Thursday night was Andy's second night at home, and it was not easy. I was the sole overnight caregiver. Andy chose to sleep on the couch instead of in the hospital bed, which was probably a good idea because he was close to the floor when he fell or tried to get out of bed around 11:30 pm. I was in the kitchen and heard him yell for me. He insisted he had not fallen, but there he was, on the ground. After about 30 minutes of trying to get him up, I called Violet, who was at my place with the boys and she came over. (Fortunately, it’s just a half mile away). He had trouble getting his feet under him to stand, no matter how we tried to position him.
Eventually we managed to get him back onto the couch. Violet went back to my place, I went to sleep on the other couch in the living room, until 4:31 am when I heard him yell again.
He had a softer landing this time because I had put comforters and pillows next to the couch. But I could not get him back up. He kept trying to crawl away, saying the troops were coming. (I guess that’s a combination of ambien and morphine and trazadone speaking.)
I finally calmed him down enough to get him to stay still. After half an hour I gave up on getting him back into the bed. I got a blanket and slept on the floor next to him, trying to keep my arm around him in hopes I would wake up if he tried to crawl away. Two big stone art pieces in the living room are too big to move and I am terrified he will fall on them.
Andy had a radiation appointment on Friday, so Violet came over and helped me get him into the car. The front door of his house has a wooden porch; Andy has a few items on it including an antique wagon, but there was a clear path to the stairs from the door. Except as I was helping him out the door, his walker caught on the door frame, he started to fall, I tried to stop him, and we both went down. I broke my fall by landing on the wagon (and I am feeling it today), while Andy broke his fall with his the walker, and then with his shoulders and head on my mom purse, packed with a sweater, a small pharmacy of over-the-counter meds (you never know when someone will need a tylenol), 2 pairs of gloves, my wallet, a notebook, “Bone of the Bone” by Sarah Smarsh, various phone and tablet cords, and basically enough stuff without any sharp edges to effectively break a slow fall from a walker.
It was not a great start to the day – but then, as Andy predicted in his drug-hazed sleep earlier – the troops did arrive! While Violet and I were getting Andy back on his feet, Andy’s sister Sarah showed up.
The four of us headed into Burlington for Andy’s radiation appointment. After that, he had to get a blood draw for his oncology appointment on Monday, but no one had sent the orders down, so it took about an hour. During that time, I forgot that someone from a home healthcare agency was meeting us at the house at 2 p.m. I remembered when she called me at 2 p.m.
We rescheduled for Tuesday but she does have some overnight people scheduled late next week for us, and I have a few emails from potential caregivers; my goal for today is to connect with them and get more people scheduled to help.
We got back to the islands just in time to pick Charlie up at 3 and get me to my 3:30 doctor’s appointment for much-needed anxiety meds.
I had to take one of the assessment tests for anxiety and depression when I got there. I’ve taken those a few times in my life, and I currently take Lexapro which has been helpful for me. But I have never scored so high on these tests in my life. I started laughing before I even took it. The intro said, “Over the last 2 weeks, how often have you been bothered by any of the following problems?”
These have been the worst 2 weeks of my life. So I guess I’m doing okay because at least when I got the statement “feeling bad about yourself, or that you are a failure or have let yourself or your family down,” I was able to select “Not at all.” I know I am doing the best that I can and am proud of myself for navigating this insane experience. As hard as it all is, I feel stronger, even when I’m at my lowest point if that makes any sense.
My only other “not at all” was trouble falling or staying asleep,” but then again, sleeping is my superpower.
After school, Charlie hung out at Andy’s with Andy, Sarah and Violet, while I got to go home and shower and hang out with Jackson, who wanted some time alone.
I spent the night at my place with the boys, and Sarah and Violet were on Andy duty. This morning Sarah reported that he fell out of bed once but that’s better than last night, and at least Sarah convinced him to use the hospital bed.
I’ve talked to the boys about how serious this is and so has Violet; she has become not just their cool cousin but their confidante. We’ve both told them that we do not know Andy’s prognosis yet because we haven’t met with the mysterious oncologist, but that it is serious and there is a chance he may not ever get back to normal, and that he may die. The boys are smart. Charlie has been looking up a lot of information online about metastatic cancer; Jackson has not looked up the details and doesn’t want to do so. They seem to be doing as well as kids can be in this situation, and Jackson already has a therapist but Violet is working on finding someone for Charlie too. (She is also going to schedule all the home health people. Violet is a lifesaver.)
I know Andy is supposed to get Keytudra, which is supposed to be a miracle drug that can destroy tumors. He may be able to get that on Monday, according to the oncologist’s scheduler. They are holding an appointment for him but cannot book it until after his 9 am oncology appointment.
Violet and I can see the tumors growing. There is a new one on his lower right side. A couple of days ago, when we were helping him get dressed, I asked if I could touch it. I pushed into it gently. I don’t know how new it is, I just know I haven’t seen it earlier. He asked me what I thought it was. I told him he’s lost a lot of weight (probably 35 pounds by now) and that it’s probably just some skin from the weight loss.
But it’s not. It’s not symmetrical, and it’s about where his liver is.
He has a mole on the top of his head that keeps getting bigger and has been bleeding.
His feet are swollen and ice cold.
It is hard for me to imagine this miracle drug will be able to reverse the damage, even if it does destroy the tumors, but I guess we will learn more on Monday.
I know they are planning chemo too, and I only know that because someone called me yesterday to make an appointment to give him a chemo port.
Finding out how he will be treated has been like a game of telephone, with different people one degree of separation from the oncologist giving us shreds of information. I hope we can put the pieces together on Monday when we finally have the oncology appointment.
Heather, you are incredible. My love to you, to Jackson and Charlie, and to Andy.
I'm so sorry you all are going through this, Heather.