Archive for June, 2008
MRI procedure went well…they treat us so nice in there. A nurse (victoria, another one of Misty’s regular nurses) tracked down the nurse practioner got her to sign some papers for me (that I had forgotten), then hand delivered them all the way across the hospital to us. Then I realize that the technicians (jamie and nick) saw the schedule (we were scheduled for 7pm) and made the office manager push Misty up earlier so the nursing staff would be on hand to access her chest port (they need an IV put in to administer the contrast and if the port can’t be accessed they have to do a regular IV…which doesn’t work so well with her chemo veins. Only the day nurses are specialized to access the ports). Anyway, it went well. Will probably call the doctor tomorrow or the next day to discuss the results.
She got excited a bit today when she curled her fingers like she did a few days ago. So that’s good. And while I had a terrible time getting anything in her for dinner (everything I tried made her sick – even orange juice – she ended up eating carrot sticks and applesauce), she still weighed in at 96lbs and has for the last few days.
Today was a great day. We went to a baby dedication for our little Lyla Parker (Scott and Ann’s youngest) and spent some time at a party afterwards. Misty was doing really well.
On the way home actually, she was trying to tell me something and we were having a bit of trouble. So she started humming something. After a few tries, I realized she was singing “Speechless” by Steven Curtis Chapman. Another few minutes and I realized she was asking me about a story I told her over a month ago about how his daughter died (post from may 22). This was really cool because when I told misty about that originally she wasn’t really “with it” enough to process the conversation and give me any response…but now, weeks later she randomly remembers that (his song came on the radio) and she finds a way to talk with me about it. It’s encouraging that even when she didn’t understand what was going on, her mind was absorbing stuff. I can’t wait till that time in the near future when we get to sit and talk (with words) about how she had cancer…should have died…but was healed.
Tomorrow (monday) is MRI. I’m not worried…
Misty and I were in church a few years back and she overheard a rather interesting conversation. A woman who was new to the church was opening up to the lady next to her. She was confiding in her about some very serious issues…things that would break my heart to hear. At the end of the listening session, the recipient gave what seemed to be an obligatory solace: “God’s grace is sufficient.” Misty recalls being completely offended by the lack of interest that this church member exhibited for her hurting pew neighbor.
Now…there is nothing wrong with the phrase “God’s grace is sufficient” – frankly, I don’t think it means much of anything to a person who has not had some time to settle in with the usual christianese that we church-goers speak…but nevertheless, it is a true statement. But the frustrating part was that this woman rattled off this cliche, without at all caring about the life story she was being entrusted with. This is a crime. When a person chooses to open up to you, take it seriously. We need to start actually being a positive influence in this world rather than propagating this cold, elitist mentality that we are all too well used to…
I’m writing this because I feel like we are out of the “hurting” stage and I’m reflecting back onto those days that seemed like the world was on my shoulders. Yes, it is true….I do get stressed at times. I know its hard for you to accept (not as hard as it was for ME to accept!) but there have been times during this ordeal that have taken their toll (*smirk*). Well, in the middle of those times I have had some people give me standard christian responses and it was maddening. I had a guy my age rattle off a couple Bible verses to me shortly after Misty was rediagnosed with cancer back in early 2007. I gave a response something to the effect that I knew the scriptures but I still was a bit scared and hurting. Then he came back with some line about how I just needed to trust God more. Like, I was able to magically say, “Ok, my wife just got stamped with a death sentence by doctors I have regarded all my life, but I feel great about it.” It doesn’t work that way. It took time. All I wanted was “I’m so sorry…I have no idea what you must be going through”. But instead, his quick response really said “I know what it’s like to be in your shoes. Your problems aren’t a big deal. I don’t care about you. Oh, and…Look at me, I know Bible verses.”
When someone is grieving, don’t preach to them. Hurting people don’t need to be preached to….they just need to be listened to and loved. We need to be the manifestation of God’s love to this world. And if you are dealing wih someone who hasn’t grown up in the church…at all costs, leave the cliches at home. Like I said, Misty and I are coming out of that hurting stage, so we don’t need anything outselves. But there are a lot of people around you each day who are hurting. Do something to say I love you without saying anything at all.
PS…Please don’t get self-conscious if you have sent a card with a Bible verse…that’s not the point. The Bible has been very encouraging to us and one of the best gifts I ever got was a simple print out of significant, relevant Bible verses. That gift said “I care about you and I took time to find scriptures that might encourage you” rather than “You are messing up by hurting over this. “ It’s all about the attitude.
PSS…As hoped, today was much better than yesterday. Misty only felt a little sick today. Napped a lot, but ate well. Her MRI is on Monday, so let’s pray for wonderful results.
Today was wonderful…till about 3pm.
We got up early and made it over to the hospital for about 8:30. This is early enough that we weren’t waiting with a bunch of people already in the queue for blood-work and the such. So by 9:45 we had gotten Misty’s blood-work back and were starting on her chemo. First big point; Misty’s nurse (Eileen, who by the way literally came in to the hospital on a Saturday a couple weeks back (her day off) to give Misty a Neupogen shot. This saved us hours of waiting in an uncomfortable waiting room. It’s great to see there are still nice people left in the world!) – Anyway, she was pleasantly surprised to find Misty’s platelets well up since last time. This is good because patelets are what caused Misty to miss a treatment a few weeks back (and we expected that it could be a problem again).
So the blood is good, we get the treatment and we are on the way home – still feeling good. Now, today was the send-off lunch for my boss (Rich) and a co-worker (MAJ Togisala). Rich’s family is moving to Aberdeen MD in a couple weeks as he has taken a different job and MAJ T is off to Germany. I’ve wanted to go, but I literally haven’t been away from Misty (other than to run into the store while she is in the car with her mom and one quick trip to my office) in over a month. Since she had been feeling so well, however, I decided to go to the lunch (at Houlihan’s). It turned out very nice and I’m glad it did. Rich has been a really great boss to me and he has my utmost respect. And while he has been extraordinarily knowledgeable technically, that’s not what I appreciated most. He has been an example of a boss that cares more about the people under him than about the product he is producing. I have always felt that was the way to lead…so I always appreciated Rich. Needless to say, with everything going on, I’m quite lucky to have such a great work environment.
Here is the gallery, featuring some of the characters that I work with:
Rich Hoffmann and MAJ Togisala – Lunch
Now for the bad part. After Misty woke up from her afternoon nap, she was sick. Completely sick. She hasn’t felt this sick in weeks. She ate a muffin and fresh blueberries for breakfast, but that was the end of it. We tried to drink, but that was only marginally successful. She was quite sick all afternoon and into the evening. I’m really hoping she wakes up feeling a good bit better. Tune in tomorrow to find out how that goes..same bat time, same bat channel. (yes, I know I’m corny)
It’s about 4pm. We had just left Delicious Orchard (I run in and shop with Olivia while Misty stays in the car with her mom)and went back to Misty’s parents’ house. Misty is relaxing downstairs on the couch getting her nails done by Aunt Shirley…
I’m in the kitchen holding Olivia in my left hand and unscrewing the metal spout on a fairly nice glass punch container with my right. About half way through filling up my glass my attention gets stolen by dear daughter who has begun to lift off the heavy glass top. I sternly give a “NO, Olivia” and frantically try to ditch my glass on the granite counter so I can make my hand available to help her put it down…but it’s too late. It slips out of her hand and smashes into the side of the container sending about a gallon of fresh (and delicious) iced tea onto my shirt, shorts and the floor below me. Oh Olivia…
On another front…it was a very nice day.
Misty ate well, slept well, felt well.
Chemo in the morning.
MRI on Monday.
A few images from recent life.
Also, images from the trip to the great adventure safari.
Misty is doing good. This morning she fell off a seat and hit her head, which wasn’t great. Luckily, it wasn’t serious…just a little bump. Other than that, the day was nice. She is pretty stable around 95lbs and is talking a little bit (just a few words here and there – basically the same as a few days ago before the seizure). She is starting to get animated and make sounds to clue me in on things she is trying to say. Like today she made some noises that I could tell were imitating Tom Hanks in You’ve Got Mail (who was making a reference to The Godfather saying: “Monday, Tuesday, Thursday, Wednesday”) – it was pretty comical. From that I knew we were talking about the calendar and we took it from there. It’s nice that she is with it and trying to communicate. Her hand hasn’t really improved in the last few days, but ever other day or so she is able to move it a bit – and that’s certainly an improvement over last month. That’s all for now. We’re doing well.
I’m overwhelmed by the amount of people following here and praying for Misty on a regular basis. This blog has of course become mostly just a resource to update you all on Misty (and occasionally Olivia or other random things). Since so many are reading each day, I’m finding myself writing longer posts. This is of course a problem for the people that just visit once a week or once a month and don’t want to spend 4 hours catching up. Introduce stage-right: the quick look section (it’s in the column on the right of your screen). I’m going to keep that updated with key posts and a short sentence that gets the point across. So if you only have 90 seconds…you can still see how misty is doing and keep her in your prayers. I also added a calendar tool that lets you quickly find posts from the past. Scroll over the date and see the title in a popup.
Today was a good day. We are really relieved that her seizure didn’t turn into something worse and leave us in the hospital (like april 26). We woke up late and had eggs and potato pancakes with our usual healthy dose of fresh fruit (we eat quite a bit of fruit). Actually, we liked the potato pancakes so much I’m going to leave you the recipe. Hope you are having a great day!
German-style Potato Pancakes
What you need:
- 2 eggs, beaten
- 4 medium russet potatoes
- 1/4 cup all-purpose flour
- 1/4 cup grated onion (you can easily use less onion)
- 1 teaspoon salt
- 1/2 teaspoon pepper (if you want)
- 1/4 cup+ light olive oil (depending on size of you frying pan – you have to cover the bottom well)
Mix eggs, flour, onion, salt and pepper in a bowl. Set aside.
Peel and grate the potatoes using the large holes on a hand grater (don’t waste time after you grate these…they get pretty gross quickly). Using a cheesecloth squeeze as much of the water from the potatoes as you possibly can (this is the key to crispy pancakes, rather than a greasy mushy mess). If you don’t have a cheese cloth, just use your hands. Mix the potatoes into the egg mixture.
Heat the oil over medium high heat. Pull out some of the mixture and form it into a small patty – size doesn’t matter too much (I feel like we’re making hamburgers). Fry until the bottom is nicely browned (a few minutes probably – all depends on how hot you get the oil). Flip and fry some more (again, probably 3 minutes). Pull out and drain on a paper towels. Serve immediately with sour cream and applesauce.
It’s 5:45am and Misty just had a bad seizure…it lasted a good 20 minutes and had her whole body shaking.
I’ll write more later, but I wanted to ask everyone to pray. If she has another we are back in the hospital. I think that would destroy her spirit.
- – - – - – - – - – - – - – - -
I wake up to misty’s backhand haphazardly hitting me between my shoulder and my ear. I look at the clock and it’s 5:21am. I’m a little groggy as I didn’t get to sleep till about 3:30am (I was working on the calvarylighthouse.org website). Still it was only a split second and I’m up on my knees hovering over her trying to figure out whats wrong. This road hasn’t exactly been short and I’m long since programmed to respond quickly to these things. She mumbles a few unintelligible sounds and I notice that her eyes are rolling back into her head…and it starts. Her eyes are blinking erratically, her face is making strange twitching movements that i don’t think could be repeated unless under the duress of something like a seizure, and her entire body starts shaking.
Unlike my “I can handle it” responses in the past, the first thing I did here was pray. I do not for a second though believe we should ignore practical ways to deal with things. I have medicine for this, so I’m going to use it. Unfortunately, it’s not at the bedside. She hasn’t had a seizure in a while, and all her symptoms are improving, so I hardly expected this. I actually had to run outside barefoot and grab her pocketbook out of the car to get her medicine. I have a nasal spray Midazolam and dissolving tabs of Ativan. They are some pretty serious stuff. Well, 5 minutes or so and she is coming out of it. Both of these drugs relax the brain to stop it from sending extra electrical signals (that’s basically what a seizure is)but in the process you get a heavy dose of a sedative. So, literally, minutes after she came out of it, she was asleep and with the exception of an hour for breakfast, she slept till 4pm.
The rest of the day was wonderful. She woke up wanting to get out of the house and go over her parent’s house for dinner (who had come over at 6am to pick up olivia). She ate very well for lunch and dinner and actually came back to yesterday’s baseline function shortly after waking up (generally, with misty, a seizure like that will leave her more impaired for a while after – I say generally, but she has only had one or two others that were this bad). She felt good the rest of the day. She even played a while with Olivia :)
I’m pretty relieved that we got through the rest of the day without another episode. I REALLY didn’t want to end up telling misty I had to take her to the hospital once again. So yeah, from breakfast on…it was a pretty nice day. Olivia is spending the night over Misty’s parents’ house just in case…but I’m feeling pretty good about it now.
Congrats to my sister Shannon who graduated from 8th grade this week. Click on the picture below to see the photo gallery:
On a side note, this time of the year feels really weird. It’s the first year in many that I haven’t been out to like 9 commencement ceremonies in graduation season. My brother and I are notorious for finding tickets to these things so that we could show up and support the students we have worked with or taught in the church. We’re basically major players in the black market of graduation ceremony tickets.
Now don’t get me wrong, it’s wonderful being at home with Misty and Olivia (I have zero regrets about my current life priorities and I don’t need any validation on that one, I know I’m right) but I do miss being involved in the lives of those I care about and in this case some special young people (my part time job has been in the church for the last 5 years…mostly working with teenagers, many of whom have become great friends to Misty and me). Life as it is, doesn’t leave room for much outside of my own house. So many relationships that I care about have fallen by the wayside.
So…Shannon, I’m glad I could make it to the graduation. Sorry that Misty and I aren’t around more for you.
And on another side note (but slightly related) – Jess, sorry we missed the wedding. We love you.
Ok, so last night I kinda threw out some words to express that things were going well. Let me explain a bit more.
Misty had been gradually getting worse since about October of 2007. A couple brain surgeries pulled back some of the progression, but not much and not for long. Then on Mother’s Day of this year misty woke up much worse. She began to not understand what I was saying to her. Simple commands gave her trouble. Her speech took a huge hit and she had very little function in her right arm. An MRI taken the next day revealed that the cancer had exploded throughout the whole left hemisphere of the brain. This progression was way beyond the point of being operable and the increased symptoms Misty was experiencing seemed to track with what the scan was showing. Then, it went from bad to worse…her speech dropped to almost nothing (just yes and no, which she would mix up about 60% of the time). The doctor asked her to hold up two fingers (with her good hand) and she couldn’t…she didn’t even understand what he was asking. She was losing cognitive ability. About that time also, her right hand decreased to absolutely zero functionality (she couldn’t move it at all) and her right leg had no feeling as well. We had to carry her everywhere and stay with her at all times, scared that something terrible was up next. Her skin had all sorts of problems. Her back was covered with a scaly, dry, bumpy rash. On top of that she had the worst rash I have ever seen on her face (it was from her chemo, so we chose not to stop the medication). If I touched it even the slightest bit, it would bleed. And it was so painful…she was in agony from that.
We were faced with a prognosis of only weeks to live. Misty’s body literally showed all the signs of dying. The doctor noted that her body was “in the shutting down process”.
Well…since then, things have changed a bit. Over the last couple weeks, Misty has started to say more and more. She can’t reliably say much, but she gets out phrases and words often. She has become aware of her surroundings (she even wanted to know what day it was today) and over the last couple days has even laughed at our little girl and sat up interacting with her non-verbally. She has regained a bit of feeling in her right foot and yesterday curled her fingers 5-10%. Her facial rash has improved about 90% and it’s getting better every day. Her back is completely peeling…and the new skin is much better. These little improvements in Misty really just make this whole thing so much easier. Emotionally she is at the high point of the last couple months, so I am too.
If I asked the doctor, he would probably give Misty a slightly better prognosis, but there isn’t a doctor in the country that based on the given medical evidence, would tell misty to expect a normal lifespan (her last MRI still had a brain filled with cancer). For the first time in a long time, my doctor has predicted wrong…and I’m expecting him to be wrong plenty from here on out! You know, I used to look at the MRI as the definitive answer as to where Misty’s health was at. Today, I’m putting a little less stock in them :)
8 “For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
10 As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.