Life is good

Friends and family, I am so sorry I dropped off the face of the earth and haven’t posted for OVER SIX MONTHS!  The funny thing is that when I was going through the chemo and radiation, I was constantly reading blogs of other people going through the same deal, and sometime towards the end of radiation they all ended….dropped off, no more posts.  And I kept thinking what the *&^%^ happens at the end of radiation?!  Do you disappear into a vortex?!  And I vowed I wouldn’t do that.  Ooops.  Well, I now know what happens at the end of radiation and why you *poof* disappear from blog world ….you start to get your life back.  And it feels so good, it feels like stolen time, like you are playing hooky from school.  And you don’t want to post or even think about cancer any more….it feels like the prison gate that kept you cooped up for the last 7 months is starting to crack open…and all you can do is concentrate on getting out to the other side. 

Well I am firmly on the other side now.  I had my 6 month check-up (MRI and mammogram) and both are CLEAN!!!!!!!!!!!!!!!!!!!!!!  No signs of anything on either test J  Relief. 

My hair is shorter than I thought it would be at this point…..still more of a Michelle Williams than a the long bob I thought I would have.  I only lost my eyelashes / eyebrows fully that one time after chemo.  I started to lose them again about 2+ months later, but didn’t lose them all….just a light shedding, that came back pretty quickly.  My hair came back pretty much the same as what I had before – not really any curlier…not really any more white or gray.  I started to get mild lymphedema of the right breast shortly after radiation, so went to several physical therapy sessions.  They tell you that you are getting a “lymphatic massage” at physical therapy, so I was like – sweet! A massage!  But alas, a lymphatic massage is not really a massage….it’s like that Friends episode where Ross accidentally accepts one of Phoebe’s massage clients and massages him with a wooden spoon.  No wooden spoon is involved in lymphatic massage…but you feel just a jipped.  It’s more like light tapping all over your body.  The whole time I was thinking – are you actually doing anything?  And I don’t mean to bash it, because I know it works for some people, but it didn’t work for me.  After the 3^rd session, with no change in the lymphedema, the therapist asked – do you have underwire in your bra?  And yes, I did…so about a couple weeks after changing to non-underwire, POOF no more lymphedema.  Easy fix.

I started taking the Tamoxifen last December, a month after the end of radiation.  Dr Kurup wanted to wait a full month from the end of treatment so that (if possible) we would know if any new side effects were from Tamoxifen (and not just from the end of radiation or still after effects of chemo). If you remember, Tamoxifen is the drug that “blocks” estrogen from feeding the cancer (bonding with the cancer cells).  It does not stop estrogen production in your body.  But it can give you similar symptoms (hot flashes, weight gain, etc etc).  I am happy to report that I have been fairly side effect free with Tamoxifen.  Which also means there is no reason to not continue it for the full 5 years.  Now, that is not saying that I have zero side effects…I just happen to have side effects that you can live with for 5 years (when the only other option is a higher risk for recurrence). 

I think the most common question I get is – are you all better now / is it gone?  Hard to answer that one….it’s a 2 part answer: yes, and I don’t know.  All better in the short run (no cancer detected on recent MRI & mammogram), but this is a waiting game.  Breast cancer is usually very slow growing.  So I will go every 6 months for an mammogram (every year for an MRI) and as long as nothing is detected, and I don’t have symptoms, then we are good to go and nothing further will be done.  I have been prepped heavily by every oncologist that it is VERY COMMON for them to see “something” on a mammogram or MRI and the rest of my life could be filled with needless biopsies.  All of my scar tissue from my lumpectomy makes it hard to detect exactly if something is “there”.  So I have to say I was shocked that nothing was found on my recent tests.  I was expecting some sort of follow up tests…..what a nice surprise.

So much (good) has happened over the last 6 months, so it’s hard to wrap it all up in a post. My small victories: I sleep like a baby again (no more nightly ambien!), my thoughts don’t venture over to the dark side of cancer at all anymore, fatigue is completely absolutely gone (I just feel normal working mom tired now J)…in short, life feels normal.  And normal I will take.

xoxo

Molly

Hair, Hair, Hair

A couple of months before the end of chemo, when we noticed that my hair was growing ever so slightly, Bob noticed that well, ahem, some of the hairs looked like they were coming back white.  WHAT? NO WAY! Total denial.  I told him, nope they don't look white to me...I think they are just whispies and really light...not white. Did I mention denial?

Past couple months I hadn't really checked back in on the status on my stubble up there, but then a couple weeks before the last chemo I take a peek and ......eeeek, there are a lot more whites than I was anticipating.  Crap.  So I don't say anything for a little while (denial denial denial) but then at the last chemo, when Heather stopped by, I whispered to her (like I was admitting I had a drug problem) "Um, I think my hair is coming back white."

"WHAT! No way!" she gets up in there, takes a look.  "I don't know...it doesn't look white to me...it looks like it's coming back blonde."

Now, chemo is different for everyone, everyone has different reactions, everyone has different symptoms.  But do I actually think that my dark brown hair is coming back after chemo blond?  Probably not.  But that doesn't matter because I leapt on it like a live grenade.

"You know what...you're right.  It DOES look more blonde." I nodded my head enthusiastically.

Heather took another look, "yep...blonde for sure.  White hair is all wiry.  This hair looks fine.  It's blonde."

And so just like you need your best friend to tell you that your jeans are not too tight; that guy that didn't call you back is a total loser......I needed my best friend to tell me on my last day of chemo that my hair wasn't coming back white...it was coming back BLONDE.  Thank you friend.

A couple more weeks went by and well....the hair just wasn't growing anymore.  It still looked blonde (or white, whatever you want to call it) and light and wispy.  Like a baby chick.  But it didn't look like any new hair was coming out.  I mean, what the what...why isn't my hair growing?  I was a human hair factory before chemo.  My hair grew one to two inches A MONTH. I never sweated a bad haircut because after a couple weeks it was totally grown out anyway.  So when chemo ended I honestly thought it would be cha cha cha chia and just started growing like crazy.  But nothing was happening.  In one of my weekly appointments with the radiation nurse I asked her what her experience was since I am sure she sees a lot of people after chemo.  She said it typically takes 2 to 3 months for the hair to start to grow back.  She might have well just kicked me in the face.  TWO TO THREE MONTHS TO START TO GROW BACK?!  WHAAAAAAAAAAAAAAAAAAAAAAAAAAAT?????  I thought I would need a haircut in 2 to 3 months!?  So needless to say I left there a little devastated.  And quick online research confirmed....yes, most people waited about 2 months for it to start to grow and it usually starts out at 1/4 inch a month.  And I was only at week 4.  Boo.

But more online research also brought up that if I had used Rogaine while I was in chemo my hair would have grown back faster (per a clinical trial).  WHAT?! Why did no one tell me this?!  Thinking it was not too late, I asked my mom to pick up some Rogaine when she went to the store that next day and started using it right away.  And I am sure it was a total coincidence (since Rogaine takes months to work) but my hair started growing within a couple days (thank you hair factory).  So at 5 weeks out from chemo, I have a little fuzz up there.  And no, it's not all white...or blonde.  It's coming back in mostly the dark brown that I had before.  The white/blonde baby chick hair was just a phase before my "real" hair grew back in. 

So I was very happy with this progress until............a few days ago I was washing my face before bed and I thought "hmmm, something looks off with my face.  Is it puffy or something? Did I gain weight?"  I couldn't put my finger on it, but something was different.  I felt like I had an eyelash in my eye, so I got close up to the mirror to see if I could get it out....and WHAT THE ^$%& I am losing my eyelashes!!!!!!  Yes, large clumps of eyelashes were missing on my lower lid and I had about half the lashes I normally have on my upper lid.  And then after further inspection, oh my god....I'm starting to lose my eyebrows too.  Five weeks out from my last chemo and I JUST starting to lose my eyelashes and eyebrows? What?  That doesn't happen.....right?  OH yes it does unfortunately.  I was pretty bummed about it all for a couple days because I thought all of that was over...the new physical symptoms that are constant reminders of what I just went through.  But I had to make my peace with it. It was happening...nothing I could do about it. I just have to pretend like it's 1997 and pencil thin barely there eyebrows are in.  But I'm too afraid to wear eyeliner to fill in the missing eyelashes because what if when I take the eyeliner off at night I rub off the remaining eyelashes!? Sigh.  So while the hair grows back on my head, I mourn my fallen soldiers on my eyebrows and eyelashes.  So far they haven't all fallen out (knock on wood) and I am hoping that too is just a phase like my baby chick hair.

chemo - the aftermath; and the start of radiation

The weeks following the last chemo can be summed up in 2 words: awesome & frustrating.  Awesome because I could finally clear all the prescription bottles off my nightstand.  Awesome because I don't dread Thursdays anymore.  Awesome because there are no more throbbing pains, migraine eyes, headaches, bloody noses, mysterious bruises and waves of nausea. Awesome because every day I feel a little bit better.

The frustrating part is that even though I started to feel better every day, it's only marginally better everyday...like 2% better.  And about a week after chemo, I hit an all new low on the energy level.  There were days that I could barely summon up the energy to shower.  And once I did shower, I had to lay down for a half hour just to get the energy up again to get dressed.  That was a low.  I'm not there anymore (thank god) but at only 2% more energy a day, it's a slow build...and it's frustrating.

About 2 weeks after the last chemo I was hanging by a thread emotionally.  I was sick of being sick, tired of being tired, and just wanted to feel better again....NOW please.  I would lean over to tie my shoes, feel tired, and tears would pour out of my eyes.  Why did I still have to feel like this? When would this pass?  Thankfully I am not there anymore either, but I am still frustrated that currently at 5 weeks out I am still tired.

When I started radiation, 3 weeks ago, I was E X H A U S T E D.  I assumed that this was because of the radiation, but when I talked to my radiation oncologist about it at our weekly meet ups, she told me it was still the chemo and my body trying to heal from it.  In her experience, the patients that she sees after chemo are at their "peak" for fatigue and by the end of radiation I should actually feel better than at the beginning and every day I should start to feel a little bit better.  And it's true...I definitely feel better than 3 weeks ago.  But I have either hit a plateau and this is as good as it gets for a while, or else there is a small pause because the last week or so I have not been gradually improving....it's just about stayed the same.   

But I'll back up a little bit since it's been 5 weeks (!) since I have posted last and I haven't talked about radiation at all.  It all starts with a "planning session" 2 weeks after chemo.  In this session you get a cat scan and x rays so that can determine where exactly they want to direct the radiation.  You are set up on a simulator and have to lay like a sack of potatoes so that can set you up exactly how they want you to lay for the radiation machine.  They make a mold of the upper part of your body so that you are in the exact same position every time.  And they give you tiny tattoos (they look like small freckles) as markers to make sure you are lined up in the exact same spot each time.  My tattoos are 3 tiny dots - one in between my breasts, and one under each breast.  Every morning I go in for radiation I lie (like a sack of potatoes again) as they move me around on the table into the exact spot that they want me and line up my tattoos.

One week after the simulation, I started the treatments.  My first radiation date was September 15th.  It's every week day (with weekends off) and each session is about 2 minutes.  Very very quick.  It takes more time to park the car at the hospital than it does to get radiation.  I show up every day at approximately the same time (they assign you an exact time - my appointments ranged from 9:36 to 10:36, then just this week leveled out and are now 11:12 the rest of treatment).  If I had really bad eye sight (or were slightly delusional) it might almost be like going to spa every day...kind of.  You walk in past the reception desk (no need to check in for daily radiation, they want you to walk in "like you own the place"), grab a hospital gown off the shelf, go to a changing room (there are 6 to choose from), undress from just the waist up, put a gown on, lock up your belongings in a locker, then go and sit in the private waiting room (just for patients) and read a magazine.  A technician comes out and gets you and then we head back to the room with the machine.  I lie on the table  in my mold and let the 2 technicians move me and line me up to exactly the spot that I should be.  They leave the room, and the treatment starts.  It's 45 seconds at one angle, then the machine moves over and radiates another 45 seconds from another angle.  The technicians come back into the room and we are all done.

Once a week I meet with my doctor to discuss any concerns and for her to monitor my progress and any side effects.  So far it's been very uneventful....my only side effect has been fatigue (which is still much better than the fatigue I felt at the end of chemo).  The "sunburn" skin probably won't happen until week 4 (and hopefully it won't be bad) but we won't know until then.  In the meantime, they direct you to take preventative measures: washing with very mild soap (I use baby soap), applying either aloe or calendula cream twice a day (I use Baby Calendula cream by Weleda), and you cannot apply anything in the area up to 4 hours before treatment...so no deodorant, no lotions....nothing in the area.  I apply the calendula cream immediately after the radiation session and then again at night before bed.  So far so good....but again, I probably won't show any symptoms for another week or so anyway.  Fingers crossed these preventative measures are working.

Everyone asks how radiation is and my only response has been "good"....which good to me equals "way better than chemo" but unfortunately good is not yet "back to feeling normal" which again is frustrating.  Everyone also assumes it must be a big pain in the ass to go to radiation every day....but it's not.  I will take 2 minutes every day to 7 hours every other week anytime.  So again, I am comparing it to chemo and it is so so so so so much easier.  If I hadn't gotten chemo before I might think radiation is a pain in the ass, but to me it's the easiest thing I've done yet.

The one thing that did surprise me was that at the start of radiation, it was harder emotionally than I anticipated.  My second treatment, as the machine lined up directly over me, I felt tears well up...I couldn't believe I was doing this.  I couldn't believe I was putting more toxins in/near my body.  I couldn't believe that again I had to weigh the risks of doing long term damage to my body.  It was overwhelming.  But as long as I push those thoughts out of my head, I am fine.  And ...I have to push those thoughts out of my head.  Because even though we don't know if this is working, it's our best shot.  And right now, that's all I've got.  And I've made my peace with that.  A lot of very smart people are doing everything they know to make sure this doesn't happen again.  So for now, that is what I have to focus on. 

Fall has finally settled in for Portland.  The air feels crisp, it smells like rain in the mornings, the leaves are starting to turn.  At first I was sad at the transition away from summer...from the long evenings, the warm breezes, eating dinner outside.  But Fall is beautiful in Portland, and even though life still feels like it's on "pause" for us, I am looking forward to what Fall is - watching football on the weekends...getting the sweaters and jackets out of storage...planning a Halloween costume for Thomas.  It feels good to start planing something again.

*poof*

And like magic, 7 days after chemo *poof* I start to feel better again.....

ok, well this time wasn't exactly like magic.  The last few days have been rough.  Rougher than I was anticipating and rougher than I had expected for my last round.  Monday, Tuesday, Wednesday I was slowly feeling worse each day.  WAIT A MINUTE why I am feeling worse?! Wednesday I barely made it out of bed.  All I wanted to do was go to the grocery store, and I couldn't even muster up the energy to do that.  I'll be honest, I was getting worried.  I should start to feel better by Wednesday...but on Wednesday night I could barely make it to bed fast enough after dinner.  I was frustrated....hanging by a thread emotionally.  I was trying to grin and bear it since THIS IS THE LAST TIME EVER(!) I had to feel this way...but I had a lump in my throat all day and just wanted this all to be over and to start to feel better again.

Thursday morning I woke up and hmmmmmm I think I feel better?  It's tough in the mornings sometimes because I am still groggy from all the sleep aids (that don't work) that I take the night before.  I had to rush out the door for a 9am massage appointment, so didn't put much thought into it other than trying to concentrate and drive.  The massage was unfortunately a little painful because on another unfortunate note, peripheral nueropathy hit fast hard and all the sudden this week.  My finger tips, toe tips and bottoms of my feet were numb and painful (how can something be numb and painful!?) and slowly getting worse by the day.  Ella had been working on it to try and make the symptoms disappear and I have been ramping up by L-Glutamine consumption (which is supposed to help).  So, jury is still out on whether it is getting better.....I haven't given up hope yet.  I am just hoping that the sudden arrival does not mean permanent residence.

After the massage, I met up with a family member for coffee...and wait a minute, I am actually starting to feel better.  I was starting to feel energized again.  I actually got to make a trip to the grocery store (small victories!) and not feel like I had completely run out of gas by the time I got home.

And this morning, Friday, I feel even better than yesterday.  Starting to get it all back again....looking forward to a holiday weekend at the beach with family.  Because there is pretty much nothing that beach air can't cure....

stick a fork in me, I'm done

ALL DONE ALL DONE ALL DONE!!!!!!!!!!!!!!!!!!!!!!!!!

ALL. DONE. WITH. CHEMO. and I'm gonna go ahead and say it FOREVER!

Yep, I said forever.  Welcome to my mood swing, jump onto my roller coaster, it's a fun ride.  Today I am saying ALL DONE FOREVER.

Yesterday's chemo was fairly uneventful although very looooooooooooooooooooooooong.  We had a long meeting with Dr Kurup, talking about the future and our next steps.  She wants to see me my last week of radiation as a check up and to run my numbers to make sure I am healing.  That is when we will talk about starting Tamoxifen - the estrogen blocking drug that I will be on for 5 years.  This drug does not stop my body from producing estrogen (like the hormone blocking therapy that Dr Chui recommended).  Tamoxifen blocks my body's estrogen from bonding with breast cancer cells, making it so that estrogen is not the fertilizer that my cancer loves.  Other than that it was a pretty routine appointment, with the exception that we were all giving each other emotional high fives for making it all the way through and getting to our last chemo session.


Now another thing I was worried about for yesterday but didn't want to talk about (because sometimes don't you feel like if you say it, it will happen?) - I was worried my numbers wouldn't be good.  I had tell tale signs for the entire 2 weeks after last chemo that my platelet count was low.  No dramatic bruising (just some light ones) but a lot of bleeding out of the nose.  Nothing gushing....just more blood than normal and it didn't go away until a couple days before chemo this round.  When I mentioned this to Dr Kurup she frowned and said, let's get the results of your blood work stat.  It wasn't in the system yet, so she walked over to the lab.  I was nervous the entire time (especially since the frown!).  When she came back in she had total poker face and then said "149".  WHAT? My platelet count is 149!!!  That is fantastic!  I whooped! It has to be over 100 to continue!  Another emotional high five.  Never been so stoked to hear that I could get chemo :) 
And the best thing about yesterday - we had Karen!!!!!!!!!!!  I cheered when she came into the exam room.  I told her I missed her and was so glad that she was here for my last session.  She said she made sure that she got me today when she saw me on the calendar (oh, and bonus news, she has been on vacation for the past 2 1/2 weeks so it's not that she didn't pick me last time! My ego was intact).  When Karen was looking for a good vein she said she was glad that this was my last session.....I didn't have many more pokes left in my left arm.  Now, I can't remember if I've talked about this before (chemo brain and all) so if I have just skip to the next paragraph.  The reason that they can only use my left arm is that I had some lymph nodes removed from my right arm.  So for the rest of my life I cannot get my blood pressure taken on that arm, have an IV inserted, or in general have any kind of trauma or pressure on that arm.  These are all precautionary measures to make sure that I do not get lymphodema.  Lymphodema is not a super fun thing where fluid would drain to the bottom of my arm (because of the removal of some lymph nodes in the armpit) and it would never drain out resulting in a swollen arm.  This is permanent.  Obviously, I do not want lymphodema so will be doing everything possible to make sure I don't get it.

Karen looked over my notes from last time, obviously did NOT like that I vomited and said she would take care of me.  When I was all settled in my chair in the infusion room, before we started any of the drips, she leaned over and said - would you like some Ativan today?  YES PLEASE.  She said that it wasn't on Dr Kurup's notes for me today, but she thought I needed it since I threw up last time.  I mean, don't we love Karen?  We slowed the drip down BIG TIME to make sure I didn't have any reactions (like vomiting).  Like super super super slow.  My appointment yesterday started at 10:40am and we didn't get out of there until almost 5pm.  I took my usual 2 hour snoozer.  Again, it was that super light sleep where I could hear everything around me.  I woke up around 2pm, I could hear Heather and Bob whispering.  Heather had arrived for our last day chemo party and brought some lunch for us.  One thing I didn't even think about that Heather mentioned - she said, wow, aren't you glad you made it this whole time without getting a port!!!!!!!  Hell yeah I am! Two less surgeries (one to put it in, one to take it out) and no big scar on my chest! Another high five.

Chemo ended FINALLY and I hugged Karen and told her how wonderful she was.  Bob had joked that we never wanted to see her again, but Karen and I both agreed we'd love to see each other again....just not in the infusion room :)

Bob and I headed home, pooped and exhausted from the long day.....but both so stoked.  LAST CHEMO EVER.

This morning I had an appointment to meet my radiation oncologist.  I liked her immediately.  She came recommended from Dr Kurup's office.  She is just downstairs (in the basement) in St Vincent's, where I used to get my chemo infusions (love to say used to).  Her name is Dr. Jeanie Louie, and she is warm, friendly, super smart...she reminded me a lot of my rock star surgeon Dr. Langer.  She said she had talked to Dr. Langer this morning about my case (she says hello) and just to get more details than what the medical notes said. 

For me she is recommending 7 1/2 weeks of radiation (about 2 more weeks more than "standard").  This is called "boost dose" radation therapy.  It would be about 37 doses (or fractions) of radiation instead of 28.  Why am I getting more than the standard?  For one, I am 34 and she is not just concerned about 10 years out for me (which is the number most doctors talk about), she wants me to live another 50 years with no recurrence.  I didn't even set her up for this one, she voluntarily said this.  I could have hugged her.  She also said because during my surgery in one area they were only able to get 1cm of clean margin when taking out the cancer. 2cms of clean margins is the industry standard.  The reason we could only get 1cm in one spot is that there wasn't anything more to take - it was right at the edge of my skin.  My surgeon was not concerned about this 1cm clean margin just for this reason (since there was nothing more to take out) but Dr. Louie just wants to be extra cautious.  I asked her if there were any addition side effects for going longer (getting the extra boost) and she said only firmer tissue around the scar.  That's it?  Longer survival and less recurrence and the only side effect is firmer tissue around the scar?  Bring it.  I told her we weren't in any rush anyway.  Although a little piece of me did an internal UGH when I heard 7 weeks instead of 5.  This puts us ending around the 1st or 2nd week of November (depending on my start date). 

There are a couple of other therapy routines out there that is not recommending for me.  They are new(er) and only have data that is 10 or 5 years out and she only wants to give me something that has the numbers to back it with a low recurrence rate 20+ years out.  Those other 2 therapies are called the Canadian Treatment (higher doses 2x a day, so less total days under the machine) and Balloon therapy where they actually insert a balloon or catheter inside your breast and give high doses of radiation.  This is also called accelerated partial breast irradiation and only takes about 5-7 days.  Sounds great right?! Well, they only have data on it for 5 years and since I don't want to make another visit in 5 years, I'm all set on that one.

In terms of start date, they want me to come back in 2 weeks for our "planning session".  This is where they make a mold of my body so that when I lay under the radiation machine I cannot move and the radiation will go to the exact TARGETED area that they want it to go.  This is important because we are trying to avoid my major organs....like lungs and heart so that I do not have long term damage there.  I will also have a CT scan at this appointment in order to determine exact location of the radiation beam.

1 week after that appointment we do a 2nd simulation and if all looks good, then all systems go and we start radiation that day. 

Side effects from radiation are mostly localized to the radiation site - sunburn like sensation, general tenderness, swollen boob.  They recommend aloe 2x/day to help this, and a mixture of 1 part cornstarch and 1 part baking soda for my "folds" (under the boob, in the armpit) so that there is less friction. 

The other side effect that I had been (UGH) dreading is the fatigue.  We all know my fatigue level is at an all time high.  I don't even remember what it feels like to have energy anymore.  But when I asked about this (is the fatigue as bad as chemo) she said that in most patients that they talked to had rated chemo fatigue at a 10 (yeah, tell me about it) and then radiation fatigue at a 2.  A two?!?!?! I can do a 2!  Now, am I banking on this?  No.  Most people don't feel like they got into a car wreck with Taxol.  Most people don't vomit during chemo.  So I'm not gonna believe it until I see it......but I am super stoked that hopefully I will be most people!

The long terms side effects have very low percentage rates attached to them.  Less than 2% of the patients get pneumonitis (pneumonia like symptoms in your lungs, another reason to avoid that area).  This is treatable with antibiotics.  Less than 1% of patients get cancer from the actual radiation.  

Now in case you are wondering WHY oh WHY isn't this just all over yet, why are you doing radiation?  It is of course, a numbers game and statistics.  30+ years ago they did a study where they took 1,600 women with breast cancer.  1/3 of these women just had a mastectomy, 1/3 just had a lumpectomy, and 1/3 had lumpectomy with radiation.  The third that just had mastectomy had a 10% recurrence rate.  The 1/3 that just had lumpectomy had a 40% recurrence rate (holy shit).  The 1/3 that had lumpectomy and radiation had the same rate as the ladies with the mastectomy -  10%.  This was a total game changer for cancer (obviously) since 30+ years ago if you had breast cancer, they would almost always recommend going the distance and removing one if not both breasts.

So, now I start my 3 week "rest" where I heal and get my numbers up and just in general give my body a rest.  I'm ready for it, but I'm also ready to start radiation STAT and kinda wish we could get it over with. 

Today I am feeling good...I have all sorts of what I call "fake energy" from the steroids.  I know that I will start to wind down soon...tomorrow and Sunday will be no picnic.  But guess what?  This is the last time I will have to feel like this ever so BRING. IT. ON.

the other side

I have turned the corner, rounded the bend, I am closer to the other side of the river......the end of chemo is almost here, and it feels goooooooooooooooood.  The past couple weeks have been (dare I say it?) *good*.  It's been good physically (no pain in the last round after chemo!) but the best part is that it has been good emotionally too.  I can't remember the last time I have had a dark moment.  The dark moments used to be very common in the beginning, hiding in the shadows, ready to leap out at the first sign of physical pain or trauma.  Just yesterday Bob asked me if I ever had thoughts of recurrence.  You bethca.  That's all those dark moments were.  It wasn't the thought that I couldn't get through this round....it was the thought that there might be another round.  Or *gulp* worse.....that I wouldn't make it through another round.  That is the darkest moment.  And yes I visited that place, fairly regularly, in the first few months.  Would I see Thomas learn how to ride a bike?  Learn how to drive a car?  Be able to hold his babies?  Because as positive as we all are that YES we are getting it all out and YES this was the right decision to go through this crazy intense pain they call chemo, after it is all said and done - chemo and radiation and then 5 years of drugs....they still can't give me a 0% recurrence rate.  The scariest part is that the only numbers they can give me only go ten years out.  Ten years?!  Ten years from now Thomas is just getting braces.  Ten years from now Thomas is just starting middle school.  That's not far enough out for me.  But because I am so young and cancer is not common in your 30s, they just don't have numbers for what happens to people like me 20, 30, 40, 50 years from now.  And sorry, but I was kinda planning on being here 50 years from now. 

Now, I know what you are thinking...no one has a guarantee for another 50 years.  You could get hit by a bus tomorrow; collapse from an unknown heart arrhythmia; trip and fall and hit your head.  But do you actually think about those things?  Do those things keep you up at night?  If they do, then you are on the same side of the glass as me - the other side.  I didn't used to be on the other side of the glass.  I used to think that life was fair and things happened for a reason.  And yes, I had my share of shitty things happen to me....broken heart, losing a job, betrayal of a good friend.  But those are the normal shitty things in life.  At the time you feel like your life is over...but then you start to heal and reflect and realize that better things came out of those tough times.  But once you get news that YOU have cancer, and it's invasive and you have a high risk of recurrence......swooooooosh, all the sudden you are on the other side of the glass, nose pressed up, looking over to the side that you used to be on.....where bad things like that didn't happen.

I know a few people on the other side of the glass with me.  They lost people in their lives, important important people, when it was far too early to lose them.  On this side of the glass we know that life isn't fair.  Monsters exist.  And sometimes really shitty things happen to good people.  For no reason.  And for those of you that will say - oh you will find the silver lining on why cancer happened to you!  I am sorry, but no I will probably not.  I was not one of those people that didn't appreciate life.  I was one of those people that appreciated every moment of my wonderful life and my loving husband and my awesome family and my healthy baby.....and even small moments like a wonderful sunset or time alone in the car on the commute to catch up with friends over the phone.  I was a glass half full kind of girl.  But this cancer....even if it doesn't come back, the permanent damage I am doing to my body right now....the only silver lining there is that at least we are trying to make sure it doesn't come back.  Chemo is very toxic....so toxic that the exact chemo I am getting, even if cancer comes back, they won't give me this exact chemo again because it would actually do more damage than good.  That is what we are doing right now....trying to kill as much cancer as possible without too much permanent damage to my body (mostly my heart). 

I don't love being on this side of the glass.  I wish I didn't know that monsters exist and dark moments are hiding in every shadow.  But for NOW for TODAY I am in the sun, no dark moment is lurking.  I am feeling strong....I am feeling happy....and I am hopefully hopefully hopefully one Dr's visit away from never having chemo again.

There is still hope and love and happiness and good moments on this side.  Some days it's harder to find.  But it's there.  And it feels just as good when you find it....maybe even better than it did before.  It feels precious.

I had a lot of good moments these past couple weeks.  My good friend came up to visit me from San Francisco.  She arrived last Thursday...and I was so scared because on Tuesday and Wednesday I was so so so tired and getting more tired by the day.  What is happening?! I am supposed to feel BETTER as the days pass...not more tired.  Both Bob and my Mom told me to take the steroids but I felt like that would just give me a false sense of energy.  But then Thursday came, I was freaked that I would be too tired for the visit, so I took them in the morning.  And the visit ended up energizing me so much that I didn't need to take them again and felt great the entire time!  We went to the beach (of course) and it was 80 degrees...at the beach.  This is rare...like once a year rare.  We couldn't have planned it better.

Two days ago we spent the day at a golf tournament to raise money for cancer research.  My cousin runs a non-profit (http://parforlife.org/) that funds prostate cancer research.  Cancer has been a big part of our families lives unfortunately.  My uncle, his father, passed away from a long battle with prostate cancer 2 years ago.  My cousin has run this non-profit ever since, which joins his love for golf with raising money for prostate cancer research.  My uncle had started this particular tournament after his diagnosis with prostate cancer and we have attended every year.  For the last few years, while living in San Francisco, Bob and I would fly up to play (or while I had Thomas, just volunteer to help).  It's a fun event and one that we look forward to every year. 

This year "our team" for golf was my dad, Bob, my brother and my soon to be brother in law (my sister's fiance).  My mom, my sister and I showed up to volunteer and help (although I will admit we didn't too all that much except drink ice tea in the country club!).  My sister did the flowers (you can see her past flower arrangements and all her worldly talent at her blog! http://ahousemouse.blogspot.com)  It was a fun day.  We hung out as the boys golfed, which is followed by cocktail hour then a dinner.  This year was different because it was linked up with a ladies group from the golf club (called "In the Pink") to combine raising money for both prostate cancer and breast cancer.  So of course, when I showed up, bald, all the ladies from In the Pink were all over me....and were so sweet and gracious and told me that they loved seeing me because this is why they work so hard to raise money.

At one point, before the boys were back from the round, before the cocktail hour, one of the ladies in the pink said she wanted me to meet someone.  I assumed she wanted me to meet one of the doctors that they raise money for.  But when she introduced me, it was the auctioneer for the live auction that night.  Uh oh....I saw where this was going.  They want to raise a lot of money (of course!) and here I am - bald - and wearing a flashing neon sign that says I have breast cancer.  So the auctioneer starts explaining how the live auction is going to work tonight during dinner and how they want to raise as much money as possible.  Uh huh.  And how in one part of the program they ask all the cancer survivors to stand up so that everyone can see how many people cancer affects.  Uh huh.  And then that is when the big money donations start....and would you mind saying "who would like to start the bidding at one thousand dollars!".  Uh uh.  Sorry I had to turn it down.  First of all, I don't love public speaking.  Never have.  But public speaking while bald?  I mean, I know I may seem all brave going out into the public bald, but I am not one to try and draw attention to myself while doing this.  It just wasn't happening.  The auctioneer was very sweet, and of course sweetly asked again if I would speak at all.  Uh uh.  Sorry.  But I did say, well if you want to, you can point me out to try and get more money...but I really don't want to talk. 

So the night goes on, first cocktail hour, then dinner.  The live auction starts.  I start to get a tiny bit nervous (what did I just open myself up to? what is this guy gonna say?).  But about an hour goes by into the auction and I start to relax a little more.  Then the auctioneer says that he wants to acknowledge someone special, someone who is going through treatment right now.  (GULP)  Is Molly here?  I raise my hand.  He is very sweet and talks a little bit about how life is a circle, how my Uncle Tom passed away and now I have a son named after him (this is all kinda a blur, I can't remember what else he was saying because at this point everyone in the room is staring at me which is a little intense and I just have a smile pasted on my face which I am hoping looks genuine and not deer in headlights).  And then....he asks everyone to give me a round of applause for going through treatment and still coming out today (or something like that.  again, kinda a blur).  So people start to clap, and then some people start to get up, and then before you know everyone in the room is standing up and cheering and clapping and saying words of encouragement and every eye I meet is full of warmth and love and wow......it was overwhelming in a totally good way.  There were about 200 people there all standing and sending me the most positive loving energy.  I didn't even know what to do.  I wanted to cry (I held back, not a big public crier), I wanted to go around and hug everyone, but I just sat there and soaked it all in (I will admit, I felt a little paralyzed).  It was a wonderful loving moment, one that I definitely would not have chosen since did I mention before I hate being the center of attention? But nonetheless, a wonderful moment where I felt special and really really good.  So now I pretty much know what it feels like to get a standing ovation at the Oscars for the lifetime achievement awards.  I swear it felt like that.  And all I did was go through chemo....

And to continue the good moments from this past week.....last night we went to an old friends house for a BBQ.  She was one of my BFFs in high school & college and we had lost touch with each other over the last 12 years.  I have missed her and thought about her often and I am so happy that we are back in touch.  We sat in their backyard, on an amazingly warm night, the kids rolled around and played in the grass and dipped in the kiddie pool.  The adults sat around and drank and laughed and told stories.  It was so normal and fun and nice.  And the perfect way to spend chemo eve.

Oh yeah, did I mention?  LAST. CHEMO. (I'm going to go ahead and say) EVER. in just a couple hours.  Wish me luck.....

the good, the bad and the ugly

This last week was not an especially good one...nothing awful happened, but let's just say I am glad to be nearing the end.  My "good" week only lasted a whopping three days.  Thursday, Friday and Saturday I felt great! Tired, but healthy and feeling good overall.  Then Sunday afternoon hit and you could not peel me off the floor.  I was exhausted....and getting the tell tale signs of coming down with something - the aches, the chills....and a fever.  It was only 99.8, so not time to call the Dr yet.  I downed some C monster, snuggled into bed early and crossed my fingers that I would not feel worse the next day.  Which I didn't...but I didn't feel any better either when Monday rolled around.  After laying in bed all morning, I finally took my temperature at noon.  100.3.  Shit.  The Dr's office generally wants to know when you are around 100.5...and I wasn't there yet.....but they were always telling me I didn't call when I should so I decided to be a good girl and let them know and see what they wanted me to do.  I left a message and nurse Julie called me back, and was consulting with a doctor while talking to me.  Well....they didn't know what to do with me.  They were not thrilled at the fever, but they didn't want to drag me in to run the numbers on my blood if this turned out to just be a side effect from the Neulasta shot (the white blood cell booster that I get the day after chemo. Yes, 7-10 days later you can get side effects from Neulasta.  It is not my favorite shot.  Not only does it make me feel like garbage, but it's over $600 out of pocket every time I get this shot.  I have done the math.  I could have a Chanel purse by now.  I'd rather have a Chanel purse).   Julie asked some more questions (how do you feel? like garbage.  Can you still eat? yes)  The fact that I could still eat made them happy, so Julie told me to take some tylenol and see if the fever goes away.  If it doesn't go away, call them back.  If it comes back tomorrow, call them back.  If I feel worse at all at any point - call them back!  Ok ok ok.  I asked at what point did the fever have to get to in order for them to be concerned.  She said anything over 100.8.  Ok.  Popped a couple tylenol, hopped in bed.  And because I am obsessive I took my temperature 15 minutes later.  101 degrees.  shit shit shit.  Ok, the tylenol just hasn't kicked in right?  Not calling yet.  15 minutes later....100.8 degrees.  shit.  Ok, not calling until it's been a FULL hour.  An hour later, 100.3.  Ok, phew going in the right direction.  Two hours later it was back to normal 98.6.  Crisis averted.  It came back later that night, hovered at 100.6 (just high enough to make me nervous all night) and then *poof* at 11pm it vanished.  So Tuesday, no fever...but just wiped from the last couple of fever days.  And then it was Wednesday and I was feeling better.....but it was WEDNESDAY .....already.  Crap, how did that happen so fast?  So all I day Wednesday I ended up dreading Thursday - chemo day.

Chemo day started out normal enough.  Bob was traveling so it was just my mom and I.  I had almost convinced my mom to just drop me off, the nurses take such good care of me and all I do these days is sleep during the infusion - what lousy company.  But as we were driving there for out 9am appointment she said, no I am coming in...it makes me feel better to be with you.  Plus, I know she worries that something may happen and she likes to be there to make sure I am ok.  Moms have a sixth sense I tell you.  I was happy that she came.

We did not see Dr Kurup this time.  Instead we met with the head nurse practitioner, Erin.  I like Erin a lot, I have met with her before.  She is smart, warm and very straight forward.  We talked about my initial signs if peripheral neuropathy.  I have mild symptoms in my left foot (and sometimes leg).  It comes and goes and feels tingly like my foot is asleep.  Erin was happy that it comes and goes - she said this typically means that it is not permanent and would go away after chemo.  She said that the people they get concerned about are the ones where the symptoms come on strong and stay strong.  We talked about my fever - most likely just Neulasta side effects.  We talked about how this round was much much easier than last round (in terms of pain) and she was thrilled the steroids were working out so well.   My numbers looked good (white blood cell count 5, platelets a little over 100) and so we were cleared to go.  Off to the infusion room....

As usual, started out with benadryl....and zzzzzzzzzzzz.  I heard Lina, my chemo nurse come over and switch out the bags once the benadryl was done.  On to anti-nausea and steroids.  Then about a half hour later I heard her come over and switch out the bag with Taxol.  I don't know how far in I got, but I started to feel nauseous.  I opened my eyes, asked my mom to get me some ginger ale.  "Are you not feeling good?"  I don't know....I don't know.  She came back with ginger ale, I sipped some, closed my eyes again and willed the nausea to go away.  It wasn't.  It was all the sudden getting worse.  Oh no oh no oh no.....I popped up, frantically tried to un-recline my chair and said "Mom, TellThemToStopTheDrip, TellThemToStopTheDrip!!!!!!!!!!!!!" She was frantically ringing the bell, trying to find a nurse.  I was saying "stop the drip", but what I meant was I think I'm going to throw up.  Which I did.  In the wastebasket in front of me.  Three times.

Lina came over, stopped the drip, whisked the wastebasket away, and plopped a cold wet washcloth directly on my head.  And let me tell you, I love a wet washcloth when I am not feeling good....and now I am forever spoiled because normally (with hair) I have only put one on my forehead or the back of my neck.  But when you can plop directly on your bald head....heaven.

My mom asked Lina to get Dr Kurup.  She came out moments later, rubbed my back and was sympathetic....and gently said I am so sorry but we have to keep going, we will slow the drip down even more this time.  I looked up to the taxol bag and we had barely made a dent.  Lina got more anti-nausea drugs, told me they would make me sleepy, injected it directly into my IV and I was OUT.  I don't even know how long I racked out for, but it was 1pm when I finally opened my eyes.  My mom was still by my side and I knew she didn't want to leave me, but I also knew she must be hungry.  I said I was feeling better and maybe we should eat some lunch?  She went downstairs, picked up a couple sandwiches and I stayed awake the rest of time and we chatted.  It was 3pm when we were done.  We were both a little tired and both a little traumatized.  As my mom told me later - no mother likes to see their baby get poisoned and then throw up. 

Fortunately, it has only been up from there.  It's now Sunday night, still no pain (knock on wood).  I woke up this morning and felt like it started to creep in, but steriods+advil seem to do the trick to knock it back.  I am tired....but definitely not as wiped as last time, so crossing my fingers that the rest of the week will just get better and I won't have to dip into the vicodin.

So obviously, the above stories were "the bad" and the "the ugly".  Onto "the good"....

Last Saturday, during my brief  "good week", Bob, Thomas and I were out and about for the day.  It felt good to get out...nothing too exciting, just bummed around, ate lunch out, shopped.  We were in a clothing store and this one store associate kept coming up to me.  Can I help you find anything?  Can I start you a fitting room? Are you finding everything ok?  The last time she came up she was babbling a little, talking fast...a little nervous.  "So, I have a funny story for you...well not funny so much, but um.........so my mom started chemo last Thursday...." she stopped, her eyes started to well up.  I grabbed her arm, gave it a squeeze.  She gathered herself and continued.  "And, well I just wanted to tell you that it makes me feel so much better to see you ...out and looking....strong".  I asked her how her mom was doing.  She said not good, she hasn't been able to get out of bed yet.  I told her that my first treatment was my worst and that the first 4-5 days were the hardest, but after that I always felt better and if her mom wasn't feeling better she should call the doctors because there is so much they can do to make her more comfortable.  She nodded enthusiastically, said she would do that, thanked me and said again it made her feel better to see me out and about and that it made her realize her mom would be ok.

Bob was watching this exchange from across the room but didn't hear what we were talking about.  When we got outside I told him what she said.  He said, "wow - that must make you feel really good...you are an inspiration."  And you know what? It did make me feel really good.  These past four months I have only felt like a burden.....one more worry to add onto my family's life.  I never thought I would make someone else feel better just by being out and about...and bald. 

When I started going out bald I didn't do it for a fashion statement, or a political statement or any kind of statement.  I just happen to be bald right now and if my husband still loves me, and my baby still loves me and my family still loves me....well then what do I care what a bunch of random strangers think when they see me?  If anything I thought that people would avoid me, or think I looked like a freak, or just pity me.  I never ever ever thought it would make someone feel better.  So for the hundred people that see me and think I am a freak-  if just one person sees me and thinks "my mom is going to be ok" or my girlfriend or my sister or my best friend....well, doesn't it make it all worth it? 

You couldn't wipe the grin off my face for the rest of the day.  I held my bald head high.

So that was my good moment.  I've wrapped it up, put it into my pocket and am savoring it.

Oh, and P.S. - ONE. MORE. TREATMENT. TO GO.