Pain Pain Go Away…

Hi guys, it’s Jamie again.  Jen asked me to update her blog so here I am.  🙂  I love that when I ask Jen to give me the highlights of her health journey so that I can post accurately, her text is SO LONG that it has an arrow at the end.  Has anyone even seen that before?  No.  Is anyone surprised by this?  No.  I’m the first one to tell you I write long texts, so I have no business throwing stones. But mine has never had an arrow at the end indicating ‘there’s more’.


See that little arrow on bottom right (>)?  When you click on that bad boy an ENTIRE NOVEL pops up.  I’m not kidding.  Oh how I love my verbose friend.  I’m debating on whether or not to just cut and paste the rest of her text and call it a day.  As much as I’d love to, however, I’ll try to do this post justice by relaying HER words through MY words.  (I can just see Mrs. Merryman, Señora Plexco, Coach Hines and Mrs. Snell harkening back to the day of hearing both HER words and MY words all day long while trying to use THEIR words in class – so sorry about that!).

Anyhoo, Jen is doing this in Florida right now in case you are wondering.


While Linc is doing this…



And while it all looks and sounds like a little piece of paradise, she is still hurting a bit as you can read above in her text to me (right before the ARROW indicating you are about to read WAR and PEACE).

And while I was joking about copying and pasting Jen’s text, I just finished reading it and I am totally going to copy and paste it.  She even wrote it as she were writing a blog.   And she called herself out on it at the end of her text.  Like why didn’t she just write the darn thing?!  And it’s a good thing because the end is actually all I ever read.  In ANY novel.

So here is Jen’s latest update:

– started radiation to spine and hip/femur on Tu – going well until Friday and back pain that escalated to 10 by Sat if, heaven forbid, I needed a deep breath or cough or LAUGH. Pain was in new area and felt like a broken rib.

– doctors on Monday speculating that back pain is bc if radiation and as they target the spine it causes temporary inflammation that is pushing on nerves along the left/right of the spine (T8-T11 for the medical peeps). The original pain which prompted radiation for relief was on left side so I didn’t connect it to radiation when the pain was on right side but makes sense when it’s explained as mirror image of original pain and inflammation from the spine.

– expected to also likely have tummy issues and esophagus issues nc radiation waves cross all those areas but nothing too troubling yet.

– I’ve had 6 out of 15 treatments – at Monday’s appt (and via text from Dr O at 8p on the first day she arrived from a 2 week vacation … Who does that?) I learned that my liver numbers were up

– these ‘tumor markers’ are supposed to be 1-6 in healthy people and when I first got diagnosed in Feb 2012 mine was 1.2. When re-diagnosed as stage 4 (Dec 2014) they were 25 and over the last 18 months have, on average, stayed in that area w some bounces up to 60 but also coming down to 11 when various chemos worked for short seasons. So, NOT GOOD when the same number that was 30 on last blood test was 140.   Dr O had two possible explanations: 1. Not good or 2. Can happen when chemo kills a lot of cells that are dead and turn into protein before they can be flushed out of liver (or something like that?). If it’s 2. we would see them start to go down after first cycle of chemo (cycle for this round is 2 weekly treatments and then 14 days off) and I was at the tail end of first cycle w chemo again on TH if my other numbers were high enough.

– based on blood work on Monday, we were very pleased to hear that both the ‘tumor markers’ they measure were down from 140 to 120! And are THANKFUL and HOPEFUL they will continue to come down. I don’t really know what 140 means but something tells me that being 40-45x the max of normal/healthy range just might not be a good sign for my livers ability to do its job

– in other blood news, the numbers for white and red blood cells were pretty low (expected on this chemo). Not at dangerous levels (i.e. not needing blood transfusion) but at ‘wash your hands and don’t get sick and if you get a fever call me immediately…’ levels.

– as for the don’t get sick, it wasn’t such good news to find L sooo hot yesterday and not eating breakfast or lunch and telling him his throat hurt and requesting a nap. Who is that kid?! In my mom-greatness (or denial) I didn’t connect dots of potential sickness until he put his face against mine and I felt the temperature. And what does any good mom do in that situation!? Ice cream. And while he’s not the most photogenic kid (Scott and I blame his parents) I think it’s funny that he can’t take his eyes of the ice cream even for a picture.



But the best news of all is the location of the picture and the timing of bad news mingled w good news and needed rest… In the picture, Linc is at gate 5 headed to the beach. Or, as Scott overhead him telling his teacher at school when he picked him up early yesterday, ‘I’m going to the beach. It’s called Summerside.’ Or Seaside?! Tho actually it’s neither and we are going to a friends house in Rosemary Beach with a couple girls and then repeating our fall trip to Watercolor (sooo thankful for generosity of the Harrells!) with friends and family starting Friday when Scott and the rest of the gang arrives.

Speaking of trips, I’ve gone quiet on blog so never shared the post hospital update that we decided, after 12 days in the hospital, that it would be too hard to spend 2 nights together as a family and then leave at 430a, without Lincoln, for Turks and Caicos. So, in our friends grace and kindness, they rescheduled the trip for us and we are sooo excited that it could be so soon. We are headed back to beach (sans a 4yo!) on May 14. As if we weren’t sooo excited before, this just gave us another month of counting down the days!

[Jamie again starting here]

Y’all.  This was ALL IN A TEXT.  A TEXT.  And I’m afraid to even ask her if she did it via voice text because that girl has mastered the art of voice texting.  We laugh because when I attempt voice texting with Siri, and say ‘period’ at the end of my sentences, Siri always just types out ‘period’.  That can be unfortunate in some situations.  But JEN.  She just bosses Siri around with her ‘period’, ‘exclamation point’ and ‘comma’ and Siri LISTENS.  I’m reduced to thinking Siri obeys me about as well as my children do.  Period.

And to make a long post even longer, I do need to interject one more thing before you get swept away with dreamy visions of Turks & Caicos, Rosemary Beach, Watercolor, etc.  This journey is not for the faint of heart.  It can take your emotions from ceiling to floor in about 2.2 seconds.  I’m sure those of you who are close to Jen or anyone with cancer can relate.  I can’t even wrap my brain around how Scott, Lincoln or Jane must feel.  My heart breaks for them.  And even though I’ve actually gone awhile without crying, the last few times I’ve been with Jen I’ve cried.  And by crying I mean super ugly cry – not dainty tears.  What is up with THAT?!  I think the Lord is continuing to remind me to cherish every moment I have with my people.  I often wonder if this experience with Jen has changed me forever in a way that I will not ever take my relationships for granted again.  I sure hope so.   Jen and I have had so much FUN through all of this that sometimes I forget what she is facing and how this will all end.  But other times something will trigger my heart and mind and remind me that our time together is limited.  Our laughs are limited.  Our hugs are limited.  Our times for sharing stories is limited.  Our times for her introducing me to fancy food is limited (and thank goodness for that ’cause my pants are getting snug).  And in those times, every single second feels like a gift.  I like to take a mental picture of these moments hoping that in the future I can somehow recall them with abundant joy.   I know we joke a lot both on this blog and in person. But I have to be honest that it’s getting real up in here people.  This cancer is everywhere. And it doesn’t want to go away.  I LOVE my friend dearly.  And I’m so very proud of her.  To watch her embrace life, embrace family, embrace friends and most importantly embrace Jesus in spite of her circumstances is one of the best examples of a true believer I’ve ever seen.   And I imagine God is up there putting a little arrow (>) in the bottom right corner of Jen’s life saying to her ‘there’s more’ to be done here on earth, good and faithful servant.  And for that, we are grateful.


Much love to you all,


PS: No one was harmed (or exhausted) in the building of this amazing sand castle except maybe the people who actually built it.  But it does make for an incredibly precious photograph, don’t you think?

PSS: Sorry for any typos, Leo Tolstoy, but I’m not ABOUT to go back and proofread this novel.



Pain, plans and provisions…

Well, friends, this has been a wild one. So thankful for B stepping in to bring you up to speed and solicit your prayers.Prayers bless us and remind us, ever so sweetly, that we are not alone. And that says a lot when pain keeps you from visitors and even texting. Who am I? I didn’t quite recognize the girl who didn’t have energy for friends nor cared about food (B confessed she gets most worried when she says she ‘will bring anything…’ and I decline or don’t eat!) nor texted nor showered but every 3 days. Not exactly like I was dirty with the limited activity of 3′ to bathroom and snail’s pace walks around the hall but this girl likes herself some clean even if it ain’t pretty. I went over a week without even going outside. Jennifer Lewis Clouse seems to have gone MIA in room 409 of Pickens.
Friends. That is all because … Oh my gosh the pain of Thursday morning was other-worldly. Still not sure why/how/what tried to kill me but on the way to the ER I confessed to Scott that death was far superior to that pain. Poor guy. What do you do with that? I don’t remember much but little flashbacks are more like images of bad tv where the girl is alternating between screaming bloody murder in the ER and crying like a baby begging the nurse at my side ‘you have to do something!’ They tried the ‘let’s work on your breathing to calm you down’ trick and let me tell what a girl in that situation can’t do … Breathe calmly. Scream?! Yes! Breathe?! No. I even remember one of those high-drama moments where out of nowhere a needle is stuck in my leg while they are trying to get the good stuff in my port and I am pretty sure that might have been an ‘anti psychosis’ something or other. Wow. I presume you understand that Thursday was awful?!

And as B brought you up to speed (thanks again my friend…) I really hope you laughed when you come upon the unexpected line about our car disappearing from the dropoff lane?!?! I still can’t get enough of Scott telling this story nor will I forget my legs crawled up around my chest and Scott putting both hands on them and saying (in his forever-calm-voice), ‘it’s going to be ok but our car was stolen…’ And since ‘our car’ also included my waiting-to-unload purse and wallet in the front seat and Scotts backpack, work computer and iPad in backseat. It. Was. Everything. 

I love Scott’s impressive teaming with Baylor Hospital PD (yes the image you conjured up is as unthreatening as reality…) and his genius first-time-ever-usage of ‘find my iPhone’ detective skills, he somehow recovered the car within :30 with everything but about $200 (even left visible $5 bills in bottom of my purse!) still in it. 

Thank. You. Lord. We’ve said over and over that we can’t fathom the stress of having spent the rest of our stay here canceling cards and police reports and replacing a car all from suite 409! And did I mention I haven’t been feeling well? Needless to say, we are thankful beyond words for the Lords protection and provision. And the list of those reminders of His provision is very long…

We spent the first half of our stay (his post started on Monday which is day 11 I believe but will finish on Tuesday morning by the dim light of monitors…) trying to figure out the source of the pain. Pretty quickly we concluded that it was a pain problem with a side of nausea – and the nausea was only because of the pain. In November, during our other (and now maybe to be expected for future as we are learning…) longer stay, we also had a nausea problem to address. Thankfully, this time, the nausea subsided once pain was under control. 

It’s hard for us and the doctors and anyone else looking at my charts to not need an explanation for such a quick onset of such intensity. But, by the end of last week, as much as we wanted real answers and solutions to fix the problem, we all resigned that answers were eluding us. And, in the most advanced medical terms possible, we have concluded (drum roll please…) I have: cancer-related pain. Yep. That’s it. Cancer. As my mom said last week during the zealous search for other answers, ‘we just want an answer that doesn’t start w C…’ But, the reality is, I have cancer. And it isn’t very nice and it is wreaking havoc in my body and in my bones.
In search for explanations, we did several MRIs and while they didn’t diagnose the source of accute pain they highlighted some high risk areas for impending fractures. It was funny to me that after each doctor saw the scans, they would come in and say ‘are you sure it doesn’t hurt when you walk?’ I think it probably does hurt but the previous pain management regimen was keeping it at bay and hiding the progression. 

Now that we’ve seen the scans ourselves and seen an inverted horsehoe of grey around my hips, pelvis and down into my femur, we see the problem they see. So, our next steps will be radiology therapy on that area as well as my spine. My spine, per inages, doesn’t seem to be as fragile as my lower pelvis area but, from my standpoint, I think it could be a source of the pain in the flank/abdomen, so we will   address those too. Those treatments are daily/short dosages of 12-15 radiation in the targeted areas. We are not yet sure if we can do the spine and right hip/pelvis/femur simultaneously or not but meet with that team again on Friday. And have chemo on Wednesday. 
Once we turned the corner from diagnosis and pain control to simply pain control, it has been an interesting process of deciding which medicines and how much of each and how to balance oral meds (which can be taken at home unlike my very happy relationship with the button at my bedside) with my pre existing ‘happy patch’ of fentanyl for the right ‘morphine equivalent.’ As well, we are coming to appreciate that with these new combinations come ‘new normals’ as it relates to an acceptable level of pain and acceptable level of activity (given the known side effects of fatigue and not wanting to ‘overdo it’ on pain management side and limit life involvement with grogginess). 
My pain, with the new combinations we’ve been building while here, is under control and I am sooo thankful. I think my emotional confidence in that plan has lagged by a day. Sunday, when the pin management doctor mentioned ‘going home Monday if they unplugged all of the Iv pain management options’ was unexpectedly scary. Scott lit up and I panicked. But, with his encouragement and a little time, my head and heart caught up and I expect I will be released Tuesday or Wednesday depending on how the nights go.
Speaking of nights, Scott has happily and steadfastly taken up his little sleeping spot in 409 and a little desk space for work too. He comes and goes for appointments and meetings, has a new running route or two from Baylor, and provides a palpable sense of security with his presence. He’s been a rock. For me and for this preciousness too. They shared Scotts cozy sleeping spot for a Sunday nap.  

 Revive my heart.

Poor guys were worn out after this raucous game of pillow fighting ok Sunday. This was approved for ‘hospital  play only’ using their plastic pillows and not at home with anything we might actually use.  

 Lincoln has been with his beloved-but-not-biological Aunt Steph. I daily marvel at the compassionate, empathetic, availabile, likeminded, heart, capacity and perfectly provided and ordained gift she is to our family. And as if it mattered what I think … Linc adores her. And, so sweetly, that feeling is mutual. In my pained and panicked state on Thursday morning, Scott called to ask her to take him to school so we could go to the ER. And he has spent every morning and night with them since.  When I think of Steph and Ted, my mind lands on Psalm 92 … 

1 It is good to praise the Lord and make music to your name, O Most High, 2 proclaiming your love in the morning and your faithfulness at night, 3 to the music of the ten-stringed lyre and the melody of the harp [oh yes we have with Miss Mary…] 4 For you make me glad by your deeds, Lord; I sing for joy at what your hands have done.
In our hospital stay (and well beyond) the evidence of His goodness to us is worthy of ‘singing for joy at what His hands have done…’ (and, trust me, that has been done through tears in these halls) but the daily reminder that our God perfectly provides for our most precious 11-day-concern is grace upon grace! And more grace upon grace on top…

Here is our Aunt Steph and her daughter in law, Judy:   

 She has taken care of everything we could have possibility thought of for him. And then some. As I type l, I am waiting for her to bring him up to have dinner with us. A healthy dinner that she has cooked (and probably let him help!) so he can come have dinner with his parents bedtime. As precious as it is, it stinks that a kid has to eat dinner with their mom at the hospital while she’s tethered to pain poles and our play area is limited to a hospital room and grounds. Thankfully, yesterday, he said ‘dad, do you like staying at the doctor?…’ I wondered how Scott would respond and can’t even remember because was so sweet to hear Lincolns follow up: ‘I do.’ And despite the cords, I admit he can make it fun. Here are some highlights from Sunday’s visit and the discovery of roly ploys and caterpillars in the prayer garden.  
 While I indeed loved being with my little man I feel like this smile is a bit inflated. This is probably me saying ‘your dad would love to see this guy … I have no idea if he is poisonous … I don’t know what kind of caterpillar he is…’  

This smile is a bit more legit because watching ‘fasty’ (named by little cuteness there) transfer from one of us to the next was quite thrilling for family fun. 

And then you can always come back to the room and let Juju read and answer ‘what does …. mean?’ for the umpteenth time. 

 In honor of some family fun and time together, all a Mama wants is a cute picture – right? Why all the fuss as at even the mention of the word ‘picture’?! And why all the nonsense that must follow? See above with Steph for more evidence. How about just a 2 second smile and we can all wrap this up? John Travolta hands completely unnecessary. 
 But, then, after coaxing to get that nonsense, this happened…  

Not posed. Not even requested. Not goofy. Just a boy. With a real sick Mama. Playing in the prayer garden while she is connected to pain meds and fluids. Celebrating that God is good. God doesn’t make me mistakes. We can trust Him. And as much as I love this little boy and the daddy that has been by my side (and thankfully sound asleep as I rouse for pain meds and realize I didn’t finish this post) I can rest knowing God loves them even more than I do. And that’s A. LOT.

Thanks for the ways y’all have all loved all of us. And that’s A. LOT.

We have had lots of pain and lots of changing plans to manage life and pain and now passed 12 days up here and our God has perfectly provided.

Psalm 92:4 For you make me glad by your deeds, Lord; I sing for joy at what your hands have done.

When in Doubt, Accessorize

So everyone knows how much a gal loves to accessorize, right?  Jen is a perfect example of this (has anyone SEEN this girls’ jewels?!).  She’s dripping in diamonds and 14,000 bracelets on any given day.  Or on EVERY given day, rather.  We had a great conversation about this on Monday because our friend, Amy, always seems to coordinate her jewelry perfectly with whatever she’s wearing.  And she has 4 kids.  I can barely make it out of the house in anything other than workout clothes and maybe a pair of fake studs.  And I have one less kid.

Anyway, the point being that Jen noticed the next day when I stepped up my game and swapped out my fakes for the real deal because I finally took time to transfer the one and only pair of earring backs I have from one pair to the other.  And that even wore me out.  But nonetheless I got props and it reconfirmed to me that Jen is an accessory lover of sorts.

Well, when Dr. O suggested that Jen might need to start using a cane because of the fragility of her hips, any old (lady) cane was not going to do.  We had the best time searching for CANES online (seriously, we did) and came up with this little number.


I’m not joking.  This is going to be Jen’s new accessory and Dr. O said she should name it.  So…if anyone has any suggestions please let her know.  (This reminds me of when I was in elementary school and the Dallas Zoo got a new baby panda.  Or maybe it was a giraffe.  Either way, our class submitted names for the contest and it was all kinds of fun thinking mine might be chosen.  It wasn’t.  But knock yourself out with those names.)

In other news, Jen also thought the fuzz growing in on her hair was a little too black for her liking, so this happened.

IMG_2046-1.JPGI love this pic for so many reasons, but mainly because it corroborates what I was saying about Amy’s jewels and Jen’s bracelets.

After the salon party, Jen was much happier with her shimmer from a box.  However, because she is now starting a new chemo (and actually had her first round at 10pm one night this week), this shiny new fuzz will soon be gone.  But the memories and laughs WILL NOT, I assure you.

And speaking of memories and laughs, during a riveting conversation this week there was a knock on the hospital door.  A lovely Baylor volunteer named Mary came in with her mobile harp (who knew this was a thing?!) and asked if Jen would like for her to play.  I was certain it was going to be a ‘no’ because we still had a lot of ground to cover.  However, Jen sweetly said ‘please come in – I’d love to hear some hymns’.  And that proves Jen is either nicer than I am or more of a people pleaser, cause I’m gonna be honest I was ready to finish our conversation.  It was surprisingly beautiful, however, and I found myself glad that Jen was either nicer than I was or a people pleaser.  The only bad news was that Jen had just taken a little concoction of things to help her bowels move and Mary wasn’t about to let up on ‘How Great Thou Art.’  See Jen?  It’s okay to say NO.

All kidding aside, Jen is still in the hospital and still in pain.  She pushes that morphine drip like a man mowing his yard on a Saturday morning in spring.  (Not really, but I got going on the analogy and could’t stop myself).  But she is STILL IN PAIN.  Her palliative care doctor, Dr. Casanova (I just love saying that), visited a lot this week and let her know that she would most likely not be leaving the hospital until early next week.  She is settling in, however, and this stay is not nearly as awful as the one in November.  Jen is even doing her taxes in bed and not antsy to leave.  And Scott has his mobile office all set up in the room as well, complete with a laptop and blueprints.  I wasn’t trying to be nosy, but I know someone has got a fancy master bathroom on the horizon.

As for little Linc, he is doing REALLY well with Stephanie, Mandy and lots of other friends.  I’d say SOMEONE is having a riveting conversation of their own on this trampoline here.


I really want to tell Linc’s little friend (I think this is Andrew) to speak quickly because if a nice lady with a harp comes around the corner, you might not be able to finish those thoughts!!!

Here’s another sweet pic of Linc’s rendition of SPRING SLEDDING:


Lincoln is doing well on his visits to the hospital.  He did tell Jen, ‘I don’t like your doctors because they keep you away from me.’  And to that I say AMEN LINCOLN!  This precious little soul has experienced so much more than most 4 year olds, but the Lord is always quick to remind me that He has very unique plans for Lincoln and that all of this is just training ground for the finished product.  I had a good cry with Jen about missing my time with Lincoln.  I get the benefit of being with HER so often which I do not take for granted, but my heart breaks that my bond with the little man is not nearly as strong as it once was because of our lack of time together.  I know the Lord will work that one out as well in time, but it’s these kinds of emotions that you can’t prepare your heart for.  So thank you to Stephanie, Mandy, Jenn, Molly, Cynthia, Jane, Gigi, Miriam, Lezley, etc. etc. etc. (there are so many I can’t even list them all) for swooping in and LOVING Lincoln through this difficult time.

And to all of YOU, thank you for continuing to love all 3 of the Clouses.  Tears are streaming down my cheeks right now because of the beautiful way you show them how you care.  It’s unbelievably touching and so completely overwhelming.  Much like our Father’s love for us.  I’m just thankful He’s making that so tangible right now.

Well…how I got from a champagne pink cane to a sobbing mess so quickly is lost on me.  I guess this is just how the cancer journey goes.  Thanks for hanging in there with us.

God speed and good accessories,

Jamie (aka B)