PMPS

Some improvements in post-cancer care – and with me too…

If you have read my past blog posts you know I have dealt with four surgeries since fall of 2016 to deal with the pain I ended up with after breast cancer treatments.  My last surgery in Feb of this year was a grafting surgery and it has involved a long recovery mixed with many months of PT.

So here I am almost 6 months out and I have been working hard in PT to get this arm moving. I have found an incredible PT team that is well versed in my issues and have been specially trained to deal with them. The program they follow is called ReVital and it is a Rehabilitation program for cancer patients.  It encompasses many forms of rehab- not only PT. Though some cancer centers already have rehabilitation in house some don’t and these participants are highly trained to deal with many issues during cancer treatments and well after.

There are so many facets to cancer- – fighting it being one – recovery being another – and  the during treatment and post cancer issues like pain, depression, fatigue, disability etc being another. For so long this latter facet has poorly addressed. But I am seeing and increase in available resources including rehab and also more written about post cancer pain- this implies that more cancer doctors and  pain management centers are becoming more aware of the issues- and the reality of the problem being acknowledged. In addition the cancer doctors themselves are also learning that their patients need to be fully served when they are facing cancer treatments and they are beginning to understand the potential residual effects that these cancer treatments can impose on patients- sometimes symptoms showing up years after treatments end. So now we see more of these docs being proactive in having the ability to refer a patient for help when they begin to complain about their issues.

This is a big deal for many of us who have had to go to plead their cases to doctors who couldn’t understand why we hurt so badly after our treatments. We weren’t supposed to complain. We were supposed to be happy to be alive. And we are- but we need to be heard and believed when we say we hurt after our cancer treatments are over.

I made a mistake after my treatments ended I should have gone right to PT- I did go when I had an odd and very uncomfortable nerve pain show up basically over night.about three months later. Would my pain issue have not occurred if I had don PT before that nerve pain reared it’s ugly head? I don’t know. But I thought when I had ongoing issues that my docs would have had my back. But after PT the issues persisted  on and on and my cancer surgeon scratched her head and kind of pushed me off into the unknown to try to find someone to help me figure it out. I went to numerous – like a lot- of doctors over the following couple years and I got nowhere.

My world came crashing in midway through 2016 when my pain hit an all-time high and I was bedridden. Many doctor doors closed on me then, too many. I felt more alone then I had ever been. I was at an all-time mental low. Then finally when I yet again went to plead with my cancer surgeon for some help and she treated me literally like I had a mental issue and not a pain issue that was the last time I saw her- and I went home despondent.  I was in a very bad place. And it took prayer and tenacity to keep going and finally I found doctors who wanted to help me. Who weren’t afraid to try.

Nobody should have to go through that!  Before cancer I didn’t have the pain – after I did.  Radiation damage is now recognized and talked about in the cancer community and the fact that it can pop up soon after treatment or years later is being discussed more in-depth.  Chemo causes its own long term effects.  We are warned of some of this before treatments begin. Like deer in headlights we are frozen and see the treatments as the only way to get safely off that awful road.

In my hindsight world I would have not gotten radiation after my lumpectomy. I was early stage. Did I really need it? Maybe I would have gotten recurrence in that breast- maybe not. But the pain I have suffered since my diagnosis – 6 years ago now- has been very very hard. And there have been times I had so many dark thoughts. Looking at it in the rearview  -I think I would avoid radiation and take my higher risk of recurrence (because it exists anyway) to avoid the pain. But that is what I have learned and sadly not what I did.

It may be that we who suffer severe pain from our treatments might never find a life that is actually pain free. But what we do need is the support of our doctors when we find ourselves in this very difficult spot. We need medical professionals who can help try to get us to the best version of feeling better that is possible.

I thank God that in the 6 years since I was diagnosed that we are seeing these improvements in this area. I think the surface is only just being scratched and there is so much potential in this area of patient care that I hope we see more and more improvements in the years to come.

As for me – I have made some good progress since this last surgery.  I have been in PT since mid-April and I still have pain but my arm range of motion (ROM) is vastly improved. We have hit a point in trying to improve my ROM where I am getting more pain flares.  I won’t go into all the medical reasons why but they PTs seem to think this is ok. For me it is easy to get nervous and discouraged. It is so easy for me to want to NOT move my arm – or do my exercises – but I force myself.  One thing I seem to do on a regular basis is to overdo things and get pain flares. Many times I don’t even know what I did to flare – that is frustrating.

But I move forward in fits and starts.  We joined a health club with a pool because I have a rekindled love of the water. I was able to get into the ocean and past the breaks in the surf. I did get pummeled by a wave once – that brought back memories. I have kayaked using the paddle sort of- I suck at it – I am very glad to have peddles at this juncture. I have been in the gym doing light workouts and I have ridden my horse. But I have also had a number of pain flares that side-lined me too. There is no straight path and I really still have no idea where I might wind up and I don’t think my forty PT visits my insurance allots is going to cover what I need. So I hope they will extend me.  That can be a battle too.  I have learned not to expect smooth sailing. But I am ever so pleased when something does go smoothly.

Before cancer I was in great shape.  I was strong. I looked fit. And now… well my version of strong has changed- but I have goals – but they have no end dates- I just keep extending them.  I am trying not to be so vain too. I am hard on myself for gaining weight, for aging…I need to give myself a break. I am trying. Trying should be my middle name. I am always trying- even when I don’t think I can move my feet out of the concrete- somehow I just keep trying. …I don’t know where I will end up but at least I keep trying- and that is not a bad thing.

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This is in early July. I have even more ROM on the right side now. This was an exercise that did flare me up. When I began PT I was at about half this range.

Updates – figuring things out

It has been a good while -yet again- since I have written on my blog. I am trying to find the time and motivation to write again. I guess the good news is that I am busy. Busy doing life. Which for a while I was sidelined from. So busy is really good news for me.

I am about 10 weeks post surgery. I am a few weeks post a great vacation that we took to Wilmington NC and Charleston SC. I am grateful that I was able to take the trip. I got in the truck for the drive down south and a pain flare began. I likely did way too much preparing for this trip. Packing was the the likely culprit that took me from feeling pretty well before we left to being in bad pain on the drive down.

I was pretty bummed out. My recovery from surgery had been promising. I was feeling well. My pain level was down. But what I had noticed was that things were backsliding some. Things in my surgical area felt tight. I had been told to massage my scars and that they would actually get softer in time. My nasty radiated scar is gone so that leaves me with three new scars but they aren’t radiation damaged scars. I wanted to be positive but it has been hard. I am four surgeries in trying to rid me of this post breast cancer therapy pain – so I get defeated sometimes when I feel the pain intensify.

In that truck on the way to Wilmington , NC – I took pain meds- I just had to because this trip was important. I wasn’t going to mess it up. Kevin and I needed to get away.  We are caring for my mother in our home. And she is a wonderful person but Kevin and I hadn’t been away alone much in the last few years – so it was time. And well it was also our 20th Wedding Anniversary. I wanted celebrate that milestone!

I felt a lot of pressure going into this trip. I planned it. I love planning and I was excited to see the areas we chose to visit. I will write more about that trip later but I will say it was a lovely time. But I felt this pressure to not mess it up because of my pain. So in that truck I  was so frustrated with this pain flare. We cut a trip short last fall because of my pain and I was so disappointed. I really wanted to be able to take this trip and not have to cut it short. We were to be away for a week.

I was supposed to begin PT when I got home…another thing I was skeptical of because I hadn’t found any PT that ever helped me. So as we were driving I took out my Ipad and began searching for some type of PT therapy that might be designed for either breaking up scar tissue or for cancer pain in general.

One search led to another and I ended up finding a PT group near my home that performs a type of rehab therapy for cancer patients called ReVital.  I have been going now for a couple weeks. And the therapy group I am seeing near me is really great. I knew from the first visit they knew what they were doing. The therapist asked all the right questions. She knew about radiation damage and issues due to chemo. They work on breaking down scar tissue and are trying to stretch muscles and tendons in my arm that are damaged by radiation and were also made immobile due to frozen shoulder – I also had that after the cancer treatments.

PT is not without pain but the first day the therapist told me straight. If I don’t get this arm moving I am just going to get worse. So here I am going diligently to PT. The fact that horrible scar is gone is allowing me to do more than I would have been able to do if I still had it. So I am ever so thankful to Dr. Del Corral for removing it.

I feel hopeful for the first time in a good while. I know I will probably flare again (and I had a flare the first day of PT and when I left that flare was gone so that really gave me hope). I know there are steps forward and steps back. But I have been fighting for almost three years to get my life back. To feel normal.

Yesterday I drove my mom to her haircut appointment and while she was there I ran to the hardware store and to the grocery. I ran into a friend in the grocery and we chatted for a few minutes. I hurried through my shopping so I could get back to get my mom. It sounds so normal to people reading this I am sure –  but for me it is huge. Just to be able to drive and to have that freedom is so great. And Maybe some of you know this but I have had anxiety for years and shopping alone isn’t easy for me and for a long time I never did it. And now I am doing just that. I am trying so hard to just live life. Normal stuff is good.

So on that trip down south I didn’t know what I was getting into when I booked an appointment for PT. But sitting in the truck I felt like maybe it might be good. Just keep moving forward. That is always in my head. When we got to Wilmington I told myself I was going to enjoy our darn vacation. I was not sitting around! I was going to see stuff. And Kevin – as always- said he would do whatever I needed to do. There was no pressure from him…it was me pushing me.

So the ice pack became my good friend.  I toted it under my arm for much of the trip. Anti- inflam meds were needed daily and a few days into the Charleston leg of our trip I realized I was feeling much better – we had eaten and shopped our way through that city – and we had clocked some walking miles on that trip. It was very good.

All I can say is thank God for ice packs and thank God for the wonderful husband I married 20 years ago in April 1999. I often still cannot imagine my luck.

I am so grateful for being able to do normal things. I am grateful for a PT group that gets my pain situation.

And as my dad would have said- “Keep the nose of the plane up Anne” – I am trying Dad  – I really am.

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Southern Mansion South of Broad Charleston SC

Sometimes things work out…

All I can say is we just never know where we are going to end up. We have no real control over anything. All we can do is make plans and have hope that things will be okay. For  the last two years  the one thing I had wanted so much to do was to ride my horse again. It wasn’t  a lofty goal really but one that seemed to be unattainable to me not long ago. I didn’t want to give up the hope that one day I would ride again…..but for a while it was iffy…

Two years ago I thought I would never be able to do many activities again let alone ride a horse. My only goal then was trying to find someone to fix the pain I was in. That was a battle unto itself but I did not want to give up- because to do so left me in a very dire situation. One that I could not accept.

June 2016 was a start of an intense pain drama that was caused by breast cancer treatments. The pain had been an issue since my surgery in October of 2013. I had sought help for it with no luck and then it really  reared its ugly head in May 2016 leaving me bedridden for much of the next year. It was hell trying to find the a doctor who would listen to me and not send me away with a shake of the head. They either had no idea what was wrong with me or they thought I was nuts. But finally I found a surgeon who listened.

Today, three surgeries later. I am not that woman stuck all day and night in bed anymore- but I still live in chronic pain. But the levels I am managing- and there may be more surgery in my future. I am left with a disabled arm that I cant use fully and overuse causes pain. Sometimes I don’t know what that overuse is. But I just try to dance with it- sometimes I am in the lead and sometimes the pain is.

I have been hell bent on doing more living- I have always been a physically active person and I missed the mental boost such activity gave me. So many things I could not do. Some because of the limits of my arm and some activities were contra-indicated by my surgeon- one being horse back riding. It was a total bummer to hear this but I temporarily shelved that disappointment and sought another activity .  I bought a kayak with pedals so I could go out in the bay near our beach house. The feeling of independence being on the water propelling myself was intense and important in my recovery. I bought a bike. I began to walk more. I can do limited exercises in the gym.  But I was really missing the one activity I was told not to do—ride my horse.

In the summer of 2017 I was still in enough pain that I was not sure I could ride and on enough drugs I was not sure I should ride. But one day that summer  on a whim Kevin and I tacked up my horse Harley . He accepted the saddle and bridle so well  that I decided to get on and have Kevin lead me around the dry lot. I knew the surgeon had not been keen on my riding but I wanted to be in the saddle. It was just a pony ride but it was the kick I needed – I set a firm goal – I would  ride my horse again. But there were still obstacles to overcome.

I didn’t think it would take another year before I was able to ride again. I had another surgery in November of 2017 to hopefully further reduce my pain. I would say the result have been pretty good. I am off opiates but still need nerve pain medications. . I have pain flares more often than I would like. But I am doing more. The surgery itself – which was fat grafting -had a longer than expected recovery time.

Every time I went to see my nerve surgeon – Dr. Williams- I would tell him that I wanted to ride my horse.  HIs concern was that my arm would be yanked forward if the horse pulled the reins forward suddenly- and this does happen. This can cause more damage to my arm. Also there is the risk of falling off but I think in my case the real concern was with the yanking of my arm. So I wanted to rectify that. How to keep that from happening. There had to be a way . Maybe I would ride one armed. I began to look into that as an option.

Then sometime this past spring my farrier came. I was telling her my plan to try ride again. I explained my concerns of riding with two arms and one getting yanked and I was also becoming nervous about not being strong enough to ride using only one arm (my horse is also neck reined) if my horse pulled suddenly. She told me to get a Daisy Rein. I had no idea what they were but it turns out they are used often for young riders. The rein hooks onto the saddle and also to the bridle and that keep the horse from pulling his head down. Maybe it would work for this old rider!

I saw my surgeon again in July and explained how much I wanted to ride and told him about the rein. He never did give me his blessing but he told me if I did ride I needed to send him photos after I was safely off.  So that to me was an ok to go ahead.

My plan was to move slowly into riding my horse Harley beginning in early August- but life threw us a loop as we suddenly  lost Harleys companion a- our beloved Arab mare -Airy to colic. It was a tough loss on all of us and I again shelved trying to ride. This time more for Harley than for me. I knew it was a stressful time for a horse when there are changes like that adding me riding him after such a long time off might add to the stress – and we wanted another companion for Harley so the focus shifted on that. It took some time but we now have Hank and Yukon here. Hank belongs to our neighbor and Yukon is our Guardian horse form a local rescue.

One  day a few weeks ago  I went out to the barn to feed the horses and our neighbor was bringing Hank back from a ride. I began to feel that envy. That yearning to ride my horse. I really felt it was now or never so I began to get Harley tacked up. It is a bit of a chore for me to get it on while trying to limit the use of my arm but I was able to do it with Kevins help.

Before long I told Kevin I wanted another pony ride. I have to use a step to mount now to get on- it allows me to not use my arm too much.  I got up and settled – feet in stirrups and I was holding both reins because we put the daisy rein on to give that a try too. He tolerated it well and best of all it worked! He couldn’t pull very far so no yanking of my arm.  After a bit, I asked Kevin to let me go and and I took a deep breathe in and let it out and off I went.  I maneuvered Harley around the dry lot for a while..at a walk.. nothing fast. He did very well – and we then called it a day. Best to end on a good note when working with a horse. And I was not ready to ride in the fields yet. But it didn’t take much time for me to be ready! So much for slow starts.

Since that day I have ridden twice out in the fields. The last time – this past Saturday- I was able to tack up on my own. I have learned to yank the saddle out of my locker with one arm and I can toss it up on his back with one arm too.  It was very freeing to be able to do this on my own.

I also can ride with one arm so I switch from using two hands on the reins to one. It turns out my arms are in a “safe” position so I don’t think I will get a pain flare if I am careful – but again it is that dance i mentioned above. That day I was in the lead. Dismounting is a bit of a challenge. I now lower the stirrup iron and dismount on the  right which is the opposite side we proper English riders are taught to do.

Obstacles aside I can’t begin to explain the mental effect being able to ride again gives me. It is something I have needed. It didn’t feel like it had been two years since I had ridden solo. It was as if no time went by at all. I felt right at home in the saddle. I am so lucky to have the horse that I have. Some horses may have been too much for me after not being ridden for so long. Harley is a true champ. We have a bond.

My goal is to ride twice a week for now. I will have to be flexible on this as well as I live my life around things we have planned – social visits, traveling, and doctors visits. So I often curb any physical exercise for a couple days prior to doing these things because I don’t want to have a flare up of pain which may require me to cancel the plans.

But that is life as I live it now. I accept it. You just never know where you will end up…right now for me I ended up back in the saddle. How lucky I am….

….And Dr Williams has been sent a photo..with more to come…

More surgery / and my vanity

I’m sitting here this morning in bed. I’m having a bad pain day. The nerve pain is hot across my right side and chest and the there is that tingling tickling burning sensation that travels across to my throat. I cough. Nobody knows exactly why. They know I have a lot of scarring that has adhered to my chest under my arm and I have radiation damage as well. They feel my sensations come because of this issue. All these things that are very hard to fix.

It’s funny how such a little area can make a person disabled when it flares up. It’s very frustrating. I’m so much better than I was last year but I’m still plagued with pain and it’s too much of a focus of my day and it controls my life too much. So on Wednesday next week two surgeons are going to try to ease some of the pain.

My wonderful nerve surgeon and a plastic surgeon are going to try fat grafting. This procedure requires liposuction of an area on the body. With me it will be my stomach- and my love handles 🙂 -see the smiley? I’m all for losing some fat since I’ve put on weight from the medicine I take for nerve pain.

Anyway they spin that fat so they get the good stuff and then they inject in my areas of scarring and pain. The idea is twofold. The scar will be lifted off the chest wall which may relieve some of the pain . Think of having gum stuck in you pants pocket and the two sides are stuck together. Well that is my issue on the side of my body where I had the node biopsy. So your skin is all one piece and when one part is stuck onto your chest wall it throws everything off. My neck gets tight because the scar is so tight it pulls the skin and muscle all the way to my neck. I get rib and breast aches and muscle tightness in my back. All from this small area of my body being off kilter! So the fat will create cushioning under the scar.

The other thing that is looking hopeful with fat grafting is that the stem cells in the fat can help regenerate the radiation damaged tissues. This has been studied over the last few years and the results have been very promising.

So that’s where I am. My third surgery in the last year. All in hopes that I will get to an acceptable pain level. Pain free is likely not going to happen and that’s been hard for me to accept. But I have come to terms with it to a degree but I continue to look for ways to help it improve.

Thankfully I have an amazing surgeon who wants to help. He has brought in a trusted plastic surgeon to do the grafting as he assists. I offer myself up to their expertise and they are pretty optimistic that I’ll get some noticeable relief. So I’m praying this is so and crossing my fingers and toes for an extra boost of hope. If I get some improvement a second grafting can be performed. (More lipo!)

I did ask the plastic surgeon if he would put the extra fat in my face. He said he would during my exam but later thought better of it. Maybe it’s just too much for one session! Maybe he had been joining. I Just thought getting a few wrinkles filled might be an extra bonus!

Since my cancer and subsequent pain issues and because I have three teens who like seeing my hair gray – I have aged a lot in the last few years. So I have had some filler done in my face.

I can hear people gasping. But hello lots of us are getting Botox (I’m not a candidate in my forehead because I have too heavy a brow), fillers and nips and tucks. I don’t want to age gracefully if it is going to go this fast. It is not graceful. So I’m just trying to slow it down -and crap after what I’ve been through I deserve to do things that help me feel good about me.

I’m not one of the confident woman who can accept their body changes and aging. I wish I were. I’ve gained weight and I’m out of shape because I’m limited in the gym. I do walk a lot. But I am not feeling good about me. I’m used to being thinner and more muscular than soft.

I will say that some filler I have had I’ve liked and some I haven’t and thankfully I did not get the kind that lasts lots of years. I don’t like my cheeks probably because I’ve gained weight since I have had my cheeks done. And I feel too cheeky! But I like the filler in my smile lines and in a couple other facial lines. I’m scared to get the filler under my eyes. Which is a problem area for me so I invest in lots of concealer.

I share this because I’m not afraid to show my vanity which come from vulnerability. I’ve been tossed around the last four years. It’s been super hard . Sometimes I wonder why I am still so vain and not just thankful for what I have. The fact is I’m both. I’m thankful and vain. And truly it’s each persons choice what they choose to do or don’t do with their bodies. So I own it. I’m vain but I tell myself that’s ok because I’ve been through hell.

So when the surgeon was thinking he might put some fat in my face I felt excited and nervous. It’s like maybe I could have pain reduction and a cosmetic boost all in one. I figure he changed his mind for a good reason. Probably wants to stick to the real issue at hand. My pain. Which is just fine with me.

In the long run if I had to prioritize what is most important – getting rid of pain would rank #1. Obviously. So heres to surgery number 3 for my post cancer treatment pain – I’m praying for good pain relief . (And if he has some extra fat for a wrinkle or two maybe he would surprise me).

Oh and there is the liposuction 😉

Hey whatever it takes to keep the spirits up right?

Doing the Mundane

You never appreciate doing boring laborious chores more than when you have been unable to do them for so long. For me my weekend was filled with fun everyday boring stuff and I’m so glad I was able to participate. I still had some pain but often forgot about it as I kept busy. I’m sore as heck even two days later. My muscles are still getting stronger after being laid up for so long. But I’m feeling good and I’m happy.

So let me bore you with my mundane weekend. For me it was not a bore. It was bliss. 

There was Friday night dinner out -with my mom and my hubby as my dates. 


On Saturday there was a little butterfly watching as we began to spread sand over the dirt and stone of our chicken enclosure. 


We worked. The boys shoveled over four yards of sand and since I still can’t shovel  (maybe I’ll be able to rake again someday!) I moved sand along with my feet and that proved to be a great workout. 

We had time for a little communing with the animals. 


And fixing a Rooster with bumblefoot. 

And I have to share Kevin with his new gas powered power washer. He loves it. 

And we did  a large amount of gardening. We created a lovely area. 



My work posse didn’t want their photo taken but I bribed them with ice cream. It pays to have an awesome ice cream shop minutes from our house! I am So very thankful that my two sons worked so hard all weekend with me and even did shifts at their “real” jobs.  

(Look how tall they have gotten!) 

And of course we communed some more. 


We sanded and gardened our way through the weekend. I spent it with two usually surly sixteen year olds but somehow they were gracious and hard working. Maybe they also got the brevity of the moment. I was doing normal things again. Maybe they didn’t get it. But I sure did -and as I worked I kept marveling at what a blessing it was to put my hands in dirt again and work with the animals.  This is a part of me I’ve missed -being able to do work -I couldn’t shovel at all or lift much-but I did use the hand trowel and planted some plants.  Yes I did a lot of pointing and telling people where I wanted stuff but I spread sand with my feet and tended to a hurt chicken. I groomed my horses and I sat and enjoyed being with them. There is much I can’t do still -but there is much I can do and thats the gift. And for that I’m so grateful. 

Goals. What you picture. What is real. And lollipops.

Almost 6 weeks since surgery. I had forgotten from my first surgery what recovery was like. It’s a roller coaster. I’m doing more at six weeks post surgery than I did last time. The surgery is a tough one.  But I think I pictured a more pain free existence. I know I’m not going to have no pain there’s sooo much damage from radiation. But It’s better -don’t get me wrong – and maybe it’s because I’ve had a couple of rough days this last few days that maybe I’m feeling a little down.

 I was down at our new beach house a couple days ago and I was walking my dog Rudy. I must have been walking him with my right arm -the recently operated side- it was an unconscious thing- he must have pulled my arm which for me is like a big no no. Thankfully it wasn’t a hard enough pull that I really remember exactly when it happened. I remember mostly walking him with my left hand but we did come upon another dog and maybe it was then that I grabbed the leash with both hands and got pulled. I didn’t have the leash put in in its anti-pull setup. I bought it just for that but I was only taking him for a quick pee that turned into a walk to the bay and on the way back is when we met with John our neightbor and his dog Abby. So my bad. And later after a nice nap on the couch in Cool Breeze Cottage family room I woke up with lots of pain.  The burning pain and  radiating pain that makes me cough. The thing that I’ve wanted to be rid of but doesn’t seem to want to leave. It’s deflating. But likely due to radiation damage. 

I saw my surgeon last Thursday and he’s pleased with my recovery. I think he’s surprised that I don’t take more pain medication but I do take enough just so I can get out an about. I have been hoping that the need to use it will abate as I heal more. I’m to begin working on more range of motion exercises which I fear will bring me the pain I’ve had since the pulling incident a couple days ago.  But I can’t be afraid because there is the thought that more range of motion might alleviate some of the pain-eventually. Much of my pain since the first surgery that removed surgical clips is related to scarring and to nerve damage from radiation treatments. The damage tightens skin and tissue and causes entrapment of the nerves….and the nerves get damaged from radiation as well.  

Why I have such a severe case is unknown. But the long term painful effects of cancer treatments are really just being studied.  In many ways I’m a guinea pig every time I go under the knife and entrust myself to the skills of my nerve surgeon. My surgeon continues to suggest things we can try in the future. Fat grafting is one. It shows much promise. But it’s hard for me to picture my life like this. As a person with chronic pain.  Overall I’m much better than I was but I am afraid to get too optimistic. I am also bummed that we can’t solve the issue that makes me cough but I think we are getting closer to the cause- but fixing it may not be possible. Managing it may be my only option. 

Last Thursday I was feeling good. Then The dog pulled me and I feel like I went backwards. This has happened before- a few weeks ago when I overdid range of motion exercises. I recovered and continued healing. I got down then, and I felt the same fear then that I have now. That fear that I’ve done some damage to myself and it won’t get better. I don’t want to feel so negatively but it’s so hard not to be sometimes. The last four years have not been easy and the last year has taken me from someone who could walk out the door and not think a thing but whether I had my sunglasses to someone who has to worry about whether I have my pillow -which I need because I can’t sit without pain if I don’t have it-, whether I have pain meds with me, or if I have an ice pack or heating pad. It’s not what I pictured my life would be. 

I picture my life much differently. I see myself more free and more pain free. Then there is the reality of the now. I still feel sidelined much of the time.  I have to meld what I picture for myself to the realities. I know that we can have plans for ourselves and life will often take us on a different path. I will keep the pictures I have in my head as eventual realities. They are goals. They keep me going. Maybe they will be but not exactly as I picture. Coming to grips with the realities of what life is is very hard for me. On days like this I feel sorry for myself. I cry. On days like this I know I need to get my butt up and do something. Even if it takes medication to get me moving I need to do it. 

The other day at the nerve surgeons office I saw a young girl. She was from Israel. She was beautiful, maybe 25. She was with her translator. I was standing at the snack counter grabbing a lollipop – my surgeon always has lollipops-the good kind-Tootsie Pops. I offered her the container she shook her head no and smiled. She stood up to leave. She did well standing on her two prosthetics, happy, bc whatever procedure she had that day made her pain free. It wouldn’t last it was just a diagnostic procedure, but her smile was beautiful. I knew from chatter in the back office that she had been the victim of an IED explosion as she was traveling  in a bus- lost the lower part of both her legs. Seeing her was real life smacking you in the face. I wanted to hug her but offering her the lollipop was all I could do. You could see she was a girl who didn’t want pity -she just wanted to be rid of her pain. 

 Perspective. 

I thought of her today as I was writing this post. We all have to wake up with our realities. I think I’ll get myself up and go live my life and deal with mine.

It’s all in your perspective.  Sometimes my day sucks but I have a choice what I’m going to do with my day.

I’m going to try to go to the garden center and buy a perennial for my cleaned out garden bed….

I’m pretty sure that I’ll think of that girl often.

Surgery journal …it keeps on going 

So the last I left off – I think- is that I was slowly healing from my surgery. 

Recap – I had breast cancer surgery which led to pain for three years that was ignored by my breast surgeon. It exacerbated last May 2016. I was bed ridden. I had to begin a journey that would lead mye to a nerve surgeon that agreed that I may have a problem with surgical clips. This clip issue had been suggested to me by a physiatrist I saw over the summer.  Surgical clips are made of metals and are used often in surgeries to close of vessels. They have caused issues In patients but it’s not common or maybe not admitted by doctors that they are an -in fact- an issue. 

The nerve surgeon operated. Removed clips in my axilla (armpit) And he found some clipped onto nerves. Not the right thing to clip.  The nerve surgeon also cut some nerves and buried them into muscle. He removed a neuroma (bundles of scar tissue ). He was optimistic that he had cleared the area of clips and that these were likely the cause of much of my pain. He Closed me up and here I am just over three months later. 

Now I will say that I’m still in the process of healing. But I have had pain in the back of my armpit -it’s not new pain- I think my surgeon thought it was pain that would subside as he treated all that other stuff I mentioned to you above. That pain in the back of my armpit is becoming worse. And the symptom that bothered me the most -the nerve pain that made me cough -is still around and seems to flare when that armpit pain flares. Nobody gets the cough symptom. That is very frustrating.

Is it worse BC I’m more active and doing more things?  Well I’m not bed ridden anymore and I am doing more and the more I use my arm the more it hurts. I can’t work on my range of motion exercises much because it causes pain. And it hurts as a passenger in the car and when I drive. I tried a long ride to the beach a little over a week ago as a passenger and that about crushed me. I am not big on opiates so I’m only willing to take so much medication. It was a stressful trip to say the least. 

I went to see the nerve surgeon this week and he took a long time with me. He pondered my continued pain. He had some ideas of the nerves it could be. He hopes it can calm down and become a non-issue the longer I heal. 

So the plan is to get a series injections right in the areas of my pain. The injections contain lidocaine -a numbing agent -which is short acting and some steroid which we hope will calm the pain down. I get the next injections four weeks apart. I won’t know if this injection will help even for the short term for up to a week.  Then if  I still continue with pain a few months from now I will have to have more surgery. 

Yes I know. It bites. 

But I need to get this pain level under control so it doesn’t limit me so much. I’m limited socially and physically. I’m up and around which I’m so grateful for. But it’s not enough yet. My mom moved in with us at the end of November. I want to be there for her.  I don’t want to be dealing with my own pain issues that it limits me from helping her. 

I’m 75% better than last summer. Being bed ridden and now being up and around is a huge deal. A lot of the pain is gone. But what’s left is bad. If it weren’t for the pills for nerve pain I’d been in bad shape. I hardly ever tolerate any RX meds. I failed all the cancer hormone blocking drugs I’ve tried. I was very pessimistic about the drug neurontin also known as Gabapentin. It’s used to treat seizures but is very effective on nerve pain. Which is a hideous burning pain that can go from light burn to a blaze if left to smolder.  The drug has been great for me. I have little side effects. A few twitches here and there and memory loss. The memory loss is the worst of it for me. I put up with it because the pain control is that good. And the drug isn’t like an opiate. I’m just writing everything down and when I forget something at least I have something to blame it on. I have read coming off the drug is  tough. Not like coming off opiates but it can be hard. But I’ve read how to counteract any unpleasant side effects with natural products like magnesium – which can make the taper off the drug much better. But I’m not even there yet. I still need the drug -so in an unlike fashion for me I’m not going to worry about when I go off it. 

Nobody said that this healing would be easy. I think I just got in my head that it would be a done deal when all those clips came out.  I’m disappointed. But I’m so determined to get to a point where I won’t have so much pain. I don’t know if I’ll actually ever be pain free on my cancer side -but I’d like it to be much better.  And I’m not pain free elsewhere. It’s just that the level of pain that sets us back from true living can be different for each of us. And I met my match. 

The one good – well maybe great thing- that has happened is that from my experience I have been able to help other woman in the same pain situation as I am in ( post breast therapy pain syndrome). A couple woman have even gone to my surgeon after I mentioned him on the Facebook page that I belong to for ladies with post breast cancer therapy pain. 

It feels good that my hardships haven’t gone in vain and that my experience and what I’ve learned and shared could actually be help to others.  

I have a lot of things I want to do. I am so grateful for how far I’ve come. And I call upon God each day to help me to be more patient. I am doing the best I can.

I miss riding my horse. I miss farm chores. I don’t miss doing laundry though -I can do a bit of it but I try not to. This week we hired a cleaning service to come in and clean. It was much needed. We will probably hire them on a regular schedule. I just can’t keep up and my teens aren’t the best cleaners. And I’m kind of done with the eye rolling from them especially when I can’t pull my own weight doing chores. And frankly I don’t want it to be a fight. In the scheme of life it’s just not worth being mad at messy kids. Life’s too short. 

The road to recovery isn’t always a straight line. I’m learning to be more accepting of that. Right now I am better than last summer. I’m so grateful. 

I really am learning to live one day at a time. I don’t know how I’ll feel from day to day. So just focusing on today is the easiest for me. It’s forcing me to live more in the present. The theme to my last blog. 

I’m carried by the thank you’s I’ve gotten for sharing my experiences and hearing that what I’ve written has been empowering them has really be a saving grace. I’ve been carried by the good wishes of friends from all over. 

It’s not a road I’d wish on anyone. During my worst days I sometimes can’t find a thing to be joyful about. But I see that life happens no matter where I am or what I feel – and I want to live life. 

I orten  think of the Apostle Paul in the Bible and his unending optimism and want to call people to Christianity despite his circumstances. His letters never waivered in his goal and he never lamented on his circumstances though he was jailed when he wrote many of the letters that now are books in the New Testament. He found contentment in any circumstance. This was because of his love of other things outside of this earthly place and his faith of what lay ahead for him. 

Sometimes you have to try to enjoy life even when you aren’t where you want to be- whether that be physically or emotionally. I’m no Paul. But I can learn from him. 

This cancer journey has been such an incredible challenge in my life. It’s not easy for me to stop along the way and consider I need to be learning from my discomforts . I just want out of it. But in the moments where I can just stop and breathe and  just live in the present despite my discomfort I see how truly blessed I am. 

I don’t know where the road will lead but I’m on it – better to make the best of it when I can. 

October has come – some thoughts from a breast cancer survivor

Holy Cow! It’s already October. The summer slipped away from me as I rested in bed trying to stay away from pain. And as I searched for answers to rid me of the pain. Now it is fall- one days oozed into another and what seemed like an eternity  of time as I sat in bed day after day has slipped away so very quickly. I look back and I still feel as if it should still be June.

I’m going into my fourth month of this hell with my pain issues. The pink will come out today. It’s breast cancer awareness month. It’s a good thing. But it’s hard for me to sort out my feelings really.

Today my son runs in a cross country meet. I haven’t been able to go to any of the meets this fall. Which is a bummer. Anyway for October -the runners are going to wear pink shoelaces. My son wasn’t sure if he wanted to go to all the trouble to change his laces. He’s a teen and has his lazy moments. I kind of wanted him to want to wear them bc his mom had breast cancer and bc i am still dealing w the after effects of treatments. And he lives it with me everyday. He’s used to a mom who  is sick in bed. That makes me sad. But his wearing the laces -that’s just a personal thing bc this son and I are so close. His wearing pink is significant to me bc he lives with the real truth -the real awareness.

He wrote an essay for his AP lit class last month . Part of it mentions how he was effected by my cancer. It made me cry.  I so wish I didn’t cause my family strife in this way. I rather cause strife by being a nagging mom not a sick one.

Three years ago on oct 3 I had surgery to remove the cancer from my right breast. It’s was a stage one cancer. Early stage. And I had a procedure done called a sentinel lymph node Biopsy where I had 4 lymph nodes removed – all returned negative for cancer. During surgery  I had little tiny surgical clips placed in my breast and in my armpit -also called the axilla. They are used to control bleeding and they help speed up the surgery.  Not all surgeons use them.  I followed my surgery with 30 rounds of radiation. Later I learned that radiation can be as damaging to the body as chemo and the effects of radiation can show up years later. I’ve since come to know cancer survivors who suffer from the effects of radiation treatments. I’d like to say in hindsight I would change something that I did back in 2013 but I really don’t know if I would. I didn’t have the gift of hindsight at that time. If I have been asked if I wanted surgical clips in my body I think I may have said no but I can’t for sure say that.

After surgery, I had pain and limited arm range of motion. Radiation intensified the issue. A few months after my treatments ended i was shoveling snow and something happened – when I awoke the next morning I had tingling sensations that went across my chest. It was very painful and it made me cough. Over the years I have had pain in the axilla and in my arm and those terrible sensations that would go across my chest. Nobody knew what was wrong. I saw many doctors with nobody really helping except to refer me to someone else. So I gave up. I was able to deal with the pain and I tried to live with it -figuring this was the price you paid for getting cured from cancer. Then this year in late late May I began to feel worse. The pain was getting much worse -and the horrible chest sensations occurring more often and they were much more severe.

By June it was getting so bad I was basically in pain for our entire vacation and when I came home we began to really push for answers. Which has been hell. I was in a very dark place for a good while.  Read more about that here. But our luck changed when we found our way  to some great and kind doctors who listened. A physiatrist I saw said it could be an issue with my surgical clips as they are located in my areas of focal pain.

That sent me back to my original breast surgeon who treated me like I was an alien and sent me to another breast surgeon that left me wishing I’d used him from the start of my cancer journey . He was finally Someone who looked at me – right at me- and saw a person in so much pain and I could see his shock in his eyes. I had come so drugged to his office for my appointment that day and  I still had to ask to be placed in an exam room while we waited for him to get out of surgery. I had to lay down. Sitting for long is too hard.  He walked in and saw me on the table with a heating pad in my armpit and he was shocked I was ever allowed to be in that much pain and he was even more shocked when I told him I was unable to get out of bed much and too use my right arm much brought on intense symptoms.

He sent me to his pain management center a few days later -where I had diagnostic injections – and all of those docs  -breast cancer and pain doc and a plastic surgeon I also saw – referred me to a peripheral nerve surgeon that also listened  and was so kind. He has seen a large number of breast cancer patients who suffer like I am. Post Breast Therapy  Pain Syndrome is only just now getting recognized as a thing in the medical communities. Often you get doctors not understanding your pain and you don’t know where to turn. Which sends you bouncing from one doctor to another.

But this doctor got it. I liked him right away. We talked a good while. He did a diagnostic injection in my armpit and I reported my results to him. He was happy enough with the results to agree to go in and resection my nerves. He agreed that surgical clips could be caught up in scar tissue and nerves and that this could be causing my pain issues. He didn’t know why I coughed from some of my chest sensations but didn’t cast me off as s crazy person.  He knows the issue occurred after the cancer surgery so he feels it’s all related to my axilla and breast pain. My surgeon is worried I may have internal tissue damage from radiation which can make the case more complicated. The things that we have to help eradicate the cancer can damage us further.

So on October 12 -a little over three years since my original cancer surgery I will be having nerve resection surgery. And he will remove as many surgical clips as he can.  I’m nervous but hopeful this will rid me of much of my pain so that I can again be a part of the world.

This brings me back to pink October and breast cancer awareness month. I’m all for creating awareness. But I think many of us are quite aware of breast cancer and cancer in general it’s everywhere.  All of us have been touched by cancer.  Do we need to be made more aware than me already are? I think awareness needs to expand its scope. I know this is a big fundraising month for breast cancer organizations. And that’s the point for the pink in your face for the month of October. And I think giving is great to help further cancer research to find less barbaric ways to treat this disease. Because it’s barbaric.

In Mexico there is a clinic where they treat breast cancer in a very different way. So much less invasive -breasts aren’t removed -the cancer is treated through the heating of the blood -and it also it involves diet changes ,supplements , the use of hormonal meds like tamoxifen. No chemo. No radiation.  They have good results in treating early stage cancers. Many of their patients achieve remission which is no evidence of cancer in their bodies and they didn’t have surgery or chemo or radiation. Pretty amazing. There are alternatives out there.

The month of awareness needs to extend to the entire truth. Cancer is a journey for the person having treatment.  It doesn’t end the last day of chemo or radiation.  We are all left with scars. Some physical some mental some financial. I had all of them. Cancer doesn’t effect just the patient. It effects the whole family. People think we just should get on with life. And most of us who are lucky enough to be in remission do. But we have scars. Fear always follows us. Sometimes chronic pain infiltrates us. Sometime it pops up years after treatment.

We freak out inside at any weird blood test result. I had one yesterday. Liver enzymes high. I think it’s because I had taken a pain killer and Valium right before the  visit to my primary care doc for a pre-op check. But they are higher than my blood draw a few weeks ago. In my head swirls so many thoughts.  Rational and irrational. I had a chest CT that said I had nodules on my lungs and three docs have told me they aren’t anything. But when you’ve had cancer you can’t let it go so easily. I’ll get a recheck  on these things after I deal with this pain issue.  It’s the trajectory having had cancer puts you on. You never really let your guard down.

Let the awareness continue. But let’s not make the end of the story just that we are survivors. That you rid us  of cancer – you’ve really put me in remission and I will try to do the right things to stay there.  Let’s tell the whole story.  Survivors can end up with chronic pain issues and other nasty side effects from the treatments. They can end up with recurrence and other types of cancers. Don’t ask us to be thankful we are still alive and we should deal with our new normal. I am thankful but theres just so much more to it than just telling someone to get over it and be thankful and get used to a new normal. My pain wasn’t addressed early on properly and now I’m in agony. And now hopefully I’ll be in less pain soon. But the mental wounds are hard to shake.

There too many people that suffer after cancer. Some things needs to be fixed to keep this from occurring. We need better after care for one. And its coming -I see it now after hunting down doctors familiar with post cancer pain – but the progression is slow.

I’m angry inside – but it comes from frustration over my situation and I want to make people aware of the true realities of cancer – not just the numbers Komen and other organizations throw out about survivor stats.

I’m that survivor and I am here to tell you the truth.  The good, the bad, and the ugly. Cancer is just the monster that begins the domino effect of a journey you never ever wanted to be on. I’ve seen my strength and weakness pop up in the same minute. I’ve Seen the very worst of myself and the very best. I’ve learned I’m resilient. I’ve seen the darkest depths of despair yet I’m here to tell you about them.

I’m the woman at the walk to raise money for a breast cancer center that’s helps treat woman who are low income or who are not insured. I’m the woman lying on the table face down getting pain block injections.  I’m the woman laughing out to dinner with friends. I’m the woman in tears bc her doctor doesn’t want to help her. I’m the woman stuck in bed trying to plan her daughters journey to get into college. I’m the woman who makes meals when others need help. I’m the woman taking in those meals now so her husband has one less thing to worry about.  I’m the woman who is facing surgery three years after my initial diagnosis. I’m not the only one. There are more of us. We are warriors.

I’m here to create real awareness that the cancer may be gone but the journey is never over.

I don’t mind the pink but just know there is more to the story -a lot more.

Cancer means so many things. It’s bowled over too many people. It’s a journey of warriors. When you see all the pink in October and your sick of it maybe if you’ve read my blog posts of late maybe you can look at the pink in a different way and you can know the story behind the story and think of those cancer warriors making their way through life trying to pick up the broken pieces and live their lives. And think of those fighters who have left us. This month should also be about them. The ones who are gone.  The cancer org’s won’t focus on that. I have a list of those brave souls that I knew that were taken by cancer- I bet you do too. When you see pink think of them.

And on October 12 if you have a minute to send a prayer up for me or send good vibes for my surgery and a good outcome that would be such a blessing to me.

______

See More on my pain journey here:

Sidelined -the summer goes on. 

Powerless- in search of MY power. 

Did I leave? 

Sitting on the deck

 

Sitting on the deck

Earlier today my pain level was eight. I didn’t wake up with that number but as I get started in the day which usually means sitting up in bed and eating breakfast the pain level some days increases quickly. That’s what happened today. 

Last night I took a walk – but not my usual walk -it was dark by 7 o’clock and I think I was kind of shocked that fall  is here and it’s going to start getting dark earlier. I realized I slept through most the summer like Rip van Winkle except for I was sitting in bed -kind of a bummer. Anyway , last night I went into our  gym which is in part of our barn and I walked on the treadmill and I think that may have been the catalyst to my pain today. When you’re on the treadmill and you’re kind of stuck in one position when you’re walking and since I’m on some medication that can make me a little off-balance I was holding on with my “good” arm. It began to feel uncomfortable and I could tell this probably wasn’t a great idea and I stopped after only 11 minutes but the price was be paid today.  Walking on the lane is much more forgiving. I’ll have to make an adjustment to my walking schedule from now on.

Not gonna lie I can get myself into kind of a tizzy when this pain starts to flare up. So I quickly took some Valium which seems to calm me down and relax some of the muscles in the areas where I get pain from the nerves that are being pressed on. Or least we think they’re being pressed on. But we will know soon enough. When the Valium kicked in I jumped( ha ha in reading this as I edit I must say jumping is the wrong word- maybe slowly stepping is better) into the shower. Which for me is a big event and a difficult one. But today the warm water felt good falling across my body. I stood there just letting go of my anxiety and I let the water wash away my angst. After the shower I dressed which is another huge feat for me -so I got back in bed and I realized I was still feeling a lot of pain so I took about a third of a Percocet. A few of my doctors have said to me that I take baby doses of medications and I need to take more. That’s all true I don’t like any meds so I tend to take a little bit at a time but unfortunately when you take a little bit they only last a little bit of time. 

But today I took advantage of that time. Usually when I take Percocet and valium I am usually on my way to the doctors so by the time I come home the pain has returned and I’m exhausted so I go back to bed. But today I had nowhere to go so when the Percocet kicked in I had this feeling I needed to go outside. So I did.

 I’ve been hearing a lot of banging from next door. Our neighbor is putting up some sort of fencing in the backyard and Kevin and I haven’t been able to figure out what animal or animals are going to go live in that enclosure. So I went out to watch him – to try to figure it out. I guess I could ask him but I don’t really know him-  he’s the grandson of our deceased neighbor June he and his girlfriend moved in last fall. My husband has met him and I told him maybe he should go ask him what he’s building  and we both laughed. It’s so silly. Sometimes in the country you avoid people and other times you’re helping them take fallen trees off the lawn.  It’s a weird dynamic out here. You don’t want to interfere but you’ll help when asked.  My only concern with his fence is that it is really close to to our dog fence and whatever he puts in there will be face-to-face with our dogs. I’m thinking it may be goats because he has a shed and now that shed now has a new dog door sized hole in it. Often used as goat doors. He could be moving his dogs to the shed but I don’t think this is so. If it is goats I  wish he had built the fenced in area on the other side of his shed where there are no people that would be bothered by the constant noise of goats. And they are noisy I had some. I liked having them -sort of-but I don’t miss them! And my deck is right there very close to this new enclosure. My neighbor is a bullrider as a career – so I thought maybe he could be putting a bull over there but the fencing doesn’t look like anything that would hold a bull. The mystery will unfold or we will just ask him. But I told Kevin to get ready to plant some trees or bushes depending on what animal lands there. Bc I don’t want to sit outside on my deck with the cacophony of my dogs barking at their animals. Maybe bushes will be a buffer from goat noise.  

Once I was on the deck and I was done spying on our neighbor something just pulled me to sit down on one of our gliders and just relax. I hadnt been outside like that in weeks and weeks so I sat on the glider and I meditated and I fell sort of asleep had some weird short dreams. I prayed and I just sat enjoyed the sounds around me . The birds were not gone like I thought they were floating around in the trees and singing. I enjoyed hearing the sound of my horses walking around the paddock and the chickens clucking  in their yard and I even enjoyed the traffic passing by the front of the house and the neighbors chop saw whirring away. The sun beat down on my face and on my legs and feet it was beautiful and glorious day. And for a long time today I didn’t haven’t much pain. The wonders of drugs. For a while I was part of the real world.

A few times I began feel guilty about sitting out there. Because I try to take times when I’m not in so much pain to catch up on work for our business and I definitely had some things to do. But somehow I was just able to push that guilt  away and I was able to enjoy myself and relax. So unlike me. Must be the drugs. 

Today I was feeling thankful. Last week, I finally found a surgeon that is willing to operate on me –finally. We have a surgery date in a couple weeks. It’s like a huge gift but i’m almost too afraid to be too hopeful about anything. I’m so tentative about everything. This definitely isn’t the way I like to live my life- being tentative. It’s definitely not something foreign to me. But it’s something that I try to avoid. I try not to look at things in a negative way but this journey has been so filled with ups and downs (and a lot of downs )that I just can’t get myself too hopeful for anything. But for right now I’ll be thankful that I have planned surgery with a hopeful positive outcome .

But for today I am mostly thankful for just being able to sit outside for an hour and was able to enjoy the beautiful weather and beautiful scenery in my backyard, and the fresh air and a time to reflect. After I got up and went back inside I felt the need to look at the Dogwood tree out front of the house  that holds many  of my bird feeders. When I stepped out, I heard the rustling in the bushes and I went stood under the Dogwood tree and looked up and saw a little finch looking down at me along with a nuthatch. I smiled up at them and said hello. They flew off to the tree at the other corner of the house. I turned away but caught a few other birds moving about out of the corner of my eye. They are back. The feeders are full -and because my husband loves me and knows the birds bring me joy they will stay that way. I look forward to being able to fill the feeders myself again. I may even treat myself to a couple of new feeders when that time comes. It’s the little things.

Today for just a little while I felt normal again. I felt like I will feel well again and that there is that hope in me and that was good. Today was a good day. Today on the deck. Getting a date for surgery. Things seem to be looking up. But like I said I can’t get too hopeful. But I can be thankful for the time I had today just enjoying being outside being part of the world. It was nice to feel like a normal human again – even for just an hour. 

—-

Postscript – Kevin asked the neighbor what type of animal would be living in the new enclosure he was building. And it’s not goats! It’s a mini-donkey and maybe a companion goat(I hope not)  or another companion donkey(I hope)! I love donkeys and have wanted one for so long so now I’ll have one right next door. Perfect! 

Powerless- in search of MY power. 

Recently my friend and author Jon Katz wrote a blog post on truth and power. 

In his post he quotes author Bill Ferguson (“How To Take Your Power Back”) who describes what it means to lose your power in this way: “When you fight the truth of the way your situation is, you give it power. You make yourself a victim and put yourself at the effect. To get your power back, stop the resisting. Surrender to the truth of the way your situation is.”

This quote really resonated with me. This issue of giving up power in ones life isn’t foreign to me. But where this idea sits with me now in my current situation which has been incredibly hard for me.  I have been in terrible pain all summer. See links to those posts below.  I’ve been bed bound much of the time. It’s been a mind blowing and mind changing time. I’ve seen the worst of myself and maybe sometimes the best of myself. I’ve become dependent on others in ways I didn’t think would be necessary until I was much older. Having to have your husband wash your hair when there’s no chance of hanky panky isn’t where I want to be in my life. I’m unable to care for my kids like I want. Thankfully they are teens and have some ability to be self sufficient (sometimes that’s not as good as it sounds). I can’t care for my animals and let’s face it – these are my animals. Nobody else in this house would have all these beings to care for if it wasn’t for me and I am responsible for them and I can’t even carry a bucket of feed. 

But I don’t want to become a victim -yet I think I have.  I don’t want this situation to have power over me. Yet it does. I mean I can’t get out of bed because of the pain.  Maybe in my case I could be seen as a victim of this particular circumstance  – I didn’t ask for cancer (who does) and I certainly tried to deal with and find answers to my pain issues after cancer treatments to keep me from getting this bad.  Yet here I am. And I’m angry and scared. But this is not who I want to be. My husband and I have spent long hours this summer trying to find the help to fix me. I’m trying not to feel victimized. Yet I’ve run into many roadblocks and I’ve began to lose hope and that sunk me deeper into despair and then I have become more of a victim and I realize what’s really happened is that the hopelessness I’ve felt is really me feeling powerless in my situation. 

How does one get that back their power? 

According to the quote above I need to stop fighting the truth of my situation. But does that mean I’m giving in to it? Accepting that this is my life? It seems too unacceptable  for me to do that.  It seems more like giving up. But maybe that’s the point. Maybe by accepting the truth of my situation doesn’t mean I accept its going to go on forever but if I accept the truth of where I am now I can actually take back some of the power I’ve lost and begin to regain some hope. 

To keep fighting the truth of my life at the moment isn’t doing anything positive for me. Sure I’ll wallow in times of great pain and I’ll cry rivers of tears but perhaps to accept where I am now will enable me to see that this doesn’t have to be where I’ll always be. And somehow maybe that will make me feel less afraid and less like I’m in a cage. Will I then feel like I have power again?  Because I have lost my power and I never realized this as the truth until I read Jons post. 

We can so easily let our power slip away – we don’t even see it. 

I don’t know if I can accept where I am as my truth now. Even though I know it’s my truth. It’s the fear that this will be my truth on and on and I don’t know how I’m getting out of it. I’m tired of the loneliness of sitting in my room in my bed watching TV, being comforted by my dogs, reading books,taking pills, and oddly worrying about getting fat, or thinking things too sad to share here.  I’m just not willing to give into this fully as my truth yet darn it. But it is my truth right now. I do feel the times when I am able to face it and not let the what ifs take over and I give in to the reality a little a I feel that planner Anne step up and say OK what do we do now to get me the hell out of this place? I feel that power in that moment.  I know she’s there. Under this frustrated and weakend human being that old Anne is still there. And she has been robbed of her power off and on much of her life but has always managed to get it back.And in some ways she may never get it all back. But in this current situation that’s is not acceptable. She needs to get better. 

  I think power comes in many facets of our life and perhaps when we find power in all the facets we reach some true synergy .  I’ll be lucky to find that in this lifetime. There are still too many things that have power over me -but I’ll take finding my power again in finding my way out of where I am now. 

In my moments of weakness I have wondered if I’ve done something so horrible in my life that I’m now paying some type of penance at this moment in this situation. My dear husband said if my rationale were true we all would be paying for our sins in  some terrible way.  Criminals wouldn’t need to go to jail if it was tit for tat- ok he’s right on that point. 

 Am I supposed to learn something from this situation thats deeper than what I want to conceive? I don’t think things happen just because. I think things happen for reason and I think every single thing that happens to us in our lives gives us a chance to learn but maybe that’s my type A talking. I’ve had a lot of things happen over a short span of time and I’m still trying to figure out what I’m supposed to learn from these things. But laying here pretty much helpless has giving me perspective on some things maybe that’s the point. I now have a better understanding of how people with chronic pain live. It’s not just take a pill and get the hell up and do something -that’s so not how it works -maybe in the past that’s how I thought it worked. Now I get it. I know how I’d like to live my life when I’m finally freed from this bondage. And maybe I’ve learned to be a tad more patient.  But maybe this is one of those things that you understand better in hindsight much later in your life. 

Or maybe I’m having one hell of a pity party and I’m not willing to see it. 
 I really don’t want to feel like a victim of my own story in this situation -I don’t want to feel hopeless.  It’s just that so many doors have opened and closed on me on this journtey. I have this fear that if another door closes I won’t have the strength to find another door to knock on.   The closing doors are like kryptonite to my power.

But I have a voice and my husband has a voice and we can and should feel powerful to use it to tell my story a thousand times until someone listens.  I’ve been giving others – in this case doctors and other health professionals all the power- and I’ve felt powerless which led me to lose hope. But I have a husband to lean on that is a blessing because others in my situation might not have that. And he’s been the driving force behind getting me to places and getting me heard. He’s been the shoulder I’ve leaned on when I just couldn’t take anymore.  He’s as frustrated as I am and Saddened that ive gotten this bad. Thankfully this week I did meet a couple of doctors that seemed as shocked about this as we are. I’m too afraid to put too much hope in them. It’s just too hard. 

It’s been hard for me to write about it -physically BC using my arm for too long brings on pain. (i’m learning to depend on the “voice to type” function on my iPad and I’m getting better and better at it) and  to get myself to write about it has been mentally hard. But when I do write the truth about it I feel freer. That’s the power I have -to express my pain and my anger and at times my sorrow. This is my voice right here where I am now and to me writing is power and as long as I’m writing I’m not giving up and that’s hopeful.  Right? 

The only way I’m going to get hope  back is to accept where I am now and that it sucks big big big time but this situation isn’t going to own me and squash me. The way I’ve been feeling -victimized- isn’t doing me any good at all. Something has needed to change. Do I want this to have power over me? Do I have the power and the strength to face it head on?  Maybe I have been facing it but in bits and pieces. Sometimes being in pain just makes you want to shut out the world and sleep and not deal with this at all. But maybe when I face the truth  in those  bits and pieces I gain some power and I get back some hope. And  Maybe that’s the best I can do now – moments of power moments and of hope. But it’s something.

——-

If you need to catch up you can read  my pain story from the beginning of the summer :

https://notreadyforaarp.com/2016/07/24/figuring-it-out/

https://notreadyforaarp.com/2016/08/21/sidelined-the-summer-goes-on/