September 15, 2016 was the day that I learned I had cancer. That day my life forever changed. Since that day I have done a lot of crying, a lot of laughing, and a lot of every other emotion in between.
I’ve learned that time can go really slow yet very fast. I’ve learned that there are good people in this world and for them I’m truly grateful. I’ve learned that some people aren’t worth my time anymore and that’s ok. I’ve learned to go outside my comfort zone and do things I never thought I would do. I’ve learned to be comfortable and uncomfortable with my ever changing body. I’ve learned to share my story and lessen the power that it once held over me. I’ve learned to be present. I’ve learned to be positive and optimistic.
So between the learning, tears, and everything else, the last two years have been quite the ride and I survived. And I’m looking forward to many more years.
I don’t know what I thought the reconstruction process would be like at the beginning of my cancer journey but I can tell you I certainly didn’t imagine it to be the way that it has gone. What I thought would be something that would be done sooner rather than later hasn’t even really begun yet. It will be two years since my diagnosis that reconstruction will hopefully, finally begin.
After my bilateral masetecomy, I had expanders immediately placed. Because radiation was still to follow my expanders were palced under the muscle. I think this made the expanders an extra level of uncomfortable. Then by the end of radiation everything had become even more uncomfortable. Radiation really had a way of shrinking the skin when it wasn’t burning the skin. So by the end of radiation almost three months after the expanders had been placed I noticed that the edges of the expanders where becoming more pronounced. Now the edges where still existent because my radiation oncologist didn’t want them filled prior to radiation and my plastic surgeon wouldn’t fill them until six months after radiation ended in order to make sure that the skin was in good condition. So I pointed out to my plastic surgeion these edges, so she did a slight fill to see if it would soften the expanders. We tried it again the following week to see if another fill would help. Two fills didn’t help soften anything, in fact it may have made the edges more pronounced. So the concern then became that my body was moving the expanders around and my surgeon said we just needed to take them out before they possibly broke through the skin. It was an absolutely terrifying thought so the next week I had an implant exchange. My plastic surgeon said it was still too soon to do any sort of major work, we just needed to get something softer in my body. So we exchanged the expanders for implants about the same size.
It was an unexpected step of the reconstruction process but ultimately one that has proven to be beneficial. Much like the expanders, my body has decided that the implants are something it doesn’t want. Just slightly less uncomfortable than the expanders the implants have come with their share of issues too. Once again, especially on my left side where I had radiation my body has gone about pushing the implants around in an effort to find a position that they’re comfortable with. Almost a year later with the implants and my body is still trying to figure out what to do with these things.
So recently, I’ve taken the first steps to do the diep flap reconstruction. It’s a big surgery and really scary but the benefits are going to be so worth it. Remaining flat just wasn’t something that was going to work for me, if for no other reason than I want my clothes to look good. And we now know that implants arent’ the best because my body doesn’t like foreign objects. So sometime at the end of this year, I will have the diep flap reconstruction surgery. Two years after beginning my cancer journey I will really start the reconstruction process, something that I’m eager to do, I’ve waited much longer than I thought I would have to.
First step is CT scans to check the blood vessels. Thankful I still have my port!
One of the things that no one tells you about cancer is that surgery comes with recovery afterwards. What I mean is that the recovery period after surgery is something you don’t realize will come with limitations on what you can do, even further decreased energy levels, and perhaps most of all, boredom. No where, did any of the cancer information tell me about the boredom that comes with recovery after surgery because there’s only so much HGTV you can watch before it starts to repeat itself.
In my cancer journey the first surgery I had was getting my port placed. With that I was told to not carry things on my left side, not to sleep on my left side, and not to get my incision wet for the following week. All pretty easy but still limiting. The limitations following my mastectomy were by far the most difficult. It’s incrediblily difficult to do anything when you are only allowed to move arms as far as the can go while you hold them against your side. As my plastic surgeon calls it, I could do anything so long as it was with T-Rex hands. The T-Rex hands meant I couldn’t drive, I couldn’t really reach for things, and I couldn’t wash my own hair. It meant that everyone had to essentially wait on me hand and foot. With my most recent surgery, I couldn’t drive for a week. It’s only when you can’t drive do you want to go everywhere.
This was especially true this time around when I started feeling pretty good after only a couple days. Always though there are a few days or many weeks after surgery that the only thing I am capapble of doing is moving from bed to the couch and then spending most of the day napping. And once I get past the stage of napping like a cat all day, all I can manage to do is meander about so slowly that my Fitbit doesn’t even register the movement.
Couple a lack of energy with restrictions on what you can do and eventually, reach the boredom portion of the recovery period. After awhile you no longer want to watch movies, and tv shows begin to repeat themselves. I’m not kidding by the end of my recovery after my mastectomy it was as if HGTV had no episode I hadn’t watched in the prior weeks. So what I’ve done with this recovery period is take a cooking class or go for makeovers at the cancer center, both things I normally could never do because of work. But most of the time I’ve spent battling boredom. I’ve read, I’ve cleaned, worked on my blog and spent far too much time on social media.
I feel like it’s stating the obvious that surgery requires recovery, but it’s easy to forget that it does indeed. There will be limitations on what you can do, hopefully the dreaded T-Rex arms aren’t in place. I will get tired and even when I start to feel better somehow, I’m still tired. Then at some point I get bored and longing to go back to work and all of the activities I normally would be doing and I feel like that’s when I know I’ve recovered.
One year ago today, I finished radiation and rang the heck out of that bell. After 33 days, I was ready for it to come to an end. Radiation was tough. I think a lot of it had to do with the fact that I built up a lot of dread in my head. Too it was tough because a lot of what people told me didn’t quite match up to my experience. Everyone, doctors included said it would only take a few minutes each day. Well because it was my left side that was being treated near my heart I got to use a special breathing tube thing that would hold my breath for me in an effort to get my heart out of the field of radiation. Those first couple of weeks, I was usually on the table for about 20 minutes. It was 20 minutes of the therapist telling me, “Take a deep breath…your breath is held…you’re breathing now.” After a few days, I got used to the rhythm of these commands and then they would change it up and a different therapist would be talking to me. And when this happened I would always at least twice try to take a breath and have no such luck, so we had to start that breath hold all over again, seemingly only adding to my time on the table. I guess I just want to put this out there for someone else to maybe read who might experience the breath holds during radiation also because it does take longer than just a few minutes.
Other things I would share with those going through radiation are that it can be hard because it’s lonely in there on the table. Usually, every other step of the way there is someone else there to who can see what cancer treatment is all about. In radiation, the therapists and doctors come in and out and during the actual treatment it’s just you and that can be hard sometimes. I know there where days when I felt like a science experiment that had to remain on the other side of the wall. I wish I could say that I had found some sort of magic cream that kept me from burning but I had no such luck. I turned red and it was painful. It got to the point where if I had needed any more days of treatment the doctor was going to take a break because my skin was so angry. Thankfully, I only had two more days to go so we soldiered through. I feel though that seeing my burned skin meant it worked. I know that’s weird but whatever makes you believe right? I think the most important piece of advice I can give to someone about radiation is to protect and pay attention to the back side of where you are getting radiation. I got all sorts of creams and stuff to help the possible burning but they never told me that some of my back may get some radiation as well. It wasn’t until it was too late that I realized I needed to pay attention to my back and to the area of my neck where they were radiating lymph nodes. I just wish someone had told me about how far those radiation rays could go before I went through it.
The burn on my neck was something I wasn’t prepared for.
Beyond moisturizing more than necessary, I would also tell people the end of radiation might be hard because it’s usually the end of active treatment. I know for me it was difficult because for eight months my life had been all wrapped in cancer treatment and now the hard heavy part of the fighting was over.
The other day I had come home from somewhere and just completely lost my shit. These past few weeks have been filled with appointments and tests and I had had enough and the stress just had to come out of my eyeballs crying tears over something so insignificant at the time I can’t remember what it was. But at the time it had me worked up and I decided I just needed to meditate. I needed to sit and just be with my emotions at that moment. And by being present and putting space between me and my thoughts I found the perspective I needed to calm down and move on with my day.
I felt the need to write about this as a reminder to myself that when times get to be too much I always have the breath that I can return to, that I can meditate for just one minute and realize that thoughts are just thoughts and mean nothing. And this is important because they say managing stress is good for cancer survivors and overall health and for me meditation is the cheapest, easiest form of stress relief there is.
A few weeks ago marked one year since I finished chemo. Six rounds of Taxotere, Carboplatin, Herceptin, and Perjeta every three weeks and I was done. I was trying to think of what I wish I had known before I started and the first thing that came to mind was to start hydrating days in advance of infusion day. Dehydration was a struggle for me, having to go in twice for IV fluids. There where days where I struggled to drink and eating just wasn’t happening. What I later learned is that most breast cancer patients gain weight during chemo, I lost 20 pounds. For the most part what they told me about chemo in “chemo class” was true. It’s effects are definitely cumulative and run the same same course over each round, which was nice in a way because it added a little routine to the chaos of treatment.
What they didn’t tell me was just how horrible things would taste, I quit drinking coffee and anything with caffeine because it tasted like I was chewing on metal. They didn’t tell me either that some side effects may not show up until months after I finished chemo like when my fingernails started to split and pop instead of being lost during chemo like I had read about so many people experiencing. I guess too what they didn’t tell me is just how powerful the chemo is and how it can so quickly impact other parts of your body. Somewhere around the third or fourth round I experienced some heart troubles and learned about ejection fraction, which has to do with how effectively your heart pumps. I also got to add another doctor to my roster after seeing a cardiologist because my heart rate would get so crazy just sitting in a chair.
Thinking back on it now though, I think the thing that I don’t think I could have understood until I experienced it myself was just how powerful chemo is. Yes, I knew I would lose my hair and it would attack fast growing cells but never did I think it would be so fast that I could see how effectively the chemo was working. My tumor was in a position where it was visible without having to feel around for it and after the just the first round of chemo it shrank so much that it was no longer visible. My oncologist looked at and said “holy crap.” In a way, I think it was the first time in my cancer battle where I truly felt I was going to be ok, because I could see just how well the chemo was working. And that my doctors knew what they where doing.
Tests beget tests. That’s what I keep reminding myself. The truth though is besides from being tired of all the testing and scared of the possibility that they might find something, I’m really just angry and frustrated. I know it’s all to be through and for the sake of my future but at what point do I get a break? For almost the last 18 months it’s been one thing after another. Everyone keeps telling me things will calm down but every time I think I might be approaching that point another test begets tests. I want so badly to put a close to this chapter of my story but the truth is I’m just not there yet. And I can’t compare my story to others. I just have to have hope and faith that the tests all return desirable results.