Is having to meet your body as a stranger every single day.

How are we feeling today?

Will it be constant pain?

Overwhelming fatigue?

Will I be able to taste food today? Or even have an appetite?

Will I have motor skills? Or be clumsy and trip over my feet.

Will my brain be one I recognize today?

Or will I struggle to find words, remain focused or carry a conversation?

Nothing feels normal anymore, and the truth is, it might not ever again.

Of course I miss the me I was before cancer.

But sometimes I also miss the me I was yesterday, or last week.

Everyday I meet my body again, like it’s my very first time living in it.

Not know if it will be a good day, a strong day, or if it’s about to be a very very hard one.

Good morning body, it’s nice to meet you.

I don’t know if you will be good to me today.

But I promise to be good to you.

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The post When You Have Cancer, Your Body Becomes A Stranger appeared first on Cancer Is a Joke.

It’s not just how to squeeze chemotherapy and 100 oncology appointments between shuttling kids to school, loads of laundry, oh and working 35 hours a week.

That’s actually the relatively easy part to figure out.

It’s making the official “plan of care” and making sure I’ve heard every option that pulls in the strategy.

If you have early stage cancer, this probably isn’t the same. Stages one and two (and maybe even three?), there’s typically a protocol.

As in: If you do this specific treatment then chances are, you’ll be clear after a specific amount of time.

For stage four… not so much.

First, we do first line treatment. Which, apparently, step one is seeing “does first line treatment even work when the cancer is this advanced”.

If it does, great.

If it works particularly well, like it did in my case. Then it really becomes anything goes.

Cancer research is severely underfunded, and the majority of research dollars seem to be put towards prevention, and the earlier stages.

I understand, you can have a big impact if people don’t ever even get the cancer.

It’s much easier to cure something when the variables are fewer.

And, the trial timelines are often longer than stage 4 patients are given to live.

It’s a tricky situation.

But it also sucks having your doctor look you in the eye and say “we don’t know, there’s no data for this situation” because no one is studying what’s happening to you.

So then, it’s second opinions, and third opinions and second opinions on your second opinions.

It’s becoming an at-home researcher, looking up which hospitals offer which types of treatments and learning lots of medical terms that you never thought you’d need to know.

It’s reading active studies they’re doing on your cancer and other cancers to try and understand enough about the disease to make decisions that genuinely should require a PHD.

It’s your oncologists asking questions like “what do you think?” and “what ideas do you have” because plan of care has become a conversation, a strategic planning session where you are an active participant, and not just the one receiving the roadmap to success that’s been followed by thousands of patients before you.

All this is okay. I’m figuring it out. I have world class oncologists and surgeons weighing in on ideas and concepts that can continue to save my life.

I am so grateful for each one of them, who have taken the time to draw pictures and charts, to talk to me in ways that I can understand, about a disease they’ve spent decades studying, while I’m doing my best to get up to speed in a 30 minute appointment.

Stopping at just one doctor and one doctor’s opinion, isn’t enough when you’re stage 4. You have to get as many opinions as possible so you can weigh them against each other. There are treatments available at one hospital, that another hospital system isn’t doing, so they aren’t mentioning.

There are surgeons who can do complex surgeries that others can’t do, so the others don’t mention it as something that might work for you.

You read up on doctors, and study treatments and have conversations as if you’re an expert.

And you find the best plan of care for you.

It’s strategic, it’s difficult, and it’s all done while getting regular chemo, and having brain fog and your body and mind is not at all what it once was, but you have hope that it will be again.

Welcome to having stage 4 cancer.

Bring your A-Game.

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As soon as I heard my doctor’s voice over the phone, I knew. He wouldn’t be personally calling to say “the biopsy was negative”. It was just a matter of waiting for him to (very kindly) break the news officially.

Our Initial Plan

My GI was concerned because the tumor in my large intestine was so large that he couldn’t actually finish the colonoscopy. The scope couldn’t get by the tumor. No wonder I was in so much pain.

If this turned into a full blockage, that could be deadly, and require emergency room surgery instead of a careful laproscopic approach from a GI surgeon.

He wanted me to get a CT scan and immediately get surgery. We were going to skip over oncology (that would come later) because the situation with the size of my tumor was so dire. I was told to take Miralax daily and given strict instructions that if I ever go 24 hours without a bowel movement to rush to the emergency room.

Scans and Surgeon Meeting

I had my CT scan the day after I got the “cancer” call, and met with my surgeon the following Monday. Just 1 week after having the colonoscopy/endoscopy procedure that I was sure would reveal a simple celiac diagnosis.

I hadn’t gotten the official report from the CT scan yet, but I had asked them for the disc and handed it over to my surgeon. Before I gave him the disc, we had cheerfully been discussing a quick and relatively simple laproscopic colon surgery with a 2-3 day stay in the hospital and no need for an ostomy bag.

He took the imaging disc to the other room to view it and when he came back in he was no longer jolly. Color had drained from his face as he somberly told me he could not operate on me.

“There are spots all over your liver, these cancer spots will blossom if I operate, you need to see oncology immediately.“

To this point, we hadn’t really realized how quickly everything was moving for the medical system, but looking back, it’s really impressive how fast they pushed me through. As we were checking out at the surgeon’s office, he was on his personal cell phone in the hallway and mouthed to us “I am talking to oncology right now!”.

It felt like ages, but I met my oncologist 4 days later. She confirmed this was stage 4 colon cancer, and that we would need to start treatment ASAP. This meant a port being surgically placed in my chest, because the Folfirnox+Bev chemotherapy she was prescribing is too intense for arm veins.

I asked, how long it would be until my daily pain would go away. And what we were hoping for at the next scan. I was told we were hoping for “significant improvement” and, that it could be weeks or months until my pain was gone. “It takes chemo a long time to work” they said. I found out later, that no one knew at that time if the chemotherapy would have an affect at all.

Treatment Begins

Ten days after I met my oncologist for the first time, I had outpatient surgery (first surgery of my life!) to place the chest port.

The day after port surgery, I started chemotherapy.

I later learned that folfirinox+bev is one of the top two most intense chemo regiments. It consists of 3 separate chemotherapies and an immunotherapy.

I spent 9 hours in the infusion chair the first day, and then came home connected to a chemo pump that continued to administer chemotherapy into me at home for the next 50 hours.

My daughter had her very first cross country meet that afternoon, and I went straight from the infusion center to the meet. I could barely stand or walk, but I was there.

Five days after that first infusion, my daily, debilitating stomach and back pain was almost entirely gone.

Ongoing Treatment

Our initial plan was to get Folfirinox+Bev every other week for 4 rounds and then scan again.

This happened in October and it showed a significant response. I didn’t realize how significant at the time, but every doctor who has looked at it has gasped in shock and confirmed 2-3 times with me that this scan was after just 4 rounds of chemo.

We went from a 3 centimeter tumor in my colon to 2 centimeters, had substantial shrinkage of all the liver mets and affected lymph nodes as well.

8 More Rounds

At this point, my oncologist shared that the typical first line treatment is 12 rounds of the regiment I was on, and then we see where we are. We couldn’t have made this official plan any sooner, because she didn’t know if the chemo would work on me or not.

I started to lose my hair after 3 rounds and after looking like gollum for a few weeks, shaved it in November. I’ve wanted to buzz my hair since I was a kid, andI finally have a reason to do it!

In December, my oncologist gave me a week break for the holidays, I asked her if this would be a problem and she casually said “now that you’re stable, it’s okay”.

I hadn’t known that my position was unstable to start with, but it’s good to be stable, I guess.

In February, after 11 rounds of 50+ hour chemo every other week, I had another scan.

Complete Metabolic Response

This scan showed what is called a “complete metabolic response”.

This means the scans show ZERO active cancer in my body.

A response so rare, there’s not even data on how frequently it is achieved for stage 4 colon cancer patients.

Even more rare for those who haven’t had any surgery to remove cancer from the body.

We cried. We laughed. We stared at the results in shock.

We had known since December that there was no longer circulating tumor DNA in my blood, but that just means the tumors aren’t actively shedding, it doesn’t mean they’re gone/dormant. This was (and is) amazing news.

More Chemo… forever?

After getting that news, I called my best friend, got some ice cream and then, three days later, I went right back on chemotherapy.

This time, not folfirinox+bev, but a maintenance regiment of 5-fu (The 50 hour pump) and Bev (immunotherapy).

These two medications don’t kill active cancer cells like the other two chemos I was on. They actively prevent new cancer cells from forming and re-teach my body to attack cancer cells if they come up.

When I said it was rare for people in my position to have a complete response, it’s even more rare for that response to stick.

Most people who somehow get a Complete Metabolic Response have a recurrence of cancer in their body within a month.

I did not.

I’ve stayed on this 50-hour bi-weekly treatment plan for six months now.

And remain metabolically cancer-free.

What Next

Up next is more chemo. Indefinitely.

There is no way to know if chemo cured me (extremely rare) without going off of chemo and seeing if cancer comes back (HIGHLY discouraged, extremely dangerous).

Or cutting out the affected organs and going “ah, yes, the cancer was gone”.

Also… not great.

So for now, chemo. And more chemo.

As one of my oncologists puts it “we have no data on patients like you, because there are no patients like you”. Which is very kind, and encouraging, but can also be overwhelming at times.

I am extremely involved in making my plan of care, and I have an incredible medical team across three different hospital systems weighing in about every decision.

For now, we all agree, staying on chemo is the right choice.

So my focus is there, and building my body and strength back after the hell it went through for the past year. I may have to fight cancer again, and I want to be the strongest possible if that happens.

When I stopped folfirinox, I could barely walk (hobble) 2 miles, on my strongest day.

I could not stand up from a chair without using my arms to balance and brace and give me extra strength.

I couldn’t balance on one foot for more than 2 seconds and would regularly almost fall over, just trying to get dressed in the morning.

I’ve never been so physically weak and worn out in my life.

So I started working out and running again.

It was brutal.

My Sister in Law is a professional trainer and has been training me for the last five months.

This “building back” my health while actively getting 50 hours of chemo every other week has been one of the hardest things I’ve ever experienced. There’s nothing like re-learning to walk normally and balance on one foot, and stop running into walls due to a lack of balance and spatial awareness.

I’ve worked hard, even when I didn’t want to.

Now I run a 5k in the morning before chemo every other week.

I work do weights, mobility and running workouts starting the day after my chemo pump comes off, and going up until 2 hours before my next treatment.

I never go a day without walking a mile (even with the chemo pump) and most days I get at least 7,000 steps in.

There’s more complicated information about next steps, second (and third!) opinions. And what I plan to do next.

But that’s the SHORT version of the last 12 months of my life.

A medical anomaly.

Thanking God for every new day of life I’m given.

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