Week Flying By!

Some weeks are like a blur, especially chemo weeks.  I get so exhausted and the fatigue is so much more than I could have expected, one day just runs into the next. 

Sometimes I even need to just look back at my calendar to see what I have done!  I just can't even remember.  Kind of sad. 

Saturday I spent the day on the sofa, napping on and off.  It was recovery day after the fun night out for the fundraiser.  Friday night really was a fun night.  As afraid of going as I was, it was good for me to get out, see friends and manage the "bald thing" with a crowd. 

It was obvious at the fundraiser which was for the Avon Breast cancer Walk, that I was going through chemo.  I mean, all dressed up and bald head.  But I didn't hide from it.  I was out there dancing my sore feet off and trying to catch my breath after each dance.  Of course, it might have been a little too much for me.  On Saturday I did notice a little swelling in my right arm.  Signs of lymphodema (since all the lymph nodes on my right side were taken, my body is still adjusting to "remapping" new ways to get access fluid out of my arm.  Joy!)

 Again though, Friday night was fun and worth me doing basically NOTHING on Saturday. 

Although, I did cook dinner for Jim and me that night.  I use the term "cook" loosely!  :)  We still have food in the freezer from the March Ellie Fund delivery for us.  AMAZING meals, all packaged up with cooking instructions.  No measuring or anything, just instructions of what to put where and for how long.  Easy peasy, even for me!  Saturday night delish!  Shrimp and pasta. 

Sunday was another long but fun day.  I had a Groupon from about a year and a half ago. It was originally due to expire on April 1st of last year for outdoor ice skating in Cambridge, but because last winter had no snow, they extended it to April 1st of this year.  Long story, but after one other attempt of ice skating around the time I bought the Groupon, and Jim still having scars on his legs (his fault for low socks on the night we were skating!), he refused to go again. 

I asked my friend Christine a month or so back if she wanted to go.  She had to cancel a few weeks back for a cold, but no worries.  Groupon was good until April 1st and its been freezing and below average temps in Boston anyway.  Yeah, not so easy! 

We drive into Kendall Square.  The skating place is CLOSED!  :( 

But all the way in Cambridge on an absolutely beautiful day?  So we drove a bit closer to Harvard Square, got an on street parking spot and hit one of Christine's favorite restaurants, Veggie Planet.  They had brunch going on and an acoustic set, like my "Coffee House" station on Sirius Satellite.  It was so much fun! 

Here's a cute shot Christine got of us. 

 

After we finished lunch, we walked around for a bit to a few stores.  Not too many though.  The car was only about a mile from right in Harvard Square too, so not too far.  It was just such a NICE day out!  Nice to be out and get some air.

 

Holy COW did it wipe me out!  I napped as soon as I got home! 

 

I did end up cooking dinner for me and Jim that night (taco night again, that's one I'm actually really good at!)

 

Monday my plan was to hit the YMCA, especially since I missed it the week earlier when Jim needed my car.  Um, NO. 

 

Sunday night I was in bed asleep before 10:30.  Up at 6:30 with the alarm, had my coffee and cereal.  I was back to sleep on the sofa by 8:30 and napped until 10:30.  I can't really remember what I did while I was awake from 10:30-12:30, but at 12:30, I didn't even try for the sofa.  I went back into bed! 

 

When Jim got home, Rocco heard the car door or Jim unlocking downstairs, not sure which.  But Rocco getting up and running around at 4:30 is what woke me up from my FOUR HOUR NAP!  And I was still in bed on Monday night before 11pm!  WOW! 

 

That made me realize that an every other day thing is not going to work for me.  It was a bit frustrating because the day before chemo is supposed to be my best day in the whole 2 week cycle!  But I took 2 naps for 6 hours?  Really?  What a waste.  Even though its what my body needed, it was still frustrating that I didn't and couldn't do anything else.  I just didn't have ANY energy at all. 

 

Tuesday morning Tracie was over bright and early to get my butt to chemo.  They changed it up this time.  Since I can't get the chemo IV in the crook of my elbow, and taking blood can compromise the veins in my arm for the blood return they need for some of my worst drug, they wanted to do a separate needle to draw blood on the "good" vein at the crook of my elbow. 

Needless to say, tears were involved.  I'm not good with the unexpected, especially on chemo day.  Poor Tracie was left in the waiting room for a while, when I left there to head to the exam room to see my oncologist.  I had to wait there for over 25 minutes!  WOW! 

 

But good news with that.  My numbers are great!  Normal white blood counts are in the 4000-11,000 range.  I was at 12,000, which is GREAT!  Next time I'm starting a different chemo cocktail (will be on Taxol only for the next four treatments), I will need to take 5 of the steroid pills the night before chemo and 5 more the morning of.  Then I'll also get more in my IV with the premeds.  She still wants me to go in for the shot to boost my immunity the following day as well. 

 

My oncologist doesn't want to stop that to chance my numbers dropping too low, pushing off chemo for a week, and then setting everything else back further, so for now, she'll keep me on the shot.  Because of that, she said she wouldn't be surprised if my numbers shot up to 20,000 in a month from now.  Hey, whatever, as long as I can keep on schedule, that works for me.

 

Next time will be rough too.  Not only starting a new drug with a new set of side effects and a new setup of the day, but my regular nurse Ashley who I LOVE is going to be on vacation that week! :(  Good for her and all, she deserves it, but OH NO!  Hopefully things will go smoothly with Ann that week.

Anyway, back to Tuesday.  Tracie was great.  She distracted me when I was getting my IV which SUCKS put into my arm.  And Christine popped over to visit while I was getting my pre-meds.  She was still there when Carrie stopped in during her lunch break, but Christine had to get back for a meeting. 

 

Tracie and Carrie were so funny both distracting me when Ashley had to put in the 2nd IV of the day and take out the first.  They talked faster, louder and leaned in closer to me!  But it was SO nice and really really made a HUGE difference.  Even though my eyes were almost popping out of my head. 

Have I mentioned I HATE needles?  How the hell did I get 5 tattoos??  If I suck at just getting an IV??  

 

Wednesday morning I had a bit of energy.  Measured the back room to try to figure out how much of everything I am going to need.  Then I headed off to my support group, first time I made one the day after chemo.  But I'm glad I went, we won't have group next week, so in case I'm not up to it in 2 weeks, I'd rather not miss 3 weeks in a row.  I do get a lot out of it, being around so many who "get" it. 

 

After that, I stopped at D'Angelos to meet someone from work for a quick lunch before I had to head over to the cancer center for my immunity boost shot. 

 

I barely made it home before I was out napping on the sofa.  That was all TOO much for me the day after chemo.  Jim called on his way home from work and that's what woke me up.  My plan had been to start dinner while he was driving home, so it would be ready for him shortly after he was home.  HA HA HA!  Not so much.  HE was the one who started dinner when he got home.  At least I was able to finish the cooking and set the table and all that.  And dinner was good.

 

I was a bit stressed last night... too many things on my mind again.  The what if's and all that.  Someone from the support group, who joined around when I did, she's not doing well.  Hospice is now involved and they don't expect her back to group.  That's just sad. 

 

Two others in group both originally had breast cancer.  They have each had cancer 2 more times since their originally diagnosis.  One just did crazy strong radiation, 3 treatments over 3 weeks and super fatigue with it.  All for a cancerous spot that was found on her spine. 

 

Is this what my life will be like forever?  Anything that happens, any cold, cough, muscle ache, anything.... I'll just automatically assume and associate with cancer?  Is it related or not?  Will it be a recurrence? 

So it was a tough night.  All of that was on my mind and I was telling Jim about it while I was laying on the sofa. 

 

Again, he's just SO good.  He said, "Come on Baby.  Let's go into the bedroom and I can just give you a big hug." 

 

So he held me, let me cry and he said he wished that I didn't have to go through all of this.  Me too!  And I wish HE didn't have to go through all of this either! 

 

But that was all last night.  Today is a new day. 

 

He's working from home this morning (flat tire on his car right now).  I'm leaving in a few, if I get off my butt, to try to get to kickboxing today for the 10am class. 

 

Then when I get home, he'll take his tire in the back of my car to the place down the street from his office, so they can fix it while he's at work.  And I'll most likely be home napping. 

 

Fingers crossed I can handle kickboxing today. But the exercise helps.  Doing things I LOVE to do help too. 

 

I'm staying positive and hoping for a great day! 

The second half of this week has been great.  I needed this so much.  It reminded me about how many wonderful people I have in my life and all that I am grateful for.  I've known now many people I really do have, but sometimes its hard to see that when things get rough or when I get down & have a few bad days in a row. 

Wednesday was pretty busy with the support group (they gave us the prettiest daffodils that were given to them from the American cancer Society, all have now bloomed and are SO pretty!), then I met with  my social worker, plus saying hi at the Patient Resource's room at Dana Farber.  Debbie is amazing!

Debbie is one of the nicest people I have ever met. She is so kind and giving. One of those people you can tell anything too, who won't judge and is just supportive and NICE. I had told her about the email from hell last time, so she asked about that and how I was doing. I told her about my anxiety for Friday (she wants to know how the party goes).

I had on one of the hats that she had given me before. Community groups donate hand knitted hats, lap blankets, pillows (for breast surgery to put between your chest and the seat belts. I sleep with mine too, still! She gives 2 pillows to each person.) She pointed out that she got some new Spring hats that were in the window. OMG they were SO cute! She had a white hat with a purple flower and another off white with a purple bow. They were adorable. I didn't want to take 2 more hats from her   But she wouldn't let me leave without them. She told me she would throw them out if I didn't take them. :)

I felt guilty taking 2 of the cutest ones there. She wouldn't hear of it. She said they looked great on me and she wanted me to have them. How nice is that? I wore the white one home.

On my way home, I stopped at Home Depot and walked around for a while.  I'm going to become very good friends with everyone there.  Glad there is one less than a mile from the house! 

I think I came home with at least 20 different cards for paint colors.  I even found light switch face plates that I want plus the new closet doors I want to get.  I have it planned out in my mind, roughly, what I want the room to end up looking like, but I'll have to start looking for furniture that I can fix up too. 

Jim was in that room with me on Wednesday afternoon.  Both him and I agreed on a blue that we liked for the room.  We'll start by taking out the furniture to clear out the room.  Not sure where everything will end up being stored for the time being... between the attic and the cats apartment I guess.  Then I can start sanding down the walls and patching the couple of holes before the ceiling guy starts.  Then it is ALL on my time, when I feel good and have the energy to do things.

I'm looking forward to doing all of this.  It will be a blast.  I'll have to take pictures for before, during and after.  Right now, those walls are just HORRIBLE.  The green is NASTY.  And forget the border that is half down.  Its just not pretty. 

Then onto Thursday. 

I MADE IT BACK TO KICKBOXING!!!!  Finally!  It was SO much fun!  Of course I tweaked my back.  Not the top which I had a bulging disc.  Not the bottom where my SI joint was out.  But the middle, right in the area of my bra strap.  It was from the round were we were doing back to back hooks.  I could feel it go. 

But other than taking it easy from a few things, not doing plank or mountain climbers or burpies, I did pretty well and held my own.  It was nice to get in some punches and kicks on the bag too. 

A couple of minutes after I got there, someone I have partnered with so many times, and I'm friends with on Facebook, showed up, walked over to me and gave me a hug.  Marlene was wearing a shirt of hers that's my favorite (come to find out she has 3 shirts that say the same thing!)  Right across the front in BIG letters it says, "Kickboxing Grandma!"  She rocks it!  Such an inspiration to see.  She told me she's turning 60 this year!  How great is that?

And after class started and Heather had us already sweating out butts off, Master Xavier, the owner, walked in.  He came right up to me, yelled "JULIE!  Julie's Back!!"  And gave me a big hug.  It was so nice to have that sort of reaction and to feel so welcome there.  I missed it so much. 

During class, Master Xavier kept yelling out my name and saying things about me to the whole class.  Marlene laughed and said it was like I was a celebrity. :)  I love them all there and I'm really looking forward to when I can take my next class. 

After class I grabbed my phone and has Master Xavier take a picture of me as I was trying to hold a Roundhouse kick.  Right after the picture, I almost fell over!  Not great with balance on a good day.

I posted this on Facebook and made it my profile picture too.  I got so many incredible comments from people that were so supportive and encouraging. 


Then Master Xavier posted this on the kickboxing's private Facebook page with this comment:  

Here she is back in action. For our new members who have not met Julie Orsillo, there's no doubt she's going to kick cancer's ...! Especially if you see power of her roundhouse. She won the $3,000 from the referral contest last year but this year she's on a bigger mission. Great to have you on the mat Juls.

 

After I was done with the amazing class, I headed home.  I had another doctor's appointment that afternoon, then met a friend at the mall after a quick stop at one other store.  It was really nice to catch up with Melissa again while we walked around the mall, had dinner, then each did our Target shopping. 

Poor Jim didn't end up going to the gym that night.  He thought he was fighting a cold for a couple of days and it did end up hitting him.  He was watching a movie in the back office.  He didn't want to be on the sofa in the living room because he didn't want me to get his germs.  He even ended up sleeping on the futon back there!  Poor guy!  But Rocco joined him, so I had the king sized bed to myself all night.  Got some much needed solid sleep. 

Friday morning I was SO slow to get moving.  I was drained from the day before and just couldn't get my butt into gear.  I was supposed to meet my friend Jen 45 minutes away at 11am.  At 10 I was still sitting on the sofa in my PJ's.  She was so great about it and offered to just drive all the way down to me (maybe an hour and 15 minutes away?).  I'm not tossing her under the bus here with her crazy detour but that area of 93/95/128 is pretty confusing.  Not sure where else in the world you would be driving and heading north and south at the same time. 

Anyway... we had a great lunch and hung out and talked for a while.  It was great to catch up and be able to freely talk about how I feel on different things with someone who understands where I am coming from.  Plus, she gave me a great pep talk about going out on Friday night! 

Which leads me up to last night.  It was SO much fun!  I wasn't expecting to have that much of a good time and I'm glad I did.  It was nice to be out with friends and have fun and slightly forget all the crap that's been going on in my life.  I felt like me again and it was nice.  Refreshing. 

Lately, I haven't been feeling great about myself.  I've lost so much of my self esteem and confidence.  I have scars on my body.  I'm bald.  I've gained 15 pounds now and even my fat jeans are tight.  It sucks.  I feel nasty.  I wanted to feel good and thought if I felt better about how I looked, it would be easier to do that. 

SO I bought myself a new dress for last night.  And shoes... and a necklace.... and earrings.  But, it was ALL so cheap!  The total of all of that was only $68!  Not bad, right?  And I love the dress too.  SO cute. 

I had already made the decision to go bald.  I was seeing people I knew there.  They knew I lost my hair already.  And if I went in with a wig, they would know it was a wig and know I was bald underneath.  For me, that's harder.  I am more comfortable wearing a wig out at a mall with complete strangers than I am with people I know.  That's hard and I haven't done it yet. 

Anyway... I was nervous about going into the party like that.  After all, this was the Betty Boobs fundraising party.  They are doing the Avon Breast cancer Walk, which is two days and 39 miles.  They have to raise $7000 for the two person team.  And here I would be, walking into this breast cancer fundraiser... bald.  I needed the rest of me look good. 

I met 2 friends to go to the party with them, which I appreciate SO much.  That way I didn't have to walk in alone.  We scoped out the tables and got the one right in front of the bar.  Easy to figure out when to get a drink!  :) 

We ended up with 8 of us at our table.  It was fun to see everyone.  My friend John came down from NH.  He has done the Pan Mass Challenge for several years now and has lost so may people to various types of cancer.  He's such a great guy.  He's met a bunch of my friends from different 5K events too.  Plus, he's an AMAZING dancer... used to compete nationally.  So good!  He can make anyone look good on the dance floor. 

Karen, who hosted the party, stood up before the raffle began to thank some of the sponsors who donated time and raffle prizes for the event.  Then she made most at our table cry.  We were all reaching for napkins.  She said how she started running 5K by doing a couch to 5K program several years ago.  How because of that, she finished her first 5K, plus many more and even 10Ks now.  Then she said, this person also started as a couch, but within a couple of years ran the Boston Marathon.  Then mud runs, diva runs and more.  And she said she was dedicating this years walk to her, she knows who she is. 

I can't even remember what else she said.  I was trying SO hard not to cry.  It was really sweet and touching.  I'm sure everyone in the entire hall knew it was me.  I mean, I was the only women in there who was bald, so it was kind of obvious! 

During the night, a few people I didn't know came up to me.  One knew one of my friends and asked me if my name was Julie.  She has been to the same kickboxing studio and saw the picture of me that Master Xavier posted.  She said she had liked the photo on Facebook.  She had heard about me, being the national winner of the referral contest last year and loved the picture. She thought it was great that I was back at kickboxing now. 

Someone else who was selling some of the raffle tickets came up to me to tell me that I looked beautiful.  She was sweet about it too.  I could see her eyes teary and it was very genuine and sweet.  I really appreciated it, needed it and it was just so nice of her. 

Before we were leaving another person came up to us to tell me and John that we looked great on the dance floor.  Him and I danced for maybe 5 west coast swing dances together.  It was so much fun to try doing that again.  But it left me WIPED OUT!  My heart was racing and I had a hard time catching my breath after each one.  I wouldn't have changed it, because it was a blast, but WOW, I feel it.  Talk about being out of shape! 

We kicked butt on the raffles and prizes.  They first announced Tracie's birthday and had the hall since her happy birthday (it had been on Sunday).  Then Liz won the door prize.  Tracie got one of the silent auction prizes too.  And with the raffle?  We started off slow, but ended up becoming one of those tables in the end.  I got "date night in" with gift certificates for 2 free pizzas plus a bottle of wine I took home.  Tracie won the Lux Level movie tickets plus the Joe's gift certificate.  Jen got the bottle of champagne.  Carrie took home a Golfer's Warehouse gift certificate and Christine won the set of Dr. Seuse books.  I think Jill and John were the only 2 at our table who didn't win anything last night. 

I was home around 11:30 last night, and exhausted.  My feet were killing me from wearing brand new shoes, plus dancing in them (but they were so damn cute!).  Jim slept on the sofa last night to keep away from me again and hopefully he'll be feeling better by the end of today. 

Between the pictures I took last night and the few my friends have already posted on facebook, here are a few....





Here is Christine, me and Carrie towards the beginning of the night.

 

These two are of me and my friend John.  John said we've known each other for 15 years.  I'm not sure exactly, but I do remember that I first went to a West Coast Swing lesson with him and his ex-girlfriend in early 2001, so it has been at least 12 years now.  

 

Christine did take my camera when we were dancing but they didn't end up coming out great of us when blown up.  But that's okay.  :)

 

 

 

 

Before dinner, Jen, Carrie, Liz and Christine are all drinking their wine out of the little plastic cups the bar gave us.  At least they gave us single serving sized bottles of wine with the plastic cups!

Here is one of Jen and Christine hanging out.  Jen's bottle of champagne is in the shot too!  

 

 

This is a cute one of me with Tracie.  I think this was the 3rd try.  I can still do okay shots that I'm in but it came out much better when I passed my camera across the table! 











And here is the whole table.  Jill, Carrie, Tracie, Liz, me squishing down, John and Christine.  It was a really fun night and I'm so glad I went. 

 

Lost

This week hasn't been busy nor has it been easy. 

As much as I knew the side effects of chemo would be cumulative, I still didn't expect the fatigue to get worse or last longer than it originally did.  Chemo was last Tuesday.  Monday?  I did NOTHING.  I got in the shower (and out of my pj's) at 7:45pm.  Yes, PM! 

My day on Monday was spent on the sofa, dozing on and off all day.  Besides my shower just before 8pm, I put the clean dishes away from the dishwasher and also cleaned out the cabinet under the bathroom sink.  Oh and I watched TV.  That was my entire day.  All day! 

Originally I was supposed to go to the YMCA to work out with the trainer, but Jim needed to use my car for work.  I'm not sure if it was fatigue kicking my ass, not having the ability to go anywhere (I will NOT drive Jim's car.  GOD forbid something happened while I had that thing... a 2 seater Mercedes convertible?  HELL NO!)  or if it was a combination of the two, but I had NO energy at all and it sucked. 

Tuesday I was supposed to FINALLY go back to kickboxing.  But Monday night it snowed again and they canceled the 10am kickboxing class.  I actually HAD my car and it was crappy out all day.  I did manage to shower during the day, never took a nap, did 3 loads of laundry, plus picked up a few things around the house.  It was nice to have energy, but frustrating to again, NOT do what I wanted to do. 

I was bummed too, because I feel horrible about myself right now.  First, I have nothing going on.  My focus and ability to comprehend things and retain information is so slim right now.  I have a pile of magazines I don't even have the attention for!  Forget about trying to go back to work.  I'm too afraid of how much I'll screw up and make big mistakes.  Not a good thing. 

Then toss in, I haven't done any exercise, other than a day here or there, in about 5 months.  Really?? Sitting on my butt all day, bored, eating crappy food, not exercising and having steroids as part of the drugs that I am taking?  Can you say 12 pounds?  Yesterday I dug through the back of my closet to see the old jeans I had back there.  I really thought I tossed them all, but my "fat" jeans were back there.  Hmmm.... yeah.  Tight.  :(   My fat jeans are TIGHT!  I have gained 12 pounds in 5 months.

I feel like a disgusting slob.  With scars across my chest, a bald head, and now being fat?  And having nothing to do most days other than sit my ass on the sofa?  Oh yeah, I'm feeling really good about myself! 

I need a hobby!!!!  That's what I said to Jim yesterday. 


Oh, I did leave the house yesterday.  I found a patio set online yesterday, when I wasn't even looking.  I just happened to look at the local Target ad online.  It isn't the prettiest set, but a table, umbrella, and 4 folding chairs.  $99!  The damn table by itself in the store was $84 and the chairs were $25 each.  SO its kind of like getting the table and umbrella for free.

Last summer we put so much effort into the backyard, building the patio.  It looked so good when we were done (okay so now the 1948 Olds that Jim bought to restore is on it, along with the 1950 something yard tractor/snow plow thing he bought about a month ago, but whatever).  I told Jim that in a few weeks when it starts to warm up, I want to pick up the backyard again. 

I would love him to move the car and tractor OFF the new patio and a bit off to the side.  I want to clean up the rest of the yard again, put out the new patio set and the hammock that I bought Jim the Christmas before last.  His parents gave us their HUGE grill they don't use, so we have that back there too.  It will just look nice when its cleaned up and done.

We could have dinner out there, relax out there.  If Jim's working on the car, I could lay on the hammock and read or nap (in the shade of course, since I can't get sun and am sensitive to it with chemo).  We could have people over and now we'll have a place to eat outside too.  I want to get a couple of plants and pretty it all up.  It could be really nice back there.  The yard is a good size, not huge, but a good size and could be really nice. 

Then I came up with another project, another thing to do with my time.  I've been spending way too much time watching HGTV and DIY.  All the flipping shows, remodel shows, Curb Appeal, etc... all of them.  It just makes me want to do so much.  I've always loved things like that, but I always rented and never had the okay to even paint the walls!  But now I'm here, at Jim's house, that he owns and was gutting. 

He did an unbelievably amazing job with the kitchen, living room, bathroom and bedroom.  They look SO good.  Every time someone comes over, they can't get over how nice the kitchen is.  It is beautiful! 

Jim didn't do the back two rooms.  The back bedroom and his "office".  His desktop computer is back in the office, with my parents old futon and his old flat screen TV (wasn't big enough... boys and their toys, I guess).  I wouldn't tough that room... kind of "man cave"-ish.  But the other room?

He did buy a bedroom set, off Craigslist I think.  Its nice and all, but too big for that room.  My old mattresses are on the queen sized bed, but I want to move the frame to the attic and move the dresser out of there too.  (the other pieces are in his office).

THEN I want to redo the room!  Clean up the hardwood floors, fix the hole in the wall, paint the God awful bright fluorescent green walls, do a DIY project to make a headboard for the bed.  Buy old furniture to fix up from a flea market, salvation army or yard sale thing to put in there too. 

Eventually Jim wants to extend the back of the house, put in a new stairwell, make a master suit on the 3rd floor (attic) and he said he might have to rip out part of that back bedroom to do that, so he sees it as a waste of money and time.  But, like I said, he has the 1948 Olds he is remodeling.  His work has been insane, working nights and weekends at home.  He goes to the gym 3 nights a week for MMA classes.  He wants to do pavers for the 2 driveways in the spring.  I know I'm missing other projects he wants to do. 

So the master suit on the 3rd floor, extending the back of the house, moving the stairs, ripping out part of the back bedroom?  That isn't happening in 2013.  Most likely not even in 2014.  He was talking about doing it when I met him 2 years ago! He has SO many things he's doing and working on, that finding time for it all is his biggest problem. 

I figure, if he never gets to it, then the backroom isn't the horrible green anymore and the room will be nicer and overall increase the value of the house, even though I wouldn't be spending a ton of money on it.  And it will be a PROJECT!!  I could have a hobby, something to do. 

Now Jim said that he doesn't think I should be around all of that, the dust, chemicals and whatnot.  He wants a doctors note that I can.  Since I got a doctors note to not shovel, he wants one that I can work on the back room. 

Tuesday I'm asking my oncologist about it. 

Last night I was on Home Depots website.  I found a ceiling fan/light that I like and want to use for that room to replace the nasty one in there.  I want to do wainscot paneling in white on the bottom and blue on the top of the walls.  He doesn't have color in the house, all taupe's and neutral colors.  I love color and want to do something different.  Then refinish furniture I find for the room and make a headboard and find funky fabrics and textures for it too, but all for cheap.  Learn as I go and do most of it myself. 

Jim said he'd need someone to come in and do the ceiling.  I know he'd need to take out some of the horrible ceiling lights and then put in the new light I pick out.  I'm not sure how to fix the hole in the wall along the closet, so he might need to help me with that, but sanding the walls, painting, cleaning up the floors?  Doing the furniture?  I'll need help MOVING things, but actually doing all of that, I can do.  And I don't think it will take too much time away from all the other things Jim wants to do. 

And I'll have SOMETHING to do!  Physical, moving, not too much to mentally tax myself with to make me feel overwhelmed or frustrated that I'm not getting.  And cheap.  Chemo is going on for another 2 months.  Its not like I don't have time on my side here.  And that's before radiation starts too.  (which also causes intense fatigue).

I just got excited about finding something to do.  Its been a while since I've had that.  Originally Jim mentioned getting another dog, so Rocco has a friend.  I started looking up young female American Bulldogs up for adoption.  Not a puppy, but still young.  But now Jim doesn't want to do that and thinks it would be too much on me during treatment (I think its a good time to get a new dog, since I'm actually HOME all the time.  Seems perfect to me!  If I can get the doctor to okay that one too!  Hmm.... )

So then it was off to HGTV and finding a project. 

I'm looking forward to more exercise, getting back into shape and feeling better about myself.  With not working out, gaining as much weight as I have, being bald and having scars, all of it has hit my confidence.  Sitting home all day doing nothing, dealing with chemo side effect like fatigue and chemo brain and the crap that happened a couple of weeks ago when I reached out to friends for help added to it too. 

Lately, I have felt so lost and so down.  I don't have anything to focus on or anything to contribute to, just getting through chemo.  I know that my health and being focused on that should be enough, but it isn't.  I need to actually be doing something.

It was hard to think I had exercise on Monday and Tuesday and to have them both not happen.  I'm looking forward to doing something physical again.  Tomorrow I'm doing SOMETHING, not sure what yet.  I'm signed up for one fitness thing at the cancer support community, but kickboxing is at the exact same time and I'd LOVE to go there too. 

Hopefully things will start to look up and I can get a new focus and feel and then feel better about myself overall too. 

The rest of this week should be really good, so I'm positive about it all.

Today I have a couple of appointments, that I need to start getting for!  Tonight Jim is home.  I have food out of the freezer to cook for dinner so we can sit down and eat together, which I love.  He is going to help me work out at home tonight, in the living room (since I really can't be in the basement in the home Jim).  Then I'm going to do some yoga stretches to help Jim stretch. 

Tomorrow I have some sort of working out thing, then a doctor appointment in the afternoon.  After that I'm looking forward to meeting up with a friend again. 

Friday will be busy too.  During the day for lunch, I'm getting together with another friend and that night is a fundraising party for the Avon Breast cancer walk.  Team Betty Boobs party.  I'm looking forward to that SO much.  A good friend who I haven't seen in about a year is going so it will be nice to see him too.  Plus he's an AMAZING dancer, so I know I'll get some time in doing the West Coast Swing with him, and he'll just make me look great on the dance floor.

So I have lots going on to look forward to and I'm trying to focus on all of that.  I need positive things to look forward to.  That will help get me through all of this in a better place mentally, which will help me get through treatments more easily and to heal that much better from everything. 

I know I can do all of this.  I know I'm stronger than this.  I know I'll make it through this. 

The road is very hard and has so many bumps along the way but I'll make it.  I have great people by my side supporting me and helping me, cheering me along.  Their help and support gets me through each day. 

Thank you SO much to the friends who do check in and say hi in whatever way... calls, texts, emails, facebook messages, cards, whatever.  I LOVE them all and need it.  Without your support, I feel so lost and alone and I can't do it.  I NEED you and your support so much, so please know how much I love and appreciate you and the support you give.  You make an unbelievable difference in my life.  You get me though each day. 

Thank you for that. 

Don't ever think that reaching out to say hi or thinking of you to someone is a bad thing.  I may not always respond right away.  It may take me a while to get back to it.  I have messages I read on Monday that I haven't replied to.  I was toast then, and I forget to go back sometimes.  But it means the WORLD to me to hear from you.  It matters to me.  Your encouragement and kind words are so important to me. 

Thank you for your help in feeling better about myself and getting through the challenges of this.  Thank you just doesn't seem enough... I guess that's why I'm rambling about it, but its all I can say.  What you do, matters.  Thank you. 

Your Hair is a Great Color!

The weekend has been pretty good so far. Quiet, but nice.

Friday was a BUSY day though. I met with state Rep. Jason Lewis along with 3 of the 4 women who are leading the changes in Massachusetts for legislation requiring women with dense breast tissue to be informed of their risks. It was nice to feel like I was actually DOING something.

Good thing they were with me. This is one of those things, I KNOW I don't know! Writing a bill? Really? They had it written, its in committee and Rep. Lewis seems to now be on board, although it is a very long and slow process to make the change. He was very encouraging and supportive at the same time. Might have helped that I took my hat off and was bald as soon as I walked in.

Side note... not sure if people know what to do when they see me bald. Great glasses! Nice earrings! Guess these accessories now show up a lot more than they before, when I had hair.

After the meeting, I went out for lunch with dad. It was nice to catch up with him. That was the first time he saw me bald, and I think he did well with it. At least he got to see the pictures that I posted online, so he had that to go from.

I crashed when I got home from lunch... napped for a couple of hours. It still blows my mind how much a couple of hours out just knocks the absolute crap out of me! I'm wiped out! Drained beyond anything I can explain. Lifting my head up is hard.

Anyway... at some point, I found some energy and got ready. Jim and I went out for dinner at the 99, which we haven't been to in about a month... right after I started chemo. They were all great there. I got hugs from all the bartenders and everyone came over to say hi and see how I've been doing. I even got the courage to rock the bald look there.

Saturday was a quiet day for the most part. I was exhausted and napped a few times during the day. Jim is still busy with work, even when he's home. He spent a lot of Saturday working.

We did end up going out for a bit that afternoon. I needed to get some more moisturizer, Clinique Intense Moisture Surge. We were going to head out to Macy's at that mall, and go food shopping.

For the first time ever, I wore a wig out. I was nervous about that one too. What if it was windy? What if the wig moved? What if it looked too "wiggy"?

When we got to the mall, I told Jim he couldn't head off on his own. I needed his eyes if the wig moved on my head at all. I was just really nervous about it.

Once inside, Jim started looking at some things from himself. I finally found the courage to go off on my own. I did okay. Didn't find anything while I was shopping around Macy's but I could look around myself. When I found Jim, he had one shirt he was buying. I left him so he could go pay then I headed over to the Clinique counter to buy the moisturizer I wanted.

I got over to the counter and when the sales women came over to help me, the first thing she said to me was, "Your hair color is great, I love it." It was all I could do to NOT laugh in her face. I couldn't wait to tell Jim when we left.

After food shopping, we came home and I cooked dinner (without burning anything!). It was nice to end up falling asleep in Jim's arms again. My favorite place.

Today was a nice day. I was still super tired and was laying on the sofa for most of the morning.

Jim took a break from working so we went out for a bit. We got Rocco, headed out to the park in the next town over and went for an hour long hike. I can STILL feel it in my legs right now. And it KNOCKED me out for the afternoon, but it was so nice to get outside and get fresh air. I needed that.

We just had a nice weekend together. It was good to spend time with Jim. No doctor appointments, no chemo, no sickness, no nothing. Just spending time with Jim. And I loved it.

This week should be another good week. Lots going on, weather up and down, but Friday night should be a blast for the Betty Boobs party. I'm looking forward to seeing some really good friends and celebrating their own things with them. It should be a nice night.

OH, the photographer posted another picture of me. One of me in the wig that I wore out on Saturday night. Weird how different I look in each picture.

 

More Side Effects

In most ways, I'm lucky with the side effects I've had with chemo.  I read and heard horror stories.  I thought I would be tied to the toilet or a bucket, puking my brains out.  I haven't been sick once.  The meds they give me for anti-nausea are great and work. 

My oncologist had told me in the beginning, there is no reason for me to be sick.  Not with all the meds they have available.  That made me feel better. 

My chemo is Tuesday.  That night I start on Claridin-D 12 hour.  I take that to prevent the bone aches that can be severe with the shot I get on Wednesday's to boost my immune system.  I heard those bone aches and be incredibly painful.  Luckily, I've been fine.  I start Claridin-D on Tuesday night, then am/pm for Wednesday, Thursday and Friday.

Then my anti-nausea meds.  I take 2, one is a steroid.  Those start on Wednesday morning and I take those am/pm for Wednesday/Thursday/Friday.  Add in my other am med, 2 other pm meds, plus the daily gummy multi-vitamin I take.  I feel like I'm popping pills every day.

But, it keeps me from being sick.

I have one other med for anti-nausea.  That is one I can take as needed.  I seem to take a couple of those in the days after chemo treatment.  Last night I wasn't feeling great so I took one.  Same thing on Tuesday night. 

Otherwise, I haven't felt sick, at all, so that's REALLY good!!

Three side effects, bone aches, vomiting, & nausea... I have lucked out.  That's good. 

Fatigue?  OH MY GOD!  I get bursts of energy, then I'm toast.  I have a busy evening tonight, so I've been trying to take it easy today.  After 12:30 and still in my pj's, thinking about a nap pretty seriously. 

Yesterday I was really slow in the morning, which seems to be pretty typical now.  Just dragging and really slow to wake up and get moving.  Some days it is just hard to get the energy to get off the sofa.  But once I did yesterday, I felt good.  I met a friend of mine from work for lunch.  And surprisingly, I ate!  Then I had to stop at CVS for four different prescription refills. (the box of receipts for taxes next year is already NUTS!  I try to organize it now and again, but OMG!) 

After CVS I headed off to Dana Farber for my shot.  I needed to pop into the store there to ask a question and waited and chatted for a minute with Debbie from the Patient Resources room.  She is amazing.  I absolutely love taking to her.  She always has wonderful things to say and I just feel better after being around her.  I love people like that.  Such incredible energy, so positive and always supportive.  (whenever I hear of nice tid-bits or other resources I come across, I like to pass them along to her, if she isn't already aware.)

I could feel myself starting to crash while I was at Dana Farber.  On my way home, I had CNN on Sirius, listening and waiting after the white smoke came out with a new pope chosen.  When I got home, I put on TV, watched him come out and be introduced, and listened to his blessing.

Then I put on Coffee House on Sirius and crashed.  That was about 3:30pm.  Jim briefly woke me up when he got home from work, I'm guessing around 4:30-5pm.  Then I was immediately back out.  I woke up at 6:45 last night.  Um, 3+ hour NAP?  WOW!  I was just drained... from a couple of hours out!

Yup, that's fatigue.  I didn't eat dinner, no appetite.  I had a protein shake to get some fluid, calories and protein.  Whatever works when its chemo week. 

I was back in bed around 10:30 and out cold.  The alarm for Jim went off around 6:30 this morning.  I feel like chemo week, all I want to do is sleep.  My blood count numbers are higher, but I have very limited energy and its so hard! 

When I had some energy today, I did a few things around the house.  I got ready for a meeting I have tomorrow morning because I know I won't have time later.  Needed to print several things I had saved for it.  I think I'm as ready as I can be for the meeting, we'll see. 

Other side effects?  My hair, that's a given.  This morning Jim shaved it closer.  He used the shortest blade 2 weeks ago, but so much of that has fallen out, my head had spots.  It looked stupid and made me feel worse.  If I'm bald, I'm bald. 

So he used the clippers without any extra length blade. Close to a Bic shave but I can't use a real razor at all... not allowed for risk of infection.  Now, VERY close.  As I'm laying back on the leather recliner, my bald head is now sticking to the back.  Kind of like your legs sticking when you sit.  Not exactly comfortable.  Oh well. 

Now I'm going to have to wear hats more often while I'm out.  The cold.  No more little pieces of hair to do any protecting on my head.  Just completely bald now.  I've noticed I'm more cold at home today too.  So my hat that's fleece lined has been on most of the day.  I just got up now to grab that... not sticking to the sofa anymore. 

With losing my hair as a side effect, right now its weird.  My head came out in pieces, spots.  Not even.  That's why I wanted it shaved.  I still have my eyebrows and eyelashes, but eventually those will all be gone too.  I have thinning hair on my arms right now. 

If there is any advice I can pass along to any women having a mastectomy then chemo... WAX!!! 

After surgery, I was not allowed to use even an electric razor.  I couldn't raise my arms and it was all too close to the incisions, including the incision under my right arm where they took the lymph nodes from.  That's a 2+ inch scar now.

But eventually I got the okay that I could shave my left underarm and use an electric razor under my right.  Wonderful, I am no longer a hairy beast!  It was getting pretty bad there for a bit.  I think I went close to a month without being allowed to shave. 

Then I started chemo. And here is wish I again, WAXED!!!  Everything.  My oncologist said I am not able to use a razor anymore.  It can cut and then cause infection.  With my immune system so suppressed during chemo, NOT recommended to shave with anything other then an electric razor. 

Hair does not all fall out evenly.  I still have some hair I have to use the not wonderful electric razor on for my underarms, legs and bikini area.  Um, electric razors?  They suck.  I shaved my legs with my real razor every damn day.  Now I always have stubby legs.  I hate it. 

So now, I'm bald on the top of my head.  I have a 2+ inch scar on my right stubby underarm.  I have four inch scars across each breast that I don't have feeling in and everything else is stubby!

Can you say, "MAN I FEEL SEXY!"  Um, NO!  Not at all. 

SO yeah, WAX!  If you know anyone going through anything like this... just one little thing to help, not have to worry about hairy legs or armpits.  My GOD that would be a difference.  On top of everything else. 

I don't like that I've lost a lot of my confidence and self esteem.  I used to have it.  Now I don't.  Between not working out pretty much at all for 5 months, hormone changes, chemo, menopausal symptoms, and steroids?  Oh yeah... easy to gain 12 pounds and lose muscle!  On top of the sexy goddess I was already feeling like, add in weight gain to it all. 

But through it all, I'm still lucky.  I haven't been sick once.  The only other side effect I've had is chemo brain, which I think I mentioned already, but with chemo brain, who the hell knows.  I never remember a damn thing anymore, unless I write it down.  That is SO frustrating. 

Just still trying to take things day by day.  Its all I can do. 

With the mess of the weekend, I realized that I do have good people in my corner.  Its confusing to me still, because I have had people tell me "please let me know if there is anything I can do" when I was told I was too demanding for doing just that. 

I've had people tell me "thank you for telling me what you need, because it gives me a way to help.  I wouldn't know what you needed otherwise."

I guess its all just a matter of perspective.  Funny part, these are people who read the same damn email I sent out! 

During this time, and especially with the way this past weekend effected me, to the extent it effected me, I know that I really need to be more careful with what I am allowing into my life.  I have the control as to who and what I allow in.  And I need to protect that right now.

Limiting stress and remaining as positive as I can will make a difference in how the chemo side effects hit me and how I recover.  Having negative energy in my life will NOT help me right now.  Not at all.  Stress, put downs, negative energy... not things I can have around me.

With recovery and chemo, I need positive and supportive energy in my life.  I am going to focus on that, who has that and who around me will continue to support me through this journey. 

cancer has already made me realize that I need to re-evaluate my life. What do I want to do with the rest of my life? What direction do I want to do in?  And now I'm adding to that, who will be in life going forward?  What relations will continue and what relationships are no longer healthy for me? 

This weekend helped me.  It reminded me that I NEED to control the relationship and influences I allow in my life.  And that I have the power to control that. 

The Saturday morning email will remain a very difficult thing for me.  It is still too close and too raw to not bring tears to my eyes reading it, or even thinking about it.  It was hurtful and nothing will change my mind that this very smart woman did not very carefully choose her words as she did.  It was not written from a good place.  As smart as she is, it came from a place of lashing out.  Nothing will change my mind of that. 

At some point, and only for myself, I hope to be able to find a way to find the ability to forgive her for that.  I'm not there yet.  And that is only for me, not for her.  I don't want to hold onto those feelings.  I need to let it go.  Again, still too close and too raw to get there.  I'm not at a place where I can wish her well.  More at the place of "karma is a bitch and you'll get what you get.  Thanks for being a great friend." 

I know someday I will be able to let it go and have forgiveness.  That's different than forgetting.  I will never forget it.  I will never be friends with her again.  But I will, at some point, release my anger against her for her cruelty towards me with her spiteful and hurtful words.

URGH!  This wasn't supposed to be about that!  Obviously I'm not over it yet.  It will take time to get there.  Lots of time, I think.  The closer someone is to you, the more they are able to hurt you.  She was close.  Very close.  So that hurt is that much more. 

Hmm... side effects....

I guess that's all I wanted to say on that! 

I still haven't mentioned my fall birthday!  That's for another day and another blog post.... but I'm not doing a big 40th in 2014.  I'm not waiting.  Being 38 has sucked.  Wrist surgery within a couple of weeks after my birthday then the wonderful world of cancer since. 

NOPE!  I'm doing a big ass 39th birthday!  The whole 9 yards!  Renting a hall, and everything!  No gifts will be allowed, but people can fell free to make donations to breast cancer organizations  instead.  Hmm... maybe I can put that on the invite.  Lots to plan for, but I have 6 months.  :) 

So wait, early September... big ASS 39th birthday bash for me! 

Chemo #3

SO SO tired today.  I only got poked 3 times today, so that was a step in the right direction.  It it went much more smoothly than the last 2 did, so that was good too.  This was the first chemo treatment Jim wasn't at.  My friend Melanie who I have somehow known for 20 years (how is that even possible?) drove down last night to stay over.  We kicked Jim onto the sofa and her and I had girl time chatting and catching up before we fell asleep. 

Today was nice to hang out with her all day, although she cannot sit still.  While I was in the shower, she emptied the trash and took it out, emptied the dishwasher, put away all the dishes and took the dirty dishes into the dishwasher.  I didn't want her to work, I just hadn't gotten around to doing all of it yet.  My bad.  I should have known better with her.  She's more OCD than me!  But I love her!

She held my hand each time I needed a needle and chatted with me to get my mind off of it.  She complained to my nurse Ashley about the other nurse who did the IV.  Melanie (and me too) did NOT like that nurse.  I wasn't vocal about it.  Melanie didn't hold back. Said that nurse had no bedside manner.  Knowing I don't like needles, that nurse should talk about it step by step what she's doing and with each new IV attempt. 

Here is me and Melanie at chemo today. 

When I got home, I feel asleep, SO quickly.  It just wipes me out.  Right now I can't lift my head up.  And I don't feel great.  But we'll see how I am doing later. 






Yesterday I did my photo shoot with the photographer.  She has posted a couple of pictures already on Facebook.  It was so much fun. 

 
I do NOT have a poker face.  My emotions are on my face.  In the black dress, I felt good.  I love that dress and  I love how it fits me.  I felt good in that.  You can see that on my face.  Head up, shoulders back, smiling, happy and strong.  I really like this picture of me. 

 
In the picture with the pink turban, I was thinking about the weekend.  That I needed to find a way to move past it, but about how hurt I was.  Looking at the picture, that is the look I can see in my eyes, even while trying to put a smile on my face.  A wistful, lost, sad, tiny hint of a smile. 






I can't wait to see the rest of the pictures and I can't wait to try it again.

Since Sunday, I have heard from so many incredible and wonderful people.  All echoed the same thing.  To let them know if I need anything at all, whenever.  I understand that they many not be available or able to help as would be most helpful for me but they were clear that they do want to be asked and want me to feel safe and comfortable reaching out for support.  When I need something. 

Its nice to know that people do care and are okay if that is when I reach out. 

Funny, a post on Facebook about the turban picture from Andrea.... "Love this.... SO much emotion in your eyes. Just stunning!" Yup... tons of emotion.  My weekend emotions.

But today is a new day... chemo day, time with Melanie, visit from Christine, seeing 2 of the photos from yesterday.  Had a great conversation with my parents and with Jim's mom.  They all thanked me for the St. Patty's cookies I sent to them.  Jim's mom thought it was sweet of me to think of others like that while I'm going through so much right now.  I love his mom! 

I love that Jim makes me laugh all the time, even in this.   He's an incredible guy.  He thought Melanie was a keeper after she was doing cleaning around the house today! 

My days are ups and downs.  All over the place.  Some better than others some really really down.  Today was up and that was good. 

Tomorrow I will be tired and slow moving and might feel very sick, hopefully not.  I have to go back to the hospital for a shot to boost my immune system.  I'm hoping to meet a couple of friends for lunch before that, nearby, if I am feeling up to it.  That will be a last minute decision.  I typically think I can do a lot the day after chemo, up until the day after chemo! 

But today was a good day, even being chemo day, so I'm going with that one!

Always a Struggle

I'm still struggling after the weekend.  Between the 2 emails, from Saturday morning and Sunday afternoon, I was in a horrible downward spiral.  Spinning out of control, afraid to reach out to anyone for help after being told I only communicate when I need something.  After that, how could I ask anyone for help?  Why would I?  It was so hard to ask in the first place and that was the reaction.  Why would I do it again? 

After writing here and posting on Facebook, the support I got was incredible.  People from 20+ years ago, good friends, family and even people I never met! (Thank you Nancy!  I know you get it and that means SO much!)  It was so nice to have to have people reach out like that and be supportive and understanding.  I needed that so much and I am so grateful for it. 

My emotions are on a roller coaster.  Chemo isn't fun.  Breast cancer isn't a picnic.  Am I angry?  Yes.  How can I not be angry?  I HAVE to be angry.  This is after all called "Fighting cancer" isn't it?  Shouldn't I be angry? 

And this weekend after the email that cut like a knife, (Cut and paste so there is NO confusion)  "You're only communicating with people when you want something from them."  How could I reach out again and ask for help when I was SOBBING?  I had already.  To someone I thought was a very good friend, and I was kicked in the face. 

Am I demanding? 

I know when I physically feel my best.  I know what times of day work.  I also know when I am emotionally at my worst.  That's when I specifically asked for help, for company.  Is that being demanding?  If so, then yeah, I guess I am. 

And then, am I offensive?  I put people off.  And people are afraid of my "wrath". 

Now, even thinking about it all, I'm still hurt and I'm angry that someone would send me such a hurtful hateful email.  I read what I had said prior to that.  I took a few things out so it isn't too specific.  Although at this point, this person has now told our entire group about this, and based on what has been said to me, I'm sure it was in much detail.  I have been doing my best to NOT put her out there, even though she does not have that same respect for me.

Part of my email...
*********************************************************************************

I'm not saying any of this to bitch and it isn't to make you or anyone else feel bad. I'm just being honest about how I have been feeling about it. Its just been really hard. Its hard for me to reach out to people. Jim's at work all day and I'm home unless I have an appointment. He still has to have his release and he goes to the gym 3 nights a week. I'm still home. A few people have popped over to visit. Laura works from home and a couple of times she's come over with her laptop, working next to me, but just so I have some company. Its great cuz it breaks up my day.

A few other people have popped over now and again too which is nice.

I don't know.. it could be just everything piling on. Chemo fatigue hitting me. Losing my hair. Feeling out of sorts with chemo brain. Not living my old life anymore... having a new normal now. and feeling like I have lost more with the people in my life too. 

At the same time reaching out... I don't want to feel like a burden to anyone and I don't want pity. I want my old life that I can't have anymore and I want the relationships I used to have. I know that they have changed but its still hard. I don't know... I'm not sure I'm explaining it clearly. Lost that too. Chemo brain f'ing sucks. SO f'ing frustrating. All of it. But again... my new f'ing normal.
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SO after sending that and hearing that I'm demanding, I only communicate when I want something and I guilt people into things... that sucked!  That was so cutting.  That was intentionally choosing words.. YOU YOU YOU did this and do this. 

I specifically said HOW hard it is to reach out to people.  I said how bad I was feeling and even from reading it again, I sound fucking depressed.  And in the response I get, she tells me "You're only communicating with people when you want something from them."   Yeah, I see how I could somehow misunderstand that and how there is any possible way to NOT take that as a malicious attack. 

But I am trying SO hard to focus on the positives.  I am SO grateful for what people do.

I'm not sure how what I bitch here, what I puke out of my head onto the keyboard can be taken any other way. I clearly write out, I have crazy shit in my head.  If I don't put it here, it stays in my head.  Um, panic attack anyone?  I don't think so. SO writing here is helpful for me.  It gets that out of my head.  If you don't like it, you don't like my tone or you are offended, don't fucking read it. 

I'm not asking anyone to read this.  I am doing this so the emotions that stay in my head are manageable.  I don't want these emotions in my head. 

But this is cancer.  It isn't pretty.  Its scary.  If I don't do something, I  WILL DIE.  SO yeah, I have STRONG emotions about it.  I get scared.  I get angry.  I get fucking pissed off.  I get sad and hysterical. 

At the same time, I am also happy and grateful and blessed. 

Grateful?  Yes.  I have reconnected with some incredible friends from many many years ago. And I am so happy for that!  I have been able to spend time with people when I wouldn't have been able to do that.  I have met new people, in person and online, that I never would have met otherwise. 

My Brazilian friend?  I love her.  Her and I share this incredible bond now.  We were both diagnosed around the same time.  She started with chemo, then had surgery while I was the opposite.  We talked each other through our steps in this journey.  We talk through email now every single day.  I never would have her incredible friendship without this in my life. 

I am given a chance to really consider what I want to do with the rest of my life.  What do I want to be when I grow up?  I have been lucky enough to meet some amazing people in a strange twist, one after another, who are currently working in the field that I ultimately would like to go into.  A field I knew I wanted to go into but now even more, and more defined. 

My relationship with my AMAZING boyfriend isn't perfect by any means, but I have seen even more than I knew before, what an incredible man he is.  I am so grateful for him, his love, his support, encouragement and how he has been by my side through all of this without question.  I love him more than I knew it was possible to love and whatever the future happens to hold, nothing will change my respect for him. 

I am grateful for every card I have on my kitchen island.  Once I clean off the cards, I put them into a basket, also on the island, which is now overflowing! 

And I have said ALL of this before (am I really always that angry like people tell me?  I'm guessing that haven't read the highs as well as the lows). 

I feel like I have a new purpose to work to get legislation changed in Massachusetts for other women to not have to go through an aggressive cancer diagnosis like I did.  Mine could have been discovered 16 months earlier.  Yes, that makes me angry, but I'm using that anger as a focus to make change. 

One other thing that I am grateful for, even with this whole nightmare weekend, I'm grateful for the opportunity to re-evaluate my life.  What direction do I want my future to go?  What do I need to do to get there? 

And right now, what do I need to do and what is best for me to get through the next year of treatments and recovery? 

I know that I need to be in the most positive place I can be, with good support and energy around me.  I also know that means I need to re-evaluate WHO I allow into my life.  I cannot have stress or anxiety welcome into my life. That's not healthy on a good day, forget about going through chemo.  People that bring that, they are no longer welcome. 

I got many emails and messages since yesterday, one from a very dear and old friend... as in how long we have known each other.  I'm older than her anyway!  And she's right (yes, you can smile... I'm admitting it, you are right!) 

So it sounds like you have couple of friends who are struggling with understanding how you are being affected by oh I dunno, fighting for your life! Nothing big ya know. I am really sorry that your friends have let you down. Hurts worse when you are hurting so much already. I don't want to keep picking at this wound, so I'm just going to say that it seems like maybe you need to re-evaluate you friendships, what they mean, are they really more acquaintances, vs your in my corner when things get rough.

Sad part is, I thought this was an my corner when things got rough sort of friend.  Now I know I was wrong, big time. 

Being angry is easier.  It doesn't hurt as much.  It doesn't leave me sobbing for hours, afraid to pick up the phone to call out and reach out for help.... all I could hear in my head was " You're only communicating with people when you want something from them."   Hysterical sobbing, I was AFRAID to reach out for help.  If I hear back to back from 2 people that I am demanding, afraid of my wrath, and only when I want something? 

The one thing I needed most was a friend.  That's what I wanted when I originally reached out.  Which is SO hard for me to do in the first place.  And the reaction I got hurt SO much.  SO MUCH. 

I'm so grateful for my friend Tracie who came over yesterday.  I needed that more than I can possibly express.  There are not words to describe how much that meant to me and how much I needed that time. 

Although now, I'm not so sure it was for me!  :)  As she walked in, she asked where her boyfriend was.  I think some people come to visit now so they can see Rocco and not me!  Laura admitted it anyway! 

But seriously... Tracie has hung out a few times.  We've gotten lunch, hung out, she was with me when I got my wigs.  It was a day I was afraid of, the first time trying on wigs.  But Tracie was great.  She made it fun.  I know she is an amazing friend.  She has plenty on her plate too, not all good.  I get that and the fact that she makes time, to connect with me through all of that means SO much to me. 

I'm not saying I am expecting people to give me all their free time.  I'm not expecting much.  But I was hoping to still be able to see my friends.  Laura works from home and has some flexibility.  I am shocked that she's able to come over and work from here as much as she does.  I don't expect it, but I LOVE it.  Even if she's working the entire time, sitting next to me on the sofa.... having someone here is great. 

Friends that live in NH or north or west of Boston... NOT an easy ride to come visit me.  The fact that so many have is amazing and SO much appreciated.  THANK YOU! 

Chemo brain has me foggy and unfocused.  I'm not really comfortable driving at night or even where I'm not familiar during the day. I have NO focus, even with my ADD pills!  I'm all over the place now.  Driving?  I have to REALLY focus hard.  So where I don't know or at night?  Not easy and I'm just not comfortable with it. 

That's why I asked for people to come here.  To drive to my house.  And it hurts that by me asking that, I'm seen as being demanding.  When I'm most upset, in my darkest place emotionally, when I'm not comfortable driving, asking for friends to help me get through that is taken as me being demanding.  And that sucks. 

I don't ask for help.  I hate asking for help.  HATE it.  HATE.  So doing it?  That was SO hard.  Maybe I didn't do it right.  I don't know.  I don't know how to do it.  Asking for help is painful for me.  That means I can't do it.  I'm needy.  I'm dependant on others.  I can't take care of myself.  Asking for help?  Admitting that?

And finally getting strength and courage to do it. 

You're only communicating with people when you want something from them.

Those words will forever echo in my mind. 

And since then, since I said how much that email hurt me, I have heard nothing.  Not one apology for how upset that email made me.  For sending me into shaking sobs.  Nothing.  Not one word. 

If it wasn't intentional, if it wasn't lashing out at me... YOU YOU YOU.... if it wasn't meant to be hurtful, or malicious, then why nothing since?

If I found out that something I did or said to someone was taken in such a hard way when I had no malicious intent, I would IMMEDIATELY apologize for hurting that person, especially if it was someone I cared about. 

I heard nothing.  Not a word. 

Not malicious?  Not meant to be hurtful?  Not lashing out? 

Am I angry?  I'd rather be angry than crying again.  Who wants to be hurt?  It doesn't feel good.  My reaction is get angry.  It feels better.  So I'm going to stick with my anger. 

Today someone (who was among those told about this whole thing) told me that maybe things will calm down and her and I can talk. 

No, we can't.  When I said I was done, I mean, I am done.  I need to limit what I choose to expose myself to.  I won't see violent movies or anything that makes me tense up.  Why would I choose to invite this relationship back into my life? 

I need my energy for chemo.  I need to get through radiation.  I need to heal for MONTHS, up to 6 or more, before my next surgery.  I have a LONG road ahead of me.  I can't handle more stress or anxiety or being slammed down again.  I can't knowingly choose to invite that into my life. 

So no.  There will not be a conversation in a week or so.  There will not be any conversation.  I can't do that to myself.  I need to do what is good for me and my health and this relationship is neither. 


For those who have or have not met Jim, here is a pefect example of him and why I love him so much.  I know he doesn't read this.  I try to read to him whatever I write about him, so he at least knows.  I read him the little part here about him. 

He's getting ready to go out.  He said, "I'm upset."  I said, "What? Why?" 

His answer, "You don't think we have a perfect relationship." 

Gotta love him.  Then he is putting on his coat, demanding me said, "Give me a kiss".  He said, "No, we don't have a perfect relationship." 

Yup, I do, gotta love him!  :) 

SO okay, I'll change it.  We don't have a perfect relationship by any means, but him and our relationship are absolutely perfect for me.  And I love him!  Mr. Off The Charts!  :) 


(and fyi, he's okay with this part now!)  :)

Pink Isn't Pretty

The color for breast cancer is pink.  That doesn't mean anything about it is pretty.  It isn't.  I'm not going to apologize for anything I write in this blog.  What I write is real, its raw, its how I feel and it can be ugly. 

I have so many emotions that run through my head.  So many ups and downs, within minutes.  Someone I "met" online said she feels like she's bipolar dealing with it.  It sucks.  This blog, writing here, this is where I get it out of my head and how I try to stop the spinning spirals sending me into panic attacks. 

I'm not going to apologize if I offend people for what I write here.  This blog is about me and getting this shit out of my head.  I warn people that I don't hold back here.  No one has to read this.  This is how I help myself by getting things out of my head. 

Yesterday sucked.  It hurt so much.  And today I find out more people have been put off by my tone in emails and on this blog. 

This is breast cancer.  It isn't pretty just because its fucking pink.  Its real.  It impacts every single facet of my life.  Everything.  I can't even say from the moment I wake up because its before that.  Its in my sleep, my lack of sleep and in my dreams.  It is now in every relationship, every decision, and in the back of my mind for everything I do every day.  This is my new normal and this has become my life. 

I have lost my breasts and got expanders.  I have no feeling in my chest.  I lost my hair.  And I have lost relationships. 

Recently I have heard that people give what they can give.  And I understand that, believe that and accept that.  But I think there is a lot more to it than just that.  I think people don't know what to do. 

When a serious crisis occurs to someone and others want to help, like in any serious illness, surgery or worse, people want to be there, help and do something.  And they give what they can give.  But often times, people just don't KNOW what they can do, what would be helpful or wanted.  I know that happens with me.  When I tell someone, please let me know if there is anything at all I can do, I truly mean that.  PLEASE let me know!  I don't know what to do and I want to help, but I just don't know how or what to do, so please give me direction and let me know what is it that I can do. 

That is the place I come from. 

The past few weeks have been so hard.  Jim is working ALL the time.  Its after 9pm on a Sunday night and Jim has been working the entire day.  We spoke for less than 15 minutes today.  That's been the norm for the past couple of weeks. 

My chemo treatments are hitting me harder and harder, each one with stronger reaction than the last.  I miss so much of my life and feel so on my own, floundering. 

Last week I lost my hair.  All week the little shaved pieces keep falling out.  I see patches in my head. 

I feel alone. I am overwhelmed. I tried to ask for help.  I tried to reach out to people I thought I could reach out to.  I asked friends for help.  For company.  For visits.  For when I'm most lonely but feeling my best. 

I know what times of day I'm best.  Jim has one weeknight that he's home.  With how little time I actually see him, I would rather not have company that night and maybe get a chance to spend some time with him.  Mornings?  I'm SO slow to get going.  Who knows on a given morning how I'm doing.  But evenings work and I have energy too.  That's a good time of day for me.  Really good time of day for me with the treatments I'm going through. 

I am so deeply, overwhelming hurt and crushed by the email I received yesterday morning.  And because this was from someone who meant so much to me as a very good friend, it really had the power to cut like a knife to my core.  It was a crushing blow when I was already teetering on the edge.  It pushed me over, spiraling. 

Every time I think about that and then an email today, I don't even know anymore.  I think at this point I'm just numb.  Numb to it all. 

I'm sick of crying.  I'm sick of feeling like this. 

People tell me they want to help and to ask for anything.  I have such an unbelievably hard time asking for help.  SUCH a hard time.  But at one of the darkest points, I try.  I reach out to friends and ask for help.  And I'm shot down and slapped in the face.  At my absolute most vulnerable. 

I have not been this down or this dark since the first several weeks of first being diagnosed.  And this sucks. 

After the emails today, I knew I was a mess.  I wanted so much to reach out to people.  I knew it would have been the best thing for me.  But now I'm afraid to do that.  I only communicate when I need something is what I was told.  When I'm so down and depressed, sobbing to the point I can barely breathe... isn't that when I should be able to reach out? 

But now I can't.  Now I'm afraid to ask for anything again.  Because I'm offensive, demanding and create my own isolation.  So now that isolation is going to get worse for me. 

I really don't even know what to do anymore.  I don't know how to get through this anymore.  Damned if I do and damned if I don't.  I ask for my friends help because it is what I need right now.  But I'm selfish bitch for doing it? 

Jim needs a break is what I heard before.  Yeah, I try to not put it all on him.  Which is why I got up and went into the bedroom to cry today.  He is so overwhelmed with work.  He doesn't need to deal with another day of me in tears and out of control sobbing. 

I tried to reach out to my friends. 

The same people have been there again and again for me.  And you know who you are.  You know that I hear from you and appreciate all that you do. 

I thought I had other people I could reach out to.  Now I know I was wrong and how wrong I was. 

Reaching out like that, asking for help, for support.... that's not a mistake I will make again.  Ever.  I tried.  I reached out.  I was shot down HARD.  When I was fighting to stay afloat, I got a kick to the head, to push me deep under.  And I fighting to not drown. 

I still wonder what it is I'm fighting for.  If I'm such a selfish, offensive bitch?  From a close friend? 

I've lost so much with all of this and I just keep losing more and more.  And that sucks. 

Now, I just want to let the friends and family out there that have been there and do want to help, I'm not asking for anything anymore.  I'm not going to reach out.  I'll go with the advice I was given.  People do what they can do and give what they can give. 

I can't handle being shot down by people I love and trust again.  I just can't take another blow.  I've had too many hits, one after another over the past few months.  I can't take anymore from people who are close to me.  I can't handle anymore. 

If I am going to keep fighting cancer, I need to have a fight in me.  I am only 25% through chemo.  Then I have 6 weeks of radiation.  I'll still have more surgeries after that.  This isn't a 2013 thing.  I will still be doing the recovery well over a year from now.  This isn't a quick thing and move on. 

If I am going to have anything in me to fight, I need to have focus and positive energy around me.  Right now, that is the last thing I am feeling.  So I am not reaching out anymore.  I can't handle the backlash.  I can't handle anymore. 

For friends and family that do want to help and do want to be there for me and have been there for me,  Thank you.  You're support have been what has gotten me through this.  Without you, I would not have gotten this far. 

Things as simple as messages, cards, texts, calls and visits mean the absolute world to me.  You haven't forgotten me.  You give me strength and energy to keep going.  As much as I need that to continue in this, I am not sure I can ask again.  I'm really afraid now to reach out and ask for anything, if something as simple as please come see me on the nights I am home alone and at my darkest is received the way it was.  I won't ask again. 

I appreciate everything that everyone has done.  I can't say that enough.  Even the friends who have now disappeared or who are insulted by me asking for company... I appreciate what they did up until now. 

But I'm not asking for me.  I'll do my best to put one wary foot in front of the other and hope that the wonderful supportive people in my life will continue to be there. 

I'm really looking forward to seeing my friend Melanie tomorrow night.  She's coming down from NH and spending the night to take me to chemo on Tuesday.  I received a wonderful offer of help from someone I talked to today about the email.... she's going to cover the March 26th chemo for me, and I didn't ask her, she just offered. (if you read this THANK YOU! You mean the absolute world to me and your support has made such an amazing difference to me and I love you!)

I have 4 chemo treatments between April and May. 
April 9th, Karla
April 23rd Jill S
May 7th, Jenn B
May 21st, Jen O

There's my reminder.  I can't reach out again.  That's what started this.  If I don't hear back, I'll figure out a back up plan and find someone else to take me, even if I have to ask Jim to take another day off of work.   

I'm hoping that I get out of this dark place that I'm in right now and I really wish that many things this weekend didn't happen.  It hurt too much and hit too hard.  I have learned my lesson and now I know... don't ask for help and don't reach out to friends when you are down.  The disappointment it too much to take after being slapped down.  And I just can't handle going through that again. 

Not now.  Not during chemo.  Not when my emotions have me off on 500 feet drops with hot flashes tossed in for good measure.  Not bald.  Not when my self-esteem and confidence is at the lowest it has ever been in my entire life.  I can't take it and I am NOT strong enough to deal with it.  Not by any stretch of any imagination. 

If I offended you, I really don't care.  I'm a bitch like that, only thinking about myself and my well being on my fucking blog.  You don't like it or me or my attitude, then stop reading my blog.