A Better Day for Dave.....equals better for me too.

Pictures: Dave at the campfire last weekend; Catherine and Dave getting some rays; trying to get Dave to smile; working on mom's new bedroom.

Dave got up around 11 am and was very talkative. He had a good breakfast and watched TV. Catherine came over to stay with Dave in the afternoon. They got some sun and she took him for a ride in her new car. It was a beautiful day for a ride. I helped mom late afternoon. We went shopping for a new TV, microwave, and some rugs. Then I got to see her progress. We made her bed and got some other ideas for her space. It will be cozy when she's all done. Dave took a nap from 5:30 til about 8:30, ate a small dinner and he's ready for bed. All and all, it was a pretty good day.

peace, love, groove

Over the hump

Geez, it's Thursday already. Yesterday Dave slept most of the morning and got up around 2 pm. Our friend Kristin stopped by some high school pictures. It was fun to look through with Dave and Tim...."who's playing drums?" Dave went out on the deck with Tim while I did some errands. Then we decided to watch Ironman 2. So Joni picked it up on her way over. We had dinner while we watched. Dave ate pretty darn good. He watched the whole movie, but was very tired when it was time to go to bed...10:30 or so. Phil and Loni stopped by early evening too. They leave on a trip today. Safe travels and a toast to good fun you 2 kids (hee hee hee).

We cancelled appointments with radiation and oncology Thursday and Friday. The palliative care NP is coming by Friday morning. We need to look at what hospice can offer us. Since the nephrologist said 4 to 6 months for Dave's kidney function, it's appropriate to review all of our options. I'm putting in for my leave today. Decided to take 2 1/2 weeks the end of October so I have some left over. My manager said I can take it whenever I need to. That means 2 weeks of work and I have some breathing time. I was thinking about having a small Halloween party.....you never know around here.

peace, love, groove.

2 crazy days....for me anyway

Feel a little guilty focusing on me.....but 2 crazy hell-like days for me! Monday was so busy with work...out the door by 8:30 am to meet with another rep and then inserviced from 1 to 3 pm. Upon getting home I found out Nikki and Ruthie had a dog fight in the back yard and mom could hardly get them apart. Nikki has scratches and a couple puncher wounds around her eyes. Ruthie has 3 puncher wounds in her back leg and wasn't walking on it until this morning. Poor Ruthie. Anyway, we have the best Vet. They know what we're going through and when he called me back and talked about it he wanted to start antibiotics right away....so he put them out in there mailbox for me to pick up. Kevin came over to sit with Dave and we got them started last night. Both dogs are much better this morning. Wow! We are lucky. We sat out with Kevin for awhile and then came in for dinner and Dancing with the Stars! About 8:30 I got a text message about an inservice and it made me think...should I check the date again? I had it in my calendar on Wednesday and it was really Tuesday. Oh no! Quick call to mom and the Kings, need extra coverage. Dang, I shouldn't have had those beers.

Back up this am to be out the door at 8:30 and home after 5:30. So glad the day is over. Edd stopped by to visit with Tim, Lindsey and Dave this afternoon. Catherine and Joni stayed with him this afternoon while my mom got some things moved. Dave's napping before dinner and (guess what?) Dancing with the Stars results.

Tomorrow is another day......peace, love, groove

Fall is here

Yesterday the Maki and Rasmussen's came over for the evening. We had pasties, chicken thighs ala Mark Maki and fresh green beans for dinner. Lot's o'snacks. Then we looked through a bunch of family pictures. Quite a few laughs! Many more to go through. Dave slept very well last night. I've gotten 7 to 9 hours sleep the last two or three nights. Only getting up once during the night.

Today I did some laundry and work. Dave got up around 10, took a nice nap at 2 and then the Mierau's came over for a short time so I could get to the store for a few things. They also helped me get Dave in the shower. He did better than I thought he would getting in, very tired when we went to get out. Gotta see if we can get a homecare aide to come in twice a week and help us with that. I'm getting ready to make a large porter house steak for us to share for dinner. Started working on trying to get the last 2 1/2 weeks of October off to stay home. That's only 2 1/2 weeks away. Hoping it will work out.

peace, love, groove

Pictures from Chi-town

Pictures: Our best Bloody Mary in Chicago; view from the Trump Tower; Al, Loni and Lee at Trump's place; Lee and Loni by a church; the last martini of the night; breakfast with the Burns (sorta); Loni and Al outside the famous Underground Wonder Bar.

Chili Day

It felt like a chili day to me, so I picked up the fixin's on the way home and start some chili about 5 pm. Dave did okay today- up most of the morning and was napping when I got home. He got up about 5:30 and wanted to go out in the back back. So we had Friday night nail care-spa time in the back yard, but it started to get cold. [FYI- just read whitening tooth paste will whiten finger nails...we tried it and it seems to work.] Came back up to the front yard and started a fire. Dave had a good amount of chili and some great desert Julie brought him this afternoon when we got inside. We're watching some TV, pills and then to bed. Tomorrow we're going to have family over and start going through pictures...memories and hopefully some laughs.

peace, love, groove

A different kind of day

Dave got up pretty easily around 10 am. I talked with him last week and we decided to get some funeral planning done, so Phil went with me to Starks. It was hard but necessary. I feel really good about talking out the process and knowing the ball park for cost. Everyone was so nice to us and I think I have a good idea how most things will go. I have no idea how anyone does this in 2 to 3 days..... but I know a lot do. I'm too much of a planner. More to come on that later....much later. My mom found an apartment today. It's just 5 to 6 blocks away, small and cute. We'll start moving her next week. Dave and I got a nice nap from 4 to 6. It's been hot today.

Yesterday Lindsey, Tim and Joni helped me move some furniture around so the wheelchair is easier to get around. It felt good to get the living room better organized. They also suggested taking the door off of the bedroom and that makes such a big difference. Then Tim and Joni joined us in the back back yard for a real fire....the first of fall.

Dave has been using the wheelchair more. Had his last PT visit today. We'll try to help him remember to keep up some exercises. MD appointments next week. Will write more often.

peace, love, groove.

Finally......pictures!!!!!

Pictures: Dave likes to put his pillow on his head; honeysuckle is in bloom; basil and parsley.

Dave getting IV fluids at the oncology clinic; Chuck and Scott visiting with Dave Labor Day weekend, bringing the campfire to the front yard.

Labor Day and our flag; Dave at the beach; Tim and Phil waiting for the great sunset; the sky; Dave getting fluids at home; it's raining outside.

Nancy boy likes this box; Tim and Dave by the fire: Nancy boy likes Dave; Dave's halo-again.

Morning glories in the back yard; sunflower; Dave reading about the new heater.

Dave by the fire; the first fire of fall; Dave, Ruthie and Joni.

Tuesday....storms are coming

The storms are coming over the lake. Lots of wind, thunder and lightening. Dave's watching "dancing with the star" with me. It's a dream come true! he he! Tim and Joni stayed with Dave and mom today. Edd stopped by too...I missed him. I had 2 inservices in Muskegon. Dave napped a lot while I was gone. I have to be up by 6 and on the road by 7 am. Early night. Will have time to catch up on stuff tomorrow night and Thursday.

peace, love, groove

Monday...already

Sunday was a busy day. I got Dave out of the house and we went to Lowe's to get a propane heater for the deck. He got in one of the power carts and ran into a few corners...oh well, it was fun. When we got home I took him in both back yards while I mowed them. The morning glories are beautiful on the new fence. I took pictures...but haven't gotten to uploading yet. We finally got the heater working this evening and sat out with Kevin for awhile. Dave was exhausted when we came in. Just got him to bed. Hope he sleeps well tonight. The next 2 days I have inservcies in Muskegon. Tim and Joni and my mom are staying with Dave. May be too busy to post tomorrow...I promise the pictures are almost here.....almost.

peace, love, groove.

Time flies

Thursday Dave spent the afternoon with my mom, Joni and then Tim came by. They continue to work on selling some of Dave's equipment on eBay. Dave didn't get much of a nap. Friday Tim and Lindsey came by for the afternoon and I think they had some fun. Of course there's always the exciting eBay bidding to watch. :)

Dave had to urinate a lot last night, we were up every 1 1/2 to 2 hours and it looks like he may have a urinary tract infection. I let him "sleep" until 2 pm. Just called the on call MD and got some Cipro. I don't leave Dave alone anymore, so Phil is picking up. Thanks!

I'm working pretty hard on photos and clearing memory on my computer. Plan to finally upload pictures today. And I'll get better at posting. Sometimes I don't know where the day went. :)

peace, love, groove.

Another day and promise of hope

I just couldn't get up at 6 am....finally at 6:21 I did. Got Dave up to the living room and dressed, took a quick shower. Julie came by to help get Dave to the car and off to radiation we went. The whole halo application went so much smoother this time. Dave got some morphine and ativan and slept most of the morning. Because they were only targeting 1 tumor the planning went a little quicker and Dave went back down about 2:15. When they were done, the halo came off and they held pressure with ice packs for 30 minutes. Dave's getting more steroids this time because of his short bouts with confusion after the first procedure. He's also getting the Tarceva side effect "rash". Some oncologist say that means it's working....I can't find anything on line to support that. We'll just have to see.

Anyway we got home about 4:30, Dave napped and just had a tomato and a Healthy Shot for dinner. We'll be in bed soon. We're both pretty exhausted.

Thanks to all for your support and kindness. We're so thankful and just keep going one day at a time.

peace, love, groove

Hope Eternal

Today Dave had a "parade" of caregiver friends watching over him while I went to a work meeting in Livonia. I told him when I left that they would be good for him to discuss the radiation treatment with. He called me about 11 am (I walked out of my meeting to answer) to tell me he wanted to go ahead with radiation one more time....to help him feel better. I feel relieved that he was able to think it through and decide for himself. Although it is "us", it's more about him now. I'm the supporter with all of our friends and family. He is such a CW!

We go in at 7:15 in the am....all day at the hospital again. I'll leave for awhile to work. Julie and Joni are coming by. Thanks to all our friends who brought the positive thoughts of hope back to us. It's an up and down fight. Although we may know the ending point, the journey continues.

peace, love, groove.

HOPE

After the nephrologist appointment today, I've been thinking....what is hope? Lots of things have gone through my mind....

Has

Optimistic

Positive

Energy

or is it...

Had

Oppressive

Pondering

Event

or.....

How

Opportunity

Presents

Everyday

So, the verdict for Dave's appointment today was he is in kidney failure. He has about 17% function. Although biopsy and dialysis would be the next choice, they are not good choices for Dave at this time with stage 4 lung cancer. Finally someone has told us a timeline. Although no one really knows, he felt Dave's kidneys would completely fail in 4 to 6 months. We can continue to support him with fluids for now. He wouldn't say anything about stopping or continuing the chemo pill, that's up to the oncologist. Now is the hardest decision we've had to make. Does Dave go ahead with radiation to the last brain tumor Wednesday....or does he stop. He says he doesn't want to do it...then he says what if it would help him even for just 4 to 6 months? Or he thinks I'll be disappointed. The truth is, we thought he would only have 4 to 6 months in July of 2009 and we're still here. He is weaker for the effort, but still doing things and being with family, friends and our dogs (and dog-cat). I can't really push him either way. It makes me cry and feel very sad.

So to me HOPE is all of the above. It comes from the journey and through the journey. It helps you wake up and go for one more day. I just hope I have the courage to support my love with it.

peace, love, groove

Chi-town will never be the same

Yeah Baby! What a weekend. We left here about 11 am Saturday. Phil and Mark made it through "orientation" and we got on the road. After checking into the hotel we started at Ditka's with tenderloin sliders and bloody mary's about 1 am. We walked and walked and walked. Highlights included bra fittings at Intimacy (great fun), Macy's sale (didn't get anything), bloody mary's at the Westin (not as good as Ditka's), then martini's and appetisers at Feast. Then we walked to the Trump Tower and had martini's on the roof top bar.....what an amazing view. It was a little windy but so fun! We stopped by The Underground Wonderbar and started talking to two PTs from Brussels who had just finished a clinical with one of the outpatient PT groups in St Joe MI. How did that happen? Sandwiches and one more drink across the street from our hotel and we were in bed just before 1 am. The "old" ladies still have it in them! Today we had a great breakfast at The Original Pancake House and I thought I saw Roger Burn's brother, Gary. It was him! He was there with his wife, Chris Burns and Gail Burns. We had a short visit. It was pretty crazy to have that happen! We ran by a couple more stores and then headed home.

Dave was sitting on the deck with Phil when we got home. They all did just fine. I only called twice. Missed my Dave, but it was great to have so much fun with my sisters. What a great family..... Love you all!

peace, love, groove

Watching Tennis

Who'd thunk Dave would kinda like watching Tennis. He's been watching with me the last few days. Today the home care nurse got here at 7:30 AM to start Dave's IV fluids..the pump wouldn't work. We ran it the old fashion way while Dave snoozed. Catherine T came over so I could get an oil change and up to GR. Then Lindsey came by. Dave talked him into a ride to Best Buy...well 2 trips. First they couldn't find a wheel chair and came home for our borrowed one, then they realized Dave didn't have his wallet. Guess that means no real trips to Best Buy. Sue and Lindsey brought over Chinese. Dave didn't really get into it, thought it sounded good but it didn't. After a nap he ate some ice cream instead and it's time for bed. Promise I'll get some pictures on soon. Have to get some memory cleared on this thing.

peace, love, groove.

Great evening

Dave got in a 3 hour nap this afternoon and Scott came by for a visit before he heads back to CA. So wonderful to see friends from out of our state. Amazing that all of our friends are so wonderful. Tim and Joni brought over dinner...wow. We ate on the deck and then sat by the fire. A great evening. Dave was stronger than last night when he went to bed.

I have to say once again...there are angels around us. True angels who support us in many ways. From thoughtful support to amazing unthinkable selflessness..... I thank you from the bottom of my heart. Know that we never expect any of this kindness and love, but we are thankful.

love you all,

peace, love, groove

Catching up- Friday night

It's Monday already? So where do I begin? Let's start with finishing up stuff from Friday.

Went to the oncologist. He feels it's not the Traceva that is causing the kidney problems. So, Dave's back on Traceva. I asked our friend Julie to come along to the appointment since the office had said "no" to homecare drawing lab. We discussed IV fluids and lab work via homecare and got the okay. I also had to point out my frustration with communication. Long story short, the MD got a little defensive but said they would try better. We got fluids at home....I'm happy and will no longer try to be quiet. Dave did stay for IV fluids there since there was no way to get at home that quickly. I had him stay in the car while I got to a couple errands.....new socks for Dave that I can help with better and a couple other things that will fit him. He's down to 185 lbs. He was still quite confused, so I ran in and out very quickly. By the time we got home, Dave was beat. I let him nap and we had a late dinner...well I did.

Saturday night we had a fire out front. The neighbors came over for awhile and I cooked a steak on the fire. Dave had some... Saturday night was kinda hard for Dave. He forgot to use the urinal and walked to the bathroom. I went to find him and he needed help to walk back, we only got to the bed in the living room and he was exhausted. I suggested he sleep there. I went back to the bedroom... I don't think that will work. About 6 am I heard some pounding and Dave was hitting the wall to get my attention. I did hear it....but how long was he pounding? He needed help getting up. The up and down during the night is keeping us both a little tired.

Sunday Dave got up and had his coffee and morning medications. He rested in the living room and had some Cream of Wheat. About 5 pm Tim and Joni came over. It was sweatshirt weather for sure, but we sat out on the porch. Joni and I went to get pizza for us before we went to the beach. The big sunset event....well, Dave didn't really want to go. We got there and could see a little sliver of red sky. I have to say even though we didn't see the sunset and clouds and sky were pretty amazing. We all sat in a semi-circle- I have a great picture. Dave could hardly walk back to the car after about an hour. When we got home Tim got him in the wheel chair. He sat in the living room while Tim, Joni and I ran after Nancy-boy. Not only did Nan get out, he ran under the cars. Finally got him in ...it was really only about 15 minutes and then helped Dave on to the living room bed. Next Tim and Joni helped me put blocks under the bed frame to raise it. That was pretty hard work.....who wants a king sized bed? I guess I'll keep it for now. I let Dave sleep until 11:30, got him up for his evening medications and he walked to the bed room.

Today Dave seems a little less confused. Home care came to start his IV fluids. It still runs for 2 hours and then I flushed it. Dave's napping before Scott comes by and then Tim and Joni are bringing dinner. Hope to have a fire for awhile...perfect night for that. Dave gets a brain MRI on Thursday. I'm trying to keep up with work and Dave. Some days are harder than others, I think I'll need to take a leave soon....just don't know when.

Pictures coming....honest.

peace, love, groove

Can you say "windy"

Wow- the wind is ferrous in Southwestern Michigan. And it's only in the 60's. That didn't keep Dave from sitting out on the deck and visiting with Chuck and Scott. He certainly got less confused during their visit and had some great laughs...thanks men! Every one's fingers were cold even though I brought out a heater. Dave came in and had some yogurt and part of a roast beef sandwich. Starting out to be a better day. He's now napping. Plans for a fire tonight....come on by!

Lot's to write about the Oncologist appointment yesterday...all good...for us. And I have some pictures to post, but it will be a little later...I need a nap. :)

peace, love, groove

Sliding into the weekend

Last night and first thing this morning Dave was pretty confused. "Soup" meant coffee, etc. He got up in the middle of the night and who knows what he thought he was doing. His sodium has been staying a little low through most of this, so his homecare nurse said "back to Gatorade". I called the NP and told her about his confusion. Oncologist office had told homecare they wanted to get Dave's lab at the office, so I just called and said he's very confused...I need to talk to a nurse and asked if we couldn't get the lab today. They said yes. Catherine T came over a little after I left for Allegan. PTA got in a session today. When I got home Dave was napping in the living room and pretty pooped!

We saw the radiation oncologist this afternoon. Because of Dave's creatinine is rising again they are going to get a Brain MRI without contrast next week. If the 2 brain tumors responded well, we may go ahead with repeating the procedure on the tumor they couldn't get to last time. We'll have to see how the appointment with the oncologist goes tomorrow and how we're going to manage fluids.

Hoping to go watch a sunset this weekend with some family and friends. Updates to come.

peace, love, groove

Going up.....

A better day. Dave sat outside a bit. He didn't want to do PT this morning, but went later in the afternoon to Best Buy with Tim. I think that counts. Tim helped me put up 3 grab bars in the bathroom, and of course the new toilet paper holder, towel bars x2 and a hook. It just had to all be done at once :). Dave tried out the grab bar by the toilet and he was standing up in a second. SOOOOOOO much better. And safer. It feels so good to get that done. And it looks pretty stylin' too. Thanks Tim!

Got Dave to eat some more today, didn't push the fluid as much. Tomorrow he'll see his homecare nurse and PTA. Catherine T is coming over while I go to Allegan. Mid afternoon is an appointment with the Radiation Oncologist. I should be back for that. Will post what we find out.

peace, love, groove

Awake and it's feels like a rollarcoaster

Not the best day. Dave was confused a lot of the day. I went to GR while Joni made him brownies and Mom did some house stuff. OT and PT were here while I was gone. We're looking at putting some grab bars up for Dave. Evidently our toilet is on the low side...who'd a thunk?

Dave did okay with drinking today, but not eating. It seems to be one or the other. Kinda makes sense. All that water and fluids make him full. I need to call the NP in the morning and see what we can do to get IV fluids at home. Time to try to go back to sleep. :)

peace, love, groove