The Hitherto Unmentionables

I've been told a lot lately how good Ryan looks, with the "for having cancer" being left unspoken and yet loudly heard. I am always eager to say that I totally agree, he looks awesome! He always has, in my (barely) un-biased opinion! And truthfully, unless you've known him and seen him on a regular basis, you wouldn't notice the bags under his eyes, or the paleness in his face. You wouldn't pick up on the slightly stooped posture he's developing, born of his frequent hunching over to hold his belly against the pain or in trying to quell the nausea. If you stopped by tomorrow and saw him out weeding the garden, his slow pace and careful movements wouldn't really stand out. From a distance, both in view and in relationship, he truly does look great! Especially when you consider the image of a frail bald soul that automatically pops into your mind when you hear the word "cancer".

He hasn't lost his hair, a fact that he is not-so-secretly so relieved about it's funny! He has a little bit of extra pep when fixing his hair now, you can just see him kind of patting/petting it in a little "phew!" kind of way. He has lost weight, but it's stopped dropping now, so there's no stark difference in that aspect anymore from one visit with him to the next. All in all, appearances show that he looks like any other normal healthy person, and he functions somewhat decently.We are so thankful for that, for all of the positives, and at his request that is mainly all I share, on here or in person. But there is more to living through this than that. There's the inside stuff, the day to day stuff that unless you've walked this path you can't imagine. So I've decided I have to share some of that, too. Because we are not the only one's who will ever go through this. And because the well-meaning comments build up in my head until I want to scream, frankly. I don't take them to heart, because I know most people just don't know what to say, or don't understand what cancer and treatment do to a body--to a spirit. But I want you to know, inasmuch as we know, so maybe you will remember when you see him and he looks good that he is still enduring something horrific every moment that he lives. That he will live every moment of the rest of his life this way. And the ups and the positives and the bright sides of it, he deserves those. Every. Single. One.

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The main complaints that never cease are the fatigue, nausea, and gastrointestinal issues, which in layman's terms is diarrhea and puking. All of these are caused by the Gleevec, and while they are not the worst it has to offer, they are now constant companions in Ryans day to day. He takes the chemo, the Gleevec, at night, with a small snack right at bedtime. He takes an 8hr anti-nausea pill and an anti-diarrhea pill at the same time, and is able to sleep about 6--6 1/2 hours straight through while those pills are in full effect.As they start to wear off, he wakes up feeling like he wants to puke his guts out. He takes a 4hr anti-nausea pill and another anti-diarrhea and then begins the morning routine of staying close to the bathroom. Every single morning there is approximately a 1--1 1/2 hour time frame in which he repeatedly has diarrhea. The puking is not a daily occurrence thankfully, but it is wicked brutal when it does overtake him. He can barely move for some time afterward. In lieu of the actual vomiting episodes, he has that feeling of being on the brink of it, of kind of wishing it would just happen so that the intense nausea would go away. The main point of my explaining this is in trying to help you to understand that yes, he still has hair...but he is tethered to a toilet and a trashcan with no control over his own body every single morning, for quite possibly the rest of his life.

When the meds take full effect again, and if it's been a puking day then when he's recovered enough from that to do so, he gets immediately up on his feet and heads out into the day. He does whatever needs doing until he can't stand up anymore. It's not labor intensive stuff, nothing like the things he used to be able to do, but his body is weaker than it used to be, so it takes the same toll on him. He sits and rests frequently, and after a few hours he drags himself inside and collapses into the recliner or onto the couch or into bed and is snoring in under 5 minutes. He is asleep for usually about 2 hours, sometimes up to 4--he is just that wiped out. All the time. When he wakes from resting he gets up and does whatever else he didn't get to in the morning, but you can see the struggle in it. You can see the slowness in his steps, the concentration on his face as he pushes himself through the very last bit of energy he has in him. When he sits down again for the night you couldn't miss the frustration in his face if you tried. A to-do list left mostly undone...half a day wasted asleep or in the bathroom...exhaustion like he's just done a tri-athalon but in his own mind he's done nothing but be "a lazy bum" all day.

Secondary complaints are the food, the pills, and the muscle cramps. There are countless reasons why Ryan's diet has to be changed--and not all of them are due to the chemo being ingested daily. But that adds a seriousness to implementing the changes quickly and fully. They include: No red meat, no refined or processed anything, no "white" stuff, as little sugar as possible, as much raw-plant-based foods as possible, whole grain everything, limited animal-based dairy in low/no fat only, no salt, and organic organic organic everywhere and every way we can implement it. Our "rule of thumb" is that everything he eats or drinks should have a maximum of 3 ingredients, and single-ingredient items are ideal. By that it means when he's eating a carrot, that's a single ingredient item-it's just a carrot. By comparison when he ate a bag of chocolate donuts while on the road a few months ago, there isn't enough room here to list all the ingredients in those.  And that was a regular sort of "snack" for him. He's always been a steak-and-potatoes kind of guy, with a beer, and liberal amounts of Little  Debbie-type snack cakes for snacks or desserts or whatever. So this whole diet change pretty much sucks from his point of view. Mine and the kids too--because I am on a crash course learning how to implement it, and because the kids are subject to this new way of eating too.

The pills....I seriously gag just thinking about trying to get all of them down. His daily med list consists of:

• Zofran and Compazine (8hr and 4hr anti-nausea meds)
•  Lomotil (anti-diarrhea med)
• Critical Care Probiotics
• Vitamin D
• Vitamin B Complex
• Calcium
• Barley (Helps keep his body pH alkaline)
• L-Glutamine Powder
• Gleevec
• Tylenol or Ibuprofen (for lingering pain after muscle spasms/cramps, and for back pain)
• Melatonin
• Ambien (rotated with the melatonin to help him sleep through the night)

And he takes them on this schedule:

• 2 upon waking (Compazine and Lomotil)
• 2-3 more within first few hours of the day (Lomotil)
• 3-4 more anti-nausea pills throughout the day, every 4 hours, sometimes both at once
• 4 Barley before first meal of the day
• 3 with lunch (Probiotic, Vitamin D, Vitamin B)
• L-Glutamine Powder with lunch (mixed into some part of his meal)
• 5 at bedtime (2 Calciums, Gleevec, Zofran, and one of the sleep aids) 

He has just within the past week started experiencing the muscle cramps, another side effect of the Gleevec They are like a charlie horse, but all over. His hands curl up and are locked into that position, his feet draw up and inward, his legs bulge out in knots with the muscle contractions, his back spasms and clenches up in his lower back, and he is helpless when this happens. We can't rub the knots out or make them relax, he just has to endure it until it's done. Afterward he is sore as though he worked out too hard. He has degenerative disc disease in his lower back, so between that constant pain and the now frequent muscle soreness he takes the Ibuprofen or Tylenol more often than he used to. Because it can be so hard on his already beaten-up stomach, he doesn't take it until he can't stand the pain anymore, but that is far more often than it ever used to be.

Finally, his mind is a little fuzzy now. He has a hard time remembering detail things, like his pill schedule. He forgets what he is trying to say before he says it sometimes, and he loses track of what he was doing in the middle of it now and then. These things stand out to me because he's always worked exactly the opposite way--completely detail oriented, focused, and efficient. Whereas I began forgetting things and being unable to speak a complete thought 3 children ago. :))

As I've been told, none of the symptoms I've listed are all that bad. We all experience them sometimes. The difference here is that these symptoms are now Ryan's life. He doesn't just experience them now and then, he lives with every single one on an almost daily basis. The moments when he's not dealing with any of them are very very few. And if you could just for a second remember how you felt the last time you experienced anything I've shared here, then imagine how it would feel if it never went away, never stopped. Imagine knowing that feeling is what you have to look forward every day in your future. If you see him, and you think he looks good or great even "for having cancer" by all means tell him that!!! Tell me that!!! We know what a blessing it is, how gently this cancer is treating him, and we give thanks every single day for that! There is an irony in that though. It's gentle on him by comparison to some of what we've seen at CTCA...but it's still cancer. It's still incurable. It's still an opponent to our future. One which, God willing, Ryan can hold his own against for a good while. But an opponent that ultimately has the upper hand and which science says will win. My faith demands otherwise, but that's a different post.

Those are the facts, all that I can think of right now, in regards to the side effects of the cancer and the treatment. This is our life now, and it couldn't possibly be any more different from what we always planned...from what we were living just a few months ago. Nothing for that but to just keep moving forward.

We are amazed by the support we've been given, and we thank God and various people every single day. But we don't expect anyone else to live through this with us. This is our life and our experience and I share it so anyone who wants to know, who wants to understand, has the opportunity to do so. But honestly, more so, I share it so that I can maintain an out stretched hand for others to grab hold of. It's not all pretty, or even palatable at times, but it's life with cancer. It's our life. And I won't for a second ever accept that I can't use it to provide something of worth to someone else living through it. I will gladly walk with anyone who finds themselves on this road at any time, and the sharing of these sorts of details is done for that purpose.

Share what you can or want to with others. Follow along with us for as long as you want to. Skip the gross stuff if you want to, no judgement here because I surely would if I could. Forget about us and live your life as though it can never happen to you, and enjoy every second of that!!! Because once it has touched you, life will never ever be that simple again. And above all else, if you need me, if we can help someone else on this road in any way, please reach out, please let me know! I don't have much to offer, but I sure can talk a lot, and occasionally just listen, and I'd love to laugh with you when your up to it! <3