I am finally back to feeling like a person again. I was able to spend some time out of the house this week and even do a little bit of walking outside. Yesterday was a truly lovely Christmas – we took our time and enjoyed the process of opening presents and had an amazing lunch delivered by a friend.
I’m finding it hard to enjoy this downtime; I’m just focused on how badly I’m going to feel in the future. This feels like my only chance to accomplish anything for the next 6 weeks and the list of what I would like to do is overwhelming. All I want to do is withdraw and hide, but I’m pretty sure that is not self-care at this point. I think it is time to dig deep and force myself to do the very hard kind of work of washing my face everyday, going for a 5 minute walk, reaching out to a friend with my worries.
So, friends, here is one worry that has been on my mind lately. As I’ve mentioned before, my main oncology team is currently 3 hours away. I woke up in the middle of the night last week and realized that there may come a point where I cannot get myself to appointments that far away by myself. Our family strategy for coping with all of this is built on the idea of me being able to care for myself, but this past chemo reminded me that that may not always be possible. What are we going to do when a 3 hour drive isn’t feasible on my own? Or when I can’t be home alone while my husband is at work? I’m feeling very sad and humbled by cancer lately. I hope my hard work campaign can improve my mood soon.
I met with my chemo doctor this week and we’ve agreed that we’ll lower my dose by 20% for the next round. He said that I don’t need to get that sick for the drug to work, and that he fears getting the full dose again would put me in the hospital. I’m so grateful that he’s so humane.
Unfortunately I still don’t feel back to my normal yet. My blood work this week showed some of my electrolytes were off and even though I’ve been focusing on it with diet and supplements, I’m still having symptoms from it. The chemo triage nurse and I spoke this morning and it was my choice whether to continue home care or come in for IV fluids – I chose home care, which I hope I don’t regret. I wanted to spend the day with my family instead of in the infusion room.
I had a hard visit to the radiation center this week. I went in at a different time than my normal and discovered a group of patients that has bonded. They all have the same diagnosis and are going for the same treatment, they knew what number treatment everyone was on and were checking in on each other. They tried to welcome me to radiation as if it was my first time and I felt myself being the Scary Patient at them. When you’re going through your first set of treatment, it’s so terrifying to think that it might come back. And there I was, a young woman telling them that no, it wasn’t my first day, this was my 3rd time going through radiation. And no, I’m not just on radiation, this is happening during a break from my chemo. Yes, I’ve also had several surgeries for metastases. Yeah, unfortunately, I’ll probably be in treatment for the rest of my life. My current life used to be the thing that kept me up at night. I never joined any cancer support groups because I was afraid of meeting someone as sick as I am now. I didn’t want to be the Scary Patient, but I had no energy to smile and nod and be welcomed to an existence I wish I could have.
The next time I visited the radiation center totally made up for it, though. My daughter came with me because we were planning to do some shopping for my husband afterwards. We saw on ambulance out front when we parked, and when we got in the EMTs lit up and offered to play with her. They were waiting for a patient in treatment on a different machine, and they let her get into the ambulance and turn on the lights and the siren. They answered all her questions and played paper airplanes with her while I was on the table. As a sick mom I feel like there are too many times where I cannot give my daughter the attention she deserves, and I always remember the times when strangers step up and help us. I managed to get their names and the number for their supervisor and am going to call and give them accolades.
On a positive note, I finished radiation today. At the end of treatment they throw confetti at you, which I had been dreading because I don’t feel celebratory about this. But my daughter came with me and helped toss the confetti and it was so special to share that with her. Then she made a confetti angel in the detritus on the floor and made the entire staff laugh. I think it’s the happiest I have been this month, watching her make fun memories of time with her sick mom.
Y’all, this week has been so hard. This chemo can cause late-onset side effects and I have been flattened by them. What is most striking about them is that these reactions are hitting me as hard emotionally as they are physically. I want to stop this treatment, never do it again, and if that means limiting my life, so be it.
I know this is not my spirit. This is not how I respond to a challenge. And it’s not the biggest challenge I have faced recently – the pain I felt this summer was worse than the past few days have been. But here I am, entirely wrung out.
My radiation started this week and I cannot possibly do both at once, so I am pushing my next chemo dose out until New Year’s Eve. I don’t mind that timing – it feels right to end the year destroying some cancer. I’ll finish radiation next week, so I get the whole week of Christmas in between to rest and enjoy my little family.
I don’t know how I’ll ever get this chemo every other week when week 2 is so awful. I usually like to get unpleasant things out of the way and don’t mind gritting through to the finish. But waiting for me at the end of these doses is just more chemo. If you’ve ever offered before expect to hear from me soon, I’m going to be leaning hard on my community for sure.
Finally I have started my new chemo regimen. I am so glad to have to underway, and am pleased that it is much less difficult than I feared. My previous regimen is considered to be fairly light, as chemo goes, so I don’t get any meds to tackle side effects as a matter of course; I have them on hand to take as needed. This one is known to be harder so I get pre-meds before the infusion starts, as well as a morning and evening anti-nausea drug. I’m doing a lot of sleeping and my appetite is low, but I am not feeling any nausea and I can be awake for a few hours.
My dad is here to help out this week and that has been incredibly helpful. He’s taking my daughter to and from school, cooking and cleaning up, running bedtime. My whole job is to take care of myself. It’s a real relief to be able to offload such a huge amount of work to someone else. It makes me think about the offers for help that I don’t take people up on. One reason is that childcare is where we could use the biggest help and my gal has a small circle of places she feels comfortable. The other is that it feels like a lot of work to organize help. Having a trusted family member come in and take over mitigates both those issues.
I asked a whole ago what you thought about hearing interviews from some of people in my life because, but I haven’t yet worked up the nerve yet to ask any of them. I’m still hoping that I do!
Finally, the link to my song is up! Ta-da! A couple neat details about it – the piano you hear is played by my daughter, and the line “I can bear the wait/weight” has my voice singing along with the professional. This song is so much more special and amazing than I dreamed and I am excited that now comes the sharing part.