It has been too long. I know it. I’m struggling hard on this roller coaster. I spent today’s session with T crying.
Mom just hasn’t recovered from being in the wheelchair…from the pelvic fracture and the deep muscle spasm. For a few weeks she was moving around better, walking more but still sitting to take breaks. But she was still pressing on, doing what she could. We tried a new medication, but it gave her problems with her fingers and toes. Numbness and tingling. That started with her first chemo, but the recent medication made it worse. The doctor stopped the medication because it was a high likelihood that the numbness and tingling would progress to painful neuropathy.
The nurses at the oncology center noticed that both Mom’s legs were swelling. It was decided that she lymphedema–swelling from water and “stuff” that wasn’t being filtered from her body by her damaged lymph system–and that she needed to go to physical therapy to get manual massage and compression wraps to help move the water up her body to parts of her lymph system that was working. That took some time to get set up, but we finally got it scheduled to start after Christmas.
We were expecting to go to a local research hospital to see if they had a trial, but with the holidays coming their response was a bit slow. Then they said they had no room for her in the trial until the end of January, so we decided to pursue the next option with her regular oncologist. Only…something happened and we’re not sure what.
Christmas day she wasn’t feeling so great. Then the weekend, she continued to feel “yucky.” She was starting to feel lethargic, tired, not really interested in eating. But she was forcing herself to eat to keep her energy up. The Monday following she was due to go to the physical therapist for the lymphedema evaluation. When I went to meet them at their house, I could see she wasn’t feeling well. She was exhausted and hardly interested in moving. She was using the wheelchair again. But she persisted and made it to the appointment. The physical therapist did the evaluation but only wrapped one of her legs, so as not to tax her body too much. We made it home and just inside the house, Mom threw up. And that’s where the downhill slide really began. We had another appointment the next day to go back to the physical therapist, but just minutes inside the offices, I had to race her wheelchair into the restroom so she could throw up again. I could see she was getting more dehydrated and weak, but she wanted to go through with the second appointment. They wrapped her again and instead of leaving it on for six or seven hours like the day before, this time she was supposed to leave the wrap on for two days. We got Mom home and she just kind of collapsed into her recliner.
The next morning my father called to say she wouldn’t get out of bed. She was too exhausted and weak. They’d spent the night getting up every ninety minutes to get her into the bathroom to pee…a result of her leg being wrapped and the fluid being expelled from her system. We called the physical therapist who told us to immediately remove the wraps and consider going to the ER for dehydration. We ended up taking her to the urgent care for her HMO (where she threw up again in the car), where they kind of pushed us around. She wasn’t really dehydrated, but her blood work said she was malnourished (from throwing up and not eating for fear of throwing up). It also came back with an elevated liver enzyme called Bilirubin. They did an ultrasound of her liver then basically said they saw nothing “remarkable” and sent her home.
The next day was New Years eve day. She wouldn’t get out of bed. She didn’t want to eat. She didn’t want to drink. She barely sat up. She didn’t open her eyes. We called the oncologist’s office but he was out for the day and the on-call oncologist only said to put her on the BRAT (bananas, rice, applesauce, toast) diet and keep hydrating. If it got critical, to go back to the urgent care again. So we pushed Mom to eat. We got her anti-nausea medication (different from the stuff the urgent care gave her because that didn’t work) and antacid for what we thought might be acid reflux. We encouraged her to get out of bed. To try to eat. To keep her eyes open. She would do so for a little bit, then revert back into sitting slumped in her recliner in her robe, eyes closed. No energy, just looking like she was suffering from so much discomfort and distress.
I’ve been spending as much time at their house as possible, trying to keep her going, trying to give my dad and brother a break. Finding foods for her to try to eat, distracting her, encouraging her. She’s tired, I can see it. She doesn’t want to feel this way. It’s not pain, but she feels like she wants to throw up every time she moves. It was a very long weekend. I spent much of my days there, leaving my husband at home with the dogs.
This morning we took her to her oncologist’s office to get her port flushed (it was put in when she was first going for chemo and they left it in just in case she needed to use it again). While we were in the waiting room, I was trying to chat with her, but she just waved her hand and said, “I’m not talking.” So I stopped. When we got into the exam room, we saw the oncologist and I asked him to come speak with us if he could. When he saw mom in the chair, head resting on her hand, eyes closed, he nodded.
A few minutes later, he came in to ask what was happening, and we filled him in. His first step was to get repeat blood work, especially for the high liver enzyme from the urgent care visit–a liver issue could cause the nausea. Then he ordered an MRI for her brain to see if there was spread of the cancer, which could also possibly explain the nausea. Tomorrow is the MRI. If the liver enzyme is still elevated, he’ll want a CT to see if the cancer has grown in her liver, causing a blockage or possibly shut down.
I helped my parents get settled in at home after the appointment, where my mother threw up shortly thereafter. They’ve got her going on steroids to help the nausea and stimulate appetite, and zantac for the acid reflux. After I confirmed the medications with my dad, and their schedule, I left to go see T because that appointment was previously scheduled. I made the drive there, got through the front desk check-in and the wait to get into T’s office. By the time she walked in from her bathroom break between clients, I was already crying. And I cried through the whole appointment. I’m not ready for this…whatever it is. I’m not ready to see her suffer like this. I’m not ready to see her go downhill. I hope this is a blip, something weird, and she’ll perk back up again. I hope. Goddammit I hope. I want to hope.
My brother (who lives with my parents) and I are trying to handle her business. Bills, insurance issues, investment issues, a few business issues. I’m trying to help handle the medical appointments, like canceling the upcoming physical therapy appointment that she can’t get to tomorrow. I’m afraid I can’t keep up with everything.
Butthead started limping again last week, for no reason. We put her on pain medication, but it doesn’t seem to be doing much. We’re supposed to leave her on it for 7 days, which would be tomorrow. I can’t even take her to my parents’ house when I go over because she’ll want to play with their dog and that could cause problems with Butthead’s already bad recovery. So I’m pulled in the different directions. My husband, my parents, the dogs. And I feel guilty for thinking about the dogs when my mother is suffering and struggling.
My husband understands. He has told me multiple times over the last week that he understand that I need to be with my mom and help them. That doesn’t mean it isn’t on my mind that I’ve been leaving him to fend for himself day after day. He’s leaving work at lunch to come home and take care of the dogs while I’m running around with my parents and my own appointments. The dogs are getting left home alone more and more as I’m running in and out to my parents and all the appointments. I’m constantly sending out emails to update my uncle and brother. I’m constantly answering their questions via email. I’m responding to queries from relatives. I’m taking notes at the doctor’s.
It’s not that I resent any of this. I don’t. I just feel pulled. I feel strained. And this is only the beginning of the terrible journey. And I know I won’t be able to keep this pace up for any length of time. I don’t know when to find help. If this is some kind of virus or something “minor” and not the cancer, then I don’t want to rush out to find help/caregivers for my mom. If it IS time to find assistance, I’m not even sure where to start.
I’m both exhausted and frozen. I’m both terrified and overwhelmed. I keep trying to push away the emotions to stay on task, with T’s voice in my head telling me to take time to feel the emotions. To let them come, to nurture them and let the “child” feel the pain of this situation. I told her I’m afraid if I do that, I won’t be able to pull it back together to do the things that need to be done.
It’s too much. It’s so much.
I keep trying to stay in the moment. I can’t control what is happening. Every plan I make will be blown away by whatever is coming next. Why waste my time planning?
My own six month post-cancer diagnosis checkup is in two weeks. I can’t even…there’s no room for it in my head. I also have an abnormal blood work follow-up for high calcium in February. I’m also seeing second therapist specializing in EMDR and hypnotherapy, to try to work on some other issues. That’s another post.
I’m sorry, after all that babble and blather, I feel I’m leaving this post incomplete. A long sentence without a period. I just have nothing.