Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Monday, June 29, 2009

Promising News

There still are more experiences awaiting us down here.
Last night, c and c took us to the bass pro shop where there were all sorts of activities of xander (and the sports enthusiast in all of us).
Upon walking in and seeing all those confederate flags hanging, x again decided that they were his "x" flag and screamed "yay! It's my flag!" And pointed.
I haven't given him the whole history lesson mostly since I am not sure how to approuch it.
For most my life I didn't realize that history is told differently between the north and the south. I was amazed when I found out, for sure with evidence, that this was true. I don't really know the southern side of things.
I am also still a little suspicious that two stories could exist. I'll have to investigate.
I do know we had lots of fun at the bass pro shop. There was a casting area where x could work in his skills and try to hit the "large mouth trout" which were really pictures of fish with buckets as mouths.

Then there was a free laser shooting gallery, but the guns were too heavy for x.
He wasn't really feeling the keychain I desperately wanted him to sit down and make. I guess it didn't take enough boy energy.
Having x is a really good excuse to do fun things that would otherwise not be so appropriate for a group of adults.
We went to the shakespearean park and montgomery's museum of fine arts, which has a great kid's section.
I think brynn and colleen were having as much fun mother-daughter bonding as x and I did. We did an artwork project with ripped paper and pastels. Brynn's inner artist came out with a landscape showing an itty bitty stick fisherman.
We thought that might be the highlight, but they had mac computers where you could take a webcam picture then decorate it as you pleased.
Colleen and brynn experienced some serious giggles over this one and we soon became the "booger bunch" with colleen as queen.
I did try more localfare in my attempt to "eat my way through the south" at islamoradas where we all tried "alligator nuggets" including xander.
I have to say they weren't my favorite but now I can at least say I ate alligator.
Absolutely worth the experience, and I do think a trip to savannah to see carol should be in the works, maybe for next spring.

There is promising news on the health front, a recent "moss report" written and published by Dr. Ralph moss, an oncologist who was previously employed at america's alpha and omega cancer center, sloan and kettering, but left to start hos own manhattan based practice using the world's finest complementary care methods declared the efficacy of hyperthermic treatments.

Hyperthermia is the possible treatment I will undergo in the fall in Germany.
I am not personnally familiar with dr.moss; however, he did come highly recommended from a professional I highly recommend.
I haven't retained his services since the fee sticker shock of $300 for an online consult was a little too much to swallow. Then when I did get to the point where I decided reviewing his services may be worthwhile, his scheduling secretary said I would have to buy additional information prior to speaking with him for an additional $300.
That just didn't sit well, but I will take what he will give for free (you should too) sign on to his site and receive weekly moss reports.
This is where I learned that a usc study showed I had unwittingly canceled out my velcade treatments by consuming green tea.
The study said three or more glasses of green tea daily would likely cease the mechanism of action in velcade.
That was just about what I was drinking daily during my infusions. How ironic, I didn't trust, didn't want, that velcade anyway, and I undid any good it could have done unknowingly by imbibing a tea that's anti-cancer properties function in the same manner as the drug itself.
Usc had probably hypothesized that drinking green tea with velcade could send levels through the roof and incite side effects by potentiating each other, but no, the opoosite is true.
Tea and velcade cancel (or cancer) each other out.
Good news is, A recent report states that hyperthermic treatments have been used with great success in germany among woman with advanced cervical cancer effecting the lymphnodes.
The addition of hyperthermic treatment doubled the 12 year survival rate (so dare I say cure rates?) Among this study group.
Why is this good news for me? This will probably be my next line of treatment if push comes to shove and I head to germany.
This is the treatment dr ursula jacob, who was also previously farrah fawcettes doctor, recommended after reviewing my extensive history.
Hyperthermic treatments can be localized with minimal effect to surrounding tissue though I am sure blood counts will be altered. I hear this treatment may be available in the us, but in few centers. It is available in germany and has been embraced by the klinik Im alpenpark and among the german orthodox cancer society despite being relatively new technology.
Good news. Good to know I'm headed in the right direction. Now if I can only escape financial catastrophe and emotional break down until I make it there.
One person's reaction to Jon's statement that I may be headed to Germany pending test results to see "The same doctor Farrah Fawcette sees" certainly didn't help our peace of mind.
The person looked at him, quizzically, and told Jon, matter-of-factly, "you know she (Farrah Fawcette, not me) is dying don't you?"
Just in case you needed some tips on manners and ettiquette, social savior-faire dictates that you should NOT respond like this.
I am deeply saddened by her recent death, and more so irritated that "The King of Pop" had to die on the same day and outdo her media coverage. This day also happened to be "Nationally health care day" with rallies and meetings in Washington DC. Those events were also overshadowed by Micheal's death.

On the political side,I have received some very positive communication with employees and representatives of the state of nh regarding my patients as partners idea.
The goal is to have the site framework set so I can log in and be up and running as a trial patient before leaving for germany.
I am cautiously optimistic about this endeavor.
Everytime I receive an email or any communication I wonder if this is really happening, if I am really being taken seriously, and if this vision can and will be implemented.
I'm getting closer to allowing professionals all over to share my vital health information, to weigh in freely on best practices and hopefully expedite communication for ease of access. I am excited, but I am keeping it ion the inside.
I know farrah fawcette, God bless and rest her soul, would have loved this vision.
Her endeavors, I assume, came of the same motivation as mine: to normalize, if not glamorize in hopes of gaining attention, cancer. Ms. Fawcette did far more than make it okay to say "anal" on tv without a snicker. She added transparency to a process many of us will face, a diagnosis of cancer, so we could live vicariously through her, thus preparing ourselves should the worst ever come to our family.
Then she picked it up a notch and turned her jet setter ways into an all out cancer journey, showing the world cancer treatment does exist outside the US, just as effective and for a fraction of the costs.
She has the film to prove it.
I have the studies.
Hopefully soon, the wealth of information my body holds in regards to fighting my lymphoma will be categorized, organized and able to be reviewed by those who want to access the information and collaborate to find a cure.

1 comment:

Anonymous said...

I am so happy that your Southern jaunt is keeping you upbeat and happy. Keep eating those cheese biscuits, and don't forget the cheese grits. A mint julep on the side isn't bad either.
And I am so excited that you are thinking of coming to my neck of the woods. Try to plan for St. Patrick's Day, a big party that we love to share with our friends.
I will start getting my house Hillary ready!! It's funny, because I am planning some renovations, but they should be done by next March! I promise that there will NOT be any cabinets with doors hanging off!