As usual – I’ve sat down to write several times and never gotten it done. I guess I have perpetual writer’s block. I try to think of something witty to start with, but the only thing that came to mind was, “guess who’s back… back again…. guess who’s back…. tell you’re friends… ” but I wasn’t sure all would get the reference and those who didn’t might Google and then I’d be a tinge embarrassed when they figured out where it was from and so I just walked away from the keyboard each time. Anywho… yes, Wally is back with me. In fact, I realized we were celebrating our six month anniversary together! In honor of that, and Christmas, I decided to give me a break from him (don’t tell him, it might hurt his feelings) and for him a couple of days off. So since Friday night I’ve been singing like Pinocchio, “got no strings on me!”
I can hardly believe I’ve been home a month and a half! It’s been quite a whirlwind. Really, this whole year has been a whirlwind. This whole infection started back in February/March right smack in the middle of baseball season (which was 70 something games in just a few months because we had middle school, JV, and Varsity baseball schedules to keep up with!). Since my initial hospitalization in June, I have had anesthesia six times (I think), which really messes up my sense of time for quite a bit. But back to Texas…. I am immensely thankful for my whole medical team and my friends in Dallas who took such amazing care of me. I really don’t think I’d still be here if it wasn’t for them. They are still over there fighting for me battling insurance because, of course, they have denied us twice already. The day I was supposed to fly home, a hurricane was coming in the Gulf and it was not good weather for flying small planes. I could wait till later in the week, fly commercial, or drive. I got vetoed when I said I could drive, so Marsh hopped in the car last minute to come get me. When he got to Dallas he said “wow, you look so much healthier – your color looks much better!” I didn’t realize I actually looked so sick. We drove 12 hours on that Sunday and spent the night at my mom’s. My childhood best friend’s mom had unexpectedly passed away so we went to her funeral Monday morning. That afternoon we met with lawyer #3 (yes, still having to battle about my Dad’s estate – greed does awful things to people). I came home to a sick five year old, an in trouble teenager, and an injured mother in law (she had an accident that day while we were driving but wouldn’t call us because she is that saintly – so thankful our “framily” in town was here to take care of her for us!). It was definitely an “out of the frying pan, into the fire” kind of welcome home! I had the rest of that week to settle in and the next week was Thanksgiving.
We had a subdued Thanksgiving. My mom and stepdad came over. My cousin had to cancel last minute because her little girl was sick. Thankfully I have all these teenagers to eat all the food. G went to school that next week because he was in the Christmas program and they were practicing daily. He knew all his songs, and thanks to Mrs. Angie’s over the phone coaching, he performed his line and tripped over his angel robe perfectly! As much fun as it was though, he and I were both glad to be back at “homeschool” the following week. We jumped right into Christmas baking, doctor’s appointments (I had to get back on everyone’s schedule), and crafts. The school G had been attending was going on a field trip that Friday and he was dying to ride the big yellow school bus (as all homeschool kids everywhere do at least once – it’s an immutable law of nature). So we went. WE, includes me. We rode 30 minutes on a muggy day to see the Nutcracker that several of our friends were performing in. Then we took the aforementioned school bus to Burger King with this passel of elementary children, before we could make our way back home. The play area smelled like sweaty socks. I told G that I hope all his bus-riding hopes were fulfilled because I was not doing this again! (I really did enjoy the day – I’m just being dramatic) We stopped by another day for the Christmas party and got our pictures made with Santa. I am so thankful for our little local school – it was a great experience for him.
Since being home I have checked in with all of my regular doctors and my bloodwork is still looking great. I met with the plastic surgeon here in Georgia that my Texas surgeon knows and spoke with about my case. I like him. We decided that putting Wally back on was the smart move – even though I was not happy about it. The hope is to build up some more tissue before we graft the area. And it’s been working! The area has thickened up and is doing what it’s supposed to – the fact that this area is not radiated is a major help in healing. The communication with this surgeon has been much better than the one I had here initially – he thinks we are getting much closer to being able to do surgery. I will go in on January 17th to see if I get the green light. I finished up my 6 week course of two antibiotics since being discharged from the hospital and so far so good – I still keep holding my breath hoping that whatever little pain, stuffiness, tired feeling isn’t my infection coming back.
It’s been a year! It’s been hard – again – but I am still thankful. A while back I googled how many women who have been treated for breast cancer develop AML and the first answer said 0.5% – wow! I have continued to talk to “my” patients over the phone, FaceTime, whatever we could make work. One of my most recent ones was a very kind older man. In fact, we had only spoken on the phone and over FaceTime until the day before I flew to Texas. He was in the waiting room at the Cancer Center that morning and recognized me immediately. They were running behind that day so we sat and chatted for almost an hour. A couple who came and sat beside us happened to be another one of “my” AML patients who shared the same first name with this man (which is not a common name). It was serendipity. That was a great day, so full of hope for all of us. He texted that he was praying for me while I was gone. His wife texted me the other day that he had passed away. The other fella has had his transplant postponed several times because of complications. I realize more and more what a miracle it is that I am still alive. AML is not kind and is a hard beast to kill. I have struggled a lot lately (and the past several years) about all the things I haven’t done that I “should” have – the gifts I never got finished on time, the phone calls and texts I haven’t responded to, thank you notes I need to write, the cookies I didn’t bake, the house that never gets organized or cleaned properly, the projects I never get around to finishing, the book I can’t seem to get written…… BUT I am going to tell myself what I tell my children – I am going to focus on what I DO have and what I have been able to do. I had an amazingly fun month in Texas with friends amidst some awful circumstances – I even made a quilt while I was there! I had Thanksgiving and Christmas with my husband and kids – again – and they are all healthy! I baked over 120 ginger molasses cookies and got them gifted to so many friends. I baked my way through 99% of my kids’/husband’s favorite Christmas goodies list. I got a lot done that, according to my medical record the past few years, “shouldn’t have” been able to be accomplished.
Christmas Day was pretty subdued here after G’s excitement that morning. We went to church and were chosen as the family to light the final advent candle. Our pastor prayed for our family specifically while we were up front. It was special. We came home and everyone kind of “chilled” quietly the rest of the day. I haven’t heard from my donor in a year and a half after our initial “meeting” over email. I never wanted to be pushy and told her I would leave it up to her to determine how close she wanted our relationship to be. Despite all my urges to ask her more questions and be my new BFF, I have respected that. I have still texted her off and on when there have been special days just to tell her thank you again. I had texted her that this was the third Christmas I was spending with my kids that I wouldn’t have without her. Christmas night I got a reply of three hearts. My day was completely perfect then. I am so thankful for her selfless gift, it blesses me and my family daily. I am most thankful for a God who loves me so much he would send his Son to die for my sins and heal me of wretched diseases that have the upper hand, even when I don’t deserve a bit of it. I hope you all have had a wonderful Christmas.
So much love and thankfulness for your gifts, cards, support, and prayers,
See you in 2023!
Lesley
Cancermamma 