Back In the Saddle

It has become clear to me that I do not, in fact, know more than my oncologist about treating my disease and its multitude of symptoms.  While I've certainly learned a great deal over the last 24 years, I guess that doesn't make up for that whole "he's a doctor and I'm not" thing.

We had a plan for pain management - and I didn't follow it.  I didn't listen fully to what he recommended.  I decided it wasn't working and I stopped.  Now most of you know that is just not like me - usually I am a rule follower when it comes to my onc's instructions.  I can only say in my defense that the pain (clearly) made my decision-making unreliable, and that I'm fortunate that I have a doctor who is non-judgmental and compassionate even in the face of a rebellious patient.  I am a rebel no more!

After coming back from Norway (where I enjoyed the beautiful and inspiring mountains, the serene fjords and the wonderful company of Taryn, Mary and Cecelia but fought pain and fatigue most of the visit) I realized I was in an even worse state of unwellness, mostly due to my failure to believe in a solution to my pain and disease progression issues.  Daily "meltdowns" weren't helping my mental state either.  I made an appointment with the onc and truthfully - what a difference a week makes.

First - the pain issue.  After me crying and whining and basically being a big baby, my onc just smiled at me and said "I can fix this.  Let me fix this."  The way he said it, the confidence with which he said it, the surety he had that I didn't need to be in pain provided me with a calm I hadn't felt in quite a while. He laid out specifically what he wanted me to do, I have done it now for 5 days and...it is wonderful to not be in pain.  But it's more than that - it's not being in pain, and it's also not being so "loopy" that I can't work or live or enjoy a simple conversation.  The fears I had which prevented me from following directions the first time around are gone after only a few days.  I felt like I was losing all of who I was physically and mentally and it's nice to no longer feel that way.

Second - the disease issue.  The increasing pain was an indication both to my onc and to me that it was time to get back into "the chair," i.e. begin a course of traditional infusion chemotherapy in order to slow the progression and perhaps get some response (shrinkage) of current tumors.  So on Thursday I had a port placed in my chest (it's the safest way to infuse these very toxic drugs) and on Friday I had my first round of chemo.  Very little has changed since the last time I had this type of chemo (in 2008) - I spent about 3 hours in the chair and most of it was prep work (labs, pre-medication drugs, taking vitals, etc.) with the actual infusions of the 2 drugs (Navelbine and Carboplatin) taking about 45 minutes total.  I did what I usually do when I'm in the chair - did work on my laptop, ate my lunch and listened to my music.  So far, no side effects - not unexpected, as chemo is cumulative so the first few treatments should be fairly easy.  The protocol is 2 weeks on and 1 week off so time to recover at points.  To be continued...

Third - the jaw issue.  For now, the jaw will just have to be monitored as surgery is not an option while undergoing chemotherapy due to the compromised immune system.  I didn't feel I could wait for a surgery and recovery (which would have taken weeks, if not months) to start the chemotherapy.  For what it's worth - if the chemo is unsuccessful, then I wouldn't want to put myself through that kind of traumatic, invasive surgery anyhow and if it is successful... well then there's an opportunity later on to take a chemo break and do the surgery.  The jaw surgeon has me doing everything possible to avoid infection in the jaw so we will hope for the best.

My onc has me back in the saddle with respect to my physical rehabilitation.  With respect to my mental rehabilitation, there are quite a few of you who have played a part in that over the past few weeks.  Lisa, Bruce, Mary, Jodi, Kathy, Patty, Taryn, Sarita, Joe - y'all know what you've done in order to bring me back to hope, to optimism, to ME.  I am, as always, thankful for the angels in my life (yes, including Castiel haha).

Blessings and Love to All.