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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Tuesday, January 13, 2009

WHOA NOW

Whoa now, let’s not get all excited with my dad’s perspective. He’s really jumping the red sox conclusion. I have not, yet, joined Red Sox Nation. I think there is a disconnect between what he said and what is reality.
I am in remission, a tentative remission. My labs are all great. My CT was clean. There were several “spots” in the abdomen. But the CT was clean. We’ll check the spots in the abdomen in 3 months. That’s what Alyea told me.
This is how it went down in my perspective.
I told him that explanation was not going to go over well. I asked him if I was in remission.
He looked me in the eye, and said, “Yes, you’re in remission.”
Now, we can back off on some medications and he pinpointed my prograf, which we’ve lowered to 1 mg.
He did not suggest I lay off my narcotics, which confuses me. If I am in remission, wouldn’t there be no need for the continued pain control.
I have been experiencing some abdominal pain.
Though I am in remission, I think I would like to continue exploring more about healing myself and protecting my son.
I’m calling this a tentative remission. We’ll see what happens in three months.
I’ve made a schedule for X and I about what we will do each week. The plan is to have X go to his grandparents on Mondays to play with Lexi and Carter while Jon is at school. On Tues., we’ll hang out with Jen & Jer’s with Colin and Ethan and have dinner, Weds. My mom takes him to Lebanon for his therapy appointment. Thursdays we’ll hang out at the house. Fridays Lexi comes to spend the night and we do something special (like game night or movies). Saturday X has basketball from 10-11 with Dad and I hang out with Lex in the morning, then we switch kids from 11-12 so Lex can get to b-ball by 12. X and I will go to Alissa and Logan’s house to play. J will take Lexi for the afternoon. Sunday morning, Danielle and her kids will come here. This is the plan so far.
I’ve ceated this to form some structure in X’s life so he can feel safe that he will be continuously taken care of. The biggest fear he has, that he admits to, is that nobody will take care of him. He’s always asking me “Who is going to take care of me?”
This breaks my heart. I want to work on his feelings of safety by providing a schedule full of providers who love him. Hopefully, this is a schedule that could be maintained even without me.
As far as me, I’m considering going forward with some untraditional healing ideas through the guidance of several doctors I know and one in Germany who I have been recommended to. I have a three month period of remission! YAY! I’m going to take this time to prepare for “just-in-case.” And I am not, yet, ready to join Red Sox Nation.

8 comments:

Anonymous said...

Hillary, I have been a big supporter up until this point. Are you sure that you are being true to the tenants of your deal to become a Red Sox fan (-: LOL

Since you've declared this tentative remission...maybe you could be a fair weather fan. There are plenty of those!

Thanks for sharing the great news. Melinda in Keene

Anonymous said...

Lets hope one remission leads to another. It must be hard to let go of the construct of being "ready for anything" when you hear good news. I actually think you could go from Blogger to talk-show host!! Great news... Deb Weatherby

brynn said...

ooo talk show host...now that could be fun!

Anonymous said...

Remission... Congratulations! Although it may sound to you a bit too good to be true, enjoy it! Tentative or not it is ever so much better than the alternative... and I see that you're already looking ahead again... Go girl! Dianne

Anonymous said...

Hillary, that's fantastic news. Even though you are somewhat tentative about it just now, it certainly beats the alternative. Your plan for yourself and Xander sounds well thought out and seems to cover all of the bases. Good luck with it all, and can't wait to keep hearing updates.
Eileen

Anonymous said...

That's fantastic news, Hillary! Now as for the Red Sox switch, today is the best day ever to do so, with Jim Rice being inducted into the Hall of Fame today!! (he was one of my Nana's favorites!) Keep up the excellent work, we're all SO proud of and excited for you and all your loved ones!! Love,
Heidi (Zutter cousin!), John, Maizie, Brian, and Jason

Anonymous said...

You go girl!! There are a lot of us that are pleased with this news ... Red Sox or no ... I'm proud of you for showing the class you have in spite of facing some huge challenges.

Take care ... tell X that the Frogs await his visit!! And so do I.

Best wishes,
F

Anonymous said...

Hillary, that is wonderful news. I am so happy for you.

See, I thought 2009 was going to be a great year for you! You guys will be coming for St. Paddy's Day before you know it.

Keep on smiling!

Carol