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
Monday, February 9, 2009
Thursday, December 4, 2008
Long time no write.
Hi everyone!
First off I wanted to thank everyone for all the positive thoughts and wishes, prayers, chanting, etc :) that were sent my way during my recent scans. I know it has been a while (almost a month!) since I have posted and life as usual seems to fly by without me really noticing! November was chock-full of birthdays in my family with 4 out of the 7 of us having them that month! It is nice though to have 4 excuses to get the entire family together and eat cake and celebrate. And it's entirely more hilarious now that we've added the obligatory birthday hat to the whole mix! :)
In any case November was scan month and surprisingly enough I was not as anxious pre-scan as I have been in the past, though that's not to say I wasn't at all. I actually had a horrible scan report nightmare a couple of nights before that basically was me receiving bad results from the liver MRI and being told I had metastatic disease. It was very creepy... in any case, the day of scans arrived a mere 12 hours after I got off the plane from being at a conference in Ottawa Canada - eh. :) Jeff was a sweetheart and took the day off work and flew up on Wednesday night so that he could be with me on Thursday. My family also pulled their amazing stunts and spent the day with me as well with my dad taking the morning shift and mom the afternoon. It's nice to at least never really be alone in this. Anyways, off to the MRI place at 7:00 in the morning (and YES I did go running before we went) for my much anticipated liver MRI. This time I finally got up the nerve to ask why it was that a family member couldn't come into the MRI room with me, as it's only magnets and not radiation like CT's or PET scans. And lo-and-behold you can have someone with you! One person was allowed, so I left that decision up to Dad and Jeff and Dad was the lucky winner. So in we went. I at least come a little more prepared now and bring socks so that my poor tootsies don't freeze off while I'm in the sub-zero (almost!) room.
45 minutes later we emerged and were told I could actually just stick around and have my chest CT done at B&W's asap if I wanted to instead of getting it done at Dana-Farber (as I was supposed to later that day). So we stuck around and then had that done as well. Then downstairs to wait for copies of the CD's to Fed-Ex down to Philly for Dr. Sato and team. Amazingly Jeff and Dad somehow managed to fall asleep while waiting in the medical records room while I busily sat there re-organizing a mound of medical papers. I really need someone to organize them for me, and to also help me out with research and documenting it all, any volunteers?? That's a big project of mine. So afterwards it was out for some food, finally, as I wasn't able to eat before the scans and by the time we left it was about noon. Then the fun part....waiting.........
Waiting is not as fun as it sounds folks. And I am not a good waiter. I am impatient and relentless. I called B&W's hospital at 3pm to ask them if they had the MRI report from that morning's scans. They told me they had the CT results, but no MRI. I decided, well let's pick up the CT results anyways and then we'll drive Jeff to the airport, and then pickup the MRI report in the morning before my 9:30am appt. w/ Dr. Friedlander at Dana-Farber for scan followup. When we got there, literally just as I was signing for the CT, the guy says "oh looks like the MRI report just came through, do you want that too?" Do I want it, NO not really!!, do I want to have it so I can send it along and end the anxiety period YESSS!!! So I get the report. Jeff came inside with me and as we are walking out of the room I can't resist and start to read, much to my horror. The first sentence says "We see 4 focal liver lesions." OK NOT A GOOD START!!! 4?!!! Since when were there 4!! Freak out time. I'm not even sure that I finished reading the report the first time I looked at it. I know I did begin shaking and I turned to Jeff and told him that we shouldn't see each other any more and we couldn't be together -- SORRY HONEY! It was just my nerves talking, well that and the idea that I would hate for him to feel pressured into being with me if I knew I was stage 4 and most likely facing a near term death sentence.
Post shaking we went back out to the car where my mom was waiting with long-drawn faces. I gave her the reports and started breaking down. As would be the pattern for the entire weekend. As chance would have it the nurse from Dr. Sato's office called me regarding something unrelated just maybe 10 minutes later and when asked what was wrong I spit out the whole story in one deep depressed breath. She was a complete doll and told me that if I faxed the reports over asap that she would get them to Dr. Sato for him to get a quick look at in the morning (even though he sees patients all day on Friday and only reviews cases on Mondays), and that she would call me afterwards and let me know what he said. That resulted in an evening of heavy imbibing, sorry liver I know you have been taking a beating lately, and trying to drown out some of the anxiety and sorrow. Friday I took off work as I was completely incapable of doing anything and focusing on anything. I also skipped out on my Dana-Farber appt. (which I feel a bit guilty about considering how good Dr. F. and Angie have been to me)...but I needed to. Then we waited some more...waited until we heard from June (the nurse) and was told that Dr. Sato looked at the and thinks they are benign, but needs to see the actual images and CD's to be able to compare with my previous scans...which means waiting til Monday. People can tell you "benign" all you want, but honestly I don't feel relief until I know a team of specialists whose main job is assessing liver lesions (benign and from ocular melanoma metastases) has looked them over. So bring on another weekend of anxiety ridden ridiculousness. Jeff called out of work on Friday to be able to stay with me, and I was forever grateful for it. I honestly can't say I remember that weekend much.. it's all a very big blur. I know we celebrated my sister's birthday on Friday and then we played poker (I won, yay!)...but most of the rest of the weekend is foggy.
Sunday Jeff headed back, and I stayed at the parents' pad to await Monday's news. Monday morning I woke up and decided to go outdoors for a run instead of my usual indoor running. I put on my cold weather gear wrapped myself up and hit the road. I considered not coming back. And I ran until I thought that if I ran any further I may have a hard time making it back. I think it ended up being around 6miles. Not bad, especially considering all the hills!
I got back and awaited the inevitable call and for the "bomb" (my phone's name while it is awaiting life-altering information) to ring. I had left the bomb under my dad's care because I didn't want to be the one to pick it up. Around noontime it finally rang, Dad picked up, June almost wouldn't tell him anything, then he finally handed it to me and mouthed "It's good news." My heart felt like it was going to pound through my chest! There's no going back once bad news is given so the fear is palatable. So in fact, it was good news. The team had decided that the liver lesions were all benign FNH's . PHEW! Breathe of relief. But still plenty of questions, why hadn't these been documented on the 1st, 2nd, 3rd, 4th scans? Why were they just noticeable now? How could you tell that they were definitely NOT cancer?
Questions had to wait until I saw Dr. Sato on Wed. the night before Thanksgiving, but that was o.k. by me. I hightailed it down to DE after that to celebrate a little with Jeff and then with Mike and Rose. My brother Ryan and my Mom drove down on Tuesday evening to come with me on Wednesday which was quite nice of them, and I was glad to have everyone there. I had baked cookies for Dr. Sato and his nurse for the holidays to bring with me and put them in cute little boxes and such, it was fun to bake with Jeff :) So Wed. came and I got good answers about how to distinguish and Dr. Sato told me "Don't worry I will take care of you." :) It was sweet, he is such an amazing person. I can't believe the capability of someone who sees so many people to be able to express individual empathy by case and actually care about my concerns. I know that that might seem as though it would be something that is expected from all Dr.'s but it is definitely hard to come by. We also decided to continue the Sutent for another 3 months, so I will be on that until February (hopefully). Then I'm not sure. I know I want to take about 1 month off to do some holistic cleanses, but then it's back to some sort of adjuvant treatment I think. After the discussion with him last week I'm leaning towards GM-CSF....but we'll see.
On that note, there is a fantastic blog out there for anyone who is interested in learning more about OM, or about treatment options for OM mets. The people who write it absolutely astound me with their strength and perserverance. It is a young couple from the Boston area, and the husband was diagnosed with mets. His wife and him have flown around the country and devoted countless hours to doing intense research in order to try and find the best treatment possible for him. It really is just amazing. Makes me speechless at times, and also very thankful that I have access to information like this. All ocu-mel patients who have seen this blog are better for it, and more informed. Check it out if you get a chance:
http://greggandsara.blogspot.com/
I can't say enough positive things about them, even though we have never met. On the downside it makes me feel as though I haven't done enough research and need to do more...if only there were time. And if only there was a place where all patients with this disease could go and this information could be centralized! The closest we get is an email serve-list called the ocu-mel list. I think I will post a few links on the right-hand side of my page with this info. Please keep them all in your thoughts this week as Gregg (the hubby) is undergoing some new treatments and they need all the support they can get.
Additionally, thanks to everyone who kept my cousin in mind last week as well. His surgery went well and when we saw him on Thanksgiving he seemed to be on the mend. They think that they were able to get all of the disease in/around his thyroid, but I believe they're still awaiting the biopsy results.
Which brings me to Thanksgiving.. it was in fact a very good year to be Thankful. I know that seems a little crazy, what with being diagnosed and all, but it definitely has made me appreciate even more the things that are important in my life. For that I am very thankful. With the new clear scans I will actually pass my diagnosis date, January 28th which will mark 1-year since discovery! I'm not sure whether to celebrate one year or hold a moment of silence for all that was lost? I guess we'll see how I feel that day.
The rest of last weekend I spent with my family doing various things. My sisters, mom, and I went to this thing called the "Festival of Trees" a pretty cool event in Springfield that raises money for the boys and girls club of Springfield. You get lottery tickets and get to place them in various buckets for the different trees. There are a ton of trees and they're all decorated and contain various gift cards, money, presents, items, etc.. it's pretty cool. If you win you win the tree and everything on,under, and next to it! I'm trying to use my vision board and manifesting to imagine myself winning a tree. Treen and I also had our second annual ginger-bread house making event (ok I just made that up, but we mine as well call it that!) and it was just as (un)successful as last year! Though it did end up staying together, of course until I ate part of the roof. OOps! I love gingerbread. :)
Oh and before I forget, a few pictures from the last couple weeks....
So that's been that for the last month or so. I am in the clear for another 3 months and looking forward to the holidays quite a bit. Jeff and I are having two trees (upon my insistence, one at my place and one at his) and will be buying the first one this Saturday! :) Yay.
I've had a tough end of the month, but am so-so stable for now. I need to find a new way to dealing with the possible bad news I may encounter at some point in my life of my cancer spreading. That is one obstacle I feel as though I haven't made any progress on, and unfortunately it's the biggest and most important one. If I can somehow wrap my head around the idea that if I do get mets I CAN COPE and not automatically count myself as dead (as I tend to do) then I think I may be able to spend more time living and less time worrying about not living... we'll see, it's a big task and top of the priority list.
To all those who I didn't get a chance to talk to or see over the holiday, happy belated Thanksgiving, and a happy holiday season.
I wish you all the best and hope Santa (or whomever else) brings you nice holiday gifts!! :)
love,
Carissa
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
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