Oh, it finally feels like Easter is here!  First, the really good news, then an explanation.

Kevin is back on the TIL therapy trial!  He checks in in a little less than ten days (evening of May 30) and the actual treatment will begin June 1st.  This is just under one year from when we found out he’d recurred.  I cannot even begin to tell you what a wild ride it’s been, and also what a wild ride we are up for next.  I can only say right now that we are overjoyed and so incredibly grateful that our hope has been restored.  In case it’s been hard to follow on my incredibly incoherent blog, TIL therapy is Kevin’s last best chance at a cure.  And it’s a really, really good chance too.  The thing is, it’s hell.  I mean like, super duper crazy insane hell.  Like, it’ll make last year’s IL-2 treatment sound like cake.  I’m not kidding.

And we’re totally psyched about it!

Basically, the TIL therapy treatment in general has greater than 50% success rates.  The specific variation he’s on, with an infusion of IL-12 modified white blood cells has an even greater success rate, but the data set is so small that you can’t really speak in terms of percents.  Regardless, the outlook is good and we feel like we can let ourselves be psyched after Dr. Steven Rosenberg (only the father of modern immunotherapy himself) said he was “really excited about Kevin’s TIL cells.  They are showing tons of cancer fighting activity in the lab.”

So let’s get those TILs into Kevin’s body and put them to work knocking out his cancer!

So, why do I say it finally feels like Easter?  Well, for one, if you read my last post, you’ll know that I’ve been going through a pretty dark time with a lot of crappy things happening.  It’s been a time where I’ve felt pretty alone and also struggled with feeling hopeless.  Yes, we were grateful that Kevin’s treatment was working, but we also knew we were only buying time and were worried about our chances of getting back onto this treatment in time.  It’s felt kind of like I’ve been stuck in my forty days of wilderness.  And now, finally, I can really rejoice that we live as Easter people!

I’m not sure if I mentioned this in my last post or not, but I have not been able to make it through a church service in quite a while.  I often can’t even make it through the worship portion, because it’s just hurt too much.  Heck, we got the kids all dressed and ready to go, I taught Evie to say “He is risen indeed!” and yet we didn’t even manage to make it to church for Easter Sunday.  I can’t remember, either Kevin was sick or I couldn’t stop crying.  It all kind of becomes a blur after a while.

Consequently, I also haven’t taken communion in a long time (our church does it every week).  This past Sunday was the day that we remember Pentecost, when God sent down the Holy Spirit.  It was also the first day I’d taken communion since Erica died.  I fell apart again when I realized both of these things, but in a good way.  I feel like I’m finally reconnecting with God’s family and also coming out into the sunlight, basking in the comfort of the spirit.

Now don’t get me wrong, things are about to get really really hard.  But like I said, I’m ready to bring my game face.  I have to.  Like Kevin reminded me, there have been many, many times when I have taken care of things that have saved his life and these have been things that he simply wasn’t capable of doing for himself.  He reminds me that that’s why we sent the kids away for the summer.  So it’s time to get ready.

There’s a lot of things to do, now that we have an actual date and schedule and I’m so glad that I already took the step of faith of sending the kids out to my dear cousin and aunt in California.  They are settled and happy and doing just great.  I have been mainly focusing on resting myself and trying to get fully recovered from pneumonia.  My next task is to get the house cleaned out and cleaned up and ready for us to be gone for a month and then home convalescing with a husband with a brand new baby immune system.  I also have to make plans for how I’m going to get to D.C., where I’m going to stay, and how I’m going to most economically live for at least a month away from home.  I’m working on all these details, and so far we have lot’s of pieces coming together.

For starters, it looks like I’ll get to stay in the Safra Family Lodge for most of the days of Kevin’s stay, which is right next door to the hospital and a beautiful place (and did I mention free?!)  There will be a few days where there is “no room at the inn” so I’ll have to play those by ear and maybe crash in Kevin’s hospital room with an air mattress or something.

I’m planning on driving and bringing my bike so I can easily get around depending on how things go with Kevin (I remember last summer at Emory I drove to starbucks every morning for a breakfast sandwich for Kevin because it was literally the only thing that didn’t make him nauseous.  Who knows what it will be here, but I think it will be good to have a car and my bike.

The other thing I need to do is get through all the junk that has piled up in different parts of my house.  In the past year and a half of fighting this, literally right after we moved into this house, cleaning and uncluttering have too often fallen by the wayside.  I’ve got to get the house germ free before we leave, but before that, I’ve got to get it cleaned out!  I’m going to be ruthless with the decrapification, because less stuff is less to clean up, right?  I’ve got piles of medical paperwork to sort through and countless loose ends to tie up.

After praying about it and discussing it with Kevin, I believe that the best help I could have right now would be my for very close friend Lila to come fly out from LA and help me with all of this, then help me make the long drive up to D.C., get settled into the Lodge, and then fly back to her own family in LA.  Lila really lifts my spirits when she’s around and she pretty singlehandedly helped me get packed and moved out of our apartment in LA, packed and moved out of our rental in Atlanta, and unpacked and settled into our current house, all while I was undergoing intense amounts of craziness.  I can think of no person who I would rather have come and help me slog through all this household and paperwork stuff than her, and she’s graciously said she’s willing to give me some of her time to do that.

Unfortunately, since this is all finally happening so fast, I need to book a ticket for her to get out this weekend and then another return ticket to fly back the following weekend.  All of you my blog friends have been so generous in helping to meet all of our needs, and I can tell you that every single time, it has been such a HUGE gift and helped us to sustain just a little bit longer and a little bit more.

So I am reaching out to you again.  This is the one thing that I think will be the absolutely most helpful to me so that I can be the most help to Kevin as we gear up for the next round.  Would any of you be interested in purchasing or using miles for a flight for Lila from the LA area to Atlanta in the next few days and another one flying from the D.C. area to LA at the beginning of June?  If this is something you think you can help with, please contact Lila directly at plvornbrock@gmail.com to work out the details or if you would like to donate money toward travel, you can contact my sister Sarah at mrswjrt4@hotmail.com as she is handling financial donations.

In addition, for those of you who may be interested in helping out in other ways, I’ll be working on a more precise list in the next few days, but here are some things we could use help with:

a bike rack to borrow for the trip

a bike basket and/or panniers for running errands (I have one of those rack things on the back of my bike for mounting panniers or saddlebags)

a bike lock

an inflatable mattress or inflatable fold out chair for staying in the room (there’s really only a folding chair for me to sit in)

some form of laptop locker for securing valuables to borrow for the trip (I will often be in a shared space)

Grocery Store gift cards to “Giant Food” or “Shoppers Food Warehouse”

Some form of weekly produce box (if any of you know of any good ones online, let me know)

D.C. Metro passes

Trader Joe’s gift cards

Gas cards (for the drive up to D.C… gas costs are calculated to be about $200 each way)

Thank you in advance for ALL of your help, thoughts, prayers, comments, calls, texts, messages.  They mean the world to me and have sustained me already through so much.  I love you all and it’s so wonderful to back in touch with you all again!

Love,

Rachel

I spent Mother’s Day recovering from a cross-country flight by myself with a two and three year old, and then coming down with pneumonia. So that was awesome. And yet I am reminded of a valuable saying. “Be kind, for everyone you know is fighting a hard battle.”

I haven’t written in nearly three months. It’s just been too painful. A lot has happened and I don’t know if I’ll ever be able to catch up with a full update. So maybe you’ll just have to catch the pieces in drips and drabs. But that’s okay.

As I’m writing this, I’m flying back home to Atlanta. I’m flying away from my babies, one of whom is sick with ear and respiratory infections. Do you have any idea how hard it is to leave a sick baby? Even if you know that she is in wonderful, wonderful hands? Yet, I have a sick husband at home who needs me, and I know that God will sustain me and my children through this next chapter.

Next weekend, Kevin and I will fly up to Washington D.C. and spend my 34th (I think) birthday doing tests to get the final go ahead to re-start the TIL therapy trial. If they say yes, we will fly back to Atlanta on the 21st and then return 1-2 weeks later to begin treatment. This will be the hardest battle yet, and I have to bring my game face. Kevin will have been off the vemurafenib for 30 days by then, and his cancer has already come back on his face. The tumors are causing a lot of pain, but oddly, that’s what we hoped for. The cancer has to show progression in order for him to start the trial, but he still has to have normal liver enzymes. So yeah, we’re pretty much praying for more cancer but not too much. So messed up.

Three months ago, one of my best friends died. She died very suddenly in a tragic way. I was the last person to see her alive. She left behind a five year old and a husband, who is now a widower. He is living my worst nightmare.

Erica lived in my neighborhood, just two streets down, and my kids and I hung out with her and her daughter Bella almost every other day. I am mad at God that she is gone. Hell, I’m mad at Erica for being dead. I’m mad that Bella is motherless and that Pedro is widowed. I’m mad that there is so much pain and suffering in the world, and that it doesn’t have to be this way. It wasn’t supposed to be this way. I want to throw rocks at God.

I haven’t been able to sit through the worship portion of church. I simply cannot sing songs about how great God is and “Oh how He loves us.” It just hurts too much, and I start sobbing and I step out before I create an awkward moment for everyone around me. I don’t cry quiet tears, beautifully streaming down my face. My crying is not sweet or noble. I cry ugly. And my ugly crying is loud and sobbing and snotty. But ugly cries are what I have right now.

And yet, God can take it. I throw rock after rock at Him and say “You suck God! Why does my husband have to have cancer? Why did Bella have to lose her mommy? Why did Curt have to die? Why, why, why? I hate you! I’m so mad at you I don’t know if I could ever love you again! How long will this pain go on?”

And I’m reminded that God really can take it. He gives us reminders all throughout His word that human suffering is a part of this story as much as redemption. The psalmist cries out, “How long, oh Lord, will you hide your face from me?” And Job, by the end finally breaks down and says to God the equivalent of “What the fuck God?!” Yes, I said it. And I mean it. How much more can a person take?

I’ve been to the emergency room twice this year. I currently have pneumonia. Last week my husband had to call the paramedics because I couldn’t breathe during a paralyzing panic attack. In January, I got stuck traveling with a three year old for 18 hours and then continued on to D.C., effectively traveling for 24 hours straight before I could sleep, just days after I’d been diagnosed with a respiratory infection and bruised ribs. I got two flat tires in 24 hours. I left my cell phone in D.C. and had to have it fedexed back, only the “snow” in Atlanta delayed the delivery. My husband almost died from liver failure. I will most likely miss my son’s fourth birthday, and very nearly missed my daughter’s second. I had to have an emergency root canal because I’m grinding my teeth at night and destroying all the dental work in the back of my mouth. I still have two cracked crowns and two cracked fillings to get replaced as well. And I missed the followup appointment to finish the root canal. Twice. My friend mailed me a brand new $650 lens of mine that she was trying to sell for me and the post office opened the package, stole the lens, and re-sealed and delivered the crumpled box. Alas, no insurance because who thinks the post office will steal your stuff?

And I’m pretty sure that’s not the half of what’s happened just since the beginning of this year. Oh yeah, there was that time when I ran out of gas on University Avenue, at the foot of Pittsburgh, one of the top ten most dangerous neighborhoods in America. And then after Kevin rescued me, he inadvertently drove off with the key to my car and my phone and didn’t realize I hadn’t followed him until he got home. That was awesome.

And seriously, there have been so many times that I have been just. so. mad at God. I literally have yelled at Him, “Fix it! Make it all better! Are You the creator of the universe or not? Because if You are who I believe You are, then you CAN FIX THIS! It’s not supposed to be like this! FIX IT!”

And when I wait for a reply, I hear silence. And it hurts so much. And I cry. And I cry and I cry and I cry. But then, right there at the bottom, in the midst of my pain and aching and tears, a knock comes at the door. It is a friend come to watch the kids. Or my neighbor come with a plate of meatballs. Or a girlfriend popping in to help me clean up a little and then sit and have a cup of coffee. And God shows up.

Other times, He shows up in the form of ten kisses from my daughter.

Or daffodils that show up two months early, though the ground is still frozen and barren, as if to say, “New life is coming. Trust me.”

God shows up in the form of a beautiful, perfect baby who was not planned by her mother, but was always planned by our Father in heaven. God shows up by redeeming broken families and placing this precious child in the arms of dear dear friends who had beaten down cancer and who now could not bear children of their own. Bless that baby. That sweet baby got me through the month of March.

God showed up at the baseball game that Kevin was well enough to run off to with me, even though we were three innings late, the kids were ready to leave once they’d eaten all their snacks, and it started to rain. God fed our souls that day.

God showed up in the flight attendant who is also a cancer hospice nurse on the side, and my airplane seat mate whose mother is fighting melanoma right now. He showed up in the woman who helped me get my children, three backpacks, and two car seats off the plane before I burst into tears and then out of the blue asked if she could pray for me. I feel certain I would have had a panic attack during our trip last Saturday had sweet Amanda not followed God’s leading to boldly ask, “Can I pray for you? Right now?”

God showed up in the paramedic who brought me oxygen and calmed my breathing last Thursday who was also a Christian and had grown up with missionary parents in Thailand, saving the lives of precious babies who had survived abortions. The paramedic who, despite the fact that her partner was an atheist and she might very well get in trouble with work, offered to pray for me before heading off to their next call.

God showed up in the bald woman on my flight, with the port bumping through her shirt to remind me, “I know.”

That’s the thing about God. Even in the midst of unspeakable pain, God is with us, and He knows how much it hurts. That’s really what Emmanuel is all about. God with us. Always. No matter how many rocks we throw at him or harsh words we cry out in our suffering, He is there, wrapping His arms around us saying, “I know.

I know, sweet child. I know.

This is not the way it was supposed to be. This is never the way it was supposed to be.

And yet, though it is impossible for you to make sense of right now, I work all things out for good. You will see.

No matter what, I will be with you and you will make it through.

It hurts so much, I know.

It makes no sense, I know.

You are so angry, I know.

And yet I came down and lived with you so I can say to you now, I know. I know, my child, I know.

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Though I have not had any panic attacks for the past few days, for the week and a half prior, I’d been suffering panic attacks of increasing duration, intensity, and frequency that culminated in the 911 call. It has been incredibly exhausting, scary, and frankly, embarrassing. But I know that there are many people who struggle with anxiety on a regular basis, and my heart breaks for them now. I have never struggled with anxiety before, at least nothing like this. In my reading about what panic attacks are and what they do to your body, I found peace in explanation of the extreme fatigue that they cause to a person. The fatigue I was experiencing after the first few were frankly feeding into my increasing anxiety because I was getting to a point where I couldn’t function and was even more fearful of that fact. Once I understood that the fatigue came from the attacks, I could rest and receive the peace and sleep that my body so desperately needed. Another thing that I came across again and again as a way to treat panic attacks and anxiety is to write. To write about anything and everything that comes into my head. And perhaps, since I took such a long break from sharing on this blog, that may be one of the reasons things have gotten so bottled up to this point. So I will try to write more though it may often be for no one but myself. I like writing on a blog though instead of just a private journal for whatever reason. So that’s what I will continue to do. Please don’t be offended if I use a word that is troubling or suggest an idea that might challenge theology. I am so often comforted by the stories of great theologians who went through intense periods of darkness, doubts and questioning. Again, I am reminded that God, who is ever unchanging, can take whatever crap I throw out at him. And so dear friends, thank you for having me back. Please do keep in touch as I will try to do as well. I have missed sharing with you all and will need each and every one of you for the next chapter in our journey.