Recovering

I've been trying to recover the past week but have been SO tired!  Every day I'm exhausted.  Today is the first day I haven't napped and at 8pm, I'm crashing. 

Otherwise, I haven't been doing much.  Recovery was MUCH more than I expected, including needing help to get in and out of bed.  One good thing was that the neuropathy got better while I was taking pain meds for my surgery.  Now that I stopped taking pain meds, my feet have been REALLY bothering me.  I did get a call from my health insurance that the prescription has been approved and its now ready at CVS.  Jim is going to pick it up for me tomorrow because its at the one right by his work. 

I've been trying to go to small walks with Rocco almost every day since surgery.  We've both gotten much stronger each day.  Last Wednesday I took 2 naps and every other day I came home and immediately took a nap.  I think Sunday was the first day I only took one but like I said, no nap today (even though I'm falling asleep as I'm typing this!)

Jim brought Rocco to the vet on Friday for a checkup.  It was late because of everything I've been through.  In June of 2012, Rocco weighed 112 pounds.  On Friday?  86!!  He's lost 26 pounds in 16 months.  Weird part, that's about what I've gained!!  :(

After months and months of trying to get Jim to get another dog, I've made progress!!  We might be close!  YAY!  I found her online about a month ago but he still wasn't super interested. She's another American Bulldog, 3 years old. 

A couple of weeks ago Jim was online looking for a dog, but he wanted a Bull Terrier, which isn't my top choice.  I kept pulling her up online.  She's so cute! 

When I was at the hospital for my surgery, getting poked 11 times for my IV, crying and telling Jim that I couldn't do it and couldn't take anymore pokes, he said we could do whatever I wanted to do that weekend... just trying to get my mind off of the missed IV attempts.  I said I wanted to go see her at the shelter! 

Well, I didn't wait for him.  Last Wednesday I went to meet her.  That night when Jim was home from work, we went back and he met her.  She was laying down on her side and letting me rub her belly while we were hanging out.  This past weekend he started finishing up the backyard fence to make it complete.  He knows how much I want her. 

So in two days, I'm bringing Rocco to the shelter to have the two dogs meet.  If all goes well, we'll set up a time with Jim there too to make sure, at least I think that's how it will go. 

If it doesn't go well, if they don't get along, that will unfortunately be it.  But Jim is already calling her my dog and saying things about us having 2 dogs in the house.  It seems like in his mind, we already have her!  YAY!!

So here she is... how cute is this face????

Oopha What? And what a week!

October has been pretty busy believe it or not.  I am still recovering from everything, but taking baby steps at getting better.  It has been hard to find the right balance between being active and moving around and being too active and pushing too much. 

In the past two weeks, I've been at the state house twice to lobby for our density notification bill.  I've been working on making connections and establishing relationships with legislators and their offices.  So far so good!  Today while I'm on the sofa, between napping, my plan is to send out more follow up emails and to try to set up appointments for when I next head in. 

Last Sunday on the 6th, I did end up doing the Making Strides walk.  My friend Melissa met me in town and I took a bus set up by another group, someone I "met" online.  It was nice to meet her in person but I was so grateful she invited me along on the bus! 

Somehow with only a weeks notice, I still raised $700 online and I have one check being sent in for $50 and another check was sent in, but I'm not sure how much for.  SO, over $750 in a week was donated by friends and family.  I was just touched by the support.  It really meant so much to me. 

The day of the walk, it was cold, raw and rainy.  I was pretty chilled by the whole thing.  And for some reason, we did the 5 mile walk, but with all the walking around before and after?  It was closer to 7 miles when all was said and done.  I was so tired and sore that night.  Jim was great and had lunch cooked when I walked in the door and served it to me while I was on the recliner.  How great is that?

Monday I slept most of the day.  I had signed up for a new exercise class that night with my friend Jen and still went but went SO easy while I was there.  It was a barre fitness class, sort of yoga, pilates and ballet all rolled into one.  I couldn't do everything they were doing in class, but I tried to do as much as I could.  WOW, between walking on Sunday then the class on Monday?  Yeah, I was sore.

Tuesday of last week I was back at the state house.  More walking.  I wore a pedometer but put it on when I met Marian at her office behind the state house.  With it on, I walked 4 miles, and it was probably another mile before I put it on.  BUT, I made so many great connections during the day and it was fun. 

That night my feet were throbbing and in so much pain from the neuropathy and I was completely exhausted.  That was me pushing things too far.  The Sunday walk, Monday night barre class and then the state house on Tuesday?  Yeah, too much!  I was very whinny that night and so uncomfortable.

On Wednesday, I had a doctor appointment follow up with my medical oncologist.  My blood work looked good and she wanted to check in with me on how I'm doing with Tamoxifen, the estrogen blocker that I have been on for 2 months.  She knows that I have side effects from it, including mood swings and hot flashes.  Normal.  JOY!  And I'm already on one medication that they use for the side effects.  Might end up having the dosage increased to help.  But she wanted to see how my appointment went the following day. 

Either way, she said I would need time to adjust.  The Tamoxifen was blocking hormones and impacting my body.  Having surgery (which I did yesterday), would have even stronger effects on my body and increase the same side effects with a much greater intensity.  Again, my body would need time to adjust.  I guess Jim will need that too, especially if the mood swings increase!

The only time I left the house on Wednesday was for that one doctor appointment.  Then I came home and went back to bed! 

Thursday I was still exhausted and recovering from Sun-Tues.  But I had yet another doctor appointment.  This one was with a neuro-oncologist and a new doctor in my list.  He was really nice and pretty down to earth.  I liked him.  After a few tests he did, yup, I have neuropathy, and more so in my feet.  Okay, no surprises there. 

He was really encouraging with it all.  He said that I had nerve damage from when I went through chemo and had the pain I got from Taxol.  But since the pain isn't like that now, it has already gotten better and he's very optimistic that I will make a full or near full recovery.  It will just take time.  There is nothing that can be done to speed up the process. 

The only thing that can be done is to manage the pain associated with neuropathy.  He said there is pads I could use for my feet with medication in them, but without insurance he said, "They are very expensive."  My insurance company requires prior authorization on them and limits the amount that I can use (which is less than what he is prescribing for me).  So right now I'm waiting on that.

If I can't get that, he did give me a prescription for something else, which doesn't work as well, but he said would have some sort of effect to maybe help a little.  It is more numbing than anything else, and I just don't see how that would be helpful.  Pain or numbness?  Hmm...

He doesn't want to give me a prescription to handle the pain, because it would be more something that would impact how my brain reacts to and responds to it.  I'm already on 3 other medications that impact brain function.  He's afraid that if I am on another one, it would make me lethargic and increase mood swings even more than they already are. 

After that appointment on Thursday, again, I was back at home and on the sofa.  I was exhausted STILL!  The beginning of the week had really knocked me for a loop!

Friday was a little busier.  I was up early with Jim, then a nurse called from the hospital for my pre-op evaluation.  She scheduled me for blood work to be done a few hours later too.  So I was out the door a little after 10 to head to get my blood work done.  Between the pre-op blood work, the tests needed from my medical oncologist, the neuro-oncologist and then blood work my primary care doctor had requested as well, I ended up having 6 vials of blood taken! And I hate needles too!

After blood work, I had about an hour to kill before I had a massage scheduled at the cancer center.  I stopped at Derby Street Shops for a bracelet I wanted at Brighton.  It supports breast cancer research and awareness.  http://www.brighton.com/product/bracelets/36956-96333/power-of-pink-power-of-pink-2013-bracelet

Isn't this SO pretty!

 

 

After that stop, I still had over 45 minutes to kill.  I stopped at Marshall's and believe it or not, got some Christmas gifts.  Jim's niece is now pretty much done so another one checked off the list!  And after looking at the list again today, I'm more than half way done.  I need something else for my brother and for my dad, 3 gift certificates, and then Jim and my grandfather, who both have their birthday on Dec 22nd too!  SO bday and xmas.  But I know what I'm getting Jim, just need to order everything for him.  

My massage was great, then I went home and napped before Jim got home.  We went out to dinner, back to our regular 99.  Always really good to see them there.  

When we got home, I had a meltdown.  That was a big one too.  Nerves about knowing I had surgery on Monday.  I had been trying so hard to keep busy and keep my mind off of things and not be worried or stressed, but it all hit me and I lost it.  Jim tries so hard but I know he can only take so much.  

Saturday we had plans to go to the corn maze with my friend Jen and her fiance Jeff.  We went through it much faster than I thought we would, even after our first attempt brought us right back to the start.  Marini Farm in Ipswich was a great little place.  The maze was a blast and they had so many cute activities for kids, plus a great little shop with local farm fresh produce and baked goods.  I got some maple syrup, honey, and monkey bread!  LOVE monkey bread!

Here are a couple of pictures from the day: 

Jim and me at their photo op spot. 

Jen and Jeff posing too.

Outside the store, I bumped into an old friend.  :)

Jen and Jeff had plans closer to Ipswich, so we had taken 2 cars up there.  After the farm, Jim and I stopped at the computer store in Cambridge for him to look at a new laptop (his died a few months ago and he really needs a new one to get work done more effectively at home.)  

We were starving by then and on the way home stopped at The Chateau for dinner.  For the first time ever, I was a little disappointed.  When we got there, I joked at how many of the different locations I had eaten at, about half!  This was probably the worst overall experience I had at any of them ever.  An oven alarm was BLARING for most of the time we were there, into the dining room.  I heard another table complain and their waitress said there was nothing she could do (I think it was from a fryer or something, so it was on and off the whole time).  

Our waitress was horrible.  We never saw her, she never checked on us and when we were done, we waited for well over 10 minutes for the bill.  Both of us had food to take home.  I had some fettuccine left and more than half of my eggplant parm which was SO good.  When I could FINALLY eat again on Monday night, no eggplant parm!  :(  She only gave me the fettuccine!  Even with the horrible service, I wasn't going to complain, but when I saw she didn't give me most of the eggplant I said I wanted and that we paid for?  Yeah, sent a nastygram message to the restaurant.  Just sucks, cuz the food is really really good, portions huge and typically the service is good.  She ruined the whole experience.

 

Unfortunately, that was supposed to be a great meal for me, my last meal for 48 hours!  We headed home after that and just hung out.  I did okay for the most part on Saturday night, even though it was still on my mind.  

 

Sunday was a good morning.  Jim went out food shopping and then he was working in the back office.  I got a bunch of things done around the house, finished laundry and did some cleaning.  I tried to keep myself busy, since I wasn't able to eat anything.  Clear liquid diet all day with the "bowel prep".  I will not go into details of that, but it is not a fun way to spend a Sunday.  Lets just say I needed to keep close to the bathroom all day. 

 

In the afternoon, just before the Patriots game was going to start, Jim let out Rocco.  He was out for a while and when he came back, he said friends of his from out of town were in town unexpectedly.  They wanted to get together with Jim for a bit.  Jim hadn't even talked to them in months. 

 

Now with Jim, he NEVER goes out with friends.  He works his ass off all day and is home working as well most nights.  He goes to the gym 3 nights a week most weeks, if he's feeling okay, and that's it.  He works around the house, in the yard, works and goes to the gym.  He NEVER goes out with the guys.  Never. 

 

Well, here were friends he hadn't talked to in months, who wanted to hang out.  Jim has been SO stressed with work and with me.  I knew he needed to go out, let off steam and have fun.  But it was the day before I was having surgery and I was fighting to not freak out with anxiety! 

I told Jim that I wanted him to go, I just really wished it was any other weekend.  I asked him how long he thought he'd be out, and he said with driving back and forth, no more than 3 hours max.  Okay, I could handle that.  I did handle that.  Problem was, he was longer than 3 hours!

By the time they guys called back and were on their way to meet Jim at the sports bar, it was about 5:30.  I guess they got lost on their way, then Jim bumped into guys from his gym too.  He had a really good time out.  At 8:30, I was still doing okay, but shortly after that, not so much.  Out of distractions.  Game was over, my mind was racing and I was starting to freak out. 

Jim didn't call me when he left the bar.  I guess he was driving and by a cop when I had texted him. Twice.  So he couldn't even read it, forget about replying to me.  I called too, but got his voice mail, which pushed me over the edge.  I was sobbing in the message I left for him.  That was while he was in a bad intersection trying to get to the highway to head home. 

He didn't even listen to my message and called me back when he was on the main road.  He was able to calm me down a bit while we talked on the phone and he stayed on the phone with me his entire drive home.  When he got home, he held me in his arms while I was a mess, crying.  I was just scared about having surgery. 

All I could think about was if they found more cancer.  There was a risk of that.  What if they found cancer?  What if I needed chemo again? What if it was bad when they found it?  I was Murphy after all.  What would they find when I had surgery?  Could I handle it??  I knew I couldn't go through cancer and chemo again.  I told Jim on Sunday night, I can't do chemo again.  If there is cancer, I just can't do chemo again. 

He got me calmed down enough to sleep. 

Monday morning he was up pretty early and went to work in the back office.  I stayed in bed and slept in.  We were aiming to leave the house at 9:30 to check in for 10am.  He woke me up at 9:10 and I started flying around getting everything ready, taking a shower and getting dressed in comfy clothes to wear home.  Somehow we managed to check in right at 10am.  Luckily we didn't hit any traffic on the way.

We sat in the waiting room for less than 10 minutes when my name was called.  We headed back to pre-op and I had to change into the wonderful johny and hospital socks, with nothing else on.  Everything else was in my bag.  I met the anesthesiologist, so many nurses, and then my surgeon came by too.  I was doing really well for me.  No melt downs, no panic attacks, no nothing.

Then it was time for them to give me an IV.  I warned them, I don't do well with needles.  They could only use my left arm because of my risk of lymphedema on my right. 

Nurse #1 poked me once and my vein rolled when I tensed up.  She said she'd have someone from anesthesia do it.  Nurse #2 came in and I had my arm under the warming blanket to help the veins prep, a few pokes didn't work.

That's when they remembered that I wasn't allowed to even drink anything that morning along with not eating and the bowel prep the day before.  I was insanely dehydrated and my veins were effected.  Not cooperating. 

By nurse #3, I crying.  She warned me that the one she was doing would hurt.  Wonderful!  Put he palm of your hand up in front of your face.  Flex your hand backwards and look at the veins right there at the crease of your wrist.  That's where she was going.  With a child needle.  That ultimately worked to get me the drugs to go under, but while I was out, they swapped it out for another IV. 

I counted my arm around the bruises this morning.  I got 10 pokes yesterday.  Yeah, I was sobbing there.  I f'ing HATE needles and I was awake for 9 IV attempts!  NOT fun!  Five of them along are along the top of my hand.  Two around my wrist.  One on the inside of my forearm and one outside and the last (which was the first attempt) was in the crease of my elbow.  That just sucked.

Because it took so long to get a good IV in, I was put under pretty much immediately.  Said by to Jim in the hallway when they were wheeling me to the operating room and Jim was walking next to me to go to the waiting room.  I don't remember anything after that. 

I think Jim was there when I work up from surgery.  I was pretty out of it and groggy.  My surgeon, the gynecologic oncologist, talked to Jim while I was still out to tell him how things went.  Just my ovaries and fallopian tubes were taken.  No cancer was found so nothing else needed to come out.  All went well and as she had expected. 

The surgery was called:
Prophylactic Bilateral Salpingo-Oopherectomy

What does that mean?  
Prophylactic is preventative.  I don't have cancer but now I won't get cancer in my ovaries or fallopian tubes because I don't have them anymore.

Bilateral is both sides, both ovaries and both fallopian tubes.

Salpingo is the fallopian tubes

Oopher is the ovaries

ectomy means removal of

SO I had preventative surgery to remove both ovaries and both fallopian tubes. 

If more cancer was found, I would have needed my uterus removed and some lymph nodes too.  Luckily that didn't happen.  I still have a risk of ovarian but now back to the normal general female population risk of 1.7% instead of the 30% risk that I was on Sunday. 

When I woke up, I was sore.  I am still sore.  My insides were literally ripped out of me.  I can't lift more than 10 pounds for a month.  Laundry?  HA HA!  Oh well.  If Jim carries it, I can do it. 

Right now moving in general hurts.  They gave me pain meds which I am taking, but I'm also trying to take it easy.  I have ice on my belly and that helps.  I needed Jim to help me get out of bed this morning.  Bending down sucks.  I dropped my phone and struggled to pick it up off the floor. 

I was laying down yesterday and however I was to help my belly, hurt my shoulder.  And my throat is SO dry still from the tube they had down my throat during surgery. 

Overall, I should be a little better by tomorrow.  I'm not allowed to shower or drive until tomorrow night.  Hopefully I will heal up from this quickly.  But I'm still just really tired. 

So that was my week.  Now I'm recovering. 

This coming week will be very very quiet for me.  A friend asked me when I'd be up for a visit and I know her work schedule is very flexible.  I asked if she wanted to meet for lunch on Thursday.  I know I'll be going stir crazy by then and I'll be allowed to drive then too, so it would be nice. 

Friday I am supposed to be going to a breast cancer in women under 40 event through Dana Farber.  Depends on how I'm feeling cuz that could be a longer day.  But this weekend we don't really have much going on.  I just want to take Rocco to the dog park and I found a place that is doing photos for families and dogs at an outdoor space.  The sitting fee includes a disk of the photos and the donation goes to a dog shelter nearby.  I also want to go to that dog shelter cuz there is an American Bulldog female that I want to see.  Still working on Jim getting a second dog!  Rocco needs a friend!

But that's my entire week.  Quiet.  Resting.  Recovering. 

I got great messages from friends and family and that made me feel great.  I appreciate it so much. 

Day by day and slowly trying to make progress.  That's all I can do.

Making Strides

I had a really good weekend with Jim.  We spent some good time connecting this weekend.  He was working on painting a tractor he has (practicing for when he paints the car he's fixing up) and I finally got around to painting the wicker chairs I got for the entryway.  Of course, after they dried I realized I need one more coat.  SO another trip to Home Depot for some more spray paint and then I can finish that up.  Maybe Thursday.

This week is going to be busy, but I've still been tried.  I think I've been trying to fight a cold & maybe an ear infection too.  I don't know.  But I've upped the Vitamin C and been trying to get extra rest. 

I was supposed to get back to kickboxing this morning, meeting my friend Marlene for a class, then we were getting lunch after.  Class was 10-11 and I need to leave at 9:30 to get there on time, with parking and lights and all that.  I woke up at 9:17am.  Yup, missed the class!  I messaged Marlene I wasn't making it, then laid back down under my cozy blanket.  That's been my whole day and its now after 2pm. 

Tonight I have to go to an event in Boston where I'm going to try to network a little bit for the Density Bill.  Then I'm going back in tomorrow to meet with some legislatures as well.  Tomorrow is going to be TOUGH.  Fingers crossed I make it through the day okay.  I'm worried with the fatigue and with how my feet are still bothering me.  We'll see how it goes. 

The rest of the week, I'll be taking it pretty easy.  Nothing really going on again until Sunday. 

I made a decision about a week ago for this coming Sunday.  I'm doing the Making Strides breast cancer walk with the American cancer Society, in Boston.  I'm taking a bus with dozens of others into Boston where I'm meeting a friend of mine who is going to do the walk with me.  I'm really looking forward to it.  Between networking, meeting other survivors and being part of the month of awareness (aka Pink-Tober), it is a nice way to spend the first Sunday of the month.

The other night I realized something as well.  Last year I found the lump on the Sunday of Columbus Day weekend.  It was Sunday, October 7th.  That was the day that started all of this.  Even though it was 3 weeks later before I got the official diagnosis, October 7th was the day I knew it was breast cancer.  I just knew. 

The walk this Sunday is on October 6th.  The last day of this year for me.  Doing this walk that day is sort of coming full circle for me.  A way to sort of mark all of this as done.  I'm hoping that I can start to move on a little more easily after this, emotionally and physically. 

The year hasn't been easy.  Not in any way shape or form.  I've been on ups and downs the whole year.  So many things have changed.  I will never be who I was Sunday morning October 7, 2012.  Never.  She's gone.  I can't go back there, I can only move forward. 

I think of the relationship Jim and I had that day.  Amazing how much has changed.  It is unbelievable the journey we have been on and are continuing on. 

Then there are all the other relationships in my life.  The friends from my past who reached out so wonderfully and showed me so much support and love.  It has meant the world to me.  The friends who have been in my life and were here a year ago and who just stepped up and showed me so much about what friendship is.  The women I didn't know a year ago, who I have met through this year, who have been incredible to me.  People I will never forget and some friends who will be with me forever. 

Those are the positives with the relationship changes.  The sad part is with the negative relationship changes.  Like I said, I'm not who I was a year ago.  I can't go back there.  I have changed too much.  And some of the relationships I had then have also gotten to the point that I can't go back to them.  A few ended, several shifted and drifted on and apart.  Some I'm really sad about. 

There were some friends I really thought were true deep friendships.  Women I talked to while they were in tears over different things in their lives.  Women I tried to support with the ups and downs and good and bad of life.  But the relationships didn't pan out that way.  The friendships weren't made of what I thought they were made of.  They weren't the lifetime friendships I thought they were. 

It makes me sad to think of that.  It isn't easy to go through a life threatening disease, major surgery and horrific treatment and then try to reach out to people to only have them knock you down or disappear.  That's a really hard pill to swallow.  When I needed friends the most, some people really did disappoint me and let me down. 

Maybe they thought they were being good friends in their own way. They weren't, but maybe that's what they thought.  In my darkest hours, it was hard to see anything past the hurt, disappointment and heartbreak of being let down.  I still struggle with some of it.  I'm still hurt and I'm still disappointed. 

I did my best to try to reach out to a few who fall into those categories, the shifted relationships, or the disappearing ones.  I can only try to reach out so much.  It isn't worth continuing to put myself out to be ignored more and more.  I DO have great people in my life and my time is better spent with those who are hear for me and who do care about me then spending it reaching out to those who don't care and who disappeared when I needed friends the most, who continue to not respond to me. 

I've done the best that I can to release the anger that I had with 2 specific people.  One person, I have been able to let go of the anger.  I'm still extremely hurt, but I am no longer angry with her and her actions and words towards me.  I didn't want to continue to carry that with me.  I'm almost to the point of complete forgiveness to her as well.  Not for her, but for me to completely let it go.  Not all the way there, but almost. 

The other person?  That was much more deliberate, thought out and intentionally bitter and nasty.  As much as I would like to say I am not angry, that's not true.  I am.  I'm angry that someone would be THAT intentionally nasty to me while I was in the middle of a depression during chemo.  I mean, seriously?  It's just fucked up!

I'm not as angry as I was, but I still get a twinge when I think about everything.  I end up just shaking my head and saying things like, "what a fucking bitch" or another word that starts with a "C" is actually more appropriate for how I feel about her.  Not in an angry way, more of a matter of fact way.  She's just a C, that's all.  

But I have great people in my life.  And that makes me happy.  They make me happy.  I have a dog that loves to cuddle (who now cries when he can't snuggle with me!) and a boyfriend who wraps his arms around me at night.  I have friends who have shown me what real friendship is all about.  I have an incredible family who has shown so much support, in my family and in Jim's family. 

I'm blessed to have these amazing people in my life.  I'm so grateful to be able to really feel so loved and cared for by so many people. I will never take these people for granted in my life.  I hope everyone knows how unbelievably special they are all to me. 

So I try to focus on that.  Focus on the good, the love, support and the friendships in my life.  My confidence is slowly starting to improve and even being tired and having some pain, I'm happy.  For the first time in a very very long time, I am really happy.  Things are on the right track for me and moving in the right direction.  I'm keeping the positive relationships in my life and letting go of anything and anyone who doesn't bring that into my life. 

Even though I still have down days or times, they are fewer and further between and each one lasting shorter than the last.  The happier times are more frequent now.  I'm laughing more and having more fun in simple things.  I have more joy now and I missed that for a long time. 

I'm looking forward to this weekend, to the walk on Sunday.  It will be a really great experience for me.  This isn't something I ever really thought would be part of my life, but it is and this is who I am now.  Breast cancer will forever be part of my history and my life.  I will always have that little twinge in the back of my mind when things happen... is it cancer?  Is it a recurrence?  Will I have to go through this all over again?  But I'm doing my best to keep those questions and worries buried down so the questions are harder to hear and have less impact. 

Otherwise.... Sunday, Making Strides.  Fundraising for this cause.  I only registered for this on Sunday night, with a week to fundraise for it.  I didn't want to pressure people too much and I have only posted it a couple of times in the past couple of days on Facebook.  Because of that, I took out their default goal of $2500 and only set it for $500.  I figured that was still reaching, with starting only 1 week before the walk. 

In under 48 hours, my page is up to $390!  That is just insane!  I'm blown away at the generosity of people who are contributing to it.  I am SO grateful for the support too.  I just can't believe it though.  It is just so nice. 

If anyone wants to make a contribution to my page, here is the link:
http://main.acsevents.org/goto/JOrsillo


Feel free to make any contribution you'd like.  I'd love to give back and stop this disease.  That's why I'm working on this bill and this is why I want to do this walk.

Up and Down, Again and Again

I can't believe it has been almost 2 weeks since I posted last.  Been busy!

The whole week after the hearing, I was SO busy.  I was online, messaging people, getting the Facebook page going, and trying to get more and more support from everyone for House Bill 1050.  I really think it is just so important. 

Somehow it has all moved along.  I've now been put in charge of the Facebook page.  And that's not a problem for me.  But I just have to make sure I stay on top of it to keep the reach going.  Plus, I got my list of things I'm supposed to work on as well for the next few weeks. 

I did pretty well for the few days after the hearing, energy-wise anyway.  But by the weekend, I CRASHED!  I drove up to my parents house last Saturday to drop something off and ended up taking a 2 hour nap while I was there!  Crazy. 

This whole week has been more of that.  Not sure what is going on.  I've been sleeping in, napping, and getting full nights of sleep each night.  Tuesday night I got 8 hours of sleep and was up with Jim when he got up around 6:30am.  I was back to sleep by 8am and slept until 1pm!  Yeah, I was supposed to go into Boston for a meeting with the team that day.  Didn't happen.  I was out of it all afternoon too. 

Thursday I slept in as well.  My friend Jennifer (LOVE YOU!) came down as my chauffeur for the day.  Nice little 90 minute drive each way to take me to one appointment!  I'm lucky for her friendship.  She's amazing.  :)

BUT... Thursday wasn't easy.  Jennifer took the ride for me while I had another test done.  Another biopsy.  This one is for cervical cancer.  Joy. 

The gynecologic oncologist wants to make sure she has everything done and ready for my surgery on Columbus Day.  Although when she started the test, she didn't see any abnormal cells, she decided to do a biopsy anyway.  If anything come back, she can do it all while I'm in surgery and already under anesthesia.  Luckily, the biopsy wasn't as bad as I had expected.  It wasn't as deep as they typically are (since she didn't see anything), so it wasn't as much tissue taken.  I was still uncomfortable all night and into Friday, but not like it would have been for a typical biopsy.

After the biopsy, she went over everything for the surgery on Columbus Day... 16 days.  WOW.  Scary.  And yes, I am scared.  Another freakin surgery.  General anesthesia.  She said the incision will be in my belly button, but she will have 2 smaller incisions on one side and that is where the camera will be.  The 2 smaller ones are 5mm, and the belly button one is 11mm.  Okay, I can do this.

I'm doing my best to not freak out.  I want to stay positive and not automatically go to the 5% chance that she'll find cancer when she does this surgery.  In the case that she does, she'll need to do more biopsies in surrounding tissue as well as testing the lymph nodes.  And whatever else could have cancer, she'll take that too. 

IF there is cancer, IF it is aggressive (grade 3), even if it is didn't spread to anything (including not spread to lymph nodes), I would need chemo again.  That is the one thing that keeps going over and over in my mind... just as my hair looks like I did this on purpose, just as I'm starting to feel a teeny tiny bit better about myself, I could need to start chemo again.  Wonderful! 

Not going there in my mind is not easy.  I'm trying, but it isn't easy.  Keeping busy has helped, plus its in a different month.  Even though it is 2 weeks from Monday, my calendar is still on September, so nothing in October is high on my list.  Not sure what I'll do next week on Tuesday when it flips, but I'll deal with that then.

What else? 

Mostly same old same old.  Mostly fatigue, where I'm sleeping 12 hours a day.  Still have neuropathy too.  Hoping that gets better soon. 

Jim is amazing.  He's been making a huge noticeable effort and has been a huge comfort to me as I stressed about this recent biopsy, waiting on the results and then the upcoming surgery.  I really could not have gotten through all of this if I didn't have him in my life.  I'm lucky for that. 

So now moving on and moving ahead.  Hoping for less fatigue.  Hoping for less neuropathy.  Hoping to have energy to exercise, to work out and to hopefully start to lose weight too! 

Feeling like I have a purpose to put into the density bill has been really helpful.  I've done well with that, when I have the energy to put into it. 

I've come a very long way in the past few weeks, as far as my self esteem.  I'm doing so much better than I was just one month ago.  I'm positive that I can keep that going, especially as I get more energy and try to exercise more too.

Friends... I'm still just so lucky.  I have great people.  A HUGE thank you to all of you who have helped me so much.  Now I'm just trying to pay it forward somehow. 

Up on Beacon Hill

Today was a long day.  It was hearing day. I am completely and utterly exhausted right now from the commute in and out of Boston, so this is going to have to be short and mostly pasting.

Here is a picture of the group who is behind the bill.





This is what I posted on Facebook tonight, which includes my personal story.



I NEED YOUR HELP!!!

Even though this is long, please read my VERY personal information on how you can make a difference and literally help save lives. All women, your mothers, daughter, sisters, cousins, aunts, friends…. we all need your help.

Today I testified at the State House in front of the Health Care & Finance Committee for a hearing on a breast density bill. Before I was diagnosed with breast cancer, I had never heard of dense breast tissue & I was unaware of my risks. I don’t want any other woman to go through what I went through.

I thought I was doing everything right. But I didn’t know to ask about my breast density and it isn’t standard practice of care for radiologists to share that with women. So they don’t pass along this vital and life altering information.

House bill 1050 was drafted by Ellen Kelliher and her colleagues. Her husband Damian Musello testified today to give Ellen’s story. She had her annual mammograms and all were clear. She got her “happy-grams” after each. Ellen died on July 1st of this year from breast cancer at the age of 58. Damian testified today because Ellen is not here to share her story herself.

I am including the testimony I gave today, my story. No tears fell while I testified but I had to pause several times when I became choked up. It can still be hard to say, “I have breast cancer”, even now, close to 1 year from when I first found the lump.

PLEASE contact your state representatives and senators and URGE them to support House Bill 1050. Representative Denise Provost sponsored this bill. Please direct your representatives and senators to her office for any questions they may have.

Representative Provost’s aide, Pooja Phaltankar, advised that PERSONAL stories make the biggest impact. PLEASE use your own story or that of someone you love, or even my story. Tell your representatives and senators that this is what, you, your loved one or even me, YOUR FRIEND JULIE, went through and it isn’t right. The radiologists who are the experts with reading the mammogram should share the risks they are very aware of with the women who are trusting their LIVES to this one test.

We trust that by having a clear mammogram, we do not have cancer. That is NOT true. A clear mammogram only tells you that no cancer was seen on the mammogram. It doesn’t tell you what is NOT seen.

SO here is my personal story. Please share as little or as much as you would like with your representatives.

To find your representative or senator, please click on this link:
https://malegislature.gov/People

Thank you. On behalf of me, on behalf of the other women pushing for this bill, on behalf of Damion and Ellen, and on behalf of all the women this will impact. Thank you.

(testimony given on 9/17/13)

My name is Julie Orsillo and I am here to speak in support of House Bill 1050.

Many people do not remember the exact date Hurricane Sandy hit the northeast last year. I do. That is a day I will never be able to forget. That day, October 29th 2012, was the day I was told I had breast cancer.

At 35 years old, in May of 2011, I was sent for a baseline mammogram and ultrasound on my left breast after my gynecologist thought she felt something. My left side was fine, but the mammogram found micro-calcifications on my right. No ultrasound was done on my right breast, but due to the calcifications, they wanted to watch me for 2 years, with mammograms every 6 months to monitor me for any changes in the size or quantity of the calcifications. My next two mammograms, in December of 2011 and June of 2012 were both clear as well.

I didn't know anything about dense tissue. I was never advised anything regarding dense tissue, or risk factors. I was told that micro-calcifications could be normal.

Last Columbus Day weekend, while lying in bed, I found a lump in my right breast. That week I saw my gynecologist who sent me for another mammogram and ultrasound. That mammogram was clear, but the ultrasound was questionable. That was on October 19th; 10 days before Hurricane Sandy.

After my diagnosis, when I saw my gynecologist she kept asking, "What did I miss?" She was telling me that I had done everything right. I never missed an annual. I never missed the 6 month mammograms. I was a healthy BMI.

SHE didn't miss anything; the mammogram did.

A week after my diagnosis, I had a breast MRI. That showed additional areas as questionable.

I decided upon a bilateral mastectomy. During my surgery on January 10th of this year, it was discovered that I had 3 tumors in total and one lymph node also tested positive for cancer. Due to that, all lymph nodes were taken from that area.

I was lucky that I found the lump when I did. I had stage 2b breast cancer and grade 3- which is most aggressive. The largest of the 3 tumors was 2.5cm. Had I not found it when I did, it would have continued to grow and to spread. No signs of cancer appeared on my mammogram 10 days before my diagnosis on October 29th. My next mammogram was already scheduled for early December, less than 2 months later. It is fair to assume that cancer would not have shown up on that either. That would have allowed the cancer to continue to grow and spread for another 6 months, until I would have had another mammogram, in June of 2013.
I wish I had known I had dense breast tissue, that dense breast tissue is a risk factor for breast cancer, and that other diagnostic imaging available was 16 months prior to me finding a lump on my own when I had my baseline mammogram.

After my bilateral mastectomy in January, I have had 8 rounds of chemotherapy and 28 radiation treatments. My last day of work was on January 9th and I have been out of work on disability since. I have been dealing with neuropathy in my hands and feet as a result of chemotherapy and dealing with that has been so difficult. I have trouble walking in the morning. The weakness in my feet makes stairs difficult throughout the day and near impossible by evenings. I have had some lymphedema symptoms and swelling due to the lymph nodes being removed, which is why I need to wear a sleeve and gauntlet. If the cancer had been found earlier, it would not have spread to my lymph nodes.

This hair style isn’t a choice, it is courtesy of chemotherapy. This time last year, I had waist long, straight blonde hair that I loved. It was part of my identity. I needed to cut that off before chemotherapy started. I would not have been able to emotionally handle seeing it fall out piece by piece.

I ran the Boston Marathon in 2011. I was a running coach and taught fitness classes. I worked out 6 days a week between running, kickboxing, swimming, weight lifting and yoga.

Now I have two scars across my chest where my nipples used to be. I have lost full range of motion in my right shoulder. My hair is gone. I have gained 25 pounds with the steroids and other drugs during chemotherapy in addition to no longer having the energy to work out.

I don’t have children and with chemotherapy, I am infertile. If I ever choose to have a child, my only hope rests in 7 embryos currently frozen, which costs me close to $100 each month since insurance only covered 3 months of freezing.

If I had been aware of density issues and risks when I had my first baseline mammogram in June of 2011, 16 months prior to my diagnosis, I could have had a different surgery. I would not have had lymph nodes test positive for cancer. I may not have needed chemotherapy, or radiation. My medical insurance company would have been billed substantially less than the over $300,000 they were billed, for costs associated with my care and treatment since January 1st of this year alone.

I urge you to support House Bill 1050. This is essential for the health of women in this commonwealth. Allow women to receive information we need to make decisions for our health.

Dense & more

I feel like a kid the night before the first day of school.  I'm nervous!  But I'm wired too.  My dress is hung up, jewelry out, purse cleaned out and organized- including a notebook, pens, and Lara Bars.  But I'm nervous.

Tomorrow I am testifying at a hearing in front of the Health Care & Finance Committee at the State House for a bill on breast density notification.  I am giving my story, about my experience. I had 4 mammograms in 16 months which were all clear, including one 10 days before my diagnosis. 

I have dense breast tissue, which shows up white on a mammogram.  So does cancer.  No one told me that dense tissue was a high risk.  No one told me that it could mask cancer. No one told me I could have a clear mammogram and still have breast cancer.  No one told me that there were other diagnostic imaging tests which would have been better able to detect cancer. 

This bill is to educate women and provide them with information necessary to make informed decisions regarding their health.  Its about breast density. 

I'm nervous about testifying.  I typed it out, read it at least 10 times, and continued to work on it.  My testimony is supposed to be 3 minutes long.  HA HA HA!  I read it tonight for the shortest version and that was 4 1/2 minutes.  Granted, reading it in my living room to the dog, sitting on the sofa in yoga pants, and reading it at the state house, at a committee hearing.  I know I talk fast to begin with, but when I'm nervous it is SO much worse.  My problem will be slowing it down enough to be understood! 

Other than that?

The birthday week was fun.  After my birthday dinner with Jim, I had dinner with my mom and the girls in her family on Tuesday... including 2 aunts and 2 cousins.  Thursday night I had dinner with my friend Jen.

Friday I was exhausted after a physical with my PCP but I did make a stop at my office to say hi.  I got the flu shot and I guess I was due for my tetanus shot which now has whooping cough added to it.  It could have been the busy week or the 2 shots, I don't know which, but I was exhausted when I got home. 

I think I was home Friday around 2:45.  I know I was asleep by 3:30.  Jim woke me up when he got home from work at 5 and again at 6 to see if I wanted to get dinner.  He went out without me and I was back to sleep until he got home just before 8pm.  And that night?  I STILL slept another 9 hours!  After a 4+ hour nap! 

On Saturday we took Rocco to a dog park and he had a blast playing at the beach.  Of course it was MUD at the water's edge, so he needed a bath as soon as we got home.  He hates baths!  But he is so clean now. 

Sunday I was out with Jen again and we went to a tour of a chocolate factory.  That was a BLAST.  But again, I got home and slept for a while.

And up to today... I had a bone density test.  And another nap this afternoon.  But I did get my testimony done and ready tonight too. 

Things with Jim and me seem to be going okay as of right now. But he can only take so much, and I'm a raging crazy bitch on Tamoxifen.  INSANE!  Who do you know who cries hysterically because she is crying??  ME!

Last night I walked downstairs to feed the cats.  I forgot to put on a light until I got to the bottom of the stairs.  Well, my feet are in so much pain at the end of the day and stairs suck.  I started crying because I forgot the light and it hurt too much to go back up the stairs to turn on the light.  Then I was crying more because I was crying.  It just sucks.

I think am crying pretty much every single day at this point, and guess what?  That is NORMAL!  URGH!  Normal?  To cry over nothing??  Yup. Wonderful fucking Tamoxifen. 

Tonight I was flipping out when I tried to have a protein shake.  My hands hurt trying to shake the shaker while I was holding down the cover, but the cover wouldn't stay closed without being held.  I started yelling and screaming about it.  And then Jim took the shaker for me and did it. 

Its something every single day.  And it sucks. 

Sometimes its hard when I think about my life a year ago.  And that has been hitting me a bit more lately too.  It was Columbus Day weekend when I found the lump.  That anniversary is fast approaching. 

It hit more tonight when I was writing up my testimony as well.  I'm not who I was a year ago.  She's gone.  I'm no longer that same person.  I can't go back and I can't be that person again.  The innocence of not having cancer is gone.  I'll never be that person again. 

I'm a new me and working on the wonderful phrase, "a new normal", whatever the fuck that is.  But its my life.  And I'm still trying to figure it all out, who I am, what I want and where I'm going.

I miss things from my old life.  I miss friends from my old life who seem to have dropped off the face of the earth.  I still feel left out of things.  Facebook can be hard when I see friends I had all together without me, especially from the people I don't hear from anymore, who tell me that they are busy with this or that.  But not with other friends I guess... just with me. 

It is hard to move on from that, from the hurt and disappointment in people.  I've done my best to let go of the anger I had.  I've even tried to reach out to a few people or respond to others.  It sucks when I hear crickets back.  Disappointing. 

When others are SO encouraging and supportive, its almost like a slap in the face when the people I considered good friends have just disappeared. I try to remember that how people act is about them, who they are and what they are going through in their lives.  It isn't about me.  Its about them.  But that doesn't make the hurt any easier to handle.  Toss in mood swings and outburst and fucking Tamoxifen.... oh yeah, its a FUN fucking ride.

Well, now that its after 11pm and I have to get up early to be out the door around 7:30am... time for me to go to bed!  Fingers crossed tomorrow goes well!!

New Beginnings

I wasn't really planning to write this morning, because I don't know how much time I have and my thoughts are still too random.  But here goes!

Yesterday was my birthday.  My 39th birthday.  I have never been this happy to be another year older!  38 sucked and there is really no other way to say it.  I had surgery on my wrist on September 27th last year.  A week and a half later I found the lump and on October 29th I got the call.  Year from hell.

But now, 38 is DONE!  I closed the door on it and have moved on to 39.  YAY!

Last night I did a journaling exercise I did years ago with a now retired life coach I worked with.  Joan used this for New Year's but my birthday is the start of a new year for me.  Plus, with my birthday being the same time of year that school starts up, it is full of newness for me.  Here is the link to Joan's coaching page if anyone has interest in what I used to journal.  http://www.joancollinscoach.com/cb1206.html

Since I started doing this MANY years ago, I have been naming my year.  It gives the year a theme and intention.  I don't think (or don't remember anyway) I did this for 2013.  It was right before my surgery. I could have.  I might have even written here about it!  Gotta love chemo brain!

For my 39th birthday, I named my 39th year.  This is the year of new beginnings.  I'm cancer free and and done with active treatment.  This is the start of a healthier life for me.  Jim and I have had many issues, but we have decided to work on things and to give it another chance, all in for both of us.  We are having a new beginning in our relationship as well. 

I'm still trying to figure out what I want to be when I grow up, but I am looking into going back to school part time and finishing up my degree (depending on financial aide and all of the costs associated with it) and moving into the health and human services field.  It is important for me to give back and help other women who are or will be where I was.  I want to pass along when I have learned. 

Within that, I want to use what I know as a fitness instructor, become a certified personal trainer, and also start other trainings.  I want to become a certified yoga instructor, take nutrition classes and become a life coach as well.  I think with the combination of all of that I will have so many tools available for a whole health perspective, along with my own personal experiences. 

This past year I lost a lot.  Not only my breasts with the bilateral mastectomy or my hair with chemo, but my self esteem and confidence as well.  I lost my sense of adventure.  I lost my fearlessness.  I also lost a few friendships in the past year and others which were close, are no longer that close. 

But, as I have heard so many others say, there are so many good things that somehow come along with a cancer diagnosis. And I would like to go through so many of those now.

1. I never knew how selfless and giving people could be.  I have been unbelievable touched by the outpouring of support I have received from so many people over the past year.  The entire island in our kitchen was covered with cards and flowers I have received.  One of the flower arrangements I received came in a white basket.  I put all the cards in that one basket but I can barely fit anymore in there now.  They all mean so much to me and helped me get through SO much.  Thank you all for that. 

2. My friend Carol in Brazil.  We "met" online on WhatNext, which is basically Facebook for cancer.  An online social media site for people with cancer or caregivers.  We both joined around the same time, shortly after were were diagnosed last fall.  I had 2 rounds of IVF, then surgery in early January, followed by chemo and radiation.  Carol started chemo before Christmas last year.  She had a few months of that, then surgery, then more chemo, then radiation. 

We just GOT what the other was going through.  She understood my fears.  She knew how hard it was to lose my hair.  She knew the struggles with relationships, with depression, anxiety, fatigue.  She just understood because she was going through it all as well. 

Carol prepped me for my start of chemo and gave me so many tips and helpful hints.  I passed along information to her about surgery and let her know things she could do to help.  We sent each other care packages, Boston to Brazil. 

Carol gave me strength and courage to forge on when I didn't have any of my own.  We have never met in person, but she is an amazing friend who I will cherish forever.  I cannot wait to meet her in person and we are already working on planning that within the next year.  Meeting her is on my list of 40 things to do before I'm 40!

3. Reconnecting and re-establishing old friendships.  Without my cancer diagnosis, I don't know if we would have reached out to each other to reconnect as we have, so for that, I am so grateful. The cards, texts, messages, visits, words or support and encouragement... it has all meant so much to me.  To not have really spoke, other than a few Facebook messages here and there, in pretty much 7-10 years, these friends from my past have been so unbelievably amazing with the love and support they have provided me with.  I treasure the moments and our friendships.  Please know how much you and our friendships mean to me. 

4.  Meeting so many new people. 

Everyone at Dana Farber would never have been in my life if it wasn't for breast cancer.  They are wonderful people and I love the joy and happiness that they all bring.  I have had so many laughs with the wonderful people I have come into contact with. 

I won the Boudoir Photo Shoot in January pretty much because of my story.  I met Lauren, the photographer, Stephanie the hair stylist, MaryJo the makeup artist and Tricia the stylist.  I've happened to bump into MaryJo and Stephanie a few times and Lauren has been so kind to have done 2 additional photo sessions with me.  Those photos showed me strength I didn't realize I had.  The Boudoir Party was a wonderful night with great friends, days before my surgery. 

Strangers in public.  I have been out bald for months.  It is amazing the conversations that can start!  I've met so many other club members.... the cancer club or chemo club or breast cancer club.  We all know the look and see something of ourselves in each other.  We share tips and advice and pass along information or organizations that we found helpful ourselves.  We support each other in a way that non-club members just can't. 

5. I had purple hair!  I never would have had the courage to have purple hair before!  So after cutting it short and not loving the loss of my long hair, I dyed it purple.  And LOVED it.  I rocked the purple hair!  So much so, that I'm actually considering going purple again.  Who knows?  Why not!  It was so much fun.  I loved it. 

6.  Friendships I had were strengthened.  Some friends I've had for many many years, and other newer friendships, were strengthened this year.  So many provided me with so much support and encouragement and conversation and distractions.  I loved the breakfasts, lunches, sitting on the sofa with me and Rocco, getting out and doing something different (like a bike ride, brunch in Cambridge, Tomato Bash), going for walks, text message or email check ins, chemo visits, company at home, cards... ALL of it.  WOW! 

There are too many people who fall into this category to mention all of you, but I have to mention a few specifically. 

My Boudoir Party girls.... each of you have been so wonderful to me this entire year.  You have all had so much going on in your own lives. 

Tracie, getting engaged, selling your condo & getting married (yes, all that in 2013!) plus other personal things, it was a busy year for you.  You made so much time for me and even though you may really have visited just to see Rocco, your visits always made such a difference to me.  Grabbing lunch, heading out somewhere like the beach or just hanging on the sofa and catching up, they were all so great.  Thank you.

Christine... working INSANE hours, going to school at night, volunteering, then finding replacement roommates and moving!  WOW!  But every other Tuesday you popped by for a chemo visit with your little happy smiling face.  Love you my bucket list friend!  Thanks for SUP lesson, the Tomato Bash and the trampolines at SkyZone.  I'm willing to try that indoor rock climbing place, surfing, or trying snowboarding again this winter (but the only other time I tried in 2008, I broke my wrist!) and I still want to do outdoor ice skating, so Frog Pond?  I love your sense of adventure and confidence.  Thank you for your friendship and joy. 

Jennifer, in between a vacation, work trips, your engagement, working on your new house, and changing jobs, you were amazing to me!  Specifically picking my last chemo treatment to be my chemo buddy so you could celebrate with me. I loved that!  ALL of the cards that you sent me mean so much.  And wow, did you do TOO much.  The breakfast box, and OMG those brownies!!  Hmm... I might need to order some for me now!  :)  The visits you have made, the emails, Paint Nite, SUP, yoga... just to name a few things!  Thank you! 

I know how lucky I am to have the 3 of you as friends in my life and you mean SO much to me. 

Michelle, my friend who tries so hard to get me on the phone when I'm not really a phone person!  I'm sorry we have hard a harder time connecting but thank you for not giving up on me.  You have done so much for me!  You were hear right after surgery (ready to kick the visiting nurse's ASS for having me in tears!).  You took me the day after my first chemo for my first shot.  You walked in your sneakers in the snow with me, so I could get outside and get a tiny bit of exercise, even though you wanted me tied down so I could rest.  I love you.  I know you have had a lot on your plate lately and I am sorry I haven't been as good a friend to you as you have been to me.  I love you! 

Melanie.... love you honey.  Please never ever think you haven't done enough.  OMG you have done too much.  With 2 girls in elementary school, a son who just started college, moving, working full-time, a dog and don't forget your husband!  You have SO much.  I love the visits and having you and Aly coming down to see me and Rocco (I know it isn't all about me!) when you could.  You have done way too much with gifts.  It isn't necessary.  I love you and our friendship for (WOW!) over 20 years. You are an amazing person and you give way too much of yourself.  I love you!

Jennifer, thank you.  Another one with a husband, dog, young daughter and who moved!  Talk about a busy life!  But you always made time. I loved every one of the cards you sent, especially the pickle birthday card in March.  You have no idea how many people I have told about that card!  You have been so kind to me and your friendship means more to me than I can express.  The advice you have given me, all the times you have listened to me vent and you compassionately responded, even if you didn't agree with me.  You are one of the blessings that cancer has brought back into my life. 

Melissa, another blessing from the past.  Thank you.  I can be horrible about making plans, especially with the schedule of doctor appointments and fatigue tossed in.  But you never gave up on me or getting together.  You understood the few times I needed to cancel, even at the last minute.  And you have been wonderful about scheduling more time to get together.  You have listened to me vent about life and so many insane things that have happened this year and never let time pass with texts or messages.  Thank you so much for bringing our friendship back into my life.

There are so many others as well... thank you all SO much for everything you have brought into my life.  You haven't made me feel like I was sick or a cancer patient or a burden in anyway.  You helped me feel alive and like ME and like the world has been okay, even with me being on pause for a while!

7.  Family.  My extended family with so many cousins... a guess a benefit of a big family.  SO many of the cards in that white basket are from family checking in.  Cousin Judy with your crazy text messages and "electronic tuck ins" at night, thank you!  Just getting your little "XOXO" message with nothing else means more to me than you know, knowing that I wasn't forgotten is huge!

In addition to my family support is Jim's family.  My last day of radiation, last day of active treatment overall, I not only got a congratulations call from Jim's mom, but from her sister as well!  His cousin's sent cards and I always had so much support from them all.  His cousin's wife even buzzed the back of my head and around my ears last week to clean up my hair.  We were sitting around talking for close to 2 hours that day!  When in a relationship with someone, you never know what you are going to get with their family.  With Jim, I have received a whole new loving, caring, accepting and supportive family of my own.  They have just brought me right into their circle and I feel so at home with them all.  I'm very lucky to have them in my life and so touched about the support they have provided me with this year.

8.  Jim.  We have been on a roller coaster this year.  We were away for my 38th birthday.  A month later, he asked me to move in.  That was the same weekend I found the lump.  A few weeks later I was diagnosed with breast cancer.

After I got that call, I remember running to our bedroom and collapsing on the bed in tears.  He held me there for hours.  I told him I understood if he wanted to take it back, if he didn't want me to move in with him, if he wanted to break up.  I couldn't walk away from cancer, he could.  He hadn't signed up for that.  I will never forget his answer.

"I'm not walking away from my best friend."

Jim has shown me what true love really is.  He unpacked my mail order meds for me.  He came to almost every doctor appointment I have had.   He gave me the IVF shots I needed every night for weeks.  He held me when I cried.  He took the screams I threw at him.  He was with me at the hospital for surgery.  He emptied the drains twice a day when we got home.  He washed my hair in the sink when I wasn't allowed to shower and helped me hold the drains so I could attempt to shower as best I could with the hand held shower.  He put purple hair dye in my hair, very carefully so he wouldn't stain my scalp.  He buzzed my head as my hair started falling out.  He told me I was beautiful.  He has financially put himself in a spot he wouldn't have otherwise while providing so much financial support for me.  He has tried to make my life as normal as it could be during treatments.  He rubbed my legs and feet for me when the pain from chemo was too much for me.  He fed my cats and scooped their litter box, even though he is allergic to cats, the 4 months I went through chemo and I wasn't able to go near the little box.  He put up with my mood swings and outbursts and the abuse (yes, verbal abuse) that I threw at him.  And he never made me feel that he didn't love me.  Even in the worst of times, when we were fighting, he never ever made me feel like he didn't love me.  I have never doubted his love for me. 

We have had our ups and downs.  cancer takes so much from relationships.  Strong marriages have failed.  Any cracks are exposed.  It isn't easy being someone's caregiver, especially when adjusting to living together at the same time!  But he did it.  And for the most part, he never complained about it. 

He has been my rock.  I never would have made it through this past year if I haven't him, his love and his support.  He can talk me down from a panic attack (again last night), he can make me feel better about myself, even though that is something I should be able to do for myself.  He has picked up the pieces of my shattered self esteem and has loved me.  Through all of my meltdowns and outbursts and craziness, he has been here.  And for those of you who know me, you have NOT seen the craziness in me that Jim has seen during this past year.  Sobbing because chicken is undercooked.  Screaming because of too much chaos in Walmart. Yelling at him because we left the house 15 minutes later than I wanted to.  Shaking and screaming and crying so many times.  Running out of the house in pajamas, in the middle of a full panic attack, because I couldn't breathe and needed air. 

Jim took a beating from me in the past year.  It has NOT been easy on him.  I love him so much and hope to make it up to him in some way.  I want and need him to see how much I love and appreciate him.  I need to make him feel that from me.  He knows that I love him and tells me all the time that he sees that in my eyes, but I need for him to feel the respect and appreciation I have for him and our relationship. 

If things don't work out between him and I, yes, I will be completely devastated.  He means so much to me.  I cannot see my life without him in it.  Everything I picture for my future has him by my side.  He is my partner.  I love him with all I have to give.

But more importantly than me wanting him in my life, I want him to be happy.  I want good things for him and for him to be truly happy.  If that is without me as part of his life, that is something I will have to deal with.  I hope to God it isn't how things end up, but if it is and if he is happier without me, I will manage if I know he is happy.  I will be heartbroken, but I will manage.

SO those are a few of the many many things I am grateful for during my 38th year.  My life has changed completely.  I have learned many many lessons and I have learned so much about so many people, including myself.  My priorities have shifted.  I still have the anxiety that I developed but I am doing my best to live in the moment and enjoy the hear and now.  This single moment will never come again.  Enjoy it!

Surround yourself with people who lift you up and bring you joy.  Life is too short to be torn down and unhappy.  Laugh and have fun!  Do what makes you happy.  Walk barefoot in the grass and smell the roses.  Feel the raindrops on your face.  Watch the sun rise and a new day begin.  Find your passion in life and do it!  Go for it!  Believe in yourself.  Be happy.

I have a wonderful group of people in my life.  My circle of friends is amazing.  They lift me up and support and encourage me.  They believe in me and help me believe in myself.  And they love me, all my faults and cracks and craziness, they love me!

So I'm working on the rest and trusting and believing that things in my life will fall into place and will happen as they should.  I will be where I need to be, when I need to be there. 

There is some reason why this past year was part of my life.  I'm not sure yet what it was, but some day I will figure that out.  It has changed the direction of my life and has given me a renewed purpose.  The friendships that have begun or been reconnected, or strengthened are such a blessing to me.  I am a different person because of the good and the not so good of the past year.  This is now a part of me.

Last week I saw many extended cousins at a wake.  One cousin is being treated for breast cancer at the exact same treatment center location I was treated at (I will be visiting her today during her chemo treatment, like my chemo buddies did for me).  Someone close to her said something to me that touched me.  She told me that my cousin knows what I have gone through in the past year and I have been an inspiration to her and have given her strength, because if I could do it, so could she.

Maybe that was part of why I had to go through this year.  There were lessons I needed to learn in my life, people who needed to come and go in my life and maybe it was a way for me to know how to give back and help others, even if that is just purely because I was in this club before her.

I'm looking forward to all of the possibilities of my 39th year.  Who knows what will happen next.  But as of this moment, I'm hopeful and happy.  I want to hold on to this and believe it and live it and be it.  Fingers crossed!

Wish me luck on all of my new beginnings!!  I wish them to you as well.  :)