separated into a small group of 5 patients and their helpers.  My group is quite diverse with one patient from Norway, one from Australia, and the other 3 from the USA (me, one from Wisconsin, and one from Missouri).  We are team #2 of 4 teams.  We might never see the other groups for the rest of the time. Busy 1/2 day tomorrow…team dinner, then chemo starts Wednesday.
  • Tuesday, March 28th.  Day 2. Another busy day seeing Neurologists, Endocrinologists, and more.  Enough of that.  Wikipedia says Puebla is 3 million people.  They have never been here, feels like 5 million!  Several times since we’ve been here, Suzi and I have said this place looks just like Los Angeles.  Same weather, same topography, same flora and just as crowded!   I would come here for a quick vacation (quick 2 to 3 days).  Enough of that.  Chemo starts tomorrow.
  • Wednesday, March 29th.  Day 3. Chemo day from 2pm until 7pm.  Have to drink 3 liters of water on chemo days = lots of bathroom stops.  I felt great the full 5 hours and more and the nurses were surprised.  There were sickness by others around me.  Prior, when Suzi and I met with the doctor here, he said eat salty chips to combat chemo.  So…doctors orders…last night I had lots of Fritos and an apple for dinner!  I did wake up about 1:30 with a raging headache, weird stomach, and hiccups.  Supposedly all normal and they have medications for all for me, maybe Thursday after the next 5 hour round of chemo from 8am until 1pm.
  • Thursday, March 30th.  Day 4.  Yep, writing early because we’re done for the day, and I think my observations will be more fun!  First, had 2nd round of chemo today.  Again, 2 of the 5 of us were very sick, even on the van over to the center (20 minute drive).  All good here but tired.    NOW!!  For the observations:  When all 10 of us in group 2 jumped into the van together for the first time, on day 2, there was an order…AND THE ORDER HAS NOT CHANGED!!  We get in and out of the van about 4 to 6 times per day and its always the same order!!  I go first, then Suzi, then the guy from Wisconsin and his carer, then the woman from Norway and her carer, then the woman from Australia and her husband, and finally the woman from Missouri and her husband.  Then we all sit in the same seat we sat in the first time!!  WILD!   You would be totally bored with how we get out…different order, but same order every time!  In the chemo room we go to the same chairs and quietly everyone covertly checks out everyone else to see how they are doing!  Strange but true!
  • Friday, March 31st.  Day 5.  What a crappy / great day.  Woke up at 3:45 this morning with a huge post chemo stomach issue.  So got up then and went in the den to spend the morning, sick…which became the full day, all with Suzi.  Felt better by 8am so binge watched Netflix all day.  Dialing into Bugle Boy for live music on the computer and watch the Rockets again in Spanish tonight…all while in my nite  clothes.  Oh yah, started the next phase of treatment today.  A shot in the arm at 8am then another at 8pm, here in the apartment.  Combine that with perscription meds with the objective of supercharging my stem cell count.  Same boring thing through next Thursday then on to stem cell harvest, more chemo, stem cell reintroduction, then 8 or 10 days of recovery.  Cheers!
  • Saturday, April 1st.  Day 6.  Day 6 is the second day of a 5 or 6 day stretch of waiting.  Had a doctor come to the apartment and give me a shot at 8am and 8pm.  The shots are to build my stem cell count even higher.  Took about 3 naps.  Had the chemo sour stomach all day. Just when I thought I felt better (around 10am), finally ate some food…and had a huge stomach issue.  Oh well.   Binge watched Netflix, even went down to the pool for about an hour.  Good news is I know what I get to do each of the next few days!
  • Sunday, April 2nd.  Day 7.  They say flying a 747 with hundreds of passengers is a huge experience…two moments of pure terror (takeoff and landing), with hours of boredom (flying through the sky).  Thats our life right now.  A shot at 8am then another at 8pm (pure terror)…then lots of boredom in between.  Today we did go to the Puebla City Centre outdoor shopping area, shopped, and even had a big late lunch out, all with group 2.  Beyond that its all Netflix, naps, and thinking about all of you!!
  • Monday, April 3rd.  Day 8.  We are getting so close to the reason we are here…stem cell draw, heavy chemo, then stem cell reintroduction.  Starts Thursday, but until then another day of shot at 8am then another at 8pm.  Did meet with the hematologist today who reminded us that the next two days are not a piece of cake.  The shots are to cause your bones and bone marrow to create more stem cells.  The bone marrow is taxed to the point the bones start to really really hurt.  Thats tomorrow and Wednesday!  Did order MLB TV today to catch Astros baseball and had an all team dinner (21 patients with 21 or 22 carers).  More on that later.
  • Tuesday, April 4th.  Day 9.  …and the train is coming down the tracks…  After the fun heats up Thursday and culminates with stem cell transplant on Sunday, I reach a phase called “Neutropenic”.  At that point I have little to no immune system and become a homebound, mask wearing, bubble boy.  So…today we went to Walmart and what could be one of my last public ventures for quite a while.  Don’t feel sorry for me, I also had the foresight to see I’ve only got about 5 days to eat what I want (kind of).  Loaded up on Ben and Jerry’s, chocolate chip cookies and more crap.  Spent the day trying to eat it all.  Felt like crap and went to bed.
  • Wednesday, April 5th.  Day 10.  Another morning…another shot.  We wake at 6:40am then run into the den area and wait for the knock on the door that announces your shot.  You only know it will be anytime after 7am, but be ready.  There is anxiety!  Sometimes you hear the elevator coming to the 4th floor, but many times you’re wrong.  Sometimes you hear their footsteps coming down the hall and they knock on the persons door cross the hall (also a patient) and you know you’re next!  Either way, you find ways to stay busy while you listen.  This morning…no noise at all, just a soft knock at the door as a petite little non-english speaking nurse came in and prepped me.  I was telling Suzi that the shots I get each day feel like holding a bee to my arm and feeling the sting.  Once you think its done and you’ve endured the pain, they push the bee deeper into your skin for a second burn.  Just for good measure they move the stinger around one last time for that final insult.  The whole process takes from 12 to 15 seconds, and believe me I count, two times a day.  When they complete the shot, the nurse or doctor goes to a sheet and fills out a report verifying the event on a pre-populated form.  After my first shot it hurt like hell and the form was mostly blank.  I counted the number of miserable events remaining and it were still double digits and my spirits sank!!  Today was shot number 11!  Two more before the next big event (chemo, pic line, hospital time, and stem cells), but the focus on shots will be over!  Its the little victories in life that count!
  • Thursday, April 6th. Day 11.  Earlier I mentioned anxiety.  Today we rushed out of bed, got the daily morning shot (last one for a few days is tonight!), ran down and caught the Team #2 van to the hospital.  Wherever we go, events are performed alphabetically…by first name…so I’m always first.  Again were rushed up to a hospital room, asked (in Spanish) to put on a gown (I think), then wheeled off on a gurney to prepare for installation of the PICC line.  At that point I was left in a corner of a very active waiting room with three or four other patients and about nine or ten nurses.  No one spoke English and nurses were running all around me speaking Spanish at about one million miles per hour.  I sat there for bout 30 minutes watching all of the commotion.  No one talked to me, came by to check on me, or give me any feedback.  NOW THAT’S ANXIETY!  My personal thinking was, Let God and Let Go!  Ultimately, I was wheeled back and now I have a line in my subclavical vein, commonly known as a PICC line, in a vein right near my heart.  The objective is direct access to gather stem cells, have two chemo infusions (5 hours each), and re-deposit of cleaned stem cells!  All start tomorrow at 11am and ends on Sunday.  WISH US LUCK!
  • Friday, April 7th.  Day 12.  WOW…what a long day!  Left our apartment at 10:40a and got home tonight at 9:30pm.  In between, not much free time mixed with hours of downtime.  Three hours of stem cell extraction from 11:30 until 2:30.  We should be pleased to know they gathered 840 million stem cells that will be re-introduced back into my system Sunday.  Three hours and no bathroom breaks…ugh!  Wrapped up around 3pm and went downstairs for a Suzi made PBJ sandwich.  Back upstairs for our 3rd day of chemo from 4pm until 9pm.  Sheer boredom for Suzi and me!   Off to bed but final 5 hour chemo treatment tomorrow at 9am.  And the best is yet to come!!
  • Saturday, April 8th.  Day 13.  WHOO HOO!!  Just finished what is probably the most unpredictable part of this whole journey…my 4th day of a 5 hour chemo treatments.  Everyone in my group has gotten violently ill (I mean scary).  So far I’ve flown right through.  A little sour stomach this morning at 2:30am so I just stayed up and it went away.  A couple of days ago, after chemo, I thought I felt fine and were finally hungry and ate, and felt like total crap 30 minutes later. Feel great now, but that could change very quickly…welcome to 4 days of chemo.  The real problem is the PICC line the hospital put in Thursday.  Feels like a gunshot wound to the shoulder!   Stem cells tomorrow, PICC line out, then the 10 day bubble boy process begins!
  • Sunday, April 9th.  Day 14.   STEM CELL BIRTHDAY!!  The 5 of us in group 2 had our stem cells reintroduced into our bodies through our PICC lines.  We all celebrated as this completed a major milestone in our journeys!  Now we all wait for our immune systems to crater over the next two days and graft on to the new stem cells to rebuild an immune system free of MS.  We will be monitored, back to daily 7am stem cell shots combined with 5 blood draws over the next 10 mornings, and 5 consultations with the hematologist to confirm the system is “grafting” and rebuilding.  Just an FYI…the true recovery is one to five years!  My goal is to be an outlier!!  I’ll close with a comment about the PICC line.  Per the doctor who took the line out, it is a 7 1/2 inch tube that is inserted near your left chest/ shoulder and runs right into your heart.  We all have it for 4 days.  Its a gunshot wound and the majority of the 21 of us had huge pain issues with the PICC line.  It was also taken out today, with some weird / quick pain, but finally…sleep tonight!!
  • Monday, April 10th.  Day 15.  Finally!!  A mistake I made that went in our favor! No morning shot today, which means we could sleep in!!  Kind of…in bed at 10:30pm, up at 1am, then 2:30, then 3:30, and finally at 5:15am so I said “to hell with it” and went out into the den.  During our time here I am required to drink 2 to 3 liters of water per day.  Not only does it put you in a mood where you never want to eat, you’re up all night taking care of business…witness above.  My new world is dominated by cleanliness.  What I eat, what I touch, and daily clothe washing.  So now is a great time to recognize the most important person on my team:  My loving wife Suzi Kieval!!  If she is not bored of all of this and tired of me I would be shocked!  She deserves huge props for these things and more, which is why I love her!! :
    1. She does ALL of the laundry EVERY day!
    2. She found HSCT and encouraged me to do a deep dive review!
    3. She prepped the house and home for one month away plus my unique return!
    4. Suzi did all of the grocery shopping when we got here (and still does), and spends time making even this place comfortable!
    5. We eat home cooked meals here that would rival those at home!
    6. She goes to all of my events sometimes having to sit around and wait for 5+ hours while constantly offering support to me and others!
    7. I know I’ve overlooked many things that she does and this is why I love her!  She’s a great partner.  REACH OUT TO HER AND LET HER KNOW SHE IS DOING A GREAT JOB!!
  • Tuesday, April 11th.  Day 16.  This will be quick.  Shot at 7:00am and blood draw at 7:15am.  Piled into van with group 2 around noon to go visit the Hematology doctor to hear our results.   And…I’m there!  My white blood cell count has fallen out of bed and my immune system is compromised (Neutropenic stage…I’ll let you check that out on Google), which was the purpose of the chemo.  So its now time to sit in seclusion with Suzi while my stem cells “graft” to my minimal remaining immune system.  The objective will be for the stem cells and shots to help this happen…muy rapido!!  We have people come to the apartment many times during the day, everyone wears masks! More of the same coming for the next week!
  • Wednesday, April 12th.  Day 17th.  Yep it might be 8:30am but we’re kind of done for the day.  Shot at 7:15am then breakfast and no mas!  Suzi and I have prepared mightily for this downtime that started Sunday.  Before we left we bought Apple TV and sat with Amanda and Harrison to load enough material for watching that we would never be bored!  Material like The History Channel, HBO Now, AMC, TNT, and more!  One small problem…they all have muy, muy limited use in Mexico.  A good example is the History Channel.  There are thousands of shows and we can que them up to see what they’re all about, but only about 2 or 3 of 100 will be allowed to be shown in Mexico.  Initially, we got out a pen and paper and started catalouging each channel and what we could watch, then reached the conclusion “to hell with it!”  We do have full access to Netflix (we watch one or two movies per day and a couple of mini series), FOX news, and follow the Astros on the MLB Network that we bought for 1 month!  There it is!  Now you know what Suzi and I will be doing for the next 8 days!!!
  • Thursday, April 13th.  Day 18.  Once again, its 9:00am and we are kind of finished for the day.  Blood draw at 8:30 and Filgrastrim shot at 8:45am (I’ll let you look that one up).  It is the shot to stimulate stem cell growth.  Yesterday’s Filgrastrim shot took a record 30 seconds…which sucks!  Usually, I find something strange to focus on during the normal 15 second shot, but yesterday I made eye contact with Suzi.  She was also surprised with the duration of the shot and the 4 face contortions I made while the 4 stings and burns happened.  Today was much better and the normal 15 seconds with only 3 burns.  Later today we will pile into the van (same order) to visit the Hematologist.  Most likely they will confirm we are in the Neutropenic state, and with it a targeted diet.  Lets talk real quick.  When we hit neutropena, we were delivered a sealed plastic container with 84 meals to eat (breakfast, lunch, and dinner) from the Wise Company.  “Just Add Water, Ready to Eat in Minutes”, “Emergency Recommended / Extended Shelf Life”.  To me this is bunker food where when the bomb is dropped, will provide sustenance for 84 meals!  Also, the “Savory Stroganoff” has no beef (don’t get your hopes up!), but real beef flavor.  Because each package makes so much, even Suzi eats it.  Let me tell you all, if there is going to be Armageddon, Suzi and I can tell you what it will taste like and it ain’t that bad!!
  • Friday, April 14th.  Day 19.  WE ARE COMING DOWN THE HOME STRETCH!!  More of the same today.  Up at 6:40am and shot dude showed up about 8:20.  He had about 10 other people who needed blood draws, which they do first.  Only shot for us today.  Cathy the housecleaner was here at about 10:15a for the daily apartment cleaning.  She speaks no English.  I tried to wish her a Happy Good Friday in Spanish.  I knew I did a great job letting her know…she gave me an awkward smile.  Lets talk chemo.  My last chemo was about 6 days ago (April 8th), but it is the gift that just keeps on giving!  It lives somewhere inside you and is totally unpredictable.  Two days ago, I felt great all day long.  I went to bed at about 11:30pm and flew out of bed both at 1:30am and 3:00am to perform every function I could.  Same last night.  There is anxiety going to bed and you dread that moment when you throw the covers off to get “toilet busy”.  Everything that happens is always accompanied by a sour stomach in the middle of the night, that tends to stay with you for the morning.  Today has been 6 naps and a stomach that feels like there is an ongoing thunderstorm…but I felt pretty well and powered through 3 awesome neutropenic meals.  Now Netflix, then Astro’s.
  • Saturday, April 15th.  Day 20.  When I was a young child our family lived in a 2 bedroom apartment.  My brother and I shared a room and each had our own twin bed.  As I got bigger (Junior High School then High School) the twin bed got a little small but I was used to it and therefore it served its purpose.  When I went to college, I was treated to a full size bed as an upgrade, which served me well until I got married.  At that time it was time to splurge and upgrade…all the way to a queen bed.  Don’t call me spoiled, but after 5 or 6 years being married and sleeping in a queen sized bed, Suzi and I made a huge decision and upgraded to a king sized bed.   We made it!!! and we’ve been in a king bed for 25+ years.  When I meet with the Hematologist here he always asks how I’m sleeping.  Although I always respond “just fine” let me paint a picture of the truth.  I haven’t slept in a full size bed since college.  Here in Puebla, Suzi and I share a full size bed…and with no A/C.  I’ll let you figure out the truth about how I’m sleeping!  Up at 6:40am again, blood draw at 7:20am, then shot at 7:30am. Hematologist at 1pm.  More of the same!!
  • Sunday, April 16th.   Day 21.  So there was a little drama that played out in a positive way yesterday.  Between Friday, April 7th and Sunday, April 9th we were given 2 x 5 hour chemo sessions then reintroduction of our own stem cells.  As the Doctor finished the stem cell transplant, he made an urgent call that we would become Neutropenic either later Sunday the 9th or shortly thereafter.  Neutropenia is a reaction to chemo that reinforces that your immune system has been mainly eliminated (now comes the discussion of myoeblative vs. non-myoeblative.  Non-myoeblative destroy’s most of your immune system but leaves some for health reasons.  Myoeblative pretty much gets rid of the whole immune system.  Check google.)  Mexico and the majority of HSCT centers are non-myoeblative.  To be truly neutropenic your White Blood Cell count needs to fall below 4,000mcl.  On Tuesday morning the five of us in group 2, had blood draws then later met with the Hematologist.  All in my group came out of their meeting with low numbers…1,200mcl, 800mcl and around there.  Mine was 4010 which is technically not even neutropenic.  The doctor told me that I may have been neutropenic on Sunday night or Monday but either way we had another blood draw Thursday.  On Thursday it got even worse.  All of my teammates went in and got even lower numbers…800mcl, 500mcl and the same.  My WBC went up to 5,400.  I was nervous, Suzi was not, and the Doc reassured me this has happened before and that my numbers would crater on the next blood test Saturday.  Lots of tension for me between Thursday and Saturday.  Blood draw Saturday then we all went in for our numbers.  Once again they all came out with even lower WBC numbers..200mcl, 500mcl and around there.  Mine…800mcl!!!I cratered from 5,400mcl to 800mcl. I’m neutropenic and I’ve printed to prove it!
  • Monday, April 17th.  Day 22.  Same ‘ol day surrounded by great news.  Shot and blood this morning at 7:30am then the big doctor (Dr. Ruiz) at his office at noon.  Here is the good news…my WBC was 4600 which means I’m recovering!  Further, my final infusion was moved forward to Wednesday, and yes…flight out Thursday!   All good!  Now for observations:  Ever notice that when you are new to a relationship or situation, you tend to focus on the good?  When we got here on March 26th and got into our apartment for the first time we both said “this is great and we will make it work!”…and we did and have.  After a couple of weeks I looked at Suzi and said “If I lived here I would knock out that wall over there and put in a huge flat screen over there.”  Suzi said ” I would remodel the kitchen and get rid of those cabinets.”  Typical male / female observations.  When you get to the end of a relationship or situation there tends to be grousing and the bitter truth might spill out.  In our living room there are 1 aged chair, an aged recliner and an aged sofa.  We call the sofa “The Rambler Station Wagon”as you could lay down in it, the recliner “the Jeep Wagoneer” because its a little bigger and you can spread out, and the 3rd chair “The VW Beetle”as its a lot lower and smaller.  Every day Suzi ad I jockey for either the Rambler, VW Beetle, or the Wagoneer.  Being a good husband…she always wins!  Finally, this June we celebrate our 35th anniversary.  Unlike my previous observations above, even at 35 years every day is like day 1…I only see the good in Suzi!   I sure hope she reads my blog!  Tomorrow we have a quiz, so please be prepared!
  • Tuesday, April 18th.  Day 23.  What an easy day. No shots, no meetings with doctors, just work on my blog and Netflix! So here is the quiz: Since we have been here what is the most useful item we have acquired:
    1. Mouth Wash
    2. Ice Cream
    3. Empty Cardboard Box
    4. Heating Pad

    We could certainly make the case for any of these as they have been lifesavers, but the answer is…………….3. Empty Cardboard Box! Yep! The first day we got into the apartment we went grocery and miscellaneous shopping at Walmart. We came back to the apartment with several plastic bags of goods and other items in a Cardboard Box! When unpacked, I threw the box in the corner and started throwing trash into the box. Suzi stopped me…what a visionary. We turn the box on its side and its an end table. Straight on the ground it’s a coffee table. It serves as a table for our morning breakfast, coffee, lunch, and dinner too! During the day all of our channel changers sit there, as do our Ipads and chargers. I know we’re coming to an end. Wow!!! We are going to miss that box!

  • Wednesday, april 19th.  Day 24.  Final event today, 3 hour Rituximab injection!  Never been so excited for an IV and 3 hours of sitting.  Rituximab is used to clean up any random / bad “T” cells that may have been left behind.   Through all of the posts, it is important to all that we not lose sight of how great the staff and organization are here! They all have one common goal: make you comfortable and help you get to wherever you need or want to be. On March 27th when we checked in there was a smart phone fired up and populated with everyone’s phone numbers from doctors to drivers. We wanted another fan in our room, we called and a brand new fan were delivered immediately. Our group 2 dedicated driver took us to all of our appointments and stood by if any of us needed to go to the grocery store, dinner out, or more. We had a weekend off and he took the group to local restaurants and markets. If you got sick in the middle of the night…call the doctor on the pre-populated phone. If there were nothing scheduled for the day a nurse or someone would come by the apartment to see if you need anything. Thursday morning they come to our room, pick up our luggage, and take us to the airport. First class team and organization! Glad I came to Puebla Mexico for HSCT!!
Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s