Not what I wanted, but still not bad....

I went into today's appointment knowing I wasn't going to get what I want (read yesterday's post).  I'm not a big dweller in life - if there's a problem, I fix it.  If it cannot be resolved, I move on.  Unfortunately, I have a problem that I am learning might never be resolved.  

When I stated this trial four months ago, I was told that the goal was to "maintain growth."  Well I surprised everyone when after two months on treatment and my tumors began to shrink!  It was unexpected, and graciously appreciated!   We celebrated and hoped for continued success.  


I learned today that my tumors are at a standstill.  They are not growing, they are not shrinking.  My oncologist is happy with this status - this is what she expected from day one.  I on the other hand... still letting it sink in.


It's hard to think that this treatment is something I could be on for the rest of my life.  I have no where near adjusted to all of the side effects.  My doctor said that she was wanting to lower my dosage after 6 months to see if this is something I can stay on permanently and still live a decent lifestyle.  As of right now I am on the highest dosage.  Her goal is to lower the dosage enough eventually over time that the tumors continue to stay stable, and I can handle the side effects.  But then we learned today that the dosage decrease might actually happen sooner than later... 

I have my blood counts tested every time I visit the doctor.  We discovered today that my white blood counts have bottomed out.  They have dropped low enough that I am not eligible for the trial.  I'm am going off of treatment for a week in hopes to raise my white blood counts.  If by next week they are still too low, they will consider lowering the dosage for sure.  I am very disappointed that I am having to leave the trial for a week, but also very excited to take a mini vacay from my nightly pill!  Maybe I'll feel some normalcy?!  Then again, it took me almost a year after treatment the last time before I felt normal again (although that included a year of chemo, then transplant, and radiation!).

So health wise, I'm not doing so bad.  Of course I wish they would just go away, that would be amazing, but it's time to start adjusting that this is something I might be living with for much longer than I had anticipated.  It's not the end of the world, just need to adjust it into my world.


But that wasn't the only news today... My doctor also discovered a new area in my chest - it's small and has very mild activity.  She believes it is just remains from the respiratory infection I recently recovered from.  It's in a new area, not the area affected before so she does not believe it's cancer.  And considering that my cases of pneumonia have been so severe it was a toss up if the images in my chest were from infection or tumors, that she is sticking with infection on this one.  She's not worried about it, so I'm not going to even give it another thought (until my next scan to make sure it's gone!). 

The most shocking news of the day is something we have never discussed, nor did I know it was even possible!  Last month I was experiencing severe muscle pain, primarily in my chest and lower back.  I still feel it in my arms and legs, and only slightly in my chest (it doesn't hurt nearly as bad though).  The muscle pain is a side effect, but simply feels like I worked out way too hard.  It was the muscles in my chest that became so painful I was on painkillers.  Turns out it wasn't muscle pain.... my cough became so intense during my 2-3 month respiratory infection, I was coughing so hard that I fractured my own rib.  Yes, fractured a rib from COUGHING.  Now I don't feel like such a baby that I was complaining from muscle pain - I'm actually quite a hoss who still worked everyday and pushed through the pain!

So here's to a recovering rib, increasing white blood cells, and a new perspective on living with cancer.  I see the doc again next week, hopefully back on the trial!