From Dr O:
It is good! The lesion is smaller and nothing new seen. Full report still pending. Sorry you have been having nausea but at least doesn’t look like brain causing problems…
From Dr O:
It is good! The lesion is smaller and nothing new seen. Full report still pending. Sorry you have been having nausea but at least doesn’t look like brain causing problems…
It’s been awhile since I’ve posted … and it’s definitely a “no news is good new” situation. Or, sometimes, I am just too lazy. But, I assure you if I am in need or in trouble, I will post … I’ve learned how valuable your prayers are and how sweet your encouragement is. I’m pretty much spoiled when it comes to prayers and care and concern so I assure you we won’t attempt to walk through a dark valley or season alone.
In the last couple of weeks, I’ve had a really fun girls trip to Florida (gotta love being the beneficiary of a generous husband sending his wife away with her friends!), some not-so-fun bouts of nausea/headaches, and started new meds (palbociclib). As mentioned in previous posts, these meds, combined with the anti-hormone therapy I’ve been on for awhile (Letrozole), are an interim solution. Hopefully, I can be admitted on the trial in the next few weeks. The current plan (with palbociclib) is a viable option and I had some positive results previously (when I was on the other trial) but Dr. Osborne likes the options of the trial even better. You may not remember but when I was on this drug before (combined with 2 other drugs), I had very positive internal results (liver and lungs and lymph nodes around stomach decreased) but simultaneously developed a recurrence of inflammatory breast cancer … so, needless to say, this was very confusing. Likewise, in my most recent scan, even in the same organ (liver) we see positive and negative responses – the big tumors got smaller but then new tumors appeared. How shall we say it?! … WEIRD! Dr. Osborne agrees. It has made me wonder (in my very ignorant non-medical mind …) if I could possibly have 2 different primary cancers? She validated the question and reminded me she has tested for that possibility (and even mentioned wishing she could take multiple samples of liver for the same reason but wouldn’t be prudent for my health even though would be fascinating!) but also reminded me/us that cancer is tricky and crafty and, especially mine, seems to have some wildcards but its also known that, over time, as the cells multiply they can be rather heterogenous even from the same primary cancer. Did I lose some of you?!
With the new meds I had hoped that maybe the hair loss would subside but no such luck (side note: I actually edited today and just found that I had originally typed ‘suck luck’ inadvertently – or maybe subconsciously?!😜 Made me laugh – had to share). My hair was still coming out in fistfuls with every brush or shampoo and getting thinner and thinner. Yesterday, during church, I ‘surrendered’ and decided to cut it off. My sweet friend, Becky Carswell, cuts hair and offered to do it for me right away – so within a few hours of making my decision I had short hair! I was thankful because once I decided, I was READY. So, I now have really short hair again:)
Last Thursday, I went in for some bloodwork and to get my monthly bone-strengthening infusion and while I was there, Dr. Osborne called me (I was going to lab and infusion center but not seeing her …) and expressed concern about the nausea and headaches. There doesn’t seem to be a rhthym or pattern and I’ve never experienced migraines (thankfully, these headaches aren’t like that but she was confirming that I don’t have a history of headaches). So, in her typical amazing-thorough-thoughtful-no-leaf-unturned-Dr.-Osborne-way, she requested an MRI. The MRI folks called just a little bit ago and scheduled it … for tonight! How about that for fast service? If I recall correctly, the MRI results come back relatively quickly (1-3 days) so I will get back to y’all as soon as I know.
in the meantime, thanks for caring and praying and loving us all.
In my last post I energetically reported on a trial that Dr O was pretty excited about. And she still is! But, for me, not yet…
The other patient has been waiting for 6-7 weeks and we found out she was technically ahead of me so I didn’t ‘make the cut.’ With this call/news, I had some tears. They were unexpected. I am sad because I had in mind ‘that was the plan…’ (and you can ask Scott or any of my friends or any of the counsellors I’ve paid hundreds of dollars to but, for better and worse, this girl likes a plan and order and not waiting…) and I had to redirect and rewire my mind. Things change real quickly in this crazy cancer world so it shouldn’t surprise me as much as it does. I think I’m still ‘recovering’ from realizing that we are already changing the plan (again) after 2-3 months or so of this chemo and it seems to me like we are burning through the handful of available treatments a little faster than I expected once she doesn’t think they are still effective for me. Also, Dr O is so hopeful and excited about these trials that it’s contagious. I also cried because there was a sweet moment where the Lord whispered in my heart that He loves me and He loves her (whoever her is…) and that maybe she needs the trial more than I do?! So, I surrendered. Through tears of sweetness knowing that He is good and trustworthy, I surrendered.
And then I went to my happy place. A massage. And even happier, it was free. Used my little punch card and took my ‘free tenth’ massage and the ghetto-fabulous greatness of Sole Therapy. Then, I got back in my car and almost immediately got a text from one of my ‘breasties’ Sterling about one of the girls I met in October of 2013 at a Stars game honoring breast cancer. She had just been diagnosed and she had just had a baby. And, now, she has died. At age 30. With 2 little boys. Though I’ve known that if I make friends with other breast cancer girls and even join friends to start a ‘pink not grey’ support group for young patients (average age for diagnosis is 62) then I can expect that we will have to watch some of our friends die. But Ashleigh was the first. I haven’t seen her since that hockey game but we’ve texted (we connected over my inflammatory because that’s what she had too) and her ‘breastie’ (seems like God pairs many of us up with someone walking a similar road at the same time) is another girl named Shari who I know better and comes to our meetings (and she is the one who had broken back which Lord used to prompt/prepare me to not ignore my back pain). So, long winded way of telling you that when I got back in car and had learned only hour earlier that I didn’t make the trial, the news that Ashleigh had died while I was on vacation came with a crushing weight. She knew and loved Jesus and spoke boldly of his grace but wow…
And if you just need a good cry or want to clean our your tear ducts or make sure you are human with a beating heart, you can read some of their story and her grace at myjourneywithibc.blogspot.com. But grab some tissues before you get settled to read.
And on top of all of that somebody in FL stole my credit card number and went to town online at Macy’s and at Champs and hooked themselves up (literally?) with $364 at Comcast. Nobody. I mean nobody has time for that.
So let’s just say it wasn’t really my happiest week.
But, in encouraging news, Dr O has already gone to bat for me with the drug company who hosts the trial and initially declined me for participation (based on disease and past treatments). In some fine print technical reading she challenged their conclusions and they came back to her and gave me initial approval for the trial and I am first in line for the next accepted group of patients – she expects 6-8 weeks. And, again, she called me after hours to talk through options and has a plan to put me on 2 drugs that work similarly to the trial I was on (but it had 3 drugs – one in a lower dosage which she didn’t like) and can give me greater dosages. And these drugs have a relatively fast ‘wash out period’ so as soon as there is an opening I can stop these, said the requisite amount of time for them to clear my system, and start the trial. And, in the meantime, maybe my hair can start growing back! It comes out in fistfuls with ever ywashing or brushing (which makes me limit both) and let me tell you what isn’t super attractive … Super thin hair that isn’t super clean or brushed! Now, maybe my hair will get a break and these drugs can beat up on another part of my body for awhile (most likely my energy).
I appreciate the prayers for me to get on the trial and now you can pray that we will continue to patiently wait and graciously surrender. I also would love for you to pray for Ashleigh’s family. And, like hers, when my day comes (whether that’s next year or the next decade) I ask you in advance to pray for Scott and Lincoln and my mom(s) and grandmother and family and friends. Death is never good. Gods plan was always for life and that was/is painfully interrupted by sin and death. For me, death won’t be permanent – merely a gateway to enter the presence of my Savior and live with Him there. But until Scott and Linc and family and friends join me, it will be permanent for them. They will need much prayer for supernatural strength and peace and joy. I thank you in advance for your care and prayers for them.
Dr. Osborne called tonight (after a house call … How amazing is that in 2015?!) and gave a general overview of the CT results:
– 2 larger lesions in liver are smaller
– 4-6 new lesions in liver
– small mass in lungs (slightly bigger than previously seen on scan)
– neck nodes don’t appear to be cancer but confusing/different when compared to other side
Between the neck and the differing results in liver, we are in the realm of the bizarre. She wishes she could get tissue (via liver biopsy) from both the new lesions and bigger ones but, in her words, ‘don’t want to make you a pin cushion.’ So, though we had a liver biopsy scheduled for Thursday, we are going to skip that. She is debating a PET scan (I vote yes…) to get another look at the neck and see if anything else shows up.
She was most encouraged by the reality that things are, overall, not advancing quickly and, as she said, ‘we seem to have gained the benefit desired from this recent chemo…’ She seems to approach this in a ‘whack a mole’ fashion where she uses one tactic until she has another/better idea and then she ‘pounces’ with a new drug. One of the anti-hormone drugs I haven’t yet been on is called Fasladex and the Houson Dr. Osborne thought it was a bit superior to Letrozole and Anastrazole (I’ve had both) but, to date, in conjunction with the other meds I’ve needed and the trials, Fasladex wasn’t an option. Now, our Dallas Dr. Osborne told us there is a Phase 1 trial just opened at Baylor that has a component that, at least in mice (did I just type that?), works similarly to Fasladex but with even better results (at least in those poor mice). And this new drug is one of the few drugs that has shown to penetrate the blood/brain barrier that could help with my brain metastasis. She also likes this trial because, in contrast to the previous trial I was on, she can increase the dosage if I show ‘stable disease’ (doesn’t have to shrink but just can’t get worse) and don’t have ‘toxicity’ issues (their way of describing my bodies ability to tolerate it without terrible side effects). So … She has requested that I get the one open slot right now (and there are other doctors hustling for it). There are some outstanding questions about my eligibility but she has already started those conversations and hopes to get me slotted by end of the week. I would likely have a ‘detox’ period based on last dosage of anti hormone drugs and last chemo. But as long as I have signed papers and Dr. Osborne has signed them we would be considered ‘on the trial’ – even though I may have a couple of weeks before I can actually have the medicine. It is a pill and not IV chemo so that’s a plus. Though we know that pill taking isn’t one of my strengths. And the research coordinator is the same rock star and beloved nurse I had before on the last trial. She’s probably not as excited about having me as I am about having her! But that is for sure a bonus.
Dr. Osborne said I could text her back by Thursday if she hasnt yet reached out to us regarding the additional information she requested from the trial people. Hopefully, we will have some clarity by the end of the week. As a friend said today, ‘none of this extends beyond the Providence of the Lord’. Amen. I know nothing can thwart His plans and purposes (Job 42:1) and He is the One that puts me in the trial or not and He is the One that is able to make the medicine work or not and He is the One who has already numbered my days (right, Doug/Jeannie?😉) … So we wait. And, thankfully, we can rest. Our God is good.
“Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the LORD: He alone is my refuge, my place of safety; he is my God, and I trust him. For he will rescue you from every trap and protect you from deadly disease. He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection.” Psalms 91:1-4 NLT
We ended our tour de Colorado with more camping. In the car. At a rest stop. At 230am. Yep. I just thought tent-sleeping was an adventure. The party really started when we left YoungLife camp at 830p on Saturday bound for Trinidad (approximately 4 hours) but after major wreck and running the numbers we realized we would be really late getting into Trinidad so rather than Scott’s usual ‘roll into town and see what you find…’ (and trust me we have ‘found some winners’ but that doesn’t discourage him…) we decided to try to look ahead and actually make reservations (a very foreign concept to the man who considers a dinner date with Ungareans on 8.28 ‘long range strategic planning…’). I wish that I had taken a screenshot of every ‘rejection’ we got from every single city between Denver and Trinidad. Scott was like ‘surely not everything in Colorado Springs is sold out…’ so I showed him that there were four pages of hotels but all said ‘no booking available’. Except for one. The Valustay Inn (they can’t even correctly spell ‘Value’?) which had a rating of ‘poor’. But beggars are in fact poor and not choosy. And yet even the Valustay rejected me in a voicemail loop into nothingness. ‘If you know parties extension dial it now. If you need reservations please press zero…’ I press zero. And wait. And then hear ‘if you know your parties extension ….’ Same song. 14th verse. I was desperate and hopeful whoever was supposed to be answering the phone would wake up and answer the phone! No such luck. Thankfully Linc fell asleep before we hardly got off YoungLife property and missed the 13 miles of wreck (not exaggerating) and the hotel search o madness. Rather than scream or fume at Mr. No Pulse (opposites attract right?), I went to sleep. And woke up at 230a to see him pulling into a rest stop. With not a cringe or any lack of confidence. I asked if it was safe and read aloud the sign that said ‘no overnight parking’ … As he was commenting that he was just hoping for a parking spot. It was packed! I reiterated my concerns about safety and Mr Chill pointed out fact that we were surrounded by cars and other ‘overnight parkers.’ He got Lincoln out of his car seat and laid him in backseat and as he woke up he was excited to find out ‘this is just like camping again…’ All smiles. For reals. I. Am. Totally. Outnumbered. We covered him with a towel, Scott got me a blanket, we all had our camping pillows and Scott got into his sleeping bag behind the wheel. I woke up 4 hours later to an amazing sunrise and Scott looking at me with a smile, a gleam in his eye, and a fist coming out of his sleeping bag … I got a fist pump and he said ‘Don’t lie … You are excited you saved $100 on hotel and just slept in the car…’ What is wrong with this man?! And the worst part … He’s totally right! Many miles down the road I told him the biggest problem with the whole incident is that I was secretly thinking this was a ‘win’ (not that I keep score or anything…) for me and that he would learn once and for all that planning is helpful and maybe you can’t always wing it … But that I feared he was secretly calling it a win for himself because, as he says, ‘see it always works out…’ And both of us are right! And, needless to say, this will be the first my mom is hearing about her child and grandson sleeping on the side of the road…
But, if we had it to do all over again we still would have left at that crazy late hour from camp because we spent the last hour we were there hearing over 100 kids profess their trust in Christ. Amazing. And, a special gift to me, was that the Lord allowed me to befriend several kids at camp and all came to know Him as Savior over the week. One was this perky cheerleader Noelle at the pool. Another was a group of grumpy girls at ‘club’ (YoungLife ‘speak’ for ‘the talks’ each night) that weren’t respecting their leader and were rolling their eyes wanting to leave so I just scooted closer and put my arm around one of them. And, my very favorites, a group of special needs friends from Austin. During leaders meetings most of the kiddos are on their own but these friends needed a little more attention so Scott and I and some others hung out with them in the gym while their leaders went to the leaders’ meetings. And melt my heart! Linc especially loved Ty who we later learned already knew Christ but the rest of these kiddos all came to know Jesus’ love for them during the week…
Ty is the one by Lincoln and my other new friends (left to right), Marisa, Alex, and Song. I felt especially close to Marisa and she sweetly shared on Th night that she wasn’t ready to trust Him though she didn’t know why. That night I shared my story with her and Ty and we took this picture.
And these were the ‘grumpy girls’ (who later laughed and danced and made me smile so big!) and the one with the single bun next to me, Shaylah, trusted Christ.
We loved loved loved being with the Manos’ and celebrating Nick’s gifts of loving kiddos and bringing the Gospel to life.
And for all my friends and people who have volunteered with YoungLife or have kids in YoungLife or give financially to YoungLife … Well done! Wow. They. Love. Kids! And it blessed my heart. Big time!
One last little tidbit. As noted in the last post, cancer doesn’t take a vacation and ‘the real world’ was all too real today. We were back at Baylor within first 24 hours of being home … Blood work, quick chat with Dr. Osborne to feel my neck and then scans. She confirmed my concern regarding the ‘English pea’ I felt but also even more concerned with a ‘lumpy area’ (my term not hers) in the same vicinity. So, from there we were off to CT scan of chest and she added a scan of the neck.
Christina, our nurse, called at the end of the day and said the neck part of the scan hadn’t been finalized yet (should hear more in the morning) but there were ‘mixed results’ from the chest. Appears that the 2 bigger lesions/masses in my liver are a bit smaller. However, new lesions have appeared. And the small spot in my lungs seems to be a tiny bit bigger. Those results combined with the spot on my brain and possibly in my neck (lymph nodes) has Dr Osborne unsure what to do next. We may continue the chemo regimen or consider a trial or another combination of medicines. She has a hard job! Christina said Dr O wanted to go down to radiology to look at the scans and compare them to previous scans herself. Did I mention I think she has a hard job? After I texted my mom and Scott with Christina’s preliminary report , my mom replied that ‘I am stopping now to pray for wisdom for her’ and Scott commented that she has hard and weighty decisions and needs our prayers. So, I texted Dr O and Christina and told them that I knew my friends and family (that’s you guys…😉) would be praying for wisdom for her. Christina replied immediately and said to quit making her cry and right thereafter Dr Osborne said: Hugs and prayers to all of you and thank you for those prayers directed my way, very appreciated.
So, needless to say, it would bless me if you would pray for her wisdom and insight and for her to be able to rest with us in knowing the Lord is good and sovereign and doesn’t make mistakes and can always be trusted.
She has me. And yall have me. But, more importantly, He has me! And Scott. And Lincoln. And Shayla and Noelle and Marisa and Alex and Song. His children can rest in good and capable hands.