Long time no write.

Hi everyone!

First off I wanted to thank everyone for all the positive thoughts and wishes, prayers, chanting, etc :) that were sent my way during my recent scans. I know it has been a while (almost a month!) since I have posted and life as usual seems to fly by without me really noticing! November was chock-full of birthdays in my family with 4 out of the 7 of us having them that month! It is nice though to have 4 excuses to get the entire family together and eat cake and celebrate. And it's entirely more hilarious now that we've added the obligatory birthday hat to the whole mix! :)

In any case November was scan month and surprisingly enough I was not as anxious pre-scan as I have been in the past, though that's not to say I wasn't at all. I actually had a horrible scan report nightmare a couple of nights before that basically was me receiving bad results from the liver MRI and being told I had metastatic disease. It was very creepy... in any case, the day of scans arrived a mere 12 hours after I got off the plane from being at a conference in Ottawa Canada - eh. :) Jeff was a sweetheart and took the day off work and flew up on Wednesday night so that he could be with me on Thursday. My family also pulled their amazing stunts and spent the day with me as well with my dad taking the morning shift and mom the afternoon. It's nice to at least never really be alone in this. Anyways, off to the MRI place at 7:00 in the morning (and YES I did go running before we went) for my much anticipated liver MRI. This time I finally got up the nerve to ask why it was that a family member couldn't come into the MRI room with me, as it's only magnets and not radiation like CT's or PET scans. And lo-and-behold you can have someone with you! One person was allowed, so I left that decision up to Dad and Jeff and Dad was the lucky winner. So in we went. I at least come a little more prepared now and bring socks so that my poor tootsies don't freeze off while I'm in the sub-zero (almost!) room.

45 minutes later we emerged and were told I could actually just stick around and have my chest CT done at B&W's asap if I wanted to instead of getting it done at Dana-Farber (as I was supposed to later that day). So we stuck around and then had that done as well. Then downstairs to wait for copies of the CD's to Fed-Ex down to Philly for Dr. Sato and team. Amazingly Jeff and Dad somehow managed to fall asleep while waiting in the medical records room while I busily sat there re-organizing a mound of medical papers. I really need someone to organize them for me, and to also help me out with research and documenting it all, any volunteers?? That's a big project of mine. So afterwards it was out for some food, finally, as I wasn't able to eat before the scans and by the time we left it was about noon. Then the fun part....waiting.........

Waiting is not as fun as it sounds folks. And I am not a good waiter. I am impatient and relentless. I called B&W's hospital at 3pm to ask them if they had the MRI report from that morning's scans. They told me they had the CT results, but no MRI. I decided, well let's pick up the CT results anyways and then we'll drive Jeff to the airport, and then pickup the MRI report in the morning before my 9:30am appt. w/ Dr. Friedlander at Dana-Farber for scan followup. When we got there, literally just as I was signing for the CT, the guy says "oh looks like the MRI report just came through, do you want that too?" Do I want it, NO not really!!, do I want to have it so I can send it along and end the anxiety period YESSS!!! So I get the report. Jeff came inside with me and as we are walking out of the room I can't resist and start to read, much to my horror. The first sentence says "We see 4 focal liver lesions." OK NOT A GOOD START!!! 4?!!! Since when were there 4!! Freak out time. I'm not even sure that I finished reading the report the first time I looked at it. I know I did begin shaking and I turned to Jeff and told him that we shouldn't see each other any more and we couldn't be together -- SORRY HONEY! It was just my nerves talking, well that and the idea that I would hate for him to feel pressured into being with me if I knew I was stage 4 and most likely facing a near term death sentence.

Post shaking we went back out to the car where my mom was waiting with long-drawn faces. I gave her the reports and started breaking down. As would be the pattern for the entire weekend. As chance would have it the nurse from Dr. Sato's office called me regarding something unrelated just maybe 10 minutes later and when asked what was wrong I spit out the whole story in one deep depressed breath. She was a complete doll and told me that if I faxed the reports over asap that she would get them to Dr. Sato for him to get a quick look at in the morning (even though he sees patients all day on Friday and only reviews cases on Mondays), and that she would call me afterwards and let me know what he said. That resulted in an evening of heavy imbibing, sorry liver I know you have been taking a beating lately, and trying to drown out some of the anxiety and sorrow. Friday I took off work as I was completely incapable of doing anything and focusing on anything. I also skipped out on my Dana-Farber appt. (which I feel a bit guilty about considering how good Dr. F. and Angie have been to me)...but I needed to. Then we waited some more...waited until we heard from June (the nurse) and was told that Dr. Sato looked at the and thinks they are benign, but needs to see the actual images and CD's to be able to compare with my previous scans...which means waiting til Monday. People can tell you "benign" all you want, but honestly I don't feel relief until I know a team of specialists whose main job is assessing liver lesions (benign and from ocular melanoma metastases) has looked them over. So bring on another weekend of anxiety ridden ridiculousness. Jeff called out of work on Friday to be able to stay with me, and I was forever grateful for it. I honestly can't say I remember that weekend much.. it's all a very big blur. I know we celebrated my sister's birthday on Friday and then we played poker (I won, yay!)...but most of the rest of the weekend is foggy.

Sunday Jeff headed back, and I stayed at the parents' pad to await Monday's news. Monday morning I woke up and decided to go outdoors for a run instead of my usual indoor running. I put on my cold weather gear wrapped myself up and hit the road. I considered not coming back. And I ran until I thought that if I ran any further I may have a hard time making it back. I think it ended up being around 6miles. Not bad, especially considering all the hills!

I got back and awaited the inevitable call and for the "bomb" (my phone's name while it is awaiting life-altering information) to ring. I had left the bomb under my dad's care because I didn't want to be the one to pick it up. Around noontime it finally rang, Dad picked up, June almost wouldn't tell him anything, then he finally handed it to me and mouthed "It's good news." My heart felt like it was going to pound through my chest! There's no going back once bad news is given so the fear is palatable. So in fact, it was good news. The team had decided that the liver lesions were all benign FNH's . PHEW! Breathe of relief. But still plenty of questions, why hadn't these been documented on the 1st, 2nd, 3rd, 4th scans? Why were they just noticeable now? How could you tell that they were definitely NOT cancer?

Questions had to wait until I saw Dr. Sato on Wed. the night before Thanksgiving, but that was o.k. by me. I hightailed it down to DE after that to celebrate a little with Jeff and then with Mike and Rose. My brother Ryan and my Mom drove down on Tuesday evening to come with me on Wednesday which was quite nice of them, and I was glad to have everyone there. I had baked cookies for Dr. Sato and his nurse for the holidays to bring with me and put them in cute little boxes and such, it was fun to bake with Jeff :) So Wed. came and I got good answers about how to distinguish and Dr. Sato told me "Don't worry I will take care of you." :) It was sweet, he is such an amazing person. I can't believe the capability of someone who sees so many people to be able to express individual empathy by case and actually care about my concerns. I know that that might seem as though it would be something that is expected from all Dr.'s but it is definitely hard to come by. We also decided to continue the Sutent for another 3 months, so I will be on that until February (hopefully). Then I'm not sure. I know I want to take about 1 month off to do some holistic cleanses, but then it's back to some sort of adjuvant treatment I think. After the discussion with him last week I'm leaning towards GM-CSF....but we'll see.

On that note, there is a fantastic blog out there for anyone who is interested in learning more about OM, or about treatment options for OM mets. The people who write it absolutely astound me with their strength and perserverance. It is a young couple from the Boston area, and the husband was diagnosed with mets. His wife and him have flown around the country and devoted countless hours to doing intense research in order to try and find the best treatment possible for him. It really is just amazing. Makes me speechless at times, and also very thankful that I have access to information like this. All ocu-mel patients who have seen this blog are better for it, and more informed. Check it out if you get a chance:

http://greggandsara.blogspot.com/

I can't say enough positive things about them, even though we have never met. On the downside it makes me feel as though I haven't done enough research and need to do more...if only there were time. And if only there was a place where all patients with this disease could go and this information could be centralized! The closest we get is an email serve-list called the ocu-mel list. I think I will post a few links on the right-hand side of my page with this info. Please keep them all in your thoughts this week as Gregg (the hubby) is undergoing some new treatments and they need all the support they can get.

Additionally, thanks to everyone who kept my cousin in mind last week as well. His surgery went well and when we saw him on Thanksgiving he seemed to be on the mend. They think that they were able to get all of the disease in/around his thyroid, but I believe they're still awaiting the biopsy results.

Which brings me to Thanksgiving.. it was in fact a very good year to be Thankful. I know that seems a little crazy, what with being diagnosed and all, but it definitely has made me appreciate even more the things that are important in my life. For that I am very thankful. With the new clear scans I will actually pass my diagnosis date, January 28th which will mark 1-year since discovery! I'm not sure whether to celebrate one year or hold a moment of silence for all that was lost? I guess we'll see how I feel that day.

The rest of last weekend I spent with my family doing various things. My sisters, mom, and I went to this thing called the "Festival of Trees" a pretty cool event in Springfield that raises money for the boys and girls club of Springfield. You get lottery tickets and get to place them in various buckets for the different trees. There are a ton of trees and they're all decorated and contain various gift cards, money, presents, items, etc.. it's pretty cool. If you win you win the tree and everything on,under, and next to it! I'm trying to use my vision board and manifesting to imagine myself winning a tree. Treen and I also had our second annual ginger-bread house making event (ok I just made that up, but we mine as well call it that!) and it was just as (un)successful as last year! Though it did end up staying together, of course until I ate part of the roof. OOps! I love gingerbread. :)

Oh and before I forget, a few pictures from the last couple weeks....



So that's been that for the last month or so. I am in the clear for another 3 months and looking forward to the holidays quite a bit. Jeff and I are having two trees (upon my insistence, one at my place and one at his) and will be buying the first one this Saturday! :) Yay.

I've had a tough end of the month, but am so-so stable for now. I need to find a new way to dealing with the possible bad news I may encounter at some point in my life of my cancer spreading. That is one obstacle I feel as though I haven't made any progress on, and unfortunately it's the biggest and most important one. If I can somehow wrap my head around the idea that if I do get mets I CAN COPE and not automatically count myself as dead (as I tend to do) then I think I may be able to spend more time living and less time worrying about not living... we'll see, it's a big task and top of the priority list.

To all those who I didn't get a chance to talk to or see over the holiday, happy belated Thanksgiving, and a happy holiday season.

I wish you all the best and hope Santa (or whomever else) brings you nice holiday gifts!! :)
love,
Carissa

The sun will come out tomorrow...(sing along folks)

Happy Day after Obama was elected President everyone!

First off let me say how incredibly glad I am that we are on the brink of hopefully some change in the US and some change in the way we are viewed by others. It's about damn time! 8 years of ridiculous Bush was just waaaayyyyy too long! Anyways, since this isn't a political blog I will leave it at that. I am very happy that Obama was elected and I'm looking forward to what that means to our country in the very near term future.

I also wanted to thank everyone who sent some of those groovy positive vibes my way a few weeks ago when I asked you all too, seems to have worked! I went in for my blood tests last week and my counts had rebounded a little, enough so that I didn't need to stop my meds at all. Hopefully they stay that way for the next few tests I have before my scan, I have them again on next Wednesday so keep your fingers crossed :).

Things for me are still in that somewhat "blah" phase. There are ups and there are downs. There are days when I'm really really good at being Raw and there are days when I suck at it! The only consistent thing in my life is that it's always insanely busy! A couple weekends ago Jeff and I finally got to go to the Philadelphia Eagles game that I had bought him tix for for his birthday and it was quite a nice time. I really enjoyed the game, though all I did that weekend was sleep, sleep, sleep, sleep.... I even slept through the Phillies World Series Baseball Game party we had on Saturday night -- OOPS! But apparently my body must have needed the rest!

The rest of last week seems to be a bit of a blur with the exception of Halloween. I was a little sad that Jeff and I weren't going to get to go out all decked out and dressed up for Halloween and so I called my brother to see what they were doing with Alexis (my niece) for that night. At the end of the day it worked out really well! Katrina and I latched on to Ryan, Jackie, and Alexis' Halloween plans and went to their house to go trick-or-treating with her. It was sooo cute! She was dressed up as Minnie Mouse -- though she did not make a very good trick-or-treater she cried every time we went to a new house, and she passed out 30 minutes after starting , hehe. All well maybe next year! Although it was fun to get a chance to dress up. I dressed up as a big orange pumpkin, it was awesome. :) I wish I had pictures, when I get them I will post! So Halloween turned out pretty good afterall and then Jeff was up here that night.

Saturday was a pretty fun day as well. We went to the Boston Vegetarian Food Festival, which was a little bit of a let down, but did have a few cool things. We managed to pick up a spiralizer (a machine that cuts veggies into spiral spaghetti type strips) that I have been wanting for a while now! And we also got a Raw "cook" book to leave at Jeff's place in DE that promises raw meals in 5 minutes. We're trying out a fettucine alfredo pasta this evening, should be interesting! :) Hmm talking about food is getting me a little hungry. Anyways, we also went to my aunt's 25th surprise Anniversary party that night and got to hang out with my whole family again. It was actually a lot of fun! The food was so-so, but the drinks were cheap, and there was a dance floor to boogie on. So I dragged Jeff out a couple times to twist-and-shout and then the rest of the time I bounced around dancing with my mom and my sister. Needless to say I think Katrina was a little embarrassed dancing with the two of us, but hey it was West Boylston! Who cares?! :) We had a lot of fun that night though and ended up staying much later than I thought we would. Sunday was pretty typical, a big breakfast, then saying goodbye to Jeff before lounging around use-lessly for the rest of the day. I'm always a bit sad on the days that he leaves :(.

But Monday helped rebound my energy (well after getting a verbal beatdown by my boss --oops!) as we went for dinner for my Mom's B-day. That was quite a good time too and we made her wear the mandatory birthday hat even though she didn't want to! It was very entertaining :). We had a nice dinner and a decent cake (I got candles in the shape of little booze bottles!!) and she got some nice gifts. My sister Britt got her a pretty hilarious card. It was one of those ones that is over a foot tall and plays music. On the front it said " A long, long time ago..." and then you opened it "...you were born." And it played the music from the movie 2001 Space Odyssey (which I still think is actually from Star Wars, but Jeff says no.) It was pretty funny, especially in the middle of a restaurant!

And now here we are on Wednesday. I am back down in DE working for the rest of the week and spending some time with Jeff as usual. It's nice to be back with him and I'm looking forward to a not entirely packed week. Though I am planning to meet a woman from the OCU-MEL list serve site I belong to for patients with ocular melanoma, so I will be really excited if I do in fact get a chance to meet her!

Speaking of cancer, and the whole reason I started blogging, scan time is quickly approaching. It's two weeks from tomorrow -- yikes. I try to focus on my vision board and the perfect health section, and I try to meditate at least a couple times a week. And I've finally started drinking homemade green smoothies every morning --yum yum to drinking spinach and spirulina. Mentally I feel unprepared for these scans I guess. I keep having what I'll call "psycho-symatic" (sp?) pains in the area where I think my liver is... every time I think about my scans I feel like I have a little feeling in my liver. I'm fairly certain it is all in my head. Last time before my scans I had started having these weird muscle spasms that were freaking me out a bit and everything was clear. So you all should start your positive thinking, praying, chanting, etc.. now and keep it going straight on through til Nov. 20th. I'm at a point now where I wonder how much positive thinking can really alter what happens to us? Anyone got any opinions on it? I'm starting to fall into the believing it does matter camp and so am trying to get my mindframe in the right place, hard as that may be.

I also want to ask everyone to say an extra prayer for my cousin Mike on Nov. 20th, he is going for a biopsy that day on a tumor that they are pretty sure was caused by the radiation he received 3 years ago when he was treated for Non-Hodgkins Lymphoma. I wish the kid could catch a break, I wish my family could catch a break, two young adults in the same family battling cancer at the same time, and diagnostic tests on the same day! Double-yikes. I already told my poor grandma that she should go to church and just stay there all day on the 20th. :) hehe. In any case, please pray that him and his family find the strength to get through this yet again, and that this new cancer is contained and treatable. I know I will be thinking of him that day as well.

Well that's it for now folks, I'm sure it's more than you wanted to know, as usual, but hey why not read about my life for a little bit and distract yourself from work or your own obligations. :)

Be well and happy and healthy to everyone going into the holiday season!
Carissa

LAF Race Pictures

Check em out!

It's been a while...

Happy Wednesday everyone!

It seems to have been quite some time since I last posted so I wanted to just type away to you all and tell you about what's be going on. As usual it's been quite busy, but for the most part in all very good ways! I'm also hoping to post along quite a few new pics for everyone to look at from some of the stuff I've been up to recently.

First off, cancer-wise things are going o.k. I'm gearing up (and by that I mean FREAKING OUT) about my next set of scans coming in November (Nov. 20th to be exact). I guess I shouldn't capitalize freaking out because its more like a mild case of scan-xiety so far, though judging from past experiences it will develop into a more fun raging beast of a case within the couple weeks before hand. This is what I consider my big scans of the winter -- if , scratch that, WHEN everything comes back clean and good I will be able to breathe major relief and enjoy the entire holiday season with a little lighter load on my mind. So that's been on my mind a lot lately. I've also not been doing so hot on staying on the raw food band wagon the last 4 weeks or so (I'm still on most of the time, but on average I'd say I'm hanging on by the tips of my nails -- which aren't very long). Some of the time I've been very very good -- like while I was away at my awesome "Crazy Sexy Cancer Bootcamp" at Kripalu in the Berkshires of Mass (a beautiful yoga retreat center up in the mountains). (Check it out below!!)

The bootcamp was done by one of my favorite people who inspired me to pick myself up off the proverbial and literal floor -- Kris Carr, you all should really check her out she's quite inspirational. In any case, it was a crew of about 70-80 women (and 2 brave men) all of whom were touched by cancer in some way trying to reap the benefit of learning about ways to fight cancer through your nutrition/eating, manifesting and envisioning positivity (think the Secret), and through some pretty powerful sharing sessions. It may all sound a bit sappy to some, but in a lot of ways it made me feel re-inspired and rejuvenated in pursueing the path to wellness that I am trying to be on -- now whether or not I've followed it recently is a horse of a different color. I seem to have fallen into a bit of a lull with my raw foods, I still love buying and eating them, but I find my funds and my time tight and I wouldn't be lying if I said I wanted to ease up a bit on myself around my b-day and all the various celebrating that entailed (I had my first couple martinis that I've had since like February!).
(Kris and Terri from CSL below)

But I won't complain too much, I'm trying to get that back on track. Starting with my creation of a vision board the other night. For those of you who have no idea what I'm talking about wikipedia it, or google it and I'm sure you'll find loads of info. Mine is as organized as I like to think I am with some main foci and areas :)So the first pic is my entire vision board (tilt head to the left :) ). It's a cool little thing that is supposed to help me focus on my goals and visualize and believe that all these good things have happened and are going to happen. The second pic is a close up of the center of my board which is the part I'm focusing on first and foremost -- having PERFECT HEALTH. I put up a picture of what a clear liver MRI looks like, and also what a clear tumor-free eye looks like as well :) . Since those scans are coming up soon I'm hoping this little middle section will definitely hold true. The third picture is of my love/relationship corner :) I've got a little pic of me and jeff and then some gushy girly stuff about true love, marriage, kids, etc...I'm glad it hasn't scared him off yet :) There is also a corner on there which has stuff related to eating right and taking care of my body with meditation, massage and green drinks :) I like it. I posted it right next to my bed so I have to see it every morning when I wake up and at night when I go to bed.

So what else has been going on you ask? Well I've finally hit the point in life where I know round-up to 30 officially...YIKES! I turned 26 just one -week ago today, and Jeff just turned 26 this past Sunday. We're really getting old :) I had such a fantastic birthday week though and wanted to thank my family and all my friends for making it so memorable. It started off with a cool week down in DE and a celebration with some of mine and Jeff's friends (special thanks to Andi and Jeff who drove up from DC area for the festivities!!). We went out for a nice dinner and then off to a haunted house at an old prison. It was pretty creepy and definitely fun :) And also very nice to be doing something other than just drinks and dinner for a b-day celebration.

Hehe. Some good pics there.

Anyways, after that it was back to Beantown for the night, not without some adventures while driving, as in my car deciding it didn't want to shift anymore and Jeff and I fearing for our lives as my brake pads were completely SHOT! But we made it back in one piece. So Sunday we were off to WMass to my parents place and out for some apple picking before the big b-day celebration with the fam. Check it out:
Apparently there's also an awesome picture of Jeff stuck up in a tree, but I have yet to see it :) It was a good time, but damn sunny and hot as anything! Not to mention there were hardly any apples :( I guess the orchard had lost 80% of its crops to frost and hail or something. All well.

Afterwards it was off to the Salem Crofts Inn for a little dinner with the entire family. How insane is this math 7 (the original fam) + 2 (new fam -- Jackie and Alexis) + 2 boyfriends (Jeff and Austin) + 1 grammy = a huge loud and crazy ass room. :) It was pretty awesome though. It's very infrequent that we get a chance to all get together and I'm glad that we were able to do for my b-day this year, it really meant a lot to me. Also my family, namely my sisters and my mom, spent copious amounts of effort trying to purchase cards/give gifts that would make me cry -- yes I know it sounds horrible, but really it's done out of love :) They always harp on me for giving essay-type cards with sappy messages that almost always trigger a few tears of joy, so I guess they figured it was time for reciprocation -- and they succeeded :) I was lucky I didn't burst into those big heaving sobs that I've experienced from time to time. But all the gifts were thoughtful and I was again so poignantly reminded of how much I love and cherish my family and how incredibly lucky and blessed I am to have them.
(Me and my sisters) (The WHOLE family)
(Just the kids.. though I suppose we're not kids anymore) (The original 7 of us. Good job rents!) (And last but not least... Jeff in the mandatory b-day hat!! hehe)

So that was the b-day extravaganza party, it was delicious food and delicious fun. I had my first ever Coldstone Creamery Ice Cream B-day cake, and I have to say it was the one and only time all 12 of us were quiet!

That's most of the last month. My retreat was great, my b-day was great, Jeff is great, I am so-so. :) Trying to get back into the "great" camp. Though sometimes I think it may take just a few days of being down to be able to go back up. My blood tests are not in the great camp either the last couple times, and I now have to go back next week to get re-tested as I'm at "critical" level with my neutrophils (the all important part of your white blood cells that fight infections), and if I don't rebound or stabilize over the weekend I will need to stop my chemo for a couple days --- so I ask everyone to send some positive thoughts my way and help me get back on the track of good raw food, lots of rest and peace, and a strong immune system!

Love you all. And thanks to everyone for all the b-day well wishes!
Be well,
carissa

p.s. I will post those pictures from the Lance Armstrong Race that Jeff and I did in Philly finally :)

Turns out... I'm not superwoman

So as it turns out, I am not superwoman, nor am I impervious to illness. I finally got my first cold since having started my raw/vitamin/immune system kicking butt routine. I've been home, literally home at my parents' house, for almost 3 days now recouping on the couch and sleeping in my childhood bed --- quite a throwback.

I have to say though, I'm going a little stir crazy. It's only been one day that I haven't been able to run/exercise but the sedentary lifestyle is driving me a little nuts! I want to be going about my usual busy routine of running/showering/going to work and doing 1000 other things afterwards. Oddly enough, I'm looking forward to being back to this come Monday morning -- I thought I'd enjoy having some extreme downtime of sleep and no bothering with anything. Albeit, I probably do need the sleep. I think I've slept more in the last two nights here than I have in the last 4 or 5 months!

The cold came, as most do, at a horrible time. Work is swamped right now, our company having recently been acquired by IHS, a lot of my projects coming to a head, and I'd finally been starting to feel a little bit of a fire under my butt in terms of being motivated to work long and arduous hours at the office. I also missed out this week on some of the best parts of my job, a big annual strategy meeting with my team, and a conference in Montreal Canada that I've been planning on for months! What a week to miss :( But, I guess I don't get to pick when I get sick, and I need to be more careful about exposing myself to illness, especially while I'm still on chemo, and especially as we come into the winter months.

I suppose on the upside there is looking forward to the events of the next few weeks. As long as the rain holds out, I'll be at the Big E with my sisters and mom this weekend, and participating in a 5k cancer walk/run at UMass Memorial Hospital in Worcester on Sunday. Then next weekend I'm off to a retreat that I've been looking forward to for quite some time in the Berkshires. It's being run by Kris Carr (the author of 'Crazy Sexy Cancer Tips' and the person who helped get me motivated to not be beaten down by cancer at a young age) and should be a very relaxing yet re-energizing retreat. I will make sure and post afterwards about it. Then a few days after that it's off to Philly/DE again to see Jeff and my friends as we plan a joint birthday party! For anyone in the area and interested, let me know I'd love to see you! The plan is on Friday, Oct. 10th to head for dinner and drinks at a place in Philly then off to ESP: Terror Behind the Walls -- supposedly one of the scariest haunted houses in the US :) Sounds like fun to me!

Well that's all for now. I'm still waiting for pictures from the LiveStrong race Jeff and I participated in at the end of August and will post them as soon as I get copies!

Hope everyone is well, and I'm looking forward to feeling back to 100% (or as close to it as possible) and finally getting rid of this darn cold!

Be well!

I love fall.

Hi everyone,

Thought I'd just give a quick update as to how things are going these days. We're starting to come into my favorite season of the year, fall :) I love the smell of autumn and the sight of the brightly colored leaves scattered everywhere on the ground, and last but not least by birthday in October :) I feel as though I have extra reasons to celebrate this year and that each year I am granted is a blessing rather than viewing growing old as a negative thing! I hope to be here to bitch and whine about going "over the hill" and having creaky bones and an aching back.

In any case, the end of August finished off quite well if I do say so myself. A week or so after my last scans I had my 3 month Sutent/scan follow up with Dr. Sato and I also scheduled an appt. with Dr. Shields and Shields down at the Wills Eye Institute in the hopes of switching ocular oncologists -- I'm just too fed up with the ignorance and malpractice (if you ask me) that occurs at Dr. G's in Boston. The weekend before the appt. was also fun-filled I was down with Jeff in Philly/DE and we participated in the LiveStrong Challenge 5K run. It was a fantastic day on many accounts -- there were quite a few people (over 5,000 or so) and it was sunny and gorgeous. The race went well, though I was, as usual, hard on myself and upset for completing it slower than I thought I had! Though it was extremely inspiring to be running with the "I am a survivor" tag pinned on to my back, and passing by various people who were running with the "In honor of/ In memory of" tags. I gained strength and some drive from being able to admire what my body is capable of accomplishing despite being 4 months into chemo and battling cancer. After finishing a photographer pulled me over and asked if he could take some pictures of Jeff and I for Time magazine -- so we'll see if our pix make it in there! If so I'll post and let people know where they can find them :)

The appt.'s that week were o.k. As usual I enjoyed my visit with Dr. Sato (of course considering my scans were clean it was easy to do so :)) and shared quite a few inappropriate quips with him that made him laugh. I sometimes feel as though it's partly my duty to make him smile since so many of the patients he has are Stage 4 and I'm lucky enough to be seeing him adjuvantly. My other appt was good and bad. I was disappointed to hear that the measurements taken from my ultrasound here in Boston were significantly different both in size measurement (initial and the 6 mo. post radiation scans) and different in the amount of change that occured between these two appts. I still do not understand how this is possible mathematically -- but for now I'm choosing to let it go. On the upside, I would much prefer to wait 3 -4 hours at Wills Eye to see them there than to be immediately seen at Dr. G's in Boston. I am thankful to be switching to them for my 6 mo. eye follow ups from here on out and am looking forward to hopefully better news in regards to slow tumor shrinkage and treatment for the fluid in my eye when we go next in Feb. 2009.

So on the cancer front most is quiet these days. My next set of scans will be in November the week before Thanksgiving -- I hope and pray that I will have plenty of reasons to give an abundance of thanks on that day. I am still on Sutent and am 4 months in, continuing to so far only have white hair and the annoying rash as side effects, both things I am more than capable of dealing with. In November I think I will push Dr. Sato to allow me to continue 3 more months of Sutent in the hopes to complete 9 months of adjuvant Sutent treatment before looking for my next plan. If not I have a few ideas in mind, but they all need further investigation.

Otherwise life is hectic as usual. I recently had my first few nights to myself since probably mid July after being with Jeff and having friends visit for almost an entire month and a half straight. It was much appreciated and thoroughly enjoyed though :) I'm continuing trying to get back into the swing of work, at least up until the next nervous scan period :) and am keeping busy as usual. I'm trying to take advantage of every minute of every day....easy for a person with a lot of energy (like myself) but hard for a person who's always broke (like myself) :) but I'm doing the best I can at the moment.

I hope everyone is well and have enjoyed seeing so many of you over this summer -- thank you all for helping me enjoy and appreciate the warm and balmy days :) I hope it continues throughout the rest of the fall!

Be well!

Life is good.

Hello hello all,

It seems I have lapsed again in keeping my blog up to date, and for that I apologize, as usual life has been extremely hectic! Since the last time I wrote August has come and gone and taken my life in a whirlwind...thankfully it's been a fantastic whirlwind :)

July finished off with a fun trip to NYC to visit some friends that I had studied abroad with and a couple of whom I hadn't seen in years, so it was great to catch up with them! We had a packed weekend, but I think I managed to get enough rest. That Monday I had my next set of blood tests and my WBC's and neutrophils had actually stayed stable, so I think perhaps all the recollecting and laughing with the girls helped at least a little :) I'll try and post some pictures from that weekend here.

After that I was only in Boston for a couple days before busing it down to Philly to help my boyfriend Jeff celebrate finishing his bar exam -- yay!!! It was good timing too, b/c I think had he had to study for too many more days he might have legitimately lost his mind :). I also got the chance to meet some more of his family while I was down there and hang out with our friends Rose and Mike who inadvertantly led to our getting together :). Good times. I came back that Sunday to celebrate my bro's 24th birthday -- Ry guy you're starting to age! :) then was back to work for one week before heading off for vacation. In the meantime I had another blood test that was again good, and my WBC's and neutrophils had climbed. On the downside I've been developing a lovely immuno-suppressed eczema type rash on my elbows, which has not been very fun :( and my hair continues to get white -- but that part I think is kinda cool.

Vacation was as most are, great, but wayyyyy too short. It was over in the blink of an eye, but it was cram packed with tons of activities and definitely made the time leading up to the imminent Aug 18th three-month scan checkup quite a bit easier.

Vacay started in Maine at OOB where my family has been going for ages, sadly the 5 days I was there we didn't have much sunshine, but regardless it is always fun getting to spend time with my parents and brothers and sisters. I was hoping to get a chance to see Alexis' reaction to her first time at the ocean (I think?) but it didn't quite work out this year, but maybe next year? I hear that she loves the water though, which is a bit surprising considering how damn cold Maine water is. I do in fact love Maine though, one of those places where when I arrive there I feel myself let out a nice deep breathe and tension rolls off my shoulders, if only for a little bit. Being there also allows me to do one of my favorite things, run on the beach in the early morning. The smell of the ocean and the cool breeze are two pretty powerful relaxants for me...maybe there is something to those relaxing tapes that play sounds of the ocean :)

So depsite the not so hot weather, Maine was good. I had another round of good blood tests that Monday as well, let's hope that trend continues! I left there Tuesday night to drive back to Boston and repack my bags for an early early flight out of Logan as I headed to Michigan to meet up with Jeff and some of his fam at his Grandma's cabins in upper-peninsula Michigan. (By the way it was just brought to my attention this morning that all the states I visited on my vacation began with an "M" hehe). The flights were uneventful but the arrival was not. I touched down in what looked like the middle of the woods, and actually was, but had a nice warm welcome from Jeff :) always a good way to start the day.

The two hour drive back to their cabins on Lake Superior were well worth it. The view, the land, the lake it's all absolutely breath taking. I think the best word for it is just utterly serene. Quiet, calm, and everything that I needed right at that moment. I hope to get a chance to go back again in the future :) I'll also try and post some of those pictures. I spent a couple nights there with him, his brother, mom, and grandma before Jeff and I started our 13 hour road trip we had planned in order to save a few bucks and get us down to a wedding for of a college buddy of his.

So Friday early morning began our road trip, and in fact, and perhaps surprising to some, it was quite enjoyable. We traded off driving and saw a few fairly interesting things (a place called Mosquito Inn, and a Paul Bunyon Restaurant with a 50 ft high statue of him ... to name a few) and some 13 odd hours later we arrived in St. Louis Missouri -- the last stop on the vacation train. That night I got to meet a handful of his old college cronies, and it was interesting, a bit like being the female equivalent of the godfather as I walked around the next day surrounded by 5 strapping young men. :) Long story short, we ended up in Hannibal MO for the wedding, and needless to say I'm fairly certain that will be my one and only visit to Hannibal and most likely my only trip to MO ever. Though at least now I can say I've been to MI and MO and we drove through most of Wisconsin (lots of fields) and Illinois (more fields). Anyone who's looking to develop some land those are the places to be...though getting people to move into the houses may be a bit tricky. The best part about Hannibal was the fact that you could buy a Jack and Coke and a Smirnoff Twist for a mere $5 :)

In any case, Sunday was the end of vacation and back to Boston to prepare for a looooooong day of tests/scans on Monday. That evening I took another drive up to Manchester NH to pick up Andrea (bf from Baltimore) and Jeff -- poor Andi had SouthWest lose her luggage :( though it was eventually found.

So then along came Monday...the 18th had finally arrived. I would say I almost didn't know it was coming because I was so busy, but that would be a little white lie. I did start to get a little "scanxiety" on Sunday, though I still was able to sleep and enjoy spending time with both Andi and Jeff that night. Monday morning brought me back to my least favorite of all my doc's Dr. Douchebag (ahheeem I mean Dr. Gragoud-asssss as I've decided his name should be). I had my 6 month eye check up to document my tumor's regression and the general status of the aforementioned "affected" eye -- I think it's hilarious when they call it an "affected" eye, as if the eye could choose to either be affected or not by the cancer hehe. Anyways, Dr. G. was his typical lack of any good bedside manner man and did not tell me anything of any consequence except that I still had fluid (duh, I can't see dude!) and that the tumor had regressed. I inquire "can you tell if it has shrunk quite a bit, or just a little?" to which he replied "It doesn't matter." this is why I don't like him -- he assumes that what matters to him is all that I should be concerned with and single-handedly tries to rip any control a cancer patient has over their own knowledge of their disease. I can't wait to no longer be under his care (which hopefully will come to fruition next week). I'm crossing my fingers and hoping that the regression was slow, as they say a slow regressing tumor was a slow growing tumor, which means it was less aggressive and hopefully less likely to have spread... I'll take any relief I can get since I'm dealing with being on the brink of "high - risk for metastasis".

So after a lovely morning in his greatness' presence, I then went to my next appt. a heart scan called a MUGA which tests the flow of my blood out of my heart. I have to say this is probably one of my more favorite tests (if someone forced me to choose between the lesser of two evils) because I get a pillow, a warm, blanket, a TV, and I get to lie in fetal position -- my typical sleeping pose :). Well, this time it was just too much to resist, I fell asleep :) I guess my heart rate, which is normally fairly low (47-53 or so) dipped so low when I fell asleep that they had to come and wake me up because the machine wasn't working :) hehe. I think Jeff and Mom got a bit scared too b/c the tech tried to wake me up and I didn't budge for a bit, until Jeff got up and woke me up hehehe...

Then came test # 3 and the one I always dread, my liver MRI. Honest to god, I never knew that your liver was that important until this whole cancer thing came around. I always thought the only liver problems people had were cirhosis (sp??) due to extensive drinking. In any case, the test arrived or I suppose I arrived for the test, and was taken to the lovely room with the loud magnets. Downfall was this time I didn't have any music, just earplugs! I'm starting to wonder why I can't have someone in the MRI room with me, it's not as if its x-ray exposure like a PET or CT scan...it's only harmless magnets....perhaps I will ask in the future. In any case, an hour or so later and it was over, the only thing left to do WAIT. Definitely my favvvvooorite part. :/ and that ended the long day. Jeff toughed it out well, and it was very nice to have him there along with my Mom -- they are both troopers. I wouldn't want to be there if I didn't have to be!

Monday night was actually quite fun, though I was exhausted, Ry & Jackie and the pretty pretty princess Alexis came over for dinner and Jeff cooked. God knows he cooks 10 x better than I do, especially since I don't really cook or eat much hot food these days! I also got to see my friend Laura for a bit when she dropped by to pick up Andrea, so that was nice as well :) All in all the evening was quite good.

Tuesday was a bit tumultous... it started off well by getting a lot of rest the night before, and then it was off to work for me. I got a few things done and then decided to call and check when I would be able to pick up my reports from the scans the day before so that I could send them down to Dr. Sato. Low and behold when I called yesterday afternoon they told me the reports were ready and I could come and pick them up. Yikes!! I was sort of not quite prepared for that as I thought I wouldn't be able to get them until Wednesday.

So I drove home, and picked up Jeff to drag him with me to go and pick them up... had a slight little breakdown in the meantime but I think all in all not as neurotic as three months ago when I had to go for my last MRI. The analogy I gave (I'm still working out the wrinkles) is that imagine you are a normal healthy person, and every 3 months you have to go to someone who will tell you either (a) you are perfectly healthy, see you again in 3 months, or (b) you are dying, and most likely not live beyond a year. Now imagine you had to face this reality every 3 months...that's sort of what it's like getting these MRI results back. I know it may sound a bit dramatic, but really I think the only way you could ever be not shaken up by having to go get these results would be if you were totally and completely at peace and had acceptance of your own death and mortality did not frighten you. Well folks, I'm not there yet, and so when I'm sitting there thinking about (a) or (b) about to happen it scares the shit out of me! But the breakdown was only about an hour or so and then it was off to the Brigham to pick up the results. I had thought that I would not look at them until Jeff and I got back to my parents' house that evening (as we were going there for dinner), but when the lady handed them to me they were not in an envelope, so I just couldn't resist. I started skimming, and I could feel my heart beating in my throat practically and then I saw the beginning of the word "unchanged" and raced through the rest of the report that told me nothing but GOOOOOD news. The spot in my liver was unchanged, completely the same, and was said to be an FNH (as Dr. Sato had assessed it to be the last time I had a scan -- though I was still quite a bit worried). Hip - hip - hooray I say! Another 3 months of NED living (no existing disease) which will bring me straight through my 26th B-day and right to around Thanksgiving time.

All in all things have been hectic but great. Jeff has brought so much joy and happiness into my life and I'm very thankful and happy to add him into my fantastic support system that all of you, my friends and family, have already provided me with. I'm happy to be happy.

Next up is my 3 mo. chemo check-up with Dr. Sato next week and an appt. with the folks at Wills Eye Institute to try and get them to follow my case instead of Dr. G. Also at some point I'll be hopefully getting back the results from the eye tests on Monday and will post more when I know those.

Cheers to 3 more months all, and I hope you all start planning something big for my b-day now! :) hehe

Be well, love
Carissa

Sometimes it rains, but maybe there will be a rainbow?

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

New picture!

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

Sunny days

So, I thought I would do some positive posting for a change and that way maybe inject a little bit more happiness into my otherwise somewhat saddening blog (though I swear I was being upbeat while writing it!).

Things up here in Beantown have actually been pretty good for the last month or so. I am still working on sticking to my raw and living foods diet -- though I admit that I am not always 100% or even 80% with it for that matter (what kind of person would I be if I turned down smores while camping? that's just wrong...). But otherwise I'm sticking to it pretty well. I still need to spend more time prepping food for myself instead of relying on Whole Foods to be my own personal chef -- it's way too expensive to always be doing that!! I know some of you are interested in hearing more about the raw food stuff so I think soon I will try and include some recipes and/or little snipets of information that helped convince me it was a worthy thing to try.

As for the sunny days let me explain a bit. To start, I'm now in my 7th week of chemo and feeling fantttasssttiiic! (knocking wood as I say that). I went for my 1 month follow up with Dr. Sato in Philly a couple of weeks ago and he just cracks me up. While doing my physical he kept asking "do you have nausea/headache/fatigue/any other syptoms of taking a drug that is killing your body from the inside out?" my answer: NOPE! Now I'm not one to attribute anything 100% to anything else, but I definitely am thinking that the diet and the holistic vits/treatments are what's helping me through these times. For those of you who are wondering, no white hair yet, though I am on this until November, so there's still a chance. :) When Dr. Sato finished the exam after me telling him I felt good he said "Well....awesome" I feel as though it's a very chilly day in hell when oncologists get the chance to say "awesome" to their cancer patients -- so that was pretty cool. He did however give me a bit of a scare when while palpitating my liver (in english = knocking on my stomach to see if my internal organs seem to be full of tumors..i think?) he said "OH BOY" and I was thinking - uh-oh, then he proceeded to comment "Didn't that hurt?" while he pointed at my belly button ring - I love him but almost had a heart attack when he first commented! His other extremely amusing moment was when he commented that the Sutent trial he's been looking to do as adjuvant treatment was approved by the drug co. and he's now trying to get the protocol written for the FDA...and he turned to me and said "You are like the front runner for this (while by the way doing the running man!!) hehe..definitely made me crack up.

To date the only down side to the chemo is that my blood levels had started to drop a bit. My platelets (the blood parts that help you clot so you don't bleed profusely) are a little low so I'm bruising kind of easily and also if I get cut bleed a little bit more than normal. The more concerning bit though is that my white blood cells were dropping as well (and more importantly the neutrophils -- the subsection of white blood cells that are specifically designed to fight infection). These are both typical reactions for chemo patients, but ones I was hoping to avoid. In any case when they started dropping I rang up my holistic guy and said "What the hell? And what can we do?". He suggested I try a "detox sauna" saying that it would help release some of the toxins that could be supressing my immune system. I headed over to his office Thursday and sat in a small box sweating my ass off in 160 degree temps for almost an hour (it actually was pretty enjoyable though), and then crossed my fingers that when I went to my appt. w/ Dr. Friedlander on Monday that my blood levels would have stabilized or gone up a bit. Monday came and while chatting with my doc's assistant about my awesome and huge white purse she casually says "oh look you're blood results are in"...and.... (pause for dramatic music).... they were good! Not great, but good! The neutrophils had stopped their excessive plummeting and my white blood cells even recovered a little bit. I'm hoping to hit the sauna up again before I go back for my next blood tests after the 4th of July. Monday was a nice sunny day for me. I'm glad to not have had to stop the chemo, even if it would be for only a few days. So I'm hoping that my WBC are on the rebound and will continue to slowly creep their way back towards the normal range :)

In non-cancer news, Steve and I broke up. I think it's been a long time coming for us, though I am forever grateful for the amazing support he's provided me through these first few months after being diagnosed. I will never forget that. I don't care to go into too many details, but we are on pretty good terms for now, neither of us wants the other one out of their life, but at the same time we are not right together as a couple. I'm hopeful that we will somehow make the difficult transition from relationship to friendship with very few bumps.

On another positive note, mid-week last week I noticed that I had regained a smidgen of vision in the bottom part of my left eye -- now don't get all excited, I still can't see for shit, but I have noticed that I can now (in that area) distinguish color and shapes a bit more distinctly, and also I seem to have a bit more perception in my peripheral vision. I'm crossing my fingers that this continues to get better as the weeks pass, and that hopefully it means that the inflammation inside my eye is decreasing little by little.

I know this post is a little disjointed, but I had a lot of random points to share with everyone, so heres another one...

I am planning on running in a 5k in Philly the weekend of August 22rd (the run is on Sunday, August 24th). It is through the Lance Armstrong Foundation and is one of their nationwide Livestrong Challenge days (click here for more information). I'm attempting to put a team together (and for those of you who don't like to run, you can also walk the 5K) and will post here once I get a team name and register myself. I'd really love it if anyone who is able would come and participate. Their is no fundraising necessary, though I was thinking of independently raising money to donate to the Eye Tumour Research Foundation, started at the Wills Eye Institute in Philly by Dr.s Carol and Jerry Shields. The registration is $50, but includes a t-shirt and a waterbottle, and fun activities the day before the race and the day of. I was also thinking of possibly making eye cancer related t-shirts to give to everyone who wants to be on the team. Like I said it's still a work in progress, but I will keep you all posted.

K, I've got to run for now, off to my weekly support group, but I hope everyone is happy and well, I'm doing a.o.k. for now :)

love you all, I will post again soon.

More on hippy dippy eastern medicine and uncooked food (Part 2)

So, I've been a little slow in getting this second piece up here, but hopefully you all took that time to go and read some really interesting stuff on holistic medicine and raw foods :) j/k. Anyways, part 2 I think is pretty short and to the point.

After my diagnosis, I really thought that the best approach was a multi-faceted one and so I thought I would read a little into the world of immunotherapy and holistic medicine. I searched for a doc on my own for a couple of weeks, but really wanted to go to someone who I got a personal recommendation from, as I thought I'd feel more comfortable with someone like that. Luckily my Aunt recommended a guy who lives/works in central mass (actually only a few miles from where my brother and his family live). Dr. Jeff as we'll refer to him is a pretty kick ass guy. He started out as an M.D. working in a hospital in family practice I think for many years doing the whole western medicine thing. Then at some undisclosed point he decided that the western meds just weren't cutting it anymore and took a fervent interest in the world of eastern and holistic medicine. So really, for me, he is the best of both worlds -- a Dr. who understands everything my oncologists are saying and prescribing, yet at the same time one who knows that there are other underlying issues that factor into my immune system's deficiencies in dealing with mutating crazy cancer cells.

So I met with him shortly after I met Dr. Sato down in Philly and decided I'd add him to my arsenal. The first step was getting some background on my childhood and any exposure to different toxins. As it turns out there had been a pretty major thing in my past, though my mom and I forgot about it at the time we were with him, but there had been an EPA declared super-fund site (click if you're not sure what a superfund is) only a few blocks from where I grew up in W. Mass and I had played multiple sports on it, and also swam and played in the ground water that it has supposedly leaked into -- kinda creepy huh? Then we went ahead and I had a whole slew of blood tests done to check for any vitamin/mineral deficiencies that my body might be suffering from. Have I mentioned yet that I think it's completely ludicrous that you can have blood drawn for an oncologists purposes and everything can come back "normal" even though HELLO YOU HAVE CANCER -- that's not NORMAL! Anyways, these blood tests came back telling a different story, and one that quite frankly made a hell of a lot more sense to me.

Dr. Jeff and I went through the results and set up a system of vitamins/minerals and supplements that I should be taking to help even out, or rebalance my otherwise unbalanced body. For those of you who know a little bit about raw foods/optimal nutrition your body works best when it is in an alkaline state versus an acidic state, and my body was not very alkaline when I first started these changes.

Long story short, Dr. Jeff and I continue to work together trying to sort of decode the mystery of finding what missing link in my system allowed cancer to get through, it's an interesting journey. I find it very comforting and relaxing to have at least 1 doctor whose main goal is to help me feel good, energetic, healthy, and whole, and not to just attack the cancer cells, but to help rebuild a stronger body, stronger immune system, and overall stronger armor in my fight against cancer.

If anyone is interested in more details of my holistic experiences so far, or in raw foodism feel free to write/call/ or comment here :)

The wonderful world of Holistic Medicine & Raw foods (Part 1)

To those of you who know me you will probably be a little surprised to hear about my recent enthusiasm in the field of holistic medicine. I have never been much for investigating into this field, partly because I never felt a need to, and also because I was never as motivated as I have been recently to.

My holistic experience began when I read a book called "Crazy Sexy Cancer Tips" by Kris Carr (link should bring you to her web page). To those of you who are cancer survivors or who are interested in it you should definitely check it out, it greatly helped me. I picked the book up in the airport on my way to my business trip in Malta the week before I was due to start radiation. I'd heard a few people recommend it, and it's gimmick was that it was a book geared towards women in their 20's and 30's living with and fighting cancer - it sounded right up my alley! :)

I honestly couldn't put the book down. I think I actually finished the entire thing by the time I checked into my hotel in Malta less than a day later. So many pieces of her story rung true to me: the incurable cancer, the Dr. saying well you'll just have to wait and see, the feeling of wanting to do anything anything possible to combat our diseases. It was very uplifting to say the least. I also stumbled up the chapter in her book on health/food/immunotherapy (boosting your immune system to help it fight the good battle) and the idea of the Standard American Diet (acronym SAD -- how apropos) being something that can cause or at least allow disease to eat through your immune system.

From her book I first learned of what's called a "Raw and Living Foods Lifestyle", basically it is a raw vegan lifestyle. No meat, no fish, no dairy, no eggs, no wheat, no processed foods...and here's the bigg-o NOTHING COOKED (well at least not cooked above 112 degrees). She backed up her argument for why this type of lifestyle support building immunity and drowning out cancer cells with some pretty convincing facts, but her opinion alone wasn't enough. I dragged my mom and sisters out to a couple of bookstores the following weekend and bought about 6 books that all talked about the theory and facts behind why eating raw works. Of course there are countless stories of people whose disease essentially disappeared by eating this way, and those always help one who's desolate feel a little better too :). But I was amazed at the amount of chemically intrigueing information was available on the ways the body reacts to cooked food, to non-organic processed items, etc... it was enough evidence and made more than enough sense for me to add this to my repoitoire of armor in my battle.

I started a raw diet about two days after that, during the last week of February, I actually tried to start on Feb 26th (the day after I finished radiation), but sadly my Uncle had just recently passed away and his wake was that evening -- which in my family meant a nice big ole' dinner would help us put a bit of pep in our steps after the solemn evening. So I started the next day :)

So far (I'm giving myself a small pat on the back) I've been doing o.k. with it. By no means am up to doing 100% raw, but I'd say in a typical week its about 80/20 which is a considerable change for anyone. Though as my mom pointed out I do seem to have pretty good will power when it comes to diet changes in my life (for those of you who have seen me lose about 30-35 pounds since Jan 2006 and keep it off since then).

There are quite a few tasty places even in the Boston area to eat out for Raw Food, two of my favorites are:

Grezzo and The Organic Garden

Grezzo is an upscale gourmet raw eating experience and is located in the North End in Boston, and The Organic Garden is a bit more like a regular cafe serving sandwiches, smoothies, pizza, salads, and entrees etc.. up in Beverly, Ma.

More on the rest of my holistic stuff coming up next...