A New Fear

I have been a swimmer for as long as I can remember. One of my earliest memories that I have is of me taking swimming lessons in the baby pool at our swim club. Following that I spent years on swim team and also just playing in the pool. Many times you couldn’t get me out. I’d swim all day.

I had a respect for the water of course but I was never hesitant to be in or on the water. I spent hours riding waves with my dad and friends.

In the last ten years I stopped going into the ocean as much -the fear then was stepping on icky things. I was more wary of the currents and undertow. Probably because I had little Kids and even if they had ease in the water the fear of your child getting pulled out into the deep looms large for most parents I imagine.

I still had a love of pools if they weren’t too crowded (that’s a germ thing-yes I got more leery of the humanity in a pool as I’ve aged and well it grosses me out if there are tons of people swimming in a small enclosed body I water no matter how much chlorine is dumped in).

I love the water and I really love being near or in the water. We have a cottage just steps from a Bay. But I now have a fear of deeper water.

I was out on the bay the other day on my kayak. Kevin was along on his kayak. It was a chilly day. About 55 degrees. I’m a new kayaker. I got a boat with pedals as I can’t use my arm to paddle because Of my issues with nerve damage and pain. I was thrilled when I got the kayak. I motored around last summer and if the bay was a little choppy I found myself feeling somewhat nervous. I am no longer sure of myself as a swimmer. I can’t really swim which because of my limited use of my arms but it really didn’t seem to be a huge issue last summer because the Bay isn’t really deep and the water was warm. But the other day the water was cold and seemed deeper and it was choppy. I had wetsuit bottoms on but just a jacket and hat on. And I was wearing boots. Wellington’s. Maybe not the best choice.

While on the water as I was traversing some choppy conditions I felt myself panicking. A full out freak out was just on the edge of my brain. I kept picturing myself falling off the kayak. Or it tipping. Me sinking as my boots filled and my coat became heavy. I feel the fear now as I write this.

I had a flotation device but not on me – it was secured on the back of the kayak. I tried to reach behind me to grab but my limited range of motion and the rocking of the kayak made it impossible for me to reach it. That was a rookie mistake not to have put it in.

I told my husband I was feeling very scared. Kevin told me to take deep breaths and as I did I felt myself regain control of my thoughts. The choppy water wasn’t really that bad. The boat wasn’t really in severe danger of tipping. I tried to enjoy what I was doing and concentrate on the beauty. I’ve lost the ability of being able to do a number of things since my nerve damage became so bad and kayaking gave me the sense of freedom that I’d been craving. I didn’t want to lose that to fear.

We ended the journey on a good note. I was calmer but I had a wake up call. I’ve definitely lost my confidence that I could save myself if I got into trouble. I’ve never felt this way before. It made me mad. Just one more thing that had been taken away because of my limitation and because my body is weaker because of being mostly bedridden this last year.

But anger won’t solve anything. I’m a problem solver by nature. So moving forward I need to figure out how I can feel less fearful in and on the water.

Over last summer when I first went out to sit on the beach at the ocean I walked up to the waters edge and watched the waves roll in and I realized even then that I was very leery about even attempting to wade in to my knees and not for fear of stepping on something icky –it was fear I couldn’t even get up if I fell into the shallow but wavy water. As a result of this I decided to head to the neighborhood pool and allow myself to ease into a better comfort with the water. During the first visit to the pool I ended up in the deep end with a swim noodle and I was able to ditch that after a time and then proceeded to tread the water and I practiced floating. It isn’t easy to tread water with one arm but it’s doable. But this pool visit gave me confidence to venture into the ocean at least up to my knees or hips. And subsequent visits continued to help my confidence. I also worked on leg strength in the gym when I felt ok.

So why the panic the other day?

Well I’ve had another surgery since summer. Just four weeks ago. I haven’t been allowed to do much and maybe kayaking wasn’t a good idea. Maybe I felt vulnerable. I’m definitely weaker. It doesn’t take long to weaken when your on restrictions to not work out or do too much physically. And I think the cold water scared me. Cold water can be paralyzing. But most of all my biggest obstacle that day was my own mind getting the best of me.

I am not an “I can’t” person but over the last few years I’ve said that more times than I care to admit. I want to be strong again! Mind and body. It’s so frustrating to try to get stronger only to be met with Pain as a result. But I’m going to try to figure this out. I’m not likely to kayak anymore this year. It’s getting too cold. I plan to be in some type of workout program. We have a gym in our barn so I have no excuse to at least try. And somehow I have to get into a pool. We have some indoor pools nearby. (Maybe they won’t be too crowded!).

I just want to feel strong again. I still deal with pain and that’s limiting -I have had three surgeries in the last year to try to get rid of it and it’s much better -but there may always be some pain I have to figure this out despite that. It can be done. I know it.

Next spring when I break out the kayak again I want to feel I could cross the bay (it’s a mile). I may not ever try it but I want to feel like I could. I want to no be afraid. I want to be strong.

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?

Finding new roads or currents 

The thought I might never ride a horse again had crossed my mind from time to time this last year. I am pretty sure my own horses don’t really mind that-but it has been hard for me to concede to that fact that my riding days are over. So I’m not really going there yet. But right now I am not supposed to ride a horse. Not only my horse – any horse – no can ride.  This has to do with the fact I have had two major nerve surgeries on my arm and chest wall and a fall off a horse would definitely not be good for me.  

Had I known my riding days were limited I would have ridden more when I had the chance.  There really isn’t any sense in those regrets but that is how I feel much of the time. 

I am a very active person or I was. Since laying in bed with chronic pain for many months I am basically starting all over trying to get myself back into shape. It’s not easy when you have physical limitations and chronic pain. 

I have a whole list of can’t do’s:

  • Can’t ride a horse. 
  • Can’t lift weights with upper body. 
  • Can’t bear weight on my right side using arm. 
  • Can’t paddle anything. Like a kayak or stand-up paddle board. 
  • And you get my drift. 

So I’ve been trying to figure out what I can physically do because focusing on what I can’t do is just depressing and not productive.  And there are many more things I can do than can’t. 

So far I can

  • Walk. 
  • Ride a bike 
  • Ride in the front seat of car again. 
  • Drive a car
  • I can lift weights with my lower body 
  • I can feed animals 
  • I can brush animals with my good arm. 
  • You get the picture. 

The fact I want to ride a horse again is a good sign anyway. The fact that I can’t -for now – is just a hinderance. 

With our traveling back and forth to our beach cottage I’ve been trying to figure out what I could do for activity on the water. Kevin and the kids got stand up paddleboards and they are so cool! I can sit on one while Kevin paddles and that’s fun. We got a two man inflatable kayak and that’s fun too – but I have been just a passenger bc I can’t paddle it. Passengering is ok. It’s fun sometimes – but I don’t want to be the passenger all the time. 

I thought there must be a water device that has pedals.  So I looked up kayaks with pedals and they exist! I found out fisherman use them as it makes it easier to maneuver while fishing.  

So we found a kayak outfitter in Lewes ,DE about 40 minutes from our cottage. We worked with one of the salesmen and he gave us the lowdown on different types of pedal kayaks. We selected a Hobie kayak. The price was fairly high (I may have gasped) but I really wanted independence. I wanted an “I Can” that I could do with my family on the water and I wanted something that gave me independence like the bike did. The price was worth it. 

The feeling of being on the water is amazing. I love the serenity and the exercise. 

I love the freedom and independence. 

I’m glad I found another “I can”

——

Link to the paddle sport shop Facebook page where they posted our picture. 

Here’s some info about the Hobie Mirage kayak I got. 

Meet Daisy (and duke)

Meet Daisy. She is my new beach cruiser.  When we bought our beach cottage this past spring I knew I wanted a bike. But I never really felt like I would be able to ride again because of the issues with the nerve damage on the right side of my body.  I kept telling Kevin we needed to wait to look at bikes until I felt better. The thing is I don’t know if this is as better as I am going until we do the next procedure which may be fat grafting. 

My arm and side tends to get all “burny” and achy feeling when I overdo. Ice packs are my friends. As are heading pads it depends on the moment. And I don’t know what overdo is. It varies -so I hold back on the things -like getting a bike. 

The other day kevin saw an older neighbor in our new beach neighborhoood  (we are like the babies in this neighborhood I am discovering !) and she was riding a three wheel bike. Kevin thought maybe I could try one of those to see if I could ride easily using just one arm. I thought -three wheels!? That’s a tricycle – but ok why not. I need to be open minded because I have a disability now and I want to adapt as best I can to be able to live life the best I can. So we planned to just go look at trikes. 

And if you are looking at the picture Daisy isn’t a trike. She’s a bike! Pretty as can be. 

We stopped at a bike store on route 1 as they were getting ready to close. We had to have our beach time and didn’t plan the timing too well but we lucked out and found an accommodating  store even though it was just about closing time. 

Two beautiful young woman were getting ready to take all the bikes set up in from t of the store inside. I could tell immediately they were Russian. The shore gets many young people that come over to work the summer shifts. I wanted to start my whole convo about how my kids are from Kazakhstan blah blah but I didn’t bc they were closing.  I don’t have those convos anymore now that my kids are older bc they are often with me and I think it’s their story to tell now. And they stay mute. But once in a while if they aren’t around I like to tell it but I had a bike to try so I stayed quiet. 

The manager of the shop a thirty something guy with a beard told us he didn’t have trikes at this location -bummer. I could tell he didn’t like the trikes. Why did I know this? Because he basically said so. I guess I wasnt too keen on them either  especially after he said how much space they took up in his small shop. I didn’t want big and heavy – having a bad arm doesn’t bode well for having to maneuver a big bike. 

I explained my plight – show me a cruiser with big long handle bars so I don’t have to reach far. And he did! There was an entire fleet of bikes I could choose from and I saw the yellow green cruiser with the white seat and I asked them to pull that one out. 

I had a long light sweater on over my bathing suit which I didn’t take off when I got on the bike -I was too excited -so I just held it up with my hands as I rode.  It must have made a pretty picture! 

The seat was so comfortable and it was so easy to peddle. I rode around the lot laughing and almost crying because the feeling of freedom was so immense. I can’t explain well but after being so sidlelined for so long the feeling of moving on the bike was amazing. It isn’t a horse but it’s something. 

Kevin turned to the manager and said “I will need a bike for me. She will be taking that one.”

I laughed and rode around and around. 

And Kevin bought Duke. Kevin is not sure about naming his bike but he’ll go with it. He is just that way. 

I love Daisy. And now she has Duke to spend her time with. He’s a good looking bike. A cruiser but manly in his build. 

We rode all over the neighborhood the first night. I was sore the next day and my arm hurt but I likely used it more than I should.  I can easily ride here with one arm.  My left arm is not my dominate so asking it to do more is awkward for me. The right arm wants to jump in and help. I’m learning my bounds. 

I sent my surgeon the photo of me with Daisy. I owe him so much thanks for getting me this far. I still have a ways to go but this is miles from where I was.  I did ask him if bikes are ok and I promised that I was not riding my horse. He responded with happiness at my ability to ride a bike and said bikes are ok. Horses not ok. 

Yet. 

But they will be. It’s a goal. 

But for now there is the freedom of riding Daisy. 

And for the ability to do that I’m very grateful. 


Duke

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.