Saturday, October 10, 2009
Has it only been a month? It seems like so much longer. Itís so hard to believe how much the lives of everyone in my family has changed in one month. One month ago today, September 10th, we learned that Tommy has pancreatic cancer. Since that time, everything in our lives have changed.
Before that day, we were worried about baby Maddie, who sadly passed away on September 6th. We were worried about finding new jobs. Now we worry about saving Tommyís life. The last month has been a roller coaster of emotions. We try to stay positive and focus on the tidbits of good news we get from his doctors, and we try to ignore the negative. Iíve learned more about cancer than I ever wanted to know in my life, but knowledge is power.
I canít know exactly what Tommy is thinking or feeling because Iíve never walked in his shoes. I often look at him and wonder whatís going through his mind. Sometimes I ask, but he usually just avoids the question. I feel like Iím caught in a whirlwind that I canít escape. At times I want to run and get in my car, start driving, and just keep on going. That would be the easiest way; to run away from everything. But then I look at my husband. I still want to grow old with him. I love him more than Iíve ever loved any man in my life. I know I could never walk, or run, away from him. I know he would be there for me if the situation was reversed. I know he needs me now more than heís ever needed me in his life. This is simply our life right now and we have to work with the hand we were dealt.
In a previous blog I said that I had realized that cancer is more a personal thing than a family thing, that I could not fight Tommyís battle for him, but rather only be there to encourage and comfort him. I couldnít have been more wrong. While itís true that this is ultimately Tommyís fight, cancer does affect the entire family. I have to fight also, just in a very different way. Iíve realized that Tommy is not only fighting cancer; he is now also fighting sadness and depression. My husband who has always been easygoing and carefree, happy and positive, now spends much of his time lost in his own thoughts. While I cannot know for sure what those thoughts are, and he doesnít seem ready yet to share many of his thoughts, his facial expressions reveal worry and sadness. My fight to keep my husband alive involves arming myself with as much information as possible, asking questions of his doctors, making sure he has everything he needs to help in his fight, getting him to and from his appointments, making sure he eats to keep his weight from continuing to drop, encouraging him to exercise to maintain muscle mass, and supporting him emotionally as best I can and try to keep his attitude positive.
On the rare occasions when he does open up and talk with me about his thoughts, he reassures me that he is ready to fight for a cure. But then at other times he often seems to have accepted just the opposite fate. He will occasionally start talking to me about being safe when Iím hiking in the future, never including himself. He wants to give mini lessons on the weed eater, leaf blower, riding mower, cleaning the furnace filter, checking the oil in my car, etc. Itís as though he is trying to prepare me for his absence.
Family and friends that we havenít seen in years now stop by to visit with him, but they look at him in a different way. Not sure what to say to him, but wanting to help and encourage him, they try to smile and tell him heís going to get better. But the look in their eyes deceives them and itís obvious they donít truly believe their own words. The first few days after his diagnosis, everyone was telling him he could beat this thing and they reminded him that Patrick Swayze was still alive after being diagnosed with this. Then, the day of Tommyís Whipple procedure, Patrick Swayze passed away. Nobody talks about Patrick Swayze anymore, except Tommy.
The hardest thing about cancer, other than the possibility of losing someone you love, is that it is there every minute of every day. When you go to a fall festival, it is still there. When you go walk through a park, it is still there. When you get together for your grandchildís birthday party, it is still there. No matter what you do or where you are, it is always lurking somewhere in the back of your mind. There is no escape. Two of my sisters and their husbands are coming for Thanksgiving, and I canít help but wonder if weíll all be together again next year. The doctors tell you to go and enjoy your lives together, but truly having fun becomes so much more difficult when youíve been given a 1% chance of survival.
The last month has been incredibly busy with doctor appointments, and still more to come. We spent yesterday visiting his surgeon for a follow-up and then had to go to Forsyth Medical Center for a pre-anesthesia visit. Tommyís surgeon will be putting in a port-a-cath on Monday morning. This is a small device that is placed just under the skin in his chest that is connected to a large vein. This will remain in him and be used by his oncologist to administer his chemo treatments. We expect that will start either the end of this month or early next month. Tommy will have chemo every week for about 8 weeks, then he will begin receiving radiation (along with the chemo) for about a month. After the radiation is finished, he will continue chemo for about another month. It is a very aggressive treatment plan, but then pancreatic cancer is a very aggressive cancer, so this is really his only hope. With two thirds of the lymph nodes they removed having cancerous cells in them, anything less would probably be useless. He will also be having a PET scan of his entire body next week. This will document the changes to his anatomy from the Whipple procedure and reveal the presence of any other cancer in his body. This makes me very nervous, but it is necessary.
So here we are, one month later. When we were making our plans for the future, this was definitely not part of them. Nevertheless, this is what we have to deal with. We will continue to take it one day at a time and pray for the best outcome possible.
Thanks so much for all the kind words of support.
Wednesday, September 23, 2009
As many of you already know, the last few weeks have been a roller coaster of emotions for my family. We thought things were as bad as they could be when I was laid off from my job and then my husband was told he would also be losing his job in October. Then came the death of my niece's 20 month old baby, Maddie. That was heartbreaking for the entire family. When my husband was then diagnosed with pancreatic cancer on September 10th, we were devastated. Suddenly, our jobs were the very least of our worries. I have written several blogs about this, and so many of you reached out to me with encouraging words of support of caring.
When I joined SparkPeople over a year ago, I was just looking to lose some weight and get back into shape. I was very encouraged when I saw all the wonderful resources offered by SparkPeople and immediately began taking advantage of all that was offered. I was thrilled with how successful the program was and how I started getting back into shape and losing the extra pounds. I knew SparkPeople would continue to be a part of my life. What I didn't immediately realize was that SparkPeople is much more than just a weight loss program; it's a community of people coming together to support each other in all areas of life.
In the last couple of weeks I have received so much support from so many of you. Your words of encouragement have meant more than most of you will ever know. Tommy and I are truly blessed with all of our family and friends, and the SparkPeople community has been a very real part of my support and strength. I have found a certain amount of comfort in being able to write about my feelings in these blogs and not have to burden Tommy with them with all he is going through. There have been times when I wasn't sure if I would have the strength to deal with all of this, but the support we've received and Tommy's determination have helped me to stay positive and keep encouraging him in his fight.
Tommy was discharged from the hospital yesterday. It was my birthday and that was the best birthday present I could have received. Even better is that he was able to come home without any tubes. Dr. Marterre originally said he would be on a feeding tube for about 3 weeks and that most patients who have the Whipple Procedure that Tommy had would spend 8 to 14 days in the hospital. Then of course the emergency surgery to stop the internal bleeding further complicated his situation. Even so, Tommy's determination to get better and go home was amazing. By day 7 he was back on a normal diet and his feeding tube, along with his surgical drain tubes, was removed yesterday before he was discharged. He still has to have daily injections of a blood thinner to prevent any clots, so I was taught how to do that and successfully gave him his first injection at home this morning, something I was very afraid to do, but it went well.
The road ahead is a long one, but we'll get through it with the help of our family and friends. I am so thankful that I am a part of the SparkPeople community with all of the caring members who have reached out to support us during this time in our lives. I only hope that I will have the opportunity to offer words of support to others as I have been supported during this time.
SparkPeople has been such a positive influence in my life. I am so thankful for the founder of this site and for all the awesome members. I plan to be a part of this community for a long time to come. SparkPeople is indeed about much, much more than just weight loss. Thank you all so much.
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.
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