Medical

Funk

Upgraded tank.

The other day Kevin and I went on a bagel trek to Frederick, MD- its about 18 miles from us.  For some reason the local Panera has closed. I have not been able to find real bagels other than Panera. I am not sure of the details of their closure but I wanted “real” bagels and I wanted to get out of this house for a bit- so off we went.

I know this probably was not an essential trip – though it was tied in with getting chicken feed and meal worms- and I really wasn’t keen on going so far for bagels but we did.  Wanting real bagels is not a real problem – i can hold out and eat toast or english muffins..but for me the bagels are just a way to feel some normalcy again. Get in the car, stop at Starbucks—get a coffee — grab some bagels from Panera– grab other essentials.  On Saturday AM when I realized the Panera closest to us was closed I was bummed because in my head when I woke I had that task in my head. We get to go get bagels. I needed to feel “normal”—so we went a bit further to Frederick to get them.

What is not normal is that when you leave your house you now carry a face mask, maybe protective gloves, you probably have hand sanitizer in your car and some lysol wipes or something like that.

Sometimes it can almost feel normal on the way to run an errand. .Kevin and I can chat and listen to music. We notice the lack of traffic but we can be in a bubble for a while that feels almost normal.  I love that feeling! But then we pull up to the shopping center and there is a line at the Aldi’s grocers. People stand six feet apart, donning masks (some gloved) all waiting their turn to get in because now we cannot just walk in to a store – there are limits to how many can go in- if you can go in at all.

At Panera a few doors down from Aldi- they are doing curbside pick-up.  It is convenient- but so impersonal. And it has to be for everyone’s safety. It sucks but needed. I thanked the young woman who handed over the bag of bagels to me. I had my mask on because she came to my side of the car. I tried to look grateful with my eyes as I told her to stay safe. I then complimented her on her mask fabric choice. It was cute…. but then I said “I can’t believe I am complimenting you on a mask”.  She said ” I know crazy , right?”  and we went on our way.

I am not sure if my funk began then because this is crazy-  or maybe it had been festering over these last couple weeks.  Things feel off for me.  Maybe it is because I am so over this whole thing – but I know this virus will not be over us for a good while.  We also found out my son in the Navy has been quarantined with his division because someone got Covid-19. My other two kids are out of work because of the shutdowns. Also, my horse is acting a bit off.  And I setup a new bigger fish tank and transferred our current fish- which were Navy son’s- and two didn’t live- too much shock. Such a small thing – I know. But flushing those two fish just made me feel crummy. Who knows what pushes us into the funk. I mean the virus is enough. Seeing the suffering is enough.  There is nothing I can do to stop this thing. Lack of control is scary.

I think maybe it is really dawning on me that the world as we knew it is now gone – and life has changed for good.  Like my life before and after my cancer – there is a definite division.  At least for a while things will be quite different for the world  in how we interact in public.

It is hard to watch the suffering every day. It is hard to feel at the mercy of something you can’t even see.  What will the toll to human life be?  There are so many ways  this virus can devastate us including death.  We see the toll rise each day.  And there will be a balance on how things progress to reopening – so we can hopefully live life again- on the other side of the divide.

So today I am in a funk. Some days it is just really hard….its normal to feel these feelings. This isolation takes it’s toll. The financial worries take their tolls. If you are feeling badly never be afraid to reach out to someone for help.  Even a chat with a friend can be comforting.

I do understand that this has happened before over and over throughout history – we have many before’s and after’s, the Spanish flu, world wars, natural disasters , 9-11…. We are human- and we adapt.  But it is jarring and a change – a new shift in what we knew as reality. So it is stressful and scary. And on some days very overwhelming- I just want to pull the covers over my head and sleep- so I can forget for a while.

Instead, I write.

 

 

 

 

Some improvements in post-cancer care – and with me too…

If you have read my past blog posts you know I have dealt with four surgeries since fall of 2016 to deal with the pain I ended up with after breast cancer treatments.  My last surgery in Feb of this year was a grafting surgery and it has involved a long recovery mixed with many months of PT.

So here I am almost 6 months out and I have been working hard in PT to get this arm moving. I have found an incredible PT team that is well versed in my issues and have been specially trained to deal with them. The program they follow is called ReVital and it is a Rehabilitation program for cancer patients.  It encompasses many forms of rehab- not only PT. Though some cancer centers already have rehabilitation in house some don’t and these participants are highly trained to deal with many issues during cancer treatments and well after.

There are so many facets to cancer- – fighting it being one – recovery being another – and  the during treatment and post cancer issues like pain, depression, fatigue, disability etc being another. For so long this latter facet has poorly addressed. But I am seeing and increase in available resources including rehab and also more written about post cancer pain- this implies that more cancer doctors and  pain management centers are becoming more aware of the issues- and the reality of the problem being acknowledged. In addition the cancer doctors themselves are also learning that their patients need to be fully served when they are facing cancer treatments and they are beginning to understand the potential residual effects that these cancer treatments can impose on patients- sometimes symptoms showing up years after treatments end. So now we see more of these docs being proactive in having the ability to refer a patient for help when they begin to complain about their issues.

This is a big deal for many of us who have had to go to plead their cases to doctors who couldn’t understand why we hurt so badly after our treatments. We weren’t supposed to complain. We were supposed to be happy to be alive. And we are- but we need to be heard and believed when we say we hurt after our cancer treatments are over.

I made a mistake after my treatments ended I should have gone right to PT- I did go when I had an odd and very uncomfortable nerve pain show up basically over night.about three months later. Would my pain issue have not occurred if I had don PT before that nerve pain reared it’s ugly head? I don’t know. But I thought when I had ongoing issues that my docs would have had my back. But after PT the issues persisted  on and on and my cancer surgeon scratched her head and kind of pushed me off into the unknown to try to find someone to help me figure it out. I went to numerous – like a lot- of doctors over the following couple years and I got nowhere.

My world came crashing in midway through 2016 when my pain hit an all-time high and I was bedridden. Many doctor doors closed on me then, too many. I felt more alone then I had ever been. I was at an all-time mental low. Then finally when I yet again went to plead with my cancer surgeon for some help and she treated me literally like I had a mental issue and not a pain issue that was the last time I saw her- and I went home despondent.  I was in a very bad place. And it took prayer and tenacity to keep going and finally I found doctors who wanted to help me. Who weren’t afraid to try.

Nobody should have to go through that!  Before cancer I didn’t have the pain – after I did.  Radiation damage is now recognized and talked about in the cancer community and the fact that it can pop up soon after treatment or years later is being discussed more in-depth.  Chemo causes its own long term effects.  We are warned of some of this before treatments begin. Like deer in headlights we are frozen and see the treatments as the only way to get safely off that awful road.

In my hindsight world I would have not gotten radiation after my lumpectomy. I was early stage. Did I really need it? Maybe I would have gotten recurrence in that breast- maybe not. But the pain I have suffered since my diagnosis – 6 years ago now- has been very very hard. And there have been times I had so many dark thoughts. Looking at it in the rearview  -I think I would avoid radiation and take my higher risk of recurrence (because it exists anyway) to avoid the pain. But that is what I have learned and sadly not what I did.

It may be that we who suffer severe pain from our treatments might never find a life that is actually pain free. But what we do need is the support of our doctors when we find ourselves in this very difficult spot. We need medical professionals who can help try to get us to the best version of feeling better that is possible.

I thank God that in the 6 years since I was diagnosed that we are seeing these improvements in this area. I think the surface is only just being scratched and there is so much potential in this area of patient care that I hope we see more and more improvements in the years to come.

As for me – I have made some good progress since this last surgery.  I have been in PT since mid-April and I still have pain but my arm range of motion (ROM) is vastly improved. We have hit a point in trying to improve my ROM where I am getting more pain flares.  I won’t go into all the medical reasons why but they PTs seem to think this is ok. For me it is easy to get nervous and discouraged. It is so easy for me to want to NOT move my arm – or do my exercises – but I force myself.  One thing I seem to do on a regular basis is to overdo things and get pain flares. Many times I don’t even know what I did to flare – that is frustrating.

But I move forward in fits and starts.  We joined a health club with a pool because I have a rekindled love of the water. I was able to get into the ocean and past the breaks in the surf. I did get pummeled by a wave once – that brought back memories. I have kayaked using the paddle sort of- I suck at it – I am very glad to have peddles at this juncture. I have been in the gym doing light workouts and I have ridden my horse. But I have also had a number of pain flares that side-lined me too. There is no straight path and I really still have no idea where I might wind up and I don’t think my forty PT visits my insurance allots is going to cover what I need. So I hope they will extend me.  That can be a battle too.  I have learned not to expect smooth sailing. But I am ever so pleased when something does go smoothly.

Before cancer I was in great shape.  I was strong. I looked fit. And now… well my version of strong has changed- but I have goals – but they have no end dates- I just keep extending them.  I am trying not to be so vain too. I am hard on myself for gaining weight, for aging…I need to give myself a break. I am trying. Trying should be my middle name. I am always trying- even when I don’t think I can move my feet out of the concrete- somehow I just keep trying. …I don’t know where I will end up but at least I keep trying- and that is not a bad thing.

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This is in early July. I have even more ROM on the right side now. This was an exercise that did flare me up. When I began PT I was at about half this range.

Ups and Falling Down!

The other day I took this picture:

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When I see this photo I see accomplishment!

I was trying to mark a milestone.  I had just accomplished the feat of taking the wheelbarrow out of the barn and rolling it along as I scooped up horse manure. This may sound super boring and probably an unsavory job to many people but it is a job that I happen to like – you can get a lot of thinking done when you scoop poop- and you often have the company of one or more farm animals. I have been unable to do this job for quite a while because of my chronic nerve pain in my arm and back.  So I was having a “look at me ” moment.  I thought if the nerve pain didn’t flare up too much the next day I would post this photo and brag on this accomplishment.

But then this happened!

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Do you like the dog as prop in the photo?

This must have happened because I was so full of myself from picking up manure! I was in the chicken yard grabbing some items I left in there and I turned caught my foot on the hose as I was stepping forward.  It was one of those falls where you think you have caught yourself and you expect to be upright but you end up on the ground. I landed on my side and my rear – and on my non- nerve damaged side. Thankfully.  I had to make a nice turn to end up that way. I do think one of my guardian angels helped that move because I don’t know how I landed like that.

On the ground my first thoughts were “did I land on a chicken?” (I didn’t – they all ran far away – chickens!) and “ouch my ankle” and then “this is not going to sideline me”. NO No no!!  The next thought was me wondering if my cowboy neighbor who was out feeding his equines saw me fall. (Kevin was nearby but on a loud tractor mowing a field).  I did not want my cowboy neighbor to see me on the ground! It is bad enough that I need he and his wife’s help for all kinds of things (they are young and able!) but I didn’t want him to have to come ask if I needed help getting up off the ground- I would feel ancient.

So I took a deep breath- assessed the damage and hauled myself up off the ground.  My left ankle was tender. But I was ok…I was not in that much pain–lie lie- I was. But I went over to finish some things for the horses including some brushing all the while hoping they didn’t knock me over!  I just could not fathom that something was going to take me down for the count. But I knew I needed to assess the damage to my ankle – both ankles hurt but the left seemed to be getting worse by the minute. So I went into the gym part of our barn and I took off my boot. I could see where I twisted it. Not too swollen.  Good.

I had twisted this ankle before years ago leading a horse down a hill.  But this fall was worse- it hurt much more! I was a bit worried but I waited for Kevin to get off the tractor so he could take a look. He thought it was a sprain -but because it was getting more painful pretty fast we opted to go to the urgent care for an x-ray.  It didn’t take long and they were fairly certain I had no break – but gave me the films with instructions to see primary or ortho as needed – and they locked me into a boot that felt like a ski boot and off I went.

I will admit to moments of self pity and negativity.  I am just beginning to get back in shape and being able to do more things and I did not want this to slow the progress. And I was back needing someone to help me – poor Kevin has had enough.  But I decided not to make it bigger than it was. It is just a sprained ankle. It will take time to heal but maybe I can work around it some and keep moving some.

I got home and broke out of that boot and iced my ankle all night.  I woke up with pain the following day but it seemed less than the day before which surprised me but gave me some encouragement.  I still felt like I needed the boot because I did want to try do something constructive with my Saturday. We always have a list miles long of things that need to get done. I was in the middle of spray painting a wrought iron table I picked up for $50. I wanted to complete that project. So I put on the boot and Kevin covered it with a trash bag and I got painting.  I was able to stand just fine and after a while I became so involved in my work that I forgot I had a sprain (and nerve pain for that matter!).

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Spray Painting!

Today I woke with less ankle pain again. I am paying for the spray painting with some nerve pain in my arm and back but I expected that.  I still can’t move my ankle certain ways. I feel like the foot needs support.  I had taken a knee brace and somehow made a foot brace out of it and that was providing support. The boot seemed like overkill. Today I went to the drugstore and grabbed a couple ankle compression bandages and an ACE wrap. I will keep some form of protection and compression on for a while. I think this is going to heal sooner than later if I can keep from aggravating it. I can see how I will still be able to do most things. I just need to elevate it some each day.

Well it is funny how one minute I was so excited about picking up manure and the next I was flat on my butt with a sprained ankle.  That’s life . You just have to take your joy moments and appreciate them. I will be back picking up horse manure again soon enough.  I am grateful my PT is going well and  that I am doing things I haven’t done in so long. I have hope!

 

 

 

 

 

 

 

 

Recovering kind of….bites

Well I am into my second weekend post surgery. I am healing. If the itching is any clue then I am healing well! I have gone from pain drug nirvana to non-pain drug – well lets say discomfort – as well.  I am not a fan of pain meds. Well…not true… I am a fan…they work and make you feel ever so spacey and dreamy. I slept so well on them. I take 1/6 the prescribed dose as well but I still felt if I am not in a lot of pain I would not take them. Still the discomfort makes me less mobile and well maybe that warrants a reason to take some. But I don’t- too much fear I suppose.

I get the drain out on Tuesday and I will take some for that procedure. It isn’t fun. But worse is having the thing in. It has been a – I really want to write shit show here- but instead I will say a tad of a pain – literally and figuratively to have this drain. If you don’t know what a surgical drain is you are lucky and look it up bc I don’t want to explain it more than needed. But my lovely husband tends to the drain upkeep – God love him- bc if I had to I would puke I think – I think this is because it is all happening in my body and I would like to ignore it as much as possible.

The drain is a pain. You are carrying it all the time- this appendage. Showering is tough. I shower in a tank top so I can keep the bulb pinned to something so it doesn’t hang down. Then I get out of the shower with a soggy ,dripping tank top on. It’s fun!

The drain also sprung a leak twice this week. The first time in the middle of the night. I woke Kevin but I really don’t like to do that since he is caring for everything (Me, my mom, and household and farm stuff ) all day. I want to grant him some decent sleep. Though I think almost nightly this past week a dog has also woken up in the middle of the night and either needed to go out, puked or pooped somewhere in the house. Which got Kevin up. Anyway I woke Kevin to fix the drain – I said sorry with my nicest voice. It wasn’t anything I could do alone.

Calling the surgeons office about the drain problem rendered an answer that this was all normal. Really?  I have had them before and never had anything like that happened. I will say it is  not a fun event and the second time it happened it ruined a new shirt – I should not have put it on I know…I take full blame but still grrrr.. and ick. The drain remains painful as the incisions heal and there is less drainage…so think a couple chopsticks lodged up inside your armpit..right… feels great!

I hear you saying – why won’t she just take a pain pill…I know, I know.

I have come to realize that five days is my limit after surgery. Five days to keep a good attitude – like I got this! attitude (and I am normally still drugged at this point), and its five days that I think I should be feeling well and start to feel guilty that I am not up and around feeling good. I have walked once, done squats and lunges – all probably too soon. The walking was ok but the second drain issue occurred just after that. So now I am waiting two more days until this drain comes out to do anything physical. But five days is my limit and then I get cranky and frustrated.. not the best look on me.

I have no idea how the surgery has worked. It is a 4-6 week recovery and 2 of those are supposed to be off work. So it’s going to be a while. I am supposed to start PT around week 4 – but I am hoping I can do some lower body stuff next week.. I dread PT. Thus far PT has been so crummy for my arm.  Maybe this time will be different! It all starts with ATTITUDE! Rah Rah! Haha…

I have found this time around that there are some items that I have come to rely on during this recovery. I know I am bored if I am keeping tabs on this stuff! Sorry for my ramblings…just needed to write.

First and foremost – a back scratcher. With 12 plus inches of scar and a dumb drain -things get itchy. For some reason this time they sutured up the skin – maybe because it is a graft and then they put this clear large adhesive covering over the entire graft and same for the donor site on my back. And this covering is tight! But it allows me to be able to shower normally so I guess thats good. But as I recover the itching is soooo intense…so the light touch of a back scratcher is wonderful.

Next is medicated chapstick – well this is a must have always but for some reason I am very needy of my chapstick as I recover. And at this minute I just looked for it and can’t find it- so now a search will need to be set forth. Note to self- get more than one medicated chapstick at a time. I picture it chewed up in some corner…dogs…nope FOUND it! yes!

Gauze and bandaging- I go nuts sometimes at the drug store on first aid items. Having kids and also having a small farm where we get splinters, blisters, step on stuff etc I am super paranoid about first aid.  I now am so happy I did over-buy because gauze and tape have been needed for this stupid drain.

Pill cutter-this is awesome- I got it as a parting gift after my one night stay in the hospital – where they were very good to me and to Kevin who also stayed the night. Yes I got parting gifts I was so excited! The pill cutter is the bomb and will go into my newly organized linen closet. I got bored the other day and had the fixings to redo the closet later in my recovery but I found I could sort items that were in the old crammed bins easily sitting on the bed – so new organized closet done. Anyway a pill cutter that cuts like butter is a must for your medicine cabinets.

I thought the the exhaling thing the hospital gives out so you don’t get pneumonia was cool but I got bored of it after two days home. So though helpful,  I don’t see it as a long term medical item that I will keep.

Oh and of course I got to keep the hospital socks. I have tossed out too many of these things over the years but they are great as a no slip alternative to slippers. Why are slippers called such? I know bc you slip them on- but they aren’t the most safe shoe!

Ice water has been another must have and so the trips to the bathroom are frequent…which is annoying!  I am one of those people that have to have liquids with them where ever they go.  And I mean I even carry bottled water into restaurants. Once I was even told by a very stern server at one restaurant we go to I could not have my own bottled water that I brought in because some people bring vodka inside the water bottle and get a glass of ice and drink their own alcohol. Is this really a thing?  I know teens do that stuff but I am not a teen!  I seriously just laughed as I was typing this! Crazy!

Last is magazine, puzzle books, and laptop. No explanation needed here.

Oh gosh and finally- my adjustable table – that allows me to reach all this stuff I listed – and my meds, and books and laptop etc! The thing is the bomb. Such a nice item when recovering from surgery or even the flu.

Recovery is just a process. And I am so impatient. I know with a surgery like this the benefits will hopefully show as time goes forward. Now I just have to take it a day at a time. I have just had more than my share of surgeries. I am sort of done. I hope this is it for this problem.

Well I brightened my day just by writing this. Nobody even has to read it. I just feel somewhat better. I think I will walk to the barn.

Think of me Tuesday at about 11:30 as they remove this drain. (But probably nobody is reading this by this point. I likely lost them at chapstick.) Oh well! I’ll be brave!

My closet- so proud
More closet
The tray and all my stuff

 

Valentines Day Surgery

Not many people would opt to have surgery on Valentines Day but I did! I had one on my 18th wedding anniversary and had cake when i woke up. So maybe tomorrow some sweet confection will arrive at my bedside providing I can keep it down.

Tomorrow I will have another surgery to attempt to improve the pain I have been having for five years as a result of my breast cancer treatments. This one is actually removing my scar which is damaged by radiation and keeps getting stuck on my chest wall which we think is causing some of my nerve pain.  Part of my back fat(I have plenty of that!) and skin and blood supply will become part of my armpit. Its amazing to read about -Tdap flap -as it is called. Usually it is done on the breast as part of reconstruction -but these flaps are now used all over the body to relieve pain from scars and improve range of motion where applicable.

My new plastic surgeon for this surgery-  Dr. DC – is not new to me really. I have been seeing him for cosmetic things for a few years. And he is aware of my vanity and my pain issue. He just happens to work on a continuous basis with cancer patients. He firsthand has seen the damage radiation can do- he’s seen a lot.

Most of us with breast cancer even early stage like me are given the warnings about side effects from treatments  – but still have the treatments bc it gives you some sense of control during a time when you feel very out of control.  And most of us don’t have too many issues after radiation – some of it is short lived and some shows up years later. We don’t know who will end up in severe pain as I have. But my pain issues have a trajectory and I am beginning to piece things together but It is really of no matter because I can’t go back and change things. Hindsight is 20/20!

Anyway Dr. DC is a great person and a top doc. I will miss Dr. Williams my nerve surgeon as he has been the lead or assist in my last three surgeries.  I am just used to seeing his face in the OR and I trust him. He doesn’t work out of the surgical center I am going to. But he has given his blessing on the approach Dr. DC has in mind – so here we go.

Nobody on this journey wants to have multiple surgeries. I don’t crave going under the knife or the 4-6 weeks recovery.  It is when you live in chronic pain that you realize how much life can be taken away just by a bit of pain – like say in the armpit – and you search for some relief.  Thats what I have been doing.  I don’t write about it all the time anymore because that just gets morose.   When someone starts the cancer fight people tell you or  post – “you got this” , “be a fighter” etc. But after a while people have to go back to their own lives and you are out of focus – and this is how it should be. Now I am sure people think – “Anne is having another surgery?”, “Oh poor thing”.  LOL I get it. I wouldn’t understand either- and I am so glad most people don’t get it because  that probably means they aren’t in terrible pain day on day.

I have been cancer free for five years! That is a huge milestone. And praise God for that. My oncologist pointedly told me not to get too comfortable with this milestone reached – because the cancer can come back..Yes gee thanks Dr. HH – I don’t have a false sense of security but I certainly am trying not to wake each day with a sense of panic – I did that for long enough- so let me have some serenity- stop trying to burst my bubble. I live with freaking chronic pain. Isn’t that enough! Reminder is there daily- thanks!

I can say that I am much better than I was almost 3 years ago when the pain was so bad i was bedridden. For that I am thankful. Dr Williams got me this far. This time around I think I would like to be able to lower my dosage of the nerve pain medication I take.  Which I can only do if I have less pain. The meds leave me with low energy and some other side effects that get tiresome- esp weight gain. My doctors would like to see my arm work better and my range of motion improve. So we will see. Sometimes you just got to do what you just got to do!

I am off to eat some cheesecake. We had an early Valentines Day lunch today and we took the dessert to go. I will also be eating again around 11:30pm because I don’t do well fasting at all- and I especially don’t do well when the surgery is late afternoon as mine is tomorrow afternoon. Thankfully I can have some water 4 hours before surgery. I am sure this is so they won’t tear my veins apart trying to get an IV in! Been there! I am bound to become somewhat hangry by 3pm- maybe they will drug me up prior – or drug themselves! Hangry on me isn’t pretty! Bless those nurses. They will be probably be shoving some food into me when I am in recovery!

Happy VD Day ❤ (Send some good vibes out for me tomorrow if you think of it!)

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In January I went to the National Aquarium in Baltimore, MD. It is a spectacular place. They had the Jelly Fish Exhibit and it was really cool. Don’t these look as if they are lighting up from inside?

 

Clearing my mind

The last few days I’ve felt a growing sense of anxiety. So much to do. Worrying about things I can’t control. And worrying about things I can.

Will I be able to physically do the things I need to get done? I am hoping so. A visit to my surgeon a few weeks ago ended with him draining another couple cyst like things from my axilla and giving me a nice big steroid injection and so far I have had some relief. Still I can’t do many things I once could. And still I push to do as many things as I can. So much I leave in others hands. That’s hard for me too.

I think the issue is also mental. I forget so many things. I get overwhelmed and I get mad that I forget things. I forget to check my calendar and my notes app where I write so many things.

Today the cell phone repair guy showed up around 1pm. I had completely forgotten he was coming. I hadn’t even checked the calendar and I had put something else as a priority. Thankfully we were home. He came for my sons broken phone screen but if we hadn’t been home he likely wouldn’t have heard the door. Well anyway that worked out.

Other days I don’t get so lucky and one thing or another is forgotten or lost or a new fire shows up that needs to be put out ASAP.

My mind needs a break.

Yesterday wasn’t rainy – as so many days here seem to be. It was breezy and cold but sunny so I took off to walk on the lane to clear my mind.

It takes me half the walk to stop thinking about all the crap that I need to get done. I stop along the way and take photos. I listen to the shifting breeze. I listen to the quiet. I play some Coldplay on my phone for a bit.

I brought my dog Rudy and I watch him Focusing himself on the walk at hand. The smells and eating gross things. He just is in the moment.

And finally so am I. I feel the angst leave even if for just a while. My spirit lifted.

I have more energy for the day. And more patience. I feel happiness. I get a lot done.

Why -I think to myself – don’t I just get out and get into the natural world every morning. I need so habit. Something that centers me. Otherwise the day gets away from me.

My thoughts are not like they once were. They used to be in order – do this and then this and then that. Now they can start anywhere. It’s the difference between a straight line drawn on a board with a few blips, and squiggles drawn all over the board. My mind is squiggles. Maybe this is the meds I take , aging , a result of all the surgeries I’ve had to have over the last few years – who knows.

Anyway Clearing my mind helps get the line straighter.

It’s just a matter of making that a priority.

Learning Acceptance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And there is some excitement in that for me.

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?

Goals. What you picture. What is real. And lollipops.

Almost 6 weeks since surgery. I had forgotten from my first surgery what recovery was like. It’s a roller coaster. I’m doing more at six weeks post surgery than I did last time. The surgery is a tough one.  But I think I pictured a more pain free existence. I know I’m not going to have no pain there’s sooo much damage from radiation. But It’s better -don’t get me wrong – and maybe it’s because I’ve had a couple of rough days this last few days that maybe I’m feeling a little down.

 I was down at our new beach house a couple days ago and I was walking my dog Rudy. I must have been walking him with my right arm -the recently operated side- it was an unconscious thing- he must have pulled my arm which for me is like a big no no. Thankfully it wasn’t a hard enough pull that I really remember exactly when it happened. I remember mostly walking him with my left hand but we did come upon another dog and maybe it was then that I grabbed the leash with both hands and got pulled. I didn’t have the leash put in in its anti-pull setup. I bought it just for that but I was only taking him for a quick pee that turned into a walk to the bay and on the way back is when we met with John our neightbor and his dog Abby. So my bad. And later after a nice nap on the couch in Cool Breeze Cottage family room I woke up with lots of pain.  The burning pain and  radiating pain that makes me cough. The thing that I’ve wanted to be rid of but doesn’t seem to want to leave. It’s deflating. But likely due to radiation damage. 

I saw my surgeon last Thursday and he’s pleased with my recovery. I think he’s surprised that I don’t take more pain medication but I do take enough just so I can get out an about. I have been hoping that the need to use it will abate as I heal more. I’m to begin working on more range of motion exercises which I fear will bring me the pain I’ve had since the pulling incident a couple days ago.  But I can’t be afraid because there is the thought that more range of motion might alleviate some of the pain-eventually. Much of my pain since the first surgery that removed surgical clips is related to scarring and to nerve damage from radiation treatments. The damage tightens skin and tissue and causes entrapment of the nerves….and the nerves get damaged from radiation as well.  

Why I have such a severe case is unknown. But the long term painful effects of cancer treatments are really just being studied.  In many ways I’m a guinea pig every time I go under the knife and entrust myself to the skills of my nerve surgeon. My surgeon continues to suggest things we can try in the future. Fat grafting is one. It shows much promise. But it’s hard for me to picture my life like this. As a person with chronic pain.  Overall I’m much better than I was but I am afraid to get too optimistic. I am also bummed that we can’t solve the issue that makes me cough but I think we are getting closer to the cause- but fixing it may not be possible. Managing it may be my only option. 

Last Thursday I was feeling good. Then The dog pulled me and I feel like I went backwards. This has happened before- a few weeks ago when I overdid range of motion exercises. I recovered and continued healing. I got down then, and I felt the same fear then that I have now. That fear that I’ve done some damage to myself and it won’t get better. I don’t want to feel so negatively but it’s so hard not to be sometimes. The last four years have not been easy and the last year has taken me from someone who could walk out the door and not think a thing but whether I had my sunglasses to someone who has to worry about whether I have my pillow -which I need because I can’t sit without pain if I don’t have it-, whether I have pain meds with me, or if I have an ice pack or heating pad. It’s not what I pictured my life would be. 

I picture my life much differently. I see myself more free and more pain free. Then there is the reality of the now. I still feel sidelined much of the time.  I have to meld what I picture for myself to the realities. I know that we can have plans for ourselves and life will often take us on a different path. I will keep the pictures I have in my head as eventual realities. They are goals. They keep me going. Maybe they will be but not exactly as I picture. Coming to grips with the realities of what life is is very hard for me. On days like this I feel sorry for myself. I cry. On days like this I know I need to get my butt up and do something. Even if it takes medication to get me moving I need to do it. 

The other day at the nerve surgeons office I saw a young girl. She was from Israel. She was beautiful, maybe 25. She was with her translator. I was standing at the snack counter grabbing a lollipop – my surgeon always has lollipops-the good kind-Tootsie Pops. I offered her the container she shook her head no and smiled. She stood up to leave. She did well standing on her two prosthetics, happy, bc whatever procedure she had that day made her pain free. It wouldn’t last it was just a diagnostic procedure, but her smile was beautiful. I knew from chatter in the back office that she had been the victim of an IED explosion as she was traveling  in a bus- lost the lower part of both her legs. Seeing her was real life smacking you in the face. I wanted to hug her but offering her the lollipop was all I could do. You could see she was a girl who didn’t want pity -she just wanted to be rid of her pain. 

 Perspective. 

I thought of her today as I was writing this post. We all have to wake up with our realities. I think I’ll get myself up and go live my life and deal with mine.

It’s all in your perspective.  Sometimes my day sucks but I have a choice what I’m going to do with my day.

I’m going to try to go to the garden center and buy a perennial for my cleaned out garden bed….

I’m pretty sure that I’ll think of that girl often.

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. 

😘😘