Infusion Week Flu

It’s been a long and interesting week.

Sunday I started the Santa Hustle Half Marathon at Cedar Point.  I didn’t finish (and I’m even more glad now than I didn’t than I was before) but I started, and I made it half way.

Monday I made it to work.

Tuesday I had before and after hours work to do (and I HURT from the race) so I worked from home.

Wednesday was infusion day.  Was feeling pretty decent by Wednesday.  Afternoon was my infusion.  They did a blood draw before the infusion (my quarterly blood tests) and then my infusion.  I had cookies and Gatorade.

A couple hours later we went to Walmart and I started to feel horrible.  Stomach ache and exhausted became EVERYWHERE aches and freezing and exhausted.  EVERY joint screamed.  I hurt from the end of my toes to the most horrible not-migraine headache I can ever remember having.

Bad enough I called off work Thursday morning and went to the doctor.  I vaguely remember being there. I had a low grade fever.  I vaguely remember walking to the car after my appointment.  I vaguely remember getting home.  Sleep, I learned, is definitely your friend with the flu.

$40 worth of Tamaflu at the ONLY pharmacy in town known to have it (the pharmacy at Cleveland Clinic) and that’s all I remember of Thursday.

Yesterday my rheumy called.  Turns out my blood work came out with an elevated white blood count (go figure) and I’m off my methotrexate until the Sunday a week after I start to feel human again (so… I’m guessing January).

I was instructed to NOT go to work until at least Monday so I can keep from infecting my co-workers. So I worked from home Friday.  It’s the holiday and my team is growing thinner and thinner and I need to be Johnny On The Spot through after New Years.  It’s going to be a long holiday season.

Yes.  I got my Flu Shot.  I got my flu shot before the doctors ever even thought of trying to get me to take my flu shot.  September, about 2 weeks after the flu shot signs started to appear at the local pharmacies I got my flu shot.

Funny… Rheumy told me what everyone else (well… all the medical kind of people anyway) has told me.  The flu shot doesn’t prevent the flu.  It makes the flu you get (if you get it) less horrible and helps prevent one or two or a handful of types of the flu.

According to the CDC the strain of the flu that is rampant right now isn’t actually included in the flu shot.  This year’s flu shot is primarily H1N1 and a couple strains of influenza B.

Please don’t be lulled into a false sense of security by the fact that you have gotten the flu shot.  If you feel sick, go be seen as soon as you start to feel awful.  Tamaflu doesn’t make you better but it makes you feel less crappy.  TAKE ALL THE PRECAUTIONS YOU CAN to avoid the flu germs especially for those of us that are immuno-suppressed.  If I wasn’t on MTX and Orencia would I have gotten the flu or gotten it as badly as I have it?  I don’t know.  It’s immaterial    I have it…

I know that hand sanitizer (handsitizer) isn’t all the answer and bleach wipes and Lysol isn’t all the answer and that I’m going to go a little nutsy over trying to make sure I don’t get it again and I don’t get another strain this season because I’m going to use everything I can to prevent it.

This year, I drew the short straw.

Santa Hustle Cedar Point and Did Not Finish… coming to terms

568 So… today was the Cedar Point version of the Santa Hustle. I looked forward to this race for months. It is ON THE LAKE, how awesome is that. Okay, it isn’t quite the feeling of Disney, but hey, what is? I knew I was going to dress up for the race. I was determined to make it memorable.

It was memorable.

We got there 30 minutes before the race.  There was a HUGE line for the porta potties.  In retrospect, I should have been clued in, but hot off of the last race being the Disney half (almost a year ago now) I really didn’t think too much about it.

I should have.  I should have waited in the line and gone to the bathroom.  Turned out, the next porta potty I saw was between mile 4 and mile 5.  By then I was sick from having to so SO bad.  I puked twice and ended up finding my own place to go.  I’m not proud of that fact, but it is what it is.  NEXT year I will know better and plan better.

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It was neat. They split the starting herd in two for the half. The two sections were released about 3 minutes apart. It gave the elite a good head start and spread out the runners.

The first nearly three miles is in the park. It’s a neat experience being in the park when it is the off season. The rides are in various states of disassembly. Cars are off of the coasters. The train is shrink wrapped. The park is buttoned up for the winter. The only non-runners in the park are the photographers and the volunteers handing out M&Ms, cookies and water. I would not recommend M&Ms next year. Entirely too many of them ended up being left in the glasses all through the rest of the park

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I was very surprised to see that there weren’t many glovies or hats or any other clothes really littering the course. In Austin the first three miles had discarded clothes. People in Ohio realize the necessity of yummy warm clothes. I got three sets of arm warmers at the hustle store… they are amazing and I will wear them the rest of the whole winter to work.

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By the time I exited the park I had thrown up once, shed my turtle neck (that I left with bear when I found him at the gate taking pictures). It is not pretty to have to go that bad and not have ANYWHERE to go. I was on “my time” (I was keeping the pace that I usually find myself keeping) but I was very much not feeling the way I needed to be feeling to finish this race strong. I wasn’t feeling like I should to finish this race at all.

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I have to admit that I wasn’t thrilled when I saw bear taking this picture. This was probably my lowest. I called him from mile 6.25 in tears. I hit my wall. I was at the lowest I think I have ever been in a race. I was not feeling good. I was still holding my time. I was not quite last. I was keeping up with the people I was near. I passed a few. I was passed by more. I was not last. I was not in a good place. I realized at that point that I needed to not be stupid and hurt myself more just to finish. I realized I could cut SO many corners and cross the finish line and appear to have a personal best and get the bling. I realized that I could push on and try to finish (I was STILL… even after puking, going to the bathroom in a dumpster and falling completely apart… I was STILL right about on MY time). I realized that I didn’t need to do that.

Halves are my race.
I let myself down? Probably
Am I mortified by this race? Oh hell yeah
Am I going to do race again? DAMN Straight. I’m going to sign up (soon) for the Cleveland Towpath Half in April… or maybe the Cleveland half marathon. I will sign up with squirrel girl so she can ‘race’ with me (and I can watch her disappear into the distance with pride).
It was too soon after surgery. I wasn’t ready

DFL (Dead Freaking Last) is better than DNF (Did Not Finish)… except that sometimes it is better to listen to your body when it starts to shut down on you and suck it up. Sometimes Did Not Finish is what needs to be.

Santa Hustle… Cedar Point… T – 26 hours and counting

Okay… so today we drive up to packet pick-up.  I’m hoping for long socks and arm warmers; I’m REALLY hoping for arm warmers (they are really neat).  They have a store, go figure.

Last night I finally tried on the pants I’m wearing to race.  They fit perfectly.  I’m going to hunt up my tights for under them because 40 isn’t warm and they aren’t probably heavy enough for me to be overly happy even racing.  But they fit and they are cute.  I get my dry fit stuff in my packet today, so I will see what other cute crap I can wear with them.

My fanny pack is almost packed.  I have to toss in my iPod and my phone and my camera and I’m good.  I have my glovies (electronic compatible ones, naturally) and hand warmers and my own candy canes.  Not that I’m terrified of having to face the same lessons that I learned at Run For The Water last year, but… yeah.  I pray I don’t have to worry about watching them empty the last two water stations all over the ground as I approach.  I hope I get a cookie or two.  I hope I get a candy cane… or two.  I hope I’m not swept.  Even DFL beats DNF.  I really really want to finish.

I’m mortified to announce that I actually did start taking my prednisone.  Yesterday I took 3 because for two days my left wrist (NOT my problem child) was KILLING me.  Right around the Carpal Tunnel place it burned and ached and was horrible.  My middle three fingers started to stiffen and ache and I knew it was going to get very not pretty very fast.  I hate taking them.  I refuse to take them if I have any other options.  With the race tomorrow and so much I still have to get done to get ready for Christmas and my project kicking back into high gear… I probably didn’t think as long as I might have done otherwise.  But… my Rheumy did give me a script back in the spring when my finger (same hand oddly enough) went totally bat shit crazy on me and gave me a refill.  I kept it because I’m scared and it’s a good thing to have on hand.  So… I am treating myself and will catch up with my rheumy on Wednesday.

So here I am, up and at em, ready to go to packet pickup.  I’m HOPING to spend a few minutes along the lake today taking pictures and enjoying the cold.  Eh a girl can dream, can’t she?

Fighting To Retain the Christmas Spirt

***** Warning… rant in progress… *** Don’t say I didn’t warn you.

I love Christmas.  I love winter… almost as much as I love fall.  And here I am… sitting at my window, trying very hard to retain the Christmas spirit.

This morning my fingers are not happy.  I’ve used my Tiger Balm and my Voltaren gel, and they are still not happy.  I’m going to have to resort to Napproxin shortly.  This is not a huge big deal.  THAT at least is something I have come to expect at random times.

I’ve been sitting here absolutely depressed, however, over my work schedule for the rest of the year.  I’m not supposed to be on call at all this weekend.  AT ALL.  Yesterday I got a rather testy phone call asking me why I wasn’t on line because it was go live (WHO knew) for a project that I wasn’t aware I was even still responsible for.  4 hours working on THAT project on my day off (another hour or so today… yay me) PLUS I got another rather not happy call from MY project team asking me if I could log on and work for an hour or so because the person who WAS on call was TWO HOURS away from his computer.

It’s not bad when I expect it.  It’s not nearly as bad when I can plan around it.  Finding out that my daughter is liable to get fired for being late because no one bothered to tell me that I had to work on my weekend off… really?  Thanks guys… Uber Specialness.

Starting on the 18th (The ENTIRE holiday, ironically starting the SECOND I am allowed to carry more than 10 pounds) I’m on call for all but three days through the end of the year.  I’ve already been warned it’s going to be very busy and there are going to be a lot of things that have to be done. Merry Christmas.  Yay me.  Christmas eve and Christmas day, New Years Eve and New Years day, the entire weekend for two consecutive weekends.  There are going to be two of us NOT on vacation on the Friday after Christmas.  Because when people committed to what they were going to take (back in September) as vacation… they forgot what they said.

Good thing we got the Christmas lights out of the way over Thanksgiving.  I’m trying so hard to keep looking forward to the rest of the Christmas season.  I’m NOT working next Sunday.  I don’t care if someone has to drag my cold dead body across the finish line at the Santa Hustle… I’m holding on to at least that remnant of my holiday.

I’m trying… I really am…

I’m not sure if it is the full moon making it worse, or just realizing that commitments don’t mean shit to people when there are good times to be had… but whatever it is, I have to find a way to shake off the tears and get the holiday spirit back.

In The Silence There is Peace

Puppy doodle and I are sitting in the living room.  The Christmas tree is on.  The only sounds are the ticking of the cuckoo cuckoo clock and the rain (and occasionally the furnace kicking on to chase the chill).  It’s a beautifully peaceful morning to be writing and just being.

It’s not like this very often.  It’s like this even less often the last week or so.  It’s something I’m treasuring this morning.

It’s been raining all night.  Not a hard rain… just… rain.  The sound of it on the roof could easily put me to sleep.   I keep looking at the fireplace thinking that it would be really nice to start a fire and just be here in this place all day… But the coffee is thirty feet away in the kitchen and it keeps calling my name.  If I get up, Peanut will insist that there be food, and she’s so peacefully asleep…

Today I’m going to mix up a couple of batches of egg muffins.  I tried a batch yesterday and they were a pretty big hit.  6 eggs, a few tablespoon fulls of milk and a greased muffin tin are all you really need.  You can add in all of you favorite breakfast things or omelette things.  Yesterday was just cheese.  Today, I have some sausage I’m going to brown up, maybe some bacon, cheese and red and green peppers…

Heat oven to 400 F
Grease the muffin pan
Scramble the eggs and milk together (add salt and pepper if you want)
put “stuff” in the muffin tins… the sausage and/or extras
pour the egg mixture over the stuff
pop it in the oven for about 20 minutes (until the eggs poof up and look a little brown and are “set”)
take them out and run a knife around each muffin
let them sit a couple minutes
out they come.

6 eggs make about 6 muffins… so… one egg per muffin tin hole roughly… do the math… not bad

I ate mine yesterday with salsa and they were really yummy.  I hear tell that they keep well in the fridge and microwave up toasty warm in just a few seconds for breakfasts all week.  I have my doubts they will make it that long… but hey… a girl can dream.

I figure I might as well take advantage of the way I’m feeling today to get some crap accomplished!

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OH… I’ve also taken up knooking.  Knitting with a crochet hook that has a big long string attached to its butt.  I’ve never been able to get my head around knitting.  I’ve tried SO many times over the years and gotten frustrated.  I love the way knitted projects look… the way the weave looks… but trying to get a project accomplished was horrible for me.  And trying to even get the needles to do what they were supposed to do the last few years has just been literally too painful for me to even make the effort. Crochet seems to just have different motions and that doesn’t irritate nearly as badly.

I saw these “hooks” (they look just like a crochet hook) at my local yarn store and thought I would try.  It was $6 for three hooks… I’m not out too terribly much if I can’t do it or I hate it… eh… why not.  So I’m learning… and I’m really liking it.  I made a small square to just see how I liked it and it’s pretty neat.  Now I’m working on a hat… one of those LONG stocking caps from forever ago (the ones like in pictures of the 50s) and it’s working and I’m enjoying it.  I even figured out how to bind off and add stitches without it looking ratty!  I work with a hook about five minutes out of an hour at work, when my hands start to get a little achey from typing.  The rheumy said to change what I do to keep things from aching too much.  It’s working.

The gallbladder surgery makes me feel almost human again.  There have been a few really not great days when I know I’ve lifted more than I’m supposed to and I ache in a not fabulous way, and I know I have to give my body time to heal better… but I’m feeling so much better.  I’m glad I got it done and I wish I could have had it done in October when it really started to bother me badly.

AND… I’m a week away (a week tomorrow) from the Santa Hustle in Cedar Point.  I’m hoping I can make it under the cutoff time.  If anything is going to stop me it’s going to be the remnants of my surgery.  I’m really looking forward to ‘running’ across the causeway and getting some pictures of the lake.  Last night I bought a pair of candy can stripe legging (and a pair of snowflake ones in case the candy cane ones don’t quite fit right)  and a Christmas lights shirt to wear for the race.  With the dry fit Santa jacket that comes with packet pick up and the 40 F degree day, I’m thinking it is going to be a really nice day to race.

Have a marvelous weekend everyone.  Enjoy your world.

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Thanksgiving

Black Friday morning creeps across the sky. Sitting here watching the daylight sneak in to the back yard. We got a couple inches of snow last night. DS is feeling disgusted because the snow only is lasting a day or … Continue reading

3 weeks to race day

The Santa Hustle is just three weeks away. I am way not as prepared for it as I should be.  My work project and my gall bladder issues kind of all got in the way of really really training.  But I am really pretty psyched about the race.  It’s way cool to have the course going through Cedar Point.  It’s even cooler in my humble opinion to have it be across the causeway and to ‘run’ beside the lake.

I’m weird, I know.

I’m kind of a lot bummed because I’m probably going to be going all alone.  Like when I started halves in Austin.  Up at o-dark-thirty… drive my own butt to Sandusky and make sure I’m there before 6:30 because I know I won’t be going to packet pick up on Saturday (duh) and they already warn you of the long lines.

Starting line… alone… but I will have my music all ready…

I have to maintain about a 15 minute mile…

There are not very many water/aid stations along the way… Only six.  There are usually stations every mile… That one worries me just a little.  BUT there are also cookie stations and candy stations… so… I’m thinking that will probably help.

The causeway is supposed to be windy.  I need to be sure I have enough batteries for my weather proof camera… and my ear muffies are on sufficiently tight…

I hope I cross in time… before the 12:30 close.  I already can envision being incredibly demoralized by about mile 8.  It’s not Disney… and I know I will be heading to a lonely finish line.  I’m worried that my head will be worse at this one than it was at my last Austin one.  At least at that one everyone was there and I knew I would find them somewhere even if I had to do it all alone.  (turned out that I didn’t have to do it all alone… DS was there to walk me in and cheer me on again)…

I’m a little worried.
I’m a lot worried about the drive home. I don’t know what the weather will be.  I don’t know how I will feel (I could be incredibly fine like I was for Disney… I could be incredibly horrible like I was for my first… and my last… Austin races).  I will have to be sure I start a week long series of prednisone about mid week that week… just to be on the safe side.

I’m excited… I’m nervous… I’m back to doing something I really enjoy a lot… I wish I were dreading it less than I am.

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Bitching and Whining

It’s warmer this morning, here.  Which means the snow is melting as we speak.  I guess I’m supposed to be happy about that, but somehow I’m not.  I’ve always liked winter.  I don’t like it less now.  I tell people … Continue reading

Reality Bytes

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My second week post-op work from home is quickly coming to an end. Tuesday I saw my surgeon and he released me to go back to work on Monday. By Christmas I will be allowed to lift more than 10 pounds. I have a 22 pound turkey to make for Thanksgiving. This may be interesting.

I’m nearly to the end of my Red and Green and White paper chain scarf. It’s long enough to wear, but I would like another three or four links before it’s long enough for me to really like it. I wore it to my infusion yesterday and I got compliments on it! In my head, they were just being polite, but I accepted them. They made me smile.

When I was going to the infusion center on main campus, it was located right outside the Rheumatology department. I don’t know if that was by design or accidentally. But that’s where it was. It was just there. Safe. Kind of sterile to look at. Technologically awesome. Great people. But it was by the Rheumy’s office.

It’s easy to kid yourself about the infusion center when it’s where you can connect it to your illusions. The curtains create individual little rooms where you can hide with your infusion, enjoy some juice and crackers with the poison of your (your doctor’s) choice. Very illusion inducing. You’re just there and while there are people also there, they are just there too.

Yesterday, going to my new infusion center, my reality caught up to me.

The man next to me was having issues with his chemotherapy and was trying to decide if it was time to have a port put in to make his infusions easier to deal with. Fewer pokes and sticks. His wife was busy looking up the alternatives (gotta love smart phones), which ports would be most effective and most comfortable for him.

The woman in the chair on the other side of me was getting her poison with blood. She had a lot of trouble with her IV and they had to call in one of the surgical nurses to run hers. Hers was very painful. I tried to distract her while they were getting her set up. Her partner took their little girls for a walk so they didn’t have to watch. She is tied to her chair for two hours ever three months.

The woman with the awesome piercings across the room was there for about the same amount of time as me. She was neat. I hope she’s there again. I would like to get to know her.

On the counter under the TV there was a pile of neck pillows that someone had home-made and dropped off. There is a box of Teddygrams and a box of soda crackers. There is a fridge full of juices and Gatorade and diet soda. There is a box full of hats and scarves that people have made and dropped off. Most were fleece. One hat was crocheted in the most interesting colors. It called to me from across the room. It became mine. The pattern makes the colors look like puzzle pieces.

Reality, yesterday some, more this morning, kind of snuck up on me and took my breath away. I KNOW all about the drugs I take. I know what they are for. I know what they do. I know that without them life gets to be really nasty for me.

I don’t feel so alone somehow having sat through everyone else’s reality.  I’m really glad I switched.  I feel, somehow, more like I’m part of some weird ass community.

Sometimes, though, realizing that I will be going there probably for the rest of my life to poison my body… that I will be taking my chemotherapy drugs forever… that I will be tricking my body into behaving nearly the way that normal people’s bodies behave… it all caught up to me. I can’t say that I have cancer, because for me it’s not cancer, but I have to let places know that I’m taking chemotherapy drugs because they are what they are.

The hat came home with me. It’s a little scratchy… the yarn is kind of stiff. I’m going to try fabric softener… It wanted to come home with me to remind me of my reality. This morning I’m enjoying coffee and I’m thinking I might take a break from my computer to go take a long hot bath.

I am glad that I’m not yet to the point where I scare people with the way my hands look. I’m glad that I ‘only’ hurt as much as I hurt. Mostly I’m glad that I learned that I need to treasure every second because you never know when it will be your last.

New Infusion Center

20141119_145919Okay… so… I’ve finally bitten the bullet and switched my Rheumy to the one local my house rather than on main campus Cleveland Clinic.  My primary excuse for moving my location is the tremendous waste of time.

I had to walk from work 15 minutes to the parking lot, drive 20 or so minutes to the parking garage and get to the 5th floor of building A.  $6 later, it was either head back to work for an hour or head home and work from home.  There was a whole lot of waste considering it is every freaking month.

So I made the switch.  Now I go to the clinic location 1.5 miles from my front door.  It’s stone throwing distance from the mall.  Parking is free and walking is quicker than the rigamarole I was dealing with at the other location.  THOSE were the benefits I was aware of before.

Today, I got my first infusion at the new location.  The infusion center at main campus is shiny and new.  The chairs are brand new recliners complete with personal TVs.  Each chair has its own little room (curtains).  It’s very sterile and impersonal.  HIPPA would be very happy.

And here I am.  I’m in a hospital recliner.  One TV across the room.  Seven chairs side by side.  People in each chair.  Everyone hooked up to their own personal flavor of poison.  Everyone pretty much in the same boat.

Everyone else (all but the neat skinny lady in the far corner and I) have their company with them.  To my left the woman’s partner and their kids.  To my right, a man with a blue vomit bag being held by his wife.

I have Gatoraid and Teddygrams.
I have a toasty warm blanket and a pillow.
I have Wifi and my tablet and my Orencia.

I did it for a bunch of practical reasons.
I’m glad I did it because maybe glitzy and sterile aren’t all they are cut out to be.