Sunday, November 24, 2013

The best is yet to come

Or otherwise known as, "Is that the best you've got?!"

Today was a hard day. I was going to write about eating yesterday and my struggles to get enough low-volume, high-calorie/protein food in me to have enough strength for treatments. But I ran out of time and energy.  Guess I'd better get used to that eh?  I had two great days on Friday and Saturday (aside from the itching...) and it feels like everything has been erased today. 

My nutritionist wants me to have 2700 - 3000 cal a day with 100 grams of protein. This is an impossible feat. So impossible that I've altered the numbers myself down to a modest 1700 - 2000 cal a day with as much protein as I can get.  But even with those numbers I feel like Sisyphus, starting each day with a task in which I'm doomed to fail. The more I eat the more I hurt. That's the distilled and simple truth. I've managed to get 1200 - 1300 cal a day in max, with 75 - 96 grams of protein, but it comes at a price.  My midsection is so constricted with this diet, that it makes it hard to breathe. I constantly feel short of breath and there is literally no way to fix it other than wait. And not eat. But I'm supposed to be eating.  I can't eat more than 200 - 300 calories at a time and I have to wait much longer than the prescribed 2 hours to eat again without pain. 

On the plus side, I've figured out how to make some seriously calorie dense smoothies. They taste pretty good too!  One of the suggestions that I've found to be the most helpful is adding a serving of powdered milk to my smoothies (which already have a cup of milk in them), that way you double the calories and protein in your drink while adding a negligible amount of volume.  Genius.  The other thing I need to try is adding an avocado. 

I also found out that I can't have anything with Stevia in it. I had a wonderful smoothie on Friday morning packed with a brand new protein powder. I spent the next two days with an unbearable itch and rash at various points on my body. Unnecessary stress at this point. 

I started feeling slight pains on the 24th of Oct. Since then I've lost 20 pounds. About half being a result of the cancer and half from not being able to eat right. I start chemo on Wed and it couldn't come sooner. I don't like taking pain meds, but I'm forced to at this point just to lay down at night. (Lay down...lie down?  Ah grammar is the least of my concerns right now.)

I'm rambling now...let's see if I can focus this a bit. 

I got scared today. Not the existential scared of the unknown future that I've already experienced and reconciled. The right now kind of scared that you feel when you walk down a long dark hallway. The kind of scared where you don't know if you'll make it to your chemo treatment in a few days. What happens if my breathing gets bad enough while I'm sleeping that it turns into an emergency situation?  What happens if my port placement and liver biopsy take a turn for the worst?  These are all completely irrational questions driven by fear and uncertainty. But they have flashed through my consciousness today.  Easy to do when you're stuck on the couch and feel like you can't breathe. 

I don't want to leave in 2, 3 or 5 years.  But I've made peace with that reality if it comes to it.  I'm not ready to go yet though.  Not right now.  But what real say in the matter do we have?  I was reminded of this as I was reveling in the exploits of my friends who rode the Tour of Tucson on Saturday.  That evening, a man named John Henderson was hit by a car while riding his bike in the race, and passed away.  That is instant and final.  There is no saying goodbye, no spending purposeful and focused quality time with your loved ones because you know what is on the horizon.  No making up for lost time.  My prayers go out to his partner and family.  

So...the best very definitely IS yet to come, if you take it.  We spend our lives missing opportunities and we shouldn't.  I certainly don't intend to anymore.  Yesterday was a good day and I spent a lot of time with Myah.  We built a Lego airplane and Myah asked where is was going to land.  So we built a landing strip too.  We've spent the past 24 hours with her being the plane (fast mover 425) and me being the tower, clearing her to land and takeoff (on runway 227 south of course).  It really has been wonderful and something that I may not have spent as much time on in the past. 

Go spend some time not missing opportunities. 



  1. A moment of love can last a lifetime.

    Hugs to you and Tami and Myah

  2. Jake,

    Thanks for sharing your story with us all. Many thoughts and prayers coming your way now and continually until you beat this thing. I haven't looked at any statistics and I don't know what kind of numbers they gave you, but I do know that it's not a zero % chance of beating this. With even 1% and your positive attitude, it is possible. Through God all things are possible. Like you said about the poor guy hit by a car (what a horrible story.....thoughts and prayers to his family too!), he doesn't get today. My brother passed away on August 15th at the age of 44 of a massive heart attack. None of us expected it in the least. He was an avid rock climber, very outdoorsy guy (he worked at REI for about 15 years and it would have been much longer, if that gives you any idea). He was thin (maybe if he was really overweight we would be less surprised?). If any of us had been told he was going to die at a young age, we would have expected it to be a motorcycle accident, a climbing accident or something of that nature. I got a call from my mom that night saying that they were headed over to my brother's house because there was a message on their answering machine saying he never showed up to work that day and never called (something he has never done in his many years of working there). He wasn't answering his phone. My mom and I knew instantly that something was horribly wrong. I started calling hospitals while they were driving to his house. I will never forget my mom sobbing and saying she didn't want to go into his house because she didn't want to find him. But she had to. And she did. She found him on the floor of his bathroom.....laying almost in an identical way as her father was when he died of a heart attack in the bathroom. I still don't know why my poor mother would have to go through finding her father and son in the same way. Anyway, sorry to go on and on, but I guess my point is, you aren't dead yet. You have the gift of today.....and tomorrow. I love, love, love your positive attitude. Of course you will have your down days. How could you not?? However, your positive spirit always comes right back. It sounds like you have an amazing family and support system. You are young. You can do this. And I have no doubt that you will cherish every moment and not take things for granted. My brother didn't have the "gift" of knowing his time was almost up. I'm sure there are a lot of things he would have wrapped up and possibly done differently. I know he would have maybe put my parents names on things so they wouldn't be in the situation they are now having to continue to pay his bills without getting any money or being able to stop the bills until they get the final death certificate (which they still haven't gotten over 3 months later). He never would have wanted them to go through the stress of that. Hang in there and keep up the positive thoughts. You are already an inspiration to so many by how you are handling your situation. You can do this. You have a ton of people cheering for you and sending prayers and positive thoughts. Thanks again for sharing with us all and being an inspiration for all of us and a reminder to never take one second of the day for granted.

  3. I found this website for soothies (you probably already found it) :-) High calories and high protein - -- one is 840 cals and 40 g Protein. My prayers are with you!! Many HUGS coming your way!!