Tomorrow

Not going home, but having a pleurodesis. It is an invasive procedure where they, in lay terms, get the outer lining of the lung to adhere to the chest wall. Hopefukl, this will stop the pleural effusion, collection of liquid around my lung, and make it easier to breathe, talk, and sit. 

Apparently I'll have a drainage tube for awhile and be in some good amounts of pain. 

Thank you for supporting us continually. I'm not up for visitors, at all. The only people getting past my nurses have shared DNA, or put a ring on me, and there is a no exception rule. 

I am terrified, nervous, and just need to be. Thank you for respecting this need. 

My mom and sister Michelle will be here for a bit, yet not Pam. She is preparing for her 2-scoop celebration on 5/1 when she finally receives her post mastectomy reconstruction! 

Thank you for continually praying for my family.

Groundhog Day

Still here. On my 3rd room, and eating a bit. I can maintain yogurt, peanut butter, pudding, and water. May not sound big, but it is huge. 

Working on ridding some water, I have ankles of an elephant, and my toes look like cocktail weenies. Will also need another thoracentisis as my L side is loaded again, and my abdomen will get tapped too. I'm hoping to just get knocked out because I loathe the procedures and they freak me out. 

My anxiety is building over everything so I'm working on that as well. I HATE being sick, I HATE being Helpless.  

Was able to see my babies last night for just a bit. 5 nights/6 days is the longest I've ever gone I believe. I just wanted to touch them and sniff 'em, and squeeze 'em. Will have another opportunity today as well. Going to cruise outside with them hopefully. 

A lot of time spent thinking here. I miss everything. My family, my friends, I miss ability, and agility. Cancer is a horror that just does not stop at just being cancer. Retraining my stomach will most likely be a life long endeavor that will be very difficult and intrude on all aspects of life.  

Looking forward to many steps forward with no looking back. 

Hug those you love, hug those you like. Do not be afraid to say you are sorry, or to reach out to someone you thought you lost. 

Xo

Eating.

I should probably explain the I am not able to eat portion of my concern. I am unable to maintain anything I consume, excluding ice chips, small water sips, and sometimes clear juice that I have diluted 50% on my own. 

Each meal is the replica of the last:

6 oz ladle of broth

4 oz cold tea, unsweetened, 1/2 caf

4 oz juice

6 oz jello ( never eat)

That is it. All I have tried since Monday. While I've kept about 4 oz of beef broth, and my juice concoction, that is it. I'm not nauseated for most part, eat slower than thought possible, sit upright and remain that way.

 9.7/10 times?, I return on the investment. My system is clear of any blockages, but still not processing normally. Neurogenic response & motility and key things I need to increase and improve. 

My lung is still clear sounding from the Thora on Tuesday. No leads to any cardiac involvement, just cancer rearing it's ugly head. 

Speaking of cancer, I've not had treatment for a bit. Please direct prayers towarditmaintaining, receding, and as always complete healing. I have to get through this week and back to functioning before they can knock me back down. 

My John will be here shortly. My rock. My heart. Without him, my babies, my family, I am not sure I would still have my smile, still be angry as I have ever been, and still have my love. My family is an amazing group of Northerners who have endured more cancer than any family should. 

Hug your people extra long today. If you see my little people, poke JM, and hug Mary from mommy. If he will let you hug him, go for it, but beware. He's a little "to cool" at times. 

Xo

Update

3 highly likely causes of my issues:

1. Medicines

2. Tumor pressure on bowels (tumors that I have)

3. (Most likely this one) Gastraparesis: neurogenic parts of bowel

Meeting with more docs later/tomorrow to discuss this as it is the most likely

Starting a medicine tonight, amitzia?, hopefully. Sadly only comes in pill form which isn't great for me. Need to restart the motility/neurogenic responses in my bowels. 

Well, the Thoracentisis stunk, but it is over. Drained a little over 2L off left lung. I'm totally opening my own home brew shoppe at some point. Still breathing daintily, from that, but you would too if they did it. 

Apparently have a temp now that they are looking at as well. I'm thinking I'm going to have to blow air into that machine with the balls?  That should be it. I'm a little sleepy, but trying to keep down some broth, so upright I will stay for awhile longer. 

Slept okay, but did not maintain my dinner. Looking forward to bathing, a walk, and forward progress. 

Thank you for thinking of my family and me. This is harder on them, because I am here, and they are... everywhere. Xo

Sarah Cannon, Part Deux

Admitted to hospital, again, yesterday. Have had vomiting and nausea since the 13th, with complete inability to keep ANYTHING down, nothing. 3 office visits to combat dehydration and try new meds. etc., nothing has worked. NO food or drink maintained in over 7 days. 

CT of abdomen is clear, so no blockages, which is "good" but horror movie sickness continues. Also now have pleural effusion (fluid near lungs?), and will have a thoracentisis this morning to remove that liquid. 

Combine all this with low grade temp, sore back, vertigo, unsteadiness, and a few more personal issues and you have me....  I'm starving, thirsty, miserable, and very tired. 

Thank you for thinking of my family and myself. 

Clear head, still on the mend

Brain CT & MRI were clear, PTL! EGD of esophagus, tummy, and beginning intestines explained a few of my issues but not too much. Came home late Tuesday with a bag full of scripts, orders for vestibular PT (for my insane vertigo,) told to walk, and rest greatly, and a list of things to implement from Home Health. 

Slept most of yesterday when not hiding from housekeeper, and today spent the day in Nashville with new oncologist (clinical trial guy.). CANNOT start clin trial until my Ascites, my malignant abdominal fluid, issue is under control. So.... The next best thing?

 They NAILED me with chemo. Max dosing allowed for Doxil. Side effects, freaky hand foot rash and hair loss... Bring it. Anything to get this hot mess under control. 

Still not able to eat or drink much at all. I've lost 11.3 lbs in 1 1/2 weeks. 

John, Mary E., my sister Pam, and nieces are on their way to Chicago for Cheer US Finals. And the American Girl Doll store. 

Go Emerald Lynx! Bluegrass Cheercats #1!

Sadly, I am not travel-worthy.  Grammy was going to meet them, but instead showed up in my driveway today to help shuttle JM and with things I can't do, or while I sleep cat-like hours. Grammy, in JMs words "mom, you are going to feel a million times better, just because Grammy is here to rub your hand."   Smart little guy. 

Learned a few lessons this week, life DOES come full circle. Be kind, and others will be kind to you, help another, and others will help you, love endlessly, and you will be shown endless love. 

Xo

Quick Update

Update:

Checked into Sarah Cannon Cancer Center last night and staying at least another. 

Nausea & vomiting for a few days,  dehydration, vertigo, ascites filled abdomen again.  Had a brain ct (clear!) and going to have a MRI tomorrow just to be sure the CT was true. Paracentisis later today, this will be #4 in 2.5 weeks, and an EGD (tummy scope) tomorrow. 

Thank you for your love, care, and concern. 

Please continue to think of and pray for my family, near and far. 

Soda Machine or Abdominal Spigot?

Ever felt like a soda dispenser at an eatery or had an intense desire to have a spigot installed in your abdomen?  Strange to imagine, even more strange to  actually wish for!

Had more fluid drained today. 1.4L. I'm so going to start my own homebrew company someday. 

Good news? I had it drained! Bad news, this may happen again (insert language of truck driver). 

If it keeps up, I might get my own tube to drain at home! Barf-o-Rama. I keep the mantra of "better than a poop bag" on repeat in a tucked away section of my mind. 

Meet & Greet Thursday morning with local clinical trial dr. Still looking at other places, MD Anderson, UABirmingham, Duke...., but have also learned that a lot of centers "share" their clinicals, and while a trial that is a right fit for me may not be in Nashville, they will follow protocol for me here.  Love reciprocity. 

What else do I love? Crazy sisters, brother in love, and nieces who drive 4.5 & 12 hours straight just to peek at me, fuss in my kitchen, attempt to straighten my spices, and have a GREAT need to lay hands on. Their love knows NO boundaries, their fight has NO fear, their strength is that which I lean upon daily. 

Thanks for peeking at me. Will update Thursday.  

Feeling fair, cancer bites. It doesn't mean I don't love, giggle, or embrace joy. It does mean that I screen my calls. It does mean that I screen my texts too.  I means that I cry at home, and tell others, that I'm great!" Because I am, and so are you. 

Greek Goddess?

Ascites... Sounds like the name of a Greek Goddess, right? Nope, accumulation of fluid in the peritoneal cavity. Past several weeks I've had some pains, short of breath, bloating and more.   

Why?

I spent good part of day yesterday at JSMC due to my gyn oncologist, Dr. Numnum sending me there worried I had a pulmonary embolism bc of all my issues. 

Diagnosis: metastatic ascities. Free flowing fluid in abdomen and pelvis that is cancerous. I just had a paracentisis done to draw it off. They drew a little over 1.8 Liters! Wowza. Looked like a homebrewed beer. Get to go home in a few. Hurt like a MOTHER as the lidocaine didn't set in with me very well. Wow. 

Also, I am being referred to Sarah Cannon Cancer Center for clinical trials. My CT from Wednesday shows I've not responded to chemo that began in December and it has spread a bit.  I will like at clinical trials elsewhere as well. 

This is all I know, for now. 

Thank you for allowing me to share. Power in prayer. Pray for my babies, my hunky hubby Nurse John, my sisters and brother, my mom, Jaquie. 

Be kind, be helpful, enjoy the sunshine, and be joyful in all you do!

In like a Lion....

March comes in like a lion.... and yes indeed it has!  Tomorrow will be our 3rd inclement weather day, and for my district, that is HUGE!  Came at a good time though, as my labs from this morning came back in an hour ago, and my white counts are less than half of where my oncologist would like them to be.

Busy as beavers we have been!  John Michael turned 10!  Where has time gone!  Our blue eyed baby is double digits.  We had fun celebrating his birthday at the KY State Youth Wrestling Championships.  He placed 2nd in state.  His eyes are on the top of the podium for next year.  Here are a few photos from the day.

win by pin!

championship "face off"

  

2nd place State 2003-2004 birth year, 84 lbs. 

Mary Elizabeth is enjoying the life of a 7 year old.  She was so excited to see some of her favorite ladies who are currently cast in roles of our local theater group's production of Cinderella.

   

Loving our winter weather!

cocoa break :)

planning how to assault me, again, with snowballs

sledding, even fun for the 40+ crowd!

my little penguins

Dad was not expecting this addition!

Along with the winter fun Neutropenic precautions are back in place, so home /isolation/mask wearing is my prescription until they are back up.  Will recheck Friday.  As always, there is lemonade to the lemons!  My counts are low bc the chemo nailed me. It is also nailing the cancer. (we hope!)

It nailed me Big time.  I will nto be doing the Carboplatin desensitization, as it is qute an arduous process, and even then, I would only recieve less than half of the normal dose.  As such, my Gemzar dose was tripled last Wednesday.  I was not prepared for what came next.  Thursday, I was semi functional at work, slept horribly that night, sweats, chills, tremors, nausea.  I woke to my alarm and showered for work, then ... a giant brick wall of blech! hit...  All the nasty chemo can bring, with a side of headache, chills, sweats, and extreme exhaustion.

I woke Saturday and prepared for the day bc I had committed to help score papers for my son's academic team competition.  I was never so thankful for a cool classroom at the end of the hallway.  I thoroughly enjoyed scoring the papers, reading the 4th and 5th grade writer's written words was so lovely.  One common prompt, but twelve completely different writers.  JM and his pals did well that day, with his school scooping up all the 1sts, and having a great day with their same age peers, celebrating one another's successes.  When we left, I returned to zombie status.  :)

Woke Sunday to feeling more normal, and have felt well since.  The ever present tired, and the newly added vertigo remain, but all just a drop in the bucket.

So no chemo now for a few weeks.  My CT is scheduled for 2/19.  This is to look for 1 hopeful and 2 possibilities: shrinkage of tumor sites, no change in tumor sizes, growth.

In the meantime, I'll be busy with all things I love: being a mommy to our babies, being a wife to my love, and being a good patient, working to be healthy.

Be well, be kind.  Help, love, apologize, be honest.  Make a mess, enjoy it.  Be blessed.

Thank you for tinking about me, as I think about you.

An Unexpected Sign

Was it the "Jesus sun" I mentioned earlier this week? 

I woke late to sun beaming through our window directly into my eyes, blinding me almost. The rays did not bother, but made me smile and and teary. 

A sign to me after a rough week for others and myself in many ways. 

Praying for the warmth and joy of the sun to rain down upon my dear friend and her family today as farewells are said, and all days filled with memories, smiles, sadness, and longing. 

And God said, “Let there be lights in the expanse of the heavens to separate the day from the night. And let them be for SIGNS and for seasons, and for days and years"

Genesis 1:14

Friends, Cancer-a-versaries, Secret Whispers

Wow!  Nearly a month has passed since my last update here.  In my mind, I've updated many times, but in real life, apparently not so much!

I have been busy, busy, busy!

I WAS able to make my "girls" weekend in Michigan.  When I say girls, I'm not talking 2 or 3.  I'm talking 20-30 of my smokin' hot sisters from college.  Women I lived with, some for 4 years.  Most of the women I have not seen in nearly 20 years.  Due to our closeness and friendship in college, and our sharing a "HOME" for years, a decade or two may pass, but it seems to be only a moment.  My sorority is not one that you see labeled on cars, spread across the country.  'Tis one encased in history, legacy, and uniquity.  Soronian, Iota Kappa Omicron, is the oldest inter-collegiate sorority in the US.  Our House, Sperry Hall, is a historical landmark, that encompasses beauty from the 1st to the 3rd floor, and keeps the fun down below.

Sperry Hall

 

Some of "my pledges"                                    Tiffany & Me reminiscing!

     

<3                  Mary Margaret Dean Ellis... we hold so much love

 

Peanut, Tiffany, and me... wondering why Mott still looks the same 20 years later!

This weekend was what I needed, I just did not fully realize this until I saw my girls.  

On my way to MI and home, I was beyond lucky to steal some time with my parents, my sister Pam and her girls, and my sister Laurie and her family.  While all too short, I'll take the moments.  Plus, Grammy cooked.  Something about my mother's cooking fuels the soul, warms the heart, and refills my strength.  Somehow I cannot get enough of her time.  

Had some adult fun, 2 weekends ago.  While I did not win the $10,000 I was close!  As my pal Foster said, "bullshit" is how I felt when my name was the 189th drawn... rat bastards!  I had my fun, enjoyed some Pirate Punch, and was thrilled at the opportunity to attend.  Grateful for our friends that bought our ticket for us.  It was medicine the doctor had not ordered, but much needed!

Cancer tx has been a bumpy ride as of late.  Another round of neutropenic precautions, but this time, I pushed the system and was able to work, just in isolation.  I had a fun time working at Central Office.  Made lovely friends, and accomplished many tasks for others while working on restoring.  My platelets continue to be a pickle, but came up enough last week for me to have chemo.  

Ah, chemo.  My last tx was 2/12/14.  All was going well, until.... the switch to my Carboplatin.  Nothing like a good anaphylactic reaction to get you going.  Despite having it 2 times prior, it seems that my system is not a fan.  Quick response nurses, and a doctor that must have sprinting experience, most everything was remedied within 5 minutes.  The multi doses of Benadryl knocked me out for several hours.  I may have to wear a tee next tx that says "sorry I snored like a truck driver" as an apology to the other patients.  I (hopefully) will continue to receive this drug, as it is what I need, but will go through chemotherapy desensitization.  Good times.  

I say hopefully, as I have labs tomorrow, to see if I can have tx Wednesday.  Wednesday is just Gemzar, so easy as pie!

A scan should come soon.  Not a PET, but a CT.  A check of disease status.  Have my spots shrunk? Maintained? Progressed?  These answers will drive my medical plan.

"Celebrated" Cancer a versary #1 last week and #2 is tomorrow.  

2/13/12 was the date of my surgery removing my intitial tumor.  

2/18/13 was the date of the removal of the "new" masses in my abdomen.  

My sister Pam just had her 1st!  Woot!  Woot!

Cancer a versary is an odd word, but one that I will celebrate for the rest.  of.  my.  life.

My kiddoes are GREAT!  Rocking the academics, cheering yesterday and this coming weekend, pressing forward on academic team, and prepping for elementary state wrestling tourney this weekend.  We are loving all that we do, and have even more time doing what we love most, being together.  Children of cancer are a unique bunch.  They have compassion and empathy of those 10 x their years, but still have the ability to just be kids.    

So thankful for my friends, near and far.  I pray for each of you daily, and thank you for thinking of me.  Please remember to think of others as well.  Not just those that have, or have had this egregious disease, but those also touched by it.  A slight touch, or a punch in the face, it is all the same.  

This Saturday, my dear, dear friend lost her father to cancer.  My children's pal lost his grandfather.  Mr. P was a gem.  From the first meeting of him and his wife, I secretly fell in love.  His quiet demeanor, the love in his eyes held for his wife, the caring and love he so quietly showed his daughter, his grandson, his friends....  His hugs were gentle, but true.  His words soft, yet honest and direct.  He made me smile, and giggle.  He warmed my heart, and the hearts of my husband, and my children.  In his own quiet way, he welcomed my family, into his.  I was able to share a moment with him while I spent time with my friend.  I whispered some secrets to him, laid my hand in his, and prayed from the depths of my being for him.  I changed that moment, for this I know to be true.  I sent a message, and will patiently wait.  I am honored to have known him.

Life is tough, it is.  But there are days, when you see (as my kids call it) the Jesus sun.  The rays splaying individually as if each separate one held a secret or a power for one special person.  I saw a bit of Jesus sun today, and for a brief moment, I felt one of those rays was coming towards me.  My hope is that my family feels those rays, that you feel those rays too.  Strength from my family, my friends, my God... all encompassed in some sparkly light.... The best medicine of them all.

Be well, be kind.  Help someone, apologize to someone, forgive.  Hug, smooch, hold hands.  

Germit?

I'm a Germit!= a germa-phobic hermit... My platelets and ANC (white) counts are lower than ever. crap-ola

Words like:  "It has been discovered that her immune system is severely compromised due to her most recent treatment and is unable to sufficiently fight off any minor infection.  It is our recommendation that she take whatever measures necessary to be exempt from being around sick people or children who may be sick whether it be isolation while at work, or be excused from work."  make me grumpy... pissy... mad.
I'm not to kiss: my children, my husband...  Public places, wear a mask.  Watch my crazy bruises for swelling.  Check my temperature every 3-4 hours.  I'll .admit, I cried when the nurse told me I could not have chemo today.  I cried at school, in front of two co-workers.  I hate showing that side, but I needed to cry.  No tears for sadness, or grief; tears of anger, pure anger.  Being a chemo/cancer patient rule follower, I do all that I can to stay ahead of the game.  Was not expecting this curve ball.  No movies, no visitors, and honestly? I'm not even answering the phone.

All will be well in due time.  I am off work through Friday, with a lab re-check all day.  Numbers back up?  Back to work, with precautions in place: no hugging, limited facial contact with kids (I teach 600 and love them all!), and frequent hand cleaning precautions.  Miss my fellow "Lions" who so often are my rocks...

I've been feeling like a rockstar.  This Gemzar / Carboplatin chemo combo rocks!  From March/April-August, I spent many a day not wanting to vomit my toenails up, now?  I want to paint my toenails!  Boogie in the kitchen with my babies, hug on my man!  I'm a little tired, and value mommy naps and bedtime greatly.  Hoping good eating, rest, and relaxation will put me back on course for chemo next week!

My girls from college are all getting together next weekend in Michigan and I NEED to be there!  There are so many that I have not seen in over 15 years, some near 20!  Fingers, toes, and hairs crossed!

Kiddoes are doing great.  Being cancer kids is not easy.  John and I work overtime to make their lives as normal as possible, whatever normal may be.  We even went for a ride on a monster truck! SUPER fun!

JM is crazy busy, but handles it with grace and ease.  School work, wrestling, Tae Kwon Do, Academic Team, reading, gaming, NFL research... somehow he still finds time to just be 9.  Mary Elizabeth has been a bit more of a sticktight than usual.  She rubs my "sick" spots, and talks about her best friend getting better so we can play babies forever and ever.

So that is the update, for now.

Enjoy life, eat dessert before dinner, smooch on the lips!

Thank you for thinking of my family and yours truly.  I appreciate it greatly.  I rely on the strength of others more than you would know.

Be well, be kind, be honest, be true.  Be blessed.

Suzanne

Round one, DONE!

Chemo round one is 100% complete!  After my first day, it was MUCH easier on the system nausea wise, but a whole lot heavier Sleeping Beauty wise!  I remember laying down the first Friday night after dinner, have a vague recollection of eating something Saturday night, and poof! 'twas Sunday morning.   I'm up and around just like regular people!  I drive, shower, vacuum, play, cook... just plain ol' regular 

As Monday began to pass, I found myself longing for my bed.  Instead of the 1500 tc sheets, a day of cheering for my favorite 82lb. wrestler lay ahead .

Wrapped up my 2nd day of this round today, short and sweet!  Stopped at Starbucks for my *free* macchiato (received the special cup from *bux 4 Christmas!), roamed Barnes & Noble @ Vanderbilt, then bought my first pair of skinny jeans!  The poor sales girl... Explaining the difference between skinny jeans & jeggings.... she finally just came to the fitting room with me.  She did thank me though, for taking the step to buy the proper pants to wear with boots, so that I would not have "the mom poof," and look like I was wearing jodhpurs with my jeans in my boots.

 Hoping for same succession of "easy post chemo days" after today, should be.  Have some issues to call about first thing in the morning, but knew they were possibilities, so will address, respond, and move forward.

If you have called, texted, emailed, questioned, and I have not responded.... please know that my intentions are not to be rude.  Cancer bites, plain and simple.  To tell that many times a day, share my daily health repeatedly, hear stories of people who knew/know someone who had or is going through chemo, well....it is HEAVY on the heart and the mind.  Think of me.  Think of my children.  Think of my husband.  Think of my sisters, my mom, my brother.  My oodles of nieces and nephews.  My amazing cousins, my precious aunties....

Cancer has weighed heavily on my family all the way back to the 70s when my dad was diagnosed. Then my Uncle John, next Uncle Chris.  Then me, next my sister Pam, then me, and now me again.  I.  KNOW.  THE.  STORIES.  I know about clinical trials, I know about culturing a cancer cell to test chemo response rates...

I also know that YOU might not know what to say.  That is okay, neither do I!  You do not have to say anything if it is uncomfortable, a simple everyday hello is great!  I love good jokes, corny ones, and dry humor!  If you want to share your concern / love/ support Possible Suggestions: "I'm sorry....Thinking of ...Praying for ...."  I'm feeling fabulous, and hope to keep it up!  If I look like I am lying to, just let me, 'kay?  and please, I beg of you.... no death.  No asking about staging, prognosis, nothing.

John Michael and Mary Elizabeth DO know.  I am very honest about treatment with them, and they "seem" to be fairing well.  JM was ticked because he only asked for TWO thing from Santa, and a cure for cancer was one of them... Anyone got connections for two Super Bowl Tickets?

Our children are rockstars across the board.
JM continues to excel beyond expectation academically, yet struggles at time to find his passion.  I'm thinking of teaching how to "code" on a computer, just need to dust off my own knowledge.  He LOVES technology, so it may be a win!  He just received his High Red Belt in TKD, now working for his recommended black belt, so big!  Wrestling continues wonderfully, and he is also busy studying for his lower school academic team.

Mary Elizabeth is now in her 3rd year of competitive cheer, and is better than ever.  We are so thankful for the organization!  Also, she has finally discovered a love for independent reading.  While still quite enamored with storybooks, and being read to, I've found her numerous times snuggled with her flashlight friend and a book, post bed time.  She is working very hard in school and has done well.  She LOVES to count coins, master her spelling words the first night, and any arts and crafts activitiy she can find.  She has added another child to her family.  American Girl Doll Marie Grace joined her this Christmas.  While Rebecca is still her favorite, Mary Grace has made friends nicely with Molly and Rebecky, her bitty baby.  She LOVES her dolls and plays with them daily.  Dressing, roleplaying, socializing, planning, plotting, designing... her American Girl Dolls, Barbies, cheer, and crafts ( and now reading!) are her passions.

John has transitioned into a local job as a civilian instructor.  He has added a goatee to his repertoire, and I'm enjoying seeing him so nicely dressed each day.  I've taken to packing his lunches, along with the kids :)  He also received a new fire pit for Christmas and has enjoyed building one nightly.  I think the kids and I have eaten our weight in s'mores!

Teaching STEM is still a gift.  Having 600 kids to know is not a challenge, it is a blessing.  Their smiles, stories, hugs, and amazing successes are all that I need to know that I am where God needs me the most.

Well, no chemo until the 15th.... I'll try to check in before then.

Be strong, be joyful, be amazing, be kind, be blessed.

I am thankful for each and everyone lifts my family and myself in thought, wonder, in prayer.