Thursday, September 8, 2011

The "C" Word, Part Two.

Now for the long overdue continuation of my previous post, The "C" Word, Part One.
My mom continued to recuperate through the weekend. She was able to get moved from the ICU on Sunday into a regular room. Then she was released to go home on Monday. Considering that her skull had been cut into and her brain was operated on, I felt that was a remarkably fast recovery time!
She had 8 new prescriptions to take home. I went to my parents house to help them figure out the doses and times for each medication.
Then I started a "meal calendar" so that they wouldn't have to cook for themselves for at least 2 weeks. Friends, family, and even strangers helped with this. We were so touched by the outpouring of love and generosity for our family! And it made things so much easier on my mom and dad, who were BOTH in a state of rehabilitation.
Easter was about a week later. We had a quiet family gathering at their house for Easter. The little ones had an egg hunt, and my mom even went out and helped them with it.
About two weeks after the surgery, they went in for what they thought was a only a post-op appointment. But, as it turned out... they had the results of the pathology report ready for them that day as well.
The results: Primary CNS Lymphoma. While we were hoping and praying that the results would indicate some weird viral or bacterial infection... they were not. The mass in her brain had been, in fact, malignant.
CNS Lymphoma is "Central Nervous System" Lymphoma. Lymphoma is a blood cancer.
The next few weeks were a blur. Meal deliveries, Dr. appointments, lab tests... Mom had to have several Oncology appointments, as well as lab work, and eye exam, a PET scan, MRI's, and  a Spinal Tap. These were all to try and figure out how far along the disease was. And where it started. I went to a few of these appointments with my parents, and my grandma went to some with them as well.
With CNS Lymphoma, it stays isolated to the nervous system, i.e. Brain, Spine, Eyes.  All of the testing seemed to indicate that there was no Lymphoma in her spine or eyes. It must have started in her brain and not gone any further. (Though it is a type of cancer, and though it did originate in her brain... it is NOT the same as "Brain Cancer", as this is Lymphoma and they are different.)
It came to the point where treatment would be discussed. Her oncologist planned to do some intense, in-patient, chemotherapy for at least 6 months. (Two weeks in between each treatment.) The next step, if the chemo was not effective, was to be radiation therapy. This scared my mom. A lot.
I urged her to get a 2nd opinion. I explained to her and my dad how serious her disease was, and that just because they got a 2nd opinion didn't mean they had to stay at that place for treatment. They agreed to get one.
In the United States, there are only 41 accredited "Comprehensive Cancer Center's". We live in Southern California, and are withing 2-3 hours of THREE of the 41. Pretty great, if you ask me! I shared the 3 with her, and asked her to pick one. She chose UCLA's Jonsson Comprehensive Cancer Center. Honestly, and of those places would have been a great choice. But this one is full of cutting edge technology and has many Dr's in the center that were placed on the Top 10 Dr's in America.
The new treatment plan? Several rounds of intense, in-patient chemotherapy. Followed by a Stem Cell transplant (using her own stem cells).  Yes, cutting edge indeed!
Fast forward to now. It has been one heck of a steep climb for my mom. Those week long hospital stays were not easy on her. (although, physically, she tolerated them incredibly well. She has had no hair loss, and has actually gained weight!) The emotional aspect of having to deal with her own morality has not been easy on her, nor any of the family. But right now she is currently "In Remission". She is on her 3rd appeal with the insurance company, as they don't want to cover her Stem Cell transplant unless she has a recurrence. I guess they don't understand that the Stem Cell Transplant could PREVENT the recurrence.
She did get some advocacy help from the Leukemia and Lymphoma Society that will *hopefully* help her with this third appeal.
At this moment, she is in the hospital have a round of "maintenance chemotherapy"... trying to keep her in remission, since her Stem Cell Transplant has been put off during this ridiculous appeal process.
But for now, she is strong and healthy. And I count my blessings for that.