What It Feels Like

Part of my reason for keeping this blog is so that other people diagnosed with, or battling, cancer have a place to come and be recognized. Like Cheers. But with the crappiest justification for solidarity ever. A club you hope you never get into, but whose membership numbers will only increase as time marches on. So, if you ever find yourself here, let me tell you- the cancer club is a powerful thing. It makes those of us on the inside feel a lot less crazy and hectic. It is a powerful brand of validation- to know that others truly understand the mental, physical and emotional world in which we have been living. 

It is why spending time with the First Descents family was so meaningful. For the first time in months, I felt like I could let my guard down and be sick. Or at least, it was deeply and sincerely understood what “sick” is. At home, in a lot of ways, I can’t really be fully sick. I have a business to run, clients to serve, a family to look after. Cancer is so big and so hard that it really feels like everything else in life should stop and give way to this enormous life-altering glacier that is plowing through your world. But it just doesn’t. Life presses forward. Your husband throws his back out. The dryer breaks. The dog goes missing. (All of these things have happened in the last few weeks and are so ill-timed that it’s just a circus now.)

So I want to share what it’s like to be in the end stages of chemo to keep the door ajar on this world. First, let me just say that chemo is cumulative, meaning, it gets worse as it goes along. I found Adriamycin to be absolutely terrible. However, now that I am in the last weeks of Taxol, I’m hating that pretty intently, too. The skin on my arms is red and scaley. It’s cracked and it hurts. Nothing heals at this point so I have to wear gloves or socks that I’ve cut the toes out of to keep the skin slathered in neosporin and covered up. The skin around my eyes is the same way, but not as severe. It looks like this:

I am rocking a moon face and some full body swelling, to boot. I also have neuropathy in my hands and feet. This means I’ve lost some coordination with my fine motor skills (think: handling pills or other small items) and that a lot of the sensation in my fingertips is dull or dead. I have wounds from climbing that are very very slow to heal, so taking care of myself demands more attention than what I am used to. I have to use caution with bandaids because the adhesive alone will tear and damage my skin, compounding the original issue. It’s a lot of work for slow progress.

I am also suffering from a lot of pain. About 4 days after an infusion, the pain starts to come on and can be so rapid in onset that it’s actually startling. The pain comes from deep down (maybe bones?) but also manifests as sensitivity to touch. It’s everywhere but doesn’t really feel like it’s coming from anywhere specifically. Heat, like a bath or heating pads, helps a lot but that’s getting harder to manage as the weather warms up and as my skin continues to deteriorate. I am the last one to take pain medication but I now rely on it to get me through the pain days. 

My mouth is swollen and has sores in it, making eating or brushing another painful event. I recently discovered the joy of using Elle’s toothpaste- a delightful berry flavor that doesn’t burn my mouth like all other mint pastes do. I’m not joking when I say this has been an incredible improvement in my life and I am really excited about it. 

Also, the bacterial infection I had has come back as well, so I’m back on the antibiotics and probiotics and anything else we can think of to help me get over the hump. It’s a little scary to be fighting such an aggressive infection and my body is very fatigued at this point. My energy is low and gone are the days where I was hiking or walking for miles on end. I am pretty firmly planted between the couch and bed, and expect the duration of chemo to look like more of the same. 

All this, but still, my spirits are fairly high. There is peace in accepting things as they are, and I am comfortable slowing it down to take care of myself.  Sometimes it gets a little sad or frustrating to miss out on things. It definitely gets hard to feel unwell. But the days are going quickly, and sooner than later this will be behind me. I’m proud of how far I’ve come already, and I know each day forward is another little victory in the war. I just have to keep putting one foot in front of the other, and I will. 

Please know your love and support has made all the difference. Thank you for being such an amazing community. With you, I will definitely be victorious.

Give Em’ Hell.

8 Comments Add yours

  1. Hilary says:

    Your inspiration and strength is amazing Katie. Your girls are so lucky to have a mother and role model like you in their lives. Your words give us all strength! I’m reading everyday and keeping you in our thoughts always. You will kick this thing to the curb, you will get to the finish line and you are DOING IT! ❤

    Liked by 1 person

  2. PillowHell says:

    Amazing strength and candor, and generosity to share. Most excited for what is ahead… finish line in sight. Stick with it, we are here with you!


  3. Jen Dwyer says:

    We are rooting so hard for you! Your blog is incredibly honest and touching and insightful and grounding. Stay strong Katie!!!


  4. Kelly McCloy says:

    Katie you are quite an inspiration!

    Liked by 1 person

  5. Whipple says:

    Hey love.I can’t do anything for your physical pain, but I do want to tell how amazing you are. Sharing photos of how your cancer has impacted your physical functioning and appearance is fucking varsity brave. You will put this behind you, and be the stronger for it. Cheesy sentiment. I know.

    Liked by 1 person

  6. contactflora says:

    These updates have been amazing. I haven’t commented before, but I’ve been reading your posts. You are an inspiration! Your hope and strength and perseverance are the most beautiful thing ever, and they stand out beyond the scales on your arms and face. Sending love and positivity.

    Liked by 1 person

  7. Stacey McQuade says:

    You are an amazing and strong person Katie. You continue to inspire and give perspectives to all of us for what’s truly important. Much love and blessings to you my friend ❣

    Liked by 1 person

  8. LOUISE ROWAN says:

    I am still hear …… reading and praying. That girl from Indiana you swear must be nuts!! Give em hell!!! Be as tough as you can be today and let tomorrow be another day. xoxo weezie

    Liked by 1 person

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