First the facts, on Wednesday Tim & I were both pretty nervous as we knew we'd be meeting with Dr. Edenfield Thursday morning but were anxious as we still hadn't been given a hint of what the results were. Typically we at least have some sort of idea as to what to expect, good or bad. This time we knew something had changed but had no clue if it is severe, not a big deal, etc. Tim called up to the cancer center and got a call back around 3:30 from Dr. Edenfield. He told him that the nodules in his lungs have increased slightly and that an original lymph node that previously lit up but we never knew if it was cancerous or responding to injury from Tim's very invasive abdominal surgery, was slightly enlarged as well as a lymph node under the point where his bronchial tubes split. We then met with Dr. Edenfield yesterday morning to review the scans in person and to discuss next steps. It seems like the majority of his lung nodules are on the periphery of his lungs but they are becoming a little easier to spot now. I have to admit that my heart still skips a beat and I have a slight panic attack each time I see those scans and mistake a blood vessel for a tumor until Dr. Edenfield points out the actual locations which are much harder to see.
Tim has officially been pulled from the Charleston trial but for the next two weeks he won't be on any meds at all in order to give his feet and hands some time to heal before we move on to something else. He really has been to hell & back with those things. To give you an idea basically by the end of a treatment his feet are covered in blisters which heal over the off week but also peel off during their healing process leaving fresh raw pink skin. That new skin ends up developing into new blisters during the next round and the cycle perpetuates getting a little worse each time.
Next Thursday we will be going back up to Chapel Hill to meet with Dr. O'Neil again to get his opinion on what we should do next as well as just to check-in and see what he may have to offer in terms of trials or treatments. The Friday after that we will travel down to see Dr. Geils & Debbie one last time for Tim's discharge out of the trial program. A previous program Tim did with the Vectibix may be our next try but we aren't sure if he has been off of it long enough for it to begin to work again, it's the one that worked pretty successfully before and gave him the rash on his face and upper torso.
Now for what this means & how Tim & I differ in opinion on this. Tim is happy with the results, he had feared that there was more of a spread than what happened or that it had spread to his liver or any other major organs. I, on the other hand, am pretty scared for the fact that it has moved out of his lungs and, significant or not, is in locations it hasn't ever been in or hasn't been in for almost 2 years now. I think his words say it best:
"Am I happy that I have 2 insignificant lymph nodes pop up or that some of the spots are a bit larger. No, I am not, but I won a battle in the sense that it's not in another organ right now. My feet and those problems really have me down and frustrated but now that I know this wasn't the drug for me I am ready to move on and start fighting again. These little breaks I get are very important to me because they let me be normal again even if it is for only 14-20 days. If you think about it I am not normal for probably 200 days in a row and those days are when I feel like I can have fun and sit back and breathe for even just a second.
Am I happy that I will be feeling shitty for 3 days out of 14 again, hell no. But that is my life right now and it will be for the foreseeable future. I guess what I am saying is that when I say I am happy about the results, that is what I mean."
We're both still holding out hope for a miracle drug to get rid of all of it so we can start living our lives with some security instead of this roller-coaster ride we can't seem to get off of. I think out of everything that has happened and how much our lives have changed over the past (almost) 3 years now, that is what I miss most of all. As many of you know I'm super OCD and a big planner, needless to say I've had to adjust my approach to the world over the past few years (which hasn't necessarily been a bad thing all the time) but I'm really just ready to be able to plan a vacation 6 months ahead of time without the concern of whether or not it may end up falling on a chemo week.
I've texted a few friends to let them know what is going on and the most common question has been "What can we do to help?" What we really need more than anything else right now is for lots of prayer for Tim that the right drug will be used next. I think both of us (as well as our families) need some stability and, though none of us have lost hope that a cure will be found soon, stability could go a long way in giving us a better sense of security and refreshed sense of hope. So please pass Tim's name & story to others you may know, prayer groups you may be a part of or if prayer isn't your thing just send good vibes, happy thoughts or whatever it is that you do believe in Tim's way. We'd be so grateful.
Tim & Jenny