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.

IJA+0B79Q5mSl4oX8g0%Ow

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.

Sx21krF%QrmXjWy+Yaq44g

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!

 

Valentines Day Surgery

Not many people would opt to have surgery on Valentines Day but I did! I had one on my 18th wedding anniversary and had cake when i woke up. So maybe tomorrow some sweet confection will arrive at my bedside providing I can keep it down.

Tomorrow I will have another surgery to attempt to improve the pain I have been having for five years as a result of my breast cancer treatments. This one is actually removing my scar which is damaged by radiation and keeps getting stuck on my chest wall which we think is causing some of my nerve pain.  Part of my back fat(I have plenty of that!) and skin and blood supply will become part of my armpit. Its amazing to read about -Tdap flap -as it is called. Usually it is done on the breast as part of reconstruction -but these flaps are now used all over the body to relieve pain from scars and improve range of motion where applicable.

My new plastic surgeon for this surgery-  Dr. DC – is not new to me really. I have been seeing him for cosmetic things for a few years. And he is aware of my vanity and my pain issue. He just happens to work on a continuous basis with cancer patients. He firsthand has seen the damage radiation can do- he’s seen a lot.

Most of us with breast cancer even early stage like me are given the warnings about side effects from treatments  – but still have the treatments bc it gives you some sense of control during a time when you feel very out of control.  And most of us don’t have too many issues after radiation – some of it is short lived and some shows up years later. We don’t know who will end up in severe pain as I have. But my pain issues have a trajectory and I am beginning to piece things together but It is really of no matter because I can’t go back and change things. Hindsight is 20/20!

Anyway Dr. DC is a great person and a top doc. I will miss Dr. Williams my nerve surgeon as he has been the lead or assist in my last three surgeries.  I am just used to seeing his face in the OR and I trust him. He doesn’t work out of the surgical center I am going to. But he has given his blessing on the approach Dr. DC has in mind – so here we go.

Nobody on this journey wants to have multiple surgeries. I don’t crave going under the knife or the 4-6 weeks recovery.  It is when you live in chronic pain that you realize how much life can be taken away just by a bit of pain – like say in the armpit – and you search for some relief.  Thats what I have been doing.  I don’t write about it all the time anymore because that just gets morose.   When someone starts the cancer fight people tell you or  post – “you got this” , “be a fighter” etc. But after a while people have to go back to their own lives and you are out of focus – and this is how it should be. Now I am sure people think – “Anne is having another surgery?”, “Oh poor thing”.  LOL I get it. I wouldn’t understand either- and I am so glad most people don’t get it because  that probably means they aren’t in terrible pain day on day.

I have been cancer free for five years! That is a huge milestone. And praise God for that. My oncologist pointedly told me not to get too comfortable with this milestone reached – because the cancer can come back..Yes gee thanks Dr. HH – I don’t have a false sense of security but I certainly am trying not to wake each day with a sense of panic – I did that for long enough- so let me have some serenity- stop trying to burst my bubble. I live with freaking chronic pain. Isn’t that enough! Reminder is there daily- thanks!

I can say that I am much better than I was almost 3 years ago when the pain was so bad i was bedridden. For that I am thankful. Dr Williams got me this far. This time around I think I would like to be able to lower my dosage of the nerve pain medication I take.  Which I can only do if I have less pain. The meds leave me with low energy and some other side effects that get tiresome- esp weight gain. My doctors would like to see my arm work better and my range of motion improve. So we will see. Sometimes you just got to do what you just got to do!

I am off to eat some cheesecake. We had an early Valentines Day lunch today and we took the dessert to go. I will also be eating again around 11:30pm because I don’t do well fasting at all- and I especially don’t do well when the surgery is late afternoon as mine is tomorrow afternoon. Thankfully I can have some water 4 hours before surgery. I am sure this is so they won’t tear my veins apart trying to get an IV in! Been there! I am bound to become somewhat hangry by 3pm- maybe they will drug me up prior – or drug themselves! Hangry on me isn’t pretty! Bless those nurses. They will be probably be shoving some food into me when I am in recovery!

Happy VD Day ❤ (Send some good vibes out for me tomorrow if you think of it!)

T6f0mTIUSJOiS9xmn88aOw_thumb_50b0

In January I went to the National Aquarium in Baltimore, MD. It is a spectacular place. They had the Jelly Fish Exhibit and it was really cool. Don’t these look as if they are lighting up from inside?

 

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…

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. 

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