I saw Dr. Aljitawi on Thursday and he was full of ideas and plans. He ordered a collection of blood tests to more specifically look at what is going on with my liver. I have a CT Scan of my lungs on Monday, a bone marrow biopsy on Friday (before the Vidaza starts again on Memorial Day Monday.) We'll look at all that information and see where we are.
The liver tests are back and show my Ferritin (iron) levels at 2000. Normal is 200 or less. So from now on when I get blood I will also get a chelating agent that extracts Ferritin from the system. This agent or chelator has to go in slowly...so much per hour according to your weight. So it could take as long as 8 hours. The plan is to start it at the clinic and then go home with a pump the way I used to do for Potassium. But the first time I will have to hang around for several hours so we can make sure there are no side effects.
If the CT Scan shows enough improvement I may be able to switch to an oral anti-fungal drug and then visit the clinic every other day. A major lifestyle change!
He said the Vidaza often takes 3-4 rounds to show results and I didn't get details of what those results are. I just assumed it was working to keep the MDS in remission because I feel so good. So 4 rounds of Vidaza will put me at about the first of July and the 1 year anniversary of this odyssey.
But the main thing is that I'm feeling good. Yesterday I did 20 minutes on the treadmill at a faster pace with some inclines thrown in for good measure. I did learn more about operating the treadmill, but not surprisingly, I could not figure out how to play my ipod on the dang thing. No matter how many times I read the instructions. So I trudged along with my headphones and was happy enough. Books on tape. A Dick Francis mystery. Anybody out there read Dick Francis? He's an English bloke, used to be a horse jockey, and writes prodigiously. Mysteries set around horse racing. Well written and totally enjoyable. His son is co-writing with him now so I reckon we'll have jockey mysteries for years to come.
So, feeling good. That means I am keeping busier though I cannot report any "projects accomplished." Mark and Conor both visited this past week, 1 night each. They both went with me to the clinic the next morning, causing a buzz among the nurses. "Is that the one......?"
Nurse practitioner Julie told me to drink Tonic Water and see if it makes a difference to tingling in my feet. The feet tingle from the chemo. It started with my toes and is creeping up my feet, almost to my heels now. Sometimes it goes away post chemo, and sometimes it doesn't. I've had it before and it went away. I've also had it in my fingers and it didn't happen with my fingers this time so that's a good thing. I keep trying to imagine water skiing with tingling feet. Might have to get a ski with a closed in shoe...no open toe for rushing water.
So far the tonic water hasn't made a difference. I'm wondering if it's because there is no gin with it. Don't you need gin to activate the quinine or something? (Feeling better means I want more freedom!)
Plans are for Harrison and family to visit in June for a wedding here in KC. I can't wait to get my hands on that little guy again!
Cathi
6 comments:
Pole position? Tonic is not activated until combined with Tanqueray (sp)...said Tank Kerry if you are a DeVore. Plans and ideas, that's what makes you tick, your Dr. knows you well. Good news to have a day off from clinic every now and then. What will you do with the free time? S
P.S. I think we should all post our word verification "word" each time we post. That's some crazy stuff. My earlier one was ANCESS, this one is GROPHO. I won't post what I think each of them means as this is a pg rated blog.
Thanks for all the new info! I love Dick Francis books (and was wondering what he thinks of Calvin Borel, the jockey who won the K. Derby and Preakness). They're my favorite companions for a road trip, along with Robert B. Parker books.
Interesting point about the tonic - your support team needs to do some research on that.
My verification word is either HERANG or possibly BERANG. I'll guess the wrong one to type, meaning that I get another one!
Cathi, it’s amazing how they can fine tune your treatment. Sounds like progress and gaining some freedom! Keep on keeping on.
WV - probver.
(Contrary to popular belief the verification word is not actually auto generated, it is really a new job performed by the ol’ troll under the bridge that used to ask for the word to pass. ;-)
All your news is so great to hear! 20 minutes on the treadmill is HUGE. And having a potential every-other-day to the clinic is amazing. It is encouraging to read about all the great progress you're making and all the plans the docs have. YEA.
My word: recion
As Sara observed, this is a g-rated blog so my daffy-nition would not pass the censors. But it doesn't stop me from snickering.
I think I shared one from long ago: snelly
Okay - mine's NITHA. Let's see what the DeVore girls make of that :)
Wonderful to hear you're feeling so good. There's no surprise you're not putting on weight if you're doing 20 minutes on the treadmill.
I guess gin isn't an option to accompany the tonic. Have you ever come across Angostura Bitters & tonic? Of course, you'd need to check it was allowed - it does trick the taste buds into thinking the tonic is a 'grown up' drink!
BTW wasn't it the potassium pump I wrestled with in the restaurant carpark? If so, you've got giggles to look forward to with the chelating agent :)
lots of love #2 GOT
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