Joining the Itty Bitty Titty Committee - Owning My Mastectomy

Hello my friends.  It's been a long time since I posted.  It's been almost 6 weeks since my mastectomy and I have gone through a lot of spaces since then.  The bottom line is I'm all good.  For those of you who are squeamish about medical stuff, there is nothing too descriptive below, I promise.

The Mastectomy
On June 24, I had a modified radical bilateral mastectomy. This means they removed all breast tissue from both breasts. The right side, where I had the cancer, had all breast tissue, including the nipple, removed, as well as a complete lymph node dissection (all of the lymph nodes under my arm that my surgeon could find were removed). My left side, where there was no cancer, had all breast tissue removed prophylactically (to prevent me from ever getting breast cancer in that breast).  I was able to keep the nipple intact.  There were two parts to the surgery - the breast surgeon who removed the breast tissue, and the plastic surgeon who inserted the expanders and drains (more on the expanders below) and sewed me back up.  All told the surgery took about 4 hours, and I was in recovery for about 3 hours before they moved me to my room.

I was in the hospital for 3 days, where I was on morphine and then Percocet. My time in the hospital is a blur, a drugged haze. I do remember, however, that my pain was very well managed.  There was discomfort, but never blinding pain. Once I got home, the next week was also a drugged haze. Again, more discomfort than pain. Within two weeks I was up and about.  After four weeks I was feeling pretty normal.  The big thing was being very easily exhausted.  Even now, I get tired much more easily than I used to be before this whole cancer adventure, but I have more and more energy every day.

Last Friday I went in for a second procedure.  My plastic surgeon was not happy with how the incisions were healing, and she opened them up, irrigated the inside, replaced 25% of the graft on the left breast, closed it up and attached a vacuum tube with a battery pack on the dressing for each breast to speed up healing.  After a week the dressings were removed and the incisions were healed better than they had been in the first 5 weeks after surgery.  I still have the stitches in to ensure complete healing. My surgeon guesses that because the surgery was done only 12 days after my last chemo, my body's healing abilities were slowed down significantly.  I'm all good now!

The Pathology
According to my breast surgeon, everything is going according to plan (to which my brain screams "Plan?!?!?! None of this is going according to plan!!!). In other words, if there is any cancer in my body, they can't see it.  And if there is any cancer they can't see, between the radiation and the antibody injections I'm getting through February, those cells will DIE DIE DIE.

So what did they find in the tissue they removed?

In the breast tissue, there were isolated cancer cells, with clear margins.  In cancer speak, that means that there was plenty of healthy tissue around those cancer cells, so there is little to no risk that it spread to surrounding tissue, like my chest muscles.

As for the lymph nodes, my surgeon removed 16 nodes. Of those, 5 had microscopic cancer cells. My oncologist reassured me that means IF the surgeon missed any lymph nodes (and he was pretty sure he got them all), and IF any of those lymph nodes have cancer cells,  the radiation I will soon be starting will handle those.

My (Long Awaited, 24-hour) Breakdown
A week after surgery, I had an appointment with my breast surgeon who told me the pathology.  I started crying from joy when they told me.  And then I didn't stop crying.  The whole way home, through lunch (in a restaurant, no less!), and into the night.  The next day, I had an appointment with my oncologist for the antibody injections. I was still crying. When I saw him, he gave me a hug and I started sobbing in his arms. I told him it wasn't about the mastectomy - I was fine with that. It's just that, for the first time since this entire thing started, I was convinced I was going to die. I thought my doctors were lying to me, and that I was going to die (which, incidentally, besides being ridiculous and highly immoral, is also illegal.  They could lose their licenses to practice medicine if they did that.). He put me into a private room where I kept crying. A few nurses came in to speak with me and check up on me - we've all gotten to know each other over the months, and they knew how out of character this was for me.

During my injections, my chest started contracting and I started having trouble breathing. I thought I was having a reaction to the injections.  I had my husband (who was with me for the first time at the chemo/injection center) call the nurse, who came in and stopped the injection immediately and started checking my vitals, which were fine.  I asked the nurse if I could be having a panic attack.  She said she thought that's what it was.  She asked if I wanted to see the social worker and to see if she could get the psychiatrist in.  I said what the hell - I'm no dummy, and I knew I was having an emotional breakdown.  She asked if I wanted an anti-anxiety drug.  Hell yes!

Long story short, I had a real, bonafide panic attack.  I had never had one before.  It was pretty crazy.  The psychiatrist didn't feel a need to prescribe anything other than the as-needed anti-anxiety pills I had sitting in my purse. I haven't had one since. And I believe my doctors now.

I have to give my psyche credit. I really chose the right time to lose it.  It was after the hardest part of my treatment (all of chemo AND my mastectomy) was complete. It was after my medical results matched what I wanted to hear. It was while I was in a hospital environment where I was comfortable and where all medical resources were readily available. It was the one day my husband was with me (he'd always had work previously), the man who is my rock and the person on whom I lean and rely to keep me calm and related to reality. It's because of all of these things, I'm sure, that my breakdown freakout only lasted 24 hours. There was nothing, in reality, to keep it going any longer. There was and is nothing unsure about my survival.  And for that I'm grateful.

The Boobies
So what's going on with the boobs now? What do I have? What do they look like? Feel like? How bad is the scarring?

What I have in place right now are called expanders.  They were inserted beneath my chest muscles and attached to the skin with a skin graft type thing.  They are temporary, only until I have reconstruction surgery, which will be next summer.  I have to wait until radiation has been over for at least 6 months. The purpose of the expanders are two-fold.  First, they are a form of fake breast - I look like I have breasts. They're significantly smaller than what I'm used to, but I'm not walking around feeling like a pre-pubescent boy. It helps the ego. Second, they keep the skin stretched taut, holding the space for when I have my reconstruction surgery. They feel like those little blue handball balls. It can be a little uncomfortable - almost like I am wearing a pliable plastic bra. They don't move. There is no bounce, no nothing. Which also means no need for a bra. Woo hoo! (Note - I feel naked without a bra. Kind of like going commando, lol. I've been wearing a bandeau - a whole new world for me!)

Scarring wise, it looks a million times better than I had feared it would look. Each breast has one incision. On the left breast, where I have my nipple, it starts at the bottom of the nipple and goes down to the bottom of the breast. On the right side, it starts a little higher up, where the top of my nipple used to be, and just like the other, goes down to the bottom of the breast.

Possible Risks for the Future
There are a few. In order of importance:

First and foremost on my mind is, of course, recurrence of the cancer. Or any cancer. The big milestones are 2 years, 5 years, then 10 years.

Second is possible side effects from the chemo, the antibodies, and radiation down the road.  There are possible heart issues, that's one that I know about.  I'm not too concerned about that right now as it was a no-brainer choosing between chemo and possible future side effects.  The fact that I was so healthy also decreases the chance of having those side effects.

Third is the risk of lymphedema. This is a blockage within the lymphatic system which causes lymphatic fluid to collect and would cause my arm to swell.  This is a condition that, if it develops, can cause a lot of pain. I'm banking on it not developing; however, it is still a risk. I'm also at higher risk of infection in that arm because I (hopefully) have no lymph nodes in my arm, which are an important part of the immune system. As a result, I cannot have any medical procedures done on my right arm.  This includes having my blood pressure taken or having any blood drawn from that arm.  I also will have to be very careful getting manicures, and make sure that the place I go uses sterile equipment.

What's Next
Radiation.  The final leg of the trifecta.  I should be starting within the next two weeks or so.  It will be Monday through Friday, for likely 28 sessions. It looks like they will be radiating two areas - the breast and the shoulder, which between them will get my underarm, where the lymph nodes were. I had an appointment with one radiologist, and he seemed good. I'm going to meet with at least one more before I choose, and I have to make sure the rest of my team agrees with the treatment. They say it will make me tired, but nowhere near chemo tired. Bring it on. After chemo, I can handle anything!

I will continue radiation while I go back to work in September. I'm working all summer to create my units and daily lessons through October at least. Even without radiation, my body is still healing, and my strength is nowhere near where I'm working to have it be, so I'm working to have things planned out everywhere as much as I can to ensure success in all the things that matter to me.

I'm also continuing antibody injections every three weeks through February. There are two: herceptin and perjeta (a new drug that came out within the last year). These two are not chemo, and have essentially no side effects. The injections take a little over an hour. They attack the HER2 (which is a gene or something - google it and see if you can explain it to me, because I'm completely lost in trying to understand it), which is what caused the type of cancer I had.



And that's it for now.  My journey with cancer is nowhere near over.  I still have a road ahead of me, and I will continue to share it with you. It looks like the hardest part is behind me, and I thank G-d for that every day, while I pray that I will never have to repeat it.

Check your breasts.  Go see your doctors. And then go out and live your lives.

Love to all of you, and thanks for reading.

XOXO

How I learned I had "The Cancuh" - Timeline of a Diagnosis (Part I)

I've gotten a lot of questions from a lot of people (and that I myself asked...) that went something along the lines of WTF? How do you have cancer? How did that happen?  You breast fed two kids, that's supposed to reduce the risk! You don't smoke and eat so healthy! You're so young! You're not even in a high risk group! (I'm not - I am the first person in my immediate and to a certain extent somewhat extended family to have breast cancer, even though there are some more distant relatives who were diagnosed.  In addition, as far as I know, I am the only person to have it pre-menopausal). Well, I'm still not sure of the HOW (although there are some theories, like living down the block from ground zero for a few weeks...), but here is the basic timeline of the WHAT (as in what happened):

Late July, 2013 - annual OBGYN check-up. All clear.

Early August, 2013 - my daughter Raina pushed on my breast as she was getting up, and it hurt.  I felt a lump.  I called my mom, freaking out.  I made an appointment with her breast surgeon (although she'd never had an issue, she's always had cystic breasts and thus had a surgeon).  Made an appointment for the next week.

Mid-August, 2013 - went to see breast surgeon.  He felt lump, said it did not concern him in that it had no 'markers' of cancer (it was even, circular, moved around, and it hurt, and cancer usually doesn't hurt). Still, he told me to get a mammogram, but said there was no rush. Within the next month would be fine.

August 2013 -January 2014 - it kept getting bigger. I kept putting off getting a mammogram. It hurt, and the last thing I wanted was to have it squished between two plates. And I was sure it was nothing. And hey, I'm a mom and I'm busy and I have a million other things to do.

Early January 2014 - go to OBGYN for completely unrelated issue. While I was there, I asked the doc to check it out. He repeated what the breast surgeon said - he wasn't too concerned, it didn't have those markers of cancer, but GO GET A MAMMOGRAM AND DON'T PUT IT OFF - he said he felt it was at least 4+ cm.

Mid January 2014 - made the mammogram appointment.

February 7, 2014:
7:45 am appt - went in for mammogram, and sonogram (both were scheduled simultaneously because of size of mass).  Confident as anything.  I was so sure it was nothing, I went by myself.

8:15 am - mammogram. The squishing hurt nowhere near what I thought it would. Not too bad.

9:00 am - sonogram. I flat out told the tech I was sure it wasn't anything. She wasn't so sure. She had to use two sonogram screens put together to get a picture of the entire mass.

9:30 am - The doctor came in (where I go, when there is a known irregularity they have the doctors read it right there) and said the mass was 7.6 cm (what I HEARD and LIVED WITH the next few days was that the mass was 17 cm!!!), and he wanted a biopsy. I asked him what he thought, in his opinion. He said he thought it was cancerous, and that because of the size of the mass, I would likely need a mastectomy. (Now, for those of you who don't know me, I'm a no-nonsense, don't BS me kind of woman. Always have been, and always will be. I don't know if this is the answer he would have given everyone, but it's the answer he gave me - I wasn't playing games). I asked him if this was going to kill me.  He said no.  I said "ok then, we can move on."

9:32 am - the floor drops from under my world

9:35 am - I got dressed and waited in the waiting room to make an appointment for the biopsy.  Texted my friend Roberta and dumped everything on her.  Everyone needs a friend like that, who you can just text-dump things on.

9:45 am - go in to make appointment.  There were two wonderful ladies there - Emily and Nancy.  It was a small room, and we all spoke a bit, looking for the first appointment available.  At one point I looked at them and said "I'm doing a really good job of holding it together over here, and I'm not sure how much longer I can do it..."  and then I burst into tears, sobbing for I don't know how long.  I think I just said over and over "I have two babies, one is five and one is two..."  These two women...  I can't even state how wonderful they were.  How important they were.  They sat there and comforted me for probably close to 45 minutes.  Emily hugged me and spoke with me.  Nancy told me stories about women with breast cancer who survived and lived happily ever after.  They did not let me leave that room until I was calm and ok. I made my appointment for 6 days later, February 12.

10:30 am - walk to car, call husband.  No answer.  Call my mom, speak with her.  Call my husband's job and have him paged.  Speak with him.  Texted sister to call me when she got out of work and could have a conversation.

11:00-2:20pm - go to work.  I know, sounds crazy, but I was alone and scared and had no clue of what to do, and I knew that going home to be by myself would be the worst thing to do.  And it was the best choice - I was surrounded by friends who were supportive and I was able to get right into my routine of teaching.

February 12, the day before my biopsy appointment - a snowstorm was on its way, scheduled to arrive that night, and I was nervous I wouldn't be able to get to my biopsy appointment.  On the advice of my colleagues (who actually came to the door of my classroom while I was teaching to tell me this! What love! :-), I went to the breast center after work to see if they could fit me in.  As soon as I got there I asked for Emily from the other day.  She, along with the doctors, found a way to fit me in.  They stayed late to make sure.  They biopsied two spots on the big lump on my breast, and an enlarged lymph node.  Amazing people, I tell you.  I also gave Emily my phone number.  She's been texting me and checking up with me ever since.  I love that woman!

February 14 - Valentine's Day - Got the results.  I went with my sister and husband while my mom watched the kids.  Clearly, the results were positive or this entry would not exist.  Interestingly, the results for the lump in my breast were something called DCIS, which is not actually cancer but pre-cancerous.  The results for my lymph node were positive for breast cancer.  I learned that what this means isn't that there wasn't any cancer, but rather the large mass wasn't 100% cancer all through, and the biopsy had not gotten the part with cancer.  However, I learned that there is no way there would be cancer in the lymph nodes if there is no cancer in the breast.  I also was quite clear that it was an aggressive, fast moving cancer that had already spread, and I knew I wouldn't know how far it had spread until I got a PET scan.  When we learned the news we were in a room with the doctor who had done the biopsy and a nurse.  My sister (who is getting her MS in Health Ed. and had been doing research after banning me from going on the internet) asked a whole bunch of questions, and my husband and I just sat there (I have no clue what he was thinking... maybe I should ask).  The nurse told me she would not be able to schedule me for anything with the surgeon until Tuesday because it was a 3-day weekend.  My mom told Jason and me to go out together for dinner, and we did.  Not quite the most romantic atmosphere ever for a Valentine's Day date, but we did enjoy some sushi and some time together. This was officially the beginning of the most trying and difficult week of my life.  Not because of anything that happened over the next week, but rather the not knowing - not knowing how far it had spread, not knowing if it would kill me, not knowing what this new journey I was on was going to look like.  I was walking around for the next week feeling like a ticking timb-bomb.

And that's it for Part I.

Part II will be meeting the doctors who would save my life, getting ready for and starting treatment, all the way up to now.  And I promise it will be more upbeat!!!

Thank for reading and following!
XOXO