Thursday, March 31, 2016

Day -9 (Mar 31) - Filgrastim injections start

Not too much to report for today.  Over the next several days, I will be receiving injections of Filgrastim which stimulates the production of stem cells in my bone marrow. I feel a bit nauseous and have been battling a pretty good headache but all is good and manageable at this point.  

The medication layout for the next few days is as follows:

Day -9

  • Filgrastim
  • Dexamethasone
  • Ondansetron
  • Pantoprazole


Day -8

  • Filgrastim
  • Dexamethasone
  • Ondansetron
  • Pantoprazole


Day -7

  • Filgrastim
  • Dexamethasone
  • Ondansetron
  • Pantoprazole


Day -6 will have an extra 3 medications, but I'll update later for those.  

Lauren will be going out with some of the group tomorrow to do some site seeing here in Puebla.  I will probably stay in as I am uncertain how things will progress for me tomorrow.  I hope the team has a great time.  

Be sure to post any questions you may have.

How about some Pictures

With everything that is going on, I thought it would be interesting to capture some photos to share.  I have recorded some videos, but I don't like them, so I probably won't post :-).

Group 1
The Clinica Ruiz team brings in several patients at one time and you are split into one of two groups. I am in Group 1, so most of the "group" photos will be with the smaller subset of people.  I'll try to grab some of everyone when possible.



This was during our first round of chemo.  You can see the patients are all sitting in the recliners while the carers are sitting next to their loved one.  In this group, from left to right, we have:


  • Patient: Fanny - Carer's: Patty / Shlomo (Fanny's husband not pictured but present) - Ft. Lauderdale, FL
  • Patient: Leslie (me) - Carer's: Scott & Lauren - US Kansas City, MO
  • Patient: Mike - Carer: Jake - US (Chicago?)
  • Patient: Norman - Carer: Hege - Norway
  • Patient: Michelle - Carer: John - US - New York
  • Patient: Ragesh - Carer: Bhatki - UK
  • Patient: Bill - Carer: Kelly -  US - Wisconsin
  • Patient: John - Carer: Brid - Ireland
I can tell you straight up that I'm in love with every person in this group.  It is so wonderful to be sharing this experience with them and to know that they understand every bit of what I am going through.  I envision everlasting friendships coming out of this experience to which I am already grateful. 


Shaving Ritual

We took tons of pictures, but I hated most of them, so have picked out only my favorites to share.  I'm still trying to get a handle on how I feel about this part.  I know I'm going to lose even more, so I guess I better just get used to it huh?


First up - Lauren

Prepping Lauren with at least 30 pony tail holders for easier cutting


















Cut and shaved but not perfected


















Voila - Transformation complete.  Lauren is now a young Anthony Michael Hall.


Next Up (Me) - I won't post too many here because they're horrible... but here goes

Lauren making the final cuts before the shave











I was contemplating keeping a kewpie curl


















Really really not sure how I'm feeling about all this.



and finally..  Scott

Just starting

For a while, it was a toss up whether Scott was to become a Mohawk Indian or join a Mexican Drug Cartel.


But in the end, his true colors came through when we found the horns :-)


So after all said and done, we had our showers, I put make up on for a little bit of a boost and we have the final results below.



 


Other interesting tidbits...

While we were here in Puebla, the Popocat├ępetl volcano was erupting and was visible from the roof of our apartments.  

MEXICO CITY, March 28 (UPI) -- Mexico's Popocat├ępetl volcano erupted over the weekend, spewing columns of ash up to a mile high.
The most significant of the low-intensity effects occurred on Saturday and Sunday. About 20 minutes worth of tremors were felt in the region, which is southeast of Mexico City.
Mexico's National Center for Disaster Prevention has warned nearby residents to avoid the area, adding that low-level to intermediate-level explosive activity is expected. Falling ash may affect nearby towns.
The volcano is in the states of Puebla and Morelos, 43 miles southeast of Mexico City.








Wednesday, March 30, 2016

Clinica Ruiz - Day -13 through Day -10

Well, my plan was to update this blog daily while we were here, but we have been through a whirlwind of activities and by the end of each day, I have been so exhausted that updating the blog didn't even cross my mind.   So, let me get you caught up.

Day -13:  Travel to Puebla, MX

  • We left Kansas City around 2:45 PM and had a layover in Houston.  We arrived in Puebla at 7:30 PM. They were an hour ahead of us which I found surprising as I thought they were CST.  This actually had me intrigued, so I looked up why their time was different.  Apparently, while Puebla is CST, their Daylight Savings Time starts on April 3 while ours started on March 13.  So now I know.
  • It is about a 30 minute drive from the airport to the apartments we are staying at. Our driver was Javier and he greeted us by holding a sign with my name on it at the airport.  Very nice man and he is also one of the guides (along with Chris) that are with you pretty much every day.  I'll talk more about the guides later.  They are indispensable.  KUDOS to Clinica Ruiz for hiring an amazing company to assist. 
  • The apartments are amazing.  They are fully furnished 2 bedroom / 2 bathroom security gated apartments. There is a washer and dryer in each unit, handicap bars in the main bathroom, a shower seat. You are greeted with a foodie basket which contains a few items such as instant coffee, creamer, peanuts, sweets, napkins, etc. Some things we wish we would've had as we were not able to get to the store quickly - more snacks, bottled water and trash bags. There is a reverse osmosis water filter here so drinking water is not an issue, but you are at the clinic for hours at a time, so having bottled water is a must.
  • Here are a few pictures of the apartment:
Dining Room

Shower/Bath

Kitchen

Living Room


Day -12: First "Official" day of HSCT Calendar (Mar 28)
We were picked up in front of the apartments by Chris at 9:00 AM and taken to Clinica Ruiz.  From there we had a series of activities which consumed quite a bit of the day and left me very tired.  I've added the list of activities below:
  • Clinica Ruiz Conference Room
    • Welcome - Greeting from all members of the Transfusion team.  
    • Explanation of the process and doubts - Dr. Guillermo Jose Ruiz Arguelles walked us through a PowerPoint slide explaining the different companies that were responsible and coordinated to getting us through the stem cell procedure.  There are 5 different companies.  I can't remember all, but some were Clinica Ruiz, the Blood Bank, the Logistics Company, Hematology, and I think the last was Hospital Angeles. 
    • Paperwork - MBA Manuel Ruiz.  Honestly - I can't remember going over any paperwork with Manuel, but I do remember Danielle walking us through our packet and showing us how things would work between groups 1 and 2.
  • Chemotherapy Room
    • Lab Tests - RN Laura Valle/ QFB Martin Ojeda / Dr. Monica Leon - Blood was drawn to perform series of tests to make sure we were suitable for the procedure.  For me - there are always problems getting good veins, so had to be stuck 3 different times. 
  • Hematology
    • Spirometry test - Dr. Danitza Fernandez.  Pulmonary function tests were ran to see how effective my lung capacity was... should've quit smoking years earlier.
  • Laboratorios Ruiz 
    • CXR - Dr. Jesus Zarain - Chest x-ray
  • NAP - we had about a 2 hour break so were escorted back to the apartments where I totally crashed.
  • Hospital Angeles
    • Consultation with cardiologist - Dr. Guerrero Pesqueira - Ran through family history of any heart issues, high blood pressure, etc.  Received the "thumbs up" from Dr. Pesqueira.
    • Consultation with neurologist - Dr. David Blumenkron - Spent about 20 minutes talking about inception of the disease along with current conditions. We walked through MRI scans and reports and had general discussion regarding my progression.  Received the "thumbs up" from Dr. Blumenkron. 
That finished up the first day ( or Day -12).  It was intense.  I walked back into the apartment and laid down - completely done for the day.

Day -11: First Day of Chemo (Mar 29)
  • Medical History - Dr. Andres Leon - We walked through my history again as well as talking about where I am currently.  I am currently in a relapse so I'm on steroids to help keep it controlled.  This is important for them to know as they are getting ready to treat me.  
  • Hematology consultation - Dr. G. Ruiz Arguelles.  This is where we sat with the "Big Guy" and walked through all the previous test results to get the final "OK" for starting the procedure.  It was a good discussion.  Dr. Ruiz explained why there was an upfront chemo need as well as the end.  He said that Cyclophosphamide serves two purposes - 1) helps stem cells move from the patient's bone marrow to the blood so they can be collected and stored  and 2) kill the immune system.  He also told me that with their evaluation my EDSS score is actually at about a 5.  My neurologist at home gave me a score of 3.5.  The EDSS score is subjective and depends on the day I think.  Some days I walk better than other days.  He was having me try to walk heel/toe and I really struggle with that right now.  
  • Intraveneous Cyclophosphamide (Chemotherapy) - Group 1 was put into the Chemo Room and administered their cocktails for the day.  I felt okay through most of it.  The first IV made me a little lethargic, but the second IV woke me up.  I had slight nausea, but not bad at all.  During this 5 hour IV procedure, I was given the following drugs:
    • Cyclophosphamide -is a medication mainly used in chemotherapy. It is an alkylating agent of the nitrogen mustard type. 
    • Dexamethasone -is a type of steroid medication 
    • Ondansetron is a medication used to prevent nausea and vomiting caused by cancer chemotherapy
    • Pantaprazoleis used for short-term treatment of erosive esophagitis associated with gastroesophageal reflux disease.
Day -10: Second Day of Chemo (Mar 30)
This was a repeat of the day before.  5 hours of IV drips - then back to the apartment

  • Intraveneous Cyclophosphamide (Chemotherapy) - Group 1 was put into the Chemo Room and administered their cocktails for the day.  I felt okay through most of it.  The first IV made me a little lethargic, but the second IV woke me up.  I had slight nausea, but not bad at all.  During this 5 hour IV procedure, I was given the following drugs:
    • Cyclophosphamide -is a medication mainly used in chemotherapy. It is an alkylating agent of the nitrogen mustard type. 
    • Dexamethasone -is a type of steroid medication 
    • Ondansetron -  is a medication used to prevent nausea and vomiting caused by cancer chemotherapy
    • Pantaprazole - is used for short-term treatment of erosive esophagitis associated with gastroesophageal reflux disease.
So Scott and Lauren have left to walk to the store for some groceries and when they get back, we will be performing the Shaving of the Head rituals.  I've tried and tried to talk both of them out of shaving their heads, but they're both adamant about going through with it.  So the next posts should be interesting to see the pictures we post of the ritual. I think I'll look horrendous.  I've been on steroids and now have the typical "Steroid Moon Face" and having a bald head on top of that will be just fabulous ... NOT!!  But oh well.. it is just a fat face and a bald head.  All is good!! 

STAY TUNED ....