10. Symptoms & Side-Effects Since Diagnosis
I was going to title this post, “If you see my bum, can you please send it home?” but then decided that it was a bit weird. But, obviously not weird enough for me not to mention it at all...
I’m in my “integrative self-care” week, and head back into traditional treatment on Monday. I spent the day on Thursday at the integrative clinic, and have been thinking a lot about the symptoms that I’ve experienced since diagnosis -- from cancer and treatment -- and how the experience of these have been. I always come at these types of things from two perspectives, the one of actually experiencing it, and then the perspective of looking at it from the outside, to see how these two views might differ. And, I’ve also been taking mental note of a lot of things, so I can offer support and a point of view from someone actually having gone through it, if anyone else should need it. There are plenty of these symptoms that others have told me that they relate to, so these aren’t necessarily confined to cancer or to treatment.
Dave and I used to have a level of decorum in our relationship when it came to bodily functions. We didn’t talk about it much, and would use terms like, “my stomach is upset,” or “that dinner didn’t agree with me.” Cancer and treatment sends that decorum right out the window. I’ve had to tell him things that I’ve never told anyone! And it extends to receiving medical care too. At the onset of each chemo treatment after the appointment with the oncologist, you head back to the infusion room. Usually, you’re not the first in the room… you’re lucky to be alone when asked the question: “How are your poops?” and it’s usually before they ask you how “you” are. My response to the first nurse that asked me this was, “I’m not sure that we’re at that stage in our relationship just yet. If you’d like to reveal something personal about yourself, I might be more willing to share,” of course before mumbling, “they’re fine, thanks for asking.” Nope, it’s still uncomfortable when the nurse discusses how the treatment of the day will definitely give you diarrhea (I can’t even stand to type the word!) and that they’ll give you drugs to help alleviate it, but that it will probably make you constipated. Like I said, we’re just not there in our relationship yet. Bring back decorum!
However, before we restore all decorum, I do want to share the story of when I lost my bum. I’ll start by saying that the biggest fear of my life, right behind what used to be a fear of public speaking, is what I lovingly refer to as “old lady flat butt;” losing what I considered one of my best assets... get it? You know of it, the pants that hang down straight from the waist, that sag and wrinkle right where you bum meets your legs with no relief. This fear has single-handedly been responsible for many squats, lunges and runs around the neighborhood, in a quest to run it right out of town.
I was just about at my ideal weight when I took that trip to the ER. In the first three months after diagnosis, I lost about 15lbs/7kgs, which was a concern as I didn’t really have it to lose. At 124 lbs/56kgs, I was at the lowest weight that I’d been as an adult, a skeleton with chicken arms and legs. And cold! There is a fear when you’re first diagnosed that the food you’re eating causes cancer or supports cancer growth, so you analyze and second-guess most of what you put in your mouth. That, and the anxiety around the diagnosis itself…
With the cancer growing in my abdomen, I would visually take note of the way that my liver and spleen protruded from under my ribs by standing side-on in front of the mirror. For a while there, every few days the growth was noticeable. I’d been doing this for quite a few weeks, not spending too much time on it, but using it as a benchmark of how things were going. Much to my surprise one day, standing naked in front of the mirror after a shower, my eyes went from the side profile of my abdomen back to my bum. And it was gone. Poof! Just like that. Well, maybe not just like that, there had been many days of laying on the lounge and sitting around that prompted the departure. The space on the flip side between my hips and legs was flat, no cute perky curve to speak of. And I knew exactly where it went: Hawaii. It left to play in the surf, ride waves, and take long walks on the sand at dusk.
So there I was standing in front of the mirror with an incredulous look on my face. Please picture it, my worst fear realized -- I was the embodiment of old lady flat butt. I poked at it. No resistance. I jiggled it. Just like marshmallow! It was so very, very soft with no muscle tone at all. There I was standing in front of the mirror, jiggling my flat-as-a-board ass with both hands. Enter Dave, with a questioning look on his face, and a “what’s going on here, then?” I busted out laughing, caught red-handed!
Here I was, my worst fear realized… and... it wasn’t that bad. A shake of my head, one last jiggle and then the jokes started. “Butt, wait!” Funny in hindsight the things you hold onto as important. And you remember, this was in the midst of me falling in love with my body, this resilient vessel that carried me through minor, but painful surgery, myriad diagnostic tests, chemotherapy… and we were still standing strong. Just a bit of a different shape than previously. It's lucky I have a wacky sense of humor… and a loving community to share it with.
Returning now to symptoms and side-effects. I’ll divide it up into the good, the bad, the ugly and the beautiful.
Vein Irritation = Portacath: A very good thing that came from a very bad thing. With the painful vein burns from the GemCis chemotherapy, the decision to have a port inserted in my chest was perhaps one of the easiest ones to make. It’s an ingenious piece of equipment born out of a compassionate desire to help those needing long-term frequent intravenous injections. It makes my life easier, period. I put on some numbing cream before treatment and don’t feel a thing. During the days where it’s attached to low-release chemo, I can use my arms. And, it makes me feel like a cool ex machina Cyborg with an on-button. I freaking love the thing!
Skin: Doing lymphatic massage twice every day means I now have super soft baby skin. Bonus!
Appetite Loss: Separate to nausea, but often affected by it. It’s so important to eat, no matter what. It’s been an interesting process figuring out what works. When in doubt, hold your breath and chug a protein shake and be done with it. It’s not important if you don’t like it, don’t want to, or just can’t. You can’t heal without sustenance, so figure it out.
Deep Vein Thrombosis (DVT): The pain of the blood clot in my leg was bad enough, then there’s the having to take blood thinners for the unforeseeable future. And then, the experience of taking blood thinners during your menstrual cycle. This is something that I wish all of you -- men included -- could experience. Like a hemorrhage, but not. The upside is that it's over and done with pretty quick, after you feel like maybe you're now anemic after all that blood loss. Grossed out? Yeah, me too.
Eyesight: Chemotherapy also exacerbates eyesight degradation. I was right on the border of needing reading glasses at the time of diagnosis, and my eyesight has changed dramatically during chemotherapy. And, it’s gotten worse the more I’ve had. Easy fix: Get a pair of reading glasses that make you look like a sexy librarian. And done.
Fatigue: Yawn. Move your body. Trust me, it works. Take a walk before you take a nap. In any event, you’ve moved your body, which can only help. Also see Tapping below.
Hearing Loss: Chemotherapy can cause hearing loss of the upper ranges. Usually those high pitched tones that make dogs howl. I have tinnitus, which has been exacerbated by the chemo drugs. It’s like a universal one-toned orchestra in your ears at all times. You either learn to like the song or be driven crazy by it. Me? It’s kind of a catchy tune.
Immune System Supression: When your blood numbers have tanked, you have to be very careful about exposure to germs and nasties that could send you to the hospital. It means limiting your exposure to those friends you love sometimes, especially those with kids. Boring!
Nausea: Ugh, no one should have to stomach this. Pun intended. Take meds when you need to. Walking always decreases nausea. Also see Tapping below.
Memory Fog/Chemo Brain: It’s only a big deal if you remember it is.
Pain: Lesson learned to use drugs for their intended purpose when you need them, weaning off gently when you don’t. Taking a walk always decreases pain. Also see Tapping below.
Skin Issues from Immunotherapy: A mild rash on my face in the days following treatment. Increased sensitivity on the pads of all my fingers, it feels like the skin has been sanded off, making it sensitive to temperature extremes. Also interesting to note that the fingerprint reader on my phone no longer knows me.
Weight Loss: See ““If you see my bum, can you please send it home?” above.
Anxiety: This is a big one, especially around having scans done. Given a serious diagnosis, it’s natural that you’d feel it. What I just learned (from my very talented and compassionate acupuncturist) is that sometimes you can’t change it, you just have to live through it. You don’t need to overcome it. Breathe, meditate, take a walk, take a nap, watch a good movie. Do what you can to get through it, and it’ll be over before you know it.
Mouth Sores: FOLFIRI chemotherapy leaves my mouth feeling like I burned it on a hot cup of tea. Especially bad in the retromolar trigone region (yes, I had to look up what it was called), it’s the area between your upper and lower back teeth. It’s super sensitive to all things hot, cold or spicy. Easy fix: Don’t eat anything too hot, cold or spicy. Also, rinsing with mixture of clove, olive oil and warm water does wonders.
Nasal Discharge: Sounds enticing, doesn’t it? Let’s just say that I create a kaleidoscope of inkblot red butterflies on tissues most days. More interesting since blood thinners and immunotherapy, and brings a new meaning to the term, “body art.” Ewww, Cass!
Vasovagal Response: For me, it’s brought on by needles associated with stressful situations. I’ve never had a fear of needles, and have had 8+ each month since diagnosis. A vagal response comes on suddenly and feels like the worst hangover you’ve ever had in your life, but I haven’t yet fainted from it. The first time I experienced it was during the first CT scan after starting chemotherapy. The nurse inserted a needle in my arm for the contrast used to scan, but left it unattached prior to the procedure. I walked back from the nurses’ station to wait to be called in for the procedure. In two seconds flat, the pain in my abdomen shot up from a three to a seven, I started to hyperventilate and felt like a migraine was coming on. Alone in a patient waiting room, I panicked and hailed a nurse and was ushered to a bed to lie down before the procedure. I was asked, “Have you experienced any stress in your life recently?” Me: “Does stage four cancer count?” The second time was at my integrative doctor’s clinic, Dave and I had just had a 90-minute intensive appointment to lay out treatment next steps. The needle was inserted into my port, I was given fluids to start. Luckily I knew what was happening, and tried to will/meditate/breathe my way out of it, to no avail. It was two hours of feeling the most awful version of myself, until I slowly came back. Interesting that the first time was stress for a scan that hadn’t yet happened, and the second was a systemic release after a heady conversation about treatment. Afterwards, my integrative doctor said that sometimes these responses are a much needed emancipation of sorts. I completely agree.
Blood: I’ve fallen in love with the color of blood, mainly due to my integrative ozone therapy sessions. When blood is drawn, it’s the deep color of oxblood, and when it’s injected with ozone gas and fed through a fancy machine, it comes out the color of tomato soup and reinjected. Fascinating, and my idea of blood doping.
Breath: Through pain, nausea, anxiety, meditation, joy, etc., I’ve come to know my breath intimately and it is amazing. This thing that we take for granted, that is more urgent than food or water for our bodies. We’re becoming fast friends.
Connection: An increase in the quantity and quality of time with those you love. I have the perfect excuse to ask for time and hugs. We make time because it’s important, and it doesn’t matter why. This is exactly where I play my cancer card. Win-win.
Hair Loss: Depends on how you look at it. I’ve lost about two-thirds of my hair, and am almost at the point where I need to decide on whether or not to wear a wig. It’s a beautiful thing when your hair stylist, who is also an herbalist and kindred spirit, takes you into her loving scissored hands and gives you a beautiful new short ‘do. All the while laughing with you, encouraging you and reinforcing what that special ER doc told you at diagnosis -- it’s just hair!
Tapping: Works for pain, nausea, anxiety, behavioral change support. Tapping on pressure points changes the nerve pathways in your body. I highly recommend it.
I deal with these symptoms and side-effects as a means to an end... many of these things will lessen or dissipate when I’ve finished treatment. Interestingly, I’m rarely frustrated by them, although at times a bit grossed out. I am ready to be done with the smell and taste of blood. Most of the time, I think, “So what?” So my mouth hurts, there are ways around that. So my nose is runny or bloody, there are ways around that too. So I feel fatigued, nap anyone? Keep the big picture in mind, it’s the way through.
I’ve already planned my “hair growing back in” haircuts, the detox I want to do to heal all of these things, and the trip that I’d like Dave and I to take to celebrate when I’m given the all clear. A couple of months ago, I was waiting to see the oncologist before a chemotherapy session. As he got to the door to leave a patient he was seeing, I heard him say, “See you in six months.” I closed my eyes for a moment and felt wholeheartedly what it would be like for him to say that to me. It will happen, and be so freaking amazingly cool when we get there. It’s so important to have things to look forward to, and I am a planner after all.
Keep it real, people.