A Blank Mind is a beautiful thing

Today I was off from work and had a completely non-productive day. Completely. I did absolutely nothing. Not reading. No arts and crafts. Not even watching movies or napping. I kinda just sat around and nibbled on stuff. And you know what?  I think I really needed that. It was kind of like rebooting my brain. It's now 9:30 at night, and for the first time in months, I am starting to come back to me.

One of the things that is different is the new medication. Yep... I think we hit on the correct combination for the time being. Yesterday I went to work at 7am and worked until 8:30pm. That is the longest day I have worked and remained productive the whole day in ages. I came home tired, but not bone weary, and while I hurt, it wasn't the same constant dragging me into the grave hurt I have dealt with for months. I looked in the mirror and I have color in my cheeks that is not the bright red of me gritting my teeth, but the slightly rosy glow that I used to have all the time. Yes, I still have some bags under my eyes, but give  me a couple of weeks of normal sleep and I may just start to look human again.

It was nice today to not be constantly thinking about how I felt. In fact, it was nice to not think anything much at all. But the great brain is starting to gear up again, and for the last little bit I have actually been feeling the old inquisitiveness sneaking back in. My brain actually had some thoughts about sympathy and empathy and  how they relate to me and how I relate them to the world. Do you have any idea how much I have missed those types of thoughts? My whole life I have spent with a mind that constantly mulls things over, picks apart thoughts, feelings and actions and when the Big C started taking that from me, I think that is when I started to feel most betrayed by my body. I mean, that type of thought process is central to who I am as a person, and to have my mind spending all its time thinking trivial things like "what Time is it? Can I take a pill yet?" was, for me, like not actually living. (on the whole sympathy/empathy thing... I could write a whole lot about that, but suffice it to say, my perspectives are changing).

So... just a quick note to say that I may actually have more to say in the future, and I am excited by that prospect!

The Hospice room

Michele and I have been busy little gals lately. After much discussion, we decided to change rooms in the house. Our original bedroom was, of course, the largest in the house. But, since the house was built in 1920, it had very tiny closets. I guess it just goes to show how different we are now from our great grandparents that we need so much closet space. However, closets were really not the reason for the move. As usual, we are trying to think ahead. So... here was the thought process:

1. The new bedroom is the right next to the living room, thus being the nearest bedroom to the front door. That way, should we have to have any visits from EMS, there will be fewer doorways and turns to get a stretcher in and out.
2. When Michele's brother lived with us, he rewired the house. He had to. The house had exactly one ungrounded outlet per room. Again... house built in 1920... not a lot of plugging in going on. So, in order to be able to plug in his tv with surround sound, his blue ray player, his stereo and all his other electrical gadgets, the front bedroom was seriously rewired. I could probably run NASA through that room with all the outlets and special grounding stuff he did up there. So, when we get to the point of being bedridden and having to have medical gear plugged in, that room is prepared for the worst.
3. Our old room, while big, was very dark. It is positioned in the exact middle of the house with a single set of those huge windows. At no point in the day does sunlight ever stream through that window, and the only view from it is of my neighbors side porch, where I could spend my day watching them sit and watch me. The new room has three windows and is very bright. I can see the whole front yard. I can see the porch swing. At least it's a view.
4. The living room and the front bedroom are separated from the rest of the house by a door leading into the hallway. This makes it easier to keep the animals separate from each other, and also to have a way to put them somewhere when we have visitors.
5. Being next to the living room, when the part I am not looking forward to happens (being stuck in bed) at least I can have visitors and they can have a place to sit and talk to me. The original owners of the house had a wheelchair bound family member and so the doorways are large enough for a chair, and that means I can at least go sit in the living room with guests.
6. We have already finished re-flooring the living room and the new bedroom with laminate flooring, making both rooms easier to clean, smoother for a wheel chair and warmer on the tootsies than the old bedroom, which we have yet to floor. For some reason, the old bedroom's floor is about two inches higher than the hallway, which would have made it a bit harder to maneuver myself around chair bound. We plan to do the floors in that room soon, but I have no idea how to fix the height gap. I suppose it will be time to call out my favorite handy man Mike again and see if he can figure something out.

Since we decided to change rooms, we also changed furniture. We have owned the same furniture in our house for 13 years. Not a terribly long time, but you know, anyone gets bored looking at the same stuff for years. Of course, boredom would usually not be enough to make me get rid of something, because I am nothing if not cheap... ummm... I mean practical. But the bed we have slept on for years is a sleigh bed. Its huge. Its heavy. It is not wheel chair accessible. And, it only fits in the room one way, which would make getting a stretcher in the room hard and getting me out of the bed harder, because you can't access the bed from all sides. To top it all off, last year we actually broke the bed frame. No... nothing fun was going on. We were trying to pull it forward some, but I had forgotten that wedged under the bed holding the center foot of the frame in place were two of those huge under the bed storage boxes. So when Michele couldn't get it to budge, she yanked, and BAM! the wooden side rail ripped out a huge hunk of the footboard. so for the last year, our bed has been had the side rails balanced on cinderblocks, while the footboard has been tied to the rest of the bed with bungee cords (talk about redneck ingenuity!)

We went to IKEA and found a bed frame that is perfect. Under the bed storage is accomplished by four huge drawers which are part of the frame. The frame itself has more support than the sleigh bed did, which was surprising. You would think a solid wood frame would be more supportive, but ever since we moved the mattress to the new bed, those sinkholes that develop after years of two fat lesbians sharing a bed with multiple animals are gone. It's almost like we have a whole new mattress. When I am actually able to lay down to sleep for the night (insomnia is caused by certain pain meds), the bed is so comfortable. The bed has no footboard, which is great, because now if we need to, we have three sides to access. We also bought new dressers that are surprisingly deep. So now we can get rid of the two monstrous dark wood dressers that went with the sleigh bed suite. And they fit in the closets!  Did I mention the closet thing?

At some point, someone put an actual closet in the front bedroom. It is the length of one whole wall, which means it can hold our hanging clothes AND the dressers with room to spare. When it was added, the closet was not constructed to go all the way to the ceiling, which leaves this huge storage area over the closets too, which means no more packing up the seasons clothes and carrying them to the attic to wait till next season. We can just store it above the closet! It had sliding doors, but as anyone who owns sliding door closets knows... those things are tools of the antichrist. No matter how well you treat them, they are going to come off track, get warped and then get stuck. So Michele took the doors off and we hung curtains, which makes the room feel even more relaxing.

I painted this room too (yes... the house that Crayola built continues). Michele loves the color green. She finds it soothing. Green is a very soothing color. Everyone knows that. That's why every doctors office and hospital paints the rooms green. Oh my... my first thought when she said green was "geeezzz... like I don't see enough of that every time I go to the doctor." But she didn't want that kind of green. what we ended up with is sort of Mint Chocolate chip ice cream green. So the room is soothing, minty looking and makes me want ice cream (which isn't that unusual... I always want ice cream)

Since we are prepping this room for the future of my illness, one of the important things for the room was a big comfy chair. One that I can snuggle into, curl up my feet and relax. It needed to be the type of chair that I could sleep in too, for those nights when lying flat is uncomfortable. The hospital has a chair like this in every room for patients and their relatives who sleep over.  When we were at the hospital, Michele asked the nurse where they get those chairs. Turned out that the hospital had just bought a whole slew of new chairs and were donating the old ones to rest homes. We asked to buy one of the old ones, and the man in charge of the purchasing GAVE us one. Just like that. So we now have our very own hospital sleeping chair for me! Aren't we blessed? At least a few positive things came out of that week long hospital stay. And what's more... that just goes to show you what happens when you are the favorite patient on a floor. The nurse who Michele asked about buying the chair had been in with us when we were discussing setting up what we now call the Hospice Room, and she had told the purchasing manager, and ta-da!  we got a chair for free! And it is perfect. It's off white, has wheels, reclines and can even become a bed. I love snuggling in it with my heating pad and a warm throw while I watch Netflix on my computer.

Of course, now the rest of the house is in disarray because we had to move everything that used to be in the room (bookcases, my craft stuff, my office stuff... you get the picture) into the living room, but we are working on it. It's just that we need to do the floors in the other room, so we haven't moved anything else in there yet, and we still need to get rid of the old furniture. So tomorrow, I am posting it on Craigslist, along with the sofa that we are both sick of and some other stuff. By the end of the year at the latest, we will have our house back in order. It's just that when we are off together, the last thing we want to do is waste time that could be spent cuddling with something as silly as cleaning house.  Hey!  I think we have our priorities straight!

Pain, Pain, Go away!

I have been offline for a while lately. Sorry avid readers... I have unfortunately entered the most fun area of dealing with the Big C... Pain.

So I need to spend some time here discussing this because it is a huge deal. I mean like elephant in your bathroom huge. Absolutely no way to ignore it. You can't work around it. There is no pretending it isn't there and the fact of it being there fills every second of the day as you try desperately to figure out how to get rid of it. It stinks. It fills your daily life with unnecessary poop and makes you irritable. So... if anyone had any plans to store an elephant in their bathroom... take it from me... bad idea.

Let me start with describing my pain. To start with... Imagine a short sword with a blade the length of the space from you spinal column straight across to your armpit. It's about 6 inches wide as well. Someone has taken this knife and shoved it into my back starting at my spine and ending in my armpit. It has been shoved underneath my shoulder blade so that whenever my mystery torturer is bored, they can wiggle it up and down and back and forth causing my shoulder to feel like it is being yanked out of my back.

Next... a group of pygmies have shot about 15 red hot stone hot arrowheads into my armpit. The arrows run from the top of where your armpit arm grows all the way straight down to where your last floating rib is located. Also, these arrows are hollow so that they can be filled with fluid, and on days when it is raining or going to rain, the pygmies inflate the area under my arm so that I cannot lower my arm the entire way and I walk as though I am about to break into a one sided version of the Chicken Dance.

Meanwhile, some very cruel person slit open the right side of my chest, inserted about 15 jellybeans, 7 coffee beans and 8 skittles, plus a nest of fire ants. So my chest burns, tingles, swells and has all these little lumps and bumps that hurt when I lay on them, or touch them, or wear anything that touches them, so I spend a lot of time topless. Then as a final indignity... there is an evil person with a voodoo doll of me who keeps sticking me with knitting needles at random times of the day. It comes out of no where and suddenly I am grabbing at a spot, gasping for breathe and growling because as quick as the jab came, it is gone.

All that is on the right side of my body. I bet good money that other stuff hurts in other places, but it probably can't make itself heard above the howls of these various pains. And yet... I still get out of bed every day. I still go to work. I still try to do something... anything... other than just lay there. Truthfully though... when I don't have to be at work, I sit in a chair with my vibrating massager and stare off into space, trying to meditate the pain away. I can't concentrate on anything. Every second of my day revolves around trying to keep the pain down to a dull roar. I have no interest in anything lately.

So today I talked to the doctor and we are going to try stronger meds. Those of you who know me well, know how I feel about pain meds. I hate them. I hate feeling out of control. I hate not being alert and I REALLY hate having to depend on a pill to function. But what I hate more than that is this lack of a life that I am existing in, where all I do is wait until the next time I am allowed to take a pill. So... I start my new regimen tomorrow. It will take about 7 days to see if this is effective, and if it isn't better in 7 days... I am not waiting... I am calling and saying "What's next?"  I can't continue to live like this. It makes me grouchy and impatient and totally uninterested in other people, and that is so unlike me. Maybe I have been snatched by the pod people?

My Best Friend's folks

My best friend's mom has the Big C. She is also stage 4. Unfortunately, her situation is more advanced than mine, and they are calling in Hospice. Is there anything more frightening for a terminally ill person to hear than those words? Calling in Hospice means your limited days are even more limited. Yes, Hospice is a great help, and we are all grateful for what they do, but still. I feel so horrible for her mom and her whole family. Wasn't it just yesterday that I met that crazy little woman when I came to visit her with my new college room mate? How could 23 years have passed so quickly?

I worry about my bestie, but truthfully, I worry about her dad most of all. I adore that man. The first time I spent any time with him was when we were going to a family reunion and we sat in the back seat of the car. He spent half the trip poking me like an annoying little brother, then denying the whole thing. He laughs a lot. He has a big heart and a big sense of humor and a huge worship of his wife. How is he going to survive? I know he is an active man, but even so... how will he continue to do what he does when the other half of his comedy routine is no longer there to be his straight man, as it were.

Of course that takes me back to thinking about my other half. I know she wonders the same things about herself. How does one go on when half of your soul is missing?

Woolgathering

Well lately I have been doing a lot of mental wandering. You know how you find yourself staring off into space, not really thinking of anything, but instead you are thinking about everything? I have spent a lot of time doing this. So much so that My darling wife was getting worried. But there is nothing to worry about. I have just been woolgathering.

I think about the close call I just had. My lungs were so full of fluid that when I saw the CT scan, all you could see was fluid, with less than a couple of inches of lung left on my right side. I was literally drowning in my own fluid. Just a little more time and I could have died. That's a scary thought. I mean, I know that I am facing the Big C which ultimately will result in the same thing, but I just wasn't expecting it so soon. Luckily, we caught it in the knick of time.

I think about what my future holds. How many more close calls will there be? What, in the end, will be the end of me? Will it be something like the fluid build-up? Will it be a heart attack? Or will I just waste away slowly?

I think about the fact I never had children. And I wonder if that chance is gone. I mean, I know I can't carry a child, but could my eggs be saved and maybe make a child later? Would that be something I should do? Who would have it? What would become of my mini-me? Would that be fair to the child?

I worry that my days being a productive member of society are numbered. How much longer can I have a normal life, one where I go to work, come home and live like everyone else? When will I be forced to stay home, and what will I do with myself when I can't go out to work everyday?

I think about what other loose ends I need to take care of. The re-arranging of the house to get ready for the time when I am homebound. Where will I find the energy to do it all? Am I burdening Michele with all the things that need to be done to get ready for when I do become an invalid? I mean, I know that we have started early getting ready for it, but it just seems that the past month I have gotten very little done. Of course, I have been sick. Really sick. And really sick for the first time. None of the other chemo treatments have made me as ill as this whole fluid thing did, but then again, none of them put a huge hole in my side, or caused me to depend so much on pain meds and sleep as this has.

I feel like all I do lately is sleep. And I understand I need the sleep to heal, but I sometimes feel like I am sleeping my life away. Is that really a quality life?

Random thoughts on family

Oh thank goodness!  I am out of the hospital finally, and I am way too happy. I have to say, for my first ever long hospital stay... it wasn't so bad. I know what to have packed for my next trip, which is a valuable thing. It would be silly of me to think I won't have another hospital stay. Not that I want to be in the hospital, but when your cancer gets to a certain point, hospitals become a part of your life.

Speaking of things that become a part of your life... Can I tell you about my HUGE local family? I have a huge family. So many sisters and brothers who I found later in life. Yep... my family is a lot bigger than blood. Funny how you never realize that the friends you make through the years gradually morph from work colleagues and school associates to best friends and family. Well, while I was in the hospital, my extended family jumped right in to help take care of me. They came to visit to give mom some time off to get some sleep. They watched over me while Michele had to work. They brought me presents, sent me flowers, kept me in juice and helped me change my pj's.  So many little things that meant so much to me, Michele and Mom. How did I get so lucky to have so many amazing people in my life?

It's funny to think how family becomes something hard to define when you are going through something like the Big C. I know that my family has grown and extended. I am so lucky to have so many people who care about me. It amazes me to know how many people worry about me. I stopped by work to pick up some prescriptions and my boss lady was there. While I was talking to her, customers were walking up and hugging me. Not saying anything, just hugging me and walking away. How did these people become so important to my health and well being? When did things change from just a working relationship to something more?

 

The procedure

Yeah... If you were brave and watched that last video... more power to you. I haven't, and you know what?... I am not going to. I won't even let Michele tell me much about what happened.  Instead, I will tell you what I do know.

After all the tests were done and I was placed in my room, I met with the team of 4 doctors who were making the decisions on my behalf. They explain my choices (not many), the possible outcome and the consequences of inaction.  I decide to go through with the chest tube vs. thoracentesis. 

Tuesday begins with the procedure. I am first given 8mg of Dilaudad.  This is something I don't like. Why... I don't know, but my last coherent thought was me telling Michele I hated the way this made me feel, and never wanted to experience this again. When I finally wake up, I am wearing different jammies and I now have a tube coming out of my chest on the right and my port accessed on the left. The tube stays in until it slows down draining. I am informed that I am currently on my 3rd vac seal container. They have already drained over 3 liters of fluid from that cavity.  I am terribly sore, still can't breathe and need many more drugs.

The next day, they leave me to drain. I ask how much longer, and I am told they are going to be doing something (they explained it, but after all the drugs they have done to me... I don't follow). Just relax.

Thursday they come back with that horrible drug, and the next thing I know, I am in the room alone trying to get to the bathroom. They brought me a portable potty.

Friday they bring that bad drug and again... I come to and I am wandering the room, trying to clean things up.

Saturday night, the doctor shows up late and YANKS the tube out.

Sunday, doctors check in on me, I sleep a lot and we discuss me leaving.

Monday I go home. I now have two whole new pages of scripts, a nebulizer coming, four doctors appointments, and I still can't return to work because I have a hole in my chest.

I will elaborate later.