Monday- 3 days to chemo

Dave had a "hankerin'" for broiled fish, soup and mashed potatoes with gravy. Where to find this in St Joe. Went through a few choices and decided to try the Boulevard. The other Maki's, Phil and Loni, joined us and Dave got pan fried fish with mash potatoes and gravy (not on the menu) and a big bowl of soup. Heaven. Still tired but starting to ramp up for Thursday. Time to watch TV in bed.... with 3 dogs.

Sunday- 4 days to chemo

Pictures: X-mas decorating- my mom gave me this ceramic tree made by my grandmother; in honor of my friend Julie's birthday Friday... a reindeer girl.

The count down continues. Dave remains very tired, napping and resting today. He got another Neulasta shot. Three more to go. I cleaned and decorated most of the day. In case it sounded different, I'm very glad we're having the cookie party. I want the holidays to be as close to normal as possible. Not a lot to report, which is probably good.

Saturday - 5 days to chemo and a fire ......

Pictures: Ruthie's tail after the fire.

Dave went in for his daily shot Saturday. He did get lab on Friday but we haven't heard anything. I think he'll also gets lab on Monday and Tuesday. The clinic is keeping a close tab on everything to ensure counts will be high enough for chemo Thursday (if possible). Although he's soooooo tired ... he's driving to get his shots and small trips to the grocery store, cleaning up dishes once a day (or so), made a camp fire Saturday and smoked some pork for dinner. I think he's doing a great job, but I know it's getting harder for him.

So let's get to the fire. Tim, Joni and my mom came over for a fire and din-din. The fire was great with extra wood added often to keep us warm. All of a sudden Tim shouted Ruthie's name and started to pull her toward us. My heart dropped when I heard her name. The smell of burning hair filled the air... she had laid her tail right in the fire. Tim said he heard something "sizzling". The pictures above show there is very little hair left on one side of her tail...thankfully no major injuries. We'll have to see if we can trim it for her. Hopefully hair will grow back; hopefully we can keep her from doing the same thing again.

This weekend has also been focused on getting ready for my annual Christmas Cookie Exchange party. I thought about canceling it this year, with everything that's going on.... but we should have a normal holiday (as normal as possible). So cleaning and decorating is a another project ......

Friday night = gig at friends bday party and 6 days to chemo

Pictures: Dave gettin' down on bass; Dave sits in with Lindsey Mierau; Sue, Mark Lester's "mom" and Lee; "Friends" starting the the night out.

Dave had a pretty good day. Got his Neumega and the clinic told him to drink Gatorade since his BP drop yesterday. So Dave comes home with several bottles of that. We had a wonderful ham dinner. A nice change after a great turkey meal yesterday. I'm getting ready for the annual cookie exchange party next weekend. Dave rested a lot of the day and then we were off to Julie Lester's birthday party. Great fun and lots of friends. Dave walked in looking a little bushed and then started playing.....the rest is history. It fills him up for sure. I'll post a little video tomorrow if it turned out.

We continue the countdown to cycle #6. It feels good to be so close, just need a little push and we're there. :)

Thanksgiving - 7 days to chemo

Pictures: Erik and Katie; Jean Smith and my mom- ready to fight the bird; Dave making gravy and Phil getting ready to cut the turkey; Katie and Jennie "Is it time to eat?"

Thanksgiving 2009. Dave was in charge of the gravy. I made a couple sweet potato casseroles and, as usual, there was an over abundance of food at the other Maki's. Great dinner and lots of family. Dave was very tired but did just fine until about 45 minutes after dinner. He got dizzy, clammy, sweaty and his BP was 65-70/40s and his HR was 95. Call to clinic but Dave's fighting the whole time... "I don't want to go to ER". MD agreed (this time) and just wants to know if he gets worse or if his heart rate becomes irregular. "Yeah" says Dave. BP 89/58 when we got home and HR 83. 2 glasses of water and I think he'll stay in bed most of the night. Dave will get a mini check tomorrow when he goes in for his Neumega shot.

I'm glad that we won't be in ER tonight. 7 days to chemo. I think rest is a number 1 goal for this week.

Wednesday- 8 days to chemo

Dave got sick this morning. It just came out of nowhere. Luckily it went away just as quick. We went to get Dave's Neumega shot and then he came along with me to Grand Haven and Holland. We had a great lunch at Butch's in Holland. It was nice to have a little company in between appts. After we got home I braved the grocery store and then picked up some pizza for dinner. All and all a pretty great day. The count down begins to cycle number 6. We'll get there this time.

Happy Thanksgiving to all!

Chemo day....moved to next week

We kinda had a suspicion that Dave could get his cycle stalled until next week. That's exactly what we heard when our NP came in the room this morning. Dave's platelet low was actually 5,000, went up to about 65,000 and then started back down ending up at 45,000 on Monday. The plan is to get Neumega daily through next Wednesday with a couple extra labs. If Dave can get up to 75,000 by Wednesday, we're a go next Thursday for cycle 6. They will be dose decreasing 10%, but told us it's still great he's getting all 6 cycles in. The dosages for Taxol and Carboplatin have been max. for the study. I guess many oncologist give a dose 10% lower to avoid some of the severe side effects.

So, breakfast at Joe's and then Dave went to hang out with Tim and Tom at the King's house. I went over this evening and joined them for dinner. Very nice not to have to worry about that. Now, if I could just get Dave to watch the Dancing With the Stars final with me. :)

Something on my mind

Picture: The little things to appreciate- a man and his dog napping.

Last night I woke up at 3 am and couldn't get back to sleep. I tried but kept thinking about something. A couple of great friends gave me a birthday card and the message was... how we think our lives will go and how it isn't always that "cookie cutter ideal". There can be a different path and that will be better than we expect. When I read it, I don't think my thoughts were the most common...... we come in contact with cancer and the cure will come and we'll appreciate life more. I thought about how my life has changed and how I appreciate the now and all my time with Dave so much more than I did before the "C' word. When we were going through the beginning shock I told Dave I was sorry we had to go through this. He said to me, maybe we were more lucky than most.... to know the time we had was finite and to appreciate that as a gift. So now the cancer means our life is better NOW and we are closer and more thankful for time together than before the CANCER diagnosis. It means we shouldn't be afraid of cancer or death.... we should enjoy the time we have. I live and breath that everyday. I hug, touch and kiss Dave thinking how sweet it is and how I am fulfilled forever with his love and being. I am a better person. Thanks Tim and Joni for those thoughts that continue to inspire me. I love you both.

Saturday at the Box Factory

Saturday at the Box Factory with Bryan Lubeck. It was a great show. Tim King on sax, Mark Moore on bass, Ed Skjordal on drums, Dave on keyboard and Bryan on guitar and vocals. Very good performance and fun night. Thanks to all.

A Boost

Platelets and PRBCs sure give a boost. Dave is still tired, but no bleeding and getting some things done. Went to hear Dave play with Bryan Lubeck tonight. Dave did great and looked good. Labs again tomorrow and then prep for Chemo #6. We remain positive. Looking forward to Thanksgiving. Will post pictures tomorrow.

Dave plays with Pink Freud

Pictures: Dave playing large keyboard solo: Tony Ornt (band lead singer and keyboard); Bass player Kenny.

Well, Dave was up to going to see his old friends Pink Freud, a Chicago band that plays... you guessed it Pink Floyd, at Czars. They had Dave come up and play part of a song with them. Great guys and fantastic musicians. Dave had fun, but we were home by 12pm. Big day tomorrow. Lab to check platelets and hgb and then concert with Byran Lubeck at the Box Factory. Starts at 8 pm, see you there.

Chemo can be hard

Pictures: Dave giving me a smile; less than 1 UPRBCs to go!

Dave woke me up at 7:15 am thinking we might need to go to the ER. He'd been up for an hour coughing up blood or getting blood when he blew his nose. We immediately called the clinic and had orders to go right to the infusion clinic to get platelets and blood. They drew blood first and his platelets were very low, 7,000 (normal is) ,and his hgb was 8. So Dave spent the whole day in the infusion clinic..... 2 units of platelets (Dave had a wild description of that) and 2 units PRBCs (his 7th and 8th). He was bored, but tolerated it well. I had to leave for a few hours. We got home about 5:20 pm. I hope there's no blood reaction tonight- I have no desire to go to ER on another Friday. Dave is now only having a few streaks of blood when blowing his nose. The NP said there's a chance they may have to decrease his chemo dose on Thursday. We'll have to see. They are checking his CBC Saturday and Sunday, monitoring closely.

And then there's CW. Still wants to go to Czar's and see friends that are playing tonight. I'm going with (hope only for an hour). I'll have pictures tomorrow. The fight continues.

Petech....what?

I got back from Traverse City today. Dave had lab work and practice with Bryan Lubeck for Saturday performance yesterday. Today the clinic called and his platelets are VERY low. He has petechiae all over his legs, coughing up a little blood and got a scratch that bled for awhile. So, Dave tells me.... no one can stab him, he can't get in an accident and can't fall and hit his head. Good to know. He'll most likely get platelets tomorrow. He is pushing through.

Dave posted the full letter to the editor on facebook the other day. The newspaper did edit the one they printed. I thought I'd put the full version here too. Mentions lots of wonderful friends including the groups that played at the benefit.

Editor,

On Saturday, October 24th a benefit was held for me at Czar's 505 in St. joe. I'd like to take this opportunity to express what this meant to me and to thank some of the many people involved.

There was a bit of trepidation/nervousness as the night neared. Then I felt excitement, mostly because I knew I was going to be able to play music that night for music lovers. And after all I was going to Czar's, my second home for about 9 years. Tom Jennings had graciously lent out his club for the evening. The food was ready, the music equipment set up on stage, and the first group of musicians poised to play. At 7 pm people started flowing down the stairs. Ed Bagatini's group kicked it off with an appreciative audience. The jazz sounded great as we greeted friends and family to the party.

I talked to most but not all of the folks there. Friends from grade school, people I played in my very first bands with. My boss from my first job was there. My high school band director Bob Brown and choir director Dennis Bowen, who were bigger mentors to me than they will ever know. Close friends that traveled from California and Minnesota. Old friends, new friends, coworkers, and a slew of folks I have played with, recorded, or ran sound for over the years. We traded stories, reminisced, and caught up. The hugs were plentiful and the smiles broad. Feeling the vibes in this surreal forrest of people that supported me was overwhelming for sure. The thing that kept me on track and held it all together was the music.

The night was all about music and the music was great. Pretty much non stop from 7 pm till 2:45 am! Thanks to Ed Bagatini Quartet, Psycho Uke, Bob's Garage, Jenna and Nino Mammina, Danny Dine, Maxon Struwin band, Mister Edd, Dave Carlock and his Dominant Saxual Force, and Johnny Edwards for their immense talents and donations of melodies, harmonies, and rhythms. I think everyone realized how lucky we were to have that much talent in one room.

My thanks also go out to the organizers, Tom Jennings, Phil Maki, Lindsey and Sue Mierau, Tim and Joni King, Liz and Dan Shiman, Mark and Julie Lester, Jenna Mammina, Chuck and Cookie Hartzell, Ed Skjordal, Mark Moore, Gary Miller, Catherine and Mark Sanford, Jim Sink, Dave Carlock and WIRX for the live interviews, Pat Moody and Mailmax, and Jeremy Bonfiglio and the Herald Palladium. Also an immense shout of thanks to all my friends that showed up to party that night and all of the generous donations that we received from the community. I hope they all took home the memories of music and friendships that will last forever. I love you all. Thanks for the best night of my life.

Peace, Love, Groove,
Dave Maki

Dave is very tired.

Dave seemed to have a lot of energy on Sunday. Yesterday a little less and today he's very tired. Maybe a little flushed and feels cold. Temp is 99 degrees but he could be starting a fever. BP was high enough today for his BP med, now it's 104/60. It's still a push through to the 6th cycle next week. It's getting tougher... keep positive thoughts coming Dave's way. I believe CW will make it.

Such great friends and family

Pictures: Dave's nicely piled fire wood; Dinner at the Maki's- Dave and I sat on outdoor chairs (haha); Mom, Ev, Bill, Kay, Emma, and Claire enjoying Dave's home cooked meal; Emma and Claire.

So- another yard day. The Stickney-Dines and my mom came over to help rake up leaves. Claire twisted her ankle on the way and we set up a VIP area for her by the back door (included her own fire). Got a lot of clean up done before a great dinner of Chicken and noodles and then roasted marshmallows on the fire. A great day for Dave too. Our neighbors, Bela and Jean, brought Dave a handmade shawl to keep him warm during chemo. It was so touching. My heart is full and we feel so lucky to have such wonderful friends and family.

A Shot, A Gig and Sleep

Saturday was a much better day for Dave. He got his shot (Neumega) in the morning and he'll get this every other day through this Wednesday. We went to see "2012" with Tim and Joni and Suzanne and Tom- exciting movie for sure. Tried to get a nap in before we were off to Elkhart for a gig with Maxon Struwin. Mimi and Jeff live in Elkhart and they came by to listen. Alison and Mark, Dave's siblings, live in South Bend and they came to hear too! The band was pretty hot. Dave was feeling the numbness in his fingertips... couldn't tell from his playing. It was a long day (home at 3:30 am), but Dave said he felt pretty good. No complaints of nausea, although food is starting to "all taste the same". It's the count down to cycle # 6 Tuesday November 24th. They've moved this one up 2 days because of Thanksgiving.

Today will probably be another yard day. The big maple in the back yard is loosing leaves (it's always the last tree in our yard, typically late November), but there's still about 1/3 left. Thinking they'll be a fire. Dave got a truck load of wood last week. It was 64 degrees here yesterday, it's 47 now with an expected high of 50. We'll need warmer clothes. :)

Friday the 13th in the ER

While the camp fire was quite wonderful, Dave started having stomach cramps and feeling pretty bad. He first complained of itching arms and hands. While in the bathroom, I noticed his face, neck and hands were bright red and his right hand was swollen. Emergency consult with another nurse friend led to talking to the on call MD. Well, it could be a delayed allergic reaction to the blood transfusion ........ on to the ER. Got there about 8 pm- left at 10:30 pm. Benedryl took the "rash" away and 500 cc of IV fluid........ Dave's a lot better. Of course "it's very unusual for a reaction to blood to happen this late". We did what we were told; better at 8 pm than 2 am. Small dinner and off to bed. After all tomorrow's another day.

Thanks and more thanks

For those of you that didn't get the local paper today. Here's a little thanks from Dave. The link is Herald Palladium.

A night of great music and generosity

Editor,

A benefit was held for me at Czar's 505 in St. Joe on Oct. 24. I'd like to take this opportunity to express what this means to me and to thank the many people involved.

There was a bit of trepidation/nervousness as the night neared. Then I felt excitement, mostly because I knew I was going to be able to play music that night for music lovers. And, after all, I was going to Czar's, my second home for about nine years, as owner Tom Jennings had graciously lent out his club for the evening.

I talked to most but not all of the folks there: friends from grade school, people I played in my very first bands with, close friends who traveled from California and Minnesota, and many others. We traded stories, reminisced and caught up. The night was all about music and the music was great; pretty much nonstop from 7 p.m. until 2:45 a.m.!

My thanks also go out to the organizers, and also, an immense shout of thanks for all of the generous donations we received from the community. I hope everyone who attended took home the memories of music and friendships that will last forever. I love you all. Thanks for the best night of my life.

Dave Maki

Benton Harbor

Gotta love blood and music

Pictures: "Friends" playing at LMC Bertrand Crossing for the Indian Artist's show (Dave, Earl, and Bill); Dave and Earl; Dave getting down with a bass solo; Dave and his breakfast at the infusion clinic.

Last night Dave played in Niles. There was great art through an Indiana artist group and they had an awards presentation. Our favorite part was the JAZZ. Dave rested a little after his first unit of blood and we were there at 6:30, played 7 to 9 pm. It was fun.

This morning Dave went in for his second unit of blood. All went well including his breakfast. It was up to 60 degrees here today. So guess what..... camp fire tonight! All and all, a little blood and a little music goes a long way.

Another Blood Transfusion

Well, got a call from Dave early afternoon and he has to get a blood transfusion again. 1 unit this afternoon and 1 in the morning. He's playing in Niles tonight, so can't stay to get both. Hgb was 8.8 (I think). I'll write more tonight or tomorrow. He's hanging in there. Busy week. Plays in Elkhart on Saturday too.

"What a difference a day makes"

Really, Dave's BP started going up last night. He's still tired, but no more vomiting, dizziness or a lot of nausea. BP this morning was high enough to take BP pill. Blood culture and Chest x-ray were negative for infection. They did find his sodium is low... now he gets to take salt pills. Due to a craving (Dave's), we had fried chicken for dinner tonight. Feel a lot better about leaving town tomorrow. Call and bug Dave tomorrow night if you want (ha ha). Dave's playing Thursday night and Saturday night which leads to the week before chemo. Thanksgiving is almost here, do you believe it?

What a Monday Morning

Started the day hearing Dave didn't have any more emesis during the night, then he got up and told me he had been nauseated every time he got up during the night. So- BP time and it was 104/64 (or something close to that) and his heart rate was 95 (high). Dave has been symptomatic of low BP when it's that low. HERE comes the call to the oncology clinic and Dave had to go in for a blood cultures and a chest x-ray. Since he is keeping fluids down, they are looking for an infection. He goes in tomorrow for another platelet shot and they will see how he is then. It's hard for me to imagine, but Dave is even more tired. He just wants to sleep (understandably and fine as long as he drinks water and eats).... and sleep. The platelet shots (Neumega) will add to the fatigue so I expect the road to the last full chemo may be challenging. Dave is hanging in there and we will make it.

A tepid Sunday evening

Dave made a great Mexican pork stew this afternoon after going to get his every other day shot, stew has a fancy name I can't remember. The mom's liked it a lot. My mom and I picked up about 6 bags of leaves then our neighbor Kevin took them to the street. Our beautiful maple in the back yard still has leaves, so the final clean up is still too come. We had another great fire with the 2 moms and later our neighbors came by. It's been in the upper 60s today and still feels like 58 - 60 with lots of stars visible tonight.

Dave's been VERY tired today. Just had some dry heaves. Taking all the anti-emetics in his arsenal. His BP was 102/64 this evening, rather low for him and he's drinking lots of water. Glad he doesn't have a lot of things coming up this week. I'm planning to stay in GR Wednesday night, that's if I think it's okay for me to be gone. One day at a time seems to be the best MO for now.

It's Sunday morning

So, what is it with the "wake up at 7:30 am" no mater what time you go to bed deal? At least we both enjoyed great music last night. Dave said Steeley Dan was amazing. He got home around 1:30 am. Thanks Mark for driving. Jenna and Art Gomperz were great too. I got home around 11:30.

Dave threw up again last night. We may be getting to the really hard part. But only 1 big cycle left. Dave keeps his fighting spirit.... "Lee, I'm strong like bull" We'll enjoy outside, clean up a few leaves and harvest our potatoes today. Both of our moms are coming over. Hope to mostly enjoy the day. Now, I have to get cleaning the house. :)

Friday night at Camp David

Pictures: Dave in his new hat; Now that's gonna be a dinner.

What a beautiful evening, there's a heat wave in the Midwest! We had a fire and cooked steak and baked potatoes- great dinner. Of course it's dark around 6 pm. Dave got a great new hat (handmade) from our neighbors, Bela and Jean. It's very soft for his head and warm. He's getting a nice little collection of hats.

Dave is doing pretty good post-chemo. He had a lot of errands Friday which included a couple shots at the oncology clinic and the almost weekly stop to the pharmacy. He did have some issues with heart burn later in the evening and told me this morning he had to throw up. One of the first that wasn't just dry heaves. This morning he's better (but still in bed). He is suppose to continue pushing fluids today per the new study directions. If the vomiting were to continue and he couldn't keep fluids down- call to the clinic. I think we're over the hump.

Tonight Dave's going to see Steeley Dan with his brother Mark in Merriville. One of our favs. It looks like they're playing the Aja album tonight. I'm going with the other Maki's and Kings to hear Jenna Mammina at the Acorn in Three Oaks.

# 5 chemo cycle and some more success

Pictures: Dave lighting celebratory "roman candle"; the fireworks- really they're there- we just can't see them

A wonderful day. At Dave's oncology appt there were several discussions. His hgb was 10.8 and platelets were 78,000. Our oncologist does not give chemo if the platelets are 75,000 or less, so there was discussion before he went forward. Dave did get chemo and tolerated it well (so far).

1- CT scan results.

Let me start by saying no growth is success. And we had a 73% decrease the first CT scan and were told it is normal not to have the same % decrease the next time. Okay, not trying to be a downer, just setting the situation up for all. There was another 5% decrease compared to the original films, for a total 77% decrease in tumor size. YEAH! There is a small section of scar tissue where the original tumor was Lt lung (one reason for roman candle).

2- The study

The study continues and our MD feels that the success we have seen is due to the study drug (CP-751,871) . They have added some precautions and extra testing. Extra fluid 2 days before and 2 days after chemo, an EKG before each chemo, and some required labs (including glucose monitoring) which our oncologist already was monitoring. Bottom line, we can continue and Dave happens to have had minimal amounts to none of these issues.

3- The plan

The oncologist wants and feels Dave can get through the next chemo #6 the day before Thanksgiving. Dave will have more doses of the medication to increase his platelets and I'm crossing my fingers. After that, we'll get another PET scan to see what's going on. It's possible that lesions remaining are "dead". Dave will get another 6 doses of the study drug which hopefully won't be as difficult when stopping the 2 other drugs. Dave has had some decrease hearing and numbness in his fingers and toes, but not enough to stop. It's awesome if he can get the total 6 doses of all 3 medications in.

We remain positive and strong in our fight. CW is the best fighter in the world! He told the MD- I'm ready, let's go for it. I'm in awe of his commitment and will be by his side through it all. We will win.

Hoping for CP-751,871 tomorrow

The week is flying by. Today Dave gets lab in prep for tomorrow and chemo cycle #5. We'll get results from the CT scan last week and hopefully news about the study drug. On one hand it feels like Dave had cycle #1 yesterday, on the other it was ages ago. Either way we are wiser and better at enjoying the little things than we were in July. Will post results of oncology clinic visit tomorrow evening.

Fine start to the week

Dave saw the hand surgeon this afternoon, he thought as long as it's getting better with antibiotics (and it is) he could hold off on the procedure this time. YEAH! Dave got done in time to stand in line for his H1N1 vaccine. There's one clinic left in Berrien County, this Friday in Niles. Only high risk people can get right now and the information is on the webpage. I'm so glad he got the vaccine, timing was important with his chemo schedule (couple days before chemo). Now we wait for Thursday.

Leaves and Campfire

Pictures: Dave, Emma and Claire at the fire; Kevin, Bill and John after chili; John, Claire, Kay and Emma with lots of leaves; Emma and Claire getting a good start.

What a great day. It ended up being sunny most of the day and in the 50's. Friends came over to pick up leaves- the Stickney-Dines, John Payne, Sue and Lucas Mierau . Dave made some great chili and we had a campfire. Dave's feeling pretty good today. His finger is not sore today, but he still needs to see the hand surgeon. Trying to get him to do a soak in the morning- can't get him away from the fire tonight.