Grieving What Should Have Been and Never Will Be.

Image Creator Borut Trdina

I feel like shit today.  Emotionally and physically.

 After yesterdays…argument?  Whatever it was, I find myself in the familiar position of hating myself and all the things that I do to make life more difficult for myself.  I can’t get over the feeling that I really am the on that causes all the upset in our relationship and if I could jet get my shit together then life could be normal and happy. 

Yesterday I wanted to have a conversation about money, which is a very sensitive topic between Gerry and I.  Why it has become sensitive, I am not entirely sure, but I have some thoughts on it.  I have never been comfortable talking about money because I never had it before we moved in. He made the right choices in life, which put him in the position of being financially stable and I was single mom on welfare begot from a single mom on welfare begot from a single mom who struggled to make ends me.  So it’s all I have ever known.  My relationship with money is complicated and uncomfortable, so my trying to talk about it brings all sort of thoughts and feelings in my mind, and of course I want to avoid those. 

To begin with, I am horrible with money.  Always have been.  I was never taught the importance of managing it, and as I entered into adulthood, my way of "managing" was to justify how I spent it when I shouldn’t have been, and then robbing Peter to pay Paul to make up for that.  Always behind.  Always in the red.  Always scrambling to catch up and dreaming of someday having more so I could finally be “comfortable”.

My position with money – being on welfare, being in debt, etc – was always a source of shame for me because I knew what I was doing wasn’t the right way, and I was embarrassed by it.  I was failing in this area in life that “everyone else” knew how to manage.  My peers were driving cars that didn’t break down every couple of months, and when  they did break down they could afford to get them repaired.  My peers were buying their own homes, doing renovations, getting new appliances, going on vacations, going school shopping for their kids, or even just going to the grocery store whenever they wanted without having to make sure you didn’t spend to much.  I remember so many times at the grocery store watching the people in front of me fill the belt with all sort of things from food, to household goods, clothes, kitchen items, and wondering what it was like to be able to do that.  How did it feel to walk into a store and not fret about whether or not your EBT card had enough to get you through the end of the month, and how you were going to be able to afford the hotdish you have to make for the football banquet.  It’s gotta be something that doesn’t look poor, but can you afford it?

So, bringing that into a relationship is difficult.  Pair that up with whatever Gs hang ups are about money, which I am not entirely sure of because we don’t talk about it.  He likes to have money but doesn't as much like to spend it.  I know that he does seem to have a desire to make as much as he can – or at least that is how I have interpreted things from our few and far between conversations that don’t degrade into an argument.  And that he thinks that money is one of those conversation topics that creates automatic complications in a relationship.  I heard that from him early in our relationship – Money, Sex, Religion – the three taboo topics to bring up in a relationship.  Of course, I avoided all three of them early in our relationship because I didn’t want to rock the boat.  But they can’t be avoided forever, and when they finally reared their head in our relationship there was no room for civil conversation.  It was immediate defensiveness and that dissolved into arguments. 

A lot of our conversations dissolve into arguments. There is no room for the civil exchange of thoughts and opinions and ideas.  I feel like most of our conversations are surface level only. 

When I moved in with him after Kari graduated, we would argue about money a lot.  In my mind we had money to spend, so why couldn't we sell the house we were in and buy a house in the country.  Why couldn't we buy a new car?  Why couldn't we get a new set of furniture or go on a vacation.  I'll admit, I didn't have a clear understanding of the workings of being financially independent.  He was debt free (save for the mortgage) and planned on staying that way.  So, when I struggled comprehending what he was explaining to me, he presented the budget for us to follow.  It has been helpful in the way of tracking our spending and saving, but I don't feel like it has accomplished what it was meant to accomplish in the way of saving for the more exciting things in life. That was the issue last night and that was what I was trying to approach.  

I felt like immediately things got off the wrong start when I was trying to get my words out, but it wasn't the right way.  Gerry commented about being straight about what I wanted instead of talking around the topic.  That was enough for me to immediately get on the defense and feel like I had to explain WHY I was going about it the way I was, which devolved in to my pointing out how he has made it difficult in the past to approach these topics, and so things are starting to ramp up.  After unnecessary and unproductive back and forth, I feel like I have gotten across what I was trying to say, but then he asks me if I think I got my point across -- the question really confuses me and I am not sure how I am supposed to respond, so I am grasping to say anything because I have to give an answer, right?  I can't say I don't understand,  and I feel put on the spot and so I start to internally panic.  "What did I do?  What haven't I done right?  I thought he understood.  What did I miss?" and then it ramps up again, and my anxiety level is getting higher and I am scrambling again to explain myself, but the words coming out of my own mouth don't make sense even to me...it's just filling space and it's creating more upset and it's all going wrong.  Eventually things seem to settle down and we have some to an agreement, and the conversation starts to turn towards better things, but then I feel like he begins nitpicking little things that do not matter in the moment.  Or he starts pointing our where I am handling things the wrong way, or how I am cutting him off and not allowing him to speak and how HE JUST WANTS TO BE HEARD.  I will admit, hearing him say that absolutely SENDS ME because I have been saying for YEARS to him that is what I have needed from him.  So I am fighting against getting really angry and mean because at this point I just want to SCREAM at him WHAT ABOUT ME!?!?  What about all the times I have expressed that very thing and you act like you have no clue what I am talking about, but when you bring it up I should take heed?  I *am* screaming in my head, and I just want to throw my body around hurt myself because that will feel much better than what I am feeling at the moment.

And as predicted, instead of accomplishing anything productive or coming to any sort of common ground, the conversation turns in to him going to bed and my sitting in the car crying my head off and feeling like shit because one again, I have no self control and I have fucked things up. Last might my dreams were full of fear and sadness, trying to escape whatever it was that was trying to hurt me, and feeling helpless and hopeless that anything will ever be different for me.  I wake up not wanting to be here.  I don't want to feel the way I am feeling and I just wish something would happen to me.  Last night I dreamed of getting high and it is so tempting to go to the dispensary for that temporary escape and relief.  I just want to hide from all of this.

I feel sick to my stomach right now.  For breakfast I had an egg and three small potatoes and I feel like I want to throw it all back up. I feel like I want to cry all day.  I feel alone.  I don’t have anyone to talk to about all the craziness in my head.  I only have myself and I don’t like my own company most of the time because I can’t keep my thoughts and feelings under control.  So, I fall into this pit of self-hate and wishing I just didn’t have to be here. 

It is Easter and Gerry is making his rounds of calling his family, and although I know he’s doing it because it’s the holiday,  I can’t help feeling like he’s rubbing it in that I am feeling like crap and I am sitting on the sofa crying to myself and feeling miserable and he’s going on about his normal every day life like nothing is wrong.  

I am confused at what his role is when I am feeling this way.  I want him to be tender, and empathetic and comfort me.  I want him to assure me I am not the terrible person I believe myself to be, or who I feel he thinks I am. I want him to tell me the reasons he loves me, and the good things he sees in me because I feel completely incapable of believing those things on my own.  Although, in the end would it really matter if he did do those things, because I likely wouldn’t believe it anyway.  As much as I do enjoy hearing nice things about myself, I really don’t believe it.  I can’t see those things, so if I can’t see those things it’s not true. 

I am always stumped when I have been asked to name something good about myself.  I always fumble to find something and when I finally pull something out, I feel uncomfortable and like a fraud.

I simply do not like myself, and I find it hard to believe that anyone else truly does either.  Especially Gerry. 

One of the things I have always wanted in a partner was someone who loved me so much that they would be my cheerleader and help lift me up.  They would love me so much they would want to convince me how valuable I was to them and to everyone else.  That making me happy and feel loved would make them feel happy and loved.  But I have never found that, and maybe it’s wrong for me to believe that is the way it is supposed to be.  Maybe I have been wrong all this time thinking that this is a reasonable expectation..or that I deserve that. 

G is currently sitting 4 feet from me, eating his lunch and watching golf while I am writing and crying.  No attempt to comfort.  Just ignoring me, pretending I am not here – or pretending I am not doing what I am doing.  It makes me feel guilty.  It makes me feel like I am a shit person for having these feeling and needs.  If *I* could just get my shit together then *WE* could be happy.

It all just confirms, to me, that my presence here has no meaning.  I don’t matter enough. I would love to hear him say “I am sorry for all the hurt you experienced, and I wish I could take it away…I want to help you feel better.  I want to help you heal because I love you and I want you to be the best person you can be so we can be the best people we can be” but I don’t think that is anywhere on his radar.  It feels like he thinks that I need to figure this shit on my own, and I suppose I can…and will..but it would feel so much better knowing I have the love and support I need in my corner that I can fall back on when things get difficult or I start to lose control.

 Gerry just brought up last nights conversation and tells me that one of the point I made last night has a lot of merit and he agrees with it, but what does that matter to me at this point.  The who interaction reminds me of my mom apologizing to me long after she did or said whatever she could to hurt me - physically and emotionally.  This is why words mean nothing to me.  People can talk talk talk all they want, but without action, they mean nothing.  

So because he's asking me questions that I can not answer, I get the "hm", which he says means nothing, but I interpret to mean he thinks that I should be able to answer.  Even when I say "I am not in the right place right now to answer your questions" -- giving him the straight answer he says he wants from me -- but it still feels like it's the wrong answer.  So what is?  What can I do or say that is going to be satisfactory for him?  I just never know.  And right now, I am feeling like I don't even care to know or try or anything. 

It's when these things come up like this - these arguments and these feelings - that I want to leave.  I am tired of feeling this way about myself.  I do a good enough job on my own tearing myself down, I don't need any help, so I start day dreaming about leaving.  Getting my own place, doing my own thing, getting out from under the feeling that I am just not good enough for him.  That I am the root of all of our issues.  Just me, the cats, my plants.  I'd still want to work on improving myself and learning and growing, but I feel like it would be so much easier to do without wondering what will be the next thing I do that will create conflict.  I'm just so damn tired of it and I don't want to do it any more.  

I was feeling so great the last couple of weeks.  I even started walking on my lunch breaks and making a conscious effort to make healthier choices so I could work towards being healthier over all.  I was feeling good about us and life in general.  I spent the first half of the day wandering through garden centers and marveling at all the beautiful plants and dreaming about pulling out my "good camera" to start taking photos again, and then here I am the next day feeling like all of that is just nonsense and anything I was feeling yesterday was a false happiness because I don't have the right foundation for happiness to put it's roots down.  

 

Head Space

Headspace by lucid a

I've not been in a good one lately.  Head space, that is.  Last night I asked Gerry for a divorce, convinced that was going to solve all my issues.  All the issues that have been around long since Gerry and I ever met.  I had convinced myself that our lack of intimate sharing and emotional connection had wore me down so much that I just couldn't go on in our relationship.  I was certain that our relationship had run its course.  All this stemmed from our first session with a new marriage counselor when I said that I sometimes wondered if our relationship was ever truly genuine and if we only were together because it was convenient for the both of us at the time.  We both had needs and empty spaces that needed to be filled, and we stumbled upon each other at the right time to satiate those needs of that time.  And for a while I was happy and satisfied in our relationship.  I loved spending time with him. I loved our adventures together.  I loved us.  

Something changed, though. I wanted things to go to the next step - marriage - and I felt like there was some push back on that.  There was.  When ever I brought it up (usually several drinks in) it would become a point of contention.  I wanted to get married and he jumped around the idea.  He wasn't committing.  That confirmed, for me, the insecurities I have always had about myself. I wasn't good enough for marriage. Or at least, I wasn't good enough for marriage to him.  That ate at me.  That belief (whether it was true or not) wormed its way into my brain and set up shop.  And it hasn't gone away.  Instead, it has built a big ole mansion in the front of my brain, and it has colored my vision in a way that I struggle every damned day to see myself in any positive like.  

I am overweight.

I am not active.

I don't have a degree.

I don't make enough money to support myself.
I was mean to my mother when she didn't deserve it.

I neglected my children.

I am selfish and self-centered.

I never finish what I start.

I don't trust others.

I don't trust myself.

I don't know how to be genuine - I feel like everything I do is "put on" to appease others.  This one runs deep.  I have *always* struggled with knowing who "erin" is, because "erin" has spent a lifetime of molding herself into who she thinks people want her to be.  And THAT has gotten exhausting.  I am tired of playing whatever fucking role that I am playing.  I miss feeling joy and excitement for life, which I do recall having at one point when the kids were young.  But it's been lost and replaced with exhaustion and anger.  

I am angry a lot.  For stupid things.  I don't want to be angry.  I feel like I come from a long line of angry women.  My mother, my aunts, my grandmother.  All angry and disappointed that the world doesn't work they way they think it should.  

Lack of control is big too. More often I feel like I am "along for the ride" in my relationship.  I don't feel like I add anything but frustration to our relationship because I like to stack the dishes one way and Gerry doesn't care.  A minor example, but a good one.  It's usually the minor shit that works me up and because I am unable to express myself in a reasonable constructive way, I end up landing on getting angry at little things that aren't really a big deal.  

BUT - at the same time I have this thought that I am allowed to want things done a certain way and, just because I do and Gerry doesn't, does not mean that I am wrong or being problematic.  And that's how I end up feeling.  My thought is, if it doesn't matter to you where the kitchen scissors go, then why not just put them where I prefer them to go (another small, but accurate example)?  Why dig your feet in and accuse me of trying to "control you" when you say you don't care where they go?  These kind of examples are the kinds of things the build up in my head, and I begin to wonder where I actually fit in in this relationship.  What the hell is my roll here? 

I cycle through this thought pattern every damned month, sometimes more, and it is wearing me the fuck down.  Some days I feel like I want to get on my knees and PLEAD to the Universe to take me out.  I am DONE.  There is too much pain and sadness and anger to stay here.  I just want peace.

As with my head, this post is all over the place.  And reading it back over, the examples I gave seem so trivial and don't match what it going on in my head.  But those examples are literally just the teeny tiny tip of the iceberg.  What is below the surface is so much bigger and complicated than what everyone else sees.  And I can understand how only being able to see that tip would look bad to others.  And by others, I mean Gerry.  I know he knows that I struggle with depression, and he knows that I had a rough go of it as a kid, but sometimes I feel like he thinks all those things are just easy to move on from and that I am making a bigger deal out of things than they are.  And there probably is truth to that because I do tend to get worked over seemingly simple issues - but that's not because I am trying to be an asshole.  It's because I don't KNOW HOW to be anything else.  Growing up, there was never such a thing as "something simple that can be easily resolved."  There was always a big deal, and more often than not, a huge altercation as a result.  Sometimes only verbal, sometimes verbal and physical. I lived with constant chaos in my life.  I never knew when my mom was going to get upset and lash out.  My Dad and my step-mom weren't any better, though no physical.  I never knew if/when I was doing something wrong in their presence - either by acting the wrong way, saying the wrong things, etc.  With all my parents I was always analyzing and trying to adjust myself to do what they want me do or who I thought they wanted me to be.  

I still do that today.  When I talk to my dad & step-mom I alter my conversations and stories to best fit the narrative I think they want. I do that with people at work.  With people I make "friends" with.  People I have just met.  I don't know who the fuck I am.

I just asked Gerry if he knows who he is, and he said for the the most part he does.  He doesn't think much about it.  He said he attributes a lot of that as growing up in the Catholic church - knowing that you are one of Gods creations on Earth.  Ha.  Maybe I just need God.  NOT.

I need something though.  I need to figure out this shit in my head, because ultimately it will end me.  One way or another.  

Oh.  I took back my request for a divorce today.  I think Gerry knew it I would because he was fairly low key with it yesterday.  But this is becoming enough of a pattern for me, that something needs to change.  Even if he and I don't stay together, I need to fix whatever this has been eating away at my soul.  This un-detectable emotional cancer that makes believe that there is no love for me here and that I will only find the peace I seek after I die.  Sometimes that desire for that peace is so strong, it is frightening.  

Finding my Strength

 

Since ending my chemo and radiation I have struggled a lot with pain. Some of it is  a result of the the chemotherapy I received.  From that I have peripheral neuropathy in both my hands and my feet.  So that means my hands and feet consistently feel like they have that "pins and needles" sensation — similar to what you might feel when a limb "wakes up" after "falling asleep".  I have gotten used to it, so it doesn't bother me as much as it used to, but I do get flare ups from time to time and when that happens, it is very uncomfortable — even bordering on miserable.

Another side effect is due to the medication I take — Tamoxifen — which is an estrogen blocker.  My cancer was ER+/PR- and HER2 + and what that means is my cancer was sensitive to estrogen and relied on the estrogen to fuel it's growth.  That's the super simple explanation.  Because I was also HER2+, that meant my cancer was an aggressive variety, thus the reason I had both chemotherapy and radiation.  After those treatments were over I started with Tamoxifen to block my body from producing estrogen, therefore putting me into a manufactured state of menopause.  When your body does not produce estrogen, you are more susceptible to post-menopausal issues, such as arthritis which I developed in both my feet (of all places).  The Tamoxifen also has side effects of it's own: Bone and/or joint pain, muscle aches, hot flashes, extreme fatigue, depression, headaches to name a few and all of which I have experienced since starting it in 2018. I did play around with switching out with a couple of other medications (Anastrozole, Exemestane) my my side effects were even worse, so I ended up back on the Tamoxifen and had resigned myself to feeling miserable for the duration of the 5+ years I would need to be on the medication.

That resignation turned me into a lump.  If I walked for too long, my feet would get so sore I would be hobbling everywhere.  My gait changed since I couldn't walk normal and that started causing all sorts of other troubles — back aches, losing strength and flexibility, more depression, and a huge increase in my pain levels.  Every morning I woke up in pain from the top of my head to the bottom of my feet.  I could not remember what it felt like to not hurt, and it made me angry and jealous of people who could be "normal".  I slipped into a hole of self-pity and I became bitter and unhappy.  And I didn't do anything to make it better.  I mean, I did try topical creams, oral medications, CBDs, and even physical therapy, but I had gotten too far and all I knew how to say to myself was "I will never be without pain again" and that began to break me.

Fast forward to last December when Gerry and I moved to Minnesota.  The Twin Cities.  Initially I was super excited about it.  There was going to be so much more to do, so much more to experience, and better access to doctors and treatments that would help heal me.  That is what I told myself, at least.  We moved in the dead of winter, though.  In fact, we arrived to our new home (a tiny 2-bedroom apartment on the 2nd floor of a 3-floor building) the same day that 20 inches of snow fell.  It was just Gerry and I — we did not hire movers — so it was just the two of us unloading all of our belongings from the U-Haul 25-feet from the front door, through an 8inch wide path in the snow, up a flight of stairs and another 30-feet down the hall.  It took us about 4 hours to get everything unloaded, and by the end of that day my entire body was on fire.  Every step was like stepping on razor sharp shards of glass while being simultaneously being slammed on the tops of my feet with a hammer.  All my bones and muscles screamed and ached, my feet and toes felt on fire from the neuropathy being aggravated and I felt miserable.  

It took me a good couple weeks to get to feeling back to my new normal, which was still painful but not to the point where I wanted to step in front of a fast moving truck.  Experiencing that much intense pain, and dealing with the aftermath so long after we arrived broke me even more.  I fell into a deep depression, I swung back and forth between being angry and sad, multiple times a day.  I wasn't working right away, so I spent my days trapped inside this tiny box of an apartment alone.  Well, I had the cats, but Gerry's new position took him on the road, so he was gone that Monday after we arrived.  After forcing myself to make the apartment livable, I spent my days sitting on my ass and feeling homesick.  

Christmas was miserable.  I had an emotional breakdown and spent most of the day quietly crying and being angry.  Gerry was home at this point, so he was the lucky recipient of all of the feelings I was having.  What I didn't realize then, and I do now though, was that the majority of what I was experiencing was related to how much pain I was in.  I could not get that back under control, so I couldn't control anything.  I was at the mercy of this invisible invader in my body that was slowly taking me down and destroying as much of me as it could.

I did eventually find a job, but due to the increase in my pain levels and how sad and homesick, and lonely and isolated I was, I couldn't allow myself to really establish any real connection with anyone and I found myself hating it.  Well, I liked the type of work I was doing, but I hated the atmosphere and had some interpersonal conflicts with one of my co-workers, which only added to everything else.  

The remainder of the winter and into spring was long, dark, cold and miserable.  Minnesota is freaking ridiculous when it comes to cold weather.  The 20inches of snow that greeted us when we arrived was not normal, according to the locals.  But the consistent cold days with temps in the -30s for days on end, with winds up to 40 miles an hour making the windchill a -55 *is* normal, and I HATED IT.  Anytime someone from back home would ask me how things in MN were going, I couldn't find anything good to say.  It didn't help that I was alone a lot since Gerry was on the road, and since I wasn't familiar with the area, when I wasn't working, I stayed home.  I didn't do a damn thing besides eat, feel sad and angry, battle with chronic pain, work, come home, and sit, battle with chronic pain, eat. feel sad angry, stay up too late, repeat, repeat, repeat.  

The weather got better, though, and of course the warmer temps and the longer days started to help improve my mood.  Spring blossomed and I picked up some tomato and pepper plants to grow on our balcony and tried to feel better.  I had also started seeing a therapist via telehealth, and it was nice to have someone to unload on.  Gerry isn't someone I do that with — though I wish I could — but I get angry too easily with him for reasons I can't always explain.  At any rate I started feeling slightly better about things, but  I was still dealing with a lot of pain.  My left foot had gotten so bad that I dreaded getting up from my recliner to walk to the bathroom.  I was still physically stick, despite feeling like mentally I was getting myself pulled out of the muck.

By June, I was just too tired of dealing with the pain, and felt that I needed to do something.  The quality of my life was suffering more than ever and was literally sitting on my ass for as many hours in a day I could get away with.  Doing that meant I could avoid as much pain as possible.  But I knew that if I kept in that direction, I was going to do a lot more damage to myself in the long term.  I kept having visions of myself at 50 years old (only a couple years away) and needing a cane or walker to get around.  Or worse yet, a wheelchair.  I was getting more and more weak, I felt more and more tired and lacked energy to do anything.  I wasn't living, but just existing.  And then I began to recognize the return of the dark and defeating thoughts that made me start to think about how nice it would be to just not have to feel this any more and how I just wished I wouldn't wake up in the morning.  This is when I made the decision to stop taking the Tamoxifen. I couldn't do anything about the arthritis, outside of surgery.  The damage there was done, but I could stop taking the medication that provided the greatest contribution to how I was feeling.  

June 17th was the last day I took Tamoxifen.  I knew that in making this decision, I would need to be more proactive in other ways to reduce my chances of having a breast cancer recurrence, so I contacted my oncologist and asked for a referral  for cancer rehab therapy to help with restoring my strength and stamina.  I also scheduled a steroid injection for my left foot, hoping I'd get a few pain-free months where I could concentrate on working on my health.  Women who are obese when they are first diagnosed with cancer have a higher chance of recurrence, so my decision was a gamble.  I could be sentencing myself to more struggle in the future, but I had to consider how my present was.  What really tipped me over the edge in making that decision was a moment I had about  the difference between suicide and assisted suicide.  In some parts of the country, and world, a person who has been diagnosed with a chronic terminal illness can make the choice to end their own lives in order to not suffer more than they have to.  I was having a bad pain day and I was feeling at my wits end.  I had been crying for two days, off and on, I wasn't sleeping well, I was angry and sad and I just didn't want to be alive anymore.  Plain and simple.  Had I had the means, I don't know that I wouldn't have tried something.  

I remember a light bulb of sorts going off and suddenly having the thought "what difference is there really between someone who suffers physical pain from a terminal illness and someone who suffers mental pain from a mental illness or chronic pain from a non-terminal illness".  At that moment, I didn't feel there was a difference and I thought to myself "If I don't want to feel this way anymore, I have the RIGHT to stop it any way I choose." You would think with those kind of thoughts, I would have started "planning" something, and I did. But what I started planning was a way to get myself out of where  was.  I told myself that if I wanted to end things, I could.  I had the right to choose how I wanted to live in this world, or how I chose to exit it.  But I wasn't ready to exit it, so my only other option was to make the changes needed to live the way I wanted to.

To be continued....

I'm Still Alive, But I'm Not Happy About It

That's just me being dramatic.  I haven't journaled in quite some time and decided I'd pop on to good ole LJ to see how things were doing in this world, and I realized my last post was somewhat grim.  Oops!  

Quick catch up.  Had Chemo & Radiation.  Did not get mastectomy.  Lost sight in my left eye while going through chemo.  Started hormone blocking meds after ending radiation in 2018.  I hate it.  Stopped taking it about 2 months ago.  On the fence about taking it again.

Gerry and I got married just before everything shut down for Covid in March 2020. Nothing special.  Just a quick trip to the courthouse with my sister and his parents, but finally made it official.  

"Broke Up" with a couple of long term friends.  Still not sure what happened there.  Just seemed like one day they were mad at me and one of our other friends and we got shut out.  No explanation.  Silence.

Gerry got a promotion of sorts at work that required us to move to Minnesota.  I was initially excited about it, but after getting here I got very homesick and lonely.  So I've been struggling.

That's it in a nutshell.  I was going to write more, but I am tired.  It's been a long, emotionally heavy day. 

On the upswing..

It seems like my cancer has taken a back seat to all this shizznit going on with my eye.  With the exception of still doing chemotherapy once a week, I don't even really think much about the cancer on it's own. 

This eye stuff, though....GEEZE!

Things are looking up, though.  Last week Dr. Shere said that the retinitis in my left eye looked worse and there was now a lesion on the retina of my right eye that had not been there the week before.  So, at that point, he took some vitreal fluid from my right eye for some testing, which came back positive for Toxoplasmosis.  So that confirmed that we were definitely on the right track in regards to what was causing my eye problems.

So, my visit with him today was to check again to see if the oral meds I was taking was helping or not.  He said there wasn't any changes on my left eye, and the right eye looked slightly better.  We decided that the best route to go would be to go ahead with the injection of clindamycin in both eyes to help treat the toxo, along with keeping up with the oral meds to treat the infection systemically.  He has also referred me to a local infectious disease doctor to look into being treated in a way that would just get rid of the Toxoplasma Gondii from my system altogether.  T.G. is actually a parasite that can live in your body, toxoplasmosis is the infection brought on by the parasite, which normally doesn't bother people the millions of people who have it.  Unless you end up with a compromised immune system like mine.  So, being treated in a way to get rid of the parasite will ultimately ensure that I do not end up with any further complications from it.  It's already done enough damage as it is. 

So, I may end up with more injections in my eyes as things go along.  As things improve, then the injections won't be necessary, but I will continue on the oral meds for a while yet.

I do have an appointment at Mayo Clinic later this week to see a retina specialist there.  At this point, my only purpose in seeing her is to see if there might be any treatments she knows of that could potentially restore the sight in my left eye.  Chances are there is not, but I did read a couple of articles on stem cell treatments for retinal damage from other types of infections, so I'd like to see if she knows anything about that.  It would be great if I could have sight in both my eyes again, but at this point I have resigned myself to the very likely possibility that it won't happen.  And that's okay.  I'm still alive, have lots of love in my life, and I am extremely blessed.  I can live without one eye in exchange for all of that! :D

In cancer related news, I have only 3 treatments left.  May 4th will be my last chemo treatment, and then I will have radiation for a handful of weeks after that.  I will eventually be going back to Mayo clinic for a consultation regarding the mastectomy and reconstruction.  I am still on the fence with all of that, and depending on what they have to say,,  I am leaning more against having surgery.  I am keeping my mind open, though.

I did get some good news today.  I have been concerned for awhile now that my chances of continuing on with my nursing degree might be in jeopardy because of the situation with my eye.  I had been putting off making the phone call to the nursing department because I didn't want to hear the bad news.  I finally called today and spoke with the Dean of Nursing.  I got her up to date with how I have been and what I have yet to do as far as treatment goes.  And then I told her there was a new development and let her know about what happened and that I was now blind in that eye.  She told me that was totally NOT a problem, and there was no reason I could not continue with the program!!!! 

HALLELUJAH!!!

*happy dance*

It might make things a little harder for me, but Nancy told me there were things the school could do to make accomodations for me...like audio textbooks and the like.  SO HAPPY!!!!  And I am sure, over time, my brain will adjust to having just one eye, so things might improve with my sight in that way.  At any rate, I am just so thankful that I can still move forward and that this whole situation hasn't put a stop to my goals.  I'm even more determined to get this done, now! 

Nice try, Universe!!!  You can't stop me!!!

Toxoplasma Gondii ...aka cat poo parasite

Click the link and feast your eye(s) on all the FUN that is Toxoplasmosis.

"A single-celled parasite called Toxoplasma gondii causes a disease known as toxoplasmosis. While the parasite is found throughout the world, more than 60 million people in the United States may be infected with the Toxoplasma parasite. Of those who are infected, very few have symptoms because a healthy person’s immune system usually keeps the parasite from causing illness. However, pregnant women and individuals who have compromised immune systems should be cautious; for them, a Toxoplasma infection could cause serious health problems."

"In the human host, the parasites form tissue cysts, most commonly in skeletal muscle, myocardium, brain, and eyes; these cysts may remain throughout the life of the host. Diagnosis is usually achieved by serology, although tissue cysts may be observed in stained biopsy specimens. Diagnosis of congenital infections can be achieved by detecting T. gondii DNA in amniotic fluid using molecular methods such as PCR."

"The eye disease can reactivate months or years later, each time causing more damage to the retina. If the central structures of the retina are involved there will be a progressive loss of vision that can lead to blindness."

"Ocular disease is diagnosed based on the appearance of the lesions in the eye, symptoms, course of disease, and often serologic testing"

All of this information from the CDC website.

EARLINE IS TRYING TO KILL ME!!!

Dr. Shere called me today to let me know that the tissue sample and the vitreous fluid both came back positive for Toxoplasmosis.  

I have never been happier to hear news like that in all my life!!!

If I could have reached through to phone to give Doc a huge hug and kiss, I would have!!  I was ready to run out on the street and start passing them out to strangers!  Too cold, though.  :p

Seriously, though....getting that news from him just lifted so much of the *heavy* load of anxiety that I've been carrying around with me the last few months while we've been trying to figure out what was going on.  Progressively losing my vision in my left eye didn't help either.  I was having a hard time feeling that things were going to get better, and that possibility was starting to mess with my head a bit.  Who cares if I have cancer, I'm freaking going blind in one eye! 

So Yeah.

WHen he told me the results, immediately I felt a huge release of all those worries and anxieties and I was just so very very happy all of a sudden.  Who would have thought that I would be happy about finding out I have a colony of parasites living in my system that attacked my retina and blinded left eye!

I was ELATED.  Effing On top of the World, Looking Down on Creation ELATED!!

Yesssss.

So.  Next plan of action is to get me back on Bactrim, which will treat the toxoplasmosis.  I may have to be on it a bit longer with still being on chemo and then doing radiation after.  But that's fine.  I'll take that shizznit!!  It's going to kick those nasty bugs out of my system! 

So, I feel renewed!  Rejuvenated! 

I feel like a cloud has been lifted and the light at the tunnel is burning much much brighter now!!

Have a Happy Easter, Friends!  What ever way you celebrate, I hope you feel all the love, joy, and happiness that you all deserve!!

Blessings to you all!

Scary as F***.

I’m getting tired, friends.

Treatments are going well.  The only major side-effects I am feeling from this round of chemo is being extra tired and everything I eat tasting like it’s been soaked in vegetable oil first.  Oh.  And dry eyes.  Lots of dry eyes.

Speaking of eyes, things are not going so well in that department.  I have completely lost vision in my left eye…well, there is a small bit of vision in my upper left peripheral, but it is not enough to count as vision, as all I see with it is if it’s light or dark.  Up until yesterday, my right eye was doing okay except for some floaties that settle in my field of vision making it difficult to focus.  Today I woke up, and my eyesight in my right eye is covered with a white haze. 

There is *still* no clear idea as to what damaged the retina in my left eye, or why it has continued to get worse, or if it is going to do the same thing to my right eye.  I have been tested for several viruses, bacteria’s, parasites, but everything keeps coming back negative. 

So. My doctor has me scheduled for a vitrectomy tomorrow afternoon, so he can collect a larger sample of vitreous fluid.  The hope is that with a larger sample, there would be a better chance of getting more accurate results.  According to him, the testing for some of these viruses and bugs are not that reliable, so a false negative result is common.  That said, I have been on a variety of medications; anitbiotics, antiviral, and antifungal.  Just to cover all the bases and see if something would work, but nothing has.  It’s only gotten worse and worse. 

One of the concerns is that it may be a CMV virus that is resistant to the antiviral meds I am taking.  If they find that virus in the vitreous fluid, a sensitivity test will be done to check for viral resistance to medication.  It would be EXTREMELY rare that would be the case, but it’s still a possibility.  

The other concern is making sure the same thing doesn’t happen to my right eye, which with this morning’s appearance of the white haze, has me nervous. Not knowing what is really going on and not knowing if anything is going to turn up in the tests they run as me a little ramped up in the brain. 

I really don’t know what to do, to be honest.  How to think, how to feel, what to expect.  I knew that dealing with cancer was going to be a pain in the ass, but I was prepared for that.  I am not quite as well prepared for this.  

And it’s scary as fuck.

Life Is But A Dream

Today was Taxol treatment numero tres (3).  So far so good.  This stuff isn't bothering me NEARLY as much as the A/C did.  Last week, day two is when the effects of the chemo hit.  When I woke up on Thursday morning I felt incredibly worn out.  Chemo brain was in full gear, so much so that I took my evening meds instead of my morning meds.  I heated up water for my tea in the microwave and found that I had forgotten to put water in the cup!  Yikes!!  Most of all, though, I felt incredibly tired, so I didn't do much of anything on Thursday except sit in my recliner and watch Judge Judy and the Olympics.  It was almost the same kind of feeling you get when you are first sick with a cold and your whole body goes into that "sick mode" of fatigue and general malaise.  That's how Thursday was.

From Friday on, I progressively felt better, and I did have at least a couple of days where I felt "normal" enough to do "normal" stuff. Like going to the grocery store or giving the bathroom a good scrub down and not feeling wiped out afterward.  It felt pretty damned good, to be honest.  I've spent so much time, the last couple of months, feeling "not normal" that I appreciate "normal" so much more now.  :)

Went to Green Bay again yesterday to follow-up with Dr. Shere.  What he told me this time is not a) what I expected to hear, and b) not what I wanted to hear.  He basically told me the tissue in my left eye, that is causing the visual obstruction, has been damaged and it is unlikely my full vision will return.  So that means the dark spots in my eye, that I can't see through, will not go away, and the dark shadow that blurs my peripheral vision and makes it even more difficult to see, will also not go away.  Well, shit.

I decided to look into a second opinion, so I called Mayo Clinic to get that ball rolling.  There are just so many unanswered questions, except for the fact that the chemo compromised my immune system that started WHATEVER is going on with my eyes.  Dr. Shere called me today to let me know he's really concerned about how thin my retina is in a couple of spots on both my eyes.  Apparently he is also concerned about the tear he "laser welded" on my first visit isn't going to hold, which could result in a detached retina.  So he wants to zap that eye a couple more times on Monday.  He's back to thinking it's a virus , something that most of us carry, but is usually kept in check by our immune system when we are healthy.  However, when your immune system isn't working right, and your body can't keep it in check, it can become active.  And it usually presents as issues in the eye.  And if not treated properly, well...it's not good.  So, I just feel I need a little more expert opinion on this whole situation.  Fortunately Dr. Shere is on board with that, and said a lot of good things about the specialist at Mayo Clinic.  His office has already sent the referral letter and my medical records to the Mayo Clinic Ophthalmology department, so I am just waiting for the information to be reviewed before they call me to set up an appointment.  Perhaps sometime next week.

I was having a conversation today with a friend of mine who had cancer and went through heavy chemo and even a stem cell treatment.  She talked about how she looks back at her time having cancer as sort of a dream.  I could relate, except I have that feeling now.  I just feel like this WHOLE situation has been so ridiculous, so far, with all these odd little things have have come up --- it HAS to be a dream!!  Right?!

*sigh*

I just don't know.  I hate having unanswered questions.  It drives me a little batty.  My Dad mentioned that because it's something that I can't control, it makes it that much more difficult to handle.  He's right.  I know I have a bit of a controlling nature.  Not real severe, but enough that I take comfort in knowing *I* have the control.  But there is NO CONTROL with cancer and all of its side adventures.  And that grinds my gears like you wouldn't believe.

All that said -- life isn't terrible.  I have a home, I have food, I have a good prognosis.  I have people in my life that I love dearly, and who love me back.  Frustrations, unanswered questions, and lack of control aside, I've got it pretty good for what is going on, and boy, I am so thankful for that.

Not getting all the answers...but still full of blessings.

It's hard to get all the answers when no one knows the all the questions.  

We went back to see Dr. Shere, my retina specialist, to see if the meds I am taking and/or the drops I am using is working at all.  After 6 days on a anti-viral medication, also 4 days on an antibiotic, along with Prednisone drops every hour while I am awake, you would think there would be a change.  Ha HA!!!  You would be wrong.  No change!

My titer for Toxoplasmosis came back negative, which is good.  Earline might not be trying to kill me.  Though there is another test I am waiting on, so it still might be her.  Dr. Shere did end up giving me an injection of Kenalog into my eyeball, and then because the pressure in my eyeball was too high, and I was totally blind in my left eye, he had to take a few ml of vitreous fluid back out of my eye to restore my sight.  What an odd experience.

Let me also say, you don't know terror until you are laying flat in an exam chair, your eyelids held open by some wire contraption, and your doctor standing over you with a needle in your eyeball.  He tells you to look straight ahead and DON'T MOVE, and now not moving all you can think of not doing, and it takes EVERY OUNCE OF RESTRAINT you have in your body to not move that eyeball the slightest.  There is a needle in it, after all.

I made it through.  I am off the Bactrin and have been prescribed Doxycycline to get a foot up if the Bartonella test comes back positive.  Still have to do the eye drops every hour while I am awake, so I set a timer on my phone to go off every hour.  I have learned that an hour doesn't last a very long time.

So, whatever is going on with my eye is still pretty much a mystery.  I asked Dr. Shere what if the Bartonella comes back negative, and he said "Then we just don't know.  Idiopathic.  No known cause," which is frustrating.  Perhaps for him as much as me.  The only thing we know for sure is that my immune system has been compromised because of the chemotherapy.  Hell, I was neutropenic half the time, so who knows where I could have picked up the bug that's messing with my eyeballs.  

I just hope that one of the handful of treatments I am on for this, works and heals my eye.  I pretty much only have peripheral vision in my left eye because of the position of the swollen optic nerve, which is obstructing the center of my field of vision.  However, whatever I can see in my peripheral is still obstructed by blurry vision and a dark shadow.  That is caused by the overall swelling and irritation of my eyeball.  

Anyway, chemo tomorrow.  I didn't get it last week because Dr. Siemers wanted to make sure my eye stuff wasn't related to the new chemo drug I am on (Taxol).  Dr. Shere said there was really no way to know if it was, so I guess if I go blind in the right eye too, we can explore that possibility a little further.

Back to Green Bay for a follow up with Dr. Shere a week from today.  Veruca has been packing on the miles these last few weeks.  Today we only went to Marinette, WI (har har), but our trip to Green Bay next Monday will make six trips we have taken in just over a months time.  Boy, I can't tell you how thankful I am that Gerry's job is so flexible.  He has been able to take every day off that I have needed him, either to drive me to chemo or to Green Bay. 

I really feel blessed that I have had it "so easy" in that regard.  I know there are other cancer patients who don't have the same, and I can only imagine the unnecessary stress it puts on an already sick person.  Those first several weeks of my chemo, I was so sick and felt so miserable, I don't know that I would have had the energy, or even the ambition, to worry about rides and what-not.  I think it is easily forgotten that not everyone has a readily available support system to help them through tough times.  If I am getting anything out of this cancer experience, it is how lucky I am that this happened when it did, and how blessed I am to have the support system I do.  It has also really made me think about those who don't; I often think about ways of how to correct that.

Most people wouldn't say cancer is a blessing, but I am going to say that, for me, it has been.  It has been made more than clear to me how much I am loved and valued.  I have always struggled with letting myself see that truth, because I always felt like I wasn't worth the time and effort.  But this experience has forced me to see it, and accept it.  It has been a very valuable lesson...and awakening...for me.

I am more blessed than I ever thought possible, and for that, I am so very, very grateful.

Peace and Love, my friends.

Cats, Broken Eyeballs, and No Chemo! Oh My!

No chemo today.  I am having some possible viral issues with my left eye, so Dr. Seimers decided that until we know more about what is going on with my eye, we should hold off the chemo just to make sure it isn't related to the Taxol (chemo med).  I am heading down to Green Bay tomorrow to see the retina specialist there.  According to the opthamologist I saw yesterday, my optic nerve and retina are both swollen and inflamed.  The swelling of the optic nerve is causing a blind spot in my field of vision, and the swelling of my retina is causing a shadowy cloud, making it so that everything else in my field of vision is dark and blurry.  So, basically, my left eye is broken.  I woke up this morning around 3am in some pretty bad pain from it.  It feels swollen, and my eye was watering and I just wanted to tear it out of my head.  I popped a couple of Tylenol, though, and that helped.  In the meantime, I am on an antiviral medication 3x a day for the next 10 days, and I will probably end up with a couple of needles stuck in my eyeball tomorrow.  Loads of fun!!

With my extra free time this morning, I stopped in at Lowe's to pick up some ceiling hooks to hang my plants.  That way I don't have to hang them on the curtain rod any more.  I also picked up some suet cakes, and a brick of mealworm to hang in the backyard for my bird friends.  When I got home, I was all excited to fill the bird feeder and hang all their new treats, but when I stepped out on the back porch I realized the snow was nearly thigh high in the backyard!  I didn't feeling like wading through all of that, so the birds will have to wait until I feel more up to it.  Poor things.  I've been neglecting them this winter.

I found a temporary home for Miss Earline.  It really breaks my heart that I have to oust her like this.  But she may be the cause of my eye trouble.  So she's gotta go, to be safe.  The boyfriend of a friend of mine offered to take her in.  He has a cat already, but as Lilah said "She's old, fat, and lazy."  I know that after a couple of days, Miss Earline will warm up to Gray-C and they will be friends for the time she is there.  I am just thankful I was able to find someone to take her.

I got some good news today!!  Earlier this week I had been told my Short Term Disability claim had been denied because my employer had a "pre-existing condition" clause in the policy.  Since I just bought the policy, starting Jan 1 of this year, my claim was not eligible.  I was upset and wasn't sure what I was going to do.  Start a Go-Fund-Me??  Rely on my tax refund??  I decided to appeal it, so I called the agency that handles our disability claims, and spoke to the woman who had reviewed my case.  Before I even had a chance to ask her about appealing, she started apologizing and told me she had made a mistake.  She had been looking at the Short Term Disability policy for a different employer when she made her determination, which has the "pre-existing condition" clause.  MY employer DOES NOT have that clause, so that means my claim was actually APPROVED!!!  What a HUGE relief!

It's nice to get some good news amidst all of the crap that's been going down the last couple months.  Between eyeball troubles, lung clots, viral infections, and chemo side effects, it's been a rough ride.  I am looking forward to things improving, though.  I feel like they are.  I have to believe they are.  That's how you get yourself through difficult moments -- believing that thing will improve and get better.  There is just no other way.

Peace Out, my Friends!

Would you like to swing on a Star...

I started my new chemo treatment this past Wednesday.  Twelve weeks total of weekly treatments.  The Taxol is supposed to be less taxing on my system as the previous chemo treatment, so hopefully that means no more neutropenia and no more anemia.  What I have noticed with it is that I do have a bit of nausea first thing when I wake up.  Compazine helps with that, though.

I feel more like myself, though.  I'm still tired, and my energy levels aren't what they used to be, but I don't feel exhausted and I don't feel sick all the time.  I don't feel like I have to take naps throughout the day.  I don't feel like I need to run to the loo every hour to dry heave.  I don't feel like my body is broken and I'll never feel normal again.  I feel good, and that is a fantastic feeling.

In fact, Gerry and I went out for dinner the other night and I didn't get sick or have a near syncopal episode!  That's progress, people!!

With all this newfound "feeling better" I now can turn my focus on finishing up my classes from last semester that I had to take Incompletes in.  I finally have all the information from both the instructors on what assignments I need to complete, as well as exams and final projects.  I have until the middle of May (end of semester) to complete it all, though, so I will be fine. 

I was trying to get an appointment to Mayo clinic for a consultation in regards to discussing the mastectomy and reconstruction.  Found out I can't get that scheduled until 3-6 weeks after I complete my chemotherapy.  Not really sure why, so I'll probably give their breast clinic a call next week to see if they can give me more details on that.  I was hoping to have the consultation done prior to completing chemo so I could then I could have a game plan for after.  However, none of this has stuck to "my plan" so I really shouldn't be surprised that this hasn't either.

I actually have been thinking a lot about the mastectomy surgery lately.  Initially, when it came to light that I would need chemotherapy, deciding to have a mastectomy was an easy one.  Most people I talked to would even say "You are having a mastectomy, right?" expecting that is the obvious way to go.  However, the more I think about it, the less I am convinced that is what I want to do.  I will have had a total of 16 chemo treatments by the end of my run, and the chemo is supposed to eradicate the cancer.  Plus, I will be on a hormone treatment medication for 5 years that will work to reduce my chances of developing cancer again.  So, part of me is sort of thinking "Why" do I need to cut off my breasts?  I understand it reduces the chance of recurrence, but so far there are no other factors, that I don't have control over, that would put me at risk again.  I suppose, if my genetic testing shows otherwise, then that would be different.  However, at this point, based on what is known about breast cancer and how it tends to develop, my weight, eating habits and alcohol consumption all play a part in whether or not I will get it again.  Keeping all of those factors under control, along with the chemo and the medication, will reduce the chance of my getting breast cancer again. 

I think what has really gotten me thinking this way is the reality that I would be having a major surgery that would be removing a part of my body that identify with.  Not that I am saying that my breasts are who I am, but they are a part of who I am and, to be honest, the idea of having them removed and replaced unsettles me a bit.  I didn't think it would bother me, but it the more I think about it, the more I don't like the idea.   There is part of me that worried about being "deformed"...that my breasts will look like something from a freakshow.  I know that won't happen, but there is that concern.  I also worry about long term complications.  I don't want to have repeated surgeries because something isn't sitting right or something has gone wrong with an implant.  Of course, everything might just go smoothly and I'll never have anything to worry about, but I never thought I would have breast cancer either, so I am not counting on not having some sort of complication. 

I just don't know right now.  I am looking forward to the consultation with Mayo clinic so they can give me all the pros and cons so I can make a final informed decision.  Overall, I will be happy when ALL of this is done with.  The chemo, the cancer, the surgeries, etc.  I just want to get back to regular life and focus on getting through school and getting my degree so I can move forward with my life.
I'm kind of getting tired of having cancer be the focus of my everyday life, which it has been.  It's kind of frustrating at times because the focus of conversation that I have with people always centers around my cancer.  I know it's a big topic right now, so it's to be expected.  But it's getting old. 

I am hoping that because I am feeling better, I can sort of turn the change the focus of things.  I can work on school work, so there is that to talk about.  I can work on my crocheting projects, so there is that to talk about.  I can work on starting seeds for my garden this year, so there is that to talk about. 

I suppose it's all how I choose to look at things too.

Plugging along

Yesterday I had my last dose of the Adriamycin/Cytoxin chemo.  This is the heavy duty chemo that really knocks you on your arse, so I am glad I am through with that.  In two more weeks I'll be starting up with 12 weeks of Taxol, which I have been told is the "lighter" chemo.  I hope it is, because I have been through the wringer with this other stuff. 

Finally got all my Christmas decorations down last weekend. It took me two days and several breaks for me to get it all done, but my house is back to normal.  As much as I enjoy decorating for Christmas, it starts to become too much for even me.

I'm heading back to Green Bay on Tuesday of next week to have my eye looked at again.  I had an MRI done on Monday to see if there way any way to see if there was more going on with the lesion in my eyeball than what Dr. Shere can see with his exams.  Dr. Siemers did get copies of the MRI reports, and he said as far as he could tell they looked normal, but I don't think he really went over them that close since he didn't order them, so I will get more details nest week.  I am hoping that Dr. Shere will say I don't have to dilate my eye any more, because it's a real p.i.t.a.  I am pretty sure the inflammation of the uvea has cleared up.  I went without the dilating drops for one day so I could tell if the gray cloud was gone, which is seemed to be.  It was hard to tell if the cloud was gone with my eye dilated because my vision is all distorted from it.  So that is an improvement, which I do hope means I can stop taking the dilating drops. 

I've been off work since Wednesday of last week because I found out I was neutropenic again.  So I basically became a shut-in.  Stay away from people, and no work.   I hate that I have missed so much work because I was really hoping to be able to work as much as possible during my treatments.  I have been using intermittent FMLA but because I have exhausted my PTO/EIB, I don't get paid for those days missed.  So I have not been getting full paychecks, which hasn't been too much of an issue yet.  I need a regular income, though, so I have been thinking about applying for short term disability, which would pay 66% of my total income.  There is the chance that with this next round of chemo, I might be more able to work, which would be great.  However, I still wouldn't be able to get my full FTE in. So I am not sure what the better option would be....pass up the short term and hope that this chemo will allow me to work without too much issue, or take the Short Term Disability for as long as I can.  I need to make up my mind soon, though.  My FMLA runs out soon and that brings up a whole bunch of new headaches.

I am hoping that these next 12 treatments go by quickly.  I am ready to be done so I can focus on bigger and better things.  I'm getting tired of my cancer being the main focus, you know? 

One thing after another..

Last week I called my eye doctor because I woke up Wednesday morning with my right eye clouded over.  I could "see" but it was like through a fog.  A bit alarming, and I was fortunate that he had a cancellation that afternoon, so I was able to get in to see him right away.

I love my eye doctor.  He's such a laid back, easy going, easy to chat with kind of guy.  Even though he was concerned about what he had found (a lesion on my retina) and said he was going to refer me to a local Ophthalmologist, I wasn't freaked out or worried about it because he is such a calm personality.  I appreciate that.

So I went to see Dr. Winkler the next day.  He went through all the same exam as Dr. Webb, blinding me with bright lights, and dilating my eyes.  But he also was able to see what Dr. Webb had seen and he was concerned about it too.  He said it didn't look like a metastasis, which is good.  But it did resemble something called Acute Retinal Necrosis, which is about as good as it sounds.  It's related to the herpes virus, and isn't good to have, so he prescribed me some eye drops and a heavy duty anti-viral medication, and referred me to a specialist in Green Bay.

So Friday morning, our alarm went off at 4am, and we were in the truck by 5am to get to Green Bay for a 7:50am appointment.  I am so thankful Gerry is a confident, and skilled driver, because even in the truck with 4 wheel drive, I would have been driving at 40 mph from here to Iron Mountain.  The roads were just too touchy for me, but Gerry had it under control, and by the time we got to Iron Mountain the weather had cleared up and it was smooth sailing from there on out.

In fact, we ended up getting there an hour early, which was fine.  I was able to get checked in and they went over some of my medical history, so that was all done before meeting Dr. Shere.  More exams with super bright lights in my eyeballs and being dilated.  Eventually he said that he also didn't think it was a metastasis, still good news, but he wasn't convinced that it was ARN either.  However, even so, he wasn't comfortable not treating me as if it was, because if it is, it could result in some major damage to my right eye.  And nobody wants that.  He also found, in the course of his exam, that I had a tear on my retina.  No idea how that happened, but it needed to be repaired or I risked a detached retina, which isn't fun to deal with either.  So he tells me he is going to laser-weld that up, so it doesn't detach fully, and he also tells me he needs to take some fluid from my eyeball to have it tested in a lab for the possibility of a virus, and as a precaution, he's also going to inject a heavy duty medication into my eyeball to potentially kill any herpes virus that may be hanging out there.

All this is done with lazers and needles.

In my eye ball.

While I am awake.

WTF!!!

Understandably, I am nervous, but Dr. Shere is kind of a no nonsense kind of guy.  He doesn't have time for me to be all nervous nelly because he has a long line of other patients he has to see, so I need to put on my big girl pants and suck it up.  So I do, and it all turns out that it's not as bad as I thought it was going to be.  The lazer job took only a few seconds, and he was kind enough to use some numbing drops in my eyeball to help with any discomfort from the needles.  And there was some, but it wasn't painful. 

Of course, afterwards, my eyeball looked like someone had taken a baseball bat to it, being that the white of my eye was all bloody.  And my pupil is still dilated, so I look pretty frightening.  Enough to the point that Gerry was telling me to "point that thing in a different direction".  Ha ha.

So, I'm still on the heavy anti-viral meds, I am on prednisone drops for the uveitis (inflammation of the uvea) and I am on drops to keep my right eye dilated while things heal from the laser work.  Plus it's still bloody, so I am still scary looking.  It's a good time.

I've got to go back on Tuesday for him to check things out and get the results from the lab work on the vitreous fluid he took out of my eyeball.  I am honestly hoping it cam back positive for the virus and that we are on the right track for taking care of it.  At this point, I don't know that I want to deal with it being anything else. 

After my visit with Dr. Winkler last Thursday, I came home and all my energy was just drained out of me.  The idea of there being something major going on with my eye, the thought of having to drive all the way to Green Bay.  Just having something else to deal with besides my cancer.....it was just all too much, and I pretty much shut down for the rest of the evening on Thursday.

Fortunately, Gerry is super understanding, and just let me do what I needed to do, which was pretty much just sleep.  It's amazing to me how much different kinds of "news" can affect you physically and mentally and when it seems to be too much, your body just says "ENOUGH" and turns itself off for a bit.  That's how I felt Thursday evening.  Just like I needed to turn myself off for a bit and pretend that there wasn't anything going on in my life besides just wanting a nap at that moment. 

There was no cancer.  There was no eyeball mess.  There wasn't a "stable genius" in office threatening nuclear war.  Everything was going to be juuuuust fine.

The fact is, it will be.  And is.  I didn't end up working this weekend because I pretty much can't see out of my right eye right now, so I have spent my weekend making sure I am keeping up on my eye drops and anti-viral meds.   I was able to get some laundry done yesterday.  Will finish it up today.  Probably change the sheets on the bed.  I had a successful BM (TMI I know, but seriously...it's big news for me!).  I am thinking about trying to get some Christmas stuff put away. Maybe I'll see if I can muster up the energy to make some bread for tomorrow's chili I plan on making.

Life is always looking to throw curve balls, and I've been catching them for years.  Really, this is nothing new for me.  There is always some sort of a surprise that throws you off and forces you to do things differently.  I'm okay with that, though.  I'm not much of a book smart person, but man, have I learned a lot about life and how to always be prepared for something new to be thrown in the mix.  Always be ready for that change.  Always be ready to change course, because you have to. 

Just always be ready, even if you don't always know what for.

Peace, my friends :)

Chin Up Butter Cup

I figured it was time for an update since it's been so long.   I just haven't had the energy or motivation to keep up on this like I hoped I would, but I am having a good day, so I decided to seize the moment while I could.

Yesterday was my 3rd chemo treatment.  I am noticing a trend that the day after chemo I feel pretty darned good.  Almost like normal.  The day after is pretty close to that too, and then it kind of starts to go downhill from there.  

But today, I was able to go into Marquette for an appointment.  I walked around Vinnies and found a couple scarves and some new lamps for the living room.  Went to my appointment.  Came home, set up the new lamps, did some vacuuming, and tidied up up the kitchen and the living room.  It was good to feel productive instead of  feeling like a lump.  Between the chemo and the virus I picked up, I have just been so drained of any energy and it has SUCKED.  

So it feels good to feel good for a day or so.  

I have one more of the A/C dose of chemo left -- in two weeks -- and then I go to the weekly Taxol treatments which are supposed to be easier to manage.  I am looking forward to that.  I really feel that maybe if I hadn't picked up that virus after my first treatment I would have fared better the last few weeks, but there really is no way to know.  I am hoping to avoid anything more like that, because that is something I never want to go through again.  It was miserable.

BUT...I am doing my best to keep my optimism up.  I'm not going to say it's been easy, but I am trying.

There is a light at the end of the tunnel, and I am hoping that the weekly treatments will make the rest of the chemo time fly by.  Then there may be radiation, and finally the mastectomy and restoration (maybe -- still on the fence with that).  But there WILL be an end to all of this, and then I can turn my focus back on to finishing my schooling and getting my nursing degree and moving on with life!