I feel so manic today. I'm sitting at the computer and Steve is asleep and I'm listening to the kids getting chips out of the pantry at 9:45 in the morning. I know I should be monitoring them better but I'm trying to decide what to do today. And I have about 20 ideas of what I want to do, including buying tile to tile my coffee table, go shopping for a birthday gift for the neighbor, updating the blog, drafting a letter that I've been meaning to write, etc... There's so much to do and so little time and I am just overwhelming myself with the possibilities. And by so little time I mean before I have to do chemo #4 on Tuesday. After that I will be in bed for a week, barely able to lift my head and I feel like I have to fit in a week's worth of errands and stuff I want to do.
I probably should go outside and pull weeds to clear my head. But these few days before chemo create absolute chaos in my mind and all I can do is think. It's almost impossible to quiet my mind. As I've been sitting here at the computer I had a memory of being in the hospital and Dr. Dave came to talk to me after the colon cancer diagnosis. I will never forget what he told me, "If you want to eat an ice cream you should eat an ice cream. And when you go home you should get your affairs in order." He told me to get my affairs in order!!! What the F@$*???!!! I think about that a lot because I am determined NOT to get my affairs in order. I am only 38 years old for goodness sake. And so when I am feeling manic and I have a million ideas about what to do today, getting my affairs in order is never one of them.
Sunday, May 3, 2009
Thursday, April 23, 2009
Trying Hard to Stay Strong
Hey everybody... Sorry I've been away for awhile. Recovering from the last infusion was so hard I almost can't find the words to describe how hard it was. I now understand how this process really gets to people, dashes their hopes for recovery and sends them into an abyss of pain and fear. This is by far the hardest thing I have ever done.
The infusion itself was painful. My arm hurt so bad that the nurse urged me to consider a PICC line. I am actually considering it. I guess the poison really irritates the veins and muscles and it hurts like hell. And I actually got sick a couple of times during the infusion which has never happened before. So the anti-nausea meds they put in my IV were either not working or my brain overrode them and told my body to be nauseated anyway, I don't know. But after the infusion I spent a long week in bed feeling terribly nauseated and so fatigued I had a hard time walking to the bathroom. I found myself frequently asking Steve, "Is this my bad day? When will I get better?" Also, this time I noticed that all my muscles, especially my leg muscles were cramping really bad. The neuropathy is still bad even during this good week. The doctor said that neuropathy is permanent. I don't even know what to think about that. But I haven't had anything cold to drink in a very long time.
However, this is my good week. I feel myself getting stronger everyday...and by stronger I mean mentally stronger. Even just a week ago I was having fantasies about things I could say to the doctor so that I wouldn't have to do anymore chemo. I just didn't have the strength to even consider doing another round. But this week things are different. I am happy to be alive and I find myself appreciating everything and everyone so much more. Although I still can't even think about going for round 4, I am in a better place in my head. I hear stories on the news where someone, or a lot of people, have it a lot worse than me and I think to myself, I guess I can do it again. I'm pretty sure that's because you are all praying for me and your prayers are working.
I started reading the new true crime novel, "Columbine" by Dave Cullen. Other than the fact that I find it truly fascinating and therefore, it's a distraction from my negative thoughts, I realize that those poor parents who had children involved in that massacre really had, and still have, it bad. There's a quote from Ernest Hemingway at the beginning of the book:
The world breaks everyone and afterward many are strong at the broken places.
And to that I say touche.
The infusion itself was painful. My arm hurt so bad that the nurse urged me to consider a PICC line. I am actually considering it. I guess the poison really irritates the veins and muscles and it hurts like hell. And I actually got sick a couple of times during the infusion which has never happened before. So the anti-nausea meds they put in my IV were either not working or my brain overrode them and told my body to be nauseated anyway, I don't know. But after the infusion I spent a long week in bed feeling terribly nauseated and so fatigued I had a hard time walking to the bathroom. I found myself frequently asking Steve, "Is this my bad day? When will I get better?" Also, this time I noticed that all my muscles, especially my leg muscles were cramping really bad. The neuropathy is still bad even during this good week. The doctor said that neuropathy is permanent. I don't even know what to think about that. But I haven't had anything cold to drink in a very long time.
However, this is my good week. I feel myself getting stronger everyday...and by stronger I mean mentally stronger. Even just a week ago I was having fantasies about things I could say to the doctor so that I wouldn't have to do anymore chemo. I just didn't have the strength to even consider doing another round. But this week things are different. I am happy to be alive and I find myself appreciating everything and everyone so much more. Although I still can't even think about going for round 4, I am in a better place in my head. I hear stories on the news where someone, or a lot of people, have it a lot worse than me and I think to myself, I guess I can do it again. I'm pretty sure that's because you are all praying for me and your prayers are working.
I started reading the new true crime novel, "Columbine" by Dave Cullen. Other than the fact that I find it truly fascinating and therefore, it's a distraction from my negative thoughts, I realize that those poor parents who had children involved in that massacre really had, and still have, it bad. There's a quote from Ernest Hemingway at the beginning of the book:
The world breaks everyone and afterward many are strong at the broken places.
And to that I say touche.
Friday, April 10, 2009
Having Anxiety Already
It's Friday night which means it's almost Saturday and if it's Saturday then the weekend is almost over...
What's wrong with me?!?!?! I have so much anxiety about Monday. On Monday I do chemo #3. I hate chemotherapy. When I feel like this I almost don't know what to do. Do I eat while I can? If I choose to eat, well I just want to eat a bag of Pepperidge Farm Milano cookies. And that's not good for me. But at the same time, thinking about Monday creates the dreaded "anticipatory nausea" so maybe I just want to barf into a bag of Milanos. I DON'T KNOW!!!
I wonder when this gets better. Today I had to take Janie to the doctor for an ear infection. Nurse Carol asked why I wasn't at the kids' Kindergarten physcials and I told her. I was in bed from chemo #2. She was shocked and saddened and offered her support. Her husband, she said, was diagnosed with stage IV Lymphoma when he was 38. It's been about 10 years and he's fine now. We didn't see our normal pediatrician because she's always booked but after we left the office, Carol told Dr. G (our pediatrician) about my situation. Dr. G called me at home to offer her support. She is a breast cancer survivor. She was diagnosed a year ago and she endured 8 rounds of chemotherapy. EIGHT ROUNDS!!!! She's still growing her hair back because last time I saw her (about a month ago) she was still wearing her wig.
I don't want to ruin my good days with thoughts of the bad days ahead but it's almost unavoidable. I might as well have an hourglass in front of me at all times counting down the minutes until Monday. I got my hair trimmed yesterday and my hairdresser wanted to know how I've been doing with the chemo. I told her the smell of my shampoo and conditioner nauseates me terribly during the bad week so she helped me find something less fragrant.
I should've titled this post, "Poor Me!" OK, enough complaining. Like I tell the kids, deep breath...
What's wrong with me?!?!?! I have so much anxiety about Monday. On Monday I do chemo #3. I hate chemotherapy. When I feel like this I almost don't know what to do. Do I eat while I can? If I choose to eat, well I just want to eat a bag of Pepperidge Farm Milano cookies. And that's not good for me. But at the same time, thinking about Monday creates the dreaded "anticipatory nausea" so maybe I just want to barf into a bag of Milanos. I DON'T KNOW!!!
I wonder when this gets better. Today I had to take Janie to the doctor for an ear infection. Nurse Carol asked why I wasn't at the kids' Kindergarten physcials and I told her. I was in bed from chemo #2. She was shocked and saddened and offered her support. Her husband, she said, was diagnosed with stage IV Lymphoma when he was 38. It's been about 10 years and he's fine now. We didn't see our normal pediatrician because she's always booked but after we left the office, Carol told Dr. G (our pediatrician) about my situation. Dr. G called me at home to offer her support. She is a breast cancer survivor. She was diagnosed a year ago and she endured 8 rounds of chemotherapy. EIGHT ROUNDS!!!! She's still growing her hair back because last time I saw her (about a month ago) she was still wearing her wig.
I don't want to ruin my good days with thoughts of the bad days ahead but it's almost unavoidable. I might as well have an hourglass in front of me at all times counting down the minutes until Monday. I got my hair trimmed yesterday and my hairdresser wanted to know how I've been doing with the chemo. I told her the smell of my shampoo and conditioner nauseates me terribly during the bad week so she helped me find something less fragrant.
I should've titled this post, "Poor Me!" OK, enough complaining. Like I tell the kids, deep breath...
Tuesday, April 7, 2009
Having a Great Week
Hey everyone! Well, I'm having a great week. And I don't mean that sarcastically. I am actually having a really good week. Considering the last chemo cycle was harder than the first, I seemed to have bounced back really well. I wouldn't dare tell my hubby this, but I even ran on the treadmill a little bit on Sunday. If Steve finds out, he'll start making me do housework again so I'm keeping it on the down low for now. Even though the doctor said that the chemo regimen itself is like a workout, I find that running gives me the mental and emotional edge I need to feel like I am strong...like I can pull myself through all of this. I've spent the last two beautiful, 80 degree days pulling weeds, which I find strangely therapeutic. I love the time to myself because, of course, no one (and by no one I mean none of the kids) wants to help pull weeds. So there are no distractions and I get lost in my thoughts.
Yesterday I took a break from the gardening to watch Oprah. Her guests and audience members were all mothers who were essentially complaining about how hard motherhood is. While I appreciated the humor in it (one lady was so overwhelmed she went 3 weeks without bathing her kids!), I couldn't help but feel like these women were all a bunch of whiners. I hate to get on my pedastal but c'mon! Even in my most overwhelming days when I had three infants and no diapers in the house, I still managed to shower, load them all up in the car, and load, assemble and push gigantic stroller through Target with at least one crying baby. Thank God they never all cried at one time... But I did it because I had to. I had no choice because I couldn't justify taping a maxi pad and a bunch of napkins on their little butts like one of the women on Oprah confessed. Whoa!
My kids will be five in June. And I thank God everyday for those little people. They prepared me for this journey I am on. Just like finding strength through a hard workout on the treadmill, I have found strength and purpose in being a mom. I like the fact that their little four year-old minds can stump me when they ask me what the Easter Bunny looks like. By the way, exactly what does the Easter Bunny look like and where does he live???? Any ideas? I love you guys and thanks for keeping me in your thoughts and prayers. They are working.
Yesterday I took a break from the gardening to watch Oprah. Her guests and audience members were all mothers who were essentially complaining about how hard motherhood is. While I appreciated the humor in it (one lady was so overwhelmed she went 3 weeks without bathing her kids!), I couldn't help but feel like these women were all a bunch of whiners. I hate to get on my pedastal but c'mon! Even in my most overwhelming days when I had three infants and no diapers in the house, I still managed to shower, load them all up in the car, and load, assemble and push gigantic stroller through Target with at least one crying baby. Thank God they never all cried at one time... But I did it because I had to. I had no choice because I couldn't justify taping a maxi pad and a bunch of napkins on their little butts like one of the women on Oprah confessed. Whoa!
My kids will be five in June. And I thank God everyday for those little people. They prepared me for this journey I am on. Just like finding strength through a hard workout on the treadmill, I have found strength and purpose in being a mom. I like the fact that their little four year-old minds can stump me when they ask me what the Easter Bunny looks like. By the way, exactly what does the Easter Bunny look like and where does he live???? Any ideas? I love you guys and thanks for keeping me in your thoughts and prayers. They are working.
Sunday, March 29, 2009
Sorry It's Been a While
Hi everyone. Sorry it's been so long since the last post. After the first week of the first round of chemo, I started feeling better and wanted to take advantage of my good days. So I didn't spend much time on the computer. Nothing noteworthy happened anyway. When I started feeling better I got outside and did some gardening (by that I mean pulling weeds) and just enjoyed being out of bed.
I did my second round of chemo last monday (March 23) and it was a real bitch. I have nothing good to say about it. The new and more powerful anti-nausea medication (Emend) worked ok. I still had a lot of nausea but I managed to get through it without much "barfy" as the kids say. No matter how much I seemed to tell myself it would get better, I still found myself feeling pretty depressed about the whole thing. It's hard to explain what the physical effects of chemo are but basically it feels like my whole entire body hurts, and then of course there's the nausea. This time the neuropathy was much worse and I had to wear the gloves a lot. I think one of the worst things is having to drink warm drinks. Trying to swallow three big pills with warm water when the nausea is bad is just about one of the worst things ever. It's almost impossible so I have to go into a place in my mind where I can make it happen without throwing up. Just thinking of it is nauseating. The nurse calls that anticipatory nausea... Well DUH!!!! Of course! I just call it nausea...
Anyway, I am finally feeling much better today. I am sitting at the table for meals and I can hang out with the family. I had a little comical reprieve from the madness when Steve came home from the kids' kindergarten physical appointment on Thursday and told me how it went. Previously, the nurse led us to believe it was just a "paperwork" appointment so Steve took the kids by himself, which normally would never happen. Steve and I always both attend doctor's appointments for the kids when all three go because it is so hard for one parent to deal with the whole thing, especially when there are immunizations involved. When Steve returned home and I asked him how it went, he just looked at me with raised eyebrows. I knew that couldn't be good. Then he launched into how all three kids had to pee in a cup, have hearing tests, two shots (immunizations), and each had to have their finger pricked TWICE (lead test and sugar test)! Each child watched in horror as the others got their shots and finger pricks. And they screamed the whole time. Finally when it was Jane's turn, she kicked the examination table and then the nurse... By the end of the two-hour appointment, they were starving and they were screaming SO LOUD from all the shots and finger pricks that everyone just stared at the four of them when they left the examination room. The patient in the room next door even cracked open the door to see what those monsters could possibly look like. Steve, of course, earned his Father-of-the-Year award.
Love to you all. I promise to try to post more regularly.
I did my second round of chemo last monday (March 23) and it was a real bitch. I have nothing good to say about it. The new and more powerful anti-nausea medication (Emend) worked ok. I still had a lot of nausea but I managed to get through it without much "barfy" as the kids say. No matter how much I seemed to tell myself it would get better, I still found myself feeling pretty depressed about the whole thing. It's hard to explain what the physical effects of chemo are but basically it feels like my whole entire body hurts, and then of course there's the nausea. This time the neuropathy was much worse and I had to wear the gloves a lot. I think one of the worst things is having to drink warm drinks. Trying to swallow three big pills with warm water when the nausea is bad is just about one of the worst things ever. It's almost impossible so I have to go into a place in my mind where I can make it happen without throwing up. Just thinking of it is nauseating. The nurse calls that anticipatory nausea... Well DUH!!!! Of course! I just call it nausea...
Anyway, I am finally feeling much better today. I am sitting at the table for meals and I can hang out with the family. I had a little comical reprieve from the madness when Steve came home from the kids' kindergarten physical appointment on Thursday and told me how it went. Previously, the nurse led us to believe it was just a "paperwork" appointment so Steve took the kids by himself, which normally would never happen. Steve and I always both attend doctor's appointments for the kids when all three go because it is so hard for one parent to deal with the whole thing, especially when there are immunizations involved. When Steve returned home and I asked him how it went, he just looked at me with raised eyebrows. I knew that couldn't be good. Then he launched into how all three kids had to pee in a cup, have hearing tests, two shots (immunizations), and each had to have their finger pricked TWICE (lead test and sugar test)! Each child watched in horror as the others got their shots and finger pricks. And they screamed the whole time. Finally when it was Jane's turn, she kicked the examination table and then the nurse... By the end of the two-hour appointment, they were starving and they were screaming SO LOUD from all the shots and finger pricks that everyone just stared at the four of them when they left the examination room. The patient in the room next door even cracked open the door to see what those monsters could possibly look like. Steve, of course, earned his Father-of-the-Year award.
Love to you all. I promise to try to post more regularly.
Friday, March 6, 2009
Another Difficult Day
For some reason yesterday I thought I would wake up today and feel miraculously better. And the nausea was fairly under control, but I had such extreme fatigue that I could barely lift my head. The kids had their first swimming lessons today and I really wanted to go watch but I couldn't drag myself out of bed. It was so hard not to be there for such an important day. So while the family was gone, I began daydreaming about all of the things I want to do when I am well. First of all, I can't wait to drink an ice cold glass of milk. I know that's not too far down the road but the neuropathy is definitely a side effect that will last at least a few more days. And I can't wait to drive my car again. Recently before I got sick, I started parking in the parking spots farthest away from the door of whatever store I was at. When we were kids my mom always used to say, "We're lucky we're healthy. We can walk." Interestingly, I began doing that recently and I fully intend to do that again when I am back in action.
While my mind was perusing the possibilities, I decided I would like to try to run a marathon when I am healthy again. I've been talking about it for years and now. And it was always one of the things on my to do list but I always found an excuse to put it off. Maybe because I know it's not going to be the easiest thing to do. But dream big, right? Once my body is cancer free what a better way to celebrate than run a marathon. Maybe the chemo is starting to affect my brain and this is all just crazy talk, I don't know. But what have YOU been putting off????
I hope none of you ever has to do what I am doing. But if you were in my shoes right now, what would be on your to do list and is it important enough to work on it today? Because I would give anything to be where you are right now, healthy and capable of accomplishing my "to do's."
While my mind was perusing the possibilities, I decided I would like to try to run a marathon when I am healthy again. I've been talking about it for years and now. And it was always one of the things on my to do list but I always found an excuse to put it off. Maybe because I know it's not going to be the easiest thing to do. But dream big, right? Once my body is cancer free what a better way to celebrate than run a marathon. Maybe the chemo is starting to affect my brain and this is all just crazy talk, I don't know. But what have YOU been putting off????
I hope none of you ever has to do what I am doing. But if you were in my shoes right now, what would be on your to do list and is it important enough to work on it today? Because I would give anything to be where you are right now, healthy and capable of accomplishing my "to do's."
Thursday, March 5, 2009
Thank God for All of You
Yesterday was my toughest day yet. I had a lot of problems with nausea and throwing up and didn't realize it was going to be that bad until it was too late to call the doctor. So I spent the entire day in bed. I wasn't even able to get to the computer to check the blog at all. But thankfully, today has been better. With some coaxing from my mom and Steve, I called the nurse first thing this morning and told her about yesterday. "Oh my God!" was her response so I realized I actually had been suffering needlessly. Dr. McNamara called back within an hour and called in a stronger prescription for the nausea. And luckily the new prescription worked. I have eaten a little bit today and I am gaining some strength back.
I read the responses from the last blog entry and I felt nothing but gratitude. I am so grateful that you are all praying for me and pulling for me. I would never admit this to Steve, but there have been a few times when I wondered if this was all worth it. But of course that is when I have been at my absolute weakest. And I can't tell you what it means to read the words of encouragement from you guys. Somehow, I don't feel quite so alone. Somehow, I feel a peace come over me and I know I can do this, if nothing else than for this moment.
Aunt Dene, you are an amazing person and you always know exactly what to say. The same goes for everyone who has posted a comment on any of the blog entries. I thank God everyday for all of you. For anyone who has commented on the blog, or sent me a personal email, or anyone who takes a moment during the day to say a prayer for me, I am overwhelmed with gratitude and I thank you.
I am not going to lie, chemotherapy sucks. And at the moment I am terrified that I have at least 3 - 5 more cycles to do. How can any one human being endure that?! But I know with the encouragement of all of you, I will somehow find a way. My love to you all.
I read the responses from the last blog entry and I felt nothing but gratitude. I am so grateful that you are all praying for me and pulling for me. I would never admit this to Steve, but there have been a few times when I wondered if this was all worth it. But of course that is when I have been at my absolute weakest. And I can't tell you what it means to read the words of encouragement from you guys. Somehow, I don't feel quite so alone. Somehow, I feel a peace come over me and I know I can do this, if nothing else than for this moment.
Aunt Dene, you are an amazing person and you always know exactly what to say. The same goes for everyone who has posted a comment on any of the blog entries. I thank God everyday for all of you. For anyone who has commented on the blog, or sent me a personal email, or anyone who takes a moment during the day to say a prayer for me, I am overwhelmed with gratitude and I thank you.
I am not going to lie, chemotherapy sucks. And at the moment I am terrified that I have at least 3 - 5 more cycles to do. How can any one human being endure that?! But I know with the encouragement of all of you, I will somehow find a way. My love to you all.
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