Da-da Monday, Monday (isn't that a song?)

OK, it's not Michael Jackson...in fact, I think it's by the MaMa's and the Papa's. Do you know that Michael and I are both the same age? And yet, he looked so much younger! Maybe it was the makeup.

I officially talked with my board president and all is set to stay home and take care of myself. I am so grateful I can't stop crying. I am so lucky!!

Rehabilitation stopped by today. They are trying to make sure my insurance will cover me to work 4 hours a day on getting my strength back. If the insurance won't cover the rehab at that level, there are lesser levels they can try so one way or the other, i should be able to stay and build myself up. That way when I get home, I'll be self-sufficient.

I got a good night sleep last night and that makes all the difference. I was stronger today. I still only got about 6 hours total, but there were more uninterrupted periods of time.

I'm happy today. I still have many challenges to overcome, but I have had a lot of 'wonderful' during the last day or two.

Love you all, and thank you for sharing your gifts.

Lenette

Liver Transplant Anyone? (continued)

Sorry...I screwed something up and couldn't edit the last one or complete it...

I have been so worried and stressed about making sure that the Greenway was running well and making sure grant deadlines were met and that I stayed in the loop with everything and that I was working hard enough that I was constantly stressed and doing a bad job of juggling. I knew I had to be responsible for bringing home a paycheck and keeping my health insurance. When I went to the hospital on Tuesday and two doctors told me that I could have easily bled to death had I not made it there when I did, I called work and told them I would not be working the rest of the week. Guilty as I felt, I knew I had to put me at the top of the list and get well. And when my Board heard that I was back in the hospital, they said the same thing...before they even knew what I was thinking. I need to take care of me and my health so that I could get strong, go through a successful transplant and come back to work again.
And we definitely have the team to run the Greenway. They are so supportive and work so hard that I feel very comfortable leaving it all in their hands. And they each really care about and support me. It is so wonderful to work with people who truly care about me. And, of course, I can't say enough about having management that is so human and caring that they are making sure I come first and knowing and trusting that this is the proper course of action. Not just a job!!!
To say that I'm feeling hopeful and optimistic is an understatement. But you all should know that the transplant is not a done deal. I have not even met for the first consultation yet. It could turn out that I am not a candidate, but that's not the impression that I got...the doctors in Indy reviewed the pet scan with a group of multi-specialty doctors there and said that it looks like I would qualify.
Please pray that the transplant is a go...and that I'm strong enough to sail through the procedure...and that the new liver will be compatible...and that I will live to rock my grandbabies to sleep. God is guiding my ship and He knows that I'm not done here. I love you all for your support and the strength it gives me.

Peace,
Lenette

Liver Transplant Anyone?

Dr. G just left the room. He's the doctor that did the procedure on my esophagus the other day. He asked about the appointment regarding the liver transplant and I told him we'd have to reschedule since we missed the appt on Tuesday. He mentioned that I have the same cancer as Steve Jobs from Apple Computer and I told him . Steve Jobs had a transplant two months ago and is doing fine. But catch this -- there's an 85% success rate with liver transplants!!! How great is that! And livers are not as difficult to match as kidneys. Also, there are more kidneys available in Kentucky than most states, but Indiana has a fair amount also. Great news, huh?
AND THEN...more good news. The wonderful, caring, loving people who I work for believe it is in my best interest to go on leave and take care of my health so I am officially grounded until further notice. This will give me the time and energy to work on getting/staying well, to make my body and mind strong enough to get through the transplant and to spend time with my boys, family and friends and enjoy life, rather than stress through it.

Saturday Morning

Good morning! It's 4:45 a.m. Are you up yet? Well, you know hospital living...I'm up! Cody participated in relay for life all night so I got to participate via text messaging...the next best thing to being there. Missed him, though. We always have fun at that event...staying up all night, eating junk food and raising money for cancer research. The bad thing (if you can call it that) is that the monies go toward American Cancer Society which does fund cancer research nationally, but there is not a local presence here. Instead, I have benefited greatly from Little Red Door - Cancer Research of Delaware County, and they've given me many free items - my leather lift chair, a raised toilet seat, free Carnation Instant Breakfast packets (to add protein to my diet) and other things that I would otherwise have to pay for. Great organization and they have many more items that could benefit me down the road. So, if you're looking for an organization to make a donation, please check them out.

I also talked to the nurse this morning and she said there's something in the chart from the doc that says I might get to move to one of the other floors on Monday or Tuesday so I can extend my stay and continue to build my strength. That's an answer to prayers right now. I need to be able to function on my own at home. The added strength would keep me in the fight. Then we get a new appt in Indy to discuss the transplant option and move on from there. HOPE again and FAITH that God will provide a new liver.

Never thought I'd like liver. Tracey loves liver...usually with bacon. But I never really liked the taste. Now it's looking like liver is my most favorite organ!!

Breakfast is still pretty far away. I've lost a lot of things from cancer, but NOT my appetite! Right now,I'm thinking of a veggie oomelet with peppers, onions, mushrooms and mozarella cheese across the top. Mmmmm Mmmmmm Sooooooooo good! Oh, yeah, and shredded hash browns with sausage on the side, OJ, maybe a little hot tea. or..blueberry crepes from Eva's Pancake House along with bacon or sausage. Or later for lunch, a nice BLT sandwish with nice, hot french fries (bad for the diet). Can you tell I'm hungry??? LOL at myself!!

I'll sign off for now. As you can tell, my spirits are soaring again this morning. I've got a lot of life left in me. "And I will not go gently into that good night..."

Love you all,
Lenette

p.s. David mentioned last night that they have a wall of dishes piling up on the sink...plus a few days of laundry. I know the boys will clean and get it done before I get home, but it sure would make their lives easier if they had some help. In fact, if any of you enjoys cleaning, the whole house could use a good once-over from dusting to vaccuuming, washing floors, etc. I know it's a lot to ask, but we all know how good it feels to live in a clean house. Please don't feel obligated, but I know quite a few of you have asked how to help the boys. And some of you have even mentioned that you like cleaning!!

David's email is davethemullet@gmail.com and cody's is crazycody@gmail.com. You can set it up with them.

Weekend Visitors

I'll write more tomorrow, but I wanted to invite anyone to come visit over the weekend if you're so inclined. I will continue in the hospital until Sunday or Monday. then,we're going to try to drain more fluid before I come home. At this point, I can't get out of bed by myself so I'm not sure how i can go home. One day at a time.

Hello to All

Hello to everyone and thank you for your love and prayers. They really do strengthen my day. What a day in the news -- Farah Fawcett this morning and then Michael Jackson in the afternoon. No matter what we thought of each of them, each had their individual lives with all of the challenges that we each face here on Earth. We cannot know their journey so let's not judge their choices.

I didn't realize how serious my "episode" was until I had a couple of doctors tell me how close I had come to bleeding out. Realizing that my life could have ended that quickly is pretty profound. I remain so aware of each of my days as I travel this road and I ask you to remember that this could easily be your life also. Seize the day. There are no do-overs. Don't waste time on trivial things. BE PRESENT TO THE MOMENT and make each moment count. I question how well I really do that versus just talking about it...

And how 'bout my new poster boy -- Steve Jobs!! I'm planning to follow in his footsteps and make the transplant a reality. Not sure why we were detoured, but we'll get to Indy and make this a reality!!!! He has the exact kind of cancer that I have and his liver transplant is progressing well.

I love all of you. I thank you for providing such a strong support system. I thank God for your gifts and your willingness to share them with me and my boys.

Not sure when I'll go home. I don't have enough energy to get out of bed or get up from a chair yet. Nurse says my electrolytes could cause that...or too much potassium in my system today, etc. I'll ask the Doc more tomorrow.

I'm going to rest now. You are welcome to check in tomorrow, but if I don't answer, it just means I'm trying to rest, sleep, read. I know you are -- you've shown me that ten times over.

Be well,
Lenette

update

Lenette underwent the periocentisis procedure this morning and they drained quite a bit of fluid. She is doing fine and eager to sleep and rest today.

David spent the night in the hospital last night as well. His asthma was giving him fits so they wanted him to be monitored. He is home and taking it easy. He has his cell, laptop, and TV; so he pretty much has all he needs! :)

Len is very thankful for all your thoughts and prayers. Please keep it up. This is what she needs right now. PLease know that what you are doing is enough! It may not seem like it for now, but it truly is.

Melodee

a new day

Well, after a scary day like yesterday, today may seem like a walk in the park. Lenette is recovering nicely still in ICU. She will be moved to oncology today as soon as a bed opens up.

Dr. Adrian says there is no reason to think that the ruptured vein episode will happen again, but he did give her some things to watch for. The biggest thing is that Lenette knows her body and she knew when to ask for help. She is a very smart lady!

Cody spent the night with her and David is at the hospital now. The boys are doing a great job keeping her company!

Dr. Adrian says that today is a day of rest, get her transferred to oncology and then tomorrow she will have the periocentisis (removal of the fluid from her her belly).

Please continue to lift Lenette in prayer today as I know you all are. Specifically, pray that they can get on top of the pain that she is in. She can handle so very much, but the pain really gets her down. Also pray that her esophagus will heal adequately and that no more ruptures will occur. Please pray for David as he is struggling with his asthma; this is always a concern for Lenette.
And pray that peace will surround her today so that she will be completely rested for tomorrows procedure. And thanksgiving to our wonderful God for putting Lenette in the right place at the right time yesterday. That previously scheduled trip to Indy might have proven fatal had we been on the road. I continue to be amazed at His ultimate wisdom!!

Lenette asks that she have no visitors today and that phone calls be saved for another day. She knows that you are all out there praying and lifting her up; that is the best thing we can do for her today. She is where she needs to be.

Melodee

change of plan on June 23, 2009

This is Melodee. I am updating for Lenette. She was up in the night...so much pain and no rest. She was nauseous all night and unable to keep anything down. We called Dr. Adrian early this morning and he sent her to the hospital. She is so disappointed that she couldn't make it to Indy for her appointment,but she was very ready to be at Ball where she is taken care of and monitored. She had a procedure in which it was discovered that she had developed varicose veins in her esophagus. These had ruptured and were bleeding. The doctor repaired this with bands. Because of this procedure she has been admitted to ICU. She said she wanted to experience the new "South Tower" so this was the ticket!! She is to be transferred to oncology tomorrow.
David has been here all day which is so comforting for Lenette and Cody will be with her tonight. Truly that is her best medicine!

We will follow up on the transplant appointment when she is able to travel. God has a plan and she is trusting in that promise.

I think the best thing for Len right now is rest. If you could just trust for now and pray...that will be the greatest gift you can give her at this time. Feel free to check the blog for updates.

optimism and hope

We had refocused our approach to getting rid of the fluid. We are attempting to direct it toward the lymph nodes and take it out that way so ever since last Friday, I've been doing a series of massages, compression stockings and deep breathing. I was gung ho! Thoroughly believed. Hope was back. I had a new direction. Wahoo!!!

So I worked hard this week, making sure I did everything religiously, faithfully. And I prayed like crazy and asked for God's help. And on Friday, I called physical therapy to ask if I should be seeing some change/movement. Rather, I had gained a little bit of weight and was struggling to breathe everyday, with my organs pushing against each other and no comfortable position to be in. I now weigh what I did when I delivered my 3 boys and really look like I'm 9 months pregnant. Becky said no, I should be seeing progress by now and it looked like my liver was so shot that this wasn't working now either.

I was so disappointed and I think I'm still in denial because I feel like that was my last chance. No more tricks up our sleeves. So I keep massaging and breathing and eating protein and drinking protein drinks and trying to coax my body to absorb the protein.

On Tuesday, I go to IU Med Ctr to meet with my previous oncologist and another surgeon to talk about whether or not a liver transplant is even an option. At first, I wasn't sure I had it in me to go through something that big...and my body may not be...but right now it's all I have so I'm going to listen and learn and see what we can do to make it happen.

And every Thursday now, I go to Ball Hospital to get a Procrit shot that will help my body produce more red blood cells. That will give me more energy.

I'm continuing to pray, to stay positive and to see friends. You give me strength...you help me get chores done so I don't worry about them or try to overdo it. You make me laugh and you spend time just sharing your life with me.

Please pray with me...stay positive with me...and make me laugh. Be well and take care of yourself.

Lenette

Did I Scare You?

I got quite a few calls after my last blog. So sorry. I didn't mean to scare you guys; I just needed a place to vent / share / feel / cry. Cody and I had a heartfelt talk last night and he apologized for leaving me alone. I told him how scared I was all of a sudden and how that was a change for now and he understood. He crawled onto the bed with me and we just hugged for a long time (for a 17 year old). I hate to cry in front of them, but I couldn't help it and it helped him understand where I was.

The reds have been SO GOOD about caring for me and doing things for me multiple times everyday that I am so lucky!! So please don't say anything to them. They take my cues...and sometimes I don't even know how I feel until I get down in the mud and FEEL it.

Keep those prayers coming. And special thanks to Pastor Alaina Salmon and Pastor James Hilleson. They have prayed and prayed and prayed with me and their words have brought comfort and peace to me and kept God close by my side.

Lenette

Good Will Hunting

"The bad things in life remind us of the good things we have not been paying attention to."
Good Will Hunting


I know many of you worried about me last week when I went to the hospital again. But now that I'm out, I see the difference between the hospital and home. the hospital provides a sanctuary where I can be taken care 24 hours a day. There is always a nurse to help me do this or that...and she/he is always eager to do whatever I need done. When I wake up in the middle of the night, there is someone there to talk to, even to listen to my dreams. One night, I was convinced that something had happened and as I told Allison, we both realized I had dreamt it. She was like a mother putting a small child back to sleep in the way she made me feel unrushed and waited "I'm not going anywhere" until I was done.

Last night, David stayed in Goshen with a friend. Cody stayed with his friend. I was going to be alone from 6 p.m. until this morning...and inside, I was terrified. Not that I've ever woken the boys in the night, not that I was afraid I would fall or anything, I was just afraid. I'm afraid to be so sick that I can't get out of bed to use the bathroom. I'm afraid of being a burden to ANYONE. I'm afraid to live like this, but I'm more afraid that I will linger in pain for too long.

When all is said and done, I am an optimist and I try to be present in the moment. I'm trying not to worry about yesterday or fret about tomorrow. But every once in a while, the fear takes over and it's all I can do to hold it together and make it through to the other side.

You should know that Cody did stop in to check on me and see if I needed anything around 10 p.m. I need for him to be 17 and to stay overnight with friends and not be limited taking care of Mom 24/7. And I aaked Melodee to come over early in the evening and she stayed until after 10. She even brought Cherry Garcia ice cream from Ritter's (more on that later). I know if I ask, all of you would come. That's a good feeling for me. But every once in a while, I wish I was 5 years old again, and when I woke up in the night, my Mother would be there to wrap me in her arms and rock me to sleep and assure me that "everything will be fine!"

Thanks for your love and prayers.
Lenette

Going Home!

Going home around 7 or 8 tonight. Even though my weight and fluid is still up there, we've done all we can do here. We have a plan for the new normal. It captures the new ways we have to manage the fluid each day. I weigh what I weighed when I delivered all 3 of my boys - 185. Then I delivered babies that were 10'2",
8'6 1/2" and 9'15". It's not fair that I don't get a cute little guy to take home! But then we all know "Life's ls Not Fair."

I'm ready to be with the boys. thanks to all who sent flowers, visited, and took care of me in one way or another. I may need a little help next week - maybe one meal (just one)
Love to all.
Lenette

Fluid Drained

The highlight of the day was having a CT Scan and using it to find pockets of fluid and then draining over 2 liters of fluid near my liver. They would have and definitely could have drained much more, but my blood pressure was really low (even for me)so that's all they drained. I am able to breathe much better because there is less pressure in that area.

Also, I'm working with Dr. Adrian and Dr. Spahr, Oncologist, and they're coming up with some other alternatives for the fluid issue. So I feel HOPE again...and that's been lacking here lately.

David and Cody were here again today. David took me to the hospital yesterday and Cody came later. And Tommy also came yesterday. What a treat to have all 3 boys in one day!!! Tommy returns to school in a week and a half to take 2 summer classes and workout with the rest of the team. But, one day at a time...they're all here today.

Love to all,
Lenette

In the Hospital Again

You know how much I hate to write those words, but unfortunately, it's true. This afternoon was the first time I saw Dr. Adrian since I checked out of the hospital in early May. There is a long list of things that are going wrong. m0stly,since my liver is not draining properly, it's collecting fluid so I weigh more now than when I gave birth to the boys.

Wednesday - They're going to try to drain some fluid out of my abdomen so that I'll be able to breathe better. First, they have to give me frozen plasma and that takes a while. It actually feels cold going in. Kind of bizarre, but worth it. A lot of things that could go wrong, though, so it might not happen until tomorrow. Last time, they were able to drain two liters off.

I would really appreciate your prayers these next few days, rather than your visits. You can respond to this blog or email me at lenettefr@comcast.net. Dr. Adrian and I are aiming toward a shorter visit this time, rather than the two week visit I had last time. Love to all of you, Lenette

I Hate Pain!!!

Truly, I do. I'm pretty good until there's pain. I'm a positive person. I wake up in the morning and the first thing I do is pray...I pray for the safety of my 3 boys and then I thank God for everything He's given me. But more and more each day, I am experiencing this severe pain. Today it is making me ache -- my stomach is SO LARGE that I look like I'm pregnant with twins. When I delivered each of the boys, I weighed 185 lbs. Yesterday, I weighed 186. All my organs are pushing against each other and my skin is stetched so tight that it hurts to move. I've just taken some pain meds which means I won't be able to work for a while, but I'm not very productive right now anyway.

I'm waiting to hear back from Dr. Adrian with answers to a series of questions. I don't want to go back to the hospital. I'm willing to fight this at home if I can since there's not a whole lot more they can do for me in there.

Please pray that my pain will go away and that I will find a way to cope with this hurdle. I love you all and appreciate your friendship and prayers.
Lenette

I Hate Pain!!!