This is going to sound a bit like a whining session. I thought it might be interesting to put aside all the sunshine and light and “aren’t I handling this like a boss,” and be real about some thoughts and feelings that are definitely part of the process of going through an experience like this. I am trying to inject some humour, as I have committed to humour and grace. But the grace part may be a little hard to find in here. It’s there, don’t worry. But sometimes grace is about being okay with getting real and sharing the bad with the good to help put it in perspective and maybe make some good come out of it.
1.) Wow, time goes by so fast! And I am not good at keeping up with this Blog. I have made a commitment to post regularly. It started out weekly, then I thought two weeks would be adequate. Now I am stretching past three weeks and feeling like I am letting someone
down… crazy how we do this to ourselves. I know there are people who have enjoyed reading what I am posting. Some have even commented how helpful, insightful, or inspirational it is for them. But I know that all of them would care more about me being okay than the next installment being ready on a certain date… It’s also about making sure to document this journey. This is essentially my journal. Something I have never been very good at. Thankfully I can almost document my life through my songs…
It is a self imposed schedule/expectation that I am working to overcome any anxiety about. Plus, doesn’t it create scarcity, anticipation?
2.) I miss my hair! It was an interesting, painful, tedious few days, the second week after the first treatment, actually, like they said it would be. I was emotional when it almost all fell out. First of all, I couldn’t believe how much hair I had. My scalp was painful, irritated, like when you keep your hair in a ponytail too long and finally let it fall in the other direction. Only all the time for 10 days. I was left with not enough hair for me to feel like I could go out in public like that. Even though there are lots of very beautiful and presentable people who look just fine with less amounts of hair. I know some of them. But I shaved it off and now I have none. And I have to keep shaving as it continues to grow, although sparsely. What was I thinking? I am now getting hair tips from my son in law … to whom I have given so many. Whose hair twin I now am. Also a brother of mine. I recognized the head shape immediately!
Everyone else is getting used to it but they see me more than I do…Now to explore the world of head coverings.
It means the treatments are working like they should. And I needed another creative outlet anyway. And apparently I have a lovely shaped skull. So there is that.
3.) My body is disfigured. While I am glad to have the cancerous tumours gone, don’t get me wrong, it is still hard to look at my oddly shaped torso. In or out of clothes it is problematic. First of all, with breasts to hide it, I didn’t know I was so barrel chested. So there is that. Maybe everyone is, we just can’t see it when there is a few inches of shapely fat arranged across our chests to distract our gaze. I also have a huge and very ugly looking scar (sorry my caring surgeon friend to whom I am so grateful for all you have done for me). But my body is not handling the healing as well as hoped, there are parts of me that rub against other parts of me and now there is an infection I am dealing with to further the scarring. I have already talked about the nervy feelings and the numbness.
That is still there. In my chest and my upper arm. My armpit is tender and feels like a dead body when I touch it, because I still can’t feel anything from the inside to tell me that I am being touched. I feel very disconnected from myself at the moment. Yet sadly aware at the same time. It is truly fascinating. Oh yes, and of course I couldn’t have the kind of cancer that makes you lose weight ( not that I recommend losing weight that way or make light of what that means for others ). It’s just that instead of losing weight I am gaining weight. My hormones are messed up, there is fluid retention, and I never feel nauseous enough to not want to eat all the lovely things.
I am alive with a prolonged life expectancy than previously prognosticated, which is more than I had any expectation of just a few short months ago.
4.) Cycloptic Breast Syndrome ( I think I just made up a new term).This follows with the above section, but deserves it’s own, in my opinion. Warning: this may be more info than you want to know. When I look at myself after a shower my torso reminds me of a pirate with an eyepatch.
Yep. As I have already stated, I am truly glad to have the diseased bits one gone. My chances of a longer life increased when my right breast was removed, for sure. I am grateful for that. But I do wish the other one were gone too. I know. Ungrateful of me, as I still have one when so many other women don’t because both of their breasts tried to kill them. And there are many women who miss their breasts when they are gone. And yes, I am avoiding talking too much about the many men who miss their loved ones breasts, but that is a real thing too. I feel disloyal and uncaring to my breasts and my husband, when I say I don’t miss the old gal, and that I want her friend out as well. That I could live my life just fine without them both and be happy with a prosthetic bra for any public venturing. I am resentful of the one that remains. I feel bad for that. She is forgotten, neglected, in the way and inconvenient. I get tired of feeling off balance. I can’t wear a bra due to my scar issues and the fact that without a prosthetic breast it just doesn’t hold down well enough. I have found a spandex camisole that works with safety pins to hitch up my little breast stuffy I was given to start me out. But it only works for so long before it feels uncomfortable. I am resigned to being uncomfortable for the next few months until I can have the other breast removed, too. Which, by the way, also has a cyst in it, so there’s that…
These ladies performed well in their time. They have nourished babies that are doing great things in the world. The largest parts of the cancer are gone and I will never have to worry about them again. There are numerous, creative and ingenious options to live a wonderful life going forward. I am grateful for those who have gone before that have contributed. Breast cancer is a big big business that is providing employment and revenues for so many.
I don’t want to die of something stupid. Staph infection- they warned me it could happen. It happened. My mastectomy incision, due to the aforementioned unfortunate rubbing has developed a staph infection. I am at home in Ponoka where I don’t have a doctor. I go to the emergency room with my special paper when my temperature went up over 38.3 Celsius, get all the blood work done, they look at the redness around my mastectomy scar. Yes you most certainly have an infection in there. The culture comes back with a certain type and grade of cocci bacteria strain. I get prescribed some oral antibiotics by a very nice doctor. I start to take them, three days later I am in the emergency again with heightened symptoms. I am prescribed an intravenous antibiotic which I have to go back to the emergency room for, daily for five days. The emergency room… where sick people go. I am immuno-compromised. This is stressful. I receive an updated test result from the initial culture. It is Staphylococcus Aureus. Apparently the worst one you can get. Of course I have all the fears as it can go to other organs, like my struggling heart, for example, my compromised chest, for example. Into my bloodstream, for example. I go for my fourth antibiotic iv, after a bad night and not really feeling like anything much is changing with this infection, and maybe even getting worse. But I’m trying to be optimistic- I hear it often spikes before the cure kicks in. I tell the doctor about the updated result. She checks it. As the fourth doctor, in a surprisingly busy ER, to see me through this whole process, who would have checked if I hadn’t brought it up? It turns out I have been getting the wrong antibiotic. It was right for the first pass of the culture results, but what they were giving me will not be effective against the bacteria they have declared in my upgraded test. They set me up with a new one which requires me to run around and find a pharmacy that does compounding in order to get a particular med that will allow them to give me the dose once a day instead of three times a day. I cannot imagine how someone who is unable to advocate for themselves can manage in our current medical system. At this point in time I am ready to do three times a day- set me up with a room and keep me there. I don’t want to die of something stupid! They actually were able to find some of the right medication and kindly gave it to me so I didn't have to go three times for the first couple of days while the pharmacy puts the concoction together.
Good thing we have a health connect that gives me up to the minute info and updates on all my health stuff! Too bad the Cancer Clinic is not connected into it so I have to update them personally… The are up to speed now and have made the arrangements so they can check me for viability before the next chemo session. Interestingly, that first night I went in was the only time in this whole process that my temperature was up over 38.3. So glad that I went into the ER and got started on the process and for a great ER team full of compassionate professionals who all care about my wellbeing and are doing the best they can to help. I may have even made a new friend or two. Super important to note: your health care professionals are people, first and foremost, who appreciate being respected, treated kindly, and appreciated.
6.) I still have a cyst in my chest. (The picture is not of my insides. It is just from the internet). I don’t know exactly where mine is, or what it looks like. Another unknown, uncomfortable, untreatable at the moment, thing that I have to emotionally manage. It will be reviewed from the CT scan that occurs once my chemotherapy is finished. The specialist will then determine what will be next steps.
Good news, I have a specialist who has not forgotten about me and is waiting to help me treat it. And, according to a recent chest x ray, it has shrunk a bit- due to the steroids, I am guessing, that are part of the chemo treatments. So that the pain and pressure in my chest are not as pronounced, although still present as a constant companion.
7.) As much as I had plans and am trying to set things up to do so, I have not been able to work on music as much as I believed or hoped I would. I had visions of setting up my recording studio, hammering out accompaniments, doing some vocals and producing some great little tracks I could add to the stuff that is already out there, maybe working on some of the old stuff. So much great new technology enables us to do way more professional sounding music than I was able to do a few years ago. I have a subscription from my son in law to use an amazing online service he has signed up for, too. And another friend who wants to collaborate. While there have been some good days so far, things just haven’t been set up so I could do all the things.
Having a raging infection does not help a person be able to feel up to doing much. As time goes on through the process I know that I will feel less energy and more gross. But I will continue to try. I actually did write a new song this week. It’s the recording part that I need to get things set up for and get going on. I am grateful for the music in my life that comes from such deep places and helps people feel less alone, and gives voice to so many others about things they feel they can’t express.
To tie this all in with mental health recovery and community building? Because I know you are looking for the Segway's...
There is always the back end of things. The real, day to day grind. The grit and the grime behind the scenes. It is not pretty, easy, comfortable, smooth, or even rewarding a lot of the time. But it needs to be lived through, done, endured, learned from, experienced. It is as much and maybe even more important a part of the process of growth and change and moving forward as the gains and victories. It bonds and binds us. But it also refines us, humbles us, and helps us become worthy of the outcomes we are seeking. It’s okay to not be okay sometimes. We just need to keep our sights on the vision of what could be, what really matters, and what we need to do, every day, toward better days to come.
My musical gift to you: Carry Me. Written during a very dark time when I reached out to the source of all light and goodness and found hope.