This Spring

I know it has been a while since I’ve posted. The last few scans have been stable, and other than an upset stomach we passed around and around at home (between Jason and me and our 4 little germ factories). I ended up losing some weight, but that has stopped for now. It really scared me to lose the weight. I’ve kept some extra weight on during the last 10 years of having babies, but it is gone now. I don’t know what I should weigh, but my weight is at about my early-marriage weight. I discussed this with my naturopath and he said he doesn’t really worry about my weight for health, but my strength. He suggested doing daily exercises (I chose girl pushups and standing lunges) and slowly increasing the quantity to see if my body can keep it up. I love these kinds of challenges! It has been 6 weeks, and I got up to 30 girl pushups and 30 lunges on each leg, once or twice a day. I saw him again last week and I asked what to do next and he suggested switching to regular pushups hand weights with the lunges. So I’m back to 10 pushups and 20 lunges each day, but they are harder now. Sickness issues have slowed down (although 1 child is struggling this weekend) now that it is summer and we are outside more.

I have a brain MRI this week and a chest/abdomen/pelvic CT scan next week. I will post updates to that when I have some quiet time. It’s amazing how little of that comes around these days. Good heavens, boys are something else. Having little experience living with them, it has been overwhelming to adapt to them now. I love them, just don’t know very well how to show it.

Since I was diagnosed, I have said many times that I’d give up all these lessons if it meant I could give up having cancer. I have come to realize lately that I don’t feel that way anymore. I’m thankful for all that we are learning as a couple and a family. Of course I wish we could learn it an easier way, but it’s really not up to me to plan my path. In this season, God has overwhelmingly given us gifts these last few months. There are people who share their brokenness with me and my boys. Long-term relationships that I have had opportunities to reconcile. Last week I ran into a person who was very pivotal in our marriage, changing its trajectory for the better with a conversation with me and an email to Jason 4 years ago. That interaction with him 4 years ago was like lighting a match, it launched us on a path to work on some ugly patterns that we had developed in our lives and relationship. I couldn’t define what was wrong at the time, but he gently walked me through what I should say to Jason, and a counselor to start seeing. I hadn’t seen him since that conversation, but it was such a gift to see him in person and thank him for the words he said (and didn’t say!) that changed Jason and me.

I’ve reconnected with people from the past, once annoying younger boys who are grown men that now flourish as adults, showing me (and probably others!) love and compassion through their words, hugs and prayers. I got to meet with a friend (and her husband) that I lived with in Israel post-high school. It was a really great few days to spend with her, telling old jokes and being reminded of being loved (as an 18 year old) by a Dutch girl despite some annoying American ways I brought to Israel. And to see that love and acceptance continue from 2000. Jason and I had a chance to chat with my parents’ good friends, who went through some really tough times with my parents. It was incredibly healing to hear their side of the story and experience with them the emotions of those days when I was a teenager.

All of these instances have been a reminder that God is in control, He ordains the people I meet and conversations I have, and He is not done sanctifying and giving to me. He DEFINITELY still loves me, even though he allowed me to get cancer. He will finish the work He began in me, however long I have before dying. Just because I have cancer and I think my last day on earth might come sooner than age 85, it doesn’t mean it will be so. And it really doesn’t change much for me, God is showing me much more of how much He loves me than I allowed Him to show me in my self-sustaining pre-cancer self. If cancer is what it took for me to see Him clearer for who He is, I’d choose cancer again.

Goodbye to Another Friend

A couple weekends ago, I went home for a funeral for my friend, Traci Valerio.  When I graduated from high school I did a “gap year” in Israel.  I worked as a volunteer at a hostel in Haifa, Israel from August 2000-May 2001.  It was run by a missionary family from my home church, the Valerios.  My parents have been friends with them from the young-married-no-kids stage and supported them as missionaries.  I met with them at their house the summer of my senior year, to have dinner at their house with their 3 kids and get the rundown of what I was signing up for.  Which didn’t really occur. There was no way to describe what I would experience.  It was a rich year for me, full of new and helpful sights, sounds, smells, foods, languages, cultures and friends.  My cousin (who had lived overseas) told me “It’s like you grew up in a world made of red and then suddenly move to a world of other colors.  Not only do you learn all about blue and green and purple, but also you can better understand the color red.”  Such a great analogy for the experience, as a girl from small-town Augusta, GA launched into the Middle East.  I loved it and was absolutely sad to leave.  

The Valerios lived in their own apartment at the hostel, so I saw them every day.  Traci, having elementary school age kids, did a lot of managing their household, but she was around us volunteers when she could be.  She would celebrate holidays and invite us into her home, often joined daily “coffee break” (coffee/tea and a snack at 10:30am on the covered porch overlooking the Mediterranean for the hostel workers) and sometimes joined daily pre-breakfast Bible reading time.  In Israel, it was illegal to teach a religion to a child that is different to what the parents believe.  She ran an after-school club called Bible Club at the hostel teaching stories and truths from the Bible once a week to around 50 children (whose parents were fine to send them). The children would learn about Jesus, do crafts, watch a skit, memorize scripture, and have an afternoon snack.  Once in the spring, Paul and Traci took a 5ish day trip to Budapest, Hungary while I lived at their home, shuttling the kids to school, feeding them dinner, popping popcorn for eating while watching movies, tucking them into bed.  It was one of many eye-opening experiences as an 18 year old.  It was just one of the many ways that they lived in their “fishbowl” home, not hiding that stage of life from me but helping me view and understand them in their work as missionaries, disciplers, parents, and grownups.

I came home in May 2001 and started college that fall (my first day of class day was on 9/11), sad to have left Israel and missing a lot of people from Israel.  Israel kicked the Valerios out of the country a couple years after I came back, and they bought a house in the Augusta area (where they still live).  Since they’ve been back in the states, I’d periodically get to visit with them back “home” in Augusta, during college and through my married years. About 8 years ago Traci told me about her cancer journey.  She visited me in Greenville when she came to town a few years later, and though she had recently had her right lung removed she acted like her normal self while we visited over coffee.  She told me about a convo with her oncologist, the one from my church growing up.  He is retired now, but is such a heart person, caring and kind and good at explaining things.  One thing he said to her at an early point in her cancer journey while they discussed the likelihood of the cancer returning was “I can tell you the statistics.  But you and I know and believe in the One who controls our lives.  Really you have a 0% or a 100% chance of this returning.”  So so true, and that statement has been a helpful reality to tell myself these past couple years.  Statistics are helpful, but statistics aside, cancer is either going to take my life or it isn’t.  I am not in control of that decision.  I get so caught up in trying to predict which day or what symptom will make my body come crashing down that I miss the point.  God is in control, not me.  He has given me today, right now, not the next 6 months.  And what a gift that He gives me Himself, community, and many simple gifts as I walk down this path.  He loves me, is taking care of me and my family and I can trust in that again every morning.  Every morning.

Lately

Sorry it has been so long for me to post. For good and bad reasons, I haven’t had the margin to sit and type. Also, I absolutely don’t consider myself a writer, so these posts take me a while to write. I realize this overlaps a bit with Mallory’s previous post!

Since the end of June I have felt different cognitive challenges (dizziness, I can’t come up with a word I want, stopping sentences in the middle for no reason, calling my kids by the wrong name, etc.). While these are normal human experiences for us all at some level, they haven’t consistently been for me and I saw an increasing amount of struggles with them. It has been embarrassing and frustrating. In July, I met with the radiation oncology doctor and had a brain MRI with nothing definitive to show the source of these issues but had a 6 week follow-up brain MRI at the end of August that showed a lot of brain mets. The doctor said a couple hundred tiny ones. When I think about it, it is still so scary to think about the slow growth and progression of disease, particularly the change over those six weeks. That an MRI showed next to nothing one day and six weeks later showed widespread disease haunts and bothers me. What is this disease??

For the brain mets, he recommended whole brain radiation for 15 days, which I did. At Jason’s work. I don’t really have great words for that experience. “Nightmare experience” doesn’t really express it. I am overwhelmed with how smoothly it went. (To be clear, nothing about the staff or the doctor was “nightmarish.” Needing my entire brain radiated at Jason’s workplace was the nightmare). Jason’s coworkers I saw every day were incredibly kind, funny and supportive. But showing up for 3 weeks at that office to get radiation, not meet Jason for lunch or to swap cars, was anxiety-producing. I don’t know how you are supposed to walk through that experience. I did the best I could. Thankfully, each day I had empathetic, encouraging, lovely people there to get me through this. Their normalcy of this treatment was actually calming for me. I felt very well taken care of and supported, but also I wouldn’t recommend ever going there if you don’t have to go.

At the end of radiation, my radiation oncologist asked my oncologist about me getting back on Tagrisso (the targeted therapy drug from last year), so I started back mid-October. My oncologist said that Tagrisso will be an “underlying therapy” to the chemo I’m on and that she’s good to keep me on it as long as it doesn’t interfere with chemo and keeps working in some areas of my body. I feel a lot more cognitively clear than this summer and am thankful to have dropped some side effects for now.

The time since finishing radiation was a time of slow decline and then gradual increase in energy and clarity. I was pretty depleted and tired until the week before Thanksgiving and I feel like I’ve since stabilized to a new normal again. I get a little more tired but can make it through most days fairly well, and with an afternoon rest time (if I can get it). I’m glad to be feeling stable for this season. The last two Christmases were hard, filled with uncertainty and fear. This December has been easier, lighter, and felt more normal.

Another thing I want to share is from Advent. Our pastoral intern Jonathan Allston mentioned something from the pulpit during church a few weeks ago. He said that Jesus is waiting for us too. I had never thought about it and asked him later. He said in a text, “Like the imagery of the wedding Tim talked about yesterday, Jesus is waiting for that day, waiting for us, just like we’re waiting for him. He longs to make us whole and spotless and become his bride. So it seems there’s the sense of Jesus waiting for us and anticipating that day. Also, if you take the concept of us loving God ‘because he first loved us,’ I think that would apply to all our desires and longings for him. Our longing for him isn’t sourced in ourselves. We long for and wait for Christ because he waits for us. Our waiting is a dim reflection of his.” I have really loved this explanation. Sounds legit to me. I have enjoyed discussing it with others and thinking about when I have a quiet minute to think my own thoughts (which sometimes happens these days!).

Last December 23, I started the aggressive, wearying chemo (Taxol and Carboplatin). There are lots of confusing, not understandable parts of this cancer journey for me. Like all of December last year and the shift from “a-terminal-diagnosis-with-a-daily-pill-that-can-stop-this-freight-train” to “the-pill-isn’t-doing-its-job” and how much that has colored this year. But I have loved the picture that Jonathan’s words paint for me and how much it communicates God’s love and tender care for me and my family. It hasn’t removed the fear of dying/slowly dying that I have, but it gives me such a solid reminder of God’s hand in my life and experience. I don’t understand what He is doing, but knowing that Jesus is waiting for me makes me okay to wait for answers and for Him.

My dear friend Sarah Stewart texted this book excerpt to me a couple of weeks ago and it has been hugely helpful and oh-so-accurate for me!

“Christians faced with terminal illness or imminent death often feel they’re leaving the party before it’s over. They have to go home early. They’re disappointed, thinking of all they’ll miss when they leave. But the truth is, the real party is underway at home—precisely where they’re going. They’re not the ones missing the party; those of us left behind are. (Fortunately, if we know Jesus, we’ll get there eventually.)…Every person reading this book is dying. Perhaps you have reason to believe that death will come very soon. You may be troubled, feeling uncertain, or unready to leave. Make sure of your relationship with Jesus Christ. Be certain that you’re trusting him alone to save you—not anyone or anything else, and certainly not any good works you’ve done. And then allow yourself to get excited about what’s on the other side of death’s door.”

First Day of Radiation Done!

Today has been emotionally exhausting, not a frequent description I have often used.  Physically it has been a pretty good day, who knows what to chalk the difference up to.  I started thinking seriously about today last night, mostly fearful of how brain radiation might change my personality or ability to have normal conversations or laugh at jokes or hold on to short term memories (which, honestly, has never been my strength).  But it has been scary to think about living with the essence of who I am and it changing in my late 30s.  I know a lot of people give up a lot things in life (limbs, loved ones, freedoms) but I have had an easy life up until 2ish years ago.  I got my first bee sting 4 summers ago, I still have never had a cavity or broken a bone, things like that.  One of the most difficult challenges in this cancer journey for me has been to face the limitations that are now in my life.  I’m thankful for the ease and relative painlessness I’ve experienced but I don’t have practice in dealing with hard news about my body’s decay.  It has been difficult to know how to deal with days like today.

This morning when my alarm went off, I couldn’t quit hitting snooze.  Not necessarily because I was tired but mostly because I just didn’t want to face today.  I couldn’t escape the fear that today would bring about the beginning of something permanent, something I don’t get options for but something I just don’t want to do.  As scary as chemo felt, I quickly realized that it was poison, but I won’t carry it around forever.  The poison has left my body.  It seemed terrifying that I’m walking into radiation with the possibility that I’ll be willingly changing who I am.  Forever.  And there are no parallel other options for me to choose.  Like a child, (oh, how many times a day do we face this with our boys??) I don’t feel like I get a choice with what’s in front of me, I just have to face it because someone else told me this is the best thing for me to do today.  I finally said this out loud to Jason, which kinda helped to articulate one of the things I’ve been dreading.  I know that there is a lot of data affirming that radiation is the best thing for me in this state, there’s nothing better in science or medicine that will help me today, but I still don’t want to do it.

Jason and I got the boys to school and then walked on a trail system together this morning.  Where I told him some of my fears and reminded him to keep joking with me even if I don’t seem to get the joke.  I asked some of my specific questions about how today’s treatment would go, some of the questions he could answer and some he couldn’t.  But it was settling to get some answers.  He doesn’t have much direct patient interaction, especially with patients getting my type of treatment.  

As he put it, he wanted to go “through the front door” today.  He didn’t want to be looking over everyone’s shoulder.  I really like that about him.  While he is in charge of managing some of the staff there, he speaks highly of his coworkers and their abilities.  He believes they are capable and don’t need his hand holding to do their jobs.  He believed that before I became a cancer patient.  They treat a lot of people every day and I like to think they would make sure they are treating each patient with care.  There are a nerdy amount of electrons flying around these people!

We got to the appointment on time, got everything settled.  Which is a big part of how I operate, I hate being late!  The actual setup and lying on the table was quicker than I anticipated, the staff offered everything they could to make this physically easier, and it went smoothly.  I’m scheduled to go in every weekday for 3 weeks and then another brain MRI in 6ish weeks.  We were driving away after an hour.  It really was quick, painless, and fairly unlike most medical experiences I’ve had.  Certainly very unlike the long medical oncology appointments that I’ve had so much experience with the last couple years.  Jason and I went out to lunch together and finished out the day.  Tonight we took the kids out for ice cream after dinner which is pretty unusual but it felt like we needed to celebrate together after today.  I’m glad the day is over, it paved the way for my next few weeks.  Fatigue and hair loss are side effects of this radiation but honestly(!) I’ve already given up energy and hair in this process, they weren’t even close to the most traumatic parts for me.  So I’m not too concerned right now about them, although I’ll reserve the right to be sad about them next week or month.

A New Scan Result, A New Course of Treatment

Jason here, providing an update on Lindsey.

Since Lindsey's last brain scan (and based on what was observed then), she's had an intervention of a course of steroids, a "steroid taper," and a spinal tap to evaluate if metastatic cancer cells were present in her cerebrospinal fluid, the fluid that surrounds the brain and spinal cord. The steroid taper may have helped her fatigue and fogginess a bit, but we're not sure of much of a change either way. And, fortunately, the CSF was negative for malignant cells.

Additionally, over the last month, Lindsey and the boys have spent a week at the lake with her extended family, our family of 6 have had a week at the beach, and we've seen our older two start fourth and second grade, respectively. From a family perspective we've had some good times but, from Lindsey's health perspective, she's consistently felt fatigued, foggy-headed, and occasionally lost for words, though not seemed to have progressively gotten worse.

Monday evening, Lindsey had a follow up brain MRI, follow up from the inconclusive findings a little over a month ago. Tuesday morning, we met with her radiation oncologist to review and discuss the scan. I/we were expecting to maybe see a limited number of brain mets as that's what was likely apparent in its earliest stage of presentation over a month ago. But, unfortunately, we received pretty devastating news. Lindsey has widespread metastatic cancer all over her brain. The cancer is diffuse and small but present everywhere and with a significant footprint of disease. The radiation oncologist believes this widespread burden of cancer residue in her brain is the likely cause of Lindsey's fatigue and fogginess. Because of the widespread presence of cancer and because chemo/immuno/targeted therapies don't penetrate the brain effectively (due to blood-brain barrier or Lindsey's cancer's acquired resistance), the only real treatment option available is whole brain radiation. Lindsey is scheduled to start a course of whole brain radiation next week. Expected toxicity from such a treatment is not dissimilar to how she currently feels, fatigued and foggy-headed. So, in a sense, it will be a trade of like-for-like symptoms with the likelihood that this will stay the current progression of cancer spread for a while. We are sort of running out of preferable options, or good options, you could say.

As you can imagine, yesterday was a hard and sad day for us, for Lindsey especially. Please pray for her, and for us, as we process this new reality. Specifically, pray for both of us coming to grips with one awkward and surreal reality: Lindsey will be treated at my workplace. I am a radiation physicist (medical physicist) and Lindsey is now a patient where she’s historically visited me and brought the boys to go see daddy at work. This has been an especially hard reality for Lindsey to face. And it’s been jarring to me as well.

For those who may wonder how she's doing physically, those local and in her sphere of overlap would affirm the following reality: when you see Lindsey, you wouldn't believe that she has cancer advancing like this inside her. She really looks beautiful, healthy, and has her wit and charm about her, as always. Yes, she looks a little tired at times and would tell you that but is very much Lindsey. Receiving this news yesterday is another cruel reminder along this journey of how looks can be deceiving.

We have taken real refuge in the promise found in verse 18 of Psalm 34. (Thank you Mallory for sending as a reminder to Linds yesterday). "The Lord is near to the brokenhearted and saves those who are crushed in spirit."

Thank you all for your continued support and care for us as we walk this journey. For your well wishes, your notes, your tangible gifts, your meals, your help with errands and our kids, and for your prayers, we cannot thank you enough. We feel very loved and supported.

Waiting Game

Mallory here, with a report on Lindsey.

Many of you have reached out for more information after Jason's recent post. Since then, the Edwardses have been able to be with family at the lake, spend time with dear out-of-town friends, and all the other joys that come with summertime.

To follow up Jason's email: Lindsey had an MRI at the end of July to scan for anything in her brain. The scan revealed three small (and we mean small, like 3-5mm) spots. At this time, her doctors are unsure exactly what those spots are, so they've scheduled more imaging (another kind of MRI) for mid-August.

What they are seeing on her most recent scans does not explain the fatigue and other symptoms Lindsey's showing/feeling. So they are also looking at further testing to see if they can find some explanation for her fatigue.

In short, Lindsey is in a waiting period. She's waiting to have more testing, more scans. As Lindsey comes to mind, pray for her as she awaits answers.

If you have any questions, please contact me directly (let's not bombard Jason and Lindsey with lots of follow up questions!) at mallorybcorum [at] gmail [dot] com

Thanks, as always, for caring and loving the Edwards family. If you'd like to support them, read more about that here.

Mallory

Updates on how to support the Edwards Family

Friends of the Edwards Family,

Earlier this summer, Lindsey was feeling good enough to take on her own meal planning and grocery shopping again. It's one of her favorite things to do - plan and cook meals for her family. It was a beautiful summer of doing just that. But, with the return of her fatigue, not knowing exactly what the next few months could look like, and the start of school looming, we have decided that she'd greatly benefit from having meals provided for herself and her family.

Here are the updates to supporting the Edwardses:

THE MEAL TRAIN

• We will be providing the recipes for meals for the family. Due to Lindsey's dietary restrictions and what the boys will eat (I affectionately refer to them as her tiny food critics), it will be a MAJOR blessing to Lindsey to know that the foods being brought over are safe for her and hits with/for the boys. When you sign up, you'll see which recipe you're responsible for. The link to the recipes is in the information section! And, we are aware some of the recipes are unfinished; we’re working on solving that ASAP!

• We are asking for help with snacks for the boys. As Lindsey has said, there are so many boys and they eat so many snacks! Having a bunch of snacks on hand to last a few days at a time will be a blessing to them. A list of snacks the Edwardses prefer is available via the link in the information section!

You can sign up for a meal or to bring snacks here.

SUPPORT FOR ERRANDS/GROCERY SHOPPING

• For out of town folks wanting to help, you can venmo me for a support fund! I, along with another close family friend (Carly), are going to help with grocery shopping and running errands. Your gifts will help us run errands and not have to give Jason and Lindsey another task in reimbursing us! Venmo me at @mal_corum.

Thanks,

Mallory Corum

CT Results

Jason here…

We have received the results of the CT.  

The scan shows an increase in size of Lindsey’s initial lung tumor, which means the conclusion is that the cancer is again growing.  Fortunately, the scan didn’t reveal new sites of disease as apparent at this time, and many previously involved areas in and around Lindsey’s lungs still appear unremarkable.  But, bony metastatic disease remains present as it did when Lindsey first presented a year and a half ago (although a CT scan is not the proper diagnostic tool to determine what’s active in these areas because of the initial disease footprint).

We still need to meet with the medical oncologist next week to learn what the next steps will be.  I suspect further imaging studies will be performed to further determine the extent of new growth so that a plan can be formulated for what to do in our next phase of this journey.

Lindsey continues to feel depleted and tired these days.  She’s not fully herself by way of gusto and energy (or even appetite some days), so that remains concerning to us.  Please continue to pray for her and our care team as we learn more about what’s going on in the coming week(s).  

Feeling Tired…

Greetings friends and family, Jason here with an update…

I apologize for how long it’s been since our last post.  Selfishly, it’s been really nice for us to have a season with a semblance of normalcy and not have to live constantly in light of Lindsey’s diagnosis.  We’ve enjoyed the break from having to interact with this space.

Since our last post, we’ve been able to enjoy the boys and the close of each of their school years.  Lindsey has been to and from the pool (almost) every day (sometimes for two-a-day practices) for the boys this summer.  We have had the sweet gift of cheering Wright and Thomas on during their first swim team season and have enjoyed chasing Henry and Graham around this summer.  Linds and I have also managed to get away for a long weekend and an entire week just the two of us.  Most recently we enjoyed a week in Anguilla, on the same Caribbean beach we went to celebrate our 10th anniversary 6 years ago.  Linds had her 39th birthday in April, I turned 40 in June, and we celebrated our 16th anniversary in early July.  To boot, Lindsey’s hair is returning.  Life has been full and we’ve been so grateful for that.  

That being said, we are unfortunately back with an update and would again ask for prayer.  

Over the last few weeks, Linds has progressively felt more and more tired and not quite her normal self.  This came to my attention while we were away in Anguilla.  It’s made us pause, and, to be honest, it’s made us fearful.  (Personally, I just walk around with a knot in my stomach).  The tiredness Lindsey feels is eerily similar to how she remembered feeling late Fall of 2019, before her initial diagnosis.  It’s possible the tiredness could be explained by having had 6 rounds of chemo, chasing 4 kids all summer and putting up with me, or us just freaking out because of the initial diagnosis, etc…but we’ve received a few bloodwork results over her last two infusion visits that raise concern, enough concern for her medical oncologist to justify scheduling Lindsey’s next CT scan this week instead of in August.  Please be in prayer for her, for us, as we learn the results of this CT in the coming days.  

Psychologically it’s hard for both of us to not overreact and fear bad news and it’s entirely possible we’re merely overreacting.  We certainly hope we are!  But we wanted to share our burden with you tonight and thank you again for continued prayer, care and support during this journey.

Saying Goodbye to a Friend and a Season

This weekend and week have been emotionally tough for me. When I was diagnosed, a couple of friends reached out to Jason saying they knew of someone who has the same cancer. I was reluctant to reach out, but this guy called us. What a gift that first conversation (and subsequent relationship) turned out to be! Steve Baker has been a rock for me through this cancer journey. For reasons I will not know on this side of heaven, he went to be with Jesus on Thursday night.

Our first conversation when he called, we were pulling out of the driveway to have a getaway couple of days in the mountains. It was my 4th day of taking Tagrisso, the magic pill from last year. We talked on speakerphone together for as much of the drive as we could until getting into the mountains. Steve was the first hopeful person I talked to about my diagnosis with real information about what I was facing.

Steve was diagnosed with lung adenocarcinoma a year before me, and he had been on Tagrisso about a year when we first talked. Later that spring we spent an evening with him, the only time I met him in person. Mostly we texted and talked on the phone, sometimes with Jason, twice with his wife, but mostly just the 2 of us. I had a million questions, most of which he couldn’t answer for me but he consistently offered what he had. He spoke so much hope and optimism into my situation, he always asked about Jason and the boys, and he always said that he and his wife were praying for me. I don’t know exactly how old he was, how long he was married, how many brothers he has (it’s 5 or 6, a lot!) what his friendships looked like, I don’t think I remember his face well enough that I could point him out in a lineup…so many things I know about good friends. But I had a friendship with him this past year that was so very helpful, stabilizing in a world of chaos, fear and uncertainties. Many people have been very stabilizing, but it was wonderful that he was so available to ask about scans and chemo side effects and effusions and drugs and the world I sometimes feel lonely and also submerged in. We shared treatments and trials we heard about. During our last phone conversation, we talked about heaven and what it must be like, what we will miss out on (but not miss!) when we are no longer on earth. It really was a treasure to follow him chronologically on this path, and I am so very thankful for the time I had to get to know him. I wish the time lasted longer. I wish I had that friendship back here on earth, but he is not wishing for the same! Here on earth, I am sad, but he has all the answers to the questions we asked over the months. I feel relief for him.

Post-chemo CT scan

I had another CT scan this week, met with the doctor yesterday afternoon to go over the results. A recent federal law allows patients’ test results to be available to patients at the same time they are available to doctors. In my cancer journey, on little things like blood work, it hasn’t been a big deal. For CT scans, it has been anxiety producing. Particularly my CT scan in December that showed cancer progressing, my scan was on Dec 1 but I didn’t meet with the doctor until Dec 14. So I knew for those weeks that something was off but had to wait so long to hear what the plan would be. Jason sat down with his radiation oncology doctors to discuss the scan results, but they couldn’t predict exactly what my oncologist would do for a new treatment plan. Needless to say, December was agonizing for me and our family. I say this a lot, but in some ways it’s really helpful to have a husband in cancer care and in some ways it makes the journey more difficult. So I decided with this scan to manage the waiting by waiting to let her tell us the results. I think it was a better experience for me!

Thankfully, this week’s scan was a good one! My lungs look clear other than the consistently-present, stable, original tumor that still measures about 14mm. My lungs showed no effusions present and no new spots on my lungs. My lymph nodes don’t appear swollen or remarkable at present. The bones still appear stable, compared to the recent, previous scans. A CT scan isn’t the best way to look at bones, but there isn’t a need to take a closer look at them with a PET scan for a couple reasons: it’s significantly more radiation, and insurance won’t cover a PET unless the doctor specifically requests one to clarify something questionable. It felt like I was looking over her shoulder, but I did ask if it’s possible for the cancer to be spreading in my bones but nowhere else and could she miss some progression by trusting this CT’s results. She said it’s possible but not likely. She asked me a lot of questions. She stated she’ll always consider how I’m feeling and doing at each appointment and combine that feedback with what CT results show. Taking all into consideration, she said she has enough info to conclude that the cancer is currently stable.

We also discussed the biopsy results. They showed a couple new genetic markers, sub-mutations to the one we have known about from the beginning (EGFR) although these mutations don’t currently qualify me for any clinical trials. Not exactly exciting news, but not the worst. Things change a lot in the cancer world so we are hoping that I qualify for something else when the time comes. She also said there are a lot of treatment options she can pivot to when this maintenance therapy (immunotherapy and the antibody drug) no longer keeps the cancer stable—including doing chemo again. That was disheartening for me. I thought I was done with chemo, but she said it’s a possibility to try again if I’m at least 6 months out from this previous cycle.

I asked her if I could start jogging again, and she said that I could if I felt like it. I stopped in December because the cancer progression made the radiation oncology doctors nervous about what might be happening in my hips and joints, they preferred that I do low-impact exercise from then until now. I really don’t like jogging, but it became my go-to exercise once I quit my gym membership with Covid. It’s easy-ish to do with kids in tow and fits my lifestyle. I haven’t even run around to play soccer with the boys, a bonding activity that’s easy and I’ve really missed. So my older sister, Kate and I went for a slow walk/jog this morning. The experience was very life-giving!!

Jason and I are leaving for a 4-day weekend trip tomorrow. It feels like good timing after a good-news scan. Also we are both really worn down from the past 5-6 months. It has been exhausting for me to experience chemo and then spend about a week each cycle catching up on all I didn’t do during the chemo fatigue. It has been exhausting for Jason to come home from a demanding job to then take care of so much around the house, filling in for me in so many ways. And then wake up and go back to a demanding job and do it all over again. One silver lining: some kind friends gave him an espresso machine for Christmas, so he has made us lattes every morning the past few months. He gets to create and learn a new skill, and we both get caffeine. It’s a win-win, although more days than not we drop some other ball (timeliness, lunches getting made/packed, showers, etc) as a result of getting yummy, beautiful coffee. I’ll take it, though! Thank you to our Bridge City guys! You’ve loved us so well.

Thank you so much for the support and love you have shown us in the past months! It has been so wonderful to have groceries and meals, gift cards so we can eat out or get takeout, new books to read with the boys, text messages and notes in the mail, etc. etc. It all reminds us how we are loved and supported by you, but most of all how much God loves us. He is taking care of us in the midst of this storm, often through your timely ways of reminding us of truths that are easy to overlook. As much as I wish to give up this cancer and all of its associated burdens, God has not forgotten me. I am convinced that the One who created the universe is a refuge and holds me/us up with His everlasting arms.

Chemo #6

I wanted to send a quick update before I get all drugged up Benadryl. Met with the Dr this morning, she said my blood counts look great, steady, in normal range, including iron. Not something I thought to worry about, I have felt pretty close to my old self the past few days. But I’m happy for the “you’re healthy” report and to stop the iron pills. I haven’t had an issue with them, but I’m glad they plus a lot of iron-rich foods have done what they should.

Because things look (including the biopsy site) and sound good, I’m doing chemo today. Chemo today was not a given until she heard my report on the last 3 weeks and saw my bloodwork from this morning. She checked for infection, but it seems the procedure went well without complications or side effects. I still have a 10 pound lifting restriction until Friday, but thanks to Jason and my sister, Kate, I have all the lifting-Graham-in-and-out-of-the-crib help I’ve needed.

Preliminary results of the biopsy are in. It still shows that I have lung adenocarcinoma, which the Dr said is a good thing that the type of cancer hasn’t shifted. I guess that can happen??? The specific molecular markers take more time to process and we don’t need the results at this time. But assuming there’s enough tissue to sample, the report to come will tell us exactly which clinical trials I might qualify for at the next point of decision. For the foreseeable future, I will continue with infusions every 3 weeks, with an infusion of immunotherapy and the antibody Jason previously wrote about (the blood supply network disruptor).

For a couple of reasons, I look forward to leaving this chemo path. Infusion day will be much shorter (instead of 6 hours of infusion, it will be 1 hour), which means I can plan for something else on infusion days. Also there are much fewer side effects with these two drugs, side effects I haven’t experienced so far. In general, as best the Dr can predict, I will feel much better with the chemo no longer in my system.

Last night, some friends from church came over to pray for me. I loved it! I ended up sitting with them outside, listening to the wisdom and truth and encouragement they shared. Many of you reach out, telling me that you are praying for me. Which I love to know about, but it was especially meaningful to hear their prayers last night!

New Lung Biopsy with Chemo End in Sight

Greetings friends and family.  Jason here.  I apologize for the long time between updates.  We’ve been keeping busy and each day has been full, and exhausting. 

Wanted to provide a brief update.  Lindsey has now completed five rounds of chemo, with the ideal goal being to have four rounds.  So treatment has already been successful in the sense of being able to get above what the doctor hoped to give.  The max she is allowed to have, due to cumulative toxicity, is six.  Linds will likely be able to receive her sixth and final round this coming Wednesday, April 14.  For that, we are thankful.  It has been a loooong journey and a hard one, especially for Lindsey.  But she has been a trooper, and I continue to marvel at her toughness and drive to fight through it.  Assuming her bloodwork is at acceptable levels, we see no other physical reason with symptoms or otherwise, to prevent her from getting the escalated chemo dose of a sixth cycle.  Please pray that she can have a sixth cycle and that she can tolerate and recover well physically from it. 

After chemo, Linds will be put on what’s called a maintenance therapy and will have that every three weeks for the foreseeable future.  Her maintenance therapy will consist of an immunotherapy drug and blood-supply-network disruptor, an antibody that affects blood vessel formation around tumor cells and networks. 

In light of Lindsey finishing chemo soon and the conversation we had with the medical oncologist in NYC at Memorial Sloan-Kettering, we decided to have another biopsy of Lindsey’s lung tumor.  When Lindsey was first diagnosed she had a tissue biopsy but, since then, we’ve only had blood biopsies.  (A blood biopsy looks at circulating DNA and markers in your blood and can indicate which genetic or molecular tumor markers are present in your body). 

As such, the hope for this procedure is that this biopsy might reveal a new genetic or molecular marker that could be targeted with a new therapy or clinical trial.  For us, it’s worth a shot to ask the question again of the genetic testing process to see if it could reveal something new, something that could be specifically targeted.  We’re doing this with the hope that we could ascertain some new information that could be useful in the future, beyond maintenance therapy.  We know chemo is effective but a person can only have so much so we hope and pray for a new mutation/marker to show itself and for a new drug or therapy that can treat it. 

Please join us in praying for this, for a new marker to target, or new therapy options. 

That being said, the most current update is that I type this as Lindsey is in recovery from having the lung biopsy.  She had a CT-guided lung biopsy this morning.  The physician is confident he got enough tissue to send for testing.  Accordingly, the procedure seems to have gone as well as expected.  Lindsey will continue to be x-rayed and monitored to make sure her lung doesn’t either fill with air or collapse.  But, we’re hopeful that the procedure has been successful and that sufficient tissue has been obtained for testing in the week(s) to come. 

So now, we wait.  And Lindsey recovers.  And Lindsey has more chemo Wednesday.

Again, I cannot thank you enough for your support, your gifts to us, your prayer.  It continues to overwhelm and humble us and please know we are grateful. 

To NYC for a Second Opinion

Greetings friends and family, Jason here providing an update on our trip up to New York (today) for a second opinion with a medical oncologist at Memorial Sloan-Kettering (MSK) Cancer Center.

For most of 2020, the decisions surrounding Lindsey’s cancer treatment were simple.  Her cancer had a driving mutation that clearly indicated Tagrisso, her targeted therapy drug, as the clear and overwhelming choice for treatment.  She could take a pill every day, treat her cancer, and not suffer the toxicities of more traditional, systemic chemo treatments.  She could keep her hair and get back to being “Lindsey The Administrator.”  But, in December of 2020, that all changed.

And with that change, we decided it was time to get connected to a large, research center where the newest trials and newest things are happening with Lindsey’s type of cancer to see what other options could be out there.  As mentioned in a December post, Lindsey had a liquid biopsy to analyze circulating tumor markers in her bloodstream.  Unfortunately, that biopsy didn’t reveal any new mutations, or any mutation that could be targetable with any current clinical trials or new therapies.  The biopsy revealed only the initial mutation as still apparent.  

With the full support of our oncologist in Greenville, we made contact with MSK in December and asked to be seen for the purpose of a second opinion, or to learn of clinical trials or novel therapies only available at the biggest research institutions.  But in December, because Lindsey’s biopsy hadn’t indicated anything new or targetable, we were asked to reach out to MSK when Lindsey neared the end of her current phase of treatment.  

So, today was the day for us to come to MSK to get their take on Lindsey’s journey.  We met with a medical oncologist whose sole area of oncology focus is Lindsey’s type of lung cancer, driven by her type of mutation.  This doctor and her team of colleagues focus primarily on how to treat lung cancer patients after they progress under treatment with Tagrisso.  She focuses on what causes the cancer to grow resistant, mutate again, etc. and is involved in trials and novel therapies to treat these resistant pathways.  We were grateful to be able to be seen by her in clinic today. 

The visit with her went well.  We felt like she really understood Lindsey’s story, really knew the significant moments of this journey, and was very engaged in evaluating Lindsey’s care plan.  Lindsey felt understood, listened to, cared for, and supported.  We discussed some possible options for future therapies but, the main summary of the visit was that she affirmed our current course of therapy as the one she’d pursue with Lindsey if Lindsey had been with her from the start.  She encouraged us to continue the current trajectory but said a value of being connected with her would likely be for future consideration and options.  I think Lindsey (and I) both feel a measure of relief for the time being knowing that we don’t have to make any sort of urgent decisions about next steps and also feel encouraged that the current course is a good course of treatment (although Lindsey is bummed to get more chemo again starting next week).

On a separate note, thanks to those of you who prayed for us and the logistics to get here.  We ended up in a bit of scramble trying to get here as we learned last night that Lindsey would need a rapid COVID test prior to being seen today.  So we tried to get on an earlier flight this morning, (even tried to get a flight out late last night).  In the end, our original itinerary worked out.  The flight arrived on time and we were able to get Lindsey to the clinic for the test almost 3 hours before her appointment.  Lindsey did have to go to her appointment alone (due to COVID restrictions), so we figured out a video phone call solution to allow me to participate.  And, truly, it worked out well and Lindsey did great navigating it all on her own.  That alone was a pretty big stressor for her/us last night and into today as we also learned that detail last night.  But, truly, today has worked out well.  

And, it was just fun for us to be in the city again.  We’ve technically been quarantined in our hotel tonight (having ordered dinner in) but enjoyed walking the city to and from her appointments today.  There’s nothing like NYC, in my opinion.  This has always been a happy place for us to visit, historically.  We’ve shared some memories here so it’s been fun to reminisce and be here together again.  

Until next time, thanks for the continued prayer and support.