Let me preface this by saying that this blog post may not be as uplifting as others I’ve written, but it is not intended to be negative in any way. I hope that my story and my experiences, both good and bad, might be able to help someone somewhere. I’m sure as hell not complaining, especially because I do truly realize how lucky I am to have made it this far. I know some never do. I’m just being real, honest, and authentic. I’m not sugar coating anything, but I’m also not looking for sympathy. As always, I want to speak the truth and I am simply a patient telling you about my own sickness and health. With that being said, this is also in no way shape or form any type of medical advice.
As I write this, I’m sitting in a hotel room- with my parents fast asleep in the other room. It’s past 1am, but I can’t sleep. This is my 17th trip to a world class hospital (not like I’m counting or anything…). I’ve been coming here for 4 1/2 years, although many of my visits have wound up leading to more questions than answers. My dad (and mom) have been coming here for 8 years- mainly for my dad’s many forms of cancer treatment and ongoing surgeries.
Every time I come here for my own health issues, I swear to myself that it’s going to be the last time- at least for a long time. Turns out, life has other plans for me. What’s perplexing is that I’ve been feeling pretty great and I’m now FINALLY living a full and functional life again. I was even recently featured in a Reader’s Digest article beautifully illustrating how far I’ve made it in my journey back to health. I hope this post does not discourage anyone. I’m still a fighter, and I’m tough as nails. I’ll be just fine, so don’t you worry, and don’t you ever doubt that you are capable of reaching remission. The human body is resilient beyond anything I could have ever imagined, and I think it pales in comparison to that of the human spirit.
On the flip side, it’s terrifying what can be going on inside your body without your knowledge, and especially with most of your prior symptoms being almost completely resolved. You finally catch your breath, start to see the light at the end of the tunnel, and the constant uncertainty of your life starts to fade away. You can plan things again…big things- like trips to foreign countries and music festivals. You are finally actively participating in everything you passionately loved before you got sick. You aren’t afraid of making plans anymore. You know you won’t have to cancel for the billionth time because you’re too sick- ultimately letting the people you love down, yet again.
You think you’re in the clear and have reached this epic achievement of remission…something that seemed like such a distant, foreign, and ridiculous dream to you for so many years, but even so, you clung to whatever hope you could find. You think you can go on with your (now) merry life- stronger, smarter, wiser, and more compassionately than ever. You’re determined to do incredible things with your second chance at life. But then, just like that, you blink and everything changes. You don’t see it coming one bit, and it hurts so much more this time around because you have tasted happiness and health and life (as you always thought it should be) again.
For those of you who don’t already know (I haven’t told many people yet), I wound up in the ER a few weeks ago… “Sometimes you wanna go where everybody knows your name”…not really, because there were some new nurses I hadn’t met before, haha 😉 I was having severe abdominal pain and feared it might be my appendix. It takes a lot to get me to go to the ER after everything I’ve been through, but I had a gut feeling (pun intended) that this was serious.
After a bunch of labs and other testing, and hours of waiting into the wee hours of the morning (thanks, daddy!), they discovered another giant mass where the last tumor had been. The ER doctor said they were unable to decipher what this mass was from a CT scan, and that I would need an MRI ASAP. He speculated that it was either a ton of scar tissue (unlikely, but that would have been my strong preference) or another tumor (benign and filled with blood vessels).
The MRI confirmed it was another tumor, so here I sit. Just waiting. I think waiting is one of the worst parts of any illness. Waiting and not knowing what your future holds. Watching the clock, trying to keep busy, and not think about one of the only things you can’t get out of your mind, but ultimately can’t control, either.
As I’ve waited these past few weeks, I’ve been researching like crazy and talking to every doctor and scientist I can possibly find to see if they have any insight as to why this is happening again. It’s rare for hemangiomas to grow back and also grow this large, but I guess I’m one of those lucky ones (detect sarcasm). Oddly, I had 3 very small hemangiomas on the left lobe of the liver when they resected the first tumor in 2013. I had a follow up CT scan and began 2014 healing from the surgery well, with no change in the other 3 hemangiomas.
Fast forward to today, and the 3 small hemangiomas have all since completely disappeared, and I’m left with another giant tumor on the right lobe. Now, I’m no scientist or doctor, but I’ve been studying night and day since my Lyme diagnosis because my life quite literally has depended on me learning everything I possibly can about Lyme Disease and co-infections, or MSIDS (Multiple Systemic Infectious Disease Syndrome).
I truly believe there is a cause to everything, but Western/Allopathic Medicine is not about healing the patient by finding and addressing the root cause of disease. It’s about treating the symptoms. Essentially, it’s putting a band-aid on whatever is going wrong (sorry if this offends any of you in the healthcare field) by treating with pharmaceutical drugs (which often have side effects worse than the symptoms they’re prescribed to treat), surgeries, and other procedures while the body continues to deteriorate. That has been my experience, at least. But I refuse to accept that. I’ve come so very far with natural treatments. And there is of course, a time and place in which Allopathic Medicine is completely necessary- I just don’t think it’s as often as we’re lead to believe.
Anyhow, I’ve been forced to learn as much as I can about a co-infection to Lyme Disease called Bartonella. It’s one of the most common co-infections, but even most Lyme specialists know very little about this pathogen. I’ve come to find that veterinarians actually know the most, but there is still very little research that has been done on this disease.
Fun fact: Bartonella is known to CAUSE vascular tumors. Yes, you read that right. Hang on while I go beat my head against the wall for a few minutes… I have been diagnosed with Bartonella by more than a few specialists. I still have some minor symptoms of Bartonella, but thought it had been pretty much resolved. I never understood what a stealth pathogen it was, or how easily it could hide in the body for long periods of time.
Before my first surgery, I begged and pleaded with every single hospital I consulted to do additional pathology testing, in addition to just cancer. Not one of them would agree to do it, nor would they agree to send a tissue sample to a lab that would. I begged them after, too, and even sent a hand written letter to the hospital, but they would not comply with my wishes. Hmm…why would they deny testing that I requested, especially if I was willing to pay whatever they wanted to have it done?? So now come the real questions: Could Bartonella be causing these recurring tumors? Could this have been prevented from happening a second time if the proper pathology testing had been done the first time, and I subsequently treated the Bartonella effectively? I had been so focused on treating Lyme, and overall just not dying.
My theory is: these tumors are due to an underlying Bartonella infection that was never properly treated. The 3 small hemangiomas disappeared because they were caused by an opportunistic infection (i.e. Bartonella) that saw a weakened site in my body (a large wound healing from my surgery) and migrated to that site so that it could multiply more easily. It makes sense, and many doctors and specialists who are familiar with Bartonella agree my theory could be correct, but they’ll probably try sending me to the loony bin if I mention that to a mainstream doctor.
So do I go through another extremely invasive open surgery? Do I wait and hope the tumor doesn’t rupture, and try to aggressively treat the Bartonella to see if I can somehow get the tumor to shrink? Do I have the surgery and then treat afterwards, in the hopes that this doesn’t keep happening? Or does this have absolutely nothing to do with Bartonella, and it’s just some extremely strange coincidence?
As I wait, I’ll be welcoming all the positive energy, healing vibes, prayers, well wishes, and love you can send my way. At the end of the day, I hope I’m on to something here. Not as much for myself, but for everyone who comes after me and finds themselves in a similar situation. Maybe others can learn from me- whatever this happens to be. I’ll certainly keep you posted.