July 26, 2024
We saw Dr. B today. David is up 7 pounds from the last visit and we joked that he could stop eating for two now with surgery off the table. He always wants to be at fighting weight if surgery is a possibility. His appetite has been pretty good of late. He is drinking a good bit of natural fruit juices and gatorade along with his water. We know that isn’t the best and it adds up calorie wise, but it keeps him hydrated and relatively content having more than just water. The nurse accessed David’s port and it flushed without too much drama. He got the usual lab work-up and we jumped right in with the appointment. Dr. B was not surprised by the TB recommendation against surgery and basically said they agreed with his opinion. He had already spoken with Dr. K and advised we should proceed with further ablation and Y90. He wanted to be sure the PET scan was scheduled before any other interventional procedures. He said it was ok to proceed with mapping for the y90 but he did not want any ablation done before the PET in order to get the best scan. He said following the next procedure(s) he is anticipating starting David on Lonsurf as the next line of systematic therapy for mCRC in an attempt to manage the disease and increase survival time. He said he wanted to start a cycle of Lonsurf and then possibly during the second cycle, he may add Avastin which we spoke about in a prior visit. He explained the pill would be given in a 21-day cycle. He would take the medication on days 1-5 and then again on days 8-12. If added, the Avastin would be an IV chemo drug given three consecutive days every three weeks. The side effects are much less harsh with Lonsurf than with other chemo therapies with the most serious being a low white blood cell count. Dr. B explained that if his WBC is low, it would also indicate the drug was working. The Avastin, if added, cuts off the blood supply to the tumor and impairs healing, so any potential surgery would need to wait 6 weeks after finishing this drug. We didn’t discuss further surgery for the colon tumor at this time because the PET should tell us more about what we are dealing with. We always want to discuss surgery possibilities because David wants it out so very much. I asked Dr. B if there was a situation in which we would attempt the FULFIRINOX chemo again and he quickly said no. He said once it proves ineffective, you don’t go back to it. He said once the cells develop a tolerance to a chemo treatment, there is no reversing it. He wanted to go ahead and start the process to begin the Lonsurf even though we won’t be doing it right away. Just as with everything, it takes time to put things in motion and it would also have to come from a specialty pharmacy just like the oral chemo David took during radiation. He said of course this drug was more expensive as these things seem to go with the advanced disease and as you move into more clinical trial drugs. We will also need a patient education appointment to learn about the drug just as we had with the others. We discussed pain medication and side effects, and I asked Dr. B if David would benefit from a Palliative Care physician and he said we can always try and see. He said they had one that worked with their cancer group and within the Piedmont Healthcare System. He sent a referral, and we will see what comes of that. He said Dr. J was in an Atlanta office but did lots of telehealth visits, so he thought that would be a good option. I had already done some research, and this doctor popped up a few times and there seems to be good feedback on him. With that, we were done.
I always have other questions that I didn’t get to or just decided not to ask and sometimes leave a little aggravated. I felt this way this time but not because of anything specific. Dr. B always gives us his time without rushing us, but if you have ever been in a situation like this, there is never enough time… for anything. There is also never enough reassurance. As a matter of fact, there is hardly any in our case. It is tiresome for David, and we just want a break from bad news. Bad scans. Bad feelings. Dark clouds. We want him to live without this thing and its effects, if even for just a little while. You really don’t know what you had until your health changes like this, and once it changes, you just can’t ever go back.
Fun Fact: I take copious notes at all of these appointments. In fact, I am usually writing way more than the medical assistant is transcribing. In the beginning, this made a nurse or three make some backhanded comment as if I were there to audit their work. Now, everyone is pretty much use to it when I pull out my journal. Sometimes I ask follow-up questions to clarify and sometimes I know I can jot things down and do the research later without wasting the doctor’s time. I look back at my notes and think that surely when future peoples unearth the extensive medical chronicles of oddly just this single patient, they will marvel at how, centuries before, colon cancer was treated by putting him on “lawn surf” drugs. And funny enough, if you Google lawn surf drug, it takes you to the correct site. Hopefully, in these years to come, cancer will have gone the way of small pox and the bubonic plague. Just too bad for this world (and for us) it can’t be now.
David’s shirt today: ABIDE. (From one of his favorite movies. At least a top fiver, The Big Lebowski)
