New news…reality bites

Hey guys, this is Jamie (aka Aunt B, B, etc.).  I’ve been tasked with updating Jen’s blog again today.  Let me just start by saying you know the feeling you get when you have to follow someone completely awesome at something?  (Probably like how Brock Osweiler feels when he comes in for Peyton Manning during a Broncos game or like when Solange Knowles performs after Beyonce.)  Well, that’s me right now.  Jen is so amazing with words and following her feels a wee bit intimidating.   But here we go nonetheless.

Yesterday Jen started feeling nauseated, had a headache and started vomiting. Today, it started all over again and Aunt Liz and Gigi were quick to come to her aide.  This is typical behavior for Jen’s body after chemo, but she was unable to have chemo this week due to a low platelet count.  Because of that, she texted Dr. Osborne, who suggested she come in for an MRI to rule out anything going on in her brain.  I picked Jen up and we headed to the hospital around 9:45 to see nurse Christina who helped access her port.  We then made our way over to a different building to check in for MRI, where we were joined by Scott.  While Jen went back for her MRI, Scott and I walked over to join many of Jen’s close friends and mother who had already planned to meet at Baylor with the child life specialist that morning. (She will update you on that part later I’m sure – such a gift in so many ways).

Our instructions were to contact nurse Christina after the MRI to see if she had the results.  She had told us previously that she ordered the results to come back STAT.   Now listen, I’ve seen enough Grey’s Anatomy to know what that means.   However, that must only work on TV because this particular STAT allowed us enough time to eat a leisurely lunch with the group in the hospital cafe AND play a round of monopoly in the waiting room.  (Or maybe it just felt like that).  Christina even came out to the waiting room to let us know there was a glitch in the electronic transfer of the results.  She told us we could either stay there and wait it out, or go home and she would call Jen once she had the results.  Um…have you MET this crew?  We debated for a millisecond, planted firmly in our chairs, and decided to wait it out.

Eventually, Christina called for us, and the group (Scott, Jane, CC & Gigi) headed back to the exam room.  At that point, she let us know that the MRI show a ‘met’ (short for metastasis) in her brain.  The mood of the room suddenly changed and we all settled in to that place we don’t like to go.  I think it’s called reality.  Further explanation revealed that the ‘met’ was small (under a centimeter) and that there were also spots on her skull.  The skull spots weren’t too alarming because we already have the knowledge that cancer has spread to her bones. (And even though this was new information to us, it wasn’t as significant of a finding according to Christina.)  The ‘met’ in her brain, however, was a new character we didn’t want to introduce to this already sad story.  We don’t know, nor will we ever, if this ‘met’ is new or has been there awhile.  Up until this point, Jen’s brain hasn’t been scanned.  But what it confirms is that the cancer is spreading and will likely continue to surprise us in unexpected places.  Reality, does in fact, bite.

The next course of action will be for Jen to meet with a different doctor (who deals primarily with brains) on Wednesday to get scheduled for radio surgery.  From what I understand, this is radiation to eradicate the ‘met’, and will be an outpatient surgery.  It can last anywhere from 1-3 days total (meaning she may have to come several days in a row).  She will stay on the same chemo treatment for now, and will possibly have a scan sooner than anticipated to check the rest of her body (as of now, insurance only pays for a scan every 3 months and her last one was at the end of May).

As you might expect, Jen, in typical fashion, began seeing God’s goodness and provision immediately despite this setback.  She saw how the Lord allowed her to get sick, really sick, on the day her family & friends were already scheduled to meet at Baylor allowing some sweet fellowship while receiving difficult news.  She saw how he allowed her to get sick, really sick, despite the fact that she hadn’t even had chemo so her doctor’s wouldn’t dismiss it as just a side affect.  (Side note: they believe Jen may have a virus of some sort, but the nausea and vomiting are not necessarily related to the ‘met’).  She saw how he allowed connections with her friends & family to the child life specialist helping Linc and to the nurse coordinating the surgery.  In other words, she saw how He is in all of the details.  And she continues to acknowledge that at every turn.  It’s a beautiful thing to watch her share God’s sovereignty with every single person involved in this process without her even knowing that she’s doing it.  She loves the Lord and trusts Him with each step.  And even though that seems impossible given her circumstances, I’m here to tell you it’s consistent and it’s real.

In closing, I hope you understand that processing all of this, for me, requires some element of humor.  I would hate for you to mistake my somewhat cavalier prose above for lack of concern or understanding about the serious nature of what we are facing.  Jen and I are together a lot and can joke about even the most serious of things.  It’s how we do it.  It’s how we’ve always done it.  But I also really hope you understand that I love my friend with all of my heart and I wouldn’t wish this journey on anyone.  It’s been the most excruciating thing to watch someone I love being poked and prodded all of the time and land in countless exam rooms never knowing what she’s going to hear from the doctor.  But this is where we are.  And this is where she is.  And I rest assured knowing that our Lord and Savior has a master plan that will eventually bring glory to His name.

Jen just texted and asked that I share this verse in my post, which I found extremely appropriate to my aforementioned point about Jen. (Also, she likes to have the last word, so this proves THAT point. Thanks Beyonce.)

“We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure.  This makes it clear that our great power is from God, not from ourselves.  We are pressed on every side by troubles, but we are not crushed.  We are perplexed, but not driven to despair.  We are hunted down, but never abandoned by God.  We get knocked down, but we are not destroyed.  Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.”  I Corinthians 4:7-10

Thank you for your continued prayers and support.

Much love,

B

Twists and turns…

As soon as you think you understand the program, you realize you don’t. With the change to every other week I presumed that my blood levels would bounce back and we would have chemotherapy as scheduled. Thought wrong. Today, my high school friends and I were joined by a dear friend and old neighbor named Julie Bell – she and I discussed that cancer regularly  bursts the bubble of the “allusion of control.” That is true again today. I took labs and felt fine and waited for results in the chemo waiting room…

Standard protocol is that you get labs done and they wait for results and once the doctor clears you for chemo they mix your drugs. So it’s usually an hour or so wait between labs and chemo. It’s never good when the nurse comes to talk to you instead of just calling you back. When we heard my name called I jumped up to go in and I am pretty sure the girls and I let out an audible sigh when the nurse walked towards us instead of waiting for me to come back.
She ‘gave me the good news first’ that I would proceed with a bone strengthening infusion (once a month since bones weakened by cancer) BUT I wouldn’t have chemotherapy because my platelets were too low. Since me and my friends now think we are doctors, Jamie replied with … ‘So can she have a shot?’ but no-go because today it was my platelets that were too low (need to be 100 but were 46) and there is nothing they can do to elevate platelets. 

And, I am kind of reading between the lines since I didn’t see my doctor today, but since she was pushing it to give me chemo two weeks ago when my platelets were at 92, I am presuming that it wasn’t worth rescheduling because it is unlikely they would rise 60 points in the near future. So, we will try again on my next scheduled chemo date – June 13th. And I got hints today that she is considering modifying my regimen because it seems that the side effects are a high risk. She may just lower one of the drugs or maybe try something else? They also mentioned waiting until my next scan (end of August) before changing the course of action. So, yet again, a holding pattern until the 13th. When I sent the chemo news to Scott today he replied with ‘this can’t be ideal.’ And I think that sums it up – in a much more concise way than I just did!

While all this was happening on the 3rd floor, Lincoln was with his Aunt CC who took him to meet with the child life specialist again – he jumped right in to playing with her which is really sweet. She’s a friend from Bible study years ago and a blessing that she is now paid (and free to us) to help families through hard seasons like ours.  And that she knows Jesus!

After he finished with Emily, he came up to wait on Mama to finish chemo – and had a little lovins with his Aunt B.  And ‘Nothing’ (as he named his lovey/dog).This Friday, he will meet again with the child life specialist – and a few of his friends. We are realizing that he’s not the only one that has questions and it’s sometimes hard for moms to know how to handle the little one with their questions about ‘Lulu’ (carryover from Lewis…). Emily is going to meet with my friends and our littles to help us all process and communicate effectively. There are so many days when I think this is entirely lost on Lincoln. And then there are other days, like today, when I realize he knows more than I give him credit for. As he got on the elevator to come up and wait for me, Aunt CC said he greeted another woman by saying “my mom has cancer…”  She replied with, “… Well that makes two of us.” His little quips crack me up. Love him. And so thankful for the tender spot he has in many of your hearts that prompt prayers for his security and well being. We are grateful.

Love…

Good News. Bad Mom.

Since you read this blog to share in our cancer journey (rather than my parenting!) I will start in order of priority for you. Even though, thankfully, I am much more attune to the latter than the former. 

Cancer is now our normal and as my chemo schedule changes to every other week I am finding a rhythm that makes this normal more manageable. My body is able to recover between infusions and my platelets, white bloods cells and neutrophils are able to bounce back without the shots that have us playing the schedule guessing game related to when we will have chemo (or not). So I am thankful for this new schedule and more predictable blood work. And, in today’s pre-chemo blood work, Dr. Osborne was excited to report that my tumor markers in the liver are stable or declining. And, my completely inflated and off-balance boob is back to ‘normal’ … This is all super encouraging news that the chemo is working! It’s taking a hit on some other things (potassium, iron, magnesium and today my blood pressure was 165/40😁) so we are managing side effects while thankful for medicine and doctors that the Lord uses to sustain my life as long as He ordains.
And in an effort to prepare my heart for the expected likely abrupt end (prognosis is average of 26 months from stage 4 diagnosis – December 2014 for us) of my earthly life, I have been studying Heaven with a few dozen women this summer. If you are in Dallas and want to join me, come on! It’s super fun and encouraging for this life and the next! My friend Kay and I alternate leading and we meet for 7 weeks at Northwest Bible from 930-11 on Tu. you are all welcome – unless you’re a man:) Can email my friend Eraina at neighborhoodstudies@gmail.com for the book info and electronic copy of the study guide. 

And, on the family front, some girlfriends and I took our kiddos to my friend Lezleys’ parent’s lake house last week. Linc loves having his friends and swimming all day and snacking on Cheetos puffs (see below) and I like my friends and being at the pool all day too (minus the puffs!) so it’s a win win.

However, some times I get really mean and demand that he eat protein or can’t have candy for breakfast or help clean up. And his response to one of these was a very loud announcement that ‘you are not even the best mom in the whole world…’ Really?! I think I know that but thanks for reminding me with your grateful heart. And if that wasn’t insulting enough for a 4 year old he followed that by saying, ‘even though you think you are!’ What?!?! Look, little man and ‘threenager’ (who needs to get the memo that he’s 4 since I’ve heard it’s better and need him to play along!), I may be foolishly arrogant about some things but it ain’t my parenting. I replied with all the sincerity I have to say ‘you’re right, I am not the best mom in the whole wide world.’ And tried not to die laughing. 
So, little man, when and if you ever read this, I hope it makes you laugh too. And I hope you have learned to accept the Lords sovereignty to give you ‘not even the best mom in the whole world.’ But for my many failings I can assure you that I love you and adore you and delight in you. Even when it’s not always mutual.

And while I wrap up in the chemo chair, he is with his Aunt CC and a friend Amanda who asked me if she could take him to ‘Build a Bear’ and make a bear with recordings of messages from me embedded in his little friend. How precious is that? And this …?  

It’s good to be loved. At 4 and at 43! Thanks for loving our family, friends.

On your 4th birthday…

Little man, you are such a gift. You are personable, friendly, animated, love to fish, love all animals, spirited, opinionated, make us laugh, and ask a million questions. And even when you are also strong-willed, independence-seeking, goofy, impatient, and living through a hard season, you are still a gift. 

Tonight, when we arrived home in seperate cars you greeted me at the car by saying ‘I want to tell you a secret’ and your cute little bossy self (wonder where you got that?) wanted me on the sidewalk where you could whisper so close to my ear that I couldn’t understand a word of it. Upon repeat, you let me know that ‘Daddy said I will be four tonight’! Since I was thinking it was your ‘birthday eve’ this was lost on me until you explained that while you were asleep you would be 4 (and later told Gigi that you would be 6 … Not sure how that math works!). Yes you will, young man, yes you will. And you were so cute and so proud of yourself. We are too. We are proud to be your parents and honored to celebrate your big day.

So, as your Mama awakes in one of her sleepless nights it occurs to me that you are now 4! Neither you or your daddy are awake to enjoy it but I think the Lord awoke me to pray. And, as I began to pray for you He prompted me to write. [Short intermission for a throw up break but your little stool came in handy while I sat by the potty.] 

I plan to do a video or two for you but find myself so awkward behind the camera that writing just seems easier. I committed to your dad that I would do a video by your birthday but I haven’t. Son, I will. Lord willing. And, Kurt, you can ask me about it again:)

On your 4th birthday, and for as many birthdays as I celebrate with you, I desperately want you to know a few things. Some of these are things I’ve learned the easy way and some the hard way – but all by my Saviors grace. And these would be the greatest gifts I could ever give you (which is a good thing since I realized tonight that your dad and I are giving you a party but don’t actually have a ‘gift’ for you…)…

– an understanding of how high and wide and how deep is the love of Christ for you. I pray that you will be overcome by His love for you … A love that does not need to be repaid or returned even if you could … A love that changes everything.

– out of that love I pray that you would know the great joy and fullness of life that comes from loving others. Living for yourself and your own plans and purposes will be a shallow and boring and less fulfilling life than a life where your eyes and hands and heart are oriented toward others.

– a love for His Word. It has been the greatest friend, teacher, counselor, comforter, guide, and gift to help me grow in a love for God and His people. I pray you will read it, study it, know it, memorize it and depend on it. As Moses said, these are not idle words, they are your life.

– and oh how I pray for you the gift of rich, honest, deep, raw, vulnerable friendships. This has been one of the areas that the Lord has been most exceedingly gracious with me … From April at La Petite Academy through junior high, high school, college, Chicago, single Dallas days, and my married life, my friends have made all the difference. I pray that the way you love your friends now (you ask me almost everyday if you can play with friends and you are under the allusion that your party is ‘friends only’ with ‘no badults’ as you told your DeDe on the phone today … No such luck) will continue the rest of your days. And, my son, the best way to have a friend is to be a friend – so this is my hope and prayer for you. May you be a faithful friend that enjoys the gift of faithful friends.

That’s 4 big prayers for my big 4 year old. And my hope is that I will be here to add to it for your 5th birthday. But whether I am here for your 5th or 15th or 50th, these, my son, would be my hearts desire for you. And if I am not here I pray that you will have a desire to read back over your Mamas words and hear her heart. And that you will take them to heart. And that you will know that I love you with all of my heart. Forever and always.

PS After writing and as I attempted to post this with a few failed attempts, I heard the precious sound of your fast footsteps coming down the hall. At 4:40 (ironic huh?), you came to my side of the bed and when I said ‘guess who is 4…’ You answered with the cutest little ‘me’ before you climbed right up in between us. Once upon a time I would have been so foolish and arrogant to think, summarily, ‘people shouldn’t let kids sleep in their beds’. But one of the gifts of cancer is to be reminded of relationship over rules for our family – because I just don’t know how many nights I may have with you. And I love that both of your little feet are touching my leg while you are curled up facing your daddy. You are loved, 4 year old little man, you are loved.