As I mentioned in my previous post, waiting for my scan today was nerve racking. I did manage to sleep last night, but woke up at 4am to go to the bathroom. In reality this was perfect timing because I was NPO (nothing per oral...aka no food) for 6 hours before my scan. Just in case I woke up before my food cutoff I had put some graham crackers next to the bed (next time I will go with something more sustaining such as almonds...but whatever, I was pleased I had even thought of it). I took the opportunity to eat a few crackers and drink some water and then went back to sleep.
The advantage of having a later scan was that we could sleep in until our kiddos woke us up. The disadvantage is that I had to help everyone with their breakfasts while I was hungry and starving. I even ended up making a quick run to the grocery store which seemed a little unfair considering how hungry I was.
Then Geoff and I left for UW. I'm not sure I even mentioned it here, but I did end up getting my scan scheduled in the scanner that I like better. I already had multiple reasons for liking that scanner better, including the people. They are so nice. As soon as I arrived I was taken down to the dungeon (seriously the scanner is below ground). I had an IV placed and I was given the radioactive isotope that is used for the scan. Then I sat in a darkened room for a half hour. I was pretty anxious but I used the opportunity to pray and meditate and actually fell asleep. I woke up just as the tech came in to tell me it was time to wake up and drink the contrast for my CT scan.
All my paperwork said I was having and PET/CT and I just ignored the CT scan part, but whatever, I didn't really care. It's all done in the same scanner. I normally hate drinking contrast and I can't say today was much more pleasant, but I was so hungry I initially welcomed the idea that I got to have something. Also, I didn't have to drink liters of the crud, so I can't really complain. I had about twenty minutes to drink nearly a liter, then I had a quick bathroom trip and it was off to the scanner for my PET scan.
The scan took "24 minutes." As it was going I figured out that I moved every 3 minutes so apparently my body was divided in 8 sections...I might have been 7, I'm not sure...initially there were a few full body scans that were quick. It started with my lower body (this is pretty normal) and my head outside of the far side of the scanner and eventually my head was in the scanner and my feet were outside.
Again, I have many reasons I like this scanner better...I had a few bad experiences in the other scanner, including my last PET scan...the "bad" one. Also, they play music and I have options including Pandora, Satellite radio, cds in the good scanner...I chose satellite and they put on "today's best hits." Not my favorite, but definitely better than nothing. At about 15 minutes in, "What doesn't kill you" by Kelly Clarkson started playing. I had never heard the song before a friend put this video http://www.youtube.com/watch?v=BaQdwTsVtCY on my Facebook page awhile back, but ever since it has been something I relate strongly to. I immediately felt it was a good omen. Really. I let out a deep sigh, cried a little, and then just chilled for the remainder of the scan.
After my PET was done the techs were nice enough to let me sneak off for another quick bathroom break. I asked how long the CT scan was going to take and I was told a total of 10 minutes. That was about right. The longest part was getting my IV hooked up for contrast. Then they lined me up with the lasers and I had a few "Breath in. Hold your breath. Breathe out." (mostly said by a very mechanical sounding voice) commands while the scanner took images of my abdomen. A few minutes in I was told it was time for the contrast. As an old pro they knew I knew this meant I would have a warm flush sensation that they usually describe as feeling like you "peed your pants." Overall it's a fairly good description, but it doesn't make me worry that I peed my pants. Actually, I was glad for the warm flush sensation today because my arms were exposed and held over my head during all the scans and I was kind of sleepy and cool at this point.
When I was done, I couldn't resist asking the techs if they see the images. Ok, I know they do, and I know they can't tell me anything (I acknowledged this), but I was just curious to what extent. What I was really curious about is do they see this scan in comparison to my last scan and they don't. I debated asking, but when the techs asked me how old my kids were and then kind of looked down when I told them the ages, I decided I would ask. I threw out that my last scan really sucked and I saw one of their faces light up. I'm not sure she realized that I was paying so much attention, but maybe she did. I'm sure I'm not the first.
By the time I was done with my scans and got back upstairs to the waiting room to reunite with Geoff I was already 10 minutes late for my oncology appointment. We hurried over and checked in. I was taken back to a room pretty quickly and asked the required million questions. Then the medical assistant took my vitals. She took my BP and told me it was 150/70. I had watched while she took it and I'm pretty good at guessing/seeing what it is and that was not the reading I got. Also, I have only had a blood pressure that high once in my life and I was very much in the middle of a contraction at the end of giving birth to E. She tried again. I read 108/60. She told me 150/60. Personally, I still think she was wrong and am kind of annoyed that her reading is in my chart, but whatever, some things I just need to let go. Alright, I'll admit it. I really wanted to take it myself...but I'm letting it go, now. I swear.
I played Candy Crush on the ipad for a few minutes and our PA came in to tell us the results weren't back yet, but she would let us know as soon as she heard something. They were doing a "stat read" on my scan. Maybe 20 minutes later she came back and Geoff and I knew immediately it was good.
The final results weren't in yet, but according to the preliminary results, there was no new growth and all the existing sites had regressed. PET scans look for areas of hypermetabolic activity which shows up as bright white areas. I had three lymph node sites in my neck originally that were very hypermetabolic, but now only one was glowing and even that was significantly less. The PA tried to explain the significance of all of this to us, and we asked if this means the cancer cells are dying. Her answer? "Basically, yes."
So this means I will continue on my current treatment plan. I leave tomorrow for my conference in Nashville as planned and I will come back on June 3rd (late) so that I am home for chemo on the 4th, 5th, and 6th. I will have another oncology appointment as usual on the 4th and we will talk more about the scan because we will have the final results and then in a few weeks I have an appointment with my actual oncologist and my beloved NP (assuming she is willing to leave her beautiful babe and come back to work).
In the meantime, I'm going to keep working on making better choices in my life and fighting harder. I am more determined than ever that I can do this and there are so many more things for me to try. For now though, I need to finish packing.
Wednesday, May 29, 2013
Monday, May 27, 2013
Pins and Needles
In about 12 hours I have a PET scan to see how well my chemo regimen is working. We've tried really hard to not let it affect us, but I can't lie, I am on pins and needles and dreading tomorrow. I've never liked scans, but I really never expected such bad news after my last scan and now that I've had a taste of what that is like...
I have had so many people tell me not to worry, including myself...but while that is great advice, it is impossible to some degree. Instead we have stayed busy. I haven't written much lately because I have stayed so busy.
Last week I started my clinical rotation. I had three office days with the midwives and I loved it. The very first thing I got to do was find a baby's heartbeat for a pregnant women who hadn't heard her baby's heartbeat before. I just kept thinking how lucky I was to be there for such a sweet moment. I enjoyed my clinical days immensely. I felt good and didn't feel like I had any problems keeping up...there were maybe one or two appointments a day that I would drag through, but overall, I was pleased. I would come home each day excited to enter my patients I had seen for the day into our school's tracking system and then I would crash. Each day. I had no idea how exhausted I really was...The first day I actually fell asleep on the floor in E's room, before bedtime. Thank goodness my husband is supportive!
We also celebrated E's 4th birthday last Wednesday and again this past Sunday with a party. It was everything I wanted it to be for him and he was very pleased. We had a lovely mix of friends and family and it was perfect.
Today I spent a few hours at the barn with Aggie (our horse). I even got to ride a little and I really enjoyed myself. After I came home, I showered and took a much needed nap.
Really, I have tried to keep busy. Almost too busy. Sometimes I do worry I'm overdoing it. Worse yet, I have things I need to do and haven't done, but I'm trying really hard to keep myself distracted from thinking about this scan tomorrow. My mind has taken the liberty of considering all possible scenarios from the cancer is completely gone to chemo is pointless and I am now palliative. Overall, I just have to keep telling it to be quiet, that I feel great, and then redirect.
If how I feel is any indicator, then the scan will go well. I feel much better than when I had my last scan. The one hitch is that I had all these things I was going to change and I've regressed some on the diet, esp. with birthday parties, etc. and I haven't been saving enough energy at the end of the day to meditate...At the same time, I am living my life and I am not forgetting to be appreciative of each and every moment/day/adventure. What else can I do?
So I have my scan tomorrow morning. I wasn't scheduled to find out the results until June 4th because I am going to be out of town from the 29th through the 3rd, but I made it clear that I wasn't ok waiting that long for results, so I have an appointment with the PA tomorrow afternoon. Of course all our family and friends want to know the results so good or bad I will have a post tomorrow.
The way I have understood it, this is still early for the chemo to have done a lot so what we are looking for is the tumors to be the same or regressed some. As long as things haven't grown/spread, we are ok. In all honesty, I want things to have regressed or to be gone, but I have no idea how wishful that is. Regardless that is what I am going to visualize, pray for, and hope for. May as well set my sights on what I really want.
Then, assuming this scan doesn't turn our lives upside down, I am going to Nashville on Wednesday for the American College of Nurse Midwives conference. A friend from school is meeting me in Illinois and we are driving together. Another friend from school found a gorgeous home that a bunch of us are all renting together. It ended up being very cheap and a fun way for all of us to spend time together and go the convention. I'm really excited and seeing this as my reward at the end of the tunnel. We are staying through the following Monday and then driving home so I can get back in time for Tuesday chemo.
In the meantime I (we) are accepting of any and all prayers, thoughts, well wishes, good vibes, etc.
I have had so many people tell me not to worry, including myself...but while that is great advice, it is impossible to some degree. Instead we have stayed busy. I haven't written much lately because I have stayed so busy.
Last week I started my clinical rotation. I had three office days with the midwives and I loved it. The very first thing I got to do was find a baby's heartbeat for a pregnant women who hadn't heard her baby's heartbeat before. I just kept thinking how lucky I was to be there for such a sweet moment. I enjoyed my clinical days immensely. I felt good and didn't feel like I had any problems keeping up...there were maybe one or two appointments a day that I would drag through, but overall, I was pleased. I would come home each day excited to enter my patients I had seen for the day into our school's tracking system and then I would crash. Each day. I had no idea how exhausted I really was...The first day I actually fell asleep on the floor in E's room, before bedtime. Thank goodness my husband is supportive!
We also celebrated E's 4th birthday last Wednesday and again this past Sunday with a party. It was everything I wanted it to be for him and he was very pleased. We had a lovely mix of friends and family and it was perfect.
Today I spent a few hours at the barn with Aggie (our horse). I even got to ride a little and I really enjoyed myself. After I came home, I showered and took a much needed nap.
Really, I have tried to keep busy. Almost too busy. Sometimes I do worry I'm overdoing it. Worse yet, I have things I need to do and haven't done, but I'm trying really hard to keep myself distracted from thinking about this scan tomorrow. My mind has taken the liberty of considering all possible scenarios from the cancer is completely gone to chemo is pointless and I am now palliative. Overall, I just have to keep telling it to be quiet, that I feel great, and then redirect.
If how I feel is any indicator, then the scan will go well. I feel much better than when I had my last scan. The one hitch is that I had all these things I was going to change and I've regressed some on the diet, esp. with birthday parties, etc. and I haven't been saving enough energy at the end of the day to meditate...At the same time, I am living my life and I am not forgetting to be appreciative of each and every moment/day/adventure. What else can I do?
So I have my scan tomorrow morning. I wasn't scheduled to find out the results until June 4th because I am going to be out of town from the 29th through the 3rd, but I made it clear that I wasn't ok waiting that long for results, so I have an appointment with the PA tomorrow afternoon. Of course all our family and friends want to know the results so good or bad I will have a post tomorrow.
The way I have understood it, this is still early for the chemo to have done a lot so what we are looking for is the tumors to be the same or regressed some. As long as things haven't grown/spread, we are ok. In all honesty, I want things to have regressed or to be gone, but I have no idea how wishful that is. Regardless that is what I am going to visualize, pray for, and hope for. May as well set my sights on what I really want.
Then, assuming this scan doesn't turn our lives upside down, I am going to Nashville on Wednesday for the American College of Nurse Midwives conference. A friend from school is meeting me in Illinois and we are driving together. Another friend from school found a gorgeous home that a bunch of us are all renting together. It ended up being very cheap and a fun way for all of us to spend time together and go the convention. I'm really excited and seeing this as my reward at the end of the tunnel. We are staying through the following Monday and then driving home so I can get back in time for Tuesday chemo.
In the meantime I (we) are accepting of any and all prayers, thoughts, well wishes, good vibes, etc.
Wednesday, May 22, 2013
Four years ago
4 years ago to this minute I was not sleeping either. I had been a mother for 3 hours and 15 minutes and was too enamored to sleep. Geoff and I stayed up staring at E for nearly 36 hours. We finally fell asleep right before the midwife came to discharge us...then she couldn't wake either of us.
Funny how things work out. 4 years later and I'm even more in love with that little guy. I wasn't sure that was possible, but it is. I stayed up late making cake pops for his preschool class and doing invites to his last minute birthday party and making a crepe paper blockade for his door...essentials.
Alright, they aren't essentials, but he only gets one 4th birthday and even though I (we) snuck in to his room to hug him and wish him Happy Birthday at exactly 12:30 and promise him that I would be here for every birthday to come, I have to make sure that this birthday is everything "I" would want it to be. It's hard to let go of the fear that I won't be here for his 5th or his 6th...It's not something any mom is supposed to have to face. Yet, I do.
I have my next PET scan on Tuesday the 28th. Currently my appointment to find out results isn't until the 4th, but I have already started calling and leaving messages making it known that I want my results that day. In reality, I wish I had my results now, so I could worry less.
I don't let the worry consume me. There is no point. I try to minimize it as much as possible, but it is impossible to make it go away. I've said it before and I'll say it again, I have so much to live for...including one 4 year old little (big in his world) boy.
These birthdays are hard for me because they represent so much of what I'm here for and so much of what I'm afraid to loose. E's birthday is particularly significant to me because his is my first. His birth is when I really became a mom. The moment I first saw him, it was like a switch was turned within me and I knew things would never be the same again (and they haven't been).
I never expected his fourth birthday to be an overly big deal for me, but it is. Everything is. Geoff and I were talking and even though we know it doesn't really work that E will remember today and not yesterday, four seems to be when we both have more concrete memories...In other words, E is now old enough to remember me.
It's hard to think about all of this, but it's what I think about. It hurts and I really hope I'm thinking about all of it for nothing. Really. I mean I promised him that I would be here for the rest of his birthdays so I have to be...I just wish it was that easy.
In the meantime, I am here. I am doing great and I plan to celebrate every minute I can today. I plan to spoil my little guy with love and read as many books as he wants and whatever else I can do to make him happy. Those are the things I can control and so I will.
Funny how things work out. 4 years later and I'm even more in love with that little guy. I wasn't sure that was possible, but it is. I stayed up late making cake pops for his preschool class and doing invites to his last minute birthday party and making a crepe paper blockade for his door...essentials.
Alright, they aren't essentials, but he only gets one 4th birthday and even though I (we) snuck in to his room to hug him and wish him Happy Birthday at exactly 12:30 and promise him that I would be here for every birthday to come, I have to make sure that this birthday is everything "I" would want it to be. It's hard to let go of the fear that I won't be here for his 5th or his 6th...It's not something any mom is supposed to have to face. Yet, I do.
I have my next PET scan on Tuesday the 28th. Currently my appointment to find out results isn't until the 4th, but I have already started calling and leaving messages making it known that I want my results that day. In reality, I wish I had my results now, so I could worry less.
I don't let the worry consume me. There is no point. I try to minimize it as much as possible, but it is impossible to make it go away. I've said it before and I'll say it again, I have so much to live for...including one 4 year old little (big in his world) boy.
These birthdays are hard for me because they represent so much of what I'm here for and so much of what I'm afraid to loose. E's birthday is particularly significant to me because his is my first. His birth is when I really became a mom. The moment I first saw him, it was like a switch was turned within me and I knew things would never be the same again (and they haven't been).
I never expected his fourth birthday to be an overly big deal for me, but it is. Everything is. Geoff and I were talking and even though we know it doesn't really work that E will remember today and not yesterday, four seems to be when we both have more concrete memories...In other words, E is now old enough to remember me.
It's hard to think about all of this, but it's what I think about. It hurts and I really hope I'm thinking about all of it for nothing. Really. I mean I promised him that I would be here for the rest of his birthdays so I have to be...I just wish it was that easy.
In the meantime, I am here. I am doing great and I plan to celebrate every minute I can today. I plan to spoil my little guy with love and read as many books as he wants and whatever else I can do to make him happy. Those are the things I can control and so I will.
Tuesday, May 14, 2013
Chemo Day
Today was long...
I went to bed early "for me" last night, but it wasn't early enough for a 5 something am wake-up for something that I try to tell myself I want to do, but I really don't. In other words, I did not get up as early as I was supposed to. Then I decided it was stupid for Geoff to drive me to UW and then have to drop off the kids, I wanted to go to, so I was late for my scheduled time. Everyone was nice about it and no one says anything, but inwardly I feel guilty and bad.
After complaining yesterday about the lack of consistency in my care lately, today's theme was consistency. When we arrived we immediately saw our favorite valet who went out of his way to say "hi" to both of us. Then we went to check in and everyone recognized us. As I was waiting to have my labs drawn one of the phlebotomists walked across the waiting room and said "Hi Ginny! How are you today?" Then a few minutes later we were waiting for my gyn-onc appointment and one of the MA's/NA's came out in the waiting room to get another pt and saw me sitting around the corner and said "Hi Ginny (I really didn't know she knew my name)."
My appointment went well and we had the same fellow as we had last time. We both think he is really nice, so that was good. Then the attending we met was someone new, but I think I've talked with her on the phone before and she was amazing! She was patient and understanding as I pleaded my case for requesting one specific area for my next PET scan vs. the other.
If you are wondering why I am being "that" patient it is because the first area I had a PET scan in they were really nice and talked to me throughout my scan. They offered my choice in music. They gave me chances to relax and honestly for the hour I have to sit by myself pre-scan they made me really comfortable with pillows and warm blankets. All of this is opposed to sitting in a little area with a blanket in a recliner that didn't really recline and being told to not move, not look around, etc. Then it was off to the same scanner where I had the original radiation mapping CT with the traumatizing vaginal probe and tattooing (if you missed this and want to read more check out Informed consent not uniformed compliance ). I briefly explained this situation and that I was slightly traumatized when my last PET scan turned out to be in the same scanner. Of course, I had to add that scan was the bad scan that showed my mets, so I didn't want to go back for that reason either. I didn't add that they never talked to me, or offered me music, or gave me a chance to move in nearly an hour. I know I probably sounded crazy and high maintenance, but the attending took it all in stride and seemed to genuinely understand and appreciate that I was advocating for myself.
The crummy part is since I had my last scan in the "good" scanner the hospital has made guidelines and apparently my BMI is too high for the "good" scanner. No one really seemed to know about this except the scheduler and everyone thought this was ridiculous. I know I'm overweight, but I'm not that overweight. As Geoff pointed out BMI is crummy way to manage weight restrictions on a scanner since he technically has a lower BMI than me, yet weighs a good deal more than me. Anyway, they were going to try to work it so I could still have the "good" scanner and for me, that was enough. I felt heard and I appreciated that. Really, that is all I've wanted all this time. My NP puts up with my crazy requests and understands the need to ask for things that I can control or will give me some small piece of comfort. Scans can be terrifying things and she understands that it might be better for me if I'm in an environment that isn't "scary" to me. Today I felt like other people got that too.
When we were done talking with the attending and fellow, we were told the PA wanted to say "hi" too. A few minutes later someone knocked on the door and it was one of the social workers. Geoff had apparently called her yesterday to talk about financial options because even though we are doing ok, it is hard. Yesterday I talked more with our mortgage company about their financial assistance program and found out that any of their programs will hurt our credit because they are deemed "partial payments." None of this was disclosed to me before and I haven't consented to anything, but I have a really hard time agreeing to willingly take a credit hit. That seems so irresponsible to me. Of course I started crying to Geoff, so he came up with other options such as calling the social worker.
She had multiple helpful options to take the pressure off here or there. Nothing that was going to pay our mortgage, but definitely things that might help pay a smaller bill or two and could add up. She was really nice and was also going to look into options for the kiddos and get back to us.
Finally we did see the PA. She is the one person that both of us have felt comfortable calling the last few months with all of our questions. We worry that we are bothering her, but it felt nice that she requested to see us today, instead of us bugging her. She wanted to hear about "vagina camp" and what I learned. She talked with us about home births and a mutual midwife friend. We ended up giving her the quick Ella birth story and she was surprised that I didn't need a hysterectomy which resulted in me asking the ever burning question in my mind..."would they have taken my cervix, thereby possibly eliminating all of this?" Her answer? "yes." Geoff and I both just looked at each other and shrugged. After we left he said something about that being something else to stew on and I replied that I have given this a lot of thought. I was always aware that may have been the possibility, but there is nothing we can do about it now, there was no way to predict the future, and honestly, I had a whole year where I thought I was going to be able to have another child. That was happiness for me right there. It would have been horrible to have a newborn and be mourning the loss of my fertility and healing from a major surgery. So instead it is what it is, and for whatever reason, things were meant to happen this way. I really do believe that.
Anyway, after all that we went upstairs for chemo. Again we were recognized by name in the waiting area. Then I had a new nurse today, but she was amazing and I swear she gave me one of the best rooms in the place. I had a comfy chair, a window, and sliding door. This was a good thing because chemo took FOREVER today. I have a great IV but I needed potassium supplementation and it burned. At one point they had my IV fluids turned down to a 100 ml/hr. I was getting a liter or 1000 ml so that would have meant it would take 10 hours, and I wasn't even close to starting my chemo yet. Needless to say we found ways to turn it back up and make it better, but it was nearly 5 pm when I finally left the chemo infusion center. I should have told them to leave my cubicle with my blanket and pillow so I could "reserve" it for tomorrow too, but it doesn't really work like that.
After chemo we picked up the kids and the dogs (2 of the 3...Fern was kicked out of doggy daycare on my birthday for having a not so friendly attitude...behavior appointments are in her future to see if we can help her be comfortable at doggy daycare again or maybe she'll just be a "stay at home dog"). Then I came home and slept all evening. It's 10:45 and I still haven't had dinner and I'm not sure I want to. Geoff is currently on a sprite, applesauce, cereal, bread, and sherbet run for me. Something out of that will probably appeal, and he made me chicken noodle soup earlier...We'll see. Then it will be back to bed so we can do the abridged version tomorrow.
I went to bed early "for me" last night, but it wasn't early enough for a 5 something am wake-up for something that I try to tell myself I want to do, but I really don't. In other words, I did not get up as early as I was supposed to. Then I decided it was stupid for Geoff to drive me to UW and then have to drop off the kids, I wanted to go to, so I was late for my scheduled time. Everyone was nice about it and no one says anything, but inwardly I feel guilty and bad.
After complaining yesterday about the lack of consistency in my care lately, today's theme was consistency. When we arrived we immediately saw our favorite valet who went out of his way to say "hi" to both of us. Then we went to check in and everyone recognized us. As I was waiting to have my labs drawn one of the phlebotomists walked across the waiting room and said "Hi Ginny! How are you today?" Then a few minutes later we were waiting for my gyn-onc appointment and one of the MA's/NA's came out in the waiting room to get another pt and saw me sitting around the corner and said "Hi Ginny (I really didn't know she knew my name)."
My appointment went well and we had the same fellow as we had last time. We both think he is really nice, so that was good. Then the attending we met was someone new, but I think I've talked with her on the phone before and she was amazing! She was patient and understanding as I pleaded my case for requesting one specific area for my next PET scan vs. the other.
If you are wondering why I am being "that" patient it is because the first area I had a PET scan in they were really nice and talked to me throughout my scan. They offered my choice in music. They gave me chances to relax and honestly for the hour I have to sit by myself pre-scan they made me really comfortable with pillows and warm blankets. All of this is opposed to sitting in a little area with a blanket in a recliner that didn't really recline and being told to not move, not look around, etc. Then it was off to the same scanner where I had the original radiation mapping CT with the traumatizing vaginal probe and tattooing (if you missed this and want to read more check out Informed consent not uniformed compliance ). I briefly explained this situation and that I was slightly traumatized when my last PET scan turned out to be in the same scanner. Of course, I had to add that scan was the bad scan that showed my mets, so I didn't want to go back for that reason either. I didn't add that they never talked to me, or offered me music, or gave me a chance to move in nearly an hour. I know I probably sounded crazy and high maintenance, but the attending took it all in stride and seemed to genuinely understand and appreciate that I was advocating for myself.
The crummy part is since I had my last scan in the "good" scanner the hospital has made guidelines and apparently my BMI is too high for the "good" scanner. No one really seemed to know about this except the scheduler and everyone thought this was ridiculous. I know I'm overweight, but I'm not that overweight. As Geoff pointed out BMI is crummy way to manage weight restrictions on a scanner since he technically has a lower BMI than me, yet weighs a good deal more than me. Anyway, they were going to try to work it so I could still have the "good" scanner and for me, that was enough. I felt heard and I appreciated that. Really, that is all I've wanted all this time. My NP puts up with my crazy requests and understands the need to ask for things that I can control or will give me some small piece of comfort. Scans can be terrifying things and she understands that it might be better for me if I'm in an environment that isn't "scary" to me. Today I felt like other people got that too.
When we were done talking with the attending and fellow, we were told the PA wanted to say "hi" too. A few minutes later someone knocked on the door and it was one of the social workers. Geoff had apparently called her yesterday to talk about financial options because even though we are doing ok, it is hard. Yesterday I talked more with our mortgage company about their financial assistance program and found out that any of their programs will hurt our credit because they are deemed "partial payments." None of this was disclosed to me before and I haven't consented to anything, but I have a really hard time agreeing to willingly take a credit hit. That seems so irresponsible to me. Of course I started crying to Geoff, so he came up with other options such as calling the social worker.
She had multiple helpful options to take the pressure off here or there. Nothing that was going to pay our mortgage, but definitely things that might help pay a smaller bill or two and could add up. She was really nice and was also going to look into options for the kiddos and get back to us.
Finally we did see the PA. She is the one person that both of us have felt comfortable calling the last few months with all of our questions. We worry that we are bothering her, but it felt nice that she requested to see us today, instead of us bugging her. She wanted to hear about "vagina camp" and what I learned. She talked with us about home births and a mutual midwife friend. We ended up giving her the quick Ella birth story and she was surprised that I didn't need a hysterectomy which resulted in me asking the ever burning question in my mind..."would they have taken my cervix, thereby possibly eliminating all of this?" Her answer? "yes." Geoff and I both just looked at each other and shrugged. After we left he said something about that being something else to stew on and I replied that I have given this a lot of thought. I was always aware that may have been the possibility, but there is nothing we can do about it now, there was no way to predict the future, and honestly, I had a whole year where I thought I was going to be able to have another child. That was happiness for me right there. It would have been horrible to have a newborn and be mourning the loss of my fertility and healing from a major surgery. So instead it is what it is, and for whatever reason, things were meant to happen this way. I really do believe that.
Anyway, after all that we went upstairs for chemo. Again we were recognized by name in the waiting area. Then I had a new nurse today, but she was amazing and I swear she gave me one of the best rooms in the place. I had a comfy chair, a window, and sliding door. This was a good thing because chemo took FOREVER today. I have a great IV but I needed potassium supplementation and it burned. At one point they had my IV fluids turned down to a 100 ml/hr. I was getting a liter or 1000 ml so that would have meant it would take 10 hours, and I wasn't even close to starting my chemo yet. Needless to say we found ways to turn it back up and make it better, but it was nearly 5 pm when I finally left the chemo infusion center. I should have told them to leave my cubicle with my blanket and pillow so I could "reserve" it for tomorrow too, but it doesn't really work like that.
After chemo we picked up the kids and the dogs (2 of the 3...Fern was kicked out of doggy daycare on my birthday for having a not so friendly attitude...behavior appointments are in her future to see if we can help her be comfortable at doggy daycare again or maybe she'll just be a "stay at home dog"). Then I came home and slept all evening. It's 10:45 and I still haven't had dinner and I'm not sure I want to. Geoff is currently on a sprite, applesauce, cereal, bread, and sherbet run for me. Something out of that will probably appeal, and he made me chicken noodle soup earlier...We'll see. Then it will be back to bed so we can do the abridged version tomorrow.
Monday, May 13, 2013
Chemo Round 3
Tomorrow morning I start round 3. Hopefully this will mark the halfway point but we won't really know until I have another scan in the next few weeks...or so was the original plan. Since I haven't seen any of my usual people through this whole process I'm kind of at a loss.
I'm not going to lie, it is really frustrating. My wonderful superhuman NP is still on maternity leave (yay for her and her babe!!!). My gyn-oncologist doesn't work on Tuesdays. I don't see my radiation oncologist right now since I'm not in remission or getting radiation. That also means I don't see the radiation oncology PA. Essentially, I try to see the gyn-oncology PA because she has met me a couple times now, but it's not uncommon to be told the wait is too long for her and to end up with someone new. I have no control over it and it leaves me feeling like I have no one to ask questions of or to help me manage my care in this battle to live.
I've been asked endlessly over the last week and half when I have chemo again and how it works, so here goes. I'll have chemo tomorrow, Wednesday and Thursday, then I will have 7 nights of Neupogen injections, and in about 10 days I'll have labs drawn. Assuming all is well, I'll start it all over again in 3 weeks from tomorrow.
Chemo Tuesdays start early. Usually my mom helps us out since Tuesdays both kids are home with me, but this week she has a funeral to attend so I switched our usual Friday at daycare for tomorrow. I think my labs are scheduled for 7 or 7:30 so all of us will get up and get going, then Geoff will drop me off at UW. Next I will head off to lab while he takes the kiddos to daycare and drops them off. He will then head back to UW and meet up with me with during my pre-chemo oncology appointment or in the chemo waiting room. Usually with waiting times for everything, chemo doesn't actually get started until 10ish. Then I have to get "pre-fluids" which is essentially a whole liter of IV fluids over an hour. Then another half hour of an IV anti-nausea med. When I start my fluids I get a mess of pills including more anti-nausea meds, dexamethasone (a steroid), and Benadryl. I'm a lightweight and usually sound asleep about the time the pre-fluids are done. I wake up for bag changes , bad IVs, and bathroom trips and that's bout it.
Finally I start my first chemo med. That is another liter of IV fluids over an hour. Then the second med, a much smaller bag, and usually that is it. Then it's me dragging my half asleep self out to wait for car and back to daycare to pick up the kids (just in case it's not clear Geoff is doing all the driving, etc.). Sometime, ok often, we stop for bagel or something, but it's a catch 22 because I always run that risk of getting sick and no longer liking whatever we picked up. Anyway, once we have the kiddos it's home to bed/soak in a hot tub.
I generally remain non-functional for the rest of chemo Tuesdays and Geoff is stuck doing it all on his own. Wednesdays and Thursdays are only the anti nausea IV med and the second drug so they are much faster. This is good because I need to be to work to proctor a test at 1 on Wednesday and I'm on my own with the kids Wednesday night as usual. There is a good chance that it will be a "Toy Story" or whatever I can find night. I guess we'll have to see.
I was describing most of this regimen to one of my neighbors tonight and he was appropriately appalled. I assured him it wasn't all bad, and I feel fortunate enough that I qualify for chemo and I'm still getting a chance to fight and win. As we get closer and closer to that next big scan I'm more and more terrified of having the rug pulled out from under me again. I have so much to live for and so much to do...
Sometimes all of it is too weird to me. In many ways life has managed to go on and be relatively normal despite all of this, but it is odd that every three weeks I have to drop everything and half live at UW. A week ago I was in Kentucky. We had just finished our celebration dinner that we have at the end of our "Clinical Bound" week and a blessing-way ceremony (blessing-way ceremonies are tradition for the midwife students at my school as they transition to a new role in their life). In another week, I will probably be in clinical and who knows, maybe even attending my first birth as the "baby catcher" (or whatever you choose to call it). A week after that and I should be at my first big midwife conference for the American College of Nurse-Midwives in Nashville. The hardest part of all this is you might have noticed I no longer say things like "I will be" it's now "I should be" or "I will probably be" because I'm hyper aware of how little control I have over any of these things.
For me to go to Kentucky there was a lot discussions and uncertainty. I didn't get plane tickets until the last minute and even until the day before when I had my labs rechecked nothing seemed certain. The most frustrating part was I scheduled everything so I would fly in at 7:30 am last Wednesday so I could do a Wed, Thurs, Fri chemo schedule as discussed in one of my chemo oncology appointments. In the end I was notified that was not possible and my chemo had to be moved back a week instead. I'm not sure the person I dealt with had any concept of how unnerving the idea of waiting an extra week for chemo is to someone dependent on chemo to live. There was no reassurance, just a firm "we don't do that."
There are so many times through all of this that I'm reminded nothing is certain and I have no control. I'm dependent on people that think they know all about being in my position, but many of them have no idea how many times a day I have to try to tell myself to put on my big girl pants or spin the negative into a positive. There are no guarantees in life, we all know that, but I miss not living with cancer constantly hanging over my head. I miss the days when I never knew if the next stranger I meet is going to be the one that looks at me like I'm as good as dead or tells me "I'm sure you're fine" without knowing any circumstances beyond me having a cancer.
Don't get me wrong, I'm not viewing myself as some sort of victim. I've learned a lot from cancer and in many ways it has made me a better person, but I think I'm ready for it to really go into remission. I want to work towards being one of those people who says they are a one year, or five year, or twenty year, or hell, fifty year, survivor. Yes, I'm definitely ready for that.
Mother's Day
Holidays and milestones take on a whole different meaning when there is that realistic possibility that it might be your last. It's not that any of us really think that this will be my last Mother's Day, but it is impossible to completely tell your brain to be quiet when you know you have stage 4 cancer.
My family is my life and the idea that I won't be here as my kids grow up hurts and scares me more than anything. Really.
I can't imagine growing up without my mom. Those of you who really know us, know that we drive each other nuts at times. At the same time, we both adore each other and rarely go a day without talking.
I expect to have the same relationship with my children. There just is no other option...but sometimes I don't get to make the choices...
So, I got to sleep in today...and I have to be honest, it was really more of a Mother's Day weekend for me. Yesterday we went to a couple knitting shops that we both wanted to check out, but mostly because I was looking for a certain color combination. We also went to a plant sale and ran some other errands, and finally I went to one of my favorite garden centers and bought annuals for myself and my mom (a mother's day tradition for us).
Then today after sleeping in and getting breakfast in bed, we checked out an Estate sale and a cute little pottery/garden shop, and then went to my other favorite Madison garden center. Of course there were a few more plants that needed a good home. I was on a mission to find seeds or a plant of a type of zinnea I saw on Pinterest, but no such luck, so of course I settled for some other options.
I was also spoiled by Geoff and the kids with Dahlias that they bought at the Badger State Dahlia Society plant sale while I was in Kentucky. In addition to all the Dahlias, I was spoiled with multiple daycare/preschool art projects (one unfortunately and tragically broke before making it to me, so E and I are going to attempt to recreate that tomorrow morning before I go to work in the afternoon). I was also given a fully paid (gratuity included) one hour massage by my wonderful husband, in addition to a few fun little surprises such as a scratch off lottery card.
The big surprise of the day though was the gift from the director of E and Ella's daycare. Last week she slipped Geoff a gift bag for me at the end of one of the days. On the top of the bag was a wonderfully sweet card that expressed warm thoughts and Happy Mother's Day wishes, in addition to something about "Hats off to you!" Inside the bag was stuffed full with bandanas, scarves, a pashmina, a floppy gardening type hat, a baseball hat, a stocking hat, and another trendy hat, in addition to a Pizza Hut gift card (she obviously knows our kids love pizza). I was at a complete loss for words. Completely unexpected and it was one of those gifts that just kept going and going and was more and more fun. I have another friend who sent me a package of bandanas and head gear when I donated my hair, and an aunt who sent me a box of hats. I didn't expect any those gifts, but this just blew me away. The kids had a blast going through the bag with me and before I knew it we were having a silly hat party (of course Ella was wearing the flopping gardening style hat).
Another surprise of the weekend was Geoff won a door prize at the plant sale and ended up giving me a $10 gift card to another gardening shop I have never been to. He's been there and says it's fun, so I'm excited to check it out.
It really felt like a decadent weekend. I was spoiled with whatever I wanted for food...well, in theory anyway. We weren't home enough to cook anything elaborate or to go anywhere really fun. So in actuality, it was some Subway and treats today, but still...I loved it.
After mentioning to Geoff yesterday that I would like a pergola on our deck instead of the privacy panels that have always been there, Geoff made it his mission to make me a pergola today. In the end all my garden center shopping took up too much time, but plans are drawn and we have done a scouting trip for price comparison of materials.
At the end of the day I realized I had $10. Kohl's Cash that was due to expire today so I took that and another coupon and headed to one of the stores to take advantage of free shipping and order a picnic table for the kids that we have been debating for a long time. We decided to put that away for Ella's birthday in July, because we were contemplating joining everyone else in our neighborhood and giving in to the trampoline craze for E's birthday on the 22nd.
On his 2nd birthday we rented a bounce house and we were considering doing it again, but we really could only do one or the other and decided if we take care of it the trampoline will give us many years of use, so right now it was the better choice. I checked with one of our neighbors to find out where they had bought theirs and ended up finding it on sale for 50% off through today only, so of course we bought that too. Technically both of these things are "shared" presents but each kid will get one of them on their birthdays in addition to a few other things I have squirreled away over the last year...some of which I am dying to give them!
On the way to Kohl's E saw a carnival in the mall parking lot. Geoff and I both groaned and debated whether this was something we wanted to give into. In the end we both decided it was worth it and took the kiddos to ride the one and only ride they both could ride, the carousal.They were both ecstatic until they were actually on their horses. They have ridden them before, but inevitably one or both always gets scared at some point. Tonight was no exception. It didn't matter though. They were blissfully happy after that one ride and so were we. It was the perfect ending to my day.
I'm excited for my pergola which maybe I'll have next weekend and I had a wonderful Mother's Day, but perhaps the greatest gift of all was knowing that I have great gifts to give to my kids for their birthdays this year. No matter what happens it will be a year of wonderful milestones and hopefully that will just become our pattern...Living each day (esp. important ones) like they could be your last...
(Of course next year it would be nice if we could be with our moms too...but I will see mine tomorrow and Geoff's is moving back to the US in next couple weeks, so soon enough...)
My family is my life and the idea that I won't be here as my kids grow up hurts and scares me more than anything. Really.
I can't imagine growing up without my mom. Those of you who really know us, know that we drive each other nuts at times. At the same time, we both adore each other and rarely go a day without talking.
I expect to have the same relationship with my children. There just is no other option...but sometimes I don't get to make the choices...
So, I got to sleep in today...and I have to be honest, it was really more of a Mother's Day weekend for me. Yesterday we went to a couple knitting shops that we both wanted to check out, but mostly because I was looking for a certain color combination. We also went to a plant sale and ran some other errands, and finally I went to one of my favorite garden centers and bought annuals for myself and my mom (a mother's day tradition for us).
Then today after sleeping in and getting breakfast in bed, we checked out an Estate sale and a cute little pottery/garden shop, and then went to my other favorite Madison garden center. Of course there were a few more plants that needed a good home. I was on a mission to find seeds or a plant of a type of zinnea I saw on Pinterest, but no such luck, so of course I settled for some other options.
I was also spoiled by Geoff and the kids with Dahlias that they bought at the Badger State Dahlia Society plant sale while I was in Kentucky. In addition to all the Dahlias, I was spoiled with multiple daycare/preschool art projects (one unfortunately and tragically broke before making it to me, so E and I are going to attempt to recreate that tomorrow morning before I go to work in the afternoon). I was also given a fully paid (gratuity included) one hour massage by my wonderful husband, in addition to a few fun little surprises such as a scratch off lottery card.
The big surprise of the day though was the gift from the director of E and Ella's daycare. Last week she slipped Geoff a gift bag for me at the end of one of the days. On the top of the bag was a wonderfully sweet card that expressed warm thoughts and Happy Mother's Day wishes, in addition to something about "Hats off to you!" Inside the bag was stuffed full with bandanas, scarves, a pashmina, a floppy gardening type hat, a baseball hat, a stocking hat, and another trendy hat, in addition to a Pizza Hut gift card (she obviously knows our kids love pizza). I was at a complete loss for words. Completely unexpected and it was one of those gifts that just kept going and going and was more and more fun. I have another friend who sent me a package of bandanas and head gear when I donated my hair, and an aunt who sent me a box of hats. I didn't expect any those gifts, but this just blew me away. The kids had a blast going through the bag with me and before I knew it we were having a silly hat party (of course Ella was wearing the flopping gardening style hat).
Another surprise of the weekend was Geoff won a door prize at the plant sale and ended up giving me a $10 gift card to another gardening shop I have never been to. He's been there and says it's fun, so I'm excited to check it out.
It really felt like a decadent weekend. I was spoiled with whatever I wanted for food...well, in theory anyway. We weren't home enough to cook anything elaborate or to go anywhere really fun. So in actuality, it was some Subway and treats today, but still...I loved it.
After mentioning to Geoff yesterday that I would like a pergola on our deck instead of the privacy panels that have always been there, Geoff made it his mission to make me a pergola today. In the end all my garden center shopping took up too much time, but plans are drawn and we have done a scouting trip for price comparison of materials.
At the end of the day I realized I had $10. Kohl's Cash that was due to expire today so I took that and another coupon and headed to one of the stores to take advantage of free shipping and order a picnic table for the kids that we have been debating for a long time. We decided to put that away for Ella's birthday in July, because we were contemplating joining everyone else in our neighborhood and giving in to the trampoline craze for E's birthday on the 22nd.
On his 2nd birthday we rented a bounce house and we were considering doing it again, but we really could only do one or the other and decided if we take care of it the trampoline will give us many years of use, so right now it was the better choice. I checked with one of our neighbors to find out where they had bought theirs and ended up finding it on sale for 50% off through today only, so of course we bought that too. Technically both of these things are "shared" presents but each kid will get one of them on their birthdays in addition to a few other things I have squirreled away over the last year...some of which I am dying to give them!
On the way to Kohl's E saw a carnival in the mall parking lot. Geoff and I both groaned and debated whether this was something we wanted to give into. In the end we both decided it was worth it and took the kiddos to ride the one and only ride they both could ride, the carousal.They were both ecstatic until they were actually on their horses. They have ridden them before, but inevitably one or both always gets scared at some point. Tonight was no exception. It didn't matter though. They were blissfully happy after that one ride and so were we. It was the perfect ending to my day.
I'm excited for my pergola which maybe I'll have next weekend and I had a wonderful Mother's Day, but perhaps the greatest gift of all was knowing that I have great gifts to give to my kids for their birthdays this year. No matter what happens it will be a year of wonderful milestones and hopefully that will just become our pattern...Living each day (esp. important ones) like they could be your last...
(Of course next year it would be nice if we could be with our moms too...but I will see mine tomorrow and Geoff's is moving back to the US in next couple weeks, so soon enough...)
Thursday, May 2, 2013
Vagina Camp
This week I am at what is affectionately known amongst my school peers as "vagina camp" or "pap camp." It is a required part of our training to be nurse-midwives or nurse practitioners (similar but different educational pathways).
In order to attend what is really known as Clinical Bound or CB, we have to be done with didactic portion of our program. Then we attend this week long intensive training of our clinical skills before we start training with preceptors.
While we are here we actually do all the coursework for two full classes. Well, actually we have to do prep work before we come too.
So we are expected to come with the knowledge of how to do a more thorough than you have probably ever had done physical exam. It is broken into parts that we need to know inside and out. The first full day we are here (yesterday) we spend the entire day practicing and getting tips and trying to master our skills. Then on day 2 (today) we test out on our physical exam skills in the morning. We each have partners and we had to sign up for a time slot yesterday. We also are assigned a faculty member.
My partner and I were terrified of our faculty member. To make matters worse stressed by the knowledge that if you fail, you have one chance to retest and if you fail again, you are sent home. No pressure or anything since it would mean new plane tickets and a ride out of here. Have I mentioned that I am literally on the side of a mountain in town so small it doesn't even have a McDonald's? Doesn't McDonalds have a restaurant every 6 blocks in the US?...not here. I think there is a dollar store, a Dairy Queen, a subway and a gas station. There might be a few more things but that is really about it.
Oh ya, assessments...So my test out was for 9:15 this morning. I was allowed 15 minutes to perform whatever random physical assessment combination I drew. If you have time at the end of your assessment you are allowed one minute to look at your note cards to see if you missed anything and that's about it.
So my roommate/partner and I practiced all yesterday until we literally couldn't function anymore. Then we took some time to decompress in the later evening and I got violently ill. I had been nauseated for a few hours and had taken 8 mg Zofran and then I tried some Compazine, but it never had enough time to take effect. A few hours later I felt much better and crawled into bed.
We were back up and practicing in the safety of our room at 6am today. We did go to breakfast and I took a quick shower but other than that we practiced right up until 9am. Then we headed off like we were going to our own hangings.
In the end it went fine. We both passed. I was thrilled when I drew my card bc even though I had 6 different assessments to perform, 2 of them were cardiac. The two assessments that I was most confident of. I also head head/face, neck, ears, and neck veins. It really wouldn't have mattered what those last four were because I knew I was ok when I saw cardiac.
After we were done we had a short break, then a library session, and lunch. Then this afternoon we learned about doing breast exams, microscopic slides, and pelvic exams. It was pretty fun.
The hardest part for me is how close some of this hits to home right now. People here care and are amazing, but at times I feel like everyone is thinking "ya ya we know you have cervical cancer." Inevitably I talk about it more than I ever plan on, but it's just always right there and so relevant to all we are doing. There are so many things I want to say and so many things I want to tell my instructors and classmates about "doing this" or "don't do this" because of my unique perspective as the patient we are studying to take care of, but usually there just isn't enough time.
Instead I say a few things and hold the rest in. It's all part of the learning process though. I need to learn to "zip it" now because soon enough I wont be at vagina camp, and instead of classmates, I'm actually going to have real patients. That is what is really scary!
In order to attend what is really known as Clinical Bound or CB, we have to be done with didactic portion of our program. Then we attend this week long intensive training of our clinical skills before we start training with preceptors.
While we are here we actually do all the coursework for two full classes. Well, actually we have to do prep work before we come too.
So we are expected to come with the knowledge of how to do a more thorough than you have probably ever had done physical exam. It is broken into parts that we need to know inside and out. The first full day we are here (yesterday) we spend the entire day practicing and getting tips and trying to master our skills. Then on day 2 (today) we test out on our physical exam skills in the morning. We each have partners and we had to sign up for a time slot yesterday. We also are assigned a faculty member.
My partner and I were terrified of our faculty member. To make matters worse stressed by the knowledge that if you fail, you have one chance to retest and if you fail again, you are sent home. No pressure or anything since it would mean new plane tickets and a ride out of here. Have I mentioned that I am literally on the side of a mountain in town so small it doesn't even have a McDonald's? Doesn't McDonalds have a restaurant every 6 blocks in the US?...not here. I think there is a dollar store, a Dairy Queen, a subway and a gas station. There might be a few more things but that is really about it.
Oh ya, assessments...So my test out was for 9:15 this morning. I was allowed 15 minutes to perform whatever random physical assessment combination I drew. If you have time at the end of your assessment you are allowed one minute to look at your note cards to see if you missed anything and that's about it.
So my roommate/partner and I practiced all yesterday until we literally couldn't function anymore. Then we took some time to decompress in the later evening and I got violently ill. I had been nauseated for a few hours and had taken 8 mg Zofran and then I tried some Compazine, but it never had enough time to take effect. A few hours later I felt much better and crawled into bed.
We were back up and practicing in the safety of our room at 6am today. We did go to breakfast and I took a quick shower but other than that we practiced right up until 9am. Then we headed off like we were going to our own hangings.
In the end it went fine. We both passed. I was thrilled when I drew my card bc even though I had 6 different assessments to perform, 2 of them were cardiac. The two assessments that I was most confident of. I also head head/face, neck, ears, and neck veins. It really wouldn't have mattered what those last four were because I knew I was ok when I saw cardiac.
After we were done we had a short break, then a library session, and lunch. Then this afternoon we learned about doing breast exams, microscopic slides, and pelvic exams. It was pretty fun.
The hardest part for me is how close some of this hits to home right now. People here care and are amazing, but at times I feel like everyone is thinking "ya ya we know you have cervical cancer." Inevitably I talk about it more than I ever plan on, but it's just always right there and so relevant to all we are doing. There are so many things I want to say and so many things I want to tell my instructors and classmates about "doing this" or "don't do this" because of my unique perspective as the patient we are studying to take care of, but usually there just isn't enough time.
Instead I say a few things and hold the rest in. It's all part of the learning process though. I need to learn to "zip it" now because soon enough I wont be at vagina camp, and instead of classmates, I'm actually going to have real patients. That is what is really scary!
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