Some quotes speak to me more than others. And some will hit me more at one time verse another time reading the same quote.
Last night I read this one, while I was looking through back to January 1st:
That one hit me last night, especially after not feeling great about myself Sunday night and Monday morning.
Wait... I need to back up. After I wrote yesterday morning about how bad I was feeling about myself, BIG thank you to the 2 people I heard from with messages here and on Facebook. I appreciate it SO much. Part of this journey is the emotional roller coaster ride with all the ups and downs. Some days are just easier, but other times it hits hard and I'm just down.
With this specific quote, I am working on accepting the new me. So much in my life has changed. I'm a new person living a new normal, with new fears, emotions and a very new reality that is in face and will be in my face for the rest of my life.
While I'm accepting this, I refuse to change who I am for anyone else. I have crazy emotions daily. I refuse to apologize for these emotions I am experiencing while I am literally fighting for my LIFE. If people find me angry or offensive then basically, they can fuck off. I have cancer. I AM angry & it IS offensive!! And if you can't understand that at all, then you have a fucking problem.
This blog has been and will continue to be a place for me to get the emotions out of my head. I don't want to keep it all locked up in my head. I would explode! I would break down and I would not be able to fight to live! So yeah, this shit gets out of my head here. I can manage it here, but I can't in my head.
I'm so grateful for the amazing support I have gotten from people, especially from where I would have least expected anything at all. I've reconnected with done great people from my past who have so wonderfully reached out with support and encouragement. It has meant so much to me to hear messages from people, through text or facebook, or emails... whatever. But hearing from people with short little "thinking of you" type messages are amazing! And reconnecting old friendships has been so nice too.
I've also connected with so many new people in the past six months who understand this process because unfortunately they are also in this "club". They get it. They understand the emotions and fears. Going through breast cancer, having surgery, going through chemo, losing your hair... these are things that as much as someone tries to empathize, you just don't understand unless you live through it. And I hope some day, no other woman needs to live through it.
I'm still hurt by people who never said a word at all from day one, the people who were supportive but vanished and those who were really just so hurtful with their utter lack of understanding or compassion. At first it was hard to understand the people who wouldn't even look at me or say a word to me. Everyone at work knew... I sent out an email to the 35 or so people who work there. People I knew for years never said a word to me. Some couldn't even look me in the eyes anymore.
At first, that was hard. But then I did my best to let it go. I finally realized that it was about them and their inability to handle it. They didn't know what to say to me or how to respond to what I was going through so just ignored the whole thing, including me. All about them, not about me. And I was able to let that go and move on to who and what was more important.
I had and still have a harder time with those who were originally there, but then drifted off. I have a hard time contacting people still. There are some I should just say hi to, but I really do feel like a bother now, with everything else that has happened since with others. Sad.... I'm now afraid to say hi to friggin FAMILY members because of what 2 people said to me. That sucks. I hope I can get over that for me. Those two don't deserve that much influence on my life.
I still don't understand why those two did what they did, said what they said and I still have such a hard time with it. I'm still hurt. I was sobbing for days because of what was written to me. I was depressed and so down when I asked for help, and got my ass slashed back instead, kicking me further down to borderline suicidal. And I was AFRAID to get help because of what they said to me!
**PLEASE NOTE!** If someone asks for help and reaches out, do not kick them in the face. You could possibly push a depression further down.
And I have had no contact or apologies from them for causing me pain... No nothing. From "friends"? It just proves to me without any doubt that the only thing I was wrong about was thinking these people who were previously in my life were actually my friends.
If I ever found out I hurt someone that much, ESPECIALLY if I did not intend it and truly cared about that person, I would make amends and apologize with everything I had. But that is who I am as a person. Not everyone is like that. And in my ignorance, I forget that sometimes.
When you hear the word cancer, things change. Life changes. Absolutely everything you can imagine changes. I am not the same person I was six months ago and I will never be that person again. I lost that innocence. Cancer took that from me.
I have a cut on my elbow that I've had for 2 weeks. I'm worried about it. I think I got a splinter on my right index finger on Sunday. Whatever it is, my finger is swollen. If it isn't better tomorrow, I have to call my doctor. A fucking splinter could be an issue!
Going forward, any cough, cold, fever, anything... could be an issue. Exercise? My upper arm feels dead and heavy. I worry about lymphedema. I could potentially get that for the REST OF MY LIFE. A cough? A back pain? Did it come back? Do I have any cancer in my lungs or on my spine? Because that can happen with breast cancer. This is something I will live with for the rest of my life. It will never be out of my mind. It is now a part of who I am.
As much as I have lost, I have also gained a few things. Things that once mattered? I realized how trivial and petty some of them really are. When you realize you could die, priorities shift a bit.
I have learned about things that are so much more important now. Qualities in people that I value have changed. Respect means something different to me now. I always valued respect and it was always important for me to have respect for the people in my life. Now it matters SO much more.
Jim has proven and earned the utmost respect from me. He is a man if character and honor. I respect him and love him with everything I have in me to give. He has been by my side since day one, taking on so much more than he ever should have had to experience with me, including my emotional shifts. He should be a saint with all that he has gone through. I would do absolutely anything for him. I love him with all I have to give.
Friends old and new have shown incredible kindness to me and have earned so much of my respect. The kindness that has been expressed has been overwhelming and emotional and just touching. I don't have any other words to express it. I am just touched by the love and kindness I have received by so many wonderful people. You all have earned so much of my respect. Please know how much that means to me and how much of a high honor I hold that.
Other, by expressing their true character to me, no longer have any of my respect. That's sad, that fall. But by showing how they can treat someone who is down and have no problem with how an emotionally fragile person could handle that, to have no remorse for the pain that was caused? How is it possible to have any respect left? What is there to respect?
Now I know what matters more to me. I know what is important to me. I understand what I value more now. I know that I need to continue to be positive to heal, recover and to get through the next year or so of treatment then however long the side effects continue to last, which could be years. To be in a positive place I need to have positive energy and support around me.
I am not going to be positive all the time. My emotions are fucking everywhere. Between the treatments, the drugs, chemo, hot flashes, mood swings, and just hearing the word cancer.... My emotions are everywhere. It is a terrifying journey. I need people in my life who can help me manage that better. I'm so lucky that I DO have people in my life like that. I am blessed for having you in my life.
An email, text message, Facebook message. Those are huge for me!! I cannot say how helpful and supportive just something like that is for me. Just a simple hello means the world. Thank you for all of the messages.
On this journey and going through recovery, I cannot have and should not have people in my life who add stress or anxiety, who put me down, judge or criticize me for how I act, think or deal with having cancer. That is not helping me to be positive. That is not giving me any of the energy I need to be in a good place on this roller coaster ride I never wanted. Those people are not getting tickets to the park. I can't have that in my life. I can't have them in my life.
Now that there is a bit of distance, even though I'm still hurt by everything that happened, how big an asshole would a person really have to be to tell someone who is an emotional wreck while going through fucking chemo all the things she is doing wrong? Like, um, being angry, because I should NEVER be angry having cancer, going through chemo or having drugs that fuck with my hormones and emotions. Or how about asking friends for help? Isn't that a HORRIBLE thing to do when you are between chemo treatments? Ask to spend time with friends? Yeah, I'm a bitch who puts "friends" on guilt trips when I reach out for help, support and company while I'm going through chemo and having my life turned upside down.
SO what they were telling me.... Never ask for help & never ever get angry when you have cancer!!! God for fucking bid! And I'm the bitch right? I'm the one with the problem. My problem was hearing cancer and being wrong about who I trusted to have in my life. Lesson learned!
Another thing I learned was about assholes that I thought were friends. I learned that there are some really selfish and horrible people in the world. For their sakes, I honestly hope karma isn't too bad. As horrible as they made me feel, as rude, nasty and cold-hearted as they were, I would still never wish for them to have to experience what I have been living through over the past 6 months. I would never want any woman to have to go through this nightmare, even people who treated me the worst of anyone in my life.
I am still working on accepting myself, this new me. With scars, bald & fat. With pretty much no self esteem. Feeling stupid with chemo brain. Living on an emotional roller coaster with only very short spurts of energy followed by intense exhaustion. Yup. Still trying to accept all of that as the new me but right now that is my life.
I'm still obviously so hurt that people I cared about could treat me as they did. Very smart women who I thought were friends. With their own experiences that they have had in the past year and a half which were heartbreaking, I honestly expected so much more compassion or empathy at the very least. I really thought I was a better judge of character than that but I guess that's another thing I was wrong about.
At this point, I'm not as angry as I was with them. I had eye opening experiences which gave them chances to show true lack of character, kicking and stomping on me when I was down and reaching out, shaking for help and support. I'm still hurt, but I'm also so disappointed. Being so wrong about people I really cared about is hard. Seeing people you care about really let you down, not in how they treat you, but in their actions is a big fall to see.
I guess that's part of the reason that Jim has earned such an unbelievable amount of my respect. I'm all over the place with emotions. Losing self esteem completely, having menopausal symptoms with not only hot flashes daily but with the highs and lows... Then toss in steroids which will be INCREASING next week. Chemo brain making me just feel so broken mentally. I can't come up with damn words! It is beyond frustrating.
I have literally forgotten entire conversations I've had with Jim. Entire conversations! Gone. I remembered that I had test drove a Jeep once. Not the Grand Cherokee, but a small SUV, like the Ford Escape sort of. A week later I passed a Jeep Liberty and remembered what it was. I honestly thought, maybe I didn't test drive a small Jeep. Maybe they don't make small Jeeps. That's how bad it is. And the frustration becomes so overwhelming. I feel like an idiot. Then I get upset about what I CAN'T do or can't remember. It sucks.
As far as feeling attractive? HA HA HA!!! Close to 20 pounds gained, God know how much muscle lost, 3 new scars on my body including 2 on my nippleless chest, then the bald head and soon to be no eyebrows or eyelashes. Wonderful world of cancer. Can you say sexy? Um, NO, I can't.
But again, there's Jim.
Tonight I wore a wig out to try it again. They aren't comfortable on my head. They just don't fit perfect, plus they are tight around the edges, scratchy and again, just not comfortable. But I wanted to try one. So I wouldn't look like the bald cancer patient again, especially having dinner out with Jim.
He told me I looked great I don't know how many times. He told me I looked beautiful and that if he didn't know me, he wouldn't know it was a wig. And that was just tonight.
For someone who isn't into giving compliments (his words, it just goes without saying, so he doesn't remember to say things like telling me I look great), the other night he gave me one of the best. He told me I was a beautiful person inside and out, with or without hair. He said I just radiate it. It was so nice to hear that from him and know that he really believes and means it.
I'm doing my best to release and let go of anything negative brought into my life. Some things are easier to adjust to than others. Some hurts are easier to get over than others. I've let some of the anger go that I had. I want to get to the point that I can forgive and completely let go of it. I'm not there yet. To be very clear, it would be purely selfish reasons to forgive. I don't want to hold on to that hurt for myself. Not for anyone else.
At the same time, I'm trying to find and focus on positive things. I am SO glad I am starting to exercise again. Yesterday was the YMCA and today was kickboxing. I didn't do anything on Sunday, but walked Rocco on both Friday and Saturday. Tomorrow I'm going to a free session at another gym, then back to kickboxing on Thursday. I want to be as active as I can. I get so much out of that. I NEED that.
The weather is getting better. I can be outside more. Jim and I are going to clear up the backyard and set up the new table and chair set we got. I want to have it set up to have people over for a cookout on the patio we built last year.
I'm half way through my chemo treatments. From what I have been told, the first half I had is worse than the second half, and that was from doctors as well as people who went through the same chemo cocktails I had and will have. The AC part is worse than Taxol that starts next.
I'm hoping that with working out, I'll start to gain muscle again and maybe even lose a little weight. At the very least, maybe tone up a bit from what I lost.
And I keep remembering all the wonderful people I have in my life. I have great friends in my life who have been so supportive, along with a great family around me too. My boyfriend is a friggin saint for everything he has done and put up with. HIS family has been amazing to me as well. They were all so nice and sweet at Easter (I still think they were lying when they said they didn't believe I've gained 17 pounds and that they thought I was hiding it well.... tent dress for Easter worked well I guess!) His cousin asked if I needed any rides for any treatments and she'd be more than happy to help. His dad and his mom's cousin also offered me rides too. They already do so much.
I've met amazing people in the past 6 months who have all been wonderful. Some I've only met online but there is a connection that cannot be broken. In the past 2 days alone, I have had really wonderful conversations with 2 other survivors who are both far ahead of me in this journey. Connecting with them and their understanding of this whole thing was almost a relief.
Its hard to explain. To talk to someone who has been there and who understands. When I try to explain chemo brain to someone who hasn't been there... they don't understand. If I say, forgetting words, or like losing your keys... don't tell me that you do that all the time. You do not forget that Jeep had a smaller SUV than a Grand Cherokee. You don't forget whole conversations, concepts, words. Over the weekend I said something to my friend Christine. I swore that she was here when Rocco was home. Nope. She never met him. I SWORE that she was here. Nope. Not sure who it was that I put those memories with, but it wasn't Christine. And I thought she had been over within the past 2 weeks. How sad is that?
So no, if you haven't been through chemo, you don't understand chemo brain. You don't understand the highs and lows that don't go away. You don't understand the fears, the isolation, the self esteem loss, the loss in general. You don't understand the nightmares and panic and overwhelming, out of control feelings. You don't understand feeling incredibly useless and stupid and a waste of space, unable to contribute to anything meaningful.
Talking with people who have been there, who do understand, makes it a little easier. It makes me feel more understood and no crazy and not so alone.
I'm also trying to focus on the future and fun and positive things that will be happening. SPRING! Its here. Okay so today it was cold, but whatever. No more snow, the sun is out, yesterday I had the windows open! I can take Rocco for walks when I have energy. I can clean up the yard, then set up the hammock to hang out on that! YAY!
I'm back at kickboxing and working out more regularly. SO much fun and feels so good to be around people that much more too.
Now I'm looking forward to my aunts birthday party I just found out about. I haven't gotten any info on dates yet, but her birthday is May 2nd and every year the party is at the local Chinese restaurant. She's mentally retarded and for her 60th birthday a cousin's son dressed up as her favorite, Spiderman. Since then, Spiderman has been by every year for the party. I'm not sure how old she is really this year. Maybe 66? Ask her and it could be anywhere between 31 and 39, depending on the year. Last year I think she was 32. One year she was 38. For a while, a few years at least, she was 36. I'm not sure when I got older than Rainnie!
Anyway... it is always a big party with so many extended cousins going to see her. There has to be at least 60 people each year in that little side private room. My aunt has such a great time being the star of her party and enjoying the day. It is always a blast to see my crazy extended family that day too.
I'm really looking forward to going, seeing everyone and having Jim there with me again this year.
Just like in this blog post, my emotions run all over the place every day, moment to moment. Right now with the news on in the background, they just did a skype interview with parents who's special needs son was lifted up and kissed by the new pope at the Easter Sunday service. I'm all choked up with tears in my eyes. I friggin cry at commercials! I had tears in my eyes when I was watching Katie today about adoption.
My life is a roller coaster ride. I'm on it and I can't get off. I have very little control with the track and where it goes. I don't know when I'll be uphill or head down a huge drop. Next thing I know, I'm flipping upside down. Its a never ending ride.
The only thing I can control are the people who have the ability to get on and off and join me for part of the ride. I am the ticket taker. Some people aren't allowed into the park, forget about on the ride. Others are in other areas of the park, I can see them off in the distance. Sometimes people get closer, right up on the edge of the fence watching the ride. When the coaster slows a bit, some jump on for a shot whirl with me, then head back into the bigger parts of the park, doing their on thing, enjoying their lives and families, but keeping me and my coaster out in the corner of their eyes, to watch and check in on me.
I'm in that front seat, seeing it coming at me right in my face. Jim has been in the seat next to me. Once and I while he needs to get out (on his own or I push him out) to go enjoy the rest of the park and to see what else the park has beside me and the roller coaster.
I'm holding on to the job as ticket taker. Not only for the roller coaster but for the park. I need to know who is in the park. There are some people who have left on their own. Some who never tried to get in. Others were escorted out by security with strict instructions on a no remittance policy due to the prohibited behavior.
Not having the ability to control the roller coaster track or speed leaves me with very little to actually control. It really only leaves me with who is on the ride with me, near the ride, in the park watching the coaster in the distance. Some can be in the park, but I'm not good with them having a seat on the ride with me. Others cannot be in the park at all. If it was my way, they wouldn't be in the state that the park is located in, that would be too close.
Eventually, the roller coaster will slow down. The ups and downs will thin out a bit. The turns won't be so sharp. It may start to feel a bit more like the merry-go-round eventually, who knows. That's a LONG way off. Right now, I'm still trying to get a bit more comfortable in this seat and I keep adjusting the safety belt to make sure it is secure and tight, but it can get awful uncomfortable at times.
To everyone who has been in the park with me, thank you for getting your ticket. When I'm up on those highs, I can see the whole park and everyone in it. Its overwhelming to see so many faces looking at me! When that coaster drops down, I'm hidden in the trees. It can get dark and scary and I can't always see others in the park. Sometimes I don't even know if someone is in the seat behind me or if Jim is in seat next to me. Those are hard times.
But then the next turn comes, I'm out of the tunnel and the sun is shining. I can see for miles again. Those are the good days and that's when life is fun again. That's when I forget that its a never ending ride and I just enjoy whatever the moment is. Those moments are getting more and more frequent, which is great.
If you know anyone else who is on a similar roller coaster ride, who has her own park that she is the ticket taker of.... if you want to know how to best support her, buy a ticket to the park. Tell her you want in. Let her know that you might now always be able to be on the coaster with her, but you want to stay at the park and always be able to see it, especially through the drops hidden in the trees.
Tell her you want a ticket for the coaster to use again and again for when she feels best to have more riders on and when it works for you to hop on for a bit. Let her know that you want to be there, at the park and on the coaster. Tell her that while you in other areas of the park, you can pick up things she might want or need on the coaster, if that's something you really can do. Offer specifics that you could bring with you to the coaster, and ask if those specifics could work for her, if she doesn't give you specifics herself.
Remember to pass her messages while she's on the coaster, just to let her know you are still in the park watching the ride while you can't be on it or up at the fence. A message painted in the sky or somewhere else she can see, just to say hi and that you were thinking of her would be SO much appreciated. Just remember, while she's on the ride, she might not respond quickly, or even at all. With all those twists and turns, ups and downs, her brain is shaken up. She sees it, but she might not get back to where it was to give an answer back to you. Even still, she will love seeing your messages, no matter how short, no matter where or how you get them to her. Just let her know that she matters to you and you haven't forgotten her.
This is really how my life feels. There is no other way to explain it to people. Its a ride I didn't ask to be on and would never buy a ticket to get that main seat. I wouldn't want anyone else to have to have that seat either. It isn't fun. There is a huge sisterhood out there of women who have that conductor spot on their own coasters, in their own parks. We can see each other from our own coasters, giving knowing smiles and nods while we looking from where we are at. Sometimes we can buy tickets companion tickets into their parks too!
So please keep my coaster in mind. I never know where on the track I'll be. I never know how close to another drop in the trees that I am. I never know when the next high will be or how high it will go... some feel like that just keep going and going. Until it stops and then the drop hits. Those spiral drops SUCK.
My actions, words, emotions... they are all tied to my roller coaster. This is my life.
Want a ticket?
I've also connected with so many new people in the past six months who understand this process because unfortunately they are also in this "club". They get it. They understand the emotions and fears. Going through breast cancer, having surgery, going through chemo, losing your hair... these are things that as much as someone tries to empathize, you just don't understand unless you live through it. And I hope some day, no other woman needs to live through it.
I'm still hurt by people who never said a word at all from day one, the people who were supportive but vanished and those who were really just so hurtful with their utter lack of understanding or compassion. At first it was hard to understand the people who wouldn't even look at me or say a word to me. Everyone at work knew... I sent out an email to the 35 or so people who work there. People I knew for years never said a word to me. Some couldn't even look me in the eyes anymore.
At first, that was hard. But then I did my best to let it go. I finally realized that it was about them and their inability to handle it. They didn't know what to say to me or how to respond to what I was going through so just ignored the whole thing, including me. All about them, not about me. And I was able to let that go and move on to who and what was more important.
I had and still have a harder time with those who were originally there, but then drifted off. I have a hard time contacting people still. There are some I should just say hi to, but I really do feel like a bother now, with everything else that has happened since with others. Sad.... I'm now afraid to say hi to friggin FAMILY members because of what 2 people said to me. That sucks. I hope I can get over that for me. Those two don't deserve that much influence on my life.
I still don't understand why those two did what they did, said what they said and I still have such a hard time with it. I'm still hurt. I was sobbing for days because of what was written to me. I was depressed and so down when I asked for help, and got my ass slashed back instead, kicking me further down to borderline suicidal. And I was AFRAID to get help because of what they said to me!
**PLEASE NOTE!** If someone asks for help and reaches out, do not kick them in the face. You could possibly push a depression further down.
And I have had no contact or apologies from them for causing me pain... No nothing. From "friends"? It just proves to me without any doubt that the only thing I was wrong about was thinking these people who were previously in my life were actually my friends.
If I ever found out I hurt someone that much, ESPECIALLY if I did not intend it and truly cared about that person, I would make amends and apologize with everything I had. But that is who I am as a person. Not everyone is like that. And in my ignorance, I forget that sometimes.
When you hear the word cancer, things change. Life changes. Absolutely everything you can imagine changes. I am not the same person I was six months ago and I will never be that person again. I lost that innocence. Cancer took that from me.
I have a cut on my elbow that I've had for 2 weeks. I'm worried about it. I think I got a splinter on my right index finger on Sunday. Whatever it is, my finger is swollen. If it isn't better tomorrow, I have to call my doctor. A fucking splinter could be an issue!
Going forward, any cough, cold, fever, anything... could be an issue. Exercise? My upper arm feels dead and heavy. I worry about lymphedema. I could potentially get that for the REST OF MY LIFE. A cough? A back pain? Did it come back? Do I have any cancer in my lungs or on my spine? Because that can happen with breast cancer. This is something I will live with for the rest of my life. It will never be out of my mind. It is now a part of who I am.
As much as I have lost, I have also gained a few things. Things that once mattered? I realized how trivial and petty some of them really are. When you realize you could die, priorities shift a bit.
I have learned about things that are so much more important now. Qualities in people that I value have changed. Respect means something different to me now. I always valued respect and it was always important for me to have respect for the people in my life. Now it matters SO much more.
Jim has proven and earned the utmost respect from me. He is a man if character and honor. I respect him and love him with everything I have in me to give. He has been by my side since day one, taking on so much more than he ever should have had to experience with me, including my emotional shifts. He should be a saint with all that he has gone through. I would do absolutely anything for him. I love him with all I have to give.
Friends old and new have shown incredible kindness to me and have earned so much of my respect. The kindness that has been expressed has been overwhelming and emotional and just touching. I don't have any other words to express it. I am just touched by the love and kindness I have received by so many wonderful people. You all have earned so much of my respect. Please know how much that means to me and how much of a high honor I hold that.
Other, by expressing their true character to me, no longer have any of my respect. That's sad, that fall. But by showing how they can treat someone who is down and have no problem with how an emotionally fragile person could handle that, to have no remorse for the pain that was caused? How is it possible to have any respect left? What is there to respect?
Now I know what matters more to me. I know what is important to me. I understand what I value more now. I know that I need to continue to be positive to heal, recover and to get through the next year or so of treatment then however long the side effects continue to last, which could be years. To be in a positive place I need to have positive energy and support around me.
I am not going to be positive all the time. My emotions are fucking everywhere. Between the treatments, the drugs, chemo, hot flashes, mood swings, and just hearing the word cancer.... My emotions are everywhere. It is a terrifying journey. I need people in my life who can help me manage that better. I'm so lucky that I DO have people in my life like that. I am blessed for having you in my life.
An email, text message, Facebook message. Those are huge for me!! I cannot say how helpful and supportive just something like that is for me. Just a simple hello means the world. Thank you for all of the messages.
On this journey and going through recovery, I cannot have and should not have people in my life who add stress or anxiety, who put me down, judge or criticize me for how I act, think or deal with having cancer. That is not helping me to be positive. That is not giving me any of the energy I need to be in a good place on this roller coaster ride I never wanted. Those people are not getting tickets to the park. I can't have that in my life. I can't have them in my life.
Now that there is a bit of distance, even though I'm still hurt by everything that happened, how big an asshole would a person really have to be to tell someone who is an emotional wreck while going through fucking chemo all the things she is doing wrong? Like, um, being angry, because I should NEVER be angry having cancer, going through chemo or having drugs that fuck with my hormones and emotions. Or how about asking friends for help? Isn't that a HORRIBLE thing to do when you are between chemo treatments? Ask to spend time with friends? Yeah, I'm a bitch who puts "friends" on guilt trips when I reach out for help, support and company while I'm going through chemo and having my life turned upside down.
SO what they were telling me.... Never ask for help & never ever get angry when you have cancer!!! God for fucking bid! And I'm the bitch right? I'm the one with the problem. My problem was hearing cancer and being wrong about who I trusted to have in my life. Lesson learned!
Another thing I learned was about assholes that I thought were friends. I learned that there are some really selfish and horrible people in the world. For their sakes, I honestly hope karma isn't too bad. As horrible as they made me feel, as rude, nasty and cold-hearted as they were, I would still never wish for them to have to experience what I have been living through over the past 6 months. I would never want any woman to have to go through this nightmare, even people who treated me the worst of anyone in my life.
I am still working on accepting myself, this new me. With scars, bald & fat. With pretty much no self esteem. Feeling stupid with chemo brain. Living on an emotional roller coaster with only very short spurts of energy followed by intense exhaustion. Yup. Still trying to accept all of that as the new me but right now that is my life.
I'm still obviously so hurt that people I cared about could treat me as they did. Very smart women who I thought were friends. With their own experiences that they have had in the past year and a half which were heartbreaking, I honestly expected so much more compassion or empathy at the very least. I really thought I was a better judge of character than that but I guess that's another thing I was wrong about.
At this point, I'm not as angry as I was with them. I had eye opening experiences which gave them chances to show true lack of character, kicking and stomping on me when I was down and reaching out, shaking for help and support. I'm still hurt, but I'm also so disappointed. Being so wrong about people I really cared about is hard. Seeing people you care about really let you down, not in how they treat you, but in their actions is a big fall to see.
I guess that's part of the reason that Jim has earned such an unbelievable amount of my respect. I'm all over the place with emotions. Losing self esteem completely, having menopausal symptoms with not only hot flashes daily but with the highs and lows... Then toss in steroids which will be INCREASING next week. Chemo brain making me just feel so broken mentally. I can't come up with damn words! It is beyond frustrating.
I have literally forgotten entire conversations I've had with Jim. Entire conversations! Gone. I remembered that I had test drove a Jeep once. Not the Grand Cherokee, but a small SUV, like the Ford Escape sort of. A week later I passed a Jeep Liberty and remembered what it was. I honestly thought, maybe I didn't test drive a small Jeep. Maybe they don't make small Jeeps. That's how bad it is. And the frustration becomes so overwhelming. I feel like an idiot. Then I get upset about what I CAN'T do or can't remember. It sucks.
As far as feeling attractive? HA HA HA!!! Close to 20 pounds gained, God know how much muscle lost, 3 new scars on my body including 2 on my nippleless chest, then the bald head and soon to be no eyebrows or eyelashes. Wonderful world of cancer. Can you say sexy? Um, NO, I can't.
But again, there's Jim.
Tonight I wore a wig out to try it again. They aren't comfortable on my head. They just don't fit perfect, plus they are tight around the edges, scratchy and again, just not comfortable. But I wanted to try one. So I wouldn't look like the bald cancer patient again, especially having dinner out with Jim.
He told me I looked great I don't know how many times. He told me I looked beautiful and that if he didn't know me, he wouldn't know it was a wig. And that was just tonight.
For someone who isn't into giving compliments (his words, it just goes without saying, so he doesn't remember to say things like telling me I look great), the other night he gave me one of the best. He told me I was a beautiful person inside and out, with or without hair. He said I just radiate it. It was so nice to hear that from him and know that he really believes and means it.
I'm doing my best to release and let go of anything negative brought into my life. Some things are easier to adjust to than others. Some hurts are easier to get over than others. I've let some of the anger go that I had. I want to get to the point that I can forgive and completely let go of it. I'm not there yet. To be very clear, it would be purely selfish reasons to forgive. I don't want to hold on to that hurt for myself. Not for anyone else.
At the same time, I'm trying to find and focus on positive things. I am SO glad I am starting to exercise again. Yesterday was the YMCA and today was kickboxing. I didn't do anything on Sunday, but walked Rocco on both Friday and Saturday. Tomorrow I'm going to a free session at another gym, then back to kickboxing on Thursday. I want to be as active as I can. I get so much out of that. I NEED that.
The weather is getting better. I can be outside more. Jim and I are going to clear up the backyard and set up the new table and chair set we got. I want to have it set up to have people over for a cookout on the patio we built last year.
I'm half way through my chemo treatments. From what I have been told, the first half I had is worse than the second half, and that was from doctors as well as people who went through the same chemo cocktails I had and will have. The AC part is worse than Taxol that starts next.
I'm hoping that with working out, I'll start to gain muscle again and maybe even lose a little weight. At the very least, maybe tone up a bit from what I lost.
And I keep remembering all the wonderful people I have in my life. I have great friends in my life who have been so supportive, along with a great family around me too. My boyfriend is a friggin saint for everything he has done and put up with. HIS family has been amazing to me as well. They were all so nice and sweet at Easter (I still think they were lying when they said they didn't believe I've gained 17 pounds and that they thought I was hiding it well.... tent dress for Easter worked well I guess!) His cousin asked if I needed any rides for any treatments and she'd be more than happy to help. His dad and his mom's cousin also offered me rides too. They already do so much.
I've met amazing people in the past 6 months who have all been wonderful. Some I've only met online but there is a connection that cannot be broken. In the past 2 days alone, I have had really wonderful conversations with 2 other survivors who are both far ahead of me in this journey. Connecting with them and their understanding of this whole thing was almost a relief.
Its hard to explain. To talk to someone who has been there and who understands. When I try to explain chemo brain to someone who hasn't been there... they don't understand. If I say, forgetting words, or like losing your keys... don't tell me that you do that all the time. You do not forget that Jeep had a smaller SUV than a Grand Cherokee. You don't forget whole conversations, concepts, words. Over the weekend I said something to my friend Christine. I swore that she was here when Rocco was home. Nope. She never met him. I SWORE that she was here. Nope. Not sure who it was that I put those memories with, but it wasn't Christine. And I thought she had been over within the past 2 weeks. How sad is that?
So no, if you haven't been through chemo, you don't understand chemo brain. You don't understand the highs and lows that don't go away. You don't understand the fears, the isolation, the self esteem loss, the loss in general. You don't understand the nightmares and panic and overwhelming, out of control feelings. You don't understand feeling incredibly useless and stupid and a waste of space, unable to contribute to anything meaningful.
Talking with people who have been there, who do understand, makes it a little easier. It makes me feel more understood and no crazy and not so alone.
I'm also trying to focus on the future and fun and positive things that will be happening. SPRING! Its here. Okay so today it was cold, but whatever. No more snow, the sun is out, yesterday I had the windows open! I can take Rocco for walks when I have energy. I can clean up the yard, then set up the hammock to hang out on that! YAY!
I'm back at kickboxing and working out more regularly. SO much fun and feels so good to be around people that much more too.
Now I'm looking forward to my aunts birthday party I just found out about. I haven't gotten any info on dates yet, but her birthday is May 2nd and every year the party is at the local Chinese restaurant. She's mentally retarded and for her 60th birthday a cousin's son dressed up as her favorite, Spiderman. Since then, Spiderman has been by every year for the party. I'm not sure how old she is really this year. Maybe 66? Ask her and it could be anywhere between 31 and 39, depending on the year. Last year I think she was 32. One year she was 38. For a while, a few years at least, she was 36. I'm not sure when I got older than Rainnie!
Anyway... it is always a big party with so many extended cousins going to see her. There has to be at least 60 people each year in that little side private room. My aunt has such a great time being the star of her party and enjoying the day. It is always a blast to see my crazy extended family that day too.
I'm really looking forward to going, seeing everyone and having Jim there with me again this year.
Just like in this blog post, my emotions run all over the place every day, moment to moment. Right now with the news on in the background, they just did a skype interview with parents who's special needs son was lifted up and kissed by the new pope at the Easter Sunday service. I'm all choked up with tears in my eyes. I friggin cry at commercials! I had tears in my eyes when I was watching Katie today about adoption.
My life is a roller coaster ride. I'm on it and I can't get off. I have very little control with the track and where it goes. I don't know when I'll be uphill or head down a huge drop. Next thing I know, I'm flipping upside down. Its a never ending ride.
The only thing I can control are the people who have the ability to get on and off and join me for part of the ride. I am the ticket taker. Some people aren't allowed into the park, forget about on the ride. Others are in other areas of the park, I can see them off in the distance. Sometimes people get closer, right up on the edge of the fence watching the ride. When the coaster slows a bit, some jump on for a shot whirl with me, then head back into the bigger parts of the park, doing their on thing, enjoying their lives and families, but keeping me and my coaster out in the corner of their eyes, to watch and check in on me.
I'm in that front seat, seeing it coming at me right in my face. Jim has been in the seat next to me. Once and I while he needs to get out (on his own or I push him out) to go enjoy the rest of the park and to see what else the park has beside me and the roller coaster.
I'm holding on to the job as ticket taker. Not only for the roller coaster but for the park. I need to know who is in the park. There are some people who have left on their own. Some who never tried to get in. Others were escorted out by security with strict instructions on a no remittance policy due to the prohibited behavior.
Not having the ability to control the roller coaster track or speed leaves me with very little to actually control. It really only leaves me with who is on the ride with me, near the ride, in the park watching the coaster in the distance. Some can be in the park, but I'm not good with them having a seat on the ride with me. Others cannot be in the park at all. If it was my way, they wouldn't be in the state that the park is located in, that would be too close.
Eventually, the roller coaster will slow down. The ups and downs will thin out a bit. The turns won't be so sharp. It may start to feel a bit more like the merry-go-round eventually, who knows. That's a LONG way off. Right now, I'm still trying to get a bit more comfortable in this seat and I keep adjusting the safety belt to make sure it is secure and tight, but it can get awful uncomfortable at times.
To everyone who has been in the park with me, thank you for getting your ticket. When I'm up on those highs, I can see the whole park and everyone in it. Its overwhelming to see so many faces looking at me! When that coaster drops down, I'm hidden in the trees. It can get dark and scary and I can't always see others in the park. Sometimes I don't even know if someone is in the seat behind me or if Jim is in seat next to me. Those are hard times.
But then the next turn comes, I'm out of the tunnel and the sun is shining. I can see for miles again. Those are the good days and that's when life is fun again. That's when I forget that its a never ending ride and I just enjoy whatever the moment is. Those moments are getting more and more frequent, which is great.
If you know anyone else who is on a similar roller coaster ride, who has her own park that she is the ticket taker of.... if you want to know how to best support her, buy a ticket to the park. Tell her you want in. Let her know that you might now always be able to be on the coaster with her, but you want to stay at the park and always be able to see it, especially through the drops hidden in the trees.
Tell her you want a ticket for the coaster to use again and again for when she feels best to have more riders on and when it works for you to hop on for a bit. Let her know that you want to be there, at the park and on the coaster. Tell her that while you in other areas of the park, you can pick up things she might want or need on the coaster, if that's something you really can do. Offer specifics that you could bring with you to the coaster, and ask if those specifics could work for her, if she doesn't give you specifics herself.
Remember to pass her messages while she's on the coaster, just to let her know you are still in the park watching the ride while you can't be on it or up at the fence. A message painted in the sky or somewhere else she can see, just to say hi and that you were thinking of her would be SO much appreciated. Just remember, while she's on the ride, she might not respond quickly, or even at all. With all those twists and turns, ups and downs, her brain is shaken up. She sees it, but she might not get back to where it was to give an answer back to you. Even still, she will love seeing your messages, no matter how short, no matter where or how you get them to her. Just let her know that she matters to you and you haven't forgotten her.
This is really how my life feels. There is no other way to explain it to people. Its a ride I didn't ask to be on and would never buy a ticket to get that main seat. I wouldn't want anyone else to have to have that seat either. It isn't fun. There is a huge sisterhood out there of women who have that conductor spot on their own coasters, in their own parks. We can see each other from our own coasters, giving knowing smiles and nods while we looking from where we are at. Sometimes we can buy tickets companion tickets into their parks too!
So please keep my coaster in mind. I never know where on the track I'll be. I never know how close to another drop in the trees that I am. I never know when the next high will be or how high it will go... some feel like that just keep going and going. Until it stops and then the drop hits. Those spiral drops SUCK.
My actions, words, emotions... they are all tied to my roller coaster. This is my life.
Want a ticket?
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