The Journey to Today
I’ve written updates in my head, drifting off to sleep on days where I was trying to find the words. Wanting to write, call or just let everyone who is caring so much on me know what has been happening since Tennessee. My intentions of sending updates fading as the days progressed into weeks and months being back in our own medical system and getting sluggish replies globally for the next steps which, regardless of health or energy, were needing to happen.
So… apologies for this novel…. It’s continued to be a journey…
For the past number of months, I have gone through much more, for quite a period of time my brain was in, the best I can describe, a fugue state and I ended up quite sick as well with an intestinal bacterium, which was related to my inability to think or move.
The “much more” begins with coming back from Tennessee with a “to-do” list. The biggest were discussing the potential for cancer scan options or bloodwork and getting the 3D conebeam scan I needed of my jaw. As the metal in my body and jaw have been highlighted by multiple practitioners as being a primary concern above all else, including the Lyme and Mold, it was the start of the big push to find a surgeon. The best clinic in the world… a Swiss Clinic… had requested the 3D scan. Within a week of being home I had the scan (I had booked in advance) and sent a thumb drive of details to Switzerland. Thus began an interesting new journey.
When the email from Switzerland arrived, I thought they had accidently mixed up my scan with someone else’s. Not only did they not mention the metal in my jaw, they sent a quote for removal of cavitations in all four areas of my wisdom teeth. I’ve never had wisdom teeth, nor had any teeth extracted, thus, how could it be this scan was mine? I sent a follow up email indicating our discussion of having the metal removed from my jaw was not included in their quote. The response back changed everything… I was too complex a case for them. They were refusing to remove it.
I tried Canadian doctors. Their answer was a three year wait and they still may not offer to remove the offending metal, regardless of the bloodwork confirming toxicity. A California doctor asked I send my scans. And my world shifted again. He sent the same results back as Switzerland, this time including the metal. I have had an unbeknownst infection (for how long I don’t know) in all four areas where I should have wisdom teeth. Necrotic (dead) tissue is residing in these areas causing a continual burden on my body of infection. This would have occurred in the embryonic stage of tooth development, and as I aged, so did the infection. Who knew I would find something new! Huh. An added layer of why this was never discovered, is that many radiologists are not trained at the level needed to read and diagnose cavitations. The added layer of chronic infections based in bone pockets made sense to why my body is struggling so extensively.
The California doctor, a lovely and kind man, could remove the cavitations but had only done metal surgery 5 times in his career and recommended a surgeon in Florida… the best of the best in the US. I contacted this clinic, went through the slow intake process, … until they “ghosted” me. Follow up emails begging for assistance finally resulted in a response weeks later. They would not do my surgery… find someone else. I spoke again with the referring California doctor and asked his opinion as to this reaction. Was it political, insurance based? He believes they select their cases to keep their track record looking shiny. As my case is so complex, I would risk their success rate if the process failed. He said he wasn’t surprised.
I reached out to another surgical clinic in Tennessee, thinking I could get back up treatment to help my immune health from the same treatment centre who helped me in February. Again, although a lovely call with the intake personnel, no response ever came.
So…. I still had the Costa Rica clinic who had offered to do the surgery, but did they know about the cavitations? I had spoken with them in March, long before I knew I had them. And the California surgeon came back and said he would do the surgery on my jaw as well. He said (without ego) that he knows he’s a good surgeon and felt I would still be safe with him, even though he didn’t do the procedure often.
I have been working with a doctor in Washington State who specializes in chronic patients and she has become my “wing-man” (wing-woman) for discussing which would be the safest route forward. She has the skills and knowledge to give insight on cases like mine. We were hoping she could test me on anaesthetics, antibiotics, and all other surgery components ahead of time as I react… to everything… which makes the journey so difficult and high risk.
It was the beginning of May as these dental components were finally coming together. Simultaneously I had been asking different surgeons their opinion on having an MRI to check for the Pineal gland cancer, but given I had recommendations that were completely contradictory… some said my jaw metal would stay firmly in place, others said they’d seen the plate fall off the bone during removal surgery and it wasn’t affixed at all… the risk of having an MRI with a large piece of metal turning my brain to mush led me to forgo the MRI with the belief and decision the cancer had been taken care of in Tennessee and I needed to focus on the metal removal (as it was indicated to be a source of the cancer). Once the metal was removed, I could reassess.
Dr Amy from Washington gave a deadline of the end of May for surgery so I had time to recover before Marijke and Caleb’s wedding. But Costa Rica is on “Jamaica Time” (my take on the slow communication) and it took a long time to get responses, and I often had to remind them of my existence. In the middle of all this I had the crazy discovery that there was a doctor who did cavitation surgeries in Kitchener. It was a Eureka moment. I didn’t need to travel. This was huge to me as the risk of “death by plane” due to the bloodclots in my body was and is very real. But alas, I am too complex again, and he couldn’t do the metal removal. Oh to be “normal”. He recommended me to a newer clinic in Oshawa (only in existence after I started searching for this type of treatment ten years ago). I scheduled an appointment with the Oshawa doctor… long story short, he told me to go to Costa Rica. He said, globally, all cases like mine go there. He sends clients there and has trained there himself. In his opinion the centre there is better than what I could hope to get here in Canada.
With that advisement, Dr Amy and I had to make the decision between me flying to California or Costa Rica. In the end we chose Costa Rica as it would have me in a hospital setting and would likely have lower emfs, which is important for my blood flow.
We didn’t hit the deadline for the end of May, the scheduling and communication between offices was slow. The big push being the wedding day on July 10th… it became an emotional journey of “what am I doing”? Even if I left by the beginning of June, I wouldn’t get back with much time to spare or recover before the wedding. But, where I was in May, I didn’t have the capacity to attend, I just felt so awful. I questioned if I was pushing to hard and if this was God’s will or mine. So, conversations with Jeff and more tears shed… we decided to press on. This had been a journey a long time in the making. We had been searching for so long and the pieces were finally coming together. As doors were closing all around me in April, on positive days I thought “Wow, God is really directing me specifically here.” So, holding on to that thought we used our air miles and booked tickets to Costa Rica.
Not the “fun – let’s go on a vacation” Costa Rica. But the terrifying, I don’t want to go, trip. The number of miracles needed for survival are many. I have to survive the plane trip (with blood clots), I am very, very reactive with anaphylaxis to things like scents, chemicals, foods, etc… so driving in a rental car, finding food (of the few I can handle) in a foreign country, having my body be able to tolerate the multiple medications for surgery (and I have reacted to many medications in the past year), surviving surgery itself. Then the recovery. Then flying home. Then feeling fantastic and full of energy to smile and zestfully enjoy a full hectic day of wedding bliss.
Lots of miracles. Lots of prayer. And thus, here I sit in front of the keyboard again. I so desperately cherish your prayers as I work on my fears and trust, so I lay bare my ongoing story and life… thirty years of a slow decline into non-functionality. Losing myself and who I am to something invisible. Trying every angle, pursing every avenue, enduring every criticism to find my way back to me, and praying to be able to live life with my family, not just in the living but in the abundance of living as God has promised. I pray this is it. This is the answer to prayer we have been waiting for.
The flights were booked for June 6. Surgery will be June 9th at 1:00pm Costa Rica Time (3:00 EST time). Originally, we factored in a two-week recovery in Costa Rica. As Marijke’s bridal shower is on the 20th, that would be my fly back home date. So, we moved the date to the 18th but would still not arrive home til the 19th. The Lord willing, I am healthy and strong at a very rapid rate and could fly back sooner than expected.
I will strive to keep the daily updates going again (although after surgery it may take a few days). They will be much shorter than this plethora of words. I promise! I won’t be summarizing three months worth of information. I do not have access to text messages but can see, e-mail, Whatsapp and Messenger for anyone trying to reach me or Jeff.
Thank you for your Love. I am blessed.
