(originally posted on my CaringBridge page on 1/10/13)
However long the night, the dawn will break.
So I’ll lay out the first news of the day: I am not receiving the clinical trial drug that would have worked in synergy with the standard chemo. Yes I know… deep sigh. Cringe. Let’s just say, if I was a gal who actually believed in luck (which I’m not) … it would be tough waking up each day without getting struck by lightning through my bedroom window!
Though we have been actively hoping and praying that I would hear different news today, I honestly have peace right now.
After the biopsy, as John and I made our way to meet with the oncologist and research team (to learn my status following computer randomization), I looked at him and said … the truth is, I tell myself I have been praying for God’s will be done, but my prayers and desire on this issue have really only been to GET the drug. I need and really want His will to be done in this. Believing means knowing that His way is best — period. So these results really don’t matter, in His grand scheme. So we both individually prayed for this the entire time we waited.
The oncologist called us in and we were still waiting on the research nurse to join us with results. We talked about what to expect with my first infusion while she thoroughly examined me. I’m thrilled to have her on my team. The research nurse came in and after introductions, I couldn’t help myself. “So?… was I picked in the randomization?” She opened the chart (already knowing, of course) and almost sympathetically said, “No, you are in ‘Arm B’ of the trial, a participant in the smaller percent who DON’T get the drug.” I paused, smiled and said, okay, we knew that was an obvious possibility.
The oncologist looked at me and assured me that this news does not negate the fact that I will be getting the best, most aggressive treatment…further reminding me that this trial may prove to not be effective at all. I nodded, grateful for her encouragement and then glanced over at John’s face. When you’ve been best friends with someone as long as we have (almost 19 years), you can’t help but feel what the other is feeling. He hurt for me. I then glanced again at the research nurse … silent and sympathetic, and cried for a minute. Honestly, it was just that … a moment of releasing the coveted desire I carried for the last week and then just like that, relaxed, feeling a real peace that passes all understanding. It wasn’t meant to be for me.
The oncologist left, as we continued chemo discussion with the nurse. We then learned the bad news of the day—the trial stipulations did not clearly lay out the hidden fact that the next biopsy needed to be scheduled within 48 hours! There I sat, ice in my bra, still black and yellow from the biopsy on the 21st of Dec. Now further swollen and achy, they’re telling me I need to do this again in 2 days. Let’s just say John in “protective-mode” was NOT a happy camper. This really wasn’t clearly discussed nor written anywhere in the paperwork I signed, so we expressed our concern and overall disappointment with the added inconvenience and general misery this would bring. After all, Thursday’s trial conversation had instead confirmed 2 weeks after my first infusion, the obligated biopsy needed to be done.
Anyway, John needed to chill out and I said let’s just deal with it and move on. The nurse felt bad and wanted to further investigate. Needless to say, while grabbing breakfast in the cafeteria, my oncologist frantically found us and said she was so upset at the vague details of the trial, that she formally complained, and pushed the biopsy off until next week (giving me a little extra time to heal). Yay.
I also LOVE my chemo nurse. We really connected! He’s great … fun, yet serious and filled with knowledge and answers. He will hopefully be my guy for the duration. John and I were happy with his attentiveness and compassion.
I pretty much avoided thinking about chemo until he hung the bag and was ready to start. I already had a double dose of Benadryl via IV (which had a “burn-a- hole in my vein” feeling, apparently a normal sensation for many). This was given in case I was one of the “anaphylactic shock” cases (lightning striking).
When the taxol was ready, I got an overwhelming feeling of anxiety. I didn’t anticipate that reaction at all. I think for a brief moment in Benadryl groggyville, I became that “gal believing in luck” and given the recent life events, assumed I would be the rare one to code on this drug.
Ahhhh, but no. I am not that gal and the treatment went well, as I caught a long overdue nap with a lovely heated blanket. It did its thing, and the nurse gave me a thumbs up and wink at how well I did.
Treatment one: Done.