Friday, February 21, 2014

62% me

Yesterday was the first day so far that I've felt semi kind of sorta normal ish.

I am struggling with leg weakness - my right leg is bloated because of the blood clot. My left leg is sad because it isn't getting enough exercise overall. Walking from my bedroom to the bathroom requires a sit down on the potty before I take a shower. Exiting the shower requires an immediate sit to recover. Coming down the stairs is exhausting. Going up the stairs is exhausting and a half.

Yesterday I filled the wood stove several times, kept the fire going all day until I fell asleep around 4pm and it burned out. I loaded the dishwasher, but had to sit down in a chair in front of the sink to do so, but hell motherfuckers I did it. Sorry for the language but I felt like a giant fist pump, a double fist pump up in the air with a rebel yell after doing it.

I'm not sleeping well at night - some of it is lower back pain and leg pain. Some of it is all three of my dogs are acting like idiots throughout the night and their shenanigans are keeping me from falling asleep, or waking me up at varying points in the night which leaves me frustrated.

I think I sleep for 2 hours at a stretch and that's good. It is sad that I think that is good.

Today I had to go over to Ipswich to have some blood drawn, again, and my friend picked me up and took me. We had a nice trip and lunch at the Agawam Diner ...

It was the first meal I've had outside of the house since Doug, Dave and I went out on the Tuesday night before all hell broke loose.

It was so nice to have a bowl of clam chowder and sit in a booth at a diner with a friend.

Today, I also made cookies with Geoff. I sat for most of the process but we had all kinds of fun together with the blender and ingredients. It was really fun to do that.

I didn't take a nap.

So I'm about 62% me. Pretty much. Looking forward to hopefully being ... 70% me soon.

Tuesday, February 18, 2014

Fear of dependency

I am thumb typing in the dark while doug and dogs sleep. Any mistakes i will come back and fix later. It is about 4:45 in the morning. I have been trying to sleep since about 10 pm. I rarely sleep through the night. Three dogs in the room and they play blanket roulette.  Gonzo has specific spots he likes to be in and if brodie is in that spot or too close to it he whines.

Jack sometimes wakes up and stands next to me and wags his tail in adoration.  This knocks things off the bedside table. Eventually i pat him and he goes back down on the floor. My hand still on his furry head because i feel like i should touch and love him as much as possible before...  you know.

The past couple of days my lower back has been in horrible pain from being in bed or on the couch. I am trying a series of physical therapy exercises that my good friend marcia taught me. This seems to be helping. I am weak and uncomfortable all the time and i am officially sick of feeling awful.

Tonight between unhappy dogs, one foot that was ice cold and refusing to warm up even with wool socks and a hot water bottle, muscle spasms, restless leg syndrome, and anything else that wanted to bug the shit out of me i just couldn't take it anymore.

I have been trying not to take the prescription pain medication because i am not in pain. Instead i am just taking tylenol for discomfort.  The surgical area feels good.  It is the entire rest of my stupid body that is uncomfortable at this point.

I got up at about 3 am and took one percoset. My feet warmed up. The muscle spasms stopped. The twitching stopped. I slept for about 90 minutes which was nice. Now i am awake again and the twitching is starting up agin.

This worries me. I am afraid that maybe i am developing a dependence on the pain killers or something...  and i don't want that to happen obviously.  It may be unrelated... but my mind jumps to these conclusions often.

I am going to try to go back to sleep for a bit... fingers crossed. And i hope my mind stops thinking about addiction.  Please make my brain stop for a little while,  okay God.... ? Thanks

Friday, February 14, 2014

how does this happen every blasted time?

A few weeks ago, Geoff went camping with the boy scout troop. I took him out that week and we went shopping, bought a ton of cold weather camping gear. Long underwear, wool socks, the whole 9 miles (not even 9 yards, 9 whole miles).

He is going snow shoeing with the troop this weekend, which is all fine and good, except that now we can't find any of the wool socks, long underwear, nothing.

How do you leave for a camping trip with all these clothes on your body, and come home and have no idea where everything is so you can pack for the next trip? I'm not the clothing police, for crying out loud.

And I'm not able to go out and buy more long underwear (because of my post-surgical situation) and I'm not ABOUT to because this stuff is in the house somewhere. For crikey crying out loud. what the barf?

"be prepared"

No infections... and some nice findings

We spent 5 hours yesterday at the hospital in a blizzard for me to have a CT scan to find out I have no infection internally. I have a high white blood count, and feel like someone beat me with a shovel. I get light headed, dizzy, woozy, nauseous... and these are not good things to be post-surgery.

I won't say it was a waste of time. Instead I will say I'm relieved that we went and we know that at least... I don't have infections.

I have to monitor my temperature and make sure I don't develop a fever because that's a great big fat red flag that I do have an infection.

Guessing this is the process. One day at a time... pace myself... it'll all be okay eventually.

One of the side effects of the surgery is I seem to have lost a great deal of weight. I am 17 pounds lighter than before. I asked my doctor how much the uterus weighed so she looked it up in pathology. Not even 3 pounds. That blew my mind. I thought for certain it would be at least 10. I can feel a total difference in my lower middle self, and I think the happiest part of me has got to be my bladder. Over the past several months I'd started to develop a noticeable  stress incontinence. I knew it was because of the uterus, stupid and big as it was. Now that it is out of the way my bladder is the happiest little organ on earth. I do not wish to overshare on this topic, but let's just say... this is joy.

Wednesday, February 12, 2014

The home and healing journey

I got sprung from the hospital on Saturday afternoon. A day earlier than my doctors anticipated I would. It was wonderful to come home. Not so wonderful to not have a bed with buttons that sat me all the way up so I could get out of bed gently and without agony.

Sunday I felt awesome.

Monday night I got dizzy, nauseous, light headed, and almost fell down the flight of stairs coming down for dinner. Doug had made a pot roast, and the smell of it made me sick to my stomach.

Tuesday was kind of the same thing - sick all day on the couch. Moments of feeling okay followed by walking and nearly passing out.

Today I had my sutures removed, which I thought would instantly make me feel better. It didn't. My doctor ordered blood work, thinking maybe I'm anemic. But they couldn't get any blood out of me. We decided I'd go home, eat, and drink as much liquid as possible. Four pints of ginger ale and a couple english muffins later we went to the lab. I almost passed out in the hall, and they got a wheel chair for me and brought me to the emergency room with me complaining that I just wanted to go to the lab already, please don't talke me to the emergency room....

We had the blood work done instantly, hydration is a great thing. I got a call from my doctor saying my white blood count is very high, so she's worried that we have an internal infection. She would like me to have a cat scan to see if that is so.

Problem is now I have to go through my insurance company to see if they'll cover it, because this hospital is out of network, or if I have to go to the preferred hospital. And then tell my story over and over, and go through stupid everything over again.

I just want to go back to the original hospital. See the doctors who did this. I'm sick of insurance companies and banks and getting railroaded by stupid bureaucracy crap.

But that is beside the point.

Long and the short of it is... I hope I don't have an infection which is causing me to feel this way. But if I do, I will end up re-admitted to the hospital, poked and prodded again. And I just want to rest.


Saturday, February 08, 2014

Homeward Bound

Glad this chapter in my history is over - I will be headed home shortly. Doug has taken the bulk of my stuff out to the car except for me, my coat, my laptop... and in a few short hours I'll be home on my couch, happy.

Blood giving, Blood getting

When I was in youth group in 1983, a bunch of us decided we would go donate blood. One of the guys said that he'd done some reading about how so few people who can donate do donate. He thought it would be a significant community service, he thought it was a great way to do something for your fellow man. To him, he said it fulfilled a mandate from Jesus. You say you'd lay your life down for your brother... but will you give him life to keep him alive.

This guy was always extra deep and saw things in ways that I never really did. I thought it was gross to stick a needle in your arm and take blood out of your body to go somewhere else. He was one of "those boys" who thought deep thoughts and said beautiful things and always made me believe that there HAD to be a God if there was one person on earth who would have the ability to see and sense these things and share them with us all.

It was really the first time that I'd thought of this as that kind of sacrifice. It is one thing to hold the door open for someone or give three hours to the food bank or the trail cleanup project. But another one entirely to give your life's blood to someone to help keep them alive.

It began to sound to me like a sacrament. Defining a sacrament, the dictionary says it is an act or rite in the church that is regarded as a visible and outward sign of inward grace. In most churches (I know this of the Presbyterian church) there are two sanctioned sacraments: communion and baptism. In other churches it is expanded to include matrimony, confirmation, ordination, and unction or last rites for the dead. In other churches, it is expanded even further where many acts are considered sacramental.

It is probably really disrespectful of me to some powers and stations above my pay grade to think of blood donation as a sacrament, but it is a concept I've held on to for 30 years.

We all went and donated, and I felt sick after and frightened like a small rabbit before and during, but also felt like I'd done something so secret and powerful that it made me cry. My blood would hopefully go to someone somewhere who needed it, and maybe save a life.

When I first started donating it was the pre-HIV years, the years before super safety screening and limitations on who can donate... people with piercings and tattoos were eliminated. Fewer and fewer people were donating as time went on. So over all these years, I've made it a point to donate at least once. At least. Sometimes more often...

On Sunday of last week, my doctors ordered a transfusion of 2 units of blood for me prior to having surgery. My blood counts were low, and numbers being what they were combined with the fact that I had a tremendous bleeding episode, they felt I should have this procedure.

When the nurses came with the bags, the "units," they go through a paperwork and confirmation that I am me and the donor number matches up, and it is almost a ritual.

They read and repeat things back to one another. And when they read "Donor Identification Number" it crossed my mind that my random number has been read aloud in hospitals over the years, and a recipient has heard my random donor number...

and I prayed for the donor, thanking him or her for their time and gift.

Someone else's blood came into my body. Someone's gift of life and time was handed to me.

For me, this was all rather moving, and I almost cried a little but didn't want the nurses to think I was crying because I was scared or a baby. I thought it might be harder to explain to them why there were tears.

Tuesday, February 04, 2014

super heroes

I'm so lucky.

I have the goofiest friends. Tonight Doug and I were sitting here and two of the scout moms (and fellow scavenger hunters) showed up at the door with non-alcoholic champagne, dark chocolate, and toys for me to play with.

We had a toast and told the uterus "you're fired!" and asked it to leave the building. We were howling with laughter at one point, and it was the perfect way to spend the evening. I wished 90 more of my friends (or more!) could be here tonight with me and we could laugh and joke and be ridiculous. We were super loud, and I hope we didn't piss anyone off on the floor. My nurse didn't tell us to keep it down... and she enjoyed some chocolate.

Tomorrow's cleaning lady may be confused when she hears the empty bottle banging around in the trash. I don't care. I have a smile on my face that won't quit.

Surgery is scheduled tomorrow at 12:30pm. I am ready for sleep. Last night's super long rough night hopefully won't be repeated. I know this time tomorrow I won't be as ebullient and happy as I am right now so I'm relishing this joy. 

Across the hall

Last night, the woman across the hall was in incredible pain. She's got something wrong with her spine, her back, something. And they were trying to get her to pee. She hasn't been able to pee, and now she's on the verge of a bladder infection. So. Nurses come to her at like 11pm with the doctor's orders and the screaming begins.

She doesn't WANT to pee.

She doesn't HAVE to pee.

She'll pee when she feels like it.

She doesn't want to accept that she will get a bladder infection most likely if they can't get her bladder emptied out.

And then they tried a bed pan. And screaming. So much screaming.

So they stopped and asked her if they could catheter her, and she said yes.

And then more screaming. And screaming for help because they were abusing her.

Now, they were not. but she was in incredible pain and distress.

Two hours of effort, the doctor was here, she wouldn't listen. Nothing was working.  I think they finally sedated her or gave her something so she could fall asleep on her own, or she passed out.

I don't think I've ever prayed for someone like I did last night. I won't say her name, but hold the little old lady across the hall from me in your heart today. I hope she has a better day than night.

Mom Vacation

People have commented to me that being in the hospital while you FEEL alright, even if you AREN'T totally alright is kind of like a vacation. Someone told me to enjoy my "mom vacation."

Okay, I'll buy that. I know my kids are cared for, they're older and handling things well. Geoff isn't an irresponsible kid who isn't going to go to school or use this as an excuse to not do his school work.

Being away, at this stage in their life and our family is alright. And yeah... it is a little bit vacationey. I have a room to myself, people are waiting on me hand and foot. I hit a buzzer, and someone shows up and helps me with whatever I need help with. The food is decent. Honest.

The only thing missing are mimosas and pedicures. And a hot tub. The only thing this spa vacation should get rid of is the IV and the blood drawing. Oh, and the neighbors in the other rooms.

Next best thing though has been my girl Carrie who has brought me delicious lunches, and a bunch of lovely self-primping things and Burts Bees and happiness to apply to myself. I took a lovely shower (it was comical to see me once I realized I was wearing a T-shirt and had no way to get it off over the IV cord.

If I didn't think we'd get totally in trouble or something horrible would show up in my blood work I'd gladly have our picnic lunch with cocktails.

Feet are up. Law & Order on the tube. hanging tough.

A day of many entries, me thinks

So I'm biding my time waiting for tomorrow. From what I understand there is a magic number of 30-40 or 35-45 somewhats balancy thingies for the heparin count that we're trying to get to. Yesterday all day, too low. This morning... too high.

Adjustments were made, we await 2 solid readings where I am in the window and turn off the heparin.

Surgery should be tomorrow morning. Haven't seen my doctor/s yet but ... it should.

Anyway, while I wait and i have this laptop and there are things swirling in my head, I may just write a bunch of entries, and preschedule them. That should keep people entertained while I cannot entertain them.

Wherein the Great Procrastinator gets her comeuppance

I type this in the dark in my room at the Hotel. And by Hotel I mean Hospital.

Thursday of this past week I had the second ambulance ride of my life when I actually called 911 on myself and had them come and take me away. Not because I'm losing my mind, but because I'd lost an incredible amount of blood thanks to my inability to sit down and schedule surgery.

Long time readers know that the uterine fibroid I carry within my awesome body has reared its ugly head in the past, but this was like no other head rearing. No, sir. A  couple light months of it doing its thing combined with the blood thinners I am on for the clot in my knee resulted in me nearly bleeding to death.

Actually, I'm not sure I was bleeding to death. I was probably going to survive the day and in fact if I had NOT called 911 I would have been at work today just pretending that Thursday was a bad day and I was glad I stayed home because WHEW! If that happened in my OFFICE! wow.


But...Something in my head said "I think that we're in trouble, and this is reaching unmanageable levels and you had maybe honestly seriously consider calling for help."

I called Doug instead. I said "If I were to need an ambulance what would you say about..."

Doug's reply was "hang up the phone and call the ambulance and I'm on my way home. Goodbye. Do it. Now."

So I did.

The rest of those last few moments at home Thursday afternoon are a blur of my daughter trying to get three dogs upstairs to lock them in my room, a grumpy lady cop, a helpful lady EMT, several male officers, firemen, ambulance drivers all in my living room, me trying to walk outside barefoot and them insisting I sit down and put shoes on ("but, it's a waste of time and I just want to ambulance...")

I know I passed out in the ambulance.

The ambulance guy asked me a million times what day it was and I told him "Fucking Thursday alright already, Jesus, stop ASKING me that look at your CELL PHONE" before passing out.

I apologized to him for swearing at him.

The hours that followed in the ER were painful, bloody, and vomity. I actually was vomiting for the first time in forever because of pain. IVs, drugs, towels, nurses holding me and putting cold compresses on the back of my neck, my husband arriving... these things all blended together.

At about 6pm I told Doug that I was worried that Geoff would be disappointed if he didn't get to Boy Scouts, and asked if I should call around for a ride for him. Doug drove him and arranged a ride home.

I cried and cried and cried because I couldn't believe I had gotten myself into this position. Why didn't I just sit down months ago and schedule the hysterectomy? What was I thinking? Why am I so unfocused on my own physical well being and always focused on others...?

The ER doctor had a beautiful tie on and his hands were very warm and comforting.

A good friend of mine is a surgical nurse at this particular hospital and she arrived and hugged me, held me, cried with me, got the run down from the other nurses, went and got the OB/GYN doctor on call, had a meeting with her, had her come to me.


Bleeding stops.

Relief of pain.

They bring me upstairs to my room and admit me. Why are they admitting me? I just want it to stop the bleeding and the bleeding stopped, right? You can send me home now. I am fine! I am fine! I am fine! come on!

But no. I have an ultrasound.

They state we have to "evacuate" the organ. So they give me drugs to recreate what I was just going through. It is awful but feels more in control than what I was feeling at home. Not sure how much of that was the drugs or me gaining calm and relaxation, and understanding.  Thursday night was rough but that controlled chaos with an IV to dance with, nurses to hold me, eventual sleep, and relief of cramping and cessation of bleeing.

Friday: Insert a cardiac filter called a "greenfield" filter to keep any pieces from the DVT clot in the back of my knee from moving up to my heart should they decide to go on an adventure. That filter has a 2 month shelf life and has to be removed by the end of March.

Friday: Another ultrasound. Shows that nothing really has changed on the overnight, there is still a lot of blood. Schedule D&C to evacuate the uterus of the blood that is still in there. Send samples to the lab to make sure that I am not full of cancer or extraterrestrial DNA. I think the later may be true.

Saturday: Meet with hematology about the clot and how to treat it immediately. The last medication I had was Wednesday, which means the clot could be all "I'M GONNA GET BIG AGAIN AND SWELL UP YER LEG STUPID!" so they put me on Heparin and are monitoring my blood levels every 6 hours...

Sunday: No action, keep Christine still and happy and let the Heparin do its thing.

Sunday: Watch the Super Bowl and question every reality I'd held about football over the past couple of months as Peyton Manning is eaten alive by the Seattle defense. Congratulations Seattle, you deserved that. 

Monday: Schedule hysterectomy for Wednesday.

Monday: Huge chinese food feast brought to me by Carrie which we spread out and enjoy and laugh and  make all the nurses jealous because we know how to party up in here.

Monday: Two units of A+ blood transfused into my body. All those years of donating and I get a little bit back. Hmmm. Lots of thoughts around that process.

And that is where we find ourselves now. What comes next, now that I have extraterrestrial DNA and radiated super spider blood transfused into my body? What kind of shenanigans are we going to get into?!

Tuesday: Wait for pathology on that blood sample stuff and that extraterrestrial DNA I might be carrying. We have to know. Mandatory, you know.

Tuesday: eventually stop the Heparin, not sure if it is 6 or 12 hours prior to surgery, but we turn it off so my body can reclot things if necessary on Wednesday.

Wednesday midnight: No food or drink until further notice.

Wednesday, not sure when: Escort the Uterus to the nearest exit, bid it farewell, and get the hell on with my life.

Thursday, Friday, Saturday and maybe Sunday... recovery here.

Monday next week, home to recover there for about six weeks.

That's our game plan kids.

And all of this comes to today, to this day, to this week, because for the past three years I've had the talent of saying "I'll do it next month. I'll call the doctor and get on the dance card after we do this thing..." What thing? oh, camping, or canoeing, or packing for four months, moving for 2 months, oh a Barenaked Ladies Concert in the middle of the summer. Twice! Can't miss that! Oh and then the unpacking. oh! and holidays and I have this nice new contractor job that I do not want to lose so I can't say "I need to vanish for six weeks or so, is that okay?" and they keep renewing me month after month and I keep accepting because work! money! fun! happiness!

Oh I have what? I have a uterus that wants to kill me? Oh it's not so bad. It is one day a month really and I'll just tell my boss I can't come in on that day and look how cool she is and understands! I am so lucky!

Maybe they'll hire me as a full time employee and I can take Short Term Disability about six months after I start working there because I think that would be fair and ethical. None of this "Oh hey, you hired me Monday but next Tuesday I'm outta here for six weeks! Suckers!" No. Not me. A good person would work for like 6 months before dipping into the benefits package like this.

But no.

All the factors and the lining up of ducks in their little rows and the "maybe this'll happen" and "Oh, this month it fell on a weekend so I didn't miss work!" or "Hey! It fell on New Year's Eve and I have the next day off!" None of this wrangling and getting to the point where the next 3 weeks could be lived "normally" as going to happen again.

The decision was made FOR me, to stop putting shit off and take care of myself. To be honest, it is the best time of year to be laid up for six weeks. February and March are not my favorite months. So okay, I'm cool with that...

The only thing I'm not cool with is no income. I don't know where that stands, and am not going to blog about my hopes, dreams and possibilities because they may not come true. I don't want to set up for failure any possibilities I would like to see happen. Suffice to say, whatever happens happens.

I'm in a hotel hospital. I have leftover chinese food in the fridge. Ambien is an amazing drug.

More later.