The Sun is Out Again

After several gloomy, dark days here, we are again seeing the sun, and that is so nice. It's not exactly warm yet, but still my mom and I are bundling up a bit for a walk with the dog every day. I have picked out a birch tree to photograph each time, which is my designated "spring tree." Over the course of how ever many days we'll watch it bud and leaf out and that will officially seal the deal that spring has arrived. So far, not much has happened.

It is hard for me to know how I should be feeling after brain surgery. I am getting some energy back, but it's not an all day thing. Mornings are especially tough. I have a hard time waking early and staying awake. Today I was up by 8:30, but napping at 11am after doing the normal morning things. Falling asleep at night has been a challenge because my head hurts and it's hard to get comfortable. The incision does not hurt to touch, but the area around it is really tender and the top part of my shaved scalp area is so sensitive, especially at night. There are times any time of day that I get these burning feelings in that part of my head--and I wonder if that is just the nerve endings coming back to life (that part of my scalp has been pretty numb since surgery).

Other after-effects of surgery have been numbness (hard palate and upper gum, left side) and hearing disturbance on the left. I may have lost a smidge of hearing, but the main issue is a sense of being congested or like I have fluid in my ear. It's like an echo chamber when I talk sometimes. At my appointment to have my stitches out, I learned that nerves take 3-6 months to heal, so I have to be patient and hope these things improve. But still--I am having no shocks and that is still such a relief.

The plan for next week is to see my neurologist for the start of the weaning process from the anti-seizure medications. I'm envisioning the day I can throw away my pill box!

March Madness

It's been all about basketball here--namely the high school boys basketball tournament this weekend and the girls tourney last weekend. I never knew how much my mom likes watching basketball. Maybe that's where I get it from? I love the game, watching the amazing plays and great three point shots, of course, but I also really love the drama. I am intrigued by the coaches and their demeanor and behavior, and I really love watching the players and how they react when they foul someone or when they get fouled. It's amazing to see how some of them get really beat up during the game (like Liz did) but keep on playing. Yesterday there was a kid with a disjointed finger, chipped tooth, and two bleeding scratches still playing until the end. It's not that I like brutality; if so I'd watch boxing. I am just impressed with how much a player goes through to succeed in getting the ball into the basket. In the very late part of the 4th quarter, the bench players substitute into the game, particularly the seniors (so they have a chance to play on the college court before their high school career is over) Also it's the end of the game that I am so interested in---when the inevitable happens---somebody wins and somebody loses. Those tears on the sideline are true emotion.

As far as healing goes, my incision is looking pretty good, and the stitches come out tomorrow in Milwaukee. The bottom inch or so of the incision is thicker and irritating to me, os we'll check on that tomorrow. No signs of infection, no worries at all. I have taken three outings this week--one to get my hair cut, one to a little shop near home, and last night to see "Grease" at a school nearby. Last night's outing was probably a bit much as far as energy and comfort go, but the performance was great and the whole family and Beth enjoyed it a lot. This morning I went to Mass and it went okay, except I never realized how much effort it takes to stand and sit and kneel in an hour...

Sometimes I feel like I'm being kind of a wuss, but then someone reminds me that it was two weeks ago that I had brain surgery and then it seems to make sense again.

Sunday Reflections

The pleasure of a shower should never be underestimated. Today the energy and coordination for a shower (not one that included getting my head wet, though) was present, so I took advantage of it. Now I'm exhausted. Clean, but exhausted nonetheless.

This post will be kind of like one of my favorite kids' books, There's a Monster at the End of This Book, where Grover warns us right from the start about the harrowing end of the book. He tries all different creative ways to prevent the readers from getting to the conclusion, but the comparison really ends there. I'm only going to issue a warning---there is an incision at the end the end of this post!!

This warning is here to keep some of you from looking at something that could gross you out and to titillate my medical friends.

Here on Patton Drive we have had some nice visits, some cards in the mail, a flower delivery, and great food. I am getting everything I need, and my mom and family are being well cared for too. This is my third full day at home. It is so much more comfortable than at the hospital.

Okay--here's the lowdown on the surgery.

The day before, we left toward Milwaukee in a snowstorm ("winter storm warning") and that made for a long, long trip. We saw so many cars in the ditch, lots of rescue vehicles and tow trucks. It was fine for us, just really plodding. When we got to Kim's house that night, we just settle in, talked a while, chatted with the pooches and Milo the cat, and then watched a disgusting but funny movie which took my mind off everything. Slept well for about 5 hours and got up at 4 am to get ready...

Remember there is an incision at the end of this post!!

At the start of the day it was all about prep---paperwork, health info review, orientation to how it's all going to work, etc. Then I went off the the "holding area" and met a very nice nurse who talked with me a lot until the anesthesiologist and a resident came to get my IV going. This nurse would also be my recovery nurse and she stayed with me until I went to ICU. I was feeling really calm during this period. My friend Scott had suggested a simple breathing prayer to say/do if I was dealing with anxiety at all (breath slowly in with "Lord Have Mercy" and slowly out with "Christ Have Mercy" and repeat). Each time I did it I was really calmed--before and after the surgery.

I remember nothing else at all about being taken to surgery. Cannot remember being in the OR at all.

Surgery started at 7:30 am and at 10:15 Dr. Kopell came to talk to Jeff and Mom & Buster. He found a vein pressing on the trigeminal nerve and an artery very nearby, which explains my TN pain! He put in the Teflon cushion pieces and all went well. I woke up around 2pm and saw my family and the doctor but I don't recall much about that now. I woke up again around 6pm and was taken to ICU at that point. THAT was a rough night. I was really sick and had several sessions with the emesis basin, which hurt so much and was upsetting to me because Dr. Kopell gave the nurse really strict instructions while he was standing next to me -- "I don't want her retching. No retching!" They did give me good medication for it but usually after it had already happened...I am so glad that part is over. The next morning I was in a regular room on the neuro unit by 10am. It was quieter there. The catheter was gone, so it became my responsibility to get up from bed and walk...hard to do and painful but it did get better each time. During the time in the regular room, I could not stand to look at food. I drank milk and water and ate some ice cream a couple of times. Anyone who knows me will understand how truly unusual it is for me to turn away food---even hospital food. My pain medicine may have been adding to that problem, and it was also giving me some funny side effects and not really managing my pain that well anyway, so after it was changed, things were better in all areas. I woke up, found an appetite, kept things down, walked in the hallway, cleaned up and out on some clothes I'd brought from home, and slowly felt more human. I was discharged on Thursday, March 12, late in the day, and we had our 4 hour ride home, with me fully loaded on meds and hugging my pillow tight to my head so I didn't feel the bumps.

Remember there is an incision at the end of this post!!

Now I'm dealing with some pain issues, some med side effect issues, an outbreak of cold sores, but nothing overwhelming. And I still take ALL of my previous medications for a while, and expect to be weaned in April.

The best part is, aside from a couple of incidents of some very light shocks, my TN pain is gone!

And that was the point of all of this anyway.

Okay---be warned! Here's a nice shot of the incision:

home

wow---I am home.

It has been a hard week.

So many people have been by my side either literally or by praying and calling and caring for me/us. It's overwhelming.

I have good pain management and my mom is here taking care of my every need. While we were got Jeff's mom was here taking care of the girls and the house and the animals, and I hope she gets some rest now!

I'll write some more details sometime, but for now just know it was a successful surgery and I have to work on recovering now...

Prayers

This is not the best photo, but I think you can see this really cool pair of socks to the left. They are prayer socks, knitted for me by my friend, KJ. She is a KNITTER, as are a few other people I know, and I really admire that. I tried to learn how to knit. It was not a success. I got very tense and my stitches did too. But I love to watch other people knit, and I actually find it very relaxing.

But the real point of this is to talk about prayer and how I know and can feel that many people have been praying and will continue to pray for me through this. My own prayers are usually of the informal type, just talking to God. Sometimes I just pour it all out and other times it is a bit more focused on things I am grateful for, people I am concerned about, and things I am trying to find strength to deal with. I do have a Rosary recording on my ipod and have found that to be very calming, too, and I love the community of praying together at Mass, but I was not raised to be a precise formal pray-er and that has been good for me.

It astounds me to reflect on the support system I have! In fact, my whole little nuclear family here on Patton Drive are so well cared for. Friends are sending their prayers and their concern for us out in so many ways, all intending the best for us in a successful surgery and recovery. Personally, I can just feel this. There's not much anxiety here lately. We've been having some fun with it (figuring out which things I can use the excuse "but I have a hole in my head" for and which situations where that isn't going to work ).

As surgery gets closer, I am (finally) seeing this now as part of the process of dealing with this diagnosis. Life has been going on the whole time, and with the exception of some serious napping I've been in it. Now it's time to take the next step which should lead to a life without pain and without medication. If there are complications along the way, I'll deal with them as I need to. I am really seeing how I can't worry about future things I cannot control. It would be impossible to write those words and truly mean them without the support and love that has been shown to me in the past many months.

Thank you all.

A New Chapter

This morning was different. The car went out of the driveway toward school like it has for 11 years, but Jeff and I were still in the house, standing at the window and watching this milestone happen.

Liz got her license yesterday. Laura was at least equally happy about that if not more so. There must be some prestige to having a big sister who drives. So off they went to school together. I can only imagine the mood in the car. Here, it's a bittersweet feeling, which I think most moms and dads can understand.