Again, like when I was first diagnosed, I am having a difficult time turning my brain off. Not just when I am trying to sleep, but just in general. It is not only driving me nuts, but John as well. I end up not being able to focus on anything. It is just a big circle of hot mess. :) My thought process is just one big train wreck. I go from fun things I want to do to telling myself that I have to empty the dishwasher to trying to remember Henry's soccer practice and then wanting to breathe into a paper bag- all in a 4 second time frame. Over and over and then end up not emptying the dish washer, forgetting Henry's cleats etc. Gah!
I have clearly repeated " Lord please help me focus" a million times since I was putting on Margo's shoes and asked her to hold still and she promptly said " Lawrd, please help me focUS!!" Haha
The response from everyone has been wonderfully overwhelming. Thank you. As I have said, when I know what we need, you all will be the first to know! I have completely put my pride aside because honestly, I need each and every one of you. For prayers, for laughs, for rides, for food, for child care, for strong shoulders and ears to hear my sobs after one of the children asks me to promise her I am not going to die and I can't promise her that. Thank you for your cards. For all of the masses being said and scheduled for our family. Thank you to my absolute best friend from high school Debbie Doodles for flying in last week and spending an entire day entertaining me with stories and hugs and tears and gut wrenching laughter. She has saved my mental health more times than I can count over the years and I just love her to pieces!
For right now, my biggest comfort is all of your prayers. Honestly, it is unbelievably comforting and humbling. They are needed. John and I need to really sit down and discuss all of this going on in our life. We are just right now trying to keep our heads above water trying to even fathom and grasp that our family is at war with cancer again. We are ready for the fight!
Wow, for sitting at my favorite coffee place by myself, this is getting a little heavy! The truth hurts. :)
We have been on Spring break this week and the kids have been having such fun with friends and play dates. The weather has been beautiful. Off to pick up Margo and try and get some things done!
Thursday, April 24, 2014
Monday, April 21, 2014
IU chemo... It's the cool thing to do...
I would love to apologize for not posting sooner but honestly, events with my children are taking precedence over everything. By events I mean soccer, baseball, soccer, soccer... Reading, coloring, shopping etc.
I need to start with again the biggest thank you I can muster. Overwhelmed by kindness from all of you is such an understatement. Why I am surprised again by the amount of love and prayer is beyond me. But thank you. I need it, our entire family needs it.
Our meeting with my new oncologist last Wednesday went incredibly well. So well in fact, I ended up having my new chemo there ( IU Simon Cancer Center) that day! It was kind of like going into labor- you are never quite prepared for it but there's no turning back at that point. :)
The new chemo I am on is called Carboplatin. Most probably no hair loss but definitely nausea. I can attest to the nausea- it has not been pretty. I will have it at IU every three weeks. The next one is scheduled for May 7th which I think is good luck as it is one of my favorite persons birthdays. (Holla Mr. R.!) John is going with me for that round but yes, I will be needing rides... Well, for the rest of my life since that is how long chemo will last. Ahem... Yes you read that right and yes, I am stressed, and yes, the thought of it all is very daunting. As the new Dr. Explained it... I will have this chemo every three weeks- as long as it's working. And then when it stops, I will go onto another chemo until that stops working etc. etc. etc. sigh. While I am finding the thought of all of this enormously stressful,#breathingintoapaperbag. I am also incredibly grateful that such medicine and knowledge exists.
I again have so much more to tell you but surprise surprise, soccer practice calls!
Thank you everyone- I love you bunches.
I need to start with again the biggest thank you I can muster. Overwhelmed by kindness from all of you is such an understatement. Why I am surprised again by the amount of love and prayer is beyond me. But thank you. I need it, our entire family needs it.
Our meeting with my new oncologist last Wednesday went incredibly well. So well in fact, I ended up having my new chemo there ( IU Simon Cancer Center) that day! It was kind of like going into labor- you are never quite prepared for it but there's no turning back at that point. :)
The new chemo I am on is called Carboplatin. Most probably no hair loss but definitely nausea. I can attest to the nausea- it has not been pretty. I will have it at IU every three weeks. The next one is scheduled for May 7th which I think is good luck as it is one of my favorite persons birthdays. (Holla Mr. R.!) John is going with me for that round but yes, I will be needing rides... Well, for the rest of my life since that is how long chemo will last. Ahem... Yes you read that right and yes, I am stressed, and yes, the thought of it all is very daunting. As the new Dr. Explained it... I will have this chemo every three weeks- as long as it's working. And then when it stops, I will go onto another chemo until that stops working etc. etc. etc. sigh. While I am finding the thought of all of this enormously stressful,#breathingintoapaperbag. I am also incredibly grateful that such medicine and knowledge exists.
I again have so much more to tell you but surprise surprise, soccer practice calls!
Thank you everyone- I love you bunches.
Friday, April 11, 2014
Difficult words...
I often tell the children "Once the words come out of your mouth, you can't take them back. Make sure you choose them wisely."
It has been a very difficult couple of weeks. More than I could have imagined. So much so, I am having an incredibly difficult time putting it all into words. It all deserves more than just this one post (except my 24 hours with food poisoning, we can all just skip over those details!) so I am going to be spreading them out. If I don't, I think I might just crumble.
There is a story behind these facts- how they came about, how we found out, and what our "next step" is... but again, like a band aid, let's just get down to it.
My cancer has spread not only to the lymph nodes in my neck but we also found out that it has spread to the lymph nodes around my sternum. I was originally and mistakenly told that we were only dealing with the original lymph nodes in my neck.
Since it has spread to more than one place in my body, I am now considered to have stage IV breast cancer. Stage IV is incurable yet survivable! That is what my plan is. Many survive quite a while with stage IV cancer. To say that John and I were devastated is a huge understatement. We are honestly just numb. Because of many issues with communication or the lack there of, I will no longer be working with my previous oncologist. As I have said many times in the last few weeks- this is not a hangnail we are talking about, it is my LIFE. There is no room for error.
I have been referred to an oncologist in Indianapolis and we meet with her next Wednesday for a game plan. She is nationally recognized for her work and research with breast cancer. I am forever indebted to my surgeon Dr. H for not only taking me under her wing but for coordinating this meeting so quickly. Her compassion and understanding the severity of the situation. Many people have described her as an angel. After the discussions I have had with her, I completely agree with them.
I hate telling you all about this. I feel like I am not only hurting the ones I love, but also disappointing you. So many prayers you have put forth. So many thoughtful gifts, cards and many with your precious time. I am not going to say I'm sorry because I need you all and every person you know to literally and constantly storm heaven for us- our entire family. That is what we need the most right now.
It has been a very difficult couple of weeks. More than I could have imagined. So much so, I am having an incredibly difficult time putting it all into words. It all deserves more than just this one post (except my 24 hours with food poisoning, we can all just skip over those details!) so I am going to be spreading them out. If I don't, I think I might just crumble.
There is a story behind these facts- how they came about, how we found out, and what our "next step" is... but again, like a band aid, let's just get down to it.
My cancer has spread not only to the lymph nodes in my neck but we also found out that it has spread to the lymph nodes around my sternum. I was originally and mistakenly told that we were only dealing with the original lymph nodes in my neck.
Since it has spread to more than one place in my body, I am now considered to have stage IV breast cancer. Stage IV is incurable yet survivable! That is what my plan is. Many survive quite a while with stage IV cancer. To say that John and I were devastated is a huge understatement. We are honestly just numb. Because of many issues with communication or the lack there of, I will no longer be working with my previous oncologist. As I have said many times in the last few weeks- this is not a hangnail we are talking about, it is my LIFE. There is no room for error.
I have been referred to an oncologist in Indianapolis and we meet with her next Wednesday for a game plan. She is nationally recognized for her work and research with breast cancer. I am forever indebted to my surgeon Dr. H for not only taking me under her wing but for coordinating this meeting so quickly. Her compassion and understanding the severity of the situation. Many people have described her as an angel. After the discussions I have had with her, I completely agree with them.
I hate telling you all about this. I feel like I am not only hurting the ones I love, but also disappointing you. So many prayers you have put forth. So many thoughtful gifts, cards and many with your precious time. I am not going to say I'm sorry because I need you all and every person you know to literally and constantly storm heaven for us- our entire family. That is what we need the most right now.
Wednesday, April 2, 2014
The hip bone's connected to the thigh bone...
Received the all clear on my bone scan today! Thank to so much for your prayers! Please keep the prayers coming... I have my ultrasound guided biopsy beginning at 7:15 tomorrow morning and my PET scan at 12:15 tomorrow afternoon!
Just so grateful for all of you. #feelingthelove! :)
Just so grateful for all of you. #feelingthelove! :)
Tuesday, April 1, 2014
Faith...
It has been a tiring week. Full of tears, hugs, questions and prayers. I am sitting outside Panera waiting on Melissa whom John and I are so blessed to have as a friend. I was just at B North getting an injection for my bone scan and didn't know I have a 3 hour wait for the radioactive injection to"do its thing" so a call to Miss and Panera it is. It is an absolutely glorious day and sitting in the sun is wonderful.
I want to tell you about our (John,Melissa and myself) meeting with my surgeon but first want to get down my thoughts and feelings about this past week. I found out about my CT scan being positive for cancer last Thursday while driving. It was about 12:40 and I found out in a very round about way and a day early...the Surgeons office was notified by oncologist office to schedule biopsy and ultrasound. Clearly, they knew something I didn't. While driving, I ended up in front of Coffee Please ( one of my favorite haunts for my beloved coffee) but I could see people I knew inside and was a mess. Outside, I called John... We were both just dumbfounded. There was no use coming home as I wasn't there and said I was going to call Melissa... See a pattern here? :) it stresses me out that John works so hard and we are going to have to again choose his time off wisely because of me. Any who, while talking/ sobbing to Melissa, I ended up driving to 1/2 price. Books because I was going right in there and buying all of their Kicking Cancers Ass with Food cookbooks dammit! Again, Melissa strongly suggested I carefully drive home. So I pulled out of that parking lot and drove to Starbucks because if I wasn't going to start eating completely organic and sugar and caffeine free rightthatminute! I better get myself a coffee! :) The person in front of me in line paid for my coffee. Love.
I made it home in one piece and called another close friend yet while sobbing to her, I looked at the clock and suddenly realized it was 10 minutes before the school mass was to begin and Henry was bringing up the gifts and I had promised him 2000 times I would be there. I was So mad! I was SO mad a my body! I was SO mad that I had JUST gone through all of this! I had just put all of my friends and family through all of this! I was shaking I was just so completely angry. I was angry at God. As I was walking into church, I literally said out loud " God, I am NOT walking in here for you. I am here for my sweet boy because of a promise I made to him!" I was a mess and tried unsuccessfully to hold it together. Thank goodness for friends/parents around me knowing that something was very wrong and praying for me. I love the school masses and the message that day was to listen for Jesus and not harden your heart. Wow... I was still angry but this was my first message... A very clear message that I am going to need this church, these friends and especially God to walk this scary path again.
As many of you know, I love blogs and my blog "peeps" many of my very good friends are people I have met through the blogging world (hollah GW ladies!) So when I was diagnosed in July, I became pretty active on some breast cancer discussion boards. One being for Christian women dealing/living with breast cancer. After posting for prayer requests, I also posted my new diagnosis and was very honest about my anger and sadness. Again, I was amazed at my comfort feeling so many praying not only for myself but for John and the children. Another wow moment was one of the ladies that I really admire on the breast cancer board sent me an email. She wrote such encouraging words that have completely stuck with me.
" You are allowed to be angry but you also need to dig deep and feel your Faith. Anger is a very slippery slope to go down and one that is not easy to climb out of..."
I can't tell you how many times I have gone back to read her email. I have lost count how many times I have repeated this to myself this past week. One of the most powerful messages I think I have ever received.
Off to have my bone scan...
I want to tell you about our (John,Melissa and myself) meeting with my surgeon but first want to get down my thoughts and feelings about this past week. I found out about my CT scan being positive for cancer last Thursday while driving. It was about 12:40 and I found out in a very round about way and a day early...the Surgeons office was notified by oncologist office to schedule biopsy and ultrasound. Clearly, they knew something I didn't. While driving, I ended up in front of Coffee Please ( one of my favorite haunts for my beloved coffee) but I could see people I knew inside and was a mess. Outside, I called John... We were both just dumbfounded. There was no use coming home as I wasn't there and said I was going to call Melissa... See a pattern here? :) it stresses me out that John works so hard and we are going to have to again choose his time off wisely because of me. Any who, while talking/ sobbing to Melissa, I ended up driving to 1/2 price. Books because I was going right in there and buying all of their Kicking Cancers Ass with Food cookbooks dammit! Again, Melissa strongly suggested I carefully drive home. So I pulled out of that parking lot and drove to Starbucks because if I wasn't going to start eating completely organic and sugar and caffeine free rightthatminute! I better get myself a coffee! :) The person in front of me in line paid for my coffee. Love.
I made it home in one piece and called another close friend yet while sobbing to her, I looked at the clock and suddenly realized it was 10 minutes before the school mass was to begin and Henry was bringing up the gifts and I had promised him 2000 times I would be there. I was So mad! I was SO mad a my body! I was SO mad that I had JUST gone through all of this! I had just put all of my friends and family through all of this! I was shaking I was just so completely angry. I was angry at God. As I was walking into church, I literally said out loud " God, I am NOT walking in here for you. I am here for my sweet boy because of a promise I made to him!" I was a mess and tried unsuccessfully to hold it together. Thank goodness for friends/parents around me knowing that something was very wrong and praying for me. I love the school masses and the message that day was to listen for Jesus and not harden your heart. Wow... I was still angry but this was my first message... A very clear message that I am going to need this church, these friends and especially God to walk this scary path again.
As many of you know, I love blogs and my blog "peeps" many of my very good friends are people I have met through the blogging world (hollah GW ladies!) So when I was diagnosed in July, I became pretty active on some breast cancer discussion boards. One being for Christian women dealing/living with breast cancer. After posting for prayer requests, I also posted my new diagnosis and was very honest about my anger and sadness. Again, I was amazed at my comfort feeling so many praying not only for myself but for John and the children. Another wow moment was one of the ladies that I really admire on the breast cancer board sent me an email. She wrote such encouraging words that have completely stuck with me.
" You are allowed to be angry but you also need to dig deep and feel your Faith. Anger is a very slippery slope to go down and one that is not easy to climb out of..."
I can't tell you how many times I have gone back to read her email. I have lost count how many times I have repeated this to myself this past week. One of the most powerful messages I think I have ever received.
Off to have my bone scan...
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