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. 

Recovery and getting help. 

My wonderful husband Kevin has been worried about my surgical recovery in the aftermath of my fathers death.  It takes a long time to recover from nerve surgery and I haven’t been sure how I’m supposed to be feeling. I notice small improvements but then I’ll have a bad day. Physically and emotionally. 

I’ve been a wreck about my dads passing and we are planning his funeral and when you are trying to get family in from out of state and kids in from colleges and high school teens schedules it gets a bit crazy.  So Kevin has taken over some of the calling to funeral homes and to the reception place. I’m sure passing some of this off is a good thing.  Giving up control to others is not easy for me. I’m a good planner but I’m just not up to doing all that I’ve been assigned. My brother and I have been splitting tasks and he already planned the memorial for dad in Florida. I feel I need to really help plan the funeral up here in DC. But I’m going to have to give up some control. I need to heal. 

Since Kevin was worried about my recovery so was I. I encouraged him to write my surgeon. Which he did. And yesterday on a Saturday he wrote kevin -twice-back asking some questions and concerned about how this death and the grief I’m carrying is effecting my recovery. He is a great man. I’m lucky we found him. He asked if I was moving enough. He also wants to see me next week. He thinks I need to get into PT. In a pool. If it’s warm I’m cool with that! 

Kevin told me what my surgeon said so I thought about it. I’m not moving enough I’m stuck. I feel like when I get up I can’t do much and I often end up hurting. I’ve been walking but not enough. I’m not trying. I’m down. 

So I decided to get my butt up. I popped a little more percoset. (I take less than 1/2 a pill a day. I’m so weird about meds.) but the amount I take helps so that’s good. I got my shoes on and I went outside with my phone and just walked around. I took pictures and I took a walk. Then I came back in the house a couple hours later and I didn’t go back to bed until bedtime. I hurt some but I was ok. I felt kind of normal though. Like a person living in my home. Not a patient. 

It’s been easy to just stay in bed BC it hurts to get out but once I do I realize it’s what I need to do. I need to recover physically and mentally. 

I’ve had calls from caring friends. A couple encouraging me to seek therapy BC I have been through so much. My friend Jon told me that he knew I was strong but I had been through more stuff in a short period of time and I needed to seek professional help. I think he worried I might be upset but I so appreciate that he cared. It has been a horrible time and he reached out. I’ve been to lots of therapy so I fully agreed I needed to go. But getting my butt there might be hard. But I decide not to listen to all my buts..  I knew I wanted a person older than I am so I found Polly and she sounds nice and caring and I am hoping to meet her next week. I will be downloading on her (a new term I’ve seen streaming tv shows). She may be on the floor after I finish! 

I’m thankful to Jon for saying point blank “get some help”.  I was in a bad place for a long time even before my dad passed.  Jon ignited a spark in me to get myself together again. I need help to do it. Therapy will be a gift to me. 

So yesterday I took some photos on a gorgeous fall day. I wanted to share them with you. I love fall the the season changing and it reminds me that I am in a tough season of my life but my season will change. But I need to have my mindset right and push my body some to get there. 

Facing surgery. 

Tomorrow is my surgery day. I’m nervous which is normal. I feel a little bad about feeling nervous because I’ve prayed for for so long now for someone to give me some hope to help ease my pain. I finally found that doctor and I should be excited. 

I was excited early on after we got the ok from the doctor that he’d perform the surgery.  But as it’s closed in I’ve become less excited. 

I think in part because it’s surgery and that’s scary but also I want to get my hopes up that it will help reduce my pain a lot but then I’m afraid to get too hopeful. 

I want to be able to get out of bed and live my life.  Last spring I had pain as I’d had for over two years but I was dealing with it   It wasn’t optimal but I had a life outside the confines of my home and bedroom. Now it feels like such a reach to get that life back again. 

I’ve had to get my mind around my reality. It’s been hard. I was steadfast against taking any RX medications. Now I realize I may have to take some medications even after my surgery is over.  I’m taking some meds now BC once you get to a certain pain level ones stealth refusal to take medications is easily changed to give me whatever will make not hurt so much. 

I had never taken an opiate before but I have now. And even at 1/4 dose those suckers work. And I can see why people become dependent on them for pain relief and I can see how they can be used recreationally causing addiction. They make you feel good. So far I’ve only take a total of maybe 4 pills in all the months I’ve be feeling badly. I didn’t want to become needy for them. I so take Valium which for some reason helps my discomfort but I take that sparingly as welll.  I wonder after surgery where I’ll be with this. Directly after I’m sure to need pain meds. But I won’t know about the long term for a while. 

 After breast cancer surgery I didn’t take anything for pain and the pain was bad but doable for me. But I’ve read since that It’s good to take pain. meds after surgery as it may lower the existence of pain in the future. It has something to do with the brain and the nerves getting a rest from eacother. In fact in some cancer centers woman are given general anesthesia and a nerve block. This has been researched and it seems it also helps lessen the chance of post surgery long term nerve pain.  

My mind kind of goes everywhere today. I need to shower tonight. I have to be at the surgery center very early and my surgery is early. I have to leave the house before my kids get up. I need to get things ready so I can sleep (hopefully) as close to our departure time as possible. I have to wash my surgical area with some special soap before I go.  I’ll need to take meds before I go. I can’t eat after midnight. So I have planned a second dinner at ten.  Trying to get all this straight while being nervous is kind of overwhelming. 

I’m lucky to be surrounded by people who love me and who I love. I also have my sweet dogs milling around trying to help the take edge off of my nerves. I love how they just live life in the moment except when it’s almost chow time. They seem to anticipate that. It’s nice having my golden Rudy here. He chooses to be with me over playing in the yard with his buddies. He’s gotten a bit heavy -we will work on that with some ball throwing when  i am feeling better. 


Kevin -my husband- has been incredible through this. A better friend and partner I couldn’t ask for. You don’t realize until your sick how much it effects the entire family. This has been a 3 year ordeal. My kids have seen me at my worst through this. And I’m sorry for that. Maybe after this is done and I’m feeling better I can make it up to them in some fun way. 


Right now, I think I’ll do some meditation and prayer. That should help center me I hope. I’ll picture myself whole and walking on the beach.  Or riding my horse. I’ll think of the endpoint -focus on the outcome I  want. 

And maybe I’ll focus on the meal I want after surgery and I’m through recovery. 

I like to eat.  

Thanks to all who have sent me notes and have prayed and thought of me through all this. Keep me in your thoughts and prayers at 7am tomorrow if you can. 

God Bless. 

😘😘

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

 

Sitting on the deck

Earlier today my pain level was eight. I didn’t wake up with that number but as I get started in the day which usually means sitting up in bed and eating breakfast the pain level some days increases quickly. That’s what happened today. 

Last night I took a walk – but not my usual walk -it was dark by 7 o’clock and I think I was kind of shocked that fall  is here and it’s going to start getting dark earlier. I realized I slept through most the summer like Rip van Winkle except for I was sitting in bed -kind of a bummer. Anyway , last night I went into our  gym which is in part of our barn and I walked on the treadmill and I think that may have been the catalyst to my pain today. When you’re on the treadmill and you’re kind of stuck in one position when you’re walking and since I’m on some medication that can make me a little off-balance I was holding on with my “good” arm. It began to feel uncomfortable and I could tell this probably wasn’t a great idea and I stopped after only 11 minutes but the price was be paid today.  Walking on the lane is much more forgiving. I’ll have to make an adjustment to my walking schedule from now on.

Not gonna lie I can get myself into kind of a tizzy when this pain starts to flare up. So I quickly took some Valium which seems to calm me down and relax some of the muscles in the areas where I get pain from the nerves that are being pressed on. Or least we think they’re being pressed on. But we will know soon enough. When the Valium kicked in I jumped( ha ha in reading this as I edit I must say jumping is the wrong word- maybe slowly stepping is better) into the shower. Which for me is a big event and a difficult one. But today the warm water felt good falling across my body. I stood there just letting go of my anxiety and I let the water wash away my angst. After the shower I dressed which is another huge feat for me -so I got back in bed and I realized I was still feeling a lot of pain so I took about a third of a Percocet. A few of my doctors have said to me that I take baby doses of medications and I need to take more. That’s all true I don’t like any meds so I tend to take a little bit at a time but unfortunately when you take a little bit they only last a little bit of time. 

But today I took advantage of that time. Usually when I take Percocet and valium I am usually on my way to the doctors so by the time I come home the pain has returned and I’m exhausted so I go back to bed. But today I had nowhere to go so when the Percocet kicked in I had this feeling I needed to go outside. So I did.

 I’ve been hearing a lot of banging from next door. Our neighbor is putting up some sort of fencing in the backyard and Kevin and I haven’t been able to figure out what animal or animals are going to go live in that enclosure. So I went out to watch him – to try to figure it out. I guess I could ask him but I don’t really know him-  he’s the grandson of our deceased neighbor June he and his girlfriend moved in last fall. My husband has met him and I told him maybe he should go ask him what he’s building  and we both laughed. It’s so silly. Sometimes in the country you avoid people and other times you’re helping them take fallen trees off the lawn.  It’s a weird dynamic out here. You don’t want to interfere but you’ll help when asked.  My only concern with his fence is that it is really close to to our dog fence and whatever he puts in there will be face-to-face with our dogs. I’m thinking it may be goats because he has a shed and now that shed now has a new dog door sized hole in it. Often used as goat doors. He could be moving his dogs to the shed but I don’t think this is so. If it is goats I  wish he had built the fenced in area on the other side of his shed where there are no people that would be bothered by the constant noise of goats. And they are noisy I had some. I liked having them -sort of-but I don’t miss them! And my deck is right there very close to this new enclosure. My neighbor is a bullrider as a career – so I thought maybe he could be putting a bull over there but the fencing doesn’t look like anything that would hold a bull. The mystery will unfold or we will just ask him. But I told Kevin to get ready to plant some trees or bushes depending on what animal lands there. Bc I don’t want to sit outside on my deck with the cacophony of my dogs barking at their animals. Maybe bushes will be a buffer from goat noise.  

Once I was on the deck and I was done spying on our neighbor something just pulled me to sit down on one of our gliders and just relax. I hadnt been outside like that in weeks and weeks so I sat on the glider and I meditated and I fell sort of asleep had some weird short dreams. I prayed and I just sat enjoyed the sounds around me . The birds were not gone like I thought they were floating around in the trees and singing. I enjoyed hearing the sound of my horses walking around the paddock and the chickens clucking  in their yard and I even enjoyed the traffic passing by the front of the house and the neighbors chop saw whirring away. The sun beat down on my face and on my legs and feet it was beautiful and glorious day. And for a long time today I didn’t haven’t much pain. The wonders of drugs. For a while I was part of the real world.

A few times I began feel guilty about sitting out there. Because I try to take times when I’m not in so much pain to catch up on work for our business and I definitely had some things to do. But somehow I was just able to push that guilt  away and I was able to enjoy myself and relax. So unlike me. Must be the drugs. 

Today I was feeling thankful. Last week, I finally found a surgeon that is willing to operate on me –finally. We have a surgery date in a couple weeks. It’s like a huge gift but i’m almost too afraid to be too hopeful about anything. I’m so tentative about everything. This definitely isn’t the way I like to live my life- being tentative. It’s definitely not something foreign to me. But it’s something that I try to avoid. I try not to look at things in a negative way but this journey has been so filled with ups and downs (and a lot of downs )that I just can’t get myself too hopeful for anything. But for right now I’ll be thankful that I have planned surgery with a hopeful positive outcome .

But for today I am mostly thankful for just being able to sit outside for an hour and was able to enjoy the beautiful weather and beautiful scenery in my backyard, and the fresh air and a time to reflect. After I got up and went back inside I felt the need to look at the Dogwood tree out front of the house  that holds many  of my bird feeders. When I stepped out, I heard the rustling in the bushes and I went stood under the Dogwood tree and looked up and saw a little finch looking down at me along with a nuthatch. I smiled up at them and said hello. They flew off to the tree at the other corner of the house. I turned away but caught a few other birds moving about out of the corner of my eye. They are back. The feeders are full -and because my husband loves me and knows the birds bring me joy they will stay that way. I look forward to being able to fill the feeders myself again. I may even treat myself to a couple of new feeders when that time comes. It’s the little things.

Today for just a little while I felt normal again. I felt like I will feel well again and that there is that hope in me and that was good. Today was a good day. Today on the deck. Getting a date for surgery. Things seem to be looking up. But like I said I can’t get too hopeful. But I can be thankful for the time I had today just enjoying being outside being part of the world. It was nice to feel like a normal human again – even for just an hour. 

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Postscript – Kevin asked the neighbor what type of animal would be living in the new enclosure he was building. And it’s not goats! It’s a mini-donkey and maybe a companion goat(I hope not)  or another companion donkey(I hope)! I love donkeys and have wanted one for so long so now I’ll have one right next door. Perfect! 

Powerless- in search of MY power. 

Recently my friend and author Jon Katz wrote a blog post on truth and power. 

In his post he quotes author Bill Ferguson (“How To Take Your Power Back”) who describes what it means to lose your power in this way: “When you fight the truth of the way your situation is, you give it power. You make yourself a victim and put yourself at the effect. To get your power back, stop the resisting. Surrender to the truth of the way your situation is.”

This quote really resonated with me. This issue of giving up power in ones life isn’t foreign to me. But where this idea sits with me now in my current situation which has been incredibly hard for me.  I have been in terrible pain all summer. See links to those posts below.  I’ve been bed bound much of the time. It’s been a mind blowing and mind changing time. I’ve seen the worst of myself and maybe sometimes the best of myself. I’ve become dependent on others in ways I didn’t think would be necessary until I was much older. Having to have your husband wash your hair when there’s no chance of hanky panky isn’t where I want to be in my life. I’m unable to care for my kids like I want. Thankfully they are teens and have some ability to be self sufficient (sometimes that’s not as good as it sounds). I can’t care for my animals and let’s face it – these are my animals. Nobody else in this house would have all these beings to care for if it wasn’t for me and I am responsible for them and I can’t even carry a bucket of feed. 

But I don’t want to become a victim -yet I think I have.  I don’t want this situation to have power over me. Yet it does. I mean I can’t get out of bed because of the pain.  Maybe in my case I could be seen as a victim of this particular circumstance  – I didn’t ask for cancer (who does) and I certainly tried to deal with and find answers to my pain issues after cancer treatments to keep me from getting this bad.  Yet here I am. And I’m angry and scared. But this is not who I want to be. My husband and I have spent long hours this summer trying to find the help to fix me. I’m trying not to feel victimized. Yet I’ve run into many roadblocks and I’ve began to lose hope and that sunk me deeper into despair and then I have become more of a victim and I realize what’s really happened is that the hopelessness I’ve felt is really me feeling powerless in my situation. 

How does one get that back their power? 

According to the quote above I need to stop fighting the truth of my situation. But does that mean I’m giving in to it? Accepting that this is my life? It seems too unacceptable  for me to do that.  It seems more like giving up. But maybe that’s the point. Maybe by accepting the truth of my situation doesn’t mean I accept its going to go on forever but if I accept the truth of where I am now I can actually take back some of the power I’ve lost and begin to regain some hope. 

To keep fighting the truth of my life at the moment isn’t doing anything positive for me. Sure I’ll wallow in times of great pain and I’ll cry rivers of tears but perhaps to accept where I am now will enable me to see that this doesn’t have to be where I’ll always be. And somehow maybe that will make me feel less afraid and less like I’m in a cage. Will I then feel like I have power again?  Because I have lost my power and I never realized this as the truth until I read Jons post. 

We can so easily let our power slip away – we don’t even see it. 

I don’t know if I can accept where I am as my truth now. Even though I know it’s my truth. It’s the fear that this will be my truth on and on and I don’t know how I’m getting out of it. I’m tired of the loneliness of sitting in my room in my bed watching TV, being comforted by my dogs, reading books,taking pills, and oddly worrying about getting fat, or thinking things too sad to share here.  I’m just not willing to give into this fully as my truth yet darn it. But it is my truth right now. I do feel the times when I am able to face it and not let the what ifs take over and I give in to the reality a little a I feel that planner Anne step up and say OK what do we do now to get me the hell out of this place? I feel that power in that moment.  I know she’s there. Under this frustrated and weakend human being that old Anne is still there. And she has been robbed of her power off and on much of her life but has always managed to get it back.And in some ways she may never get it all back. But in this current situation that’s is not acceptable. She needs to get better. 

  I think power comes in many facets of our life and perhaps when we find power in all the facets we reach some true synergy .  I’ll be lucky to find that in this lifetime. There are still too many things that have power over me -but I’ll take finding my power again in finding my way out of where I am now. 

In my moments of weakness I have wondered if I’ve done something so horrible in my life that I’m now paying some type of penance at this moment in this situation. My dear husband said if my rationale were true we all would be paying for our sins in  some terrible way.  Criminals wouldn’t need to go to jail if it was tit for tat- ok he’s right on that point. 

 Am I supposed to learn something from this situation thats deeper than what I want to conceive? I don’t think things happen just because. I think things happen for reason and I think every single thing that happens to us in our lives gives us a chance to learn but maybe that’s my type A talking. I’ve had a lot of things happen over a short span of time and I’m still trying to figure out what I’m supposed to learn from these things. But laying here pretty much helpless has giving me perspective on some things maybe that’s the point. I now have a better understanding of how people with chronic pain live. It’s not just take a pill and get the hell up and do something -that’s so not how it works -maybe in the past that’s how I thought it worked. Now I get it. I know how I’d like to live my life when I’m finally freed from this bondage. And maybe I’ve learned to be a tad more patient.  But maybe this is one of those things that you understand better in hindsight much later in your life. 

Or maybe I’m having one hell of a pity party and I’m not willing to see it. 
 I really don’t want to feel like a victim of my own story in this situation -I don’t want to feel hopeless.  It’s just that so many doors have opened and closed on me on this journtey. I have this fear that if another door closes I won’t have the strength to find another door to knock on.   The closing doors are like kryptonite to my power.

But I have a voice and my husband has a voice and we can and should feel powerful to use it to tell my story a thousand times until someone listens.  I’ve been giving others – in this case doctors and other health professionals all the power- and I’ve felt powerless which led me to lose hope. But I have a husband to lean on that is a blessing because others in my situation might not have that. And he’s been the driving force behind getting me to places and getting me heard. He’s been the shoulder I’ve leaned on when I just couldn’t take anymore.  He’s as frustrated as I am and Saddened that ive gotten this bad. Thankfully this week I did meet a couple of doctors that seemed as shocked about this as we are. I’m too afraid to put too much hope in them. It’s just too hard. 

It’s been hard for me to write about it -physically BC using my arm for too long brings on pain. (i’m learning to depend on the “voice to type” function on my iPad and I’m getting better and better at it) and  to get myself to write about it has been mentally hard. But when I do write the truth about it I feel freer. That’s the power I have -to express my pain and my anger and at times my sorrow. This is my voice right here where I am now and to me writing is power and as long as I’m writing I’m not giving up and that’s hopeful.  Right? 

The only way I’m going to get hope  back is to accept where I am now and that it sucks big big big time but this situation isn’t going to own me and squash me. The way I’ve been feeling -victimized- isn’t doing me any good at all. Something has needed to change. Do I want this to have power over me? Do I have the power and the strength to face it head on?  Maybe I have been facing it but in bits and pieces. Sometimes being in pain just makes you want to shut out the world and sleep and not deal with this at all. But maybe when I face the truth  in those  bits and pieces I gain some power and I get back some hope. And  Maybe that’s the best I can do now – moments of power moments and of hope. But it’s something.

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If you need to catch up you can read  my pain story from the beginning of the summer :

https://notreadyforaarp.com/2016/07/24/figuring-it-out/

https://notreadyforaarp.com/2016/08/21/sidelined-the-summer-goes-on/

Figuring it out. 

August brings about the end of summer break for my kids and the anniversary of my diagnosis of breast cancer.  This year will be three years from my diagnosis and sadly I am not in great shape – and it is not where I thought I would be three years out from cancer. 

I had an early mammo in June because I have been dealing with exacerbating nerve pain. So the first thing they rule out was more breast cancer. And the mammo and sonogram – done for safety purposes- were clear. Normally I would post such an event on Facebook and we would all celebrate. But this year I just cannot do it. Its not because I am not thankful for the news I am…but I have too much bitterness right now.

How can one be grateful and bitter all at once? Its rather easy for me. I can separate one from the other. Cancer in breast is gone – yay! But pain that stems from all the breast cancer therapies is as worse as its ever been.

The reason for my bitterness and profound sadness is twofold- the first being that i am not loving being almost bedridden with nerve pain. Too much movement throws me into pain and discomfort so I have basically tabled any fun thus far this summer in order to be able to get through the day with the least amount of pain as I can. So I am pretty bitter, sad and depressed.

The other reason I am bitter is because I began speaking with my doctors about these nerve issues over two years ago. And nobody really listened. Early on they twice tossed me over to the Lymphedema (LE) specialist and I even got a fancy pump for a really mild case of LE and finally the LE specialist told me she couldn’t help me anymore (not her fault- I was not being prescribed the right treatment).

I lived with the pain for a good while after that and from time to time I would try a new doctor or mention it again to another – but by the end of May the pain became more than I could deal with anymore. I needed help. The idea of having to find someone to listen to me and really hear what I was saying was daunting. I had never gotten any help in the past for the pain and I didn’t have confidence in my own cancer doctors to think they would listen.Thats enough to squash a spirit – even one like mine that can put up with quite a bit before it gets squashed. But frankly I have been through ALOT of crap over the last three years and my spirit is beat. The idea of spending my summer and perhaps my life feeling like this was just too much.

The thing was as my symptoms exacerbated they began to look like I had a condition that is not uncommon to woman who have been treated for breast cancer but sadly it is often misdiagnosed and often overlooked.   I had what looked like Post Mastectomy Pain Syndrome (PMPS) it’s also called Post Breast Therapy Pain Syndrome. Basically it is nerve damage of one kind or another that results from breast cancer treatments. It’s can vary in its symptoms and pain levels. I had a couple outlier symptoms too and those were the ones I lived with for the last two years and I can see how these might have thrown docs for a loop but honestly tingling and burning pain is nerve related and after a while someone should know what to do or where to send me. And I now wonder had we addressed these things sooner would i not be sitting here with the escalating pain I have?

I saw many doctors who were very puzzled by my issues.  I felt like I was getting passed around like a hot potato. But as the symptoms began to match those of PMPS I became more adamant and maybe pushy and weepy a few times (I don’t like when I cry in front of my docs BC they see cray cray lady) with my doctors insisting I was not doing well and I needed to be helped ASAP. 

The last thing I wanted to do was to bring up what I think I might have wrong with me with my doctors. But the way I see it is that I am being my own advocate. There isnt any doc going home and doing hours of research on my behalf. So the key is to find someone who will listen to you and the research you have done and want to work with you. Its a needle in the haystack in my experience. 

 We survivors are supposed to suck it up- learn to live with our “new normal” -but my new normal is way worse than my old one BBC (before Breast Cancer). I am willing to suck much of the discomfort up for the result of being cancer free – but I want quality of life too and I think I should be able to have that- or maybe I need to come to the realization that I might not get. But I am not there yet. 

There is that voice that kept telling me to just get on the internet and do what I do best- research.  If anyone out there needs to employ a researcher I am your girl. I have spent hundreds of hours while sitting in bed figuring out who needs to see me. This pain syndrome I have has literature dating back over 14 years. But the problem of PMPS is just starting to become more looked into. But it’s slow going. It’s hard to find the right people. 

My research paid off.  I found that a physiatrist I saw last summer is actually doing research on PMPS treatments. Physiatrists specialize in rehabilitation. I was lucky since I had been to see him last year I got a quick appointment. Last year I didn’t give much of a chance to help me as I wasn’t having as intense pain back then and I was managing it somewhat and was not wanting to do what he was thinking of prescribing for my frozen shoulder on my cancer side.  Bad patient. Since then my shoulder has thawed (which may be why my nerve symptoms  are worse ) and now my other shoulder has frozen. (Lucky me). I also have a broken toe but that’s not even a factor at this point -I just taped them together.  It’s been a cluster around here. really. 

I have now seen this physiatrist again and I am going to see this thing through  with him. He listened to me and asked me many questions. He seems to care. He has done some diagnostic testing and I’m set to get injections in the next couple weeks. We are developing a plan that will include injections and oral meds (which I hate taking so I’m waiting to see how well the injections help) and maybe physical therapy. It will depend on the testing results I suspect. So there is hope but this pain syndrome is complicated as most chronic pain is. 

I’ve looked into alternative treatments too. My TENs machine has been a huge help and I’ve gone to massage and done a treatment on a biomat. I think doing these things has helped me feel less helpless. 

Now that I’ve got someone trying to help me feel better I need to get my mind in a better place. It’s taking some work. And it may be that I need to talk to someone.  I’m feeling a lot of anger and perhaps it’s not only because of the run around I’ve dealt with over this issue but also just the cancer itself. I don’t blame myself for being angry but I also know that talking that out with someone may help move me ahead. 

I also want to be able to cling to hope. For a while I felt hopeless. That’s a scary place to be. I think being heard by a doctor has given me validation. But I know that I may be dealing with chronic pain for good. That’s hard for me to bite off now. I’m hoping that I can get back to things I love like riding my horse and working out. I’ve been walking daily so I don’t go insane. 

I just want to live my life the best I can. I want to enjoy new things and travel. But I don’t want too ahead of myself -just going out to dinner with the family is a good goal now.  

I’m am trying to get the spark back to write because that is something I can still do. Everything just feels off for me now and I’m hoping as I move forward to get myself fixed I’ll start to figure this all out. 

And when I get more details to this story I’m going to let my cancer Doctor know the path I took to get help and perhaps it will help them know what to do the next time a woman comes in and complains of chronic pain. If I could save someone else the frustration of running in circles for years trying to get help when she’s feeling badly then maybe this will have been worth it. 
 

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Info on PMPS:

This one mentions chest wall pain and tingling which baffled my dos BC I said it made me cough. 

https://www.sharecare.com/health/breast-cancer/what-is-post-mastectomy-pain-syndrome

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http://www.plasticsurgerypractice.com/2012/02/understanding-and-treating-postmastectomy-chronic-nerve-pain/