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…

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.

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…

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