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. 

Difficult things

This is a topic that is rather private  for me and very hard to talk about. I have not been one to share too much on family issues over the years. I do feel that by sharing some of my experience on this issue that perhaps it will help other families in this crisis. Or maybe at the least they won’t feel so alone. So here goes…

My neighbor – whom I’ve never met (we live in the country so houses are further apart)-  startled me the other day as I was about to grab some dog food out of the garage. I was harried and late for feeding time and bone tired from lost sleep. She said something as she stood in my driveway. “Pardon?” I asked. But I thought I knew exactly who it was and I was right.

“Are you Mrs. Sweeney?”. She asked again. “Yes” I answered.. “It was your son who….the other night”

I am going to save you the exact details of that event but my 18 year old son fueled by alcohol became a volatile and crazed the other night –  and he ran out of the house as I was calling the police and subsequently terrorized our neighbor. I feel so awful for what they went through. I am sure in his state he thought he was trying to get into our house but he can’t remember any of it. I know it was terrifying for this neighbor and what I heard I can never un-hear. You never want to know that your child is in such a terrible state of mind.

It turns out he was suicidal that night and I have found out since this episode that he has been this way for months and even tried to kill himself over spring break in our home and we never knew about it. A friend came to his aid and my son promised to tell us he was in a bad way the next day – he never did.

The severity of his issues at this time is a shock to my husband and me – his having depression/anxiety is not.  He has been treated for years for ADHD and Depression/anxiety.  The problems we ran into over the last few years were twofold- our son didn’t want to confide in anyone – he was a locked up safe – so therapy was futile though we did send him.  And secondly getting a Psychiatrist for a teen is not easy. We have a definite crisis in this country with the mental health system and it is even worse if your child is and adolescent.

This is really a country crisis not a family crisis. If families can’t get help for their mentally ill children we can have more mass shootings and suicides. I know the problem. There aren’t enough beds so if you have to have your kid seen in the ER and want him/her admitted it is almost impossible – even when the person is suicidal. If the patient stabilizes they release them. And if you are afraid for your own safety or other family members and you want your minor child not to come home then you can be criminally charged in some states or charged with abandonment in others if you leave him/her in the ER.  And if CPS get involved then life can become hell.

In my son’s case he should have been admitted but because he was drunk – a new issue since he began college- they waited for him to sober up. By the time we called in the AM and asked to speak to the mental health specialist in the ER he had already been put into an Uber and sent home- in fact he already had snuck back into the house.  And the fact he was 18 and an adult gave us really no say in anything anyway.

I was so angry with the system. I was angry with myself to? I had been trying to get him to tell me what was going on all semester as I saw his grades plummet and work not being handed in. He rarely would answer my texts or calls and when he did he was short with me. I thought it was motivation- he is brilliant – so I knew he was smart enough to understand the concepts. He just wasn’t doing the work. I am sure my lectures on motivation, asking for academic help,  and my frustration over the lack of drive was not helpful as he was overcome by the feelings he was having. I feel like I missed the mark and now we are here.

This kid has not been an easy one to raise. Our relationship has been ok at best and non-existent at the worst.  But regardless you never want to know your child is hurting in this way. And you never want to see their trajectory in a downward spiral. I knew my kid could lash out in anger at us.  He could be a handful at home but he never directed anger toward friends or in school. But I can see he was crying for help and he was getting his comfort from alcohol and binging to relieve his pain. And then he blew.

My children are adopted and that fact in itself make them have a much higher percentage for mental health issues and substance abuse issues. We talked openly about this in our family. I myself have anxiety and have fought a battle with that for years. We went to family counseling for years. For me there isn’t shame in mental illness but it is hard to talk about for many.  But when it came to my kids issues I only confided in a few people close to me. But we should be able to talk about this. Parents should not feel alone.

I was lucky because I found a support group for parents with adopted kids and it really saved my sanity. We weren’t alone anymore. I had a group that understood the specific issues of the adopted child. But I kept silent in my writing most of the time. There is so much parent shaming/mommy shaming out there. And if you haven’t raised adopted kids you really don’t know the issues. But mental health issues and addiction can effect all of us and that is why I share this. It is not easy for me. My heart breaks for my child that I have wanted to reach all these years but haven’t been able to. Who I have often not liked  but have loved and tried so hard to help in every way to succeed and to be happy. It is what we want for our children. But sometimes they have to want that for themselves more than we want it for them…hopefully now we are on the right path,

The good news is that for the most part my son has allowed us to help navigate him when it comes to his mental health care. But the bad news is that he has not been open about how severe his issues have gotten so he wasn’t getting the help he truly needed.

The depression and hopelessness he was feeling was the gasoline and alcohol has been the flame. Thankfully his friends were very forthcoming when they realized my son was in crisis last week.  When I reached out they told me of their worry for him and told me of things he had done or said that helped the mobile crisis team -that came to our home after the ER failed us – understand that my son needed intervention. I must thank these friends for caring so much for my son who they recognize as a troubled but loving and caring friend. I felt happy that he has made these friends -that wasn’t always easy for him. I hope they remain a support for him in the future.

I know that such swift help is not usually the case as I briefly discussed above.  But if not for the mobile crisis team I would not have known where to turn for the help that my son had agreed to. I would have probably taken him back to another hospital and sought to get him admitted. But the crisis team had other options.

How did I find this team – that came to our home less than two hours after we called them? The police officer that came to our home the night before – after they found our son and got him transported to the hospital- handed us a card and explained that this team might be of some help.  At the moment I didn’t picture our son coming home. I wanted him admitted and then after that I didn’t know. So I didn’t think we would use that card but I set in on the bookcase and sure enough the next day we used it.

I had given my son two options- we will take you to a homeless shelter or you can get help.  I said to him whatever he’d been doing up until now was not working and things were just getting much worse for him. He was lucky he didn’t get arrested or shot when he not only trespassed but terrorized our neighbor. What would be next for him if he didn’t get help? I waited for his answer- and he chose help. I thanked God.

Once that crisis team got there they asked many questions and my son was very honest and became very emotional during this time. I felt so bad for him but also maybe this was a small breakthrough to releasing the pain he has been living with. The team got him a place at a rehab- which at first I didn’t feel he needed but once we realized that he had alcohol issues we realized that a rehab would be the best place for him. They will work on the substance abuse and also the underlying issues he has been dealing with. He will see a therapist and a psychiatrist. He will attend group sessions on many subjects.

They got him in a good one…one that is based on music as a therapy- he loves music. He flew that night to another state and is now on this journey to recovery. We were very lucky that we got him help so fast.  I thank him for being so open to getting it. I know he was faced with an option but I can tell he knew the best option was to help himself by getting help.

This can be a new beginning for him. I don’t want to have expectations – this is his journey with many battles and there are many things he has to deal with before he knows what his next steps in his life will be.  I hope he can shed his demons or at least begin the process. It can be so freeing and maybe he will see many possibilities for his life.

This is not an easy share for me but I felt I needed to be open. I do want to stress – If you are suffering or have a child who is don’t be afraid to speak up. If you have had a hard time getting mental health help perhaps a mobile crisis unit might be of help. And if you are a friend of a person having trouble please report it to someone. You could save a life.