Deb's Update: March 15, 2007 12:30 PM PST
Hi all,
I thought I should write an update on how things are going here now that it's Cycle 1, Day 17. Cycle #2 begins on Day 28 which will then be called Day 1. Get it?
I think that although it doesn't feel bad getting the Temodar it can make me a little tired. I think it's definitely my body trying to make sure that I should do NOTHING! You that really know me, know that that's not easy for me since I am usually a high energy person :-) So, I honestly have slowed down if you can believe that...
I know this will amaze you guys.... Finally the one round piece of scab came off two days ago... it was almost exactly 4 months post surgery! Interestingly enough the underside of it was FULL of little hair stubs.... I'm guessing that my hair was keeping that darn thing on my scalp! I still have "layer 3" of the longer scab left so stay tuned on how that one will look. I am still losing hair on the radiation part where the radiation "exited" my scalp. I can't wait until some of the bald spots grow back so that I can finally go to my hairdresser to make my hair more even.
I am still doing yoga and some slow exercise DVDs a few times per week just to keep doing SOMETHING. I do have to do it at home since I am not able to go to the Amgen gym because I'm out on disability. I also usually walk the dogs about 4 to 5 days per week for a half hour or so.... they love that! I am also getting into the deep breathing and relaxation just to keep myself balanced with everything going on. Of course sewing is actually slow and relaxing enough which is great for me since I love to do that... of course there are a few things that I'm working on :-) Last Thursday, Cliff's wife Christina and I headed to the fabric store to pick some fabrics for a quilt out last week... we went to lunch too, so that was a good day. Of course it was followed by a nap!
So, I can only do things little by little. It's garden time but I literally do a little here and there. Thankfully my friend Kimmie and my Mom have helped me do lots of gardening.... basically I just watered things and just slowly dug some of the soil for a few of the small flowers. Kim ended up coming back the weekend after my MRI to help me do some things around the house which was a big help. Then on this past Saturday night, Mom and Helen came here from their Hawaii vacation. It was a quick trip but it sure was good to see them!
This Tuesday Kim's sister Wendy and her 4 year old son Spencer came here for a visit... Spencer loved the "farm" neighborhood... Horses, llamas, turkeys, ducks, chickens and of course my 3 pets! Of course we did head out to do lunch which was great too. Wendy bought me and the dogs some Sprinkle Cupcakes which is from the pastry store called "Sprinkles" which I never heard of... they sure are yummy... even the dogs liked the doggie cupcakes! I napped after this visit... Four year olds are high energy :-)
Next week I will be heading to the Med Onc's office for labs and a discussion about Cycle 1, how I felt, etc.. and Cycle 2. I am just wondering if the dose will go higher since some people's Cycle 1 is lower than all of the remaining Cycles... But, I vaguely remember my Med Onc Doc telling me that she would just start me at my maximum amount. We'll see how the lab results are based on my dose... I also have to remember to call Dr. Yu's office next week about the vaccine study... he said that he should be able to start it AFTER Cycle 2 dosing. Stay tuned on that one...
Donna and Mollie, I know you guys are both interested in my dreams, right? I loved your last dream with me in it Donna.... too bad you never got to the end of it! So, here is what I am basically dreaming about: the dogs, my house, my gardens, and even shoes/sandals sometimes... not sure why, but I think it's so hard for me to find shoes that fit, that I even dream about it!
I have been so happy to get some comments from the Briard folks recently. I have only met a few Briard people at some of the shows that Radar and I did in CT, but it's nice to see that Briard people are thoughtful even if I have never met them! I am hoping to go to the Briard Club of California dog show in Pomona, CA (about 1 to 1.5 hours from here) which is in May. Radar won't be in the show, but I sure will be excited to head out to see LOTS and LOTS of Briards!
That's it for now... I am actually going to take a quick nap since I got up too early this morning :-)
Love ya!
Debbie
14 comments:
Hi All,
Just thought I would let you all know that the third layer of the last fabulous scabuluos is now off! Yup, it happened today so it's one more thing to move forward from.... now if I can only start growing some hair back...
-FS Debbie
For some reason, I am having trouble posting a comment. This is only a test.
I had an odd dream the other night. I dreamt that I had a lump in my right side, then I pulled out an apple (with the stem). I guess I should make more trips to the gym (or maybe not, it's not as though I pulled out a piece of cake or anything).
On a sewing note, I started and finished the silk curtains for my bedroom on Saturday. I, of course, haven't picked up my quilting again since Meredith and I left CA, but I'll get to that . . . eventually.
Be thankful for your nice gardening weather. We are buried with snow at the moment and it is snowing again tonight! At least Spring begins tomorrow and I can almost feel the warmer days ahead.
Glad to hear that the scab is gone, but have you ruined your chances of making the Guinness Book of World Records? Owen wants to know.
Lots of love and hugs from here,
Amy
Hi, Deb:
You don't know me but I'm a classmate of your good friend Todd; I've been lurking here for a while as I'm in the pharma industry, too, and used to run the commercial side of an oncology business unit for one of your competitors. I'm pleased to hear you're doing so well and wish you the best.
My reason for writing is I'm trying to track down an old friend, Stewart Turner, PhD, a Brit who used to work for me and who is/was with Amgen in the CR dept. for some time. He ran cytokine CTs for a while. If this rings a bell with you, please let me know here, otherwise keep up the strong recovery and great attitude, it surely helps and makes a huge difference!
Don (from NJ)
Hi Deb,
Great news about the scabs! And, it's great to hear that you are dreaming.
Also, slowing down can be a good thing for us A types. Sounds like you are being realistic in your selection of activities. Focus on what you CAN do right NOW.....and don't worry about all the things you used to do. Walking dogs 4 to 5 days a week is more exercise than many people get. Your stamina is amazing in light of all the things you are doing to manage your own care. Keep up the good work.
Talk to you soon!
Warm beacons always,
Bea
Don,
Just go to the whitepages.com website because I think your friend may still be here. There was a Stewart Turner in Lake Sherwood, CA which is close enough to Amgen. I can't access any Amgen people info right now, but you can just contact the one you find on whitepages.com.
Debbie
Hey Deb!
I'm glad to hear that you're doing so well. Remember to take those naps, they are a wonderful thing. Soon you'll be back at work longing for the days of naps! You are so lucky to be able to have your garden full of flowers now. I'm staring out at a yard covered in snow. I was just out there a week ago cleaning up branches, etc... and then a foot of snow falls. But, you know how NE weather goes. I'm hoping for warmer weather soon.
My uncle is starting his chemo. pills next week. I'm praying that they work as well for him as they are for you. They worked great for my mom a few years ago. I know it depends on the person and kind of cancer, but hopefully they'll have the same results for him.
Keep us updated on how things are going. Take care!
Donna:)
Deb,
Thanks re: whitepages.com, I'll give it a try. I thought you might know him personally, but it surely is a large company.
Hope you don't mind my lurking...Todd was usually on his way to my place on the Cape when he went through Groton/New London in recent years.
Be well,
Don
Hey Deb
Glad to hear your doing well. So you started sewing again; thinking about starting up a quilt business, i'm sure your first customers would come right from this site!
Have you thought about bringing Nala and Radar to the dog park in town? Paul enjoyed bringing Oscar there.
Glad to hear about your afternoon naps. I love noon time naps.
Love lots
ant
Dude - I dropped off the planet for a week and have been missing you. It has been the crappiest week of our home-owning existence in PA. Literally. Started off with a 1st floor clogged toilet overflowing and resulting flooding collapsing the basement ceiling in a guest bedroom spilling sewage everywhere. Plumber visit #1 results in a recommendation for having our septic tank cleaned. (didn't need it - it was done 2 years previously) So we gamely played along, had the septic tank cleaned at 0730 over coffee. Very strong stomach, and all. Didn't fix the problem. Plumber visit #2 results in an auger being run from 1st floor toilet to septic tank. Voila. Problem solved. For exactly 6 hours. Plumber visit #3 results in two plumbers coming out with an endoscopic camera and other very interesting machinery and determining that my 17 year old house has pipes that are greater than 2/3 blocked with concrete-like sediment from hard-water, thus all the drain pipes in the house must be replaced. Problem: none of these pipes are visible as the moron who built the house dry-walled the entire basement. Plumber visit #4 results in excavation of my basement walls and ceiling, replacement of pipe and solving the problem. In between all this, the home restoration company came out to rip up the carpet in the basement bedroom that smelled like a monkey cage, bag up the bed, etc and spray it down with anti-microbial stuff. The home-owners adjuster also came for a visit and told us the plumbing problem wasn't covered, but the damage was. The next day, our hot-water heater quit working. Plumber visit #5 replaced the lower heating element which worked for exactly 10 hours. Plumber visit #6 resulted in replacing the lower thermostat, so we have hot water now, but when I got up this AM, none of the electrical outlets in the kitchen are working....Keri wants to have our house spiritually cleansed. I want to set it on fire. Stay tuned to see who wins. Anyway, I've missed you, and that's where I've been, and what I've been up to. So Baris can stop e-mailing me and asking if I'm dead or have been kidnapped....
Keep kicking this thing's butt.
Love ya man!
-Mol
Well now Mollie - seems you have been visited by trials of biblical proportions such that Keri's suggestion for the house seems appropriate and in keeping with the theme - quite Old Testament-like, Job!
Hope that your house problems are behind you though I suspect that that is where you are still feeling them, no? Ah yes, the infinite joys of home ownership - better to have been abducted by aliens.
Speaking of home problems, Deb - how is the termite situation going - got it under control? I think I would prefer termites over septic problems, but hey, that's just me.
Starting the contractor gig today - should be interesting - I will let you know how it goes - I already like it just because of the short commute.
I would take your dreams over Mollie's current waking hour nightmare any day.
Keep going at a pace that allows you to engage in your activities - it sure sounds like you have a great awareness of how you can spend and save energy in a way that works well for you - great to read your updates as always - keep 'em coming.
Barbara
I'll update the blog tomorrow most likely... tomorrow is already Cycle 2, Day 1 of my Temodar chemo. So, I'll have to take an hour off to do nothing (no eating even!)... that's when it's easy to write the blog update!
Unbelievable issues Mollie! I'm hoping that you're done with all that at this point... not fun. But, of course we were ALL wondering where the heck you've been...
Keep watching for the next blog update although there isn't that much to put in it since I'm laying kind of low because I'm a bit tired.
Debbie
Please, Barbara...Let's not invite any more trials and tribulations. Frogs or locusts would probably be next, since we sort of had floods and the hot water heater/wiring issues resemble fire and brimstone. I swear I must have been a REAL ick of a person in a former life - either that, or my mother is doing this to me. She has been whipping the hard right wing e-mail my way in any case, so I won't tell her that some witchy woman Keri knows is coming out to spiritually cleanse the house this week. (I'm half kidding - she is coming, but she's not a witch.) I have some white sage and a huge honkin' clam shell, and could do it the Cherokee way, but whatever.
So, Deb - you have trouble finding shoes that fit? Get this: I work with a woman who proudly announced to all of us at the elevator one day that she orders all of her shoes from a cross-dresser catalog. They have handbags to match every pair, (even flip-flops) and deliver every purchase in lovely boxes that say, "for the princess in all of us". I could see if she's willing to share her secret shopping site with you...
Sizes start at 10. You can't make this stuff up.
Sorry you're tired. Are your blood counts OK? Do you need a red cell stimulating hormone like Erythropoietin? I've been wondering about that for you. I know it's nearly impossible for you to take it easy, so I'm glad you're napping and listening to your body, but I can't help but wonder if something like that would help.....
Love ya man. Can't wait for that update.
-Mol
Hey I like the semi bald look, gives you some of the Sinead O'Connor attitude (as if you needed more attitude!). I know that I've been "quiet" for some time but trust that I am there with you in spirit moment to moment. Hello to "the pack" Nala, Joe and Radar.
Love, Todd
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