These are the times when I sooo want to update you all with what has transpired in last couple of weeks but can barely keep it straight in my own head or remember all the details myself or remember where we left off. I am writing today on the presumption that ‘something is better than nothing’ and will try to fill in a few details from our pink world. Here are some highlights …
– On Wednesday, 10.28, we met with Dr. Osborne and all agreed it was time to surrender the trial. We had learned that I wasn’t the only one who struggled with the pills and no one ahead of me on the trial was still on the trial. In the back of Scott’s mind, he’d had a hard time surrendering the trial ‘just in case this was the silver bullet that would work if you could just keep the meds down…’ He was more aware than anyone of the daily torture and hated that for me but he was also the most hopeful for it to be effective. But, once Dr. Osborne felt like the quality of life issues were overtaking the possible benefits, he was quick to agree.
– On Friday, 10.30, we met with the palliative care team at Baylor … Wow. The place little overflowed with love and compassion and care. One nurse introduced herself, told some of her story (including personal loss of her husband and son), and described her job as ‘we are here so you can just breathe…’ and I looked up to see that tears were forming in both of our eyes. Just breathe?! Those were precious words. We spent the next hour learning about palliative care (pain management, child and family services, hospice) with Dr. Casanova listening intently to our needs and concerns. As we talked to him, I had to move seats (from chair to lay down on table) and he specifically commented on my visible level of pain. We discussed some of my other issues (appetite, fatigue, weight loss…) and he asked me to prioritize my needs so we could work on one at a time and not introduce too many variables. It was easy to choose pain management! He immediately increased my pain patch and switched me over from hydrocodone to diladid. Over that weekend, I was still in lots of pain and the days included lots of pills. But, day by day, we are making progress and I am so very encouraged! The pills still make me want lots of sleep but as the pain gets better and my body starts getting accustomed/regulated to the associated fatigue, hopefully I can be more active and, subsequently, more energetic. As it is now, I am pretty limited in how many activities I can (or can’t!) handle.
– Over that weekend (Halloween), we committed to having the hard conversation with Lincoln about the realities of our future. We had told him in many ways but not so directly as to say ‘because of cancer, Mama is most likely going to die.’ And we didn’t try to follow that up with any salve on the wound but just let those painful words hang in the room and let him ask questions (he didn’t…). It seemed to ‘go well’ though we had zero expectations – it ‘went well’ just because we had done what we felt the Lord had directed us (with input from child life specialist) to do, in the spirit of love and truth, for Lincoln’s benefit.
– The only clues we had about what was happening on the inside was his outward behavior on the night of Halloween … And it was wheel’s off! As in, worst.night.ever. As a wise friend who has parented her kiddos through some hard situations said ‘what can’t come out through words will come out in behavior.’ And I would say that his behavior communicated that he was/is angry and confused and overwhelmed. But the ‘tiger chef’ sure looked cute didn’t he….?!
His fun ended shortly after this moment and he was in bed by 6 because he lost the privilege (after yelling, screaming, spitting and blowing snot out of his nose!) of any more fun!
– In sharp contrast, the very next day, Sunday, was one of the sweetest days in the life of our family. After church, Scott crawled in the backseat of the car with Lincoln and put his arm around him. He said ‘Lincoln we had to give you some hard news yesterday…’ At this point, Mama interjected and said ‘what was the hard news?’ And Lincoln said, ‘that Mama us going to die…’ Scott picked it up so sweetly and said, ‘we know this is hard but there’s something else we need you to know … We need to know that God loves you, God can be trusted and He doesn’t make mistakes. And Daddy is going to take care of you. And Mama is going to take care of you as long as she can…’ And before Scott could finish these thoughts it was sooo cute because Lincoln started naming all of his ‘aunts’ and grandparents and our friends who would take care of him. They have given him a great deal of confidence that they will love him and take care of him. Ummm, is that not such a precious gift to all of us?!
– This past week, we began discussions about ‘what’s next?’ to get back to fighting cancer and not just manage side effects. We’ve explored 2 chemo-based options. One is a trial and the other is a standard of care drug (taxotere) that is usually used for lung cancer. Though Dr Osborne even reached out to the CEO on my behalf to request access to this trial, we don’t think I will qualify – one of my liver mets is above the maximum limit of 7cm (mine was 7.4cm as of last scan) and also because the HGB (red blood cells) need to be 9. And in recent weeks mine have been dropping below 9. They were 8.6 on Wednesday when I was at my appointment and we suggested I go back for blood work on Friday to see which direction it was going – it was going the wrong direction and down to 8.5. Given her assumption that the cancer is now in my bone marrow and my counts are dropping we are moving forward with the standard of care drug. It is administered every 3 weeks starting this Wednesday at 830a.
Those are the highlights I can come up with right now. Not sure that ‘highlights’ is the best description for anything related to cancer but, in between the small font, I want to make sure you picked up that we have made some slow but noticeable improvement in my pain management plan – and that is encouraging! There are still several other issues but it’s super encouraging to see progress with pain management and specific answers to prayers … So, again, thank you for praying! And caring. And rejoicing in good news. And concern for Lincoln. And loving our family.
I am too tired to edit so I apologize if you have to play a word game or two to interpret what I am trying to say or the chronology of events. Let me summarize: it’s been hard but He’s been good and we have hope💗