Sometimes no news is good news…

… And other times, unfortunately, it means there’s no good news. And while I’m not scared to share the hard it’s just that everything has become rather hard. Including writing updates.

Yesterday, we decided to take me off the trial. I never had developed a consistent  routine that kept the nausea away though we sure did give it a go. We’ve also learned that the ‘cohort’ (trial group) ahead of me on a lower dosage doesn’t have any remaining women in the study either – not sure if that’s because of toxicity problems like I’ve had or disease progression but apparently I’m not the only one who has struggled. Dr O was conclusive and decisive yesterday and I was glad – it had been a hard decision for me to make but also a good opportunity to learn how important ‘quality of life’ is for me as a factor in our treatment plan.

But we don’t necessarily think the trial medicines were the only culprit as to why I feel so poorly – but at least one culprit we could control. We all realize more and more that while we knew (intellectually) that I was sick for the last (almost) 11 months now we are experiencing the sickness. I have pretty intense back pain. To be comfortable I pretty much rotate all night long – I have imagined I look a bit like a pig on one of those roaster spits because all through the night or my naps I just roll 90 degrees and keep rolling – my ribs hurt, then my back hurts, then my other ribs hurt and then it hurts to lay on my stomach. So I rotate again. And again. And again. And after a few rotations I am usually back to pain medication. Right now we are working on the best pain management plan. I’m  wearing a pain management patch that gives ongoing relief for 3 days at a time … And I love the ease and simplicity of it. And we are using hydrocodone to take the edge off the intensity of the pain.

And while I may feel like a pig on a spit (isn’t that what that’s called?) I no longer eat like one … Where o where has my appetite gone?!  I don’t recognize myself at meal times. Who is the blond girl who never eats and lately has declined Starbucks deliveries?! I don’t know her.

And for the first time in over 25 years of on/off struggles with body image, over/under eating, over exercising, I am losing weight but not excited about it. I can see the effects on my energy level and GI system and both need a much healthier intake – but that’s challenging when nothing sounds good. And I know I need physical activity to help offset the fatigue but the most basic of exercises I’ve loved for years and years all now seem like impossible heroics well out of my reach.

My energy level is one of the biggest concerns in my overall wellbeing and my red blood cells have been low and getting lower over the last few weeks. Dr. O expressed this week that she’s concerned that the cancer has traveled through my bones to my bone marrow so that, using her words, ‘we have a factory problem because I’m afraid the bone marrow is no longer  able to produce healthy blood cells for you…’

I shared with Scott and friends yesterday that my body is very weary though I feel sweetly sustained emotionally and spiritually. That’s not to say there aren’t tears but by Gods grace there’s not despair or fear. And the best way I’ve found to describe it as that I simply don’t recognize myself in this life – the limited appetite, limited energy, limited schedule and lots of medicine and sleep. My life has never looked anything like this before. It’s not depressing it’s just different. When I feel this weak I am quite happy with a limited schedule and naps! And also quite delighted in simple sweet moments of friends that visit (not uncommon for me to wake to evidence of their love even though I never heard them enter…) and Lincoln consistently running too hard and too fast and jumping on me (ouch!) when he gets home because he is so excited to tell me about what happened at a friends house. He knows Mama is sick but has connected the dots that that’s why he ha so many play dates. This week,  he found me in the bathroom in the middle of the night and said ‘are you trying to throw up again? … I’ll sit here and wait with you…’ If that’s not a 4yo-go-to-bed-stall-tactic-of-desperate-measures then I don’t know what is!  He, thankfully, thinks all these fun play dates are just because he has the best social calendar and best friends … And both are true!

As is this. And even more so…

2 Corinthians 4:7 But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; 8 we are afflicted in every way, but not crushed; perplexed, but not despairing; 9 persecuted, but not forsaken; struck down, but not destroyed; 10 always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. 11 For we who live are constantly being delivered over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. 12 So death works in us, but life in you. 16 Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. 17 For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, 18 while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

This is hard. And I am in pain. But my hope extends well beyond the temporal that I can see (and feel) to the promises of Jesus to sustain me in this life and welcome me into His presence and joy in the next.

Specifics for prayer, please:

– we meet with the palliative care doctor tomorrow to get, Lord willing, a better understanding of some end of life issues and resources 

– for Scott and Lincoln as the reality of life as a single dad is coming more clearly into focus as my limitations increase

– for my amazing, generous, kind, sacrificial family and friends who are grieving as they watch their daughter/friend/granddaughter struggle (I hadn’t cried through this whole entry but this one started the tears…)

– we plan to sit down with Lincoln this weekend as a family and prepare his mind and heart (as much as is possible at 4) for the hard days ahead for him and us

– a cancer-fighting plan (most likely back to chemo next) that will retard some of the cancer growth and therefore some of the pain

– pain management so that I can enjoy the people and many gifts the Lord has given to me for as long as He grants me life and breath

Thanks for your care, concern and prayers. All of you who read and pray and write and care are part of our sweet story.

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Body aches. Heart full.

I just said goodbye to Gigi and Lincoln and Scott as they leave to take Gigi to the airport. Uncle Hite and Aunt CC left earlier this morning. And the Washingtons are already home. As I said goodbye and laid alone poolside overlooking absolutely gorgeous beach I found my heart and eyes fill. I am so very blessed. So very blessed. I love these people I just went on vacation with. I love this place that Id never visited before (and though I will resist the 30A stickers I’ve found slightly obnoxious I now understand the obsession!). I loved hearing Linc tell me I’m the ‘best mom ever’ because ‘this was the funnest day ever.’ I love celebrating Gods grace and kindness to him because I am definitely not the best mom ever. In fact the 3 aunts that were here spent more time taking care of him than I did. I marvel at the ocean. How big and how wide and how deep and what a picture of the vastness of God I can’t understand.

Somehow throwing up my medicine (again yesterday but keeping it down the other days) and skipping dinners because my back hurt too badly (silly tired weary bones) and missing most morning activities because I was trying to recover from the night (terrible night sweats with temps up to 101.9) don’t really matter when you are surrounded by the glory of creation and even more so when surrounded by people you dearly love.

On the way to the beach this morning, Lincoln said ‘God is good because he lets everyone go to the beach…’ and I explained that yes God would love for everyone to see His beaches but not all can afford it (‘what does afford mean?’) so that’s all the more reason that we are thankful that He let us come (thanks to the Harrells) and be with our friends. Needless to say, this girl doesn’t take this vacation for granted. I am grateful. 

I don’t like our trip being truncated by the necessity of tomorrow’s doctor’s appointments but even while I’ve been here I’ve felt loved by our medical team.

In Bible study (that I missed on Tuesday) we were reading the rawness of feelings from Ps 77. And the antidote for despair and depression was his choosing to remember and meditate on the works of the Lord. He then makes several water references that seem to be flashbacks to Exodus 15 and the parting of the Red Sea.

I was thinking of this as I lay by the ocean yesterday and couldn’t imagine how the Israelites ran headlong toward the sea not knowing if it would open – but yet trusting the Lord to deliver them. I thought about how if the Sea had parted 200 yards before they arrived it wouldn’t require the same faith. I admire them. And I thought of how I feel like people give me too much credit for joy and peace and grace in this season but that it’s truly HIM that has opened the seas and provided a smooth path in the face of death. And I’ve seen Him provide supernatural peace and grace. And until I was willing to step all the way up to the waters edge (or He walked me to the edge in my case)  I couldn’t experience the sweetness of this ‘deliverance’ into joy that completely overwhelms me. 

I feel as ‘sick’ as I’ve ever felt – my bones are letting me know, my bowels don’t like all the pain meds, my body is fickle about the pills, the boob that was so badly inflamed seems to show signs of a recurrence and I’m on  continual pain meds (the pain patch … ooh la la!). But my heart is full. I feel loved and secure and hopeful (in Lord regardless of outcome). And, trust me, this isn’t me anymore than it was Moses that parted the Red Sea. It is me in awe of a God who knows all things and does all things and loves all people. And I am finding myself even more willing and desiring to trust Him because of the joy of watching Him do ‘abundantly above all that I could ask or imagine.’

And, lastly, can’t go to the beach without a few obligatory fun beach pics. Here are just a few of my favs… 

    
    
  
  
   

 

Better. And off to the Beach!

Jamie picked me up yesterday at 7:30 and we found Nancy in a reserved conference room with her notepad to document my every move by the minute (8:26 Zofran, 8:32 1/3 bagel…). And just in case there was ‘an incident’ she had this…. 

 It definitely crossed my mind to heave a couple of times but I didn’t! And it wasn’t fun but it’s done. And I just did it again, without her supervision, on our flight to Florida:) Maybe my body will become acquainted with these medicines but in the meantime I feel the power of your prayers to keep them down and keep the medicine in my body.

And we’re off… In case you don’t know, that’s Lincoln – and he doesn’t like to have his picture taken.

We left early this morning headed to Watercolor thanks to generous friends who offered their house. Aunt Gigi is traveling with us now and our dear friends the Washingtons are also en route. Tomorrow, Aunt CC and Uncle Hite will join us. 

I think the beach is exactly what I need – peace, beauty, fun with friends, and a reminder of how very big our God is. And near and close at the same time.

Love to all.

El Sombrero

I introduced you to my ‘career’ at Six Flags earlier this week. I started at the ‘peak’ of my career as assistant foreman but today we shall consider my humble beginnings at age 16. After I got hired there were 2 days of orientation. At the end of the second day we were asked to line up. I had no idea that these were the lines for ride assignments. And as a rather type-A firstborn that is more likely to screw up by being overly aggressive than overly passive, this was the wrong day to try a more passive and laid back approach. I was the last person in line and when it was my turn there was only one ride left – El Sombrero. For those of you who are familiar with the park, it is in Mexico and the spinning sombrero. It is far from exciting. Or adventurous. And, the team at El Sombrero (inside the park, it’s shortened name was ‘El Hat’) also worked at Casa Magnetica. Anyone else besides Pam Merryman remember this ‘ride’?! It actually wasn’t a ride but it was an ‘experience’ with a tour guide. And I was the tour guide. For an hour at a time, I took park guests through the ‘leaning house’ where balls and water ran uphill. Oh yes it did. And I could wow and dazzle the guests with these little tricks and my memorized speech. ‘Buenes Dias amigos and welcome to Casa Magnetica – the house of Don Juan…’ Are you impressed yet?! I wasn’t either. So I worked at the least preferred ride in the park and also had to do guided tours with memorized speech. Glamorous huh? The upside of Casa Magnetica was that it was shaded and air-conditioned. And at El Sombrero, at the time, there was no shade and it was sooo hot that on one of my first days I rested my arm on the rail (which was technically not allowed) and it burned my arm. So, every day for 8 hours, I alternated between Casa Magnetica and loading children on a ride that goes round and round while it goes up and down – in short, it goes nowhere. Except in circles. With lots of ups and downs. Until you get off.

And again, that serves as a great visual for our week – round and round and up and down and not sure if we are getting anywhere or not.

Yesterday, we went in to start the trial and passed all the blood work tests and the EKG. Then Scott, Mama and another 4 friends sat in a conference room with Nancy while she went line by line explaining the protocol for taking the medicine. For those of you have been with us for awhile you probably recall that pill taking isn’t my strength. So not only did Nancy emphatically review the rules (I think ‘lecture’ is a better description) she also looked around room and it was as if she was asking these ‘witnesses’ to help me ‘keep my vows.’ They nodded emphatically and enjoyed lecturing me alongside her. And then I took the pills. 

And then I threw up. It was less than :20 after I’d taken the meds and Dr. Osborne amused Nancy and I because she didn’t approve of our ‘throw up protocol.’ She wanted us to be able to tell her if the pills were thrown up or not – and I was more interested in flushing than inspecting!

Since my blood work had already shown I was dehydrated and now Id thrown up, I was given fluids and anti nausea meds along with my monthly infusion of a bone strengthener. Then I passed the EKG and was sufficiently exhausted.

We started at it again this morning. Dr O wanted me to also take anti nausea meds. So I got up around 7:15 and got my refrigerated meds and anti nausea meds. I took all and headed back to bed. Just minutes later, Scott walked over to kiss me goodbye and couldn’t get out of my way fast enough as I raced back to the bathroom. And up it came. And I don’t know exactly why or what happened but my throat was on fire so it was unpleasant on top of unpleasant. 

Again, friends rallied and took Linc to school, made his lunch, rubbed my feet so I could sleep, ran errands, folded laundry, made calls I needed to make, picked Linc up from school and brought him to see me before taking him for the night, brought anti acid meds, and checked on me. And that was just one day of all the love and care we receive. Gigi also scared me to death because I woke up mid morning to race to bathroom again and there she was – totally unexpected. In summary, my friends are absolutely amazing and a little creepy too:) I had sent friends a text saying I wasn’t feeling good and she was sad and ‘just had to check on me’ so had left school to come see me quickly. But I was sound asleep until needed to throw up again so when I saw her it scared me out of my skin! At least a little levity was interspersed with lots of love.

And, like El Sombrero, we have another round of meds tomorrow but hopefully without so many ups and downs. The drug company asked Nancy to request that I come and take the drugs, per the protocol (rules about when to eat, water consumption, sitting up, anti nausea meds….), at the clinic. So we will see if I do better tomorrow – we have some adjustments planned and are hopeful. She’s mentioned that the drug company is anxious to see if I can tolerate it or, if not, to backfill my slot. I totally understand but … Pressure! Who knew taking 4 little pills could be so stressful?!

Needless to say, lots of ups and downs over the last 36 hours. We are praying for the next 36 to be far less eventful. And would cover your prayers that I can tolerate the medicines. Or trust Lord if this is His plan to direct me to another course of action.

Much love and many thanks, amigos💗

Wednesday is D-Day. D is for Drugs. And G is for Gratitude.

We are scheduled to start in the morning. Have to pass the blood test again but hopeful with much higher numbers yesterday (supports Dr Os theory that I had bottomed out at end of cycle of last treatment). Then we get 400mg of a fancy drug and then 4 hours later an EKG to check my heart. 

I also got results yesterday from rest of scans – from the neck and bones.

As Nancy said about my neck even before the scan – “I think it’s safe to assume it’s cancer. What else would be growing in your neck?” Duh. And I sometimes appreciate the non technical explanation. The technical report describes them as ‘suspicious for cancer.’ Far less clear. 

The bone scan required me to spend a substantial amount of time researching vocabulary words. I haven’t seen Dr. Osborne for her to interpret them yet so I was left with just me and the Google.  I will include the image for you so you can appreciate the vocabulary test too?  

Did the doctors and nurses reading this just chuckle at the HIPPA foul?! 

And I had to laugh that after all the detailed language they summarize by saying, in my words, 0lots of cancer in spine and appendages.” Really?! That’s all you got?😉

And my CT scan summary was equally overwhelming and hard to interpret.  

 I am pretty sure it says ‘it’s everywhere … And growing.’ So, for this reason, we are thankful that we have access to yet another medicine since this ugly cancer has yet to be stopped by the meds we’ve tried to attack it with. 

Thanks for praying with us for blood and the trial and now for relief from this destroyer of my body. Grateful we surrender to the One who has made the body, sustains the body, and numbers my days. We are in good hands.

Oh and just in case the other images were a little heavy, there’s nothing like a new puppy to make us all smile, huh?! Even better that it’s not our new puppy but he also happily found a new home on Gillon with our family and the Fronterhouses. Linc is in love. 
 

“Yeah!!”

That was the news I got in a text from Dr. Osborne! 

And thought it was worth repeating here.

ANC was up to 1.8 (needed 1.5) and Platelets were 149 (needed 75). Super thankful.

Nancy will initiate process of ordering the meds today and we will start as soon as they are processed and here – hopefully Wednesday but maybe Thursday.

So encouraged by your many prayers and texts and now praises with our family.

❌💗

Quick numbers update…

Sorry I didn’t report on Friday but it was a looong day at the doctor. Good news … Platelets are up to 90k. Even cute nurse Nancy said ‘your prayers are working…’ when she told me. And then she requested that we also pray for ANC because they were up (to 110,000) but not enough (need 150,000). So, this morning, I head back in to check again. And would love your prayers.

We also did a CT scan of chest, pelvis and neck and, in short, there is more of everything everywhere. Nothing is visibly impeding functions and my liver and kidney numbers are still functioning well (evidenced through blood tests). I was kind of hoping for answers to why I don’t feel better but that’s not yet clear. We also had a bone scan but didn’t get the results. My novice and uneducated opinion is that my bones are weakening from the cancer and that’s the source of the back pain. I needed a lot of pain meds over the weekend and I am torn between sad about not feeling good and overwhelming gratitude (to the point of tears as Scott and I prayed on Sunday) that I have access to such good medicine. BMy heart is heavy for the suffering around the world where medical relief is unavailable. The Lord is using my pain to prompt me to pray for others.

IF we get a good set of numbers today we could possibly start the trial on Wednesday. But there’s lots more paperwork and we have to order and have the medicines shipped so many moving parts. However, all of that is dependent on good blood numbers. Would love prayers. And I can send an update later this morning – I suspect I will know something in the next couple of hours.

Thanks for partnering with us in prayer…

Flashback

When I was in high school I had an exciting 3-summer career at Six Flags. At the peak of my tenure there I was promoted to ‘assistant foreman’ of Flashback – at the time, that was the park’s newest ride. So, in short, you could say I was pretty much just a few promotions away from CEO. Or at least that’s what it sounded like if you read my resume after college. Lots of folks had fancy internships and I instead had worked at Six Flags but as my dear friend, Chris Hite, said after reading my resume ‘you make it sound like the whole park couldn’t open unless you were there!’ That pretty much sums it up. Or not.

Flashback was a roller coaster that went forward and then did the same route completely in reverse. And, sometimes, that’s what cancer treatment feels like. Full speed ahead and then all comes to a screeching halt and it seems like you are going the wrong direction…

As we’ve shared we are super excited about getting a spot in the trial and access to new medicines.  Yesterday, I had an appointment with Dr. Osborne and met with Nancy to begin the pre-trial testing (blood work, urine analysis, and EKG). We had barely been seated in the exam room  before Nancy came in and her first words were ‘your platelets are too low for the trial.’ Thankfully, that isn’t necessarily a permanent conclusion (please pray that it’s not?!) but it’s not exactly encouraging news either. They are just below the minimum threshold of 75. And there’s nothing to do (medically) to boost platelets. As more blood work results came in she also informed us that my ANC (absolute neutrophil count which are the front-line cells for fighting infections) were less than half of what they need to be – need to be 150,000 and mine are only 70,000. There is a shot I could take to increase neutrophils but they need my body to increase them on its own. And, lastly, though it doesn’t affect the trial, the blood work confirmed the anemia that I expected. I have learned to listen to my body – but don’t always like what I hear. I knew that I was very easily tired (winded from just a set of stairs) and my red blood count confirmed the fatigue I feel.

So, here we are. Again. Reminded that sometimes a few steps forward is followed by feeling like we are all of a sudden going the wrong direction. Thankfully I still have scans scheduled for tomorrow and we look forward to that information to, hopefully, help explain some back pain and internal pain and coughing. And the scans are baseline information for the trial and not factors for acceptance. We will take blood again tomorrow to see if it’s trending positively. We would appreciate your prayers for it to bounce back. Dr. O is hopeful that these are side effects from the most recent medicine which slows the cell growth – but in impeding the cancer cells the good cells also take a hit. Lord willing, they can start to rally.

And, today, I tried to go for a walk with my friend Liz that ended with my head hung over the trash can in Starbucks. I apologize to all who saw that. And sweet thanks to Jan, the manager, who couldn’t have been any more gracious – and I later learned is also a cancer survivor. It is really a gift to be met with compassion in those moments of utter humiliation. 

So I am back on the couch for my second day in a row. Thankful for such a perfect temporary place to live, for friends who rescue me from Starbucks and rub my feet, a husband with lots of compassion, and friends who pick Lincoln up from school so that he doesn’t have to witness the weary.

We would love your prayers for the blood numbers. And for rest. My body is weary today.

Much love to all.