A few updates

I guess it's been a few weeks since my last update. I've had quite a few people reaching out wondering if they missed an update, so I figured I better get to it. I haven't been in the mood to share and there hasn't been anything groundbreaking going on regardless. But there are a few updates, so here we go.

The last time I wrote was just after Fourth of July. My side effects from the infusions continued to bother me for a few days but I was feeling better just in time for the surprise birthday party I threw on Saturday the 8th for Daniel. With the help of a lot of people, I was able to pull it off and he was surprised. I had something planned last year for his 40th, which he didn't know about, and canceled it after I was diagnosed. I was in bed post-chemo on his birthday last year and it was kind of a bust, as far as I was concerned. I was determined to do something special for 41. We spent the day on Belle Isle with friends from near and far, some of whom he hasn't seen in decades. The weather was perfect and we all had a great time. 

The day I last wrote, the roof of my mouth hurt a little but I didn't think much of it. Within 48 hours a large portion of the roof of my mouth was covered in painful sores. Somehow I made it through a year of cancer treatment with no mouth sores and now I have them! That and my jaw was killing me -- I suppose that's where the joint pain from my new drugs was manifesting itself? So for about a week it was pretty uncomfortable to eat or drink anything. Early the following week one of my natural practitioners gave me a supplement he swore would help. I took that and continued swishing with baking soda and sea salt and, no kidding, the sores were healing up within 48 hours. I'm still in the clear. 

We had a busy couple of weekends heading home to Ionia for the fair. James had a great time, loved the caprade (parade), was introduced to and is now obsessed with cotton candy (I'm looking at you, KK), rode many rides, sampled her first elephant ear, and got to pal around with various cousins, aunts and uncles.

In between the two fair weekends, I went back for another round of the Herceptin and Perjata. I have two more of them together, the last one being on the Aug. 31. My doctor still doesn't know if that's the end or if I will have to continue on with more Perjata. She said she is literally calling whoever did the study to try to get the rest of the data (I have no clue how that works) and now she's on vacation for a couple of weeks so I won't know until I arrive on the 31st whether that's my last one or not. If it is, my plastic surgeon said he can take out my port when he's doing my reconstruction on Sept. 19. Everyone cross your fingers and toes on that. I really want this thing out.

BUT I want to do whatever is best for me. Unfortunately, that means the end of the tunnel may not be here quite yet. At my appointment on the 20th, Dr. B told me about yet another study that was just released. I'm positive these studies are helping to save my life but.... UGH. Anyway, in the weeks until I see her next she's going to have my tumor samples tested to see how much of it was HER2 negative and how much of my tumor/cancer tissue was HER2 positive (I thought it was all or nothing, so what do I know). If the majority of what was left was HER2 negative, she wants me to do more chemo. MORE CHEMO. A chemo pill. She explained why but honestly, I should record these conversations when I'm alone because my mind either goes blank or races -- I'm not sure which -- and I just don't retain it all. I'm not sure if it's the chemo brain or the shock of another freaking fork in the road. There was discussion of it reducing mortality rates (good) and decreasing chance of reoccurrence (also good) and how it took them a while to figured out the dosage in the US because it was working like gangbusters in Asia but was sending Americans to the hospital (confused and feel overwhelmed by information? Me too). I'll either literally have to record her on the 31st or take Daniel to be my personal recording device.

At least I'm assuming she'll have all the info by then anyway. She's not saying that I need to do it for sure -- she honestly has no idea because they didn't test the tumor for this when it was removed. She just said it's a possibility and wanted to let me know she would be testing the tissue, etc. If I do, she said this pill (I forget the name) doesn't have all of the side effects of the other chemo -- no hair loss, no major nausea, etc. Just one side effect that I just can't seem to shake. I'll be chained to the bathroom, which will be nothing new, but boy am I sick of that too. Because my system is so delicate right now, I'm afraid to eat or drink if I have to leave the house or transport James anywhere (have you ever tried to get a 3-year-old to move quickly into a gas station bathroom?). These are things I never thought I would share with people on the Internet. But why be bashful now? This is cancer.  This particular side effect has been really exhausting and frustrating in recent weeks. The idea of prolonging this even further... I don't know. On one hand, sure, it could be worse. On the other hand, I'm feeling more and more like a shut-in and it's not fun. I guess I'll find out on the 31st and go from there. I suppose I could always not do it, even if it's recommended. I guess we'll have to cross that bridge at the end of the month.

Anyway, there are a lot of questions right now and hopefully answers coming in the next few weeks. I had my second Zoladex shot last week, which for some reason was not quite as bad as the first. I also had a bone density scan that day. Honestly, I can't remember exactly why I'm doing that. I'm not being a very good cancer secretary right now. I think it's to get a baseline because the shot and my new daily pill can have an effect on your bones and they can compare future scans to it. The results were posted online and said there was improvement in certain areas -- but I don't remember there being any areas that were problematic to begin with. Something to ask my doctor about at the end of the month I guess. Either way, there was nothing negative listed, so that's good. 

I also visited my plastic surgeon who explained in detail what he will do during surgery and what the desired result will be from the outside. So, that's all set. I'll see him one last time a couple of weeks before surgery to make sure we're all on the same page. 

We have a couple of getaways planned in the several weeks between now and surgery so there is a lot to look forward to. Next up, we all head to Maine to stay at the home of my good friend Erin from college. She and her family will be away on their boat for most of the time we are there, returning for the last couple of days of our trip. It will be the four of us, plus a friend of Claire's and I'm just hoping I feel well for the majority of the time I'm there. I have an infusion the day before we leave, so fingers crossed.

James and I headed back to Ionia last weekend while Daniel was at his Grandma Johnson's 100th birthday party in Scottsdale. While we were to attend a friend's wedding celebration over the weekend, we headed back a little early after my uncle Paul passed away suddenly last Tuesday. I am happy he, my Aunt Maggie, Cousin Tim, his girlfriend Emily and their daughter Edie all had spent the weekend before that together for the fair and it was well-documented by Maggie, the paparazzo. This was the first time in our family in many, many decades that anyone has died unexpectedly. Perhaps we are lucky in that regard, but it was quite a shock. One benefit to the majority of the family being in Ionia is that the troops immediately rallied. As we gathered for his celebration of life, we all felt like he should have been there. Perhaps we need to flip the script and start celebrating people a little more while they are still alive.

I'm continuing to contemplate and navigate what my new normal when this is "done" is supposed to look like. It can feel overwhelming and confusing. Throw in some menopause hormones and holy cow, life is a roller coaster sometimes. How do we truly make the best out of the short time we've been given on this planet? What does it look like? I haven't figured that out for myself just yet, but Paul was certainly an example. He enjoyed the world around him, pursued his interests with passion, loved and was loved in return.  He will be missed.