Weekly Update #52

Last week I had a PET scan and the results were good! The tumors in my lungs continue to be stable or smaller. I am so pleased that we’re still seeing a response to this current therapy regimen. There was a small bit of progression on one rib, and a suspected new area on my spine, so I will do a follow up MRI to assess those and probably do another round of radiation in a few weeks. I tolerate radiation really well, and they’re short course for this sort of thing, so I’m not too bothered by adding that on for a bit.

My doctors really worked hard to get me results on my scan day which was really wonderful. I had brought a book to pass the time between appointments and had just settled down in a quiet spot when someone else sat down nearby and started watching news footage of a school shooting without headphones. It was more stress than my body could bear at the moment, so I went to the front desk and asked if they could put me in a room early. It was a little thing for them, but made such a difference in my experience to spend the next two hours in a quiet, relaxing space rather than gritting my teeth. My husband was able to join me while we waited for results and it was fun to pass the time playing pictionary with him.

One of the reasons I’m so relieved about this good scan is it means we keep on my same regimen for the next two months. I will be on known, predictable treatment through the holidays. Last year I had a scan on the same day, actually, and moved to a new regimen. That one was incredibly hard on me – we had to reduce my dose because of how poorly I tolerated it and I was pretty miserable through my daughter’s winter break. I remember how sad I was thinking that Christmas might only be downhill from here, and instead this year I am on track to feel even better. I am so grateful for the gift of quality time with my family.

I also get to keep up my half-marathon training! Yesterday I did 6.5 miles and the long runs are continuing to feel great. I’m going to ask at my young adult advisory board is anyone else is planning on running the race, as I think it would be fun to set up a team so we can have matching bibs.

Chemo continues on schedule for this week, so I am off to get some more fun things done in the part of the week where I feel better!

Unequivocally Good News!!

I just got home from the oncologist’s office where I got my scan results and they’re really good! No new cancer, nothing grew, and in fact several tumors shrunk. It has been a very long time since I’ve been able to share an update like this and it feels so good to do so.

I also have to comment on how much better the experience was than at MD Anderson. There I always spend at least half an hour in the waiting room before being brought to a room where I will also spend at least half an hour waiting for the doctor. That whole time I am alone and my spine is hot with fear. Today I saw my oncologist in the hallway while I was checking in and she let me know right away that the results were good so I didn’t have to wait and worry. My husband was there with me to celebrate. I was back at my house within 15 minutes. I am so appreciative of how great today was.

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 #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 #13

Hello! This week was scan week so I come to you with updates.

Unfortunately, I did not see the results I hoped for. There was a bit of new cancer – a new spot in my lungs and a new spot on a rib – as well as growth of an existing spot. So next up we add a drug to my chemo regimen and do some radiation for the rib spot. The hope is that this will get me stable again and in 2 months I go back to maintenance.

I love my new doctor so much. I felt panicked when I first heard that there were new spots, but she did a great job of putting it into perspective. This is an incredibly small amount of disease progression for 9 months of maintenance chemo off and on. She doesn’t want to go in guns blazing forever, just knock this back and then let up. I feel like she cares so much about me and my quality of life.

That is not to say that I am psyched about these results. My blood marker was dropping and I felt so good going into this scan – it’s really frustrating that the information was inaccurate. And knowing that I do this heavier chemo and back to maintenance somehow clicked for me that, right, this is my life for the forseeable future. This isn’t even a marathon, because while they feel long they do eventually end and you get to rest. I’m not sure how long I’ll be able to keep up my spirits knowing that there’s no recovery period coming. My mental health plan is to keep taking it one day at a time and take opportunities to fill myself up when they arise.

I mentioned a few weeks ago that I had made a connection to visit a local colorectal cancer research lab. This week I joined the lab for their Thanksgiving potluck and then toured the facility. I used to be a biologist, so I loved getting to hear about their research and seeing where it happens. The lab leader is an oncologist and while she’s not officially my doctor, she wants to keep in touch about my treatment. I feel really fortunate to have this connection.

I’ll end by saying that I spent the afternoon helping a friend in need. I had planned on relaxing after this hectic week, but instead I showed up when a friend was hurting and I could help. And it felt really good. It’s so true that helping others is a great way to pick yourself up.

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!

Weekly Update #5

Well, it’s about time for some good news! I got home yesterday from a great trip to see my doctors.

First up, I met with my new medical oncologist to discuss the results of a new scan. And it was all good! There’s no new cancer and the existing spots were either stable or smaller. I’ve only had 2 doses of chemo between the scans, so I’m pretty excited about that. In addition to loving the scan news, I love my new doctor. She is warm and an excellent communicator and made it clear she will always be honest with me. I asked her about my outlook and she is incredibly hopeful. She feels like I have had a relatively small amount of treatment over 3 years and just to be where I am is incredible. We have a lot of options still available to us. She also said that there’s no statistic that applies to me, I keep defying the odds, and she is optimistic.

It is so overwhelming to hear good news. It’s a little scary to hope, opening myself back up to have those hopes dashed. I’m slowly processing the news and hoping as the feelings really hit me I’ll feel more comfortable in them.

The other good news from this visit is that I had a pain procedure, a nerve block. While my pain is super low now, it’s partially because I don’t do any things that would make it hurt, and there are plenty of things I’d love to do that are on that list. The biggest is that I can only lay on my back, which is not a comfortable sleeping position for me. I’ve resisted this procedure because in theory they only last 3 months and I’m loathe to sign up for a procedure I need 4x a year for the rest of my life. But I really miss laying down to sleep and relaxing my body. So we’ll see if this improves my quality of life.

So it’s back to chemo every other week and a scan in a couple months. The next couple months are super busy in our personal lives, so fingers crossed that I feel well enough during this treatment period to enjoy it all!

Weekly update #4

It is belated but this week’s update is here.

This is another week of anxiety. It is nearly time for my next scan and that always gives me a big spike. At first I was worried about whether the scan would be approved in time. In July when I last had this kind of scan it took many weeks of calls and waiting to make it happen; I only knew for sure that it was on an hour before it was time to start my drive. But the same day that worry started I got the letter from my insurance that it had been approved.

After that was resolved I wondered why I was still so riled up. Was it just a habit at this point? Then today I said it out loud – I left my doctor as I got the news from the last scan that my cancer changed from curable to treatable. I haven’t yet had a conversation with my primary doctor about the plan. And I finally get to ask those questions – what are we doing for the rest of this year and what are the possibilities for the longer term? Of course I’m full of stress and worries. I have a rough idea of what is likely from discussions with nurses and other doctors but it will be big to have an official discussion.

I started a scary and exciting project today. I’m working with Austin Classical Guitar to write a song about my cancer. They have a similar program for pregnant moms to write lullabies for their babies, and I’m the trial run for introducing this program at a new cancer center in town. I was nervous when I went to the first meeting but it was so productive and thrilling. I’m ruminating for the next week and then we get to start working on the music.

And of course, it’s mid-September so the crafting instincts have kicked in. Hoping to knock out a couple big projects in the next month. It’s nice to feel well enough to set and expect to make progress on non-essential goals.

Weekly Update #2

Let’s start with the big news – the radiation is working! We haven’t done a new scan, but I can tell the difference in my pain and it is incredible. Just before radiation started I was at my worst. I thought about every movement I made, trying to aggravate my side and arm the least. Sometimes I lay down too hard. So much energy went into tolerating the pain that even in the same room I wasn’t present in family life. It sucks to say to your 6 year old that she gets to pick one time for Mommy to get up this morning and does she want to use it on this request? Addressing this pain has been life-changing, and the radiation is supposed to keep working even after I’m done with that treatment, so I am hoping things continue to improve.

This is one of those off weeks where I feel on top of the world. A quiet Sunday morning of knitting in my favorite chair while listening to Marlowe play in the bath with a background of piano music is exquisite. I want to hug all my friends and tell them how much I appreciate them in my life. I feel like I am doing the living it was so hard to do last week. It is not always this way; some rest weeks I feel off balance, exhausted from the boomerang of sick to well and back again.

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Oh, also this happened this week. I am wildly in love.