Open and Shut

I don't write often here anymore.  There are so many platforms for outing oneself these days, Instagram, Facebook, Twitter, online articles, comments containing bits and pieces of our lives.  I try to judge carefully...protecting my family, my future.  I choose very carefully what I share and who reads my thoughts, my dreams, and especially my very closely masked fears.

I miss throwing words on a page, exposed and raw, asking for debate and opinion.  It is a difficult thing to do, deciding what parts of your life to share, and what to hide,  if I want a new job, will my writings hold me back? Can I truly be open with those who don't know me well, who don't understand the world of me, where I came from and why I am like I am.

How do feel about the raw exposure? How do you keep those close to you safe?

Chemo Days

I walk into the room, which smells of alcohol age and despair. I step on a scale, no significant change. I chose a chair and open up my shirt unzipping it to expose the familiar lump in my chest, the port that was implanted for this one reason.

"Take a deep breath and exhale", the familiar phrase is heard. And as I do I feel the familiar sting and pressure of the needle, followed by the metallic sweet flavor of sailing pouring into my veins.  I see the bright red. Blood fill the small endless tubes that. Hold the secrets of me. I pull out my IPod and set it to Make it Rain by Ed Sheeran -  my latest favorite from Sons of Anarchy.

Once my temperature is taken, and my blood pressure, pulse and oxygenation are recorder (all relatively normal) I watch the cold seemingly innocuous fluid drip into the connected to my chest filling me full with literal poison. It will kill cells both good and bad, in hopes eradicating my tired, worn out body of the disease that the s slowly killing me. Isn't it strange to try to cure someone with the very thing that can kill them?

I listen to the words of the song, my eyes closed, trying to be somewhere else...anywhere else but here. As I wait, I wonder...

When this is done, will I be filled with unrecognizable energy from the massive dose of steroids given to me to accelerate the effects s of the medicine? Or will I be blinded, struck down with inconsolable nausea and headache?  Will I be able to do anything with the rest of the day, the week? Will this be the medicine to help? Or will this be yet another exercise in futility?

Dream a Little Dream

I dreamt of you last night.   I kept trying to fall asleep to see if you would be there.

Into the Unknown

I received a call ( well three calls actually) from my hematologist /oncologist wanting to see me. In person. Tomorrow. This has never happened before and I have to admit that I am scared. The calls came right after my last blood work came back. And, they did a lot of different cancer seeking blood work this time. At first I thought maybe she was going to move forward with the bone morrow transplant, but then she ordered a CT scan of my lungs too...the waiting is too much. I'm sleepless and worried. 

Prograf

I am being switched from the evil skunky cyclosporin to Prograf for treatment of my aplastic anemia.  This is a great thing for many reasons (no more throwing up every day, and so much less of the stinky drugs), however it appears that I am going to lose my damn hair AGAIN.  

I just got my hair back. Yet as I look down at the stupid hospital pillow, well...there is my hair -on the pillow instead of attached all nice and neat TO MY HEAD.  I know I shouldn't complain....that I am so so lucky to have medications that are keeping me alive and all that, but give me a break already. I call uncle. 

I'm a Barbie Girl, In A Barbie World

I spend a lot time at the doctors office /clinic now. I have blood drawn once to twice a week to see if I need more blood (perhaps if they would QUIT taking it out of my body, I wouldn't need so many transfusions!). This makes me wish for futuristic times where they could perhaps scan a vein and pick up properties of my blood without having to remove it from my body. But, since that is not yet a reality, I continue to get drained weekly.

This week I am going back into the hospital to have a port put in. This will give doctors direct access to blood without having to find a good vein in one of my arms or feet. They simply aim for a half-dollar sized area on my right upper chest and can get blood there. They can also give blood or IVs the same way. This will be so much less painfull and take a lot less time, not to mention the lowered risk of infection.  I had a port a few months ago, but they were concerned it had been compromised and was itself infected, so they removed it. This was well before my final diagnosis of Aplastic Anemia (which always makes me think of a Barbie doll when I hear it....don't know why-maybe because of that stupid Barbie girl song by aqua.  Imagine the re-write:  "She 's Aplastic, not fantastic")

Today marks a special day on my calendar-I went to the gym for the first time since getting diagnosed and out of the hospital. So....since April. I tried to jog the 4 blocks there and made it one. Then I rode the bike for 20 minutes and tried jogging home - made it 1/2 block. But I did go and I did work out...sorta. When I got home, I had to nap. Too tired for much else. I am guessing my hemoglobin is low, so perhaps I will go get my blood tested tomorrow. Just thinking about all that is involved in that makes me tired!

So I have received an interim solution...or stop-gap that should at the least get me to bone marrow transplantation.  They gave me a series of drugs the refer to as ATGAM which is derived from horses and in some cases even puts the recipient into remission. I am guessing I am not so lucky based on how I feel today, but we will know more after my next blood count. That is one of the worst parts of this disease... Having to wait for weekly numbers to tell you if you are doing ok or if you are headed for transplant very soon. It doesn't sound bad, but the internal turmoil is sickening all by itself!

I am now the mom who doesn't go to other kids games or practices.  I am too tired to go to the pool with them. I cannot cook dinner or even manage to go out to eat. I am constantly battling severe nausea, exhaustion, and chronic pain in my back, legs, all bones really. I am pretty good at laying around and watching movies or watching the boys plays video games, but my current state of existing is not anything to be proud of or to wish for. I would much prefer the bone arrow transplant so that I can be part of my life instead of just an observer.

Aplastic Anemia - Ready, Set, Go

I have been diagnosed with Aplastic Anemia.  This is possibly secondary to Lupus, or unrelated, but it is real and it sucks.  It seems as though I have been sick forever, but apparently it has only been 8 years, since the boys were born. I guess my immune system crapped out after making two perfect, tiny humans. Totally worth it as I watch them play basketball, dance to a song, listen to them sing with the iPod in the car. Worth it, but completely unfair.

It started with fevers and faigue and a lot of unexplained bruising on my legs. That, followed by plummeting red and white blood cells and platelets - pretty much all the stuff in our blood and bone marrow, stopped functioning.  Several bone maarrow biopsies confirmed the diagnosis, done while I was in the hospital in May for fever/nausea/vomiting.  That particular hospitalization was initially for a yeast infection.  And my liver wasn't working, which caused a whole host of issues... Edema in the lungs, making breathing impossible, requiring me to be put on a ventilator.

I don't know if you have read back from 2007, but I was on a vent for a short time - insignificant compared to this, and one of my greatest fears...ever having to be on a vent again.  I had even put in my living will that I wouldn't go back on a vent. Ever.  But when my chances of living are 0-10% without breathing assistance, and much more promising with....you give pause. You give pause and you begin to wonder what will happen to those perfectly wonderful 8 year old boys. You worry about leaving your husband to do everything. You cannot fathom never kissing him again, holding his hand, watching a storm blow in together. You cannot begin to think about missing your daughters lives...everything so finite. And no idea if there is an afterlife.

I am not a religious person.  I have struggled for years with what I believe, but I am certain enough of anything to put bets on what happens when we die. So unless I know I know that I can see my family, watch them, feel them in some way, and still bring them strength and assistance of some kind when they need it most-I am not dying if I have any choice.

This is what I thought as the critical care doctor was explaining my options of vent vs no vent. I looked at Todd and through blurry, crying eyes, I remember saying I couldn't give up...that I couldn't turn down the vent...I was too scared to die and wanted to whatever needed to stay alive. And that...was that.  I spent 10 days on the vent. It was a completely different yet equally horrible experience as in 2007.

I spent over 50 days in the hospital. Which, by today's standards is a lot.  When I came off of the vent and was awake, I had no strength, no muscle tone, no ability to do anything for myself. I had a few weeks where I slowly improved and was transferred out of ICU, and then I hit a wall, or relapsed, or something not so great. I lost my ability to roll over, to get out of bed, to make it to the restroom or bedside commode. I was wearing adult pull-ups and even changing out of those took more energy than I had.

I remember losing crazy amounts of calories. There were times when I would wake up for vital signs, eat something /anything as quickly as possible before falling asleep or freezing out of the covers, and then would be asleep as quickly as I had woken. Then there were other times when I wasn't allowed to sleep for days. Nurses would be in every 20-30 minutes due to transfusions or other high-touch medicine, and I simply could not get a moment to sleep. Those nights would lead into long days of crying, headaches, and generalized shitty days. Luckily there were not too many of the really bad days.  There were a lot of long, boring uneventful days, and those days filled much of time in the hospital.  

It was hard, but I came out the other side.

It's funny in some ways because I feel the same as before, but I have let melancholy slip in and the days feel overwhelming and yet completely boring to the core. When will I feel that I have a purpose again?

Long Time

Apparently I am pretty confident in my memory...to the point where I don't think I need to write anything down these days.

You are gone, and I miss you.

There are birds in the courtyard, some in cages, some wondering on the grass. It is sunny and cool. There is a small Italian cafe on the corner- so out of place, and yet so memorable. This small part of town is an oasis in a dirty, filth- ridden city.

5 Year Old Ninjas

Apparently the age of 5 is one where kids love to push the sanity buttons of those in charge of them. My boys have it down to a science, which is odd considering they still cannot manage button-up jeans. And yet they are the ninjas of driving me crazy.

It is a holiday for the boys, which means they are home all day, which in turn means I am on boy duty. I also have a doctor's appointment at 1:00. They have to come with me. I expect them to melt down on the way there, while there, and also on the way home. I figure if I expect the worst, I won't be disappointed.

Pictures

Me - with new hair. By the way - this wig HURTS to wear. It fits better than the other one, but gives me a flipping headache. Won't be wearing it all the time is all I am sayin'

I guess Todd took this last night with my phone when Roark and I fell asleep. I found it on there this morning. Cute.

Hair No More

I wear a lot of hats now. I have a wig too - but I am having trouble getting used to it. It seems so...bushy. I prefer the bald head I think. The only reason for the wigs is to avoid staring strangers and business meeting freak-outs. My husband thinks formal presentations require hair. At least he thinks it will make people less uncomfortable. I suppose he has a point...however I tend to think "screw all people" so it is hard for me to cave to that. Regardless I have decided to wear 'hair' for meetings. Am weak and self conscious. I am also drawing eyebrows on my face. So stupid...so very stupid.

The boys are great:

Todd is great (and my wig looks better on him than me:

And the girls will be home for Christmas soon:

SLE

I was diagnosed with SLE Lupus a while back. It was a suspected diagnosis for years, although anyone with Lupus will tell you that an official diagnosis takes a long time to get. I have no idea why... I think it has to do with sunspots or alien life on earth. Just my guess...

I have been on high doses of prednisone along with a cocktail of other drugs for the past 4 months to combat all of the havoc SLE throws at my body. The goal has always been to reduce the prednisone or stop it completely, letting the other drugs control things. However that wasn't happening with me, and apparently long term prednisone at those doses is not very easy on the body. So the recommendation was to begin chemo - medium dosage, long term. Many different drugs were discussed, however my doctor decided to start with Methotrexate. I will be taking it weekly - forever, or until we find something better / with less side effects, that works for me.

I am thankful that there are options for treatment, unlike 50 years ago - however I am not thrilled with THIS treatment option. I started taking it during the week (Tuesday) and quickly learned that weekday dosing is not a good option for me. I spend at least a day or two sick, sick, sick, followed by a day or two of being so tired I cannot get enough sleep. This is followed by a day or two of normalcy - and then, back to chemo again. I did the second round of chemo on Friday, and felt ok all evening. Saturday was a mess. Sunday was better. Monday and Tuesday were DRAINING. Today I feel human again. This Friday I have to take it again. I hope this gets easier. The doctor added compazine for this round - which is supposed to help with the nausea. Although, initial research lists nausea and vomiting as a side effect of compazine - I have my doubts about its usefulness.

I am very lucky that what I have is treatable, that I am not facing a death sentence. I am glad that there are medicines available to treat SLE, and that I was able to get a diagnosis before my body was worn out and unable to recover. I am thankful for good doctors that know how to treat this disease, and I am so so grateful for my family and friends for being supportive while I whine and complain about the insignificant things going on with me. I promise to keep the whining down to a soft drone.

So - what does this mean in terms of me, what I do, how I live, etc? Apparently it doesn't really affect it much. I am still working full time, I am slacking at home, but luckily Todd is tolerant of my lack of energy and has been picking up the slack. I don't think I can take advantage of that forever though. I drink a little (although the medication doesn't really support that), and am starting to run again, although exercise has been difficult the past few weeks. I feel flabby and need to at least pick yoga back up again to have some sense of well being. I would ideally like to continue running and maybe get back into swimming - but finding the time is HARD. We are trying to eat well and keep life low maintenance, which is perfect for me. My biggest worry is work...how to spend the time needed on it to be successful without sacrificing my health and sanity. But - this is an issue we ALL face, isn't it?

The Locker Room

I work with a group of frat house boys. Not literally, but certainly figuratively. Every conversation is speckled with expletives and raunchy stories of days gone by. There is an abundance of booze and drunkenness and unbelievably uncomfortable conversations in the evenings. There seem to be no boundaries when they are together. But, it is different for me. I am criticized for either being too engaged, or not engaged enough. It is perplexing.

I spent a few days out of town recently at a team meeting, and ended up sick, as happens when you have no immune system. I didn’t want to go out and play the last two nights and was criticized immensely for it. “Be a team player” “Your co-workers feel like you are distant” “The team dinners and off-time are critical to forge a bond that is needed in this job” and yet told “Be careful what you say” “Don’t get too personal with your co-workers” “keep your distance”. I don’t know what to do with this advice except laugh and call it a double standard, and little bit of bullshit.

This company is male abundant. Most technology companies are. This isn’t surprising. What is surprising is that this is one of the few times I feel a different set of rules apply because I am a woman and not a man. It makes me feel vulnerable and lacking control – something I have tried very much to avoid in my career.

Admittedly I do not currently have much of a filter when it comes to sharing. I tend to just be me. It is uncomfortable for some people, and I suppose I “get” that. But I do understand politics and business how to behave around customers.

What escapes me is a solution. I can get very good at what I do so that the other stuff doesn’t matter, grow some tougher skin, keep my mouth shut, or move on. Money is such a little whore though – and I really like having it so moving on isn’t all that appealing. That makes other fun options less intriguing (like becoming a writer or construction worker).

Sleepless Nights

I lie awake in bed, waiting for the cellophane haze of the Ambien to surround me. I notice that I am always tense; my shoulders, back, neck, hands. My attempts to relax are useless, as if my mind and body have no real connection. I remember a period of time when my brother and I were much, much younger and he was faced with sleeping issues. He would try tensing every muscle and then relaxing them each one by one, trying to teach his body to relax. I have tried this. I have tried meditation. I have tried baths, candlelight, exercise, chamomile tea, reading, television, sticking to a schedule, complete silence and darkness, wine, Benadryl, Trazadone, Tylenol PM, Unisom, ditching all caffeine. And yet, sleep eludes me.

The rare times I am able to fall asleep unaided by medical intervention, I am awake after only a few hours as if I have been asleep all night. This of course leads to three o’clock death march later that afternoon. I am constantly thinking about how to get more sleep. I Google insomnia and read about how it is all psychological, all the while wishing my head were screwed on right. The same advice is everywhere – follow a schedule, get up if you cannot sleep, try not to worry about things before bed, keep a journal, do not drink alcohol or caffeine, get exercise and eat well, stop worrying about not sleeping because it won’t kill you – unless it does.

Because I Told My Therapist I Would Write More...

I wish I knew then what I know now – knew the things I would encounter, the emotions I wouldn’t understand, the advice I would CRAVE. I wish I had queued up a million questions for my mother and forbade her to die until she answered every single last one of them. I wish I had listened to the stories of what I said when I was three, five, eight. I don’t remember those things…the ones that seemed insignificant to me – I was trying so desperately to grow up, not to relish each painful, demoralizing moment.

I see the other side of the coin now. My kids will ask a question, display a behavior, act out in some way, and it makes me pause. I wonder what that means in the grand scheme of their character. I wonder if it is learned, experimental, natural… Did I do that? Was I like that? Were my brother and I like that? How did our mom LET US LIVE PAST 5?

In the car today, after picking up the boys, we were inundated with non-stop noise from both Roark and Cole. They were not saying anything – just trying to get a moment’s notice – some validation that we missed them, cared about them, cared about one of them more than the other one…something. And they clearly were not getting what they wanted. It escalated quickly, causing me to go crazy for 5 minutes of silence which was never to be experienced. It was almost as if they were feeding off of the frenzy of mind-madness I had brought home from work with me. They saw a weakness and went for it. The torture implement was their non-stop noise and poking at each other. All through dinner, all through errands, all the way to an hour early bedtime because I may have killed them if they were awake for one more minute.

I sit here now thinking about what happened… about the testing and trying that the boys put us through and I wonder where I will ever get a leg up. At what point do they decide it isn’t fun to mess with parents anymore? At this point, it is 9:30pm and I am just diving back into hours of work, and by now, I have no patience to think clearly through anything. I just want to veg, go to sleep and not dread tomorrow.

They Just Don't Care

I find myself annoyed with the boys more than I think I should be. They fight, they test me, they complain constantly, they know no other volume than AS LOUD AS THEY CAN TALK/YELL. I don't know if it is that they are five, that there are two of them, that they are boys, a combination of those, or if it's me. God, don't let it be me...

Spend an hour in my home and you will definitely hear one (or all) of the following):

• Take that back in the kitchen
• Cole, CUT THAT OUT
• Roark, we don't use bathroom words when talking about people
• STOP HITTING HIM
• Quit kicking your brother
• Don't tell me NO!
• Go to your room.
• I will NOT ask you again.
• Use your inside voice please.
• USE YOUR INSIDE VOICE.
• LOOK AT ME.
• If you don't use your inside voice, I will put you outside.
• No - You cannot go outside.
• Dude, stop yelling. I am right here.
• Food. IN THE KITCHEN.
• What did you JUST SAY????
• Leave that alone.
• Put that back.
• That is not yours.
• Go to the bathroom before you wet yourself. Good grief!

I have a sticker system (bribery) that I use when they are respectful and kind all day. They are not getting very many stickers lately. They also don't appear to care. I am beginning to think that five year old boys have a type of dementia that renders them unable to associate behavior with punishment/rewards. They also seem unable to remember ANYTHING I tell them for any length of time. Or...they just don't give a damn. How do I make them give a damn?

Boys... AHHHHHHH

5 year olds argue a lot. With each other. With their parents - namely me. Yesterday Cole actually told us that he thinks we don't know anything and his friend Caden in Kindergarten knows EVERYTHING. I didn't remember these things starting so young. I remember thinking my mother knew nothing...but I really thought that started later. With the girls, they hit that mark around 11 and never really grew out of it.

I have also found that school has an additional, yet related "benefit" - the boys will believe ANYTHING their friends tell them. "Montana said his dad stabbed his mom", "Caden said he pulled out someone's eyeballs". They all have a morbid, ridiculous theme, and I kind of hate public school now. Also other kids. Sometimes even mine.

Heavy Drinking

Question posed during a routine health questionnaire: How many drinks per week on the average do you consume?

Outcome: You may have an problem with alcohol. More than 1 drink a day on average could indicate alcoholism.

Thoughts: What happened to one glass of wine a night is a good thing? ONE MORE drink than that and you are an alcoholic?

Todd found an article on CNN.com that supported heavy drinkers - apparently stating that they are healthier than light drinkers. I don't know the context, but the overall I believe his point was that we can find a study to support any lifestyle people want.