All things considered...

Hello there everyone!

2009-03-24T16:13:00.003-04:00

Good afternoon all fellow blog readers,

I know I'm downright horrible at keeping you all posted, and at documenting everything that's been going on, but life certainly does get busy sometimes -- or all the time! :) This blog finds me well and back at work as of a little over a week ago.

Time certainly did fly while I was off, but I feel like I accomplished so many things that I had been wanting to do: I started growing my own wheatgrass, I juiced daily, I attended meditation classes and other relaxation classes, and I slept 8 hrs a night like I should be all the time. I also had the opportunity to begin reading (though I haven't finished!) some great books on how to cope with things. One is called "The Mindful Way through Depression" -- though it is NOT all about depression -- but rather coping through mindfulness practice with some of the most difficult and sad parts of life. The book comes with a CD that has guided meditations on it, and I really liked it when I started reading it, BUT I haven't read it in weeks now! I'm such a slacker on that end. I was also reading the "The Tibetan Book of Living and Dying" which I found incredibly interesting as well! I really do need to dedicate a little more time to reading, as it is definitely one of my favorite hobbies.

Towards the end of my time off a few rather important things happened: (1) Jeff took his MA bar exam -- we'll find out in May if he's passed! (2) I took the MTEL (Mass Teaching Licensure test) to teach Spanish in High School and (3) Jeff and I went on vacation for 1 week after we finished both of our tests -- oh yes and there was a high volume cancer week in there too.

I'm really excited at the prospect of being able to teach Spanish in highschool and really think I would love it. I'll find out on April 10th if I've passed the exam and have started finally applying to jobs as of today! So if any of you all out there know anyone who's looking for a highschool Spanish teacher in MA, please let me know! Being in Spain was amazing as well, Jeff and I had a really great time visiting all of my old haunts and favorite restaurants. And he took initiative as well and actually looked up a couple of new things, so I got to see the inside of the Royal Palace -- which I've never seen, and went to a very famous Tablao in Madrid to see Flamenco! I'm going to try and post a link to the slideshow he created, with commentary, of some of our pictures :) He's quite funny in them. Hmm ok I'm not tech smart enough to figure it out, but if you want to see them email me! Otherwise here is one of the best ones he took, it's in Toledo:

Hopefully you all can see that! All right well here's the link anyways and maybe it will work, click here.

So anyways, Spain was great, there were some crazy stories involved with us getting there and back, but I'll save those for another day. :) Unfortunately coming back was not as fun as we both had to go back to work the next day.

But let me skip back a little and update everyone on my scans and whatnot. I have officially finished my Sutent -- actually my last day was Monday, February 23rd. I wonder if I'll remember that for a long time, or if I'll forget? Anyways, I finished on Monday and had had my scans the Thursday before on Feb. 19th down in Philly this time at Center City Imaging, part of Jefferson Hospital. Since I was down in DE Jeff came with me all by himself this time around, and though I was a little aprehensive at first about not having a huge team of people with me, it turned out just fine :). Jeff and I acted as our usual foolish selves as we waited almost 2 hours for me to go in for my MRI ( not that that added to the anxiety or anything!!) We played tic-tac-toe, hangman, and some ridiculous imaginary game where we drew on a sheet of paper and the next person had to make the previous scene into a new scene but using some of the same items in it. It was very odd, but very funny :) We also sat at the kiddie table while doing all of this.

Anyways, we finally got in and Jeff was allowed to come into the MRI room with me, they told him that he could talk to me but that I wasn't allowed to talk back (b/c of the various breathing techniques you have to employ) -- I was suprised he didn't take more advantage of that! :) hehe. I also wore my "lucky" green St. Paddy's day socks my mom had given me since the big Irish Festival day was approaching. Scan went as normal and eventually when we got out we went out to dinner at the Cheesecake Factory -- they have very yummy salads and very yummy sangria. :)

Well in order to not have an anxiety-attack from looking at my scan report this time around we devised a new plan. On Monday morning on our way driving up to MA for Jeff to take his bar, we stopped at the Imaging Center and I signed to get the report. We had a pre-addressed, pre-stamped envelope already in hand and as soon as the lady handed the report over it didn't even touch my fingers! Jeff grabbed it, stuffed it in the envelope, and put it in the mailbox. The plan was to send it to our address in DE and then when we arrived back we would get it from the mail on our way to the Dr. appt's on Friday morning and not open it until about 1 hr before the appt with Dr. Sato. This way we figured I wouldn't feel like I was trying to read his face, and I wouldn't have tons of time to freak out if I thought something was wrong.

.... the plan worked - sort of! We arrived at the ocular oncologists bright and early 7:00am I think and while I was checking in my mom and Jeff (who was the holder of the envelope at this point) went downstairs to get coffee while I waited to be taken in. A few minutes later they came back up and my mom came and said "Everything's fine, I had to look" :) And she wonders why I think she won't be able to keep it a secret when Jeff asks my parents for permission to marry me... lady can't hide a thing! :) hehehe (don't be offended mom, it's not always a bad thing!) So I read it and breathed a little sigh of relief, though I was quite irritated that the report read that there had been no priors for comparison when I had handed the technician all 5 of my previous scans! Literally you can't even PHYSICALLY hand something over to people and expect them to get it, it baffles me.

Anyways, the rest of the eye appt. went pretty well. Turns out the fluid in my eye had dissipated all on its own and so I did not need to have the fluid removed with a nasty long needle into my eye. Unfortunately, that meant that the vision I had was pretty much here to stay. So I have limited "motion" vision in my left eye these days, but only when there is light. When it's dark I'm 100% blind in that eye --- but don't tell the DMV! Also, my tumor had shrunk a little bit more, though I'm still so confused on that end b/c I still have issues with the measurement that was taken the last time I'm there. So I've decided that I'm going to call it 1.8mm of shrinkage over the year and just live with it. I'm hoping when I go back in another 6 months that it doesn't shrink anymore and just remains stable for life, or maybe continues to very very very (like 0.1mm per 6 months) shrink. I also don't have any signs of other major damage to my eye, no internal hemorraging in the eye tissue, and my eye pressures were both about the same (13 in my bad eye and 10 in my other) -- they watch those to check for radiation induced glaucoma -- which my friend just had to have her eye removed for!

Then it was off to Dr. Sato's office. I think yet again I was his last appt of the day and I finally got to meet his PA Debbie, which was good. I said hi to June my little nurse buddy there at Kimmel and then Dr. Sato came along. He walks in and says "Well there's no bad news", of course we'd already known the report was fine, but the poor guy looked run down like you wouldn't believe! I think he may have just had to have given someone some bad news, hence his slightly more sad than usual self. There were a couple of things that came up, one was I had fluid in my lungs, and I had recently gotten over a bad cold, so I thought it was related to that, and the other was that I found out that I have an aberrant hepatic common artery (one of the arteries that leads to the liver is abnormal, though apparently fairly common). I'm surprised it hadn't been pick up before, but that's o.k. I did my typical inquisition of questions and we talked about my next steps. Up next I believe will be immunotherapy with GM-CSF an immune-system stimulating drug. It's something I would inject into myself daily and would need to be followed on a similar schedule to that of when I was taking Sutent. Side-effects are minimal if at all, though again there is no real PROOF that it will do anything. I'm hoping however that it will boost my immune system and kick it into gear, especially after having the Sutent slowly trying to take down my immune system. I should be beginning that fairly soon.

At the moment I am in the middle of a 9 day colon cleanse -- fun fun! I did one last year as well right before I started my chemo. Of course all done under the supervision of my holistic MD. It involved a 5 day liquids-only fast which I'm on day 3 of and feeling pretty darn good :) The fasting includes a very fiber dense holistic mix of things like ginger root, physullum husks, apple pectin, and a few other things. I have it every 3 hours and it more than satiates my hunger. Although I am already planning what my meals will be on Friday -- the day I break fast. I think this is a good period for me though to try and reset my "food" clock if you know what I mean. I do decent during the day with my raw foods when I'm at work or by myself, but have a very difficult time when out with friends, family, or Jeff. This is something I'm hoping to improve and by taking a few days break I think I may be able to get rid of some of my typical carb cravings (white bread from NYAJ and Bertuccis, and my favorite rice -- my two biggest weaknesses). Day 3 is almost over and I'm feeling pretty good about it. It's becoming a good exercise in will power as well b/c I tend to reach for food when I'm feeling frustrated, upset, overwhelmed, bored, happy, sad....hmm pretty much any emotion!

The end of this whole long story is that I am not due back for more scans until May 21st and that I am now "officially" back at work trying to stick it out here and do some beneficial things for this company before I hopefully can find my way out into a more fulfilling position as a teacher!

I hope this post finds everyone well and happy and I thank everyone again for the continued support, love, well wishes, positive thinking, and prayers as always. There can never be enough and I am always grateful to have so many people caring for me all the time.

Love,
Carissa

It's been a while...sorry for the wait! :)

2009-02-09T11:08:00.002-05:00

Happy New Year everyone,

I can't believe it's been two months since I've last posted. I keep thinking to do it, but then the thought escapes me or I think there's too much to say so I just won't say anything at all! :) But I am committed to writing this one and letting everyone know how things are going -- so if you're not ready for a long one then don't continue reading! :)

First off, belated happy holidays / happy new year to anyone I didn't get a chance to see or talk to around that time. My holidays were phenomenal this year. Since the final word that the scans were clear in late November I had been more than ready and excited to ring in the x-mas season and the end of the year. I was so grateful this year more than any I can remember to be healthy and happy with my family and friends. It's sad that sometimes it takes major life crises to make you really and truly realize how grateful you are for the people in your life. (Not that I didn't appreciate everyone before, but there's a special feeling to it these days!) X-mas was hectic with Jeff and I doing a split holiday, I spent X-mas eve and the few days before that down here in Delaware and then took an early as the sunrise train up to Palmer on X-mas morning to celebrate with my family (Jeff followed me up later that day and spent the remainder of the X-mas period with my family and I). As usual my parents and siblings all completely out did themselves. I still honestly wonder sometimes how there isn't a Santa b/c the sheer quantity and quality of the gifts we receive is just so incredible. I received so many thoughtful gifts this year, and so many useful ones as well! I wish I had pictures to post but I'm not sure where they are at the moment and I'm not sure where the cord for my new camera (X-mas gift) is. I'll get them here eventually. The best part of X-mas day though was the fact that we didn't have to rush around and take off to go to my Aunt's house as we have been doing for years! Instead we changed things around a bit and decided to have X-mas day at my parents house and had a lovely (and huge!) X-mas dinner that my dad and mom put together. It was so nice to be able to relax all day long with everyone. It helped that Katrina had gotten Rock Band for X-mas and the Wii so we spent quite a few hours pretending to be rockstars :) I like to think I can actually sing, and when I play on 'easy' I do quite well :) hehe.

Presents were bountiful and everyone treated each other very well this year, with very thoughtful gifts. Jeff and I exchanged "jewelry" as I got him a nice engraved watch, and he gave me a beautiful sapphire and diamond necklace -- quite nice :). I really do love X-mas, and not just for the presents, but because it gives you so many opportunities to spend long amounts of quality time with your family and significant others. It has always been one of my favorite holidays with my family.

In any case, shortly there after New Year's came along and Jeff and I were off to Stowe Vt for a ski vacation with 10-12 other people! We had rented a house a few miles from the mountain and I was able to go on my first ever ski-trip vacation. It ended up being a ton of fun, and I found out that I really love cross-country skiing! It's a lot of work, but it's amazingly beautiful, peaceful, and not nearly as scary for me as downhill skiing. Jeff is an avid downhill skier but he spent an afternoon cross-country skiing with me and we manage to do a nice 4 mile trail where there was a hot-chocolate pitstop along the way :) It was so serene there. I also had the opportunity to see my friend Kyle, who lived with myself and Andrea in Madrid when I was there the second time around, so that was nice it had been a couple years since I'd last seen her. Jeff and I had the most wonderful last day there, everyone else had left and we went out for a very tasty breakfast and then made stops at the Lake Champlain chocolate factory and also the Cabot Cheese factory -- delicious! And the drive was gorgeous as well. It's so nice to be able to essentially "escape" from time to time, we had very little access to TV, cell phones, or computers and it was incredible. Makes me wonder if I shouldn't do that more often? I think this was my favorite New Year's as well. Though I did miss the ball drop --- ooops! :) I am happy to say goodbye to 2008 and to welcome in the new year. I hope it brings everyone I know happiness and health, as quite a few people had a rough 2008.

And then I began my leave... I'm not sure if I had mentioned that before. But after my last breakdown following the Nov. scans I sat down with Dr. Sato and talked with him about needing to take leave. He was 100% on board and was surprised he said that I had not done it sooner, since I hadn't taken any time off of work last year. I don't think the timing could have been any better either. I've been needing more rest recently, and there were some major milestones coming up -- my 1 yr post - diagnosis mark, my 1 yr eye-appt (where hopefully I will be able to have them remove the fluid in my eye!) and the ending of my being on Sutent. My Dr.'s I think have been pleasently surprised that I have tolerated the Sutent as well as I have, with my body showing no signs of toxicity. Though I have noticed that my energy level has been much more zapped as the time has progressed. I've finally been able to sleep though and am now getting enough hours every night to feel rested when I wake in the morning. I'm sure that that is helping my immune system stay in high-gear. I'm a bit nervous about ending the Sutent. Part of me wants to be on it forever, and hope that it will ward of erroneous cells for the rest of my natural life, and the other part knows that I cannot possibly be on it forever. And as we always knew, there is no guarantee that it would even work, it's just a cross your fingers and think positive thoughts sort of thing. So I feel like ending this part of my treatment may leave me feeling like I'm not "doing enough" to fight my disease, and am worried that as soon as I stop crazy little cancer cells will start to accumulate in my liver. But I try not to worry about it too much, and am already thinking of a few things I'd like to do once I have taken a short break from finishing treatment. If my scans go well next week and I do finish my treatment on time (last day in Feb.) then I am planning to do a 1 month cleanse with my holistic Dr. before moving on to anything else. I think up next I really want to get into an immunology program. Whether it be immune-stimulants, or a vaccine therapy, I think that is my next path. Unfortunately there's not much brewing out there in the world of ocular melanoma along this path that I've heard of.

Speaking of ocu-mel stuff, I was so thrilled when upon my last visit to Dana-Farber before moving to DE I ran into Gregg and Sara, another young couple who are fighting ocu-mel mets together. They are so incredibly inspiring, and I always try to keep them in my thoughts and prayers as Gregg fights to keep his liver mets at bay. I am sad for them in the way I am sad for me, the possible chance of not growing old together, and not having children, perhaps not making it past next year..but they seem to always be in such high spirits, and so determined that it makes me want to be as well. The amount of research they have done and the interesting and new treatments they try just astound me. Gregg is blessed to have Sara, as I am to have Jeff. He told me that one of the things he'd like to do during this new year is to learn more about my cancer so that he can better understand what it is we're up against. I think that's pretty incredible. As my mom and I were saying not that long ago, 20o8 may have been a pretty cruddy year for me, but oddly enough I had one of the best and one of the worst things happen to me in the same year. I found Jeff and I was diagnosed with cancer. Life sure can be tumultuous.

So now here I am, temporarily living in DE with Jeff while on my leave from work (which ends in mid-March) and I find my days to be full to the brim and still not enough hours in the day. But I am able to do so many more of the things that I have been NEEDING to do for me since I was diagnosed last year. I am taking meditation and mindfulness classes at the Wellness Community in the Philadelphia and Wilmington DE areas (the wellness community is an amazing place that provides free cancer support programs to survivors and family / friends) and a few others as well. I've also been reading an incredible book, "The Tibetan Book of Living and Dying", which is a very good read on really enjoying living and focusing on 'today' a problem so many people (myself included) have. I'm always living in the past or the future and rarely focused on the present moment. I've also been able to have more time to devote to things like juicing and growing wheatgrass. I don't exactly have a "green thumb" for growing plants, but my wheatgrass seems to do o.k. :) I've also signed up to do my first half-marathon this May and will be doing it with the same team-name Jeff and I created for the Lance Armstrong LiveStrong Challenge race -- "Eye Believe in a Cure". Myself and my good friend Andrea are the team captains, and we welcome anyone who wants to join to please do so. There is a half-marathon, but also a 10K option and we will be running to raise money for the Eye Tumour Research Foundation run by Wills Eye Institute -- one of the leading Eye Institutes in the world and one of the few that dedicates time and money to research for rare ocular cancers. I will post more info about that as the race date gets closer and we start to get things a bit more organized. For now you can check race info out here.

I think those are the big things that have been going on around here lately. I'll try not to be as much of a blog slacker, I don't know how people manage to post every day or every week! I've always been bad at writing on a schedule :) Overall things are going well, and I hope they continue to do so over the next few weeks while I face yet again another scan period. Please keep me in your thoughts and prayers, as they are always welcomed and needed :)

Be well everyone,
love,
Carissa

Long time no write.

2008-12-04T10:49:00.003-05:00

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)

2008-11-05T14:03:00.002-05:00

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

2008-10-22T16:29:00.003-04:00

Check em out!

It's been a while...

2008-10-22T15:29:00.007-04:00

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

2008-09-26T12:44:00.002-04:00

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.

2008-09-10T13:10:00.002-04:00

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!

2008-08-20T17:03:00.002-04:00

Life is good.

2008-08-20T15:07:00.002-04:00

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?

2008-07-23T11:45:00.003-04:00

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

2008-07-21T18:09:00.000-04:00

New picture!

2008-07-21T18:07:00.000-04:00

Bah bah bah -- Good Vibrations --

2008-07-10T11:58:00.003-04:00

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

2008-06-25T16:27:00.003-04:00

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)

2008-06-16T15:25:00.005-04:00

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)

2008-05-22T13:18:00.004-04:00

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...

And the results are in.

2008-05-22T12:10:00.004-04:00

So obviously finding anything out on Wednesday was no-go and I honestly can't even remember what I did that evening to try and distract myself? ...hmm losing my memory already.

Thursday morning I was tense from the moment I woke up as anyone can imagine, knowing that today I would hear whether the news was really good or really bad. I know people say to me that I need to get used to the anxiety surrounding having scans done, or that I should be able to some how accept whatever results come in, but to them I say BULLSHIT. What 25 yo is ready to die? Or even less dramatic what 25 yo is ready to hear news that you have stage 4 metastatic cancer only 3 months after initially finding out you had any cancer at all? I'm going to go with "not many". Trust me, one of my biggest aspirations and hopes for this experience is that I will somehow manage to find a way to be at peace with myself. That may sound a little hippy dippy, but it's become the most crucial thing in my world these days. I don't have any regrets, which is a good starting point, but I still feel jipped that I may not have the opportunity to have a family, be married, buy a 1st house, all those things.. actually I feel more than jipped that shit pisses me off. So like I said there's quite a few things I need to reach a compromise on with myself. Like I need to learn at some point to be o.k. with dying before 90-100 years old (not saying that I will, but I very well could and this has made that much more clear). I've been trying to refocus on this that I feel are priorities in life for me, the things that will help me feel like I've done everything I've wanted to do, but its hard because just surviving these days takes up most of my waking hours. I know that sounds like oh poor pity me, but its not a calling for people to come save me, rather just how the days feel recently. I do feel lucky in that I have a very beautiful young niece whom I've had great opportunity to see weekly for quite a few months now, she is both a blessing and a remembrance of the things I want. Though I try to tell myself that if something happens and I know I won't have the chance to have children that maybe my brother will let me borrow her for a few months or however long it is they say I have left. Then I could at least experience what caring for a child and loving a child like your own would be.

O.k. sorry I went a little off the beaten path there, talking about kids always gets me a little teary. So back to Thursday. I came in to the office and luckily had a meeting scheduled for first thing in the morning. I apparently did not contain my anxiety as much as I'd hoped as my coworker approached me later saying he was concerned and wanting to know what happened (almost my entire office knows about the situation, which is actually a lot easier for me).

When I came back down from my meeting there was an email from Dr. Sato as follows:

On 5/8/08, Takami Sato wrote:

Your images were reviewed by our MRI specialist.

We concluded that the lesion in the liver would be a "Focal nodular hyperplasia (FNH) ". This is a benign liver lesion, frequently seen in healthy people. Based on your history, we would suggest repeating MRI in 3 months (this is already planned for sutent). Once you have all necessary tests, you could ask Dr. Friedlander to check the results. If he is comfortable, you may start med.

TS

Woot woot! Seriously this was the best, most relieving day I'd had yet. I was beyond myself so happy that they had a name for the mysterious benign spot and that it was in fact benign - yay!

So that meant I got to go in the next day (Friday) and have 3 heart tests done, and then meet with my local onc. Dr. Friedlander to review the heart tests and to get baseline blood work done. He said he would call me Monday afternoon and let me know the blood results and if all was well I could start that afternoon!

All was well, and I am now on day 11 of my oral chemo, Sutent. So far so good. The side effects vary with every person, as does every treatment that cancer patients receive, but can range from: upset tummy, fatigue, headaches, low white blood cell counts (the kind of blood cells that fight off infection and support your immune system), low platelets (the things that help your blood clot), anemia, chemo anorexia, high blood pressure, white hair, and a slew of other things. Some people have these plus others, some people don't have any, and I honestly don't think there's a guideline for saying "if you don't feel this by day x then you won't throughout treatment" -- so I'm just taking that one day at a time. I would say I am fatigued, but as my mom knows it's usually because I don't sleep and am constanly going - not from the drug :)

As for monitoring I'm the lucky gal that gets to go in every week to see her oncologist to get a few vials of blood drawn and my vitals done to monitor my body's reaction to the chemo. My poor doc, I seem to have white coat syndrome around him so my normally very healthy and low blood pressure (105/65 or so) skyrockets -- this past Monday (5/19) it was a whopping 158/92 I think the guy thinks I'm lying -- so I bought a digital blood pressure cuff at my mom's suggestions (good idea mom.) and have been monitoring myself at home/work where I am more relaxed, and low and behold, my bp is actually low. Must be all that running and eating of nuts and seeds.

Speaking of running, anyone interested in doing a 5k or half marathon? I've been dying to set an exercise goal so I can get out of my "do the elliptical" rut and think I could manage one or the other. There's a LiveStrong (Lance Armstrong's foundation) 5k in Philly on the weekend of August 23rd-24th that I'm considering, so if anyone wants to join I'd love to have running partners and maybe even a team. I might get even more inspired and make us all eye cancer t-shirts if you're lucky! :)

Next post, my tyrst into the somewhat wacky but very helpful world of Eastern medicine.

Waiting, and waiting, and waiting

2008-05-21T16:33:00.002-04:00

and waiting and waiting. Seems like it can be an eternity, but yet when the phone finally does ring I never want to actually hear what the Dr. on the other line has to say. I suppose that's a by-product of my "the glass is always half empty so that way if someone fills it up you're really happy" point of view.

So I waited. The scans were done on Wed. April 30th and I had an appt. w/ Dr. Sato on Friday May 2nd where he would have the "preliminary" results and we would be able to discuss my starting Sutent.

May 2nd was a pretty good day, or at least the beginning of it was. When I arrived and saw him he started babbling on about the protocol we were going to set up for Sutent and when I would come see him next. When I asked him about the results he said "oh we don't have the final report yet, but I'm not concerned." I thought o.k. that's good enough for me. Later in the day though after we'd left and started our trek back home I started to get curious, did they get the final report, what exactly did it say? So I called the nurse who handles my case and was told that I would need to speak to Dr. Sato himself about the results, and that more or less things were the same as they had been in my previous MRI. I wrote my doc an email (great guy too because he actually responds to emails) and he told me he would be in touch after the final report came in and to go ahead as planned getting the various heart and blood tests I needed done as baseline for starting the chemo. It was a stressful weekend.

Monday morning came and went, but by Monday afternoon I felt like I either needed a stiff drink or a few, two, three of my anti-anxiety meds (specially prescribed to help me supposedly be less anxious about having cancer) to get through the rest of the day. The waiting was killing me, so I called the place I had the tests done and was told that the final report had been completed. I set off from work to go pick up the report myself. Now, if you read the previous post where I went and picked up the report and freaked out because it had something on it, you could imagine my family's hesitance for me to go and pick this one up. Especially b/c there was a slightly different circumstance surrounding my MRI. Dr. Sato had instructed me to get my scan done at the same place as I had the previous time, but because of the squished and expedited time schedule I had to get it done at the place that would take me the soonest, which was not the same location. Due to this I was warned that sometimes different machines/ different radiologists measure and see things differently , blah blah blah. So my mom kept reminding me that if I picked up the report I should keep that in mind. She also insisted that I wait for my father to meet me at the hospital before reading the reports (luckily he was working near Boston that day). So he met me, we got the reports, and I got depressed.

The MRI showed that the area in my liver was measured at 6.5mm this time compared to the 5-5.5mm it had supposedly been in March. My mind obviously settled into the worst case scenario, metastasis to the liver a mere couple months after my initial diagnosis. I felt myself for the first time screaming about how unfair this all was, that I couldn't even be so lucky as to have a little time off from the intial diagnosis before it becoming stage 4 battle for my life gladiator style. I was pissed, depressed, heartbroken, and utterly just broken, period. I felt like I hadn't even gotten a chance to fight and the fight was already getting harder. Like I was going into it with a severe handicap.

My dad tried to be reasonable with me and explain that we really didn't know anything because we had to wait for Dr. Sato and his team to compare the MRI cd's and determine whether or not it was true growth or just the x factor of having been done at a different location. I figured I would hear from him Tuesday.

One of the most positive things that has come out of this whole experience occurred that night though, I got to spend unwarranted/uncounted/and completely uncensored time with my dad. We talked about things that I'd never thought to talk to him about before, philisophical crap and real stuff, we talked for hours about the meaning of life and what we're each meant to do. I quizzed him on how he dealt with my illness and what made him able to cope since I was having such a hard time finding any ground to put my feet on. Don't get me wrong my dad and I have always been close, but this was different, this was me sharing an emotional part of myself and being able to share that with him was incredible. Obviously cancer at a young age brings about a lot of ideas of mortality much sooner than I think most 20-year olds would consider, and it felt relieving to discuss things with him, instead of glazing over and talking about other matters.

Tuesday alas came and went as well, with no word from the doctor's office. I reached out and asked all my friends, family, extended online support family, to keep me in their thoughts and prayers in this difficult time.

Wednesday morning the Dr. office called, and as I held baited breath the nurse said "Could you tell me where you got your MRI and the phone number? Dr. Sato wanted to see the final report."

WHATTTTT! Here I was ready to contemplate my tombstone and he hadn't even gotten the report yet! I sent him a little email inquiring as to the delay and was told to fax the report over to his personal line and that he would call me on Thursday after looking at the results and comparing the cd's.

Yet another day to wait.

I love having a plan.

2008-05-21T15:49:00.003-04:00

Calling all Type-A cancer survivors out there: Hi! I'm one of you. I wondered when I got diagnosed if my personality type would change drastically as I have always been a type-A likes to have things be perfect and organized type of gal. But to be honest, that part of me hasn't much changed, I do think I try and be less "perfect" about a lot of things these days and go a little easier on myself, but when it comes my health care I am definitely and gladly so still anal.

So, like I said began my mission to put together an aggressive team of people that could help me do everything I can to beat off this "beast" as they say in my list-serv group.

I took a few-pronged approach which I still consider to be the right path for me for now. There's both a more eastern/holistic approach and there's a kill the suckers with serious toxic western drugs approach -- both I consider valid and helpful in their own right.

Step 1: Find a Dr. who is aggressive and knowledgable about this disease and get him to take me on as his patient: check done. After my less than fulfilling experience here in Boston and my extensive and scary research I sought out a Dr. in Philly called Dr. Takami Sato. He is one of the leading (and few) metastatic uveal melanoma oncologists in the US. They're not exactly run of the mill types of folks. In any case I had read quite a few reports of trials/research he had done and was utterly impressed by the fervor that he took on in trying to find a cure for this disease once it had spread. I also got numerous references for him from my online list-serv group "Ocu-Mel". I immediately contacted his coordinator (during my rehab from eye surgery week) and requested an appt. She said he would be happy to see me and we set a date for March 3rd- exactly one week after my last radiation treatment. In the waiting time of going to see him I compiled a list of questions, and of possible adjuvant (read: proactive before the disease spreads) treatments to bring with me to this appt, wanting to be prepared.

My March 3rd appt could not even be compared to being in the same ball park as the one I'd had with Dr. G. Dr. Sato sat down with my mom and I for 3 HOURS UNINTERRUPTED and answered any and all questions we had. He discussed possible treatments, a few things to look into, my "real" prognosis, and developed a very aggressive scan schedule for me to enact when I arrived back home in Boston. He agreed to be my doc and told me he would back me in pursueing any of the options I chose (YAY!).

Side note: For those of you who are lucky enough to not really know what a "scan schedule" might entail it means getting regular MRI's/Ultrsounds/PET/CT scans all of which are diagnostic imaging and can be used to detect tumors. They are considered light years more accurate than waiting for your blood tests to come back abnormal (which is the protocol Dr. G. uses to determine whether or not you have had metastasis --boooo to him). You could potentially have a 10cm tumor in your liver and have normal blood tests. But you could not have a 10cm tumor in your liver and have it not show up on any imaging tests.

I left Philly feeling hopefully for the first time since being diagnosed, and also felt determined -- much different from the somewhat depression I'd slipped into over the previous weeks reading countless stories of people constantly dying from this disease -- or so it seemed. I came home and on the drive back with my mom wrote up a "Plan". The plan had a lot of detail, but I will spare you those.

Step 2: Start getting scanned regularly. Dr. Sato had suggested an ultrasound/MRI of my abdomen every 3 months for the first 2-3 years post my initial diagnosis. Additionally there would be semi-annual chest x-rays, and blood work. I was to get my 1st MRI ASAP and let him know the results.

That was when the waiting began. It really sucks waiting. That is a massive understatement, but unless you are in a situation where someone is about to tell you whether or not your battle for life will be exponentially harder or just that of the average cancer gal I'm not sure you would understand. There should be some way to put people into a temporary coma or something for the few days/week you have to wait for results to come back, that way you don't die of anxiety (or "scanxiety" as some say) before actually getting your answers.

So I went for my 1st MRI and ultrasound, somewhat chipperly as Dr. Sato had intuited that he was fairly sure everything would be negative, so I tried to remain positive. The scans were on Friday March 7th, and on Tuesday March 11th my PCP called and left me a message saying "I got your results, by and large everything looks fine." I thought PHEW! and went to the office to pick up a copy of the reports and the cd's for myself (a little trick I've been taught and find necessary to keep my sanity when dealing with 20 different dr. offices..) . I picked the report up and started to read... Ultrasound: NORMAL, MRI: not so normal. There was a small approx. 5mm large area on my liver that appeared to be benign given its shape/location/whatever other diagnostic tools radiologists use to determine tumors from benign stuff. I of course FREAKED OUT. I called my PCP back screaming "How could you say this is NORMAL?" took the day off work, had my mom come out to hold me as I thought to myself I can't believe it's already metastatic...DAMN. Skip ahead.. after another painful week and a half or so, and a PET/CT (ordered by Dr. Sato to apparently "ease my mind") I received the good news on March 18th that the spot was indeed benign and that my full body scan (the PET/CT) was NEGATIVE. A small celebration took place in the shape of a big dinner at Texas Roadhouse w/ grilled chicken (my old fav), rice pilaf, and a yummy baked potato. Not to mention some delicious cinnamon rolls.

I was told the spot was most likely a hemangioma, a small FNH (focal nodular hyperplasia) or some sort of vascular deformation. (although I know what these mean, I'll leave it up to you all to investigate their definitions if you so desire).

Step 3: Find a local oncologist who would basically be willing to listen to and do Dr. Sato's every word. Much harder than it sounds, and it even sounds hard. I basically had to forgo going to anyone in the MGH/MEEI community because they all sided with the infamous Dr. G. and that it wasn't useful to do liver scanning since there's no proven treatment for liver metastasis (to me that seems like saying 'well since we don't know the cure to any of these things, we'll just stop trying'. 'what you have a liver tumor?' I can't hear you, I'm blissfully ignorant!') -- yeah not going to work for me. So I found a great Dr. at Dana Farber who was willing, though he constantly repeats "this is not what I would do (well dude you wouldn't know what to do actually, b/c you treat skin cancer not eye cancer!), but I will support you and follow you anyways". Like I said great guy, at least very open to working w/ Dr. Sato and it helps that Dr. Sato is well known in the melanoma community to say the least.

Step 4: Get set up with some sort of adjuvant treatment. My first approach was a vaccine therapy trial at Sloan Memorial Kettering (which if any of you are CM patients and are curious about I'd be more than happy to share the details). Unfortunately you had to have a specific tissue-type to be able to participate in the trial, and I did not. Bummer. The next try was to start an application for a fairly new chemo drug Sutent which was being used in a few clinical trials for ocular melanoma. Dr. Sato was currently using it, but only in patients who had metastatic CM and a guy on the West Coast was using it for adjuvant treatment (though it was piggy-backed with Cisplatinum and Tamoxifen) for high-risk for spreading patients like myself. The suggestion had been to try and get Sutent on my own, off label through either my insurance co. or through the drug company and Dr. Sato would create the protocol for me to follow (as he was/still is considering an adjuvant trial with Sutent for high-risk patients, given the promising results seen in the current trial).

...insert Jeopardy waiting theme music here....

After almost two months of waiting (started the application March 11th and received my first bottle on Tuesday May 6th) I had finally gotten Pfizer to provide me with 6 months of treatment: FREE! The drug typically costs $4,000 per cycle for the dosage I am using - crazy huh? I of course had to go through the whole lot of having my insurance deny it a few times before being able to actually apply for assistance through the drug company, but for now that is all set.

Now the only thing that was waiting between me and starting this treatment was that Dr. Sato wanted to do a follow-up MRI of my abdomen and Chest CT to have the most accurate and close to starting date of Sutent baseline images (i.e. making sure I was still actually without any metastatic disease). Time for another freakout. I was not ready to get another scan, I had tucked that little scanxiety box away in a corner to collect dust bunnies and cobwebs until the end of June when I thought I'd be going for my next set. Unfortunately, the decision was either have the scans now and start the Sutent if everything was clear, or wait until June for the scans and if clear start the Sutent then.

As I was convinced by my many friends, family, and of course loving bf that it was absurd of me to come this far to push so hard to be proactive and then pussy out, I decided to go ahead and get the damn scans...waiting yet again for results.

Abridged version for your sake :)

2008-05-21T15:16:00.003-04:00

I thought I'd be kind and lump some of the following into a more condensed version so that people don't get too bored with the intricate details (myself included). Though if anyone is wondering about more details, feel free to leave a comment or email me and I will gladly bombard you with the minutia of things.

So, after that highly un-impressive visit with my Dr. at MEEI (let's call him "Dr. G." from now on). I went home and put my over $200,000 worth of education brain to work and threw myself into research. I found statistics, articles, two - exactly - two support sites for people with Choridal Melanoma, and lots of info about the eye and cancer that I never had any burning desire to know before this.

In a nutshell, Choroidal Melanoma is the most common adult ocular malignancy, however it is also one of the most rare cancers. It's incidence is only 6 in 1,000,000 (that's right 1 MILLION!) people-- lucky me! Not only that but the median age for a person with this disease is somewhere between 60-70 years old (NOT 25!). It also unlike many cancers in that it is not unanimously "staged", instead it is usually graded by "size" as one of the determining factors in a patient's prognosis. The sizes range from small - large with no specification for those of us who are X-small or X-large. I fell into the medium/large category. A large tumor is described as one who's largest tumor diameter is 16mm or greater, and/or who's height is 10mm or greater. I was 16.1mm at the largest, but only 6.5mm in height. Lucky me yet again. I was told by one of the dr. that if this sized tumor were anywhere other than they eye they would just go in and "pluck" it out and be on there way, but the eye is a much different story.

There are three well known types of treatment for choroidal melanomas, though various other methods exist as well : enucleation (removal of the eye), Plaque brachyotherapy (or plaque radiation), and Proton Beam irradiation. I chose to have Proton Beam, though I'm not sure it was actually an active choice so much as being in the right location at the right time. I still believe, after all my research that PB will give me the best odds of having no recurrence in my eye, and also of hopefully some day (when the fluid in my eye drains) regaining some of what is now lost vision.

The surgery for the rings (which guide the radiation machine) was fairly painless, I've definitely experience much worse pain when I had my two ACL reconstructions. And I was able to attend a business trip in Malta (Feb 13th-18th) inbetween surgery and starting my radiation. The trip was both a good distraction and a horrible idea. I was so lonely being that far away from home, and a bit sick from the lack of sleep and nerves about the upcoming treatment and about ya know having cancer at 25. However it was a good thing to be at conferences all day and also my boss and coworkers were very impressed that I showed up and I'm glad I did as I think it gave me more "street cred" :) when I needed time after the radiation.

Oh a little more about my learning: the 80% no spreading was a load of crap, and I later discovered that in fact my chances were much closer to 50/50 over the course of my lifetime -- with no way to tell where I would fall in that spectrum. Now some of you may be thinking, "if it spreads you just fight harder... go-team-go", that's great positivity, buuuuttt not all that reassuring facing the stats of my disease. Seems that choroidal melanoma (CM) spreads 1st and most likely to the liver (about 85-90% of spreading shows up here first), then to the lungs, and finally anywhere else. Now the downside to all of this (cuz ya know having cancer itself isn't all that bad, it's only bad when you can't guarantee a win), is that metastatic (the fancy word for cancer that has spread) CM doesn't respond to most treatments currently developed for the killing of cancer. hoo0-rayyy (imagine my sarcasm if you will..). Apparently CM is a very resilient little bugger once it spreads, and although there are many valiant doctors and pioneer patients trying all sorts of different treatments there is no known protocol for treating it once its spread. That said, if it spreads and you do nothing the average life expectancy is 2-8 MONTHS. Yeah, that's also very not cool if you want my opinion.

So anyways, after accumulating some knowledge and finishing radiation (I only lost a few eye lashes, have a small burn, but have lost most of the vision in my left eye) I saught out a Dr. that would be willing to pursue an aggressive proactive plan to try and combat this aggressive cancer.

Day 3 of visits: The final official word.

2008-05-21T15:06:00.002-04:00

"You have a malignant choroidal melanoma. We need to do radiation therapy to treat it, and then you will come see me twice a year for 5 years and once a year after that for checkups and that is that" (imagine a pompous old man rubbing his hands as if to say "and I'm done with you- NEXTTT").

That was the extent of my diagnosis day. My Dr. in Boston, who will remain nameless as I still need him to be my ocular oncologst (they're a bit hard to come by...) despite my not so nice feelings for him.

The day was jam packed with testing, and more testing, and me asking my mom to entertain me and her responding "what do you expect me to do, dance?" (To which I replied 'yes' b/c quite frankly waiting at the oncologist's office is not exactly my idea of a relaxing morning and anything to distract me would have been nice right about then.) The Dr. answered very few questions, though his team was much nicer. I gleaned what I believed at that moment to be "accurate" information 80% chance it WOULD NOT spread in the 1st 5 years and then a dramatic decrease thereafter. I walked out feeling slightly less defeated, despite officially now having to sign my name Carissa Caulfield, cancer patient.

I was setup with all the items I would need to get started on the fast track to radiation. I would have eye surgery to place tantalum rings around my tumor on Feb 5th, and the would spend two weeks recovering before beginning Proton Beam radiation on Feb 19th-25th -- that's right folks 5 days of radiation only and that is by protocol IT, ALL YOU CAN DO, ALL YOU SHOULD DO, just go home and be normal after that -- but don' t forget your semi-annual blood work.

WHATTTTTTT!!!!!!!!?????????

That definitely was not going to fly with me. That night when I got home began my extensive (and I mean exttteeeennnnsssiiive) research into the world of uveal melanoma. Learn some of what I've learned in my next post...

Day 2: Final word, but not officially

2008-05-21T14:52:00.002-04:00

The next morning my mom, my boyfriend, and I headed out to see this retinal specialist here in Boston. When we arrived I went through a similar procedure: dilated eyes, pictures, exam... except this time this Dr. (who was a complete and total sweetheart) gave us the bad news. He believed it to be a malignant choroidal melanoma. ::Enter scare end of life music, tears, and loud sobs:: all by me of course. I think my mom and boyfriend were both in SHOCK. As was I, but I was also bawling my eyes out. Outfit: A previously "lucky" outfit, stretch black pants, black turtleneck, and comfy empire black/white/yellow cotton dress, w/ black peep toe shoes. This outfit has pretty much been banned from my wardrobe.

The Dr. tried to lift my spirits a bit by saying that the treatment at MEEI (Mass Eye and Ear) was the best I could get for this disease, and that we could test for TB and maybe that might come back positive (a good thing at this point, as it would indicate an infection behind my eye). Alas though it was not TB and is in fact cancer.

The rest of this day was fairly blurry as well, I know I had a chest x-ray and bloodwork done to see if it had spread. Though from what I know now that was completely insufficient for an initial testing.

I retreated home to my parent's place, and then went to Maine for the weekend with my mom, bf, littlest sister, and aunt to try and get a little peace of mind before the actual "final diagnosis" day on Monday when I would meet with the Ocular Oncologist at MEEI.

Mind you at the time my family had decided it would not be in the best interest of my younger siblings to tell them that it was cancer, at least not until after we had the final word. So the weekend was spent trying not to say that in front of my younger sister.

It was a pretty teary weekend as my emotions ranged from that of "I can beat this thing, I will beat it down! I am healthy I can do anything (this happening both when I was a bit intoxicated, and also when I was running -- nothing like fresh air, the ocean, your body working hard, to make you feel alive!!) to I'm going to die soon, I'm sure it has spread, I probably don't have much longer, I want to quit my job and have kids now! etc...

I remember my most distinct thought when the Dr. told me what it was, I didn't feel regret for anything in life, I didn't have a list of "I wish I had.... or I wish I hadn't ..." and I was very very proud of that, I did however have a stabbing pain in my heart that held my desire to want to be married and raise a family. I don't know when this desire became so poignant, but it did, and it was there being threatened by this awful ridiculous disease. I'm still trying to come to terms with this...but more on that later.

The night it all went awry

2008-05-21T14:35:00.002-04:00

A fairly ominous sounding title no? I figured that since I always get asked the question "How did you first notice?" I will put the story down in writing.

Jan 21st, 2008: Steve and I went out to a kitchy little place in Harvard Sq. called "Casablanca" for one of our "date nights" and to celebrate our anniversary. We had been on very good path recently, with things in the relationship really starting to look like they were moving ahead well, and we felt closer than we had in quite some time. The dinner to say the least was fairly forgettable, though the company was not. We chatted about buying/looking at houses, starting a family, getting married, all the things we typically discuss when things are going well with us :) The night was lovely, though short-lived as it was a Monday and we were both zonked, so we headedhome shortly thereafter. I think I will always remember what I wore during this first week of being diagnosed. Outfit: Knee-length green silk halter top dress, with my sparkly silver cardigan and silver open-toe high heels -- I tend to associate clothes with events I think (i.e. lucky clothes vs. not-so-lucky clotes).

When we arrived home I went to do my usual get ready for bed routine -- you know remove makeup, pin back hair, etc.. except that when I went to wash my face and was washing off the makeup on my right eye I noticed that my vision with my left-eye was all screwy. The best way to describe it is it looked conical, as if everyone was in a fun-house, or at least the tops of their heads were. I immediately panicked, and Steve immediately tried the usual "I'm sure it's nothing, come to bed, go to the Dr. in the morning" routine, as I can tend to be a bit of a drama queen. In my gut that night things didn't feel right, I had a hard time sleeping and was utterly disturbed by this visual defect. I woke up early and made the earliest appt. I could to see my PCP.

January 22, 2008: Outfit: Pink tufts hooded sweatshite, white tank, white shoes (that my mom hates even though they're very cute) and fav. pair of comfy jeans -- though I hate jeans in general. I didn't even shower that day, just got up, dressed, and went in to see the doc. I had just gotten over a severe case of bronchitis and was somewhat hoping this could be related to that...but highly doubted it anyways. So I went in, the NP took a look at my eyes and said I think you should see our Opthalmologist because she couldn't find anything wrong with me. Next step was getting shipped downstairs to the Opthalmology department (mind you this was the 1st one I think I'd ever been to as I had always had 20/20 vision). Whether it was luck or dumb coincidence my mom and sister happened to be driving towards Boston to drop my younger sister back off at college that day, and so my mom - who was in the loop about all these appts. - suggested they come and wait with me..it was a good thing they did.

I saw the Opth. and she dilated my eyes, something that is now part of my daily routine, did an eye exam and took pictures. She told me she saw a "mass" pushing on my retina and that was what was causing my vision disturbance. Looking back now I'm not sure why I didn't feel my stomach drop when she said a "mass" was there, but I guess my mind had not jumped to cancer. Though it didn't take more than 5 minutes for that to happen. She referred me to see a retina specialist the next day and told me ultimately I would end up seeing this guy at Mass Eye and Ear -- the Boston guru -- as you would have it. I was walking out, obviously disturbed, but not devastated because she told me the various benign things it could be and didn't mention cancer. However, as my luck would have it, as I was passing her office I saw she had just pulled up the pictures they had taken and she told me I could take a look. I walked and and when I saw it my heart dropped, I knew it was cancer...

The rest of the day was a horrible blur, lots of crying, lots of thinking about dropping dead tomorrow, about never being able to have children, about feeling extremely anxious for not having a real diagnosis yet despite knowing in my heart that it was malignant.

Thus began Day 1 of my new life with cancer.

A little about myself first

2008-05-21T14:01:00.004-04:00

To all you lucky people who have found your way to my blog, welcome and hi!

I've never been very good at writing or journaling, so this may be a disaster, but quite frankly I'm writing this for myself first and foremost and those who wish to read may do so at their own discretion. :)

Like I said, my name is Carissa, I'm 25 yo and living in the wonderful Boston neighborhood known as Somerville, not a bad place at all. I'm finally in my own one bedroom apartment, which is quite a change for me since I grew up as the eldest of 5 living in a raucous (but very fun) house with 7 people and multiple pets.

I won't go on too long, as I think most people who read this will already know me, but just in case...I grew up in lovely Western Mass, and had a pretty great childhood. Played tons of sports, danced, had lots of fun and exciting birthday parties, awesomely supportive parents and a pretty smooth sail through my young adult years. Of course there were the typical blips: arguements about my mom disliking my boyfriends, or lying to be able to sleep over at a "co-ed" party when I was in HS, but really not much out of the norm I would say. I did however spend my entire young adult life working to be the best little perfectionist I could be (a character flaw and a blessing at the same time) and ended myself up at Tufts University out near Boston. I did a double degree in Economics and Spanish (spanish being a life-long love, and econ being a newly discovered passion) and graduated having done pretty well for myself in 2004. After a futile, and in all honesty not very aggressive, job search I resigned myself to applying for Grad school, something I knew I wanted to do, just ideally not right away. I got accepted at Tufts for a Masters in Econ, and at the same time got accepted into a program for Teaching English as a Foreign Language (TEFL) that would commence in Madrid, Spain. As many of you know I spent about 7 months in Alcala de Henares, a small suburb 30 min. outside Madrid, my Junior year of college and fell IN LOVE WITH SPAIN!

So after much deliberation, I deferred grad school packed up a few items, deceived customs into thinking I was only going for 3 months, and moved to Madrid with one of my best friends from college, Andrea, and another girlfriend Kyle. The year was amazing! I missed home, but loved Spain, and to this day still keep in touch with a tight group of people I met and taught with there -- though we suck at trying to pull together reunions.

After that fun and exhausting year away I came back to do my MA. I started in 2004 and finished in 2006 and the years in between were arduous, and nothing like what I had hoped...but there was a light at the end of the tunnel (other than the MA attached to my resume), which was meeting and gaining more incredible friendships which I still have today :), so all was not lost.

Then it was time to enter the real world...something I don't much enjoy in terms of being a 9-5 slave, but I suppose especially now that I NEED insurance this is an evil I must endure. So I've been doing that for a couple of years now. One of the few positive things about my job has been that my boss and coworkers have been amazingly understanding throughout all of this.

So outside of these "normal" stats about who I am here's a few other tidbits about me. I love my family first and foremost. The original 7, now 9 of us, are extremely close despite all of our differences and I would not change a thing about any of us, or our experiences growing up if I could. I continually find myself beyond blessed for these people in my life and for how much strength,love, comfort, laughter, and support they provide me with. They are my rock.

Outside my family, I've got great friends, though it seems these days they're scattered all across the world and so it's a bit hard to physically "hang out" with them, but I do what I can when I can to visit.

As for hobbies, I used to love to play soccer, now I love to watch (but not on TV!), I like reading (but mostly mindless fictional pieces either about FBI espionage or chick books about shopping/marriage and the likes -- hey I think I did enough "intense" reading during my Masters to last me quite a few more years). I also love being by the beach, not necessarily on it, but definitely by it, and love running on the beach when I get the chance. I'm a dog person at heart, though due to my small living space currently have a very cute and lovely kitten named Sammy -- but I hope one day to have a big ole' husky :). And I guess my other big passions are doing anything outdoors (though I do despise nasty little mosquitos), and running - lots and lots of running.

I think that's enough for now...

be well and be happy.