Yes…but there “could be” a new one soon

Mike, as you can imagine, has been picking up the slack around here.
While TC was in the hospital all that time, there was a “lack of attention” I guess you could call it, from me regarding the home front!
Couple this with trying to get my new Real Estate business off the ground and I am basically a guest in my own home of late.
Mikey has been my savior, I readily admit that.

But now let’s not get all crazy and bleary-eyed over this!

I mean, yes he travels extensively for work,
And yes, he has managed the kid’s schedules around his own.
Yes, he did go to both kid's “Back to School” nights AND “Meet the Teacher” nights.
And yes, I am of the opinion it is purely coincidence that I was again unavailable for teachers conferences last week, but REALLY…
Do I deserve THIS?

“Mr. Baker, Is there a Mrs. Baker?” asked one of Jordan’s teachers!!!

I will never shut him up about that as long as we both shall live!
I have heard so many different versions of his answer by now, I’m starting to believe him.

“Oh, she’s back in Rehab again…we’re really hoping she sticks to it this time.”
“It’s ‘Girls Night Out’ again tonight; she should be up by noon tomorrow if you need her.”
“She’s at the Credit Counselor…she has a big shopping problem.”

Four years I’ve been home with these 2 kids.
Hauling them, healing them, hugging them and hollering at them.
Is there a Mrs. Baker???

Yeah…and she rocks!
Just like Mr. Baker.

(I love you Mikey, and no… this blog is not about you. Really.)

Run, run, run…

Faster, faster.
Don’t look back.


We are all blessed to live in an age where cancer research and drug development are giving cancer cells a run for their money.

Just a few short years ago, women (and some men) who were at this stage of breast cancer that TC is now, had no more options available to them.
In their cases, the cancer cells caught up with the drugs, out-smarted them and ruthlessly took their lives.
Today, we thankfully do have a few more options; TC is test-driving one of those today.

Released from KU on Monday convinced the Staph infection was under control, she is fever free today and that’s a huge relief.
She came home hooked up to tubes and machines, far from comfortable but grateful to be in her own bed.

Miraculously, and to the shock of her doctors who had declared the surgery unsuccessful, her bowel came back to life this week.
In the interest of humility…I’ll leave the details out of it!

Today Mom packed TC up and took her to see Dr. K, her oncologist.
He started her on Abraxane (at $4200. a dose!), a chemotherapy drug which is coupled with Tykerb, a new generation of cancer medicines that more precisely target tumors without killing lots of healthy cells. Tykerb was just approved by the FDA in March of this year after stopping studies early because of its phenomenal results on just 321 women. We are praying that TC responds positively to the drugs as well.

In the meantime, she is still on a feeding tube.
It is unclear at this point if she will be able to transition off of it, but that is our hope.

The doctors had to remove her port last week because of infection.
That is a major bummer, her port was how all her intravenous drugs got delivered to her.
Now she’s back to IV’s and her veins are weak, resulting in great stress.

TC’s spirits are low, there’s no denying that.
Some days we don’t even try very hard to lift them.
TC is in a place most of us cannot relate to; we’re learning to sometimes shut our mouths and just let her be.
This is a journey she needs to navigate on her terms.
We must accept that we cannot direct it for her.

So today, she’s still winning the race.
One step ahead of the cancer cells, running fast and not looking back.

Hhhhhhhhhhhhhhhhhhh

I hope that sounds like a huge sigh of relief.
Because it is.

Man, I first gotta say…
No one has more fight in them than TC and her doctors.
Nobody.

That said...we’re at the top of our roller coaster ride this afternoon.
And it feels great!

First, a little about this past week which was not good.
Infection and fever.
Pain and fear.
A difficult medical procedure.
And finally, to top it all off…
Really bad news.

We were told the surgery "apparently" did not work.
The likelihood of TC ever getting off her feeding tube was doubtful.
This according to, you guessed it…
"Glass-half-empty guy".
This news was a real blow.

Next up was “Dr. Nice Guy” and his crew of interns.
He shared not only his grave concerns about TC’s physical health, but for the first time he discussed his fear that she may be losing her spirit as well.
I concurred with his assessment, telling him we as a family long ago promised TC that when she’s ready, we will back her.
But we both agreed if anyone has another rally in her, its TC.

So clearly, it was one tough week.
But that was then, this is now…

TC’s regular oncologist came by today, a man she feels extremely close to and safe in his care.
We don’t see much of "Dr. K” these days since she’s been at KU.
That’s just the way it works.
But all 3 docs assure us that they are in constant communication with each other and are working toward the same goal...TC’s quality of life.

Dr. K came in this afternoon and sat down on the bed with her.
They had a very emotional conversation.
With tears trickling down his cheeks, he said he loved her, has not given up on her and that he has a plan.
All he needed from her in return was to keep fighting, he would do the rest.
TC's spirit immediately and miraculously returned!

I will explain the plan when I better understand it myself.
For now, suffice it to say it is aggressive, yet not “too” invasive…relatively speaking!

She is still fighting a staff infection; that is our biggest concern of the moment.
The plan is to get her home next week, set up in-home health care, and get started with Dr. K’s plan.

Call me crazy…
But this was a good day.
Hope yours was too!

A Pause in the Pain

Based on emails I’ve received and phone calls as well, I know my silence is worrisome.
My head is exploding with thoughts and fears but the words won’t come.
I’ve been here before, I recognize the signs.
This time I will fight through it.

Bare with me a couple more days,
I am gathering my strength.
Clearing my head.
Praying for better news to share.

In the meantime, know this…

Sometimes, amidst all our pain, we pause for laughter.

Agitated

The good doctor uses that word a lot. (“The bowel is agitated. The wound is agitated. She spiked a fever and got us all agitated”)
It’s sort of grown on me.
Agitated.
Great word; It just rolls off the tongue.

My Mom (from Brooklyn) doesn’t use the word “agitated”.
She apparently doesn’t get “agitated”.
She gets “the agita” (Aah-ji-duh)

That perhaps, is an even better word.
I might have to share it with the good doc tomorrow.
Depends if he seems agitated or not.
(See? So many uses for one word.)

Ok…now I’m probably giving YOU agita.
I’m Sorry.
I’m tired.
And agitated.
This is pathetic.
But fun.
I’m going now.

Good Night.

Slow to No

Progress that is.
TC is healing from the surgery, but shows no signs of it having fixed the problem.
That said, the doctor says that is absolutely still within the realm of their expectations for such an invasive procedure.
Obviously, this is the “glass half full” guy.

TC had a non-eventful day, but seemed more tired than even previous days.
Yesterday we had her up, she even had a shower.
Today…nothing but sleep.

The doctors of course want her up.
It only makes sense that movement is her friend. (Think lungs, atrophy, blood clots.)
But we her family find ourselves feeling conflicted; the staff wants one thing (for the good of the patient), but she is tired, experiencing pain and doesn’t have it in her to go for a simple stroll.
These are for me at least, some of the toughest times.

The physical demands and time management issues are a walk in the park compared to the head trip we’re on.
She “had” a fever a couple of days ago; big, big red flag.
They put her on 3 separate antibiotics and every day we were updated on the cultures they were trying to grow.
For the last 2 days, they’ve been unable to grow anything…great news.
They’ve weaned her off 2 of them, one yesterday, and one today.
Huge relief.

Late this afternoon…fever.
Here we go again.
Dig deep.

And pray.

4-1-1-6

That’s TC’s hospital room number.
It’s interesting how something as insignificant as a random number, can quickly become a thread in the fabric of your life.
It’s a number those of us in the caretaking rotation won’t soon forget.
I am here now.

I don’t think I have what it takes to work in a hospital.
I admire every single person, no matter what their official role is, who I have met and in some cases come to know at KU.
These people definitely have what it takes.

Mary is my favorite nurse of TC’s; she’s here today but assigned to other patients.
Bummer.
Today TC has Margo, a new nurse to me…I’ll be watching Margo closely.

Didi is on the board as TC’s aide today…Love Didi!
She is a young compassionate woman who despises the “celebutante” movement going on today.
Didi wishes Britney Spears and the likes would go live in a truly depressed nation or even their own inner city for six months.
She is young and optimistic enough to believe “those girls” can still learn compassion, the joy of giving and instill those lessons in other young people.
Like I said, Didi is young herself, but God bless her optimism!

Dr. “Nice Guy” and his 5 interns should be here soon.
That man is a gem; demonstrating just the right mixture of love and authority.
He’s a “glass half full” kinda guy.

Then there’s Mary; an old, frail woman, very serious in her duties.
She is a Catholic Eucharistic Minister who TC had been receiving Holy Communion from every day.
TC was upset the first time Mary came in after her surgery; being unable to eat, she told Mary she could not receive communion.
The other Mary (my favorite nurse), was in the room at the time and overheard TC’s distress.
Nurse Mary insisted that she, TC and I could split one Eucharist in tiny bits of 3, and all partake in the Holy Sacrament.
(No one seemed to notice that being a “Cyclical Catholic” myself, I was hyper-ventilating over this offer; but lightening didn’t strike…maybe all is right with me and the Lord after all.)

Update: Oh my! Dr “Nice Guy” was just here and I am not feeling the love.
He was 100% “Dr. Authority” today, a side of him I’ve not seen.
He’s got me all verklempt now, I’m a nervous wreck.
(His manner, I should explain, was directed at his interns, not us!)

Joe, a third year intern apparently gave the good doc some erroneous information on TC this morning.
For a moment there I saw Dr. “Nice Guy” turn into the badass Dr. Bailey on Grey’s Anatomy; Joe playing the role of George, the poor little intern.
Ouch!

Today’s lesson learned:
This is not a place for the weak.

And TC fits right in.

One Love, One Heart

Let’s get together and feel alright.
(Written and performed by Bob Marley)

She was supposed to be named Bob, after Bob Marley.
She was just 6 weeks old when we brought her home.
Mike and I were newly married and still high from our Jamaican honeymoon.
Reggae music was in our hearts.

Mike resisted getting another dog; we already had Nubi at home, our first golden retriever.
But this pup claimed Mikey’s heart and it was he who named her Ziggy, after Bob Marley’s son.
The name suited her well.

Harmonically, Reggae music is often very simple, and sometimes a whole song will have no more than one or two chords.
Ziggy was simple that way too; in her almost 16 years, she never once went to the vet other than her yearly shots and checkup.

Her strongest trait was loyalty.
When I was pregnant with the kids, she would lie across my belly and protect them.
One day during my first pregnancy, she lay on my belly and whimpered.
She knew before I did, that our baby didn’t make it.
Ziggy never left my side for days after that.

Jordie and Nick have never known life without Ziggy.
Today they start that journey.
Mike and I took her in this morning, when it was clear she could not go on in her deteriorated state.
It was a peaceful transition from life to death for Ziggy; painful beyond words for Mike and I.

Life was good to Ziggy,
Ziggy was good to us.
Now she is in heaven with all of her “Rasta-Furry-an” friends.

We miss you Ziggs.

Let’s Call it a 5

On a scale of 1 to 10 that is.

Dr. Surgeon did a nice job.
The surgery was considered exploratory; he was not sure what he’d see once he got in there.
It wasn’t pretty; TC has a lot of cancer in her belly.

Although disappointing, it’s not a surprise to us.
Never during TC’s “Bonus Round”, as I refer to her miraculous summer, did her oncologist imply that she was cured.
But that doesn’t mean we didn’t entertain the thought.
She sure “looked” cured.

So here we are again.
Waiting.
The surgeon did what he could.
He removed a lot of tissue and is hoping that will clear her blockage.
The tumors he could not touch.

5 to 7 days he tells us.
That’s how long we must wait.
As she heals, we’ll find out if her plumbing is working.
If it does, we’ll call today an 8.
If it doesn’t, today is a 2.

TC was a champ today.
She dug deep and got her head and heart where it needed to be.
She’s still down in recovery; she doesn’t know the outcome yet.
And truthfully, neither do we.

5, 8, 2…
There’s only one number I know for sure.

My sister TC is a 10!

Remember this?

Tonight is an anxious night; that’s stating the obvious.
But we have TC in a really good place.
Her mindset is “game on”.
She told the oncology Doc today, “Let’s get after it, I got things to do!”
I like that about her.

I also like a good “sign” from above.
They’re everywhere actually; we’re just to busy usually to notice.
But once in a while, BOOM…they smack you right upside the head!

Although not close enough to the action this year to snap a pic,
Jordie and I once again witnessed an incredible fireworks display in the sky above.
And just like last year, I don’t know the real reason for the fireworks display,
But I like to think I do.

It’s a good sign.

(Surgery is scheduled for 11:45 am Friday morning. Good juju sent our way is encouraged!)

Fill’r Up

When forced to deal with a doctor you are meeting for the first time, it is vitally important to possess certain skills.
Chief among them is the ability to read people accurately and quickly.
I fancy myself in possession of such skills, albeit admittedly, I error on the side of caution.
This means if I am not an initial fan…I stay open minded long enough to give it another shot.
But I usually get it right the first time.

This brings me to Dr. Surgeon.
Surgeons are a different breed.
We’ve been dancing with doctors enough these past couple of years to know that as fact.
Rarely, (never actually in our case, but I hate to “totally” stereotype) do you find a “people person” in the bunch.
They get in, do their job, get out, and move on.

They are the best of the best.
And the best are cautious.
A good one will ask themselves first, “Is the risk of doing more harm greater than the probability of correcting the problem?”
No room for egos here.
But that we all know is an oxymoron.

Herein lies the dilemma as I “think” I understand it.
The surgeon is always going to give you the worst case scenario.
Hell, in the medical world, it might even be his fiduciary responsibility, I don’t know.
Regardless…I understand it.

We don’t however have to “believe” that his scenario is necessarily going to be the outcome.
And therein lies the trick; disengaging your heart from what your brain just heard.

Dr. Surgeon is a “glass half empty” kinda guy.
That’s my take.

The rational side of me knows that he has data and experience to back him up.
What he doesn’t know about us is that we have some pretty impressive data and experience backing us up too.

Almost two years ago, we had a different “Dr. Surgeon” in TC’s hospital room.
He told her to go home and get her affairs in order; she had 3 or 4 months left to live.
Well she sure threw his stats out of whack!

I hope I have an opportunity to see the good doctor before TC’s surgery Friday morning.
I’d like to offer him a full glass of water…

And some whiteout for his stats.

Hurry Up and Wait

Such is the life of a chronically ill person and their family.
Wait on a hospital bed, wait on the Doctor, wait on the medicine, the tests, the insurance…
Wait, wait, wait!

So that’s what we’re doing now, waiting on the surgeon who has three scheduled surgeries today back to back.
This man is an oncology surgeon, which means he can maneuver well around scar tissue, a major deterrent for most general surgeons.
He is we’re told, worth the wait.

TC is in her room, a nice big private one in the new wing at KU.
I wish I could say she was resting comfortably, but they just inserted a drainage tube and she is anything but.
Her surgeon will be in late this afternoon or early evening, I highly doubt any surgery will be done today.
So we wait.

The highlight of the day was when TC received a surprise visit by “Buccleigh”, an Old English sheepdog.
Most of you know that TC, Founder and President of KCPetConnect, loves animals more than she loves “most” humans.
Nothing could have brightened her day more.
Buccleigh promised to come back tomorrow, which is something TC can really look forward to.

Thank you for your overwhelming response to my prayer request.
We are truly humbled.

Our “New Normal” Sucks

Everything I wrote in last month’s blog entry titled “The New Normal” was true; in theory only it turns out.
The “theory” that we must accept our new normal, is being heavily tested tonight.

We have known since late last week that contrary to what we were initially told, TC’s pain and nausea is not an intestinal bug.
It is in fact, an obstructed bowel, a very serious condition.

For several reasons, chief among them the surgeon best suited for the job was out of town, they cautiously held off the surgery until this week.
We were on high alert all weekend with TC, diligently watching for any signs of rupture.
The hospital had an emergency plan in place, if there were any signs of such a dangerous complication.
The good news, we made it through the weekend.

Tonight TC checked into KU Medical Center; she should have the surgery tomorrow.
Many, many months ago we asked all of you to join our team.
The entry fee to join was simply a prayer for TC.

I know you are still on our team.
I know this because so many of YOUR prayers for us have indeed been answered.
I humbly ask you again tonight, to say a special prayer for TC.

Pray that she not be scared, because she is.
Pray that the surgery is successful, and that she heals quickly.
And pray for my family, especially my Mom and Dad… that we once again find the strength to face what might lie ahead.