Sometimes it is just a little hard to stay super positive with everything.  Toss in the hormones for the fertility thing and its just been rough.  Right now I'm  human pin cushion and look like an addict.  My arms are bruised from having blood taken almost daily.  Forget about my quads!  I had 3 shots last night, 3 this morning and one more tonight. 

Last week they said I'd have my blood work & ultrasound on Sunday and most likely the "trigger" shot on Sunday night.  Sunday afternoon they said the same thing again... more blood work and another ultrasound Monday morning and most likely the trigger shot Monday night. But no!  Increase the dose again (was 225 units, then 450, then as of Thursday it was 525).  Last night and this morning for 600 units each time, plus a 2nd injection as well.

And the 600 units comes in a preloaded pen which does 450 unit max.  So that's the 3 shots last night and this morning. 

After that call yesterday, scheduling today's blood work and ultrasound, my fertility dr called.  My hormone levels are all over the place.  I only have 2 follicles over 10mm and one egg per follicle, max.  He wanted me to be prepared to not have any eggs. 

Then he wanted me to move my surgery date for later in January so I could do another cycle of this then.  Um, no.  I have invasive cells.  I'm not pushing it back to wait even longer!  I've waited long enough. 

And if he was to do another cycle, I need either an IUD or the pill.  I can't take any hormones with cancer cells being hormone positive (and they are watching those levels with the fertility hormone meds) and my body does not accept IUDs.  So... if I have no eggs that make it, that's pretty much it.

Then my ob/gyn office called me back about any birth control options.  Condoms or basically getting my tubes tied.  Two options.  Surgical and they cut the tubes or an office procedure where they put something in to block the tubes and scar tissue grows around it.  That takes 3 months to work. 

The nurse said, well you're having your eggs taken so you won't need your tubes to work anyway. You'll just need your uterus.  Yeah, okay, that makes me feel better. 

Those 2 calls were within 2 hours.  I left work over an hour early, just couldn't take anymore.

I didn't have enough of the medication for the 600 units twice.  In rush hour traffic we had to drive up and back to Waltham to pick up the refill pens.  This time they gave me 4, which is a total of 10 that I got.  My co-pays for those 10 pens plus 2 other injection meds, pills, needles and all the other crap including sharps container was a total of $150. The cost for the 4 pens last night in total?  $5,254!!!  In total, all of it has cost almost $14,000. 

$14,000?  And when I have this done on Thursday I might not have any viable eggs?  Really?  All these shots, night after night?  For nothing?

This is it.  This is my one chance.  I'm not saying that I KNOW I want to have kids.  I'm not saying that at all.  I just want to have a choice at some point. 

So many choices are being taken away from me.  I'm just being told everything to do.  I have no choice.  I don't want more choices just taken.  If I don't have kids, I want that to be MY choice, not because I can't. 

This just sucks. 

Otherwise...  The surgery date was changed.  The plastic surgeon had a cancellation and it got moved up to January 10th.  I'm glad I'm going sooner.  I want all of this out of me.  Plus, the sooner I have surgery, the sooner I recover, the sooner I start chemo and the sooner I'm done. 

Just trying to get my head in a better place.  That has been hard lately.  Its one thing after another, and nothing is easy.  None of it goes smoothly.  None of it.  Its overwhelming and frustrating.  I can't get away from it.

Plus, with the fertility crap, I can't exercise.  I'm home.  Tonight was great!  Out for dinner with a great friend.  SO needed!!!  (Thank you!!)  Trying to keep busy and not just sit home after work has been difficult.  Too much time to sit and think and get in my head.  NOT good for me. 

Tomorrow is low key, then Thursday is the "harvest" to see if all of these shots were worth it.  Other than that, not too much between now and surgery.  HOPEFULLY the surprises are done, but we'll see.  Still need to figure out a few other things, but we'll see. 


OH!  One interesting thing.  With blogspot, it lets me see stats.  I can see how many pageviews by day, week, month or all time, plus by browser or operating system and where the links came from. 

I've had views from Germany, the UK and Netherlands!  In the past week alone I had 2 views from Germany.  Kind of weird.  And just nice to see that many people are actually viewing this. 

This is info from the past month:

Pageviews by Countries

Entry	Pageviews
United States	471
Germany	5
United Kingdom	3
Netherlands	1

 

Spending Spree

Today we were in Kemore by 8am for blood work, then over to ultrasound at 8:15.  Luckily they took me right away.  I already got a call back and things are looking good. 

Tonight shots again at the same dose.  Then I get to go in tomorrow morning for blood work and an 8:15 ultrasound, then most likely a different shot tomorrow night and the "harvest" on Wednesday.  I'll know for sure tomorrow afternoon. 

That's only a day thing and in Lexington. I would be back at work on Thursday.  And FINALLY can start to feel normal and not bloated anymore.  MY GOD this is uncomfortable!


I found a few more books I ended up buying last night on Amazon.  A few good titles:

"Off the Rack: Chronicles of a thirty-something, single, breast cancer survivor."

"Just a Lump in the Road"

"Beauty Pearls for Chemo Girls"


Then I found 2 window decals I ordered.  I'm going to put one on either side of the back window of my hatchback.  Kind of like them both a lot!!

Rough Few Days

Thursday ended up being worse than I thought.  Got there in time to have my blood drawn and I took the 2 meds they said to take while I was waiting.  I needed a full bladder for the procedure, so I drank a full 32 ounce Powerade plus most of a 20 ounce bottle and a large Latte from Dunkin.  Yup, it was full. 

The drugs?  Um, can you say bad mix?  I was HIGH.  Crazy loopy.  Unfortunately that didn't stop the pain.  I got 2 local anesthetics... shots inside my who-ha!  OH MY GOD!  I screamed.  Yup, I did.  Tears pouring down my eyes.  They put an ice pack under my neck and on my forehead before they started.  I still almost passed out. 

Come to find out, even my uterus is bad.  Weird positioning, so getting a normal IUD to stay doesn't work so well.  I need a follow up in 2 weeks to look at the positioning. 

The my actual ultrasound, that was fine.  They upped my meds again and now Jim has to give me 2 shots a night because the "pen" that the drug comes in won't do more than 450 units and now I'm up to 525 units.  Great.  2 shots a night!  Thursday, Friday and Saturday nights. Sunday I have an 8:30am ultrasound in Kenmore, with blood work first.  Good thing I'm not sleeping and typically up at 4am now. 

As far as the fertility drugs and the "harvest", based on the results of the 3 ultrasounds I have already had, the dosages I've been taking, this increase to 525 units and the size and quantity of follicles, my GUESS is that the "harvest" will be Wednesday-Saturday of next week. 

I'm getting a little uncomfortable at this point with some cramping, so I can't wait for this to be done!  I know that the size of my ovaries won't go down right away.  It will still be slow going for the next 2-3 weeks until all is back to normal. 

That was all Thursday.  On to Friday.  New Boobs. 

Well, with my barely B's, even when he was joking about DD's, I know my boyfriend would have been very happy with an increase.  Come to find out, reconstruction implants are a bit different than augmentation implants.  When a "normal" person wants implants, the implant is put in with the existing breast tissue to expand the size.  Not with reconstruction.

First, the mastectomy.  Think of it like a Halloween pumpkin that you are craving.  Because the tumor is so close to my nipple, most likely it cannot be saved (they do nipple sparring mastectomies).  Plus, with the BRCA2 gene, my thoughts are that the more tissue is left, the bigger the chance of a return.  Take it all. 

For the mastectomy the incision is horizontal, several inches across each breast.  They cut an oval to take out the nipple and areola.  Then, like a pumpkin, the breast tissue is basically scooped out and removed.  That's where the breast surgical oncologist is done. 

The plastic surgeon said that her part will take about 1- 1 1/2 hours each side.  She will put the expander in, under my pectoral muscles and every 2 weeks I will need to go in.  She'll use a butterfly needle, like getting blood drawn, to add saline into the expander, slowly filling it and stretching the muscle along the way. 

Once the expanders are full to where they are going to be (time can vary on how long that will take), I will have a second surgery.  She will take out the expanders and put in permanent implants.  At that point, she'll make any other necessary adjustments.  And 3 months after the 2nd surgery is when nipple reconstruction can start. 

Because part of my skin will be removed, there is only so much space to fill the expander.  Only so much room in the "balloon" to fill without making the skin too thin.  I guess its lucky that years ago I had gained weight and got up to over 160 pounds before dropping over 30 pounds.  I was up to a C cup for a short time, which stretched it out a bit. 

Per the plastic surgeon, I have a slight droop.  Yup, droopy boobs now since I gained and lost weight.  BUT that gives a little extra skin for the expanders.  I MAY be able to go slightly bigger then I currently am.  That's not a guarantee.  Considering the scarring and removing the nipple and areola, tissue will be removed before sewing me back up. 

At the end of the appointment, they brought in a book of pictures showing before and after, plus nipple reconstruction with tattooing (yes, they form a nipple with the skin then tattoo around it to make it look as real as possible.)  Per Jim, they looked pretty real in the pictures.  I don't know. 

Even after the nipple reconstruction, there was a visible scar.  The plastic surgeon said it would be 3-4 inches across each breast and would fade over time.  Really?  I got my appendix out October of 2002.  I still have that scar visible now, 10 years later.  The ones on my chest will fade?  Yeah, sure.

I asked about the recovery time.  First, how long before I can work from home.  I THOUGHT with the surgery on Thursday, January 17th and that Monday being MLK day, that I could work from home on Tuesday.  At least that was what the surgical oncologist had said.  Not per the plastic surgeon.  She said two, possibly three weeks before I heal up.  Even moving my arms around, picking up the phone, moving the computer mouse, may impact how the tissue heals up.  So now I'll be out of work a lot longer than I had thought.

Then I asked about the drains she will leave in me.  It will be 2 on each side to drain out the fluids after surgery.  Since the tissue is being removed, it will leave a void in my chest.  That void can fill up and cause infection.  I will have two drains on each side.  One on each side on the top.  One on each side on the bottom.  The top ones will be removed after about a week.  The bottom ones will be removed in about 2-3 weeks after surgery, depending on how I heal. 

Wonderful.  Oh yeah, and NO SHOWER while the drains are in.  For 2-3 weeks.  EVEN better.  So yeah, I won't be leaving the house for weeks. 

I asked about limitations while recovering.  I can pick up cups and dishes and things like that, but no heavy lifting.  No laundry or cleaning or things like that.  Even better.

Then, I asked about the overall total recovery.  When will I be completely done. When will I be done healing, have the nipples and just be done.  She said it could be up to a year or even longer.  A friggin YEAR!  Seriously?   I was looking forward to July!  This might be ALL of 2013, and maybe into 2014?  Really?  :(  That just sucks!!


Last night was rough.  I think the reality of seeing those pictures just hit me and hit me hard.  Plus, the time involved, a 2nd unexpected surgery, added recovery.  All of it.  Just hit me.

We got back from the appointment fairly early before going out.  I had the news on (while I started writing this).  Channel 4 had 3 reports in a row.  A Dana Farber protein study, a breast cancer study about eating fruits and veggies & how that will slow tumor growth (not in my case), then a teaser for the 11pm news on a new breaking technology in Boston for how breast cancer is treated.  Within 5 minutes.  A couple of hours after seeing the "results" pictures. 

Jim was in a room in the back of the house on his desktop computer.  I was in the bedroom on the far opposite side of the house, bawling my eyes out.  I finally asked him to come out and he was great then, but I was already there.  It was hard to shake.  I'm not sure I have yet. 

Last night we did our usual thing at the 99.  Our bartender Kevin is the best, but they all know us there at this point.  I guess in a way its our Cheers.  We walk in and everyone says hi.  If the bar is full, Kevin will point out who should be leaving soon, so we can hang out in that area to wait for a spot to sit. 

Jim's friend from his gym met us there with his girlfriend.  It was the first time I met them and they were really nice.  I was glad I asked before they got there, but Jim said yeah, they know.  That's always hard.  Seeing people who know, who I didn't tell. There is always an elephant in the room at that point.  They know, I know they know, but  no one says anything about it. 

I drove last night, Jim had a few of Kevin's drinks (Kevin has a VERY heavy hand!).  They were chatting away, telling crazy stories.  I remembered hearing one of them that Jim ended up telling, from while he was on vacation years ago.  In general, its a funny story.  But it was about going bald and what peoples heads are like without hair.  So Jim and his friend were talking about head shapes and what they would be like without any hair at all.

That was too much for me.  I know that Jim didn't mean ANYTHING at all by it, but I had to lean over and say, "not a good conversation for me right now".  He immediately changed their conversation.  On the way home, I asked him if he could be mindful of how different topics might impact me right now.  He knew right away that I was talking about the bald conversation.


The plastic surgeon appointment wouldn't leave my head.  I kept seeing those post surgery photos in my head, with the 4 inch scar across each side, without a nipple.  I was just in a bad place.  It was not good.  I couldn't stop.  I kept talking about all of my fears.  I had no filter and each and every dark thought came pouring out of me along with the tears that were streaming down my face. 

I remember saying I hated this year, since my 38th birthday.  September 9th.  On September 27th I had my wrist surgery.  I've had biopsies twice.  I'll have the "harvest" this month, the mastectomies, then the removal of the expander for the permanent implant.  4 actual surgeries this year, plus biopsies and chemo.  Yeah, this year friggin SUCKS. 

It ended up being to much for Jim.  He got up to go in the back room.  That was too much for me.  I lost it.  LOST it.  Sobbing hysterically to the point I started hyperventilating more than once.  I'd finally be able to breathe again, then it would start up all over again.  I went out of the bed room and yelled for Jim.  He told me to calm down and just go back to bed.  He was going to watch a movie. 

I was a mess.  In my mind, I thought he was done.  Not just that he couldn't take it in that moment, but that he just couldn't take anymore of it at all... of me, of dealing with the cancer and appointments and the surgeries and recoveries and fertility and one thing after another.  I thought he wanted out and that he want to leave me.  That pushed me over the edge.

Right now I can see the spot on the floor in the hallway where I just collapsed, sobbing out of control.  The hyperventilating got worse.  I couldn't breathe at all and I felt like I was going to throw up at the same time. 

I walked out of the house and sat in the middle of the front porch with my head between my legs, trying to breathe, gasping and still sobbing.  The fresh cold air helped and slowly I ended up calming down a little and my breathing finally started to get back towards normal. 

Within a few minutes, Jim realized I wasn't upstairs anymore and went looking for me.  I'm not sure what he thought when he saw me.  We don't live in the best area.  It was midnight.  I was outside, in pajama pants and a Tshirt, in socks, sitting in the middle of the front porch on the floor, still crying, with my head bent down holding it in my hands. 

He got me inside and back into bed.  When I calmed down a little more, I was finally able to tell him where I was in my head.  He just put his arms around me, told me it would be alright, that he loved me and wasn't going anywhere.  All he had wanted to do was go in the other room and watch a movie. 

I'm still not back in a great place, but I'm not as bad as I was last night.  I know that some days will be easier than others, some hours will be darker than others.  Last night was bad.  Bad.

When I first got the call saying cancer, I was a mess.  Last night, I was right back there, but almost worse.  It was the first time since October 29th that I was that bad. 

I've been trying so hard to stay positive, be in a positive place and think good thoughts.  I have doctor appointments almost every day.  My expectations of what is going to happen keep changing.  I think I'm okay, that I've accepted things, then something else comes along and throws me for another loop.  That was yesterday. 

The recovery and reconstruction process was more than I expected.  A year?  Another surgery?  3-4 inch scars across my chest?  While I'm going through chemo?  Drains in for 2-3 weeks?  I can't control the reconstruction?  I get what I get basically.  It was just too much at once.  Toss in the fertility drugs that I'm taking with my hormones ALL over the place....  I guess it was bound to happen. 

Maybe now that it did, I'll be in a better position to handle it when it happens again.  Because I know it will.  Its not if I will have another bad night, its more about how long I will go before it happens again. 

Sometimes it is really hard.  I know that other people take my lead.  I try to be positive and put on a happy face, spinning all the positives.  I feel fake.  Yeah, I believe in all the positives.  I know I'll be okay when all of this done.  I know they will get the cancer out of me.  I know I will get through chemo.  I know I will get through this. 

But I am still afraid.  I still get overwhelmed.  I know there are unknowns and I'm afraid of those. 

I don't share those with most people.  I fake it.  I try to be positive for everyone else.  Sometimes I feel like I'm comforting others.  And that gets me mad.  I'm the one with cancer!  Why am I trying to make other people feel better?  Shouldn't I be the one who needs to feel better? 

Most people get it.  Between books and blogs I've read, plus messages I've gotten, I know that I need to be okay with being selfish and thinking about me and what's best for me.  I've been trying to limit what I let in right now and what I expose myself to for different influences.  I don't need any extra stress.  I don't need any extra drama or negativity.  Some people for whatever reason, can bring that out for me.  I have to limit my contact in those situations. 

I'm not afraid to speak out when things bother me, which is good.  But it is SO hard to ask for help.  I hate the thought of being dependent on anyone for anything.  I don't want to be weak.  Maybe I'm afraid of being judged, I don't know. 

Work pushed me over the edge this week and on Monday I am going to have to have a very honest conversation with my boss about what I can and can't handle right now.  My workload may need to be readjusted right now.  I'm mentally exhausted. 

This week was tough, just being home so much.  I NEED to keep busy.  My old apartment is done.  I don't have to do anything over there anymore.  With the fertility drugs, I can't do any exercise right now.  I'm trying to watch what I'm spending, since retail therapy got a bit out of control for a while.  (4 new Alex and Ani bracelets, 2 FUCK CANCER hats, several sweaters, a few pairs of jeans....) so going out to stores is not the best choice right now.

I was home.  Monday, Tuesday and Thursday nights, while Jim went out to his classes at his gym, I was home with the dog.  On the sofa, watching tv or online or reading, in pjs by 7, not moving for the night.  NOT good for me.

I NEED to be busy.  I NEED to do things.  Sitting home is just way too much for me. 

That's one reason why I can't wait for the "harvest" to be done.  At least I could get out and get to kickboxing a couple times a week to do SOMETHING.  Plus, punching and kicking the hell out of something makes me feel better. 

The doctors, other than the fertility one, said I have no restrictions until surgery.  And from the research I'm done, the more I do now, the better shape I'll be in for surgery and the better and faster I will heal. 

At the same time, keeping busy, exercising and being active are all good for me mentally.  I need that to keep my sanity.  If I can keep doing that up until surgery, I will be in a much more positive place going into it.  Which is what I need to do for an even better outcome. 

This week will be another challenging week for me.  I still can't exercise, and I have NOTHING again for the 3 nights that Jim's at the gym.  My friends are busy with work and the holidays and their own things. 

I'm trying to stay positive and I'm trying to get out of where I was mentally last night.  I know I'm slightly better right now.  The gloomy weather doesn't help.  I can't even go for a walk right now. 

Hopefully I will find something to take my mind off of things.  I need a good, happy distraction.  I'm hoping I can find something within myself to snap me out of this.  Writing it all out definitely helps.  I know I can't keep this all in my head.  That's how I got to where I was last night. 

But that's an issue too.  I do get to dark places in my heads.  It happens.  I try to share it.  But it can be too much for other people.  Last night it was too much for Jim.  I know that just reading this is too much for some people to handle.  And even though on one level I know I HAVE to be selfish and only worry about me right now, I don't want to be a burden on anyone and I don't want to bring anyone else down. 

I've even censored myself writing here... just so I'm not putting too much on people reading it!  How crazy is that?  Even in the place where I want to just vent and get it all out, I censor and hold back, thinking of how it will impact other people who are reading it.

Three good things with upcoming appointments this week.  Social worker Allison on Monday and shrink (psychosomatic psychiatrist) on Wednesday. Then a call with my case manager at my health insurance on Wednesday night. 

I haven't held back with Allison at all.  VERY honest with her about everything and she gets it.  I'm glad I have all of those resources in place. 


Ahhh.... guess I had a ton of my mind today that I needed to get out.  I know that keeping this blog is good for me.  I know I NEED to get things out of my head and writing it out helps me find clarity with everything too.

Even as dark as some of the places get, I still know how lucky I am.  I really do have a ton of support.  My friends & family are great.  The cards, texts, emails, FB messages mean so much to me.  I appreciate it all so much.  Things like that help me when I do start to go to the those dark places.   So PLEASE, feel free to keep them coming!  :)  I can use all the support I can get. 

I have been saving messages, texts, emails and cards.  I keep some cards in my bag and some at home, to have them around me.  I have a folder in my email set up to save emails I get for my personal and for my work email.  When things are tough, I can read those as a reminder of the support I have.  So thank you!  Please know how much it all means to me and how much it helps me get through the dark days. 

Slow Moving

Yesterday was a tough day.  I realized that its work that pushes me over the edge.  Work had mellowed out a bit since last week and I wasn't flipping out on Jim anymore.  I thought it was the new meds they gave me for anxiety along with having a game plan set up.  Not so sure.

Work was CRAZY yesterday and I was on edge.  Someone told me my face was white.  I know I didn't eat all day, just didn't have time.  I feel like I didn't get anything done, even though I didn't stop working on one thing for hours.  I was just completely overwhelmed.  Finally sent my boss an email in the afternoon that it all just wasn't going to get done.  I couldn't do it. 

Today I'm going in late.  I have 2 appointments this morning.  First blood work needs to be done before 8:45am so the courier can take it at 9.  I'm pushing it off as long as I can.  My 2nd appointment is in the same building at 9:30.  The IUD that I have isn't in right.  So along with the ultrasound I need for the fertility side of things, they need to take out the IUD and put in a new one.  Last time?  I was screaming and they gave me an ultrasound after to make sure my uterus wasn't perforated with the amount of pain I was in! 

They gave me a medication to take last night to relax my cervix, told me to take the anxiety meds after I finish the blood work, along with the Vicodin I still have from when they first put it in.  I'm so nervous about this appointment today!  I hate pain.

Last time, my cervix was so tight that she needed to dilate me.  That's why I was screaming in the doctors office. OH MY GOD!  That HURT!  And I have to do that again?  :(  NOT fun. 

I told Jim to be ready around 10-10:30 if I call him.  I might need a ride after.  I know I'm fine with Vicodin, I've taken it before between my back and my wrist.  And I'm fine on the anxiety meds too.  I've just never taken them together. 

This morning I've been procrastinating for these appointments.  I need to be there by 8:45.  It is 7:35, I'm on the sofa in my pajamas, hair in a bun, not showered.  I have no idea what I'm wearing today.  The only thing I've done is had coffee and breakfast.  I keep surfing online with the news on, putting off getting ready and putting off going! 

Got a Date

My surgery is now scheduled.  Thursday, January 17th at Faulkner Hospital in Jamica Plain.  Double mastectomy with immediate reconstruction.  Meeting the plastic surgeon this Friday to go over that part.  In total a 4-5 hour surgery.

I'll update more but after a TON of phone calls today plus over an hour with the breast surgical oncologist, my head is still spinning right now.

Still Spinning

Today I'm seeing the breast surgical oncologist to discuss my surgery, the double mastectomy.  I have a list of questions but I still feel like I'm not going to be asking enough or the right questions.  I just want this done.

Yesterday I got a voice mail from a plastic surgeon office.  They can see me for a consultation on January 4th and do surgery on January 17th.  Um, NO!  I want this as soon as possible!  I don't want to keep waiting and waiting and waiting.  That's nuts!  I called my oncologist's office back and asked if I could be referred to a different plastic surgeon so I didn't have to wait that long.  Guess I'll hear more about that today.

From what the medical oncologist said last week, chemo will start 4-6 weeks after surgery, depending on how I heal.  From what I read online, immediate reconstruction with implants is the easiest to heal from, so I guess that's good.

The sooner, the surgery, the sooner I heal, the sooner I start chemo and the sooner I'm DONE with chemo.  That's the goal here.  Four months is going to be a very long time.  I don't want this pushing into July.  I want this DONE.

So the chemo.  Once every 2 weeks.  The first 8 weeks will be 2 drugs, then the next 8 weeks will one different drug.  8 visits.  I was told to plan on being there for 4 hours, between meeting with the oncologist, prepping, drugs to prevent nausea and the other side effects, then the actual drugs and watching me a little to make sure I'm okay.  And I won't be allowed to drive myself.  THEN, the next day I get to go back, 24 hours after chemo ends, for an injection.  I CAN drive myself for that one.

My boyfriend already said he'd take me in town for the surgery.  Last night we were chatting and he said he'd work from home for a few days after surgery to stay with me and make sure I'm okay when I get home.

With all of that, plus all the times he's been with me for all of the doctor appointments already, plus more of them coming up, I don't want him to have any issues with work.  He's already crazy busy!  The last thing I want is any issues for him with all of that.

So... chemo.  8 appointments to get me back and forth and possibly company while I'm sitting there with an IV in me, freaking out because I HATE needles.  Trying not to be sick and wanting to be somewhere else.  Chemo appointments.  8 of them.

Friends keep asking how they can help, what they can do?  Chemo treatments!  Remember the Sex in the City episode when Samantha has breast cancer and is going through chemo treatments?  All the girls meet to join her, hang out with her and distract her.  They enjoy popsicles with her (to help with mouth sores during chemo) and make her laugh.  Plus, I'm guessing, make sure she's okay getting home.

So what can friends do?  I'll have 8 chemo treatments.  8 times I need to sit for hours at Dana Farber, hooked up to an IV, getting drugs pumped into me.  8 times over 4 months.  I would love rides back and forth from the hospital as well as company to help me get through the time I'm hooked up.  8 times, 4 hours each, plus the back and forth ride of 15-20 minutes each way?  Round up and say 5 hours... so a total of 40 hours of help.

I don't know exactly when surgery is.  I don't know how long it will take me to heal.  I don't know when chemo will start or end, what days of the week I'll go, what times of day I'll be there.  I know nothing about any of it, other than the drugs.

Making Decisions

Well, at least now I have a plan of action and have a better idea of what lies ahead. 

Last week I heard from the breast surgical oncologist.  Dr. C called on Thursday with the biopsy results.  They came back negative, which was great news.  No additional areas were found to have cancer.  She said the 2 areas on my left that showed on the MRI but not on the ultrasound weren't a huge concern, but I would need another MRI in 6 months to watch it. 

At that point, my choice was a mastectomy or lumpectomy. 

The next morning, I met with the medical oncologist, Dr. M.  She went over the process and timeline for each choice. Right now, nothing can happen.  At least until the middle or end of December when my fertility "harvest" is done. 

Right now my boyfriend has the pleasure of giving me a shot every night while I yell and cry and flip out about how freaked out I am about needles.  Lucky him!  He thinks I should try my stomach.  I would rather alternate between my thighs, even though my left is due tonight and its still bruised from the one last Wednesday night, forget about the one on Friday.

As of Friday morning, I was weighing the pro's and con's of having a lumpectomy or mastectomy.  Per the 2 oncologists, it was basically up to me at that point and whatever I was more comfortable with.

Friday afternoon I got my genetic testing results, which changed everything.  I tested positive for BRCA-2.  That means that instead of 12-13% chance of breast cancer in my life like any other woman, I have a 60% chance.  Well, I'm here. 

For women who have had breast cancer, the risk of another breast cancer is 1% per year (or 5% in 5 years, 10% in 10 years, etc.)  For a woman like me, having breast cancer and bring BRCA positive, I have a 3% per year of developing another breast cancer (or 15% in 5 years, 30% in 10 years, 60% in 20 years!)  This link gives a ton of info:
http://www.breastcancer.org/symptoms/testing/genetic/pos_results

60% chance of doing this again in 20 years!!  I will still be under 60 then!  Seriously? 

So like I said, hearing I was BRCA-2 positive changed everything.  Immediately, I decided on a double mastectomy with immediate reconstruction.  I'm already starting to look into have my ovaries removed as well.  Since I'm doing the freezing now, I won't really need ovaries.  If I ever decide to have kids, I just need the oven part.  Ovaries won't matter then, other than pushing me into early menopause for certain.

By having a double mastectomy and having my ovaries removed, I will significantly reduce the chance of ever getting breast cancer again (in some tissue that remains, I could get in there, even WITH a double mastectomy.. chance reduced by 90% though.)

SO... that's that. 

This week I will see the breast surgical oncologist again, Dr. C.  I'll go over the details with her a bit more.  She'll refer me to a plastic surgeon she works with for the immediate reconstruction to be worked out.  I guess I have a few options, but I haven't done much research on that yet. 

I should see the plastic surgeon within the next 2 weeks.  Per Dr. C, it will be 4-5 weeks for my surgery.  Right now I'm looking at early January.  The surgery will be at either Falkner or Brigham and Woman's, depending on scheduling issues.  And depending on my reconstruction choice, I could be in the hospital for up to a week. 

After surgery, I'll be recovering at home for several weeks.  Chemo will start about 4-6 weeks after surgery, depending on how I heal.  I haven't done too much research on the chemo, but Dr. M gave me printouts of the 3 drugs she wants to put me on.  The first 2 are together.  Once every 2 weeks for 8 weeks.  I can't drive myself to those and I could be pretty sick.  After those 8 weeks are up, I start the third drug for the same 8 week schedule. 

With a surgery date of early January, 4-6 weeks out for chemo to start puts that early to mid February.  16 weeks of chemo in total.  16 WEEKS!  WTF!  That's FOUR MONTHS!  In JUNE, I'll be done with chemo.  I'm really looking forward to July.  REALLY looking forward to July. 

I asked how long it will take for my hair to start falling out.  About 2 weeks after my first chemo.  My hair will start to fall out by the end of February or beginning of March. 

That part freaks me out more than anything.  More that surgery.  More than a double mastectomy.  More than 4 months of chemo and feeling like shit for 4 months.  Losing my hair is the BIGGEST thing that freaks me out with all of this.  I don't want to lose my hair. 

People keep saying, "don't worry.  It will grow back."  That means shit to me.  I don't care that it will grow back, I don't want to lose it in the first place!  I have had long straight hair for over 10 years!  I know in April of 2000 it was already past my shoulders and close to the middle of my back.  That's the shortest it has been this friggin CENTURY!  My hair is a part of who I am.  It is a part of my identity.

It will grow back?  In the mean time?  I lose part of my identity?  How is that thought supposed to help?  How does that make me feel better?  Right now you won't have all of you, but you'll get it back at some point.  BULL SHIT!  I don't care! 

I'm not sure how I'm going to handle not having my hair.  I'm sure I am really going to freak out. 

I already decided that I'm cutting it off.  Now that I know chemo won't be starting until February, I think I might put off cutting it all.  I was going to do it around New Years.  Now?  Maybe just before chemo starts. 

As soon as it starts falling out, I told my boyfriend he needs to shave my head.  I can't handle seeing it all fall out, piece by piece.  If I'm losing it, I'm doing it on MY terms, not waiting for it to spread everywhere I go.  That would crush me. 

This week I will find out more details about surgery and what I have to do.  But at least now I have a small idea of what is going to happen.  I have a rough timeline.  I know ballpark what is going to happen and when. 

I'm still scared.  I know I'll be okay in the long run, but I'm scared of how sick I'll feel on chemo.  I'm scared more will happen, more surprises will come up.  Just of the unknown in general. 

I still don't want to be a burden on anyone.  I don't want to put anyone out or make things difficult for anyone.  Asking for help is not something that has ever been easy for me.  I've pulled my back out more times than I can count moving furniture because I didn't want to ask for help.  That was just moving furniture. 

In theory, I know this is different, but I am who I am.  Asking for help has never been easy.  I have been independent for so long, only relying on myself for things and never trusting enough to count on anyone else.  And why would I want to be an inconvenience to anyone?  This is MY thing.  No one else should have deal with it too. 

Its hard too because I know people feel uncomfortable about this, with me.  I can see it.  I can feel it.  Some people don't know how to act around me or what to say to me.  So cancer is just that elephant in the room they aren't able or willing to acknowledge. 

I'm not going to break.  If I flip out, it isn't about being asked about this.  Its everything else!  Being asked if fine, even good.  Then I know people care and are thinking of me about this whole mess.  When I don't hear a word from people, not any sort of acknowledgement after they hear, "hey Julie has cancer"... just crickets?  Okay. 

So yeah, messages, emails, and especially snail mail cards!  LOVE them!  I LOVE getting home from work and when I see my stack of mail on the counter, I see a  card for me.  It instantly lifts my spirits!  And hows this... 118 Lyman St.  Look up my FB page for my city and go to USPS.com for my zip code.  Sorry a little work, but I'm not putting my full address here! 

I guess that's it for tonight.  More news should follow this coming week.  Otherwise, THINK JULY!