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’.

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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.

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While Linc is doing this…

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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.

 

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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.

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Much love to you all,

Jamie

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.

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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.

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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:

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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)

 

 

 

 

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)

 

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…