Tuesday, June 25, 2013

Fatigue

Yes, it has been a  since I have last written.   The fatigue I have been experiencing has been so overwhelming.  The only reason I am writing now is because my new Kindle that Jim won has Swype typing on it.  Right now I am laying in bed.  It it's almost 11:30am.

Radiation started a week ago yesterday  Even before that I has realized that being out for 2-3 hours, a couple if days in a row is too much for me.  I would get home and nap.  Now I do that every day.  After sleeping 11 hours Sunday night, I had radiation yesterday then met with my friend Lauren, the photographer,to do more pictures.  I was out of the house, door to door, for under 5 hours.  I came home and took a two hour nap!  I was exhausted and all I did was sit around.

I haven't had the energy to do much of anything lately.  That has been so frustrating. I haven't exercised, haven't taken Rocco for a walk, haven't really done much of anything in weeks.  I miss having energy for anything, for life.  That has been really hard on me.

Even more recently, during chemo but before the fatigue was THIS bad, I have had friends say things about how I plan different things for us and if it wasn't for me planning, then things wouldn't happen.  Now I am sleeping too much to plan anything.  That sucks.

I am so grateful for my friend Debbie from work.  She plans when we meet for lunch every week or two. Hound isn't the right word, but she makes sure it happens.

My friend Melissa is the same way.  We typically get together every 2-3 weeks purely because of her persistence in planning.  I appreciate it so much.  I always have a great time when we get together. It wouldn't happen if it wasn't for Melissa.

Other than Jim and doctors, I see Debbie and Melissa more than anyone else.  I don't have the energy to plan anymore.   I know people are busy, but it's hard feeling left out if things I was once a part of or seeing things friends do from Facebook, that I am no longer included in.

I felt for a while that there were some friendships I have been chasing down.  I don't have the energy or desire to chase anyone anymore. My phone number hasn't changed.  My email hasn't changed.  My address hasn't changed. If anyone wanted to connect or connect with me, that person would know how.

There have been people I have thought about, friends who I would love to see again or talk to, but it has gotten depressing when the only contact is as response, nothing more.  The more fatigued I am, the harder it is for me to reach out.  This is when I need the contact more and more, but I have gotten it less and less.

Sometimes I think about running away.  Once I'm done with treatment, just running away, starting completely over.  Making  fresh start and a new life somewhere new with new people and new everything.

I'm tired of being tired.  This level of fatigue isn't something more sleep or rest will fix. This is chemo fatigue that can and most likely last another few months or even longer. This is my life now.

I am so so grateful for everyone who has been there for me.  More than words can say. I guess it's sad that the loss of people in my life, especially from those who I thought would be here the most, is something very common.  All the cancer forums I am on, that's a common theme, the MIA friends and lost friendships.

I guess some people just  handle cancer.  Some people can't handle the emotional roller coaster cancer brings. Some people are "good times" friends but don't want in when the going gets too tough. Some people might  think it's too much work or effort to to someone who right now has so little to give back.  Some people might not be strong enough to deal with the reality that she could be the next one with cancer.

I don't know the reasons for the MIA friends.  I just know how grateful that I am for the friends who have stuck around and who have put in the effort.

There are  no words to express how much you, your support, your effort, persistence, and your friendship mean to me.
Thank you.

Thursday, June 6, 2013

The End is in Sight (but another beginning?)

This week has been better than the meltdown I had on Saturday.  I'm still trying to adjust to my new normal, even with treatment starting up again soon.  It can be overwhelming at times thinking about it all and processing it all.

Monday I had my appointment with the radiation oncologist.  She is so down to earth and I really like her.  It was still a bit challenging for me to get through the day.  Jim met me for the appointment and was there while I met with the doctor to go over everything.  She reviewed the risks and side effects of radiation with me and how it will work. 

After meeting with her, I went in for another scan.  They needed to line me up to the machine and see how things will need to be lined up for all of the 28 treatments.  Margo who walked me through it all was great, almost TOO chipper even.  Think Katie Couric kind of chipper.  But I guess that's a good thing.  Her job is getting people who have cancer set up for radiation.  So yeah, it fits. 

I didn't know how the scan would go and once I was on the table laying down, I couldn't tell what the scan machine was like.  She had me go back and forth real quick so I could see out the other side.  Not like an MRI so that was okay, but it still got my anxiety up a little. 

After the scans, which Margo did try to help me with any anxiety, she had to tattoo me.  :(  I haven't been looking forward to that part.  But they are smaller than I had expected.  Four little dots that really do look like freckles.  When I showed Jim that night, he said he would have just thought they were freckles if I didn't tell him.  The thing is though, I know that they aren't freckles and they will be on my body forever now, unless I get them removed. 

My radiation oncologist wanted me to have 50-70cc's of saline removed from my left breast to not cause any skin damage to that side as the radiation is projected over from my left to right.  On Tuesday I had my appointment with my plastic surgeon for the final adjustments before radiation begins. 

After going through radiation, I will have skin damage and burns.  My skin will no longer stretch if any size adjustments need to be made before I swap my expanders out for implants.  All the size changes need to be done now, before radiation.  And per my radiation oncologist, NO changes are allowed at this point forward until radiation is done. 


At my last appointment a month ago, my plastic surgeon put in 60 cc's on my right side only.  I was already uncomfortable being lopsided then.  Now?  After seeing her on Tuesday?  She wanted to make sure my right side was good to go and stretched, so she added another 40 cc's to that side.  BUT per my radiation oncologist, she had to remove (aka "deflate") my left side by 50-70cc's.  She took out 50 on my left. 

Now, my left is 150 cc's smaller than my right.  It is a HUGE difference!  It is going to be hard to adjust to.  I am going to have to figure something out for when I'm wearing a bathing suit!  :(  Not happy with that.  I was already insecure enough without now having VERY lopsided boobs. 

After my appointment with the plastic surgeon on Tuesday, I headed back to see Margo and have one more scan.  They needed to make sure the changes the plastic surgeon made will have me lined up and good to go when radiation starts.  As far as I know, things are good.  At least I haven't gotten any calls yet telling me otherwise. 

A week from Friday, on the 14th, I head back to radiation.  They will do a final set up and have me in the machine for a bit, getting me lined up and all that.  They will set the radiation machine to be ready for my treatments.  The treatments start on Monday, June 17th. 

Before I left on Monday, they printed out my schedule for me.  I have every single treatment printed out.  Almost all of them are at 1pm.  A couple are at 12:45.  Then the week I am on vacation down the cape (still need radiation!) Monday, Tuesday and Wednesday my appointments are at 7:45.  Thursday they are closed.  Friday my appointment is at 7:30.  I'll have to leave the Cape, give myself about 90 minutes to get there, where I will be for about 20 minutes or so, then another under 90 minutes to get back to the Cape.  But doing that, I should be back at the cottage each day around 9:30am. 

It kind of works out a little bit too.  I'll need someone to feed the cats for me while I'm gone.  If I'm coming home almost every morning, that is 4 other times I won't need anyone to feed them for me.  I will just need someone to feed them every night, Sunday-Saturday, then on Thursday and Saturday mornings.  I don't know yet who I can ask to do that for me, someone local.  I have to ask Jim about it too, before I give a house key out.  But then, by stopping at the house to feed them those 4 mornings, I will have to give myself another 45 minutes when I leave the Cape to get to the house, feed them, then the 15-20 minute drive back to Dana Farber. 

Jim has needed my car yesterday and today, so I haven't been able to go anywhere.  I did get out and take Rocco for a walk yesterday and I'm hoping I have the energy to do it again today. 

I still have so much on mind about finishing treatment, where I go from here with my career and any other changes I want to make with my life.  Also, I need to think about what I want to do for preventative measures for ovarian cancer as well.  I need to start looking up all of that and that scares me. 

Next week I am going to an event in Boston with BrightPink.org.  It is about women under 40 who are at high risk for breast and ovarian cancers.  I started thinking about the BRCA-2 mutation that I have.  I can't say for sure what part of my family it came from, but it is somewhere on my dad's side, since my mom was negative for it. 

Then I started thinking about the cancer family tree I had to do when I was tested for the BRCA gene.  Although none of my dad's cousin's have tested positive for the BRCA mutation, I am fairly positive it came from my grandmother's side. 

A cousin who was tested for the gene over 10 years ago (tested negative), did this tree, which is what I used.  It goes back 3 generations, which is what I was supposed to do, but 3 generations for her was 4 for me.  So my great-great-grandmother, Rose, who died of breast cancer.  She was married 3 times, my great-great-grandfather was the third, and my great grandmother was one of her last children.  With all of the children she had from each husband she had 11 kids.  Two of her daughters had breast cancer.  From Rose's grandchildren (outside of my great-grandmother side), she had a grandson with cancer and 3 granddaughters with breast cancer.  One was in her 50's, another was 38 when she died.  My age.  Rose's 3rd husband, my great-great-grandfather, also died of bowel cancer. 

Then it's to my great-grandmother, Lucy, who I remember well.  My Nana Lucy!  I was her oldest great-grandchild, her #1.  :)  Her husband, Paul, my great-grandfather, had cancer as well, stomach or bowel cancer.  They had 7 kids, including my grandmother, Mary.  One I'm not sure of, I can't even remember her name.  She left the family long before I was born.  I don't know if my dad ever met her. 

So, with my grandmother and her 5 other brother's and sister's, Paul was killed when he was young, at 9 years old.  One of her sisters had breast cancer and 2 of her daughters had breast cancer in their late 40's (although one tested negative for the gene).  One brother had bladder cancer.  Another brother died of prostate cancer at 47.  His daughter died of ovarian cancer at 40.  That's 2 years older than me. 

My cousin Louise was 2 years older than me.  Two!  When she died of ovarian cancer, what they call "the silent killer".  My the time there are symptoms, it can be too late.  She died when she was 2 years older than me. 

I remember going to visit Louise when she was sick.  I remember going upstairs to her bedroom and visiting with her as she was laying in bed and so tired.  I remember he funeral mass as well.  I was 14 years old.  When we walked into the funeral home, I was sobbing.  Her sisters were comforting me.  Even at 14, I remember feeling bad about that.  They lost a sister and they were comforting me. 

I remember that Louise knew it was coming.  She made ALL the plans for her funeral, from the music and readings that were done at mass, to the location and food served after the mass.  That was Louise, making it easier on everyone else. 

During her funeral mass, there is one thing I remember so clearly in the church.  I remember looking around and seeing a mailman at the mass, in his uniform.  I don't know if he was her mailman or a friend or what, but in my 14 year old mind, I remember thinking, "she was such a great person, even her mailman came to her funeral."

Louise was 2 years older that me when she died.  This one thought has been in my head for weeks.  I know I need to do something.  I want to schedule an appointment with a gynecological oncologist and get the ball rolling on that for my options.  I'm scared about it.  I don't want to have to go through any cancer again.  And if I do nothing, I probably will have to.  Next time I might not be so lucky. 

So the end is in sight for me with my breast cancer treatment.  July 25th is my last day of treatment!  YAY!  Almost there.  Oh one thing I forgot, I have an appointment with my plastic surgeon on July 26th, so she can add more saline to my left side the day after I'm done with radiation so I can be more even as soon as possible! 

I'm looking forward to being done with this part soon.  I'm hoping the fatigue starts to subside soon (still at 10-12 hours a day of sleep not to mention the HOURS I don't move on the sofa).  The side effects have been difficult to manage and its discouraging to not see any changes right now. 

But I'll have another beginning with what I do about my ovaries to minimize as much as possible the chance for ovarian cancer.  I never want to have to go through this again, so whatever I can do to make that happen, I'll have to do. 

Sunday, June 2, 2013

More of a Ride

Even now, even after finishing chemo, I am still on a roller coaster ride.  It isn't good days or bad days.  Its more about good moments and not so good moments.  Yesterday afternoon and last night, not so good. 

I just started getting down about things again.  And once that spiral starts, it can be really hard to stop it.  The thing I hate the most is what this whole thing has done to my self esteem and confidence.  SHATTERED it.  I am still dealing with the fatigue and haven't lost a pound.  I still have a hard time looking in the mirror.  I don't like what I see looking back at me.

Being up 20 pounds is so hard.  I feel like a fat slob.  Toss in being bald and then the 3-4 inch scars across my nipple-less chest.  I feel like a freak.  I don't like to look at me so how can I expect anyone else to be okay with it.  How can Jim?  NOT a good road for me to go down. 

When Jim left the house yesterday afternoon to pick up some parts for the car he was working on, I had myself a crazy ass pity party that paused for a bit but started up with fully gusto when I tried to go to sleep.  SOBBING a few times yesterday.  Sobbing. 

Jim has been incredible.  But this sucks for him.  If I can't look at myself in the mirror, how can he possibly be attracted to me?  How can he want this?  I know he loves me, but sometimes I wonder if he would have been happier and better off if I never moved in and put this on him.  Then I feel selfish for putting him through all of this.  Because I loved him and wanted this relationship, I moved in with him, but that wasn't fair to him.  And I doubt that decision all the time.

I don't want to lose him and I am so happy he is in my life.  He is my best friend.  I have never been more ME with anyone than I am with him.  I'm just an honest, true ME, no holding anything back at all.  He is such a great person and I would do anything for him.  Even let him go.  And I think about it too much.  Will we make it through this?  Through the rest of my treatment?  Will we be okay when radiation is over? 

He thinks things will just go back to what they were before October 29th, that I will be back to me before October 29th.  That's can't happen.  I change.  Going through breast cancer, surgery, chemo, all of this... it changed me.  And because it changed ME, it changed us and our relationship.   Just like I have a new normal, we have a new relationship.  And sometimes I wonder if this what he wants.  I hate doubting our relationship because of my own insecurities. 

Today is National Survivors Day.  I'm one of them now, a survivor.  A cancer survivor. 

Today I took a Stand Up Paddleboarding lesson with a couple of great friends, Christine and Jen.  It was so much fun, even though the wind was strong and water was choppy.  But I had a blast.  Okay so I am absolutely EXHAUSTED but I had a good time.  The sun was shining, not a cloud in the sky.  Even in the high 80's, the breeze was so nice I never got too hot.  It was a great time. 

After we stopped for lunch, I headed home and showered.  Then I hung out and relaxed for a while.  Jim and I went to the late afternoon movie where the have the best reclining seats.  It feels like your at home on the sofa, kicking back!  We had a nice time and it was fun to hang out and spend time with Jim. 

SO, for National Survivors Day, I had a great time.  I was out LIVING my life and I spent it with people I love and who I'm so happy that they are in my life. 

Today was a good day.  I think the highs much more than down times. 

Saturday, June 1, 2013

A Dog? Or a Person?

Today is off to a lazy start.  I made myself some french toast for breakfast (which Jim doesn't like) while he was out food shopping.  And after 11am, that's about it.  I have some laundry going that I need to finish up and nothing much else planned for the day.

Right now I'm just hanging out with the AC's blasting while Jim is on his laptop standing at the kitchen island doing some work. 

SO, I figured I could share some fun pictures of Rocco.  He kills me!  Sometimes I wonder if he wasn't a person in a past life or something.  He really does act like a person!


Okay, so this was in bed this morning and Jim put his head phones on Rocco.  Its a little blurry, but doesn't he look like he's just rockin' out! 



And I LOVE this one.  Jim was adjusting the head phones and I happened to get the pic as Rocco was sticking out his tongue!  Ha ha!  I have the head phones!  LOL!  




And  Rocco ended up on the sofa with me later this morning. He LOVES to watch TV.  How comfy does he look with his head resting on the recliner?