5/26/13--Sunday--Day 225--Starting It Over Again.......
Wednesday afternoon we headed to Mesa to start the second chemo session of phase two. After this three-week routine, that puts only two more treatments and six more weeks before chemo is all done! We headed over Wednesday because I had my checkup with Dr. Matt, my ovarian gynecology oncology surgeon. I will see him every three months now through January of 2014 and then every four months through 2014 and a bunch more but less often after that over the next five years. This time he ran my first tumor markers. Tumor markers are a blood test that help in tracing if certain types of tumors may be growing back. They are not a sure thing, but they can help in early diagnosis over time. Anything under 36 is good, and mine was at 19 for ovarian tumors so that was something to celebrate. I'm not sure why they are not doing breast tumor markers yet, but I assume they will wait until after the chemo is over at this point.
After the doctor's visit, we spent a great evening taking Preston to dinner at Texas Roadhouse and then to see the movie, Star Trek. Dinner tasted fabulous. My taste started returning on Monday, and by Tuesday I had Greg take me to Casa where I could actually taste everything for the first time in almost three weeks. So since I assumed I would only have two days of tasting, I enjoyed eating at two of my favorite places.
After enjoying a night with Preston, we headed for chemo number two first thing on Thursday morning. Though Dr. Cianfrocca usually sees patients each time during this phase of chemo, we knew she would be out of town for this one. We set an appointment for the previous Monday in case I was having lots of trouble and needed to see her, but planned on canceling from the beginning, which we did. Fortunately for me, Heather was in labs for the morning and, like always, she accessed my port first time. And then I got double lucky because she headed to the infusion floor and was stationed right next to Cheryl for the day so I was able to visit with both of them. I've missed seeing them weekly. I told them staying in Safford that first Thursday since January I found myself almost lost with what to do. I've grown close to both Heather and Cheryl and appreciate what a great job they both do professionally, but more importantly, I appreciate them as people. We have shared personal stories about our lives, their children and family, and I feel like we've become friends. There is a trust and reassurance that they care about me as a person, and that makes going to see both of them so much better.
Before we started, I explained to Cheryl my funny, scary, and strange experiences and side effects from the last three weeks. I could tell by the look on her face that she knew all of this before I even told her my stories, and when I asked her, she admitted she knew this would be part of my new regiment before I left last time. Of course she did. What she says, and sometimes what she doesn't say, is what makes her so wonderful.
While we were waiting for my labs to come back, the acupuncture doctor came by. This is a new, free service MD Anderson has started offering for patients. I've seen him talking to others before about nausea, but since I haven't had much nausea, I've haven't really paid too much attention. When he started talking to me, I found out he had treatments for neuropathy, (numb feet) so that might be worth a shot. Cheryl was a little concerned over the swelling of my feet and hands, and, to have the acupuncture treatments, you have to have an okay from your physician, so Cheryl called Mary, a PA whom I hadn't met. Mary didn't want me to have the acupuncture this time because of the swelling and decided to give me Lasix, something that was supposed to make me go potty a lot and drain some of the fluid so we did that instead. Mary eventually came up to the infusion floor and met with me personally, which was really nice. She was supper sweet and is was nice to get to know her story. After see the swelling, she said acupuncture would be okay, but we decided to maybe try it next time. While sitting there, I also talked with a patient in the next cubby who said he had numb feet while on the 5-FU. That was a little encouraging because that means this is not just left over from the Taxol and may still not be permanent. We'll see how it goes during this next three weeks.
Treatment was long again. There are just so many medicines now. We didn't leave until late afternoon and this time I had to drive a vehicle home because Preston had driven the Prius to Mesa from the lake to have some work done on it. We knew from the first treatment I felt pretty good, better than with the Taxol, so we knew I would be fine getting home. I guess all the steroids help those first three days. I made it home without incident, and though I did potty a little more, it wasn't red this time.
I went to work on Friday, and though I was a little tired, all went well. Friday afternoon, we headed to Albuquerque for the weekend. Our good friend Suzie had some surgery on Tuesday and we wanted to go to support her. She was so absolutely wonderful helping me during my surgeries. It was the least I could do. Plus, there was a ballooning competition this weekend and I had hoped to have enough energy to ride along on Steven Adams' chase crew. I knew the three days of steroids would give me some energy. Preston and Yuri really wanted to come since they weren't able to make the October balloon fiesta so they met us there. And Greg went ballooning with us every morning this time so between him, Preston, and Yuri, I brought stand-ins to represent Arizona on the chase crew. Saturday morning I did pretty good helping on the smaller tasks. This morning was a little more of a struggle, but after taking a good long nap today, I feel much better this afternoon. Tomorrow morning we have one more flight and then we'll have some breakfast and take a leisurely ride home.
So far this round of chemo the major side effect has been seeing my taste fade quickly. Yesterday morning I could taste a sip of Greg's chocolate milk but by this morning I couldn't. Protein still seems to get through as we had smoked brisket last night with an amazing Rudy's barbecue sause that I could clearly taste. And we had steaks for lunch today which had some taste still. I can still taste my strawberries and fluff, so that's good. Cheryl did tell me MD Anderson actually has a service by one of their chefs who will help do taste-testing to see what tastes gets through. Being out of town, I doubt we would ever use it, but it is definitely another nice way they try to help. She also said each time it could be different tastes that get through, so that could be odd. So far it seems to be about the same. I can't taste sugar or sweets at all, which isn't a bad thing, so it seems to be following the same pattern.
So, this will be round two of four, which is encouraging and I am definitely prepared this go round, so I'm hoping the stress and anxiety will be much less. Thank you to all of the readers of this blog, my family, friends, and co-workers who helped me and supported me through these last three scary weeks. It was definitely the worst part of this since the surgeries. I appreciate the comments made on the blog, the text messages, and the emails. You all have no idea just how important that support has been to get me through this. Your comments have been so encouraging! I don't know what I would do if this was just Greg and I trying to support each other all alone. We both get down sometimes and your support to both of us has been awesome and more appreciated than you could possibly know. So hang in there with us as we undergo these next three weeks Starting It All Over Again.......
Sunday, May 26, 2013
Sunday, May 19, 2013
Living With The Side Effects.........
5/19/13--Sunday--Day 218--It Is What It Is
I am three days into my third week, the week my blood cells are supposed to be repairing and rebuilding enough to do this all over again come Thursday. These last three weeks have been quite a ride. I am so glad I blogged about the scary and challenging days so when I go back through this again, I can re-read my posts and remember I can survive the side effects.
Week two brought pretty challenging fatigue, swollen feet and hands, and absolutely no return of my tastebuds or appetite. I continue to be thankful that I have a job done mostly sitting at a computer because throughout the week, the littlest bit of exertion some days completely wiped me out. Monday I was reminded that my taste had not returned when I attended a luncheon at a Mexican restaurant and still couldn't really tasted much. Even now, my tastes is extremely limited. The good thing is, I can't tasted foods like chips, ice cream, chocolate, sweets, candy or even popcorn so I don't snack at all. Strawberries and fluff still have an uncanny attraction so I've stocked up on cream cheese and marshmallow. With the fatigue this week, I have tried to eat protein hoping that would help, plus, meat seems to have some flavor for me.
As for the fatigue, most of the week I worked through lunch then left the office fully exhausted only to come home and fall asleep in the recliner for a few hours. Thursday, we decided to try a walk after work. That was difficult. Before we made it back, I hit that wall of fatigue and ended up standing in a field crying and frustrated, but we finally made it. Friday wasn't much better. At lunch, I tried to do some grocery shopping, something that has been a huge challenge. We thought it might be easier at lunch than after working all day, but, by the time I was walking to the car, I was in tears once again. I don't know why the fatigue brings tears, but they just start, and I can't really control them. Greg has been so amazingly patient. I feel so badly for him. He has been right by my side every day supporting me, encouraging me, and helping me face everything from pain to fear to fatigue. I don't know what I would do without him.
My feet and hands have also experienced quite a bit of swelling. I've never had trouble with my ankles swelling in the past, but much of week one and some of week two I couldn't see my ankle bone. When my hands first started swelling, I took two of my rings off, thank goodness.
Saturday we decided to try a day-trip to the lake. Greg's dad, Randall, joined us and Preston and Yuri met us there. I stayed under the canope driving the boat most of the day. By early afternoon I was pretty tired, but was able to hang in there for the rest of the day. We left by 3 after a great day watching Greg, Preston and Yuri ski, air chair, and wake surf. When we got home I slept several hours, but I was really glad we went. I didn't get in the lake, first, because it was cold, but also because I was just a little worried about being susceptible to infections or something. Plus, with me being so cold all of the time anyway, I was too cold to get colder. The coldness isn't nearly as bad as it was on Taxol, but I am still colder than normal most of the time, especially my feet. I stayed wrapped in a coverup and towels most of the day at the lake, but my feet seemed cold all day. My feet have actually been bothering me A LOT! They are still very numb, yet very sensitive. It's hard to explain other than the pins and needles you feel when you first walk on feet that have fallen asleep. I feel that all of the time so walking is sometimes like walking on a shoe full of sharp rocks. I'm still keep hoping that it is temporary and will eventually go away.
Today, Sunday, I notice my right hand and arm were swollen quite a bit. I'm afraid lymphedema may have finally caught up to me, despite all of my efforts to avoid it. Greg does the lymphatic massage every day in the shower; I haven't eaten salt since January; I wear gloves when I do any kind of work with chemicals or even to wash dishes; and most difficult, I have completely avoided the hot tub. Despite all of this, today my hand is swollen so much that I could hardly put on my dish gloves. Once I notice, I had Greg help me put the sleeve and glove on and I wore it all day. By this evening, when I took it off, the swelling continues and I can hardly see my knuckles. I am so very sad about this new issue. One of the side effects of 5-FU, one of the chemotherapy drugs, is something called Hand-Foot Syndrome, which is also characterized by swelling. It would be great if this were that, but because the swelling is only on my right side, I'm not sure if this is Hand-Foot Syndrome or the Lymphedema. I will call the doctor in the morning.
I did start the day with more energy than I've felt in three weeks; however, after doing a few chores around the house, just after putting my sleeve and glove on, a wave of fatigue sent me to sleep in the recliner again, but only for about 45 minutes this time. This afternoon we did manage to go see a movie, The Great Gatsby. I couldn't help but think that every college prep English student I taught in the 80's and 90's has to be thinking of my class when they see that advertised or see the movie. It was a nice break from my current reality and lots of reminiscing of the many years I taught that book and all of the symbolism in it. And to end the day, I had a great visit with my friend and one of my former yearbook editors, Shawna Brown Kruglar, who was in town for the weekend. It was nice to spend some time with her, her parents, her husband, and her three beautiful children, one whom she named Lindsey after me. That always makes me smile. I loved watching her beautiful girls, five and seven, play, as well as her son who has grown so much.
Emotionally, it has been a very challenging few weeks. Greg has really struggled as well. He seems to somehow feel some of the same things I do--sympathy pains I guess. I know we both have been emotionally challenged by this. I did do something that was really hard for me but important. We had insurance sign-up at work two days this week. That is when everyone in the district comes to the District office sometime during those two days and signs up for insurance. I took a picture of me from last October, and another of me from this month with my bald head. I placed the pictures side-by-side. Above the pictures I wrote, "Considering Cancer Insurance? Think Hard. I'm Susan Lindsey and I'm 48. No one in my family had cancer." I printed and framed the picture and took it to my friend, Jim, the AFLAC representative, to display as people came by to see him. It was tough because I haven't really shown "the public" my bald head. I always wear hats or scarfs. But it was such an important cause to help people really consider getting a cancer policy, so I decided to do it. It was one positive thing I felt like I could do because of cancer.
So after this really tough couple of weeks, and an exceptionally tough Friday, one thing that finally settled in with me this weekend is simply, "It is what it is." I know that probably sounds trite, but for the first time, deep down inside, I've realized I just have to accept whatever this whole thing brings with it, no matter what that is. Sometimes that is really, really hard. I feel so ugly most of the time, and now I have this swollen arm. I've also lost several chunks of eye lashes and fear I may lose them all, which is about all of the female left of me. I've been frustrated by the look of my right breast as it has started to pucker and sink in around the scar, and it is so much smaller than the left. It's easy to get down and frustrated, but for some reason, this weekend, I took a deep breath and just realized, "It is what it is," and really, there is absolutely nothing I can do about it but survive and get through it. So, as ugly as I feel, as awful as these side effects are, I am alive and I want to stay alive--I want to kick this thing. A co-worker stopped by my office this week. While we have talked on the phone several times this year, he had no idea I had cancer until he saw my picture at the AFLAC table during insurance sign-up. He came to my office to tell me how sorry he was and that he had no idea I had cancer. And then he told me he lost his 48 year old sister to breast cancer in February after she fought it for two years. "She did everything right," he said, "but the treatments just weren't enough and it came back and took her." My heart sank. I realized this weekend that no matter what happens to me, nothing is as important as surviving. I want to live--ugly, scarred, swollen arm, numb feet--no matter how hard it is, none of it really matters as long as I live. I am 48 years young and as hard as this all has been, it is time for me to accept all of the side effects of cancer because honesty, "It is what it is" and survival is all that really matters.
I am three days into my third week, the week my blood cells are supposed to be repairing and rebuilding enough to do this all over again come Thursday. These last three weeks have been quite a ride. I am so glad I blogged about the scary and challenging days so when I go back through this again, I can re-read my posts and remember I can survive the side effects.
Week two brought pretty challenging fatigue, swollen feet and hands, and absolutely no return of my tastebuds or appetite. I continue to be thankful that I have a job done mostly sitting at a computer because throughout the week, the littlest bit of exertion some days completely wiped me out. Monday I was reminded that my taste had not returned when I attended a luncheon at a Mexican restaurant and still couldn't really tasted much. Even now, my tastes is extremely limited. The good thing is, I can't tasted foods like chips, ice cream, chocolate, sweets, candy or even popcorn so I don't snack at all. Strawberries and fluff still have an uncanny attraction so I've stocked up on cream cheese and marshmallow. With the fatigue this week, I have tried to eat protein hoping that would help, plus, meat seems to have some flavor for me.
As for the fatigue, most of the week I worked through lunch then left the office fully exhausted only to come home and fall asleep in the recliner for a few hours. Thursday, we decided to try a walk after work. That was difficult. Before we made it back, I hit that wall of fatigue and ended up standing in a field crying and frustrated, but we finally made it. Friday wasn't much better. At lunch, I tried to do some grocery shopping, something that has been a huge challenge. We thought it might be easier at lunch than after working all day, but, by the time I was walking to the car, I was in tears once again. I don't know why the fatigue brings tears, but they just start, and I can't really control them. Greg has been so amazingly patient. I feel so badly for him. He has been right by my side every day supporting me, encouraging me, and helping me face everything from pain to fear to fatigue. I don't know what I would do without him.
My feet and hands have also experienced quite a bit of swelling. I've never had trouble with my ankles swelling in the past, but much of week one and some of week two I couldn't see my ankle bone. When my hands first started swelling, I took two of my rings off, thank goodness.
Saturday we decided to try a day-trip to the lake. Greg's dad, Randall, joined us and Preston and Yuri met us there. I stayed under the canope driving the boat most of the day. By early afternoon I was pretty tired, but was able to hang in there for the rest of the day. We left by 3 after a great day watching Greg, Preston and Yuri ski, air chair, and wake surf. When we got home I slept several hours, but I was really glad we went. I didn't get in the lake, first, because it was cold, but also because I was just a little worried about being susceptible to infections or something. Plus, with me being so cold all of the time anyway, I was too cold to get colder. The coldness isn't nearly as bad as it was on Taxol, but I am still colder than normal most of the time, especially my feet. I stayed wrapped in a coverup and towels most of the day at the lake, but my feet seemed cold all day. My feet have actually been bothering me A LOT! They are still very numb, yet very sensitive. It's hard to explain other than the pins and needles you feel when you first walk on feet that have fallen asleep. I feel that all of the time so walking is sometimes like walking on a shoe full of sharp rocks. I'm still keep hoping that it is temporary and will eventually go away.
Today, Sunday, I notice my right hand and arm were swollen quite a bit. I'm afraid lymphedema may have finally caught up to me, despite all of my efforts to avoid it. Greg does the lymphatic massage every day in the shower; I haven't eaten salt since January; I wear gloves when I do any kind of work with chemicals or even to wash dishes; and most difficult, I have completely avoided the hot tub. Despite all of this, today my hand is swollen so much that I could hardly put on my dish gloves. Once I notice, I had Greg help me put the sleeve and glove on and I wore it all day. By this evening, when I took it off, the swelling continues and I can hardly see my knuckles. I am so very sad about this new issue. One of the side effects of 5-FU, one of the chemotherapy drugs, is something called Hand-Foot Syndrome, which is also characterized by swelling. It would be great if this were that, but because the swelling is only on my right side, I'm not sure if this is Hand-Foot Syndrome or the Lymphedema. I will call the doctor in the morning.
I did start the day with more energy than I've felt in three weeks; however, after doing a few chores around the house, just after putting my sleeve and glove on, a wave of fatigue sent me to sleep in the recliner again, but only for about 45 minutes this time. This afternoon we did manage to go see a movie, The Great Gatsby. I couldn't help but think that every college prep English student I taught in the 80's and 90's has to be thinking of my class when they see that advertised or see the movie. It was a nice break from my current reality and lots of reminiscing of the many years I taught that book and all of the symbolism in it. And to end the day, I had a great visit with my friend and one of my former yearbook editors, Shawna Brown Kruglar, who was in town for the weekend. It was nice to spend some time with her, her parents, her husband, and her three beautiful children, one whom she named Lindsey after me. That always makes me smile. I loved watching her beautiful girls, five and seven, play, as well as her son who has grown so much.
Emotionally, it has been a very challenging few weeks. Greg has really struggled as well. He seems to somehow feel some of the same things I do--sympathy pains I guess. I know we both have been emotionally challenged by this. I did do something that was really hard for me but important. We had insurance sign-up at work two days this week. That is when everyone in the district comes to the District office sometime during those two days and signs up for insurance. I took a picture of me from last October, and another of me from this month with my bald head. I placed the pictures side-by-side. Above the pictures I wrote, "Considering Cancer Insurance? Think Hard. I'm Susan Lindsey and I'm 48. No one in my family had cancer." I printed and framed the picture and took it to my friend, Jim, the AFLAC representative, to display as people came by to see him. It was tough because I haven't really shown "the public" my bald head. I always wear hats or scarfs. But it was such an important cause to help people really consider getting a cancer policy, so I decided to do it. It was one positive thing I felt like I could do because of cancer.
So after this really tough couple of weeks, and an exceptionally tough Friday, one thing that finally settled in with me this weekend is simply, "It is what it is." I know that probably sounds trite, but for the first time, deep down inside, I've realized I just have to accept whatever this whole thing brings with it, no matter what that is. Sometimes that is really, really hard. I feel so ugly most of the time, and now I have this swollen arm. I've also lost several chunks of eye lashes and fear I may lose them all, which is about all of the female left of me. I've been frustrated by the look of my right breast as it has started to pucker and sink in around the scar, and it is so much smaller than the left. It's easy to get down and frustrated, but for some reason, this weekend, I took a deep breath and just realized, "It is what it is," and really, there is absolutely nothing I can do about it but survive and get through it. So, as ugly as I feel, as awful as these side effects are, I am alive and I want to stay alive--I want to kick this thing. A co-worker stopped by my office this week. While we have talked on the phone several times this year, he had no idea I had cancer until he saw my picture at the AFLAC table during insurance sign-up. He came to my office to tell me how sorry he was and that he had no idea I had cancer. And then he told me he lost his 48 year old sister to breast cancer in February after she fought it for two years. "She did everything right," he said, "but the treatments just weren't enough and it came back and took her." My heart sank. I realized this weekend that no matter what happens to me, nothing is as important as surviving. I want to live--ugly, scarred, swollen arm, numb feet--no matter how hard it is, none of it really matters as long as I live. I am 48 years young and as hard as this all has been, it is time for me to accept all of the side effects of cancer because honesty, "It is what it is" and survival is all that really matters.
Monday, May 13, 2013
Finally, A Much Needed Break......
5/13/13--Monday--Day 212--Turning A Corner
FINALLY! I feel like I finally turned a corner this weekend on what has been one of the most difficult weeks since the surgeries. I'm sure part of the difficulty of the week has been being so scared as I experienced all of this unknown. And even though the side effects were challenging, hopefully knowing how to plan for the next three treatments will help me have less anxiety.
By Thursday morning my head had cleared up enough that I felt comfortable driving myself to work. I still worked through lunch since my appetite or taste had not improved at all. My dad had come earlier in the week so it was a nice relief to have him and Preston here. By the end of the day Thursday, I was super tired. I had put a roast on so I didn't have to worry about dinner, but when I got home, I had bigger worries. Greg was super sick. Thursday was the one week mark and the day Dr. C said my numbers would start to plummet and I would be at great risk as my immunity system would be compromised ....and Greg was upstairs puking. Oh my goodness our timing couldn't have been worse. I immediately put on a mask and must have washed my hands a hundred times in between trying to take care of him. The good news was he didn't seem to have a fever, but he looked bad as he was stuck on the toilet with diarrhea and leaning over a bucket. Luckily, by the end of the night, he still had no fever, no chills, no aches and, with the help of Pepto Bismo, he finished puking and felt much better. We determined it might have been food poisoning from KFC's gross boneless chicken we had tried the night before. Preston had felt poorly earlier in the day as had I, though I am hard to throw in the mix. Anyways, as a precaution, I slept downstairs, and the next morning we sterilized everything upstairs, but Greg was definitely better, thank goodness.
Friday, with the start of week two, I woke up dragging. If my blood counts had dropped, as predicted, I was definitely feeling the fatigue Dr. C had described I would. It was a push to go to work, and once I got there, a push to be productive, but I was. I finished my scheduled meetings and was working through lunch as normal when a knock on my door brought a huge, and much needed surprise. Mike and Suzie had come from Albuquerque to surprise me and that they did. I couldn't believe they were here and instantly broke in to tears. It had been such a horrible week, both physically and mentally, and I was facing my first Mother's Day without my mom and my grandma, and with Brooklyn being away. After drying tears, I left work early. We went to get a snow cone on the way home, which I laughed at because my taste was so bad, but suddenly, I could taste a little of the flavoring. I thought I had tasted a little of the grape jelly earlier that morning, but I definitely had a break though on some flavoring of the snow cone. My afternoon was getting even better.
I spent a much better-than-expected Mother's Day weekend surrounded by family (Greg, Preston and my dad) and close friends. It truly helped keep my mind off of my physical state and helped me face what could have been one of the most difficult days since my mother's death. Greg wanted to try a lake trip Saturday, but after doing a short bit of running around Friday afternoon, it was clear the fatigue I was experiencing was not going to let me do much activity so we opted for a relaxing weekend at home instead. Saturday, the fatigue continued so I rested in between a few short trips out, but much of the day was spent just hanging out, watching movies and playing games. As the weekend progressed, my tastebuds seemed to improve some. Friday night I actually experienced my first hunger pain, and my mouth actually burned a little from salsa, which were both welcome feelings. The biggest taste all weekend (which ended up being a craving) came from strawberries and fluff, which was a cream cheese and marshmallow dipping recipe. The funny thing is, I don't usually even really like strawberries, but whatever it was, I could taste strawberries and fluff better than anything. Sunday was the first day I woke up feeling good. I didn't have to sit down in between doing every little things, and I never hit that wall of fatigue, which I had hit both Friday and Saturday at some point.
So thanks to Preston and my dad being there, Brooklyn for spending time on the phone with me, and thanks to our amazing friends, Mike & Suzie, the end of my very difficult week finally came and I experienced some much-needed relief both physically and mentally. I am feeling good this morning. I still have to remind myself to drink because I have no thrust and my taste is still extremely limited, but I can so do this! I now know I can survive the next three treatments over the next ten weeks. I am so much more encouraged now and am so grateful about finally Turning a Corner!
Friday, with the start of week two, I woke up dragging. If my blood counts had dropped, as predicted, I was definitely feeling the fatigue Dr. C had described I would. It was a push to go to work, and once I got there, a push to be productive, but I was. I finished my scheduled meetings and was working through lunch as normal when a knock on my door brought a huge, and much needed surprise. Mike and Suzie had come from Albuquerque to surprise me and that they did. I couldn't believe they were here and instantly broke in to tears. It had been such a horrible week, both physically and mentally, and I was facing my first Mother's Day without my mom and my grandma, and with Brooklyn being away. After drying tears, I left work early. We went to get a snow cone on the way home, which I laughed at because my taste was so bad, but suddenly, I could taste a little of the flavoring. I thought I had tasted a little of the grape jelly earlier that morning, but I definitely had a break though on some flavoring of the snow cone. My afternoon was getting even better.
I spent a much better-than-expected Mother's Day weekend surrounded by family (Greg, Preston and my dad) and close friends. It truly helped keep my mind off of my physical state and helped me face what could have been one of the most difficult days since my mother's death. Greg wanted to try a lake trip Saturday, but after doing a short bit of running around Friday afternoon, it was clear the fatigue I was experiencing was not going to let me do much activity so we opted for a relaxing weekend at home instead. Saturday, the fatigue continued so I rested in between a few short trips out, but much of the day was spent just hanging out, watching movies and playing games. As the weekend progressed, my tastebuds seemed to improve some. Friday night I actually experienced my first hunger pain, and my mouth actually burned a little from salsa, which were both welcome feelings. The biggest taste all weekend (which ended up being a craving) came from strawberries and fluff, which was a cream cheese and marshmallow dipping recipe. The funny thing is, I don't usually even really like strawberries, but whatever it was, I could taste strawberries and fluff better than anything. Sunday was the first day I woke up feeling good. I didn't have to sit down in between doing every little things, and I never hit that wall of fatigue, which I had hit both Friday and Saturday at some point.
So thanks to Preston and my dad being there, Brooklyn for spending time on the phone with me, and thanks to our amazing friends, Mike & Suzie, the end of my very difficult week finally came and I experienced some much-needed relief both physically and mentally. I am feeling good this morning. I still have to remind myself to drink because I have no thrust and my taste is still extremely limited, but I can so do this! I now know I can survive the next three treatments over the next ten weeks. I am so much more encouraged now and am so grateful about finally Turning a Corner!
Wednesday, May 8, 2013
So THIS is Chemo......
5/8/13--Wednesday--Day 207--A Little Better, A Whole Lot Worse
Well I made it through Tuesday at work without making a complete fool of myself. Though I am still foggy and dazed, at least I can focus, concentrate and produce, so that's good. I am still scared of this feeling though. It's funny because sometimes it intensifies in waves. I had to make a trip to the high school yesterday to check on a project. Carol was going to drive and as we were walking to her car, that fogginess intensified. I just kept thinking to myself, "Wow, I can't imagine coming to work impaired like this on purpose." I am thankful I can still focus and work through it so it's more of an annoyance than an impediment. I want to keep working. That's important, especially this time of year.
As for eating, that's still a trip. I tried scrambled eggs with cheese and toast yesterday morning--nothing. No hunger, no taste, no reason to eat. I just stayed at work and worked through lunch; no reason to have Greg come get me to eat when there is absolutely no desire. It's like my whole body is numb--my taste buds, my tongue, my stomach, my mind, my skin. It's just weird. I'm trying to be "responsible" and make myself eat because my mind, while having no hunger, knows you're "supposed" to eat to stay healthy. I certainly would love to just fast for the next three months and lose all the extra weight while the desire is gone, but that's obviously not such a good idea.
Last night, Preston came home for a week between finals and moving into full-time hours at work so we went to Casa Manana, one of my favorite Mexican places, for dinner. Surely that would wet my appetite. I'm sure the food was probably great, but I couldn't taste Mexican either. Funny, we went through a bottle and a half of hot sauce without my mouth burning even a little, lol. Of course the next problem is when your tummy and appetite are numb, you don't know when to STOP eating either. You don't feel hungry, but you don't feel full--you just don't feel. So imagine me sitting there--"hmmmm, wonder if I should stop eating now? I'm not hungry; I'm not full; have I even eaten anything?" It's pretty crazy.
So besides the fogginess, besides the numbness, and besides the food issue, last night we got the first swelling too. That was fun. My ankles were/are huge! Thank goodness I had taken off my rings, at least on my right hand, because my right hand and arm are huge. That's even scarier because is it the chemo meds, is it the steroids, which I assume since my ankles are huge too, or is it lymphedema finally developing since my right arm is bigger than my left? I look like the Pillsbury Dough Girl exploding with puffiness and swelling, I swear. I wasn't sure I was even going to fit into my clothes this morning.
So that's the latest. Figured I would finish and publish my update here during lunch since I certainly wasn't going out for lunch. Thank you so much to those of you continuing to follow my journey. That is so important right now. I'm scared and afraid and feel crazy out of control but I really appreciate those of you continuing to send words of encouragement. You have been a great support system hanging in there with me. This phase continues to be rough and I have leaned on all the wonderful words you have sent. Thank you. I told someone earlier today, "Oh, so THIS is chemo!" I don't know what the last 12 weeks have been, but so far, this has second phase has been a whole lot worse. Sorry if I've been too negative. Sometimes it helps to vent. I'll get it together soon :)
Well I made it through Tuesday at work without making a complete fool of myself. Though I am still foggy and dazed, at least I can focus, concentrate and produce, so that's good. I am still scared of this feeling though. It's funny because sometimes it intensifies in waves. I had to make a trip to the high school yesterday to check on a project. Carol was going to drive and as we were walking to her car, that fogginess intensified. I just kept thinking to myself, "Wow, I can't imagine coming to work impaired like this on purpose." I am thankful I can still focus and work through it so it's more of an annoyance than an impediment. I want to keep working. That's important, especially this time of year.
As for eating, that's still a trip. I tried scrambled eggs with cheese and toast yesterday morning--nothing. No hunger, no taste, no reason to eat. I just stayed at work and worked through lunch; no reason to have Greg come get me to eat when there is absolutely no desire. It's like my whole body is numb--my taste buds, my tongue, my stomach, my mind, my skin. It's just weird. I'm trying to be "responsible" and make myself eat because my mind, while having no hunger, knows you're "supposed" to eat to stay healthy. I certainly would love to just fast for the next three months and lose all the extra weight while the desire is gone, but that's obviously not such a good idea.
Last night, Preston came home for a week between finals and moving into full-time hours at work so we went to Casa Manana, one of my favorite Mexican places, for dinner. Surely that would wet my appetite. I'm sure the food was probably great, but I couldn't taste Mexican either. Funny, we went through a bottle and a half of hot sauce without my mouth burning even a little, lol. Of course the next problem is when your tummy and appetite are numb, you don't know when to STOP eating either. You don't feel hungry, but you don't feel full--you just don't feel. So imagine me sitting there--"hmmmm, wonder if I should stop eating now? I'm not hungry; I'm not full; have I even eaten anything?" It's pretty crazy.
So besides the fogginess, besides the numbness, and besides the food issue, last night we got the first swelling too. That was fun. My ankles were/are huge! Thank goodness I had taken off my rings, at least on my right hand, because my right hand and arm are huge. That's even scarier because is it the chemo meds, is it the steroids, which I assume since my ankles are huge too, or is it lymphedema finally developing since my right arm is bigger than my left? I look like the Pillsbury Dough Girl exploding with puffiness and swelling, I swear. I wasn't sure I was even going to fit into my clothes this morning.
So that's the latest. Figured I would finish and publish my update here during lunch since I certainly wasn't going out for lunch. Thank you so much to those of you continuing to follow my journey. That is so important right now. I'm scared and afraid and feel crazy out of control but I really appreciate those of you continuing to send words of encouragement. You have been a great support system hanging in there with me. This phase continues to be rough and I have leaned on all the wonderful words you have sent. Thank you. I told someone earlier today, "Oh, so THIS is chemo!" I don't know what the last 12 weeks have been, but so far, this has second phase has been a whole lot worse. Sorry if I've been too negative. Sometimes it helps to vent. I'll get it together soon :)
Monday, May 6, 2013
Completely Different Than Expected..........
5/6/13--Day 205--Monday--Panic Mode
I probably shouldn't even be posting tonight, but I decided to record the scary feelings from today. I thought I was somewhat prepared for the new drugs in my system and what side effects to expect. I did my research, wrote about them in my blog to help me remember, and went to bed yesterday feeling like I could keep a handle on things over the next few days. But this morning I woke up with a completely unexpected, strange feeling. I felt as though I had taken too many cold medications. My head was groggy and a bit confused, but not too bad. I ate a bowl of cereal which I didn't want and had no taste, but thought it best to start the day with something in my stomach. I grabbed my nausea pills, which I never needed, and headed to work.
As soon as I started to drive I knew my head wasn't right. I was dizzy, my vision even seemed blurred, and my head felt even more foggy and not clear. I was picking up Greg from the tire shop as he dropped off the truck to have the tires rotated. When he got in the car, I told him I didn't really feel safe driving and thought he should drop me off at work, which he did.
As I walked in to the office, I felt like I was walking in a dream. I stumbled a bit at the door and decided I probably shouldn't walk much for a bit until I could get my head cleared and focus. Maybe working on the computer and concentrating would help. I was able to carry on clear and concise conversations. I worked with my team as we planned the next two-day project. I made phone calls, answered emails, and completed my planned list of items to do. But everything continued to seem somewhat surreal. By lunch, I wasn't the slightest bit hungry, but decided to have Greg bring me something to eat just in case it would help clear up my head. It tasted awful and didn't help my head. Afterwards, I had another meeting, which seemed easy to navigate through, but still, I just wasn't right.
By 3 o'clock, I started to deteriorate even more. I was now completely frustrated. I can't work like this! This is not what I was expecting. How do you unclear a foggy head? How am I going to navigate this? I hadn't read anything anywhere about this being a side effect. Where was the nausea, the fatigue, even the red flashes I had been experiencing? This was just completely unexpected.
Shortly after 4 I asked Carol to drive me home. Maybe I just needed to get in bed and sleep it off. That's what you do when you take too much cold medication, right? Maybe that would help with this too. I went straight up to bed, and while I did rest, I couldn't go to sleep. My mind kept going and when it was calm, it was still just laying there with me--wide awake. One hour passed when I looked at the clock. "Okay, Susan, just lay here some more. At least you are resting." Two hours passed--panic had started to set in and I felt like I had to get up, but didn't know what to do if I did. I asked Greg to come up and be with me for awhile. What were we going to do? How was I going to handle this. He stayed with me for a bit before I got anxious and really needed to get up. Maybe I needed to be active. Maybe we should go on a walk. I went downstairs--it was too dark to go for a walk. I figured I needed to try and move a bit and maybe that would flush my head out some. I at least needed to try to focus on something other than laying there trying not to focus. I decided to sweep and mop the kitchen, which desperately needed to be done. The more I worked, the more scared I got. "Just keep going," I thought to myself. "Get this done and you'll feel better." I started to cry as I worked. Nothing was working. Nothing.
I finished the kitchen floor, dusted the living room, cleaned the toilets. Greg jumped in and helped by vacuuming, trying hard to help me stay calm. I snapped at him, which wasn't right. I felt badly. He's been so good. What was wrong with me? I just kept crying. I wasn't obsessed, but was trying to do something to make my head clear up. What were my choices? I couldn't sit and think about it anymore. What I did keep thinking about was how am I going to function? How am I going to work if this doesn't pass quickly?
By the end of tonight, I feel better having cleaned some of the house, but as I head upstairs, I'm scared about what tomorrow will bring. This is the end of the school year--one of our busiest times. We are one person down at work already. We have so much to do. I have to be able to work. I don't need to have these emotional cycles or mental interference. I can handle physical challenges and side effects, but please Lord, get this stuff out of my head. I don't want to be working in a daze or functioning in panic mode!
I probably shouldn't even be posting tonight, but I decided to record the scary feelings from today. I thought I was somewhat prepared for the new drugs in my system and what side effects to expect. I did my research, wrote about them in my blog to help me remember, and went to bed yesterday feeling like I could keep a handle on things over the next few days. But this morning I woke up with a completely unexpected, strange feeling. I felt as though I had taken too many cold medications. My head was groggy and a bit confused, but not too bad. I ate a bowl of cereal which I didn't want and had no taste, but thought it best to start the day with something in my stomach. I grabbed my nausea pills, which I never needed, and headed to work.
As soon as I started to drive I knew my head wasn't right. I was dizzy, my vision even seemed blurred, and my head felt even more foggy and not clear. I was picking up Greg from the tire shop as he dropped off the truck to have the tires rotated. When he got in the car, I told him I didn't really feel safe driving and thought he should drop me off at work, which he did.
As I walked in to the office, I felt like I was walking in a dream. I stumbled a bit at the door and decided I probably shouldn't walk much for a bit until I could get my head cleared and focus. Maybe working on the computer and concentrating would help. I was able to carry on clear and concise conversations. I worked with my team as we planned the next two-day project. I made phone calls, answered emails, and completed my planned list of items to do. But everything continued to seem somewhat surreal. By lunch, I wasn't the slightest bit hungry, but decided to have Greg bring me something to eat just in case it would help clear up my head. It tasted awful and didn't help my head. Afterwards, I had another meeting, which seemed easy to navigate through, but still, I just wasn't right.
By 3 o'clock, I started to deteriorate even more. I was now completely frustrated. I can't work like this! This is not what I was expecting. How do you unclear a foggy head? How am I going to navigate this? I hadn't read anything anywhere about this being a side effect. Where was the nausea, the fatigue, even the red flashes I had been experiencing? This was just completely unexpected.
Shortly after 4 I asked Carol to drive me home. Maybe I just needed to get in bed and sleep it off. That's what you do when you take too much cold medication, right? Maybe that would help with this too. I went straight up to bed, and while I did rest, I couldn't go to sleep. My mind kept going and when it was calm, it was still just laying there with me--wide awake. One hour passed when I looked at the clock. "Okay, Susan, just lay here some more. At least you are resting." Two hours passed--panic had started to set in and I felt like I had to get up, but didn't know what to do if I did. I asked Greg to come up and be with me for awhile. What were we going to do? How was I going to handle this. He stayed with me for a bit before I got anxious and really needed to get up. Maybe I needed to be active. Maybe we should go on a walk. I went downstairs--it was too dark to go for a walk. I figured I needed to try and move a bit and maybe that would flush my head out some. I at least needed to try to focus on something other than laying there trying not to focus. I decided to sweep and mop the kitchen, which desperately needed to be done. The more I worked, the more scared I got. "Just keep going," I thought to myself. "Get this done and you'll feel better." I started to cry as I worked. Nothing was working. Nothing.
I finished the kitchen floor, dusted the living room, cleaned the toilets. Greg jumped in and helped by vacuuming, trying hard to help me stay calm. I snapped at him, which wasn't right. I felt badly. He's been so good. What was wrong with me? I just kept crying. I wasn't obsessed, but was trying to do something to make my head clear up. What were my choices? I couldn't sit and think about it anymore. What I did keep thinking about was how am I going to function? How am I going to work if this doesn't pass quickly?
By the end of tonight, I feel better having cleaned some of the house, but as I head upstairs, I'm scared about what tomorrow will bring. This is the end of the school year--one of our busiest times. We are one person down at work already. We have so much to do. I have to be able to work. I don't need to have these emotional cycles or mental interference. I can handle physical challenges and side effects, but please Lord, get this stuff out of my head. I don't want to be working in a daze or functioning in panic mode!
Sunday, May 5, 2013
Chemotherapy Phase II Begins--The Next Twelve Weeks...........
5/5/2013--Sunday--Day 204--A Whole New World
Last week, I received a phone call from Renee Davis, a co-worker, asking if I would speak at Safford's Relay for Life event scheduled for May 3rd. She wanted me to introduce myself, what type of cancer I have, share what type of support system I have, and what motivates me to get through this. The speech would be the day after my first chemo of phase II of this journey. Though I was worried about the effects the new drugs might have on me, I didn't hesitate to accept the invitation--something inside just told me to do it. She also asked me to attend the Survivors' dinner that Friday, the week before the event, which I agreed to do as well.
Friday, April 26th was the Survivors' Dinner, which was the same day I wrote about in my last blog when I had trouble making it through the work day. Despite having a rough day, Greg and I attended the dinner. Our children, Preston and Brooklyn, have both participated in past Relay for Life events, but Greg and I have never been a part of it, so we had no idea what to expect. Walking into the Survivors' Dinner was a new experience that brought many different feelings. The first thing I noticed was the same thing that bothers me when I go into the MD Anderson Cancer Center--I'm pretty much the youngest one there. Most of the other people my age at the center, as well as that night at the dinner, are caregivers attending with their parents who are being treated or, at the dinner, were the survivors. The second thing I noticed was I was the only person without hair. I guess the others have made it through their journey already and are truly survivors, whereas it felt like I was the only one there still in the middle of my fight.
As we sat through the dinner, I realized there was a whole other world of people in Safford that existed that I didn't really know, yet I was suddenly part of this world due to this horrible disease. We all shared that struggle in common, which now made us a group, whether we knew each other or not. One of my former students, Lisa, ran the dinner, and other former students and colleagues were also volunteers all there to honor and serve the survivors. We received purple T-shirts to wear to the relay as well as luminaria bags to decorate for the race. I began to hit my wall of exhaustion so Greg took me home shortly after the meal. I didn't know exactly what I was going to say at the relay, but I had a week to think about what information I could share that would truly make a difference for people to hear.
Prior to leaving for Mesa for my first chemo of part II, Monday through Wednesday were high stress days for me. I was working on finalizing a very important grant for school which we had been preparing for months. My feet had become worse than they had been in many weeks, and both Monday and Tuesday I had worked late finalizing the grant. By Wednesday, the grant deadline, it was in its final stage and all I needed to do was upload some changes and submit it. When technical glitches arose with the online application, I became more overwhelmed than usual. While I called the grant support help-line and I knew the issues would be resolved, I found myself stressing much more than I usually would be. I hated that. It's not like me. It was another reminder of the additional stress cancer can have on your life, even in a place where you are usually calm and collected. But it all worked out and the grant was submitted by 2PM, hours before it was due and by 4 we were heading to Mesa to spend the night before our early 7:30AM appointments started the next day.
Once we arrived in town, we spent the evening visiting with our friends, Paul and Diane, delivering a bon voyage gift for their travels to Ireland, a trip we strongly considered going on with them before my diagnosis last fall. They were great company and provided a good way to relax away the stress of the week before facing the next day. We returned to Preston's early to get a good night's sleep.
Chemo 1 Part II: The morning started with early labs. A new girl, Traci, accessed my port on the first shot since Heather wasn't there, so that was a relief. From there we went to the 2nd floor to meet with Dr. C. She explained the new drug regiment along with some side effects to watch for and the risks that come with the new drugs. We were done with Taxol, thank goodness, so hopefully the numbness in my feet with subside soon. But more importantly, hopefully the side effects of these new drugs won't be worse than numb feet. It was scary hearing about everything, but here were the basics on risks: 1) There is a 1% chance these drugs can affect my heart, which is why they did the EKG prior to starting any chemo. 2) These drugs can cause liver damage, so it is important to drink A LOT of water to keep the liver flushed. 3) These drugs have a 1% chance of causing leukemia. At that point I asked Dr. C. what other options we had and were there choices of drugs with treating breast cancer. She explained, besides the Taxol, two of the three new drugs were the most common and standard drug regiments given with breast cancer patients by most all breast oncologists. The third drug was a standard for MD Anderson as their research showed the three together, along with the regiment of Taxol I had already received, had the most positive results in fighting cancer. That is when you have to have faith in your doctor and believe she is doing the very best treatment for your case.
She then explained the side effects of the new three drugs. There can be nausea for the first 3-5 days, but they will give me medicines to control that. Starting on day 7, I will be most susceptible to infections because my blood counts are most likely to drop during the second week. Use precautions by staying away from sick people and crowds, be careful about eating fresh fruits or vegetables at a restaurant because they may not have been cleaned thoroughly, and watch that my temperature never hits 100.5, or higher as that may indicate I have infections and my body may need IV antibiotics to fight it since my blood count may be too low. The final week is supposed to be my blood counts recovering and rebuilding so I can start the regiment again. She also gave me a prescription to have my blood count taken here in Safford before making the trip to Mesa for the next dose. If my blood counts drop low, they call that becoming neutropenic, which means you have to take even more precautions to not be exposed to germs and they may have to do infusions before I can start the next round or treatment. Following Dr. C, Mike, the pharmacist came in, just like he had done when we first start the Taxol, but this time he had an apprentice who was practicing telling me all of the side effects of each drug. I stumped him with a few questions, which Mike immediately jumped in to clarify. Basically they covered what Dr. C had already said, but with a little more detail.
Before I get started on the infusion series, let me take a minute to explain how chemotherapy works. Chemotherapy drugs basically damage cells by keeping them from dividing, thereby stopping cancerous cells from growing. If cells can't divide, they die. Normal cells control how quickly they divide and stop dividing when they run into other like cells; cancerous cells have lost the ability to stop themselves from continuing to divide, so they divide rapidly and out of control, not stopping, therefore creating clusters of cancerous cells or tumors. Chemotherapy drugs damage RNA and DNA that tell cells how to copy themselves. Side effects are caused because chemotherapy drugs kill rapidly dividing cells, both good and bad. The good ones will grow back, but the hope is the chemotherapy drugs kill all the bad cells by preventing them from dividing and they can't grow back. Normal cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowels, and the hair follicles. Losing the good cells in these areas can result in low blood counts, mouth sores, nausea, diarrhea, hair loss and other common side effects.
So, from our appointment with Dr. C, we headed to the 3rd floor for infusion. Cheryl was my nurse, and together we decided to try to run the meds as prescribed and watch for reaction. There were so many now, and they weren't known to be as harsh going in as the Taxol. First, there were now three pre-meds before the chemo. We started with Dexamethasone, the steroid drip they started me on when I first started the Taxol. This helps stop allergic reactions and helps with the nausea. That was a 15 minute drip. At the same time, I received Zofran for nausea, also a 15 minute drip. Both were accompanied by Emend, a 20 minute drip also used for nausea. My IV pole and tubes coming down now looked like a juggled mess. All three pre-meds ran at the same time, but once they were finished, there was a 30 minute wait before starting the three chemo drugs, which have to be run separately. The pre-meds went like clockwork with no problems whatsoever. After our 30 minute wait period, we started the first new chemo drug called 5-FU, or Fluorouracil. The most common (occurring in more than 30% of patients) side effects of 5-FU include diarrhea (I have lots of experience with that from the Taxol), nausea, mouth sores, poor appetite and taste changes--metallic taste, watery eyes, sensitivity to light, and low blood counts. The 5-FU finished in 15 minutes and we were on to drug number 2, Adriamycin, or Doxorubicin. Adriamycin is a red drug (some call it the Red Devil) that must stayed covered to avoid light so they bring it out covered in a green plastic bag which hangs over the IV drip bag as it goes in. It only takes 15 minutes to run as well, but there are some additional dangers and side effects with this drug. First, you are limited on the amount of Adriamycin you can receive in a lifetime. Second, this is the drug that can damage your heart, though it is rare. This is also the drug than raises your risk of developing leukemia, even years later. The other different thing about this drug is there are early side effects, peeing red, which I did, as well as the others mentioned above, and later side effects, that happen within two weeks, which are the lower blood counts. The infusion went without incident and we were on to the third and final drug, Cytoxan, or Cyclophosphamide, which required a full one hour to infuse. Cytoxan's major side effects are what have already been mentioned, but mostly low blood counts with your white and red blood cells and platelets decreasing. This drug also carries a slight risk of developing leukemia.
So that was it. Between the pre-meds and the chemotherapy meds, I had an IV pole full of infusion tubes running all over the place. Though we ran everything at normal speeds, just all of the changing and hooking up takes additional time. By the time everything took place, we were still behind schedule and I missed my 1:30 appointment with Dr. Matt and was late to my 3 o'clock sleeve-fitting appointment. It had definitely been a long day, but I was feeling pretty good, better than when I receive the Taxol.
We quickly drove to our next appointment to be fitted for a sleeve and glove for my right arm, which had started to experience some slight swelling. I'm so scared of developing lymphedema that I want to make sure I have a sleeve. The technician fitting me explained that I should be wearing the sleeve when traveling, especially anytime my ears are going to pop, which they always do in the Superior Mountains between Mesa and Safford. She put the sleeve and glove on and I wanted to cry. I suddenly looked like a burn victim. Here was another sign I was never really going to be my normal self again. It was tough handling it so I was glad it didn't take long. Preston had met up with us and he and Greg assured me it was hardly noticeable, which was nice, but still hard to take. By the time we made a quick stop at Costco, I was done. I still felt okay, but knew we needed to head home. By Globe, I was peeing red already and by the time we were home, I was feeling a little woozy. It was going to be an whole new experience on these drugs.
Starting Friday morning, for the first time ever, I had to take Dexamethasone twice a day for the first three days following infusion. Mike, the pharmacist, said it would continue to help with reactions, but would also give me energy and may keep me awake. I worked Friday as normal and headed out to Relay for Life with Greg about 5 PM.
RELAY FOR LIFE: Once again, we weren't sure what to expect when we first arrived. There were tents set up on the inside and outside of a make-shift track at the fairgrounds. I saw Lisa, my former student, who seemed to be in charge of the survivors. She signed me in, gave me my packet and then Greg and I wandered around looking while waiting for the official beginning and the Survivors' Lap to start the race. We had met up with Cindy Stahl, a friend and cancer survivor, as well as Carolyn Hopkins, also a survivor, so luckily I didn't feel quite as alone. I was still the only bald one out there. All of these other people were truly survivors and not in the middle of their fight like I was. As the Survivor's Lap began, I was shocked to find myself fighting tears within the first quarter of the track. What the heck! Why was I crying? It was actually way more emotional than I ever would have expected. All of these people were clapping to honor us as we circled the track and all I could do was think about how much I didn't want to be there. I didn't want to be a survivor, I didn't want to have cancer, and walking that first lap brought all of the realization of my world right into my face. I know that sounds crazy, but you sometimes just get so involved in doing all the treatments, doing all the things you're supposed to be doing, that you don't face the idea that YOU HAVE CANCER until you come face-to-face with the fact in a moment like that. After the first lap, care-givers joined the survivors so Greg and I walked hand-in-hand around the track one more time as I fought tears again.
Following the laps, we hung around walking some for the next hour and a half before heading home for a little while to rest before I gave my speech at the lighting of the luminarias. I needed to take my steroid before it got too late and I was tired and wanted to put my feet up. They were still very numb and Mike said they might remain numb from the Taxol for several more weeks. By 9 we headed back out. As we were waiting by the stage for the speeches to start, I became aware that during the speeches and the lighting of the luminarias, everyone stopped walking and came to the stage to listen. That was suddenly scary. There were three of us who were going to talk and I was going first, followed by another survivor then a care-giver of a survivor. As I went on stage, I said a quick prayer for help in being inspirational, and then I started and delivered the following message. Greg taped in and uploaded it to Facebook if you want to see it live (though I messed up a bit and ad-libbed a lot).
RELAY FOR LIFE SPEECH:
Hi, my name is Susan Lindsey and I’m in the middle of being treated for Stage 3 Breast Cancer. My diagnosis was in November when they thought I had what they called DCIS--”It’s a simple pre-cancer breast cancer,” they told me. “Easy to treat and nothing to worry about.”
At the end of November during my lumpectomy, instead of DCIS, they found a 4 CM invasive tumor. That was followed by discovering I also had tumors in my sentinel and axillary lymph nodes, one in my mammary lymph node and most surprisingly a 12 CM tumor in my abdomen which would also require a full hysterectomy
So, 3 surgeries in 5 weeks later, my life had changed a lot. It pretty much felt like an asteroid fell from the sky and hit me on the head. Where did my life go?
Tonight I’ve been asked to share with you what my support system has been and what you can do to help support cancer patients.
My first advice to friends and family of cancer patients is to have the courage to ask, even if you don’t know if they know that you know. Awkwardness is so hard and if you don’t ask, they’ll never really know that you care.
When I was first diagnosed, my husband, Greg and I, discussed how we were going to do this, what kind of support systems did we have and what were we going to need. I work for a school system, and the most important thing for me was I didn’t want awkwardness. I didn’t want to run into people who didn’t know if I knew they knew, so they were afraid to say anything to me. So avoid the awkwardness and ask how we are doing and let us know you care.
My second piece of advice--encourage cancer patients to find an easy way to communicate updates to everyone at once whether it is through email or blog or social media. If you're a family member, volunteer to help distribute the information. We as cancer patients have so much more to focus on.
I decided to start a public blog about my cancer. That has been the biggest help of all. I put all of my update information on the blog and then I ask my supporters to read it to find out the details so I don’t have to tell the details over and over again. That would be so depressing. Instead, after they read the details, I canI talk to people more about the support and love.
My third piece of advice, learn as much as you can about the disease. I am an educator and a constant teacher. I’ve heard from the readers of my blog that they have learned so much about cancer that they never knew. They have had parents, siblings, friends who have suffered and even died from the disease, but they never had the understanding of the personal details of the disease or the emotions a cancer patient faces. You know we face chemo, but what is it and how does it work? What effects does it have on the body? As an educator, I’m really glad I have found a way to use my cancer to teach. People should know--the good, the bad and the ugly.
My last piece of advice is remember the backside of the marathon. When we are first diagnosed, when we are at the starting line of this race, everyone is there showing support and seeing what they can do. When we first start chemo, when we have surgeries, during all the important milestones, supporters are usually right there. But remember us during those long periods of treatment week after week. This is what I call the back side of the marathon where we feel like we are running alone. We know we have supporters, waiting at the finish line, but the back side of the race is the hardest part to stay positive. Check in on us during the backside of the marathon. Remind us you’re still thinking about us. This is a long journey.
I will end by sharing with you what motivates me to keep fighting, besides all my wonderful supporters. When I was first diagnosed, I adopted a phrase to help me get through this. “Don’t Waste Your Cancer.” At first, that can almost sound offensive, but for me, it was motivational. I didn’t have a choice whether I wanted to take this journey, but I do have a choice as to what I want to do with it. I don’t know why I got cancer, and it doesn’t really matter. It is what it is. What I try to focus on is what positive things I can now do with it since it is part of my life. I don’t have all those answers because I’m still in the middle of my fight and treatment. But I keep telling myself over and over--”Don’t Waste Your Cancer!” Make something good out of it. And that has kept me positive and motivated to keep going.
Thank you for being here tonight and for caring. Cancer is the hardest thing I’ve ever faced in my life, but knowing other people care, people you don’t even know personally--well, that really helps. Thank you.
So that was it. It was done. Despite the mess ups, hopefully I shared an inspiring message that will help others. I was glad I did it, but I was also ready to go home. After the other two finished their speeches, we exited the stage, stayed to watch a slide show, then we went home.
New Side Effects of the New Drugs: Friday had been a busy day, but Saturday I was curious about how the weekend was going to go. The first two things I noticed was feeling a bit dazed or confused, enough so that I didn't feel comfortable enough to drive. The second thing was I realized the chills I had been feeling since January must have been from the Taxol, but I was cold no more. In fact, the third thing I experienced was the strangest thing so far (other than peeing red of course). I get what I would call red flashes, not be be confused with hot flashes. Suddenly my neck and then my face turn bright red and I feel a burning from the inside out. I don't really break into a sweat, though there is a small glistening on my bald head, but it truly feels like I am on fire inside burning through my skin to the outside. It is short lived, but you can actually see the bright red of my neck and face. This ought to be fun at work. Goodness gracious--I'll scare people to death!
Saturday I had small spurts of energy as we did a few project around the house, our biggest accomplishment being a huge grocery shopping trip, something we desperately needed to do. We also did some yard work and actually swam for the first time this season. That was actually my first time submerging into a body of water since before my surgeries in January. The water temperature was 84 degrees and felt nice. I knew my chilly period was over when I could get in and out of the pool without freezing, but swimming with numb feet was quite a trip. Sunday was pretty much the same but I took my steroid later as we both slept in. I found quite a bit more energy, but I was very nauseated. All I could get down was some toast. I cleaned and reorganized some kitchen drawers and finally took a nausea pill. By early evening I was able to eat some soup but quickly noticed it had not taste. We finished the evening laying under the stars looking for satellites.
Tomorrow will be my first day without the steroids so we'll see how the work day goes. Starting on Thursday, my blood counts are supposed to be more affected as well. From here on out, these next three weeks we will be learning yet another Whole New World!
Last week, I received a phone call from Renee Davis, a co-worker, asking if I would speak at Safford's Relay for Life event scheduled for May 3rd. She wanted me to introduce myself, what type of cancer I have, share what type of support system I have, and what motivates me to get through this. The speech would be the day after my first chemo of phase II of this journey. Though I was worried about the effects the new drugs might have on me, I didn't hesitate to accept the invitation--something inside just told me to do it. She also asked me to attend the Survivors' dinner that Friday, the week before the event, which I agreed to do as well.
Friday, April 26th was the Survivors' Dinner, which was the same day I wrote about in my last blog when I had trouble making it through the work day. Despite having a rough day, Greg and I attended the dinner. Our children, Preston and Brooklyn, have both participated in past Relay for Life events, but Greg and I have never been a part of it, so we had no idea what to expect. Walking into the Survivors' Dinner was a new experience that brought many different feelings. The first thing I noticed was the same thing that bothers me when I go into the MD Anderson Cancer Center--I'm pretty much the youngest one there. Most of the other people my age at the center, as well as that night at the dinner, are caregivers attending with their parents who are being treated or, at the dinner, were the survivors. The second thing I noticed was I was the only person without hair. I guess the others have made it through their journey already and are truly survivors, whereas it felt like I was the only one there still in the middle of my fight.
As we sat through the dinner, I realized there was a whole other world of people in Safford that existed that I didn't really know, yet I was suddenly part of this world due to this horrible disease. We all shared that struggle in common, which now made us a group, whether we knew each other or not. One of my former students, Lisa, ran the dinner, and other former students and colleagues were also volunteers all there to honor and serve the survivors. We received purple T-shirts to wear to the relay as well as luminaria bags to decorate for the race. I began to hit my wall of exhaustion so Greg took me home shortly after the meal. I didn't know exactly what I was going to say at the relay, but I had a week to think about what information I could share that would truly make a difference for people to hear.
Prior to leaving for Mesa for my first chemo of part II, Monday through Wednesday were high stress days for me. I was working on finalizing a very important grant for school which we had been preparing for months. My feet had become worse than they had been in many weeks, and both Monday and Tuesday I had worked late finalizing the grant. By Wednesday, the grant deadline, it was in its final stage and all I needed to do was upload some changes and submit it. When technical glitches arose with the online application, I became more overwhelmed than usual. While I called the grant support help-line and I knew the issues would be resolved, I found myself stressing much more than I usually would be. I hated that. It's not like me. It was another reminder of the additional stress cancer can have on your life, even in a place where you are usually calm and collected. But it all worked out and the grant was submitted by 2PM, hours before it was due and by 4 we were heading to Mesa to spend the night before our early 7:30AM appointments started the next day.
Once we arrived in town, we spent the evening visiting with our friends, Paul and Diane, delivering a bon voyage gift for their travels to Ireland, a trip we strongly considered going on with them before my diagnosis last fall. They were great company and provided a good way to relax away the stress of the week before facing the next day. We returned to Preston's early to get a good night's sleep.
Chemo 1 Part II: The morning started with early labs. A new girl, Traci, accessed my port on the first shot since Heather wasn't there, so that was a relief. From there we went to the 2nd floor to meet with Dr. C. She explained the new drug regiment along with some side effects to watch for and the risks that come with the new drugs. We were done with Taxol, thank goodness, so hopefully the numbness in my feet with subside soon. But more importantly, hopefully the side effects of these new drugs won't be worse than numb feet. It was scary hearing about everything, but here were the basics on risks: 1) There is a 1% chance these drugs can affect my heart, which is why they did the EKG prior to starting any chemo. 2) These drugs can cause liver damage, so it is important to drink A LOT of water to keep the liver flushed. 3) These drugs have a 1% chance of causing leukemia. At that point I asked Dr. C. what other options we had and were there choices of drugs with treating breast cancer. She explained, besides the Taxol, two of the three new drugs were the most common and standard drug regiments given with breast cancer patients by most all breast oncologists. The third drug was a standard for MD Anderson as their research showed the three together, along with the regiment of Taxol I had already received, had the most positive results in fighting cancer. That is when you have to have faith in your doctor and believe she is doing the very best treatment for your case.
She then explained the side effects of the new three drugs. There can be nausea for the first 3-5 days, but they will give me medicines to control that. Starting on day 7, I will be most susceptible to infections because my blood counts are most likely to drop during the second week. Use precautions by staying away from sick people and crowds, be careful about eating fresh fruits or vegetables at a restaurant because they may not have been cleaned thoroughly, and watch that my temperature never hits 100.5, or higher as that may indicate I have infections and my body may need IV antibiotics to fight it since my blood count may be too low. The final week is supposed to be my blood counts recovering and rebuilding so I can start the regiment again. She also gave me a prescription to have my blood count taken here in Safford before making the trip to Mesa for the next dose. If my blood counts drop low, they call that becoming neutropenic, which means you have to take even more precautions to not be exposed to germs and they may have to do infusions before I can start the next round or treatment. Following Dr. C, Mike, the pharmacist came in, just like he had done when we first start the Taxol, but this time he had an apprentice who was practicing telling me all of the side effects of each drug. I stumped him with a few questions, which Mike immediately jumped in to clarify. Basically they covered what Dr. C had already said, but with a little more detail.
Before I get started on the infusion series, let me take a minute to explain how chemotherapy works. Chemotherapy drugs basically damage cells by keeping them from dividing, thereby stopping cancerous cells from growing. If cells can't divide, they die. Normal cells control how quickly they divide and stop dividing when they run into other like cells; cancerous cells have lost the ability to stop themselves from continuing to divide, so they divide rapidly and out of control, not stopping, therefore creating clusters of cancerous cells or tumors. Chemotherapy drugs damage RNA and DNA that tell cells how to copy themselves. Side effects are caused because chemotherapy drugs kill rapidly dividing cells, both good and bad. The good ones will grow back, but the hope is the chemotherapy drugs kill all the bad cells by preventing them from dividing and they can't grow back. Normal cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowels, and the hair follicles. Losing the good cells in these areas can result in low blood counts, mouth sores, nausea, diarrhea, hair loss and other common side effects.
So, from our appointment with Dr. C, we headed to the 3rd floor for infusion. Cheryl was my nurse, and together we decided to try to run the meds as prescribed and watch for reaction. There were so many now, and they weren't known to be as harsh going in as the Taxol. First, there were now three pre-meds before the chemo. We started with Dexamethasone, the steroid drip they started me on when I first started the Taxol. This helps stop allergic reactions and helps with the nausea. That was a 15 minute drip. At the same time, I received Zofran for nausea, also a 15 minute drip. Both were accompanied by Emend, a 20 minute drip also used for nausea. My IV pole and tubes coming down now looked like a juggled mess. All three pre-meds ran at the same time, but once they were finished, there was a 30 minute wait before starting the three chemo drugs, which have to be run separately. The pre-meds went like clockwork with no problems whatsoever. After our 30 minute wait period, we started the first new chemo drug called 5-FU, or Fluorouracil. The most common (occurring in more than 30% of patients) side effects of 5-FU include diarrhea (I have lots of experience with that from the Taxol), nausea, mouth sores, poor appetite and taste changes--metallic taste, watery eyes, sensitivity to light, and low blood counts. The 5-FU finished in 15 minutes and we were on to drug number 2, Adriamycin, or Doxorubicin. Adriamycin is a red drug (some call it the Red Devil) that must stayed covered to avoid light so they bring it out covered in a green plastic bag which hangs over the IV drip bag as it goes in. It only takes 15 minutes to run as well, but there are some additional dangers and side effects with this drug. First, you are limited on the amount of Adriamycin you can receive in a lifetime. Second, this is the drug that can damage your heart, though it is rare. This is also the drug than raises your risk of developing leukemia, even years later. The other different thing about this drug is there are early side effects, peeing red, which I did, as well as the others mentioned above, and later side effects, that happen within two weeks, which are the lower blood counts. The infusion went without incident and we were on to the third and final drug, Cytoxan, or Cyclophosphamide, which required a full one hour to infuse. Cytoxan's major side effects are what have already been mentioned, but mostly low blood counts with your white and red blood cells and platelets decreasing. This drug also carries a slight risk of developing leukemia.
So that was it. Between the pre-meds and the chemotherapy meds, I had an IV pole full of infusion tubes running all over the place. Though we ran everything at normal speeds, just all of the changing and hooking up takes additional time. By the time everything took place, we were still behind schedule and I missed my 1:30 appointment with Dr. Matt and was late to my 3 o'clock sleeve-fitting appointment. It had definitely been a long day, but I was feeling pretty good, better than when I receive the Taxol.
We quickly drove to our next appointment to be fitted for a sleeve and glove for my right arm, which had started to experience some slight swelling. I'm so scared of developing lymphedema that I want to make sure I have a sleeve. The technician fitting me explained that I should be wearing the sleeve when traveling, especially anytime my ears are going to pop, which they always do in the Superior Mountains between Mesa and Safford. She put the sleeve and glove on and I wanted to cry. I suddenly looked like a burn victim. Here was another sign I was never really going to be my normal self again. It was tough handling it so I was glad it didn't take long. Preston had met up with us and he and Greg assured me it was hardly noticeable, which was nice, but still hard to take. By the time we made a quick stop at Costco, I was done. I still felt okay, but knew we needed to head home. By Globe, I was peeing red already and by the time we were home, I was feeling a little woozy. It was going to be an whole new experience on these drugs.
Starting Friday morning, for the first time ever, I had to take Dexamethasone twice a day for the first three days following infusion. Mike, the pharmacist, said it would continue to help with reactions, but would also give me energy and may keep me awake. I worked Friday as normal and headed out to Relay for Life with Greg about 5 PM.
RELAY FOR LIFE: Once again, we weren't sure what to expect when we first arrived. There were tents set up on the inside and outside of a make-shift track at the fairgrounds. I saw Lisa, my former student, who seemed to be in charge of the survivors. She signed me in, gave me my packet and then Greg and I wandered around looking while waiting for the official beginning and the Survivors' Lap to start the race. We had met up with Cindy Stahl, a friend and cancer survivor, as well as Carolyn Hopkins, also a survivor, so luckily I didn't feel quite as alone. I was still the only bald one out there. All of these other people were truly survivors and not in the middle of their fight like I was. As the Survivor's Lap began, I was shocked to find myself fighting tears within the first quarter of the track. What the heck! Why was I crying? It was actually way more emotional than I ever would have expected. All of these people were clapping to honor us as we circled the track and all I could do was think about how much I didn't want to be there. I didn't want to be a survivor, I didn't want to have cancer, and walking that first lap brought all of the realization of my world right into my face. I know that sounds crazy, but you sometimes just get so involved in doing all the treatments, doing all the things you're supposed to be doing, that you don't face the idea that YOU HAVE CANCER until you come face-to-face with the fact in a moment like that. After the first lap, care-givers joined the survivors so Greg and I walked hand-in-hand around the track one more time as I fought tears again.
Following the laps, we hung around walking some for the next hour and a half before heading home for a little while to rest before I gave my speech at the lighting of the luminarias. I needed to take my steroid before it got too late and I was tired and wanted to put my feet up. They were still very numb and Mike said they might remain numb from the Taxol for several more weeks. By 9 we headed back out. As we were waiting by the stage for the speeches to start, I became aware that during the speeches and the lighting of the luminarias, everyone stopped walking and came to the stage to listen. That was suddenly scary. There were three of us who were going to talk and I was going first, followed by another survivor then a care-giver of a survivor. As I went on stage, I said a quick prayer for help in being inspirational, and then I started and delivered the following message. Greg taped in and uploaded it to Facebook if you want to see it live (though I messed up a bit and ad-libbed a lot).
RELAY FOR LIFE SPEECH:
Hi, my name is Susan Lindsey and I’m in the middle of being treated for Stage 3 Breast Cancer. My diagnosis was in November when they thought I had what they called DCIS--”It’s a simple pre-cancer breast cancer,” they told me. “Easy to treat and nothing to worry about.”
At the end of November during my lumpectomy, instead of DCIS, they found a 4 CM invasive tumor. That was followed by discovering I also had tumors in my sentinel and axillary lymph nodes, one in my mammary lymph node and most surprisingly a 12 CM tumor in my abdomen which would also require a full hysterectomy
So, 3 surgeries in 5 weeks later, my life had changed a lot. It pretty much felt like an asteroid fell from the sky and hit me on the head. Where did my life go?
Tonight I’ve been asked to share with you what my support system has been and what you can do to help support cancer patients.
My first advice to friends and family of cancer patients is to have the courage to ask, even if you don’t know if they know that you know. Awkwardness is so hard and if you don’t ask, they’ll never really know that you care.
When I was first diagnosed, my husband, Greg and I, discussed how we were going to do this, what kind of support systems did we have and what were we going to need. I work for a school system, and the most important thing for me was I didn’t want awkwardness. I didn’t want to run into people who didn’t know if I knew they knew, so they were afraid to say anything to me. So avoid the awkwardness and ask how we are doing and let us know you care.
My second piece of advice--encourage cancer patients to find an easy way to communicate updates to everyone at once whether it is through email or blog or social media. If you're a family member, volunteer to help distribute the information. We as cancer patients have so much more to focus on.
I decided to start a public blog about my cancer. That has been the biggest help of all. I put all of my update information on the blog and then I ask my supporters to read it to find out the details so I don’t have to tell the details over and over again. That would be so depressing. Instead, after they read the details, I canI talk to people more about the support and love.
My third piece of advice, learn as much as you can about the disease. I am an educator and a constant teacher. I’ve heard from the readers of my blog that they have learned so much about cancer that they never knew. They have had parents, siblings, friends who have suffered and even died from the disease, but they never had the understanding of the personal details of the disease or the emotions a cancer patient faces. You know we face chemo, but what is it and how does it work? What effects does it have on the body? As an educator, I’m really glad I have found a way to use my cancer to teach. People should know--the good, the bad and the ugly.
My last piece of advice is remember the backside of the marathon. When we are first diagnosed, when we are at the starting line of this race, everyone is there showing support and seeing what they can do. When we first start chemo, when we have surgeries, during all the important milestones, supporters are usually right there. But remember us during those long periods of treatment week after week. This is what I call the back side of the marathon where we feel like we are running alone. We know we have supporters, waiting at the finish line, but the back side of the race is the hardest part to stay positive. Check in on us during the backside of the marathon. Remind us you’re still thinking about us. This is a long journey.
I will end by sharing with you what motivates me to keep fighting, besides all my wonderful supporters. When I was first diagnosed, I adopted a phrase to help me get through this. “Don’t Waste Your Cancer.” At first, that can almost sound offensive, but for me, it was motivational. I didn’t have a choice whether I wanted to take this journey, but I do have a choice as to what I want to do with it. I don’t know why I got cancer, and it doesn’t really matter. It is what it is. What I try to focus on is what positive things I can now do with it since it is part of my life. I don’t have all those answers because I’m still in the middle of my fight and treatment. But I keep telling myself over and over--”Don’t Waste Your Cancer!” Make something good out of it. And that has kept me positive and motivated to keep going.
Thank you for being here tonight and for caring. Cancer is the hardest thing I’ve ever faced in my life, but knowing other people care, people you don’t even know personally--well, that really helps. Thank you.
So that was it. It was done. Despite the mess ups, hopefully I shared an inspiring message that will help others. I was glad I did it, but I was also ready to go home. After the other two finished their speeches, we exited the stage, stayed to watch a slide show, then we went home.
New Side Effects of the New Drugs: Friday had been a busy day, but Saturday I was curious about how the weekend was going to go. The first two things I noticed was feeling a bit dazed or confused, enough so that I didn't feel comfortable enough to drive. The second thing was I realized the chills I had been feeling since January must have been from the Taxol, but I was cold no more. In fact, the third thing I experienced was the strangest thing so far (other than peeing red of course). I get what I would call red flashes, not be be confused with hot flashes. Suddenly my neck and then my face turn bright red and I feel a burning from the inside out. I don't really break into a sweat, though there is a small glistening on my bald head, but it truly feels like I am on fire inside burning through my skin to the outside. It is short lived, but you can actually see the bright red of my neck and face. This ought to be fun at work. Goodness gracious--I'll scare people to death!
Saturday I had small spurts of energy as we did a few project around the house, our biggest accomplishment being a huge grocery shopping trip, something we desperately needed to do. We also did some yard work and actually swam for the first time this season. That was actually my first time submerging into a body of water since before my surgeries in January. The water temperature was 84 degrees and felt nice. I knew my chilly period was over when I could get in and out of the pool without freezing, but swimming with numb feet was quite a trip. Sunday was pretty much the same but I took my steroid later as we both slept in. I found quite a bit more energy, but I was very nauseated. All I could get down was some toast. I cleaned and reorganized some kitchen drawers and finally took a nausea pill. By early evening I was able to eat some soup but quickly noticed it had not taste. We finished the evening laying under the stars looking for satellites.
Tomorrow will be my first day without the steroids so we'll see how the work day goes. Starting on Thursday, my blood counts are supposed to be more affected as well. From here on out, these next three weeks we will be learning yet another Whole New World!
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