CT Scan, Labs, Urine, appointment with Pulmonary Rehab, Oncologist, Palliative Care.
I wanted to get this update in since I haven’t updated in a while. It is not for being lazy, uninterested, or lack of material to discuss; it has just been a busy month with quite a bit of travelling. Sonja and I travelled to Ashland Oregon to build my first Titanium bicycle frame, which was a full two weeks, then I had to fly back to Indianapolis for Christmas (sorry Tony B., I will catch you next time) and to see my mom and CE. Sonja and I also drove to see Erica and her lovely family over New Year’s Eve. While I do plan to update more frequently, it was nice to just focus on the things I needed to take care of.
The CT scans show that my tumors are still holding stable currently. The Affinitor (oral chemotherapy) typically works for 18 to 24 months, and I am about 6 months on the drug. Hopefully it will continue to work, but if not, we are always looking for other possibilities and new clinical trials are opening up all of the time. The trick is finding a trial that I qualify for and will actually help stabilize my type of cancer (Thymic Primary & MEN Type 1 genetic disorder). If you or someone you know is in a similar circumstance, you can find more information about possible clinical trials at http://clinicaltrials.gov.
I have been feeling pretty good for the last few months apart from the typical nausea and fatigue brought on by the chemotherapy, and just having cancer in general. Travelling to lower elevations over the last month has really opened my eyes to how much of a factor elevation is to my breathing. For those of you that don’t know, or are a new reader to this blog, I have had my chest cracked open once (a clamshell thoracotomy) and three thoracotomies through my back. After thirteen years of fighting this disease, my palliative care doctor has been the first to admit to me that surgeries of this nature will cause severe chronic pain the later you advance in life. I had spent a great deal of time researching this and I don’t know if it is because this type of surgery is usually performed on patients who are older and maybe aren’t as active in their daily lives, but it has been difficult to find any literature of the subject. With the stygma that goes along with chronic pain and the opioid crisis, it is just nice to hear a medical professional acknowledge that my pain is very real and is as severe as I describe it. So all of these factors take a toll on my breathing. When I get back to sea level where the air is more dense, my breathing improves substantially. I am not saying I want to leave Colorado, it is just something to think about if you or a loved one is experiencing breathing difficulty and lives at elevation at or above 5,000 feet.
So right on the heals of telling you how good I have been feeling, I was admitted to the hospital again last Wednesday. I had gone to Ft. Collins to meet with a guy to see how his approach to bicycle frame building differs from the process I used to build my first frame. Everything was going well and suddenly the pain and nausea came on like a storm. Very fast and extremely painful, with nausea that will not let up. I had taken off my pain patches and had not taken any of the breakthrough meds for the 1.5-hour drive to Ft. Collins. The doctors think my pain and nausea were in part, caused by withdrawal symptoms from taking off all of my pain meds. I can honestly say it was one of the most miserable experiences I have ever been through. I felt like I was going to die. After a full 24 hours of receiving IV pain meds and IV and suppository nausea meds (yes, this is actually what happens), it finally broke. My goal has been to find a way to subdue my pain without the use of opioids but stopping all at once is not a good idea. I plan to cover this topic in another post, once I have gathered all of the information, and have developed a plan. If I can get a plan together that helps even one cancer patient a road map to getting away from opioids, this blog will have been worth it! Some of the topics I want to discuss will be yoga, meditation, Tai Chi, tapering drugs such as Methadone, and of course cycling. I can’t say enough about Tom and Kourtney Danielson and CINCH Cycling! It is such a great community and Tom is a wealth of cycling knowledge and experience. If you are looking for a cycling coach, I highly recommend Tom and CINCH Cycling.
That is all I have for now. Until next time, Just Keep Moving!
KG #JUKEMO