Saturday, September 19, 2009
The last couple of days have been so busy. On Wednesday they moved Tommy from the ICU to a regular room. This made him very happy because now I can sleep in the room with him at night. Actually, I donít really sleep in his room because nobody sleeps in hospitals. I actually do several back massages on him throughout the night (and day) because he hurts from laying in a bed for so long. Iíve been told that heís informed all the nurses he has his own private massage therapist :) At least that makes him happy.
Tommyís been very strong through all of this, but of course he has those expected tough moments. The biggest thing Iíve noticed is that he seems to be afraid to be left alone now and he wants me in his room most of the time. I make sure there is always someone there with him if I leave for a while during the day. As I type this, I wonder how heís doing tonight. His sister insisted that I go home and get some sleep and she would spend tonight there with him. I want to be there for him whenever he needs or wants me and I feel a little guilty for not being there tonight, but being in my own bed right now is also really nice and Iím looking forward to some true sleep. I just wish he was here with me.
I laid there in his room last night thinking about how our lives have changed in one short week. It seems so much longer than that. I worked at Cancer Services for a couple of years providing free massages to cancer patients. Many of those people wanted to talk to me while they were receiving their massages; I suppose it helped them to vocalize their fears. I always wondered just how drastically their lives had changed after their cancer diagnosis. But it was one of those things that always happens to other families because neither mine nor Tommyís families have any history of cancer that we know of. At least thatís what I thought at the time.
When his doctor sat down to talk with me and his sister after the endoscopic ultrasound, we were listening carefully to what he was saying. But then I heard him say, ďWhat I saw on his pancreas is a fairly large mass.Ē I can honestly say that Iím not sure what all he said after that. I did hear the word cancer at some point, and those words just kept going through my mind. I still donít know what those cancer patients at Cancer Services felt like because Iíve never been diagnosed with cancer, but I do know what their families were going through. I also now realize how personal a diagnosis of cancer is. I would love to be able to jump in and fight this disease for Tommy, but I canít. I realize that this is his life at stake and his battle to fight. All I can do is to be there for him, to support him, to encourage him, to love and care for him, and to help him find every tool and resource available to aid him in his fight. My concern now is keeping his spirits and hopes high so that he wonít give up.
So, one week later, I look back at all that has happened in seven short days and Iím still overwhelmed and a lot more exhausted. And I canít even imagine how Tommy feels. Just a little over a week ago, we were talking about possibly visiting my sisters in New Mexico and Florida during the next few months. Instead, we will spend that time doing whatever is necessary to give Tommy a fighting chance against this horrible disease. All of the little things that I used to stress over no longer matter. This diagnosis puts everything into perspective and makes us understand what is really important in life. All that matters now is doing whatever I can to support my best friend and husband in the fight of his life.
Saturday, September 12, 2009
The good news for the weekend is that Tommy's doctors allowed me to bring him home for a few days. But only after much lecturing and me promising to administer all of his meds over the weekend and keep him on a clear liquid diet Sunday. He had told them he just wanted to come home and sleep in his own bed a few days.
It's now 6:25 a.m., but I've been up since 4:45 a.m. Just couldn't sleep; too many thoughts swirling through my head. I finally got up because I didn't want to wake Tommy. For the first time in a couple days, he appeared to be sleeping soundly. I'm glad because I spent the night before with him at the hospital and he was up and down all night long.
I know he's happy to be here, but at the same time, without all the distractions that come with being in a hospital, he has more quiet time to reflect on his situation. There were a few tough moments last night, but we got through them with tears and hugs. There will be many more. We both admitted that we are scared to death. He is afraid because he is facing his own mortality and upset because he wants to see his grandchildren grow up. I supposed I'm a little more selfish; I'm terrified at the possibility of not having him in my life. I know we will all have to face our own mortality someday, but I'm just not ready to give him up at this age. That's why I will not give up on my husband and I will continue to fight this thing as long as he is with us.
I'm hoping today will be a good day for him. My son's best friend, Will, is married to the great-niece of Benny Parsons (for those who don't follow racing, he was a famous Nascar race driver and later announcer). Benny Parsons' home is about a 90 minute drive from our house. Tommy loves Nascar racing, so Will is planning on taking us to see Benny Parsons' museum and some behind the scenes stuff that visitors don't normally get to see. We're supposed to go up at noon today and Tommy seems excited about that. Maybe this will allow him to get his mind off things, even if just for a while, and enjoy his weekend.
I don't know what will happen on Monday when he has surgery, but from this point forward we will take things one day at a time and make the most of every day.
I thank all of you so much for the support you've shown in your kind comments and the private messages I've received. It truly means so much to know others are praying for us. It also helps me a lot just to be able to write all these feelings down. Thank you all so very much.
Friday, September 11, 2009
All my life I've tried to be a very positive person, and I'm still trying now, but it seems that these days every time I write something in my blog it's negative.
I'm astonished at how my life has changed over the last year. This time last year, Tommy and I were doing well, living a comfortable life, and making lots of plans for the future. One year later, our entire world is turned upside down.
In May I lost my paralegal job when the law office where I had worked for over 15 years closed permanently. Tommy told me not to worry, that even though the job market in our area is very bleak, we would be fine and get through it together. I'm still looking for a job.
He encouraged me to go ahead and go on my hiking trip in Arizona that I had been planning. I did so and had a fantastic time.
In July we learned that Tommy's employer is shutting down and his job would be ending in October. Now he began to worry, but I tried to encourage him that no matter what happened, we still had each other and our health and we would get through all this together.
The news of little Maddie's death last week was very hard to swallow, but again, we pray and continue to move forward.
Yesterday, after a short two weeks of what we thought were some minor medical issues for Tommy, he was diagnosed with pancreatic cancer. He is scheduled for surgery on Monday morning, but his doctors are not very hopeful for a good outcome. They said his cancer appears to be advanced and they don't know what they will find in surgery. The best case scenario they've given him is that if the surgery is successful, he may live 3 or 4 years, but they said realistically most people have 6 to 12 months.
I am numb as I sit in my husband's hospital room today trying to be strong for him. At the same time, my sister is preparing to bury her granddaughter today while calling me and trying to support us. It's just mind boggling that our lives one year ago were so different from today.
I am trying so hard to be strong for my husband, but he is the one who is being so incredibly strong through all of this. I can no longer say that at least we have our health. All I can say now is that we will take things one day at a time and get through this together.
I sit here today, a day that already holds so much sadness for our nation, and think about all that has changed in our lives over the past year, and I wonder what the next year will bring. I wonder if I am strong enough to handle this, and then I look at my husband, my best friend, and see how strong he is and know that I am so fortunate to have him in my life. With the help of God, family and friends, we will walk down this path together.
Thanks to my Spark friends for being so supportive during these rough spots in the road. Please go and be with your loved ones and enjoy every day that you wake up healthy. We never know how long we have on this earth or what tomorrow will bring.
Sunday, September 06, 2009
No parent should ever have to bury a child. Yet thatís what my wonderful niece Stephanie and her husband Jimmy are now facing. At only 20 months of age, baby Maddie lost her battle against Leighís Disease today. She was born on December 31, 2007, but very early in her life Leighís began to take its toll on her tiny body. She always had a smile on her face and was a fighter to the end. Unfortunately, this cruel disease was too tough an opponent for such a small child.
Maddie had been placed back on a ventilator on Friday before slipping back into unconsciousness. After talking to her doctors and her neurologist, Maddieís parents had to face the harsh reality that their little baby girl was not going to improve and that the end was near. They made the heartbreaking decision to remove her ventilator today. Being the loving parents they were, they did not want Maddieís last moments to be inside of a hospital room. Maddie had always loved to play outside in the park, so they took baby Maddie into their arms and carried her outside into the hospital play yard filled with flowers and sunshine. There they held and hugged their sweet angel until her soul slipped peacefully from their hands and into the hands of God.
Maddieís life was much too short, but she was a blessing to her parents and everyone around her. She will be greatly missed, but the memory of her smile will warm us forever.
Thank you all for your thoughts and prayers during Maddieís struggle. I hope youíll continue to pray for a cure for this disease as so many other children are fighting this same battle.
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