The countdown to bone marrow transplant is underway…
Only a few days left…
June 3rd is the day set for my admission and starting the conditioning chemo. June 8th is full body radiation (I’ll be getting 2 gray. A gray is a unit of absorbed dose- 1gray= 1joule/kilogram). On the 9th my sister Erica’s stem cells will be given to me through my port. This is what they call day zero. I’ll get two day’s break from chemo after that, and then start an anti rejection chemo. The dosing for the conditioning chemo on dialysis was figured out by eight brave souls, the first of which gave his life for the rest of us. The study they were a part of was only just published this past June. I feel very fortunate to have had these people go before me. Sadly they only figured out the dosing through day zero. They were all able to get kidneys on the same day they got bone marrow, so the anti rejection chemo dosing will be uncharted territory. Some hospitals have done transplants on dialysis as one offs, but there is no documentation to reference. The biggest risks are that there will be too much chemo and I’ll succumb to liver toxicity, or that there won’t be enough chemo and graft versus host will spiral out of control.
Stemcell Donating Experience
This past week Erica donated her stem cells! Jenna came too. It was wonderful to see them. Donating was harder on Erica than I thought it would be. She had several days of shots to stimulate her marrow to produce extra stem cells, and to release them into her bloodstream. These made her bones extremely achy. The first day of donation, the apheresis machine alarmed time after time during the collection process due to insufficient blood flow. Erica had an IV access in each arm, one to draw the blood and one to return the blood. Similar to dialysis, the flow pressures are very important for the machine to be able to do its job. Too much pressure and it can cause hemolysis; too little and it can cause clotting. The machine does run slower than a dialysis machine, so they use citrate to help prevent clotting, too.
For Erica, the pressures were running high. They had her trying all kinds of things to improve blood flow; holding her arm out to the side, heating pads, wiggling her fingers, creating new IVs… By evening she was wiped out, had a severe headache, and was disappointed that they’d only been able to get half the cells needed. She’d have to do it all over again the next day. Jenna and I did our best to pep her up with delicious food, drinks and an episode of our guilty pleasure, America’s Next Top Model. Thankfully the second day was much better. They accessed a much deeper vein and the pressures were great. We love the venous access team! All in all she was hooked up to the machine 5 hours the first day, 4 the second. The shots she was on were quite short acting, so the side effects wore off by the next day. We were even able to do yoga with Mike that afternoon and Erica kept up like a champ. One of the highlights of our time in the hospital was when one of the nurses announced that this young lady that was leaving had just donated stem cells to someone she didn’t know. The whole unit burst into applause. It made me want to cry.
My dialysis catheter is OUT!!! Getting it out was a bit traumatic, unfortunately. They said it was no big deal… they said there would just be a little cut around the “collar”, a strip of velcro-like material that your skin grows into so that the catheter stays in place. I got some lidocaine shots around the collar area, but as they tried to pull it out, it wouldn’t budge. Apparently, my skin had grown attached in a whole other section. So they pulled, and pulled for twenty minutes. I could feel the skin slowly tearing in the areas with no lidocaine. I’m glad it’s over. When it was out I was shocked by how long it really was- 45 cm! It ran all the way from the top of my femur to right below my heart.
Now it’s up to the graft… there’s no catheter to fall back on. Mike has been such an amazing companion and partner in learning home dialysis. He makes the dialysate batches, he preps the machine, he inventories supplies, he calls the insurance company about all the crazy claims… and the most burdensome of all, he deals with the needles. These suckers are big. He sticks me at least every other day at least twice, or more times. For the machine to work, the needles have to be placed perfectly. The graft is very slippery and doesn’t want to be poked. The blood flow in it is so high, the needle will just slide right off. There’s often blood on my arm as soon at the needle goes in, so that’s another level of slipperiness between rubber gloves and fresh blood. It’s no fun. Mike hates needles. He hates blood. But, it turns out he loves me.
- That I wouldn’t get sick
- That my time with Mike, kids, family and friends would be sweet… the pressure is on to make the most of what could be my last days… it’s hard to take it in.
- That dialysis would continue to go smoothly, and that Mike and my anxiety surrounding it would melt away.
- That there would be NO SETBACKS during the transplant and after!! My experience has been filled with setbacks thus far… Please ask that God would grant me full healing with no more suffering or delays!
This week I’ve been thinking about anxiety and how it plays into the life of the Christian. I’ve heard many quote Philippians 4:6-7, and say we have the power to not be anxious through prayer and petition with thanksgiving. In the past I’ve found great peace in those verses. Lately, however, peace has been looking down at me from the edge of the cliff from which I hang, and telling me to hang on, but not throwing me a rope. There is no wave of rest that washes over me like it used to when I pray. Instead I’ve seen myself reflected in other passages… Like Jesus in the garden before his crucifixion, begging the father to take the cup from him. Here is an anxious psalmist, a fellow sufferer:
I cry out to God without holding back. Oh, that God would listen to me! When I was in deep trouble, I searched for the Lord. All night long I pray, with hands lifted toward heaven, pleading. There can be no joy for me until he acts. I think of God, and I moan, overwhelmed with longing for his help.
You don’t let me sleep.
I am too distressed even to pray! I think of the good old days, long since ended, when my nights were filled with joyful songs. I search my soul and think about the difference now. Has the Lord rejected me forever? Will he never again show me favor? Is his unfailing love gone forever? Have his promises permanently failed? Has God forgotten to be kind? Has he slammed the door on his compassion?
And I said, “This is my fate, that the blessings of the Most High have changed to hatred.”Psalm 77:1-10 NLT
In all this though, I still have hope. My friend Amanda said God would heal me. Erica’s friend Rowenna saw her in a dream with me and heard God’s voice say He would make a way… and then we found out Erica was the donor! Another passage that gives me hope in the pain, and shows the anxiety of those in the early church is this one:
Rather, as servants of God we commend ourselves in every way: in great endurance; in troubles, hardships and distresses; in beatings, imprisonments and riots; in hard work, sleepless nights and hunger; in purity, understanding, patience and kindness; in the Holy Spirit and in sincere love; truthful speech and in the power of God; with weapons of righteousness in the right hand and in the left; through glory and dishonor, bad report and good report; genuine, yet regarded as impostors; known, yet regarded as unknown; dying, and yet we live on; beaten, and yet not killed; sorrowful, yet always rejoicing; poor, yet making many rich; having nothing, and yet possessing everything.2 corinthians 6:4-10 NIV
For a long time I believed that God would not allow any needless suffering; that every little twinge would amount to some form of beauty or godliness. When I started this journey of sickness I was even excited! What awesome things was God going to bring out of this? The first few months were hard… I was very sad when the first round of chemo did nothing… but I was still sure God had a plan, and it was good. As the months wore on, and kidney failure hit, and sepsis, and gall bladder attacks, and headaches, catheter problems, blood clot in the leg… chaos unfolding. I started realizing that I can suffer a whole lot for nothing. Me having a splitting headache one night benefits no one. The needles for dialysis giving me a nerve twinge that lasts four hours, making me grit my teeth through the treatment, isn’t bringing about beauty or godliness. Maybe it’s beneficial for Mike and the kids to watch me suffer in some way, but sometimes no one knows I’m suffering. What good is it? All it does is prove that we live in a world that’s not quite right. While stuck here, we get a taste of glory, and a taste of misery. Heaven and Hell. Right and wrong. I long for God’s presence… his goodness… for him to be next to me instead of looking at me from afar. He has always been my friend, but he’s left me feeling alone lately.