… 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.