Let’s kick off this update with some scan news. Since I last wrote I’ve had a PET scan and an MRI to follow up on some potential new areas of disease seen in my April CT scan. Together they show that there’s no new (or any) cancer in my pelvis, which is really great news! In less awesome findings, it looks like there is a new spot on one of my vertebrae; we’ll continue to follow the bone met protocol for that and do targeted radiation to the area when it becomes painful.
Chemo #2 of the new regimen is under my belt and it continues to be such a quality of life improvement! I have energy, I feel good, I’m not in pain – it is such a relief and I am really enjoying it. I talked last time about finding projects to take on during this period and settled on one of them – getting back to working out. I am working with a trainer and we’re trying to conserve and build muscle and flexibility. It is incredibly humbling work, and I know it’s one of the best investments I can make in my time and energy to maintain quality of life in the future.
It seems like now that I’m not living in survival mode and have some resources available, some emotions have decided to step in and demand to be dealt with. I am feeling a lot of fear lately – having these scans done and reading the reports drives home how much my disease has progressed in the past year. My vanity is glad that I haven’t developed the face rash that’s characteristic of my new chemo drug, but I also know that there’s supposed to be a correlation between response to the drug and the rash so I am worried that my clear skin means it’s not working. After my time with this treatment is done it’s time for clinical trials, which is much less rope than I want to have.
Additionally, I have had some tough conversations with my family lately. After my latest trip to MD Anderson, when my daughter asked hopefully if my cancer was gone yet, I began to wonder whether it was a kindness not to share with her the chronic nature of my disease. I don’t want to talk to her about my death, but I realized that it was possible to share my new status without getting into that. So now she knows that I will be receiving treatment of some kind for the rest of my life. She hasn’t asked about questions about how long that will be and I am not planning to bring it up. Based on a conversation with my care team about their plans for managing my side effects in the future, my husband and I had a talk about my wishes for the future. I have a will and he knows what I want to the very end of my life; this was about the time when I will be in decline and how I want him to seek any help he needs. We also talked about my concern that at some point me being alive with bring him and my daughter more pain than comfort, and that I want to know if that happens. I’m not sure what we’ll do at that time, but I don’t want them to hide their negative emotions from me.
To try to wrap this up on a lighter note – I’m going to be on the local news on Sunday night! Sunday is National Cancer Survivors Day and I’m going to be interviewed about my experience as a cancer patient, and the work I have been doing with my new local cancer center. I am hoping that the segment will end up online and I can share a link here next week.
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.
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.
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.