Saturday, September 3, 2016

Day +146 (9/3/2016)

It's been too long since my last post.  My computer shot craps, and it's so hard to type all I want to type from my phone, so I waited.  Sorry for the delay.

Boy do I have some interesting things to talk about.  On August 17, 2016, I went to the Swedish Medical Center in Seattle to see Dr. James Bowen at the Multiple Sclerosis Center.  My local neurologist, Dr. Kosa, was pushing me to see him since this center specializes solely on MS.  Dr. Kosa thought it would be in my best interest to have a back-up plan in case HSCT didn't work for me. 

I've got to say that I'm so glad we decided to go.  Dr. Bowen is a huge proponent of stem cell transplant for MS.  He told me there were 3 types of stem cell treatments going on for MS patients right now.

1.  BEAM - Completely irradicates the patient's immune system
2.  HSCT - "Cools down" the patient's immune system, maybe indefinitely
3.  BUSULFAN - Riskier Canadian procedure - more intensive than the BEAM process, and has a higher rate of mortality (1 in 20)

We asked him which procedure he would've opted for if he had MS, to which he said BEAM.  With that said, he told me that their facility requires $450,000 for the deposit.  The procedure itself usually ends up being $150,000, so you get a chunk of the money back.  For us, asking for $450,000 is about the same as asking for 1 BILLION dollars.  There is no way I could get that kind of money. So with BEAM not even being an option, we focused the rest of the conversation on HSCT and what that meant to us.  

He said that he liked HSCT and was familiar with the Mexican protocol.  The problem with HSCT in his opinion is that you are not sure how long it will last.  It is possible for it to hold MS at bay indefinitely, but not always.  

We told him that we were staying on plan with the Rituximab follow-ups every other month for a year.  This is where it got very interesting.  He said there is a new drug that is going through final FDA approvals (he's estimating November) that is for MS patients.  It's called Ocnelizumab.  He stated it was similar to Rituximab, but completely human based.  Rituximab is part human, part mouse and that is why people get the negative reactions (ie - throat closing, itching, hives, etc). Ocnelizumab, like Rituximab goes after the radical B cells that cause MS flare-ups.  

He said that my plan should be to get a monthly CD19 blood test and if it is positive get an Ocnelizumab infusion.  CD19 is a B Cell marker that they know is a bad deal for people with MS. 

I asked the question - So, I shouldn't have ANY B-Cells?  The answer was - If you have any B Cells, you need to get the infusion.  Scott asked if the infusion would keep the MS controlled, and Dr. Bowen said it could  - indefinitely.  

So, we have a plan.  This was very encouraging!  I loved hearing the word INDEFINITELY!!
















Myelin Repair

We talked about Myelin repairing options.  The biggest one in trial now is ANTI-LINGO-1.  He said they had seen good results with eye issues, but still very unknown about other MS issues.  He thought this was because they had a good way to measure eye improvements, where as other issues are harder to measure.  There is no timeline set on FDA approvals.  On the same note of approvals, I asked if he thought stem cell transplant for MS would get approved so insurance would cover it. In his opinion, he didn't see this happening.  He said - insurance companies have their drugs, why would they push for it? 


Other notes:

I had my 3rd dose of Rituximab on Aug 22.  I was joined by my fellow warrior Deb Lee and her husband Joel.  It was great seeing them.  I had purchased the Hydrocortisone in Mexico to go alongside the Rituximab, so I didn't have any issues there.  

As for improvements, I feel about the same as the last post.  Still having cognitive issues, some heat intolerance, walking issues after a while, fatigue.  With that said - if we've stopped this beast, I will be ok.  I feel blessed to have had this opportunity. 

I hope this information has helped and look forward to talking to others about their progress. 

Oh - final update.  I asked Dr. Bowen if it's okay to do HSCT again if needed.  He said yes - it would not be an issue to have it multiple times.





Saturday, July 30, 2016

Day +120 (July 30, 2016)

Yesterday I went for my 3 month post HSCT check up with my local neurologist, Dr. Kosa, to discuss my MRI that I had 2 days earlier. The last few weeks have been a little troublesome for me as some of my old symptoms have crept back in and sometimes even appear to be a bit worse (see post Day +100). For the most part, I have kept a positive attitude as I've been told from the beginning that recovery would be a roller-coaster.  I had been telling myself that my MRI would look good, but had twinges of doubt since I've been experiencing some of those old issues again.  


I tell you - it was such a relief when Dr. Kosa said that my MRI looked stable and that I had NO ACTIVE lesions.  This was the first doctor/hospital visit in the year & a half since my diagnosis that came back with the word STABLE!  What an awesome feeling.

As for the issues that I'm still seeing, they may always be there, but as long as we've stopped the progression, I can handle it!  

We've always been told you will not see the full benefit of HSCT for two years. It's only been three months and time will tell the full story. 



Someone else posted the following image in the Facebook HSCT group, but I'm going to add it here and also in my Clinica Ruiz HSCT page.  I think it paints a good picture of the timeline and is very helpful.  Let me know what you all think.
Source: A. Arthur Fisher






Wednesday, July 20, 2016

Day +100 (July 20, 2016)

It's been quite a while since my last post, but truthfully, it has been fairly uneventful. Frequent posts would have been quite boring for everyone.  :-)

Today is Day +100 since my stem cell transplant.  Fortunately for me, I have tolerated it fairly well with minimal issues.  One issue I did have was I contracted conjunctivitis  (pink eye). I was letting my guard down too much and put myself at risk by being in crowded areas, not wearing my mask, etc.  Lesson learned. With that said, I saw having pink-eye as a good sign that the HSCT procedure was working.  I had not been sick in years because my immune system was in over-drive, and it appears that now it's not.  


May 10 vs July 10

I was looking back on my last post from May 10 and thought I'd update where I am now compared to then.

  • Vision
    • May 10 - Much better
    • July 10 - Still good
  • Fatigue
    • May 10 - Better
    • July 10 - Experiencing some issues over the past month or so.  Not as good as it was in May
  • Heat Intolerance
    • May 10 - Gone away
    • July 10 - It's back.  I will just be sitting and all of a sudden my face/neck will turn bright red and I have to get to a fan or in a cold shower fairly quickly. I can't be outdoors very long. This is disappointing. 
  • Walking
    • May 10 - No improvement
    • July 10 - Some improvement.  I'm able to take the dogs for a short walk SOMETIMES without feeling my legs getting heavy...  but then sometimes they still do get heavy and slow.  
  • Urinary Frequency
    • May 10 - No improvement
    • July 10 - No improvement
  • Numbness/Tingling
    • May 10 - Slight improvement
    • July 10 - Seems the same.  I am still feeling the tingling/numbness mostly in my hands but not all the time.
  • Brain Fog 
    • May 10 - Comes & Goes
    • July 10 - I'm not seeing much improvement over May 10 which is tough for me. If I focus hard on anything, I get brain fog pretty bad.  It feels like my brain is heavy and it's hard to explain, but it feels like swimming motions in my head. Since I'm not working, I decided to start drawing again to keep myself entertained. Even this activity caused brain fog issues.
While I'm seeing some slippage in areas, I'm still not discouraged.  Previously, one of the biggest clues that I was on the decline, was the inflammation in my eyes would come on strong causing me to start losing my vision FAST.  I used to have to take Azathioprine (Imuran) daily to keep the eye inflammation down. Today I am not on ANY drugs whatsoever and my vision is as good as it can be. I have quite a bit of scar tissue in my eyes, so it will never be perfect. 

Follow-Up Rituximab Infusions 

I went back to Mexico in June to receive my Rituximab infusion.  I tried to get it done here in the states, but my insurance denied and it would've cost between 12 to 14 thousand per infusion.  In total I need 6 infusions.  So, we packed up and went back to Mexico to receive my 2nd infusion.  The first was given at the end of my HSCT treatment. From there, I brought the Rituximab and the Hydrocortisone for the next 4 doses back with me as I have found a nurse that is willing to give me the infusions at my home. One thing that was causing me a lot of stress was the fact that you have to have a medical license to buy Saline solution in the US. I had no idea!  I am shocked you need a license to buy salt water.. unbelievable. My suggestion for anyone bringing back the drugs to the states to do the infusions themselves, get Clinica Ruiz to include the Saline and write it on the prescription documents to avoid running into issues. 

What's Next

My local neurologist, Dr. Kosa, whom I love, is really pushing me to go to see Dr. Bowen, a MS specialist in Seattle. I was confused by the push to see this other doctor, but Dr. Kosa stated that he thought I should come up with a back up plan in case the HSCT procedure does not work. He said that he was very impressed with Dr. Bowen, who was involved in some of the original HSCT trials years ago and apparently travels all over the country talking about the newest MS procedures/drugs/possibilities. Dr. Kosa said he had talked to Dr. Bowen about me and that he was very familiar with the Clinica Ruiz protocol. I'm fairly impressed that my neurologist has NO EGO issues whatsoever and is really looking out for my best interest. I have an appointment in mid August in Seattle and will update everyone with "the plan".

Final thoughts

George Goss has a great image to help people understand what the HSCT recovery period is like. His image is actually better than what I have here, but I couldn't find it. The concept is the same - you have ups and downs through the journey, but be patient. I need to always remember that my recovery will take up to 2 years and that the goal of HSCT is to STOP the disease. Any added improvements are a BONUS!!


 Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

Tuesday, May 10, 2016

Day +30 (May 10) ... 1 month since transplant

Well, it's been 30 days since my HSCT stemmie birthday.  Overall, I'm feeling pretty good. 

The positives for me so far are as follows:

  • Vision is much better.  About 2 weeks before HSCT procedure, I was quickly losing my vision again.  I went to the neurologist and he put me on steroids but asked me to see my retina specialist.  My retina specialist indeed found inflammation in both of my eyes again.  He felt I'd be okay on the steroids prescribed by the neurologist until I had the procedure.
  • Fatigue is better (most of the time).  I've noticed that I'm staying up much later than before.  I feel like I used to be in bed by around 9 PM (at the latest), and now I'm up to 11 or so.
  • Heat Intolerance - this has gone away.  If anything, I seem to be cold now.  I used to need a fan blowing on me at all times.
  • I seem to feel better in general.  
Areas of minimal or no improvement:
  • I do not think I'm seeing any improvement in walking yet.  For me, I start out each day pretty good, but as the day wears on (or when I've been walking more than normal), I can feel that dreaded heaviness in my legs.  On my bad days, I really start slowing down and my legs start crossing when I walk or I get foot drag (or both).  All that is still there.  I went to see my son at his ballgame and from the ball field to the parking lot, my walking deteriorated so much I could barely walk.  My left foot was dragging and I was very slow.  It was probably the worst it has ever been.  I guess the good part about this problem is that there is no pain and that after I rest for quite a while, I seem to get full mobility back (at least for a while).  
  • My brain fog comes and goes.  I helped my daughter study for her college exam and the whole next day I seemed to have issues with brain fog. As before HSCT, the more I work my brain, the more issues I have with the fogginess.  When I have a day of not using it much, I seem to be okay.  Hoping that will clear up because it's quite frightening for me and I need to use my brain and keep sharp. 
  • I still seem to have urinary frequency and urgency, but it is manageable (as long as I'm close to a restroom).
  • Numbness/tingling in hands and feet.  This may be a little better, but I'm still noticing it, especially in my hands. 
I know this is a process and I may not see the full benefits for up to 2 years, so I'm not discouraged at all.  I just want to keep track of where things are and share it across with anyone that's interested.

My hair didn't fall out like I expected.  I had shaved my head, but as the stubble has grown back, I keep waiting for it to fall out.  That's not happening.  I THINK I see two spots that look thinner/patchy - but not bad. I am seeing a lot more gray coming in now than when Scott shaved it. We probably shouldn't have shaved my head, but was told that at such a high dosage of chemo, it was guaranteed to fall out.  ...Hmmmm...  I wonder if it's still possible that I will lose it after a month?  Thoughts?  Maybe some people with chemo experience or health professionals can give their feedback in the comments section.

I'm staying inside for the most part.  I'm taking this very seriously and doing everything I can not to jeopardize my health.  When I do go out, I wear my mask and take my hand sanitizer with me.  With that said - I'm pretty bored but that's okay.  I'll take it.

Scott is back to work and I think he's happy about that.  He too was pretty bored spending all that time inside not doing anything.  We came home to some major plumbing issues and I know he's already tired of dealing with that!!!  Poor guy.  There doesn't seem to be a break for him.  One positive, his back seems to be much better.  We were pretty worried as while we were in Mexico he was having a lot of pain still from his back surgery, but it lightened up and he's doing much better.  

To finish up my Day +30 post, I'll leave you with a poem written by Morgan (mgcpd)....

I saw this poem on Google images and thought I'd share.  I found this to be a true statement for some of my issues that come and go and felt it may help some people understand MS in a humorous way.  The original blog has been removed, so I don't how to give the appropriate credit or ask permission to re-post.  So Morgan, if you read this, and have issues with me posting, just let me know and I'll remove.  


Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS




Thursday, April 21, 2016

Day +11 (Apr 21)



Scott & I after placing our pin in the HSCT world map.  We're Done!!

Yesterday (Day 10) - part of the group went through the final stage of the transplant.  We received our Rituximab (Rituxan) IV.  Clinica Ruiz uses Rituximab as a booster to the chemo previously given.  


How does it work?

Rituximab is a monoclonal antibody. It has been used to treat certain types of blood cancer (leukaemia and lymphomas) for several years.
Rituximab works by targeting a certain type of immune cell known as a B cell. B cells are thought to contribute to myelin damage in MS, by reducing the number of B cells rituximab may reduce myelin damage in MS. 
So, in a nutshell, the thought is that any nasty mature B cells not caught by the chemo will be handled with these booster infusions.  I will have 5 more infusions every other month for the year.  

My side effects
For me, and some others, there was some reactions to the drug.  My throat felt like it was starting to swell and close up.  My neck, throat, and head were very itchy and I also felt very congested which brought on coughing and sneezing.  The injected Cortisone into my IV, which helped a lot, but still felt the congestion for most of the day.  I became very sleepy and slept through a bit of the 3 hour infusion.  Once we got home, I tried to attend a small get together, but wasn't feeling well, so came to the apartment and slept and slept and slept. 
I feel better this morning, but still not great.  I noticed some tingling in my hands which I hadn't felt for more than a week and I have a killer headache, so just a little off.

What's Next
As far as Clinica Ruiz is concerned, we are done here.  We leave to come home on 4/23 and I can't wait.  I'm very homesick and extremely bored.  I have a packet of info to give to my local neurologist and will follow up with next steps in the States.
Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

Friday, April 15, 2016

Day +5 (Apr 15)

Not a ton to report.  I did have an issue with my blood pressure on day +1.  That whole day I felt off, and Scott decided to check my blood pressure, which was too low. Throughout the day, it just kept dropping.  He ended up calling the doctor when it hit 91/46.  The doctors were quick and thought I was probably dehydrated.  I felt I had been drinking enough water, but definitely not the 3L I was supposed to drink.  So I got out of bed and drank 2 liters of water within about 45 minutes.  The doctor was right - my blood pressure started to rise.  I was happy, because the next step would've been hospitalization which none of us wanted.  At midnight, Paco was knocking at the door to deliver Electrolyte drinks.  I am still impressed at the service and attention we are receiving here.

Since then, I've been drinking soooo much water to make sure it doesn't happen again, and the lowest it's gotten down to since is 99/55.  While that is still low, it's not too bad and I'm keeping an eye on it.

I go back to the clinic today to get my every other day consultation from my blood work. I'm a bit concerned.  I do not feel my WBC count is low enough and I haven't hit the neutropenic stage. Actually, my WBC count was up 2 days ago from the previous measure. I think I just need more education here.  I had thought that the goal, was to pretty much eradicate those numbers.  I will talk to the doctor more today if they are still so high.

Today's Post Consultation Update:  WBC dropped from 13000 to 2300, so I am feeling much better. The process is working.  It's just taking me a little longer than some others.  Dr. Ruiz said I was definitely going Neutropenic and expected my levels to drop some more.  He said I need to keep taking the Filgrastrim shots to keep stabilized.  It's fun to watch the senior Dr. Ruiz at work.  He is definitely the godfather of the team.  His staff hangs on to every word and seems to follow him around, listening and learning.  Love it!!

Oh - Scott & I designed my new FB profile picture.  I think we're going to get t-shirts made too. What do you think?

Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

Sunday, April 10, 2016

Day 0 - (4/10) My New Birthday

Today is my new birthday.  My stem cell transplant happened today around 2:00 to 2:30. My total stem cell count was 151 Million (46 from round 1 and 105 from round 2).  They wanted me to have at least 75 million, so I way exceeded that number.  I feel really good today.  I think it may be a bit of an adrenaline kick knowing that today is the day.  

Below are some photos we took to celebrate the day.


Posing with Dr. Manuel Priesca and Dr. Andres Leon

Thumbs up with Nurse Laura

Gangsta's in the Chemo Room

4/10/16 Birthday Crew - Julie Miller, Bill Anderson, Deb Lee, Me, Norman Kulø  

Dr. Priesca, Julie Miller, Bill Anderson, Deb Lee, Me, Norman Kulø, Dr. Leon


We did it!!!!!

Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS

Saturday, April 9, 2016

Day -1 (Apr 9)

It's been a few tough days.  I haven't updated, but will try to catch you up now.



  • April 5, 2016 - I was taken to Puebla Hospital in order to have the catheter (PIC Line) surgery. Afterwards, I went through a short recovery and then taken back to the apartment to rest. 
PIC Line
  • April 6, 2016 - We stayed in the apartments to rest from the surgery.  Pretty non-eventful.
    Apheresis Machine
  • April 7, 2016 - Cell Harvesting day.  We were driven back to Clinica Ruiz and hooked up to the apheresis machine.  I was selected to be placed on a new machine, where there were two instructors guiding the doctors through the process, so I was surrounded by a lot of people throughout the whole process.  After a few hours, they sent me away to have lunch while they counted my stem cells.  If I had enough, I would start chemo right after, but I was about 30 million short of where I needed to be. I was given another Filgrastim shot and sent back to the apartment.  I was initially pretty upset as everyone in Group 1A had gotten their needed cells, except me.  I had to have a talk with myself stating I was going to be okay and my turn would come soon.  Soon after, I received a call from Bhakti (Ragesh's wife) stating that none of Group 1B had gotten to their numbers, so we were all going through the same. 


My Stem Cells
  • April 8, 2016 - Cell Harvesting Day 2.  I was again hooked up to an apheresis machine, but one of the tubes from my PIC line was not working.  The doctor had to remove my stitches in order to slightly adjust the PIC line and get the blood flowing.  It worked for a while, but was very slow.  By removing my stitches, it would mean that they would have to completely remove the PIC line after chemo that day as it would be unsafe to continue with it like that any longer.  However, about an hour into the apheresis process, I experienced a sharp pain in my chest and could feel a warm wet feeling. I looked down and saw blood soaking my shirt.  The doctor was very close by and was able to get it under control, but what this meant was that the PIC line was blown and had to be removed right then. He was able to insert catheters into both of my arms and route the apheresis that way. Definitely not ideal, but it worked.  After lunch, Nurse Laura came in with my chemo, so I knew I was good to go.  I ended up with 105 million stem cells... YAY -  We sat there for another 5 hours while I received my chemo (round 3).



  • April 9, 2016 - Last Day of Chemo (round 4).  Got very nauseous today, but Scott & I did share some M&M's earlier.  I haven't eaten chocolate for about a year, so it was probably a bad decision to try to mix my chemo with M&Ms.  


Tomorrow will be my new birthday.  April 10, 2016.  Wish me luck





Monday, April 4, 2016

Day -5 (Apr 4) Update

I haven't updated the blog for the past few days really because there wasn't much to update. We have been receiving our Filgrastim shots twice per day to stimulate stem cell production. I've been waking up with some pretty intense headaches and seem to have nausea on and off, but overall, this is not bad at all.

Lauren went home on Saturday morning. On Friday, she went with some of the team to see parts of Puebla (pictures below). Looks like she had fun. Thanks to Fanny, Shlomo, Chris and Patti for letting her tag along. I wasn't feeling well, so Scott & I stayed in.


 

 

Saturday - Most of group 2 went to the rooftop of the apartments where we have a fantastic view of the volcano Popocatepetl. Some of Bill's friends live in Mexico and came by to say hi to everyone and we were even entertained by David who played the hang drum for us.  All in all, it was a very nice time with my new friends.  


Ragesh & Fanny


John & Norman

Scott & Brid
Norman & Hege

















Bhakti took some exquisite photos of Popo that she has generously said I could re-post. 


Drug update for yesterday and the next few days.  

Day -6
  • Filgrastim: A granulocyte colony-stimulating factor analog used to stimulate the proliferation and differentiation of granulocytes; it is a pharmaceutical analog of naturally occurring G-CSF. It is produced by recombinant DNA technology.
  • Dexamethasone: A type of steroid medication.
  • Ondansetron: Marketed under the brand name Zofran, is a medication used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy, or surgery
  • Pantoprazole: Sold under the brand name Protonix among others, is used for short-term treatment of erosive esophagitis associated with gastroesophageal reflux disease
  • Itraconazole: A triazole antifungal agent prescribed to patients with fungal infections. 
  • Trimetoprim/Sulfametoxazol: An antibiotic used mainly in the treatment of bladder infections. 
  • AcyclovirAn antiviral medication. 

Day -5 and Day-4 are a repeat of Day -6 less the Dexamethasone

Tomorrow I will get the catheter placed in my neck in order to prep for the apheresis (cell harvesting).  Not looking forward to that, but apparently it will be under local anesthesia which is good.  

Well, that's about it.  I'll probably update after my catheter placement.  We'll see how it goes.



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 Popocatépetl volcano was erupting and was visible from the roof of our apartments.  

MEXICO CITY, March 28 (UPI) -- Mexico's Popocatépetl 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 ....