First of all, thank you for joining me here. This is only for those who want to keep up. No pressure to read it at all! This is all very detailed as to give you all answers you may need.
Thank you for loving me! ~Heidi
Here we go... I noticed swollen lymph nodes on my neck in August 2015. They were painless and did not bother me at all. I don't have a spleen (car accident in high school), I don't have tonsils, and I have horrid allergies. So I'm a sinus mess and battle infections often - which is nothing shocking considering all of the above puts a lot of stress on my lymph system to fight anything off. At a PCP dr visit last August because of a suspected sinus infection, I mentioned the nodes on my neck seemed larger than I'd ever noticed. She agreed and ordered a mono test - which was negative. My sinus infection came and went. I had another infection in November, which also came and went, but the lymph nodes on my neck never changed. Also of note, my white blood cell count was normal this whole time.
In January 2016, I noticed smaller bumps right above my collarbone as well. I didn't know if these were lymph nodes, but assumed so. I asked a brilliant nurse practitioner friend of mine, very casually, as I was putting on my headset to teach a Pure Barre class one afternoon, "Hey, is it weird I've had these lymph nodes here for months? They don't hurt, and I don't even notice them until I touch them. Now I have these bumps on my collarbone, too." She felt them and encouraged me to see my PCP again. So I did. After 4 vials of blood, chest and sinus x-rays, a physical exam, and an ultrasound of my lymph nodes, we found no infection - just abnormal sized lymph nodes, which we already were aware of. So she told me to see my ENT.
I see my ENT end of January 2016. He explains to me again the natural overworked lymph system I have (no spleen, no tonsils, bad allergies) and wants me to do a round of antibiotics to rule out a baseline infection. Which made perfect sense because I will often have a bad sinus infection with no elevated white blood cells, so this plan I thought was good. He wanted me to do that and then have a repeat ultrasound in 6 weeks. I finished that round of antibiotics, and also ended up doing another round between that time since I ended up with bronchitis as well, had the repeat ultrasound with zero change. They hadn't increased, which was good. They didn't get smaller, which was what we were hoping for. They stayed the same, which meant more tests. So a few weeks later I went in for a CT scan with contrast (the dye injected into your veins) of my neck and chest. The lady blew my veins TWICE - which feels like someone pouring rubbing alcohol all over an open wound. After the second one, I was about to walk out. I was starting to think this was all pointless because again I FEEL FINE. I literally had just taken a Pure Barre Platform class before this appointment, which if you've done Platform, you know takes a lot of HEALTH and ENERGY to complete. So anyway the lady called in someone else who did the stick - which worked the third time.
My ENT called 2 days later saying the CT showed abnormally large lymph nodes "too numerous to count" in my neck and underarms. (Underarms? Where! I don't see them or feel them! This is all so bizarre.) So he recommended we do a needle biopsy of the largest lymph node in my neck. I said, "ok well I go to St. Louis this weekend for work. Maybe the next week?" He says, "No, I'm not in the office tomorrow, but I'm coming in to see you. Please come in and lets do it tomorrow." (which I should have known meant he wasn't expecting the best - because what dr is in a hurry?)
So I met him the next day, he numbed up the entire right side of my head and neck, and took several needle samples of the largest lymph node. It was not pleasant, but he prepared me for that, and he was fast and efficient. He then told me the results would not be back for a week, and if its bad news, he does not like to do that over the phone. I said, "well I really don't have time to come back. I'll be in St. Louis all week. Please just call me with whatever it is. I give you my permission." (because I don't have time for yet another dr visit, much less CANCER).
Well, he calls me the very next day. I'm driving on Mendenhall in East Memphis toward Houston's restaurant with my 8 year old, Jackson, heading to meet Jack for dinner. The phone rings, its my ENT's office, at 5:15pm on a Friday. "Heidi, its Dr. Touliatos. I don't have good news for you." All I could think was, "don't wreck the car." I was not quite to Houston's yet so I pulled into the Whole Foods parking lot, trying to keep Jackson in the car as he thinks we are headed in for dinner. I cannot even tell you what he told me I had. All I heard was, "the good news is, if you get leukemia, this is the best one you can get." I just said, "leukemia? what? how? I feel fine"... anyway then I asked him to text me the name of it because I could not even process. He recommended a colleague at West Clinic who he highly valued as a blood cancer doctor. He said when we hang up he is giving him a call. And he did.
April Fool's Day 2016 was one for the books.
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