"It was the best of times; it was the worst of times..."--the opening lines of A Tale of Two Cities by Charles Dickens, one of my favorite English writers. Since I last posted to my blog 1/22, I have experienced, for me, first the worst and now the best of times. As I wait to go up to Johns Hopkins 3/5 for my CT scan and to meet with Dr. Cameron, a surgeon and the "go to guy" for the Whipple Procedure, I am thinking back over the past 5 weeks reflecting on "the good and the bad."
I valiantly wore the chemo-infusion fanny pack from 1/23 to 1/27 and was able to move around pretty well. Steph was with me until Tuesday and it meant so much. She even went with me to my Welcome Back class at St. Joan of Arc Monday night along with my college buddy, Karen. Before I knew it, Tuesday morning we were at Mass and I had the sacrament of Reconciliation with Father Mike; it was a a transformative event for me. He also performed the Sacrament of Healing for me right after Mass and I felt so blessed. Hope started to re-appear for me even in the face of the week of chemo. When the pack came off that Friday, I went into a period of feeling very weak, always pre-nausious and uinterested in food. I missed our big school Soiree at the end of the semester, but I just couldn't get myself together to go--afraid I would get sick and have to leave. Not going also made me so sad since I miss my teacher friends so much.
I started to feel better near the beginning of February and my appetite came back! Folks from school kept bringing food and we started to eat part and freeze the other so we are all set for March! On February 6, I had radiation treatment #28--the final one and I came home, not just "glowing" from the radiation (at least Chuck says I glow!), but with a certificate in hand that I had completed this part of my treatment. I called up to Hopkins to let them know about the milestone, and Bonnie, Dr. Cameron's nurse said let's set up your CT for a month from then, March 5. That gives the body a chance to recover even though the chemo and radiation are still at work; when the doctor reviews the CT scan, he will know whether sugery is an option. My hope is that it will be.
My sisters have also always been right there with me throughout this process. We talked about another sister weekend and where did we want to go? What did I want? What I decided I wanted was for them to come to my house and "hang out" for the weekend of 2/10-12. Before we hung out, though, they all came down Friday in time to go with me (along with Chuck) to my doctor's appointment at 11 am! We all trooped in so that the little office expanded with Clawson girls talking and laughing! My doctor thought it was pretty amazing! She even had a doctor in training who witnessed it all--probably a first in her new career! We had a great weekend of being together. Saturday we went to the movies and met Chuck at Ruby Tuesdays for dinner at 5. That's when the magic started! We looked out the window and it was snowing--looked like a blizzard--so unbelieveable. We were able to drive home safely, thank goodness. I was all set to hit the hot tub so we all did--still snowing. It was so wonderful to look up at the sky with the snow coming down on our faces and the steam coming up from the tub. One memorable evening! Hope in the hot tub with sisters!
The next weekend we took a fast trip up to visit Steph, Marvin and the girls. Got there about noon on Saturday knowing that their area (Christiansburg) was due for a pretty big snow Sunday. We crammed a lot of family time in that short period. We had dinner I brought made by one of my wonderful teacher friends; we watched ET with the girls--their new favorite movie and simply enjoyed being a family. My love for them overwhelms me and their hope for me is contagious. I have some special cards they made for me that I have added to my "notebook" which not only has medical info but also anything else, such as their notes, that inspires me. We bolted on Sunday about 10 since the snow had started and we wanted to get ahead of it. We did. Came home to just rain in our area.
So, my blog entry tonight seems to be a little more experiencial rather than reflective, but I will end with me musing about what next Monday will bring. I have so much hope that the treatment and all of the many prayers will produce the "miracle" that we want. I'll have Steph and Chuck with me and whatever the news, we will move forward with the next steps. I am at peace and know that I am loved and cared for by many and by God.
Tuesday, February 28, 2012
Sunday, January 22, 2012
More than halfway through original treatment
I have actually been "musing" to myself for the past few weeks--even wrote down some notes all about last week, but it is a quiet, rainy Sunday morning and I'm determined to put thoughts to e-page to share where I am in my PC journey. I was quite excited to see that I now have four blog followers: my daughter, Steph, sister Etta, niece Hope and my wonderful student teacher from William and Mary last year, Jane!
Ok, so to get caught up with the week of 1/9 through 1/14 which I titled "A Week of Satisfaction" in my notes, I'll start with Monday, 1/9. As a part of your treatment through the Riverside Cancer Center, you are entitled to a massage once a month! So, on that Monday the 9th, I took advantage of the service thinking all during it how much massage is therapy. The objective is to totally relax and I did, letting all my concerns, stress, whatever drift away. Later in the day, I had radiation treatment #8 and came home to receive a fantastic homemade vegetable pot pie from one of my dear school friends, Shannan. She and Tanya have set up a special web site where people at school can sign up to bring Chuck and me a dish two to three times a week. How satisfying is that? Those folks who know me well, know that I can cook and "in my first life" did it quite a bit and pretty well. At this point in my life, however, fixing food is for basic survival so the gift of food from others is so totally appreciated!
Skipping along through the week to recap other moments of "satisfaction" would include Tuesday, 1/10 meeting with Father Mike at St. Joan of Arc for spiritual support, a fun lunch with my "old" college roomie, Karen (who has been by my side so often these past weeks) at our favorite restaurant in Yorktown, and then an afternoon of Mindful Yoga which transported me to a lovely, calm space in the tropics for an hour or so. Radiation #9--knocking them out. Wednesday was #10 and home to Baked Ziti from Tanya--yum. Great comfort food, for sure. Thursday #11, still feeling pretty good--a bit more tired but satisfied more than 1/3 through radiation. Friday was also a very satisfying day for me. I spoke with my principal since I had concerns about keeping my job and he very kindly assured me not to worry about that. He also discouraged me from coming up to school, which I really wanted to do since I miss folks, since there was a great deal of sickness going around, especially bronchitis, which I am very susceptible to. Radiation #12 at 3 pm and then the really fun part of this day was getting together with my OWL group from school to see a joyous movie and eat a delicious meal at The Vineyards. I notice I keep talking about food quite a bit, but the doctors and my nurse tell me to "eat" and don't lose weight! So while things sound good to me, I am following doctors' orders--especially when it comes to Italian food. The week ended on Saturday with the most satisfying event of all--the organization of my kitchen by Shannan! She arrived with a gourmet lunch of grilled cheese sandwiches, black bean soup and a cookie from Starbucks (more great food!) and then she proceeded to take everything out of the fridge, wash all the shelves (with Chuck's help) and put only the "allowable" food back in! It was such a sight to behold I took pictures and even texted them to friends I was so thrilled. Not to stop there, she attacked the pantry and an area of shelves above the stove that had gotten way out of control. Both areas are "Parade of Homes" ready; Chuck was so inspired he attached an organizing shelf to the pantry door which we have been going to add for the 11 years we have lived here. Whew, I am exhausted going back over all of this, but feeling very satisfied that things within my power were under control.
Now, let's talk about the week of 1/16 for which I took no notes. I felt I had accomplished so much the week before and expected I could keep up the pace, but not to happen. Suddenly, after Monday (even though Radiation #13 was fine), I lost steam and started to feel very overwhelmed about all of the things I kept thinking about that needed to be organized, put away or dealt with and I just couldn't face any of it. So except for my radiation appointments and making a few phone calls, the rest of the week I either watched tv, read or on a few occasions, went to the Wellness Center to bike for a half hour or so. Thursday night poor Chuck got the brunt of a breakdown where I rambled on, yelled some, cried some and then just let it all go. He has been my rock althouth, as many women can attest, as a husband he is not usually able to read my mind and that is sometimes annoying! He is doing his best though.
Then Friday morning, my wonderful daughter Steph got up at 5 am (not an easy thing for her to do!) and came all the way from Christiansburg (4 1/2 hour drive) to be with my for my oncologist appointment that morning. She was with me and had her questions ready along with mine and we had a very productive session with the doctor. I will do the second round of "fanny pack chemo" starting Monday which will go through Friday when the pack will be removed. My radiation continues every day (except weekends) until 2/6. At that point, we have to play a waiting game to allow these treatments to continue working "their magic" in reducing the tumor. My doctor here is going to contact Dr. Cameron at Johns Hopkins to see if he wants to do the follow up CT scan there or if it can be done here, sent up to him to review, and then the decision be made about whether or not the surgery is possible. We are hoping, praying that the treatments will allow it. If so, I will go up to Johns Hopkins sometime in March for the surgery.
This weekend has been rainy and we have been "lazing around" much of Saturday (did go to 5:30 mass--reconnected with a long-lost friend--so great to see her), but today we are quietly working on getting my "mound" of paperwork, since last November14, organized. I think a good day for soup--of course this entry would have to end on a note of food!
Ok, so to get caught up with the week of 1/9 through 1/14 which I titled "A Week of Satisfaction" in my notes, I'll start with Monday, 1/9. As a part of your treatment through the Riverside Cancer Center, you are entitled to a massage once a month! So, on that Monday the 9th, I took advantage of the service thinking all during it how much massage is therapy. The objective is to totally relax and I did, letting all my concerns, stress, whatever drift away. Later in the day, I had radiation treatment #8 and came home to receive a fantastic homemade vegetable pot pie from one of my dear school friends, Shannan. She and Tanya have set up a special web site where people at school can sign up to bring Chuck and me a dish two to three times a week. How satisfying is that? Those folks who know me well, know that I can cook and "in my first life" did it quite a bit and pretty well. At this point in my life, however, fixing food is for basic survival so the gift of food from others is so totally appreciated!
Skipping along through the week to recap other moments of "satisfaction" would include Tuesday, 1/10 meeting with Father Mike at St. Joan of Arc for spiritual support, a fun lunch with my "old" college roomie, Karen (who has been by my side so often these past weeks) at our favorite restaurant in Yorktown, and then an afternoon of Mindful Yoga which transported me to a lovely, calm space in the tropics for an hour or so. Radiation #9--knocking them out. Wednesday was #10 and home to Baked Ziti from Tanya--yum. Great comfort food, for sure. Thursday #11, still feeling pretty good--a bit more tired but satisfied more than 1/3 through radiation. Friday was also a very satisfying day for me. I spoke with my principal since I had concerns about keeping my job and he very kindly assured me not to worry about that. He also discouraged me from coming up to school, which I really wanted to do since I miss folks, since there was a great deal of sickness going around, especially bronchitis, which I am very susceptible to. Radiation #12 at 3 pm and then the really fun part of this day was getting together with my OWL group from school to see a joyous movie and eat a delicious meal at The Vineyards. I notice I keep talking about food quite a bit, but the doctors and my nurse tell me to "eat" and don't lose weight! So while things sound good to me, I am following doctors' orders--especially when it comes to Italian food. The week ended on Saturday with the most satisfying event of all--the organization of my kitchen by Shannan! She arrived with a gourmet lunch of grilled cheese sandwiches, black bean soup and a cookie from Starbucks (more great food!) and then she proceeded to take everything out of the fridge, wash all the shelves (with Chuck's help) and put only the "allowable" food back in! It was such a sight to behold I took pictures and even texted them to friends I was so thrilled. Not to stop there, she attacked the pantry and an area of shelves above the stove that had gotten way out of control. Both areas are "Parade of Homes" ready; Chuck was so inspired he attached an organizing shelf to the pantry door which we have been going to add for the 11 years we have lived here. Whew, I am exhausted going back over all of this, but feeling very satisfied that things within my power were under control.
Now, let's talk about the week of 1/16 for which I took no notes. I felt I had accomplished so much the week before and expected I could keep up the pace, but not to happen. Suddenly, after Monday (even though Radiation #13 was fine), I lost steam and started to feel very overwhelmed about all of the things I kept thinking about that needed to be organized, put away or dealt with and I just couldn't face any of it. So except for my radiation appointments and making a few phone calls, the rest of the week I either watched tv, read or on a few occasions, went to the Wellness Center to bike for a half hour or so. Thursday night poor Chuck got the brunt of a breakdown where I rambled on, yelled some, cried some and then just let it all go. He has been my rock althouth, as many women can attest, as a husband he is not usually able to read my mind and that is sometimes annoying! He is doing his best though.
Then Friday morning, my wonderful daughter Steph got up at 5 am (not an easy thing for her to do!) and came all the way from Christiansburg (4 1/2 hour drive) to be with my for my oncologist appointment that morning. She was with me and had her questions ready along with mine and we had a very productive session with the doctor. I will do the second round of "fanny pack chemo" starting Monday which will go through Friday when the pack will be removed. My radiation continues every day (except weekends) until 2/6. At that point, we have to play a waiting game to allow these treatments to continue working "their magic" in reducing the tumor. My doctor here is going to contact Dr. Cameron at Johns Hopkins to see if he wants to do the follow up CT scan there or if it can be done here, sent up to him to review, and then the decision be made about whether or not the surgery is possible. We are hoping, praying that the treatments will allow it. If so, I will go up to Johns Hopkins sometime in March for the surgery.
This weekend has been rainy and we have been "lazing around" much of Saturday (did go to 5:30 mass--reconnected with a long-lost friend--so great to see her), but today we are quietly working on getting my "mound" of paperwork, since last November14, organized. I think a good day for soup--of course this entry would have to end on a note of food!
Saturday, January 7, 2012
Marking my First Treatment Goal: Radiation 1/4 done!
I didn't really grow up "setting goals" or "making new year's resolutions" but looking back, I think my parents imbued in me an instinctual sense of "getting things done and marking the moment when you are done."
My Catholic upbringing, which came from mom, with weekly mass and catechism classes (homework, too, no less!) created a rhythm, routine and expectation which I believe has served me well over the years. Dad had a very strong work ethic and his example of how you could accomplish whatever you want with hard work and a plan truly influenced me.
Born on a farm in Ohio, he early on knew he did not want to remain there and become a farmer. He found work at J.C. Penney as a stock boy and many years later became a very successful manager of the first J.C. Penney store opened in Richmond. I remember reading all of the books that Mr. Penney wrote about his founding of his store, especially Main Street Merchant and being inspired by the courage, initiative and hard work it took to realize his plan for a general store that would serve people in a little town in Wyoming. That plan would grow into a huge company, one store at a time with people like my dad at the helm. I have what I call "atta boy" letters hand-typed by Mr. Penney to my dad acknowledging his accomplishments with his store. Very simple letters with no flowery words but the personal support from "the president" was clearly evident. My dad saved the letters so I know they meant something to him. They now mean something to me, as well.
I share all of this in today's musing because ever since I met with my doctor and he shared his "plan" for treatment (I have his diagram on a piece of computer paper which I am saving!), I have been aware that there is a plan and that I need to celebrate getting things done. Some parts of the plan have been very painful--taking care of the jaundice, especially--and there have been other moments of pain this past month and a half, but with each step I could "check off" a part of the plan and that somehow has given me solace and a sense of accomplishment.
So, yesterday when I finished my 7th radiation treatment and the tech person wrote it on the card (I have a personalized treatment card with my picture, a check- in bar code and numbers that get initialed each visit), I had a sense of satisfaction that I was now one quarter of the way through my 28 radiation treatments.
Today, also, Chuck and I will finally "get things done" with all of the Christmas decorations! They all came down last weekend (except the tree--I wanted it up one more week to enjoy) and now we need to finish this "plan" and get it all back in the attic for next year's festivities. I am very much looking forward to next year's Christmas and the New Year 2013!!
My Catholic upbringing, which came from mom, with weekly mass and catechism classes (homework, too, no less!) created a rhythm, routine and expectation which I believe has served me well over the years. Dad had a very strong work ethic and his example of how you could accomplish whatever you want with hard work and a plan truly influenced me.
Born on a farm in Ohio, he early on knew he did not want to remain there and become a farmer. He found work at J.C. Penney as a stock boy and many years later became a very successful manager of the first J.C. Penney store opened in Richmond. I remember reading all of the books that Mr. Penney wrote about his founding of his store, especially Main Street Merchant and being inspired by the courage, initiative and hard work it took to realize his plan for a general store that would serve people in a little town in Wyoming. That plan would grow into a huge company, one store at a time with people like my dad at the helm. I have what I call "atta boy" letters hand-typed by Mr. Penney to my dad acknowledging his accomplishments with his store. Very simple letters with no flowery words but the personal support from "the president" was clearly evident. My dad saved the letters so I know they meant something to him. They now mean something to me, as well.
I share all of this in today's musing because ever since I met with my doctor and he shared his "plan" for treatment (I have his diagram on a piece of computer paper which I am saving!), I have been aware that there is a plan and that I need to celebrate getting things done. Some parts of the plan have been very painful--taking care of the jaundice, especially--and there have been other moments of pain this past month and a half, but with each step I could "check off" a part of the plan and that somehow has given me solace and a sense of accomplishment.
So, yesterday when I finished my 7th radiation treatment and the tech person wrote it on the card (I have a personalized treatment card with my picture, a check- in bar code and numbers that get initialed each visit), I had a sense of satisfaction that I was now one quarter of the way through my 28 radiation treatments.
Today, also, Chuck and I will finally "get things done" with all of the Christmas decorations! They all came down last weekend (except the tree--I wanted it up one more week to enjoy) and now we need to finish this "plan" and get it all back in the attic for next year's festivities. I am very much looking forward to next year's Christmas and the New Year 2013!!
Sunday, January 1, 2012
It's New Year's Day 2012
I'm sitting at our kitchen table enjoying the last few minutes of a wonderful holiday visit with Steph, Marvin, Callie and Maria! They have consolidated the many Christmas items, including 2 new bikes, in order to squeeze everything into their mini van to head home 4 1/2 hours to Christiansburg. Chuck just sat down and everyone is savoring soup, pasta or cheese and crackers as I savor the sweetness of having family all around me.
It's been some time since I have taken the time to "muse." It's been a wild ride since 11/14/11 when I first got the word that my life as I knew it would change. Now as 2012 begins, I am still feeling good and very thankful that my medical care has been so excellent and has finally started "moving." I was stymied in early December since the biopsy done in Richmond came back "inconclusive." We had to halt our plan to start radiation and chemotherapy since my oncologist needed a specific diagnosis. Fortunately my primary doctor was able to send me over to Virginia Beach to a gastroenteroligist who was fantastic and after a very painless biopsy process, got the diagnosis which he gave to me as "good news and bad"--good because we needed the diagnosis to move ahead with the treatment that the experts felt was necessary; bad because it did reveal the tumor was an adenocarcinoma.
Today I am completing 4 days of chemotherapy, but delivered, I think, in a very innovative way. The oncologist is using a drug called 5 FU and it is in a fanny pack dripping a small amount each hour through a port that was implanted 12/22; I have had a great deal of freedom to come and go even though I have stayed pretty close to home. A home health nurse is coming today to remove it. I also started radiation last Wednesday and have 25 more of those treatments. They are only for 15 minutes each day (M-F) at 3:15. I will have one more round of the chemotherapy "fanny pack drip" 1/23-26 and then there will be some testing to see where we are. My wish and hope is that surgery will then be possible. If it is, I will go up to Johns Hopkins to Dr. John Cameron, well known in his field, for surgery.
So, I think that catches me up on the details of my life since I last wrote. My main "musing" for right now is how very grateful I am for everyone in my life. So many prayers, cards, emails, texts and personal calls plus visits make me feel so loved and cared about. I continue to be inspired by other people's stories and successes and am keeping an "inspiration" file at the heart of which is a special note from Lance Armstrong and his whole staff plus 4 yellow bracelets that Steph, Marvin, Chuck and I are wear reminding us to "Livestrong." Take care. Love always.
It's been some time since I have taken the time to "muse." It's been a wild ride since 11/14/11 when I first got the word that my life as I knew it would change. Now as 2012 begins, I am still feeling good and very thankful that my medical care has been so excellent and has finally started "moving." I was stymied in early December since the biopsy done in Richmond came back "inconclusive." We had to halt our plan to start radiation and chemotherapy since my oncologist needed a specific diagnosis. Fortunately my primary doctor was able to send me over to Virginia Beach to a gastroenteroligist who was fantastic and after a very painless biopsy process, got the diagnosis which he gave to me as "good news and bad"--good because we needed the diagnosis to move ahead with the treatment that the experts felt was necessary; bad because it did reveal the tumor was an adenocarcinoma.
Today I am completing 4 days of chemotherapy, but delivered, I think, in a very innovative way. The oncologist is using a drug called 5 FU and it is in a fanny pack dripping a small amount each hour through a port that was implanted 12/22; I have had a great deal of freedom to come and go even though I have stayed pretty close to home. A home health nurse is coming today to remove it. I also started radiation last Wednesday and have 25 more of those treatments. They are only for 15 minutes each day (M-F) at 3:15. I will have one more round of the chemotherapy "fanny pack drip" 1/23-26 and then there will be some testing to see where we are. My wish and hope is that surgery will then be possible. If it is, I will go up to Johns Hopkins to Dr. John Cameron, well known in his field, for surgery.
So, I think that catches me up on the details of my life since I last wrote. My main "musing" for right now is how very grateful I am for everyone in my life. So many prayers, cards, emails, texts and personal calls plus visits make me feel so loved and cared about. I continue to be inspired by other people's stories and successes and am keeping an "inspiration" file at the heart of which is a special note from Lance Armstrong and his whole staff plus 4 yellow bracelets that Steph, Marvin, Chuck and I are wear reminding us to "Livestrong." Take care. Love always.
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