Disconnected

It's been awhile since I've posted here. It's the Christmas season and yet I feel so disconnected from everything. So many things have happened since the last time I posted. On Dec 4th, Auntie Presidia Sagrado went home to be with the Lord. She was Mom to our good friends Presa, Amabel, Heidy, Alden, Ligaya, Noel and Joneth. In a way, it happened so suddenly but in the end we were all glad that she died peacefully, as if she just went to sleep. We watched some of the most tender last moments of Auntie's and Uncle Sal's lives... he was so comforting and loving to her until the very end. We grieve with our friends for her loss.. this has been a very difficult year, as we have had so many funerals this year. All of them have affected us in different ways and yet the end result is the same... we will miss someone we love and care for and life will be just a little bit different now because we feel the loss.

I just can't rouse myself to feel the Christmas spirit. I've been searching for the Christmas CDs and I still can't find them... at this rate, it'll be 4th of July by the time I find them. Maybe we'll have to have a Christmas in July celebration instead. I feel so disconnected from everything and everyone. Frendell asked me if I wanted to put up the tree. Initially, i wanted to... was even excited about it. But when I thought of the emotional energy and physical energy it would take to do it, I opted not to. So, he found some little Christmas decor that we've put around the house and that's the extent of our holiday spirit. Mom & Dad arrived last Monday, so that has helped us get more excited as the holiday is approaching. Looking forward to having Winnchee and Bryan come on Christmas day. I continue to have difficulty with sleeping, although when i use the blue light for therapy, it does make me sleepier earlier at night. I am hoping that my circadian rhythm will be closer to normal soon.

Tonight we will go to church for Christmas service. I know that 'my feelings' are tangential and not always reliable. So even though I feel disconnected with Christmas, I cannot help but feel thankful that Jesus would come down to save me. The children's department at Chicago Fi-am did a wonderful program last Sabbath about "The Best Christmas Present Ever". And they sung and talked about a Baby who came down from heaven so that He could offer the world salvation. It is indeed the best Christmas present ever. This gives me so much hope and I am thankful that He loves me enough to come to earth for me. I am so thankful and grateful for my family, who never ceases to share their love and affection and care, whether or not I express my love and affection and care on a consistent basis. I am so blessed to have such caring and thoughtful friends, who continue to show their love in so many different ways... whether by taking me to lunch, calling or emailing me, sending me a card, giving me baked goods that they made, inviting me to their house to hang out and relax while I wait for Frendell to finish with his meetings, inviting me to the museum... so many acts of kindness and love. I am grateful for our church families, who continue to show their support and love in so many different ways... from praying for us all the way to giving us gifts and food, I have so many blessings to be thankful for. God continues to show His love in so many ways, often tangible. Treatments continue and so do the side effects... but praise the Lord for He helps me through them.... and that is one Christmas gift I am thankful for....

Windows of Hope Project

Today, Michelle R. and I packed 4 boxes to send to the Philippines... boxes full of Bibles, clothes, towels, some toys and some school supplies. I am so grateful that she took the time to help me as I am still in pain and have been trying to pack box by box. It has been taking a very long time. Gave me time to reminisce our time last year when we were there for a mission trip. The things we take for granted here could help so many there. I am so glad we are able to help there where we can... and I am so thankful for our family and friends who helped with this project. Windows of Hope is the name of our project of sending much needed to supplies to the Philippines. I am very tired and very sore but I am so glad we got it done and now it can be sent on its way.

Yesterday I went to the cancer center for my treatment. The place was beautifully decorated with Christmas trees and holly and white lights. In the main lobby, they had the tree that was in Cardinal Bernardine's home when he was still alive and living here in Chicago. His estate lends it every Christmas to the cancer center that was named for him. There were more kids in my clinic yesterday as well. It touches my heart how brave these kids are. So many of them had lost their hair due to chemotherapy. It was neat to see parents trying to hard to make life normal for these kids. One family of 3 had their backpacks with their school work and books to read while their brother was getting treatment. A teacher was there for an hour as well. They're all staying at the Ronald McDonald house during this time. We are so fortunate that we have these kinds of services here. One kid was playing by the tree and the Mom made a comment that she was glad they had trees up, as her son has been asking for one and she hasn't had the energy to put one up. I felt the same way... as much as I want to put up a tree, I know I do not have the energy to put into it. Besides, I think we donated our tree away last year. Frendell did find our creche and some little decorations and we put those around the house and that will be our Christmas decor for this year. A part of me was sad that I don't have the energy to do all the things I used to do for Christmas.. I miss that... and yet a part of me is glad that I can focus more on the more important things.... like contemplating on God's greatest gift for us.

We are having snow flurries as I write this... winter is here and the Christmas spirit is in the air... so many things to be thankful for, so many blessings to count. May you feel the joy of the season...

My friend Sally

You've heard me talk about my friend Sally. We worked together years ago at Cook County Hospital here in Chicago. She is a Developmental Therapist who showed compassion and empathy to all the families we worked with. She also challenged me to always fight for those children we served. Sally has been fighting a devastating disease for several years now and yet inspite of her challenges, she always found ways to contact me and let me know she's thinking of me and praying for me when I had my surgeries and started my treatment... I honor her for her courage and faith and love. Sally, you are my hero and I am blessed to have you in my life. It is an honor for me to share a little bit of your story... please read more about Sally and her family...

I just thought I'd share this sermon my brother Andy gave this past Sunday. I had a REALLY rough week and had been in intensive care, something that really upset him so he decided to preach about it. I must say I was stunned when he sent me a copy of his sermon seeing as though he still harbors ill feelings for how much I dominated him as a child and adolescent! (I can only imagine how it felt for his younger sister to ride a 2 wheeler before him, beat him in basketball, skiing, and football!) However, reading this makes me very proud of the man of God he has developed into and the awareness he is helping to bring to our battle with mito!

Sermon given by Pastor Andrew Kukla

on 11-15-2009 at Palms Presbyterian Church, Jacksonville Beach, FL

Daniel 12:1-8

"At that time Michael, the great prince, the protector of your people, shall arise. There shall be a time of anguish, such as has never occurred since nations first came into existence. But at that time your people shall be delivered, everyone who is found written in the book. 2 Many of those who sleep in the dust of the earth shall awake, some to everlasting life, and some to shame and everlasting contempt. 3 Those who are wise shall shine like the brightness of the sky, and those who lead many to righteousness, like the stars forever and ever. 4 But you, Daniel, keep the words secret and the book sealed until the time of the end. Many shall be running back and forth, and evil shall increase."

5 Then I, Daniel, looked, and two others appeared, one standing on this bank of the stream and one on the other. 6 One of them said to the man clothed in linen, who was upstream, "How long shall it be until the end of these wonders?" 7 The man clothed in linen, who was upstream, raised his right hand and his left hand toward heaven. And I heard him swear by the one who lives forever that it would be for a time, two times, and half a time, and that when the shattering of the power of the holy people comes to an end, all these things would be accomplished. 8 I heard but could not understand; so I said, "My lord, what shall be the outcome of these things?" 9 He said, "Go your way, Daniel, for the words are to remain secret and sealed until the time of the end.

I’m going to step out of the pulpit for a moment to tell you about one of my enemies. I grew up with three sisters. My two older sisters are 9 and 6 years older than I am. My parents had stopped having children after they had two. That’s right: I’m an accident. Now a lot of people over the years have gotten concerned when I say that and they tell me: there are no accidents in the eyes of God. (They say that in just that tone of voice too!) I’m not going to debate that with them… its beside the point – because to my parents I was very much an accident, which is just a reality which never changed the fact that I was always loved… but having had an accident my parents didn’t want me to feel like the younger child who got left out of things so they had a fourth child: an intentional accident! My younger sister is only 15 months younger than I am and her name is Sally. For years I have joked with my parents that they could have stopped with me, I would have managed just fine. In middle school I even did a school photo project that introduced my sister Sally as “the enemy”. We’ve had our clashes, and like any siblings whose lives are lived so close together – we’ve always been each others best critics.

However, today – I don’t mention Sally to tell you about an enemy – but about how she is one of my heroes. That she is for me a wonderful witness of faithfulness, strength, and hope. You see my sister Sally, and her two children have mitochondrial disease. If you do not know what that is, don’t worry – almost no one else does either. It reared its ugly head in my sister’s life during her pregnancy with her first child, a son named Callum. It wasn’t diagnosed until about four years later, and in the mean time she was treated for a whole onslaught of problems she never really had. She had upwards of ten brain surgeries for pseudo-tumor cerebri… a condition they couldn’t fix because she didn’t have it. She was told by countless doctors, and even friends, that this was all just in her head. She was even investigated by the Department of Children and Family Services for making it up and creating symptoms in her children. All the while life for her got harder and more depressing, when it should have been at its best.

Let take a step back for a minute so I can tell you bit more about Sally. In a family that enjoyed athletics: tennis, gymnastics, golf, skiing… she was always the best of us. She was a junior olympian gymnast – she was always the strong and capable one. One thing that gave her even greater joy than sports was children. She loved children and spent every free hour babysitting. In fact my parents actually worried that in High school she would get pregnant just to so she could always have a baby around. She was a born mother. She brought home animals to care for, she cared for other people’s kids all the time – she was like the consummate baby sitter, and she even made friends with a teenage mother and brought that mom and her 6 week old son to our house to live with us. She was just born to be a mom – and she was, and is, great at it… on a good day. But here is the crime. She doesn’t get many good days. And her bad days are really bad. And here when her life should have been fulfilled with all she wanted it to be – life instead became an every day battle for enough energy to climb out of bed, eat, and make it through the day.

She’s had her validations – like when they discovered the actual chromosome that had mutated in her genetics and started her family’s battle with mitochondrial disease. And it wasn’t an empty victory – because it’s always good to confirm that you were right and so many others were wrong… and wrongfully accused you, and dismissed you. The victory however doesn’t come with solutions. There isn’t a cure for mitochondrial disease. It’s a disease that robs your body of its ability to correctly turn food and oxygen into the energy your cells need to correctly function. This happens differently in everyone who is affected by the disease – but generally it creates a body that is slowly – and sometimes quickly – degenerating and losing its ability to function. A child under the age of 5 who is diagnosed with the disease has only a 20% chance to live to the age of 20. This is the horrible reality my sister has had to face. That every day she wakes up and she has every reason to believe it will be worse than the day before. That any given week will likely involve a visit to the Emergency room. That each of her children needs to attend several therapy sessions a week, and sometimes even in a single day. That her two year old daughter still needs to have a permanent feeding tube in order to get enough nourishment to live – let alone grow. That every room in her house looks like a medicine closet. That in a life without enough energy to do basic functions she somehow needs to summon enough energy to go through superhuman efforts on a daily basis to attempt something like a normal life.

In the words of fellow mitochondrial disease sufferer, Brittany Wilkinson in her song, Energy for Life, “Every day I live gets harder than the day before, every step I take hurts just a little more. Every breath I make feels like it takes a breath away, every thought I have is trying to stop this endless pain, but I’m still here – and I’m still strong. This body may be breaking but my heart still beats on, I’m still here so I’ll still fight, with a never dying spirit that provides my energy for life.”

You can find the song on the internet… its now as much a tribute as a song of awareness and testimony, because Brittany died on September 6th of this year. And I know that my sister must, on many days, wake and wonder if today is her day – or her son Callum’s day… or her daughter Caleigh’s day… And yet my sister is my hero because, on her good days, she – like Brittany – has a never dying spirit that provides energy for life.

I do not share this with you to make you weep for Sally – though that would not be bad thing. I do not share it with you to simply share some of my pain on behalf of a family member. I share them because we all have Sally in our lives – and some of us are Sally. We all can, when we think about it, when we allow ourselves to, actually feel and acknowledge the pain and injustice and recognize the harsh, horrible, not-the-way-its-supposed-to-be reality of a life lived in knowing that each day has less hope than the day before… that the journey seems to be nothing more than a journey to death…

We all are Sally, or know her – in one way or another… and if you think you don’t – then you need to open your eyes and your heart a little wider… because there is more pain and more brokenness in the world than we are willing to admit. Your Sally looks different, struggles and suffers different, fights a different battle... maybe its cancer, or depression, or dementia, or life changing injury, or economic struggles and debt… it may, it will, manifest differently – but the darkness and the difficulty of seeing any hope: the despair is the same, and the questions that they provoke are identical.

Rough week

Our November is starting out with a bang. Last Saturday night, we were on our way home from a meeting in the Round Lake/Grayslake area when a buck was hit by a car traveling on the left lane and he landed on the right lane and then we turned and ran right over him. Frendell had no time to stop to avoid him as the other car had just hit him. It was a pretty gruesome experience for me and I must admit that when I opened the car door to try and get out and saw his hind legs right there, I started freaking out. Fortunately Frendell was very calm and he told me to stop freaking out as he was trying to get our car off the buck. His antlers punctured our radiator and condenser and damages are worth over $2000. The tow guy was very unprofessional and rude and he tried to convince Frendell to have our car towed to his friend's place. We told him we had insurance and asked him to tow it to a place that AAA had recommended, just a mile down the street from the accident. Froy came right away to pick us up and for that I am so thankful. It was very cold outside and we couldn't keep our car running because all the fluid had drained out. I am so thankful that God kept us safe, that we didn't get hit by another car following behind us and we didn't run into a ditch. The policeman was very nice and stayed until Froy got there. I was tired and quite disturbed by the whole thing. The policeman said they are having problems with deer lately in that area... overpopulation... one of their car also hit a deer earlier in the week.

I'm back to PT and this week we have a new therapist. He really tried to stretch me and had me do some strengthening exercises. I was very sore and had so much throbbing in y right arm for the next couple of days. Yesterday was a the very first time that I tried a full day schedule doing evaluations. I am so glad I was partnered up with Carol and Cheryl was our service coordinator. I think I was very anxious about how I would do and worried about remembering things. Carol had so graciously offered to drive me to all the evals and do you know what happened? You all think 'chemo brain' may be funny, but when I have moments that I don't remember things, I really hate it and I panic. Well, what a rough morning I had. Had a hard time sleeping the night before, so I had a hard time waking up yesterday morning. So, I was runny very late and finally Frendell and I were on our way. I texted Carol, telling her we were running just a tad late. She said it was fine, but she'll go to the back. That's when it hit me... she was at our house and we were driving to her house. How could I have forgotten that she was going to pick me up? We talked about it just the day before when she came over. How dumb and stupid could I be? So, we agreed that Frendell will just take me to the first home and we'll meet up there. Of course, I burst into tears and I looked at Frendell and asked him, "Do you really think I'm ready to do this?" He looked at me, grabbed my hand and said calmly, "I know you are. It will be okay. You'll be fine". So, we drove to the first home. I am looking around and discovered we were the first ones there. After 5 minutes, I get a call. It was Cheryl. "Glady, are you here already?" "Yes, we are right in front of the house". "So am I", said Cheryl. I told her, "I don't see your car". Cheryl said, "I will get out so you can see me, I am right across from the home". I am looking for Cheryl's car. I asked Frendell to look for both Cheryl's and Carol's cars. I don't see them. Finally Cheryl said, "Are you at ____ South _______ ?" I told her I am at the address that mapquest gave me. Well, as it turns out, there are address that are the same on the north and south sides of this particular street. Both Carol and Cheryl were already at the home and we were parked on the north side and they were on the south side. Aaaarrrrrgggghhhhh....... I really was crying by then. I just wanted to go home and go back to bed. I was already tired and we hadn't even started the day yet. Any confidence I thought I had mustered up had gone out the window, evaporated into tears.

I am so fortunate and blessed to have colleagues who believe in me and who are genuinely concerned for me. Both Cheryl and Carol were very understanding, as it is in their nature to be patient, and they told me to take a deep breath and that everything will be fine and will work out. I gathered myself together, kissed Frendell good-bye and thanked him for driving me and letting me know that he believes in me. It was a very long day. Two out of three kids were eligible and both of those evaluations turned out to be challenging. Sometimes I struggled to remember the order of things, how we used to things to make everything flow. Carol and I have worked together for so many years that we had developed some sort of system.... who will do what and who will ask what. I felt out-of-sync since I haven't worked with her in so long. I felt like my rhythm was off and sometimes I felt like my brain was so slow in processing things or coming up with things. After the second evaluation, I was tired and could've used a nap :-) But, we had a 3rd one to do... and it all worked out in the end. I am ever so grateful to Carol for driving me home because I don't think I could've driven home, especially with traffic. I just wanted to go home and lay down. I was so very tired and my right armpit was throbbing. So, that's what I didn't when I got home... went to bed and rested. I am so thankful that I am surrounded by colleagues who care about me and would help me out when I needed them. In spite of the rough beginning yesterday, it turned out to be a very nice day, productive as well. And everything did work out in the end. I am wiling to continue trying it out until I can get back to the swing of things. I didn't want to dwell on lost time, lost anything... I just wanted to make sure that I did the best I could and that I remembered to ask all the things I needed to ask. So now, on to typing up the reports.... and then on the way home, I got a phone call that I am getting audited... another stressor..... aaarrrggghhhhhh...... fortunately, I only have ONE file they're going to review... could you believe it? I've done one evaluation and they're already on it for review..... why did I hurry back to work again????

Autumn Leaves

As I am writing this, I am looking outside and watching some red/yellow/orange leaves either fluttering to the ground or waving as the wind is gently blowing. I can't quite believe that it's been a year since our mission trip to the Philippines. We left Nov 6th last year, 2 weeks after my first surgery from diagnosis. Before we left, we had meetings with the medical team and I learned that I had to have another surgery when I got back, since they couldn't get clearance to do radiation. Memories of those times came back to me, as I was back at the cancer center a couple of times this week, first for my shot and then yesterday for ultrasound. I told the nurse that the tingling and pins/needles on my feet, plus cold sensations continue, and now I do have the same sensations in my hands, although it doesn't happen as often in my hands. This past week, I am starting to notice that I have twitching on my lower lip.... sometimes it's annoying coz it wakes me up at night. The itching is also still there. I had to go for an ultrasound yesterday. I'm so glad the technician was so very nice and understanding and even though it was invasive, she was very professional and gave me time to relax. The worst part of getting tests done is the waiting... waiting for them to start, waiting for it to be done, then waiting for the radiologist to read it.... waiting to see if you the pictures were good enough or you need more tests done. I only waited for maybe 10 minutes for the doctor to look over my pictures but I it felt like 2 hours. When the tech came back, she said that the results would be forwarded to my oncologist and other doctors and they will discuss with me the results. More waiting...

Our heater broke down this week and I have been so cold, I have started wearing socks and layers of clothes to bed. Frendell thought I was ill for sure, as this is the first time I have ever done it. We have had to rely on a portable heater in our room, and the heating guy was finally able to come and fix the heat yesterday. I still sometimes feel cold, but at least my teeth aren't chattering anymore :-)

Monday, I was able to finally meet up with my friend, Bernadette, Bernie as I fondly call her. She and I worked together at Cook County Hospital when I first started there, when it was still called Cook County Hospital. Bernie is a speech therapist, married with 2 children. Beautiful family... she's into digital scrapbooking and she was kind enough to bring pictures with her so I could see her family. I have always loved Bernie's energy and confidence and I learned alot from her when we worked together. She would never allow me to be timid and be intimated and she would always tell me to be assertive and go for what I want. She's still the same Bernie, encouraging me to go forward and giving me energy and hope and encouragement. I hope it won't take a couple of years to see her again... I've missed her....

I am blessed in so many ways. I will have the opportunity to work again with Carol, and this time with our friend Cheryl, next week. I am so excited and yet apprehensive. They have been so patient with me and I am ever so grateful for their help. I am praying my cold does not get any worse. I am trying to do something everyday so that I can continue to build up my endurance. My PT has given me new exercises.. she's trying to see if the numbness/tingling on my feet are not from the scar tissue due to my back surgery. Tuesday night, Emillie and Don came over for a visit. Emillie has so graciously offered to help me raise money for Hope International, a charitable organization that lends money to people in 3rd world countries so they can have industry/business to earn a living. She made necklaces, bracelets and earrings to sell and she raised some money already for it. I am thankful to her, for she has taken the time to help me and this wonderful organization.. we had a wonderful visit and also saw some of Don's photographs. He has a good eye for taking pictures... I loved hearing his ideas for stories he wants to tell through pictures.

Frendell and I are packing up a couple of boxes to send to the Philippines. He was finally able to buy some Bibles from money that some of our members donated. We also have some clothes that our friends have donated, so I'm trying to put them all together in these boxes. I tell you, it is sometimes very hard to bend down while carrying things. I wished so many times that my sister, Ate Grace, were here. She is the expert balikbayan box packer and I could've have used her. I didn't know how to organize everything and in the end, I think I just dumped things in the first box. We are still waiting to see if more things will be donated, so I'm holding off packing up the 2nd box completely. If you would like to donate some things to be send to the typhoon victims in the Philippines, please let me know and we'd be happy to include your donations in our box. They have requested for towels, children's clothes, toiletries, school supplies... just to name a few.

Blessings are so easy to miss when I don't look for them. I am so grateful for my family, my friends, my church families... I am so glad we have health insurance and a car that still runs and warm jackets to wear... and for Presa, who lent me her coat last night since I foolishly forgot my coat when we left home.. I am thankful that I am now able to get around more, have more energy and as my PT said, "you don't look as puffy and swollen anymore". As I am vain, I am thankful I am not as puffy anymore. I didn't even realize and know that I had looked puffy.... why didn't any of you tell me????!!!!????

Okay, so that's how my first week of November has started.... busy and cold and rainy.... but I love fall and even though most of the leaves have fallen, I love the crispness of the air, the bright sunny days and longer nights. God has been so faithful and gracious and I am grateful that He gave me this time to be able to reminisce about my experiences from last year... I know it could've been a totally different story; I may not have been given the chance to tell my story... I pray and hope that as I am given the opportunity to share, that I will give honor and glory to His name and let others know that we all have hope if we take the journey with Him.

Uncle Harvey and Kuya Danny

This past week has been a tough one. Last Sunday was the wake and memorial service for Uncle Harvey. He was loved by so many and there were alot of people at his memorial service. It is one of those rare times when what they say about the person who has died is actually true and accurate... he really was a nice guy; he showed his faith until the end; he shared his love for God and shared his faith with all he came in contact with; he showed his love and care for his family; he had a positive attitude even when he faced so many challenges, even when his health was compromised. We will miss him very much and we have been privileged to know him. Our church family will not be the same and we will miss hearing him sing and laugh.. we will miss his encouraging voice.. Frendell feels the loss of a prayer partner... it brings to mind the verse found in Luke 6:44-45 "A tree is identified by its fruit. Figs never grow on thornbushes, nor grapes on bramble bushes. A good person produces good things from the treasury of a good heart, and an evil person produces evil things from the treasury of an evil heart. What you say flows from what is in your heart".

Today we visited Kuya Danny in the hospital. He is also fighting cancer and his journey has been the longest of anyone I know. His first surgery was in 2005. He just finished 14 radiation treatments and was hospitalized because his electrolights were out of whack. He met us with a smile and shared with us how God has really shown His faithfulness to him through his journey with cancer. He is thankful that he does not have alot of pain. Even though he gets tired quite easily, he reads his Bible and his spirits are lifted when his family and friends come to visit him. He said that he has surrendered his battle with cancer to God's hands and whatever God wills for his life, so be it. He has shown tremendous courage through all the treatments he's gone through.. and I believe he's had both chemotherapy and radiation therapy. I loved talking to him and seeing his smile and most of all, he encouraged me and reminded me that God's grace is sufficient for me. It always amazes me when I meet people who show the strength of character and the depth of their faith, even when in the face of adversity. It challenges me to work on my character, for our true colors show when we are faced with challenges and discomfort. I hope that I will produce good things because I have a treasury of good things from my heart.... two men who I have the privilege to call friends.. two men who have shown me faith and courage even as we took this journey through cancer together... Kuya Danny, my prayer is that God will grant us many more years with you...

Good-bye, Uncle Harvey

The past several days have been difficult for our church family in Chicago Fil-am, as Uncle Harvey has been fighting for his life. I know I talked about him here not too long ago, when we celebrated what he meant to our church family and had an anointing service for him as well. Today, he lost his battle with pancreatic cancer. Our church lost a warrior for God. He lived almost 7 months from diagnosis. Auntie Lita and all their children and extended family are devastated but they have shown tremendous courage and strength during this difficult time. Uncle Harvey has left a legacy of faithfulness and trust in His God, in spite of the cancer that has ravaged his body. He has given encouragement to me and other people with his positive attitude and his humor and his music. We listened to his CD last night and again today on our way to and from his house. I will carry his voice in my heart and I hope that if I am ever faced with the challenges that he has faced, that I will have his positive attitude and show my love for my family, my church family and my friends as much as he did before he died.

I am tired and yet I cannot sleep. I cannot help but wonder why him? why now? I know that in God's wisdom and in His timing, this is what His will is. As I listen to the rain drops breaking in the silence of the night, I know that God was there today, as we said good-bye to him, as we tried to comfort each other with the hope of seeing Uncle Harvey when Jesus comes. Death always gives me a different perspective... all of a sudden, all the things that I spent so much energy worrying about does not seem to matter anymore. What seems to matter is how much have I told my loved ones that I really care for them and love them? What seems to be important is, have I aligned my life with God so that I know I am doing His will in my life everyday. What seems to hinder me from finding peace and growth in my relationships is when I hang on to past hurts and grudges, instead of giving forgiveness and grace. I think about so many broken relationships that I've experienced and have seen others experience as well. I think of churches splitting and feelings hurt and judgments made and gossip spread and criticisms that have destroyed.... and in the end, when all is said and done, these things did not matter at all. What mattered were the words of comfort and hope and peace that were shared. What mattered was the support and love and friendships that have been experienced together. What mattered was the faith and prayers and trust in a God who understands all that we're going through and is there with us every step of the way.

"When peace like a river attendeth my way. When sorrows like sea billows roll. Whatever my lot Thou has taught me to say, It is well, it is well with my soul". Good-bye for now Uncle Harvey and I hope to see you when Jesus comes again. Thank you for your faithfulness... we will miss you and your smile and your beautiful voice.

because I knew you, I have been changed for good.....

God and Cancer by Frendell

Mahal has been writing articles monthly for the Filipino Newspaper "Pinoy". This is his article for this month of October. It touches my heart that he dedicated this article to me... I love you darling and thank you for going through this journey with me. I hope you all enjoy reading it as much as I did.

God’s Way of Dealing With Cancer and Sin

One of the most painful diseases one has to go through is cancer. Anyone who has witnessed someone die from this disease can attest to the gut wrenching pain one goes through before it’s over. What’s even more staggering is how many people have had to deal with cancer. Just last year, over 1.4 million died in America because of cancer and it’s been estimated that every five minutes, somewhere in America, someone is diagnosed with cancer. Very rarely do you meet anyone who has not been affected by what some people have called the disease of the century. I personally have had family members who have died because of cancer. I currently have family members who are subjected to chemotherapy, radiation, or medication to fight this disease, and by the time you read this article, one of my friends whom I just talked to today, would have already died from pancreatic cancer. It’s been my experience that when a family member is diagnosed with cancer, the whole family gets affected. If a family is a closed knit family, the experience becomes even more painful for each family member. As one sees the physical, emotional, and sometimes spiritual trauma one goes through, either as they personally fight with cancer or as they witness someone with it, the question that is usually asked is, “Where is God while we’re going through this experience?” Surely a God who claims to be all powerful and all caring would heal people from this disease, especially those who worship Him. But because it doesn’t happen, all thoughout the world, in every hospital and home, millions of people ask, “Why God, why me, why now, and why don’t you just do something about it?”

Because of one’s intense suffering, it’s very easy to come to the conclusion that either God doesn’t exist or He just doesn’t care. As a Christian, however, I have a very different view of suffering and I would like to share it with you. I understand that there is no way to answer all the questions about how God deals with cancer, much less to do it in 900 words or less. In the first place I’m not God and secondly I’m really not that smart, but I think we can know how God deals with this disease by knowing how He deals with sin.

Sin has many similarities with cancer.

They are both deadly. Once cancer or sin is in you, YOU WILL DIE, the only question is when.

The only way to win over sin or cancer is to have it taken away from you. For cancer it’s through surgery, with sin, it’s only through Christ.

I used to think that it was strange for Jesus to say, “If your eye causes you to sin, pluck it out…or if your hand causes you to sin cut it off (Matthew 5:29,30).” To Jesus, it is better for you not to have body parts and get to heaven than for you to have them and die. Any person who has been diagnosed with cancer knows the only way to deal with cancer is to take it out, by any means necessary. Even if it is through killing the good cells so you can kill the cancer cells, which is what chemotherapy is about, you need to do everything you can to take the cancer out.

Cancer affects every part of your body. Sin will affect every part of your life. It’s just a matter of time before a controllable disease, if it’s not dealt with, will become an uncontrollable one. Sin will eventually control all your relationships, your self-esteem and eventually your eternal future.

So how does God deal with sin?

He personally takes it out. I John 1:9 says, “If we confess our sins, He is faithful and just to forgive us our sins and cleanse us from all unrighteousness.”

He heals us from the effects of sin. That is what the cleansing us from all unrighteousness is about.

He promises those who trust in Him that He will bring them to a place where there is no sin, or cancer, and that place is heaven.

At the very least, if we can conclude that if God has a plan for sin that actually works, then he definitely has a successful plan for cancer. The journey we all must take would be to find out what that plan is. What I have found is there is a huge difference between people who trust God and His plan when it comes to dealing with sin and cancer. I think I can narrow that difference down to one word: HOPE. As each person eventually faces the effects of sin, or cancer, those who face it with God, face it with HOPE, those who don’t have a relationship with God, face it with HOPELESSNESS. Their reactions are quite different. Both sets of people cry, but the former can smile through the tears. Both are resigned to the consequences, but the former is looking forward to a new beginning. Both suffer immensely, but the former knows the pain is temporary, the latter thinks it’s the end. The former goes through the journey knowing their God is with them every step of the way, the latter experiences it alone. I can only pray that no one who reads this article ever have to face sin or cancer alone.

This month is Breast Cancer Awareness Month. This article is dedicated to my lovely wife and to all the brave people who face the hardships of cancer. If you have any questions or would like to respond to this article, please do so at www.pastorfrendell@gmail.com.

Pink Tea Luncheon Florida Trip 3

Jae was the emcee/host for this Pink Tea Luncheon. She also served as the moderator for the panel discussion that was held right after the luncheon. She did a wonderful job as emcee/host. I am very proud of her and all the hard work she and her team put into this luncheon. It was a very touching way for cancer survivors to be honored and recognized and to realize that so many people are supporting the cause to learn more so we can prevent and hopefully find the cure for cancer.

The two ladies standing next to Jae were the two breast cancer survivors who started the charity, Braz Cauz.. they were raising money so that women who cannot afford it will be able to still get mammograms for free.

Ate Baby and me... cancer survivors in our family... she just celebrated her birthday the day before... it was a wonderful time to celebrate life and be reminded that everyday is not to be taken for granted. We have gone through so much in our family in the last two years and I am grateful that we were able to attend this event together. We have been so blessed and I hope that I will never take it for granted. I pray that I will not cower when I am asked to tell my story, if only to give hope to someone else who may be going through cancer right now as well.

Girls day out at the Pink Tea Luncheon

Josie, me, Genie, Ate Baby and Jennifer

Each attendee received a pink box filled with goodies, like a perfume sample, compact mirror and nail file.

Genie getting her 'hot pink' hair trimmed...

Jae, as the emcee/host of the event, had to also have 'hot pink hair'

Table center pieces were little bras that were decorated in all different ways

Josie and Genie both took the day off to attend the event...

Pink Tea Luncheon Florida Trip

When I was in Florida, Jennifer took us to a Pink Tea Luncheon, sponsored by her hospital Fish Memorial Cancer Institute. There were about 500 people who attended this event, cancer survivors, their family and friends and supporters. They had a panel of experts in the field of breast cancer, from medical oncologists, radiologists, nurse practitioner to a plastic surgeon.

The fundraiser for that event was called Braz Cauz. It was an idea started by two breast cancer survivors, where they asked local artists to design bras (like the one above) and then auctioned them both at the luncheon and online. It was so neat to see all the creative things/ways that people used for the bras. The money raised will be used to pay for mammograms for women who cannot afford them and get lost in the system.

Josie and me with our boas :-)

Genie, Ate Baby and Jae (Mom and daughters)

The event was held was at a Marriott Hotel. They did a wonderful job setting up te place and serving a menu fit for tea, with salads and sandwiches and fruit and desserts. Delicious :-)

Celebrating Fall

I've come to expect it now, that whenever I travel, I get home and get sick. I think all the traveling has worn me out. The back to back trips to Florida, Georgia and Michigan wore me out. We got home Monday night and I was so exhausted I just collapsed in bed. Have had a cold all week and couldn't get up for the past 3 days. I'm finally feeling better today and decided to celebrate the cooler fall weather by baking an apple cake and an apple pie from scratch. It's been a very long time since I made pie crust and unfortunately I didn't find a vegan recipe, so it has good ole' butter. I just hope it takes good. Haven't tried it yet. When we were at Rachel's and Sean's house last Sunday, Sean made this amazing apple pie and he was kind enough to share his recipe with me. He inspired me to bake, so bake I did. I have missed baking and now I know why I haven't been able to do it too much. It was hard to take too many breaks while I was coring, peeling, slicing and rolling out the dough... so now, I am having lots of shooting pain and throbbing on my arm and right chest. But, it's all worth it, I hope :-) I did use organic pastry flour, which has whole wheat flour in it. So it's a little healthier I hope. I just hope it tastes as good as it looks :-) One of these days, I'll post the pictures of the pie and the cake :-)

I'm loving the cooler weather and the leaves falling. Fall is my favorite time of year. Today I was reminded to just 'be still and know that I am God'. My friends 19-year-old daughter, Elyssa, started an online inspirational website. www.messagesonline.wordpress.com. Please check it out. I needed to be reminded that. I've been restless and not feeling well and I was glad to be reminded that God is there and He is in control. No matter what happens, I know that He is there with me. I hope you celebrate fall wherever you are and celebrate God's faithfulness and goodness to us.

Florida Trip 5

Josie, with her 2 kids David and Amada and Olivia...

I was so glad that I could be there to celebrate Ate Baby's birthday with her, her kids and grandkids. They all helped her blow her candles out :-)

Oliva, Ethan, Max, David and Josie, Ate Baby and Amada...
Happy Birthday to you! Delicious marble cake... we had Italian food for dinner which was so delicious I couldn't stop eating the pasta and salads...

Ate Baby and Jae... hey, where's Genie and Kuya?

Ethan with his razor.. he's quite the athlete. That day, he rode his scooter, his bike and practiced his karate moves.... I got tired just watching him :-)

Florida Trip 4

Liv made me breakfast on Sabbath morning: scrambled eggs, toast and fruit. It was delicious :-)

Later on that day, we went to Josie's house and here is Amada beating me at the game "Go Fish!"... she's very good at this game..

Genie, Josie and Amada.... Josie was showing me her scrapbooks and picture albums... she's very creative too

This David, Josie and Wayne's son. He's so cute and very "malikot"....

Ethan and Maxwell (Jennifer and Kevin's son) are both taking karate lessons. They are also both very good at playing video games. So cute, these bosy are

Florida Trip 3

See how tall Olivia is now? Almost as tall as her Mom. I love how Genie and Olivia matched the colors of the posters.. They are quite the fashionistas.
We had a wonderful time at Epcot, inspite of how warm the day turned out to be....

The girls (Jennifer, Genie and Josie) along with Olivia, treated me to a wonderful time at Epcot where they were having their food and wine festival. The day started out nice and not too hot.. but by noon, the temperature had started to climb up into the '90x. Poor Genie was exhausted from pushing me all over the park. We had a great time sampling all different kinds of foods from so many different countries. It was surprising to see how much vegetarian options they had.. of course, we had to have dessert from France and funnel cake from good ole USA :-)

Olivia wanted to go with us and presented a great case on why she should be able to go :-) I'm glad she was able to come

Poor Genie pushed me for most of the day. They all insisted that I ride in the wheelchair to not aggravate my plantar fascitis. In the end, it was probably a great idea. When I got back home to Chicago, my left foot was very painful and I had to ice it and put oils 24/ 7 until we left for Atlanta. Can't imagine how painful it would've been if I had walked all over the park. Thanks for the ride, girls :-)

Florida Trip 2

This is Amada, Josie and Wayne's daughter. She has come out of her shell and is so outgoing now. Last time I saw her, she was clinging to her Mom's dress and didn't want to come to me. She loved that pink hair that Olivia gave her. All the girls wore pink hair in honor of breast cancer awareness month.. and me :-)

Olivia is Genie and Shane's daughter. I can't believe how much she's grown. She is a very good Ate and takes great care of the younger ones. She reminds me so much of Lauren... both of them are very patient and caring to their younger siblings/cousins...

I was so glad that Ethan agreed to be in the picture with us. He is Genie and Shane's son. He's very good at karate and video games. At first he didn't want to be in the picture with just the girls.. but in the end, he consented... quite the handsome boy :-)

Can't believe how much the girls have grown up? I can still remember them being Olivia's age when we all lived in California, both in Armona and La Sierra... now they have kids of their own... Josie and Genie, with Olivia

Ethan is also quite an artist. He is learning how to write the alphabet. I loved how they decorate their doors with their pcitures. I only wish I could have taken a better picture at a better angle. I can't wait to see what he'll have on his door the next time I see hiim :-)

Florida Trip

I love Olivia's door.. she's very creative and artistic and I can't wait to see what she does with this talent. Keep out of her room, boys!! She means it :-)

Ethan and Max takes karate. When I was there, Ethan had to learn a series of moves (can't even remember what it's called. Shane worked with Ethan that week until Ethan was able to pass and get his stripe. After I left, he went on to pass his test and earned his yellow belt! Hiya!!! I thought he was very smart to remember all the moves - he's only 6 years old!

Walking to baggage claim from concourse C at O'hare airport

Chicago lost it's Olympic bid

At the end of the trip, I was so happy to see Mahal waiting for me :-) thanks Darling.. I've missed you

I wanted to post my pictures from my Florida trip. I had a wonderful time with the family there. They pampered me and took such good care of me. It was such a treat for me to be with them and the kids and see how much they've grown. I am so blessed to be able to have the opportunity to be with family and learn from them and just enjoy these times together. Before cancer, it seemed like I was so busy with work and other things that going on trips like these were not always possible. I hope that I have learned to prioritize the things in my life a little bit better now. Hope was abundant as I looked at the kids faces and savored their energy... I hope that I would be blessed and be around to see what they are going to do in college, where they would travel to, who they would date, etc. God continues to show His grace and His faithfulness, sometimes in ways that surprise me.

Catalyst '09

Can't believe we're already back in Atlanta for Catalyst. Time is certainly flying by so quickly these days. Last year at this time, we had already received the news that my tumor was 'highly suspicious for intracystic papillary carcinoma'. Because we were coming here, my MRI was scheduled for when we got back and the first surgery scheduled for the 22nd of Oct. We were getting ready for our mission trip to Mindanao/Philippines.

Today, I had my shot, saw the oncologist, met with the nurse in charge of the study and had my blood work done. I guess I'm behind schedule on the blood work and will need to do it again in 8 weeks, instead of 12 weeks. Dr. Robinson answered alot of my concerns. The numbness/tingling/pins & needles on my feet she said may be just a natural part of my healing. She will monitor to make sure it's not a vascular issue. She does not think it's neurological issues at this time. Regarding the itching on the left breast: if it persists in the next month, we will schedule an MRI next month when I come in for my shot. She does not want to over test but she also does not want to under test. She said that the MRI will reveal other things that the mammogram did not. We shall see. I know she wants me to have peace of mind. I am scheduled to see the OB-GYN for some tests; she wants to make sure I will not develop uterine cancer, which is a possible side effect of my medications.

I asked Dr. Robinson if I'm being paranoid because I sometimes do get worried about the cancer coming back or getting cancer on the left side. She said, "No, it is very normal and expected actually. This is the reason why cancer is more of a chronic disease rather than an acute one; it's because people do worry about it coming back. Most people don't worry about their diabetes or high blood pressure but with a cancer diagnosis, it is always in the back of your mind. I'm so glad that she's very understanding and answers all my concerns. She is excited that I've started doing evaluations again.

After my appointments, Frendell & I took the train (blue to orange) to Midway airport. The walk was quite long from the end of the line to the ticket counter. But it wasn't too bad; there were a lot of people taking this line as well. We got there in plenty of time. It is now past midnight Eastern time and I am exhausted but I'm having a hard time sleeping again. It will be another long day tomorrow... but I am excited to be here and I'm glad we'll be able to attend Catalyst's 10th anniversary. We've been attending for 8 years now.... wow

Milestones

Last week was a busy week and in looking back, made me realize that although I have been be-moaning the length of my healing process, I have indeed, been blessed and fortunate enough to be on my way to healing. As I have said before, it was not only me who has suffered through this. Our families and very close friends, whether near or far, have experienced some sort of distress and break from the normal routines and structure due to my cancer. But out of everyone, Frendell has suffered the most. He has valiantly stood by me and never complained at the lot he had been given. He put aside his needs in order to meet mine. He sacrificed time and sleep to watch over me and make sure that I got my sleep and got to all my appointments. Even now, he still continues to drive me and re-arranges his life to accommodate mine. Unfortunately, this has taken a toll on him. And he has suffered from burnout as a caregiver. The healing process usually begins with acknowledging that there is a problem. And for several weeks now, he has gone and initiated getting help for himself. Last Thursday night, we went to the Wellness House and attended a seminar on how to deal with stress when you are a caregiver. It was a very educational and most importantly, an eye-opening experience for me. I knew the stress he was under, but in my pain, I neglected to appreciate what he was going through as well, having all the responsibility, not only for his job, but for me, our finances, our home. I appreciated so much hearing what the others there said of how they were feeling and sometimes they felt hopeless and unappreciated. I felt really bad and Frendell and I had a very nice long talk afterwards. My heart overflows from the love he has shown me, and I hope and pray that I will give him the same support and tender care as he himself goes through his healing process. Sometimes when I can't sleep or if I wake up really early, I just lay in bed watching Mahal sleep and I say a prayer of thanks for this man who has done so much for me. I can't help but fall in love with him all over again and if I were asked if I would do it all over again, I would say that I couldn't even imagine going through all that we've gone through without him by my side. I don't know how long it will take, but there is hope that the journey of healing has begun for Mahal. I am more than ever, grateful for the Wellness House. They have been there for us every step of the way. I wish so much I could do the walk and convince all my friends to walk and help raise money for it. The programs they offer and the emotional support they provide, for all who are touched by cancer, cannot be matched.

On Friday, another milestone was reached. I was asked to do an evaluation!! So for the first time in over a year, I went out to do an evaluation with Carol. I was very nervous and anxious about how it will all turn out. I was so scared that I would forget to ask the right questions (and I did forget to ask some) and that I wouldn't know how to explain to the parent what I was doing and what I meant. I am so blessed that I have my dear friend Carol to do my evaluations with. She calms me and reminds me that I have done this before. She makes me laugh and reassures me that things will come back to me. She helped me by doing all the handling during the eval and she asked the questions I forgot to ask. I couldn't have done it without Carol. And in the end, she even drove me home. Carol, from the bottom of my heart, thank you. I love how you have gone beyond our professional relationship and have shown me such love and support, even when I feel like I'm floundering. You always believed that I could go back to work, albeit slower than a turtle. Thank you for helping me and giving me courage to jump in. I hope that we will do many more evaluations together soon :-) After it was all said and done and I got home, I took a 2 - 3 hour nap. I was so tired from sitting on the floor and all the anxiety I experienced prior to the event. Even now, i am still working on typing the report and my mind feels like it's being stretched to the limit. I hope that it gets easier with time.

Earlier in the day, I had gone to the Coleman Foundation at the cancer center to meet with the nurse, Lisa. I always enjoy meeting with Lisa because every session with her is like going to my therapist. She is kind and exudes empathy. She answers all the my questions and will search for that right bra or prosthetic because she understands and knows how breast cancer survivors feel with their self-image. That day, she re-measured me for a new sleeve. I was so happy when she said that I went down a size!!! yeay!! that means that the lymphedema is slowly going down. Although I still have pain and numbness and tingling, I have more mobility and as Linda (my awesome PT) told me at my last session, "you have less tightness in your right armpit". Woo-hoo!! My arm gets tired easily... in fact, I can't write a whole thank you note without taking a break. But I am using it as much as I can so that I can gain arm strength. Even playing the piano is tiring...but I am glad I can still play :-)

Tomorrow, I am going to Florida to visit family there. Even though I am anxious about going through security again by myself, I am excited to see everyone there. Another opportunity for distraction from life. A year ago yesterday, I had my biopsy... and I remember that I was trying to distract myself during the days that followed.. hoping that the news would be good and that I did not have cancer. It was not to be. Even though things did not turn out as I wanted them to, tonight I am so grateful that I have celebrated significant milestones... a sure sign that hope is going strong in this journey through cancer.

A Year and A Day

Yesterday was a year and a day since my last mammogram. As I walked up to the women's health center at the outpatient facility at Loyola Medical Center, it felt like deja`vu. The same woman was sitting at the reception area and checked me in; the same couches were all lined up along the eastern and western walls of the hallway and even the same bulletin board was still there, arranged the same way, with the same colored balloons, displaying information and handouts about breast cancer. One of the differences is that Frendell did not come up with me this time. The biggest difference is that this year my life had been turned around. I was shown to the same locker room, changed into a hospital gown and waited. This year, the waiting area was full... no vacant chair at all; in fact I sat in my dressing room. Last year, there were alot of empty chairs when I was waiting. The anxious looks on the women's faces surrounding me were the same as last year. I looked around and wondered how many of us had been diagnosed and how many will still be diagnosed. Even the way I answered the questions this year was different.

Family history of breast cancer? last year: No. This year: Yes - me.

Do you have or have you been diagnosed with breast cancer? last year: No. This year: Yes. Two different kinds.

And so the questions went on.

Things have changed for me. The technician who did my mammogram was very nice and accommodating. I told her that I was still having quite a bit of pain on my right side and on my stomach, so stretching in different positions is not always easy. She was very gentle with me and tried to take the pictures as fast as she could. I told her that I am a little concerned because I have had itching since July and my oncologist wants to make sure everything is alright. She said she couldn't blame me for worrying. I told her that I hold on to the same philosophy I had last year when I came for my diagnostic mammogram: "It is better to know what I have so I will know how to deal with it".

I didn't have to wait too long for the results. So far, it's normal; they can't see anything wrong. I have been advised to talk to my oncologist about the itching and stinging sensations I am experiencing, almost on a daily basis. Dr. Robinson may recommend further testing if she determines it's needed.

A year and a day... so many things on the outside may look the same and yet I know that for me, a year ago was the beginning of my life turning upside down.