Navy Son- Part 2- How we got here…

My son has been at the Navy training center for about a week now.  He is in quarantine as is the protocol at the moment for new recruits.  We did get word yesterday that a recruit in training tested positive for Covid-19 and had been placed in isolation.  I can’t imagine getting that call as a parent – but it is a reality we have to consider.  The Navy is making changes daily to it’s normal procedures and it can be frustrating but it is understandable that they are dealing with something never conceived of (a world crisis of this magnitude) and they are trying to adjust as best as they can.

As a parent of a Seaman Recruit  (SR) it is not easy when there is so much in flux and all I can do is remind myself that my kid is in good and capable hands. They will care for him if gets ill, they are caring for him now.  Over time I have come to an acceptance of my son’s decision to join the Navy- it didn’t happen overnight. But I have gotten there.

When my son first said he wanted to join the Navy he was a senior in high school that was in 2018.  I was not a fan. Kevin and I both encouraged him to apply to college and maybe do ROTC or apply to the Navy after he graduated.  I think at the time I thought it was an idea that came with not much thought or it was a fantasy of an immature kid. Like when he was little and wanted to be superman. Though he did wear out two pair of superman sneakers over the years! But still I felt that he wasn’t mature enough to make a decision as big as joining  the military.  He also mentioned  that he wanted to be a police officer- which again we suggested he wait on. I think in our parent point of view we thought getting a college degree would be best. 

He did a year in a university  – and never pursued ROTC- but then at the end of his freshman year decided to change to a major (criminal justice) they didn’t have at the university he was attending so he withdrew from there and decided to live at home with us and he began local community college last fall. 

I could tell he was not thrilled going to those classes. And I could tell by the amount of gaming he did that he wasn’t studying. His heart was not into it. I was beginning to realize it was a waste of money if he didn’t have a desire to be in college. That’s when during yet another discussion about drive and motivation and his future he brought up the Navy again. And again I admit I wasn’t a fan. He wondered out loud why I was so against  him joining the military since my stepfather was a career Navy pilot and made it to captain. My son had heard some stories about my stepfathers career – teaching young Navy pilots to fly on and off the carriers at night, fought in two wars.  To me that didn’t extrapolate into my kid enlisting. I wasn’t a Navy kid or considered myself part of a Navy family.  My mom married into one when I was a young adult. So I didn’t feel a pull to have my kids join. Do not get me wrong. I was thankful for my stepfathers service andI am so thankful for all military service men and women. I just wasn’t sure I wanted MY kid to be part of the military. I was scared. And I still am. 

I told him that if he wanted to join the Navy he needed to do all the work himself – because normally he needed my help to figure most things out for him, jobs, banking , school admin issues etc.   I decided that if he was really serious about the Navy he had to do it on his own. I was not going to facilitate it. If he went and hated it later  he only had himself to blame. And I figured since I left it up to him he would not do anything about it.

I was wrong. Within a day he had a meeting with the local recruiter in nearby Frederick, MD. And that morphed into more meetings and once he was told he was eligible he went to officially sign-up. I have to admit I was not a fan still. My anxiety about it ramped up. But since he seemed so excited- and he rarely gets excited by much – I wanted to be excited for him. We looked over the jobs he could choose from based on his testing scores. 

He chose cryptology- but then when he went to our local MEPS (the place where you they do recruit processing) the job wasn’t available. Kind of a bait and switch? But I realized later he could have waited for that job to come open but he wanted to leave sooner than later…so he chose a job in a Sub. Missile tech to be exact. Holy cow this freaked me out because  just the week before he said he didn’t want subs and I was happy with that. Then he picked subs!  He told my husband he did exactly the opposite of what he had said he wasn’t going to do. But he had had options and he could have waited. So I guess this is something he wanted to do. Or he thought he did. Or he was being a teen.  I really lost my cool when I found out he chose subs- first I was mad …then I sobbed- I am sure this was me letting out all the anxiety I had been having over his decision to go to the Navy- I will say I was going through some seasonal effective depression when this all occurred so I think my reaction was more dramatic because of this. But a Sub- 800 ft underwater….why?

I could not speak to him for like two days. I hated myself for this. I read up on subs and saw he could be under the ocean for ten weeks…with no contact. I felt claustrophobic for him. A projection onto him of my issues of enclosed spaces. But I also began reading about subs. I do tend to research things – probably more than my child did.  I am sure I do this as a way to come to terms with things. The more knowledge the better I am able to process things.

In my research I read about some of the scary tests they have to perform in sub school (where he will go after he passes bootcamp).  My kid doesn’t swim well ( I am told they will teach him to be a better swimmer in bootcamp) and they have a test where four of them have to go through a sub hatch in a simulation of a sub escape. They wear air filled plastic bags (I am sure it is more technical than this) over their heads and float to the surface. They have a room flood while they fix equipment, they have fire simulation. Oh Lord!  But the more I read the more I saw that the testing is obviously important  and they want them to pass so they help them to get there. And if there are issue like severe claustrophobia then they will help them move to another job not in a sub.  But most important I read about the camaraderie that builds among the soldiers in subs and on ships, and the sense of pride these seamen have for their Navy, and their country, and themselves. He needed this. 

My son needed a direction, he needed to find something that could build his confidence, and he needs friends.  If he feels that this is the vehicle to him finding himself who cares if it comes before , after or instead of college -and there are many benefits to being in the military as far as schooling goes.  It has taken time for me to wrap my mind around all this. The positives and the negatives, the risks and rewards.  It was never a case of me letting him join the military. If this is what he truly wanted then I wasn’t going to stand in his way. But I know he wanted and needed my approval. He wanted to know I was proud of him.  I have settled into the fact that my kid wants this and he needs it.  I am very proud of him and I have told him that many times.  But it doesn’t mean I am not scared too.  It is very hard not to be during this pandemic. 

My son once told me he rather live a shorter life helping others than a longer life not doing so. That is sobering coming from such a young person.  It may have been a thought of an immature young man not realizing his mortality but it was one of the most authentic and honest things he has ever said to me.  It makes me sad too- because of course I want him to have long beautiful life so his discussing his mortality at all is not easy. But I believe he feels a call to service of others. And if that calling was to join the Navy than I now call myself a proud mom of a Navy recruit. And will try to navigate my own fears as I root him on  -and – I let him go on his life’s journey.

I just miss him.

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. 

Sometimes things work out…

All I can say is we just never know where we are going to end up. We have no real control over anything. All we can do is make plans and have hope that things will be okay. For  the last two years  the one thing I had wanted so much to do was to ride my horse again. It wasn’t  a lofty goal really but one that seemed to be unattainable to me not long ago. I didn’t want to give up the hope that one day I would ride again…..but for a while it was iffy…

Two years ago I thought I would never be able to do many activities again let alone ride a horse. My only goal then was trying to find someone to fix the pain I was in. That was a battle unto itself but I did not want to give up- because to do so left me in a very dire situation. One that I could not accept.

June 2016 was a start of an intense pain drama that was caused by breast cancer treatments. The pain had been an issue since my surgery in October of 2013. I had sought help for it with no luck and then it really  reared its ugly head in May 2016 leaving me bedridden for much of the next year. It was hell trying to find the a doctor who would listen to me and not send me away with a shake of the head. They either had no idea what was wrong with me or they thought I was nuts. But finally I found a surgeon who listened.

Today, three surgeries later. I am not that woman stuck all day and night in bed anymore- but I still live in chronic pain. But the levels I am managing- and there may be more surgery in my future. I am left with a disabled arm that I cant use fully and overuse causes pain. Sometimes I don’t know what that overuse is. But I just try to dance with it- sometimes I am in the lead and sometimes the pain is.

I have been hell bent on doing more living- I have always been a physically active person and I missed the mental boost such activity gave me. So many things I could not do. Some because of the limits of my arm and some activities were contra-indicated by my surgeon- one being horse back riding. It was a total bummer to hear this but I temporarily shelved that disappointment and sought another activity .  I bought a kayak with pedals so I could go out in the bay near our beach house. The feeling of independence being on the water propelling myself was intense and important in my recovery. I bought a bike. I began to walk more. I can do limited exercises in the gym.  But I was really missing the one activity I was told not to do—ride my horse.

In the summer of 2017 I was still in enough pain that I was not sure I could ride and on enough drugs I was not sure I should ride. But one day that summer  on a whim Kevin and I tacked up my horse Harley . He accepted the saddle and bridle so well  that I decided to get on and have Kevin lead me around the dry lot. I knew the surgeon had not been keen on my riding but I wanted to be in the saddle. It was just a pony ride but it was the kick I needed – I set a firm goal – I would  ride my horse again. But there were still obstacles to overcome.

I didn’t think it would take another year before I was able to ride again. I had another surgery in November of 2017 to hopefully further reduce my pain. I would say the result have been pretty good. I am off opiates but still need nerve pain medications. . I have pain flares more often than I would like. But I am doing more. The surgery itself – which was fat grafting -had a longer than expected recovery time.

Every time I went to see my nerve surgeon – Dr. Williams- I would tell him that I wanted to ride my horse.  HIs concern was that my arm would be yanked forward if the horse pulled the reins forward suddenly- and this does happen. This can cause more damage to my arm. Also there is the risk of falling off but I think in my case the real concern was with the yanking of my arm. So I wanted to rectify that. How to keep that from happening. There had to be a way . Maybe I would ride one armed. I began to look into that as an option.

Then sometime this past spring my farrier came. I was telling her my plan to try ride again. I explained my concerns of riding with two arms and one getting yanked and I was also becoming nervous about not being strong enough to ride using only one arm (my horse is also neck reined) if my horse pulled suddenly. She told me to get a Daisy Rein. I had no idea what they were but it turns out they are used often for young riders. The rein hooks onto the saddle and also to the bridle and that keep the horse from pulling his head down. Maybe it would work for this old rider!

I saw my surgeon again in July and explained how much I wanted to ride and told him about the rein. He never did give me his blessing but he told me if I did ride I needed to send him photos after I was safely off.  So that to me was an ok to go ahead.

My plan was to move slowly into riding my horse Harley beginning in early August- but life threw us a loop as we suddenly  lost Harleys companion a- our beloved Arab mare -Airy to colic. It was a tough loss on all of us and I again shelved trying to ride. This time more for Harley than for me. I knew it was a stressful time for a horse when there are changes like that adding me riding him after such a long time off might add to the stress – and we wanted another companion for Harley so the focus shifted on that. It took some time but we now have Hank and Yukon here. Hank belongs to our neighbor and Yukon is our Guardian horse form a local rescue.

One  day a few weeks ago  I went out to the barn to feed the horses and our neighbor was bringing Hank back from a ride. I began to feel that envy. That yearning to ride my horse. I really felt it was now or never so I began to get Harley tacked up. It is a bit of a chore for me to get it on while trying to limit the use of my arm but I was able to do it with Kevins help.

Before long I told Kevin I wanted another pony ride. I have to use a step to mount now to get on- it allows me to not use my arm too much.  I got up and settled – feet in stirrups and I was holding both reins because we put the daisy rein on to give that a try too. He tolerated it well and best of all it worked! He couldn’t pull very far so no yanking of my arm.  After a bit, I asked Kevin to let me go and and I took a deep breathe in and let it out and off I went.  I maneuvered Harley around the dry lot for a while..at a walk.. nothing fast. He did very well – and we then called it a day. Best to end on a good note when working with a horse. And I was not ready to ride in the fields yet. But it didn’t take much time for me to be ready! So much for slow starts.

Since that day I have ridden twice out in the fields. The last time – this past Saturday- I was able to tack up on my own. I have learned to yank the saddle out of my locker with one arm and I can toss it up on his back with one arm too.  It was very freeing to be able to do this on my own.

I also can ride with one arm so I switch from using two hands on the reins to one. It turns out my arms are in a “safe” position so I don’t think I will get a pain flare if I am careful – but again it is that dance i mentioned above. That day I was in the lead. Dismounting is a bit of a challenge. I now lower the stirrup iron and dismount on the  right which is the opposite side we proper English riders are taught to do.

Obstacles aside I can’t begin to explain the mental effect being able to ride again gives me. It is something I have needed. It didn’t feel like it had been two years since I had ridden solo. It was as if no time went by at all. I felt right at home in the saddle. I am so lucky to have the horse that I have. Some horses may have been too much for me after not being ridden for so long. Harley is a true champ. We have a bond.

My goal is to ride twice a week for now. I will have to be flexible on this as well as I live my life around things we have planned – social visits, traveling, and doctors visits. So I often curb any physical exercise for a couple days prior to doing these things because I don’t want to have a flare up of pain which may require me to cancel the plans.

But that is life as I live it now. I accept it. You just never know where you will end up…right now for me I ended up back in the saddle. How lucky I am….

….And Dr Williams has been sent a photo..with more to come…

When the kids left…

Kevin and Zach in front of his dorm on move-in day.

When the kids left for other places…boys to college..daughter to Ohio…I thought I would be fine. I didn’t think I would have tears or that empty nest feeling. I was sooooooo wanting the boys out of the house. I cannot lie. I was so done with the mess, the not helping with chores, the living like mole people only emerging for food and then taking food that was earmarked for others in the house. Be gone – be gone!

I will be honest I was not prepared to parent teens. It was harder than I thought it was going to be. Maybe because of the health issues I encountered just as they were entering their teens. One thing parenting will do is teach you a lot about yourself. Many times I felt like i was in over my head. I think we realize as parents that we really don’t know what we are doing. At least thats how I felt much of the time. With three very special kids who were adopted perhaps we did have some more challenges than some and I am very sure less than others. As my teens approached teendom (new word) I realized I wasn’t the cool mom I hoped I would be. But I was always championing for their success. I may not have been their best friend and perhaps sometimes I was their worst enemy but I never stopped trying my best help them succeed.

Motherhood will bring out the very best in us and sometimes the very worst. Over the years I was challenged with learning how to best deal with kids who had their own challenges. I didn’t always like how I behaved and I feel now like I was in a never-ending cycle of trying to improve who I was. I never really got where I wanted to be but I am always a work in progress.  And I loved my kids so much- I wanted to help them as best as I could. Thank God they have the dad they do as we balance each other out well and he picked up the pieces when I wasn’t able to.

I had my health challenges that basically covered  the span of my kids high school years and that effected all of us.  I didn’t want that to happen but it did. I often missed events and I didn’t feel well enough to become too involved in my kids school. I spent over six months mostly in bed. That is hard on your kids – and my were teens by then and not really able to process it all.

Where did the time go?  I was dealing with so much and I feel like I never got anything quite right. I sort of feel I got ripped off. What would it have been like had I not been sick? I will never know and maybe thats some of what I am feeling now. Sadness over what I wanted the years to be and what they really were.

And I miss the kids. As we dropped off kid 1 last week then kid 2 the next day I had this growing heavy feeling in my heart. Why I thought I would not feel this is beyond me. I guess it is because i prided myself on always having my own interests separate from being a mom.. I figured that these interests would still be part of me when the kids left home so I would not be sad because I had my own life. I am realizing this other stuff doesn’t protect your heart from the sadness of this new transition of your kids beginning to navigate on their own and you feeling that loss.

We aren’t a perfect family. We laughed, we cried and we yelled. But this is my family—warts and all  ..and now its changed. I will adjust.

But for now I am in transition. And I am a little lost.

I don’t hear from the boys much so far from college- and I laugh at myself for feeling sad about that bc we hardly ever had real communication when they lived here like moles. But the thing is they were here. And now its empty – and darn it – I have that dreaded empty nest sadness.

Kevin and I have things planned and intend on enjoying our new freedom- and I am excited about that. Thats one good part about the kids leaving. This empty sad feeling is just another part of it. And sadly I have to go through it.

So one in Ohio, two in college – my family has spread it’s wings. I know how blessed I am to have these transitions.

Pretty soon we will have the boys rooms cleaned up, their bathroom neater, and I will learn to cook for three (kevin, mom, and myself)instead of 8 (teen boys eat ALOT.). Soon we will fall into a routine and things will feel normal again. For now I am a little off kilter. My tears are a closer to the surface.

It’s all part of life…and I’ll be ok….

Learning Acceptance

I think I have been taking a sabbatical from writing. It hadn’t been my intent but it seems it just occurred.

I think I felt blocked in a way. I have had a lot of writing ideas so that wasn’t it. I had personal things that I needed to process and until I processed them -maybe not fully but processed them enough – I felt like maybe my writing would not feel authentic.

I was upset over something very personal that I could only touch on vaguely in my writing. So much wanted to come out and that stuff was better for a private journal than a blog.

I have had to decide where my line is in what I share on my blog. Just because I’m upset with someone doesn’t mean I need to air that in my writing. Sometimes it is ok. This time it wasn’t.

So I had to come to some acceptance with that family issue and I have had to try to come to acceptance with some other things that seemed to be causing me stress.

One such issue is my ongoing pain. I am sooooo much better. I am so very blessed. But there is still pain. I can’t seem to use my right arm ( which is my dominate arm) fully or for very long without some pain. I also get flares. It happens when I “overdo” in some way. The problem is I never know exactly what will trigger it. I am learning though but I still get surprised. A lot.

Ice packs have become dear friends. I have been known to walk through the grocery or hardware store sporting an ice bag of some sort under my arm. Ice really is my savior.

I have had to reach an acceptance with this pain. If I had to live like this I certainly could. Would it be ideal? No. Sometimes it’s really sucky. But I’m improved. I’m out living life.  I’ve lowered my nerve pain meds a lot. Hoping to lose some of the weight I’ve gained. Which is another area of acceptance I’ve had to reach. I can’t hate myself bc I don’t look the way I want. I am trying to embrace that I may never look like I really want again.

My body has been through hell. Three surgeries in one year and the last -fat grafting-was supposed to be liposuction on my abdomen that would make me look better and sadly I hate the outcome but the fat had to come from somewhere

So I’m trying to accept this. I’m into being in shape and being skinny. It’s how I grew up. Skinny was good. And sadly I was a chubby kid and That fact was reinforced often by schoolmates and Neighbor Kids. I have spent years battling my minds critical view of my body.

So for me it’s a mental exercise in trying to accept myself as I am now. I’m 54 and I’ve had many surgeries and cancer and I’m menopausal. I can work hard as I’m able (I limited in my activities bc of my nerve damaged right side) but I’m likely not going to look the way I want to ever again. I might but it may not happen and I want to be able to accept that. I don’t want to feel embarrassed for my husband to see my nude body. But I am. He thinks I’m beautiful. I have a hard time seeing what he sees. But I’m lucky that’s what he sees

I really am a work in progress on this acceptance thing. But I’ve come to realize that acceptance doesn’t mean giving up. It means that in this moment in time I accept that this is where I am.

I accept I still have pain but I won’t quit trying to find improvements. I just began laser therapy. It might help.

I do have gratitude for how far I’ve come and I’m thankful I found this brilliant nerve surgeon who wanted to help me as best he could.

I am accepting that my body isn’t what I want to to be. But really if that’s a worry in my life I’m pretty blessed seeing where I was two years ago.

As far as my family issue. I’ve had to forgive and I have had to give much of this to God. I can’t control someone else’s journey and I accept that. And I accept that where i am now – on the edge of this persons life – that I can’t do anything but let them know they are loved. That’s what I can do.

I think maybe I’m in a growing phase. Learning that I can’t be in control all the time.

My two sons just graduated high school. I have been waiting for this day! I feel like we’ve finished the first of a set of hurdles. It’s been a ride. But they begin college in the fall and now it’s up to them. They have all the tools to succeed.

Then going away is bittersweet for me. My role as Mom will change. It already has. Though I’m still buying the things on the “what to bring” list the College provides. It has to get done by someone and they seem oblivious to the fact that College is six weeks away. I, however, am ever aware. But soon I have to let go. I have to say “you need to try to figure this out  “ and let them muddl through.

Part of me can’t wait to boot them out the door. The other part is terrified. This is another thing I have to find acceptance with. I have to let go. I don’t know if I’ll grapple with the empty nest thing, I have my mom living here so I still have a bird in the nest to care for. But I think I’ll miss them more than I am imaging now. . And I know it’s time for them to fly.

But the acceptance comes with letting them do the flying. Letting them steer their course. I know they’ll need me once in a while. (At least for $). But I have to give this one to God and let go of my need to be in charge. I will always be their biggest fan even if they don’t realize it.

I also wonder what do I want to do? If I could catch up on all the things I’m behind on what do I want to do? There’s so many things. Some not attainable now. And some doable.

Since I had cancer I’ve been on this “you gotta live now” motto. And since I’ve been feeling better and have had less pain I want to avoid putting off things for later -when I can. But I can’t do all the things on my list now bc I have responsibilities to others that are a priority. I’ve had to accept this knowing it’s ok to take things a step at a time.

But my biggest question is who do I want to be now that all my kids will be gone from home? I think this is something that I’ll have to feel out.

If anything – I have begun to accept that I don’t always have immediate answers for so much in my life. I am learning to accept that sometimes we just have to wait and see.

And there is some excitement in that for me.

All you need is love -?


I was filling out a Valentines Day card today for one of my kids and it said on the front: “All we really need is love”— inside it said “but a little now and then chocolate doesn’t hurt.”  The chocolate part is true and I’ve found if I eat six small Dove chocolate candies everyday I am happier in those moments of chocolate bliss but maybe my waistline isn’t. And the truth is the happiness is short lived. But as for the first part of the card “all we really need is love” I am not so sure that’s true. 

All we really need is love….really? Is it?

Then what? The world for us is better ?  All our problems melt away? Sadly I’ve found this isn’t so. Receiving love is a gift and it can lift us up but I’ve found sometimes it doesn’t matter how much you love someone it doesn’t fix all their problems. A person may not want to receive our love and sometimes if they do it just isn’t enough. 

I was told for years if I just loved my son more he would snap out of his issues. He just needed more understanding, more hugs, more of me – and a magic wand would wave and unicorns would fly from the sky and his attachment issues would go away, and he would stop wanting to destroy our home or himself, he wouldn’t want to steal from his family, or ignore us and our rules. 

Kevin and I gave of ourselves and we tried so hard and we loved and still love and still it isn’t enough. We have exhausted ourselves trying to love someone so much that they will change. Life isn’t that easy I have come to find. Sometimes love just isn’t enough- but here’s the truth about love – even when it’s hard – even when it might not be received- even when it might not make unicorns fall from the sky – in the end love is a choice. And we the love giver must choose to keep loving even when it doesn’t seem to matter. That so hard sometimes-believe me- I know. 

Love is a choice – these words were spoken as part of a sermon I heard once. The pastor reminded us that love can be a feeling and a very strong one but sometimes it’s hard to feel love for that prickly person, that defiant child, that homeless person on the corner, or our neighbor -and when that feeling isn’t there we should choose to love anyway. Thank you Pastor Steve.  

One time a number of years back when I was in a very bad place of despair,  at one point I may have been praying or maybe just crying and a voice spoke to me or maybe it was a thought that came into my head that clearly was not mine and it said “Love is all that matters”.  In that bad moment I saw that so clearly. Like that was so easy -like why didn’t it appear this clear to me before? And simply yes that is so true -love is all that matters. Love here on earth is kind of like fuel and kryptonite all in one thing. It can bring us up and tear us down.  That’s because we muddle up love in it’s purest form and we always will. 

 The kind of love that we are called upon to give is one that’s unconditional that we choose to give no matter if we feel it or not. It’s not easy to live up to that pure of a love. But on this earth love is important and it’s easy to get frustrated when all the love you give someone doesn’t seem to help them or even matter. But what matters is we love anyway. 

Sometimes we have to let go of someone because their choices are hurting us. We can set boundaries and still choose to love that person. And I’ve done that. But here’s why love on earth can’t be as pure as love in heaven – or if you don’t believe in heaven or an after life just skip the heaven part- we are imperfect people. Face it – who wants to love let’s just say as an example Larry Nassar- the doctor that sexually abused all those woman and just received 175 years in jail? We are called to love him and God knows someone out there does and some out there pray for him and his soul. But most of us can’t be that loving -all I can think about is what he did to the young women he hurt. I can’t love him. 

And let’s take it further…he probably was loved by at least someone in his life and he is still a broken person..has no remorse and obviously has terrible mental issues. Sadly love wasn’t all he needed. But someone chose and probably still chooses to love him even if they themselves are disgusted by his actions.  In a way that is the magic of love. The capacity in which we are able to love if we make that choice – this amazes me. Still I can’t love Larry Nassar..feelings aside or lack thereof -I can’t even make myself choose to…I’m not Mother Theresa. 

In the purest sense those words that popped into my head in that moment of despair are so so true. I’d like to say that all that clarity made me better at loving but I am still human. I became more aware but I am flawed like anyone else and I am not that good at loving that unconditionally. I could spend pages and many words on the semantics of love because as true as those words-love is all that matters -are,  love is complicated here on earth because we complicate it with our humanness.  

But the point is when we choose to love we have to accept that we may not feel like doing it, and even if we do we feel strong loving feelings we have to accept we may not receive anything in return, and further we have to accept that we may try to love up a person all we can but that might not make a difference for them at all.

But we keep on loving. As Pastor Steve said:”because we choose too.”  

Happy Valentines Day 
The Beatles always inspiring music here All you need is love…..

A New Fear

I have been a swimmer for as long as I can remember. One of my earliest memories that I have is of me taking swimming lessons in the baby pool at our swim club. Following that I spent years on swim team and also just playing in the pool. Many times you couldn’t get me out. I’d swim all day.

I had a respect for the water of course but I was never hesitant to be in or on the water. I spent hours riding waves with my dad and friends.

In the last ten years I stopped going into the ocean as much -the fear then was stepping on icky things. I was more wary of the currents and undertow. Probably because I had little Kids and even if they had ease in the water the fear of your child getting pulled out into the deep looms large for most parents I imagine.

I still had a love of pools if they weren’t too crowded (that’s a germ thing-yes I got more leery of the humanity in a pool as I’ve aged and well it grosses me out if there are tons of people swimming in a small enclosed body I water no matter how much chlorine is dumped in).

I love the water and I really love being near or in the water. We have a cottage just steps from a Bay. But I now have a fear of deeper water.

I was out on the bay the other day on my kayak. Kevin was along on his kayak. It was a chilly day. About 55 degrees. I’m a new kayaker. I got a boat with pedals as I can’t use my arm to paddle because Of my issues with nerve damage and pain. I was thrilled when I got the kayak. I motored around last summer and if the bay was a little choppy I found myself feeling somewhat nervous. I am no longer sure of myself as a swimmer. I can’t really swim which because of my limited use of my arms but it really didn’t seem to be a huge issue last summer because the Bay isn’t really deep and the water was warm. But the other day the water was cold and seemed deeper and it was choppy. I had wetsuit bottoms on but just a jacket and hat on. And I was wearing boots. Wellington’s. Maybe not the best choice.

While on the water as I was traversing some choppy conditions I felt myself panicking. A full out freak out was just on the edge of my brain. I kept picturing myself falling off the kayak. Or it tipping. Me sinking as my boots filled and my coat became heavy. I feel the fear now as I write this.

I had a flotation device but not on me – it was secured on the back of the kayak. I tried to reach behind me to grab but my limited range of motion and the rocking of the kayak made it impossible for me to reach it. That was a rookie mistake not to have put it in.

I told my husband I was feeling very scared. Kevin told me to take deep breaths and as I did I felt myself regain control of my thoughts. The choppy water wasn’t really that bad. The boat wasn’t really in severe danger of tipping. I tried to enjoy what I was doing and concentrate on the beauty. I’ve lost the ability of being able to do a number of things since my nerve damage became so bad and kayaking gave me the sense of freedom that I’d been craving. I didn’t want to lose that to fear.

We ended the journey on a good note. I was calmer but I had a wake up call. I’ve definitely lost my confidence that I could save myself if I got into trouble. I’ve never felt this way before. It made me mad. Just one more thing that had been taken away because of my limitation and because my body is weaker because of being mostly bedridden this last year.

But anger won’t solve anything. I’m a problem solver by nature. So moving forward I need to figure out how I can feel less fearful in and on the water.

Over last summer when I first went out to sit on the beach at the ocean I walked up to the waters edge and watched the waves roll in and I realized even then that I was very leery about even attempting to wade in to my knees and not for fear of stepping on something icky –it was fear I couldn’t even get up if I fell into the shallow but wavy water. As a result of this I decided to head to the neighborhood pool and allow myself to ease into a better comfort with the water. During the first visit to the pool I ended up in the deep end with a swim noodle and I was able to ditch that after a time and then proceeded to tread the water and I practiced floating. It isn’t easy to tread water with one arm but it’s doable. But this pool visit gave me confidence to venture into the ocean at least up to my knees or hips. And subsequent visits continued to help my confidence. I also worked on leg strength in the gym when I felt ok.

So why the panic the other day?

Well I’ve had another surgery since summer. Just four weeks ago. I haven’t been allowed to do much and maybe kayaking wasn’t a good idea. Maybe I felt vulnerable. I’m definitely weaker. It doesn’t take long to weaken when your on restrictions to not work out or do too much physically. And I think the cold water scared me. Cold water can be paralyzing. But most of all my biggest obstacle that day was my own mind getting the best of me.

I am not an “I can’t” person but over the last few years I’ve said that more times than I care to admit. I want to be strong again! Mind and body. It’s so frustrating to try to get stronger only to be met with Pain as a result. But I’m going to try to figure this out. I’m not likely to kayak anymore this year. It’s getting too cold. I plan to be in some type of workout program. We have a gym in our barn so I have no excuse to at least try. And somehow I have to get into a pool. We have some indoor pools nearby. (Maybe they won’t be too crowded!).

I just want to feel strong again. I still deal with pain and that’s limiting -I have had three surgeries in the last year to try to get rid of it and it’s much better -but there may always be some pain I have to figure this out despite that. It can be done. I know it.

Next spring when I break out the kayak again I want to feel I could cross the bay (it’s a mile). I may not ever try it but I want to feel like I could. I want to no be afraid. I want to be strong.

More surgery / and my vanity

I’m sitting here this morning in bed. I’m having a bad pain day. The nerve pain is hot across my right side and chest and the there is that tingling tickling burning sensation that travels across to my throat. I cough. Nobody knows exactly why. They know I have a lot of scarring that has adhered to my chest under my arm and I have radiation damage as well. They feel my sensations come because of this issue. All these things that are very hard to fix.

It’s funny how such a little area can make a person disabled when it flares up. It’s very frustrating. I’m so much better than I was last year but I’m still plagued with pain and it’s too much of a focus of my day and it controls my life too much. So on Wednesday next week two surgeons are going to try to ease some of the pain.

My wonderful nerve surgeon and a plastic surgeon are going to try fat grafting. This procedure requires liposuction of an area on the body. With me it will be my stomach- and my love handles 🙂 -see the smiley? I’m all for losing some fat since I’ve put on weight from the medicine I take for nerve pain.

Anyway they spin that fat so they get the good stuff and then they inject in my areas of scarring and pain. The idea is twofold. The scar will be lifted off the chest wall which may relieve some of the pain . Think of having gum stuck in you pants pocket and the two sides are stuck together. Well that is my issue on the side of my body where I had the node biopsy. So your skin is all one piece and when one part is stuck onto your chest wall it throws everything off. My neck gets tight because the scar is so tight it pulls the skin and muscle all the way to my neck. I get rib and breast aches and muscle tightness in my back. All from this small area of my body being off kilter! So the fat will create cushioning under the scar.

The other thing that is looking hopeful with fat grafting is that the stem cells in the fat can help regenerate the radiation damaged tissues. This has been studied over the last few years and the results have been very promising.

So that’s where I am. My third surgery in the last year. All in hopes that I will get to an acceptable pain level. Pain free is likely not going to happen and that’s been hard for me to accept. But I have come to terms with it to a degree but I continue to look for ways to help it improve.

Thankfully I have an amazing surgeon who wants to help. He has brought in a trusted plastic surgeon to do the grafting as he assists. I offer myself up to their expertise and they are pretty optimistic that I’ll get some noticeable relief. So I’m praying this is so and crossing my fingers and toes for an extra boost of hope. If I get some improvement a second grafting can be performed. (More lipo!)

I did ask the plastic surgeon if he would put the extra fat in my face. He said he would during my exam but later thought better of it. Maybe it’s just too much for one session! Maybe he had been joining. I Just thought getting a few wrinkles filled might be an extra bonus!

Since my cancer and subsequent pain issues and because I have three teens who like seeing my hair gray – I have aged a lot in the last few years. So I have had some filler done in my face.

I can hear people gasping. But hello lots of us are getting Botox (I’m not a candidate in my forehead because I have too heavy a brow), fillers and nips and tucks. I don’t want to age gracefully if it is going to go this fast. It is not graceful. So I’m just trying to slow it down -and crap after what I’ve been through I deserve to do things that help me feel good about me.

I’m not one of the confident woman who can accept their body changes and aging. I wish I were. I’ve gained weight and I’m out of shape because I’m limited in the gym. I do walk a lot. But I am not feeling good about me. I’m used to being thinner and more muscular than soft.

I will say that some filler I have had I’ve liked and some I haven’t and thankfully I did not get the kind that lasts lots of years. I don’t like my cheeks probably because I’ve gained weight since I have had my cheeks done. And I feel too cheeky! But I like the filler in my smile lines and in a couple other facial lines. I’m scared to get the filler under my eyes. Which is a problem area for me so I invest in lots of concealer.

I share this because I’m not afraid to show my vanity which come from vulnerability. I’ve been tossed around the last four years. It’s been super hard . Sometimes I wonder why I am still so vain and not just thankful for what I have. The fact is I’m both. I’m thankful and vain. And truly it’s each persons choice what they choose to do or don’t do with their bodies. So I own it. I’m vain but I tell myself that’s ok because I’ve been through hell.

So when the surgeon was thinking he might put some fat in my face I felt excited and nervous. It’s like maybe I could have pain reduction and a cosmetic boost all in one. I figure he changed his mind for a good reason. Probably wants to stick to the real issue at hand. My pain. Which is just fine with me.

In the long run if I had to prioritize what is most important – getting rid of pain would rank #1. Obviously. So heres to surgery number 3 for my post cancer treatment pain – I’m praying for good pain relief . (And if he has some extra fat for a wrinkle or two maybe he would surprise me).

Oh and there is the liposuction 😉

Hey whatever it takes to keep the spirits up right?

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. 

October has come – some thoughts from a breast cancer survivor

Holy Cow! It’s already October. The summer slipped away from me as I rested in bed trying to stay away from pain. And as I searched for answers to rid me of the pain. Now it is fall- one days oozed into another and what seemed like an eternity  of time as I sat in bed day after day has slipped away so very quickly. I look back and I still feel as if it should still be June.

I’m going into my fourth month of this hell with my pain issues. The pink will come out today. It’s breast cancer awareness month. It’s a good thing. But it’s hard for me to sort out my feelings really.

Today my son runs in a cross country meet. I haven’t been able to go to any of the meets this fall. Which is a bummer. Anyway for October -the runners are going to wear pink shoelaces. My son wasn’t sure if he wanted to go to all the trouble to change his laces. He’s a teen and has his lazy moments. I kind of wanted him to want to wear them bc his mom had breast cancer and bc i am still dealing w the after effects of treatments. And he lives it with me everyday. He’s used to a mom who  is sick in bed. That makes me sad. But his wearing the laces -that’s just a personal thing bc this son and I are so close. His wearing pink is significant to me bc he lives with the real truth -the real awareness.

He wrote an essay for his AP lit class last month . Part of it mentions how he was effected by my cancer. It made me cry.  I so wish I didn’t cause my family strife in this way. I rather cause strife by being a nagging mom not a sick one.

Three years ago on oct 3 I had surgery to remove the cancer from my right breast. It’s was a stage one cancer. Early stage. And I had a procedure done called a sentinel lymph node Biopsy where I had 4 lymph nodes removed – all returned negative for cancer. During surgery  I had little tiny surgical clips placed in my breast and in my armpit -also called the axilla. They are used to control bleeding and they help speed up the surgery.  Not all surgeons use them.  I followed my surgery with 30 rounds of radiation. Later I learned that radiation can be as damaging to the body as chemo and the effects of radiation can show up years later. I’ve since come to know cancer survivors who suffer from the effects of radiation treatments. I’d like to say in hindsight I would change something that I did back in 2013 but I really don’t know if I would. I didn’t have the gift of hindsight at that time. If I have been asked if I wanted surgical clips in my body I think I may have said no but I can’t for sure say that.

After surgery, I had pain and limited arm range of motion. Radiation intensified the issue. A few months after my treatments ended i was shoveling snow and something happened – when I awoke the next morning I had tingling sensations that went across my chest. It was very painful and it made me cough. Over the years I have had pain in the axilla and in my arm and those terrible sensations that would go across my chest. Nobody knew what was wrong. I saw many doctors with nobody really helping except to refer me to someone else. So I gave up. I was able to deal with the pain and I tried to live with it -figuring this was the price you paid for getting cured from cancer. Then this year in late late May I began to feel worse. The pain was getting much worse -and the horrible chest sensations occurring more often and they were much more severe.

By June it was getting so bad I was basically in pain for our entire vacation and when I came home we began to really push for answers. Which has been hell. I was in a very dark place for a good while.  Read more about that here. But our luck changed when we found our way  to some great and kind doctors who listened. A physiatrist I saw said it could be an issue with my surgical clips as they are located in my areas of focal pain.

That sent me back to my original breast surgeon who treated me like I was an alien and sent me to another breast surgeon that left me wishing I’d used him from the start of my cancer journey . He was finally Someone who looked at me – right at me- and saw a person in so much pain and I could see his shock in his eyes. I had come so drugged to his office for my appointment that day and  I still had to ask to be placed in an exam room while we waited for him to get out of surgery. I had to lay down. Sitting for long is too hard.  He walked in and saw me on the table with a heating pad in my armpit and he was shocked I was ever allowed to be in that much pain and he was even more shocked when I told him I was unable to get out of bed much and too use my right arm much brought on intense symptoms.

He sent me to his pain management center a few days later -where I had diagnostic injections – and all of those docs  -breast cancer and pain doc and a plastic surgeon I also saw – referred me to a peripheral nerve surgeon that also listened  and was so kind. He has seen a large number of breast cancer patients who suffer like I am. Post Breast Therapy  Pain Syndrome is only just now getting recognized as a thing in the medical communities. Often you get doctors not understanding your pain and you don’t know where to turn. Which sends you bouncing from one doctor to another.

But this doctor got it. I liked him right away. We talked a good while. He did a diagnostic injection in my armpit and I reported my results to him. He was happy enough with the results to agree to go in and resection my nerves. He agreed that surgical clips could be caught up in scar tissue and nerves and that this could be causing my pain issues. He didn’t know why I coughed from some of my chest sensations but didn’t cast me off as s crazy person.  He knows the issue occurred after the cancer surgery so he feels it’s all related to my axilla and breast pain. My surgeon is worried I may have internal tissue damage from radiation which can make the case more complicated. The things that we have to help eradicate the cancer can damage us further.

So on October 12 -a little over three years since my original cancer surgery I will be having nerve resection surgery. And he will remove as many surgical clips as he can.  I’m nervous but hopeful this will rid me of much of my pain so that I can again be a part of the world.

This brings me back to pink October and breast cancer awareness month. I’m all for creating awareness. But I think many of us are quite aware of breast cancer and cancer in general it’s everywhere.  All of us have been touched by cancer.  Do we need to be made more aware than me already are? I think awareness needs to expand its scope. I know this is a big fundraising month for breast cancer organizations. And that’s the point for the pink in your face for the month of October. And I think giving is great to help further cancer research to find less barbaric ways to treat this disease. Because it’s barbaric.

In Mexico there is a clinic where they treat breast cancer in a very different way. So much less invasive -breasts aren’t removed -the cancer is treated through the heating of the blood -and it also it involves diet changes ,supplements , the use of hormonal meds like tamoxifen. No chemo. No radiation.  They have good results in treating early stage cancers. Many of their patients achieve remission which is no evidence of cancer in their bodies and they didn’t have surgery or chemo or radiation. Pretty amazing. There are alternatives out there.

The month of awareness needs to extend to the entire truth. Cancer is a journey for the person having treatment.  It doesn’t end the last day of chemo or radiation.  We are all left with scars. Some physical some mental some financial. I had all of them. Cancer doesn’t effect just the patient. It effects the whole family. People think we just should get on with life. And most of us who are lucky enough to be in remission do. But we have scars. Fear always follows us. Sometimes chronic pain infiltrates us. Sometime it pops up years after treatment.

We freak out inside at any weird blood test result. I had one yesterday. Liver enzymes high. I think it’s because I had taken a pain killer and Valium right before the  visit to my primary care doc for a pre-op check. But they are higher than my blood draw a few weeks ago. In my head swirls so many thoughts.  Rational and irrational. I had a chest CT that said I had nodules on my lungs and three docs have told me they aren’t anything. But when you’ve had cancer you can’t let it go so easily. I’ll get a recheck  on these things after I deal with this pain issue.  It’s the trajectory having had cancer puts you on. You never really let your guard down.

Let the awareness continue. But let’s not make the end of the story just that we are survivors. That you rid us  of cancer – you’ve really put me in remission and I will try to do the right things to stay there.  Let’s tell the whole story.  Survivors can end up with chronic pain issues and other nasty side effects from the treatments. They can end up with recurrence and other types of cancers. Don’t ask us to be thankful we are still alive and we should deal with our new normal. I am thankful but theres just so much more to it than just telling someone to get over it and be thankful and get used to a new normal. My pain wasn’t addressed early on properly and now I’m in agony. And now hopefully I’ll be in less pain soon. But the mental wounds are hard to shake.

There too many people that suffer after cancer. Some things needs to be fixed to keep this from occurring. We need better after care for one. And its coming -I see it now after hunting down doctors familiar with post cancer pain – but the progression is slow.

I’m angry inside – but it comes from frustration over my situation and I want to make people aware of the true realities of cancer – not just the numbers Komen and other organizations throw out about survivor stats.

I’m that survivor and I am here to tell you the truth.  The good, the bad, and the ugly. Cancer is just the monster that begins the domino effect of a journey you never ever wanted to be on. I’ve seen my strength and weakness pop up in the same minute. I’ve Seen the very worst of myself and the very best. I’ve learned I’m resilient. I’ve seen the darkest depths of despair yet I’m here to tell you about them.

I’m the woman at the walk to raise money for a breast cancer center that’s helps treat woman who are low income or who are not insured. I’m the woman lying on the table face down getting pain block injections.  I’m the woman laughing out to dinner with friends. I’m the woman in tears bc her doctor doesn’t want to help her. I’m the woman stuck in bed trying to plan her daughters journey to get into college. I’m the woman who makes meals when others need help. I’m the woman taking in those meals now so her husband has one less thing to worry about.  I’m the woman who is facing surgery three years after my initial diagnosis. I’m not the only one. There are more of us. We are warriors.

I’m here to create real awareness that the cancer may be gone but the journey is never over.

I don’t mind the pink but just know there is more to the story -a lot more.

Cancer means so many things. It’s bowled over too many people. It’s a journey of warriors. When you see all the pink in October and your sick of it maybe if you’ve read my blog posts of late maybe you can look at the pink in a different way and you can know the story behind the story and think of those cancer warriors making their way through life trying to pick up the broken pieces and live their lives. And think of those fighters who have left us. This month should also be about them. The ones who are gone.  The cancer org’s won’t focus on that. I have a list of those brave souls that I knew that were taken by cancer- I bet you do too. When you see pink think of them.

And on October 12 if you have a minute to send a prayer up for me or send good vibes for my surgery and a good outcome that would be such a blessing to me.

______

See More on my pain journey here:

Sidelined -the summer goes on. 

Powerless- in search of MY power. 

Did I leave? 

Sitting on the deck