Tuesday, August 19, 2008

Gnu Gnews

My husband is doing a better job of relaying information through his blog posts. He relays information quicker and in a clearer fashion because he actually listens during these meetings with the White Coat folks. My mind is constantly running ahead to the What's Next and What Does This Mean. It's not that I am not listening, but I tend to remember less of the details after all is said and done.

What the Mister didn't get after leaving the meeting is that the clinical trial would be a continuous cycle of treatment of ten days in hospital followed by a rest week and then another ten days of hospitalization. This pattern would continue until the clinical trial folks were satisfied with my overall health. Not to mention that the course of treatment and follow up is more intensive because it is research-based. I'd be poked and prodded at a greater rate than my previous experiences. These medicines are relatively new and untested, so who knows what effects they will have on my body overall.

The study nurse also warned me that as of yet in the course of the study (3 years) no patient has gone into remission. They were however able to get several patients ready for bone marrow transplant which is the direction I am moving.

After the meeting, I had a bit to chew on mentally. Automatically, I prayed for wisdom and guidance. Last thing this girlie wanted to do is eff up her treatment with a wrong decision.

I've decided to stick with a familiar chemo routine, putting the clinical trial on the back burner as a potential treatment down the road should I need it. There are several practical considerations involved in my decision, namely we simply don't have the resources available right now to handle Little A's care during the time needed to be involved in the clinical trial. They'd want me to start the trial in a week which doesn't give us a whole lot of room to coordinate proper child care. Sure we could slap together a rotating schedule of folks to watch Little A, but I'd prefer not to push him into a whirlwind that would only upset his little heart after so many good weeks. Plus, for all the work involved in participating in a trial, there's no assurance that it will push me into a full remission.

I'd love to participate in a trial that eventually might assist in future successes of cancer patients. But the time isn't right for me nor my family. Friday, I'll be meeting with my oncologist to chat about what is next for me.

Today I got an interesting phone call from the bone marrow folks. They want to move the train along and get me in for a series of pre-tests to determine my overall health and eligibility for transfer. The coordinator told me there were two donor situations that I and my doctors will need to consider: a near match from an adult donor or cord blood. I can only assume that the transplant is nigh. Sooner than later, I hope.

I don't know what this means for my schedule of treatment, but perhaps my choice to forgo the clinical trials might work out for the best.

On a more random note, the other night at the grocery store, Adrian and I saw a lady gliding down the aisle using her head scarf (Please someone tell me what the technical name of the Muslim headscarf is; I know it has one.) as a hands free tool for her cell phone. I kid you not, she had that hot pink Razr crammed into her scarf just chatting away. It was surreal.

Today as I left the post office, I noticed a vehicle with a round sticker on its gas cap cover that read "Gas Prices Suck". Yeah well, doofus, if you didn't drive a Yukon then maybe the price of gas wouldn't suck so bad. Doofus.


Girl With Curious Hair said...

Random answer first: most Muslims refer to the scarf as 'hijab' although some just call it a scarf. And I've seen a number of Muslim women use their hijabs as hands free devices now that you're not allowed to drive while holding a cell phone.

You're in my thoughts.

ev said...

Melissa and Jeff have both seen women use their cleavage has phone holders (when not in use) recently. Now that I have huge knockers (thanks to pregnancy), maybe I'll get that method a try. You're bound to never miss a call!

I'll be calling you later today!

Anonymous said...

The pictures from King's Dominion are so cute. The joys of summer.


Anonymous said...

Re the gas price sticker - around here (Texas) they are doing the end of the year close outs on vehicles and pushing the Hummer 3 as having the best gas mileage "in its class", which is then revelaved to be (in a quieter voice) a whopping 18 miles per gallon.

Anonymous said...

I think that same lady came to my door at work a few days ago.
She also was wearing her headscarf which held her pink phone to her ear.

It really cracked me up.
I don't know where you live but it must be the same woman!

Debbie said...

Trust your decision to wait on the clinical trial. If I'm not mistaken and tv and movies are correct, clinical trials have side effects like gigantic alien mayflies which grow inside of you and pyrokinesis...although pyrokinesis might come in handy on those camping trips.

Wishing you well!

JamieSmitten said...

Well you might as well just slop on a feedbag and not be distracted by little things like forks, right? Big sigh. I'm glad you have treatment options -- always good to have some control over the direction. Keep on keeping on.

Jen Ballantyne said...

I wish you well with your decision Manda, here's hoping the transplant is sooner rather than later. Sounds promising. You make me laugh with the guy in the Yukon, you tell him girl!!! Stay strong sweetheart, hugs Jen B xxx

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