One Year Ago Today...

…I was diagnosed with Breast Cancer.

The Details: I had multi-focal disease in my right breast (meaning I had three tumors in the same quadrant of the breast), grade 2 cancer cells, lymph involvement (making me a Stage 2A), estrogen/progesterone positive, HER2 negative, BRCA 1 and 2 negative.

The Treatment: After my initial diagnosis I went through lots of tests (and lots of BS) to get to the treatment phase. Eventually though, I had neoadjuvant chemo (for 5 months, shutter), and a unilateral mastectomy with sentinel node biopsy.  

The Result: I had a complete pathological response to chemotherapy. Meaning, on a cellular level, there is no cancer left. This type of response is somewhat rare which I didn’t realize until recently. It’s very good news actually because studies show that I have a greater chance of “event-free” survival. This is the best outcome I could hope for really.

The Physical Side Effects: Are dreadful and I include my hair in this assessment. Have I mentioned the 18 pounds I gained? If you want an illness where weight loss is a side effect, breast cancer ain’t it.

The Other Side Effects: Cancer effects the whole person: physically, mentally and emotionally. Since I was diagnosed one year ago, I’ve been mindful of caring for my mental and emotional selves. I’ve made big changes and hard decisions, all of which have contributed to my physical healing. It’s all connected, in my experience. I saw healing from cancer as a way to heal every area in my life where I felt imbalanced. I didn’t plan on healing that way, but it’s the only way I knew how to do it.

Today: Before the end of this year, I will complete my reconstruction surgery and have silicone implants on both sides. I take aromatase inhibitors daily. I get Reiki when I feel that I need it, about every 6 weeks.

I rarely drink alcohol and limit my intake of sugar. Don’t worry though, I’ll never be that a-hole at your party who won’t eat your birthday cake with you, I’m totally sharing your cake. But, overall, I eat very well.  I drink a green smoothie daily (fav right now: water, plain fat-free Greek yogurt, 3 cups spinach, pear) I cook at home every day using whole foods and I bring my lunch using same said foods.

I also think about exercising 30 minutes a day, like I should. Ok, I’m still working on this one.  I found a solution, but a few more things need to happen prior to implementation of my program. It will happen though.

My new mantra? Progress, not perfection. I can tell you that over these last 12 months, my life has progressed into a new stratosphere. It is not perfect and I love it, even in spite of my old-lady hairdo.

 

Thanks but...

When I was pregnant with Aidan I wanted to know as much as I could about pregnancy, labor and birth, so I decided to take a lamaze class.

The teacher, Harriet, was about 75 years old. She was 5 feet tall with jet black hair. In addition to knowing lamaze backward and forward Harriet also had lots of interesting stories about how birth used to be in the city.

She told us about illegal home births in Manhattan and in the outer boroughs where groups of women would gather at the laboring woman's home and all help the baby earthside. She shared with glee the first time a man (gasp!) was in the laboring room with his wife. He handcuffed himself to his wife's bed and refused to give up the key. And then there was that time when they all protested in front of city hall to advocate for a birthing center in Manhattan.

All this went down in the late 60's and early 70's and from what I could gather these acts of civil disobedience brought about a sea-change in maternity care in the city. What started them down this radical path? It was for many reasons, but I think it was primarily because western medicine had overstepped its bounds with regards to birthing.

As I have shared before on this blog, having cancer, in so many ways, is like being pregnant and just as those birth radicals observed and responded to the over-medicalization of birth, so have I seen the tendency toward the over-treatment of cancer, and I am responding.

Don't get me wrong, cancer can kill you, so its best to make sure to treat it until it's gone but continuing to treat after the cancer has been cured? I'm not convinced. Which is why I flew all the way to Philadelphia to speak with Dr. Lawrence Solin after I found an article he wrote about this very topic.

Dr. Solin, it turns out, was the perfect person to see. He told me that every opinion could be supported with the current research which says, yes, no and maybe, someone should receive radiation after a mastectomy, depending on the specifics of their situation.

After he said this he want to on talk to me about my cancer and my treatment and about what makes my situation a-typical: I had chemotherapy first.

Rather than go though the details of all the relevant studies and the specifics about my cancer and course of treatment like Dr. Solin did for me, I share with you an excerpt from the paper which helped me make my decision about radiation:

"Similarly, in 102 patients undergoing mastectomy with clinically positive nodes before neoadjuvant chemotherapy and pathologically negative nodes afterward, the risk of chest wall and regional nodal recurrence was between 0% and 10.8%. These locoregional recurrence rates fit into a low-risk category of patients who are unlikely to experience improved overall survival from radiotherapy."

Translation into English: when a gal with Stage 2 cancer has chemo first and it cures her cancer, like completely cures it, like on a cellular level, her risk of recurrence is between 0% and 10.8% and radiation can't make it any lower, because there is nothing lower than zero.

Whereas the short and long-term side-effects from radiation are pretty significant and the risk of getting at least some of those side-effects is pretty high, way higher than 10.8%.

So, thanks Radiation Oncologist, but, I think I'll pass and stick to getting my radiation the old fashioned ways: from space or from a tanning bed. 

What do you think?

News flash: headed to PA today via NYC to meet up with a Dr who specializes in answering questions about Radiation that I have. Specifically, do I need it? Like, really need it? 

The Drs here can't come to a consensus and since I'm not a Dr I need another perspective. 

So, I called an audible, scored a free flight, and am in route to the East coast.

Fingers crossed that I can get some solid info because no matter how much I like my local Dr, I'm not undergoing anything based on someone's spidey sense. Just sayin.

The Morning After

Yesterday afternoon I had my surgery. One doctor removed my breast and the other partially rebuilt it again.

It all went very smoothly, so I am told.

This morning I'm in pain,  but hungry and no nausea, which is progress.

More medical facts when I'm up for it. Just wanted to let you all know I am well.

Love and hugs all around.

Up and up

I'm feeling better and better everyday. Taking good care and preparing myself for surgery, mentally and physically.

Prayers and good vibes welcomed as I move through these next couple weeks.

4 down 8 to go

UPDATE: I had what felt like the stomach flu for the rest of the day. It started right after I posted this. I think I jinxed myself...doh.

This time, I refused the steroids. Best. Decision. Ever. Now I can actually feel what's happening in my body without all the noise from a monkey mind (see post below).

And on this 2nd day I can tell you exactly what I'm feeling: tired. All my bones are made of lead kind of tired.

So I have only 3 things on my list to do today, one of which is done. (Mmmmm...coffee tastes good) Anything extra is gravy. I give myself permission to honor this fatigue.

If you need anything, I'll be on the couch, or on my log chair outside, doing very little. With a big smile. And a sigh of relief.

Monkey Mind

Since I'm not a baseball player, competitive weight lifter, or looking to enhance my performance in any way, I've never delved into the wild world of steroids, nor had I planned to. I always figured I'd leave that to professionals.

Well, cancer will take you down many paths you didn't intend to travel down and these past couple weeks I have been receiving intravenous steroids once a week.

The intention with the steroids is to work with immune system so when it gets kicked to the ground by chemo, it doesn't fall so hard. It also helps with any possible allergic reaction that I may experience from this particular chemo drug.

In these two ways the steroids have mostly done their job. My white count has remained fairly stable and returns within a normal range in only 6 days after treatment. This is good, because it means I can keep receiving the treatments. As you can imagine, I want to stick to the treatment schedule so I can be done with this portion of the program.

Its also mostly kept the allergic reactions under control. I have a mild rash, which is itchy, but if I can keep from touching it, its like any other rash and will heal normally.

So I should write the steroids a thank you note, I guess.

I totally would do this (I'm old fashioned that way) but this drug has some pretty heavy side effects.

Ever head of steroid psychosis? Well, neither had I, until yesterday. After I'd explained to the nurse my strange mental state, she happened to mention it. I would say, given all that I've read about it since I heard the term, I had a pretty mild version.

I'm receiving a relatively low dose, only 25MG, but I also know I'm sensitive to medications. My body metabolizes medicines in a way I find very acute. To the medical ear, this may not make sense, but I know it to be true, even with something mild like Tylenol.

So pharmaceutically speaking, I'm a cheap date and 25MG of steroids have worked their evil magic on me. Yesterday, thankfully, I got only 10MG and can already tell that the monkeys have moved on. If I don't experience any allergic reaction this week, I'm not taking the steroids again.

Speaking from experience as a cancer patient, at the end of the day informed consent barely exists in this field of medicine.

I feel a bit bad saying this because I know my doctor and the nurses do intend to give the best care they can give. However, there is so much information that is simply not provided to the patient and I'm not sure why this is.

I'm not saying that knowing about steroid psychosis would have changed my decision to receive this medicine, but forewarned is forearmed. Had I known about it, I could have addressed it right away.

Instead though, I went through a really rough time. Alone. Too scared to tell anyone about it. And will do anything to avoid an encore performance, a la steroid style.

May it be so.

2 of 12

This is gonna be brief, I've already been writing for a bit this morning and french toast is calling.

Weekly treatments make my dance-card feel really full. I am juggling so many things right now, none of which feel like candidates which I can let fall.

Oh, don't get me wrong, I've let many go. Please don't mind the science experiment growing under my dining table or my piles of laundry scattered randomly around my domicile.

There are some though that can't be dropped nor would I want to drop them.

My Little Critter is medicine for me, so funny and fun to hang out with. He's a load of work though. In my "down time" my tired bones can be found playing "Particles," a made up game which involves scooting around on my butt trying to catch him and steal his magical box. Or holding him on my lap in the kitchen in deep conversation about meal planning.

This morning before I got out of bed we were talking about Samsara and what it all could mean. And then we talked about all the other creation and life after death myths we could think of.

Heavy stuff, pre-coffee. But I love it. That ball will stay in the air.

Hopefully the nausea will stay low-level and the raw fatigue and GI issues will follow suit. May it be so.

In my estimation I'm about 35% though this process. For that I feel so happy!

Round 2 - 1 of 12

In breaking news: I'm not nauseous!

For these next 12 treatments I'll be receiving Taxol every week. Among the biggest side effect women report is tingling in the hands and feet. Among the least reported side effects: nausea. 

I've heard this, from my Dr and the Nurses but didn't really buy into it. I wanted to experience it first hand. And viola! Here I am. I can't tell you how relieved I am. 

Maybe the other side effects will rear their ugly heads after these steroids wear off, and I'll keep you posted on that. But after feeling like I lived on a boat traveling over rough seas for 3 months I can honestly say that a little weakness and tingling sounds aok. 

One complaint I will report isn't about the Taxol at all, but about the premeds. 

I have to get crap-load of Benadryl intravenously because Taxol often causes severe allergic reactions. Luckily, I can tolerate the Taxol. I was less than able to tolerate feeling like I had just slammed a 12 pack of Miller Light and then given a rufi. It came on rather suddenly, made me feel really sick and lasted about an hour.

Since I tolerated the Taxol though they said that they will cut the Benadryl in half next time. So just a 6 pack next time then and maybe no rufi...?

Lastly, a word to those kind people who have agreed to accompany me to treatments over these next 11 weeks...we didn't get out of there until 5:15 pm. 

I think subsequent treatments will go quicker now that I've got the first one under my belt, but I wanted to let you know. This way, if there are conflicts with your family's schedule you can recuse yourself. Know that I totally understand if this is the case and that I love you.

Portal

Today I had a port installed for my next round of treatments. I have 2 freshly minted scars: one on my neck and one on my chest. The one on my neck, I didn't expect and it was a bit jarring, to be honest.

The surgery itself wan't so bad. Not eating for many hours and then being woken up from the best sleep I've had in weeks were the worst parts.

The port will make my life less painful for the next 12 weeks. So this is a case of my present self helping my future self.

One last thing, bendy straws wielded by Bryan contain the most refreshing drinks. Just saying.

Port Authroity

I am excercisting my right to whine like a baby right now.

For the record: surgery hurts way worse than you think it will. Also, having something inserted into you, like a little box for administering chemo, hurts also.

Dr said it will be at least a week before the pain goes away. In the meantime I move like molasses and wince a lot. Its a bummer.

Oh where are you...?

This last treatment marked the half-way point for me, and it was time for a scan. A little how-we-doin check-in ultrasound.

The tech who did the ultrasound and the doctor who read the scans were the same team who I saw three months ago. The same team who discovered the 3 tumors and lymph involvement.

This time, there was not a tumor in sight and the lymph node looked very unexciting. Quite normal actually.

While I can't be sure that the cancer is no longer in my body (only a PET scan could confirm this) I do know that no visible tumors and a normal looking lymph node is wonderful news.

So what next? Do I get to hop on a plane to Tulum this weekended to celebrate by sunbathing and toasting to my everlasting good health?

Not quite yet.

I still have 3 months of chemo to make it through. Then surgery. Then 6 weeks of radiation.

While the common cold may be more annoying (see previous post) the recovery time is way faster. Cancer is a lot of things. Speedy isn't one of them.

Sigh.

Rebound

It’s been over a week since I had my first treatment. I can’t express how happy I feel to have passed that milestone.

Honestly though it wasn’t as bad as I thought.

When I’ve heard about or think about someone undergoing chemotherapy I have always imagined the worst. Namely, if they aren’t walking among us with their turban and pasty skin they are in bed on the brink of death.

Don’t get me wrong, chemo is certainly no walk in the park. It’s poison, there’s no way around that. After the chemo drugs leave your body, in about 2 days, your body is left to recover from the damage. And from what I know about these drugs, that damage is nuclear.

My body, the one who has been working tirelessly on my behalf day and night to keep this cancer contained in the best way it could, now has to deal with the effects of these toxic drugs.

These drugs though also happen to be what I have to endure in order to be cured. So I’ll take them. Willingly, lovingly and give my body every grace she deserves to help her, help me.

And what grace looks like today are the simplest of things: rest, nourishment and time with my family. Internally though it’s been about developing a practice of receiving love. In all its forms: meals, kind words, good thoughts, prayers, hugs, company and companionship. It’s not easy for me, but I’m soaking it all in. Letting you all help me and hold me in all these ways so I can heal.

The gratitude I feel and the love that I feel is indescribable. When someone shows up for you in the moment when you need it most, that is medicine; the best medicine. You all are my medicine and your love is helping me give myself the space I need to heal.

This time next year I will be cancer free and it will be in part because of you. And you. And you, and you. And for this I am eternally grateful.

Love and Muah and Namaste
(my spirit bows to the spirit within you)

PETt'ed

Finally, the results from the PET scan are back.

Good news people: the cancer is isolated to my right breast and right lymph nodes; and hasn't spread into my organs or any where else.

In other words, I have lazy cancer.

Small Plans

Spoiler alert – the following post contains mention of vomiting, hair loss and loss of taste and not in the context of the morning after a long night in Vegas. You have been warned.

Since having cancer I have never had so many people openly comment on my breast size, “Since your breasts are so small, we will have to do this rather than that.” This is said at pretty much every appointment.

I heard it yesterday from my medical oncologist. He said, removing a 3cm section from a larger breast wouldn’t really have a cosmetic effect. However, removing the same section from small breasts, such as yours, will most certainly have a cosmetic effect.

Which is why, along with the Tumor Board in my town, he recommended that I have chemo first to shrink the size of the tumors. Chemo will also off-set the little trip this cancer has taken into my lymph nodes (plural). Thereafter, surgery will take out the effected tumors and nodes. Then, for good measure, I’ll get zapped with Radiation.

Chemo is scheduled to start the day after my birthday. Maybe I’m being petty, but I don’t want to have my first treatment on my birthday. Remember Jesus? Even he decided to have a last supper. I’m going to do the same while I can still taste the food I’m eating.

Yea, you read that right. Chemo is like a nuclear bomb to your body. Pretty much any pleasurable physical experience you can think of is eliminated by the application of chemotherapy. This includes turning off those little bumps on the tongue that allow taste to happen. Out of all the things the doctor went over yesterday, this one was the most disturbing to me: not being able to taste.

I’m also not all that excited about the hair loss. Don’t get me wrong, I love bald heads (hey baby!); I just don’t love that my head will be bald. I guess I can just be thankful that I get to shop for scarves, hats and a couple wigs. Maybe I should be like Mr. Potatohead and get angry hair? (If you’ve watched Toy Story 2 you know what I’m referring to.)

Last but not least on the list of sucky things: vomiting. When I was 30 I basically decided to stop drinking because every time I had even one glass of wine, I would vomit. I don’t know what was up with that, but for a year I made that adjustment and viola! no more vomiting. Then, fast forward 5 years. During the 1^st trimester of my pregnancy I projectile vomited on what seemed like every block in New York City. I’m sure my neighbors thought I was a complete deviant. It was awful. Truly.

All of this is to say, when taking chemo every enjoyable thing about having a body is replaced by almost every pain you can imagine. And then a few more, just like the cherry on top.

Just Be Negative

The results are in: the genetic test is negative for cancer. My genes are clean.

Because of this, the chance of recurrence is much lower and the treatment might even be tolerable. Ok, rose colored glasses on that last one. But this is very welcomed good news. 

One point for me.

Remember that lymph node though? That thing is full of cancer. As are those other two lesions. 

Doh ~ one point for cancer.

Does this mean me and cancer are even now?

Afloat

Did you know that the ballast of a ship acts as a righting device? Without the ballast, a heavy weight at the bottom of the ship, the vessel would sway this way and that, and eventually capsize. The sails on your ship might allow you travel far and wide but the ballast keeps you at an even keel so you can get where you intend to go.

Today, when I heard the pathologist say the cells from my lymph node are cancerous, I teetered. I nodded to her letting her know I understood. She said more words, which I can’t recall, and then she left the room.

I laid back onto the table, turned onto my side in the fetal position, closed my crying eyes and thought: I’m going to die. This may kill me. Soon.

I was capsizing.

As I turned over, Bryan got up from his chair, to stand next to me and hold my hands. That’s when I realized I was actually shaking. Have you ever shivered out of sheer terror? It’s different from shivering from being cold, when I shiver from the cold, the shaking starts in my belly and radiates outward. This shivering originated in my hands and feet and moved inward.

We were like that for awhile, me shivering, sobbing. Teetering on the verge of a shipwreck. All the while, he moved closer to me. Until finally there was that one moment, his arms were all the way around me and everything inside me just relaxed. The tears stopped, as did the shivering. I just knew it would all be ok.

I was righted again.

The ballast of a ship can be made from quarried stone, sand bags, metal weights or water. I suppose if you’re a person, your ballast can be made from just about anything. Glad I had mine with me this morning.

I don’t want to do this alone, and I don’t need to. So, I’m not going to.

Bad things do come in 3's

The MRI and mammogram results are in: the scans are clean. Yea, you read that correctly, no tumor in sight.

I don't know about you but when I heard that, I secretly thought, "that was the easiest case of cancer I've ever heard of. It lasted about 2 weeks and I really didn't feel a thing. Wow, that wasn't so bad." Big sigh of relief.

Not so fast. 

As it turns out, some tumors won't show up on a mammogram or an MRI. Its rare, but it does happen. It happens more commonly in women with small dense breast tissue. Let me clarify something here, dense breast tissue is common in young women. Old women, not so much. 

At the ripe old age of 40 you would think I wouldn't have such problems, namely the breasts of a much younger woman, but there you have it. The tissue in my breasts is so dense that its more or less opaque. 

Getting an image of what's going on inside such dense breast tissue is kind of like driving in fog. Your lights are on and you know there's a car ahead, but you can't really see it. Get closer though, and there it is. Kind of like it appeared out of nowhere. 

Well, in this case, when the doctor pulled her car up to my tumor to get a better look via MRI and mammogram, she couldn't see anything. She was still too far away.

When she hopped into her ultrasound though, out of nowhere she saw the original tumor and two additional ones. A little off to the side, she saw something else which she very scientifically labeled as suspicious. The suspicious thing is one of the lymph nodes under my arm. 

I'm not sure if it was the shifty eyes of that particular node that made her feel so uneasy, or if it looks like it's filled up with cancer. Either way though, having a body part labeled as suspicious is never a good sign.

And, just to cheer this post right up, it became clear to me this morning that having more children will not be an option for me. My insurance doesn't cover the cost of freezing eggs and eggs don't like being hard boiled by cancer treatments. 

AND, on top of all this, I really need to go to the grocery store. 

I'm at a low point right now. I freaking hate shopping.

Update

I saw my surgeon today. What she told me was, I can survive this. That was nice to hear but then she got down to business: We are in the information gathering stage.

I've got more tests tomorrow, I'll give you a hint about which one I have to get first thing tomorrow morning (check a couple posts back). If genetically predisposed to cancer, then the treatment will be aggressive. If not, it will be more simple. Those test results take 5-10 working days to come back. The surgeon strongly suggests not doing anything until we have this information. Measure twice, cut once and all of that.

The other thing I'm having tomorrow is an MRI, the results of which will be returned tomorrow. In that test, they are looking to see if there are any more tumors and to get a good look at the one that we know is there. One report says its 1.1 cm while another says 1.5. She needs good data in order to know where to cut and how much to cut. I want squeaky clean edges all around where she cuts because that means she got all the cancer.

So, we are still in a holding pattern. Until all the information is compiled, I won't know some important things:

• Date of the surgery
• The nature of the surgery: just the tumor (my preference), or the whole breast
• If the cancer is isolated or if it has migrated outside of the breast into the lymph nodes (this information determines what 'stage' the cancer is)
• If having chemo would be helpful (radiation is extremely likely for my type of cancer, so that's a sure bet)
• The extent of just how shitty this whole thing will be

Here's what I do know for certain right now:

• I am feeling the love and support from you all
• All that love is sooooo helpful for me, you have no idea
• I love you guys to
• Really and truly
• I do not however, love pink. Sorry about this last one, but I've gotta keep it real.

Love and Muah

Better Reception

I just spoke with my OB who gave me some additional information about my biopsy. 

I have positive receptors for both estrogen (72%) and progesterone (91%) and am negative for the HER2 receptor. 

Why does this matter? Read all about it here:

http://health.nytimes.com/health/guides/disease/breast-cancer/prognosis.html

 

Here’s a relevant excerpt from the article:

“Hormone receptor-positive cancer is also called "hormone sensitive" because it responds to hormone therapy such as tamoxifen or aromatase inhibitors.

Women have a better prognosis if their tumors are hormone receptor-positive because these cells grow more slowly than receptor-negative cells. 

In addition, women with hormone receptor-positive cancer have more treatment options. Recent declines in breast cancer mortality rates have been most significant among women with estrogen receptor-positive tumors, due in part to the widespread use of post-surgical hormone drug therapy.”

In other words, according to my receptors, I’m not totally screwed. I may even live through this. Imagine that. Wonder what that’s gonna be like?