So my friend, Laura gave me this bracelet
Confessions of a Cancer Patient
Sometimes unloading a random heap of honesty is just what the doctor ordered. Ready?
Want to know what chemo is like?
My husband, aka, my driver, chef, and wiper of tears on bad days, takes me to the cancer treatment center.
In Pittsburgh, there is an enormous, fancy, well funded cancer treatment center called Hillman. It’s got sculptures, fountains and free lunch. The place I go? Is not that. But it’s close to my house and I like my doctor, so I’m ok with a boring, clinical setting. We arrive and wait a bit in the waiting room. I always notice the people there. I am always the youngest and seem the least sick. I’m never sure how to feel about that. I’m tempted to feel a little sorry for myself because, geez, these people typically have 30 years on me at least. But on the other hand, I’m feeling good enough to take a shower and put on lipstick and earrings and wear boots that once, an elderly but sassy patient loudly pointed out were not worn by “nice girls back in her day.” So mostly I feel thankful that, at least so far, we don’t really need to use the “cancer patient only” parking spaces.
So we get called back and they take my vitals. They then access Mort the Port. Mort is located below my collarbone on my left side. He’s about the size of a peach pit and he makes a weird little bump.
Via Mort, they can draw blood and give me medication. They also have to flush him with saline, which makes my mouth taste like metal for some reason. It is weird and gross. They then give me my pre-meds which include some fluids, steroids and anti-nausea medication. About then I meet with my doctor who is about my age, Indian, friendly and funny. I like him a lot. So far we’ve only gotten good news from him, such as stellar blood work and so far no evidence of cancer cropping up in other places. So my meetings with him have been pleasant and positive. He says I’m a trouper and he is impressed with my staying active, working, etc.
Then I head to the treatment area. It’s a large room with about 10 chemo stations. A lot of the people there are pretty sick. But most have a companion (spouse or friend or relative) with them and everyone seems to stay pretty positive even if they are weak and not feeling well. They hook me up to my IV chemo, a drug that causes all kinds of weird side effects. But during the infusion time, nothing major happens. My mom arrives. My husband goes to work. We chat, play Scrabble.
I watch hilarious videos on You Tube. Have silly text conversations. Answer work emails. This all takes about 3 hours. It’s afterward that things get weird.
Different types of cancer require different types of chemo. So mine may be different than someone with, say, breast cancer. Plus even the same drug may affect two people differently. So this is just what has happened to me so far. When I leave the center, I have to keep my hands and feet warm because the cold paralyzes them and makes it feel like they are being stung by a swarm of bees. And I cannot breathe in cool/cold air. If I do, my breathing becomes like someone who has just climbed 5 flights of stairs quickly. I’m out of breath and cannot “catch” it even though I am not at all over-exerted. The cold air paralyzes and causes spasms. It’s very weird. So I wear a scarf and keep it tight over my face. Mind you, it’s only been about 45 degrees so far. So, I’m sweating because I’m wearing gloves and warm socks and a scarf. It is very hard to explain to someone that you are both overheated and fearful of letting the cold get to you. People have a hard time understanding this, but I wouldn’t understand it either.
The cold sensitivity also includes food and drink. Can’t ingest anything cooler than room temperature. If I do, it feels like I’m swallowing tiny porcupines. This is tough because dehydration is a major risk with these medications and one can only drink so much hot tea. But I’m becoming a bit of a tea snob.
Also, anything sour, sweet or pungent (like a sharp cheese) is off limits. It feels like I just took a giant swig of pure lemon juice. So my diet for a week or so is warm and bland. Which is fine, because I am also nauseous. Not like toilet-hugging, stomach flu nauseous. Just unsettled and unpleasant. Nothing sounds good except, say, crackers, macaroni and cheese, toast. You get the idea.
A new side effect this time around is muscle aches. I also got a flu shot (my first ever) so maybe it’s from that. But this is for the birds. I keep waiting for a magical fairy massage therapist that does house calls to show up.
Another new side effect is that cool air or tears hurt my eyes. That’s just great. Because, you know, you never feel like crying when you have cancer. Honestly this one is just funny to me. Like…seriously?! My new motto is “There is no crying after chemo!” Seriously, I cried a little bit yesterday and immediately decided that there will absolutely be no more of that until this stuff wears off a bit. A friend’s daughter sent me a beautiful painting of a stained glass window from her church today. It was so sweet I got a tiny bit weepy and had to be like “Nope. No way. This is not adorable at all.”
So, it will be like this for a while. But it gets better. I still have to take the oral medication for two weeks, but my body seems to tolerate that much better than the IV chemo I get. Now, lest you think I’m just sitting here feeling bad and sorry for myself…I’d like to end with some gratitude.
I’m grateful for my husband handling everything while I am pretty much just capable of getting through the day. I’m thankful for my mom making sure I have everything I need and taking me out when I’m up for it. I’m thankful for the awesome care packages and cards and texts and shout outs on Facebook. I’m thankful that people care enough to read this blog. I’m thankful I’m not sicker. I’m thankful that God has been faithful every step of the way, giving me hope when I need it, grace when I need it and peace the entire time. I sincerely am filled with peace and even joy almost all of the time. Cancer does some terrible things. But it is making me tougher, wiser, kinder and more faithful every day. So, I’m grateful for this experience, even the messy, painful parts. Besides…I’m a fighter, yo.
Tough cookies
So this journey took an unexpected turn when my lovely friend, Laura, left this world unexpectedly. You can read about her HERE. She was battling cervical cancer like a real badass when suddenly the cancer just went out of control. A little while in the hospital, docs trying hard to stop it or slow it down. But it was her time. She knew it. Posted on Facebook shortly before that she guessed her number had been called. That she loves us all to the moon and back. And then she was gone. I still can’t believe it. The very toughest of cookies.
There is simply no way but forward.
This thought occurred to me recently as they popped the needle into Mort the Port to take some blood and, as they do every three weeks, make sure I didn’t go ahead and get myself knocked up between three weeks ago and now. (What do they think is going ON in my house?? I must look very, verrray sexy to them.)
Or maybe Kevin does.
So, I can’t just sit down and languish until the vultures come for me. There is no way but forward. This thought keeps coming into my head. Maybe it’s just a sensible notion. Maybe it’s the Holy Spirit nudging me along. Maybe Laura sent me that wisp of a thought that swirled its way through the clouds and rainbows, as she left this world, making its way toward me as she came into God’s glorious presence. Whatever brought it to me, it’s true. Forward is the way.
People tell me they admire my strength. That I’m a proverbial Tough Cookie. Am I? I’m never quite sure how to take that because 1. I’m leaning real hard on God right now. 2. I’m not exactly doing this alone – I’m so crazy blessed to have the best army of food-makers, child-watchers, juice-deliverers, jewelry-senders, scarf-givers, flower-bringers and prayer warriors in all the land! 3. I do feel angry, sad and a sense of disbelief at times. (I just choose to usher those emotions out the door after a short but meaningful visit.). Now, on the other hand, I’m also motivated, persistent and stubborn as a grumpy mule.
So when someone says that to me, I am filled with conflicting emotions and corresponding potential responses: “Thanks! No I’m not. I’m actually very sad and tired today. Me? Strong? Thanks for noticing. You’re nuts. I’m strong because of people like you helping me. I am strong aren’t I? I’m not strong – just a little crazy. I’m a total badass. I’m as strong as a newborn kitten. I’m a fraud! Its all God – I’m nothing without Him. I am pretty awesome, huh? I can’t believe I have this many people fooled. Bring it on, Cancer! I should really be wearing actual red Wonder Woman boots. It’s because of all the prayers. I’m hungry – maybe you’d like to help me be strong by making me a vegan-paleo-gluten free-organic-nonGMO sandwich?”
Chemo sucks. (How do I hate thee? Let me count the ways.) Friends leaving this world too soon is the worst – There is a Laura shaped space in my heart that will always feel empty. Cancer is a mean, nasty, violent thing. But there is no way but forward. There is no way to be but strong. Not because anyone can do it alone or because we’re looking to impress anyone. I’m not talking about ACTING strong. I’m saying let’s BE strong. Strong is admitting you’re weak and need help. Strong is going to work even though you don’t feel quite right – because you are ok with looking less than your best. Strong is also staying home because Lord knows the world goes on without us. Strong is striving hard but knowing when to let someone else carry you for a bit. Strong is laughing at the absurdity of it all. Strong is knowing, 1. without God, we’re totally screwed and 2. that it takes a lifetime to begin to grasp His infinite goodness. Strong is having perspective that is not limited to today’s pain and tomorrow’s fears. Rather fix your eyes on what is unseen. For what is seen is temporary; what is unseen is eternal.
Forward is the way. Strong is the way. God is the way.
Good grief
Grief feels pretty bad.
Laura taught me…
My friend died last night. My sweet beautiful friend went rounds against cancer, fighting hard while living gracefully. As it stole her energy, her comfort and her hair, what it failed to steal was her spirit. Instead, her soul strengthened through the journey and reached out beyond her inner circle to everyone who knew her, like a rainbow whirlwind, sweeping up others with her love and joy.
Milestones on the Cancer Journey
So I had major abdominal surgery six weeks ago. It’s the thing that launched this crazy situation we’re in. We thought the surgery was The Thing to worry about getting through. Little did we know that was a cheerful, sunny walk in the park that led to the scary, poorly lit, ivy covered, rusty gate marked CANCER that we had to walk through. I have this tendency to wave my hand dismissively at that surgery. The surgeon who performed it did an excellent job and while his bedside manner made me want to hide under the covers, he removed not only the mass that caused this mess, by not screwing anything up, he also removed many obstacles for me. The connection could have leaked. I could have ended up with a colostomy bag (eeeeewwwwww.) There could have been a massive infection. All kinds of things could have gone wrong which could have jeopardized my life or delayed treating the cancer for six months.
I have been pain free from my surgery for about three weeks. I had a very fast recovery which I attribute to largely to God answering about one million people’s prayers and a little bit of my sheer, mule-like will. See, the doc not so politely noted that I am not a particularly thin person and lingered on the notion several times that due to that, it would probably take me a very long time to recover. To which I thought “Awww,that’s so cute how you don’t know who you’re dealing with, here.” And I basically said “Hey, you do the surgery right and then get out of my way.” Jagoff.
So, naturally, I was zooming up and down the hallways by the second day post-op, sweating and muttering swear words under my breath like a crazy person, with that stupid IV tower clunking along, just to spite him. I walked three times as far each day as they suggested I try to and they released me from the hospital 3 days earlier than expected. Take that, Doc. Also, I registered for a 5K that will take place a couple of days after my final chemo treatment. I will be there. I will finish. Even if I have to crawl.
Some of this post is about the will to accomplish that which seems difficult, overcoming obstacles and basically telling a guy with 12 years of post-secondary education who would go on to essentially save your life, to shove it. But it’s also about milestones.
Successful surgery. Awesome.
Getting discharged early. Great.
First “solid” food. Yum.
Returning to work to be with my crew.
Mort the Port is installed.
Starting treatment.
But the best thing, by far, happened yesterday. It’s been six weeks since I was allowed to lift anything heavier than a gallon of milk. That is, well, most things. Including a 40 pound preschooler. She’s been patient and understanding that she can’t torpedo down the hallway and launch her adorable self at me. She’s been gentle and careful. Until this moment…
Cancer is funny.
Oh, calm down. Yes, yes, we know. Cancer is terrible. Trrrrblll. It steals, kills and destroys. I could make a very long list of how cancer is very unfunny. Sad. Scary. Depressing. But! Also…funny.
First, there’s the silliness that happens when I come out of surgeries and procedures. My first procedure, I came to talking about chicken tenders and an octopus. My big surgery, I spent the hour or two post-op groggily but loudly and insistently explaining to any of the medical staff who would listen (and those who chose not to) in the recovery room that I was ready to be moved up to my hospital room. A surgeon would hurry by and I would be like “Sir! Sir, I’m ready to go to my room. Excuse me! Hey! I’m all set here.” And when they seemed like they were going to take the guy next to me first, I started saying loudly “I need a transport here. Right here. I’m next. Transport. Can you transport me? How about you?” Obnoxious.
I find my scars to be funny. I have a big scar on my belly button and one on my upper chest area. It’s a good thing I ain’t no super model. Because it looks like a blind, drunken monkey stitched me up. Here is the one on/in/near my belly button. Are they kidding me?! You can’t even tell what’s going on here, can you? This is my belly button now. Awesome.
People say weird things when they find out you have cancer. Of course some people say incredible, wonderful, encouraging things. And people assume a lot of things. That I’m already bald. That I’m not working. That I’m going to die. That I can’t have more kids.
I have funny conversations with people. Especially about how I’m now going to maybe possibly be vegan/paleo/vegetarian/dairy-free/all organic or whatever.
Hospital stuff is funny. Like these legs things.
And this thing. That looks like a throw back from wilder days.
And this. Because it’s fun to freak out the nurses when you’re asleep.
Thankful for Cancer
What!?
Thankful FOR cancer? Yup. I know, it’s crazy. Let me explain.
Do I enjoy having cancer? No. I am praying like crazy every day that all of the cancer cells are gone and they never come back. I am kind of mad that I have cancer. I mean, it’s totally not, like, fair. Not that anyone deserves it. No one does. Or maybe we all do, depending on how deep you want to get from a theological perspective. But I definitely hate it that I have cancer. I hate it that my life has been so totally disrupted. I mean, I’m busy. Not just busy getting my nails done or something, but busy raising a daughter to be a (hopefully) really great person. Busy raising the operating budget of a large nonprofit organization that helps homeless people. Busy kicking everyone in my league’s butt at Fantasy Football. You know…important things. I do not like feeling tired. I am nervous I will lose my hair (but maybe just the hair that enjoys to appear on my upper lip? Please, Lord!) I hate it that I have to be so “all about me.” I like to help other people with their problems. It’s unnatural for me to be the recipient. I hate all of this medicine I take. I am tired of doc appointments. My hands and feet don’t feel normal. So…don’t get me wrong. Cancer blows.
But I’m still thankful. I mean, what good does sitting around crying and worrying about it do? Bitterness is dangerous. It chokes everything around it. Have you met someone you would describe as bitter – embittered by some bad thing they feel happened to them? Do you want to hang out with them? Me neither. Some emotions like fear and sorrow are legit, of course. It would be inauthentic to pretend they don’t exist. But, in my opinion, they ought to be acknowledged, invited to stay for a short while and then politely asked to leave so there is room for better emotions like hope and peace and confidence. The long and short of it is this: God is working together all things for my good and His glory. Sometimes it takes a little effort to bring our minds back to that truth. But what a solid place to live from!
I am thankful to be thinking about the things I am thinking about, in terms of who God is, who we are and how we are to approach life. See previous blog entries for a lot of thoughts about that. I am thankful that it is possible to have HOPE every day. I am thankful I am not sicker. I can drive and walk and work. THANKFUL for that.
I am thankful that this has pushed me to think seriously about what I eat and what products I use. I have learned a lot. I have also confused myself and stressed myself out quite a bit. But I’m learning new things.
I am thankful that cancer has brought a few familiar faces back into my life. We all let friendships fade for any number of reasons. But serious illness snaps us all to attention and reminds us how much we love some of the best people we’ve had the blessing to know.
I am so thankful for the kind things people have done for me. Seriously! So much niceness! So much thoughtful generosity. Just this week:
-meals delivered to or prepared at my house by people who are encouraging my new, developing eating habits.
-someone saved me a parking spot with their car. like “here, I’ll give you this one so you don’t have to walk in the cold.”
-home-roasted coffee beans, delivered to my desk
-lovely visits over lunch at favorite restaurants
-treats dropped off with sweet notes
-offers of child care
-wine deliveries
-a text that meant the world to me
-people sharing my blog with others – I can’t believe anyone but my mom reads this, so that is pretty cool.
Being thankful for something that on the surface is very bad. It’s the stuff Scripture is made of. The last shall be first, the first shall be last. Weakness leads to real stregnth. To receive, we must give. Jesus won it all by the humble act of losing everything. Rejoice in ALL circumstances. (Not just the ones that involve cake and ice cream or healthy babies or a sale at Anthropologie.)
I am thankful for the perspective that comes from a diagnosis like this that points to toward valuing each moment and each day a little more. Seeing more clearly, noticing things I haven’t before. Directing my thoughts toward things that are worthy of my brainspace. “Did I make it count, today?” I ask myself. Was today as rad as it could have been? Did I love as fully as I can? Did I let go of the things not meant for me, and cling to the big, wonderful things? Did I trust God more today than yesterday? Did I yield my own will to His? Did I look for the opportunities set before me? I may have many more days on this earth. But if I have one or 100 or 20,000…I’m living like I mean it, yo. That is something to be thankful for.
Perspective
So they are saying that 10,000 people died in the typhoon that hit the Philippines. Can you even fathom that? It’s a half full hockey area, roughly. When I read numbers like that in the same sentence as the word “died” I kind of automatically shut down and decide to think about something else. My brain finds it difficult to compute. My heart doesn’t have the capacity for the level of grief that such a situation requires. My spirit rages at the seeming injustice. I look heavenward and give God the stink eye.