Houston Report

We certainly love our Dr. Osborne and today was more confirmation. And especially thankful for access to Houston’s Dr. Osborne (tried to explain this before and may be hard to track but he is huge player in breast cancer – my doctor and doctors from everywhere including the breast cancer docs at MDA go to his breast cancer conference in San Antonio every year). He knows not only the latest and greatest but his responsible for much of that research. He’s also a great teacher! So, though Scott and I looked at each other with ‘over my head’ eyes while the Osbornes talked to each other (she asked to join via conference call), we are confident  that they are smart, they are on our team, and they are creatively trying to solve this dilemma. After a quick conversation and exam he asked to leave and review some more of my file. He came back in probably :20-:30 later and his first words were ‘well, you’re a challenge…’ (He has no idea how true that statement is!) and confirmed that the fact that the trial was effective on the metastatic disease while my boob turns into a water balloon is very confusing! He also explained that the nature of inflammatory (in skin and blood vessels) makes it appear more aggressive than the pathology states (10-15% which is lower than liver and previous breast biopsies). 

I requested prayers for clarity. He answered! Both of the Osbornes agree, unfortunately, that I have to quit the trial despite the positive result in metastic disease. They also both agree on a chemo regimen as the next steps. If I understood correctly, the 2 chemo drugs are generally well tolerated and I know that at least one of them doesn’t cause hair loss. So maybe I won’t be wearing the flashing neon sign (as in a bald head) that I am a cancer patient?!

Not sure when chemo will start but since I already have a port and my Dr. Osborne is rating to go, I won’t be surprised if it is next week. I’ll keep you posted. In meantime, check out this cuteness… 

       

I am not even sure Lincoln knows we are in Houston. What’s not to love about an slumber party, Easter party, and play date while we are gone? He got the better end of this deal than Scott. But I am quite thankful for my roadtrip-loving sidekick who makes me laugh. During the appt, when we connected with Dr. Osborne via phone he called her ‘Barbara’ (it’s Cindy/Cynthia) and Scott and I were dying (well, really, it’s just me that’s dying but Scott was laughing pretty hard!😉 It’s ok to laugh. At least I think so!). Houston Osborne is very kind but kind of serious so he didn’t even flinch when I worked in ‘Cindy’ (hint hint!) and he couldn’t get out the door before we were laughing so hard at our own awkwardness and inability to recover. Scott said it was ‘emergency brake moment’ (Ticket reference?) and that’s a perfect description of what happened in my brain because as he continues on some deep thoughts wondering if this was a new cancer or the same, all Scott and I could hear was ‘Barbara Barbara Barbara Barbara…’ And Scott said all he could see was my eyes get huge and he was trying not to visualize Dr. Osborne being really ticked on the other line (which she wasn’t but made for better visual in our re enactment for ourselves). Gotta love a little cancer comedic relief. And that 3 year old. And sweet family and friends who pray and text and check on us! Big pink love to all.

Word of the Day: Weird!

I think that is the best and only way to summarize everyone’s medical reaction to what’s going on with me. I know, it’s not a very technical term, but it fits. It’s weird. Both my nurse from the clinical trial and my doctor just marvel at the scenario – and say ‘that’s weird.’ It raises so many questions about why the medicines seem to work for my lymph nodes and in my liver (at least stable in liver and regression in lymph nodes) and yet it is growing aggressively in my breast and skin. So, in the stage 4 language of “metastasis”, it is now metastasized to my bones, liver, around my lungs, lymph nodes in my chest, and now my skin. As always, today, Dr. Osborne was so thorough and patient and I feel like she sits in the quandary with us. She is humble enough to acknowledge she needs additional input from the other Dr. Osborne and yet confident enough to present a lot of options. The challenge is that all of these options are wildcards. We are in an unusual situation so there isn’t a standard protocol for these variables. We are all looking forward to getting more information from Dr. Osborne in Houston. And my sweet Dr. Osborne (Dallas) offered and suggested that she join us via conference call and wants me to call her at the end of her clinic day to debrief her. I feel so loved by that. 

I haven’t been officially kicked off of the trial yet but it’s looking that way. Dr. Osborne feel strongly that she needs to pursue another strategy to stop the spread in my breast. And it’s crazy – it is visibly changing week by week. Some of my friends and those of who are in Bible study with me can attest to that :-)  Viewings available to any females that are interested. I’m quite obsessed with the weirdness and happy to show any interested parties. Even maybe there was an older man I don’t know in the waiting room that got a sneak peek when I attempted to show Jamie and Amy today? Their heads went down in embarrassment and I think his perked up! I have no shame. But I do have one huge boob! Amy and Jamie don’t have the same obsession of  seeing my boob as I do of showing it! 

And then there was this lovable Therapet beast, Quinn, hanging out with us too.  

We will keep you updated on Dr. Osbornes input in Houston and our next course of action.

We would love prayers for the following:

- safe and fun trip to Houston (we love the shoulder to shoulder road trip and talk time!)

- Scott to be able to stay connected and caught up with family and work (not easy to spend half day today at doctor and all day Wednesday and switch gears from heavy head and heart stuff back to work which piles up)

- wisdom and clear direction from Dr. Osborne in Houston. Dr O (Dallas) is sending me with 4-5 ideas but, as in ‘word of the day: weird!’ none of them are considered standard protocol or have research data to support specific plans in this context (the uni-big boob!).

Thanks for everything. And we do mean ‘everything’. The Lord has taken care of everything we have needed. And we have confidence in His continued provision.

Mini Update.

Thought I would share with all the text I shared with family and few others last night as a quick mini update regarding results from Monday:

I talked to Dr. Osborne. The pet scan confirmed what she called “a bunch of mess” in the right breast – inflammatory breast cancer which is super aggressive (but that’s not new news) and it presents in the skin so distorts the breast considerably. She wasn’t able to compare it to the CT scan to know how recent this growth is. And she didn’t have the MRI results yet. She was also super frustrated with pathology folks at Baylor because the tissue did not get mailed as expected to the research company – who is also motivated to understand what’s going on so I feel like Novartis is also on ‘the team.’  Anyways, tissue just arrived where it needs to be. Hopefully we will have some information at least before we see Dr. Osborne in Houston next Wednesday (25th). She is willing to wait for a week or so to see what the research/pathologies says but it sounds like she is most likely gonna “cut her losses” and consider another course of action. Based on biological markers in my cancer, and there are many (she called it ‘a dirty tumor’ with all kinds of mutations) she thinks there are some viable options. She is leaning towards the chemotherapy she mentioned. I don’t know if the MRI will provide any more information or not – or what different information it provides. She also hopes to go back down to radiology and be able to compare the pet scan to the CT scan side-by-side. in short, it’s definitely not good news. Also, because she can’t do a side to side comparison she isn’t able yet to see if there are significant changes in other areas. Based on the write up from the radiologist, the lesions elsewhere sound similar. But she wants to compare them herself.

She left me a message and then I called her back with Scott on the line so he was able to hear it all too. Definitely very heavy for him. I see more and more of the burden he is caring for me and especially for Lincoln. His prayer, once again, was super sweet and just begging for grace for all of us.

Thanks for joining Scott in praying for grace for us and all the family and friends grieving with us.

More answers. More tests.

So, as I mentioned last time, Dr. Osborne was very anxious to understand if the detected cancer cells in the skin of my breast were the same cancer or different – so more biopsies the week before spring break (my boob is starting to look like Swiss cheese!) and she confirmed that it is the same cancer (ie hormone positive). It is in the skin and breast tissue as well which, in the breast cancer world, is also described as ‘inflammatory breast cancer’ because it presents in the skin. She also confirmed that it isn’t only in the skin but also in the breast tissue. Over time, different than a mass/tumor in the breast, this can greatly deform with swelling and changes to skin texture and more details that I will refrain from sharing (I know … That’s a first!). Dr. Osborne is stumped and surprised that while the trial treatment is effectively stabilizing the tumors in my liver and shrinking the masses in my lymph nodes in chest something else is growing in my breast. She even called the research lead over the study to discuss the situation and they are doing extensive tests on the tissue for additional information to, hopefully, provide clues on how to proceed. Those tests take up to 10 days so we could get some information at my appt w her today but I’m not sure. 

In addition to the tissue testing Dr. Osborne aggressively pursued insurance approval for a pet scan (crazy expensive!) and an MRI. Ironically, I got a letter this week from mammogram peeps saying nothing evident on mammogram and she is concerned that nothing was picked up in breast on CT scan (though that’s not its focus area) or on mammogram so she wants another level of visibility to see if there’s something else hiding – my non technical terms, not hers!

So, today, I will have my regular appt with her and ongoing trial check in plus a pet scan and MRI. Long day. But sweet friends from high school are coming to join us for the long day and Aunt CC will have Lincoln. I think he especially loves the doctor days:) CC will bring him up to see us and for an appt w child life specialist so would ask for prayers that she is able to connect with his buried questions and concerns. Every once in awhile we get a glimpse that he knows what’s going on – but of course in a very limited way (more of Gods grace). When we got good news from the last scan and I told him that ‘Mamas tests showed that the medicine is working…’ He replied with an excited response of ‘so you’re not gonna die!’ That wasn’t expected. I had to remind him that we are all gonna die and Mama maybe sooner than others but maybe not as soon if the medicine works. Big concepts for a little brain.

I will borrow language from my friend Kim who texted this morning with her thoughts and excerpt from book called  Bittersweet. Indeed, cancer is bitter sweet. Amidst the bitter and hard conversations with our beloved Lincoln and seeing the pain for my mom (so hard on her) or my second mom (who recently confessed that denial is easier for her than reality) and our dear friends, there is lots of sweetness. We had amazing ski trip last week with Jamies family. Scott loves the mountains and skiing and Im not so good but can celebrate that, unlike in the past, I am still friends with Scott after 3 days of skiing together (probably because I learned that the secret of skiing with your spouse may be in fact not to ski with your spouse?!) and laughed my way down the mountain with Jamie. Because Scott loves to ski and always wanted the same for Linc, we had planned to take him but maybe not this soon – yet with cancer looming Scott wanted to go so we were thrilled with the Kraus’ inviting us to go with them to Breckenridge. And Linc loved it! As Scott picked him up from ski school on 3rd day he pointed up the mountain and said ‘I want to go up the big mountain!’ So though I was terrified of having him on lift and mountain, Scott didn’t hesitate. And he loved it! Scott skied him down between his legs and then Jamie held his other hand and he was ALL SMILES!





In other super sweet news, friends offered us their backhouse during construction of our house. We went to see it last night and WOW … Truly ‘more than I could ask or imagine.’ 

Our God provides for every one of our needs in excessive and gracious ways – through many of you.

Will keep you posted on outcomes of today’s tests as we know them.

Thanks for prayers and texts and comments on blog and meals and notes and love! We are a blessed and thankful family!

You win some. You lose some.

I am pretty sure the rest of our story will be a series of good news and bad news and, over time, maybe more bad than good. Either way, I really sincerely and deeply know that God is good. He affirmed that in Bible study with friends this morning and amazingly so through friends and His creation last week (birthday trip to Cabp that was beyond amazing … another tiny teaser of how great Glory will be). Anyways, coming off the good news of scan and great time from trip, I went right back to doctor on Thursday since I had missed my Monday because of trip. Before the trip, I had noticed my right boob/breast (the latter still sounds way too clinical!) was bigger than the other and enjoyed flashing the girls on the trip to get their confirmation. Let’s just say lopsided is not the best look. And it was good for some laughs. 

I didn’t text Dr. Osborne when I first noticed about 2 weeks ago because I would ask her at Thursday appointment. She was stumped. Especially since my body seemed to be responding well to the treatment and things were getting smaller … Except, apparently, my right breast. So what started as simple follow up evolved into all day affair of seeing my surgeon, Dr. Lamont, in his office to see if he could see anything on an ultrasound. He couldn’t. But he thought part of my skin looked pink so he wanted to do a biopsy of the skin and also sent me for a mammogram because of the higher resolution of that equipment. Nothing showed up on the mammogram and the radiologist reading the report was pretty convinced it was lymphodema (common side effect of having lymph nodes removed) but confirmed beeded biopsy results to make sure. 

Biopsy results came in today and there are tumor cells in the blood vessels of the skin. We are waiting for additional pathology to determine if it is the same breast cancer or a new one. And that information is critical for treatment options. My precious doctor has already texted and called me and is ON IT. Along with her nurse. Again, I feel really well taken care of by them. When we discussing availability to get together once more information is available, she offered to meet up with us next week in Colorado while she is on vacation and we are in Breckenridge with the Kraus family. Who does that? My sweet doctor…

It would be much more fun if this update was all about fun girls trip and marveling at the whales and first attempt at surfing and amazing fun friends and flying with Rod Stewart…



Instead, back to reality. And cancer is our reality. But there is much more to our life! Our joy and hope and fun extend well beyond cancer. 

The only downside of the trip was that it left Scott with some hard ‘single dad moments’ that have been heavy on his heart as he considers that likely reality. I am sad for him. Those are heavy thoughts. Gotta run. I may or may not have stalked my surgeon through his precious wife (we have mutual friends and I just saw her at the gym yesterday) and she has given me more information from Dr. Lamont that I need to follow up on. Sometimes I think the administrative burden of doctors appointments could kill me faster than the cancer….

And apologies again for any typos or run on sentences. No time to edit. Just wanted to quickly share my news to our friends and family who are faithful to pray. For now, my requests are for peace for my family (especially mom, Scott and Linc) and clear pathology and other test results that will aid Dr. Osborne in her assessment of next steps.

With much love…

Dr. Osborne just called…

… with results from today’s CT scan and the first words out of her mouth were ‘ITS BETTER!’

Nothing has grown (that alone is HUGE since we primarily playing defense at this point!) and one lymph node in chest is smaller by 50%! There isn’t significant change in the liver tumors but they appear slightly smaller. And they are excited that the bone lesions appear to be healing as well. As Scott said/prayed, we were prepared for news either way but thankful for a God who hears our (and your!) prayers! And really crazy and cool to be most excited for Linc but to realize he has no idea all that the Lord is doing on his behalf!🙏💗

Thanks friends for praying for today’s scan results and my healing and our family and for bringing meals and caring for Lincoln and countless precious cards and gifts. Truly, ‘He is able to do abundantly above all that we ask or imagine’ through medicine and the prayers and love of His children.

Looking Back. Looking Forward…

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Please look carefully at my ID bracelet from Monday. I am not 70-something. Thank you very much for the insult, ma’am. And, from my first check in when my HSA card wouldn’t work and I was giving this ID band I should have known it wasn’t going to be my best day. I went from grumpy to grumpier as the day went on. Drawing blood continues to be a lot of poking and prodding. Clearly, my veins are grumpy and tired too. They now always give me the same precious lady, Betty, to draw my blood. After some fails by the others in previous weeks, they’ve decided I get Betty – every time. And she’s great. She rarely requires multiple pokes but recently when she had the needle in and had to start moving it around under skin to get the blood. I looked up and Scott was pale and asked to go sit down. Nice. And he’s not even the one being poked! This past Monday it didn’t take multiple pokes but it took some work to get the blood to cooperate. So from there we went to see doctor and take meds (on appointment days I have to take meds onsite) and do the EKGS.

I seriously love my research nurse, Nancy, and she is amazing at her job. However, when you are quite proud of yourself for only missing your meds ONCE since 12.29 and turn in your meds diary every week with pride of completion, would you find yourself shocked and then grumpy to hear her comment on your medicine-taking and realize you may be getting a D/F in the class instead of an A?! Yeah, I was bummed too. Nancy got her serious face on and told me she doesn’t care if I exercise (Dr. Osborne’s mantra and constant encouragement) or lose weight (would sure like to lose weight and that would cease the nagging about not gaining weight bc of crazy negative impact on
mortality associated with weight gain) but ‘just please please please eat breakfast and take your meds!’ Insert: Shock face! Then Scott jumped on the lecture bandwagon. I was none too happy with him either. Then I shared with Scott (in front of all – awkward!) that it felt more like judgement than love and B/Jamie chimes in and says ‘that’s not what I heard…’ so I was annoyed with her too! Within an hour, I was able to smile again with B but I did give her a dirty look after she agreed with Scott to which she (or maybe Nancy?) replied ‘should we leave yall two alone?’ Fun times. Cancer plus lectures in tiny exam rooms equals less-than-fun Monday. During the lecture, Angela uncharacteristically kept her mouth shut but began to start naming every easy breakfast item she could think of! It SOUNDS so easy to ‘every day wake up and eat a light breakfast and wait an hour and take your meds.’ Yeah right. I like to sleep. And while I love food I don’t love food first thing in morning. So I can’t figure out how to wake up early enough to care about food, prepare food, eat food and then have an extra hour to kill before I start the day. And the meds themselves? Apart from my regular half dozen vitamins and other meds to help manage effects of no hormones and the clinical trial drugs, I also have 6 new meds – 2 of which require refrigeration and none of which can be conveniently put in pill box because Nancy has to count my pills every time I go in. For reals. So there is my essay on ‘Why It’s So Hard to Stay Alive.’ Needless to say, I was grumpy. And THEN during all these shenanigans, Nancy is trying to do an EKG and after 2 tests gets results saying ‘enlarged left something or other…’ So as if I don’t have enough appointments I had to go back up at 4:15 for an echocardiogram. Did I mention I was grumpy? And when they called to schedule the echo the girl on the phone was SO NOT HELPFUL. And had a zillion insurance questions even though I’ve been there before. Sometimes this little brat in me what’s to scream ‘I have cancer can’t you just be nice and make this easier!’ Instead I channeled my inner Lincoln and said ‘you aren’t being very nice to me.’ Yeah, I’m gonna be 43 this week and I pulled out that big girl line. But an echocardiogram AND insurance hoopla?! Ain’t nobody got time for that! My heart was fine. I knew it would be. At least physically. It took a few days for the grumps to go away and my real heart to be better! Thankfully it’s on the mend and as the week went on I went from grumpy and tired to only tired (sans the grump) and, by the Lords grace and Providence I am actually REFRESHED as I write this.

Scott proposed we go to Linger Conference at Watermark (and later tried to claim it as his Valentines gift even though it was his idea for himself and I made the reservations … Does that sound like a good Valentines gift?!) and while I am usually 👎 for conferences … this. has. been. amazing. Well done, Shane and Shane! Our pastor/friend, JP, described this as a ‘commercial for heaven.’ I think my cheeks cramped from the smile of that thought at that moment.

One of the speakers yesterday was Tullian Tchividjian – stinkin LOVE him! And then, today, Randy Alcorn is speaking and before I got re-diagnosed (not sure how to tag the events of 12.6.15 but it’s not a recurrence – just the bad news that it had spread. Anyways, before 12.6, I had read a fiction book called ‘Deadline’ that had a great representation of heaven. So, with my new news, I realized the Lord had used that book to prepare my heart and give me a sweet and joyful longing for heaven. What a gift! And that same author was one of the speakers too.

And, as if all of that wasn’t enough, then Phil Wickham sang the most amazing song about heaven. And within an hour of that song, Shane and Shane were playing the song that had already blessed Scott and I so much (wrote about in a previous post).

One more thing…
So most of you know that Lincoln is a total GIFT! He was given when we were newlyweds and weren’t sure we wanted kiddos and were on birth control (prior to a heart change in the topic!). And, then, 8 months after he was born we learned I had breast cancer. We still often reflect on how kind our God is and how perfect His timing is. And God continues to delight us with this little man. He’s got lots of personality and very opinionated (he’s in a ‘don’t take my picture!’ phase) and doesn’t like Jesus’ hair. And, apparently, he has a secret free spirit. His parents can’t dance. And we’ve never really seen Linc dance much. However, apparently he likes to dance in public places as long as his parents aren’t around. One of our neighbors’ sisters caught this one-man-dance-show. And we have watched it over and over. This is what it looks like to be completely free of fear of man (Lord, please help me follow my son’s example!) and have 2 white parents…

http://youtu.be/r2oInLl98O8

We love and thank you all.

Happy Monday!

Well, today is a fun change of schedule for me. Instead of headed to Baylor I am headed to the gym with my little man. The protocol for the trial is set up such that for the first cycle of the drugs (four weeks), they need blood draws and EKGs every week. But, for the next six months, the schedule changes to every other week. What shall I do with all my free time?! :-) I feel really normal today getting to be with Lincoln by myself without the doctor in without school (for him) or a tight schedule. Fun for me!

I continue to fight fatigue, especially in the late afternoon, but other than that feel pretty normal and myself. I am definitely at the stage where every stomach pain or cough KEYN make me wonder if something is happening on the inside. But another benefit of the trial is additional scans. We have our first scan, since the trial started, on February 18. I am glad for that information.

And, lastly, we continue to marvel at God’s people and God’s provision. We came home from a weekend away at a friends farm, and found a hand-delivered envelope stamp “confidential.” Inside was a precious letter of encouragement and desire to bless our family with fun and a check for, as they said, date nights or Disney. The check and the letter were unsigned. They were marked all over with love and encouragement – but not a name.

The Lord continues to remind us that he will meet all of our needs. Not only funds for medical expenses and help with care for Linc but He is kind enough to even provide the funds for fun :-)

Thanks to all of you for the many ways you bless our family. Not everybody writes anonymous checks but whether it’s text or meals or surprise flowers or hugs… All of it is part of Gods plan to sustain us. And we thank you.

Finally. Biopsy results. And good news!

To remind you all, the biopsy I had a couple weeks ago was strictly for research. They wouldn’t normally do another biopsy bc primary purpose is of biopsy is to determine if cancerous or not. But, while they were poking around we wanted them to get some extra tissue because one piece of helpful information from biopsy is the growth rate.

When I had the biopsy in the hospital my growth rate was 40% and my research nurse just texted that the results are in and my growth rate is down to 20-25%! This is great news. This is an indicator of how fast the cancer cells are multiplying. So for this to divide in half is great news – especially after only 4 weeks on the medicines.

Thanks friends for praying! And for rejoicing with us in good news.

This is the sweet reminder from the Lord this morning – it rings so true in our lives and hearts.

Habakuk 3:17-19
17 Though the fig tree does not bud and there are no grapes on the vines,
though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls,
18 yet I will rejoice in the Lord, I will be joyful in God my Savior.
19 The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights.

I continue to rejoice and marvel at the Lord as my strength and joy. It ain’t me. I assure you. And Scott could confirm.

In other news, in a recent post it I wrote about my grandmother and my prayers for the Lord to extend my life or take her Home so that she doesn’t have to endure my death and burying me. Well, that very next day after that post she was in the ER. She ended up back at home and they were running some tests but haven’t been able to conclude the source of the anemia, elevated liver enzymes and stomach pain. Yesterday, she was very weak and in pain again so we are back in the hospital. She is a trooper and easy patient. I just want answers for her. And I pray that we get answers and solutions – and it is fine by me and by her if the answer is cancer and the solution is heaven. But not my will (or hers), but the Lords will be done…

Here we are – just chillin’ at Charlton…

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