Tuesday, June 7, 2016

Looking for Rainbows

“Just when you think it can't get any worse, it can. And just when you think it can't get any better, it can.” 
― Nicholas Sparks

They say a picture is worth a thousand words. I have no words for this picture. I can't even look at it without tearing up. Our cancer battle has continued. A week of fevers and rash, lots of tests, medicines, questions, and fears, but not a whole lot of answers.  

Here's what we DO know. The initial induction treatment didn't work like we had hoped. Going in, Brian had 87% blasts in his marrow. The bone marrow biopsy last week showed that he still has 40 - 50% blasts. Our doctor told us he would be meeting with other leukemia specialists to come up with a plan. We met with him today.

Tomorrow he is going to have his FOURTH bone marrow biopsy since April 29th. The team felt that since his platelets and white blood cell counts were beginning to go up this would be a good idea to make sure that his first round of chemo didn't work. The tests they sent to Utah showed that Brian has a very complex genetic thing going on. He doesn't fit neatly into any of the sub types. We were initially told he had biphenotypic leukemia. Our current doctor did not feel that was the case and in fact still says that is NOT what he has. However he does have a lot of genetic traits of ALL leukemia, along with traits of AML leukemia. I'm not sure how having traits of BOTH doesn't make this biphenotypic (both types) but the doctor says it is NOT that. Instead my poor husband's diagnosis is now "acute leukemia with ambiguous lineage." I couldn't make this up if I wanted to. Ambiguous Lineage.  Great.  What's that mean you ask? Hell if I know. I think it means we are in a league of our own. I tried to google it. I can't find much. While I always knew my husband was unique and special, I never imagined he'd have to be that way even when dealing with serious illness. Here's a picture just in case you don't believe me. 

So, pending the results of the bone marrow biopsy, Brian will be starting MORE chemo on Friday. They have to wait until Friday because he needs to get off one of the anti fungal medications for three days because it can't be mixed with one of the meds in the chemotherapy. They will be trying GCLAC + P + V. Basically it's a lot of chemo for both types of leukemia. We are looking at probably another month (at least) in the hospital.

On the bright side, his rash is almost gone and he was fever free most of the day. We had a REALLY GOOD visit. We talked, and laughed, and snuggled. I can't kiss him because well, germs plus no immune system means no kissing, so sometimes we just cuddle up in that stupid twin hospital bed and snuggle. We watch court tv, and sometimes he just sleeps but it feels good to be in his arms where I belong. Today we were snuggling and the deacon from our church came to visit us! I think it is against Catholic to snuggle in front of your deacon, although deacons can get married and have children so I may have to get back to you on that one. We stopped snuggling and chatted with him and prayed. He said going through all of this means less time in purgatory for us, Brian later said that is great and all but HOW MUCH TIME DOES THE DEACON THINK WE WILL BE IN PURGATORY?!?! This hospital visit already feels like forever! I guess if I need to spend a few extra days in purgatory for snuggling my husband, it was all worth it. 

The kids are holding up pretty well all things considered. I'm working on keeping their lives as "normal" as possible. It's really hard wanting to be two places at once. My heart is continually being pulled in two directions, and I still can't kick the guilt of not being able to be two places at once. I'm praying for strength and grace when I'm not praying for healing. 

Here are my positives for today.  We have a plan. We spent a nice day together, and I saw more smiles this afternoon than I had seen all week. If anything this sickness has showed me HOW MUCH I love my husband. I wish I could take this all away for him. I'd do anything to see him well. (Remind me of this when he's in remission and grumping about me forgetting to pick up dog poop.) 

To my sweet husband, I hope you know that in sickness and in health. I will love you forever and for always, because YOU are my dear one. 

God is good. All the time. 


Alice Fell said...

Well not being Catholic, and being Jewish, we dont believe in purgatory....So when you guys get to the next plain....I most likely will already be there given our age difference....Im letting you in where ever the Jews go cause surely your struggle here on earth is enough punishment.....thinking of you and your family.....wishing for only the best outcomes. Snuggle and hug eachother....its the best medicine. Alice

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