I realize that it’s been awhile since I posted anything and some folks have started to wonder what the heck is going on over here in Cancerland. So I thought I would take some time to update everyone and answer some frequently asked questions of sorts.
Where are you at in your treatments?
In short, almost done! So far I have had five months of chemo (12 rounds of Taxol + an experimental drug every week, then 4 rounds of Adriamycin + Cytoxan every other week), then I had a double mastectomy, then I had the lovely surprise of 3 more months of chemo (4 rounds of Carboplatin + Taxotere every 3 weeks) for a total of 8 months and 20 rounds of chemo, and now I am a third of the way through 33 rounds of radiation. After this all I have left is a surgery to switch out my expanders for permanent implants.
What’s the deal with radiation?
I know right? What is the deal with radiation? Like for starters, what is radiation exactly and how is it different from chemo? A good question! In short, radiation is a super strong x-ray that damages any cells the ray is directed at. So while chemo is systemic chemicals that kill all fast growing cells, radiation is targeted and only damages cells. The idea with radiation is that the healthy cells can repair themselves but cancer cells cannot. In my case radiation is supposed to decrease my risk of recurrence by 15%. Can’t argue with that!
In terms of frequency, radiation happens every gosh darn day Monday through Friday so I am basically a prisoner in DC for 5 days every week (not to be too dramatic about it). The actual process is as follows: Get up ridiculously early, get ready, drive 30-45 minutes to Sibley Hospital, put on a super stylish robe (see photo!), wait around, go back to the radiation machine, lay down on an uncomfortable bed with my arms above my head in little arm stirrups, get properly set up by the nurses (I have to be in the exact same position every day and have three teeny tiny tattoos across my chest so they can line me up perfectly), have a large machine hover over me and make loud noises for about 3 minutes, get dressed, drive home for another 30-45 minutes and get my butt to work. The whole process is about 2 hours long and usually all this happens before 9 or 10 am. Fun!
The short-term side effects include a bad sunburn in the treated area, which is basically a square from below my right breast, up to the middle of my neck and from the middle of my chest, over to my armpit. They are trying to hit all the lymph nodes in the region. Towards the end you are also supposed to get really fatigued because your body is in overdrive trying to heal itself and stop the inflammation radiation is creating. So far my skin is still doing fine and my energy seems normal for a person who has to get up at an ungodly hour and basically work a 10 hour day every day. The long term side effects include a 1% risk that it will cause a new cancer and roughly a 5% risk that I will develop a weird life long pneumonia because the radiation hits a tiny part of my lungs and could cause permanent damage. Here’s hoping the odds are on my side when it comes to long-term side effects.
In order to reduce the damage cause by radiation I use a Calendula cream three times a day, I am trying to continue to work out and eat a mostly anti-inflammation diet (think lots of fruits and veggies!) and I am going to acupuncture at least twice a week. I should be done with radiation on August 27th if all goes well!
What’s happening with your boobs?
(WARNING: Lots of nipple talk ahead so proceed only if you can handle knowing way more about my boobs than you probably want to know.)
This is the question that no one has asked (you’re all so polite) but I feel like people might be curious about, especially those of you who are in my shoes and have to go through this thing too, so I’ll give you the whole scoop. So I had a double mastectomy. That involved removing all of the breast tissue from both breasts as well as 11 lymph nodes from my right armpit (they found cancer in 3 of them which increased my grade from Stage 2A to Stage 2B). I was able to keep both my nipples although I had to fight for the right one. My breast surgeon oncologist said the tumor was too close to the right nipple for me to keep it which resulted in me nearly losing my shit (in my defense she had told me all along I could keep it and dropped this bomb on me the day before my surgery). Once she realized how upset I was she said another option was to test the tissue under the nipple to see if it had cancer and if it did they would have to do a second surgery to remove it. I said I wanted to go that route and luckily the tissue tested negative. Woohoo!
When I had the surgery they put expanders in which are like implants but they have magnetic ports in them which allows them to be slowly filled up or… expanded… get it? This means that the doctor waves a little magnet over my boobs to see where the port is, then they mark it and stick a syringe filled with saline in to fill it up (I am really disappointed in how little I have taken advantage of the fact that I am walking around with magnets in my chest at all times… best.party.trick.ever.). It sounds painful but I have basically lost all feeling in both my breasts (as well as my right armpit and down the back of my right arm) so I can’t feel it when they put the needle in. Small blessings. When they put the expanders in during the surgery they were already half full. Then I had another expansion a few weeks after surgery, a third one a few weeks after my last chemo and I’ll have the last one after radiation. The reason I need expanders is because my new implants have to go completely underneath my pectoral muscles (because skin alone is not enough to hold implants in place) so the expanders are meant to stretch those out. While it doesn’t really hurt that much to have them expanded my chest does feel extremely tight and heavy, like someone is pressing a 2×4 into me with all their might, for several weeks after an expansion. The next step is that I will have another surgery a few months after radiation, when my skin has healed, during which they will exchange the expanders for “permanent” implants. The quotation around “permanent” is because I will have to have them replaced about every 10 years so permanent is a bit of a misnomer.
Overall I am still in a relative amount of pain even though my surgery was 4 months ago now. Sleeping is especially uncomfortable and I still have to take narcotics to get through the night. I went to physical therapy for about 3 months because I had lost a fair bit of range of motion in my right arm as a result of the lymph nodes that were removed from my armpit. I got most of it back but still have to really stretch to reach straight up (doesn’t help that I’m so short which makes reaching up high a regular activity). I am still supposed to be stretching every day and have been trying to reduce some super painful cording around my scars. My acupuncturist is also trying to help me with some of my pain and it seems to be working pretty well.
How’s your hair?
Great question! In short: barely there! The hair situation with this last round of chemo has been a bit of a mystery. With my first 16 rounds of chemo (Taxol and then AC) I slowly lost the hair on my head and then my eyebrows and eyelashes over the course of several months until I didn’t have any hair left at all (except the hair on my arms, which fell out only after I was done with chemo). All of that hair started to grow back in the break I got between AC and Carboplatin which was about two months long. I had eyebrows and eyelashes and a bit of hair on my head and all was well with the world! Then about 2 weeks after my first round of Carboplatin nearly all of my eyelashes and eyebrows fell out in one fell swoop. Only a couple remained and for some reason those guys have hung on until now. The hair on my head never really fell out although it has thinned quite considerably. So what you see now is not new growth but rather what’s left over from before. I keep buzzing it shorter because it looks strange when it gets longer. So now I am waiting for the hair on my head to pick back up and all come back in so I can actually properly grow it out. Here’s a photo of what I look like now sans make-up. On a somewhat related but much grosser note I lost each and every one of my finger and toe nails. It was mildly traumatic but not at all painful. They have all grown back in besides my sad big toe nails which is why you won’t catch me in flip flops this summer.
Aren’t you looking forward to being done with treatments?
Yes! Obviously! Light is officially at the end of the big ol’ cancer tunnel I’ve been stuck in for the last year. I was diagnosed on September 9th, 2013 and will be done with my treatments on August 27, 2014. That’s a long ass year ladies and gentlemen. I am excited to not have to go to a hospital every day, to not have some part of my body being destroyed, or cut apart or poisoned in one way or the other at all times. I’m excited to be able to make my own gosh darn plans that don’t revolve around what my doctors tell me I can and can’t do. I’m thrilled to get my life back.
But excited is not the only thing I feel. In many ways the last year has been like a punch to the gut and I am just now looking up to see who threw it. I have lost so much that its disorienting to go back to a “normal” life. I have been living in Cancerland so long I don’t remember what the rest of the world feels like. Having cancer is now a part of who I am for forever and I have to figure out how to integrate that part of me into the life I once had. I know that something new will emerge and I am excited about it. I am excited to have a whole new group of badass cancer fighting friends to carry with me for the rest of my life. I am also looking forward to being able to support the next group of unfortunate souls who end up in my position. But it’s also just a little overwhelming to figure out how all the pieces are going to fit together, how I go from fighting for my life to just waking up on a Tuesday, drinking some tea and going to work like other people do.
On top of that I also feel terrified. When you are getting treated you are actively doing something about your cancer. You are fighting. You are in a battle and you have a complete arsenal at your disposal. Once I’m done with treatments I’m sort of alone in the battle so to speak. My only job is to survive. Particularly with triple negative breast cancer, the recurrence rates are higher than with hormone positive cancers but after you get past the first 3 years you are in pretty good shape. After 7 years you are basically good to go as far as recurrence. So my job, for the next 2 years is to survive, all by myself, without any help from drugs or x-rays or any kind of medicine. It’s pretty scary. And thinking about going in to get tested every 3 months and waiting for the results of those tests is beyond terrifying. I am on the verge of having my life back, of building up everything I lost. The prospect that I could lose it once again is incredibly scary. And if this thing were to ever come back that would mean it metastasized and would be stage IV which is pretty bad news. So I am faced with the task of hoping that it doesn’t come back, of trying not to beat myself up every time I don’t do the very best thing for my body (like eating birthday cake or drinking a delicious cocktail or skipping a workout), of trying to push this enormous fear aside so I can live my life. The choice between living in fear and just living the absolute crap out of life is pretty simple. I’m going to chose to live as much as humanly possible for as long as I am healthy and alive, which hopefully is for a very, very long time.