....and that's not just a song by Dave Matthews. I really have so much to say, so if you are even the slightest bit attention deficit, you may want to buck up on your Adderall or Ritalin in order to follow this blog post. It's a long one.
A couple of weeks after my last posting in July, I had been doing a lot of reading on the latest technologies in stereotactic radiation. It got me thinking and wondering, so I reached out to Dad's radiation oncologist, Dr. Regine, to see if any of these treatments were an option for Dad when the time came for more treatment. In Dr. Regine's amazing fashion, I received an email response within an hour, copying a group of docs on his team. Next thing I know, Dad's being scheduled for a PET scan on August 26th and the full team is reviewing his case to see if this technology is an option to pursue.
Up to this point, Dad had never had a PET scan. Only CT scans. I hadn't fully understood what the difference was between the two, but I did know that the PET scan was much more sensitive than the CT scan. After the test and the clinic team review, Dr. Regine called me. He explained that pursuing any type of future radiation would only be necessary if there were areas to treat. According to the PET scan, there were NO areas of activity. "Not a whiff. Not a hint of activity," were his words. WOW! Can you imagine the great news that was???? Such glorious news. Yes, tumor was still there, but as far as cancer activity or growth, it was "dead." Yup, we were happier than a camel on hump day!
Now, what the PET scan did show was a stricture, almost a blockage, of the area where his duodenum is, and THAT didn't surprise me. Dad had been experiencing these "attacks" of severe pain and nausea and sometimes vomiting since April. We weren't exactly sure of the cause. Thought it was due to no gall bladder or his eating habits, or even the cancer itself. Over the summer, the attacks became more frequent and intense. This stricture could very well explain those symptoms.
Dr. Regine contacted Dr. Darwin, the GI doc who had performed the ERCP and biliary stent placements last fall. Dr. Darwin called Dad to schedule an ERCP to check it out and potentially place a stent in that area.
...but Dad was just too busy....
.... Dr. Darwin was prepared to do this procedure on September 9th (remember, they just did the PET scan on August 26th. They are moving quickly on this). Well, um, that just didn't fit into Dad's social calendar. Who knew retired, old people were so busy? (Are you kidding me???? Hello control......let me have you, says Dad.) Seems there was a trip to The Greenbrier planned beginning September 10th, with a follow up trip to Tennessee to watch my nephew (and future Olympian) at his swim meet. Both great trips, yet both trips with these attacks of pain.
So, it was pushed out until September 23rd.
(ADHD folks, still with me?)
Turns out the area was almost totally blocked. Dr. Darwin said he nearly had a hard time getting the scope into the opening. He placed a stent to open the area. While in there, he also noticed an ulcer, which is commonly caused by radiation, about 10 mm in size. Dad started meds to treat the ulcer that day and within a week, had ceased to experience any of those "attacks." He started feeling fantastic.....just in time for October's CT scan and follow up with Dr. Jiang, which brings me to.......
October 8-9, 2013:
Same routine as months past. Dad's CT was on Monday with labs and appointment with med oncologist, Dr. Jiang, on Tuesday. Dad has maintained good weight. He looks good. He feels good. He's playing golf. He's mowing the yard and river lot. He and mom have been enjoying their boat in this perfect October weather. Life is good. Looking forward to another positive report.
(Sigh)
Welllllll........it seems the 10/8 CT scan showed 2 "hypodense" spots on the liver that the radiologist believed was metastasized cancer. (-insert pulling rug out from under us here-) Say wha? So I ask, "Are these the same 2 spots that have shown up before?" Dr. Jiang was very gracious and pulled up the July scan and May scan of 2013. Nothing. But in my head, I was fairly certain spots similar in description had been observed on previous scans on the liver, and mets was suspected. I was almost certain I had read that in a report somewhere along this journey. (Hold that thought in your heads, readers.....)
Dr. Jiang proceeded to talk about the next chemo and getting started, and again, Dad's social calendar is just not lending to having time for any of this cancer crap. I'm not sure why it can't take the hint and just GO AWAY. October is not a good month for starting chemo again. There's a bonfire river party one weekend, and a wedding another weekend, and Ocean City just before Halloween. Who's got time for cancer....let alone treatment? Apparently not my father. (Ain't nobody got time for that!) Dad and Dr. Jiang negotiated on November 5th being the start up date for new chemo.
Next chemo is a combo of Gemzar and Abraxane. It will be a once a week Tuesday infusion that lasts about 3 hours, in Baltimore. Dad will get 3 Tuesdays in a row, and then get a week off. Then, another 3 Tuesdays in a row. Then done.
Well, MAYBE. Remember that thought I said to hold? Pull it back in.
The night of the appointment on 10/9 with Dr. Jiang, I was sharing the events of the day with my husband. When I told him about the liver spots, he too believed we had experienced that in a previous report. He told me to check it out.
Enter HIPPA violation of the year.....Last year, during one of Dad's office visits, his complete file had been left in the exam room with us. Let's just say, with "patient permission," I fully utilized the camera feature on my iPad. So glad I have that information.
I scrolled through the reports on my iPad, and found the CT scan from October 2012. Yup. There it was. Same description of liver lesions, and at that time, it was "very suspicious" for metastatic cancer. Yet, it had never shown up on any subsequent CT scans. So was this most recent scan of liver lesions cancer? Or was it also infection, as it had been last year? Let's dig into that, shall we?
That night, 10/9, I emailed everyone on Dad's team: Drs. Alexander, Regine, Francis, Jiang. I shared my picture of that report and asked about the possibilities. The last thing I wanted was to proceed with chemo, if it weren't necessary at this point. Let's exhaust all the possibilities.
The following day, I received a call from Dr. Jiang. She and the reading radiologist from the 10/8 CT scan reviewed everything I had shared with them. They determined that it was "possible" that the liver lesions could be due to an abscess, as had occurred before. Dr. Jiang prescribed Dad a 2-week script of Cipro to clear up any infection, to rule it out, and she scheduled him for a follow up CT on October 25th.
Dad finished up his Cipro last week, had his CT scan on Friday, and then he and Mom headed to Ocean City with friends for the weekend. I was thrilled to be able to call them on their trip to deliver some good news today. I talked with Dr. Jiang this morning. In her words, "The CT scan actually is good. The liver lesion is smaller and less defined. The radiologist read as probable abscess or a collection of bile fluid."
I think I literally floated on air through the rest of my day.....seriously. This was THE best news to me in a very long time. The lesions are no longer believed to be cancer, but an infection. Hallelujah!
There is still one more issue. The CA 19-9 level, which is the pancreatic cancer tumor marker. It had increased from July to October. However, last year dad's CA 19-9 spiked in the midst of infection then too. So, I asked if Dad could get a post-Cipro treatment lab done this week to see if the levels have decreased. Without the liver lesions, and if the CA 19-9 levels have decreased since on Cipro, there may "possibly" be NO reason to start new chemo up next Tuesday. Up to this point, Dad's social agenda hasn't lent itself to be bothered with any further medical issues anyway, so let's just go with that. Shall we?
To all our friends and family who have kept those prayers coming and going over the last 13 months, THANK YOU! Your unrelenting support has been instrumental in how well Dad has navigated this stupid cancer. Please pray that new lab work shows a DECREASE in that level. Pray that stupid cancer stays inactive and shows no ability to perk up and start to show itself again.
I am so sorry this post is this long. Honestly, though, I'm hoping it will be another few months until I have reason to compose anything new. No offense to the readers. I love you all:)
