Weekly Update #33

Last week I was so eager to start my new chemo regimen until it snuck up on me and actually happened. It went much better than I expected, thankfully. I made it through without any allergic reaction and the aftermath of this regimen is easier on me than my old one. I was back to being awake a couple days earlier, and getting back two days of energy every two weeks is a big deal.

I have been able to be more active lately and I am enjoying it. My medications make me extra sun-sensitive so my giant sun hat and I are enjoying walks around the neighborhood. Last night my daughter and I met up with friends for an after dinner swim and it was so delightful, I want to do more of that this summer! I can feel the difference in my pain and energy levels when I am able to keep up even light exercise so I am trying to stay motivated to keep it up.

Speaking of my pain, it has been gone since chemo last week. This has happened before, we guess that the steroids I get before chemo also reduce the inflammation that is bugging me. I am still doing PT and I have a meeting with a local pain doctor next week, but I am hopeful that perhaps regular chemo steroids plus activity could keep things in check and I can avoid lots of pain meds or a steroid injection.

The combination of feeling good, having energy, and not being in pain – and still having a week until my next chemo – is very unfamiliar. I feel like I have been just barely keeping up since I started on Folfiri in December. To be able to take a breath, to have energy that I get to choose where to direct, I am finding it confusing. I feel frustrated that I am not getting things done, and also at a loss for what it is I am supposed to be accomplishing. I find goals hard these days – I like to set them and make plans to accomplish them and I don’t know how to amble towards them, accept non-linear progress towards them. I don’t know how much to push myself when all in isn’t an option. I guess I need to spend some time sitting and figuring out what it is I do want to work on this summer.

Weekly Update #32

We got my new chemo regimen settled last week, but I haven’t had a chance to start it yet because the infusion center didn’t have a chair available for long enough until this Friday. I’ll be there for 7 hours, reading and napping and watching my way through. Part of why it will take so long is that most patients have an allergic reaction to my new drug the first time they take it. So they preload me with Benadryl, wait for it to kick in, start the drug, watch for anaphylaxis, give me more Beneadryl, wait for me to get better, and then start the drug up again, continuing until we get it all in. For most patients this only happens the first time, so fingers crossed. I am definitely not looking forward to it. I’ve never had an allergic reaction before and even though I know my nurses will be watching me closely, it is intimidating to know it will be coming.

Other than prepping for my new regimen this week has been about pain. My pain levels have been increasing for a while and have yet again reached the point where it’s constant and really interferes with my sleep. I am dealing by taking every pain med I can safely take together, timing things so I get the biggest help overnight when it hurts the most and I need sleep. It is frustrating to once again be in so much pain, especially when I don’t know what caused it, just that it’s related to my ongoing chronic pain in my ribs, and that I can just set it off and then spend months suffering. I’m back at PT which has historically been my most effective treatment, but that will take a while to kick in and fix things.

I have also been spending this week going through the resources I brought back from CancerCon. I knew that would be my most valuable asset from the trip, and it is good to go through it and find programs that I think could be helpful. One recurring theme is that there are opportunities to write and share more of my story in other venues and it’s something that is feeling really appealing right now. I’d like to be braver and go deeper into what is happening – not just report the highlights but really share more of the true and ugly. So I am pondering topics for different venues and trying to work up the courage to start contacting people.

Weekly Update #31

Last week was scan week. The results were pretty meh. Two things in my lung got a tiny bit bigger, though everything else in my torso stayed stable. It’s not really much more cancer, but it makes it clear that my current regimen isn’t keeping me stable, so it’s time to move to a new one. I met with my oncologist today and we finalized the plan – I’ll stay on one of my drugs, Irinotecan, and add in a new one, Cetuximab. The latter is a biologic which is nice because it doesn’t come with the same chemo side effects, but unfortunately it does come with one big one – acne-like rash on my face, neck and chest. Nearly everyone on the drug gets the rash, and there is evidence there’s a relationship between the rash and my response to the drug so unfortunately I want it. I am pretty bummed about it – all my side effects so far have been things I can choose whether to share or not, this will be my first publicly visible one. I’ll be getting some medicines and creams to help manage it, so hopefully it won’t be too bad.

The other thing we saw on that scan is that there is potentially a new metastasis in my sacrum. I was diagnosed because of tail bone pain – the tumor must have been pushing on it because as soon as I started radiation/chemo and it shrank the pain went away. So, while we are going to do more imaging to verify, I am pretty comfortable assuming that this is a new bit of cancer. The chemo will help, but I’ll also do some more radiation to address it.

One thing I enjoyed about this visit was the difference in how the doctor there presented the information to me. Historically MD Anderson writes my treatment plan and my local oncologist executes it. This time around it was clear from the way the doctor spoke that my new local oncologist is the alpha – he had some ideas he was going to email her, but that she’d make the final decision because she’s the expert. I feel so so good about my decision to switch local oncologists. And, I’ll be able to do my scans at home in the future and cut out these bi-monthly trips to Houston. The drives have been getting physically hard/exhausting, so I am not at all sad to give them up. I’ll still maintain a connection with MD Anderson, but Livestrong Cancer Institutes is definitely my main office now.

Overall I feel surprisingly okay about the news. I’ve been able to frame it as information about how I’m responding to this drug and that has been really helpful. Based on the genetic profile of my tumor we have reason to believe I will respond well to this new regimen, so I am ready to get started and give it a try.

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 #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 #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 #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.