I haven't written because it sucks and I am horrible most days. I have to hold it all in and when I write it comes out too much and it is hard to stuff it all down again. I am sinking down and now feel like I see cracks in my kids too where they are not who they used to be and yet I just can't talk to them or help them cope when I can't myself.
Every third day after chemo I swear I will not to the next round of chemo. It is just so hard being sick and so much of the time. I hate being sick and fell like I will never be well again. I am half way through with this chemo if my scans come back stable and no growth.
On the medical side my cane really helps me not feel like I am going to fall all the time. I have a messed up port that gives nothing but trouble for every chemo. I have ear rocks aka benign paroxysmal positional vertigo
http://www.mayoclinic.org/diseases-conditions/vertigo/basics/definition/con-20028216
So basically I get dizzy real easy and mostly when I turn in bed or move my head in certain positions. Supposed to see a special dr about after the holidays.
Tuesday, December 16, 2014
Thursday, September 25, 2014
What to know about me
I think I may have written some of this before but I choose not to go back and read this blog because it is so emotional and grammatically hard to read since it is often written during crying spells, pain, and at odd hours of the night. So since I had major surgery and I am doing chemo again I think it is time for a refresher.
Just because I look "good" --fixed my hair, have makeup on, and not in pajama's, doesn't mean I am feeling good. Just because there is the class that says "Look Better, Feel Better" (this class is promoted by the makeup industry to those going thru cancer). I fix my hair and get dressed (currently only when leaving the house, I know many moms who are like that too!) because I don't want to look horrible even though I feel horrible. It takes a lot of energy out of me to do this and often involves planning days ahead to go out--one day get clothes out, another day bath, another day fix hair, and on the day I go out doing nothing but the outing to have energy for it.
Just because I haven't lost all my hair doesn't mean the chemo I am taking is not that bad or hard on me. Chemo is not just one chemo, their our MANY different types of chemo for each different kind of cancer. I, thankfully on this occasion, was born with very thick hair, so my chemo has me loosing about half of my hair. Now, while I know that it is better than having no hair, I still loose my hair all the time and quite annoying, clogging sinks, tubs, my bed, always picking off hairs.
Again, this goes back to different chemos. Just because you know someone who worked through chemo and ran a 5K doesn't mean I can or that I am lazy. Even the same chemo effects people differently. Plus, the surgery and the neuropathy induced from chemo makes it painful to walk, and I am always tired (one reason why I will be getting iron infusion for now on). And other issues I don't want to talk about.
For me, if you have an alternative, please feel free to post it, but if you want me to try it, please consider that I am unable to try all the different cures out there because of cost, unless you are going to buy it. I don't want to tell my kids that they can't do things and we need to eat bread and water (we already live off cheap meals) so I can try and sort through all the different cancer cures out there in hopes of finding one. I have researched many and it is overwhelming the different ones and then making sure you are getting the right supplements because not all supplements are created equally. It was also hard to find people with my specific cancer and the spread I have with a positive story. Example, the closest I found was a stage 1 (earliest stage) that *had surgery* and then did this alternative cure. Well, stage 1 doesn't get chemo or radiation for my cancer so the surgery was the treatment. I do believe there are alternative treatments, I just don't have the full ability to try them all until health insurance covers them. I think of Steve Jobs who had all the resources and couldn't find a treatment.
Even though this blog has been sort of sharing what I have gone through, it is no where near what I have gone through. I haven't post about 70% of the crap. So know it is worse than what you read. And this goes to anyone I talk to in person.
I felt really stupid as soon as I was dx with cancer. I kept thinking of a person I knew who had cancer. I wish I could have been different to this person but I couldn't then. I had no clue about it until I had it. And most likely you will not have a clue either even as I try and explain some of it. That is the *peace* you have when you do not have cancer. I wish I had the peace of not knowing. But having been on both sides it does make me understand and try to understand the non cancer person and where they are coming from.
For me, it is not the "stupid" comments that hurt so much as the not saying anything and pretending cancer is not there or that cancer would go away. I can not pretend it away or ignore it.
I wish I could be that gun ho cancer person that is often the poster person for cancer, I wonder if it is a myth of sorts or at least an omission of the whole truth and glossed over the bad parts.
And some more things to know that resonate with me taken from a list I read online:
“It’s okay to say or do the ‘wrong’ thing.” I did and do!
“I need to know you’re here for me, but if you can’t be, you can still show you care.”
“I am terrified and need to know you’ll forgive me if I snap at you or bite your head off.”
“I need you to listen to me and let me cry.”
“I need to feel hope, but telling me to think positively can make me feel worse.”
“I want you to respect my judgment and treatment decisions.”
“I want you to give me an opening to talk about cancer and then take my lead.”
“If you really want to help me, be specific about your offer, or just help without asking."
“I love being held in your thoughts or prayers.”
“Hearing platitudes or what’s good about cancer can minimize my feelings.”
“I don’t know why I got cancer, and hearing your theory may add grave insult to injury.”
“Don’t take it personally if I don’t return your call or want to see you.”
“I am more grateful than I can say for your care, compassion, and support.”
“I don’t want to hear that I’ll be just fine.”
“I am unique, so please don’t compare me.” Said one survivor, “Don’t tell me how wonderful Lance Armstrong is, not letting cancer get him down’ . . . you don’t read about when he was down or puking or tired, and when you compare me to him or any other famous cancer survivor, I feel like I am less-than because chemo is kicking my butt.”
“The simplest gesture, like a text message every day or two, can mean the world to me.”
Visit—without expecting to be entertained.
Deliver meals (restaurant or homemade) or give food gift certificates.
Have their house cleaned, or clean it yourself.
Help with their children.
Reprinted with permission from Help Me Live, Revised and Expanded: 20 Things People with Cancer Want You to Know. Copyright © 2011 Lori Hope, Celestial Arts, an imprint of Ten Speed Press and the Crown Publishing Group, Berkeley, CA.
Just because I look "good" --fixed my hair, have makeup on, and not in pajama's, doesn't mean I am feeling good. Just because there is the class that says "Look Better, Feel Better" (this class is promoted by the makeup industry to those going thru cancer). I fix my hair and get dressed (currently only when leaving the house, I know many moms who are like that too!) because I don't want to look horrible even though I feel horrible. It takes a lot of energy out of me to do this and often involves planning days ahead to go out--one day get clothes out, another day bath, another day fix hair, and on the day I go out doing nothing but the outing to have energy for it.
Just because I haven't lost all my hair doesn't mean the chemo I am taking is not that bad or hard on me. Chemo is not just one chemo, their our MANY different types of chemo for each different kind of cancer. I, thankfully on this occasion, was born with very thick hair, so my chemo has me loosing about half of my hair. Now, while I know that it is better than having no hair, I still loose my hair all the time and quite annoying, clogging sinks, tubs, my bed, always picking off hairs.
Again, this goes back to different chemos. Just because you know someone who worked through chemo and ran a 5K doesn't mean I can or that I am lazy. Even the same chemo effects people differently. Plus, the surgery and the neuropathy induced from chemo makes it painful to walk, and I am always tired (one reason why I will be getting iron infusion for now on). And other issues I don't want to talk about.
For me, if you have an alternative, please feel free to post it, but if you want me to try it, please consider that I am unable to try all the different cures out there because of cost, unless you are going to buy it. I don't want to tell my kids that they can't do things and we need to eat bread and water (we already live off cheap meals) so I can try and sort through all the different cancer cures out there in hopes of finding one. I have researched many and it is overwhelming the different ones and then making sure you are getting the right supplements because not all supplements are created equally. It was also hard to find people with my specific cancer and the spread I have with a positive story. Example, the closest I found was a stage 1 (earliest stage) that *had surgery* and then did this alternative cure. Well, stage 1 doesn't get chemo or radiation for my cancer so the surgery was the treatment. I do believe there are alternative treatments, I just don't have the full ability to try them all until health insurance covers them. I think of Steve Jobs who had all the resources and couldn't find a treatment.
Even though this blog has been sort of sharing what I have gone through, it is no where near what I have gone through. I haven't post about 70% of the crap. So know it is worse than what you read. And this goes to anyone I talk to in person.
I felt really stupid as soon as I was dx with cancer. I kept thinking of a person I knew who had cancer. I wish I could have been different to this person but I couldn't then. I had no clue about it until I had it. And most likely you will not have a clue either even as I try and explain some of it. That is the *peace* you have when you do not have cancer. I wish I had the peace of not knowing. But having been on both sides it does make me understand and try to understand the non cancer person and where they are coming from.
For me, it is not the "stupid" comments that hurt so much as the not saying anything and pretending cancer is not there or that cancer would go away. I can not pretend it away or ignore it.
I wish I could be that gun ho cancer person that is often the poster person for cancer, I wonder if it is a myth of sorts or at least an omission of the whole truth and glossed over the bad parts.
And some more things to know that resonate with me taken from a list I read online:
“It’s okay to say or do the ‘wrong’ thing.” I did and do!
“I need to know you’re here for me, but if you can’t be, you can still show you care.”
“I am terrified and need to know you’ll forgive me if I snap at you or bite your head off.”
“I need you to listen to me and let me cry.”
“I need to feel hope, but telling me to think positively can make me feel worse.”
“I want you to respect my judgment and treatment decisions.”
“I want you to give me an opening to talk about cancer and then take my lead.”
“If you really want to help me, be specific about your offer, or just help without asking."
“I love being held in your thoughts or prayers.”
“Hearing platitudes or what’s good about cancer can minimize my feelings.”
“I don’t know why I got cancer, and hearing your theory may add grave insult to injury.”
“Don’t take it personally if I don’t return your call or want to see you.”
“I am more grateful than I can say for your care, compassion, and support.”
“I don’t want to hear that I’ll be just fine.”
“I am unique, so please don’t compare me.” Said one survivor, “Don’t tell me how wonderful Lance Armstrong is, not letting cancer get him down’ . . . you don’t read about when he was down or puking or tired, and when you compare me to him or any other famous cancer survivor, I feel like I am less-than because chemo is kicking my butt.”
“The simplest gesture, like a text message every day or two, can mean the world to me.”
Visit—without expecting to be entertained.
Deliver meals (restaurant or homemade) or give food gift certificates.
Have their house cleaned, or clean it yourself.
Help with their children.
Reprinted with permission from Help Me Live, Revised and Expanded: 20 Things People with Cancer Want You to Know. Copyright © 2011 Lori Hope, Celestial Arts, an imprint of Ten Speed Press and the Crown Publishing Group, Berkeley, CA.
Sunday, September 7, 2014
I didn't want to write
because it is too hard emotionally. But I want to write something about surgery before I start chemo.
Surgery was awful! Duh! My first post surgery memory waking up with a NG tube. That is the WORST thing EVER!!! I pray I never need another one. I cursed a nurse out over it. One nurse calmed me gently and kindly another nurse was mean and rude trying to calm me. So I think know which nurse I cursed out. After that was taken out I finally got sleep. I woke up the next day and the drs came to visit. They ask how I am doing and I say "Wow, surgery wasn't that bad and I am doing better than I thought I would be doing--emotionally and pain wise." Now here comes the "duh! you are so stupid" moment.----When finally after a week I start to think and realize it is the DRUGS that made me say that. The drugs now get lowered and lower it hits like a ton of bricks, this sucks and my brain can now THINK and SEE and FEEL what has happened to me. Oh the things I would have written if I had wrote every few days since surgery. I hate to even think about it, that is why I didn't write. I have been so low and I am trying with all I have to cope. My body and mind is so destroyed and broken and hurt, and hurting. My brain can hardly cope and process it, I cling to stupid games and busyness. Watched ALL six seasons of Reba the tv show. And now homeschooling diverts my attention, which I do from my bed. Laying down is still the most comfort I can have. Pain patches (3 at a time!) and pain pill is what I take to help, but still walking and moving causes pain and tiredness. I use a cane ( I refuse to use the walker the dr rx for me) that helps make me more steady. Being tired and having pain for so many weeks since surgery was in JUNE gets me so down. I will never feel health again it seems, especially since chemo is starting now. My hair is also falling out for the last few weeks and I haven't even started chemo yet.
Chemo starts Tuesday and will last 6-7 mths. I will get the chemo pump again that I will have attached to me for 3 days. I had surgery to put the chemo port back in again. I had a ct scan Thursday and I am very anxious to get the results. My surgery in June got clear margins (the best result you could get).
I had someone say "Oh that won't be any big deal. That will be easy, no problem." when commenting on something that I should be able to do. I didn't know what to say, I just held back the tears, and wanted to say "Yeah, easy for the normal person, but super hard for me and it will likely cause me to freak out." I didn't say that to them because would they even understand how a simple task for them could cause such pain and stress for me?
I so don't feel like writing. It just sucks to think. It makes me cry.
PS If anyone wants me to do ALL the MANY, MANY, MANY the alternative cures for cancer I will be more than happy to take your donations for it since my insurance doesn't cover it. And please tell me which of the many, many, many alternative cures for cancer will kill my cancer.
Surgery was awful! Duh! My first post surgery memory waking up with a NG tube. That is the WORST thing EVER!!! I pray I never need another one. I cursed a nurse out over it. One nurse calmed me gently and kindly another nurse was mean and rude trying to calm me. So I think know which nurse I cursed out. After that was taken out I finally got sleep. I woke up the next day and the drs came to visit. They ask how I am doing and I say "Wow, surgery wasn't that bad and I am doing better than I thought I would be doing--emotionally and pain wise." Now here comes the "duh! you are so stupid" moment.----When finally after a week I start to think and realize it is the DRUGS that made me say that. The drugs now get lowered and lower it hits like a ton of bricks, this sucks and my brain can now THINK and SEE and FEEL what has happened to me. Oh the things I would have written if I had wrote every few days since surgery. I hate to even think about it, that is why I didn't write. I have been so low and I am trying with all I have to cope. My body and mind is so destroyed and broken and hurt, and hurting. My brain can hardly cope and process it, I cling to stupid games and busyness. Watched ALL six seasons of Reba the tv show. And now homeschooling diverts my attention, which I do from my bed. Laying down is still the most comfort I can have. Pain patches (3 at a time!) and pain pill is what I take to help, but still walking and moving causes pain and tiredness. I use a cane ( I refuse to use the walker the dr rx for me) that helps make me more steady. Being tired and having pain for so many weeks since surgery was in JUNE gets me so down. I will never feel health again it seems, especially since chemo is starting now. My hair is also falling out for the last few weeks and I haven't even started chemo yet.
Chemo starts Tuesday and will last 6-7 mths. I will get the chemo pump again that I will have attached to me for 3 days. I had surgery to put the chemo port back in again. I had a ct scan Thursday and I am very anxious to get the results. My surgery in June got clear margins (the best result you could get).
I had someone say "Oh that won't be any big deal. That will be easy, no problem." when commenting on something that I should be able to do. I didn't know what to say, I just held back the tears, and wanted to say "Yeah, easy for the normal person, but super hard for me and it will likely cause me to freak out." I didn't say that to them because would they even understand how a simple task for them could cause such pain and stress for me?
I so don't feel like writing. It just sucks to think. It makes me cry.
PS If anyone wants me to do ALL the MANY, MANY, MANY the alternative cures for cancer I will be more than happy to take your donations for it since my insurance doesn't cover it. And please tell me which of the many, many, many alternative cures for cancer will kill my cancer.
Tuesday, June 10, 2014
Last day
Last day of me. The appts have been very hard. I am exhausted in all ways. I am scared. I miss my kids. I want to live. I am overwhelmed and worried about my future. Too drained to write anymore.
Monday, June 9, 2014
Reality is worse than my imagination
Reality is worse than my imagination.
Yep, I am falling off the cliff.
Saturday, June 7, 2014
I can see the light at the end of the tunnel...
....and it is a train. LOL That is so true for me! I can't see a good end in sight, only a train heading straight for me and ready to hit and run me down.
Blah, blah, blah, yada, yada, yada. Just the same old things going on with me and same freak outs more often.
On Wednesday I took my youngest son (age 4) to the ER for what turned out to be an appendicitis! Just another thing to deal with and be strong right before I am about to leave for my hellish operation. It took another big junk of strength and adrenaline out of me to hold back the tears and freak outs and be there for my son which I did do but I am yet again weaker and still have to keep going.
I have tried to get ready for being gone for so long, so long away from my kids. I cleaned the house and paid the bills up to June 27. Took pictures of all of them. I so hope I don't die, I have felt like I would if I did surgery. I hope I am wrong. I am not prepared to die. I never got to write my "books" to my kids. I just want to be here with them and not write all these things I want to tell them in a book.
I still can't imagine myself walking out my door and going to Mayo. How will I leave my kids knowing I might not come back. and what does come back will be a me that is worse than I am now. I will be more tired than I am now, in more pain than I have now, a worse body than I have now, I worse mind than I have now, and less strength than I have now. And no guarantee (or even good odds!) that the cancer is gone and not somewhere else in my body and won't come back.
Blah, blah, blah, yada, yada, yada. Just the same old things going on with me and same freak outs more often.
On Wednesday I took my youngest son (age 4) to the ER for what turned out to be an appendicitis! Just another thing to deal with and be strong right before I am about to leave for my hellish operation. It took another big junk of strength and adrenaline out of me to hold back the tears and freak outs and be there for my son which I did do but I am yet again weaker and still have to keep going.
I have tried to get ready for being gone for so long, so long away from my kids. I cleaned the house and paid the bills up to June 27. Took pictures of all of them. I so hope I don't die, I have felt like I would if I did surgery. I hope I am wrong. I am not prepared to die. I never got to write my "books" to my kids. I just want to be here with them and not write all these things I want to tell them in a book.
I still can't imagine myself walking out my door and going to Mayo. How will I leave my kids knowing I might not come back. and what does come back will be a me that is worse than I am now. I will be more tired than I am now, in more pain than I have now, a worse body than I have now, I worse mind than I have now, and less strength than I have now. And no guarantee (or even good odds!) that the cancer is gone and not somewhere else in my body and won't come back.
Saturday, May 17, 2014
4 Years Ago
Four years ago I was fine, I had no clue I had cancer. I had no idea what
it meant to have cancer or what hell it really was and how messed up it made a
life and for those around the person with cancer. I still can't believe I am a person with cancer! I sometimes feel like it must be some horrible mistake.
I couldn't believe it has been more than a month since I last wrote on here. I think it is good for those who read it that I didn't post. My mind has been horrible. I am at times barely hanging on. Many freak outs a day. The worst is when driving my son 6 days a week, when I am in the car driving for 2 hours. All you can do during that time is think. I try to sing stupid silly songs to distract me, but it doesn't help that much anymore. Some of the things that keep replaying in my mind is :
I am going to be in more pain that I am now.
I am going to be more tired that I am now.
I am going to have more bathroom issues than I do now.
I will have to deal with so so much more and learn so may new things that I don't want to.
I will hate my body more that I hate it now.
I will be a worse mom than I am now.
I am afraid I might die in surgery or soon after. I am not prepared to die. I don't want to prepare to die!
In medical news: After the exam surgery they determined radiation wouldn't be helpful. So the plan now is surgery, the exact same surgery from the first time around. Then 6 months of chemo. I back up to Mayo June 8 and will be there for who knows how long. Chemo wouldn't start for 6-8 wks after that, if everything goes perfectly.
Again, I am amazed how the medical community treats patients at times. Please tell me what kind of breastfeeding counselor I would be if I told moms any of these things:
I am going to give you tough love to help move you along in breastfeeding your baby.
I am going to take before and after pictures of your breasts. (notice, I didn't ask you if I could take them)
No, you won't need any in person help for breastfeeding, after you leave the hospital, even though you have never breastfed before and your in pain and even though you still don't know how to do it correctly, you'll just get the hang of it.
What? You you think you might have postpartum depression?? Well, you should be grateful you have a healthy baby and you are alive. Try to think positive and not be so sad, upset about things.
This is the kinds of things said to me in regards to cancer.
We are going to give you tough love to help move you along after surgery.
We will take before and after pictures. (wasn't asked, but told)
No, you don't need a visiting nurse when you go home. Yes, you will have drains for a couple of weeks, an open wound, and you will learn how to care for an ostomy after a short visit from the special nurse on how to do it.
You're depressed now? You think you will be more depressed after surgery? Well, you will be alive and we are taking out the cancer so you should think positive and cope better and really try not to be so upset.
Being a first time mom is a life changing event. My surgery is a life changing event. But I see no understanding of that. Having a baby is a joyful thing even though it can be tough, overwhelming and for some moms they get postpartum depression. And yet I have cancer which is not a joyful thing and the expectations is so different.
Remember, there is a disclaimer at the top of this blog warning that this will not be nice reading and I am not even telling everything or the nitty gritty details.
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