I remember during Chemo Class they told me that chemo tends to behave the same each round, that it is common for people, while still unique, to have similar experiences of each round. So, if round one was tough, round 2, 3, etc, would be similarly tough. Or if round one was pretty manageable (they told me most people tolerate my kind of chemo really well), then each round that followed would also be pretty manageable. Despite the ‘cumulative’ effects that they also warned me of, they said I would likely handle it ‘just fine.’

I held onto that predicability throughout infusion day of Round Two on 10/30 of 17. Nothing up to that point (literally all year prior) had been predictable….so I was grasping for anything concrete. While Round One wasn’t great (all things relative, obviously), it was tolerable and I was able to get back into work and my taste buds came back and my nausea was minimal around day 10 in the 21 day cycle and overall, minus the horror of having my head shaved and true baldness ensuing, Round One was checked off my list and if the rest followed suit, I’d be okay.

It wouldn’t be until several days in that I would learn that I would not, in fact, get to hang my hat on predictability. Lovely. Yet another thing ripped out from under me, another thing out of the norm, another thing unreliable; the comfort that comes with preparation, impossible. And as it would turn out, not only was Round Two different in every way, it was, “Amber, you’re critically low on potassium which is highly dangerous,” different. With my birthday only a couple weeks away, I wondered if I’d make it there.

Looking back three years later, the memories of how I felt and what I was thinking come really easily. I remember sitting in the chair, “knowing what the day would look like and feeling confident in my ability to get through the next many days because I’d done this once before,” and leaving the infusion center unaware of the ICK that waited for me. Yet. I’m here now. The gift of reminisce. The gift of memories. The gift of surviving. The gift of living.

*Post 940

Round 2 Infusion Day :: 10/30/17 :: Post 63

Round 2 infusion. Check.
Round 2 Neulasta. T – 1 day.
Round 2 side effects. T – 1.5 days.
Round 2 good days. T – 10 days.

Here we go.

Today was interesting. It went faster than Round 1, we were home by 3 instead of almost 6. Anabelle came to experience the first part of the day and watched everything with such intent and many questions. The nurses thought we broke the rules by bringing Annie even though I got special permission for her to just be there for the very first part of the day (it made for some drama that I took really hard). There was still a whole bunch of waiting to even get set up with chemo. The day felt like old hat even though I have only done it once before. It was so busy with so many other patients but only two of the six doctors were working today. Each of the six nurses took care of me so I had a new nurse each pre-med, saline, and drug switch which I both liked because I like interacting with all of them but it also made me feel like an afterthought. I ate Chipotle for lunch. I had an hour long conversation with the LCSW on staff and we talked shop while I also got to process with another clinical professional…she validated my feelings and she took away some soundbites of mine for future use. It was hard to relax and be still with everything going on around me even though I really wanted to…and the steroids I have to have probably don’t make it any easier to feel quiet and still. The time went so slow and so fast all at the same time. There is so much to know about how to manage having cancer well and yet I kind of want to do it just like I’m doing it….it’s beyond overwhelming. I had a whole bunch of things with me to keep me occupied and yet between all the nurses, the distraction and people watching, the conversation with the LCSW, and texting a few people who checked in on me, I did not do any of the things I actually took with me today…on one hand it felt like a wasted day but on the other, I was where my feet were and I let the day be whatever it was with no pressure to make it anything else. I didn’t wear a wig…again. It was some of my favorite weather…again. It’s strange to sit there and not feel sick (minus a massive headache due to the drugs) and yet acknowledge how sick I am to have to be sitting there. Knowing the side effects are going to hit in just a day and a half and last for what feels like forever…ugh. Seeing little tiny 1/8 of an inch long hairs all over my hands after I touch my head is just as hard as losing all of my long hair. Trying to sleep tonight with a $14,000 patch on my side and not ripping it off when I switch sides (I might sleep in my chair tonight…which will bring back some hard memories). Waking up tomorrow morning and 1. Deciding what to wear on my head because I’m in a season where an accessory is fake hair; 2. Trying to go to work and facilitate a training all day; 3. Going to PT tomorrow evening knowing it is going to hurt like hell; 4. Experiencing a whole new hard tomorrow because every day has brought new hard stuff to experience.

This journey……….is hard. In.Every.Way.

Just Enough :: 10/30/18 :: Post 412

As I was driving to yet another appointment this evening, I felt so tired. Tired from constant intense vulnerabilities….and no matter how much “practice” I get, that just doesn’t get easier. Tired from adjusting hours at work to make up for my absences. Tired from not sleeping very well at night, every night Tired from hurting all of the time. Tired from navigating a perpetual unknown. Tired from this all being the only known, the only routine, the only normal

While I’m to-my-core-tired, I’m so deeply grateful for so much in my story and I’m grateful that I wake up each morning with enough to get me to the next.

October 30 of 31 :: 10/30/19 :: Post 775

It is so weird to get further and further away from the treatment phase of cancer…I don’t “look” like someone who has this in their story. My hair is at a length where it looks like it’s on-purpose rather than the forced-baldness of chemo. I have eyebrows and eyelashes back where they were once completely gone. I have body curves that would make it appear like I haven’t had body parts removed because of cancer’s invasion. Color has replaced the gray in my skin from the poison coursing through my veins. And clothes cover the multitude of scars…

It’s weird to walk, literally every step, smack dab in the center of cancer being my story, when the next person over has no idea. It’s weird to see life through the now-permanent filter of this part of my story when only I can see through it. It’s weird to live my life from this place, to have my entire identity changed and yet most people have no idea. This phenomenon is so hard to explain…What is such a huge part of who I am not be known to someone unless I tell them is not only weird, it’s incredibly difficult. I feel like I am betraying the transformed-me by not saying anything about how I became transformed. But at the same time that it feels really difficult for me not to say anything, it also feels really odd to figuratively (or literally) wear a sign that says “I have cancer”……

I wonder how other people with cancer feel……

Breast Cancer Awareness Month…

…Day thirty – I read a line in an article today that said something like, ‘Cancer will touch everyone at some point in their life…’ and man, I did NOT like how it felt to read that. I feel like the tone of the article minimized the deep pain and grief of cancer because it’s just so common, that it’s a fact of life and everyone should just expect it. Um…I would never wish this on my worst enemy. One should be careful to not take the sentiment, “you’re not alone” too far…