Monday, January 31, 2011

Thirty-Three Years of Being a Mom

At 9:13 a.m., January 31, 2011, my little boy will turn thirty-three years old. He has been married for eight and a half years and is now the father of three boys of his own -- making me a very proud grandma. Joshua is five, Andrew is almost four, and Pax is nine months old.

When I was thirty-three, Danny was a high school freshman. I like to think I was a much better mom to my high school son than I was to my little boy because ... well ... the truth is, I was still a kid myself when he was a little boy. I know that I wasn't the world's greatest mother back in those days. I didn't mistreat him or neglect him (unless you define neglect as frequently forgetting to pack snacks in his diaper bag for the church nursery). I just wouldn't have won any awards.

But I got better as we both grew.

Some of my favorite memories are from the years during which Danny would call and ask me if I would make pizza for him and some friends (throughout high school and college). I would usually ask how many friends he had in mind. Sometimes it was three or four. Sometimes a dozen. A few times he asked, "Is thirty too many?" (Usually during March Madness or for his birthday.) In contrast to his earlier years (when my tendency was to say "no" or "we'll see" to his requests), I almost always said yes to my teenager. And most of the time, in addition to pizza, I baked chocolate chip cookies. Lots of pizza. Lots of cookies. Lots of friends.

I think those were my favorite "mom years" (while Danny was living at home). I enjoyed getting to know his friends and cooking for them. And Danny used to joke that I was the reason he had friends in college. It wasn't true, of course, but I am remembered by some of his friends to this day primarily for my homemade pizza.

There have been a lot of good memories throughout the years. Danny was always a good kid. I'm sure he did some things I didn't know about. I never thought he was perfect or completely innocent. He endured many lectures (from me) about taking his school work more seriously (both in high school and college). And there were adolescent times when he felt his oats and got that tone in his voice. But I always knew I was very fortunate. He never went too far in any wrong direction. He has always loved God. And he has always looked forward to being a dad (as far back as I can remember).

I've enjoyed being Danny's mom at every stage of his life. However, no period of time has been more sweet or rewarding than the last ten or so years of watching him become a man. It is such a blessing, as a mother, to see the gifts God has given him develop and flourish in his life; as a coach and Bible teacher, as a husband and father, and most recently as an assistant pastor and youth minister.

One of the best days of my life was the day Danny and Rebecca got married. I had always looked forward to having a daughter-in-law. I saw the next step in his life as an enhancement of my own in that I would get to have a daughter as well as a son. And grandbabies -- which I also always looked forward to -- would be in view.

Three more "best days" of my life were the days each of those precious little grandsons came into the world. I think I cried every time I looked at Joshua the first year of his life (very happy tears). And although I have gotten used to being a grandma at this point, I still sometimes tear up just looking at one of them; thinking about how blessed I am and how much I love them.

For me, the best years of being a mom are not in the past when Danny was still little.
These are the best years (so far).

Danny, I'm so glad I get to be your mom. About this time (8:15 a.m.) thirty-three years ago, you were causing me a great deal of pain. For some mothers, childbirth is only the beginning when it comes to the pain they experience as a mother. But not this mom.

I am so blessed.

You have been a joy, an inspiration, and a friend. I am so thankful for you and so proud of the man you have become. I frequently tell you (and everyone) how blessed you are to have Rebecca. Today I want to tell you (and everyone) that I also think Rebecca is blessed to have you. And I think my grandchildren have the two best parents in the world.

Happy Birthday to you ... my wonderful son. I love you very much.

Friday, January 28, 2011

Grace: Astonishing & Amazing

ASTONISHING GRACE Sermon Podcast
(My son, Danny Bryant, is the speaker.)

This video is from a recent service at World Outreach Church (where I attend).

Thursday, January 27, 2011

"Choosing To SEE" (... and confessing my weakness)

I haven't been writing my usual blog posts this month because my mother-in-law's health issues have been the all-consuming business of life for me since the start of the new year. That is the primary reason.

The secondary reason is that I have struggled so much emotionally this past month. There have been times when I would have loved to spill my guts all over this blog and confess (as I do) to all the emotional stuff going on inside me. Because confession IS good for MY soul. Writing is one of the ways I process and work through my struggles. But at the same time, I have wanted to be cautious. I haven't wanted to make this about me and my struggle when Marian has been going through such a rough time.

One of the things I learned from four years of Christian counseling is that even my insecurities are a form of self-involvement. And although there has been plenty of stress recently, I recognize that some of my emotional struggles are a reflection of my selfish nature. When my thoughts gravitate toward how much I wish my life could get back to normal, I recognize that as selfish. I don't like it that I have a selfish nature to contend with. I want to be the perfect little selfless caregiver. But, really, I'm not. I struggle. Oh sure, I am doing the "right" things ... for the most part. But I remind myself that I should be doing the right things with a joyful heart and for the glory of God. The truth is, sometimes I'm going through the motions with a melancholy heart.

I know I can't be perfect. I've known that all my life. But it doesn't stop me from expecting perfection from myself. And falling short of my expectations often causes me to feel guilt, which is not at all helpful. I remind myself that I must fall on God's grace to give me strength in difficult times. But I have a propensity for being hard on myself when I am feeling inadequate. Those are the times when I am most thankful for the awareness of grace. And the older I get, the more I am in touch with how desperately I need God's grace.

There are great things that come with age. At the moment, I'm painfully aware of the not so great things.

I will be 52 in May. I can literally feel my fluctuating hormones lately. Although I have yet to experience a hot flash, there are days (sometimes in succession) when I feel like I'm coming out of my skin all day long, for no real reason. Of course, the harder you try to conceal that and not acknowledge it, the more anxiety you feel. (I am thankful every day for my kind, loving husband, who listens and cares when I'm feeling blue or anxious.)

I wake up tired every morning. I used to get up with John and kiss him good-bye at the door every single day. In recent months, I hardly ever feel ready to get up when he's leaving (between 6:00 and 6:30). I have asked myself a few times lately, "Am I depressed?" I know the questions and answers that help diagnose depression. And I don't think I'm depressed in a clinical sense. But I may be experiencing a touch of situational depression.

I am reading Mary Beth Chapman's book, Choosing to SEE right now. And it seems like perfect timing. It is an incredible book and I highly recommend it. I have read Mary Beth's blog many times and have always deeply admired her emotional honesty and insight. She writes openly and honestly, as I do, but she is a public person with thousands of people reading her blog. Yet she does not hold back. She is transparent and real. She is a very inspirational Christian woman who chooses to reveal herself as flawed. She speaks honestly about her own struggle with depression. And her willingness to share so personally has been comforting to me in the midst of my own struggle. Whenever I read writers who are self-revealing, I feel less alone. I always want to thank them for that. And probably never any more than right now.

There have been people in my life who have had a very hard time with my tendency to "put it all out there." Someone who is not like me cannot understand that part of me. And I've had to make peace with that. In the past, I have allowed certain people to make me feel defective for being who I am. But as I read Mary Beth's writings, I feel reassured that God made me this way for a reason and I don't owe anyone an apology for sharing my heart and my struggles. I don't choose to hide behind a mask. And the older I get, the more I see that as a strength rather than a weakness. Don't get the wrong impression. I am aware of my many, many weaknesses and flaws. But I no longer view that particular trait as one of them. (This would be one of the good things that has come with age. I finally realize that God created me with the personality He gave me.)

Mary Beth's courage in sharing her private struggles has inspired and encouraged me. I only hope that I can do the same for others, even if on a much smaller scale. And that is part of the reason I confess my struggles.

I am about to read chapter eighteen: "I Just Met A Girl Named Maria". I have not lost a child, but my husband has. And we were together when Brittany went to heaven at the age of eighteen. There have already been many ways I have been able to relate to Mary Beth in the first seventeen chapters. I was emotional early on, reading the dedication and the notes to each of her children ... while sitting in the waiting room as Marian had scans on Monday. I have been thankful for this book all week, as I have been having a tough time with my own emotions, worries and fears. It's hard to put down.

My son has had the privilege of knowing the Chapman family. He has many times told me how genuine and what an amazing Christian family they are. SCC's lyrics have spoken to my heart so many times and in so many situations. I remember listening to "King of the Jungle" while still deeply enmeshed in the cult I eventually left. When I was feeling shattered and disillusioned by heartbreak after heartbreak during the nineties, I would play that song over and over in my car to remind myself "that the Lord of the gentle breeze is Lord of the rough and tumble." And after I left the cult and found the true gospel, I would cry every time I listened to "Remember Your Chains." I still do. The title of my book (Breaking the Chains) was inspired by that song.

And now I am being inspired and uplifted by his wife, Mary Beth. I have not had the privilege of knowing her or her family. And yet I now feel as though I do.

I doubt she will ever read this blog, but I would love for her to know what her testimony means to me and how much I appreciate her for opening up and sharing her heart with me. Thank you, Mary Beth.

Tuesday, January 25, 2011

Good News

We got the results today of Marian's CT scans and PET scan yesterday. In Dr. Flinn's words, "Everything looks good and your PET scan was stone cold normal."

This means that her CLL has not transformed into something more aggressive and there is no secondary cancer causing hypercalcemia. Really good news.

Marian resumed CAL-101 at a lower dose tonight. She is now taking 100 mg. twice a day instead of 150 mg. twice a day. Her WBC is down to 17.3. A huge improvement from the number prior to beginning treatment (53.8). Her other numbers were about the same today as they were last week.

She gets to stop taking Cipro and Prednisone as of today. She will continue on Valcyte, Fluconazole and Dapsone. Valcyte is an antiviral to protect her from CMV infections. Fluconazole is an antifungal. Dapsone is an antibacterial. When the fungal culture comes back -- if it's negative -- I'm assuming she will get to stop taking that too.

She will have to have her blood drawn weekly for a couple of weeks to keep a close check on her CMV and calcium levels. CMV is one of those viruses that most of the population is exposed to. But it lies dormant in our bodies just like herpes zoster (chicken pox/shingles) and then gets activated in some people. It is more likely to become active in an immunocompromised patient.

We still don't know for sure that the hypercalcemia and pneumonia were related, but Dr. Flinn said it is a logical conclusion at this point to believe they were.

So with no transformation and the good response to CAL-101, it appears that Marian just needs to regain her strength, put on a few pounds and get on with living her life. : )

Saturday, January 22, 2011

The Melancholies

I could hardly make myself get out of bed this morning. John called me around 9:00 and I said, "You're not going to believe this but I have only been up for about fifteen minutes." I am always up between 6:30 and 7:30 at the latest. But this morning I just wanted to go back to sleep every time I woke up. So I did.
Both Marian and I were battling a light case of the melancholies this morning. But we got over the hump together. We have had many heart to heart talks in recent months and I am always reminded of the many reasons I love my mother-in-law so much. I have always appreciated that she loves me just the way I am. And she really does.

When she went back upstairs to rest, I worked out on my stairmaster and then finished a book soaking in the tub with a cold glass of orange juice. My big spa tub filled with the hottest water I can stand is my favorite spot to relax. And whenever I have the time to go to "my spot," I go. I stayed extra long today.

The book I finished was "I Don't Have Enough Faith to Be an Atheist." And, as is often the case for me, the part of the book I read this morning could not have been more timely. Toward the end, there are several conversations between an atheist and a Christian on several subjects. One of them focused on why God allows evil and suffering. I doubt that any of us, even Christians, have not wondered at some point in our lives why God allows certain things to happen as they do in this world. Because my belief in God and His love is strong, I have never felt like I had to have answers to all my questions. I haven't felt the need to make God fit into my finite mind. I trust. And I suppose it helps that, by nature, I am a trusting person.

As I've shared previously, I bought this book because I haven't ever wrestled with believing and yet I know others do. I wanted to learn more of the actual evidence for the historical accuracy of the Bible and Christianity. There is so much more than I was even aware of. I have always believed that faith doesn't require evidence, but after reading books like this one and "The Apologetics of Jesus" by Norman Geisler, I have discovered just how much evidence God HAS given to us. Dr. Geisler makes the point in "The Apologetics of Jesus" that Jesus never asked anyone to blindly believe.

So as I read the "debate" in the book on suffering, I wasn't questioning God in my own heart. But the things I read still spoke to me and strengthened me. On the subject of suffering, the author (speaking as the Christian in the conversation) said...

Christian: Can you name me one enduring lesson that you ever learned from pleasure?
Atheist: Give me a minute.
Christian: I could give you an hour; I doubt that you would come up with much. If you think about it, you'll find that virtually every valuable lesson you've ever learned resulted from some hardship in your life. In most cases, bad fortune teaches while good fortune deceives. In fact, you not only learn lessons from suffering, but it's practically the only way you can develop virtues...
You can't develop courage unless there is danger.
You can't develop perseverance unless you have obstacles in your way.
You won't learn how to be a servant unless there's someone to serve.
And compassion would never be summoned if there were never anyone in pain or in need...

Thursday, January 20, 2011

Making Excellent Progress

Marian was scheduled to see the nurse practitioner today, but we saw Dr. Flinn instead. I was glad. He said he is very pleased with Marian's recovery and her response to the CAL-101/Rituxan therapy. We will see him again Tuesday. And after that he will see her every two weeks in February. Once he is satisfied that she is fully recovered from the pneumonia, she will be able to resume four week intervals for office visits. After December 29, she was supposed to go from two week visits to four week visits. But then came pneumonia.

Dr. Flinn reduced her prednisone from 20 mg. to 8 mg. today, and said that he will probably discontinue it completely when he sees her Tuesday. She will continue on her current medications (anti-viral, anti-bacterials and anti-fungal) for two to three weeks, then discontinue some/continue others. But the number of prescriptions will definitely decrease over the next month. He said that nothing has grown from the cultures so far and he doesn't expect a fungal infection to be the cause of the pneumonia. He explained that the pneumonia could have resulted from a viral infection that made her vulnerable to a bacterial infection, resulting in the pneumonia. But there has been no positive result from any of the cultures thus far. Every result that has come back has been negative.

Marian seems a little stronger every day to me. She has lost about seven pounds since her hospital admission on the 6th and she was down two or three pounds from her normal weight prior to that. But her appetite is back and she's eating very well. So I expect her to be back to normal soon. On the way home from Nashville, we stopped and ate an early dinner at Fulin. And then we drove through Culver's and shared a hot fudge sundae. This was my first Culver's frozen custard, by the way, and I loved it. (I foresee more Culver's hot fudge sundaes in my future.) As we were eating the sundae, Marian said, "Their ice cream is so good in the summertime." And I said, "It's pretty good in the snow, too!"

I don't want to fail to mention the great results Marian has gotten from her treatment regimen. The CAL-101/Rituxan combination therapy has been very successful. Her lymph nodes responded first. And now her blood is showing more impressive results also.

Here are her numbers before treatment and four months into treatment.

September 21, 2010

WBC (White Blood Count):  53.8 (normal range: 3.8 - 10.8)
ALC (Absolute Lymphocytes):  43.3 (normal range: 0.85 - 4.1)
HGB (Hemoglobin): 11.5 (normal range: 13.8 - 17.2)
HCT (Hematocrit): 36.6 (normal range: 41 - 50)
Platelets: 92 (normal range: 130 - 400)


January 20, 2011

WBC:  20.8
ALC:  9.6
HGB:  13
HCT:  42.6
Platelets:  225

Dr. Flinn said today that he will probably have Marian resume CAL-101 at a lower dosage. Her clinical trial dosage is 150 mg. twice a day. But the attending physican does have some flexibility in adjusting individual doses over the course of therapy. John has had great results on the lowest dose of 50 mg. twice a day. But other patients have required higher doses. I believe the highest dose given has been 300 mg. twice a day (that's the highest dose I have personally read about). And, of course, one of the purposes of a clinical trial is to find the most effective dosage with the lowest toxicity. John's low dose is not effective for a lot of patients, but [thankfully] it has been for him.

I'm very excited about Marian's numbers. I told her tonight at dinner that I never thought she wasn't going to survive the pneumonia. I felt like she would pull through. But I DID wonder if this would be the beginning of a downward spiral for her. John and I talked about it because he had the same concerns. Dr. Flinn confirmed today that her condition was "scary" (when she told him that she had feared she was not going to get well). But she has made great strides in the last week, Dr. Flinn said he is very happy with her progress, and I believe she is going to have a full and complete recovery.

Wednesday, January 19, 2011

Another Good Day

Today was Marian's first full day home from the hospital. I guess I should say she's in her "home away from home" (aka: our house).

She had half a banana, a poached egg, and toast for breakfast. Rebecca and the boys came out for part of the day and I made tostadas and guacamole for lunch.

It was so good to see the kids. I had not seen my grandsons since Christmas Eve. I don't think I have ever gone this long without seeing them and I couldn't wait for them to get here. I told Marian not to feel like she had to stay downstairs and visit the whole time. I encouraged her to spend as much or as little time hanging out with us as she felt up to, but then to feel free to excuse herself and go rest any time. However, the kids seemed to energize her and I was amazed at her endurance. She never went back upstairs until they were leaving. And then she rested until dinner.

My friend, Anita, asked me yesterday what she could do to help me. Ninety-nine percent of the time my response to this question is "Nothing." But this time I said, "I'd let you make us a chicken and dressing casserole if you want to." I love her chicken and dressing casserole and so does John. So she made it for us today and Mark brought it over. I made green beans and Sister Shubert rolls to go with it, and opened a can of cranberries. It was so good. And I am miserable because I ate way too much today.

Tomorrow afternoon we have an appt. to see the nurse practitioner in Dr. Flinn's office. Monday Marian will have CT scans and a PET scan. Then Tuesday we will see Dr. Flinn and review her test results. She is on a hiatus from CAL-101 until she is sufficiently recovered. And then we will reevaluate her options.

Although she is not 100% and is slightly overwhelmed with the number of prescriptions she is having to take right now, she's doing amazingly well; especially considering the shape she was in just one week ago.

I feel like I am continuing my learning process as a caregiver in numerous areas. I want to be an emotional caregiver as well as a physical caregiver. And almost daily I think about what it will be like when I am Marian's age and/or facing my own health issues. How would I want to be treated, spoken to, cared for?

There can also be a great deal of stress in being a caregiver. For me, much of it can be self-imposed. So in those moments, I find myself thinking about my daughter-in-law and what it will be like for her if she is caring for me one day. Last night I was reflecting on several conversations and projecting myself into the future. And I thought of a possible book I could write...Letters to My Daughter-in-Law. It would be a collection of essays on caregiving, the stresses and the rewards, including personal anecdotes. The first chapter would be: Be Kind to Yourself. I would want her to know that I understood and related to what she was going through. When that day comes, I may not be able to remember or communicate it quite as effectively as I could if I shared my thoughts today. But I'm already thinking about how much I appreciate her in advance. I know I have the kind of daughter-in-law I am trying to be. It's an enormous comfort when I think about the future.

Because I love to write, I often contemplate different future book ideas. There are a variety of things I would like to write about. Maybe one day I will find the time and energy to explore one of those ideas.

Tuesday, January 18, 2011

She's been sprung!

Marian gets to come home this afternoon.

I was almost to the hospital when I got the news, so I turned around and came back home to get her some clothes. We took everything home when she moved to ICU and I thought tomorrow was the earliest she would be discharged. So I was caught unprepared for the good news.

I'm just here for a few minutes to get her things together and return to the hospital. But had to take a minute to post this. I should have anticipated this possibility after how well she did yesterday and last night. Oh well. It's a nice surprise and well worth the extra trip.

Monday, January 17, 2011

A Really Good Day...

Marian is spending all of her time sitting up in a chair now. She walked twice today. She ate well. Food is starting to taste good to her again. And she is being weaned off of the oxygen. When I left near 7:00 pm, she had been off the oxygen for a couple of hours and was maintaining an acceptable oxygen saturation. They'll check her frequently throughout the night to make sure it stays that way.

Dr. Flinn thinks she will be able to come home (to our house) Wednesday or Thursday, barring any unforeseen complications.

She was scheduled for an aspiration of some remaining fluid in her lungs this afternoon, but the pulmonologist changed his mind and didn't do the procedure. There was such a small amount of fluid, it did not merit the risks of the procedure.

When she was brought back to her room, she was telling the gentleman who transported her about her CLL and the recent health issues that put her in the hospital. Without hesitation, he asked if he could pray with us and we said yes. He then laid hands on her and prayed powerfully over her, commanding the pneumonia to leave her body by the power and blood of Jesus. I don't know if Marian had ever had anyone pray over her this way, but it was a very positive experience and she was so thankful for him. I felt the Holy Spirit in the room and Marian was visibly touched by his prayer. We both felt like he was a Godsend to her - to us - this afternoon.

Today was a really good day. It was just Marian and me and I enjoyed every minute with her. I haven't felt tired or stressed. And I wasn't eager to leave the hospital. I felt like I wanted to stay just as long as I could.

I am so relieved she is doing so much better.

Sunday, January 16, 2011

Soup and Chocolate Pie

This morning we went to church at 8:30 and I felt like I could go to sleep standing up. It was a good service, but I had a hard time connecting with anything. I couldn't figure out why I felt bad after I'd felt so good yesterday. On the way to the hospital, I was weepy again. I'm so glad I can verbalize what I'm feeling to John without judgment. He's not wired like me emotionally, but he is always compassionate. At one point, I told him about something that was bothering me (nothing to do with him). I said, "I know it isn't true, but I feel like..." He agreed that it wasn't true and then added, "One of the ways you and I are different is that I have no emotional expectations of anyone ... and you do." He then added that it's not necessarily wrong to have expectations, it's just easier when you don't. He's right. I wish I could be more like him in some ways. But even though I'm not as "even keel" as he is, I'm glad I am at least rational enough to recognize that everything I feel right now is intensified by fatigue. Since Marian was sitting in a chair when we arrived, I reclined on her bed and was able to doze a little bit while watching football. It helped.

Dr. Flinn told Marian this morning that she would need to stay several more days. She couldn't remember if he'd said "three or four" or "four or five." I guess the earliest she would be leaving would be Wednesday (Day 14). I never would have imagined her staying in the hospital this long when she was admitted. But I don't want her to come home prematurely and have a relapse. I just want her well, however long it takes.

She did six laps around the floor and told me she was going to walk again later this afternoon (after we were gone). Just before we left, she was looking at her dinner choices. Hospital food just isn't that appetizing. And she's been there for eleven days. So nothing sounds good at this point.

Chocolate Chess PieOne thing I know that has been sounding good to her is homemade bean soup. So when we got home tonight I made a pot of bean soup and I'm going to take some to her for lunch tomorrow. I also baked her a double chocolate chess pie (because she mentioned how much she loves chocolate pie tonight). I will pick up a can of ReadyWhip and some Starbucks coffee on my way in tomorrow. I can't wait to see the look on her face when I arrive with homemade food...

It's funny the things that can swing my mood in a positive direction. I have never fully shaken my exhausted feeling today. And I'm still tired. But it gave me a lift to make a couple of her favorite things tonight. I even felt a little burst of energy while I was busy in the kitchen.

Saturday, January 15, 2011

What a difference a day makes!

This time I'm not talking about Marian. I'm talking about ME!

Yesterday was the first day I did not spend at the hospital since Marian was admitted on January 6. I had an appointment to have my hair "refreshed." Other family members were planning to come. And I knew I needed to take a day and just rest. Of course, when you've been going to the hospital daily, you let a lot of things go at home. So I needed to do laundry and a few other minor chores.

I was looking forward to yesterday and thinking how good it would feel to exercise, soak in the tub for as long as I wanted, get my hair done, and have dinner with John. But I woke up yesterday in this awful blue funk. I worked out and got in the tub as planned. But instead of enjoying it, I soaked and I cried and I wondered why I was feeling so depressed just when everything was starting to look up!

Actually, this has happened to me before. I am strong in the crisis, but as soon as the pressure lets up and my adrenalin goes back to normal, I feel all the emotion I have been pushing down in order to do what I need to do. I think it was more of an emotional exhaustion than it was physical. But I did feel bad physically too.

I went to my hair appointment and my stylist (who has been doing my hair since 2004) said, "I have never seen you look this tired." I told her about Marian's hospitalization and what the week had been like and that I was pretty worn out. But, as usual, I left there feeling better than when I arrived. There is something about a fresh cut and hair color that makes me feel all new.

I am very blessed to have some wonderful people in my life who provided the shoulders I needed just when I needed them. One person in particular emailed back and forth with me yesterday and took the time to not only be a sounding board, but also to respond with just the right words. Gentle reminders, wisdom, lots of comfort and empathy. That person helped me probably much more than they realize. Other family members communicated love and support that was much needed and appreciated.

I chose not to post anything on my blog yesterday because I felt so down. I didn't want any men in white coats to show up on my doorstep and try to take me away. Ha.

We had a relaxing dinner with friends last night. It felt good to do something normal; to have fun and laugh. I slept like a rock. Woke up with these huge bags under my eyes, actually, from sleeping so hard. But in spite of looking at myself in the mirror, I felt better today from the moment I woke up. Then I got a phone call this morning from someone who made me feel so loved and appreciated and lifted my spirits even more. I feel like I have had an IV from God. (And now even the puffiness under my eyes is starting to go away.)

It's sometimes hard to believe what a difference one day can make in how you feel. In light of how bad I felt yesterday, I'm amazed that I could feel this good the very next day. But I do. And I'm sure it has something to do with all the people who have been praying for me. Thank you.

I've talked with Marian several times on the phone this morning and she sounds so good. She even asked me to bring her make up bag so she could put on a little lipstick! She's back!!!!! : ) She said Dr. Flinn came in and told her he wants her up walking today. So I'm going to help with that as soon as I get there.

I need to get busy and finish getting ready to go to the hospital. I've taken my time this morning and I know she is looking forward to me getting there. But I wanted to check in and let everyone know that everything is going well.

Thursday, January 13, 2011

Short & Sweet

I know what you're thinking. You have never seen this as a subject line for one of my blog posts and, let me just say that you probably never will again. But it is 8:00 p.m., I just got home, and if I don't work out immediately, I will go straight into the tub and just skip it -- which I can't really afford to do.

Bottom line: Marian is doing great tonight. She's back in a regular room -- the same room she started out in last Thursday. She seems to be holding her own. We brought her a big, juicy hamburger from Chili's and when we walked in with it, she said that she hadn't planned to eat anything on her dinner tray, but it actually looked good so she ate a little bit of it. And then she ate about one/third of the burger too. She obviously couldn't eat all of it, and said, "I'm sorry I wasted your money." I said, "Did you enjoy what you ate?" She said, "Yes, I did." And I said, "Then it was money well spent." And I meant it.

I expected them to have her up walking just a bit this afternoon and they never did. The nurse said they didn't want to push her too hard her first day back from ICU. And when she mentioned walking to Marian, Marian didn't seem all that gung-ho about it right then. So I think they let her wait and then probably forgot about it. But I'm sure they will have her up walking tomorrow.

I have felt really tired today. I think the whole week has caught up with me. I'm letting other family members hang out with her tomorrow and I'm going to spend the day at home, getting my laundry caught up. I also have an appt. to get my hair cut and colored right in the middle of the day and didn't want to cancel if I didn't have to.

This health scare began on January 3 when Marian was admitted to the hospital in Evansville. I drove up there and back on the 4th. She was released on the 5th, came straight to Dr. Flinn's office on the 6th and was admitted to Centennial, then went to ICU on the 10th.

Not exactly the way we expected to start the new year. But we are thankful for the outcome.

Dr. Flinn said this morning that all of the numbers that would indicate immunosuppression are actually very good. Her numbers don't indicate an immunocompromised patient. However, being immunocompromised is more than the counts themselves. You can have the right number of cells but not have cells that are functioning the way they should be. But there is no strong evidence that this pneumonia is the result of immunosuppression or CAL-101. On the other hand, we don't have evidence that it wasn't. Dr. Flinn said he will probably put her back on it when she's completely well and take stronger prophylactic measures against infection. Her CLL has been responding very well to the CAL-101. So based on what he knows at this point, he doesn't see any reason to bar her from continuing in the trial if she wants to continue. That is totally up to her.

Anyone who has had CLL very long, and especially those who have had treatment, can tell you that some aspects of this disease are a guessing game. You really never know how any one patient will progress or respond to treatment. Every person (and every case of CLL) has their own variation, which makes treatment an art as well as a science.

So far, every culture that has come back from the bronchoscopy has been negative. So we don't know what caused the pneumonia. But the important thing is that she is recovering and getting better.

Okay, so maybe that wasn't so short. I bet some of you (like Danny) thought, "Yeah, right" when you saw the link.

The truth is, I really intended to be brief. I'm just incapable.

Wednesday, January 12, 2011

Wednesday Night Update on Marian

Marian is still in ICU tonight, but she is continuing to improve. We still don't have a definitive conclusion on what caused the pneumonia. All the test results thus far have been negative. The only thing that has shown up is a low level of active CMV in her blood. The infectious disease doctor was in today and said that the CMV could have caused the pneumonia and they are treating it with an antiviral. Dr. Flinn said that he would be surprised if the pneumonia was caused by CMV at that low level.

The PCP test result that I had asked about (because I had found a rare case of PCP being accompanied by hypercalcemia) came back negative. Dr. Flinn said that was good because it's a particularly nasty bug.

Marian's hemoglobin dropped to 8.6, so they gave her two units of blood today. This is standard whenever hemoglobin drops below 9. Her hemoglobin already ran a little low from her CLL. So it's not surprising that her marrow has been affected by severe illness.

Marian seemed just a little less perky to me today. Although she still looked better. They gave her steroids to help her body fight the infection and they are backing off of those now. So some of her spunk yesterday could have been a result of the steroid. It also probably helped her appetite. Steroids are known to make you hungry.

Probably the biggest news today was that Marian was able to come down on her oxygen requirements. They are still giving her oxygen, but now she's getting 50% oxygen instead of 100% through the mask. And her saturation level is at an acceptable level. When I left, I asked her nurse if she would be back on the bi-pap machine tonight. And she said, "Maybe. Maybe not. It just depends on what her oxygen saturation does while she's sleeping." If it falls, they will hook her back up. It's exciting to think she might be done with that machine.

I asked Dr. Flinn for a vague estimate of how much longer Marian might need to stay in the hospital if she doesn't have any setbacks. He said he would expect her to be there another four or five days based on today's evaluation. She will move from ICU back to a regular room on the oncology floor before she is discharged.

I got to Marian's room today just before Dr. Flinn came in. As usual, I had several questions. When he left, I wondered if I was wearing him out with my questions. (He has never seen me this many days in one week.) If I am there tomorrow when he comes in, maybe I'll surprise him by not having any for a change. As of this moment, the only unanswered question any of us has is what caused the pneumonia. And once he knows that, I know he'll tell us without being asked.

Thanks, Lu!

I have received a lot of compliments on my caregiving as Marian has gone through this recent health scare. Words of affirmation ARE my love language. So I won't deny how much it has meant to me to know my family and friends think I'm doing a good job. At the same time, I want to make it clear that my sister-in-law Lu Anne Howerton has been right there with me every day. And she has played a major role in Marian's care as well! I just wanted to say that.

Plus, she always brings cookies! : )

Tuesday, January 11, 2011

Signs of Improvement

I don't take my laptop when I'm not staying overnight. So this is the first opportunity I've had to post an update to my blog today.

One of the first things we were told when Marian was moved to ICU was that the family needs to use this time to get rested. She is being extra-closely monitored right now and doesn't need someone with her at all times. I had stayed three nights in a row and hadn't taken a shower since Saturday afternoon. So I went home yesterday and did as I was told. I worked out for an hour. I ate dinner. I poured myself a glass of wine and soaked in the tub for over an hour. Then I went to bed and slept like a rock until after 7:00 a.m. John told me today about a brief conversation we had before he left for work this morning. But I couldn't remember a word of it. When I woke up, I thought, "Wow. I didn't even hear John getting ready for work." Turns out he kissed me good-bye, asked me if I was cold, and I said, "A little." So he turned the heat up one degree.

I was a little slow moving this morning, since I knew Marian was in good hands. I finally arrived at her bedside shortly after noon. When I got there, she was sitting up in a chair, eating lunch and cracking jokes. I could not believe how good she looked.

She still has a ways to go to be well. I am not intending to minimize how sick she still is. But I really believe she finally turned the corner. Since being moved to ICU, they have been imposing that bi-pap machine on her more assertively (which has made a big difference in her condition). She kept the mask on all night last night. When I got there, they had let her switch back to the mask that just emits oxygen (but doesn't force air into her lungs). And she was doing fine. But she still couldn't take the mask off and keep it off. She had to remove it to take a bite of her lunch and then put it back over her nose and mouth. If she is off of oxygen for a few minutes, her oxygen saturation starts dropping. She is recovering from those drops more quickly than she was prior to the ICU. But she still cannot maintain a healthy oxygen saturation on her own. She has to have constant oxygen from some type of mask.

I was so relieved when I saw her today, my eyes filled with tears. I don't know what it is with me, but all emotion produces tears. Today they were tears of joy.

She stayed in the chair until almost 3:00 p.m. And then she got back into bed and reluctantly wore the bi-pap mask again for a couple of hours before asking for a break. Her dinner tray did not look appetizing to her (I could hardly blame her), so she had part of a milkshake from Sonic and a few bites of an oatmeal cookie. But she has eaten more today than any other day since being admitted. She even asked if she could have ice cream for her peach cobbler at lunch. That in itself was a huge sign of improvement. She has not had an appetite and nothing has really sounded or tasted good to her in days.

When we left tonight, it was obvious that she had spent her little bit of increased energy. She seemed pretty worn out. I'm sure by now she is back on the bi-pap machine for the night and I hope she's sound asleep.

Most of the time her cell phone is off because she has not had the energy to talk. So if anyone reading has tried (and failed) to reach her, that's why. Although she's getting better, she still experiences a pretty swift decline in oxygen saturation when she takes the oxygen mask off (she has to remove it to speak into the phone). When that happens, she gets short of breath and then has to recover from the drop in oxygen level. So when she does take a call, it's important that she keeps conversations short so she can get the mask back on securely. In a few days, this shouldn't be such a problem.

I spoke to Dr. Flinn this evening and he is still waiting on test results to come back. But one result he did get today was that Marian tested positive for active CMV. Most people have come in contact with the virus at some point in their lives. 80% of people eighty and over in age have the antibodies. It's a virus that can lie dormant in the body for years and then become active for various reasons. The virus is a much greater threat to immunocompromised individuals, including people with leukemia (according to Wikipedia) and the elderly. Dr. Flinn told me that it's almost impossible to know for sure if Marian's immunocompromised pneumonia stems from CLL, from treatment, from age, or a combination of all three. But even a low level of active CMV is an indication that her immunosuppression is a factor in her pneumonia.

There are still many test results we are waiting for. Pneumocystis carinii pneumonia (PCP) is one strain of pneumonia Marian is being tested for. I think Dr. Flinn said that result should come in the next few days. This type of pneumonia sometimes causes hypercalcemia. It's rare, but it happens. I learned about it by searching online. And I asked Dr. Flinn what he thought about that as a possibility. He knows I am an avid researcher and continually trying to increase my medical knowledge for the benefit of John and Marian. But I think sometimes I still surprise him with some of my questions. I am the one who brought up PCP a couple of days ago in connection with hypercalcemia and asked if he was testing her for that. He was, of course.

Right now, Marian is getting four different antibiotics, one antifungal and now one antiviral. They are treating all the possible causes while waiting to find out which of the drugs was the one that made her better. But, as the infectious disease doctor said today, "If we get you well, that is the main thing. Then hopefully we'll get to know how we did it and which medicine actually made you better."

One of the nurses on Marian's original floor asked me why I didn't become a doctor. Well, I didn't tell him that the main reason is because I am intimidated by math equations that have letters in them. I can't imagine myself ever having been able to get through high level math or chemistry courses. But the main reason is that back when I should have been making decisions about what to do with my life, my world was very small and I had so many limitations put on me. I never would have believed that I had the aptitude or the potential to go into the medical field. But I realize now that I could have. I surprise myself at how much information I grasp and retain. But just having someone say, "You could have done this," feels nice. Because I really never had the confidence in myself that other people thought I had. Some people assume an outgoing person is a confident person. But it isn't necessarily true.

I really appreciate the way Dr. Flinn takes the time to explain details to me and answer my questions. When I brought up PCP and the possibility of it causing the hypercalcemia, he said, "You're right. That is a possibility." He does not have the "doctor ego" that you encounter in so many physicians. And I love that about him because he really is a brilliant specialist. I respect his knowledge and I think he appreciates the time and effort I've invested in understanding everything that poses a threat to John and Marian. We laugh sometimes about how I have been an unpaid PR person for him. I've sent several patients to him because I can't imagine anyone finding a better hematologist. And if you've read the top of my blog, you already know that I say what I think.

I may be starting to ramble. So I think I will close this installment and go to bed.

Thanks for checking on Marian's progress ... and even more ... for your prayers.

Monday, January 10, 2011

Checking in one more time...

I just called the ICU to check on Marian. The nurse said she is doing fine. They removed the bi-pap just long enough to give her some ice cream. And her oxygen saturation still goes down pretty quickly when she is without oxygen. So they are keeping her on the bi-pap. But the nurse said it is just going to take some time to get her over this. She said Marian's "spirits are up and she is precious."

Marian makes friends everywhere she goes. Even the ICU.

Monday Afternoon Update on Marian

Dr. Flinn moved Marian to ICU this morning. She did not take a turn for the worse, but she wasn't improving. One persistent problem has been keeping her oxygen saturation level up. That wasn't getting any better. She is being monitored very closely and was being kept on the bi-pap machine continuously when we left. I know they do not want to intubate her unless it is an absolute necessity. There were two very positive things this morning. First, she was hungry this morning and ate a pretty decent breakfast. Second, she seems to be getting more comfortable with the bi-pap machine and tolerating it better. She did not seem like she was in any discomfort when we left.

I am home for the night. The ICU nurse urged all of us to use this time to get rested. And I know I need to take her advice. For all my friends who have been worrying about me not taking care of myself, I am doing it. As soon as I get this update on my blog, I'm going to exercise and soak in a tub of hot water for I don't know how long.

For all of my CLL readers who are wondering about the CLL and/or treatment connection to what's happening, I want to explain what I know at this point.

When Dr. Flinn admitted Marian, he said that he was taking her off CAL-101 temporarily while he figured out what was causing the hypercalcemia. But it wasn't until after she was in the hospital that we knew she had pnuemonia also. He had said that he knew of no other patient who had problems with hypercalcemia related to CAL-101. He was just being cautious since the drug is still being studied. But I found out today that he is considering that Marian may have gotten pneumonia because of immunosuppression, and whether or not the CAL-101 was the cause of that is uncertain.

Nearly all treatments for any kind of cancer carry some amount of risk (varying degrees) of immunosuppression. And all CLL patients (whether treated or untreated) are immunocompromised by the CLL. Older patients are more fragile than younger patients and that is why I was hoping Marian could avoid any kind of harsh chemo like John had (fludrabine and cytoxan) because those drugs are very immunosuppressive. I was afraid she couldn't take that kind of aggressive treatment at her age. And that's why I was happy she got into the CAL-101 trial. Patients on CAL-101 (including John) do not seem to be suffering any serious side effects and toxicity is low. But I guess that with any therapy (particularly one that is still being studied), there are always risks. When a patient needs to treat their CLL, they only have so many options. And I felt like we were choosing one of the mildest.

I really hope treatment isn't related to this. But when it comes to CLL and all the different treatments, risks are unavoidable. She was already immunocompromised by her CLL even without treatment. And treatment decisions would be so much easier if we had a crystal ball that showed the future. One thing I do know is that Marian needed treatment for the CLL. It was just a matter of which treatment to use.
From a caregiver perspective, I'm trying to do such a good job taking care of her. I am doing my absolute best to protect her and keep her well. She had a cough before beginning treatment, but no fever and no other symptoms such as weakness or shortness of breath. Every appointment since treatment began, she has told Dr. Flinn that she feels great. The symptoms came on pretty suddenly and the hypercalcemia was the first "problem" to be diagnosed. I attributed her weakness to the hypercalcemia; especially when her PCP told her she had bronchitis. Apparently, she had pneumonia and her PCP thought it was just bronchitis. So I guess I can't be too hard on myself for not knowing. But I put so much pressure on myself as a caregiver. I keep thinking that if only I would have been more adamant about finding the reason for her cough...

However, I nagged her to death about her cough and going to her PCP for a checkup. But she didn't think it was anything serious. She said she gets a cough every year at this time and it usually turns into laryngitis. She wasn't worried about it. I should have been more persistent or made a bigger deal out of it the last time we were in Dr. Flinn's office (before she went home). But I did tell her that CLL patients had to be very cautious not to ignore anything that could turn into something more serious since they are immmunocompromised. I just never dreamed she could wind up in this condition.

I guess in reading this you can hear the battle being waged in my mind. Could I have done more to prevent this? And trying to convince myself that none of this is my fault.

I'm home now. I'm going to rest tonight and go back tomorrow. Now that she is in ICU, she is being watched so closely. I know she doesn't need me there all the time at the moment. That ICU was the nicest and most private I have ever seen. She is in good hands. I have been so pleased with the care she has received at Sarah Cannon.

I know that part of the emotion I'm struggling with right now is stress-related. I am sometimes very hard on myself and expect perfection when perfection is an impossible and unattainable goal. I just don't know how to fix that default that I tend to go into. Please include me in your prayers tonight. I need to be strong for Marian.

Long Night

This has felt like the longest night so far. It's almost 4:00 a.m. and I can't lay there anymore. I'm hurting all over. I'm not sick. It's just the third night in a row of not sleeping on a real bed and listening for any noise that indicates Marian needs help. I never did take a Benadryl. I haven't been as congested tonight.

They put Marian back on the breathing machine by about 10:00 p.m. She did fine. She stayed on it for about two and a half hours again. But she is back to the more labored sleeping, making lots of moaning and groaning noises in her sleep almost continuously this whole night.

The nurse was just in here and told me that even after using the breathing machine and being on the highest level of oxygen they can give her (without putting her on the ventilator), she has still been hovering at 92%. Right now she is at 86%. So they just gave her a little more Ativan and are putting her back on the machine. They are running out of options. I'm wondering if she is going to wind up in ICU.

When her nurse told me that the response team had just looked at her again and agreed that she needs to be back on the breathing machine, I decided I would just get up. I'm really not sleeping anyway.

There is snow all over the ground and it is still snowing lightly.

Just in the few seconds between taking off the oxygen mask and putting the breathing machine mask back on her, Marian's oxygen saturation went down to 83%.  But once she was switched over to the machine, it went back up to 88%, a few minutes later 94% and now it is registering 97%. The machine blows air in and out of her lungs and expands them with each breath. They are hoping she can stay on it for at least another two hours.

The nurse just asked if I was working and I told her, no, I'm just keeping family and friends updated on what's happening.

Sunday, January 9, 2011

Evening PS

Marian is sleeping more restfully right now. One of Marian's nurses noticed that Marian often breathes through her mouth and wondered if that might be part of the reason her oxygen level keeps dropping and then it comes up when they come in and remind her to take deep breaths through her nose. She suggested that, at least while sleeping, Marian might want to put an oxygen mask over her nose and mouth instead of just the little tips in her nostrils. She is wearing it now and I think it's helping. With the mask on, whether she breathes through her nose OR her mouth, she's getting the oxygen.

Today has been up and down. There have been times when Marian has seemed better and times when I've felt discouraged with her lack of progress. But I think possibly the sedation last night and this morning for the bronchoscopy is still working its way out of her system. And maybe that's been part of the reason she has slept so much. Lu Anne mentioned that she slept a lot more today than yesterday. Since I've been here around the clock, I think sometimes the days and nights blur together in some ways. I've seen her sleeping so much that I hadn't really thought about the amount of time she was alert yesterday until Lu mentioned it.

I look forward to seeing Dr. Flinn and also the pulmonologist tomorrow. I probably won't want to go home until both have been in and talked to us. But after that, I think I will take the advice I would give to anyone else and spend a night at home in my own bed. I only saw John for about an hour tonight because he wasn't feeling good all day and I wanted him to rest and feel better -- so I discouraged him from coming. I would have loved to have him here. I miss him so much when we have to be apart. But I really didn't think it was in his best interest to push himself.

I wanted to post one more update tonight before I try to get some rest because I thought I might have sounded kind of blue in the last one. But I'm feeling better.

Marian ate a whole Yoplait yogurt and about a third of a banana tonight. Lu has been so wonderful about bringing different things that we can try to offer Marian other than the hospital food. Most of the time Marian says nothing sounds good to her. But tonight she really did make a greater effort, which was encouraging to me.

I was just told that they do want Marian to use the breathing machine again tonight. So I'm really glad I stayed. I just feel better about being able to know immediately if she is having any distress so I can get the nurse for her. I don't like the idea of her having anxiety and being alone. They will give her Ativan again. But they are going to wait until later to give it to her since she had some sedation earlier for the bronchoscopy. They would like to make sure all of that is out of her system before they give her any more. Her oxygen saturation is hovering at 91% right now with the oxygen canula at the highest setting.

Being in this hospital room just closes up my sinuses something awful. But I guess I better hold off on taking a Benadryl if I'm going to be semi-alert when they put Marian back on the breathing machine.

Thanks for your prayers and all the sweet messages many of you have sent me.

Sunday Afternoon

Marian's bronchoscopy went fine. They washed her lungs out and took biopsy samples to determine the specific origin of her pneumonia. Those will take a while to grow and produce results. They treat different causes with different drugs, so it's important to know they are treating the infection with the right stuff. In the meantime, an antifungal was added to the three antibiotics she is already on.

Dr. Berdeja said the pulmonologist didn't see anything real bad in her lungs. They looked a little better than he was expecting from the x-rays and the ct scan. But at the same time, he said that her lungs were worse today than yesterday. And they are keeping a close eye on that trend. Right now she is on the highest level of oxygen then can give by canula (don't know if I'm spelling that right). And sometimes pneumonia gets worse -- as it's being treated -- before it gets better. So he wanted us to be prepared in case there is a sudden change. He said if she gets worse, it will probably happen fast and suddenly. So that's why he has the conversation about what to do in advance. He had to know that she wanted to be treated aggressively if that happens. Some people don't want to be put on a ventilator. But Marian just wants to get better, whatever that takes.

As of right now, there is no plan to move her to ICU and a ventilator. If she remains stable, she is fine where she is. She will only be put on the breathing machine if her condition gets worse than it is today.

When Marian came back from the bronchoscopy, she looked good. She had a couple of brief visitors. She said she was hungry for the first time. She had her lunch in front of her. And then she got a phone call. I could tell she was really enjoying talking. But I knew what was going to happen. The longer she talked, the more exhausted she became. And she didn't wind up eating as much as she might have because she expended so much energy on the phone. But she never told the person that she had just started eating. And it was 2:00 p.m., not exactly lunch time. I kept thinking, "Should I say something? Should I remind her that she is going to use all of her energy chatting and then won't have the energy to eat? Or should I just keep my mouth shut and not be bossy?"

Finally, Lu and I did both make the suggestion that she needed to finish eating and not wear herself out. But she kept talking. And she was like a completely different person when she hung up the phone. She was tired. And she said she was too full to eat any more. She is sleeping now, but restlessly. If you had seen her two hours ago, you would have thought she was doing great. But if you came in now, you wouldn't.

I was just telling my sister-in-law that I'm glad she and Jeff are here and seeing how fast things can change. It's hard for someone to understand unless they witness it themself. This morning I was so excited about today being a turn around day. But right now I'm starting to worry that she could be getting worse. Every afternoon I feel torn between staying and going home. I don't want Marian to be alone. I know she is in good hands with the hospital staff. They have been excellent. But I know I have been able to assist her and let the nurses know what I'm observing in the night by being in the room. The nurses have an entire floor of patients to care for.

I guess there is also a mother hen part of me in this situation. I know in my heart that even if someone else volunteers to spend the night, I will have a hard time leaving. I will, because I would never want anyone else in the family to think I am trying to take over or be "in charge." But at the same time I can't help feeling torn about leaving when she is not improving. I just can't help it.

I have tried to keep track of all Marian's CLL issues the last three years. I am with her at every appointment. I even have a spreadsheet of every blood test she's had since diagnosis. It kills me not to be in the room when the doctor comes so I can ask him questions and understand what's happening. I am so "hands on" and intimately involved in her care. But I constantly worry that this side of me could be misinterpreted by another family member as "controlling." I have wounds from the past that make me fear this in an out of proportion context. Sometimes I think I'm even slightly paranoid that someone will perceive me that way. But I know I can't allow myself to focus on stuff like that -- because then I make it about me. And it isn't.

Such are the rambling thoughts of a caregiver under stress. Don't read this and think, "Shari's about to crack. She needs to go home." I'm not. I'm really strong in these situations. Yes, I feel some emotion. But I get on my blog and process it. I let myself shed a few tears. I try not to totally bottle it up. And then I'm okay again.

I know that some other caregiver is reading this and going, "I know exactly how she feels." And that's another reason why I share so openly. I know how reassuring it is to have someone relate and to know I'm not the only one who feels this way.

I will keep the updates coming. Thanks again for your prayers.

Sunday Morning Update

Marian was able to tolerate the bi-pap machine for two and a half hours last night. Everyone here is very happy with the length of time she was able to use it. The Ativan helped tremendously. She was sleeping so soundly that she really wasn't aware of the machine and, as a result, she wasn't fighting it. She was relaxed and let the machine take over. (Which was exactly what they wanted her to do.)

At the two and a half hour mark, she started to lose some of the sedation effect and experienced a bit of discomfort. She was still pretty out of it, but was starting to fight the machine a little. She was moving around more in the bed and coughing once in a while. She started to shake as if she were getting hard chills. I had been watching her closely and went to get the nurse when I saw the change. The nurse said that two and a half hours was great and she was probably experiencing a mild anxiety attack because, as the sedation was wearing off, she was a little more conscious of the machine blowing air into her. It was making her restless. So they disconnected it and removed the mask. It still took a few more minutes for the shaking to stop. But she settled down and went back to sleep.

That is when I finally laid down and slept (3:45 a.m.). When she woke up this morning, I told her how great she had done and how much the machine had helped her. She couldn't remember anything except the shaking and feeling my hand on her shoulder. I told her everything that happened and she asked, "How many of you did it take to get the mask on me?" I told her just one little person and that she didn't seem to even notice it. She said, "I'd like to sleep that well every night." And she told me that she is willing to be on the machine again as long as she gets to have Ativan.

I think she seems better this morning. She's been awake a couple of times. We've talked. And then she goes back to sleep. Right now she is snoozing again. And any minute they will come get her for the bronchoscopy. She will have light sedation (like when you have a colonoscopy). And I am hoping that after she wakes up from that, she will feel like eating something. Getting her to eat and regain some strength is going to be one of our main objectives today.

I only slept about three hours, but I'm not feeling the lack of sleep so much at this point. The three hours that I did sleep, I slept hard. And I feel rested. I know it will catch up with me later. But right now I actually feel pretty good.

I am very hopeful that today is going to be a turning point for Marian.

I Can Almost Rest Now...

Without getting too bogged down in details, I wanted to share a moment of relief and celebration I am having all by myself in Marian's hospital room at 12:40 in the morning.

As you already know, Marian has pneumonia in both lungs and has really been struggling the last couple of days. She has no appetite. She feels bad. She's weak. And she struggles with shortness of breath if her flow of oxygen is interrupted for even five minutes.

Today she was seen by a pulmonologist. He is going to do a bronchoscopy first thing in the morning. And he talked to Marian about using a bi-pap machine to improve her breathing and oxygen level. She had already tried it very briefly (after it was recommended by the emergency response team). She insisted that she could not possibly wear the mask. The air flow was so strong that it made her feel like she was being smothered. Dr. O even told her that she might wind up in ICU if she refused to use the breathing machine, but he wouldn't force her to do it. And she still didn't want to. We all tried talking her into it at various time today, with no success. It obviously scared her.

Tonight after everyone else left, the lead person on the night shift emergency response team came in and talked to her again. Afterward, I walked out to the nurses station and spoke with her so I could ask a few more questions privately. She really leveled with me about the seriousness of Marian's pulmonary problems and how she could take a very sudden and drastic turn for the worse at just about any time, necessitating a move to ICU and being put on a ventilator. But if she would only use this machine, she could possibly avoid that. She told me she sees so many patients resist using it until it's too late and they have to be taken to ICU. She really believed Marian could avoid ICU by using the bi-pap machine. But she wasn't sure how long she would have the opportunity. I got the impression that this might be the last night Marian spent in a regular room without the breathing machine.

So I went back to the room and tried one more time to talk to Marian about using the bi-pap. I even asked if she would please do it for me. I told her I was so worried that she wouldn't have this option much longer if she kept refusing. And she finally said, "Okay. I'll try." They gave her a little Ativan. She fell asleep. And when the cardio pulmonary tech came to get her started, she barely seemed to notice the mask at all. She was so relaxed that she did not resist the air flow. And even when she occasionally reaches up and starts to tug at the mask in her sleep, I just say, "Marian, don't touch the mask" and she stops immediately. She is sleeping soundly and having no problems. She has been wearing the mask for over an hour. And in the first thirty minutes alone, her oxygen level went up to 99%. I was told that by using this machine she would also strengthen her lungs for tomorrow morning's procedure.

The night nurse came in to check on her a few minutes ago and was very pleased with how well she's doing. I can't begin to tell you how tired I am, but I am so excited about this that I am wide awake. I also want to stay up a little longer and watch her to make sure she doesn't accidentally pull the mask off in her sleep.

I felt very stressed a little earlier this evening. But I feel so good right now.

There are only a few people close to me who really understand how much pressure I put on myself as a caregiver. I expect perfection. So, of course, I continually disappoint myself because I'm far from perfect. Rebecca told me tonight that I don't show myself enough grace. I love her so much. She prayed for me on the phone and when we hung up, I felt so thankful for her and our relationship. I think God knew I needed someone to say to me, "I get it. I understand." And I probably just needed to cry. During the few hours I was gone, I felt so emotional.

I have spent countless hours learning about CLL, the complications of CLL and the treatment options for CLL so that I can "do something" helpful in a situation where one often feels totally helpless. My world is filled with other cancer patients and caregivers these days because of the online communities I have become a part of since John's diagnosis. Some of those online friends are also sitting in hospital rooms with loved ones or lying in ICU beds themselves tonight. I know they understand the stress I feel and the reasons I am here instead of home in my own bed. I'm not here out of duty. I'm here because I want to be. Because it makes me feel like I am "doing something" to help.

Tonight wound up being a night of personal celebration for me. I am celebrating all by myself every time I look at the clock and Marian is still resting comfortably while on this breathing machine. I helped her make the right decision. And that feels really, really good.

It is now 1:30 a.m. and she is approaching two hours on a machine they said would benefit her if she only used it for one hour. I think I can probably lie down now and get some rest myself.

Saturday, January 8, 2011

Saturday Morning Update

Marian seemed to have a more restful night. She ran a temp of 102 all through the night, but it was down to 100.6 the last time they checked. They weighed her this morning and she's lost about five pounds since being admitted. She is still on oxygen and apprently still needing it. It got disconnected for about five minutes (came loose) and she was immediately short of breath. But she was fine again as soon as we discovered the problem.

She just told me that she feels miserable for some reason. I think it's hard to stay comfortable lying in the same bed continuously.

They have a little kitchenette area on this floor where I can go get fresh ice and water any time without having to ask the nurses. There's also a coffee maker, a microwave and a fridge. I went to get her some fresh ice water just now and someone was making a fresh pot of coffee. So I will go get a cup for us in a couple of minutes. Right now, even coffee with sweet 'n low and powdered creamer sounds good to me. (I much prefer half and half and splenda, but who's complaining?)

If anyone reading this is coming to visit her today, there is one thing she needs: soft facial tissue. The hospital brand feels like sandpaper.

Later in the day, when other family members get here, I'm considering going home and coming back in the morning with John. We'll see how she's doing. I can always come back for the night if she wants me to. But she should continue to improve at this point.

By the way, she said my snoring did not keep her awake. That is a miracle. I was on a fold out bed right next to her. And I slept too. Better than I thought I would.

Thank you for praying.

Gotta go check on that coffee now.

Friday, January 7, 2011

Live from the Sarah Cannon Wing of Centennial Hospital...

For that to be funny, you probably need to hear the above sentence read by John in his professional infomercial voice.

I posted a picture of Marian on Facebook yesterday, just before they wheeled her from Dr. Flinn's office to her hospital room at Centennial. One of my sisters-in-law (Lu Anne) teased, "I can't believe you put that pic on Facebook!" And then another sister-in-law (Connie) commented, "It's just like a reality show..."

I was actually trying to lighten the moment by snapping a picture of Marian in the wheelchair. And I asked permission before sharing it. She knows I post on my blog and Facebook to keep everyone informed. And she wants everyone to know how much she appreciates the prayers and hugs that so many of you have sent to her through me!

She had an eventful "wee hours of the morning." She had sweating and then chills, and experienced extreme shortness of breath. They took her vitals and must have been concerned because Marian said that suddenly there was a handful of medical personnel responding to her condition.

Dr. Flinn had ordered a chest x-ray yesterday upon admitting her. And we were told this morning that she has pneumonia. Her high fever during the night caused the sweats and chills. And it was both the hypercalcemia and the peumonia that's been making her so weak and short of breath. On Monday she was diagnosed with bronchitis by her PCP in Evansville. But she may have actually had pneumonia all along.

When Marian called me this morning to tell me about the response team experience early this morning, I was so thankful Dr. Flinn had admitted her. And I made the decision right then that I would be spending the night here tonight. I think she's doing enough better that she probably would have been fine without me. But I wanted to stay anyway -- even if it's just for moral support. If she continues to improve and get stronger, I may feel comfortable sleeping in my own bed tomorrow night.

We still don't know the cause of her hypercalcemia at this point. Right now the first order of business is getting her over the pneumonia. The infection from the pneumonia would "light up" the PET scan, which could obscure something else. So she won't have the PET scan until the pneumonia is cleared up or almost gone. I asked this morning if the pneumonia might be the cause of the hypercalcemia and was told that it would be very unusual, but not impossible.

She has been on antibiotics, IV fluids and oxygen today. Her calcium level is down to normal. And Dr. Flinn said her blood counts look good. He told her to plan on being here until Monday. And as bad as she has been feeling, she is in no hurry to leave.

Right now she is trying to rest but feeling pretty uncomfortable. I can tell she feels worse at night. Which is another reason I thought I would just go ahead and stay.

A few minutes ago I told her,
"If you wake up in the middle of the night and need help with anything at all,
I don't want you to hesitate to wake me up even if I'm asleep.
Remember: I'm not here for a good night's sleep."

We laughed and she promised to wake me.

Thursday, January 6, 2011

A Long Day...

John and I left the house this morning at 9:30. He had a routine appointment with Dr. Flinn at 10:30. And his brothers were bringing Marian from Evansville to meet us for her appointment at noon.

John continues to do well on CAL-101. He just finished his eighth cycle. All of his nodes are greatly reduced and stable. Some of his more stubborn lymph nodes (under his arms) are still shrinking. And his blood looks great. Dr. Flinn is very happy with John's response and so are we. CAL-101 came along at the perfect time for John.

Marian has also seemed to respond well to her combination therapy of CAL-101 plus Rituxan. Her Rituxan infusions concluded at the end of November. She's had no side effects. Her white count has been coming down and her platelets have improved dramatically. However, for the last several weeks she has started feeling worse instead of better. And we know now that some of the symptoms John and I had been noticing (and attributing to age) were the first signs of hypercalcemia.

In December, her blood came back with a slightly elevated calcium level. I went online and read that hyperparathyroidism is the cause of hypercalcemia 99% of the time, so I made an appointment to take her to a specialist in Evansville the following week. I ran that by Dr. Flinn's nurse, who checked with him, and said that would be fine. But prior to that scheduled appointment, Marian began feeling worse (at home in Evansville) and Monday night she called to tell me that she was being admitted to the hospital. She had gone to see her primary care physician for her cough that morning (bronchitis) and he drew blood to check her calcium (because she told him it had been elevated). That afternoon, her PCP called to tell her to go straight to the hospital. Her calcium had shot up to 13+ over the weekend. A blood calcium level of 13 is considered an emergency situation. Hypercalcemia can be a life-threatening condition.

She was given IV fluids and Zometa in Evansville and her calcium level was stabilized. As I previously mentioned, the diagnosis was dehydration. But that didn't make sense to us because we knew she had been eating and drinking water all weekend. She was with family until Sunday night and her intake was being closely monitored by my sister-in-law.

Before she was even released in Evansville, I made an appointment for her to see Dr. Flinn today. She was discharged yesterday afternoon with a normal calcium level. But not long after she got home, she started feeling bad again. She didn't sleep well last night. She had some night sweats and chills. And she said she knew that her calcium must be going back up because of how bad she felt. She said the most minimal exertion leaves her short of breath and she felt a loss of energy immediately after being disconnected from the IV.

Dr. Flinn ordered a calcium level stat. But we still had to wait quite a while for the results to come back from the lab. When the results arrived, they showed that her calcium had already gone back up to 11.9 in less than 24 hours. And that's why he admitted her. He wanted to keep a close eye on her and keep IV fluids in her while he is in the process of locating the cause of this complication.

Through bloodwork, he will eliminate some rarer conditions that cause hypercalcemia. Marian's PCP already ruled out hyperparathyroidism. But I'm pretty sure Dr. Flinn is rechecking that, too. And as soon as he can schedule her, she will go for an out-patient PET scan. That will probably be early in the week. And until we figure out what's going on, Dr. Flinn has taken her off of CAL-101. He does not think CAL-101 has anything to do with the hypercalcemia. He knows of no other patient who has developed hypercalcemia on CAL-101. But he doesn't think it will cause her any problems to discontinue it until we pinpoint the problem. Once the cause of the hypercalcemia is addressed, she can always resume therapy with CAL-101.

In a small percentage of CLL patients, the CLL suddenly transforms into an aggressive lymphoma (Richter's Syndrome) for unknown reasons. One symptom that occasionally accompanies this transformation is hypercalcemia. From the reading I have done over the last couple of days, this transformation can be sudden and can even occur when a patient is in a complete remission. The PET scan is one of the tests that is used to detect the transformation. But this sudden change is just so hard to make sense of because she has been doing so well prior to the last few weeks. In fact, I've gotten so used to Marian telling Dr. Flinn, "I feel great" during every checkup that I can hardly believe my ears hearing her suddenly saying, "I feel terrible."

Jeff stayed until we got her settled into her room. John and I stayed until they came to take her for a chest x-ray. We hadn't eaten anything all day except an oatmeal cookie from Starbucks. And I could tell John was completely wiped out (falling asleep in a chair). We drove through Marco's on the way home. John had a sub sandwich and I got a small pizza with every intention of limiting myself to two or three slices. I didn't stop eating until I was halfway through my fifth. It's not good to let yourself get that hungry. Especially after such a stressful day.

I don't know exactly how long Dr. Flinn will keep Marian in the hospital. But I'll be spending most of my time at Centennial until she is released.

And now I must go burn some of those excess calories.

Wednesday, January 5, 2011

Yet Another Update...

Dr. Flinn called me this morning to confirm that he also does not believe Marian's hypercalcemia was caused by dehydration. He believes it was actually the other way around. He explained that dehydration does cause hypercalcemia, but hypercalcemia also causes dehydration. So it's a vicious cycle and can sometimes lead to a misdiagnosis.

Hypercalcemia in cancer patients can be a serious and significant development. Therefore, he needs to see her as soon as possible. The front office didn't realize it was an urgent appointment and they scheduled her for next week because that was the first available opening in his schedule. But he said he would work her in regardless of how booked he is. I told him we would get her there tomorrow.

A week ago, her calcium level was only slightly elevated. And then it suddenly spiked to a dangerously high level. So it is a more urgent situation at this point. I don't know what we'll find out tomorrow. I know there will be further testing of her blood and I'm wondering if she may have to have another bone marrow biopsy. She has seemed to be responding to CAL-101. Her white count has started coming down in recent weeks and her lymph nodes have decreased in size. But hypercalcemia can be a sign of disease progression in cancer patients. So I'm feeling a bit confused. I'm glad we will be seeing Dr. Flinn tomorrow.

I will post something after our visit with Dr. Flinn. I try to communicate personally with the immediate family, but it's hard to personally inform every single person who is concerned. I know many of you (friends and extended family) care about Marian deeply and want to know how she's doing. So I will keep the updates coming.

Thanks so much for your prayers and concern!

Tuesday, January 4, 2011

To Evansville and Back...

I drove to Evansville today to check on Marian. I packed all kinds of stuff, not knowing what her condition was going to be or how long I might need to stay. I wound up staying two hours and driving back.

I'm tired. But it feels so good to be home. Today is our seventh wedding anniversary and we've been together for almost eight years. So I know this sounds sappy and sentimental. But John and I have spent very few nights apart and I hated the thought of being away on our anniversary. We've already celebrated by going out of town for New Year's. It's not about going out to dinner again. I just wanted to be home tonight. And I'm thankful I could be.

Marian's calcium level is stabilized for the moment. The diagnosis was dehydration causing the hypercalcemia. I can't say I'm completely convinced it was nothing more than that. But I will take her to Dr. Flinn next week and if he says that's all it was, I'll be more relieved. I don't want to be an alarmist and turn it into something it's not. But I don't understand how dehydration could solely be the cause if her calcium has been elevated for over two weeks. It was only slightly elevated at first and then it skyrocketed. So maybe dehydration contributed to it going to the dangerously high level. But when she was here I was constantly on her to stay hydrated and drink more water. She assured me she was. Then she went to my sister-in-law's last Wednesday night and stayed through the weekend. And my sister-in-law said she ate well and was drinking water the whole time she was there. She had only been home for one night before she went to her PCP and had the blood draw that showed a calcium level of over 13 (severely high). So that is why my mind is not put completely at ease by this simple diagnosis. My brother-in-law and I were talking about it as he walked me to my car and he was still concerned as well. His question was, "What caused the dehydration if she was drinking plenty of fluids?"

Unfortunately, I didn't get a chance to ask her doctor any questions or even meet him. I have not encountered this before, but I found out Marian's doctor does not make hospital visits. She has not seen him since being admitted. They have someone called a "hospitalist" who came to her room to tell her the results of her tests. I looked up the term online and, sure enough, it's a newer trend in medicine. (I don't like it.) I'm sure the hospitalist is a qualified medical doctor. But that just seems so impersonal to me. And I didn't even get to see him because he came by Marian's room while I went to the cafeteria to get a cup of coffee. My sister-in-law was there, though, and she said he told them the diagnosis was dehydration and she would probably go home in the morning.

I felt kind of like I'd made the drive unnecessarily. But I guess it wasn't for nothing, since I'm sure it demonstrated to my mother-in-law how concerned I am about her care.

On my way to Evansville I spoke with one of the oncology nurses in Dr. Flinn's office and communicated my concerns to her. She relayed the information to Dr. Flinn and Dr. Flinn made a phone call to Marian's PCP. I was then advised that Dr. Flinn wanted her to be sent back to his office after she was stabilized. So we moved her next appointment up to next week.

The diagnosis of dehydration has not put my mind at ease. I still have questions. But I am thankful that Marian responded to the IV fluids and is stable. I look forward to getting her to Dr. Flinn next week. And I appreciate the doctor/patient relationship we have established with him. I know I will leave his office next week with a much more thorough understanding of what is going on.

It's so good to have an actual relationship with our CLL doctor. Along with being a specialist in CLL, Dr. Flinn is so caring and easy to talk to. He has never once made me feel like I ask too many questions. In fact, I once asked him if caregivers like me are a pain (wanting to know and understand every detail of my loved ones' health concerns). He assured me that caregivers like me are refreshing and he enjoys discussing the details with someone who is educated about CLL and comprehends the details he's explaining. Not that I expected him to say I was a pain, but he seemed very sincere in his response. And the way he has interacted with us -- like a friend as well as a physician -- has proven to me that he genuinely does feel that way. This is something I deeply appreciate. I also appreciate the relationships we have developed with the nurses and office personnel. When speaking with Noel today, I felt reassured that she understood my concerns and would immediately relay the information to Dr. Flinn. That was the only thing that truly put my mind at ease today; talking to Noel and knowing that Dr. Flinn was communicating with Marian's PCP.

We have received such quality, personal care from Dr. Flinn and the entire staff at TN Oncology/SCRI. Although I didn't begin writing this blog post with the intention of writing a medical review, I do highly recommend Dr. Flinn to anyone in the Nashville vicinity with CLL or any other hematologic malignancy. I've heard wonderful things about other CLL specialists in different parts of the country as well. But there are only a handful. And he is one of the best.

So, that's the latest on Marian's condition ... and mine. : )

Monday, January 3, 2011

Marian is being admitted to the hospital.

My mother-in-law is being hospitalized in Evansville tonight (by her primary care physician) for her high blood calcium. She went to see him today and was diagnosed with bronchitis. But he also drew her blood and her calcium level is higher than last week, which is serious. He told her it was an emergency situation and to be at the hospital within an hour. She wasn't sure what the exact number was when I asked. She just knew it had gone up.

I will be driving up there in the morning so I can be with her and communicate with her doctor in person, ask questions, understand the situation better, etc. I will also call Dr. Flinn to let him know what's going on. I don't even know what her MD suspects as the cause. And I feel apprehensive about her being in anyone's care other than Dr. Flinn, to be perfectly honest. In case this could be a complication of her leukemia, I wish she was being admitted here at Centennial, but I can't control that.

Please say a prayer that the cause of this will be quickly and properly diagnosed. And please also say a prayer for me. I want to be a good patient advocate without being offensive to anyone. I tend to be fairly assertive in these kinds of situations because of my concern for "my" patient and my pro-active nature.

I feel very stressed right now. I would just feel so much better if Dr. Flinn was the one diagnosing this. I don't like not knowing the details. And Marian couldn't remember much of what her doctor said other than that it wasn't her parathyroid (because her PTH was low) and it was important for her to get to the hospital quickly.

I will keep you updated as soon as I know more. Thanks for your prayers.

Celebrating the Start of 2011!

A very memorable weekend with friends!

I just finished uploading 62 of my favorite photos from New Year's weekend.
"Sixty-two!" you say? Yeah, 62 out of 170.

I love making and savoring memories. We had a wonderful weekend and I will get to relive it many, many times through our pictures. If we're Facebook friends (or have mutual friends), you can see the whole album. If not, I will share a few on my blog (in a separate blog post).

A few weeks ago I asked a friend of mine what they were doing for New Year's Eve. We didn't have any plans and I wanted to do something. I wasn't sure what. And I was thinking about having a small dinner party at our house. Karen told me she and Ricky (her husband) were going to their condo at the beach and asked if we might want to fly down and join them. I told John about the invitation and said, "I know we probably shouldn't go anywhere else so soon, since we just spent a week in Jamaica. But it sure sounds fun." He said it sounded like a lot of fun to him, too. But we probably shouldn't...

I emailed Karen that night: "Let me get back to you about your invitation. When I proposed the idea, John said we probably shouldn't ... But he didn't say no. I think he might be pondering the idea. And sometimes he enjoys surprising me with something I'm not expecting. Let's give it a few days."

The next evening, when John walked in from work, he held up a print-out of our Southwest Itinerary and -- with a big grin -- said, "Guess what I did? I booked our flight to PCB. Happy Anniversary." (Our wedding anniversary is January 4.) You could have peeled me off the ceiling. I think I jumped up and down while hugging and kissing him. I was really excited. (It's times like these when he usually says, "Don't hurt me.")

We flew down Thursday evening. Our mutual friends, Mike and Cheryl, had rented their own condo and were there as well. We visited over lunch Friday with Karen's parents (who live in PCB now). We went out to dinner on New Year's Eve at Pasta Grill (the owner and chef was once the White House Chef for President Reagan). We walked around Pier Park after dinner and listened to a couple of bands. Then we went back to the condo just before midnight. They dropped a beach ball at Pier Park and then there was a spectacular firework show over the pier at midnight. We had the best view from the 15th floor condo balcony at Calypso. So we wanted to watch the fireworks from there. We had picked out two boxes of bakery desserts after dinner and saved them for just after the stroke of midnight. All six of us could not finish the assortment of pastries. But it was fun trying.

John and I are almost always asleep by 10:30. But we stayed up Thursday night until midnight watching the "Burn Notice" marathon with Ricky and Karen. And then we stayed up till 1:00 a.m. on New Year's Eve. We were tired on New Year's morning.

We watched a little of the Rose Parade while drinking coffee and relaxing in the condo. We also watched a little football. I couldn't stand the thought of food until about 2:00 p.m. (Finally had a slice of toasted breakfast bread from Publix with a bit of peanut butter.) I was starting to feel hungry, but I wanted to save my appetite for dinner at a very special restaurant.

Ricky and Karen had told us about this amazing place they wanted to take us, called "Firefly." It is the restaurant where the Obama entourage dined while in PCB after the oil disaster. And before dinner we toured some condos. John loves to look at real estate ... especially at the beach.

John has toyed with the idea of buying a condo at the beach for quite a while, and every time we're down there he enjoys looking around. He shops foreclosures on the Internet continuously. But with the toll the economy has taken on business, we have held back. Although, there will probably never be a better time to buy. Ricky and Karen have a property management business and they manage almost twenty units. So they showed us several interiors and gave us lots of tips on the up and down sides of rentals in different locations. I know John has the bug worse than ever right now. I, who have never really had the bug, also felt slightly "bitten" after this trip. We've always stayed in Destin, but I think I like PCB a little better. And I love Pier Park.

We had several great meals in PCB. Starting with he Boatyard for lunch on Friday, followed by dinner on New Year's Eve at The Pasta Grill, and topped off by a New Year's Day dinner at Firefly. We had lunch at Dusty's Oyster Bar just before we headed to the airport yesterday. It is a local favorite and always crowded. I have to admit that I prefer The Back Porch to Dusty's. (I told Karen and Ricky they really need to try the seafood nachos at The Back Porch. They are unbelievable.) But Dusty's was good and a fun experience. I even tried my first raw oyster ever! (I don't think I will crave them, but they were not gross like they look.) I was so apprehensive, thinking I would gag, especially when they all told me I had to eat it whole and not try to take a tiny bite. But I chomped down bravely and was pleasantly surprised.

We flew home yesterday and John was talking about changing our flight and staying another day all the way up to the ticket counter. I love it when I know he is having a great time and really relaxing. None of us knows what tomorrow holds. He's been telling me since we were first together that he is working hard now so that we can have a great life when he retires. And my response has always been, "We don't know that both of us will be here and healthy for the golden years you are planning." I was saying that long before his CLL diagnosis. Because it's true. Diagnosis or no diagnosis. None of us has the guarantee of old age. It's not pessimism, it's just reality.

I'm thankful for every opportunity we have to spend quality time together as a couple and with our good friends and families. This weekend will always be such a special memory.

Thanks, Ricky and Karen. Not only for a memorable weekend and New Year's celebration, but for the gift of your friendship!

Thanks to both the Joneses, the Powells, and John ... for sharing tastes of everything on your plates.
And thanks to all for putting up with me when I ordered: "No one touch their food until I get pictures!" (When I post some pictures, I will probably include a brief review of the restaurants.)

There is no way I could have had any more fun celebrating the New Year than I did this year! But I could have this much fun again if we make it a tradition.