What do I see?

For the past few days, I have still been dealing with pain in my legs off and on, sometimes a lot worse than others.  I've noticed that its more severe in the early morning and again in the late evening.  Sometimes the pain has been so bad, it has brought me to tears.  I'm doing the best that I can to manage it. 

Yesterday felt a little better.  I think a combination of the vitamins I've been taking along with being active has helped.  Yesterday around 1 I took a walk down to CVS to pick up my prescriptions (including the strong Vicodin) plus a few other things, then I joined Jim in the yard.  He ripped out some of the stuff growing around the edge of the fence and I raked up the front and side of the house, plus the back yard.  Doing all that got me tired and muscle sore, but in a good way.  And again, I think it helped out my with my legs.

Luckily while I was at CVS I bought more sunscreen; we need to finish the yard today.  But yesterday I had on 100+ sunscreen on my face, neck, arms and legs... anything exposed.  I was outside in total from about 12:45-3.  It was cloudy most of the time with only a little bit full on sun.  I had on knee length sweats, a big baggy Tshirt, a bandanna on my head to get my neck, then a baseball hat over that so I had the brim to cover my face, plus sunglasses.  And it was only in the low 60's.  I GOT A SUNBURN ON MY NOSE AND CHEEKS!  With a 100+ sunscreen and all of that covering me?  WTF!  My face was pretty purple last night.  It mellowed out a bit, but I need to be a lot more careful today.  I think part of it was wiping the sweat off of my face now and again.  Its just something I need to be more aware of.

Today we will be back out in the yard, finishing up.  We are going to put out the hammock stand and then the patio table, chairs and umbrella set too.   I worked hard yesterday to get that back yard in good shape, so now not too much is left to finish it up today, if Jim is on board for helping me!  :)  But I just want the yard to look nice and be a nice sort of get away outside. 


Yesterday afternoon, I was thinking about how I look.  Before all of this, before cancer, when I thought about what I looked like, I could see me.  When I saw pictures of me, I didn't think about anything... I just saw whatever picture it was of me.  Now?  That's all changed.  I've changed. 

Between gaining weight and then my hair, so much in how I look has changed.  And so much of my identity is in how I look.  I don't know what that really is anymore.  I miss what I used to look like.  I miss my hair and I miss my body.  This morning when I got on the scale, I actually stood on it long enough for it to register everything.  I am up 18.6 pounds.  That was from the last time that I saved my weight on the digital scale.  And I'm actually DOWN 2 pounds right now.  WTF!

I start thinking about me over last summer.  I went to the Cape with my parents for 4th of July week, Sunday to Sunday.  Jim came down on the 4th, Wednesday morning.  I think it was Tuesday afternoon, after I got back from the beach, that I took a cheesy mirror picture (like in a bad dating ad) to show Jim the tan I got in the few days I was down there at the beach. 

Then I think of me in Puerto Rico in November, in my dress with my long hair.  I didn't really have any pictures of me after that through the holidays.  And without pictures, I can't even think about what I looked like now. 

It was the Sunday after Christmas that I got my hair chopped off.  I have those pictures from that day.  Seeing my hair gone and trying to put on a happy face.  It was the following Saturday night that we had the Boudoir Party photo shoot that I did with my friends.  I can see how I looked in those pictures, after my 2nd round of fertility treatments, when I had already gained weight. 

Then I had my surgery.   And right after that I colored my short hair purple.  But I only had purple hair for about a month.  That's about when it started to fall out from chemo and when I shaved it off to not watch it fall out bit by bit. 

On March 11th, the Boudoir photo shoot photographer did the other photo shoot with me at her studio.  Those are pictures of me bald, with head wraps and with wigs. 

Then there was the party I went to with friends, dressed up and bald.  The Betty Boobs Fundraising Party on March 22nd. 

So who am I now?  What do I look like?  I have wigs, head wraps, hats, bandannas and then me bald.  I have me from last summer with 6 pack abs and me now with none.  Who am I now?  What do I look like? 

When I picture myself in my mind, I don't know what I see anymore.  It is so hard to imagine myself in my head since so many things have changed.  When I get ready now, it depends on what I do with my head for what I look like.  Each time in the mirror can be different. 

That's been so hard.  I don't know what I look like anymore.  I can't picture what I look like when I think of me.  I see all of those snapshots of who I was at different points from 4th of July week in 2012 (before cancer), to now, 18.6 pounds heavier, no muscle and bald. 

This is what I see.

 

 

July 2012

Puerto Rico, November 2012

 

December 30th, 2012, Day getting hair chopped off.

 

January 5, 2013, Boudoir Party Photo Shoot

Short Purple Hair

 

March 11, 2013 Photo Shoot

 



Betty Boobs Fundraising Party on March 22, 2013

 

These aren't even all that I have.  There are more wigs, more hats, more head wraps.  There are different glasses, different accessories, different makeup. 

What do you see?  What do I look like?  What do I see? 

Off Day

From day one, I was told that with the chemo I'd be taking, the first four treatments would be harder than the 2nd four on Taxol.  Stronger side effects, tougher on my veins, all of it.  Once I got through those, the 4 on Taxol would be a breeze.

Well, I guess I do things my own way.  The first four?  Fatigue, yup.  Chemo brain, yup.  Nausea?  Not really.  Sick and puking?  Not once.  I honestly was a little nervous for NOT having the side effects that I heard about.  I worried if the chemo wasn't working right since I wasn't feeling like crap all the time.

But now?  HA HA!  SO much for the Taxol being a breeze!  I felt so sick this morning.  SO sick.  And I'm really starting to feel the pain in my legs again.  Right now its on my right leg, in my foot, in my knee.... it just hurts!  But my CVS text came through that my new and stronger Vicodin prescription is now ready for pick up. 

It wasn't easy this morning.  I really felt like absolute crap.  This was the worst I have felt for any chemo treatment, out of the 6 that I have gone through.

Hmm.... 6 down.  2 to go.  75% through chemo.  3/4's of the way done.  Nice way to look at it.  If I'm running a mile at the track, its only one lap left to go.  I can get through the last 2 treatments, but holy shit this one sucks!  The pain can be overwhelming at times.  Shooting through my legs.  And I was just not expecting to feel sick this morning.  Not sure what happened this time around. 

I slept last night and slept great!  I was in bed by 10:30 and didn't get up until after 7.  I took a nap this morning too.  And right now I am exhausted and can't lift my head up.  I'm afraid to eat anything that isn't bland because of the flip flops my belly was doing all morning. 

Another step, getting through today.  Then I can worry about tomorrow. 

Moving Forward

Yesterday was another chemo day. I've been tired today and got my morning nap in which lasted a little longer than typical. I got a slight energy burst that I took advantage of by doing laundry and picking up around the house. Since then I've been back on the sofa, for the past couple of hours.

I'm nervous about how painful the side effects of this round will be. My oncologist gave me a prescription for a stronger Vicodin than I have already. I'm hoping I won't need it, but I think that's not going to be a reality. I'm just trying to prepare for it and how I will feel when it starts up.

At the same time, I have still be trying to process and get through the drama that happened and brought me down. I'm still in shock about it all. And hurt. For someone who knew I was fighting a depression desperately, I am at a loss as to why she would do what she did. Sending me an email to point out every way that my feelings are wrong, then to cc in 9 others. When I was already fighting a depression? Why would someone do that? How could that ever be okay? What would make someone believe that would be a good decision? Kicking someone who is down, depressed and going through cancer treatments? Adding in other people who weren't involved? I'm hurt, shocked and angry that someone could be so intentionally malicious and cruel. That is something I will never ever forget. Ever.

This blog is MY blog. This is where I get out all of the feelings and emotions that I have during this journey. To take how I am feeling, to spend the time to copy and paste my words, to cc in others? I don't understand that and I never will understand the motivation for being so completely vicious to someone fighting cancer.

Today I was scrolling through Facebook and seeing what was there. I "like" a bunch of pages that give links, plus links people post, that I love to read and review. I'm copying a few here that really caught my attention.

First was a link to a blog post called, "How Not to Say the Wrong Thing"

Part of what was written was:

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma.
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.

Right now, with cancer, unfortunately, I was in the center ring. I didn't ask for that. I didn't want that. I never asked for cancer. I don't know what emotions I'm going to feel in a day, in an hour or in 5 minutes. Things change for me all the time. Minute by minute. I just have to roll with it and see where it brings me and do my best to get through whatever happens or whatever I am feeling.

I am taking drugs that cause intense side effects, emotional side effects. To feel attacked and to be told that my feelings are wrong is what is wrong. My feelings are my feelings. Everyone is entitled to have their own, just as I have mine. No one has to like what I feel, but what I feel is not wrong. And no one has the right to tell me my feelings are wrong, especially now! Especially knowing that I have been fighting depression.

Never did I ask for this. And I would never want someone else to have to go through this. That's why I wanted to be involved in changing laws in Massachusetts for breast density, so other women wouldn't have to go through this. That is why I was passing that information on to friends, so they wouldn't have to go through this.

I have been trying so hard to let it go and to focus on the amazing support I do have. I love hearing from people! I am SO grateful for Jill, taking her 3rd day of work off in 1 1/2 weeks to help me yesterday and be my chemo bud! It means the world to me that she was there for me and kept me company and tried so hard to distract me when I was getting my IV.

I loved that Christine and Carrie took their lunch breaks to come by and say hi while I was at chemo. That means so much! I am SO grateful for that. I love the text messages I get, the cards that are mailed, the facebook messages and emails I receive with people just checking in to say hi. That all means the WORLD to me! I am so lucky to have all of that and to have so many around me, supporting me day after day.

Even Jim's mom sent me a text message yesterday to wish me good luck on chemo day and to check in with me. Not everyone has that. No everyone has the great support that I have. I'm so lucky for that. Even kickboxing! The studio is amazing, from all the trainers, the owner, and everyone at the studio wishing me well. I'm just lucky for all of that.

But when I am kicked in face, especially from those I would last expect it from, it hurts. The email I got 2 weeks ago was the last thing I expected, just as I was starting to dig myself out. It pushed me down so far, to a place I did not want to be. I just never thought someone would ever be so cruel, so hurtful, so intentionally, purposely malicious. To add in 9 other people to that email?

There were people in that group, most I am assuming, who had no idea. I had talked to 2 people before any emails happened. Those are the only 2 people I spoke to about any details after the emails. I didn't share enough specific information purposely, so even those in that group, IF they read this blog, would not know who I was referencing. After the conversation I had on Monday afternoon, I was told most people in the group knew. Well, I talked to 2. That was it. If others knew, that was on her, not me. And now, after she added in 9 others into the email, they all know. So what difference is it if I put her name in my blog now? She already put herself out there. That was her choice.

Anyway.... I'm still working on getting over the hurt and anger associated with the drama. Funny part, I had been thinking how high school it was for her to add in 9 others. Where I grew up, I think the mean girls out grew that sort of thing by high school. That was more a middle school kind of thing, bring that many others into the drama. And here she is at 40 years old pulling that sort of shit. That part really does make me laugh! At least I can laugh about something with all this bullshit.

Here is the link to where I got this from:
http://www.latimes.com/news/opinion/commentary/la-oe-0407-silk-ring-theory-20130407,0,2074046.story



The next thing on Facebook that caught my attention was, 10 Things you must give up to move forward.

Number one speaks volumes to me! Letting the opinion of others control your life. Yup, one I need to keep reminding myself about. I wish I was feeling good about myself right now. But I'm not. My opinion of me, how I look and how I feel, isn't good. I'm doing my best to work on that and feel better and to get some self esteem back.

The second part of that, "You have to do exactly what's best for you and your life, not what's best for everyone else." That's what I have been trying to do and what I will continue to do. What I feel is best for me. I know that writing in this blog is good for me. It is where I can clear my head and get out fears, anxiety, hurt, and even happiness and gratitude. This blog will continue to be exactly what it has been and will not change.

I will nap when I need it, listen to my body, exercise when I can, and not keep my feelings locked up. I will do what I feel is best for me and my life, especially now, going through treatment and getting through everything on this journey.

#2, letting go of the shame of past failures. I like the second bullet on that one, "All that matters is all you do right now." I know that I put Jim through so much crap, especially back in November and December, after being diagnosed, before surgery. The unknown, anxiety, lack of control... it was insane. I was having panic attacks at least weekly. It wasn't good. I was yelling at him, screaming. I put him through so much.

I'm lucky that I know he forgives me for what happened and he understands that it was the anxiety I was going through. He knows how much I love him. Every day I try to express that, to let him know how much he means to me and how much I love him. And I know that he knows that. I try to do little things, things I can do, to show that to him. When I have energy, I clean the house. When he is going to be home at night, I try to cook dinner for him. I do the laundry, fold it and put all of his things away for him. I do what I can to help him, in ways that I can. It matters what I do now, now my panic attacks from November. I can let go of the shame of that and what I put him through.

#3, being indecisive about what I want. Hmm... that's a hard one! I know I want to be healthy and cancer free. I want to surround myself with positive energy, support and people. I want to exercise and rebuild my strength physically. I don't know what I want to do after treatment is over. I have no idea what I will be doing in 6 months from now, forget about a 5 year plan! So yeah, I'm very indecisive about my future. That's hard. I need to make a plan and work towards that future. But I have to figure out what the plan will be first. That's the hardest part for me right now.

I'm in what I'm in. I still have a hard time seeing out of it, seeing my future. Maybe that is part of this, going through treatment, having a disease that could have killed me, and at some time in the future, really could come back. Maybe that's why I have such a hard time with the future, making future plans. The future is uncertain. I'm getting through today, through treatment, but seeing past that point, seeing my future without cancer, without treatment, that's hard to imagine right now.

#4, procrastinating on the goals that matter to me. That just goes along with the last one. I know what I want and I do take steps to get there. Its what I'm indecisive about that I struggle with. And working on making goals, determining goals, that I procrastinate on, even though it is import to me. Maybe that's fear, I don't know. I want to move forward. I want to make a difference, but I don't know how that will look or how I want to pursue that. And I continue to procrastinate on working on how to figure it out. I don't know what I want my future after treatment to look like.

#5 Choosing to do nothing. Wow, these are all a theme, huh? I have been choosing to procrastinate and do nothing about planning for a future after treatment. I don't know what I want and I haven't been doing anything to figure it out. I need to start doing SOMETHING to figure out what I want my future after treatment to look like.

#6, my need to be right. Interesting one. Giving up a need to be right. Yeah, everyone wants to be right. I have no problem saying, lets agree to disagree. I know not everyone is always going to agree. God knows that Jim and I don't always agree on things. I just let it go.

I think, especially with the drama that has been going on, it isn't so much as needing to be right, but more about not having my feelings validated. Instead having my feelings stomped on. I've said it a million times, feelings are feelings without a right or wrong. They just are. Everyone has feelings and opinions (just like everyone has an asshole, doesn't mean anything other than it just is!) But I think now, I need to let that part go. I need to let go the need to feel like my feelings should be validated and not put down. Even though I do believe that, I can't hold on to that.

#7, Running from problems that should be fixed. HA HA HA. That's a funny one.
Okay, 2 parts. Yes, I'm running, avoiding, procrastinating, blah blah blah, about my future. Yup, I admit it. Things aren't going to change at all if I continue to do nothing about it, if I continue to not try to figure out what I want my future to look like. Running from that won't fix it.

Second part? The drama.... I don't think I'm running from anything with it. But I know there is nothing to fix. What is done is done. I'm changing how I feel about things, to let things go and move on. But relationships to fix? No, there is no fixing of anything at this point. Things are done, things happened. I'm moving forward in my life, doing what is best for me, without continuing with some relationships that I had in the past. That's fine. Nothing wrong with that.

That one ends with "Love the people in your life who deserve it". I really believe that. And I really do love the people in my life who deserve it. I'm so lucky for the incredible family and friends that I have around me. So lucky for the support that I have. Sometimes it gets overwhelming to know that and to feel that. To have people I haven't talked to in YEARS reach out to me to offer support and encouragement and to genuinely mean it, that means more to me than I could every possibly express. Ever express! People I went to high school with, who other than the one reunion I went to (my 10 year), I haven't seen since HS! Friends I had lost touch with years ago, reaching out and driving 45 minutes to 1 1/2 hours to come to visit me. How amazing is that? (okay the 1 1/2 hours might have included a detour-aka wrong turn- to Rhode Island but still, it was 1 1/2 hours to get to my house for her that day!) :)

I'm just very grateful for the people I have in my life, the support that I have. Please know how much I love all of you. I wish I was better at expressing that and letting others know how I feel about them. There are too many people for me to list out here. But those of you who do show me your support, with your kind words, messages however you send them to me, even if I do not always respond, please know I read the messages, love them so much and appreciate them with more than I could tell you. I do love the people in my life.

#8. Making excuses rather than decisions. Yeah, I have excuses. Why am I fat and why did I gain 20 pounds? I stopped exercising 5 days a week, sat on the sofa, started eating like crap, went through fertility treatments with daily injections, had major surgery with a 6 week recovery and then started chemo which includes steroids plus other crazy drugs. Yup, I have excuses!

I'm trying to work on the eating habits and I am SO excited to start exercising again. I hate the fatigue that I have, which does damper that for me, but I do my best to work around it. I went to kickboxing last Thursday, didn't do anything on Friday. Saturday and Sunday I walked. Monday I did my couch to 5K and did NOT expect to get in the jogging portion, but I'm glad I did. Yesterday was chemo and I didn't do anything. As of now, I've cleaned up around the house, but no actual exercise at this point. So I'm trying. A little bit. Something is better than nothing, right?

Sometimes, like with figuring out my future, instead of having an excuse, I think I just admit what I what I am doing. And then that in itself is my excuse. I'm procrastinating, doing nothing, indecisive, choosing inaction. I admit all of that. And I think that admission becomes my excuse. See, I know I'm doing nothing, I'm admitting it, so that's a step. But that's just an excuse, not an admission.

#9, overlooking the positive points in my life. Okay, I sometimes do that. Not always, especially when I talk about how much I appreciate the support I have and the people in my life. But other things, I do overlook. But when I'm down, it is hard to see too many positives. Trying, but not all the way there. So I'm trying to focus on the positives that I do see. That will bring other positives into light for me and it will continue to grow.

#10, not appreciating the present moment. Right now, with treatment, all I have is the present moment. I am struggling to see a clear picture of my future. So yeah, I'm all in for the present moment. Right now? The heat is off, the windows open with fresh air blowing in the clean house. I have Sirius XM playing with Coffee House station playing softly. I'm on the sofa, with Rocco laying next to me. My leg is his pillow as he's snoring taking up most of the sofa. Sometimes I can see his legs twitching while he's dreaming. I'd love to know what he dreams about!

I can see the sun coming in through the windows and blue sky outside. I can hear the traffic outside with music playing from car stereos. Some sirens are blaring from the fire station nearby.

I know I'm tired. I pushed it a little too much this morning while I was trying to clean. That burst of energy was great but I did too much.

My life is filled with great people, great support and of course my amazing and incredible and unbelievably supportive boyfriend.

I started writing yesterday in the afternoon, but never clicked on "Publish", so that one is still sitting in my drafts.  This blog has been my place to get things out of my head.  This has been a way for me to deal with the emotional roller coaster I have been on for the past 6 months.  My emotions change by the minute.  Even re-reading a blog post, it is easy to see the emotions I am feeling and how much that they can change just as I am writing. 

My feelings, my emotions are just that, my feelings and emotions.  There is no right or wrong for that.  They just are.  That's it.  To get attacked on my feelings, to be judged for how I am feeling when I am already fighting depression is so difficult to handle for me.  It has been a daily struggle and I am doing the best I can. 

I am not the same person I was when I found the lump.  I can't be that person anymore.  I have gone through too much.  The drugs I take have caused SO many side effects.  It isn't "as I call it" chemo brain.  It IS chemo brain.  Here is info on psychcentral.com from 3 days ago about a newer study which measured the neuropsychological changes in the brain while on chemo.  Chemo brain isn't something I just made up.  It is something I live with every damn day. 

I'm am so scared of chemo today because of the side effects I am expecting to feel later this week.  I am praying that the pain I had 2 weeks ago is not more intense.  If I was already needing Vicodin to manage it without success, I'm afraid of what it could be like this time, since the effects can be more intense after each treatment. 

Right now, all I can do is manage as best I can what is going on in my daily life.  I am trying to find a new normal that changes faster than I can process.  I'm not one who loves change.  I still have very little control over what is going on in my life.  I'm managing.  Its all I can do. 

With all of the drama, with so many brought into this who had no idea what was going on (at least from me.  Someone else may have passed info along, but that is not on me), I have been doing my best to only think of the positive and to try to focus on that.  So much easier said than done.  But its all I can do. 

The weekend was really good and that made a huge difference.  Yesterday morning was great too.  So was last night.  (not so much the afternoon, that set me back a bit.  Disappointed that the whole email mess was brought up, caused an argument and may have caused damage to a friendship I do not want to lose.)

Last night was the first session of the Couch to 5K training.  This is the 8th time I have done this running group and last night had so many new faces.  It was great to see.  Granted it was 60 seconds of jogging and 90 seconds of walking, for 8 rounds, but I DID IT!  I haven't done any running since the walk/jog thing I did 4 months ago at the Diva Run Half Marathon in Puerto Rico!  It felt great to do something like that.  I surprised myself.

SO I am doing my best to focus on those things.  The good things.  The support I do have around me and those who are so encouraging and understanding of everything I am going through.  That just means the absolute world to me.  Thank you all for all that you do.  I cannot express that enough. 

I know without the support I have gotten, I would not have made it through to this point.  So thank you again! 

Because I felt attacked on how I feel, based on what I wrote, it is so disappointing that this blog, my place to openly express myself and to get all those swirling feelings out of my head isn't as safe as it was.  And that sucks.  I'll get back there but I'm not going to post everything I wrote on Monday.... Only about how great my weekend was and how wonderful the support I got from amazing friends. 

Today is chemo day.  My fingers are crossed.

Below is what I wrote yesterday.....

My plan for today after my massage and after I was fitting for a lymphedema compression sleeve, was to come home and relax for a bit before heading to the track to start this year's Couch to 5K training. While relaxing, I was planning on writing here, about how great the weekend was and how the things I did, the people I saw, really helped me and helped me feel so much better. So I'll start with that.

Friday night I was grateful that the police caught the monsters who created so much heartbreak in Boston last week. It isn't over and so many people have long roads ahead of them. But I'm glad this part is done, one is dead and the other is caught.

Jim and I were out for dinner Friday night, even with all the TV's on CNN watching everything unfold, it was nice to be out with Jim and connect with him. He's been so busy working ALL the time and I like when we get to spend some time together.

He was working at home most of Saturday. My friend Melanie and her daughter came down and the 3 of us went out for lunch. It was fun to hang out with them and Aly is such a sweetheart! After lunch we all took Rocco for a walk. He was great. And he was so good with Aly too. She was happy to finally get to meet him.

Jim was working until about 9pm on Saturday. After Melanie left, I had the TV on plus napped on the sofa. That night we watched a movie after he was done and I was laying in his arms for that. Love the snuggle time. :)

Sunday was originally going to be breakfast with a friend, but we got a late start, so Tracie picked me up and we headed to the beach for lunch. I completely forgot their was a 5K at the beach on Sunday, but it nice to see the runners heading by. We saw a few people we knew (or course either when we were inside the restaurant or after we realized who they were after they passed us by!).

Although it was a little cool and windy, we took a great walk on the beach to just enjoy being outside and the salt air. It was great to catch up with Tracie too. The whole day wiped me out.

I don't think it was too long after I was home, when I was asleep on the sofa again. Seems to be my daily thing now. (Still having a ton of fatigue, which is pretty frustrating!) When Jim was done working, we were able to spend a little time together again. Even if its just for 15 minutes that I get to connnect with him, it just means so much to me!

This morning it was SO hard to get up. The alarm went off at 6, but we weren't up until after 6:30 with a few snoozes. While Jim got ready for work, I had my coffee and cereal, watching the news. He was out the door before 7:15 and I swear I was asleep again before 7:30. It was after 9:30 when I work up.

Today I missed the class at the Y. It starts at 10 and its 25 minutes away. No way I could have made it. So instead, I went slow, then got ready for my 11:30 massage. That was AMAZING! Even though I still have knots in my back, I love Sally. My entire 1 hour massage was only on my back, shoulders and neck. And I still have knots. SAD!

When I have tension, all of that lands in my shoulders. The longer I have it and the worse it is, it starts to move up my neck and into my jaw. I could already feel it in my jaw. NOT good. Which I why I had the appointment with Sally. Glad it made a difference, but I can't wait to go back for another one. Too much going on starts to pile up.

After the massage, I hit a drive-thru for lunch, then went to get fitted for my lymphedema compression sleeve. Unfortunately, they don't keep smalls in stock, so I didn't get to take it home today. She was going to order it for me and said she should have it in week. That will be great, so I can see if I feel different after using it.

All of what happened over the weekend, the time with Jim, seeing good friends, having fun and being able to relax, it all helped to make me start to feel a tiny bit better after the last email me and 9 others got. I was starting and trying SO hard to get past it. Not easy for me to do, but I was trying.

Depression

I'm still so heartbroken by Monday's events.  I hope with today's release of pictures, they will find these monsters and bring them to justice.  My personal thought is that when they said to not approach the suspects, that was for the suspects, not the public.  If these 2 are found in Boston, they would be approached.  And then, there won't be a need for a trial.  Whoever here would that found them would serve justice.  Boston Strong. 

I've been obsessed with the news all week.  I don't know if its being from here, having so many from my home town so severely hurt, or because I'm thinking of something else.  I've gotten my mind, at least for minutes here and there, off of how I'm feeling. 

Because I haven't been feeling great.  I've cried every day.  A good day is when its only once.  Not sure if that has happened more than yesterday.  Not today though. 

When I was first diagnosed, I was an emotional mess.  I had so many panic attacks, I can't even count them.  I was crying, screaming and sobbing and hyperventilating, flipping out at Jim.  I ran outside to sit on the front porch after midnight in my pajama's and slippers to catch my breath!  Yes, I was a mess. 

But I wasn't depressed.  Not then. 

In February, I was falling and I knew it. That's why I sent an email out to friends.  I knew I needed help and that was my way of reaching out.  A month and half ago, the weekend I got 2 crushing emails back, that's when I got worse.  That's when I started in depression.  I did not stop crying for days with those two emails.  I started in a dark place. 

For the past month and a half, I have been trying and fighting and looking for ways to get myself out of it.  I have tried to focus on the incredible support from people that have been there for me.  I have tried to start to exercise again, something that has always been such a help for me.  I have tried so many ways to start to feel better.  Slowly, I was starting to get there.  Baby steps and still so hurt, but slowly trying to get myself out of where I was.

Then last week. Then that long, thought out, time consuming email to me and 9 others.  Then I got that email. The email that pointed out every way she thought I was wrong in how I felt.  Sent to me and 9 others. 

That night, that email, pushed me so far back, into a place I have tried so desperately not to be.  That night, I did think of all of the meds I have in my house.  The Vicodin, the percs, the steroids, the anxiety meds, and God knows what else.  What a combination of drugs! 

The only reason I didn't take them was Jim.  I couldn't do that to him.  But I thought about it.  I considered it.  And I knew that night and I know now, I couldn't do that to him.  I won't do that to him. 

For the past week, I have been in the worse depression I have ever known.  I have cried every single day.  I sleep all the time.  I have canceled so many things with so many people.  All I have done is pull back and pull away.  And pretend.  I pretend to make other people feel better.  I don't want to put my mess onto everyone else.  So I pretend.  That it isn't like this.  Now my go to answer is, Some days are better than others.  Better than saying that I'm a mess and my pathetic URGH Whatever the fucking word I'm looking for is, my life sucks.  I don't have one.  I'm on the sofa with the dog. 

The only thing I didn't personal cancel this week was what I had yesterday.  My support group was canceled.  I still me to work friends for lunch.  My appointment with my social worker was also canceled.  The two things I probably needed more than anything else right now.. and those were canceled and not me.  I KNEW I needed those and was so disappointed not to go. 

I don't want to put my crap on everyone or anyone else.  I just don't know how to get out of this! 

For 6 weeks I have been FIGHTING to feel better emotionally.  I have been so sensitive to everything.  That email hurt me so much.  I was angry and so hurt.  9 FUCKING PEOPLE!  Seriously?  FUCK YOU AIMEE!  And I hope you ARE reading this!  FUCK YOU!

I was suck a fucking mess already.  FIGHTING to dig myself out of it.  FIGHTING.  To take the time to write an email, copying and pasting parts of this fucking blog to make your points about me being wrong about HOW I FEEL!  And then to cc in 9 other people?  Am I am fucking high school?  Why would you do that?  And if you knew I was such a mess and so hurt and depressed, why would you try to push me over the fucking edge? 

Right now I don't know how to get out of this.  I don't know how to feel better.  I don't know how to help myself with this or what would even help.  I've tried to call a few people.  Either it goes to voice mail or in some cases I was pushed to voice mail.  And after so many emails went unanswered, it is so hard for me to reach out now.  Not reaching out and not asking for help is so much easier than no response or worse... an email telling me how horrible I am or how wrong I am. 

Everything hits me now.  Last night was another fight with Jim.  I hate that this is starting to impact my relationship with him so much.  He just doesn't deserve this at all.  He's too good for this and for the mess that I have become. 

I'm so insecure about everything now.  I can't go out with a wig or without one.  I hate when people look at me.  I hate to see myself in the mirror.  I hate the way I look.  I hate the pain that I get in my legs and the numbness in my hands.  I hate that I can't think right and that I'm always fucking tired.  Last night I slept 12 fucking hours!  9pm to 9am!  And I could have stayed in bed longer. 

The only reason I got out of bed was because of kickboxing.  And the only reason I went and didn't cancel is because a friend was going for the first time and she planned this day 3 weeks ago.  Otherwise?  I could have been in bed all day.  And I would have been okay with that. 

I don't know anymore.  I wish I could run away.  I hate being like this.  I hate feeling this miserable.  I just don't know how to be any other way right now.  And I don't know how to get myself out of it. 

Relief Fund

I'm still so shocked that so many from my home town were injured so severely in the horrible explosions on Monday.  I can't even imagine the financial costs that will be associated with their recovery for years to come. 

Please click on this photo for more details for the fund set up by the Elks at StonehamBank for donations to be made. 

Boston

Yesterday afternoon, after the elite runners finished and coverage of the marathon was over, I shut off the TV and took a nap. Jim called me just after 3pm, waking me up, to tell me the news. When he said there was an explosion, I never imagined it was as bad as it was.

Then I turned on the TV.

I'm just in shock. I still can't wrap my head around this. So many different emotions are going through my head.

First, my friends and family who were in town or running are okay. I was all over Facebook checking to make sure. I'm grateful for the people who checked in on me to make sure I was home yesterday. I had wanted to go in, but didn't try to hard to find anyone to go in with me. I'm glad no one asked me to go.

The Boston Marathon has 3 starting waves with about 9,000 people in each wave. Runners are sorted by their expected time to complete the race, fastest runners first. Within each wave, there are 9 corrals. Bib numbers include the starting wave and corral information. Two years ago, I was in wave 3, corral 7.

Originally when I was training my goal was to finish in under 4 1/2 hours. With my injury (when I couldn't walk without a limp 3 weeks before the marathon), I threw out all expectations of time and just wanted to cross the finish line. I remember telling people, "I don't care if it takes me until 10pm, I'm going to make my way to Boston and get across that finish line." That's all I wanted to do.

The time on the clock when the first explosion went off was at 4:09. That was the time of the first wave, which included the elite runners. Wave 2 started 20 minutes later and wave 3 was another 20 minutes back, about 3 hours and 30 minutes. And wave 3 is where most of the "invitational runners" are placed.

The Invitational Runners are like me. Those who didn't qualify for Boston. We got in my fundraising. I ran on Team Eye and Ear and thanks to so many wonderful people, I raised over $7100 for Mass. Eye and Ear. I met someone on Monday night at the food store who was on this year's Team Eye and Ear. I keep thinking of her and how different her experience was from mine two years ago.

When she was in line at the register in front of me, I told her, "Make sure you put your name in big letters on the front of your running shirt. Hearing 'GO JULIE!' for 26 miles was what got me through some parts." It it really was. The crowds in Boston are amazing! I had tears in my eyes when I passed Wellesley College. The screams were louder than I had expected from everything I heard about it. I really did hear them long before I saw them.

This women in front me, she would have experienced so much of the route. But leaving in Wave 3 as an invitational runner? Most of them are not in the 3 1/2 hour finishing time. Most likely she didn't get to experience that moment with her arms raised up in triumph as she crossed that iconic finish line. She didn't get that moment. All of her memories from this incredible, amazing, wonderful experience will forever be haunted by the evil of yesterday.

This is all just so sad.

Then I heard more news. I knew the last name, and knew my brother knew him. He made it through surgery yesterday at Mass General and had already lost a leg due. Last I read on Facebook about him was a post on the Elks site.
He is still in critical condition. He was due to go into surgery this morning to try and save his left leg and they had to cancel it because they found pieces of metal around his heart

He was in town to see a friend in the marathon. He was there with 2 other friends of his, brothers, who my brother also knows. They are at Beth Israel and they both also lost legs.
http://www.bostonglobe.com/metro/2013/04/15/mother-nightmare-two-sons-two-lost-limbs/67hOUjic1trR7AkX6kZZsI/story.html

As I am writing this, 24 hours ago right now those bombs went off. Killing 3, injuring over 170. Changing lives. Changing Boston. Changing memories. Stealing hopes, triumphs and joy.

Yesterday was a sad day.

I pray for the families and friends of everyone injured.

** And wanted to add in:

A charity account has been set up at TD Bank for JP Norden, Paul Norden and Marc Fucarile. Stoneham Mass ELKS critically injured during the Boston Marathon.
Donations can be mailed or dropped off at any TD Bank location.
The name on the account is "Marc, JP, and Paul Marathon Victim Fund". The account number is 8371871647. Donations can be mailed to TD Bank 280 Montvale Ave. Woburn MA 01801. Or you can call 781-376-0100.

I Want to Run Away

Since Friday, this is the third time I have started writing.  The other two times I was stopped mid way for some reason.  By the time I got back, things have since changed again.  So, here I am, starting my 3rd post in 4 days. 

Friday I was angry but trying to get past the email.  Yesterday I was trying harder to be positive and let the anger go. 

Today?  I'm just disappointed.  In myself. 

I had worked really hard to get past what happened a month ago.  I've been fighting to stay positive and to be in a positive place.  I've been working to let go of anger and hurt.  The email last week got to me.  A lot.

I'm disappointed that I let the email get to me.  I'm disappointed that I gave away my power and allowed someone else to have such an impact on me. 

Yesterday afternoon, everything just hit me.  I went into this rough spiral that I can't shake.  Even now.  I don't like being like this.  But I don't know how to get out of it. 

I just want to be happy again. Because right now I'm not. 

It hurts so much when I feel so attacked by people.  Am I that horrible of a person that someone would go out of their way to send an email to me plus 9 others, to point out everything that she thinks I did wrong?  When I wrote about how I feel?  Does someone hate me that much that she would make that much of an effort to copy and paste parts of this blog to include as points of what I am wrong about?  When I was already in bad place.  Why?  Why would someone make such an effort to cut me down so much more than where I already was? 

The side effects of Taxol aren't great. The neuropathy hit in my hands and feet. I think its up to my knees but it could be a different side effect, "muscle and joint pain and weakness". I feel like I have shin splints in my feet, in my knees and everywhere in between. Sometimes it hurts to walk. I've needed to take Vicodin a few times when the pain got really bad. Unfortunately, it didn't make much difference.

Then I look in the mirror.  I hate what I see.  Sometimes I'll actually forget.  I'll forget that I don't have hair, that I've gained weight.  That I look like a sick person.  Then I'll be somewhere and happen to catch my reflection.  It sucks.  That moment just sucks so much.  That and when I catch people staring at me.  Because I have cancer, and that's all they see. 

I know Jim likes to be able to forget about it.  That's why he likes the wigs.  But they can be hot and uncomfortable.  I've found ways to make them better... with a paper towel under the wig.  That keeps it from scratching my head as much.  But I get so damn hot!  I am still getting hot flashes.  And with a wig on my head?  I have sweat pouring off of me and feel like I'm going to pass out. 

But I try now and again to put on a wig.  So Jim can forget.  So he can see me without seeing someone who is sick.  So he can escape this nightmare that is my life.  I know he's not happy.  I know all of this is weighing on him.  I know all of it can be too much for him at times. 

I try to give him a break and I try to back off.  He needs his own space.  I'm glad he has his cars to work on, the gym to go to, and his home gym downstairs to workout in.  I'm glad he has so many things that he can do and can focus on, besides me and besides cancer.

Before this, I didn't love what I was doing for work. What am I going to do after this? After I'm done with treatment and off disability? I'm not sure how I will be going back work.  I don't know if I will mentally be able to handle it, with the effects of the fatigue and chemo brain.  How will it be when I have to go back to work?  Can I do that?  Will I be miserable? 

With all of this.... cancer, people trying hard tell me everything I do wrong, realizing how some people really feel about me, looking like a sick person who is fat and bald, having pain in my legs, worried about working again, and then knowing that my boyfriend who I love so much is not happy... it adds up. 

A month ago, when I first realized I wasn't in a good place, that's when I tried to reach out to some friends.  That's when it got worse.  That's when I got the first email telling me that I only communicate when I want something.  Then the 2nd one.  I was devastated.  Crushed.  Sobbing for days. 

I've been trying so hard to put all of that past me.  I was glad that my doctors said I could start exercising again.  That gave me SOMETHING.  It let me have something in my life that wasn't cancer.  The other stuff was there, but I had something to let me try to get back some of my self esteem, since I had completely lost all of it.  All of it. 

Then I got the email last week.  All the time and effort involved to tell me how wrong I am for how I feel.  It took away anything I started to get back. 

And this is marathon Monday.  I was there 2 years ago.  I keep thinking of the past 2 years and looked at some pictures from 2 years ago.  My hair was so long then. The ponytail over my shoulder was to the bottom of my ribs.  And now I'm bald.

Granted I was training and running, but DAMN was I thin then.  After I stopped training like that, my body settled about 10 pounds higher.  I would have preferred 5 pounds, but was okay with the weight I was at.  Now?  Add on another 20 pounds.  Two years ago on Marathon Monday, I was 30 pounds less than I am right now.  Now, I am fat. 

Yes, I am overweight.  Pushing towards obese.  In October, my BMI was in the "normal weight" range.  Now?  My BMI is 28.  "Overweight" is 25-29.9.  If I gain 11 pounds (and they doubled my steroids last week, after I have gained 20 pounds in 6 months), my BMI would be at 30.  That is "Obese".  I am 11 pounds from being obese.  Wonderful. 

The email last week brought all of this back to me.  All of it. I was going a few days without crying.  Not anymore.   Now its a plus if I only cry once a day. 

I just don't know what to do to find happiness again.  I just want to be happy.  I don't know how to do that anymore. 

And worse, how I am feeling, how miserable I am, it is impacting other people.  I'm making Jim miserable.  I'm bringing him down.  I know he's not happy.  And other people go out of their way, take their time and so much effort to tell me how wrong I am.  My legs hurt all the time.  Really, what's the point now?  What is the point. 

Last night I told Jim that I know it isn't fair what I put on him, and I know that he isn't happy anymore.  I can't do this to him anymore.  I don't have the money to move right now, but already started to look for a new place to live.  I can't put this on him anymore.  I need to just let him go and move on without me.  I need to let him be happy and that is not going to happen if he's with me.  He deserves more than this and he deserves better than this.  I can't be a burden to him anymore.  I love him too much to continue to put him through this. 

I know I need help to get me out of this.  I know I need to find happiness for myself again, in myself.  I'm grateful that I'm seeing my social worker again this Wednesday.  I'm hoping that helps.  Something has to give. 

The last time I tried to reach out for friends by asking for help, that's when things got even worse.  I can't set myself up for that again.  I can't handle another kick in the face.  I just can't do it. 

I know I'm depressed.  And it sucks.  And I can't find my way out right now.  I don't know how. 

I wish I could just run away from everything.  I wish there was a way to just get away from everything I'm feeling. 

Sometimes I just want to give up.  Why keep going through this all?  Why keep doing chemo?  Why take the drugs that mess with my head and my body?  Why start radiation which is going to burn me?  What is the point?  Its not worth it.  It would be easier to just give up. 

Last night I was thinking about that.  If people think I'm just a horrible person, if I feel like crap, if my boyfriend isn't happy being with me, if I'm going to be miserable when I finally go back to a job I don't love... what's the point? 

But I don't know how to just give up on myself that much.  If I was, God knows I have the drugs here.  But I'm not.  I'm just miserable, depressed and in this awful downward spiral I can't get myself out of.

I know I can't rely on others to make me happy.  I know others can't get me out of this.  I have to find it in myself.  I have to find some way to be happy with myself, for me.  Not from anyone else.  Just within me. 

Right now I just don't have the strength for it and I don't know how. 

I don't think I've been this down since November.  Last month's emails and the one from last week just brought me so far back and so far down.  And I HATE that I let that happen.  I HATE that I get other people have that much influence on me and my self worth.   I hate that I let people close enough to hurt me like that, and that I LET them hurt me like that. 

I wish I was stronger.  I wish I didn't care.  Funny thing is, I thought I didn't.  I thought I didn't care what other people thought.  Guess I was really wrong on that one, especially now.  I care what people think when they see me.  I care that I look sick and that is what they see when they look at me.

I care that people I thought were my friends would spend time drafting long emails to tell me about all the things I do, think and feel that are wrong.  That they feel so passionately about it, about how wrong I am, to spend that much time putting together emails to tell me all about it, when they know how hurt and depressed I am.  And that makes me think even more, and cuts even more.  If more than one person feels so strongly and so passionately that they would spend time drafting lengthy emails, one cc'd to 9 others, to tell all the things I feel that wrong..... am I that horrible person that they think I am?  That they spend so much time telling me about when I am already a mess?

So again, what's the point?  Why keep going with the treatment?  For what life?  A job I don't love. People I think are my friends who think I'm wrong about everything I think and that I'm horrible to them. A boyfriend who isn't happy being with me.  Yeah, that's a life worth fighting for. 

I wish I could start over, pick a new life to live.  This one hurts too much. 

New Drug, New Side Effects, New Email.

I've had so many people check in with me because I haven't written in a week.  It was so nice to hear from people like that.  Thank you! 

Last week was a little on the busy side.  I tried to do what I could, then I'd come home and just CRASH.  The fatigue has been building a bit, which is a little overwhelming.  I don't remember the last day I didn't take a nap. 

This week was chemo again.  I finished up the first four treatments that were AC, and the last 4 will all be Taxol.  Whole different set of side effects.  First, the pre-meds knocked me out. 

My poor friend Karla drove down from NH on Monday.  It was great to see her and catch up.  (Took my nap before she got here.)  We went out for dinner, then on Tuesday she took me to chemo.  They changed my pre-meds, and yup, I was out.  The Taxol drip was slower and it took 3 hours for it.  I slept the entire time!  I felt so bad!  She drove all the way down to take me and I just could NOT keep my eyes open. 

We stopped for ice cream on the way home, since it was SO nice out, and she hung out here for a while to let the traffic pass before she left.  I didn't even have the energy to get up off the sofa when she left.  Jim walked her out and helped her get her stuff to her car.  I never moved off the sofa until I went to bed. 

Wednesday morning I was up for under an hour before I was back to sleep.  I was okay during most of the day.  Bursts of energy here and there, then I'd be laying down again. 

Then the side effects started to hit a bit. This time they are scaring me a little. 

My hands hurt.  A lot.  Even right now, typing, I can feel the pain.  When I woke up this morning, my hands were numb.  Making a fist hurts, especially on my index finger.  Its called peripheral neuropathy, which is numbness and tingling of the hands and feet.  Per my oncologist, it can get extremely painful as in Oxy is prescribed for the pain.  Wonderful. 

So up until now, I have had very minimal side effects.  Now?  Not so sure.  I can feel it a bit in my feet too.  It just scares me a bit, that's all.  I've been so lucky with not having strong side effects other than fatigue and chemo brain.  I don't want to add more to it now. 

Last night I got another email.  And again, it left me in tears.  This time it was sent to me plus 9 others "for transparency".  I thought my 20 year high school reunion was last year, but I could be wrong because the drama of it felt like it was high school. 

I'm still trying to put it past me.  I'm trying hard to let it go.  I know I need to be in a better frame of mind to get through the next several months of my treatments.  I've been trying so hard to focus on that. 

Getting more physical exercise in my life has helped SO much.  I love being back at kickboxing even though I'm not going today because of how much my hands are hurting me.  My Monday classes at the YMCA are so much fun too.  And thanks to Marissa, I have other free classes at a different gym that I should hopefully be able to start taking next week.  I'm really looking forward to that. 

Doing something physical has made a big difference.  I can feel it and I can tell in my personality as well.  I'm glad my doctors have given me a green light to be more physical, even though I know I have to take it easy, make modifications and watch myself.  Even still, it has made a big difference for me. 

This blog has also made a big difference for it.  It is a way for me to make sense of what is going on in my head.  I've heard others going through treatment say that they feel like they are manic depressive.  The highs are high and the lows are crushing and they change moment to moment.  Yup, I understand that.  I need a way to sort out all the feelings I have spinning and spinning around in my head.  Writing here helps that. 

One thing I find so surprising is how differently words can be read.  Two people can read the exact same thing, yet they read opposite meaning.  And typically, I hear from one who reads it exactly as I am thinking and meaning.  Then I hear from someone else who is offended or angered by what I wrote. 

That's something else I'm trying to learn to let go.  Like I said, this blog is for me to clear MY head and to make sense of MY feelings.  No one has to read this, so I'm not accepting anything for anyone being offended or angered by what I write.  I'm not forcing anyone to read this.  If you don't like what's here, that's fine. 

But my feelings are my feelings.  No right or wrong.   Its just how I am feeling. 

Last night I was so hurt and so upset.  It brought back everything from when I got those emails before.  Everything I thought I was getting over.  Guess not.  But one good thing, it really made me see things a bit more clearly.  To put 9 others into the email?  Really?  For those in that email who read this, I'm sorry you had to be dragged into drama. 

Even here... I have done my best to keep names out and to keep it so others would not know who I was writing about.  I don't know who knows what out of that group.  Originally, I wrote here because I needed to get it out of my head.  And then others told me that they heard about it.  Not sure who heard what from who, but I can't worry about that.  I talked to two friends about it, and about how I felt.  And I didn't want either of them to feel like they were in the middle of anything.  I never mentioned names to anyone else. 

My mail just came today.   Talk about great timing.  M, thank you for the great card.  She wrote that she hopes "that only kind and caring people are around me".  I needed that today, so thank you.  Thank you so much. 

I really am grateful for so much.  Up until this point, I haven't had much for side effects.  I haven't been sick once!  I live in an area with incredible services available and I'm being treated at one of the top cancer hospitals in the world. 

The people at Dana Farber are amazing.  I have never felt like a number.  All the doctors take their time with me and answer all of my questions.  Even Debbie in Patient Resources waved hello on Tuesday as Karla and me were walking to the elevator for my chemo treatment.  She yelled out from her office, "Hi Julie and hi Julie's Friend!"  They are ALL like that every time I am at that building. 

I receive emails, texts, cards, facebook messages, calls... at least something every single day from someone who is giving me support.  It means the absolute world to me and THAT is what helps me get through this.  I honestly do not know if I could get through all of this without the support I have had.  Your encouragement means everything to me.  Everything. 

I cannot say thank you enough and the words thank you just seem so small for how I feel.  The gratitude I have for the support it so overwhelming.  There just isn't words to express how much it means to me. 

So for now, I am going to do my best to try to focus only on that.  I can't focus on anything negative.  I have to stay as positive as I can to get through the next several months of this.  I'm half way through chemo.  And then there is more, and more.  I need to be in the best possible frame of mind to get through each step of this. 

Right now I want to try to figure out how to let go.  Let go of hurt and anger.  Let go of disappointment, fear, anxiety.  And to let go of people who were in my life.  I know there are things I will never forget, hurts I will never forget, but I have to figure out a way to let it go.  I'm not at a place where I can forgive right now.  I'm just not there.  But for me, I have to let go and release it.

Last week I was talking to a new friend who was diagnosed about 5 or 6 years ago.  She's doing great now.  She said that there are just people that she could no longer have in her life.  While going through treatment, she realized that her life was more important than the drama and the hurt that was brought to her.  She couldn't do it anymore and just had to cut out several relationships from her life.   And many for her were family, which sucks even more. 

But that's where I am at.  Through this whole thing, I've learned some lessons I didn't know I needed to learn.  I have realized that some people and some relationships meant more to me and were more important to me than the other people I was in that relationship with. 

I've always worn my heart on my sleeve and I would never have changed that, even still.  Yes, it can make me more exposed and can leave me hurt more often, but my emotions are out there, intense and real.  I don't hide who I am.  I put my heart on the line.  I've been stomped on many times in my life, but those hurts have become part of who I am today. 

I wouldn't change who I am now.  Yes, I lost SO much self esteem, I'm still worried about scars, my bald head, losing eyebrows and eyelashes, being fat and ugly.  Yes, I'm emotional wreck, crying at least 3-4 days a week (on a good week!).  But I'm dealing with a life altering illness.  So how can I not be living on an emotional roller coaster?  And I do deserve to limit who I have in my life, who can influence me or hurt me or life me up. 

I worked very hard to become the woman I am today.  I am driven, dedicated, hard working, passionate, emotional, determined, caring, loving, giving and yes, I am STRONG.  I am proud of who I have become.  I care about others.  I try to give back as much as I can.  I am thankful for so much and so many.  I love fully and completely.  I don't hold back and I give my all. 

This is me, good, bad or ugly, it is who I am.  You will either love me or hate me.  Find me either honest and real or offensive and angry.  But I am not going to apologize for who I am.  I am not going to apologize for how I feel or the emotions that I have. 

After receiving that email last night, that 9 others were part of, one of my fears was that I would lose more.  Because friends were now brought into drama they did not ask to be part of and were not a part of, I was afraid that they would pull away from me.  But I know I have some amazing friends in my life.  And I am so grateful for their friendship. 

So now I'm going to focus on managing the feelings in my hands today and hopefully this isn't too bad and doesn't get worse.  I'm going to see how the other side effects are and get my rest today.  I am going to do what is best for me and what will best help me heal and get through all of this.

For everyone who has given me support and encouragement, THANK YOU!  I really cannot thank you enough.  Every day it matters to me.  Every day it means something to me.  Every day it helps me get through this.  SO THANK YOU THANK YOU THANK YOU!!!!!

Who Wants a Ticket?

Last night as I was trying to fall asleep, I started to write out something to post on my phone.  It started after I read a quote on a new app I put on my phone.  I have 4 new ones with daily affirmations. 

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?