Weekly Update #29

Use it or lose it has been a theme for me lately. A frustrating, disappointing, taunting theme.

I currently have three injuries I am working on rehabbing. On my left side, sciatica and aching ribs. On my right side neck muscles so tight I wake up lopsided. The ribs and neck, in particular, have been getting worse each chemo round, as my sick/tired posture seems to be the source of these injuries. So I have to deal with them, or continue to become more gnarled two weeks at a time.

I went through menopause as a result of my initial treatment. For a long time I’ve joked that it’s one of the few benefits of cancer, but in reality it has a bunch of downsides. I’m on the road to osteoporosis, and the lack of estrogen has bummer side effects. So I have to supplement now, or risk losing the ability to be intimate with my husband.

I am mad that I require so much maintenance. This body has already lost so many abilities, and now I have hours of work to do each week to keep what I have left. I have gotten serious about it during these two weeks that I have the most energy that I’ve had all year . . . how will I keep it up when I inevitably feel rotten again? Currently it is fear that’s driving me, but that’s not a good motivator long-term. I used to love exercise, but these activities don’t feel good or set off many endorphins.

This is why I call myself a full-time sick person, I have to devote most of my time to simply caring for my ailing body. Maybe I’ll try some tactics from when I could work full-time – setting a schedule or using a Pomodoro timer. Maybe I can make these into goals instead of obligations, ways to see progress in a life that feels like a slow decline. If I figure it out I will definitely share, and if not you’ll hear about what hasn’t worked for me.

Weekly Update #28

In a lovely change of events, I am having a really great off week right now. We added a new pre-med, as they are called (the not-chemo drugs they give you before chemo to help mitigate the side effects) to my regimen this past time around and it has proven to be so helpful. I was better able to eat and drink last week, and by Monday of this week I felt like my head was above water for the first time in months. The nurse said we’d make it a standard part of my regimen from now on.

Another reason I am having such a great off week is knowing that I get two of them in a row to allow for fun travel. I’m currently in Dallas at a fiber festival, aka a knitting convention. It’s a weekend alone in a hotel where I take knitting classes all day and then rest my brain and relax all evening. Next weekend I am heading to Denver for CancerCon, a convention for young adults with cancer. I haven’t felt like one for a long time, but in the cancer world I am a young adult for being diagnosed before the age of 40. I have never been to a big cancer event before, so I’m not sure how I’ll feel in the moment, but I am hoping it will be a place where I feel seen and can connect with peers.

After that it’s my last chemo before the next scan! As I mentioned last time, I ended up getting a CT at the MD Anderson ER over Spring Break. As I was secretly hoping, they compared that scan to the one from February and found that things are looking stable. That was after just two doses of chemo, so my hopes are really up that at the official scan I’ll hear that things are stable or smaller. If so, my doctors would be able to lower my doses to maintenance levels, which are far easier to handle. If not I’ll move to a new chemo drug I’ve never tried before; I assume it’s harder because there’s a reason they try it after they know my current drug isn’t working.

So, that’s what I’ll be up to over the next month. Hopefully the net will be lots of fun times and good news!

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 #26

It has been another busy week!

Last week I was super dehydrated from my treatment and it took a visit for IV fluids to get me back on track. I figured out I was dehydrated because I was short of breath after walking for just a minute. Right after getting the dehydration under control allergies hit, so my breathing problems continued.

I did manage to rally and go to my singing event and I am so glad that I did. Several of my friends surprised me, which meant so much to me. I saw a lot of tears eyes in the audience as I was singing, which I hope means my song really translates my feelings.

I further rallied and taught at a knitting retreat this weekend. It ended up being the perfect place for me to mostly rest, but also enjoy some wonderful company. Many of the same women attend each year and it was a pleasure to catch up with new and old friends.

I was due to get chemo this Monday, but I was still short of breath so instead I went for a scan to get to the bottom of it. Unfortunately the scan didn’t reveal the cause, so I’ll be following up with a pulmonologist as well as my cardiologist to keep an eye on it.

During the knitting retreat the shortness of breath made it hard to get around the hotel, and I realized it was time for my first mobility aid. Today my rollator arrived – it’s a walker with a seat. I don’t need the walker part really, but always being able to have a seat with me will make a huge difference and make some events accessible to me that otherwise I’d have to sit out. I expected to feel sad to reach this milestone, but instead it’s a relief that I have this option. It’s tough to truly appreciate mobility until it’s a struggle, but now I can appreciate anything that will restore some to me.

Today I am finally feeling better. I am looking forward to my SXSW talk this weekend. I’m told that if you visit the Livestrong Facebook page that the event will be live-streaming – this Sunday at 12:30pm CDT. I hope some of you will be able to turn in and hear me tell a bit of my story!

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 #24

It’s the week before my next scan, which means my anxiety is up. I generally don’t spend a lot of time thinking and worrying about the scan itself, my worries tend to present themselves in other ways. This weekend I found myself interrogating my husband on what he planned to buy at the grocery store before suddenly gasping and saying, “I don’t know why I am doing this.” We ended up having a good laugh about it and I’m trying to be gentle with him and those around me in the mean time.

I am still feeling frustrated with the disconnect between my energy levels and my abilities. My energy is high again, but between a pulled abdominal muscle, sciatica, and a spasming neck muscle there’s not much movement I can do that’s safe. Even the stretches for the latter two ailments irritate the former.

This week I have had two exciting opportunities fall into my lap. I’m going to keep them close to my chest for a bit longer because they’re so exciting that revealing them feels like it might make them disappear. It continues to be both humbling and fulfilling to have opportunities to share my story.

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 #22

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.

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 #20

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.