Asking for Help is Hard!!!

16 Oct

Oh October, Breast Cancer Awareness Month…a celebration of sisterhood, survivorship, inspirational stories, therapy advancements and remembrance.  The pink has almost become happy..races, beauty shows at Saks, fundraising, team shirts.  Don’t get me wrong, these are such essential components of breast cancer awareness.  I’ve just really never been in the situation to have to worry about the “what if treatment doesn’t work” side of it all.  I’ve always bounced back…and this time it’s taking so long. 

 Two months ago my system was so beat down from radiation and chemo…my blood counts weren’t horrible but I came into contact with a horrible bacterial infection that ended up knocking me down for nearly 3 weeks in a hospital bed where I was pretty much unconscious. ..not a coma but definitely not coherent.  I when I woke up I couln” reall move anything on my own…one seond 39, vibrant, taking 3 mile walks and yoga the week before and sudden change. 

So they transferred me to St. David’s Rehab Hospital to really start healing…again when I got there I couldn’t do too much.  What I found there is unfortunately this happens to so many unsuspecting people whether through cancer, surgery, injury, stroke…your life can be uprooted at anytime…no matter your health or how much kale you eat.  Those habits can definitely help you through but I doubt they are the end all be all or I wouldn’t be writing this. 

So after nearly 4 week of therapy I can walk with a walker, I can type, feed myself, hold normal conversations, walk a little on my own, move around in a manual wheelchair, maneuver around by house a little to make simple meals and get used to getting around the house between walker and chair.  I can’t be left alone at this point so I don’t fall and make this worse…my strength needs to continue to build.  I’m doing mini crunches, lifting light weights, working on core strenght…but it’s not like just going to a trainer and bulking up…three wees of laying in a hospital in critical condition part of the time really made things a challenge.  Somehow I made it through, with the love of my God, my family, and friends…I am so truly thankful and although my recovery is still taking time…it’s happening.  I continue with outpatient therapy starting Tuesday.

My mother has been here for nearly two months.  She refused to go until I’m home…so now I’m here.  She will continue to be here to get me situated through the end of the month…I couldn’t have done this without her by any means… she’s been by my side the whole time.  Johnny has been amazing with coming to the hospital, working, keeping up with Kat, closing on the house…I don’t know how he does it.  My sister Heidi flew in to help for a week with the move and unpacking, my mother-in-law has helped with rides, sister-in-law and a friend providing delicious meal for the family here and there.  Yet the call for help doesn’t cease at this point.

So now help is going to start backing off from the family so since I’m home I’ m starting so seek out friend, family, church and community help.  In the next few days there will be a Care Calendar sent out to a lot of people to sign up to help in different ways.  I haven’t had a chance to really think about it in the hospital because I had no idea what to expect at home.  Now I’m getting some idea.  The biggest thing is going to be just people coming over in shifts, like 2-4 hours initially until I’m comfortable being more independent.  It’s such a hard thing to ask for help since I’m used to being in control. 

My inspiration for the day is I am improving a little each day and knowing I have more than 25 people I can email for help and the word can be spread! 

My indulgence…using my own shower rather than the hospital set up…liberation!

September Never Happened

1 Oct

So I’ve been away for awhile…really been away.  About a month ago my system was really beat down and unfortunately I ended up in the hospital with CDIF…nearly killed me no lie.  My Mom has been at my side being my advocate, helping to take care of this big mess and trying to instill some form of normalcy on the Meador family.  I am now at rehabilitation hospital where I woke up and didn’t know my SSN, my address, really anything…so it’s starting to come back…pretty quickly now.  Oh, I really couldn’t type  two weeks ago, so major improvement.  My days are filled with physical, speech, occupational and music therapy and improvements are definitely being seen by all around be…subtle but there.  Since I was  in a hospital bed sicker than anything for nearly three weeks one could imagine by muscle tone is gone.  I’m rebuilding it all but am full of hope.  Anyway, we could use all the prayers and positive thinking in the world right now.  Simply jumping into Barton Springs or trying to continue normalcy didn’t work so easily this time.  I’m fighting like I never have before!  Pink continues to be pretty darn stinky.

Going to Take that Icy Plunge into Barton Springs

6 Aug

Cancer, C, the Bog C, carcinoma, corruption, malignant growth, sickness tumors canker, long-term illneess….thesarus entriesl.  Horrible words to think about one by one.  Thank goodness I have found more productive words in cancer treatment…hopre, options, care team, infusion staff, chemotherapy, radiation therapy, cyber knife surgery, healing, chance, life and even love…my care team tells me often that they “love me” and you know it is love when it comes down to it =…the compassion and genuine concern for preserving life.  Not once have they use the words “long-term illness” or “sickness” to describe what’s happening to my body but say “You are young and healthy so you”ll respond better”.  They tell e they are “right behind me” which I truly believe with the personal concern and friendship that has developed over the past 7 years.  We don’t talk about death rather life and continually approach this whole thing as a chronic condition it gives me hope that I’ll just have to hang with my tem for several years for several treatments.  Not that I am thrilled to be a regualar…I know the people and the treatments are waiting for me.  And if Dr. Tokaz thinks he’s going to retire  he is flat out incorrect.  So enough about treatment…but it’s a big part of my life.

Once cancer attempts to invade your body (I won’t say touched because that’s soft and gentle and cancer is anything but}, life never completely resumes normalcy. A sudden ear infection or headache could be pressure in the brain.  A lasting stomach problem may end up a gastrointestinal disease. the pain in you hip might not be just aging, sudden vision problems aren’t simply prescription errors.  When you find yourself in a brain MRI the seriousness and instability of cancer is very c;ear…everything done right may not go as planned…there may be spots in the CPU, everyone’s dreaded outcome.  My liver, lung and bones are truly important but the brain…,my brain is me.  It’s the absolute most amazing body part,,,brains make each and everyone of us different..they are crammed with data, dreams, and secrets.  The Brain is Life,  The rest of us is just attached to it flopping out below.

Treatment changes, and we are getting ready to add a few things to our formula…two weeks  of daily radiation….there goes my kickass Pixie dop…it keeps coming and going,  Radiation will wrap up by the first week of school and my doc says I should continue to work..he know me. it will drive me mad to not be there.  At work I’m a teacher with high expectations and am held to those.  I take my second graders and all their love and humor personally and they are the central force of life each day from 7 to 3 and then some.  SO when I’m with them I’m just Mrs. Meador, their favorite teacher for the year and they are the Meador Rock Stars, my favorite class for the year and together we are about having good times….that’s life and my treatment is about life.

I was told to stay out of the water this summer.  I’m jumping into the cold, crisp water of Barton Springs today and no one stopping me.  I can’t take the sidelines with this anymore…so the yearly plunge awaits and it’s ging to be COLD.  I always say how much I love the heart stopping cold..this year it actually may stop my heart too, but I’m taking that chance.  THe Sandy’s twist cones after that…I’ll detox next week…the green juice awaits,

My inspiration today is Johnny…not only a husband but the best friend I could ever wish to have.  Sometimes he just holds my hands forever and doesn’t say anything  which is gold because in those loss of words silence is what we need.  I know what he’s saying by just squeezing my hand and kissing my cheek.  He’s always there for me…never let me down for these things, and when he’s not sure he calls my mom for advice which I love…that’s a true man.  He asked me “I know you have a lot going on, but do I still get to go out for dove season?”,  Of course he does…more so now than ever.

My indulgence for the day was ended the boycott at Subway and enjoying a delicios veggie with guac on flatbread.  Ran into some awesome people there today, Lisa’s grandfather who was so sweet to be involved with school this year,  and Jena Krkland…mu absolute favorite Buda gal…I don’t see to much of her with our kids going every direction.  I love kind of small  town Texas…a;waus  running into good folks.

God sends us signs and symptoms so if we are paying attention, we’ll take it seriously to our doctor.  This is one on of the ways God begins to help us heal,  Often symptoms disappear after the concern is confirmed,,,just like he gave you enough to get you attention and get to the right place.  He works in not so obvious ways so stay alert and listen..He’s all around us.

Well, I better try to go back to sleep so I can jump in those Springs!!!!

39 Candles

19 Jul

The birthday came and I’m not going to say it went…birthdays should never go.  Birthdays should really be remembered each day until the next one; it’s really a miracle any of us are here really.  That saying that we are all hanging here by a thread certainly has some truth in it.  Think about  it, we are the only habitable planet in a galaxy of nine orbiting around a dying sun, suspended in space, totally reliable on the perfect conditions for existence…that alone  is huge without all of the muck that’s actually going on down here on planet Earth.  So birthdays are pretty darn miraculous and I will grateful for every wrinkle and gray hair that hopefully lines my future.

We kept it low-key today as planned…started the day on Facebook reading sweet birthday wishes which I love!  Slowly got it together over some hot tea and a yogurt parfait.  Finally got Kat out of bed and functioning and before you know it we were out the door for the next seven hours.  I of course had to start the day at the butt nurse (that’s how I refer to the wound center I have to visit each morning), then onto the Blanton for some pretty incredible art.  They have an extensive modern/contemporary collection which is my preference.  I could stare at art for hours…the emotion and psyche of the work is so captivating.  Often what I think the artist is portraying is pretty close, but there are times where I am completely off and amazed when I learn the motivation behind the work.  I saw a lot of social and political dismay today, but also a lot of love and beauty wrapped in there too.   Kat’s grown up nicely…she appreciated the art museum and didn’t ask when we were leaving until nearly an hour into it.  We ended up spending two hours at the museum, but we didn’t make it through the collection….really spent time reading and thinking at some points.  Who knows, the promise of the gift shop at the end could have been her motivation.  We both picked earrings made out of colored paper; Kat chose green bats and I chose orange cats.

Lunch was divine at Kerbey lane…the best vegan queso I ever tasted, tomato pie, salad with cilantro lime and a lovely vegan vanilla cupcake.  I ordered when I was really hungry so I have leftovers for lunch tomorrow.  If Johnny could have joined us it would have been perfect.  I feel so guilty in the summer running around Austin while he’s toiling away with some robot (I really don’t understand what he does aside that he looks like he’s in a space suit when he’s working in the clean room).  I’ll be back to working hard for my money soon enough though!  Anyway, I thought a cupcake more suitable since 39 candles are awfully big for any cake and would melt a ton of wax on the icing.

Kat skated today too…I know it’s my birthday, but one of my biggest accomplishments is Kat and watching her shine renews me.  When she’s happy and strong that’s how I feel.  She amazes me.  What’s really amazing is that she can blow off skating like she has this summer then after an hour or so impress the heck out of me…thus she learns nothing from not dedicating long-term effort into the cause.   Skating is not really her true calling anyway…not with her voice…that’s where her natural talent is and I’m not just saying this.  The girl can sing.

Drove by the house today…it has a frame.  The interior was complete and the guys were working on the exterior walls.  I gulped when I saw this…I fear finishing before the closing day.  I was hoping for a late closing but there is never an excuse for the builder not to work since it never rains.  Starting to get really excited that this may actually become a reality.  But that stupid little part of me wonders how much time I really have to enjoy the new house.  Johnny says years and years.  I love Johnny.

Well, doctor world awaits bright and early….of course.  Butt nurse at 8:30, oncologist at 9:45 followed by bone infusion for two hours.  If only I was on a payroll for this mess.  What they put me through, I’m the one who should be getting a co-pay each time for crying out loud!  Anyway, I need some positive thoughts and prayers for good CEA and CA27-29 numbers… those are tumor markers.  Lower numbers mean Xeloda is working…that’s the plan.  I handled chemo well this 14 day round, on a break for a week, but ready to increase my dose if that’s the consensus.

Tons of inspiration in mother/daughter time.  Today felt like old times…where we pack in as much as we can into a summer day.  I pray for many more of these Mom and Kat days…she’s my sidekick.  She seemed to have enjoyed it too…AND she let me pick my radio station since it was my birthday.  I also meditated in the backyard tonight…haven’t done that for a while and needed to connect to myself and God that way.

I indulged today…Kerbey Lane!  Enough said!

“Last week the candle factory burned down.  Everyone just stood around and sang happy birthday”. -Stephen Wright

No Swimming Allowed…Time to Buy a Fridge

18 Jul

I came to the conclusion today that in my old age of nearly 39 that I don’t honestly divulge what’s going on with me to hurt anyone’s feelings…I open up my emotions in order to cleanse my soul so I can continue living.  How in the world can anyone be expected to hold it all in under a fake, elated, crazy clown smile?  I will keep singing and dancing in between the hard times, but man oh man does it feel good once in a while to just unload a bunch of crap.

Kat went to the orthodontist today for a consultation…not because I wanted her to but she wanted to.  She has a slight over-bite and it bothers her more than anyone else and wanted to see the options.  Well, the ortho totally got my vote with the Ms. Pac-Man machine in the lobby…and it’s FREE!  Hell yes!  I think we may need to go this place a lot more…a selection of hot teas and an awesome original 80′s game???  Woot!  Anyway, she can get Invisalign stuff…it’s a clear molding that goes over the teeth and takes about a year and a half to close gaps and tighten up the teeth…no wires!  Still expensive as heck and now we’ve just gotta figure out how to pay for this gorgeous smile.  Wish I could put a tip jar in my classroom! (There’s actually a code in educator ethics where this just isn’t cool to do).

So tomorrow is the birthday…looking like a normal Tuesday at this point and normal beats a lot of other things…like for instance, abnormal.  Abnormal flat-out sucks.  Kat and I are planning to go the Blanton Art Museum on UT campus (my dear old school) then onto Kerbey Lane for lunch (the original one).  Maybe a stop for skating in the pm…not me, but her.  I can’t skate right now thanks to an ingrown toenail removal.  We go to the beach on Thursday so that will be the real celebration…although the doctor denied my access to the pool.  His exact words were “the flesh-eating virus initially spread in a swimming pool”.  Yikes!  So the ocean is out too.  I’ll keep my feet and calves happy…but I will tell you that living in Texas in the heat of the summer and being banned from swimming because of a butt abscess wound really, really, really is pitiful.  I think when we get back I’ll try to get some friends together for a low-key birthday dinner…everyone is all over the place right now.

So today is the LAST dose of Xeloda for this cycle…no chemo for a week, although I have Aredia (bone treatment) on Wednesday.  This medication/doctor schedule is a pain, and like I need another pain in the butt.  I can’t make it a week without going to someone’s doctor.  If it’s not mine it’s Kat’s annual stuff or my cats’ annual stuff.  I wonder if I just worked in an oncology office it would be easier with getting labs drawn and scheduling treatment..hey, that may be a good idea.

School is closing in…updated my website, made some generic schedules.  Kat said that she doesn’t want to go to Houston the week I go back to work and she will help me in my classroom!  Sweetness if she stands by her offer.  The kid is 12 and can actually accomplish all kinds of stuff…copies, printouts, labels…she may end up being a gold mine for the second grade teachers.  I offered to pay her $10 a day, her selective hearing heard $50 which made me choke on a piece of fusilli.  She’s willing to take $10 a day…thank goodness!

It’s off to Bunco tongiht….70s night.  I’m dressing like a hippie and cool thing…I could pick stuff out of my OWN wardrobe and have a selection of Birkenstocks to choose from…PEACE!  So I have a bold tie-dye, some horrible gray flared pants, a peace sign scarf and jewelry, wedge shoes and a bandana.  Funny, I won’t look too weird around here…gotta love Austin.  It will be good to see some friends I haven’t seen for a while.

I was actually inspired today by a beautiful, black, side-by-side, Kenmore refrigerator at the Sears Appliance Center…dreaming about stuff for the new house and that has to be the first purchase.  It was gorgeous…with track lighting even (like is that necessary???).  I actually told the sales rep that I needed one that makes Sonic ice…he seemed to understand.  I know, not a normal requirement but who the hell said I was normal?

Indulgence, baked fusilli with summer veggies.  I found a WONDERFUL recipe in Cooking Light at the orthodontist’s office (no I didn’t steal the magazine, I checked on-line when I got home).  It turned out delicious and filling.

Here’s something I read in Revelations I like… “Blessed they that do His commandments, that they may have right to the tree of life, and may enter in through the gates into the city. “

The Truth of it All

16 Jul

Forewarning, the intent of this post isn’t to depress or bring anyone down…however there has been a lot on my mind that needs to be said and if people are willing to listen, well I’m just going to bring it out.  This summer has sucked…literally, and I don’t want anyone to tell me, “well it could be worse”, because I already know that,  But my summer has been far more crappy than most so although it could be worse it still just flat-out sucks.  So June started with a 16 day hospitalization followed by at least a three-week recovery period which consisted of low energy, irregular bowel movements, moderate pain, headaches, nausea and bouts of tears.  Just when things are getting a little brighter, it’s time to go back on chemo which no matter how many positive thoughts and prayers I can surround my body with…it still seems to be chemo filled with unpredictability.  And now for the past few days I have felt really good by the afternoon but my days start out really low where I’m not ready to function for at least an hour after I wake up due to lingering gastrointestinal problems left from viral colitis and most likely Xeloda side effects.  I have not swam, traveled, stayed out late aside from miniature golf and “Hairspray”, ate drippy ice cream cones, freckled my skin, or have been attacked by mosquitoes…the normal summer events.  Why?  Because I have to continuously be careful and out of direct sunlight and although I’m excercising again it’s not nearly a fraction of what I could do and I can’t even go try classes at the Y anymore because I’m afraid to show my face after my collapse AND I just don’t think I can keep up with the intensity of hour-long cardio work-outs…and when I can’t keep up I feel like a failure regardless that I know I’m STILL able to do more physically than lots of people with nothing wrong with them.  I know, PITY PARTY…but I’m throwing it now and it’s going to be quite the party.

So my birthday is coming up on Tuesday which doesn’t help.  Climbing Mount Everest this past year would have been easier than making it here.  And there doesn’t seem to be anything sparkly or exciting for getting here.  It’s a Tuesday, so many people are  either working or out-of-town, and it’s turning into an anticipated “just another day”.  Then I think about the big deals people make about turning 30, 40, 50 and so on which is an accomplishment, but turning another year older fighting Stage 4 cancer is a flipping miracle at this point.  I want to turn 40, 50 and so on so bad and doing everything in my power to do so..I just think as I approach year 39 if it will truly be my last…and tears pool to the back of my eyes and my throat feels lumpy.  This isn’t how life is supposed to be…there’s hope still there but fear is a pretty strong emotion and it’s stupid to completely ignore it because it’s going to be there for everyone at some point.

Kat and I in the meantime have lived a fairly normal week of summer…the first one in about nine weeks.  We hung with friends, went bowling, saw some movies, slept late, squeezed in yearly check ups with the pediatrician and such, stopped for sweet treats at Central Market a couple of times just because, and packed in a little extra driving around with volleyball camp.  It’s too hot to swim thanks to the scorching sun which seems weird..but I’m kind of relieved since I can’t get into the pool anyone thanks to the lingering butt wound from that stinking abscess.  Kat actually asked to leave the pool 35 minutes after arrival the last time we went..totally fine seeing that it probably was 95 in the shade.  Anyway, these moments of normalcy keep me going and pump me with hope through this funk.  We cancelled our Illinois trip this summer which I’m still coming to terms with…but travel just seems like a bad idea after an extended hospital stay.  Next week we are squeezing in Port Aransas and I can’t wait to get to the ocean, however it will be greatly modified this time around.

I know, I know…what a whiny complainer I’ve become but I’ve got a lot to whine about which is why I haven’t blogged lately.  Lots of folks read this for inspiration and what have you, so I filter quite a bit of what I REALLY want to say…but I can’t do that anymore and I need to spill my thoughts and hopefully have people listen somewhere.  I hate laying this on friends and I figure that the people who really are taking the time to read this spiel are interested in both the good and the not so good…of course my friends are too but I hate being the buzz kill at every gathering.  Honestly, I met up with some folks recently and in an hour I was not asked how I’m doing or feeling because the answer may not be something standard….and I didn’t offer how I’m doing either.  Then I’m left still needing to get this out to others…shit, I can’t possibly keep stage 4 cancer bottled up because it might make people sad…it makes me INCREDIBLY sad when I hold it in so it’s coming out, baby!

You know, things will be going just peachy..a trip to Target on a Saturday morning…totally normal thing to do.  Then somewhere in my brain normalcy is questioned and I suddenly think “How in the hell did this happen to me?”.  The next thing you know I’m bawling my eyes out unloading at least $65 worth of stuff I really didn’t need to buy along with the necessities and feeling about two feet tall.  I don’t know how this happens to anyone really…a young friend of mine was just diagnosed with lymphoma for the second time..he’s 19 and hasn’t had a chance to do crap to his body.  There continues to be no rhyme or reason and there continues be heavy smokers celebrate their 80th birthday without lung cancer while healthy, low risk people are lighting up on CT scans!

I still continue to meditate, pray, accentuate the positive…but I can’t be expected to always be that way.  I don’t think anyone expects that from me but at the same time most people freeze when this kind of stuff comes their way…life or death issues are a little more complicated.

I’m sitting here wondering what the point of this post is…and I guess the point is to stop feeling so alone in this whole crazy situation and start feeling like a normal, overworked, underpaid 39-year-old.  But I can’t do it on my own…I want people to know where I’m coming from.

Well, Kat’s awake and we have some normal Saturday stuff to attempt.  I don’t know what she is going to do when school starts and she has to wake up and stay on a schedule.  We have no plans aside from making plans.  We’ll see what the air conditioned world has to offer Central Texas mother/daughter duos today.

Last Day of June & an Interview

30 Jun

KXAN Interview

Since there is only one post for the entire month of June I have no choice but to finish this month out by adding one more…one lonely post is just too sad to leave there unattended.

When I got back from my summer vacation to South Austin Hospital, I was determined to catch up on three weeks of stuff…bills, sorting, filing, etc… so I spent a few days concentrating on that this week since I felt better and I am DONE!  Not that I am finished, but I am just done with it.  I wasted three weeks of my summer break on IV fluids and I’m not about to waste the rest of my break trying to catch up with things that will probably never be caught up.  So yesterday I made plans with my dear friend Dita, we headed over about 1:00 pm, talked, laughed, ate, drank a little wine, played silly card games with the kids and just didn’t accomplish anything outside of friends catching up which really was accomplishing more than anything else I have spent time with since my release aside from being with my family again.  Anyway, yesterday was one of the best days of Summer 2011 thus far and I’m ready to have tons of more days spent in this manner!

Yesterday was also eventful in several ways.  The drug Avastin which I took for about a year was revoked by the FDA for treatment in breast cancer…something I have feared for months.  Their argument is the side effects don’t outweigh the benefits which is a bunch of crap…dying of cancer is the worst thing I can think of and risking possible side effects to avoid that is worth it. Avastin remains approved for treatment of other forms of cancer at this point, but not breast cancer which makes the FDAs side effect argument totally invalid…a brain cancer or colon cancer patient is experiencing the same side effects.  The problem is that breast cancer is the popular one and I’m sure it’s costing insurance companies tens of thousand of dollars day after day…that seems to me more of a decision motivator than the so-called illusion of human concern by a government council.  Shouldn’t the choice just be left up to the patient anyway…it’s our life for crying out loud!!!

So, I was on the news to share my story of Avastin treatment.  I was on Austin’s KXAN last night at 10:00 and then again this morning.  The segment turned out really good and it was great that my Mom, Kat, Dita and David got to be a part of it…cancer treatment isn’t a solo act by any means so when my support is nearby it just means so much more.  The link to KXAN is on this post, so people should take time and view it, digest what is being shared, and maybe raise a little hell about it.

I’m off to work in my classroom today reluctantly.  Texas legislature and education is an entire separate battle which I’m not going to discuss right now because I want to keep my heart rate down!  Anyway, if I don’t get it done in the summer I’m so behind when we start.  I like to be MORE than ready on back to school night…that way I can act a little more cool when I meet my class instead of being a frantic psychopath who is teaching out of boxes!

My inspiration for the day is Summer…a time of flexible schedules and afternoons with friends and family…maybe a splash in the pool or just good conversation in the air conditioning.  Regardless, afternoons spent with the people I love are so much worthwhile than sorting through closets or bookshelves.

Indulgence…hazelnuts.  What a great yummy protein rich snack.  Although they are delicious covered in dark chocolate, raw and plain hazelnuts are a healthy bite to chomp on.

Follow

Get every new post delivered to your Inbox.