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!
Tuesday, April 30, 2013
Chemo Marathon 1 Ends as Chemo Marathon 2 Begins...............
4/29/13--Monday--Day 198--Halfway Through Chemo
As I ended my last post, I was hoping to postpone chemo #10 as the numbness in my feet had become quite severe and my fatigue had built to a point where I finally had to leave work early for the first time ever. I called the doctor's clinic Wednesday but Dr. C was out for the week, being replaced by Dr. B (kind of funny) or Dr. Bahadur. I explained that Dr. C said to stop for a week if the numbness was becoming too intense. The nurse returned my call saying Dr. B wanted to proceed with chemo, or at least labs as well as have me see Michelle, Dr. C's assistant, so we headed for Mesa the next morning, April 11th. Michelle's recommendation to continue the chemo, despite the severe numbness, seemed a contradiction to what I heard Dr. C say when we postponed chemo #6, but at that point, I was frustrated and not going to argue. I figured I had three more Taxol treatments to go so I would just get through them hoping for the best.
Each time I have chemo, I now have a certain nurse, Heather, access my port. I'm beginning to feel quite special between Heather and Cheryl. Heather works in the lab every other Thursday, and on the opposite Thursdays works on the infusion floor. For weeks it was taking two, three and even four attempts by different nurses to access my port. Thank goodness for the numbing cream I put on in Globe, an hour before labs. Heather would usually be called to assist and would be successful accessing my port the first time every time. She finally said to only have her access it, whether she was in the lab or on the chemo floor because it wasn't fair I was having to get stuck multiple times each time. She has been super wonderful, and up to now, hasn't missed yet.
After she accessed my port for chemo #9, the blood flow seemed slow and a bit sticky so they packed the port with a syringe full of Hepburn and let it sit while my labs processed. By the time I was ready for chemo, it was flowing normal again. As we started with chemo #10, the port was having the same issues, so after a flush of Hepburn, Cheryl decided to do what they kindly refer to as a "Rotor Rooter" before I left after chemo #10. That is a special medication they inject into the port to eat away the gunk that may be built up in the port. I figured with my protein S deficiency, maybe my blood is thicker than normal and has more tendency to build up in the port. Whatever it was, since I was "Rotor Rootered" I have had no problems with my port flowing well.
Cheryl ran chemo #10 super slow again and I had no reaction, thank goodness. It makes for a long day, but not reacting makes it time well spent. Following chemo I stayed the night at my Aunt Mary's with my sister, Sharon, and her husband, Harry, who were still here from Michigan. Greg went home as he was way behind on some of his website work. It has been tough for him and I both to keep up with our workload when we are only working four, and sometimes three-day work-weeks.
Friday morning Sharon, Harry and I headed to Cottonwood. My dad had decided that since my sister was here, it might be a good time to go through my mom's closets and drawers as we have not touched anything of hers since she died last July. I agreed but I knew I was only going to have so much energy so I would do what I could. What I didn't expect is the onset of diarrhea. I had had some weeks earlier, but it passed quickly as I hoped this would too. It was very draining on a body that didn't have much reserve energy to begin with. By the time we finished for the day Friday, I was beat, but we had made it through mom's closet and bedroom drawers. Saturday we started on the extra bedroom closet and drawers but after the first section, I was down for the count. When I hit that wall of exhaustion, I don't even feel like I have the energy to move my body. I laid on the bed and watched as Sharon went through the rest of the clothes. It seemed trips to the bathroom was all I could muster so most of the day Saturday was spent resting in between small spurts of energy where I would help with a few things then sit or lay down awhile.
A lot of people who love and care deeply about me have been critical about me trying to do too much. That weekend was a perfect example of why they don't need to worry, because when my body needs to stop, it stops and down I go for a bit. It isn't really a decision of mine to push on or not because my body just stops. It's the first time in my life where I've experience fatigue winning over willpower, no matter what. I do know I can't stop my life, or trying to live it, for cancer. I would rather face fatigue than stop living and give in to cancer completely dominating my life. Maybe that's part of why continuing to work has played such an important part of my mental attitude. I have learned to be cautious, approaching activities now with the realization that I may not complete them, and that's okay, but it's also okay to try them.
Sunday I felt better. Sharon and Harry drove me to Apache Lake, conveniently located half way between Cottonwood and Safford. Greg met us there with the boat figuring we might as well try a day-trip at the lake since we had to drive past it anyway. Sharon went on the boat with us as I drove and stay under the canopy the whole day. I was pleased that while the diarrhea was looming in the background, it stayed at bay while we were on the boat. Despite the warm temperature, I was still cold. Interestingly, I have stayed cold all the time ever since my surgery in January. Of course having numb feet only adds to the feeling of being cold, but even in the hot sun, I was cold. I stayed covered under the boat canopy with my floppy sun hat keeping my head warm, towels wrapped around my legs keeping them warm, and a cover-up over my body keeping it warm. Needless to say, it was easy to practice sun avoidance as Dr. C has instructed being all covered up to keep warm. Greg water skied, air chaired, and wake surfed as Sharon flagged and I drove. We ate lunch at the far west end by the dam and it wasn't until the trip back that I became nauseous, a feeling, I didn't know at the time, would stay with me for the next few weeks. I decided eating on the boat and then traveling back on rough water was something I would avoid in the future. I was glad I wasn't having to drive home as I took my first nausea pill in weeks.
The following days the fatigue continued though I managed to work each day. Thursday, chemo #11 went well with no reaction, though I was still fighting nausea, exhausting fatigue and diarrhea. I am convinced my body just reach a toxic level of the Taxol or something because it was the worse I've been through this whole chemo journey. Following chemo #11, our friend, Suzie, from Albuquerque, was celebrating her 50th birthday with a party and she and Mike desperately wanted us to attend. We hadn't been to Albuquerque since the Balloon Fiesta in early October, so it was important to try and go. We came home and slept after chemo #11 and headed out for the 6 hour trip to New Mexico Friday morning. At the party Friday night, I visited with many of my ballooning friends, but after socializing about an hour, I was exhausted. I went to our room to feed Sierra, our dog, and instantly fell asleep on the bed while she was eating. I don't know how long I slept before Greg came looking for me, but after that I was finished for the night.
Hitting that wall of fatigue has resulted in familiar symptoms now. First, according to Greg, I get exceptionally white and sometimes start trembling. I become very cold and shiver, even when covered in blankets. Then come the tears. For some reason, I start crying, even when I don't feel like crying. It usually passes quickly and it seems there is nothing I can do to avoid the steps.
I was glad I had began carrying nausea pills in my purse as it seemed to be a new addition to my life. While I was told I could take Imodium AD for the diarrhea, I chose not to in fear of then becoming constipated. The diarrhea had become mostly manageable so I just tried to increase my water intake to avoid becoming dehydrated.
Saturday morning after sleeping in, we went out to breakfast then to a matinee and that was it for my day. I was having trouble walking, was cold, and spent the rest of the day resting on the couch. By Sunday, however, I felt better, other than some nausea on the trip home.
The Monday through Wednesday following our trip to Albuquerque, after two weeks of feeling yucky, I finally felt better. I had a little more energy and life seemed more manageable though I still collapsed in the recliner every day after work. Thank goodness I have a job where I sit at a computer all day. I can't imagine working a physical job going through this, though I know many people do.
Last Thursday, April 25th finally came and with it came chemo #12, my final dose of Taxol. This marked the half way point of chemo treatments and the end of Taxol, which hopefully will mean the end of numb feet. Chemo #12 once again came with no reaction, but I had a tough day Friday following this dose. It was only the second time at work where I hit the wall and actually cried, something I have try desperately not to do at work. To make it worse, I was in the middle of a meeting with people from another department discussing an important change. We were on the phone with a vendor on speaker phone at Carol's desk where I had walked over to ask some questions. While standing, I became weak, shaky, and felt like I was going to pass out. I quickly took a chair from a co-worker so I could sit and listen and he relocated to my desk. I kept my back to the rest of the people in the office while looking at the phone and the computer screen at Carol's desk. That helped me hide the tears that suddenly came. Carol was so good. She inconspicuously handed me some tissue as I breathed through the episode drinking some water as it passed. Thankfully no one else in the room saw my face or knew what had happened or that I had cried.
This Thursday I start the next phase of chemo, which includes three drugs, but only once every three weeks for the next twelve weeks. At least we will save some trips to Mesa. The chemo drugs include Adriamycin, Cytoxan, and FU5. I have been told that while this combination of drugs won't cause numbness like the Taxol did, it will leave me more fatigued, make me more nauseous, and will have a much bigger affect on my blood numbers making me more susceptible to infection and becoming neutropenic. So far I have heard the second of the three weeks will be when I am most susceptible. Thursday will be an early and busy day so we will go over Wednesday evening. I have a 7:30 lab appt, 8:30 Dr. C appt to learn about this next phase, 9:30 new chemo drugs infusion appt, 2:00 Dr. Matt (Schlumbreck) follow-up appt. and a 3:00 fitting for a compression sleeve for my arm to help reduce the chances of lymphedema when I travel or do increased activity.
As I prepare for this next phase, I am excited to be halfway through the chemo regiment, but I am not looking forward to this being the harder half. I sometimes question how I will ever get back in shape after this whole treatment regiment is over. I feel useless, lazy, and disappointed in myselfe many times as I just don't have much endurance at all. Even this past weekend at home, I could help Greg some with a fence project we are doing, but then I would have to sit and rest.
But, we have made it through our first marathon and are starting our second of three total, radiation being the third. From what I've been told, this next race will be the worst of the three marathons we have to run, but I have already shown I can do 12 weeks, so I know I'll make it through this next 12 weeks. For now I am going to try to focus on the fact that we are halfway through the chemo!
As I ended my last post, I was hoping to postpone chemo #10 as the numbness in my feet had become quite severe and my fatigue had built to a point where I finally had to leave work early for the first time ever. I called the doctor's clinic Wednesday but Dr. C was out for the week, being replaced by Dr. B (kind of funny) or Dr. Bahadur. I explained that Dr. C said to stop for a week if the numbness was becoming too intense. The nurse returned my call saying Dr. B wanted to proceed with chemo, or at least labs as well as have me see Michelle, Dr. C's assistant, so we headed for Mesa the next morning, April 11th. Michelle's recommendation to continue the chemo, despite the severe numbness, seemed a contradiction to what I heard Dr. C say when we postponed chemo #6, but at that point, I was frustrated and not going to argue. I figured I had three more Taxol treatments to go so I would just get through them hoping for the best.
Each time I have chemo, I now have a certain nurse, Heather, access my port. I'm beginning to feel quite special between Heather and Cheryl. Heather works in the lab every other Thursday, and on the opposite Thursdays works on the infusion floor. For weeks it was taking two, three and even four attempts by different nurses to access my port. Thank goodness for the numbing cream I put on in Globe, an hour before labs. Heather would usually be called to assist and would be successful accessing my port the first time every time. She finally said to only have her access it, whether she was in the lab or on the chemo floor because it wasn't fair I was having to get stuck multiple times each time. She has been super wonderful, and up to now, hasn't missed yet.
After she accessed my port for chemo #9, the blood flow seemed slow and a bit sticky so they packed the port with a syringe full of Hepburn and let it sit while my labs processed. By the time I was ready for chemo, it was flowing normal again. As we started with chemo #10, the port was having the same issues, so after a flush of Hepburn, Cheryl decided to do what they kindly refer to as a "Rotor Rooter" before I left after chemo #10. That is a special medication they inject into the port to eat away the gunk that may be built up in the port. I figured with my protein S deficiency, maybe my blood is thicker than normal and has more tendency to build up in the port. Whatever it was, since I was "Rotor Rootered" I have had no problems with my port flowing well.
Cheryl ran chemo #10 super slow again and I had no reaction, thank goodness. It makes for a long day, but not reacting makes it time well spent. Following chemo I stayed the night at my Aunt Mary's with my sister, Sharon, and her husband, Harry, who were still here from Michigan. Greg went home as he was way behind on some of his website work. It has been tough for him and I both to keep up with our workload when we are only working four, and sometimes three-day work-weeks.
Friday morning Sharon, Harry and I headed to Cottonwood. My dad had decided that since my sister was here, it might be a good time to go through my mom's closets and drawers as we have not touched anything of hers since she died last July. I agreed but I knew I was only going to have so much energy so I would do what I could. What I didn't expect is the onset of diarrhea. I had had some weeks earlier, but it passed quickly as I hoped this would too. It was very draining on a body that didn't have much reserve energy to begin with. By the time we finished for the day Friday, I was beat, but we had made it through mom's closet and bedroom drawers. Saturday we started on the extra bedroom closet and drawers but after the first section, I was down for the count. When I hit that wall of exhaustion, I don't even feel like I have the energy to move my body. I laid on the bed and watched as Sharon went through the rest of the clothes. It seemed trips to the bathroom was all I could muster so most of the day Saturday was spent resting in between small spurts of energy where I would help with a few things then sit or lay down awhile.
A lot of people who love and care deeply about me have been critical about me trying to do too much. That weekend was a perfect example of why they don't need to worry, because when my body needs to stop, it stops and down I go for a bit. It isn't really a decision of mine to push on or not because my body just stops. It's the first time in my life where I've experience fatigue winning over willpower, no matter what. I do know I can't stop my life, or trying to live it, for cancer. I would rather face fatigue than stop living and give in to cancer completely dominating my life. Maybe that's part of why continuing to work has played such an important part of my mental attitude. I have learned to be cautious, approaching activities now with the realization that I may not complete them, and that's okay, but it's also okay to try them.
Sunday I felt better. Sharon and Harry drove me to Apache Lake, conveniently located half way between Cottonwood and Safford. Greg met us there with the boat figuring we might as well try a day-trip at the lake since we had to drive past it anyway. Sharon went on the boat with us as I drove and stay under the canopy the whole day. I was pleased that while the diarrhea was looming in the background, it stayed at bay while we were on the boat. Despite the warm temperature, I was still cold. Interestingly, I have stayed cold all the time ever since my surgery in January. Of course having numb feet only adds to the feeling of being cold, but even in the hot sun, I was cold. I stayed covered under the boat canopy with my floppy sun hat keeping my head warm, towels wrapped around my legs keeping them warm, and a cover-up over my body keeping it warm. Needless to say, it was easy to practice sun avoidance as Dr. C has instructed being all covered up to keep warm. Greg water skied, air chaired, and wake surfed as Sharon flagged and I drove. We ate lunch at the far west end by the dam and it wasn't until the trip back that I became nauseous, a feeling, I didn't know at the time, would stay with me for the next few weeks. I decided eating on the boat and then traveling back on rough water was something I would avoid in the future. I was glad I wasn't having to drive home as I took my first nausea pill in weeks.
The following days the fatigue continued though I managed to work each day. Thursday, chemo #11 went well with no reaction, though I was still fighting nausea, exhausting fatigue and diarrhea. I am convinced my body just reach a toxic level of the Taxol or something because it was the worse I've been through this whole chemo journey. Following chemo #11, our friend, Suzie, from Albuquerque, was celebrating her 50th birthday with a party and she and Mike desperately wanted us to attend. We hadn't been to Albuquerque since the Balloon Fiesta in early October, so it was important to try and go. We came home and slept after chemo #11 and headed out for the 6 hour trip to New Mexico Friday morning. At the party Friday night, I visited with many of my ballooning friends, but after socializing about an hour, I was exhausted. I went to our room to feed Sierra, our dog, and instantly fell asleep on the bed while she was eating. I don't know how long I slept before Greg came looking for me, but after that I was finished for the night.
Hitting that wall of fatigue has resulted in familiar symptoms now. First, according to Greg, I get exceptionally white and sometimes start trembling. I become very cold and shiver, even when covered in blankets. Then come the tears. For some reason, I start crying, even when I don't feel like crying. It usually passes quickly and it seems there is nothing I can do to avoid the steps.
I was glad I had began carrying nausea pills in my purse as it seemed to be a new addition to my life. While I was told I could take Imodium AD for the diarrhea, I chose not to in fear of then becoming constipated. The diarrhea had become mostly manageable so I just tried to increase my water intake to avoid becoming dehydrated.
Saturday morning after sleeping in, we went out to breakfast then to a matinee and that was it for my day. I was having trouble walking, was cold, and spent the rest of the day resting on the couch. By Sunday, however, I felt better, other than some nausea on the trip home.
The Monday through Wednesday following our trip to Albuquerque, after two weeks of feeling yucky, I finally felt better. I had a little more energy and life seemed more manageable though I still collapsed in the recliner every day after work. Thank goodness I have a job where I sit at a computer all day. I can't imagine working a physical job going through this, though I know many people do.
Last Thursday, April 25th finally came and with it came chemo #12, my final dose of Taxol. This marked the half way point of chemo treatments and the end of Taxol, which hopefully will mean the end of numb feet. Chemo #12 once again came with no reaction, but I had a tough day Friday following this dose. It was only the second time at work where I hit the wall and actually cried, something I have try desperately not to do at work. To make it worse, I was in the middle of a meeting with people from another department discussing an important change. We were on the phone with a vendor on speaker phone at Carol's desk where I had walked over to ask some questions. While standing, I became weak, shaky, and felt like I was going to pass out. I quickly took a chair from a co-worker so I could sit and listen and he relocated to my desk. I kept my back to the rest of the people in the office while looking at the phone and the computer screen at Carol's desk. That helped me hide the tears that suddenly came. Carol was so good. She inconspicuously handed me some tissue as I breathed through the episode drinking some water as it passed. Thankfully no one else in the room saw my face or knew what had happened or that I had cried.
This Thursday I start the next phase of chemo, which includes three drugs, but only once every three weeks for the next twelve weeks. At least we will save some trips to Mesa. The chemo drugs include Adriamycin, Cytoxan, and FU5. I have been told that while this combination of drugs won't cause numbness like the Taxol did, it will leave me more fatigued, make me more nauseous, and will have a much bigger affect on my blood numbers making me more susceptible to infection and becoming neutropenic. So far I have heard the second of the three weeks will be when I am most susceptible. Thursday will be an early and busy day so we will go over Wednesday evening. I have a 7:30 lab appt, 8:30 Dr. C appt to learn about this next phase, 9:30 new chemo drugs infusion appt, 2:00 Dr. Matt (Schlumbreck) follow-up appt. and a 3:00 fitting for a compression sleeve for my arm to help reduce the chances of lymphedema when I travel or do increased activity.
As I prepare for this next phase, I am excited to be halfway through the chemo regiment, but I am not looking forward to this being the harder half. I sometimes question how I will ever get back in shape after this whole treatment regiment is over. I feel useless, lazy, and disappointed in myselfe many times as I just don't have much endurance at all. Even this past weekend at home, I could help Greg some with a fence project we are doing, but then I would have to sit and rest.
But, we have made it through our first marathon and are starting our second of three total, radiation being the third. From what I've been told, this next race will be the worst of the three marathons we have to run, but I have already shown I can do 12 weeks, so I know I'll make it through this next 12 weeks. For now I am going to try to focus on the fact that we are halfway through the chemo!
Wednesday, April 10, 2013
So Much Has Happened........
4/9/13--Tuesday--Day 178--Two Guardian Angels Looking Out For Me!
Thank you, my friends, for hanging in there with me. I know I haven't posted in almost a month. So much has happened, not just with my cancer, but with other parts of my life. I've had three chemo treatments since my last post--chemo #7, #8 and #9. My feet have become numb to the point of possibly postponing my next treatment. My body also seems to be having harsher reactions to the Taxol as it builds up in my system. My exhaustion level is so much greater now as well. In addition, for the last three weeks, the health of my 99 year old grandmother, with whom I was very close, declined and she finally passed away the evening of April 6th, exactly two months prior to her 100th birthday.
First, let me backtrack to my chemo treatments. My dad joined us for the day for chemo #7. Before we started infusion, I had an appointment with Dr. Cianfrocca. I was glad my dad had the opportunity to meet her. He had met Dr. Matt and Dr. Byrum in the hospital during my surgeries but this was his first time meeting Dr. C, who has also treated his and my mom's best friend, Wanda, who lives down the street from them in Cottonwood.
For chemo #7 on 3/21/13, Cheryl was gone so I had a different nurse. She changed a few routines and I had a reaction during treatment. We had to laugh because this was the second time my dad had come to chemo and both times I had reactions. On that day, the nurse decided to push the Pepcid instead of dripping it. That means she injected it in the IV line instead of dripping it through an IV bag over a 15 minute period. Injecting it quickly caused dizziness and a headache. Once the Taxol started, about 30 minutes into the treatment, I had another reaction. She stopped it for a little bit until it passed and then started it at a slower rate. I seemed to be fine until she tried to bump it back up faster and the reaction returned, so we slowed it down once again.
Someone asked me what it means when I say I have a reaction and what does a chemo reaction feel like? There are two ways to describe it. First, think of a time when you were super scared and experienced an adrenaline rush. Your senses become overactive and you feel tingly all through your body. Imagine having that feeling for 20+ minutes. I think that's why I have to sleep after a reaction. My body is just exhausted. I would also describe it as what it must feel like to have ice cold water shot through your veins. You feel a cold, tingly sensation that starts at one end of your body and runs all the way through. Reactions sometimes come with extreme dizziness and a headache as well. Once the reaction subsides, my body feels exhausted and I just need to close my eyes. Usually by the time I leave chemo I am okay, but my body is tired.
The Saturday following chemo #7, my 99 year old grandmother was put in a Hospice home for the second time in a month. She had been healthy and mostly independent until recently. She was diagnosed with cancer in her stomach just a few months before my diagnosis. She underwent 25 sessions of radiation like a champ. They called her the iron lady and she left no room for any whining from me when I go through it. While the radiation shrunk the tumor in her tummy, it had grown back and was causing problems again. So on Sunday, we made another trip to Phoenix to visit her. She was already recovering and feeling better and we spent most of the day outside on the porch at the Hospice house visiting. By Sunday afternoon however, my feet were becoming more numb and I had lost much of my energy by the time we headed for home. I had trouble even walking to the car and slept most of the way home.
For chemo #8 on 3/28/13, my sister, Sharon, and her husband, Harry, from Michigan had come come to town due to my grandmother's declining health so they joined us at chemo. My feet had recovered some from the weekend, but were still getting a little more intense on the numbness. Cheryl was back. She also injected the Pepcid instead of dripping it because the symptoms I described from the last chemo were not known side effects of Pepcid. She injected the Pepcid slowly, over a 3 minute period, but once again, shortly after my head started spinning. She did some more in-depth research and sure enough, less than one percent of patients experience dizziness as a side effect of Pepcid. Just after she read that, I explained my headache, which had lodged between my right eyelid and the bridge of my nose. Sure enough, once again, less than one percent of patients have sudden and severe headaches shortly after receiving Pepcid. We waited the 30 minutes required after the Pepcid before starting the Taxol. She ran the Taxol at 150, the slower rate we had been using all this time, but my body reacted once again. She stopped it and within 20 minutes, the reaction subsided. When she restarted it, she ran it at an even slower rate, 125, and I was able to finish with no reactions.
I didn't recover well from chemo #8. Greg took me home Thursday night after seeing my grandma who had been released from her second Hospice house because she was doing so much better. On the way home, I just didn't feel well. All day Friday I could barely muster up enough energy to cook, eat, and clean up before returning back to the recliner. I had lots of plans to do many little projects around the house, but my body wasn't cooperating. Brooklyn was on spring break in Dallas with her aunt. I did manage to work to rearrange her flight so she could fly to Phoenix on Sunday instead of back to Idaho so she could see her great-grandmother for Easter. Saturday morning I had a little more energy, but not much. Most of the morning I stayed down, not having the energy to do much. By early afternoon, I felt a little better. I wanted to make iced sugar cookies to take to my dad, my grandma, and my aunt for Easter Sunday the next morning. That was a lot of work, but it was so very important to me. Easter was my mom's favorite holiday and she was the queen of iced sugar cookies. I wanted to make them to honor her and because they are also my dad and grandma's favorite cookie. Thank goodness I seemed to have more energy Saturday afternoon than I had had since before chemo. With the help of God, I made cookies in honor of my mother and our first Easter without her, and for my grandmother, who absolutely loves them.
We headed to Mesa Easter morning. Greg and I spent a wonderful Easter with my grandma, my dad, my Aunt Mary, my sister Sharon and brother-in-law Harry, Preston, and Brooklyn. Earlier in the day, my two cousins were there, Aunt Mary's sons Jeff and Sean. Later in the day my wonderful niece, Jennifer, and her two boys joined us as well. Strength-wise, it was a really hard day for me. Me feet had become progressively worse and my energy level was shot. It is SO very hard to want to do what you usually do to jump in and help, but not have the physical strength or endurance to really even move much. I enjoyed most of the day from the couch with my feet up and my head back, but I was happy to be there. My grandmother said it was the best day ever, and she smiled and laughed and enjoyed every moment. My daughter, who thought it would be the worst Easter ever because she would be away from us, had one of the her best Easters because she got to be home with family.
Chemo #9 came the Thursday following Easter. This time my daughter Brooklyn, who was home for the week from college in Idaho, joined me. It was nice to have her there. She has been away at school for all of the cancer stuff and has felt badly not being here to support me. During chemo, Cheryl was my nurse again and we decided to step back and completely do everything as slow as possible. We dripped the Pepcid over 15 minutes and I had no reactions. That was nice. We slowed the Taxol to 125, and while that extended the chemo time from 1 hour to 2.5 hours, I had no reactions! Yay! So that was the secret. We were simply going to have to go super slow with everything to avoid reactions at this point.
My sister was going to join me for chemo again, but my grandmother had had a bad night so she was staying to help my aunt. We went to my Aunt Mary's house after chemo, like always, but this time my grandmother looked like a completely different person. I was truly shocked. I stayed with her, held her hand and talked to her until the transport came to move her back to a Hospice house for the third and what I knew was the final time. Once she was settled in her new room, I spent the evening by her side along with Greg, Brooklyn, Aunt Mary, Dad, and Sharon and Harry. The shock of how quickly she had declined was confirmed when there was a shift change. The night staff came in and introduced themselves. Aunt Mary recognized Alec and said, "Hi Alec. Alec is one of the nurses who cared for grandma before." Three weeks prior Alec loved visiting with my grandma when she was first put in this Hospice facility. Alec didn't recognize grandma as she starred at the woman in the bed. Aunt Mary stood up and walked to the bed, and suddenly Alec gasped, put her hand over her heart, and said, "Emma! It's my sweet Emma!" when she finally realized the lady in the bed she was staring at was grandma, this vibrant lovable, amazing woman she had cared for three weeks ago. Goosebumps came over my body as I watched her sudden reaction and shock. That's just how much grandma had changed physically in just a few short days.
The next morning, my exhaustion level was incredibly high again, but I spend the morning in a chair with my feet up by my grandmother's side as she was finally resting peacefully. Unfortunately, by early afternoon, I hit that exhaustion wall again and I could stay no longer. I was so incredibly lucky though. My grandmother woke up for the first time all day. She instantly knew who I was calling me by name and we talked, smiled, hugged and truly said our heart-felt good-byes. I knew it was going to be the last time I saw her. I had a strong feeling she would pass the next day, Saturday. She told me, "You're going to make it through this Susan, I know you will" meaning the cancer and I confirmed with her that I would. She then said she loved me with all of her heart and I told her the same. Being her wonderfully polite self, she thanked me for the sugar cookies and smiled and told me how much she loved them. I was fighting the tears as I held her and looked into her eyes seeing her kind soul. Between the exhaustion and my emotions, the tears finally started flowing down my check as she and I said good-bye to each other for the final time. I moved to the chair out of her sight as I could no longer keep myself from crying. Brooklyn and Greg spent time telling her goodbye as well. Walking out of that room was one of the hardest things, but my body had truly had it and I knew I had to go home and rest. Saturday and Sunday we had an event in Tucson that we could not cancel and as much as I wanted to be with grandma, I also knew it was time for her to have her children at her side and Aunt Mary and my dad would be there where she needed them. Saturday night at 11:45 she took her last breath with Aunt Mary at her side, like always, as she went to heaven to join her husband, her son, Dick, my mom, my sister, Sandra, my cousin, Cheryl, all of her siblings and so many more who have passed before her. I love her so much and will miss her dearly. She and my mom were the two most important women in my life, and I lost both of them within 8 months at a time in my life when I needed them both so much.
I went back to Mesa Sunday evening and spend the evening and the next morning with my Aunt Mary, my dad, and my sister and brother-in-law. I needed to be by family and wish I had not had to leave Friday. But like the last 15 years, my Aunt Mary stood strong by my grandmother's side as she left this world. Aunt Mary is a saint. She has been by her dad's side as he died, and now by her mom's. She was with her brother and my mom as they died, and was with her partner, Bill as he died. She had dedicated the last 15 years of her life to taking care of her mother. My dad has been there to help relieve her, especially this past year, and they both have so much to be proud of in being there for their mother every single time she needed anything.
I returned to work today. I am strongly considering postponing chemo #10 scheduled for Thursday because my feet have become much worse. I will make the final decision tomorrow. My co-worker, Carol, asked if it could be related to the amount of stress I'm under. I hadn't thought about that until she said it, but it is possible. When I had to postpone chemo #6, it was the week my grandmother went in to the first Hospice house and the week we had to accept that the end was more near than we had hoped. Now the second time the numbness is worse is this stressful week of losing her. Hmmm, it's a thought. Who knows? The numbness this time is on the bottom of my feet rather than fully concentrated in my toes. It feels like that burning, stinging feeling you get when you slap your hand really hard on something. My left foot also feels like there is a large blister on the back part of my arch. I keep asking Greg to find it and pop it because I swear it's there, but he keeps saying there is nothing. We will see how they feel tomorrow and make the decision of whether to cancel this Thursday or not.
As this has all ended, I am going to believe the circle of bad events has come to a close. My grandmother died on April 6th, exactly two months, to the day, prior to her 100th birthday. But April 6th is also the day that one year ago, I had my foot surgery that ended up turning into RSD. So April 6th, 2012 started the chain reaction of bad events and I am going to believe that April 6th, 2013 has closed that circle. With my mom and now my grandma both up in heaven, my life surely has to be even more blessed with two Guardian Angels looking out for me.
Thank you, my friends, for hanging in there with me. I know I haven't posted in almost a month. So much has happened, not just with my cancer, but with other parts of my life. I've had three chemo treatments since my last post--chemo #7, #8 and #9. My feet have become numb to the point of possibly postponing my next treatment. My body also seems to be having harsher reactions to the Taxol as it builds up in my system. My exhaustion level is so much greater now as well. In addition, for the last three weeks, the health of my 99 year old grandmother, with whom I was very close, declined and she finally passed away the evening of April 6th, exactly two months prior to her 100th birthday.
First, let me backtrack to my chemo treatments. My dad joined us for the day for chemo #7. Before we started infusion, I had an appointment with Dr. Cianfrocca. I was glad my dad had the opportunity to meet her. He had met Dr. Matt and Dr. Byrum in the hospital during my surgeries but this was his first time meeting Dr. C, who has also treated his and my mom's best friend, Wanda, who lives down the street from them in Cottonwood.
For chemo #7 on 3/21/13, Cheryl was gone so I had a different nurse. She changed a few routines and I had a reaction during treatment. We had to laugh because this was the second time my dad had come to chemo and both times I had reactions. On that day, the nurse decided to push the Pepcid instead of dripping it. That means she injected it in the IV line instead of dripping it through an IV bag over a 15 minute period. Injecting it quickly caused dizziness and a headache. Once the Taxol started, about 30 minutes into the treatment, I had another reaction. She stopped it for a little bit until it passed and then started it at a slower rate. I seemed to be fine until she tried to bump it back up faster and the reaction returned, so we slowed it down once again.
Someone asked me what it means when I say I have a reaction and what does a chemo reaction feel like? There are two ways to describe it. First, think of a time when you were super scared and experienced an adrenaline rush. Your senses become overactive and you feel tingly all through your body. Imagine having that feeling for 20+ minutes. I think that's why I have to sleep after a reaction. My body is just exhausted. I would also describe it as what it must feel like to have ice cold water shot through your veins. You feel a cold, tingly sensation that starts at one end of your body and runs all the way through. Reactions sometimes come with extreme dizziness and a headache as well. Once the reaction subsides, my body feels exhausted and I just need to close my eyes. Usually by the time I leave chemo I am okay, but my body is tired.
The Saturday following chemo #7, my 99 year old grandmother was put in a Hospice home for the second time in a month. She had been healthy and mostly independent until recently. She was diagnosed with cancer in her stomach just a few months before my diagnosis. She underwent 25 sessions of radiation like a champ. They called her the iron lady and she left no room for any whining from me when I go through it. While the radiation shrunk the tumor in her tummy, it had grown back and was causing problems again. So on Sunday, we made another trip to Phoenix to visit her. She was already recovering and feeling better and we spent most of the day outside on the porch at the Hospice house visiting. By Sunday afternoon however, my feet were becoming more numb and I had lost much of my energy by the time we headed for home. I had trouble even walking to the car and slept most of the way home.
For chemo #8 on 3/28/13, my sister, Sharon, and her husband, Harry, from Michigan had come come to town due to my grandmother's declining health so they joined us at chemo. My feet had recovered some from the weekend, but were still getting a little more intense on the numbness. Cheryl was back. She also injected the Pepcid instead of dripping it because the symptoms I described from the last chemo were not known side effects of Pepcid. She injected the Pepcid slowly, over a 3 minute period, but once again, shortly after my head started spinning. She did some more in-depth research and sure enough, less than one percent of patients experience dizziness as a side effect of Pepcid. Just after she read that, I explained my headache, which had lodged between my right eyelid and the bridge of my nose. Sure enough, once again, less than one percent of patients have sudden and severe headaches shortly after receiving Pepcid. We waited the 30 minutes required after the Pepcid before starting the Taxol. She ran the Taxol at 150, the slower rate we had been using all this time, but my body reacted once again. She stopped it and within 20 minutes, the reaction subsided. When she restarted it, she ran it at an even slower rate, 125, and I was able to finish with no reactions.
I didn't recover well from chemo #8. Greg took me home Thursday night after seeing my grandma who had been released from her second Hospice house because she was doing so much better. On the way home, I just didn't feel well. All day Friday I could barely muster up enough energy to cook, eat, and clean up before returning back to the recliner. I had lots of plans to do many little projects around the house, but my body wasn't cooperating. Brooklyn was on spring break in Dallas with her aunt. I did manage to work to rearrange her flight so she could fly to Phoenix on Sunday instead of back to Idaho so she could see her great-grandmother for Easter. Saturday morning I had a little more energy, but not much. Most of the morning I stayed down, not having the energy to do much. By early afternoon, I felt a little better. I wanted to make iced sugar cookies to take to my dad, my grandma, and my aunt for Easter Sunday the next morning. That was a lot of work, but it was so very important to me. Easter was my mom's favorite holiday and she was the queen of iced sugar cookies. I wanted to make them to honor her and because they are also my dad and grandma's favorite cookie. Thank goodness I seemed to have more energy Saturday afternoon than I had had since before chemo. With the help of God, I made cookies in honor of my mother and our first Easter without her, and for my grandmother, who absolutely loves them.
We headed to Mesa Easter morning. Greg and I spent a wonderful Easter with my grandma, my dad, my Aunt Mary, my sister Sharon and brother-in-law Harry, Preston, and Brooklyn. Earlier in the day, my two cousins were there, Aunt Mary's sons Jeff and Sean. Later in the day my wonderful niece, Jennifer, and her two boys joined us as well. Strength-wise, it was a really hard day for me. Me feet had become progressively worse and my energy level was shot. It is SO very hard to want to do what you usually do to jump in and help, but not have the physical strength or endurance to really even move much. I enjoyed most of the day from the couch with my feet up and my head back, but I was happy to be there. My grandmother said it was the best day ever, and she smiled and laughed and enjoyed every moment. My daughter, who thought it would be the worst Easter ever because she would be away from us, had one of the her best Easters because she got to be home with family.
Chemo #9 came the Thursday following Easter. This time my daughter Brooklyn, who was home for the week from college in Idaho, joined me. It was nice to have her there. She has been away at school for all of the cancer stuff and has felt badly not being here to support me. During chemo, Cheryl was my nurse again and we decided to step back and completely do everything as slow as possible. We dripped the Pepcid over 15 minutes and I had no reactions. That was nice. We slowed the Taxol to 125, and while that extended the chemo time from 1 hour to 2.5 hours, I had no reactions! Yay! So that was the secret. We were simply going to have to go super slow with everything to avoid reactions at this point.
My sister was going to join me for chemo again, but my grandmother had had a bad night so she was staying to help my aunt. We went to my Aunt Mary's house after chemo, like always, but this time my grandmother looked like a completely different person. I was truly shocked. I stayed with her, held her hand and talked to her until the transport came to move her back to a Hospice house for the third and what I knew was the final time. Once she was settled in her new room, I spent the evening by her side along with Greg, Brooklyn, Aunt Mary, Dad, and Sharon and Harry. The shock of how quickly she had declined was confirmed when there was a shift change. The night staff came in and introduced themselves. Aunt Mary recognized Alec and said, "Hi Alec. Alec is one of the nurses who cared for grandma before." Three weeks prior Alec loved visiting with my grandma when she was first put in this Hospice facility. Alec didn't recognize grandma as she starred at the woman in the bed. Aunt Mary stood up and walked to the bed, and suddenly Alec gasped, put her hand over her heart, and said, "Emma! It's my sweet Emma!" when she finally realized the lady in the bed she was staring at was grandma, this vibrant lovable, amazing woman she had cared for three weeks ago. Goosebumps came over my body as I watched her sudden reaction and shock. That's just how much grandma had changed physically in just a few short days.
The next morning, my exhaustion level was incredibly high again, but I spend the morning in a chair with my feet up by my grandmother's side as she was finally resting peacefully. Unfortunately, by early afternoon, I hit that exhaustion wall again and I could stay no longer. I was so incredibly lucky though. My grandmother woke up for the first time all day. She instantly knew who I was calling me by name and we talked, smiled, hugged and truly said our heart-felt good-byes. I knew it was going to be the last time I saw her. I had a strong feeling she would pass the next day, Saturday. She told me, "You're going to make it through this Susan, I know you will" meaning the cancer and I confirmed with her that I would. She then said she loved me with all of her heart and I told her the same. Being her wonderfully polite self, she thanked me for the sugar cookies and smiled and told me how much she loved them. I was fighting the tears as I held her and looked into her eyes seeing her kind soul. Between the exhaustion and my emotions, the tears finally started flowing down my check as she and I said good-bye to each other for the final time. I moved to the chair out of her sight as I could no longer keep myself from crying. Brooklyn and Greg spent time telling her goodbye as well. Walking out of that room was one of the hardest things, but my body had truly had it and I knew I had to go home and rest. Saturday and Sunday we had an event in Tucson that we could not cancel and as much as I wanted to be with grandma, I also knew it was time for her to have her children at her side and Aunt Mary and my dad would be there where she needed them. Saturday night at 11:45 she took her last breath with Aunt Mary at her side, like always, as she went to heaven to join her husband, her son, Dick, my mom, my sister, Sandra, my cousin, Cheryl, all of her siblings and so many more who have passed before her. I love her so much and will miss her dearly. She and my mom were the two most important women in my life, and I lost both of them within 8 months at a time in my life when I needed them both so much.
I went back to Mesa Sunday evening and spend the evening and the next morning with my Aunt Mary, my dad, and my sister and brother-in-law. I needed to be by family and wish I had not had to leave Friday. But like the last 15 years, my Aunt Mary stood strong by my grandmother's side as she left this world. Aunt Mary is a saint. She has been by her dad's side as he died, and now by her mom's. She was with her brother and my mom as they died, and was with her partner, Bill as he died. She had dedicated the last 15 years of her life to taking care of her mother. My dad has been there to help relieve her, especially this past year, and they both have so much to be proud of in being there for their mother every single time she needed anything.
I returned to work today. I am strongly considering postponing chemo #10 scheduled for Thursday because my feet have become much worse. I will make the final decision tomorrow. My co-worker, Carol, asked if it could be related to the amount of stress I'm under. I hadn't thought about that until she said it, but it is possible. When I had to postpone chemo #6, it was the week my grandmother went in to the first Hospice house and the week we had to accept that the end was more near than we had hoped. Now the second time the numbness is worse is this stressful week of losing her. Hmmm, it's a thought. Who knows? The numbness this time is on the bottom of my feet rather than fully concentrated in my toes. It feels like that burning, stinging feeling you get when you slap your hand really hard on something. My left foot also feels like there is a large blister on the back part of my arch. I keep asking Greg to find it and pop it because I swear it's there, but he keeps saying there is nothing. We will see how they feel tomorrow and make the decision of whether to cancel this Thursday or not.
As this has all ended, I am going to believe the circle of bad events has come to a close. My grandmother died on April 6th, exactly two months, to the day, prior to her 100th birthday. But April 6th is also the day that one year ago, I had my foot surgery that ended up turning into RSD. So April 6th, 2012 started the chain reaction of bad events and I am going to believe that April 6th, 2013 has closed that circle. With my mom and now my grandma both up in heaven, my life surely has to be even more blessed with two Guardian Angels looking out for me.
Sunday, March 17, 2013
Back On Track ...........
3/17/13--Sunday--Day 155--So Far, So Good
It's been three days since chemo #6 after taking a week off. While some of my toes remain numb, the good news is, they haven't become worse. My last two toes on my left foot and my little toe on my right foot are still numb. The balls of both feet still tingle with a numbing sensation, the left worse than the right, and while the numbness has become a bit more intense, it hasn't spread, thank goodness.
Friends have played an important part of getting through this emotionally challenging week of realizations. Last weekend, our good friends, Mike and Suzie came from Albuquerque, then Wednesday we drove over the night before chemo and spent the evening with our good friends, Paul and Diane. Both were much needed. When you're uptight, anxious, or down, sometimes you just need to spend time with people who care. Even though they can't really fix anything, or do anything, just being around them makes you smile and feel better. Talking, relaxing, and laughing did a world of good to change my outlook.
We were anxious to see Dr. Cianfrocca on Thursday even if it meant having to be at labs by 8:15AM. Her explanation of the numbness was basically, the numbness isn't always permanent, but there is no way to guarantee that it will go away. So the new game is, we have to stop the Taxol BEFORE the numbness gets to a state that would inhibit my mobility should the numbness be permanent. There is a different drug, Taxotere, which we could switch to, but Dr. C said it wasn't as effective and it had other bad side effects so it was Dr. C's last choice of options. She wanted me to stay on Taxol, if at all possible, because it is the best drug to treat breast cancer. She explained that in clinical trials, Taxol had been shown to be the most effective drug when given in 12 weekly doses; however, after the study, researchers amended the study showing that as long as the 12 doses were given within a 16 week period, it was just as effective. So, what does all of this mean? Well, first, it means skipping a week between chemo #5 and #6 didn't hurt anything. It also means that should my feet start to go numb again, I could skip up to three more times and still finish the 12 treatments within 16 weeks. Dr. C suggested we go ahead with chemo #6 at the same strength, and see how the week goes. If the numbness comes back, which so far it hasn't become as bad as it was, then she will look at possibly lowering the dose this next week.
So after labs and seeing Dr. C, we headed upstairs to start chemo. Cheryl was my nurse once again. All went well with the infusion, although I did get a little sleepy. On the way home, we stopped for a few minutes to see my grandma, aunt, and dad then headed home. Friday morning I went to work as normal, but by the afternoon, I was struggling. When I left work, I came home and laid on the floor putting my feet up on the couch hoping to help drain some of the poisons from my feet since they had been down all day. While laying there, I progressively got worse. I was exhausted, my body ached, the palms of my hands burned (that was a new one), and I was nauseous. Greg made me take a nauseous pill and I was finally able to get some toast down and then went to bed. Saturday morning I woke up and felt fine. I was glad my feet hadn't become more numb. I worked in the yard most of the day with Greg. I had to take it slow, take lots of breaks, and drink tons of water, but I managed to work the whole day. Sunday I woke up feeling fine once again. I worked completing small tasks around the house most of the day with no problems. Once again, it just proves that the effects from all of this are unpredictable as to when they hit. I was thankful I only had a bad day on Friday afternoon this week.
I laughed telling Greg my body appreciated feeling good and having the week off last week so now it is rebelling after starting the Taxol again. We are both keeping our fingers crossed that the numbness will not spread or get any worse. After talking to Dr. C and putting everything into perspective, I've come to accept that if I have to live with some neuropathy for the rest of my life in order to truly kill the cancer that may still be in my body, at least I'll be alive and it will be okay. I know that when we took a break from the Taxol, some of the numbness subsided, and I am keeping a positive belief that when we stop the Taxol all together after another six treatments, the numbness will eventually go away completely. So while I am still on that difficult back side of the marathon, I have refocused on why I'm running it--a perspective that has definitely put me Back on Track!
It's been three days since chemo #6 after taking a week off. While some of my toes remain numb, the good news is, they haven't become worse. My last two toes on my left foot and my little toe on my right foot are still numb. The balls of both feet still tingle with a numbing sensation, the left worse than the right, and while the numbness has become a bit more intense, it hasn't spread, thank goodness.
Friends have played an important part of getting through this emotionally challenging week of realizations. Last weekend, our good friends, Mike and Suzie came from Albuquerque, then Wednesday we drove over the night before chemo and spent the evening with our good friends, Paul and Diane. Both were much needed. When you're uptight, anxious, or down, sometimes you just need to spend time with people who care. Even though they can't really fix anything, or do anything, just being around them makes you smile and feel better. Talking, relaxing, and laughing did a world of good to change my outlook.
We were anxious to see Dr. Cianfrocca on Thursday even if it meant having to be at labs by 8:15AM. Her explanation of the numbness was basically, the numbness isn't always permanent, but there is no way to guarantee that it will go away. So the new game is, we have to stop the Taxol BEFORE the numbness gets to a state that would inhibit my mobility should the numbness be permanent. There is a different drug, Taxotere, which we could switch to, but Dr. C said it wasn't as effective and it had other bad side effects so it was Dr. C's last choice of options. She wanted me to stay on Taxol, if at all possible, because it is the best drug to treat breast cancer. She explained that in clinical trials, Taxol had been shown to be the most effective drug when given in 12 weekly doses; however, after the study, researchers amended the study showing that as long as the 12 doses were given within a 16 week period, it was just as effective. So, what does all of this mean? Well, first, it means skipping a week between chemo #5 and #6 didn't hurt anything. It also means that should my feet start to go numb again, I could skip up to three more times and still finish the 12 treatments within 16 weeks. Dr. C suggested we go ahead with chemo #6 at the same strength, and see how the week goes. If the numbness comes back, which so far it hasn't become as bad as it was, then she will look at possibly lowering the dose this next week.
So after labs and seeing Dr. C, we headed upstairs to start chemo. Cheryl was my nurse once again. All went well with the infusion, although I did get a little sleepy. On the way home, we stopped for a few minutes to see my grandma, aunt, and dad then headed home. Friday morning I went to work as normal, but by the afternoon, I was struggling. When I left work, I came home and laid on the floor putting my feet up on the couch hoping to help drain some of the poisons from my feet since they had been down all day. While laying there, I progressively got worse. I was exhausted, my body ached, the palms of my hands burned (that was a new one), and I was nauseous. Greg made me take a nauseous pill and I was finally able to get some toast down and then went to bed. Saturday morning I woke up and felt fine. I was glad my feet hadn't become more numb. I worked in the yard most of the day with Greg. I had to take it slow, take lots of breaks, and drink tons of water, but I managed to work the whole day. Sunday I woke up feeling fine once again. I worked completing small tasks around the house most of the day with no problems. Once again, it just proves that the effects from all of this are unpredictable as to when they hit. I was thankful I only had a bad day on Friday afternoon this week.
I laughed telling Greg my body appreciated feeling good and having the week off last week so now it is rebelling after starting the Taxol again. We are both keeping our fingers crossed that the numbness will not spread or get any worse. After talking to Dr. C and putting everything into perspective, I've come to accept that if I have to live with some neuropathy for the rest of my life in order to truly kill the cancer that may still be in my body, at least I'll be alive and it will be okay. I know that when we took a break from the Taxol, some of the numbness subsided, and I am keeping a positive belief that when we stop the Taxol all together after another six treatments, the numbness will eventually go away completely. So while I am still on that difficult back side of the marathon, I have refocused on why I'm running it--a perspective that has definitely put me Back on Track!
Tuesday, March 12, 2013
Sometimes There's Just a Down Side..............
3/12/13--Tuesday--Day 150--The Backside of the Marathon
It's been a tough few days, not necessarily physically, but emotionally. So much has happened in these last five months. In one sense, October seems like forever ago--in another, it seems like just yesterday. But through it all, I've tried really hard to keep a positive attitude. I tell myself that this is just a chapter in my book, but for many, cancer will be a part of the rest of their story. I tell myself that breast cancer is a curable cancer, but many live knowing they will die from a terminal cancer. I tell myself cancer will only have stolen a year from my life, while others spend years fighting it. I tell myself that in six more months, this will be finished and my "normal" pre-cancer life will return, but I'm starting to realize cancer has changed my life forever.
So while I try to stay positive, every once in awhile, it's hard--really hard. There is just a down side. You see, I'm sort of on the back side of the marathon--that dark side where there are no crowds around and you have to run all by yourself. At the beginning, there are tons of people encouraging you, supporting you and telling you that you can do this. And they have never left. They're still at the finish line waiting for you--waiting to cheer you on and let you know just how proud they are of you for being so strong. But somewhere in between, there is this dark side that you have to run by yourself. You know you have tons of supporters and you carry them in your heart, but for now, you are alone because no one else is allowed on this part of the course with you.
This is also the scary part of the marathon. At the beginning, it was well lit, well laid out, and you were pumped up about conquering what was in front of you. But now you have to navigate the course yourself adjusting to the varying terrain, the unpredictable weather, and the surprising obstacles you never imagined were out there. And, as you do all of this, you're exhausted and just want to quit, but you know you can't. You know you just have to keep putting one foot in front of the other and forcing yourself to keep going. What other choice do you have? This is the part of the marathon where you want to cry--where everything on your body hurts, and you continually wonder how you'll make it to the end.
Right now I am struggling as I realize, this marathon has changed me. While the finish line is back where I started, when I reach it, I won't be the same person who started the race, neither physically nor mentally. Running this marathon, I've received some injuries, and while I know they will heal, those parts of my body will never be the same.
This weekend I think the reality of the marathon I'm running finally set in. I realized cancer has permanently changed my "normal" life, and even when all the treatments and surgeries and medicines are over, I will never be who I was last October. I guess I believed that cancer was going to steal a year from me, but when it was over, when I had finished all of the treatments and done everything the doctors told me to do, I would be back to "normal". In reality, cancer and chemo will leave behind scars which may affect me the rest of my life.
Last week I skipped chemo because I developed neuropathy (numbness) in my feet. While I knew that was a possible side effect, I thought once I was finished with chemo, the numbness would go away. The more I've read, the more I realize there is a good chance the numbness may be a permanent condition. On Saturday, my big toes woke up. That was encouraging They had been numb for 12 days. On Sunday, my toes on my right foot seemed to be waking up leaving just the small toe and the ball of my foot numb. On my left foot, I could feel two more toes which left my last two toes and the ball of my left foot still numb. At first, I was excited because maybe this means the neuropathy is only a temporary condition, and maybe it is. But as of tonight, there are no additional improvements. I keep thinking to myself, "I'm 48 years old. How in the world can I go through the rest of my life with numb feet?" Plus, my two right fingers are still numb from the surgery. Having my axillary and sentinel lymph nodes removed means going in a hot tube, something I've always loved, could result in lymphedema, so my hot tub days are pretty much over. I can't give blood ever again because of the chemo. Slowly I've started realizing, in October, when this is all over, I'm not just going to pop back to normal. There will be a whole new normal in which I'll have to learn to accept and live. And while I am grateful, and thankful, and very happy that I will be well and alive, I realize I will now have a large tail which will drag behind me from now on. My new normal will be a world apart from my old normal.
Forgive me for what sounds like the "poor me's". I guess it is. I guess I'm just tired. A year ago a crazy dark cloud came over me as what was supposed to be a simple foot surgery went bad. Then my mom died and took a huge piece of my heart with her. After that, Brooklyn moved away leaving us empty nesters. While we missed our kiddos, we embraced this new phase in our life realizing we could recreate ourselves. But that quickly turned into a nightmare as a simple lump became a simple cancer, which became stage 3 cancer, which led to lymph node removals, which led to a 12cm abdominal tumor, which led to a hysterectomy, after which chemo started which has led to numb feet that may be permanent, and I haven't even started the hard chemo of phase II. So here I am, almost a year after my foot surgery still in the middle of this dark cloud. And while I've stayed strong, I've kept smiling, and I've made my own sunshine as much as possible, I guess I'm just in the tired phase as I realize I have a long way to run on the backside of this marathon.
P.S. I really will be okay. I use this blog to record all of my feelings, even the not so happy ones :) I am thankful to be alive and I don't want anyone to worry that I've lost myself in self-pity. I'm still smiling and i know this path will get better :)
It's been a tough few days, not necessarily physically, but emotionally. So much has happened in these last five months. In one sense, October seems like forever ago--in another, it seems like just yesterday. But through it all, I've tried really hard to keep a positive attitude. I tell myself that this is just a chapter in my book, but for many, cancer will be a part of the rest of their story. I tell myself that breast cancer is a curable cancer, but many live knowing they will die from a terminal cancer. I tell myself cancer will only have stolen a year from my life, while others spend years fighting it. I tell myself that in six more months, this will be finished and my "normal" pre-cancer life will return, but I'm starting to realize cancer has changed my life forever.
So while I try to stay positive, every once in awhile, it's hard--really hard. There is just a down side. You see, I'm sort of on the back side of the marathon--that dark side where there are no crowds around and you have to run all by yourself. At the beginning, there are tons of people encouraging you, supporting you and telling you that you can do this. And they have never left. They're still at the finish line waiting for you--waiting to cheer you on and let you know just how proud they are of you for being so strong. But somewhere in between, there is this dark side that you have to run by yourself. You know you have tons of supporters and you carry them in your heart, but for now, you are alone because no one else is allowed on this part of the course with you.
This is also the scary part of the marathon. At the beginning, it was well lit, well laid out, and you were pumped up about conquering what was in front of you. But now you have to navigate the course yourself adjusting to the varying terrain, the unpredictable weather, and the surprising obstacles you never imagined were out there. And, as you do all of this, you're exhausted and just want to quit, but you know you can't. You know you just have to keep putting one foot in front of the other and forcing yourself to keep going. What other choice do you have? This is the part of the marathon where you want to cry--where everything on your body hurts, and you continually wonder how you'll make it to the end.
Right now I am struggling as I realize, this marathon has changed me. While the finish line is back where I started, when I reach it, I won't be the same person who started the race, neither physically nor mentally. Running this marathon, I've received some injuries, and while I know they will heal, those parts of my body will never be the same.
This weekend I think the reality of the marathon I'm running finally set in. I realized cancer has permanently changed my "normal" life, and even when all the treatments and surgeries and medicines are over, I will never be who I was last October. I guess I believed that cancer was going to steal a year from me, but when it was over, when I had finished all of the treatments and done everything the doctors told me to do, I would be back to "normal". In reality, cancer and chemo will leave behind scars which may affect me the rest of my life.
Last week I skipped chemo because I developed neuropathy (numbness) in my feet. While I knew that was a possible side effect, I thought once I was finished with chemo, the numbness would go away. The more I've read, the more I realize there is a good chance the numbness may be a permanent condition. On Saturday, my big toes woke up. That was encouraging They had been numb for 12 days. On Sunday, my toes on my right foot seemed to be waking up leaving just the small toe and the ball of my foot numb. On my left foot, I could feel two more toes which left my last two toes and the ball of my left foot still numb. At first, I was excited because maybe this means the neuropathy is only a temporary condition, and maybe it is. But as of tonight, there are no additional improvements. I keep thinking to myself, "I'm 48 years old. How in the world can I go through the rest of my life with numb feet?" Plus, my two right fingers are still numb from the surgery. Having my axillary and sentinel lymph nodes removed means going in a hot tube, something I've always loved, could result in lymphedema, so my hot tub days are pretty much over. I can't give blood ever again because of the chemo. Slowly I've started realizing, in October, when this is all over, I'm not just going to pop back to normal. There will be a whole new normal in which I'll have to learn to accept and live. And while I am grateful, and thankful, and very happy that I will be well and alive, I realize I will now have a large tail which will drag behind me from now on. My new normal will be a world apart from my old normal.
Forgive me for what sounds like the "poor me's". I guess it is. I guess I'm just tired. A year ago a crazy dark cloud came over me as what was supposed to be a simple foot surgery went bad. Then my mom died and took a huge piece of my heart with her. After that, Brooklyn moved away leaving us empty nesters. While we missed our kiddos, we embraced this new phase in our life realizing we could recreate ourselves. But that quickly turned into a nightmare as a simple lump became a simple cancer, which became stage 3 cancer, which led to lymph node removals, which led to a 12cm abdominal tumor, which led to a hysterectomy, after which chemo started which has led to numb feet that may be permanent, and I haven't even started the hard chemo of phase II. So here I am, almost a year after my foot surgery still in the middle of this dark cloud. And while I've stayed strong, I've kept smiling, and I've made my own sunshine as much as possible, I guess I'm just in the tired phase as I realize I have a long way to run on the backside of this marathon.
P.S. I really will be okay. I use this blog to record all of my feelings, even the not so happy ones :) I am thankful to be alive and I don't want anyone to worry that I've lost myself in self-pity. I'm still smiling and i know this path will get better :)
Friday, March 8, 2013
Chemo #'s 4, 5 and Almost 6--Our First Cancelled Chemo!
3/3/13--Thursday--Day 145--It's All Still Completely Unpredictable!
Sorry that it's been so long since I've posted. It seemed like things had become so routine but just when you think you've got everything figured out and under control, chemo puts you in your place.
When I went in for chemo #4, the day after my last post, I had a completely unexplainable bad reaction for the second time. The morning started by us leaving extra early because of a bizar winter storm that hit Arizona bringing snow even in Mesa and Scottsdale. The Superior Mountains had been closed the afternoon before, so the morning of chemo, we left early driving by a desert covered in snow all the way through Superior. With no delays, we arrived in town an hour early so we stopped at Kohls to look for some hats and scarfs since coordinating my wardrobe continues to be a challenge.
Our friend Jan and my dad both decided to meet us for chemo#4. It is always nice to have company during the treatment because it makes the time go so much faster. This time labs were a challenge. The girl accessing my port tried twice but kept missing it. Thank goodness for the Lidocaine cream. That was the first time I realized my port was relatively deep. She called for a different nurse who had accessed me before. On the third stick they were able to access it successfully. At that point I made a mental note of where they successfully accessed it relative to the scar so I could help if someone had trouble in the future. After labs, we went up to the infusion floor and I was lucky enough to get Cheryl, the same nurse I've had each time. She enjoyed meeting my dad and Jan. We did everything exactly the same. We did the slow drip for the Benadryl and Pepcid. We waited 30 minutes between the Dexamethasone and starting the Taxol. But for some reason, shortly after the Benadryl started, my head started spinning and I was dizzy. It was bearable but after starting the Taxol, my feet started going numb again and the dizziness eventually forced me to sleep. I was looking forward to visiting with my dad, but I slept through most of the treatment. When I woke, I felt less dizzy so I didn't have a problem walking to the car, but my legs bothered me all the way home and I slept even more. Cheryl recommended we talk with Dr. Cianfrocca at our next week's appointment and go either with an oral Benadryl or switch to a different antihistamine for the next treatment. At that point, we were convinced the numb feet were a result of a sensitivity to Benadryl because it had only happened on chemo #1 and now chemo #4. And the numbness disappeared the next day in both cases.
I went to work on Friday, as normal and that following Saturday, Greg went back to Phoenix for the drag races with Preston. I was supposed to go to my Aunt Mary's to plan my grandma's 100th birthday in June, but unfortunately, Friday night my grandma went into the hospital. Since the hospital wasn't the best place for me to hang out, I decided to stay home Saturday and do some small tasks around the house. Sunday we decided to completely relax to see if my activity level was adding to my bad Sundays. We stayed in bed watching the Daytona 500 while it snowed outside (another strange Arizona storm). Resting all day seemed to help as I had didn't seem to get sick at all.
On Tuesday, we decided to go visit my grandma in Mesa. Despite our relaxing weekend, by the end of the day on Tuesday, my feet went numb and I started having difficulty walking as we left to head back home. Greg and I were both confused. Up to this point, I had only experienced the numbness in my feet on the days of chemo #1 and chemo #4 when I had bad reactions. We had assumed it was part of the Benadryl reactions I seemed to have but having it on Tuesday made no sense. We hoped it was because it had been a long, tiring day and it would go away by morning. Unfortunately, it didn't. Wednesday morning, the numbness was still there, though not as intense. I was in a meeting all morning and the numbness was mild, but by 11, it was more intense and I was having to concentrate to walk. By the end of the day, I almost called Greg to drive me home.
Thursday brought another trip to Mesa and chemo #5. Fortunately it was our four-week checkin with Dr. C. I knew my chemo nurse, Cheryl, was working in the lab that day as the nurses all rotate to the lab to help access ports. She successfully accessed my port so at least I was able to see her, even though she wouldn't be my chemo nurse for the day. From labs we met with Dr. Schlumbrecht (AKA Dr. Matt), the gynecology surgeon, for our six week checkup. After the exam, he was pleased with how well I had healed. I explained that first two fingers on my right hand were still numb. The doctors have known that they had been numb since the surgery and suspected that it was caused from my hand being bent for the nine-hour surgery. They suspected I had a pinched median nerve which should heal on its own within six weeks. Since it hadn't, Dr. Matt recommended I see the neurologist who saw me in the hospital as well as Leona, the lymphedema specialist I had been seeing. She is also a physical therapist. Other than that, he explained he would see me in three more months. When I asked how often he would see me and for how long, he explained that at the next visit, they would do tumor markers (a blood test), and he would begin feeling more of my abdomen making sure there was no regrowth of tumors. I will see him every three months for the first year, every four months for the second year, and every six months for years three, four, and five.
After Dr. Matt, we were scheduled to see the breast oncologist, Dr. Cianfrocca. To our surprise, her assistant, Michelle, came in instead. Dr. C had had knee surgery that week and while she had been seeing patients, she had started hurting and was going home. So we asked Michelle all of the questions we had saved up for Dr. C. The first was regarding my feet, which were still numb. We explained how the numbness had started Tuesday and, while it is better sometimes and worse sometimes, it is always present. We also explained how it created what I would call restless legs, especially while I'm sleeping or while riding in a car. My legs just want to move, without me even realizing it. She recommended we see our family doctor insisting that it was unrelated to the chemo. That really threw me. I told her that didn't really make sense since it began the very first day of chemo, had happened during chemo four, and now is regular. She again said it would be a very A-typical situation since that wasn't a known side effect of chemo. When she left the room, I was very uncomfortable and felt a little dismissed. We were waiting for the nurse to come in and complete the visit when suddenly Dr. C and Michelle came back in. Dr. C explained she was waiting for her husband to pick her up so wanted to go ahead and see me while she waited. I was a little startled and felt somewhat odd since I had already asked our questions to Michelle, but I did want to discuss my feet being numb. She immediately said tingling and numbness in the feet and hands is a known side effect of Taxol. Greg and I just looked at each other because we had just been told something opposite. Dr. C said it should go away when we stopped the Taxol but she could give me something to help relieve the symptoms. She also said we could slow things down or change the Taxol if it was bad or got worse, but she suggested we see how the next week went so we agreed.
From there we headed to the infusion floor only to find out my blood had clotted in the tube and we had to redo the lab work so back down to the first floor we went. While waiting another 30 minutes for the new lab work to be processed, we ate at the Bristro then headed back to the third floor. We were taken back and, for the first time, had a different chemo nurse, Carolyn, since Cheryl was down in the lab for the day. Carolyn called up my lab work and was concerned because my platelets were high, 650, when they had been 350 the week before. It didn't make sense to me. She called the doctor and just after doing so, she realized she had pulled up the wrong chart. Oh my goodness! It was like a day full of mistakes!!!! My platelets were fine, in the 350's like they had been, and so we quickly proceeded. That small mistake made me glad they have two nurses check the chemo before starting it. Dr. C had decided to try me on Claritin instead of Benadryl since I had had such bad reactions. Claritin is an oral med so we had to wait a little longer but it was worth it as it caused me no reactions. I was also done with the Dexamethasone, the steroid, which was also nice. Now it was just the Claritin and Pepsi before the Taxol. Our friend Jan met us again to keep us company and Preston came this time as well. Everything went flawlessly. There was no sleepiness and no reactions. My feet were numb, but didn't get any more numb than they had been since Tuesday. Cheryl stopped by upstairs to see how things were going. In addition, Leona came up to see me as well. She said she had some physical therapy exercises that might help my hand numbness which she would show me next week at our appointment. She suggested we try that as well as the chiropractor before going to a neurologist. The trip home was good as well. Though I had the numbness, the restlessness was less. Physically, it was the best chemo session I have had.
Friday brought a little different story. Though I went to work as normal, I did not feel well at all. From diarrhea to an upset stomach to just feeling completely warn out, suddenly Friday seemed to be my bad day. I made it through the workday, and when I got home, even though I wasn't feeling well, we thought we would go on our normal walk, hoping that would help me feel a little better. That was a mistake. Though we only took the 1.75 mile route, by the time I got home, I was exhausted. I went upstairs immediately and fell asleep for three hours. When I got up, I was nauseated, which I haven't really been at all. I was afraid I would be sick all weekend, but Saturday and Sunday I felt okay. In fact, we worked doing small tasks all weekend and other than being tired, I felt pretty good, even on Sunday. That's when I realized this is going to be completely unpredictable. I was no longer going to be able to predict my bad day was going to be on Sunday or what my reactions were going to be. All I knew was my feet were still numb, no matter what I did.
This past week I only worked Monday and Tuesday as we had to move Preston into his new apartment on Wednesday. Both days my feet continued to be numb and by afternoon, I limped when walking. We decided to look up side effects of Taxol and read a little about it. Suddenly, Greg and I both started worrying a bit. Most of the people who had posted said that the numbness either hadn't gone away after a few months off of Taxol or had not gone away at all and was permanent. We had both thought we understood Dr. C to say that once the Taxol stopped the numbness would stop. But that wasn't exactly what we were reading. Though some posts said the effects were not permanent, it was unsettling.
Tuesday afternoon we decided to head to Preston's instead of gettng up early Wednesday. Wednesday was a busy day as we moved Preston out of his second story apartment into another second story apartment across the courtyard. If it hadn't been for the stairs, it would have been an easy move. I realized going down stairs was much harder than going up. That was because I had a hard time feeling my feet as they went down. I also realized my up and down stairs trips had to be limited as I just wore out so quickly. Instead, I focused on cleaning the old apartment while Greg and Preston finished moving everything over. As expected, Wednesday night I was exhausted, but we all were.
Thursday we got up early and went to visit my grandma who was back home at my aunt's. While the visit was short, it was nice to see her. At the cancer center, labs went without incident and then we went to the second floor to see Leona. She started by showing me exercises she wanted me to complete to help with the numbness in my right fingers. She also recommended we see a hand specialist. When we asked her if there was anything we could do about the numbness in my feet, she confirmed our fears about there being a chance this might be permanent. She explained that there is a shield around the nerve, sort of like a straw called Myelin. The drugs used in chemo are so caustic, they can eat into the Myelin causing pitting which exposes the nerves and causes the numbness. Because our body doesn't regrow or repair our Myelin, it can be permanent. She clarified that this is not always the case. Many times it is temporary plus there is a drug that can help relieve some of the symptoms. She explained the importance of catching it early and then either lowering the dose of Taxol or changing it all together for a different chemo drug. She then decided to go to Michelle, Dr. C's assistant, and let her know I've been experiencing the numbness for the last nine days and see what they wanted to do. When she returned, she said they were going to go ahead with the chemo today, and have me see Michelle next week.
As we left her office and headed to the elevator, I began to get more scared than I had been. Tears suddenly welled up in my eyes and a slight panic set in. I'm only 49 years old. Cancer was going to take a year from my life, a toll on my body, but I didn't think I would have permanent damage after this was over! I can't have my feet numb like this for the rest of my life! I was suddenly scared. As we got out of the elevator on the third floor, I went into the bathroom to pull myself together. I can't panic. Maybe this would go away.
We were called back to start the infusion and luckily I had Cheryl again. As I sat down and she started asking me about any symptoms or reactions, I explained that last week went well with the Claritin but the numbness in my feet had been present for nine days. She asked if it had affected my walking and I told her that as I got tired, it did. She was very concerned and said she didn't feel comfortable proceeding until she talked with the doctor. I explained the mixed messages we received the previous week between Michelle and Dr. C and that Leona had already talked to someone, but I wasn't sure who. Cheryl decided she wanted to call herself. She called the nurse who talked with Dr. C. who said we should not proceed with the chemo this week. We were going to take a week off and see if the symptoms went away or became less severe and then we would see the doctor next week to decide how to proceed. Cheryl suggested they would most likely lower the dose of Taxol I was receiving or change to a completely different chemo drug. I was relieved, to be honest. I would rather travel the safe road and be cautious then risk permanent damage because I didn't speak up.
So no chemo #6. Though this would mark the halfway point of this first part of chemo, we are on hold. Hopefully the numbness will subside over this week or at least become less intense. Cheryl didn't know if this would delay everything by a week, or if they would just skip #6 and just move to #7 so I guess the doctor will let us know next week. What I know now is just when you think you have it all figured out and you've found a way to try and live a somewhat normal life around all of this, you can't really count on anything because it's all still completely unpredictable.
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