Weekly Update #30

It has been an exhausting week so let’s ease into the recap. I wrote a post for the Dell Medical School blog last month, to tell a little bit about my story in honor of Colon Cancer Awareness month.

I was lucky enough to get to attend CancerCon, a young adult cancer convention, last weekend. I didn’t go into the event with any expectations, I just wanted to take from it what I found naturally. The most helpful thing I heard relates to my post from last week, where I was wondering how I could maintain physical activity throughout treatment. I learned that the current recommendation for cancer survivors is to limit days of inactivity. Flipping the expectation from “be active this many days” to “try to minimize the days of inactivity” feels like so much less pressure, and I have in fact gone on two walks during this chemo week.

As expected, CancerCon brought up some feelings. Over and over at the event there was the message that my peers were finding a community that they had been missing, but that wasn’t my experience. I have such a strong community already that support didn’t feel new. And at times I felt left out of the CancerCon festivities – a reality when you’re in treatment and too tired to participate in the evening activities those in remission have energy for. I expect to keep processing the information I came across there, and I have so many amazing programs to follow up on.

This week was my last chemo before my next big scan. My ribs have been hurting a lot so I am nervous that we’ll find more spread there. I’m ready to get a plan for the next couple months and finish the process of transferring care to the Livestrong Cancer Institutes. More news when I have it!

Weekly Update #27

Things have been busy here!

I did go see a pulmonologist to follow up on my shortness of breath. He couldn’t find any issues with my lungs and suspects that when I get dehydrated my electrolytes get off and a small arrhythmia causes the breathing problems. I have an appointment with my cardiologist for the end of April to follow up on that possibility.

Last chemo was a lot. All I did that week was sleep and hydrate. It paid off, though, and I was able to take my daughter out of town for Spring Break. I was so happy to feel well enough to manage a solo trip together. We visited friends and played with them as well as visiting some great Houston attractions. I brought my rollator out on her maiden voyage and I can see how this mobility aid is going to be life-changing. The experience was so bonding for my girl and me, and it was nice to give my husband some respite.

Unfortunately I did have to spend an evening in the MD Anderson ER. Ever since a muscle seized up in my neck a couple weeks ago my port has been hurting. The pain was intense and long-lasting enough that I called the nurse line and they wanted me to come in to make sure it was in the right place. It is and there’s no reason they could see for the pain, so it’s probably musculoskeletal. Hopefully my neck finishes releasing soon and I can be done with the port pain.

This week is chemo 3 out of 4 before my next big scan. It’s going well so far. We added in a new pre-med, to mitigate aide effects, and I’ve been able to eat and drink more than normal. I’m hopeful I’ll be able to catch up beyond the things that need immediate attention in my coming off weeks 🤞🏻

Weekly Update #25

I’ve been busy and worn out lately and now I find myself with three weeks worth of news and thoughts to share. Let’s jump into it!

Results

Two weeks ago I visited MD Anderson for a follow-up scan and visit with my oncologist. The news was meh. There has possibly been a very small amount of growth of a few existing spots, though most of them were stable. My blood marker dropped precipitously, which is a good sign, and also confusing when taken with the CT findings. The plan is to do four more doses of the more intense regimen I’ve been on – if we see growth next time then we’ll move onto a new drug.

The CT also revealed that I have a small blood clot in one of my lungs and that when I thought I pulled a muscle from coughing last month, I actually fractured a rib. To deal with the blood clot I have to give myself daily injections of a blood thinner. The fractured rib is healing well and is a reminder that my bones are fragile and I need to be really proactive in shutting down coughing.

Logically I’m fine with all this news. I can handle four more doses of this drug, and I can suck it up and give myself tiny injections for 2 months. But emotionally it’s been much harder. I’m feeling tired of non-stop chemo and just of being a sick person. I wish I could take a break for a bit and come back to cancer refreshed.

Humbling

Yesterday I had the humbling experience of bottoming out at a friend’s house. After a few hours of sitting doing a jigsaw puzzle I became so dizzy I had to lie down. Eventually my friend had to drive me home because I wasn’t safe behind the wheel. This is a good friend who took it all in stride and was so loving, but it was so hard and vulnerable for me to experience. Not being healthy enough to sit upright for more than a few hours is embarrassing – I don’t think of myself as that sick, but apparently I am. Upon getting home I finally figured out I was super dehydrated, and I’m still trying to replace the electrolytes and fluids I lost.

Exciting News

And finally, to bury the lede, I’m ready to share some of the exciting news I referenced in my last post.

First up, I’ll be performing my song live at an event later this week. Here is the page with more information about the event. I’ve never performed the song live, but am really excited about the opportunity to share it and talk about how amazing it was for me to participate in the program.

And the other amazing thing is that I’ll be speaking on a panel at SXSW. Here is a link to the panel description – I’ll be speaking about my experiences as a cancer patient and why I think the new Livestrong Cancer Institutes model is going to be beneficial to cancer survivors. I’m honored that they invited me to participate and am pretty excited that I also get a badge to enjoy some of the rest of the SXSW festivities!

That’s plenty of catch up for today. This week I’m going to focus on self-care and try to be in a better place for my next infusion in a week.

Weekly Update #23

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!

Weekly Update #21

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.

Weekly Update #19

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.

Weekly Update #16

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.

Weekly Update #15

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.

Weekly Update #12

It’s my last chemo before my next set of scans. Usually by this time I feel nutty and short-tempered and worried, but it’s not really getting to me this time. I think part of it is that I’ve been so busy that it feels like they snuck up on me. I often have an off week between chemo and my scans, so this time I’m distracted by treatment. But I also have a piece of information I don’t usually have; we’ve been tracking my blood marker at home. It’s not a direct measure of my cancer, but it is related and has been accurate for me in the past. I’ve been able to see that instead of climbing, this marker number is falling. It’s making it easier to believe that these scans will go well. For me the goal is: no new cancer and existing cancer is stable or smaller.

The nausea has been a little better this time around. I’ve been able to hydrate more and stay awake and accomplish some tasks. I don’t feel like I can really take credit for it, it seems like it just happens some weeks and not others.

I already have my next chemo scheduled for the week after and it is a bummer. It has only been 4 doses this fall but I am already ready for a break. I know I can take one whenever I want, but I would like to hold out for when I need one, not just when I am feeling grumpy about feeling bad.

Weekly Update #8

Let’s start with this week’s terrible doctor visit. I had a follow up with my pain doctor yesterday, to see how I was doing after the nerve block procedure they did a few weeks ago. During the follow up the fellow kept trying to argue that my pain was improved by my procedure and I kept telling him that no, it wasn’t. My ribs feel better because of radiation. I could get through the day without pain because of my meds. I got 1 new sleeping position, but I also got new pain from the procedure that makes it hurt to lay on my back – which was previously my only comfortable laying down position. The new back pain seems to be a muscle spasm so massage should take care of that. Next up he diagnosed me with carpal tunnel, which I had just noticed was an issue a few days before. When I asked for a treatment plan he told me to look up carpal tunnel relief on the internet. Luckily I have some other resources to figure out the carpal tunnel. And this terrible appointment just joins the long list of them.

In better news, I turned 35 on Saturday and it was a really lovely birthday. I had a lot of snuggly family time, and the gifts from family and friends made me feel so seen and loved. I’m still in a really emotional place, as I have been sharing here lately, and not in the mood for a big celebration where I would have to fake smiles. Quiet and intimate was exactly what I wanted this year.

The chemo is going okay this week. I’m more nauseous than usual. Even though I didn’t do the driving for my 6 hour trip for the terrible appointment it must have tired me out because I slept 12 hours last night. Oh, and I was able to go on a 2.5 mile walk on Monday! I didn’t have time yesterday but I am hoping to get in another walk today. They make me feel so good and are a great place to work through the big pile of feelings inside me.

I leave you with a question. I have met so many amazing people during these years – the eternally cheerful parking garage guy and the volunteer masseuse I talk mysteries with and the chemo nurse who manages to connect with every patient. I am pondering doing an interview series with these folks. Would you be interested in that? Let me know!