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?
Linc: when I get big are you gonna let me drive the car?
Linc: when I get big are you gonna let me drink coffee?
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.