Last Sunday, after what I thought had been a long day, I returned home from taking a walk with a friend to hear that a tornado had struck somewhere in Missouri.
This was concerning as I have family & friends in Missouri. I asked Cameron, which town(s) had been hit. When he said, Joplin, Missouri I was stunned into silence.
Joplin is less than 30 miles from Columbus, Kansas, the town that was my home from the age of 5 to 17. Since my town was very small, we would go to Joplin often, whenever we wanted to see a movie or hang out at the mall.
While my family moved away from the area over 20 years ago, through Facebook, I stay in touch with several friends from the area.
From a distance, I am sure it is impossible for us to comprehend what they have been dealing with but I thought I'd share some of what I've learned, some of what has made this disaster personal.
Thankfully, the people I know best seem to have been spared; however, many of them know people who have been personally devastated.
My friends experienced scary storms, during at least one, they were pounded by baseball-sized hail. After the tornado hit Joplin, several of my friends were incredibly worried about their loved ones who were in harm's way then out-of-touch &/or missing for a time.
Many of the people I care about have people close to them whose homes were destroyed. My friend, Susan's sister's family's home is gone. The father of our high school class president was also destroyed. Meredith's friend lost her home. My friend, Laura's friend's mom lost her house.
My friend, Heather said her brother-in-law's house & the high school she attended have been destroyed. My friend, Chris saw the neighborhood where his grandparents used to live destroyed. (Last I knew, they hadn't heard from the neighbors.)
My friend, Holly's sister's family's house was damaged but is still standing. Romel stood in line to get a permit to fix the damage to his property. My friend, Michelle thought her husband had lost his job when one semi truck was thrown onto the truck he normally drives. (Thankfully, the company has been able to operate out of a different location.)
As devastating as this loss of property has been, the people I know were all relieved to hear their loved ones had survived.Others were not so fortunate.
Some people I know know people who have lost loved ones. My friend, Lori's son's teacher's father was killed. My friend, Stephanie's friend's 16-year-old stepdaughter died during the storm. I can't imagine the heartbreak they must be feeling.
I think I read this was the deadliest tornado in more than 50 years. I know I read about people at the local hospital whose IVs were torn from their arms during the storm & about how people in St. John's hospital’s emergency room, waiting for treatment, were pulled through hospital windows. Unimaginable.
However, there is light in the darkness. I'm incredibly proud of my friends who have been working hard to make things better. My friend, Susan, a nurse who works at Mercy hospital in Joplin (but who was not working at the time) has been providing medical care & treatment to patients in the basement of Memorial Hall (a place I used to go to to see concerts) which has been turned into a remote medical triage center.
My friend, Aron, who is home on leave from active military service, helped distribute truckloads full of water. My friend, Derek, a former Cherokee County sheriff pulled out his old uniform to assist with the rescues. My friend, Jason returned to service with the Joplin Fire Department's Search & Rescue Team.
My friend, Hilary has been trying to find a place for her mom to continue getting her dialysis treatments. My friend, Hollie who was recently elected to the Columbus City Council has been monitoring subsequent storms & responding to the understandably jittery reactions.
I'm not sure what I can do from here other than let them know I care & make a donation to the American Red Cross to support the efforts of those on the ground in Joplin. I can share the stories I've heard and ask you to please join me in offering support, relief & care to those who have been hit so hard & in offering thanks to those who are there making a difference.
Feel free to share these stories with others you think would want to help too (http://marymaddux.blogspot.com/2011/05/this-ones-personal.html). Thanks so much.
While I was a student at Iowa State University, almost everyone else was regularly spending their Friday nights at People's Bar & Grill to see Ames' favorite band, The Nadas, perform. I didn't realize this. I was probably sitting on the couch next to Sam's dad watching football or sleeping through a baseball game.
Later, when I was going through my divorce and suddenly found myself twenty-seven, single and childless every-other weekend, I discovered The Nadas. It was a momentous occasion, actually. The night it was set to turn 2000, I decided I wanted to do something memorable. I'd read that The Nadas were hosting a New Year's Eve Party at the Hotel Fort Des Moines. I made up my mind to go. But, I had trouble finding anyone to go with me.
I called several friends who declined for various reasons. Thankfully, my friend, Tracey, took pity on me. She left her kind husband, Jim, home with her sweet kids, Jessie and Matthew, put on a gold sweater and braved the weather to accompany me to the party.
When we first arrived and were walking up the stairs, I noticed a handsome, interesting-looking man going down the stairs. At the party, Tracey and I had fun talking and hanging out, milling around, checking out the scene. There was that guy again. I pointed him out and Tracey encouraged me to go talk to him.
He was kind. He told me he was recording the show, on video, for The Nadas, who were friends of his. It turned out we had been at Iowa State at the same time, in the same department. As a child, he had visited the San Francisco Bay Area with his family and decided he wanted to live there (just like me.) He lived there at the time. I was intrigued.
I went back and hung out with Tracey for awhile longer. She said she wanted to be home to ring in the New Year with Jim. She didn't want to leave me alone but I was having fun at the party and wasn't ready to go yet. It was easy to blend into the large crowd of people dancing and celebrating.
I walked Tracey out then came back in and saw him. He smiled at me. Later, when they were getting ready to count down to midnight, some guy I didn't know and wasn't interested in turned to me. Just then, the guy I liked arrived with a bottle of champagne.
It was like something out of a movie. When the clock struck midnight, he kissed me. Then, he told me that he was invited to perform a few songs with the band. He invited me to join him backstage. I happily agreed.
Afterwards, we went to the band's after-party party. It was so much fun. The guy introduced me to his best friend (who had a young son who was close to Sam's age (Sam was two)) and I met an amazing percussionist who was also kind.
The guy was around for the weekend. We hung out a time or two more before he left town. The romance continued via phone, email and music we shared. He'd given me three Nadas CDs. I listened to them by myself and imagined the words were intended for me.
"We've got the world to see, you and me." "I miss you." "I could tell by her sweet smile, she was a very nice girl."
I was in love.
During the time we were "dating" The Nadas put out a new CD, Coming Home. Even though he was back in California, the guy encouraged me to go to the CD release party.
I went & had a very fun time at the Val Air Ballroom in Des Moines. (Co-worker pictured, not "the guy.")
The next day, I had tickets to go to the Iowa State men's basketball game, at Hilton Coliseum, in Ames. I'd planned to take Sam with me to the game. We headed up to Ames a bit early to spend some time on campus. We ended up at People's for lunch. The Nadas happened to be setting up for that night's Coming Home CD Release Party in Ames. They went out of their way to greet us & be kind. I remember the percussionist calling Sam a monkey (in a good way).
Mike Butterworth, of the Nadas invited me to come to that night's show. When I said I didn't have a babysitter, he said he could find one if I wanted to come to the show. I thought that was incredibly kind but didn't really think I would take him up on the offer. But, after exploring campus for awhile, I called him & said that if the offer still stood, I'd love to come to the show.
He made a few phone calls then explained that the person who had been their sound guy would be happy to babysit Sam so I could come to the show. I expressed surprise that the sound guy didn't want to come to the show. Mike explained that the sound guy was sick of the show. I got the sound guy's address & went over there w/Sam.
I wasn't sure I was going to actually leave Sam w/someone I didn't know but when we got there, I just felt completely comfortable & was confident Sam would be fine & have a good time. So, I left him & went to the party. It was great.
Before Valentine's Day, the guy I'd met on New Year's Eve, who had introduced me to these fascinating people, was interested in moving on. He thought he had a chance to have a relationship w/someone he liked a lot. I was disappointed but understood.
I kept going to Nadas' shows. I kept asking people to go with me. Often, my friends were home w/their husbands & I went alone. The ad agency where I was working was throwing a pep rally for the city of Des Moines. We discussed having The Nadas be part of that party. My "Coming Home" cd was taken to the client meeting where they pitched the idea. The client agreed wholeheartedly. The Nadas performed at the event & were asked to write a song for the pep rally, for Des Moines. They did. It was great.
In the meantime, I'd been offered a job in St. Louis. Sam & I moved there that fall. Once, when Sam was in Iowa, visiting his dad, I drove to Carbondale, Illinois to go to a concert by another band, a group who'd toured w/the Nadas. I was lonely & looking for something familiar, looking for kindness. I met my friend, Melissa Rose Ziemer that night. (She would later play a role in my meeting Cam.)
A year after leaving Des Moines, I was back, living & working there w/Sam. Again, my friends were busy w/their families. Again, The Nadas were playing shows, having parties. Again, I was invited to be part of the audience. My job at the time took me to Chicago about once a month. I was able to see The Nadas play in Chicago once or twice. I hoped it wasn't weird to keep going to their shows but their music is meaningful to me & I was so thankful to have something fun & social to do. I kept going.
Recently, I had a chance to tell Mike Butter- worth about how Sam & I moved to Chicago when Sam was 6 years old, how we met my husband, Cameron, there & how the three of us moved to San Francisco/Marin County, California when Sam was nine. Mike said, Sounds like a fairytale :)
While it does seem like one sometimes, there were lots of hard times along the way. I greatly appreciate the light The Nadas shown on those dark times. They helped me get through. I tell this story because I want The Nadas to know how much their music, their show can mean to people.
On one of their live CDs, when a reporter asked them what the band's name, The Nadas, means, they answered, "It means NOTHING." I want them to know that for this single mom who was trying to find herself, searching for happiness, "It meant EVERYTHING."
As I wrote about in my last post, while, initially, we thought my thymus was the problem. (Sam says my thymus is like the emperor from Star Wars. The supreme ruler of the most powerful tyrannical regime the galaxy had ever witnessed.)
So, how do we defend against the Death Star? Rebel Alliance spy, Dr. Lopez, believes something called immunomodulating treatments will neutralize the attacking space station. We're hoping these treatments will knock down my lymphocytes so my neutrophils and monocytes can grow.
Before they start the immunomodulating treatment, the anti-lymphocyte program, they want to do another bone marrow biopsy so they have a baseline and can make sure there are "no funny cells." (I'm not sure when they will do the bone marrow biopsy. He usually does them on Fridays so it could be as early as next Friday.)
As part of the treatment, I will receive an injection of some type of steroid. (We've already tried quite a bit of Prednisone and while the doctor noted that I responded to it somewhat, he said, I didn't respond well and my response wasn't permanent.) They want to use something more profound (his words).
A few days after they have been able to review the results of the upcoming bone marrow biopsy, they want to give me an infusion (an introduction of a solution into the body through a vein for therapeutic purposes) of something called ATG (antithymocyte globulin) for a few days.
I will also take a pill of something called Cyclosporin. I don't know much about these specific drugs or any potential side effects. Dr. Lopez says they have had good results using immunomodulating treatments. He said it usually really works for patients like me.
He said there are three possible outcomes. One is that everything will be better, meaning that after the treatment, I will have normal numbers. The second possible outcome is that things will be "better enough," meaning I won't have the numbers I had before I became ill but that they will be better than they are now. The third possibility is that the treatment does not change anything. He said having no response is the least common outcome.
Sam said the treatment was like Luke Skywalker in his X-Wing Fighter. With the aid of Han Solo, the spirit of Obi-Wan Kenobi, and the power of the Force, Luke Skywalker was able to successfully hit the small target, and triggered the Death Star's demise.
Yesterday, I had my second appointment with my third hematologist. Dr. Alfredo Lopez is a really likable guy. However, I have to admit that during the two months since my first appointment with him, there were times I was perplexed, annoyed, concerned and even angry with him.
Dr. Lopez kept telling me to just keep doing what I had been doing, from a treatment perspective. This didn't make sense to me since I was moderately to severely Neutropenic almost the entire time. (Neutropenia is what it is called when you don't have enough infection-fighting cells.)
Yesterday, Dr. Lopez explained that he and a team of hematological experts have reviewed my bone marrow. Apparently, all of them are in agreement about what it looks like. He said it looks like I have an immune mediated condition.
What does that mean? I'm still learning but according to Wikipedia, Immune-mediated diseases are conditions which result from abnormal activity of the body's immune system. The immune system may over-react or start attacking the body. Autoimmune diseases diseases are a subset of immune-mediated diseases.
(The idea that I might have an autoimmune disease has come up a few times. Autoimmunity is the failure of an organism to recognize its own constituent parts as self, which allows an immune response against its own cells and tissues.)
While I had been discouraged by my number of Neutrophils (a specific type of infection-fighting white blood cell), Dr. Lopez was encouraged by my total white blood cell count. He said it was super.
He said my counts are at a functional level and he believes this is because I have had a nice response to Neupogen (the medication that was supposed to help me make white blood cells).
He's also very encouraged that my condition has stabilized. (I was sick before. I haven't been sick lately.) This has been encouraging to me too.
However, Dr. Lopez says there is something going after my infection-fighting cells and knocking them down. He said this thing thinks there is something wrong with my infection-fighting cells (which is not the case. I just have less of them than I should.)
He stressed this point, that there is nothing funny, sick, weird or abnormal about my infection-fighting my cells, several times, saying it was key and really important.
Even though the quality and function of my infection-fighting cells is good, he said there is a mother cell driving them out. When I was explaining this to Cam & Sam last night, Cam said it was like the Death Star was attacking me. Death Star: an instrument of terror posing threat of annihilation...
So where is my Death Star? Dr. Lopez thinks it is my lymphocytes. Lymphocytes are a type of white blood cell that plays a large role in defending the body. They make antibodies that attack bacteria and toxins or even attack body cells directly when they have been taken over by viruses or have become cancerous.
Dr. Lopez thinks mine are confused and attacking my Neutrophils. So what do we do about it?
As most of you know, I have been being treated for a problem with my immune system since last fall. I wrote about the early stages of my illness and treatment on this blog:
To summarize, in August of 2009, I had a bacterial infection that wouldn't get better. In September, my blood work showed that I had almost no infection fighting cells. I was told to go to the emergency room. Initially, the doctors thought I had Leukemia. They did a bone marrow biopsy but did not find Leukemia. They kept searching for the cause of the problem.
A CT Scan revealed that my thymus gland was larger than it should be. They were fairly confident that this thymoma was causing the problem. Four different doctors said it needed to be removed.
In October, I underwent a fairly major surgery called a mini-sternotomy where they cut through my breastbone to get to my thymus (located under the sternum, near my heart and lungs). It was removed. (They call this a thymectomy.)
I had been told recovery from the surgery would take some time. (They said I would have pain for about six weeks. I ended up having pretty major pain, requiring pain medication, for four months. Physically, I have felt much better since mid-February. I do still have a bit of pain for which I take Motrin daily.)
After the surgery, I was told not to push, pull or lift more than five pounds for at least three months. At my three month post-op appointment, they said I should wait another three months before doing any weigh-bearing activity. Because our insurance changed, I haven't had my six month post-op appointment yet but was told yesterday that I could resume normal activity, within reason. If it hurts, don't do it.
Back in October, I was also told the problem with my immune system would likely be resolved fairly soon. They said my numbers would likely be better within 2-3 days after the surgery. They weren't.
For the past six months, I've been on various medications to help me produce infection-fighting cells. Sometimes, I had enough. A few times, I had way more than I needed. But, disappointingly, I haven't been able to maintain an adequate number of infection-fighting cells consistently with or without medication.
Yesterday, I had my second appointment with my third hematologist, Dr. Alfredo Lopez. He outlined a new plan. I'll write about it in another post. As always, thanks for caring.
Cam and my dad are at the 49ers game. I have a little time to write.
I woke up in the night last night around 2am and almost got up to work on finishing the story but decided to stay in bed and ended up sleeping which I figure everyone would prefer.
Thanks for allowing me to be so self-absorbed while I process everything. I feel like a brat when I feel sorry for myself because I am so loved and have so many blessings and this is supposed to be treatable and everything but Cam listened to me cry this morning about how I don't want it.
I want to be done feeling bad rather than walking into a procedure which sounds really invasive and will leave me with a wound. According to the surgeon, I will be sore for a month and will have to avoid strenuous activity for three months. I'd rather not. I'd rather just be well but this is where we are. Thanks again for caring.
So, how did we get here? On Tuesday, 9/22, the hematologist was concerned by my blood work from the previous week. I implored him to look at my blood work from the day before before insisting I go into the hospital. I told him how much better I was feeling and hoped that would be reflected in the blood they'd just taken from me. He agreed to get those results and give me a call back. When he called that afternoon, he said my levels were still very concerning. I think he may have said they were the lowest levels he'd seen. He really thought I should go to the emergency room.
I spent some time checking with my insurance to see which hospitals were in our network to make sure I could be admitted into the hospital affiliated with the emergency room I would visit as the hematologist said he thought I would have to be in the hospital for a few days until they figured things out.
I chose to go to the ER affiliated w/the hospital affiliated with the hematologist who was sending me to the hospital. Once I knew where I was going, I also arranged to have all of my blood work sent to that ER. I didn't want to show up and have them act like it was unnecessary. I still remember the first time I went to the hospital when I was pregnant with Sam how they told me, "You don't look like you are in labor."
When I arrived at this emergency room, they did look at me with that, "Why are you here" face but once they looked at my blood work (and took more) they were saying things like my levels were "critically low" and that it was an emergency. The doctor on call with my medical group came in, said something was attacking my bone marrow, started tossing around the word Leukemia and saying how I would likely have a bone marrow biopsy the following day. I started to get scared.
I guess Cam had read more than I had about the reasons someone might have very low neutrophil levels and was already concerned about this possibility but I wasn't until then. Up until that point, I thought all of the wacky blood work was a result of the infections I'd been fighting and once we fixed those, my blood would return to normal. My doctor was testing my blood for scary sounding things but she kept sounding like she didn't think I had those things and that we were just ruling them out. This was the first time someone sounded like they expected I had something scary sounding. I didn't know much about what it meant to have a bone marrow biopsy but it sounded like it was going to hurt.
Despite looming threats that I might have a scary illness and would most likely have a painful procedure ahead, the thing that was bothering me most was what I now think is called a peripheral intravenous catheter. I called it a needle stuck in my arm. The nurse who inserted it explained that it wasn't a needle but a tube. Regardless, without talking with me first about what they were doing or why, they had stuck something into my arm, without asking permission and they wouldn't take it out. It made me angry. I didn't want it and didn't know why I needed it and I wanted it out. One doctor listened but another said it was necessary as they expected I would be getting antibiotics via an IV.
They took an x-ray of my chest then brought me into my hospital room. Cameron and Sam had been with me but ran out to grab some dinner for all of us. Then, around 9pm, they headed out. Sam had school the next day and had been out of school for several days already (one because of family visiting, two for the weekend and two for teacher in-service days).
I called my parents to talk with them about what was happening. I cried to them about how my day and outlook on things had been turned upside down in that emergency room. They acknowledged that it sounded scary and upsetting. My mom said I sounded tired and encouraged me to sleep. I was waiting for them to come hook me up to the IV (and give me some medicine to help me feel better about the whole situation which had created a lot of anxiety all of a sudden). I didn't want to go to sleep yet. I called my brother who also listened to me cry and joked about how he wished he were there to make people do things for me and make them listen.
Finally, the really nice male nurse came back into the room to get me set up. He asked questions like he was starting from scratch and I didn't understand why the information I'd shared in the ER downstairs hadn't been given to him but it hadn't. I repeated my story for him. Finally, I was ready to rest. I woke up that night at 1:30am and again at 4:30am. Then, I slept until 9:30am when I met the hospitalist, an internal medicine doctor who would be responsible for my treatment while I was in the hospital. He listened to me express my new found anxiety and discomfort and displeasure and agreed to do what he could to make things as comfortable for me as possible.
Cameron had canceled his classes and showed up in time to hear the hospitalist say that he wasn't sure I had Leukemia. I don't even remember exactly why he thought it was legitimate to say this to us but he said that if I had Leukemia, he'd expect some other levels to look different than they looked. I tried not to pin too much hope on this perspective but it was somewhat comforting.
To make me feel better, Cameron had brought a big, floppy stuffed dog that his mom sent as a present for Sam. I did hold and snuggle that dog sometimes during my stay. he also brought some framed photos and a ceramic turtle for the little table I faced from my hospital bed. Those little touches meant a lot. We hugged lots, cried some and I rested a bit.
Shortly after noon, the hematologist came by to do the bone marrow biopsy. He was calm but straightforward and expressed what he saw as the very real possibility that I might have Leukemia. He explained the procedure and while it sounded fairly awful he said that he would make the area numb and that the only think I would likely feel was the shot to numb things and then some pressure for a few minutes. He said the whole thing should only take about 10 minutes.
Since I'd had time to prepare for the procedure, was rested, was medicated, was supported and knew it would be over soon and sounded necessary, I was ready. As ready as you can be for something like that I guess. Cameron held my hand the whole time. I did squeeze his hand quite a few times but mostly in a clenching, "I'm scared" sort of way, rather than a wrenching "this really hurts sort of way." (I remember giving at least one of those when Sam was born.)
When it was over, I posted, "When I wrote about new experiences ahead, I had no idea one would be a bone marrow biopsy. It's over and was tolerable with Cam holding my hand. Now we wait." Cam had made arrangements for Sam to spend the night at his friend Leo's house that night so he could spend the night with me. I'm very thankful he was able to be there and that Sam was with our good friends.
That afternoon, while Cam was out getting some approved snacks for me and some lunch food for himself, Erika, a friend of mine from CASA, stopped by. It was really nice to see her. I greatly appreciated her caring. She could only stay a short while but offered to come by the next night and bring dinner. It was such a lovely offer, I said, "Great."
That evening, to pass the time, Cam & I watched the Clint Eastwood movie, Gran Torino. I thought it was worthwhile. That night, despite them coming in five times in two and a half hours to do some necessary thing, we both slept fairly well.
The next morning, Thursday, 9/24, I felt good. When he'd been there, the hematologist said that on Friday would could start negotiating about when I could go home but I gave the poor hospitalist a hard time that morning, asking if I couldn't wait for the test results at home. He said they weren't ready to let me go yet. I asked if they could at least take the thing out of my arm. He said not yet, as they still wanted to give me more IV antibiotics. He did say I could take a shower and put on some regular clothes.
Cam spent the morning with while I got my shower then went home to grab some lunch, take his own shower and pick Sam up. They were going to come back and spend the evening with me. I was excited about feeling well enough to hang out with them and for my friend, Erika to come by with her yummy food. (She's a wonderful cook.) Then, my throat started hurting and I started to get scared again. On the outside of the door to my room, there was a big stop sign, warning people not to come in if they might be sick, since I was so vulnerable to infection. Now, I was worried that I was getting sick with something I might not be able to fight. I ended up asking Erika for a rain check, explaining that I needed to rest.
Cam & Sam arrived but when I realized Sam wasn't feeling well and had a stuffy nose, I had a hard time enjoying them being there and started to be paranoid and scared. I didn't want to be afraid of getting some cold from Sam but I was worried. The hospitalist came in to talk with us then and said that he didn't think I could catch strep throat with all of the antibiotics they were pumping into me and that he wasn't as worried about me catching a viral infection from Sam as they were about me getting a bacterial infection. I chilled out a bit.
Before he left, the hospitalist had told us the good news that in her preliminary look at my bone marrow, the pathologist had seen the absence of the cells I was missing but hadn't seen invasive cells like they would expect to see with Leukemia. This was great news but I still wasn't feeling well and they weren't saying I was in the clear yet. I took some more meds to make me feel better and pretty much crashed on the guys.
We'd agreed that Cam would take Sam home that night and spend the night with him. Cameron's brother, Eric was coming in from Chicago for his first visit since we've lived in California. At one point, they talked about canceling the trip but I didn't want to be the reason these brothers didn't have time together. I didn't want to be that sick. We decided that Sam could spend the night with me in the hospital on Friday if I had to stay. He'd expressed some interest in sleeping at the hospital earlier and I'd been missing him so since I didn't have to worry about catching anything from him, it seemed like a good plan.
When the hospitalist said they didn't see Leukemia right away, he mentioned that there was another thing it could be. He made it sound unlikely but said that there was a possibility there might be something non-cancerous in my chest that was causing the problem. If that turned out to be the case, it seemed like it would be fairly straight-forward to take the thing out. He didn't seem to expect to find anything but wanted me to have a CAT Scan the following morning just in case. I said sure, joking that it would be another new experience.
(I did have something like a CAT Scan when I was in 6th grade and my parents took me to an ear, nose and throat specialist to see why I couldn't smell. They said it might have been a brain tumor. It turned out not to be a brain tumor and said maybe I damaged my smell receptors in some early fall but also said some people are just born that way.)
I got a ton of sleep that Thursday night and by Friday, 9/25, I was really ready to go home. They took me down for the CAT Scan where they pumped some crazy fluid into my IV to make my insides show up on the CAT Scan. I laid on a table that moved back and forth under this big arched tunnel. I had to hold my breath a few times and we were done. The guy who transported me to and from the CAT Scan said I didn't look sick. I said that I didn't feel sick but that they were worried about my blood.
I was sort of back to hoping they wouldn't find anything and that it was just a fluke. I'd heard that sometimes people's levels just go back up and they don't know why. That would have been alright with me.
That afternoon, while Cam and Sam were on their way to me, the hospitalist came in with mixed news. He said that in further study of my bone marrow, the pathologist had not seen Leukemia. He said they were sending it off to a pathologist who specializes in this type of medicine for a closer look. In the meantime, they had found something they wanted to investigate. They had seen something on my CAT Scan.
The hospitalist said that finding out that part of my thymus gland was enlarged was not at all what they expected. He said that Leukemia would have been the most common explanation but that since they didn't find Leukemia, they wanted to find out more about what was happening with my thymus. I didn't know what this meant at the time and realized that I might have to have something removed but I have a friend who has had her thyroid removed and I think I thought he was talking about something like that. I would worry about it later.
All I knew was that they didn't think I had cancer, they were letting me go home, they were going to take the thing out of my arm and I felt well. I was free for a weekend with my family. I was happy.
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.
