Gosh I'm a slow story teller. But the clock is ticking. (They have me on the books for surgery this Tuesday, 10/6 at 11am.) And, I'm running out of time to tell the rest of this story before then. Thanks, Rayna for your kind words of praise & encouragement to keep writing. (I did like The Glass Castle.) (photo credit)
So, where were we? We'd just returned from vacation. I finally returned to work for a short day on Monday, August 24.
While I was in the city, I also visited my dentist to talk with her about the canker sore and see if I could get some medicine my friend said she has taken to head the next one off at the pass if one ever tried to crop up again. She didn't want to give me the medicine but she did want to clean my teeth and work on my gums, leaving them sore & bloody. I have trouble with my gums and just before the first canker sore appeared, I'd tried flossing because I'm supposed to but floss but ended up with an especially yucky mess.
In the ER, I learned that we have a lot of bacteria in our mouths and that when I flossed, I likely released a bunch, maybe leading to that first canker sore. Looking back, I think that when I went to the dentist to try to ensure I didn't get another mouth sore, we released a bunch of new bacteria my body wasn't prepared to counter.
After leaving the dentist's office, I was picked up by Cam. We swung through Marin to get Sam then headed to Sacra-
mento for the Green Day concert. I was excited about the show but achy and not feeling well. I had a margarita with dinner and then Billie Joe and the adrenaline carried me through. It was a joy to be jumping up and down and pumping our fists in the air with the band but they wouldn't let us sit down. It was Sam's first big stadium concert for a band we all love. Afterwards, he said it was "the funnest thing ever." At 12:03am on 8/25, I posted, "Mary Maddux was simultaneously exhilarated & exhausted by the Green Day show." (Cam wrote about the show on his blog.)
I made it back to work a little after noon the next day. I stayed until after 7pm that night, finally getting some work done. That night, like this night, I was awake in the night. I wrote, "Mary Maddux is so pumped up to finally be feeling better that she has been awake for hours." Deanne encouraged me not to overdo it. Maybe I should have listened.
I worked a full, long day on Wednesday, the 26th, the day before Sam's first day of 7th grade. Thanks, Cam for taking him shopping for school supplies that night and thank you, Sam for not needing much. That night, my status reads, "Mary Maddux slept."
On the 27th, instead of picking Sam up from school to hear about his first day, I just talked with him on the phone about it and worked until almost 9pm. (I should mention, we had auditors coming by the next day who were going to pull files randomly. I was trying to make sure all of my paperwork was in order. I felt pretty good about where things were when I left that night, all things considered.)
The next morning, I arrived early to do a tiny bit of last minute prep for the auditors. I was saddened by the news on the paper in the front lobby that morning about poor Jaycee Lee Dugard and the crazies who held her captive for 18 years. Have I told you how much discouragement I was feeling about my work at this point? It was exhausting to keep trying and keep trying and feel like there was so much resistance where there shouldn't be. Why can't we just take care of our kids? Why can't we be compassionate to one another? What do you do when you know about a sexual predator who is free, who the police aren't trying to prosecute, and you read a story like this one? Keep speaking up and asking questions, I guess.
At 11am, I bolted. Way back when, Cam & I had purchased tickets for the three-day Outside Lands music festival in Golden Gate Park. Pearl Jam, the band he was most excited about seeing was playing that night and we wanted to get a spot with a good view of the stage. Before heading to the park, we grabbed lunch and had a picnic in South Park. (Cam wrote about the festival.)
I was tired when we made it to the stage but happy to settle on a blanket on the grass with some grapes and water and listen to the early bands. At first, I was standing for Built to Spill but in the middle of their set, I was tired, laid down and fell asleep. Later, Incubus had me rocking out and jumping up and down again but I was tired during Pearl Jam and so annoyed by the people crowding around us. We missed the sign for the shuttle bus and walked a bit out of our way which was tiring but I just kept putting one foot in front of the other.
Saturday, the 29th, we had an early lunch/late breakfast near the Marina then camped out at one stage for the day where we enjoyed music by Raphael Saadiq, Jason Mraz, Black Eyed Peas & Dave Matthews Band. Again, I was cranky at people who invaded my space but think I made it through the day without falling asleep.
The last day of the festival, we were tired but did lots of blanket laying between sets. My favorite acts from that day were Lenka, The Avett Brothers, Brett Dennen and Band of Horses. Surprisingly, Cam was ready to head home before Band of Horses finished their set. He'd been really looking forward to seeing them but we were both spent. At 7:40pm, we were on a shuttle bus headed for home. Big shout out to the Peppel & Zaklikowski families for having fun sleepovers with Sam while Cam & I had some grown-up play.
On Monday, 8/31, after an arduous meeting about if a struggling 19 year old in a precarious situation should be "emancipated" from the child welfare system, I got news that afternoon that my job was being eliminated for financial reasons. (One fifth of the staff was laid off.) Tuesday morning, I took my time at home, making banana bread and listening to a new duet by Brett Dennen & Natalie Merchant before going in. I was processing again. Wednesday was a big day with court in the afternoon. I did my absolute best to convey to a team of people responsible for caring for a youth why we thought more resources were needed for him and his family. They heard me and said they appreciated my perspective but we didn't get much out of them. I was ready for a break.
One of my new, worst fears was realized when that Thursday, I started feeling a new sore forming in my mouth. I tried to will it away, hoping against hope that it was nothing major. I worked a short day and posted a note a little before 7pm that evening saying I'd taken a nap and was feeling better.
The next morning (Friday, 9/4), I was back in the dentist's office, looking for a way to head this mouth sore off at the pass. They said the sore was right on a salivary gland which was concerning to them because if the gland became infected the side of my face could swell up and the infection could even spread to my ear. They gave me a prescription for some Amoxicillin but nothing to help with the pain and discomfort. Again, the sore was on the right side of my face and my right lymph node was swollen and I was running a fever. I started popping Motrin like candy.
At least I had the antibiotics, I figured. Things should start getting better over the next few days, I reasoned. I rested on Saturday. Sunday, even though I was feeling puny, we went back to Golden Gate Park, this time to meet friends for Shakespeare in the Park.
When, on Labor Day (9/7), the sore didn't seem to be getting better and I was worried I was getting another sore on the other side of my mouth, I started crying. Cam was supportive and empathetic. Encouraging me to see a doctor.
First thing on Tuesday, 9/8, I went back to the dentist. They were concerned because my sore didn't look better, my face was starting to get swollen (along my right jaw line) and I was bawling in their chair. They sent me to an oral surgeon who thankfully was able to see me that afternoon. They took a fancy x-ray then I nearly hit the guy after he poked and prodded and squeezed the sore on the inside of my cheek, causing excruciating pain then tried to send me away telling me to suck on sugar free lemon drops. I was feeling frantic and started crying in his chair. I wasn't sure how I was supposed to focus on transitioning my work to remaining case supervisors when I couldn't function because of the stupid sore in my mouth.
He acknowledged my parotid gland (#1 on the image) was infected. He told me to continue taking the antibiotics. He upped the dose and gave me a few more days worth and a prescription for a medicated mouth wash but said pain medication wouldn't help my sore heal. But what about making me feel better? I was embarrassed to have to grovel but did end up getting some Vicodin.
With the Vicodin, I was able to power through an important meeting at 9am the following morning (Wednesday, 9/9) then went home to rest and have some lunch before going to see my primary care physician that afternoon. She seemed to think that I was in good hands with the dentist and the oral surgeon but did agree to order some blood work per the dentist & my request. A colleague of the doctor's had asked me to get blood work done last spring but I never got around to it.
That night, I was again awake in the night. With my pain medication, I started feeling optimistic and made plans to attend Power to the Peaceful and hopefully see Alanis Morissette, Michael Franti + Spearhead. My friend, Anne wanted to attend their Global Action Forum & celebration the next day for her birthday. I stated my intentions to go with her.
On Thursday, 9/10, they drew blood for the first time. Friday afternoon, I started to worry again because I was facing another weekend and while I was tolerating it better, the sore in my mouth didn't seem much better after a week of antibiotics. Plus, now, I had swelling up to my right cheek bone. I spoke with the oral surgeon who said I should go to the emergency room if my face swelled up really big over the weekend but that otherwise, he would see me on Monday, as scheduled. We had rain and thunder during the night on September 11th.
That Saturday, I knew I was sick when I was too tired to even try to go to an afternoon/early evening concert of one of my favorite musicians of all time. I stayed home. My medical knowledge started increasing as I read about how a nerve runs through the gland the sore had formed upon, which was now infected, explaining part of the pain I was experiencing.
I didn't make it out to celebrate Anne's birthday with her on Sunday the 13th. More resting was needed. I was still running a fever. I'm not sure which of these nights I was waking up in the night with shivering, teeth-chattering chills. It seems like that was happening most nights for weeks and we'd just become resigned to it.
Giving me something positive to look forward to, Cam bought tickets for us to see Swell Season when they come to town in November.
We discussed the possibility of going to see Regina Spektor in October but don't have tickets yet. She has several songs I like. One of them was comforting to me when I was first sick. Sometimes, when I sing along, I change a line of this song to say, "No one laughs at god when they have a canker sore." Not the same as war but the closest I've come.
Monday, 9/14, I passed off most of my work & went back to see the oral surgeon. He thought I looked better, despite there still being a sore in my mouth and some swelling. He told me to finish up the antibiotics and come back to see him in 10 days. I had three days of the antibiotic left and only 5 pain pills remaining. He said that hopefully I wouldn't need them for much longer. When I asked him about the fever and chills, he said I should talk with my primary care physician and ask her to look at my blood. He specifically mentioned having her look at my white blood cells. The next morning, I sent her an email.
My last day at SF CASA was Tuesday, 9/15. Everyone was very kind to me. They wanted to have a happy hour to celebrate us liking each other as human beings but I wasn't up for celebrating much at the time and just barely felt human. I thanked them for the offer and asked for a rain check.
Early that evening, my brother, John arrived in time to help me close up my desk at CASA and carry my things up the hill to the parking garage. As I was finally leaving, my boss tried to say all these nice things about my contribution and how I would be missed. I was so spent I was barely able to say thanks.
That night, I had an email back from my primary care physician. She said she was sorry to hear I was still feverish. She also told me for the first time that my white (and red) blood cell counts were low. She said she thought my mouth sore/parotid gland infection was only partially healed. She asked me to come in the next morning for more blood work.
I appreciate John going with me to the doctor on his first morning in SF (9/16). The doctor gave me a second antibiotic (Clindamycin) that was intended to specifically address mouth issues and also gave me some more Vicodin saying I had a legitimate reason for taking it. That afternoon, my stomach was a upset and I needed to rest, napping for over an hour. I wrote the doctor asking if she really intended for me to be taking this new antibiotic in addition to the old one and the Motrin I was taking for the fever and the Vicodin. I was so full of medicine and not able to eat much because my mouth was still a mess.
That evening, she said she did want me to take them simultaneously if I thought my stomach could tolerate them both. The next day, 9/17, I took the new antibiotic (and the old one). I napped in the morning before grocery shopping which wiped me out and again immediately after putting the groceries away. We were all supposed to go to the Lords of the Samauri exhibit at the Aisian Art Museum that night but I just didn't think I could do it. John agreed to take Sam into the city. They met up with Cam and enjoyed the exhibit while I rested.
That night, I received a phone call and email from my primary care physician. She'd received the results of my latest blood work. She said it showed a persistence of low white blood cells and that the type of cell that is most important in fighting infections, the neutrophil, was very, very low. She said I should avoid sick people, crowds and public transportation. She said she wanted me to call the next morning to make an appointment to see a hematologist.
One weird thing was that that Thursday night, the first night of the antibiotic, when my doctor was just starting to worry, for the first time in a long time, I didn't wake up shivering from a fever. This was an exciting development in my eyes and I started to feel hopeful that I was on the road to recovery. My doctor had said it was entirely posible that my low blood cells were due to an infection and would return to normal over time. Since I had been sick for so long, this seemed like a reasonable explanation to me.
On John's birthday, Friday, September 18, I called the hematologist's office and was told they could see me in two weeks. I was still very tired but didn't have chills that night or the next night. I rested Saturday and was supposed to see my Aunt Maria that Sunday when she was at Stanford but I was too exhausted. She did send much needed love and encouragement by email that day telling me I was an amazing woman, making me cry. She wrote, "Mary, you are so treasured. Wish we could have shortened the Tiburon/Los Altos distance this weekend, but know that many, many hugs came floating your way on the coastal breezes." Cam did the laundry. I read and slept.
That Monday, Sam didn't have school, Cam didn't have work and we were supposed to have a family day. First, I had to finish up a court report for the nine-year-old boy for whom I am still a volunteer CASA. Then, I had to go get more blood drawn. Finally, we decided to drive to the beach. We ended up at Stinson because Sam wanted to break out his skim board(s). It was nice to be out of the house even if all I did was sit in the car and lay on a blanket.
The hematologist had called that day, saying he had my lab work and that I could/should call him back. I called back quickly but didn't reach him. The new antibiotic was finally making the sore go away. I hadn't taken the pain meds lately and I really thought I was getting better until speaking with him the next day when he said he might want me to go to the ER. Then things started getting interesting.
To be continued...