Well unfortunately today brought the first bit of slightly disappointing news for a while. (Though mind you it wasn't that bad!). I went for my normal two week blood tests and found out that my WBC's had dipped again back down to 2.7 (from 3.4) and my neutrophils (the super important disease fighting parts of your WBC's) slipped down to the "critical" level of 1.00 (the lowest they've ever been!). Needless to say I am a bit dismayed by the recent rebelling of my blood cells - how dare they plot against me! :) I guess in part I feel responsible as I've been a little less anal and precise about my diet these days and this is serving as a kick in the butt to get back on the hard core raw bandwagon. I was hoping that the magical sauna would do the trick again and so went last night to my Dr.'s for one, but apparently to no real avail -- although like my mom said perhaps my levels would have been even more supressed had I not gone! Touche mom.
So what's next you ask? (as I know you're all dying to know about my white blood cells) Closer followup is the next step, I have to return for another blood test on Monday morning and have set up an appt for a shot of Neulasta (a white blood cell superhero that helps regenerate your disease fighting cells during chemo) in the case that my levels drop anymore. However, in the meanwhile (between today and Monday) the plan is to try and do everything I can to get my immune system to kick it up a notch --- i.e. lots of raw food, no red wine ( booo ) and plenty of rest (something I am notoriously bad at getting!!!!). I'm hoping if I do that that my levels will at least remain stable so that I do not have to get the injection or take a break from the chemo. I'm also thinking that maybe I should start going to sleep by counting white blood cells instead of sheep...hmm :)
So the first set back in a while, and in all honesty not even really a set back yet, just was hoping that the good times would keep rolling (in regards to my blood) and they took a little pit stop. The real bummer is that I have probably the most crazy insanely busy next like 2 months coming up with very little free time for resting, which I really need to do! So I'm going to try and take it easy today and maybe actually get 8 hours of sleep!
On the sunnier side of things life outside cancer stuff is going pretty well. I moved into my new place and am fairly settled now. I bought my first real couch! yay! :) Next up -- all the other furniture needed for a living room, but one thing at a time I suppose. Love life is going extremely well too, met a guy...not sharing details yet..but he makes me very happy and I've laughed more since I met him than I have in a long while. I also finally set up my team for the Lance Armstrong Livestrong Challenge (5k run/walk) I will be running in on August 27th in Philly. I welcome anyone who lives nearby, or even those who don't, to come join my team if they're interested, the more the merrier! I might make t-shirts, so you could at least get some swag out of the whole thing :). Regardless even if you don't want to run in the race you should check out my page that I set up at:
http://philly08.livestrong.org/carissa_caulfield
or you can check out my team page (Team = Eye Believe in a Cure) hehe... at:
http://philly08.livestrong.org/eyebelieve
Don't feel obligated to donate, cuz you're not, but I do really appreciate the services the LAF provides, and am constantly impressed by the amount of advocacy he does himself.
I'm going to try and post more pictures up here as I'd like you to all see my new place and my favorite little kitty Sammy :)
Cross your fingers, pray, send positive vibes, whatever it is you do to evoke positivity that my tests on Monday go well and that I can keep on keeping on (without having to take even more medicine!).
Be well everyone. Love,
Carissa
Wednesday, July 23, 2008
Monday, July 21, 2008
Thursday, July 10, 2008
Bah bah bah -- Good Vibrations --
Morning all,
So today's title is meant to be sung in a lovely sing-song voice and if you really want to be accurate you should probably be watching a small battery operated hamster sing it while mechanically dancing along with a surf board. :) (Britt -- this should remind you of a certain get well gift during the bicycle incident :) hehe). Anyways, the moral of the story is -- things are good, scratch good, things are great for now!
Let's see, updates for all since my last post. I have completed my search for a new apartment and found what I'm hoping is the perfect place for me and Sammy the kitty. I'm moving the farthest I've ever moved while living in the Boston area - a whole 3 miles away! :) The place is totally different from where I am now, it has high ceilings, lots of windows and natural sunlight, a new kitchen with a DISHWASHER (yay!) and lots of other nice touches. The couple that own the house live next door and also very cool, and young, so I'm hoping we will get friendly and maybe I can make a few new buddies out of the whole situation. So moving time is upon me now...though having said that I haven't done a damn thing to start yet! My poor family has had to move me at least 6 times in the last 6 years if not more :) Needless to say I haven't found a place yet that just feels right, I'm hoping this one will! This Sunday is one of the big moving days and I'm looking forward to having a full team of help in getting my crap over there. The only downfall to the moving thing is that now I need REAL living room furniture (bye bye futon and Ikea chairs) -- not quite sure how that's going to happen yet, but I'm sure it'll get figured out. :)
That's good news # 1. Number 2 involves getting a chance to meet more lovely girls last night at my monthly Young Adult Support Group at Dana Farber. This was my 3rd month of going and it was nice to see lots of familiar faces, and also a couple new people. It's unfortunate that the moderator for the group SUCKS! She's a very negative woman and always feels the need to interject and share stories about her patients, while the rest of us sit there thinking "SHUT UP, you don't have cancer, and you're not in your 20's, just let us TALK!" Now I'm not saying that her input is invalid because she doesn't have cancer, but rather the fact that she just doesn't stop yapping about her stories, which in fact most of us DON'T relate to, and she also makes other people in the group stop talking. It's very frustrating, anyways, nothing to get bent out of shape over because instead of letting her ruin all the fun I have talking to these girls I decided to bring my own sign-up sheet and get people's emails/etc so that we can meet outside of the group- YAY :). Most of the girls that were there signed on (oh yeah and one guy, Tom) and I sent out my first group email last night. I've already heard back from a few of the ladies and am trying to set something up for next week. I'm really excited about it :)
Last night I also met at the group a girl who has also delved into the world of Crazy Sexy Cancer by Kris Carr and has actually met her. I'm stoked to have met this girl (yes I know 'stoked' is a bit of an old school word, but I feel it's appropriate in this situation). I feel like her and I have a lot of stories to swap back and forth and it'll be awesome to hang out with another 20-something girl who feels that there is value in looking at healing from a whole-body way via food/diet/and other whole body stuff.
Next bit of good news -- I went for my 2nd detox sauna on Tuesday evening and also got my lovely vitamin B shot (gotta love the natural boost), as I had my next blood tests on Wednesday morning. Again I was pulling for my white blood cells (WBCs) and my neutrophils to have gone up (or at least stayed stable) so that I could continue the chemo and not have to take a short break. Well I finally got the call from Dr. Friedlander during my support group and the message was great! My WBCs went up from 2.7 to 3.4 (normal range is like 3.8-10.0) and my neutrophils went up to 1.57 (normal is 2.0-4.0). Yay! I'm almost back in normal range and therefore not as susceptible to easily bleeding, infection, bruising, etc.. good for me as I'm a clumsy girl :). So no break from sutent. Speaking of my lovely chemo pill my hair has started to turn white! :) I think I was expecting that to happen at some point and honestly am o.k. with it. I'd rather it turn white than it start falling out. So it looks like I may get my wish of being Storm from the X-men for Halloween this year after all :) I'm very impressed with the sauna stuff and did some more poking around today to read more about it, and also gave my holistic guy a buzz to chat about it. Seems as though infrared saunas are quite good at detoxing organic volatile compounds from your body and I guess these compounds can suppress your immune system. I'm not too well versed in the sauna stuff but my theory for now is, I enjoy doing them, they're not hurting me, they're not adversly affecting my chemo, so why not? :)
So all is well. I am busy as a bee, but very happily doing so. Last weekend was a doozy, but a good one. It was my youngest sister, Katrina's, 16th birthday!!! I can't believe how old she's getting as I remember when she was born :). It was also Alexis' (my niece) 1st birthday -- which we celebrated at a farm out by Ryan and Jackie's place. It was a very cute b-day party and Alexis is just so damn beautiful that I would go anywhere to spend time with that little munchkin. She took her first steps this weekend too :) . And to top it all off the whole family ( + 2 of my sisters' friends) went to the casino Sunday - Monday to celebrate both a late father's day gift for my gambling loving father and for Katrina's b-day. Then Monday Treen and I drove up to Maine with my mom and spent a day at my aunt's beach house in Old Orchard. Early Tuesday morning I got to do one of my favorite beach activities -- running along the beach at low tide and listening to and smelling the ocean breeze. I absolutely love that, I find it so relaxing. The week has continued in this busy fashion, but I am enjoying it immensely.
I'm looking forward to having all these fun plans for the next month or so before I have my d-day on August 18th. That'll be the day I have my 6 month ocular follow up with my aweful Dr. at MEEI where I will get my eye tumor measured and checked out. Later that same day I will have my next liver MRI and another heart test as prep for my 3 month chemo follow up with Dr. Sato in Philly the following week. I'm trying to not stress or get anxious about those couple of weeks yet, and hope that all the hard work (chemo, holistic stuff, diet) is helping wipe out any possible micro-metastases that might be floating around in my blood without anyone knowing. As usual my worry will be that the spot in my liver has changed and is not in fact benign...I'm wondering if I will ever stop worrying about that, or if it'd be possible to biopsy the damn thing so I could know for sure... hmm.. anyways, no negative talk for now as things are going very well.
I think that's mostly it for now folks. I've started poking around looking at what will be my next step once the sutent is completed in November, if all goes according to plan, and have found a few interesting things to look into. I'm also researching a drug for use in my eye to help with the inflammation and possible help restore some of my vision. We shall see... no pun intended.
love you all, be well!
Carissa
So today's title is meant to be sung in a lovely sing-song voice and if you really want to be accurate you should probably be watching a small battery operated hamster sing it while mechanically dancing along with a surf board. :) (Britt -- this should remind you of a certain get well gift during the bicycle incident :) hehe). Anyways, the moral of the story is -- things are good, scratch good, things are great for now!
Let's see, updates for all since my last post. I have completed my search for a new apartment and found what I'm hoping is the perfect place for me and Sammy the kitty. I'm moving the farthest I've ever moved while living in the Boston area - a whole 3 miles away! :) The place is totally different from where I am now, it has high ceilings, lots of windows and natural sunlight, a new kitchen with a DISHWASHER (yay!) and lots of other nice touches. The couple that own the house live next door and also very cool, and young, so I'm hoping we will get friendly and maybe I can make a few new buddies out of the whole situation. So moving time is upon me now...though having said that I haven't done a damn thing to start yet! My poor family has had to move me at least 6 times in the last 6 years if not more :) Needless to say I haven't found a place yet that just feels right, I'm hoping this one will! This Sunday is one of the big moving days and I'm looking forward to having a full team of help in getting my crap over there. The only downfall to the moving thing is that now I need REAL living room furniture (bye bye futon and Ikea chairs) -- not quite sure how that's going to happen yet, but I'm sure it'll get figured out. :)
That's good news # 1. Number 2 involves getting a chance to meet more lovely girls last night at my monthly Young Adult Support Group at Dana Farber. This was my 3rd month of going and it was nice to see lots of familiar faces, and also a couple new people. It's unfortunate that the moderator for the group SUCKS! She's a very negative woman and always feels the need to interject and share stories about her patients, while the rest of us sit there thinking "SHUT UP, you don't have cancer, and you're not in your 20's, just let us TALK!" Now I'm not saying that her input is invalid because she doesn't have cancer, but rather the fact that she just doesn't stop yapping about her stories, which in fact most of us DON'T relate to, and she also makes other people in the group stop talking. It's very frustrating, anyways, nothing to get bent out of shape over because instead of letting her ruin all the fun I have talking to these girls I decided to bring my own sign-up sheet and get people's emails/etc so that we can meet outside of the group- YAY :). Most of the girls that were there signed on (oh yeah and one guy, Tom) and I sent out my first group email last night. I've already heard back from a few of the ladies and am trying to set something up for next week. I'm really excited about it :)
Last night I also met at the group a girl who has also delved into the world of Crazy Sexy Cancer by Kris Carr and has actually met her. I'm stoked to have met this girl (yes I know 'stoked' is a bit of an old school word, but I feel it's appropriate in this situation). I feel like her and I have a lot of stories to swap back and forth and it'll be awesome to hang out with another 20-something girl who feels that there is value in looking at healing from a whole-body way via food/diet/and other whole body stuff.
Next bit of good news -- I went for my 2nd detox sauna on Tuesday evening and also got my lovely vitamin B shot (gotta love the natural boost), as I had my next blood tests on Wednesday morning. Again I was pulling for my white blood cells (WBCs) and my neutrophils to have gone up (or at least stayed stable) so that I could continue the chemo and not have to take a short break. Well I finally got the call from Dr. Friedlander during my support group and the message was great! My WBCs went up from 2.7 to 3.4 (normal range is like 3.8-10.0) and my neutrophils went up to 1.57 (normal is 2.0-4.0). Yay! I'm almost back in normal range and therefore not as susceptible to easily bleeding, infection, bruising, etc.. good for me as I'm a clumsy girl :). So no break from sutent. Speaking of my lovely chemo pill my hair has started to turn white! :) I think I was expecting that to happen at some point and honestly am o.k. with it. I'd rather it turn white than it start falling out. So it looks like I may get my wish of being Storm from the X-men for Halloween this year after all :) I'm very impressed with the sauna stuff and did some more poking around today to read more about it, and also gave my holistic guy a buzz to chat about it. Seems as though infrared saunas are quite good at detoxing organic volatile compounds from your body and I guess these compounds can suppress your immune system. I'm not too well versed in the sauna stuff but my theory for now is, I enjoy doing them, they're not hurting me, they're not adversly affecting my chemo, so why not? :)
So all is well. I am busy as a bee, but very happily doing so. Last weekend was a doozy, but a good one. It was my youngest sister, Katrina's, 16th birthday!!! I can't believe how old she's getting as I remember when she was born :). It was also Alexis' (my niece) 1st birthday -- which we celebrated at a farm out by Ryan and Jackie's place. It was a very cute b-day party and Alexis is just so damn beautiful that I would go anywhere to spend time with that little munchkin. She took her first steps this weekend too :) . And to top it all off the whole family ( + 2 of my sisters' friends) went to the casino Sunday - Monday to celebrate both a late father's day gift for my gambling loving father and for Katrina's b-day. Then Monday Treen and I drove up to Maine with my mom and spent a day at my aunt's beach house in Old Orchard. Early Tuesday morning I got to do one of my favorite beach activities -- running along the beach at low tide and listening to and smelling the ocean breeze. I absolutely love that, I find it so relaxing. The week has continued in this busy fashion, but I am enjoying it immensely.
I'm looking forward to having all these fun plans for the next month or so before I have my d-day on August 18th. That'll be the day I have my 6 month ocular follow up with my aweful Dr. at MEEI where I will get my eye tumor measured and checked out. Later that same day I will have my next liver MRI and another heart test as prep for my 3 month chemo follow up with Dr. Sato in Philly the following week. I'm trying to not stress or get anxious about those couple of weeks yet, and hope that all the hard work (chemo, holistic stuff, diet) is helping wipe out any possible micro-metastases that might be floating around in my blood without anyone knowing. As usual my worry will be that the spot in my liver has changed and is not in fact benign...I'm wondering if I will ever stop worrying about that, or if it'd be possible to biopsy the damn thing so I could know for sure... hmm.. anyways, no negative talk for now as things are going very well.
I think that's mostly it for now folks. I've started poking around looking at what will be my next step once the sutent is completed in November, if all goes according to plan, and have found a few interesting things to look into. I'm also researching a drug for use in my eye to help with the inflammation and possible help restore some of my vision. We shall see... no pun intended.
love you all, be well!
Carissa
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