Deb's Update: 04/04/2007 10:30 PM P.S.T.
Hi All,
I finally feel better today. This cycle was a bit tougher than the last one.... I actually felt yucky until last night/or early today. I actually felt nauseous on days 3, 4 and 5... and believe it or not, my body just decided to vomit on the last day just to say, "there, you're done, don't forget it!". I actually couldn't believe it because I was actually taking the Kytril and it usually did keep me from vomiting.
Of course I am still napping a lot... I take about a 3 hour nap daily I'd say... but then you guessed it, I can't go to sleep as early as I think I should (hence this blog update!). I finally got back into walking the dogs today... it had been almost a week that they didn't go on a walk (just frisbee in the backyard so thankfully Radar is into that too!).
I am going to head to the med oncologist probably on Friday to get labs done (even though she doesn't suggest it!). It always means a lot to follow your blood count to possibly explain why you are feeling like you feel (get it?). For instance: I am feeling very fatigued and even have a little light headedness.... so, in my opinion, why not take a look at my blood counts to see if I have any major anemia going on!? Why wait until right before the next cycle...? So, I've decided get labs done when I think I need 'em done.
Rae, you're the Glio CRA, when do your GBM subject get their labs done? Interestingly enough, Dr. Anita Kaul (my med onc doc) used to be at COH so she knows Somlo, Morgan, Shibata, Doroshow, etc... Maybe you should ask them if she's good enough for me to have as a medical oncologist! ;-)
Another reason I want to get my labs done more often (at least during this cycle) is because I really want to see how my counts are and if it will be safe to be back at work. If my counts are soooo low, I could get sick at work and I definitely don't want that. I'm starting to look forward to getting back to work and just moving on... of course I have envisioned what I will need to do at home: hire a cleaning lady, a dog walker and that sort of thing. I am just thinking that I will not have the extra energy to do that type of stuff if I am working an 8 hour day. So, as you can see, there are lots of things to think about in terms of my blood counts!
I talked to Dr. Yu at Cedars-Sinai the other day (last Friday) and his thought is that I will actually have my first vaccine before Cycle 3 (which starts on April 24th).... so, I guess the next few weeks I will be heading to Cedars-Sinai for stuff to be done! Stay tuned...
Ant's visit was great! She came on Wednesday and left on Friday (amazing because it was a LOOONG drive from San Francisco to Thousand Oaks). Unfortunately I wasn't feeling that great so we didn't really do anything fun... of course she told me that it's okay that we weren't able to do anything fun... her purpose was to come and help me! We actually went out for Reiki (okay Mollie, say something about that one!!!) .... I'm not going to get into what that is, but it was great... just a half hour for each of us and I certainly felt the guy's energy! She also cooked me a meal and of course we went to pizza since I was very interested in that. She cleaned with her steam cleaner that she brought for me and that was amazing too...
We watched The Secret as well... My Briard friend Noreen talked me into seeing that, so I listened.... I'm not sure how many of you have heard about that book The Secret but the DVD is apparently very much the same as the book, so that's the one I got. It is an interesting thing to read or watch/listen to, I'll leave it at that... It was a book on the Oprah list so that always does become popular doesn't it?
Donna, I'm glad to see that your daughter is able to grow plants :-) That is certainly something that you never were able to do, was it? Too funny.... but I'm sure your sunflowers will be bigger than you could expect!
I am still working on some sewing projects: everything from curtains, to chair covers, to quilts. Whatever I can do on that day! Usually the quilt stuff is the one I do the most. But, on the days I feel yucky, I can't do a darn thing... NOTHING!
That's it for now... it is actually time for me to have a snack and then head to bed. When my stomach says "feed me", I do it!!!
Love Ya!
Debbie
17 comments:
DEb you hang in there and keep your strength up, rest lik your doing and before you know it you;ll be back to work dont rush it your body needs time to heal.
Laura
COH
I will actually try to take some new pictures Mollie... that's something I can learn how to do like use the timer on my digital camera so I can take the picture of myself! I'm not sure Joey will want me to do that :-) (why were your comments in the last blog update that I wrote Mollie?)
Thanks for your support Laura!
Debbie
Deb,
Good to hear from you! Happy Easter! What will you be doing for the holiday? Have any guests coming in? I'm sorry to hear that you had to hurl....never a good thing is it? I probably haven't hurled since FSC...ha ha ha, did way too much of that back then. You're absolutely right, eat when your body tells you to, and nap when it tells you to, you've always been a fit person, so you know your body, listen to it and you'll do great! Hope all your tests go great and that you start getting more energy back soon! Love ya lots.
Love,
Nikki
Believe it or not, I actually know what Reiki is and one of my long time friends is a Reiki Master - go figure - she lives in northern California. I am so new age right? (NOT)
I will see you Tuesday Deb - whatever Mollie and/or Jess may be encouraging you to do to make me crazy I strongly urge you to not submit to their malevolent suggestions. Actually even the threat of something is enough so I guess they have achieved their desired end, huh?
Looking forward to dinner on Tuesday with you and Marge! Also looking forward to some warm weather - we are now having the winter me missed out on in December and January - crap!
Go Red Sox!!!!!!!!!!!!!!
Barbara
Yah a new message from Deb. I feel like i was waiting for it for a long time.
Well it's now two weeks since i ordered the steam cleaner, and no cleaner yet. And no message from the company on selling them either.
Your light hearted when you get up from lying down is a decrease in blod pressure. Probably the same thing with being lightheaded. Which all comes into play with the volume of blod you have in your system.
For everyone out there in blog land, Deb's quilts are wonderful and inventive as ever! She is feeling tired, but she looks great. The dogs love having her around all day and stick by her side.
Bye
ant
Hi Deb! Here I am playing catch up again on the blog. Always thinking of you though!
I was in Buenos Aires last week for an Investigator Meeting and got stuck out there because Brazil Air Traffic Control went on a hunger strike. Yes, not just a strike but a hunger strike. It only ended up lasting about 16 hours so really it was just a bunch of people skipping dinner. In any case, I still got stuck for a few days since many flights were sold out. This happened after I got notification that I'm getting laid off at Pfizer. Can you believe it- twice in a year and a half. How pathetic!! But it's not really such a bad thing this time so no worries.
The worse part of my delayed trip home is that it threw off my ability to conspire with Mollie for Bab's visit to California. Yes, Baris, you got lucky!!
Well Deb, I am glad to hear you are starting to feel better. I agree with you on wanting to keep an eye on your blood counts. Could you go back to work part-time to start? Seems like it is a lot to go back full time right away. Oh well, why am I worrying- you are the master at figuring out this type of stuff!
Love,
Jess
Reiki? Oh grasshopper - You forget that I am a nurse, and have travelled many paths seeking the way to lightheartedness. I also attended a Spiritualist church with a former partner and had many interesting experiences which still wake me up suddenly. In nursing school back in the 80's we even had Reiki lectures - One of the guys in my class made the hair on my neck stand up when he was trying the techniques - but I think that was because he was in a heavy metal band that threw raw ground beef into the audience and it was just super creepy to have him standing that close to me. And although I give off about as much energy as a rubber chicken, I do give a pretty good massage. The closest I get to Reiki now is a leaf blower.
I'm thinking Baris shouldn't be lulled into a false sense of security just because Jessica got stuck in Buenos Armpit. Deb has had some free time, and I have e-mail and a telephone too, ya know. I can be devious on my own...
Can't wait to see what those blood counts are. Sorry you're feeling so tired all the time. Perhaps you could teach Nala to cook. I'd never trust Radar with that task - he doesn't eat enough. Nala's more responsible. Radar could be tasked with sweeping - teach him to lie down and crawl around.
Love ya man!
-Mol
Hey, I went to nursing school in the 80's too but, what the heck is REIKI? I've also not experienced the sensation of neck hair standing on-end when in the vicinity of a meat-throwing-head- banger. I feel deprived somehow....
Mol, you are a hoot!(oops, don't let it go to your head)
You certainly have touched many lives in positive ways, Debbie. I feel the love and support of your family and friends every time I read this blog. Hope your stomach is settling and the naps are helping with your energy level.
Much love and prayers,
Jeanne
I will be trying to write another update in a few days since I will have some things to tell you about. I am headed to the doc to get labs done tomorrow full CBC and Chem 18 panel also.
I talked to the vaccine Cedars-Sinai folks today and guess what? NOT APPOVED YET budget wise... so, I am scheduled to start after cycle 3 which is also when I'll be having the next MRI anyway (beginning of May). Tomorrow's lab results will be faxed to C-S hospital just so they know what my WBC count will be (which is crucial for the leukopheresis).
Have had my hair dyed and cut... oh boy, it's a little shorter than I can remember but of course it's just been because I hadn't had my hair cut in MONTHS! It needed it...
More yucky feeling stuff just sort of ended one full week post the dosing days of cycle 2! Stay tuned for those details...
Feeling skinny these days so I'm headed to a nutritionist tomorrow. Of course today I added all kinds of junk (chocolate, meatballs, more chocolate, crackers and soy cheese, more chocolate...) but I think I needed it! Boy did my energy go up :-) I'm guessing it was the chocolate.
Joann, please thank your sister Janet for the chocolate she got me for my Christmas gift!!!! Oh, and I have been eating your freezer food all week. I even brought some of the lemon squares to see the FS lady at a friend's house this weekend and you sure are a cooking hit!!! (Not just with me!)
Jess, do I need to get you a job out here in Thousand Oaks? Come on over... you and Mark would love it out here!!!
Speaking of dreams, last night I dreamt that I was only weighing 115 lbs!!!! YIKES... so, I'm assuming it's NOT true, but hey, I have decided to get my own scale just so I can keep track myself instead of waiting for the once per month doc visit for the weight.
I think it's also Reiki time again at some point this week... let's let the healing continue!
Barbara will be here in Thousand Oaks with Amgen tonight through Wednesday... so, stay tuned for dinner updates on Tuesday most definitely and hopefully Wednesday as well.
Jeanne, we'll have to chat sometime about quilting.... I didn't know you were a quilter!!! Thanks for being a cousin that continues to leave comments... it means a lot!!!
I guess I wrote more than I needed to, but I'm sure I will have more details after these events are done!
Love you guys!
Debbie
OK Jeanne: Here's Mollie's Psychobabble for the day:
The word Reiki is made of two Japanese words - Rei which means "Higher Power" and Ki which is "life force energy". So Reiki is actually "spiritually guided life force energy." Reiki is a stress reduction and relaxation healing technique. It is also called "therapeutic touch", performed by "laying on hands" to manipulate Ki, the "life force energy" that flows through us and is what causes us to be alive. If your Ki is low, then you're more likely to get sick or feel stressed, and your Ki is high, you're more likely to stay healthy and be content. The practitioner may or may not actually touch you, but will pass their hands over you - adjusting your Ki fields and balancing your Chakras - their hands are usually very warm following a session, and individuals undergoing a session claim to feel the energy passing from the hands of the Reiki master.
How's that for an open-minded explanation?
It's not that different from the time I was playing the piano for that Church in Alabama when that small circle of people surrounded me "speaking in tongues" and "laying hands on me", and I sprinted out the door to my car in the middle of the service, driving away post haste. But then again.... Maybe it is.
Love ya Deb!
-Mol
Deb/Mol,
I swear I learn something new every day! Thanks for the Reiki explanation---I had heard of theraputic touch but, not the term 'reiki'. Sounds like quite an experience. Hope it helps, Deb!
Speaking of quilting/sewing, it's too bad we don't live closer. I could seriously be one of those old ladies on the prairie who sat in circles, drinking tea, and chatting with others while stitching. Of course you wouldn't catch me doing any of that menial stall cleaning, cow milking, fence post digging stuff. I'd be collecting different colored feed sacks, selling the filthy chickens to pay for it! My next project is a flannel baby quilt folowed by placemats for my dining room. I always seem to have more projects than I have time to devote to them! As they say, "so many fabrics, so little time", right?
Feel better this week and keep us posted on your labs when you get them. Praying for another clean MRI! Hugs, Jeanne
Deb I've been looking for the "right" scale and we will be ordering it for you this week. Trying to get things done with our crazy travel schedules here is a challenge.
Too bad about that darn vaccine not being ready for you before your next cycle... the sooner the better to keep that cancer beaten down.
Looking forward to seeing you sometime soon. Always thinking of you back here in MA.
Dan, Mary and Logan
Hi,
I also had no clue what "Reiki" was so thank you for the very detailed explanation! I thought maybe I should turn on the TV more often or read the paper. Being a stay at home mom - I don't get out much to say the least and I don't really watch too much except for the Doodlebops -ahhh and Mickey Mouse Clubhouse.....
I hope that works for you, Debbie! It sounds very interesting and maybe I coulde use it too!!! Good luck with everything and I check the blog all the time to see what's going on! Take Care
Galynn
Well - I am just back from Thousand Oaks - hard to believe that Debbie and I were having pizza at her house just last night and here I am home already. My dogs went crazy when I brought lingering Nala and Radar scents back with me - I grabbed the airport shuttle from Debbie's house so a bit of her two puppies made it home with me - that would be trace evidence for you CSI buffs (I love that show).
Debbie - it was great being able to have dinner with you each night and I enjoyed hanging out at your house eating pizza and watching the Red Sox (lose, sadly, in that one-hitter that the Seattle pitcher tossed at them). Great house and piece of property - I am honored to have gotten to see the red screen door and all the other FS'icized things around the house.
I meant to tell you that your hair looked fabulous!
Am going to crash and burn now - the red eye is a killer, especially when you get delayed in your connecting city!
Barb
So what's happening now? Anything? Hello?
I've been checking in too for any new scab updates, threats between Baris and Mollie, pictures of hats made out of dog fur,.......... anything!
Jeanne
oh Jeanne - you make me laugh - thanks :)
Barbara (Baris)
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