Sidelined -the summer goes on. 

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.

9 thoughts on “Sidelined -the summer goes on. 

  1. janetmbednarz says:

    Hi Anne, thanks for your very honest post about your struggle, I’m sorry you are having such a hard, hard time and that you have such a shitty surgeon. I’m glad you are going to seek the help from other docs. I have to say – it sure sounds to me like the clips are the culprits! Have you ever read any of Ann Lamott’s books? I imagine you have. In “Travelling Mercies” she says that when she was at a very low point in her life and said she couldn’t even pray, her friend the priest told her that she could relax, he would do the praying for her. I think you should know that may are praying for you, and I will too. Janet

  2. Jeez Anne, how dreadful. Did you have lymph nodes removed? I’ll assume that Lymphedema is not your issue as your doctor would have told you. So with that said, I AGREE with you! You could be allergic to titanium clips. Shame on your doctor for having CYA on the brain rather than taking your pain seriously. As your friend stated above, take care of yourself!!! We’ll do the praying for you. Love you, cuz.

    • I’ve been told I do have lymphedema I even have a $7000 pump. But now I’ve been told I don’t have it and if I did have a lymphedema the amount that I have would be something that is not causing this pain this pain is very much like poking in my armpit now and then of course the Twinging across the chest is another part of it -it’s all very strange.

  3. Cindy says:

    Our healthcare system is broken. Doctors seems to specialize in their area and don’t consider the entire person. They are so specialized it is annoying. My husband has been to so many doctors in the last eight years trying to find answers. It is frustrating and hard breaking to wait for appointments only to receive no answers..

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