One Rib Part Removed, Not For Adam

Surgery was on 10/2 and this past week has been a daze of pain medications, rest, and not much else. In the process of navigating this week, dear friends have brought meals, checked in, driven, and then I lost my phone and got appointment dates mixed up and felt sheepish all around. Apologies.

Here’s what we know: the surgeon thinks he got all of the tumor, and part of one rib was removed. Part of my latissmus dorsi muscle was also removed, and I’m going to have permanent disability in my right arm. I already feel some numbness, some difficulty moving. Thankfully I can type and write with some small difficulty but it can be done. My lung capacity is slightly impacted but this should change with physical therapy. Walking 1/4 mile tires me out, but dad gum I’m walking the block. I’m adding a few more steps each day. Slow but sure.

Triple negative breast cancer has a high risk of recurrence. That is a fact I must face squarely. But we’re hoping this surgery gave us some extra time – months, years if we’re lucky.

In the meantime it’s back to enjoying the basics: coffee, my fam, my cat, wonderful friends, colleagues, community, this beautiful Bay Area autumn weather, and healing slowly. Sitting in the sun. Reading good books. Naps. Letting the body heal itself. I must learn to be kind with my currently limited capacity, and rest when the body asks for it. I’m at about 35% of “normal” right now, and even getting clothes on requires a level of contortion and new sensations that cause pause.

white and gray cat paw
My right arm is a large, dangling comma. Sans fur. 

Sadness comes and goes. Yet another body part carved up, yet another loss. This is the truth of chronic illness – each shift and change is a new normal.  I try to remind myself that I can walk, talk, see, dance, eat, drink, laugh – most of all the things from before. But I also refuse to pressure myself, or anyone, with the tyranny of positive thinking, which often does not allow space for grief. Grief is as necessary as breathing, creates space for truth and healing, and must not be hurried.

I honor it, as much as I honor joy.

moon and stars

Magic Hour

We recently had a company called Magic Hour provide a free photo shoot for our family. They do this work pro bono for people with cancer, and we are so grateful. The photographer who worked with us, Melissa of Icarian Photography, was wonderful. She made us feel instantly at ease. I have been in the mind of legacy lately, and what could be left for my daughter and husband, and so it was such a relief and gift to have this offered.

Here are a few shots:

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I like to read. A lot. On days when fatigue wears me down, I rest here. Sometimes I close my eyes and the same soft breeze that brushes the Golden Gate wafts through those curtains. I remember the outside world, and I remember the long wide ocean that moves not far from me.

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Our messy garden. The cherry tomatoes have gone bonkers. The colors and bees and flowers cheer me up. Sometimes the best living is not organized. In disarray you might find your heart.

 

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And here, with my daughter, is mine.

Love out.

 

I Bunt, I Trip, I Get Back Up.

It’s been a rough patch.

This last chemotherapy treatment, the 6th out of 6 cycles of Taxotere/Xeloda, has caused fevers, flu-like bone aches, and general misery. I’ve been in and out of bed for days in a haze of napping and trancelike kitchen/bathroom visits. The pain in my bones and shoulder became so bad that the oncology nurse prescribed Norco, a known opioid. I plan to be judicious and careful about its use.

Today is the first day in over a week that I’ve been able to go outside and walk more than a mile anywhere, and just sitting in the sun gave such relief. Looking at the yard, at the tufts of clouds, at the sunlight and tomatoes and lobelia draping over the planter boxes, I couldn’t help but marvel at the gift of health. Of energy returning. Of life.

person standing on sunflower field
FYI: I am not this woman. This is not my yard. I don’t wear white cotton dusters and I currently have no hair. But I do love sunflowers. And living.

I’m very fortunate that I did not get HFS, or hand-foot syndrome, a potentially debilitating side-effect that causes deep peeling/cuts in hands and feet. I’m fortunate that neuropathy has never been more than a few short tingles in my toes. But this last treatment knocked me out, and the fevers  – which fluctuated between 99 and 101 for about two days – and deep bone pain, and dizziness, and fatigue, were hell. It was worse than the worst flu.

What makes these episodes so difficult is their unpredictability. My fever came on an hour after waking up. After a nap I felt slightly better, until nausea and severe nerve pain knocked me back down. This went on for a few days. But it is precisely this roller coaster of side effects and unknowns that has made it difficult for me to return to work, or to commit to activities, or coffee, or dinners,  for any consistent time period. And it’s frustrating, tiresome, and it takes a toll on our whole family.

So, I’m hoping the worst – the chemotherapy nadir – has passed, and that soon white and red and stem cells will begin reproducing quickly again. I’m hoping this treatment has sucker-punched the tumor into oblivion, or at least into operability, and that the word “cure” might be bandied about again. I’m hoping my health will begin its slow crawl back. The odds are smaller this time, but I take my cue from the Yankee Clipper.

Play ball.

two female in baseball gears in stadium ready to catch and swing baseball

 

 

Taxotere and Xeloda

I am recovering from my fourth cycle of Xeloda and Taxotere, and I’d like to talk about how things are going. This treatment plan is for a recurrence, a 5 cm tumor that showed up during my annual MRI in March of this year. The goal is to shrink this tumor in order to make it operable, and therefore remove it.

I receive Taxotere every three weeks, and, on the same day as the infusion, begin a two-week cycle of 4000 mg of Xeloda. Four pills in the morning, four at night.

As of today my eyes water constantly. My nose is an incessantly dripping faucet, causing me to wipe, drip, wipe, drip, and because of this I’ve become wary of cooking and paperwork. Restless legs make it difficult to fall asleep, leading to a cycle of fatigue and sleeping until 9 or 10 AM that has thrown my summer for a loop.

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This is not my bed. Artfully decaying foliage plays no role in my sense of decor.

So far, I feel fortunate that I haven’t experienced Hand/Foot Syndrome, a common and difficult side effect that causes peeling, itching, and can cause the permanent removal of fingerprints. And so far, I have no neuropathy. Knock wood.

But the fatigue. I’m writing this to share with others in treatment, other survivors – you will know what I mean when I talk about the crash, the far, low tide that comes with waking and feeling as if some deep core of bones and blood has been removed, and all that remains is an easily-toppled monument of skin. You become a heap of unmoving muscle, resolved only to rest. Rest and sleep are what the body orders. Mail opening or reading an email becomes an orbit of language that revolves but does not land – I can’t wrap my head around any cognitively demanding tasks after infusions. Give me TV, give me easy magazines. Youtube cat videos and naps.

close up portrait of cat yawning
The National Enquirer!

I find myself cueing up bingeworthy shows: old episodes of The Office, Handmaid’s Tale, Sherlock Holmes, and soon the latest Orange is the New Black. Some of these I watch at night when my husband and daughter sleep. Others I fall asleep to. Dr. Phil is another favorite. After all my losses, I can at least assure myself that I am not duped by internet Don Juans, or that no one in my family has been kidnapped by a cult.

The fatigue, it comes and goes. It is unpredictable and when it comes it must be honored. This is one of the many lessons of cancer: Listen to your body. It is its own untameable animal that requires tending, and if you listen it will lead you well.

How do you deal with fatigue? What are some ways you pass the time when your body says Stay?