Half Way to New York, New York (sorry it's so long)

So it's time to revisit the almost trip to New York 5/10/10 to see Chick Corea at the Blue Note.  Dave's platelets were very low (so he could bleed easily) and so was his hemoglobin.  I felt I had told everyone  at the oncologist office that we had this trip planned.  Dave went in for some platelets in the morning.  He had had some nosebleeds and coughed up some blood a couple times.  Our nephew, Erik, met up with us and we left for Ohio by 1 pm.  Dave was pretty weak but determined to go.  I realized about an hour on the road that I had forgotten the wheel chair I was going to bring along.  I decided we'd find something there.  We made it to the hotel in Ohio early evening and Dave wanted to rest.  While he napped, Erik and I went to eat (free food at the Residence Inn so we'd be close if Dave needed us).  Around 8:30 we went back to our room ( a 2 bedroom suite) and I checked on Dave.  He felt hot and had a temperture over 101 degrees.  He hadn't eaten or had much to drink and he was sooooo tired.  I called the oncologist on call in St Joe.  He told me he didn't know we were going out of town, that he usually would give patients an oral antibiotic to take with them in case of a temperature like this and since we didn't have that we would have to go to the emergency room.  I found the nearest hospital on the internet.

I let Erik know we needed to go to the emergency room, he decided to rest while we were gone, and we got Dave in the car.  We found the hospital despite some remodeling and there was a little walk from where I could park, so I went and got a wheel chair for Dave and pushed him in.  I told everyone we were on our way to New York, needed some antibiotics so we could get on the road in the morning.  I was going to do everything I could to get him there.  Dave had a CAT-scan and they said not being able to compare to previous films meant they would call Lakeland in the morning or we could head back home tonight.  The doctor was very understanding of our plight, but said we'd just end up in the hospital in New York if we didn't stay there or he'd release Dave after a dose of antibiotics with a promise we'd go right to the hospital back home.  We sat there waiting for the IV Vancomycin to finish and then headed back to the hotel.  I think we got to the ER before 10 pm and left around 2 am.  I could tell Dave was really sick, he was also disappointed but resigned to our fate.  We decided not to wake up Erik when we got back to the hotel and tried to get some sleep before the ride home.  That was not easy for me.  I feared I had gotten us in a situation that would be diffucult to get out of -  the trip home would be a hard one.  Dave had no appetite, he had not had much to eat that day of travel and was not drinking much despite my constant reminders (okay maybe it was more bothersome than that).

Dave waited in the car with Erik while I made an emergency stop at a Best Buy...we forgot some important stuff.

Erik

Dave on the road to New York

I think we got up about 8 or 9 am and I broke the news to Erik that we had to head home.  I asked him to drive since I had much less than 5 hours sleep.  Before we took off, I called the oncologist office and left a message that Dave had been in the emergency room in Ohio, they were going to call with an update and we were told to go right to the hospital in St Joe when we got home.  I was told a nurse would call me back.  I also remembered to cancel our hotel reservations in New Jersey.  It was less than 24 hours, but when I said my husband was being admitted to the hospital, they cancelled it without charges.  One good thing happened.  We snacked and ate a little on the road, but made very few stops.  I think Dave got out to the bathroom once.  He drank some of a shake and I checked his temperature all the way home (he was very bothered by my hovering over every move he made).  I got to nap for a couple hours and I think Dave and Erik talked some along the way.  I had left another message with the receptionist at the oncologist office around noon without hearing back.  When we got around South Bend it must have been getting closer to the oncologist office closing time and his temp was over 102 degrees again.  I finally got to talk with a nurse (begged the receptionist) who suggested we should go to the emergency room in South Bend.  I told her we had driven this far and we were coming home and driving right to the emergency room (as directed by the hospital in Ohio).  Being the good, or crazy, pediatric nurse I was, we drove the rest of the way with the sunroof and windows open trying to help cool Dave down.  I didn't want him to get hotter, plus sometimes when temperatures rise over 102 it can cause seizures and that was the last thing we needed.  Poor Erik..... he drove with his hoody over his head and some heat blowing just on him from South Bend to the hospital.  I remember trying to figure out how we'd get Erik to his car when he was ready to leave.  I think I called the Mierau's on the road close to St Joe.  Lindsey got to the emergency room right about when we got to an exam room and Sue followed.  Erik stayed with us for a while and then Lindsey took him to his car at our house in my car (his travel things were still in there) and brought my car back to the hospital.  Dave's temperature was still 102 when they checked it.  It took a few hours to get lab work and a room.  I always wondered why I didn't ask the oncologist office to direct admit him or why they didn't offer.

I have to confess.... I really wasn't sure we should go,  I thought Dave was too weak.  I also have to admit I'm glad we tried even though we failed ( he wound't have had it anyother way).  It was the begining of the end; time became even more precious.

Dreams....

So if I had counted them, there were maybe 4 or 5 times I have had dreams with Dave in them.  Each time he was so real and right there by me.  One of those times was last night and I've already forgotten most of the content.  All I know is how real is was and how it felt like he was with me....it's kinda strange  how rare these dreams are really.  I wonder if he has anything to do with them.... interesting to think about but I'll ever know for sure.  I think believing is okay for now.


peace, love, groove

Another Spring...Many Lessons

2010- We started with the new oncologist and Dave prepared for chemo...again. I suggested he have a professional shave and he loved it.  Spoiling Dave was just the best.  We went to the Relay for Life Auction with the Other Maki's and, most importantly, prepared for the New York trip that started 4/10/10.

2011- I got the driveway done and watched many birds start to live in the front yard.  I found myself looking forward to the future while reliving the past.

So this year, we are preparing for Relay For Life.  Our team "Vud's Buds" will honor Dave.  I told the story at our first team meeting of Dave and I going to see the Nephrologist to be told he was in kidney failure.  The MD did not recommend dialysis and told Dave he had about 6 months to live (I believe this appointment was in the fall).  Dave said back to him..."so you're telling me there is nothing you can do for me, but what I've gone though may help someone else?"  How does someone face death which such humanity?  Our team's motto is  "to help someone else".  Below are pictures from our second team meeting.  We total 23.  With the help of others....We can do it!


peace, love, groove

Vud's Buds will be walking at Relay For Life June 23 and 24 at the Berrien County fair grounds in Berrien Springs.  Here are two links:

American Cancer Society Team page

Facebook page

Stuff

2010-   We made our plans for a trip to NY, NY in May to see Chick Corea at The Blue Note.  Our friends continued to help make the new fence in the back back yard.  Dave was still weak from brain radiation, he had some hair, but we shaved his head due to it starting to fall out again.  I eventually bought a shaver to do myself and include his facial hair (Don Johnson look).  Also started with new oncologist and planned chemo since the brain radiation treatments were done.  Dave was eating pretty good and we went to Sagatuck for one of the best fried perch dinners with my mom and Julie Lester. Joni took Dave to chemo and stayed with him, I was working in Grand Rapids that day.

2011-  PLG girls started a Team Trivia team.  The electric company removed all the "cover" brush at the back of my yard.  It hid so much and made the back back yard private.  I hated when it was gone...it still is for the most part.  I also saw lots of birds "doing it" last year in the front yard.  Spring was and is in the air.

Tonight is the first planning committee for "Buds Vuds", our new Relay for Life team.  The name is Loni's idea.  Dave's family called him Vud from Da-Vud.  His nieces and nephews even called him Uncle Vud some times.  It seems like the right thing to do.  I posted some facts and an opinion on facebook last week about lung cancer:

{"Lung cancer is the leading cause of cancer deaths in the United States, among both men and women. Lung cancer claims more lives each year than do colon, prostate, ovarian and breast cancers combined "(Mayo 2012). 

"It is great to see that medical researchers have made another breakthrough in our understanding of breast cancer. In the largest ever study of breast-cancer tissue, a team at the University of British Columbia have reclassified the disease into 10 new categories, based on the genetic make-up of different kinds of tumours. As the justifiably excitable newspaper headlines put it, this could help to "revolutionise" the treatment of breast cancer, allowing doctors to predict how a tumour might respond to certain drugs and therapies.
Yet at the same time as we welcome the ongoing medical war against breast cancer, it is worth asking why other cancers have been left largely unstudied, where breakthroughs are notable by their absence. It is hard to avoid the conclusion that a cancer hierarchy has been created, where breast cancer is seen as something we can all talk about and wear ribbons for and publicly lament over, whereas other cancers – in particular lung cancer – are viewed as dirty, shameful diseases undeserving of public sympathy or research funding. The end result is that while people with breast cancer are experiencing improvements in their life expectancies, people with less fashionable diseases like lung cancer are not" (The Telegraph- UK, 2012).
Let's fight Lung Cancer...give $10 or some of your time and make a difference. I do not mean this to sound like an anti-breast cancer tyrant...just care about many who have or have died from lung cancer that shouldn't have. We can fight lung cancer and WIN! Help me represent Dave at Relay for Life and get a voice. }


Everyone CAN help by increasing the number of voices the American Cancer Society has behind them.  It's as simple as joining ACS CAN, American Cancer Society Cancer Action Network,  for as little as  $10.  Or, you can let Congress know you support cancer research.  


I realize we all have very busy lives and there are lots of great causes to support.  Dave said to the nephrologist who had just recommended he not have dialysis..."so you can't help me, but what has happened to me may help someone else?"  I want to see that happen.


peace, love, groove

Reviewing Posts and Spring Chick

Reading back over April posts from 2010 and 2011 this morning I found a few that didn't get posted.  I will try to post them when discussing the past years events (as I've been doing this year).

2010- Dave was finishing up his brain radiation treatments.  He had been on high doses of steroids and they started decreasing the dose.  I wasn't able to take him to many of the treatments due to work, Julie and Joni took him most of the time.  They have the radiation patients see the MD once a week or so, I never could make many of those either.  It was so comforting to know that our friends would be there with Dave and help him remember what to tell me.  About this time we were also preparing for a trip to Chicago to see Chick Corea and Gary Burton.  It was so amazing...this is when Dave, Tim and I met Chick!  We could only have 3 of us meet him (6 of us went: the Kings, the other Maki's and us) and I remember struggling with the decision that eventually all helped to decide.  I had agonized over telling Dave or waiting, we didn't find out it was a go until about 6:30 pm when I got a call.  I don't remember now if I told him it was a maybe...I think I waited and got to tell him after the call.  I remember jumping up and down and trying not to scream!

When we started the blog I made it so Joni and Dave could write posts too.  I guess I thought if I was working and out of town it may be easier to have one of them write about his day.  That never really happened except one post.  I somehow convinced Dave to write about meeting Chick.  He said it best, here are his words:

The Chick Meeting....according to Dave

WOW--WOWIE-ZOWIE!!!!!!!!!! What a great weekend in Chicago, celebrating life and music. Lee and I were accompanied by our great friends Tim and Joni King and my brother Phil and his wife Loni. We had a great time gallivanting around, eating, shopping, snacking, eating, and also got some time to relax. Of course the highlight was the concert Saturday night, a duet with Chick Corea and Gary Burton at an exquisite small theatre with 3rd row seats right by Chick. The show was mixed by Chick's life long friend, and my new friend, Bernie Kirsch. The best part for me was a personal meeting with Chick that my lovely wife, coolest person in the world, secretly arranged behind my back. About 10 minutes of personal face to face time that he graciously agreed to. I had thought and thought about what I would say to him through the years. I told him how he had inspired me and thanked him. I presented him some of his favorite gum, he thought it was a "sweet gift". Towards the end of our time I told him I had never really seen him in an intimate setting and would like to some time. He immediately invited us to the Blue Note in New York City and described it as the kind of venue I was thinking of, or something like that. He recommended the second week of May when Eddie Gomez and other guests would be joining him. I asked if I could say hi if we got there, he said "of course" ( you can't believe how humble I feel around him). Upon leaving, Bernie confirmed the second week at the Blue Note would be the best.

All and all this was an amazing weekend, it definitely represented a full circle in my life.

Reading this brings back a few more memories.  We knew Chicks favorite gum from the Return to Forever concerts we attended the summer of 2009 (Chick gave Dave his pack with 4 pieces left).  Dave looked on line to find where he could buy some gum when we got to Chicago.  We found the store and he bought a few packs.  Then when we told Dave about getting to meet Chick, he brought them along and had Chick choose between four flavors- one he had never tried and that's the one he picked.  Chick also signed one of the packs for Dave.  I'll scan that later and post.


peace, love, groove

Friday....really....already (September 2009)

(looks like this wasn't posted? not sure about that) Post from 2010


Wow...the week just flew by. I'm behind...again. So Dave has had his ups and downs this week. He's been very funny this afternoon. His jokes don't always make sense, but he laughs and almost cries. I love that. The nephologist called me yesterday and we will see him Monday. He said Dave's kidneys aren't doing much better and ordered more lab and a urine sample. Homecare came over to get those (how much easier is that- WAY EASIER) and start Dave's IV fluids while I was in Holland today. Tim and my mom were here with Dave. My mom always seems to find a project for Tim. Thanks for tolerating that Tim. Tomorrow I'm going to Chi-town with Loni and Al (2 best sister-in-laws in the world). We're going to eat, drink and be merry. Phil and Mark will stay with Dave. I have 3 local RN friends "on-call". Dave is looking forwarding to spending time with his bros. We are so lucky. I'm so thankful we got the opportunity to know that.

Now, here's my bitch of the week, well maybe the year. KCI sucks! They don't have to follow the Family Leave Act because there are less than 50 employees in Michigan. The poor lady I talked to today. She said "I've heard this so many times, I hear you, I'm just the messenger" So I can get 30 days personal leave in a year. After 14 days they can" drop" my benefits, which would be insurance for Dave. The best thing to do is 2 14 day leaves. I have to call Fred Upton and President Obama. How dare they mess with their employees like that.... I feel a fight comin' on. We, well I, think this is America and a law is a law. But big business continues to think only of the "share holder" and "bottom line". ... (deep breath)....I'm done. Enough said.

I continue to work on getting pictures on the computer. I have some great pictures of Dave and our yard and our cat....they'll be on next week, promise.

peace, love, groove (except not to KCI)