Mathematics

I went to lunch with a friend the other day. When paying the bill, she said she'd need help calculating the tip; she generally left 20%. I asked the total, which was $17. I said "$3.40", to which she stared at me, wondering how I could calculate it so quickly. I simply explained "double the bill and then remove a zero, and you're set!"

She just stared at me and stated "wouldn't you know that the person who just had a brain tumor removed is faster than I am with math". Later she shared the story with another friend, saying, "I will never be smarter than Sally, even after a brain tumor". . . I thought it was pretty funny (and not true about being smarter).

(Marti - You can also calculate by taking 10% of the total and doubling. . . Ha ha)

I've had several good days now - FYI. Yippee. . .

OK, enough rest. . . I can't do that ALL the time

They said at Mayo that the best physical therapy is just living normal life. So, I have now decided that my physical therapy will be shopping and eating out.


I noticed that my friends and family are just waiting for me to be ready for stuff, and then they pounce. When I mentioned a couple weeks ago that I would consider going to Meijer, Kayla said "How about Thursday?", and we went. I told Margie, Nancy P. and Nancy D. that I would be open to going out to lunch, they said "How about Friday" and we went.


So this week, I joined my parents on Monday, and Marti on Tuesday. Just the activity of walking to the car, walking into the restaurant, talking to the waitresses and adjusting to the various noises in the restaurant are providing great physical therapy!! As well as a reminder of how much further I have to go - Think of the feeling of accomplishment that I'll have over time when I don't get dropped at the door and do my own driving. . .ha ha. . . And what a lot of the therapy I'll get when I hit the mall someday!! (AFTER the holidays)


Yesterday I walked all the way around the block (One Michigan block is about 6+ Princeton blocks). Margie came over to walk the dogs and I wanted to go along, so I bundled up and off we went into the snow. Margie had to handle all three dogs (Gina, Paulo and her dog Chester) and asked me how far - and I said around the block. AND I made it!! When we got back, Margie asked me how far I had made it prior to that walk. I said "the property line". The look on her face was priceless. She had no idea and immediately felt guilty about taking me so far. Here's my logic: I could have walked to the end of the street and back. However, that was the same distance as walking the parallel street. So I was only adding the distance of the perpendicular streets, which admittedly did stretch the distance. It felt great. I slept very well last night.

MERRY CHRISTMAS

Definition of REST (From Snowy Michigan)

It occurred to me, after being told to "rest" alot, that maybe I didn't really know the definition. S0, here it is. I think is a good word to review occasionally. I'm still working on the implementation of "rest" . . . but trying and succeeding a bit.

REST: noun

1: repose , sleep ; specifically : a bodily state characterized by minimal functional and metabolic activities

2 a: freedom from activity or labor b: a state of motionlessness or inactivity c: the repose of death

3: a place for resting or lodging

4: peace of mind or spirit

5 a (1): a rhythmic silence in music (2): a character representing such a silence b: a brief pause in reading

6: something used for support

— at rest

1: resting or reposing especially in sleep or death

2: quiescent , motionless

3: free of anxieties

(ref: Merriam-Webster Dictionary Online) http://www.merriam-webster.com/dictionary/rest

I return to Mayo for my Three Month Checkup! on February 17. I will make an effort to REST until then and am dedicated to getting as good a report at that point as I can (BTEP Milestone?) . One Milestone will be to see an MRI that is tumor free. I am feeling better all the time and instead of my energy going into "existence" my energy is now going toward building strength and trying to "rest".

Status check: It has now been 7 weeks since surgery.

Walk: I now walk pretty good. Still slow, but straighter and more confident. I have managed to not fall :)

Head pain: My head hurts less now (headache instead of frozen with pain).

Hearing in one ear: I find that living with hearing loss is mixed. In a quiet setting I'm fine. But the more background noise, the harder it is to distinguish what I want to hear.

Face: the muscles seem to be slowly strengthening, but there is a long way to go.

Chocolate: Yes! It tastes good again.

Attitude: I am grateful to be here and I do love life. It did sink in at some point that this really was a BRAIN tumor and that I'm lucky to be alive and have my intellect intact. The physical stuff is just a project that provides great opportunity for improvement.

HAPPY HOLIDAYS!!!

Change Tools or Find New Ones to Compensate. . .

1. The Straw Story

Earlier I promised to share the straw story, which I think is pretty funny. I hope I can tell it right so you see the humor. . .


In the hospital, it seemed that nurses were constantly in my face with more pills to take. I was laying in bed, and struggling to drink from my flat and motionless position. Pills kept getting caught on my tongue. Drinking always ended up in a bath. And sitting made my head hurt. So I used straws. I was laying down, heavily drugged, struggling with my facial muscles. But I perservered and managed to drink using a straw.


Day Four - I was confident that everything was under control. But all morning, it was a major struggle every time I tried to use a straw. The nurses were encouraging and patient, "no rush. . .", etc. because it was obviously me.


Finally, I said "bring me a new straw, maybe this one has a hole". They "humored" me and brought a new straw. No problem! It worked great. So all morning I had been frustrated, thinking I was going backwards. . . and I just needed a new straw!

2. The Milk Jug

I am still resetting my vestiblar system, as my balance was messed up by the surgery. I have made great progress and just need to walk carefully as I continue to re-calibrate. When I walk, sometimes I randomly veer to the left. So one day Kayla and I stopped at the grocery store. We had two bags and a jug of milk. So when we headed out to the car, Kayla grabbed the bags and made a suggestion. Since the jug is "legal weight" (i.e., under my 10 pound limit), how about if I carry the jug of milk. Her suggestion was that if I carried it with my right hand, maybe it would balance me and I wouldn't veer left randomly. Well, it worked. We are still laughing at the uniqueness of the "balance tool".

Lesson for the day "Sometimes you need to get a new tool or find a new use for an old one"

My omission

It was pointed out that I have pictures of Gina and Paulo (in the right column), but none of Gabby. Here she is, in all her glory:

Of course, Paulo insisted on having his flattering blanket look featured. . .


And Gina needed her regal pose posted. . . a bit dark but that adds to the "mystery". .

But this is supposed to be about Gabby, right? So, here she is. .

Life Lessons from the PETS

I have been home for quite some time now and have been observing the pet world. I would like to share what I've learned. Please note that all quotations are from the pets. (Sorry Kendra, I know that embarrasses you, but it is the most effective approach)

1) Live for the moment - "what's up? Wanna lay down for awhile? ok", followed by nestling into the blankets as if for a lifetime. "What? You moved? Let me jump up just in case you wanted to go somewhere - the next room counts as going somewhere"

2) Life can change in an instant, be optimistic - "Let me outside! Really, it is important! Maybe it was snowing 5 minutes ago, but it MIGHT be spring now. Really, I promise! If you get up off the couch and walk over here I'll go outside THIS time."

3) Sometimes you need a thick skin (From Gabby) - "I'm here! Let me lay on top of you with my whiskers in your face. OH, sorry, I know you didn't MEAN to push me off the bed. Here I am again in your face"."

4) Sometimes our goals differ - We think we are on the same page but we aren't. We think we see things the same but we don't:

Gina: "Let me out - look at that", while jumping excitedly at the door

Paulo: "Just a minute, let me get out from under this blanket. Oh yea, I see it. Let me out too!!"

After both fitting out the door at the same time, they both run in different directions. . .

5) Unconditional Love - When I got home from Mayo, Gina jumped into my lap and quivered for about 20 minutes. She didn't care how bad I was feeling, she just wanted to be with me.

6) Sometimes there's nothing like a groan - Sometimes Paulo just groans. Well, since my surgery, I have groaned a lot! I have to admit that it relieves pain and stress. Sometimes Paulo and I groan back and forth, which also provides comic relief!!

7) Sometimes things can serve two purposes - Gina constantly reminds me that I need to do "Right Hand" therapy. . . by petting her nonstop! It seems rather self serving if you ask me.

But without BAD days, would we appreciate Good days?

I have had a good week. I am feeling much better!!

Good days and yes, BAD days

Sometimes I feel like I update this blog through rose-tinted glasses. I tend to be a people pleaser and more concerned about the reader's comfort than sharing the tough parts of this path I am on. I feel that I sometimes make things sound so positive that people will be lining up for brain tumors! Well, my advice is DON'T. While I want you to celebrate the great progress with me, I realize that I also have to share some of my struggles.

Sunday was one of those bad days that I expected. I had a great few days last week and celebrated getting out. I had a pretty uneventful day Saturday. But wow, Sunday hit like a brick wall (or as one of my colleagues and I learned from a client, like a brick ON MY head - now I know what he meant!!). I got up and felt ok with no headache. However, one hit at 10 am. I could barely get to the couch, as I had to stop every step for brain pain. I took a nap, assuming relief would follow. I woke up at 11:30 to even more pain. I knew that food would help, but the kitchen seemed 5 miles away. Fortunately, I had the phone with me and called my parents, who live 2 miles away. Yes, it had to be bad for me to call for help!!

Two minutes later, (well, maybe 5) they were there springing into action. Dad warmed up some soup for me (that I couldn't eat) and Mom found some pain medication for me. I didn't improve (I will spare details here) but I felt comforted by their presence and support. Mom spent the night. Even at 51 years old, there's nothing like the love of parents and being fussed over.

Today, Monday, I was very tired and weak, but back on track. And tomorrow will bring another day. Where this path will lead I do not know, but I do know that I still need all your love, support, and prayers. So keep them coming!! And I'll try to keep the funny stuff coming. . .as well as the real. (Like the broken straw story. . maybe I'll share that knee-slapper next time)

Meijer - One Stop Shopping

When I was in Princeton, I missed Meijer. There is no other store like it. It is huge and has EVERYTHING. (kind of like a WalMart superstore). So it was appropriate to be my first Shopping experience since before surgery!!

Kayla drove, and I got one of those silly electric wheelchairs to conserve energy. It was a miracle that I didn't run her over, but I eventually got the hang of it. If you have ever been in a Meijer you will understand that I would have been exhausted trying to walk the store. I felt good and we had fun picking up miscellaneous Christmas gifts. (Have to get Kendra's box sent to France early!)

To follow we actually went to a restaurant for lunch - Bilbos - Pizza and salad - yummy.

Then I had a rest in the car while Kayla went to Petco, but I felt good enough to walk through Hardings as our last stop to pick up some frozen foods.

I think this qualifies as a BTEP milestone!!! I actually had fun. . .

One Month Down. . .

Technically, yesterday was 4 weeks and tomorrow (3rd) is one month. So let's split the difference. I'm continuing to see steady (but slow) improvement. Nothing exciting to report. My head hurts less, and I can now get up from a chair and walk further before I have to stop for what I call a few seconds of brain freeze, or waiting for my brain to catch up (a throbbing of my brain with a full spasm of my head and neck muscles). I am no longer using a cane to get around but still have poor balance. I was expecting more improvement after 1 month, but am adjusting to my status and timeline. We'll get there when we get there!! Right?


Details: Some people have asked me questions about the surgery experience itself, which was fascinating. Here's a summary of what I remember/know.

I had no drugs prior to surgery. They put the brain surgeon's initials on my head (right side) with magic marker to ensure that they got the correct side. They had me on a gurney and wheeled me into the operating room. I was strangely calm. As we approached the operating room, I knew we were getting close when I saw my surgeon in the hall, and sinks outside each room for scrubbing. The nurse told me that the operating room was dedicated to acoustic neuromas (scary that so many people go through this). I heard a lot of instruments clinking. The nurse told me that she would be massaging my side every hour. The anesthesiologist put my first IV in. One of the interns was in the background to watch and he did a great job of staying out of the way! A commanding voice was in the background telling people how he wanted the operating room arranged ("move that over here, move that over there"). I was reassured by his confidence until he said "because if we need to resuscitate we need this area clear". I told the nurse that many people were praying for the entire surgical team all day. Then someone said something about a nap. I remember looking at the bright lights thinking "I have to remember this". Then I must have been out because I remember nothing until I woke up that night.

After I was asleep the surgical team had a field day. Here's what I know about:
IVs - They started a second IV in my right hand. And they started "arterial" IVs in each wrist. So I woke up with four IVs. I think the arterial IV was used to measure my blood gasses?
Blood pressure cuff - put on my right arm and it was automatic all day.
Calf compression - I had put on compression socks that morning, but they added something to each leg to inflate and deflate automatically to keep the blood flowing. I was stuck with them for several days.
Catheter - Self explanatory.
Monitors - they wired up my face and neck. The brain stem was stimulated regularly through the day to see if the signal was still flowing. This deteriorated through the day, so they knew before I woke up that my face would be weak (the term for not moving) and that my right hearing was gone. (However, they reassured me and my family that the facial nerves are intact and will heal in time.) The monitors were gone when I woke up.
Bolted head - they bolted my head into a vice-like frame to ensure that nothing moved. That was gone when I woke up, but it left three small spots that have since healed.

When I woke up, I still had the blood pressure cuff, 4 IVs, oxygen in my nose, and a clip on my finger. The first sensation that I had was extreme back pain, followed by my left side hurting and feeling hard as a rock, and eventually my head aching. I had to lay on one side motionless all day during surgery, thus the side and back pain. And the rest is history.

Rehab Tidbits. . . and the Bill

I was talking to a friend today who reminded me of how analytical I am. I was merely explaining the things I am doing to measure progress and she wondered how I thought of them. It occurred to me that you might find them fascinating, so I'll share.

1. Handwriting - As mentioned before, my right arm is weak. To measure progress, I am writing out the alphabet and signing my name regularly. It is actually improving, and I was able to write in my check register the other day. I'll post the image before and after once I feel a bit more improved.

2. Analysis - I love to analyze stuff. So I started a spreadsheet for analysis of pain meds taken in the hospital. Why? Why not, I say? I have no idea what happened on the 7th, but I assure you I had more paid meds than reflected!! (By the way, I am now off the hard stuff and managing the pain, although intense, through Tylenol and Motrin. I really hate taking anything and am resisting.)

3. Tidbits from the hospital bill. Ok, this isn't rehab, but these items seems a bit unusual and interesting. I have added my personal commentary in parentheses:

- craniectomy suboccip

- craniectomy exc of brain tumor, cerebellopontine ang (this is the long way to spell acoustic neuroma)

- screw micro auto-drive 1.6 x 4 m, 4 units (what's with Auto-drive??)

- plate ostemed str med 2 hole, 2 units (do I still have 2 plates in my head? wasn't one enough?)

- absorbable gelatin sponge, 2 each, 1 unit (I hope that has absorbed by now or I'll be accused of having a spongy brain, accurately)

- resp svc resuscitation bag (if they used this I didn't hear about it)

- router fluted 1.85 x 16 m (I don't really want to know)

- bur ball diamond 2m (I assume this is a drill bit)

- bur acorn fluted 6m

- ball diamon 3.5 mm ext (how many drill bits does it take? Does this imply that I am hard-headed?)

- probe mono prass std w/lead (what probing question could I ask here?)

- use of operating microscope, 4 units (I sure hope they could see well!! 2 were for the surgeons, 2 for surgical assistants)

- suture vicryl, 2 units

- suture vicryl (8) 2 units

- suture silk (8) 3 units (I am happy to hear that things were tightly closed up when they were done!!)

- brainstem evoked potential (I don't even know what to say to this item)

Top Ten Things I am Thankful For

10. Chocolate - this HAS to be on the list. Its only number 10 because I'm not up to my usual consumption. I am regaining my ability to eat and food is starting to taste good again. (Maybe this thanks should be for a lack of nausea, which seems to have finally gone)

9. Physical Therapy - helpful? who knows. But it feels like I'm DOING something.

8. Pets - My dogs, Gina and Paulo, Italian Greyhounds who think they are cats. And Kendra's cat Gabby, who thinks she is an Italian Greyhound. Figure that one out. Talk about companionship. They are happy to lay around with me all the time.

7. The incredible response to this blog - you have really blown me away with your comments and emails. This definitely has made this less lonely.

6. God's many answers to prayer - we can ask why the tumor, but given its existence, prayer has lifted me and provided for my family. I am amazed at their perseverance, which encourages me, and I know that God has strengthened them. And I know that things could have turned out much worse. (look at how much I can type already!!)

5. The many people offering those prayers - thank you, thank you, thank you. Whether the simple or complex version, thank you. Again you have all blown me away.

4. People who choose Health Care as their career, such as Brain Surgery. Just think - it took these two guys and their team 9 hours to remove my tumor. Amazing patience and precision. I would have had it out in 10 minutes and left the poor patient reeling with problems!!

3. My family (see below) and my friends, who have been incredibly supportive. (and who have provided great food!!)

2. God's Plan for my life - Clarity normally comes after adversity, rarely in the midst of it. I am still very much in the middle now and look forward to some day looking back to see a purpose. I know it is there.

1. Faith - without it I wouldn't have the track record that has shown me in the past that there clearly is a plan. Sometimes Faith steps in when feelings fail. I can't and won't pontificate grandly on why this happened to me and currently admit a preference to self pity over a bigger grander purpose, but I do know that God is here.

I am grateful for much in my life, but this list should give you an idea of what I'll be thankful for this Thanksgiving.

HAPPY THANKSGIVING!!

Sally

One small step for mankind, one LARGE step for me

Three weeks out from surgery. I keep reminding myself of how far I've progressed. That helps me find patience and energy for how far I have yet to climb.

I am now living independently. I can't say enough about my family. I appreciate them so much. However, they have been so helpful that I'm now able to live alone again. That is, with their daily visits and steady phone calls.

Kayla, Dad and Al were great company going out to Rochester. We had fun following each other in two cars the day before surgery. It was 72 and very warm on that Sunday. We just hung out together, sitting outside the hotel on their patio, enjoying the last of the wonderful fall.

The three of them were great comfort at the hospital and they were on my mind when I woke up, knowing that they had held vigil through that long day. And I knew that you were all waiting anxiously that day for Kayla's blog updates. It was important that evening, after surgery, to connect with them and let them know that it was still ME inside. That morning we were joking about having dinner that night together at the Canadian Honker - our usual avoidance humor. So when my family came into the ICU I think the first thing I said, while laying all wired up and immobile, was "I won't make dinner tonight". At first Kayla looked confused, but then she realized that I was actually managing a joke after 9+ hours of surgery. The connection was made. Followed by Al analyzing every monitor that they had on me until he was satisfied that his little sister was ok.

Al went back home after a couple days to take care of things back at the home front. Kayla and Dad stayed with me at the hospital for the long haul. Kayla spent the nights with me, for which I will forever be grateful. Dad was a great comfort every day. The hotel was right across the street from the hospital, so they were able to go back and forth as needed. Within a day, Kayla had everything figured out - where the linens were and where to find jello for me. Oh, and I have to acknowledge the ice chips that I was constantly craving and sending her for.

The people at Mayo were amazing. A day didn't go by when I didn't see 3 to 6 doctors, each coming in separately or in bunches - and never in a hurry. They always waited until they knew I had asked all questions. And they've called twice since I got home. The nurses were incredibly nurturing - I would NOT want their demanding jobs!! I will go back at three months and can't wait to see the MRI done at that time with NO brain tumor!!

Some of you have asked me what I was thinking by going all the way home (8 hours) after being released. I was clearly thinking that I wanted to go home. Yea, Yea, I know they recommended staying in Rochester for a night. But what the doctors didn't know. . . I knew that if we went across the street after being released I would just wonder how the car ride would go the next day. So I suggested to Kayla and Dad that we should just head out. If I didn't feel good, we would stop - even if it was an hour or two down the road. I will never forget getting in that car, and sitting in the backseat with my eyes closed tight, just waiting to feel sick. But that never came. In fact, I opened my eyes eventually, and still felt good. Well, once I was in the car, and comfortable. . .why stop? Kayla kept me on pain killers, and eight hours later I was home.

I will never forget my family greeting me. I was a pretty sad sight. My mother's hug was never better, and Mom quickly took over as my caregiver. I was delighted that, even though we arrived at 10:30 pm, my brother Al was there to greet me, as well as Kayla's husband Mark. They all made sure I got up my stairs safely. And little Gina jumped up on my lap and just trembled for a long time. Paulo looked at me with his sad eyes, and seemed to feel my pain. Home at last.

I was so weak when I first got home, that I couldn't sleep with the pets. But whenever they could, they would race up the stairs and lay quietly with me for hours. It is nice to be back to normal now with them having free access in the house.

I will also forever be grateful for Kendra's support from France. For those who might not know, she is teaching English to little French children in the middle of France this year. We talked on the phone every day. Even though I only had the energy at first to say hi, she was incredibly encouraging as she recognized my progress every day over the phone.

As for the blog, I have been overwhelmed. I created it so that Kayla could update many people spread out through the world. However, I never expected the response from everyone. I couldn't even move in my hospital bed, but I had Kayla reading every one's comments from day one. I can't tell you how meaningful it was for me to know that so many people cared. It really kept me going and feeling less isolated. Though there were times when you were all encouraging with my progress and I was thinking "you have no idea!!" (I think that's the overachiever in me)

OK, a bit sappy today. But necessary. I feel that I have made a giant step by reaching this milestone of independence, and I had to say thanks - hoping that you are still watching this blog!!

SLOW is the word of the day

It is like the brain surgery drained the energy out of me. At the end of the day I am exhausted. Then I reflect on the day and recollect that going down the stairs was the biggest event. I can't explain it. I did make it to the end of my driveway on Wednesday!!

I am doing better every day. But better is relative to how far I fell off the cliff. . .

Late, but consistent with my theme of slow, and due to popular demand, here's a picture of the slippers.

Pretty styling, not to mention the pj's.

WARNING - not for the squeamish.

This is before the staples were removed. They were taken out on Tuesday. It did not hurt because Mayo send a special removal tool with me for my doctor.




As you can see, it is already growing back and we'll probably only see the bottom part of the scar over time.

Two Weeks Out

Hi everyone,

Thanks again for all the notes of encouragement.

We are now in the patience part of the project, and that requires time. I have learned and been told that time cannot be sped up.

But everyday is a little better, which I can tell.

I am now catching up slowly on email, so feel free to email me.

Sally (sallygoostrey@att.net)

Happy Friday

Doing ok today. I am learning patience. I can safely say that I have never done anything this hard. I can now explain what it must feel like to have been run over by a bus - twice!!

Today, though, I can say I feel good. Really.

Regarding my prognosis: I will return to Mayo in three months to evaluate my progress.

Damage: Right facial weakness, Good news is that the nerve is intact. Part of the weakness is from brain swelling and part is from nerve damage which will improve over time. What we do not know is how long or how much will return. Facial weakness means that the right side of my face doesn't work right: eye doesn't close and my mouth doesn't work right. Think of all the money I will save on BOTOX in the future with no wrinkles!!

Damage: Right arm weakness, Good news is that it will strengthen with time. This weakness is because they had to move part of my brain (Cerebellum) aside to get to the tumor.

Damage: Right hearing gone, no good news here. My left ear will herefore only choose to hear what I want to hear so you'll have make it worth hearing (grin)!!

Damage: The Brain Tumor has been eradicated. No good news for the tumor, which now lives in a research lab in Mayo and was confirmed to be benign. They got it OUT of my head. That is only great news to all.

So you will notice the theme here is time. LOTS of it. Along with the life lesson of patience.

Sally

Hello World

For you programmers out there, you will remember how exciting it was the first time you got a computer to say "Hello World" through programming.

That is how I feel right now getting online for the first time since brain surgery.

First, thanks. I hope you recognize how many feelings are in that word.

Second, typing this has taken a long time. I now appreciate you "hunt and peckers". My fine motor skills are at a low point that will take a long time to reskill.

Third, I am learning patience.

More later. Love, Sally

Tuesday

She was released yesterday at 1:30ish and we were on the road at 2:00pm. We made it home last night about 10:30pm. We had great driving weather and the delay in getting out of the hospital put us in Chicago just after rush hour, so we had very few delays. We stopped three times - twice to get more pain meds into Mom and once for food. All in all... an uneventful trip after a very eventful week!

Mom is at home and resting now...trying to sneak Gina and Paulo into her room with her without Grandma catching her. She called me this morning...sounded good and very happy to be home!

Tuesday was a restful day at home after the long trip home on Monday. Grandma and Grandpa are staying with Mom during the week - Mark and I will stay with her this weekend to give them a break. Grandma has organized everything, gotten Mom settled in comfortably, and finally let Gina and Paulo visit with Mom for a bit.

Monday

We are hopefully heading back towards Michigan today. We will also have to see how Mom does in the car and what time she is released - both factors in how far we make it toward home today.

We are all ready to be home!

Sunday

Mom is resting well and every night the nurses let her sleep longer. She is beginning to take fewer narcotics and transitioning some to other types of pain medicine. This morning the nurse helped her with another shower, which felt wonderful.

Grandpa and I are sleeping well, but both suffering from a bit of a head cold we have picked up somewhere. I am sure it is a result of the quick transition in weather and the dry winter air that has settled in here. I found the laundry facilities today at the hotel - free washers, free dryers, and free detergent - a pleasant surprise.

Saturday

Another good night. There was talk today that Mom may be released tomorrow or Monday - it all depends on which doctor we talk to. There is no lack of doctors who are taking an interest in her case, after all it is a teaching institution.

Mom is struggling with patience. She is also discouraged at how hard it is to just do simple things when you are trying to recovery from brain surgery.

Happy Saturday from Sally. Today was a slow "doctor day" because we only saw five doctors...must be a weekend. Mom took a long nap after lunch that seems to have re-energized her. Tonight the plan is to go to a movie, get frozen cokes and popcorn - ok so maybe it will just be on demand movies with orange sherbert, but we will have fun!

I am still staying with her every night and Grandpa comes over all day. I am able to get away for a couple of breaks while he is here and we go out for lunch together after Mom gets her lunch. Al went home to check on Grandma, who is watching Gina, Paulo, and Gabby.

In all the excitement, I realized today that I failed to mention that Mom had a shower yesterday. She said it felt really good, but was exhausting. Today we counted her staples, 29 in total to close the 5-6 inch incision behind her ear.

Friday

We woke up to a winter wonderland this morning. It was a good night and we both slept well. The nurse last night told us how we could get on demand movies, so we checked those out before bed...or at least part of a movie as neither of us could stay awake for it.

Today the goal is movement and lots of it.

Thursday

Mom slept well last night and the nurse allowed her to sleep for longer stretches at a time. The doctors seem to have found a pain medication combination that makes the pain bearable for her. She has also begun to eat soft foods, which is a step up from the clear diet.

She has four walks planned for today. We will start small and work our way up as she can tolerate it. She is looking forward to wearing the slippers she got for the hospital on her walks and impressed the nurses yesterday with them when she moved to the chair.

She is constantly reminding herself that this requires patience and time to heal.

12:00 pm - It is lunch time and Mom has sat in the chair next to the bed since breakfast. She has also walked to the door and back twice already - two more walks to go!

5:30 pm - Well...so much for being an over-achiever. Mom was done with 3 of her 4 planned walks for the day, then her doctor came in, saw how well she was doing and added two more for the day. Now she just completed walk 4 of the 6 required. This afternoon they also sent a chocolate milkshake for her, which was probably one of the first good things coming out of the kitchen other than jello!

Wednesday

Mom had a really good night! She was able to get a lot of sleep after they switched her to a new pain medication. The new medication doesn't cause as much nausea as the previous stuff did either. The nurse woke her up every couple of hours to take her vitals and give more pain medicine, but she was able to quickly fall back asleep when the nurse left.

Her evening nurse was nice enough to show me where I could get ice chips, linens for the cot, and towels last night. That allowed us to be a little more self-sufficient and not as dependent on the nurses for the little things like that.

Today the doctors took her bandages off and the incision is healing well. We were also able to wash her face and arms with a wash cloth I found last night. Later today they are going to get her up into a chair.

For those of you wondering about her new hair-do...there is a narrow strip about two inches wide or so that is shaved with an incision that is several inches long behind her ear. It is a much smaller bald patch than we were initially thinking.

4:30 pm - Mom sat up...then stood up...then sat in a chair next to the bed. She experienced minimal dizziness and was able to sit up for 10 minutes before moving back to the bed. The doctors and nurses are telling us patience is important and it will just take time.

The Day After

Mom is doing very well this morning. She was able to get as much rest last night as possible considering that she is in the ICU and they woke her up every half hour or so. Both of her surgeons stopped by this morning for a quick check-up and their interns came earlier for a more thorough evaluation.

She is struggling a bit with dizziness, nausea, and pain. These are common issues with accoustic neuroma patients. They are giving her meds to help with that and so far has been able to keep the pain pills down. She will be moved to a regular room later today.

10:30 am - Mom was just moved into a regular room on a neurological floor. The move went well and she made it up to the next floor with minimal nausea. She is in Room #9-714 in the Mary Brigh building. She has a great view of the helicopter pad from her room. This will be her room until she is ready to head back home. The two bites of Jello that she tried went down well!

1:00 pm (From Sally) - This is boring, because I can't move without nausea setting in! My brain is still in here and functioning. Kayla is reading the comments to me - thank you so much for all the encouraging words!

5:30 pm - One clarification from earlier...Mom was not actually on the computer, but asked me to write a quick note to everyone for her. She is still struggling with pain and nausea. I will be spending the night with her tonight, since she is on a regular floor with less monitoring and we anticipate a bit of a rough night.

Surgery Day

After an uneventful night in Mom and my room, we found out that on the other side of the wall (aka Grandpa's and Al's room) there was a bit more excitement throughout the night. First, the battery in the smoke detector blew up - sounding like a gun shot and waking them both. Second, the light between the beds came on all by itself and caused them both to stare at one another wondering what the other was thinking turning on the light like that. Finally, after a night like that what do you want - a nice cup of coffee... and what do you know the coffee maker doesn't work.

On to the serious stuff...

3:30 am - Yes, you guessed - we were up. Mom got a few hours of sleep before waking up at 3:30am CST. It really didn't help that the time just changed and we are in a different time zone.

5:45 am - We reported to the hospital lobby and got in the long line to check-in/register.

6:00 am - Escorted upstairs to the pre-prep room for a quick review of her health history and a double check of her name and date of birth (for the third time this morning).

7:00 am - The escort arrived to take her way to the prep room where she will get her IV and such to prep for surgery. This is expected to be around a two hour process by the time they get all of the sensors connected to monitor the critical nerves in the body. Grandpa, Al, and myself are now doing our best to wait patiently in the surgical waiting room.

8:17 am - She entered the OR. At 9:15 am someone came to tell us that she was asleep and the final preparations for surgery were underway.

9:18 am - Surgery began. We will be updated in a couple of hours on her progress.

10:15 am - We went out to lunch. At little early, but after getting up at 3:30 in the morning we were ready for some food. Last night we went to The Canadian Honker for dinner and it was such a hit we decided to have lunch there - after all, we do have a little time on our hands. And while some would wonder at the name, the food is excellent.

11:45 am - We have been moved from the 2nd floor waiting room to the ICU waiting room on the 8th floor. No real update on surgery, except that it will be "hours" which is something we already knew. The waiting continues.

12:15 pm - Nap time for Grandpa, Al, and myself.

1:00 pm - Phone rings in the waiting room with an update...we all wake up. She is doing very well. Once again we were told to get something to eat if we are hungry and that they would contact us again in a couple of hours with an update.

2:45 pm - She is doing very well. Our surgical communicator said it shouldn't be too much longer - meaning it could be less than 2 hours at this point, but she didn't want to commit to a definite time.

3:20 pm - A different surgical communicator came to visit us after relieving the previous surgical communicator. She indicated that 2 hours, at this point, is optimistic. However, she did say that we will be meeting both surgeons after Mom is moved to recovery (hopefully around 5:30 - again optimistic). From that time, Mom will be in recovery for at least one hour before being moved to the ICU. Once in the ICU, it will take 15-20 minutes to get her situated and the monitors connected before we will be allowed to see her.

4:50 pm - The surgeons are closing and they should be ready to meet with us in about 30 minutes.

5:40 pm - The surgical coordinator came to get us to meet with the surgeons. Mom is in recovery and we will see her in a couple of hours.

5:45 pm - Grandpa, Al, and myself met with surgeons...

She made it through the surgery well. She will not have any hearing in her right ear. The surgeons said that the tumor was very "sticky" to the brain, brain-stem, and facial nerve. Only time will tell.

9:00 pm - We finally got to see her. She is in ICU for the night and doing extremely well according to her nurse. She was talking to us and her sense of humor was already coming through! Now...sleep for all of us.

Welcome to Rochester

STATUS: I will be reporting to the hospital at 6 AM CST Monday am for admission and surgery prep. Kayla will take over updates for me until ??

I really can't think of anything witty to say at this point. Scared? yep. Appreciative? Sure am. Strong faith in God? Absolutely.

I hope to be back online soon!!

==========

The caravan arrived in Rochester, MN this afternoon around 3pm CST. This gave plenty of time for a quick walking tour for, believe it or not, more speculation about where I will specifically be in the massive hospital tomorrow for surgery and afterwards for recovery. The drive went well and despite the clouds, I snapped a few pictures while driving and upon arrival here in Rochester.

The Patient - Before. . .

St Mary's is HUGE. This is the main entrance.

The Main Entrance to St Mary's Hospital

Home Away from Home in Rochester for Kayla, Dad, Al

Oh, and here's the Sears Tower as we sped by on I94

Sunday Road Trip!!!

Today we hit the road. It is about an 8 hour drive from Kalamazoo to Rochester, west through Chicago.

More from Rochester. . . .

BTEP

Today something a bit silly. . .

As you know, my background is computer science and I've spent my career in Information Technology management, surrounded by acronyms for projects and systems. I think we need an acronym for this project. Therefore, today I am announcing the launch of the BTEP - Brain Tumor Eradication Project. For non-IT folks, acronyms can be either pronounced or spelled. So it is perfectly acceptable to say "B.T.E.P", or to say B-TEP. There are some acronyms in the world that are picky, like SAS (say it SAS), or SAP (Say it S.A.P.). But since this is my acronym, I say that either is fine.

Yesterday's BTEP Milestone? Haircut. You may ask yourself. . . "She has a brain tumor and she's worried about her hair?" Well, yes. There are some really big issues here that I have no control over. But my hair? That I can have some control over. The surgery will require not a full shave. . . inhale, exhale, sigh of relief! But there will be a patch behind my right ear that will be shaved. No idea how much.

So after much analysis (there are downsides to being so analytical), speculation of the diameter of the target bald patch, and consultation with a professional (Kris at Folio in Kalamazoo), we decided to stick with longer hair to hopefully cover the still undefined bald spot, and to go with lowlights (i.e., darker hair) to minimize root growth for the three recovery months that I cannot do anything to my head. After all, a girl has to feel good about her hair before going into brain surgery, right?

The countdown continues. . . and you can now see why I included a prayer request for this week to help me maintain my sanity :)

Have a Happy Thursday!!!!

p.s. Kayla - I sure hope you are gearing up to be this entertaining with my surgery updates :)

For the Love of My Country

Something a bit lighter today. . .

As the election draws near, I am sick of politics (as is everyone!). However, every time I hear the COUNTDOWN TO ELECTION DAY, I just subtract one for my surgery date. . .

The reason I am having surgery on the first possible day in November is because one of the brain surgeons has jury duty for the last two weeks of October. . . go figure. . .

Thanks for all the great comments and notes yesterday. It really is incredibly helpful and inspiring to know that so many people are out there caring and praying!!

What can you do?

Everyone wants to know what they can do to help. I have been overwhelmed by everyone's concern and notes - seriously. One thing you can do is keep those notes coming. I will need them post-surgery to keep my spirits up. Kayla will be posting updates to this blog, and will read any posted comments to me until I am back online again. (Please sign your name to comments posted to this blog if you use the anonymous option!!)

Many of you have offered to pray for me and have asked what to pray for. Well, as it turns out, unless anyone can take my place at Mayo, it appears that prayer is just about all you can do to help at this point.

I accept all prayer offers!! He is listening. . .

Here's what you can pray for. I have included a simple prayer for beginners. I have also provided complex and specific detail for prayer warriors.

Option One:

Simple "Dear God, Please help Sally get through this and have a full recovery".

Option Two:

Complex and Specific

This week

• I need to stay healthy and not get any colds or flu
• I need to stay sane

Sunday (November 2)

• Safe travels on the 8 hour drive to Rochester MN (Kayla, Dad, Al, and I)
• I hope to get some sleep on Sunday night before the early surgery on Monday

Monday (November 3)

• Successful surgery at St Mary's Hospital in Rochester (full day of surgery)
• Pray for the surgeons and the surgical team. (See below FAQ's for their urls)
• The surgeons prefer that the tumor come away from healthy tissues easily (not sticky - the technical term that they used)
• We want the nerves left intact following the tumor removal(Facial muscles, facial sensation, hearing)
• No spinal fluid leak following surgery (they need to get the skull sealed well)
• No impact to my brain stem which is pretty necessary for life.
• Of course, we want full removal of the tumor
• My family will be hanging out for a long day and need patience (I have the easy part that day - stay unconscious)

Post Surgery (Monday night and beyond)

• Minimal pain (there is a limit to pain med allowed so they can determine how I am doing without having any issues masked by drugs)
• That I will quickly regain balance (the docs say that my right balance is gone and has been picked up by the left side. We hope that means that balance won't be a big issue if that transition has already taken place)
• Minimal or NO facial nerve impact. There is a forecast of some facial muscle "weakening" that I should regain soon after surgery.
• The forecast is no remaining hearing on the right side. However, at least some hearing preservation would be greatly appreciated by me even though it is a long shot.
• Reduced ringing in the ears. While it seems illogical, even though I will lose hearing, there is a high likelihood that I will still hear ringing. Go figure. . .
• I will have to learn patience and to accept help while recovering. I predict that this will be my biggest challenge.

FAQs (Frequently Asked Questions)

1) How did we get here?

For the past few years, I've noticed a decrease in hearing on my right side. I also have noticed an increase in the ringing in that ear. I decided to get my hearing checked out to confirm what I thought I already knew - just getting old and years of cell phone and airplane abuse. However, what I learned is that I have a brain tumor, called an Acoustic Neuroma. The docs say that it is NOT due to cell phone usage. But I have my doubts given that my usage dates back to bolted-in car phones with crackling back in the 90's.

My Kalamazoo doctors immediately referred me to Mayo Clinic in Rochester. On October 3, Kayla and I visited with two impressive brain surgeons to determine my treatment plan. We scheduled surgery for November 3. . . now only a few days away!!

The Surgeons:
Link: http://www.mayoclinic.org/bio/10455272.html
Driscoll: http://www.mayoclinic.org/bio/11406518.html

I will be leaving with Kayla, my dad (Fred) and my brother (Al) on Sunday, November 2. My mom (Mulraine) will be here in Kalamazoo fussing over my two dogs and cat. Kendra is in France where she'll be checking in regularly to provide support.

2) What the heck is an Acoustic Neuroma

First, it is a huge relief to report that an AN is BENIGN. It is a well recognized tumor when seen on an MRI image. There is a great association dedicated to this type of tumor. It is called, coincidentally, Acoustic Neuroma Association, http://www.anausa.org/ . Being an analyst, I spent a lot of time researching many sites, including some with videos of the surgery. The ANAUSA site provided great information, as well as posts from people who have also gone through this "adventure".

I borrowed the definition from their site, which follows: "An acoustic neuroma (sometimes termed a vestibular schwannoma or neurolemmoma) is a benign (non-cancerous) tissue growth that arises on the eighth cranial nerve leading from the brain to the inner ear. This nerve has two distinct parts, one part associated with transmitting sound and the other sending balance information to the brain from the inner ear. These pathways, along with the facial nerve, lie adjacent to each other as they pass through a bony canal called the internal auditory canal. This canal is approximately 2 cm. (0.8 inches) long and it is here that acoustic neuromas originate from the sheath surrounding the eighth nerve. The facial nerve provides motion of the muscles of facial expression. Acoustic neuromas usually grow slowly over a period of years. They expand in size at their site of origin and when large can displace normal brain tissue. The brain is not invaded by the tumor, but the tumor pushes the brain as it enlarges. The slowly enlarging tumor protrudes from the internal auditory canal into an area behind the temporal bone called the cerebellopontine angle. The tumor now assumes a pear shape with the small end in the internal auditory canal. Larger tumors can press on another nerve in the area (the trigeminal nerve) which is the nerve of facial sensation. Vital functions to sustain life can be threatened when large tumors cause severe pressure on the brainstem and cerebellum part of the brain. Tumors are typically described as small (less than 1.5 cm.), medium (1.5 cm. to 2.5 cm.) or large (more than 2.5 cm.). "

3) OK, so it is what it is. And we are where we are. Now, how do we get rid of this thing??

There are three treatment options.

First is to watch it over time to see if it is growing. That was ruled out for me because it is too big to ignore, given how long it took to find. It was also noted that my YOUNG age requires treatment (young being specifically stated by the surgeons multiple times). And I am having symptoms that indicate that it is interfering with my quality of life.

The second option is to use Gamma Knife radiation therapy. This is a treatment that zaps the tumor and kills it. It may or may not shrink over time. But it will not grow. That option was ruled out for me because of the location and size. My tumor is pushing back into the brain, and up against the brain stem. If radiation was not successful, it would be very difficult for the doctors to go back in and remove the radiated tumor, which would be more adhered to the healthy tissues.

The third option for Acoustic Neuroma treatment is surgery. This is obviously the most invasive and traumatic to the body. But it is also provides the most complete removal of the tumor. There is a chance that they may have to leave remnants of the tumor attached to nerves in order to preserve the nerves. However, those remnants will not grow because they are benign and their blood supply will have been removed.

4) OK, so surgery is the treatment of choice. What's the project plan, projected milestones and deliverables?

The surgery is actually referred to as a craniotomy. A section of my skull right behind my ear will be removed. They will GENTLY push aside the healthy brain as required to access the tumor. Then the surgeons will spend hours carefully removing the tumor, bit by bit. They will work very slowly to peel it away from the facial and auditory nerves, as well as the adjacent brain. The difficulty is based on how "sticky" the tumor is.

Milestones:

• Surgery - all day Monday, November 3
• ICU - for a day or so following surgery
• Hospital - for up to a week
• Discharge - followed by at least one night in the Rochester area.
• LONG TRIP HOME - followed by a lot of rest, sleep and rehabilitation of anything that needs recovery. (balance, facial muscles, etc.)