It’s okay to not be okay. This phrase seems to be everywhere these days. But what do you do when some people who see you quite often have no idea that you aren’t okay?
Recently, I’ve been struggling mentally. I’ve found myself in a depressive episode where I’ve beat myself up about things, not wanting to go to work, struggling to get out of bed and many other things that I do when rather depressed. However, my coworkers, friends, and some family members have no idea how much I’ve been struggling. A coworker made a comment saying I would never do something that someone who is struggling might do (what it was I can’t’ remember). My first thought was that she has no idea if I would or wouldn’t do that. She has no idea that behind the smile and friendliness is someone who’s suffering from so much self inflicted stress and feelings that I am not okay.
So if it’s okay to not be okay how do I do so when sometimes I feel as if I have to be okay?
Thriving. This word is used a lot to describe life after cancer treatments. Somehow it is supposed to be better or more encompassing instead of survivor. Thriving, thrive, thriver – I hate these words, this concept that life after cancer means your thriving. I don’t know the dictonary definition of this word but for me it generates pressure and resentment.
The first two weeks of May I did a social media cleanse, not looking at Facebook, Twitter, or Instagram for two weeks. What I realized is that social media is kind of stupid. About myself though, I started to reallize more and more that I’m doing ok, but by no means to I think of myself as someone who I thriving post cancer. I know that life is precious and short and I need to be making the most of it. But that’s a lot of pressure. I feel like people sometimes think I should be going out and meeting all the new people I can, or that I should get a dog because it would be good for me and the dog. But right now, I still to afraid to go out there I figure out what it is that makes a thriver.
I’m out here trying to figure out what the hell makes a life and how to get some stability into my life. There’s so much that has happened in this past year alone that feels like there’s pressure to become someone who is thriving but damn it all I can do right now is survive.
I’m okay with being a survivor, because there’s a lot of stuff I’ve had to deal with and continue to deal with that comes with plenty of its own pressure. Thriver, thriving, thrive – those words are too loaded with pressure themselves that I can never use them in my vocabulary.
Lately, I feel very stuck. Yes, some of it is due to my terrifying fear of coronavirus so I still try to stay home as much as possible. But the majority of my feeling stuck stems from life and all that every new day has to offer.
For a few years now I have been looking for a new job but to no avail. Everyday I feel a little more stuck in the job that is making me miserable. So with the help of my therapist we created a mantra that boils down to making progress everyday. But what if at the end of the day I can not find anything that makes me feel as if I have made some sort of progress?
I’m returning to work next Monday after being off for the last eight weeks to recover from my diep flap reconstruction surgery. And for some reason I find myself stressed about going back in a way that I haven’t dealt with before. After my mastectomy, I was more concerned about radiation beginning that I don’t really remember feeling nervous about going back to work. Now I have all sorts of nerves this time.
First, I’m worried about expectations being different now that I’ve had reconstruction. My work has been very understanding about when I have to leave early or come in late, now I’m worried that they are going to think everything is all done and I won’t have appointments anymore. I find that I’m so worried about this, that I feel as if I need to tell my boss that I’m still going to have appointments and possibly follow up surgeries in the reconstruction process.
Second, I’m worried about the expectations I have for myself. I find that I’m worried about not being able to handle my workload and the things that I was doing before surgery. So far I have a hard time standing for an extended period of time which is something that my job requires and I know that my coworkers are eager not do to this part of my job anymore. I’m also just worried about general fatigue being an issue.
Finally, I’m just anxious about all the little things. Will I remember passwords and pin codes? Will they have hired someone new? Well I be able to handle the long commute to and from work?
Bottom line is that I know all of this worry is useless. And that as soon as I settle back into the routine of it all everything will settle and be something that I can do. It might not be like it was before but that’s ok, it’ll be something that works.
Sometimes, I think I should start playing the lottery. It’s really fueled by the feelings that I must have some sort of luck, just not necessarily good luck. I got cancer at 32, not exactly lucky. Another example of my luck, my cancer is hereditary. I saw somewhere that 10% of cancers are genetic, again luck. Finally, my hereditary cancer is from a 1 in a 200,000 genetic mutation called pTen. I mean put these all together and I clearly have some sort of luck, so it could possibly translate into winning the lottery right?
Jokes aside, I feel like my luck as brought me cancer and a rare genetic mutation as way to give purpose to my cancer journey. First, to find some sort of way to give voice to the pTen mutation or Cowden Syndrome as its often referred. Basically, as I understand it, my genes are missing some sort of tumor suppressor. As a result I’m at an increased risk of a number of different conditions including an increased risk of breast cancer, endometrial cancer, thyroid cancer, kidney cancer, colon cancer, and melanoma. As you might imagine, to learn of all these risks after learning of cancer diagnosis is a lot of information to process. What was even more to process was that this was even a possibility, because all my doctors ever talked about was the BRCA mutation, that’s really all I had ever heard talked about when it came to genetics was the BRCA mutation. And as I write this I’m realizing the first way to give purpose is to share my story and advocate for the rare mutations.
The second way I have given my mutation purpose is that I get to tell others what it’s like to go through the screenings for different cancers. After I finished radiation, I started screenings for all the other cancers where I have an increased risk. I could tell my coworker that a colonoscopy isn’t a terrible procedure the hardest part is the preparation the day before. Screening for melanoma, easy peasy you just get down to your undies and the doctor looks over every bit of you, between your toes, through the scalp and it takes no time at all. Mammograms are easy compared to the hell you go through if you don’t monitor things. And that’s usually what I point out to people if I need to, that the screening for the cancer is not that hard at all when compared with fighting cancer. And if they make the screenings a regular thing any potential cancers are probably going to be caught early, which is always better.
Probably the best way to use my luck is to continue to get the screenings for surveillance, to take control of the increased risks. And maybe I’ll buy the occasional lottery ticket.
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.
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.