Easter Update

I feel like updating the blog becomes more and more difficult as the weeks pass, with so many twists and turns and emotional crests and valleys, but I'll try my best to catch you up on things as they are. 

Here's the biggest news: Ian has made some serious progress in the digestion department. Over the past few weeks he's moved from clear broth to mashed potatoes to chunky soups to fish tacos. He is still on IV nutrition, though. Some days he doesn't feel like eating anything. They took his stomach pump out about a week ago, and avoiding too much detail I'll just say he's digesting food successfully.  All of this is major progress! It is progress on a superficial level in some ways though, because the deeper disease of leukemia continues to rage. He still has no immune system and can't make any blood for himself. We still need that big fat miracle. 

Ian is continuing to walk laps as often as possible, slowly building his strength back up. Very, very slowly, but he's working on it. Baby steps toward coming home. They even said he might be able to get blood transfusions here in Sunnyvale, making the home care much easier. We are still at least a couple weeks away from that, though. 

They started Ian on a new steroid right around the time of my last post, and it had the wondrous effect of taking away his constantly miserable fevers. It was like Ian was coming back to life again! With him eating and walking and being fever-free, there was a Sunday exactly 2 weeks ago that I felt like I had my husband back again for the first time in months. After so many weeks of little connection and what seemed like imminent death, I had unconsciously cut some of the strings of my heart to Ian. I had prepared myself to be a single mom. I had protected myself by bracing for the worst. 

With Ian coming back to life again, however, these walls protecting my heart started to come down. I started to allow myself to feel hope against all odds for Ian's healing. That Sunday we talked about taking the girls fishing and kayaking and traveling and watching them grow up together.  I gave myself permission to ignore the diagnosis and trust God just might work a miracle and actually bring us through this. It felt momentous. 

I was so excited to bring the girls the next day to see Ian full of life again, but sadly we arrived to a very different picture. He was greenish and feverish and sleepy and totally out of it. We spent the day there, but it was a rough visit. As we drove home that night, something in me broke. I wept and wept, and the girls wailed right along with me. It was so painful to finally feel such hope and connection again only to have it ripped away the very next day. 

Later the hospital called and told me they found a new blood infection and his blood pressure was extremely low. They said I should come, because if the antibiotics didn't work then he would pass very quickly. We spent the next few days close by, and of course he sailed right through it. Ian assured me not to worry, that he'd get through it no problem. He is so full of steady hope, it is quite astonishing. 

At first I defaulted back into numbness. How do you go from such high hopes to being told your husband might die in a matter of hours? How do you even allow yourself to feel the weight of it? I couldn't. So I became a bystander again, but I'd just experienced such connection with Ian that I couldn't possibly stay numb for long.

In a conversation with him I soon broke again, and I've felt deeply broken ever since. I cry at the drop of a hat. I'm trying to keep hold of the hope, to be faithfully married to Ian in sickness and in health, to keep those strings of attachment sewing my heart to his no matter how piercingly painful. I'm trying not to grow numb again, but the cost is high. It's so painful I sometimes want to scream and pound my fists in anger. I feel so much emotion and stress and frustration and grief pounding through my veins daily. It's been really, really hard. 

Part of this has been due to my severe allergy to our cat. At first he didn't effect me, but over the months his dander has built up in our wall-to-wall carpet and I'm suffering constant asthma attacks at home. I have to take my inhaler day and night in order to breathe and I'm up much of the night wheezing and coughing. I've come to the conclusion we need to find a new home for him. Please pray for a perfect fit - ideally with someone who would be happy to let Asha visit him regularly. 

This is heartbreaking for so many reasons. He's an amazing kitty and Asha adores him. She coos starry-eyed over every part of his furry body. He loves to be swaddled in a blanket and cuddled while she reads for hours with him in the papasan chair. He is perfect therapy for her, but perfect torment for me. Our home has become a torture chamber and I feel like I'm becoming a monster from too little sleep and too little oxygen. 

The girls also came down with a bug this week, with burning fevers and runny noses and sore throats. Thankfully it only lasted a couple days, but this means it will be two weeks before any of us can visit Ian. He's been having a headache from the contrast used in a recent CT scan and is still riding the fever waves and so rarely has the energy to talk or text. If we do talk, his voice is so weak I have a difficult time understanding him. This breaks my heart, feeling the distance grow wider and wider as I'm unable to track with him. Even if I get updates from his nurses, it's not the same if I can't be there by his side and observe for myself. It's been so, so hard. 

I feel like I'm in a new temperature of furnace, a deeper level of breaking and remaking. I'm being brought to the end of myself again and again, in deeper ways than ever. In all these very hard things, I know I have to let go and trust. I have to trust all these details are in God's hands. All of this tragedy isn't random or purposeless. I must believe that even though it's tearing me apart, it is deeply healthy and human and healing to weep and mourn and feel this pain. I'm trying to lean into it, but not be overcome by it. It's another kind of tightrope walk. 

My birthday was a week ago, and to be honest it was a pretty sad and lonely day. I winced at the echos of "happy" birthday. Today is Easter, and similarly I entered church this morning full of deep sadness and grief. Again, I winced at the joyful calls of "Happy Easter!" and "He is Risen!" I wasn't happy and I couldn't enter into the joy of resurrection while being tumbled under the waves of sadness. 

Something beautiful happened today, though. I couldn't pull myself out, but with each wave of grief there was a brother or sister there to hug me and listen to me sob and share my sorrows. Over and over, I was cared for and loved on and provided for by people from our church being the hands and heart of Jesus to me. I didn't have to cook one meal, yet the kids ate and played blissfully with friends pretty much nonstop, morning to night. We drove to the service this morning in tears, feeling desperately overwhelmed by sadness and frustration. We drove home tonight filled with calm joy and thankful hearts. I feel renewed and refreshed on so many levels. 

I think I may have entered into the meaning of Easter in a new way this year.  We believe the highest expression of Divine love was communicated to us on a bloody cross. To truly love deeply is to suffer. I can't love Ian and not be torn apart inside. To choose love is to choose to be broken. But like the cross, the brokenness of true love isn't weakness or dysfunction. It is the deepest power and healing. This kind of love that suffers is so much stronger than military might. It is soul force, it is the stuff that actually transforms hearts and relationships and communities and nations. It is the truest kind of power behind the universe that heros like Gandhi and Martin Luther King, Jr. relied upon and illustrated. When I view it through this lens, I can find joy and meaning in my comparatively little corner of suffering and brokenness. I can embrace it and not try to hide or run from it. I want to live according to the grain of the universe, not against it. And at root, the grain of the universe lies in the direction of the cross. 

On my own I couldn't enter into this Truth today though, I was too weak. I didn't want to sing, I didn't want to dance, I didn't want to even look at anyone in the eye. I'm so thankful for all the brothers and sisters who came along side me and served me and entered into my brokenness and pain today so that I could finally enter into the healing joy of resurrection. 

❤️

"Before the Way became flesh,

People tried to escape the suffering and death of the flesh. 

After he came, people gladly accepted suffering and death in order to follow Him.

For them, to be with Him and suffer was far greater than to be without Him and not suffer. 

For them there was only one way.

One must mourn in order to rejoice. 

One must choose death to the passions in order to live.

But if one chooses happiness, one will reap sorrow. 

And if one chooses one's own life, one will surely die...

After He came, everything is reversed for those who follow Him. 

Sorrow has lost its fatal poison. 

Quiet hope lurks and grows in the inner recesses of despair. 

The weight of suffering cannot burden one unto destruction because sweet fruit is lifted from its branches."

- Christ the Eternal Tao, p. 189-190

Miracle, please.

It's past midnight and I'm sitting at Naan n' Curry down the street from UCSF trying to piece together an update. I'm eating a veg thali and watching the flicker of a Bollywood film out the corner of my eye and imagining myself back in India.  Earlier this week I was dreaming of taking the girls to a rainbow gathering in the Republic of Georgia. Fiona asks me daily when we can go back to Thailand. These days I find myself highly tempted toward escapism, wanting to be anywhere but here. 

It's cold and sprinkling outside and it took me what felt like ten hours to find my car, wandering up and down the street shivering with no jacket. My heart feels cold like the night, disconnected from the pain of it all. It's hard to write an update when I'm feeling like a bystander myself, watching the colors continually change from superhuman strength to pain and powerlessness, from keen engineer of survival to a madman speaking dillusional chatter, from hopeful warrior to a helpless shivering man I can hardly recognize, all this and back again, over and over and over. 

The staph infection is gone, but it has now been replaced by a lactobacillus infection. They've switched antibiotics to treat it. Though blood infections sound scary, they can be knocked out pretty effectively if treated early and appropriately. 

Ian has ejected from all basil opiates, meaning he no longer has a continuous flow of narcotics through IV. He can still push a button if he needs it, but he says it doesn't help much anyway. I really wish the occasional dillusional talk went way with the opiates, though. I think it could just be lack of sleep over the past few months catching up with him. 

Now that his pain is under control, we have a beautiful new goal: getting Ian home and out of the hospital. It hurts to think about because I don't know if it will ever be possible with Ian's desire for continued transfusions, but it's helpful to have a clear goal to work towards.  

Our main steps toward that goal are getting him back to eating food (this is the tricky part which includes his gut healing enough to handle food and no longer needing the NG tube siphoning fluid from his stomach) and getting him strong enough to walk the 3 flights of stairs between the parking lot and entrance to our home. Each day he thinks the intestinal infection is a little better, so we are hoping at some point he can pursue food again. This is quite elusive though, and the doctors aren't sure he will ever be able to eat again. We've learned that Ian tends to far surpass any doctor's expectations, however, so the goal still stands regardless of the many skeptical unknowns in how to achieve it. 

Ian is now up to walking 3 laps around the floor daily, and he's determined to slowly increase it. The other day, a nurse even took him for a walk outside to get his first breath of fresh air in nearly two months. 

This picture feels deceiving, though. In a sense it feels like he's come back to life after being on his deathbed. There were many nights I watched his every breath not knowing if it would be his last.  Things have changed so much since then, but in other more significant ways nothing has changed. Keeping it all in perspective, he's still dying of leukemia with his bone marrow and blood packed with only blasts. He's still surviving on daily transfusions and IV nutrition. His fevers have also ramped up with a vengeance this past week, so he spends half his day hiding under the blankets or cooling off with cold packs as he rides the fever wave with every 6 hour dose of Tylenol. It's rough. 

Oh it's so rough. I'm feeling exhausted from driving back and forth to UCSF and watching him suffer so long.  The girls are also having more meltdowns than usual, requiring more than usual patience and wisdom from their tired Mama. 

We need prayers. So many prayers. We need the wings of heaven to scoop us under and warm us with Divine comfort. I need my heart to melt again, I need to be able to cry again and again and not grow cold on this painfully long journey. And we really need healing. Healing for Ian's intestines so he can eat again and come home, healing for the leukemia so he can make his own blood and have an immune system again. There's really no hope at all for Ian's body besides a big fat miracle.