Post Mastectomy pain syndrome

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

Recovering kind of….bites

Well I am into my second weekend post surgery. I am healing. If the itching is any clue then I am healing well! I have gone from pain drug nirvana to non-pain drug – well lets say discomfort – as well.  I am not a fan of pain meds. Well…not true… I am a fan…they work and make you feel ever so spacey and dreamy. I slept so well on them. I take 1/6 the prescribed dose as well but I still felt if I am not in a lot of pain I would not take them. Still the discomfort makes me less mobile and well maybe that warrants a reason to take some. But I don’t- too much fear I suppose.

I get the drain out on Tuesday and I will take some for that procedure. It isn’t fun. But worse is having the thing in. It has been a – I really want to write shit show here- but instead I will say a tad of a pain – literally and figuratively to have this drain. If you don’t know what a surgical drain is you are lucky and look it up bc I don’t want to explain it more than needed. But my lovely husband tends to the drain upkeep – God love him- bc if I had to I would puke I think – I think this is because it is all happening in my body and I would like to ignore it as much as possible.

The drain is a pain. You are carrying it all the time- this appendage. Showering is tough. I shower in a tank top so I can keep the bulb pinned to something so it doesn’t hang down. Then I get out of the shower with a soggy ,dripping tank top on. It’s fun!

The drain also sprung a leak twice this week. The first time in the middle of the night. I woke Kevin but I really don’t like to do that since he is caring for everything (Me, my mom, and household and farm stuff ) all day. I want to grant him some decent sleep. Though I think almost nightly this past week a dog has also woken up in the middle of the night and either needed to go out, puked or pooped somewhere in the house. Which got Kevin up. Anyway I woke Kevin to fix the drain – I said sorry with my nicest voice. It wasn’t anything I could do alone.

Calling the surgeons office about the drain problem rendered an answer that this was all normal. Really?  I have had them before and never had anything like that happened. I will say it is  not a fun event and the second time it happened it ruined a new shirt – I should not have put it on I know…I take full blame but still grrrr.. and ick. The drain remains painful as the incisions heal and there is less drainage…so think a couple chopsticks lodged up inside your armpit..right… feels great!

I hear you saying – why won’t she just take a pain pill…I know, I know.

I have come to realize that five days is my limit after surgery. Five days to keep a good attitude – like I got this! attitude (and I am normally still drugged at this point), and its five days that I think I should be feeling well and start to feel guilty that I am not up and around feeling good. I have walked once, done squats and lunges – all probably too soon. The walking was ok but the second drain issue occurred just after that. So now I am waiting two more days until this drain comes out to do anything physical. But five days is my limit and then I get cranky and frustrated.. not the best look on me.

I have no idea how the surgery has worked. It is a 4-6 week recovery and 2 of those are supposed to be off work. So it’s going to be a while. I am supposed to start PT around week 4 – but I am hoping I can do some lower body stuff next week.. I dread PT. Thus far PT has been so crummy for my arm.  Maybe this time will be different! It all starts with ATTITUDE! Rah Rah! Haha…

I have found this time around that there are some items that I have come to rely on during this recovery. I know I am bored if I am keeping tabs on this stuff! Sorry for my ramblings…just needed to write.

First and foremost – a back scratcher. With 12 plus inches of scar and a dumb drain -things get itchy. For some reason this time they sutured up the skin – maybe because it is a graft and then they put this clear large adhesive covering over the entire graft and same for the donor site on my back. And this covering is tight! But it allows me to be able to shower normally so I guess thats good. But as I recover the itching is soooo intense…so the light touch of a back scratcher is wonderful.

Next is medicated chapstick – well this is a must have always but for some reason I am very needy of my chapstick as I recover. And at this minute I just looked for it and can’t find it- so now a search will need to be set forth. Note to self- get more than one medicated chapstick at a time. I picture it chewed up in some corner…dogs…nope FOUND it! yes!

Gauze and bandaging- I go nuts sometimes at the drug store on first aid items. Having kids and also having a small farm where we get splinters, blisters, step on stuff etc I am super paranoid about first aid.  I now am so happy I did over-buy because gauze and tape have been needed for this stupid drain.

Pill cutter-this is awesome- I got it as a parting gift after my one night stay in the hospital – where they were very good to me and to Kevin who also stayed the night. Yes I got parting gifts I was so excited! The pill cutter is the bomb and will go into my newly organized linen closet. I got bored the other day and had the fixings to redo the closet later in my recovery but I found I could sort items that were in the old crammed bins easily sitting on the bed – so new organized closet done. Anyway a pill cutter that cuts like butter is a must for your medicine cabinets.

I thought the the exhaling thing the hospital gives out so you don’t get pneumonia was cool but I got bored of it after two days home. So though helpful,  I don’t see it as a long term medical item that I will keep.

Oh and of course I got to keep the hospital socks. I have tossed out too many of these things over the years but they are great as a no slip alternative to slippers. Why are slippers called such? I know bc you slip them on- but they aren’t the most safe shoe!

Ice water has been another must have and so the trips to the bathroom are frequent…which is annoying!  I am one of those people that have to have liquids with them where ever they go.  And I mean I even carry bottled water into restaurants. Once I was even told by a very stern server at one restaurant we go to I could not have my own bottled water that I brought in because some people bring vodka inside the water bottle and get a glass of ice and drink their own alcohol. Is this really a thing?  I know teens do that stuff but I am not a teen!  I seriously just laughed as I was typing this! Crazy!

Last is magazine, puzzle books, and laptop. No explanation needed here.

Oh gosh and finally- my adjustable table – that allows me to reach all this stuff I listed – and my meds, and books and laptop etc! The thing is the bomb. Such a nice item when recovering from surgery or even the flu.

Recovery is just a process. And I am so impatient. I know with a surgery like this the benefits will hopefully show as time goes forward. Now I just have to take it a day at a time. I have just had more than my share of surgeries. I am sort of done. I hope this is it for this problem.

Well I brightened my day just by writing this. Nobody even has to read it. I just feel somewhat better. I think I will walk to the barn.

Think of me Tuesday at about 11:30 as they remove this drain. (But probably nobody is reading this by this point. I likely lost them at chapstick.) Oh well! I’ll be brave!

My closet- so proud
More closet
The tray and all my stuff

 

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?

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.

Meandering moods 

My moods have waxed and waned lately. The other day I was in a terrible mood. It was one of those that was just making me feel ugly and I swear it permeated out of me and I just looked ugly too. Which didn’t help my mood any.

I am tired of dealing with the pain and I’m tired of missing out on doing things. Some days I feel like I’m about to burst with being tired of feeling crummy. Add life’s doling out other stuff like my daughter being in two car accidents in one week you could understand why I might get moody     .

But it’s not who I want to be.  We are all allowed our moments but I don’t like those moments to last. I don’t want to put negative energy out into the world. Don’t  we have enough of that? I feel like we get back what we put out.  I will tell you that it’s not easy to put out good stuff when you feel crappy.

I seem to find a change in my down spirit when I go looking for positive things. I know it’s bad when a baby goat on Facebook  doesn’t make me laugh. When I get like that I know I’m craving nature. The real kind -like me being out in it. And that’s not always easy now BC of the pain. But when I want something I somehow will figure out a way to do it.

Walking has become important to me. I know that if you keep moving you keep moving. So I keep moving. Even if I don’t want to. If I have to I take pain meds and I go. Pulling in the elixir that nature freely gives lifts my mood most of the time.

When my mood is up I am vastly aware of all the good things in my life. I see how one small area of pain can turn gold into ash. It’s all perspective. And some days my perspective will be positive and others not so much. I am only human.

I keep looking ahead to better days. But I don’t want to waste the days in the present. Waiting is fine but we need to live while we wait.  So I do what I can. I live the best I can. I try hard. Sometimes I’m just tired.

I have another surgery April 21. I am optimistic that my surgeon can help much of the pain. I’m grateful to have found a doctor that is so dedicated to helping woman with post breast therapy pain. Multiple surgeries aren’t uncommon in this group. In the waiting room on one visit I met a woman who was going through her 19th surgery. The third with my surgeon. We exchanged contact info and we are in touch and she joined the Facebook group for post breast therapy pain that I am in.

On that same visit I met Mary. We had “met” online on that same Facebook page a while back. It was fate that we had appointments the same day. Mary and I suffer from the same pain areas and we lament to each other. It feels good to connect with people who are living what you are living.  You don’t feel so alone. When I left the surgeons office that day I felt happy.  Even though I felt crappy. I like days when I can feel happy and crappy at the same time.

I think about what I’d like to do when I feel better. How I’d like to help others. I want to share this story with others. If I could save a person one less closed door, one less doctor telling them their pain isn’t real , or that it isn’t from the cancer treatments, – I’d feel so great. This story may always be dynamic but i know I have circumvented the system and I know that can be of great help to others

There are other things I want to do to help others. I might be able to do some. Some I might not. We will see.

I also want to do things for myself that I havent been able to do for some time – ride my horse, paddle a kayak, swim , lift weights, do laundry (ok that’s a stretch) , cook(sometimes), and spend time on the beach just being.

See what I mean about living in the future? I thinks that’s ok but I want to live here and now.  I want to make now the best it can be under the circumstances and sometimes it takes a lot of effort to that. I have learned to be resilient over this last nine months. I have dealt with pain, surgery, loss and grief and more pain. I am strong. Even in my worst moments there is something inside of me that wants to keep going. Thats been a beacon during some of my hardest days. That little niggle of strong.

Today we have been pelted with a snowy rainy mix and I want to take a walk later to see how the sun hits the snow on the trees. Maybe I’ll get some photos.

Right now I’ll share some beauty from my walk the other day. I decided to walk into the cornfield.

I hope I am putting out some good chi. I’d sure like to get some back.

A glimpse of the lane along the cornfield.

Pine trees at the edge of the field

Sunset looking at the back of our little farm.

Winter cornfield.

Another look at the back of my farm. I didn’t get rid of the orb. Kind of liked the vibe.

Cornfield selfie

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.