Today I was given the tentative schedule for my internal radiation treatments. There is nothing I am dreading more than these 5 days. I honestly don't have words to express how much I do not wish to acknowledge these 5 days, yet here they are...
#1/5 Friday September 21, 2012 07:00 am
#2/5 Friday September 28, 2012 11:30pm
#3/5 Tuesday October 2, 2012 07:30am
#4/5 Friday October 5, 2012 07:30am
#5/5 Tuesday October 9, 2012 07:30am
Now I am going to forget about them and not deal with them again for a few weeks (one day at a time with everything right now...). Also, I'm tired but still feeling pretty good. Too good. I am beginning to think they forgot to actually put the Chemo in my chemo this week...We'll see how tomorrow goes, but I am not complaining!
Friday, August 31, 2012
Holiday Weekends
It didn't really hit me until today that this weekend is Labor Day Weekend. I think it's a sad testament to how mentally consuming this process has been. (I won't tell you how I forgot about the mandatory preschool meeting this week or posted an assignment exactly a week late or give you any other clues about how cognitively impaired I currently am).
It wasn't until I realized there are no radiation treatments on Monday that I was able to really take note. Then it sunk in that Geoff doesn't work Monday either. Initially, I was really excited...then I got on Facebook. I realized everyone was going away to their cabins, or camping, or other fun family adventures.
It stung as I realized that we too had put an extensive amount of planning into our weekend, but not for the sake of fun. Our planning was centered around preparing for this week's chemo to hit. We had our house majorly cleaned today (thank you again wonderful aunts!!!). We made sure we are stocked up on all the essentials for everyone. We have a special bag packed for the kids in case we need some diversions/distractions.
It makes me sad to think how much I'd rather be able to take advantage of this opportunity to do something fun with my family and treasure every moment. You know, just in case...Then I tell myself, don't think like that. You will have a great Labor Day Weekend next year or hell, when you're done with treatment. You can make up your own special weekend. We'll get through this. We will find a way to make this weekend fun and special for us. Meanwhile we'll be thinking of you and hoping that you are finding ways to treasure every moment with your families and friends.
It wasn't until I realized there are no radiation treatments on Monday that I was able to really take note. Then it sunk in that Geoff doesn't work Monday either. Initially, I was really excited...then I got on Facebook. I realized everyone was going away to their cabins, or camping, or other fun family adventures.
It stung as I realized that we too had put an extensive amount of planning into our weekend, but not for the sake of fun. Our planning was centered around preparing for this week's chemo to hit. We had our house majorly cleaned today (thank you again wonderful aunts!!!). We made sure we are stocked up on all the essentials for everyone. We have a special bag packed for the kids in case we need some diversions/distractions.
It makes me sad to think how much I'd rather be able to take advantage of this opportunity to do something fun with my family and treasure every moment. You know, just in case...Then I tell myself, don't think like that. You will have a great Labor Day Weekend next year or hell, when you're done with treatment. You can make up your own special weekend. We'll get through this. We will find a way to make this weekend fun and special for us. Meanwhile we'll be thinking of you and hoping that you are finding ways to treasure every moment with your families and friends.
Thursday, August 30, 2012
C is for CSA Coincidence
Today was another good day. It was busy and I won't bore you with all the details, but I'm glad to say that I was able to do everything I needed to. I don't feel like I had chemo yesterday and I am thankful for that.
This evening we went to pick up our CSA (Community Supported Agriculture) share at the farm. E took off towards the goats as usual and was dismayed to discover that they were "in timeout" in the barn for escaping (again). He had a hard time believing the goats could do anything that would require them to not only be in timeout, but more importantly, be deprived of him feeding them. There were tears and a lot of "but why!?!?!?!"
Meanwhile Geoff and I were scoping out our veggies of the week with Ella. A woman I didn't recognize walked by and said something cute to her which then morphed into something about her being a 12 lb baby. Of course at this point, I took note. Then the lady turned to me and asked if I was still breastfeeding her. I was at a complete loss for words. I know my agony showed on my face and since I already gave it away I replied with an honest "no. I had to stop last week when I began chemo treatment."
The lady responded with an equally pained expression. Then she threw her arms around me. She launched into a tirade of "how unfair...you're too young...god bless your heart..." I'm not exactly sure what she said. I know there was a time when I would have backing away, but her reaction was genuine and raw and paralleled my internal feelings.
She was sincerely sweet and didn't interrogate us, but instead the conversation had a natural flow that led to her talking about Gilda's Club, a cancer support club in Madison for the whole family. We've heard about it (from our wonderful NP of course) and have been meaning to check it out because they have activities and groups aimed at little kiddos 4 and younger. She had heard wonderful things about the place too, but hadn't been there herself.
She initially heard about it from a gorgeous hospice home near Geoff's work. Apparently her mother was diagnosed early 2012 with stage 4 pancreatic cancer and died 2 months later. It all happened so fast and according to her, she is still having a hard time dealing with the grief, so it was recommended that she check out some of the support systems available at Gilda's Club.
I'm not sure exactly why I crossed paths with her today or even how the chain of events progressed from admiring and acknowledging my little love to bringing up the one thing that would make me reveal my dirty little secret. Obviously we have talked to her before, (Geoff remembers this, I do not) because she knew about Ella's giant birth status. I will however, remember her now. It's funny how these things work.
It's ironic that on the way to CSA I was telling Geoff that one of the things about cancer was I was able to see for the first time in my life all the different groups and associations that I belong to...my college friends, his college friends, my friends from my hometown, my neighbors, my work friends, my birthing world friends, my midwifery school friends, my parenting friends, my animal friends, and the list goes on and on...Cancer sucks but it makes certain aspects of your life are so transparent. It makes everyone realize that you aren't to be taken for granted and it definitely makes you realize not to take anyone or anything for granted. I will never look at life the same way as I did pre-cancer again. I am forever changed. The new me is more than happy to befriend a stranger with a common love for organic veggies and chubby babies who probably needs hugs just as much as me if not more.
This evening we went to pick up our CSA (Community Supported Agriculture) share at the farm. E took off towards the goats as usual and was dismayed to discover that they were "in timeout" in the barn for escaping (again). He had a hard time believing the goats could do anything that would require them to not only be in timeout, but more importantly, be deprived of him feeding them. There were tears and a lot of "but why!?!?!?!"
Meanwhile Geoff and I were scoping out our veggies of the week with Ella. A woman I didn't recognize walked by and said something cute to her which then morphed into something about her being a 12 lb baby. Of course at this point, I took note. Then the lady turned to me and asked if I was still breastfeeding her. I was at a complete loss for words. I know my agony showed on my face and since I already gave it away I replied with an honest "no. I had to stop last week when I began chemo treatment."
The lady responded with an equally pained expression. Then she threw her arms around me. She launched into a tirade of "how unfair...you're too young...god bless your heart..." I'm not exactly sure what she said. I know there was a time when I would have backing away, but her reaction was genuine and raw and paralleled my internal feelings.
She was sincerely sweet and didn't interrogate us, but instead the conversation had a natural flow that led to her talking about Gilda's Club, a cancer support club in Madison for the whole family. We've heard about it (from our wonderful NP of course) and have been meaning to check it out because they have activities and groups aimed at little kiddos 4 and younger. She had heard wonderful things about the place too, but hadn't been there herself.
She initially heard about it from a gorgeous hospice home near Geoff's work. Apparently her mother was diagnosed early 2012 with stage 4 pancreatic cancer and died 2 months later. It all happened so fast and according to her, she is still having a hard time dealing with the grief, so it was recommended that she check out some of the support systems available at Gilda's Club.
I'm not sure exactly why I crossed paths with her today or even how the chain of events progressed from admiring and acknowledging my little love to bringing up the one thing that would make me reveal my dirty little secret. Obviously we have talked to her before, (Geoff remembers this, I do not) because she knew about Ella's giant birth status. I will however, remember her now. It's funny how these things work.
It's ironic that on the way to CSA I was telling Geoff that one of the things about cancer was I was able to see for the first time in my life all the different groups and associations that I belong to...my college friends, his college friends, my friends from my hometown, my neighbors, my work friends, my birthing world friends, my midwifery school friends, my parenting friends, my animal friends, and the list goes on and on...Cancer sucks but it makes certain aspects of your life are so transparent. It makes everyone realize that you aren't to be taken for granted and it definitely makes you realize not to take anyone or anything for granted. I will never look at life the same way as I did pre-cancer again. I am forever changed. The new me is more than happy to befriend a stranger with a common love for organic veggies and chubby babies who probably needs hugs just as much as me if not more.
Wednesday, August 29, 2012
Address
Due to an overwhelming request via email and Facebook I have decided to just post our address here.
Gin and Geoff McAlister
1617 SkyRidge Ct.
Stoughton, WI 53589
Gin and Geoff McAlister
1617 SkyRidge Ct.
Stoughton, WI 53589
Chemo Day 2
So off I went to begin my usual routine. Today was my 6th radiation treatment which means that they do new films to recheck all their calibrations. It only took a few minutes longer so then I was off to my weekly appointment with my radiation oncologist.
The appointment was pretty uneventful. We talked about my nausea med choices and she decided to give me a different prescription since I've been hesitant to take the meds that I currently have. That was about it.
Then I went to have my port accessed and get lab draws. This went well too, other than the fact that my skin around my port is red, scaly and very irritated. Everyone is hesitant to touch it because it looks so "angry," but it wasn't too bad.
Geoff met up with me outside the cancer clinic lab and we headed to the chemo treatment area. I checked in and then went to the bathroom. When I came back Geoff had a strange look on my face and muttered something about "you aren't going to be very happy." I figured it couldn't be too bad...I'll admit I was surprised to find that there was a mix-up and no one ever scheduled my chemo for today. I headed back up to the desk to figure out what I was supposed to do. I mentioned that I had just met with my radiation oncologist 15 minutes ago and when I mentioned the name I was told not to worry about it, they would take care of it.
A few minutes later the receptionist/HUC came over to tell me that was getting it all worked out and that she was scheduling all the rest of my chemo appointments so this wouldn't happen again. It seemed like no big deal, but we had no idea that we would literally watch every single person in the crowded waiting room get called back in addition to a couple more not present once the waiting room emptied out over the course of the next 3+ hours.
I slept poorly last night and my neck was killing me. I kept telling myself how ridiculous I was being. I had consciously chosen to skip Ibuprofen this morning because I figured I'd be getting my chemo treatment soon after leaving home and knew the combinations of anti nausea meds would knock me out. I had not planned on sitting in a waiting room chair for hours and it didn't take long for me to get pretty cranky and uncomfortable. Geoff wasn't anymore thrilled with our circumstances so our conversations quickly spiraled downhill to harmless, self-entertaining inappropriateness. We sat in our corner and giggled and passed the time away until it really was our turn with a couple of accidental (well, the initial one anyway) visits from our superhero NP.
 |
| It's cheesy, but at least I look happy |
By the time I was about halfway home I actually felt better than when I had gone in this morning. I'm guessing I had needed some fluids. I had planned to go home and sleep but after we got home I was feeling well enough that I went with Geoff to pick up the kids. Then we had a lovely dinner with/by a friend. It was a great evening and I felt silly having a friend bring us dinner because I was feeling so well.
Tonight really was a gift. I am very appreciative of the time I got to spend with my family, friend and even neighbors, tonight. I was told multiple times today that I look great and I felt like it too. I'm pretty sure I am kicking cancer's butt. I know the bad days will be back soon enough, but I'm glad I got today. I really feel like I can say I'm 1/3 of the way done and next week I'll be halfway there (not including internal radiation).
The real icing on the cake was this was the third night in a row that our determined little man decided he would go potty before bed. This is really thanks to a very wise aunt of mine who suggested "a treasure box" of bribes...I won't deny that I was skeptical at first...E doesn't do anything unless it is his idea and his time. I decided match box cars are cheap and fun so I started buying them and putting them in a box. I told E about the box and showed him the box. Soon he started talking about the box and which cars he was going to pick first. I still didn't think it would work but I am pleasantly pleased. He gets up in the morning and starts chattering away about all of it too and tonight when he came home from daycare he wanted to sit on the potty before anything else. I'm going to hope that we are about 1/3 of the way there with potty training too and if we just keep up the consistency we'll soon find ourselves done with diapers (well, half of them anyway) and cancer.
Monday, August 27, 2012
At a loss for words...
Most nights I have an idea what I want to write about, but not so much tonight. It's not that I don't have anything to say or that I don't have anything on my mind...If anything it's the opposite. I have too many thoughts.
I'm not looking forward to chemo tomorrow. I can deal with radiation. Tomorrow will mark a full week of going to daily radiation and it seems like it has become routine. I know the people I will see, and they know enough about to me to have a semi-personal conversation. They know how old my kids are. They know where I work and what I do. They know I'm currently not working because of all of this. They know I'm in midwifery school. Radiation treatments are quick, and dare I see, almost comfortable.
Chemo on the other hand, sucks. I get to have Geoff with me, but that's about it. I know that I am going to have to have my port accessed which eventually will be fine, but it is still really sore. I'm allergic to the dressings they used so my skin is broken out and even blistered in some areas. The areas around the port are bruised and yellow. Even though I know it's barely a prick, the idea that someone will touch my port site and put a dressing on it makes me cringe.
Then, I know that I will get a minimum of 2 and half liters of IV fluids over a few short hours. Let me just say, that I am sorry to all of my patients that I have ever done this to, because it sucks. To make matters worse, I have to take 3 types of anti-nausea meds all which knock me out cold. The whole being tired and sleeping thing isn't so bad except when you are completely groggy and you have to go to the bathroom like never before and you are attached to an IV and have to maneuver down the hall to the bathroom. Oh and don't forget, they have to measure my urine to know that I am actually urinating enough. If I don't, then I have to have Lasix (a drug that helps you shed the excessive fluids).
It sounds like I'm complaining and probably I am, but that's not my intention. It's just that a week ago I felt completely fine. I knew I had cancer, but I didn't feel it. Now I know that I'm going to feel it again tomorrow and the rest of this week. There is still some unknown to each treatment, but after last week I have an idea how I'm going to feel. No one likes feeling like crap and I know that's exactly where I'm headed.
That's one of the most difficult things for me to process. One day I feel fine and the next I don't. One day I can do whatever I want and the next I feel like I'm a 90 year old in a 35 year old body. I know that eventually I will feel better. I mean that's why I'm doing all this, right? but it's hard to just ignore how crummy all this makes me feel.
I guess I just have to keep telling myself that after tomorrow I will have 2 chemo days down and 4 to go, and remind myself that this will be over in no time. (and try to not think about the fact that I have no idea what is going to happen next...argh!)
I'm not looking forward to chemo tomorrow. I can deal with radiation. Tomorrow will mark a full week of going to daily radiation and it seems like it has become routine. I know the people I will see, and they know enough about to me to have a semi-personal conversation. They know how old my kids are. They know where I work and what I do. They know I'm currently not working because of all of this. They know I'm in midwifery school. Radiation treatments are quick, and dare I see, almost comfortable.
Chemo on the other hand, sucks. I get to have Geoff with me, but that's about it. I know that I am going to have to have my port accessed which eventually will be fine, but it is still really sore. I'm allergic to the dressings they used so my skin is broken out and even blistered in some areas. The areas around the port are bruised and yellow. Even though I know it's barely a prick, the idea that someone will touch my port site and put a dressing on it makes me cringe.
Then, I know that I will get a minimum of 2 and half liters of IV fluids over a few short hours. Let me just say, that I am sorry to all of my patients that I have ever done this to, because it sucks. To make matters worse, I have to take 3 types of anti-nausea meds all which knock me out cold. The whole being tired and sleeping thing isn't so bad except when you are completely groggy and you have to go to the bathroom like never before and you are attached to an IV and have to maneuver down the hall to the bathroom. Oh and don't forget, they have to measure my urine to know that I am actually urinating enough. If I don't, then I have to have Lasix (a drug that helps you shed the excessive fluids).
It sounds like I'm complaining and probably I am, but that's not my intention. It's just that a week ago I felt completely fine. I knew I had cancer, but I didn't feel it. Now I know that I'm going to feel it again tomorrow and the rest of this week. There is still some unknown to each treatment, but after last week I have an idea how I'm going to feel. No one likes feeling like crap and I know that's exactly where I'm headed.
That's one of the most difficult things for me to process. One day I feel fine and the next I don't. One day I can do whatever I want and the next I feel like I'm a 90 year old in a 35 year old body. I know that eventually I will feel better. I mean that's why I'm doing all this, right? but it's hard to just ignore how crummy all this makes me feel.
I guess I just have to keep telling myself that after tomorrow I will have 2 chemo days down and 4 to go, and remind myself that this will be over in no time. (and try to not think about the fact that I have no idea what is going to happen next...argh!)
A quick clarification...
I keep thinking about what I wrote last night in regards to the Kid's Miracle Network. I want to be clear....I am very happy there are charities like this. I hope my family never has a need for them. I support them and our local children's hospital...
I was frustrated because the phone call brought awareness to my own inability to provide the world to my kids right now. It was another reminder of my illness, my mortality, and the inescapable effects all this has on my family.
I'm stuck trying to decide how to balance explaining what's going on to E versus not burdening his youthful soul.
I'm not always the most articulate and I've spent the morning worrying that what I wrote last night came across as inconsiderate and selfish. That was never my intention...I was merely thinking of my kids, my cancer, my inadequacies.
I was frustrated because the phone call brought awareness to my own inability to provide the world to my kids right now. It was another reminder of my illness, my mortality, and the inescapable effects all this has on my family.
I'm stuck trying to decide how to balance explaining what's going on to E versus not burdening his youthful soul.
I'm not always the most articulate and I've spent the morning worrying that what I wrote last night came across as inconsiderate and selfish. That was never my intention...I was merely thinking of my kids, my cancer, my inadequacies.
Sunday, August 26, 2012
The best and the worse of it all...
Today was definitely better. The early morning resembled yesterday (nausea and fatigue), but to a much lesser degree. I napped and took it easy and by mid afternoon, I felt like I could go outside with the kiddos. By the end of the day, I felt like I could almost be with my family in a way reminiscent of a week ago (pre-cancer treatment).
Ephraim is feeling much better and off antibiotics. He has resumed his life-long goal to climb everything and has decided this weekend that should include mastering climbing trees. He has also decided to add stunts to his bike riding repertoire and possibly scariest of all, he has discovered Calvin and Hobbes (thanks again, mom...NOT really!!!) I can only imagine what this will lead to...
Ella is also doing great and is every bit as adventurous. She is walking, talking, going up and down stairs and there is no stopping her when she has mind set on something. She wants to be in the middle of everything and the only way to slow her down is turn on music and hope it distracts her long enough for a quick dance.
This weekend someone asked me what the best and the worse of all of this has been. The best was easy for me to answer...Obviously all the family and friends. We feel so loved and supported. It seems that everywhere we go people tell us they have been praying for us, or they have been thinking of us, or they want to help.
I've said it before and I'll say it again, the outpouring of support is overwhelming. All the prayers, words of encouragement, meal support, cards, babysitting offers, doggy daycare days, etc. are making it possible for us to focus on each other and just take it one day at a time.
I don't know what we would do without all of you, really...
As far as what is the worst? Well, that's pretty easy too. It's the unknown, of course. Will the current treatment plan be enough? Will I have another clean PET scan, but not MRI? What happens then? or What if they both come back clean? We've talked about being aggressive with this, what does that mean?
There are so many life-changing events that have happened in the past month and 3 days. Some of them we have processed, many we are still processing. Many just create more questions for us. The biggest questions are of course, how ugly is this going to get? Will I really make it? How are the kids going to be affected? Are we going to run out of support before the damn cancer dies? and after this weekend, if the chemo is supposed to kill the cancer, what makes me think I will be able to outlast the chemo?
On Friday I got a phone call from the Kid's Miracle Network. They were asking me to donate money to sick and terminally ill kids so they could have trips and special memories with their families. I was at a loss for words. I want to help those kids, but what about my kids? I have a good prognosis, but my kids don't understand all that is going on. Already E talks about me going to the doctor all the time. He asks if I'm ok. If my owie (my port) is getting better. He tells me "it's ok mama...don't worry" or "you come get me from school (aka daycare) after you are done at the doctor?"
I feel bad and I worry about him all the time. Don't get me wrong, I know my kiddos are resilient. Really they are. It's just that I don't want my kids to feel the weight of issues that are beyond their time. E should be worrying about which trees to climb, not how sick his mommy is today.
That phone call was frustrating to me. I was mad (not at the cause, I promise). I realized that I want to be able to take my kids to Disney World someday (this is ironic b/c neither Geoff or I have ever cared that much about going to Disney). I want my kids to have the "Disney" experience and I want it to be with me. I want E to smile from Mickey Mouse ear to Mickey Mouse ear and be carefree.
Then Saturday happened. I was miserable. I felt horrible and it was reflected in my energy and my attitude. I tried to put on a good front for E, but I know he saw through it. Geoff and I were frustrated with each other because neither of us knew how to handle such a crummy day either. E saw this too.
This is the worst of it all.
Today as I felt better Geoff and I were able to reevaluate. We were able to use some of what was previously unknown and prepare for how to handle this upcoming week. We both realized that the best thing we can do for all of us is to use the best (i.e. all the support) to minimize the worse (i.e. the unknown) and create as much stability in household as possible...for now.
Ephraim is feeling much better and off antibiotics. He has resumed his life-long goal to climb everything and has decided this weekend that should include mastering climbing trees. He has also decided to add stunts to his bike riding repertoire and possibly scariest of all, he has discovered Calvin and Hobbes (thanks again, mom...NOT really!!!) I can only imagine what this will lead to...
This weekend someone asked me what the best and the worse of all of this has been. The best was easy for me to answer...Obviously all the family and friends. We feel so loved and supported. It seems that everywhere we go people tell us they have been praying for us, or they have been thinking of us, or they want to help.
I've said it before and I'll say it again, the outpouring of support is overwhelming. All the prayers, words of encouragement, meal support, cards, babysitting offers, doggy daycare days, etc. are making it possible for us to focus on each other and just take it one day at a time.
I don't know what we would do without all of you, really...
As far as what is the worst? Well, that's pretty easy too. It's the unknown, of course. Will the current treatment plan be enough? Will I have another clean PET scan, but not MRI? What happens then? or What if they both come back clean? We've talked about being aggressive with this, what does that mean?
There are so many life-changing events that have happened in the past month and 3 days. Some of them we have processed, many we are still processing. Many just create more questions for us. The biggest questions are of course, how ugly is this going to get? Will I really make it? How are the kids going to be affected? Are we going to run out of support before the damn cancer dies? and after this weekend, if the chemo is supposed to kill the cancer, what makes me think I will be able to outlast the chemo?
On Friday I got a phone call from the Kid's Miracle Network. They were asking me to donate money to sick and terminally ill kids so they could have trips and special memories with their families. I was at a loss for words. I want to help those kids, but what about my kids? I have a good prognosis, but my kids don't understand all that is going on. Already E talks about me going to the doctor all the time. He asks if I'm ok. If my owie (my port) is getting better. He tells me "it's ok mama...don't worry" or "you come get me from school (aka daycare) after you are done at the doctor?"
I feel bad and I worry about him all the time. Don't get me wrong, I know my kiddos are resilient. Really they are. It's just that I don't want my kids to feel the weight of issues that are beyond their time. E should be worrying about which trees to climb, not how sick his mommy is today.
That phone call was frustrating to me. I was mad (not at the cause, I promise). I realized that I want to be able to take my kids to Disney World someday (this is ironic b/c neither Geoff or I have ever cared that much about going to Disney). I want my kids to have the "Disney" experience and I want it to be with me. I want E to smile from Mickey Mouse ear to Mickey Mouse ear and be carefree.
Then Saturday happened. I was miserable. I felt horrible and it was reflected in my energy and my attitude. I tried to put on a good front for E, but I know he saw through it. Geoff and I were frustrated with each other because neither of us knew how to handle such a crummy day either. E saw this too.
This is the worst of it all.
Today as I felt better Geoff and I were able to reevaluate. We were able to use some of what was previously unknown and prepare for how to handle this upcoming week. We both realized that the best thing we can do for all of us is to use the best (i.e. all the support) to minimize the worse (i.e. the unknown) and create as much stability in household as possible...for now.
Saturday, August 25, 2012
Caregiver strain
I'm not going to sugar coat this post. Today sucked.
I felt miserable all day. It started with some nausea and feeling more tired than usual. Overall the nausea is a lot like pregnancy nausea which is something that I absolutely despise but I think I can handle. Initially I thought the same of the fatigue...
Eventually I changed my mind. Mentally I have things I wanted to do...craft projects, reading books, watching movies, sitting on the floor and playing with the kiddos, but I couldn't. I could not stay awake. I didn't take any meds and I still couldn't stay awake.
I slept for a few hours and then tried to be with Geoff and the kids but it was a chore. I was never completely comfortable and I just felt "blah!"
To make matters worse all of this is overwhelming Geoff. He wants to fix all of it for me, but can't. My first officially crummy day and I've already stressed out my primary caregiver. I just want to make this better for him and the kids.
On that note I'm going to keep this short and go to sleep. Tomorrow will be better :).
I felt miserable all day. It started with some nausea and feeling more tired than usual. Overall the nausea is a lot like pregnancy nausea which is something that I absolutely despise but I think I can handle. Initially I thought the same of the fatigue...
Eventually I changed my mind. Mentally I have things I wanted to do...craft projects, reading books, watching movies, sitting on the floor and playing with the kiddos, but I couldn't. I could not stay awake. I didn't take any meds and I still couldn't stay awake.
I slept for a few hours and then tried to be with Geoff and the kids but it was a chore. I was never completely comfortable and I just felt "blah!"
To make matters worse all of this is overwhelming Geoff. He wants to fix all of it for me, but can't. My first officially crummy day and I've already stressed out my primary caregiver. I just want to make this better for him and the kids.
On that note I'm going to keep this short and go to sleep. Tomorrow will be better :).
C is for Caregiver
So tonight is going to be a little different. This is not Gin, this is Geoff. Gin is passed out cold (good for her), and I agreed to get something posted for her tonight. The plan always was for me to periodically write some posts, and tonight is as good as any night for my first guest appearance. I will warn you that this will be short, because not only is Gin asleep, but Ella and E are also asleep, so I am missing out quality sleep time myself.
It can be challenging to care for someone who is a professional caregiver. There is an old joke that teachers make the worst students, and based on several years of continuing education classes back in my teaching days, I would say there is some truth to that. I don't know for sure if such a thing exists, but I would be willing to bet there is some sort of saying along the lines of nurses make the worst patients. A little Googling reveals this is indeed the case:
**(see below)
I am going to take just a minute here for a brief interlude in this brief post to speculate what this saying would be for other service-oriented jobs. I know from experience that bike mechanics are supposed to take the worst care of their own bikes, so do pumbers take the worst care of their own plumbing? Feel free to let me know other classics that you have heard.
So you can probably guess where this is going, "Geoff, give us some juicy gossip about how frustrating Gin is as a patient." Well, the problem is, I don't really have any gossip. Gin has been an amazing patient. She has been great about getting to all of her appointments, she is a great self-advocate, and she takes decisive action when needed. If I sound a litte ra-ra cheerleader about my wife, that's because I am. She has been amazing.
We just finished the first week of treatment. Overall, it really has gone quite well, but I won't lie - it hasn't been all sunshine and rainbows. Her port is bothering her, particularly since it is in the spot where the kids and I seem to bump into her the most. She is more nauseous and tired than she lets on - particularly this morning. I don't mean to alarm anyone - she is still doing mostly well overall. The reason I bring it up is because if you saw her on the street, there is still a very, very good chance you would not know anything is wrong.
I feel fortunate things have gone so well so far. I know Gin has said this multiple times, but I need to say it as well - we feel so fortunate to have such great friends and family and for all the support we have received so far. You are all caregivers as well, and thank you for that.
**At around this time, the computer i was working on decided to have technical diffidculties and ultimately I decided to give up and go to sleep myself. I finished the post the next day. Sorry for the delay.
It can be challenging to care for someone who is a professional caregiver. There is an old joke that teachers make the worst students, and based on several years of continuing education classes back in my teaching days, I would say there is some truth to that. I don't know for sure if such a thing exists, but I would be willing to bet there is some sort of saying along the lines of nurses make the worst patients. A little Googling reveals this is indeed the case:
**(see below)
I am going to take just a minute here for a brief interlude in this brief post to speculate what this saying would be for other service-oriented jobs. I know from experience that bike mechanics are supposed to take the worst care of their own bikes, so do pumbers take the worst care of their own plumbing? Feel free to let me know other classics that you have heard.
So you can probably guess where this is going, "Geoff, give us some juicy gossip about how frustrating Gin is as a patient." Well, the problem is, I don't really have any gossip. Gin has been an amazing patient. She has been great about getting to all of her appointments, she is a great self-advocate, and she takes decisive action when needed. If I sound a litte ra-ra cheerleader about my wife, that's because I am. She has been amazing.
We just finished the first week of treatment. Overall, it really has gone quite well, but I won't lie - it hasn't been all sunshine and rainbows. Her port is bothering her, particularly since it is in the spot where the kids and I seem to bump into her the most. She is more nauseous and tired than she lets on - particularly this morning. I don't mean to alarm anyone - she is still doing mostly well overall. The reason I bring it up is because if you saw her on the street, there is still a very, very good chance you would not know anything is wrong.
I feel fortunate things have gone so well so far. I know Gin has said this multiple times, but I need to say it as well - we feel so fortunate to have such great friends and family and for all the support we have received so far. You are all caregivers as well, and thank you for that.
**At around this time, the computer i was working on decided to have technical diffidculties and ultimately I decided to give up and go to sleep myself. I finished the post the next day. Sorry for the delay.
One week down...
I'm pretty excited as I write this post and think I have successfully finished my first week of treatment. I'm even more excited that I don't have to be up at 5 or 6 am tomorrow to get to the hospital.
Overall I think I'm doing pretty well, but I am definitely tired. Last night I was too tired to stay up and write a post, and I've slept a good portion of today. I'm pretty sure I have mentioned that I was warned ahead of time that Fridays/Saturdays will most likely be my hard days...when the chemo nausea really hits.
It did. I actually woke up at 3:45 am feeling miserable. I got up went to the bathroom, brushed my teeth, washed my face and then crawled back into bed until about 6:15. This left me about 15 minutes to get ready and leave for my radiation appointment this morning.
Yesterday, one of the motors in the machine malfunctioned as I was getting treatment. In other words, the machine couldn't telescope in properly for my treatment so I had to go out to the waiting room and wait for someone to come and fix the machine. I only had two of three zaps to my right hip left to be done, but it took about 45 minutes to get the machine fixed.
Today there were no malfunctions. Everything went smoothly. I was in and out in about 5 minutes. I was done and waiting for the valet to bring my car around by 7:30. It was weird. As I waiting for my car I sat on a bench that I used to sit on all the time waiting to be picked up from work (um, I was chauffeured to work a lot by my wonderful husband). I watched familiar faces walk out of the hospital ready to go home and go to sleep including some of my old co-workers and friends.
I ended up talking with some of them for quite awhile. It was wonderful to see them and to be able to talk face to face and to physically hug them. They have all been following along with this saga and my big regret is that I didn't get to hear more about what was going on with each of them. I miss them and I miss the interaction with them.
It's odd to talk with them from the perspective of being a patient. They understand things I talk about this process in a way most of the people in my life wouldn't...like the staffing ratios of the chemo nurses or how ridiculous it is to try to get from one place to the next in the hospital or why I might want to avoid taking certain meds...but it's weird as I talk because I feel like I'm trying balance being a nurse and a patient and I don't really know where I stand at any given moment right now. I guess if I had to pick I would lean towards the patient side, but I don't like picking that side. It makes me feel vulnerable (which I am), it makes me realize I have no control (which really I don't), and it makes me feel like I don't know enough (which I definitely don't).
Eventually I headed back home. My parents were here to help out yesterday and today and thanks to them I was able to get a few errands done and sleep most of the day. I'm still pretty tired but I am pleased that I didn't have to take any nausea medication. I was also able to enjoy the wonderful pizza dinner given to us by one of my former co-workers.
I can't say enough how about grateful I am to all of our friends and family for supporting us right now. Thanks to everyone we have made it through week 1...We are well fed, have a clean house, have happy kids and puppies and this weekend we are looking forward to just enjoying being together as a family. Thank you!
Overall I think I'm doing pretty well, but I am definitely tired. Last night I was too tired to stay up and write a post, and I've slept a good portion of today. I'm pretty sure I have mentioned that I was warned ahead of time that Fridays/Saturdays will most likely be my hard days...when the chemo nausea really hits.
It did. I actually woke up at 3:45 am feeling miserable. I got up went to the bathroom, brushed my teeth, washed my face and then crawled back into bed until about 6:15. This left me about 15 minutes to get ready and leave for my radiation appointment this morning.
Yesterday, one of the motors in the machine malfunctioned as I was getting treatment. In other words, the machine couldn't telescope in properly for my treatment so I had to go out to the waiting room and wait for someone to come and fix the machine. I only had two of three zaps to my right hip left to be done, but it took about 45 minutes to get the machine fixed.
Today there were no malfunctions. Everything went smoothly. I was in and out in about 5 minutes. I was done and waiting for the valet to bring my car around by 7:30. It was weird. As I waiting for my car I sat on a bench that I used to sit on all the time waiting to be picked up from work (um, I was chauffeured to work a lot by my wonderful husband). I watched familiar faces walk out of the hospital ready to go home and go to sleep including some of my old co-workers and friends.
I ended up talking with some of them for quite awhile. It was wonderful to see them and to be able to talk face to face and to physically hug them. They have all been following along with this saga and my big regret is that I didn't get to hear more about what was going on with each of them. I miss them and I miss the interaction with them.
It's odd to talk with them from the perspective of being a patient. They understand things I talk about this process in a way most of the people in my life wouldn't...like the staffing ratios of the chemo nurses or how ridiculous it is to try to get from one place to the next in the hospital or why I might want to avoid taking certain meds...but it's weird as I talk because I feel like I'm trying balance being a nurse and a patient and I don't really know where I stand at any given moment right now. I guess if I had to pick I would lean towards the patient side, but I don't like picking that side. It makes me feel vulnerable (which I am), it makes me realize I have no control (which really I don't), and it makes me feel like I don't know enough (which I definitely don't).
Eventually I headed back home. My parents were here to help out yesterday and today and thanks to them I was able to get a few errands done and sleep most of the day. I'm still pretty tired but I am pleased that I didn't have to take any nausea medication. I was also able to enjoy the wonderful pizza dinner given to us by one of my former co-workers.
I can't say enough how about grateful I am to all of our friends and family for supporting us right now. Thanks to everyone we have made it through week 1...We are well fed, have a clean house, have happy kids and puppies and this weekend we are looking forward to just enjoying being together as a family. Thank you!
Thursday, August 23, 2012
Radiation Day 2
Day 2 went fine. Nothing particularly exciting happened. It really did only take about 5 minutes once I was positioned and then I went about my day. On the way home from the hospital I met up with Geoff to trade off the kiddos. I met him at his work parking lot. From there we stopped to see Aggie, our horse, and then picked up the food that was our dinner from last night which turned into a yummy lunch (with lots of leftovers for the weekend).
The day itself turned out to be pretty busy.
Overall the morning was extremely frustrating. Ella was inconsolable and only wanted to nurse. E was exhausted and only wanted to lay around and watch tv. What made it exceptionally tricky is that to calm Ella down I needed to be able to carry her or walk her in the stroller, but I'm not supposed to be lifting more than 10 lbs with my right (dominant) arm right now (just for a few more days but I have to let my port incision heal).
I'm not going to say that I haven't picked up the kids b/c I have, but I have been able to basically stick to picking them up with my left side. I can't carry Ella around the way she wants doing this and I couldn't convince E to leave the house so we could do a stroller walk.
In the end Geoff took an extended lunch and came home to help me out. I discovered this morning that Ella likes kefir (sort of like really nutritious yogurt smoothie) so that was our trick of the day.
Both kids slept a few hours for me which allowed me some study time.
Then I had a friend come over who was gracious enough to bring yummy food and to offer what I would consider to be the most generous and thoughtful gift anyone could offer right now...She graciously proposed sanity in the form of offering to nurse Ella for me to see if that would help. I can't imagine how hard it was for her to approach such a delicate subject and I can't imagine what some of you might be thinking, but I think it was completely selfless and beautiful.
Ella on the other hand, did not think this was necessary. I'm not sure if I am surprised or not, but it was what it was. I'm still eternally grateful for my friend for trying to give Ella the one thing that I can't.
My friend visited with us for a bit and then left just after E got up from his nap so her little boy wouldn't be exposed to all of E's crud. A few minutes later, Geoff came home and we left for our farm to pick up our CSA (community supported agriculture) share.
Post farm visit I did more homework, talked with another close friend, took a test and basically got caught up to where I need to be for school. The kiddos stayed up too late because of my test and were up when another friend (a previous co-worker) showed up with food for tomorrow.
It was nice to have some time to chat with her until E (well, both) started to make it apparent that they needed to go to bed NOW.
Then I stayed up and did some more homework, wrote this quick and I'm off to get a few hours of sleep before radiation day 3. As I write this Ella rolled over and is snuggled up to me. I knew she was resilient, but I had no idea she would be this strong (sorry I doubted you kiddo), this soon. I'm happy that she was able to recover so quickly (for now anyway) and at least for now I can have some normalcy.
The day itself turned out to be pretty busy.
Overall the morning was extremely frustrating. Ella was inconsolable and only wanted to nurse. E was exhausted and only wanted to lay around and watch tv. What made it exceptionally tricky is that to calm Ella down I needed to be able to carry her or walk her in the stroller, but I'm not supposed to be lifting more than 10 lbs with my right (dominant) arm right now (just for a few more days but I have to let my port incision heal).
 |
| Esther doing her share to participate by chewing up an entire roll of toilet paper. |
I'm not going to say that I haven't picked up the kids b/c I have, but I have been able to basically stick to picking them up with my left side. I can't carry Ella around the way she wants doing this and I couldn't convince E to leave the house so we could do a stroller walk.
In the end Geoff took an extended lunch and came home to help me out. I discovered this morning that Ella likes kefir (sort of like really nutritious yogurt smoothie) so that was our trick of the day.
Both kids slept a few hours for me which allowed me some study time.
Then I had a friend come over who was gracious enough to bring yummy food and to offer what I would consider to be the most generous and thoughtful gift anyone could offer right now...She graciously proposed sanity in the form of offering to nurse Ella for me to see if that would help. I can't imagine how hard it was for her to approach such a delicate subject and I can't imagine what some of you might be thinking, but I think it was completely selfless and beautiful.
Ella on the other hand, did not think this was necessary. I'm not sure if I am surprised or not, but it was what it was. I'm still eternally grateful for my friend for trying to give Ella the one thing that I can't.
My friend visited with us for a bit and then left just after E got up from his nap so her little boy wouldn't be exposed to all of E's crud. A few minutes later, Geoff came home and we left for our farm to pick up our CSA (community supported agriculture) share.
Post farm visit I did more homework, talked with another close friend, took a test and basically got caught up to where I need to be for school. The kiddos stayed up too late because of my test and were up when another friend (a previous co-worker) showed up with food for tomorrow.
It was nice to have some time to chat with her until E (well, both) started to make it apparent that they needed to go to bed NOW.
Then I stayed up and did some more homework, wrote this quick and I'm off to get a few hours of sleep before radiation day 3. As I write this Ella rolled over and is snuggled up to me. I knew she was resilient, but I had no idea she would be this strong (sorry I doubted you kiddo), this soon. I'm happy that she was able to recover so quickly (for now anyway) and at least for now I can have some normalcy.
Wednesday, August 22, 2012
Meals...
I decided to repost this here. I was supposed to email it to everyone I knew but that seemed ridiculous so I originally put it on Facebook...I've decided that making a post specifically for it may make it easier for people to find it, to sign up, and therefore, make our lives significantly easier!!!
http://www.signupgenius.com/go/4090948A9A62DA57-mcalister
http://www.signupgenius.com/go/4090948A9A62DA57-mcalister
Juxtaposition
Today was a day of physical and emotional juxtaposition. Since I'm tired and don't totally feel like reliving it right now, I decided I would make the day into a list of the top 10 good things and the top 10 bad things. You can decide what you think about my glass being half empty or half full for yourself.
Top 10 Good (not in any particular order):
1. The book mentioned yesterday is hilarious
2. I found out I get a TWO week break from pelvic exams (yay! seriously, I never expected I would have to be excited about this)
3. I got to have a day off with just Geoff
4. We were done at the hospital by noon
5. Both of the kiddos were extra cuddly tonight and the dogs were exhausted
6. Radiation treatments themselves are fine (note: this statement does not mention anything about potential side effects)...AND I didn't have to have Lasix with my chemo
7. More mail and more care packages make us feel ridiculously loved
8. I started the process of killing my cancer!!!
9. I survived today with overall positive/happy attitude
10. I realized that if my mass is about 5 cm at it's largest dimension which corresponds roughly to a 9 week fetus. From this I decided I could rationalize this as an explanation for the few people that have asked me if I'm pregnant (probably not, but don't tell me otherwise)...AND that maybe killing this mass will help kill the chronic postpartum (sometimes pregnant) look I think I have
Top 10 Bad (no particular order):
1. This morning was the last time I may ever breastfeed Ella. (well, to be even more specific, it may have been my last time breastfeeding period)
2. We started the day by forgetting E's shoes so Geoff had to drop me off at the hospital, drive home to get the shoes, drop the dogs off, drop the kids off, and then come back to the hospital...He arrived just after I got checked in for my chemo treatment
3. When taking the dressing off my port to put numbing cream on the incision, the steri-strips pulled away and part of my incision popped open. This started a small blood bath that headed directly for my white shirt (I know I kind of deserved it wearing white and all). Thank goodness however, that I had a stash of tegaderm to slap over it and reinforce it with. Then I quickly headed to chemo so they could clean up the mess (they have all the sterile supplies, I didn't)
4. The anti-nausea meds that I have with my chemo treatments knock me out cold. I am officially a lightweight. I slept through most of my treatment and much of the afternoon. (This is actually not totally bad...They were great naps, but Geoff had brought games and stuff to do and I was looking forward to this time with him).
5. I won't have the same chemo nurse next week because she has next Tuesday off (but all the other chemo nurses we met seemed great too)
6. Despite the anti-nausea meds I still had some lingering nausea. It wasn't too bad, but it wasn't so great either.
7. Our scheduled dinner never showed up. (I'm sure there was a good reason)
8. It's 12:30 am and I have to be back at the hospital by 7:15 am for today's radiation treatment.
9. I didn't have to have lasix because I was able to meet my "output goal" within maybe 5 minutes of starting the actual chemo treatment (this was the good part...the bad part is the next sentence). I continued to meet this "output goal" many more times over the next few hours
10. We picked E from daycare and headed straight to urgent care. He has been sick for a few weeks now and he seems to be getting worse rather than better. Early last week our pediatrician diagnosed him with hand, foot, and mouth disease (really a virus). On the way home from Iowa on the weekend we made a stop and I looked in his mouth to see what looked a lot like strep to me. In addition he is coughing until he throws up. Argh! Anyway, consensus was yes, hand, foot, and mouth disease, a right ear infection, probable strep, and probable whooping cough. WTH? Poor kid...We were offered diagnostic tests for the strep and whooping cough but we decided to forgo torturing him since we knew when we went to urgent care were headed for antibiotics anyway (that's how it works...urgent care=antibiotics...always). He also had a dose of oral steroids-which I give full credit for him eating dinner tonight. I feel terrible for the kid and I feel even worse because I knew he wasn't feeling well but he was sitting right at that cusp of should we do more or give him more time...Hindsight may be 20/20 but I feel crappy that we didn't revisit our pediatrician or push the issue more
Juxtaposition Bonus:
I found out that just one of my 4 home anti-nausea meds costs $100/pill (we did not inquire as to cost of the others). Thank god we now have a plan with a "higher" deductible (I say it this way b/c we have a flex plan that covers this deductible. In all honesty, it took less a month of all of this to meet that deductible) so we paid nothing. I feel really crappy for the people with 80/20 plans or other crummy insurance (or no insurance for that matter).
Top 10 Good (not in any particular order):
 |
| "The Chemo" |
1. The book mentioned yesterday is hilarious
2. I found out I get a TWO week break from pelvic exams (yay! seriously, I never expected I would have to be excited about this)
3. I got to have a day off with just Geoff
4. We were done at the hospital by noon
5. Both of the kiddos were extra cuddly tonight and the dogs were exhausted
6. Radiation treatments themselves are fine (note: this statement does not mention anything about potential side effects)...AND I didn't have to have Lasix with my chemo
7. More mail and more care packages make us feel ridiculously loved
8. I started the process of killing my cancer!!!
9. I survived today with overall positive/happy attitude
10. I realized that if my mass is about 5 cm at it's largest dimension which corresponds roughly to a 9 week fetus. From this I decided I could rationalize this as an explanation for the few people that have asked me if I'm pregnant (probably not, but don't tell me otherwise)...AND that maybe killing this mass will help kill the chronic postpartum (sometimes pregnant) look I think I have
Top 10 Bad (no particular order):
1. This morning was the last time I may ever breastfeed Ella. (well, to be even more specific, it may have been my last time breastfeeding period)
2. We started the day by forgetting E's shoes so Geoff had to drop me off at the hospital, drive home to get the shoes, drop the dogs off, drop the kids off, and then come back to the hospital...He arrived just after I got checked in for my chemo treatment
 |
| Right before I left for the hospital. |
4. The anti-nausea meds that I have with my chemo treatments knock me out cold. I am officially a lightweight. I slept through most of my treatment and much of the afternoon. (This is actually not totally bad...They were great naps, but Geoff had brought games and stuff to do and I was looking forward to this time with him).
5. I won't have the same chemo nurse next week because she has next Tuesday off (but all the other chemo nurses we met seemed great too)
6. Despite the anti-nausea meds I still had some lingering nausea. It wasn't too bad, but it wasn't so great either.
 |
| It cleaned up pretty well. |
8. It's 12:30 am and I have to be back at the hospital by 7:15 am for today's radiation treatment.
9. I didn't have to have lasix because I was able to meet my "output goal" within maybe 5 minutes of starting the actual chemo treatment (this was the good part...the bad part is the next sentence). I continued to meet this "output goal" many more times over the next few hours
10. We picked E from daycare and headed straight to urgent care. He has been sick for a few weeks now and he seems to be getting worse rather than better. Early last week our pediatrician diagnosed him with hand, foot, and mouth disease (really a virus). On the way home from Iowa on the weekend we made a stop and I looked in his mouth to see what looked a lot like strep to me. In addition he is coughing until he throws up. Argh! Anyway, consensus was yes, hand, foot, and mouth disease, a right ear infection, probable strep, and probable whooping cough. WTH? Poor kid...We were offered diagnostic tests for the strep and whooping cough but we decided to forgo torturing him since we knew when we went to urgent care were headed for antibiotics anyway (that's how it works...urgent care=antibiotics...always). He also had a dose of oral steroids-which I give full credit for him eating dinner tonight. I feel terrible for the kid and I feel even worse because I knew he wasn't feeling well but he was sitting right at that cusp of should we do more or give him more time...Hindsight may be 20/20 but I feel crappy that we didn't revisit our pediatrician or push the issue more
Juxtaposition Bonus:
I found out that just one of my 4 home anti-nausea meds costs $100/pill (we did not inquire as to cost of the others). Thank god we now have a plan with a "higher" deductible (I say it this way b/c we have a flex plan that covers this deductible. In all honesty, it took less a month of all of this to meet that deductible) so we paid nothing. I feel really crappy for the people with 80/20 plans or other crummy insurance (or no insurance for that matter).
Monday, August 20, 2012
Power Port
Today was the day of my port placement. I had to be to the hospital by 7 to get an IV placed and then it was off to interventional radiology for the actual port placement.
We realized last week that we weren't sure what time our daycare opens and we needed to check...but we forgot. We remembered again last night, but it was too late so we decided that Geoff would drop me off and then drop the kids off. Then he would come back and meet up with me. This seemed like a good enough plan for everyone.
Overall it worked fine, but we realized this morning that E was too sick to go to daycare. He was coughing and miserable. We decided he would hang out with Geoff for the morning and since I was supposed to be able to go home around noon we would be home in time for him to have a long afternoon nap.
This revised plan worked great and E loved all the attention. When they first arrived after dropping off Ella, I had just been hooked up to IV fluids. E looked at my IV and asked what it was. I told him it was an IV and how I would get my medicine. I reminded him that he had one when he was in the hospital and he nodded and replied "ya, I cried." Then he wanted to know about my ID bracelet and asked if it had my birthday on it (birthdays=very important to 3 year olds).
I'm glad my boys were with me. Geoff is a great support, but I tell that he is out of his comfort zone and overwhelmed at times. E on the other hand, finds all of this fascinating and wants to ask questions. I don't like being a patient and having the boys with me is not only a great distraction, it allows me to tap into my comfort zone as a nurse.
The port placement itself took about a hour. I found it to be very comfortable and tolerable. I had fentanyl for pain in addition to topical analgesics. I was under a drape from head to toe for the procedure. There was a window for them to place the port on my right upper chest and they cut me a window on the left side by my face so I could see/talk with my nurse.
I was warned that this drape makes some people very claustrophobic, but I was fine. The room was cold because all the staff has to wear lead aprons during the procedure, so I found the drape to be a nice insulating layer. I could feel pressure when they threaded the catheter portion and I knew when they made the incision or put the sutures in, but I couldn't feel any of it. In the end I had 4 deep tissue sutures and some dermabond (surgical glue for your skin) and two dressings.
 | |||||||
| Not my most best photo... :) |
After the procedure was done I was transported to the chemotherapy treatment area to recover. I met up with Geoff and E again and we had a nice time talking and snacking. Just before we left my amazing NP came to visit for a bit and then we were on our way.
 |
| See? Really, it wasn't bad. |
Geoff stopped and got us lunch for the way home. E fell asleep as did I. When we got home Geoff helped get us into the house and E and I basically slept the rest of the afternoon. Geoff took care of all of my demands...I'll be honest, it sucks to not be allowed to lift more than 10+ lbs on your right side when you have kids, pets, etc. I never think about how much I lift or move. I also had no idea how much it was going to hurt to try to get into bed. Once I took some ibuprofen and used an ice pack it was fine, but initially all I could think was "what have I done?"
Really the day wasn't pretty ok. The best part was the mail. I got a bunch of wonderful cards. Each one filled with a special note. I also received a belated bday present and an awesome care package! So far I've gotten two care packages and they are so much fun to look through. Today's was from some friends of ours and included appropriately crass comments such as "fuck cancer" throughout. It made us both giggle which in itself was wonderful. It also included a modern poetry book with peoms by such greats as Snooki, Kanye West, and The Biebs.
I couldn't stay awake to read it today but I have no doubt that it will appeal to my high cultural and creative standards tomorrow during chemo.
Complex
Tonight I planned to have a "Letting Go" Party. Essentially this means I write out some things about my cancer experience (I was going to use blog excerpts), read them out load, burn them in our fire pit, and emotionally let them go.
It seemed like it was going to a perfect night for this. The cooler temps at night make have made it apparent that we are on brink of fall.
Furthermore, I get my port placed tomorrow and chemo and radiation start Tuesday. This would be the perfect night to have a glass of wine and cleanse myself emotionally.
I planned to go riding in the evening, come home and get the kids to bed. Once they were asleep we would get the fire pit going and relax.
While I was out riding it suddenly got very dark. There was some thunder and lightening that convinced us it was time to head in. I drove home and crossed through a few areas of patchy sprinkles, but that was all I ever saw of rain. None-the-less, the idea of rain initiated doubts for my party tonight.
I began to contemplate just lighting candles and relaxing in the house instead. I considered having to be at the hospital at 7am tomorrow and how early I was really going to have to get up to get the kids ready and dropped off at daycare in order to make my 7 appointment time. Yuck!
I decided going to bed seemed like a better idea tonight.
Of course it is never that easy.
I gave the kids a bath and they did their best to try to drown each other. Then E declared he needed to go to bed "right now." He didn't really mean it apparently. On the other hand, Ella did mean it. Then E woke her up. Then no one would go to bed. Then suddenly they both went to bed and I realized that I wasn't ready to go to bed.
To complicate things, Geoff made it apparent that he was having a hard time with everything himself tonight. For the most part, I've been over sweating the small stuff lately. I've realized life really is too short. Unfortunately, Geoff isn't quite there yet. He's worried about this week, but he doesn't have a blog to sort through his thoughts. He doesn't want to burden me or anyone else so he doesn't say anything. Then it all hits him.
He is not ready for a "letting go" party yet. He doesn't quite know what to let go. I think I'll wait for my party until he has a better idea of what to celebrate for his own.
...All this crap can just be too complex at times.
It seemed like it was going to a perfect night for this. The cooler temps at night make have made it apparent that we are on brink of fall.
Furthermore, I get my port placed tomorrow and chemo and radiation start Tuesday. This would be the perfect night to have a glass of wine and cleanse myself emotionally.
I planned to go riding in the evening, come home and get the kids to bed. Once they were asleep we would get the fire pit going and relax.
While I was out riding it suddenly got very dark. There was some thunder and lightening that convinced us it was time to head in. I drove home and crossed through a few areas of patchy sprinkles, but that was all I ever saw of rain. None-the-less, the idea of rain initiated doubts for my party tonight.
I began to contemplate just lighting candles and relaxing in the house instead. I considered having to be at the hospital at 7am tomorrow and how early I was really going to have to get up to get the kids ready and dropped off at daycare in order to make my 7 appointment time. Yuck!
I decided going to bed seemed like a better idea tonight.
Of course it is never that easy.
I gave the kids a bath and they did their best to try to drown each other. Then E declared he needed to go to bed "right now." He didn't really mean it apparently. On the other hand, Ella did mean it. Then E woke her up. Then no one would go to bed. Then suddenly they both went to bed and I realized that I wasn't ready to go to bed.
To complicate things, Geoff made it apparent that he was having a hard time with everything himself tonight. For the most part, I've been over sweating the small stuff lately. I've realized life really is too short. Unfortunately, Geoff isn't quite there yet. He's worried about this week, but he doesn't have a blog to sort through his thoughts. He doesn't want to burden me or anyone else so he doesn't say anything. Then it all hits him.
He is not ready for a "letting go" party yet. He doesn't quite know what to let go. I think I'll wait for my party until he has a better idea of what to celebrate for his own.
...All this crap can just be too complex at times.
Sunday, August 19, 2012
Iowa
Last weekend we drove to visit my grandparents and today we drove to visit Geoff's grandmother and Aunt.
We want to make sure we see all the grandparents before I start treatments for three reasons...Number 1. we haven't seen any of them recently so we are due for visits and we aren't sure how much I'll feel up to traveling in the near future 2. we want to check in on them 3. we want them to be able to see us and the kids and know we really are ok.
It was a nice day for a little road trip and visit and we had a good time.
Since the visits were fairly last minute we couldn't get the Coon hounds their usual suite together at the kennel (they could be separate, but we aren't sure that would go over so well), so with Grandma's approval we brought them with. They did their best to make sure they will not be invited back by Grandma or her neighbors. The video below is of them at their best...
I wish next weekend we were off to visit Geoff's other grandparents in Australia...Probably not going to work with my treatment schedule right now so we'll have to wait until I'm done with midwifery school like previously planned.
We want to make sure we see all the grandparents before I start treatments for three reasons...Number 1. we haven't seen any of them recently so we are due for visits and we aren't sure how much I'll feel up to traveling in the near future 2. we want to check in on them 3. we want them to be able to see us and the kids and know we really are ok.
It was a nice day for a little road trip and visit and we had a good time.
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| E spent much of the day playing with a trolley car toy. |
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| Geoff and Grandma making lunch. |
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| The kiddos checking on the pups. |
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| Geoff, Aunt Pat, Grandma, Ella, and E. |
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| E teaching Grandma how to use "his" iPad. |
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| Wilco the weirdo wienie. |
I wish next weekend we were off to visit Geoff's other grandparents in Australia...Probably not going to work with my treatment schedule right now so we'll have to wait until I'm done with midwifery school like previously planned.
Saturday, August 18, 2012
Weaning
The big focus of the day was the sick kids. Fortunately they slept in, sort of...
Ella woke up early and then just about the time she fell back to sleep, Ephraim woke up. He was so excited that he was in our room and in our bed that he was content to read books and play quietly. When he started to escalate I let him watch a little bit of Nick Jr. (we really try to not let the kids watch tv except for sick days...Geoff and I feel E has had too much tv/iPad time lately, but sometimes you just do what you have to do).
Eventually I got everyone up, fed, diapers changed/dogs outside and then I tried to get the kids outside...with two sick kids, who really just want to sleep, outside isn't so much fun. Eventually I put Ella in the stroller and convinced E to ride his bike. Then the three of us plus Wilco, the wiener dog, headed out for a walk. We never made it far enough to drown out the barking of the Coonhounds who felt the need to voice the injustice of being left at home.
When we got back home I had to go get E out of his bed to try to get him to eat something. Eventually he reluctantly ate a pudding cup (I tried everything!) and then told me again he wanted to go take a nap.
Ella didn't nap quite this easy, but not much more difficult (she fell asleep getting a neb treatment). I took the day off from school and had time to watch tv and search out information on pumping/dumping while I'm on chemo-radiation.
It probably goes without saying that chemo and breastfeeding don't go together, but it really depends on the chemo agent used. Unfortunately the Cisplatin I'll have is very incompatible and there is very little information about how long to wait between treatment and being able to resume breastfeeding. My wonderful NP has supported and helped me look into this but for the most part consensus has been to wean and be done with it.
I'm sure it's odd to some of you, make that many of you...but I don't want to give up my special powers. I'm crunchy and Ella and I enjoy our oxytocin bond. Initially, I was told that it could be up to 6 months from the time I'm done with treatment before I can resume breastfeeding and I was willing to give it a try. Today I found out that I need to wait a minimum of a month once I'm done with treatment. I was ecstatic!
Now we are working on finding out about getting levels of Cisplatin in milk tested. I want to be able to resume breastfeeding and do the crunchy thing and nurse my toddler, but I want it to be safe. I nursed E to one year so I've already beaten that. I said I was ok with a year with Ella but in all honesty, I was hoping to make it to the WHO's (World Health Organization) recommendation of 2 or even go for 3.
It's another one of life's little ironies that I used to make fun of women who breastfed their toddlers and now I'm hoping I'll still get to be one of them. I won't get to be pregnant again. I won't get to give birth again. I won't get to breastfeed again. Instead I'm going to see if I can find the strength to suck it up and pump and dump for a few months so Ella can have another 6, 12 or 18 months. Maybe she won't want to and that's fine. Maybe I'll decide it's too much, that's fine too. I just don't want to look back at all of this and say I really wish I would have...
It's hard for me to really say why this is so important to me. I think it really stems back to Ella's birth. I was a super mom. I had a 12 lb baby at home naturally. I know I rocked it. I caught my own baby and immediately brought her to my chest and nursed her. (If you knew what Ella looked like at birth it wouldn't surprise you that it was really this easy for us)...This has always been our thing.
After hemorrhaging (retained placenta) there was a lot to process. I wasn't with my baby when she was weighed for the first time. I was never with my baby for her first car ride. I didn't dress her the first time. There were a lot of little firsts that I missed out on. I grieved these little losses and other people didn't understand because I had "a healthy baby" afterall. It isn't always that simple though. I couldn't just make myself forget about all those milestones we videotaped with our first child.
As it was all happening, I had a good idea how bad my hemorrhage was. I knew how much blood I lost. I knew that I was in and out of consciousness on the ambulance ride, in the ER, on the way to the OR. I remember the anesthesiologist telling me to count backwards from 10 and making it to 7, but I didn't remember that I had defib pads on until I read my own medical records. I was scared. I knew I was loosing too much blood and honestly, I wasn't sure I was going to make it.
What I did know was that I had held my baby and I nursed her. We had a wonderful photographer that captured those moments and had I not made it, my little girl would always have had those photos and only those photos of her with me.
One of my first memories of the recovery room was being able to nurse her again. I missed a few hours of her life but that whole time my wonderful husband, doula, and midwives all took turns holding my precious babe skin-to-skin. No one fed her formula. She has never had formula. (and never will...)
This really is our thing. Initially when I was diagnosed with cancer I was willing to let it go, but Geoff could tell it crushed me. He was the one that brought it up. He was the one that encouraged me to dig deeper and he said he would help me however he could. He understands how important this is.
He is the one that is going to feel the brunt of Ella's wrath on Tuesday when nursing is no longer an option. After all, he is the one that would console her when I was at work. He is the one that is going to understand the most painful part of Tuesday won't be the radiation or the chemo. I can handle all that. What is going to break my heart is listening to Ella cry and knowing that I no longer know how to console my own daughter. Knowing that if I try to hold her, it is only going to upset her more.
I know that it will get better. I know that the worst will only be for a few days at most. We'll get through it. In a way it makes me happy that if we are able to resume our nursing relationship she will have other coping mechanisms by then. Our relationship will be redefined.
We'll have to see how it all goes. If there is one thing that I have really learned from all of this it is to take one thing at a time. Right now I'm making the most of the time I have before having to cut Ella off. We have milk stored. Lots. She'll be ok. I'll be ok. Geoff will probably be ok too.
Ella woke up early and then just about the time she fell back to sleep, Ephraim woke up. He was so excited that he was in our room and in our bed that he was content to read books and play quietly. When he started to escalate I let him watch a little bit of Nick Jr. (we really try to not let the kids watch tv except for sick days...Geoff and I feel E has had too much tv/iPad time lately, but sometimes you just do what you have to do).
Eventually I got everyone up, fed, diapers changed/dogs outside and then I tried to get the kids outside...with two sick kids, who really just want to sleep, outside isn't so much fun. Eventually I put Ella in the stroller and convinced E to ride his bike. Then the three of us plus Wilco, the wiener dog, headed out for a walk. We never made it far enough to drown out the barking of the Coonhounds who felt the need to voice the injustice of being left at home.
When we got back home I had to go get E out of his bed to try to get him to eat something. Eventually he reluctantly ate a pudding cup (I tried everything!) and then told me again he wanted to go take a nap.Ella didn't nap quite this easy, but not much more difficult (she fell asleep getting a neb treatment). I took the day off from school and had time to watch tv and search out information on pumping/dumping while I'm on chemo-radiation.
It probably goes without saying that chemo and breastfeeding don't go together, but it really depends on the chemo agent used. Unfortunately the Cisplatin I'll have is very incompatible and there is very little information about how long to wait between treatment and being able to resume breastfeeding. My wonderful NP has supported and helped me look into this but for the most part consensus has been to wean and be done with it.
I'm sure it's odd to some of you, make that many of you...but I don't want to give up my special powers. I'm crunchy and Ella and I enjoy our oxytocin bond. Initially, I was told that it could be up to 6 months from the time I'm done with treatment before I can resume breastfeeding and I was willing to give it a try. Today I found out that I need to wait a minimum of a month once I'm done with treatment. I was ecstatic!
Now we are working on finding out about getting levels of Cisplatin in milk tested. I want to be able to resume breastfeeding and do the crunchy thing and nurse my toddler, but I want it to be safe. I nursed E to one year so I've already beaten that. I said I was ok with a year with Ella but in all honesty, I was hoping to make it to the WHO's (World Health Organization) recommendation of 2 or even go for 3.
It's another one of life's little ironies that I used to make fun of women who breastfed their toddlers and now I'm hoping I'll still get to be one of them. I won't get to be pregnant again. I won't get to give birth again. I won't get to breastfeed again. Instead I'm going to see if I can find the strength to suck it up and pump and dump for a few months so Ella can have another 6, 12 or 18 months. Maybe she won't want to and that's fine. Maybe I'll decide it's too much, that's fine too. I just don't want to look back at all of this and say I really wish I would have...
It's hard for me to really say why this is so important to me. I think it really stems back to Ella's birth. I was a super mom. I had a 12 lb baby at home naturally. I know I rocked it. I caught my own baby and immediately brought her to my chest and nursed her. (If you knew what Ella looked like at birth it wouldn't surprise you that it was really this easy for us)...This has always been our thing.
After hemorrhaging (retained placenta) there was a lot to process. I wasn't with my baby when she was weighed for the first time. I was never with my baby for her first car ride. I didn't dress her the first time. There were a lot of little firsts that I missed out on. I grieved these little losses and other people didn't understand because I had "a healthy baby" afterall. It isn't always that simple though. I couldn't just make myself forget about all those milestones we videotaped with our first child.
As it was all happening, I had a good idea how bad my hemorrhage was. I knew how much blood I lost. I knew that I was in and out of consciousness on the ambulance ride, in the ER, on the way to the OR. I remember the anesthesiologist telling me to count backwards from 10 and making it to 7, but I didn't remember that I had defib pads on until I read my own medical records. I was scared. I knew I was loosing too much blood and honestly, I wasn't sure I was going to make it.
What I did know was that I had held my baby and I nursed her. We had a wonderful photographer that captured those moments and had I not made it, my little girl would always have had those photos and only those photos of her with me.
One of my first memories of the recovery room was being able to nurse her again. I missed a few hours of her life but that whole time my wonderful husband, doula, and midwives all took turns holding my precious babe skin-to-skin. No one fed her formula. She has never had formula. (and never will...)
This really is our thing. Initially when I was diagnosed with cancer I was willing to let it go, but Geoff could tell it crushed me. He was the one that brought it up. He was the one that encouraged me to dig deeper and he said he would help me however he could. He understands how important this is.
He is the one that is going to feel the brunt of Ella's wrath on Tuesday when nursing is no longer an option. After all, he is the one that would console her when I was at work. He is the one that is going to understand the most painful part of Tuesday won't be the radiation or the chemo. I can handle all that. What is going to break my heart is listening to Ella cry and knowing that I no longer know how to console my own daughter. Knowing that if I try to hold her, it is only going to upset her more.
I know that it will get better. I know that the worst will only be for a few days at most. We'll get through it. In a way it makes me happy that if we are able to resume our nursing relationship she will have other coping mechanisms by then. Our relationship will be redefined.
We'll have to see how it all goes. If there is one thing that I have really learned from all of this it is to take one thing at a time. Right now I'm making the most of the time I have before having to cut Ella off. We have milk stored. Lots. She'll be ok. I'll be ok. Geoff will probably be ok too.
Friday, August 17, 2012
Infirmary
Today was another roller coaster day with big highs and lows, but we survived with a clean house (thanks to my wonderful aunts/uncles), great food (thanks to multiple friends) and a few minutes to ourselves.
I thought everyone was starting to feel better but just as I sat down to write we heard E coughing. After a lot of coughing, crying and throwing up multiple times E declared he wanted to sleep in our bed.
Ella was already asleep in our bed...so now the question becomes where do we sleep? We have a king-sized bed but it's amazing how much space two little people can take up.
I thought everyone was starting to feel better but just as I sat down to write we heard E coughing. After a lot of coughing, crying and throwing up multiple times E declared he wanted to sleep in our bed.
Ella was already asleep in our bed...so now the question becomes where do we sleep? We have a king-sized bed but it's amazing how much space two little people can take up.
Wednesday, August 15, 2012
Informed consent not uninformed compliance
I'll warn you this is going to be an earful...
Today I had my mapping/planning CT. I woke up in a good mood and ready to get this done. It felt like it would be a step in the right direction and the start of my official treatment. I want to start treatment so I can be closer to being done.
There are a few catches to this, like weaning Ella, or knowing I'm going to feel crummy, but other than that I just want to get going. I want to be a cancer survivor instead of living with cancer and always wondering...well, I'm sure the wondering will never really go away, but well, whatever.
So we (Geoff came with) got to the cancer center and checked in. The people that work at the check in desk are UW's least happy employees. Always. I suppose they see a lot and they basically herd cattle so I would probably be unhappy too. On the other hand, they do have a basket of cute stickers on their desk, so that might counter-balance things for me.
Anyway, they checked me in. I told them I needed labs drawn and lab was going to put in my IV for the day. They told me no. I didn't need labs today. Those were for next Monday when I get my port placed. I repeated that the orders for my labs were put in last week and I was supposed to either get them last Thursday or today. I also mentioned that this was confirmed with two phone calls to me yesterday. Finally, they decided that I was right or they didn't care. I'm guessing the latter. This was communicated with a flat "you can go sit down and wait for labs and IV now" as they handed over a patient pager.
Ironically, the wait for lab was really quick today and they were once again awesome at IV placement.
After I had my IV placed it was off to my new 5 day a week home, Radiation Oncology.
Once I checked in I was taken back to have my IV flushed (a little ridiculous since my IV was less than 5 minutes old, but hey...), then sent back out to the waiting room. Then I was called back to make my abdominal mold for my radiation treatments.
I've been curious how the mold was going to work, so in a weird way I was looking forward to this appointment. First, they took my picture for my medical record. Not sure why this was suddenly necessary....Then, the therapist mixed up a bunch of chemicals and put them in what was essentially a garbage bag containing a thick sheet of Styrofoam. As he was getting everything ready, another therapist came in with her intern and the three of them helped with making my belly board.
I won't lie, this was my favorite part of everything so far. The chemical reaction of whatever they mixed up and put in the bag made everything warm. My job was to lie belly down on this warm bag, align myself according to their instructions, and then sit still until the chemicals conformed to me (about 5 minutes). It was like laying down on a soft heated bed.
Then when it was done I got up and had a seat in a chair in the room. They got out a hacksaw and cut a chunk out of my belly board. They taped the edges and put my name on it. Voila! it was done. Wondering what the hell I'm talking about? Well, this belly board is something I'm going to lie on during my radiation treatments. The part that they cut out corresponds to my upper abdomen/chest area and apparently this helps push my internal organs (intestines, stomach, etc.) that we don't want radiated up and out of the way from the radiation treatments.
The next step was to take me and my belly board to the CT scan. They wanted to set a few things up in the CT scan room so they had me sit in a IV placement room and stare at the walls for about 5-10 minutes. I was really missing my iPad/phone/husband at this time, but then they gave me a glass of water. No sarcasm intended, I was ecstatic.
I wasn't supposed to have food or water for 4 hours before the CT. They always say this in case there is a reaction to the contrast. I had a few sips of water before getting to the hospital, but otherwise I complied. Unfortunately though, I had forgotten to set my alarm around this, so the last time I had anything to eat was last night and it was now nearly noon. I'm still sick with this miserable cold and all I want is fluids so a glass of water was a gift!
Of course they were giving me water because they wanted my bladder full so it would be more obvious on their images and also help displace my abdominal organs up. A win-win for all of us.
A short time later they came and got me for my CT. I was still looking forward to this. Now I not only wanted to get this done, I also knew I liked my belly board so I knew I'd be comfortable. They had told me ahead of time the CT was only going to take a few minutes so I figured it was going to be a breeze. More like Hurricane Katrina!
So first they tell me I had to pull my pants down mid-thigh and lay face down. They reassured me they would put a towel over my tush, but I was pretty ticked that this part of the CT was never previously mentioned. Then as I was laying face down on my belly board with a towel covering me, another person informed me they were going to insert a probe into my cha cha. WHAT THE HELL?!?!?! Seriously, this was never mentioned before!
Of course I just muttered "ok" and complied. What was I supposed to say at this point?
I don't really know everything that happened after that because I was miserable. If everything that has happened so far isn't degrading enough, then they have me laying face down with my pants pulled down to mid-thigh and someone who I can't even see puts a probe in me?
I quietly sobbed through the whole CT. I felt so violated.
The CT itself was very short and would have been fine otherwise. Laying face down on my belly board and going in and out of the CT scanner would have been like taking a nap and belly surfing the smoothest wave. If it wasn't for the other stuff it would have been fine.
When they were done with my scan one of the techs came to take my IV out. When she did, she realized I had been crying. She gave me a tissue and asked if me it was all "hitting me at different times." I told her no, that wasn't it. I told her that I was really mad that I wasn't informed about what was going to happen during this CT prior to the CT. She replied that she understood and that this has been happening a lot lately. As she was telling me this, the intern said something about "you are going to feel a few little pokes...those are your tattoos..." WTF?!?!?! Yup, that's right. As if the pants down and probe weren't enough. They gave me 3 tattoos.
Probably no one would ever notice them. There are the size of a needle prick...but I know they are there. I had no say in them and I didn't know about them until they were being put in. Again, violating.
It's not that I would have refused them. I understand their purpose. They are guidelines that they will use for lining me up for my radiation. It's just that as a care provider I am taught to educate my patients about what is going to happen to them before it happens to them. Make them feel like it is really their decision. Make sure they know they really have a choice. Don't force them into anything. We as nurse midwives don't believe in what we called "informed compliance." We believe in "informed consent." What happened to me today was what I will call "uninformed compliance."
I was still crying when I got back to the waiting room. Geoff looked at me and asked if I was ok and I just muttered "I want to go. I want to go right now." We did stop and get food, but we took it with us because I wanted out of that place. I was so miserable.
When I got home, the kiddos were doing well, but tired. My mom was just about to leave and Ella started melting down. Ella wanted to nurse and because I had contrast with my CT I can't nurse her for 12 hours. There was absolutely no consoling Ella. In the end, mom stayed with E and I put Ella in the stroller and walked with her around the neighborhood until she went to sleep. It broke my heart. It broke my mom's heart (she has heard about all this before but never witnessed it). When she left I was ready to be alone so I could just cry.
Just before my mom really left, a friend was kind enough to drop off some fresh, yummy zucchini bread. She had seen on Facebook that I wasn't allowed to eat this morning and thought that might make it better. Little did she know how much I needed that zucchini bread today...
Fast forward a few hours...The radiation oncology PA (physician's assistant) called to set up my chemo for next Tuesday. I've never met her or talked to her before, but the poor woman got an earful about today's appointment. She was an amazing listener and understood why I was so upset. She reassured me that she understood that this was something that needed to be fixed for patients.
An hour or so later, my radiation oncologist called. She heard from the PA what happened and that I was upset. She listened and apologized too. I think she genuinely understood some of why I was upset, but then she suggested that maybe I see one of the cancer center's health psychologists because I'm having a hard time with all of this. This pissed me off too.
I stayed calm and reassured her that I will remain open to the idea, but then I explained that I don't think it is unrealistic to expect that I want to know what is going to happen to me before it happens. My oncology NP has been great about this. She has understood from day 1 that I like to understand what is going to happen and have an opportunity to look things up before they happen. She understands that I went from being a normal 35 year old woman who gets to be in control of her body to a cancer patient who is just along for the crappy ride my body has to take to get through all of this...
Anyway, this post has gone on long enough...I've decided that today was crappy and I'm having ice cream for dinner. Who needs a health psychologist when there is ice cream? :)
Today I had my mapping/planning CT. I woke up in a good mood and ready to get this done. It felt like it would be a step in the right direction and the start of my official treatment. I want to start treatment so I can be closer to being done.
There are a few catches to this, like weaning Ella, or knowing I'm going to feel crummy, but other than that I just want to get going. I want to be a cancer survivor instead of living with cancer and always wondering...well, I'm sure the wondering will never really go away, but well, whatever.
So we (Geoff came with) got to the cancer center and checked in. The people that work at the check in desk are UW's least happy employees. Always. I suppose they see a lot and they basically herd cattle so I would probably be unhappy too. On the other hand, they do have a basket of cute stickers on their desk, so that might counter-balance things for me.
Anyway, they checked me in. I told them I needed labs drawn and lab was going to put in my IV for the day. They told me no. I didn't need labs today. Those were for next Monday when I get my port placed. I repeated that the orders for my labs were put in last week and I was supposed to either get them last Thursday or today. I also mentioned that this was confirmed with two phone calls to me yesterday. Finally, they decided that I was right or they didn't care. I'm guessing the latter. This was communicated with a flat "you can go sit down and wait for labs and IV now" as they handed over a patient pager.
Ironically, the wait for lab was really quick today and they were once again awesome at IV placement.
After I had my IV placed it was off to my new 5 day a week home, Radiation Oncology.Once I checked in I was taken back to have my IV flushed (a little ridiculous since my IV was less than 5 minutes old, but hey...), then sent back out to the waiting room. Then I was called back to make my abdominal mold for my radiation treatments.
I've been curious how the mold was going to work, so in a weird way I was looking forward to this appointment. First, they took my picture for my medical record. Not sure why this was suddenly necessary....Then, the therapist mixed up a bunch of chemicals and put them in what was essentially a garbage bag containing a thick sheet of Styrofoam. As he was getting everything ready, another therapist came in with her intern and the three of them helped with making my belly board.
I won't lie, this was my favorite part of everything so far. The chemical reaction of whatever they mixed up and put in the bag made everything warm. My job was to lie belly down on this warm bag, align myself according to their instructions, and then sit still until the chemicals conformed to me (about 5 minutes). It was like laying down on a soft heated bed.
Then when it was done I got up and had a seat in a chair in the room. They got out a hacksaw and cut a chunk out of my belly board. They taped the edges and put my name on it. Voila! it was done. Wondering what the hell I'm talking about? Well, this belly board is something I'm going to lie on during my radiation treatments. The part that they cut out corresponds to my upper abdomen/chest area and apparently this helps push my internal organs (intestines, stomach, etc.) that we don't want radiated up and out of the way from the radiation treatments.
The next step was to take me and my belly board to the CT scan. They wanted to set a few things up in the CT scan room so they had me sit in a IV placement room and stare at the walls for about 5-10 minutes. I was really missing my iPad/phone/husband at this time, but then they gave me a glass of water. No sarcasm intended, I was ecstatic.
I wasn't supposed to have food or water for 4 hours before the CT. They always say this in case there is a reaction to the contrast. I had a few sips of water before getting to the hospital, but otherwise I complied. Unfortunately though, I had forgotten to set my alarm around this, so the last time I had anything to eat was last night and it was now nearly noon. I'm still sick with this miserable cold and all I want is fluids so a glass of water was a gift!
Of course they were giving me water because they wanted my bladder full so it would be more obvious on their images and also help displace my abdominal organs up. A win-win for all of us.
A short time later they came and got me for my CT. I was still looking forward to this. Now I not only wanted to get this done, I also knew I liked my belly board so I knew I'd be comfortable. They had told me ahead of time the CT was only going to take a few minutes so I figured it was going to be a breeze. More like Hurricane Katrina!
So first they tell me I had to pull my pants down mid-thigh and lay face down. They reassured me they would put a towel over my tush, but I was pretty ticked that this part of the CT was never previously mentioned. Then as I was laying face down on my belly board with a towel covering me, another person informed me they were going to insert a probe into my cha cha. WHAT THE HELL?!?!?! Seriously, this was never mentioned before!
Of course I just muttered "ok" and complied. What was I supposed to say at this point?
I don't really know everything that happened after that because I was miserable. If everything that has happened so far isn't degrading enough, then they have me laying face down with my pants pulled down to mid-thigh and someone who I can't even see puts a probe in me?
I quietly sobbed through the whole CT. I felt so violated.
The CT itself was very short and would have been fine otherwise. Laying face down on my belly board and going in and out of the CT scanner would have been like taking a nap and belly surfing the smoothest wave. If it wasn't for the other stuff it would have been fine.
When they were done with my scan one of the techs came to take my IV out. When she did, she realized I had been crying. She gave me a tissue and asked if me it was all "hitting me at different times." I told her no, that wasn't it. I told her that I was really mad that I wasn't informed about what was going to happen during this CT prior to the CT. She replied that she understood and that this has been happening a lot lately. As she was telling me this, the intern said something about "you are going to feel a few little pokes...those are your tattoos..." WTF?!?!?! Yup, that's right. As if the pants down and probe weren't enough. They gave me 3 tattoos.
Probably no one would ever notice them. There are the size of a needle prick...but I know they are there. I had no say in them and I didn't know about them until they were being put in. Again, violating.
It's not that I would have refused them. I understand their purpose. They are guidelines that they will use for lining me up for my radiation. It's just that as a care provider I am taught to educate my patients about what is going to happen to them before it happens to them. Make them feel like it is really their decision. Make sure they know they really have a choice. Don't force them into anything. We as nurse midwives don't believe in what we called "informed compliance." We believe in "informed consent." What happened to me today was what I will call "uninformed compliance."
I was still crying when I got back to the waiting room. Geoff looked at me and asked if I was ok and I just muttered "I want to go. I want to go right now." We did stop and get food, but we took it with us because I wanted out of that place. I was so miserable.
When I got home, the kiddos were doing well, but tired. My mom was just about to leave and Ella started melting down. Ella wanted to nurse and because I had contrast with my CT I can't nurse her for 12 hours. There was absolutely no consoling Ella. In the end, mom stayed with E and I put Ella in the stroller and walked with her around the neighborhood until she went to sleep. It broke my heart. It broke my mom's heart (she has heard about all this before but never witnessed it). When she left I was ready to be alone so I could just cry.
Just before my mom really left, a friend was kind enough to drop off some fresh, yummy zucchini bread. She had seen on Facebook that I wasn't allowed to eat this morning and thought that might make it better. Little did she know how much I needed that zucchini bread today...
Fast forward a few hours...The radiation oncology PA (physician's assistant) called to set up my chemo for next Tuesday. I've never met her or talked to her before, but the poor woman got an earful about today's appointment. She was an amazing listener and understood why I was so upset. She reassured me that she understood that this was something that needed to be fixed for patients.
An hour or so later, my radiation oncologist called. She heard from the PA what happened and that I was upset. She listened and apologized too. I think she genuinely understood some of why I was upset, but then she suggested that maybe I see one of the cancer center's health psychologists because I'm having a hard time with all of this. This pissed me off too.
I stayed calm and reassured her that I will remain open to the idea, but then I explained that I don't think it is unrealistic to expect that I want to know what is going to happen to me before it happens. My oncology NP has been great about this. She has understood from day 1 that I like to understand what is going to happen and have an opportunity to look things up before they happen. She understands that I went from being a normal 35 year old woman who gets to be in control of her body to a cancer patient who is just along for the crappy ride my body has to take to get through all of this...
Anyway, this post has gone on long enough...I've decided that today was crappy and I'm having ice cream for dinner. Who needs a health psychologist when there is ice cream? :)
Tuesday, August 14, 2012
Pay it forward....
As we continued to be amazed and overwhelmed by the outpouring of support we have received, we have begun to realize that it is unlikely we will ever be able to make it up to each and every one of you.
Please know that we appreciate each and every phone call, text message, Facebook message, card, meal, gift card, day of doggy daycare, offer to babysit, offer to drive for treatments, etc. (housekeeping too, we can't wait to have the cleaning service come Thursday!!!) We love each and every one of you and can't thank you enough! All of you have brightened our days in so many ways.
I probably sound like I'm 100 years old but I get excited when I hear the mail truck come down the street. I have all of my cards stashed together so I can look at them whenever I need a pick-me-up.
Cancer sucks and never did I expect this would happen to me (who does right?). What is possibly sadder is that I never knew how many people cared...Now we do though. We promise that if nothing else we will always help someone else and we will always make sure that someone else that needs to know that others care, will know. We will pay it forward. Thank you.
Please know that we appreciate each and every phone call, text message, Facebook message, card, meal, gift card, day of doggy daycare, offer to babysit, offer to drive for treatments, etc. (housekeeping too, we can't wait to have the cleaning service come Thursday!!!) We love each and every one of you and can't thank you enough! All of you have brightened our days in so many ways.
I probably sound like I'm 100 years old but I get excited when I hear the mail truck come down the street. I have all of my cards stashed together so I can look at them whenever I need a pick-me-up.
Cancer sucks and never did I expect this would happen to me (who does right?). What is possibly sadder is that I never knew how many people cared...Now we do though. We promise that if nothing else we will always help someone else and we will always make sure that someone else that needs to know that others care, will know. We will pay it forward. Thank you.
C is for Circling Up
I have no idea how to really describe the principle of "circling up" to someone unfamiliar with Frontier Nursing University. The significance of circling up is defined by Frontier with the following mnemonic and description.
When I attended Frontier Bound in May of last year we were told that one of the reasons for physically attending an orientation session was to meet our community of fellow students. We did "circle up" at the end of each day and we were told that after we left orientation we would experience the extended community of Frontier "circling up" to support each other in different ways.
In all honesty I approached my first time "circling up" with an awkward shyness. I figured it was just one of those things we did at what I called "nurse camp" and they would have us do each time we were at "nurse camp" but it wouldn't ever have any relevance in my real life.
Not even a week after I finished orientation, also known as Frontier Bound, the Joplin tornado struck. Almost immediately my school email was swarmed with messages of love and support for the students and faculty affected by this disaster. All of our school forums and message boards were filled too. I thought it was sweet.
This continued for other large storms, faculty receiving awards or publication, DNP (Doctor of Nursing Practice) candidates successfully completing their programs. On a smaller scale the students from our specific orientation class started private Facebook groups to support each other and then we broke apart into other groups for specific classes and interests. There is even a group that specifically supports each others weight loss efforts.
When we attend conferences the Frontier students find each other and circle up. I was not convinced that I wanted to participate in "circling up" outside of the sacred grounds of our "nurse camp" located in the mountains of Hyden, Kentucky, but I have and each time it makes me cry.
It's odd, this "circling up." It is sacred to me now. My fellow classmates are my sisters (and brothers...there is only one male in the midwifery program that I know of right now and I have not met him, but there are males from my class in the Family Practice Nurse Practitioner program).
There is even a soundtrack that goes with "circling up." To emphasize the diversity amongst us and our future patients they played "It's In Every One of Us" http://www.youtube.com/watch?v=79GD---xXc4 multiple times at "nurse camp." I can't listen/watch this without thinking of being hugely pregnant with Ella (30 weeks to be exact) and having arms around each of my shoulders and swaying back and forth with a room full of sisters/brothers. It's surprisingly familiar and comforting.
Back in June when I first suspected something was wrong I shared my concerns on a private message board with my fellow midwifery students. They circled up and supported me. Then when I received the phone call that confirmed it was indeed cancer, I again shared with them. (To be completely honest, I shared with them before I could get reach my husband). Of course they circled up again. Many of these people are people I have never even met, but the ones that I have went above and beyond.
One of my classmates sent me multiple private messages each day for the first week to cheer me up and cheer me on. Another has texted, called, listened every step of the way. She has even helped me study (despite me being possibly the worse study buddy ever) via Skype. Many of the comments on my blog or facebook pages are from my classmates. Even more classmates have sent me private messages, emails and snail mail cards of support.
The last few days I have finally started telling the faculty what is going on in case I need to step down from full time to part time or take a break (though I do not plan on doing any of the above). Each time I've told a faculty member I've realized how well supported I have been by my fellow classmates and what a wonderful sense of community we have. I think they should be proud of what they have created in us. Community and tradition are very important to Frontier, but I never expected this would become such an integral part of my own support system.
Thank you for "circling up" and supporting me. I look forward to returning the favor. I love you!
- C – Compassion
- I – Innovation
- R – Reflection
- C – Community
- L – Legacy
- E – Excellence
- U – Uniqueness
- P – Primary Care
When I attended Frontier Bound in May of last year we were told that one of the reasons for physically attending an orientation session was to meet our community of fellow students. We did "circle up" at the end of each day and we were told that after we left orientation we would experience the extended community of Frontier "circling up" to support each other in different ways.
This continued for other large storms, faculty receiving awards or publication, DNP (Doctor of Nursing Practice) candidates successfully completing their programs. On a smaller scale the students from our specific orientation class started private Facebook groups to support each other and then we broke apart into other groups for specific classes and interests. There is even a group that specifically supports each others weight loss efforts.
When we attend conferences the Frontier students find each other and circle up. I was not convinced that I wanted to participate in "circling up" outside of the sacred grounds of our "nurse camp" located in the mountains of Hyden, Kentucky, but I have and each time it makes me cry.
It's odd, this "circling up." It is sacred to me now. My fellow classmates are my sisters (and brothers...there is only one male in the midwifery program that I know of right now and I have not met him, but there are males from my class in the Family Practice Nurse Practitioner program).
There is even a soundtrack that goes with "circling up." To emphasize the diversity amongst us and our future patients they played "It's In Every One of Us" http://www.youtube.com/watch?v=79GD---xXc4 multiple times at "nurse camp." I can't listen/watch this without thinking of being hugely pregnant with Ella (30 weeks to be exact) and having arms around each of my shoulders and swaying back and forth with a room full of sisters/brothers. It's surprisingly familiar and comforting.
Back in June when I first suspected something was wrong I shared my concerns on a private message board with my fellow midwifery students. They circled up and supported me. Then when I received the phone call that confirmed it was indeed cancer, I again shared with them. (To be completely honest, I shared with them before I could get reach my husband). Of course they circled up again. Many of these people are people I have never even met, but the ones that I have went above and beyond.
One of my classmates sent me multiple private messages each day for the first week to cheer me up and cheer me on. Another has texted, called, listened every step of the way. She has even helped me study (despite me being possibly the worse study buddy ever) via Skype. Many of the comments on my blog or facebook pages are from my classmates. Even more classmates have sent me private messages, emails and snail mail cards of support.
The last few days I have finally started telling the faculty what is going on in case I need to step down from full time to part time or take a break (though I do not plan on doing any of the above). Each time I've told a faculty member I've realized how well supported I have been by my fellow classmates and what a wonderful sense of community we have. I think they should be proud of what they have created in us. Community and tradition are very important to Frontier, but I never expected this would become such an integral part of my own support system.
 | |
| Not "circling up" in this picture but these are my fellow class 88 midwife students |
Thank you for "circling up" and supporting me. I look forward to returning the favor. I love you!
Sunday, August 12, 2012
Sunday
So today we all woke up feeling miserable. Geoff has had a lingering cold for about a week now and it seems it spread to the rest of us. I can't speak for everyone else but I ache everywhere, have a semi-sore throat, runny nose and I just want to sleep.
I feel terrible that we visited my grandparents yesterday though I'm glad that I tried to keep the kids from touching anyone too much because I suspected this may happen. I swear every time I talk about visiting my grandparents our kids get sick.
I also feel bad because one of my best friends and her family were coming to visit today and I didn't realize how crummy everyone was feeling until they were already on their way. I apologized profusely when they got here but they didn't seem too concerned.
I'm so glad they came. It was short and sweet. The kids all had a few hours to play together, though E was feeling so miserable he barely played (I did manage to capture a photo of the two boys playing backwards teeter-totter...you have no idea how hard it is to capture photos of 3 year old boys).
Our friends were kind enough to make lunch for us too. Our kids played after lunch until it was apparent that nap-time was overdue. When they left E asked to go to bed and put himself down for a nap. Ella was content to take a nap with me and Geoff did some errands. All in all it was a perfect Sunday despite the colds.
I feel terrible that we visited my grandparents yesterday though I'm glad that I tried to keep the kids from touching anyone too much because I suspected this may happen. I swear every time I talk about visiting my grandparents our kids get sick.
I also feel bad because one of my best friends and her family were coming to visit today and I didn't realize how crummy everyone was feeling until they were already on their way. I apologized profusely when they got here but they didn't seem too concerned.
I'm so glad they came. It was short and sweet. The kids all had a few hours to play together, though E was feeling so miserable he barely played (I did manage to capture a photo of the two boys playing backwards teeter-totter...you have no idea how hard it is to capture photos of 3 year old boys).
Our friends were kind enough to make lunch for us too. Our kids played after lunch until it was apparent that nap-time was overdue. When they left E asked to go to bed and put himself down for a nap. Ella was content to take a nap with me and Geoff did some errands. All in all it was a perfect Sunday despite the colds.
C is Chippewa Falls
In honor of my impending treatment, we decided to shirk all responsibilities today and run off to Northwestern, WI. When we lived in the Twin Cities, we would drive through Eau Claire/Chippewa Falls on our way to visit my parents in Eastern, WI. This worked out perfectly for us because my grandparents (and many aunts, uncles, and cousins) all live in this area.
Then we moved to Madison, got married, and started our own family. We had great intentions but we found that we just don't get up north to visit as often as we used to. In the past year, since Ella was born, we have only been to Chippewa twice. Once was passing through on the way home from the Twin Cities with two sick kids and we skipped exposing my elderly grandparents.
My grandfather had his 94th birthday in early July and we weren't able to make it to his party. Word on the street was he wasn't his normal chatty self so we vowed that we would get over to visit soon. Then we found out about my cancer and it became even more of a priority for us.
We decided we wouldn't tell them about the cancer. If they found out, they found out, but we didn't want to worry them. Of course, my grandmother knew. My grandmother always knows...
I don't know if my grandfather knows, because we barely saw him. When we first arrived he was too tired to get out of bed. This both saddened and concerned us, but we were warned that this is not the first time.
I snuck into my grandparents room and gave him a peck on the cheek and whispered "I love you grandpa." He was sleeping on his side, facing away from me, but he turned back to look at me, smiled and wiggled a finger at me in acknowledgement.
Eventually, we left to go visit with one of my cousins. When we came back to my grandparent's house, my grandfather had just been convinced to get up. He stayed up long enough to get a few pictures and then he snuck back to bed.
It broke my heart to see my grandfather so tired and weak. He never really talked with us other than telling me he just getting "too old" and that I have "really great kids." This isn't the grandfather I know.
I watched my grandmother to see what her reaction to everything was. This is when I realized that she was covering for him and not just once. At one point I asked if I could get him an Ensure and my grandmother told me that she thought that was a great idea. Then she said something to him about and he said "oh, I just drank half of one, remember?" and she turned to me and said "oh, that's right, he did."
She muttered a couple times that she thinks "we're losing him." I didn't know what to say. You would think with all the mortality and comfort discussions we've endured in the past few weeks I would have a clue but I didn't, so I gave her a hug (honestly I suck at therapeutic communication sometimes).
I asked Geoff if he thought she was covering for him too and we started talking...You see, Geoff and I have always had a deal. To explain our deal you need to know a little about the song, "The Luckiest" by Ben Folds. In this song there is a verse that goes:
Next door, there's an old man who lived to his 90's
And one day, passed away in his sleep
And his wife, she stayed for a couple of days
And passed away
I'm sorry, I know that's a strange way
To tell you that I know we belong
That I know that I am I am, I am the luckiest
We have had endless ridiculous conversations about this verse. Basically to sum it up, our deal is to live long, full lives and to quietly pass away together. Of natural causes of course. This way neither of us ever has to endure the loss of the other one.
All this cancer stuff has touched on my mortality way too many times in the past few weeks. Early on, Geoff pointed out that we made a deal and that I'm not allowed to go back on it. Seeing my grandparents today made me wonder if my grandparents have a deal and what it is.
I'm glad we took the time to drive to Chippewa today. The kids handled it like champs and the few pictures I got today were priceless. I hope that my grandfather was just having a rough day and I'll make it my priority to visit as much as I can. I can't imagine being 94 years old, but when I get there I'll stay in bed for the day if I want too.
Then we moved to Madison, got married, and started our own family. We had great intentions but we found that we just don't get up north to visit as often as we used to. In the past year, since Ella was born, we have only been to Chippewa twice. Once was passing through on the way home from the Twin Cities with two sick kids and we skipped exposing my elderly grandparents.
My grandfather had his 94th birthday in early July and we weren't able to make it to his party. Word on the street was he wasn't his normal chatty self so we vowed that we would get over to visit soon. Then we found out about my cancer and it became even more of a priority for us.
 |
| A rare moment...E giving Ella a kiss. |
We decided we wouldn't tell them about the cancer. If they found out, they found out, but we didn't want to worry them. Of course, my grandmother knew. My grandmother always knows...
I don't know if my grandfather knows, because we barely saw him. When we first arrived he was too tired to get out of bed. This both saddened and concerned us, but we were warned that this is not the first time.
I snuck into my grandparents room and gave him a peck on the cheek and whispered "I love you grandpa." He was sleeping on his side, facing away from me, but he turned back to look at me, smiled and wiggled a finger at me in acknowledgement.
 |
| E and Great-Grandma. |
 |
| Ella and Great-Grandma. |
Eventually, we left to go visit with one of my cousins. When we came back to my grandparent's house, my grandfather had just been convinced to get up. He stayed up long enough to get a few pictures and then he snuck back to bed.
 |
| E and Ella with Great-Grandma and Grandpa. |
 |
| E really enjoyed playing quietly by Great-Grandpa. |
It broke my heart to see my grandfather so tired and weak. He never really talked with us other than telling me he just getting "too old" and that I have "really great kids." This isn't the grandfather I know.
I watched my grandmother to see what her reaction to everything was. This is when I realized that she was covering for him and not just once. At one point I asked if I could get him an Ensure and my grandmother told me that she thought that was a great idea. Then she said something to him about and he said "oh, I just drank half of one, remember?" and she turned to me and said "oh, that's right, he did."
She muttered a couple times that she thinks "we're losing him." I didn't know what to say. You would think with all the mortality and comfort discussions we've endured in the past few weeks I would have a clue but I didn't, so I gave her a hug (honestly I suck at therapeutic communication sometimes).
I asked Geoff if he thought she was covering for him too and we started talking...You see, Geoff and I have always had a deal. To explain our deal you need to know a little about the song, "The Luckiest" by Ben Folds. In this song there is a verse that goes:
Next door, there's an old man who lived to his 90's
And one day, passed away in his sleep
And his wife, she stayed for a couple of days
And passed away
I'm sorry, I know that's a strange way
To tell you that I know we belong
That I know that I am I am, I am the luckiest
We have had endless ridiculous conversations about this verse. Basically to sum it up, our deal is to live long, full lives and to quietly pass away together. Of natural causes of course. This way neither of us ever has to endure the loss of the other one.
All this cancer stuff has touched on my mortality way too many times in the past few weeks. Early on, Geoff pointed out that we made a deal and that I'm not allowed to go back on it. Seeing my grandparents today made me wonder if my grandparents have a deal and what it is.
I'm glad we took the time to drive to Chippewa today. The kids handled it like champs and the few pictures I got today were priceless. I hope that my grandfather was just having a rough day and I'll make it my priority to visit as much as I can. I can't imagine being 94 years old, but when I get there I'll stay in bed for the day if I want too.
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