Nov 19, 2017 Latest post:
Apr 24, 2018
The first strange thing that happened to me started on 9/15/17. That evening (a Friday of course) I noticed that I had tingling to the right lower side of my face from my chin towards my ear. It felt like I had been to the dentist and they had numbed up my face, however I had not been to the dentist. Of course, I did the cardinal sin and try looking up my symptoms on Google which I know is a no-no. However, it was after hours and I didn’t know what was going on but I wasn’t going to go to an emergency room for such a silly symptom! It continued over the weekend and I contacted the Dentist Monday morning and let them know that I was having numbness and tingling in the face. They had me come in that day and they tested all the teeth make sure that they were alive and took x-rays to make sure there wasn’t any abscess which there was not. The dentist felt that it was an inflamed nerve. He wanted me to take ibuprofen every six hours and wear my mouthguard (that I normally wear just at night) around the clock.
So I did as the dentist said and wore my mouthguard and did the Ibuprofen for a full week without any change. In fact, I had started getting pain on the right side of my face by my ear/jaw. I can’t really remember having any clicking in the jaw, But the dentist that maybe then it was a sign of TMJ (painful jaw disorder). I continued using Tylenol and ibuprofen alternately to manage the pain. Unfortunately, it didn’t really relieve the pain and the pain actually got really bad after I ate some Chinese food that I was in tears (barely cooked broccoli). I am not someone that likes taking pills in the first place and so was difficult for me when the dentist recommended to start using muscle relaxers. They just made me tired and only somewhat helped with the pain. So, when I went in to my MD I talked with her about going to the chiropractor and she agreed to let me try this. It did help some with being able to open my jaw better. I also had my back adjusted for the first time. Later, I thought I had either a “bad adjustment” or that I had pulled a muscle. The pain in my lower back/R sacrum (part of my pelvis) would eventually get that bad that I was unable to walk more than a few steps before I was doubled over in pain and had to lay down. Further down the line I would find out that this area of my pelvis and face had a large concentration of my cancer.
October 13th, I went in to the NP that was covering for my MD. I had felt like I had fluid behind my ears and the chiropractor had said they needed me to go to my primary for this. I felt like I would get dizzy if I bent over and lose my balance. I have a history of chronic ear infections after colds, but I hadn’t been having cold symptoms. The NP stated that I did have some fluid behind the ears, but it wasn’t infected so that she wasn’t going to have me do any antibiotics at that time. That Sunday, I took Austin to church. However, while I was driving I noticed that the lines on the road were not straight and crossed over. I realized that I could see the lines if I closed either one of my eyes, but I couldn’t together. Later that night as I was watching television I noticed that I was actually having double vision and that wearing my glasses didn’t help. I was scheduled to work Monday night and so since I couldn’t get into the NP or my MD I went to the walk-in clinic. My eye sight was just fine when covering each eye and the walk-in doctor wasn’t concerned about my eyes. She had me lay down turn my head to the side and sit up really fast (trying to shift fluid in my ears). All it did was make me very dizzy to the point I almost fell off the table and get nauseated as well as freak me out. This mess had been going on for awhile and I was emotional so when it scared me and I started crying the walk-in doctor started talking to me about my anxiety and I felt that she just dismissed me. I explained what I did for work and how I didn’t feel like it would be safe to work and felt like I had to beg for a doctor’s excuse for the night. (Would you want a nurse that had to close one of her eyes just to see what hand I needed to poke for an IV?)
Luckily, my NP had scheduled me to follow-up with my primary and squeezed me in to see him as I was continuing to have symptoms even after trying steroids. I reviewed with him all my symptoms and showed him my eyes. He was very concerned about my eyes and wanted me to go get an MRI of my head right away and see an opthomalogist. He’s awesome by the way (Dr Kinsey Nelson) -shameless plug :). He wasn’t able to get me in to do the MRI that day or the next so he states “I don’t like to tell people to go to the emergency room, but I think we need to do this right away.” So, although Jim needed to work that night we packed up and went to the Essentia across town to get the MRI done. The results of the MRI did not show any clots or masses which was good, but the bone above my L eye lit up “funny”. The ED doctor explained that it could simply be a blocked sinus infection or it could also mean a leukemia or lymphoma. I was scheduled to see a hematologist/oncologist, they were going to have me do a lumbar puncture, a CT scan of my chest and abdomen, and to see the neurologist.
I saw the opthamologist the next day and she was in contact with the neurologist. We discussed that if my vision stayed the same that we would look into using a prism to help adjust my vision. All this time I couldn’t drive and she and Dr Nelson were in agreement that I shouldn’t go to work. I was still relatively mobile, but balance was off due to my vision along with the dizziness. I saw the hematologist/oncologist that Monday. Mind you she didn’t have all the scans, but she basically blew me off. Her exact words were, “I think they just didn’t know what to do with you so they sent you to me.” She wouldn’t even really look into my mouth even after I had stated that my gums were swelling and that I for a little while was having increased difficulty swallowing because of the swelling and that all my molars were getting loose on the bottom. I would have gone back into the dentist, but he was no longer taking our insurance and I didn’t want the added expense on top of all the tests going on. I did the lumbar puncture (LP) and blood work they tested for Lyme disease and other various things.
October 25th I had my CT scan done of my chest/abdomen and saw the neurologist. She was very thorough and listened well to my lengthy story. Apparently the reason they wanted to have the CT done was partly so they could analyze if there would be a good place to do a tissue biopsy other than in my forehead (not wanting to disturb something they didn’t know what it was and drill into my head). The CT scan showed several lesions on my liver and both of my ovaries. At that point, she then stated that it was time to consult with Mayo and go from there. I also was able to get into a new dentist that day that took our insurance and found out that I did have an abscess now on the lower R side of my mouth (swelling on both sides). The neurologist said that she did not want them to extract the tooth until Mayo had seen me, but I was started on an antibiotic for the abscess.
The pain was getting progressively more in my R sacrum and I was using Ibuprofen, Tylenol, and heating packs around the clock. I wasn’t able to function as a parent or even as an adult. My mom and Jim carried me through the weekend and the plan was to go to Mayo on that Monday 10/30 and consult with the OB/GYN surgical specialist. We had been in contact with my NP and she said she was going to write for nausea meds and pain meds. Unfortunately, I didn’t have a ride and didn’t get to the pharmacy before the clinic had closed (of course it was a Friday again). It made for a horrendous car trip. First we had to make it to Jim’s mom’s in Buffalo after packing for all 4 of us and basically they had to help me pack all my stuff too. My husband, mom, Austin, and I all made it to Alexandria without incident, but after we sat down to eat my pain went through the roof and the last 1.5 hours to his mom’s was excruciating because I couldn’t lie down. I felt so bad because I couldn’t even hold it in and despite Max freeze ointment and pain meds I just couldn’t stop crying. Austin eventually fell asleep while having to listen to my sobs. I felt like the worst parent in the world.
Most of the weekend I spent holed away in their master bedroom. Eating was a chore to try at all, but I knew I needed to try. I couldn’t even enjoy Jim’s mom’s cooking and that’s saying something! Nothing tasted the same and by the time I got to Mayo I later found out that I had lost 45 pounds over the past couple weeks. We continued our trip to Mayo late that night and again towards the end my pain was really getting to me.