Be Here Now |2-24-18|

October through January were pretty uneventful over here. I guess that's why I stopped writing. I wanted to feel normal. Not document infusions every 3 weeks. So to fill my mind with distractions, I have focused my energies on house stuff and baked goods. Now all I have to show for it is several half finished projects, scattered paint cans, and several unwanted pounds. 

I actually had no intentions of clacking away on this keyboard again. And then it hit me while I was cooking (burning) breakfast. My reasons for starting this blog in the first place. I had forgotten that it wasn't just to keep everyone updated. It wasn't to torture myself with staring at this black cloud that moved into our house, uninvited. It was to document our journey. I wanted to write our story for our kids to read someday. I wanted to write to remember. Remember the crazy road we are travelling on. I wanted to not forget all of the little details. As much as I want to forget. I also don't. 

Mike stopped getting Brentuximab in December because it was causing terrible nerve pain in his feet. He was almost unable to walk. They warned him that if he continued the medication, the nerve damage could become permanent. He was scared to stop taking it since he always said it felt like his safety net. However, the news, "We're going to stop giving you the drug, and just monitor you. Let your body have a break, recover some strength, and heal." was music to our ears. He was ready to feel well again. I was ready...I was hopeful. Maybe I was going to get my husband back. 

In January, we celebrated Mike's 1st birthday, post transplant. 1 year! It went so fast, and still felt like the transplant and Hope Lodge stay was so long ago. 

To celebrate, the kind doctors gifted him with a PET scan. If YOU don't get one of those for every milestone or celebration, I'd consider you lucky. So he got scanned, and we got the same crap news we get every time he gets scanned. There were some concerning spots. He also gets a bonus birthday present: another biopsy. 

I'm not sweating it anymore. How many times will he get these scans, results, biopsies, just to hear, "It's scar tissue." I could actually get used to that, in hindsight. 

A week after the biopsy, Mike gets a phone call. News over the phone is usually good. "Hi Mike, we got your biopsy results in, so we want to schedule a day for you to come in and talk to Dr. Ganguly." This phone call does not usually equal up to being good news. Mike asked why she couldn't just tell him over the phone, and she replied that they just wanted to be able to talk to him in person, and that this certain day would work because Dr. Ganguly could be there, as well as Jodi, our transplant coordinator. 

Mike called me a little on the pissed off side. We aren't stupid. We haven't had to see Jodi since his transplant last year. Don't get me wrong, we like Jodi. We just don't want to see her. ;) So I email Jodi, because I'm pretty sure she's going to give it to me straight. Or at least talk to off the ledge that I had hopped up on. (metaphorically). Mike calls the office back and like the calm and rational person that he is, says, " Look. I want the results. You can tell me over the phone; I'm a big boy and I can handle it." 

The next week (hell, I don't know when it was) we go back to talk to Dr. Ganguly and he tells us what we already know. It's cancer. It's back (or was it never gone...?) They don't think it was ever gone. We discuss the next plan. So Mike starts a new drug, called Nivolumab. Basically it stimulates his immune system so it can fight the cancer, instead of the drug itself attacking the cancer. I really think this drug is going to be promising and a game changer in the cancer world. 

He's going to get this drug until April, and then get another scan to see if it's working. We are back in that boat named, Just Get To Remission So He Can Get A Transplant. What a shitty boat name. I wouldn't name a boat that. I'm positive that thing would not float. I'll go ahead and put on my lifejacket now. Can't save anyone else if I don't save myself first, right? 

 After his pep talk from Dr. Ganguly which was actually more like a lecture. (A much needed one.) It really hit Mike that life is happening right now. He has to stop focusing on going back to work, whether that means today, next month, or next year. Dr. Ganguly said, "You have to get your priorities straight. Stop worrying about work. I don't give a crap about work. I care about keeping you alive. And you need to start focusing on if you want to live or die." It was a tough love kind of talk, and I think Mike's ears finally worked. I should have slipped Dr. G a $20 and said, "Now about the dishes on his nightstand..." 

I'm kidding. I'll keep picking up the dishes on the nightstand, and the laundry on the floor as long as Mike wants to start focusing on BEING HERE NOW. We don't know what the future looks like, but it doesn't matter. What matters is being present. Enjoying these kids right now. They've grown so much in the same time that we've been focused on Mike's health. We're missing it, and it's happening right in front of our eyes. 

These life lessons are the ones that remind me that if it weren't for this crap hand we've been dealt, that we wouldn't be forced to really look at our priorities. 

We have also been in contact with the National Cancer Institute in Maryland, and they have a clinical trial that Mike could be eligible for. We have to wait and see how this Nivolumab works. If it does work, and the cancer is in remission, or at least lessening, then he is going to prep for an Allo Transplant, where he gets stem cells from a donor. If the Nivolumab does not work, then we're heading to Maryland. 

Let's rename and repaint our boat. I'm going to call her Options. Options and Chocolate Cake. And if I change my mind again, don't worry, I have plenty of paint. 

XO 

Robin