Weekly Update #44

One of the things that is hard about continuous chemo is that even though I get the same treatment every 14 days, my body responds a little differently every time. I feel like I should be a professional at this regimen after 9 doses, but there are new challenges to address nearly every time. This round brought with it new levels of skin dryness – no matter what I did my entire face had the ghostly glow of dead skin sitting above the surface. My appendages have started to be hit, too, with little red patches on my arms and legs as well as continuing foot damage. I have been leaning hard on my lanolin creams and it seems to finally be getting better.

I am mildly allergic to both the cleanser they use to prep my skin for accessing my port and the adhesive they use to hold the port needle in place. I normally expose myself to the allergens rather than remembering to stop the nurse in time, but this time around my skin really reacted poorly. The nurse wrote it in big letters in my chart to avoid these next time and go with the supplies I’m not allergic to.

The other way this cycle was rough was overdoing the carbonated drinks. Plain water is tough to drink in the first couple of days post-treatment, so I mix it up with sparkling water. It was too much for my digestive system and I made myself sick. I felt so foolish for messing this up, I should have known that chemo makes my intestines more sensitive, I should have been able to drink more still water. I am trying to chalk it up as a lesson learned and be gentle with myself for not predicting this outcome.

We’re already talking about my next scan, which will hopefully be at the end of next week. Talking about scheduling the scan made me realize part of why exercising has been so important to me lately. When I work out I feel like cancer is not the entirety of my life. I have other things beyond it to focus my time and energy on. Putting a scan on the calendar feels like it reduces me to just a cancer patient. I am enjoying having cancer be a smaller part of my time and am going to work hard to maintain this balance.

Weekly Update #34

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.

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.

Sweaty Thoughts

Coming home sweaty from an outside workout always makes me want to write. It has been a very long time since I’ve been able to have this sensation. Exercise is part of how I got diagnosed – I had a pain in my tailbone and I thought it was from working out too hard. Through trying to address it I ended up at a GI and had the colonoscopy that revealed my cancer.

I tried to hold onto exercise as long as I could. During my first phase of treatment (daily radiation and oral chemo) I kept up my running schedule. I lasted two weeks before the treatment irritated my nerves and led to sciatica that sidelined me for the rest of that phase.

After my first surgery, I waited until I got the go-ahead from my doctor and immediately got on the treadmill. And then I mentioned it to a nurse who informed me that technically I was released for exercise but here were the risks . . . I immediately stopped and waited to heal further.

Finally, 6 months later I was in remission, fully healed from my next surgery and back in my running shoes.  And then we found out my cancer was back and I had my most intense surgery yet and had to heal for another six months.

Back in remission, I joined a class at the YMCA for cancer survivors, to help get them back into exercise. The 12 week program was amazing and I was back to not just cardio but weight-lifting, too. Then the back pain hit and we found out my cancer was back again again. Surgery, healing, and this time no clean scan followed.

I went back to chemo, and I still tried to walk occasionally. I had started daily walks with a neighbor while healing from the latest surgery and we tried to keep them up sporadically after I went back to work. But then another chemo side effect hit, another loss of mobility. Another surgery, more major muscle groups to heal.

That brings us to 2018. This was the year that I developed chronic pain and saw my mobility slowly decline. By August I couldn’t walk a whole block; it was too painful. Radiation relieved that pain and restored my mobility.

So here I am now. Trying yet again, knowing that it may be temporary. It’s not always easy to motivate myself to get out everyday. The fatigue makes it seem so difficult, it is like depression in that it tries to keep you from the activities that diminish it. Today looking back at how I have gone back to exercise over and over makes me feel proud of myself. And it makes me want to appreciate it while I have it. And I’ll tell you a secret: every time I go out for a long walk, my body wishes it was running, and I’m striving to get that back.