Hope

to loath or not to loath thyself?

I think I am surprised to find myself writing again. I really thought I would stop- I could not fathom sitting down to try. I thought over the last few months that- well it began before that really but came to a head over the winter – I had lost my way. I felt I was lost and was not sure of my purpose. I just felt stagnant and blocked. What little creative blood that was a trickle much of the time this last a couple years had become a drip drip drip. I know it is there as I feel it light up sometimes. Today I felt it when I received a notice of a local photo contest. And yesterday when some uncanny thing happened involving the IRS – maybe uncanny is the wrong word when using it with IRS – I heard the thought in my head- “you should write about this”. But as with so many of those same thoughts, with that spark that comes with those thoughts the light quickly flickers out.

This past couple years has been hard for me and my family. I guess I would venture to say since my cancer in 2013 things have been tough. There is nothing like a serious illness to change the dynamic of the family. I think I have been harboring a lot of guilt over my getting ill. I had no idea that my cancer treatments would lead to years of chronic pain and my just being unable to be the mom my teen kids probably needed. Sometimes I was someone I did not recognize. And this all during their neediest years. Forget toddlerhood – teens need us more than they ever let on.

I became an official empty nester in March 2020. Just as Covid began my youngest child went off to the Navy. That left me unmoored. I never thought I would be effected by my empty nest. I have my mother living with us, and we have lots to do around the farm. I have my job- even though it pays little. I have various hobbies (of course on hold in early covid). Anyway I was effected by his leaving. I know it was that he was going to the military and to bootcamp that made it worse. In bootcamp they can’t talk with you much if at all. You feel very disconnected and that is hard in a time when we can text our kids at any moment and hopefully hear back from them. As sure as I was that I would not have a life crisis I found myself crying – missing him, my two other kids, and something else… Could it be my identity?

I was shocked about this. And what followed has been months of my getting used to my kids being gone, the military owning one, the other two in various stages of finding themselves, and me doing some deep personal looking at myself. And up came so much guilt of every failing I had as a parent. And they keep stacking up! My daughter got pissed at me last winter. So pissed she didn’t want to talk to me. For like a couple months. This hurt. And also during that time a long friendship ended. That hurt too. There is nothing like the sting of rejection – especially by your kids-to get you to look into the mirror and try and see how things happened and if you can do better.

Learning how to parent young adults is an art. I will think that I am helping my kid- no I am overstepping. I think I say something constructive – no I hurt their feelings. And since they too are learning how to adult they themselves lack the expertise on how to communicate constructively. It is easier to just not answer the texts. Or to curtly say they need space. SPACE? If anyone should need space it should be ME – the mom! I get to say I need space before you do!

I went from anger to sheer sadness to anger and back during the time my daughter didn’t want to talk with me. I sent emails apologizing. And then I realized at some point this issue of my feeling so awful about her need for space was not about her need for space. It was somewhere inside me. The lost me. The me that feared rejection – this fear goes back to my childhood- dysfunctional family -blah blah- we all have some baggage! Just when you think you have dealt with your issues…and believe me I had spent years trying to deal with issues in many a therapists office- on a soft couch or chair -only to have these feelings of rejection pop-up when my young adult daughter got mad at me. Son of a gun.

Once I got down to the issue(s) I knew I needed to jump back into therapy. First working on how to be the parent an adult kid needs and also to look at these rejection feelings…this lost feeling…finding my purpose…maybe even what color my next vehicle should be…ok thats a joke. But here I am trying to figure out what this next chapter of my life will look at. Deal with the sadness over losing some years to illness and pain and to try to not live in fear… but most of all self loathing over the many many mistakes I have made in my life. For not being the “greatest mom ever”.

My therapist told me she has had no mother come in touting how great a mom they were. Most moms beat themselves up over their parenting at some point. And when your kids are young adults and out making their own choices and trying to become independent persons and inevitably making mistakes- (inhale Anne)-you want to help them to not fall down! And when they do it is so easy to blame ourselves for the fall. And when they tell you they want to figure it out on their own it hurts bc we know so much more than they do, right? So much more that we want to instill all our wisdom on them – and yet they would rather hear from an earthworm than from us…it hurts. Then you ask yourself what did I do wrong that they would rather take the advice from the earthworm over me?

And if you keep hanging on to all that stuff it will just drown you. Well it was drowning me anyway. I needed to get off the drama triangle- its a thing -I can come back to this in another post. I needed to step away. Let them live their lives. Let them fall and not feel blame.

I had a kid who two years ago had to go to a rehab for severe drinking issues. He went to Florida to a rehab and a half way house, then another rehab out-patient, and another half way, and during covid another rehab out-patient for depression. I felt terrible for him and for months I didn’t know how to navigate this world of addiction. I still don’t really. As we went along I did realize that I was enabling my son. Not to drink–no no. The drinking was a shock to me (I always thought I would know if my kids were drinking too much being a child of an alcoholic – turns out that is false). Turns out I was helping him too much in rehab and in his making his way in his half way. So I backed way off. We had to. He needed to figure out things for himself. But crap that was so hard for me. But it was a good thing we did it. I am happy to say he found an apartment this winter with a sober friend. Got it on their own. He is working in a steady job – and prayer after prayer -hopefully staying sober.

Just as these accomplishments are not my accomplishments neither was his drinking my fault. Why would I take credit for either?….but I would easily blame myself for my fails as a mom for his drinking. Logically I know it isn’t my fault but I beat myself up when I found out he had a problem.

The things I accomplish in therapy this time may be better for my kids as I learn to parent adult kids. But for me it will be granting myself forgiveness for real and perceived failures. I hope this will help me open up again creatively. But most importantly – maybe I won’t feel so lost and I can begin to navigate where I fit in. What I want for the next chapter. Anne 3.0 haha!

Acts of Kindness- my Virginia story

I found out today that a very special person who touched my life passed away. I had lost touch with her over the last couple years and I missed the announcement of her passing last September. I just saw it today- I don’t know how I missed it on her Facebook page. Her name was Virginia. She was 88. She was a vibrant and active lady up until a year or two ago when she fell and hurt herself and went into assisted living. Her daughter wrote that was very hard for her to go there and then Covid hit and that was very hard for her in her decline.

Her husband, love of her life, had passed a number of before we met. She often posted about him on Facebook – it was clear she missed him very much. I picture her with him now. She loved milkshakes – a particular orange one from McDonalds I think I recall. I picture her sipping one as she sits with her beloved on a bench in heaven.

Virginia and I met not by chance. It was an act of divine intervention- and that meeting made a huge difference when I was going through a very hard time.

Two days before we met I had just discovered that I had breast cancer. I was 49. I had three young teenagers. And a wonderful husband- who from the moment we got that news and sat shellshocked on our bedroom floor as I was babbling and crying all at once- was nothing but a firm rock for me to hang on to. I had so much to live for and I was so scared. I didn’t know how to face this thing. I sunk into quite a pit of despair.

On the Sunday after that diagnosis I felt I needed to go to church to pray. I could not face the service that was going on so I went into the chapel. I wept and I prayed for help…I prayed that God put the people in my path that could help me out of despair. Many things happened as a result of this and as I recall them now I am still shocked at how the Divine listens.

After I was done praying in the chapel I felt like I could slip into the service if we went into the upper loft. As we made our way into the loft area above the crowds I heard my name called over the loud speaker. That was random I thought – how odd that I walked in as my name was being mentioned. Well maybe not so random. When I heard my name, I looked up and I saw many faces looking up towards our seats (we sat in the loft most Sunday’s- people get to know your seat patterns!)they were in the midst of prayer requests- someone had put one in for me. I still to this day don’t know who it was and it was so kind. I had posted of my diagnosis on Facebook just before we left for church that day. I really didn’t want to post anything but in my despair I honestly felt like I was being compelled to do so. I am sure the prayer request came from a friend in church who saw my post. And the Facebook posting led to so many other amazing connections that ended up helping me so much in such a bad time.

We stayed to the end of the service and we were walking to the exit of the building I saw a very tall, well dressed older woman coming in. We had never met but I had seen her in the church building before. I looked at her just to nod and say a friendly hello but she stopped and said “are you Anne Sweeney?”. I was taken aback she knew me by name and I said “yes” and she then introduced herself as Virginia N. I knew her name as she was a long time member of the church and her name came up often. She was a very well loved and admired person. I could tell that from the way people spoke about her. I was glad to be meeting her but I was in no mental shape to chat.

She began to compliment me on my writing. At the time I was writing a column for the church newsletter. I was very appreciative of her words. I had only recently put my words out into the world and I was always unsure if I was doing a decent job. Later I would find out she had been a media specialist for 41 years in the county school system and so that compliment was even more special!

I thanked her for her kind words and told her I might be taking some time off on my column as I had just been diagnosed with breast cancer. She just looked straight into my eyes and said she had fought breast cancer 7 years before (I think that was the number of years). I can’t remember all the words she said after that because I was in such a bad place. But I do remember not feeling so alone and connection was made. As we ended the conversation she asked if she could give me a hug. I thought that sounded like a nice thing – so we hugged. What a sweet and kind a comforting thing to do for someone you just met. That meeting was no accident!

I left the church feeling like maybe there was a way back to the light. Back to the fight I was going to face.

Virginia and I became Facebook friends and we would message each other and she would check in on me as I went through my surgery and recovery. When I was going to be facing radiation she left me a message to go to the church office where she regularly volunteered and pick up something she left for me. I was so surprised to see a basket that contained lots of wrapped goodies each numbered up to 35- the number of days of radiation. The card on front said ‘Life doesn’t have to be perfect to be wonderful…” and a note said I was to open one per day after each treatment. What a special thing to do for someone.

Gifts from Virginia

The gifts were sweet and simple. A comb, a magazine, a gift card, something to eat. Each day I was so happy to be able to look forward to opening one of those gifts. It lifted me during a very hard time. It let me know someone out there loved me…she didn’t know me well…but she loved her neighbor enough to just want to make a difference in their very hard day. The love is what you feel in the gift. The contents are secondary to the love. That love is what we can pass on- and pay forward.

I completed my cancer treatments and my life went on. Virginia would keep in touch with me. Messaging me asking about my kids and husband. She kept in touch when I was dealing with more surgeries for chronic pain I developed from the cancer treatments.. She always had an encouraging word for me.

By then I wasn’t attending church. My pain issues were just too severe. And I must confess to not having been a church goer these last last few years even as my pain has been dialed back from surgeries. That is something I struggling with still- not my faith but with religion- but that is for another post. So because of this I didn’t see Virginia – I only connected with her via Facebook. We messaged less and less- and I knew she was having a hard time with pain herself. I knew something happened to her and she went to assisted living to rehab and I guess she never got back to her beloved home. But she went home to be with her God who she loved so and was so faithful to – and to be with her husband and the many friends who went before her.

My heart is heavy- she passed in September but I only just found out so for me it just happened today . Virginia was a very special lady. Those who knew her- and there are many- will tell you many stories about her. She had quick wit and a great kindness. She was strong. And she reached out to help a lady she didn’t know – God had our paths cross that day- we could have just nodded to each other and exchanged a pleasant hello as I walked out of the church. And had I left the chapel and not spent the last few minutes in the church service we may have never met. But I am so very glad we did meet.

My writing -which I have struggled with in this last year or two -was a catalyst to our connecting. How she knew my face I will never know. But I am glad we spoke that day. I will never forget her kindness to me and I hope I have paid it forward – I have tried – and will continue to- though I don’t think I will ever be quite as good at it as Miss Virginia was. I wish her a peaceful rest and I thank her for the gift of love and hope she gave me during one of the biggest challenges in my life. I will never forget you Virginia.

I wish for everyone to have Virginia story.

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!

____

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. 

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

Faces on Paper 

The thing about feelings are they ebb and flow like the tides. One moment I’m ok. Having a good day. Doing fun things. The next I’m just something else. 

I wrote the post below in one sitting. After the purge I felt better went out had a great day with my family. We are down on the shore at our new cottage. I Sat on the calm bay during an eclipse that was anti-climatic here on our longitude and latitude but the serenity in the bay was medicinal as always. 

I’m trying to piece my way through these shift that I am experiencing. During the “normal” times where things feel more I balance I wonder if I am being over sensitive to the feelings I’m having.  But that’s the point my senses feel what they feel when they feel it. Body and soul. We have to honor what we are feeling. It’s so easy to push it away. I want to. But I’m also aware that this is a season of change and I will have to navigate it and face it   .  

So below is what I wrote two days ago and there has been an ebb and a flow again and again.  At some point maybe I will feel on a more even keel again. It been a long four years.

……

I sat crying in the shower -it’s a good place to cry. Hopefully nobody hears you. 

My sense of a numbness and a loneliness began about four weeks ago. It had be creeping up before that but it reared its ugly head in mid-July. A sense I wasn’t living my life, like I am living outside it it sometimes – a sense things have changed. I felt everything  is off kilter. Would it right itself? Will it? 

In the shower I felt the need to write. My words always form in the shower. Then I have to jump out dripping wet and run to type it all out. My words are never as eloquent as they are in the shower. The shower breaks me open sometimes. A cleaning of the body and opening up the soul. 

I think I am having a battle of body and soul. My body is trying to push my feelings down and my soul which usually wins is trying to push them up. The soul is protective and honest at the same time. 

I have experienced huge losses in the last two years. My father-in-law, then my dad -which was very sudden- and four weeks ago my mother-in-law. Add in the four years of dealing with the aftermaths of cancer and two major surgeries for that aftermath in six months and more to come and three teens that keep being -well , teens – my mom moving in – I guess I shouldn’t be surprised I feel the way I do.

I stood in the shower and drew a big heart on the wall and put my hand in it as I cried. Maybe I wanted to feel something familiar as I touched that wet or maybe I wanted it to heat up as a sign from someone who I loved that has crossed into the realm. I just wanted to feel something. And I felt sad so maybe that was ok. 

 I wanted something bc so many things seem shifted. 

Am I depressed? Shell shocked? Is it the meds I have to take?  Or am I just feeling the pangs of so much grief that I am holding in? 

My mother-in- law -Doris Sweeney- whom I called mom was one of my very best friends. She died July 18. She deserves a blog of her own and I will write about her when I can. I’m not ready but  I do miss her terribly. Sometimes I think maybe it’s wrong for me to grieve this loss so much bc this wasn’t my mom this was Kevin’s mom. Doesn’t he deserve to have this huge chasm of loss to himself? I feel like I am stealing his mom or the loss of her somehow. I know that’s not rational. But bc I must feel that way somewhere deep in my brain -my body is like a dam only letting bits of grief sink in. 

I think this and the fact that three people that I considered parents to me – even if two weren’t – have left this world. And crap do I miss them. 

My soul will win and require me to feel what I need to feel. It’s pushing me to deal with it all. I hope that it will get me off this rocking boat and help me to feel like I’m on dry sound land again. 

It’s lonely here. I have felt this loneliness before many years ago before I married Kevin. The alone feeling even when in a room of people. 

Kevin and his family brought so much light and balance  into my life. They have no idea. 

The other day at the memorial lunch I think I hoped it would feel like a reunion of family. That i would feel that warm feeling – like the room gets a bit warmer bc people love eachother and are happy to be together. But I just felt lonely. Nobody did anything wrong. It’s just that each of us was so sad and the part of our soul that touches each other was curled up hugging our own selves – protecting us. Or maybe it was just my soul was curled up and I couldn’t reach out. But everything was off. Sadness prevailed and was visible under the laughter and greeting of friends. Because the humans whose lives we were celebrating should have been there. 

It was a beautiful place and so many words of love were shared.  The gathering of friends was beautiful and I wanted to see my inlaws faces but all I had to look at were the many family photos we shared in collages that we all put together. 

Faces on paper were all that was left. 

I know I looked at the collages but I hardly recall any of the pictures. I even made three of the collages myself. Pinning the photos onto the framed boards one by one. I cried some. But I stealed away the feelings as best I could because other wise I couldn’t have done it. 

Faces on paper. And love and memories. I know this. But I’m not there yet. I know this is what life should be. Parents going before their children. 

Rationally I get all that. But I’m not there yet.  I’m off kilter, I feel this hole, too much has happened. 

I will begin counseling again but right now it seems too exhausting to tell someone everything that has happened.  Maybe I should give the therapist this blog post:) 

I just need a little time to see how this all processes. Writing helps. It does. It’s something that is familiar and balances me. Thank God for it. 

And God. I have written many times about my faith. I would admit  my faith has been tested sometimes in the last year especially. But in the last four I have had so many questions and some have been answered as best as they can be answered and others still flutter waiting for understanding that I might not get. But I think sitting in a church of any sort could help bc I feel a connection to God – but definitely not to a religion. I like bits and pieces of many but dislike bits and pieces too. But sometimes just sitting in a church worshipping and singing can help the soul heal. 

I sat on my horse yesterday. I longed for it. Needed it. For those few moments working with my horse some balance was in my life and that post horse buzz haloed around me for a good while.  But today that sense of unbalance of doing life but it really being part of it is back. 

I’m going out to paint some shutters for our cottage I’m hoping brush to wood will lighten this load o me at least for a while. 

There is a path that I must walk to get to a place of balance even if it is a new familiarity of my life. It’s changed the patriarchy and matriarchy that was once there is now mostly gone. What a gaping hole -albeit wound – it leaves. 

Lonely souls that have to learn to ride the rivers without a beacon ship. 

So much has happened my body and soul are trying to protect me I guess. Trying to keep the dam from breaking. In the meantime I’m floating down the river without a beacon ship  to lead me. Because now I -we- kevin and I and all my sweeney family -we- we are the new beacons  and I’m not ready to lead quite yet. 


Meet Daisy (and duke)

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

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

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

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

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

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

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

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

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

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

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

I laughed and rode around and around. 

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

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

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

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

Yet. 

But they will be. It’s a goal. 

But for now there is the freedom of riding Daisy. 

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


Duke

Doing the Mundane

You never appreciate doing boring laborious chores more than when you have been unable to do them for so long. For me my weekend was filled with fun everyday boring stuff and I’m so glad I was able to participate. I still had some pain but often forgot about it as I kept busy. I’m sore as heck even two days later. My muscles are still getting stronger after being laid up for so long. But I’m feeling good and I’m happy.

So let me bore you with my mundane weekend. For me it was not a bore. It was bliss. 

There was Friday night dinner out -with my mom and my hubby as my dates. 


On Saturday there was a little butterfly watching as we began to spread sand over the dirt and stone of our chicken enclosure. 


We worked. The boys shoveled over four yards of sand and since I still can’t shovel  (maybe I’ll be able to rake again someday!) I moved sand along with my feet and that proved to be a great workout. 

We had time for a little communing with the animals. 


And fixing a Rooster with bumblefoot. 

And I have to share Kevin with his new gas powered power washer. He loves it. 

And we did  a large amount of gardening. We created a lovely area. 



My work posse didn’t want their photo taken but I bribed them with ice cream. It pays to have an awesome ice cream shop minutes from our house! I am So very thankful that my two sons worked so hard all weekend with me and even did shifts at their “real” jobs.  

(Look how tall they have gotten!) 

And of course we communed some more. 


We sanded and gardened our way through the weekend. I spent it with two usually surly sixteen year olds but somehow they were gracious and hard working. Maybe they also got the brevity of the moment. I was doing normal things again. Maybe they didn’t get it. But I sure did -and as I worked I kept marveling at what a blessing it was to put my hands in dirt again and work with the animals.  This is a part of me I’ve missed -being able to do work -I couldn’t shovel at all or lift much-but I did use the hand trowel and planted some plants.  Yes I did a lot of pointing and telling people where I wanted stuff but I spread sand with my feet and tended to a hurt chicken. I groomed my horses and I sat and enjoyed being with them. There is much I can’t do still -but there is much I can do and thats the gift. And for that I’m so grateful. 

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. 

The day after..life goes on. 

I woke up today not knowing the results of the election and Kevin had to give me the news. I begged him not to but he felt I better hear it from him than on social media. He knows I’ve been through a lot lately. 

This is certainly not how I thought the election would go. I didn’t vote. I firmly felt I could not vote when so much hate was being spewed around this election. And in the end my state went blue. That was expected 

But this election outcome is not the outcome I expected. 

And I will say neither candidate floated my boat but one worried me much more and he won.  But lets see – looking at my life the last three years and all that’s happened just in my own personal space – I shouldn’t be shocked. If something I think should be right side up turns upside down it shouldn’t shock me anymore. But this election outcome kind of does. 

Well what do I do with this? 

Live.  I’ll live.  

And yes I’ll allow myself to think of the fastest way across the boarder if things get really crazy. I will try to will myself not to worry over the stock markets and housing markets as they react to this news. 

People wanted change – I guess – and they got it. And I’ll hope that the ranting Trump realizes as he awoke today (if he slept) what a freaking important job he just got. Maybe he can put the ego aside some( I would have said this about Clinton too) and keep his hands to himself (I would not have said this about mrs C -but well yes I would said this about her hubby) and get down to doing a great job of being President. Maybe dial the personality back some  (Some people would insert -the crazy -here but I won’t.) and remember the entire world is watching -the places we like and the ones we don’t. He needs to know that he now represents more than himself. He represents us. He needs to keep his head about him and learn to think before he acts. 

I want to stay away from social media today but I’m sure I won’t.  Kevin told me people have posted all kinds of things. “Racism won” was one thing he told me before I asked him to not tell me that stuff right at that moment BC I hadn’t even had breakfast. Because I’m not even going to engage in any of that. Why feed into it the frenzy -it will die down.  I hope. 

I have my worries. I would’ve said this about Clinton too. Its just that my set of worries for Trump are little more scary than my worries were for Clinton . 

And I am bummed we didn’t get our first woman President -but we will. The fact that Hilary Clinton was possibly going to be the first woman prez and it wasn’t part of the in your face marketing campaign during the election says to me that we don’t think it’s a big deal anymore we just expect it to be something that will happen. Just like now we will never be shocked if a person of color runs and wins. Our younger generation has high expectations for woman –they don’t seem to see boundaries where other generations of woman did- and I hope in this next election in four years that we will see more woman seek the nomination.  

I chatted  with a friend on the phone this morning and she was not a Trump supporter and when I saw her name pop up on my phone  I thought she was calling to lament about it -we never really have talked politics -we have been friends for almost 50 years our connection transcends that of politics – but I thought she must be calling to lament bc I assumed she must be so upset. But she didn’t jump into that topic until well into the conversation when I mentioned it and she just said “ugh”.  She had other things of concern to chat with me about – she had already gotten on with her life. 

So there’s no point for me to lament or get upset about the gloating or feed into the negativity that I’m sure to see on social media.  I have so many other fish to fry. (Now I’m hungry for fish and chips).  I just need to live my life.  

That not to say the Presidency isn’t a big deal. It is-but all I can do is pray that Trump will cool his jets some and listen to his advisors who I also hope are really really really good. Maybe he will put his daughter Ivanka in some position. She carries so much class I can hardly believe she his kid. And BC she is, I hope that maybe he has a better side than we have seen. And I am praying that this is the side that will be brought out when he realizes that this is for real -that he’s the freaking President of the United States. He needs to act Presidential. He needs to make decisions for all of us not just the choices he likes at the moment. And I certainly will pray that he leads from place of care and love and not a place of hate. (And I would also have said the same if Clinton had won. )

I realized after chatting with my friend that the sun doesn’t rise and set focusing on this one thing. In a few days this news will be old news. If anything we Americans have short attention spans. And we have lives to live. We have so many shows to binge watch. 

I’m praying for a lot of good things to come out of this very hateful election. Maybe that’s crazy but that what I do. 

 But ultimately I’m going to just go live my life. And I’ll definitely keep my sense of humor because I’ve found that it comes in handy when under duress. And I’ve still got my eyes on the fastest way to the borders – the ones without the potential walls -and I’ll make sure one of the big cars has a full gas tank at all times. 

Life goes on.