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.

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12 thoughts on “It’s getting heady in here…

  1. Aren’t we thankful God created BRILLIANT doctors who love to analyze so carefully the intricacies of your unwelcome cancer guest. I think some of that smart stuff is rubbing off on you. You talk pretty smart, girl. On another note, when is the house to be finished? I love how you shared about people bringing pieces to make it complete – like our current study in Exodus and the people “who were willing” bringing materials to complete the tabernacle. If all the materials haven’t yet been brought, there is me “who is willing”. Know it will be a beautiful place for all of you.

  2. Thank you for showing me what it means to trust Jesus in ALL situations! I’ve said it before but it’s worth Saying again…you are a modern-day Paul :). Love you! lauren

  3. Have you ever been tested for the MTHFR gene mutation? Daughter and I both got tested and both came back pos. If left alone, it can create a slew of problems, including cancer…which I have already experienced. We are working on turning off the gene so it doesn’t express itself with more health issues for us.

  4. Ok Jen, I’ve been following these updates very closely and the Lord has faithfully brought you to my mind each day to remember your specific needs. Really thankful for answered prayers on so many fronts and yet profound bewilderment over the reality you face, in general. Profound bewilderment over what David is facing as well. He survives the multi-organ transplant and 2.5 years later has to navigate the tricky waters of determining a course of action for cancer recurring in his liver. “Really?” is what I want to say to the Lord. And, “Did this slip by you when you weren’t paying attention?” Just like what I’ve felt about this 3rd type of cancer invading your body!

    But then… I read this from Psalm 9:10 “Those who know your name will trust in you, for you, Lord, have never forsaken those who seek you.” Well, I know for a fact you have been seeking the Lord, and I know for a fact we have been seeking the Lord, so I suppose whether my emotions feel it at any given moment, I need to focus on the truth of that scripture. HE HAS NEVER FORSAKEN US!!! AND, HE NEVER WILL!!!

    Ok…with that truth sinking deep into my heart, I begin to relinquish the control I so desperately want to fix this…and I am reminded my role, your role is to TRUST. We cannot eradicate the body from cancer, or make the cells respond perfectly to treatment, but we can TRUST in the one who can, who may, and who may not do exactly that. His ways and plans and purpose is not always apparent, and in fact may never be understood, but all we have to do is look at the life of Joseph to realize that behind the scenes, when nothing make sense, God is at work, and God is good, and God can be trusted.

    We pray for the medical team that has the duty of directing treatment on how best to put the breaks on these cancers that wants nothing more than to grow and mutate and hide and steal life. God is bigger than any cancer, any mutation, and any illness Satan may throw across our paths. Jen, you are a fighter and you are a beacon of hope to all who love you, pray for you and follow your journey. Thank you for being a light-bearer in a dark world. Thank you for being so transparent so we can share in your joy and cry with your tears. God is using you to build His community and to display His power. Thank you faithful friend for allowing us to walk this walk with you.

  5. praying with you sweet friend…loved the girls picture – makes me think I need to update my sunglasses or just call mine “vintage” 🙂

  6. Thank you so much for this update! I was wondering all day yesterday how things were going and am so glad to hear that they went well. Super thankful for several chemo options! 🙂 Love you!

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