So here it is Thursday, and I am still waiting for that "week-off-euphoria." At least today I was able to eat a decent breakfast and I have on real pants. And I have felt well enough to have a series of visits, mostly from college friends. Sure nice to have someone to talk to whose life goes beyond keeping track of the meds, injections, and trying to think of something to eat that doesn't repulse.
Yesterday, for what ever the reason, was not that good. I was exhausted all day, took three or four long naps, and never got outside. I think I am over due for a blood test to see what is happening. That is one of the items to be discussed tomorrow with my Oncologist. I am feeling that I don't see him frequently enough (it has been three weeks), that the blood draw before my infusion is inadequate--coming at the end of the week off--and that I don't have a good enough sense of what we are trying to do with my regimen. So unlike the first visit with him, I do have some concerns to address. I would like to see him become a bit more proactive.
Looking forward, the next two "interim weeks" have something to get excited about. The next will include a visit from our daughter's family, including Kaylin. Holds the promise of some "great poppie time." And the following will be extra special. Our life-long friends, the Barrs and Adams, are planning a weekend visit. Haven't seen them for some time. It will be great, regardless of how I am feeling.
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Poppy, hope you are feeling better today . Kaylin is sitting on my lap and I think she said she is excited to see you. It came out more like a shriek. :) I know what it meant though. We're all excited to see you, I cant wait. Love ya! Bear.
ReplyDeleteGive your friends a hearty greeting from us. We're glad you have something good to look forward to. Give your docs hell...lighting a fire under someone often brings results...either a burned butt or an answer to a question. Always thinking good thoughts for you and Emily. Marion and Bob
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ReplyDeleteThe third time is a charm
ReplyDeleteGo in armed with your list of questions, Dick! Another set of ears to validate what you are hearing and take notes is also helpful! Emily?
At times, the only appetite I had was for information, and it was insatiable! I wanted to review all the research I could find on my treatment regimens (that's what doctoral programs can do to you :-} and my oncology team complied.
The best caregivers will take all the time *you* need to address all of your concerns at each visit and provide you with all the information you need along the way.
Scott Hamilton has put together an informative website where you can learn more about your particular chemotherapy regimens, how to manage side effects and learn various strategies on how to "eat well" (an oxymoron) during treatment - chemocare.com
There is a reason why they do the blood draws at the end of your off week, just before your next infusions; they want to be sure your blood counts have bounced back from their lowest point - the nadir - which can be anywhere from 10 to 14 days from treatment. They want to be sure your blood counts are back into the "safe to treat" range.
"Great Poppie" time with Kaylin and time spent with your dear friends will help you bounce back too! And you'll have a *lot* more fun! Glad to hear *you* are being proactive :-)
I hope you have a great time with family and friends. I'm always up for time with the kids and grandkids--that's the best.
ReplyDeleteI think keeping a list of questions/concerns to discuss with your doc is solid advice, and will help you know the what's and why's of your treatment. Deb's Website suggestion is a good one too.
Thinking of you and Emily and sending many thoughts and prayers.
Penny and John
Hi Dick! Do you need a good chuckle? Ken N keeps telling me to audition for "Steele Magnolias" - Now isn't that just a hoot? I told him I haven't been in a play since high school when I was a cowgirl and rode one of those stick horses - so he must think that counts for acting experience - HA HA!
ReplyDeleteHope you are feeling great for the visit with your family and out-of-town friends! When you're up to it and are out and about, stop by good old Dana Hall for a visit! Still praying every day!
Nice visitor list! Nothing like a grandbaby to bring healing energy. (I promise to start writing complete sentences before classes begin.)
ReplyDeleteI support the assertive patient path, too. You are the Maestro!
Maestro,
ReplyDeleteI found a helpful book, The Chemotherapy Survival Guide (3rd Ed., 2009) by McKay and Schacher. Also, calling the oncologist's office got me some incredibly helpful coping ideas. I have been living on the brat diet, with tenative forays into an egg, yogurt, and the like; with my new best friend, Pepto, and am making it through. I feel like writing new words to the carol, "On the first day of chemo...." But going to work and church choir and seeing my family when I'm not asleep or yucky is about all the energy I have. Ask lots of questions and find info out, there are so many things to try and some of them really help!
Praying for you every day. Shellee
Some days it's the little victories, the dangling carrots that keep us going. This cold, grey month is a good time for napping, anyway, while your body quietly, but steadily works on healing itself. Nonstop prayers and love and positive healing energy....
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