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.
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…’
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.