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.

Guilt

Author Note—Each day I have meant to break this unplanned writing hiatus but it just hasn’t happened. I have plenty of topics to write about – I just don’t make time for it- or when I do the words seem to fall flat. Usually when that happens I know maybe it because I am not being as honest in my writing as I should be. Sometimes there is a balance being able to be honest and keeping a boundary in my writing so as not to bring hurt to others I care about. Sometimes I just can’t find that balance and I don’t post what I write – but it still exists perhaps as a journal entry – or something I can go back to later. Either way the words inside me have been purged and sometimes- if I am writing in distress -that helps and there is no need to send it out to the “webisphere”.  But I want to make writing my habit again. I really do. So I just need to DO It!

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Soon after my son – I am going to call him SonA- went out of state to rehab I found myself sitting in front of his PA at the primary care office we all go to. I was there with another family member about their medical issue – and there I sat quietly in the small exam room- but there was that elephant in the room. PA knew about SonA and that he was in rehab. We had briefed him on the phone about it. So I wasn’t sure if I should bring it up to brief him on the latest info or stay quiet. 

 I didn’t want to bring SonA up because it was my other family members time but between the hellos , how are you’s and getting to the medical issue at hand – it came up. It began with just an update. SonA was going to be moved to a transitional program because there was an issue with insurance. A big issue that had required involving PA -but that is another story entirely – but it had been rectified by the time I saw PA. SonA was to look for employment, go to group meetings daily and see a therapist weekly. 

We chatted a bit about addiction and mental health issues. And all at once PA looks at me and tells me not to feel guilty. I looked at him trying to form a sentence – was I going to cry? He continued to say that so many parents blame themselves for the choices their kids make and that I shouldn’t because this was not my fault. I thanked him and told him I didn’t feel guilty because I know the choices SonA made were his own. Just as any bad choice I have made over my lifetime is not anyone else’s fault. Even though I blamed some of them on others in the past.

But I wasn’t really being truthful – there is guilt – it is multifaceted. So often I think to myself – did anything I did as parent push SonA into addiction? Did we have a bad phone call while he was at college and he went off angry and with a Fxck You attitude and guzzled a bunch of booze and that was the domino that turned into alcoholism? Did I not try hard enough over the years to get him to talk to therapists we took him too- where he would chat about his brilliant ideas (and he is amazingly smart) but he would never open up about his troubles? I begged him to give them a chance – he really never could. Or as he was growing up did I add onto the trauma he already had from being and adopted child? 

I wasn’t a great mom. I was in over my head. I got angry, I yelled, and I spanked my kids. I believed in spankings. I don’t anymore. My dad believed in spankings, we got the belt, or we were threatened with the belt. As a mom, when the kids were young, I had many convos over spankings vs no spankings, time outs vs time ins etc etc. All I can say is in hindsight I have changed my tune on many things. But I know I thought when I was raising my kids I was doing my best – and I was. But now I spend time hating myself for being so rigid, so stressed- just not the mom I thought I would be.

 I have guilt that I am trying to work on. I have apologized to my kids. Told them I hope I was fun sometimes. Was I fun? I think I was. I remember shopping in Walmart so many times for art projects that we could do on a hot summer day, or after school. We painted, and glued. Once or twice we all made gingerbread houses. I played with my kids, I love toys and I loved to play. I remember all of us dancing in the family room to classic rock. So I was fun too. But I still have guilt. 

I guess when you have kids that go through hard times because of their choices any parent may feel some of the way I do. I truly know I did not make my son into an alcoholic, I know that my son has had some mental health issues for a long time. But what I do know is that we spend our lives trying to undo the damage that our childhoods inflict on us. I hate to think I contributed to my son’s issues.

I think even the kid who grew up with the best parents like my husband did will not come out of childhood unscathed. He himself is an alcoholic with 34 plus years of sobriety under his belt.

We never come out of childhood without battle wounds. As we are developing our brains as young kids – becoming a more fully formed individual -we are effected by so much around us.  Then we spend much of our lives making choices based on our early experiences and we inflict that damage onto others and but hopefully we give them our good stuff too- it is why there are cycles of the same behaviors in families. If we are lucky and we begin to see the issues then we can begin to do the work to better understand ourselves –  and we can learn how the experiences in our lives have driven how we behave…and then we can work to have better reactions and to make better choices. Some people never get to this self discovery part. So I guess I should be happy I have. 

But that still doesn’t take away my guilt. I just have it. I want to forgive myself for not being an awesome mom. I am working on it because I do know I did do some good things. But there are so many things I would like to redo. Maybe thats why some people dive into grandparenting with a vengeance so they get a redo. Some things are so much more clear in hindsight. We can do so much better when we have gained some wisdom. 

SonA called me early on in his rehab and I again apologized to him. He said it wasn’t my fault. He said that I had been a good mom and he had been a shitty son.  That hurt too. You never want your kids to feel so badly about themselves. 

I told SonA he wasn’t a shitty son. Had he been challenging? Yes. But I told him he was a kid and I was the adult and I have to own my part- there were times I could have done better – responded better.  He has a beautiful mind – a beautiful soul. He just has some things to work on if he will trust the program he is in and the therapist he is seeing. I don’t want him to live with guilt. 

Are we just destined to it? To live with guilt? Maybe when we feel guilty it is an opening to begin to dig deep into that feeling – own the mistakes, learn from them and heal. That is what I am trying to do. Own my mistakes – look at them and then work with them – if I need to apologize for something I do.  I try not to soak in the guilt because I get stuck there and that isn’t healthy.  I am a bit stuck now. I probably need therapy and will look in the fall for someone – I have so much going on this summer. Maybe I will pull myself out before then. Writing this helps…even if the mom police want to shame me. 

But the good thing is I am still a parent and I  get to be an improved parent to my kids. I get to make the adjustments and changes I needed to make. My parenting goes on though it has a changed role now that they are young adults.

But guilt can run deep. I have learned that others might forgive you, God forgives you, but sometimes the hardest thing to do is to forgive ourselves. 

Am I a writer anymore?

I spent the better part of an afternoon this week writing a post about Mother’s Day.  I wrote then edited, started over and edited some more. Sadly the piece just never came together for me. This has been happening a lot. I either begin a piece and can it because I feel like the words are all wrong or I get an idea and I write it in my head- like in the shower- and I never get around to writing it or I get overwhelmed to start it for some reason.

Overwhelmed is a newer word in my vocabulary. There was a time where I could handle many things at once.  I could be very focused and multi-task. Now I am overwhelmed if I have to many things on my plate – which I do because I get overwhelmed and lose focus and then I go shop online. Because I can focus on that. Who can’t obsess over shoes?

But I just wonder am I still a writer?

I imagine a lot of this stems from the last few years and all the surgery for pain and the meds I am taking for nerve pain. It has to have had some effect on my brain. I also have many distractions.  Though my kids are gone most of the time at college and one lives away, I have a lot of responsibilities and distractions. My aging mother lives with us and requires help and rides to appointments and such, we have animals that need care, I run a small company part-time- etc etc. I love these things but I seem to be easily distracted and if pulled away from one task – and it may be trying to write – I sometimes forget to go back to that task until hours later…by that time the outline in my head that would have been a writing piece is gone. Or I read what I wrote and think it is awful.

I am having a hard time getting my thoughts on paper. I am not sure what to do.  I know the best thing for any activity you love to do is to practice it. So if I want to write I should just write – right?  So maybe that is the key- but it feels overwhelming. SUper OVerwhelming.

I did pick up a book at the $5 and under store that is titled “400 Writing Prompts”. It is just as it says- it is filled with lots of questions that could spur a writing topic.  Some I would not write about in a post , like: Plan your perfect birthday party.  Seems like thats not really a great topic for the blog… but hint: It would include Garth Brooks as the band, and maybe Dwayne Johnson as the eye candy for the ladies…ok maybe there is something to writing about topics that I would otherwise skip. I can be silly with them- except I am not kidding about Garth.

I could write about how every spring our house in swarmed by tiny black ants. They get into the dog food. They find a candy wrapper in my purse- yeah thats fun. One just crawled down my arm – ergo what I even mention ants.

Ok so I got distracted…what the heck was I saying?  Oh yes the book. Maybe I need to take a question from the book each day and write about it. It could be short or long-no pressure. Maybe write on “Would I ever get a prenup?”(yes that is in this book!)  What the heck? That ship sailed 20 years ago!

Then there is my photography.  I have lots and lots of photos and I never share them. Well I share some- but I am now so overwhelmed by having so many I get freaked out at over editing them. Most of what I share comes from my phone. Why bring up photography Anne? This is about your writing! Well yes but it is about stuff that overwhelms me too.. like ants in the house.

I know that creative non-scattered (ok I always was a little scattered) person lurks inside I just have to find her and slowly drag her out. If my writing has changed then maybe I will have to do my best to make it as interesting as I can.

See now I am distracted because my son – home from college until he heads to Maine for the summer- is putting the furniture out on the deck and patio- what a nice boy- and I need to be out there to guide him. Not knowing this task was going to occur I sat down to ice my back because I had injections today and I wanted to write. So now I hear him dragging stuff around. See distractions galore!

I guess I am done for now. I think taking a topic out of the book might be a good plan. I will try it in the next few days. Maybe “How would I engage a hostile audience?” will be my next topic…is give them the finger an appropriate answer?

Ok – I have to go – there is a wicker chair that needs my placement expertise.

 

 

 

 

 

 

Ups and Falling Down!

The other day I took this picture:

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When I see this photo I see accomplishment!

I was trying to mark a milestone.  I had just accomplished the feat of taking the wheelbarrow out of the barn and rolling it along as I scooped up horse manure. This may sound super boring and probably an unsavory job to many people but it is a job that I happen to like – you can get a lot of thinking done when you scoop poop- and you often have the company of one or more farm animals. I have been unable to do this job for quite a while because of my chronic nerve pain in my arm and back.  So I was having a “look at me ” moment.  I thought if the nerve pain didn’t flare up too much the next day I would post this photo and brag on this accomplishment.

But then this happened!

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Do you like the dog as prop in the photo?

This must have happened because I was so full of myself from picking up manure! I was in the chicken yard grabbing some items I left in there and I turned caught my foot on the hose as I was stepping forward.  It was one of those falls where you think you have caught yourself and you expect to be upright but you end up on the ground. I landed on my side and my rear – and on my non- nerve damaged side. Thankfully.  I had to make a nice turn to end up that way. I do think one of my guardian angels helped that move because I don’t know how I landed like that.

On the ground my first thoughts were “did I land on a chicken?” (I didn’t – they all ran far away – chickens!) and “ouch my ankle” and then “this is not going to sideline me”. NO No no!!  The next thought was me wondering if my cowboy neighbor who was out feeding his equines saw me fall. (Kevin was nearby but on a loud tractor mowing a field).  I did not want my cowboy neighbor to see me on the ground! It is bad enough that I need he and his wife’s help for all kinds of things (they are young and able!) but I didn’t want him to have to come ask if I needed help getting up off the ground- I would feel ancient.

So I took a deep breath- assessed the damage and hauled myself up off the ground.  My left ankle was tender. But I was ok…I was not in that much pain–lie lie- I was. But I went over to finish some things for the horses including some brushing all the while hoping they didn’t knock me over!  I just could not fathom that something was going to take me down for the count. But I knew I needed to assess the damage to my ankle – both ankles hurt but the left seemed to be getting worse by the minute. So I went into the gym part of our barn and I took off my boot. I could see where I twisted it. Not too swollen.  Good.

I had twisted this ankle before years ago leading a horse down a hill.  But this fall was worse- it hurt much more! I was a bit worried but I waited for Kevin to get off the tractor so he could take a look. He thought it was a sprain -but because it was getting more painful pretty fast we opted to go to the urgent care for an x-ray.  It didn’t take long and they were fairly certain I had no break – but gave me the films with instructions to see primary or ortho as needed – and they locked me into a boot that felt like a ski boot and off I went.

I will admit to moments of self pity and negativity.  I am just beginning to get back in shape and being able to do more things and I did not want this to slow the progress. And I was back needing someone to help me – poor Kevin has had enough.  But I decided not to make it bigger than it was. It is just a sprained ankle. It will take time to heal but maybe I can work around it some and keep moving some.

I got home and broke out of that boot and iced my ankle all night.  I woke up with pain the following day but it seemed less than the day before which surprised me but gave me some encouragement.  I still felt like I needed the boot because I did want to try do something constructive with my Saturday. We always have a list miles long of things that need to get done. I was in the middle of spray painting a wrought iron table I picked up for $50. I wanted to complete that project. So I put on the boot and Kevin covered it with a trash bag and I got painting.  I was able to stand just fine and after a while I became so involved in my work that I forgot I had a sprain (and nerve pain for that matter!).

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Spray Painting!

Today I woke with less ankle pain again. I am paying for the spray painting with some nerve pain in my arm and back but I expected that.  I still can’t move my ankle certain ways. I feel like the foot needs support.  I had taken a knee brace and somehow made a foot brace out of it and that was providing support. The boot seemed like overkill. Today I went to the drugstore and grabbed a couple ankle compression bandages and an ACE wrap. I will keep some form of protection and compression on for a while. I think this is going to heal sooner than later if I can keep from aggravating it. I can see how I will still be able to do most things. I just need to elevate it some each day.

Well it is funny how one minute I was so excited about picking up manure and the next I was flat on my butt with a sprained ankle.  That’s life . You just have to take your joy moments and appreciate them. I will be back picking up horse manure again soon enough.  I am grateful my PT is going well and  that I am doing things I haven’t done in so long. I have hope!

 

 

 

 

 

 

 

 

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!

 

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!)

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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?