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 ;)