3rd time is NOT a charm – it’s a nightmare

I’ve been putting off writing this one for a solid three weeks now. I have had no words. It seems like I am living outside of my body watching this trainwreck which seems to be my life right now. At the beginning of May, leading into “birthday week” (all 4 of my boys have birthdays on 2 days in the same week) I was having some worsening joint pains. They didn’t concern me so much as there was a logical couple of explanations for them. When Gus had to be hospitalized for fever a couple weeks prior, I was due for another round of my vaccines and shots – then I slept in that hospital bed with him for a week. Made sense that I would feel out of whack. The pain continued and I messaged my nurse – we concluded that the vaccines could be the culprit or the new medicine I had been on for several months. This was the week of birthday 1 and the week we had the most amazing experience going to some Braves games. Game 1 was just the big three and me for breast cancer night. Game 2 we all went as guests of Mrs. Snitker – it was amazing. We got to meet some very special Braves from past and present and had some super special privileges, not to mention amazing seats. We were truly treated like VIPs. We basked in the glory of an amazing week, had more birthday celebrations throughout the week and crashed that weekend. The following Tuesday I went in for routine bloodwork. We got the biggest gut punch ever. My leukemia was back – just a few days shy of my 4 year transplant birthday. How cruel is that. ALL that we have been through over the past four years (just with leukemia, not to mention the breast cancer complications) for it to come back when we should be closer to the “out of the woods” feeling. Everything had been going so well.

I really had no words. I was mad. I was sad. I was overwhelmed. I still am all of those things. We agreed that admitting me was the best plan – this gave me a few days to try to process all of this, monitor me closely and get more labs drawn for more testing to be done. Just like so many other of my hospital admissions – that week and the weeks following have been kind of a blur. I did come home for the twins’ birthday that Saturday. The following week was mission get my port back – which was harder than it should have been, but Portia the Second was installed that Friday. These three weeks have been miserable. I have been in a very dark place. [you all have always said you appreciated my raw honesty so you are getting it here] My spunky, fighter spirit has been nowhere to be found. I’m scared. I’m scared this is “IT” and that just seems cruel and unfair – for us to have battled through what we have for the past seven years, finally get to the point we feel like we can catch our breath and make plans to move forward [I am supposed to be opening a local shop in a couple of months], and then it all go down like this. It seems like a mean joke. I have had nothing positive to say about any of this for the past few weeks. I have not lost my faith, but if anything it is the size of a mustard seed or one smaller than that.

And while this is a sensitive subject I feel that for you to truly understand better the stress we’ve been under I need to share the big picture while trying to respect my son’s privacy. It is all public record though, so there is that. Last year about this time our oldest was arrested for underage DUI. It has been an extremely difficult year, to say the least and while I would like to say that the arrest itself shook some sense into him, sadly it didn’t and there continued to be many arguments and stress regarding all the legal matters we had to deal with and just life choices in general. He moved out under bad circumstances – I missed all the “move my kid to college” moments – we weren’t allowed (by him) for that. He continued to push the limits and situations continued to get worse for him – always falling back on me to deal with some part of it. In February he called me one day and asked for help and I really thought we were starting to turn things around. I helped him find a place to live and we talked more and worked on our relationship. This past Monday I got a call giving me a heads up that he had failed his drug screen for alcohol and was going to jail the next day. I called him to give him the same heads up (because I felt certain he didn’t know) and I again became the bad guy and somehow I was making it worse. Tuesday we went to meet with my doctor about results of my tests and to discuss a plan. Tuesday my son went to jail.

My doctor mentioned wanting to do another transplant. That was another gut punch because I truly don’t want to go through all of that again – but I don’t want this to be the end either. The big boys are old enough, he wants to type them and see if they are matches – Jack and Eli are identical so theoretically that is only one chance at a match. Murphy cannot be tested until he is out of jail. The thought of the transplant being on any of my kids’ shoulders is heavy as well. If it doesn’t work, I don’t want that hanging on them – then again, if we don’t try and it doesn’t work, I don’t want that hanging on them either. If there were ever a definition of a “catch 22” this is it.

I start chemo tomorrow. We are doing a different regimen than we did before. This will be oral chemo for now. After this round we will do a bone marrow biopsy to see where we are. I am praying (though to be full on honest, sometimes feels like an exercise in futility) that somehow another miracle will happen in my body and we don’t need a transplant. You are welcome to pray for this miracle with me. None of this is fair. The fact that we have been through this before doens’t make it easier – it makes it heavier. And I am angry for Gus’s sake – he is having to deal with cancer as a just turned 7 year old and now having to carry that his mom has cancer for the third time. Seriously?!

When I was in the hospital the first week I got a visit from a female chaplain named Hepzibah. She asked me my favorite Bible verse and song – I told her I couldn’t choose. I told her I do try hard to be able to say like Job “Though He slay me, yet will I trust Him.” (Job 13:15). She wanted to sing for me, then we she noticed I was humming along asked me to join her – we sang “How Great Thou Art” in that tiny little hospital room. She contiued to speak about God’s Word as it came to her and referred to Joshua 10 where Joshua was leading the Israelites in battle against the Amorites. Joshua asked God not to let the sun go down until all the enemies had been avenged – and He did.

Gus and I have our own playlist of our favorite feel good/dance songs – Elton John’s “Don’t Let the Sun Go Down on Me,” is one of our favorites (we are particular to the George Michael duo version). That story about Joshua brought that song immediately to mind. That is my prayer. I don’t want the sun to go down on me. I am not finished – I don’t want to be finished. I think that the trials our family has lived through have much fruit to bear in the future and I want to be a part of it (besides, I can’t leave that all up to a bunch of dudes – they don’t even like writing!). I have told Dr. Kota from the beginning that I want to get old. And when it is becomming harder and harder to deny the parallel of Job’s life and mine (he admittedly had it way worse), I want the end of my story to read like his: “After this Job lived one hundred forty years, and saw his children and grandchildren for four generations. So Job died, old, and full of days.” Job 42:16-17

I start chemo tomorrow – Monday, June 10. I will update as often as I can – we are still juggling Gus’s treatment, the twins’ summer ball schedules, and our oldest’s criminal adventures – along with running our current business and starting a new one. We are moving forward with hope, no matter how frail and fragile it is at present. I need all of you prayer warriors to jump in and fill the gap for me – I just don’t have much left in me – but I am also not ready to be done.

Lesley