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.

Chest tube insertion on resus.com.au

This is what was about to happen to me. I made Michele watch this, and she said, yep.... that's what they did to you. So... for the curious... and iron clad stomachs...

My first week long hospital stay!

So... July 15th, I go to work. I have tons of work to do, and on the walk to work, I had to stop twice to catch my breathe. Not very usual for me. Once I got to work, I sat in the office, completing paperwork, organizing my to do lists for the day, and generally  trying to ignore the fact that I still could not catch my breathe. Finally, I call my oncologist. They tell me the triage nurse will call my soon. My breathing gets worse. I call my wife. I ask her to come get me. I call my boss and leave a message ( "Hey there!  Having trouble breathing, I am on my way to the emergency room. Don't worry shift is covered.") I make my staff call in a cashier for the next few nights, just in case I have to be out a day or so. I wait for Michele to show up.  ( see how calm and rational I am... Got a ride, made sure to notify my boss, re arranged the schedule to have coverage.)

Michele shows up and I have her stop at my oncologists office. Triage nurse says, emergency room... do not stop... do not pass go...  do not collect 200 dollars. So off to the ER. We get there fairly early, and I expect to go to the check in counter and then sit in the waiting room for hours. But no... We approach the counter and I can not breathe and talk, so obviously, I can't answer the questions over and over again. They slap some oxygen on me, and wheel me straight into Triage, past the lobby full of people looking to get their drug fixes ( believe me... I saw more known drug abusers in that waiting room...).  They moved me in front of everyone waiting and next I was off to get tests (Xray, Echocardiogram, CT scan). Hours pass as I realize I am about to be admitted to the hospital.

Finally, I am moved upstairs. I assumed that this would be a simple one night stay while they arranged for a thoracentesis.  Little did I know that this was to be the first night of my 7 day stay at the hospital.

Prepping is my family's hobby

You know that show on tv about Preppers? Well... even though we own no tv, out house is the home of two (sometimes three) Preppers as they are called. Most of those people on the show are preparing for civil disobedience.  Some are getting ready for all out natural disasters. And some I think just do it because they are kind of crazy.  Then there is my family.

Two years ago (almost), when I was diagnosed, my wife started on this kick about doing the Bug out bags. Makes sense when you think about it. Everyone needs to be prepared in case of floods, tornado's, and random zombie incursions. As I got sicker, the bug out bags became whole survival kits, complete with car kit, food and weapons. My thought is, if it makes her happy, then I am all for it, even when it becomes a giant box on wheels that takes up the whole back of the SUV. See... if zombies attack... we are ready to get to high ground. We have food for months and whats more, I have saved every medicine that I have not had to finish just in case.

But then there is my version of prepping. While she is worried about keeping us alive and well, I am prepping for an easy transition from active, ambulatory life to a not so active, wheelchair and/or bed-bound life.  Those of you who are friends with me on FB know that we have been working on moving our bedroom. Many reasons behind this move, of course. One, it puts us closer to an exit in case of fire or medical emergency. Two, the room was wired by my brother in law when he lived here, so  it is set up to hold more electronic gadgets than NASA. That way, when Hospice is eventually called in, we have places to plug things. Our Current room has hers and hers outlets (one for me, one for her).  Three, we had to get rid of the sleigh bed. It's too high for wheelchair access, and can't be easily accessed from all sides due to the rails.

So, we picked the bed from Ikea. It is accessible from all sides, has storage for medical needs underneath and is pretty, in a basic kind of way.  I already have a recliner I bought from Habitat for Humanity in the room, and this room, unlike the rest of the house, actually has closets!

You know... you buy an old house and you never realize what you take for granted... like closets. Either they wore a lot fewer clothes, or they didn't mind having rooms crowded with furniture to store things in the Twenties.So we also bought new shorter dressers that will fit in the closet. That way, we can hand pants and shirts above the dressers, and put socks and such in the drawers. This frees up space in the room.

Another bonus is more windows. I am excited to think I can lay in bed and look out at the birds and stuff, so i just ordered a bunch of DIY wind chimes and sun catchers to hang on the porch where I can see them from my bed. Next I think I want one of those Tibetan prayer flag things to hang out there. It's pretty and every prayer helps, you know. Plus maybe some Chinese lanterns that light up to hang around the porch. I may end up with the most colorful porch in the neighborhood, but if it makes me happy.... so what!

Trial over... on with the fun

Well... the trial is over for me at least. The first of this month, we went to Chapel hill for the results of the CT scan and yep, that sneaky cancer has grown. So... on to the next thing. I am glad I gave it a shot though. Even if I still am enjoying the liquid poo even two weeks after the last dose was given. At least I gave it a shot, and maybe there will be a future trial that will be better at kicking cancers butt instead of opening the dam in mine.

So, we are on to Kadcyla, otherwise known as TDM-1. I may or may not lose my hair. I may or may not puke. Actually, the list of side effects says so many contradictory things, I think they just threw them all in to cover their bases; like I may have constipation or diarrhea. I am so used to having my bowels doing one or the other, I have forgotten what normal looks like. Watch me have a normal BM and call the doctor in a panic.

But enough about my butt.

The newest complication is fluid around my lungs. Yep... I can't get comfortable in any position because the fluid is on the lung in the side where i have lymphedema, so when I try to lay on that side, my arm screams in pain. Try to lay on the other side, I think I am drowning and I cough like I am dying. My stomach sleeping days are over, as the swelling in my chest makes that painful and forget laying on my back. I have trouble even washing my hair because laying on my back really makes it hard to breathe. So... in the tub, I lay on my bad swollen side and rinse my head the best I can, then roll the other way and get the other side really quick. Tonight I scared the snot out of myself trying to take my meds. You know how sometimes your drink goes down the wrong tube? Try having that happen as you are swallowing an inch long pill. I spit water everywhere, snorted it out my nose and could not stop coughing long enough to catch my breath. Then Michele had to hold me while I tried to calm down, all the while I am still gagging and coughing. I ended up sticking my head in the freezer because I have found that cold air does wonders when you can't breathe.

So the solution to this... sticking a big needle in  my back and drawing out the fluid. Seriously?!?  I mean really!  I hate needles. Two years of chemo, scans and lab work has not changed the fact that I would almost rather drown in  my own fluid than get yet another monster needle stuck in me. Especially since you are awake and sitting up while this happens. But after tonights scare, I plan to go ahead and ask the doctor about it. How long does it take? how long is the recovery? will I have a little fluid sac attached to me again like the lymph fluid drains? How long will I need to be out of work and geez... how the heck would I get to sleep with that thing in me?

Side effects of the trial and why I have been quiet so long

Sorry I haven't written much lately. The trial has had some side effects that I have been dealing with and they have made my sleeping habits change. Two main things have been going on... Pain and poo.

Every day since I started this trial I have had the POO. I spend hours in the bathroom. I have lost 20 pounds. I have found how to manage it so that I only have it at night, but that means I am up, seated on the porcelain throne till about 3am. And I went back to work on June 2nd, so when I am not working or spending quality time with the potty, I have been trying to sleep. I know... not very exciting, but it could be worse.

On June 28th will be my first set of scans since the trial began. I am excited and anxious to see if it has been worth it. I go every Monday to Chapel Hill for treatment. My blood counts have been great, except for my liver counts, which have been not so hot. At one point they reached 4.6 times what they should be. Bad enough that they were unsure whether to continue treatment, but the guidelines said that my numbers had to be 5 times the normal count for the treatment to stop, so I have continued. How this effected me is that my medication had to change. which brings me to the second thing that has kept me from being online... Pain.

I have been in pain for a couple of months. It started from a spot in my back. It felt like a huge lump. It was so large that the doctors thought it was cancer and were making plans to do radiation on it, but the CT scan revealed that it was not cancer, despite the huge size. It was a huge knot in my muscles. I went to a massage therapist who spent an entire hour just trying to work out the area. She succeeded in reducing the knot which was about the size of a tangerine down to something slightly smaller than a golf ball, but it is going to take a while to work it out.

The problem is that due to my mastectomy, I was trying to compensate for the sore muscles in my breast are by using the muscles in my back more. and I was using one side of my back more than they other, which led to a huge muscle spasm. To top it off, I am suffering from Post Mastectomy Pain Syndrome.

We started by treating it with the usual... Tylenol. That was not strong enough, so we added Tramadol. Then we switched to Hydrocodone/Acetaminophen. But that caused my liver to start acting up, so we had to move to ibuprofen and a different pain killer. All the while, I was fretting about taking habit forming drugs.

I have a huge fear of becoming addicted to drugs. I have a Xanax prescription that I don't use because... well... because working in the retail pharmacy business, I see a lot of addicts. I see people who have fits when they can't get their oxycodone, hydrocodone or alprazolam filled because they can't function without it (or rather, they need the drugs to sell). I never want to be one of those people. It took a lot to talk me into taking any pain meds, and I only gave in when Michele told me I cry and whimper in my sleep which keeps her awake. But the fear of addiction still hung over my head. Thank God for my Pharmacist however.

My RPH gave me four RPH Continuing Education articles on pain medications. One explained what the drugs do, how they work and the pain management ladder. One was about the difference between tolerance, dependence and addiction and the other two were about helping cancer patients through the correct ways to manage pain. Thanks to him, I now understand a great deal more about the medications and I am no longer afraid of becoming one of those people we  retail pharmacy workers hate (addicts).

The stigma attached to taking pain medication is hard to overcome. I am lucky. My staff knows how I feel about medications, and have done everything to be supportive and try to make the move from OTC pain management into prescription pain meds something that I can handle without feeling like it is a personal failing on my part. I understand that from now on, this is just another part of cancer and it is one that I will become accustomed to.

Back to the Trial

The remainder of the week at Chapel Hill was mostly blood work. We had to do blood work every day at particular times. That was okay... I am getting the hang of this. I found a new trick. See, they are going to take blood from my arm in one of three places (Elbow, hand or wrist). And when I feel the needle, I tense up. Then the vein disappears. It's like magic. So... my thought is, if I can't feel the needle going in, I won't tense up and I will only have to get stuck once. Smart girl that I am... I decide that my Emla cream put on those locations will stop the pain. So, Wednesday I put it on the inside of my elbow, the back of my hand and the inside of my wrist, covered the places with gauze pads and went to get the work done. Piece of cake! I didn't feel a thing! Obviously, this is how I am going to handle my appointments from now on.

So, I felt pretty good. Mom and I did some shopping. Marie and I hung out again and went for frozen yogurt. We also swung by her folks old place and talked about the time we all stayed there while her folks were out of town over Pride weekend. That was a great weekend. No great drunken party... just a group of friends chilling in the back yard talking, laughing and enjoying each others company. We drank sparkling water, took cold showers rather than turn on the hot water, used candles and kept it all real low key. What a great memory.  Then my sweetie arrived to spend the night and I got to show her the amazing trick I learned about the dual shower heads (getting a high powered heated massage on both your back and front at the same time is freakin' awesome!).  But poor Michele... Mom snores. I snore. I snore a lot when I don't take Benadryl before bed. She said we were amazingly loud, but mom swears Michele's snores could wake the dead.  Thank goodness we were in a corner room. I can't imagine how anyone in the next room could have slept through all three of us.

Thursday we let mom sleep. I had worn her out running around the day before, so Michele got to go see the infusion room where they take my blood. We met the nice cracker lady (she goes around with a basket of crackers and York mints for the chemo patients) and we explained to her our firmly held belief in dessert as a main course.  I think if I ever start my own religious cult, I am going to make that one of the central tenets of the faith. We must have convinced her, because I heard her telling the next patient to eat dessert first.  Then we went out with Robbie and Marie for dinner at this groovy restaurant. It was like walking into a very kitschy consignment store that sold food. Every wall had a theme (70's bachelor pad, Hawaiian tiki bar, 50's pin-up girls). The food was pretty tasty, but mostly it was just so great to hang out with our friends.

Finally it was Friday and I got to do my last blood draw for the week and go home. I gave my Clinical nurse my notes on what side effects I had and when, then we headed out. I fell into the bed as soon as I got home and slept and slept and slept.
 

Babbling backlog inventory

Geez... I am so slow at this lately! Here it is Saturday (I think) and I haven't finished telling you about the trial. Then I STILL have stuff to write about New York. Now today I went to my Aunt's wedding and then BAM! tomorrow is Mother's day.  Okay... I am tired and in pain because dummy me totally forgot to take my meds with me to the wedding today, so let me give you just a brief summary of what all I still have to talk about.

Monday I have to be back in Chapel Hill for infusion two. The day should be shorter than day one, which is awesome, but the appointment is at 8am, so we will be leaving real early that morning for the hospital and returning really late, But then I have most of the rest of the week off, so I can actually catch up on all my blog topics in my head.

I need to tell you about the last three days of week one which include such highlights as the very retro restaurant we went to, how I am becoming known as the singing patient, the simple joy of writing thank you notes and the snoring competition.

I need to tell you all about why Lennon's should never be allowed in kilts, dancing in glass slippers is dangerous, the joy of napping, chair dancing and the most beautiful thing a bride wears.

I need to tell you all about the DIY wonder wedding I just attended that filled my heart with joy. How a hug can fill the space of almost 15 years apart and how wonderful it feels to be accepted for who you are.

Then I need to spend a whole lot of time explaining why I have the best mother in the whole world.
So... please wait till later in the week when I get back from UNC, and I will do my mandatory resting with my computer and my thoughts.

And for all my readers... Thank you for letting me share these things with you.
 

The day off (Trial day two)

Day two was my day off. I think after attacking and bruising every vein, my body just needed a day of rest. And what a great day it was! Two of my old friends live right down the street from where I am staying, so I got to spend my day reconnecting. Marie came over to the hotel and we went to sit and talk at the restaurant next to the hotel. We talked about love, loss and dealing with getting older. We caught up on ten years of gossip. We talked old friends, new choices in life, old flames and what exactly is love? We talked about the future, the past... the way that the Big C has changed so much. It was a great talk... one of those ones that goes on, goes in circles and goes to your heart. It was exactly what I needed.

Then we went to her rehearsal. Let me tell you a little about my friend Marie... Marie is an Opera singer. Her voice is deep and rich and makes your heart feel every note, even if you don't want to feel the pain or longing she is singing. I remember a performance she did in college of "Send in The Clowns" that had me on the edge of my seat, tears rolling down my face. Her voice somehow finds the shared experience and makes you go through the emotions with her. She sang at my first wedding with Michele. To hear her and Robbie perform from Phantom of the opera is, for me, a breathless experience... so getting to go to any rehearsal with her is a pleasure.

So we went to the church where the small cast is doing what they do. There are two performers for almost every role, and when the whole group sang together, my entire body became one giant goose bump. I could feel the notes under my skin, vibrating every vein, every muscle... and most importantly... every sore and aching lymph node in my chest. I moved around from behind them to sit on the floor in front of them, closed my eyes and just let them sing straight to my sore, sick body.

Afterwards, we went out with Robbie for dessert and yet more conversation. Again, we talked life, love, death and of course memories. It was very cathartic for me.

Then they took me back to the hotel, where we played with the elevator floors. Seriously... I have to figure out how to get some of those floor tiles in my house.

In talking to Marie, we discussed forgiveness and regret in relation to past relationships. You never realize how much of your current life is formed by past relationships until you sit down with a friend after a 10 year separation and look back over everything. How the betrayals stop you from connecting. How your own guilt over your part of the bad relationship help you to build better ones now, or sometimes how you make yourself pay over and over for things that you can't fix. I have often said that the person I was years ago is not anyone I would like to be now. But being that person somehow brought me to where I am today. Would I change anything from my past? Probably not, mainly because that would make the current me a different person. We discussed whether a person ever truly changes. Can a person who does so many wrong things ever change? Or is the essence of you set in stone, and your choice of actions the only mutable thing?  So, if you are essentially a good person very deep down, but you act in certain negative ways at one point in your life and change to a better person as you get older, is it really that you changed, or is it just that the real You is finally taking over? How do you know exactly what the real solid You is?  Can you ever teach an old dog new tricks?


 

Never met a stranger...

I need to take a little time to tell you about this place we are staying. It is an Aloft Hotel.

 This place Rocks! Very Art deco, friendly staff, and I have to say... the coolest elevator floors ever!

Let me tell you about this staff... The valet guys ask about my health every day. One of them gave me a small box of perennial bulbs to plant when I get home.

 The night security guard watches my as I sit on the bench at night.
The front desk night manager makes sure I have 4 packets of coffee for the morning for me and mom. The rest of the desk staff asks me how treatment went, how I am feeling... basically making me feel very taken care of.

The floor in the elevator is way too cool!

 The restaurant next door is perfectly fine with me tying up an outside table for 5 hours while I reconnect with an old friend.
Every day I walk downstairs and feel taken care of. Now I understand why my customers like me so much. It's amazing how great customer service goes from just doing your job to doing what you can to make someone's day special. I will be leaving with phone numbers for new friends I have made here, a box of soon to be beautiful plants and a great memory of what could have been a terrible experience for me.

 

 

Day One of Phase one Trial

I didn't sleep very well Sunday night. My back hurts from what appears to be a knotted muscle around my shoulder blade. So I was up multiple times that night. At 5:30 am, mom and I got up, had coffee and headed to the hospital. I dressed in my pretty blue dress and a big smile.


Me, dressed up in my pretty dress for my first day

To start with, I had to lay in a bed at the infusion center and let them run three tests. I think it was another EKG, but they had already given me the Benadryl and Tylenol that you take with Herceptin, so I was sleepy. I did play with the bed of course... lifting my feet, lifting my head, lowering it... until mom told me to just lay still.

I fell asleep pretty quickly after they started the Herceptin. I only woke up when they came in to put the IV in to check my blood.




Me, laying in my infusion bed

I woke up a couple more times, once from a dream that my Dad and I were in a field of what I first thought were flowers, but they turned out to be large purple butterflies. Mom stayed with me all day. I don't know how she could stand to sit there for 13 hours with nothing to do but listen to the history channel. 
The nurses had to take three samples of my blood. The first time, the IV worked. The second time, it didn't work at all. So, next, they stuck me in the hand. Then... the final blood check we had to wait to do a certain number of hours after the infusion. I wandered the halls, my back hurting, flapping my arms.  Finally, 9pm came. 


Sleeping princess!

The arm IV didn't work. My hand had already been used. Lymphedema in my right arm means we can't use that arm, so the nurse tried my hand again, but it wouldn't work. No veins would show up. *Sigh*... apparently, my veins hide when I am tense. So, I asked her to give me a few minutes.

Years ago, we went to the local Renn fest and we saw a hypnotist. I bought his CD to stop pain. I have listened to them so many times I know the whole starting sequence, and I can relax myself completely. So... I used those techniques to relax and TA-DA!  A vein! Finally!  The day is done!

Mom took me to get soup because I hadn't eaten ALL DAY!  I got back to the hotel with mom, we ate some soup, mom went to sleep and I, having slept all day, couldn't sleep. So... I took a shower. You know... this hotel is so awesome... they put us in a handicapped accessible room. So my shower has a stool and two shower heads. Let me tell you... if I ever re-do our shower, I am putting in a second head on the opposite side. It felt so amazing.

So Far, all I have had as side effects was a little bit of the poopies, some slight nausea and my temperature fluctuates. I was terribly hot... then terribly cold. But that has all stopped in the past two hours. Tomorrow is a day off for me. I have no tests and maybe I can spend my day napping and visiting with an old friend. 





The Trial Begins

On Thursday the 2nd, my Clinical Trial began. Mom and I came to Chapel hill for Thursday and Friday to do all the preliminary tests and meet with the doctors and nurses in charge of the trial. Thursday started with a CT scan, then an EKG and an Echocardiogram.  The nurses who did all these were pro's at sticking me with needles without me noticing. My port, which has not been being used much since August of last year, is acting up. It happily takes fluids, but has no interest in giving any blood back.  The tech doing the echo told me once again that I have a picture perfect heart. Hey... I guess we take what praise we can get at this point.

Friday is blood work, and doctor's visits. I drank a lot of water Thursday night hoping to get my port a little more active, and you know what? It worked!  Thank good ness! My port is functioning again. So the nurse pulls a bajillion tubes of blood and then I am off to the doctor. We go over my CT results, which show that while there has been growth, it hasn't been much growth, even though I have been off chemo for a month.

Then the doctor and clinical nurse go over my other tests. Nope... I am still not pregnant. All my numbers look good except the one about clotting, and that's because they took it from my port. Apparently, they inject this stuff into your port to stop clotting and to clear it out. So... Yet another arm stick. I fell asleep waiting for the nurse to come stick me, and according to the nurse, when she came in, I was asleep singing Margaritaville. Don't ask.... apparently I sing when I am under the threat of being stuck with a needle.

They put us up in this really great hotel. It has a heated Salt water pool!  I was in that thing so fast... it took down the swelling in my chest so nicely.

And That was the first two days of my trial... the testing phase! 

Future project ideas

Michele and I talked a lot on the trip. You do that when the drive is hours of not really exciting scenery and the radio is picking up nothing but static and weird talk radio. One of the things we talked about is our house. See... she doesn't know what she is going to do with it when I am gone. She said she doesn't think she can bear to be in a house that size without me, but she also can't stand the thought of not being surrounded by my preference for Crayola colors in every room. So I came up with an idea.

I still have cans of the paint for every room. I am going to get some canvas from the store and paint a square the color of the room it belongs to. Then, because each room has a purpose or theme ( Like my orange library is really autumn themed) I will add elements to the squares to represent each room, things like small frames in the yellow picture hallway, or coffee related art in the dining room, or eating related things in the kitchen. That way, she can always take the house with her.

Then I thought about how to best help Ryan cope. So, he and I are going to make a memory album. I will take a picture from something we did as he grew up and write what I remember, and he will do the same so each picture will have a story for him to share when he has kids of his own. We already talked about some of the stories and pictures we plan to use.

Any other great ideas out there?

Silliness from the trip

Tara and Sisto had these two dachshunds, Louie and Lena.  Louie usually takes days to warm up to someone. But of course... I think Louie is one of those special dogs who knows when someone is sick. I spent a lot of time napping, and Louie spent a lot of time napping with me.  The day we went to leave, I was having  a lot of pain and apparently was whimpering in my sleep. Tara and Michele had gated the dogs away from me and they were going nuts. Michele told her to let them loose and watch. Both dogs settled down on me while I was napping and gave me kisses till I stopped whimpering from the pain.

 Then we visited a Vodka distillery. Their sign out front was bizarre. I had to go back and re read it just to be sure I read it correctly.