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

 

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.

——-

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/

Bee stings and love

I got stung by a bee today on my foot.  It wasn’t the bee’s fault – it just got caught up in my flip flop. I felt awful for the bee. I should have had boots on but maybe I would have squished it anyway but I would have avoided the sting. 

As I was jumping around freaking out about the sting – and calling to my sons and husband  for some help – I began to cry.  

I was scared. I’ve alway been afraid of bee stings. I have a fear that I will get allergy to the sting. I don’t have one I’m just afraid I will become allergic. 

I was so afraid of bees as a kid I would put myself in perilous situations just to flee from them. Once I nearly made our bus driver crash as I ran up the aisle of the bus screaming BC a bee was buzzing somewhere in the back. The driver slammed on the brakes of the bus and I went down flying head first into the seat. She was steamed at me. She didn’t care that I hit my head. She just yelled at me to sit down. So I did trying to hide my tears and my shame.

 I remember getting out of the bus and holding a little terrarium that I had made in art. We used layers of colored sand and placed a little succulent inside and put a top on. I was so excited about that terrarium and when I got off the bus I was finally able to compose  myself BC I was away from the bee and the embarrassment. I began to take inventory of the damage to myself and my belongings. My head throbbed but I was ok. I held up the terrarium and all the insides lay in ruin. The layers of sand were mostly blended together and the little succulent was unrooted from the sand. 

The tears began again. I cried a lot when I was a kid. I think some people became immune to my tears. But not my mom.  I took myself and my broken artwork into the house and tried to explain in choked words to my mother what happened. I can’t recall exactly what she did but I know she cured the tears that fell and the terrarium was fixed enough so the little plant was rerooted. I remember that terrarium sitting with all its imperfection in our kitchen.  My mother hated to see me sad. 

These days I’m not so scared of bees that I run from them. I even will catch them if they get into the house so I can free them into the wild.  If I find a bee in the house it’s their lucky day. 

We did have some of those bees that burrow into the siding of the house and somehow they began making their way inside. They didn’t meet as kind an end. They were nasty and they came in by the dozens. It took an exterminator and my husband a number of attempts to get rid of them.  We still have blobs of spray foam  bulging from holes in the siding of the house. We haven’t had a swarm in two years. I hope they don’t return- they deliver a nasty sting.  I don’t know what the purpose of those bees are but I know they aren’t good like honeybees. 

Speaking of stings – the one I got yesterday hurt! I began crying out of fear and pain and as I sat wimpering on my porch waiting for my kids to grab some ice and baking soda I wondered if today was the day I’d be allergic to bees and have to be rushed away to the hospital. It would be bad timing BC my husband had to take one son to an encampment that was over an hour away. If I had to go to the hospital I would ruin that. 

It turns out that my sting didn’t even swell much. Maybe she didn’t get much venom in as I pulled my foot up fast when I felt the bite. I saw her in the grass and felt badly for  her.  My fear of bees has grown into a respect of nature ( unless nature is living in the walls if my home). 

But I wonder where those tears come from. Well the tears I think I get. They are from frustration and fear. The frustration BC I haven’t been able to catch a break lately. I am dealing with chronic nerve pain from the cancer surgery and though it’s been two and a half years since surgery I am still dealing with this issue. It’s been worse in the cancer aftermath than the actual treatments were. My life quality of late has been less than subpar and I know those tears wait on the edge to come. All it takes is a little bee sting and a dose of frustration and fear and the dam breaks. 

It’s funny or odd how an old fear can take hold of us and wash over us in an instant. I knew in my brain I was most likely not allergic to bees but the fear was seperate from the rational thought. I just had to let it wash over me. It would pass in time. 

I was a fearful kid – every week I had a new fear. Fear of germs , fear of touching boys ( my parents must have loved that -but it definitely was gone by the time I hit puberty), fear of ticks. So many fears. 

Some of the fear followed me into adulthood and I developed a pretty major anxiety disorder in my 30s that I try hard to stomp on as best as I can. Some new fears arose that I learned had a fancy name called phobias. The phobias that remain aren’t life altering. I don’t eat shellfish BC I’m scarred of allergic reactions. Though I ate shellfish to the gills (pun intended) when I lived in Boston. But one day somewhere back in my 30s -maybe- I just cut off the shellfish eating out of fear. It’s not a big deal and I actually don’t miss not eating it except once in a while I’ll see my hubby eating shrimp or a crab cake and want a bite. Hubby always is willing to share and I am sure often wonders why I have this fear. But he loves me warts and all. 

I am warty. But we all are aren’t we? Or is that a delusion I convince myself of?  It’s taken years for me to love myself for the whole person that I am. And some days I fail at that. 

As I sat on that porch with my husband who was trying to comfort me as my mom did so many years ago – he made me feel safe. I knew I was being a little silly but I found the tears cleansing and maybe I just needed that cry. For an instant the child in me took over- the one who had so many fears. She may have been fearful but she was a good girl and had a loving  heart. She still does. 

After a bit I told my husband he could get back to the million things that he was working on. I picked  myself up and went inside to wash my face off and put on some socks and boots. 

I saw my kids who had seen me crying and had tended to me as I sat  on the porch and I wondered had I been comforting enough to them when they got stung? I probably tried not to show my fear to them when they were the ones hurt. I never wanted my kids to be fearful the way I was. I knew that the fear can hold you back and can stigmatize a kid. But was I too stoic with them? Did I make them feel safe? I hope I have. 

Even now as teens they act like they don’t need me but they do. I’m the tough one – the strong one. I get stuff done. But over the last couple years they’ve seen me at my worst – on my knees asking for Gods mercy. Do they think less of me? 

I hope not. I hope they see a human. One that stands tall for them but one that can fail and one that can cry in the face of fear. We are all a combination of feelings. We have to let them out and embrace each one because that is the essence of who we are and we need to love ourselves. 

As I saw each teen in the aftermath of the bee incident I said “I just get scared that I’m allergic to bees for some reason.  I know it’s silly”.  Each one in there own way said they knew and it was ok. Each one said they hated bee stings too.  Each one asked me if I was ok. Some sweetness from often seemingly uncaring teens. It’s in there. 

I went back to the chicken area to finish what I was doing before I got stung. The sting was still a bit painful but I had myself fairly convinced that I would be ok. I turned to see my husband looking at me. 

“What’s up?”

” I’m just making sure you are ok.” 

“I’m ok I think. I just hope I’m not allergic. ”

” If you were allergic you’d know by now” 

“I know it’s silly to be scared like that.” 

“It’s how you feel and that’s ok.”  

He gets me and he loves me. My kids try to get me but they love me as only a teen can love. That’s comfort, love,and safety all rolled up into the messy thing called family. 

And I’m ok. I’ll wear boots next time. Sorry bees. 

Breakfast in bed 

I have breakfast in bed almost everyday.  But there is a story around it. There is always a story. 

About the time I was diagnosed with cancer in August of 2013 -we had another big Change in our family. My children who were now young teens -the boys about 13 and my daughter about 15- started public school and they took a bus. Prior to that my husband-Kevin- or I would drive them to private school and pick them up. Often we did this together as my husband had a flexible schedule being in sales and/or personal training (often he as had more than one job at a time. ) 

When the kids began public school the bus was a blessing as I had been just diagnosed with cancer and getting up in the morning got hard for me. After surgery i was sore and then radiation kind of slams you into a perpetual tiredness that took months to wane after the treatment was over. 

I will go on recorded to say I have  never been a morning person. Ever -not even as a teen.  I have forced myself up at early hours in the past to take shots of sunrises (I prefer sunsets!) and also to drive myself to my various jobs but as the years began to open up opportunities for people to work flex schedules I took advantage opting to come in later to work in the morning and to stay later at night. For years now I’ve worked from home running a company we own so the 5:45 am alarm for me was gone. In fact I stopped sleeping with an alarm clock by my bed years before we could tell Siri on our phones to wake us at a certain time. I felt it was such a luxury not to be told when to get up. 

We moved to our little farm over five years ago and in the beginning i got  up every morning to do chores. But Kevin begangetting up earlier to train clients in our gym and he began to do the morning  farm chores. It was too early for me and after cancer treatments I had physical issues that precluded me from doing the chores alone.   That kinda was a bummer even though I wasn’t missing getting up -I missed being able to do some of the things I did before.  And mornings are so pretty here. Maybe not the early Kevin mornings but an hour later is still really nice. But since I couldn’t do much I stopped getting up for morning  chores.  Sometimes I miss those mornings and I do get up and walk outside and do the chores that I can do and enjoy the peace of the morning. But more often I linger in bed. 

There was a time when I was in my early 20s that I became ill. It was a weird thing. I felt tired like I had the flu all the time. I would sleep so deeply only to wake up in the morning to be tired again after being up only an hour. A lot had gone in around that time for me health wise – I had had a surgery for ovarian cysts but I recall that I was feeling the fatigue prior to the surgery. I wasn’t able  to work full time. At the time I was living with my grandmother (Nana) and she was diagnosed with cancer and died a short time after my surgery.   I was wrecked from losing her. I ended a long relationship at that time and I was going to have to move from my grandmothers apartment and find another place to live.  I also began to date a new person who I would date for the next five years. That relationship was probably not something I should have started then  but I was so lonely.  Perhaps it did help me to get better as well as it made me stay active going  out on dates and trying to appear like I felt well.  Fake it until you make it. 

I struggled so hard feel better and after my dad read an article on Epstein Barr virus he suggested I ask my doctor for a blood test. And there it was. The diagnosis. But nobody knew how to get rid of it.  

I remember praying to God to help me. One day I had lugged my bicycle down the steps from my nanas apartment after she died but before I had to move out and I was determined to ride someplace. I had fallen in love with cycling when I lived in Boston the year before and I could ride some huge hills in Vermont and New Hampshire. Cycling up heartbreak hill in bean town was nothing- but that day in front of my grandmothers apartment I could hardly bike around the block. So I prayed hard for God to heal me and I vowed that if that vast tiredness would go away and  I could function like a normal person I would never waste a moment of time again in my life laying around. 

I had secured a full time job by then and everyday I got up early and though I felt bad much of the time I put in a full day’s work. I made a habit of going to bed early and within a few months I began to feel better.  I can say I have probably never felt as well since that diagnosis thirty years ago than I had prior to getting Ill but I felt much better than I did while I had it so I just moved on.  And since then have come to read a lot more about that virus and the effects it has in the body.  Some of it explains my anxiety disorder but that is another story. 

But I stayed true to my vow for years and got up early each day vowing not to waste time lingering in laziness – I got my life back after all. 

But as I got closer to 40 I began to hate getting up really early and by that time I was working from home so I had some flexibility but I had little kids so there was no lingering in bed. 

My kids came to me though adoption so I only had one baby who did wake us many nights after he came home at 8 months and he had early morning feedings and needs so early was a given. After I became a mom at 37 I was never so shell shocked and so tired.i still wasn’t  a morning person then either but someone else came first. So up I went. It was quite overwhelming and so very wonderful at the same time. 

For years , I did get up early to drive my kids to school, to assemble lunches or to make breakfast for the kids. Actually Kevin did the breakfasts more than I did -now that I think of it. He is an early morning person – the chipper kind after a cup of coffee.  I got up in the morning -but took longer to get downstairs as I wanted to be dressed for the day if I was going to take the kids to school. It was just a thing I had to do.  So Kevin had my bagel ready for me every morning so I could have it in the car on the way to school. 

Their school began at a reasonable hour in private school. In public school they have to get up at the crack of dawn to get their high school bus.  Too early for me. 

And since I was going through cancer treatments and was not feeling well I opted to parent from bed. At first I did get up to eat breakfast while they were readying themselves for school. I wanted life to appear normal even though I didn’t feel well.  But that became stressful as I would just get nervous if they were dilly dallying and I would begin nagging – stressing them out.  So at some point I began to parent from bed yelling or texting my questions from the comfort of bed “is Luke up?” Or “let the dogs in ” ” don’t forget you (insert item name here)”.  Things seemed to go better for everyone most of the time with this system and Kevin was there if he wasn’t training a client   

After my cancer treatments were over  I was so tired and depressed that I began to linger in bed more. I was awake but I just didn’t want to get up    This time I didn’t vow not to waste time. This time I decided to enjoy the rest. I had lived frantically much of my life and still do some BC having teens -well it’s busy. I needed that time to linger in bed in the morning to just be. I had to heal mentally and physically. 

 I began getting up after they left for school. I would have my husband prepared breakfast in the kitchen area ( our kitchen is an area out in the open) with Kevin or alone in the solitude of a house that is void of kids for six hours. Sometimes that’s glorious -that emptiness -and sometimes it’s so lonely. 

Typically Kevin -still an early riser -will get up to train clients in the morning ( he still has multiple jobs – just less of them now) and each morning he makes my breakfast (a fresh egg from our hens and a piece of bread of some sort) and for a good while he would leave it the microwave. I would go out when I was ready and heat it up and sit at the counter. But after a few months of that I decided to take it into my room and eat in bed. It was luxury for me. 

I suppose Kevin caught on to this and he began to ask if I wanted to eat in bed and and now on most mornings he brings me my breakfast in bed.  It’s just a thing a thing he does.  Kindness and caring are in his DNA. He was with me every single day of my cancer battle. Friends said they’d take me to radiation so he could work but he went to every one.  Never complained -he just loved me through  it.  Even in my darkest hours and there were many. 

He doesn’t have to do it- the breakfast thing. He just does. We balance each other well I think. I may not do the same for him -If he were the late riser. I may not make him breakfast in bed everyday. . But I do other things to show I care and to keep the wheels turning in our little family. But he’s a gem and I know it. I’m not trading him in -he is stuck with me I tell him often. He doesn’t seem to mind. 

It occurs to me that I need to start getting up  earlier. Not the crack of dawn but earlier because the lingering in bed has become longer and longer and I’m getting less productive. Some of that is ok but some isn’t because I still have a job and though the business can run some on its own and it has slowed down a lot – I still need to work on it. ( I’m really ready to retire from that job but that’s yet another post). I have gotten into some more creative things like furniture painting  and I find I am turning to those things first when I get my day started late and then I’m flustered later trying to catch up on the work stuff. I see where my priorities are and maybe they need a shift. 

But back to the breakfasts in bed…if I rise earlier will I miss them? Of course! But it’s not really about the getting the food in bed it’s about having a partner in life that is willing to meet you where you are in a loving way and let you know you are good even if you want to linger in bed every morning or scream and cry on a bad day or run in a manic way on one of those crazed days where the mind never quite focuses at all. That person says you are good – you are loved. It’s as simple as an egg and a piece of toast..
    

It’s always something….

gildaThe new year really came in like a steam roller for my family. From the loss of my father-in-law in late December to some issues with my teens to my mom’s back surgery which came just before a blizzard which drove me from being able to stay to manage her care post-op to getting home to deal with two and half feet of snow that hit our area and kept my kids out of school for a week – it has been an eventful new year thus far.

What a difference a week makes. Here we are post blizzard and the roads are cleared, the snow is melting and the kids are back in school (thank God).  My mom has been moved to a rehab hospital in Lancaster, PA where she is making good progress towards regaining strength and mobility. It is a slow process but she is in a very nice facility and seems to be comfortable there. The next road for us is to find a place for her to live in Maryland near us as we would like to have her down here before June. So that means a lot of research and visiting places. Not to mention the packing up and decluttering of her home in PA so we can get that sold as quickly as possible.

I am again reminded by my friend Donna – “It’s always something” – a quote she sent me recently from the beloved Gilda Radner playing Roseanne Rosannadanna.

It is always something.

I remember when I saw the slogan “Shit Happens” years ago on a bumper sticker on some car someplace. I remember thinking how funny that was. But I don’t think I realized how true that was at the time. Shit had happened in my life but up until then the crap hadn’t really hit the fan. As we age shit really does happen and some of us get a lot of shit and some of us are luckier and we get less. But it Happens. What a wise quote – it grows with you – and we aren’t alone because everyone has shit happen! It is comforting in a way – yes?

It really comes down to how we handle it all – right? Some days we want to put our heads under a pillow and not face the day, sometimes we long for a bottle or ten of vodka so we can drink ourselves into oblivion and forget the shit that surrounds us. Other times we stand with mighty fists trying to face down our shit and other times we plod through just trying to get to the other side.

It is always something – it is always going to be something. And that really stinks when you think about it. But it is what makes life life. We are just always trying to deal with – or duck – the shit. Sometimes there are things to be learned from these events and sometimes they are just things to get through- maybe in the end we are wiser,stronger, more grateful, more loving, or we have an epiphany and sometimes maybe we are in shell shock for a while. I was in shell shock after my cancer battle- it took a while to make my way back to feeling like I was living life not just getting through the day. Maybe sometimes we get through but we are left with questions. I know I sometimes just have endless questions and I drive myself crazy with the asking because sometimes there are no explanations.

For me what gets me through the hard times is faith. Orange slushies and wine are a help but my faith in the fact the someone wiser and greater than I has my back is what I cling to when crap hits the fan. (I know some are reading this and wondering how I can write about my faith and crap in the same sentence- well it kind of feels good. And both are part of my life).

Faith may seem cliche’ to many and maybe it isn’t the go to for all of us. Faith is an important tool in my “dealing with life” toolbox. Sometimes when I am drowning in crap I forget to rely on my faith- it is when I am feeling so lost and like nothing will give that some little niggle comes into my head that reminds me that I have a wonderful God watching my back. I may not like the circumstances I am in and I may not get the outcome I pray for but faith is what calms my waters. We all should have some type of go to.

Whats gets us from one end to the other of this life- where it will always be something- takes a good amount of strength and hopefully a sense of humor (and hopefully a go to) because it is so much more fun to laugh than to cry. Have you ever had a good cry and then it pivots into a laugh – maybe bc someone said something silly to try to cheer you up or you are in the midst of a good cry and your dog farts and you have to laugh or urn to another room? It really is so weird – this life. That we can ball our heads off one minute and then snicker like a ten year old in the next.

This life – it can be ugly and depressing and scary and sad and it can be so joyful and gorgeous and silly and light- there is crying and there is laughing – sometimes life is faith and crap in the same sentence. Life is amazing…

and I am grateful for it….well maybe not the crap part…but the rest is pretty cool…