Wednesday, August 18, 2010

My Journey 8/18/10

   Sorry for the delay everyone, Things have been a little hectic after I finished up my second round of ICE chemo.  A lot of good things are happening and moving forward.
The best thing that has happened in the last couple weeks is I am engaged!  Erika has been such an important person in dealing with my Hodgkin's that I dont want anyone else to take her from me. Hahahah, So I put a ring on her finger.

   So while I was in Lutheran Medical, August 5th was a really fun night with Michael and Jessica Bunchman doing their live cabaret " The truth About Love and the Usual Lies".  even though I was not able to be there in person, I was able to watch the event through Skype and say hey to everyone before the show started.  Technology is so awesome!  Thats how I v-chat with my brother in Brazil.  I had about a week of chemo hangover.  Its like your in a fog and everything happens really slow.  But got out side the following Thursday and played a round of golf with Frank Wells, Neil Burton, and friend Jake.  I lost a couple bucks so I bought the boys lunch.  What do you expect when you haven't swung a club for a month or so.  Shot a 102 from the tips.  Thats not so bad considering...  The rest of the time I have been filling out application forms for assistance.  Its amazing just how much paperwork there is for all of this!  There has to be a simpler way!  I understand there has to be some due diligence on my part, but come on, this shit is getting monotonous.  Hmmmm...  So with any luck ill have some help with my insurance premium.  One other thing, I go to Denver on August 27th to start my Restaging.  Its a battery of tests that include another PET scan, Echocardiogram, Pulmonary tests, x-rays, CT scan of my sinuses, labs, EKG, and a bone marrow biopsy.  I get this shit done in one day!  I dont have time to fuck around!  Hahahahah.  The CV or Hickman Catheter will be placed the next week and shortly after that, we start harvesting my own Stem-cells.  Pretty crazy but pretty cool too.  Ill be updating through that hole process as I have about a month of hospital time and a month of out-patient care in isolation.  I'll also have my i-cam to v-chat with friends and family through out.      

   The other thing that I have been working on is a Non Profit to help people that are newly diagnosed with Lymphoma and Leukemia about what to expect through there treatment.  The only person I really talked to was Marty from Marty's Kids here in Breckenridge. And all he said was there are going to be times that you aren't going to want to get out of bed.  But you have to give your self a pep talk and make your self get out of bed and get outside.  And he was right!  But I want to take it a couple steps further... I want to physically talk to young adults and motivate them into a mindset that this experience is a small bump in the road, but to fight it like you have nothing to loose!  Getting involved with Oncologists and Cancer Treatment Centers, and also paying visits to Oncology departments at hospitals.  Using my connections in the Action Sports industry to raise money to help take care of those new patients.  Using them also will help put together a network of survivors that can help spread the vision and mentality.  I'm thinking about doing two things with the proceeds,  Some sort of financial assistance to help with insurance premiums, or by donating money to The Leukemia & Lymphomia Society and/or Lance Armstrong's LiveStrong foundation.  There is a lot of worthy causes to help, and a bunch of really good projects to accomplish doing it.

   So its called Guerra Project.  I'm Currently working on getting all the legal paperwork put together and filed correctly. And a website sorted to start with information and goals! Give me a couple days and ill have a website up and running....  If you have any questions, let me know.  Im still putting together the mission statement and business plan.  Thats what's been keeping me occupied and not updating.  For those of you who dont know what Guerra means, it's translation is WAR in Spanish and Portuguese.  And Guerra Project has become my war on cancer.  Its really just a state of mind.  But its not just a mind set to beating cancer, but a way to approach life's challenges in general.  Thats where im at! Hang tight as there will be more info on Guerra Project shortly....                    
  

Thursday, August 5, 2010

My journey 8/6/10

8/2/10

A little glimmer of good news today. My blood counts are up and looking really good.  I thought that after a three day infusion that they would be much lower.  So that is good.  Also I have been feeling good and ready to get on with this process.  I go into tomorrow to have the second round of intense chemo.  That will be a three day infusion of ICE.  One other thing, im going to Lutheran hospital instead of St Anthonys.  I guess one hospital has the Chemo in stock and the other doesn't.  Change is good.  Its off of 38th and Kipling for those who want to know...

8/6/10

I've been getting asked about the time line for the stemcell transplant.  There is a lot of stuff to it.  But here it is in a nut shell.

3 weeks from now I go through a shit load of testing.  Blood, Heart, Lungs, Bone Marrow biopsy, you name it.  Just to see where I stand physically.  I should be good to go after this current round of chemo by that point. 1 week after that I will have the catheter put in (a Hickman or Girshon) into my chest, at the point I will have my stem-cells harvested. Once we have enough Stem-cells, 2-3 days, I go through a week of chemo to hopefully kill the last of the bad Hodgkin's cells, then a week or so of recovery and then the transplant.  Im potentially going to be in the hospital for 3 weeks.  Then outpatient isolation for 1-2 months.  Maybe longer depending on how my body feels and how recovery goes.

The PICC line in my arm is coming out tomorrow after all the chemo and meds are done.  Looking forward to that.  That thing has been a pain in the ass.  But very convenient as well.

Defiantly starting to feel the effects of the chemo.  Tired and fatigued.  Been getting rest.  Looking froward to getting home and feeling comfortable.  I gotten quite a few things done while i've been here.  Ill fill you all in about that down there road...