Deb’s Update: February 16, 2007 9 AM P.S.T
Hi All,
Sorry for the delay in writing a blog update. I have been feeling better than I did the last time I wrote the update since I am about 2.5 weeks post the radiation/chemo treatment. My head swelling is definitely still going down but it's not DONE yet. I guess that the radiation side effects such as hair loss, swelling etc... continues for a few weeks post the last day of treatment. So, I am hopeful that it will only continue to get better now!
Based on the last picture, I'm sure that you could all tell that I have much less hair than I used to have... Radar has more hair than me and he had matting and needed to get some of it cut off!!! Maybe I should be living in Ajo, AZ where he was :-) I am still losing some of the hair so I'm a bit bummed with that since I am figuring that I really don't need to lose any more! Thankfully most of the hair loss is still covered by the other parts of hair that will not be falling out since they were not radiated. NO WIGS... that's my goal.
Guess what else has gotten better since chapter 1 of the treatment is over? I am dreaming again when I sleep at night! YUP, I wake up in the morning and realize that I actually had a dream... I can't even remember the last time that dreaming happened! Definitely long before the surgery I'll bet... Of course the dreams aren't stunning and amazing, but I'll take 'em!
I have made the decision to not work part time this coming Monday after the discussion with my medical oncologist. She has suggested that I see how I feel after cycle 1 and cycle 2 of the Temodar before I decide when I can absolutely go back to work full time. Technically, due to my disability there will have to be a full time position that defines how much (the percentage) of work that I am able to do... I am still finalizing my understanding of what the long term disability facts are... it's a tough thing to figure out but Amy Manning is majorly helping me with that one! THANKS AMY!
On this coming Monday I have a follow-up appointment with my radiation oncologist... hopefully he will think I'm doing well. I also have an appointment with my med onc doctor next Thursday to discuss more details in regards to the Temodar cycles, the labs, etc... Oh, I forgot to tell you that I had an EEG last Thursday at my Neurologist's office... I'm guessing that it was "normal" because I haven't heard anything about it.... My guess is that if it wasn't normal, my dose of Kepra would be increased (that's the medication I take for seizures)... I will call them soon just to keep myself posted.
Chemotherapy Cycle 1 begins on February 26th or 27th... it's taking the 5 days of Temodar at a much stronger dose and then taking about 23 days off before doing it all again. I will obviously have labs done for each cycle as well just to make sure that my cells aren't too low. If they are too low, the dose may be changed, or I may be given things to increase my cell counts... stay tuned there.
I heard from Dr. Yu (Cedars-Sinai surgeon) this week. He said that it is okay for me to start my Temodar cycle 1 and still go onto his vaccine study. If my counts are too low to do the leukophoresis then they will put me on G-CSF to increase my WBCs. Of course I will have to screen and meet all of the inclusion criteria to participate on that study... I'm hopeful but my fingers are crossed! I have a MRI at Cedars-Sinai on March 6th and an appointment with Dr. Yu that same day... stay tuned- I am hopeful that I will have a great MRI! Dr. Yu was of course shocked that I still had my scab but was impressed that I didn't rip it off! He continues to be impressed at my discipline on myself!
I started walking the dogs again... just about a mile which is a good thing for both them and me I'm sure. Like I said, I don't need to burn calories and neither does Radar... he's a skin and bones kind of doggie right now but he's certainly excited about being home and is eating MAJOR now. Of course I think that Nala needs the walk since my neighbor has been really giving her daily treats and she's not getting as much walking/exercising with me.... oh well, she's happy so I'm sure she'll thin out too now that she and Radar are playing and running in the yard all day. I think I should buy a scale at some point just so I can pay attention to my weight on a routine basis... xxx Okay, almost enough about my major dog stories! But, I'm sure you can tell that I'm very excited to have both dogs now. So, here is the Thelma and Louise trip story...
On last Saturday ThelMA and I left CA at around 6:15 AM for a long, long trip to Ajo, AZ to get the Runaway Briard... Of course I couldn't help her drive so she did an amazing job at that given that she wore her cool sunglasses. Thankfully it was a stunningly sunny day and it was a Saturday so the traffic was perfect- NONE! I was so excited to be going to get Radar so the 7 hours that it took to get there didn't bother me one bit... of course Tom Tom told us how we needed to get there! I won't even get into that since there were plenty of times that we ignored Tom Tom since we didn't believe her! We arrived in Ajo, AZ around 2:15 PM their time... not an overly long ride since we even stopped for gas and lunch! About a half hour prior to our arrival I was so damned excited that I was even seeing dogs in the clouds that looked like Briards!!! Seems crazy huh? I realize that but what the hell, I couldn't wait to get there... :-)
The Briard Rescue Kennel was basically in the middle of nowhere. Certainly Thelma and Louise were very stylish in that area of AZ as you can well imagine!!! Even the Element was pretty popular in that neck of the woods. Debra the Briard Rescue woman was amazing! She had done so much with Radar and he seemed to be happy with her... she also had him trained to do (or not to do) certain things so that was great. She has a friend Dale who used to come over to brush and care for the dogs when Debra was busy, so we got to meet her too... both of them were just so kind that I had to give them both hugs when I got Radar back! Thelma tried to take pictures of that but of course Radar the actor couldn't control himself and had to keep jumping up and down to say HELLO to me! Of course he decided NOT to be the Runaway Briard this time around! He was hooked on me obviously...
Okay, so on the ride home from Ajo, ThelMA and Louise had to bring a Labradoodle with us to a woman in San Bernadino, CA (directly on the way home right near the freeway)... Apparently "Lava" was thought to be a Briard mix and so he was given to the Briard Rescue place... of course Debra didn't think he was a Briard mix so she was giving him back to the woman who gave them to her... Lava and Radar got along just fine for the 8 hour drive home! We did hit a bit of rain/mist about an hour prior to Thousand Oaks, CA so that was a bummer, but ThelMA did an amazing job of driving ALL DAY! What a star, huh? Of course we both went to bed when we got home at 10:15 PM!!!
I have definitely decided to continue to donate some money or things to the Briard Rescue Kennel (of course not until I'm back at work!) because it really was amazing how much they did for me. The one great thing about that- it's tax deductible! So, if there are any of you that need to find a new tax deductible place to donate, pick them!!!
Mom and I also decided to do some things around the house the following two days she was here... she did so much that I never would have imagined it! She dug a huge hole in the ground to put the Doggie Dooley (a place to put the dog poops... sorry for that info!) which had to be 24 inches deep! It's a huge thing so it was a long, long process!!! It's done and of course I scoop the yard a few times per day just to use the Dooley :-)
We also both decided that we could re-define the beauty of the bathroom vanity in the master bathroom! That's right, we adding molding to flat and boring vanity drawers and cabinets for under $20! I think we could have been on HGTV "design on a dime "show! It came out great and of course Mom decided to paint it with primer and said she'll do the rest during her next visit. I may paint it since I think I can definitely do that! I'm hooked... of course I will need a new counter but of course that's on that back burner right now! Unless of course any of you guys know how I could get a granite or nice vanity counter for a cheap price!!!
Last but not least, Mom even decided she could brush Radar the day after we got home! An hour went by and he still had TONS of brushing to be done... That was enough for ThelMA and Radar...I do a little bit each day but I'm technically on about hour 4 or 5 and I think I'm done! He has not more matting thankfully... it'll be bath time next brushing! I am hoping that I will get my right hand callous back so that brushing him won't hurt my hand!
Okay, that's enough for now. I will continue to keep you updated...
Love,
Debbie
15 comments:
Debbie, glad your visit with ThelMA was fun and the trek to get Radar went well! Good luck with the next round of doctor visits........Jeanne
Mom is a saint!!! How on earth did she do it? I guess there's no doubt that she loves you very much. But, just remember, Jimmy is still her favorite.
congrats on your successful excursion - Canine Recovery And Passage - C.R.A.P. - just keeping with the Doggie Dooley theme.....and no, Mollie, use of the word theme is not an indirect invitation to pen another musical extravaganza! I do not want to read lyrics about backyard poop patrol set to the tune of Tom Dooley of all things!! (the younger crowd will not have heard of this song - Kingston Trio I think - also a group that most will not have heard of either - guess I am giving away my age with that reference).
I have not met your sister, Amy D., but I know I like her - her post made me laugh out loud.
It was good to talk to you the other day - I will keep you posted on the RI job possibility - ironic to say the least!
Catch you later.
Best,
Barbara
Good one BAB. Tom Dooley IS a Kingston Trio tune, and perhaps I'll come up with a remake for your personal pleasure, as the two of us are probably the only ones familiar with the original. Glad to hear your family is back together.
Sorry to hear you're still losing hair, but for the love of God, how much did you have to start out with? You've been losing hair for about two months now, and I can't tell a difference in the photos. Were you an ape to begin with and we never knew? Save all of Radar's brushing cast-offs and you can start a Briard weave if necessary. If you were watching the Thanksgiving day dog show you might remember the freak woman who had a sweater made from her dog's excess hair. (ick) Yeah, right. Cause what I want to do after I brush the 4 I've got, or vacuum the entire house, is save it all up and make something to put on my body. I want it OFF me. Far away.
Hey, will your mom come stay with me for a couple of weeks and remodel some things? Maybe dig some holes?
When can YOU come to MA. for a visit?
Love ya man.
-Mol
Mom says anytime Mol.Deb does have bald spots I thought the same as you but she prroved to me otherwise when I was there last week.You have the greatest since of humor next to me of course,I would love to meet you someday.I also know the Kingston Trio,I'm old also...Dianne,Debs Mom
Hey, my mom does knit and of course I did tell her that some Briard owners keep the fuzzy undercoat, make yarn with it and make a hat or something for themselves... check eBay, you may see a dog yarn hat!!! Of course Mom wasn't that excited about knitting with Radar's fur! Who wants just a tan hat? :-) If Radar's undercoat was dark brown, I could weave it on my own head!
Debbie
Hi Deb, I saw this study and thought you may be interested as an FYI...
-Alicyn
Surgery starts in Northwest's phase II DCVax-Brain glioblastoma trial
IDDB, 15Feb2007
Northwest Biotherapeutics has operated on the first two patients in its US phase II intravenous DCVax-Brain trial for newly diagnosed glioblastoma multiforme. Complete enrollment in the phase II glioblastoma trial is anticipated for the end of 2007.
All 141 patients are to receive full standard care and 94 patients will also receive the dendritic cell-based immunotherapy post surgery.
Patients will undergo three initial immunizations at 2-week intervals, followed at 2- and 4-month intervals by four booster injections. After the first year of treatment, patients will receive the drug bi-annually for an additional 2 years.
The drug is also being developed for prostate, head and neck and lung cancer.
Deb....you can not tell at all that you're losing hair. Thank God for think hair, huh??? It sounds like you and your mom had a great trip to the Briard Rescue in AZ. You must be thrilled that everyone is under one roof again. How is everyone getting along? Is the FS working for Radar too? Anyone visiting you now? I sure wish I was one of your visitors. My brother is one his way out there tomorrow and I'm so jealous of him.
Hey, for some reason, I can't stop trying to remember the name of that guy you used to hang around with when you lived in Herlihy Hall at FSC when you came back from England. Do you remember?? I know, a strange person to remember, but he's stuck in my head. I remember exactly what he looked like and that he knew a lot of random things, but his name eludes me.
I hope you continue to feel good and I look forward to reading more from you soon. Take care!
Donna:)
Deb,
Love reading your posts! Hmmmm, need granite huh? Well, you do know that Joey and I are the proud new owners of our own flooring/home remodel store...we DO granite!!!!! Would be a tad bit difficult to do that long distance though. We're almost done remodeling our entire condo...I'll send you pics, you would be impressed, we did it all ourselves!! My parents drove down this weekend to visit...they're leaving toward the end of the week...go Mark and Jo-anna, little road trip for them too! Anyway, glad to hear that everything seems to be going in the right direction. Keep strong and in good spirits! Think you could make it to florida in a year? Wedding Bells may be ringing :)
Love ya lots
Love,
Nikki
Wait..........I think I finally remembered his name. Was it Tim???? (You know how things like this bug you until you figure it out.)
Donna:)
Donna, I was thinking it was either Tim or JC that you were thinking about... Does that help you!?
Nikki, I am thinking that I could come to FL in a year... yippee, wedding planning!
Alicyn, I think this is the same study that I will hopefully be doing! My fingers are still crossed on that one. I should start screening after I'm done with Cycle 1 chemo (on March 6th).
Debbie
Oh, it definetly was not JC. Who could forget him??? Didn't we end up at a party with him when we lived in Canton? How did that happen?? I believe that it was Tim I was thinking of. Kind of a round faced guy with a really skinny girlfriend. Not sure why he was stuck in my head.
How are you feeling?
Donna:)
Round faced guy with a really skinny girlfriend? Wow. Nice. Please don't ever describe ME on here. I could hear it now, "Really weird-looking chick with big nose, two chins, glasses and hair that sticks out all over."
Gosh.
Love Ya Man.
-Mol
Hey there Deb!
Apologies for not writing for so damn long. OK- so I have to catch up fast here with my comments because lord knows I have many additions…
#1- You look absolutely fantastic in your pictures. I don’t see the head swelling or any hair issues- those curls cover it up. Better yet was reading about how great you are doing.
If the hair loss does become an issue my preference is that you go with that yellow sweater trick Amy mentioned. Be unique.
#2- Radar reunion. Valentine’s Day couldn’t get any better than that.
#3- Mollie’s Beverly Hillbillies song made me piss my pants. It may have surpassed her lyrical conversion of “It’s a Small World After All”, which was about a bad case of gas she had after eating too many beans. Kristin CF and I had to beg her to not sing it out loud in Magic Kingdom when we were on vacation (oops I mean when we were attending the SOCRA meeting) since it was not meant for children’s ears. Seriously, we could’ve been kicked off the ride…
#4- The Kingston Trio.
a) Someone needs to let the KT know that Babs has regenerated their fan base on your blog. They probably should book at gig at Mohegan while the momentum is going strong. My aunt hooked up with one of them back in her groupie-phase in the late 60s. She’s single again, so she would buy ticket.
b) (stream-of-consciousness: old albums and because I had pancakes for breakfast) -It also made me think of Patti Page (someone even less people will remember). She now sells singing maple syrup which is really odd but I find it fun to have on hand for when you have guests over to eat pancakes. You might need to get some with all those houseguests... You can order it online at “www.pattipageproducts.com”. When you take the cap off, Patti sings. The syrup is tasty, too.
#5- The scab- that is so damn impressive. Please send more updates on the scab. Have you looked up scabs in Guiness or Ripley’s? You really might have a record going here…
Sending lots of love,
Jess
P.S. Note to Mollie (aka Pinhead)—you forgot to mention that you have an abnormally small-sized head when you described yourself.
Lookit here, Mills - the "It's a small world" song was NOT autobiographical. It was just a change of lyrics to stop you and Frink from singing that irritating song constantly. AND I can't help it if I have a dainty head. You'd never believe me, but my mouth is small too. Dental impressions are always fun - when they try to shove the "adult" sized tray full of glop in my child-sized pie-hole, and it simply won't fit. Now, Kingston trio reunion...I'd be there. That banjo is always a head bangin' instrument. Hence the need to play it in Deliverance. Deb's scab...I think we need to name the thing. Help me out - Any famous movies with union strikes that portray any really famous scabs?
Now, Mills... Seriously... We haven't pranked Deb in a very long time. The Christmas tree in her office in July was the first, then the rubber blood and dagger, then the fake dog poop and vomit that backfired and got Jethro... Don't you think it's about time for a "long-distance" gig?
Love ya Deb.
Watch your back, Mills...
-Mol
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