My last appointment was on 08/04/2020. We did vitals, labs (bloodwork), Lanreotide injection, and a discussion with Dr. Cohn. This was not a typical appointment. It has been a while since I posted an update on here or Facebook, so I probably need to go back and get you caught up on everything.
I need to go back a few months, maybe to the start of the worst year we have all experienced in a while, enter 2020. My oncologist, Dr. Allen Cohn at the Rocky Mountain Cancer Centers suggested that I reach out to a pain management doctor to see if there might be an alternative way to deal with my chronic cancer pain. Ever since I had the clam shell thoracotomy, and subsequent thoracotomies, I have had pain in my chest that usually radiates towards my back where my surgical scars are located. Over time, this pain has become more frequent and severe. We have not found any one trigger, although fatigue and stress seem to make it worse. The doctors can not pinpoint exactly where it comes from and seem to think it may be scar tissue from the surgeries, the cancerous tumors , or maybe a combination of both. When the pain decides to “show” itself, it typically comes on very fast and with an intensity that makes me squirm in my seat and eventually makes me so sick that I start vomiting and can’t stop until I get assistance from the Emergency Department. I have medication here at home, but once it gets that bad, I usually have to have IV meds to stop the nausea and then the pain. The other issue is my tolerance for pain medication. Because I take medication at home to keep the pain from getting out of control, when it does, it takes a very large amount of IV pain meds to bring me back to normal and stop the vomiting. Because of this tolerance, my pain doctor had suggested that I look into the literature and videos he had on a spinal stimulator made by Boston Scientific. I honestly don’t know if this is the answer we were looking for, but I thought it was worth looking into. So I completed the questionnaire and the psychiatric evaluation that is required for the 7 day trial. The procedure is to install a temporary unit for 7 days to see:
- If my pain is reduced by at least 50%
- If I am able to get back to my daily activities
- If my need for pain medication is reduced
- If I’m able to relax and sleep better
If it looks like the SCS unit will accomplish these goals, they would go back in and install a permanent unit that people would not even know is there. I had the appointment set with Dr. Jonathan Berardini at MD Pain and I was excited to see if the unit would reduce some of this pain I have been living with! About a week before the procedure was to take place, I was admitted to the hospital again for severe pain in my chest and intractable vomiting. It was taking more meds than usual to get both the pain and the vomiting under control on this stay. I had gotten used to what it takes to get me back to feeling good, so it was somewhat alarming at how many rounds of IV narcotics and potent anti-nausea medication they were giving me. At this point, I was told I had tested positive for Clostridium Difficile. C-diff is a bacterium that can cause painful diarrhea and a life threatening inflammation of the colon. I wasn’t happy to hear I was positive for C-diff. again, but it did help explain why I had been so fatigued and just feeling terrible for the previous week or so. I also knew where to go to fix the C-diff. Colorado Infectious Disease Associates. Dr. Sean Pawlowski is by far, one of the best doctors I have met on this journey I began almost 12 years ago now. He is very professional, down to earth, and personable. Most importantly though, he really knows his stuff! When this issue first presented itself, he assessed the situation, pinpointed the problem, and took the necessary steps to fix it. Simple. I wish all of this journey were that simple.
I called Dr. Bernardini back for our video conference to schedule the procedure to install the 7-day trial SCS. I remember a brief pause and a look of surprise, right before he asked me if I had spoken with Dr. Cohn yet about the results of the MRI. I thought, “Uh-oh!”. I could almost see him “putting on” his professionalism. He calmly told me that the radiologist had found 2 new tumors in the thoracic region of my spine and the procedure was “off” until I spoke with Dr. Cohn and we figured out what we are dealing with, what the treatment plan would be, and how long that would take. Back up for a minute. Two…TWO new tumors? In my SPINE? WTF?
I immediately called Dr. Cohn’s office to set up an appointment to discuss the new findings in the MRI. So, here’s the results of the MRI. The existing tumors on the pancreas show no signs of activity or growth. All tumors in the thoracic region are active on a systemic level. The tumors that demand the most concern:
- The tumor next to the aortic/pulmonary window – Shows overall growth of 1.4 cm since measurement at time of last CT scan.
- The first new tumor lies between T2 and T3. Measured size is unknown.
- The second new tumor lies next to T8. Measured size is unknown.
So now the question became how do we treat my cancer from where it has progressed to now? Radiation? We tried radiation back in May of 2019 to see if it would help with the pain. It was not successful. If anything, it made me hurt worse and vomit more. No good. In addition, radiation would target the tumors specifically and individually. I felt that the cancer had begun to grow systematically, so maybe we should treat it systemically. Sonja agreed. Dr. Cohn Agreed. The Gallium scan agreed (like a PET scan, on 08/03/20). The new plan will be to continue Lanreotide injections once per month, begin a new oral chemo that will consist of two different drugs; we will call them X and Y. Drug X will be twice per day for two weeks, then add drug Y twice per day for 5 days. At the end of this cycle we get a chest, abdomen, pelvis CT scan to assess the effectiveness of the protocol to determine whether we continue with, adjust, or find a new protocol.
So now we are up-to-date. This is not exactly what I wanted to hear, but there it is. We shake off the bad news, regroup mentally, and prepare for the next chapter. I have committed myself to make some changes in my life going into this next round of treatment. Some changes are new and maybe should have been made a long time ago, some changes are old and should have been kept up with. I will talk about these changes in future updates as well as my cancer treatments and training for three stages of the Tour de France in 2021.
Thanks for reading. Until next time…Just Keep Moving!
KG