For Breast Cancer Patients and Survivors

God has shown me a little tiny piece of the enormous burden you bear.

The worry.

The fear.

The pain.

I am still very sore and bruised one week after a biopsy. I cannot even begin to imagine the suffering of a mastectomy. And I’m talking about just the physical trauma alone.

I’m not saying I get it or anything like that. I don’t. But I have a new heart of empathy and understanding specifically for this disease.

To you, breast cancer patients and survivors, I am thinking and praying for you today.

Life can really really really suck. But there is hope in a future life without pain and without sorrow.

In this world you will have trouble. But take heart! I have overcome the world. John 16:33b 

 

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And Now a Conclusion

I do not have any malignancies.

But I must be eventually going to war or something equally taxing. If trials really do make you stronger (and they do) then I’m gonna be one scary butt-kicker.

My doctor wants another mammogram in six months, but for now I can catch my breath.

God is faithful. Even if the outcome were different, I believe I can say that my faith would be unturned. I would be really ticked and annoyed and upset and falling into a chocolate cream pie. But the faith would still be there.

This is not me. This is God in me. Apart from His grace, I can assure you I’m not good enough to calmly handle a flat tire.

But God is good.

For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast. Ephesians 2:8-9

AB8238AB-D7E6-4070-A811-E9F564A2BD66Justin returns to clinic tomorrow for a check up and chemotherapy infusion, steroids, the works. Loads of thanks for continued support and prayers.

 

 

And Now This

The wall. The ceiling fan. The quilt.

Pick something to focus on.

The quilt. My mom made this entire thing, square by square. Like building blocks. Do you “build” a quilt? What is proper quilting lingo? I don’t know. I can’t even sew a button.

Pain travels from my chest down the left arm and back again. Surgical procedures will always be worse for you, my doctor said. I guess neuromuscular disease will do that to you.

Twelve hours ago, I had a hollow needle inserted into my left breast and tissue extracted. Then they X-rayed the sample and came back to take out more.

This was after two mammograms and an ultrasound. The doctor said if it is cancer, they caught it very early.

Bet they never had anyone laugh at this statement before. I didn’t mean to be rude or anything. But somehow he got it wrong. My son has cancer. And I already have a disease for crying out loud. I don’t have cancer!

But maybe I do.

The wall. The ceiling fan. The quilt.

The bottle of sedatives on my night stand. My doctor says I’m dealing with way too much. He’s concerned. Take the pills.

Maybe I will. Just so I can sleep.

I like quilts. I like this quilt. My favorite square is made from a dress I wore as a little girl. A skinny book nerd with glasses and untamable hair. But I wasn’t diseased then. I wasn’t fatigued all the time. I didn’t have to fight against the long hours because back then I mostly enjoyed them.

And now this.

But maybe it’s nothing. It’s probably nothing. I can already name two people who have had this done with good results. I can also name a few who went down the other path.

My husband. My three boys. The leukemia diagnosis. The homeschooling Justin. The dog, which was purely an act of love because I still don’t like him very much.

They all need me to be up and well, not maniacally counting quilt squares or popping pain pills.

So tomorrow I will get up, push through pain and act like there isn’t a freight train running through my head.

It will be okay. I will get negative results next week because they simply have to be negative. There’s just too much to do.

I did not plan to reveal this, but, tonight, I feel that God is pressing on my heart. Someone out there needs to hear it.

Unbelievably, my faith is still strong. This is not me. This is God in me.

Please understand that my boys cannot know about this. Therefore, no children they come in contact with need know either. At least for now. Thank you for prayers, but I won’t be talking anymore about this until we have facts. I will update on Justin soon. Until then, grace be with you, my friends. 

Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped. And he said, “Naked I came from my mother’s womb, and naked shall I return. The Lord gave, and the Lord has taken away; blessed be the name of the Lord.”

 

 

 

 

 

 

Cancer Mom Confession

IMG_9928After close to a thousand days being a cancer mom, I decided it was time to take care of myself.

Turns out tons of stress and a sour cream addiction is really bad for you. More specifically, my blood work shows vitamin D deficiency, high cholesterol and anemia.

I know, I know. No one to blame, but my ridiculous American diet eating self. Well, and, maybe some questionable genes.

Between friends, Jeff and my mom and step-dad, I have figured out a way to take breaks. Bless their hearts. Suppose now I should also get healthy.

The thirty-five-year-old version of me would have completely blown this off and gone to Taco Bell. But I like to think I now have bits of forty-year-old wisdom.

IMG_9927-1So I am crying into my quinoa, taking vitamins and replacing Oreos with blueberries.

My cancer parent friends, don’t be like me. Take breaks earlier in your child’s treatment. Even though you will feel the lie called parent guilt, DO IT ANYWAY. And, for crying out loud, get yourself something decent to eat.

If I temporarily black out and order a double cheeseburger, someone slap me.

 

 

 

 

Stay With It One More Day

If you haven’t guessed by now, I can tell you I have an active imagination. One of my college professors referred to it as “rich” in reference to an essay or something we were assigned.

So this is one of my recurring musings. I am driving home from the grocery store. But instead of turning, I drive past my street. I keep driving all the way to the airport. Leaving bags of groceries to their own demise and with only my purse and the clothes I’m wearing, I purchase a ticket for the next flight to Phoenix. I probably also buy a donut or cheeseburger. Maybe both.

Upon arrival in Phoenix, I take cab. “Where to?” the driver says. “Grand Canyon, please.” Now don’t worry. I’m not planning to jump in or anything. That’s not where this is going. It’s just that this giant, massive hole has always fascinated me, and I have yet to see it in person.

That’s it. I get there and stare at it for a while. Then what? I don’t know. I guess I go home and deal with the melted ice cream and chicken cutlets rotting away in our mini-van. I suppose it’s really a very anti-climactic fantasy.

I write from the desk in Nicky’s bedroom because it’s currently the only place I can get a moment’s peace. I left the kitchen table because the piles of laundry, broken kitchen sink, sunburned kids watching cartoons and drugged-out-cone-wearing-freshly-neutered dog laying on the floor staring holes through me was too disarming.

But, eventually, I have to go back downstairs and deal with it all. I also have to deal with Justin’s meds and physical therapy and home-schooling.

Who wouldn’t fantasize about running away? Being a parent is the most sacrificial, mind-numbing, thankless job in history. Yes, of course, there are amazing moments, too. But I don’t sugar coat the drudgery. Add a chronically ill child with special needs? Your mind starts to think the Grand Canyon is calling to you.

It’s not only me. I know you have problems. You sometimes write to me about them, and I am thrilled there is someone out there who gets it. How does one manage? Well, of course, you know my faith is the main sustaining motivator.

But I also say this to myself. Just stay with it one more day, Katie. And then I’ll say that again tomorrow and the next day and the next.

Just stay with it one more day, my friends. And lean into grace with every ounce of the weight you carry.

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A very special thank you to Joyce and the Kisses for Kyle foundation for this family photo taken recently at one of my favorite places, Ocean City, NJ.  

Day 875

Clinic went really well today. Better than it’s ever been, I would say. I attribute this to prayer and the requested Ativan (for Justin, not me, although I’m thinking I wouldn’t turn it down) to help cope with his now severe needle anxiety.

Justin is not feeling too great after the spinal and chemo, but Buddy is there for him.

Justin’s chemotherapy doses were again increased due to a very high white blood cell count. But we are still on track to end treatment on March 25, 2019.

Thank you for messages of encouragement and continued support!

 

 

Day 874

Tomorrow we are back in clinic for sedation, spinal tap and chemo infusion.

Don’t be annoyed with your kids if they fail a math test or blow out the knees of their pants for the tenth time.

I’d be thrilled if Justin could fail a test and rip his pants. Because that would mean he is at school being a kid, instead of having poison injected into his central nervous system.

There will be pain and screaming and sickness tomorrow. Yet, no matter how much I will its delay, I know tomorrow will come.

I get weary of it all.

80C88E8E-8D18-4890-B562-911CF554C207Most of the time I feel like the last scene of Rocky 2. Apollo and Rocky are both beaten and bloodied, down on the mat. Whoever gets up first wins. It’s a painful ten seconds, in slow motion, of them both struggling to stand, then falling, then struggling to stand again.

But what can I do? Freak out? Done that. Eat my emotions? Daily. Throw a tantrum? Been there. Scream and yell? You betcha.

I can tell you this. None of it makes any difference.

What keeps me from really going over the edge is faith. Faith that God is real, God is here, God is sovereign and God is Love.

I don’t know what God is doing, and I don’t like it. But I trust Him.

I’ll be face down on the mat, again, tomorrow, then trying like Rocky to JUST GET UP. Only I won’t get a trophy belt thing in the end, and Adrienne won’t be there.

I’m pretty sure this post is a big stream of consciousness mess, but that’s all I got tonight. Grace be with you, my friends.

 

 

 

 

 

The President Will Sign the STAR Act Today!

To all my cancer family and friends as well as anyone who is interested, President Trump will sign the STAR Act into law today at 5:15 EST. I am told the signing ceremony can be viewed on C-span and will be live-streamed on http://www.whitehouse.gov

This is a very exciting day for all childhood cancer patients, survivors, cancer moms, cancer dads and childhood cancer advocates. I have prayed for this outcome and am thanking God for His grace.

It has been an honor to join and work with the Childhood Cancer Twitter Advocacy Team (and Lee, our darling fearless leader!)  as well as the American Alliance for Childhood Cancer in my precious few spare minutes.

I am including a graphic made by my friend, Joe Baber, an awesome childhood cancer advocate, whom I met in DC last September. He GETS it.

But it wasn’t just moms who made this happen. This is the concentrated effort and tireless work of cancer families, non-profit organizations and advocates across the country. This is countless hours invested in writing letters, emails and messaging on social media. This is travel and sacrifice of personal time as well as exhausting many other resources. This is blood, sweat, tears, grief, suffering and prayers. It is not for the faint of heart. Join us today in grateful celebration. We earned it.

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