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.