Sunday, October 04, 2009

Chapter 4 - Trip to the ER. First Hospital Stay.

Yesterday afternoon, before the wind became brutal, I had fun flying kites with Sam and my folks.

Later, we went out for yummy pizza with Cam.

I've been enjoying the sunshine today and am glad I got to play Qwirkle with my mom & Sam this morning. While he and I played respectably, she came from behind and destroyed us. Now, my mom & Sam are at Discovery Days at the Romberg Tiburon Center for Environmental Studies.

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.

To be continued...

Saturday, October 03, 2009

Chapter 3 - Music, New Antibiotic, First Blood Work

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...

Friday, October 02, 2009

Chapter 2 - Blue Green Algae? Night Chills Begin.

I hope I wasn't too melodramatic yesterday. I didn't mean to leave anyone wondering or worrying. I wish I could sit and talk with each of you about what's been happening to me but since I can't, thanks for allowing me to tell the story at my own pace.

So, I left off as we were embarking on our family camping vacation. Cameron did a lovely job of documenting our trip on his blog. Let me see what I can add, in light of my current medical condition, since that's the story I'm telling.

Sunday, 8/16, I enjoyed being out of the house, in the sunlight and seeing new parts of northern California as we drove farther north than we ever had before. At one point, while we were listening to an audio book, I feel completely asleep in the afternoon sun, post lunch. That didn't seem remarkable at the time but worth noting now.

I was impressed by the area around Humboldt Redwoods State Park and our secluded campsite was beautifully nestled among these giant trees. I was happy to be there but tired. I would have been alright staying at the campsite (except the mosquitoes were brutal there) but Cam wanted to walk down to the river. Sam & I wanted too too so we did and had a lovely little dip in the river (despite the public health warning). It didn't say to stay out of the water, just to avoid contact with the blue-green algae and their toxins. We tried not to get water in our mouths and to wash our hands before eating. I took a shower that night.

Because I had been sick, I hadn't done the research about the areas we'd be visiting that I'd intended to do. We booked the campsites months in advance with the full intention of swimming being one of the main activities of our time in the area. We didn't have internet access so I wasn't able to read about the dog deaths, etc. There were signs posted but we just crossed our fingers and went for it. Since none of us experienced the obvious gastrointestinal upset they alluded to over the next couple of days, we seemed to have escaped relatively unscathed.

I didn't think to mention our exposure to blue-green algae to my doctor until after they started finding trouble with my blood work on 9/17. I mentioned it to my primary care physician on Monday, 9/21, to at least two doctors in the ER/hospital when I was being admitted on 9/22, to the internal medicine doctor who treated me while I was in the hospital and to the hematologist. None of them seem to have thought it of much consequence. I don't think I bothered to mention it to the thoracic surgeon on 9/30.

As I type this, I'm thinking maybe I should bring it up again but so far, none of the doctors I've been working with seem to think this is part of my current problem which is great because I think the day we spent playing in the river was my favorite day of the vacation. The area where we spent the most time had flowing water which was supposed to be helpful for avoiding the algae. There is a picture of me eating after having swam in the water. I don't think we had any hand sanitizer with us. (Yes, Heather Zona, I would have been happy to have your Purell with me that day but I didn't.)

The next day, we drove to an easy path where we had an easy walk among some of the tallest redwoods. I liked the easy part but the area was really battered from misuse. Cam drove us to another area where there was a path he thought we'd like. We had a picnic in the shade then crossed a bridge over a dry riverbed and walked towards what Cam assured me was a lovely path in the shade. (Did I mention it was in the 90s while we were at Humboldt?) I was up for crossing the riverbed but when we couldn't find access to the path and when Cam proposed we walk along the river for awhile searching for it, I just camped out in the shade of some trees and let him walk along by himself. I didn't have the energy to even talk about how I didn't have the energy to walk a long distance and maybe not find a path.

I guess he found it and had to walk the long way back to us again and convince me to leave the shade and follow him. Once we were in the shade, among the giant trees in this somewhat secluded cove, I was happy again. We happened upon a path down to a creek. Cam proposed we walk along the creek for awhile. Since it was shady and the water was cool, I was happy to wade along at a slow pace for awhile. When our way was blocked by fallen trees, we hung out and enjoyed the area before walking back.

We made it back to the car in mid-afternoon with a lot of the day left to kill. I was starting to like the tongue-in-cheek suggestion Cam had made about going to see a movie in a neighboring town (about 45 minutes away) but we were in the redwoods and were supposed to be enjoying them and we could see a movie anytime. So we drove around a bit looking for areas where I was willing to hike. I felt lame feeling so tired but I was tired. When Cam proposed just driving along the Avenue of the Giants for awhile in the AC with some music, that seemed like a lovely compromise. We were able to appreciate the beauty of the redwoods while sitting in comfort.

I wanted to stop for ice cream but knew Cam had packed lots of nice food for us and that it was waiting for us back at the campground. Eventually, we decided to stop there for some food, I insisted upon "linner" around 4pm as I felt famished and like I needed more than a snack. When we decided to go back, we talked about going swimming again but everyone was happy resting at the campsite. Cam read aloud to us from a book we were sharing and I hit the sack early.

The next day, I woke feeling fine. I slept well every night at Humboldt (except for waking up in the night having to go to the bathroom and not wanting to trek across the campground in the dark to the bathroom even though the stars then are nice). Cam & I packed up the campsite while Sam caught a few more zzzs in his tent. When he awoke, we scooped him up and headed off.

I was ready to move on and happy to see new territory. We had breakfast in Eureka then enjoyed a lovely drive along the Trinity National River between Eureka & Lassen, our next destination. The white water rafting opportunities we passed along the way looked fun. Again, I was happy to be sitting, resting in the car, seeing beautiful nature while basking in the sun but not exerting myself. I think I was still taking Motrin and running a fever pretty much this whole time but my mouth was much better.

Cam had talked about hoping we could get a hike in that day. As we were planning, I liked the idea very much but as we were approaching the park, the idea of laying low was more appealing. I felt lame being so tired on our vacation but when we found out one of the trails was closed, I was glad that Cam was satisfied with the idea of a swim in the lake at our campground.

We set up camp then headed over to the lake. The water was cool but refreshing. We all enjoyed the swim. (I was happy that there were no posted warnings about getting in this water).

When we returned to the campground, we realized that we'd accidentally left the flap open on our tent. It was full of flies which was a huge bummer. They were all congregating at the top and we weren't sure how to get them out. We turned the tent upside down and shook it but that didn't seem to help.

I decided to make the 13 mile drive to the campground store to pick up a few supplies (Sam wanted to roast wieners) and to take a shower. When I returned, I was happy to hear that Cameron had figured out how to get rid of the flies. He had turned the tent so that the door was at the top and freed flies happily flew away. This thrilling news reminded me that I'd left the windows open in the car. I went back to it and climbed in the passenger side, put the keys in the ignition and turned the car on just enough to get power to close the windows. At the same time, I was still talking with the guys about dinner, my shower and the success with the tent. I managed to close the door w/o turning off the car or retrieving my keys. Woops.

We were 13 miles from the nearest working phone. I talked with the camp-
ground hosts who said a ranger might come by in the morning or they said that could give me a ride to the store the following morning after 9am. They were not very enthusiastic about resolving the problem quickly and it was a very vague plan. Despite the new dilemma, we enjoyed our evening by the campfire and decided we'd work on finding a solution in the morning.

That night, in the tent, I woke up shivering. My teeth were chattering and I couldn't get warm. I found some Motrin and some water and a few minutes later, when my fever had broken, I was warmer and able to sleep again. The same thing happened the next night and the next. I now know that shivering fevers with chills in the night are a sign of a bacterial infection. I was seriously ill but thought the issue was the change in elevation effecting the temperature. Plus, we were on vacation with limited time to enjoy the wonders around us and without ready access to medical care. There didn't seem to be any reason to go to a hospital and the closest real town was again about 60 miles away. Trying to see a doctor would have likely been an all-day ordeal. One I decided wasn't necesesary.

The next morning, I was able to hitch a ride from some other campers who were going to the campground store. I used the phone to call Geico who thanks to our emergency roadside assistance plan was happy to send a tow truck up mountain roads from Redding. Google maps says Redding is an hour away. I think it took that tow truck closer to two hours to get to me but really, the issue was resolved remarkably painlessly. Honestly, I was happy to have the time to sit in the shade and read a book rather than trying to hike morning, noon and night.

Jeremiah, the very nice tow truck driver, told me the very sad story about why one of the trails we'd wanted to hike had been closed. Suddenly, all of our problems seemed like very minor ones again.

He had the car running in no time and we were off to hike Bumpass Hell. Cam describes this surreal place beautifully. I will talk about my experience physically. I did need to stop frequently, even on the fairly flat parts of the trail and struggled to climb up back up the mountain at the end of our hike. I knew I wasn't feeling 100% but I also thought I was just really out of shape. (Surprisingly, there are some really nice pictures from this hike. It was probably my favorite part of our time at Lassen.)

We were only in the area for a few hours then we were back in the car and I was happy again to be seeing beautiful things while sitting. We checked out some easy-to-get-to geothermic activity then went to a visitor center to relish the air conditioning (it was a bit warm at Lassen too). After looking at a few exhibits, I found a chair and was happy to just sit there for as long as my adventurers would bear. I would have laid down if there was any place I could have gotten by doing so.

Cam proposed another small hike to another lake that was close to our camp-
ground. I said sure because I loved the idea but I was worried about my ability to pull it off. I fell asleep in the car on the drive back to the campground. When we got there, I got out of the car and walked straight to the tent w/o a word and fell down exhausted. I was wiped out.

Cam & Sam decided to swim at the nearby lake again. I felt bad that we hadn't gone on the hike to the other lake but I just couldn't do it. After resting for about an hour, I was able to walk over to near where the guys were swimming. I'd taken more Motrin because I was still running a fever and felt chilly. I didn't have the energy to join them for a swim this time.

Cam was ready for a break but Sam was trying diligently to free a log from some mud. Rather than walk all the way over to where he was working, I made him walk all the way over to me and then suggested he get another kid to try to help him. When that kid declined, I eventually got up and helped but it was really a struggle to exert that much energy. I was feeling lame again but Sam & Cam were sweet to me.

The next morning, after another night of shivering where I pulled on Cam's stocking cap and socks and chattered my teeth until the fever broke, Cam suggested we head home a day early. I was thrilled at the idea of having a bit more time to recouperate at home before heading back to work. When he woke up, Sam agreed to the plan. After two weeks of camping, he was starting to miss his screens.

Cam wanted to do one more hike before we hit the road. I had only packed my Birkenstocks and this trail called for hiking boots because of the loose volcanic rock they'd be climbing. This gave me an easy way out of climbing a volcano. Instead, I was able to sit and lay in a park in the shade next to a lake and read for hours.

On the way there, we saw a mama bear and two bear cubs. We also admired Lake Shasta in the distance. I was very happy they were able to do the hike and very happy to get out of it. Before we left the last part, I did have a bit of stomach trouble, the first I'd noticed, but we were heading home and that in itself made me feel better.

We broke up the drive by stopping for sushi & a movie. I was able to check out what it was like to have internet access on my phone. I'm sure I slept some in the car too.

The next day, a Saturday, I just crashed. I don't think I spoke with anyone. I remember being cranky because Cam wanted to go out to eat for lunch when he'd said we could rest that day. Gosh, I was sick if the idea of going out to lunch was too exhausting, eh?

My FB status from August 23 says, "Mary Maddux is easing back into things very slowly." There was a CASA kid's event that day at Angel Island and before I'd gotten sick, I'd hoped that I'd be able to go to the event as I had such a fun time last year and was excited about the opportunity to spend time with some of the volunteers and the youth I was working with at the time. My boss had said not to worry about trying to go to the event. She had said to do my laundry, rest, etc. I think I finally spoke w/my folks & my brother about the trip & their upcoming visits to California.

Speaking of my folks, they landed at SFO a little bit minutes ago and will be on their way to me shortly. I may not get to write much in the coming days as I want to spend time with them. I'm sorry for those of you who want to know more right now but please just know that I want to know more too and that there is still much I don't know and I have my hands full processing it. I will keep talking as I am able. Thank you for continuing to care.

To be continued...

Thursday, October 01, 2009

What's the Deal? Chapter One - The Canker Sore

"What's the Deal?"
"What's causing this?"
"Have they figured it out?"
"How do they fix it?
"Anything I can do?"
"Did they find out what was up?"
"What the heck is going on?"
"Have they been able to "rule" anything out?"
"What is going on?"
"!!! What is the diagnosis?"
"Fill me in when you get a chance." (photo credit)

These are actual quotes from real friends. I'm so thankful for each of you. I've tried to get back to people as best I can but have honestly been so exhausted by talking with doctors and going to appointments and having tests and thinking about all this stuff that I have barely had energy to talk with my family. Plus, we didn't know what was up.

Yesterday, the thoracic surgeon seemed to think he knew and has what he sees as a fairly simple, straight-forward solution. I've been wanting a solution so that's great but it involves cutting through my breast bone, days in the hospital and months of recuperation.

He's confident about what should be done and ready to take action. The other doctors I've been working with recently seem to agree with his assessment. I'm inclined to go along with the plan.

Although, I'd rather just be better and not have to have surgery or give myself injections or take medicine or avoid crowds and fresh fruit and flowers but they say I'm currently very vulnerable and I don't want to get sick again or get sick with something I'm not able to fight. (photo credit)

We've been joking about "death by grape" but yesterday I heard that if I ate a bad strawberry or some unwashed lettuce and got salmonella it could be "lethal" so maybe it isn't really funny.

I'm still being vague. I know. Still processing but maybe if I try to tell the story that will help. Here goes...

Let's flash back a couple of months to early August. You can use this Brett Dennen song as a soundtrack.

I was enjoying the warmer weather, riding my bike to the ferry for work, eating red pears and fresh figs, having margaritas with friends after work, riding home in the sunset. I was listening to music, working out with the Wii Fit, roasting kale and laughing at silly movies. In response to the question, "What is your biggest annoyance right now?" I answered, "I'm feeling peaceful right now. Ask me later."

On August 8, we hosted a birthday party for Sam and survived twenty hours with six 12 year old boys relatively unscathed. It was even fairly enjoyable. I don't remember being tired and stayed up past 1:30am. Our bikes were stolen, which was a bummer but whatever, that's part of life.

We dropped Sam off for a week of overnight kayak camp and I was feeling like a good mom. Cam & I saw Tim Linsecum pitch at a Giant's game. I was happy, relishing in this wonderful life we're living.

On August 12 (a Wednesday), I went home sick from work. I hadn't felt that great on the way in but I had work I was supposed to be getting done before vacation. I was supposed to be in court that afternoon & I had a meeting with my boss that morning. I really felt it was important and necessary to be there.

After our meeting, my boss said that I should go home as it was obvious that I wasn't feeling well. She said the work could wait and that she'd cover court for me. She said she didn't want me getting anyone else sick and that I should rest. I was running a fever, one of the lymph nodes in my neck was swollen & I had the beginnings of a canker sore in my mouth. (I don't get them normally.)

The first bus home doesn't start running until mid-afternoon and I couldn't wait. I called Cam insisting that I needed to go home right away. He swung by my office so I could drop him back off at work and drive myself home. I was so happy to be home.

The next day, I decided to stay home and rest. I didn't remember ever having had a sore like that one before but figured people get them all the time and that it shouldn't have been a big deal. I just stayed home on the couch in my pjs, taking Motrin, resting and thinking I would be better the next day. (photo credit)

But in the morning, I was worse. The sore on the inside of my bottom lip was bothering and upsetting me. I couldn't smile or eat or talk or close my mouth properly w/o it hurting. I sat there with my lip stuck out. Cam said looking at me made people uncomfortable. My boss continued to be supportive, encouraging me to "please stay home."

Missing work when you are sick is one thing but suddenly, I was facing the really troubling prospect of being sick during our vacation. I got some over-the counter canker sore pain relief medicine. It numbed the pain which made things more tolerable.

That Saturday, was supposed to be the day of packing, planning and prep for our week-long camping trip. I spent most of it on the couch while Cam got things ready. He really is wonderful.

That Sunday, the 16th, we headed out. All the rest of the past few days had helped a lot. I was armed with my Motrin and my Benzocane and actually thought the sore seemed finally to be starting to heal. Regardless, I was going to do my best to put it out of my mind and enjoy this time together as a family.

To be continued...