And right on time, the energy drop. This round of chemo is hitting me hard – I’m so tired and nauseous. I’ve been able to mostly sleep my way through it and am hopeful it will wear off in a day or two.
I was talking to someone this week about how dizzying it is to oscillate between treatment and off weeks, especially as a person who craves routine. It occurred to me that maybe I can have more than one routine, for the multiple states I can find myself in. Stretches and a walk on days that’s feasible, and napping and crosswords on days I feel rotten.
Latetly I have been very thankful for the kittens we adopted this past summer. They are sweet snugglers and it’s so nice to be able to pet a soft, warm friend when you need a distraction. I wish they were less interested in my knitting, but mostly I win that battle.
Back to mitigating side effects for me!
This week has been a surprisingly energetic one. It’s the kind of energy that I had forgotten what it is like to have! I can focus on a task for several hours at once, I can run a morning of errands and still have energy to play with my kid after school, I can walk 2 whole miles and it’s just a part of my day, not the whole thing. I have really been enjoying it and taking advantage of feeling productive. I don’t feel less when I cannot achieve things, but I do feel great when I can.
I am not sure where all this energy has come from. I got less chemo than normal this past cycle – one of my cats disconnected my chemo pump for me early, and when I went into the office the next day they decided it wasn’t that much I was missing and to just skip it. I’ve been exercising more this past week, and it feels so good to move my body again. I am itching to up my activity beyond walking, but unfortunately during my terrible cough I injured one of my abdominal muscles and it is still healing.
What I am proudest of during this energy boost is that I don’t feel sad to know that this is temporary. I am grateful for it, and am enjoying experiencing it. And it feels really okay that it will ebb and I’ll find ways to enjoy that experience.
I have felt grumpy this whole week. I think a lot of it is willpower depletion and frustration around the need to resist the urges my body is sending.
This chemo comes with a combo of numb tongue and loss of taste, as well as nausea if I drink too much at a time. The combination means that my usual favorite drink of water is highly unpalatable. When I drink I feel the absence of part of my tongue and it is disconcerting. My brain wants me to drink a giant fountain Sprite, it is sure that this will be so hydrating and refreshing. And while there are certainly worse things, I should really be drinking that much water, not soda.
My body is filled with other cravings right now, too. Not for the kind of food that will fuel my body and help me feel better, but for the fat and sugar and salt that will cut through my numb tongue and let me taste something. And I have these cravings every other week and I am so tired of trying to resist them and make good choices.
The pain that I am luckily mostly free of these days is the type that says “Stop stop stop if you keep going you will seriously injure yourself”, but that signal is a lie. It gets better with use. It goes away if I keep at it. But it’s so hard to keep going when your body is signaling so clearly that what you’re doing is bad for you.
And frankly, just showing up for chemo is taking willpower these days. I’m so tired of the up and down. It’s disorienting and dizzying. I feel always just off, unable to find my footing. I guess this is my work these days, to figure out how to be in this ever changing space and be okay with it.
After having the worst chemo of my life at the beginning of December I worked hard to prepare for the remaining doses I needed – I spoke with my doctor about reducing my dose and reached out to my local community for support and made sure we had the foods and medicines on hand that were most helpful. I was due for my next dose on New Year’s Eve, so I set the expectation for myself that the first six weeks of 2019 would be a black hole. This is the week where the worst side effects were due to hit, and as each day I remain unscathed my view for the immediate future gets brighter, I feel a little less sucked in to chaos.
One of the positive parts of the rough past month has been how aglow I feel in love from my community. A story I believed about myself for a very long time was that I was too much, and I needed to tamp myself down to be liked. I thought I was weird and that people were doing me a favor by being nice enough to be my friend. Social relationships did not come naturally to me as a child, and I didn’t understand how to get the closeness I saw among my peers. As an adult I put a lot of work into learning how to be a good friend. It has been incredibly powerful, as I have been sick, to look at the evidence of how loved I am and break down these old narratives.
So, today I just feel thankful. For feeling better than I feared. For the support of my village. Sometimes I feel like people look at my life and feel so glad it isn’t theirs, but I feel incredibly lucky for so much of it.
I made it to chemo this week! I’ve had a terrible cough so I had to get a chest x-ray first to rule out pneumonia, but my lungs were clear enough to go for it. The cough has gotten much better since, so I’m wondering if some of the meds they give me to make chemo more bearable are helping clear up my lungs, too.
Y’all, I don’t laud my husband enough. Finding him was the luckiest thing to happen to me, and I am so grateful to spend my life with him. He makes me laugh everyday, he is a true partner, he is such a loving dad, and he is a generous person. Earlier this week I was in tremendous pain at bedtime and miserable because I wanted to sleep but couldn’t put any pressure on my torso. He sat with me and we read mini-mysteries for 90 minutes until all the meds kicked in and I could rest. I love him so much and wish I could give him more.
It’s a new year. I used to like to make productivity-type goals: knit X things, workout Y amount – but those aren’t appealing in my current state. I’m nearly out of room on my shelves of unread books, so I’d like to get through some of those. And I want to learn more about and start a meditation practice. Seeing them typed up they seem like sneaky productive goals in disguise. Cancer has changed me in many ways, but at my core I still am the same Christina.
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.
I missed my first update last week. I took a break from most electronics over the Thanksgiving break.
I still have not started my new chemo regimen. Twice I have gone into the clinic only to find out that it is not yet authorized and I have to wait for the insurance dance. It is incredibly frustrating to keep waiting. This new regimen feels like a wave that is about to crash over me, and I want to get out of its shadow and get it over with. I want to know how destructive it’s going to be, so I can plan how I’m going to deal with it.
It’s also stressing me out about my schedule. My dad is coming to help out next week, and I would really like to be getting treatment then. I currently have doses 2-4 scheduled in a way that works for my family, and I need dose 1 to happen next week to keep that schedule. I have never had issues with insurance denying treatments so I’m not worried about that, just tired of waiting for the process to run its course.
I have another thing that I cannot get off my mind. Since April I have been on an advisory board for a new clinic being created here, the Livestrong Cancer Institute. Their goal is to treat cancer in a whole new way, very patient centered and including social and emotional issues in their care. It is a thrilling project to be involved in and I’ve found it incredibly fulfilling. What is stressing me out is that they’ve invited me to be patient zero. They’re starting with GI cancer and an adolescent/young adult focus, so I am exactly their target audience. I would really love to give up the travel to Houston – it would be so great to have my husband be able to attend some appointments with me, have surgeries locally and have friends visit me, remove disruption from our lives from me being gone so often. And the care at the new cancer sounds so comforting. But . . . it means giving up the care team I’ve built up that I love. My new oncologist at MD Anderson makes me feel so safe and happy. I know the name of every person I interact with at my local oncologist – from the phlebotomists to the schedulers. Can a start up environment provide the level of care I need? I can’t commit myself to worse care. I keep making up my mind not to switch, and then I go to help out at Livestrong and I don’t feel able to let the question go. In a few weeks I’m going to go act as myself in a mock operations day, pretend to be a patient considering switching to Livestrong. I am hoping that being in the space, with the team, and acting it out will feel clarifying. Either I’ll feel at home or I’ll know that it’s not time to switch yet.
In good news, the song I have been working on in a pilot program is done and it’s incredible. As soon as it’s up on Soundcloud I’ll put up a link!