It seems that I'm on an upward trend this week. Bella still isn't sleeping well; last night was still about every hour waking but much easier to comfort so no one stayed up too much. Even with that, today I felt pretty good. Or rather, I felt "normal". I'm tired, it was hard to get moving this morning, and I can really feel the lack of sleep, but it feels very much like I did before my diagnosis. Baby life can just kick your butt sometimes!
So today my dad took Bella and I out to lunch (thank you dad!) and then a quick errand. Then we dropped him off at home and headed home. I needed to make a quick stop at the grocery store on the way home and as I was unloading Bella from the car, I felt almost giddy. Part of it was the amazing weather we had today (sunshine was SO missed) and part of it was the realization that I felt normal. My hair hasn't fallen out, my energy was good, I was out on my own with my baby running an errand, and it felt so good! We even went for a family walk this evening when Nick got home. Although I am horrendously out of shape, it felt good to get out and move.
Tomorrow I'm hoping to have some more "normal" time and even hit up the farmers market and mommy group (what had been my routine on Thursdays). Let's hope Bella sleeps some tonight so getting up in the morning isn't too challenging! This weekend I'm aiming towards date night on Saturday and my friend Olivia's baby shower on Sunday! Must keep hydrated and well nourished though in preparation for Monday. Sister KC is coming up to spend Monday with us, so I can look forward to some quality time with her on Sunday evening too! Life after chemo- so far so good. I'll take one rough week and one good week. If the good week is this good- I think I'm doing outstanding. =)
Wednesday, March 30, 2011
Tuesday, March 29, 2011
Life as a Cancer Mommy
Every day I have to make choices about my priorities. Of course this is a true statement for every single person on the planet, but I have really felt the impact of this since my diagnosis. Every day I have to decide how much energy I have, and where to allot it. With an 8 month old baby this challenge can be incredibly daunting.
Last night Isabella barely slept. I don't know if she is teething, having tummy troubles, going through a growth spurt, advancing developmentally, or all of the above. All I know is that Nick, my mom and I took turns all evening quieting Isabella, and then after bringing her to bed she woke up every hour or less. (As I type this I remember she did this for three days straight before tooth number one appearing- please universe, let that be the cause!) Tonight- it is looking very much the same. My sweet girl had a relatively nasty disposition all day today as a result of her lack of sleep too. She was screaming at me this morning when I was trying to coax her into a morning nap- so much so that my mom was woken up down the hall and came to see what the heck was going on. Gratefully the subsequent naps weren't quite as traumatizing, but not easy all the same. Tonight I am feeling a little beaten up from such a long day with a cranky baby.
This is where the whole cancer thing comes in. My energy is limited and I know this. Nothing is as important as caring for my baby, but I admit- my coping skills are lacking at the moment. Or overloaded perhaps. Although I seem to be up for the challenge of a "normal" day in the life with my little love, a day after zero sleep for both of us feels almost insurmountable. My mom even let me sleep this morning when she found Isabella hysterically screaming in protest to her morning nap, and yet when I was on my own this afternoon and evening I felt like I was losing it.
And so I have to make decisions about whether it was just a hard day because it was a hard day, and I would have felt the way that I did whether or not I was dealing with cancer. Or if in fact the day was harder than it should have been because of my somewhat overloaded capacity. Truth be told, in my pre-cancer life, I would have asked for help today. I would have made sure to have back up because I would have been zonked by the lack of sleep on its own. But then I start to worry about conserving my energy, and not wearing myself out because it could make treatment harder, etc etc etc.
I feel like I am starting to ramble so I will stop here, but I guess today was just a reminder that I am still a mommy- and some days are just really tough. As my mommy friends Vanessa and Kelly like to say- today I was a bonefide resident of Crazytown. I don't know why being in the throws of cancer treatment would change this!
A couple of missed shout outs from the last couple of days before I head to bed! First off- thank you Russell & Colleen for visiting on Friday and bringing some good food from Whole Foods! It was good to see you guys! Monica- thank you for the awesome hats so thoughtfully made (they are super soft!), and the hydrating spray too. It was so nice to see you and catch up! Thank you to my sister Sarah for helping me set up the "Lotsa Hands" website and "herding the cats" of the amazing support I'm being offered. Not to mention to all the Wilhelms for a fun dinner & cleaning up after! A shout out to Roland and Kelly- thank you for the fantastic soft hats! The colors are great and I'm sure they will be perfect once I need them. Finally, thank you to everyone that has already signed up to help over the coming months with everything from post chemo care to doggie play time, and also to those that have donated to my sister's Avon walk. I am amazed and blessed every single day by the incredible community surrounding me. My dear family friend Michael reminded me that Buddhists see illness as a great fortune (I'm sure I'm paraphrasing poorly here) because you are reminded of the beauty of the world, and can truly experience compassion in the experience. I see my good fortune every day because of this illness, and although I wouldn't wish it on anyone, I try to sit in gratefulness for that at least.
I'll close you out with a couple of pictures taken over the last week of miss Isabella and even one of me. =) See, I'm not knocking at deaths door, I promise!
Last night Isabella barely slept. I don't know if she is teething, having tummy troubles, going through a growth spurt, advancing developmentally, or all of the above. All I know is that Nick, my mom and I took turns all evening quieting Isabella, and then after bringing her to bed she woke up every hour or less. (As I type this I remember she did this for three days straight before tooth number one appearing- please universe, let that be the cause!) Tonight- it is looking very much the same. My sweet girl had a relatively nasty disposition all day today as a result of her lack of sleep too. She was screaming at me this morning when I was trying to coax her into a morning nap- so much so that my mom was woken up down the hall and came to see what the heck was going on. Gratefully the subsequent naps weren't quite as traumatizing, but not easy all the same. Tonight I am feeling a little beaten up from such a long day with a cranky baby.
This is where the whole cancer thing comes in. My energy is limited and I know this. Nothing is as important as caring for my baby, but I admit- my coping skills are lacking at the moment. Or overloaded perhaps. Although I seem to be up for the challenge of a "normal" day in the life with my little love, a day after zero sleep for both of us feels almost insurmountable. My mom even let me sleep this morning when she found Isabella hysterically screaming in protest to her morning nap, and yet when I was on my own this afternoon and evening I felt like I was losing it.
And so I have to make decisions about whether it was just a hard day because it was a hard day, and I would have felt the way that I did whether or not I was dealing with cancer. Or if in fact the day was harder than it should have been because of my somewhat overloaded capacity. Truth be told, in my pre-cancer life, I would have asked for help today. I would have made sure to have back up because I would have been zonked by the lack of sleep on its own. But then I start to worry about conserving my energy, and not wearing myself out because it could make treatment harder, etc etc etc.
I feel like I am starting to ramble so I will stop here, but I guess today was just a reminder that I am still a mommy- and some days are just really tough. As my mommy friends Vanessa and Kelly like to say- today I was a bonefide resident of Crazytown. I don't know why being in the throws of cancer treatment would change this!
A couple of missed shout outs from the last couple of days before I head to bed! First off- thank you Russell & Colleen for visiting on Friday and bringing some good food from Whole Foods! It was good to see you guys! Monica- thank you for the awesome hats so thoughtfully made (they are super soft!), and the hydrating spray too. It was so nice to see you and catch up! Thank you to my sister Sarah for helping me set up the "Lotsa Hands" website and "herding the cats" of the amazing support I'm being offered. Not to mention to all the Wilhelms for a fun dinner & cleaning up after! A shout out to Roland and Kelly- thank you for the fantastic soft hats! The colors are great and I'm sure they will be perfect once I need them. Finally, thank you to everyone that has already signed up to help over the coming months with everything from post chemo care to doggie play time, and also to those that have donated to my sister's Avon walk. I am amazed and blessed every single day by the incredible community surrounding me. My dear family friend Michael reminded me that Buddhists see illness as a great fortune (I'm sure I'm paraphrasing poorly here) because you are reminded of the beauty of the world, and can truly experience compassion in the experience. I see my good fortune every day because of this illness, and although I wouldn't wish it on anyone, I try to sit in gratefulness for that at least.
I'll close you out with a couple of pictures taken over the last week of miss Isabella and even one of me. =) See, I'm not knocking at deaths door, I promise!
Monday, March 28, 2011
Feeling happy
Today is a good day. I'm feeling almost "normal" and am very grateful for that. I'm sure that there are harder days to come, but feel like I can really take this process in stride for the most part. I'm sure starting my day off laughing and playing with Isabella has done wonders for my disposition, not to mention the sun shining today. Isabella, my mom and I went to lunch (I actually enjoyed my food!), and then did some errands. We have a baby shower to attend this weekend and I needed to get loads of treats for the bundle of joy (yay Olivia!). We also couldn't resist a stop into borders to check out the closing sale. We got some great new books for Isabella! We will have to go back when the sale is better, but I really love buying books- it's a sickness I'm sure!
Now it is naptime for little miss and I'm lying here beside her- resting but not sleeping. I did sleep in late today (thank you nick & mom!) but sleep seems to be evading me a little. Right now though, I'll blame happiness which is okay by me. Instead I'll find comfort and joy in the warmth of my baby and her sweet breathing sounds. And try to go to bed early! :)
Speaking of the little princess she gets more mobile every day. Today my mom found Bella had pulled herself up on the side if her crib! Guess it's time to lower the mattress... I feel like she is days away from crawling too. I'm terrified how life will change with a mobile baby but I know she will be happier once she can move.
So there you go- life really does go on after chemo. :)
Now it is naptime for little miss and I'm lying here beside her- resting but not sleeping. I did sleep in late today (thank you nick & mom!) but sleep seems to be evading me a little. Right now though, I'll blame happiness which is okay by me. Instead I'll find comfort and joy in the warmth of my baby and her sweet breathing sounds. And try to go to bed early! :)
Speaking of the little princess she gets more mobile every day. Today my mom found Bella had pulled herself up on the side if her crib! Guess it's time to lower the mattress... I feel like she is days away from crawling too. I'm terrified how life will change with a mobile baby but I know she will be happier once she can move.
So there you go- life really does go on after chemo. :)
Sunday, March 27, 2011
One week
Today I completed one full week past treatment. It's had some ups and downs though overall I feel positive in how I've handled my first chemotherapy. I won't give you the low down (again) on each days ups and downs, but I thought it would be good to just check in.
I felt confident that I was going to just keep getting stronger and better each day after treatment. That isn't in fact how chemo works and I'm not sure why I convinced myself of that. Although my energy does seem to be steadily improving, I am still easily fatigued and battling ups and downs with my blood sugar (which immediately can send me to a nap!).
I'm not feeling particularly coherent tonight so I guess I will keep this short. Thank you all for your comments. I read all of them and greatly appreciate them. This week I gratefully have only one medical item to take care of and that is a simple blood test to see how my blood is holding up to treatment. Specifically tomorrow I will have a complete blood count down, primarily to determine my white blood cell count. Day 8 is when my white blood cell count should be at its lowest point, so this will help us determine if we can stay on course with our treatment schedule. I feel positive that it will look good.
My attitude is good. I feel more positive as I get into treatment for the most part. Although I definitely have moments of realizing that I am truly in this for the long haul and that can be a little daunting. The food aversions and heartburn are the real killers in this regard. But hey, I did it for 10 months of pregnancy, so I suppose I can do it for 4 months of chemo, right? =)
Goodnight my dear family and friends. Thank you for all that you are and all that you do. It is on the strength of your support that I will get through this.
I felt confident that I was going to just keep getting stronger and better each day after treatment. That isn't in fact how chemo works and I'm not sure why I convinced myself of that. Although my energy does seem to be steadily improving, I am still easily fatigued and battling ups and downs with my blood sugar (which immediately can send me to a nap!).
I'm not feeling particularly coherent tonight so I guess I will keep this short. Thank you all for your comments. I read all of them and greatly appreciate them. This week I gratefully have only one medical item to take care of and that is a simple blood test to see how my blood is holding up to treatment. Specifically tomorrow I will have a complete blood count down, primarily to determine my white blood cell count. Day 8 is when my white blood cell count should be at its lowest point, so this will help us determine if we can stay on course with our treatment schedule. I feel positive that it will look good.
My attitude is good. I feel more positive as I get into treatment for the most part. Although I definitely have moments of realizing that I am truly in this for the long haul and that can be a little daunting. The food aversions and heartburn are the real killers in this regard. But hey, I did it for 10 months of pregnancy, so I suppose I can do it for 4 months of chemo, right? =)
Goodnight my dear family and friends. Thank you for all that you are and all that you do. It is on the strength of your support that I will get through this.
Thursday, March 24, 2011
Cycle day 4
Cycle days- that is how my medical team refers to each day in between treatments. Today is cycle day 4. Day one- treatment and worst symptoms. Day two- some nausea but minimal, mostly just tired. Day three- more energy, food aversions but some appetite, and finding the line of laying low and living life.
Day four I thought it was time to do something different. I was bound and determined to get out of the house (despite the crazy weather). My dad came up in the morning and helped me (slowly) motivate (with my mom's help too of course!) to get out of the house. Bella and I took a nap, we got some food in us, got dressed and headed out. The big destination? We went to Target and Whole Foods. Turns out, that is a big undertaking when you haven't left the house in three days. By the time I got home I was wiped out!
Just after we got home- despite desperately needing a nap- it was time for the representative from the Ceres Project to come by for my intake appointment. If you are looking for a great local cause to support (volunteering or financially) check them out. They deliver healthy, nutritive, local, organic meals to cancer patients based around food as medicine principles that Rebecca Katz uses in her book that I mentioned before. Anyhow sometime in mid-April I will become a client and begin receiving meals each week. That was the purpose of today's meeting- get my nutritive (and taste) needs explored to help support me through this process. I just feel so well taken care of between my family and doctors and services like Ceres. That is a good feeling.
After that meeting was done it was time for my dad to go home (it was nearly 3) and both my mom and I needed to crash. We had the typical "no you go lay down" conversation before it occurred to me that my dear friend Lindsay was on her first day of spring break and might just be available for a short playdate with Bella so that we could both go lay down. Gratefully Lindsay was a hop skip and a jump away and was happy to sit and play with my sweet baby girl for a couple of hours while I napped. Thank you Lindsay for loving and enjoying my baby and being willing and able to help! You're the best!
Then Nick came home a little earlier and sweetly went to the store since I finally had a craving (or at least a food that sounded tasty and not just edible) and he and mom cooked dinner. Tomorrow we are definitely eating the premade foods in the house I promise! =) The idea of food that sounded yummy was just too hard to pass up after several days of aversions. We are capping our night out catching up on American Idol (yes I still watch the silly show) and early to bed!
I'm sure there are much more interesting things I could have written about tonight, but I am just so darn tired! Guess I'd better watch my iron intake in case this is related to borderline anemia from treatment! I'm so brain foggy! I trust though that every day is going to get better and this time next week a trip to target and whole foods will be a piece of cake! Maybe even by myself with Bella!
So thank you all again for your love and support and simple interest as I walk through this fire. I promise to do my best to keep up with regular updates on the simply "hows" I am doing, and the more complex "whats" I am doing, and hopefully as my brain allows a little bit of what this whole experience is doing in my heart and mind. As the Grateful Dead once said "It's a long strange trip" we're on...
Day four I thought it was time to do something different. I was bound and determined to get out of the house (despite the crazy weather). My dad came up in the morning and helped me (slowly) motivate (with my mom's help too of course!) to get out of the house. Bella and I took a nap, we got some food in us, got dressed and headed out. The big destination? We went to Target and Whole Foods. Turns out, that is a big undertaking when you haven't left the house in three days. By the time I got home I was wiped out!
Just after we got home- despite desperately needing a nap- it was time for the representative from the Ceres Project to come by for my intake appointment. If you are looking for a great local cause to support (volunteering or financially) check them out. They deliver healthy, nutritive, local, organic meals to cancer patients based around food as medicine principles that Rebecca Katz uses in her book that I mentioned before. Anyhow sometime in mid-April I will become a client and begin receiving meals each week. That was the purpose of today's meeting- get my nutritive (and taste) needs explored to help support me through this process. I just feel so well taken care of between my family and doctors and services like Ceres. That is a good feeling.
After that meeting was done it was time for my dad to go home (it was nearly 3) and both my mom and I needed to crash. We had the typical "no you go lay down" conversation before it occurred to me that my dear friend Lindsay was on her first day of spring break and might just be available for a short playdate with Bella so that we could both go lay down. Gratefully Lindsay was a hop skip and a jump away and was happy to sit and play with my sweet baby girl for a couple of hours while I napped. Thank you Lindsay for loving and enjoying my baby and being willing and able to help! You're the best!
Then Nick came home a little earlier and sweetly went to the store since I finally had a craving (or at least a food that sounded tasty and not just edible) and he and mom cooked dinner. Tomorrow we are definitely eating the premade foods in the house I promise! =) The idea of food that sounded yummy was just too hard to pass up after several days of aversions. We are capping our night out catching up on American Idol (yes I still watch the silly show) and early to bed!
I'm sure there are much more interesting things I could have written about tonight, but I am just so darn tired! Guess I'd better watch my iron intake in case this is related to borderline anemia from treatment! I'm so brain foggy! I trust though that every day is going to get better and this time next week a trip to target and whole foods will be a piece of cake! Maybe even by myself with Bella!
So thank you all again for your love and support and simple interest as I walk through this fire. I promise to do my best to keep up with regular updates on the simply "hows" I am doing, and the more complex "whats" I am doing, and hopefully as my brain allows a little bit of what this whole experience is doing in my heart and mind. As the Grateful Dead once said "It's a long strange trip" we're on...
Insomnia...
This is the second night in a row that I've been lying in bed awake starting at about 5am. Last night I blamed it on anxiety from having Bella away from me for the second night in a row. I took an Ativan, calmed my stomach with a sip of kefir, and eventually fell back asleep. Tonight (today?) I'm writing this snuggled close to my baby. I've taken the Ativan and my stomach feels okay, yet sleep eludes me.
I can't help but wonder should I have pushed myself to do more yesterday? Perhaps too much rest and not enough activity is causing this. But considering I didn't even close my eyes until midnight, I'm guessing not. I keep trying to catch the track I'm sure is playing in my mind that is keeping me awake, but even that has a distant sound on this early rainy morning. I suppose I should call the nurses line today to discuss insomnia. I worry about taking anything that will knock me out though because I do still have an infant in my care most nights. Well maybe the nurses and doctors can put their heads together and figure out a solution for me.
Assuming I can get a few more minutes of shut eye I'm really hoping to get out of the house today. I was aiming for a trip to the farmers market, but the weather doesn't sound permissive. So plan B- mommy group perhaps? We shall see. Just a moment of "normalcy" would be nice.
Double shout out to Nicks mom Lorraine for spending Tuesday afternoon, Tuesday night (including night shift for Bella) and all day Wednesday with us! She cooked, ran errands, made plans for future help, kept Bella happy and me fed and rested. And to my mom who continues to "mom" me despite fighting a nasty cold herself. She even sat up with me through an emotional moment last night and played trivial pursuit with me for a nice distracted cap to the evening.
I can't help but wonder should I have pushed myself to do more yesterday? Perhaps too much rest and not enough activity is causing this. But considering I didn't even close my eyes until midnight, I'm guessing not. I keep trying to catch the track I'm sure is playing in my mind that is keeping me awake, but even that has a distant sound on this early rainy morning. I suppose I should call the nurses line today to discuss insomnia. I worry about taking anything that will knock me out though because I do still have an infant in my care most nights. Well maybe the nurses and doctors can put their heads together and figure out a solution for me.
Assuming I can get a few more minutes of shut eye I'm really hoping to get out of the house today. I was aiming for a trip to the farmers market, but the weather doesn't sound permissive. So plan B- mommy group perhaps? We shall see. Just a moment of "normalcy" would be nice.
Double shout out to Nicks mom Lorraine for spending Tuesday afternoon, Tuesday night (including night shift for Bella) and all day Wednesday with us! She cooked, ran errands, made plans for future help, kept Bella happy and me fed and rested. And to my mom who continues to "mom" me despite fighting a nasty cold herself. She even sat up with me through an emotional moment last night and played trivial pursuit with me for a nice distracted cap to the evening.
Tuesday, March 22, 2011
The day after
Yesterday was semi brutal but not the worst thing I've ever experienced. It truly felt like a hangover. It started out with brain fog and fuzziness and slowly drifted into that sort of spinning "I've been hit by a bus" feeling. At about 3:10 the nausea kicked in. Gratefully it never went passed nausea and was pretty much managed by medications and keeping my stomach coated with kefir every couple of hours. I even got a piece of toast in me by the end of the day.
Today was a little bit better. I am calling it the hangover of my hangover. I know those of you who have ever had a bad hangover knows what I'm talking about. It was that sort of lethargic, tired, not quite nauseous but not quite interested in food either. I spent a good portion of the day in bed napping and relaxing. I'm feeling like I'm on the upswing for sure already. Here's hoping that this is the "normal" trend for my treatments. I think I can handle two rough days out of every two weeks.
Today's shout outs go to a few people. First off Nick and my mom for their tireless support of me. I can't imagine how wearing it is to live this every day from the outside. And yet they still show up with a smile on their face and a great deal of caretaking. They were my support team on Monday- through the worst of it. Then today my dad took morning shift along with my mom so that I could sleep when Bella was awake. He was here well into the afternoon and even took me down to my appointment to get my shot to help encourage my white blood cell count up. Then Nick's mom Lorraine came by and spent all afternoon with us. After being here for the afternoon she decided she was taking tomorrow off and spending the night with us so that we could all get a full night of sleep while she takes night shift for Bella. This will be the first time that someone other than Nick or myself have taken night shift so it should be interesting! I'm sure it will go great. Though I will miss my baby girl since this will be my second night in a row sleeping away from her. Hopefully though it will allow me to wake up in the morning happy and feeling good and ready to play with my sweet girl! I also received a package from my girlfriend Courtney with a lovely teal colored hat. Thanks Courtney! Bella wanted to try it on too so I took a (blurry) picture and have posted it below. Final shout out to a visit from our friends Matt & Lindsay who brought me a great cotton hat (so soft!) and some yummy bath gel. I never thought that having cancer would actually make me feel pampered! Thanks you guys! It was so sweet of you.
On another note I was talking with my mom about comments on here and decided I wanted to encourage those of you that are reading to feel free to leave comments. I realize at times this may read like a personal journal. I just don't know how to write any other way I guess, but I am very thoughtful in the reality that this is public and is written to all of you, my friends, family and other followers. So please feel free to make any comments you are inspired to make. =) I appreciate them and it encourages me to continue writing regularly when I know there are people out there reading! Even if all you have to say is "thinking of you" or something short like that.
Bella trying on my new hat from Courtney!
Today was a little bit better. I am calling it the hangover of my hangover. I know those of you who have ever had a bad hangover knows what I'm talking about. It was that sort of lethargic, tired, not quite nauseous but not quite interested in food either. I spent a good portion of the day in bed napping and relaxing. I'm feeling like I'm on the upswing for sure already. Here's hoping that this is the "normal" trend for my treatments. I think I can handle two rough days out of every two weeks.
Today's shout outs go to a few people. First off Nick and my mom for their tireless support of me. I can't imagine how wearing it is to live this every day from the outside. And yet they still show up with a smile on their face and a great deal of caretaking. They were my support team on Monday- through the worst of it. Then today my dad took morning shift along with my mom so that I could sleep when Bella was awake. He was here well into the afternoon and even took me down to my appointment to get my shot to help encourage my white blood cell count up. Then Nick's mom Lorraine came by and spent all afternoon with us. After being here for the afternoon she decided she was taking tomorrow off and spending the night with us so that we could all get a full night of sleep while she takes night shift for Bella. This will be the first time that someone other than Nick or myself have taken night shift so it should be interesting! I'm sure it will go great. Though I will miss my baby girl since this will be my second night in a row sleeping away from her. Hopefully though it will allow me to wake up in the morning happy and feeling good and ready to play with my sweet girl! I also received a package from my girlfriend Courtney with a lovely teal colored hat. Thanks Courtney! Bella wanted to try it on too so I took a (blurry) picture and have posted it below. Final shout out to a visit from our friends Matt & Lindsay who brought me a great cotton hat (so soft!) and some yummy bath gel. I never thought that having cancer would actually make me feel pampered! Thanks you guys! It was so sweet of you.
On another note I was talking with my mom about comments on here and decided I wanted to encourage those of you that are reading to feel free to leave comments. I realize at times this may read like a personal journal. I just don't know how to write any other way I guess, but I am very thoughtful in the reality that this is public and is written to all of you, my friends, family and other followers. So please feel free to make any comments you are inspired to make. =) I appreciate them and it encourages me to continue writing regularly when I know there are people out there reading! Even if all you have to say is "thinking of you" or something short like that.
Bella trying on my new hat from Courtney!
Monday, March 21, 2011
Spoke too soon
Mere moments after my last post the nausea hit. I've been playing the drug, food, sleep cycle ever since.
Although this is by no means fun and I've been laid up all day, it isn't even as bad as the stomach flu so far. So here's hoping my body is doing exactly what it needs to and that I'll be back on my feet tomorrow or the next day!
Although this is by no means fun and I've been laid up all day, it isn't even as bad as the stomach flu so far. So here's hoping my body is doing exactly what it needs to and that I'll be back on my feet tomorrow or the next day!
Who remembers the party???
Whoever described chemo as a hangover without the fun is brilliant. That is exactly how I feel. Luckily I'm not feeling nauseous, just sort of drugged.
I will write more later when I'm hopefully feeling up to sitting at my laptop but thought I'd offer a quick update from my phone. Overall- not fun but not so bad either.
I will write more later when I'm hopefully feeling up to sitting at my laptop but thought I'd offer a quick update from my phone. Overall- not fun but not so bad either.
Sunday, March 20, 2011
Big Love
Well maybe not that kind of Big Love (just watched the finale- amazing!), but today I am feeling love that is big. As I sit here waiting to see what tomorrow will bring I am reflecting on my truly truly amazing community. In many ways, I think you actually don't want to ever see how great your community really is. Usually when you see the depth of love and support from your community it means there is something bad that has happened. With that said I am one very lucky person to have the people in my life that I do.
Today we had a huge crew at our house cleaning it (and I mean cleaning) while we were on our way back from a little overnight to Monterey Bay. Nick's mom put together an amazing powerhouse effort to come in and prep our house for my chemo treatment. It included herself, Henry, her mom Marie, her sister Sue, sister Pam, Brother in Law Kel, Niece Alyssa, Nick's brother's Mikey and Gerlando, and my mom. They went so above and beyond in their efforts. Sue even brought flowers to fill our house with bright cheerful somethings, and Marie made Minestrone that we can freeze for later.
I admittedly was uncomfortable with the idea of having people come in and clean my house. It was entirely vanity (what will they think when they see what is under my couch!, and surely they'll think we are just disgusting because of ... fill in the blank). The truth of the matter is that it was a wonderful treat and greatly appreciated. And boy oh boy, is our house clean!
In addition to this powerhouse crew, I came home to a lovely surprise from my dear friend Laura. She is one very very thoughtful lady. Laura, everything surprised and delighted me and I can't wait to read the books- they are sure to amuse! =)
I also want to thank everyone for notes, voicemails, text messages, facebook messages, emails, cards, etc. I have been trying my hardest to keep up with the responses but it has officially gotten overwhelming. But I want to make sure to say somewhere (at least once) that I have gotten every message and am so grateful. It means so much to know that I am in everyone's thoughts and prayers. It gives me bolstered confidence to know that I am quite literally surrounded on all sides. I will still try and reply as I am able but needed to focus on other things this past week.
Speaking of other things, we took a wonderful get away up to Monterey Bay last night. It was a sweet little trip. We arrived in the early afternoon (Bella cooperated fairly well on longer drive) and after check in to the hotel walked down to the aquarium. I haven't actually ever been to the Monterey Bay Aquarium so it was particularly fun for me. The exhibits are wonderful and it was particularly fun to see Bella zone out on all the fish. I think it may have been a little overwhelming for her because she didn't get particularly happy or excited but just sort of stared at everything as we walked along. After our tour of the aquarium we strolled through Cannery Row and all of the tourists shops, went back to the hotel for a nap and then headed out to dinner. I managed to actually forget for a bit what I am currently facing. That felt really good. Then today we drove to Carmel by the Sea (or I should say through Carmel since Bella was napping there was no stopping), hit up Pezzini's Artichoke Farm in Castroville (had some of their product for dinner- yummy!), and a quick stop at the Gilroy Outlets before heading home. It was a truly wonderful little trip and I am so very happy that we made it happen. I needed this.
Now with a clean house and a clean mind I am ready to face tomorrow head on. Let's kick this cancer's butt! =)
Today we had a huge crew at our house cleaning it (and I mean cleaning) while we were on our way back from a little overnight to Monterey Bay. Nick's mom put together an amazing powerhouse effort to come in and prep our house for my chemo treatment. It included herself, Henry, her mom Marie, her sister Sue, sister Pam, Brother in Law Kel, Niece Alyssa, Nick's brother's Mikey and Gerlando, and my mom. They went so above and beyond in their efforts. Sue even brought flowers to fill our house with bright cheerful somethings, and Marie made Minestrone that we can freeze for later.
I admittedly was uncomfortable with the idea of having people come in and clean my house. It was entirely vanity (what will they think when they see what is under my couch!, and surely they'll think we are just disgusting because of ... fill in the blank). The truth of the matter is that it was a wonderful treat and greatly appreciated. And boy oh boy, is our house clean!
In addition to this powerhouse crew, I came home to a lovely surprise from my dear friend Laura. She is one very very thoughtful lady. Laura, everything surprised and delighted me and I can't wait to read the books- they are sure to amuse! =)
I also want to thank everyone for notes, voicemails, text messages, facebook messages, emails, cards, etc. I have been trying my hardest to keep up with the responses but it has officially gotten overwhelming. But I want to make sure to say somewhere (at least once) that I have gotten every message and am so grateful. It means so much to know that I am in everyone's thoughts and prayers. It gives me bolstered confidence to know that I am quite literally surrounded on all sides. I will still try and reply as I am able but needed to focus on other things this past week.
Speaking of other things, we took a wonderful get away up to Monterey Bay last night. It was a sweet little trip. We arrived in the early afternoon (Bella cooperated fairly well on longer drive) and after check in to the hotel walked down to the aquarium. I haven't actually ever been to the Monterey Bay Aquarium so it was particularly fun for me. The exhibits are wonderful and it was particularly fun to see Bella zone out on all the fish. I think it may have been a little overwhelming for her because she didn't get particularly happy or excited but just sort of stared at everything as we walked along. After our tour of the aquarium we strolled through Cannery Row and all of the tourists shops, went back to the hotel for a nap and then headed out to dinner. I managed to actually forget for a bit what I am currently facing. That felt really good. Then today we drove to Carmel by the Sea (or I should say through Carmel since Bella was napping there was no stopping), hit up Pezzini's Artichoke Farm in Castroville (had some of their product for dinner- yummy!), and a quick stop at the Gilroy Outlets before heading home. It was a truly wonderful little trip and I am so very happy that we made it happen. I needed this.
Now with a clean house and a clean mind I am ready to face tomorrow head on. Let's kick this cancer's butt! =)
Thursday, March 17, 2011
Chemo Class
I expected to be writing a post about how freaked out I am because I had my chemotherapy "lesson" today. I was sure that I was going to hear all the facts and figures about what to expect and leave spinning. That, however, is not the case! Yay me! =)
I had some idea in my head that chemotherapy in and of itself was going to be somehow painful. As in while I sit there with poison coursing through my veins I would feel it. Turns out, I shouldn't! So that's good news. The rest of the lesson was about what I expected. Most likely my hair will fall out. My symptoms (the worst of them) should be fatigue and possibly nausea for a couple of days post treatment. I also may experience some bone and joint pain, and possibly neuropathy (pain, tingling and numbness in my extremities), but that is more likely during the second half of treatment when I'm on a different drug.
Anyhow I know it isn't going to be a walk in the park by any means, but I at least feel like I can handle whats to come. Most of the symptoms that I'm expecting are really similar to the yucky parts of pregnancy, and I know what that is like. The only difference is that I don't have a happy event to look forward to at the end- only the absence of a negative event. I'll take it. =)
So my schedule is as follows- labs on Sunday to check my blood counts, chemo on Monday for 2 hours, and a visit with my doctor on the same day. This will happen every other week for 8 weeks (4 total treatments). Then I switch to a different drug, following the same routine for another 8 weeks. This is all assuming that my blood counts stay high enough (which I have faith that they will because we will make a concerted effort using the Cancer Fighting Kitchen to use food items to help with that). If for some reason my blood counts came back too low, they could delay treatment for a couple of days or a week until the counts get back up. The main issue is that if the White Blood Cells are low, I am at high risk for infection (dangerously high). If the Red Blood Cells are low I might need a transfusion. If my Platelets are low, it puts me at risk of bleeding (since this is the clotting agent).
There is your update from Chemo class! =) I ask again to please send me good ju ju on Monday at 8:30 am. See the Chemo attacking the cancer cells, and not my body. See my body directing the chemicals to the invasive cells and protecting the rest of my cells. See the tumor shrinking away to nothing.
I did think of one other thing that people who want to help could do for me. If you knit or sew or crochet, I will need soft (not itchy- probably just cotton) hats for when my hair falls out. If you don't do those things yourself, but you happen to see something out, let me know so I can seek it out. Most of the hats I have are slightly itchy knit caps for cold weather. I figure I will be wearing a lot of hats around the house once my hair falls out. I'll get a wig too I'm sure for more public situations, but those can get pretty itchy and hot, so I know I'll want options (and am just not a scarf girl). =)
Thank you all so much for the love and support you have offered me. It means more than I can express. I am definitely a very lucky person to have such an amazing community surrounding me. =) Silver lining right?
I had some idea in my head that chemotherapy in and of itself was going to be somehow painful. As in while I sit there with poison coursing through my veins I would feel it. Turns out, I shouldn't! So that's good news. The rest of the lesson was about what I expected. Most likely my hair will fall out. My symptoms (the worst of them) should be fatigue and possibly nausea for a couple of days post treatment. I also may experience some bone and joint pain, and possibly neuropathy (pain, tingling and numbness in my extremities), but that is more likely during the second half of treatment when I'm on a different drug.
Anyhow I know it isn't going to be a walk in the park by any means, but I at least feel like I can handle whats to come. Most of the symptoms that I'm expecting are really similar to the yucky parts of pregnancy, and I know what that is like. The only difference is that I don't have a happy event to look forward to at the end- only the absence of a negative event. I'll take it. =)
So my schedule is as follows- labs on Sunday to check my blood counts, chemo on Monday for 2 hours, and a visit with my doctor on the same day. This will happen every other week for 8 weeks (4 total treatments). Then I switch to a different drug, following the same routine for another 8 weeks. This is all assuming that my blood counts stay high enough (which I have faith that they will because we will make a concerted effort using the Cancer Fighting Kitchen to use food items to help with that). If for some reason my blood counts came back too low, they could delay treatment for a couple of days or a week until the counts get back up. The main issue is that if the White Blood Cells are low, I am at high risk for infection (dangerously high). If the Red Blood Cells are low I might need a transfusion. If my Platelets are low, it puts me at risk of bleeding (since this is the clotting agent).
There is your update from Chemo class! =) I ask again to please send me good ju ju on Monday at 8:30 am. See the Chemo attacking the cancer cells, and not my body. See my body directing the chemicals to the invasive cells and protecting the rest of my cells. See the tumor shrinking away to nothing.
I did think of one other thing that people who want to help could do for me. If you knit or sew or crochet, I will need soft (not itchy- probably just cotton) hats for when my hair falls out. If you don't do those things yourself, but you happen to see something out, let me know so I can seek it out. Most of the hats I have are slightly itchy knit caps for cold weather. I figure I will be wearing a lot of hats around the house once my hair falls out. I'll get a wig too I'm sure for more public situations, but those can get pretty itchy and hot, so I know I'll want options (and am just not a scarf girl). =)
Thank you all so much for the love and support you have offered me. It means more than I can express. I am definitely a very lucky person to have such an amazing community surrounding me. =) Silver lining right?
Wednesday, March 16, 2011
Lucky Girl
Last night I was brought special treats just for me! First, Nick's aunt Yvette stopped by with an incredible cookbook called "The Cancer Fighting Kitchen" by Rebecca Katz.
Even for those who are not fighting cancer, this book is outstanding. The recipes are delicious (at least the ones we've tried so far) and she really explores food as medicine for all bodies. Yvette knows Rebecca personally and had her sign the book for me too. So sweet. On top of all that, she brought me the ingredients for one of the crucial recipes- magic mineral broth so that I could start drinking it right away.
Then, before Yvette had even gone, Nick's mom stopped by with another surprise for me! She brought me an amazingly soft blanket from the company that makes my favorite one of Bella's blankets- Little Giraffe. The blanket is a luxe duo blanket and is SO soft. It is soft pink and cream.
And I have a full sized blanket on its way from their Chenille collection. These will be amazing for chemotherapy and recovery. I can take the little one with me for sure and possibly even the big one if I decide I need it. The big one will be my blanket for recuperating at home.
So last night I got to feel special and treated and let the love wash over me. It felt pretty good.
Today was a little rough. I am feeling sore and tired after my procedure yesterday and still battling some depression. It becomes difficult to separate the physical exhaustion caused by depression and then the real physical symptoms of the various things I am experiencing. But considering I am only 3 weeks beyond diagnosis I am going to give myself a break.
So the results from the egg retrieval are in. They retrieved 7 eggs, 4 of which were mature enough to fertilize. Out of the 4 mature eggs, 3 of them actual fertilized. I believe there is a possibility still that the quality of the embryos could deteriorate prior to being frozen, so we should hear by Friday if they all made it. I know we don't necessarily need 3, or possibly any of them, but I really hope that they all make it just in case. So please send those future babies good ju ju to grow and mature and be good for freezing! =)
Even for those who are not fighting cancer, this book is outstanding. The recipes are delicious (at least the ones we've tried so far) and she really explores food as medicine for all bodies. Yvette knows Rebecca personally and had her sign the book for me too. So sweet. On top of all that, she brought me the ingredients for one of the crucial recipes- magic mineral broth so that I could start drinking it right away.
Then, before Yvette had even gone, Nick's mom stopped by with another surprise for me! She brought me an amazingly soft blanket from the company that makes my favorite one of Bella's blankets- Little Giraffe. The blanket is a luxe duo blanket and is SO soft. It is soft pink and cream.
So last night I got to feel special and treated and let the love wash over me. It felt pretty good.
Today was a little rough. I am feeling sore and tired after my procedure yesterday and still battling some depression. It becomes difficult to separate the physical exhaustion caused by depression and then the real physical symptoms of the various things I am experiencing. But considering I am only 3 weeks beyond diagnosis I am going to give myself a break.
So the results from the egg retrieval are in. They retrieved 7 eggs, 4 of which were mature enough to fertilize. Out of the 4 mature eggs, 3 of them actual fertilized. I believe there is a possibility still that the quality of the embryos could deteriorate prior to being frozen, so we should hear by Friday if they all made it. I know we don't necessarily need 3, or possibly any of them, but I really hope that they all make it just in case. So please send those future babies good ju ju to grow and mature and be good for freezing! =)
Tuesday, March 15, 2011
The harvest
I'm sitting at UCSF while Nick retrieves our car to take me home. They harvested my eggs, only got 7. It's a little disappointing but I have faith that it will be perfect. We will know how many fertilize tomorrow.
This building used to be their cancer center. They have a beautiful mural on the wall of tiles that have local plants and messages from cancer patients. One caught my eye and I thought I'd share-
"It should have been a movie, set on a Hawaiian island. Instead it is a television drama, weekly episodes in our living room."
I know the feeling.
This building used to be their cancer center. They have a beautiful mural on the wall of tiles that have local plants and messages from cancer patients. One caught my eye and I thought I'd share-
"It should have been a movie, set on a Hawaiian island. Instead it is a television drama, weekly episodes in our living room."
I know the feeling.
Monday, March 14, 2011
Houston...
We have teeth! Well, a tooth. Bella cut her first tooth sometime between last night and this morning. Poor thing has been sleeping terribly for the last three nights (we're talking up nearly every hour) so I am grateful that the tooth is through. I expect a second to follow soon as I understand they typically arrive in pairs.
Every milestone is a little bittersweet for me. I am so excited (I was seriously giddy this morning when I discovered her tooth) but then get a little sad thinking about how quickly her life is going. I know I will have more babies and will experience this again, but there is something special about the first. At any rate, it is such a wonderful joy to celebrate life's little milestones with my baby girl!
No pictures showing the tooth, but here's one of my big girl relaxing with a bottle in Panera!
Every milestone is a little bittersweet for me. I am so excited (I was seriously giddy this morning when I discovered her tooth) but then get a little sad thinking about how quickly her life is going. I know I will have more babies and will experience this again, but there is something special about the first. At any rate, it is such a wonderful joy to celebrate life's little milestones with my baby girl!
No pictures showing the tooth, but here's one of my big girl relaxing with a bottle in Panera!
Sunday, March 13, 2011
Maximum Capacity
I think we may have hit maximum capacity. I said tonight "I don't want to be sick. I don't want to be broken". It isn't so much that I am scared of the battle to come (although I am), but more that I just want to live my life and not have it disrupted. I want to take care of my baby girl and start an exercise regime and continue to create new recipes to cook at home. I want to go out with my friends and celebrate the many 30th birthdays this year, and have family dinners at home. I want all of these things and to not have them compromised by feeling sick by the poison I'm about to put in my body or by my insecurity about being the fat bald girl.
Over the last couple of weeks I've been so focused on the diagnostics and the doctors appointments and the fertility that I've somewhat been able to ignore this aspect of this process. I could hold it in my heart that although I might have some bad days and need a little help for a couple of days every other week, ultimately my life would be minimally disrupted. The last couple of days this imaginary future has been shattered a bit.
Everyone wants to help. I am exceptionally grateful for the love and support I am receiving. Let me be clear about this first and foremost. With that said, I don't want help. No, it isn't that- I don't want to need help. I want to be strong and independent and do all of the things I said before. The idea of having to accept people cooking me meals, cleaning my house, caring for my baby, breaks my heart. I guess I'm not very good at leaning on others and I'm guessing this must be a part of my lesson in this. I thought I did pretty well with it when I had Isabella and was recovering from birth, but apparently that wasn't good enough.
Aside from allowing myself to be vulnerable in this most undesired way, I am working with the reality of what chemo is going to be like. I expect to lose my hair. I expect to be sick and tired. I expect to feel "wrong" as the chemicals course through my veins. I can say all of these things very matter-of-factly but at the end of the day I am terrified of the unknown. I believe myself to be strong enough to handle whatever is thrown at me but I also know that I have limits- at least emotionally speaking.
So I sludge through this experience, wondering how I will be, who I will be, and what will become of me at the end of it all.
Facts and figures updates- they are harvesting my eggs on Tuesday so fertility will be done. Still no word on my PET scan results, but I expect I will hear from one of my doctors tomorrow about it. This will hopefully determine if they want to ultrasound and biopsy the lymphnodes that appeared slightly enlarged on the MRI. Chemo starts the 21st, so I have exactly one week from tomorrow to prepare for that. I go to my "class" about it on Thursday as well as a counseling session with the cancer counselor and Nick.
The plan for this week other than the harvest? I'm focusing on preparing for chemo, having some "normal" fun, and helping Nick unwind a little to prepare too. I think we are all feeling the weight of this right now...
Over the last couple of weeks I've been so focused on the diagnostics and the doctors appointments and the fertility that I've somewhat been able to ignore this aspect of this process. I could hold it in my heart that although I might have some bad days and need a little help for a couple of days every other week, ultimately my life would be minimally disrupted. The last couple of days this imaginary future has been shattered a bit.
Everyone wants to help. I am exceptionally grateful for the love and support I am receiving. Let me be clear about this first and foremost. With that said, I don't want help. No, it isn't that- I don't want to need help. I want to be strong and independent and do all of the things I said before. The idea of having to accept people cooking me meals, cleaning my house, caring for my baby, breaks my heart. I guess I'm not very good at leaning on others and I'm guessing this must be a part of my lesson in this. I thought I did pretty well with it when I had Isabella and was recovering from birth, but apparently that wasn't good enough.
Aside from allowing myself to be vulnerable in this most undesired way, I am working with the reality of what chemo is going to be like. I expect to lose my hair. I expect to be sick and tired. I expect to feel "wrong" as the chemicals course through my veins. I can say all of these things very matter-of-factly but at the end of the day I am terrified of the unknown. I believe myself to be strong enough to handle whatever is thrown at me but I also know that I have limits- at least emotionally speaking.
So I sludge through this experience, wondering how I will be, who I will be, and what will become of me at the end of it all.
Facts and figures updates- they are harvesting my eggs on Tuesday so fertility will be done. Still no word on my PET scan results, but I expect I will hear from one of my doctors tomorrow about it. This will hopefully determine if they want to ultrasound and biopsy the lymphnodes that appeared slightly enlarged on the MRI. Chemo starts the 21st, so I have exactly one week from tomorrow to prepare for that. I go to my "class" about it on Thursday as well as a counseling session with the cancer counselor and Nick.
The plan for this week other than the harvest? I'm focusing on preparing for chemo, having some "normal" fun, and helping Nick unwind a little to prepare too. I think we are all feeling the weight of this right now...
Thursday, March 10, 2011
Appointments just keep coming
I keep thinking that I'm approaching a (small) break in my insane appointment schedule, and then I get set up with a whole new set of appointments. Today I had fertility, and then at the last minute was scheduled to meet with the cancer counselor. I am also scheduled for fertility again on Saturday, counseling again on Thursday, and chemotherapy "teach" session on Thursday.
So what did I learn today? Well it looks like I may have fewer eggs for harvest than originally believed. I'm trying not to think about this as anything since we are creating these embryos for a reason. It isn't a bad thing if we "have" to use them. They counted 9 eggs today, which is significantly fewer than the 16 on Tuesday, and the 18 last week. I guess at certain points of your cycle your eggs and blood vessels look very much the same, so it can be a little hard to tell. We really won't know until the harvest anyhow. Really- we only need one, and it would be nice to have maybe 5 viable embryos "just in case". So even with 9 clear eggs, that shouldn't be a problem. Most importantly we think that the harvest will occur on Tuesday of next week. So we are getting close!
We have also officially scheduled the start of chemotherapy. I will begin treatment on Monday, March 21st. So those of you who do energy work, pray, meditate, whatever, at 8:30 am on Monday the 21st, send it my way! See the Chemo seeking out those cancer cells (and only those cancer cells) and destroying them. Productive poison. =)
I'm still struggling with the emotions of this whole process. It really isn't something anyone could prepare you for, and I'm sure everyone is a little different in how they feel and respond to the situation. With that said it is definitely a roller coaster. One day it is fear of dying and leaving my family. The next day it is about my hair and appearance and all things vain to go along with that. The next is just the entire lack of clarity about what it means to be "a survivor". Today I described living with the diagnosis like having a bubble around your entire body. You are still physically capable of doing everything that you usually do, nothing has really changed, but you feel as though you are slightly detached from the rest of the world and if you hit something just hard enough, or catch just the right edge- you could pop. Probably a strange description, but it is the best I've got so far. =) I'm sure it will change along the way.
And on a happy note- here is a photo of my sweet baby girl. The true light of my life. Nick is my rock, and Bella is the sunshine on my face. =)
So what did I learn today? Well it looks like I may have fewer eggs for harvest than originally believed. I'm trying not to think about this as anything since we are creating these embryos for a reason. It isn't a bad thing if we "have" to use them. They counted 9 eggs today, which is significantly fewer than the 16 on Tuesday, and the 18 last week. I guess at certain points of your cycle your eggs and blood vessels look very much the same, so it can be a little hard to tell. We really won't know until the harvest anyhow. Really- we only need one, and it would be nice to have maybe 5 viable embryos "just in case". So even with 9 clear eggs, that shouldn't be a problem. Most importantly we think that the harvest will occur on Tuesday of next week. So we are getting close!
We have also officially scheduled the start of chemotherapy. I will begin treatment on Monday, March 21st. So those of you who do energy work, pray, meditate, whatever, at 8:30 am on Monday the 21st, send it my way! See the Chemo seeking out those cancer cells (and only those cancer cells) and destroying them. Productive poison. =)
I'm still struggling with the emotions of this whole process. It really isn't something anyone could prepare you for, and I'm sure everyone is a little different in how they feel and respond to the situation. With that said it is definitely a roller coaster. One day it is fear of dying and leaving my family. The next day it is about my hair and appearance and all things vain to go along with that. The next is just the entire lack of clarity about what it means to be "a survivor". Today I described living with the diagnosis like having a bubble around your entire body. You are still physically capable of doing everything that you usually do, nothing has really changed, but you feel as though you are slightly detached from the rest of the world and if you hit something just hard enough, or catch just the right edge- you could pop. Probably a strange description, but it is the best I've got so far. =) I'm sure it will change along the way.
And on a happy note- here is a photo of my sweet baby girl. The true light of my life. Nick is my rock, and Bella is the sunshine on my face. =)
Wednesday, March 9, 2011
I may have an MD at the end of all this...
I feel like I'm gaining so much information through this process, I may qualify for my own doctorate at the end. Okay, maybe not an MD but how about a PhD in cancer, or at the very least a master's degree! =)
The diagnostics are done and we spoke to both my oncologist and surgeon today. First, I spoke with my surgeon who was following up with me regarding my MRI results. She told me that things look good, there is no sign that the cancer is entering the chest wall (which I was a little concerned about since I can feel the tumor pretty deep). She did say that there are two lymphnodes that look a little enlarged so she may have me get another ultrasound to see if they can find them, and if so to biopsy those. When I asked if the PET scan would give us an idea about the lymphnodes too she said yes, if the PET scan shows the area as completely "cold" then we could consider the area safe and I wouldn't need the additional biopsy. I let her know that the PET scan was complete and that the tech told me she should be able to see it online. She then looked it up and very informally said that it looked really good based on her quickly looking- seeing nothing but the known tumor. Of course that is not "news" because very easily a more thorough review could show just a faint glow where those lymphnodes are. So we will hold off on that "news" until we actually get it. The only other news from the MRI is that the tumor is approximately 4cm by 4.4cm. So it is pretty big. As I understand from my online research, once a single tumor reaches 5cm it is officially stage 3 cancer. Just under! phew! Also there appears to be a second small tumor right near the big one, and a small finger growing off the big one. What this information means is that they will definitely want to perform a mastectomy and not just a lumpectomy. If the tumor was the only one, and had totally clean lines there was a chance for a lumpectomy, but frankly the odds of local recurrence with this type of cancer is pretty high anyhow, so we probably would have taken this route regardless.
As for the oncologist, there isn't quite as much news. So we have decided not to pursue the Stanford trial because the doctor didn't feel like it was the best option for me (she wasn't against it, but not really for it either), and at the end of the day, driving down to Stanford for treatment would have really been a huge burden with Isabella. I felt like the quality of life would have really been compromised. That left the local trial if it was available, and the standard care. Well it sounds very much like the chance of the local trial being available isn't very good. So at this point I am assuming that I will just be doing the standard dose dense chemotherapy. I am disappointed and feel a little bit like maybe I am missing out on the best cutting edge treatment, but at the same time trust that I am making the right decision for myself and my family. There is a possibility that I would be allowed to join the trial late (so I may complete one or two weeks of the standard care, and then join the trial with the added drug). I'm not going to count on that (or an even less likely last minute approval of the trial for me to start with it), just because it is better for my mental health to focus on what is, not what might be.
So there you go. Lots of information. I'm hoping to have a better idea of a timeline for fertility after my appointment tomorrow too. Movement- it feels good. So start sending me "no hair loss" vibes now so that maybe, just maybe my hair won't fall out during chemo!
The diagnostics are done and we spoke to both my oncologist and surgeon today. First, I spoke with my surgeon who was following up with me regarding my MRI results. She told me that things look good, there is no sign that the cancer is entering the chest wall (which I was a little concerned about since I can feel the tumor pretty deep). She did say that there are two lymphnodes that look a little enlarged so she may have me get another ultrasound to see if they can find them, and if so to biopsy those. When I asked if the PET scan would give us an idea about the lymphnodes too she said yes, if the PET scan shows the area as completely "cold" then we could consider the area safe and I wouldn't need the additional biopsy. I let her know that the PET scan was complete and that the tech told me she should be able to see it online. She then looked it up and very informally said that it looked really good based on her quickly looking- seeing nothing but the known tumor. Of course that is not "news" because very easily a more thorough review could show just a faint glow where those lymphnodes are. So we will hold off on that "news" until we actually get it. The only other news from the MRI is that the tumor is approximately 4cm by 4.4cm. So it is pretty big. As I understand from my online research, once a single tumor reaches 5cm it is officially stage 3 cancer. Just under! phew! Also there appears to be a second small tumor right near the big one, and a small finger growing off the big one. What this information means is that they will definitely want to perform a mastectomy and not just a lumpectomy. If the tumor was the only one, and had totally clean lines there was a chance for a lumpectomy, but frankly the odds of local recurrence with this type of cancer is pretty high anyhow, so we probably would have taken this route regardless.
As for the oncologist, there isn't quite as much news. So we have decided not to pursue the Stanford trial because the doctor didn't feel like it was the best option for me (she wasn't against it, but not really for it either), and at the end of the day, driving down to Stanford for treatment would have really been a huge burden with Isabella. I felt like the quality of life would have really been compromised. That left the local trial if it was available, and the standard care. Well it sounds very much like the chance of the local trial being available isn't very good. So at this point I am assuming that I will just be doing the standard dose dense chemotherapy. I am disappointed and feel a little bit like maybe I am missing out on the best cutting edge treatment, but at the same time trust that I am making the right decision for myself and my family. There is a possibility that I would be allowed to join the trial late (so I may complete one or two weeks of the standard care, and then join the trial with the added drug). I'm not going to count on that (or an even less likely last minute approval of the trial for me to start with it), just because it is better for my mental health to focus on what is, not what might be.
So there you go. Lots of information. I'm hoping to have a better idea of a timeline for fertility after my appointment tomorrow too. Movement- it feels good. So start sending me "no hair loss" vibes now so that maybe, just maybe my hair won't fall out during chemo!
Tuesday, March 8, 2011
Diagnostics Done!
Hooray! Today I completed all of the diagnostics for my cancer. I will still do the genetic test to confirm whether or not I carry one of the two breast cancer genes (we think not, but you never know), but all of the actual tests that affect my current diagnosis and prognosis are done! I'm amazed at how grueling that process really was. It all started with the biopsy. Then I had the follow up mammogram and ultrasound on both breasts and surrounding area. Next came the bloodwork. The MRI happened after that, and today, I finished everything up with a PET scan. Phew- that was a lot.
Gratefully the PET scan was "no big deal" for me. They took me to the special CT trailer, hooked me up to an IV for some Fluorodeoxyglucose which is the radioactive material that the scanner uses to see heightened metabolic function (which would indicate cancer). I then had to sit for about an hour while the material worked its way through my body. I couldn't even play on my phone because that could affect how it settled! Then they put me in the machine for a baseline CT scan, put some Iodine into my IV, and then ran the PET scan (which is just the same as a CT scan, only longer). I was in the machine for about 40 minutes total. MUCH more comfortable than the MRI. Other than the normal response to the various IV materials (cool at first and warm from the Iodine), I didn't feel a thing.
I don't have any results to report, though they sent me away with a disk of the image. Yes I've looked- it is very very intersting, but I really don't want to even pretend to guess at the results. My gut tells me it looks fine, but too soon to tell. I can however call my doctor tomorrow for results. They should have the MRI results too. With all of this I can just focus on my fertility stuff, and then move on to chemo! Making progress folks.
Gratefully the PET scan was "no big deal" for me. They took me to the special CT trailer, hooked me up to an IV for some Fluorodeoxyglucose which is the radioactive material that the scanner uses to see heightened metabolic function (which would indicate cancer). I then had to sit for about an hour while the material worked its way through my body. I couldn't even play on my phone because that could affect how it settled! Then they put me in the machine for a baseline CT scan, put some Iodine into my IV, and then ran the PET scan (which is just the same as a CT scan, only longer). I was in the machine for about 40 minutes total. MUCH more comfortable than the MRI. Other than the normal response to the various IV materials (cool at first and warm from the Iodine), I didn't feel a thing.
I don't have any results to report, though they sent me away with a disk of the image. Yes I've looked- it is very very intersting, but I really don't want to even pretend to guess at the results. My gut tells me it looks fine, but too soon to tell. I can however call my doctor tomorrow for results. They should have the MRI results too. With all of this I can just focus on my fertility stuff, and then move on to chemo! Making progress folks.
Monday, March 7, 2011
Rapid Reality
It occurred to me today how quickly your "reality" can change. It wasn't even two weeks ago that the idea of breast cancer wouldn't have even slipped into my realm of reality. It took me a few days of feeling like I was in the worst April fools joke ever, but now I can say it is entrenched in my current reality, and will be a part of my forever story. I know that I will be a survivor, and that will become a part of my reality too, someday. Right now I am willing myself to just get there.
This morning I had my MRI. Sorry, no news on the results yet. They said it would be 4-5 days for the report, but my doctor could call the radiologist if they needed it sooner. I don't know if they will call or not, and even if they do if they will tell me. Since my PET scan is tomorrow, I'm hoping that I will get those results about the same time.
Speaking of the MRI- talk about an awful test. I knew I would be placed in the tiny tube, and also knew that the machine was very loud. What I didn't know what that this was an MRI with contrast (so they had to give me an IV with some lovely drugs in it- I frankly don't keep track at this point), and I really didn't know that I would feel the magnetic pulses. Apparently I'm strange in this experience (both Nick and my mom have had MRIs and didn't feel it like I did). I can only describe it as a similar feeling to using one of those electrode machines that pulsates your muscles. At certain points during the MRI I felt these sort of muscle spasms in my lower back. They didn't last long, but there was usually one big pulse and a couple of smaller ones following it. It definitely freaked me out. It also felt like the longest 4, 5 and 6 minutes ever.
I can only imagine that this MRI will be the least of my concerns very soon. Chemo has to be worse than an MRI right? But is it worse than pregnancy, labor and deliver? Probably... Finding out I was pregnant was probably the only other instant reality change that I've experienced in my life so far. One minute I was just Karey, the next I was going to be a mom. Now I'm becoming a Breast Cancer Survivor. I think I liked the other reality change a ton more.
This morning I had my MRI. Sorry, no news on the results yet. They said it would be 4-5 days for the report, but my doctor could call the radiologist if they needed it sooner. I don't know if they will call or not, and even if they do if they will tell me. Since my PET scan is tomorrow, I'm hoping that I will get those results about the same time.
Speaking of the MRI- talk about an awful test. I knew I would be placed in the tiny tube, and also knew that the machine was very loud. What I didn't know what that this was an MRI with contrast (so they had to give me an IV with some lovely drugs in it- I frankly don't keep track at this point), and I really didn't know that I would feel the magnetic pulses. Apparently I'm strange in this experience (both Nick and my mom have had MRIs and didn't feel it like I did). I can only describe it as a similar feeling to using one of those electrode machines that pulsates your muscles. At certain points during the MRI I felt these sort of muscle spasms in my lower back. They didn't last long, but there was usually one big pulse and a couple of smaller ones following it. It definitely freaked me out. It also felt like the longest 4, 5 and 6 minutes ever.
I can only imagine that this MRI will be the least of my concerns very soon. Chemo has to be worse than an MRI right? But is it worse than pregnancy, labor and deliver? Probably... Finding out I was pregnant was probably the only other instant reality change that I've experienced in my life so far. One minute I was just Karey, the next I was going to be a mom. Now I'm becoming a Breast Cancer Survivor. I think I liked the other reality change a ton more.
Saturday, March 5, 2011
Sometimes I just want....
Sometimes I just want to cry.
Sometimes I just want to turn back the clock and somehow make this situation never happen.
Sometimes I just want to pretend it isn't happening.
Sometimes I just want to demand answers.
It is amazing to me how quickly the anxiety and fears can kick in. I had a good day today- spent most of it with my girlfriends celebrating one of their birthdays. Almost the moment I arrived home I felt the mountain on my shoulders again. We took a short nap with Isabella, went to the store for movies and snacks, and put Isabella to bed. This is where I've found I'm most vulnerable to this disease.
Rocking my sweet baby girl to sleep is such a sweet quiet moment (yes, even when she is doing her usual fussing to sleep). I usually sing her a song, and hold her close. Then slowly as I think how wonderful the moment is, the "what ifs" start to creep in. What if this disease gets the best of me? What if my baby girl doesn't have her mommy to raise her? Every girl needs her mommy... And the tears start flowing.
I know that these are just fears and are not my reality, but the honest truth is that this is a big and scary disease. It can, and does, kill people. It breaks people's hearts and tears apart families. I personally know people who have that in their story. I also personally know people who are the survivors. I expect to be a survivor, but the fears sneak in every so often. I can't imagine being in my shoes and not feeling both the love and strength surrounding me, and the honest to god fears of this situation. Tonight, I'm feeling fearful. And I suppose that is okay.
Sometimes I just want to turn back the clock and somehow make this situation never happen.
Sometimes I just want to pretend it isn't happening.
Sometimes I just want to demand answers.
It is amazing to me how quickly the anxiety and fears can kick in. I had a good day today- spent most of it with my girlfriends celebrating one of their birthdays. Almost the moment I arrived home I felt the mountain on my shoulders again. We took a short nap with Isabella, went to the store for movies and snacks, and put Isabella to bed. This is where I've found I'm most vulnerable to this disease.
Rocking my sweet baby girl to sleep is such a sweet quiet moment (yes, even when she is doing her usual fussing to sleep). I usually sing her a song, and hold her close. Then slowly as I think how wonderful the moment is, the "what ifs" start to creep in. What if this disease gets the best of me? What if my baby girl doesn't have her mommy to raise her? Every girl needs her mommy... And the tears start flowing.
I know that these are just fears and are not my reality, but the honest truth is that this is a big and scary disease. It can, and does, kill people. It breaks people's hearts and tears apart families. I personally know people who have that in their story. I also personally know people who are the survivors. I expect to be a survivor, but the fears sneak in every so often. I can't imagine being in my shoes and not feeling both the love and strength surrounding me, and the honest to god fears of this situation. Tonight, I'm feeling fearful. And I suppose that is okay.
Clarity, or something like it
I'm almost done with my diagnostics. Slowly but surely I'm knocking off the various tests. I've completed a biopsy, mammograms, ultrasounds and blood tests. Monday I will have my MRI (which will officially size the tumor) and then Tuesday I will have my PET CT scan, which will confirm the absence of any additional cancer in my body. Once all of these results are in, I can temporarily focus on completing the fertility preservation before starting chemotherapy.
So what's all this fertility business? Well to start I am giving myself nightly shots of menopur and follistim which will enhance the maturation of all of the eggs my ovaries have ready for this cycle. This will also prevent one egg from "taking the lead" by continuing to have the hormones that mature the eggs produced (well- received through the shot), which means that the other eggs won't die off. Then there will be blood tests at various appointments (the first will be this Tuesday, which is the fifth day on these drugs, after four days of the shots being administered), which will determine if my hormones are trying to ovulate. If my body is trying to ovulate, then I will take a shot of another drug called Ganirelix which will prevent my body from ovulating so that the eggs can be retrieved directly from the ovary. I will take this for 4-6 days prior to egg retrieval. Finally, once it has been determined that my eggs are matured and we are ready to go, I will take an hCG Trigger shot. This is used for four primary purposes: Induce final maturation of the eggs, Cause the resumption of meiosis, Loosen the egg's attachment from the follicle wall, and Allow for the timing of the egg retrieval. This will be taken as close to 36 hours prior to egg retrieval as possible.
The doctor will then "harvest my eggs" using an ultrasound guided procedure. I will be in a twilight state (not general anesthesia but not conscious) for this procedure. Then they will use Nick's sperm and directly inject one sperm into each egg to create embryos. The embryos will then be cryogenically frozen until we are ready to use them at which time we would undergo the actual process of in vitro fertilization, having them implanted (not all of them! Just one or two) directly into my uterus.
I have to admit, this is proving to be a great distraction for me. I find the process fascinating and exciting. Since I've been lucky thus far with fertility, chances are if I hadn't gotten cancer I might never have experienced this. Not that I necessarily needed or wanted to go through this, but the scientist part of me really enjoys it. Plus we keep joking that we've always wanted twins and here's our chance to make that happen!
Meanwhile in the back of my mind I know we have to make some decisions about chemotherapy. I just don't know what I want to do. I think I might be avoiding making the decision because I am so clear that if the trial happens through my local office, then without question that is what I will do. It is just the question between Stanford's trial or the standard care chemo. This is where I wish I could wave a magic wand and just know what the right choice is.
On the emotional end of the spectrum I'm holding up fairly well. I'm working on staying present with Isabella, which means lots of play and cuddles and kisses. I'm also working on staying positive in the love and support I am receiving from all sides of my community. Daily I definitely have down periods where I feel the mountain on my shoulders again. Typically these come towards the end of the day when I've held it together for most of the day, and just need to let my guard down. Today though I had a mid-day let down and rallied for dinner with friends (thanks for the awesome dinner Matt and Lindsay and the hilarious conversation Russell and Colleen!).
Also some of the clarity I was mentioning in the title. My last post was definitely more negative than I intended. I by no means want to deter anyone from contacting me in any format. I am grateful beyond belief for the love and support I am receiving. Not many people are so lucky to experience how loved they are in their lifetime. And frankly if you are reading this blog, you probably have enough information that you don't have to ask me the questions that I feel like I'm answering over and over again ad nauseum. The questions you have are more likely things that I left out, or forgot, or simply didn't think to write about. And if I'm not feeling up to it, I won't answer the phone or reply to the message until I am again.
So here's to positivity and gratefulness and a smooth process over the coming months.
So what's all this fertility business? Well to start I am giving myself nightly shots of menopur and follistim which will enhance the maturation of all of the eggs my ovaries have ready for this cycle. This will also prevent one egg from "taking the lead" by continuing to have the hormones that mature the eggs produced (well- received through the shot), which means that the other eggs won't die off. Then there will be blood tests at various appointments (the first will be this Tuesday, which is the fifth day on these drugs, after four days of the shots being administered), which will determine if my hormones are trying to ovulate. If my body is trying to ovulate, then I will take a shot of another drug called Ganirelix which will prevent my body from ovulating so that the eggs can be retrieved directly from the ovary. I will take this for 4-6 days prior to egg retrieval. Finally, once it has been determined that my eggs are matured and we are ready to go, I will take an hCG Trigger shot. This is used for four primary purposes: Induce final maturation of the eggs, Cause the resumption of meiosis, Loosen the egg's attachment from the follicle wall, and Allow for the timing of the egg retrieval. This will be taken as close to 36 hours prior to egg retrieval as possible.
The doctor will then "harvest my eggs" using an ultrasound guided procedure. I will be in a twilight state (not general anesthesia but not conscious) for this procedure. Then they will use Nick's sperm and directly inject one sperm into each egg to create embryos. The embryos will then be cryogenically frozen until we are ready to use them at which time we would undergo the actual process of in vitro fertilization, having them implanted (not all of them! Just one or two) directly into my uterus.
I have to admit, this is proving to be a great distraction for me. I find the process fascinating and exciting. Since I've been lucky thus far with fertility, chances are if I hadn't gotten cancer I might never have experienced this. Not that I necessarily needed or wanted to go through this, but the scientist part of me really enjoys it. Plus we keep joking that we've always wanted twins and here's our chance to make that happen!
Meanwhile in the back of my mind I know we have to make some decisions about chemotherapy. I just don't know what I want to do. I think I might be avoiding making the decision because I am so clear that if the trial happens through my local office, then without question that is what I will do. It is just the question between Stanford's trial or the standard care chemo. This is where I wish I could wave a magic wand and just know what the right choice is.
On the emotional end of the spectrum I'm holding up fairly well. I'm working on staying present with Isabella, which means lots of play and cuddles and kisses. I'm also working on staying positive in the love and support I am receiving from all sides of my community. Daily I definitely have down periods where I feel the mountain on my shoulders again. Typically these come towards the end of the day when I've held it together for most of the day, and just need to let my guard down. Today though I had a mid-day let down and rallied for dinner with friends (thanks for the awesome dinner Matt and Lindsay and the hilarious conversation Russell and Colleen!).
Also some of the clarity I was mentioning in the title. My last post was definitely more negative than I intended. I by no means want to deter anyone from contacting me in any format. I am grateful beyond belief for the love and support I am receiving. Not many people are so lucky to experience how loved they are in their lifetime. And frankly if you are reading this blog, you probably have enough information that you don't have to ask me the questions that I feel like I'm answering over and over again ad nauseum. The questions you have are more likely things that I left out, or forgot, or simply didn't think to write about. And if I'm not feeling up to it, I won't answer the phone or reply to the message until I am again.
So here's to positivity and gratefulness and a smooth process over the coming months.
Thursday, March 3, 2011
Hiring...
Today I hit overwhelm. Managing this process is a full time job. The number of appointments to go to, and tests to run, and decisions to make, and adding care for my baby on top of that- I've decided I need a personal assistant. =) I'm sure someone wants a 24 hour a day, 7 day a week job with no pay and benefits including cancer jokes at inappropriate times and sweet baby laughter from Isabella. Sounds ideal, right? ;)
I have received lots of offers of help and am trying to navigate how to accept or ask for that. In some ways I'm really good at leaning on my support system, and in other ways I'm really terrible at it. I guess that is just one more lesson I get to learn in this process. Yay me, right? ;)
I'm also trying to navigate how to communicate with my loved ones. This blog is ideal for me- I get to post as it suits me, include information in my own time (and with the appropriately researched titles and spelling), and it is one shot to everyone. Well, almost anyway. The only issue I have found with this is that not everyone who wants to know is remember to read this. So I still get the phone calls and emails and text messages wondering about the details. I welcome these contacts of course, but after a long day of doctors appointments, it can be very draining to share the details of things that I may not even be entirely clear on yet. So then I may choose to not answer my phone/email/texts and then I wonder when I am going to return those messages.
I realize these are gold plated problems. Poor me, I have so many people who care about me that it is overwhelming. All the same it is a new experience to navigate while I try to manage the time consuming process I'm going through, and the emotional roller coaster that I'm riding. I wish this process came with an instruction book on how to best handle these situations.
I have received lots of offers of help and am trying to navigate how to accept or ask for that. In some ways I'm really good at leaning on my support system, and in other ways I'm really terrible at it. I guess that is just one more lesson I get to learn in this process. Yay me, right? ;)
I'm also trying to navigate how to communicate with my loved ones. This blog is ideal for me- I get to post as it suits me, include information in my own time (and with the appropriately researched titles and spelling), and it is one shot to everyone. Well, almost anyway. The only issue I have found with this is that not everyone who wants to know is remember to read this. So I still get the phone calls and emails and text messages wondering about the details. I welcome these contacts of course, but after a long day of doctors appointments, it can be very draining to share the details of things that I may not even be entirely clear on yet. So then I may choose to not answer my phone/email/texts and then I wonder when I am going to return those messages.
I realize these are gold plated problems. Poor me, I have so many people who care about me that it is overwhelming. All the same it is a new experience to navigate while I try to manage the time consuming process I'm going through, and the emotional roller coaster that I'm riding. I wish this process came with an instruction book on how to best handle these situations.
Showing off
A quick picture of Isabella showing off her new skill!
And just because she is too cute...
And playing with her blocks like a big girl!
Wednesday, March 2, 2011
Yay Bella!!!
I have to post some non-cancer related news as well. =) And this deserves a post of its own darnit!
Bella has learned to clap. She will "clap" (soundlessly still) and she looks so proud of herself when she does it. So we have started clapping with her when we see her clapping and saying "yay Bella!!!". This of course brings on more clapping and more adorable pride. This little girl is just such an angel baby. She is certainly my angel baby.
I have to say she is also getting really good at picking things up and doing with them as she pleases. Today she spent the day at my dad's house while we were running around to doctors appointments. When we arrived to pick her up we sat her on the floor for a minute while we filled in my dad on the days news. She sat and played with her toys (a small pot, a wooden spoon, a wooden reamer and her binky). As I was sitting on the floor playing with her, I realized she had picked up her binky several times, put it in her mouth (correctly), taken it back out, played with it, discarded it, and found it again. This is a new skill for sure. She's been trying to put the binky in her mouth for months, but usually ended up with the wrong part in her mouth.
Another new "trick" is her ability to find her butterflies in any room. Isabella has long loved her butterflies (they were on a mobile above her changing table until she got too big for it). I placed several on the ceiling in her room above the rocking chair and now Nick has taken several and placed them around the house in various locations. We can ask her "Bella, where are the butterflies?" and she will look around and find them. She knows where they are in some rooms (like her bedroom). It is very sweet. I can see her growing and getting smarter and smarter every single day.
How lucky I am to have such a joy in my life. Here are some pictures from the last couple of days of my sweet angel baby.
Bella has learned to clap. She will "clap" (soundlessly still) and she looks so proud of herself when she does it. So we have started clapping with her when we see her clapping and saying "yay Bella!!!". This of course brings on more clapping and more adorable pride. This little girl is just such an angel baby. She is certainly my angel baby.
I have to say she is also getting really good at picking things up and doing with them as she pleases. Today she spent the day at my dad's house while we were running around to doctors appointments. When we arrived to pick her up we sat her on the floor for a minute while we filled in my dad on the days news. She sat and played with her toys (a small pot, a wooden spoon, a wooden reamer and her binky). As I was sitting on the floor playing with her, I realized she had picked up her binky several times, put it in her mouth (correctly), taken it back out, played with it, discarded it, and found it again. This is a new skill for sure. She's been trying to put the binky in her mouth for months, but usually ended up with the wrong part in her mouth.
Another new "trick" is her ability to find her butterflies in any room. Isabella has long loved her butterflies (they were on a mobile above her changing table until she got too big for it). I placed several on the ceiling in her room above the rocking chair and now Nick has taken several and placed them around the house in various locations. We can ask her "Bella, where are the butterflies?" and she will look around and find them. She knows where they are in some rooms (like her bedroom). It is very sweet. I can see her growing and getting smarter and smarter every single day.
How lucky I am to have such a joy in my life. Here are some pictures from the last couple of days of my sweet angel baby.
Babies babies babies
Today Nick and I spent 8 hours going to, coming from and surviving doctors appointments. The first half of the day was a visit to the Fertility Preservation Clinic at UCSF. The second appointment was with my Oncologist.
The fertility appointment was a "dream" appointment (as much as anything can be a "dream" under these circumstances). We met with the doctor, he explained how fertility works, how the chemotherapy affects fertility, and what my options are. Then he took us into the exam room to check my ovaries for eggs. This is where the good news comes in. He "conservatively" estimated that I currently have 18 eggs in this cycle. This is an outstanding number and indicates that I am what we refer to as a fertile myrtle. =) This bodes well for my ability to get pregnant the old fashioned way post cancer. But since there is still a risk, Nick and I decided to move forward with the cryogenic freezing of embryos. This means I am now not only a cancer patient, but also an "infertility" patient. I begin my fertility drug regimen tomorrow night which involves me giving myself two shots every night. Then in approximately 10-12 days we will harvest the eggs and they will use intracytoplasmic sperm injection (ICSI) to turn my eggs into embryos. This process means they take one sperm and inject it directly into the egg to ensure fertilization (as opposed to just putting the eggs and sperm into a dish and letting them fertilize the semi old fashioned way). Based on the information we gathered today, the doctor thinks we could have as many as 15 embryos to freeze and ultimately transfer via IVF. That is a really great amount, especially since you really only need a couple for each transfer. We could create our own clan! =)
Then our second appointment was with my oncologist. I feel a little bit like we left with more questions than answers, but I'll tell you what I know. As I previously mentioned, we are starting with chemotherapy. I was under the impression that they wanted to send me to Stanford for a trial, but it is looking less likely that this will happen. I have a decision to make actually. The cancer center that I am working with is hopefully starting a trial of their own in the next 2-3 weeks that I could participate in. This would combine the standard of care for breast cancer along with the trial drug (I'll elaborate on this in a moment). If they do not get it started in time, I will not be able to participate because my doctor does not want to delay my treatment. In this case, we would have to decide between the standard of care on its own, or the Stanford trial, which uses different chemo drugs along with the trial drug.
The standard of care (according to my doctor) is called dose dense chemotherapy. This would involve me receiving two IV drugs once every two weeks for eight weeks (four cycles), and then one different drug once every two weeks for eight weeks (an additional four cycles). All in all this totals 16 weeks of chemotherapy treatment, which should mean I will be done by the end of June or beginning of July. If I participate in the trial the change would be the addition of a drug called a Parp-1 inhibitor, which is apparently extremely effective in cases of Triple Negative cancer (just not currently used and approved for the first line of defense, only for subsequent treatments). Also the second set of treatments would be every week at a lower dose. The Stanford trial uses a different set of drugs than the standard of care. I also am not sure if our health insurance would cover it (Stanford is out of network we believe, and it is "experimental" to boot). My oncologist doesn't seem to have a strong opinion outside of using standard of care (supported by statistics) and the parp-1 inhibitor (cutting edge drug for this type of cancer). So I have some decisions to make if I can't participate in the local trial (which I am really hoping I can at this point).
Once I complete my chemotherapy, I will still have surgery 4-8 weeks later. They are still advising a mastectomy because of the type of cancer that I have. Even if I have an amazing pathological response to the chemo and there is zero cancer left after, there is just too much data showing recurrence of this type of cancer if the tissue isn't removed. My doctor did acknowledge that the data is based on studies with chemo over the last 10-15 years. The drugs are much much better now, so it is possible that the data they are using isn't fully relevant today. I am leaning towards just going with the (single) mastectomy because it really isn't worth the risk. If I had no desire whatsoever to breastfeed even a little with future babies (you only need one breast!) I would probably let them cut them both out and get a nice new pair of tatas. =) But I am not really a believer in surgery for surgery's sake and at this point there is no indication for that.
So there you go! I still have an MRI (to best measure the tumor) and a PET scan (to verify no other cancerous activity anywhere in my body) before we call the diagnostics complete. Slowly but surely the fact finding is winding down and we are approaching action. Thank goodness. As totally exhausted as I was today from all of our appointments, I am grateful to have them out of the way. There will be plenty more to come (especially with the fertility treatments) but we will get there.
The fertility appointment was a "dream" appointment (as much as anything can be a "dream" under these circumstances). We met with the doctor, he explained how fertility works, how the chemotherapy affects fertility, and what my options are. Then he took us into the exam room to check my ovaries for eggs. This is where the good news comes in. He "conservatively" estimated that I currently have 18 eggs in this cycle. This is an outstanding number and indicates that I am what we refer to as a fertile myrtle. =) This bodes well for my ability to get pregnant the old fashioned way post cancer. But since there is still a risk, Nick and I decided to move forward with the cryogenic freezing of embryos. This means I am now not only a cancer patient, but also an "infertility" patient. I begin my fertility drug regimen tomorrow night which involves me giving myself two shots every night. Then in approximately 10-12 days we will harvest the eggs and they will use intracytoplasmic sperm injection (ICSI) to turn my eggs into embryos. This process means they take one sperm and inject it directly into the egg to ensure fertilization (as opposed to just putting the eggs and sperm into a dish and letting them fertilize the semi old fashioned way). Based on the information we gathered today, the doctor thinks we could have as many as 15 embryos to freeze and ultimately transfer via IVF. That is a really great amount, especially since you really only need a couple for each transfer. We could create our own clan! =)
Then our second appointment was with my oncologist. I feel a little bit like we left with more questions than answers, but I'll tell you what I know. As I previously mentioned, we are starting with chemotherapy. I was under the impression that they wanted to send me to Stanford for a trial, but it is looking less likely that this will happen. I have a decision to make actually. The cancer center that I am working with is hopefully starting a trial of their own in the next 2-3 weeks that I could participate in. This would combine the standard of care for breast cancer along with the trial drug (I'll elaborate on this in a moment). If they do not get it started in time, I will not be able to participate because my doctor does not want to delay my treatment. In this case, we would have to decide between the standard of care on its own, or the Stanford trial, which uses different chemo drugs along with the trial drug.
The standard of care (according to my doctor) is called dose dense chemotherapy. This would involve me receiving two IV drugs once every two weeks for eight weeks (four cycles), and then one different drug once every two weeks for eight weeks (an additional four cycles). All in all this totals 16 weeks of chemotherapy treatment, which should mean I will be done by the end of June or beginning of July. If I participate in the trial the change would be the addition of a drug called a Parp-1 inhibitor, which is apparently extremely effective in cases of Triple Negative cancer (just not currently used and approved for the first line of defense, only for subsequent treatments). Also the second set of treatments would be every week at a lower dose. The Stanford trial uses a different set of drugs than the standard of care. I also am not sure if our health insurance would cover it (Stanford is out of network we believe, and it is "experimental" to boot). My oncologist doesn't seem to have a strong opinion outside of using standard of care (supported by statistics) and the parp-1 inhibitor (cutting edge drug for this type of cancer). So I have some decisions to make if I can't participate in the local trial (which I am really hoping I can at this point).
Once I complete my chemotherapy, I will still have surgery 4-8 weeks later. They are still advising a mastectomy because of the type of cancer that I have. Even if I have an amazing pathological response to the chemo and there is zero cancer left after, there is just too much data showing recurrence of this type of cancer if the tissue isn't removed. My doctor did acknowledge that the data is based on studies with chemo over the last 10-15 years. The drugs are much much better now, so it is possible that the data they are using isn't fully relevant today. I am leaning towards just going with the (single) mastectomy because it really isn't worth the risk. If I had no desire whatsoever to breastfeed even a little with future babies (you only need one breast!) I would probably let them cut them both out and get a nice new pair of tatas. =) But I am not really a believer in surgery for surgery's sake and at this point there is no indication for that.
So there you go! I still have an MRI (to best measure the tumor) and a PET scan (to verify no other cancerous activity anywhere in my body) before we call the diagnostics complete. Slowly but surely the fact finding is winding down and we are approaching action. Thank goodness. As totally exhausted as I was today from all of our appointments, I am grateful to have them out of the way. There will be plenty more to come (especially with the fertility treatments) but we will get there.
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