One day at a time, sweet Jesus

Well as much as I wish Jen felt up to writing this post, our friend still needs just a little more time.  So many of you have asked about the patient and her progress, so we thought it might be good to let everyone know she is still in the hospital.  She truly does appreciate all of the kind words of encouragement through the blog comments, Facebook, and texts, so please keep those coming.  I think the best way to describe this hospital stay is Jen is literally taking it one day at a time (the ‘sweet Jesus’ kind not the Valerie Bertinelli & MacKenzie Phillips kind).

Speaking of sweet Jesus… Jen did tell me that all of the quiet time she’s had at the hospital has actually been a huge blessing as she’s able to spend a lot of time with the Lord.  I thought this was especially poignant because if you know Jen well, you rarely see her without an entourage of friends or other people around.  There was something really pure in the picture she painted of this precious time, and it was a good reminder to SLOW DOWN and declutter our time if you will.  How a bald gal hooked up to countless IV’s while eating hospital food continues to inspire is beyond me.  Oh how I love my friend.

Jen’s pain has lessened a bit and she is starting to slowly wean off the heavy stuff.  She still doesn’t have a discharge date, but it seems they are at least moving in that direction.  In the meantime, she is scheduled to start a new chemo this week, which feels like progress.  There are lots of other items she will update you on when she takes the writing reigns back (like MRI results, no hot water in the shower, velcro tank tops & more Linc visits), but we are both weary and this is all I’ve got tonight.

And because apparently you don’t feel like taking a lot of pics when you are in pain, I am reduced to using my own bitmoji to sign off…

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Much love to all,

Jamie (aka B)

 

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Easter Update

Greetings to all.   It’s Jamie again.  Thank you so very much for the outpouring of love and support through text and comments on the blog.   Jen is very touched and is trying to read them all when moments of relief surface.  Several of you have requested an update on our friend, so hopefully I can provide some up to date information before Easter celebrations begin tomorrow.

Jen remains in the hospital and will most likely be there through early next week or until they can get her pain under control.  As you can imagine, she is saddened by the fact that she will be spending Easter on an adjustable bed.  She is excited, however, to watch Watermark’s Easter service via live stream tomorrow morning at 9am along with the congregation.

And even though our extroverted friend has been without vistors, she did make one little exception today.

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Little Linc made an appearance to visit his mama and seemed to be at ease in hospital.  He also seemed to understand that the ‘doctor may need mama to stay longer to feel better and figure out what is wrong with her tummy.’  When Jen mentioned that was something they could pray for, Lincoln said, ‘we could pray now’.  And before Jen could look at Scott to pray with them, Linc was praying.  As far as I’m concerned Jen and Scott can just put a big ole’ check mark in the parenting category.

IMG_9078.JPGWell done.

After the prayer, Lincoln got really excited about sharing Jen’s plate of hospital food with her.  Hospital food.  {This might completely negate the parenting check mark above, but in this instance I think we might give them a pass.}  Knowing how particular Jen and Scott are about their culinary experiences, I giggled about their offspring being okay with the questionable mashed potatoes from Baylor.  (It’s such great ammunition for the next time we road trip together and they turn their noses at me for suggesting Subway.)  But hey, whatever works.  Lincoln even told Scott on his way to the hospital, ‘please tell mama to save her lunch to share with me.’  Um, Linc, I think that’s a safe bet.

IMG_9077.JPGHere are Jen & Linc rating their food items.  And I don’t know about you, but one look at Jen’s face tells me she might be lying.  Her thumb is also not 100% committed.

Some items that might really deserve a thumbs up, however:

  1. Jen had an MRI of her hip and pelvis that was originally scheduled for next week but went ahead and knocked it out while she was there.  I love that she’s somehow found a way to be efficient and productive while being hospitalized. #stillourjen
  2. Jen had a great conversation with the oncologist making rounds today.  He was a believer as well as a student at DTS at one time, so she enjoyed her time visiting about things not related to cancer. #myguessistheytalkedaboutjesus
  3. Even thought it’s far from her marathon days, she did ‘suit up’ with her water bottle on her pain pump for a stroll around the floor.  She even brought it strong with ear buds (someone get this girl some BEATS, will ya?) and worshipped as she made her own rounds.  She said that it was sweet of the Lord to meet her there on the quiet floor on Easter weekend.  Cue the tears please.

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Most of Jen’s time is spent between managing pain and napping.  She and Scott have been holding down the fort for now with brief cameos from Lincoln and Jane.  But I know she appreciates each one of your prayers.

The Clouse’s wish you all a beautiful celebration of our risen Savior tomorrow.  Or as Jen puts it…

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Much love,

Jamie

Prayers, please

Hi everyone.  It’s Jamie.  Jen asked me to write and ask for your prayers.  She was admitted into the hospital yesterday with severe pain and vomiting.   How she went from shopping at Anthropologie with Mel & Gulley in Houston on Wednesday to the ER on Thursday baffles me.   This is the cruelty of cancer that I have come to abhor.  One day she is feeling well and the next she is a victim of such horrible pain.  There seems to be no rhyme or reason.  No pattern.  It’s maddening.  And to witness someone you love in pain is something none of us should have to endure.  Even when wearing a cute new outfit from Anthro.

I will recap the highlights of the day yesterday in an effort to provide details, but also so you know specifically how to pray for our Jen.

  1. Jen is taking pain meds to manage her pain, and now has a pain pump in place to help give her some control over managing of the hard stuff.
  2. Once the meds are administered, it takes about :10 for relief.  She never gets to a great place, but as she puts it a ‘very manageable’ place.
  3. She had a CT scan yesterday to try to determine the cause and it didn’t show any evidence that would explain the reason for this sudden pain.
  4. Dr. Osborne had an oncology surgeon come by to examine Jen to make sure she wasn’t missing anything.   And nope, she wasn’t.  Oh how we love our Dr. O for continuing to knock (beat) down every door in order to help Jen find relief.
  5. No word yet on when Jen will be released.  My suspicion is that they will try to determine why she is in pain and at the very least keep her there until her pain is manageable.  (But I’m only a photographer so don’t write that one down in a sharpie.)

You’d think being admitted to the ER would fill the daily quota of Clouse excitement, but no.  As if Jen & Scott’s day wasn’t hard enough, their car was stolen from the hospital when they were checking in yesterday.  Thanks to ‘find my iPhone’ (Jen’s phone was still in car), the police were able to recover the vehicle and only cash was missing.  Seriously?

And lastly, Jen’s sweet grandmother was ALSO admitted to the hospital (a different hospital) yesterday for shortness of breath.  Our good friend Hite took care of Vonie all day, and it turns out she had a mild heart attack.  Again I’m plagued with the question of how Hite went from modeling bar stools at Wisteria one day to sitting in the ER ALL DAY LONG with a 97 year old.  Is anyone seeing the uncanny similarity here?  Anthro/Wisteria?  All I’m going to say is maybe Hite and Jen should stop spending their free time in retail establishments.  Is a new crochet top or an acrylic stool worth it? (Don’t answer that).   The good news is Grandma Vonie is better today after hydration, but we would covet your prayers for her as well.

I can’t make this stuff up.  Someone call Warner Bros.

On a more serious note, thank you to all who have committed to praying for Jennifer, Scott & Lincoln.  This journey is not for the faint of heart or fair weathered friend.  This is a marathon.  This is an every day grind.  I know they appreciate the steadfastness of each of your friendships and every one of your prayers.

Along those same lines, Jen is struggling to even respond to the texts she received yesterday.  Which, if you know Jen, is noteworthy.  She seems to be ‘hanging on’ between pain pills, so it wouldn’t be fun for her (or you) to visit.  I know she reads each and every comment on the blog, so if you want to include a comment here please know they don’t go unnoticed.  And mainly I know she is DESPERATE for your prayers, so keep those coming.  The best way to love her right now is to do just that.

We serve a BIG and mighty God, and He is evident in every twist and turn of this cancer story.  The Clouse’s faith is as strong as ever and they continue to praise His name even in the midst of pain.  MercyMe sings a beautiful song called, ‘Bring on the Rain’.  I will leave with the lyrics of that chorus and it reminds me of how beautifully Jen is handling this immense struggle.

“Bring me joy, bring me peace, Bring the chance to be free
Bring me anything that brings You glory
And I know there’ll be days
When this life brings me pain
But if that’s what it takes to praise You
Jesus, bring the rain”

Much love to you all,

Jamie

It’s getting heady in here…

Wow. I feel like there was some serious brain power at work on our behalf today. We met with the MR. Dr. Osborne in Houston and had our friend the research doctor Trey (devoted his studies/work to the study of breast cancer genetics) and even dialed in to include the MS. Dr. Osborne in Dallas. For some reason these A&M and Texas Tech brains weren’t feeling so brainiac. And we know from your blog comments and posts that there were some serious prayers on our behalf too. Thank you.

They talked gene all about gene mutations and multiple lines of treatment therapy and how/why some drugs would block pathways or cross the blood/brain barrier or trends using drugs for ovarian cancer like Scott and I would talk about Mi Cocina or Mias (and our tenure in HP has converted me wholeheartedly to Mias!). They be smart.

And, then again, when these super smart people say things like (literally because I wrote it down…) ‘something is clearly going on with you [referring to a gene mutation] because you’re 44 and have had 2, if not 3 cancers [original breast cancer of February 2012 plus the inflammatory breast cancer in Feburary of 2015 and now the triple negative of 2016] – that’s not supposed to happen.” And also explains why Scott says, at most turns, ‘it just seems like if we could get good news or bad news we always get the weird bad news…’

And what’s weird about ‘the bad news’ of gene mutations is that it can also be ‘good news’ for directing the course of treatment. And doctors know that there are many gene mutations behind cancers and it’s the challenge of identifying them and treating them that drives much of the research – and takes far more brain cells than I had even before the zappings!

Needless to say, MR. Dr. Osborne wants more genetic testing to see if the same mutations noted in my primary tumor are present in the new tumor. In some ways, this could be good news. [On the other hand, there’s a 50% chance those mutations would be passed on to Lincoln as well and they are likely inherited from my dad who had colon cancer in his mid-40s.] But, as I asked MR. Dr. Osborne if he would advise praying for the mutation he said ‘it could be helpful and medicine could advance significantly for your family’s sake.’ 

It’s challenging now to decide how to treat 2 different kinds of cancer in my body – the one we have been treating has more options for treatment and is significantly advanced in its metastisis. Yet, while the new tumor is in fact ‘new’ and not yet (that we know of) causing major havoc in my body, it will also become a problem and is a more aggressive and harder to treat type of breast cancer. It is called ‘triple negative’ because it tests ‘negative’ for the 3 common bio markets (hence, ‘triple negative’) that are used to decide the most effective treatment plan. We also discussed the possibility that we don’t necessarily know which tumor is the source of all the other metastasis. Right now it can be assumed to be the more ‘mature’ tumor on the right side but we discussed wishing it was wise:easy to take a lot of biopsies and see – unfortunately that’s painful and could be counterproductive because you don’t really want to make ‘Swiss cheese’ out of my liver as our Dr. O once said and she doesn’t want to do lots of poking and prodding because same stimulus for internal healing and cell regeneration can also foster cancer cell growth. It’s hard not to deep dive into some of these cancer topics to try to explain where we are. Did I lose you?! Back to today…

We will do more genetic testing and also start another chemo regimen pretty soon. They don’t have any trials that fit my protocol (at this point that’s going to be unlikely because this isn’t, thankfully for others, a common scenario and there are too many variables for good trial data collection) so it was just really helpful to facilitate the brainstorming of these 3 really smart doctors talking about pros/cons of different drugs or combinations of drugs. And since our history has been that, for one reason or another (maybe because there have been 2-3 types of cancer growing in my body?), we haven’t stayed on one treatment very long, it is nice to have a few options teed up.

In other news, I had some progressive hip pain last week to the point of not being able to be fully weight bearing by Friday so I’m having an MRI of my pelvis and hip tomorrow. Scott realized, in our conversations about it, that in missing my chemo regimen I had also missed my monthly infusion of a bone strengthener so we did that on Friday. And I don’t know if it’s that or a ‘kink’ (highly technical term) that worked itself out but it’s been feeling better. The nurse practitioner in radiation reminded us that there is evidence of bone metastisis in the femur and hip so maybe that’s the source and they can use radiation to help with pain management if it persists.

And the best parts of Houston were, as always, the people and support that rally around us. My dear friend/old Arthur Andersen coworker/running mate for NYC marathon in 1997, Alex, started a motor coach service called Vonlane so we traveled in style )with great pride in my friend!) all the way to Houston.  

Then what’s not to love about being met in Houston by the dearest of friends from San Antonio and getting to spend a precious less-than-24-hours together staying at their parents house and cramming in 2 meals, Starbucks, a very successful shopping trip at Anthro (Scott marveled at how long we could shop and we marveled that he could be so happy doing nothing on the couch while he waited) and their sweet presence with us  at the doctor?! Cancer helps you focus on what matters -and being with my people matters a lot. 

 It also matters a lot to us that people pray and care and keep Lincoln and stuff Easter eggs for the party I missed today and give us linens and things we need for the new house and organize my medicines and drop off sweet goodies for the road trip. One of the funnest lessons of this wild ride is seeing all the different ways God has wired and gifted people that love us (let’s be honest … we can’t all be genetics experts from ivy league schools or own a motor coach company but the Lord provided those through someone else and just wants us to bring our piece of the puzzle …) and how all those different gifts add up to a whole lot of known and unknown needs being met and served. And our family feeling very loved, cared for, and prayed for.

So, as much as my head may have wanted to cramp and explode during the morning meeting, it’s my heart that regularly wants to cramp and explode as we experience the love and gifts of so many. Thank you for being that love and giving your gifts.

Head stuff. Hard stuff.

It’s been an unexpectedly hard couple of days between my head and then Lincoln’s head. I’ll start with mine and continue in chronological order from Friday. 

I’ve done the stereotactic radiosurgery (SRS) before (last July) so wasn’t anxious and thought I knew what to expect. I would wear a super tight mask that holds my head to the table and would lay there for an hour and a half or so while they lasered (lazered?) each identified lesion from multiple calculated angles. Compared to the one spot last summer, I expected it to take about four times as long as the last procedure but envisioned  myself having a good nap. Not so much… 

They went to put the mask on and I immediately felt like something was terribly wrong – and that was before they began clicking it down and tightening it into place. It’s so tight that you can’t even speak so I flagged them that something was wrong and realized, at least initially, the tech had casually laid it on my face incorrectly so we were off to a rough start. The chin part was over my mouth so I couldn’t breathe. He wasn’t laying it there for permanence but just getting started and yet I think maybe that  got me ‘off’ mentally? So, then, when they went to actually lay it on my head and it was touching me everywhere to the point of feeling like there was no way I could breathe (or talk or swallow…) I had to call them off again – with frantic hand signals since it’s too tight to talk.  And, again, this was all before they started clicking it into place at four different locations which made it tighter every time. I’ve never seen this side of myself but I was flagging them down and asking them to remove it and telling them I was absolutely sure that something was terribly wrong with the mask design. I also think that while I lay there with my eyes closed they were whispering over me and that maybe they didn’t disagree that the mask was exceptionally tight? I asked them about alternatives to fix the mask and learned, unfortunately, that would require starting all over – back to another MRI in case anything had changed, making another mask, rescheduling the procedure, and all the while I know I can’t have chemotherapy while we are doing this so there are many reasons I wasn’t too excited about this idea. 

At this point, I’m sitting up on the table, they’ve called in their supervisor and they are asking if I have ever taken Xanax. I’ve never had it before but I am open to anything to make this better! Honestly, the thought of anything making it bearable is beyond my comprehension at this point but I am willing to try. I sent Scott a frantic text and told him I was having my first panic attack and he quickly went to the pharmacy onsite to get the Xanax and came back and sat with me. At this point, I am crying hysterically – sitting alone (by choice) in the little waiting room while I wait for Scott to return with some medicine. It was a very odd experience. I’ve never experienced claustrophobia or a panic attack or suffocation and all of a sudden I had experienced all 3 laying on a metal table surrounded by strangers. Scott brought me the medicine waited with me for another 30 minutes but I didn’t feel anything even close to loopy or out of my head. However, the waiting/anticipation wasn’t fun so I was ready to try again and thankfully, with much prayer for many in the waiting room, and a side of Xanax, Scott staying with me until I was ‘buckled down’ and constant ‘Jesus help me’ prayers, I survived an hour of the mask. When they took it off it had left painful indentions on my chin and the back of my head😁 But, it was over! And I am thankful. Mission accomplished. Prayers answered. Grace abounds. And now I have a new empathy for folks with claustrophobia and panic attacks. Oh. My.

I was wiped out the rest of the day so very content in my ‘happy place’ on this wonderful big white sectional leather couch in the Fronterhouse’s backhouse (as we near completion on our house and plan to leave our happy ‘home away from home’ this couch will be remembered very fondly as a good friend to me for many hard days and hard sleeps!) for the rest of the night. I awoke very briefly to enjoy Louie’s pizza, Caesar salad and mashed potatoes (if that sounds like an odd combination that’s only because you’ve never had their masked potatos) with Scott and Gigi before crashing again while they binge-watched recent episodes of the final season of American Idol.  I 💗 La’Porsha!  There’s something really sweet and comforting about having your people all piled with you on the happy couch even while you’re sleeping.

I slept great that night and was actually like a little kid before Christmas morning because I of a long awaited reveal of an incredible gift from my running buddies.  When we were we diagnosed as stage for December 2014, all of my running buddies that I’ve loved and known and run countless miles with (including 3 marathons for me and many more than that for most of them) since the mid 90s came over for breakfast one day and told us they wanted to send us on a trip of our choosing.  The gift was so generous and it was so difficult for Scott and I to even consider receiving the generous gift (much less choosing where we would go!) so Scott had the great idea of letting them choose. We knew the trip was 4.8-4.25 but didn’t know where and were finding out where we were going on Saturday morning. Can you see why this would be like Christmas morning o’ greatness?! And it was! We are going to Turks and Caicos and I. Can’t. Wait. My dear friend, Alyson, had organized all the details in adorable binder so Scott and I looked through that while Linc gorged on Apple fritters (I may have helped as well…) and started playing paper airplanes with two of my running buddies. The details are foggy between paper airplanes and the floor but all I know is there was a crash and a bang and blood. He fell backwards out of a chair onto his back but then whiplashed his neck pretty good so his head bounced off the floor. There was a PrimaCare just across the street so it was an easy decision to walk over and have a professional look at his head and assess the situation . Maybe that decision wouldn’t have been so easy if I had known it involved multiple lidocaine shots in his head and eight staples and him screaming repeatedly and violently “no more staples!” while the doctor asked that Scott, his Aunt CC, and I restrain him. Brutal. Too bad I didn’t remember I had 2-3 leftover Xanax in my purse! Ouch. Thankfully, a little play date with his buddy Andrew was already on the books and he was more than willing to ditch his parents and PrimaCare to be with his little people. Whether you’re 4 or 44 and whether it’s brain zapping or a bloody bang to back of the head, we all need our people (and our lovey in Lincoln’s case). Thanks for being our people.  

And skip this section if you don’t like blood but here are pictures of ‘the wound’ as Lincoln calls it.   

   
And of course the upside for the ‘rents is extra cuddles…   

   

Waiting. Zapping. Going.

Quick updates here.

We are waiting on chemo this week until we get more pathology back from the new tumor on left side. As if it isn’t crazy enough that I have another type of cancer even that cancer is being challenging. After multiple tests on my tissue one was non conclusive and now being sent to Mayo to break the tie and those results take 10-14 days – guessing we will know late this week or early next week. That information will help determine the course of treatment. With that information outstanding, we are holding on this week’s chemo (fine by me!😉) and will re evaluate after the results are in.

I am also waiting for an appointment at Mary Crowley Cancer Research. I admittedly felt pretty important last week when the Chairman of the Board was ‘expecting my call’ and, thanks to my new friend Sue, holding my hand through the admissions process. With my Dr. Osborne’s full support, it will be interesting to hear if they have any trials or research that fits my profile. I’ll keep you posted.

And then on Friday we will start the zapping. There are 5 identified lesions in my brain and each of those will be targeted with laser radiology for :15-20ea. So I am scheduled to be ‘on the table’ at 10:10 and should be done by noon. Having done this before (last July) I am not nervous but certainly don’t take lightly the serious nature of anything involving my brain so would love prayers for the physicsists in the basement cranking out the numbers and the neurosurgeon (Dr. Barnett) and radiologist (Dr. Cheek) who have determined/defined the treatment plan.

And, last tidbit, we are going back to Houston next week for another consult with the other Dr. Osborne (what are the odds?! And his sister is even named Cindy like my doctor …) who is well-established as ‘the man’ when it comes to breast cancer. I’ve mentioned this before but both with my Dr. Osborne and when I was at MDA everyone was impressed that I was able to get his input on our situation. I am thankful as well. His staff is so sweet to me and when I emailed requesting an appointment Dr. Osborne himself responded to my email within minutes saying he would happily see me again. Our appointment is next Wednesday, 3.23. We continue to feel like, through friends and the Lord, we have access to such an incredible pool of talented physicians and compassionate ministers of mercy and help. 

And, ultimately, from details like these to friends and family who love us and our Lincoln, we see tone and time again the compassion, ministry and help of our God. He is with us in the waiting, zapping and going. And we trust Him. Or, as Lincoln would say, we are ‘two thumbs up’…

 
He kept jumping off this wall at church on Sunday. He face showed both sheer terror and sheer delight. I relate. So much of this ride can have moments of sheer terror (especially if I focus on my final days or minutes or fear being miserably sick …) but, lately, more of my days are good than bad and that fosters incredible delight and gratitude. 

  
Thanks for joining with us in prayer as we wait, zap and go…

Yet another negative. Make that a triple.

Well friends. Never a dull moment. The pathology for biopsy results of left breast is in … And never saw this one coming … Triple negative. So I have an entirely separate primary cancer – how exactly does one get cancer twice?! Triple negative is the least ‘desirable’ (as if any are ‘desirable’…) and most aggressive. Clearly mine (right side) is already very aggressive but, by definition, ‘triple negative’ means that it is ‘negative’ for the 3 attributes they test. And they use those attributes (for each that are ‘positive’ like I am ‘hormone positive’…) to decide the course of action. Therefore triple negative confounds doctors bc they don’t know how to defend against it. We are in shock. This never even crossed our mind as a possibility.

I didn’t sleep well last night and Lord prompted maybe I should consider going back to Houston for his opinion on next steps – and that was BEFORE we got this curveball. And in fact that’s what I was texting w Dr O about when she mentioned there will be limitations of trials available since I have both kinds of breast cancer (hormone positive and, now, triple negative). I had reached out to Christina but never heard back yesterday. And now I think I know why. 

Sweet to get a ‘hug’ from the Lord through my friend Suzanne who, having no idea about our early morning news, sent this verse.

Amen and amen. Or, in my case, ‘The news may be bad and the new cancer may be even meaner but even then my faithful love for you will remain. The covenant of blessing will never be broken,’ says the Lord who has mercy on you…

Indeed, sweet mercy. New every morning. Great is His faithfulness.

He’s got my whole brain in His hands…

This is overdue because it’s overwhelming. But because I can’t imagine any more days worth of information or drama to consolidate and because we want you in on the details with us, I write. I write from a cozy bed at a friend of Jamies’ farm in Athens (big hugs and thanks, Jenny to the G!) trying not to wake the snuggle bug between me and Scott and secretly (unlike Scotts affinity for a king-sized bed) loving all 3 of us crammed and cozy in a full-sized bed.  It’s getting super late and this seems a tad ridiculous at this hour but if I don’t write soon I may surrender and never come back.  Given this scenario, this post warrants a warning about lots of content (written by thumbs with limited light and late at night) that could leave you lacking or confused.  And, because it’s so long and you too may surrender and never come back, I thought this ‘novel’ could use a summary of its contents:

– Terrible Cold Turkey Tuesday

– Results of Brain MRI and Biopsy

– Grandma Vonie

– Few Farm Photos

Isn’t much of life a bit of a roller coaster? We rode the incredibly sweet high of Gods provisions for us last weekend with the easiest round of chemo that I’ve had in months and a direct answer to many prayers. I was in awe of my energy last Saturday. Simply being up before 8a is an impressive feat for me these days so arriving showered and dressed by 8:30 and talking until noon is downright monumental. As referenced in the last post, Heaven 101 was pretty much heavenly … Enjoying the presence of God among the people of God as we celebrated the hope of God.

And then there was Tuesday. I can’t even remember Monday because Tuesday pretty much overshadows the week.
I was scheduled for a biopsy on Tu morning and then an appointment with our oncological radiologist (Dr. Cheek) later the same day. I woke up feeling tired and told Scott I was ‘ok but not great.’ I had planned to lead our Bible study conversation but decided, as a friend drove me, that my ‘ok not great’ was trending the wrong direction and I punted to my friend/co-leader within 2 steps inside the door. And instead of enjoying the lesson I watched part of it through the window as I threw up in the garden outside and then I listened with my head on the table until it was time for an early exit to the biopsy. Jenn drove me and I texted Scott on the way saying ‘feel sooo bad.’ I waited horizontally in the lobby and then the real fun continued when I got back to the biopsy room and my mom, Jenn and Amy alternated between rubbing my feet and handing me buckets to throw up in (I still marvel that they could even stay in the room…) while Scott rubbed my back texted Christina and repeatedly said ‘I’m
So sorry babe…’. In his telling Christina of the pickle I was in, I wasn’t sure what she was going to do but I assure you I never dreamed it would be so sweet as to instantly appear with an IV pole from 3 floors above to this tiny biopsy room, access my port, and start pumping me with fluids and anti nausea meds. Scott, ever vigilant about inquiring if I took my pain meds (aka, annoying at times and it stinks even more when he’s right!), was unfortunately spot on (without me having a clue …) when he asked if I had changed my pain patch. I had mentioned it that morning and his fear was true. It is about 2″x4″ and sticks to my chest and lasts for 3 days (Fentanyl o’ greatness). It came off in the shower on Monday night so I didn’t re apply and decided it could wait until the morning – and then I forgot. Jenn offered to go home and get a new patch and Scott had her on her way immediately. 

As Christina’s anti nausea meds went in, so did the biopsy needle. It was numb but not numb enough and I just wanted to be done. Thankfully, Lamont is kind and quick and with quite the audience he took 5 samples of tissues and I was able to contain myself from throwing up on him. But, unfortunately, I still didn’t feel any better. When my patch arrived and after that I lay awhile longer on the biopsy table, I semi-clothed myself enough (imagine hospital gone w a robe and wheelchair … ) to stalk Christina for more medicine back on the 4th floor. About the time I hear someone from the hall announce my wretching with ‘there’s a sick one in room 1…’ Christina comes back in and to my rescue with additional pain meds. And questions … has anyone you’ve been around been sick? Did you eat anything funny last night? And then the kicker question came as Dr. Osborne rounded the corner to rub my back and join the discussion … how long did you have your pain patch off? when should it have been changed? Mr Medicine in the background piped in, checking the calendar on my phone with its notices about my medicine schedule, to inform all that not only was it off overnight but it should have been changed on Monday morning. The mystery was solved. Dr. Osborne explained that I had sent myself into withdrawals.

Yall. I was bit hard by a cold turkey. I had inadvertently and ignorantly sent myself into withdrawals from 100mcgs of some heavy duty pain meds 24-36 hours previously. Dr. Osborne begins commenting on my dilated eyes and trying to sweetly and gently describe ‘habituation’ versus ‘addiction’ but all I could think was … I only thought I had compassion on friends in South Dallas who desired to be clean but couldn’t shake their bad habits. Y’all. That. Was. Awful. And it made me angry and sad on behalf of people of all ages who get addicted and desperately want to be clean but have to try to subject themselves to such a horror as detoxification to do so. So, all the more, I admire the folks, especially those that may have limited support resources for the medical and emotional backlash, who fight through it and come out sober on the other end. I applaud you. And the facilities that help you fight for it.

And let’s just say I got a ‘crash course’ (pun intended) in opiod management. I honestly, until Christina educated me on the ‘heft’ of my patch compared to my seemingly powerful little pills for breakthrough pain (‘drop in the ocean by comparison…’), I really didn’t comprehend the magnitude of pain management I require for daily living. I was thinking that when the patch came off and I didn’t feel back pain I could wait until morning to re apply my patch. Never. Again. And this learning also came with a huge relief because I had a sense that the intensity of this incident seemed different than the intermittent vomiting episodes I have and am just really thankful that, Lord willing, this is something I can prevent ever. happening. again.

And, as if the body wasn’t already struggling, there were more hits to come. I got my first little dose of the impending bad news between vomiting episodes while Christina was hanging out with us in the biopsy room. I inquired, ‘have you seen the MRI report for the brain yet?’ In these cases, a pause is never good. She paused. And then replied, ‘I kept expecting that question yesterday…’ Hating that I was now putting her on the spot but sensing that she had information we wanted, I asked, ‘does anything in that report explain this vomiting?’ Oftentimes, headaches and vomiting are warning signs for neurological issues. Following her ‘yes and no’ comment she informed us that Cheek would have the detail we wanted but ‘yes’ the MRI showed additional brain metastasis and ‘no’ it didn’t explain the nausea because, thankfully, isn’t swelling around the lesions.

We proceeded as planned with the Dr. Cheek appointment at 2 and he confirmed that, since our last scan in November (which not only showed no new lesions it had healed so nicely from the previous stereotactic radiation that they couldn’t even see scar tissue!), we have 5 new lesions on my brain spread across the frontal lobe on left and ride sides. Not. Good.

The hopeful news is that, like we experienced last summer, they can be effectively and quickly addressed with very focused radiation to those specific spots. It is also an option to do ‘whole brain radiation’ which is less ‘efficient’ because this is daily radiation to the whole brain mass for 3 weeks but has upside of defense of lesions that are likely there and just not yet visible. The number of lesions I have is right on the cusp of the deciding line for whole brain or stereotactic. We initially opted for whole brain radiation because that option, though more intense and harder on brain, would help qualify me for a new trial being done for breast cancer patients with brain metastasis. However, we later read more fine print of that study and learned that I am excluded because I have previously had one of the drugs that is being studied. Boo. Big boo.
The sweet part of this story is that I can clearly see how the Lord was in the details to direct our course of treatment. Through a quick passing conversations with, Nancy, the research nurse I love who ‘just happened to be at her desk while I was waiting to talk to Christina…’ (aka providence that she was there at that time and our friendship is such that I wanted to stop and say hello) and a ‘random inquiry to Christina about when to consent for the trial’ (aka providence that the Lord prompted me to ask about signing consent forms to initiate the qualification process) and Christina’s reply of ‘let’s ask Nancy when we should sign…’ (aka providence of a thorough nurse) and Nancy’s quick opening of her protocol binder to the list of other exclusions (aka providence that Nancy is sooo detail oriented and good at her job and even remembered the name of one of many research drugs I was on last year!) to provide the right answer at just the right time. We learned all of this at the very end of the day on Thursday and were meeting the next morning with Dr. Cheek to map the whole brain radiation plan. Or not. Thanks to His providential direction. He’s got the whole world [and my whole brain!] in His hands…

So, on Friday, instead of outlining the plan for whole brain radiation we mapped a timeline for how and when to ‘zap’ these 5 spots on my brain which, we think, will be in ~2 weeks.
Also on Thursday, between my 2 scheduled appointments and providential unscheduled appointments, we loaded our brain with the news that the biopsy results confirmed that the lump on the left side is, unfortunately, cancer. The glimmer of good news arising from the cancer diagnosis is that we harvested tissue to test for additional bio markers and pathways that could help craft our treatment plan. We can’t easily extract tissue from the liver, brain, bones or bone marrow so I am praying that this additional tissue and testing provides a helpful piece of the puzzle.

And, one more thing … did I mention it was a wild week?! Well in between Wednesday and Thursday when I had 2 appointments at Baylor I also made 3 separate trips to Methodist Dallas. My precious grandmother was sent from her doctors office to the ER on Wednesday morning for a blood transfusion for anemia. And that went from simple to very serious after a short conversation about her congestive heart failure and 2 leaking heart valves and internal bleeding when we decided (with her totally alert, pain free, giving input and happy as a lark) that we wanted to pursue hospice care for her instead of intervention strategies. Yes. You read that right. She celebrated her 97th bday on Tuesday, went in for routine blood work on Wednesday morning after some shortness of breath for the previous week, and by the end of the day on Wednesday we had chosen an-home hospice care facility that would keep her as happy and comfortable and content as can be as her old body wears out. As she put it, ‘I’m allergic to pain and not scared to be addicted’ but that’s a little ironic from a woman who is only on a handful or so medicines a day and most of those are supplements. But, what really rocked her world when she got back to her facility was not the trip to the ER or plans for hospice care but that she somehow has bed bugs and was kicked out of her room! Can’t a 97 year old just listen to some sports, walk to the dining hall, talk on the phone and eat what she wants (…her only requests) and go be with Jesus in peace?! Ain’t nobody got time for bed bugs. That’s more than enough weekly drama for that beloved 97 year old – or this 44 year old.
It has to be enough because I’m afraid your fingers are tired from scrolling down on your screen and that there’s maybe only 3 of you, max, who are still reading. And since that’s probably just both of my moms and they know all of these stories firsthand from Baylor or Methodist maybe I’m writing for no one? For the other person, or maybe 2, who might still be reading I just want you to know that I am giggling at the thought of our ‘private conversation’ and admire your perseverance. 
And, whether you too feel like life is a wild ride or you’re being bitten by a cold turkey or you’re overwhelmed with more bad news or there’s been a ‘can’t handle one more thing…’ nuisance like bed bugs, I hope you too can see that He has the whole world in His hands. Because He does. And He loves you. And me. And my Grandma. 

And while I have no idea how or when this wild ride will end for her or for me, I know with great confidence Who will meet me and her on that glorious day. And I pray the same confidence for each of you.

I am held and loved. I feel as secure and cozy and content and happy as this little guy in his hammock. 

Please don’t eat him when you see him next.

We’ve also learned this week that when he grow up he ‘wants to be a tile layer and build houses with my daddy.’ We are starting him early. 

The ups and downs of life’s wild ride is better with friends. Thanks for being ours. And little man loves his. 

 And sometimes life just feels like too much. Like when I sat down and broke this chaise lounge.
 But at the end of the day, it’s being with the people we love that really makes life as sweet and messy and great as smores by the fire. 

 Goodnight💗

Heaven 101

It’s been a wild week and some new developments and highs and lows (more later…) but FOR SURE the highlight of  our week was Saturday morning discussing heaven with friends. It was precious to meet new people and be with so many friends – surprise friends from Houston and Oklahoma and other Watermark friends I haven’t seen in a long time plus family and those that are near and dear walking this road closely with us.  I loved doing it with Scott though he’d be quick to say his part was short – I don’t disagree but just fun to hear him articulate our story and Gods provisions and sit with me to interact with the group. The group was great and shared honestly about their fears of the unknowns as well as asking  many fun questions … Will we recognize each other in heaven? Where do we go immediately when die? Do people in heaven see us on earth? Where is heaven? What about babies and unborn children? What about pets? What will we do?! The people that came were sooo engaging and I loved it. And wanted to share it for that if that are interested. I’ve been blessed by those of y’all who asked if it was recorded and wanted to listen. 

As you wish…

http://www.watermark.org/dallas/ministries/training-day  

My not-so-fancy handout: