Five Months

Five months ago today, Brian went into brain surgery. By this time that night, I was finally let in to see him. They had to keep him in recovery forever because they didn't have a room for him. We were blessed with a lot of visitors that night to keep us company. I spent a lot of time just standing by my husband's bedside and just looking and looking at him. I remember a nurse telling me that I would feel relieved when I saw him. I couldn't believe that could be true with all of the news I was trying to process, but it was. When I saw him after surgery I was flooded with gratitude and relief that he made it through that hurdle okay, and that his tumor was OUT.

Today we saw our new oncologist for the first time. What a complete difference! He specializes in primary brain tumors like Brian's, and is passion for it is evidenced by his confident knowledge and compassionate demeanor. I love him even more than I detest the neuro NP, who if you can imagine is even dumber than we thought! It looks like everything she has been telling us about Brian's tumor is wrong. First of all, we were told that brain tumors come in four stages and two grades, high and low. Today we learned that this is not true of Brian's tumor. His is a mixed tumor as I have mentioned before, comprised of astrocytes and oligodendrocytes. (I am very grateful for my anatomy classes because I could follow along with some of what the doctor was talking about. At least I know what those brain cells are responsible for).

Anyway, today we found out that for mixed cell tumors like Brian's, there are no stages, just grades. It can be a grade 2 or grade 3. I piped in to ask why the NP told us that his tumor would come back stage 3 or 4 next time. He clarified that when Brian's tumor comes back, it could be exactly the same as now, the grade 3 oligoastrocytoma, or it could evolve to a glioblastoma. A glioblastoma multiforme is classified as a grade 4 astrocytoma. It can also be mixed like Brian's will be. GBM's are the Mac Daddy's of brain tumors. They are hard to treat and invasive because of vascular proliferation. This means that there are blood vessels in the tumor that are being fed by the vasculature of the brain. and feeding the blood vessels means feeding the tumor. But that is something I am not going to worry about right now. It could still come back grade 3 like it is now.

Additionally, the oncologist was concerned about Brian's pathology. Specifically the chromosomal analysis that we built our treatment plan out of. The report he had today was just the results that the hospital interpreted from Mayo Clinic's pathology report. He is going to get a copy of Mayo's actual report to see for himself. I am trying not to worry until we have the final report at our next appointment. I am a little frustrated though. Brian has been doing chemo for four months. Our new oncologist said that pending the findings of the chromosomal analysis (that I thought we already had) he may want to change up our care plan a little bit. We were saving radiation for when the cancer comes back, but we may be switching to a daily chemotherapy dose coupled with radiation in the near future. Its a lot of confusing chromosome stuff, but in simple terms, the report was confusing as to whether he has the chromosomal co-deletion we had hoped for or not. From what I understood from my research, it was an all or nothing type of thing, but his report said he had a 40% co-deletion. That was confusing to me, and confusing to the new doctor which is why we are going to look into it further.

As happy as I am about our new, very on top of things doctor who I think I really love, I was starting to feel a little bit deflated about all of the new info we got today, and frustrated that we got such incorrect information up until now. I made a concious decision not to let even more uncertainty overshadow our week. Tomorrow is our 2nd wedding anniversary and I plan on enjoying the week's festivities. I finished Brian's present and can't wait to unveil it to him.

I went straight to my new (old) job after the appointment today. I said a prayer on the way there that I would be able to stay composed and have clarity of mind. That I would be able to choose hope instead of worry. I found this quote when I got home today and it exemplifies how I feel about hope and what it means to me.

"Real hope...keeps us 'anxiously engaged' in good causes even when these appear to be losing causes on the mortal scoreboard.  Likewise, real hope is much more than wishful musing.  It stiffens, not slackens, the spiritual spine. Hope is serene, not giddy, eager without being naive, and pleasantly steady without being smug. Hope is realistic anticipation that takes the form of a determination, not only to survive adversity but, moreover, to 'endure...well' to the end.

~Neil A. Maxwell~