Navigating with Grace

It is with great trepidation that I am preparing to leave for Houston today.  Tomorrow will bring labs, PET scan, doctor visit and infusion. It will be a big day not for the reason of starting at 8:00 a.m. and finishing some twelve hours later, rather for learning whether or not I will be allowed to continue my trial drug. 

Last weekend saw another excruciating three days of pain that lead to me not being able to perform many of my Activities of Daily Living.  I was unable to dress myself, unable to lie down or get up unassisted or fix my own food.  In all honesty, I was unable to flush the toilet with one hand.  The pain was so great that I could not move the covers in bed nor lift a glass with one hand.  I reclined in the same spot from 5:00 a.m. until 11:00 p.m. for two days.  I was unable to watch t.v. or listen to music; it hurt to do so. I could not read, could not use my hands or arms, could not converse.  I could just be.

On the third day I contacted Dr. Wang in Houston and told him that I was considering taking a medication holiday.  His only response was to stop the Ibrutinib until I saw him Monday.  Within 72 hours of stopping the drug, I was completely relieved of all pain.  It seems that the very drug that is knocking my lymphoma down is taking my life away.

This will be the second time I have had to stop Ibrutinib; the first was when I was hospitalized for three days because of pain so great in my side that every breath I took was a true labor.  Unfortunately, stopping this drug means stopping the trial. 

I am filled with extreme anxiety that the drug that I have placed so much hope in is no longer a viable option for me.  I feel like my body is failing me, again. 

I have spent the past several days trying to come to terms with the idea that I may need to switch course and that I may be thrown into the week long chemo much quicker than anticipated.  I am not sure I am quite ready for that; although ironically, all of my chemo hats have arrived.

There is of course the chance that I can continue this trial, although I already know that a reduction in dosage is not an option and I am doubtful there are allowances for medication holidays.  It would seem that my only option therefore would be different pain management.  To some this may seem like an easy solution but for me, quality for the short prognosis of life is far more desired.  For me, that quality does not include sitting on my couch for days, weeks or months in a drugged stupor unable to move, eat, bathe or think in order to finish a trial

While I do not know if I am off the trial come tomorrow, it does seem that God may have a different journey for me to embark upon.  I would ask for your prayers of discernment as well as faith for me to continue to navigate with grace, this unknown path.

Lynda Wolters