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