Sunday August 25 – I faced a fear

Coming up on my one year of survivorship, I was starting to feel anxious again.  Not about recurrence, not yet, I fear that in 3 years, 5 years, 10 years, but not now.  However, I was feeling anxious about my breasts in general.  I have not worn a normal bra since my diagnosis.  Almost, two years.  First, the biopsy site was too hard and angry, making wearing a bra so uncomfortable that I started trying out sports bras.  Even those were uncomfortable.  I finally gave up and starting going without a bra.  Extra dense breasts even at my size were somewhat perky and when I wore two tank tops together under my shirts, most people could not tell I was going without a bra.

After my surgeries and radiation, even though I am numb, I am still hypersensitive on my right breast.  Go figure that one.  Most of my right breast is still numb, I can feel pressure, but I do not feel touch.  There is a small area outside the areola where I can feel touch, but that quickly tapers into the area of no sensation.  Despite all this numbness, I have the hypersensitivity.  Pressure on my breast after a few hours starts to irritate, and if the pressure continues, it starts a throbbing ache.  There is so much scar tissue on the bottom side of my breast; there is no sensation there at all.  Yet, even the slightly reinforced bands of my lycra/spandex tanks cause me discomfort and I look forward to the end of the day when I can take my tank off as the feelings of discomfort are starting to get intense and relief is all I can think about when I get home.

Because of this and my emotional turmoil about how my breasts look now, I have avoided taking that next step of actually being measured and fitted for a bra.  I am still not sure how I feel about my breasts.  With one mostly numb, I feel a great disconnection from my right breast.  It sags more than my left breast.  Due to just enough blood flow to keep my nipple alive, my nipple is no longer a dusky pink, it is closer to a pale greenish tinge of my normal skin color.  As for my left breast, there is still the divot where my incisions intersect.  No breast tissue there, if you feel it, you go straight down to the chest wall.  This divot makes a W shape on the bottom of my breast.  There is also a weird, not quite a divot, but lack of fullness on the left side of my breast before the areola.  My breast slightly slopes inward and then puffs out right at the edge of my areola.  Every time I think about it, I get frustrated and angry.  How can a plastic surgeon take a perfectly normal breast with plenty of tissue to work with screw up the reduction that creates these stupid imperfections that a person already dealing with body issues because of the cancer, now has to deal with these too, on her good boob. 

Therefore, I have avoided finding out what size bra I wear now.  I have avoided going through that stress of having to acknowledge the imperfections, that my left breast is larger than my right breast.  Before all this is was just slightly larger.  Now, it is visibly larger.  In addition, I really was not sure how being fitted for a smaller bra size would leave me feeling, on top of all the other emotional issues I have tied up with the “girls” now.

Jordon and Kelly are getting married soon.  That means I need to find a dress.  Finding a nice dress to wear, I felt like I could not wear a spandex/lycra tank top to hold my breasts in place and provide the support I really need to keep from becoming completely uncomfortable.  Hence, my anxiety about my breasts and what was I going to do with them for the wedding.  I am the mother of the groom.  I could not go braless (as that is painful as well), and wearing tank top bras under a nice dress just does not feel right.  I knew this day would eventually come where I had to face taking the next step in survivorship.  I had to breakdown and deal with getting a bra.

I chose this weekend to do it.  My cousin/sister would be here.  She would hold me if the emotions became too much.  She would help me celebrate making this next step.  Moreover, the bridal shower for Kelly was this weekend, and I wanted to test the waters of taking that next step using her shower as my debut.

I thought I was ready.  I was nonchalant about my decision.  I was ready for this next step.  Deda was here, we made a morning of errands to do before we got ready for the bridal shower.  We stopped for eyebrow threading, went to the nail salon, manicure for me, pedicure for Deda.  Then we had to stop back at home because I dumped my coffee in my lap.  I just could not face Nordstrom with a coffee stain across my crotch and down my legs.  (I did not want to admit it at the time, but the closer we got to going into Nordstrom the jitterier I was feeling.)  After I changed my pants, we headed to the store.  We went up to the floor with women’s wear and lingerie.  I checked in at the register with an explanation to the sales woman there of what I needed and why.  She advised that they had a specialist there specifically for my needs and she would call her. 

Deda and I took a seat on the chairs provided for those waiting and I started shaking.  I could feel the tears trying to form behind my eyes.  Deda told me I could do this.  Mishel came over and introduced herself.  She started asking questions about my surgery, how I felt, etc.  Those tears started to migrate from the back to the front if my eyes, and I could feel my dragon start to unfurl, ready to take flight through my midsection to protect my heart.  Mishel told me she deals with this all the time.  Nordstrom is a store that has a specific program for woman who have had mastectomies, lumpectomies and reconstructive surgeries and how to fit them along with helping with insurance covered prosthesis fittings and claims.

Mishel took me back to the fitting room and started with a primary measure.  The band size, which may have changed, and just by looking at me and getting my input on what hurts and why and she looked at my extensive scarring in little miss righty she figured out my sizing.  She left the room and I sat there on the verge of tears.  I texted Deda, asking her to come sit with me, while I awaited the return of Mishel.  She quickly came back to the dressing rooms and knocked softly on the door.  I let Deda in and the tears had their way with me.  Deda held me as I cried.  I cried my fear out, my anxiety of my body image, my fear of the future, my fear of not fitting into a pretty bra anymore, my fear that it would be too painful.  My fear that I will always feel deformed and detached from my breasts.

She held me while all this came out silently.  She let me shed all this out on her shoulder.  I was back in control somewhat.  I still felt like I was shaking, but my dragon was curled back into her ball, ready to spring when I needed her, but no longer expanding her wings around my heart.  Deda and I sat on the bench in the room, talking about my boobs.  I showed her how they look now, over a year after the last surgery.  I had her feel my divot, and look at the weird shape on the left side before it puffs back out at the edge of the areola.  She looked at me in the mirror catching my eyes and reminded me all these little imperfections could be fixed.

Mishel came back in, and I introduced Deda, my sister, to Mishel.  She had no problem with my emotional support being there with us.  She brought with her a selection of bras in two different sizes.  She did not give me a chance to look at the sizes.  She pulled the first one off the hanger and had me face away from her while she tried the band around me.  Nope, I needed the next size up. She told me to just drop it on the floor.  I could not do that.  I hate finding clothes on the floor of dressing rooms.  How could I be so disrespectful to drop a new bra on the floor that some else will someday try on.  Deda finally took the bra that didn’t fit band wise.  Evidently, I am between band sizes now.  Back to a 38” band.  Next bra was pulled off the hanger and once again, I was told to face away from her while she fastened the band.  She told me how to pull all my breast tissue into the cups.  She adjusted straps and made sure the “darts” lined up between my breasts and laid flat against my chest.  She showed me how to pull the straps to get my breasts to settle into the cups.  As she adjusted the strap length again, we could see the difference in breast sizes by how much overflow I had on the left cup.  She re-adjusted that strap to allow more tissue to settle into the cup.  Only once she was done and felt I was firmly settled correctly into the bra cups would she let me see how I looked in the mirror. 

There I was, feeling like a scared little girl, staring at myself in the mirror, wearing a bra for the first time in almost two years.  I saw myself, my fat, my fear, my strength, my determination.  I saw a survivor, a woman, a girl, a warrior.  I saw me taking yet another step in healing.  A step I had not realized until I actually faced it that I needed to take.  Pieces started falling back into place that I had not realized were not where they needed to be.  I was feeling closer to whole.  As all this ran through my brain, as my heart shifted a bit and my soul settled, Mishel was asking me how it felt.  Was there any pinching, aching, pain?  Deda was giving me a look that told me she was wondering how I felt as well as being proud of me facing this next step.

The bra was soft; it helped shape my breasts into something that looked more normal to me.  The pressure was no more than my tank bras or my cotton weekend bras that have no shaping or real support, just kind of hold the girls in place a little better than wearing nothing.  I realized I could do this; I could wear a bra again.  Mishel asked if I wanted to wear the bra out of the store.  Yes, yes I would. She yanked off the tags.  Then she asked me if I wanted to try another one.  I was eyeing a nude lace bra.  I wanted to feel pretty.  The pink one I was wearing was pretty, but not as lacy and pretty as the nude one.  Mishel went out to get that one in my size, and was back quickly.

Same as before, I stood with my back to her as she fastened the bra band, adjusted straps and again guided me through settling all my breast tissue into the cups.  She checked the darts and the sides, did some adjustments, advised me what to do to fully settle my breasts into this slightly differently shaped cup and I was ready to see myself in the mirror.  I was perkier in this bra.  Deda gave me the thumbs up.  She said it was fantastic.  The tits were back.  She admitted to me that she was always jealous of my boobs, small, firm and perky, not needing to wear a bra.  Even after 35 when my breasts started to grow again, as they do with age.

Mishel had me try my undershirt on over this new bra and I felt good.  This one was a little tighter, and dug into places the other one did not, kind of made me itch, but I liked the way it made me feel overall.  This was the bra I wanted to wear out of the store.  Not a problem, Michele ripped the tags off and I put my shift back on before we went out to the register to pay for my two new bras.  I wore the nude lace bra out of the store and for the remainder of the day.  We went to the bridal shower and I showed my DIL to be, Kelly, that I had finally graduated to a regular bra.  Another little step to moving forward.  She seemed to understand this step showed genuine happiness for me.

I have gone from a 38E to 38D.  I still have body image issues, but I think that will be a larger issue to tackle.  Most of it is my weight, and losing weight is becoming a tougher nut to crack than I had hoped. I have not given up on that. I will keep trying.

The Bridal Shower was a wonderful event, and watching Kelly beam as she opened gifts and talked with her family and friends.  I enjoy watching her laugh and be herself.  I have discovered I have learned more about her than I thought I knew due to the games played.  I learned even more about my soon to be daughter-in-law, and love her even more for it. 

Life is healing one step at a time

Wednesday, April 17 – I shed a little tear, and wallow in self-pity

I figured any changes to my right breast from radiation would happen in the first 6 months, as that is the basic recovery time for radiation treatment.  When the initial six months passed with just some minor changes to my breast I thought to myself, I could live with this, I think.  Now it seems I notice a new change weekly.  As I was getting ready for bed, I yet again noticed how much smaller, my right breast is from my left breast.  It continues to shrink a little more each passing week.  I miss the weight of my breasts.  Evidently, I had super dense breast tissue, which is why they had such a firm weight to them.  Moreover, they still feel so foreign to me.  Even the left breast, which is not nearly as numb as the right breast, feels strange, like it is no longer a part of my body.  Lefty has small areas of numbness around the scar tissue from the reduction surgery, and I would think having more sensation in that breast would help in feeling like she is still a part of my own body.  Alas, not all these positives about Lefty help.  Lefty is a good cup size or more larger then my poor traumatized right breast.

As I look at them and contemplate the last 18 months, I wonder about all the decisions made along the way.  Should I have opted for a mastectomy and forgone radiation treatment?  I could have had full reconstruction then, and maybe my breasts would be closer to sisters rather than distant cousins.  I would not be missing a chunk of breast tissue that creates the dimple in my left breast giving it a “W” look.  I might not have to face a possible lifetime of tenderness and hypersensitivity on my right breast, and the little third boob off to the side, where according to Robert, the plastic surgeon and a million feet of drainage tube curled in there.  I would not now be shoving two of the pads that came with my Knix tank bras into the right cup to try to make my breasts look even and prevent Lefty from pulling my tops askew due to the size discrepancy.

All this second guessing and wondering if I have the courage to face another surgery to try and fix this brings a tear or two (ok, maybe ten), to my eye.  Then my little self-doubt demon starts running amok in my brain and reaches down to my heart with little jabs – you will never be in proportion again.  You will never lose the weight you so desperately want to reduce.  You will never feel sexy again.  You will never be brave enough to be intimate with your husband.   Then my self-pity pixie set in, right behind my eyes, and started pushing those damn tears out.

I fecking survived this betrayal of my body; it turned against me and tried to kill me, why do I still have problems with the battle scars?  Why am I having the hardest time reconciling my new shape and being ok with my body the way it looks now?  I would think I would have a harder time dealing with my diminished mental abilities.  As frustrating as they are, I feel like I accept these new limitations to my ability to multitask, the speed at which I can figure out complex problems as well as my physical speed in tasks with less emotional effort. 

I should be celebrating my battle scars.  I should be proud that even though my boobs no longer look the same, are different sizes from one another, and one has minimal ability to feel touching sensation that I still have my breasts.  I survived this battle, kicked ass in this battle.  It tried to take me down, but I survived.  Chemo – bring it on, surgery could not completely change the shape of my body, and radiation, sure, you have wrought changes I am not happy with, but I am alive and cancer free.  So dammit you stupid demon and pixie, go back to your hidey-holes in my psyche, I am ready to be proud of these damn battle scars.  No more feeling disfigured.  No more feeling I am unlovable because of my new imperfections.  No second-guessing the battle waged.  I won, that is all that counts. 

I am taking another stand on my road to where ever my new center resides.  I am not there yet, but I am finding my strength and will to get me there.  I will find my complete inner peace, where I can work with my dragon, demon and pixie in harmony.  So we can heal the wounds that are still open, not continue to scrape and rub at them, keeping them raw and weeping.

I fucking beat a badass cancer that thought it had the best of me; I have the tools to heal from the battle.

Life is facing my demons

Monday October 2 – Meet the Surgeon

Today, we met the surgeon our care coordinator has chosen for me: Dr. Madorin. She is petite, nice, understanding, patient, and straight with the facts. She felt The Lump and agreed it might be swollen due to the biopsy, which is probably why it hurts.

She confirmed everything that has been told to us to this point. Based on the information we have, lumpectomy is still the best option. She said that MRIs are very good at detecting lymph node involvement, and none was detected.

I told her I was worried it was growing fast. She agreed it could have grown a little larger in the past month, but she thought it was more because it was inflamed from the biopsy.

We talked about bilateral mastectomy and referral to a plastic surgeon so I can discuss my options and questions with him/her about reconstruction or breast lift with the lumpectomy to make both sides match.

She said chemo would shrink The Lump, and she has even seen them shrink to nothing. But she warned that even if that happens, the surrounding tissue would still need to be removed to ensure clean margins. She said I may even notice a change after my first cycle.

We talked about lymph node involvement.  I was under the impression that if by the time surgery happened in 5 months or so, my lymph nodes did show signs of cancer, I would have to have a mastectomy.   Dr. Madorin said no, she would make a separate incision in my armpit area and take the lymph nodes from there.  Two scars, but I’d rather have that than a mastectomy if I can avoid it.

We talked about surgery and how I felt a mastectomy or bilateral mastectomy without mitigating factors suggesting these steps should be avoided.  Why would someone want to put themselves through that much surgery if it really is not necessary?  She agreed, and she told us that studies show there is no increase in recurrence with a lumpectomy vs. mastectomy.

If genetic testing results come back negative, I am to call her to schedule a follow-up 6 weeks prior to the last chemo treatment so we can start the scheduling process for surgery and reconstruction/lift with the plastic surgeon.

If genetic testing results come back positive, I am to call her to schedule follow-up 8 weeks before the last chemo treatment so we can start that scheduling process for surgery and reconstruction if I decide to go that route.

Still so many variables.  Taking my cleansing breaths and reminding myself, one day at a time.  Slowly, that grey dragon of anxiety and fear settles and fades.  It’s still there, but not as strong.  It doesn’t try to choke me as often, stop my heart, squeeze my innards.

Life is on hold.

Tuesday 9/26 Text Message exchange with a cousin

Hi!  I heard about your news.  I’m so sorry.  I’m curious, since I help diagnose breast CA, what exactly was the diagnosis and stage?  All my best and keeping up the positive vibes for you!  (two kissy faces)

Thanks!  Here is all the dirty details sent to my family a week ago:

As I am sure all of you have discussed, I found a lump in my right breast right before Labor Day weekend.  I already had a follow up doctor appointment scheduled for the Tuesday after, so didn’t rush to make another appointment.

I’ve had clean mammograms for years with the last one being this past January.

Tuesday, September 5th, I told my primary care doctor about said lump.  She felt it out, we both agreed it was most likely a cyst, and she scheduled me for a diagnostic mammogram and ultrasound on Tuesday Sept 12th.

That lead to being scheduled immediately for a biopsy, that happened on Thursday September 14th.

Today was results day.

The lump is 29 x 22x 17 mm, and located on the anterior side of my breast 8 cm from the nipple.

It is an invasive ductal carcinoma, grade III

It is hormonal receptive negative and the Ki-7 indicator is 80%, which means it is a very aggressive tumor, and there is not the additional plus of being able to cut off hormone supply to help stop the cancer.

It is early stage, 1 or 2.

The mammogram and ultrasound did not detect any additional sites or enlarged lymph glands.

I have already been scheduled for an MRI today to insure no other lesions or lymph gland involvement before my first appointment with an Oncologist.

They are also trying to get me scheduled for genetic testing this week, but think it may not happen until next week when I meet with the Oncologist I have been referred too in my network.

The consulting oncologist we met with this morning advised if I was her patient, she would recommend chemo first, as this type of cancer responds well to chemo, shrink the tumor then have a lumpectomy.

If my genetic testing comes back positive for any one of 7 variants for breast cancer, that would change from her original recommendation to double mastectomy to prevent further occurrences.

I will be losing my hair, I may need radiation treatment, but that is still to be determined by the next scans and the genetic testing results.

I have a great medical team that is at my beck and call should I need them, even if it is only to help me with the doctors that are covered in my medical group or answer our questions.

I have been referred to support groups here as well.

The consulting oncologist and my cancer coordinator both emphasized this is very treatable, curable and temporary.

I am in good hands, and this is being fast tracked as much as possible so they can get a treatment plan in place sooner rather than later.

This is all the information I have right now.  I am not ready to talk about this, and still have to go back to the imaging center for the MRI.  As soon as I know more I will update you all.

Please do not call me today or tomorrow.  I have much reading to do, and I have a full day symposium already scheduled for tomorrow that I really need to attend for work.

This weekend I will make time for phone calls.  I love you all, I thank you all for your understanding and support.

Thanks for the information!  (Kissy face) 

I work in our breast center and perform the ultrasounds to help detect these types of cancers in their early stages (God willing) and assist the doctors to mark the area prior to chemo treatment and sometimes even post chemo.

Historically we’ve seen such a positive response to the more aggressive chemo – the neo adjuvant.  It’s amazing and I’m sure your oncology team have a wonderful plan set up for you.  You answered all the potential questions I was going to ask!

I’m praying the genetic testing is negative.  Do what feels appropriate in regards to double mastectomy.  i know it’s a tough decision yet it can be an easy one depending.

All my love and feel free to text anytime!

Met with the Oncologist yesterday:

Today was the first oncologist appointment (getting to know you, getting to know all about you….)

My Care coordinator picked a good match.  We both like her.

Her assessment of the treatment plan matched the consulting Oncologist recommendations and reasons why

Ready, set, here we go…. (First star to the right and strait on till morning!)

My Oncologists name is Swati Sikaria.  She is a Hematology & Medical Oncology Specialist.  She is taking a very hands on approach to my treatment, and not only will I be going to the same office for all my treatments, but she has me coming back in for a physical check up every few weeks in between…  (that is a whole lot of driving to Redondo Beach).

She is placing me in early Stage IIA for my cancer, only reason for Stage II – size.

She is starting me on chemo first, then we move to lumpectomy (or bye bye babies if genetic test results come back with bad news).  We will go from there for next steps.

Chemo cocktails (Dr. Sikaria already confirmed, these are not the fun 5 0’clock cocktails) will be done in two parts.

Part 1:

Adriamycin &  Cyclophosphamide every 2 weeks for 4 rounds (total of 8 weeks)

She said this will most likely kick my ass for about 4 to 5 days, then I will start to feel better.  There is the possibility to work part time during this cycle, but in speaking with Kim who handles all the disability stuff, variable leave was sounding complicated.  My company is willing to work with me on this.  Tomorrow we will sit down and put together a tentative plan and go from there once this actually starts and we see how I react.

Part 2:

Taxol & Carboplatin (which is a new drug in the chemo arsenal and she is willing to fight the HMO if they don’t approve it.  Really tough on triple negative cancers like mine.)  This will be administered weekly for 12 weeks.  Adding the Carboplatin will kick my butt day 1, and maybe day 2, but I will recover quickly and I can work from home, but cannot go into office when I do this.

This all starts Tuesday 10/10 at 9am sharp.

But wait, there’s more… (and you don’t even have to cover shipping and handling charges)

We get to have Chemo Training….  (they teach me the best way to puke and Robert the best way to hold the bucket?)  That is this Friday at 1pm.

I am being scheduled for a port – yeah, another battle scar! (and less needle holes!)

I am being scheduled for the Genetic Testing (as hinted at above) – has to be approved by the Insurance company, if that fails we will be doing this anyway and paying for it out of our own pocket.  It’s important.  It will be a full genetic mark up, not just the breast cancer genes.

I will be given a self-injectable of Nulasta to take after every chemo session to keep me healthy during all these designer drugs I’ll be doing meant to kill me, oh, wait, I mean the cancer.

And the bad news – genetic testing results take about 3 weeks…  If I come back positive for any cancer indicators all three kids will then need to be tested as well.

That is all the new news for today.  You can all go back to your regularly scheduled programming.

I can add you to my emails I’ve been sending out.  Christmas Eve theme is PINK! 🙂

Thank you!

No problem.  Writing this all out for he family actually helps me understand, helps me remember all the stuff they keep throwing at me, and gives me something to do.  One of my nephews reached out to me this morning wanting to be added to the emails too.

Over the years I’ve heard consistently, the more successful healing for patients with a large support group.  I’m not surprised you have many people behind you!

I don’t Facebook, so the emails are greatly appreciated!

I’m glad your doing the genetic testing as this now changes history for your daughter.  she can start her mammo screenings at 40 as opposed to 50.

Good. I started at 35 because of the thyroid cancer.

you never have a family history before correct?

I see more and more patients who are diagnosed with No family Hx.  And Getting younger and younger at diagnosis.  Youngest I’ve been involved with was 21!  

And by the way your writing is hilarious with injections of song references (laughing crying face)

Nope.  Although my aunt (dad’s sister) when he was talking to her last Friday, told him my diagnosis sounded like exactly what she went through  almost 10 years ago.  She did chemo, lumpectomy that turned into mastectomy because her lymph nodes tested positive during surgery and then radiation.  She’s been fine since.

Gotta keep the humor man!

They’ll likely do a sentinal node testing prior to surgery for node involvement. 

Yes, in my briefcase full of information we received at diagnosis, I was advised they would do the SN mapping.

Now I just have to decide if that happens or the genetic test comes back hinky, do I want new boobs or not.  One of my originals is trying to kill me… (dead face)

I’d go with double mast.  likely of contralateral side getting CA is high.  Again, only based on the results of the testing.

Of course

Left side is more commonly diagnosed initially.  We’ve seen cases after double mastectomy, where CA was found in one breast via imaging or palpable, and path found CA in the other breast as well!  Crazy

OK now you’re just scaring me.  (Scared face)  Having a hard enough time trying to figure out my relationship with my boobs and The Lump and whether I want reconstruction if it comes to bilateral mastectomy.  Don’t tell me about the bought boobs going rogue too!

Of course I have to be different than the norm…. phhhbtt.  Left Boob.  why would the slightly bigger boob go rogue so a lumpectomy wouldn’t be such a drastic change between the two.  That would make too much sense (eye rolling face)

OMG  I AM So SORRY!!  The bought boobs won’t go rogue!  I haven’t heard that happen! Nooooo!

Oh, ok.  Totally misunderstood that then.

This is PRIOR to reconstruction.  My BAD   I shouldn’tve said       aww man (sad face, zip lip face – 4 times)

It’s ok, I make this kind of mistake all the time.

no its just the volume we see.  Either way  I’m so sorry to cause more distress but I’m hearing you and your boobs be it bought or original packing, will be well looked after

Thank you.  No worries, it was only a mild flop of the tummy. (sick face) really!  (Now I get to tease you unmercifully! (Joking face)

Yes      Yes you do !!!   Even as I bring you Middleton (Angle Face and kissy face)

….

you’re more than blessed

Yup!  I have angels watching over me.  they keep leaving their feathers behind.  Found this one on the backseat of my car today.

Life is finding the humour in a deadly situation