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!