Uphill From Here

The lowest lows must exist. I get that. And for the first time in a while, my highs are amplified by those lows. I got great news today. The blood clot I developed from the portacath is nearly resolved!

A few days after my portacath placement in early June, my arm turned purple and swelled. They discovered a clot that extended into my armpit from my chest. I went on Xarelto, a blood thinner, and have been on it since ever since. The medication doesn’t have side effects other than easy bruising and one should avoid cuts at all cost. As someone who is poked with needles almost weekly and anticipated several major surgeries, the blood clot and associated blood thinners were a huge concern.

It is the painful and ugly relief map of veins in my sundresses. It is the thing that pulled me down from the silks. It is the ongoing, nagging, threatening thing that made chemo and surgery far more scary than need be. I hate that blood clot. I really do.

Before my last surgery, I had to do what is called a Lovenox Bridge which is another type of short-term blood thinner that must be injected (by me) into the chubbiest part of my belly twice daily. Like so many of the trials of the last year, this task was a low low. It hurt. I looked like I had been run over.

My next (and hopefully final) reconstruction surgery is scheduled for February 9 so if the clot had still not resolved, I would have to do another round of tummy shots for 10 days. I don’t think I have to now! This also means that the risks associated with my upcoming surgery are far less. This is a high high.

Also, as fast as it started, my hair stopped falling out about 5 days ago. I don’t want to get too excited because, well…who knows? But, a do feel that a huge weight has been lifted from me. I’m that much closer to being a normal person again, whatever that means.

Could there be an end in sight? As long as there is an end, I don’t mind it being uphill.

 

KMAGYOYO

I’m frustrated. My hair is falling out. My eyelashes are thinning again. I don’t know why. I’m months beyond chemo and surgery. I should be past this! It makes me realize how not past this I am. That dark cloud hovers in my peripheral.

I tell my cancer team about my hair loss. They recommend I see a dermatologist. This is puzzling. By puzzling, I mean infuriating. They sure were good at making my hair fall out. But, making it stop or growing it back isn’t interesting to them. It is the ultimate in passing the buck. It is KMAGYOYO. It made me cry.

I get it. They did their job. I’m not going to die. But now I have to live.

For the first time in my life, the sensations of life and living are distinct. I always used to live to the fullest. I really did. Life and living were one in the same, an effortless marriage I took for granted.

Now I’ve had the experience many only have towards the end of their life…the slow decent into just hanging on, not knowing if you’ll get to come back. Chemo really takes you there. It is unspeakably difficult. The recovery is snail paced. I’m impatient.

The doctors solved my one big problem but created a million other, smaller problems that I’m now trying to sort through. And I realize that I’ll be sorting through them with just my worries and my calendar. Time, it seems, is the only real cure.

Usual Unusualness

Today I’m in the chemo room for Herceptin treatment. It is an easy appointment compared to the TCHP treatments I finished in September. It reminds me how far I’ve come but also how far I have to go.

I treat these days as if nothing is happening. Just a quick little appointment, like running an errand or taking a long lunch. I don’t prepare for it and often forget it is on the calendar. Today, I happened to have a staff meeting at the same time. I joined the video conference from my chemo chair while the nurse was taking my blood through an IV in my arm. It should seem weird but I’m trying not to let it.

I took my phone off mute for a moment to give my update and something magical happened. Someone “rang the bell!” It was her final chemo treatment and my whole team heard it.

I burst into tears. It is my Pavlovian response to hearing bells now. I cried harder when my colleagues started cheering and ringing the bells they have at their desks to celebrate my final chemo treatment. I wish the other woman could have heard them. I’m sure she would have loved to know strangers on a software company video conference across the whole country were rooting for her.

As soon as I think I’m getting used to things, I realize just how unusual this is. And then I’m reminded how lucky I am to have to have such an unusual life. There is no normal anymore. But the new whatever it is is a beautiful thing.

I’m a hot goblin

I haven’t read anything more honest and inclusive of my own cancer experience than this article.

I’ve read it 5 times and cried twice. Thank you, Emily Alford.

Let’s (You) Talk

captureAt my final chemo treatment and bell ringing ceremony I was presented with a certificate of achievement. It delightfully proclaimed I am now qualified to talk about my experience with anyone who will listen. I’m afraid I jumped the gun. Now, I’d prefer to listen.

I have been talking, ad nauseam, about my experience and feelings for 5 months now. I’ve spent enough time in my own head and I’d really now like to know what everyone else has been thinking but not saying.

I realize withholding things from me before was polite, even necessary at times. I wasn’t capable of hearing it at first. It is one of the reasons I didn’t tell very many people until chemo was complete. But, things are different now so lay it on me.

I want to comfort. I want to commiserate. I want to tell you everything is going to be okay. I’ll scream and yell and curse this thing that happened together if you want to. And I know there are a few of you who want to. Because this thing didn’t just happen to me. It happened to us.

We can also talk about something else. Trust me, I’m so ready for a new topic.

Knowing what to say to someone who is sick is really difficult. (This might help.) Expressing fear and anger or confessing what you need is hard also. I feel the same! But, getting back to normal requires one of two things from all of us: address the elephant or ignore him. I’m ready to do either.

Chemo…check. #nailedit

I don’t know how you thank someone for all that I’ve been given since May 17 when I found out I had breast cancer. I’ve never needed this sort of help. I’ve never been offered this sort of gift.

How do you thank the girl that took my hand without any hesitation and led me to the scariest moments of my life, organized everything, and then orchestrated the plan that would save my life? She sat between me and cancer like a rock breakwater, shielding me as best she could so that I could withstand all that was coming at me. She heard information that I was too afraid to let anyone else hear. And while I know it must have been impossibly hard, she never let me see anything but the solid, steadfast confidence she had in us. If there is anyone that is brave in this situation, it is her.

How do you thank someone who signs up for the most emotionally exhausting task of looking after a sick person for months?  Dropping her own plans and completely devoting all time and energy to getting me well is the epitome of selflessness. Comfort is hard to come by when you’re recovering from something as traumatic as cancer and it can’t come from just anywhere. She was the only one for the job.  I can’t imagine the agony of watching a loved one suffer. But if I ever am gifted the chance to take care of someone in need, I hope I do it just like her, with patience, grace, humor, and vodka. I guess moms never get a day off.

There are so many people to thank which I’ll get to in time. But, when I rang the bell last Wednesday I rang it for these two women. These ladies have held my hand and filled my water glass and wiped away my tears and even helped me masochistically freeze my own head. These beautiful, strong, amazing women got me here. I can never repay them but I’ll spend the rest of my life trying. Thank you, thank you, a million thank yous.

A sound so wonderful

I drove by Zilker Park last night and saw the preparation for the ACL Music Festival. It is my most favorite thing. Music at the festival is among the most precious memories of my life. The sparkly red guitar sign is a symbol of the thing I look forward to most every year. I felt such confusion as I passed it because it didn’t mean much.

At the end of the day of my first chemo treatment, a bell rang out in the silence and the room erupted in applause and cheering. No one had told us what that meant but we looked at each other knowingly and joined in the celebration. I remember a few tears slipping out, both for how happy I was for her and how far away it seemed for me. She was done.

In just 2 days I’ll be ringing that bell in the chemo room. There isn’t a word in English that accurately describes this sort of anticipation. No music festival could ever be more exciting. No music could ever sound more beautiful.

Saying “I can’t wait” is simply not enough. That being said, I can’t wait.