Pictures

I love pictures. That’s why I majored in History of Art – the books have pictures. However, until yesterday I could not view my radiological images on my computer, and I had only seen them briefly on Rusty’s computer. The world is a much better place now that I have downloaded OsiriX for Mac and can look at my own imaging on my own Mac. Needless to say, this has been a huge time sink for me the last 48 hours, and will continue to be so for a few more days while I revel in the thousands of pictures. (Then a few more days while I measure, and compare, and compile data. I love wading through a big pile of data. Really, I do). In the mean time, here is an MRI shot, from my very first MRI. This picture is taken without contrast, and one of the first in the series. No wonder the technician got so nice during the MRI.

For those of you reading along at home, the circle in the middle of the white stuff on the right side (radiological images are reversed, so that is actually my left side) is the abscess itself. The white stuff is swelling (edema). Side and vertical shots show the swelling was that size all the way up and down my brain, so the entire midsection of the left side of my brain was pretty much shot. The swelling was filling up the ventricle (the butterfly shape in the middle) and pushing on the right side of my brain. That is why the midline of my brain curves (midline shift). It also – I can tell you this from experience, not the MRI – was pushing my eyes out of their sockets, pushing on my sinuses so hard that it felt like someone was literally pushing from inside on my cheekbones, and down on my teeth (on the left side). It was quite painful by the time this MRI was done. Remember, I went to Trader Joe’s and drove home after the MRI. I had driven two children and a dog down from Tahoe in a blizzard 3 days earlier. I might have rethought those decisions if I had known what was inside my head, but never expect a neuro patient to be self-aware…

More Drugs

This morning we met with the Infectious Disease team: Dr. Tang (a new fellow, and a very sharp one) and Dr. Blackburn (the doctor whose first words to us last February were “I’m Dr. Blackburn and I am not your doctor.” Karma’s a bitch). They read the MRI results as we did, and were more interested in my experience that my neuro symptoms were continuing to improve. So, although it is possible that we are over-treating the abscess, we decided the conservative thing to do would be to continue treatment for – wait for it – another 2 months. Since things seem to be getting better (super slowly) and my immune system has reached detente with the moxifloxi and no longer interferes much in my daily life, this seems reasonable to me.

Our next appointment will be on December 18th, the last Friday before school gets out for break. I chose that date, because it will be exactly one year from when I came down with the infection that caused all this havoc to break out (I felt sick the morning break began). This year, my plan is to stay healthy. To that end, I have been trying to exercise, doing weights with a trainer (who keeps me from falling over – a real risk for me), walking, and riding both the Xtracycle and, after dusting it off, my road bike. Today, I rode home from my ID appointment at the Stanford clinic. This is a huge improvement from February, when I managed to walk from the hospital to the car (just like I did today), sat in the car, and walked straight upstairs and fell into my bed exhausted. As great as it felt to be in my own bed after a 3 week hospital stay*, I feel a whole lot better today, even after my 25 mile ride. Now I am off to school to load the kiln and pick up my son.

* I spent so much time at the hospital, and the in the ATIC, that people recognize me there. Today, waiting in line at the hospital cafeteria to purchase my oatmeal, an ATIC nurse was surprised to see me. I don’t know if they all have great memories, or I have an unusual medical history, or if I am just funny looking. Probably the latter.

One Official and One Useful MRI Reading (Mutually Exclusive)

We have learned that the official radiology reading will, as usual, say “no change.” As described in our post below, Rusty and I do see changes. So does our friendly, neighborhood world-renowned neuroradiologist (and his the opinion that counts). According to the expert, looking at my MRI’s over time, the abscess is slowly fading away, as is the surrounding reaction, but neither is entirely “gone” yet (there will always be a scar, so by “gone” I assume he means that the abscess is not at the scar state yet). That is consistent with what we saw. In any event, this may mean more drugs, which I can live with, or it may not – either could make sense. As Rusty would say, another inconclusive test.

Highly Unofficial MRI Results

Had another MRI this morning. For the first time (for me) they put in a temporary iv (with a plug like my picc line) in my left arm. Every other time, they have used an existing iv, my power picc line, or just slammed a needle into my arm full of gadolinium. I think I actually prefer the last method, even though it usually causes bruises – now I have bruises and pinkness where the iv tape irritated my skin. On the plus side, there were no orders in for blood work, so I only got stuck once today. I am not sure why no blood work was ordered, but I am not complaining! I am pretty confident that everything would look normal, so I am not concerned about the lack of orders.

As for the MRI results, Rusty and I reviewed them. Our take is that the ring is less bright, at least in some views, suggesting less inflammation (and less immune response, so it less likely that there are active bugs inside). The abscess isn’t much smaller, but the wall is thicker and it looks more filled in. For me, this is a more dramatic change than I have seen in the past, so that is good. I still think ID will take me off drugs on Friday, but I have been wrong before. At least things seem to be moving in the right direction. We will let you know on Friday after we meet with ID.

Scanxiety

Tomorrow, Wednesday, 10/14, is MRI day (and blood draw day. At least I think it is blood draw day – I forgot to check). I am less nervous about this MRI than the others, since I feel so much stronger and healthier than before (Exercise helps! Who’d have thunk it?) and am not worried that the abscess will look worse. However, I am still experiencing a bit of “scanxiety” – a great word I learned from friends in the cancer community. Unfortunately for those around me, my scanxiety manifests itself as distraction and impatience. Apologies if I have forgotten something or snapped at you this week.

Predictions: Tomorrow I expect to see a somewhat smaller abscess, one that is more filled in and has a slightly less bright ring around it in the pictures with contrast. As Rusty says, not much of a change and, as usual, inconclusive. Still, we hope for news that is good enough to convince my Infectious Disease doctor (aka Dr. Brian Blackburn) to take me off of drugs at our appointment with him and the I.D. fellow du jour at the Stanford Infectious Disease clinic on Friday.

Your prayers, chants, and positive thoughts have done so well in the past. Thank you all so very much. Any you can send our way tomorrow morning would be greatly appreciated. We’ll post our uninformed radiological readings, and probably the images themselves, later in the day, as usual.

Olympics

Chicago’s bid for the Olympics was in the news today, which reminded me announce that I have – after years of physical lassitude – finally found my sport. Ok, it’s not actually an Olympic sport (yet), but I figure that if synchronized swimming can be an Olympic sport, then this could be too.

To back up a step, I know we have mentioned several times that we love our Allergy doctors. They are such nice people, always so helpful and concerned. And, best of all, they do email. A few days ago one of the Allergists sent me an email to check in and see how I was reacting to my latest set of antibiotics. I responded that everything was fine, or at least nothing I couldn’t handle, and filled her in on the details. This was part of her response:

“Seems like you have a super olympic type response to drugs. (now if I could only get you a gold medal and keep you safe and out of the hospital ”

See! I could be truly competitive in an Olympic allergic drug response contest. Not sure how that would be judged (would you have to die or suffer fulminant organ failure to win? Or would the winner be the one who came closest without suffering permanent injury? I favor the latter, but realize I am biased). Yes, some will say the Olympics are already a “drug response” competition, but I say, why not be open about it? Don’t just allow drugs with a wink and a nod, celebrate them and the human body’s response to them. I am thinking of moving to Girona to begin my training*

In all seriousness, this isn’t really a great way to be exceptional. We have never wanted me to be medically “interesting” and I am already counting the days (12) until my next MRI, and my next appointment with ID (two weeks from today), when I hope to get off drugs and go back to being more or less boring and normal.

* A joke, which only those who still care about professional cycling will understand.

Non-Remembrances of Times Past

While I was in the hospital with drug reaction-induced high fevers, Rusty and I were shocked at the primitive fever control measures. We had assumed that hospitals could do more than you could do at home to lower high fevers. For the most part, they can’t.* Just like at home, they give out Tylenol (I was on the maximum dose around the clock for days, which probably didn’t help my liver which was being damaged by the DRESS reaction). The hospital also had a cooling blanket, which is a pad filled with circulating water that can be chilled to a set temperature. Rather like taking a cool bath, shower or sponge bath at home, only you don’t get wet and can be on it 24 hours a day (as I was). Like cold baths, I gather that most people don’t like the cooling blanket. I was so feverish that I thought it felt great, even though it was set to around 60 degrees.

When these measures didn’t keep my temperatures down (and they didn’t), I remember the nurse coming in with an armload of ice bags, which she packed into my armpits and groin areas to help cool the blood circulating through those areas. I remember thinking that ice packs are usually very unpleasant, and that this didn’t seem like it would be a lot of fun, so I was pleasantly surprised that I barely noticed them at all. However, I do remember using them once in the NCOR. What I don’t remember is more surprising to me.

A couple of days ago, we were talking to Katy and I mentioned the ice packs. She said she knew about them because she had seen them and helped refill them. I was surprised because I did not think she had seen me in the NCOR. Rusty then told me he had refilled the ice bags himself many times over many days, both in and out of the NCOR. I was stunned, because I have absolutely no recollection of this whatsoever. None. You would think that having ice packs placed on your groin and armpits would be something that would make a lasting impression! I realize that I was sick (the nurses on a later admission told me that they had been scared because they thought I was dying) and under the influence (Demerol and other fun things), but still!!! Well, I suppose it is a mercy to have no memory of certain things, and that neurological deficits can be a blessing.

(*In fairness, hospitals can put people on a bypass-type of machine and cool the blood and send it back into you. They do the reverse kind of thing for hypothermia, too. However, this is major and damages your blood, so it is not a long-term treatment and used only as a last resort. I never got that far, thank goodness, especially considering that I later lost most of my blood cells anyways, thanks to my spleen.)

It’s Better to Give Than to Receive

During the first half of this year, my family and I were on the receiving end of many meals, errand runs, and other help from friends and the community. Carol Tinsley (an angel in our eyes) set up a website to coordinate all of the volunteers, and we were astonished by how many people were more than willing to help. In some cases, the people who brought us wonderful meals were people I was just getting to know. In speaking to them later, several explained that their family had gone through cancer and they wanted to repay the kindness they had been shown, or as more than one person said, to “pay it forward.”

Today, I had my first opportunity to take a meal (dinner: minestone, applesauce and pumpkin bread) to another family. While the mom napped and went to get an IgG shot, I watched her children (they homeschool), made them lunch, forced them to practice piano (I have lots of experience in that!) and led the children in 1.5 hours of ceramics using the unused clay from a clay training session I ran last week. As often happens when I teach, I learned just as much as the students (albeit different lessons), especially as we worked on projects that I am still prototyping and have yet to teach. Once the pieces have been bisque fired, I will take them, along with another meal and glazing supplies, back to the children. I am hoping to do this while I am still on antibiotics – my body is as sterile a site as it ever will be right now – to minimize the risk of infection in a house striving for neutropenic precautions.

Although my cooking skills are fairly suspect, I have always tried to answer pleas for meals. I figured that some day I would need them myself, although I did not expect that day to arrive so soon. Thanks to everyone who helped us in any way – thought, word or deed. At this point, I have been more than paid back, and am looking forward to continuing to pay it all forward, or as I said the other night, putting some pennies in the karma jar. It’s nice to be on the giving end again.

Getting back to normal

When things were not looking so good while I was in the hospital last Spring, I remember thinking to myself that all I wanted was my old life back. Just my old life, nothing fancier. Yesterday was wonderful. It was the first day since December 2008 that felt like a “normal” day for me. Here’s what my “normal” day looked like:

7-7:45 a.m. Made breakfast, lunch and snack for 3 kids, made sure their water bottles were filled and their backpacks stuffed, and sent them off to school. Took my drugs.

7:45-8:15 a.m. Dealt with the dishwasher. Checked email, wrote the agenda and a proxy for the Home and School Club Meeting (PTA) and sent it off for printing and posting. Got not one but two lovely and flattering emails after my speech the night before. Apparently, it went over well. What a relief.

8:30-9 a.m. Biked 3.5 miles to gym. Passed Melissa and the girls walking.

9-10 a.m. Worked with a personal trainer (ok, I admit, that’s not normal).

10-10:30 a.m. Rode 3.5 miles home. Got cheered on by Melissa and the girls as I passed by them again.

10:30-11:00 a.m. Kept Rusty company on a quick trip to AAA.

11-11:30 a.m. Drove to Clay Planet.

11:30-noon Purchased 500 lbs of clay and 100 pyrometric bars.

Noon-12:30 p.m. Talked to the Palo Alto afterschool art teacher in Clay Planet parking lot about projects and teaching methods.

12:30-1 p.m. Drove home. Realized that artists are friendlier to me with my pink hair.

1-2:15 p.m. Met friend Andy and went to lunch.

2:15-2:45 p.m. Made Andy help me unload and stack 500 lbs of clay at school. Teachers and students were excited seeing the bags of clay arrive.

2:45-3:00 p.m. Brought children and neighbors home. Gave them snacks.

3:30-4:00 p.m. Drove Katy to Stanford Diving.

4:00-4:15 p.m. Dropped Andy at Palo Alto train station.

4:15-5:00 p.m. Ran to Safeway for groceries and 2 liter soda bottles for Katy’s science project. Was falling asleep so I went to the in-store Starbucks. The Menlo Park Safefway is like a village.

5:00-5:30 p.m. Got a flu shot at Safeway.

5:30-6 p.m. Drove Katy home.

6-6:15 p.m. Admired Margaret’s newly rented trombone. It is very, very loud. And large. And loud.

6:15-6:45 p.m. Took Katy and her sleepover stuff to Olivia’s house on the Xtracycle. Talked to Lu Ann, then rode home.

6:45-8:15 p.m. Walked downtown (about a mile each way) with Margaret, Rusty and Jax to Pizza My Heart. Explained to Margaret about the anti-homosexual preachers and the counter-protesters in the town square. Margaret sided with the counter-protesters. Met someone who recognized me from my speech the night before. Felt like a celebrity. Walked home.

8:15-9:00 p.m. Retrieved Sam from our neighbor’s house, where I found him naked and clean. They gave him a bath and a hairwash. He needed it. Got Margaret and Sam into bed.

9:00 p.m. Finally took a shower. Caught up on my emails. Took more drugs.

What a great day! Lots of energy, lots of things accomplished, lots of positive feedback. Ok, so I am sore today, but that is normal, too. I like my life and I am so glad to be getting it back.

Note to Self (more boring drug stuff)

Ran out of Zyrtec (Cetirizine hydrochloride) last week, and did not want to buy more if I was going to get off Avelox (moxifloxacin) at the end of the week. Swapped in Singulair (montelukast). Broke out in rashes (mild). Singulair is a leukotriene receptor antagonist. Zyrtec is an H1-receptor antagonist. It appears my drug reaction to the moxi involves H1 pathways, and not leukotriene ones. Continuing to take Pepcid (famotidine), and am not sure if it helps or not (H2-receptor antagonist).

OTOH, all these drugs have some value: I’m not bothered at all by seasonal or other environmental allergies this year – and no illnesses, either (just drug reactions).