Light the Night Walk

On November 12, I, along with 14 other walkers on my team (team #fLOUrish) and their kids in tow participated in the Leukemia and Lymphoma Society's Light the Night Walk event. The goal of the Light the Night Walk is to raise awareness of blood cancer and raise money to fund treatments that are saving the lives of patients today. Every walker gets to have a lantern- supporters walk with red lanterns, survivors walk with white ones, and those carrying yellow lanterns symbolize remembrance for loved ones lost due to cancer. I signed up for this walk many months ago because I wanted to be involved in LLS and give back to the community as a token of appreciation for all their support during my journey. I didn't do much in terms of fundraising but as the event drew nearer, more and more people found out about it and signed up to be part of team #fLOUrish to walk with me. We went from having a team of 4 people to 17 people in total! My personal goal was $500 and I set our team goal at $1,000. I figured I could easily get to $500 and if others signed up, $1,000 should be fairly easy to attain. Little did I know that we would blow that goal right out of the water. In fact, not only did we more than raise the $1,000, as a team, we raised over 12 times that goal and ended up with just over $12,000 in total funds raised! This was rather suprising considering just two days before the walk, we were just under the $5,000 mark in terms of dollars raised. A whopping $7,000 came in on the last two days thanks to the great efforts of my team and reaching out to their network of family and friends. I ended up raising about $2,700 for myself, more than half the amount came in the last few days too. It just showed to me how everyone was so supportive of my journey, regardless of whether they knew me or not. The $12,105 total meant that our team came in at #3 in terms of dollars raised out of 225 teams! We surpassed the total of many corporations, including my very own Wells Fargo!

The route for the San Francisco walk was around AT&T Park. I really enjoyed the Walk as I had many of my close friends and supporters around me and because we had lots to celebrate. It really was a special night as I had a lot to be thankful for and lots to celebrate given that I had just gotten the results of the clean scan and was just about near the end of my chemo treatment. ABC7 News was there and they took a team pic of our group which made it up on their website. Here's the link: 
http://abc7news.com/society/photos-abc7-news-at-light-the-night-walk-in-san-francisco-/1082063/#gallery-3  (I ran into an old college friend who works for them and I think she probably had a say in what pics to use!)

Thanks again to everyone for their kindness and generosity in making the Light the Night Walk a success and one that I will remember for a very long time.

 

 

 

It's All Clear! It's All Clear!

I got my PET scan results today and...it's all clear! There is no sign of the tumor anymore in my abdominal area (see lower pic)! I must say it was a huge sigh of relief. My oncologist showed me the before and after pictures and the black mass that was around my abdominal area is completely all gone in the latest pic. The only black that showed up was in the kidney but that was completely normal as that was my urine.

My oncologist also showed me something else that the radiologist and him found "interesting". It appears that there is some "activity" in my right kidney-- the kidney that they originally had stated was no longer functioning because of the tumor blockage. Where there used to be a black mass (because it was completely "dead"), it was all clear again and a minute trace of "activity" or urine passing through (see top pic). So, there is still hope that I may regain a bit of function back in my right kidney!! This unexpected bit of good news was like the cherry on top to the already great news that my tumor was gone after only four chemo sessions!

He said that because my scan came back all clean, there was no need to scan me anymore after my treatment is over. This is because he'd rather not put undue stress on my body by doing any unnecessary scans (he stated that one PET scan is like getting 100 x-rays). I asked  him what about follow up scans 6 months from now or a year from now. He said he recommends against it because for the same reason that it exposes the body to radiation and in some cases (5% of patients) can cause second cancers. We will just do the normal regular 3-6 month check ups and draw blood to see if anything is unusual.

The only thing left to do now is to get a bone marrow biopsy to see if the cancer is also gone from my bone marrow but he said we won't do that until after my treatment is over, so most likely before Christmas (my last treatment is December 4). But he said that he also expects the chemo treatment to be effective on the bone marrow as well and he expects that it will be negative. But of course, being the doctor that he is, he did hedge it that we are only taking a small section of bone marrow (my pelvis) and while it could show to be negative, there could be traces of it in other parts of bone marrow. This is probably the only part I don't like about him- he states just the facts too much and doesn't want to give me too much encouraging news! My wife was there for the appointment and she saw first hand how emotionless he was as he was going over the results! Haha. Nevertheless, it was a GREAT day today. What I worked so hard for the past few months, going through treatment and staying positive has all paid off. My tumor is gone and if not for my bone marrow, he would have declared me in complete remission!! This was the best case scenario possible and the fact that I may have some function back on my right kidney was an added bonus to this awesome early Christmas present!

Now, it's just two more sessions to go and I'll be all done! It'll be time to celebrate very soon and I'll be able to even drink to that after my treatment is over. Good thing we just built a custom wine cooler and cabinet at home. Time to stock up on that red wine... hehe.



Before pic on the left and Friday's scan on the right. The black
tube is my nephrostomy bag. The black on the right is my kidney
but that's normal. The mass that was on the left is all gone.

The Waiting Game

Today is the day before my PET scan and to say that I'm not anxious would be a lie. I get scanned tomorrow morning to see how much the tumor in my abdominal area has shrunk. However, I won't know the results until Monday afternoon when I meet with my oncologist so it's gonna be a few more days of waiting patiently. I am hoping for the best results possible-- that the tumor will be all gone or only some traces of it left and the two remaining chemo sessions I have left will kill off anything else. My oncologist is hopeful that this will be the case so I'll just have to keep thinking positive thoughts. I will update everyone as soon as I know.

I haven't updated this blog in over a week as the scan has preoccupied my mind and also because I've had a few relatives visiting me from Australia to check on my well-being. My support network reaches far and wide from Australia to Hong Kong, Thailand, Singapore and Malaysia and it's great to know that even thousands of miles away, I have people thinking of me and rooting for me.

When my uncle and cousin were here, we just spent a lot of family time together catching up. As most people know, I spent my childhood years in Australia and still have a lot of family back there. I try to go back every 6-7 years, the last time was in 2012 when I took the whole family there. My son learned to walk while he was in Adelaide!

When my extended family get together, they always talk about the "old days" of living in Cambodia and growing up in Australia. This is how they reminisce, much like how my high school friends and I always talk about the good old Aragon High days when we get together. My uncle provided some insights about me that were really thought provoking. He said that I have three lives. I've faced enormous challenges in my life and now I'm facing another big one. The first one was when I was born. The doctor dropped me upon delivery leaving a bloody gash in my head (this may explain a lot of things about why I am what I am today). Everyone thought I wasn't going to make it but somehow, the wound healed and I survived. Guess I was just too stubborn to go away that easily and that thick-headedness that people know me to be was born at birth! The second life was surviving the Killing Fields. My uncle and mom said that during the war, I would go into the rice fields at night to steal rice grains which my mom would grind up to make me porridge soup. I must have been only 4 then because I don't remember much at all but this is what they said I did in order to have food to eat. I guess I was lucky that I didn't get caught or anything as they would have surely beat me to death had they found out. The third life of course is now and trying to beat cancer.

I guess what my uncle was trying to say is that I'm a survivor. Not that I would want to be compared to a cockroach, but I guess I am sorta like one in the sense that no matter how tough life has gotten, I've found ways to survive. You can't kill me off just yet! I've got too many things to live for-- my kids, my wife, my family, and my friends. These are all good things worth surviving for and for that, I will continue to stay strong and positive and beat this thing.

We have an oncologist sighting!

Today, I had my fourth session of chemo and I got a nice surprise- my oncologist visited me for the very first time since I started treatment. And it only took him 4 sessions! He came by to say hello to see how I was doing. Prior to that, he had never visited me before. Even my nephrologist (who has nothing to do with my treatment except to ensure my kidney was holding up okay during treatment) came by on my first day of chemo to say hello. I guess I shouldn't be mad or too concerned...it's not like they pay him to be my best friend and to make me feel warm and fuzzy. Everyone has asked me if I have a good oncologist. I'm really not sure what that means. My chemo is pretty standard so I'm not sure what having a "good" doctor means. They also say if I don't like my oncologist, they can refer me to someone better-- whether here at Kaiser or at a different hospital like Stanford. We actually discussed this in my support group this past week-- the difference with having a good doctor and a bad doctor. Two of my support group members said they had terrible experiences with their oncologists but I think it had more to do with their "bedside manners" as they were looking for more for the warm and fuzzy, the "give me a hug and let me know that everything's okay" and "treat me like I'm an individual and not a number on a chart" and I get where they are coming from but I'm really not concerned whether my doctor asks me how I'm feeling (although he did asked me that today) and does a lot of hand holding. I just need him to give me the facts, give me the right diagnosis, and make sure my treatment is effective. It's the nurses that administer the chemo treatment based on my doctor's recommendation so as long as he's got that right and can put my cancer in remission, that's fine with me if he doesn't come to visit me or that it's only been the fourth tine I've seen him since my initial visit with him. I think he's an okay oncologist. We're not going to shoot the breeze together or have a drink post chemo (once everything is in remission should everything go well) but that's okay with me. As long as I'm in remission I'm good with that. The one thing that I give him a lot of credit for is that he's very responsive. Every time, I email him with any questions, he gets back to me the same day and that's all I can really ask for and what's important to me-- someone who's very responsive. That being said, it was good to see his boyish grin (he's in his mid-40s) pop in and say hi.

I asked him a few questions about my PET scan that is scheduled for November 6 and what the expectations were. He said that his expectation is that the lymphoma will be gone and there won't be any traces in the pet scan. The two remaining chemo treatments will be to kill off everything that may have not shown up on the scan. However, that's the best case scenario. If there are still traces, that's fine too as the two remaining sessions will be to wipe off everything else. However, if they see that the tumor has not shrunk and is still there, then we'll have a discussion about perhaps pursuing other treatment options that are more aggressive. You mean to tell me there are more worse treatment options than chemotherapy?? So, I asked him does it appear that it's going well and of course, being the way he is, he hedged his answer and said that it seems I am responding well to treatment but we won't know until the scan and we'll go from there. I guess all I can do is think and stay positive and hope for good news on November 9 when I see him to go over my test results.

Other than the nice surprise visit from my oncologist, everything went well today. I got the same nurse (again) (the one that spilled my ratuxin) and she was jamming. I asked her if we could slow my IV drip down as perhaps that's what caused my nausea the last time as she had me done at 2pm. She didn't think it was from the IV drip going so fast so instead of slowing it down, she got me out at 1:45pm (this after me showing up 30 minutes late this morning). Man--  this woman works fast!! Fortunately though, I didn't have symptoms of nausea, at least not as much as last time. I had the usual foggy head feeling but that's par for the course on chemo days. I took a nap once I got home and now I'm feeling a little refreshed. I still have the foggy head feeling but the minor nausea feeling is gone. I'm planning to go for my daily walk after dinner today with a few friends as I missed doing it this morning and as I think it'll be good for me to get the exercise in and get some fresh air. And..uh..truthfully, it's because I have a FitBit work week challenge and I was the leader but am now 15,000 steps behind everyone!

The other interesting update this past week is that earlier in the week, I had my nephrostomy tube exchange. This is something I do every six weeks to prevent infection of my kidney from the catheter. It's pretty routine- I get admitted into the hospital, get changed into my hospital garb and then I hang out for about two hours in the bed to wait for my minor surgery procedure. The whole procedure is fairly quick-- about 15 minutes-- and they discharge me an hour after that. It's my second exchange and it also appears to be my last. As my last chemo session is Friday, December 4 (yeah!), they (and me) are assuming I'll be all done with treatment after that; therefore, we've scheduled December 15 for the tube removal. Imagine that, less than two months from now, I won't have a hole in my kidney anymore and can actually take a real shower again...and, hopefully if all goes well, I'll also be in remission!!!



My friend Brian with me at my nephrostomy tube exchange. Since they won't
let me drive home as I get sedated, he was my designated driver. Thx Brian!

Last week, I received the best news since my diagnosis. I went in to go see my nephrologist last Thursday afternoon. As I have mentioned before, my kidney is another issue that I have to deal with, even after my chemo, and recently, it's given me more concern than the lymphoma. When I first went in to see my doctor, it was because of stomach issues which turned out to be issues with my kidneys. With further testing, it was determined that the tumor growth had blocked both my kidneys and that the right kidney had permanently failed a long time ago due to the blockage. Therefore, I had been working off of one kidney and when I went in, my nephrologist said I had about 15% function left and I was looking at dialysis. Once I started my treatment, it had improved some and had regained some health to about 35% function, but my main concern now has been what happens post-treatment and I'm in remission-- how much longer can the remaining kidney hold up before I have to start dialysis? The doc already said I wasn't a good candidate for a kidney transplant anymore due to my being a cancer patient, so would I be looking at dialysis for the rest of my life? I had done some research- albeit not a whole lot as I've found, just like my lymphoma, that there is a ton of really negative information out there, but through the National Kidney Foundation, I learned that dialysis is needed when the kidney has about 10% function left. Well, I wasn't all that far from the 10% when I first went in but now at about 35%, what was my long-term outlook? If I'm not a good candidate for a kidney transplant, then what? When my nephrostomy tube is taken out, will the kidney's function get worse? Truth be told, these were the questions that has kept me up at night.

Well, I went in to see him (the same kidney doctor that gave me my diagnosis of lymphoma over email) after he got back from a month long vacation and it was probably one of the best visits I've had to a doctor's office if you can believe that. He said that based on my creatinine levels (which is a measure of how well your kidneys are working) and how they have dramatically gone down over the last few months (it's now at a steady 1.83 from a high of 6.62), he estimated that I had close to 50% kidney function left and assuming that the kidney function will decrease over time at about 1% per year, I was looking at my 70's before I would need dialysis. Well, that was the best piece of news I've heard in 2.5 months!! You can't imagine how relieved I was when I heard that from him! The only caveat he said was that as long as I maintained my strict diet (i.e. no sodium, no friend food, no dairy and avoid foods high in potassium and phosphorus), I'll be just fine. Considering, I'm now 3 months in to my strict diet, I'm just so used to eating a certain way now that I don't think I should have a problem at all maintaining my diet. At the end of the day, it's just better for me in general.

I did ask him, how flexible I could be now that my potassium, phosphorus and sodium levels were now at normal range again- e.g. can I have pho (my favorite Vietnamese noodles), can I eat pizza, sushi, etc. to which he replied, "well, if it's your birthday or a special occasion, then sure, why not" This was really the best news I've heard. It was great to hear that I didn't have to give up everything completely! (I looked on the National Kidney Foundation's website on foods to avoid and it lists beer and ale as beverages to stay away from as they contain high amounts of phoshorus but it didn't list wine on there...)

My nephrologist then asked me if he could write about me as a case study and submit it to some publication. He said in his 20+ years of practicing, he's never encountered a patient whose tumor was so massive that it blocked both of the kidneys. Uh...I guess that makes me special? He said he wouldn't use my name, so I said that was fine. I guess that I should feel honored to be featured and written about.

I'll have to see him post chemo treatment when hopefully by then, the cancer will be in remission, and we'll check on the kidney again and go from there. All in all, it was a great visit and again, it's the best news I've received since my diagnosis. Positive attitude (and a strict diet) certainly goes a long way!

Halfway through!

I had my third chemo session last Friday and while it was a bit rough this time around (I felt really nauseous and woozy afterwards), I'm now reached the halfway point of my treatment so that's a little milestone in itself. And guess who I had as the nurse this time? Yep- it was the same nurse as the first session-- the one who messed up on my Ratuxin mix and let it drip on the floor for 1.5 hours. This time around, I made sure that I watched her every move and was constantly checking to see if there was any spillage on the floor! She did a great job this time around and the chemo went smoothly with no hiccups. She might have done too good of a job as she pumped those drugs in me and I was done by 2pm- the fastest I've had my chemo to date- and probably the reason why I was so nauseous. I think I just had too many drugs siphoned into me at too fast of a pace. After the session, I went home and rested and went to bed really early as I was still feeling the effects. The next morning, I woke up still feeling nauseous but after forcing myself to wake up and go on my daily walk, I felt much better after.

Up to now, I've talked to many people who have gone through chemo treatment and they have told me some horrific stories about what they experienced. One person I talked to yesterday had medium grade B-cell non-hodgkins lymphoma and he said he experienced everything- from being extremely fatigued where he was sleeping most of the day, constant nausea, losing his taste buds (he said everything he ate tasted like cardboard so he could only eat really salty or really sweet foods), getting extreme mouth sores and on top of that, getting pneumonia! I really do consider myself fortunate that while I have experienced those symptoms, they have been very mild and very tolerable. But there's a part of me that also worries whether the chemo and fighting the cancer cells is working or not because my side effects have been very mild. I guess I'm about to find out as I got a call earlier today and they have scheduled Friday, November 6 for my PET scan. So, after my fourth chemo treatment on October 23, they'll scan me to see my progress. This will be the first true indication of how well I'm responding to treatment. I hope that since I seem to be doing so well (relatively speaking), that I'll have really good results and the tumor in my abdominal area will have shrunk dramatically. Fingers crossed.

Before I went in for my third treatment, I do a routine blood test so that they can measure my white blood cell count, red blood cell count, platelets count, and hemoglobin levels. My WBC count was extremely low this time around so most likely I'll have to get shots of neupogen this week to help boost my WBC count levels. Since it's so low, I'm even more careful of being around large crowds and close to sick people. As I mentioned, one sneeze could do it for me and I'll end up getting pneumonia or the flu like the guy I talked to yesterday. What sucks is that I can't even get a flu shot to prevent the flu because my body can't handle it at the moment!


However, despite all that, I still managed to hang out with my friends over the weekend and went to the Giants game this past Saturday and the 49ers game on Sunday, although I did wear a mask
to and from the stadium. It was good hanging out with my friends; the weather was great at AT&T Park and the Giants won. The Niners game really sucked but we had a great time anyways as we got hooked up with VIP tickets courtesy of my friends Sandy and Harry and we stayed in the VIP lounge most of the time where we saw Barry Bonds and Ronnie Lott.

So, how do I feel now that I'm halfway thorough my treatment? I'm relieved as I've made it this far and I have a renewed sense of optimism that there is an end in sight-- a goal that I'm trying to attain is reachable and I'm halfway there now.

A day in the office

Yesterday, I went into the office for the first time in two months to shave a friend and work colleague's head. Dean found inspiration from all the head shaving parties that my friends and I participated in over the last month and wanted to do it as well. He came up with the idea of raising money to shave his head. At Wells Fargo, during the month of September, we have the Community Support Campaign, where team members donate money and their volunteer time to their favorite charities through various fundraising activities and community service events. It is the largest employee giving campaign in the U.S. Dean decided he would help raise money for the Leukemia and Lymphoma Society on my behalf. Word quickly spread throughout the office and everyone to contribute to not only a worthy cause but to also see Dean with no hair! He was able to raise over $1,000 and so yesterday, I went into the office to do the honors. I bought new clippers just for the occasion!

Dean and I pose after his head shaving.
You can view the video of the head shaving at the link below 

When I arrived at the office, everyone was there in a conference room to greet me. It was such a nice surprise to see everyone. They had turned out to see this "historic" event and to see me. Although somewhat strange to be back in the office after so long, it was really good to see everyone and I got the opportunity to catch up with some of them.

Although I have missed being at work and missed seeing my work colleagues, I have decided that it's in my best interests to continue my short term disability. I have come to this conclusion after much considerable thought. I'm not even half way through my chemo treatment yet and I still have no idea how well it's going. I think it's going well- I feel fine, my doctors tell me I'm doing well and I've had relatively few side effects from the chemo treatment- but we don't know if the tumor is shrinking or not. It won't be till after my fourth chemo treatment (I'm doing my third one this Friday) that they'll give me a PET scan to see my progress so right now, that will happen towards the end of October. I think it would be better to wait until my scan results and reassess from there if I'm ready to go back to work. I figure I'll be working for another 20 years (hopefully only 15 if all goes well), so why try to rush back in after only a few months when my treatment isn't over yet. I do feel guilty about not going back especially after I told my boss I thought I was well enough to go back but I reminded myself that it's a time for me to be selfish-- my health is my #1 priority and there really should be nothing selfish about focusing on one's health! My treatment has been going well it seems because I have a good routine going and I want to be able to keep that up and continue to focus on my health.
Fortunately, I work for a really good company that values its team members and I have a great team that's been very supportive. After I told my manager this, he was very understanding and agreed that we should reassess things after my scan and go from there. 
So...as I have another month to go, I hope I'll continue to have walking partners and lunch buddies to keep me company as I reach almost the halfway point of my journey.

Link to head shaving:
https://plus.google.com/u/0/photos/111698211915376682526/albums/6200153795931289473/6200153798735427058?pid=6200153798735427058&oid=111698211915376682526&authkey=CMnfy6Tx4NWDlQE