"Personal battles are won

in the heart of the person"

 Latest News for the Month of

April 2006

Your not going to believe this but I sold the Bus and am done traveling...........April Fools............??? ( Gotcha )

Here we go. Another birthday and another year filled with great experiences, travel opportunities and many memorable moments. For those wondering I am approaching the Big 50 way to fast. I am 48 now so two more years will mark half a century for me. Geeeezzz that makes you sound old when you talk about centuries and decades. :) We are meeting up with Kim and her family for dinner this Saturday to celebrate my birthday as well as Mum's and Kim's mom. We always enjoy getting together with them as they are members of our extended family and since Kim's Mom and I share B-Days close to each other we always celebrate them together. Ya just can't find better people then the Royals and I always look forward to seeing Ma & Pa Royal and the rest of the family.

We are nearly home now and are parked in a nice resort in Gatlinburg. We decided to rest a few days before heading home and opening the door to the house. There is so much to unload after being gone for nearly 4 months along with a few things to do at the house. Thankfully I am blessed with some amazing friends and one of my trusted is ( affectionately named ) Goose ( Paul McAvoy ). Goose has already got the water turned on, the lines flushed and the hot water heater turned back on. He also looked after our house for us the entire time we were gone, collected our mail, boxed it up and sent it to us wherever we were located, month after month. I simply cannot thank him enough for all he does for us. I also consider myself extremely fortunate to have such a loyal, trusting and  honest friend as Goose. Being a former Marine like myself, we just seem to have that " Bond " for life. He is just one in a million. Thanks brother Goose for always being there. Semper Fi Devil Dog.......

My updates will be a little slow as we go back to the bloody dial up internet connection. Good Gawd you never realize just how fast DSL or WIFI is until you go to dial-up. It drives me insane trying to post pictures, updates and such. So bare with me as I try and keep you all posted on my whereabouts and the latest hap's in my life.

Speaking of Hap's, Ingrid and her Mum will be leaving for Europe on the 20th and after I get a few medical things taken care of and get some rest I too will be heading over to meet up with them in the Netherlands. I am really looking forward to this trip and meeting her Dutch family for the first time. Ingrid is really excited as she hasn't seen her family in Holland in over 20 years. We will be there for 2 weeks then come back home, rest, get a few things taken care of around the house then head off to start our summer trip of the East Coast. I will keep you posted as to where we are headed and when.

On the health front, I cannot wait to get back and get some rest. This last week of travel has been tough one me. It's been non-stop it seems and it takes its toll on you sooner or later. I have a Doctors appointment with Dr. Brockmyre and will be getting a check up then. I will also be heading off to the Lab this week to get some much needed lab tests done. I don't have a clue as to how my liver is doing, where my Hematocrit is at or my other blood lines. It's going to be great though to see all my " girlfriends " at the lab and Doctors office. While I have called them, they haven't had the pleasure of my harassment in person in quite a while. Catch up time.

In the meantime, be sure to check the pictures I have posted on our trip home and the Grand Canyon. You can get there by clicking here. I hope this finds all of you doing well and ready for spring. I am sure it has been a LONG COLD winter for many of you ( I wouldn't know as the heat in AZ and CA was great ). :)

Hi Gang:

We are currently parked at Lindy & Kim's and enjoying a wonderful Easter weekend. Lindy took me and Ally, along with Ally's Mum to our property to get another look at it and found several of the vacant properties have been built on. Quite surprising as all this happened over the winter. Everyone in this gated community has 5 acres of forested land and the drive through the Blue Ridge Parkway, seeing the sites and looking at the waterfall made us realize why we bought this property in the first place. It's just a gorgeous area. We don't plan on building on it till we are done traveling.

Alot is happening medically so I will update all of you on the latest.  I had my appointment with Dr. Brockmyre for a re-check and consultation and it was great seeing him. He was pretty interested in hearing about our travels and such. Also I wanted to send out congrats to him and his wife. They are expecting their 8th child soon. Yes, that's right I didn't mis- type that number - eight. They were just born to parent and are great with their kids.

My labs looked great in some areas and poor in others. My liver enzymes came way down and are back in the normal range again. My CBC showed normal red and white cell counts but my platelets are to high and causing some serious headaches, vision problems, etc. Its always a worry when they go high as it puts me at a high risk for clotting and strokes. I am just staying on top of my INR ( Blood clotting factor ) with weekly blood tests and I am hoping for the best. Little else can be done.

Some of you may know I have had numerous strokes which has led to a loss of some of my cognitive abilities. Memory, simple math, etc. Over the last 6 months I have lost a great deal of my ability to properly use word's, structure sentences, spell, punctuate, etc. It is now to the point I cannot remember any word rules for punctuation or word usage in sentences. Dr. Brock and I and Ally all discussed this and he has scheduled an MRI of the brain for me to see what's going on. We don't know if its ongoing silent strokes I am having or the possibility of a degenerative brain disease. Hopefully the MRI will give us a clue as to whats happening. I can tell you this much. Its getting extremely frustrating to type e-mails, post updates, and other things and I am sure many of you have seen all the mistakes I make here. :) I have had more then once wanted to throw this computer out into the street as it can be a major source of frustration. One only has to experience these things to really understand how rough it is. I take no enjoyment in asking Ally to add a few numbers for me or do a simple math problem for me. I also do not enjoy in the least asking her how to use a word and reading a sentence to her to see if I am saying things correctly. I do the very best I can and try to remind myself I am extremely lucky these strokes havent caused major paralysis in my arms or legs. There is always a silver lining in every dark cloud. But I admit sometimes I have to work very hard to remind myself of that at times.

Sitting at the dinner table last night with Lindy, Kim, Ella, Natalia, Matt, Ally and her mum reminded me just how great family is. I always feel content when I have my family close to me. Whats even greater this weekend is being able to see Ella for the first time in 4 months. Good Bosh has she grown in such a short time and is jabbering even more. When I talked to her on the phone the other day she chocked me up by saying " Bumpa, I love you ". It took everything in me to keep from breaking down and crying. Those are four of the most special words a grandparent can hear.

I also wanted to update you on other matter. Its to early to be singing happy songs but I have applied to enter a new clinical trial on a new chemo drug called Pegasys. This trial is taking place in Houston, Texas at the MD Anderson Leukemia Center. It is one of the largest leukemia centers in the world and this trial is very important to patients such as myself. It will help develop treatment drugs for the future, especially Pegasys. For those wondering, Pegasys is also a synthetic chemo type drug and really is an Alpha 2 A Interferon ( the same drug I am currently taking ). The difference is that the new formulation they are using in these trials is time released as well as formulated differently. It has been found to cause much less side effects as well. I will be contacting their center on Monday to enroll and if the insurance companies approve it then I will be traveling there at the end of May for a series of tests, including another dreaded bone marrow biopsy. One thing they are looking at is to see if I am currently in the Polycythemia Vera stage or if I am still in the Myeloid Metaplasia stage. If I am in the MM stage then I wont be able to enter the trial and program. Let's all pray that I am back into the PV stage and the amounts if Interferon I had over the winter converted me. If accepted I have promised the Doctor I will live up to my end of the bargain which is to return to Houston every 3 months for rechecks. During the other times, Dr. Brockmyre will oversee all of my lab work and work with the Doctor/team of the clinical trial to ensure smooth transfers of information and treatment. One last thing, the Pegasys is not a drug that will cure my disease. There is only one thing that will do that and that's a transplant. But the Pegasys will allow me to inject once a week with little side effects or otherwise getting sick as well as hold the disease at bay and preventing me from getting worse. It also should control my blood cell counts much better as well. I am trying not to get excited yet, but its hard. I will keep you all posted as to the latest developments.

I hope this Easter holiday has found you filled with happiness, and love and that you enjoyed the holidays with friends and family. Happy Easter everyone.

Be good, enjoy and be safe. More Later,

Chris

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