A Voice from Up High

The Final Entry

2011-03-21T09:56:00.005-04:00

I've been putting this blog entry off - I mean, how exactly does one end a 4-year documentary about a loved one, that had so many followers? Should I be brief and to the point? Should I reiterate everything? CliffsNotes, maybe? This is the end of a big chapter in my life. My memories, good and bad will remain with me obviously, but my journal is at a close. This will now be made into a book for Katie, my little princess warrior.

Katie was only 8-years-old when Tom was diagnosed with cancer. She has been through more in her life already, than most adults my age (I'm 41). She has witnessed a lot of raw, scary, painful times in the lives of us three. She has been there, a rock for Tom and myself. I have found a great deal of strenth through her. Many times she has been the only source of joy in my life - a little star in a big, dark, night sky. She is an amazing child and I'm positive that she will use her emotional strength to make a difference in many more lives. I am so very proud of her.

Tom, as you know had a horrible ending to his life, and I don't care to dwell on that. I do want to express my feelings for him. When we met, we were so carefree and happy. We knew immediately that we were a perfect match. Tom proposed to me six weeks after we met, and we were married seven months later (he was 26, and I was 22). Being so young and having known each other for such a brief time, the odds of a successful marriage were certainly against us. We didn't pay attention to that negative way of thinking, and instead we put ourselves through college, bought our first house, and then in year seven of our marriage we decided it was time to become parents. Katie came along and life continued perfecty over the next several years, in the fast lane of happiness.

Tom was successful in his career - always wanting to return to the office and work alongside his colleagues. He thrived on riding his bicycle and working on his "machine", as he called his computer. He was such an intelligent person (nicknamed the 'human encyclopedia' by my brother), seeming to know a little something about almost everything. He was a good father, always trying to pass on his hobbies and interests to Katie. He was a loving husband - I know he would have done anything for me. In the end, not only did he and I beat the odds of having a long marriage, but this would have been year 20!

Cancer is not only a sickness to the body, but it can spread to other areas of life, namely financial, emotional, and psychological. If I could give anybody a word of advice, should this happen to you and your loved ones, it would be to realize that it's difficult - there will be times when you are: reminescent of the old life and feel cheated, when you don't get along with your loved one, when you get along perfectly, when you worry in the middle of the night, when you worry during the day, when you can't believe how many people reach out to you, yet you still feel all alone. The illness may not get better, but it's out of your control. You can't obsess over "what if". All you can do is remain strong, try not to be angry, cherish the last minutes, grieve, and try to move on in a positive direction.

I love Tom and I miss him so much. I feel his presence. I will keep him alive in my mind and heart, and that of Katie's, as will so many others. There is no other like Tom Carter.

When I started my blog, as you will see in the first entry, Tom suggested I call it "A Voice From Up High", as he said that is how he perceived me - comforting, caring, and looking over him. Who knew that in my last blog entry that I would be reassigning that title to him, for he is now our Voice From Up High.

The Eulogy

2011-03-06T11:16:00.008-05:00

My good friend, Carla offered to provide the eulogy at Tom's memorial service. She exceeded my expectations, and I wanted to be sure I shared this beautiful sentiment with you in my blog. Thank you, Carla.

The challenge for me in speaking about Tom becomes how to cover all the things that I could say about him and not keep everyone here for days. Tom was a true Renaissance man who never ceased to amaze me with his bank of knowledge. I learned many things from conversations with him, including an appreciation of his authenticity as a human being in his actions towards others as well as the deep, personal, level he could take a conversation. Tom had so many interests, he loved his family, he enjoyed his work and the people he worked with, and he enjoyed his successes as a provider. He was creative, adventurous, athletic, a good cook, he had a spiritual side, and…he was easy on the eyes!

One golden thread in the tapestry of his life that we shared was a common interest in music. In many of our conversations, there was a musical component. We both enjoyed all kinds of music, along with playing the guitar. One great memory I have is when my husband and I had an alley party. My music partner, Marie and I decided we would provide the music, so we went about setting up amps and mics. Tom, Lisa and Katie came over and I had a couple of extra guitars out for anyone who wanted to jam. Marie and I had some music that we wanted to do and I asked Tom to join us. Much to my happiness, he jumped in and we had a great time singing and jamming together until dinner was served. Personally, I had visions of a family band in the makings. Shortly after that evening, Tom bought a Martin guitar, much to my envy and joy. He said he had so much fun that evening that he wanted to get back into playing.

Recently, I had the joy and opportunity to see Katie in a chorus concert at her school. She did a short solo and I became so excited at the beauty of what I heard from her, and her obvious interest in music. Afterwards, we went back to the house and messed around with a song that Katie liked. I promised to work on the guitar part so we could do the song together.

Two Sundays ago when I was again at the house, Katie and I worked on the song and got it to a level where we thought we could perform it for Lisa and Tom. We gathered with them in the bedroom and commenced to doing the song. It was a very special moment with smiles and tears from us all.

For me, the beauty of the moment was the realization of a reciprocation of a similar event nine years before, when I watched Tom bring a new meaning and level to singing sweet songs to his baby girl. Katie was between three and four when I stopped by one night for a visit. Beauty and the Beast was a biggie in Katie’s world, and Tom invited me to stay to hear the song from the movie, that he and Katie had worked up. Well, let me tell you, I was mesmerized….Katie dressed up in her princess outfit, crown included, as well it should be. She sat with regal countenance on her thrown, which was a bar chair, and as the music began, a demure smile crossed Katie’s face as she got into her princess character. Tom, in his character as “The Beast” began singing to her passionately, leaping across the room, kneeling before her, hands clasped in a pleading way, up again, across the room, twirling, singing to his little Princess, and it went on like that until the end of the song. Who would have thought that nine years later the roles would be reversed and his baby girl would be singing to him and creating an equally special moment?

I spoke to Tom of this memory last Saturday during some alone time that we had and it brought a slight squeeze of hand and an ever so slight downward movement to his lips which was an attempt at a smile, as he shared his happiness in this memory.

Thank you, Lisa, for your courage through this. I watched your sweet, gentle, loving care so many times and you have gained Heroine status in my eyes. You were certainly one of Tom’s main angels! Thank you for keeping the blog that became increasingly important to so many of us in keeping up with what was happening with Tom.

Thank you Katie for being his sweet baby and I will pray that your memory bank stays alive with good loving memories that you have had with your dad. You are also one of my heroines.

Thank you, Mr. Carter for having such a wonderful son who was a testament to you and Tom’s mother, as parents.

I send my condolences to his sisters and to his brother in their loss of Tom. I don’t think that time heals our wounds and emptiness, but I do believe that time simply gives us a chance to adapt to something new as we go forward.

To all of us who have been enriched by knowing Tom, we have a great example of high standards to aspire to and we have all been blessed by having him touch our lives in whatever way he did.

Tom the chef

2011-02-28T10:27:00.006-05:00

I found this picture of Tom on my brother, Kevin's Facebook page. I think Tom was preparing chicken parmesan. Here is a message I found from Kevin:

Thoughts on the best man I know.
My brother in law died this morning. I have had very few positive male role models in my life. He was the best. When I was a kid he taught me about art and computers. As I grew up he showed me what it means to be a man. I learned more from him than he could have known...

The Funeral

2011-02-28T10:05:00.002-05:00

Over a week has now passed since Tom's service, and I'm still a little numb. It was so good to reunite with so many friends and loved ones. You all helped me stay strong, and keep a smile on my face. The messages delivered to everyone from Carla, Elise, John, and Pastor Dale were touching. I heard that several others wanted to share some feelings/memories, but I guess they were not noticed in time. Katie and I were truly touched by the service.

It was so nice to arrive home from the church to a house full of family, a lovely spread of food and spirits provided by my wonderful neighbors, floral arrangements everywhere, beautiful and mild weather, Grateful Dead music playing on the deck. Tom would have had such a terrific time. I could imagine him telling stories, smiling, laughing, eating, and enjoying a beer. He certainly would have enjoyed the karaoke that spontaneously took place later on, thanks to Katie setting it all up. He always loved belting out those karaoke songs!

I'm missing him so much...reminded daily of little things I loved about Tom.

Memories from Elise

2011-02-28T09:48:00.005-05:00

Here are a few more memories about Tom - these being from his sister, Elise:

*Grandma Libby took us to Orlando to visit Disney World & Sea World on two separate occasions. Mom and Dad did not go with us on the first trip; only the second one. The first of the two trips to Florida was just Grandma Libby and 5 kids. She was a brave woman! Grandma was always worried about losing one of us when we went places and there was always, always, a centrally located spot designated as the "if you get lost or separated, go to this spot". I don't remember what it was at Sea World and as luck would have it, Granny "lost one". Here's the story.
Sea World has multiple tanks with all types of aquatic life. Naturally, there was a tank with dolphins where you could purchase a little carton of these tiny fish to throw into the dolphins' mouths. Tom was fascinated with feeding the dolphins. We all got to do that and then moved on ahead to other things. We paused for some refreshments and Tom was allowed to leave the Carter "huddle" to purchase a cold treat. I believe he was told to come back to the same area or meet us at the next tank or something like that. After a while, Grandma Libby did a "head count" and realized Tom was not with us. Mike, the oldest sibling in the group was promptly dispatched to find young Tom. And where did you think he found him? Tom took the money Granny had given him and went back to the dolphin tank and bought more dolphin food. And, that is where Mike found Tom; leaning over the side of the dolphin tank tossing in those little fish. Boy, Grandma Libby was so upset with him, but after she calmed down, we all had a good laugh! Grandma Libby wore herself out trying to keep up with us all and that incident is also the reason why our Mom and Dad were required to go on the next trip.

So...for the rest of our lives, anytime someone goes missing or we don't know what's up or we just want to disappear for a while, the code words are "gone to feed the dolphins."

*There were so many times I can remember Tom launching into one of his "Robin Williams" tirades. He would talk so fast and furious that it could sometimes be hard to keep up, especiallif he was imitating the character "Mork" from the Mork and Mindy show.. I can still hear him say "na-noo, na-noo!" He could also imitate "Steve Martin", which would be equally hilariously. He would have us rolling.

*Grandma Libby sent us to summer camp, which was sponsored by her church, Bull Street Baptist. It was a two-week session, with the first week being at the Savannah location and then, for the second week, we were going up to Toccoa GA near the big GA Baptist Convention Center. I'm not sure what the attraction was for Toccoa but that was the plan. As the departure date for Toccoa got closer and closer, Tom began to experience the worst stomaches. They tried to make Tom feel better in the infirmary, but....strangely...nothing worked. Grandma Libby was called and she drove out to the camp to pick Tom up and take him back home with her. She did check in with me but I was all excited about the bigi bus trip and all that other mess; I was older so I guess that made the difference. Anyway, as the story goes, Grandma LIbby gets home with Tom, and Grandaddy Carter was none too happy. He picked on poor Tom saying he was just homesick and that Grandma Libby should have left him there. Then came the hamburgers. Grandma Libby made some of the best hamburgers in the world. When she asked the sickly Tom what he felt like eating, he said hamburger. If I remember correctly, Tom consumed at least two of those hamburgers and amazingly, did not get the least bit sick. Grandaddy Carter huffed and puffed and said that anybody that could eat like that didn't have stomach problems. It was funny, but as usual, Grandma Libby didn't mind. She loved having any of us around. On Sundays, after church, there were trips to Krispy Kreme or Baskin Robbins. Sometimes Grandma Libby would take us out to lunch after church adn we'd meet up with some of her church friends. I remember one lady in particular, Miss Mary Dewberry!! What a name!

*Back home, it was a never ending battle to control of the television selections. We only had 3 channels so I can't imagine how much fighting we could get into over what to watch. BAck then, though I hated Star Trek and it used to make me so mad if he got to the tv first. I am a big Trekkie now but it is partly as a result of that forced brain washing, having to watch it with Tom.

*Tom was a picky eater. If Dad was home and Tom didn't eat his dinner, Dad would simply tell Tom to go to his room. Somehow, Tom was getting peanut butter and jelly sandwiches smuggled to the room. I cant remember if Mom was doing it or if Tom was sneaking out after the kitchen area was clear and getting it himself. There were definitely occassions of finding PB&J scraps on a plate under his bed.

Online obituary -- www.southcarecremation.com

2011-02-24T11:20:00.018-05:00

Thomas A. Carter 6/2/1965 - 2/11/2011

Mr. Thomas A. Carter, 45, of Roswell, died Feb. 12, 2011. A memorial service will be held on Saturday, Feb. 19, 2011 at 1:00 pm at Trinity Lutheran Church, 1826 Killian Hill Road, Lilburn, Ga 30047. The family will receive friends at SouthCare Cremation Society and Memorial Centers, 2260 Old Milton Parkway, Alpharetta, Ga 30009, on Wednesday, Feb. 16, 2011 from 7:00 pm to 9:00 pm. Those wishing to make a donation, please make donations to main.acsevents.org/goto/troopers. Arrangements by SouthCare Cremation Society and Memorial Centers in Alpharetta. (678) 735-5500.

Visitation
Wednesday, February 16th, 2011, 7:00 pm
Southcare Cremation Society and Memoiral Centers
2260 Old Milton Parkway, Alpharetta, Ga 30009
678-735-5500
Service
Saturday, February 19th, 2011, 1:00 pm
Trinity Lutheran Church 770-972-4418

February 14th, 2011
Our hearts and prayers go out to you. We met Tom through our son Mark Connell and everything we knew of Tom was all wonderful. It was our blessing to have known him.

- Mickey and Lesslie Connell, Ringgold Georgia

February 15th, 2011

This has been one of the saddest times of my life. Words will never express how I feel.

- Bruce Henry, Lithonia, Ga

February 15th, 2011
Our thoughts are with you Lisa and Katie. Tom will be missed greatly. It was an honor to have had him as a friend so many years.

- Wendy Chaney, Athens, Ga

February 16th, 2011
Sadly, I never met Thomas but did communicate with him via email about his love for military history and my work on our common Carter family ancestry.

Being a first cousin to Tom's father Richard, my wife and I offer our prayers to Tom's family and we pray that God will provide the special comfort and healing to you in the coming days.

- Bob and Flora Carter, Greensboro, NC

February 16th, 2011
Lisa, I have only known you, Tom and Katie for a short time and hope we can have many more years of friendship, and love growing strongly. Tom and I had a lot of conversations in his time of illiness and he told me stories about his childhood and his adult life with you and Katie. And there is one thing I am sure of, his love for you and Katie was a very strong love and you will have those memories forever. We love you dearly, The Lady That Sells The Peanuts.

- Eloise, Snellville, GA

February 16th, 2011
Lisa, Megan & I (former Laurian Park neighbors) were so saddened to hear of Tom's passing. I always loved it when I'd look out on the street and see Tom weaving down the hill on his longboard! It was like he was soaring to his own rhythm.

We are holding you and Katie close in our prayers.

- Dick Saunders, Roswell, GA

February 16th, 2011
I'm gonna miss my brother terribly. His love of life and God's creations will forever remind me of how preious life is. My outpouring love and support go to his courageous wife Lisa and daughter Katie. I love you both tremendously!

Love ya,

- Elise Clark, Ocean Springs, MS

February 17th, 2011
Lisa and Katelyn,

I am so sorry for your loss, I went to school with Tom at Waycross High.

- Renea Sapp Taylor, Blackshear, GA

February 17th, 2011
Don't remember if I ever met Tom or not, but I am a first cousin of his dad Richard & also sister to Bob Carter & Beth (Carter) Flynt. May God bless & comfort you in the days ahead. Our prayers are with you.

- Al & Marilyn (Carter) McDonald, Radcliff, KY

February 18th, 2011
Lisa,

I am sincerely sorry to hear of your husband's passing. I truely pray for comforting for you and your family. Say hello to Carla for me and hoping she is well.

- Doris Mclendon, Decatur, Georgia

February 18th, 2011

Lisa, Katie,

I am shocked and saddened by the news of Tom's death. He was an extremely special, creative, and talented individual. I know his fight was living hell, and that he fought it with humor and grace.

I am glad to have known Tom and you both. You will need strength for the road ahead. Life is tough, and I will be there for you both, as I still ache every day for the loss of my own beloved husband. Hold on to each other. Comfort is hard to find. You still have a life ahead of you; you must make it precious.

- Ellen Grubbs, Decatur, GA

February 18th, 2011
My thoughts go out to you and I am so sorry for your loss. Tom was a one of a kind and there will never be another one quite like him. I can't even begin to put into words the amount of loss I feel over losing my best friend that I've known for thirty-two years now. He will be forever in my heart as I know he will be in yours.

- Eric Chaney, Athens, GA

February 24th, 2011
Tom was my son-in-law. Tom gave Lisa a ring on 3-22-91 and that October they were married at our house. Thus I gained a son and friend. Over the years we became closer. I could call him anytime and listen to him tell his stories--I never tired of them. He came to every cookout, 4th of July celebration, birthday and Christmas. I watched as he bought his first house,graduated from school, learned the computer, became a Dad and raced his mountain bike. He was a very creative and special person who touched us all. I still think about him daily and still have to wipe away the tears. I'm having a hard time getting over this. I will miss him forever. I really loved him.

-Jan Henry, Lithonia, GA

Memories from Ron

2011-02-22T19:25:00.003-05:00

I received the following message from an old friend, Ron - a colleague of Tom's from one of his first jobs in the "professional world":

Lisa and Katie,

I am so very sorry to hear about Tom's passing.

I realize I can't imagine what a time you've had, and are having. Thank you for sharing so much of what you've been through on your blog.

In light of your request for stories about Tom, I have a couple.

Tom and I earned our friendship. We were coworkers at BellSouth who didn't know each other particularly well when we were assigned to build a web site together (BellSouth.net's business-products web site). I was the programmer, he the artist; my job was to build the site, his job was to make it look pretty, effective, and functional. Together, our job was to design and organize it.

I remember there were about 3 days where we had a steadily-building professional argument, both of us increasingly frustrated with a communication we knew should be going much better than it was. He had never built a web site of the type I thought we were designing; I'd never worked with a real artist (only a fake artist, i.e., myself). We both had lots of experience in our respective fields -- we were both good, and knew it about ourselves and each other. That's why we were confused and frustrated. We both felt: I know how to do this, and I know *he* knows how to do this. Why can't we get it worked out?

It boiled down to this: I was writing a computer program. He wasn't really building artwork for a web site; he was building artwork for a *computer program*, which would *use* that artwork to build a web site. Computer programs (um, and their programmers) are... let's say... finicky. Computer programs (ahem, and their programmers) expect the world to provide conveniently-sized little pieces of artwork in a predictable, unchanging way. Tom had never worked with such constraints, or needed to; he's a powerful, skilled artist, who mastered building Web sites early and quickly. There was nothing he couldn't design or build. So he didn't know what I was asking for, or why I was asking for it. Similarly, I couldn't quite grasp why he didn't know what I was asking for, because the things I needed seemed "obvious" to me. (They weren't obvious, of course, but I felt they were.)

We had a couple of knock-down drag-out conversations during those three days, and eventually came to an understanding of what we both needed to do to get the site to work. It was settled. Clarified. But we were still a little het up from that interaction.

And then, two days later, he came literally bounding, bouncing into work, grinning his head off, more like Tigger from Winnie-the-Pooh than anyone I've met. I believe it was the middle of the morning, or perhaps early afternoon -- I think he'd taken you in for a checkup. And, exuberantly, he told the following story: "Ron! Ron! I had a revelation last night! It's funny -- I really saw this in a dream! Lisa and I were sleeping. You know Lisa's pregnant, right? So in my dream, we were sleeping, just like we were in real life. But then I floated up above my bed, and looked down on the bed, and saw a grid of HTML table cells covering the bed! I was in one cell, and Lisa was in another cell. It even had a merged table cell between columns 2 and 3 where Katie is, where Lisa's belly was sticking out. It was awesome! I finally get it!" (Maybe that's not exactly what he said. But that's how it stuck in my head.)

After that, he and I always had big grins when we saw each other. We’d built a bridge. We were no longer merely coworkers who respected and liked each other; we were, suddenly, friends. The rest of that project went *very* smoothly, and every project after that. Talking and working together became decidedly *fun*. We were able to communicate as well as brothers, both because we'd actually learned to speak each other's language, and because we'd cut our teeth on the same very challenging emotional and technical situation.

I was also aware that he'd shared something very personal with me. I was, and remain, honored and humbled. How is it that a conversation with me had become part of his dream about his wife and daughter, part of this tremendously tender and iconic moment?

Much of my friendship with with Tom is embodied by that situation: the fact that he'd share such a personal story with me; his excitement and pleasure at making such a mental and professional breakthrough; his sense of irony that a computer concept could be "revealed" in a dream; the fact that our conversations and struggle to work together had had such a deep impact for him; and the fact that working through that situation made us friends.

The other core image I have of Tom is of his telling the following story.

He had a teacher during high school who was both a farmer and a physicist. As I recall, the teacher would invite the kids to his house, where they'd stare up at the stars or the sky and talk about what was literally going on in the universe, as best science knew at the time. When Tom told this story, he would adopt an extra-heavy Southern accent -- his teacher's accent -- and talk about black holes and Einstein's theory of relativity and Newton and Galileo and laser optics and gravity. And then, in the middle of a sentence, Tom, still playing the role of the teacher, would cut himself off: "now, y'all'll have to excuse me... I have to go feed the chickens." Then he'd half-limp off stage (out of his cubicle), as he left the kids to ponder the stars while he went around back to the chicken coop.

Tom's telling of the story seemed to say: this very smart man, this very good teacher, was from the deep South; he was a farmer who loved and respected that part of his life, and could have had a happy life doing just that. And yet, without giving that up, he became a physicist, and could excite other people in science and astronomy and seeking truth and understanding the world and the universe. He put the responsibility of feeding his chickens above the social nicety of being a host, and showed that to the kids. I felt that Tom was empowered and excited to have been part of that, to have had his mind expanded by this man who had raised himself up, and who was so warm, and such a good teacher, as to make his students part of his family.

I appreciated that Tom kept striving for understanding the world, the universe, his place in it. His humility. His shockingly high skill with pen and paint and computer art, doing very good work very quickly. His ability to do deep, conceptual abstract paintings as well as clean, professional business graphics, and how he seemed at peace with both of those being expressions of himself. His enthusiasm for the things which excited him -- biking, Aikido, his new computers. I appreciated that he got so much into Aikido; I was very interested in Aikido too, at the time.

It's important to me that I have grown as a person, a professional, and a friend with him and because of our work and fun together.

I do not dismiss Tom from my thoughts. He's still here, he's part of my life, despite how little we've talked since I left town 12 years ago.

Losing him hurts.

Please feel free to contact me at any time, now or in the future.

I wish you both, and your combined family, the very best.

Ron

Major Tom

2011-02-19T00:37:00.005-05:00

Tomorrow, Saturday, is the funeral. I went and picked up "Tom" at the crematorium today. He is still strapped into my backseat. Such a strange feeling having Tom in a cardboard box (urn inside).

Here's to Tom

2011-02-17T08:44:00.017-05:00

Thanks to everyone who came to the viewing last night, and thanks to everybody else, who I know were with us in heart and spirit. It was good to see, and a great way for me to take my mind off of everything (there are many little tasks to do when one's loved one passes away). I've read all of your comments on my blog, as well as Facebook, but talking in person was very uplifting.

I realize some of you may be having a difficult time, but I hope that eventually you will be able to release your sadness to the best you can, and instead be relieved and joyful that Tom is no longer suffering. As you know, I was with him during his illness for the last 3.5 years including the last month, when his existence changed into an unending suffering, from which he seemed to have no relief. Even though it hurts like hell to have to part with him, I can't tell you how glad I am that he is comfortable and has moved on to a peaceful eternity.

Tom has told me in the past on a few occasions that even though death is difficult to understand and comprehend, he wanted us to try and be resilient rather than sad. He actually said that he wanted us all to have a party, drink some libations, listen to some Grateful Dead, and celebrate his life. Here's to Tom!

Official times and dates

2011-02-14T21:15:00.004-05:00

Here are the official times and dates for Tom's memorial service and viewing:

Viewing - Wednesday, February 16th, 7:00 - 9:00

SouthCare Cremation Society (Please use valet parking located in back of building so that there will be enough parking for everyone)
2260 Old Milton Pkwy
Alpharetta, GA 30009
678.735.5500

Memorial Service - Saturday, February 19th, 1:00

Trinity Lutheran Church
1826 Killian Hill Rd.
Lilburn, GA 30047
770.972.4418

Wednesday's viewing

2011-02-14T10:17:00.004-05:00

I can provide you with the time of the viewing, which takes place on Wednesday, after I finalize the details with the crematory director today at 1:00pm.

Thanks to you all for so many wonderful and inspirational comments. I always knew Tom had lots and lots of friends, but I am overwhelmed with how many people have reached out - people I never had the opportunity to meet - those from his childhood, and different jobs he's held in the past, and bicycling acquaintances, etc.

I was so fortunate to have him as my husband for 20 years.

Love to you all,
Lisa

Speakers

2011-02-12T22:15:00.004-05:00

If anyone would like to share a story/memory, or a few kind words about Tom, at his memorial service on Saturday, please let me know. That would be a great way to lighten a solemn event - the more, the better.

Arrangements

2011-02-12T21:57:00.004-05:00

The arrangements for Tom's memorial services:

Viewing: Wednesday, February 16th - time to be announced

SouthCare Cremation Society
2260 Old Milton Pkwy
Alpharetta, GA 30009
678-735-5500

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Memorial Service: Saturday, February 19, 1:00 pm

Trinity Lutheran Church
1826 Killian Hill Rd.
Lilburn, GA 30047
770-972-4418

Good-bye, My Love

2011-02-12T17:32:00.003-05:00

Tom passed away this morning at 10:20. My mom and my friend Carla were in Tom's room when we arrived. Katie and I got lost on the way to the hospice which put us about 45 minutes later than we had planned on arriving. We walked in, hugged him, kissed him, talked to him and made sure he knew how much we loved him....he passed away five minutes later. He waited for us to arrive.

God, I miss him.

Hospice

2011-02-11T21:30:00.005-05:00

Tom was moved to hospice this evening - Hospice Atlanta. The doctor at the hospital suggested doing a liver biopsy and then another lumbar puncture - both very painful procedures. I elected not to. When I walked in today and saw Tom struggling with his breathing, eyes closed, mouth wide open and drooling, I decided that Tom didn't need all of that. Even if these procedures had pinpointed the issue, Tom was already in a no-win situation. A liver transplant and chemotherapy would have taken his life. I want him to relax and be as pain-free as possible. The doctor agreed in a roundabout way, as they are not permitted to speak their feelings (I've learned that over the past four years). I know deep down that he agreed with my decision. He said he was surprised that Tom has made it this far.

This was the most difficult decision I have EVER had to make. Even though I know I made the right decision, it is still a very troubling feeling.. Tom has been in a coma before (mentioned somewhere in a previous blog entry a couple of years ago), and made a remarkable recovery. This experience is nowhere near his condition at that time. He was able to walk, and eat, and talk, and drive, and maintain personal hygiene after coming out of the coma back then - he was self-sufficient. He honestly can't do anything right now.

Tom is in a much more relaxing place. His room is lit by calming lamp lighting, his "hospital bed" is much softer and lower to the ground like a normal bed. There is soft, soothing music playing very quietly, and there are accommodations for loved ones. The doctors and nurses are wonderful. This is the best place Tom can be right now They will give him enough Morphine to keep him pain-free, yet not so much as to put him in a complete stupor.

Katie and I are really struggling, but we are there for each other. If she's not crying, I am, and vice-versa. We comfort each other the best we can. It's good to have someone who knows exactly what you are going through. We share the same pain and share the same fond memories.
I have photos from today, and will post them later.

ICU photo

2011-02-11T07:18:00.005-05:00

I decided to remove the latest photo of Tom, from my blog. It was disturbing my brother-in-law, and probably a few others. He is going through I great deal of emotional pain, as are all of us. I don't want to do anything to exacerbate that.

My reason for posting that picture was to let you see what I see every day. What Katie sees. What family sees. Some of you may want to visit - some of you may change your mind after getting a glimpse on my blog. Some of you may be thanking me in your minds, for sparing you the shock.

I love Tom and I love my family and my friends. I wouldn't do anything to intentionally harm you.

I may post it at a later date, before I publish my blog into a keepsake book for Katie. I'm praying the book will have a fairy tale ending.

Love,

Lisa

Day 2, ICU

2011-02-10T20:25:00.008-05:00

When I arrived at the hospital I was a little excited. I was in a mindset that he was doing better. Let me tell you, I was shocked when I walked up to the door and was approached by his nurse. She asked me if he had a living will. I said yes, and she told me I should bring it with me the next time I came for a visit. The doctor told me later on that it was just a precaution - best to have it on file than be unsure of what to do in that situation. Believe it or not, that is the third time in the last four years that I've been told to bring the living will. On the two occasions before this one, a pastor came to visit us in the hospital room unexpectedly - now if that doesn't scare you, I don't know what will!

Photo removed

Tom looked nothing like I expected. He is still hooked up to all sorts of tubes. He still looks uncomfortable and exhausted. I know in my heart that he is ready to let go whenever his mind allows. He doesn't want to exist in this condition. It is so painful to see him like this. I wish I could help him get to a more comfortable place, whether it be at home by a cozy fire in his slippers, or in a place where we will all reunite one day.

New Skin

2011-02-10T12:17:00.008-05:00

I called Erin a little while ago to check on Tom. He is still in the Intensive Care Unit, and he does have a full-time "sitter" to make sure he doesn't pull any tubes out of place - either that or they'll need to tie him down.

Erin's update is as follows:

1) the infectious disease doctor saw no infection in Tom's spinal cord or brain

2) the nurses changed the dressing on Tom's scab and Erin said that the nasty skin has mostly "come off" and there is now fresh skin

3) Tom wants water but he can only have ice right now (I don't know why)

4) he's saying a few garbled words here and there - usually when Erin intentionally tries to irritate him

5) the doc ordered an x-ray of his lungs to see if there is any fluid present - the results are not yet available.

We aren't sure why he sleeps all the time. I'll find out when I return later this afternoon.

Good Morning

2011-02-10T07:57:00.008-05:00

I've just returned home after a long, restless night. Tom was experiencing some pain, and was asking me where he was, and why he was there. He said he was cold and wanted to be in his own bed. He said he couldn't take it anymore. I asked the nurse to relieve his pain a little but she said all she could do was to give him and anti-anxiety med to relax him a little.

The nurse woke me up around 6 and told me that she was going to secure a sitter to watch Tom 24/7. She said he pulled his feeding tube out a few times during the night and that she felt that he didn't know that he was doing it. Although he was pulling with his hand, he didn't know it, he was just making himself comfortable. It's dangerous because the tube has to be reinserted each time and the tube could crimp or not reach it's intended destination inside his body. They can't take an x-ray everytime he removes it, obviously.

My sister-in-law, Erin is visiting from Spartanburg. She and I are taking turns staying with Tom. I should take this opportunity to thank our families. Tom's father and step-mother have stayed with Tom almost every day for the last four weeks, while I was at work. My mom has also visited and brought him things to make him more comfortable. My dad has been supportive and was present the last time Tom was taken to the hospital via ambulance. Every single member of our families wait with baited breath for any ounce of information, and any chance to assist us. Thanks everybody - we couldn't do this without your help. We love ya'll!

One more person to thank - Katha Stuart. Even though we aren't family, she helps us out as if we were such. She is there on the spot whenever we call upon her. As I mentioned yesterday, I was so worried about Tom. I called Katha immediately and asked her to bring Katie to the hospital. Once there, she offered to take my leave forms downtown for me. She is such a big help, especially when it comes to Katie. She takes Katie under her wing and treats Katie as if she were one of her own. Thank you, Katha. You are a Godsend!

Coming around

2011-02-09T21:59:00.004-05:00

I left the hospital for a couple of hours - the visitors have to leave during certain blocks of time during the day, including each night from 6:30 - 9:00. When I came back, the nurse gave me a short update. She said that Tom will be getting a brain scan in the morning. She also said that they have stopped giving him pain medicine all together. I think the pain medicine was a big part of the problem with him being so distant. He is much more responsive. Still difficult to understand and tired, but definitely more alert. I'm spending the night, so tomorrow morning I'll let you know how everything went.

Intensive Care Unit

2011-02-09T17:11:00.004-05:00

When I arrived at the hospital late this morning (I was sick the first part of the day), I broke down and cried. I immediately called our good friend Katha Stuart, and asked her to get Katie out of school and bring her to the hospital. I swear, it looked like we were about to lose him. He was so out of it. He had an oxygen tube as well as a feeding tube, and he was just lying there with his dried up mouth open and his eyes open in little slits. He came to, slightly, and told me he was cold. He was VERY difficult to understand - lots of mumbling. I put every sheet, blanket, and towel on him that I could find in the room.

I talked to him, even though I wasn't certain that he was even aware of my presence...I spoke sweet nothings, small talk, memories, etc. He started mumbling: first he said he was dying, then he said that he felt like a Native American, then he said he was a Hindu something or another, and he said that he could see the Leader of the Universe and that he (Tom) was walking in a "creative circle". It sounded like he was hallucinating.

The doctor of infectious disease stopped by and was concerned about Tom's mental status. He was afraid that Tom may have an infection that has spread to his brain. Shortly after he left to consult with a couple of other doctors, he returned to tell us that they needed to move Tom to the Intensive Care Unit. They said that it would benefit him more because he would have two dedicated nurses, meaning his own personal nurses, if you will. No more pushing a button and waiting for a nurse to arrive, as is the case in most hospital rooms.

The ICU is so much more streamlined, clean, and staffed with seemingly more knowledgable people. On other floors, if you ask a nurse what's going on, she will most likely tell you that she's not sure, but that the doctor will be making his/her rounds later in the day.

The last doctor I spoke with said that he would know more information after the results from the spinal tap that poor Tom had to endure this afternoon, were available. He is testing for abnormal cells/leukemia in the spinal cord and/or brain. He also said that Tom may have meningitis of the brain. He said that Tom should never have stopped taking his chemotherapy and antiviral meds, and that he was supposed to have taken them forever. I don't recall that being the case, however Tom did get to the point where he threw his arms up in frustration and said, "to hell with it - I'm finished taking this poison every day." The doctor said that he was "amazed that Tom has survived this long without taking those meds, because he had the most severe form of leukemia - Adult Acute Lymphoblastic Leukemia - and was suseptible to illness/viruses".

Bottom line: Tom's mental state is not good. He isn't present, mentally. If you visit, he will not respond. If he does, it will be for a couple of seconds and then he will be out of it again.

It's very disturbing. Katie and I had some private emotional time together, alone in the room with Tom.

The Dark Knight

2011-02-08T19:48:00.004-05:00

It's 7:50pm and I'm just getting home after visiting Tom for a few hours. I had to work until 4pm. It's very difficult to be at work, thinking about Tom and what pain and suffering he is experiencing. I'm trying to get my papers in order - signed by the doctors - to be eligible for Family and Medical Leave. There are so many doctors, that it's difficult to get one of them to take the time to fill out six documents. I'll admit, that's a lot of paperwork for anyone. Hopefully, one of the doctors on call tonight will complete the forms and I'll have a nice surprise waiting for me when I make my morning 5 minute visit on the way to work. Once I have the Family Leave in place, I will be able to spend all the time I want with Tom every day.

Tom is pretty much out of it. He has to control his pain with heavy sedatives, which knock him out. A dermatologist saw him tonight and explained to me how he planned on helping Tom's wounds heal. He is going to use vaseline and gauze to protect his extremely sensitive shingles. He has large, open, oozing, blisters that are sensitive to air and toilettes. Vaseline sounds strange in that it seems that it would prohibit the blisters from healing. I guess they heal from the inside out.

The stem cell doctor also visited. Tom can't stand him - he feels that all of his trouble started with this doctor because he was the first one to advise Tom about transplants. Tom has said that if he could rewind life he would never have undergone the stem cell transplant. He remains frustrated that he didn't get a second opinion when he first found out he had leukemia. When this doctor walked in he asked Tom if he remembered him. Tom said, "Yea, like a dark knight". The doctor, a very serious man said, "Well, I don't know what that means". Tom was drugged when he said that.

Anyway, the transplant doctor said that although he doesn't think the leukemia has returned, he still wants to get a blood sample to test for traces of it. He was more concerned with Tom's liver problems, as well as his deterioration. Tom wasn't able to lift his leg more than a couple of inches when the doctor asked him to show how much he could lift it.

Finally, the doctor (not a specialist) who consulted with Tom today, said that Tom will remain at Northside for "quite some time" and that he "won't be leaving anytime soon".

Update

2011-02-07T16:49:00.004-05:00

The doctor made her rounds just a little while ago. She wasn't concerned about the possibility of cancer, she was mainly focused on Tom's liver enzymes and the count being so high, as well as the huge scab from shingles. He had one of his burning episodes while she was in the room, and she put him on a stronger pain medicine immediately. She said he's wasting away, as if his "body has given up" (those were her words). She is going to schedule a few different people to come talk to Tom tomorrow morning: a nutritionist, a dermatologist, a physical therapist, and an oncologist "just in case". I asked her why Tom was moved to the oncology floor, and she said she didn't know "probably because he has a history on this floor". After I hear what those medical professionals have to say tomorrow, I'll be able to relax...

Full circle

2011-02-07T14:23:00.001-05:00

Tom has been moved to the oncology floor - the 3rd floor, which is where we first received the news about Tom having cancer. We havn't talked to a doctor, and the nurses aren't providing any information. I'm very worried....

Talk about forgetful!

2011-02-07T14:12:00.002-05:00

I was so tired this morning that I went to N. Fulton Hospital. I lugged my heavy computer bag up to the second floor and looked around for room 268, as that is where the nurse told me he was, on the phone this morning. Well, there was no room 268. I asked where Tom Carter's room was. They looked at a list of patients and informed me that they had no 'Tom Carter' listed as a patient. All of a sudden I realized that I was at the wrong hospital! I guess my lack of sleep caused me to forget that I had left Northside late last night.

Thank you, John Reid

2011-02-07T12:50:00.005-05:00

Yesterday, a good friend of ours, John Reid, called me to find out what was going on with Tom. After I filled him in on everything, the hospital discharging Tom too soon because of Tom's lack of insurance coverage, the amount of pain Tom was in, how much work it was for me, etc., he got very frustrated and angry with the way Tom was being shuffled around. He suggested I call an ambulance and take him back. By the time he would be discharged the second time, the insurance would be in place and he could be placed in the transitional nursing facility like those hospital doctors originally wanted to do.

Shortly after we ended our call, my father-in-law called and suggested the same thing. So I called an ambulance and had him taken back to North Fulton. I didn't know which hospital to take hime to - N. Fulton, who had discharged him too early, or Northside, which is where he has been treated over the last four years. I chose N. Fulton for the fact that they had the most current records on file for Tom, and the fact that they wanted to place him in a transitional facility. I didn't know how Northside would feel about a facility.

The nurses in the emergency room at N. Fulton where very surprised that Tom had been released without an anti-biotic for his shingles. One of the nurses said that he was also released from the hospital with elevated liver enzymes and no medicine to treat it - said that was dangerous. Once again, this hospital, N. Fulton discharged him in a poor condition.

I took him to Northside and waited with him in the ER for a few hours. I finally had to leave because it was 1am and Katie was at home alone, sleeping. She would rather stay alone than with friends - she's hard to figure out sometimes. When I got home I quietly went to her room, turned off her bedside lamp, curled up with her, and fell asleep.

Medicine = $$$

2011-02-07T12:45:00.003-05:00

As I stated in one of my blogs earlier, there is a short gap in Tom's healthcare coverage (a couple of days). I was given 5 prescriptions from the hospital to get filled. Without insurance, the Kaiser pharmacy (his insurance carrier's pharmacy) was going to charge me $770. The pharmacist took me aside and suggested I get the prescriptions filled at Walmart. So, I drove down the street a couple of miles to Walmart and was quoted $268 for the same prescriptions. I saved $500, thanks to that kind pharmacist!

Medical Insurance

2011-02-05T21:39:00.006-05:00

Wow, so much has happened since Friday, that I hardly know where to begin. Tom was discharged from the hospital Friday afternoon, which was somewhat of a shock to his father and me. The day before, we were told that he needed to be in a transitional type of nursing home, because he was not ready to be at home just yet. As it turns out, Tom was discharged because of medical insurance discrepancies.

Tom was officially terminated as of January 3rd - his employer finally had to let him go, after 3.5 years of long-term disability. His medical insurance coverage was still available to us, but at a very steep premium - $1,100 per month for the three of us, or $400 for Tom alone. We chose to keep Tom on his former employer's insurance plan because we were worried about the possibility of pre-existing medical conditions not being covered under a new insurance policy. So, Katie and myself will be covered by my employer's plan, and Tom will remain on his employer's plan.

Anyway, there is a temporary gap between the time that his insurance will be reactivated under the plan for terminated employees (called COBRA), and right now. That being the case, the hospital was not able to allow Tom to stay any longer. They needed proof of the insurance that was about to be re-established, but had not yet done so. Also, the nursing facility would not even consider taking a patient who did not have proof of insurance. The hospital did not admit all of this, but it is quite obvious that this is all true, after 1) trying unsuccessfully to convince them that Tom was not ready to come home, 2) being told that the insurance is not active, and 3) the fact that just 24 hours prior to his discharge, the doctors didn't think he was ready to go straight home. They sure changed their minds in a big hurry when the insurance stuff became part of the equation.

So Tom was discharged Friday night. A very large man (an employee) had to literally pick Tom up out of the wheelchair and place him into the front seat of my car. When we arrived home Tom's dad, Richard, and his step-mother, Eloise, and I had a huge struggle getting Tom out of the car and up two steps, and into the house. We tried getting him to hold onto a walker, but he couldn't support his own weight, so we brainstormed a little and decided to try using a swivel office chair. We lifted him onto it, and then the three of us lifted the chair with Tom on it up the two steps, wheeled him into the house, and helped him plop down on the couch. That was a very difficult endeavor for all four of us. His dad broke down when it was all over and had to leave the room.

The three of us know that Tom should NOT be at home. This is too much to handle. Tom has to wear diapers. He can't control his bowels. He can't roll over. His shingles are incredibily painful to say the least. He yells out in so much agony. He takes a very potent pain killer, but it does not help consistently because it is not a time-released medicine. He can't walk at all. He can hardly stand. He's not eating. He sleeps a lot. I can't get him to and from the shower. It is a huge job.

A friend of ours named Jim (a previous neighbor) came by to assist me in getting him up the stairs to bed (Tom slept on the couch Friday night). He lifted Tom off the couch and placed him in a wheelchair that Tom's dad brought to us. Then he pulled the wheelchair up the staircase while I supported the front. We wheeled him into the bedroom and Jim lifted him into bed, which was not an easy task for him. I changed Tom clothing and got him comfortable, put some medicinal cream on his scab, gave him his medicine, and went downstairs to thank Jim before he left. Jim looked at me and said, "Lisa, you can't do this. This is way too much for you to take on. You need help. Tom doesn't belong here." He suggested I get on the phone with Tom's insurance carrier and demand that Tom be placed into a temporary, transitional rehab facility, just like the hospital had planned on doing. He said that I should fax proof that he is covered by medical insurance, and explain that it will become active in two business days. The insurance will be retroactive back to Jan 1st.

This is one of the most trying times in our lives. I feel so badly for Tom. He is living a miserable existance. I'm watching him wither, and it breaks my heart and my spirit. I feel helpless...

Fluid in lungs

2011-02-03T13:33:00.005-05:00

This is day three at the hospital - not sure when he'll be released, but we were told today that he might be discharged and placed in a residential therapy facility. That would be very strange for the three of us. I suppose it would feel no different than him being at the hospital though. I hope he can just come home and have daily, in-home assistance from a nurse for a while.

The doctors thought that Tom might be showing signs of meningitis, however they ruled that out, thank goodness. What he does have is "MRSA", or methicillin-resistant staphylococcus aureus. Here is some information: www.mayoclinic.com/health/mrsa/DS00735

A chest x-ray showed fluid in both lungs. They are going to do an ultrasound to get more information. The doctor said that Tom needs to begin sitting up more so that the liquid doesn't accummulate even more. If he can't sit up for significant periods of time they will have to perform an invasive procedure in order to remove the fluid. This is called a thoracentesis, and involves extracting fluid from the lungs using a hollow needle inserted through his back.

The huge scab is still very ugly, but it's healing nicely. :-)

Bad tattoo

2011-02-01T14:56:00.007-05:00

I decided to name this blog entry 'bad tattoo', as that is what Katie said her dad's huge scar reminds her of. Tom is in the hospital again. I am sitting next to him as he sleeps (he's heavily sedated with Diloted) while I update you.

Yesterday, I assisted Tom into the shower, sat him safely down on his shower chair, and made sure he had everything he needed to bathe. As I was changing the bedding and dusting the dry skin off the surroundings, I heard him say he was ready to get out. I asked him to wait a few more minutes, and he said he couldn't. He said he was dizzy, and then his speech became a little slurred. I opened the shower door and saw him wobbling, and as white as a ghost. He said he couldn't see anything except shapes. I got down right in front of him and asked if he could see me and he looked off to the side of my face. By this time it was apparent that he was having a seizure: he was completely unintelligable, he couldn't move, he leaned against the shower wall in his seat, he lost control of his bladder.

I called 911 and soon after, about 10 people were in my house, half in my bathroom, and the other half flowing out into my bedroom. I have never understood why 911 always sends firemen and paramedics. Nor do I understand why I have to answer duplicate questions for each team. I also don't know why it took 20 minutes for five burly men to get Tom, only 145 lbs, out of the shower, onto a gurny, and into the ambulance!

He was admitted late last night (he arrived in ER at 4:00). I haven't been able to talk to a doctor. He made his rounds shortly after I stepped out to make a quick trip to the post office. Tom doesn't remember was the doctor said. The kind nurse isn't sure what's happening (I have trouble understanding her heavy British accent). All I know is that he is being seen by five doctors, one being a neurologist, and another, a doctor specializing in infectious diseases. The nurse was able to tell me that the reason he is in the Urgent Neurological Care wing is that there weren't enough beds elsewhere. She said that he will be spending another night but on a different floor.

Now, brace yourselves for the photo. He looks like a burn victim. When I had him take a shower Friday night, he had little scabs and red bumps and splotches. When he took off his long-sleeve shirt before getting in the shower yesterday, my jaw dropped open. He had been scratching and picking at his blisters (from shingles) so bad that it had formed one huge, crusty, deep purple scab. I could not believe what I was looking at. I poured a little hydrogen peroxide on it after his shower and it bubbled over like a science experiment.

Shingles

2011-01-23T12:01:00.011-05:00

Tom has had shingles for over a week now. I took him to the hospital for severe neck and shoulder pain last Saturday, only take him back home a few hours later with a sling around his elbow. The doctor said he had sprained his shoulder, most likely from a fall he had taken in the kitchen about a week prior - he said the pain didn't surface right away, much like an injury from a car accident. He was still in a great deal of pain throughout the night even with pain medicine, and the next day a rash started to surface. He and I thought it might be shingles, after being warned from his transplant doctor over the years that this could happen and that it would be a very painful experience. Well, that doctor was correct, but describing it as "painful" was certainly an understatement. Tom was in such a miserable state: he yelled out whenever his skin came in contact with anything, or when he moved his arm, or whole upper body for that matter. It got much worse. So much so, that I had to call an ambulance to take him to the hospital. On the way there, he was given morphine to calm him.

Once at the hospital, the doctor agreed that Tom did in fact, have shingles. After doing some blood tests, and administering some more morphine, he released Tom with some powerful pain medicine. Well, the medicine helped Tom only minimally. He was in such pain that he was yelling and cursing and crying. Even the slightest featherlight touch sent him reeling into a wave of severe, teeth grinding, eye squinting pain. It got to the point where he was so desperate that he told me if he had a hand gun, he would use it on himself, because the pain was just that unbearable. I felt so incredibily helpless that I could do nothing but cry for him. I called his regular doctor and explained what was going on and asked her to please prescribe him something much stronger, which she did - Demoral. It must be something extremely potent, as the prescription had to be hand delivered to the pharmacist - no calling this prescription in - and had to be picked up on site with ID, as opposed to a drugstore nearby.

The medicine has worked. He's not in much pain, however the rash has gotten much worse. He's scaly, dry, red, and has oozing blisters. I guess of most concern right now is the fact that he has been bedridden for seven days in a row. He was already weak to begin with, suffering from severe muscle atrophy from his disability caused by nerve damage from chemotherapy. That condition coupled with remaining in bed for so long has really taken a toll on him. He cannot stand up without major support. He can sit up by himself now, but walking is out of the question for now. He can scoot his feet a little, but it's as if his knees are locked in place.

We took on (and conquered!) a major challenge yesterday - that being getting him into the shower. I put a lawn chair in the shower (it's a shower stall - no tub) and helped get him in there. He sat for awhile and bathed while I changed the sheets and got the bed all tidy. After the shower came the hard part - I almost had to call someone to help me get him out. It took about 15 minutes just to get him out of the chair and shower stall alone. I had towels everywhere for traction. He finally got the courage to trust me to get him up and out of the chair without anything for him to hold onto. That was the issue all along. He was afraid that I wouldn't be able to support him. He finally made it back to the clean bed after which he took a long, much needed, well deserved nap.

As you can see in the photo above, he is very, very thin. As I stated before, he has severe muscle atrophy which is caused by the muscles getting very little use. The atrophy is the result of the severe nerve damage caused by chemo, and has left him having to rely on the support of a cane. Plus, he just doesn't eat as much as he used to. My shelves and refrigerator are stock-piled with foods that he loves. Since he has been bedridden I have even typed out a menu for him to select from since he is unable to peruse the kitchen. He will eat about ten bites of soup or half a health bar or an Ensure energy drink or half a sandwich. If I give him a small bowl of spaghetti and meatballs (one of his favorites) he will eat half. I just don't know how to get him to eat. I welcome suggestions!

December 2010

2010-12-30T22:35:00.002-05:00

Wow! I truly can't believe my last post was on Sept 9th! That just shows you how much I have going on all the time. When I look back at the history of my blog, there were times when I posted several times each week, included photos and videos...I'm sorry I have let you down and I will make it my New Year's resolution to carry on with a current blog!

Tom is having trouble getting around. The nerve damage in his legs is continual. Seems to gradually get worse. He has had a couple of falls...some seizures...some incontinence at night. He sleeps a lot during the day. At one time in his life the first thing he would do in the morning after preparing a cup of coffee was to get on the computer where he would remain for a couple of hours. Now, it's common for him to take a cup of coffee to the couch, drink half of it, and fall asleep for awhile. Since I have been on vacation beginning on Dec 18th, I have seen days that the computer is not turned on until late afternoon. This is definitely not the Tom that I have grown to know. The computer has always been the equivalent of oxygen to him. He thrives on it...can't live without it. I've referred to it in the past as his mistress b/c he spent more time with "her" than me!

The latest medical issue is that his vision is impaired at times. When he wakes up from a nap, he cannot see out of his right eye. It's the strangest thing. His doctor told him to see an optometrist, or whatever an eye doctor is called (opthamologist, maybe?), which he has yet to do.

His employers have had to discharge him after keeping him as an employee since his diagnosis in May '07. What generous people they were. He will really miss them. Now comes the scary part...what now? How long will his long-term disability continue? Then what? Now there's social security, medicaid, so much stuff to deal with...I hope none of you ever have to endure this paperwork and worry.

Katie is now 12. She and I just went to see the most popular teen pop star in concert, Justin Bieber. It was a lot of fun. She's enjoying middle school...she's the social butterfly...hanging in there with the grades. We're proud of her.

Sorry for the delay

2010-09-09T19:34:00.003-04:00

Well, I did it again - I let a whole month slip by without even one post. We are all doing ok here. Katie started middle school, I started the new school year at a different elem school, and Tom is still our crazy ol' Tom. About the only new concern with Tom's health is that he's been coughing A LOT lately. He couldn't catch his breath the other day and truly panicked b/c he was alone - he tried leaning over a chair back to get the air flowing. He managed to drink a cold glass of water which helped him get his breath back.

His walking is about the same. His ankles are very swollen and he has to periodically elevate his feet to get the blood flowing. He has added a new physician to "the group" - a urologist who is helping him with an issue of frequent urination throughout each night.

I will record a short video clip and post it real soon. A brief interview with Tom.

Disappointing news

2010-07-30T16:45:00.003-04:00

Tom will not be returning to work on Monday. His neurologist feels that it is in Tom's best interest for him to stay home for two more months. Tom's primary care doctor said that she would allow him to work part-time (she didn't feel comfortable with that but I guess she saw how eager Tom was). So the neuro is going to contact the primary doctor and they are going to push the return to work date back.

I feel very good about the decision. I knew he wasn't ready. I didn't think he would even make it a week before having to stay home. The paperwork involved would have been miserable for many - his bosses, the HR dept, the disability provider, the insurance provider, the company who has been applying for his social security disability. They would have had to change his status and then have to start all over with the paperwork. We all want Tom to be strong before he returns to work.

His dizzy spells are still present and today he had some trouble with his vision. His peripheral vision on the right side was impaired and his arm was stiff. He also couldn't type words correctly when he was composing an email and had to stop. Soon after all this ended, his friend came over to take him to lunch. He went and he said he was ok the whole time.

Return-to-work Eve

2010-07-27T22:56:00.005-04:00

Only one more week left of summer break for me - waaahhh! I have been reassigned to a different school this year. I am hopeful that it will be a nice change. I just hope my new principal will understand that sometimes I have to leave suddenly to care for Tom.

Tom is scheduled to return to work next Monday (same as me). I am seriously worried that this will not happen. He has been having dizzy spells - they started about a week and a half ago. They occur daily between 12 - 2. We thought it may be related to not eating, but he had a spell immediately after lunch yesterday. He gets very dizzy, has trouble walking, sees floaters, feels better, and falls asleep soonafter. It seems like a mini-seizure. What makes me think so is the fact that he gets sooo sleepy afterward.

Emotionally he's so ready to get back to work, but he's worried about these dizzy spells. He's all pumped - going and buying new shoes for the office, making a carpool plan with me -but then he has a setback. It's like clockwork - something always seems happens that deters him. I feel so sorry for him. It's like telling a young child that he's going to get a puppy, buying the necessary items, making a plan to care for this pup, and then being told that he can't have the puppy just yet - it's going to stay at the kennel until he is better prepared to take care of it, even though he feels he is capable.

Aaaarrrrggghhh! So frustrating! Let's see what the neurologist has to say on Thursday. I always go to his neurologist appts so that I can tell the neurologist everything that's happening with Tom. Tom tends to leave out things - deliberately or not? I don't know.

Kicked off the team

2010-07-22T18:06:00.004-04:00

Tom had his follow-up appt at the transplant clinic today. The marrow biopsy was negative - yeah! He has some signs of GVHD - elevated eosinophils, itchy skin, numbness, swelling of the feet, yadda, yadda, yadda... There is always some issue, some symptom, some concern. Whatever...

Today Tom was basically kicked off the team. As you know, from recent blog entries Tom stopped taking his medicine. The transplant doc that Tom was assigned to on day one gave Tom an eerily brief exam (throat, eyes)today, after which he told us that he was going to discharge Tom to the care of his oncologist, who is not directly affiliated with the transplant clinic. His oncologist is the doctor who diagnosed Tom with leukemia in May 07, and who he saw almost every other day during his chemotherapy that first year prior to the transplant.

This was not expected. This came out of left field. Tom was all set for a confrontation with his transplant doctor: "Tom, you MUST resume your medicine or you'll die!". "Oh yeah, doctor? Well F*** your medication and your narrow mind. Go jump in your sportscar and pick up your dry cleaning and be sure not to scratch your Italian leather dress shoes on the way!". Tom certainly wasn't expecting to be "let go".

I can understand Tom's ongoing frustration - feeling let down by the doctors, wondering if he chose the right course of action, tired of being prescribed a neverending daily cocktail of toxins. I can also understand the doctor's course of action. If Tom isn't going to follow his regimen then what's the purpose? There is no need to continue seeing Tom as a patient if he isn't cooperating.

So, next on the calendar is his visit to the neurologist. The neurologist is by far my favorite doctor of "the group". He makes us feel that he has Tom's best interests in the ongoing, everchanging plan of action. After that, the next appt will be with the oncologist, who will throw a real hissy fit when he finds out that Tom is no longer a patient of the transplant group.

The latest

2010-07-08T12:04:00.009-04:00

Tom's employer has been so supportive and has gone out of their way to maintain Tom as an employee; three years is a very long time to keep Tom on board, reserving his position, and paying him 60% of his salary. Unfortunately that time is coming to an end. Tom was informed during a teleconference yesterday that if he isn't able to return to work by the end of the year then he will be let go...unemployed.

Tom's health is so unpredictable - he has tried returning to work on a couple of occasions in the past only to have to be put back on disability leave. I'm not so sure he will be returning. His employer will allow him to work only one day at home per week. That's a big step.

We have discussed the idea of voluntary foreclosure in order to sock away some money over the next few months. We have to prepare to live on my salary and HOPEFULLY social security for Tom - this means renting. It's just one of those downs in the "ups and downs of life". It will all work out. We've been through far worse situations than this.

Bye-bye toxins

2010-06-30T10:41:00.010-04:00

Tom has officially stopped taking all meds except the anti-seizure one. He was taking a steroid as well as chemo in pill form. I know it sounds a little risky but this just goes to show how COMPLETELY DESPERATE he is to put this sickly lifestyle behind him. He has traded in the toxins for vitamin supplements and is starting anew. Please refer to my last blog entry to fully understand Tom's reasoning.

Tom is scheduled to have one of his semi-annual marrow biopsies this Thursday. The purpose of this biopsy is to confirm that he is still cancer-free. The fear of relapse will always be present; a "clean" biopsy provides a temporary sense of relief. A marrow biopsy is very painful! It involves piercing the pelvic bone with a huge needle, and extracting a sample of marrow. Obviously, he will be given a sedative. The results will be available in a couple of weeks. As you can imagine, those two weeks are very long.

Near the end of July Tom has an appointment with his neurologist. With this doctor's approval Tom will be returning to work on the first Monday in August. He has a conference with his employer next week, during which Tom is going to suggest the possibility of starting out by working at home for three days each week and two in the office. I feel confident that he can do it. I mean, he sits in front of the computer all day at home. He rarely watches tv. He uses his talent to keep him busy, creating things every now and then such as a business card design for a friend, a random flyer for somebody, a logo for his nephew's Boy Scout Troup, but mainly just designs and icons as an ongoing hobby. He's always working on some little project. He's a geek!

Tom is feeling pretty good these days, however his looks can be deceiving. He looks like and old man: thinning gray hair, stiff joints, the assistance of a cane. But let's remember what our mothers always told us growing up: "It's what's on the inside that counts".

Inspirational comment

2010-06-23T12:09:00.004-04:00

I thought I would share this comment posted to my last entry, "Greedy Doctors". Tom and I found it to be very inspirational (I appreciate all comments):

friendlymentor said...
Lisa and Tom,
I think about you often. I too had my awakening moments where I realized that the medical system is full of frauds. I know that these doctors have gone to school a long time, but I also know that they think they own people's bodies and they have no qualms about charging people a lot of money or prescribing the most expensive treatments.

I ended my treatment in 2004 by making up my mind that this is my body and I am no longer interested in putting a lot of different kinds of pills into it. Over the long run, I was right. I avoided any more doctors, I did what I know in my own mind is right for me, and although I'm not always right, I just had a blood test last month that showed the best health results ever.

You have to go with your gut instincts. When the doctors have done all they can, please realize that they have done all they can. And don't allow them to do any more. Live with yourselves and bring yourselves back to where you want to be. That's my advice. Use the power of your minds to heal this problem.

At some point you have to discriminate between "healing" and "the USA health system."

We want the best for you and your family. At first when adversity strikes, you look to people who know better than you. After a while, you come to understand that those people no longer know better than you. They don't live at your house, they don't work and play with you, they can only give you an outside opinion.

Once I realized that these people called doctors live a much better paid life and are bent upon using my insurance to pay for more of their on-going priviledges, I divorced them.

If you need them, use them. If you aren't gaining any benefits, go your own way.

Greedy doctors

2010-06-14T21:57:00.003-04:00

I was researching the doctors that own the Blood and Marrow Transplant of Georgia (BMTGA), which is where Tom underwent his stem cell transplant. I don't know why I decided to do this. I guess maybe because periodically we get angry at those doctors and wonder if they made a mistake somewhere along the way. I wanted to see if any of them had a history of malpractice. Well, I came across an interesting document: the doctors from BMTGA, who also own AtlantaBlood Services (ABS), along with Northside Hospital where Tom has spent many, many days as a patient over the last three years were found guilty of violating the False Claims Act against Medicare. I'll let you read it for yourselves:

www.justice.gov/usao/gan/press/2006/10-20-06b.pdf

Ok, so it has nothing to do with patient care, but still it's unsettling to us to think of the greed that these doctors possessed. Is this a trait that one would overlook in selecting a medical provider? Given a choice I would have looked elsewhere. Unfortunately, there is no other place in our area that is covered by our insurance provider.

I just found that interesting and thought I would share it with you.

Tom is sooooo down. He's so sad and discouraged. He talks grimly. He's so fed up with taking his medicine. He's ready to risk stopping them. He wants to know if the meds are keeping him from recoving. I'm on the fence about the idea but I'm leaning toward stopping them. I mean, are those doctors keeping him on the drugs to cover their asses (they are in no position to take a risk), or do they really care about his future and plan to taper them eventually? It seems that whenever Tom consults them they enter the room in their perfectly pressed white medical coats, ask how he's doing, and tell him to stay on the drug regimen indefinitely. Five minutes total: "Hello, how are you? [jot down notes] Ok, your test results look fine, keep taking your medicine. Your legs? Well, they might be permanently disabled - we'll monitor them. See you in six months".

Can you sense my level of frustration? Yes, it's high. Don't worry - I stay positive in Tom's presence. Thank you for "listening" to me rant and rave. You guys are a great support!

Goodbye Lyrica

2010-05-21T17:14:00.008-04:00

Oh no - I let the month of April slip by without even one post! I said I would always try to post at least one time each month.

I have one more week of work until summer break begins. Ah... 10 weeks off with pay. I'm really looking forward to it. It seems as though every year at this time just before summer break begins, Tom has a mild setback - it's like clockwork. I hope this summer will be different.

In my last post I wrote about Tom's trouble talking, and simple signs of what I believed to be a mini-stroke. The talking trouble seems to have been an isolated event. However, the numbing remains.

At the suggestion of his neurologist, Tom slowly stopped taking a medicine (Lyrica) that is supposed to manage pain from nerve and/or joint damage. He took the last pill 12 days ago. Now, we don't know if this is a side effect or not but he has been very tired and light-headed, seeing floating spots (floaters) on occasion. Last night he had trouble walking. I practically dragged him up the stairs to bed. He was so panicked and worried (which rubbed off on poor Katie). He started feeling a little better and watched some tv. In the middle of the night he had to use the bathroom. I helped him get there and walked him back. Now, I'm not talking about holding his hand; I'm talking about seriously supporting him over my shoulder. At one point on the way back to bed we both fell to the floor. I told him to crawl and he couldn't do it at first. He got very angry - not at me, but at his situation. He finally managed to get back in bed.

Today he is just not feeling very well - depressed, tired, light-headed. He says he's a four on a 1-10 scale. I think he's experiencing withdrawal symptoms from the drug he recently quit taking. His body is resisting but it will be "back to normal" (whatever that means) soon. No pain, no gain.

Each week, Tom tries to get out of the house every day, which is usually just a trip to the grocery store. He's been cooking dinner lately - fajita burritos are his specialty! He has also grilled fish a couple of times...mmmm... He cooks about three nights per week. Near the end he becomes exhausted - standing up and shuffling around can really wear him out. I love walking in after work to find dinner already under way.

Some folks from IHG (Tom's employers) brought lunch to our house a couple of weeks ago. Tom really enjoyed their company. It gave him a much needed boost. You know, when you have been out of work for as long as Tom has and you still have people from the office come visit, that says so much about them.

Uh oh

2010-03-31T16:45:00.004-04:00

For the past two days, Tom has experienced some numbing in his arms and legs. Twice I've had to help him get to the couch in a hurry so he wouldn't fall. He would get dizzy and he couldn't focus on things for about two minutes each time. One time he said he could see and manipulate his left hand but he couldn't feel it. He said it seemed as though it weren't attached. It was really bizarre.

Today was very scary. He called me at work and told me that he wasn't doing very well. His whole left arm was numb, and his legs felt as heavy as bags of sand. He was extremely nervous. So I left work and talked to him on the phone all the way home (my commute is 45 minutes). During our conversation he began having trouble pronouncing words. He couldn't make complete sentences and the words were were all garbled. I could however understand what he was trying to say. For instance, when his speech started "messing up" he was in the middle of eating a banana. He said, "Eat...na...ba...na. Eat...ban...nab...ban". He went on like that during our conversation. I started quizzing him - giving him some brain exercises - by asking him familiar questions such as, 'What room are you sitting in? What is your full name? What are your brothers and sisters names? What street do you live on? What is your favorite movie?'

His answers:
room? kitchen (correct)
full name? Thomas ah..add..arian...adrian carter
siblings names? He aced this question
street? Highland colono..collon..col..conoly..colony
movie? balad grunner..blad..ron..blade gron..(he sighed and I told him the answer, Blade Runner)

He was asleep on the couch when I got home. I sat at the other end and we just stared at each other. We had no reason to talk as we knew what the other was thinking - 'God, what now'? I glanced out to the deck and saw smoke blowing from a stick of incense. I asked Tom why there was incense out there. He said he seriously thought he was going to die before I got there. Our beloved dog died almost two weeks ago. She walked out to our driveway, laid down, and passed away. Tom lit some incense and laid it next to her, after which he stroked her and talked to her.

Sometimes I think he is starting to give up on himself. I try my best to encourage him and remind him that he has come this far, suffered so much more than this, and that he will probably have setbacks, maybe for a long time, but he has to stay strong and keep up the fight. He's lonely, he feels worthless as a provider, he looks ten years older than he is, he can't skip, he worries about his health all the time, he has to swallow toxic medications every morning and evening wondering if these are the cause of his problems, he wants to work, he worries about dying, etc. What a terrible way to exist. I'm still his #1 cheerleader though - trying to keep a happy face.

Wednesdays

2010-03-27T12:47:00.003-04:00

Tom has stopped shopping at grocery stores on Wednesdays. The first time he was offered the "senior discount" was humorous. The last three times have been annoying for Tom - I mean, he is only 44 years old.

A couple of friends said he should take advantage of the discount. What do you think? I still think it's kind of funny. I love that old guy.

OUCH!!!

2010-03-03T19:27:00.002-05:00

Tom had some severe pains just under his rib cage. So severe that he could hardly talk. All he could do was groan and lay flat, writhing in pain. It was quite scary - we thought he would have to go to the hospital. I did some research and found similar symptoms that show signs of gallstones. The pain was short-lived, but oh so painful.

I swear, if Tom visits the hospital one more time I think the employees will think he can't get enough.

Life is stagnant right now.

The latest

2010-02-16T08:08:00.006-05:00

Dr. DeAngelis, from NY has concluded that she sees nothing wrong in the PET scan images - body and brain. Also, the lumbar puncture she ordered turned out negative for cancer cells (yeah!). Unfortunately, there is nothing she can do. She was very thorough and we are completely satisfied with her service. End of that chapter.

As strange as it sounds, this news was only semi-conforting. Tom was really hoping that something would surface...that something would show the cause of his physical problems (something that could be corrected of course).

So, next on the agenda is getting permission from Tom's army of doctors - neurologist, oncologist, transplant physician - to return to work; his return-to-work date is slated for the end of March. His employers need confirmation from a physican that Tom is ready to work, and understandably so. He is a risk right now because of his instability/immobility. I can see how it would be distracting and unnerving to have him at the office. As usual, they have Tom's best interest in mind. They are good people.

Last week, Tom's body began to feel numb on one side for two days in a row. The feeling last only about a hour, but certainly worried us. He made an appointment to see his neurologist, who has sort of become his primary care physician. The neurologist shuffled around Tom's dosage amounts and times for taking his medicines. So far, so good - he feels much better. Unfortunately, getting back to work may be delayed for a couple more months...we'll see.

This is almost too much for Tom to handle. Every time things seem to be settling back to some level of normalcy and he begins to pick up some speed there seems to be an unexpected speedbump resulting in a flat tire. He is so tired of living in this cage - he wants to resume his 9 - 5 life so badly.

Sorry for the delay!

2010-01-20T21:57:00.004-05:00

Hello everyone,
I'm so sorry for the delay in keeping you posted. Tom is doing fine. Dr. deAngelis ordered a lumbar puncture to rule out the possibility of new leukemia cells - don't freak, it's just a formality in her very in-depth look at Tom's situation. She also ordered a PET scan of his head. You may remember that she ordered a full-body PET scan, but that was only from the neck down. I don't understand why the head wasn't included. Anyway, she wants an in-depth view of his brain and upper spine area - I guess the body PET scan didn't show anything of concern to her. We aren't sure what she's thinking, so it seems like the lumbar puncture, which is a procedure to extract fluid from the lower part of the spinal cord, coupled with the PET scan of the brain will show something of relevence to her. It really feels like this is it - if these tests show nothing then he will just have to live his life handicapped, truly...cane and all.

On a brighter note, as you know, Tom is like no other; he embraces the ability to overcome obstacles, and possesses an ominous motivation to conquer his condition. He will rise above this...

Happy New Year!

2010-01-08T14:16:00.003-05:00

Our Christmas tree is still up, as are all the decor around the house. I used to believe that it was bad luck to keep your tree up past New Year's Day, but really??? Maybe it's bad luck to take it down. Call me a pessimist but I don't get excited about fortune cookies, finding pennies face-up on the pavement, lucky numbers, etc.

Anyway, on a happier note Tom is doing fine. We're having a snow day and enjoying our fire in the fireplace, pajamas, hot chocolate, and laptops. Tom looks and feels good - his hair looks darker, his face is pinkish, and he's motivated. He actually seems well enough to return to work and it's usually difficult to convince me of that.

Merry Christmas!

2009-12-25T15:19:00.012-05:00

Tom was discharged yesterday afternoon! It was determined that Tom had a seizure. He seems be "back to normal" whatever that means. He has become somewhat of a mystery patient over the past 30 months - he gives the doctors an ongoing challenge, which they need once in a while. His medicine regimen was altered slightly to counteract any possibility of another seizure. If that was in fact a seizure, it was the strangest one I've ever witnessed - no jerking, no slurred speech, no loss of consciousness, and plus he was able to eat dinner. I still think the symptoms he suffered are warning signs of an impending stroke.

I picked him up from the hospital, took him home to shower, and then the three of us went to my mom's house to spend the night. We have always spent the night at my mom's every Christmas Eve with my siblings, however we weren't able to do so for the last two Christmases because of Tom's condition. We had a good time - ate a delicious, authentic Italian bolognese with homemade pasta, fresh baked bread, and lots of wine. We listened to Christmas music, while some of us played games, others looked at slide shows, all amongst lots of laughing and merriment and the warm feel of the woodburning stove nearby. Very healthy for the soul.

Last night around 11:00, Tom's legs started feeling very weak and he developed a mild headache. I helped him to bed and he was ok until the onset of a severe stomache ache in the middle of the night. That was probably due to the combination of a rich dinner, followed by cannoli, and maybe the one glass of wine he had.

We were looking forward to a trip to the mountains today to spend time with our family on Tom's side. He stems from a large family - about 31 of us to date - and it's impossible not to have a great time when we all get together. We always add plenty to our ongoing collection of fond memories. Unfortunately, Tom's legs became very weak once again and his head began to hurt pretty bad. It's very difficult for him to walk when his legs do this, and he searches quickly for the nearest chair. He looked at me and said, "I'm not going to be able to go to the Hilltop today". That's the place were everyone was meeting. We were all bummed about this.

We're back home now, in our pajamas, with a fire burning in the fireplace, snacking on fudge, tuning into the background periodically to watch the funny parts of A Christmas Story, and fiddling with our various new Christmas gadgets.

I'm in desperate need of a nap. We are never allowed to sleep late on Christmas - my parents wake us up before the sun rises to open gifts....proof that we are all kids at heart. :-)

One more thing

2009-12-24T09:25:00.011-05:00

I didn't know exactly where to place this information in my last posting: we were thrown a curve ball yesterday when Tom's neurologist told us that he had been in touch with Dr. deAngelis (the doctor in NYC) recently and that she had requested a PET scan to rule out the possibility of leukemia cells within his brain. The key word here is "possibility". Why would the neurologist tell us this? Dr. deAngelis didn't tell us why she ordered the PET scan and I believe it's because there is no need to upset someone if the scenario is just a "possibility".

What is a PET scan you ask?

A positron emission tomography (PET) scan is a special kind of imaging test which allows doctors to see how certain tissues and organs within the body are functioning. The most significant difference between a PET scan and other imaging tests such as an MRI or CT scan is the ability to detect changes in the body at the cellular level rather than after a disease has progressed enough to actually effect the surrounding tissue or organs. A PET scan may be useful for helping to detect certain types of cancer, brain disorders, heart problems and other conditions of the central nervous system.

---

Tom had a PET scan done two weeks ago after which he overnighted the disc of images to her. Since she works only one day per week, Tuesdays, and since this is a holiday week, we haven't yet heard from her. She is very professional and keeps in touch with us. I feel certain that she will call next Tuesday.

Now, why he has never had a PET scan prior to the request of Dr. deAngelis is a mystery to me. It truly angers me. Why hasn't Tom's neurologist in Atlanta, or his oncologist, or his primary care doctor, or his transplant doctor requested PET scans over the last 2 1/2 years?!?

Christmas Eve '09

2009-12-24T08:46:00.005-05:00

Hello everybody,
I hope you are all prepared for tomorrow and can relax a little today. I think I'm finished as far as gifts are concerned, however I am missing one very important part of my holiday - Tom!

Yes, it's Christmastime and Tom is in the hospital (why Christmas every year, right?). He may have had a seizure Wednesday afternoon. It all started out with him not being able to see his left hand when he had both hands placed on a chair in front of him. His extremeties became numb, to the point of me having to put him over my shoulder and drag him to the couch. Katie helped to maneuver his feet around the corners of different objects. He really couldn't walk. Next, he felt dizzy and thought he might be having a petit mal seizure. His pheripheral vision became more limited on the left side. Next, he started complaining of a headache - in the right frontal lobe area of his brain. So with all of those symptoms and the fact that one side of one's brain affects the opposite side of the body, it seemed to be more symptomatic of a mild stroke.

Tom was conscious and able to talk and eat. Dinner was ready at about the same time all of this began taking place. So once he got settled on the couch he asked for a bowl of chicken pot pie. Five minutes later he asked for more. When I went to get his bowl from him I noticed that there was still a significant amount of food remaining, which I pointed out to him. He said, "Oh, I didn't see that". He was really having trouble with his vision. He couldn't see me if I was standing to his left.

He finally agreed that we should go to the hospital asap which we did thanks to my neighbor Jim for helping me get Tom in my car. He was checked into the ER, talked to a doctor, had a CT scan, and was eventually admitted to the Neurology wing.

He spent two nights there. It is Christmas Eve morning as I type this and I still don't know if he will be discharged. I talked to his nurse who gave me the following, most up-to-date status:

*No seizure actitivy
*Most recent MRI shows improvement over the last one which was performed yesterday
*He has a slight headache
*Once the doctor makes his morning rounds he will determine whether Tom can be discharged today

That's all I know right now.

Thanksgiving

2009-11-25T22:53:00.005-05:00

Hello!

I hope you are all preparing for some serious r&r over the next few days. It sure feels good to have time off from work. We are spending Thanksgiving at home with our dads and brothers as guests. I started cooking this evening while Katie and Tom went to see the latest and greatest vampire movie. It's good to see them get out and spend time together.

Tom is doing well other than the usual leg problems. He looks really good. We haven't heard anything from Dr. D in New York. She's awaiting all of the imaging that Tom is having done. The imaging has to be spread out - I don't know why. As soon as she gets all the images and reviews them we expect that she will schedule a consultation. Hopefully she'll be able to provide some long-awaited answers for us all.

Happy Thanksgiving!

Latest

2009-11-07T11:58:00.004-05:00

Dr. DeAngelis (specialist in New York) has requested three different types of MRIs which include images of the:

1) Lumbar spine (lower)
2) Thoracic spine (upper)
3) Full body (PET scan)

She doesn't want them all at once though. She is going to request them as needed, the first one being the lumbar which Tom did last Thursday. I guess she has some idea of what she's looking for and doesn't want to have scans done unnecessarily. Dr. DeAngelis doesn't accept scans sent electronically, therefore Tom has sent them via Fedex. I think it's great how efficiently the scan records are distributed - Tom always walks out of the facility with a disc of the images in his hand. I'm glad we have the option of having them on disc or online.

We haven't heard anything from Dr. D yet but that's because she is out of the office until Tuesday. I'll keep you posted.

Tom is doing okay except for a bad cough and some congestion. These both started after he had a vaccine for the Swine flu last week. I thought it was a rather risky decision on Tom's part since he currently has a weakened immune system. God, please spare him the flu.

"Who's in charge???"

2009-10-28T11:29:00.006-04:00

The trip was nice. We didn't do too much. We checked into our hotel, had a late lunch at a deli less than a block away, and went back to the hotel for the remainder of the day. We liked the food at that deli so much that we had it for dinner too - delivered to our room this time. The next day, we thought we might go to Rockefeller Center for a view of the city or take a carriage ride but the weather was overcast and rainy and I was starting to feel flu-like. So after the doctor appt we ate lunch and went to the airport. Uneventful but nice. We'll see if we can do more if we need to go back for another appointment, and we'll take Katie with us. We haven't been anywhere - just the three of us - in a long time.

Tom had the most thorough exam that we can remember. Dr. DeAngelis's assistant, who is also a physician examined Tom from head to toe, asked one million and one questions, and recorded just as many notes. He was very good, very detailed. He did many tests using a pin prick and a vibrating instrument to determine where exactly Tom's numbness and pain were located. He did lots of mental tests like memory games and such. He also did visual and strength and coordination tests. He observed Tom's walking ability. He spent about an hour in the room with us. Then he took all of his notes to Dr. DeAngelis.

A while later he returned with Dr. DeAngelis - a very nice and professional woman - who immediately started asking quesions that we had a very difficult time answering. We had trouble recalling details from 2007 and 2008. She asked questions such as: In which month did this symptom begin? What about that symptom? What medications were you taking when such-and-such happened in Oct 2008? How many milligrams? Did you start feeling better? Who told you to take that medicine when such-and-such happend? Did you feel better or worse after such-and-such was done? Why did that doctor have you stop doing that? On what date were you told that you were in remission? Have the doctors told you that the donor's cells are completely grafted? When? What date did you have your last spinal tap? What happened when you started feeling like that? Which doctor saw you in the hospital in December 2007? On what date were you discharged? Were you able to walk at that point? When did you notice this symptom? Why are you currently taking that medicine? You mean one doctor told you to take this but another doctor told you to do that?

The whole time, in between answers she would look over at her assistant with these looks of astonishment, or confusion, or laugh a little, or with her jaw dropped open. She would intermittently make comments to him so low that we couldn't understand her. He would nod and/or take notes.

So many doctors names were mentioned that finally, she said "Who's in charge???" Tom and I looked at each other, a little relieved because finally someone was asking the same question that we having been asking ourselves for a long time. Tom told her that he wasn't sure and that he has felt like a football being punted around between them the whole time.

She put her hands up in a little frustration (not at us, at the doctors) and announced that she was going to start from scratch. She was going to order all new tests and images including a full body PET scan which is a 3-D, color image. All of these tests would be done in Atlanta and forwarded to her. She is also going to re-evaluate Tom's current medications as she feels that some of them are unnecessary and may actually be masking the problem. In other words, the steroids or the Lyrica (pain management medicine) may be hiding the symptoms of the real problem.

I asked her if she had any idea what the problem was and if she thought it might be cancer-related. She said she didn't know but that she would certainly find out. She gave me the impression that she was on a mission.

So, for now that's all we know. We don't know when we'll see her again. We really like her and we are hopeful once again.

Home

2009-10-28T00:15:00.002-04:00

It's hard to believe that we were at home yesterday morning, I was making a fruit smoothie on the way out the door to the airport, and here we are the next night after picking up Katie who will be going to bed in less than an hour. It feels like we've been away for a couple of days.

I'm too tired to go into detail about the dr. visit right now. Let me just relieve you for now and say that there was no bad news. I will write in detail tomorrow.

I think I have the flu...uggghhh!

Countdown to NY

2009-10-23T20:41:00.004-04:00

This whole trip is bittersweet. I'm still looking forward to it - getting out of town, being in New York City for the first time, and having two days off from work. I know the ultimate purpose is not a pleasure trip but rather to stay focused and to gather more information on this never-ending sh*t. I guess I'm just looking forward to getting on a plane and leaving town. The thought of talking to a specialist is strangely comforting. I hope she holds the missing piece.

Katie isn't very happy about the trip - she really wants to go. She and I have always talked about how we would visit New York for the first time, just the two of us, since Tom has always declined the invitation, sending his blessings for our long weekend away in the Big Apple. Of course, she completely understands the nature of the trip and doesn't discount it in any way. She loves us and wants us to find answers. She'll enjoy her stay at the Stuarts' far more than she would a day in a medical facility.

Tom is still about the same. His steroid dosage was increased recently, so he has a little more strength (and attitude!). I love that grouchy man...

Looking forward

2009-10-16T20:38:00.005-04:00

I don't know whether excitement or nervousness is taking over me lately as we look forward to NYC. I have always wanted to visit New York City - here I am at 40 finally going but not for the length or the purpose I had always planned. We don't usually leave Katie behind when we do anything, but we decided that since it's such a short trip and on a school night we would go by ourselves. It's nice being alone sometimes...very relaxing. I wish we had planned for two nights.

During our short day and a half trip we will not be doing much as you can imagine, because lots of walking is usually involved in sight-seeing. I thought we might go to the Empire State Building but I've found out that one usually has to wait in line for two hours before entering.

While we are there we want to eat at a few popular delis and pizzarias (we have spent many years watching the Travel Channel and the Food Network and have noted countless reviews). I also want to take a horse-drawn carriage ride around Central Park. For those of you who don't already know, as I did not until recently, Central Park is 843 acres. It's a vital organ of the city, with lots to see and do.

I'm sure we'll spend a lot of time at the hotel because it's so beautiful in itself.

I guess I'm not thinking about the ultimate purpose of the trip right now. I'm letting myself off the hook for now and planning a fun trip.

Preparing

2009-10-13T11:08:00.004-04:00

We are busy preparing for our trip. We bought our airline tickets last night.

Dr. DeAngelis needs Tom's medical records from the past 12 months. There are so many doctors that have to be contacted in order to accomplish this task. Some places, unfortunately are very difficult to communicate with. The hospital for instance needs various release forms. Dr. DeAngelis's office will have to request the hospital records as they don't release them to patients without a fee. They told us recently that we could have a complete copy of the medical records for $4000. No thanks.

Thanks to IHG, Beth Paschetto to be exact, we have a hotel room. The hotel is VERY nice. She really went all out for us. This place is less than two miles from Sloan Kettering Medical Center!

Here is a link:
http://new-york-barclay.intercontinental.com/

Lisa

Typical day

2009-10-11T17:02:00.004-04:00

This weekend has been pretty uneventful. Tom hasn't had any numb spells. He still sees floaters - he describes them as small neon blue dots that pop/explode. He looks fine. He describes his legs and feet as a "trainwreck". There is some serious nerve damage there.

Katie will be staying with the Stuarts during our trip to NYC. Those Stuarts, I don't know what we would do without them. They have "kept" Katie whever we needed them over the past 2 1/2 years.

Also, Katha Stuart told me about a place that is part of the American Cancer Society called Hope Lodge. This is a program, with several locations around the country, which provides temporary housing for people treating cancer, who are traveling from out of state. It's sort of like a hotel but it also has a community kitchen, a library, and a meditation room. The rooms are very nice suites. There is a minimum stay of three nights and you must have a referral from your clinic's social worker. Also, it is first come first served. So, if we find ourselves having to stay in New York for an extended time in the future we will try to reserve a room.

Trip to NYC

2009-10-08T16:43:00.011-04:00

The appointment with Dr. DeAngelis is scheduled for 7:30am on October 27th. She sees patients on Tuesdays only, I guess that's because she mainly does research? She has a book on Amazon priced at $350.

Intercontinental Hotels Group, aka IHG (Tom's employer) has offered to assist us by finding a discount hotel rate while we're there. They are so good to us.

No news yet

2009-10-07T21:56:00.002-04:00

We should know by the end of the week as to when we will be going to the specialist in New York. Tom had a "numb spell" on the right side of his body this evening after which he had some trouble "finding" words. He talked on and on but it was at a slow and deliberate pace. He's over it now and he is fine.

Road trip via airplane

2009-10-05T16:37:00.007-04:00

Tom has been referred by his current neurologist to a neuro-oncologist in Manhattan by the name of Lisa DeAngelis. She is the Chair of the Department of Neurology, as well as the Co-Executive Director of the Brain Tumor Center at Sloan-Kettering. This hospital is supposedly the best cancer center in the US. That's all we know right now. We don't know if he has a brain tumor or not. By the way, today is our 18th wedding anniversary...lovely...

http://www.mskcc.org/prg/prg/bios/189.cfm

http://www.mskcc.org/mskcc/html/289.cfm

Sad

2009-10-03T17:41:00.001-04:00

Tom is very sad today...says he's not hopeful.

Specialized treatment

2009-10-02T19:42:00.002-04:00

Tom was discharged from the hospital this evening. The doctors aren't really sure what to do at this point. His neurologist says that Tom may have to seek a highly specialized neurologist to take on this situation with his brain. He may have to go to Johns Hopkins in Baltimore, or the Mayo Clinic which has three locations - Florida, Arizona, and Minn. Both hospitals are highly ranked.

Tom is feeling ok - just a little depressed. We're relaxing on the couch all snuggled up under some blankets and Katie is entertaining us by singing.

2009-10-01T20:37:00.014-04:00

Tom is doing much better today. I arrived at the hospital around 8am and found him sleeping. He awoke shortly after I walked in and said he had slept ok except for the occasional "Mr. Carter, I have to take your vitals now" from the nurse. Other than a mild headache he felt alright. He told the nurse that he was a "7" on a scale of 0-10. He was given a small dose of morphine...fun, fun!

So, he was a tad drowsy but not too bad. He was able to carry on an articulate conversation, just a little slower. His father visited and that cheered him up.

A while later Tom ate his lunch which included strawberry shortcake with the reddest of red syrup on top. He finished, pushed his tray away, and the next thing I knew I heard him sleeping. All the time, I had not looked at him because I was reading. When I finally looked at him, his chin was on his chest and he was asleep sitting up in his hospital bed. His lips were as red and glossy as if he were wearing cherry lip gloss. It was kind of funny.

A couple of doctors visited today on separate occasions - a general internist and a doctor from the transplant clinic. The general consensus between the two was that Tom has gvhd-cns (which we already knew) - that stands for graft versus host disease of the central nervous system. Gvhd is common among stem cell transplantees, however gvhd of the central nervous system is rare. Gvhd occurs when either the donor's cells attack Tom's body (because it is foreign) or Tom's body rejects the donor's cells for the same reason. In Tom's case, the donor's cells are attacking his brain.

The last MRI, done several weeks ago showed various lesions of white matter around his brain - this is called white matter disease. The MRI done today shows that some of the white matter lesions have decreased in size but one area has expanded. This is a sign of gvhd-cns . For now, the BMT doctor (bone marrow transplant) is recommending that Tom increase his current dose of steroids, called Prednisone which is an immunosuppresent(funny thing - I thought steroids made one's body powerful and that's why body builders take them). Also, they may be increasing his dose of Cellcept, a chemo drug which helps ward off gvhd.

So I've pondered all my scribbled notes for a few hours, and what I think is that his gvhd is expanding in his brain therefore they want to increase the Cellcept to counteract that. Also, to make his body less able to resist the donor cells they are increasing the steroid. It's all crazy...like a dog chasing it's tail.

Tom will be spending another night in the hospital. We're still waiting for the neurologist to visit. He will have the most accurate diagnosis and immediate plan for Tom.

September

2009-09-30T21:11:00.004-04:00

Well, I'd planned on posting at least once per month just to keep the lines open. This morning I realized that today is the last day in September and I had better post before bedtime. Little did I know I'd be writing this after returning home from a long evening at the hospital with Tom. This evening around 5:00 Tom told me that something wasn't quite right with his vision - when he typed he said he couldn't see his hand, but when he looked at it it was there (I don't know if that has something to do with his peripheral vision or not). Then he felt hot, although he didn't have a fever. His body would tighten up on his right side every few minutes, and his speech wasn't normal - he had trouble finding words here and there. He was in the middle of typing an email and he asked me if it made sense which it did. When he read it out loud he had trouble pronouncing a few of the words. Next came a tremendous headache. Finally, I had to ignore Tom's pleading and call an ambulance.

The doctor, nurse, and technicians each did their parts - poked, prodded, asked lots of questions, x-rayed, and took notes. No one seemed too concerned. Tom was more concerned than usual. He shed a few tears and said "I don't know what's happening. What's going on with me? I'm so tired of all this."

When I finally left (I went home to tend to Katie), Tom was fast asleep. On the way out of the ER the very nice doctor stopped me and told me he would call me when he had any news, and he verified my number (that's rare for a doctor to go out of the way like that, at least in my experience).

At this point all I know is that the doctor said Tom's "little episode" was not anything to worry too much about. He is going to talk to Tom's neurologist about the situation, study the CT scan, and take an MRI. The MRI will be the most revealing.

Good-bye, Daisy...

2009-08-10T18:43:00.004-04:00

We had to put our 12-year-old dog, Daisy, to sleep unexpectedly two weeks ago. She was having a difficult time breathing and she collapsed on the front porch when we opened the door to let her out. We took her to the after-hours animal emergency clinic where she was diagnosed with a very aggressive form of cancer. It usually takes a dog's life within 6-8 weeks.

We had Daisy cremated and took her ashes to my mom's property for burial. My mom and step-dad live on 10 acres, and there is an area that has become a pet cemetary over the years. All of the family pets over the past 30 years have been laid to rest there with a medium-sized rock on top to mark the locations of each.

Daisy's mother Scout, who is only one year older, is still with us.

auto-pilot

2009-07-30T14:41:00.009-04:00

Well, as much as Tom is emotionally ready to return to work, he is not physically able right now. He has an impending return-to-work date of Aug 24th but after an examination by his neurologist last week the doctor is not entirely in favor of the idea.

The neurologist sent us a copy of the most recent medical records which basically say:

*speech is normal but a little slow
*absent ankle reflexes
*mild ataxia and cognitive slowing caused by multifocal white matter disease seen on MRI
*cerebral graft-versus-host disease
*slow and wide gait
*reduced light touch sensation in lower legs
*high risk of morbidity

We are going to request that Tom be placed on "disability auto-pilot", aka long-term disability. I'm tired of having to fill out extended return-to-work requests every six weeks, and I'm pretty sure his superiors at work must feel the same. Simply put, he isn't giving himself enough time to mend - it's like taking off a band-aide before the wound has fully healed. I hope they will not write Tom off at this point as that would crush what remaining self-confidence he still holds.

What a journey

2009-07-21T17:27:00.018-04:00

May 2007

May 2008

May 2009

Down day

2009-07-21T13:10:00.006-04:00

Tom is feeling kind of down today. He woke in the middle of the night and half of his body was numb and stiff. He had trouble walking to the bathroom - I helped him because he almost fell. It subsided within 15 minutes - he's fine. His short-term disability checks haven't arrived in three weeks (red tape, hoops, forms). He reeeeally wants to return to work, which will happen at the end of August as long as everything goes accordingly. We discovered this morning that our pets have fleas. Katie is bored. Not a happy day here at the Carter house...

Sunday post pt.2

2009-07-12T12:01:00.017-04:00

We went to the BMT clinic (bone marrow transplant) last week. We sort of enjoy going these days since the visits are now three months apart. It's nice to see the staff - the receptionists, the nurses, doctors, coordinators, pharmacists, etc. It's a bit disturbing though to sit in the waiting room among patients who have no clue what they are in for down the road - what a hellacious journey awaits them. These patients (not all, obviously) sit quietly, with looks of concern, some with little skin color or hair, wondering what phase the others are in and their prognoses. I wonder what they are thinking when Tom enters the door with his frazzled hair and his cane, walking like a drunken sailor and addressing the receptionists with a big familiar greeting as if they were old friends. 'Wow, this man must having been coming here for a looooong time. Man, what happened to this guys legs! Is that chemo-related?'

The BMT doctor told us that the biopsy that was recently done showed no signs of cancer cells! He asked Tom to get an MRI done and visit the neurologist though. He wants to see the status of the white lesions in Tom's brain (April 25th blog post), and to make sure nothing has changed. Although he gave Tom clearance to return to work at the end of August, he told him that he would need clearance from the neurologist (appt with him on 7/24). He will have to make regular visits to the neurologist to address his ongoing nerve damage and periods of numbness.

His memory and concentration are back to normal. The only ongoing problem remains a physical one - chronic peripheral neuropathy which affects his ability to walk a strait line. He can walk straight forward but he teeters from side-to-side, and can lose his balance if he doesn't literally watch where he's going. He has to be very deliberate. He fell in the parking lot on a recent trip to the grocery store and fortunately there were two people close by who helped him up. Although we remain frustrated by the nerve damage to his legs, we are becoming more curious than anything: What exactly caused this? Was it a drug overdose? Was it caused by a lack of communication? An oversight? Is it "normal"? Will it go away? When?!!!

Tom, has extended his medical leave of absense from his job for a few more weeks (as always, grateful to IHG). He's waiting until he has finished his physical therapy, and for his body to get used to the decrease in the amount of steroids - he has just finished a taper and is now taking 20 mg of steroids (prednisone) every other day, indefinitely. The doctor said he could take 10 mg daily but his adrenal glands would get used to not having to do anything which could cause trouble in the long run.

I think that Tom's returning to work will be more of an adjustment for his colleagues than for Tom. I think they will be uncomfortable seeing Tom get around. Tom has trouble walking but I think he will perform his tasks just fine. It's just going to take some adjusting for everyone.

All we can do is stay positive, celebrate every day that we wake up side-by-side, and not give in to this lurking demon.

Back from vacation

2009-07-12T11:29:00.009-04:00

We have returned from a lovely week at the beach. I drove the whole time, which I've never done before. I drove us to Savannah to bury Tom's mother's cremated remains, and then to the beach.

The weather was perfect, the air was refreshing, the sand was like sugar, and the condo was beautiful (thanks Ralph!). Katie and her friend Noelle had a wonderful time snorkeling, shopping, watching movies, crabbing in front of the hotel at night, bungee jumping, and swimming. Tom and I really enjoyed the boat ride out to a small island called Shell Island (this is where the girls snorkeled). It was cloudy that morning, so Tom was able to sit out in the open on the side of the boat and take in the view of the dolphins as opposed to having to sit in a shady spot somewhere on deck with a limited view.

Tom went to the beach once, after sunset, and stayed for about 10 minutes. It was a real challenge for him to walk in the sand. He didn't get in the pool because he felt it was too risky as far as the amount of germs - there were a lot of people there. He really just stayed inside with his laptop the whole time, out of the sun. Sounds boring, but not to Tom. He occasionally sat on the patio and enjoyed the view of the ocean from 22 stories up.

We went out and ate seafood one night, and browsed some little surf shops and trinket stores. Well, us girls browsed but Tom sat on benches here and there - he just can't stroll up and down the sidewalk like the rest of us. He's ok as long as he's sitting. It was a refreshing getaway. We just love the beaches in the panhandle of Florida. That's the only place we ever go.

Summer break 09

2009-06-13T15:07:00.003-04:00

Hello everyone,

Well, this is the third week of summer break for me and Katie and we're lovin' it! Being off is nice - we usually just go to the pool or to a movie. Things like the zoo, the museum, and Whitewater will probably not happen. Tom could go but the only way he could get around is if he rented a scooter and he's not going to do that - he's too embarrassed to do so. I would take Katie by myself but I'm worried about leaving Tom alone for very long; he has bouts of numbness. It starts with a tingling in his arm, which eventually goes numb for a few minutes. You know, he tells the various doctors these things and I don't know what they do after they jot down the notes. I guess they just advise Tom to continue going to physical therapy, or to make an appointment to see the neurologist, or see his oncologist, or schedule a visit for the clinic. They seem to pass him off to the next guy. I suppose they're tired of not knowing the solutions.

At this point we are mainly concerned about his legs. This is ongoing - not getting any better. He can't feel his feet which makes it extremely difficult to walk. He gets winded whenever he is in a standing position for very long. For example, he'll make me a sandwich sometimes (his offering) and is just exhausted after it's over.

We went out to eat recently and upon entering the restaurant Tom didn't raise his foot high enough and tripped on a rubber mat. He fell on his face, scrapping his nose and breaking his glasses. It was not a big deal, believe it or not - pretty typical actually. A few employees helped us to a table and kindly brought Tom a small band-aide for his nose. Nice folks over there at Greenwood's on Green St. (and delicious food).

Soooo excited!

2009-06-01T12:15:00.018-04:00

Hello everybody,

Big news! We are finally going on vacation - to the beach! After two consecutive summers spent at the hospital, and permission from his physician we are finally leaving town and hittin' the surf. I can't tell you how excited we are. We're like children awaiting Christmas - marking off the days on the calendar. Katie and I are so worried that something will happen to Tom before we leave, and that we won't be able to go. We worry about him losing his balance and hurting himself, or winding up in the hospital for the 15th time in two years but he'll be fine. He's pretty self-sufficient these days aside from limitations due to his legs.

Things will be much different from the last time we were at the beach - before he was diagnosed with cancer. He won't be able to walk in the sand or come in contact with ocean water. He can't be in direct sunlight w/out long sleeves and a cap. However, just sitting in the shade by the pool with a good book, breathing in the salt air while sipping an ice-cold Coke, and looking out at the waves crashing on the shore will surely be a nice change of scenery for him. So much better than spending every day at home sitting in the shade provided by the living room ceiling in front of a loptop, while breathing in the stale air and looking out the window at the driveway waiting for something as exciting as the mailman to drive by.

This is going to be incredibly therapeutic for all three of us. If only you knew how trapped we have felt. I just cry when I think about it.

We owe a lot to Ralph, a friend of ours and co-worker of Tom's. He bought a condo at a beautiful new resort in Panama City Beach, and has insisted on several occasions that we spend a week there...at no charge. This is so generous of him, especially at this prime time of the year when he has no trouble finding renters. Here is the link in case you might be interested in staying there sometime in the future:

http://www.postlets.com/rts/1634333

Only 26 more days............

Major Tom

2009-05-04T16:19:00.005-04:00

I can provide you with photos of Tom once again - he bought me a new camera for my birthday. I turned 40 yesterday!

New goal amount

2009-04-29T14:53:00.001-04:00

$200 was too easy. We're moving it up to $800. Thanks!

Relay For Life

2009-04-26T14:31:00.004-04:00

Katie is preparing for the annual Relay For Life which is an event that raises money to help fund cancer research. This will be her second year participating and she is so excited. It's a meaningful way for Katie to feel like she's making a difference and helping her daddy.

To learn more about Relay for Life:
http://www.relayforlife.org/relay/whatisrelay#whatisrelay

If you would like to donate to Katie's school team or if you would like to purchase a luminaria in honor of a survivor, please visit Katie's personal link: http://main.acsevents.org/goto/katiecarter

She has a goal of $200 !!!

CNS-GVHD

2009-04-25T16:40:00.006-04:00

Tom was finally discharged last Thurday evening. The doctors determined that there was no reason to keep him in the hospital except that they were (and still are) worried about his instability on his feet. They actually kept him in the hospital a few days more than expected for that reason alone.

Anyway, they are somewhat baffled by his neurological problems. Here's the rundown of what has happened in the last two weeks:

* He had a major seizure and was admitted to the hospital
* A CT scan showed nothing (of course, it's pretty wimpy compared to an MRI)
* An MRI showed white matter lesions
* Cerebral fluid was extracted from his head, and showed nothing of concern, such as cancerous cells
* A spinal tap was performed in his lower back, which also showed nothing of concern
* A second MRI was done which showed no increase in the amount of white matter lesions
* They were going to perform a brain biopsy but cancelled it because it is too risky and they felt it to be unnecessary at this time (it hasn't been ruled out though).

We have seen so many doctors lately including two from the bone marrow transplant team. The doctor that was assigned to Tom after he was accepted for the transplant procedure last May, has concluded that Tom may have a very rare condition called CNS-GVHD. This stands for central nervous system - graft-versus-host-disease. As you may recall, GVHD is fairly common with transplant recipients; this occurs when either the donor's cells fight the recipient's body, or vice versa.

CNS-GVHD affects the brain. There is little information about it. The doctors have seen only a few patients with this. It is very difficult to determine if, in fact a person does have CNS-GVHD, and that is why the doctors are reluctant to assign this diagnosis to Tom. They are not absolutely certain. From the research I've done (verrrrry little info available) Tom does share some of the symptoms of patients with CNS-GVHD - white matter lesions, seizure, altered memory.

Let me know if you find any more info: lisa5369@gmail.com. Thank you.

It smells so familiar

2009-04-20T13:52:00.013-04:00

It's been very difficult obtaining answers from the doctors. I ask the same questions of each specialty physician and get vague answers. I wish I could get together with them all in a pow-wow and ask questions. I wonder if they would try and speak over one another, or if they would look at each other with raised eyebrows waiting for someone else to answer. My questions are mostly pinpointed toward his brain. I want to know what the white spots are that were detected on the MRI, if they are dangerous, what caused them. I want to know if the swelling has decreased. I want to know why he keeps having these olfactory deja vu sensations. He smells things - imaginary scents - that remind him of his past as far back as 35 years.

Tom's transplant doctor stopped in for a visit today. He wanted to see how Tom is walking, if he has improved. He wasn't pleased, therefore he will not release Tom for a few more days. He said that it's too risky for him to try and get around on his own at home. You should have seen the look on Tom's face - oh, he was sooo bummed out.

The doctor is ordering a spinal tap to take place today or tomorrow. They have already extracted spinal fluid from the region around his brain through the Ommaya reservior on the top of his head, but that showed nothing of concern. A spinal tap will be way more thorough and allow them to rule out anything. They are baffled.

The neurologist will be visiting sometime today. I hope I am still here because I have many questions written down. This is the doctor that I most want to see.

Tom is EXTREMELY disturbed about being on disability pay once again. He is grateful to have the option but he is still hesitant to believe that it was a necessary process. He feels that the communication wasn't there in the capacity that it should have been in order to make things work. His employers say that his memory was a problem and holding up projects. I really don't know, as I'm obviously not a part of that circle. I can understand how frustrated both sides must be (not to mention a bit saddened), but I lean more toward the side of his employers. His memory is a problem. They have been so patient with him and continue to stand behind him. They are truly one of a kind and Tom certainly does recognize that. Ultimately, he's just frustrated with himself.

Still in the hospital

2009-04-18T09:15:00.003-04:00

Tom decided to stay a whole week in our timeshare at Northside Hospital. No really, he has been there per doctors orders obviously. They are concerned about a couple of things:

1) white spots that appear on his MRI
2) his legs are now numb from the knees down

They've done CT scans, an MRI, an EEG. They took one extraction of spinal fluid from the top of his head, through his Omaya reservoir (the bump). One doctor didn't see anything to be concerned about - that was Wednesday. As of yesterday though, another doctor or doctors took another sample. I don't know why, I'm only assuming that the first doctor may have overlooked something. I do know that the reason for the extraction to begin with was to look for infection or new cancer cells. The results are not in for the second extraction yet. It's frustrating not knowing what's going on. The doctors don't visit very often and when they do it's so quick that it's difficult to converse. It's always a different doctor also. As my dad said, it's as if nobody's in charge.

Tom is receiving physical therapy every day. They have supplied a walker, however Tom insists on using his cane and I don't blame him. Why get him used to using a walker? Take advantage of his determination to use the cane!

His memory is a little slow but I think I'm probably the only person who would know this because I talk to him very frequently. It's probably caused by the seizure.

Tom is in the process of resuming long term disability (LTD). He fought this idea all the way. He really doesn't want to do that but he can't keep up with the pace of the projects right now. His colleagues are still just as concerned and willing to do whatever it takes to keep him on the staff. Let's hope that when the LTD comes to an end that Tom will be fully prepared to take on his role in the group. It's very sad to see him have to make this move. I believe he feels like a failure inside. Everyone is completely behind him though. They've gone above and beyond, as usual, to let him try.

Hopefully he will be discharged on Monday. If you live nearby please stop in for a visit. He needs it.

Overnight hospital visit

2009-04-13T13:05:00.003-04:00

Tom had a seizure last night at 4:00am. He called my name out and immediately had a grand mal seizure i.e. extreme tensing and shaking of the entire body, foaming at the mouth, eyes wide open looking into space, urinating, rapid breathing, talking nonsense/unintelligable speech, etc.

I called 911 and they sent an ambulance to our house and took him to the hospital. At this point, they are doing brain scans to determine what may have caused the seizure. He seems fine now, normal. As usual, he asked me to set up his laptop so he could do some work. That's Tom for ya.

CONGRATULATIONS!

2009-04-08T14:22:00.006-04:00

Tom has reached a major milestone this week: he was officially released from the BMT clinic. He no longer has to go to the clinic for regular appointments. Over the past year he has gone from having appointments every single day, to every other day, to twice weekly, to once weekly, to once every other week. From now on he will only have to go in for marrow biopsies every six months over the next two years. Yeah Tom!

Since I have this week off for spring break, I decided to go to the clinic with Tom - to say hello to all the staff and get out of the house. Well, we had no idea that this was going to be such a monumental day - I'm so glad I was with him when he received the good news and a certificate of completion which reads:

Certificate of Completion

Congratulations

Thomas Carter

On Reaching This Milestone With Your Transplant Therapy

Awarded on

April 6, 2009

I think I may be more proud of this piece of paper than Tom is. I held it facing outward on the elevator for everyone to notice. I told the cashier at Trader Joe's that we were buying this bottle of wine to celebrate Tom's.... blah, blah, blah. I found a way to sneak the news into a conversation I had with a fellow shopper in the store. What an obstacle we've overcome. I feel like breathing has become a little easier.

Hopefully that news closes the door on what felt like a bad dream, and bolts it shut. I feel like we're at the end of a scary movie - the monster has done his damage, mangled and tortured people, prepared them for a lifetime of paranoia - and finally he has been slaughtered and burned without a trace of existance. Roll the credits.

My handsome man

2009-04-02T21:53:00.007-04:00

Hey everybody!

Things are going great here in the Carter house. Tom is upbeat, working hard, eating healthy, working out, and thinking positively - he's doing really well. In one of my more recent posts I told you how weird his hair looked: frizzy, totally gray, and growing straight outward like a helmet. Well, he had his hair cut this week and I was totally shocked when I saw him. He looks SO great! I can't believe a haircut was that powerful. I swear he looks ten years younger. Not that I have anything against gray hair (I actually think gray hair is very handsome, seriously) but his hair looks more brown now.

He just looks so much better all around - the color in his face is pink and healthy, he's becoming more muscular, and he's on an upward spiral.

I'm so proud of him and his endurance as are you, I'm sure. Tom is a true survivor. He has his harsh, reflective moments, but those are fewer and futher between.

Hello shower!

2009-03-16T20:57:00.008-04:00

Tom, Katie, and I went out of town for the first time in nearly a year. Tom's doctors gave him clearance to leave Atlanta for a weekend as long as it wasn't too far away. We went to Knoxville to visit my grandmother and stay overnight in a hotel. Even though we were only 3.5 hours away from home it was still wonderful to be away.

Tom is feeling well and nothing has really changed. There is some exciting news though that I must share with you: Tom is going to have outpatient surgery on Thursday to remove his "lines" or port as some call it. Since his transplant a year ago, he has had to deal with three slim, rubber tubes hanging out of his chest about six inches in length. These lines served as a convenient way to extract and inject fluids, in the hopital and in the clinic. Without these lines, he would have been pricked and proded by needles on a daily basis. These lines provided a more humane way to access his veins regularly.

After his lines are removed and his incision area has healed a bit, Tom will be able to (drumroll, please).......... take a shower!!! He hasn't been able to shower in almost a year, confined to taking baths. Before each bath, he has to adhere to a ritual of putting Saran wrap over his lines and taping the perimeter of the wrap; this prevents bathwater from seeping into his lines. As you can imagine, there is a serious risk of severe infection with that scenario. Because of this he has had to really be creative in avoiding "that Saran area" when moving around in in the tub to wash his hair, rinse his back, wash his neck, etc. Let me tell you - he's a real contortionist.
Yoga + bathwater = sweet-smelling Tom!

Too long

2009-02-22T21:11:00.004-05:00

Wow, it's been too long since I last posted. I've been so unmotivated lately to do anything - I go to work and come home and lay on the couch. I do the minimum required of me at both locations and that's not nearly enough. I'm ready for Spring.

Anyway, Tom is doing ok. Currently, his only obstacles are his limited mobility, and his swollen, blueish-colored feet with dry and crackling toenails. Eeeeuw! I think Shrek would be jealous.

A week ago we had a major scare - the right side of Tom's body went numb. I awoke one Sunday morning to the semi-familiar sound of his troubled voice nearby - the same sound I have grown to associate with an impending 911 call. When I saw him he couldn't feel his right leg, and his right arm was also numb and it was making involuntary short punching motions. Tom had to firmly hold his arm to his chest to control it. After about five minutes it subsided and he was able to get up off the chair and walk. The next day he felt the familiar pin-prickling feeling begin in his right hand and he quickly took a seat in preparation for the whole "numb thing". This time, in addition to his arm and leg, the right side of his face was also numb.

I told Tom that if it happened again I was going to take him to the emergency room regardless of his begging and pleading. It hasn't happened since.

So, that's about it. I still have something I want to show you - that I mentioned in my last blog - and I will get that posted this week.

Thomas Jefferson

2009-02-05T21:53:00.005-05:00

Tom is doing fine. His appetite is strong. He drives his truck. He's working every day. He's still unsteady on his feet and relies on his cane to get around, but he's not letting anything stand in the way.

His hair is growing straight outward from his head, like an afro. He says he looks like Mr. Jefferson from the 70s tv show The Jeffersons, with his receding hairline and afro. I'll post a photo soon.

He has stopped taking a couple of his medicines because of the negative effect they've had on him. He had a gut feeling that these particilar drugs were the culprit in making him sick for so long. He felt that he had no choice other than stopping. It was either 1) feeling really ill and continuing to be hospitalized periodically and given more medicines to counteract the side effects of other medicines, or 2) stop taking them. The doctors are aware of this and have told him that it's a risk, however they are acknowledging his rapid progress with each weekly clinic visit and telephone call. I agree with Tom that those couple of medicines that he was taking were keeping him in limbo - not allowing him to progress toward a more healthy state of being.

Sometimes we have to overrule the experts because we know what is going on within ourselves far better than they do - we have but one patient. They do their best but they can't feel it - experience it - especially the emotional part of it all. Everyone has a limit and Tom reached his as far as the medications. He was to a point of feeling pure desperation... a fight or flight reaction.

His memory can be a little challenged at times but not too bad. It has interfered with a couple of work-related projects but I believe his colleagues understand that he suffered a brain injury a month ago but is recovering very quickly. I mean, he went from lying on his death bed (yet again) to coming home and resuming a normal life in such a short span of time. Speaking of death beds, I'm going to scan and post something this weekend that will blow your mind.

Other than wobbling around like an old white man with an afro, he is doing quite well. We're movin' on up!

Oops!

2009-01-15T09:18:00.003-05:00

Last night Tom and I had a BIG laugh while out shopping at an art supply store. After walking around a bit and loading up a bunch of "toys" for Tom, we walked to the front of the store to check out. I was holding a bunch of merchandise in my arms, and Tom was steadying himself with one hand on his cane and the other on a table. Next thing I know, I hear Tom say "Oh no". I turned to see his pants around his ankles on the floor! I was trying to put the items down and at the same time, hide him from a mother and her young daughter who happened to enter the store at that moment. Tom is not able to bend over, so he couldn't pull his pants up by himself. The cashier looked at us not quite knowing what to do (I don't think he'd ever been trained for that). Finally, we got the pants up and checked out. He couldn't keep them up without holding on to them. So, we walked out the door - me with the big bag on one arm and Tom on the other, and Tom holding his cane and hooking his other arm around mine, holding his pants up by his belt loop. What a sight to see!

Wow! Katie was not with us. She would have been so embarassed!

Magic pills

2009-01-14T12:27:00.005-05:00

Tom is doing very well. He's sleeping regularly and he has gained some strength in his legs. He's able to walk with a cane at home, but when we're out in public he needs me to stand next to him just in case he becomes unsteady.

The "magic pills" I'm referring to are steroids. In the past Tom has always significantly improved when put on steroids. It's when he's weaned that he takes a couple of steps backward. He's determined to fight this. He's very depressed and feels that he's running out of choices - it's like he's on a merry-go-round going up and down and round and round. He's tired of it.....really tired. He worries me sometimes.

First kiss

2009-01-13T08:26:00.002-05:00

We haven't been able to kiss one another for about a year and a half because of the risk of transferring bacteria. Yesterday we decided that enough is enough - we're tired of pecks on the cheek, so we actually kissed (innocently, of course!). Wow, what a liberating feeling. To heck with those doctors!

Be sure to kiss your loved one today, and think of us. :-)

Apathy is taking over

2009-01-11T11:48:00.000-05:00

Tom was discharged on Friday evening - just six hours after our "what if" meeting with the Palliative Conference gang. They like to scare your pants off - the chaplain is the ring leader - and then send you home. Just kidding, they are a nice group of people.

Everything just seems so bizarre as far as Tom's condition. There seems to be no real consensus among physicians. There are so many of them and they each seem to have ever-changing synopses of Tom's condition. Here is a list of people "tending" to Tom: primary care physician, bone marrow transplant physician, neurologist, cardiologist, gastrointerologist, physical therapist, nutritionist, and of course there's me and I know it all.

One physician says he has a clot in his heart and then a few hours later a different physician tells us that the most recent MRI showed no sign of a blood clot. Another physician tells us that Tom may have an infection in his brain, and still another physician says everything looks fine. Now he has signs of diabetes because of the insulin he's getting to counteract a high-dose steroid. It's all crazy! I don't understand it all.

None of them realize just how poorly Tom walks, because he was in a hospital bed the whole time and they couldn't see him in motion. He still can't walk without someone really supporting him, and I believe it's gotten worse - his feet function like seal flippers. I'm so thankful that his mind is funtioning normally though.

Tom believes that he is taking an unnecessary amount of pills. He's taking two different pills for high blood pressure (which is a new diagnosis, by the way), and two different antifungal prescriptions. It makes us wonder if one physician knows what another physician has prescribed. Our pharacist warned me about mixing two of the prescriptions, but the doctor I consulted about this said there was no concern. I believe pharmacists are a little more knowledgable than physicians when it comes to analyzing drug interactions.

With all that being said, there are always things to be thankful for:
1) being at home, 2) having lots of family close by, 3) having lots of concerned friends, especially the Stuarts who continue to go above and beyond by helping us with Katie, many times "at the drop of a hat", 4) having excellent health care insurance, and 5) LIFE!

Yawn...

2009-01-09T17:30:00.002-05:00

Well, the meeting was rather uneventful...but in a positive way. It was more therapeutic than anything. We talked about everything from my and Tom's past together, to Tom's love for cycling, to Waycross, GA (Tom's hometown). We talked about Tom's illnesses over the past 18 months (an edited version of an edited version). We discussed what we felt we needed from the medical staff - I said "more collaboration between them"..."more details for us". Finally, they explained the importance of the living will and power of attorney and blah, blah, blah.

I forgot to provide you with an info link about palliative collaboration, but if you're anything like me you've already done your research by now. Basically, it's a way to prepare a family at a time when the outcome of a patient is uncertain. They document the patient's wishes as well as goals, and give the primary caretaker information on his/her responsibilites in a time such as this.

Routine meeting?

2009-01-08T18:56:00.006-05:00

Tomorrow at 10:00am Tom and I will be the main event at a "Palliative In-service Consultation". The Palliative Care Nurse Practitioner, whom I just met shortly after arriving from work, described it as a "what if" meeting. I need to bring a Power of Attorney and Living Will - oh boy, if that doesn't freak you out then what does?

The other attendees: a physician, that nurse, a social worker, and a chaplain. Yep - you read it right.

I don't really know what to expect - I'm trying to keep positive thoughts. Tom's not at all bothered by this, therefore I'm not making a big deal out of it (although my mind is racing). He says it's just a routine meeting. Maybe he's right. My father said it may be just a legality to protect the medical staff before he's discharged. Funny...they've never required this before.

Tom looks very content. Not angry or sad as in his past hospital stays. He's good company to be around. I look forward to snuggling up with him in his hospital bed tomorrow. He looks forward to going home this week - let's keep our fingers crossed that he does.

Give him a call if you want. I'm sure he would appreciate it.

Where do I begin?

2009-01-06T19:50:00.013-05:00

A great deal has happened since my last entry. As you know, Tom was discharged from the hospital after his fall down the stairs, with orders to make an appointment with a neurologist, a cardiologist, and his primary care physician. Over the next few days (before any of these appointments) he began to sleep more and more. When he slept 18-20 hours on Saturday I called an advice nurse who told me to take him to the hospital. He was NOT happy when I told him that I was taking him to the hospital but agreed to go at my "crybaby" insistence. He was admitted on January 3rd and is still there.

Here's a breakdown of what's been going on - there's too much to detail:

* blood clot detected in heart because of weak heartbeat unable to pump sufficiently - doctors haven't made it a priority/not much concern
* unable to walk - weak legs - may have something called myelopathy which affects the spine, decreasing the funtionality of the lower extremities - not sure how long it will last - temporary wheelchair anticipated
* injury to two upper discs in spine - he's taking "fun pills" to counteract the pain
* altered state-of-mind for two days - very distant, unable to speak full sentences (he can think, but has trouble verbally expressing his thoughts), full incontinence (not symptomatic of the pain pills)
* suddenly awoke from altered state-of-mind yesteday just like he did during his coma in August
* presently awaiting test results from stem cell extraction done yesterday - hopefully will explain neurological problems

Sorry for the delay, but Tom asked me on the way to the hospital not to post to the blog because he didn't want to concern any of his colleagues. He didn't feel that this warranted any unnecessary attention and asked me to bring his office computer to him. Obviously, I have talked to his colleagues who are still just as understanding and insistent on helping in any way - just as they have been since the beginning. Thanks to everybody at IHG. :-)

He's doing great now - may get discharged this week. I'm going to keep him on a leash when we get home.

Meet Gizmo

2009-01-02T11:38:00.009-05:00

We have a new addition to our family. He's nine weeks old and so much fun! As you can see he really likes Tom.

Many thanks to Tom's sister Erin and her family for finding this kitten for us.

Back home

2008-12-29T17:12:00.002-05:00

Tom wasn't discharged from the hospital yesterday because of a sudden spike in his blood pressure. It was enough to concern the nurse, who decided he should stay for 24 more hours. He was discharged today though. He's very glad to be home. He was so depressed in the hospital and the absence of wifi only made it worse. He really wanted to do some work while he was there but he couldn't access the internet.

He seems a little groggy - I can tell that his memory isn't fully functioning yet. He can't walk unassisted. I'm going to have to rely on family to help us out after I return to work next week.

That's it for now...

Better website

2008-12-27T21:28:00.004-05:00

Here is a better website for info on ITP (Idiopathic thrombocytopenia purpura). That other website isn't very informational - rather a promotional site for Mayo Clinic.

http://www.mayoclinic.com/health/idiopathic-thrombocytopenic-purpura/DS00844

Just another bump in the road

2008-12-27T11:35:00.005-05:00

Tom is doing just fine! Other than a headache and some serious bruising he seems like the "normal" Tom. He's not saying random things anymore. The doctor said that he bruised part of his brain but that there is no sign of an aneurysm. He may get to go home tomorrow!

The doctors at the hospital where he is currently admitted as well as his bone marrow transplant doctors are concerned about his low platelet count. His regular, stable, safe platelet count has been 120,000. It is currently at 65,000. He may have something called ITP. I haven't done much research yet but here is a link for you and me both to study:
http://www.mayoclinic.org/itp/

More info as it becomes available...

Christmas

2008-12-26T17:05:00.007-05:00

Tom fell down the stairs last night around midnight on his way to bed. Katie and I were already in bed and heard a loud crash. Tom was lying on his back at the bottom of the staircase having a mild seizure lasting only about 10 seconds. He was so disoriented - he couldn't remember our address, what day it was, the date. He couldn't remember the Christmas eve gathering we had the night before. He complained of his head hurting. He saw that his glasses had been broken and said something like, "Wow! Did I do that?!" I showed him his glasses four more times after that and he had the same reaction each time.

An ambulance came and took him to North Fulton Regional Hospital, which is close to our house. When he was finally admitted to a room, Katie and I left. It was 6:30am. We came home, turned off all phone ringers, and slept for the next five hours.

Katie went to her best friend's house today while I went and spent some time with Tom. He is conscious but takes lots of "cat naps". He also says things that don't make sense, some of which are very funny! He told one doctor to go play with a banana. He also told his sister that he was going to have surgery to remove some tools, and that he would be going home the next day.

The doctor took an MRI last night/this morning and found some hemorraging in part of his brain. They are awaiting the results of a second MRI which was done this afternoon. If the bleeding has not stopped then they will likely have to do surgery to "mend a tear". There is a chance that he may have a brain aneurysm (or maybe one has already ruptured, according to the info in this link). Hopefulley they can rule that out with the results of the MRI.
http://www.mayoclinic.com/health/brain-aneurysm/DS00582

I feel like a bobblehead doll from lack of sleep. I'll let you know when I find out any news.

Two steps forward, one step back.....literally

2008-12-20T21:23:00.011-05:00

Well, Christmas is now only five days away. Katie and I have the next 16 days in a row off! This is good not only for a much needed rest, but also to care for Tom. It seems that in the past my time off from work has conveniently coincided with his need for extra care. This is true once again as Tom needs a little more help getting around lately.

He is having so much trouble walking because his feet are numb and sometimes painful. This is a symptom of neuropathy http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131. He has been battling neuropathy for several months and taking medicine for it (Lyrica), but it doesn't seem to be getting any better.

He can not go anywhere unaccompanied for he teeters so badly and falls into walls and shopping carts and parked cars - his cane helps only minimally. I really have to brace him. We do continue to go places though because he wants to get out - especially since he's been given the "go ahead" from his doctor. This is completely understandable to me.

I must say, I get very worried when we are out somewhere and thoughts rush through my mind - This is not a good idea. Why are we doing this? Tom is going to fall. I can't guarantee that I can keep him from falling. I may fall with him. I wish we were at home right now. What is Katie thinking of all this? Does she feel helpless?...

I find people looking at us more. Crooning their necks, double-taking glances, quickly walking past us to hold the door, asking if they can help, asking if Tom is ok, etc. Their reactions confused me at first but eventually I realized that his condition elicites compassion even from strangers.

It will get better. Next year at this time I see him rolling around on the floor with the dogs, karaoking his favorite songs, hanging up Christmas lights, laughing, and sipping Christmas spirits!

What's up?

2008-12-12T14:44:00.007-05:00

Not much here. We're just Christmas shopping in our underwear. Not really - that's just my description of the convenience of online shopping. Why would anyone go to a mall when you can have curb service?

Tom's dust incident has shown no signs of trouble. In fact, the doctor has already stopped the antiviral that he resumed Tom on after he inhaled the dust.

Currently, Tom is bothered by fatigue and numb feet. He describes his feet as feeling like you do when your hand or foot falls asleep and then "wakes up" - all tingly. I suggested that we put little bells on the tips of his shoes so that he'll know when his feet have touched the floor.

Monday was Tom's sixth-month post-transplant consultation with his doctor. He had to have a bone marrow extraction even though he had one last month. Poor Tom - it's an excruciatingly painful procedure. He yells into a pillow while they hammer a think needle into his hip. We haven't received a call from the doctor so, as we've been told in the past, that's supposed to mean good news/nothing to worry about.

Bye for now - I'll send some pictures real soon...

Thanksgiving, etc.

2008-12-03T08:03:00.004-05:00

Happy belated Thanksgiving! I hope you all enjoyed yours as much as we did. Instead of me running around and trying to balance a pie on one finger, a turkey on my foot, a bowl of green beans on my other finger, and a bowl of mashed potatoes on my head (just to name a few), while trying to set the table and keep the dishes rotating in and out of the dishwasher like last year, I had lots of "delicious help". We had a great big potluck style dinner. Tom's father brought the turkey, his brother brought some macaroni and cheese, my father and brother brough a dessert, snacks and drinks, and I made a few fail-safe family recipes. It was all good - so good that Tom ate two huge plates loaded with food. Mmmm...

We have our Christmas tree up and it's beautiful! Tom is really getting a lot out of the Christmas feeling that seems to be enveloping our house - the tree, little village displays, music, movies, etc.

Tom is doing fine. He's still a bit wobbly on his feet and has to take deliberate steps but he gets around pretty good. He's had a few incidents - one in which he fell and crushed a small wooden, lightweight trashcan in the bathroom in the middle of the night. He scratched and bruised his back pretty bad, but he got back up. The other incident should probably be considered a little more serious. Tom went to grab a magazine which I accidently threw away, out of the trashcan. Well, I didn't know he was reaching into the trashcan any more than he knew I had emptied the vacuum cleaner dust earlier. When he reached in, a puff of dust blew into his face. Now, he's not even supposed to be in a room that was recently vacuumed - the dust has to settle for a few hours. So, he got the concentrated amount of something he his supposed to avoid.

We looked at each other silently and took a deep sigh. What now?

A little while later he called the doctor who told him to start taking an anti-fungal medicine again - one that he had finally quit taking last month. There is now a chance that he could develop pneumonia because of that dust...