OK, take this a section at a time.

There is a bunch of information here, you do not need to attempt to digest in all at once.

If having Chemo, there are common waypoints people experience –

• Being Unapologetically Immunocompromised

• For some, surgical placement of a port to infuse chemo

• The “informed consent” conversation.

• Your first infusion session.

• The chemo crash is a delayed reaction.

• Preparing for and managing side effects like nausea.

• Longer term side effects.

• Ringing the bell – graduating from chemo

Being Unapologetically Immunocompromised

The path that you are on has a variety of risks.

Going into this as healthy and strong as possible has benefits.  Keeping healthy throughout the process is a key to survival.

Managing your own health will be a substantial rollercoaster because chemo reduces your ability to fight infection. This health status is called being immunocompromised.

If a family member, service provider, or stranger is sick – whether a cold or COVID – your proximity to their illness could kill you.  

I remember having to raise my voice to a few family members who weren’t quite getting it (it’s only allergies, really).  We limited visitors from outside and had a direct conversation about health status before they cleared the door.  If you have a spouse, significant other, or guardian figure, ask them to be your growling bodyguard as to this topic.

You have permission to be uniquely selfish, do so.

So spread the word with family and friends, reduce your risk in public, and operate in a bubble of safety.

At ALDI (only early shopping hours), when they tried to give me the cart from the person in front of me at checkout, I stopped them, smiled and said, “I can’t use their cart, I’m immunocompromised.” No one ever argued the point.

After COVID, this is easier to understand.  Act like you are at the epicenter of a new COVID outbreak without a vaccine and protect yourself accordingly.

Do I mean masks in public places indoors? Yes.

Do I mean not going out to dinner or the grocery store? Probably, unless you can highly control your surroundings and those that sit around you.

Consider having someone do your shopping or going into crowded public places for you.

And your reward is that you get to survive this..

Port Placement and Care

Doing a port placement soon?

Outpatient surgical procedure – it usually heals well in a week to 10 days.

After you’re healed up – Skin care around your port for infusion dressings – Search Amazon for: “Smith & Nephew NO-STING SKIN-PREP Wipes, Protective Dressing Wipes, Alcohol-Free Skin Barrier Film” use this before multi-day dressings over your port

Informed Consent Conversation

Before infusion, most infusion centers sit you down and have a staff member go over some pre-game notices.  They may leave you with a package of papers to take home and read; these could scare the hell out of you.  This is the “informed consent” conversation. 

I left this conversation with my eyes glazed over wondering what just happened. Don’t freak out – it is just a required step. Basically, they are required to warn you about everything that could happen, not everything that will happen.  

After this conversation (or before, ideally), be prepared to ask your clinical team for nausea control meds in advance of your first infusion session.  You must understand their proposed anti-nausea protocol AND meds on the shelf waiting at home.  Our experience informs us to suggest YOU INSIST on multiple nausea meds that target different pathways. See Gary’s superb section on nausea control herein and my summary below. Remember – you need multiple classes of nausea control agents, not just one.  You will probably need them for many days.

Also – ask your caregivers to tell you the name of ALL of the drugs or chemo agents you will be receiving.  Have them spell out the names and write them down carefully.  Then Google known side effects later. 

Infusion

Infusion sessions generally last hours and many times experience delays.  A short infusion session is three hours, some will last over seven.

Bring something to read, music, movies, snacks, nap essentials, whatever works for you.

You will have a blood test of some sort before (hours or a day before) your chemo session.  The test results are a decision point on receiving an infusion on a given day.

Port flush, port game on infusion day – expect problems, everyone has them – this is unremarkable.  Clearing your port may delay your infusion session from minutes to a few hours, be patient.

So what does infusion feel like?  Does it hurt? I experienced pain only when they accessed the port…I did not feel pain otherwise during the infusion session.

Skin care around your port for infusion dressings – Search Amazon for: “Smith & Nephew NO-STING SKIN-PREP Wipes, Protective Dressing Wipes, Alcohol-Free Skin Barrier Film”

The Week of Chemo Treatments & The “Crash”

What Infusion week is like…there is a 3 to 5 day delay from infusion to crash. 

“Crash” does not mean hospitalized.  It feels more like the flu and wanting to sleep 22/24 hours.  That’s OK – the worst only lasts a day or two.

Get a calendar and schedule your crash days – plan nothing on those days.

BEWARE of balance issues – use a walker, cane, whatever you need during crash days.  Be especially careful of sit to stand or lay to stand transitions – hold on.  That said, you gotta keep moving – more to follow.

Platinum based chemo side effects are additive – I had 6 rounds – 4, 5, and 6 were a bitch – side effects more pronounced (balance, blood counts, peripheral neuropathy, etc.)

Chemo pump or infusion day only?

Chemo pump hints – discuss types of clothing, put a pillow over the pump when sleeping so it doesn’t disturb your sleep, don’t tug on the tube…

The infusion center is there for you and can keep you out of the ER – use it. Hydration

Try to stay out of the ER – because you are immunocompromised…

Nausea Control & Digestion 

Before your first infusion session, you must:

• Understand your clinical team’s proposed nausea protocol, and

• Ensure there are using meds from multiple classes/pathways, and

• Have a script(s) for, or already possess, plenty of meds in hand at home.

You must understand their proposed anti-nausea protocol AND meds on the shelf waiting at home.  Our experience informs us to suggest YOU INSIST on multiple nausea meds that target different pathways. See Gary’s superb section on nausea control herein and my summary below.

Nausea is a hole…don’t get into it.  Use everything to stay out of the hole. Here’s an example:

• Varuubi oral one hour before chemo infusion;
• Sustal injection in tummy before infusion (same class as Zofran, lasts multiple days);
• Zofran oral (4 & 8 mg) starting days after Sustal wanes;
• CBD/THC vape for break-through nausea (think fire extinguisher).

Another example:

• Emend oral three day pack started one hour before chemo infusion;
• Zofran IV during infusion;
• Zofran oral (4 & 8 mg) starting days after Sustal wanes;
• CBD/THC gummies (optional).

Different agents operate on different pathways – use them all. See Gary’s helpful nausea control chart identifying the different classes and drug names in this blog. 

CBD THC – superb agents and helpful for breakthrough – get your med MaryJ stuff going now. Gummies, and vape for when you can’t keep food/liquids down. In a job that requires drug testing (or, as of mid 2022, a Federally regulated job)? These agents are not for you.

Diet, digestion – chemo messes with your ability to digest food. Just be aware.

Too loose or bound up – this will likely be a roller coaster during chemo; this is to be expected.

Consider chopped foods or chopping your dinner before eating – smaller parts aid digestion. It works and is less annoying than counting to one hundred every time you chew a mouthful of food.

Chemo targets any rapidly dividing cells – your mucous membranes will get get trashed

Eat foods you love or if you can’t eat – make a shake containing 1/3s – fat, protein, carb — low waste foods.

If offered a dietician, say yes…

Keep in mind, the steroids used as part of your Chemo protocol may impact your sense of taste.  Food may taste different.  Hang in – this gets better, too.

Get low sugar now… yeast infections during chemo are common. Starve them by eliminating extra sugars and considering lower carb diet.

Longer Term Side Effects & Other topics

Your blood counts will get trashed – it’s OK, they usually recover

Careful to keep moving – avoid DVTs – platinum chemo will mess up your clotting factors

Peripheral neuropathy is the tingling or numbness or pain in hands and feet- immediately discuss/monitor with your Onc., may last a while, many times it gets better with time.

If T2 diabetic, discuss.  If close to being T2, the steroids (dexamethosone) might push you over…

Ringing The Bell – Graduation

In many infusion centers there is some brass or chrome, nautically themed bell mounted on the wall.  The notion is that patients ring the bell after their last chemo session to declare, “I’m done.”

I have mixed feelings about this.  

Personally, I don’t like the term “cancer-free” or saying I beat cancer.  

That feels arrogant to me. Maybe I don’t want to tempt fate.

I was told that the key to surviving this was to do the next right thing, then the next, and so on.

Instead, I prefer the notion of graduation.  

I got through this. I completed this. 

I’m going to get as strong and healthy as I can for what comes next.

I graduated six sessions of platinum-based chemo.

So, I rang the bell.

Your call.