3 Years!!!

Tomorrow, September 16,2013 marks 3 years cancer free! So much has changed over these last 3 years, most of which I never would have imagined possible as I was laying in that hospital bed at the Mayo Clinic going through my 2nd bone marrow transplant in as many years. On January 28,2011 I wrote a very honest post about being scared. About how I feared death and feared the unknown that I was facing at the time. I wish I could say now that I no longer fear the unknown, but I can say that I embrace the unknown as it has only brought me positivity since that time. The doctors at one point gave me a 25-30% chance of living more than 5 years; which to be honest scared me and probably did more harm than good at the time. But as I look back on the past three years now, I am glad that they told me this because it has made me embrace each and every day for what it truly is, a gift. Life is too short to worry about what might happen, we m

Cancer Free!!!!

I feel horrible for not updating my blog for everyone especially after the news that I received last month. After 4 days of testing at the Mayo Clinic Dr. Reeder and his colleagues determined that I was 100% cancer free and being one year out from transplant this was a huge accomplishment. It meant that I could get off of the majority of the meds that I take and I could finally do some things that normal healthy people might take for granted. I have been cleared to travel outside of the US, I can help my dad work on renovating his house and I can eat raw fish again!!!
I have thanked many people in this blog but seemed to have over looked many others. I need to first and foremost thank the wonderful woman that is out there somewhere in the United States that gave me the gift of life again. I do not know you but I hope to one day meet you and thank you for saving my life! What you have done is such a selfless act and I can never, ever thank you enough for what you have done. Without your gift I would be dead and I love and commend you for that!!!
I also need to thank Dr. Liu and his staff especially his nurse Jerlyn, it's been four years and you have always made me feel comfortable and safe even during my most trying times. You are an excellent oncologist and friend, thank you! Dr. Reeder, you brought your knowledge and skills of years of cancer treatment and it is because of you and the othe doctors and Mayo that I am alive and doing so well. One day we will have to get together here in Hawaii so I can buy you some good sushi and some wine! There have been many, many other nurses and assistants that have helped me along the way but the best NP that I have met and feel honored to have met is Mary Peterson. You truly helped to inspire me to not give up when things got hard after this second transplant and honestly were such a help to both me and my mom. Your support made this recent ordeal so much easier, I hope to see you in a few weeks and be able to enjoy a dinner at Alessias and some wine and finally meet your husband. Thank you again for everything that you have ever done!
I am doing great now, work is getting busier and I am hoping to work my way up the ladder at MD and prove to them that now that I am healthy I can do the work to become a solid asset to the Company for many years to come... I also want to thank Dr. Lani Leary my phsychologist for helping me work through the tough transition that I went through after this past transplant. Our talks have really enlightened me and helped me to view life in a much more positive and precious way.

Update, Finally!!!

I apologize for not updating as often as I should. I am back to work full time so I am on a computer all day long at work and the last thing I want to do is go home and turn on my computer. But I want to keep everyone updated on my progress so I know I should be on here more often than I have.
Dr. Liu and Dr. Reeder have both said that I am doing great and I have had pretty much NO side-effects from the transplant! An excellent sign as I come up on my one year anniversary on September 16th. I cannot believe it has been a year already since I was given the gift of life by a complete stranger. I hope to be able to contact them once the year waiting period is up and with any luck they will agree to meet with me as I want to thank them personally for being my angel!!! They saved my life and I will be forever grateful to them....
I will be heading up to Arizona again on October 9th for 3 days of tests and scans and then a meeting with Dr. Reeder for my one year check up. I know that everything is going to go great and the test results are going to be excellent! And if I am lucky he will take me off the last of my daily meds so that I can finally enjoy some raw fish again, it was easy to skip when I was in Arizona but it is absolute torture to see poke at every bbq I go to and not be able to have any. I think I am going to go on a poke eating binge as soon as I am able to eat it again! Watch out Rutger Market cause I am coming to wipe out your inventory :)
I have attached a short clip of the video that Jim took during my transplant. It shows the actual donor cells traveling down the IV into my arm. Amazing how this tiny bag of cells rebuilt my entire system! *** Thank you Jim for taking this video as I was so medicated I don't really remember any of this day or the few that followed.

Great News!!!

Sorry about the lack of updating, I have busy with work and everything else now that I am back in Hawaii. So, I went to Arizona a couple of weeks ago and had my 6 month PET scan and meeting with Dr. Reeder. After an unnerving few minutes of small talk he finally broke the news and told me that the scan showed NO, ZERO, ZILCH signs of cancer!!! I beat this monster once again and for the final time! I am more than relieved to say the least, I feel as if the weight of the world has finally been lifted off of my shoulders. It is now time for me to focus on the future and move on with my life and be happy again. This transplant has been VERY hard on me both emotionally and physically and I still have a ways to go but after everything that I have gone through I know that I can make it through this final hurdle. I could not have done it without all of your support but more importantly I could not have done it without my mom. She has been there for me more than any of you out there reading this can even imagine. And I wish I could repay her for everything that she has done for me but all I can tell her is that I love her and would not be here today had it not been for her!!!

I have even more great news if you can believe it. I was recently nominated and then selected as a 2012 American Cancer Society Hero of Hope. My duties will include speaking at different engagements and telling my story and hopefully inspire others with cancer to speak out about their battles. I will travel to the outer islands for their Relay for Life events but also travel to Dallas, TX this Fall for the annual meeting and conference. It is going to be a lot of work but I am up for the challenge and look forward to spreading hope to others.

Free at last, free at last! Thank God Almighty I am free at last!

First and foremost I would like to thank everyone for their kind comments and emails regarding my last post! It really helped me to get some feelings off of my chest that I have been struggling with for a while. Secondly and just as important, I met with Dr. Reeder last Friday (2/4) and after some cajoling he agreed to release me to come home! With the news, I rushed home and booked my flight on Hawaiian Airlines before he could change his mind! So I will be heading home this Wednesday (2/9). I cannot wait to get back and see my family, friends and coworkers. It will be hard to leave my mom and Jim and the rest of my siblings here in AZ (Kevin, Bryn and Brooke) and their families but I will visit often and keep in touch like I always do.

Which leads me to another topic that I seemed to have failed to cover in this blog although it is something of great importance to me and that is the fantastic job my mom and Jim have done for me as my caregivers throughout this latest battle and all the previous ones. They have both put up with the stresses and worries of my sickness with such grace and dignity and never showed me their worries despite my knowing how worried they really were. It is very hard on cancer caregivers as the patients are always the ones that receive all of the attention when in fact they are going through just as much physical and mental stress as the patient and need the same amount of support to help them make it through. I just hope they know that all of their sacrifices have not gone unnoticed or unappreciated by me and I will be forever grateful to them! I love you both very much for everything that you have done and continue to do!I cannot list everyone that has helped me throughout this whole ordeal, but I cannot forget the support that I have gotten from my Dad and Nani Janet as well. While they may have not been up here to witness the Mayo side of treatments, they have both been there for me every step of the way back home at Straub. And have gone through the same stresses and worries as everyone else. I still cry when I think of the day that I was first diagnosed and Dr. Liu walked into the room and my dad broke down and asked why it couldn't have been him getting sick instead for me. I love you both as well and cannot wait to see you both in a few days!!

With this being said, I would like to also ask that whenever you talk to my mom or my dad or Jim or ANY of my other family members and ask them how I am doing, please also take the time to ask them how THEY are doing. Because we are all going through this together. Cancer doesn't just affect the patient it affects everyone in their lives!!!

*** If I did not mention you in this blog specifically please do not feel left out, I would end up with a novel if I had to list everyone that has been there for me throughout the last three years. Just know that you and your love and prayers are appreciated and do not go forgotten.

*** I'd also like to ask those of you who read this blog and pray for me to please say a prayer for a few of my friends that are also battling their own forms of cancer, Wyman Ly, Steve Hext and Rhone Rarick. We can all beat this thing if we stick together and fight like we never fought before, so hang in there guys and keep swinging!

Being Scared

I'm not quite sure why I am writing this blog entry tonight, possibly because it is 2:15 am and I have been trying unsuccessfully for the past few hours to sleep or maybe I just needed to get things off of my chest... Throughout this journey of fighting cancer I have remained upbeat and positive with everyone around me because in a way it made me feel better about things but also I think I just didn't want people to see how scared I truly am. I felt like I had to put up a front and brush things off as just being minor even though they were not and I was freaking out inside. Maybe it was an ancient survival instinct kicking in, blocking out the fear so that I could go on with things. Or maybe it's because it's not the macho thing to come out and admit that I am scared but there comes a time in your life when I think that everyone must admit it at some point. I'm sure that even a guy like Laird Hamilton who catches huge unthinkable waves for fun has been scared before in his life. I'm sure some of the top professional fighters have been scared at least once during a bout. There have to be Navy Seals out there that were scared when they were faced with live combat and all that training and bullets were suddenly real. Now whether they have admitted it, I don't know. But I think that it takes a real man to come out and admit they are scared. And I am scared...

For me the physical part of the cancer treatment has actually not been the hard part as most people would think. The mass amounts of low dose and high dose chemotherapy, the radiation to my chest area to the point that I have already met the max amount of radiation that a person should get, the two bone marrow transplants, those are all things that I am able to deal with. Sure it was hard and I felt horrible but I knew that after a few weeks the sickness would go away and I'd be feeling better again. Even the long lasting side effects like the neuropathy in my feet and left hand or the shoulder pain caused by the excessive radiation to the nerves in my brachial plexus, I can live with those. No, for me the hardest part has been the mental aspect of the entire fight. The not knowing what the next scan is going to show, will the cancer be gone, will it have spread, if the treatment doesn't work do I still have other options. It is these things that scare me and keep me up at night. And now following this last transplant there is a whole new demon to be afraid of GVHD. Will I develop chronic GVHD? How badly if I do develop it? Is it going to affect my lungs and kidneys or will it be more minor and just be an annoying skin rash? I know that I shouldn't worry about these things until they actually happen (hopefully they will not), but they always seem to creep into my mind on nights like tonight and keep me from getting the rest that I need.

Honestly, what scares me the most is the one thing that cancers patients tend to never want to talk about, the elephant in the room so to speak, and that is death. I still have so much to do and so many places to see and people to meet and I am scared that I will never get a chance to do them. But what scares me even more is the suffering that my family and friends are going to go through. They have already been through so much with me going through this battle and the last thing that I want to do is hurt them even more! And sure they will eventually be able to move on but I'm sure a piece of them will never be the same. And I know it is not my fault, it is the cancer that is to blame, but I can't help but feel guilty sometimes for the sorrow that they have already had to deal with and I don't want to put them through anymore. I have spent many nights crying myself to sleep thinking and worrying about this until I just can't worry anymore and I have no more tears to cry.

Dr. Reeder once told me before this 2nd transplant started that I had a choice, do the transplant and have a 25-30% chance of living more than three years or not do it and have a 5% chance of living more than three years. I took the obvious choice, you don't have to spend much time in Vegas to know that you should always play the game with the better odds. But I have been thinking about these numbers a lot recently and what they mean to me. Theoretically, I may not be around to see my 35 birthday, see my nieces and nephews play in their first games or even grow up for that matter. And that really pisses me off! Those percentages have now become my driving force to survive, I come from stubborn scotch blood and we don't give up a fight so easily so I am going to prove ALL of those doctors and their studies wrong! Who are they to tell me what I can and cannot do based on previous statistics, don't group me in with a bunch of other people because I am not like those people. I refuse to lose this battle! I may be scared as I go through it and my opponent may be bigger, stronger, and faster than I am but I have heart and determination and a will to live so that I do not hurt my friends and family. Tough times don't last, tough people do! So it is time for me to toughen up and keep on fighting. "Clear Eyes, Full Heart, CAN'T LOSE"!!!

New Years Update..

Happy 2011 everyone, I'm sorry that it has taken me so long to update my blog!!! A lot has taken place since my last post, and thankfully it's all been good! Right before Christmas I had my follow up bone marrow biopsy and PET/ CT scan. These tests are always very stressful for me and my loved ones as they determine if the treatments have been working and in the past they have not yielded great results. However, this time I received excellent news! The bone marrow biopsy showed no signs of cancer in my marrow and the PET/ CT scan showed that the latest transplant had worked and the donors cells were attacking the cancer at an astounding rate. Both of the masses have significantly decreased in size and the doctors feel that the new cells will continue to fight and soon the caner will be completely eradicated. It is still too early to be considered in remission, however I am on my way and keeping positive that I will be soon!

I was hoping that Dr. Reeder would release me to return to Hawaii at the end of this month, but he wants me to stay a little bit longer while he weans me off of the prednisone steroids that I have been on since the initial diagnosis of the slight graft v. host disease. He wants to make sure that once I am completely off of the prednisone the GVHD does not flare back up. I am now down to 5mg every other day and will completely stop the pills next Tuesday, after that I will meet with him for an assessment sometime during the first week of February. If everything looks good, I will hopefully be released a week or so later. It was pretty tough for me to deal with having to stay up here longer since I was really hoping to be home in January but I didn't come this far to mess around at the end. And I would much rather stay here a little bit longer now than head home and then have to come back.

I have also been dealing with a small blood clot in my upper right chest that was caused by my port. To treat the clot I had been giving myself Lovanox injections twice a day in my stomach and am now taking Coumadin as well. Dr. Reeder had me stop the Lovanox shots, but I will have to be on the Coumadin until the port is removed. Since I am done with my treatments and no longer need the port, I suggested that we just remove it, that way I can stop the Coumadin and not have to worry about the clot. Dr. Reeder agreed and with any luck they will be able to squeeze me into their schedule sometime tomorrow to have it taken out!

I promise that I will stop being lazy and update my blog more regularly... I hope that everyone has a great 2011, let's make it one to remember!

*** I also wanted to thank everyone that has been helping my dad out with remodeling his house so that I can live there when I return to Hawaii. I would list all of your names but you know who you are and I don't want to accidentally leave someone out. Thank you for your help and hard work, I truly appreciate it and I know that my dad does too!!!

Probes, Scans and Tests...

Last week was a busy week for me at the Mayo Clinic. My stomach had been bothering me for a few days so I mentioned it to my nurse practitioner Mary and she and Dr. Reeder decided that I needed to have an endoscope to check on what it was. After the scope it was determined that it was low grade graft vs. host disease (GVHD), on a scale of 1-4 it is only a 1 so it is thankfully really low. We were hoping for just a little GVHD through out this process so this is a good thing as long as it does not progress and become chronic.

I have also been having some difficulty with my breathing even prior to my recent transplant which has been getting worse. Because of this I was sent to do another pulmonary test and CT scan of my lungs. The CT showed no sign of infection, however the pulmonary test did show that my lung function had decreased even more since the recent transplant. I am now taking a two week dose of prednisone oral steroids to help my lungs expand and function a little bit better. I have also been working out on the stationary bike everyday for a half hour to try and expand my lungs and get some cardio back. And this Wednesday I will be meeting with the pulmonary doctors to determine if I need to be put on a steroid inhaler for a short time as well.

I haven't been taking as many photos with my Canon T2i as I had been when I first got my camera, I am still pretty limited as to where I can go so my subject matter is limited as well. In the meantime I am saving up to get an underwater housing from SPL as surf photography is what I am truly passionate about. I emailed the owner Sean and he priced me one at $1650.00 which is a fair deal for the best surf photography housing on the market. I also need to get a Tokina 10-17mm lens to use with the housing which is an additional $550.00 or so online. So, if anyone in Hawaii has some extra work that needs to be done I will hopefully be home in mid to late January and am willing to do any side jobs that I can on the weekends to get this housing. With my lungs and stamina being low I may not be able to yard or housework but if you have anything that isn't too physically strenuous please do not hesitate to let me know!!!

Well I hope that everyone has a wonderful Thanksgiving! I know that I have a lot to be thankful for especially for the donor that was kind enough to give someone that they don't even know another shot at life. I hope that I get to thank you personally one day!

New Blood

Since I am sure some people are wanting to see how I am doing rather than just read about I have decided to post a picture. My hair fell out after the high dose chemotherapy in the hospital but thankfully myeyebrows did not so I look a little less like 'Powder' than I did after the first transplant. And for some strange reason my facial hair has never stopped growing, in fact it seems like it is coming in faster than ever now...
I have been out of the hospitalnow for 3 weeks and things have been progressing very well so far. When I first got out I still had to go into the Mayo outpatient every day for blood work to make sure that my counts were all stable and I didn't need any sort of transfusion. 3 weeks later and I am now scheduled to just 2 days a week because I am doing so well. I have had to have magnesium every time that I go in because the Prograf medication that I am taking causes my levels to drop but other than that all of my counts have been excellent. We did have a little scare last Sunday when I ended up in the ER after starting to feel very disoriented and dizzy but thankfully it was only because I was dehydrated and nothing major, after a bag of fluids I was feeling better and on my way back home.

Last week they ran a blood test to check my chimerisms to see what percentage of blood was still mine and what percent belonged to my donor. This would be the first test to see how well my body was accepting the new cells and if the transplant was working. After 10 days of anxiously waiting for the results Dr. Slack (one of the oncologists that was on rounds yesterday) informed me that my chimerisms were at 100% donor blood, the transplant is working! They had been hoping for at least 80% but 100% is excellent! I have to admit that I wasn't as excited when I first heard the news as I thought I would be. I think the fact the my blood was no longer really mine kind of freaked me out, forsome reason I felt as if I lost a part of me. I know it is crazy but that is how I felt at first. Of course I am very happy with the results and look forward tomore great news when they run the next set of tests in about 3 weeks from now.

Other than my now bi-weekly trips to Mayo for blood work I haven't been up to very much else. Because my body is still recovering from the transplant and my immune system is easily compromised I have been spending all of my time at home in my moms house so that I can be sure to stay away from anyone that may have an infection. So my weekdays are spent watching movies on HBO and my weekends are spent watching football and soon the World Series! It gets pretty boring at times but I need to remember that I haveto be cautious and not take any chances because any type of infection at this point could have major consequences. I have also become frustrated at times with my physical recovery because my mind is telling me that I feel good enough to workout and get my body moving but as soon as I try I get slapped back to reality by my body. What most of us may take for granted as an easy physical activity has become a struggle for me. Even a simple walk around the block has become difficult but I just have to remind myself that it is a slow process and to not give up because every little thing I do will be a step in the right direction for recovery.

Aside from the large doses of television I have also been playing with my latest toy, my Canon T2i DSLR camera. Because I am not able to really leave the house I have been doing a lot of practicing with all of the settings and different features so that when I am finally able to drive myself and get out and take some pictures I will be familiar with all that the camera can do. I look forward to getting some nice desert scenery photos while I am up here! But for now the backyard has been the inspiration for most of my shots.

Out of the Hospital (Finally!!!)

So after 24 days in the hospital I was finally able to leave the hospital and go home last week Friday. The transplant went very well and thankfully the chemotherapy that I was given was much weaker than what I had during the last transplant. All of my blood counts recovered pretty quickly except for the most important ones which are the white blood cells and the absolute neutrophils, these are the baby white cells that are the infection fighters. Since it was taking awhile for them to come up the doctors decided to give me a neupogen shot which helps the cells form faster. A common side effect of neupogen shots is bone pain in the hips as this is where the bone marrow that produces the cells are located. I have had many neupogen shots in the past without too much pain but this time I experienced some of the worst pain that I have ever felt. After being given two oxycodone pills I was still in extreme pain so they gave me an injection of dilaudid. For those of you who don't know what dilaudid is, it's a pain reducer similar to morphine but 5 times stronger and let me tell you it works!!! The next day they tested my blood again and the reason for the extreme pain was because my body went into overdrive and the white cells and absolute neutrophils bursted out with a vengeance. My WBC went from 1.8 to 16.1 and my neutrophils went from 0.5 to 2.5! Thanks to the neupogen I was released the next day. Since being released I am still having to go to the hospital everyday to check my blood levels but it is much nicer to be able to walk in get my tests and leave after a few hours than being stuck there 24 hours a day in a solitary room.

I am starting to feel better and better each day and cannot wait for them to run the tests to see if the donor cells are grafting or not. They will run this test in a few weeks so keep your fingers crossed! An interesting fact that I learned yesterday is that when the cells do graft I will have two sets of DNA within my body. The DNA found in my organs will still be my own but the DNA found in my blood will be that of my donor. And since my donor is a female my blood will show the DNA of a female.

I will try and post updates more often now that I am starting to feel better. Thanks to everyone for their continued support!

And So It Begins Again...

So I have not updated my blog in quite a long time, in part because my health has been better and in part because I don't like coming back to this page and remembering the tough times that I went through. But it was this page and everyones words of encouragement that got me through everything. And unfortunately I am back on here because I am need of that support once again.

Over the last few months I have been undergoing chemotherapy again here in Hawaii (Navelbine and Gemzar). While the drugs are much weaker than any of the others in the past, my body has been having problems recovering from each treatment. My white and red blood counts and my plattlete counts have all been affected to the point that I ended up in the ER twice and have had to have blood and plattlete transfusions. Because of this Dr. Liu decided to stop my treatment early and go ahead and give me a PET/CT scan to see if the drugs have been working on killing the cancer cells. Following the scans I was told that the cancer was almost gone except for one spot remaining on my left 4th rib. After speaking with Dr. Reeder at the Mayo Clinic, Dr. Liu decided to restart the chemotherapy but this time only giving me one drug (Navelbine). I have undergone one treatment of this so far and have another three to go before they go ahead and schedule another PET/CT. Hopefully after this round of treatment the cancer will be gone and I will be considered in remission.

While this is something that I have been working towards it also means that I will have to undergo another bone marrow transplant which I am not looking forward to to say the least. The first transplant was hard enough on my body but to go through another one and this time have to infuse the bone marrow of a stranger will make it all that much harder. The stay in the hospital will be much longer and because of the chance of graft v. host disease (my body rejects the donor marrow) I will be under much closer watch by my doctors to make sure that I do not develop any major side effects in the first three months following the transplant. But what worries me the most are the potential for long term side effects that could include liver and lung disease and skin sensitivity. So while they are possibly curing me of Hodgkins Disease, I may now have another major disease to deal with not to mention the possibility of another type of cancer developing due to all of the chemicals that they have pumped into my body.

So now I have to make the tough decision of undergoing the second bone marrow transplant or taking the chance that the cancer will stay in remission after this last dose of chemotherapy. While I know my doctors believe that the transplant is the best option I am not quite sure how much more of this I can take. I already have a ton of side effects that I deal with daily and then to add on a heap more I am not sure I want to do that. I am hoping that with a complete change in diet and way of life I can maybe keep the cancer at bay without having more chemicals pumped into me. In the end I will have to talk it over with my family and doctors and come to the best conclusion but as I write this I am fearing the transplant and everything that comes along with it. I would rather live out a shortened life and enjoy myself than live a longer one that includes endless limitations and health issues...

Heading Back Home

I had my meeting with Dr. Reeder yesterday to review the results of my latest CT scan and so far the mass has not grown at all. Although we are hoping for it to grow because that means that I can qualify for one of the trial treatments, the fact that it is not growing and/or spreading rapidly is a good sign! Since it still has to grow another .2 cm I am going to be heading home next week and will wait another 6-8 weeks before they run another CT scan.

At this point we are shooting for the bone marrow transplant to take place sometime in mid to late Spring. Because of this, Dr. Reeder does not want me to start either the trial treatment or conventional chemotherapy too early because he doesn't want to push the duration of treatment over such a long time. So with any luck the mass will have grown by January and at that point I can start treatment and get ready to come back to Arizona for the transplant.

Thanks again to everyone for the support and I wish you all a Happy Thanksgiving and Happy Holidays!!!

CT Scan and Bone Marrow Registry

So, I met with Dr. Reeder and he feels that adding me to a clinical trial is the best thing for me. It would involve me taking a pill once a day and thankfully the pill has very little to no side effects at all. He feels the trial is the best thing because it is so non-intrusive as far as side effects go and because if it doesn't work I still have the option to do conventional chemotherapy... The only thing is my mass needs to be at least 2 cm to do the clinical trial and it's only 1.8 cm right now, so it has to grow before I qualify for the trial. The bigger mass that was there unfortunately was just removed during the biopsy which is why we need this one to grow. Weird I know but that's a qualification of the trial.

So at this point, I will be up here for at least more weeks waiting to do the new CT scan to see if the mass has grown .2 cm. If it is still too small, then I will go home and do another scan every month until it is 2 cm or more. Once it hits 2 cm, they will get me enrolled in the trial and I would start it here and then go home to Hawaii. I would fly back here about once a month for a few days at a time during the first cycle of the trial (2-3 months) to get tested and see the doctors that are running the trail. Once I have completed the first cycle I should be able to remain at home for the remainder of the trial. If my body responds to the trial and/ or chemotherapy I will then be scheduled for an allogenic transplant (meaning they would take someone else's bone marrow this time instead of my own like they did the first time) and with any luck it will take and I will be back in remission for good!

If anyone one is interested in joining the Bone Marrow Donor Registry you can follow this link, http://www.marrow.org/JOIN/Join_in_Person/US_Donor_Centers/dc_list_by_state.pl. and register in your area. It takes only a few minutes and involves completing a registration form and a simple swab of the cheek, that's it! If you aren't a match for me, maybe you will be a match for someone else and you can help save their life... I do know that there will be a Hawaii drive next Wednesday, November 18th, 2009 at the Ward Starbucks from 10:00 a.m. to 6:00 p.m., so go get a cup of coffee and help save someone at the same time. And if you don't like coffee you can always get a $2 taco and a pitcher of beer at Wahoo Taco's next door for their Wahoo Wednesday special ;)

Back In Zona

I am back in Arizona and unfortunately it isn't for golf! I had another biopsy two days ago to determine if the new spots that showed up on my PET scan were cancerous or if they were just left over radiation residue. The biopsy consisted of me being put into the CT machine as my doctor (in a full lead bodysuit, and me in nothing more than a hospital gown) reached his hands into the machine and stuck a hollow needle into my chest while following it's path on the CT screen. He then inserted another needle into the hollow one that was still protruding from my chest and "grabbed" three samples of tissue. While the biopsy did not hurt very much, it was a little disconcerting to look down and see a hollow needle sticking out of my chest. Especially when I was informed that there was a chance of the needle puncturing my lung and/or one of the major blood vessels in the surrounding area. Thankfully my doctor had very steady hands and I am fine. With any luck the samples will come back negative and I will be on my way back to Hawaii! However if it is still cancer I will be given a few options of chemo and will need another bone marrow transplant. This one coming from a donor, not from my own bone marrow. I will have all of the results this Monday and will repost shortly after that...

The good news about being up here is that the University of Washington football team is in town to play against Arizona State so I will be at the stadium tonight rooting on the Huskies, GO DAWGS!

Another Step...

I finally received the latest PET/ CT san results last Tuesday and unfortunately they were not great. The cancer that was treated under my armpit was no longer present (a good thing!), however there are now two small spots showing which were not there in the beginning. One at the bottom of my lung and the other just above my abdomen. So basically this means that I will have to do another round of chemotherapy. My docotor here in Hawaii (Dr. Liu) has sent the results of the scans to my doctor in Arizona (Dr. Reeder) for him to review. Once he's had a chance to review them, they will make a decision on what the best treatment route will be. Until this decision is made I am left in the dark not knowing what type of chemo I will have to endure or whether or not I will have to go back to Arizona for treatment or be able to stay at home in Hawaii to do it.
It seems unfair after all I have gone through to have to go through it all over again and I have to admit that I was pretty angry, sad, depressed, etc... when I found out the news. But all of those negative feelings aren't going to get me anywhere so I have to brush them off and put the gloves back on for another round. I refuse to let this thing beat me and make me another statistic and if I have to go through chemo and all of it's crappy side effects again, than that is what I will do!!! Thanks to everyone for their continued support!

*** On a happier note, I was able to attend Aunty Kathleen Franklin's surprise birthday party last month at the Outrigger Canoe Club. It was great to see her after all of these years, she was and still is like a second mom to me...

Radiation Round Two Completed!

So I finished my full month of radiation on July 15th without any major complications. Halfway through the treatment Dr. Pang decided to expand the treatment area to include my chest and neck area as well. This was done as a precaution to keep the cancer from spreading to other areas that have already been affected. Prior to the expanded treatment the only side effect that I was suffering from was exhaustion which continues to be a problem but should subside over time. However after the treatment was expanded two more minor side effects occured. The first being a minor sore throat which was caused by the radiation hitting my esophagus, the other being a dry cough from the treatment to my chest and lung area. While the sore throat was minor and went away within a few days the dry cough has been persistent and is starting to get annoying. I have been up coughing in the middle of the night for 1-2 hours straight for the last few nights which has been making my exhaustion/ fatigue even greater. I am hoping that Dr. Pang can suggest a good cough medicine that will get rid of the ever present "tickle" in my throat so that I can start getting some better sleep!

I will be meeting with Dr. Liu on July 27th and at this time will find out what the next step of treatment will be. My "educated" guess is that he will have me wait another two weeks before running a PET scan at which time we will be able to see if the radiation was succesfull. I will update my blog at this time with any new reports!

- The picture above is Matt and Ryan Blangiardi and myself. I grew up two houses away from them in Kahala and we terrorized the neighborhood throughout our adolecent years. So much so that another neighbor dubbed us the "Makaiwa Monsters." It was great to get together with them for a few hours before Matt had to fly back to LA. We will have to meet up more often!

- I wanted to use this space to also send my continued sympathy to one of my best friends Vail and his family. Vails mom, Aunty Sandy, passed away after her own battle with health issues. She always greeted us boys with a smile whenever we got together at their house whether it be for New Years Eve celebrations or just random Friday nights. You will be missed by us all!

It's been awhile!

So it has been a while since I updated this blog. Life back home in Hawaii has been great! I am enjoying being back in the sunshine with my family and friends. The waves on the South Shore are finally starting to pick up so after work surf sessions are becoming more regular!
So why I am back on here??? To be quite honest I never really intended to update this thing ever again, it was more of a tool for me to vent my frustrations and feelings while I went through treatment rather than a blog of my life. Which leads me to some unfortunate news. In May I went up to Arizona for a routine check up and scan, while there they discovered that one of my lymph nodes under my left armpit was swollen so a biopsy was done. Unfortunately the biopsy came back as reccurrent Hodgkins Disease. After talking it over with Dr. Reeder in Arizona it was determined that radation treatment could be done here in Hawaii as it was basic enough that the Mayo Clinic didn't feel I needed to have it done there.
So, last week I went in for my initial meeting with Dr. Pang (my radialogist here in Hawaii) and they ran some scans on me so that they could calibrate the exact area that they were going to treat. Apparently those scans are now showing a significant size increase in the lymph nodes since my sans in Arizona last month. The lympnode has gone from one 2 millimeter node to four nodes that are totaling almost 5 millimeters. What this means is that the cancer is getting bigger but thankfully it is still localized to under the left armpit. They also discovered that they have already radiated the area that I am having treated so they may have to cut the radiation short and begin chemotherapy at some point. The reason for this is because too much radiation to one area can cause nerve damage which could lead to paralysis. At this point I am going to just continue with the treatment schedule as is but there could be changes in the schedule once they review all the scans and look at progress of the current treatment cycle.

Thanks for the continued support and don't worry I will be fine!

(The picture above is of my friends Michelle and Leimomi punching me out just like I am going to do to this cancer!!!)

I'm Back!!!

So I apologize for not updating my blog for the past few weeks. I have been getting yelled at by family and friends to update so here I am! I was released by Dr. Reeder to return to Hawaii and arrived here last week Thursday. It is great to be back and to be able to get my life back on track. The first few days were spent getting situated in the cottage that I am renting on Diamond Head Rd. right near Kapiolani Park. The cottage is a little small, but it is perfect for a single guy and the location could not get any better. I have the park a block away, Kaimana beach is a 5 min walk away, and Tonggs and Ricebowls surf breaks are just across the street! 

It has also been great to get back and see my family, friends, and coworkers. The first two days back at work have been awesome but a little tiring. My body still needs to get used to an 8 hour work day after everything that it has gone through, but it will come back!

Thanksgiving

I hope that everyone enjoyed their Thanksgiving. We had about 30 people here at my mom and Jim's house for dinner. It was great to spend time with family and friends and after the good news that I got a few days earlier I had a lot to be thankful for!

 

I met with Dr. Reeder and Dr. Schild last week and went over my progress and the upcoming radiation treatment. I am waiting this week to here back from Dr. Schild's office and get my schedule but I am assuming that I will start within the next week. I should be going everyday for 10-12 days and then will be done with all of my treatment!!! After that it will be about a week of recuperation and then I should be able to make it back to HI sometime after the 5th of January. I cannot wait to get back and see everyone and get back to a normal schedule.

I also want to say thanks to Maui Divers for the giant card! I couldn't get the picture to post but will try again later and hopefully it will work then...

WE Did It!

Yesterday was the big day of my PET scan that would determine whether or not my cancer was still present. After a sleepless night and a day of jitters waiting for the results, I finally heard from Dr. Reeder at about 2:30 pm this afternoon. And it was great news, the cancer is no longer present! After nearly a year, three different chemotherapy treatments and a bone marrow transplant this thing is finally out of my system!!! I still have a few years before they consider me completely in remission and I will now have to undergo about two weeks of low dose radiation but this was the first big step! 

Thank you very much again to everyone that has been supportive throughout my entire journey, I couldn't have done it without you guys!