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!
Thanks for taking the time to find out how we're doing...we are so blessed to have everything, and we are especially thankful for our family and friends...we put our faith and trust in God who loves us and has never failed us...
Saturday, June 22, 2013
Thursday, June 13, 2013
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!
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!
Friday, June 7, 2013
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.
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 |
Wednesday, June 5, 2013
I'M OFF OF DIALYSIS!!!!!!!
My doctor called me up just now. "Armando, you no longer have to be on dialysis." My kidneys have come back to regular function! He also said, "your potassium is too low, you need to eat bananas and pizza!" I can't tell you how happy I am!
One month ago, per my earlier post, the same doctor told me that after Amyloidosis affects the kidneys, that kidney recover is "very rare". He told me now that my recovery is "very rare". WOW!!!!
To those who have had kidney problems, I can share your difficulties, having experienced not going to the washroom for 4 days, experiencing little or no output for more than 2 weeks. To all dialysis patients worldwide, I know what you go through 3 times a week, sitting at a dialysis center for 3.5-4 hours each day, time and having your blood filtered. Seeing nurses more than you see your own family, having no kidney function indefinitely. I thought that was going to be me. Through the grace of God and through everyone's prayers, I now no longer have to go to the Dialysis Center. For those who still need to go to Dialysis, my turn to pray for them. I told the nurses that I'm buying lunch for all of them. They have been wonderful.
To the wonderful people of Holy Name Parish and my parents' friends here in MN and in the USA who have been praying for me in the USA, thank you. I met a number of them this morning and I got a bit emotional as I truly felt the power of their prayers, though I have only met some of them for the first time today. My parents, my awesome (83 year old dad who looks and has the strength of someone 30 years younger) dad and my loving, fantastic mom, have done so much to gather their team of prayer warriors to join us in our journey. Again, thank you from the bottom of my heart. My love to all of you.
My kidneys returning is another step in the journey but it's a HUGE ONE!
Here's the photo of the day. The photo is my June 4 blood test scores. One is my creatinine score (the 1.3 is normal) and the the GFR score (59 is almost normal). The scores on the the right are the older ones (from May 30) so you can see the progression of improvement.
One month ago, per my earlier post, the same doctor told me that after Amyloidosis affects the kidneys, that kidney recover is "very rare". He told me now that my recovery is "very rare". WOW!!!!
To those who have had kidney problems, I can share your difficulties, having experienced not going to the washroom for 4 days, experiencing little or no output for more than 2 weeks. To all dialysis patients worldwide, I know what you go through 3 times a week, sitting at a dialysis center for 3.5-4 hours each day, time and having your blood filtered. Seeing nurses more than you see your own family, having no kidney function indefinitely. I thought that was going to be me. Through the grace of God and through everyone's prayers, I now no longer have to go to the Dialysis Center. For those who still need to go to Dialysis, my turn to pray for them. I told the nurses that I'm buying lunch for all of them. They have been wonderful.
To the wonderful people of Holy Name Parish and my parents' friends here in MN and in the USA who have been praying for me in the USA, thank you. I met a number of them this morning and I got a bit emotional as I truly felt the power of their prayers, though I have only met some of them for the first time today. My parents, my awesome (83 year old dad who looks and has the strength of someone 30 years younger) dad and my loving, fantastic mom, have done so much to gather their team of prayer warriors to join us in our journey. Again, thank you from the bottom of my heart. My love to all of you.
My kidneys returning is another step in the journey but it's a HUGE ONE!
Here's the photo of the day. The photo is my June 4 blood test scores. One is my creatinine score (the 1.3 is normal) and the the GFR score (59 is almost normal). The scores on the the right are the older ones (from May 30) so you can see the progression of improvement.
Great #s! |
Sunday, June 2, 2013
Feeling Very Good!
I went to Mass yesterday for the first time in a month. I've been trying to avoid any kind of crowd since I got pneumonia because any slight common cold could send me back to the hospital. But, I really wanted to go to mass. I'm not the type of person who actually remembers what the sermons are, even after the mass just finishes. Yesterday, it was about the 5 loaves and 2 fishes with 5000 followers to feed. The message from the priest was "spread the word".
How does that relate to me? For all who have offered their prayers and thoughts for me, the only words I can spread can be noted in two simple words. "Prayers work". One month after being on on the brink, I'm feeling very good!
* I can walk 20 minutes a day and do 20 minutes of Physical Therapy exercises, whereas a few weeks ago, I couldn't walk.
* I look forward to 6am every day so I can go down, cook my own breakfast (sometimes cooking for Ria).
* I no longer have "cankles". For those who have had edema, this is when fluid builds up in your feet and ankles to the point where your calves and your ankles become one, you can't even see your ankles because of the swelling. I had cankles for 3 weeks. They're gone now!
* I can drive around with no problem.
I also see how my children have grown in the past month. I smile every time I see their made up beds, watch them unload a dishwasher, watch them take out the garbage, watch them do their chores without (too much) complaining. I'm so proud that they're making the adjustment here.
I know that all the advanced medication, dialysis and doctors alone who have been looking after me could not have gotten me to this point. Yes, they helped to facilitate it. But feeling this good has to be because of the strength that I've received (and am still receiving daily) from my friends and family. Again, thank you!
This week has been very eventful. A couple of highlights:
* My nephrologist called me. He said "your kidneys are healing well. We'll take you down from dialysis 3x a week down to 2x a week." Wow! Kidneys are healing. Fantastic news. This is the same nephrologist who told me 1 month ago, "For patients who have had kidneys affected by amyloids, we don't see kidney function come back". I can't tell you how good this news is. If you've ever lost your kidneys, you'll know what I mean.
* I passed my written Minnesota driver's test. I know this might sound funny but in order to get my Minnesota driver's license again, I had to pass a written test. I have to take a driving test on Monday!
* I was able to eat Panda Express for the first time in 6 years. Yes, if you've had Panda Express, you know what I mean!
* My old roommate Arun Rao from Thunderbird was in Minneapolis for a day and met up with us for delicious Indian food.
* The kids were able to hang out with the Pohlen kids (close to the same age) for a day.
I am so thankful, to God and to everyone. I feel very good! I'm halfway through my 2nd stage (out of 6) of Chemo and everything is moving in the right direction. THANK YOU ALL!
At Honey & Mackie's on Sat, Jun 1 |
Panda Express Lunch on Sat, Jun 1. |
Lunch on Friday with TBird roommate Arun Rao |
L-R: Luis (12), Theo (9), Olivia (13), Annie (12), Nadya (10), Bianca (7) |
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