In short, my blood pressure is up and our hopes for the trial are down. Thankfully, my hope is not in trials…
That was the executive summary but here’s ‘the rest of the story’ for those of you who are accustomed to my ramblings…
Went in last Th for a regular appointment and blood pressure was 169/100ish. For you non-medical folk let me translate: that’s bad.
It’s been trending higher and higher over last couple of months and Dr. O doesn’t much like it so had me at the cardiologist the next morning. Thankfully my heart looks perfectly healthy and though he doesn’t know the cause the solution is the same – a little pill that costs $4/month (even without insurance). So I have a new little pill in my collection and hopefully the numbers will drop. I have my own little BP cuff (one of many things I never expected to own or thought I would say…) so will be monitoring it myself and go back to cardiologist next week.
The bigger news in the appointment was learning that the drug company sponsoring the trial has told Dr. O that since Baylor got the third (and last) open spot they won’t get one of the next 3 slots. She tried to lobby for me since I was ‘already in line’ and they knew my story but she/we were reminded that other women in other places are in line too. I could tell this was disheartening for Dr. O. And she’s not alone. Since I won’t likely be getting on the trial (or at least not anytime soon) she changed one of my medicines – it has a longer wash-out period so she didn’t want that to delay the trial but now that’s not an issue in foreseeable future. The new med (Exemestane) is paired with Palbociclib (see last entry for more info) which I’ve taken for the last month (it’s taken every day for 3 weeks and then a week off). I don’t notice a difference in the new drug – exemestane is also a anti-hormone drug but it works a bit differently than the former drug, Letrozole.
In the big picture, every time we change regimens it is a reminder that we are playing defense and we are well beyond the ‘standard of care’ protocol. Most of the research dollars in breast cancer are used to prevent people from getting to my stage through early detection (girls get those ‘girls’ checked out with a mammogram if you’re 35 or older!) and by treatment for women at earlier stages (non life threatening if contained within the breast) than progressive or metastatic (meaning it has metastasized to other parts of the body) disease. I totally get that and understand – I am in the smaller percentage and I too want as few women as possible to ever be stage 4 (another way to refer to metastatic disease). But, as it happens, that means Dr. Osborne has fewer options for me and fewer research studies to help guide her plan and fewer drugs to choose from for my treatment. As Jamie and I debriefed that appointment on Th we both admitted that we can still visually recall a long list of options she shared with us several months ago (in preparation for my trip to Houston to see the other Dr. Osborne) and it seems like we are checking those off a little faster than we would have hoped or expected. We aren’t sure what happens at the end of that list and we haven’t had the courage to ask her ‘so exactly how much is left in your bag of tricks?’ but it seems to me that we are cycling through the options faster than I expected. She changes course at any point she knows they aren’t working. And, in short, nothing seems to really be working that well. That’s not to say that some tumors haven’t shrunk or stabilized but since others also seem to surface she has redirected us each time to a new regimen. And we are now closely monitoring the lump on my neck because it seems to be getting larger but we also want to give these drugs long enough to see if they’re working and not ‘jump ship’ too soon.
Like I said above, thankfully our hope and confidence aren’t in Dr. O or trials or medical advances. But in the gracious One who numbers my days, sustains my joy, offers hope for healing (if not on earth then forever in Glory), provides friends and family to walk/laugh/cry/pray with us, and continues to remind me that He alone is worthy of my trust. I may be a really sick girl with cancer in my liver, lungs, bones and brain … But my heart is good … And not because the cardiologist said so but because of Jesus. It is well with my soul.
How fitting that these are the verses from this weeks Bible study* in Psalm 16…
1 Preserve me, O God, for I take refuge in You. 2 I said to the LORD, “You are my Lord; I have no good besides You.” 3 As for the saints who are in the earth, They are the majestic ones in whom is all my delight. 4 The sorrows of those who have bartered for another god will be multiplied; I shall not pour out their drink offerings of blood, Nor will I take their names upon my lips. 5 The LORD is the portion of my inheritance and my cup; You support my lot. 6 The lines have fallen to me in pleasant places; Indeed, my heritage is beautiful to me. 7 I will bless the LORD who has counseled me; Indeed, my mind instructs me in the night. 8 I have set the LORD continually before me; Because He is at my right hand, I will not be shaken. 9 Therefore my heart is glad and my glory rejoices; My flesh also will dwell securely. 10 For You will not abandon my soul to Sheol; Nor will You allow Your Holy One to undergo decay. 11 You will make known to me the path of life; In Your presence is fullness of joy; In Your right hand there are pleasures forever.
These verses are as true for me as they were for David when he wrote them. Truly, ‘I have set the Lord continually before me; because He is at my right hand I will not be shaken.’
Thanks for celebrating with us that He is our family’s refuge and the source of our security such that we will not be shaken. That’s not to say that I won’t be sick and it won’t possibly get much much harder but just that our hope and my future are secure. He upholds us.
With love and thanks for all of your pink prayers and love,
*Speaking of Bible study, any and all of you women are welcome to join me, friends and Kay Wyma as she and I lead us through a study in the Psalms. We meet on Tuesdays at Church of the Incarnation from 9:30-11. For more information or to get access to the recordings/audio, you can email Eraina at firstname.lastname@example.org.