I have started writing this post at least 10 times and then I can’t finish it.  God, this is so hard to write.  Lord, give me the strength to write humbly, wisely, unselfishly, amen.

First of all, let me give you a quick update on how Kevin has been doing.  Interferon has been getting harder and harder for both Kevin and I.  He has been pushing himself and has made it to work most days, although last Friday, he had to come home shortly after going in, because he was just feeling too sick.  He’s been struggling with nausea and indigestion, but not the way I’d imagined it.  It’s not like he’s just throwing up all the time, like on the first day.  He just has that yucky kind of “I need to throw up” feeling and it’s persistent throughout the day.  Sometimes the side effect medicines help, but it really only keeps the feelings at bay.  He’s got a general feeling of yuckiness most of the time.  That has led to more exhaustion as well, simply because the schedule of going to labs, then to the office for a few hours, then back in for treatment is really a lot.

Though I am not struggling in the physical way that he is, we are both each going through our own kinds of personal hell right now.  For him, it is truly a battle with his body, and he is fighting so hard.  I am so proud of him.  Everyday, heck every hour sometimes, he asks God for more courage, more strength, and God is faithful and gets him through.  My battle is more emotional and spiritual.  I focus on trying to make it through the day, tending to little children who still don’t feel well, various large household issues, financial issues, and trying to figure out ways to make my husband feel more comfortable.

The feeling of helplessness in that area is probably the most difficult thing I’m dealing with.  Well, one other thing is pretty damn difficult.  You see, cancer has never made Kevin sick.  He had all of the melanoma that they could find removed surgically, and the sickness that he has had has all been recovery from surgeries or side effects from treatments that are intended to make him “better”.  We both never realized how hard it would be to watch him be so sick from something that we were doing to him on purpose. Let’s just say that the perversity of the whole thing is driving me batty.  At the end of the day, we are both exhausted, just in different ways.  And at the end of just about every day I feel like I cannot bear it any longer.

I know that I haven’t written for something like what, two weeks?  I can’t avoid talking about it any longer, and I can’t keep writing and re-writing, trying to find the most perfect, most eloquent ways to talk about this, so here goes.  Some of the first people we met when we moved into our house were a couple named Curt and Maya.  Curt’s mom, Tammy lives two houses down from us, and Curt and Maya live at the other end of the street.  So needless to say, we saw them a lot.  Kevin really bonded with Curt over them both having been raised by single moms, both being only children, even their love of poker.  And Maya and I have grown close over these past few months through all kinds of shared experiences from things as little as trips together to Trader Joe’s or just long talks into the evening over coffee.  On the first day of Kevin’s interferon treatment, Maya’s uncle passed away.  Curt was really struggling because this man had been like a father to him.  He ended up on my porch where we ended up talking some and I prayed with him.  I didn’t know what to say or do, as there really isn’t much of anything that one can really say to be comforting during a time like that.  I pulled out one of my favorite scripture cards, Isaiah 41:13…

For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee.

I made a mental note to ask Miss Rachel for her to make me another one, because honestly I just loved reading it in her handwriting (See how I’m still thinking about my own needs?).  Then I ran inside to print out my favorite prayer, the Prayer of St. Francis De Sales.  It’s a beautiful prayer that has gotten me through so much in the past 15 years of my life.  I have a lovely print of it that was given to me by an old friend and I’ve literally had it in a frame for the past 15 years.  For some reason, I couldn’t get my printer to work, and so, somewhat unwillingly, I pulled the card out from the frame and brought it down to give to Curt.  He sat and read it and with tears streaming down his face told me “Thank you.  Thank you so much.  I need to hear this.  I will pray this every day.”  And then I had to go in to take care of Kevin and so I said goodbye.

Two weeks later, Curt died.  He had a brain aneurysm that burst very suddenly.  A few hours after he arrived at the hospital, he was declared brain dead and his mother had to make the decision to take him off of life support.  All that weekend long, I couldn’t stop thinking about Curt.  He and his whole family had become a part of the little life and community that we had been creating for ourselves in our neighborhood.  I was in such shock.  Curt was our neighbor and friend.  He high fived my son and held my daughter.  We shared meals together.  Kevin and Curt played poker together.  Maya and I grocery shopped and gabbed together.

He and Maya were planning on getting married and they had so often talked of their plans and dreams for their future together.  They talked about a house up on Oakhill (one street over) that they were maybe going to rent and attempt to buy.  Maya talked of getting her drivers license and getting back into college.  Curt told Kevin about the ring he was saving up to buy.  Curt was such a wonderful young man.  I loved his spirit, his sweetness, the way he would get so excited about the littlest things and the positive outlook he always had on life.

And in the midst of Curt dying, Kevin and I were struggling minute by minute to make it through. The whole time that we have been dealing with this cancer, even from the very first diagnosis, neither one of us has wasted much time questioning God.  We’ve never asked why us or even why now.  I don’t really know why.  It’s honestly not because we are just so spiritually mature or our faith is so stonger or anything like that.  It just hadn’t really crossed our minds or been some difficult hurdle for us to get over.  I know that it is for some people, and trust me we’ve had lots of other challenges in our faith these past seven months (God, has it really been seven months?) but for whatever reason, questioning God about Kevin’s cancer wasn’t something that we’d struggled with.

But as soon as I heard about Curt, I immediately went there.  And quite honestly, I’ve stayed there.  I can’t get over it.  I ask God, “Why?  Why Curt?  There are so many other guys that are total losers… why him?  He was such a good guy!”  Notice I don’t seem to have any trouble suggesting that he should have “chosen” someone else.  Someone who wasn’t a nice guy, someone who wasn’t our friend.  Like I said, we still have plenty of our own sinful challenges.  Also, I find myself asking, even more selfishly, “Why this week, God?  This really isn’t a good time for us.  We are in the middle of this horrible time, and we have nothing left to give for anyone.  No way to be there for Tammy or for Maya.  Nothing to offer in the way of time, support, money, nothing.  Plus, God, we are already feeling so broken, why do you have to kick us when we are down?  We have been praising Your name, counting our blessings, trusting You in the midst of all of this.  We have trusted You through transmissions that die on minivans three days after purchasing them.  We have trusted you through squirrels in our attics, heaters that break down, sick children, sick husbands, carpenter bees, for goodness sake! We have trusted You in moving across the country without a job.  We’ve trusted You and followed You and leaned on You with our daughter in the NICU, two giant insurance battles, six months of colic, houses we tried to buy and lost out on.  We trusted that You had plans in all of this, and You have been faithful!  We see Yoru hand all over our life, in the home we have now, in the beautiful, healthy children, even in the beautiful mess of our cancer journey.  But seriously God, how do I trust You in this?  When You take the life of a dear friend, so senselessly?  When You leave his partner without her soulmate?  When you make a mother bury her only son?  Why now?  We cannot bear it any longer.  I cannot bear it any. longer.  I am selfish, and at this moment, I have nothing left to think of or care for others.  God, I am worn out and weary and at the end of my rope.”

I have found myself crying out to God so much these last two weeks.  And honestly, selfishly, I wanted my prayer back.  I wanted to read it on that beautifully printed card, to see if the words that had given me comfort so many times, when my own uncle died so suddenly, when Kevin’s mother passed away, when we encountered so many challenges and trials that we honestly felt we could not bear it any longer.

But the morning after Curt died, when I spoke with Maya and prayed as best I could through choking tears and a selfish heart (After all, it was her soulmate who had died, not mine) I gave Maya a bible, and asked her if she had the prayer that I’d given to Curt.  She pulled it, worn and folded, out of her back pocket.  She said it’s the only thing that’s made any sense, and that she reads it over and over.  I knew that my prayer was exactly where it should be.  Someday, I may pull the text of the prayer off the internet and type it up in a lovely font and put it up in a frame again.  But for now, I simply pray these words, again and again… For Curt who will be so sorely missed by so many people, for Maya, for his mother Tammy, for myself, when this cuts so close to home as I constantly flirt with the thoughts that I too, may lose the love of my life.  I say this prayer.

Be at Peace

Do not fear the changes of life, rather look to them with full hope as they arise.

God, whose very own you are will deliver you from out of them.

He has kept you hitherto, and He will lead you safely through all things;

and when you cannot stand it, God will bury you in his arms.

Do not fear what may happen tomorrow;

the same everlasting Father who cares for you today will take care of you then and everyday.

He will either shield you from suffering, or will give you unfailing strength to bear it.

Be at peace,

and put aside all anxious thoughts and imagination.

St. Francis de Sales 1567-1622

We spent the weekend pretty much hanging out at home, and if it weren’t for the fact that my love spent most of it in bed upstairs, struggling with cancer treatment side effects, I would have called it a perfect weekend!

I love our house and I love our neighborhood, and I love nothing better to just hang out.  The weather was perfect, low 70s with a light breeze.  Since the pollen count had finally come down enough, we spent most of our time enjoying that weather, relaxing on the front porch.  I cannot tell you how much I love this gigantic front porch of ours.  This is part of the joy of buying a hundred year old house… huge front porches.

My dad built this awesome picnic table for us at one end, and we eat most of our meals out there.

I love this little clip-on chair I got for Evie at the South Atlanta Marketplace for just six dollars!  It was originally covered in an 80s navy and country blue plaid, but I re-covered it using some fabric from a painter’s drop cloth and a staple gun!  Even I am pleasantly surprised at my efforts at being crafty.  It definitely gets a ton of use, and is now a little easier on the eyes!

On the other end of the porch, my dad hung a swing that he and my mom gave to us.  I still want to sand and paint it, and I’d like to add a nice outdoor rug to ground the sitting area, but other than that, this is what our porch looks like most days.

My dad installed an awesome baby gate along the front steps, so the kids can really have a little freedom to explore, but of course Jude has figured out how to open it, and chose to spend lot’s of time “gardening” in the front yard this weekend.

We don’t have any plants there yet, but Jude is enjoying “preparing” the soil for us.

Evie decided she would get in on the action too.  She turned 15 months on April 1st, and just really started walking last week.  She was a little late, but boy is she making up for lost time now.  I’m pretty sure she’s going to be full on running by the end of the month.

This is the view down our street to the West… Someday I’d love it if the city decided to come fix this sidewalk… ah the joys of living in an under-resourced neighborhood.

And here is the view to the East

Jude decided he wanted to explore the overgrown front yard of the vacant house next door, and Grammy Lila taught him how to blow dandelion seeds

Showing sister the “pretty flowers” that he found… Oh, I love the bond these two have!

Daddy felt well enough to hang out with us a little Saturday evening.  There’s nothing photographically so great about this next picture, but I just love the story that it tells… the kids are so happy to be hanging out with their Daddy, and I love how little Evie is marching her way over to sit in Mommy’s lap.

Kevin caught some pictures of me being silly with the kiddos… I’m always behind the camera, so it was nice to have some with me in them!

I am oh so incredibly grateful that we have been able to have Lila out here for this time.  She’s truly just been running the house and showering the kids with attention, and they just love it.  I so love that they have been adopted into her family as the grandbabies!

I got in kind of a funk after Thursday, it was kind of a rough day.  So sorry for not getting this update sooner.  Since Kevin had been getting sick immediately after treatment, and then feeling better 3-4 hours later, we thought we’d try having him go in in the afternoon, so he could at least have a good half day of work at the office.  He went in Thursday morning to the office, and I picked him up to take him to treatment at 1:30.  It really did seem like a good idea at the time.

Up to this point, it had taken about an hour to get his labs done, and then another 2 hours to get the infusions completed, so we thought we’d be home by dinner, he’d eat, and then go to bed early to sleep things off.  Once we got there, they took him in to draw blood to send off for labs.  An hour came and went, and then another hour, and we asked why nothing was happening.  Finally found out that his labs were a little low and they were having to re-test everything manually.  Another hour went by, and at 4:30, we found out that his white blood cell count was low, as well as some other numbers, and that they were waiting to get approval to see if he would still able to receive his infusion.

Finally, it was explained to us that his white blood count was critically low, but that it was just barely high enough to receive the infusion, so they went ahead and started it up.  The nurse had been really busy, and her personality wasn’t such that she had ever been very communicative to begin with, so we went home that night pretty confused, and not really knowing whether we should be freaking out or not.  Based on what I understood, his white counts had plummeted to the point that he basically had no immune system.  And this had happened in a day.  Add to this that we have two kiddos at home who are coughing, runny nose, little germ factories at the moment.

After getting Kevin settled in and the kids to bed, Lila and I went out to buy some lysol, hand sanitizer, and other random disinfecting gear.  I tried to focus on the task of keeping the house as clean and germ free as possible instead of worrying about what this would mean for Kevin, both if he were to get an infection (most likely end up in the hospital) or if his counts were to stay low (have to either delay or stop treatment).  Thankfully, like I said, I had house disinfecting and sick children to distract me.

I begged Kevin to work from home the next day to avoid groups of people and their germs, and wondered if I was going to find myself turning into the crazy germ-phobic mama.  I also wondered if we were going to have to enter a season of total isolation.  I’d already been struggling enough with the isolation I’d been feeling.  The next day, he was able to go in first thing in the morning to get labs done, and then go in later in the day for his infusion.  Wish someone had told us earlier he could do that!  He was glad to be able to have a few hours where he felt relatively well to do some work.

By the afternoon, he got a call that his counts, while still low, had gone up substantially.  This was good news, but the logic of the whole thing made no sense to us.  It seemed, based on my understanding of how this drug works, that his white blood counts would go very high, seeing as how the drug was tricking the body into thinking it was fighting an infection.  Plus, if the drug had made his counts go down so much, why would they have come up the next day, since he’d had a treatment anyway?  I guess the best thing we could figure out is that everybody responds differently, and how it all works isn’t very well understood.  Arghh… very frustrating.

Anyway, we made it through the second day of treatment relatively uneventfully, and Kevin spent most of the weekend sleeping and resting.  Unfortunately, he wasn’t really feeling much better by the end of the weekend, which wasn’t too encouraging.  During radiation, he was always really dragging by Friday, but would feel almost 100% again by Sunday.  We know it’s a totally different type of treatment, but it was still a bummer, especially since Kevin’s still doing his best to figure out ways to keep working during all of this.  So basically, we are back again to really taking it a day at a time, with no real sense of predictability.  But we are doing our best, and keep walking by faith.