I know I have used this blog in the past to say things I wasn’t willing to say to people in person. I can’t do anything if you see yourself in any of this post, all I can say is that I am done with all of that and if you haven’t heard from me directly, this is no substitute, this is just the current state of affairs. This blog and this post is my truth and it is dedicated to anyone out there in despair or desperation, who isn’t understood, who is drowning in pain and confusion and has given up hope.
You are looking at 2 spine fusions. It is now a year (June 1st) since the fusion revision – from the picture on the left to the picture on the right. Going back to my childhood, I have a large sample size of Bad Years to pull from and I can say, with zero doubts that June 2015 – June 2016 was one of the Worst Years. Worse than a double mastectomy, worse than chemo. So bad on so many levels it is in some ways, hard to quantify. People understand cancer (or think they do) but almost no one understands being fused into your pelvis. Very few people understand the nuances of scoliosis, that your spine can curve and rotate and cause such intense physical pain you pray you won’t wake up the following morning. The combination between the remnants of breast cancer (fatigue, no ovaries/estrogen, heavy implants and hair that never grew back in the same) and the physical limitations of a t10 -s1 fusion is no small thing to get used to.
Around April/May, I went on a trip to say goodbye to a dear family friend who was going into hospice. It was a somewhat stressful trip because I was going to go alone and meet my sibling but it turned into a family trip. My father is still very much in the middle of his legal issues and it has taken a huge toll on our family which isn’t quite functional to begin with. I returned from the trip with a nasty stomach virus and 2 weeks later I was unable to move my left leg other than my gluteal muscle and the ligament behind the knee.
For whatever reason, it has been next to impossible to get anyone, even Doctors to see this as a problem. If this were my right leg, I would be unable to drive. As it is, my movements which were already limited and full of pain have become exponentially more so……and it seemed the worse I felt, the less people cared. The first thing everyone and, I mean everyone from my husband to a surgeon have said is “you can’t tell”.
Only someone who has gone through trauma or pain that ‘doesn’t show’ can understand how awful it is to hear this, and even more awful to feel like you have to respond with a ‘thank you’. It is these and many other pressures I felt I had to maintain that led to me hitting absolute rock bottom.
I DON’T CARE WHAT IT LOOKS LIKE, I CARE THAT MY LEG DOESN’T MOVE NORMALLY
There comes a point in everyone who is going through hard times if they last long enough – you hit a wall and it doesn’t matter what you think you want or what expectations others have of you, you are done. Everything is overwhelming and involves over explaining except when you try to explain you see the eyes glaze over – in my case it’s like “oh my god, she has ANOTHER problem?”
Well trust me, it sucks even worse on this end. I became completely isolated, depressed and bitter. My family expected that this last surgery would be ‘the end’…. For me now, there is no ‘end’. I am permanently disabled. I don’t know where it came from because I was told about some of these limitations but there has been another expectation that “THINGS WERE GOING TO GO BACK TO NORMAL”
I spent a year pretending to be ok, and that is my fault and I take responsibility for it, but I can’t pretend anymore to spare someone’s feelings or live up to someone else’s expectations. Don’t you people think I wanted to be ‘done’? Wanted to be healthy and without pain?
I was so out of touch with my feelings, there really isn’t anything I did right….I say this not from a self pity perspective, but from the vantage point of hindsight and performing a logic equation of: how I felt + action taken to remedy said feeling = disastrous result that was the complete opposite of what I thought I wanted.
I have been in complete denial of how serious the problem in my spine is – in addition to tremendous pain, they now think that 2 of the levels (l4 -l5 which were the vertebrae that were in the worst shape, the l4 had slid over on top and to the side of l5 prior to this last surgery) have not healed which could mean a number of things, from another surgery, broken rods/hardware and I was warned to be extremely careful because if I fall, it is likely that I will break my hip.
I can’t eat regular food – ever since I had chemo, I am nauseous at the slightest variation in food. For the past 2 weeks, I have been living on popsicles and fruit. Whenever I have tried something else, I get sick.
I can’t bend or lift my left leg. I am completely sexually dysfunctional and am also physically limited by the structure of my spine when it comes to sex – there is a limit to how long I can lay on my back, particularly with heavy weight on top of it…..I am so limited in my movement’s there isn’t really room for a lot of creativity but between the menopause, the nerves that were cut out during the mastectomy – I can’t tell you how awful it feels to have giant implants squeezed, it highlights the loss of how wonderful it felt when I had breasts. I can’t be the only one – someone out there tell me I’m not the only one.
Why are these things not spoken about? I have very little pride left, I will talk about it – I wish there was something already there, but every where I turn I see bullshit, I hear bullshit – it’s ridiculous.
I had been moving along, 2 steps forward, one back but then the bottom fell out. I have had to commit to getting better no matter what it takes and no matter who is left standing in the end. I have left too much unsaid for too long, have tried too hard to live up to expectations of those who don’t even understand an iota of what this life is now like…… I have no idea where this is going, who I’m going to be when I get there or what I will be doing but circumstance and life have dictated that nothing is the same and nothing will be the same.
Everything that I held dear, gave me comfort or made me feel good is gone. In its place is a life of discomfort, pain, loneliness and isolation. I can’t change the first part, but the 2nd is going to have to go.
I invite anyone else who has chronic pain, who feels like no one understands to join me….. I understand, I get it – you are welcome here.
8 thoughts on “A year of living somnolently – Or, who are you when everything is stripped away?”
Oy. Lady Bananas you’ve really been thru it. I know chronic pain is different than chronic debilitating pain. They say the worst pain masks or reduces the other pains…and if something is “cured” another pain will become evident. I’ve seen this myself when ive had two injuries going on at he same time but not sure how that plays into what you’re going thru-? The other annoying issue I can say I have personal experience with is my tibia tendonitis in both ankles. I had PT on both sides plus lost weight but my brain still sends pain signals to some of the area much like the phantom pain in my breast area. That I find quite daunting. Your nerves have undergone hell. It’s no wonder the impulses are thrumming. They are probably jumbled too. I really wish acupuncture needles would work gor you. I can’t recall-?? God bless.
Thank you for the kind words, Jojo. No, acupuncture does not work – I have not had much luck with “alternative” therapies because my issue is specific and structural. I understand what you are saying about pain and its masking effects but I have started to wonder if there are many categories of ‘chronic pain’. I think the pain that comes from muscular / tendon issues or as a result of an autoimmune disease often takes on a life of its own and seems to travel, which sounds pretty horrifying. In my case, even though I have all that metal, my pain has been the same, in the same area for 8 straight years. My L4-L5 area has the most damage and that is also the area that they don’t think healed. It stays in that area except for really bad days when it goes down into my feet. I don’t know why these surgeries have not fixed the problem, other than thinking that some of the nerves are dead (hence not being able to use my left leg 100%) and the rest in that area are so aggravated. Once the surgical recovery was over, I had no pain at all above L4 (I didn’t prior to surgery, they had to go up so far to correct the 1st fusion). I consider myself fortunate in that other than some random aches under my arm, I do not have any phantom pain in my breast area or anywhere else, it is all concentrated in my lower spine. I am sorry you have pain in more than one area in your body, I can’t imagine how bad that feels, one area is bad enough. I have some upcoming tests (more detailed xrays and mri) that are supposed help determine just what is going on – but once there is metal in there, it causes shadows and the images are difficult to interpret. God bless and hugs to you ❤
Planet Bananas – I have read your archived June post at least 3-4 times and wanted to get my head wrapped around all you’ve been thru before responding. I hope this is the right place to reply since blogging on your bc recon pics site was my first time to blog.
I am so sorry you are going thru so many overwhelming physical & emotional issues. I pray that you have had the spinal tests and have seen a neuro md re what is going on and what can be done to provide relief from pain and the ability to regain mobility in your left leg.
You are not the only one who has hit a brick wall and become completely overwhelmed while trying to put on a brave face for family, friends, etc. Don’t feel alone in this. You have suffered thru bc and double mastectomy as well as spinal issues requiring major surgery for many years. It sounds like there are other personal stresses as well.
You are a brave and inspiring woman to have posted your mastectomy thru recon pics for others following in your footsteps.. Despite these tremendous difficulties in your own life you took the time to respond to my post re recon questions which shows how selfless and compassionate you are. Had I clicked on the June archives icon, I could not have posed the questions I did which pale in comparison to what you have been going thru.
You must take care of yourself physically, emotionally, mentally and spiritually. Your comment about recognizing that you must do everything possible to improve your current condition is exactly correct. Pleasing others by sacrificing your well being isn’t helping you. Only when you take the best care of you then you can be the best in caring for others. I hope you are receiving positive support from family, friends, docs but don’t be afraid to ask for it. This isn’t something you can go thru alone and it isn’t weak to ask for help. I know the (glazed eyes) response. Hopefully you have a few special people in your corner who are there for you 100%,
I have suffered from spinal pain off and on for 45 yrs (car accident as a teen). Cervical and lumbar fusions, incl. 2 previous lumbar surgeries(still have 1 lumbar fusion to go), ovarian & breast cancer & a few other chronic issues which cause pain and can make daily life unpleasant at times. I have been in your shoes with the everything is OK, I’m fine, you look great, etc. cause who really wants to hear we’re not except those closest to us.
I’m not sure I understand what you meant about having lost your pride. You have so much to be proud of by sharing your frustration, pain, fear, loneliness and for reaching out and telling it like it is. I hope you are feeling better in every way and I hope my post reaches you. Let me know if I’m supposed to reach you elsewhere on your site.
God bless you,
I don’t think I have enough words to express my gratitude for your beautiful, gorgeous and kind words. I read your comment when it was first posted, and rereading it tonight heightened the kindness and compassion. I am VERY sorry that I am responding so late – I keep thinking about posts I want to write and have been extremely distracted with the business of living a more aware, authentic and happier life. Even writing that sounds funny to me – I took my old blog down but in it I spoke a lot about not understanding people who went through breast cancer and now have a more positive outlook, more tolerance etc etc….. While I cannot say I am more tolerant with a straight face, the transformation that is occurring is extremely profound, and I could never have gotten to this place on my own. I am humbled by the magnitude of events that it took to fully shake all the nuts out of my crazy tree.
The more things change, the more people I encounter like you, where we have many things in common. It is a true blessing to find kindred spirits and those who understand the bumps on the road we travel. I will not only reread your comment tonight, I will likely reread it many times over because it so greatly touches me. The reason I wrote about losing my pride is because through everything I have been through (and prior to cancer unfortunately it included a lot of tragedy and heartache) I kept an iron grip on my pride, at times it was all I had. I had never encountered a situation that so thoroughly knocked me to my knees, and when it finally happened, it wasn’t one thing, it was all things meeting up with an exhaustion like I’ve never known.
The beautiful thing about it though, is that by losing everything (spiritually speaking) I gained the essential soul of who I am……I am no stranger to those ‘dark nights of the soul’ but all that came before were merely practice so that when I truly thought I was losing my mind I was able to let go and just ride the wave.
So, thank you, dear kind Nancy. You may have thought that I have forgotten about you, but it is quite the opposite. Your post HAS reached me, I appreciate and value you and the other women who comment regularly more than I could ever say. You are an amazingly compassionate woman to reach out to someone online- it is easy for me to have my pictures up there. I do hope it helps others, I wanted to contribute something but knew I was not capable of anything else at the time. Now, I don’t really know the limits of what I am capable of, but for the first time I am facing the world without my old fears.
Many blessings to you, Jojo, Tanis and everyone else who has found comfort, understanding or anything from this blog. I will be writing an entry soon. Love to you all.
Dear Planet B, I am happy to hear you received my message and it uplifted you. Your response and expression of gratitude moved me beyond words. You say it was easy to post your pics and the least you could do. Do not diminish your contribution because very few women undergoing mastectomy are willing to display pics of the process for those who are to follow. Pictures are worth a thousand words and in my eyes your contribution is brave, generous and extremely significant. Do not apologize for waiting a while to respond to my post. It was wonderful to hear that you are busy with the business of working on living a more aware, authentic and happier life because that’s exactly what you deserve!
It IS a true blessing to find kindred spirits who understand or have experienced similar circumstances in this life. Your blog and the compassion you express to those who come to seek info, advice, support, comfort, etc. says everything about your character, your compassion & generosity of spirit. Your blog has inspired others to share their experiences and pass on info, & support as well. That is a very powerful gift you have given to so many women.
Now you will discover what else you are capable of, health permitting. I see limitless possibilities for creating the life you want to live now that you are facing the world without your old fears. May you be blessed with freedom from pain! Looking forward to another post from you to us all when you are ready. Love right back to ya!
Hi Planet Bananas – It’s been awhile since you’ve posted. so I thought I’d touch base and see how you are doing. I hope these past months have been better for you and your health has significantly improved! I had my exchange surgery on 9/15 & don’t know if I should post here or to the pictures site about my experience. Take care and hope to hear from you when time permits.
I’m SO sorry I missed your comment!!!! I have not abandoned this blog I have just been really busy but do plan on updating things hopefully soon. How are you feeling? Feel free to post here whatever you would like. Hope things turned out well, looking forward to hearing from you.
Hi Planet B – Glad to hear you’ve been busy & look forward to an updated post when you can. Exchange surgery was 9/15 & pretty easy. The anatomicals look good & suit my body frame well. They have a more natural appearance, shape & feel than the previous implants. I went with the largest size & projection Mentor makes & I’m glad I did. .I’m relieved I made the right decision. Started to have rippling on left & right 5 & 7 wks. out. They say that the textured surface can sometimes “stick” to the skin & occasionally causes rippling. I’m not going to worry about it. I’m done with surgery! I plan to get 3D nipple & areola tattoos to finish it off. Wishing you well!