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!