Chapter 6: New medical adventures

Monday, June 22 was “Julie’s Medical Adventure” Day. Daniel and I sat in traffic on a very stressful rush hour drive to see Dr. Moore (whose office is conveniently located in the most traffic ridden spot in the metro area). I had felt good going into the appointment but gradually grew more skiddish the closer we got. It didn’t help me that Daniel had a stressful work call to handle en route to my visit. We walked into the office and it was full of people who were easily, on average, at least 40 years older than me. I don’t belong here, I thought.

After filling out the 37 pages of paperwork (can’t fault a physician for being thorough), I took a bathroom break because I needed a breather from the AARP meeting I was sitting in (with all due respect, I love older adults! But I don’t love feeling like I’m one of them). I walk out into the lobby and ran into none other than my most recent intern and new PT graduate Dr. Anne Waldner! What a ray of sunshine in my terrifying and geriatric-filled morning! She had a doctor’s appointment too. I felt myself relax a bit.

They pulled us back into the room and the PA spent a lot of time going through medical history, examining me, and making a plan for how to chase down all the medical records I wasn’t able to chase down myself.

Then Dr. Moore came in and said “HOW OLD ARE YOU?” Thanks Captain Obvious. I know I could be the grandchild of all of your patients. But all jokes aside, he thought due to my age and my general health, plus the length of time this thing has hung around in my body without many symptoms—that it wasn’t cancerous. But we had to prove that. I was referred for a PET scan at the hospital. Then he said he needed to do a bronchoscopy and mediastinoscopy (will define in a sec). Then he said that the mass would likely need to be surgically removed at a later date once we could figure out what it was and why my lymph nodes were enlarged. He said “we have to make sure you don’t have a lymphoma too.” That took me by surprise, so I backtracked with some nervous tone and said (trying to sound all nonchalant) “so uh, let’s go back to that lymph node thing. What other things could the swollen lymph node be OTHER than lymphoma?” HE explained it could be anything-infection, inflammation, or or course metastases from the mass itself. Hmph. Not what I expected to hear. But it honestly didn’t surprise me. As terrifying as all of this sounds, I felt ok knowing he said fairly confident he didn’t think the mass was cancerous, and that we had a preliminary plan. I’ll take the victories I can get.

Definitions:

Bronchoscopy: tube stuck down my throat, into my windpipe, into my R lung, and pieces of the mass would be taken for biopsy. I was familiar with this procedure so it didn’t freak me out too much.

Mediastinoscopy: I actually had no idea what this was when he said this so I had to look it up. It’s a surgery (like, incision, general anesthesia, real surgery). They make a cut right above my breastbone and stick a bunch of tools and a camera down behind the breastbone to dig out and remove some lymph nodes. Ouch.

Dr. Moore said because I’d be under general anesthesia, he’d just do both procedures at the same time. He seemed concerned that I would care about the visible scar on the front of my neck from the mediastinoscopy. I was thinking “COOL!” Back when I had surgery on my shoulder, I was a little disappointed my arthroscopic port holes were so small. I guess you have to be careful what you wish for. So maybe I’m a little weird…

We left the appointment and I headed to give blood at Dr. G’s office. My labs from my recent physical were off the charts for inflammatory and infection markers (elevated CRP, homocysteine, low RBC, high WBC, high platelets). So Dr. G wanted to re-draw to see if there had been any improvement in 2 weeks.

I then went to see Dr. Grossman for a follow up from my first functional med visit. I told her all about my die off symptoms.   She said she’d never heard of anything like this before except in one patient. I had read countless stories on web forums and message boards of them. So we upped my liver support and consulted my labs that she had drawn. Sure enough, she had drawn more thorough labs than Dr. G (that’s functional med for ya) and there was some definitely concerning stuff in there. We also figured out I have a genetic disorder (heterozygous MTHFR) that keeps me from processing and absorbing folate, B vitamins, and producing serotonin 100% well. Hmmm…did someone say serotonin? Remember that time I had a bad panic attack and anxiety? Yeah. For a lot of people those happen when they don’t have enough serotonin (among several other reasons of course). And B vitamins and folate are necessary for controlling several organ system and diseases. And just how many systems have I had issues with in the past several years? Hmm… So that was good to know. I got a special supplement for that.

Then we looked at food allergies and sensitivities. This was the moment of truth.

Allergies: goodbye (forever) almond and egg yolk

Sensitivities: goodbye white potato, spinach, onion(all kinds), halibut, soy, carob; and so long for now…I can have these in moderation: avocado, coconut, chocolate (!!!!!!), cow’s milk (eh, whatever), cane sugar, honey, all stone fruits (fruits with a pit), oranges, ginger, and cinnamon. Many of these items are things that are candida diet STAPLES. I’d been eating so much avocado and coconut to try and maintain weight and get calories since they are so calorie dense and healthy.

So in the same day I found out I was signing up for 2 major surgeries AND chocolate was not agreeable with my system. It was a tough day.

I felt pretty defeated. Back to the drawing board of diet and nutrition and meal planning. Bring on the tears. But Dr. Grossman said something I needed to hear: Be gentle on yourself. Have some foods with sugar. Your candida is under control now. So I could work in one “sugary” food per week to see how I responded. She also reminded me that happiness and nutrition are not mutually exclusive, and having a “banned” food may bring happiness and decrease stress. So chocolate may be an ok form of medicine sometimes. Believe me, I busted into the REAL Cadbury chocolate bar (straight from Europe) that a friend had brought me recently. And I stopped at the store on the way home to get granny smith apples (the apples with the least amount of sugar). She said I could have up to 30g of sugar per day, so between the apple and the 3 squares of chocolate, I reached my limit. You all know that is not a lot of food—just another illustration of the fact we eat SO MUCH SUGAR as a modernized society!

It took a while due to some slow scheduling of the hospital, but I eventually had the PET scan. I was told it would be long and boring, so I prepared for a few hours of quiet meditation. I had the scan the Thursday before the July 4 long weekend, so I thought it would be a nice relaxing way to wind down from the week. I was right! They make you sit in a room in a delicious recliner for an hour. No light, no music, and I was not allowed to move, talk, or do much more than breathe or sleep. They infused me with radioactive glucose (I was glowing!) and didn’t want the rest of my muscles to absorb the glucose. They wanted it all to be absorbed by my organs—namely by the “questionable” organs.

I really had a full hour meditation-the best I have ever done. I did an imaginary walking tour of one of my favorite places on earth-Duke. During the tour I walked through each year of college and relived so many memories. It was beautiful and so relaxing. In fact, I was disappointed when the nurse came in and told me my time was up. We just don’t give ourselves enough quiet time, folks. I give myself a few hours every day! I could definitely be more mindful and compassionate to myself during that quiet time, but it’s so crazy to think about how delicious that hour was. It makes me just want more time like that.

The scan only took 15 minutes so I finished out my walking tour. Then sat in the car in the worst afternoon rush hour (remember, that hospital is in the worst place in Atlanta!) and got home to prepare for a much needed weekend away.

Daniel and I both agreed that our bodies and brains were mush. He’d been busy with a lot of stressful work stuff all week. We both agreed date night was in order. We went to one of our favorite Atlanta places—YEAH! Burger. It’s one of VERY few places I have found (who am I kidding-I have only found 2 places) in all of Atlanta that has a very agreeable menu to my strict diet. Really, we just don’t eat out unless it’s YB.

I had a bunless bison burger outfitted with all the good stuff-greens, cucumber, sprouts, bacon, and I ventured into mustard for the first time. You may be thinking, “Mustard? What’s the big deal?” Because of the way it’s processed (even the organic kind) it’s banned on the Candida diet. But let me tell you-when you haven’t had something with that much flavor in a long time, you’ll turn into a ravenous animal. I also ventured into sweet potato fries as my “sugary food” to add for the week. I had to hold myself back because I believed I was already over my sugar limit for the day based on my careful calculations (food scales are the bomb!), but those fries were HEAVENLY.

Read on to Chapter 7: Stuff nobody likes to discuss, but is real and pervasive for more on this story!