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

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

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 

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

Embracing the future, not dreading it!

Sunday, Nov. 10

"How will it feel if all my hair falls out?"

"Will my kids freak out when they see me bald?"

"My appearance is going to radically change"

Many people (and now including me) have faced this issue with Chemotherapy causing their hair to fall out.  Up to now, the Chemo that I've been taking has only had the effect of thinning my hair, but I haven't lost it.  Since Chemo stopped 3 weeks ago, not surprisingly, the thinning stopped.  

That being said, I knew that with the upcoming Stem Cell Transplant this week, all of my hair would fall out regardless.  Rather than dread the "hair fall" when it happened, Ria and I decided to embrace it, celebrate it, and share the occasion with my family and friends.  So, for the first time ever, I had my head shaved.  And, I brought Ria, my kids, my best friend John and my dad to come for the occasion. 

After lunch, we went over to Great Clips near our hotel.  I told the stylist what we wanted to do and she noted that a number of other transplant patients decide to have the same thing done. 

So, here I am with my new look.  Ria says she would have fallen for me even with no hair.  My kids took photos, videos, and Bianca even saved my old hair in a plastic bag!  Now, they can't get freaked out when they see me with no hair in a few weeks.  John said I look "much tougher". 

It wasn't as hard as I thought it would be.  It feels kind of cool...literally...to have the new hairdo...or rather "No Hairdo".  Yet another step in the journey.  Instead of dreading it, we enjoyed it!

Our love and best wishes to you all.  More updates this week!

A Bountiful Harvest!

November 8, 2013

We've now been here at Rochester Mayo for 10 days.  The tests have been completed and all is looking very good.  I've had the Neupogen Shots, dealt with "good bone pain" and have done the harvesting of stem cells from my bone marrow.  Goal was to collect 6 million stem cells.  Enough for 2 stem cell transplants. 

The counts after 3 days of harvesting were:

- Wed., Nov. 6: 3.95 million stem cells

- Thurs., Nov. 7: 1.56 million stem cells

- Friday, Nov. 8: 1.19 million stem cells

What millions of stem cells look like!

All done with harvesting!  I can't say enough about how wonderful everyone here is at Mayo Clinic.  It must be a pre-requisite for anyone here to be really nice.  Everyone from the doctors, the nurses, nutritionists, receptionists, have been absolutely wonderful. 

It hasn't been without any hiccups though.  On Tuesday evening, my catheter, which is installed into my chest in order to facilitate the stem cell harvesting, started leaking.  It was fixed (suture done by the Interventional Radiology Surgeon) on Wed morning but then started leaking again on Thursday afternoon.  Fixed again last night but leaked again this morning.  To be honest, Wed-Thursday was exhausting as having to go back & forth to the hospital to get the catheter leak fixed wasn't very fun.  Ria and I agreed that there's two ways to approach it.  We could feel down about the whole thing (because we were so tired) or just laugh about it because the leaking was out of our control and we were still achieving our goal (6M+ stem cells). Well, we're laughing and keeping positive about this.  It's so much easier to smile and laugh than the other way around. The other night, the nurses had a sand bag and ice placed on the catheter to stop the leaking.  I joked that it was like hugging a cold teddy bear while sleeping. 

Dr. Gertz had the catheter taken out this afternoon.  The transplant team is having me stay at the hospital overnight just to make sure that there is no more leaking.  Everything looks fine for now so praying that there are no further issues. 

The kids, my parents and mom-in-law are coming to visit this weekend.  We're excited to see them.  Lastly, the news today is filled with images of Typhoon Haiyuan (or Yolanda in the Philippines), which looks to be the strongest typhoon ever recorded.  What we're going through can't compare to the disaster being faced by the people in the Visayas region of the Philippines. Our prayers go out to them. 

Next week, we have meetings on Monday and then the massive chemo dose next Tuesday.  The transplant is scheduled for next Thursday, Nov. 14.  Wow, here we go.  7 months since we arrived in the USA, and the day of transplant is almost here.  Thank you all for your support, prayers and best wishes.  We would not have made it this far without you!!

GAME ON!!!

"Good Bone Pain"

Sunday, Nov. 3

Yesterday and today, I received 4 Neupogen shots (2x a day), subcutaneously in the stomach area.  This is the same area where I used to get my Velcade shots when I was still getting Chemo.  The shots don't hurt too much as the needle is very tiny, but the injection takes a while (because the needle is so tiny!).  Neupogen acts with the stem cells in my bone marrow so that they go out into my normal bloodstream so they can be extracted for the transplant. 

Waiting for the Neupogen shot

So, after Day 1 of these shots (yesterday), the common side effect happened.  Bone pain.  Big time discomfort.  Laying in bed hurt.  Sitting down hurt.  Crossing my legs while sitting down hurt.  Sitting while driving was difficult (Ria took over the driving duties).  Standing up didn't hurt as much but wasn't very comfortable.  So, then we go back to Mayo clinic today, for more shots.  The nurses then told me that the pain was due to my bones reacting to the medicine and the stem cells moving into my bloodstream.  They said this was "Good Bone Pain".  Great, but let me tell you, "Good Bone Pain" isn't much fun.  They gave me some medication, Oxycodone.  Oxycodone is really strong stuff.  The medication takes away the pain but it's a narcotic and makes you feel a bit woozy. 

Now I know why I don't like medication.  Yes, the pain was dulled but I didn't like the feeling of "floating around".  I ended up taking a two hour nap.  After the medication wore off, I went with Extra Strength Tylenol instead.  No floating feeling and the pain was mostly dulled.  I can't complain though.  All of this is part of the path to get the transplant.  We'll make it through this.  I know I have the strength to get through it thanks to the support and prayers from everyone.  God didn't let us get this far to be slowed down by "Good Bone Pain". 

This week is Neupogen shots for two more days.  On Tuesday, I get a central venous catheter which is what will be used to extract the stem cells as well as to infuse the Chemo next week and re-infuse the stem cells (also next week).  I don't really like catheters (had one for 8 weeks while I was on dialysis) but this one is for all the best reasons. 

Will keep everyone updated!

This is more difficult than I thought

We've just spent 5 days at Mayo Clinc.  Renal Function Test, Echocardiogram, EKG, Pulmonary Tests.  We also had meetings with the transplant coordinator, the team in charge of the stem cell extraction and the hematologist.  Yesterday and today, I have Neupogen shots which will help to get my stem cells into my bloodstream so that they can be extracted. 

All of the above hasn't been that hard.  The most difficult part of this whole experience has been leaving the three kids while Mommy & Daddy have to be away for 6 weeks.

On every day since "The Phone Call from Mayo" on Oct. 11, I've been dreading Nov. 1, the day we would drive to Rochester for a 6 week stay.  Yes, this procedure for a stem cell transplant will not be easy at all.  But honestly, saying goodbye to the kids for 6 weeks is much more difficult.  Since the "new normal" has settled into place, living in the USA, seeing the kids every morning and every night, listening to their loudness, their laughing, hearing about their stories of their robotics club, talking about "boys" while on hay rides, watching the creation of a halloween costume of "an Amazon Box"; I now treasure every moment of being with them.  It's wonderful.  Now, we've had to leave them.... again.  I've told them that Mommy and Daddy need to be away so that I can be healthy again.  The three of them and Ria are the biggest reasons why I need to beat this cancer.

Every time that Ria and I see families with their children, I feel a bit sad that Luis, Nadya and Bianca aren't here with us.  But as we know, this journey is a marathon, and for these next 6 weeks, Mommy and Daddy need to be away from home. 

Join Us in Prayer

As we begin another step in this journey, we ask all our family and friends to join us in our Novena prayers starting on Oct 21...9 days before Bud's stem cell transplant process begins.

I am sharing with you our own family's daily prayers which I first heard my kids recite, by heart, when they arrived here from Manila on Apr. 26. Apparently, my mom had taught it to them in the 2 weeks that we were separated.  

I was crying when I first heard them say this because it was clear that they meant every word of it --- and to myself, I was asking, "How can God deny these kids what they are asking for?".  But He didn't, He has given us all that we have asked for and more. 

Memorare

Remember, O most gracious Virgin Mary, that never was it known that anyone who fled to thy protection, implored thy help, or sought thine intercession was left unaided.

Inspired by this confidence, I fly unto thee, O Virgin of virgins, my mother; to thee do I come, before thee I stand, sinful and sorrowful. O Mother of the Word Incarnate, despise not my petitions, but in thy mercy hear and answer me. 

Amen. 

Prayer for the Intercession of Pope John Paul II

O Blessed Trinity, we thank you for having graced the church with Pope John Paul II and for allowing the tenderness of your fatherly care, the glory of the cross of Christ, and the splendor of the Holy Spirit, to shine through him.  Trusting fully in your infinite mercy and in the maternal intercession of Mary, he has given us a living image of Jesus the Good Shepherd, and has shown us that holiness is the necessary measure of ordinary Christian life and is the way of achieving eternal communion with you.  Grant us, by his intercession, and according to your will, the graces we implore, hoping that he will soon be numbered among your saints. Amen. 

A Miracle Prayer Habit for BUDDY

O Father of life, we come before you for help. We commit to you with perfect trust as Buddy goes through his healing treatment. Protect him in his hour of pain. Endow Ria with superhuman strength and perseverance. Guide the hands of everyone who shall touch Buddy with Your healing touch! Grant them wisdom and success that the outcome of all their endeavors will only be a sign of Your Light and goodness. Lord, grant Buddy forbearance through these trying times with cheerfulness and thanksgiving for Your miracle soon to unfold. Let these moments be a beacon of faith for Buddy, Ria, Luis, Nadya and Bianca. May they be witnesses of a faith experience for all! May all our love and prayer devotion be Buddy's healing balm.

Lord, finally, let your Easter Sunday experience descend upon Buddy specially, and his entire family! Infuse in Buddy a drop of your blood and alter all that is not from YOU in his system!

All these we pray by the blood of the Lamb, in Jesus' mighty healing name! Amen

Glory be to the Father and to the Son and to the Holy Spirit. Amen. 

Our father...

Hail Mary... 

Saint Faustina Kowalska's Healing Prayer for Divine Mercy 

Jesus, may Your pure and healthy blood circulate in Buddy's ailing organism, and may Your pure and healthy body transform his weak body, and may a healthy and vigorous life throb within him, if it is truly Your Holy Will.

O Blood and Water, which gushed forth from the Heart of Jesus as a fount of Mercy for us, I trust in You. 

Holy God, Holy Mighty One, Holy Immortal One, have mercy on us and the whole world. Amen. 

Prayer to the Infant Jesus of Prague

O Infant Jesus, I run to You, begging You through Your Holy Mother

to save me in this need for Buddy to be healed,

for I truly and firmly believe that Your Divinity can defend me.

Full of trust I hope in You to obtain Your holy grace.

I love You with all my heart, I am painfully sorry for my sins

and on my knees I beg You, o Little Jesus, to free me from them.

My resolution is to improve and never more to offend You.

Therefore, I offer myself to You, ready to suffer everything for You

and to serve You faithfully.

I will love my neighbour as myself from my heart for the love of You.

O Little Jesus, I adore You, o Mighty Child, I implore You,

save me in this need for Buddy to be healed,

that I may enjoy You eternally, with Mary and Joseph see You

and with all the angels adore You. Amen.

You may choose one or all of our prayers, or you may have a prayer of your own.  Thank you all for the love and support you continue to give us.  We couldn't have come this far without you.

Ria

The beginning of a new beginning

And so it begins.  Mayo Clinic called last Thursday, Oct. 10.  Ria and I were driving home and I heard my cell phone.  The voice was Brittany, the lady from Mayo who I've been talking to whose team has been telling me every week "we're talking with your insurance company".  My insurance company contacted them early Thursday morning and provided the final approval that everyone was waiting for.  "You're scheduled to start your stem cell bone marrow transplant on Oct. 30".  Here it is, right in front of me (snapshots below of the schedule, it's 29 pages long!), the long-term solution.  After Ria and I met with Dr. Gertz last Aug. 12, we said then, "the best timing would be end of October, something like Oct. 30, so that we could be home before Christmas".  You sometimes get what you ask for.  I just looked at my schedule and the tests will start from Oct. 30.  We'll be in Rochester until approximately Dec. 12.

 I'll be sharing more about what is happening over the next few weeks.  This is my first ever organ transplant so it's a bit scary.  But, after the wild ride of the past 6 months, we're ready for anything and we've always known that this is the solution.  In the meantime, I'll share some numbers that people may find interesting:

26: This is the # of Velcade (Bortezamib) injections I've had since our journey started.  Velcade is the very potent chemotherapy treatment that has helped me to recover so quickly.  To anyone who has had a subcutaneous Velcade injection, I can share your...... well..... experience.  To put it simply, a Velcade injection hurts.  Actually, it REALLY hurts.  It also leaves what looks like a burn mark on your abdomen that stays there for a very long time.  That being said, in the past few months, I've always looked forward to my Velcade injections every Tuesday.  I knew that the chemo was there to help me, so I learned to live with "The Ouch Factor".

22: Years ago that I used to sing in the Holy Name Choir.  Last Sunday, Oct. 13, I watched Nadya and Bianca singing on the same choir chairs that I used to sing in, singing some of the same songs.  I never would have thought all those years ago that my daughters would be up there singing during mass.  

20: Pounds I've lost since this all began in January.  I lost more when I was in the ICU during April and May but I don't want to count that.  I'm still at my high school weight and despite my fairly healthy appetite, I haven't gained much back.  Ria said I'm now at the optimum BMI so let's hope that after the transplant, I can maintain my high school look.

7: Weeks that I will never forget as that is how long I was on dialysis from late April to early June.  I took so many things for granted before, but after losing my kidneys for almost two months, I never realized how lucky I was to gain them back.  I looked back at my GFR scores (the ones that measure kidney function).  The scores were really low from April to mid-May.  They accelerated back to normal function after May 22, my birthday.  Great birthday present don't you think?

6: Months since Ria and I arrived in the USA, went to Mayo Clinic and began this journey.  Seems like a lifetime ago!  In some ways, it's a new lifetime as thanks to God, a whole lot of prayers, and some fantastic doctors and nurses, I made it back from the brink in late April/early May.   

4: The average # of times the nurses tried to get an IV into me for the past two months.  Since I've been having Chemo every week, my veins have started to revolt against having these IVs stuck into them and basically said "You aren't coming in here Mr. IV needle".  Even the best nurses, who used to be able to get the IV to work on the 1st try previously, would miss.  However, last Oct. 8, which was probably my last Chemo session until the transplant (and hopefully, last one ever), my nurse got it on the 1st try.

Innumerable and immeasurable!: The amount of prayers, love, well-wishes and the support that I've received from family, friends, friends of family.  I can't thank all of you enough for helping us get this far.  We still need your prayers for the upcoming months as we go through the bone marrow transplant. Thank you!

Waiting for the call from Mayo

It's been awhile since I made a blog post.  It's been a busy few weeks.  Kids are settled in school.  The home situation is settled.  Work at Global Sources has normalized. Work hours are a bit different (7-12 at night, then mornings until about 1-2pm) but I've gotten accustomed to it and it works out just fine.  Previously, things had become a "new normal" and that at times, I would forget that I had cancer.  Well, I don't forget anymore.  Every day, I'm thinking of it. Nothing to worry about, my multiple myeloma is still in remission and I feel great.  But ever since Aug. 12, when I met Dr. Gertz, there's been a waiting game, waiting for the next steps towards scheduling a bone marrow transplant.  This is the long-term treatment for my Multiple Myeloma and Amyloidosis. 

Why the delay?  Actually, there isn't a delay.  Mayo Clinic needs to have their internal recommendation ready and then they contact my insurance company.  Both Mayo Clinic and my Insurance company have contacted me and have told me that they're talking to each other to work out the details.  Once they've agreed, then the "Schedulers" come in.  Then we'll know what will happen and how to schedule it.  The process for a bone marrow transplant isn't exactly simple.  There's 1 week worth of tests, 1 week of stem cell extraction (you're sitting in a chair for 8 hours a day).  It's similar to my dialysis treatments from 3 months ago (seems like a lifetime ago).  Then, there's the "reset button", where there is a massive chemo dose, followed by infusion of my stem cells.  Then recovery.  Through this process, there will be immunity issues which we'll have to deal with.  Also, we'll need to deal with a departure from our new normal.  The kids will still be going to school during this time so we'll need help to take care of them while at Mayo Clinic.  We'll have to work out all of the logistics soon enough.  We've made it so far and I'm pretty confident we'll be able to get through this as well.   I still have other signs that I'm still not even close to 100%.  For obvious reasons, I can't lift heavy things.  My bones are not exactly super strong.  My skinny arms and legs are still, well, skinny.  My face looks like it's fat because of the corticosteroids even though I'm at my high school weight.  As an aside, I always get comments from anyone Filipino who sees me via Facetime or Skype "Ang taba taba mo na!" or "Tumaba ka na".  To my English speaking friends and family, loosely translated, that means "You look so fat now!" or "You've gotten fatter!"  It's not a negative thing (actually can be considered a compliment), considering my skeletal appearance a few months ago.  The meaning is that "you look healthier!"  That being said, my hair is starting to thin out from the weekly chemo and anti-nausea. During my weekly chemo sessions, unfortunately, it averages 4 tries before the nurses are able to find a vein that "sticks".   

Then, we have to do the normal things that people in Minnesota need to do, i.e., buy winter clothes.  When we left Manila in April, we only had two suitcases and nothing for winter.  Kids didn't have coats, booths, gloves, etc.. Well, they do now and they're ready for the elements.  Whether they have the thick skin that people in MN have, not sure yet but we're ready!  

We also have holiday planning to think about.  Nearly a year ago, we planned for a family reunion over New Year 2014 in the Philippines and in Boracay with Mike's family and my parents.  Well, they're all going, except for us!  We'll be staying here.  No worries, we'll enjoy our 1st Christmas here and New Year in Minneapolis while they'll all be enjoying the beaches of Boracay. 

My insurance company just sent me an email saying that they will be calling me shortly to confirm the approved treatment.  OK, that's a positive signal.  We're almost there.  Will let all know when this will happen, and then the journey will continue. 

Giving a little bit back

Sep. 7, 2013
4 months ago, things were not going well as I was in the ICU at Park Nicollet.  Now, because of the doctors, nurses at Park Nicollet and a whole lot of prayers, I'm doing great.  Ria and I decided that we should give a little bit back.  We joined "Marathons of Hope", a 5K Run/Bike/Walk that is held by the Frauenschuh Cancer Center every year.

 Each team gets sponsors to support cancer patients and their families through their journeys, much in the same way that I have gone through my own journey.  Giving back (even if it is a little bit) feels great.  Thank you to my sponsors (about US$500 worth!)

Luis and I joined the Bike Ride portion.  I ran into Dr. Mark Menge, my oncologist.  He mentioned that it's great that the we were here given the condition I was in just 4 months ago.  I proudly wore the red bandana that is worn by "survivors" of cancer.

I consider myself a survivor now and will forever be grateful for having made it through my cancer journey for now.  We rode around Lake Calhoun and Lake of the Isles, two beautiful lakes right in the middle of Minneapolis.  I used to live on Lake of the Isles 17 years ago and one of my favorite activities was always to ride around the lakes.  4 months ago, I didn't think I would get that opportunity again, yet here I was, following Luis and our group of marathon riders.  What a wonderful morning!

At the start line.  Note the red bandana!

With Dr. Mark Menge, my oncologist

In front of Lake Calhoun

Back to Mayo - 4 months after the journey began

August 10, 2013

It's Saturday, Aug. 10 and I feel great.  4 months ago today, we were off to Rochester to the Mayo Clinic as we had just arrived in the USA to begin our journey.  I remember how weak I felt, how uncertain everything was, and how I knew something was very wrong with me physically.  I was waiting for the Mayo Clinic doctors to confirm my diagnosis that I really did have Bone Marrow Cancer (Multiple Myeloma) and Amyloidosis.  We didn't know what would happen after the diagnosis.  Our kids were home in Manila with their Lola Julie, not having any knowledge of where they were going to be 4 months down the road.

What a difference 4 months makes.  The two stints at the ICU, renal failure, viral pneumonia, GI bleeding, atrial tachycardia, along with the amyloidosis and multiple myeloma will always be a vivid memory.  However, the more vivid memories that  I experienced first hand were the power of prayer of friends and family and the hand of God to get me through those trials.  I also experienced the best skills of cardiologists, nephrologists, dialysis nurses, hospital nurses.  I learned (quickly) that family is more important than anything.  My kids flew to the USA and we're all together now.  

4 months later, my cancer is in remission.  The prayers have worked!  The chemotherapy medication is working.  My kidney functions are back.  No more dialysis.  4 months ago, I could barely stand up and walk.  Now, I can go biking for 40 minutes a day.  We have moved into a new home in Plymouth MN which we really enjoy.  My kids are adjusting to life in the USA and getting ready to start school.  I'm working again and contributing to my very supportive company, Global Sources.

Life has become.... a new form of normal.  It's nothing that we expected even at the beginning of this year, but we now enjoy our new lives. Nadya said to me the other day.  "Daddy, sometimes I forget you have cancer." Well, I don't forget...  I've learned how to manage it day-to-day.

We've also done some very enjoyable things.  We celebrated birthdays and holidays with friends and family who visited us.  We spent time with Mike's family in Chicago.  The kids have learned how to go fishing.

My new office.  Working from home

Aug. 3, the Mojica Kids at Wisconsin Dells

Aug 9, Luis and Nadya with a huge fish!  

We went to Wisconsin Dells to a huge waterpark.  We've visited Valleyfair.  I've spent a lot of quality time with my childhood friends.  Experiences I wouldn't trade for anything.

Reality check.  I did have an Echocardiogram on Friday where my Cardiologist (Dr. Ruffy Festin, my cousin) told me that my heart is not 100%.  It's slightly improved from May but I still have a # of issues.  On the positive side, I don't have an irregular heartbeat anymore and my previously very loud heart murmur is no longer very loud.  That being said, it's a bit of a wake-up call that I still have health issues that I need to pay attention to. 

I'm going back to Mayo Clinic on Monday, Aug. 12 to talk with Dr. Gertz, the physician who provided my original diagnosis.  What's next?  My oncologists in Minneapolis have said that I'm a candidate for a Stem Cell Bone Marrow Transplant because I've recovered so quickly.  The doctors have all said that a Stem Cell transplant (using my own stem cells) is usually the best route towards long-term remission of multiple myeloma.  The questions in my head are flying prior to the visit.  Now that life has stabilized, kids are starting school soon, we've moved in and settled in, I'm working.... are we ready for the process of a stem cell transplant?  This is a long stint in the hospital.  Are we ready to go through that again?  So soon?  Now that everything seems to be stable?

Aug. 12, 2013

Walking through Mayo Clinic was a bit emotional this morning.  Reason being, I hadn't actually walked through Mayo Clinic previously.  The last two times I was here, I couldn't walk.  I could barely get out of a wheelchair.  Now, I felt almost like a tourist enjoying the sites.  Ria, the kids and my dad came with me.  Oh yes, they took blood from me and ran lab tests.  I had an appointment with Dr. Morie Gertz, one of the premier Hematologists/Oncologists in the world (this is not an understatement, he's that good).  I'm truly blessed that God placed me with Dr. Gertz, as he knows my disease better than anyone.

April 11, 2013, 1st visit at Mayo Clinic

What a difference 4 months make.  Same place!

We talked to Dr. Gertz about my condition.  He went through all of the results of my tests, including my Kappa Light Chains (measurement of cancer activity), protein level, troponin, heart condition, kidney functions, etc..  He noted that in April, that if I had gone ahead with a stem cell transplant, he didn't feel that this would have been survivable at that time.  He said that I'm not the same person now.  My condition has improved so much that I should now proceed.  A successful stem cell transplant of my own bone marrow has a very high chance of putting the cancer in long term remission.  Dr. Gertz said they have 55 cases of patients at Mayo Clinic who have had 10 or more years of remission from Multiple Myeloma and Amyloidosis after Stem Cell Transplant.  The only reason it's 10 years of measurement is that these drugs haven't been around very long.  He said the failure rate was 1-2%.  He also noted that I can't be on Bortezamid and Cytoxan indefinitely as these chemo medications can eventually do long term damage to my organs.  Post the stem cell transplant, there are regular checkups but, if it works according to plan, no need for further chemo.

This is fantastic news!  But, there is anxiety attached to this fantastic news.  Life has become so "normal" again and now I (we) have to get our mindset to go through potentially 6 weeks having tests, harvesting my own stem cells, major chemotherapy, infusion of my stem cells, recovery, etc...  The kids are about to start school.  It will be very difficult to be away from them yet again.  Luis said immediately to Ria and I, "you're leaving us again??" Ouch, didn't expect that.   However, the short amount of time (relatively) needed to go through this procedure is probably a short period of time compared to the long-term prospects of cancer remission.  The answer is obvious.  This is a new light at the end of a tunnel.  A potential gateway to long-term full recovery.

The question now is timing and logistics.  As my brother Mike said to me the other night, this is something we have full control over in terms of when to make it happen.  He also said that at this time, "You're not dying.  in April, you had to make fast decisions because you were dying."  A bit blunt, but true.  Yes, we'll make it happen.  Stay tuned for when.  My thanks to all of you for your prayers and thoughts.

Moving In and Moving On...

Forgive us for the lack of recent updates.  Now that Bud is living a more normal life (if a weekly chemo session can be considered normal), we are burdened with more mundane things like house cleaning, doing the groceries, house cleaning, cooking, house cleaning, laundry, house cleaning, preparing for school, house cleaning, summer camps, house cleaning...you get my drift...

Last week we moved into a home whose previous owner was a single guy (looks to be in his late 30's - 40s) with a cat -- you can just imagine what cleaning the fridge and oven (where all he cooked was pizza as evidenced by the pizza pan that he left behind) were like for me -- who never had to clean any of those before in my life!

But I guess it was good, too, that he was single because he never bothered to put anything up on the walls so all we had to do was re-paint the shocking yellow bathroom walls and the psychedelic blue master bedroom to the Zen-like white walls we have in Manila and we were all set to move in -- but not before we had professional carpet cleaners and a cleaning lady tackle the bathroom grime do their thing though.

We are making the most of our life here in the US, but would give ANYTHING to be able to go back home to the life we knew.  When Nadya was given $50 as a birthday present last week, Bianca immediately asked..."Is that enough to buy a ticket to Manila?"

I personally feel that we have been given a second chance to renew our life here.  Not that there was anything wrong with our life before, except maybe that we rarely saw Buddy because he was traveling for work all the time.  Now we are all learning to spend more time together, sometimes I tease Buddy, half-jokingly, if we're going to survive this, since we haven't spent so much time together in all our married life...and now we're together 24/7.

In 2 weeks we'll be going back to Mayo Clinic to see Dr. Gertz.  Bud's progress has been so remarkable that the doctors here at Park Nicollet think he may be ready for a transplant, but that can only be determined at Mayo Clinic which has the facilities to do that.  When he was first diagnosed with cancer on April 18, Dr. Gertz said we were looking at treatment of at least 1 year before we could even consider a bone marrow transplant...that is how miraculous Bud's progress has been!  And there is no scientific explanation for it -- it can only be because of everyone's prayers...

But geez, God, if all you wanted was for us to relocate to the US, couldn't there have been an easier way???  But maybe the answer is NO, because through all this we have all grown and learned so much.  So many things, on hindsight, are making more sense now -- as if God was preparing everything to make our journey smoother...and hopefully, the road stays smooth from now on...

Ria

Moving towards normal life, and loving every minute

Wow, what a couple of weeks!  So much happened, and so much was so "normal".  I look back (again) at where I was a short two months ago and at that time, never would have imagined enjoying normal things.  First some highlights:

• For the first time in 32 years (!) I went to Valleyfair, THE theme park in Minnesota.  The last time I was there, I was the age of Luis.  This time, there was Soak City, right in the middle of Valleyfair.  The kids loved it.  What they may not have seen is that I may have had as much fun as they did simply watching them have fun.

Valleyfair on July 10, 2013

• I took the kids fishing.  I used to love going fishing when I was their age.  Each of them caught a fish. Even Luis, who really didn't want to go fishing at the outset, caught the first fish and he ended up being the "casting expert".  

Fishing at Independence Lake on June 30

• We had our 1st 4th of July celebration, watching fireworks at Lake Minnetonka.  Of course, the location we went to had a Sebastian Joe's Ice Cream stand next to it so Bianca wanted some - she thinks the Raspberry Chocolate Chip is totally worth the 30 min wait in line.  FYI, Sebastian Joe's is wildly addicting ice cream and has been rated the best in Minneapolis.  

• Ria and I have been mapping out the Minneapolis food scene.  We've eaten at some great Thai, Italian and good old American barbecue restaurants and absolutely enjoying them (without gaining any weight, on my part, at least -- Ria is starting to complain though...)

Celebrating our house closing at Famous Dave's

• We've taken up a membership at the local health club, Lifetime Fitness.  Kids like the pools and the water slide.  Ria likes the treadmills and the weights.  I'm using it to get my physical strength back.  

• I get to ride my new bike around.  This is more for the exercise but I used to absolutely love bike riding.  I ride as much as my body will take (20-30 minutes every other day or so) and I enjoy it.

• I'm working more and more now that I have time and really enjoy contributing to Global Sources.  First it was 5-10 hours a week.  This week it's around 20 hours a week.  Soon, it will be 30-35 hours a week.  I agreed with management to cap it as priority 1 is still to get back to 100% healthy.  

• We closed on our new home here in Plymouth, MN.  We'll need to furnish it, but we'll now have a place to call our own during our journey here in the US.  To all our friends in Manila who we never got to say a proper good-bye to, you are all welcome to visit anytime...

Our House

Two months ago, these would not have even been an inkling, but now they are my reality in moving forward as a person.  What I feel is the best part is that all these enjoyable moments are happening and, by the way, I'm still going through Chemotherapy.  Despite this, I've taken the advice of those who have had cancer and changed their lifestyles.  I've learned that one of the most important lifestyle changes a person can have while managing their cancer is to enjoy things and have fun.  I've had a lot of fun in the past 4 weeks and all of it while still still managing my cancer.  

Speaking of which - the medical stuff!  Per my oncologist, my multiple myeloma seems to be under control from the aggressive chemotherapy medication that I've been taking.  My oncologist is very encouraged by the results noting that this is where I should be and now wants to consider the long-term treatment of a bone marrow transplant.  They need to determine the situation with my heart and see if it can take the procedure.  Everything in consideration, we couldn't be happier with my recovery process.  We'll find out in the next couple of weeks with a trip to my Mayo Clinic doctor as to what I need to do next.    

Many people have written that they are still praying for me. I feel wonderful right now doing the normal things in life and a huge reason has been the love and support I've felt from everyone.  I'm a firm believer that cancer recovery and cancer management is only 40% medication and 60% prayers, support and positive attitude.

Before we embarked on this journey, I told many friends and relatives, "Whatever this is, if it's cancer, it's taking on the wrong person".  I need to correct that.   I have so much support from family, friends, co-workers, prayer groups that are all with me in this fight against cancer.  It's not me, it's we.  I know that these are the reasons why we've been able to manage cancer during this journey.  To all of you there, my deepest thank you for your help and support.

Thank you!

Looking back at my past, opportunities going forward

A quick update on my blood tests.  The test for the level of Multiple Myeloma (bone marrow cancer) is by measuring Kappa Light Chains in your blood.  Normal is between .3 - 1.94.  When I was first diagnosed, my scores were over 1000+.  On Thursday June 21, a bit more than 2 months after my diagnosis, the test result with 1.43, in the normal range!  The medication and prayers are working!

This weekend we all went down to visit Mike, Lisa and his family in Chicago.  Today, Mike and I decided to go to Notre Dame, our Alma Mater while Ria and the kids hung out with Lisa and their kids.  I haven't been to Notre Dame since 1991.  Wow, have things changed on campus.  I didn't recognize half of the place.  But, the places that I did remember brought back good memories.  The Golden Dome, the Library with Touchdown Jesus, my dorm Morrissey Manor were all places that I would see every day back in 1986-90.  But one place that I made sure to spend time at was the Grotto.  I made a promise to Mama Mary back in 1990 that I would come back someday.  I didn't expect to be coming back to thank Mama Mary for answering all of our prayers and thanking her for the life I've been living since I graduated from the school.

When I was at Notre Dame, I did struggle a bit.  I changed majors 5x and still graduated in 4 years but my grades were admittedly not spectacular.  However, I would never have had the life I've had if I didn't experience what I did at ND.  Because of ND, I went on to work in Germany, in the Philippines and developed my passion to work in International locations which is how I've developed my whole career.  Eventually, I ended up at Thunderbird for my Masters degree and in Manila where I met Ria.  The rest is history.

Where to go from here?  Due to my unexpected illness, we're in the USA, building our lives with Ria and the kids from a new location.  Life in the USA is much different from the Philippines but it gives our kids more opportunity to learn and  see what I experienced when I was their age.  I realized that despite my struggles at ND, I still made the most of all the opportunities that came out.  By being now in the USA for now, we'll also make the most of all of the opportunities here!

 

The attitude going forward

It's June 13, 2013. My nephrologist called yesterday morning saying "Your kidney recovery is incredible! When can we schedule your dialysis catheter to be removed?".  This was the call I have been waiting for for 7 weeks.  He wanted to wait one more week to make sure the test results last week were really correct and of all things, my kidney function improved further.  Today at 1pm, the dialysis catheter was taken out!  My life will become even more normal as I don't have to shower with plastic wrap taped to me and I may finally be able to sleep on my right side!  Again little things that I used to take totally for granted.

The route forward?  I've noticed that now that I have a much more normal life now that I don't have dialysis 3x a week and that I feel absolutely great, is that I can't slip into my "old attitude" on life. What many don't know is that prior to getting sick, I was a total hard-driving, schedule locked stress machine.  Too much was focused on where I had to be (to the minute), what I had to do and if anything deviated from that, I would get upset internally.  Many little things that was 'outside my opinion of what it should be' would get a negative comment in my head. Examples, people's driving habits in Manila which didn't suit my liking, government actions, whether they be local or International, other peoples' way of life.  I'll share with you some things I've learned that has helped me to cope with cancer and allowed me in the past few weeks to have a more positive attitude.

* If you accept things that are completely out of your control, you will be happier.  Totally true!  I've accepted that I have cancer, but it doesn't control me.  The way other people drive is totally out of my control.  Let it go! 
* Instead of criticizing something, compliment the good stuff.  You'll feel much better.  Here's an example, I was upset with my insurance company earlier because they needed things done in a certain procedure.  After I thought about it further, I stopped being upset and thought about how much they've helped me get through this.  No more negative feelings!
* Force yourself to have fun.  I know this sounds totally obvious but honestly, before I got sick, everything was more of a "task" rather than to have fun.  I can't tell you how fun it was this week just to sit around watching my kids ride their bikes with no time commitment, not having to be anywhere.  It was (and will continue to be) fantastic.

Studies have shown that many many cancer patients had extreme stress in their lives prior to being diagnosed with cancer.  Those who have shown the best recovery have taken a much more positive attitude. I really have to train myself to continue with this positive attitude and not slip back to my old self now that I'm getting back to much more normalcy and physically feeling better.  I have to continue feeling mentally better and improving it!

Last note for today.  Faith.  I've found that my faith has become much stronger in the past two months than it's ever been.  I've also learned that the faith of my friends and family who have formed my prayer warriors has been even stronger.  I hope all of you who have supported me now see the fruits of your faith.  Your prayers and support WORK!

My Prayer Warriors in Minnesota

What a wonderful day.  I started out with physical therapy, walking for 25 minutes on the treadmill and then doing upper body exercises.  It was a bit of an accomplishment for me to do 20 bicep curl reps with 2 lb weights but my arms had atrophied so much that it felt so good to exercise them.

Ria and I then visited the Davita Dialysis Center and brought Chinese food for all my nurses who took such good care of me during my 3x/week dialysis sessions.  I wanted to say goodbye to them as I had now "graduated" from dialysis.  My nurses told me that my recovery was remarkable.  I also said goodbye and prayed for my fellow dialysis patients. 

Later this evening, I met my mom's Marian Prayer Group at Holy Name Church who have been praying for me since the very beginning of my illness.  I wanted to say thank you to them for all their prayers and for them to know that my recent rapid recovery has really been because of the prayers that they and others have offered. 

I also want to mention the Medina Community Bible Study group led by Patrick Hofkes of 12 who have also offered so many prayers for me.  I also have a group of 120 multi-denominational members (who the group of 12 belong to) who have been so supportive in praying for me.  Thank you.    

I feel great.  Now that my kidneys have healed, the focus now is on addressing my cancer, amyloidosis and dealing with my related heart issues.  Still a long way to go but well on the right path, with God and with all of the help of my prayer warriors.  

Marian Prayer Group, Kathy Snyder, Ruth Bunda, Wanda Sweeney, Claudette Washington and my mom!

My Dialysis Nurse Cheryl

My Dialysis Nurse Dawn

My Dialysis Nurse Robin