TL;DR

• My rectal cancer symptoms increased significantly and are the worst they’ve ever been.
  
• I was able to get in to see my colorectal oncologist (Dr. C) this week for an assessment.
  
• I am mildly anemic due to increased blood loss.
• My entire abdominal area is bloated (and I can’t feel it because apparently this has been my “normal” for a long time. (It is not normal)
  
• Dr. C said the rest of the symptoms are common for a progressing locally advanced tumor.
  
• I was put on a low-residue diet. I am complying and I hate everything about it.
  
• I got my port placed for chemo.
  
• I had my second expander fill, which was larger than the first so my plastic surgeon can cut down the number of visits during chemo.

Read on for details—and for some notes about how the two cancers are butting up against each other in my daily life.

A Couple Setbacks This Week

Sidebar: I’m not sure if setbacks is the language I want to use because:

• It implies that healing is linear (it is not)
• It lacks self-compassion (it’s okay for things to suck)
• It has a bit of judgment around what’s happening rather than simply: this is what’s happening

So there’s that.

And also… I feel like I’ve been set back and I hate that. 

And the solutions for mitigating the symptoms of each cancer are, yet again, at odds with each other.

Rectal Cancer Symptoms

First: my rectal cancer symptoms got bad at the beginning of the week. The worst they’ve ever been.

I want this blog to be candid and open, but I don’t feel like getting into every detail, so I’ll share just two things:

• I’ve experienced a significant increase in blood loss.
• I’m experiencing constant pressure and discomfort throughout my entire pelvic region.

This second symptom has only happened once before.

Which is interesting, because prior to this week there was only one time I ever physically felt my cancer.

How this is showing up day-to-day—aside from being fucking scary:

• sudden fatigue
• weakness and shakiness
• lightheadedness
• increased resting heart rate
• pale skin
• needing to move slowly when going from lying down → sitting → standing

I also can’t sit or lie down for long periods because of the pressure—including when I’m trying to sleep, which leads to the question:

Why the hell am I sleeping on my back?

I’m a lifelong side-sleeper, but…

The Port

Second setback: I had my chemo port placed on Thursday.

So I’m back to sleeping on my back, elevated at about a 30–45° angle.

This is something I had to do for the first three weeks after breast surgery until I absolutely couldn’t take it anymore.

Then the pelvic pain started.

So I switched to sleeping on my right side (the mastopexy side, not the mastectomy side), even though I’m not really supposed to sleep on my side because of the breast surgery incisions.

But at some point a girl has to fucking sleep.

Sleep is literally the foundation of health.

So I started sleeping on my right side hoping it wouldn’t aggravate the surgical site.

Which is yet another example of how these two cancers interfere with each other:

• I can’t sleep on my back because of pelvic pressure.
• I can’t sleep on my side because of breast surgery—and now the port.

So sleep is back to being pretty fucked.

Which basically ruins everything.

Also my whole body is hurting again because…

I grossly underestimated how painful this port would be.

Wtf???

My body is back to guarding. I’m taking a lot of Tylenol again. And I cry when I make certain movements—like opening my mouth wide, moving my arm, or sitting up from a reclined position.

It’s on my right side (it was too risky to put it on my left, the side of the mastectomy and tissue expander). My right side is my good arm, the one helping compensate for my left arm which still has limited range of motion.

For a few days:

• No dog walking.
• No reaching.
• No driving.

Again.

Good times.

The Expander Fill

Also… I got my second expander fill on the same day as the port placement.

My plastic surgeon (Dr. H) asked if I tolerated the first fill well. Expander fills can make people pretty sore for a couple days.

I told her I basically felt nothing after the first one. 

So she filled me more than usual this week so we can cut down the number of visits I have to make during chemo.

I love this plan. I’m a big fan of risk reduction and minimizing exposure.

What I did not think about was how the soreness from the expander fill might interact with the pain from the port placement.

Turns out: they interact.

Note to self: do less.

Two Truths

This has been a week where I’ve really had to lean on the mantra:

This is temporary.
This is temporary.
This is temporary.

But also:

This fucking sucks.

Both things are true.

And “temporary,” in this case, is also a long time.

And it sucks.

Here we are holding two truths at once.

When Health Gets in the Way of Health

Another example of what I now repeatedly call:

“Ways in which my health is getting in the way of health.”

I was able to see my rectal oncologist (Dr. C) this week and get a full blood panel–the only time in my life I’ve ever looked forward to getting a needle stuck in my arm.

I knew something was wrong.

I needed these symptoms documented. I needed help. And I needed him to decide whether I’m strong enough to start chemo next week as planned.

This was the first time in my entire life that more than one blood marker was anything other than green.

I had about half a dozen markers come back yellow.

All pointing to anemia.

Easy fix, right?

Except.

I can’t take iron supplements because they cause constipation.

I can’t have constipation because I have a rectal tumor.

If anything presses against it, I feel pressure and pain.

Passing anything—even remotely normal sized—aggravates the tumor, which causes bleeding.

Which makes me more anemic.

Good times.

So instead I’ll be getting iron infusions once a week for three weeks, starting next week when chemo begins.

Less chance of constipation.

And holy hell please give me some energy back.

Because when I have no energy:

• I don’t move my body
• My mental health tanks

And I need the iron because anemia means no chemo.

And no chemo means…

well.

I die?

So we do what it takes.

Another example of health getting in the way of health.

The Low-Residue Diet

Dr. C also told me to go on a low-residue diet for a couple weeks.

I was fucking pissed and he saw it in my eyes immediately.

My team knows me pretty well already.

He knows I care deeply about nutrition and health.
He knows low-residue diets are not what anyone would call healthy long-term.
He knows it’s basically the opposite of the high-fiber diet recommended for breast cancer risk reduction.

And I have (had?) breast cancer.

So…

Also, it’s not exactly the diet you want to be eating three weeks after major surgery as there is, like, hardly any nutrition in it.

After I groaned and rolled my eyes and slumped in my chair he said:

“You have the rest of your life to eat fiber.”

I appreciate his attitude. Sure.

Also he’s kind of a genius at the top of his field.

So I’ll listen.

The Surgical Puzzle

He also suggested I push my plastic surgeon to do the expander-to-implant swap earlier than originally planned.

Because here’s another logistical puzzle:

• The expander contains metal, which means no MRIs.
• We need MRIs to assess tumor shrinkage before rectal surgery.
• So the expander has to come out before they can assess if chemo has reduced my rectal tumor to a size on which they can operate

Which raises the timing questions:

How quickly can you recover from chemo before another surgery?

How long after the expander swap can you safely do another surgery?

My poor body.

My poor body and her white-bread diet.

A Brief Appearance by “Typical Alli” 

It’s also interesting to note that when I arrived for the oncology appointment I could barely sit upright or keep my eyes open.

After our chat Dr. C examined my abdominal area and we were talking about March being colorectal awareness month and the events he had already participated in to help raise awareness and advocate for more funding.

By the time I left I was telling him:

I’m a strong public speaker. I worked in marketing. I’m a storyteller. If the team ever needs someone to speak on panels about dual primary cancers, I’d be happy to do it. How do we make colorectal cancer more sexy so it can get more funding because it’s killing all these people?

He said I should consider becoming a research advocate.

I don’t entirely know what that means.

But honestly?

Fuck all of this.

If fewer—or ideally no—people have to go through this someday, that would be pretty great.

Then I left the building and thought:

Alli.

Take a breath.

Rest.

Be the patient.

Be patient.

Get through this first.

Then you can go back to thinking about saving the world.

But I was happy to see Typical Alli show up for a minute that day. 

She’s pretty great. I miss her.

Where the Dual-Cancer Conflict Stands

Here’s the current reality:

• Eating high-fiber foods aggravates my rectal tumor → bleeding → anemia.
• Treating anemia requires iron → constipation → tumor irritation → bleeding → anemia.
• Port placement requires back-sleeping → pelvic pressure → pain → poor sleep.
• Poor sleep → pain → worse mental health → worse everything.

And I’m acutely aware that things will likely get worse before they get better.

So this is the reality we’re holding:

1. This will get worse before it gets better.
2. This is a marathon—an ultra-marathon—not a sprint.
3. We do the best we can.

And we repeat:

This is temporary.
This is temporary.
This is temporary.

In the Meantime

In the meantime I’ll eat fucking white bread and white pasta with butter or oil and not red sauce.

I’ll eat meats and white potatoes and canned peaches and, like, two vegetables that have to be cooked to death.

My blood sugar will spike and crash all day.

I’ll go into chemo less nourished than I want.

And when this is all over?

I’m eating whole grains and kale and fruit skins for the rest of my life.

And I’m sending Dr. C pictures of my beautiful, colorful, balanced plate.

Because he saved my life.

So we do what it takes.