8.05.2013

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 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.

7.30.2013

Aplastic Anemia - Ready, Set, Go

I have been diagnosed with Aplastic Anemia.  This is possibly secondary to Lupus, or unrelated, but it is serrious, 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 fatigue 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 my 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 led to a yeast infection throughout my body.  Add to that, my liver wasn't working, which caused a whole host of issues, one major one of which was fluid in my lungs.  This sent me straight to them 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 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 long, boring uneventful days, and those days filled much of time in the hospital.


1.25.2012

Back in June 2007, I spent some time in ICU on a ventilator. It was a pretty horrible experience. The beginning of January of this year I went into the hospital for some tests and ended up on the ventilator in ICU again. I hated it. I hated the drugs and the isolation. But, the tests came back and I don't have wegeners... So that is good. I should be back at work very soon, which makes me happy.

1.24.2012

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.

4.13.2011

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.

2.21.2011

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.



12.10.2010

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.

12.07.2010

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:

11.30.2010

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?