Deb’s Update: February 6, 2007 10 AM PST
Hi all,
Just wanted to give you another update but I won't be writing it as a song, okay Mollie!?
It's been a full week since my last chemo/radiation treatment. I still feel the same and unfortunately, it's still a bit woozy in the morning. I don't do too much in the morning since my stomach is still a bit unsure of what it wants to do! I haven't actually vomited recently but I am definitely controlling what I am allowing myself to eat in the morning.
I'm still actually losing some hair where they radiated which I guess will continue to happen for a few weeks... thank God I had tons of hair before. If the wind blows people are definitely able to see the bald areas... I am still hopeful that I won't need a wig, but I guess I have to let the stuff that is still on my scalp grow a bit just to cover the bald areas.
The swelling on my left side of my temple area is definitely getting better. I was told by my radiation oncologist that it would take several weeks to get rid of the swelling. I can't wait for that... I will be excited to finally see my left temple! You'll never guess what else I still have on my head: my scab!!! It's been 3 months and I still have about an inch long scab at the end of the scar (on the top of my head) which continues to fascinate me... I'm hoping I'm going to continue to set records like this one!
I was told that the vaccine study ICD is still not approved so I can't screen yet. I got a message from Dr. Yu & Anne to tell me that they hope to be able to see me on the 16th of February for screening. Stay tuned on that one. I will be moving forward on my first cycle of chemotherapy so hopefully we can all figure out how to get the vaccine stuff started soon as well. I believe that my chemo will either be the last week of February or the first week of March.
Today I will be getting labs done and will have my medical oncologist order the Temodar and have it shipped to my house. The new prescription insurance stuff that Amgen has is different so it's better to get the prescription drugs ordered earlier (done via fax or US mail!). If I don't fax or mail the Rx in, I will have to pay more because I will be getting it at a local pharmacy.... so clearly I would rather "order it". I've got the time on this one!!!
I'm still dealing with understanding the STD and LTD stuff (Short Term and Long Term Disability). I have finally decided that I will discuss the questions/answers on the phone but will confirm them on an email. It just seems like there are more people that I need to talk to each with different skills and knowledge... so, now I'll get it all written down and I will know it is a right answer rather than just a guess (on their part).
I've also recently been being called by doctor's offices or hospitals since none of them have been paid by my insurance company. It's been 3 months so they're starting to involve me.... another thing that I have to deal with! Fun, huh? So, I will be calling my insurance company today just to discuss the 'pre-existing condition' details with them (there obviously were not any pre-existing conditions for me). I'm guessing that they do not know that Glioblastoma grows really fast!? Or, they just want to stall so they don't have to pay right away... stay tuned on that one!
Okay, so you've heard enough about all the paperwork stuff!!! The rest of Amy and Meredith's visit was great. We of course had to do Disneyland since both Meredith and I were excited :-) Luckily, it was a Fairy Princess day (I can't remember if that is what they actually called it!) so Meredith was able to meet several Princess that she loved. We only went on a few rides because she was just as happy to walk around to see Mickey or other characters so she could get her picture taken! They left on Friday morning but Meredith thought she should stay another day so she could ride Slim Shady again (the neighbor's horse)! She was definitely getting into the farm thing!!! The neighbors were so nice because they gave Meredith a pink, little, stuffed animal horse... she was excited definitely!
On Friday, Antonietta and Paul (her husband) came with Oscar (the Cairn Terrier puppy) for a visit. What a great weekend. The weather was wonderful, Sunday was a Superbowl Sunday and Nala got to play with a doggie friend! Paul of course decided that he would help with something: he re-caulked the bathtub/shower area which was an item on the list. He also decided that he would be the one that could get me a Starbucks coffee while he was out and about! He was loving Thousand Oaks I think :-) Of course Ant cooked a wonderful lasagna which was very tasty... she made her own Italian sauce and so the whole thing was a personal Italian meal! YUM!!!
Ant and I also decided to make some 7 layer dip and Milky Way cake for the Superbowl Sunday BBQ that my neighbors invited us to go to... basically it was just the neighbors next door, me, Ant and Paul! So, we had a bit too much food, but it was tasty. I think that Ant is also hooked on the Ray's Bagel that she had for her breakfasts!
My mom will be here on Friday and we are definitely headed out to AZ to get Radar!!!!! I am sooo excited to get him home. I'm majorly missing him... I am so missing Radar that I decided that I needed to help Ant and Paul train their male puppy- Oscar is as energetic as Radar always was at that age! That was a fun thing for me to do... Oscar sure is a cute puppy with tons of energy. I just figured out that I think that the house may have termites (I saw the wood/dust pieces on the dining room floor this morning)! So, I have to look at the termite inspector's report to see how this will all get fixed... I believe that it's paid for either by them or by an insurance company for a year ... stay tuned.
That's it for now. I am going to try to do some things around the house little by little the next few days just to see how things go when I'm here alone. Stay tuned...
Thanks again for all of your comments... I obviously log onto the blog site several times a day to see what has been said! It makes me smile, laugh and be happy just to hear everyone give me support!
Love Ya!
Debbie
10 comments:
Sounds like you are keeping a balance of work and fun. Glad to hear you are getting out to Disney and that you will be headed to AZ this weekend. We can't wait to hear how that goes.
I smiled at your very clear clarification of the STD / LTD lingo..... Like me, you are a pro at attention to detail. If you had not provided clarification, unpleasant rumors could have been started, ya know!! You are pretty smart.....but we all knew that already.
Don't worry about your hair. Remember, it's just hair. Hats could be fashionable, ya know....even in sunny CA. And if you had to resort to wigs, there could be some fun aspects to that... it will be Halloween all the time! Ever thought of going blonde? Think of the many creative options......plus the low maintenance benefit.
Holding you always in the light of the Boston Beacon......
Bea
It's been a full week since my last chemo/radiation treatment....and what, these are my sins???? I swear that this sentence made me think of confession, which is highly ironic for a lapsed Catholic such as myself!
Hats are definitely the way to go -how about one with the same sentiment as on that tee shirt I sent you? They have basecall caps with it as well - not sure if they have it in pink, but I shall check it out for ya.
Talk with Myra about termites - you may remember how the house she bought 'came with' at no extra cost -such a deal, no?
I think we alert the media about the scab - or at least the Guiness folks. However, are you sure you want that distinction or the sure moniker - Scab Woman? After all, you do NOT have Hansen's disease(aka leprosy).
Tell that stupid IRB to get off their collective asses and get that consent approved already - what is the holdup - don't they know that clinical research cannot wait on something as mundane as informed consent (watch all the ICGH/GCP devotees out there have a conniption over that).
Have a safe and fun trip to AZ for your Radar detector - what a reunion that will be for all of you.
Best Always,
Barbara
Hi Deb
Just wanted to thankyou for the wonderfull time me, Paul and Oscar had visiting you last weekend. Oscar love you and Nala, and he was so tired on the drive home and on tuesday he kind of slept all day.
I think you should post that picture of Nala lounging on the sofa. She has a hard life loving you and doing all those tricks for her treats.
Hope you have a great trip picking up Radar in AZ.
And your right I'm hooked on those Ray's bagels, can't wait to buy them myself.
Talk to you soon
Ant
Well, it sounds like you're keeping yourself busy. Don't forget to rest in order to keep your energy and strength up. Hopefully your trip to AZ to get Radar was good and you're now back home with all your "kids".
Maybe your cooking friends could start an online catering co. so that the rest of us who are reading about all the tasty treats they are making you can have the chance to enjoy them too. :)
Keep us updated on everything going on. I check every day to see if you've written anything new. I'm looking forward to the next entry. Keep strong!!!
Love ya!
Donna:)
Hi Deb:
If you lose too much hair, you can always wear a yellow sweater on your head. For everyone who has no idea what I am talking about, when Deb and I were little, our mom always kept our hair short. Deb and I wanted long hair more than anything so we pretended by buttoning sweaters to our head. We always fought over the yellow one.
Hope your trip to Arizona was uneventful and that you are reunited with Radar by the time you read this comment. Make sure to post a picture soon (after you have the chance to brush out his knots, of course).
Miss you and love you,
Amy
Oh my gosh- I cannot believe you still have that scab! Leave it to you Deb to be an over achiever - even in the scab department!
Sorry to hear about your termites! But I keep hearing these great radio ads where only orange oil is used to kill them - all that's left is the smell of orange oil for a couple days - every termite and egg is killed - (better orange oil smell than pine - right? :)
I miss not talking with you in person - but we've obviously all been busy - maybe not as much as those that have stayed with you :) . I hope you'll be back here at Amgen soon - but in the meantime - I'm off to Stephanie this Wed. and if you haven't seen her, I'll give her the good news updates!!
Good luck with your vaccine trial and hope to see you soon,
Hillary
Deb,
Teresa (Wolf) Barros gave me the link to your blog and I wanted to be in touch with you. I have gone through some very similar things since Thanksgiving and wanted to get in touch with you to be able to provide some support and know that you are not alone! . My personal email is jmault@cox.net Feel free to email me when you are feeling up to it.
I hope you had a good weekend, Jenn Mault
We did it! We went to Ajo Arizona and got Radar on Saturday... Boy, it sure is amazing how happy Radar and his mom are now that he is home... you'll hear more about the "movie" called Runaway Briard on the next blog update!
Wow - congrats on bringin your boy home. I cannot wait to hear the tale of the tail!
Barbara
So I notice you're controlling WHAT you allow yourself to eat in the morning, but no mention of HOW MUCH you allow yourself to eat. Are you sure those are termites in the house, or is the sawdust just a something that escaped your napkin? Having been outeaten by you on numerous occasions, I won't believe the termite story until I see them under the microscope. I'm also starting to wonder if you should scrap the whole concept of hair, and just concentrate on growing that scab. If the thing is so darned determined, work with it, not against it. You DO live in Beverly Hills. You COULD get a part in the next Star Trek movie. If people stare or ask pointless questions, just have some of your Amy papparazzi smugly respond that you're "in character".
And listen here, young lady - All this fancy talk you're doing might trick your family, but you're not fooling me one bit. Trafficking in drugs through the mail, practically bragging about your STD's, and not paying your medical bills. You'd better straighten up, remember your roots, and stop living this California high life. Your momma raised you better.
So, let's hear all about: "The Great Briard Escape" - "Raising fur in Arizona", "Mom, I got a hairball but what happened to YOU"
Can't wait.
Love ya man!
-Mol
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