Ride Along with The Pink Hat.

Its 7:44 pm

dedicated to Gary from my job. Thank you.
 
     Another ice cold night here in SE Michigan. While the snow has stopped,the slight warm-up we have had this week has left our roads and driveways a nightmare to travel on. I have never seen so many local roads completely torn by our winter. The main surface roads are bad enough but the side roads are just awful and dangerous as well.
  Now I know some of you may be asking "Why don't they just plug up the potholes"? Its a fair question but a very easy answer,its too cold! The patch won't work because its too cold and instead of being poured in and expanding to plug the hole,the asphalt would instead cool off very rapidly and just become a rock in the pothole. In fact depending on how it froze,it itself could become a hazard by sticking up and causing flat tires if cars ran over its surface. So we have to wait until the weather warms up in order for repairs to work. But the flip side (isn't there always a flip side) is while we wait,the roads are being eroded more and more each day.
  The traffic on the main roads is very heavy because no one really wants to drive on a torn up road that has huge craters or are just caked with thick ice. My sub's roads are okay but the ice is pretty thick. And because of the heavy snows nationwide,rock salt is extremely scarce. No one has any and when it does hit the stores,its gone the second its unloaded.
  But Tidy Cat should send me a years worth of cat litter as I have been sharing the fact that cat litter is most effective to help your car get traction if you don't have salt to lay down. I have told hundreds of folks about this and given directions to the three pet stores that within 2 miles of my job.

  We got our weather forecast,no more snow in the new week but the temp will be screaming south again to single digit lows. The weirdest thing is about this is despite this being a record setting winter for Michigan,that a third of the country at one time had snow on the ground.
   It was because of the nasty weather and even nastier roads that I wasn't able to complete my Suspended Day until today.

   Just a brief recap....in my informal support group on Facebook I decided to take the 20th of Feb and use it as a day of doing a random act of kindness for someone. I created a event in the group and 11 others signed up to join me. Based on the reactions,I think its much harder to do when its planned or when the shop you are going to do your act of kindness in doesn't support it. Some folks were ill during the weekend and I don't know what happened to the rest. I had hoped to include a brief story and a picture of everyone's act.
Instead its just me....but that is okay because people do have lives and life gets in the way. I mean it took me until today to finally get my butt in gear.
   I was going to do it on Sunday but my Cheryl said the Salvation Army was closed on Sundays. I worked on cleaning my house before I went to my job,it was getting a little dirty. But today was free and clear...after running some errands I came home and got ready. The iPad was charged up and I had the Pink Hat in the car. I admit,I was nervous...I was going to a store intending to approach someone,explain why and who I was doing it for and get a picture of the Hat in action. When you do this on impulse,you just DO,you have no time to think or plan. You help that person out and move on. Planning this was so much different. As noted above,I didn't even know if the Salvation Army would even allow me to take a picture. I just said a prayer and headed on out.

   I got to the store,took a deep breath and went in. I had no plan other then try not to come across as a weirdo. The store wasn't very busy and I browsed the books and music area. I tried to think of what to do and say as I stood there. I found a CD that was only 2 bucks(!!) and slowly made my way to the check out lane.
  It was then I saw a young mother with her two small children shopping. She had a young son and a daughter who were shopping in the grab bag area. The grab area is for kids and it contains small paper bags full of loose toys that they can't sell because they are too small. She had a basket of children's clothes and was waiting for her kids. I took a deep breath and walked over and introduced myself. I explained what I was doing and why I was doing it. She got tears in her eyes and said she had just gone through a divorce and money was very tight. Her kids came over with a grab bag and then the mother started unloaded her basket. I told cashier,who was ringing up my CD,to please include the young lady's items.
  I then asked the cashier if she wouldn't mind taking a picture of me with the Pink Hat. As she was starting to take the picture,the kids also got into the picture as the mother. That was unexpected and soon we had our picture. The young lady was Katie,her son was A.J. and her daughter was Izzy. They all said thank you again and then it was done. I walked out and got into the Rodger Young and headed home.



I don't know what March will bring as far as a volunteer event but I know The Pink Hat will be "out and about" more as the weather warms up.

 What else has been going on? Baseball season started today with squads playing their first games against college teams or within themselves. Maybe the sound of a ball hitting a bat will usher in spring a little more quickly.  I don't know that it will but one can hope.
   Still making my way through Dollar Tree Theater. I finished my latest "instant classic" called "Hyper Sonic".
Wow,where do I even begin with this mess? The script,the cheesy effects so bad even the SyFy Channel would be ashamed to show this on a Saturday night? The gaping plot holes? I posted on my FB about how bad a movie has to be if even Adam Baldwin can't save it. Adam is one of my favorite character actors and he elevates any project he is in with his acting. But even he was in the soup with this bomb. The plot has something do with a world wide air race. Antonio Sabato,Jr.,who once seemed to have a once promising career,plays a jet pilot whose mistake cost several lives in a race years before. Five years later he gets a chance to redeem himself despite the obstacles thrown in way by a shady promoter (Baldwin). The plot is leaky and the CGI looks straight from a Atari 2600 console.


This is the beauty of lucking into a bundle of films like this at the Dollar Tree. I can't imagine how pissed someone would get if they actually bought this mess at the full regular price. But with spending only a buck,its a cheesy enough movie to invite some friends over,pop up some popcorn and start cracking jokes.

 I read that actor Alec Baldwin (yes,he and Adam are related) is going to retire back into private life. Alec,who was accused of making anti-gay comments when he was being assaulted by an over aggressive stalkerazzi which cost him his new show on MSNBC (trust me Alec,you aren't losing anything there other then a paycheck). Continuing a theme from guest blogger Dax Shepard about the incredible loss of privacy and the sense of entitlement we as a society feel about knowing anything and everything about a well known person,I can see why Baldwin is feeling so bitter and defensive. In a column he wrote,he says that he has worked with many wonderful folks in Hollywood who are gay and has had no issues with them. I believe that..its a well known there is a heavy gay population working in Hollywood and if Alec had any real homophobic tendencies,do you think he would have had a long term career in that town? I just feel he was provoked and prodded...and if he did use a slur,it would be no different then anyone using a word or a term in the heat of the moment. Not defending it but put anyone in his shoes and see what happens. I doubt very many of us would stay cool and calm.
  Maybe he just needs to take that step out of the spotlight and into the shadows and raise his new family is peace and quiet.




 As I am close to ending this,I am talking with Don Neilson. Don and I have bonded over the fact we are still madly in love with our wives. Don's wife Amy helped me tremendously when Lori's cancer came despite fighting her own advanced breast cancer. Don posted some lovely pictures of Amy on his FB page and has graciously allowed me to share a picture with you. We both talk about about not wanting to forget our girls.
 Now I am doing my small part because I talk about Amy quite a bit...her courage helped us in the first days of our struggle and I mourn her very much. I will never forget Don reaching out to me last 6 May only two weeks before Lori left. He talked with me for three hours....what makes it so meaningful is the fact Amy died on the 6th May one year before. Its gestures like this,like all the kindness that I still receive today that inspires me to do my random acts of kindness because that is who Lori and I were and am. Amy and Don are the same kind of folks.

 


With tears in my eyes,I will end this for now.

If you are on Twitter,follow me @Jinzo_2400


Shout outs

Don - thank you for the picture.
Cheryl - Thank you for your friendship.
Amy Lange - Thank you for your compassion. Sometimes I think we don't that enough to each other.
Lex and Kelly - Sending warm healing thoughts your way.
Dom and Jerome - Old team all the way.
My political Inner Circle- Now this is getting to be fun but beware the Troll button!
Katie,AJ and Izzy - Thank you for helping me on my Pink Hat mission. I hope things get better.
Gary G. - Thank you for the idea!
Denise,Ivy and Joan - just because you are all wonderful.
Debbie Rochon - Motor City Nightmares? I think that is doable.

Medical Update: Hospice and acts of kindness

Its 11:02 pm


    Once again I'm home in a empty house...the last 72 hours have taken me to my limits emotionally wise.

I haven't had a chance to write too much because I pretty much have been giving Lori round the clock care...I would sign in FB,exchange a political barb with Frank Sinatra (aka Monte Lebo,our club manager at the EDGE),post a quick update and then back to Lori.

  The miscue at the U of Michigan has really turned ugly. What Lori has had to endure is almost beyond believing.
  We were passed over to Arbor Hospice about 10 days ago. The original set-up was a aide to come 3 days a week to help change/bath Lori. A nurse was scheduled for a single visit per week. A good plan on paper,right? Nope...its been non-stop every day...be it pain management on a Saturday,medical equipment on a Friday and trouble with her g-tube that brought out a 11:45 pm visit.
  Every day,there has been a crisis of some sort...but the fistula has been the topper. It started out with a constant urination,I had to change Lori's pads over and over. This started getting worse on Monday...it started affecting her sleep and because she was losing hydration,the urine started to really smell. We increased her water intake and continued to administer her gravity I.V.
  Towards the end of Tuesday,Lori suddenly developed diarrhea. It started coming through her fistula and in came in wave after wave. Pretty soon,I was back on the line to hospice asking for help. They sent a aide who helped me change and bath her while I quickly tossed in a load of laundry.
  Wednesday came about and it started out well....very little discharge and I was thinking we were okay.
But Lori started getting very thirsty and I gave her ice water and ice chips. She started getting restless and I had to adjust her bed setting several times. Kassie,our regular aid came out and showed us how to use a Hoyer lift. We put Lori in a medical recliner for the day. The sling was a bit small so she had Arbor order a larger sling.
  Lori was doing well...at first but suddenly all hell broke loose,she had another attack. I started cleaning her as much as I could but the recliner was narrow,it made for a real challenge. Another call and soon Kassie came back over to help me lift her back...Lori started having a incident while in the lift,when Kassie went to help her,the lift started tipping...I grabbed it to steady it and we managed to get Lori back on the bed...Kassie changed her again and left....and 5 minutes later,it happened again. From 3:30 pm to 1:30 am,I was either changing her,wiping her,laundry,redoing her bed padding,getting water with no break to speak of
I slept til 5:30 am and went back down and repeated the cycle. There is nothing special about what I did...she is my wife and there isn't anything I wouldn't do for her...Kassie came again and this time we sat her in a bigger chair so I could at least clean her when needed.
  We decided to buy a bigger recliner so she called up Gardner-White and bought a chair unseen. I was downstairs doing laundry when she called. She said we could pick it up in two days,I called Big Al and he said he would help by providing his truck.
  The attacks became more frequent and the living room,which had been put in such order,slowly became littered with empty bags,towels,cups and trash bags. I would no sooner change her,clean up and get her some cold water before she got sick again....I called the hospice nurse for some advice.
Thursday night came on and due to the fact she was thirsty and had went potty so much,I did two bags of I.V. fluids.
At 3:45 am,I couldn't keep my eyes open and I staggered up stairs after one last cleaning. I set the alarm clock for 7:15 am and was out before my head hit the pillow.
Friday,7:34 am....I awoke with a start....I heard Lori calling my name...I went downstairs and had the single worst moment in my life...Lori was askew in her bed,she had had several incidents during the night,her briefs was full and there was a mess on the floor. I have never been more fucking ashamed of myself then at that moment.
   I started to clean her up...there was just so much wrong,I called for the hospice nurse and our family friend Cheryl,who came over.
 I cleaned Lori up the best I could and called for the social worker,we needed to go to hospice today. But Lori didn't want to go...I explained what was going on and that I was being outmatched here. When Kassie came over and spent the entire 60 minutes trying to clean her,I made the call and asked for Lori to be transferred to Arbor Hospice.
  They sent over an ambulance for Lori...while I couldn't ride with her,they wouldn't let me drive because I was so tired. Cheryl drove me and I slept there almost the whole way.
 
   Arbor Hospice is a beautiful 26 bed center. There are 4 wings,each staffed with a nurse and a aide. Lori was having so many incidents,they couldn't really keep up...so I gloved up and chipped in. I noticed the odd stares I got from the staff as I cleaned Lori up,help roll her over,change her bedding,etc...
 I talked to the director,Dr. Marx and his resident,Dr. Breck on what we would do to slow down Lori's diarrhea. Dr. Marx suggested a medicine that would slow her stomach creating digestive juices,it sounded promising and soon after we went home.
Had a rough night at home...was overly tired and didn't sleep worth a poo. Got up,showered,grabbed some items when the phone rang,Marlene had left me a goody bag of snacks for my trip to see Lori.
She and her friend Joanna,also came over and cleaned up the bottom floor of the house. Big Al mowed the backyard with his riding mower...I'm very lucky to have such great friends.
  Saturday was supposed to find me at the Motor City Comic Con to finally meet Casper Van Dien and Dina Meyer from "Starship Troopers" with my fellow geek squad from work,instead I was making the trek back to Ann Arbor. Before I fell asleep on Friday,I sent out a request to any of my friends who were running/walking in the Komen Race for the Cure to write a quick sign on Lori's behalf and send me a picture.
Our friend Amy Lange at Fox 2,who ran as part of Amy's Angels (Amy Neilson's support group),not only created a sign for Lori but mentioned her fight on the air.



and here is the sign again:




And my friend and sports journalist Tom Leyden also created this sign:





Lori and I were so touched by this kindness....again,thank you so much and I'll be at the Race next year with my own army to help raise funds to stop this monster once and for all.

I am going to post this so I can take a quick nap before work.

Summer of '13

Its 7:01 pm

    Been a long day here....Lori is still in the hospital and is getting ready for one more surgery. The team is going to put in a vent in her side to allow her bowel to drain more freely. Its a risky surgery but given what we are facing,what do we have to lose? We're just hoping for a quick recovery time so she can come home.
I didn't go to the hospital today because I had so much to do here today,paid bills,decluttered like mad and Howard Burkeen brought his crew over to paint the bathroom and build two wheelchair ramps for us.

   Today marks the one year anniversary of Amy Neilson passing away. Those who have followed our journey know how much I have written about her and how much she helped me deal with Lori's cancer.
Last night,I connected with her husband,Don,on the phone last night and we chatted for 3 hours about everything connected to this ordeal.
  I am so thankful that I was able to talk about my fears about the last days...Don gave me several pieces of good advice and I am taking them to heart....when Lori and I talked this morning we both agreed that we are going to do the surgery,we want a last fun filled,friends and family filled,activities when we can filled summer.
No gloom and doom....just to live what life we have left to the max....and if we get to the Fall,so much the better!
   Some things we are hoping to do....
Plant some flowers
Attend a concert
BBQ with her co-workers
Soak up some sun
Have me walk a 5k in June
Have her family come over
Game night
Walk around the block
Christmas Tree Shoppe run
Finish the latest Dan Brown book
Meet my nephew Brayden

  So I'm going to really push extra hard and ask each reader to help send Lori cards this summer....I want our mailbox full every day,small bundles of sunshine that she can open and enjoy. Feel free to post our address in your church,your volunteer groups,neighbors,whoever. I want her to know how loved she is and how her life has been such a victorious one.
  Spent time with hospice today arranging to have Lori's hospital bed ready to be delivered when she is ready to come home.
And as I mentioned,I also had some help getting the upstairs bathroom painted along with a hole in the den and also two wheelchair ramps. Howard Burkeen,who installed the bathroom lights in our lower bathroom,is one of the nicest contractors you would ever hope to meet.He knows our situation and insisted that we only pay for a worker and materials despite my insistence that he charge us his regular price. He refused and headed out to get the paint that we needed for the project.
  Add to this kindness....a dear reader from Florida,Heidi,wrote how she was moved by Lori's will to live and wanted to do something to help. The kind person sent a very generous gift that is going to cover the making of the two ramps. This is the 2nd person who has donated money to us and we are very humbled.
And very grateful as well. Lori has asked me to work the bare minimal at my job,enough to qualify me for insurance when she gets dropped in August,she wants me to be close to her this summer...this has really left me in a true quandry,I want to do that as well...but just how feasible is it? We still have many bills to pay and that ambulance run is going to cost a pretty penny. Not complaining,just stating fact. Ambulance runs are rarely covered by insurance and that is anyone,anywhere. I want to be smart about this...I don't want to deal with this illness and go into debt as well...
And to my two co-workers who are reading this.....not going to happen.
I'm sure we'll figure something out that will be smart and allow me to spend time with Lori.

Called Lori to say "good-night" and she sounded very talkative but very tired. I'm hoping they are giving her something to help her sleep. She mentioned that Dr. Johnston sat with her for an hour while she talked about plans for the summer. Before Dr. J left,she upgraded Lori's "diet" to include popsicles. Pretty cool if you ask us!

Derek Jeter is starting to look for Ginger now,he hadn't really before but I heard him meowing last night and pop his head into her favorite sleeping area. When I popped the can to Fancy Feast,he headed into the small bathroom because that where I had to put him while I fed Ginger. He thought she was getting fed and was getting a head start to the bathroom. He looked at me and meowed when I called him back and placed the plate in front him. He seemed a little confused...

Our little dove is still sitting on her/his eggs,the trellis is suddenly going all green and the bird is slowing fading into the greenery.

 Don't forget to check out my newest interview with novelist Jan Romes,we still have three free books to giveaway! Sort of fun to see folks from Russia come by to check her interview. Going to start work on my new "8 Questions with...." tomorrow night with a very talented local artist. Might even be a freebie there as well! Stay tuned!

Anyone been watching "Person of Interest" this season? Its my favorite show on TV and I feel its the freshest,most complex shows I have watched. Just digging the blazes out of the writing the second half of the season...and if Amy Acker isn't one of the more under rated actresses working today. Her sweet demeanor as Root sends shivers down a spine because she is also crazy as hell as well. And I'm not entirely sure if she is really a bad guy or not as the people she has zapped have all deserved it....


On the music front,I see my old friend Ken Helwig has a brand new band,The Emptys",ready to roll out their debut show this summer. Maybe if he reads this,he'll send his old friend a demo CD so I can check his new tunes. Just a thought.....

I guess that its for now...thanks for reading!

Medical Update-Peaks and Valleys

Its 9:12 pm

    Cold rainy day here in SE Michigan...sort of fits our crazy weather this year that is for sure.

Like to thank you all for your support of my interview with writer Jan Romes. I do have a giveaway tied to this interview if you have a Amazon account. Jan has graciously agreed to giveaway 3 copies of her e-book "Stay Close,Novac!" to the first three comments left. Hope we can find some readers out there who would like a FREE book! (Now if I just had a account myself...)


Been another up and down week here...

  Had another wonderful visit by our friend and journalist Amy Lange,who dropped off a badly needed shower chair for Lori. This was an item (along with a wheelchair) that we have been waiting approval on for quite a while now. Amy came in and visited with us for an hour..she drove from her house AFTER putting in a hard day just to drop off the chair. I can't begin to thank her enough for her kindness (as well as her mom,Judith).
  I also worked up the courage to reach out to Don Neilson,Amy Neilson's husband. I have written many times about Amy and her fight against breast cancer. Her openness and courage in sharing her story was an inspiration for this blog. She helped a LOT of people,including me,in understanding just what cancer is and does. While we are still fighting hard and hoping for the miracle,I know also I have to start preparing myself for the worst. There are so many emotions that rip across my heart and mind of the time when Lori will leave me for a much better place.
  They say we cry,not because we are sad our loved one is leaving but the fact that we being left behind. I think I can agree with that,I am so not looking forward to coming home to a empty house,no kiss at the door,no 'ploring,no laying in bed watching a cooking show...but I do find it bittersweet that even after Amy Neilson has left,she still is lighting a path for me...in the form of her husband who I will be calling next week.
I have never spoken to either of them via in person or phone but I feel like I almost already know them,the kind of loving people they must have been. I know the upcoming months are going to be brutal but I also know I won't be alone,that my circle will surround us with love and compassion with our day comes.

  Its has been a pretty rough weekend...starting with Friday night at 1:00 am when Lori woke me with having to use the bucket...which was the first of six incidents,we haven't seen that since right before we had to have her admitted in March. We were up all night going through this...I had volunteered for a community project at work Saturday morning. I felt very bad that I had to call my manager and beg off because of what was going on...we started hydration early Saturday morning but the drip was soooo slow,too slow. I broke out another fresh I.V. line but still the drip was too slow. We called the visiting nurses who sent two nurses at two different times to try and solve our crisis. They changed Lori's port dressing but to no avail,the hydration took all day to administer two bags. I called off work to stay and administer the hydration,my work was very understanding.
 What really hurts about this...my hours are very limited at my job. I used to be able to work 40 hours with no effort but the healthcare reforms have caused many companies to limit part-time workers to under 29 hours so they don't have to provide healthcare coverage. This means our income has been chopped badly and losing the four hours on Saturday will mean a smaller pay check...and I already had low hours to start with. Its a perfect catch-22....
  While this was going on Saturday afternoon,our neighbor Marlene (Crash's mom) came by and said there was a missing 5 year old girl in the neighborhood and the entire day watch of the Canton Police Department was out in force looking her..
  I walked outside as a police officer walked up and asked if we had seen her. Marlene suggested looking in the child's basement while I suggested they call out Poncho out of retirement to help look. That actually got a chuckle from the officer who said Poncho's owner and partner,Brian,was already working the case with his new dog,Hoss.
   After 30 minutes,the officer came by and said the girl had been found.....in her basement. Can't say I was surprised as Marlene is a good mom who can think like a detective...she was hiding in the basement because had gotten in trouble earlier. Just happy she was okay and safe.
  I ran out of gas by 9 pm Saturday night and was out like a light within 30 seconds.
Woke up and went to work on Sunday,Marlene came by and helped Lori get ready for a visit from her cousins who live about 45 miles from us. We thought they would be here by 11 am but they wanted to come later so they could overlap with my coming home.
  But since I didn't know this,I went and got gas,picked up our blanket from the dry cleaners and faxed out some important paperwork before heading home.
   It was 3 pm before I got home...but still had a lovely visit with Lori's cousins. But as they could see Lori was fading,they all left at 4:30 for their ride home.
  As I was hooking Lori up for another slow drip I.V.,Marlene came by and dropped off a dinner for me. Between that and some great pasta that our other friend Cheryl dropped off,it was the first back to back home cooking I had in months...and I was very grateful to them for going out of their way to help us. We really would be in a bind if weren't for Kathy,Amy,Marlene and Cheryl. Thank so all so very much...
  Sunday was rugged again....for the first time,I measured what Lori's fluid loss compared to her intake...she lost 55 oz versus 20 oz of intake. I should have taken her in the E.R. but she said she didn't want to go...
Today....we had our scheduled appointment with Dr. Johnston but no sooner had I hit Dixboro then Lori started having terrible pain...and it was getting worse. We had taken a Norco but this pain blew past it.
Got to U of M Cancer Center and went for labs....when the RN had a hard time getting a draw,it was then we learned we had the WRONG size tubing in her port. This was why we had such a hard time,but how two visiting RNs missed that,God only knows. The I.V. wasn't working as well because of the wrong tubing.
They completely changed Lori's dressing and got the labs done.
   Up to the clinic we went,Lori's pain is getting acute...in fact so much so,our visit was cut short as Dr. Johnston ordered us back down for a morphine shot and 2 full bags of hydration. God was with us again as we went down,the infusion clinic was getting full. But one of our nurses from local infusion clinic,Karen,saw us and instantly stepped in to help us. By now Lori is getting sick from the pain and I'm about to wheel her to the E.R. when finally after a 40 minute wait (it would have been longer w/o Karen) Lori was hooked up to a MS shot and hydration. We were there from 7:30 am til 4 pm.
   So we are now home...and I'm writing this and hopefully,you're reading it as well.

While I posted on my Wall about what was going on in the cancer library,a young man came in and wanted some books on how to tell a child about a parent's cancer. His wife just learned she has breast cancer and she looked shell-shocked. The husband was getting materials on how best to tell their 6 and 9 year old that their momma is pretty sick. I really hope she can beat it....

  I want to share this story with you all just in case you feel like helping this family. This man was shot in the head as he was getting ready to come home and was instantly blinded when the bullet went into head.
As wicked as you may feel you have it,there is always someone worse off then you...I hope you take the time to read Sean Kelley's story which you can see  right here.





 

Please keep the cards coming! They are a great morale boost to Lori!

Lori Sullivan
45249 Lemont Road
Canton,Michigan 48187

thanks for reading!


Feel free to drop a comment or pass along this blog to anyone who you feel it may help.

Back to Ann Arbor and other adventures

Its 11:00 pm  Friday

     Long day here.....got up early to give Lori her meds. Last night's plan to attack her pain and not let it get to nausea was working great...had a good day of food intake and water as well...even climbing the stairs was good as she managed to climb them without stopping once. I stand behind her just in case she loses balance,she doesn't climb the stairs until I am home. Things were looking great...I gave her the last med of the day,the vankomycin at 1 am and we both went to bed.
   At 3:10 am I felt her jump out of bed,I was right behind her...just in time for her to become violently ill.It was just awful,all I can do is hold her and help her through the incident. I then clean up everything,have her rinse her mouth out and get her back to bed as soon as possible. Its back to square one all over again...
 Today we puttered around the house a bit,we have started gleaning through Lori's clothes...tackled a huge bag and divided them up...we kept some,gave 3 bags full to our neighbor Marlene (Crash's mom),put two aside for Purple Heart who will be by Saturday.
  Then she cleaned out a hutch and I took some boxes to the local consignment store. When I switch my wardrobe to the summer,I too,will start the process of downsizing. Its just an another step in the journey.
Lori then took a nap for a couple of hours before we had to head over to St. Thomas a' Beckett for a 2 pm appointment.
   We met Debbie Miller who ushered in Lori into a private room,she was going to join the church and also ask about a Catholic burial. I sat outside and read a little church journal that they give out after Mass on Sundays. The secretary came out and started moving the boxes,I chipped in and moved the four boxes to where she directed me to and then sat down.
  As I did,I noticed a pretty blonde woman coming out from the pastor's office and a young man heading in.
She was looking at the CDs and I couldn't help but ask if they were for a wedding meeting. She shook her no and I could see tears in her eyes. I stood up and apologized for intruding,she said it was okay.
  Turns out she had just gotten a divorce,one she never wanted. She and her husband had only been married about 2 years. Seems like he was more in love with his work then her. Turns out he was a engineer at Ford and they had moved him to Louisville,Ky to an apartment for 10 months while he worked on the 2013 Ford Escape. She stayed here to work and continue to go to school. She mentioned that she even turned down a promotion because it would cut into the time she could spend with her husband. She said when she had visited as of late,he wasn't happy to see her and seemed resentful. She said she knew it wasn't another woman but his job that he was in love with and soon he asked for the divorce.
  We talked for another 5 minutes and then she hugged me and left....
I sat back down and started reading my booklet again...15 minutes later Lori came out,both women had tears in their eyes. I thanked the pastor for her help and gently walked Lori back to the car. I shared with her the woman who I had just met...we made small talk as I stretched out the drive back home.
 Friday night was quiet and we celebrated as Lori didn't have her nasty nausea that leads to her having a vomiting episode. This was pretty exciting to say the least!
  Saturday rolled in cold and brisk,after washing up...I headed down stairs to get Lori's morning meds and her breakfast. I quickly cleaned up around the house and pulled some steaks out. Lori's brother and his wife were driving down to stay with us this weekend. We were both very happy to have them both,Brian has really been aces these past 3 years when it has really counted. They got here at 12:30 pm and we enjoyed a soda (Lori had lemonade) and chatted before I had to leave for work. Turns out that they had made a ton of good food that they wanted Lori to try and eat. Normally,this would have been great but since they don't really know how restricted a partial bowel obstruction diet really needs to be. Brenda(Brian's wife) is a great cook and she made a lot of homemade soups. They really felt that Lori could handle this okay,we were both very sure this would be a mistake but we agreed to try it.
  Our neighbor Marlene and her son Dylan came down to meet Brian and Brenda and we ended up borrowing Marlene's grill to cook our steaks. I set up the table and helped prepared Lori's soup.
Dinner was good but the soup was very rich and Lori only ate half.
 An hour later,she lost it....but after that they seem to finally understand that we have been trying anything and everything to help Lori eat AND retain it. Sunday morning found me saying "good-bye" to Brian and Brenda as they were leaving at noon to head home...it was a great visit overall and we really enjoyed our time together.
  Monday morning came round and we got early to get ready for our visiting nurse whose name is Amy...those of you who have read this blog for a while know why the name Amy is so meaningful to us. Our nurse Amy is a no nonsense yet compassionate nurse who really seems to like her patients,she is the one who taught us how to injection the antibiotics that were needed to kill Lori's E Coli infection and she'll be the one to show us how to do home hydration as well.
   At 10 am Amy came by to draw blood for Lori's appointment with Infectious Diseases but couldn't get ANY blood. This was a bad sign as it meant Lori was dehydrated once again because she had thrown up a huge amount the night before. Phone calls were exchanged and Dr. Rusk instructed us to head to the ER again and he called ahead to clear the flight plan so to speak. It took me an hour to help Lori get a shower and dressed,she was pretty weak in the legs. Finally we were on our way once again....the 20 miles flew by,I turned on the Tigers baseball game and she fell asleep almost as soon as her head hit the backrest.
We rolled into the ER and walked into a full house of patients. I got a mask for Lori and checked her in,based on what I was seeing,I should have brought a book because there was no way we were going in front of at least 30 people. I got my visitor's badge and started to wheel Lori to the waiting area when the  nurse said "Nope,we have been expecting you and held a bed for you". I was very grateful and said "thank you" to all the nurses at the Triage desk.
  We were put in Room 47 and I helped changed Lori into her gown as a nurse got her two warm blankets.
As we sat there,the nurse did vitals and said that Dr. Rusk wanted X-Rays done. Our nurse,Mike,said he would be back to start the hydration...5 minutes later X Ray came and got Lori. Now that just doesn't happen hardly ever that fast so it pretty cool to see Mike come in and see Lori was already gone to x-ray.
Soon she was back and hooked up to her hydration IV. Two different doctors came by and wanted to do a CT scan and to do this meant Lori would have to have a NG tube placed down her throat again...she really didn't to do this as it was such a awful ordeal last time. I was absent when it happened the first time because the room was too small...but I was going to see it this time. She started crying because she knew it was going to hurt...a lot.
  The two nurses came in and told us what to expect...and can I tell you,it was awful. I held her hands as they inserted the tube,but they were missing a couple of pieces they needed and start scrambling to find them while Lori was crying. You sort of want to scream "What the fuck!!" but you don't,you have entrusted these two to take care of your loved one. I only said "Really????" as they hurried to finish the inserting of the NG .
   Lori said the tube was in too deep and asked for it to pulled back a little...we ended up having to wait an hour for doctor's orders for another set of x-rays. While we were waiting the ER doctor came in and said it looked we had a full bowel obstruction and if the CT showed that,he said we would be facing surgery. We both looked at each other and quietly shook our heads "no".
 Soon after Lori was wheeled into x-ray again and sure enough,the tube was in too deep and it was a painful process to withdraw it a little. While we were recovering from that,Dr. Brown from Lori's oncology team showed up looking none too pleased with the fact they had inserted the NG,she said they should had waited for a consult before doing that and that Lori didn't have a full obstruction. She canceled the CT scan because she wanted Lori to rest overnight.
  Now here is what sort of twists us up..see,Lori really didn't get a chance to eat like she usually does. During the course of a day she can drink 3 Boosts,pudding,chicken broth and other clear food items...its at the end of the day where she will present the vomiting. But with a empty stomach and already throwing up due to the NG tube,she wouldn't show in the hospital what we have seen here at home. We're afraid they're going to observe nothing,send her home and then we'll be back in the same cycle.
  Because that is exactly what has happened....she had a painful night with the NG tube but did not have a measurable bile output nor did she throw up. Dr. Brown pushed back her CT scan until Thursday and we can do it at the medical clinic where we get our infusion.
 I picked Lori up at the hospital after a 2.5 hour wait to be discharged and drove us home. I made a quick run to CVS for a prescription and then stopped at a Chinese diner and picked her up some soup which she ate with no problems so far. She has been sleeping pretty much since we got home...

  Tomorrow I have to make a appointment to take Ginger in,I'm afraid her kidneys might be failing. I am really hoping I'm wrong but my heart is telling me I'm going to be right....not the news we need to hear right now.

Got more lovely cards today....another sweet card from our journalist friend Amy,my old bosses from my music days Ann and Jacek (your words made us both choke up Ann,you are a wonderful writer!) and Lori's co-worker Jo sent her a Easter card. Thank you to all of those who continue to send cards and notes. Including a wonderful tray of jello from our friend Cheryl,a very talented piano teacher who played at our wedding....feel free to keep them coming!!

I'll write again after Thursday's CT scan and results.

Saying goodbye to Amy.

Its 2:41 pm

   Last night I read that Amy Rauch Neilson had passed from her breast cancer. She had been fighting for many years which included a period of remission. About two years ago it came back and she had been hitting a brave fight ever since.
   Regular readers here and the IC group have heard me talk about Amy and her fight for a while. I never met Amy or even talked to her except via email but her blog and those emails helped a very scared husband come to understand what my wife was facing in dealing with her cancer. Because of her,I was able to read about therapies,questions to ask our doctors,how to prepare and react to both chemo and radiation. Never once did I ever feel out of my element and a large part of that was because of Amy Neilson.
 I cannot thank her enough for sharing her illness and fight with us,her legacy,one of many,will be how her writing in what she was going through helped so many others either deal or overcome this terrible monster and how not to let cancer define who we are. I am terribly saddened at her passing,I sat here last night and wept for her husband and her little boy. Such a tight loving little family who lived life at its fullest. I have taken that to heart and despite facing many hardships even today,my wife and I are living our lives with that gusto...we never let this slow us down and inspired by Amy,we'll continue to do so...no matter what tomorrow may bring us.

Its a cool chilly day today,overcast and grey. Listening to some Mermaid Kiss on the iPod while typing this entry. Derek has moved his prime sleeping place from the bed to in front of my dresser drawers. He is curled up in a big ball of fur and looks very peaceful.
   I'm waiting for a gentleman named Leon to call me,we decided we are getting the gutters cleaned this week. We have used a website called ServicePro which is sort of like a Angie's List except that its free to help us find a good service. So far we have been very happy with the quality of the help,the repairs we have had done have been fairly priced and as I said,the work is good.
  Would have done this earlier except I had to go to the dentist at noon and after taking advantage of a free coffee coupon from Biggby's,I didn't get home until 1:45 pm so while I'm waiting,I'm doing this blog.
  Last week I wrote about a 54 year woman in my subdivision who committed suicide by setting herself on fire. While we had thought it was on the other side of the subdivision,it turns out it was about 500 yards from our home and I never heard a peep,no sirens,no screaming,nothing. Its pretty sad,I have walked that cul-de-sac where it happened a few times but never have seen anyone outside as I tend to walk at night. Still....its the 2nd major incident in this sub....a couple of years before we moved here,a man was tied up and beheaded by two teens who are now locked forever.
  Overall our neighborhood is very quiet and we have some very nice neighbors. I just wish whatever demon that woman was living with hadn't caused her to kill herself like that.

  My wife called me yesterday morning,she came across a homeless person living in her car and she had parked by my wife's job. She was scared at first because she thought the girl might have been hurt by the way she was lying across the seat. Once she could see inside,she saw the girl was sleeping on a pillow.
The car looked very dirty and the sleeper looked like she may have some mental health issues as it appeared she had hoarder issues based on the look of the car.
   Lori asked if she should call the cops but I said as long as she isn't bothering anyone,no harm is being done. Despite the recession,we have hardly seen any signs of homelessness in our area which does surprise me a little. We have seen 3 people in the past 5 years who have appeared in this condition and that is despite the foreclosures in our town. The only sign that people are still struggling is the skyrocketing of shoplifting that is coming from the poorer people. Not a day goes by that 2-3 cop cars are at the local Walmart/Kroger taking away a shoplifter(s). My wife's store has been a few times by a few folks as well.
  But as far as people walking up and asking for money or food,not really seen that around here.
Lori called her assistant manager and asked her to drop by McD's and buy a breakfast meal for the young lady but by the time it got there,the person had woken up and driven away. Hope she will okay.
  Alrighty then,the gutter guy called and is on his way....so its time for me to scoot.



Thanks for reading.





Thank you again Amy.

Saturday Randomness

Its 10:55 am

    Its a beautiful day this morning. Its time to get in a walk,pay some bills,listen to some music and finish reading the Tom Delay book. I also have done something I haven't done in a very long time...I bought some new(ish) music,our local Dollar Tree got in some CDs and I ended up getting 3 of them instead of books. I'm actually sort of proud of myself for not buying anymore books on this visit..
 
Its 8:11 pm

    Back at the keyboard.....Chely Wright is singing sweetly on the iPod. I love her voice,it has such a soulful feel to it but with a country twang. Chely was a staple on country radio because of her voice and a popular video artist because she is a real beauty. Always thought she should have been a much bigger star,great vocals,looks and a writer? That is a rare combo in country music that you see these days. Ironically I found her album Metropolitan Hotel in the same Dollar Tree store about 3 years ago. Funny how that goes.
  The day wasn't exactly what I call a barn burner,paying bills,sorting and filing coupons,cleaned up the cat boxes,laundry and general house work.
  Was talking to a fellow writer who is a novelist today,she was having problems coming up with a workable plot for a chapter of a book she is writing. I told her I can relate,have always struggled to write smoothly and easily,some days the words flow and I can write a lot of good stuff and then I have days like today where I'm fighting to put words down. It helps I have music playing,it help relaxes me but I think the fact Lori is gone to see her parents and getting some sad news last night has stalled me out a bit.
  Last night I read that Amy Rauch Neilson,whose blog "Its In the Genes" is listed on my Blog I Follow list,is really struggling now with her cancer. She has fought breast cancer for years,it went into remission and then came back. I discovered her because of a local news story that journalist Amy Lange did on her brave fight.
  Because of Amy's blog,I was able to learn what to expect in some respects what Lori and I were facing.
For a long time it seemed like Amy was making great progress until she somehow broke her leg shopping at a Kohl's store during Christmas. Since then it has been 1 step forward and 2 steps back.
 So when her husband posted last night that her cancer has spread to her back and brain,my heart sank. Now she is facing 6 weeks of radiation to try and stave off this latest attack.
  I wrote my journalist friend Amy Lange about how you are filled with both nerves and dread when comes to seeing your oncologist. You can't wait to see him/her to see what needs to be done yet when you do a test or a lab,you are filled with dread at what you may hear. And of course sitting here alone with nothing but my thoughts to keep me company,I can't help but think what will be our next step....will it remission or will it be another round of chemotherapy/surgery/radiation? I pray every day for the strength to keep a smile on my face and a song in my heart....and admiring the hell out of Dan,Amy husband and caretaker. I know I'm Lori's rock and I will never bend or break. I ask all of you who are reading this to please keep the Neilson family in your prayers,they really need us all now.

   Picking up on a thread from my last entry.....seems that a man walked into a BP station in Detroit. He got into a beef about the price of some jimmy hats with the clerk. The man and his friends started causing a bit of a ruckus,tossing displays around and knocking items on the floor. The man said the clerk overcharged him and wanted his money back...the scuffle ended when the clerk grabbed a gun and put a bullet into the man's shoulder. The man's friends rushed his to a local hospital but he bled out before they got there. The clerk was arrested.......all for a box of condoms. And City Councilman Kenyatta wants armed guards at these stations?
Only in Murder City....

  The USS Enterprise (the Big E) is preparing to sail into the sunset. Its the largest active aircraft carrier in the US Navy and has been an important part of the Navy for 50 years. It was only due to serve 25 years but it was overhauled in 1979. Built in 1958,she was launched in 1960 and in 1962,she sailed on her maiden voyage. The USS Enterprise saw action during the Cuban Missile Crisis,the closest the world has come to nuclear war.
The Big E also served in the Vietnam War but not without cost. A missile aboard a F-4 Phantom blew up on 14 Jan 69 which killed 27 crewmen,wounded over 300 more and destroyed 15 planes. This forced the carrier into Pearl Harbor for repairs.
 Whenever there was a cause for a show a force,the USS Enterprise was often the first carrier task force,be it  Vietnam,Korea,India and now Iran. This final deployment will be for 7 months and then she will be decommissioned,defueled and scrapped by 2015. But she served this country with pride and honor.



To learn more about the USS Enterprise just follow the link....

Well that is all I have for now....comments are always welcome.

Action and adventure in the ER plus some football and a call for supporting a real fighter.

Its 11:27 pm

  

    I know...a rather late time to be starting a entry but I do have a reason for it...

Last Thursday afternoon I noticed my back was starting to hurt. I put it down to our bed,we have a IKEA bed and sometimes to slats that support our box spring fall off,causing a uneven platform and it cause my back to get tweaked.

It started hurting quite a bit and I was a little surprised by how much. I was able to still attend my CERT class but I was uncomfortable.

  I mentioned to Lori that I might have to have my back adjusted on Friday but the pain actually calmed down and I was able to stand and sit okay. I used a heating pad and took Motrin to try and make the back happy.

 It seemed to be working until Monday morning when I woke up in major discomfort,the pain was back and has moved to my groin area. And no matter how I sat,laid down and stood,I could not get comfortable and the pain was increasing. We had hoped to wait til Friday until seeing the chiropractor but this morning was even worse so I called the guy who adjusted me before. He couldn't see me til 2:15 pm so I had to hang on til then. I took more Motrin to help with the pain,it did very little and I was feeling worse by the minute,the pain was getting unbearable. 

It wasn't until I felt like I had to throw up that it hit me,I had a kidney stone. Now I have seen a couple of big men reduced to tears because of kidney stones,they are no walk in the park. I could barely move when I called Lori and told her to come get me,I had a kidney stone.

  20 minutes later I was being wheel chaired into the ER at my "favorite"place,Oakwood. I was checked and then the fun started in earnest. They only have one ER doctor on call so I had to wait. That wasn't a problem until the pain level started going up. Anyone who ever had a kidney stone knows what I'm talking about. That was the worst feeling I have ever had in my life,I thought I was going to toss my Oreos (happy 100th birthday by the way) it hurt so bad.

  Had to draw on my 3 guardian angels who gone through so much worse then this and come out with flying colors,soon I was given two very strong drugs and an IV drip. Ended up getting 2 more doses before being wheeled for a CT scan. Then I managed to sleep for 3 hours,the doctor wanted to drugs to have a chance to move the stone out.

   In all we spent 6 hours in the ER before being given the green light to go home. I don't think I passed the stone as of yet but I'm not nearly as much pain either. I had to keep gently pushing Derek off my hip because he is just too heavy for me right now.

 I'm taking it easy today that is for sure.....

 I love college football...as I have stated before,its my favorite sport. While I follow the mighty San Jose State Spartans of the WAC conference (so,okay...going 5-7 and losing by 54 to Stanford doesn't evoke "mighty" but this year will be different!). I enjoy spracking with my buddy John down in Florida who is a Miami Hurricane fan. We also talk about smaller teams as well which you hardly ever see these days as most fans root for the big boy teams like Ohio State,Miami and Oregon. You never run across a New Mexico State or Eastern Michigan fan that actually admit it.

  Being a fan means you like to know who your school is going to be playing in the future. It helps create excitement when you see two teams you follow finally matching it up on the gridiron. A lot of games you see played have been scheduled years in advance but schools don't always release the advanced schedules.
So how do you find out about a favorite team's advanced schedule?
For the average fan they would have search the internet for bits and pieces. But about 12-15 months ago,I stumbled across FBSchedules which lists all 122 FBS teams along with the upcoming NFL schedule. But mostly its aimed towards the college football fan. Created and run by a die hard U of Georgia fan,Kevin Kelley,every day has some new press release on a either a new big game added,the news about the massive league realignments or schedule changes. Each team that sends Kevin a release gets equal coverage,ALL 122 TEAMS get equal billing,just not the BCS leagues. It has taken a while but more and more fans have discovered the site and the comment section is really starting to get lively. FBSchedules also has a FB page as well with almost 4,500 fans.
  So take a minute and cruise over to FBSchedules and see when that big Savannah State-Florida State will happen. And ask Kevin when UGa is going to grow a pair and schedule the game everyone wants to see...San Jose State-Georgia. Its hard to have a rivalry when one team keeps ducking the other.

Lastly but the most important.....please keep our fellow cancer warrior Amy Rauch Neilson in your prayers. Amy,who has fighting stage IV breast cancer,has been really struggling as of late having landed in the hospital 3 times this month along. Her cancer has reached her back and she is now facing a new round of radiation. Now radiation is rough on a fairly new cancer patient but each time you have to go through this really does weaken your body tremendously,this why it is so controlled as far as dosage and length. And Amy,already trying to come back from a broken leg last Christmas,is now facing this new hurdle. And we have to keep her husband and caretaker Don and her little boy up in prayer as well. Amy is a real hero and it is very important to any of us that are or have gone through this fight to help keep going.
Her blog "Its All In the Genes" is listed on my blogs I follow list....so please take a second and pay her a visit and encourage her. Tell her Michael and Lori sent you.....

  Well that is all I have for now. My back is starting to really hurt again so I'm grabbing my cat and laying down for a few.

Thanks for reading.


Kevin- Thanks for creating such a great site and for having fun with our"rivalry"
Scorpion- Google+....going to need a pathfinder for this one!
Amy + Don - Prayers are with you.
U of Michigan Hospital- You need to hire Dr. Weaver from Oakwood
Beth- Thank you for the follow! Very cool indeed.