Deb's Update: February 27, 2007 7:30 AM PST
Okay guys, sorry for the delay in the update! Today is Day 1 for Cycle 1... yup, for today through Saturday I am taking more than 2 times the amount of chemo that I was taking during the radiation. Of course I have no idea how it will go since I just took it a minute or two ago! I figure that I may as well sit still, write emails or blog updates since I cannot eat for an hour or so... It's my relaxing time, look at it that way :-)
Interestingly enough, I had to take many, many more of my Temodar capsules than I used to take a month ago... thank God I had some left over because I wasn't taking them on the weekends. In a nutshell, okay, maybe NOT a nutshell, I haven't received the higher dose capsules yet!!! Yup, you guessed it, it's an ExpressScripts/Curascripts issue! I'll try to just tell you a quick summary of the last two weeks dealing with them... My med onc doctor sent in the Rxs to ExpressScripts two weeks ago so that I would have plenty of time to get the Temodar and Kytril before I had to take it. After all, I knew I needed the anti-nausea pills and a much higher dose..... So, I decided to follow my 'order' on the Express Scripts website. Huh, I only saw the Kytril. I know I love that and NEED that, but I figured I would call them (about a week before I needed the meds) to see if the Temodar was just not listed on-line. Talked to two people there a few days apart and the second person finally told me that I should have had my doc fax that to CuraScripts instead of ExpressScripts. Did I know that? NOPE. Did they ever tell me that the first day I talked to them because it was missing on the website? NOPE.
Okay, sorry for this long story, but here is the rest of it. I finally decided to talk to CuraScripts to see when I would get that Temodar that I so desperately wanted.... imagine that!? They had a week to go before I needed my new Temodar capsules. BUT, they said they had to ship by Thursday of last week so that I could have it in time to take it on Monday (of course this was not the real dosing date, but I figured I may get it on time if I told them that!). So, they of course had my doctor's office fax it to them again (on last Tuesday) and AGAIN on Thursday since they didn't get it for some reason. Guess what? THEY NEVER GOT IT according to them!!! I had a major, major drama call on Friday night since I didn't get the Temodar. I think I may be able to go into acting, ask my mom, she'll tell you! Okay, so in a nutshell, I still don't have the Temodar capsules but they should be here today by noon time per CuraScripts. I am guessing that I will have to make a call this afternoon.... stay tuned.
So, as you can see, there are lots of things that are keeping my brain working: ExpressScripts/Curascripts (in case you all need to know some day, it's the SAME company), the tons and tons of short term and long term disability details, and of course the Insurance company's 'stalling' and not paying any of the medical bills yet. Fun, isn't it? It's a busy, busy thing to keep up on.... no wonder I have to stay out on disability until I get this all running/functioning smoothly! Stay tuned.
Okay, let's talk about something positive........ I still have a scab!!!!!!!!! I'm hoping that it stays put at least until after I go to Cedars-Sinai to see Dr. Yu (my surgeon) on March 6th... I hope you guys keep your fingers crossed on that one and add that to your blessing if you don't mind :-)
Another positive thing is that my radiation oncologist thinks my hair will start to grow back in a month or so!!! YIPPEE.... I can handle another 4 weeks for the bald spots! I had my follow-up appointment yesterday and he was so impressed at how good the skin looked and since the redness and colored skin has vanished, he said the hair should grow back sooner than usual. I guess that some people's skin looks damaged for longer.... I'm excited that mine is doing great! I am wondering if it's because I followed the Hydrocortisone rules majorly (you can ask all my poor friends who were here and had to put it on my scalp while the hair was falling off...... they had to rub that stuff on my scalp 2 times per day...YUCK!). But, I do follow the rules when I am told what I should or shouldn't do :-) I think that's just like my Gram since that is what she did during her entire life... that's why she lived to be 94 years old! I'm sure she's happy to see me following the rules!!!
The pets are all happy, happy, happy to have their mom home and doing well! Of course my Radar decides that he needs to sniff the left side of my head (where my scar is) and he just does it quick and then runs out of the room to play! I'm guessing that he is just making sure that he doesn't smell the tumor anymore but he has to check it out. So, if he starts licking the area and starts behaving protective I am definitely going to get an updated MRI! One of my Briard friends said that no wonder his name is perfect: RADAR...He can probably find anything and everything!!! Of course he had a slightly tough few days after being home for a week (vomiting and diarrhea). But, we went to the vet, he's on the mend and the vet's guess is that he may have had a stomach virus from AZ and it was dormant until he came home: different food, different yard, different exercise, etc... He's okay now and is loving the rice, chicken, yogurt meals, but that'll change shortly...
I am doing just as much cooking for his meals as I am my own! Speaking of cooking, Margaret Rushing and I have been doing a lot of cooking together. She is helping me cook majorly healthy meals that will be good for my immune system. Thankfully Karin G. had sent me a wonderful book that has recipes in it so stay tuned if my immune system continues to be great and continues to make me feel great. Again, I'm following Gram's rules: 'you need to pay attention to the vitamins and foods that you need to eat when it will be good for your health'... :-)
Obviously my concern is losing weight so I will be paying close attention to that since I really don't want to be any skinnier as you can imagine! I did get a nutritionist name from my med onc doctor so I will probably go and see them in a month or so.... JUST to make sure I'm eating right!
Mom and her friend Helen were here this past weekend. They were on their way to Hawaii and stayed for a day and a half before heading to the island. It was a great visit and of course my mom had to do some home improvement stuff: she painted the vanity in the bathroom! She's unbelievable... she loves that stuff. I'm guessing that she is who I got my fun home improvement interest from! Of course she needed to check out the Doggie Dooley system to make sure I was using it "correctly". It's a majorly interesting item, I'll just keep it at that :-) If you're a dog person and want to hear more about it, just call me or send me an email... I definitely don't need to get into those details for everyone! Just one thing I'll say is that it's a good NOT SMELLY thing!!! Mom and Helen will be back for a day and a half on their way home from HI also so stay tuned.... I'm guessing that my vanity will be finished (painting) after their next visit! Oh, and another thing: Helen likes the Element!.... see, once you ride in it, you'd like it too :-)
Okay, it's been an hour and a half since I took the chemo so its time to eat! I am feeling good even though I had a much higher dose this morning! YIPPEE!!! Maybe it was fun for me to write the blog update and my body didn't even think about the high Temodar dose! I'll try to write as the week goes on just to let you guys know how it is going during Cycle 1!
Love Ya,
Debbie
Tuesday, February 27, 2007
Saturday, February 17, 2007
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
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
Thursday, February 08, 2007
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
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
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