Utah?

A few days ago, a good friend of mine sent me a link to a great site.  http://breastcancerfreebies.com/
Well, I love this site!  I emailed Bethany from the site to send her information about another link I had come across, so she could add it to her site. 

Since then, I've gone through the site for different resources offered.  I started looking into grants for help with medical bills, retreats, financial help and other services available.  I already got a card in the mail from one!  I loved it! 

After going through the site, I found a few of the retreats that were interesting and I applied for a couple of them.  One is in Utah in August.  In one house, 8-10 women under 40, each gets their own bedroom and bath.  Other than travel costs, everything else for the weekend is covered.

Here's a paste from their site:
Image Reborn's Living Beyond Breast Cancer retreat program is designed and facilitated by a highly professional staff with backgrounds and experience in addressing the special concerns of women with breast cancer.
The retreats run weekend programs, and are conducted in the beautiful, peaceful mountain setting of Park City, Utah. Approximately ten guests can be accommodated at one time.
The Program includes:

• Women's Support Group offering the opportunity for participants to share experiences, kindling courage and understanding, allowing them to rediscover a sense of personal power.
• Education: Opportunity to visit in a small group setting with healthcare professionals regarding available treatment, including conventional and integrative approaches.
• Nutrition: a positive and delicious approach to food.
• Exercise: gentle movement and stretching specifically designed for women with breast cancer.
• Journaling: instruction on how to utilize journaling to enhance life.
• Massage Therapy: light professional massage for relaxation and pampering.
• Rejuvenation Time: private time to allow for rest, contemplation, or whatever each individual desires.

Well, I applied the other day and, not expecting to hear anything (since most non-profits have a bit of a turn around time on contact), I started to glace at the cost of flights for curiosity.  Not that I could afford it right now, but why not check, right?

Imagine my surprise when I heard back!  They have space and it is on a first come first serve basis, not confirmed until I send them my flight info.  OMG! 

Last night I was talking to my mom and mentioned it to her. She said she'd help me out with the flight and split it with me, counting it as an early birthday gift!  Okay, so this is going to happen now.  Hmm... okay.  So this is happening.  I'm going to a weekend retreat in August to Utah. 

I think this will be something good for me, especially since it is shortly after I will finish up radiation.  I'm pretty happy about that.  I just think it will make a big difference for me, transitioning back into what my life was before cancer. 


Overall the neuropathy has been getting a bit better.  I can still feel it now and again in my legs but more often in my hands, especially when I'm typing (like right now, when its in my right hand), or when I'm doing something on my phone. 

I'm really looking forward to when I won't have this pain anymore.  Wednesday night I was in tears.  The pain was so intense and it had been over a week already!  I had already taken a Vicodin and it hadn't made any difference.  I can't even explain how intense the pain gets.  SHOOTING AND STABBING right through me.  Just cutting right through my leg or foot or arm or finger... fingers SUCK! 

But at this point, it has started to subside.  I just can't wait for it to be done. 

I'm still sleeping 12 hours a day.  If I don't get that at night, then I make up for it in naps during the day.  My energy level comes in spurts.  When I get energy, I want to take advantage of it, but I seem to take it too far and push myself too much (story of my life!) then suffer for it.  I'm exhausted and completely wiped out after that. 

HOPEFULLY that will get better soon, even though my doctor told me to not expect any changes for months.  We'll see.

Next week I see the radiation oncologist (Monday) and then another appointment with my plastic surgeon (Tuesday).  It will be a busy and interesting couple of days.  I'm a little nervous about it.  Radiation, the next leg, will be starting soon.  I don't know what to expect.  I know it will burn my skin, like a bad sunburn, but I don't know how much damage and scarring to my skin it will do.  And that will impact how my reconstruction process goes.  One thing after another!

Now that work is straightened out and I know I have a job to go back to, and I had my benefits renewal information done for the next benefit year (July 1- June 30), I took the new costs of my benefits along with Feb on to figure out what I'll owe work.  They have been covering not only their share of my insurance premiums, but my share.  Radiation will end late July or early August.  Based on what I have heard, radiation will cause some intense fatigue that will get worse as radiation continues, even after it is over.  That said, it might take a few weeks to start to feel better. 

So, that made me think I might not get back until late August.  And owing work for insurance premium for about 7 months.  Yeah, that is close to $3000!  Nice one!

That got me going even more.  Adding in the copays I currently owe right now and through Tuesday, plus the copays for any known doctor appointments through the end of the year, my current 3 daily prescriptions (without any others that could be added in), and adding all of that to the $3000 I will owe work.... my medical expenses for June 1st through the end of the year will be approximately $4950.  WOW!  HOLY CRAP!  That's a lot of money!

With everything I've gone through, I've still been thinking about what else I want to do with my life.  What do I want to be when I grow up?  I want to take this experience and grow from it.  I want to take a leap and do something I'm passionate about.  But that means I need to get more specific about what I want to do. 

I've been thinking more and more about it and trying hard to figure it out.  I love doing the fitness thing and teaching exercise classes.  I have loved the Couch to 5K for years.  I always wanted to take that and merge it with a life coach but I didn't know how.  Well, it IS something, a Health and Wellness Coach. 

I want to help people realize their wellness goals as well as help them work towards reaching them.  Since I have gone through breast cancer, I think I want to add a bit of that into it as well. 

For all of this to happen, I need to become a certified health and wellness coach from a nationally accredited program.  I want to take nutrition classes as well, plus in addition to being certified now as a group fitness instructor, I want to become a certified personal trainer as well.

All of that takes money.  So far, the program I am most interested in costs $6000.  Yup.  More money.

And that's not including anything to do with my normal, regular, every day bills.  So yeah, I need another $11,000 to pay my medical bills for the rest of the year and to get certified to do what I want to do with the rest of my life, what I'm passionate about.

I'm still on the fence about starting a GoFundMe page.  But right now, $5000 alone is HUGE just for my medical bills for THIS year, not including the money I have already paid out.  And that seems never ending!  I'm always paying another bill. 

I mentioned it to Jim last night, especially about the $5000 medical bills.  He understands how overwhelming that part is, but his words for GoFundMe?  "I just hate that."  I get it.  Just flat out ASKING for money.  I could do it when I ran the marathon and was fundraising for Mass Eye and Ear, but that wasn't money for me.  This would be for me.  So it isn't the same. 

But its hard!  SO I haven't done it yet.  I don't know.  Its just so hard to consider, but I think it might be the only way I KNOW I can pay back work for my insurance premium, handle the rest of my medical bills, while I'm paying the rest of my bills.  And I could even, maybe, pay for a coaching program.  Pros and cons. 


So that's about it.  That's where I am at.  Still having hot flashes and not feeling wonderful that yesterday and today was about 90 degrees.  I felt SO sick last night.  It was better after Jim put in 2 AC's but even today with the AC on, the house is still over 80 degrees inside.  With no energy to begin with?  And that hot!  Nope, not doing anything! 

I'm hoping that its a good weekend, even though it will be hot and I don't have much going on.  It will be nice to spend some time with Jim and connect with him too.  He's been so busy.  But I know he will be busy again all weekend. 

SO... happy weekend! 

Over One Thousand Likes, Animals in the Attic & Lopsided Boobs

Last night I had a really hard time falling asleep.  Jim had worked on his car yesterday to change a few things I know that I know nothing about (so why even try to write it!).  The front passenger wheel is up on a jack with the tire in the back.  He was afraid someone would steel the jacks or something, so he wanted to sleep on the sofa in the living room so he could hear out the window if something was going on. 

Without him next to me in bed at night, I have a really hard time falling asleep!  So I pulled out my phone for a while and went through some emails and checked facebook. 

While I was scrolling through facebook, I started reading a story on the "Breast Cancer Awareness" facebook page. https://www.facebook.com/BreastCancerAwareness  If you look it up, it was posted yesterday, Monday, May 27th at 10pm. 

After I started reading it, I thought, "hey, this sounds familiar."  I scrolled a little further down on facebook and then I saw my picture. 

OH yeah!  I wrote on the "My Story" section on TheBreastCancerSite.com.  So I clicked on that for the full story I wrote.  http://www.thebreastcancersite.com/clickToGive/bcs/story/new-normal168?origin=BCS_FACE_BCAWARE_ADGROUP_STORY_NewNormal_052713_CTG

Just weird to see my face and my words on that page. 

Then I went back to the BreastCancerAwareness Facebook page.  I started reading the comments that people from all over wrote after reading my story.  WOW!  Talk about support! 

This morning I went back on to their page.  As of right now 20 people (including me!) shared this story on their facebook pages.  63 people have left comments after reading it.  And right  now... 1,199 people have "liked" it.  WOW.  Just blows me away. 

My only hope is that some day, some how, some way.. MAYBE what I have gone through will give another woman who has to go through this a little tiny bit of help on her own journey.  Maybe she won't feel so alone.  Maybe something I say will help her.  Maybe.  Maybe I won't be going through this just so I have to go through this.  Maybe something greater will come out of it.  Maybe. 


So, like I said, I was having a really really hard time falling asleep last night.  At one point, Jim could hear me tossing around from the living room!  He asked if I was okay.  I told him I was WIDE awake and hadn't fallen asleep at all... this was close to 1:30am.  Wonderful. 

I got up to go to the bathroom, using the softer fan light in there.  After I came out, and about when I was in front of the refrigerator, I heard something.  Sounded like small animals running around.  My cats are on the first floor of the house.  This was coming from ABOVE me.  Um, that would be the attic! 

At first I thought I was crazy and hearing things, but no.  Jim heard it too.  And by small animals, I don't mean mice, I mean around the same size of my cats who are 13 & 17 pounds!  Like raccoons or something in that awake at 1:30am, give or take 15 pounds size.  JOY!  AND I WAS HAVING TROUBLE FALLING ASLEEP BEFORE?????

The sound quickly stopped.  I got the broom out and not sure what I thought it would do, but I starting banging the end on the ceiling, moving from room to room between all the rooms that are under the attic... kitchen, living room, bedroom and hallway.  Nothing.  No other sounds.  Yup, wide awake. 

I put on my flip flops and told Jim that even if he thought it was stupid, I need to go down and check on the cats.  If something that big was in the attic, it was IN the house.  Just because the cats were 2 floors down didn't mean anything to me. I needed to make sure they were safe. 

When I got down there, they were all happy to see me and just wanted to play.  After a few minutes of hanging with them (again, 1:30am!), I headed back upstairs.  Still, no other attic sounds.  But I was FREAKED OUT!

The wonderful closet that Jim built me... guess what's in there?  The door to the friggin attic!  And guess what is over the door?  Two over the door clothes hooks.  With one being HUGE and thick, it was impossible to close that door tightly.  Nice, huh?  Animals loose, running around the attic and the damn door is open from my friggin clothes hooks!

Right now, the big think one is on the bedroom door, dressing basically blocking the entry into the bedroom.  A shelf I have in my closet now has the smaller hook sticking into the top shelf, with fleece type jackets blocking any movement in that closet it sticks out so far. 
BUT THE ATTIC DOOR IS CLOSED TIGHT AND LOCKED!!

After we both went to bed again, me in bed and Jim on the sofa, my whole body was tense.  Any sound at all, even distant traffic (and we live in a city!) would have my ears perk up a little bit more.  Jim told me to just relax and go to sleep.  HA HA HA!  Easier said than done! 

I was up in the attic yesterday too!  I was looking for something in one of the little plastic bins that I have up there and I moved my old AC unit closer to the top of the stairs so its easier for Jim to get it down in the next day or 2 (going to hit 90 for a few days starting on Thursday.  I NEED those AC's down and in the windows by then if I'm home all day!)

What is whatever was up there, was there when I was? What if it was just sleeping in a corner or something???? OMG!  I would have screamed like a little girl!  About a year ago, when I was getting a spoon out of the drawer in the morning for cereal and a 2 or 3 inch mouse crawled out along the edge of the drawer?  HOLY SHIT!  I jumped backwards, dropped the spoon, and SCREAMED!  More like a crazy high pitched terrified screech!  That was a 2-3 inch tiny mouse!  If I saw something bigger in the attic?  OH MY GOD!  HELL NO!

So yeah, I'm freaked out still.  NOT going back up in the attic alone EVER.  I've been up there at night too!  URGH!  WTF!

So that was my night last night.  Somehow I managed to fall asleep after all that and got up around 8:30 this morning.  Jim has been working from home all morning, and then he'll put the tire back on his car and do all the work on the drivers side front wheel that needs to be done, so he can get his car re-inspected. 

His car failed inspection in April.  He had 60 days to get the work done and bring it back to be in-inspected.  Basically, by Saturday.  The dealership quoted him close to $3500 in work to have it pass.  He said I don't think so and spent under $700 on the parts and tools he needed to do the work.  Of course, he waited until this weekend to start it all!  But all he has left is putting the passenger front tire back on, then doing all the work on the drivers side front tire (bushings?  maybe??  something like that anyway!)

I'm hoping before he goes to work, he'll ease my mind by taking a walk up into the attic and making sure nothing is up there!  Still make me shudder thinking if it came down while I was sleeping across the hall from my closet with the attic door!! 

I was popping Vicodin all weekend with the neuropathy pain more intense than it has ever been.  Shooting through my legs and hands.  NOT fun.  Plus I was just SO tired.  This fatigue is NUTS! 

I did find a tiny burst of energy yesterday and took Rocco for another 30 minute walk in the cemetery across the street.  We have a nice little loop that we do, then we head out the other side and walk around the block, outside of the cemetery to get back home.  He's getting better with me on the leash and for walks with each one.  My goal is to try to do 3-4 walks with him each week.  I'd love to do one every day, but I'm trying to be more realistic.  I know that won't happen.  I know some days I just won't have the energy.  But I love it when I ask him if he wants to go for a walk and he runs over to the front closet doorknob where his leash is hanging.  He gets SO excited for it! 

Lately, he's been SO good walking with me.  No more pulling on the leash at all.  Even when we see a squirrel, all I have to do is give a little dug on the leash and say "come on" and he'll start walking with me again.  Its nice to have him with me like that.  He's such a good boy! 

This week, I don't have too much going on.  Today I don't have any appointments.  IF I have any energy tonight, I might go to a fitness class for people going through cancer treatments.  But, the guy isn't exactly local.  Depending on traffic, it could take me close to 45 minutes to get there. But, its a free class and I really do want to meet the people there.  Wednesday, Thursday and Friday, the only appointments that I have are for physical therapy for my arm... range of motion and lymphedema issues. 

Next week on Monday I will see the radiation oncologist.  I should find out more then about when exactly I'll be starting radiation.  I hope I don't need to get tattoos but I'm prepping myself for it.  They tattoo people for radiation treatment.  Since each treatment is pretty quick, faster than it will take to undress and then dress again, all they have to do is line up the machine for the exact locations that the radiation needs to go.  By putting small tattoo dots on those areas, they can quickly and more easily line up the machine for each treatment 

I just don't want that reminder to stay with me forever.  I don't want that on my body forever.  We'll see.  But like I said, prepping myself that it will be happening on Monday. 

Tuesday I'll see the plastic surgeon again.  She'll make any adjustments to my expanders then to be more ready for radiation.  I have a feeling she will fill my right side again, so get it even more expanded before radiation starts.  She wants the skin to expand now as much as possible.  After I go through radiation, the treatment may leave some of my skin damaged, making reconstruction more difficult.  The skin won't be as elastic as before. 

She wants to expand it now, prepping for the damage that might come.  Six months after radiation is done (and damage has settled) she'll swap out the expanders for implants.  If I'm over extended now, bigger than I ultimately want to end up, she'll have more room and skin available to deal with any damaged skin I might have. 

I have a feeling I'll be "inflated" this time on my right side.  Then I think I'll have one more appointment, right before radiation starts.  She'll "deflate" at least my left side at that point, depending on what the radiation oncologist tells me (again, why I think I'll have tattoos done on Monday).  The plastic surgeon will need to know where specifically I'll be getting radiation and the lines that will be used to get there.  Will my left boob be in the way?   Is it too big now to have the radiation pass over it to where it needs to hit on my right?  If so, the left will need to be "deflated" so the radiation can pass over where it needs to go to get to my right side.  Wonderful.

Just in time for summer and bathing suit season, I finally have bigger boobs and they will be insanely lopsided!  I do understand no one is symmetric from one side to the other.  But at my last appointment she already added 60 cc's of saline into JUST my right side.  They are already uneven.  If she's going to add MORE to right and take out some from my left?  HELLO 

I guess from looking right at me, unless you're looking for it (at least what Jim says but I know he really would be honest with me.. TOO honest!), they don't look uneven.  But for me?  Well, I'm sitting on the recliner in the living room right now.  Wearing a tank top and bra, looking straight down with my phone pretty much where my eyes would be looking down, they are uneven.  Right is bigger.  I guess, 60 cc's bigger!  So... here's a picture of looking down at the girls.

 

 

 

Now remember... I am LAYING down.  ie.  NO GRAVITY applies anymore for me, they stand up at attention even when I'm laying down, on the recliner, under a blanket. 

And when I look down, this is what I see, the right side is bigger.  60 cc's bigger!  And I can feel the difference too.  There is more room in the expander on the left side.  Squishier I guess.  The right is more firm and has less give. 

Anyway.. here's to everyone having a good short week and the last few days of May!

So Tired!

I'm super happy to be done with chemo but I'm looking forward to when I'm done with chemo side effects.  Last night I think I slept 9 hours and today I took a few 1-2 hour naps during the day.  All I do is sleep!

Lately it seems that mid-day I get a small energy burst, which is great.  Today I took advantage of it and took Rocco for a walk.  It was misting out but that was okay.  I was exhausted when we got back after just 30 minutes, but it felt good to do SOMETHING today. 

When we got back, I hopped in the shower and since then I have been on the sofa, dozing on and off.  I've been taking my stronger dosage of Vicodin every 4 hours for the pain in my legs.  Today was pretty intense, but at least Vicodin makes a LITTLE bit of a dent so it isn't full strength pain.  Before I was taking meds, it was hard to walk.  That isn't fun. 

I was hoping that by trying to get in a little exercise, I would have more energy.  Not so much right now.  I barely had the energy to turn on my laptop today!  I sent a few text messages out but forget talking on the phone.  I just can't do it.  Too exhausting.  Pretty sad, but that's what it is right now. 

Jim has continued to be amazing.  I slept wrapped up in his arms last night.  Today he made me a salad for lunch after he got back from food shopping.  He's been doing work downstairs all afternoon, which is good for him.  I try to give him a break and space so he has his own time to do things away from and without me.  But tonight, he'll be making me dinner too.  Not sure how I got this lucky with him in my life, but I did! 

He's funny sometimes, saying he's a jerk.  I have to remind him that a jerk wouldn't have been by my side for the past 8 months.  He can try for the tough-guy image with all of his tattoos and all that, but I know the truth!  He's a good guy.  He would KILL me for saying that and completely blowing the image, but its true.  :)  He's just a really good guy.  And I know how lucky I am to have him in my life. 

Over the past 8 months, I have learned so much.  Hearing that you have cancer changes perspectives a bit.  Things that were once important no longer matter and what I didn't think about, is all that matters.  Values and relationships have changed as well.

Throughout this whole journey, my emotions have been all over the place.  Anger is common.  I am, its cancer... yeah, get angry!  You have reason!  The highs seem to be higher and the lows are lower.  Each experience is deeper and more intense. 

I have been sensitive to everything, especially on bad days.  I can't handle intense conversations and refuse to watch violent movies.  If the movie has that pit in your stomach... I won't see it.  I have to control the influences I allow around me, more importantly the stress I have around me.  And movies can be stressful. 

Last night I walked away from Jim when he started to talk about politics.  HELL NO!  I refuse to have a conversation about politics.  Agree to disagree and leave it at that.  In other words, DO NOT DISCUSS.  I just can't deal with it when I'm more exhausted than I have ever been in my life, with pain shooting through my body.  Not going there. 

That's one of the reasons I am so grateful for the people I have in my life.  After a few lessons learned this year which ended a few friendships, I am left with incredible people in my life.  I got text messages from two people today to thank me.  For the thank you cards I sent them.  They thanked me for a thank you?  :)  But these are the amazing people I have in  my life.  This is how wonderful they are. 

I know how fortunate I am to have great friends in my life.  This whole experience renewed several friendships from many years ago and I'm happy to have these wonderful women back in my life.  Their encouragement, support and kind words mean so much to me. 

At the same time, other friends have become even closer.  I have seen goodness and kindness in people that I didn't know existed.  And I am lucky to call these women friends.  Very lucky! 

With the exhaustion and fatigue that I have, it can be so hard to reply to emails and messages sometimes.  Especially longer ones for some reason.  I feel horrible that I don't have the energy to reply to people sometimes.  So when I do get a burst, I'll try to send out text messages or emails or facebook messages to people to try to connect. 

One thing that I have been doing is making more of an effort to connect with those who have made more of an effort to connect with me.  And by doing that, there are a few people I heard less from.  (and for those who are in the process of buying new homes and packing up and moving without having their first homes sold, plus with husbands and kids?  This is NOT about you!  I KNOW you don't have time to think!!  :)  I just wish I was in a better place myself so I could help you!) 

At this point, I'm really happy with the relationships I have in my life.  A year ago, I had given more value to some friendships than they deserved, seeing now in hindsight.  Those people are no longer part of my life and that's okay. 

I can't say I am at a place of forgiveness yet.  I still feel twinges when I'm reminded somehow of all that happened.  Things still bother me.  I know I will never forget what happened but I would like to be able to forgive at some point, just for myself, to completely let it go.  Of the two who sent emails that stung, one got me more angry for creating high school bullshit drama.  The other hurt more and still does.  Even now looking back and thinking of the words that I read, it still hurts. 

It still shocks me. Shocked because of what was said, who said it and that I was so wrong about how I valued that friendship.  I guess its just hard for me to feel so personally attacked by someone who I would have done anything for.  And it hurts that she thought so little of me, and that I was as wrong as I was in believing that this friendship meant as much to her as it did to me.  And that's sad. 

The other one can kiss my ass for all I care.  I think I said if she was on fire, I wouldn't piss on her to put it out.  She's nothing to me now.  I don't even know if forgiveness is the right word for this one.  I've already let this one go.  Sort of an empty nothing for her now.  But I won't put myself in a position of ever being around her.  Hopefully she won't put herself around me.  If she does?  Hmm... I guess I'll find out if I'm still angry then, huh?  LOL! 

When I'm angry, I've been told I can be scary.  Years ago someone followed me for a couple of miles to the drug store I parked at, after I passed her.  She started yelling at me when I got out of my car (didn't even know she had been following me).  I just wanted to go into the drug store and get home!  I remember telling her, "Listen, if you want to start something, then get out of your car and start something, because I have NO problem finishing it.  If not, bye-bye!" 

So yeah, I guess if she decides to show up at something I'm at, she'll find out if I'm still angry or not.  LOL! 

Right now, I'm in this weird in-between stage.  Getting over the last chemo treatment.  Another week + before I see the radiation oncologist to find out when radiation starts, which would be a week or 2 after that.  So I have 2 or 3 weeks now before the next part. 

It isn't this weird limbo like it was back in December, waiting for surgery.  It is more of a recovery and resting phase for me.  I get to not do anything for a little while, even though I couldn't do much if I even wanted to right now!

When all of the treatment is done, I will be going back to work.  That transition will be tough, to ease back into it.  I know that my job isn't my passion and I've been working on figuring out what I want to do with the rest of my life.  But right now, the program I want to take will cost about $6000.  I don't have that right now, or for a while!  So... waiting, but who knows what could happen. 

I'm optimistic about the future.  My treatment is in a good place and even though I have side effects, overall I feel good (minus pain this weekend and overall fatigue).  I'm hoping when I get a little energy back, I can start exercising again, which always makes me feel better too.  And with that, I could hopefully start to lose the 20 pounds I put on!  I miss my summer clothes that I won't be wearing this year.  Oh well. 

I have great relationships in my life and so much positive energy and support from everywhere.  I just feel really good about things right now.  Hard to imagine saying this while I'm due for another Vicodin and the pain is getting intense again, after I napped for at least 5 hours today.  And while I'm laying on the sofa, under a blanket with the heating pad on my legs to help the pain, with Rocco laying at my feet on the other side of the sofa.  Yup, things are really good right now.  LOL! 

But they are.  I'm happy.  I don't feel the stress I had before.  Maybe I'm just too damn tired for it.  I've just learned what matters to me and who and what is most important to me.  So going forward, that is where my focus will be.  On being happy and on what matters.  :) 

There are too many to mention, but I hope you all know who you are.  I am so happy, lucky and grateful to have you in my life.  Thank you for your support, encouragement, prayers and for all of the positive energy you have sent my way.  THAT is what has made an unbelievable difference to me and what has helped me get through this.  YOU did that.  (give yourself a little pat on the back!)

CHEMO IS DONE!!!!

May 21st was my last chemo treatment!  YAY!  I finished it.  :)

That was the longest and fastest four months of my entire life.  But I am so grateful to be done with that part of it. 

Tuesday my friend Jen took me to chemo.  She's so sweet!  I even got a card from her today... a congrats for finishing chemo.  Love her.  Christine popped over again at her lunch break too... she brought over a card and the cutest unicorn beanie baby.  I have it up on the shelf in our living room now. 

The nurses wrote congrats to me with little notes and they came over clapping when I was done.  It was really nice.  But as nice as they are, I'm glad I don't have to keep going back there every 2 weeks! 

Here's a picture that Jen took of me with my nurse Ashley and the sign the nurses gave me.

Doesn't Ashley look like she's 12?  :)  So sweet!! 

Now I'm managing the side effects from chemo.  My oncologist said to not expect things to change for a few months.  I will still most likely be sleeping 12 hours a day, especially once I'm a few weeks into radiation.  Wonderful. 

Now is the neuropathy from the Taxol.  This time around it started on Wednesday.  Last night it picked up a bit in intensity.  I felt it earlier during the day today, when I normally have it more at night.  Right now?  Its starting to kick up a bit.  NOT fun. 

The pain this time around has been more intense and if it keeps to as it has in the past, tomorrow night it will peak.  NOT looking forward to tomorrow night.  Two weeks ago on Saturday night I was in bed crying from the pain and that was with Vicodin.  Since it has been more intense after each treatment, I'm expecting this weekend to be tough to get through. 

BUT... this was my last chemo so after this, I won't have to deal with these side effects again!  YAY!! 

I'm still doing physical therapy a couple of times each week to help with lymphedema prevention (and the small amount of fluid I already have in my right arm) as well as trying to increase the range of motion in my right arm.  So far so good. 

Today I had a massage too.  Considering I'm not working, going through PT and having massages regularly, shouldn't the knots in my back, neck and shoulders be getting better?  Um, NO!  Luckily the massage therapist I see at Dana Farber is also one of my physical therapists... Michelle.  So the massage she gave me today (which is only $20 for patients, LOVE that part!) was great and focused on what I need with PT too.  But she knows how bad my back is... even though I was in there all relaxed today, starting it without being stressed or anything. 

When I was at Dana Farber on Wednesday for my shot and for a couple of other appointments I had there, I stopped over to say hi to Debbie at Patient Resources.  She had a blanket for me.  Someone made it and donated it.  She asked that it was given to someone special who was going through breast cancer.  Debbie put the blanket under her desk to hide it so she could save it for me.  How nice is that of her? 

It is almost weird to say this, but I'm going to miss seeing some of the people I see now, regularly, at Dana Farber, once my treatment is done.  Like Debbie.  Plus so many others too.  They are all so nice and positive and just give such incredible energy.  I'm going to miss seeing them.  They have made such a positive impact on me while I have been going through my journey.

Tuesday night after I was home from chemo, Jim and I went out for dinner.  He's not much of a card person... HATES Hallmark.  For my birthday and Christmas, I have to specifically say I want a nice, thoughtful card included.  Well when I got home on Tuesday, he had a card waiting for me.  A cute card with puppies on it, saying congrats for getting through this part.  That night he took me out to dinner to celebrate too. 

Things with him and I have been really good too.  Yeah, we've had our ups and downs over the past 8 months but things are really good now.  We got through this part of it and I really things will start to settle down more now that chemo is done.  Plus, it will be a HUGE help to us when I have energy again. 

Right now, that's about it. 

I think its time for another nap!

TWO DAYS!!!

This part of the journey is almost done.  Two days left until my last chemo treatment!  WOW!  I can't believe it.  So close. 

The past 4 months have gone by so slowly but so quickly at the same time.  Strange.  I'm still getting used to this part of things and now it will be done and I'll be on the next stage pretty quickly.  Radiation should start in a few weeks.

I'm not exactly sure what I am going to do about my hair as it starts to grow back.  Right now I have spots that have hair and spots that have nothing but smooth skin on my head.  I don't want to have patchy hair when I'm out.  Being completely bald is one thing.  Having a patchy head is another.  But I'll figure out how I'm going to live with it soon enough.

Summer is coming quickly.  This week I think the weather is going to be in the 80's a couple of days!  SO nice.  But not fun while I'm having hot flashes.  It will be tough having to be super on top of wearing sunscreen since my skin is so hyper sensitive to the sun from chemo.  It makes me want to stay inside since its so much work now!  I hate that.

But yesterday I did buy a long sleeved light weight button down shirt that has an SPF of 40.  So hopefully that will help.  I can still feel like I can be out wearing that and I'm covered without having to reapply sunscreen every 2 hours.  

A few weeks ago I started physical therapy to work on the range of motion on my right shoulder plus any signs of lymphedema.  She said I had some early signs of it, but the swelling I thought I had has already started to decrease.  I can see a bit more symmetry between my left and right arms and shoulders now, which is good.  And I'm hoping by doing this now, I will have less of a chance of developing lymphedema later.  Plus I'll have more knowledge on it and what to look for and what I feel. 

So a month or so ago, I signed up for a class at REI with my friend Jen.  It was a class I have wanted to take for a few years after hearing about it.  Intro to Road Cycling.  They teach you different things about road cycling and then you go for an easy level ride. When I looked at the calendar, I picked the class that was yesterday based on when my side effects would fall (less pain this weekend from the chemo).

So, that class was yesterday.  INTRO to Road Cycling?  EASY ride?  Um, 18 miles is easy?  First off, I haven't done any exercise in over a month and before that was a couple of classes at the Y and 2 or 3 kickboxing classes that I took it easy on.  Oh and one time at the track.  That is IT, other than walking Rocco.  18 miles?  Really?

A few times I was starting to hyperventilate.  I could feel it starting, especially as I was going up hills and trying to push it more.  My legs were toast and I was trying so hard, but I just didn't have it in me.  And pushing for it and trying... my breathing became labored and then I could feel the start of hyperventilating. 

Unfortunately, the first time it happened (on what ended up being the worst with hills, back to back) was only about 6 or 7 miles in.  I had to walk up the rest of those hills and the guide stopped us for me for a break under a tree.  Then we went another couple of miles I guess where we stopped for lunch.  At that point, someone who had a thing on his bike said we had gone 8.9 miles. 

The rest of it was tough for me.  EVERY TIME we hit a small hill, I was struggling.  I tried to keep my legs going at as much of an even pace as I could, but it wasn't easy.  They told me that the breaks were averaging every 2 miles.  Wonderful! 

I couldn't believe that it was 18 miles when we got back.  SO not what I was expecting and not what I was in shape for. 

I guess I figured that because of the shape I was in before this, it would be easy to get back into things.  And on top of that, I did NOT expect it to be an 18 mile bike ride!  After checking the REI website, it is listed as "Easy Active" and the description of that for cycling is:
Cycling: Riding in flat or rolling terrain with possible short steep hills (which can be walked), for distances of less than 15 miles. Riding pace is slow.

Less than 15 miles?  LOL!  Okay! 

And we started with 7 of us but one left pretty quickly into the bike ride.  Her knee was bothering her.  That left me, Jen and 4 others.  Three of them brought their road bikes and the forth didn't have a road bike but went mountain biking regularly.  And then Jen who is very fit and me. 

So yup, after that woman with the bad knee left, I was "that one" in the class.  But it really was supposed to be a BEGINNER class!!!  Oh well. 

My legs are killing me today and getting out of bed wasn't easy.  When we were standing and holding the bike, plus every time I stopped, stood there or got off it or was starting to ride again... I can't even remember how many times I whacked my shins on the pedals.  I have so many little cuts that are turning into bruises on my shins, plus all of the bruises on the rest of me.  Not to mention NOT having padded biking shorts! OMG my butt is killing me.  I swear the only comfortable place for me to sit in an upright position is on the toilet!  (I'm really not even kidding!  I highly expect bruises on my butt in a day or two!)

But lots of water last night and so far today, some stretching as well as using the massager on my legs every couple of hours has helped a bit. 

Not sure why I always seem to do that.  I get an idea of doing something and JUMP head first into it.  No easing into anything and building up.  Lets just go for the 18 mile bike ride, right out of the gate.  That would make sense, right?? 

What else? 

Last week Jim and I went out for dinner early on Wednesday night.  (REALLY early, we were home around 6:30!)  It was 2 years from our first date.  Jim thought I was silly for it, but I wanted to go out for dinner and do something to celebrate it.  We have been through a lot in the past two years and we're here and together.  I wanted to do something to recognize that. 

It was a really nice night and nice to get out, do something together and spend time together.  We had a nice time.  I'm glad we did it. 

Otherwise, same old same old.  Tired, sleeping 12 hours a day, pain was until Thursday night but I'm expecting it to start up again this coming Wednesday or Thursday.  Slightly nervous about this coming Saturday because that will be the peak of intensity and I have a feeling it might be rough on me. 

Chemo brain is still here.  I forget words all the time and basically have to change sentences around to use something else instead.  I have to write EVERYTHING down all the time or I'll forget.  I really hope the chemo brain side lessens soon.  I've read it can take a few months or sometimes even years for that and the fatigue to resolve (and I needed a few minutes to remember the word resolve right then... nice!)

Still slightly concerned with work.  I replied to their email Tuesday night and haven't received an answer yet.  I'm still not sure what I'm going to do.  I've done a bit of research here and there and found a few links that were interesting.  I don't know if it is legal for them to "terminate my active employment" while I am out on disability for cancer treatment.  Here is one link I found:
http://www.eeoc.gov/laws/regulations/adaaa_fact_sheet.cfm

And then this link, but specific to questions 12-20
http://www.eeoc.gov/policy/docs/fmlaada.html

Based on what my boss said to me in April, with her having August in her head for me returning, I don't think they can let me go to rehire me later. 

Right now I'm waiting for their response to my email before I do anything, but in the mean time I'm trying to figure out my options and what would be best for me going forward if they do come back and say they want to terminate me. 

Jim had a good point if I did decide to get a lawyer and sort of go after them if I'm terminated.  Say that happens and they back down and I have my job back.  When I go back to work, it is pretty much a given that they will make my life hell.  Do I want to deal with that? 

But how would being terminated impact me overall?  They would be under no obligation to rehire me when I'm done with treatment, even though it is in an email.  How would unemployment work after being on disability since January?  Switching from one to another?  And how much would unemployment pay since I haven't had any actual earning since my last date of work on January 9th? 

SO... still waiting for their answer.  Then I'll be in a better position to decide what I would need to do next.  :( 
Doesn't make managing my stress level any better though! 

One WEEK!

A week from today will be my last chemo treatment.  I'm so happy that it is so close to being done.  This whole thing has been a crazy roller coaster ride for me.  Right now I feel like I'm on one of those boring straight away transition parts of the ride.  Kind of settling what has happened, but not too sure what's next. 

Saturday was the peak of the pain from this chemo drug.  I was fighting tears that day and took more Vicodin than I have since surgery.  It woke me up around midnight when it hurt to get up and go to the kitchen for another pill to go back to sleep.  Shooting, stabbing burning pains. 

I'm nervous about Memorial Day weekend.  With chemo on Tuesdays, the pain starts up typically around Thursday with Saturday as the peak, then slowly gets better by the following Wednesday or Thursday.  Each treatment, the pain has been more intense than the last.  This one was really hard on Saturday.  I'm afraid of how back the Saturday of Memorial Day weekend will be.  Not looking forward to that day. 

Otherwise, thing have been going pretty well.  Sunday we did the mother's day thing and had dinner at his cousin's house before stopping over to see my mom.  I have a friend coming by today in a couple of hours too.  Looking forward to that.

I haven't exercised at all.  Between the pain and fatigue, it has been hard.  I can't do anything when the pain is bad and I've slept through most of the morning classes I could have gone to.  I'm looking forward to getting some energy back again.  

Jim gave up going to the gym for his MMA classes, at least for a few months.  He wants to focus more on working out with weights right now.  Losing fat, gaining more muscle.  So he's been home much more over the past week and a half.  Even though he still works all the time (nights and weekends on his laptop), I get to see him much more often and sort of connect with him more. 

That part has been really nice.  We got to go to a movie together and still go to the 99 most Friday nights.  I like having the "date night" sort of thing.  I missed that.  But things seem to be going really well right now with him and I.  I think both of us are trying to put more into "us" and do more for each other.  I've tried to wear wigs a little bit more for him, so cancer isn't right in his face (me being bald) all the time.  He can forget about it for a little while. 

And he's been trying more with me too.  He's not much of a compliment sort of guy, but he has been trying lately.  Plus little things, like the night we were at the movies, when we were going to bed, he told me that he had a great time with me that night.  Little things like that just mean so much to me. 

I'm trying to think more and more about my life after treatment.  That is hard to do.  This has been my constant.  The in-my-face-everyday for the past almost 7 months.  This has been everything.  So trying to think about my life after this?  That's hard to do. 

I know that I'm not the same person.  I know that I won't be the old me again.  Too much has changed and I have been through too much.  I lost innocence with the diagnosis.  The old me doesn't exist anymore.  I've evolved and become someone new. 

But where do I go from here?  How do I transition back to work when my days have only consisted of sleeping late, naps and leaving the house pretty much for doctor appointments only?

I still have the chemo brain thing going on.  I think it was Sunday when I was confusing the hell out of Jim by using the wrong words for things.   I think I was calling the refrigerator the dishwasher or something like that.  He had no idea what I was trying to say!  And I do that ALL the time still! 

God forbid someone interrupts me.  I'll never be able to remember what I was trying to say, important or not.  It will just be a long gone thought. 

I'm nervous about working with my mind like this, so afraid of making mistakes and having them held against me.  I get little bursts here and there of energy.  Sometimes of physical energy, sometimes of mental clarity.  Not typically both at the same time! 

Right now, I feel like my mind is actually working pretty well.  I'm on the recliner, blanket over me, and I could seriously fall asleep in under 10 minutes if I was to completely lay down.  This morning I was doing a few things around the house for the 30 minute energy burst I got.  I couldn't have said a complete sentence at the time, but I cleaned half of the bathroom. 

It's going to be weird when the hair on my head starts to grow back in everywhere.  I have some spots now that still grow, but others that are smooth to the touch.  The growing back time is going to be a hard transition for me too.  That in-between period.  Just a short boy buzz cut growing back, but growing back uneven and spotty. 

Sunday when I was in the shower and realized it had been close to 2 weeks since I used any razor on my legs, it made me think that at some point I will have to start buying razors again.  I heard the hair on my legs will start to grow back first and faster.  Wouldn't it be nice if that part lasted?   Trying to find all the little positives and not shaving has been one of the big ones!  When I know my numbers are up (lower risk of infection if I get any cuts or nicks), I'll pull out an actual razor with great shaving lotion.  Otherwise I have just used a battery operated elector razor.  The real razor is nice, to get that super close and smooth feeling for a few days before tiny scattered stubble starts to grow in. 

And here's a little bit of TMI (not like I hold back but whatever, click below if you don't want to read this part).  Bikini line?  Scattered is saying way too much.  Maybe 5-10 random hair follicles work at all.  No razor burn, no bumps... super smooth.  Why couldn't this part be during July and August when I'd be most likely to be in a bathing suit? 

I'm still unhappy about my weight and the season change hasn't been helping with that part.  I have lost any muscle definition I had before and I'm consistently up 20 pounds, 2 sizes.  Now that the weather is getting warmer, I don't have any clothes again that fit.  Toss in hot flashes and emotional meltdowns?  Yeah, getting ready is so much fun!

Sunday for Mother's Day, I was in tears trying to get ready.  Poor Jim was standing in my closet trying to pick out something for me to wear to dinner at his cousin's house.  I put on jeans first, but I was SO hot and I already told Jim that I would wear a wig for him that day, which makes me even more hot.  Out of all the skirts and skorts I had from the past few summers, I had one that was a size 10 from years ago (I gave all the other 10's and 12's away at clothes swaps with friends or donated them.  Why would I need them again, when I was a size 6???  URGH!) 

The one size 10 I have is a weird in between color that didn't match everything.  I swear I tried on at least 10 different shirts.  I think that is about when I started crying.  I told Jim I wasn't going and he could tell them I didn't feel well or something.  I had nothing to wear because I was a fat slob. 

It SUCKED! 

Eventually I found an old black short sleeved thin cotton top that worked and kept me from overheating too much.  And the wig managed to stay on the entire time, even after we got home. 

Last week I had stopped at Kohl's where I bought the other skorts I had from the past several years.   Out of every damn color, they had one in a size 10 that I didn't like.  So on the way home Sunday, we were passing a different Kohl's.  I made Jim stop there and I bought 4 of them.  At least now I'll have SOMETHING I can put on when its warm out and not feel horrible.  I have some Kohl's cash now too, so the plan is to figure out what other store I can go to since the 2 I have been to don't have any other colors in size 10. Might go online though and see what I can get (there's chemo brain... thought about that last night, but didn't write it down.  The thought was gone until now, writing about trying to find more size 10 skorts!)

So that's about it.  Still not comfortable in my skin.  Still nervous about what my future holds but trying to focus on the little positives I have in my life and go with that. 

Hmm... anything else?  OH, today Angelina Jolie released her info that she was BRCA-1 positive and had a preventative bilateral mastectomy to lower her risk of breast cancer.  Things I've read from various sites online have been mixed about it.  From "if I had a higher risk of colon cancer does that mean I should remove my colon?" to "good for her!" 

I'm more on the "Good for her" side of things.  First off, being BRCA positive, second having a bilateral mastectomy when cancer was only in one breast not two.  I think the biggest reason I am on the "good for her" side is that I'm glad she is using her position of being someone that the will make headlines to bring attention to this.  Genetic testing is a big deal. 

Although only 5-10% of the population will test BRCA positive, being positive will increase your breast cancer risks up to 87%!  That's HUGE!  If I didn't have a bilateral mastectomy, my risk of developing breast cancer in my "good" breast was 5 times more likely than someone who was not BRCA positive having a mastectomy.  Um, I don't like those odds!

I have a 37% increased risk of developing ovarian cancer with my mutation.  That is slightly increased since I have already been diagnosed with breast cancer.  I also have a higher risk of pancreatic cancer.  Men with my gene (like my dad or possibly my brother and uncles) have a 20% increased risk over the general population of prostate cancer.  And any children from someone BRCA positive have a 50% chance of having the gene.  My brother has a 50/50 shot of having this gene.  And if he does, each of his kids would have a 50/50 shot too.  That sucks! 

So yeah, I'm glad Angelina came out and released her statement that she is positive and she had preventative surgery.  Good for her.  If I knew before cancer, I'm sure I would have made the same decision.  As it is, I had a bilateral to be preventative and after I'm done with treatment I will be looking into having my ovaries removed as well.  I don't want to have to go through cancer treatment again and I want to do everything possible to make sure I never need to. 

10 More Days!

My final countdown is on.  I have 10 days until my last chemo treatment and then this part will be done.  WOW!  How crazy is that? 

The morning of my bilateral mastectomy, I remember trying to get my mind off of things before I got out of bed and I was flipping through my phone.  Someone from work had texted me a picture of her son who was maybe an hour old.  Logan was born the day of my surgery.  Yesterday I saw a new picture of him on Facebook that she posted along with a comment about him now being 4 months old.

My surgery was 4 months ago yesterday?  Really?  It has been four months?  That's even crazier than my last chemo treatment being in 10 days! 

It's strange because so much has changed when nothing has really happened in four months. 

I haven't worked.  I am pretty much home unless I have an appointment.  I haven't done anything for 4 months.  But SO much has changed.  I had short brown hair, short purple hair and now, no hair.  I have gained so much weight, lost muscle and gone up 2 sizes in my jeans.  Nothing fits now. 

The relationships I have in my life have changed so much.  Some didn't make it, others have become so much stronger.  Old friends from my past, who I had lost touch with, have been incredible to me and I am so thankful for them all.  I'm lucky to have rekindled these relationships.  One big positive that cancer brought into my life. 

I've also taken a lot of time to think about what matters to me and where I want to be in life.  I've never been able to do a 5 year plan.  Right now I can't even do a 6 month plan!  I have my last chemo in 10 days, then at some point in June I start up almost 6 weeks of radiation.  That's all I have on  my future list.

But I have learned so much about myself since October 29th.  Even without clear direction of where I want to end up, I know what is important to me.  I am not afraid to go after where I want to be or to pursue my dreams.   Things in my life will fall into place for me.  I will end up where I should be, doing what I should be doing with the people in my life who should be around me.  Things will work out as they are supposed to.

Right now I'm still struggling to get through the end of chemo.  This weekend is the worst as far as the side effects I get on Taxol.  The pain is very intense.  Sometimes it hurts walk.  I wince in pain when it shoots through me, always in my hands, feet, arms or legs.  Basically anywhere from my elbow to my fingertips, knees to my toes are all fair game.  SHOOTING pain.  I took the older, lower dose of Vicodin earlier but it didn't do anything.  That was 5-500.  I have 7.5-500 as well.  My doctor was all set to write me one more for 10-500, but I said I could just take 2 of whatever I have first.  But the pain is overwhelming at times.

I'm still insanely exhausted.  The fatigue is crazy.  12 hours a day?  Really?  After seeing the endocrinologist yesterday, my thyroid levels were normal again.  I was off because of one of the three steroids that I'm on.  Wonderful. 

Otherwise, I still have the "chemo brain", where I can't remember or understand basically ANYTHING.  Another frustrating part.  Well, all three side effects are frustrating.  Sleeping, feeling stupid and in pain.  Love it. 

I'm REALLY hoping that once chemo ends, so will all of the effects.  I know that the pain should be done first, since that peaks... well this weekend it is peaking as far as the cycles of treatment.  Then I don't know about the chemo brain and fatigue.  Those can last a while I guess. 

I can't remember if I ever gave a link or anything about chemo brain, but I read one the other day that gave some decent info from Dana Farber.  http://blog.dana-farber.org/insight/2013/01/mental-fog-chemotherapy-side-effect-is-real-and-often-treatable/
It is an actual thing, not a so-called thing. 

If you don't read the actual link for the Dana Farber blog, this is the part that is most important:
"Some scientists have adopted a more formal term – post-cancer cognitive impairment (PCCI) – to describe this group of symptoms, which include memory lapses; difficulty concentrating, planning ahead, organizing, and multitasking; and slow mental processing."

Yup, that about sums it up pretty clearly.  Slow mental processing, memory lapses and difficulty concentrating... yup! 

Before this, I used to read all the time.  LOVED books.  I'm home every day.  Have I read a book since I've been on chemo?  No.  I can't.  I can't focus long enough for it.  Even reading a magazine is challenging for me.  That's frustrating.  Not understanding things is frustrating and knowing that I can't remember or understanding things is the most frustrating. 

But, no matter how long it takes for the side effects to resolve, the end is in sight.  Disappointing to know it can take possible 9 months for the symptoms to resolve, but it could take years?  Crap!  That would suck! 

As scary as it is, I'm trying to think of the future and where I will be after treatment is done.  It is so hard to imagine going back to work, sitting at my desk and living my old life, as if none of this happened.  Hard to wrap my brain around.  One step at a time, right?

And I'm doing my best to stay as positive as I can.  Some days that is NOT easy at all.   It is so easy to feel lost and alone and drifting in this whole thing.  As much as people try, no one really gets it unless you have been there.  And it sucks that so many have been here and do understand.  When I talk with those women, I feel this connection that is hard to describe. 

I'm working on letting go more and more and trusting that I'll end up where I need to be and that things in my life will all work out.  I have always believed that and have said, I always land on my feet.  This is no different.  Whatever happens next, whatever road I am on, I know I will land on my feet and things will work out for the best.  Might take me a while to see it, but it will all work out.

In the mean time, trying to figure out finances still.  Got an email from work last week.  FMLA requires them to hold my job for 12 weeks and while I'm out during FMLA, they are required to continue to pay their share of my benefit premiums.  Well, 12 weeks is up. 

They are not required to hold any job for me at this point.  The legal-ease wording of the email was interesting, although part of it left a bitter taste in my mouth.   "We need to make a decision whether to extend your leave or terminate your active employment - with the expectation that you will be rehired when you are able to return to work. Both options have significant - but differing - implications for the Company."

Basically, they don't want to pay for my health insurance anymore.  They have paid my share for February, which I was planning on doing a payment thing when I started working again.  But now I think they just don't want to pay for any of it going forward, and then do repayments on Feb-now when I return.  So wonderful.  Add in another $600+ a month to cover my benefits while I'm out of work and sleeping 12 hours a day, unable to focus on reading anything and unable to remember conversations that I had.  Okay.  Great. 

But, like I said, I always land on my feet.  Things will work out as they should and what will be, will be.  I'm not going to try to fight with what is going to happen anymore.  One thing I learned, when dealing with cancer, you have very little control of things!  VERY little control.  Things happen, then you react.  That all you can do. 

I'll return to work when I feel I can.  When I'm not sleeping 12 hours a day.  When my legs and arms are getting shooting stabbing pains.  When I can remember a conversation I had the day before.  When I have enough focus to write a blog post without stopping and going back to it 5 times over several hours, in between naps. 

Right now, I'm not at that point.  I don't know how long the effects will take to stop.  I don't know how my body will react to radiation.  I hear it can okay but I also hear that within 2-3 weeks the fatigue can be very intense.  Everyone is different and each body responds differently. 

So now I'm going along and seeing what's next.  I'm laughing when I can and enjoying the small moments that come along the way.  That is all I can do at this point. 

Funny, I was already feeling like this, already talking about this yesterday, and today I saw a quote posted on Facebook that describes all of this perfectly for me.  I forgot for a while, but now I'm remembering again and doing what I have to do to focus on remembering this. 

Tired of being Tired

Been a week. 

I'm so tired all the time.  I sleep 12+ hours every day and I'm still tired.  Not fun.  I slept over 8 hours last night, then napped today for 1 1/2 hours so far.  I'm sure I'll nap again later but I have to get back to Dana Farber for my shot.

The normal range for White Blood Count is 3.9-11.  I've been pretty consistent at 12-13 for my first 4 chemo treatments.  I switched to Taxol for #5.  She wanted me to keep the shot for that one too.  Then I went for #6 which was 2 weeks ago.  My WBC was at 22 or 23 so she said no shot, but did expect my #'s to drop a bit.

Yesterday for the blood work?  I was 4.7. Still considered within the normal range and okay to continue with chemo (if I was 3 or lower most likely I would have had to skip chemo yesterday.)

SO, today I am going back for the shot. 

I told my oncologist how freakin tired I have been.  I thought it was just fatigue that was part of this chemo crap.  She called the lab and had them add a few additional tests for my labs.  B12, Iron, Thyroid and a few others.  I knew my B12 would be fine, I've been taking B Complex daily. 

Iron and Thyroid were low, per my nurse, but I didn't get the results until after 4:30 when I was leaving after chemo.  My oncologist was still in the building, not in her office and my nurse didn't know where she was.  SO hopefully today I'll find out more about those results.  Am I anemic now?  JOY!  But that could explain the absolute exhaustion I have had for WEEKS now. 

It is frustrating to sleep all the time and still be tired.  I'm just tired of being tired!  I have to plan around my naps.  And even then, a long day knocks me out.  Between a family party on Sunday then chemo yesterday?  I can barely keep my eyes open right now... after almost 10 hours of sleep?  That's not good!!! 

But that's where things are at with that.

13 days until my last chemo treatment.  This part will then be done.  Then its on to the next in the journey. 

Doing PT now for the month of May.  Working on range of motion on my right arm and also trying to prevent lymphedema as well, which I think I have a slight amount of.  And this is something I will be at risk for basically for the rest of my life.  Radiation will also be a risk for it as well and increase the chances of it getting worse.  So hopefully doing PT now in May, before radiation starts mid June will help minimize any effects.

So many things have been on my mind lately.  So many changes in my life.  I never thought I would be here. 

I've never been good with a 5 year plan.  Life changes so easily.  Best I could ever do was about 12 months out for goals.  Now?  I'm at August.  That's it.  Finish radiation.  That's all I got. 

Then what?  Work?  What am I going to do for the rest of my life?  What's my purpose? 

So many relationships have changed in my life.  People from my past have come back and those relationships mean so much to me now.  I'm lucky for them. 

Some "newer" friends I have only known for the past couple of years have been incredible to me.  I cherish all of the support I have gotten. 

Some people I thought were the close, real friends?  Not so much.  Some friendships have ended. 

I've changed so much during all of this.  I'm not the same person I was on October 1st, before I found the lump.  She doesn't exist anymore.  Parts are still there, but overall I'm just not the same person. 

I'm still struggling to figure out who I am now.  What do I want with my life?  Where do I want to go from here?  Who am I now? 

Sometimes, like now, I feel like I'm just going through the motions of life.  I'm tired, so I sleep all the time.  I miss so many of the exercise classes I was going to go to... I sleep through them.  Funny sometimes, I feel like I'm in high school again.  Weekends, I didn't see the am.  Life for me didn't start until after 12 noon.  Yup, that's about it now.  I might get up but I can't really start to function well, at least on a regular basis, until after 12.  Even then, that's pushing it sometimes!  And it doesn't last for long!

I was up with Jim today around 6:30am.  When he left, I somehow had a burst of energy.  I was going, with laundry, dishes, cleaning up in the living room, catching up on email, my budget for the month (SO sad!), what I have to do today and for the week, and getting as organized as I can.  Then I started to slow down around 10 and I was back to sleep just after 10:30.  I woke up around 12:15. 

That's been my life. 

Now what?  What do I do next?  Where do I go from here?  If I have changed as much as I have, and most of my relationships have changed at least a little bit, what is next?  Who do I become?  What else is going to change?  Where do I go now?  What do I do with the rest of my life?   What is my passion and who do I want to be?

I have no idea! 

I feel like I'm just drifting along, going through the motions.  I have no motivation for anything at all anymore.  I've lost energy and excitement for things.   Let me sleep and I'm good.  I'll hang out with my cats and play with them.  Rocco can fall asleep using my leg as his pillow and I like that. 

Now I even need to remind myself to eat.  I have coffee and cereal early, but I think that is more habit than anything else.  That was before Jim left at 7am today.  I haven't eaten anything since.  I'm just not hungry.  I know I should eat.  I tried.  I looked in the fridge.  Nothing interesting that I wanted.  I'd rather just nap again. 

But now I need to start getting ready so I can head over to Dana Farber for my shot.  I need to ask about getting the gauntlet for my hand, in addition to the sleeve I already had for my right arm to prevent lymphedema.  And I'm bringing in a bunch of old magazines that I was going to recycle so they can keep them around there.  I think that's it. 

And I need to get up now, before I fall back to sleep and miss my appointment for this shot!

Sleepy

This week I had so many different things planned to do.  At this point, I have realized it does not matter one bit what I plan.  My body might have other plans, like sleep, which is all I seem to be doing. 

The days this week are somewhat of a blur, since I haven't done much.  I left the house Monday for a massage appointment but skipped two other things on Monday.  As soon as I got home, I was back in sweats on the sofa.  And that was after sleeping in until about 9am. 

Monday night, bed around midnight, and I didn't get up until 10:45!  Yes, I slept for 11 hours.  And somehow still did not have any energy.  I skipped two things I wanted to do yesterday.  I think the most I did all day was shower. 

After showering, I found the energy to pull the hammock out of the closet and bring it downstairs and out to the back yard where I had set up the stand on Sunday.  I was laying on that for a few hours, in the shade, covered up and wearing sunscreen.  Rocco was hanging out next to me and making his way back and forth around the yard.  My little (okay, not so little) buddy!

Here are a couple shots of him hanging out with me yesterday afternoon.

He's right next to the hammock, hanging out with me.   

 

 

I love how he sits on the back steps!   

 

 

 

Last night, I was home hanging out as usual.  Jim goes to the gym on Monday, Tuesday and Thursday nights.  I was so tired, I couldn't have gone anywhere if I wanted to.  I think I ended up going to bed around 11 last night.

 

This morning I was up with Jim when he got up at 7.  I had a cup of coffee and a bowl of cereal and put on the morning news while I checked some email and did a few things on my computer.  By 9:30 I was back in bed.  I briefly woke up around 11:30 or 12 to cancel lunch plans with someone from work.  I finally woke up and got back out of bed just before 1pm. 

 

What's up with all this sleeping?  I'm friggin exhausted ALL the time.  I have absolutely no energy at all.  Yup, things need to go up in the attic.  Yup, there are clothes which have been sitting in the dryer since yesterday that need to come up.  Yup, clean dishes in the dishwasher.  Some family is coming down tomorrow night to visit.  I probably SHOULD start picking up the house a bit, but I just don't have any energy to move!  NONE. 

 

Right now, I don't even have the energy to shower and I kind of wanted to do that before Jim gets home from work in about an hour.  I told him I'd cook dinner tonight since this is his one weeknight that he's home and we can spend some time together.  I always look forward to Wednesday nights. 

 

I hope that I end up having some energy so tonight I will be awake. 

 

Right now, I don't know if its the new drug, the extreme fatigue, a new kind of acceptance or what it is that I'm dealing with.  I just know that I have to listen to my body and what it tells me.  When I'm tired, I have to accept that and rest or sleep.  I have to be okay with that, which is hard when I want to do so many other things.  

 

It is so hard to NOT do.  I'm a doer!  I remember one friend asking me more than once what my typical day was like.  She didn't understand how I had the time to do everything that I was doing and still work and sleep too.  But I always loved being busy and running around.  I was at my best when I was on the go. 

 

Now I've had to stop.  Not just slow down, but STOP.  And that is really hard to do and accept.  Even now, after sleeping 8 hours last night, then a 3 1/2 hour nap today, I could go back to sleep right now!  How is that even possible? 

 

So I am accepting that I can no longer DO as I have in the past.   I guess having Rocco as my companion is a good thing.  He follows me from the bed to the sofa or outside by the hammock.  Right now he is on the other side of the sofa with his head on that arm, watching what is on the TV, about to fall back to sleep.  He gets his little burst of energy then lays back down to rest and sleep.  LOVE him! 

 

 

Now I need to give two thank yous out for today. 

 

First to Jill.  Since I have been so completely exhausted, plus with the pain in my legs, organizing the Couch to 5K has been next to impossible.  I made it to the first one last week and that was it.  I had every intention of going last Wednesday night, Monday night and even tonight.  But I know that tonight there is NO way I will move.  Again.... unshowered after 3:30pm and its too much effort to think about showering right now! 

 

Jill has completely stepped up, offering to run the events for me when I can't make it.  I am SO grateful to her for this.  I appreciate it so much.  This fitness group has meant so much to me over the years, especially the Couch to 5K events.  I am glad that they can continue on while I'm not up for being there myself.  It means the world to me that Jill is doing this.

 

SO Jill, THANK YOU!!!

 

And today, another big thank you to give out (funny part, I'm not sure if either of these 2 read this blog or not, but I'm so appreciative that I need to give the shout out either way.  Maybe it will get back to them that I am specifically thanking them, since the un-named venting seems to go around so quickly). 

 

2nd thank you is to Jen O.  She has continued to send me so many cards, texts, emails and messages over the months.  She has been so sweet, thoughtful and kind always.  Today in addition to the nicest card, she sent the MOST AMAZING brownies and God knows I have sweet tooth!  I had one already and it was incredible!  The card with the brownies was "Have a sweet day".  How nice is that? 

 

Jen is such a great person.  She's one of those people who you are so unbelievably happy for when good things happen for them.  She bought a house last summer and her boyfriend proposed on Valentine's Day this year.  Her new position at work is finally coming together too and she just picked a date for her wedding next year.  And he is such a great guy too.  I'm just so happy for her. 

 

Yes, I'm a dork about it, but that's okay.  She deserves to be this happy.  She's always so sweet and so kind to everyone.  Always. 

 

There are so many others who have been so wonderful to me, who I am so grateful for as well.  I love the facebook messages and comments so much.  All the encouragement in this journey really makes a big difference for me, so a giant thank you to all of you... the too many to mention.  I appreciate the support so much. 

 

 

One final shot of Rocco to share.  We set up the mats I got Jim for Christmas under the window in the kitchen and put Rocco's bed on it.  Now he can sit there, look out the window and rest his head on the window sill.  But lazy boy also likes to nap on that bed under the window, in the sunlight.  I guess I can't blame him.  He's back to sleep over there now, after I just snapped this picture.  I love how the sun light is coming in around him!