7 Tips for Making Chemotherapy More Bearable – Living with Lymphoma Week 25

You – or someone you know – have gotten through the initial cancer diagnosis.  The “Oh, NO!” stage.  The fear, the denial, the anger – you dealt with it all.  Now has come the second kick in the teeth.

Your treatment is going to involve Chemotherapy.

If you’ve been following my Living With Lymphoma article series, you know that I’m right there with you.  I was diagnosed in April, 2014 with Stage IV Classical Hodgkin Lymphoma and scheduled for twelve chemotherapy treatments.

I’ve now been through ten of those twelve chemo treatments – and chemotherapy is some miserable stuff – but I have discovered a few things that can make those treatments more bearable.

Keep in Mind – Everyone’s experience is different.  What works for me?  Might not work the same for you – but however it works best for you is what’s most important!

Remember to focus on YOU!

Remember to focus on YOU!

1 – Focus.

You need to focus on YOU.  Your entire focus needs to be on surviving this cancer mess and getting better.  The only way that you are going to be able to do that is to concentrate on making sure that everything you do is based on what works for you.  Family, friends, co-workers, members of your faith community, complete strangers, your book group, even people posting articles online on the topic – all of those people are going to want to help.

You and your medical team will be working together to make sure you have a comprehensive plan that encompasses your well-being.  Stick to it.  Keep focused on it.

Remember that list of people who want to help?  Here’s where they come in.  There is going to be an overwhelming amount of concern and offers of “help”.  Everyone has your best interest at heart – but sometimes they don’t realize the stress you are under.  Don’t feel obligated just because these people have offered.  If the help they are offering doesn’t fit with your focus on you?  Just politely decline.  You are sick – it’s really up to you.

Selfish?  Of course.  You. Have. Cancer.  You need to focus 100% on getting healthy.  People will understand.

2 – Hydration.

Hydrate!  Hydrate!  Hydrate!  This is the most important tip that I can offer.  Hydration is a MUST while undergoing chemotherapy.  No matter what type of cancer you are being treated for, chemotherapy is basically poisoning you.  Its goal is to kill cells in your body.  Hydration is the best way to keep your body working the chemo drugs through your system.

Why do you need more?  You are going to find that the chemotherapy drugs are going to use a lot of the water in your body, so the normal amount of fluids you are used to consuming are not going to cut it.  How can you determine your basic hydration level?  Check your urine.  Not very much?  Dark yellow?  An odd smell?  You’re Dehydrated!  Ideally, you want a good amount of urine that has a barely noticeable yellow tint.

Don’t wait until you get dehydrated – stay ahead of it.  Work to be sure you are very well hydrated in the days leading up to your chemo appointments.  Then continue to drink and monitor your hydration during your recovery period.

What to drink?  There are all sorts of things suggested for keeping hydrated – Water, fruit juices, sports drinks, ginger ale, etc… Simple, right?  Not quite.  One of the things you are going to discover is that drinks full of sugar or acids are going to make you SICK.  Fruit juices, sports drinks, and soft drinks are all packed full of sugar.  When that sugar hits your stomach made very sensitive by the chemotherapy drugs?  Yuck.  You are going to be miserable.

Water, then, becomes the drink of choice.  Perfect, right?  Well… yes, but there are still a couple of issues.  Personally?  I struggle to drink that much plain water.  I’m one of those people who likes to have a little flavor in my drinks.  The other thing?  We need to make sure that we are getting the necessary salts and other electrolytes to be sure that the water you are ingesting is able to be used by your body.

My choice for my hydration needs.

My choice for my hydration needs.

To deal with those concerns over both taste and electrolyte balance without the sugar that will make me sick – I turned to my experience as a cyclist.  I love to ride my bicycle, where hydration is also very important.  While biking, I use NUUN, which is a self dissolving tablet added to my water that contains a light flavor, electrolytes to help my body absorb and utilize the water I’m ingesting, and no sugars to cause stomach discomfort.  It occurred to me that it would be a perfect way for me to keep hydrated during my chemotherapy!  It has worked wonders.  I stay hydrated and thus much more comfortable during my recovery periods.  Fewer headaches, less nausea, and a quicker path back to feeling more normal.  Obviously, you should check with your doctor before trying anything new or unusual – and you will want to sample a product like this before purchasing a large amount since the taste isn’t for everyone.

I have found that my hydration needs have increased between 50%-100%.  That’s right, I’m ingesting about twice what I normally need during my chemo weeks (and trying to keep better hydration levels the rest of the time as well).  I use NUUN to supplement my hydration to make sure my levels are up to where they need to be – obviously that’s a very personal thing and you’ll need to work out where your hydration levels will be most comfortable.

I contacted NUUN to see what they had to say about their product being used by cancer patients and got they were kind enough to send the following reply from their Education and Innovations Leader, Mr. V. Patel:

“Hydration is absolutely a key factor in cancer patients going through the day-to-day challenges associated with increase intake of medication and chemotherapy. Both of these instances can cause the body to quickly become dehydrated. Certain medications have been known to have adverse side effects that are associated with dehydration and excessive thirst. That where Nuun comes along. Nuun promotes hydration by providing a product that has a light-refreshing taste, electrolytes (to help retain water), and no added sugars. This allows the individual to hydrate based on their individual needs without having to worry about excess calorie consumption (like other sports drinks). Although water is the most convenient option for hydration, water alone won’t cut it. You need some sodium in the beverage to ensure that the water you are consuming is properly absorbed. The sodium helps pull water to cells, helping critical nutrients get distributed within the body efficiently.”

Now, going back to Tip #1 – you do what works for you.  But however you do it, make SURE you stay hydrated.

3 – Hygiene.

Staying healthy is another important factor during chemotherapy.  Chemo drugs are going to weaken your body.  Your immune system is going to weaken, your white blood cell counts are going to go down dramatically, and you are going to be fatigued and weaker than normal.  All of this added together is going to seriously affect your body’s ability to fight off simple infections – not to mention the more serious ones.

Your first line of defense?  Reduce your levels of contact with things that carry germs.  Don’t need to go out in public where you need to touch things?  Don’t!  Doors, grocery carts, electronic checkout pens, movie seats, museum displays, children, airports and airplanes – all of these things carry massive amounts of germs that your body no longer has the tools to deal with like it used to.  How to avoid a door, you ask?  Use the handicap button if it has one, ask someone else to open it for you, use your shoulder or your elbow to push, carry a handkerchief or paper towel to handle it – but DON’T TOUCH.  You aren’t going to be able to do that with everything, but avoid what you can.  Do the simple things, right?

Next?  Wash your hands.  Often.  Constantly.  Become Lady Macbeth.  And make sure everyone around you does, as well!

Use it - and ask the people around you to use it as well!

Use it – and ask the people around you to use it as well!

Can’t wash your hands?  Use hand sanitizer.  I know – everyone hates hand sanitizer.  It’s yucky.  It smells bad.  It dries out my hands.  And it might just keep you out of the hospital – use it!  I often will use hand sanitizer first so the alcohol kills what it can, then wash my hands immediately afterward.  They also make sanitizing wipes, travel sizes, etc… so that you can take it with you everywhere you go.

Top Restaurant Tip:  I refuse to live like a hermit during my chemo treatment (6 months of life-like that would drive me nuts), so we still go to restaurants occasionally.  Be sure you sanitize AFTER you are done handling the menu!  And if you are using a sanitizing wipe?  Use it to clean off your silverware as well as your hands.

Make sure anyone who is coming into contact with you is washing and sanitizing as well.  Visitors, neighbors, family – they all need to be vigilant with this stuff as well!  They will do it if you ask – just remind them that they are helping keep you safe.  If someone around you is sick – wear a mask.  Or ask them to wear one.  My wife has had to travel a few times for business while I’ve been going through chemo – she wears a mask at the airport and on the plane – and I love her for it!

Don’t Touch!  Let other people handle doors, shopping carts, elevator buttons, and anything else you might come into contact with that a lot of people are touching.  There’s nothing wrong with asking friends or companions to do these things for you!

Why is this so important?  I caught a little bit of a cold bug a few weeks ago.  It was something that my healthy “non-chemo” body probably wouldn’t have even noticed, or would have dealt with in a day or two.  I hadn’t managed to fight it off before I went in for chemo – and that was the most difficult chemo recovery I have had.  I was MISERABLE.

Don’t let it happen to you!

4 – Flexibility.

No, I’m not talking about deep knee bends here, I’m talking about the flexibility that you and others need to show while you’re sick.

You are going to need a caregiver – chemo isn’t something you can do alone.  That person is most likely going to be a spouse, family member, or significant other.  It is a tough job.  Dealing with you when you feel like crap after chemo is not going to be easy.  This is where the flexibility comes in on your side – try to be patient.  Apologize when you are mean or crabby, and explain that you aren’t feeling well.  Thank them profusely.

Your employer and your caregiver’s employer are also an important part of the flexibility discussion.  Can they help with scheduling, telework, substitutes, vacation time, sick days?  Anything to help give you time to recover from each treatment.  My wife’s employer has been amazing during my illness, allowing her to take every other Monday off for my chemo infusions, then work from home for the next two days to allow her to be available if I need care.  Unfortunately, not every employer or situation is going to be that flexible – but don’t hesitate to kindly ask what they might be able to do.  They might surprise you.

Note for Employers and Businesses: Be flexible.  Do it.  The dedication that you will receive from your employees will be well worth the small inconveniences.  Ask the entire workforce to come together to help – make being flexible a company project for the time your employees need.  I cannot even begin to express how grateful my wife and I are to her employer for their willingness to be flexible with our needs.

5 – Exercise.

Okay – now I am talking about deep knee bends.  It is important that you stay fit during your treatment!  My chemotherapy treatment encompasses 12 sessions over SIX MONTHS.  Imagine if I did nothing fitness related during those 6 months?  At the end of it I’d be as weak as a starving kitten (I know this because that’s exactly what happened after my recovery from brain surgery).

There will be a lot of days during your chemo treatment that you feel just fine.  Make sure you take advantage of those to get out and get some exercise.  Make sure you do not over exert yourself, though!  Your body is not the strong marathon runner you were before you started chemo!  Take it easy and work up to a comfortable level.

If you didn’t exercise regularly before you started chemo?  Talk to your doctors.  Let them help you find a comfortable pace to begin.

I ride my bicycle when I can – I’m only able to ride about 1/3 to 1/2 of my normal miles, but it still is helping keep me fit and strong.  On the days when I don’t feel up to riding, I don’t.

Which brings us to our next topic…

Sleep is often the best remedy...

Sleep is often the best remedy…

6 – Rest.

Rest?  You just told me to get out and exercise!  Now you’re telling me to rest?  Yep.  I sure am.

Make sure you are getting enough rest.  Naps.  Good sleep at night.  Quiet time.  And making sure you aren’t trying to do too much (don’t forget to ask for help from all those friends, family, church groups, book clubs, co-workers, etc…).

Keep your batteries charged.  Make sure you take care of yourself.  And let sleep cover up the nausea and icky feelings on your recovery days.

I’ve even taken to sleeping through my actual chemotherapy infusions – the nurse has to wake me up every time they change drugs to go through all the identification procedures – then I go straight back to sleep.

7 – Nutrition.

Balanced nutrition during chemo is both extremely important and very difficult.  It’s hard to eat healthy when you really don’t feel like eating at all.  And if you are the cook in the family?  It makes it even more difficult.

Realistically, the best course of action is to eat what is comfortable on the days after a chemo treatment that are the most difficult.  Eat smaller portions of whatever your stomach can handle.  Stay away from greasy, heavy, or anything with weird textures.  Simple soups are always a good choice – you can decide if you are up for crackers or not.  Small portions of rice, cooked vegetables, etc…

The situation in our household is a bit more complicated because I’m the cook.  My wife is just not terribly comfortable or confident in the kitchen.  Canned soup?  She can manage that, but that’s basically what she’s stuck with having for dinner as well.

How do you work around that?  Prepare meals ahead on the days you feel up to it and put them in the fridge or freezer.  Solicit all the people who, when you told them about your diagnosis, insisted that “If you need anything, don’t hesitate to call” for a simple casserole or something.  We had devolved down to the level of 10 Minute Skillet Meals.

We had looked into different prepared meal options that could be ordered locally or on the internet, and some thoughtful family members had sent some meals from MagicKitchen.com which were excellent.  We were amazed at the quality and taste of food you could get that were simple to prepare and absolutely delicious.  The Magic Kitchen meals, however, were designed around people who wanted really good food but didn’t have time to cook – they weren’t designed with chemotherapy patients in mind.  Sometimes they were just a little heavy when I wasn’t feeling well (which was difficult because they tasted so good!).

A meal service might be a great choice!

A meal service might be a great choice!

Then we received a wonderful gift from the greyhound rescue group that we have been volunteering with for many years.  They sent us a gift certificate for Meals to Heal (www.meals-to-heal.com), which is a meal service designed specifically around cancer patients.  I was a little hesitant – as I always am trying new things on a sensitive stomach – but I found the food to be exactly what they advertised: well portioned, high quality, convenient, and healthy.  They come in recyclable containers that heat up in the microwave quickly and easily (most of them are heat 45 seconds, stir, heat 45 seconds, eat).

The Meals to Heal meals are made to be  light meals that are easily digested on a touchy tummy, yet provide a huge (and I mean HUGE) variety in their menu – everything from eggs & pancakes for breakfast, to staples like meatloaf or tuna casserole, to variety like salmon with wild rice or pork lo-mein.  It’s enough to keep your taste buds interested and your stomach stable for the duration of your chemotherapy treatments.  In addition to offering meal plans for patients, the www.meals-to-heal.com website offers a WEALTH of resources and information on cancer, diet, caregiving – and they also offer 1-on-1 nutritional counseling.  Even if you are not interested in a meal plan, I’d suggest taking a look at their website just for the free information they have available – there is so much there to help.

Again, I was curious about what drives a company like Meals to Heal, so I contacted them as well.  I ended up having a very enlightening discussion with the Founder and CEO, Susan Bratton.  Ms. Bratton is much like many of us, in that cancer has had a huge effect on her life.  She lost a close friend to cancer and was dismayed by the difficulty that family members had in finding proper nutrition for her friend.  She was inspired to start Meals to Heal.  She subsequently quit her job and has not looked back.  I offer a big thanks to both my generous friends and to Ms. Bratton – my stomach is certainly grateful!

As I continue, to say: You do what works for YOU!  But give some thought to checking out a prepared meal service.  Both you and your caregivers might find that it is a huge stress reliever, and your stomach will thank you.

 

Did I forget anything?  Please feel free to post it in the comments!

And don’t forget to share…

 

 

2 Responses to 7 Tips for Making Chemotherapy More Bearable – Living with Lymphoma Week 25

  1. sandy naglowsky August 21, 2014 at 11:48 am #

    What a fantastic helpful article Chris. I am sure this is going to be very helpful to many people. I found it extremely interesting. Keep doing what you are doing,many blessings to you and your wife. Hope this will turn into another book to go with the one you wrote on your brain tumor. Think of all the people you have helped so far, and will help in the future. I am so proud of the man you are,and happy to know you as a friend. Keep up the good work.

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