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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Overdue. Again.

I am so thankful for the prayers and support that I regret not giving you updates more timely. I want you to be able to thank the Lord with us as well as continue to pray. We are so thankful for both your prayers as well as your praises for our God’s kindness. I want to send some updates about Lincoln because we have had some endearing yet sad conversations as he asks questions (why? why? why?…). They are simultaneously hilarious and heartbreaking. Let’s hope my memory doesn’t fail me before I get them written down. In the meantime, I wanted you to know that Monday was another great day of good labs, gratitude for the trial, and an amazing support team of friends and medical folks. I will mooch off my friend Mel (aka Big Mama) for her highlights to share with you: thebigmamablog.com.

And add my favorite picture from the day.

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Big love and thanks from all three at the Clouse house.

Where’s that button again?!

I don’t think I appreciated the greatness of the pain pump when I was in the hospital. Dilaudid, dilaudid, where did you go, my friend?!

I was all fussy pants in my last entry and at last biopsy about pain during the biopsy and unappreciative of the fact that I had ZERO pain or discomfort afterwards. I think that’s because my body was happily doped up on Dilaudid so never felt a thing. This time, after ample warning and ‘eye to eye’ clarification with doctor about what I didn’t want to happen again, he let them numb me up good and gave enough Versed to put me to sleep this time … Ahhh. Mucho mas major! However, the biopsy hangover is a bit more intense. I am still in my pajamas and happy not to go anywhere until I get Linc at school at noon.

Thanks for praying. I felt real loved by your texts and comments and prayers. And, He answered! We got through the biopsy and have packed my tissue in a box I gave them from my nurse (it was ‘bring your own box’ for liver parts!) that is now shipped to who-knows-where for its evaluation. And, they confirmed that they got enough extra tissue for local pathology to review as well. My doctor wants lots of tests run that could possibly help us in the future even if not now.

I have intended to send a list of specific requests that are on my heart but have been delinquent in doing so. For now, I will share two that are top of mind. After I pick up Luncoln, my dear friend from college (Hite) and I will go see my grandmother. This has been my Thursday plan with Lincoln for the last 18 months or so – when we moved her into an assisted living facility. Scott and I have wanted to build a home for ourselves and for her to live with us and have been processing that decision with friends (and our finances!) for several months. The catalyst for me was to have a home large enough that she could live with us and have a comfortable space of her own. Our plan, at Christmas, was that we were gonna wrap a house key and that would be our official invitation to live with us once the house was built. Naturally, other developments on 12.6 have caused us to rethink everything. I would still very much love to have a home where she could live with us. And, I would love a a little more space to enjoy with Scott and Lincoln as well as the ability make space for others as needed (besides my grandmother). And, now, in addition to those desires, I find myself wanting to get Lincoln and Scott settled in a little less cozy (1100 sq ft) place before, as the Lord ordains my days, I go to the most glorious of all Homes prepared for me. Since Scott is a builder and it’s his passion to design and create things, this house of which I speak wouldn’t be something we would buy and move into … But something we would BUILD and move into. And our plan has been to build on our lot so this requires relocation and my idea of hell is having to move every day (just one of thousand of reasons to trust Christ as my Savior and spend eternity with Him in heaven!). With all that said, here are my 2 requests:
1. That I would outlive my 95 (96 on March 1) grandmother. She knows and trusts the Lord with her days as well but it would be very painful to have to bury your husband (April 1992), only son and my dad (February 1993), and your granddaughter.
2. That the Lord would grant us wisdom and discernment about if/when to build and if/when to bring her to live with us. In many ways this seems crazy but in more ways than crazy, it just seems right (to care for her in our home with home health support and resources as needed). Once the Lord put this idea on Scotts heart (before we moved her to assisted living) and then on mine, it has become a desire and dream I don’t want to surrender. But, if that is beyond what the Lord has planned for us (or too much for Scott), we want to hold it loosely too.

So, as I head to Grand Prairie to spend the afternoon with a 3 year old and 95 year old (thanks to help from Hite!), I would ask for your prayers for Gods grace and wisdom and kindness regarding these things that are heavy on my mind and heart.

With love and thanks (but without proofreading …),
Jen

Belated update. Biopsy tomorrow. Back to normal?

Well, friends and family, I often have great intentions of updates that don’t come to fruition. Or I go through a day thinking of all the fun little things I could share and then become too lazy. But because I am so thankful for your prayers and it is so clear that you are praying and He is answering, it is a gift to myself to keep you informed and receive the blessings of your prayers and encouragement.

Yesterday was another long day at the doctor. I take the ridiculous amount of medicine each day but it’s on Mondays that I do all the activities related to the trial – bloodwork (the results were met with more cheers and excitement from doctor and nurse because my blood counts and liver numbers still look really good!), meet with doctor to discuss/review side effects, then do an EKG and EKG and EKG and another EKG … and did I mention that I do an EKG?! I have 4-5 throughout the day according to my last dose of medicine. They are gathering data to assure the FDA that there are no heart risks associated with the medicine. Or, some Mondays, like next week, I wi spend all day with intermittent blood draws (they are evaluating how my body metabolizes the medicine over time) and more EKGs. While it’s more tedious then stressful, it’s really a joy to have access to these medicines and participate in the trial that will hopefully benefit others. Most of what I am doing is related to data collection for the trial – not data collection relative to my specific treatment or progress. And this regimen will scale back over time.

Along those lines, the study requires a follow up biopsy on my liver and that is scheduled for tomorrow. The results are entirely for research and I wouldn’t normally receive any information but our doctor has requested that they get enough tissue to send for local pathology as well (the one helpful thing we may learn is if there is a change in the growth rate). The biopsy is paid for and done as a part of my responsibility for the study – to evaluate how the combination of medicines work within the tumor and look for early indicators of effectiveness. No one gets too excited about an extra biopsy but I am sincerely thankful for those that have gone before me – and, in turn, thankful for opportunity to help those that will come after me. Albeit a painful way to help them :-) During my last biopsy, at the hospital, I was watching the needle on the screen (they use radiological imaging to guide the needle to the tumor) and, while I watched, could feel everything they did. That’s a low. Before they started, they told me they were going to numb the area locally and give me some medicine that “makes you not give a damn”. But after they started, I had to stop them and say, “for the record, I still give a damn” because I was completely coherent and I could feel everything they did. So, in the middle of the procedure, I asked them to stop and then watched on the screen as the needle came out. It was a low. Needless to say, they made some adjustments. There is something interesting about my body and pain … It’s a weird combination of seeming to endure pain pretty well but not respond as doctors expect to pain management medicine. I’ll probably be a little more vocal tomorrow about the required numbing procedures :-) The procedure is in Addison at 8:30. I would love your prayers for a pain-free, trouble-free, effective biopsy.

In addition to my belated update and biopsy tomorrow, I just wanted to share that I feel like we are returning to a sense of normal – a new normal. It’s a new normal filled with lots of love and support as well as doctors appointments – but it’s an increasingly familiar rhythm of childcare for Linc, appointments, and adjustments for all of us. We are thankful for that. As well as for the meals and help and notes and incredibly generous financial gifts that ease our burdens in every way.

Lincoln continues to be the hardest part for me and Scott. It’s very weird to see that so much is happening in his little world and yet realize that he is completely oblivious. We aren’t hiding anything and talk about doctors and cancer but he has no comprehension of what that means. I sincerely believe that much of that is Gods grace and protection for him. But, as his mother, it is hard to look at him and see such a happy little boy that is also going through a great (invisible to him) trial. Copying my friend Sterling (one of my Pink Not Grey friends who is also the mother of a 3 year old) I am trying to teach him to memorize our pastor’s words from the email I posted and his sermon: God is good, God doesn’t make mistakes, God can be trusted.

Last night, as he was getting ready for bed, he said: when I get big are you gonna let me chew gum?
Me: Sure.
Linc: when I get big are you gonna let me drive the car?
Me: Sure.
Linc: when I get big are you gonna let me drink coffee?
Me: Sure!

This conversation was random and funny until 3 seconds later – as he proceeded to the potty and I proceeded to realize that I may not be around when he is chewing gum, driving the car or drinking coffee. And that still stinks. And is heavy. And brings tears as I told Scott. So, again, I will preach to myself as I preach to him: God is good, God doesn’t make me mistakes, God can be trusted.

Follow up note:
Some of yall have asked for the link to the sermon referenced in previous posts. [Before Christmas, our pastor included our story (and a video of us) in his sermon.] The hyperlink above will take you to his sermon and our video (assuming I did that correctly). His words were sweet encouragement to us – especially his thoughts about Lincoln.

So far, really good!

Back to doctor today to continue monitoring for the trial and it was really encouraging …. Again! The clinical trial nurse confirmed that I am only patient in Dallas on the trial (after I wrote that last week I started second-guessing myself) and there are only 2 sites in all of Texas who have access to it. She also explained that the trial only opens to 6 patients at a time so she reiterated that she is still so excited that she gets to be a part of this exciting first time research to see about pairing (or tripling!? not sure the right term…) these 3 drugs. One isn’t yet on the market (CDK inhibitor but Pfizer expects to have one available this year) and there have been studies of 2 of the 3 drugs together but this is first:only study using all 3. She also came in the room after my labs and excitedly said ‘your CBC labs are perfect!’ (stands for Cancer Blood Counts and includes white cells, red cells and platelets). She went on to explain that one of the major objectives of this study is to determine dosing levels and some people have had debilitating fatigue and she expected my numbers (CBC) to plummet and expected side effects to be much worse! Jamie and Angela (besties from high school) were with me and Jamie was tearing up while Angela had chills. Angela buried one of her college best friends (from Baylor) who died from pancreatic cancer so she is especially attune and adept are loving on me and escorting to doctors. It’s been such a gift to have friends with ME while Cynthia is at her house with Lincoln (and he’s so happy watching his movie that even when I stop by after appointments with a cookie he said ‘can you please leave so I can finish my movie?’ … I think it’s safe to say he’s doing pretty well taken care of and loved on my long doctor days!) and other friends are sending dinner! Ahhh. Help is so needed and appreciated! And thanks to all of that I can nap as soon as I send this.

None of the statistics I mentioned tell us yet how effective the medicines are at treating the cancer but as long as the side effects are manageable I can continue on the treatment plan. I will have a biopsy again next week and a bone scan in 7 weeks. It still may be too early to tell the effects on cancer by then but we will wait and pray and see…

My back definitely feels better and I have tummy issues and fatigue from the medicine but neither are debilitating. Well, I may take that back … Once she started describing the fatigue possibilities I felt less crazy for being exhausted at the end of every day and my 2 hour nap yesterday!

I also had a really sweet and fun surprise on Saturday. In 1995, I started running with some folks from Arthur Andersen at the lake. They talked me into a marathon the next year and a couple more in NYC in following years. I was more hooked on the friends than the long distances and they kept me running around White Rock for many years. We’ve run many miles and lived through much more … marriages, babies, grandbabies, divorces, lost jobs, Andersen debacle, new jobs, and they are faithfully and prayerfully walking with us through another round of cancer. However, they clearly didn’t get the ‘Dr. Osborne wants me to lose weight’ memo because they showed up on Saturday morning with Starbucks, apple fritters and kolaches! That’s our standard post-run-routine and they brought the festivities to my house so I could join in. And even the Mays who have moved to Houston surprised me with a knock on the door! Then they all blessed us with sweet words of encouragement and tears (from tough-looking but really tender-hearted guys!) and a priceless gift to send us on an adventure or trip of our choosing. How stinkin sweet is that?! And since these same peeps were big financial support of my trips to Zambia they have me daydreaming and praying about returning with Scott and Lincoln. My 💗 is full! They also complained about how long these entries are and how they don’t usually make it to the end of the posts so I am putting their picture at the end to see if they actually read this far:) They have probably never seen the pictures or comment button! I love you guys – to the other side of White Rock and back!

Here are my hospital peeps from today in front of our second home at Sammons and my running buddies along with their precious gift…

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Chisum, are you pleased you made the blog?!😉