Oncology

One of the appointments that was scheduled for me while I was in the hospital was a neurooncology appointment.  I didn't understand.  I was sure I had a brain tumor, not cancer, based on what the surgeons had told me.  But we went to the neurooncology appointment figuring it would just be some sort of transition for monitoring after neurosurgery stopped wanting to see my MRIs.  When I started this blog, I thought I would want to write about all the details of my journey step-by-step, and there is value to that.  But at the moment I've had about two weeks of feeling like my old self.  Not just my pre-surgery self.  I'm talking about my old, "before I started having symptoms" self.  It feels amazing, and while I believe there is value to having a detailed record of what happened and sorting through all of the feelings I experienced along the way, I can't go back there right now.  I know that my next MRI could be bad.  Or an MRI in 3 or 5 or 10 years could be bad.  And I just need to enjoy this reprieve of feeling normal while still finishing this record.

So back in October 2017 we went to the neurooncologist, and we were shocked that he recommended chemotherapy and acted like he was giving me a gift by not recommending radiation too.  Here's the summary of what happened in the months after that.

• I was seeing a neurooncologist at OHSU because I was assigned to him after my surgery.  That doctor is the only doctor who recommended chemotherapy based on my tumor pathology and surgery success.  In medical-speak, I had a grade 2 oligodendroglioma that was IDH mutant and had 1p/19q genetic codeletions.  My neurosurgeon performed a gross total resection.  In English, I had a low grade tumor that had likely been growing for awhile and has genetic markers that increase the efficacy of chemotherapy.  The neurosurgeon removed all visible tumor.  The standard of care for patients 40 years old or younger with all of the aforementioned conditions is "watch and wait"--typically an MRI every three months for the first year.  If no tumor regrowth occurs during that time, then you have MRIs every six months.  "Watch and wait" was recommended to me by my neurosurgeon and by another neurooncologist at USC whom I saw for a second opinion in mid-November.  The doctor at OHSU recommended 6-12 months of chemotherapy (temozolomide) to kill any microscopic remaining tumor cells still in my brain.  

• In November I was two months post-surgery, still experiencing facial swelling, still battling unimaginable headaches, and not sure if I would ever get better.  I was certain at that point that I could never experience brain surgery again and the thought of having radiation (i.e., the thought of losing my hair) if my tumor started to grow again was terrifying.  When the OHSU doctor emphasized that my tumor was grade 2+ (it looked like it was approaching grade 3, aka anaplastic, aka definitely cancerous), we felt like we would regret it if I didn't do chemo.  Plus, the OHSU doctor swore up and down that temozolomide was a mild form of chemo.  So I started chemo in mid-November (5 days of taking pills at night with 23 days to recover).

• Round 1 chemo (mid-November): no sweat, I felt better than I had felt in two months and could actually lighten up on how many Tylenol and Advil pills I was taking.  Round 2 chemo (mid-December): awful, they increased the dose about 30% and the side effects were horrible (nausea, fatigue, potential skin infections).  Round 3 (mid-January): my dose was reduced back to the November dose and my start date was delayed two days because I started having multiple skin problems after Round 2.  In the third-fourth week of Round 3 I had a spate of cold sores and other skin problems similar to those I had in Round 2.  I took some antivirals and went into Round 4 of the pills. Round 4 (started February 10th): the days I was taking the chemo pills were my best, most energetic days of the whole month of February.  Prior to February 10th I was recovering from Round 3, and after I finished the pills I got really sick--incredible fatigue for several days, strep throat (I forgot how much that hurt), and a huge skin infection on my face.  I spent a good chunk of February in bed taking antibiotics.

• On February 14th (my last day taking Round 4 of pills), I went to see the OHSU neurooncologist.  Throughout the chemo process I had been searching for information about my tumor and post-operative treatment.  I didn't have a lot of success, so I asked the doctor what studies he was relying on to support prescribing chemo for me.  He got very upset, lied to me about the extent of my surgery (he said there is no such thing as a gross total resection and that I didn't have one) and what the standard of care is, and then said he would no longer treat me and stormed (I am not exaggerating here) out of the room.  Fortunately the nurse stayed and talked to me for 30+ minutes.  She said that if she were in my position, she would not do chemotherapy.  Doctors against chemo right now: 3, doctors in favor: 1.  I explained to her that I did have the logistics of my life figured out to be able to do chemo, so if possible, I would like to keep doing it instead of risking having to do chemo later.

• Then I went home and read the studies the OHSU doctor threw out during my appointment.  I learned two things: 1) I perfectly fit the description for patients who should not receive additional (chemo/radiation) treatment after surgery, and 2) the study he was using to say that all grade 2 patients should have chemotherapy did not test gross total resection patients--it explicitly tested subtotal resection patients.  This is significant because when someone has a subtotal resection you can still see the tumor on MRI images--meaning, you can see whether chemotherapy is helping, doing nothing, or hurting.  I have no visible tumor on my MRIs, so there is no way to tell whether chemotherapy is doing any good.  I stored all of this away thinking I would try to do another round of chemo in March before meeting with the only other neurooncologist in Oregon in April.

• I became fatigued after the chemo pills ended, and I needed a lot of sleep to get over it, but I expected this to a certain extent.  After the fatigue wore off, it snowed enough in Portland (meaning that we had enough snow to make a couple snowballs and the roads were completely clear) that my older son did not have preschool for a whole week.  My toddler fortunately did have preschool, bless their hearts, because I was at urgent care twice for strep throat and cellulitis and spent a couple days in bed waiting for my throat to feel better and for my face to heal.  In the midst of all that pain, I decided I was done with chemotherapy.  I could handle being sick like that if I were in a life or death situation, but instead I'm in a quality of life situation--I can do most things that I could do before surgery and I have enough energy to try to get into a routine when I'm not on chemo, so I would rather enjoy this phase of life and deal with whatever comes next, whenever it comes.  On Monday, February 26th, I called the oncology nurse and told her I'd like to stop.  She was completely supportive, and I felt a sense of relief that I haven't felt in months, maybe even a year or so.

After all that, I ended up getting strep throat a second time, and after yet another round of antibiotics, I am finally feeling WAY better.  I'm starting to teach again next week and I've been working on a project that has helped me feel so fulfilled.  When I look back at my medical history and I think about what choices I made for treating this tumor, I do get worried that I am perhaps putting myself at greater risk for a recurrence or that I will have to go through this whole process again, but I am trying to focus on enjoying each day and making the most of the happiness in front of me right now.  Life is better than it has been in a long long time, and I am so grateful for that.