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.