I had my first round of Rituxan (infusion) and started Ibrutinib Monday. It has been a very hectic time getting there, learning last week that my disease is also in my upper and lower GI tracts as well as now having prominent, but not yet reacting lymph nodes in my axilla, groin and upper lobes.
We also encountered a bit of an insurance snag (they initially denied the Rituxan; which is not the trial drug rather the standard drug to treat my MCL (Mantle Cell Lymphoma)). This was quickly resolved last Friday but made for a few tense hours as MD Anderson (hospital in Houston) informed me that in order to go forward without insurance approval I would have to personally guaranty the $18,000.00 infusions. I had a port placed last Friday as well and that turned out to be a wonderful option. Made the Rituxan infusion painless going in.
The infusion itself was nerve wracking to say the least but went off without a hitch and lasted only about 5 hours total instead of the potential 8 hours. Of note, the Rituxan and the Ibrutinib pills are considered chemo. I must have either chosen not to recognize that or just lived under a rock of ignorant bliss for a while, but this is chemotherapy.
Thus far, I am feeling really good. Monday and Tuesday were indescribable regarding how I felt; I guess it was like "swimming" in something foreign, heavy and unnatural; like being completely filled up with something that you needed to purge yet wanted it to stay inside you to kill the bug, all at the same time. Like nothing I have ever experienced. Wednesday my color went from a gray-blue to a green-yellow and I was fatigued (difficult to walk up a flight of stairs). Thursday was like someone flipped the switch and I had energy; all day long! And, while this may be in my head, I swear the lymph nodes in my neck are reducing in size. I called Jody and told him I was going to take a selfie of my neck and send it to my doctor for proof! :) I really had a great "feeling" day.
I am not sure how today or the rest of the days will go; I go back to Houston every Sunday this month for more "good poison" and I can only take this one step at a time. Suffice to say, yesterday was a fantastic reminder of how great it feels to feel good.
On a personal note I would like to say that I will forever be grateful to my husband for his unwavering support (even though we knock heads occasionally; he generally is right and I generally have to concede when it comes to "who knows best" regarding my current physical limitations and when I need to eat and the fact that I need to drink, "one more bottle" of water or not to overdue it and take a nap...) as well as to my family and friends. My boys are outstanding young men who have encouraged me every step of the way and gently nudged me (okay, sometimes shoved me) when necessary. My Mom for simply being my Mom, no one hugs you like your mother... and my Mom and Dad Wolters for being so involved and being such spiritual warriors for me. My friends for continually checking in (you are NOT bugging me - please continue :) ) and being available when I reach out.
And one more facet that I need to mention in my continued success thus far is my employer (and I consider that both my boss and his wife!). They have been amazing since day one. It is not easy to have only one employee and for that employee to get seriously ill,require exorbitant time off and sometimes be only working on half cylinders, but that is what my employer has faced, and they have done it with grace, kindness and generosity. I have been allowed to take care of myself by whatever means that is including a resting place in my office, smell good oils diffused through the air, time off for travel and treatment, the hiring of a wonderful young gal to help out when I am not there, and the security that I still have my job.
I am grateful and humbled by all of you. I love you all! Thank you.