Almost Back to Normal

This past Monday, I took a normal shower for the first time in 4.5 months and it felt great! It felt great just to be able to stand under a shower head and not have to worry about covering parts of my body up. Last Friday I had my nephrostomy tube removed which allowed me to take normal showers again. It was a simple and quick procedure and lasted all of ten mintues. I was really happy to be rid of my tube and "pee bag". The urologist was almost recommending that we keep the catheter in and just put a cap on it in case there was a reason to put the tube back in but I was adamant about taking it out. I was all done with chemo and my "plumbing" seems to be working just fine so it was more than time to take the tube out. I was happy that it served a vital part of my chemo treatment and helped my kidney process the drugs and what not but I will not miss having the tube in my kidney. It really does feel good to not have an extra appendage and not have to worry about sleeping awkwardly on it or worry that the bag might leak (I've had a few horror stories about leakage most notably on the flight back from Cancun and I feel bad for whoever had to sit on my seat on the next flight). With the tube and bag out, it feels like everything is almost back to normal. My tumor is gone, my chemo is done, my bag is out, and my hair and eyebrows are starting to grow back out. I'm back to work full time and it feels like I haven't really left at all. I guess there's really nothing wrong at all with getting back into the routine of things. The first thing I wanted once I started treatement was for everything to be normal again and I think I'm almost there now...

I saw my neprologist today and he was pleased with my progress. The kidney is fine and I really don't have to worry about it anymore. I just need to maintain my healthy and strict diet and get plenty of exercise and I'll be fine. Just one more visit on Jan 14 for my bone marrow biopsy and that should be the last of the hospital visits and then it will be just routine check ups from there.

2015 was not the greatest year for me but despite my diagnosis and the challenging treatment I went through, I'm still thankful and grateful for everything that I have. The thing about cancer is that it makes you realize that it can take everything away from you that you hold precious and it also makes you appreciate everything so much more. I am thankful that I have good health, my family, my friends, and everyone else that has touched me on my journey. Without everyone's support, I don't think I would have fared as well as I have. Thank you everyone...and I mean that sincerely from the bottom of my heart.

All done!

Last Friday, December 11, I finished the sixth and last cycle of my chemotheraphy. It was a rough one as I've been nauseous the last few days. They say that the side effects are cumulative and gets worse after each session and I think there's truth to that as I ended up in the hospital after my fifth session and now I'm experiencing more nausea than normal (I've actually had to take my second anti-nausea medicine for the first time...never had to use it before this past session). But you know what, some nausea is not going to dampen my spirits because I'm all done!!! No more chemo sessions after this and hopefully for a very very very long time! I'm really relieved that I'm all done with my treatment and aside from a few daily injections of neuprogen to boost my white blood cell count, I won't have to sit in that reclining chemo chair anymore.

It's such a huge relief, but that might be an understatement. It's been a grueling up and down roller coaster journey the last 4.5 months but I am finally near the end of my cancer journey and can finally see everything winding down. Fairly soon, I can get back on track with living a normal life. There are just a few more steps I have to take...the first being getting the nephrostomy tube out of me (which will happen this Friday) and then getting my bone marrow biopsy around the first week of January to confirm that the lymphoma is also gone from there as well. Taking the tube out will be another milestone in and of itself as I've had that thing in since end of July and I am excited about my procedure on Friday. After that, I'll be able to take my first shower in almost five months!

Now that I'm all done with treatment, I'll be celebrating this Christmas and come New Year's Eve, I'll be able to have my first glass of wine. I'm really looking forward to that! My wine fridge is stocked so anyone want to celebrate with me, just drop me a line and come on over!

Thank you everyone for your love and support! I have many more thank yous to write but will save that for another post.

Three Days in the Hospital

So I spent my Thanksgiving weekend in the hospital at Kaiser Oakland. Not quite how I envisioned I'd spend my Thanksgiving weekend. It's not that I was looking forward to spending it on a shopping spree and partake in Black Friday and Cyber Monday in all its glory (I stay as far away from any shopping until 2 days before Christmas) but being hospitalized wasn't also on my agenda. Rewind to the Wednesday right before Thanksgiving. It was my first week back at work (yes, I am back at work) and I had been in the office the first two days. I decided to work from home on the third day given that Thanksgiving was the day after and also, being only my first week back at work, I wanted to take it easy and not overdo it. Well, I started experiencing some pain in my lower abdomen and that pain progressivley got worse to the point that by Thanksgiving Day, I had trouble moving around. It really hurt every time I got up to walk around or move my body in any way. I suspected it might be something bad because I had not experienced that much pain before but I just tried to deal with it. We had Thanksgiving dinner at my friend's inlaw's place ( I have been celebrating Thanksgiving with my friend since junior year in high school and now we celebrate it with his inlaws) but by Friday morning, the pain had gotten worse. I called up my doctor and went in to see her the same day.

She wasn't sure what was wrong with me so she had me do a series of blood tests and while we waited for the results, she ordered a CT scan to be performed on me. By Friday evening, we got some of the blood tests back (it showed that my white blood cell count was almost non-existent) and the CT scan cambe back normal, yet they still were not sure what was wrong with me. By this time, in addition to the lower abdominal pain, I had also developed a fever. My temperature was 101. Because of the combination of those two things, they didn't want me exposed to any more germs or infections due to my very weak immune system so my doctor recommended that I be admitted to the ER and hospitalized. Just great. I was admitted at 530pm Friday evening and after another round of blood tests and two IV lines (they couldn't get the first IV line to work- suprise, suprise) later, I was moved to a regular room. They told me that I would be staying overnight at the least until they figured out what was wrong with me. They suspected I had some type of infection and therefore, I was put on antibiotics and pain medication. The pain medication was to reduce my fever. They also gave me neupogen shots which would help boost my white blood cell count and heparin injections (blood thinners) which they shot into my stomach. I've never been injected in the stomach beofore and it was not pleasant at all (it hurt like  hell).

It was my first time ever staying overnight in a hospital. I wasn't really sure what to make of it except to think that there were probably far worse reasons to be hospitalized other than an infection and a fever so I probably should consider myself lucky.

The next day, they ran more tests on me and drew more blood. They also told me that it would be at least Monday before I was released. I still had my fever which kept on coming in and out. However, by Sunday morning, it was all gone. I tried to make the most out of my hospital stay...it did give me an opportunity to watch all the football I wanted-- colllege on Saturday and NFL on Sunday, so I guess that was a silver lining. The hospital food was crap (has anyone ever had good hospital food??!), so I had to ask my wife and friends who visited to bring me food. By Sunday evening, they confirmed that it was indeed an infection and that it was a bladder infection. I was still on antibiotics but now at least, it was more targetted towards my specific infection. They prescribed me a take-home antibiotic which I would need to take for the next two weeks.

During my entire three days stay, I was pricked a total of 14 times- between the IV lines, injections, and blood draws. I could literally (and visibly) count all the pricks on my arms and stomach! I'd be lying to say that my hospital stay was pleasant but at least, they found out what was wrong with me and had a plan of action to make me bettter. The nurses and doctors that took care of me were all very nice, so all in all, it wasn't a terrible experience.

I'm just glad to be back at home now and recovering. The only sucky thing was that because I was hospitalized, my oncologist (who by the way, was one of the doctors that visited me in the hospital. Apparenntly, he also does hospital rounds and this explains why he's never there during my chemo days!) recommended that I postpone my last chemo session to the following week just so that I could heal a bit more. It wasn't the best news but what he recommended made sense to me. It's just a small hiccup in the road but I really can see the end of my journey nearing. One more session to go! I've got my calendar penned in for December 11 and I'll update my blog thereafter.

My hospital bed and room which I called home for 3 days

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!