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.
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."