Wednesday, April 9, 2014

One year ago....

 It's been one year since Ria and I arrived in the USA!  Here I am, one year later.
Can you tell what my favorite color is?

The memories from a year ago are still so clear.
* March 31, 2013 - Ria reads the report that I'll never forget:
Diffuse marrow signal abnormalities in the pelvic bones and bilateral proximal femurs... Correlation with clinical findings and other dignostic modalities (e.g. bone scan) is advised. Possible Multiple Myeloma, Leukemia or Lymphoma.
 * April 1, 2013 - Dra Ona (oncologist) tells us to go to Mayo Clinic as soon as possible.  I contact Mayo Clinic that day to get an appointment set up.
* April 1, 2013 - We told the kids "Daddy may have cancer, we have to go to the USA".
* April 5, 2013 - Luis and Nadya leave for CISV camp.  I had no idea when I would see them again.
* April 5 - I say goodbye to my Global Sources Manila team, telling them that I need to go on emergency medical leave and that I'll be gone indefinitely.  I tell them that I'll return someday.
* April 6 - We have a despedida dinner/mass with my Estrella/Sanchez family.  I tell them that whatever cancer this is, it's picked a fight with the wrong person.
* April 7 - We have a despedida lunch/mass with the Mojicas.  I receive the Sacrament of Anointing of the Sick.
* Same evening - Dinner with the Maningats/Luceros.  I'm so weak and I can't eat anymore.  I hadn't packed yet.  I throw some clothes on top of my luggage and then fall asleep.
* April 8, 4am - I wake up and find my luggage packed.  For the 2nd time ever, Ria packed my bags for me.  Bianca rides with us to the airport in her pajamas and with Tita Trinna.  I hug Bianca and tell her I'll see her soon. 
* April 8, 8am - For 1st time ever, I ride in a wheelchair at MNL airport.  I could barely walk.  I ride in a wheelchair during the layover in NRT.  From NRT-MSP, I flew business class.  Despite the lie-flat seats, i was so uncomfortable and in major pain.  I couldn't eat, even though b-class food looked really good.  I couldn't sleep.  End up watching most of Season 2 of Game of Thrones.
* April 8, 1130am - Arrived in MSP.  I can barely walk down the air bridge to immigration.  We can't find our luggage.  Realize that it was offloaded from the carousel earlier so it was sitting on the side.
Ria lifts everything, all four luggages.  I see my parents outside of immigration and customs.  I'm totally exhausted.  I see my dad's face and the look of shock.  Being a dad, I think I would have felt the same way if I saw my son looking this awful.  I walk so slowly that even my mom (bad knees, back, arthritis and all) leaves me behind.  I had this strange feeling that after all these years, at age 44, my parents have taken up their former roles and are back to taking care of me.  Once a parent, always a parent.   

Our lives had suddenly turned upside down.  The journey had begun, one short year ago today.  No need to rehash 50+ blog postings (you can see them all here), but I'll share with all what has happened in the past 2 months.

One month ago, 1st week of March '14, I went back to Mayo Clinic for my 100 day checkup.  Here's a summary of the results:
* I'm cancer-free, no signs of multiple myeloma and amyloidosis
* All my immunity is on track and coming back to normal.  In most cases, bone marrow transplant patients need to be on antibiotics for one full year.  Dr. Gertz (my oncologist who I can't say enough good things about) takes me off of all of the antibiotics saying I don't need them.  After months of sometimes taking 13 medications a day, I'm down to a simple antiviral (Acyclovir) each day.  
* All my test scores, hemoglobin, white blood cell counts, platelets, etc.. were normal or very close to normal (and improving)
* Kidney function, liver function, heart function are all either back to normal or near normal and soon to get normal.
* Excerpts from Dr. Gertz's report:
"His stamina has returned completely"
"Reflexes are brisk in all four extremities"
"Heart has regular rate and rhythm"

I may not have shared this in past posts but due to the cancer/chemo treatments/transplant, some things had been affected, i.e,
* I stopped sweating.  I.e., I didn't sweat from March last year throughout the rest of 2013.  My sweat glands had apparently been affected by either the amyloidosis, the chemo, or both.
* My feet were affected by the chemo.  From my ankles down, my feet felt they had novocaine in them.  I couldn't feel them.  Chemo treatments sometimes affect the nerve endings in your feet.
* As you may have seen in photos, I lost my hair on my head from the chemo.  No surprise there but I also lost the hair on my arms, legs, everywhere else except my eyebrows. Just a reminder as to how I look with no hair, here is another photo!

Christmas '13 photo of me with my hot girlfriend!

What's happened since?
* I'm running/biking 30-45 minutes every day now.  And yes, I'm sweating again.  Yes, I use deodorant now (again)!
* I was walking in my bedroom in the dark the other night and I stubbed my toe on the bed frame.  I'm writhing in pain but laughing at the same time.  Ria says "What's wrong?".  I tell her "Wow, I can feel my feet again!!"
* The hair on my arms and legs are coming back and the hair on my head is almost back to normal, except, it's thicker and for whatever reason, my hairline is lower! 

I still need to stay vigilant.  Multiple Myeloma and Amyloidosis can come back.  I have to get my blood checked every 3 months and back to Mayo Clinic every 6 months for a full checkup.

But, through it all, our upside down lives couldn't be better.  Cases in point, other, important things have happened (that are totally not cancer related):

* Nadya finished 2nd in the city spelling bee (WOW!)
* Luis was on the A honor roll at BSM for the 1st semester
* Bianca was top of her homeroom class for spelling and will soon have her 1st communion

Ria and I know there's some reason for all of this happening in the past year.  Not really sure what it is.  We can't be more thankful, to God, our wonderful, super flexible kids Luis, Nadya and Bianca, my parents, Ria's mom, my brother Mike and his family, my cousin (and cardiologist) Ruffy, Bernadette & family, my internist and sister-in-law Trinna, Ria's brothers and sisters,  my dad's bible study group, my mom's prayer group, our Estrella, Sanchez, Mojica, Maningat/Lucero families, my best friend John, his wife Laura, Steve & Chris and their families, my Global Sources family and friends, my Thunderbird, Notre Dame and BSM friends (thanks Christine!), Laura and John A., our close family friends, the Balcoses, Sees, Pietruses, Asuncions, Romeros, Jaojocos,  my tennis buddies, my team from Mayo Clinic, my team from Park Nicollet, DaVita, I can't name everyone.  Thank you!

Since videos seem to get lots of interest, I'll post two Youtube videos here that relate to our experience in the past year. 

1) The first one is from Queen.  I want to emphasize the "WE" in this song. I couldn't have won this 1st battle with cancer without all of you, thus "WE are the..."

2) The 2nd video is from Lea Salonga.  Have a look at the lyrics, they're really relevant to what has happened in the past year, and the road that lies ahead.

 Thank you so much all!

Armando (Buddy) and Ria

Monday, January 27, 2014

A Long Overdue Merry Christmas and Happy New Year!

If you're still visiting our blog, thank you so much for checking on us.  We are all doing very well.

Bud was sent home from Mayo Clinic on Dec 2, Day +18 -- and he continues to beat the odds to this day.  We were just in time to rescue our parents from our kids who were already driving them crazy and for the 1st batch of snow that arrived on Dec 4.

And here is our Christmas card which we sent or are sending (sorry for the delay) out...

And here are some photos from our 1st Christmas here in our new home...

Thank you to all of you who have been on this roller coaster ride with us.  If you even just gave us a thought or said a short prayer, "Thank You" from the bottom of our hearts!  With your prayers and God's Grace, Buddy is now cancer-free!  

He continues to regain his strength and jogs outdoors for 20 min/day barring -40 windchills (while I am trying out a new diet as I gained back all the weight I lost at the start of this journey)...he's always been much better at this exercising thing than me.  The kids are all doing very well in school and have adjusted so well that they don't want to live any place else where it doesn't snow.

At the beginning of last year we had planned a big family trip to Boracay where the Mojicas from the US would fly to the Philippines and celebrate the New Year there.  Well, circumstances beyond our control prevented us from making that trip, but they pushed through.  So they created this video for us.

Team Buddy from Rissa Sanchez Murga on Vimeo.

With this team behind us and many more of you not in the photo, how can we ever lose?

And just in case you still have 20 minutes of free time, here is our 2013 in photos...

Mojica 2013 from Ria Maningat Mojica on Vimeo.

Thank you so much and here's to a happier and healthier 2014!

Buddy & Ria

Friday, November 29, 2013

The Best Thanksgiving ever

November 29, 2013 - Day 15

The kids, my parents and mom-in-law came in on Wednesday to join us here in Rochester.  We would spend Thanksgiving together!  So much to be thankful for and wonderful to have the whole family together. 

Yesterday, Thanksgiving day morning, we were at Mayo Clinic.  My parents came with me instead of Ria as she watched over the kids. Dr. Gertz came in and said "I'm confident you can go home on Monday (Dec. 2)".  He also said "You're an overachiever".  Wow, that's 10 days ahead of schedule.  What a thanksgiving day gift!  My numbers are up again.  My neutrophil count is well in the safe range and my platelet count is almost there.  See graphs below.  When they're pointing upward, you can see the progress! 

Ria and can't be more thankful.  As it's Thanksgiving Day here in the USA, we had the traditional turkey dinner which we ordered out from a great local restaurant (Canadian Honker).  We gave thanks for:

* My parents, for being the kids' drivers as of late, and for being there when we needed them the most in April and May, when we were in serious trouble.
* My mother-in-law, for taking care of the kids for the past month, otherwise, we wouldn't have been able to do the transplant
* Our wonderful children, who got transplanted from the Philippines to the USA on a moment's notice, and have adjusted fantastically to life here
* My brother Mike and his family. Mike has helped so much throughout this year.  
* Our extended family worldwide, who have given endless prayers and support.  There's no way we could have made it this far without them. They're too many to mention but you all know who you are!
*  Our friends here and worldwide who have also provided their prayers and support.  Special thanks to Claudith!
* My best friends John and Steve and their families.  I can't say enough of what they've done for us.
* My very supportive company, Global Sources
* My wife Ria.  I wouldn't have made it without her.

And of course, I gave thanks for being alive. Not only am I alive, I feel great!

Traditional turkey dinner with mashed potatoes, stuffing, corn and rice! Plus pie overload -- apple, pecan and pumpkin with cream, plus Bunnies coconut cake.

8 months ago, I said "Whatever cancer this is, it doesn't know who it is up against.  It's picked a fight with the wrong person".  I've said it before, but the cancer wasn't up against me, it took on a whole army of prayer warriors, my friends, my family, my wife, and me.  We've won for now!

It's a fantastic feeling to know I'm cancer free.  There's no guarantee that it won't come back, we'll always be monitoring.  But, I'm back!

I haven't posted a video in awhile so I wanted to give a link to one of my favorite songs.  In celebration for being back, and since it is "Black Friday", this song fits.  Note, it's a little loud!

Happy Thanksgiving to all!
Buddy & Ria

Tuesday, November 26, 2013

Day 12 - "Engrafting"

Tuesday, November 26 - Day 12

For Stem Cell Transplant patients, the days you look forward to is the process of "engrafting" of your stem cells.  In simplified terms, this is when your stem cells start growing red and white blood cells.  It's also when your body feels much better after feeling beyond horrible on Days 6-8.  The first sign of engrafting is when your blood test results start moving upwards.

Yesterday, Day 11, we saw a blip that my results were starting to go up after bottoming out.  Today, continued improvements.  I know many of you are not physicians or nurses but you can read graphs.  Where you see the graphs going up, the results are moving in the right direction.  The only one which looks a little funny is the Neutrophils result.  Reason for no graph is that for the past week, the # of neutrophils has been zero (too few to count) and today it is at 0.15. You can see the numbers are all in red, meaning they are not yet within the normal levels, but going where we want them to.

Dr. Gertz said that since we live so close to Mayo (less than 2 hrs drive), he is willing to send us home the moment that my Neutrophils hit 0.5 and my Platelets are at 50 (currently at 20), and continue daily monitoring from home. Wow!

IT"S WORKING!!!!!  I'm feeling better every day.  All I can say is that we are so grateful.  We see the light at the end of the tunnel!  Thank you all for the continued prayers.

Buddy & Ria

Friday, November 22, 2013

Days 6-7-8

Friday, Nov. 22

It's a level of fatigue that I can't describe, only that I have instances where I can barely hold myself upright.  Walking even 10 meters is not exactly easy.  After taking a shower, I feel like I've done a 400 meter sprint.    The fatigue comes from my neutrophils (white blood cell count) dropping almost to zero by day 7.  I'm walking and talking in slow motion. 

The doctors needed to run some further tests as I came up with a fever (neutropenic fever, caused by the Chemo).  They want to make sure I don't have any form of infection.  So yesterday, they took a chest x-ray (negative), blood cultures also haven't shown anything yet.  I do have a mild problem in my gut but new medication is now fixing it.  Hopefully (as in 9 out of 10 cases of neutropenic fever) there isn't anything wrong but I certainly don't want to be that 1 case. 

Now for some additional happenings.  Ever since the Chemo infusions (9 days ago), I haven't been able to shave.  Per doctor's orders, there's a danger I may nick myself and since I don't have white blood cells, it would be really difficult to heal.  In the meantime, my facial hair has been growing.  I've never had a moustache or beard before.  I tried it for a few days in Spain last year but it didn't really work.  For some reason, post Chemo, it came out in full force!  The doctors then noted that if I wanted to, I could use an electric razor which wouldn't nick or cut.  I couldn't take it anymore!  Ria went to Target and picked up a Philips/Norelco 1150 wet/dry electric razor.  Yes, it doesn't shave like a Gillette Fusion Proglide but hey, it works well enough!  My face feels new again.  It's one of those little things that help us to get through this!

Also on a lighter note, NONE of my hair has fallen out.  Not one.  What is up with that?  I had assumed post-chemo that it would all fall out.  Now, 2 weeks getting my head shaved, my hair is growing back with a vengeance!  OK, back to the doctors.  "It's different for everyone.  It may not fall out until you start engrafting (Day 14)".  Oh well, in the meantime, I'll live with the shaved head look.  It's starting to grow (literally) on me.

Thank you to everyone for your support and prayers!  We are all going to make it through this and see a better tomorrow.  Just a few more weeks.  Love to all.

Days 1-5

Tuesday, Nov. 19

Wow, I'm tired.  It's only 10am in the morning but I'm already wiped out.  Actually, when I woke up, I felt wiped out.  I don't want to keep lying down because that's going to make me light headed.  But, getting up and evening going to the kitchen, sit down and eat something takes a lot out of me. 

Eating isn't as easy as it used to be.  For anyone who has had a bone marrow transplant, I now know what it means for food to not taste like anything.  Fantastic pizza tastes like paper and glue.  Eggs taste like cotton.  Sausage, well, I can't really describe it.  But I have to eat, otherwise, my really limited strength will become even more limited.  Need the Protein.  I'm the Special K Protein man right now.  Special K protein drinks, protein breakfast bars.  I can taste the chocolate and strawberry flavors enough to enjoy them but it's actually very tiring to eat!

Now the good news.  This is exactly how I'm supposed to feel 5 days after transplant.  If I didn't feel this tired, it would be abnormal.  My doctors and nurses all tell me that I'm doing great, even though I don't feel great.  My blood tests show results exactly what they're supposed to be, i.e., white blood cell counts going down.  Hemoglobin is steady (thanks to a blood transfusion on day 2).  No infections, fluid retention, other complications now.  I'm doing great!  But, not feeling great.  A bit of a weird paradox in that I'm supposed to feel this awful in order to feel really good later on.

I cannot complain for one second.  God has given me my life back.  The storm is passed and we're just waiting for the garden (i.e, my blood cells) to grow again, healthier and cancer free.  While lying around this morning, I asked Ria to pray with me.  Big surprise, after saying the rosary, I felt much better (i.e,. I'm actually writing this post sitting up).  Call the rosary a required item on the med list.

Thank you all for your support and prayers.  We would not have made it this far without you!

All the best,
Buddy and Ria 

Friday, November 15, 2013

The Transplant!

Nov 11

We met with Dr. Gertz who continues to be very optimistic about Buddy breezing through the whole process.  While on average, 80% of transplant patients are admitted in the hospital for one reason or another, he estimates that Bud has a 1:3 chance of getting admitted given his age (Bud is 45, most are at least 10 yrs older), creatinine (Bud's is normal at 1.2) and stage of disease (Bud's myeloma is in remission and the amyloid in the bone marrow measured by NT-proBNP has gone down from 80% to 5%).  Not counting last week, of course.

To celebrate, we decided to have steak and lobster the night before he started chemo...after a bit of shopping, even;)

Nov. 12 (Day -2) and Nov. 13 (Day -1)

Chemo "conditioning" days.  These two days, I was infused with Melphalan, a major dose of Chemotherapy aimed at wiping out any residual cancer cells in my system.  The side-effect is that it also wipes out the red and white blood cells in your body at the same time.  This is why they took out my stem cells last week, so that after the chemo conditioning, the stem cells can be re-introduced into my body and regrow new and healthy red and white blood cells. 

The Melphalan infusions took about an hour each.  During that time, I would eat popsicles, lots of them.  10 popsicles in an hour.  

10 popsicles on Day-2!

Reason being, when you freeze your mouth the chemo has less of an effect of creating mouth sores later on.  Kind of a cool way to avoid mouth sores but you get a major sugar high. 

Day-1 Popsicles!
Also my Day -2 forward, I have to wear the "Darth Vader" mask.  I can't be exposed to any germs as my immunity is really low.  The 3M N95 which filters out 95% of particulates in the air.  If you ever have to wear one of these, make sure of one thing.  Brush your teeth before wearing it! 

"Luke, I am your father."

Nov. 14, 2013 (Day 0)

The nurses and physicians all wished me "Happy Birthday" today.  It's my "new" birthday as all of my stem cells have now been re-infused into my body.  We started at 530am.  Blood tests were initiated and then they started me on the preliminary procedures such as infusion of Sodium Bicarbonate.  For the stem cells, the original plan was to have them come through my central catheter.  Unfortunately, as it was leaking last week, it was taken out.  So, the stem cells had to come through a "high bore IV needle".  If you hear a nurse say "high bore", don't look.  Of course I did and it's not a skinny needle. 

After 3 hours of preparation, they started infusing my stem cells (harvested last week).  5 bags of my stem cells, linked by IV through the high bore needle.  It took about an hour and a half and they all went in with no issues.  Wow, after 7 months of treatments, recovery, planning, harvesting and chemo conditioning.  In 1 1/2 hours, my stem cells are now back in, with the objective to restart my whole immune system. 

3.7 million stem cells in these 5 bags!
My doctors are very optimistic that this will result in a full remission.  It won't be easy though.  Over the next few days, I'm going to feel weaker as my red and white blood cell counts will go to near zero.  If anyone is even remotely sick, you need to stay away from me!  

Then, after 7-10 days, my stem cells will "engraft", meaning I start to produce red and white blood cells  again and my  counts start going up.  They will send me home as soon as my Neutrophil counts are at 500 for 3 consecutive days.

I now need to focus on staying active, eating well (think of food as medicine) and keeping my spirits up.   I feel so blessed to have had an opportunity to have my 2nd birthday (it's the day before my mom's b-day so it's easy to remember).  Thank you all for your continued prayers and your support!

Buddy and Ria