I’m not sure this post title will still fit when I’m done but I’ve had these words in my mind since I sat down in the chemo chair so I’m sticking with it. I apologize to Mrs. Merryman and Mrs. Palmer at FBA for titling my paper before I have a thesis or an outline. But, given the circumstances, I have a hunch that they’ll forgive me. And, it’s 11:17pm as I start so maybe this entry needs multiple disclaimers. Tonight, I think I write for me more than y’all. But, since y’all have been more than gracious to ‘follow’ (I never even knew about that feature in this whole new world of blogging and as I told a friend recently I don’t think I’d read my own blog if it wasn’t emailed to me!) or more disciplined than I am and regularly remember to come check the blog and check on us, I am thankful that I have a reason to actually document my thoughts. For me, if not for y’all. So, if for nothing else, thanks for being a sounding board for me to process all that I’m learning and experiencing! And, of course, as you PRAY we are blessed even more. Blessings one upon another. Sounds familiar huh?!
I am such a novice that I didn’t even know until last night that I could see by name the people who are ‘following’ and recieve these entries via email – and that was a walk down memory lane of friends from childhood, neighbors growing up, old co workers, parents of friends, college friends, teachers, and many close friends who care to know and pray. Thank you friends – and neighbors, classmates, coworkers:) I know not many of you are gonna comment (I rarely do on others’ blogs – even written by closest friends!) and, in fact, it took me 2 entries on my own site to even find the comments so big props to you who do! But the simple fact that y’all will come to this site or ‘follow’ and follow the story God is writing is such an unbelievable reminder that we are not alone. And for those of you that also comment, text, and send emails, you encourage and strengthen us as well. But, if you just read and PRAY – that’s the greatest gift. Thank you.
However, as I broach the blog topic, I admit that it can be totally unhealthy for me too. I had no idea I would know how many people read it and follow it. That’s really not a good thing. I can be a slave to performance so sometimes second-guess something I wrote or even wonder if very many people care to read it. Yuck. As I told my friend Jenn, how does my ugly people pleasing and performance addition and love of approval show its ugly head even in cancer blog entries?! And, last night, another friend forwarded me an entry from another young girl at church with breast cancer and I read one of her entries and had to quit because I was comparing myself with her spiritual response and what God is teaching her and how amazing her husband said she was … seriously?! Needless to say, I quit reading and started confessing. And asked the Lord if I’m missing anything in this journey because hers was wrought with much more feeling and tears and maybe I’m just not there yet (she’s a couple months ahead of us) but it even made me question my emotional and spiritual depth. Oh my. Confessions of a crazy cancer patient.
So why am I up writing at 11:34? Well, I probably shouldn’t be. I couldn’t go to sleep so said to Scott, “I can’t sleep … would it bug you if I got up to try and write?” He said, “I think you should just try a little harder to go to sleep.” I liberally interpreted that as “why don’t you at least wait until I get to sleep?!” And, thankfully, when I was still wide awake with lots of thoughts in my head :10 later and he was off to la-la-land, I decided that was permission enough. I still don’t think he’s missed me in there.
I don’t know why but today was a weird and wonderful Wednesday. So far, it’s wonderful because I feel great. Was definitely knocked out again by the Benadryl and slept the whole time we were there but the anti-nausea in the drip seemed to be working great and, so far, no mad dashes to the bathroom. I took a big fat nap when I got home but Marisa stayed with Linc this morning and was happy to stay until she could pass the baton to Gigi at 4ish so I could keep sleeping. Scott came home and even went for a wog – the unashamed ‘walk jog’ alternating or just really slow jog to enjoy the beautiful weather. It was wonderful to be outside enjoying my health and weather and baby and husband. I even ‘cooked’ dinner though really preparation is better description because Marisa had brought delicious pesto sauce and I wouldn’t exactly call cooking noodles or warming the pizza Amy brought as ‘cooking’ but I did prepare a salad and I did get it all on the table for Scott and Gigi and I did feel relatively good and normal and there’s something about maintaining some basic privileges and joys (like preparing meal for your husband and friend) that just makes me feel happy these days. And healthy. And for both I’m real grateful.
But, back to chemo where I first started thinking this was a ‘weird and wonderful Wednesday.’ As I mentioned before, I didn’t want chemo before the weekend but they can’t just move me from Friday one week to Wednesday the next (when needs to be on a 7 day cycle) but they agreed to step me back a day/week so last week was Thursday and now, going forward, chemo is on Wednesday. The waiting room was about half the size it normally is and, apparently, that’s because Wednesdays are so much less busy. Woohoo. Every other week we’ve waited at least an hour – and today we hardly had time to go get coffee (and meet an amazingly sweet woman and believer from Kenya named Esther who works there – I heart Africans!) and get back to the waiting room before they called our name. We were called so quickly that our drugs weren’t even all mixed yet so we talked to the nurse awhile before we get started and I got teary in a way I haven’t before with just incredible gratitude for medicine! It’s not just the medicine that is going to kill (Lord willing) the cancer but there are so manyother amazing medical advances that make the hard drugs not so hard. They have a spray that numbs my skin before they stick the needle in the port. They also have an expensive lotion that numbs the skin and, thanks to Travis Shoemake’s hand-me-downs (prescription ointment is $50 so I had opted for the free cold spray!), I now have both. And it’s unpleasant but certainly very bearable to have a needle stuck in my skin every week. And, and then there’s the port – an amazing device under my skin that keeps me from having an IV every week and a needle sticking out of my arm. Then, in that port, they are able to give me the medicines needed for cancer but also an anti-nausea medicine, an anti-reaction to restless leg, saline to clean out the port (that it is crazy because they put the saline in the port but all of a sudden it’s an intense saline taste in the mouth!), and can draw more blood as needed with fewer sticks (which, so far, though I’ve never dreaded needles before, the pre-chemo blood draws and needless have become my least favorite part of the day). But, even there, I have marveled at the advances – they can use a pretty tiny needle to get to my blood and can just keep swapping out the viles and filling them up for other samples without ever re-sticking me. As I talked through this with my nurse she said the medical advances for side effects has come a long way in a short time. She said “it wasn’t that long ago that folks were sitting in the chairs having to hold their arms straight because of a needle and puking their guts out at the same time.” And I was teary-eyed. Scott said, “you’re emotional today …what is it?” and all I could say was that they were tears of gratitude because I just keep seeing mercy medicines everywhere we turn.
Today, all of that conversation happened in a private infusion room. We’d never been in one though we’d seen them. At first we thought it was cool and fun – and, it turned out to be great for Scott. He converted the desk and sink area into a drafting table, laid out his plans, held one end down with the tv remote and and the other end with a Better Homes & Gardens magazine and just went to work on estimating project costs. I couldn’t resist including the picture of the general contractor and chemo companion hard at work. I slept for 2 hours and he worked! And, there we go again, something else I am thankful for and told him as we left. I know a lot of husbands wouldn’t get to be weekly chemo companions based on work schedules. But, Scott has been able to lean on his partner (thanks, Dave!) and schedule client meetings around our doctor’s appointments and sits next to me in an infusion chair or in the waiting room working on projects or on the phone talking about cabinet drawings, framing, fireplaces, and tile design. All the while picking up and packing up as we move from waiting room for labs to waiting room for doctor to doctor’s office to waiting room for infusion then to the infusion room. While sometimes I get slightly annoyed and ask if his sub-contractors, Manuel or Tony or Georgie or Raul, can wait while we at least talk to the doctor. [Side story: No lie! One week he was on hold with the electric company and had already been talking to them for at least :45 so, of course, he didn’t want to lose his place in the queue but, when the doctor came in, instead of hanging up (as my eyes clearly communicated to do!), he just slid the phone under his leg with hold music and all … seriously?! If looks could kill …). But, more often than not, I’m just so very grateful that he’s with me and compassionate and carries my bag and makes me laugh. Even if he sometimes doesn’t have good discernment on when to go ahead and hang up:)
He also makes great observations. As we left our private infusion room after my treatment and passed the other patients in the main area, he said: “I missed our friends today.” I couldn’t agree more. The chairs are pretty spread out so it’s not easy to talk and most folks look sick or tired and sleep most of the time but, somehow, there’s a crazy camaraderie even without words. Scott was looking for folks we ‘know’ but don’t ‘know.’ That’s part of the weirdness of this new world. And, as Scott also said, it’s also sci-fi material with rows of chairs and everybody being pumped with poison. We don’t know any of their names and since everybody is on a different schedule we haven’t seen too many people more than once. But there’s something weird and powerful and wonderful in the shared experience as we sit a couple chairs apart but are all fighting the same battle with similar drugs and similar side effects.
And I guess that shared reality explains an interestingly odd but really sweet event that happened while we were in the waiting room last week. Scott and I had our backs to the main entrance to the actual infusion area but, from behind us, after the doors opened, we heard a very loud, “All Done!” as a woman and her husband walked out with a spring in their step (not something you see much around there). It took a second for those words to register. I’d actually just been reading something about babies and food so, as many moms will understand, I turned expecting to see sign language with her hands in the air and shaking like I’d like Linc to do when he’s ‘all done’ eating! But, when her words clicked in my brain, I started clapping – as did the rest of the waiting room. I doubt any of us knew her. But we all knew what she meant and what she was celebrating. She was “All Done!” with chemotherapy. And we celebrated with her. And I’m teary eyed again as I type. Oh, there is a weird and wonderful camaraderie in a shared journey or battle – even without knowing them by name.
The only kind-of-sort-of-hard-part about today was also on our exit as we walked past the rows of chairs of fellow patients. One looked familiar to Scott and I but we couldn’t place her. [Lori, we both thought it was you for a second because you’re the only familiar face we think we might see!] Then, as we left the main doors of infusion area we were met with another familiar face and I was able to connect the dots. The woman coming in with lunch was the mother of the girl we recognized in the chair. They were both in our chemo class the first week we had chemotherapy. But, today, that same girl who was also blond and about my age, sat there bald. And I didn’t recognize her. When Scott and I both realized who it was and how different she looked, he said, “that made you sad, didn’t it?” And, as I told him, it wasn’t a loss of hair in the vanity sense but, because all of us associate baldness with cancer, it was just a vivid picture of her sickness. 3.5 weeks ago she had looked so ‘normal’ and ‘healthy’ (same as I still feel) but, now, without hair, she looks so very different. And sick. And I was sad. Our day is coming.
But, that day is not here yet and I have been able, by the power and grace of God, to have a hard time catching up with the reality of today so haven’t been overly anxious about that particular tomorrow. It’s coming, for sure. But, based on the order of my drugs, it is coming a little slower and maybe that’s more evidence of the Lord’s kindness that I have a little more time to get my head around it (no pun intended).
One last thought from today – and, at this point, maybe I should be renaming this Thankful Thursday but let’s go with what we’ve got even if it’s :4 after midnight. Today, my friend Barron sent me some journal thoughts written a couple of years ago from his pastor Andy who had colon cancer. [And, before I get further, it’s probably a good time to tell you that, in general, I can hardly process my own journey and really want to spend more reading time with Jesus so this isn’t a request for more stories because, frankly, sometimes they’re just overwhelming. BUT, in this case, he sent me some musings that just so perfectly hit home about the ‘new normal’ and some things I’d recently wrestled with.] One was about the clipboard mania and endless forms all asking the same questions. I’ve told Scott I don’t know why all of these answers can’t be answered once and passed around among doctors. Thankfully for me, my health history is crazy boring because they want every medical event, doctors name, date of event, office phone number and practically his alma mater and wife’s name on the form. The consultant in me sometimes sees opportunities for “process improvements”:) Andy ranted along the same lines about how many crazy questions you can possibly be asked – and by how many different people. It made me laugh. But, then, he also wrote something else that made me think. He wrote about “how are you doing?” and how difficult of a question that has become. As he elaborated, the question has so many different ‘questions behind the question’ or ‘statements behind the question’ like: “I’m just checking in and that’s how we check in in our culture so what else do I say?”, “I care”, “are you about to puke?”, “how are you emotionally?”, “how are you spiritually?”, “how are you physically?”, “are you dying?”, or “I’m thinking about you right now.” And, depending on the day and the asker and my current state, I can’t tell y’all how often I read a ‘how are you doing?’ text or respond to a ‘how are you doing?’ greeting at church or the gym or anywhere else and just have an awkward pause in conversation or a blank stare at my phone or computer because I have no idea how to answer that! But, the truth is, what I loved about Andy’s article was that it gave me full permission to answer as I’ve been answering (but feeling a little odd or phony or crazy or confused in doing so), “I’m great.” Or, “We’re doing well.” Or, “I feel pretty good.” And, sometimes when they ask I have no idea if they know I have cancer or not but, whether they expect a deeper answer (for those that know what’s going on) or if they just expected a surface answer (common courtesy question), the answer is truly the same. I’m great. I can’t really explain it but by the grace of God and, as Andy said, when you’re in the hands of the Creator who has the days of your life already numbered and ordained there’s an incredible peace and even joy and you can say with confidence, I’m great. I really am. And, thanks be to God, if that changes and I am about to die (don’t foresee that) or am in tons of pain spiritually or emotionally or physically, I pray that I’ll have the courage and wisdom in how to communicate that too. But, for now, it’s just with incredible joy that I write that I’m wonderful. Truly. Covered in your prayers, covered in the care of friends, and covered by an awesome God. Really overwhelmed with His goodness to me by reading Titus 3 (specifically vs 1-8) this week and again with Scott today. I once was foolish and disobedient. But the kindness and love of God my Savior appeared. And now I am saved by His mercy and grace – not by any righteous things I’ve done. And I have renewal, rebirth, and washing by His Spirit who was poured out generously through my Savior Jesus Christ. And I have the hope of eternal life in Jesus. Really, I’m great. And, for every person that might read this, I pray you can also be great in the same confidence of Christ as your Savior.
And, if you want to ask me or text me or check in, maybe you could help me by asking the question behind the question or just stating the statement on your heart – thinking of me, praying for me, or whatever. Because, the truth is, the power of Andy’s entry was in part that he made me feel less crazy for not having a clue how to answer this often-asked question. And, as you seek to walk with me, I thank you for learning with me. And, if you ask the generic “how are you doing?”, you might just hear or read “Great!” And, Lord willing, that will be true in months to come as it is today. And, if not, I’m sure He’s good and big enough to sustain my “Not So Great!” as well.
Thanks for reading and sharing my weird and wonderful Wednesday (now Thankful Thursday) with me.