Month: October 2017

Tuesday September 26 – Support Group

We went to our support group meetings. My husband went to his room at the Cancer Wellness Community, and I went to mine. There were about 14 of us total in my group. There was one other “new” person besides me. The group leader had the “veterans” introduce themselves and briefly describe their diagnosis and treatments. Then it was our turn, the two new ones to the group.

There were women there in various stages of hair regrowth or loss, and one gal who had not been to the group in 6 months and they were surprised to see her back. Once you join a group, they ask you to continue going until 18 months after your last treatment, whatever it may be.

As the women took turns introducing themselves, it became evident that their original diagnosis and treatment plans all changed to add additional therapy to their original plan. Those who planned lumpectomy ended up with full mastectomy or even double mastectomy, and so on. One woman now battles lymphedema. This happens randomly when the lymph system stops cycling lymph in that area due to trauma from surgery. This builds up in the surrounding tissue, causing swelling. There is no cure, but some things can be done to help deal with the swelling and discomfort.

I was asked about my thyroid cancer and told them about my experience with that briefly. And around the circle, the discussion kept going, bone pain from Neulasta, nerve pain from the chemo setting in after the second to last round. Being tired, ready for it to finally end. The astonishment at how long I have been scheduled to receive chemo – 5 months. Most of them, it’s been two, maybe 3 months of chemo. Even the beautiful woman to my right said she was diagnosed with the same thing as me. She only had 6 cycles of chemo, three of the drugs that I will be having. She had to have a mastectomy. I don’t know who is more worried now, her or me.

Every one of them has opted for reconstruction.

One was talking about how happy she is to get her eyelashes back; they are finally starting to grow. At this point, about half an inch of hair had regrown on her head.

As I sat there with all my curly red hair, and my fun, blue, green, pink, and purple peeking out from underneath, I realized I love my boobs, and I didn’t want anyone taking them from me. If they do have to go so I can live, I think I may want reconstruction. And all of these women have terrified me. What is going to happen to me? Can I do this? I have always thought of myself as strong, and I can take this on, but oh my God, I can’t do this. I can’t cut off my breasts; I can’t lose my eyelashes! I’m going to lose my fucking eyelashes, my beautiful, thick, long dark lashes that frame my blue eyes and help hide my hooded eyes so they don’t look small. Take my hair, take my eyebrows, and take all my body hair, but I can’t lose my eyelashes….

I don’t think they notice how withdrawn I’ve become during all their talking.
On it goes; they talk about recurrence after being done for 6 months, waking up from surgery, finding the worst-case scenario has happened, scars that have to be repaired, additional surgeries, mouth sores, bone pain, and losing your eyelashes. I can’t do this. Just sit here, be calm, and don’t show them how your insides have turned to jelly. All these women have survived; you can do this. Oh my god, I can’t do this.

The group is done. I smile and thank those who come to say goodbye; I grab my bag and sweater and head to the front to meet my husband. My husband is still in his meeting room. I can hear them talking; he is talking. He is talking to one, maybe two other people, I think. He’s connecting; they are sharing. I, on the other hand, am a quivering mass of overwhelming anxiety, fear, and doubt, and I am going to lose my damn eyelashes.

He finally comes out. He is still talking with one of the guys from his group. He is bonding; I am falling apart. We’re being asked to exit the building so they can lock up. My husband gets a phone number; he’s making connections. This man who thought he would not fit in would not belong is belonging.

Goodbyes are exchanged, and we head to our car. He’s holding my hand, he’s telling me about his group. I just keep nodding, uh-huh, yeah. Then he asks me how I am. My lungs don’t work, all that gray and red fear and anxiety is no longer a tight little ball in the corner of my gut, it’s free, flying throughout my body, my knees want to buckle, my ears buzz, my heart feels as if it has stopped. All this starts to leak out of my eyes. I squeeze them shut, and all I can do is shake my head. No, no, I am not alright. He asks me what is wrong, all I can say is “It’s just too much, it’s too much, I can’t do this yet, it’s too much….” and I crumble and fall to pieces. He’s holding me and saying he’s so sorry. He didn’t mean to break me. He made me do this, and I am broken.

I am so lost. I don’t know how to pull this together right now. I don’t know how to stop the falling apart. It was the damn eyelashes… He’s holding me and telling me we can do this. It doesn’t matter what I physically lose in this process, we will survive this, and be stronger on the other side. He’s getting me to talk, what was it that was so overwhelming? It was all of it. I realize I am in mourning. I am mourning the loss of my life as I have known it to this point. I am mourning the loss of my security, knowing I had beat cancer, I would live a long life watching my family grow, watching our grandson grow, learn, fall in love, be heartbroken fall in love again, have a family. Grow old with my husband. Now all that could be gone. Uncertainty, tests, and anxiety for years until I know this is beat yet again. Mourning the loss of my breasts, which I realized in a moment in that room that I love. I love that I have nursed three children from them and that my husband knows how to touch them just right. I love their weight and shape. How they look in my clothes. I am morning, and they will forever be changed from this. If I only have a lumpectomy, it will change one, and the other will be changed to match.

I am mourning the loss of my innocence in dealing with cancer at this magnitude. I am mourning that I have to know all these things about chemo, and nutrition and lymph nodes, losing my hair, and regrowing eyelashes, dry mouth, nausea, bone pain, exhaustion, battling mouth sores, and radiation burns and surgery, scar tissue, infections, and lymphedema…

Life is broken, life is sad, life has kicked me when I was down.

Monday September 25 – Oncologist

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

  1. My Care coordinator picked a good match.  We both like her.
  2. Her assessment of the treatment plan matched the consulting Oncologist’s recommendations and reasons why
  3. Ready, set, here we go…. (First star to the right and straight on till morning!)

My Oncologist’s name is Swati Sikaria. She is a Hematology and Medical Oncology Specialist. She is taking a very hands-on approach to my treatment. Not only will I be going to the same office for all my treatments, but she has me coming back in for a physical checkup every few weeks in between… (That is a whole lot of driving to the other side of the hill.)

She is placing me in early Stage IIA for my cancer, the main 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 the next steps.

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

Part 1:

Adriamycin &  Cyclophosphamide every 2 weeks for 4 cycles (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 of working part-time during this cycle, but in speaking with the patient advocate who handles all the disability stuff, variable leave sounded 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.  It is tough on triple negative cancers like mine.)  This will be administered weekly for 12 weeks.  Adding the Carboplatin will kick my butt on day 1 and maybe day 2, but I will recover quickly, and I can work from home, but I cannot go into the 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 1 pm.
  • I am being scheduled for a port—yeah, another battle scar! (And fewer needle holes!)
  • I am being scheduled for Genetic Testing (as hinted above) – it 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 markup, 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 three 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.

Life is preparing for battle

Saturday, September 23 – Sleep and Disney

As it is now in my life, sleep is just a brief passing during the night. I fall asleep but then awake between 1:30 and 2:00 a.m., fall asleep sometime after four a.m., and wake again before dawn. Rather than toss and turn and possibly ruin my husband’s sleep, I get up and gather myself to face my family, albeit over the phone.

Since Mom lives the furthest and is three hours ahead, and it is just after 6 a.m., I call her first. I thought for sure she would answer, so I left her a voice mail. Now what? Then, my phone buzzes; she is returning my call.

We discuss The Lump, how I am coping, my doctors, and all that.  My husband, how is he?  The kids, does the oldest know?  She has to ask this as our oldest is not speaking with us.  He has deemed us the root of all evil in his life or something to that effect.  He is lost and hurt and lashing out.  Something he should have done in his 20’s but waited until his 30’s to start.  My mother thinks this is something we should fix, or at least she used to tell me we had to fix this; we’re the adults.  I think she now realizes, we cannot fix this, this is something our adult son needs to come to terms with in his own life.  No parent is perfect.  We all make mistakes.  Some are bigger than others, and kids don’t come with an owner’s manual.

We all go into parenthood determined not to be like our parents or not to make the mistakes our parents made.  However, I quickly learned that we make our own.  Nothing prepares you for all the things your children will do, the mistakes they will make, and how you will react.  Nothing prepares you for the fear that comes up when your child walks to school on their own for the first time or goes off on their bicycle beyond your vision, and so many other instances where your brain can just imagine all the bad things that can happen.  It’s hard to let them go, to let them make mistakes, be hurt, learn, grow.  Moreover, each one is different.  Each one finds new ways to illicit that fear response, to push your buttons, and to bring on the anger and frustration.

As our children grew up, we told them we were not perfect. We apologized for the times we reacted instead of acted, for the times we were wrong. We told them that as parents, it was our job to find new ways to emotionally traumatize them from how our parents emotionally traumatized us. It would be their jobs as adults to get off the cross, build a bridge, and get over it.

The oldest has been hurt by so many little traumas in his life.  Some were caused by me specifically, some by us, his stepfather and I; we were just trying to do our best with what we had.  In addition, his biological father has contributed to those hurts too.  His siblings do not understand how he can lash out at us in this way to turn his back on his family and walk away.  I understand he’s taking out his hurts on those he knows in the deepest recesses of his heart, who will still love him when he learns how to deal with his traumas and starts to heal.

So, yes, I have told the oldest what has been happening.  I do have a way to communicate with him if necessary.  I cannot make him respond, though.  His responses to date have been almost nothing.  Just an acknowledgment that he has seen my communication.  My mother is angry with him for this.  She wants to call him and give him a “talking to. ”  I ask her not to do that.  She is his grandmother.  Her job is just to love him unconditionally, no matter what difficulties there are between us.  She asks me if I am mad at him for such callous behavior.  I tell her, no; I am not mad at him.  I hurt for him.  This is not something I can fix for him, and I know as much as he says his life is good and he is happy with those he has chosen to surround himself with, I know he is masking the pains that he doesn’t want to face.  Until he does, this cannot be fixed.  And he will continue to hurt and continue to be alone among all his friends and lovers.

We move on, talk about other realities, and after a while, we say our goodbyes.

I text my cousin, she is more than my cousin, she is my sister.  Having grown up in a house with four brothers, having my cousin as my “sister” was nice.   I know she and her husband are spending a weekend away, and they are busy doing their fun things without their kids.  I tell her to call me when she has the chance, I am ready to talk.

My husband is now up, so I should finish getting ready for my day. I need to run some errands, shop, and go to the bank, and take a nap. Our plan is to go to Disneyland to see the Halloween decorations and possibly watch the fireworks.

Before I leave, I call my dad.  They are at the club, getting their exercise, and they will call me back later.

While running the errands, my parents call.  We discuss what has been diagnosed and then my dad tells me his sister, my aunt, when he was telling her, that she said it sounds just like what she had almost 10 years ago.  She just told him about it!  Wow, I am totally blown away.  I cannot imagine not telling my siblings about a cancer diagnosis, going through with chemo, surgery, and everything, and not even telling them.  Well, now I need to go back and update all my medical histories.  Good to know.

I finished shopping, got home, put it all away, and laid down for a nap before we headed to the park.  My husband decided I needed sleep, so he didn’t wake me when the time approached for our intended departure.  I slept until almost 5 pm.  We went anyway.  As we approached the parking structure on Disneyland Drive, it was blocked by cones and a police car.  Traffic was horrid; everyone was being redirected to downtown Disney parking.  We looked at each other and decided we didn’t want to deal with that traffic, nor the crowds, if it was that crowded in the parks.  My husband asked me if I wanted to do something else, of course!  We’re in the area; let’s go eat dinner at our favorite restaurant.

Away we went. About 20 minutes later, we arrived only to find my boss and his family already seated and having dinner, too. Then we ended up being seated next to them. Good taste! We discussed The Lump and the numerous possibilities that loom ahead of us. He reminded me that I still need to write a bucket list.

We go home afterward, and I feed the stray cat that adopted us years ago.  He doesn’t really come into the house, but the backyard is all his.  I call him the Toothless Wonder Cat.  He’s lost all his teeth but still catches the occasional rodent and leaves it as a present for us.

We have a recliner in the back, and that is where the cat prefers to eat, on the recliner and then in our laps.  I fell asleep out there.  Thankfully, my husband woke us up so I could go to bed.  Maybe I will sleep the whole night again.

Life is craving sleep

Friday, September 22 – Cancer Support Community

We go to the Cancer Support Community, as Evelyn directed, as Robert insisted.  He has to go with me.  I cannot do this alone.  We meet with several interns there who provide us with a brief tour before we are taken to a room to learn about the center, how they are funded, what services they provide, and for them to learn about us.  I feel small.  I feel insignificant.  I feel lost.  I can do this.  I feel lost…

There are three of us with cancer: a gentleman with bladder cancer and only one kidney, and his wife, who I can tell is desperate to have something to cling to.  A young woman who almost died of Leukemia is waiting for a bone marrow match.  And me, the one with the aggressive, triple-negative breast cancer.

There is another person in our “Welcome” group; her brother is dying, and she is distraught.  Her parents died when she was 7; I gather her brother raised her.  And my husband.  My black and white, sarcastic, dry-witted, loving husband.  The man who thought at a way too early age that he would not live past 50 had a bucket list by age 10 and started working on it by 20.  This deep-hearted, compassionate man who hates drama hates dramatic, over-emotional upheavals.  Who thinks he cannot benefit from being in a group all sitting around feeling sorry for themselves rather than taking some sort of positive action?  I sit next to this man and realize he needs this as much as I do.  We must get through this together and with as much help as possible.

As we’re all being handed the paperwork necessary to fill out to continue with placement in a support group, I tell him if I have to join a support group, he does as well.  There are three support groups offered, three nights a week. One for spouses/companions, one for newly diagnosed breast cancer patients, and one for other cancer patients.  We pick Tuesday nights.  We will start next Tuesday.  We are shown more of the facility.  I am trying to remain calm, to keep the fear-laced anxiety contained.  It bubbles up and threatens to consume me.  With all my willpower, I push it back yet again.  I can do this.  I have so many in my life I can call on for support.  Oh my God, how is this happening to me….

I have to talk to my family about this.  They have been so patient about this.  I still have not processed this, this lump, this process; why am I struggling so much?  I am still so lost, small, and frightened, and The Lump is so big.  How did I miss it for so long?  What is WRONG with me?  I can do this.  I can beat this; who cares if I have no boobs?  Who cares if I have fake ones?  Will I care?  I have fucking CANCER!  Breathe…  I feel like I’m constantly on the verge of tears.

We finish up at the Cancer Support Community, and because it’s National Ice Cream Cone Day, stop for an Ice Cream Cone.  I go back to work.  I should be exhausted.  Sleep is still not coming to me.   Will I still be able to be attractive when this is over?

My husband purchased Pink Die-Cut tape-backed letters and stuck them on the bathroom mirror: Treatable, Curable, Survivable, Temporary. I love him.

Life is big and scary.

Wednesday, September 20 – Symposium…

I didn’t really sleep.  I fell asleep last night, but I was awake again at 2 am.  I fell back to sleep after 5 am, and I woke up before 6 am.  This is now my thing.  I get ready, I have the Symposium today.  How do I act normal?  My world is upside down.  How do I do this?  My dragon is active, squeezing my heart here, punching my lungs there, kick to the gut, a whoosh through my head, remember to breathe girl, breathe.

I leave for the Symposium like it’s any other day.  A normal day.   You can do this; it’s just another day of the week.  You were looking forward to this.  You can do this.  I arrive at the location where the symposium is being held.  Lots of people I know and recognize, people I don’t know.  I should sit near an end where I can excuse myself if necessary.   Evelyn will be calling with MRI and HER2 results.  She may be able to get me in for Genetic Testing…

Act normal, smile, fake it.  Ten minutes before the opening remarks, my phone rings.  Evelyn.   MRI is clean.  No other lesions or lymph node involvement were spotted.  It’s a relief.  Exhale some of that pent-up anxiety.  HER2 is negative as well.  We’re confirming this is a triple-negative cancer.  And that little bit of anxiety just released is back.  Triple Negative sounds bad.  My husband begged me not to Google anything about cancer.  I will not go down that rabbit hole.

I can do this today.  Immerse myself in the day.  I signed up for this so I could learn more about this system.  I can do this.  I run into Rita.  I worked for her a long time ago.  During a break, it comes out.  I tell her I was just diagnosed yesterday.  She had breast cancer.  Different.  Slow growing, lumpectomy, radiation.  She will help me.  It helps knowing I have someone on my side.  I have her number.  I will call her.  I make it through the day.  I run into a few others.  I told an old colleague who was there as well.  I leave as soon as I feel it is appropriate.

Home.  I’m trying to be normal about this.  My world is no longer normal.  I email the family with the news of the MRI.  Small steps.  We can do this.  We.  We.  Me…  Husband insisted I had to join a support group.  Arrangements are made to be at the Friday morning welcome meeting so we can start that immediately as well.  How do I not have questions?  I do have questions about chemo; I know the basics.  How sick is this really going to make me?  Google that.  I can Google that.  It’s not answering my questions.  Maybe I need to be more specific on my cancer so I can get specific answers on the chemo.  Google: Triple Negative Cancer Chemo.  First sentence up: Triple Negative cancers have the lowest 5-year survival rate…  OMG, close, close, close!  Google is not my friend!  Stop trying to figure out what will happen with chemo.  My anxiety now contains some tendrils of fear, orange, and red, mixed in with the gray.  It is a hard ball in the center of the anxiety, making it heavy and nauseous.   I should catch up on work.  Work takes me away, do not think about that C word.  Don’t think about Triple Negative.  Don’t think about any of it.  Ignore the ball in my gut. 

What if I must have a mastectomy?  Do I want reconstruction?  Do I have to know this now?  What if I need a bilateral mastectomy?  Will they feel fake?  Will they feel at all?  My husband says he will love me no matter what.  He doesn’t love me for my boobs.  He doesn’t care if I have them or not.  But I think he might.  Do I want new boobs if I must remove my real ones?   One, maybe the other, is trying to kill me.  Why?  I should eat.  I can’t eat.  Maybe I’ll sleep tonight.  Do I want new boobs?  Do I want a prophylactic bilateral mastectomy?  I don’t know what I want…  my heart aches.  Will I still be me?  I know I am not my boobs, but I just don’t know how I feel about losing them or replacing them…

Life is broken.

Tuesday September 19 – Result Day

This morning finds me wide awake before the alarm goes off.  How long can I keep this up?  I feel wooden.  I am terrified.  Why am I so afraid?  It’s the unknown, yet known.  I’m afraid because deep down, I know what it is; I just don’t want to acknowledge what it is.  My hand creeps slowly up from my side, and I feel my right breast.  Damn, The Lump is still there.  The steri-tapes I was told to keep on for 5 days are really starting to make me itch.  It’s close enough to five days, so I can remove them before we go.  The anxiety is heavier this morning, and it has spread.  It’s now in my lungs and around my heart.  It’s up in my throat.  I take my morning pills, but I don’t eat.  I can’t.  The anxiety is a dragon unfurling slowly in my body, cutting off my ability to swallow, to talk.  There are moments when I feel like I cannot breathe.

My husband takes my hand.  It will be OK.  The dragon recedes just a bit.  I can breathe again.  We get in the car.  We drive back to the BDC.  I walk up to the front desk to check-in.  I have my pink slip; they look up at me.  “Oh, OK, we will take that.  We will be right with you.”  The first Oh, is filled with dread.  Then the voice turns perky.  My dragon tightens.  I sit with my husband and hang on for dear life.

Evelyn, a cute petite brunette with kind eyes and a beautiful smile, calls us and brings us back to an office, where we are directed to sit at a desk.  Evelyn is calming; she speaks softly.  She says Dr. R will be in shortly to discuss my diagnosis with us.

Dr. R comes in and introduces herself.  I know this is going to be bad.  I get out my notebook from my purse.  I am a visual, kinetic learner, so if I want something to sink in, even doodling will help me if I am seeing or reading something I need to understand.  Keywords and doodles help me commit it to memory if someone is speaking.  Dr. R said I get copies of all the pathology reports.   She’s going to explain what it all means and provide us with a recommendation on treatment.

She went through the pathology report from top to bottom.  As my heart constricted, my ears buzzed, and my stomach flipped.  My anchor was holding my hand, and my dragon was flipping inside my torso.

I have invasive ductal carcinoma.  It’s considered triple negative at this point, but they do not have final confirmation.  This means the current biopsy information provided shows this cancer is not receptive to Estrogen or Progesterone.   We ask what this means.   It means we cannot add hormone therapy to cut off the hormone supply to the tumor to weaken it.  They are waiting on the results for HER2 cells.  These are cells that, if present, are telling the tumor cells to multiply at an accelerated rate.  If this is negative, this means they cannot add an additional medication to chemo that will specifically target the HER2 cells to slow down its growth.  My mind translates HER2 cells to God Cells – go forth and multiply.

This is an aggressive tumor.  My Ki-67 came out at 80%.

Dr. R said if she were my oncologist, she would recommend Chemotherapy to shrink the tumor, lumpectomy, and then radiation.

She asked about family history, and when our response was negative and she learned of my previous bout with Thyroid cancer, she said we should insist on genetic testing for any of the 7 variants that indicate a risk for breast cancer.  Even if we have to pay for this ourselves, as the insurance may not want to cover the cost since I am over 50, get it done.  If I have one of those variants, she would change the treatment recommendation to bilateral mastectomy.

She emphasized that even though people say a triple negative cancer is bad, don’t think about that.  Think about the part that this type of cancer is very receptive to chemo.  This is treatable, this is curable, this is survivable, and this is temporary.

She said I would lose my hair, get a wig, or do whatever I needed to do to feel pretty and keep up my confidence during treatment. I asked about working through this. She didn’t say no, but she seriously did not think it wise and told me I should really use this time to take care of myself. If I wanted to try to work, there are a few who feel well enough to do this, but most do not.

She told my husband that his job was not to always tell me I must have a positive outlook every day. She told him there would be days when she would just need to let everything out, and that was OK. No one can always remain positive every day during this treatment. She has to have the ability to let her feelings out, and you need to be the safe place for her to do that. It doesn’t mean she is losing hope. She just needs to vent.

My anchor, my rock, looked shell-shocked, but he heard Dr. R. He committed to her to let me use him to vent on my down days in this process, and he would understand that I was not giving up.

She asked if we had any questions.  I am numb, I am petrified, how, what, how?  Why?  That dragon of anxiety, the curling gray fog, has engulfed my whole body.  My ears are working, but everything thing seems muffled.  We shake our heads, no, no more questions.  Wait, my husband has a question.  I hear it, but I don’t hear it.  He is trying to emphasize that I will live.  I have cancer.  I have a bad cancer.  I have a cancer that will require chemo, and surgery and radiation, and reconstruction, and, and, and…  I will live.  Dr. R explained that Evelyn would return to review more things with us.

Evelyn comes back in, she explains the diagnosis briefly, yes, we understand.  Dr. R and none of the oncologists who work at the BDC are part of our HMO, but there is a group under our HMO that works directly with the BDC and the oncologists there.  Based on my diagnosis, she has picked one who she feels will be a great match for us, and I have scheduled an appointment with her the next Monday.  Now, for a Surgeon, she checked with my primary care physician, was directed to the preferred surgical group, and matched me with who she felt was the best doctor there for my case, and that appointment has been scheduled as well.  She has also scheduled me for an MRI in a few hours at the BDC.  If there are additional lesions or lymph nodes that show signs of involvement, then I will need to be scheduled for additional biopsy and have those completed before my first Oncology appointment.

Then she opens a 2-inch wide plastic document case and starts going over resources and places to go for research and support groups. She highly recommends the Cancer Care Center, and we really need to get to the first welcome meeting on Friday before we can be signed up for a support group.  And here is information on breast cancer.  This will help you find local resources for wigs, scarves, and hats; here is information on nutrition.  Here is the surgical information, and Sentinel Lymph Node mapping will be done here before your surgery. Here is some information on that for you to read.  Here are contact numbers, and if you want reconstruction, let me know as I will get you matched to a plastic surgeon, and here, and here, and here…  I don’t know what to do, I don’t know what to say.  I’m a statistic, again.

Evelyn explains she is also a breast cancer survivor.   She tells us briefly about her diagnosis and her double mastectomy.  Her sister too.  She emphasizes that everything will be ok.   My heart aches; it will never be the same again.  My right boob is defective.  It’s gone rogue.  It’s trying to kill me. Evelyn tells me she is going to hug me now.  She is tiny, but I will survive. I am terrified. I can’t believe this is happening.  This is not my life.  If this tiny thing can do it, so can I.  I take some of her strength, I need it for the rest of the day.

We take our plastic document box with the handle, filled with way too much information to begin to digest in a few short hours and walk out of the BDC hand in hand, in shock, both of us silently trying to come to terms with what we have just been told. We have about two hours before we have to be back for the MRI. My husband asks me if I want to eat. Am I hungry? No, no, I’m not hungry. Let’s go home.

I called my boss and told him I would not be there the rest of the day.  Explain my diagnosis.  So many questions I don’t have answers to yet.  Can he tell people if they ask?  Yes, there’s no reason to hide this.  It’s my boob….  We arrived home, and my family was all waiting on pins and needles.  I can’t talk to them right now.  I have to tell them, but I am not ready for this.  I will send them all an email and then tell them they have to wait until Saturday before I can talk.   I will text them all to read the email.  My husband, Robert, texts two of the three kids to let them know.   I copied the letter sent to my extended family and sent it to them later.  I also IM the oldest son to let him know.

Letter sent to the family:  “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, the last being this past January.

On 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 led to being scheduled immediately for a biopsy, which happened on Thursday, September 14th.

Today was results day.

The lump is 29 x 22 x 17 mm and is 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-67 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 in the early stages, 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 ensure 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 to in my network.

The consulting oncologist we met with this morning advised if I were her patient, she would recommend chemo first, as this type of cancer responds well to chemo, shrinks the tumor, and 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, and 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 implement a treatment plan sooner rather than later.

This is all the information I have right now.  I am not ready to talk about this, and I still have to return 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 a lot of reading to do, and I have a full-day symposium 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.

Love you all VERY much.”

I head to our bedroom and remove all my jewelry.  MRI, no metal.  I must remove the tiny stud in the second hole in my left earlobe.  It’s really supposed to be a nose stud, but I love the tiny blue chip of color that barely winks from my lobe.  I drop the stud.  I can’t find it.  Fuck my life.

Of course, my mother did not read the messages in order, so she called.  I can’t answer.  I can’t talk; we have to go back for the MRI.  Then my mom pocket-dials me.  I don’t know if this is a pocket dial, as I still cannot answer.  I want to yell at her,” READ THE FUCKING EMAIL”.  I want to yell at the world.  I want to stop the world and get off until this whole thing is over.  I want to wake up from this nightmare.  This is NOT happening to me.  I already had my cancer.  It was easy, it was stressful, I lost my sense of taste, I would forget what I was doing, and I ruined a perfectly good pot and made an egg in a shell catch fire and burnt teabags, but I aced that cancer!  I’m cured.  I should not have to do this again.  Why do I have to do this again?  FFFFUUUUUUUUUUUUCCCCCCKKKKKKKKKKKKKKKKKK!  I can’t breathe.

My husband takes my hand.  The constriction in my chest eases just enough so my lungs can expand yet again.  We have arrived back at the BDC, and now we head to the other door.  The door that says to me,” YOU HAVE CANCER”.  I am no longer just the woman coming in for my annual exam.  Now I am the woman with cancer.  Like I am defective.  I didn’t do things right, so now I have cancer.   I should have exercised more, lost weight, managed my weight, eaten better, and taken vitamins more regularly.  Only drank red wine, not the bubbly or the whiskey….  I am bad. I have cancer. It feels like a walk of shame.

As we walk through the door, I hold my head up high.

Sign in.  Wait, my name is called, and fill out more forms. Wait.  Called back.  I am taken to the dressing room, and the nurse explains how this will go.  This will be an MRI with contrast, so once I am changed, all clothes off, into the provided tie waist pants, and the gown tied in the back, I will be taken to a room to have an IV catheter started.  Once that is done, then I will have the MRI of my breasts, chest, and armpit area done.

As I prepare to change, the nurse brings me some socks to use as well.  She says it’s cold in the MRI room.  I then wait to be taken for the IV catheter.  When the phlebotomist comes to get me, and we go to her little room, I ask her if she has a warm blanket.

“Oh, are you cold?”

“No, but if you want to be able to find a vein, that will really be helpful,” I as I hold up my arm and show her my nonexistent veins.

She agrees; let’s warm up that arm.  As we wait for the warm blanket to work its magic on my veins, I give her the spiel on how this must go so the vein does not collapse.  She takes it all in and says, we’ll let’s start you in a reclining position first, and we will go from there.  She moves the chair around a bit so we can recline it, and then she competently goes to work, finds a vein, takes her time, and in it goes, no hesitation, and we’re done.  I thank her for doing it in one fell swoop.  She thanked me and said all the info I provided helped her, too.  Back to the small waiting room off the changing room, with the warm blanket held to my chest like a life preserver.

The MRI tech comes and gets me.  We go into the MRI room, and she explains how I will lay on the board with my breastbone positioned on a small pad on a bar between two rectangular openings where my beasts will hang.  She will place a pillow under my feet and a small support under my pelvis to help relieve some of the pressure on the breastbone.  My arms will be extended above my head like I am trying to fly like Superman.  One hand will hold a “ball” that will be my signal if I am in distress, squeeze the ball.  There will be three images taken without contrast, then the last image will be with the contrast.  My gown is removed and I lay down on the table, we adjust my placement.  I am provided with earplugs and earphones.  The tech drapes the gown over my back.  She places the ball in my hand.  She hooks up the IV to the contrast.  All set?  Thumbs up.  My breastbone hurts.  I feel exposed.  I feel like I am not a real person.  It’s hard to breathe.  The bed is raised, moved back, and then the tech asks if I’m ready.  No, but I don’t think I will ever be ready for this.

“The first scan will last 4 minutes. Please try to breathe normally; do not take deep breaths.”  Whir, cachunk, cachunk, cachunk, rrrrrrrrrrrrrrrddddddddddddttttttttttt.  Da tat, tat, tat, and on it goes, sounding its loud cacophony as images of my upper torso, my breasts, are made.  “OK, that was good. The next image will be 6 minutes.  Here we go.”  And more noise while I lay there wondering how I got here.  “One more, and then we start the contrast.”  Cancer is not dignified.  You are exposed, raw, and hurt.  Fear curls throughout you while you are bombarded with tests, x-rays, imaging, and chemicals.  You bare parts of yourself to strangers as if you do this every day.  Breathe.  Do not cry now.  Fucking lump.  “And now the contrast.  You might feel a little cold.  This scan will take 20 minutes.”

I am finally done.  My breastbone feels bruised.  The tech removes the catheter.  They use the stretchy cling tape instead of regular bandage tape.  Nice, no itching.  I get dressed, and we go.  I can’t do this.  I am not strong enough.  I’m just a little frightened girl.  We go home.  There is so much information.  I feel like I need to know it all before we meet the Oncologist.  I set myself up on the sofa with my “Cancer Box” and started reading.

I am overwhelmed.  This is too much.  IT’S TOO FUCKING MUCH.  I crawl into my husband’s lap, and he holds me while I cry.  It’s loud, sobbing, snot dripping, heart-wrenching, face swelling, can’t catch my breath agony.  Life is not the same.  Life is hard, life is short, life is unfair.

I don’t eat at all that day.  I can’t.  Finally, it’s bedtime.  I take a shot of Nyquil to help knock me out.  I want, crave, and need the oblivion of sleep.

Life is wishing for oblivion

September 18 Monday… D Day?

My alarm goes off at 6:20 am.  I think I should feel exhausted.  I have not slept a full night since last Thursday when that word was said that feeds the anxiety still curled in my gut, waiting for me to let it loose.  It’s getting harder to control.  I was awake for several hours in the middle of the night, falling back to sleep sometime after 4 am.  I was awake before my alarm went off at 6:20 am.  I lay there ignoring the alarm and check The Lump.  FUCK!  It’s still there.  Damn it.  I get up and get ready for work, packing my lunch.  I have an industry Expo in town that I need to get to try to do some networking.  We need more business.  But I want to get to the office first and catch up on all I missed on Thursday and Friday.

I am trying not to think about The Call.  The call that will schedule us to come back for the results.  The call that will change the rest of my life.  The anxiety pushes from its little corner; I push back.  My boob already hurts.  I can now take more than Tylenol.  Advil is my next choice.  I can take 3 extra strength Advil, which will get me through the day.  I work, get through emails, answer questions, help with billing issues, and check all pending to make sure everything looks right and there are no anomalies.

Boss arrives, we talk, review some things, asked when I’m going to the EXPO.  I told him I would finish up some rate requests, review some things, eat my lunch, and head over there.  Asked about The Call.  Not yet, as I shake my head, my cell phone rings.  Not a number I recognize, but it originated in the city of the Breast Diagnostic Center.  I hold up my finger to pause my boss for a second and answer.  It’s Evelyn from the BDC.  They will not receive the biopsy results in time to schedule a follow-up that day, but they will be in for a first-thing appointment on Tuesday.  “9 am, yes, that works, we will be there.”  Show the pink slip or tell the front desk you are there to see Evelyn.  They will take it from there.  The anxiety perks up, and it starts to unfurl, ready to go, but I am not ready for that yet.  I close my eyes, take a deep cleansing breath, and imagine good, purifying energies coming in, goldish, with a tinge of pink, entering my lungs, spreading through my bloodstream, fortifying my body, adding invisible armor, my protection from bad, and slowly exhaling.  My boss watches all this, and as I turn back to him, he says, “Tomorrow”, and I nod.  “OK.  Let me know how it goes.”

“I will.”

“Will you go back to the EXPO tomorrow?”

“Depends on what I find there today.”

“OK.  Then Wednesday, you have the all-day Symposium on the Software we use, correct?”

“Yes, I still plan on going to that.  I think there are tools we’re not using effectively.  This is a free way to find out what I am missing.”

“Good, we will see you back here for sure on Thursday.”

“Yup.”  And with that, I went back to work.

I like my boss.  I really like my boss.  I love what I do.  There are times when I don’t like my boss.  We have different management styles, and he can be overbearing at times.  He is quick to anger and VENTS.  But he is also quick to calm down.  When he is frustrated or angry, he will not listen.  There is no talking to him.  You cannot explain anything.  You just take the wrath, do what you can to fix the situation that started his frustration, and then present the solution you wanted to present earlier after everything is fixed.

He frustrates me to no end at times.  He makes me stretch and grow and learn new things, even when I don’t want to.  He is fair.  He believes that in a good days pay for hard work.  He expects hard work.  He is so much like my husband.  Cut and dry.  A wry sense of humor.  He’s a boob man.  I know this; he knows this.  He says things he shouldn’t say, but they are the same things I think or would say.  HR rolls her eyes at us all the time.  It feels like we are compatriots fighting the same fight.

He makes me laugh almost as much as my husband.  I respect him.  When he mentions my boobs about whatever we may be dealing with, it is usually funny, makes me laugh, and then I tell him I own his ass.  He laughs and agrees.  As angry as he can make me, and I am sure as hell, I can press all his buttons and piss him off, too, I don’t think I would find a better place to work than where I am now.

I was very happy for almost 20 years to work for a major corporation.  Then they moved all the jobs I liked to Arizona.  And not to a nice place like Prescott or Flagstaff.  I couldn’t do it.  I could not move with the jobs.  So, after almost 20 years with this company, I took the layoff.   Sometimes I think of my boss as almost a second father.  He is a good man.

Anyway, it took me a little longer than I anticipated to go over everything, get emails caught up, and answer all the questions.  I went and retrieved my salad from the frig and ate at my desk as I put finishing touches on things, then packed all my gear up and headed to the EXPO.  I walk in, and of course, I see people I know everywhere.  I’ve been in this industry for so long, and I happen to be the current president of one of the non-profit organizations in our industry, so I have had the great opportunity to meet many wonderful people.

I greet those I know, we chat, promise to call and get together, the normal stuff.  Then I will move on to see if there are any opportunities to grow our business here.  I stop at various booths, introduce myself, chat, swap stories, trade business cards, get goodies, the little marketing gimmicks everyone buys to hand out at EXPOs.  As I turn a corner and come to one booth, I recognize an old colleague.  The previous corporation I worked for has gone through many changes, including a purchase by another company.  Many of my previous co-workers throughout the country have left and gone on to other adventures.  The previous COO and the President of the Americas have started a new company based in Arizona with the primary footprint of the services and goods they offer in my neck of the woods.  As they have been expanding their footprint and providing offerings in other markets, they keep hiring more and more people to help them.  One of my previous bosses, who I loved working for, also works for this new company.  Here was yet another face from my past, becoming my present once again.  It was good to see him.

Once I was done grooming the EXPO, with very little to show for my efforts, but it was nice to have been able to get out there and talk to people I don’t get the chance to speak with very often, I called it a day and headed home.  Home, where we were still in denial about the word that had been spoken that directly relates to the C word. I was barely in the car before I unhooked my bra.  I am still uncomfortable wearing it.  Thank God for Advil.  Any maybe tonight I will drink the rest of the bubbly I opened last Tuesday.  Maybe this will help me sleep through the night.

We watch TV, I go through email again, and I drink the last of the champagne.  The anxiety is getting hard.  It has been this soft ethereal thing curled into a corner of my gut this whole week.  Now, it’s becoming hard, edgy, cutting, and heavy.  How am I ever going to sleep tonight?  I didn’t tell my husband that my primary care physician left me a voicemail earlier when my phone was snugged away in my purse.  She’s received information from the BDC about the biopsy, if there is anything she can do, I am to call her.  I am afraid to call her; I don’t want to know what she knows.

Life is denial for now

September 17 – Sunday, Tick Tock, Tick Tock

Sunday… the kids will be coming over in the afternoon for dinner.  For the first time ever I requested we watch the EMMY Awards.  I limit my award watching to the OSCAR’s.  But Stephen Colbert is hosting this year, and I really wanted to see what he does.

We had the normal banter going back and forth, we ordered Pizza for dinner so I would not cook.  I didn’t wear any type of bra, just a couple of knit tanks under my shirt.  The Lump, it’s still there.  The Lump is still hard and swollen.  My bruising is turning pretty colors.  The Lump is still angry.  The Lump is still there, damn it.  I keep checking, feeling The Lump.  This is unreal.  This is a dream.  I will wake up and this will all go away.  Life will be good again.

 

September 16 – Saturday still ignoring The Lump in the room

I found a sports bra I thought would work, and again, we took our time getting ready and drove to Disneyland to spend time with the family and celebrate my stepmom’s birthday.  The sports bra was a different kind of irritation to The Angry Lump.  The compression put pressure on it, making it ache instead of the cutting into it done by the underwire.  I can’t win here, but taking my Tylenol religiously, I ignored the discomfort and enjoyed my time with my family.  By the time we were done, I was ready to go with loose boob binding from that point forward.  A dull ache like that slowly wears on you.  For me, it makes me tired.  Sleep has always been my first reaction to pain and the general feeling of being unwell.

Life is still ignoring the lump

Friday September 15 – more of the same

Friday is much the same but with no ice.  I am stiff and sore.  The Lump is near the chest wall on the bottom side of my breast.  Very close to the chest muscle.  Moving my right arm irritates the soreness.  I wore a regular bra, and we took our time getting ready for dinner with the family.  The underwire of my bra quickly irritated The Lump.  It was a good night for dinner with my parents and other family.  We skirted the issue of The Lump and why my right boob hurt.  We laughed, shared stories, and ignored the giant lump in the room as much as possible.

Because of The Lump, we decided to limit our activities at Disneyland parks on Saturday and told the family we would meet up with them later in the day to still spend time with them before our dinner reservation.

I was in serious pain by the time we got home.  My bra caused most of the irritation and pain.  The Lump was now angry – hard and swollen.  That curl of anxiety perked its head, but I tamped it back down.  Not yet.  Life was going to be good for at least another day.  But I will get a new sports bra tomorrow, so I won’t have to fight with the underwire anymore.

Life is ignoring the The Lump in the room