I listened to a podcast last night about connecting with my body post cancer treatment. I hated it.

I was nauseous the entire time, feeling my heart ache and my body cringe. Tears in my eyes and tension in my muscles. I was angry as I was listening to it but I forced myself to keep at it, “You can do this, you can get through this…You’ll be stronger for having not given up. It’s brave to keep listening.” And I did. I listened all the way through, all 40 awful, emotional minutes of it. I didn’t give up but dang, it was really hard. 

I found that I was resentful towards the presenter which, really, is quite irrational. She was just fine, a kind voice and said things saturated in empathy, clearly having done the work to be able to speak on the subject. That said, I judged her harshly…. “Did you ever have cancer?,” “What do you know?,” “Even though what you just said was accurate, I don’t want to admit that.” And all while, nodding my head in agreement feeling validated that, “At least someone gets it…” Oh the tension. Oh the absurdity. 

At its conclusion, I yanked my earbuds out of my ears. I tossed them away from me as if they were actually a part of the problem, my body, mind and soul discouraged, my being spinning in confusion and overwhelmed with both literal and figurative all-over pain, livid that there is so much work to do. 

And the truthful, vulnerable, unhealthy admittance – I don’t want to do it. At least for right now.

*Post 907

What a Trip :: 9/28/17 :: Post 31

One of these days I am going to sit down and write out a full description of each and every medical procedure I have had in the last 8 weeks. Amazing the sheer number of I’ve-never-done-this-before places and feelings I have had. (and by the way – I hate that place. I’m getting used to it for sure, but I still don’t love it.)

And there is oh so much more of that in this for me…

Another thing I’m amazed by – the vastness of the health care industry. And I’m not just talking doctors, but nurses, patient registration, receptionists, volunteers, wig specialists, nurse navigators, schedulers, acupuncturists, nutritionists, physical therapists, sonographers, surgery assistants, the guy that brings the food…..oh how the list goes on and on and on. Granted, the human body IS a complex creation that blows the mind and even within systems of the body there are layers upon layers of further complexity. So, this isn’t all that surprising. But to a girl that never really went to the doctor….for a girl that actually didn’t like them….there is a funny irony that I have now had to put my life in the hands of so many. And they each do something different. That, too, is amazing to me. It kind of goes with the “smallness” that I feel in all of this. I’m nearing 50 different specialists along the way and I still have 2 appointments tomorrow and the whole chemo/radiation/rest of the journey ahead of me to add to that number.

Amazing, also, is to look back on 8 weeks and see all that has transpired. It’s sad. It’s uncomfortable. It’s devastating. It’s hard. It’s scary. It’s stretching. It’s faith-challenging. It’s patience-forcing. It’s trust-testing. It’s relationship-revealing. 

Today was physical therapy and my echocardiogram. I love my physical therapist – she is a cancer survivor herself, has a lot of great practical tips, and knows her stuff. She said I’m healing really very well and that was encouraging to hear. She also told me some stories today of how other patients of hers have embraced baldness and I feel it was helpful to hear as I have that hurdle yet to cross. As that day approaches, I find myself accepting the inevitability of it, hating the reality of it, and sitting in uncertainty with what *I* will feel like going through that. I also talked to Hana today, my wig specialist. I scheduled my appointment with her to go and select a wig…that is going to be a tough day. I liken it to how this past Tuesday’s port placement appointment was – the reality that precedes an even harder reality; a necessary step in the overall process; a much more difficult day than I expected; a day that will be seared into my memory for forever. Something very “simple” that has so many thorny branches to weed through. 

Then we had to wait, for like 3 hours until I could check in for my echocardiogram. A medical procedure I’d never experienced before…I had no idea what to expect. My hospital patient intake person (do not know the actual title of the person) and the person that escorts me to the correct department (again, no idea their title) were the same ones that I met 3 weeks ago when I was there for my mastectomy and when I was there Tuesday for my port placement, and today… We all laughed at the fact that we are now on a first-name basis. There is such humor and sadness in that. One of them even said, “hey, my bestie is back!” It’s so interesting in this chapter of my life that I can sit and laugh with people under the circumstances in which we know each other. Again…such light and dark in the same space. Weird. Fascinating.…What a trip.

Finally, I met Patrick, he was my echo guy. He was nice. He explained that an echocardiogram is basically an ultrasound of the heart. It measures the productivity of the heart and it measures how the muscle itself looks and works. Ah, so that’s what it is… Interesting. So, once again, “undress from the waist up. Put this gown on. Open to the front. I’ll be back in a moment.” (I made sure to repeat those instructions back to him so I remembered and didn’t make the same mistake that I’ve now made twice with putting the gown on the wrong way.) I got it right this time… He then instructs me to lay on my left side…and to put my left arm as far as I can up under my head. Ummmmmmm, I just got drains out yesterday, I haven’t laid down on my side since before surgery, AND I have limited range of motion in my left arm. Poor guy…he had to get creative. All that said, I managed to survive that and it makes me think that I can start sleeping in my bed again! (Yup, I’m giving it a try tonight….and I’m pretty excited about it. I’ve got my back-up plan if it doesn’t work – the chair – but oh man do I hope the bed works out. I’ve missed being near my husband.) Anyways, poor Patrick also had to be creative because sound waves don’t move through tissue expanders and through air so he was working at all different angles with the ultrasound wand and I had to hold my breath….a lot….to “get my lungs out of his way.” At one point, even, the ultrasound wand was right near my belly button and he was taking a picture of my heart. So interesting…

Anyways, I find out results sometime this week or next. Results that will state if my heart is healthy enough to withstand chemo. Yup…that was news to me today. Didn’t even know of that hurdle. Of that potential curve ball. Great. Now, I have no reason to believe that my heart isn’t healthy, but still. The unknowns. The uncertainties. The wait-and-sees. 

And I get to have another ultrasound tomorrow. A much less fun one… Stupid cyst. Stupid vaginal ultrasound. Stupid spreading my legs for a stranger to shove a probe in me as if the road I’ve walked hasn’t been mortifying enough. Stupid waiting for results that may or may not be favorable. Stupid possible curve ball….again. 

I hear “Chemo Teach” is incredibly difficult. That’s tomorrow, too. I imagined it to be so even before it was confirmed to me by a friend. More education on something I never saw coming…never saw in my story…never expected. One real step closer to a reality I never wanted. What a way to end a realllllllllly busy week. I know it’s necessary and I know I will appreciate having walked that through, but I know it will be incredibly difficult. 

I said it once already. What a trip this has been. And it’s so far from over. 

My heart (while I’m hoping it’s pictures were model-perfect) does not feel picture perfect. It feels heavy. It is holding a lot. It is navigating difficult tensions of joy and sorrow, laughter and tears, trust and desperation, peace and anxiety. It is learning how to hold what is present today with expectations of what is coming. It is battered from where I’ve been and yet has to gather the strength required to prepare for the battle ahead. 

Am I Onto Something? :: 9/28/18 :: Post 380

I was able to process something with my friend today… Something that brought more awareness to my current struggle to describe my feelings. 

Yesterday I was wrestling with how to truly celebrate the good news of clean pathology reports. Today, when several friends and colleagues commented on that good news, I again really wasn’t sure how to respond. Of course a part of me wants to celebrate this victory, but another part hesitated to do so. I didn’t want to make my friends feel bad and (to maintain transparency) I didn’t want to be judged for my lack of enthusiasm…. but I didn’t know what to say. 

Am I unable to celebrate? Am I a negative-nelly? Or is it the reality of daily (for 5 years) tamoxifen, three more surgeries and several years of follow up blood work to blame for me not able to really feel confident? 

Towards the end of my work day, while talking it out with my friend, it occurred to me that I was having a hard time with all of this because of the most recent developments with this hysterectomy. 

At the start of all of this, the hysterectomy was elective… My choice… My way of controlling what I could about cancer’s recurrence… An end to a chapter that could have been (but wasn’t) the end of the book..

But then all of a sudden, in a matter of seemingly mere moments, that control was removed and I was back in a very difficult space. A holding pattern of dreadful waiting. A halt in everything that I thought to be and trying to keep my head from playing out all of the worst what-would-bes. An unknown that triggered incredibly visceral emotions because, well, I’ve just trudged through (sometimes unsure I’d survive through) some of the most treacherous moments.

It occurred to me that I found it very difficult to celebrate the good news of clean pathology reports because I sit here uncertain of how many other difficult spaces, holding patterns, halts, would-bes, unknowns and visceral triggers lie ahead for me. My routine follow-up blood work may, in fact, always hold an element of this insanely awful place… 

And as I write this all out, there is a slight part of me that is wondering if this survivorship chapter of the story might end up being more difficult than the treatment chapter… 

I dunno. That kinda seems like a crazy thing to say… 

I guess I’ll learn if I’m on to something there. 

Hungover :: 9/28/19 :: Post 743

Ugh. I am not feeling well tonight…and haven’t been for the majority of today.

I truly believe there is such a thing as a ‘process hangover’…. Yesterday did me in.