Jon and X are still here with me. Xan the man is getting a little anxious. I think this is the longest time we’ve ever had him in a confined space. He did go to Chuck-E-Cheese yesterday with Heather and Allen. This allowed my transfusion to go smoothly, and Jon and I got some quality alone time.
Xander has needed some extra love and attention this weekend. He was been very ambivalent to my presence on Friday night. To the point he was going to leave and spend the night at my sister’s, when he got out of the driveway, he quickly changed his mind and made Heather turn around to bring him back to his mom.
He decided he was tired and wanted to snuggle with mom. He has had trouble letting me out of his sight, or even out of his clutches, which I love.
Some hemetologists recommend that children stay out of the equation for the 100 days of isolation. This would be emotionally devastating to me. I think the harm outweighs the benefit of isolating me from my child. I would be an emotional wreck. I would be depressed. I will not be doing this.
Studies suggest that a person’s traits are incredibly susceptible to the circumstances surrounding their actions. For instance, I’m generally a responsible, prudent woman, but take away my child and isolate me from touch and I could turn into an extremely depressed, lethargic, isolated woman who no longer communicates with friends or family, or worse, becomes noncompliant with my medications. This is theoretical, but should be taken into consideration when treating patients.
In general, the convictions of your heart and the actual contents of your thoughts are less important in guiding your actions than the immediate context of your behavior.
For example, I received a study drug through July and August that would make me sleep 20 hours a day, walking only to eat and throw up relentlessly. I had four good days in a two week period. These four days came at the end of a cycle when I was soon due to get the next one. So I had ten days of feeling terrible, and four to function as relatively human before starting all over again.
Well, someone had the great idea of trekking me down to Boston to sign consents during my bad period.
I couldn’t stay awake. I couldn’t stop throwing up on the trip down. I don’t even remember getting into a wheelchair at Dana Farber. I certainly don’t remember climbing all over the chairs in the waiting room, trying to sprawl out and get myself comfortable.
So, being out of sorts, I went to see my doctor, who slid in a consent form for another trial drug without explaining the drug to me.
Under normal circumstances, I would’ve been able to verbalize my dismay over having a random drug I knew nothing about thrown in with the rest of my therapies, but in the context of feeling like hell from his first trial recommendation, I was just pissed.
We didn’t discuss mechanism of action, or the stage of the trial, or the possible side effects, or even the rationale for adding this drug to my regime.
I was just pissed, and we probably both left pretty frustrated with each other.
I think my wondering time is over. I have some questions for hot doc down here. I’ll request to see him tomorrow, with my list of questions that need to be answered. I think I’ve been treading here, but now I’d like some significant information regarding what they will be doing with my life over the next couple months.
I’ve been told I need to stick with Dana Farber until I’m a “Once a week girl” then I can be transferred home, but I was reminded that I’m a twice a week girl for 2 months after the transplant. This would not be so bad, but I don’t understand the rationale when I have a perfectly good hospital right next door to where I want to be.
We will be discussing this, among other things, such as engraftment, side effects to expect, timelines, mechanism of actions, blah, blah, blah.
Sometimes a little perspective, is all that's needed.
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."