Tuesday, September 25, 2007

Deb's Photo Update: September 25th, 2007

Top Ten Things We Learned about Colon Cleansing
10) You can always eat Bliss Balls...
9) Men need to wear maxi pads too sometimes...
8) Don't always assume that a fart is clean...
7) Sesame oil is not only used for eating...
6) We may be on the web cam from Dr. Simon's office for our colon cleansing...(let's hope not!)
5) Don't ever sit on a stained chair in the meditation room...
4) You can't meditate or relax while getting "cleansed"...
3) We learned for the first time that we had two sphincters...
2) You are what you eat...
1) And the number one reason is... it feels so good to get it all out!








Tuesday, September 18, 2007

Deb’s Update: September 17, 2007 8:30 PM PST

Well guys, here is the latest MRI update.

This is my month 10 MRI and it was the first MRI that I had done at UCLA. There is one bit of uncertainty: it wasn't 100% perfect. There seemed to be two <1mm (pin-head sized) dots in the left and right sides of my frontal lobe. Since the MRI done at UCLA seems to have more 'cuts' than the Cedars-Sinai MRI they could have located a radiation artifact that was there a while ago but was not seen on the last C-S MRI. That is one option, but the other two options could be a fluke, or disease progression. Let's hope it's option one or two, not three.

Therefore, I will be having another MRI 4 weeks from today (October 15th) to see if these pin-head sized dots will grow. So, keep your thoughts positive!!! No growth in 4 weeks will be a big relief...

Chemo will be delayed a few days as well since the UCLA folks would like to see my ANC go up a bit... I'm hovering around 1500 which isn't horrible, but they just want to see if my nadir on my blood counts is longer than they expect. The day for the standard nadir is Day 21 and my Day 21 was better than today (Day 28).... so, I could just have a nadir that goes much longer. CBC labs in two days to see if the counts go up or go down even further.

So, I will be having UCLA follow me a little closer. I will most likely have them follow my labs a lot more than my medical oncologist follows them since they see more GBM patients than my med onc doc sees.

No new updates on Amgen either but we should know more (job wise) within the next 4 weeks too... huh, don't you think it's definitely time to meditate!? I need it more at this point, so going to the Chopra center when I did was what I needed!!! So, stay tuned, you will still get some photos and the top 10 list...

Keep your thoughts positive and I need to stay in those prayers!

Love ya,
Debbie

Wednesday, September 12, 2007

Deb’s Update: September 12, 2007

Hi all…

Lots and lots to talk about on this blog update!

I’ll start out with the GBM stuff and then of course I’ll tell you about the fun stuff I’ve done since my last posting…

I have decided to go to UCLA for my MRIs and will follow their calendar schedule for my treatment related stuff. It feels right to move on to UCLA’s neuro-oncology department instead of staying at Cedars-Sinai for my MRIs. I have also decided to continue to see Dr. Kaul (oncologist here in Thousand Oaks) for my labs and physical exams. Of course I am following the UCLA guidance since they see more GBM patients than most oncologists do. Dr. Kaul laughs at me because I know what I need to do in terms of labs, physical exams and that sort of thing! So, she usually asks me “what’s next, Debbie?”…

So, I have changed my chemo dosing days from Monday through Friday to Tuesday through Saturday. This is just so I can follow the rules of what cycle day blood work needs to be done (Day 21 and 28) and also what cycle day does my MRI need to be done (Day 28/every 8 weeks). Basically, most everything is done on Mondays in terms of labs and MRIs. So, there’s my next point: My 10 month MRI will be done this Monday, Sept 17th!!! Please wish me luck, continue to pray and think positive thoughts for me, etc… I greatly appreciate the continued support that I have from all of you.

So, I’m done with Cycle 7 and I’m starting Cycle 8 next Tuesday (Sept. 18th)… I guess I only have 21 more cycles to go, huh? Lots of cycles if I follow the 2 year plan which I am planning on doing. Cycle 7 finished during Jodi’s visit to me. What a trooper she is to come and see me while I’m on chemo, huh? But hey, it’s not as bad as it sounds… we did all the usual fun things that we did every time we would visit one another (when she was in Delaware and I was in Connecticut). One exiting thing that I was able to do was to give her the wedding gift: the quilt that I made for her and John… You guys all know that I love to quilt… but I’m usually somewhat emotional every time I give those gifts to people. I get so happy to see people like their Debbie quilts so I sure was happy to see Jodi liking her gift! Hopefully John liked it to J Maybe I’ll post a picture of that quilt, what do you think?

Jodi was also able to shop in the D. Reardon boutique/closet for clothes! I’m sure that Joann can relate to that since her sister used to wear lots of D. Reardon clothing items! Good thing that Jodi brought an empty suitcase since we sure did fill it up… Of course it’s a little bit of a bummer to give away clothes that I love but I have no choice since my clothing size is down two sizes since my muscular weight lifting butt is much smaller!!! (I hope you’re not thinking about colon cleansing yet… I’ll get to that point in a bit!) It is always nice to give it to people that appreciate it. I decided to even give lots of things to the Salvation Army but I told my cleaning lady that she could peek through the 12 to 15 bags of clothes, old shoes, house stuff, etc… before the Salvation Army folks picked up the bags. Low and behold, she took lots of it! Salvation Army was the only one that didn’t get lots of stuff from the D. Reardon loot!

Jodi’s husband John helped us deal with the antibiotic stuff that I’ve been going through. Not sure you remember or not, but I should be on some antibiotic prophylactically so I do not get pneumonia (a common side effect of my chemo). But, I have been off an antibiotic since I went back East so it was time to make sure I get back onto SOMETHING! John is into the infectious disease stuff right now and is doing a fellowship in Houston at M.D. Anderson Cancer Center… so, he was very skilled in giving us info as to what drugs I could go on. It all worked out and I am now taking the liquid version of Mepron since no pharmacy or ExpressScripts had that capsule/tablet… go figure, huh? It’s not so yummy tasting, but I take it daily!

No major updates on the status of my job here at Amgen. We have been told that we would know more in terms of our jobs (titles, roles and responsibilities, teams/dept) by mid October. So, stay tuned on that one… my gut tells me that my job should be okay, but I will definitely let you know if I need you to look for a job for me!

Of course there are lots to tell you in terms of the Deepak Chopra Center “Soul of Healing” event that I went to with Ant and Paul. Let me start by saying that I am so thankful for the gifts they gave me… I guess they knew I needed it J. In addition to paying for me to go to the event with them, Ant was wise enough to get both Paul and I some thick and comfy yoga mats, yoga mat bags, journals, pens, book stuff, etc… Definitely 100% appreciated, right Paul!

Before heading down to Carlsbad for the Soul of Healing, we all went to the Cesar Milan (Dog Whisperer) seminar at the Thousand Oaks Civic Arts Center. That was basically just an interesting way to train and control your dogs whether they are aggressive, shy, or just goof balls! I will just tell you that the little “pppssshhhht” sound along with a calm tap on the butt, touch of the neck or holding on the floor is working! I’ll leave it at that. It’s all about exercising the dogs first, reprimanding second (not sure I’m using the right word here) and affection third. None of Cesar’s advice was about being mean to your dog. So for you that could be worried about the reprimanding, it’s about making them work for things in addition to correcting their errors! I have to say that I am just about the Pack Leader now! I always was with Nala but was not with Radar. He is definitely still attempting stuff every now and then, but he has started to realize I’m the leader! Enough about that… I will still eventually get my pictures of their latest trick posted here once I have time to download them…

Okay, back to Deepak Chopra. I just am not sure where to start: Basti, eating, lectures, massages, yoga… I am going back and forth on whether I should just sum it up in a “top ten reasons to enjoy the Soul of Healing”, but I may just consider posting the “top ten reasons to enjoy your Basti” instead… you guys should look that one up! I am working on a top ten list with Ant and Paul so that will most likely be posted later. I will also be getting the photos from Ant and Paul so maybe we’ll be able to put pictures with the top ten reasons to enjoy _________!

It was somewhat of an emotional week but not in a bad way. Monday started emotionally with me when I had to talk to Dr. David Simon (if you don’t know him, you can look him up on the Deepak Chopra website… he’s impressive) about my medical concerns. Let me just say this… it started with me balling my eyes out when I was asked about when and how I got diagnosed. And then once he gave me a tissue (or two!) I was able to re-group and tell him lots of details that he made some notes about. He did a physical exam and personality exam basically and he had one major recommendation: MEDITATE, MEDITATE, MEDITATE! He was not as concerned with my eating, or my exercise, or my job stuff, but he sure did ask me lots of questions like “do you like your job?”, “do you like the people you work with?”, “do you have lots of friends?”, “do you have support?” “do you have regular bowel movements?”. Of course he liked that all of my answers were YES! I won’t get into major details about our ayurveda stuff, but it’s all about body type, personality, energy, etc. If you care, I’m a Vata dosha… here’s some new homework for you Mollie!

It was confirmed that I needed to slow down and meditate when I asked Dr. Simon “can I meditate when walking the dogs?”… That’s when he confirmed that my main thing I should learn this whole week is the importance of meditating when you’re a Vata!!!! So far, so good… I do it twice a day actually (half hour in the morning before work and a half hour after work). It hasn’t seemed to slow me down or to have me waste any time to do things, so I’ll take it!

During the Chopra Center week, we all had to meditate at least twice per day (sometimes 3 to 4 times!), do yoga at least once per day (although some people avoided that!), eat right, get our basti Tuesday through Friday, and get daily massages. Not bad, huh? Lots of stuff that is relaxing. I got addicted to the massages even though I seemed to have gotten bruised a few times. Each day the massages were different which was kind of cool, but I’m sure you can realize that you’ll always have a favorite massage and masseuse!

Ant, Paul and I were all very addicted to the yoga classes and tried to do it twice per day. Sometimes we had to skip the night yoga class for our Basti or our massage that was at the end of the 12 hour day. In the middle of each day was a lecture by Deepak and Dr. Simon: Deepak did Monday and Tuesday and Dr. Simon did Wednesday, Thursday and Friday. Of course Deepak liked to talk about quantum physics since he wanted to provoke our minds… or wants us to read his next book which will be called The Third Jesus or something like that. Dr. Simon talked a lot about eating, behavior, imbalance in our lives, meditating, etc… Stuff that I needed to learn about! I’m sure I’m forgetting some of the topics, but I just paid the most attention to stuff I wanted to learn about J

Now, the BASTI!!! Basically, it was not as bad as you all may have thought. Basti = enema with herbs and oils… I don’t have to get into major details about what basti is like since it will probably be interesting on the Top Ten list that I will be working on with Ant and Paul. I’ll just leave it at that.

So, that’s it for now… I’ve been writing way too long here so I have to actually get some house stuff, dog stuff done! If I have forgotten anything and you have questions, just ask on the comment section as I still love to read your comments!

Deep thoughts and prayers for my Monday MRI!!

Love you guys!
Debbie