I'm sorry I don't have good news to share with you. My tumor is not shrinking, and to be frank, I'm a little tired of being asked about it. "Has it shrunk yet?" or the simple question of "What's the latest with the tumor?" Every time I've been asked that question, I've had pretty much the same answer, and that is "no change".
I know people mean well, so I don't take it personally. I genuinely enjoy when friends reach out to see how I'm doing in general, but I've grown tired and weary of giving the same old answer or going over specifics of the latest MRI results or when my next MRI will be. Plus, as I stated in my previous posts, it takes 6 months to 2 years for the radiation to work. It does not usually start shrinking tumors immediately, at least in the case of Chordoma. These days, I'm all about hearing what's going on in other people's lives.
What I had been expecting in the latest MRI, (Dec. 30) for that reason, is that it would be the same size, "no change", although, of course, I really hope for shrinkage or deep down, total disappearance of this whole thing. Spontaneous remission. All healed. As if none of it had ever happened. I know it could happen. It's happened to others. But that's not what happened to me, at least not yet (fingers still crossed).
So what did the MRI report?
It didn't disappear. It didn't get smaller. It didn't stay the same size. It grew BIGGER.
This was the one option that I had not even glossed over in my thoughts. Before radiation treatments I was told that the worst most unlikely thing that could happen after treatment would be that it continue growing. But I was reassured that this would be an extremely rare occurrence, so I pretty much decided that it wouldn't happen to me.
So, upon seeing that it GREW in my MRI report, I was shocked, devastated and, between choking out the words to my mom that I was going to die, I was sobbing uncontrollably. Seriously, how could it have grown? I totally lost it. It never even crossed my mind that it would grow after radiation therapy.
I started to ask myself disempowering questions that only made me feel worse. Why didn't I just get surgery? Why was I so stupid? Why is this happening?
My sisters came over. We had a family reunion. It's so good to have family. I talked about the reasons why it could have grown. Was I eating the wrong things? Was it the supplements? Was it just the nature of the tumor? Was it because I stopped doing certain things? I felt so helpless. In June I went to Brazil to see a spiritual healer. In August I dropped $30,000 on an in-patient cancer clinic in Mexico. I went through 43 rounds of 77Gy doses of radiation. I spend my days and nights in meditation and prayer, along with several rounds of energy healing, coupled with a healing diet, And it's still growing.
My sister Rachel helped me realize that I shouldn't feel so stupid about choosing radiation over surgery because I could have had the surgery, then had a reoccurrence (a ~40% chance) and beat myself up over not having had radiation instead. It's hard. I'll never know what would have been the better decision.
Up until this point, I had 100% expected to get past this. I was confident this cancer experience would just be a blip on the radar that I would get through and look back on as something that helped me grow stronger. A challenge to go through just like everyone else. But this. This caused doubts to creep in. Doubts that had never been there before. Doubts about living a full life. Doubts about being able to get past this. Dark thoughts consumed me and I felt tired. Tired of fighting. Ready to give up. I told God before I went to bed that night that it would be Ok with me if I didn't wake up. I just didn't want to go through this anymore.
The next morning I spoke with a patient navigator at the Chordoma Foundation who suggested that I have my tumor sample re-tested because it's possible that I was mis-diagnosed with the type of Chordoma. There are 4 types and I was diagnosed with the conventional, slow-growing type, but since this has been more aggressive and most pathologists don't know the latest techniques on diagnosing the sub-types, she thought that perhaps I may have the more aggressive sub-type. If this is the case, it would explain a lot, but we hope that it is not the case, since this type has a much worse prognosis. She also suggested getting into contact with the UCLA surgeon and see if I'm still a candidate for surgery. So that's what I did and they said that I am a candidate for surgery, but I would be in the hospital for longer and there would be difficulty with the wound healing. They were very concerned that it was still growing and requested copies of my imaging. So I requested another test of my biopsy sample and sent off my imaging to UCLA surgeons.
That afternoon, I spoke to my radio-oncologist, the guy that treated me with the 43 rounds of radiation and had told me that it would be very, very rare for my tumor to continue growing after the radiation. However, he said that when he uploads the images on the computer, the tumor looks like it grew a tiny bit, only millimeters larger than the last one that was done six weeks prior. He said it looks "stable", like there's not enough growth to be heading for surgery. He said that the growth could be "pseudo-progression", meaning swelling or inflammation due to the treatment, not real growth. So, he suggested me getting another MRI in one month to see if that's the case.
I went into his office a few days later and he showed me the last 4-5 MRI's and it's true that there didn't seem to be much difference in the size as far as I could tell. Also, because it's an odd shape, it's hard to measure and the numbers that are reported in the written report should be taken with a grain of salt, because it simply depends on which angle they're measuring from. After seeing him and the images, I did feel better. Maybe it is pseudo-progression.
A few days later, I received an updated MRI report from Kaiser (because the previous one was compared to June, and the radiologist insisted it be compared to the latest one done in Aug. and the one done in Nov). It stated "slow, significant growth" since August. It also stated the dimensions as well for each MRI. According to the report, it seems that the tumor had been growing throughout radiation and afterwards, though slowly. But if that's the case, it also seems that I was being lied to by the radiologist who told me each week during radiation that it was the same. "No change".
So, as of now, I don't really know what's going on. It's bigger. But that could be due to pseudo-progression. Or it could be because it really is growing. Another MRI is next week which will give us (hopefully) more information. In the meantime, I'm getting the ball rolling to possibly have the surgery, or go into clinical trials.
I'm feeling a lot better mentally. I've overcome the dark thoughts and re-centered, focusing on gratitude and what I can do. I'm so grateful for my family, my friends and the somewhat normal life that I'm still able to maintain. I'm not in as much pain as I was a few weeks ago. I'm still able to go for long walks and drive short distances. In December, I tried tapering off a medication and unfortunately this made my pain much worse, so I went back on and have been doing much better since. As long as I can walk outside in the fresh outdoors, I am more than happy. I'm enjoying the time to read, journal, meditate, meet with friends, pray and write.
I tried to return to work, but my pain flared up unexpectedly a week before classes started, sadly causing me to cancel on going back to work. A few days later, however, I started to feel better as if I were able to go back to work. But I missed the boat. Perhaps next semester. It's as if my pain is my guidance system and I wasn't meant to go back to work just yet. Trying my best to stay positive and surrender to the ups and downs. This is a real-life rollercoaster.
Thank you all for your continued thoughts, prayers, positive vibes and support. I am so grateful for everyone! Thank you for reading.
