Hospice and Misery
September’s been rough, here are the latest updates…
My day has been spent trying to find something that will relieve Ana’s worsening mouth pain. She woke up this morning with VERY swollen and pink lips. She could barely speak or eat. After emailing with her doctors back and forth for a while, I mixed a paste made of baking soda and water (a suggestion from Kim, one of the oncology P.A.’s). Well, this made the pain FAR worse. The whole point of trying various home remedies was to help ease her pain without giving her oxycodone. After the “baking soda incident” as I shall forever refer to it, Ana had to take an oxy. She could barely open her mouth to take it at that point. I feel so bad that I made it worse.
Once, when Ana was eleven and in the midst of chemotherapy treatments, she got an itchy rash all over her body. So, I ran a bath and used a bath bomb that had gentle, soothing ingredients – I can’t specifically remember what they were. Well, twenty minutes into the bath, she started screaming. Whatever was in that bath bomb irritated her skin – it was raised, red, warm and she kept screaming, for over an hour she screamed, until the irritation subsided. It was my fault. I did that. This latest baking soda incident brought me right back to that moment…
Anyway, she took the oxy this morning and I ran out to the pharmacy to see what they had for lip pain/relief. I bought every freaking product I could find (as per the photo).
By the time I got back the oxy had kicked in. She felt relief for the first time in days and the swelling actually came down. So, I’m feeling very relieved that she’s doing better, but my concentration for the day is wrecked. We’ve halted the Ibrance for the next couple of days (anxiety), she may have to take more oxy to get through the school day tomorrow (anxiety x 2) and I finally bit the bullet and made an appointment for her official hospice admission for Saturday, 9/17 (anxiety x 3).
Also, her next scan is coming up on 9/23 (anxiety x 1000).
Some days feel too big and awful to face. I would love to crawl back into bed, but I have an actual work-related call at 2. I hope I can stitch my thoughts together well enough to sound coherent, because I’m feeling a bit wrecked right now.
Posted: 9/8/16 (First Day of School)
Ana is officially the strongest, bravest, most amazing person I know. Here’s another picture of her from this morning.. She got through school today on half an oxycodone and even took the bus home. She thoroughly enjoyed her day, though she was in pain when she got off the bus. Her lips were extremely swollen at that point so she took another half of an oxy but her lips kept getting worse.
By 7:30 she was sobbing in pain and her lips were puffier than ever before. She said this was the worst side effect yet and that she thought her lips would never go back to normal. I’d actually anticipated that she might say this. It occurred to me that whenever an awful symptom like this has happened in the past, it’s always felt ENDLESS, but we figure it out and it gets better. I reminded her of that, told her to try to relax and wait for the oxy to kick in.
Well, she came downstairs on her own about 30 minutes later and felt much better. She continued to improve over the next few hours but kept apologizing for needing oxy. She feels bad, like she’s disappointing me. I told her to stop that, I love her and it’s ok. I also told her she can stay home from school tomorrow if it’s not any better.
But she is determined to go to school. She loves going, seeing her friends and getting organized. She tried to explain the role school played in her life tonight – it’s not always fun or perfect, but it helps her feel in control and focus on the subjects she loves. Thank you all for your lip relief suggestions. We have a lot of stuff for her to try now and I definitely think that helps her feel more in control. ???
After my last update on 9/8, Ana’s lips continued to get worse and she had a fever of 101.7 on 9/9 (Friday night). So I called her local doctor’s office on Saturday to see if they had any kind of emergency Saturday hours since they’re now a huge group (they don’t – the on call MD advised me to take her to an urgent care place.) Urgent care would’ve sent us straight to the hospital, so I ended up calling Dr. Yamashiro’s office and speaking to the on call MD there).
She prescribed an antibiotic for Ana based on her fever and nasal congestion (she’d been extremely congested for about four weeks). Meanwhile, Dr. Y had told us to hold the Ibrance on 9/7 and it was now 9/9 and there was no improvement to her lips, so we continued to hold it. Within 2 days of taking the antibiotic and 4 days of stopping Ibrance, she felt about 90% better. She didn’t need oxycodone anymore and she was well enough to go back to school on Monday. She ended up missing school Tuesday due to fatigue (she’s still quite anemic) but went Wednesday and Thursday.
So, that symptom that seemed endless finally went away and we had our happy girl back for a brief few days. But…this morning Ana woke up with a lot of pain in her back near her shoulder. This is the spot where the biggest lung tumor is located (upper left lobe of her lung). This lobe is collapsed. It hadn’t been causing her pain, though she’s been struggling with fatigue and shortness of breath since June. 6 cm is about the size of a chocolate chip cookie.
It took Ana a while to tell me about this pain. She got all ready for school without saying anything. It was only after I started writing a note to her gym teacher about her reduced lung capacity that she admitted she was in a lot of pain. I guess she didn’t realize how big that one tumor was and how much it compromised her lung. She started crying, told me about the pain, and looked very scared. She said it was really bad and not going away. She didn’t want to go to school, but felt bad missing it. She didn’t want to be in pain, but felt bad taking an oxy again. She kept apologizing…
We gave her an oxy and put her back to bed. She will be officially admitted to the local hospice program tomorrow and then we’ll have a nurse available to us 24/7. I tried to tell Ana that it’s okay – if she needs to miss school, if she needs to take an Oxy, if she needs to figure things one day at a time…it’s okay. I don’t want her to feel guilty or like she’s somehow failing us. But none of this is okay, not one single thing. Nothing makes sense anymore.