How Lucky Am I?!

This is just a teeny tiny snippet of all the wonderful things you all have sent me during my recovery time.  I am so lucky to have such wonderful family and friends who look out for me.  I feel like I can conquer ANYTHING with you all by my side.

I can't say it enough, so I will say it again... Thank You everyone for everything you've done for me.  The reason my recovery is such a breeze is because I know I have help everywhere I turn.  This means a lot to me and don't think I'll ever, ever forget any of it!

I love you all!

- J.

A Little Bummed

My second and final expansion did not happen today.  I'm a little bummed out about it, but it's not a bad thing.  I arrived at Dr. Spiro's office, went in to a room and waited for him.  All of the supplies were set up for my expansion so I was all ready to go.

Dr. Spiro came in and took a good time examining me.  He decided that I was not healed enough for the second expansion and that I should come back in two weeks.  I guess he could see the disappointment on my face and he said that it's nothing to worry about.  He reminded me that I am already way ahead of schedule and that I am not ready for the last bit.  He even said that when I come back in two weeks I might not need another expansion... I might already be done, but he won't be sure of that until he sees me again.

At least it was not a pointless drive up to West Orange to see him.  I did have a lot of questions for him and he answered them all.  My 3 month healing process began the day of my mastectomy so that means I can get the implants in June.  This makes me VERY happy.  These expanders can't come out soon enough!  He didn't have any secrets to help me sleep better, but he recommended a body pillow which I acquired a week or so ago.  I guess I just need to figure out how to use it so that it will benefit me the most.  I know everyone is different so I don't know if there is any real secret to a good night's sleep with rock hard boobs.  I can't run or exercise yet and the 5 pound rule is STILL in effect (ugh, I can't wait until all of this changes!).  He approved of the sports bra's that my Aunt got me so that's good.  I also just went to JCPenny's and found a regular bra that will work for when I want to be "fancy."

So my next appointment with Dr. Spiro is Friday the 13th!  Oohh!  That is when I will either get my last expansion or find out that I am already done.  It'd be nice to have to have only one expansion.  That would make me super impressed with myself. :)

- J.

T-Rex Arms

This is just a quick update to share a tumblr that summarizes my t-rex arms :

http://trextrying.tumblr.com/

Thank you for this Theo.

Expansion number two is tomorrow!  Let's get this over and done with!

- J.

Taking a Break!

This upcoming week is the first week in quite awhile where I really don't have much going on in regards to my health.  I have an appointment on Tuesday with Dr. Spiro for my second and final expansion and that's it!  I am very excited to get that over and done with.  I also have a ton of questions for Dr. Spiro... some which include - when can I go back to work?  When can I run again?  When can I get these damn expanders out?!

I know the answer to that one... it's in three months.  Hopefully that three months began at my surgery date and not at my last expansion date because that would make me super sad.  I can't wait to get these things out and I am hoping that the implants will be a lot different, which I am sure they will be.  I just find myself being overly cautious with these expanders in.  I am so afraid of bumping in to something or squishing them some how when I sleep.

Like I've said many times before they are rock hard and creep me out to touch.  But I am becoming more comfortable looking at them and overall they don't look so bad.  The scars across my breasts are slowly fading away and they look more like a paper cut than a crazy deep scar.  There is still some redness and scabbing but all of that will heal and go away. They are not bruised at all and look pretty normal.  They are a little lumpy, but I know that's the expanders doing their job so I can't complain.

The one thing I CAN complain about, and I WILL complain about, is the stupid pain on my right side.  It's so annoying!  And it's frustrating because I KNOW how it could feel if it just healed the same way as my left side.  I think my right side has always been a special little snowflake... I've had tendonitis in that arm... also with my mirrored back tattoos the right side hurt a lot more and bled a lot more than my left.  I guess there are just more nerves and what not happening on that side.  The good thing is that the pain doesn't ruin my day.  It's not that kind of pain, it's just a constant pain that's there.  I'm reminded of it all the time, but I can continue doing what I need to do.  Rita's not concerned about it; she said it will go away in time.  I just need to keep stretching.  And I do!  Constantly!

My next physical therapy appointment isn't until April 3rd... which is the same day as my oncologist appointment.  I want to impress Rita and let her know I've been working hard, so I plan on stretching all through this week.  I am much more agile with my arms and reaching over my head isn't too much of a problem (sometimes it is with my right, but no big deal).  It's amazing how far I've come since my little t-rex arms.  Physical therapy has been such an important part of my recovery and I am so happy that Dr. Blackwood recommended it.  If she hadn't I'd still probably be a hot mess!

- J.

"Motion is Lotion!"

That is what Rita my physical therapist keeps telling me and I know it's true.  When I am moving around I definitely feel better.  I usually feel the worst in the morning when I wake up because I am all stiff from sleeping in the same position the entire evening.  Yesterday Kerrie and I went out to buy a body pillow since Dr. Spiro gave me the OK to sleep on my side.  I tried a little bit of side sleeping last night, but it didn't work out so well.  I just need to practice I guess.

Monday's physical therapy appointment went really well.  I felt good in the morning and felt good afterwards.  Rita gave me new exercises to do.  I just try to keep stretching when ever I can.  I must say, I did poo poo child's pose before, but I am loving it!  It's my favorite stretch.  My pain is the worst on my right side behind my armpit so that stretch feels great.

Physical therapy this morning was a little tougher.  I slept OK last night, but I woke up SO stiff with my right side hurting so bad.  It's a strange pain that I don't know how to describe, I just know that it hurts.  I tried to stretch it out in the morning (that usually works) but I couldn't get it to work out.  I told Rita and she went right to work on my sore right side.  She told me that the pain I am experiencing is in the area where the expander ends and like I've said before, my muscle is just not happy.  She gave it a good massage and it feels better now.  She also gave me another good stretch for my lower armpit area, but it hurts SO bad to do.  I know if I just keep working at it, it will get easier and soon I'll work out all the tightness and pain.

I have another PT appointment on Friday.  I look forward to them now because they make me feel so much better!

- J.

Song for my Road to Recovery

So things can get tough as I heal (especially with this whole sleep thing), but when I am feeling down and out this song keeps me grounded.



"The ghosts that we knew will flicker from view and we'll live a long life."

- J.

Early Morning PT

Oofta.  Waking up at 6:30am for a physical therapy appointment is NO way to start off a morning.  I woke up feeling pretty sore.  My shoulder blades and armpits were killing me when I got to physical therapy.

I asked my physical therapist if she knew the secret to sleeping.  Apparently I am sitting up way too much.  I need to get less pillows under me and hopefully in time I will be back to sleeping like a normal person.  I really want this so I'll do anything to achieve that goal!

When I think of physical therapy, I think of exercises.  Well, today's appointment consisted of a chest massage.  Now, if you don't know me, there is something you should be aware of - I HATE MASSAGES!  Hate, hate, hate!  So here I am lying down as Rita is massaging my poor pectoral muscle that has been through way too much.  And of course it's tight as all hell.  I am not amused.  And she is not amused either.  My muscles are way too tight and I need to be stretching them constantly.  That's fine, just please stop digging your thumbs in to all my pressure points please!

She is slightly baffled as to why my right side hurts so much more than my left.  I had my lymph node taken from the left side, and my right side is my dominant side so it should be reversed.  But I always have to be difficult so that is why I am sure.  She is pleased that all my joints are working just fine.  It's just my poor muscles and soft tissue that are having a tough time adjusting.  I am suppose to give myself massages as much as I can.  She even wants me massaging my boobs!  She told me to move them all around and everything.  Maybe I should do the exercises in the middle of a Barnes & Noble.  "Oh hi!  No, don't mind me, just doing my PT exercises over here."

I just need to loosen up.  That's all.  She highly recommends the yoga pose called, "Child's Pose."  So, I guess I am doing yoga now... Lame.  I'm feeling a bit sore, but the good kind of sore.  My chest feels like it just went out for a run and it's hurting... but in a good way.

- J.

Art Imitating Life

Ever since Dr. Spiro gave me the OK to shower with no restrictions, life has been good.  It feels so good to be able to shower again!  I am still very very slow when it comes to getting ready... I think my fastest time has been an hour and a half from undressing to dressing again... but it's not like I need to rush anywhere just yet.

I find it a little difficult to adjust to these weird new expanders in my chest.  They are rock solid and kinda creep me out hardXcore.  Dr. Spiro placed two small circular bandages (that I've decided could one day actually stand in for fake nipples if I wanted to take a test drive with nips) on the little puncture wounds where the needle went in to expand me.  I had such trouble getting them off the next day because they were stuck on pretty well to my skin and I kept freaking myself out when I could see myself touching my skin, couldn't feel anything, and my skin was rock solid.  It's just strange!  Thank God the expanders won't be in forever, they can be kinda creeptastic.

Also, when not confined in my medical sports bra they feel weird!  They kinda feel like they are moving around all over the place.  I know they aren't, but it certainly feels that way.  The incisions aren't that bad. They look just how I thought they would.  The left breast looks a little lumpy from the expander, and in my opinion the right one looks a tad bit bigger.  But my right breast was always bigger than my left so that's just art imitating life I say.  They do look perfectly normal in clothes though, so that's really all that matters for now.

Tomorrow I have my second physical therapy appointment.  I've been doing all my exercises and feeling much better.  It feels good to be able to wash my own hair again!

- J.

Why won't you let me be Great?!

Today was my first expansion and let me tell you all... I thought I was going to give myself an anxiety attack.  I was SO nervous.  Though, like I've said before, there is nothing that could be worse than those drains coming out... but I was beginning to question that maybe the expansion COULD be that "worse" thing.

Well, thank God I was wrong!  The expansion (so far) was a breeze!  I am feeling great now.  I've been taking only Advil all day and that's been enough.  Dr. Spiro is still very happy with how I am progressing.  The expansion process was interesting.  First, I was able to get all my bandages off.  All of my scars have been revealed.  I have not really looked at them... not ready for that quite yet.  Dr. Spiro said there will be some scabbing, a little rawness, but that everything is healing just the way it should.  He then used magnets to find the valve to my expanders.  A needle was placed in my skin to get to the valve.  A tube was connected to that needle and then Dr. Spiro and the nurse used comically large needles to fill me up with 40 CC's.  It wasn't bad at all.  It was over in no time!

And I am SO thrilled because he said I'd only have to fill up one more time!  That's it!  And he is giving me two weeks to rest before the second and final expansion.  I can shower normally.  I can even take off this tight, itchy bra in a week.  THANK GOD!  It's the worst.  I just need to find another good, supportive bra to use.  The bra's that were recommended were a bit expensive, so if anyone out there who has had a double mastectomy or knows a friend, please ask for any bra advice (the cheaper the better!).

I told Dr. Spiro that I began physical therapy and he seemed OK with that.  He said I just need to be slow and meticulous.  I asked him if it was OK to do normal, every day activities.  He asked what I meant by that.  I just hinted at some washing dishes, cooking, that kinda stuff.  He didn't seem too happy by that.  He explained that I am still healing and that any repetitive motion should be avoided.  The 5 pound rule is also still in effect.  This info bummed me out a bit because I was all excited about getting my life back... but at the same time, I don't want to rush anything, hurt myself, and fall behind.  I am doing so great!  Why won't Dr. Spiro let me be great?!  I'm sure he will...  so for now, I will continue to slowly do my physical therapy exercises a bit at a time to stretch myself out and just continue to be careful on all other fronts.

- J.

Physical Therapy

Today (which in my world is still Monday, March 12th), I had my first physical therapy appointment.  I was very excited and nervous all at once since I've never done physical therapy before.  I have also been quite sore still and it seemed as if my tiny T-Rex arms were never going to go away.

But by golly, that just was not true at all!  I arrived early to physical therapy and waited anxiously to see what they would have me do.  I met with Rita who went over everything.  She specializes in breast cancer, mastectomies, reconstruction and lymphedema, so as you can imagine, she was quite knowledgable.  I told her about the pain, where I was feeling it, and how it was affecting my day to day activities.

Then, like magic, she fixed me!  Sorta.  She had me show her my range of motion and what I could do.  She then had me lie down on the bed and she began to show me stretches I could do.  They hurt, but at the same time they were amazing!  By the end of it all, I could reach my hands over my head!  Not as gracefully as I would have hoped, but I could at least do it.

My right side hurts a lot more than my left side.  I'm not sure why since the lymph node was taken out of my left side.  I feel like there was more "trauma" on that side.  The place where I feel the most amount of pain is in my armpits.  Rita explained that underneath the armpit is where the pectoral muscle cinch together and that is why I am having all that pain.  I explained to her the pain in my "rainbow" area and that pain is from the pectoral muscle being stretched.  She told me that we just need to relax the pectoral muscle so that it knows it's OK to be where it is now.  I've been having such trouble sleeping, but once my body learns how to relax, I'll be off to dreamland in no time!

She gave me 3 exercises to do 4 times a day 10 reps of each exercise 3 times.  It's a lot, but I plan on doing it all!  I did it tonight before I go to bed.  I have another appointment with her Friday morning and I want to show her how awesome I progressed.  I can't wait to have full range of motion with no pain!

Tomorrow (Tuesday, March 13th) is my first expansion with Dr. Spiro.  I am super nervous about that.  I am scared of the pain it may bring, but I still have many of my pain meds here so if I need them they are at my disposal.  I will update everyone on my first expansion later.

- J.

Suck it Cancer

Yesterday was the big day!  I wanted to update everyone, but I got so tired by the end of the day I just couldn't do it.  But here I am!  And I am all ready to tell you all about my pathology report!  EEP!

I was very nervous heading to Dr. Blackwood's office.  Deep down in my gut I knew everything was fine, but what if, just what if, something was a little funky?  What if it was a little different than we all thought?  What could the report possibly say?!  Theo drove me to the hospital and we met up with Dad at the office.

The appointment began promptly at 10am.  I met with Dr. Blackwood first for her to examine me.  She still can't get over how good I look a week after surgery.  I told her I am feeling better day by day.  She then called in Dad and Theo to go over the pathology reports.

So here we go... I am going to explain it the best I can... feel free to ask any questions!  First things first, I AM CANCER FREE!  Suck it cancer, you don't get to hang out in my body any more.  Booyah!  Second things second, it turns out that the cancer was not DCIS... it did break out of the milk duct a bit.  What they found was, "micropapillary invasive carcinoma."  And guess how big it was?  Just take a WILD guess!  Come on!  OK, I'll tell you, it was 1mm.  ONE MILLIMETER!  Dr. Blackwood said that that just does not happen.  One does not pull out a one millimeter tumor.  It's too tiny!  You can't find something like that on your own!  It's so tiny that the only info they can get from it is that it was cancerous.  They are still trying to see if it is estrogen positive or negative.  They are still trying to get more info, but it's so tiny they can't get anything from it.  They were able to get clear margins, so that's it.  That's the amount of cancer I had in me.  One millimeter.

I had a double mastectomy with reconstruction for one millimeter of cancer.  Dr. Blackwood said I must have had someone looking out for me (duh!), because if there was no discharge I'd still be living with the tiny cancer, that would have grown and spread over many years.  I'm young, my body is able to handle all of this, I don't have children I have to take care of yet, I have amazing people looking out for me as I recover.  Now was the time to get it done.  Someone out there knew that one day I'd need to get a double mastectomy, and why not get it now?  Get that 1mm of cancer out, and never have to worry about it again.

I asked Dr. Blackwood what she thought of the little calcifications in my milk duct and why they were there and she said the pathologist is still looking in to it.  It may have started as DCIS, and then the little mm decided to break free.  I may still have more info to report later in the game.

I will still meet with an oncologist.  She said that usually 4mm of cancer and above they treat with chemo and possibly radiation, but she's not sure how he will handle 1/4 of that.  I'm hoping I don't have to deal with any of that, but I will do whatever the doctors say.  I have not been lead astray yet.  My doctor was so pleased with the results, as am I obviously.  I am so happy and relieved and can now focus on recovery.  I have my physical therapy appointment on Monday and my first expansion on Tuesday.  I will be very tired this upcoming week, but I am ready to get this all over with and behind me!

I love you all!

- J.

Out Damned Drains! Out I say!

So, I no longer feel like the villain Bane from the Batman series, with tubes of "venom" running in and out of me.  I officially had my drains removed today!

The past couple of days have been quite busy for someone who just got out of the hospital.  I've been busy taking medication.  Kevin's been busy measuring my drains day and night as we watch them drain smaller and smaller amounts of fluid, hoping that Dr. Spiro will indeed take them out on Tuesday.  Kevin has been meticulously bandaging the drainage sites and keeping them infection free.  Actually, I think Kevin has been the busiest one since the hospital!

On Monday, we went to a little mall with a Barnes and Noble to walk around during the afternoon.  "All" that walking certainly tuckered me out, but it was so nice to get out and walk around.  I called Dr. Spiro's office with my drainage report and he said I could indeed get them out on Tuesday.  I was so thrilled to hear that!  The drains and tubes were soooooo annoying.  I had been sleeping sitting up most of the time.  I had to be careful that no one bumped in to me.  It was just obnoxious.

Finally, Tuesday morning arrived!  I popped a Valium and some Tylenol in preparation.  I figured it would hurt a bit so I wanted to be prepared.  Kevin and I drove up to Dr. Spiro's office bright and early in the morning.  We met with him and he couldn't have been happier with the way things were progressing.  I swear I am already the size I was before the operation!  I can't believe that I woke up with breasts!  I did not expect that, and I think he didn't either.  But my body certainly was ready for it.  He told me the nurse will pull out the drains and I will come back in a week and he'll fill up my expanders a bit.

He left and I laid down for the nurse to take the drains out of my left side first.  (I had two tubes on each side).  I asked her if it would hurt.  She said I'd feel a tug.  A TUG SHE SAID!  It felt like a rope was being pulled out of my chest it hurt SO BAD.  The pain I felt has been the worst pain since the operation.  It was HORRIBLE.  I couldn't believe it.  The tube snaked around my breast area, so it wasn't just a little tug, it was like a magic trick where the magician just keeps pulling out his long tied together handkerchiefs from his hat.  EVIL I TELL YOU!!  EVIL!  And that had to be done four damn times!  I admit it, I cried.  It hurt hurt hurt.

But it's done!  They are out!  And I feel 100% better without those damn tubes and grenade drains hanging off of me.  I am more mobile and can pull up my own pants now.  SUCCESS!  I was also able to take a shower.  I had to wrap my chest in saran wrap, which was quite amusing, but at least I got a nice wash in.  I couldn't enjoy it as much as I would have liked because I became quite paranoid that my bandages were getting wet even with the saran wrap so I tried to shower as quickly as possible.  But it got done.

Now I am just resting from that traumatic drain pulling experience.  My sister has the best rocking chair in my room and it puts me at such ease.  I'm just going to hang out here for awhile...  I'll talk to you all again soon.

- J.

I'm Baaaack!

First of all, I'd like to thank my splendid guest blogger for keeping everyone updated whilst I was time traveling through anesthesia land.  Unfortunately, I actually did not time travel (bummed about that).  I do not remember any dreams or fantastical journeys.

As one can imagine the morning of my surgery was quite stressful.  Lots of questions were asked and I tried to answer everything to the best of my ability.  The staff at St. Barnabas couldn't have been any nicer and I enjoyed all the transport people as they wheeled me from room to room, they kept me amused.  Before surgery I had to head to nuclear radiation.  They had to inject some dye into my breast and let it travel through until it found my first lymph node.  Then the doctor marked it for my Breast Surgeon to remove.  That took a good 20 min or so.  And because I had a lymph node removed I can no longer have blood drawn or my blood pressure taken in my left arm EVER again.  I had a bracelet on that said LIMB ALERT (I so want that tattooed on me).

After that I hung out in room 10 (Esa Tikkanen's room!) with my peeps until I was rolled away to OR.  I got super nervous sitting in the OR room.  I talked to some residence who work with Dr. Blackwood.  The were very nice.  Then around 12:30pm I was finally rolled to the OR room.  It was SCARY in there. So bright with so many medical supplies!  I moved from my gurney to the operating table and the nurses / doctors started to make me comfortable and get me ready.  The last thing I remember was one of the nurses saying that they were putting something on my ankles that will compress and decompress and that the first compress may hurt.  Well, I shall never know if that first compress hurt because I was OUT.

As you were updated - both the mastectomy and reconstruction couldn't have gone better.  I don't even remember waking up from anesthesia with any problems.  I didn't cry, but my moth was so DRY I couldn't stand it.  Also I had oxygen up my nose which I kept thinking were boogers.  I didn't want anyone to see me with boogers!  How embarrassing!  So I kept trying to pick them.

It took me a LONG time to get up to a room.  One reason was that I had a fever and a high heart rate that they wanted to monitor for awhile.  I think the MAIN reason though was that they didn't have a room ready.  The boyfriend and I didn't get up to my room until 1am!  Once I got to my room I felt much more comfortable.  All the meds helped me sleep like a champ and I was just so happy to get this all over with.  I can't say I remember much about my hospital stay because the Percocet helped me sleep like a champ and I constantly demanded them.  My personal nurse Rosa was so so nice.  She took great care of me and made me feel super comfortable.

I plan on updating some more, but for now I must rest my tired little arms.  I'm not as computer agile as I used to be!  And these damn drains really are a bother.

Thank you to EVERYONE for all your love, support, prayers, cheers, visits, calls, cards, texts, etc, etc, etc.  They did, and still are, helping me get through the pain / recovery process.  I love you all.

- J.