Mastectomy for Beginners

It's been four months since I had my mastectomy.

At the time I thought I was prepared for it.

I was not.

Looking back on it, the weeks following my surgery were probably some of the darkest of my life....both mentally and physically.

It had been awhile since I had had any kind of major surgery, but I figured that it couldn't be that bad. And I'd heard from many people that the surgery was the least worrisome part of the whole cancer process. So I went into surgery pretty optimistic.

I also went into surgery with the knowledge that I had a great surgeon and a great plastic surgeon. After shopping around for good doctors (a process that was much more stressful that actually having cancer), I ended up with a team out of the University of Colorado Anschutz Hospital in Denver. I was very confident in their abilities which is important when it comes to breast cancer surgery since there are so many different permutations and options for surgery.

Before you go into surgery, you have to know what kind of reconstruction, if any, you intend to have. Not that you can't change your mind later, but it makes things a lot easier if you can combine surgeries and get in any of the prep work necessary done all at one time.

I also had to decide if I was going to have a single mastectomy or a double mastectomy.

All of this seems like it wouldn't be that hard, but it is. There are lots of options. And no one tells you what you "should" do. They only tell you what you "need" to do. There seems to be a trend these days for women to have doubles so they "just don't have to worry about anything anymore." This I guess, is true. However, it also brings twice as much trauma and twice as much loss of sensation.

What I really needed to do was get that big honking tumor out of my boob. After chemo, it seemed like the tumor had shrunk a little. It was still big enough unfortunately that a full mastectomy, not a lumpectomy, was needed. After more tests, though, Dr. K and Dr. A determined that my tumor was far enough back in my chest that I could have a nipple-sparing mastectomy.

In a traditional mastectomy, breast tissue, skin, and nipple are all removed leaving a large scar across the front of your breast. If reconstruction is chosen, skin and/or muscle has to be taken from other places in the body and moved to the chest. Radiation complicates the reconstruction process since it basically cooks the skin and tissue that it irradiates and makes reconstruction much more problematic.

A nipple-sparing mastectomy, though, preserves the breast skin and nipple even though all the breast tissue is removed. The scar I have goes beneath the breast - sort of where an underwire in a bra would go - and isn't really visible once it's healed. I guess this is because my tumor, despite being over 6 cm, was in a good location.

So I lucked out, really. I had been having nightmares about being a Frankenstein's monster and not being able to look at myself in the mirror.

Instead, I woke up after my surgery with the equivalent of a numb, deflated left breast. Not quite as bad as what I had originally imagined, but still not my ideal look. The outside was relatively intact, but all the insides had been taken out. Because I had decided to eventually have reconstruction, my plastic surgeon had placed a plastic tissue expander inside my breast tissue with a small amount of saline inside - so my left side wasn't entirely flat, but it was definitely deflated.

Because I had at least 2 lymph nodes that had shown signs of cancer in my PET scan, I also had about a 2 inch scar under my left armpit where they had removed 17 lymph nodes. Before this whole cancer process, I had never really thought much about what the lymphatic system does. In short, your lymphatic system is essential both both your circulatory and immune systems. It moves body products (like plasma, glucose, proteins, immune system cells, etc.) through your body. It also provides a response to trauma, bacteria, viruses, etc. that invade your body. In short, when you have a swelling response, that is your body sending lymph to the site of a problem. The lymphatic system helps to bring lymph back from the extremities to two major lymph nodes in your neck for it to be cleaned, processed, and sent out again to the rest of your body.

So if you have cancer in your lymph nodes there is a higher chance that you cancer can spread to other parts of your body. Therefore, it's important to get rid of any of them that might have that cancer....as well as those that are a little further down the line that might have microcancer cells that have moved down from the tumor.

Removing lymph nodes brings problems, though, so they don't like to do it if they don't have to. While I was in my surgery, Dr. K did a sentinal node biopsy. Essentially, they find the node that drains directly from the tumor and they biopsy it to see if it has cancer. Mine came up positive, so they did a full axillary lymph node dissection. Thus, 17 nodes gone. Apparently they all come out in one big ball of goop.

Removal of lymph nodes means that your body could potentially have problems draining lymph from the affected area. This is called lymphadema, and it can strike at any time -sometimes years and years after surgery. For me it could cause my left arm to swell up and could be caused by a cut, a bee sting, injury, hot water (hot tub!), or maybe even nothing at all.

So between the removal of the breast tissue and the removal of the lymph nodes, I had a good amount of cutting done in my body that severed a bunch of nerves. At this point, I have no feeling in my left breast, in most of my armpit, and in the back of my upper arm. The feeling is not expected to return. I also couldn't really move my left arm due to all the tissue damage underneath. On the bright side, I no longer sweat from my left armpit, so I'll save a little money on deodorant. :)

After all the cutting, I was in quite a bit of pain for about 4 weeks....especially when I was trying to go from standing to sitting to laying down and back. I also came out of surgery with a pretty bad cough from the intubation they had to do so I could breathe during surgery. This wouldn't have been bad except that when you cough you use all your core muscles which in my case were severely traumatized. The cough was probably the worst physical part of the recovery.

So physically I was dealing with the loss of my breast, disfigurement, pain, loss of movement in my left arm, loss of feeling in part of my body, and the threat of lymphadema. I still had no hair, and felt pretty darn depressed from the weight I had gained from chemo and steroids. Oh, and on top of it all, they put tubes into the surgery site that drain unwanted blood and fluids out of you through suction into gross little grenade shapes bulbs. You have to measure the amount of yucky stuff coming out of you daily until you get to the right amount so the drains can be removed. They hurt, they're gross, and they make it really hard to shower, use the bathroom, or move. It was awesome.

Mentally, I was dealing with all of this PLUS the fact that my lifestyle may have to change for the rest of my life.....AND the fact that I have no way of knowing if this cancer is going to come back in the future and I might have to go through all of this again.

As I said, this was a pretty dark time for me.

I felt the farthest from strong, courageous, brave (and whatever other adjectives people were throwing at me) that I have ever been in my life. I felt defeated. I felt sad. I felt like I had no control over my life. I did not feel like things were going to be "fine" as everyone kept telling me. I did not feel like "I'd forget about all of this once I felt better".

But no one likes a whiner. So, for the most part, I tried to hold myself together.

After about two weeks, I was pretty much back on my feet movement wise. Getting up and down was still hard, and I was on pain killers so I couldn't really drive. I also wasn't very comfortable sleeping. As a side sleeper, having to sleep on my back was very uncomfortable. I couldn't sleep on the hurt side for obvious reasons. And I couldn't sleep on the unhurt side because gravity is a bitch. With limited arm movement, getting dressed is pretty uncomfortable, too. And the drains had to be hidden under bulky clothing because they're gross and no one wants to see that.

But eventually things got a little better. The drains came out (kind of like watching a tape worm being pulled out of someone....those suckers just kept coming!) leaving round little scars. My cough eventually went away (after about 4 weeks), and my core muscles started healing so I could move with less pain.

I went back to work even though I shouldn't have. I wasn't ready. Mentally or physically. Work did provide a little bit of a distraction, but it also made me keenly aware of the physical side of my recovery every step of the way. Having to pretend like everything is ok when you're in pain and have constant reminders in the mirror that you've been disfigured is tough.

Because I had radiation and eventually reconstruction ahead of me, I also started the process of filling up my tissue expander as soon as my incisions were healed. This sucked.

A tissue expander is a temporary implant with a one way valve that can be filled slowly with saline in order to get your breast skin to the proper size. Eventually, the tissue expander is replaced with an implant or with natural body tissue. In a normal body, your breast tissue is on top of your pectoral muscle. However, in order for the body to hold a tissue expander in place, the expander has to be placed under the pectoral muscle. This feels really weird. What this also means is that as the tissue expander is filled your muscle gets stretched. In addition to feeling weird, this is also really painful.

Many women fill their expanders slowly over a few months with about 40 cc's of saline at a time. Because I was at a higher risk of cancer recurrence due to my lymph nodes being involved, I had to get on with my radiation treatments pretty quickly. This meant that I needed to get my expander filled to the right amount as soon as possible. My expander had between 60-80 cc's added every week (sometimes twice a week) for 4 weeks so I could get up to size in time. (Once you start radiation, your skin pretty much gets cooked making it more fragile and tight so it's hard to expand it.)

What this meant was that even as I was recovering from surgery, I was also putting myself through incredibly painful procedures every week. More than once, I found myself sitting in bed crying from the constant pain. The only thing that got me through it was the knowledge that the pain had an end date.

By the time I started radiation I had been through physical therapy so I could get my arm above my head for treatment with minimal pain and my left breast was the size and hardness of a softball. I tried to pretend like I was doing "just fine". Sometimes I was; sometimes I wasn't. I would have been really easy to stay in that dark place. And I'm pretty sure that if I hadn't had such incredible support all around me, I might have stayed there.

Mastectomy is not for beginners. But you don't really have a choice. You have to keep moving forward. So that's what I'm doing.

The Failure of the Pink Campaign

On October 20, 2015, I was diagnosed with Stage 3 breast cancer. There is no breast cancer in my family. I am not genetically predisposed to breast cancer. I hadn't done anything "wrong" to cause my condition.

On May 4, 2016, I had a mastectomy to remove a 6.2 cm cancerous tumor from my left breast. Seventeen lymph nodes were also surgically removed from my left armpit. Two of them were positive for cancer.

Pathology on the tumor and lymph nodes that were removed revealed that the six long months of neoadjuvant (before surgery) chemotherapy I endured did nothing to kill my cancer.

Ahead of me I have weeks of physical therapy to restore range of motion and lymph movement in my left arm. I have 3 more painful sessions of filling a plastic tissue expander under my left pectoral muscle to temporarily re-form my breast while I undergo six weeks of daily radiation treatments. This tissue expander will cause me daily pain and discomfort until I undergo final breast reconstruction sometime next year. It will probably make running intensely uncomfortable, and the missing lymph nodes in my left arm will make it impossible for me to go back to my previous fitness habits. More than a year after my initial diagnosis, I will eventually undergo yet another surgery with a long recovery time to restore natural tissue to my breast.

Meanwhile I will start five years of endocrine therapy that will throw me into menopause and cause painful, stiff joints and possible bone loss. I will also take a year's worth of endocrine superchargers that may cause side effects such as joint pain, nausea, and fatigue.

I accept and even welcome all of this because it means I get to live out a longer life with the people I love. And I try to stay positive about it even though it will mean a pretty drastic change in my lifestyle for awhile.

But, hey, it's ok. At least I got a free boob job out of it, right?

While the Breast Cancer Awareness campaign that has been waged since the early 1990s has made great steps in making breast cancer less taboo to discuss, it hasn't really done much to really inform and educate about what breast cancer really does to the lives it touches. Instead, out of the pink ribbon campaign there seems to have been born some kind of misperception that breast cancer "isn't so bad" because, hey, "at least you get a new, better set of boobs out of it".

There are so many things wrong with this statement I don't even know where to begin.

Most of the many people that have said this to me are coming at it from a good place. They're being funny or ironic or just awkward. So I don't hold it against anyone. I take well-intentioned love in any form.

I have to admit, though, that each of these statements stab straight into my heart and stay with me. It makes me feel like all the mental and physical pain and suffering I've been battling through is being discounted and compared to a superficial, elective procedure that some women do for fun.

I never really know what to say, either. I usually end up just mumbling, "It's not quite that simple."

The accounts of stars battling breast cancer or undergoing prophylactic procedures because they have the BRCA1 and BRCA 2 gene mutations don't really help either. After all, Angelina looks great, right? She bounced right back!

And don't get me wrong - there are many breast cancer survivors that are happy with their implants. They serve the important function of letting these women maintain their self-esteem and self-image and allow they to go on living a outwardly normal life.

Here's the catch: They're not yours. They're forced on you. You lose all sensation. They are a constant reminder of what you've gone through.

For me personally, I liked my boobs. I would never thought of making them "better". They were exactly how I liked them. And, even more, I would never have thought of only have ONE be made "better". How stupid is that? No one would ever do that.

Additionally, I have never wanted to have non-natural pouches of saline or silicone stuffed into my body. After enduring chemotherapy in which toxins of all kinds were dripped continuously into me for six months, the last thing I want now is for more non-natural substances inside me. On top of that, I really don't like having no feeling in most of the left side of my chest.

In fact, all I really want is my old body back.

This cancer fight has been the hardest thing I've ever done. Both mentally and physically I have been ripped apart. But I'm hanging in there. I'll make it through. I will live to tell the tale. And I will be stronger because of it.

I will feel better when I feel like my life is coming back under my own control.

I will feel better when I know for sure that there is no more cancer in my body.

I will feel better when people start seeing me for me again, instead of seeing a sick person.

But I will not feel better because I have "new boobs".

For some reason, the diagnosis of breast cancer now comes with the assumption that treatment includes a double mastectomy and implants. More and more women are, in fact, undergoing double mastectomies even for diagnosis in one breast. But this is not the only option.

There are other options besides implants, but unless you do significant research you probably won't hear about them. In fact, the first plastic surgeon I went to didn't tell me about any options other than the one he thought I should have. If I had listened to him, I WOULD have ended up with a double mastectomy and implants.

Luckily, I was told about an option that uses my own body tissue to replace my missing breast tissue. A "TUG" flap takes tissue from my inner thighs in order to rebuild my breast. Ultimately, I will have a natural looking breast with no implant. It will match, for the most part, my existing breast.

The pink ribbon campaign doesn't share any of this.  And while it does raise awareness for breast cancer and breast cancer patients, it minimizes the reality of the struggle of the disease.

I think the real problem with this campaign is that although the goal was to de-sexualize breasts so that awareness and detection would increase, it has replaced one problem with another.

Now we "save the ta-tas" or "save second base".

And while it's important that women who deal with breast cancer are able to maintain a positive self-image and be provided with opportunities to look as normal as they like after treatment, what they end up with should not be the "prize" for making it through.

So, again, I welcome any love that is sent my way. Thank you for trying to cheer me up. But maybe instead try - "Hey, at least you get to try out some new hairdos!" :)

The Caterpillar and the Butterfly

So the chemo is over. I guess I'm pretty happy that I'm not getting poison pumped into me on a weekly basis anymore. And I'm REALLY happy that the chemo did it's job. But, I've come to realize that even though I'm not getting the weekly drip anymore, it's going to be awhile before I'm feeling back to normal.

So now I'm dealing with the repercussions of 6 months of chemo and trying to be positive about it. I've got three fingernails that are in the process of coming off, my eyelashes are all but gone, and my eyebrows aren't much better. I've got a head full of fuzz (at least it's growing back, I guess) and I'm dealing with about 10 pounds of chemo weight that is driving me absolutely crazy. I know it's all temporary. Everyone tells me it's not a big deal. I guess I'm not supposed to care about what I look like.

It's pretty hard, though, to go out of the house every morning feeling like I look......I don't know......like someone else. Like some other poor sick soul. It's REALLY hard to look in the mirror and not recognize myself. I seriously surprise myself almost every time. It is almost the hardest part of this whole ordeal.

I say almost because I think I've figured out the hardest part really is. I'm actually still wrapping my head around it. I even said it in the first paragraph of this first post - "it's going to be awhile before I'm feeling back to normal". The funny thing is, though, I don't think I'm ever going to feel back to normal. At least, not the normal that I have always known.

Up to this point I've kind of been plowing through everything so I could get back to the way I was before. It wasn't until I met with an oncologist that deals with long term hormone therapy that I realized this cancer crap isn't going away anytime soon. I've got another 10 years of treatment and not feeling like myself to get through.

Realizing this made me cry.

The short term stiff upper lip is easy. For the long term, though, keeping that upper lip from quivering gets a little harder. It kind of wears you down. And all you want is just feel normal again....to not have to deal with any of it.....to recognize yourself in the mirror.

But it's not going to happen. And it's something I just have to get into my thick head. Normal is now NOT having cancer. Normal is scars and new body parts. Normal is no cancer-feeding estrogen in my body. Normal is starting over, finding out what my new body can do, and testing its limits.

Normal is going to take me awhile to get to.

But a friend sent me a card this week that helped. It says, "Just when the caterpillar thought the world was over, it became a butterfly...."

Thanks, Meg. I'm looking forward to my butterfly moment.

Next Steps

The end is near! Six months of chemotherapy is about to come to a close. Thank god.

Once I finish my last chemo treatment on Thursday, I start into a whole new phase of cancer craziness. I'll get about a month off in order for my body to recover and get ready for surgery. It will take a few weeks for my body to stop feeling the effects of the chemotherapy (in fact, it will probably take a lot longer), but I'm hoping to be able to get back to feeling somewhat normal by eating normally again, working out, losing a few of the pounds I've put on by sitting around the house, and not having all my internal organs constantly assaulted by poison.

The last six months have been a never-ending roller coaster ride of physical side effects and mental somersaults. I just never know what the day will bring....how I'll feel or what rabbit hole my thoughts will go down.

I do know that I've learned some pretty big lessons from the last six months:

1) People don't care about your hair. They especially don't care if it's purple....or any other color....or absent. The people who judge you by how you look don't have enough other things to think about. Don't waste your time on them. The way that you let your spirit show to other people will always outshine whatever cut or color or outward appearance you have. This was an especially hard lesson for me to convince myself of because I have such a specific image of myself in my head, but I have received much less attention than I thought I would for either having no hair or having purple hair. I have lost 2/3 of my eyelashes and have a few chunks missing from my eyebrows, and I don't think anyone but me has noticed (or at least people are too nice to say anything). Honestly, losing my hair has made me a little more self-conscious, but it's made me smile more. And I get more comments on that than I ever have gotten on my hair.

2) We can't make it through life alone. There is a reason that human beings evolved in clans. We need our clan to support us, help us, and celebrate with us. My clan has sent so much love and inspired me so much to stay positive and strong that I'm not sure what I would have done otherwise. How do people get through this alone? From cards and brownies to hugs and purple hair to fighting words, I am not battling this cancer alone. I have my clan standing with me.

3) The bad stuff fades pretty quickly. The good stuff stays forever. I know chemo sucked. I know I spent weeks at a time on the couch, and I know I never, ever want to go through it again. But, now that it's over, I don't really think about how bad it was. Maybe it's like giving birth in that way. I've never given birth, but it looks excruciating and yet people do it over and over and over. And they don't think about the pain. They just think about the wonderful little thing they got out of it after the pain. I think about the people who helped me get through it, and I think about all the things I've learned about myself during this process. After all I've been through, I'm even more sure now that I can get through whatever is sent my way. That confidence, and not all the discomfort, is what I will take with me from this experience.

With chemo coming to an end, this part of the ride will be over soon. According to Dr. M, it seems like the Taxol has done what it set out to do. Ultrasound imaging shows that the tumor has shrunk significantly. Dr. M thinks that it's probably totally gone with just the outline of where it was still showing up on the ultrasound. Apparently it's hard to tell. So that's good. But the end of chemo means that surgery is up soon.

Ironically, surgery is scheduled for May the 4th. Star Wars Day. Back when I was diagnosed, BFF and I named the tumor Darth Hideous because it came from the Dark Side. How fitting that Darth should be expunged on Star Wars Day. Gotta love the way life works out some times.

Even with the tumor being gone, the need for surgery hasn't really changed much. They still need to cut out all the tissue that was affected by the cancer. Since I am relatively small boobed (a scientific term), and since the tumor originally took up a pretty large amount of my breast tissue (the size of a lime sized kidney bean), cutting out the tissue that was affected by the cancer means that most of my breast tissue will be taken out. So I'm still looking at a full mastectomy on my left side.

Luckily, the tumor was relatively far back from my breast skin, and now that it's gone it should be possible to do what is called a nipple-sparing mastectomy. This means that the incision they make will be along the bottom of my breast. The skin and nipple will be spared leaving the breast looking relatively normal when everything is done. The scars should be relatively imperceptible once they heal. Because all the internal tissue will be removed, there will be no remaining sensation in my breast, though. One big numb boob. But at least it should look ok. Score one for me.

Along with the mastectomy, I'll also be getting a sentinel node dissection. Because I don't think I can say it any clearer, here is what breastcancer.org has to say about sentinel node dissection:

The dictionary defines "sentinel" as a guard, watchdog, or protector. Likewise, the sentinel lymph node is the first node "standing guard" for your breast. In sentinel lymph node dissection, the surgeon looks for the very first lymph node that filters fluid draining away from the area of the breast that contained the breast cancer. If cancer cells are breaking away from the tumor and traveling away from your breast via the lymph system, the sentinel lymph node is more likely than other lymph nodes to contain cancer.The idea behind sentinel node dissection is this: Instead of removing 10 or more lymph nodes and analyzing all of them to look for cancer, remove only the one node that is most likely to have it. If this node is clean, chances are the other nodes have not been affected. In reality, the surgeon usually removes a cluster of two or three nodes — the sentinel node and those closest to it.Strategic removal of just one or a few key underarm nodes can accurately assess overall lymph node status in women who have relatively small breast cancers (smaller than 5 cm) and who have lymph nodes that don't feel abnormal before surgery. Studies have shown that after almost 5 years, women who had just the sentinel node removed were as likely to be alive and free of cancer as women who had more lymph nodes removed.

This is my issue with breast cancer. It makes it necessary to say things like "after almost 5 years, these women are just as likely to be alive". Really? That seems unnecessarily harsh.

Anyway, my sentinel lymph node appears to still be quite large, but as with the tumor, it's pretty hard to tell from an ultrasound. So the surgeon will take 3 lymph nodes to see if there is still cancer there. She'll do this by injecting a dye near the site of the tumor the day before surgery. During the surgery, she will follow the dye to the first couple lymph nodes. She'll take those out and they'll be assessed by the pathologist while I'm on the surgical table. If there is still cancer there, she will go ahead and do a full axillary node dissection which involves taking out anywhere from 5-30 lymph nodes. Discovering the extent to which the cancer has spread through the lymph nodes will say a lot about how bad this whole thing is. There is always a chance, too, that if just a sentinel node dissection is done, I may need to go back in for further surgery if they find cancer upon looking further at the dissected nodes.

Dr. K (the surgeon) actually wanted to do a full axillary node dissection right away as per the standard of care for my stage and size of tumor, but Dr. M (the oncologist) convinced her to try the smaller surgery first. The less lymph nodes get taken out the better, even if there is a chance that it might mean a second surgery later on if we were wrong.

What's the big deal with lymph nodes? Again, I quote the experts:

There are many good reasons why women want to minimize the number of underarm lymph nodes that are removed. Lymph node surgery can lead to uncomfortable temporary side effects, such as lymph backup in the armpit, called seroma. Other side effects can linger, including mild armpit discomfort and numbness in the armpit and the upper arm. Also, women who have only sentinel lymph node biopsy and not axillary node surgery have a much lower risk of lymphedema. Lymphedema is the build-up of lymph fluid in the soft tissues of the body, most often the arm and hand in people who’ve had breast cancer surgery, but also the breast, underarm, chest, trunk, and back. Besides swelling, lymphedema also can cause arm weakness and numbness, as well as shoulder pain. Finally, the more surgery a woman has in the breast/armpit area, the more potential there is for numbness, heightened sensitivity, and discomfort.

So there you go. Lymph node surgery bad. Let's hope the cancer is gone from the lymph node as well as my boob. I do not want to take the chance with elephantitis of the arm.

The surgery will probably be 4-5 hours depending on how many nodes they end up taking out. I'll be in the hospital for one night (hopefully), and then I'll get to come home and recover. The reading I've done suggests that about 4 weeks is the average recovery time, but I'm not really sure about that. I seem to have bounced back faster on most parts of this process so far, so I'm hoping my recovery will be closer to 2 weeks. But we'll see. There are some pretty uncomfortable times with getting range of motion in the arm back and dealing with really disgusting looking surgery drains. Stay tuned for updates on that fun adventure.

To try to allay my fears, I've been watching a lot of YouTube videos about mastectomies. Not the actual surgery part, but the before and after part. I have to admit that I'm pretty scared about the whole surgery thing. Not because I'm scared of having surgery. I've had lots of surgeries, and I trust my surgeons. But I'm scared of having my body altered permanently and having to learn to deal with it. It will ultimately be fine, I know. But I'm not looking forward to it. And having people tell me that I will be fine doesn't make it any better. For some reason, it ends up feeling like people are telling me it's not a big deal. And I know it is a big deal. At least for me. As strong as I know I am, sometimes you don't look forward to the times when you have to be strong. Sometimes you just want to fold your hands up over your head and whimper.

But the videos have helped. The women in them are honest and brave and show it like it is. And they make it not look so bad. Say what you want to about the tendency of our society to overshare, but there is something to be said for watching a women take off her bandages, show you her scars, and tell you that she's feeling fine about it. Even if she's lying. It helps me face the uncertainty to come by being able to see it.

Surgery is by no means the end of things. After surgery and recovery comes radiation. If chemo is the warm-up and surgery is the main event, radiation is the clean up. The radiation will take care of all the little microscopic bits of cancer that are still floating around, and it will take care of the affected lymph node under my breast bone that had cancer in it, too, that can't be reached by surgery. The radiation will be 5 days a week for six weeks down in Fort Collins. So that sucks. The radiation itself is a 15 minute daily session. The drive will be a little over an hour each way. But if that's what it takes to make sure this stuff doesn't come back then I'll do the drive.

Radiation basically gives you a bad sunburn and makes you tired. Not too bad of side effects. But it also pretty much cooks the skin and tissue of wherever it is aimed. For this reason, I won't be able to have breast reconstruction until after the radiation and after my body has healed from the radiation. That means I end up getting what is called delayed-immediate reconstruction.

After they remove the breast tissue, Dr. A (the plastic surgeon) will put in a place holder. It's actually called a tissue expander, but I like to think of it more as a place holder. The tissue expander is a temporary implant that gets placed behind my pectoral muscle and is filled with saline over 6-8 weeks to fill the space formally known as my boob. This tissue expander holds everything is shape while my body is bombarded and cooked by the radiation. They fill it up a little larger than the size you want to eventually have since the cooking makes the skin contract. (You're loving this, I know.) Apparently, having the place holder in is not very comfortable. I will not be giving out hugs during this time.

Six months after radiation is done, I'll be able to trade out my place holder for a real boob. But that's a another story that I'll go into at another time.

But for now, that's the story of what's coming up next. It doesn't seem to get any easier, but at least I'm not being poisoned anymore. It's a little easier to see the enemy that's coming at you from the front as opposed to the enemy that's coming from inside.

So here we go.

I guess I need a cocktail. Anybody want to celebrate with me?

Cheers!

Myths and Misconceptions of Having Cancer

It's amazing to me how many people get cancer. It's everywhere. And there are lots of stories about people getting cancer. But what I have realized over the last five months is that most people know very little about what cancer is, how it is treated, or how to respond to it. Any why should they? But there are lots of myths and misconceptions that are perpetuated by the media's treatment of cancer...and especially breast cancer. If you want the basics on what causes cancer, this is really nice little cartoon that explains it: http://www.thepharmafist.com/cancer/

But here is my take on some of the misconceptions based on my experiences:

• There is a "right thing" to say to someone with cancer.
• I personally like, "Wow. That sucks." Those words pretty much sum it up. I have also noticed that people who say, "I have no idea what I should say," end up coming up with some of the most heartfelt, moving, empathetic things to say in the end. There is no right thing to say. There are a few really bad things to say that you should try to steer clear of. But just say it with love. Even if it doesn't come out right, the intention will be there. That's what counts.
• There is a reason I got cancer.
• There are many things that can increase your risk of cancer, but it is almost impossible to pinpoint the actual reason I ended up with a 5 cm tumor in my breast. I do not have the BRCA1 or BRCA 2 gene mutation. I do not have breast cancer in my family. I am not obese. I did take birth control. I do drink alcohol. I don't have kids. Many people have these same risk factors and do not get cancer. I do not know why I got cancer. I just did. 
• I do not like being told that everything happens for a reason. Please do not tell me this. I am fully aware that I can pull positive things out of the experience and use it to make myself a stronger person, blah, blah, blah. But I'm also pretty sure I could have reaped those benefits in other ways, too. Perhaps a really hard year at my job might have done it? Maybe a back injury? Oh, wait. I did that. I did not need cancer to help me grow as a person. This did not happen for a reason. It just happened. 
• Going through chemotherapy means that you always feel awful.
• This is a hard one. I usually don't feel great, but I don't always feel bad. I feel like everyone expects me to feel awful all the time. I don't. Granted, I swing between feeling fine and feeling crappy pretty quickly and sometimes several times a day, but sometimes I feel just fine. Sometimes I just feel really tired in the evenings. It often depends on the day of the week and what treatment I am currently undergoing. Right now, for instance, my fingernails are taking the brunt of the treatment. They're brown and bruised. I can't do simple things like pulling up my jeans or opening a can of soda. After I walk on the treadmill, they throb. But other than that, I feel ok. With treatments on Thursdays, I sometimes feel tired. Fridays are my best day due to the steroids I'm getting. Sundays the steroids wear off so I usually feel pretty achy and rundown. Mondays I get the hellish neupogen shots so I feel like I'm coming down with the flu and I get full body aches. Tuesdays I get better except for random waves of achiness. Wednesdays are pretty good. I do feel, though, like people don't want me to say the that I feel ok. On Fridays I've started trying to run again, and people look at me like I'm crazy. "Oh...I wouldn't think you'd be able to do that!" Yes. I can. Last Friday I ran 3 miles at my marathon pace and it felt so good and empowering that I wanted to cry. And then I passed out in my bed by 8:30pm, and woke up with a nose bleed. It all evens out. When I was on my A/C chemo, I did feel awful for a whole week at a time. And then I felt pretty good for a week. Different treatments do different things.
• Finishing chemo means you're done with cancer.
• As I near the end of my chemo treatments, I'm starting to get this one a lot. And it's different for every cancer patient depending on their type, stage, treatment, etc. For me, finishing chemo is a good thing in some ways. My hair will start growing back. Thank the lords! I'll stop feeling general crappy. However, it does mean that I am now moving into the stage of treatment where they are going to cut off body parts. This, in some ways, is harder than chemo because it makes it really real. My body will now show the signs of treatment every day for the rest of my life. Also, chemo is just the first stage of my treatment. Many people do it last, but for me the intent of the chemo was to shrink my tumor, which it did. I now have to go through mastectomy surgery, radiation, and then reconstruction, and the process will not be over until sometime late in 2017. Yup, another whole year of dealing with this. Oh yeah, then there is the 10 years of Tamoxifen pills that I will take to block my estrogen production to try to keep my estrogen positive cancer from coming back. So yes, I'm glad that the chemo is finishing up, but by no means am I almost done.
• Chemotherapy is the hardest part of cancer.
• I am only part way through my cancer treatment, but I'm pretty confident that this is not true. In my opinion, the hardest part of having cancer is the fact that I think about it ALL THE TIME. Every thought process involves or is interrupted by the thought that I have cancer. It's there when I'm working, exercising, and going out with friends. It is very isolating. I guess there are support groups, but I haven't gone to any of them. There are no young people support groups that are convenient for me to get to. I remember reading when I was training for my marathon that even though all I thought about was training for my marathon, no one wanted to hear about my marathon training all the time. The same is true with cancer. I think about it all the time, but I can't talk about it all the time. It is my new normal. It is a distraction when I'm trying to work or talk or think. If life is a dogwalk, cancer is my squirrel. For me, that is the hardest part of having cancer.
• Once you're done with treatments, everything will go back to normal.
• Between the mental trauma, the constant fear that the cancer will come back, the long lasting side effects of chemo, surgery, and radiation, the scars, the numbness and lack of feeling in a newly dissected breast and/or armpit, and the constant reminder that you went through this, I seriously doubt that anyone that goes through this ever feels normal again. They may get used to it. Or they may find a new normal. But things will never just go back to the way they were.
• This brings up another thing that people say to me that make me wonder. Sometimes they say "Oh! You have breast cancer? My grandmother/mother/sister/friend DIED of breast cancer!" Do not say this. Ever. Just don't. I don't need to hear it.
• I have also heard, "My grandmother/mother/sister/friend had breast cancer and now she's doing great!" While this may in fact be true, this does not really help me. It just makes me feel like there is something kinda wrong with me because I do not feel like I will be fine again ever. And while this other person may be fine on the outside and putting on a good show, she is probably not fine all the time on the inside. The mental side of cancer, the body image side of cancer, the personal relationship side of cancer are the sides that I don't think cancer survivors talk about.  There is a lot of pressure to "handle this well"....to "be positive"....to put on a good show. Underneath may be a whole other ball of wax. 
• I do/don't want to talk about it.
• It depends. At the beginning, I couldn't talk about it without crying so I did not want to talk about it. Now, I'm having to make lots of decisions and learn lots of new medical knowledge, so it's nice to get it off my chest. Cancer also makes me feel very isolated, so it can be really nice to share so I don't feel so alone. It depends on the day, too. Just ask....but only if you really want to hear the answer.
• If I want help, I'll ask for it.  
• Nope. Won't happen. I do not like putting other people out and do not like asking them to do things or go out of their way for me. Lots of people say, "Just let me know if there's anything I can do for you." Nope. Again, probably won't happen. I'll do it myself. Unless you make the decision, give me concrete options, or force your help on me. Then I will concede because it actually might be convenient, entertaining, or take my mind off things. But I will not decide for you how you can help me. I'm making way too many other decisions right now...and just trying to make it through the day. In fact, at this point, I feel like I never want to make another decision ever again for the rest of my life. I will accept your help and your company, but I will not ask for it. That's just how I am. It does mean a lot that you offer. Believe me. I have been overwhelmed by the amount of help I have had offered to me. But unless it's something really important, don't expect me to take you up on it. That would require me expending energy....entertaining you or being a hostess or being a gracious gift accepter. I don't have the extra mental energy to do that. I'll probably just lay on the couch and eat tortilla chips by myself and watch long binge sessions of NCIS. 
• Being positive makes everything easier. 
• It is easier to be positive in public. No one wants to ask, "How are you doing?" and hear a long laundry list of ailments. I often have people say, "Wow! You're handling this so well!" To which I often reply, "I don't really have a choice." Right? You either move forward or you stop moving. I'm not really ready to stop moving quite yet. Don't get me wrong. I am generally a positive person. Smiling and being positive actually do make me feel better. But on a daily basis, I am also a sad person, a frustrated person, and an angry person. Sometimes, I'm even a pretty depressed person. It just doesn't do me any good to show people those sides. It just makes them uncomfortable. I am pretty good at reading people, and the last thing I want to do is make them uncomfortable. But it's hard for me to believe that a cancer patient could be positive all the time. It's just really hard. Right now, my life span is being predicted in 5 year increments, I have no hair, and I can't undo my pants without discomfort. However, I have wonderful friends, people love me, and I'm probably not going to die anytime soon, so I find positivity in that. Again, balance is key.
• All cancer is treated the same.
• Again, nope. I've read literally hundreds of accounts of women with breast cancer. I've yet to find a case just like mine. Every case is different. Treatment is different. Reconstruction options are different. Response is different. Personal preferences are different. Choices are different. Mostly because people are different. And there are so many different kinds of cancer out there that when you combine that with the diversity of people, you get lots of different cancer cases. 
• Getting a mastectomy and breast reconstruction is similar to getting a boob job.
• When you get a manicure, do they chop off your fingertips, throw the flesh away, and then stick your new nails onto little blocks of putty that they stick back onto the ends of your fingers? No? Then, no, getting a mastectomy is not like getting a boob job. 
• When you get a mastectomy they are actually cutting a piece of your body off. It is not good. There is no silver lining (except for the getting rid of the cancer part of things). There are amazing ways that they can go about reconstructing the breast, but there are a whole host of things that change during this process. You usually end up with scars, skin grafts, weakness in the area of tissue donation, and lack of sensation in your new breast. If you choose to get implants, they are not placed behind the existing breast tissue as they are in a boob job. They ARE the boob. They look and feel very different. They may rupture. Or, if they don't, they end up looking a little unnatural, especially as you age. If you choose to augment your breast size during the reconstruction process, your chances of complications go up, too.
• You have to ask yourself if you want one or two done. Do you just reconstruct one and live with your breasts looking and aging differently? Or do you have both of them done so they match but you lose feeling in both breasts? Fun decisions.
• If you're like me, you have lymph nodes that have to be removed at the time of mastectomy, too. This may be simple, or, if the cancer has spread, it may involve taking a whole lot of lymph nodes out that affect your lymphatic system in your arm. This can cause lymphedema, or swelling of the arm. Another fun thing to deal with.
• So again, to sum up, getting a mastectomy and breast reconstruction is not like getting a boob job.

So that's what I got. If any of you have said any of the things I mentioned up above, please don't worry. As I mentioned, anything said with love gets a full pardon. i take love in any way, shape, or form. But these are just some of the things that have been going through my head. And maybe they clear up some of the ideas that are floating around out there.

Cocktail anyone? I haven't been having much, but you definitely should. Hoping my taste buds get back to normal soon so I can enjoy a nice riesling again. Have one for me, ok? Cheers!

The Home Stretch

I haven't been writing much lately. Mostly because I just feel like I'm complaining.....and nobody needs to hear that. But I've received a number of questions about how I'm doing lately, so I guess it's not really complaining if I'm just answering a question. So here goes...

Taxol is much better than Adriamycin/Cytoxin. Much. I have 6 more treatments to go and am on track to have March 31 be my last dose. Thank god. I'm mostly just tired of not feeling like myself. It's really hard to concentrate on anything for too long. And forget trying to multitask. I'm tired all the time. I get winded if I walk too fast, and I'm usually in bed before 9 every night - dead to the world. I don't have the nausea and headache that accompanied the AC, but the metal taste is still there most times and I get bouts of stomach cramps for no apparent reason. No one knows why. Apparently this is not a common side effect. But nothing makes it better except not eating - not my favorite alternative.

The weekly Taxol treatments are apparently doing a number on my blood count. Three weeks ago I almost had to skip a treatment because my white blood count was too low. The solution for this conundrum is to make me get Neupogen shots every Monday and Tuesday to boost white blood cell production. This lovely drug - a cousin to the horrible Neulasta that used to auto-inject itself into my arm - is not as bad as the Neulasta, but still makes me feel pretty lousy. Luckily, I don't have to go all the way down to Fort Collins to get it. I just hop into the Estes Park Medical Center and they shoot me up. A great way to start the day. It ends up feeling similar to the Neulasta - body aches, deferred bone pain - but just not as bad. Essentially, I come down with the flu minus the stuffy nose for two days. Because it affects me so much, though, this week we're trying one shot to see if that's enough to keep my blood count up. Hopefully one will be enough. If not, it's back to two a week.

The constant nose blowing has turned into a pretty tortuous dry nose that ends up bleeding randomly at least once a day. It usually bleeds in the morning when I get up - just starts bleeding - from both nostrils. On Saturday I had 6 - count them  - 6 bloody noses throughout the day. Stellar.

The other little side effect that's starting to catch up with me is nail pain. My fingernails hurt. Especially when I try to do anything with them like open a banana. Very strange. Maybe it's because the chemo is killing off the cells that rapidly grow to create your fingernails? Not sure. That's my best guess.

My eyebrows and eyelashes are still hanging in there, but they're starting to fall out slowly. I've got a big gap in my lower right lashes that I've been camouflaging. Not sure how much more I can do about that. I may have to break into the false eyelashes eventually.

And finally, adding insult to injury, the weight gain is finally catching up with me. The decadron (steriods) they give me before each week's treatment is known to pack on the pounds. I'm sure the lack of activity doesn't help either. I try to walk 3 miles on the treadmill as much as I can, but it ends up only being a few times a week. So in addition to having no hair, having gaps in my eyelashes, and constantly having wads of tissue hanging out of my nose, I've also moved up to the next size in my uniform pants. Ouch. Husband is getting tired of me slamming myself for looking so very unattractive, and he tells me that all of these side effects are temporary. It's true. I know. But it doesn't help much. It doesn't matter that nobody else expects me to look attractive when I have cancer. I don't like looking like a cancer patient. I don't like not looking or feeling like myself. So I just try to ignore it as much as I can.

The good news is that in addition to all these lovely little side effects, the Taxol actually seems to be working. At my last exam, Dr. M was really happy that she wasn't able to measure the lump externally anymore. It has apparently changed shape - flattened out. I can still feel it, but it's definitely not as prominent as it once was. This is great news. With 6 more weeks to go, I'm hoping that things will squash down even a bit more. I admit that I do some manual squashing of my own, but I'm doubtful that this is actually effective.

So now that the end of chemo is within reach, it's time to start thinking about next steps.....surgery and radiation.

Dr. M says the tumor has moved back far enough that it seems like I can save enough of my breast to have what is called a "breast/nipple sparing" mastectomy. I know you all wanted to know that. But it's actually a really good thing because it will end up saving me from looking like the Frankenstein Barbie doll if it is, in fact, true.

The frustrating thing about preparing for surgery is that three separate doctors are involved (oncologist, surgeon, and plastic surgeon) and they don't hang out together. You have to see them all separately. The oncologist handles the cancer, the surgeon handles the mastectomy, and the plastic surgeon puts everything back together. So when I come up with my questions, they usually end up not being able to all be answered at the same time. Or they play the "ask your mother/ask your father" game. To make matters worse, right now I'm floating between two different surgeons and two different plastic surgeons depending on which procedure I go with. Nothing is easy.

So really the next steps are to decide on how many of my breasts I would like to keep and in what way I would like to reconstruct the one(s) that I lose.

I checked in with my plastic surgeon last week about my options. This is the same guy who endeared himself to me a couple of months ago when this whole process started out. I thought maybe it had just been a bad appointment because I had just started chemo at the time. Nope. He's as asshole. Don't like him at all. So this, in addition to the option of having a type of reconstruction that doesn't require implants, has inspired me to seek out a different plastic surgeon located in downtown Denver. A new plastic surgeon means a new surgeon, too, since I can't have surgery in one location and plastic surgery in another. So again....I'm waiting to hear back from the new surgeon to see if she'll take me on. Fingers crossed. But more on that in another post.

So that's about how things are going. I'm still working 4 days a week, trying not to look too sick on Mondays and Tuesdays. Trying to get my act together so I'm prepared when I have to take time off for the surgery. I'll be out about 4 weeks for surgery and then I'll be making daily trips down to Fort Collins for radiation. This all makes being present and effective during our busy summer season pretty impossible. Needless to say, I'm rather depressed about it. But I don't have much choice about it either.  I'll do what I can.

I'm also on the home stretch of my Masters Degree in Adult Education and Training that I've been working on for the last year and a half. I started up again about 3 weeks ago. Including the class I'm in now, I've got three classes left to take and I'll hopefully be done sometime around the end of August. All in all the worst timed "enrichment opportunity" I could have taken on. Between the Centennial and the cancer, I've been pretty busy. But at least it takes my mind off things.

So now I'm off to bed. It's almost 8 and the yawning has begun.

I had a cocktail the other day - actually a beer. A wonderful Lugene chocolate stout from the Odell Brewery. I highly recommend them. I barely made it through one bottle, but damn was it good. You should have one, too.

Cheers to you all.

Waiting Room

Having cancer is all about waiting.

Waiting to see the doctor. Waiting to hear about treatment. Waiting to see if it will work. Waiting to see what side effects you'll get. Waiting for tests. Waiting...waiting...waiting.

The last three weeks have been a lot of waiting.

I had my last A/C chemotherapy session on Christmas Eve. It was the worst one and the side effects lasted much longer than all the others, so I'm ecstatic that those are over. My nurse informed me afterwords that Adriamycin is known as the Red Devil (the medicine is red) by lots of patients. She said she doesn't usually tell people that up front, which I can understand. It was better to go into the bad stuff not really knowing what to expect. I fully believe that having a positive attitude going into treatment has helped me feel better about the whole process. If you go in anticipating feeling shitty all the time, it's hard to motivate to do anything.

So on January 7, I started my 12 week regimen of Taxol. Taxol does not have the same side effects as the A/C - no nausea and no Neulasta. Overall, it's much easier to deal with. It does bring my white and red blood cell count down which leads to more fatigue, but I tend to really only feel it in the evenings. After 6 I'm pretty much down for the count. Supposedly I'm more prone to infection, too, but so far I've fared ok through cold and flu season. It also supposedly does and number on your finger and toe nails, so I'm expecting to lose a few toe nails during the process. My poor toes are still recovering from the marathon in October, though, so I'm kind of used to them falling out already.

The surprise side effect has been the stomach cramps. Some people get them, but not many. It doens't make me nauseous, and doesn't seem to be affected by anything I eat. I just have stomach cramps most of the time. Awesome. But I guess it could be worse.

Taxol also causes hair loss, so I'm stuck with being bald for few more months. It really is the worst part of the whole thing. If I still had hair I'd at least be able to fake that things are still normal, but it's a constant reminder when I look in the mirror that I'm sick. And I just don't think I look good bald. But it's given me a whole new perspective on how guys feel when they start losing their hair.

The hair loss so far has been pretty weird. The chemotherapy kills off cells that multiply rapidly, so that's why the hair on my head has fallen out. Apparently, though, hair in other places doesn't multiply or grow quite so quickly. I still have air hair, eyebrows, and hair on my toes. And I still have to shave my legs - granted, not quite as often as before, but I still have to do it. I even have a pretty good, spaced-out fuzz on my head. Not enough to even suggest that I have hair, but enough for me to wonder why the hell that hair isn't falling out. Weird.

My intensive internet research of chat rooms has suggested that Taxol may be the end of my eyelashes and eyebrows. I'm hoping I beat the odds on those or I'm going to REALLY feel like a freak. But thankfully I have wonderful friends who have loaded me up with all the make up I need to recreate my brows and lashes if need be. And then there's YouTube where you can more than enough videos on how to draw on eyebrows. It's fascinating. Look it up.

And speaking of fantastic friends......I can't even begin to express my thankfulness for all the amazing care packages that have come my way. They light up my day and help me keep going. Thank you, thank you, thank you to everyone who has visited, called, sent well wishes, cards, packages, and meals. It really is overwhelming.

A few weeks ago I posted my current medical challenges on Facebook. It took me a long time to decide whether or not I would do it. I finally broke down, though, and put it out there because I knew there were friends who would want to know. I have to send a huge thank you out to all of those friends, too, who expressed their love and support. I now have a constant stream of email and Facebook well wishers, and I've reconnected with friends I haven't really talked to in years. It's been a great reminder of how real friends never really go away.

So where does the waiting come into all of this?

Well, first I waited for the genetic testing that I sent in around Thanksgiving to come back. This blood test would tell me if I carried the BRCA 1 & 2 mutation that leads to a greater risk of breast and ovarian cancer. This is the gene that Angelina Jolie made so popular when she decided to have a double mastectomy before she even had any signs of breast cancer. If I came back as positive for this gene, it would mean a double mastectomy for me for sure and probably a removal of my ovaries, too, just for good measure. Luckily, the test came back negative. No BRCA 1 or 2 in my family. Which is also great news for my 3 nieces. This now means that my surgery options are more plentiful.

Then there was the waiting for the ultrasound. Between A/C and Taxol, I was sent in for an ultrasound to get a better view of how the chemo is affecting Darth (the tumor). Waiting never seems to be so long as when you're laying on a treatment table in a medical gown waiting to hear if the poison you're voluntarily pumping into your body is doing any good. Long story short, the answer is.....kind of.

I mentioned in an earlier post that when Dr. M palpated Darth he measured smaller. Well, according to the ultrasound, he's probably only about 10% smaller. He's just changed shape. Flattened out a little so he doesn't feel so big. But he's not growing, which is the good part. Darth may, in fact, be hollow inside, or filled with holes like swiss cheese. The chemo may be doing great things, but at this point it's hard to say whether Darth is a shell of a tumor or solid. Either way, he's still pretty big. Which means a probably mastectomy after all. We just have to......you know it......wait and see.

Dr. M put in a referral for me with a plastic surgery group in Denver that does a surgery called DIEP flap reconstruction. Unlike the surgeries I was looking into that involve taking muscle from other parts of the body, the DIEP procedure only takes fat and skin as well as the blood vessels attached to them from the lower abdomen. It does require an incision in my belly, but overall results in no resulting muscle weakness. The results are more natural since no implants are required, and there actually is a chance of retaining or regaining some sensation in the breast.

I wasn't really all that hot on the plastic surgeon I consulted with initially, so I'm happy to have a second opinion. Plus, when my oncologist recommends a procedure and some great doctors, I'm pretty inclined to follow her recommendation. Here's the trick, though. The doctors and the facility do not seem to be on the provider list for my insurance. So what do I have to do? Yup. Wait and see if they decide to cover it.

The cancer roller coaster rears it's ugly head again.

I was also waiting to hear whether or not I had gotten into a clinical trial that might prevent me from having to have a full axillary node dissection - or the removal of 5-30 lymph nodes under my arm. Apparently, since I also have a small lymph node on my breast bone that is affected, I am not eligible for the study. Dr. M thinks there might be a way to just take out a few lymph nodes instead of all of them, but again.........I have to wait to find out.

So I just keep plugging along. I generally feel pretty good, so it's much easier to deal with my physical effects. The mental side of the waiting game is starting to wear on me, though. I should be done with the Taxol at the end of March. And then I'll have to go back in for more tests - MRI, ultrasound, etc. - to see how Darth is behaving. And then hopefully I'll have some answers.

But until then, I wait.

With all the poisons I've been dosing myself with, I've been laying low on the cocktails. I figure my liver could use the break. But I've been having a little Irish Cream in my coffee.

You should definitely have a cocktail for me, though. Cheers!