Thanks, John and Molly

The calla lilies are beautiful as well!

UPDATE: Funny story. I heard a noise (boom!), so I went into the living room to see the lilies on the floor with dirt all over, Sam covered in dirt, and Anna sniffing everything. I yelled at the cats and assumed that Anna knocked it over onto Sam, since he was all dirty and she wasn't. The next day, Sam was standing on his hind legs pawing at the lilies again, and I see what must have happened the day before: Sam knocked it over on himself!! I apologized to Anna for thinking she was the bad one, and I yelled at Sam again to get away from the plants!

Thanks, Al and Eileen

The orchid is beautiful!

Thanks, Alice

Today Alice went home. She was here for about two weeks helping out with household stuff and going places with me. It was fun to have her stay with us, and I think the cats are confused now because they were actually able to get used to her. Yesterday, she and I wandered around Georgetown for a couple of hours and picked up some cupcakes.

The back of my head

You may be wondering what my incision looks like. Sometimes I do, and so I ask Phil to take pictures of the back of my head. I think it looks a little freaky, but when my friend Kim looks at it, she always says, "Wow, that's so amazing. It's so perfect." (You can click the photo to make it larger.)

2 weeks post-op

Well, the big day was two weeks ago. I'm now off the steroid, which is making my shoulder hurt more (the inflammation is back). If this issue could just go away, I would be fine. I'm going to do more of the strengthening exercises that the PT recommended, as well as apply ice and heat to the shoulder. I may also look into acupuncture.

I put in my contacts today to see how that would go, and it seems ok. I don't think I'm ready to wear them all day, everyday, but it's nice to have total peripheral vision again.

Yesterday we went to get Phil a haircut and consulted with my stylist about how to even out my hair. She seemed to think that a simple trim to get it all closer to the same length would be fine. I'll probably wait a couple of weeks before having anything done (I'm a little nervous about people touching my head at this point).

Last night as part of the Academy Awards, we held the Cat Oscars. Sam was up for his role in "Other Cat's Food," and Anna was up for her role in "Cat on a Bookshelf." The Cat Academy (the three of us) voted, and Samuel L. Cat won Best Performance. He didn't give much of an acceptance speech though, and the two of them had a pretty lame after-party.

Today I'm planning to go to the Post Office to drop the Magic Scarf in the mail to the next lucky recipient.

Top 5 memories

This is a list of the top 5 things that stand out in my mind from the hospital.

1. Not being able to breathe and being rushed through a bunch of weird hallways with an inflatable bag over my face
2. The feeding tube when it contained a disgusting green substance
3. The breathing tube being removed
4. Waking up and being concerned for my insulin pump but no one really explaining that it wasn't connected to me anymore and that I didn't need to worry about it getting destroyed in an MRI machine
5. Spit kept flying out of the anesthesiologist's mouth and landing on my face when he was telling me about his role in the surgery before the operation started.
   

Feeling good

I've been feeling pretty normal for the past couple of days. Yesterday I took a shower by myself (using the shower chair), and Alice and I walked up to Cleveland Park (probably around a mile round-trip). Today we went to Whole Foods, and it was my first time back on the Metro. The trip itself went fine, but I was tired when we got home. I'm going to start using the Wii Fit again soon and maybe go to an actual yoga class next week. We'll see.

Chocolate is tasting better, but I haven't tried Diet Coke again yet. My mouth is feeling a little more normal, and my eye hasn't been too dry lately. I'm almost done with the steroid, so we'll see how things feel a couple of days after the last one of those.

I've been a lot hungrier the past day or two - I lost about six pounds in the hospital, and I can feel it. I'm sure they'll come back over time though. My clothes are kind of baggy.

My arm is improving. I've been using it more, and I think that's definitely helping. It feels stronger and more of my ring finger is coming back. My right leg is still sore though.

Phil and Alice have been doing a great job taking care of me, even when I get cranky at times. Thanks!!!

Thursday

I don't have too much to report today so far, but we were able to wash what's left of my hair last night, so it feels a lot better now. Here is a pic from the hospital (I think this may have been last Thursday, but I'm not sure).

The leopard print scarf gets sent around as a good luck charm to people from the ANA Discussion Forum who are having surgery.

This or that?

At Washington Wizards home games, they ask a player a bunch of questions where he picks one or the other. I thought it might be fun to do that here.

• Hospital or home? Home
• Chocolate or vanilla? Vanilla
• Diet Mt Dew or Sprite Zero? Sprite Zero
• Phone or email? Email
• Thai or Italian? Italian
• Big fancy burger or McDonald's cheeseburger? McDonald's

Back at home for 24 hours

I got to go home last night, and it's so much better here. It's obvious how much sleep I wasn't getting at the hospital - my bed is way more comfortable. I finally got partly clean tonight, but my hair is still one big dreadlock. I can't wash it until at least tomorrow. It's insane how many bruises are all over my body. I've been awake for about 3 hours and then I take a 3 hour nap. It's working out pretty well.

Here's an overview of how I feel from head to toe:

• Head - satisfactory. Stiff neck still, can't turn head too much but it doens't really hurt. My non-AN ear is having some eustachian tube issues (it won't pop/I can only hear myself breathe - kind of annoying when your hearing is gone from the other side) but Dr. C said to try some Afrin nasal spray for a couple of days and then come in if it won't stop. I could see it being related to allergies, but this has never happened before. It goes away if I lay down to sleep, only to reappear an hour or so after I wake up.
• Shoulders - satisfactory. Seems to be loosening up.
• Arms - very satisfactory. Bruises but most of the residual sticky stuff from tape and IVs has been removed.
• Left hand - unsatisfactory. Still can't feel all fingers, still have weird skin pains. Did therapy putty exercises.
  
• Torso - satisfactory. Heparin shot sites are a bit painful/bruised but not a problem.
• Legs - unsure. The pressure points on my right leg are still weird, feels like a large bandage is taped over my leg. Can't fully feel touches on the right side of my right knee.
• Diabetes - improved. Blood sugar actually registered in the 100s tonight before dinner. Sweet!! I'm down to 1 mg Decadron every 6 hours.
  

Major props to Phil for his showering assistance tonight. You did a great job :) Also special thanks to KG for driving us home last night, and to Alice for her help today.

Homecoming meal

This is a picture of me soon after I got home. I had a celebratory meal of cottage cheese and blueberries with some Diet Mountain Dew. I was pretty tired and went to bed soon after.

(In the interest of full disclosure, this post was actually written on 2/27/09.)

Complaints welcome

I thought that the diabetes wouldn't be so difficult to take care of. Apparently an endocrinologist wasn't consulted until last night when they asked me about calling my doctor. He said he was happy to help and offered some advice. I don't know why they didn't think to involve him or someone like him until now. Granted, my blood sugars are still out of range. But they just kept asking me what to do, and I have no experience with steroids - how am I supposed to know what will happen?? And, I just had surgery.

Additionally, I am barely eating, so I really don't think my diet is affecting my blood sugars, as someone noted in passing. Thanks for your opinion...(blank stare).

I'm closer to the low end of the mg range of the steroid, Decadron, now, so that's good. You can't stop it cold turkey though, so I have to finish the however many days of it there are. I'm burning through insulin like water and hardly making a dent. Very strange feeling, as I'm usually very sensitive to insulin.

Had I realized that this was going to be more of an issue, I may have tried to get more plans in place beforehand for the management of the diabetes, but it sounded like they knew what to do. Turns out all they did was ask a bunch of PAs what they thought and then left it up to me. If there was a treatment technique for AN removal/control that didn't involve steriods, I would totally do that, but I think it's pretty unavoidable. I hope I never have to go back on them again for the rest of my life.

Monday may be the day

Dr. T came by a few minutes ago to say that I'm looking good but that my blood sugars need to be a bit closer to normal before I can go home. The steriod is being stepped down, but he doesn't know how low it needs to be before I'll be ok since (repeat after me...) everybody is different. It looked like he'd like me to be able go home though, so that's good.

Diet Coke and chocolate are two fallen soldiers in this whole thing so far. The metallic taste in my mouth makes them unappetizing, but I am getting hungrier. I told Phil that I want to eat three grilled cheese sandwiches and two brats, but not necessarily all at once. My neck is very stiff still. I did get the feeling back in the pinky finger of my left hand though, so that's a victory.

Not being able to sleep at night makes you more tired during the day, so at least one part goes faster. My eyelids still look like they're inside out - when I close them, I feel like I'm looking at bugs and weird stuff that's growing. Various bruises are healing too, including a goofy one under my left eye from the facial nerve monitoring during surgery. I'd like to get this last IV line out so it can start to heal, plus it's not being used for anything anyway. I haven't taken any pain meds stronger than OTC Tylenol, which was a bit surprising but not totally unexpected. The PT gave us some names for vestibular therapists closer to where we live - getting back to normal may definitely take some time. Walking in a straight line is ok, but I think I look zombie-like. Could also be from my bed-head. Need to find out more about showering.

Hello all

Well, I'm posting this one today. It's a little tough with the numb fingers on my left hand, but I'm being patient for them to come back. They said it is probably a side effect from the parkbench position I was in for 10-12 hours where my arm was stretched out and the nerves disturbed. My face is doing well - hardly any evidence of weakness. Still gotta get the stuff out of my hair and my incision area feels pretty tight. Will take awhile for my neck to heal I imagine. Been walking with the PT and that's going well. I'm somewhat off balance but it's not horrible. I'm excited to drink some Diet Coke this afternoon. The hospital food isn't that great but enough is palatable. Those are the big events for now. Thanks for following along :)

Recovery Is Tough

Kim is back in her chair today, and met with the physical therapist who had her up to take a few steps. She's eating food again and is back on her insulin pump. When a private room opens up, she'll be moved out of the NCCU, which should be a nice change of scenery for her.

Kim's trying to stay in good spirits but says: "It's hard to repair one thing when it seems like everything's broken."

-pz

Less Plastic, More Kim

As of this morning Kim is sans the worst of the pesky plastic tubes (ventilator and feeding), and was able to get out of bed and move to a chair to hang out for awhile.

Dr. T and Dr. S (who assisted Dr. C with the surgery) came by to inspect Kim. Both were happy with what they found. There is more improvement in the shoulder, still no signs of anything odd with the facial nerve, and a healing incision.

Dr. T said that the head MRI looks great. Also, the neck MRI revealed the source of the shoulder issue (in short, swelling around the 5th and 6th vertebrates pinching a nerve, which will resolve itself with time).

Kim is going stay in critical care the rest of the day, and will hopefully be moving to her room tomorrow morning. We'll try to post tomorrow.

-pz

The Day After (Vol. 2)

This afternoon Dr. C and his crew stopped by to visit Kim and I. He was pleased with how Kim looked and responded. They reaffirmed that Kim was breathing on her own power (she was pronounced "the Olympic champion of breathing"), and that the ventilator was now in place only to ensure that an airway is open. Dr. C was very pleased and happy (and I think a little surprised) with how Kim's facial muscles were responding (perfectly). He posed an alternate theory to what may be going on with Kim's left shoulder, saying that the eleventh nerve, which is in proximity to the area they worked in, may have be disturbed by swelling etc. In any case, he also noticed improvement and is expecting the issue to resolve.

Kim was (finally) taken for her MRIs at 6:30, and was not back when I left at 8:30. However, I just spoke with Kim's nurse who said that Kim's back and that the scans look good. The current plan is to remove the ventilator tomorrow morning.

Kim is doing well... responding and writing with no problems, and seemingly in ok spirits. Obviously the breathing/feeding tubes are not very comfortable, and I can tell Kim will be hugely excited to have them removed tomorrow morning.

More tomorrow evening.

-pz

The Day After (Vol. 1)

Early this morning Kim was put on a ventilator as a precautionary measure because she was having some difficulty breathing probably due to swelling around her throat. They're going to run head and neck MRIs this afternoon to confirm that nothing is out of the ordinary. It's possible that both the breathing and shoulder issues stem from a pinched nerve, which the MRIs will also help to rule in/out.

Kim is awake and able to write. Dr. T spoke with both of us at length this morning about the outcome of the procedure. Overall, he sees the surgery as very successful. Kim is responding well, showing no effects of facial weakness (though this may change temporarily depending on swelling), and regaining strength in the left shoulder at a noticeable rate. He thinks it's most likely that the breathing issues are simply a result of swelling, and imagines they will be able to remove the ventilator shortly after the MRIs. The only long-term issue will be the loss of hearing in the left ear. The hearing nerve is in tact, but he said it was fairly damaged (it's "just a wisp"), so hopes are not high on that front.

Being able to talk to the doctor with Kim was definitely helpful as we could both see that he is optimistic and expects that (aside from these relatively small and odd issues) Kim will be progressing as expected. For now she's going to stay in the critical care unit until we have the MRI results and subsequent plan.

I'll post more after visiting hours tonight. Thanks to everyone for their thoughts and support.

-pz

The Big Day

Hello all,

Kim asked me to update the blog today to let everyone know how her surgery went. So, here goes...

We arrived at Johns Hopkins in Baltimore ~5 this morning (a huge thanks to Chris for driving us from D.C.). Kim was in pre-op until ~7:30, and was (for good reason) extremely nervous. Both of the primary surgeons and the assisting surgeon stopped by to talk with her, and her anesthesiologist did gave an excellent overview of how he would be monitoring and managing Kim throughout the surgery. Because Kim was pretty nervous, he gave her something to help take the edge off, and then they moved her into surgery. We were told to expect everything to wrap up around 4 or 5pm.

From there...

* We were told that the first incision was made at 9:20.

* At 11 the nurse checked it and said that Dr. T was progressing smoothly and that Kim was doing well.

* At 12:20 we were told that Dr. C was now in the OR handling his portion of the surgery, and that so far everything had gone well.

* At 2:20 we heard that Dr. C was still working and Dr. T was scrubbing back in.

* At 4 Dr. C came out and let us know that he was finished with his portion of the work, and that Dr. T was continuing. The procedure would likely take two more hours as they work on removing the tumor and closing. They said that Kim had a fairly small space to work in (anatomically), and while the tumor wasn't any larger than expected this lack of room would cause it to take a bit longer than expected. Also, the tumor was stuck to the facial nerve more than hoped and there will likely be some temporary facial paralysis. However, she was doing fine otherwise.

* At 6:30 Dr. T came out to let us know that they had finished the procedure. Kim was now awake and on her way to the ICU where we would eventually be able to see her. While he could not be sure, his feeling was that hearing was likely lost in the ear (this lack of optimism was later expressed by Dr. C as well).

* While we were waiting in the ICU, Dr. C and Dr. T came out to let us know that the facial weaknesses seemed to be fairly minimal. However, there was some (unusual) weakness in Kim's shoulder, and they took her for a cat scan to make sure that nothing was out of the ordinary. The doctors felt the cat scan looked good, and are assuming that the shoulder weakness is a temporary side-effect of the position her arm had been in for the duration of the surgery (possibly furthered by diabetes). They said that it seemed to be improving and that they would watch it over the coming days.

* We were able to see Kim at 8. She was in a bit of pain and was worried about the shoulder, but was half-awake and able to whisper.

That's where things were left. Overall, both surgeons seemed to feel fairly pleased with how things went. While hearing was likely lost, and there may be some temporary facial weakness, these were both things that we expected. I'll continue updates tomorrow as Kim makes the switch from the ICU to her room.

-pz

Day before surgery

My brother came to hang out for the weekend to distract me from the events on Monday. Unfortunately, he had to go back to school today, so now I'm back to worrying a little. We went to Whole Foods and picked up some snacks for the hospital, since I've heard that the food is somewhat lackluster and not very attractive when you don't have much of an appetite. I'm working on packing a bag for Phil to bring once I get to a regular room, and we're going to discuss the updates list later today.

It's so weird that this is actually happening. What seemed like so far away in December is here now. I guess we'll just see how it goes...

Last day at work for awhile

Today was my last day at work for six weeks. My coworkers surprised me with a breakfast, which was nice. I told them that I'd be back before they know it! See ya soon, cubicle :)

Waiting

I'm at work today - I have 2 1/2 days left until I'm out for six weeks. Seems pretty surreal. It's just so strange to go from regular-do-everything Kim to had-brain-surgery Kim. I really only get freaked out when I imagine waking up after surgery and having a bunch of tubes and IVs and stuff on me.

I had a dream about everything last night. I was staying on the 94th floor of a hotel the night before surgery. I had to be there at 5:30 am, but I woke up at 6 am. I rushed to the hospital and they took me in and put a gown on me. Then I was on a gurney being wheeled around the hospital but I wasn't going to surgery. The details are fuzzy now, but basically I was just going to different places and being left there with no explanation. Eventually, I found my family and they didn't know what was going on either. Then we were told that it was a fake hospital and they never intended to do any surgery, so the whole day was a waste of time. Not sure what that means...