I’m not even sure what to write here. I’m in the middle of something and don’t have great inspiration or wisdom to share -but I think it’s important to share the truth. It’s not meant as a pity party either. I’m not in need of that. Well,prayers are always welcome. I won’t turn down those. What I want to share is the realities of post cancer pain issues. And the realities of trying to navigate our healthcare system. The sadness at getting blown off by your doctor who operated on you who got the cancer out but began this cycle of pain. And the frustration of so many doctors scratching their heads and suggesting you see another specialist. And maybe this will help one person figure out their issues faster than I’m figuring out mine. 

I wrote before about my challenges with exacerbating pain that is related to my breast cancer treatments that I had almost three years ago.  You can read about that post here. The summer has run together into one blur. Being mostly in the confines of my room each day has made me lose track of the day and date – so unlike me. I don’t do well on the sidelines. I feel jailed in my own body. The only escape is sleep. I’ve had moments of no hope and I’ve been so despondent I don’t know how I would get through the next minute. Then there have been glimpses of hope that have been shattered. At this moment I’m being hopeful without having anything definitive to cling to except that feeling that in my heart I know there is help out there. 

I’d like to report that things have gotten better but they haven’t. In fact they have gotten worse. It’s like I would take a step forward only to seemingly take a step back.  This past week I visited the ER bc the discomfort I’m having left me coughing and gagging and unable to get it calmed down. I can’t really use my arm at all because it brings on the symptoms -which makes things hard bc the other arm has a frozen shoulder. The ER did little but we did find out my heart is doing well. That’s good to know.

Over the last few weeks some good things have happened- some doctors began listening to me and acting like they cared. 

 I had injections. One in my armpit which helped some. Three in my back to help rib pain which helped. But none of it touched the pain that causes the worst of my symptoms. The chest tingling that leads to cough. It makes me feel like I have the flu and when it gets bad I can’t even explain the discomfort. 

   I began to see a physiatrist (a doctor of physical rehab) and after having an MRI of my brachial plexus he called to tell me it was normal but…I was wanting to find hope in that word -“but” …. He said I have surgical clips left in the area that was operated on for cancer.  I found out about these clips after surgery when I began radiation. I didn’t know why I had them. Never thought much about them until Dr. W my physiatrist said that these clips were exactly where i have much of my pain. I call it my focal pain bc once the injections took other pain away it became very clear where my discomfort was originating from. He said these clips might be pressing on a nerve. He added that he had read studies where surgical clips have been removed and the patients pain had abated. He suggested I meet with my breast surgeon bc she put the clips in. 

I had to wrap my mind around this information for a day or two. Could it be the clips?  I began researching this phenomena and though surgical clips which are made from titanium alloy or stainless steel are generally safe and used often in surgery -you can find stories of them migrating to different areas of the body and also causing pain in the surgical area and there are intances where people are allergic to them. Allergies to metals can cause all kind of issues in the body. I do have swelling in that area along with the pain but I don’t know if I’m allergic but I’m going to find out.  I surveyed my Facebook group for post breast therapy pain and lo and behold I found actual people who had experienced problems with clips. I was excited bc this could be the answer to my pain -at least we could find out by taking them out of my body.  Easy solution right? Wrong? 

The problem -the not good stuff- 

My trip to the ER bc I’m getting worse.  

I had a CT scan that my oncologist ordered bc of the pain and it said I had nodules on my lung. I’m told not to worry as cancer numbers in blood are low. Many times these nodules are nothing. Rescan in six weeks. Sigh…

My breast surgeon -who basically ignored my symptoms for over two years and didn’t even try to help much over the last couple months I’ve been suffering terribly –  consented to my coming in to see her after she told her PA to tell me over the phone that the clips aren’t my problem and she wouldn’t take them out. She allowed my visit bc I went to the ER that same day I spoke to her PA – not bc she felt bad for me -but becauseI think she smelled trouble when we called and we asked for my medical records to be sent to another breast surgeon at another cancer center near me. I had had it with my original surgeon.  I will be meeting with this new surgeon in hopes that she will be my new doctor on my case but I don’t hold out hope she will remove my clips. I just think maybe I need to look in the city more where the bigger hospitals are. But maybe she will surprise me.  

 Anyway my old surgeon brought me in ( I smell CYA -cover your ass) and made me meet with the  PA and then bc I had been at my absolute worst mentally over the past two weeks and had expressed this to the PA on the phone before I rudely hung up on her last week -they brought in the social worker to make sure I wasn’t going to kill myself. I told her I wasn’t going to lie to her. That I had been in such a bad place mentally that I sure as heck had thought about it. She brought out the big guns- my children and God. Gee thanks like I hadn’t thought of those things. They are the things I cling to along with not wanting to leave my husband. But  I told her that a 52 year old woman shouldn’t be confined to bed -she asked me why was I in bed and I thought for god sakes lady we just talked about the pain. I’m not sitting on my ass in bed bc I want to be there. I feel like a bad mom and wife. My kids have seen me in terrible pain and in terrible mental states. I try to hide the tears but my house is only so big. I probably have been ignoring God. I’m just mad and sad and in this state it’s been hard to pray. But I try and I have no doubt Gods carrying me through this. But I sure wish he’d get me to the other side soon. 

 I’ve never been in such a dark place. I told that social worker that my surgeon made me feel ignored and uncared for. If she didn’t think it was the clips why didn’t she ever care enough to figure out what it was. She said I was clearly depressed and I said only bc I’m in pain and have no life. Fix me and I bet you see a different Anne. She suggested I may need to take some medication. I told her you can pump me up with Meds but I’ll never think sitting in bed is ok -someone has to fix this problem. I think that the social worker -who really was nice -realized I was getting duped by my own doctor as she began to suggest other doctors by name that might help my case. Once she felt I was sufficiently counseled and perhaps she felt more sure that I wasn’t going to off myself she went to speak to my surgeon to tell her about our meeting. Which means my surgeon just wanted me to get all the tears out before she came into the room. 

So my Surgeon comes in and  basically says she won’t take out the clips bc it could do more damage than I have now. Well now I’m in bed all the time so maybe the benefits outweigh the risks. She presses on my areas of pain the chest and Axilla (armpit) and I’m sure she noticed the swelling -but the sheer pain I’m in on exam should cause pause but nope not her. She then said she wouldn’t do the surgery bc it wasn’t in her area of expertise. She offered no other ideas but she did refer me to another doc. Another CYA move -(I know I sound bitter) so she can say she made an exam an deemed it out of her expertise and sent me off to another doc. This new doctor does happen to be one of the best in Maryland I found out – wish I could have known about  him three years ago. I have a lot of hindsight from this cancer journey but that’s for another post. 

I did like my breast surgeon when I met her and she did her job by getting the cancer out.   I am mad she ignored my complaints for so long. If I had been asked before surgery if I wanted clips in my body I don’t know what I would have said.  But that ship has sailed. Time to move on. No doubt my clips are covered with scar tissue and possibly there are nerves encased in there. This would make surgery more complicated. I think we both are ok with parting ways. 

I never have been told exactly why these clips are in me and I have been asked this by other doctors. I have read about a number of uses for them but I forgot to ask her on that last visit why she used them in me.  Funny that I get the question when it so supposedly so common. I will need the hospital surgical records for this information. I’ve also decided to get tested for a metal allergy including nickel and titanium. If this turns out positive maybe I’ll have a better shot at finding someone to go in and get the clips out and look around for other issues as well. 

To add salt to the wound I did cancel an appt this week with a breast surgeon my physiatrist referred me to bc I didn’t feel like I could make it in the car over an hour to his office  in Washington, DC and my physiatrist warned me that he spoke to him and that doctor didn’t feel the clips were causing all my pain but he’d see me to see what he thought . I was just too devestated by my breast surgeon to go down and meet with someone else only to hear the same thing. It is very hard for me to move. So I need to pick my appts very carefully. I’m exhausted by all of this. And when your in pain it’s hard to bounce from one doctor to the next. 

There is something functionally wrong with me. My arm doesn’t work without causing pain -my chest and underarm are swollen and in pain.when I move my lower arm my armpit tingles.   I know there is a fix. I think what gets me so down is that so many docs want to give you a pill and send you home. I have tried some RX Meds and will use as needed as we find the cure bc I can say for sure this issue isn’t improving its worsening. I don’t think medication and injections are the answer. They can help the symptoms.  I also do realize that having surgery to remove clips can be complicated and it might not be the answer to all the pain  but it’s the best explanation I’ve gotten since I began the search for the solution to my issues. And I am suffering I need help. 

 I’m an outlier. A complicated case. It’s not uncommon for me to get odd things. Years ago I was diagnosed with Epstein Barr virus when it was brand new. I then had surgery for an ovarian cyst which turned out not to be a cyst at all. I had adhesions in my bowel with no known cause. They eventually blamed bladder infections. I worked my way back from Epstein Barr. I was lucky I found a doc to test me it was so new and “I looked so young and healthy”.  I got a rare kind of cataract at age 49. I never thought going into cancer treatments I’d end up with chronic debilitating pain. Frankly I’m just sick of being an outlier. It’s tiring. 

I’m seeing a friend of a friend next week who is an orthopedic surgeon. He’s a great person and wants to assess my situation and see if he can help or find someone who can.  I also called the doctor who was referred by my now old breast surgeon and I have to have my case presented to him by his scheduler. He’s that busy.  I don’t  know how long it would take to get in to see him if he did accept my case.  But maybe he’ll suggest someone else if he’s not interested. I was told by his scheduler that other surgeons in their hospital take out clips. It’s not unheard of she said. I do know of one plastic surgeon where she is that has removed clips.  Maybe I can get in there. The scheduler was pretty shocked my breast surgeon said she didn’t have expertise in removing them. She actually laughed when I told her what my surgeon said. In fact she kind of snorted. “She should know how to take them out ” she said. Well what can I say. I’ve hit a brick wall with her and I don’t know why. Let’s hope some doors are now opening. 

Thankfully, my husband has been there to catch me bc without him I don’t know how I’d be coping. He’s picked up the slack with just about every household and farm thing that needs to get done. My teens are helpful to a point. But I also don’t want them to have extra burdens on them. I’ve encouraged them to go out and do things. I’m sad I haven’t gotten to do very much with them this summer. It hasn’t been easy on them to see me feeling so badly. 

I have a lot of bitterness about this – I’m mad at my doctor and cancer and – well there’s a list. I’m sad that as my mother in laws time on earth is getting shorter I’m rarely able to see her to be a friend and a comfort to her. I owe her that. She has been so good to me. I’m sad my husband has to deal with the burden of an incapacitated wife at the same time he should be spending time with his mother. Being bitter isn’t something I like feeling. It’s not who I want to be and I try each day to stop and try to pull myself out of the muck. But it’s hard. It’s easy to get sucked back in.  I’m not the Anne I was before and I don’t like this version very much at all. There’s a better one inside somewhere.

I am praying that over the next coming weeks we find more doors opening and doctors who can and are willing to help me . It’s hard not to just curl up in a ball and stay inside myself. But I keep picturing me on my horse again riding in my field,me on the beach , me doing something fun with my teens,  me just doing anything besides laying here in bed. It has to be my mantra. These are  the things I think of when the dark thoughts try to gobble me up.  

Just keep going. There are answers somewhere.

It was time. But it was hard. Last week my sweet 91 year old mother- in- law went to assisted living. It’s been a week of transition for her. Leaving her home of over 50 years was very hard. Mom is very friendly but she was never one to jump head on into new social situations. She always had dad to cushion the way for her. And this isn’t just a new social situation this is a new way of life for her. At 91.

For the last four years she and dad have been under the care of their sons. One son left his job to work full time as their caretaker and another two filled in part time. The rest of the six boys helped as needed. It was a good situation but one that went on for much longer than anyone thought. We lost dad last December and since then mom’s needs have gotten to the point where assisted living seemed like the best thing for her to get the care she needs. But it has been so hard to watch this sweet lady struggle with the change.

I wanted to help to make this move easier for her. I have been laid up much of the summer with my own health issues so I wasn’t going to be able to be there for her like i wanted to be. So I decided I could help by getting some pretty things to put in her room. Had I been feeling really well I had visions of creating a room worthy of HGTV. So it was better that I wasn’t feeling well because what a person needs when they move at 91 are things around them that are familiar – not to walk into a room that looks nothing like home.

I ended up getting pretty curtains for her room and some nice bath towels along with some pretty bath accessories. Mom was getting a hospital bed that she really did not want. But I asked her what color sheets might she want for her bedding and she said pink. “I have always wanted pink sheets.” She told me.

So pink it is – along with a pink quilt and some gray sheets just to change it up some. It makes for a pretty hospital bed.

 

It is amazing how homey a couple sets of inexpensive curtains can make a room feel. Everyone walks in and likes her curtains -which makes pitiful laid up old me feel pretty good.

 

 

I wish it was easier for her though. She is going though a very hard transition period and my heart hurts for her.  I know she feels alone but since she moved in last week she has had a huge number of visitors and I know that has been great for her..and her sons get to be her sons again not her caretakers which is so important during this time I think. But the hole in her heart at losing all she knew and also the hole left from dads passing will take a long time to mend. And it might never mend all the way but her ability to cope in her new home might become easier.  At least we hope.

Bedford Court is a very nice place. Independent living through nursing care exists there. When I first visited I was impressed at the decor and the kindness of staff. It is also very clean. I liked that so much care was put into the comfort there. In the assisted  living area it is very nice – they have a bistro and nice dining room that has a club appeal with its blue tablecloths and heavy curtains. But there is a din of sadness that no pretty decor can cover. This is the place the indicates end of life. As much as you try to pretty it up there is that underlying air and mom knows this and I know this – pretty curtains or not. But its what you do when you want to help heal someones heart. You try to point out all the good things and they are good things but it doesn’t erase that this is the last phase of life.

You won’t miss people in wheelchairs stopped mid-roll in the middle of the hall – faces blank or they have fallen asleep. Each time I come I see the same clutch of men parked by a giant TV in the living room area- watching loud western after western – never talking to one and other.  There is a wonderful social director and her sweet pit bull mix Bindy who tries to gather the residents for some social time. I sense that it isn’t always an easy job.  They certainly have a lot of things to do but mom just doesn’t feel like going to any of the events. I see the need – it can stave off depression that can come with isolation.

Despite the realities of the place I actually like visiting Bedford Court. I haven’t been able to go as much as I have wanted but I have always loved older people (I hope I like them when I am one of them!). I was very close to my grandmother growing up and in my early 20’s I worked for a dentist that had mostly older patients. I really loved that job-I became so fond of many patients. Then I became very close to my in-laws. Mom and I might be far apart in years but our hearts are close.

I want mom to meet people and make friends. She has a low voice from Parkinson’s and her dining companions are hard of hearing. It makes for interesting and loud conversation during meals. I asked mom if she liked the ladies she was sitting with and she said “they cant hear me”. I can sense this is frustrating for her- it just complicates the endeavor to connect with others. I feel that sadness. Even in her room we have to shut off the radiator unit if we want to hear her. I don’t now who designed those rooms but they didn’t do a great job of placing the rad. I talked her into putting a fan in her room so the air can still circulate when the rad is off.

I decided to ask mom’s dining companions about their lives- ok Kevin had to ask so they could hear. Moms tables mates Jean – 97, and Talley 93, (which makes mom the youngster of her table) – both have led interesting lives. Both have lived in different areas of the country and world.

Jean – who has the cutest smile ever – was a military wife – they moved 26 times did she say? She said they would just get settled in some new place and she and her husband would say to each other “where to next?” They didn’t like to be any place too long. I asked her how she ended up in Maryland at Bedford Court- and it was just the last place they were living – so Bedford worked for her. She seems not be get to phased by things….I just liked her the first time I saw her. I would like to take their picture.

Talley who is very hard of hearing (she wore her hearing aides just so she could hear mom)is very confident. She is a good person to have with mom. She will talk mom can listen. Talley has a daughter who lives on the Delaware shore. I saw her on moms first day eating in the dining room so I asked Talley a little about her. I found myself enjoying the conversation I didn’t realize mom had finished her meal and was ready to go back to her room.

There is so much older people can teach us. I keep using that phrase on my own kids when I try to share my vast wisdom with them- they just roll their eyes but someday they will get it and I hope they get lucky to have older people they can be close to throughout their lives. I have been given such a gift having had that.

Sometimes it is easy to put older people at a distance maybe because we can become impatient with them or maybe really its because they are a picture of our future selves- but that is if we are lucky to live that long. It makes me think hard how I would like my older years to be if I make it that far. Would I want to be in Bedford Court? At this moment I can honestly say no but it opens up thinking about the possibilities.

I see what is happening with my mother in law. There will never be a time where I am ready to say goodbye to her. There are not words to explain what she has meant to me in my life. But she has given so much to so many – more than we can ever give back. I am just glad there is a sea of people who love her and who want to make her transition to this next phase of her life as comfortable as possible.

We will love her through it.

 

 

 

 

I’ve walked thousands of steps on this lane. I walk back and forth. Back and forth. 

If I can will my broken self outside  and then just put one foot forward and start walking something in me shifts. 

I walk in the evening as the day is going to sleep outside.  The birds are roosting. My chickens are getting their last feed in before they head into the coop for the night. Lately its been the first time I’ve been out in the day. 

Sometimes I walk with Kevin and we talk or sometimes my dog Rudy tags along. Sometimes I walk alone and listen to the noises around me.  The cars, the snort of a horse , a bark of a dog , the din of the cicadas. Sometimes I listen to music. Classic rock to take me back to my younger days. Praise music to help my spirit. 

If I can walk on the lane maybe I’m not completely broken. Maybe there is hope. Being in pain has a way of making you think the worst.  I’ve never been as scared as those times I let my mind race off. 

But then there’s the lane and the two twin fawns and their momma. They stare at me and I smile and I try to take their picture with my phone and my heart jumps with excitement as the babies trot away just a bit leery of me. But we had a moment – it’s a heart buzz for sure. 

Gravel crunching under my shoes – I listen to a tune on my phone from my younger days and I am suddenly dancing a little -as much as my body can allow. 

I want the feeling of being so alive to last. But I know the deal. I’ll need a refill tomorrow night. 

And out I’ll go again  Maybe I’ll even dance.