The big question: How are you doing? Such a loaded question, with no simple answer. In some ways yes, I’m feeling better than I have in the last few months. In other ways I’m a complete shit show.
The last few months have been exhausting, scary, depressing, difficult and surreal. The first month of being on the chemo pills (Zalkori) was pretty difficult. The actual side effects weren’t SO horrible. I was extremely tired — exhausted, ALL. THE. TIME. That sucked, but really it just meant that I slept, a lot. I’d wake up to take my morning chemo pill and then make my way over to my papasan couch to nap for most of the day. I was still in pain most days, but I had some pain killers to help with that. Of course that caused other issues to my digestive system; diaherra and constipation would tag team my bowels with nausea rearing it’s ugly head and treat me to a technicolor yawn every now and then, just to keep things interesting.
Sitting AKA “cold-ass chillin” in my Papasan chair, where I pretty much lived in for most of March 2017.
I’d visit with friends and family on the phone or for short visits at the house. When I wasn’t sleeping I felt like I was walking around in a dense fog. Lots of difficulity getting things accomplished, forgetful, spacey, unfocused and just generally out of it.
Basically, I was just doing my best making it through each day while going to my Dr’s appointments. I have a local doctor here in Anchorage that I see regularly for all of my follow-up appointments. Keeping track of my blood levels, making sure that the chemo pills aren’t messing with my organs too badly. Of course the bills and paperwork from not one, but two hospitals, two doctors, are quickly piling up in my ever growing list of Urgent! Must Get Done! Shit.
The most drastic adjustment that I was dealing with was all the alone time. I always enjoyed my alone time. Happily spending my solitary hours reading a good novel, writing in my journal, listening to music and being creative. Now it seemed I had all this time on my hands, but no energy or interest in these things. I barely had an appetite for food — forget about hobbies. The isolation was an unexpected emotion for me. Then add in the depression that started seeping in the more thought I put into what I’d been told by my doctors. Stage 4 lung cancer, incurable.
As I digested all of this I just wanted a break, to wake up from this crazy nightmare. I felt a numbness to my surroundings. There, but not really present. Everyone kept telling me how strong I was but, I felt like a loose cannon ready to explode. Every single thing in my life seemed overwhelming and negative. I finally did fall apart. Called my doctor in tears after it became obvious to me that I was NOT fine. I needed some extra help. There was no way in hell I’d be able to fight cancer with all those messed up negative thoughts going through my head. Add another pill to keep the dark clouds away.
I started doing research online about cancer, reading books, cancer magazines, watching videos, and looking for some type of inspiration. A friend of mine had given me the book Crazy, Sexy, Cancer by Kris Carr. Kris was in her early 30’s when she was diagnosed with Stage 4 incurable cancer. Instead of rolling over and preparing for death– which is what quite a few doctors pretty much told her, she found a way to not only deal with her diagnosis but also live a fun, healthy, happy life. She’s a breath of fresh air and I totally dig her outlook on life! How to live after getting a life altering blow.
My research also kept repeating a message I was starting to clue into. Most cancer patients deal with fatigue and chemo brain. These were 2 of my biggest issues as well. The best way to deal with fatigue? Excercise. Easy right? Not exactly. I was barely able to stumble around the house and perhaps make it to an appointment (anything outside the house) or two every week. I felt like a total failure. I’ve always prided myself on being tough and independent. This is NOT how I felt these days.
I talked to my doctor about starting physical therapy. I had to start somewhere. It was great motivation. I tried to go to physical therapy once or twice a week. I was amazed at how slow, weak and easily fatigued I had become. I’m not used to taking things easy, this was an extremely humbling thing to come to terms with, but I did start to feel a little more energetic after physical therapy sessions. The brain fog also seemed to lift a bit.
During the second month of taking the chemo pills I started feeling a bit more like myself. Meaning that I could go to physical therapy once or twice a week, go to the grocery store, take a walk around the neighborhood or run an errand here and there in between my daily naps. I usually had 2-3 hours of a decent amount of energy most days, with a day or long periods of cold-ass chillin in between my hectic schedule.
I starting getting interested in Qi Gong. It’s another thing that kept popping up in my cancer research. Qi Gong has been credited with helping cancer patients deal with fatigue and chemo brain.
A couple places in Anchorage had Qi Gong classes available. I didn’t know what to expect, but I decided to give it a try. I found a yoga studio downtown that had a Qi Gong class once a week lead by Dr. Chan, she also practices acupuncture at Spring Wind Acupunture, LLC. I felt nervous and a bit silly the first class. Not sure if I was “doing it right”.
Dr. Chan, her husband and a few other students stood in a large circle. We did some deep breathing in a comfortable standing position. We were told to visualize light moving through our body while moving our hands in certain fluid poses. Dr. Chan explained the movements and ensured that we were engaged. I stopped feeling silly and really began to see the energy gathering and moving through my body. About 2/3 of the way through the hour long class I felt an intense wave of heat pass through my body. I felt like I had just had a pretty good workout. No panting and sweating, but more that afterglow you feel after a good workout. I felt something change within me and that was exciting!
I talked to Dr. Chan after class and we both agreed that Qi Gong would benefit my cancer treatment plan. I’ve gone to a few classes now. I honestly think Qi Gong has been the most noticeable change I’ve felt. I feel that it gives me more energy and more focus. I still get tired out easily. I’m learning how to find balance within my life. It’s not easy. Some days I feel pretty good and I’ll spend a few hours in the garden (gotta take advantage of that Alaskan Midnight Sunshine) and other days I’m too tired to leave the house and nap off and on all day.
Each month I began to feel a little bit better. More like myself most days. Doing things I enjoy. Taking walks and meeting up with friends, gardening, short bike rides, easy car camping trips, listening to local music and DJing on the local radio station — KRUA 88.1 — If you’d like to hear my show, Alpenglow Sessions, it’s on Mondays from 7pm -9pm. Tune in to KRUA online.
Following the Alaskan sunshine down the Turnagain Arm. April 2017
I recently had my 3-month follow-up appointment with my local Dr. here in Anchorage. I had a new CT Scan to compare to the previous scan done immediately before my diagnosis. Based on how I’ve been feeling the last few weeks, I was hopeful for a good report.
Indeed we did get some good news! The scan shows that the cancer has decreased in size, pretty drastically, well over half the cancerous cells are gone! I still get winded and breathe hard with exertion, but there is also less fluid build up next to my lungs. This is FABULOUS news! It shows that the chemo pills are working! They are targeting the cancer cells and killing them.
The bad news, at some point the cancer cells will mutate and become resistant to the chemo pills and we’ll have to try something new. No idea how long the chemo pills will continue to be effective. The average length of time is 7-10 months. We just have to keep monitoring my blood levels and how I’m feeling on a monthly basis.
In many ways, things are going pretty well. I’m still having issues like, keeping my shit together, getting things done, feeling extremely disorganized these days but I’m learning to ask for help with some of those things. I still have days that I just need to rest and take it easy.
I’m very interested in adding alternative treatments such as; CBD oil, acupuncture, massages, meditating, Vitamin C infusions and eating healthy to my cancer treatment. I truly believe all these things work together for the best possible outcome. Because my immune system is so weak currently I figure anything I can do to help make my immune system stronger will allow my body to fight the cancerous cells more efficiently.
As much as I’d like to return to my “normal life” – my life before cancer, it’s become obvious that my normal life is now the life of a cancer patient. My phone has a daily alarm to remind me to take my chemo pills twice a day, I have to do things in small doses, I’m as active as I can be, knowing that I will have to rest it off at some later time. I’m trying to eat healthy food, not because I’m hungry, but because I know it’s what my body needs to fight this cancer.
My fresh organic beet, carrot and lemon juice. It was delicous! I had no idea it would turn my poop that same shade of red for a couple days. Crazy shit!
When you see me around and want to know “How are you doing?” Please know that I’m taking it day by day, trying to make the most out of every day. Doing my best to deal with this major unexpected shift that has occurred in my life. It’s so crazy to think that this has all happened in the last 4-5 months. Every day is a new day. For that I am thankful.
McHugh Creek, just outside of Anchorage, Alaska overlooking the Turnagain Arm. May 2017