Wednesday, August 20, 2008
Life is good.
Hello hello all,
It seems I have lapsed again in keeping my blog up to date, and for that I apologize, as usual life has been extremely hectic! Since the last time I wrote August has come and gone and taken my life in a whirlwind...thankfully it's been a fantastic whirlwind :)
July finished off with a fun trip to NYC to visit some friends that I had studied abroad with and a couple of whom I hadn't seen in years, so it was great to catch up with them! We had a packed weekend, but I think I managed to get enough rest. That Monday I had my next set of blood tests and my WBC's and neutrophils had actually stayed stable, so I think perhaps all the recollecting and laughing with the girls helped at least a little :) I'll try and post some pictures from that weekend here.
After that I was only in Boston for a couple days before busing it down to Philly to help my boyfriend Jeff celebrate finishing his bar exam -- yay!!! It was good timing too, b/c I think had he had to study for too many more days he might have legitimately lost his mind :). I also got the chance to meet some more of his family while I was down there and hang out with our friends Rose and Mike who inadvertantly led to our getting together :). Good times. I came back that Sunday to celebrate my bro's 24th birthday -- Ry guy you're starting to age! :) then was back to work for one week before heading off for vacation. In the meantime I had another blood test that was again good, and my WBC's and neutrophils had climbed. On the downside I've been developing a lovely immuno-suppressed eczema type rash on my elbows, which has not been very fun :( and my hair continues to get white -- but that part I think is kinda cool.
Vacation was as most are, great, but wayyyyy too short. It was over in the blink of an eye, but it was cram packed with tons of activities and definitely made the time leading up to the imminent Aug 18th three-month scan checkup quite a bit easier.
Vacay started in Maine at OOB where my family has been going for ages, sadly the 5 days I was there we didn't have much sunshine, but regardless it is always fun getting to spend time with my parents and brothers and sisters. I was hoping to get a chance to see Alexis' reaction to her first time at the ocean (I think?) but it didn't quite work out this year, but maybe next year? I hear that she loves the water though, which is a bit surprising considering how damn cold Maine water is. I do in fact love Maine though, one of those places where when I arrive there I feel myself let out a nice deep breathe and tension rolls off my shoulders, if only for a little bit. Being there also allows me to do one of my favorite things, run on the beach in the early morning. The smell of the ocean and the cool breeze are two pretty powerful relaxants for me...maybe there is something to those relaxing tapes that play sounds of the ocean :)
So depsite the not so hot weather, Maine was good. I had another round of good blood tests that Monday as well, let's hope that trend continues! I left there Tuesday night to drive back to Boston and repack my bags for an early early flight out of Logan as I headed to Michigan to meet up with Jeff and some of his fam at his Grandma's cabins in upper-peninsula Michigan. (By the way it was just brought to my attention this morning that all the states I visited on my vacation began with an "M" hehe). The flights were uneventful but the arrival was not. I touched down in what looked like the middle of the woods, and actually was, but had a nice warm welcome from Jeff :) always a good way to start the day.
The two hour drive back to their cabins on Lake Superior were well worth it. The view, the land, the lake it's all absolutely breath taking. I think the best word for it is just utterly serene. Quiet, calm, and everything that I needed right at that moment. I hope to get a chance to go back again in the future :) I'll also try and post some of those pictures. I spent a couple nights there with him, his brother, mom, and grandma before Jeff and I started our 13 hour road trip we had planned in order to save a few bucks and get us down to a wedding for of a college buddy of his.
So Friday early morning began our road trip, and in fact, and perhaps surprising to some, it was quite enjoyable. We traded off driving and saw a few fairly interesting things (a place called Mosquito Inn, and a Paul Bunyon Restaurant with a 50 ft high statue of him ... to name a few) and some 13 odd hours later we arrived in St. Louis Missouri -- the last stop on the vacation train. That night I got to meet a handful of his old college cronies, and it was interesting, a bit like being the female equivalent of the godfather as I walked around the next day surrounded by 5 strapping young men. :) Long story short, we ended up in Hannibal MO for the wedding, and needless to say I'm fairly certain that will be my one and only visit to Hannibal and most likely my only trip to MO ever. Though at least now I can say I've been to MI and MO and we drove through most of Wisconsin (lots of fields) and Illinois (more fields). Anyone who's looking to develop some land those are the places to be...though getting people to move into the houses may be a bit tricky. The best part about Hannibal was the fact that you could buy a Jack and Coke and a Smirnoff Twist for a mere $5 :)
In any case, Sunday was the end of vacation and back to Boston to prepare for a looooooong day of tests/scans on Monday. That evening I took another drive up to Manchester NH to pick up Andrea (bf from Baltimore) and Jeff -- poor Andi had SouthWest lose her luggage :( though it was eventually found.
So then along came Monday...the 18th had finally arrived. I would say I almost didn't know it was coming because I was so busy, but that would be a little white lie. I did start to get a little "scanxiety" on Sunday, though I still was able to sleep and enjoy spending time with both Andi and Jeff that night. Monday morning brought me back to my least favorite of all my doc's Dr. Douchebag (ahheeem I mean Dr. Gragoud-asssss as I've decided his name should be). I had my 6 month eye check up to document my tumor's regression and the general status of the aforementioned "affected" eye -- I think it's hilarious when they call it an "affected" eye, as if the eye could choose to either be affected or not by the cancer hehe. Anyways, Dr. G. was his typical lack of any good bedside manner man and did not tell me anything of any consequence except that I still had fluid (duh, I can't see dude!) and that the tumor had regressed. I inquire "can you tell if it has shrunk quite a bit, or just a little?" to which he replied "It doesn't matter." this is why I don't like him -- he assumes that what matters to him is all that I should be concerned with and single-handedly tries to rip any control a cancer patient has over their own knowledge of their disease. I can't wait to no longer be under his care (which hopefully will come to fruition next week). I'm crossing my fingers and hoping that the regression was slow, as they say a slow regressing tumor was a slow growing tumor, which means it was less aggressive and hopefully less likely to have spread... I'll take any relief I can get since I'm dealing with being on the brink of "high - risk for metastasis".
So after a lovely morning in his greatness' presence, I then went to my next appt. a heart scan called a MUGA which tests the flow of my blood out of my heart. I have to say this is probably one of my more favorite tests (if someone forced me to choose between the lesser of two evils) because I get a pillow, a warm, blanket, a TV, and I get to lie in fetal position -- my typical sleeping pose :). Well, this time it was just too much to resist, I fell asleep :) I guess my heart rate, which is normally fairly low (47-53 or so) dipped so low when I fell asleep that they had to come and wake me up because the machine wasn't working :) hehe. I think Jeff and Mom got a bit scared too b/c the tech tried to wake me up and I didn't budge for a bit, until Jeff got up and woke me up hehehe...
Then came test # 3 and the one I always dread, my liver MRI. Honest to god, I never knew that your liver was that important until this whole cancer thing came around. I always thought the only liver problems people had were cirhosis (sp??) due to extensive drinking. In any case, the test arrived or I suppose I arrived for the test, and was taken to the lovely room with the loud magnets. Downfall was this time I didn't have any music, just earplugs! I'm starting to wonder why I can't have someone in the MRI room with me, it's not as if its x-ray exposure like a PET or CT scan...it's only harmless magnets....perhaps I will ask in the future. In any case, an hour or so later and it was over, the only thing left to do WAIT. Definitely my favvvvooorite part. :/ and that ended the long day. Jeff toughed it out well, and it was very nice to have him there along with my Mom -- they are both troopers. I wouldn't want to be there if I didn't have to be!
Monday night was actually quite fun, though I was exhausted, Ry & Jackie and the pretty pretty princess Alexis came over for dinner and Jeff cooked. God knows he cooks 10 x better than I do, especially since I don't really cook or eat much hot food these days! I also got to see my friend Laura for a bit when she dropped by to pick up Andrea, so that was nice as well :) All in all the evening was quite good.
Tuesday was a bit tumultous... it started off well by getting a lot of rest the night before, and then it was off to work for me. I got a few things done and then decided to call and check when I would be able to pick up my reports from the scans the day before so that I could send them down to Dr. Sato. Low and behold when I called yesterday afternoon they told me the reports were ready and I could come and pick them up. Yikes!! I was sort of not quite prepared for that as I thought I wouldn't be able to get them until Wednesday.
So I drove home, and picked up Jeff to drag him with me to go and pick them up... had a slight little breakdown in the meantime but I think all in all not as neurotic as three months ago when I had to go for my last MRI. The analogy I gave (I'm still working out the wrinkles) is that imagine you are a normal healthy person, and every 3 months you have to go to someone who will tell you either (a) you are perfectly healthy, see you again in 3 months, or (b) you are dying, and most likely not live beyond a year. Now imagine you had to face this reality every 3 months...that's sort of what it's like getting these MRI results back. I know it may sound a bit dramatic, but really I think the only way you could ever be not shaken up by having to go get these results would be if you were totally and completely at peace and had acceptance of your own death and mortality did not frighten you. Well folks, I'm not there yet, and so when I'm sitting there thinking about (a) or (b) about to happen it scares the shit out of me! But the breakdown was only about an hour or so and then it was off to the Brigham to pick up the results. I had thought that I would not look at them until Jeff and I got back to my parents' house that evening (as we were going there for dinner), but when the lady handed them to me they were not in an envelope, so I just couldn't resist. I started skimming, and I could feel my heart beating in my throat practically and then I saw the beginning of the word "unchanged" and raced through the rest of the report that told me nothing but GOOOOOD news. The spot in my liver was unchanged, completely the same, and was said to be an FNH (as Dr. Sato had assessed it to be the last time I had a scan -- though I was still quite a bit worried). Hip - hip - hooray I say! Another 3 months of NED living (no existing disease) which will bring me straight through my 26th B-day and right to around Thanksgiving time.
All in all things have been hectic but great. Jeff has brought so much joy and happiness into my life and I'm very thankful and happy to add him into my fantastic support system that all of you, my friends and family, have already provided me with. I'm happy to be happy.
Next up is my 3 mo. chemo check-up with Dr. Sato next week and an appt. with the folks at Wills Eye Institute to try and get them to follow my case instead of Dr. G. Also at some point I'll be hopefully getting back the results from the eye tests on Monday and will post more when I know those.
Cheers to 3 more months all, and I hope you all start planning something big for my b-day now! :) hehe
Be well, love
Carissa
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
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