Reflections,Candye Kane and baseball

It's 4:26 pm

   Looking outside at a nice day...its a bit overcast and muggy. The last 5 days have been like this,we get humid and steamy,storms pop up,it rains and then goes away. It is almost like being in Florida. Guess we might get a bit of a summer yet!!

  Past week has seen its highs and lows. Had a real sad patch of 3-5 days of feeling like Lori just left me. It felt like the day of her death and I really started to flounder badly,lot of tears and wanting to pack my bags. I always wonder if I am the only one to feel that way,are feelings solely my own. Am I the weirdo widower in the room? I am both saddened and relieved to know that these feelings are natural and not uncommon. Saddened to know others are feeling this terrible and desperately wanting to go home by any means possible and relieved that I am not alone in feeling this way.

  The trigger was trying to clean up our spare bedroom. I really hadn't been in the room for about a year other then put my winter bedding away. Otherwise I have not gone into the room for any reason. So I started looking in the top drawer when I saw a card with two tiny birds and the word "lovebirds".
The card was was from 2005 Lori and I went to Washington D.C. for vacation,she wrote how much fun we were going to have and how we were going to have so many more in the future.
 That was all I could handle and I started to cry. I put the card back and walked out of the room about 60 seconds after I walked in.I was pretty saddened at this,that it still absolutely like she passed that day. I tried to de-stress by going down in the basement and cleaning Paladin's box and doing some laundry.
But my week was shot,just beyond sad and missing Lori....struggled hard to finish my last week of overnights at my job. We were doing inventory prep and only had a 6 man team to prep a huge store....

  Saturday presented a new challenge for me....a co-worker's brother had died and his viewing/funeral service was being held on Saturday afternoon. My friend Sue and I drove over to pay our respects. As we got closer Sue told me about the funeral home,it was one of the smallest ones she had ever seen and as we pulled up,she wasn't just whistling Dixie,it was incredibly small,it was there first and the city built around it. A apartment complex was directly behind it as well as a pre-school right next to it. You could only drive in one way to park and parking lot was pretty narrow.

   Sue and I got there just as the service started...the little chapel was packed,my co-worker's brother was a popular guy,well loved. It felt surreal to be standing there...so many fresh memories and emotions. We stood outside in the hall as the chapel had no seating left. The pastor gave a nice service,listening to little stories and tributes sort of gave you a idea of what he was like. While laughter was there,tears were the order of the day.
  Two of our fellow co-workers came as well....as we watched,I could feel myself start to hurt inside,the room was getting smaller and the sound of crying was starting to effect me. Well Sue got a urgent call and we had to go about 5 minutes before the service did.
  I was both happy that I had lasted as long as I did and didn't waver. I was only sorry I didn't see Linda,my co-worker,who supported me during Lori's cancer. She too,lost her spouse only a short while ago..and now this...

 
So while I was wrestling hard with this,I made plans to attend my first concert in forever. I missed seeing Dave Alvin in July but another of my favorite singers was coming to Ann Arbor.
  I first saw Candye Kane back in 1992 when she opened for a great roots rock band called The Blazers at the Cactus Club. I was completely blown away and went on to maybe 12-15 shows in San Jose,Santa Cruz and San Francisco. One of my last shows at the Agenda was a Candye Kane show which was really well attended and just a great vibe all the way around. I helped the band load out and thanked her for a great show,she kissed me good-bye and that was the last I saw her,that was in 1998.
  Flash forward to 2008...Candye breaks the news she has pancreatic cancer and is facing a life and death struggle. I started to write her via social media and sent encouragement just as thousands have done. She has multiple surgeries, including one where they used 150 plus stitches to sew her up.

She tours,undergoes chemo,records,more chemo,flies to Europe,huge medical bills starting to pile up. Fans rally around her as she undergoes more treatment,she was once weighed around 270 pounds,not anymore she writes.
   Lori gets sick,my writing to her becomes less and less as Lori gets more and more ill. Candye is fighting so hard as is my Lori but Lori is fading now,no letters now,just blogging here. Candye writes me,wondering how we are doing,I sent her my blog.
  2013....Lori is gone in May...a cancer that was preventable has taken her. Candye,with a cancer that normally kills within two years,is still alive and shining brightly. I write her twice in the past 18 months,once to tell her Lori has died.

 But now Candye is coming back to Michigan,playing the Ark. I haven't seen a live show in 5 years,haven't been to the Ark in years when Lori and I saw Kim Richey play. I reach out to my friend (and frequent guest blogger) Susan to see if she would like to see Candye. She is game and we make plans. I also ask my other Sue who is also game for a show.
  So here we are last Tuesday meeting at my home to carpool to Ann Arbor. It looks like a thunderstorm type of night as it starts to get ugly. Paladin the cheetah is sitting in the windowsill which is open...when a huge bolt of lightening flashes and thunder cracks across the sky. Does the cheetah run? Hell no!! Paladin sits there and meows good-bye at us....


   The rain dies out as we leave our town and head to Ann Arbor,we went via Michigan Ave. so it was mellow as far as going into town,no passing the UM Hospital.
 Downtown Ann Arbor was buzzing with life as we headed to Main St. Lot of places to eat,drink and be merry but not so much in terms of pure shopping. Last time Lori and I were downtown Ann Arbor  was about two years for the art fair. We had a good time but we couldn't stay very long as Lori got tired pretty fast back then.
  But the same kind of buzz was still going on....tons of foot traffic and construction cranes all around.
Parked our car and walked to the Ark,got our tickets and seats. The Ark shows pretty much start dead on time and so at 8 pm,her band,led by the amazing Laura Chavez on guitar,hit the stage.
  They played two instrumentals and then Laura introduced Candye. Wow....I knew she lost some weight during her cancer journey but I wasn't ready to see how much she had lost....and she looked GREAT!!
The voice was still quite strong but the Ark's sound system leaves a lot to be desired so her vocals were bit muted. The small mid-week crowd was fully into the show and Candye sang a lot of her favorites "I'm the Reason Why You Drink", "Toughest Girl Alive" and "Superhero".

 But something started bothering me as the show went on,in between songs,Candye shared her journey on how she was so happy she was still alive and how blessed she was .While I am happy she is doing so well,a miracle in fact,I found myself feeling more and more upset....bitter and resentful,something I never expect to feel when talking about about a cancer survivor. I mean,I harbor no ill will towards Candye herself,no one thinks that of course. It is the whole process....like another widower said when he mentioned he doesn't go to any of the cancer events (Relay For Life,3 Day Walk,etc).
 
 "It isn't because of the people,it is because of the sheer greed of the medical field in treating this. Billions in research,drugs and fund raising and there isn't even ONE cure for any one cancer. It is always hope for a cure but never any real answers. People and companies get wealthy off our blood,loss and broken souls but won't even allow for one cancer to be cured".
Caught this wonderful and telling blog entry that is very worth checking,just click the link to check out the blog.
  Taking a quick run through some search engines,I find this emotion is not publicly talked about,but it IS talked about. I have discussed this with at least six other widowers,widows,parents,children who have lost someone to cancer but have a hard time being around survivors/events. The feeling of "why only some but not all" is a strong feeling to feel but as you are reading this,much,much harder to express without being criticized for it. Personally,I don't care if I am or not...I am just sharing just another part of my journey. I'm saying its a normal feeling to feel anger and resentment but to make sure you know who you really directing that to.

   Back at the Ark,the show was a extremely good one and Candye played two encores as she received a standing ovation (which she deserved).
  One very sweet part about Candye's show,while she is tries to push her latest CDs and shirts,she also has a CD, "The Power In You" which she sells but knowing a lot of folks may have just enough money to see a show but not afford a CD,she gives those away. It depends solely on the honor system that if you can't afford a album,you can either pay what you can or get a free CD. Very sweet gesture indeed.
  We hung around as I wanted to say hello....and playing thousands of shows since 1998,I didn't think she would remember me at all...which she didn't until I mentioned the Agenda Lounge show. Then her eyes opened wide and she smiled. She said Laura was from Mountain View,then she really remembered when I mentioned Lori. She whispered she was sorry in my ear,grabbed the CD and signed it for me. She had a lot of fans to meet and greet so I let her go. Laura and I talked as we talked about the EDGE and she had been in a band that opened during one of Jimmy's Y&T shows.
   We said our last goodbyes and headed towards home. Both ladies loved the show and said they were glad I shared Candye with them. I was just glad to be able to see a live show again. I don't know who I will be seeing next,only that it won't take 5 years to see it.

  Seems like Dollar Tree Theater is catching on....had a couple of people both mention Dollar Tree Theater in telling me about a couple of new (to me anyways) discount stores in our area,a chain called "Ollie's" and a store called "Five Below".  Said they had some very low prices on books and DVDs.

  So took a ride to Ollie's last week and took a peek. It wasn't too bad but you have to pick and choose as not everything was that cheap. The DVD section was so-so but I did find a couple of Dollar Tree class deals,20 war movies for 2.99 and the short lived "Lonesome Dove" series for 7.00. Also picked up Terry Francona's book about the Boston Red Sox 2004 championship year for 2.99. Thought it was worth going but you get the feeling the turnover isn't very fast and that in 3-4 months,you would be looking at the same stuff.
   Haven't been to Five Below yet but I aiming to venture there this week to take a peek.

 

   Heading to Detroit on Thursday to watch the Yankees-Tigers play. While the Yankees season has been plagued by injuries to the pitching and termites eating the bats,the Tigers zoomed ahead in the AL Central. The Yanks were at one time in 4th place while the Tigers had a commanding lead in the Central....but suddenly the Tigers have started to crumble,stumble and bumble their way out of first while the Yankees have moved to second place in the East. Now as this writing,the Tigers and Yankees are fighting for the last wild-card spot,the Tigers are a half game back while the Yanks are hanging on (barely) at 3.5 games back.
 This series not only will help figure out the wild card but marks Derek Jeter's last regular season game against Detroit. This will be my first game in 4 years,Lori and I took her Aunt Jo to see a game against Tampa Bay back in 2010.
  This time I will be seeing it with our friend Deb,who got me a ticket for my birthday next week. I am very grateful that so many people have shown me kindness during this time. I never take such acts lightly or for granted...it helps me stay grounded here. And paying it forward is a common theme here in my blog and so I will be looking for a new Pink Hat mission come September,don't know what it will be yet but it will happen.

 
Well that is all I have in my tank....I am heading out to do a little walking. I am re-joining the gym this week so I want to start walking before winter gets here.

If you are on Twitter, follow me @Jinzo_2400


Shout outs

Candye  - May your miracle continue!!
Susan and Sue - Thanks for allowing me to share Candye with you
The Fluffy Twins - just because!
Deb,Cheryl and Marlene (Crash's mom) - thank you for the birthday goodies!!
John,Justin,Darryl - thanks for talk.
San Jose State football - Beat North Dakota
Bene Benwikere - Spartan Strong!
Monte - thanks for the phone call!

20 May 13

Its 11:39 pm




  Dear Lori,
      Looking back at my posts during this time last year,I find myself rather shocked at how all over I was. I never really wrote what was really going on in my heart. I look at my posts and seen a sense of complete denial and fogginess in my writing...but lucky for me,I have complete retention and I need to write what really was going on 20 May 13.

   I last saw you on 18 May..never did I think that would be the last time. We knew our time was running out,I called your brother and he was very shocked to see how fast the end was coming. We agreed to have he and your father come down for the day to say good-bye and I chose to let Brian and Phil have you for the day while I went to work that night.
  Work...what the hell was I thinking? Working for 4 hours because I needed to be able to switch insurances because your insurance was going to run out at the end of June. I had to work a certain amount of hours to stay eligible...again,what the hell was I thinking,once we went into hospice,we knew there wasn't going to be a June. All those plans that we had for our last summer together...I have done nothing on that list we had planned,no cook out,no Tigers game,no concerts,no ploring,not even a trip to the Christmas Tree Shoppe or Home Goods. Part of it is because of the money situation,part of it is because of a lack of drive.
  I keep trying to jumpstart my life but there is no life to jump back into.
I should have filmed us more,no matter what....

  One day.

One day.

I needed one day. I was going to work Sunday night,pack a bag of clothes,go to the funeral home to set up the service and then stay with you until the time you would go home.
But I was scared,I didn't want you alone. I wanted someone with you until I got there and so I did ask for help. Tammy and Jomana from your work volunteered and that made me feel better. I packed my bag,put it in the car and went to work.
   I got home and was surprised to see Jomana had left a message saying she had come home. That dear sweet lady,she braved overcoming her stress about driving at night to go to Ann Arbor and sit with you. She said how sweet you were when you woke up and saw her sitting there. Asking her "how did you find me"? That is the same question I ask myself every day,how did you find me,Lori? Of all the people,you chose me,a very flawed man in California with nothing really to offer you but my heart and love.
  Jomana stayed with you until 2:30 am....and I am so grateful for that. In the dark night,I want you to know that I was ALWAYS thinking of you. Oh but to go back again...I never would have left your side..

7:10 am

Its Arbor Hospice,I answer the phone and get the news,you have left this world,alone,at 7:03 am.

I cannot begin to express how heartbroken I am...dying alone was not part of the plan. I lay awake at night thinking about this,did you look for me? Did you call my name? Wondering where I was? I see your hand stretching out looking for mine for one last wedding hands and not finding it. Alone.
Holding you close after I got to Arbor...I know it was just your mortal shell but I pray God allowed you to feel my tears,hear my sorrow and feel my last kiss. I think of this often as my faith has been broken,I do not understand how this works anymore. I am totally lost here,I wish I could tell you things were better but they are not.

One day.

I struggle with this,I talk to my therapist every month and this is my one never ending thought,I left you alone on the hardest part of our life together. You and I saw so many wonderful and not so wonderful things in our 15 years together. We overcame so much more then most people ever know and yet on the one step where we needed to be together,I wasn't there. I am so sorry,Lori. I have not the words to express how badly I hurt in missing you. We were such a great couple,such a loving couple.
  This past year has been so sad,I feel completely off balance and alone. I don't know what tomorrow will bring but I do know my love for you will always be constant no matter what or where I am.

I love you Lori,always and forever +1

Michael

Tonight I fall.....



Thank you all for staying with us,those who knew Lori and those who have gotten to know her through this blog.

The Pink Hat: Mission 4 and a disturbing business

Its 10:35 pm

   I am back....iced coffee at hand,a cool movie score ("The Deadly Spawn") on the old CD player and the cheetah is walking under my desk. Its raining outside again,we have not had a three day stretch of good warm weather as of yet here in SE Michigan. Not really complaining,not when huge EF-4 and EF-5 tornadoes are ripping through the south.
   We might not get a major warm-up anytime soon,the Great Lakes are still 26% frozen which the weather folks will affect our spring and summer,making them much cooler.
  I had to break down and get a new computer,the old one was running Windows XP and when Microsoft quit supporting it,I tried to have it upgraded at Polygon Computer but to no avail...Mr. Li said I would need a new computer so taking a cue from my friend and duelist extraordinaire,Chris...I got a new Dell for a pretty good price. Mr. Li and I got uploaded and put in a new security suite and I was able to come home in a couple of hours and go online 10 minutes later.
   The machine is very fast but I do not like the keyboard,it looks and feels cheap but I had no choice to use it as Dell won't let me use my old HP keyboard.
  Its May...and I have been really struggling as of late. It will be one year on the 20th since my Lori left. My heart is very heavy as it has been for most of the past four years. I can't help but look back at where we were last year,I get very emotional thinking about this. Watching Lori fade a little more each day in body but her spirit was still very bright. I hold on to that very tightly...I am now ready to take my video camera in and have the two videos I have been saving downloaded and copied. I was watching a documentary on 9/11 about the folks who called home while being trapped. For too many of them,that call is the ONLY thing they have recorded with their voices,they have tons of pictures but no recorded videos. Those folks hold on to that because you will lose the memory of the voices. As much as I find it painful to see and hear Lori in her condition,it would be that much more painful NOT to have it.


   The Pink Hat mission in April was a lot of fun...the theme was Bake For a Stranger and I baked three cakes for my co-workers and brought them on Easter Sunday. I think my co-workers were pretty amazed that I actually did this but that was the idea! To bake for a stranger,neighbor,co-worker,church group,etc.
  I baked 2 chocolate and one white,what I forgot was maybe bringing along some ice cold milk as well.
While the turnout was very light in my group,the idea of doing a Pink Hat mission is getting a little better.
My good friend Monte in Arizona has reached out and bought lunch for three different strangers in the past month.

    Lori's best friend Deb sent me the following:

I didn't bake but hopefully this counts for the mission. On Saturday, I visited my mom's neighbors bearing not baked goods, but an Easter Lily. Mr. G. is 103 years old and is lovingly cared for by his wife. They are so inspiring. Mr. G. is brilliant. He has a love for art (and is an artist, himself), music, sailing, nature, architecture, to name a few things. I love to listen to his stories about his life experiences. Mrs. G. is so loving and nuturing. She moved here from Poland and is doing so well with her English and adjusting to life in America. They were so thankful for my visit but I am the one who is truly blessed for knowing them.



Why of course it counts! Doing random acts of kindness is what its all about. It doesn't matter what act you do,just that you do something.
The last thing I expected from my mission was to be someone who benefitted from it myself! But that is what happened when our Alana decided to bake up 6 totally awesome carrot cake cupcakes and drop them off at my doorstep! As I have written before,Alana's mom baked our wedding cake and is a world class bakery chef (that is fact,not hyperbole). It seems like Alana has been passed down some of those genes because those cupcakes were just amazing!

  May 6th will mark the second year since Amy Rauch Neilson left us as well. Last year was the first time I talked to her husband Don. My journalist friend Amy recommended that I do and so one night,we talked....for three hours. I told him that Lori was dying and he listened and talked about how lucky we were to have been blessed with such amazing women. We talked like old friends and finally we said good night and I went to check on Lori.
   The following morning when I went on Facebook,I saw Don had left a note on his wall...it was the first year of Amy's passing and he had spent three hours with me,comforting me....in the darkest of days,he shone brightly and showed incredible compassion.
  Funny thing about cancer or any other major illness...when people find out about it,many times they fall to wayside,they don't know how or what to say to the affected person or the family. They are paralyzed by indecision or doubt and sometimes just plain afraid.
  Others are different,they rush into the breech and offer support and love in the ways they are able. Car rides,babysitting,food,chemo buddies,etc. They do this with a pure heart and with no strings attached.
  But recently I stumbled through Twitter a woman who looks at this in a different light. She has decided to make a living off other's pain and heartbreak. Her name is Tambre and she has a business in where she will offer coaching and support tools,for a price. Being she is based in L.A.,I am sure its a nice hefty price at that.
  As I walked through her mostly New Age website and all the things she can offer a caregiver for a price,the more angry I got. The sheer greed and evilness of actually charging people for coping,support and whatever else she is offering is just disgusting. Patients and their families are already by being overwhelmed by costs,different levels of suffering and pain. Caregivers are stressed enough already,many are the only ones helping their loved ones.
  To charge what should be offered as a simple kindness....I have two therapists who help me,Becka from Arbor Hospice who has stayed with me in the first year. Generally that is the hospice offers before the person who has lost a loved one transitions to a group or another stage in the coping process. I,myself,will go see Debbie from our church. But Becka reached out and volunteered to stay with me from a few more months. Neither Arbor nor St. Thomas has ever sent me a bill,asked me for money. None of our friends has done that...when I shared this person and what she was doing with others who have lost a loved one to cancer,they too,were appalled.  But you tell me,am I overreacting? Should anyone profit off someone's tragedy? Or is it capitalism at its finest?

  5 May
4: 21 pm

Yep,this is going to be a "newsy" entry. I call these blogs rolling entries because I write them when I get the time to do so. Thanks for staying with me so far.

Okay,my next installment of "8 Questions with....." will be ready to run. I am interviewing film maker Tim Teets of o73 Films,a one man film studio. I ran across Tim's FB page and was struck by his DIY spirit and his dream of making movies. I really think you will be impressed as well...I will be working on cleaning this up tomorrow.
  Also,I also have two guest blogs coming up....a very talented English writer Sophie Bowns will be sharing her creative mind with a chapter of a new story she is writing and Susan Smiley will be back yet again with the sequel to the story of Oliver,the cat who escaped death twice before finding a forever home.
  I like to thank all the new readers and especially the comments,I am so tickled by that....it makes writing all that more enjoyable.

The Pink Hat Mission 5 has gotten off to a late start as far as pushing it goes. But if you like to help out,there are two ways to do so....

One is donate blood to the American Red Cross,I did this as my first mission but because its a gift that always is in need,I will be repeating it in May. Cancer patients go through a lot of transfusions so the blood is always welcomed.



I like to thank Kenny Sinatra for donating blood this month....it really is a great feeling!


Another way is to help my friend Gary Avila's daughter Isabella meet her goal for the Relay for Life event 31 May. Gary lost his wife to leukemia a few years back and this is his way of honoring her.
 She is very close to her goal so if the idea of donating blood isn't your cup of tea,maybe a small donation to Isabella will be. Below is the link to her page.
Donate to Team Dragonfly here.





I am going to end this for now. Thank you for reading and I will be back later on this week.

If you are on Twitter,follow me @Jinzo_2400


Shout outs:

Gary - Where do I send my bill to?
Sydney- embrace your talent and run with it
Angie and Kim- keeping me grounded
Donald and Theo - I am with you tomorrow and everyday. 
Charles Fox - I will see if I can maintain the insanity of your group.
Chris Alexander - Starlog is back??? You are the MAN!
Debbie Rochon - sorry I missed you.
Michelle (ND) - You can stop with the S word now,unless it starts with Su!
Thank you for all the comments and traffic! 

Clinical Trials Now Accessible to More Patients - guest blog by Heather Millar

It's 1:04 pm

Still no computer but in the meantime,I found this while surfing ,a blog written by Heather Millar about cancer patients being able to get into clinical trials much more quickly. The process is a slow one and it shouldn't be. Thanks to Dr. Stein,maybe this will start to change.


Written by Heather Millar.

For many cancer patients, maybe even the majority, clinical trials can seem completely out of reach. Unless you’re getting treatment in a big academic hospital, it can be hassle not only to find a clinical trial, but to get the “go ahead” to enroll in that trial. It can mean online research, forms, more tests, and travel to a research site. It can often take months to find a trial and get enrolled. And patients with disease that has spread—those for whom research most needs to be done—often don’t have that kind of energy or time.

But what if you could get in a clinical trial within just a couple of weeks – wherever you are in the country?

That’s the goal with a new research model being used by the Swiss pharmaceutical giant Novartis. The idea for a more patient-friendly approach came a couple years ago, when Novartis’ Steven Stein, MD, was talking with a fellow oncologist who practices in Florida. The friend was ranting about how difficult he found it to get his patients enrolled in clinical trials.

The conversation stuck with Stein, and he remembers thinking that there had to be a better way. The result, 2 years later, is the SIGNATURE trial, launched 10 months ago. Novartis is testing five potential drugs in this trial, and expects to increase that number to 10 by midsummer. About 100 patients all over the country have participated so far, and the company also expects those numbers to grow quickly.

Many companies, not just Novartis, are trying to figure out how to reach a broader range of patients. Patient recruitment has long been a bottleneck in medical research. Of the tens of thousands of trials being run in the United States each year, as many as 80 percent are delayed because scientists can’t find enough study subjects.

Many companies are experimenting with using social media to reach out to patients. For instance, the biotech giant Genentech recently announced a partnership with the patient information-sharing site Patients Like Me. Merck, and three other companies who prefer to remain anonymous, have partnered with the patient support group site Inspire.

Why? Because more data from more people is the only way their research will result in true “personalized medicine.” Expect to see more collaborations like this, and soon.

Drug companies are fairly secretive about new research models until they’re ready to announce them, so it’s impossible to know what other innovations may be in store. But Novartis may be the first company to try to bring the research “protocol” to patients directly wherever they are, and at the same time, to also target patients with specific genetic markers in their tumors.

Instead of requiring patients to travel to the study site, the Novartis trial brings the research to wherever the patients are, getting test results from approved local labs, then sending the experimental drugs to the place where the patient is being treated. Instead of focusing on cancers of a particular origin, the trial focuses on cancers of a specific set of particular genetic “signatures,” also called “mutations” or changes. These specific mutations have been found to drive the growth of many cancers, and Novartis has experimental drug agents that target them.

“We’re geography-agnostic, patients can call from anywhere,” Stein explains. “All you need is a potential genetic make-up, regardless of the kind of cancer you have.”

Interested? First you need to have your tumor genetically analyzed. (This is something that I think all cancer patients should do! That’s where the science is going, so ask your doctor about it.) You and your doctor can find more information at the SIGNATUREwebsite, where you can also find a number to call. If you qualify, Stein says, the time from first phone call to receiving the experimental drug is 2 weeks, sometimes 3.

SIGNATURE is one of dozens, even hundreds, of new research models being tried out by scientists around the world. You can find a good overview of what’s going on here. Experts say it’s likely that other companies will now follow Novartis’ lead, leading to a shift toward more patient-friendly processes in future research.

As we learn more and more about varied genetic profiles of cancer, researchers need more and more data. That data has to come from us, the patients, so get involved! You’ll probably help yourself, and who knows, you may also help the world.

Writing Challenge - day 11 - Issues,we have issues

It's 11: 21 pm

Day 11 of my writing challenge,hope this works...

Writing 

Writing Challenge day 8 - Wednesday

It's  8:25 am

What is it like finding out that your soulmate is this sick?

Wednesday......

April 9, 2011 at 1:10am

 Its 12:26 am
Back home tonight....it was a long day. My armor showed its first cracks....
Had a good day today...got to the hospital and went into my wife's room...except she isn't there...she is out motoring on her own,taking a walk about around her floor. She comes back in and we catch up on her night....progress is being made at a rapid pace...her MS (morphine) drip is pulled,her last two EKG tabs are pulled and she is able to take a shower.
   That said,that is what is done....afterwards in her own PJs and feeling refreshed,her spirits are much improved. The diet is upgraded slightly to toast and popsicles w/lukewarm tea and orange juice.
   The day started out cloudy and rainy but it cleared up in time to watch the Tiger's Opening Day game against the Royals.
We enjoyed watching the pre-game ceremonies and seeing the sell-out crowd cheering away. The game itself was okay,the Tigers put a 4 spot on the board in the 1st inning to go up 4-0. At the same time the Yankees are getting drilled by Boston...makes for a long afternoon indeed.
   With the Tigers ahead,my wife dozes off for a few...her face is peaceful....
3:30 PM....the nursing staff changes over. We meet Diana,our NA for the evening...the Tigers are still winning and the Yanks are still losing,Hughes is getting bombed.
  My wife places a order for toast and a popsicle at 5 pm. We finish watching the Tigers win,5-2,a patient cheered when the final out was made.
5:30 pm....no toast
5:45 pm....no toast
6:00 pm....the doctors make rounds,see how well my wife is recovering and upgrade her meal to solid food. As we are waiting for a menu,we make another lap around the floor....
6:25 pm.....we come back to find......a single slice of toast.
6:30 PM....We meet Jaime,my wife's RN for the night,he places a fish dinner order for her...and when we asked about bladder lift,he brings up her treatment profile and tells us exactly what took place on Tuesday morning.
  As he is explaining it,he mentions something that finally cracked my armor...something Dr. Johnston didn't tell us. They found cancer very close to the colon...and it hits me....what was originally a stage 2 cancer now has been elevated...I can taste the fear for the first time and I'm not liking this at all...
The kitchen rolls in my wife's dinner...meat loaf! Since she is observing Lent,she doesn't eat meat on Fridays plus she had ordered fish....so the order is regiven and at 7:30,I head on home...I have to hurry because I can feel my tears coming,she can't see me cry,can she? We kiss and I head out...get my parking stamped and lose it in hallway. First time since this whole fucking hell has started in September and I am losing it....I ask,are we in a stage 3 arena now? The nurses don't but say Jaime might know....we walk down the hall and I want an honest answer...he can't say for sure but does admit this cancer has caught everyone by surprise with its speed. But as far as stage 3 goes,we have to wait for Wednesday to see what the pathology says. What we don't want to see is this:
http://en.wikipedia.org/wiki/Uterine_papillary_serous_carcinoma
As you can see,this is a very aggressive form of cancer and it can invade other parts of the body,including the bowels.
And this is what is really bothering me....how fast it progressed from a self-contained uterine cancer with a 87% cure rate to the unknown.
I'm going to offer once again my bone marrow...there has to be a way to slow this beast down...
All eyes are on Wednesday.
keep us in your prayers.

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