Tuesday, March 24, 2009

Hello there everyone!

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.


Monday, February 9, 2009

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

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,