Month: July 2016

In my dreams

In my dreams I am whole.

I walk the beaches of the world and I hear the roar of the waves and I smile.

In my dreams I  can hold a child and carry bunches of flowers miles and miles.

In my dreams I can ride my horse and brush him. I Fly across the land on his back arms spread wide one with the air and sun.

In my dreams I am free. I can run and touch the moon and the stars. There is nothing to hold me down.

In my dreams I feel love and happiness -no pain and sorrow.

Then I wake-

The shadows of sadness and pain dive upon me before I even shed my sleep haze.

My heart crushes as the walls close in.

I feel like I can’t breath. I’m trapped in myself and all the freedom I felt in my dream is robbed from me.

Another day. The same thing. Physical pain and sadness.

It’s a lonely place and I’ve never liked loneliness but it’s not unfamiliar -I just thought I had escaped it long ago.

I try to read but the characters in the book are living life -I’m not  – it makes me cry.

On tv a woman holds a puppy – I can hardly brush my own hair. I couldn’t carry a puppy.

I feel like I’m disappointing everyone. Despondent mom, wife and friend.

It seems to me that some doctors think it’s ok for me to live like this.

It’s not ok for me. It’s like my world has shattered and I can’t pick up all the pieces.

People walk by and hand me a shard or two and think they’ve done a good thing for me.

All I see are the rest of the pieces on the floor with no way for me to pick them up.

I once would have tried and succeeded at picking them up but now I just can’t find the strength.

I’ll never be able to put them back together alone.

The sadness overwhelms me and I long for answers.

I long to get out of the box I’m in. I am sad and afraid. I want to claw my way out but I’m almost out of hope that I can.

I just want to sleep.

I want to go back to my dreams.

Surrounded by Dogs


It’s not often that I don’t have a dog or two -or 5- near me. One could say they must follow me because I have food -and I sometimes do but I often don’t and I don’t share all the time. I also am not the person who feeds them most of the time.  My husband and my kids do that job. But our dogs (my dogs) are my comrades. Lemon our yellow Lab prefers the company of my son -Luke- and I am her second choice when he’s not home -I love their love for eachother.  The other pups -my boys-are my shadows much of the time. One might move to a cooler place on the floor in the hallway outside my office or bedroom- but they are always near me. Is it because I’m their leader? Am I their leader? I don’t know what they think. I’ve always had a comfort being around animals especially dogs.  But my husband always is amazed that they follow me around like the I am the Pied Piper. 

It’s something that I don’t take for granted -this affection – but it is something that I’ve come to be used to in my daily life that I don’t always notice it. They are just there. And I need them to be there.  Dogs have been a calming force much of my life. When I felt alone or scared at times in my life there was a dog there to comfort me. They were my PTSD dogs long before there were such a thing. 

We usually are all quiet as we sit in our spaces either in my office or in my bedroom –  Unless the UPS man comes. Then it gets a little wild. 

In the last couple of months I’ve been out of sorts. My spirit is down and my physical body is in pain. I’ve waxed cranky and sad and sometimes downright angry. There have been days where I felt like there was just too much dog near me. I felt crowded impatient and claustrophobic. I’d shoo them out of my space.  It really wasn’t them at all – but yet in my angst I’d push them away.  

 I’d shoo them away -but they never went very far from me. They might lay in the hall or go sit by my husband or ask to be let out. 

 My old English sheepy -Ridley just doesn’t understand cranky or mad. Or the word shoo or off. He doesn’t leave when asked and in fact comes closer to offer his head for pats. Rudy is like glue to me. He doesn’t shoo he just curls himself a little further away to give me space. 


When I’d get back to my work or stop wallowing in my crankiness I’d notice later the dogs had moved back in closer. And I realized that I didn’t feel claustrophobic any longer. I’d feel a sense of calmness and I felt cared for.  Loved. 

This pattern has continued and as I looked around me today I realized that they may know what I need better than I do myself sometimes. 

It’s what comrades do for eachother…..

UPS?

Figuring it out. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

——

Info on PMPS:

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

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

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

No way to understand 

It seems we are getting the bad news of mass killings and violence  on a daily basis.  You don’t have to watch the news to get this news. In fact it’s sometimes hard to get away from it. But I am afraid the world will become numb to this violence. The massacre in Nice on the tails of the shootings in Dallas and other areas and today in Baton Rouge ( this happened after I began writing this post) – it’s getting that frequent – it’s mind blowing. How many times can our President get up and speak without sounding redundant?  

Some of these shootings are terrorist in nature some retaliation. I don’t want to become numb to these horrible things. I can’t turn on the TV and let my brain absorb this awfulness without it hurting my heart – So often I turn away and will myself to numb my own mind to save my heart and ultimately my soul. 

I’ve firmly believed that love is stronger than hate and that  hate is loud but love always wins. I imagine if you are one of the family members who lost someone in an act of violence you might not agree. And sometimes I think my feelings are naive. But I don’t want to give up on love. 

I was told love was all that mattered when I sat in the pit of hell after finding out I had cancer. Those words popped into my head like water rushing over me. I’ve always felt like it was God who spoke to me. I got up and faced my cancer  and never forgot those words. I’ve been tested since that day with my own personal issues and then I see what’s going on out there in the world and I wonder sometimes. -Really is love that strong? If love is all that matters why can’t the haters feel it? How can people not get this? But even my own feelings and emotions can vary from one day to the next. I can say love is all that matters but I’m not loving all the time. 

I may be living In Fairyland sometimes when it comes to love but I don’t want to give up on that voice that was so clear -“love is all that matters”   

In the animal world there isn’t hate. There is lots of death. They eat eachother. We eat them. But in an animals world I don’t see hate. I see fear and survival instinct. And I see animals that will defend themselves whether it be from attack or even amongst themselves in a group. But I think their violence is far different than a humans. There existence is much more cut and dry  – we humans muddle things up in this world. 

Humans have been given the ability to reason – we know what is right and wrong. Human hate may differ in its origin- hurt , jealousy , greed, fear but the end result is the same. Why is there so much violence? Why are so many people hurt, angry, scared? Why did our free will and ability to reason create such a chaotic world? Perhaps it’s just part of the human experience. Though I think God knows. 

It just seems that there’s more hate and anger – it’s escalating. 

We have terrorists who have wreaked havoc all over the world – humans who kill and scare other humans into submission. You begin to worry about going out. But you can’t hide – no place is safe – you have live or they win. 

In our own country we have our own upheaval. I don’t know all the answers but I think people should start doing some serious listening to eachother. 

I didn’t tell my kids about Baton Rouge or Nice. They may hear about it on their own -the world is at their call on any device or tv. If they want to talk about it they know they can come to me. But I’m not bringing it up – I just can’t keep talking about these violent acts filled with hate. Because it seems like I would have to be talking about this every week. Is this going to be their lives where these horrific events like that in Nice happen and are just expected? 

Will it be mainstream? 

I just can’t fathom that. 

We have discussed racism a lot since my kids are Asian and we live in a less diverse area they’ve experienced it themselves on a few occasions. 

  We’ve discussed terrorism and how we can’t run scared. But I’m not going to lie – when my daughter wants to go somewhere like a concert I do wonder if she shouldn’t just stay home. But that’s not living life. 

Then I’m reminded that love is out there. It’s in the aftermath of these sad events that we see how loving the human race can be. And that is what I can talk with my kids about. The reality that loves exists and is stronger than hate. That we can do our best to love the best we can. You can never talk too much about love. 

I can’t really understand this air of hate that is trying to permeate our world. But I can try to keep placing my bets on love.  On the days where I almost lose hope in humanity it seems that’s when I see acts of love and human kindness that I try to cling to. 

I can’t let the hate weaken my soul but some days it’s hard.  Very hard.  

I don’t think I’ll ever understand.