I'm five days in on the second batch of chemo treatments of the second cycle, but this time I have to take three additional chemo pills in the morning, and three at night. I've always struggled with swallowing pills and these pills aren't necessarily "horse pills," but they're not small either. However, necessity creates ability sometimes, and I've (mostly) got the pill swallowing thing under control. And now, at the age of 50, I have a freaking pill box. That's right, the kind labeled with each day and night that holds the daily pills and regiment: anti-nausea, steroid, Prilosec, three chemo pills and then at night, we add in Ropinerole. That's a lot of pill popping. I'm essentially a walking pharmacy.
Mornings are a struggle. I combat excess mucus buildup from the night and wind up having to clear that, which takes like an hour (at least) of gagging, spitting, coughing stuff up, etc. Sounds pleasant, right? It's like drowning in your own mucus and saliva and it's really frustrating and aggravating. I have to get that junk out before I can even really drink or eat anything, or else that is going to come right back up. And I can't take the pills until I have food in my stomach. I usually start with an Ensure (strawberry, thank you) to get something down quick and easy. But the Ensure has to be set out to warm up a bit (not room temp, but warmer than the fridge) because the chemo meds make me highly susceptible to cold. If something is too cold, it's like glass shards going down my throat. Touching something too cold will actually burn my hands, as if they were on fire.
The IV chemo treatment this time ran into a complication about 80% through treatment: my vein blew and the chemo kind of leaked into the surrounding tissue, resulting in a very painful, very swollen arm. They switched the IV to my other hand for the remainder, but man, it was painful. Still sore, five days later. But that's not all the pain on the current docket. Apparently, you need to get your feeding tube replaced every six months. I haven't been using it that much as I have been eating normal food, and the formula was making me sick, but it needs to be replaced. 1) it's getting kinda gross 2) the ports at the end have now broken and 3) it's too long - the new tube will be more of a flush "button". But apparently it's a good 30 seconds to one minute of pain to pull this thing out of my stomach and replace it. That might happen this week. I'm dreading this.
And, on top of all of that, there are some bigger changes going on. To begin with, because of my health, I can no longer fulfill the duties of my job. Between being sick, exhausted, immunocompromised, managing medications, weight/food, and doctor's appointments, I can't be in the classroom, teaching. I'm struggling to even manage online class prep and work and I'm unable to keep up with the duties of my administrative, writing coordinator position. That being said, I will be going on social security disability. My last day at the the college is at the end of the month. But, the weird Catch-22 is that even though you get approved for SSDI (which stage IV cancer is an auto approval), you have to wait like six months for your first check! That's insane, right? Yes, we know you need financial support, and yes, we're going to give it to you, but first you'll have to be without income for six months!
So, in order to make that work, Jess and I have decided to move back to Frenchtown, NJ. Jess's dad has graciously offered to let us move in. He has a nice, big house that accommodate us all and he could use the help as well. It's just him and he's 75, so we can help each other. That'll allow us to not be paying rent (and mortgage still) here, while we wait for the SSDI to kick in. But it's not just the cost savings, it's also about family, friends, and familiar faces. This is a very difficult struggle, maybe even more so for Jess, who has to watch me go through this and feels helpless. Meanwhile, her network of support is back in NJ (mostly) and it'll be nice to be back where she can have some semblance of life back and some shoulders to lean on when she needs it. We'll be closer to four out of six of our kids and we'll be in a town we adore. The town that rallied around us after the fire. The town I dedicated Peanut Butter & Santa Claus to. Right now, while we have some friends down here and some support, it's still like being out on an island. It's time to go home. And Frenchtown feels like home. So, we're moving again...second time in three months. Our landlord is graciously letting us out of our lease and has been so kind. As far as our WV home, we've dropped the price one last time, but we also have a renter lined up if it doesn't sell in the next few weeks. So, the house will be paid for each month, and we won't have rent. No income back in NJ for a bit, but no rent either. If we tried to stay here, we'd burn through our savings in like four months. Instead, we can survive on what we have, mostly thanks to your kind and amazing Go Fund Me support, until the SSDI kicks in and Jess finds something up there.
As far as insurance and treatments go, I have VA healthcare, so with the end of my insurance from the school, I'll use the VA care. Come to find out that it may actually be cheaper! Whereas my current insurance is good (80/20 split until you meet your deductible), that still leaves some large bills. When you get a $15,000 bill that you have to pay 20% of, that's still a lot. But with the VA, it's a $50 copay and then everything is covered 100%! I'll be getting my chemo treatments at the VA hospital in Pennsylvania and apparently (according to my brother who is a CNP there), the oncology department is mostly University of Pennsylvania doctors. So, I should get great care. It's just a matter of making the transition and getting everything lined up.
So...that's where we're at currently. We're moving August 11th - which is ridiculously soon, and getting medical arrangements, SSDI arrangements, moving details, rent agreements, house stuff situated, packing, etc, etc, all taken care of. Yes, it's a lot. Yes, we're probably insane. But, like always, we do what we have to do. And this decision also is important for another reason. I don't know how long I have. Yes, nobody does - anything can happen at any time, but when you add the fact that I have stage IV cancer...that's not going away. We want to make the most of the time we have together. We want quality time together, and
with family and friends. This will give us the ability to embrace life and do more things together, with whatever time remains. Let's hope it's many, many more years, but the reality is that this is scary and serious and esophageal cancer is one of the deadliest and with one of the smaller survival rates. I'm a fighter and I'm going to keep fighting, but I want to enjoy the remainder of my life with my love, and our family and friends, and make the most of it.
Thank you all for your continued support and being there for us, and with us. It means the world to both of us! And you know what? I'll have more writing time now too and I have lots of books left to write. I'm not finished yet. You hear that, cancer? I'm. not. finished.
- j