I had my second infusion on Tuesday, August 26th. It was uneventful, for which I am grateful. I saw the RNP who works with Dr. Michaelson first, and she was quite shocked at my complete lack of any side effects from the first week of medications...apparently, because I've started when I'm still feeling well, it makes a big difference. Some people start the trial when they are really sick and this just makes it worse. Anyway, it was a long day of waiting around. Really no after effects, other than I couldn't sleep that night. They gave me anti-nausea medication along with steroids to help it work better, and the steroids really must have hyped me up. Yikes....it was a long night. Today is Thursday, and while I slept great last night, my energy level is pretty low today....I think I need some protein....
Peggy and I played 4 games of Scrabble--we were at MGH for so long. She has a great little travel Scrabble...you can close it up and the letters stay put, move on to another appointment and start up where you left off...it was a great way to pass the time. I shouldn't complain about the waiting time....as I looked around the room on the 8th floor where the infusions are done, there were so many very sick people who were suffering, and on their way in to be given meds that were going to make them suffer even more, at least in the short term.
I am truly grateful that I am feeling so well. My sciatic nerve problem seems to be resolved, the weird pain in my side is gone, I am not having any side effects from the meds, my vegan eating plan is going well and I feel great. I keep telling them at MGH that they must have messed up on my diagnosis....I only wish...
Thursday, August 28, 2008
Friday, August 22, 2008
Catching up.....
Well, I'm on day 4 of my clinical trial treatment. First day was okay, second night I couldn't sleep, which made for a very long next day....I was just out of it, neausea, tired and just weird feeling. I was at work and called it a day around 4:30pm. Today, I took the meds around 3pm, and tomorrow I'll take it in the evening, so that the crummy feeling will be while I'm asleep, instead of while I'm trying to function. I feel quite good today, my head is a bit fuzzy, but not too bad and I seem to have a lot of energy...that's a good thing.
That sciatic nerve problem....I was pretty uncomfortable just before Eagle Camp; my sister-in-law suggested a chiropractor, so I saw one the day before I left. He said that my sacriliac joint was inflamed and turned a bit, possibly from the surgery, and it was wreaking havoc on my sciatic nerve. He did a bunch of pulls and exercises and massages, told me to continue them at EC. He also said that driving long distances was the worst thing I could do, so he gave me some ice packs for the ride. He was a super guy....he has been diagnosed with non-Hodgkins lymphoma. We chatted for quite awhile, and he invited me to go with him to Chinatown to see a man called Tom Tam, who is working with cancer patients, using Chinese techniques. It is on Saturdays, and I may go at some point, but not this week. My back felt much better the next morning and continued to feel good at EC. By the time I drove to CN and back to MA, it was totally acting up again and I was very uncomfortable on the day of my infusion at MGH. But I have been doing the exercises, and it seems to be better again.
I had my appointment with the MD/holistic oncologist just this past weekend. I drove to Litchfield, CN directly from South Hero, VT (Eagle Camp); Keith, Kristeen and Maia went home first (they are just 20 miles South of EC), unpacked, packed again and met me in Litchfield that evening. We stayed at a Bed & Breakfast in Litchfield...when I was able to get online for the first time in a week, I went the the NPR/MyCancer blog. Leroy Sievers had passed away the night before. I knew he was near the end...I was saddened. He is the one who has been writing a blog being published on NPR. He had colon cancer, had surgery and was clear for 4 1/2 years, when the scans showed that it had gone to his brain and lungs...they told him 3-6 months and he lived a full life for 33 months, writing a post in his blog every day. He was great. I didn't even know him, but I miss him.
We met with Malynn on Sunday morning for about 2 1/2 hours. She listened and took notes, made suggestions, answered many questions; in general kind of put all the pieces together for us. Later, we went to their home for dinner, where she made it a learning experience for us, using some unusual spices for an Indian stir-fry, and making a dessert that she actually has for breakfast, but she adapted it to have as dessert. Keith, Kristeen and Maia went back to the B&B and I stayed there for awhile and did some Imaging with Malynn. Then Ryan drove me back to the B&B. On Monday morning, we went back to their house and had our last session, where she had her conclusions and suggestions all written up for us. A lot of the food issues were similar to Chris Brown's, but I feel that I have a better understanding now, and she added to what I'm doing. She feels that I should have 2-3 eggs a week, which is fine by me--I love eggs, also that I can have ghee (Indian butter, where the butter is boiled and the most harmful part of the butter is taken off), that these would be good while on chemo. Our visit was very worthwhile. Malynn and Ryan are two of the most outstanding people I've ever met and I think that K&K felt the same way....just really unusually warm, friendly, smart, unassuming, confident but humble, just a unique combination. The time spent with them was truly amazing.
All right, I'm off to bed. It's Friday night, Brenda and Carole came down tonight and we walked the Harbor and stopped at the local Tavern, the Olympics are ending--they were so enjoyable, I got a lot done today at work and at my house, and I'm feeling good......I'll take it! One day at a time......
That sciatic nerve problem....I was pretty uncomfortable just before Eagle Camp; my sister-in-law suggested a chiropractor, so I saw one the day before I left. He said that my sacriliac joint was inflamed and turned a bit, possibly from the surgery, and it was wreaking havoc on my sciatic nerve. He did a bunch of pulls and exercises and massages, told me to continue them at EC. He also said that driving long distances was the worst thing I could do, so he gave me some ice packs for the ride. He was a super guy....he has been diagnosed with non-Hodgkins lymphoma. We chatted for quite awhile, and he invited me to go with him to Chinatown to see a man called Tom Tam, who is working with cancer patients, using Chinese techniques. It is on Saturdays, and I may go at some point, but not this week. My back felt much better the next morning and continued to feel good at EC. By the time I drove to CN and back to MA, it was totally acting up again and I was very uncomfortable on the day of my infusion at MGH. But I have been doing the exercises, and it seems to be better again.
I had my appointment with the MD/holistic oncologist just this past weekend. I drove to Litchfield, CN directly from South Hero, VT (Eagle Camp); Keith, Kristeen and Maia went home first (they are just 20 miles South of EC), unpacked, packed again and met me in Litchfield that evening. We stayed at a Bed & Breakfast in Litchfield...when I was able to get online for the first time in a week, I went the the NPR/MyCancer blog. Leroy Sievers had passed away the night before. I knew he was near the end...I was saddened. He is the one who has been writing a blog being published on NPR. He had colon cancer, had surgery and was clear for 4 1/2 years, when the scans showed that it had gone to his brain and lungs...they told him 3-6 months and he lived a full life for 33 months, writing a post in his blog every day. He was great. I didn't even know him, but I miss him.
We met with Malynn on Sunday morning for about 2 1/2 hours. She listened and took notes, made suggestions, answered many questions; in general kind of put all the pieces together for us. Later, we went to their home for dinner, where she made it a learning experience for us, using some unusual spices for an Indian stir-fry, and making a dessert that she actually has for breakfast, but she adapted it to have as dessert. Keith, Kristeen and Maia went back to the B&B and I stayed there for awhile and did some Imaging with Malynn. Then Ryan drove me back to the B&B. On Monday morning, we went back to their house and had our last session, where she had her conclusions and suggestions all written up for us. A lot of the food issues were similar to Chris Brown's, but I feel that I have a better understanding now, and she added to what I'm doing. She feels that I should have 2-3 eggs a week, which is fine by me--I love eggs, also that I can have ghee (Indian butter, where the butter is boiled and the most harmful part of the butter is taken off), that these would be good while on chemo. Our visit was very worthwhile. Malynn and Ryan are two of the most outstanding people I've ever met and I think that K&K felt the same way....just really unusually warm, friendly, smart, unassuming, confident but humble, just a unique combination. The time spent with them was truly amazing.
All right, I'm off to bed. It's Friday night, Brenda and Carole came down tonight and we walked the Harbor and stopped at the local Tavern, the Olympics are ending--they were so enjoyable, I got a lot done today at work and at my house, and I'm feeling good......I'll take it! One day at a time......
Wednesday, August 20, 2008
Clinical Trial begins...
Took off around 10am with Peg and headed for MGH. I had to get there early to sign the consent and then they had to get me registered. I had bloodwork done (they missed another vein--I guess my veins jump), saw Kara, the RNP, and Carol, who is an oncology nurse working on the trial, and said a brief hello to Dr. Michaelson, who, when he heard me say I had just returned from vacation, said, "you really are getting around, Italy, Lake Champlain...let me go and see my sick folks". A simple comment, suggesting that I'm not as sick, was comforting....he's good at that...they are all. It has been a positive of this whole thing, the outstanding and amazing people I have come in contact with. I am so appreciative and grateful for their being genuine, their warmth, and their patience. They are so smart and filled with knowledge and yet, are humble and unpretentious; constantly finding things to say that build you up and pick up your spirit...they do such honorable and difficult work...I am in awe of them all.
Before the infusion, I was weighed and measured...it turns out that they do this every time---it is how they measure my dose of chemo. They brought us back to a comfortable area with 4 areas separated by cubicle curtains and a very comfortable hospital-type lounge chair. There was also a TV. Once my fresh batch of Gemcitabine came from the pharmacy (45 minutes), the nurse gowned and gloved up (it's potent stuff) and reviewed and reviewed and reviewed, that I was the correct patient receiving the correct dose and medication. I appreciated that. The infusion took about 45 minutes, burned like crazy, and was finally done. I picture it now burning the bad cells right out of my body and off the face of the earth! I got unhooked and headed back to the office, took care of a couple of key things, packed up my computer and went home, not knowing how I was going to feel in the morning. I was having fairly severe stomach cramps, which continued through 9pm and then finally subsided. They had given my some anti-neausea pills before the infusion, so there was none of that. I think the cramps were from too much broccoli thoughout the day. Also, my back was a nightmare--the sciatic nerve problem again. More about that later.
Before departing MGH, they told me to do careful mouth care, but not see a dentist for teeth cleaning due to digging at the gums, etc., to do much hand-washing without going OCD, stay away from sick people, and all that, because my white blood cells will be decreased. That for the next 24 hours I might spike a fever, have flu-like symptoms, not be able to sleep, etc. Once home, I was really tired, still trying to get my house in order from returning from Eagle Camp, finally made it to bed by 11 and had no problems. Slept great, felt great. I took my pill dosage this morning, had breakfast and headed off to the office. I have a big deadline this week, so I really need to be here, and I should be here, because I feel great!
So....I'm on the clinical trial...keep the good karma coming my way that this is going to give me some extra time to hang around...I quite like it!
Before the infusion, I was weighed and measured...it turns out that they do this every time---it is how they measure my dose of chemo. They brought us back to a comfortable area with 4 areas separated by cubicle curtains and a very comfortable hospital-type lounge chair. There was also a TV. Once my fresh batch of Gemcitabine came from the pharmacy (45 minutes), the nurse gowned and gloved up (it's potent stuff) and reviewed and reviewed and reviewed, that I was the correct patient receiving the correct dose and medication. I appreciated that. The infusion took about 45 minutes, burned like crazy, and was finally done. I picture it now burning the bad cells right out of my body and off the face of the earth! I got unhooked and headed back to the office, took care of a couple of key things, packed up my computer and went home, not knowing how I was going to feel in the morning. I was having fairly severe stomach cramps, which continued through 9pm and then finally subsided. They had given my some anti-neausea pills before the infusion, so there was none of that. I think the cramps were from too much broccoli thoughout the day. Also, my back was a nightmare--the sciatic nerve problem again. More about that later.
Before departing MGH, they told me to do careful mouth care, but not see a dentist for teeth cleaning due to digging at the gums, etc., to do much hand-washing without going OCD, stay away from sick people, and all that, because my white blood cells will be decreased. That for the next 24 hours I might spike a fever, have flu-like symptoms, not be able to sleep, etc. Once home, I was really tired, still trying to get my house in order from returning from Eagle Camp, finally made it to bed by 11 and had no problems. Slept great, felt great. I took my pill dosage this morning, had breakfast and headed off to the office. I have a big deadline this week, so I really need to be here, and I should be here, because I feel great!
So....I'm on the clinical trial...keep the good karma coming my way that this is going to give me some extra time to hang around...I quite like it!
Monday, August 18, 2008
Eagle Camp 2008
I’m on vacation at Eagle Camp…on the Grand Isle in the middle of Lake Champlain. I’ve been coming here for 27 years, have missed maybe 3 during those years. Hmmmm, how to describe Eagle Camp, a place that defies description…Well, it’s been around since 1890, having been a Boy Scout Camp, a family Christian camp, and I’m not sure what else. But during the years, traditions were established and those standards still apply, even though times have certainly changed in the last118 years in the way we live our lives.
Camp runs for 9 weeks every summer. I go on week 8, and all the folks here are week 8ers also, so we know each other for this one week of the year, every year (except our families, of course). There is no dress code here, no competing for “stylin”…it’s shorts, t-shirts, sweatshirts, old jeans. EC’s motto is, Style is Dead, Comfort is King, and we all seem to take that to heart. The usual full camp is around 128+ people, and they include all ages, from brand new babies to elderly folks who have come for 50+ years and still make that effort to get back to their beloved Eagle Camp.
There is a tournament sign-up sheet posted on Sunday afternoon, and then on Monday--let the games begin. The tournament games include shuffleboard, bocce, golf-croquet, scrabble, ping pong, cribbage, backgammon, horseshoes (my brother wins this every year), trivial pursuit (teams), and a few others that I can’t think of. You make arrangements with your opponents, play the game and post it on the game grid, and the next winners play and so on—by Friday night, the games are finished and awards are given at the Camp Show. There are also two tennis courts here that get some use, but tennis is not usually a tournament game—tennis is awfully competitive for Eagle Camp…
Eagle Camp sits right on Lake Champlain, it consists of a combination of cabins and 12X12 platform tents. Beds, mattresses, bureaus and bedding are supplied. It consists of the Upper Tent Line and a Lower Tent Line, both include cabins also. I stay on the Lower Tent Line, which is right on the edge of the lake. I look out my tent flap and see the lake and the Adirondacks directly across the lake, where the sun sets each evening. After arrival and greeting friends that you haven’t seen in a year, and family, the car gets unpacked and parked in the lot up the hill and away from the tents and cabins. This is Northern Vermont and one must pack for all eventualities--intense heat, quite chilly to downright cold, rain and the dreaded mud. Meals are supplied and eaten at the Dining Hall at 8am, 1pm and 6pm. A bugle boy wakes us up at 7am playing reveille, then a reminder at 7:30, and we’re off to breakfast. Oatmeal, prunes, OJ, eggs, muffins, cereal are the standard fare, but there are variations during the week. Lunch is actually dinner, the big meal of the day, kind of like an old-fashioned Sunday dinner, but every day of the week. The menu stays pretty much the same and we know what dinner (at 1pm) will be—one day chicken, potatoes, veggies, salad, and the other days it’s meatloaf, ham, pork, etc. The bugle boy plays a little tune (never differing) that tells us when to go to the dining room (as if we’d forget!) The dining room is…rustic, eight large tables with 16 per table with large windows overlooking the lake and the mountains on one side. My niece Courtney is on the waitstaff this year and scored us a lakeside table. She rocks! Supper is a lighter fare, grinders, spaghetti and meat sauce (remember that meatloaf? leftovers are in the meat sauce), tuna salad, ham salad, bread, salad, etc. There is never a shortage of food, most of which is pretty good. There is usually something going on in the evening—Sunday night hymn sing, bingo, tie-dyed t-shirts, scavenger hunt, ultimate frisbee, outside concert on Thursday nights down at the Snowflake Vineyard...or just hanging out, watching some of the tournaments is pretty fun. Sometimes we do a group game in one of the tents after dark...25 Words or Less is a favorite. Taps is played at 10:30pm and quiet time is until 7am, when the bugle boy arrives again.
As I drive into EC every year, nothing seems to have changed…it looks exactly the same, although improvements are made and maintenance has been done, flowers, trees, etc., planted and trimmed, but overall, it just feels the same year after year, which is so great. I always have the same tent, #9, right on the lake. The food issues this year are a concern, because there is no supermarket on the Grand Isle, just little corner stores. I have brought a few things from home, I know that they have veggie burgers, and salads, oatmeal, of course, and I will just make it work. When I arrive to Saturday night dinner, at my table of 16 (all family/extended family), my sister-in-law, Andrea, had secretly set up an entire vegan meal for us all! They had all brought crockpots and salads chock full of wonderful foods that I could eat…I have never eaten so well! And there were leftovers that we have been enjoying too. My daughter-in-law brought many vegan dishes that we have been enjoying also, so yummy!…today is Monday and between the meal on Saturday night and all the food that Kristeen prepared, Carole, Mandy, Kristeen, Keith and I have been eating and enjoying…it has been another eye-opener showing the great food that is out there and is vegan. It’s really astonishing…they made it so easy and I am grateful for their efforts. The day that we all leave for our vacations at EC is a hectic day, and their day had added chaos with all that food preparation...I was touched by their love and support in the challenges of sticking with my eating plan at EC.
Eagle Camp has rules and traditions and they are strictly adhered to…Sunday is a day of rest and there are no games (noisy games) until after 3pm. Rest hour is every day from 2pm-3pm, and most folks nap during that time. No cell phones, computer games, radios, video games, etc; cell phones can be used up behind Perry Hall only, otherwise they should remain off. If you have a noisy child during rest hour, take him off-camp, so that others can enjoy their rest hour. Alcohol is prohibited. No bike riding in camp, take your bike up the hill before you ride it. Notify your waitress if you won’t be there for a meal. Eagle Camp is steeped in tradition. It’s great. Three words that describe Eagle Camp for me are...tradition, comfort, peace. It is quiet here and life slows down...we chat, read, have solace or not...sometimes a group of us might spend an hour watching little kids play together and are totally enthralled by them...EC is a special place.
Camp runs for 9 weeks every summer. I go on week 8, and all the folks here are week 8ers also, so we know each other for this one week of the year, every year (except our families, of course). There is no dress code here, no competing for “stylin”…it’s shorts, t-shirts, sweatshirts, old jeans. EC’s motto is, Style is Dead, Comfort is King, and we all seem to take that to heart. The usual full camp is around 128+ people, and they include all ages, from brand new babies to elderly folks who have come for 50+ years and still make that effort to get back to their beloved Eagle Camp.
There is a tournament sign-up sheet posted on Sunday afternoon, and then on Monday--let the games begin. The tournament games include shuffleboard, bocce, golf-croquet, scrabble, ping pong, cribbage, backgammon, horseshoes (my brother wins this every year), trivial pursuit (teams), and a few others that I can’t think of. You make arrangements with your opponents, play the game and post it on the game grid, and the next winners play and so on—by Friday night, the games are finished and awards are given at the Camp Show. There are also two tennis courts here that get some use, but tennis is not usually a tournament game—tennis is awfully competitive for Eagle Camp…
Eagle Camp sits right on Lake Champlain, it consists of a combination of cabins and 12X12 platform tents. Beds, mattresses, bureaus and bedding are supplied. It consists of the Upper Tent Line and a Lower Tent Line, both include cabins also. I stay on the Lower Tent Line, which is right on the edge of the lake. I look out my tent flap and see the lake and the Adirondacks directly across the lake, where the sun sets each evening. After arrival and greeting friends that you haven’t seen in a year, and family, the car gets unpacked and parked in the lot up the hill and away from the tents and cabins. This is Northern Vermont and one must pack for all eventualities--intense heat, quite chilly to downright cold, rain and the dreaded mud. Meals are supplied and eaten at the Dining Hall at 8am, 1pm and 6pm. A bugle boy wakes us up at 7am playing reveille, then a reminder at 7:30, and we’re off to breakfast. Oatmeal, prunes, OJ, eggs, muffins, cereal are the standard fare, but there are variations during the week. Lunch is actually dinner, the big meal of the day, kind of like an old-fashioned Sunday dinner, but every day of the week. The menu stays pretty much the same and we know what dinner (at 1pm) will be—one day chicken, potatoes, veggies, salad, and the other days it’s meatloaf, ham, pork, etc. The bugle boy plays a little tune (never differing) that tells us when to go to the dining room (as if we’d forget!) The dining room is…rustic, eight large tables with 16 per table with large windows overlooking the lake and the mountains on one side. My niece Courtney is on the waitstaff this year and scored us a lakeside table. She rocks! Supper is a lighter fare, grinders, spaghetti and meat sauce (remember that meatloaf? leftovers are in the meat sauce), tuna salad, ham salad, bread, salad, etc. There is never a shortage of food, most of which is pretty good. There is usually something going on in the evening—Sunday night hymn sing, bingo, tie-dyed t-shirts, scavenger hunt, ultimate frisbee, outside concert on Thursday nights down at the Snowflake Vineyard...or just hanging out, watching some of the tournaments is pretty fun. Sometimes we do a group game in one of the tents after dark...25 Words or Less is a favorite. Taps is played at 10:30pm and quiet time is until 7am, when the bugle boy arrives again.
As I drive into EC every year, nothing seems to have changed…it looks exactly the same, although improvements are made and maintenance has been done, flowers, trees, etc., planted and trimmed, but overall, it just feels the same year after year, which is so great. I always have the same tent, #9, right on the lake. The food issues this year are a concern, because there is no supermarket on the Grand Isle, just little corner stores. I have brought a few things from home, I know that they have veggie burgers, and salads, oatmeal, of course, and I will just make it work. When I arrive to Saturday night dinner, at my table of 16 (all family/extended family), my sister-in-law, Andrea, had secretly set up an entire vegan meal for us all! They had all brought crockpots and salads chock full of wonderful foods that I could eat…I have never eaten so well! And there were leftovers that we have been enjoying too. My daughter-in-law brought many vegan dishes that we have been enjoying also, so yummy!…today is Monday and between the meal on Saturday night and all the food that Kristeen prepared, Carole, Mandy, Kristeen, Keith and I have been eating and enjoying…it has been another eye-opener showing the great food that is out there and is vegan. It’s really astonishing…they made it so easy and I am grateful for their efforts. The day that we all leave for our vacations at EC is a hectic day, and their day had added chaos with all that food preparation...I was touched by their love and support in the challenges of sticking with my eating plan at EC.
Eagle Camp has rules and traditions and they are strictly adhered to…Sunday is a day of rest and there are no games (noisy games) until after 3pm. Rest hour is every day from 2pm-3pm, and most folks nap during that time. No cell phones, computer games, radios, video games, etc; cell phones can be used up behind Perry Hall only, otherwise they should remain off. If you have a noisy child during rest hour, take him off-camp, so that others can enjoy their rest hour. Alcohol is prohibited. No bike riding in camp, take your bike up the hill before you ride it. Notify your waitress if you won’t be there for a meal. Eagle Camp is steeped in tradition. It’s great. Three words that describe Eagle Camp for me are...tradition, comfort, peace. It is quiet here and life slows down...we chat, read, have solace or not...sometimes a group of us might spend an hour watching little kids play together and are totally enthralled by them...EC is a special place.
Alright, I may not be able to post this, as it seems that I cannot get online up here...I have written it as a Word document and will post as soon as I can.
Friday, August 8, 2008
MGH....fighting the fight
Hospitals are places that most of us pass by, maybe daily, not really thinking too much about them, because, hopefully most of the time we don't need their services...of course the same can be said for many things--we pass by the electric lighting store all the time, but suddenly when we need a new light fixture, we are thrust into the world of lighting and we learn and gather information. And such is the case with hospitals...but in the case of hospitals, we hope that we won't be stopping there.
My point is...it's becoming so routine for me to run into MGH--too routine for my taste, but--what can you do...thank goodness there are such fantastic institutions around to help us when our good health fails us. I know my way around MGH now and the Yawkey Cancer Center, not accomplishments I aspired to. Each time I'm there, reality sets in...it's way easier when you're away from there and working/playing in your usual environment, to put that culprit away and not think about it too much, but when there, it becomes very real and very scary.
Yesterday, I went in for the remainder of the testing...nuclear cardiology--they withdrew some of my blood, mixed it with a radioactive material, injected it back into me and then pictures were taken of my heart, the goal being to make sure my heart can withstand the clinical trial drugs. I passed that one the last time I had it, so I'm pretty sure I passed it this time. Then I had bloodwork and an EKG, and hopefully all is well there, but I think it is. I didn't see Dr. Michaelson, but instead met with his RNP, Kara--and Carol, the gal who works with the clinical study. They had the results of the CT scan that I had on Monday and there is no problem with anything disturbing the sciatic nerve...I was so glad to hear that...I guess I'm just having a sciatic nerve episode again. The other findings were that the lymph nodes have gotten bigger. Kara said that they are not "marching" along, but are "creeping steadily, letting us know that they're there". While I had hoped that they had stayed the same size, at least they were not growing at a super-aggressive rate. They are also looking at an enlarged node in my neck...I feel like a time bomb, ticking..ticking..ticking.
Kara and Carol were great--they told me that they are so on my side in this fight, that they will be there for me for anything I need, or to answer any questions. I told them that I'm not giving up, that the fight has just begun, and they totally agreed and told me that there are so many things happening in cancer research--the longer I stick around, the better the chances are that there will be more options coming for RCC. I told them that I am now eating a vegan diet, and that I'm meeting with a holistic oncologist in the next couple of weeks. They were thrilled that I am doing everything that I possibly can on my end and were very encouraging. We hugged and said our goodbyes...these women are so compassionate and warm...their job is a difficult one. I am so grateful to have them fighting the fight with me....
My point is...it's becoming so routine for me to run into MGH--too routine for my taste, but--what can you do...thank goodness there are such fantastic institutions around to help us when our good health fails us. I know my way around MGH now and the Yawkey Cancer Center, not accomplishments I aspired to. Each time I'm there, reality sets in...it's way easier when you're away from there and working/playing in your usual environment, to put that culprit away and not think about it too much, but when there, it becomes very real and very scary.
Yesterday, I went in for the remainder of the testing...nuclear cardiology--they withdrew some of my blood, mixed it with a radioactive material, injected it back into me and then pictures were taken of my heart, the goal being to make sure my heart can withstand the clinical trial drugs. I passed that one the last time I had it, so I'm pretty sure I passed it this time. Then I had bloodwork and an EKG, and hopefully all is well there, but I think it is. I didn't see Dr. Michaelson, but instead met with his RNP, Kara--and Carol, the gal who works with the clinical study. They had the results of the CT scan that I had on Monday and there is no problem with anything disturbing the sciatic nerve...I was so glad to hear that...I guess I'm just having a sciatic nerve episode again. The other findings were that the lymph nodes have gotten bigger. Kara said that they are not "marching" along, but are "creeping steadily, letting us know that they're there". While I had hoped that they had stayed the same size, at least they were not growing at a super-aggressive rate. They are also looking at an enlarged node in my neck...I feel like a time bomb, ticking..ticking..ticking.
Kara and Carol were great--they told me that they are so on my side in this fight, that they will be there for me for anything I need, or to answer any questions. I told them that I'm not giving up, that the fight has just begun, and they totally agreed and told me that there are so many things happening in cancer research--the longer I stick around, the better the chances are that there will be more options coming for RCC. I told them that I am now eating a vegan diet, and that I'm meeting with a holistic oncologist in the next couple of weeks. They were thrilled that I am doing everything that I possibly can on my end and were very encouraging. We hugged and said our goodbyes...these women are so compassionate and warm...their job is a difficult one. I am so grateful to have them fighting the fight with me....
Tuesday, August 5, 2008
Early CT scan...
I had a CT scan yesterday...was supposed to have it on Thursday along with some other tests, in preparation for my clinical study, but the sciatic nerve pain was so bothersome that I decided to call and at least get that done earlier, so that they can look and see if there's anything going on--before I go to Eagle Camp. I'll have the rest of the testing done on Thursday, as well as seeing Dr. Michaelson. It was a contrast CT scan which means I had to drink two of the yummy (not) contrast drinks. By the time I left there, I felt really horrible....so bloated and uncomfortable, along with the sciatica problem. YIKES, I felt like a physical wreck. It was a long night, taking a long time for that bloated feeling go away--my gut felt as if there was a battle going on in there. I was in bed by 8:15 and got a few hours of good sleep, then the sciatic pain woke me up again...it is just relentless and is impossible to get comfortable. The good news is that I feel good today, the war in my gut has ended and the sciatic pain has been much less today, almost (dare I say it?) non-existent. I don't really know why, but there it is, and I'll go with that. More tests on Thursday and news on the CT scan...now that I feel better, I feel more hopeful that the sciatic thing is just that, a flare-up that comes and goes...gone would be good!
Saturday, August 2, 2008
Happiness is....
I went to Vermont this weekend...again! Who can get enough of spending time with my darling grandchild, Maia...I left on Friday and came home tonight. Actually, the Eliason's, my daughter-in-law's family, were here from Utah for the week, and I wanted to catch a visit with them--they are just the best people. How fortunate is my son to--not only have married Kristeen, but also to have inherited her entire family who love him unconditionally. We went to Shelbourne Farm where the 4 little cousins saw 7 brand new piglets, learned how to milk a goat, petted some cows and spent some joyful hours together. Later, we all went to the Vermont State Fair about 40 minutes North of Burlington. They went on some of the rides, won some prizes, petted more cows and had a grand time. I love watching little kids together...and these are 4 very darling little children, Madison, Alex, Maia and Lane. Today, we went to the Farmer's Market on Church Street in Burlington...they splashed in the fountain, we shopped around; then I took off to do a couple of errands and headed home.
I also spent a couple of hours last night with my niece Courtney, who is on the waitstaff at Eagle Camp for the summer, up on the Grand Isle of Lake Champlain. My sisters and I dropped her off 6 weeks ago, and now she seems like a different person...so poised, confident, making decisions about her future. What an experience this has been for her at Eagle Camp! She has worked 7 days a week, with only 1 day off so far, has made lifelong friends, is making great money that she doesn't have time to do anything with, other than to bank it...she has had a wonderful experience...I am so happy for her. It was so fun listening to her excitement, realizing how she has grown up just in these past few weeks...she's the best.
When I arrived in Plymouth, I came into my house and immediately opened the back porch door to let in some air. Soon, it started pouring rain and as I stood on the porch and looked out towards the ocean, the smell of the salt water and air was overwhelming...it almost felt as if I was on the beach. It was fresh, salty, moist, foggy, damp, wet...all of that, and I wanted to bottle it...it was so great. It made me realize that I am happy...in spite of what is going on. Maybe I am compartmentalizing or partitioning or whatever (denial??), but really, I am not dwelling on my situation (all right, maybe sometimes), and am doing the things I have always done that bring me joy....and that is just everyday living--spending time with my family, extended family, and friends, lots of laughing and again realizing that joy, for me, is simplicity...
I also spent a couple of hours last night with my niece Courtney, who is on the waitstaff at Eagle Camp for the summer, up on the Grand Isle of Lake Champlain. My sisters and I dropped her off 6 weeks ago, and now she seems like a different person...so poised, confident, making decisions about her future. What an experience this has been for her at Eagle Camp! She has worked 7 days a week, with only 1 day off so far, has made lifelong friends, is making great money that she doesn't have time to do anything with, other than to bank it...she has had a wonderful experience...I am so happy for her. It was so fun listening to her excitement, realizing how she has grown up just in these past few weeks...she's the best.
When I arrived in Plymouth, I came into my house and immediately opened the back porch door to let in some air. Soon, it started pouring rain and as I stood on the porch and looked out towards the ocean, the smell of the salt water and air was overwhelming...it almost felt as if I was on the beach. It was fresh, salty, moist, foggy, damp, wet...all of that, and I wanted to bottle it...it was so great. It made me realize that I am happy...in spite of what is going on. Maybe I am compartmentalizing or partitioning or whatever (denial??), but really, I am not dwelling on my situation (all right, maybe sometimes), and am doing the things I have always done that bring me joy....and that is just everyday living--spending time with my family, extended family, and friends, lots of laughing and again realizing that joy, for me, is simplicity...
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