Tuesday

have not heard from the docs in Indy yet regarding testing they're setting up. It could take a bit because they're trying to coordinate multiple tests on the same day.

Have been spending time setting up some type of routine and schedule again -- the newest normal. My in-home therapy will end soon so I have to be able to do more for myself. Also, David can move back to Indy as soon as 8/1 even though he won't start school yet. It will give him a chance to find a job before all of the other students start to move back.

We are registering Cody for school tomorrow. he is looking forward to returning to school; he loves to keep busy with friends. He took a class over the summer and improved his GPA. Plus, he moved from 21 in the class to 19 in the class (or something close).

Tommy and some teammates were at open gym this afternoon when he went up to shoot. His teammate grabbed and ripped his bicep tendon. Tom will have an MRI tomorrow and then they'll figure out what to do. The season starts in November. Tommy said one of the football players did the same thing and was out for 5 months. The injury happened on his shooting arm.

Susan Richter, long time friend from the Museum Guild, called the other day and told me that a friend of her sons broke his neck diving in his pool. All of the boys were good swimmers from the Delta team while they were in H.S. I believe his name is Timmy Patterson. His Mom, Margie, cycles and hangs out with Susan. When I go through a hard day, or get down about being in this situation, I think about Timmy and imagine how hard his therapy must be. Please pray for him and make him strong. Please do for him what you have done and continue to do for me.

Dr. Spahr appointment here in Muncie. He is giving me a shot periodically to increae my red blood cells so I will have more energy.

If anyone wants to help with a some filing that I have, I could use another. I would tell you what folder to locate item and you would put it in the existing file or create a new file. Call me if you want to help.

Love you all,
Lennet.

Meeting the Transplant Surgeon

Good thing the sun was shining. We both overslept, but had allowed enough time to make it down there anyway. CT SCan went well at 9:15 and then we went to meet Dr. Maluccio (the one we met last time) at 11:30. She poked her head in and told us she would page Dr. Vianni (the transplant surgeon). about 2 or 3 hours later, Dr. Vianna appeared along with 2 other doctors (interns, perhaps?) and said he had not yet looked at the scan from this a.m.; he had been in surgery for the last 2 days. We talked about my condition and what shape my liver was currently in. He said he would not even be able to get me on the list if I wasn't able to live longer and much stronger/better after the surgery. the surgery itself is the hardest thing the body would go through. 85% success rate. He's never lost anyone on the table, but one really, really sick guy only lived 4 months and they won't do the surgery to only get 4 months. I asked how this surgery compares with the Wipple Procedure that I had done in December of 1995 and he said this one is 100 times harder.

Next step is to bring me in for a full day or two and do whole days full of tests to make sure my heart and lungs are strong enough to do the surgery. I continue to remain optimistic. The vein has some blockage, but he thinks he can work on it. The good news is I'm still in the running. If I decide, when we're all done with testing, that it's too much, I can always change my mind.

I tried to wing it,but had to take pain bills to get through the day so I keep falling asleep trying to write this. I can't proof it for very long so I'm sure there are misspellingss and confusing areas...thanks for being patient!

We didn't get the info today that I thought we would, but we got plenty of new information that will take me a while to ponder. There are things i will continue to need as we move through these next steps. The best way to find out what you can do or how you can help is just to ask me. Thanks for everything you've already done and continue to do. Be well. I love you all. I am sooooo lucky to have such a huge support group. Please continue to pray -- for strength for me as I move through these difficult times, as I am tested and as I am faced with new decisions. Pray that God will show me the right answers.

Love,
Lenette


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Meeting the Transpka]]]

Good Day

It was a good day! I have new complications and once again, a new normal, but I seem to be moving through it OK. I have extreme seeping and bleeding on my legs so out of nowhere, a very small area on my legs will just run blood -- what a mess. Yesterday, I bandaged most areas with gauze, but then I taped the bandages on and when I had to take the tape off, it created new rough areas. The nurse said I should get these net-type things to wrap around my legs so I can keep the gauze in place. OK, that's not the good part.
I went for my first outpatient parocentisis (sp?) and they drained 5 liters off. They only like to do 4 because it messes with your kidneys and blood pressure and really messes with the fluid in your system, but it kept running until 5 and then just quit so we stopped also. We'll keep it at 5 and call it a day. There's a woman named Jill who does it and that's what she does all day. She's really bubbly and has her hair in a pony tail and is always smiling. I just love people like that -- makes you want to work with her. Then, I waited 1/2 hour, Mary Foster picked me up and off I went, 12 1/2 lbs. lighter!! I wish dieting was was that easy@

And...when I got home...Tommy was there. He got home yesterday and since Tom is out of town with Zachary, he is spending time with us. He and Dave went for a bike ride last night on the Greenway. Today, we all hung out and just chilled together. Can't tell you how nice it is to walk in my house and see all 3 boys there. Priceless!

Tomorrow my cousin, Debbie Doucet, is coming over. She called tonight. She is at a hotel from Chicago and will be driving over around 10:00 tomorrow morning just so we can visit all day. I haven't seen her in years.

Then, on FRiday, we go back to IU Med Center. The CT Scan is scheduled for 10:00 a.m., the meeting with Dr. Maluccio and Dr. Rodrigoo Vianni is scheduled for 12:00.
I know many, many of you are praying and I know God is listening. I know God is lislining.

Thanks for Chris Jenkins, Maureen Mann and Nancy Barry for the Lou Malnati's. I will share with Chris and Cathy...oh yes, and the boys. It's always great to get a taste of home. Reminds me of the marching days.


Love to all,
Lenny, Lenette, Len

p.s. My router has been down so I could not blog.
Oh, and did I write that I was in the hospital Friday and they picked me up there?

Friday update

Woke up at 5:30 a.m. with KILLER PAIN. I could hardly move it hurt so bad. This time it was in the left of my abdomen versus my right side so I had no idea why it was hurting. Of course David, my lifesaver, happened to be just headed to bed so I texted him and he helped me up from bed. Then I fretted and rocked in pain until I figured out who to call. Dr. Adrian was not on call so Dr. Lloyd told me I needed to head to the ER. Considering the amount of pain I was in, and I had already taken a pain pill and used my pain pump, I figured he was right so we piled in the van for a trip to Ball Hospital AGAIN.

They took a blood test, xrays, etc, etc. and gave me pain drugs intravenously.
Then they moved me to ER Observation and "watched" me until Saturday at about 4:30 p.m. when I headed home. Doc said the worst that could happen was that I came back to the ER again. Boy, I sure hope not. ER Observation is a very strange place to be; they hardly communicate with you at all so you really don't know what is going on, what "the plan" is, etc. And I LOVE a plan.

I'm finally home again - still in horrendous pain, but trying to stay ahead of it by taking my pain pills on time or even a little bit early. Katherine and Bob are here from Chicago. Bob is making a platform for my lazy boy chair which we moved from the Depot to my back porch, and Katherine is making me a feast with fresh fish and raspberry sauce, corn on the ccb, fresh peaches and blueberries from the farmer's market and a appetizer with flat bread and fresh mozarella plus other oils and spices. Hungry yet? Notice no matter what happen, I always have room for food.

Prayers that I'll be able to travel to the transplant appointment.

love to all,
Len

Good News from IU

Today I received a call from Dr. Maluccio's office scheduling an appt for Friday, july 24th at 9:30. I will have a dual phase CT scan which shows the blood flow into the liver and then meet with Dr. Maluccio and Dr. Vianni, the surgeon who would actually do the transplant. This is great news because it means we are moving ahead in the direction of the transplant instead of them stopping and saying the transplant is not even possible.

WE ARE GOING TO TAKE ONE APPOINTMENT AT A TIME JUST AS WE'VE TACKLED ONE BATTLE AT A TIME WITH THE CANCER. I do not want to waste energy worrying about something that I cannot control or change. So, please practice being patient with me and we'll walk this walk together.

For those of you who are praying, and I know there are millions of you, this week we are praying that Friday we will receive good news...that the doctors will look at the CT Scan and will see good blood flow from the liver and that they can do the transplant. Then, Dr. Maluccio will get me on the tranplant list and off we go!

God answers prayers...so keep them coming.

Lenette

No News is Good News

Right? I didn't hear from Dr. Marruccio today. I had thought I might. I did get a visit from Pam Gillum who is here from Florida for a short visit. I also had an occupational therapist stop in to see what modifications I needed on the house to make it safer. Then, the "shower girl" (that's what they call her) came over and helped wash my back, moisturize my lower legs, etc. I finally got my bills mailed and filed a few things so I'm feeling like I know where things are again.

My legs are really stretched today and redder than they've been so I'm going to make this a short blog tonight. Kathy and Bob are coming in from Chicago on Friday afternoon. They're bringing us all kinds of treats from Chicago. Can't wait!!!

Love to all. Thanks for all the prayers.
Len

Visitors Welcome

You're more than welcome to come visit, although it's always best to call first so that I get to talk to everyone. I'm having a nurse, physical therapist and bath aid for the next month so that takes time on certain days, but it sure is nice to have help and not have to ask the boys. Marlene and Brian came to see me on Thursday -- gosh I miss them!!! They're here for Endurathon, but Brian now lives in North Carolina and Marlene lives in Champaign-Urbana. Today, my Uncle George and his wife, Sher, came over and brought my Mom. They are from Arizona and came to Decatur, Indiana for an overhaul on their motor home. They'll be here a few weeks, but this is probably the only time we'll see them. They have a rally next week with almost 100 motor homes. Then they're off to Canada, over to Maine and throughout the northeast. Cool life. They've had the motor home for 13 years and travel most of the year around the U.S. And then there are my friends who stop by all the time -- and bring food and help clean and go grocery shopping. Feel free to just come over and TALK. I'm trying to learn to listen more and talk less. I promise!!

We are keeping up with house cleaning, even though my standards are lower than they used to be. I still KNOW that the dishes will wait... while kids grow up and friendships are strengthened and connections to family remain strong.

And, oh, take runnning with the bulls in Spain off my bucket list. Some guy got rammed and killed by a bull. No fun! My brother, Danny, is very excited about the transplant. He wants to take me hang gliding in the worst way. Imagine the sounds of a chicken clucking...that would be MEEEEEE!

Keep in touch.
Lenette

Friday 7/10 Update

For the first year since 1988, I am missing the Muncie Endurathon this year. Cody is making some money today by helping vendors set up at the Expo. Today is registration and a sports expo where you can get some good deals on shoes, bike shorts, bike parts, etc. I started my run with Endurathon when I was pregnant with Tommy, handing out water and directing the athletes. Since then, I was Volunteer Coordinator for many years -- even managed 5,000 volunteers during the World Championships we hosted in 1996. Tom served as race director in the early nineties and I served as race director in 1998 and 1999. Two and three years ago I managed registration and last year I just hung out with Marlene and handed out plaques. It's a great time to catch up with the committee. My doctor, Dr. Adrian, has been involved just as long -- we've all raised our children volunteering so when I received an abnormal pancreas test, and didn't have a doctor, I went to Dr. Adrian and asked him what I should do. He took me on as a patient and had to be the one to show me the scan and tell me I had cancer. I still remain a Board Member, but I think it's just because no one wants to hurt my feelings.

I haven't heard from Dr. Marruccio yet. She is the liver surgeon we met with last Tuesday. She said she would call in a few days so I didn't expect to hear from her until next week, but I had hoped.

I've been doing well at home, but it takes me FOREVER to do basic needs -- getting dressed, moisturizing constantly so my skin doesn't break down, etc. so my day is definitely full. It's taken me 3 days to balance my checkbook and begin to pay bills (tomorrow yet) and I haven't opened my book since I've been home.

Thank You

How do I BEGIN to say thank you for all of the support, prayers, love, meals, shopping, care, hugs, tears, friendship, time and love? Thank you for accompanying me on this journey and for making the ride easier. I love you all and feel so humbled by all of the blessings I am receiving.

With all my love,
Lenette

Last night, I slept better than I've slept in months. Peace.

Correct Blog Address

correct blog address is lenettespage.blogspot.com

If you're using the other one (where you sign in as Angie), just start using the one above instead.

Miracles Do Happen

...and prayers are answered. We met with the Oncologist at 12:00, but didn't meet with the liver surgeon until 3:45. Couldn't update until now because of no signal. The "Reader's Digest" version is...they will begin running tests to see if all is in place to do a multi-organ transplant(stomach, liver, pancreas, intensine), rather than doing just the liver. Their approach is that there's no sense in just replacing the liver if there is still cancer left in other parts of the body or problems that will crop up later on. So, the next step is to do another scan to see if a certain vein is open and available for the transplant and then meet with the doctor who will actually do the transplant. If the vein is not available, that doesn't mean it's a STOP sign, it means the doctor will have to look at another way to work with or work around that vein.

I know it's all confusing. I am OVERWHELMED to say the least. And afraid to be too trusting, because it's too good to be true, I'm waiting for the other shoe to drop. But the doctor said, "no, we are hopeful. this looks good. We're moving forward." She will call in a few days when she knows more.

On our way to Indy...

I finished physical therapy today. Still pretty weak, but have a group of exercises I can do at home to build on. Will have to just keep at it.
They removed 4.7 liters of fluid first thing this morning. Usually they will only take 4 liters, but this doctor said to get 5 as long as my blood pressure didn't drop too much. My breathing immediately felt better and I could watch my stomach go down. My walking is a little bit easier without that much fluid. Whew! Dr. Adrian is going to set it up so that I can do these fluid drains outpatient from now on. The nurse said that some people come in as often as once a week to get drained so that's more promising for me -- knowing I can get drained without time in the hospital. And it only takes a couple of hours.
I have so many mixed feelings about tomorrow. I got to some low, scary moments this weekend and I don't hang out in those places very well. So today I worked all day on getting to my happy, positive place tomorrow so that I can take whatever news I receive and not fall apart.
Pastor Elaina came and brought me communion and we prayed together. Mostly we prayed that I would qualify for a transplant, but if I don't, that God shows me a different direction. I know all of you are praying for me and I thank you. Please pray for Melodee also as she hears the news - help us to remember everything they say (we're taping it)and help us to deal with the news, whether good or bad.

I will probably not be making phone calls tomorrow because there are too many people to call. Mel or I will try to post after the appointment as soon as we can. Then, I GO HOME!!! after two weeks and for the first time, I will not have to work. I can focus on myself, my boys, relaxing, and summer sunshine. I am so looking forward to sitting on my back porch and just hanging out.
While here, I have made arrangements for a visiting nurse service to come to the house and help me with various things that I can't do for myself. And I have the info about Careline (I've fallen and I can't get up)so I don't end up on the floor with no one home and have no one to help me get up. These arrangements will relieve me quite a bit so I will have to rely on the boys less.
I will let you know if meals or anything else is needed. many of you have offered and when the need is there, I will let you know.
Thanks for helping me stay positive. I will need that positive attitude as I move forward down this path called life.

Love to all,
Lenette

Saturday afternoon

VISITORS WELCOME ON SUNDAY

For the first day since I've been here, I should have a quiet day wiht no therapy or procedures, etc. so feel free to come by and catch up.

I am scheduled to be released on Tuesday morning in time to make a 12:00 appt at IU to discuss possibilities of a liver transplant. Melodee will take me unless I need a different vehicle, and if I do, Dr. Adrian will arrange for it.

On Monday, I will do some physical therapy and then a periocentisis(sp?) to do another drain on my fluid and squeeze me out before I go home. I started to take on fluid again a couple of days ago and my legs are stretched to max plus red. My abdomen is HUGE again so it seems like within 2 weeks I refill again and am so big I can only waddle. And the fluid presses my organs all together so it makes it hard to breathe. And I've lost soooooooo much strength.

I love you all. Your strength and God's love gives me the ability to get through everyday.

Lenette

July 3rd/4th

Happy Independence Day !!! ...which is what I'm looking forward to ... independence.
Spent most of the last two days either in rehab (physical, occupational, etc.) just trying to gain strength. Walking, up ramps, down ramps, leg lifts, balance exercies, bicycles for endurance, etc. Met with case manager and it looks like if I take advantage of home health care upon discharge, it will be covered by insurance so we'll line up a plan on Monday. Also am getting a careline necklace ("I've fallen and I can't get up) in case I fall again and the reds are not around or I don't have my cell on me.
Cody brought Grandma to see me today so it was nice to see Mom again afer a couple of weeks.
Tommy is in with another team member for the weekend so I saw him last night (Thursday). He even snuggled in my bed with me (OK, he laid next to me in bed, but that means snuggling when you are his age.

love to all,
Lenette




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1st Day in Rehab

We worked in rehab today. Morning was spent doing evaluation of where I was, what I could do. Everyone eats lunch together down in separate lunchroom. Afternoon spent one hour just doing repetitive movements, strengthening arm muscles, leg muscles, etc. It was hard because we worked on pushing myself up from wheelchair and it's really hard for me to do that. I did five repititions and by the end, I was really tired, but felt good that I was making progress. Tomorrow I'm sure we will do more repitions. While we add more reps, I will get more independent and that's what I went to rehab. The boys are fine with me being gone; they want me to be strong and independent. Gosh, they are great kids!!!
My friend, Jill, is in from Kansas City today through early Saturday. She will bring my Mom to visit tomorrow evening and sit with me.
On Friday, Holly & Zach are coning to visit either in the evening or during my therapy sessions. Either way is is fine with me.
Love to all. I will continue to pray...please do the same.
Love,
Le

Rough Day

Tuesday was a rough day. It started at 7 a.m. with my falling down in my room. I had been up tidying, just wiping down the tray table. I backed up my leg to move away from the wall and stepped on the pole that holds my meds. I lost my footing and no matter how I stepped, I couldn't get my balance. So down I went on my butt...hitting my head and bouncing off the floor. The good part is, I landed right next to the nurse call button. So I pressed the call button and said, "I've fallen and can't get up." No fewer than seven nurses came in, including a big burly male nurse, who helped me up. It was a terrible way to the start day. It got everyone frazzled. But I did learn that my insurance appproved my moving to the rehab floor. So around 4 o'clock, I moved to the fourth floor. I'm now in Room
4205. After my evaluation last night, they estimate that I'll be in rehab for 7 to 10 days. Unfortunately, this is a lot longer than I had anticipated. Overall, yesterday was just an emotional day. I was emotional. I moved out of my comfort zone in oncology. I'm now shairing a room that is less convenient and private. And I have new nurses. But I met a great new nurse who is native of Chicago. She grew up around Wrigley Field. Her name is Lisa. My schedule now is that I will do rehab in the a.m with another session in the afternoon. Visitors are welcome to come and go to rehab with me if they want. If not, I'm done by 4 p.m. each day, and visitors are welcome to visit any day following rehab.