since I posted here. I did post on facebook how my last cancer blood test and ct scan was good. I was a horrible bad mood right before the ct scan. They call it scanxiety. The thought and knowing I have to drink this horrible crap that makes me throw up and feel sick for 2days makes me like that. And then the waiting for the results wanting to know but not wanting to know.
The dr asks me how I am doing. I say, "I guess that will depend on what you say about the test results." he says, "They are fine except white blood cell and iron down but normal after having chemo." and then so quickly only enough time given to me to let out a sigh of relief that he turns the talk to surgery. Have I thought about doing it anymore? I say, "Of course, EVERY SINGLE DAY I think about surgery and how I would not have been able to do it. EVERY DAY something happens that shows me that." I am so trying to be happy and I am about the good test results but it is so hard when the drs are not so happy about it, like it doesn't matter that they came back good. They can't even relish in the fact that the tests come back good.
I hate that I can hardly remember the "before" anymore. It is hard to glimpse for even a moment the "before". What I hate even more is how I feel emotionally worse now the longer I am into this. I thought it would be the opposite. The bad sadness I felt in the beginning would get less but it hasn't. I think what has happened is in the beginning I was running on adrenaline and chemo and now I have crashed. The chemo has left my mind to think since I am not always so sick as a dog and the adrenaline has been used up since isn't the worst supposed to be over since I am not doing chemo and radiation now? Now I can think and farther away from treatment I get I feel like the closer I get to it coming back and starting all over again. My blog title says it clearly. I do really feel like cancer caught me and now it won't let go of me and I can't break free from it.
My hubby is still in La La Land. It is amazing all the things we have NOT talked about since me being dx. All the things I need to talk to him about, all the things I need to say and have him say to me. I forced him to go to the last dr appt. He did not say one word during the appt. It was just like when I go to the dr appts by myself.
I am still having a very hard time being around friends because I just can't do that without melting down. I hope you all can forgive me and understand.
The good: My oldest son has been very helpful to me, he has watched the baby so many days when I have been so so tired and needed sleep and helps with so many chores. My Mr. Clean and Punpkin sons have been just so happy and I love it and their smiles. My Hercules son just amazes me with what he can do and learn and how tough he is but saddens me with how I can see he knows too much about me and cancer. My daughter is just a miracle and a little mommy to the baby. My baby is not acting so much like a baby anymore but more like a toddler exploring everything and not a day goes by that I don't think about him nursing. As of now I do really think I have enough donated breastmilk to get him to his birthday when he turns 2yrs old. It is an amazing act of kindness that made that possible.
I still feel the prayers of other and that is what truly keeps me going and I hope they never end.
Saturday, April 30, 2011
Thursday, April 14, 2011
Downer day
You just can't go by looks or time. I hate cancer! When will they find a cure??????? I just met a 29 yr old woman one week ago. She had just been dx 2 weeks with stage 4 breast cancer. She looked GREAT, YOUNG. She was JUST dx. She was fine how could she have cancer she seemed to think. She sat on the sofa wide eyed and shocked but ready for the fight ahead and like it would be all ok. I believed her, she was handling it all better than I was at the same dx point. I thought what a long road ahead of her. Then find out she died. It rocked me. I hate cancer, how can it do this??? None of the people I meet, the stories I read make any sense. It makes my head spin.
I have to write all I want to say to my kids. I have to write everything I want to teach them. Because no matter how good you look and the time the drs say they give you don't matter and something can just happen. Having cancer makes me feel so completely unsafe. It feels like a ticking time bomb except you don't see the numbers ticking down but you do know it is less numbers than the average person and it could go off at any time.
I met another person in real life with rectal cancer. She was older woman than me. She had been dx stage 3 like me, did the yada yada yada like you are supposed to do, they told her she had no cancer and then 1 yr since her dx it is now stage 4. Drs won't tell me I have no cancer despite all the tests coming back clean since I didn't do surgery like they wanted me to do. I wonder if it is harder to have them say no cancer and then just in a short time have the cancer come back. For me it would be. For me hearing it is back seems harder than the first dx of cancer. I don't think of myself as not having cancer even with the clean test results 1) because the drs don't think of me as no cancer 2)it seems like cancer just hides like a game of hide n seek just waiting for you to find it, it never really goes away in many cases it seems. So I consider mine hiding and I and the drs just can't see it right now. I hope it is longer than a year from my date of dx before I see it again. It is just one month until the day I was dx.
This whole post written through tears.
I have to write all I want to say to my kids. I have to write everything I want to teach them. Because no matter how good you look and the time the drs say they give you don't matter and something can just happen. Having cancer makes me feel so completely unsafe. It feels like a ticking time bomb except you don't see the numbers ticking down but you do know it is less numbers than the average person and it could go off at any time.
I met another person in real life with rectal cancer. She was older woman than me. She had been dx stage 3 like me, did the yada yada yada like you are supposed to do, they told her she had no cancer and then 1 yr since her dx it is now stage 4. Drs won't tell me I have no cancer despite all the tests coming back clean since I didn't do surgery like they wanted me to do. I wonder if it is harder to have them say no cancer and then just in a short time have the cancer come back. For me it would be. For me hearing it is back seems harder than the first dx of cancer. I don't think of myself as not having cancer even with the clean test results 1) because the drs don't think of me as no cancer 2)it seems like cancer just hides like a game of hide n seek just waiting for you to find it, it never really goes away in many cases it seems. So I consider mine hiding and I and the drs just can't see it right now. I hope it is longer than a year from my date of dx before I see it again. It is just one month until the day I was dx.
This whole post written through tears.
Monday, March 21, 2011
Neuropathy makes you feel crazy
This post comes because I left my house and went out into the world for a long day and was reminded again of how things are not normal.
This sums up the neuropathy that I have from the chemo that I got. It is funny that the dr didn't tell me I would have this after the chemo was done.
http://cancerissofunny.blogspot.com/2010/04/what-does-neuropathy-feel-like.html
Since I don't go anywhere I can sort live with it since now I am so used to being like this. At home I only walk very little and then can go sit down anytime I like. It is when I go out it hits me, Oh, yeah, I can't walk like everyone else and like I used to. The wheel chair is a blessing and a pain. Great since I can be out without a time limit but bad since I get these looks (I think because I am young and remember I LOOK SO GOOD!) but then I can't go out by myself since I can't push the kind of wheel chair I have really well by myself for long distances (I have the neuropathy in my fingers too but not as bad as my legs/feet).
My neuropathy makes me feel like my shoes are too tight, it makes me feel like things that are not there, it makes me hurt, it makes me feel nothing at all, it makes touching hurt and weird sensations, it makes me question and not trust what I feel or don't feel. It mostly makes me feel crazy. I hate walking slow, I hate walking like a duck and an old person, I hate looking normal and walking weird, I hate the looks, I hate that I don't know when this will and if this will go away. I pray this is what I will have to deal with, I will happily complain about having this. Can this be the only thing I have to deal with, pretty please.
This is just one of the hidden side effects of cancer that people can't see. I have other hidden side effects but would rather not share since they are icky and I do try my best to keep them hidden but it is hard and such an interference with my daily life. People can see and know that after the chemo, after the radiation, after the surgery there is a whole bunch of never ending side effects physically and emotionally that keeps you.
Chemo and radiation and surgery, the gift that keeps on giving except it doesn't always keep the cancer away.
This sums up the neuropathy that I have from the chemo that I got. It is funny that the dr didn't tell me I would have this after the chemo was done.
http://cancerissofunny.blogspot.com/2010/04/what-does-neuropathy-feel-like.html
Since I don't go anywhere I can sort live with it since now I am so used to being like this. At home I only walk very little and then can go sit down anytime I like. It is when I go out it hits me, Oh, yeah, I can't walk like everyone else and like I used to. The wheel chair is a blessing and a pain. Great since I can be out without a time limit but bad since I get these looks (I think because I am young and remember I LOOK SO GOOD!) but then I can't go out by myself since I can't push the kind of wheel chair I have really well by myself for long distances (I have the neuropathy in my fingers too but not as bad as my legs/feet).
My neuropathy makes me feel like my shoes are too tight, it makes me feel like things that are not there, it makes me hurt, it makes me feel nothing at all, it makes touching hurt and weird sensations, it makes me question and not trust what I feel or don't feel. It mostly makes me feel crazy. I hate walking slow, I hate walking like a duck and an old person, I hate looking normal and walking weird, I hate the looks, I hate that I don't know when this will and if this will go away. I pray this is what I will have to deal with, I will happily complain about having this. Can this be the only thing I have to deal with, pretty please.
This is just one of the hidden side effects of cancer that people can't see. I have other hidden side effects but would rather not share since they are icky and I do try my best to keep them hidden but it is hard and such an interference with my daily life. People can see and know that after the chemo, after the radiation, after the surgery there is a whole bunch of never ending side effects physically and emotionally that keeps you.
Chemo and radiation and surgery, the gift that keeps on giving except it doesn't always keep the cancer away.
Friday, March 18, 2011
There's always something unexpected!
Can't things ever turn out how you think they will??
Nope!
Thought I was just going back to the gyn for a follow biopsy-- but it didn't end there! First, she was GREAT! I think she gets where I am coming from. After I told her about the chemo dr appt (thought she should know I wouldn't be getting a CT scan), she got me in RIGHT THEN to another chemo dr! Amazing! But of course it scared the heck out of me since I was not prepared for that at that moment. And I have been dreading trying to find another chemo dr. It is so draining to actually do it and even just the thought of going to another dr appt is really getting to me. Appts and drs are so draining and such a downer on me. I just want a break. But no break. (I have 4 dr appts for the month of April!)
Thankfully, I had my friend with me who is on the short list to sainthood for coming to a super early morning appt and then staying even longer for another unexpected appt all the while with a toddler in tow (who was perfect). Thank you Saint Natalie (and Anna)!
Even though the new chemo dr appt went ok it was very, very stressful for me. The good news is he would give me a ct scan and proper follow up. I also learned that I was discussed at the tumor/cancer board meeting by all the drs, so all the local drs now know what a pain in the *ss I am! LOL The difficult patient that won't just follow along with them. So good to know how much harder it would have been to find a chemo dr if it wasn't for my gyn dr taking it upon herself to get me to see one. Plus, they would know immediately that it was me (even though they don't use names) since who else would have a rare cancer at a young age. Turns out my new chemo dr actually questioned why I was having this "full surgery" and perhaps I could do half the surgery. Nope, they all jumped on him for that comment. Oh, no, you don't do that, she's a T4 tumor!
So here's the big curve ball thrown during the unexpected dr appt and the last thing I was thinking when I went to meet him. His idea is to call the GI drs and ask if they would do half of the surgery. I am thrown for a loop when he says this and thrown into panic mode, and I am still in panic mode whenever I think (write) about it. Just when I thought I had made a decision about surgery now it could be back on the table. I did ask the GI dr if he would do half of the surgery way back when and he told me no but of course it was ME asking, maybe another dr asking is different.
Well, now I am just in an unknown zone waiting for a biopsy result, waiting to hear what the GI dr said about half surgery, wondering what will I do and wondering how I could do it all. And basically feeling like my life is always falling apart and just wanting a break from this all for a little bit. No, a long bit. It stinks just as one of my kids is getting counseling over this stupid cancer thing and the counselor had just reported "I think he is doing ok and now with everything settling down too it will help him", yeah, right, now it could be possibly thrown into more chaos again. My family's world is a mess and stressful and never stopping. I need a break but you can't get a break--something always happens.
Nope!
Thought I was just going back to the gyn for a follow biopsy-- but it didn't end there! First, she was GREAT! I think she gets where I am coming from. After I told her about the chemo dr appt (thought she should know I wouldn't be getting a CT scan), she got me in RIGHT THEN to another chemo dr! Amazing! But of course it scared the heck out of me since I was not prepared for that at that moment. And I have been dreading trying to find another chemo dr. It is so draining to actually do it and even just the thought of going to another dr appt is really getting to me. Appts and drs are so draining and such a downer on me. I just want a break. But no break. (I have 4 dr appts for the month of April!)
Thankfully, I had my friend with me who is on the short list to sainthood for coming to a super early morning appt and then staying even longer for another unexpected appt all the while with a toddler in tow (who was perfect). Thank you Saint Natalie (and Anna)!
Even though the new chemo dr appt went ok it was very, very stressful for me. The good news is he would give me a ct scan and proper follow up. I also learned that I was discussed at the tumor/cancer board meeting by all the drs, so all the local drs now know what a pain in the *ss I am! LOL The difficult patient that won't just follow along with them. So good to know how much harder it would have been to find a chemo dr if it wasn't for my gyn dr taking it upon herself to get me to see one. Plus, they would know immediately that it was me (even though they don't use names) since who else would have a rare cancer at a young age. Turns out my new chemo dr actually questioned why I was having this "full surgery" and perhaps I could do half the surgery. Nope, they all jumped on him for that comment. Oh, no, you don't do that, she's a T4 tumor!
So here's the big curve ball thrown during the unexpected dr appt and the last thing I was thinking when I went to meet him. His idea is to call the GI drs and ask if they would do half of the surgery. I am thrown for a loop when he says this and thrown into panic mode, and I am still in panic mode whenever I think (write) about it. Just when I thought I had made a decision about surgery now it could be back on the table. I did ask the GI dr if he would do half of the surgery way back when and he told me no but of course it was ME asking, maybe another dr asking is different.
Well, now I am just in an unknown zone waiting for a biopsy result, waiting to hear what the GI dr said about half surgery, wondering what will I do and wondering how I could do it all. And basically feeling like my life is always falling apart and just wanting a break from this all for a little bit. No, a long bit. It stinks just as one of my kids is getting counseling over this stupid cancer thing and the counselor had just reported "I think he is doing ok and now with everything settling down too it will help him", yeah, right, now it could be possibly thrown into more chaos again. My family's world is a mess and stressful and never stopping. I need a break but you can't get a break--something always happens.
Thursday, March 10, 2011
So done
It's been a whole pregnancy since I have been dx with cancer and I feel like a pregnant woman who is at the end of the pregnancy and is ready for it to be over. I am so ready for cancer to be over. I sick of dealing with it. I am so sick of going to the doctors. That always brings me down and back to reality. Around everyone else all seems well, look at all the good test results. You all can be happy about it and rejoice. But I go to the doctor and there is no rejoicing just dread from them. Cancer will never be over unlike a pregnancy that will end with a happy little baby. Cancer never ends and when it does end, it really is the end.
So why the horrible downer of a blog post. Because of the horrible chemo dr appt. Just when I think all is well, I made my decision to not have surgery and planning all the follow up with the gi and gyn and now all that was left is to go to the chemo dr follow up appt and then he re hashes the no surgery decision. He veils it in "it's your choice" in his fakey voice and condescending tone. It's my choice to not have surgery but now I will not get the follow up that any other person would get since I didn't have surgery and that I can't promise him I would have surgery if it comes back. Well, so sorry if I can't promise you something about the future, I don't do that. I just don't get this dr. I would not treat a mom I was helping the way I have been treated. If a mom comes to me and I know she has low milk supply (and she knows it too). She says she wants to increase her supply and nurse her baby. I tell her a,b,c,x,y,z is what she needs to do but she only wants to do a,b,c. I don't belittle her. I tell her why it is important to do it all and the consequences of not doing it all etc but I let her decided what she wants to do and I support her best I can even if it is not what I would do or what I think she should do. It is her decision not mine. She will have to live with that decision. I don't. She knows what she is able to do. I don't tell her to promise me she'll do x,y,z if only doing a,b,c doesn't work. I trust this mom, I respect her, it is her life not mine.
I am sick of it all!
I am down about another mom who has this stupid, stupid cancer. She is starting chemo again. I remember saying give me more chemo in response to I would rather have chemo than surgery. Well, when I heard she was going to have to do more chemo a horrible dread feeling came over me. All those feelings and memories of the chemo came flooding back. I hate that she has to go through this. I hate knowing that might be me too. I just want to have cancer be done but it feels like it never will be. I will always have to deal with this.
I want to "move on" and get back to "normal life". Yeah, right, that can never happen. I am trying to not be down and trying to not think of cancer and what it means but it always comes back to my mind. The worst is the thought of not being here for my kids. I HATE that thought, that is the thing that gets me every time.
Ok, let's at least end this post on good things.
I really am so thankful and happy with how well (say a prayer) things are going with the cancer being in remission right now. So despite my rantings know this. It's just those dang drs who keep bringing me down so it is hard to stay happy.
I am also SO SO SO SO SO amazed that Trooper still has breastmilk from a super fab mom who has continued to provide milk for him. Trooper had been sick twice and I am sure he would have been in the hospital if it wasn't for the milk she has given to him. It kept him hydrated and provided calories when he wasn't eating anything. I just want to say it over and over and over again about what this has meant to me. It has been huge and brings me such peace and comfort.
So why the horrible downer of a blog post. Because of the horrible chemo dr appt. Just when I think all is well, I made my decision to not have surgery and planning all the follow up with the gi and gyn and now all that was left is to go to the chemo dr follow up appt and then he re hashes the no surgery decision. He veils it in "it's your choice" in his fakey voice and condescending tone. It's my choice to not have surgery but now I will not get the follow up that any other person would get since I didn't have surgery and that I can't promise him I would have surgery if it comes back. Well, so sorry if I can't promise you something about the future, I don't do that. I just don't get this dr. I would not treat a mom I was helping the way I have been treated. If a mom comes to me and I know she has low milk supply (and she knows it too). She says she wants to increase her supply and nurse her baby. I tell her a,b,c,x,y,z is what she needs to do but she only wants to do a,b,c. I don't belittle her. I tell her why it is important to do it all and the consequences of not doing it all etc but I let her decided what she wants to do and I support her best I can even if it is not what I would do or what I think she should do. It is her decision not mine. She will have to live with that decision. I don't. She knows what she is able to do. I don't tell her to promise me she'll do x,y,z if only doing a,b,c doesn't work. I trust this mom, I respect her, it is her life not mine.
I am sick of it all!
I am down about another mom who has this stupid, stupid cancer. She is starting chemo again. I remember saying give me more chemo in response to I would rather have chemo than surgery. Well, when I heard she was going to have to do more chemo a horrible dread feeling came over me. All those feelings and memories of the chemo came flooding back. I hate that she has to go through this. I hate knowing that might be me too. I just want to have cancer be done but it feels like it never will be. I will always have to deal with this.
I want to "move on" and get back to "normal life". Yeah, right, that can never happen. I am trying to not be down and trying to not think of cancer and what it means but it always comes back to my mind. The worst is the thought of not being here for my kids. I HATE that thought, that is the thing that gets me every time.
Ok, let's at least end this post on good things.
I really am so thankful and happy with how well (say a prayer) things are going with the cancer being in remission right now. So despite my rantings know this. It's just those dang drs who keep bringing me down so it is hard to stay happy.
I am also SO SO SO SO SO amazed that Trooper still has breastmilk from a super fab mom who has continued to provide milk for him. Trooper had been sick twice and I am sure he would have been in the hospital if it wasn't for the milk she has given to him. It kept him hydrated and provided calories when he wasn't eating anything. I just want to say it over and over and over again about what this has meant to me. It has been huge and brings me such peace and comfort.
Sunday, February 20, 2011
What a GREAT weekend!
I got the results back from the biopsy--- no cancer was found!!! It is amazing!!! I feel so grateful and blessed, a weight has been lifted off of me and I feel like I can see hope.
Because of the results (and the blood tests and the PET/CT scan and scope) I have decided not to do the surgery. As you know this is still going against what the drs recommend even though all the tests are good. I will have intense monitoring every 8 weeks to check for any reoccurrence. (I have gotten 3 drs--oncologist, gastroenterologist, gyn-- who agreed to follow me even if I don't do surgery.) I have a pelvic ultrasound scheduled for next Wed just to get another baseline so they can compare things as time goes by, just like they will do with the PET/CT scan pictures. And I will have cancer markers (a blood test) the beginning of March.
Also, thank you for your prayers and please continue to pray for me since this cancer has a very high reoccurrence rate and I pray I get time.
That was Friday and then on Saturday I went to my son's gymnastic meet where he did wonderful, of course! He got two 1st places and one second place and 3rd place all around. He also had another personal best score. This was a big and hard meet so this was a good showing.
Also, in an exciting college men's gymnastic meet Saturday night our Iowa Hawks won against a higher ranked team and beat them by a huge margin and posted many high scores. It was an awesome way to end a great weekend of great news!
I feel so great right now, like I can see light and sun. I hope and pray it lasts.
Please continue to pray. Thank you!
Because of the results (and the blood tests and the PET/CT scan and scope) I have decided not to do the surgery. As you know this is still going against what the drs recommend even though all the tests are good. I will have intense monitoring every 8 weeks to check for any reoccurrence. (I have gotten 3 drs--oncologist, gastroenterologist, gyn-- who agreed to follow me even if I don't do surgery.) I have a pelvic ultrasound scheduled for next Wed just to get another baseline so they can compare things as time goes by, just like they will do with the PET/CT scan pictures. And I will have cancer markers (a blood test) the beginning of March.
Also, thank you for your prayers and please continue to pray for me since this cancer has a very high reoccurrence rate and I pray I get time.
That was Friday and then on Saturday I went to my son's gymnastic meet where he did wonderful, of course! He got two 1st places and one second place and 3rd place all around. He also had another personal best score. This was a big and hard meet so this was a good showing.
Also, in an exciting college men's gymnastic meet Saturday night our Iowa Hawks won against a higher ranked team and beat them by a huge margin and posted many high scores. It was an awesome way to end a great weekend of great news!
I feel so great right now, like I can see light and sun. I hope and pray it lasts.
Please continue to pray. Thank you!
Tuesday, February 15, 2011
Trooper's Milk-breastmilk, since he is not a baby calf :-)
Here is a picture of all the breastmilk I was able to pump in a few weeks time before I had to wean my baby and do chemo treatment for the next 7 months. I remember when I was pumping it took forever to get 2 oz and yet I had a full supply and a baby who was solely on my milk. My baby could get the milk out but not the pump. I remember thinking, at first, wow look at all of this milk that I saved up but then quickly realized it would only last a couple weeks.
As you know I was so blessed to get milk donated for my baby by my friends. I have had one mom who was able to give me a constant supply of milk as she even still feeds her baby. I am SO SO SO THANKFUL for every drop of it! I had thought I would save my milk that I pumped for when I had run out of all the donated milk and my milk would be the last milk he got. I called it his "weaning milk". Well now beyond my wildest expectations I STILL have donated milk for Trooper! It is amazing and such comfort that he has gotten something I could not give him myself but others gave it to him knowing how much it meant to me and for him.
Trooper is now 17 months and still loving and drinking his milk (and of course eating solids). Some might think he is too old or why does he still need it. If I didn't have cancer I would still be nursing him. It is recommended for breastmilk be given by the World Health Organization for at least 2 years (with solids). The benefits of breastmilk don't go away at some certain age. Recently Trooper got sick for 6 days with a high fever, no other symptoms, wasn't sure what was wrong, he was just tired, cranky, didn't eat solid food. That whole time I was so glad we still had breastmilk for him during this. It is easy to digest and provided much needed calories and nutrition since he wasn't eating. Cows milk would have been hard on his system and water wouldn't provide anything except hydration. I felt so comforting to know he had the breastmilk and I am sure that it kept him out of the drs office or hospital because he was still able to drink breastmilk.
So now since I still have donated breastmilk and my milk is getting "older" I will start to use up my milk for Trooper and then go back and use the donated milk since it is "newer".
Subscribe to:
Posts (Atom)