Day 288 - run, view art and identify your infection

I checked at about 1:30 and happiness! my culture was back--sensitive to methicillin, but not to other pcn's and sensitive to every other antibiotic. The small print at the bottom said it should be sensitive to pcn+beta lactamases (i.e., the augmentin I got earlier this month), but perhaps not and perhaps that is why it didn't vanish with the disgusting sputum I was coughing up when I took the augmentin. I suspect it is time for another round of antibiotics, but fortunately since there are so many other alternatives, not vanco. You may recall that vancomycin seemed to cause fevers before. It was never 100% clear that it was the vanco (although the 1West nurses and I were completely convinced) and it is not 100% clear that my immune system now that it is not leukemia/neutropenia disregulated would respond in the same way, but if it's all the same to everyone, I'd like to hold off on finding out.

Here are the last of my New Orleans pictures. The New Orleans Museum of Art is really a fabulous museum. They're open late on Friday night, had a pianist and a singer, sold drinks in the lobby and had a fair number of people there. You can get right up close to the works, there were no crowds by the art (there were by the piano) and they had a lot of really great stuff including this Modigliano that I took for Terry who really likes him and the de Largilliere below that I just loved. I had never heard of him before, but something about the self-portrait really speaks to me.

I didn't see a security guard in the museum the whole time we were there.

I love how informal this guy looks and feel like he is about to start saying something to me about the canvas behind him that he is gesturing to.

Watch this space for upcoming shocking pictures of the flowers that are starting to grow in my front yard!
My other happiness for today is that I managed to get myself out on the shoulder of the road for 5K today. My speed is about the same as pre-leukemia even though I had to walk a couple times because I got tuckered out. I think this means that overall I might have somehow sped up! Perhaps those blasts were weighing me down.
I am so thankful that I can run. I am hopeful for more running soon. I am hopeful for you to be able to engage in your favorite outdoor activities too.

News unrelated to Agnes

Three times since New Year's I have gotten mild cellulitis of the nasal tip, just to the left of the tip of my right nostril. Not a huge patch, but it doesn't take a very large patch of bright red or even pink in that location before one feels quite noticeable. It goes away with some combination of neosporin and on its own. It recurs each time I get a runny nose, most recently this week. Three's the charm so I called my doctor's office to ask what they thought I should do. (Look how good I'm being! I *called*; I *asked*; I didn't just do what I thought I should.) They agreed with what I thought and asked me to stop by and swab my nose. This morning, it was growing staph aureus, sensitivities pending. Drat. Hoping for M*S*SA. I'll let you know.

I am thankful that I have not had any worse problems with resistant organisms. Given that my ANC was 200 when I was diagnosed and I was hanging around in a hospital, that is a huge piece of good fortune. I am hopeful for antibiotic sensitivity and that my port wound continues to heal nicely. I hope for you that you can avoid resistant organisms effectively.

Day 287 - return of the basset

I think I might be getting old because I am having a harder time sleeping in even when I am tired. I just automatically wake at 0600 or so without an alarm and can't seem to get back to sleep. I have heard this complaint from many an elderly woman. I don't mind because one of my favorite things to do is lie in bed and stretch a bit then roll from left to right to left and think about stuff and yawn and I could do that easily for a couple of hours if the house is quiet. I think I may really have fallen asleep, but who knows? I didn't feel asleep.
I was halfway up a narrow steep flight of stairs. They were dusty and at the top was a little landing where the stairs turned around and a huge round window with sun pouring through. I don't know why, but I was really afraid to go up the stairs. I could hear the sound of a dog's nails scrabbling around on the floor above me.
"Agnes? Is that you?"
No answer.
I lifted one foot to the next riser and shifted my weight up. Other foot. I felt each step in exquisite detail, the way my shoe felt when it hit the stair, my thigh muscles contracting to lift up my weight. Even though I thought Agnes was up there, I was terrified. I don't know why. I could feel my heart pounding in my chest and my neck. When I got to the top, it wasn't a landing but steps that curved around and the ceiling was really low and I had to lean way over. There was a very dusty, dark room at the top and Agnes was there!
"Agnes, I'm so happy to see you! Why didn't you say you were here?"
"That wouldn't have been honoring your fear."
At the time she said it, I knew just what she meant. Now, I have no idea.
I sat on the floor and scratched behind her ear; it was so incredibly soft and then I pulled her into my lap. She scrambled out and sat facing me. I couldn't figure out why she did that.
"Agnes, tell me what's going on!"
"I'm a dog," she said, "I can't talk."

So, what, I wonder, exactly am I supposed to make of this? I am doing some new (and, yes, kind of scary) stuff in a couple domains in my life that I don't really want to talk more about. I'm sure that brought her out. Was I supposed to find her visit encouraging? I wish I understood more what "honoring your fear" might mean.  I found it more helpful when Agnes provided me with more direct advice, but it was nice to see her. I had wondered a little bit if she would make a repeat visit and certainly when.
And, really, isn't that maddening? "I can't talk." Yeah, and I can't type. Geez.

Day 286 - being cross about the health insurance blues

You may recall my (tiny) insurance troubles. The first was that when I took an ambulance trip, the insurance company sent a check to me for half of the fee and I sent the check on to the ambulance company, then the insurance company paid the other half of the fee. The ambulance company was happy and said they had been paid, but the insurance company said that I needed to pay them back half of the fee. It turned out when I called them that the rep said that they might need me to send them a check for that amount because they had made an accounting error and put the amount in the wrong column and she wasn't sure if they could correct their error. I asked her to work on figuring out how to do fix it. A couple weeks later we got a letter telling us that we did not owe them any more money.

As for the more important one, my disability, no progress. I sent an email to the person who has been helping me with disability stuff and she sent me an email saying that she had sent it on to the new case manager and I'd hear in 3-5 days. Eight days later, I sent another email asking what the status was and she said I'd hear soon. Monday I will ask for the case manager's phone number. I really only care about it in the case that if I relapse I don't want to be denied disability because Dartmouth goofed up this episode. If some one could assure me that if I need to go out again, there won't be any problems, I'd pack up my issues and stop darkening everyone's inbox.

I recognize that my insurance troubles are so simple and miniature compared to most people with serious illnesses and that I have enough energy to deal with them and am not barfing or in pain and yet still they're a nuisance to deal with. I am in awe of people who have to deal with actually being disabled *and* insurance screwups *and* whose insurance is more complicated than mine so things go wrong constantly. (Mine has been pretty simple. Work for DHC, get almost all my treatment through DHC. Insurance is through DHC. Everything I need is in network and I do not need to cough up any money besides my copays and deductables.)

I am thankful that I have good medical insurance and hope my family and I always do. I wish that for you, too.

Day 285 - the leukemic and not clearly thinking

I've had some really nice patient interactions recently. I've seen a patient so delirious he was requiring a person to sit with him all the time clear up enough to tell me he really didn't like Barack, but "he's the president so there's no use complaining about it." I had an actively dying woman squeeze my hand on request after her family had given up hope of being able to hear anything else from her. I really like my job and the things I get to participate in every day. I am tremendously lucky.

I saw another delirious patient today (that is evidently my theme for the week). She was much less delirious and could have a conversation and in fact doubted that she was confused at all even though people seemed to be thinking she was. I don't usually talk about myself with patients, but I told her that I had had cancer and that when I was getting chemo and my husband told me I was not thinking well enough to drive that that was really the worst thing for me. The more I tried to prove to him that I was thinking well, the more I sounded like a person who was not thinking well. She agreed with me and I felt her soften a bit and felt like she was willing to listen to me where she had not been so much before. I told this story to her nurse whose response was "Even you with all you know had a hard time with that?" There are some things that education and knowledge do not protect us from. I think for me the fact that so much that is important to me in my life happens in my head made the whole experience of not thinking well even worse. Evidently some famous person has talked about "a million dollar experience I wouldn't pay two cents for" and that is such a good description of the leukemia. I never understood how horrible not thinking well would be and I was just subtly impaired. I cannot imagine how scary the world must be when everyone around you seems puzzled that you are talking about the basement of a concrete slab building.

This is a street in the French Quarter and don't you tell me otherwise.

Those powdered sugar deep fried beauties there are called beignet (said bin YAYs) and they are about as delicious as they look.

I loved the trees framing the old brick building and the new building under construction. Sometime I will learn to crop photos and then they'll be nicer. This was taken through a bus window in motion.

I am thankful for the beauty and interest I feel in the world. Those are qualities I have not always found in the world and I am much happier when I can see them. I am hopeful to always have that gift. For you, too.

Day 284 - more conference summary

The window is actually a whole story high and inside is a room sized sculpture that you can climb inside of and climb into the second story of it. It's made out of scrap metal and old car parts and wood. Some parts move and you can clank them into each other for gong kind of effects.

The Mississippi River in the other direction and some bridge or other.

I enlarged this so you could see the float driving down the street. We saw lots of parade like things while we were in New Orleans. The locals did not bat an eye at multi-colored things driving down the street while we were all agape, "Is there a parade?" Things like that just don't drive around Manchester.

Now that you're in the mood for more New Orleans, I'll finish the survivorship lecture. He finished by talking about that curability of bad cancer has not changed; what has changed is that people are surviving longer. What is funny to me about that statement is the old saw that "life is a sexually transmitted disease which is universally fatal with no cure." I wish I had gotten more details on exactly what he was talking about because he gave survival times for advanced cancers: colon at 22 months, pancreas at 11.5, lung at 10. I wish I had the source and could find out more about those numbers.
I went to a case presentation of a patient with borderline personality disorder who was dying from her cancer in an inpatient hospice unit. They gave specific details of the behavior and the intervention, but the take home was that in their case it worked really well to have the behavior clearly identified (pick your battles), limit set in a way to make sure the patient didn't feel abandoned, have everyone respond exactly the same way (to the point of here are some specific words to use), to define consequences clearly to the patient. In the case they gave, the consequences were that the patient would be discharged from the hospice house and go back to the hospital. This particular patient was such a good staff splitter that they had to have the nurse that she had put in the "good nurse" column off from work while they implemented the behavior change plan. They talked about borderline personality disordered patients as having three states of feeling: held (the ideal state), threatened (where the undesirable behaviors come out to help the person feel they are getting back to held) and alone (where the person gets impulsive, dissociated and, at worst, paranoid). I think I can recognize BPD in patients, but had never been walked through here's what's going on or here's what to do about it. Interesting stuff.
Otherwise, today was spent about half and half in patient care and filling out the dreaded hospice certs and other forms. Not too bad.
I am thankful for Terry's new bike and the fact that it is warm enough he can ride it. I am hopeful for continued thaw and de-snowing of my neighborhood.

Day 283 - annoying and new

I have never been a headachey person. Until this month, I would say that I get one headache per year or so, but I have had a couple this week alone. I have taken my tylenol and am taking to my bed.

O, and PCORI turned me down which is OK because I am plenty busy, but still disappointing.

I'm thankful for all the years of no headaches and I'm hoping this one goes away soon. For you, I will hope for no headaches too.

The inside of the church in the previous post.

A partially constructed building. They should stop now, it looks so cool.

A tree on St Charles St in New Orleans. I enlarged it (because I just figured out how) so you could see the stuff hanging from the tree. Those are Mardi Gras necklaces.