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!