I am not really sure if I should “count” Mondays as a chemo being as it is a parp and not really chemo. But my thoughts are – if I am getting poked in the port, it is a treatment.
I am very happy to say that last Friday was MUCH better than the first and today being my second Monday there; it is getting better every day. The nurses are just as kind and loving as the other office and I am starting to get know to them - which does make it easier.
It seems my new schedule of events are: Friday – treatment…tired after treatment and am ready for bed around 7:30 or 8:00, Saturday – sleep in and feel pretty good…start going downhill around 4:00, Sunday – feel a little more queasy…if I take medicine to make me not feel queasy I pass out for 2.5 – 3 hours, Monday – parp treatment and tired at night…I am tired but not down and out and each day seems to get a little better than the last. I have learned that going to be around 8:00 – 8:30 is just the easiest way for me to feel better quicker – not exciting but worth it.
We are heading out of town, so don’t be alarmed when I don’t write for over a week – the wolves haven’t taken over! Speaking of the wolves, your comments mean a lot to me. I have taken these little pieces to heart and really know they are words of truth and love. I am learning to be gentle with myself – I am hoping on vacation I can spend some time healing both physically and emotionally. And I need to remind myself we are all in a process of understanding and loving ourselves and each other – it doesn’t just happen without work and more than likely even after doing a lot work…it still takes more work.
I live with stage IV metastatic breast cancer that has caused 3 brain surgeries and leukemia that required a bone marrow transplant. . I like to write about life - and I don't hold back! My mission is to always remind myself and others anything is possible,
Monday, August 29, 2011
Saturday, August 27, 2011
Two Wolves
In church a few weeks ago our opening prayer was started off with a story, like it is every week. This story was about an old Indian man telling his grandson of the legend of every person having two wolves in him/her fighting to survive. One wolf represents all the good in us – our spirit God gave, joy, hope, love, dreams, gratitude, charity of our hearts, etc. – the other wolf represents the opposite – greed, hate, fear, jealousy, etc.
The grandson asked the grandfather, which one wins. The grandfather simply said, “The one you feed.”
I feel like the “bad” wolf has been winning in me lately in so many ways – and it has not been a good feeling – at all.
So many ugly feelings have been slowly creeping into me and I guess I kept feeding them until I felt like that was all I had in me. Guilt: I have guilt over so many things – things I didn’t even know I could have guilt over…Ian, I feel guilty I can’t be the mom I want to be to him – some days I don’t feel like playing, I don’t feel like doing anything and I feel guilty about that. To Eric…I feel guilty about me not being a healthy wife to help him more. Me…I feel guilty towards myself for not nurturing myself the way I think I should be – like painting more, cooking better, even just walking 30 minutes a day and so much more. I have also felt jealousy towards most everybody. I am jealous of their health, of their problems – just wishing their problems were my only problems, jealous of their “easy” lives.
The good wolf has tried to tell me that I don’t know what their lives really are like, that I am doing all I can at this point, but hearing those little whispers of truth while also hearing the giant roars of the negative – well, it is hard to hear them much less believe them.
What makes it easier at times to hear one wolf over the other and only believe what that wolf is telling us? I feel like some days I have the will and grace to do what needs to be done, to believe everything will be ok, to lean on God and other days, well I don’t – I don’t know what happens during the night or when I wake up to make those days harder – to make me not believe it will all be ok, to make me not feel up to anything, to let me question God and His love for me – I don’t know, I sure wish I did. I don’t know.
Please pray that the good wolf continues to win in me, that I continue to have grace & strength as the days get a little harder and I always know that God loves me – which I know he does…sometimes I just need a little reminding.
The grandson asked the grandfather, which one wins. The grandfather simply said, “The one you feed.”
I feel like the “bad” wolf has been winning in me lately in so many ways – and it has not been a good feeling – at all.
So many ugly feelings have been slowly creeping into me and I guess I kept feeding them until I felt like that was all I had in me. Guilt: I have guilt over so many things – things I didn’t even know I could have guilt over…Ian, I feel guilty I can’t be the mom I want to be to him – some days I don’t feel like playing, I don’t feel like doing anything and I feel guilty about that. To Eric…I feel guilty about me not being a healthy wife to help him more. Me…I feel guilty towards myself for not nurturing myself the way I think I should be – like painting more, cooking better, even just walking 30 minutes a day and so much more. I have also felt jealousy towards most everybody. I am jealous of their health, of their problems – just wishing their problems were my only problems, jealous of their “easy” lives.
The good wolf has tried to tell me that I don’t know what their lives really are like, that I am doing all I can at this point, but hearing those little whispers of truth while also hearing the giant roars of the negative – well, it is hard to hear them much less believe them.
What makes it easier at times to hear one wolf over the other and only believe what that wolf is telling us? I feel like some days I have the will and grace to do what needs to be done, to believe everything will be ok, to lean on God and other days, well I don’t – I don’t know what happens during the night or when I wake up to make those days harder – to make me not believe it will all be ok, to make me not feel up to anything, to let me question God and His love for me – I don’t know, I sure wish I did. I don’t know.
Please pray that the good wolf continues to win in me, that I continue to have grace & strength as the days get a little harder and I always know that God loves me – which I know he does…sometimes I just need a little reminding.
Sunday, August 21, 2011
Chemo Chronicle 3.3
It was a hard day.
I admit it – I don’t do well with change….AT ALL! I like to know what is going to happen, where I am going, what it looks like, etc. Yes, Ian is just like me in regards to this and I felt a little like a lost 4 year old Friday when we walked into the office in Round Rock. My Dr. moved offices to a new location and today was the first day there….I am still not sure about it all – as with most new things.
It is a lot smaller but it is oddly too small – I know, weird. The infusion room is a lot louder due to the smaller size and it doesn’t seem things here are as streamlined as they were at the old office. Eric keeps telling me that this is just as new to them as it is to me – which is true. They had to hire a whole slew of people to come over to this office since they just made it bigger.
That was just the start of the hard day. With my new infusion of BSI (trial drug) it adds another hour onto the infusion. So now a normal Friday infusion will be at least 3.5 hours and when I have to get Zometa (bone stuff) it will be around 4.5 – 5 hrs. We checked in at 8:15 to see my Dr. and didn’t leave until 2:00 and it wasn’t even a Zometa day.
The whole time I was sitting in the infusion chair all I could think about was how in the world are we going to make this work with Ian’s school? His school will be from 9:30 – 2:30 – there is no way I can drop him off and pick him up on Fridays. Yes Eric can do one/both of them, but how long is his work going to be cool with him practically not coming in on Fridays? How long can he run around ragged like this? Yes these are the things that run loops through my head on a daily basis. I am not worried about me – I am worried about Eric and Ian.
I admit it – I don’t do well with change….AT ALL! I like to know what is going to happen, where I am going, what it looks like, etc. Yes, Ian is just like me in regards to this and I felt a little like a lost 4 year old Friday when we walked into the office in Round Rock. My Dr. moved offices to a new location and today was the first day there….I am still not sure about it all – as with most new things.
It is a lot smaller but it is oddly too small – I know, weird. The infusion room is a lot louder due to the smaller size and it doesn’t seem things here are as streamlined as they were at the old office. Eric keeps telling me that this is just as new to them as it is to me – which is true. They had to hire a whole slew of people to come over to this office since they just made it bigger.
That was just the start of the hard day. With my new infusion of BSI (trial drug) it adds another hour onto the infusion. So now a normal Friday infusion will be at least 3.5 hours and when I have to get Zometa (bone stuff) it will be around 4.5 – 5 hrs. We checked in at 8:15 to see my Dr. and didn’t leave until 2:00 and it wasn’t even a Zometa day.
The whole time I was sitting in the infusion chair all I could think about was how in the world are we going to make this work with Ian’s school? His school will be from 9:30 – 2:30 – there is no way I can drop him off and pick him up on Fridays. Yes Eric can do one/both of them, but how long is his work going to be cool with him practically not coming in on Fridays? How long can he run around ragged like this? Yes these are the things that run loops through my head on a daily basis. I am not worried about me – I am worried about Eric and Ian.
Wednesday, August 17, 2011
Acceptance…
We booked a trip to Michigan for my next off week. We had been holding off booking any trips until “this” was all over, but I think we are now accepting the fact that “this” might never really be over – that I could possibly be on some sort of chemo for a very long time and that is not an easy thing to accept by any means.
I am still trying to accept that Ian will one day have to learn to accept his mommy has cancer and our life will inevitably be much different than the lives of his friends.
I have accepted that wine is no longer in my bag of tricks and food is now for fuel and not for an emotional crutch.
I am still trying to accept that I might possibly be bald for the rest of my life.
I am learning to accept emotional support from others and not try to be so strong all the time. I have been doing better and if I feel like crying to whomever, I cry…I don’t try to hold it back. I even let Gina hug me while I was crying the other day at swim school – that is emotional progress for me!
I have accepted our family of three is just perfect.
Accepting that this life is now my life…our life - has not been easy – I had been in denial for many months – I admit it. I kept thinking that the 4 months of my first chemo was going to be it, I could wash my hands of this again and go on. I am truly now accepting that scenario, as awesome as it would have been, it not the case.
I am still trying to accept that Ian will one day have to learn to accept his mommy has cancer and our life will inevitably be much different than the lives of his friends.
I have accepted that wine is no longer in my bag of tricks and food is now for fuel and not for an emotional crutch.
I am still trying to accept that I might possibly be bald for the rest of my life.
I am learning to accept emotional support from others and not try to be so strong all the time. I have been doing better and if I feel like crying to whomever, I cry…I don’t try to hold it back. I even let Gina hug me while I was crying the other day at swim school – that is emotional progress for me!
I have accepted our family of three is just perfect.
Accepting that this life is now my life…our life - has not been easy – I had been in denial for many months – I admit it. I kept thinking that the 4 months of my first chemo was going to be it, I could wash my hands of this again and go on. I am truly now accepting that scenario, as awesome as it would have been, it not the case.
Sunday, August 14, 2011
The big 4!!
Well, just like Christmas birthdays come and go super fast. This one was no different, but I am VERY happy to say that it lived up to all the expectations Ian had for it. He told both me and Eric that this was the best birthday ever – not really sure he remembers the others, but it made me heart smile.
We had a great birthday weekend. My mom, sister and nephews were here to help Ian celebrate and he couldn’t have been happier.
Now we are in the midst of a toy cleanout – man alive, how do we have so many toys?
Here is a link to the snapfish pictures from the big 4th birthday!
I have also started writing Ian letters (per Gina's suggestion of why not) This is the one I wrote him for his birthday:
Dear Ian
Wow – I really can’t believe that you are 4 years old today.
You amaze me daily with your loving heart, sweet nature and ability to make me laugh! You become more empathic daily being concerned with other’s feelings and well being. If someone is hurt or needs help, you are the first to run and tell me. You play really well with your friends with the occasional “fight.” I have tried to tell you if someone hits or pushes you first that it is okay to hit/push back to stick up for yourself, but you aren’t big on this. You aren’t a fighter in one little bit. You are a lover and want everyone to peaceful and just get along.
You always know just what to do to make me laugh – even if you are getting in trouble – which is really not very often at all. You have this dance you do that no matter what is happening will make me laugh out loud. You often do this dance just to make me laugh. I can tell making me laugh is one of your priorities and I must admit that I do love it.
You already have a little engineer’s mind. You want to know how everything works and sometimes I have to tell you that you need to ask daddy because I honestly don’t know how it all works. You love to play games and hate to lose. I try to explain winning isn’t everything, but you don’t want to hear it. You don’t really like to play by yourself yet, so we play together most of the time when we are at home. You love daddy telling you stories at night, anyone reading you books, chocolate milk, grape juice, apples slices, talking all the time and so much more.
I can say this summer you all officially learned to swim on your own – you even jump off the diving board by yourself. Of course daddy was the first one of us to let you do it because even though I knew you could, it made me nervous.
You are the light of my life and I love you with all my heart. I can’t wait to see you grow up my little man.
Love,
Mommy
We had a great birthday weekend. My mom, sister and nephews were here to help Ian celebrate and he couldn’t have been happier.
Now we are in the midst of a toy cleanout – man alive, how do we have so many toys?
Here is a link to the snapfish pictures from the big 4th birthday!
I have also started writing Ian letters (per Gina's suggestion of why not) This is the one I wrote him for his birthday:
Dear Ian
Wow – I really can’t believe that you are 4 years old today.
You amaze me daily with your loving heart, sweet nature and ability to make me laugh! You become more empathic daily being concerned with other’s feelings and well being. If someone is hurt or needs help, you are the first to run and tell me. You play really well with your friends with the occasional “fight.” I have tried to tell you if someone hits or pushes you first that it is okay to hit/push back to stick up for yourself, but you aren’t big on this. You aren’t a fighter in one little bit. You are a lover and want everyone to peaceful and just get along.
You always know just what to do to make me laugh – even if you are getting in trouble – which is really not very often at all. You have this dance you do that no matter what is happening will make me laugh out loud. You often do this dance just to make me laugh. I can tell making me laugh is one of your priorities and I must admit that I do love it.
You already have a little engineer’s mind. You want to know how everything works and sometimes I have to tell you that you need to ask daddy because I honestly don’t know how it all works. You love to play games and hate to lose. I try to explain winning isn’t everything, but you don’t want to hear it. You don’t really like to play by yourself yet, so we play together most of the time when we are at home. You love daddy telling you stories at night, anyone reading you books, chocolate milk, grape juice, apples slices, talking all the time and so much more.
I can say this summer you all officially learned to swim on your own – you even jump off the diving board by yourself. Of course daddy was the first one of us to let you do it because even though I knew you could, it made me nervous.
You are the light of my life and I love you with all my heart. I can’t wait to see you grow up my little man.
Love,
Mommy
Wednesday, August 10, 2011
Pictures, trials, birthdays – oh my!
I have a feeling this is going to be all over the place – sorry in advance.
Pictures: My neighbor Holly, who is a photographer, took some pictures of me back in June (really, was it that long ago?) She printed all these on the link off for me and I am honestly still in awe of the sweet comments from her blog. I have never thought of myself as “stunning” as she likes to tell me people are posting on her blog, so it has taken me a while to post them here. It is one thing on her blog – I mean she did take the pictures but on my blog, I don’t know…it is always scary posting pictures of yourself…you know? Then she told me today that she entered a black and white contact here and it was picked from thousands of other pictures – which completely blows me away. Anyway, I must admit as one, who really doesn’t like to be the center of attention, it feels awesome for her to send me all the amazing comments from this picture too.
Trials: YIPPIE, I got word today that I was accepted for the parp trial!! This is great news. Eric has been asking my Dr about parps from the get go. He told me he really feels this is the right path for me. I will go with him on that thought being as he is the one out of us two who does the research! This does mean though, that I will be getting infusions on Fridays AND Mondays which is a huge pain in my a*s, but hey if it works, I will get infusions two days a week forever if I need to. I will be on a two week on/one week off schedule now. I am off this Friday and will start all the parp stuff next Friday.
Ian’s 4th birthday is tomorrow. A big shift has happened in me these last few months. Before all this cancer nonsense, I was dreading Ian growing up. I wanted him to stay my baby forever. Now I am so exacted about his birthday tomorrow and all others to come. I now just want to see him grow up – plan and simple. I also realize that life goes on – no matter how much we try to stop it or how much we wish things were different, life goes on…day by day. I have had a rough couple of months not feeling good, wondering if I was possibly driving myself crazy (that is still up for debate), feeling like I am continually going through the grieving cycle, but looking at him reminds me I am here today to be his mommy. So here is to my big boy’s 4th birthday and many, many more to come.
Pictures: My neighbor Holly, who is a photographer, took some pictures of me back in June (really, was it that long ago?) She printed all these on the link off for me and I am honestly still in awe of the sweet comments from her blog. I have never thought of myself as “stunning” as she likes to tell me people are posting on her blog, so it has taken me a while to post them here. It is one thing on her blog – I mean she did take the pictures but on my blog, I don’t know…it is always scary posting pictures of yourself…you know? Then she told me today that she entered a black and white contact here and it was picked from thousands of other pictures – which completely blows me away. Anyway, I must admit as one, who really doesn’t like to be the center of attention, it feels awesome for her to send me all the amazing comments from this picture too.
Trials: YIPPIE, I got word today that I was accepted for the parp trial!! This is great news. Eric has been asking my Dr about parps from the get go. He told me he really feels this is the right path for me. I will go with him on that thought being as he is the one out of us two who does the research! This does mean though, that I will be getting infusions on Fridays AND Mondays which is a huge pain in my a*s, but hey if it works, I will get infusions two days a week forever if I need to. I will be on a two week on/one week off schedule now. I am off this Friday and will start all the parp stuff next Friday.
Ian’s 4th birthday is tomorrow. A big shift has happened in me these last few months. Before all this cancer nonsense, I was dreading Ian growing up. I wanted him to stay my baby forever. Now I am so exacted about his birthday tomorrow and all others to come. I now just want to see him grow up – plan and simple. I also realize that life goes on – no matter how much we try to stop it or how much we wish things were different, life goes on…day by day. I have had a rough couple of months not feeling good, wondering if I was possibly driving myself crazy (that is still up for debate), feeling like I am continually going through the grieving cycle, but looking at him reminds me I am here today to be his mommy. So here is to my big boy’s 4th birthday and many, many more to come.
Saturday, August 6, 2011
Chemo Chronicle 3.2
Still no word on the trial…the research nurse is 99% confident I will get in, but says she won’t be happy until we have it in writing – I am going with that also.
Treatment was easier today. It lasted a little over 3 hours and instead of watching trashy TV I decided to meditate and envision my cancer cells being blown up by the chemo – hey, whatever I can do to help. My white blood count is low, so I have to get a nuelasta shot on Monday.
Last week’s treatment treated me pretty good. I was really tired, but I never got too nauseated. I just felt morning sick a few days but nothing that made it impossible to go with the day. I did have trouble eating which s*cks. Nothing but crap sounds good, so on one hand this is affecting me a lot like A/C did (the first chemo I ever did).
I think all this is catching up with Ian which seriously breaks my heart. He told Gina last week that he didn’t like going to her house because it always meant I had to go to the doctor. She is so great with him and told him that no matter if he was at her house or home with BB, I would still have to go to the doctors. Both Eric and I have made a conscience effort to talk as openly as possible with him about it – which is so hard. I want to shelter him from all this, but that is not looking like it is possible. I made him an appointment for Wonders & Worries in 2 Tuesdays. We hadn’t done this before because well, we didn’t think this was going to go on for this long…now, well, we don’t know when it will actually end.
Another thing that is on my mind is this whole going vegan bit. Marci told me to pray about it – I did. I prayed for an answer and today my friend sent me an email with info for this coming movie: http://forksoverknives.com
I am going to order it on August 9th. I am thinking this is an answer to my prayer but in all honesty I am not excited in the least bit about going vegan which I don’t know if that is going to make it easier or harder – I guess I wasn’t excited about giving up sugar or wine either. But on days when I don’t feel like eating (Sundays and Mondays) just the thought of rice and tofu make me want to vomit. I also don’t like to cook – never have. I would assume eating vegan means me cooking all the time and honestly I don’t have the energy to cook. I want to do everything I possibly can to help get this cancer out of my body – does that mean going vegan? Would doing it some days help – I just don’t know.
It seems that people did like the specific prayer requests from last week, so I am going to continue those. Please pray that I get into the trail and that my energy returns for Ian’s birthday party next Saturday. We are keeping it small this year because in the past he was overwhelmed with the amount of people who were there. Eric read somewhere a kid should have the number of guests at the party as the age they are turning – we aren’t doing only 4 guests but not many more. He got to make his guest list of his friends and I just said ok, it is your party you invite your friends! I really hope this party lives up to his expectations – he has been talking about it since March.
Treatment was easier today. It lasted a little over 3 hours and instead of watching trashy TV I decided to meditate and envision my cancer cells being blown up by the chemo – hey, whatever I can do to help. My white blood count is low, so I have to get a nuelasta shot on Monday.
Last week’s treatment treated me pretty good. I was really tired, but I never got too nauseated. I just felt morning sick a few days but nothing that made it impossible to go with the day. I did have trouble eating which s*cks. Nothing but crap sounds good, so on one hand this is affecting me a lot like A/C did (the first chemo I ever did).
I think all this is catching up with Ian which seriously breaks my heart. He told Gina last week that he didn’t like going to her house because it always meant I had to go to the doctor. She is so great with him and told him that no matter if he was at her house or home with BB, I would still have to go to the doctors. Both Eric and I have made a conscience effort to talk as openly as possible with him about it – which is so hard. I want to shelter him from all this, but that is not looking like it is possible. I made him an appointment for Wonders & Worries in 2 Tuesdays. We hadn’t done this before because well, we didn’t think this was going to go on for this long…now, well, we don’t know when it will actually end.
Another thing that is on my mind is this whole going vegan bit. Marci told me to pray about it – I did. I prayed for an answer and today my friend sent me an email with info for this coming movie: http://forksoverknives.com
I am going to order it on August 9th. I am thinking this is an answer to my prayer but in all honesty I am not excited in the least bit about going vegan which I don’t know if that is going to make it easier or harder – I guess I wasn’t excited about giving up sugar or wine either. But on days when I don’t feel like eating (Sundays and Mondays) just the thought of rice and tofu make me want to vomit. I also don’t like to cook – never have. I would assume eating vegan means me cooking all the time and honestly I don’t have the energy to cook. I want to do everything I possibly can to help get this cancer out of my body – does that mean going vegan? Would doing it some days help – I just don’t know.
It seems that people did like the specific prayer requests from last week, so I am going to continue those. Please pray that I get into the trail and that my energy returns for Ian’s birthday party next Saturday. We are keeping it small this year because in the past he was overwhelmed with the amount of people who were there. Eric read somewhere a kid should have the number of guests at the party as the age they are turning – we aren’t doing only 4 guests but not many more. He got to make his guest list of his friends and I just said ok, it is your party you invite your friends! I really hope this party lives up to his expectations – he has been talking about it since March.
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