No More Chemo!

It’s been awhile since I’ve posted. That hasn’t been intentional and there’s a lot of unfinished posts that have been added to the folder of “Drafts” where all my Work In Progress pieces go that are made up of posts that just don’t seem to flow, are only a paragraph long or even a few sentences, and the ones that are actually finished but there’s just something about them that I can’t post. Maybe they’re just a little too special.

The last month and a half we expected to be a relatively pain-free one after undergoing my second round of botox at the end of August. The idea behind botox for the treatment of migraines is that if you show signs of success after the first go, and then continue to improve, you can eventually extend the duration between treatments. My first round I had the most relief after just under a month so we were extremely hopeful for the second but I kind of shot myself in the foot after posting about the second injections. I had no improvement. If anything my headaches got slightly worse and once the effect of the botox started to ware off I even began to get a bit of clarity back that usually comes with the aftermath of big headaches but has been following me around for the better part of two months.

September was filled with a lot of phone calls to my GP. He’s the newest member on my team of doctors but has been the one most capable to pull the answers out of specialists so I don’t have to play phone tag with their receptionists. After over five weeks of a headache that left me in bed with the pain and fatigue he was on the phone trying to figure out our next game plan. Appointments were made and medications adjusted. One of my medications that I have been on from the very start, and is widely used for pain and nerve disorders, was increased to 100mg. The middle of October was going to be my busiest with 3 specialist appointments over two days. I’ve just finished those appointments, and my everyday fatigue has been doubled from having to be up at 6am to get to an 8:30am appointment at Macquarie University. For those not living in Sydney, that’s 50kms away. In Sydney traffic. Someone remind me never to book the first appointment of the day just so I don’t have to wait in the waiting rooms because my doctors are running behind time.

My appointments, depending how you look at them, have been successful. Thursday was with my neurologist and I went in unsure of if we were going to continue with the botox treatments. If we were even able to continue them because I had had such little effect after the second round and if it was worth it and what the out come would be. Thankfully she is amazing and can always ease my apprehension. We talked about the last round, the pros and cons of doing the next, what might happen, and my biggest and one of the hardest questions, what to do if it didn’t work and there were no other options?

Now, I’m the kind of person who can be pretty blunt, a lot of things don’t phase me and it takes a really heart wrenching book to get the tears going. My neurologist knows I like the facts, but she also knows how to word the hard things to soften the blow.

“We’re going to have to lower our goal of a 100% pain free Jordan, and maybe just aim for a reduction in headaches. You’re a complex case and it’s hard to tell what’s causing what at the moment”. Not something a recently turned 21 year old wants to hear, that the possibility of a life without headaches, without pain, will forever be out of her grasp.

So we went ahead with the third botox treatment, still hopeful that this one would turn out like the first. There’s no doubt that the first round helped, and I would suggest it for those that severely suffered with migraines, my case, as my neurologist said, is just extremely complex. I don’t just suffer from migraines. Mine are even atypical! There’s also the chiari, then there were years of diving and trampolining were I injured myself constantly, and the big one on the page; brain surgery! I’m a few steps behind from the beginning, but despite this, if the third round doesn’t work my neurologist does have a few ideas up her sleeve.

Then came Monday. The early rise for my neurosurgeons appointment. For those confused the difference between a neurologist and a neurosurgeon is a neurologist treats disorders of the nervous system, brain, spinal cord, nerves, muscles and pain, and a neurosurgeon is a medical doctors who specialises in performing surgical treatments of the brain or nervous system, as the name suggests.

I sat waiting for my appointment nervous and just unsure. I hadn’t seen him for almost two years. Other doctors had admired his work on the back of my neck, complimenting the scar and the neatness of it, but I just wanted to know if there was anything more he could do for my headaches! Before actually seeing my doctor I see his colleague who goes over everything that has been happening for the past two years and my current symptoms. Apparently it was a time for doctors to give me the hard hitting speeches and questions because as he was doing a neuro-exam (they literally hit your knee with something to make it twitch), he asks me “so when was the last time you were able to do something for you and that you enjoyed?”… … … cue lump in throat and sputtered answer.

Fatigue is one of my major symptoms. I’m not talking “I’m tired, I’ll take a nap and wake up feeling refreshed”, it’s constant exhaustion where you feel like you have concrete in your limbs and you’re trying to walk underwater at the same time. Sleep does nothing for you. You go to bed with your eyes stinging but somehow you still have insomnia, and you wake up feeling like a flat battery. It’s horrible, it’s debilitating, and if I could be the person who was able to run up to ten metre multiple times in a training session or even just some resemblance of that, I would do anything. 

Meeting with my surgeon we discussed the patterns of my headaches, how they changed, how they hadn’t, what happened after surgery, and what he thinks it might be. New scans were ordered to be compared to pre-surgery results, other scans were set up that just sound painful but are really just x-rays that I have to tuck my chin in and then bend my head back but my best-friend already knows that she needs to get me a straw when I have a can of fizzy drink because I physically can’t tip my head back far enough to finish it, so this should be interesting. And finally an appointment with a Professor who is internationally recognised for the clinical management of chiari malformation and syringomyelia. It’s a step in the right direction and will hopefully be the step that helps relieve some of the pressure I’m feeling in my skull.

The last appointment of the day was with trusty old Dr B. The man that always gives me a pat on the back when I leave his room. Today was no different. We also came to some conclusions that I think all my doctors have realised. My body doesn’t follow the normal route. I have this antibody, we thought it would respond to immunosuppression, but it hasn’t. The question we faced was do we keep trying or get off immune meds and see where we’re at? We all agreed the latter option was better. What’s not to say the fatigue isn’t from my headaches. Constant pain is tiring! The antibody might be just a coincidence and all the other autoimmune related symptoms might just not be able to be managed. In that regard I just don’t know. This will be my last week on low dose chemo (can I get a WOO HOO!), I will continue to taper my steroids but I have to be on constant vigilance for adrenal issues. I’m already having some problems and just have to be careful that they don’t get worse. Worst-case scenario, I’ve done permanent damage to my adrenal gland and that’s a whole other ball game I don’t want to get into.

Even though I didn’t walk away with a definite answer of “this is what we’re going to do and it will help”, if I’m being honest I don’t think I’ll ever get that, but my doctors are on the same page, they’re communicating, and I’m hoping that we get somewhere.