Who really wants things to be normal anyway? I never did, but then I didn’t really need normalcy before. This normal isn’t new or normal in the typical sense, but it is my normal as I live with metastatic cancer. And live well I must say. To do so I’ve needed to develop many strategies and work arounds. And I’ve had a lot of help. But it’s all definitely worth it. Quality of life really matters. Maybe some of my strategies will work for others.
Learning and remembering your energy limits is important. Kind of tricky too as it’s a moving target. There are days I have great energy and some that I have a deep, deep odd tiredness. Most days though I wake up, get myself going and go strong until noon. After that? Anybody’s guess. I learned this week that I’m no longer able to push through it like I always did in my old life. When I’m done, I’m done. Kind of like a baby. And that is okay! I prioritize and sometimes have bonus time for something more.
“Love what you do. Do what you love.” I’ve always believed this makes great sense. Well there’s lots of things I love, but can’t do anymore, or not yet in this “normal”. That’s okay too because I’ve discovered I love lots of things. So I’m focusing more time on the ones I can still do (like photography, being in nature) and maybe just adjusting how I do them. And I’m learning and doing new things too! Things like writing a blog! I sure have more time to read now, and I love to read pretty much anything. I have four books going right now; one fiction, two health related, and one nonfiction nature-based. None on education -that’s a first!
Shortness of breath, my huffing and puffing. Haven’t really found good strategies except to go slow and steady. Not likely to do much running this spring, but I am determined to do more walking in my new OrthoFeet sneakers.
And then there’s the digestive system issues. When I first started crizotinib I took a few different meds before my system could tolerate it being there. Imodium went with me everywhere because I never knew when I’d have a bout of diarrhea. And no advance notice usually, so pads or disposable underwear, extra clothing, disposable wipes. Carried my backpack everywhere. That doesn’t seem normal, but it became routine. In addition to the clothes I try to remember to carry food that I know I can eat in case I can’t eat what is available. With Queen Lorlatinib, my current targeted therapy drug, the digestive system issues are much less for me at this time. (Fingers crossed!)
Lorlatinib brought some new challenges that I’ve referred to earlier. One, neuropathy, is common for people on chemotherapy drugs and for people with diabetes. As much as I love to go barefoot, I cannot now, even in the house. Anyone who has an inkling that they have neuropathy in their feet should start wearing shoes or slippers ALL the time. I learned the hard way. If you have hand neuropathy, try acupuncture – helped me tremendously. I tried some of the ointments and cannabinoid oil, but I haven’t found something yet that I can say gives me relief from neuropathy. Wearing gloves for any work and even driving, and keeping my feet well padded have worked best. And, I just don’t stand still for long periods of time or do lots of peeling veggies as those as things that are sure to bother. I’m so fortunate that I don’t have to try to work. Luckily I’m a good sleeper, so it doesn’t bother too much at night. Oh yes, and ignore the feeling that a tick is crawling on your ankles. Or maybe not. Probably just neuropathy, but best to check. I spend a lot of time looking at my ankles!
Weight has been an interesting problem over the past 2 years, four months. After the fire in the fall of 2015 I decided to only buy what I absolutely needed for clothing. Then as I became sick I began to lose weight. By the time I started on crizotinib (March 2016) I’d lost more than 30 lbs. and I’m only 5’0″ and wasn’t ever terribly overweight. Between cancer taking its toll and radiation doing a number on my esophagus, I had a few months of not eating much, eating mostly liquid form foods, etc. And, as far as clothes went, thanks to radiation I couldn’t stand anything near my neck or wear a bra. So my daughter bought me some size small stretchy pants and v-necked loose tops. That’s been my preferred wardrobe ever since. I eventually gained all that weight back when on crizotinib.
Weight gain is common with these drugs, but I had no idea what I was in store for with Lorlatinib when I began it July 2017. Everyone I know on this targeted therapy drug (still in clinical trial) has had this problem to some degree. I started out gaining a pound a week. Yes, one pound per week! Eeek! And it was not simply that I was feeling better and eating more, or that I wasn’t able to exercise enough. But, thanks to the stretchy clothes I just moved to medium, keeping in mind my “fire resolution” and bought only what I needed. I was beginning to feel uncomfortable with the extra weight. By January I had gained 20+ since beginning Lorlatinib. July to January, as much as my pregnancy weight gain. From March 2016 to January 2017 that’s a 50 lb weight gain. (Both pregnancies combined!) Without even trying to lose the 30 or gain back the 30 plus 20. Finally, in January the trial nurse mentioned someone having success with a paleo diet, so I tried that. (I wrote about it earlier.) Paleo works for this! I immediately lost 8 pounds and haven’t gained more. As long as I feel “well” I can do this. As I’ve learned, weight loss from cancer and treatment AND weight gain as a side effect are common. I work with and around this by eating well and wearing my comfy clothes.
Finally,while trying to understand this “normal”, I think maybe the greatest lesson and the greatest blessing that I’ve gained from this journey is that it is more than just okay to let or even ask others to do things for you. I couldn’t do anything for someone else and very little for myself when I was so very ill. That’s when I began to truly understand what gratitude and expressing your gratefulness does, not just for you, but for those you’re grateful to. People who care want to do things to make your life easier and brighter when you are struggling with something in life. I still want to do everything for myself, but I don’t feel badly asking for help or letting someone else do what I don’t have energy or strength to do. I feel loved and grateful. And I like to look for things I can do that will brighten their days.
Late this week I go to Dana-Farber for scans, blood work, brain MRI, EKG, and oncology appointment. Dan will drive and wait patiently for me every step in the day. I will post an update, hopefully by the weekend. The prayers,positive energy and thoughts of all who follow this cancer journey give me strength.
Baseball and softball have started for the children. Fun times for grandparents. Finding joy in the everyday every day here with Dan, the family, the 3 little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.