Who Suffers the Most?

I have been thinking much on the subject of loss, in regards to brain cancer patients and their primary caregivers. The question came up in a recent support group conversation about whether it is the patient, or their closest (primary) caregiver who suffers the most. Due to both the cognitive and physical impact of brain cancer, patients often have to give up favorite activities or subject matter expertise for which they were known professionally. Think of the accountant who can no longer manage their finances, or the ski instructor who can no longer ski, let alone instruct. Brian had to sell his motorcycle and no longer sails.

I chatted with Brian on the matter, and we each have our own takes, but the general consensus was “it depends.” For Brian, he found the best path to happiness (for him anyway) was to embrace his current situation and look back on his former life with fondness versus regret. He has many happy memories of riding his motorcycle and no regrets for selling it when he could no longer ride safely.  He has kind of a unique take on life, but he does not think of having to set aside various activities in a negative light. He prefers to appreciate the goodness that he has now. With that in mind, he commented that he thinks I am often more hung up on his losses than him. It is true that I am not nearly as Zen about this all as he appears to be. He could also be riding the wave of denial, but it seems to be serving him at the moment, so who am I to challenge it. 

Initially, I was fired up to expound that caregivers can experience even more loss than their patient, and I was ready to rattle off various scenarios in which I suffered more. (How noble of me, lol.) But the more I (over)thought about it, the more I feel like this horrible journey is not a suffering contest. There is no prize for the one who suffers the most. You can always find others who suffer more than you, but that does not diminish your own pain. Think about the famous person who seemingly has everything and then ultimately takes their own life (Kate Spade and Anthony Bourdain come to mind as examples). I have lost much in this journey of care-giving for a spouse with Glioblastoma, including leaving my career, but I feel extremely lucky that Brian has been stable as long as he has. At the same time, the specter of recurrence hovers ever in the background. I try to honor the positives and acknowledge the negatives and live somewhere between the two ends of the suffering/celebrating spectrum. Some days I am better at it than others.

It also feels disingenuous to even suggest anyone other than the brain cancer patient would suffer any more than the patient would. They are literally losing part of their mind – the thing that makes them them, and ultimately lose often their very life to this diagnosis. Is it even possible to suffer ‘more’ because you bear witness to their loss as well as experience your own? But yet I have to ask, why do we proclaim that the patient suffers more, or even try to compare suffering between patient and caregiver?  It seems to me that we all suffer in one form or another and there is not a need to designate the patient as the ultimate sufferer. 

But perhaps I am missing the point. I certainly believe that honoring the self-hood of the patient is paramount. As the primary caregiver, I cannot count the times I have had to protect my patient from well-meaning others, outside the inner circle, who either vastly under (or over) estimate their capabilities And the idea of losing one’s personhood is truly gut wrenching. To imagine it happening to ourselves is almost unfathomable and then to watch it happen to our loved one defies understanding. That said, do we truly ever know the suffering of another person and who are we to say our own suffering is ‘less than?’ 

Supposedly, Viktor Frankl said, “Never compare suffering. Everyone has their own Auschwitz.” 

Brené Brown said, “Empathy is not finite, and compassion is not a pizza with eight slices.”

Maybe the greater question in all this is why is self-compassion so hard? Why do we look for ways to extend it to others and believe there will be none left for ourselves? 


To Do List

Here are a few short steps to have a happy/healthy/successful/long/fulfilling life:

  1. sheikh-tuhin-To-Do-List-2400pxSleep 7-8 hours a night
  2. Take Naps – *NEVER GOING TO HAPPEN PEOPLE*
  3. Eat your vegetables
  4. Cut out sugar and alcohol, and saturated fat, oh and carbs. Pretty much don’t eat anything that tastes good.
  5. Eat real butter instead of margarine (now we’re talking!)
  6. Don’t drink cow’s milk, but also don’t drink soy milk if you are a woman
  7. Get plenty of vitamin D, but I guess not from milk. Get it from sunshine, yay, unless you live in the Pacific Northwest, in which case get used to having crappy vitamin D levels.
  8. On the 5 minutes the sun comes out, wear plenty of sunscreen so none of the vitamin D gets in. Also because skin cancer = sucks
  9. Ladies take your calcium with vitamin D, but calcium citrate – not calcium carbonate if you are prone to kidney stones otherwise you will end up in the ER with, well, kidney stones. Note: 99% of all calcium supplements will be calcium carbonate, except expensive name brand ones.
  10. Don’t go to urgent care or you might get misdiagnosed with diverticulitis and end up in the ER with kidney stones even though you told the urgent care doctor that this feels just like when you had a kidney infection in college. Also get a C. Diff infection from antibiotics prescribed for misdiagnosis. Learn the hard way about the importance of probiotics and a good primary care provider.
  11. Eat yogurt, because probiotics *ALSO NOT HAPPENING*
  12. Keep a food journal
  13. Keep a journal-journal (can I write about how much I hate keeping a food journal?)
  14. Socialize with friends (without sugar or alcohol..??)
  15. Spend time with family, but in real life not on social media, which is fun when they live all over the entire country and airfare to go visit your parents is more than airfare to go to Hawaii. Of course, fish and relatives get old in 3 days, so don’t stay in that place you just spent more money than Hawaii to go to for too long.
  16. Exercise regularly. And exercise includes the following:
    1. Aerobic activity
    2. Strength training
    3. Core fitness
    4. Yoga
    5. Stretching
    6. Getting 10,000 steps a day, even though days you work out with your trainer and you can barely sit on the toilet the next day you are so sore don’t count because that kind of torture does not equal steps
  17. Do something creative like look at pinterest to see exactly how much of a loser you are because you can’t make handmade pasta in the shape of chinese lanterns
  18. Turn off the TV (Is a life without binge-watching Stranger Things on Netflix even worth living?)
  19. Drink red wine and eat dark chocolate (take that, #4! And, uh, does white wine count if you don’t like red wine?)
  20. Follow your passion
  21. Eliminate debt (if only my passion for giving unsolicited advice paid better, or at all).
  22. Meditate. Sit in a quiet place and calm your mind. Being a FOMO media loving American makes this very easy.
  23. Get an annual physical, and your eyes checked, get an annual mammogram, go to your dentist twice a year, and visit your various specialists that you have accumulated since you turned 45. Make sure all the various medical professionals mention that losing weight will solve all your problems but then don’t give you any guidance on how to do that. Get a colonoscopy before you are 50. Tell your husband terrifying stories about how he will never be able to handle the prep for your own amusement.
  24. Lose weight by calculating a mystery point system, journaling what you eat, and going to regular meetings. You will lose weight if you do these things. You will not lose weight if you do none of these things and just keep paying for your membership.
  25. Go to bed at the same time as your spouse. Unless your spouse routinely goes to bed before 8pm, in which case sit in the other room with the TV on ruining your brain with blue light and mock him from the sofa for his sleep weakness. Definitely wake him back up when you go to bed and tell him you are doing it for your marriage because you read an article on the internet once that couples should go to bed at the same time.
  26. Get off social media. (Well, then how am I supposed to know which friend of mine has some vague problem they are willing to post about but not say what it is.)
  27. Don’t smoke. Done. Never started. Super glad. If you have friends who smoke don’t ask them all the time if they are going to quit or tell them all about lung cancer. They will band together and plot your murder in which case your non-smoking life will be much shorter than theirs.
  28. Be married. I don’t necessarily recommend it to someone training for a long distance triathlon unless you like hearing about swimming, running, biking, bike parts, bikes in magazine, lifting up a bike with one hand to prove that yes it really is super lightweight. The only defense is to do your own endurance event and then you both talk about your events non-stop and effectively ignore each other together.
  29. Have a pet, especially one that eats too fast and promptly barfs their dinner on the carpet and then is hungry again. They will especially like to do this the morning you are having company over that night and just finished vacuuming.
  30. I have heard having children both makes you immortal and want to run in front of traffic, but I haven’t done that one so I can’t really comment. I can have fun getting “that” look from people when you told them you chose not to have kids, like, on purpose. It seems to be a mixture of pity and longing.
  31. Stop reading and making lists. They definitely make you depressed and feel bad about yourself.  Hang out with your friends and family, drink a little wine, eat a little chocolate, run around the lake with your friend regularly enough to get some exercise and also not need to pay for actual therapy, and maybe eat some vegetables with those carbs. Hug your cat and your husband on a regular basis. Definitely watch Stranger Things on Netflix, but maybe not all at one time, just like 2-3 episodes a day.

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Tips for Getting a Colonoscopy

This is not a very sexy post, but neither is getting colon cancer, so let’s just leave it at that. If you want something more entertaining in the colonoscopy-lit genre, may I suggest Dave Barry: A journey into my colon — and yours. As Dave and anyone else who has ever had a colonoscopy can tell you, the procedure is no big deal. If you need one, go get one. On the scale of awkward and painful, I’d take a colonoscopy over a root canal any day.

What follows are a few tidbits that made my own experience a few months back easier and/or I wish I had known beforehand.

Planning

  • Pick a Friend – they will tell you this when you call to schedule, so it may go without saying, but you will be sedated during the procedure and will need someone to take you there and take you home. No transportation buddy, no procedure.
  • Pick a Day – I suggest a Friday. You will feel right as rain after the procedure, but you will be tired from both the sedation and being up all night in the loo.
  • Pick a Time – this is the one I wish I had asked about more carefully. I am a morning person and figured early was better. However, I did not realize that my prep was a two-step process and selecting an 8am procedure meant I would have to get up at 4am to take a second dose of the prep. Ask the scheduler to help you factor the prep times into your selection of a procedure time. Note: you also don’t want to pick a time that is too late as your prep will then interfere with your ability to live a normal life greater than 2 feet from a bathroom.
  • Pick your Poison – turns out there is more than one way to clean out your colon. Some prep solutions are more or less awful than the next. Make no mistake, to date, there is no good tasting bowel prep, but ask about the prep they are selecting for you and what are the pros/cons and options. (I had Suprep, which tasted like a liquid salt lick, but the internet says is less awful than some of the other options.)

The Week Ahead

  • Go Vegetarian – or at least drop the red meat. The less you have in your colon, the less work the prep has to do. Save the surf-n-turf for a celebratory post-procedure meal and stick to lighter fare before-hand.

The Day Ahead

  • No Food for you – this will be part of your instructions, but you will be on an all clear liquids diet the day before the procedure. You can eat jello, but no red or purple jello. And believe me there is only so much green jello a person can eat. Chicken broth and Sprite were my faithful companions.

Prep-time

  • Chill it – mix up the prep ahead of time and put it in the fridge (unless your prep requires otherwise – see ‘pick your poison’ above). For whatever reason, chilled prep seems to go down better than room temperature prep.
  • Suck it – having a straw made the prep go down way easier and faster than trying to drink it out of the container.
  • Drink it – the prep is awful tasting and it is extremely tempting to bail out on finishing it all, but if you do not complete the prep and your colon is not clean enough, they will reschedule or repeat the procedure. What is worse than having to drink all that gross prep?  Having to drink it again less than 10 years later…

Go-time

  • Short Attention Span Theater – As far as what to do when you are traipsing back and forth from the bathroom, some folks suggest taking an iPad with you and just stay in there for the duration. I did not find that necessary or desirable. However, whatever you decide to do, it will be punctuated by frequent interruptions. I put on some of my old favorite movies that I had seen a million times and therefore could safely pop in and out of the plot without missing anything.
  • Baby your butt – one of the best bits of advice I got was to buy baby wipes. You will spend a lot of quality time on the throne during the prep and your bum gets a bit tender from all the wiping.

Procedure Day

  • Weigh-in – They will weigh you at the hospital when they take your vitals it will be the one day in your life you will be excited about getting on a scale.
  • Take a little nap – they will hook you up to an IV and give you a sedative and then you will wake up and it’s all over. There is no discomfort or after-effects as, get this, there are no nerve endings inside your colon.

That’s it. Go home and have steak and eggs for breakfast. Relax on the sofa and watch a movie all the way through. Pat yourself on the back for doing something that’s really not so difficult and may save your life. Encourage a friend to do the same.