Updates on Lillian, John and my book...

I spoke to my mother in law last night. She said that Lillian has finally gotten her tracheotomy out! Marian walked in the room and didn't notice at first. Then Lillian covered the hole in her throat with her fingers and said, "Hi, Mom." Marian said that she sounded just like herself. I was so excited and thankful to hear that! I couldn't wait to share it with all of you.

Marian said that Lillian is still having a lot of pain. The doctor is going to start weaning her off the morphine and it won't be easy because she has pain even with the morphine. Her jaw was broken in two places, she has an incision that begins in the middle of her lower lip, goes down her neck, over from her collar bone to her shoulder, up the shoulder and neck to her ear (a flap they could peel back to do the surgery). She had muscle taken from her chest and placed in her neck. She has had tubes in her neck and an abscess in her incision that has taken a long time to heal. And she told Marian that the inside of her mouth feels like a train wreck. So I can't imagine her NOT having pain.

She will be going to rehab soon to learn how to eat and to receive some speech therapy. But Marian said that she is talking pretty well. They don't want her to talk too much, though, because it will make her hoarse. This whole time, not knowing if she would be able to talk normally, I kept thinking that I just couldn't imagine a silent Lillian! (Those of you who know her know exactly what I'm saying!)

After rehab, she will get to go home to her apartment. Radiation and chemo will begin shortly thereafter. It sounds like she will have both at the same time. It's likely she will lose all her teeth from the radiation. Bennie is going out to be with her next week and Marian is going to fly back to Nashville on Tuesday. She has been there for four weeks. This was such an encouraging report, I wanted to share it first thing this morning.

John seems to be fully recovered from his kidney stone surgery, but his CLL causes him to feel fatigued a lot. He just left for work and I asked how he was feeling. He said, "Not too good." (Of course, he wouldn't tell YOU that if you asked. But he does tell me.) His lymph nodes are growing again and getting more noticeable in his neck. He had a steroid shot in early May that kept them in check for about a month before they started to slowly return. He will get another shot soon that should last until his next appt. with Dr. Flinn in mid-August. And then we will make plans for the "real treatment."

Dr. Flinn is not in favor of using steroids to deal with his lymph nodes. He says their negative side effects will become more obvious down the road. They don't resolve anything, they just mask symptoms. He recommends going ahead and having the standard therapy for CLL (chemo) to put John in remission. Although one does not want to do chemo prematurely for obvious reasons, he has cautioned us several times that one can also wait too long and then have problems resulting from procrastination.

Treatment of this disease is an art, not an exact science. Every patient is different and every patient's CLL is different. In addition, every patient will react individually to treatment. Some patients sail through it with little to no side effects, saying they feel better than they have felt in years after receiving the chemo. Others say they have the immune system of an AIDS patient after chemo and suffer chronic illness (sinus infections, pneumonia, shingles, to name a few of the possibilities). One of my chemo fears is the possibility of John developing "bad markers" or a transformation of his CLL to something more aggressive as a result of chemo. That happens, too. And that is one of the reasons I have hoped John could go a long time without having to do it. But since it doesn't look like that will be his lot, I am trying to think positively and focus on all the good outcomes I've read about.

John didn't want to be in the middle of chemo this summer because his old band (from the seventies) is getting together in Evansville for a July 4 reunion concert. Dr. Flinn understood that and gave him the okay to use the steroid shots to get through the summer. I don't look forward to this next step in the CLL journey. But I also recognize that John doesn't feel good so much of the time and Dr. Flinn really believes he will feel better once he's in remission.

I sent my manuscript back to the editor after trimming it by 21,000 words. I talked to him on the phone two nights ago. He said that he is finishing up a project he's been working on and will start focusing on mine in the next couple of days. He thinks I can have this ready for printing within a month or two. He gave me a breakdown of the costs involved and explained that if I do a paperback and a hard cover, I will have to design two different covers. Also, the production costs will be greater. So I have decided that I will initially print only paperback books. I want to keep our investment as conservative as possible until I see how many readers will actually buy this book. It will be simpler and more cost effective to print one version. And I want to recover the initial investment before I spend any "extra" money.

However, if the book sells above my expectations, I can have hard covers designed and printed down the road at any time. And I definitely will. So if you voted for a hard cover book, you will have that option eventually; just not in the beginning. The poll has been fun for me to see that there are a few of you who would like to buy a hard cover book.

What I wish is that I could simply GIVE the books away. John says I can't do that. LOL.

I will keep you posted on my progress.

Comments

John Wagner said…
I think Lillian is making fantastic progress after such extensive surgery. I went back and read all the posts with her name. Hard to believe it was only the beginning of May when you first heard of her diagnosis. Praise God for his healing and I pray she continues to progress and she receives relief from the pain.

Chemo is obviously very scary. For me the build up and aticipation before starting was much worse than the actual experience. I was one of the fortunate ones who tolerated it very well. Do keep in mind that the results for the vast majority are very positive. Even though I didn't reach remission, I still consider the results to be positive. Almost three years since last chemo. We do have a tendency to focus on those with lots of difficulties after and, although it certainly can happen, it usually does not. John seems to have a great attitude, you are a terrific support and with prayer warriors behind both of you, he will do well when the time comes.

Someday when your book is on the NY Times best seller list and you are being interviewed on TV, I can say, "I knew her when..."
Celeste Maia said…
After John's comment what can I say? I agree with everything he wrote. I also went back and read all the posts on Lillian, and I will be praying that she continues to recover and does not have too much pain.
Your John is right, you do not give your book away. At the beginning of my painting career I felt embarrassed to sell my paintings, I also felt I should give them to the people who truly appreciated them. After all these years I feel very good now about selling them, it is my work, and I feel proud about it. The same will happen with your bok. I cant wait for it to be published!
Celeste Maia said…
After John's comment what can I say? I agree with everything he wrote. I also went back and read all the posts on Lillian, and I will be praying that she continues to recover and does not have too much pain.
Your John is right, you do not give your book away. At the beginning of my painting career I felt embarrassed to sell my paintings, I also felt I should give them to the people who truly appreciated them. After all these years I feel very good now about selling them, it is my work, and I feel proud about it. The same will happen with your bok. I cant wait for it to be published!
Shari said…
John, I don't think this is the type of book to make the NY Times Best Seller List, but you can still say that you first met me "back when" I was just writing the (still unbroken) world=record-holding, longest "introduction" on the CLL Christian Friends Forum! LOL! A couple of times I almost posted that the reason I hadn't shared my testimony on the site was because it was 'a book.' Now it really will be! Thanks for your encouraging words and constant support. Love your comments.

Celeste, I am so happy for our recent friendship. Thank you for your encouraging comments. I am honored that you would be interested in reading my book.
Betty said…
Thank you for the updates on Lillian and John. These difficulties require a positive attitude and great faith.
I will keep them both in my prayers. Shari,you are a wonderful support for John.

I can't wait to read your book. I feel honored to have been your teacher and friend.To be able to see how one has developed from that first day in kindergarten to adulthood is truly a blessing few have the opportunity to experience. LOL
JANELLE said…
My heart goes out to Lillian, I have prayed for her everday and will continue until her full recovery! It certainly sounds like John is in the very best of care.

I, too, cannot wait to read that your book is #1! As I've told you before, I will set up tables for your signing!! Thank you Shari, for your undaunting friendship, you have treaded willingly through my despair and carried me,when I couldn't see, with the love of Christ and as a true friend..A true friend is one that see's you through and through..and loves you anyway...thank you for being my friend and supporting my heart when it was at its absoulute weakest point. I will never forget that. Ever.
Love,
me : )
Shari said…
Janelle, I was telling Eric and Ann today that you and I are closer friends than I ever imagined we would be. Your "despair" drew me to you. I wanted to share the Gospel with you and be an unconditional friend. Out of that grew a real, reciprocal friendship. I will never forget when you made it clear to me how much you valued my friendship and loved ME "anyway." That spoke volumes to me. I don't expect my book to be a big seller, but if there are any book signings at all, I'm calling to take you up on that offer!

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