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. 

Little voices 

Today I got one of those Facebook memory posts that showed a video I posted from seven years ago. I often love getting these little reminders of the past. But Sometimes they make me sad. 

Today’s memory was a video of Kevin playing with Riley our big red mixed breed dog that we lost about three years ago. Riley was a good dog. I still miss his sweetness. 

I didn’t actually open the video at first so there was no sound. Somehow you can watch videos on Facebook without having to open them but the sound is muted. I enjoyed watching Kevin toss the toy to Riley like in an old time silent movie. But then I decided to open it with the touch of my finger. In the background of the video was the littlest of sweet voices saying “mommy”.  In the video I ignored the little voice at first. There was conversations behind me in the video. Then another “mommy?” , I began paying slight attention to what I’m sure was the millionth “mommy” of the day. The video goes on -me filming Kevin and Riley. The little voice trying to get my attention. 

I’m mad at myself. Why didn’t I turn and film them? The me today wants to see that moment. I want to see those little kids in that random moment. Why didn’t I turn the camera around? 

Sometimes I wonder if I ever was totally present when my kids were little. I could be so restless and distracted back then.  I still get restless to this day and I always need distractions. 

I had terrible anxiety back then so it was often hard for me to be present in any moment. I was always fighting to feel calm. Having a camera in front of my face helped ease the anxiety – it created a barrier between me and the real world.

  I have worked from home for years too. I needed work to stay sane. But that was a distraction too. 

I don’t think ignoring the little voice in this video was a bad thing really.  It was just a moment in time and I probably loved that Kevin was outside tossing the toy to sweet Riley in our old small backyard. A rare moment alone with one of our dogs.  I just wish that I had turned around and filmed those little kids. I miss those kids. They liked me then. The teens that live here they don’t like me much of the time. Not a shock it’s part of the drama of s teenager. 

After I watched that video I cried. Life has just flown by. I do remember days when my kids we’re little where I deliberately took stock of certain moments. I recall  really dialing in and knowing this was a moment to be favored. But many of those memories have slipped away. That’s why I wished I could see the little voices in that video. 

Were those little kids so much better than the teens that have taken their place? No. My kids are really still wonderful – just more complicated. They are Not as sweet as that once were. But they are good kids. Hearing those voices takes me back to another time. 

I kind of feel like my kids morphed into young adults behind my back. One day they were the littles and the next day teens stood in their place. I still get the “mom” requests but now the requests aren’t to go play legos in the basement they are requests to go to parties and to go driving somewhere. Their requests come with much more interrogation from me than their past requests. And the worry grows. The less ability I have to influence their choices the more I worry. When they walk out that door it’s up to them. I have to give it to God. 

The video reminded me of the past and the present and all that has come and gone. It made me sad. I wanted to see that little boy asking the younger me a question -I wanted to hold that little hand again. I miss that little voice. 

But this is how it has to be. Life goes on.  I am letting go of my kids slowly and I’m hoping my kids can one day fly on their own.  

 You gotta try to keep a sense of humor when you are raising teens. They are an entity all their own. But sometimes there are the days that they will surprise me with a knock on the door of my room and there is a teen standing there requesting a sit down for a private conversation -I mostly listen feeling lucky to get a glimpse into what’s up in their life – they may even ask for an opinion. Those are special moments. 

I think the little voices in the video remind me that I need to be more present in my life now.  It isn’t easy. I have so much going on now.  We’ve become a three generation family. My mom moved in just after last thanksgiving.  It’s so busy now. And I’m still recovering from surgery. The days fly by. Where did they go? 

Be aware Anne. Be present. Take more videos of your people. Take some photos. The moments will come and go and then that day you have been waiting for and dreading too will come. The house will be empty. Will those memories be enough? 

They won’t be. As much as they drive me nuts I’ll miss my kids fiercely when they go. The photos and videos will bring tears and laughter I’m sure. 

All we really have is now. And now goes by so fast. Darn you Facebook memories that make us remember  those  little voices -those little  echoes of the past in a video –  Reminding us how precious each minute is. 

Tic tock. 

I gotta go – I need to be present somewhere else. 

Last summer

Only four years ago!

Rare moment of closeness with Luke. Look I’m touching his arm:)

It was the clothes that got me. 

The boxes of my dad’s things arrived today. I knew they were on the way because my brother told me so. But I wasn’t ready for them. 

There they stood in my family room. I didn’t want to open them -I didn’t feel ready but curiosity got the best of me.  They sat beckoning to me for about an hour before I gave in. My son cut open the boxes and we began to sort through. 

I thought there would be mostly photos and that was true. An album from when I was a little girl contained lots of photos I hadn’t seen in years. There are photos of old friends and family and events I hadnt thought of in years. There were pictures from my 8th grade graduation and my dads marriage to Jean my step-mother who passed away in 1994. I picked up a photo in a frame of my brother and my dad and I taken about 14 years ago in the backyard of my old house. Wasn’t that just last week? My dad looked so good. I never thought of him as old until I saw him last March. He was walking stiffly. His memory was pretty bad. Had that oldness been something that had been there that I didn’t see? 

Oh I miss him so much. My brain has such a hard time wrapping my mind around the fact that he is gone and not in Florida any more. His condo will be occupied by renters in a few weeks. 

There are so many pictures to go through. Pictures that bring back memories of good times and even bad ones. But mostly they represent the fast passage of time. My husband kevin was doing the same traversing time through his family pictures this week as the brothers readied there childhood home for sale. He said that looking at those photos really made him realize how fast life passes and that it’s time to get busy living. He knows I second and third that statement. 

I can get through the photos -but it will be a process. We will be sending them to a service that will copy them and then send them to us on a DVD and a thumb drive. Then my brother and I can decide which originals we’d each like to keep. 

After I opened the boxes today I realized that I wasn’t ready. Along with the photos were some clothing of my dads. My brother -who went through all the items in my dads condo with the help of family – told me he was sending some clothes along to see if my boys or kevin might want them. 

I wasn’t ready for the clothes but I didnt know it until I went to open a plastic bag containing a a couple green shirts. 

We had just begun looking through things and I picked that up and opened it. That’s when my heart fell. It became so real for me right then. Touching his clothes. A solid green rugby shirt with and Irish emblem at the breast. Along with it a green Villanova t-shirt. No doubt items my dad wore on Saint Pattys Day. Dad embraced his Irish heritage and would have proudly worn those shirts on March 17ths of many years past. I held the shirt and a wave of sadness washed over me. Then as a reflex I brought it to my face and smelled it. It smelled like my dad. It was clean but perhaps it was the smell of his condo or the shirts had sat in his closet near his cologne- or maybe I imagined it -but that was all it took for the dam to break. I began to cry. My mother    who hates when I’m upset began to cry and jumped up to hug me. Clothing was my Achilles heal. Clothing made it real. 

 I couldn’t touch the shirts again. I couldn’t put any other item of clothing near my body. I just shuffled the clothes around the box as I took inventory of the items the boxes contained. My son put the green shirts back as i composed myself. I could see it made him upset when I began to cry. 

I know I have to grieve but I don’t like getting others around me upset when I do so. I take my grieving self out on a walk or I cry in the shower. But today touching the clothes was just too close to touching my dad. Maybe because I couldn’t be with him when he was dying I was able to somehow pretend he was still alive in a way. 

 I ‘m very effected by smells. I have a chemical sensitivity now. I can smell stuff nobody else around me can. It drives my family nuts. But  I still stick my head in the dining room hutch that was my nanas. I painted it last year but not the inside. And when i open the door and sniff I still smell her apartment -and emotions and memories wash over me. They aren’t so raw today as they were in 1987 when she died. The smell gives me peace now. 

But today the green St Pattys day shirt got me. I want to keep that shirt. When I first saw it I immediately thought of myself wearing that shirt this March 17. But I’m not sure now. It’s going to have to stay in that plastic bag for a while. It’s just too raw. 

Funny what makes us feel such grief and emotions. I don’t know how my brother went through all that stuff. I’m glad he had help from his family. I imagine through the tears there were some laughs too. 

I still picture my brother as a young boy the son of a father who was so big to both of us. I picture that little soul going through all those things of my dads(how did he grow up so fast?) and I picture him looking at those green shirts and putting them in the box. That soul in grief -Sending me items that he couldn’t stand to give to charity. They wouldn’t mean anything to anyone that saw them on a Goodwill rack. 

But to me they mean everything.