Red JellO

You guys!

At this very moment, I have zero pain!

I have been hurting for two years, at least!

But today, right now, in this moment I have no pain!

It’s like a miracle!

It *is* a miracle.

I know it might be medicine they gave me in the night, or because I am lying still without bothering my surgery incisions or staples. I know it will hurt later when I get to get up later and try waking around. I know this battle isn’t entirely over just yet. I get that. I really do.

But for a moment, even just a small moment, I woke up at 415am this morning to experience the miracle of no pain!

I want to wake up Nathan and tell him, but I am trying to wait so he can sleep. I wanted to ring the nurse and tell her, but my ears are off charging, so I would to be able to understand her.. So I had to write it!

The nurse came in then, and cried with me, but also warned me to still pace myself today because my body is weak and tired and it will hurt again after I am allowed to start walking. But what a miracle that is, to start walking!

Don’t get any big ideas, Nathan says.

It’s just jello, I say.

I haven’t eaten in two days, and not much in four days.

I am a girl who needs some jello.

20140718-051315-18795211.jpg

He teases me, because usually I don’t like jello. His mom makes these amazing and gorgeous jello salads, and I don’t eat them. But it’s a texture thing for me, and growing up the only time we had jello was when my mom served it to us as a hot broth when we were sick. Today, then I am getting some ribbing from even myself because I was thinking maybe to ask her for a simple salad to practice at, like red jello with bananas or something. Or maybe I am still too scared!

The nurse says she is coming back at 6 to take my catheter out, and then an hour after that I can walk by myself to the bathroom, and an hour after that, I can take a shower! So she said to still use my morphine even though I think I am such a superstar. It made me laugh! Everyone has been so good and nice, and I am grateful for their good care of me.

We will share better updates after the doctor come today and we actually know more details.

Thanks, though, for all the support!

And chocolate! Look what Rachel brought me!

20140718-051636-18996125.jpg

Post-Surgery

20140718-001038-638653.jpg

This is Nathan handling the typing today.

Emily wants to say that the surgery lasted longer than expected, and they were not able to do it laparoscopically. But, as promised in the blessings, they were able to gather what they took out, so the incisions were not as bad as they has feared. However, after surgery the doctor had to leave and everything was sent to pathology, so we don’t have answers yet, and hopefully we will learn more tomorrow.

Many thanks to the people feeding my husband and children. (I second that, says Nathan.) I am still on liquids, but hopefully tomorrow I will be able to sit in a chair.

Even though I am still sore, and obviously the incision hurts, but I already feel better having those tumors out. Also, as you can see, we are still adorable. (She made me write that.)

Surgery

Wednesday, 1030pm

Don’t worry. This is not an enema blog.

But there is something special about the man you have been married to for less than two years when he is willing to help with such an adventure. Without complaint, with simple compassion, and much gentleness, it is moments like this that are make-it or break-it, and I know I chose the exact right husband for me.

It’s not just the willingness to do the dirty work.

It’s the devotion and love that goes beyond, like sitting outside the bathroom to sing me songs that keep me calm and unafraid and as comfortable as is possible.

Because I am afraid, though I am trying hard not to be, and it makes me cry. It’s not just this piece of things, which is plenty unpleasant, as much as it is all of it together and just not knowing. I am tearful today, either because surgery is finally here or because of the extra pain since I cannot have medicine until after surgery. He is patient with me, holds me, lets me cry, prays with me, and gives me blessings. We are taking this hour by hour now.

Wednesday at Midnight

My body is calm and clean and exhausted. I am beyond tired, but the surgery looms over me with great concern. There is no turning back now, and to change my mind is to lose my life.

It’s going to hurt, I cry.

It will hurt, and I am so sorry. But I will hold your hand, he says.

This is not a cancer story. It is a love story. That’s what I want people to know.

I look at him, with a calm face, both of us with hot tears falling.

I just want to say this once, that no matter what happens, a little pain is worth even an extra moment with you in mortality.

He cries, too, and holds me.

We waited so long to find each other, and know we are a miracle.

He looks me in the eye, with such softness, and says, I just want to say this once, that no matter what happens, we are sealed together for all eternity, and nothing changes that.

We cling to each other, and we sing All is Well.

Why should we mourn or think our lot is hard?
‘Tis not so; all is right.
Why should we think to earn a great reward
If we now shun the fight?
Gird up your loins; fresh courage take.
Our God will never us forsake;
And soon we’ll have this tale to tell-
All is well! All is well!

Thursday, 530am.

I wake.

Nathan is still sleeping.

I have been dreaming that my cancer cells were Hamas rockets, and we were fighting them on our dragons as part of the Iron Dome system.

So many people keep backing out of the Israel trip that they have cancelled it again, and I am so disappointed. I am relieved it wasn’t cancelled because of cancer, but I am so sad. Nathan is disappointed because he had hoped that would be my big healing goal, my recovery trip just as I had gone there to bury my father, and then again my mother.

We will go another time, I say.

Maybe another place.

I have five more hours to go, we think, before surgery. I am already hungry, and don’t know how the final hours will pass. I haven’t been hungry for days, but now that I am not allowed to eat, I think I am starving.

I feel the pains in my belly, and want the cancer out.

Even if surgery is going to hurt, too.

I cannot sleep, so I get up to go to the bathroom and brush my teeth. That’s when I rediscover my new short pixie hair. It’s looking pretty spunky after sleeping on it all night.

20140717-054008-20408335.jpg

I go back to bed to lay by Nathan while I still can. I stretch out on my stomach, and wonder however will I sleep on my back for two or four or six weeks, and how much will it hurt my head from where my implants are? I lay how I always do, squirmed up next to Nathan with my feet tangled in his. We still hold hands in our sleep.

I really love him a lot.

I try not to wake him when I cry.

6am

I still can’t sleep, so I wake him instead with the light of my phone as I start to type.

There is an email from my mom’s best friend, Jo. She is checking on me as my own mother would. I am grateful for her, and it makes me cry.

Surgery is the kind of thing when a girl really misses her parents extra much.

My brother isn’t coming, his message says. He had a coworker pass away unexpectedly, and so he can’t take off work. It has been very hard and sad for them there. He asks if I will be meeting him this weekend in Siloam Springs to visit my father’s cemetery (it was our father’s birthday this week). I tell him I will still be in the hospital. Another time, he says. Then his wife texts Nathan to say she can’t come because we didn’t tell her sooner, and Nathan and I agree cancer is very unexpected and inconvenient.

This was the weekend Nathan and I were supposed to be on an all expenses paid no-kids retreat.

I hate cancer.

It’s so lame.

We reassure my brother and his wife that we will call soon as we know anything, and text his sisters the same.

I really miss my mom.

When I think the grief might swallow me, Nathan squeezes my hand and I am better.

I am grateful, I remind myself, for temple blessings that make my parents so accessible to me through the veil, and I am confident, I remind myself, that they will be present and ministering to me.

Just then my friend Rose from Tulsa texts me. She is staying with the kids some while I am in the hospital, during the times Nathan’s parents are resting while Nathan is with me. I am grateful for her help and service. She is one who was supposed to get to go to Israel, and now can’t because other people cancelled. I am sad about it, but grateful for her friendship. I don’t think I have gotten to hug her up since Passover Seder.

7am

Nathan’s alarm goes off, and we just keep laying here, clinging to one another until we really must be up and getting ready.

It’s time, he says.

Let’s do this, I say.

715am

Our two hour illusion of normal begins. Nathan helps five shower while I sing with the toddler. Then I give her a bath, which I have not been able to do myself for weeks, and which is still too much today, and I wince with pain, but know it is the last time in awhile that I will have the chance. Besides, she and I need all the bonding and nurturing we can get, and her smile and giggles make me strong. I get her dressed. I brush five’s adorable curls, and take some relief from knowing my children and house are as clean as I can do.

Five tells Nathan that “someone – I don’t know who – but someone maybe poured a little tiny bit of baby oil in the toilet. But that someone should not do that again.” We laugh and laugh!

8am

My brother sends me a praying-for-you text, and I am overwhelmed by the goodness of what the Savior has done for our family. I am so grateful.

The kids and I play school while Nathan makes them and himself breakfast, as if it is any other day teaching them to read and write and spell and count.

20140717-093535-34535822.jpg

While Five finishes his alphabet, the toddler and I change the clothes on her baby doll, and snuggle, and play.

20140717-093622-34582758.jpg

Five spills his chocolate soy milk and tells the toddler, “You need to understand I have spilled my milk. My mom and dad have helped me clean it up, and they will get me more chocolate milk to make me feel better. And I know they love me. And I say these things in the name of Jesus Christ, Amen.”

950am

When we finish playing school, I give the kids my testimony. I tell them I know they are children of Heavenly Parents, that Heavenly Father knows them and loved them, that the Savior is real and the atonement is powerful, and that the Holy Spirit instructs and corrects and guides and comforts. I tell them the priesthood really has been restored to the Earth, and that because of this family are eternal. I tell them that just like we will live again because of the resurrection, our temple sealings mean that we will live again as a family. I tell them God has always used prophets, that Joseph Smith was a prophet and real a man as any prophet ever was, and that our prophet today is Thomas S. Monson. I tell them that I love the Savior, and am so grateful He rescued me, and that if I can be rescued then anyone can, and that what He did for us was amazing. I tell them that prayer works, and that I am made strong by the prayers of all kinds of people all over the world, and that knowing people pray makes me very happy.

We gather to pray as a family, and Nathan gives me one last blessing.

He wears his priesthood clothes and the purple tie from our wedding reception. Because he loves me.

20140717-094745-35265370.jpg

10am

We gather my things, and all of us load up in the car. These kids have been through too much, and had too many parents leave them too many times for me to just disappear. I want them – I need them – to go with us to drop me off at the hospital, to see where I am going, to watch me walk in and know I am ok, to believe us when we tell them the grandparents will bring them for a visit.

We sing Spirit of God on the way, and I am filled with calm. I remember the words of my blessing this morning, about being gifted to endure with joy and peace.

I tell the kids goodbye, kissing them and hugging them, and tickling them as I pull away. They smile and laugh, ready for their day and not worried at all. It is perfect.

I want to cry when Nathan hugs me goodbye, but I don’t dare, because I want the kids to see me smiling. Not in a fake way, and we have talked about how this is hard and scary. But I want them to see my faith and my confidence, and to know that no matter what everything is going to be okay.

1035am

I am checked in at the hospital, and checked in on the surgery floor.

I wait.

I am not excited or thrilled by any means, but I am okay. In this moment, I am calm and at peace. It just is. I hurt, and want it out. It will be hard, but I am not really alone.

Let’s do this, I say, to myself this time.

1115am

I have been checked in to surgery, met my nurses and anesthesiologist, and discovered no interpreter. The anesthesiologist has instructions to put my ears on soon as surgery is finished. After three pokes, my IV is secure, and it’s time to wait. Again.

20140717-111654-40614062.jpg

I read the family proclamation while I wait, because now I have family, on both sides of the veil, and now it matters. I review as long as I can, so that the memorized words can float in my head as I sleep.

Then, when it is almost time, Nathan sings me a lullaby.

20140717-112651-41211738.jpg

1140

There is a big debate about my cochlear implant processors, and who is going to take them off when and where they will be put and who will put them back on. My anesthesiologist tells the surgeon that if he messes them up, she will kill them. Then she tells me I a cheap date for being a Mormon, and that it makes her job easy. She is so funny!

Then she hooks a heater up to my gown! It’s so cool! Well, warm.

20140717-114251-42171326.jpg

Noon
Game on!

5:15 p.m.
This is Nathan. Emily is out of surgery and sleeping. We have not yet met with the doctors for the update.

Surprise from Marama Bayles

Look! She brought us stuff to make gluten free cookies for Nathan and the kids, after seeing us tease about it on Facebook!

And a special cup with lid and straw for me to use in the hospital!

20140716-202816-73696774.jpg

And then THIS! It’s marble from the Oklahoma City temple! I cried!

20140716-202908-73748802.jpg

Hairs

I thought I was ready, that it was already decided, and that it was no big deal. I don’t think of myself as very vain, and if anything could do better to make more of an effort at girlying up most days. I joked to Nathan that I would text him if I panicked, leaving him at home to work while I left on my own to make my two errands.

The hospital was first, for my daily blood offering. My arms and hands are already starting to bruise up from all the needle pricks, and I am grateful I am not a whimp like Nathan. Seriously, he is a needle whimp. He is one who will pass out even if it is me getting a needle, so it’s a good thing I am independent and can do lots of these pieces of my medical treatments on my own. It works out perfectly, because we get one on one time alone separately to decompress and process, and then support each other well with our closeness in other areas of our lives that don’t involve needles.

My cell counts are getting worse, which makes sense with what we know is going on. I am anemic already, so they are going to check my bone marrow while I am in the hospital anyway. We really need this surgery to happen to get all the answers, but I am grateful to know now about the anemia because that explains in part why I can barely stay awake sometimes. I am so tired!

I filled out my cancer clinical trial paperwork best I could, but some answers I won’t know until after surgery, so I can’t turn it in yet. But I did get it done.

When I finished, I knew it was time for the next step, and really thought I was ready. I drove to Wal-mart of all places, because they have helped us so many times with emergency foster care kid no-appointment haircuts. I walked in, thinking I was just fine, and marched right up to the desk to ask for my haircut.

Except soon as the sweet girls came to help me, it all started pouring out of me, all about cancer and chemo and losing my hair, and needing to get it cut today before surgery. I cried and cried!

They set me up right away, gave me hugs, and even went through the store to buy me a box of kleenexes!

While they did that, I sent emergency texts to two of my new friends from our new ward, Rachel and Sarah-Jayne. One was just leaving the dentist, and the other got a neighbor to stay with her kids, and both of them showed up right away, even though they had no notice or warning because I was too stubborn to ask for help ahead of time.

Neither of them laughed at me or shamed me. I felt so silly for panicking, but I had just started crying and couldn’t stop. They sat with me the whole time I got my hair cut, even though to get a haircut I have to take my cochlear implant processors off and so cannot hear anything. I was surprised by how many basic signs they did know, and both could finger spell. New friends indeed!

The ladies cutting my hair were so sweet. They quickly decided I needed a pixie, so that I could still be “cute” until my hair came out. A pixie would be a cut easy to care for after surgery, they said, but would still give me enough hair to feel like I had some.

20140716-142458.jpg

All the ladies were so sweet to me, giving me kleenexes and letting me cry, but also cheering me up and just staying there with me. One of the girls doing my hair has already fought ovarian cancer! So she really understood, and the other girl has seen a lot of cancer in her family. They wrote notes with me on paper, back and forth during my haircut, so I wasn’t even left out of the girl talk. It was amazing, and to feel such love and comfort made me cry even more!

I cried again when one of the girl swept my hair away. It wasn’t that my hair was so amazing and I was sad to see it go, so much as it is a lot to process in a very short amount of time. When she swept away my hair, as if it didn’t belong to me anymore, it just pressed my grief button. It was like when DHS had to take away our foster babies because of my cancer, which was just like when my pregnancies ended in miscarriages, which was just like when my mom was killed last year, which was just like when my father lost his battle to cancer. She swept away my hair, and it felt like all of it being taken away from me all over again, and the hot tears fell.

Those were my emotions, but all the girls were so patient and sweet! They did not get frustrated with me, and really took their time. They even offered to color my hair purple for me! I laughed so hard! I almost did, but in the end declined because that was not my journey for today. In the end, they did not even charge me for my haircut, and told me to come back any time I need it just washed or when it is time to shave my head because chemo has begun. They were so funny, and really helpful, truly angels to me today.

20140716-143227.jpg

I was grateful for the ladies who did such a good job with my hair, and for their kindness to me. I was grateful to my two new friends who sacrificed to come out just so I could be a crybaby. I was grateful when I came home to Nathan’s dad dropping off the pre-surgery supplies I needed, and to see him stay to work in our yard. I was grateful for Nathan’s violin lessons and practicing that soothe my soul that can’t stop crying today. Who gets a violin serenade everyday while fighting cancer? It’s a powerful gift, and I am grateful.

Also, my new hair is super fun:

20140716-143509.jpg

20140716-143517.jpg

And now I am pretty sure I will sleep until tomorrow.

My doctor called to check on me this afternoon, and I am glad they are taking good care if me and that we are ready to get this battle started.

That’s why I need a nap, because I have a fight to rest up for, even if I am “cute as a bumblebee” like five said.