Monday, June 25, 2007
Wednesday, June 13, 2007
Deb's Update: June 13, 2007 7:45 AM PST
Hi all,
It's been a long time since my last update but I know I have seen lots and lots of you back East during my 12 day visit up (so I apologize if I tell you guys the same things again...). I just have to figure out where to begin since there is so much to tell you guys in terms of how I am doing, how my trip was, how my doctor appointments were, the vaccine trial, etc... Here goes:
My last trip to Cedars-Sinai I definitely learned that you really have to prepare yourself for doctor appointment.... what I mean is that you need to bring a novel with you, show up on time, and know what your medication side effects could be/are! The first trip to my new doctor (Immunologist) was a fairly detailed one and I had to speak with the doctor for quite some time, fill out tons of paperwork which included family history, current medication and every autoimmune symptom known to man (if I had them!). But, since my ANA was high, I had to have a ton of other autoimmune lab tests done. So, the Friday before Memorial Day I was headed back to my Immunologist to discuss the new autoimmune lab results to see if I was okay to go onto the vaccine trial with Dr. Yu.
Boy oh boy, was that a long day... I was asked if I could come to the Immunology doctor appointment about an hour early since he wanted to leave early that day (due to the extended weekend...). I also had an appointment with Dr. Yu, Dr. Chu and Anne (the nurse practitioner) to discuss the vaccine trial that afternoon. So, I knew I'd be there a while and even packed myself a lunch since I know I need to eat these days to keep my weight up! Thankfully I brought the new book that Jana sent me, "It's Okay to Miss the Bed on the First Jump" (it's a book about life lessons that John O'Hurley learned from his dogs) and was able to read about 50 pages while I waited AND waited for my Immunologist appointment! I guess I didn't really need to be there an hour earlier since he actually came in to see me over an hour later! Anyway I guess I should give you the medical info and not the frustration stuff, huh? :-)
The detailed ANA results: (for those of you who want to look up this stuff on-line or who are medically smart...) My ANA Titer was 1:1280 when the normal result is <1:40 class="blsp-spelling-error" id="SPELLING_ERROR_4">RO AB (SS-A)-EIA and ANTI-LA AB (SS-B)-EIA. These are the photosensitivity items... Of course this made me wonder why the heck they're high when I don't seem to have a major sun sensitivity or skin sensitivity. So, the immunologist needed me to tell him that one of the side effects that Bactrim DS (the antibiotic that I take prophylaxis for pneumonia) has is sun sensitivity.... okay, he didn't expect that I'd tell him that, but he doesn't know me :-) Of course when I asked him if the result could actually just be from the Bactrim DS, he said "definitely go on a different antibiotic other than Bactrim...".
I'm guessing that my body just decided that it didn't want me to be eligible for the vaccine trial so it made the photosensitivity autoimmune lab be the one that went up the most! But, the immunologist wrote me a approval type note that said that the vaccine trial benefits could outweigh the risk of any of the strongly or weakly positive ANA results. As you can guess, it wasn't what I needed to allow me to go onto the vaccine trial...
So, on to Dr. Yu's office I went with my Immunologist's "note" so that I could have the approval to go onto the vaccine trial. But, in a nutshell, the IRB wouldn't allow me to go onto the trial due to the high ANA and strongly positive photosensitivity lab results... I just think that there is always a reason for something, so I guess that my body and brain just LOVE that Temodar chemotherapy!!! Dr. Yu also thinks that I am doing so well on the Temodar that I don't absolutely need to stop the chemo which is what I would have had to do if I was on the vaccine trial. One other good way to look at it is that I already have the 6 antigens that they would have boosted in my system with the vaccine... so I am just hoping that they are strong enough to keep that Glioblastoma from coming back. Fingers crossed that my immune system will continue to stay strong.
I sure was ready to start the Temodar again but unfortunately I was going to be taking it when I headed back East... So, On May 31st I landed at the Providence airport and took my last day of Cycle 4 chemo. That kind of felt weird to take a poisonous drug in public so of course I did it in the ladies room behind the closed door ;-) But, I seem to feel pretty good during the actual 5 days of the chemo during a cycle. Interestingly enough, I start work again the day I am starting Cycle 5... That is not a concern for me because I am happy to just get back to work and into a work routine again! Since I am supposed to continue the Temodar for the entire year I need to see if I am able to continue working... my guess is that working will actually be good for me! I will keep you posted on that one...
Right before I headed back East I was able to go to lunch with Radar's trainer (or I should probably call her my trainer!). She was thankfully able to see the Radar that is a goof ball and is back to his usual self. It was good to hear that she noticed a change in him. When she knew him, he was in his stressful/I have to protect my mom state... but now he's himself again... that's CONFIRMED! I'm still going to let him tell me when it's time to get another MRI!
My mom picked me up at the airport on May 31st and took me to Dunkin' Donuts upon my request... Of course I had to wait over an hour to eat and drink my "treats" from Dunkin' Donuts... So, off to a wonderful, organic type grocery store to get me some of the food that I've been eating these days while I waited to eat that chocolate covered donut! I was thankful for both the organic food and the trashy donuts covered with chocolate! The way I see it is... I eat what my body tells me it wants/needs to eat :-)
On June 1st my mom and I went to visit my Memere and Pepere (her mother and father), my cousin Jeanne, Uncle David and Auntie Rita (Jeanne's father and mother), and then my Gram's grave stone. So, it was great to see everyone that day although it sure was hot and humid back in Brockton, MA. The neighborhood that I grew up in sure looked different too.... it's interesting to see things that you haven't seen in over 15 years (I'll leave it at that!). All of the visits were great that day but it was a bit emotional for me to have to see the grave stone with Gram's name on it... but that's what I'm guessing made me decide that she needed to have a pretty garden in front of it! So, my mom and I went to get her some new garden stuff to make her area look pretty... I think that's what I needed to accept Gram's passing on... Believe me, I continue to tell her that she's not seeing me up in heaven any time soon so if she want to see me, she is now able to do it whenever and wherever she wants :-)
On June 2nd I had my family/friend party in Marion, MA. It was a beautiful day and lots and lots of wonderful people there, great food and great location! I will try to download some of my pictures from my trip back East but I haven't done it yet... I expected that I'd be exhausted after that party but I was just so happy to see everyone that I was in Cloud 9 (is that even the right phrase to say...? can I blame that on my brain...?). I stayed at my Dad's and Betty's house that weekend and Jim, Marianne, Augie and Leif spent the next few days doing stuff with me which was great. Brunch on Sunday (June 3rd) at a great yacht club and then on Monday (June 4th) we all went to a Flower/Garden museum in Sandwich, MA but unfortunately it was pouring rain that day (but the boys sure did love the puddles that day!). Sunday night, I was able to head over to Pat, Norma, and Rebecca's house with my Uncle Bruce... that was a nice visit but it was a little comical that Pat still had a very funny Land O' Lake butter 'gift' that I gave her years and years ago... I won't get into that detail, but let me just say this : it was something that I made for her and it shouldn't have been made by a kid as young as I was when I made it for her!!!
June 4th (after the museum) it was a dinner night at my Dad's to see Dan, Mary and Logan since they were on a cruise and unable to attend the June 2nd party... I actually took a little nap that day (I think I remember doing that!) since it was rainy and a good nap day! The next morning, I packed for my next State visit... I was off to CT! My Dad and Betty drove me down to the Manning's house which I stayed at from the 5th through the 8th. Lots and lots of lunch and dinner plans during that CT visit so I can't get into tons of details there but just to say one thing: Thank you guys, and I sure did get to eat at all of the restaurants (Cafe NV, Ocean Pizza, Olio and Broken Yoke) since I moved out to CA !!! Thanks to everyone that took me to the food places that I love :-) Amy M and I also headed to the Red Door Salon and Spa to get our manicures and pedicures so that sure was relaxing for me but very fun for us to chat the whole time. I also got to peak at the garden at my old CT house thanks to Larry and Priscilla (my CT neighbors!). I can't wait to see pictures (that I told Larry he would need to take) when those cottage gardens are in bloom!
Since there was a party going to be happening on June 7th at the clubhouse in the Manning's neighborhood Amy and Brian had lots and lots to do the night of the 6th and the day of the 7th... So, off to Foxwoods Casino Joann and I were on the morning of my birthday to play BINGO! That's right, BINGO!!!!!! Neither of us won, but it's always fun to go to BINGO at a casino... I would highly recommend that for all of you CT folks! Amy wasn't able to make it with us since she was doing all of the setting up for the party that night. Again, what a great party that was thrown for me... Lots and lots of friends were there which was great! It's so nice to see people that have been cheering me on for the last 7 months... again, lots of pictures, so I will hopefully be able to at least post a few pictures (hopefully with my birthday hat on!). Al was able to come to the party too at the time that was perfect for dessert and then clean-up....
Al and I were headed to Delaware from the 8th to the 10th to see Jodi and John (Jodi's new husband!) for their party.... Not such a great drive but thankfully Al did the entire drive both down to DE and back to RI... lots and lots of hours to chat in the car but also lots and lots of hours to be sitting around the George Washington Bridge... I'll just leave it at that! We were able to spend time with Jodi and John on the night of the 8th before the party on the 9th... we knew we wouldn't get to spend a ton of time just talking with them on their party day ;-) But, both Al and I got to know John's family which was great... They all have a good sense of humor like John does so now I don't have to wonder how he got it! I can't wait until Jodi and John move to Houston since they will be close to me out here ;-)
One last family dinner at my Mom's house on June 10th since there were some additional family members that were unable to come to the June 2nd party. It was nice to see everyone there as well and of course my mom made the food that I love of hers: Meatballs AND lasagna! Mom had a cold so I actually stayed at Jim and Marianne's house that night... then it was off the Mom's work so that she could bring me to the airport. It sure was a wonderful trip, but it felt good to head home to CA to sleep in my own bed and to see my own family (Nala, Radar and Joe!)... My apologies if I forgot to tell you guys some things, but as you can see, I sure was busy!
So, now I have to re-group and get ready to head back to work in a few weeks! I will continue to update the blog every week or two when I have some things to tell you guys. Your support and positive outlook is always a good thing :-)
Thank you, Thank you for all you guys have done for me during the past few weeks! Again, sorry for what I may have forgotten to write about (see, this is why I should not wait one month to write a blog update!)...
Love Ya, Debbie
Hi all,
It's been a long time since my last update but I know I have seen lots and lots of you back East during my 12 day visit up (so I apologize if I tell you guys the same things again...). I just have to figure out where to begin since there is so much to tell you guys in terms of how I am doing, how my trip was, how my doctor appointments were, the vaccine trial, etc... Here goes:
My last trip to Cedars-Sinai I definitely learned that you really have to prepare yourself for doctor appointment.... what I mean is that you need to bring a novel with you, show up on time, and know what your medication side effects could be/are! The first trip to my new doctor (Immunologist) was a fairly detailed one and I had to speak with the doctor for quite some time, fill out tons of paperwork which included family history, current medication and every autoimmune symptom known to man (if I had them!). But, since my ANA was high, I had to have a ton of other autoimmune lab tests done. So, the Friday before Memorial Day I was headed back to my Immunologist to discuss the new autoimmune lab results to see if I was okay to go onto the vaccine trial with Dr. Yu.
Boy oh boy, was that a long day... I was asked if I could come to the Immunology doctor appointment about an hour early since he wanted to leave early that day (due to the extended weekend...). I also had an appointment with Dr. Yu, Dr. Chu and Anne (the nurse practitioner) to discuss the vaccine trial that afternoon. So, I knew I'd be there a while and even packed myself a lunch since I know I need to eat these days to keep my weight up! Thankfully I brought the new book that Jana sent me, "It's Okay to Miss the Bed on the First Jump" (it's a book about life lessons that John O'Hurley learned from his dogs) and was able to read about 50 pages while I waited AND waited for my Immunologist appointment! I guess I didn't really need to be there an hour earlier since he actually came in to see me over an hour later! Anyway I guess I should give you the medical info and not the frustration stuff, huh? :-)
The detailed ANA results: (for those of you who want to look up this stuff on-line or who are medically smart...) My ANA Titer was 1:1280 when the normal result is <1:40 class="blsp-spelling-error" id="SPELLING_ERROR_4">RO AB (SS-A)-EIA and ANTI-LA AB (SS-B)-EIA. These are the photosensitivity items... Of course this made me wonder why the heck they're high when I don't seem to have a major sun sensitivity or skin sensitivity. So, the immunologist needed me to tell him that one of the side effects that Bactrim DS (the antibiotic that I take prophylaxis for pneumonia) has is sun sensitivity.... okay, he didn't expect that I'd tell him that, but he doesn't know me :-) Of course when I asked him if the result could actually just be from the Bactrim DS, he said "definitely go on a different antibiotic other than Bactrim...".
I'm guessing that my body just decided that it didn't want me to be eligible for the vaccine trial so it made the photosensitivity autoimmune lab be the one that went up the most! But, the immunologist wrote me a approval type note that said that the vaccine trial benefits could outweigh the risk of any of the strongly or weakly positive ANA results. As you can guess, it wasn't what I needed to allow me to go onto the vaccine trial...
So, on to Dr. Yu's office I went with my Immunologist's "note" so that I could have the approval to go onto the vaccine trial. But, in a nutshell, the IRB wouldn't allow me to go onto the trial due to the high ANA and strongly positive photosensitivity lab results... I just think that there is always a reason for something, so I guess that my body and brain just LOVE that Temodar chemotherapy!!! Dr. Yu also thinks that I am doing so well on the Temodar that I don't absolutely need to stop the chemo which is what I would have had to do if I was on the vaccine trial. One other good way to look at it is that I already have the 6 antigens that they would have boosted in my system with the vaccine... so I am just hoping that they are strong enough to keep that Glioblastoma from coming back. Fingers crossed that my immune system will continue to stay strong.
I sure was ready to start the Temodar again but unfortunately I was going to be taking it when I headed back East... So, On May 31st I landed at the Providence airport and took my last day of Cycle 4 chemo. That kind of felt weird to take a poisonous drug in public so of course I did it in the ladies room behind the closed door ;-) But, I seem to feel pretty good during the actual 5 days of the chemo during a cycle. Interestingly enough, I start work again the day I am starting Cycle 5... That is not a concern for me because I am happy to just get back to work and into a work routine again! Since I am supposed to continue the Temodar for the entire year I need to see if I am able to continue working... my guess is that working will actually be good for me! I will keep you posted on that one...
Right before I headed back East I was able to go to lunch with Radar's trainer (or I should probably call her my trainer!). She was thankfully able to see the Radar that is a goof ball and is back to his usual self. It was good to hear that she noticed a change in him. When she knew him, he was in his stressful/I have to protect my mom state... but now he's himself again... that's CONFIRMED! I'm still going to let him tell me when it's time to get another MRI!
My mom picked me up at the airport on May 31st and took me to Dunkin' Donuts upon my request... Of course I had to wait over an hour to eat and drink my "treats" from Dunkin' Donuts... So, off to a wonderful, organic type grocery store to get me some of the food that I've been eating these days while I waited to eat that chocolate covered donut! I was thankful for both the organic food and the trashy donuts covered with chocolate! The way I see it is... I eat what my body tells me it wants/needs to eat :-)
On June 1st my mom and I went to visit my Memere and Pepere (her mother and father), my cousin Jeanne, Uncle David and Auntie Rita (Jeanne's father and mother), and then my Gram's grave stone. So, it was great to see everyone that day although it sure was hot and humid back in Brockton, MA. The neighborhood that I grew up in sure looked different too.... it's interesting to see things that you haven't seen in over 15 years (I'll leave it at that!). All of the visits were great that day but it was a bit emotional for me to have to see the grave stone with Gram's name on it... but that's what I'm guessing made me decide that she needed to have a pretty garden in front of it! So, my mom and I went to get her some new garden stuff to make her area look pretty... I think that's what I needed to accept Gram's passing on... Believe me, I continue to tell her that she's not seeing me up in heaven any time soon so if she want to see me, she is now able to do it whenever and wherever she wants :-)
On June 2nd I had my family/friend party in Marion, MA. It was a beautiful day and lots and lots of wonderful people there, great food and great location! I will try to download some of my pictures from my trip back East but I haven't done it yet... I expected that I'd be exhausted after that party but I was just so happy to see everyone that I was in Cloud 9 (is that even the right phrase to say...? can I blame that on my brain...?). I stayed at my Dad's and Betty's house that weekend and Jim, Marianne, Augie and Leif spent the next few days doing stuff with me which was great. Brunch on Sunday (June 3rd) at a great yacht club and then on Monday (June 4th) we all went to a Flower/Garden museum in Sandwich, MA but unfortunately it was pouring rain that day (but the boys sure did love the puddles that day!). Sunday night, I was able to head over to Pat, Norma, and Rebecca's house with my Uncle Bruce... that was a nice visit but it was a little comical that Pat still had a very funny Land O' Lake butter 'gift' that I gave her years and years ago... I won't get into that detail, but let me just say this : it was something that I made for her and it shouldn't have been made by a kid as young as I was when I made it for her!!!
June 4th (after the museum) it was a dinner night at my Dad's to see Dan, Mary and Logan since they were on a cruise and unable to attend the June 2nd party... I actually took a little nap that day (I think I remember doing that!) since it was rainy and a good nap day! The next morning, I packed for my next State visit... I was off to CT! My Dad and Betty drove me down to the Manning's house which I stayed at from the 5th through the 8th. Lots and lots of lunch and dinner plans during that CT visit so I can't get into tons of details there but just to say one thing: Thank you guys, and I sure did get to eat at all of the restaurants (Cafe NV, Ocean Pizza, Olio and Broken Yoke) since I moved out to CA !!! Thanks to everyone that took me to the food places that I love :-) Amy M and I also headed to the Red Door Salon and Spa to get our manicures and pedicures so that sure was relaxing for me but very fun for us to chat the whole time. I also got to peak at the garden at my old CT house thanks to Larry and Priscilla (my CT neighbors!). I can't wait to see pictures (that I told Larry he would need to take) when those cottage gardens are in bloom!
Since there was a party going to be happening on June 7th at the clubhouse in the Manning's neighborhood Amy and Brian had lots and lots to do the night of the 6th and the day of the 7th... So, off to Foxwoods Casino Joann and I were on the morning of my birthday to play BINGO! That's right, BINGO!!!!!! Neither of us won, but it's always fun to go to BINGO at a casino... I would highly recommend that for all of you CT folks! Amy wasn't able to make it with us since she was doing all of the setting up for the party that night. Again, what a great party that was thrown for me... Lots and lots of friends were there which was great! It's so nice to see people that have been cheering me on for the last 7 months... again, lots of pictures, so I will hopefully be able to at least post a few pictures (hopefully with my birthday hat on!). Al was able to come to the party too at the time that was perfect for dessert and then clean-up....
Al and I were headed to Delaware from the 8th to the 10th to see Jodi and John (Jodi's new husband!) for their party.... Not such a great drive but thankfully Al did the entire drive both down to DE and back to RI... lots and lots of hours to chat in the car but also lots and lots of hours to be sitting around the George Washington Bridge... I'll just leave it at that! We were able to spend time with Jodi and John on the night of the 8th before the party on the 9th... we knew we wouldn't get to spend a ton of time just talking with them on their party day ;-) But, both Al and I got to know John's family which was great... They all have a good sense of humor like John does so now I don't have to wonder how he got it! I can't wait until Jodi and John move to Houston since they will be close to me out here ;-)
One last family dinner at my Mom's house on June 10th since there were some additional family members that were unable to come to the June 2nd party. It was nice to see everyone there as well and of course my mom made the food that I love of hers: Meatballs AND lasagna! Mom had a cold so I actually stayed at Jim and Marianne's house that night... then it was off the Mom's work so that she could bring me to the airport. It sure was a wonderful trip, but it felt good to head home to CA to sleep in my own bed and to see my own family (Nala, Radar and Joe!)... My apologies if I forgot to tell you guys some things, but as you can see, I sure was busy!
So, now I have to re-group and get ready to head back to work in a few weeks! I will continue to update the blog every week or two when I have some things to tell you guys. Your support and positive outlook is always a good thing :-)
Thank you, Thank you for all you guys have done for me during the past few weeks! Again, sorry for what I may have forgotten to write about (see, this is why I should not wait one month to write a blog update!)...
Love Ya, Debbie
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