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Been awhile...???'s about the care my hubby had =(


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I'm sure no one will remember me much....but I have some questions and I'm posing them here because I know alot of you are very educated about NSCLC. At the bottom of the email...I'm enclosing my original introduction to everyone here.....it is rather lengthy. My question is this...do any of you feel that my husband was done wrong? Should he not have had a knife put to him? I feel in my heart he was done so terribly wrong and so does the doctor (pulm. spec.) at the hospital where he died.....It was a year on the 25th that my hubby passed away and I'm having a very hard time overcoming the anger I feel towards the doctor. If anyone has any advice for me....please email me at bclark@sugardog.com .... Thanks so much .... Becky

First off, I want to say a quick Hello to all of you! I've been reading through the boards since early January and just never had the time to post. Things around our house went so quick.

I don't know how to make my story short, but I will try.

My husband and I found out we were having a baby last spring and we were both so delighted (my second and his first). Well, after I had my triple screen test, the doctors thought something might be wrong with the baby, so we were sent to a bigger hospital to get a level 2 ultrasound done. Well, at that point the doctors discovered that what they had originally thought was wrong with the baby wasn't (Thank Goodness) but they detected something was wrong with his heart. So, from then on, we had to travel 125 miles one way for fetal echocardiograms up until the baby was born.

Ok...my hubby had been having headaches from like August on, but he didn't want to go to the doctor, he kept saying, let's get the baby here and then I will go and get myself all checked out. I tried to get him to go but he was adament about waiting until Bryce got here. Well, beings we were traveling so far, we had our induction scheduled and Nathanial Bryce was born Dec. 22nd, 2003. The day we were to leave to go home my hubby woke up throwing up and could not walk a straight line. So, needless to say, I ran out of the room and got my nurse and she called someone for a wheelchair and he was wheeled down to the ER. That was at 4:00 in the morning. I didn't hear from him again until 9:30 when he called and told me that they had done a CT scan on him and found 2 brain tumors. Then they also scanned down and discovered a spot on his left lung. Shortly after that, he showed back up in my room. We went for a walk and just talked and cried and cried some more. Why us? It just didn't seem fair. Here we were, just had a baby and then this horrible news? But we were determined to fight it .... TOGHETHER! Well, before we went home, hubby was sent home on Decadron, that seemed to help with the headaches, but it is a horrible medicine. What are you gonna do though, he needed to be on it.

From there we had our appointments to line up. We met with the Neurologist and he thought hubby was a perfect candidate for the Gamma Knife procedure. But before that was definitely decided, we had to meet with the lung specialist. Well, the lung surgeon sure painted a pretty picture. He just kept telling my hubby, "I can go in there, take your left lung out, get whatever lymphnodes might have been affected and before too long you'll be chasing that baby around" So, of course, hubby grabbed at that picture...and so did I. He just kept saying over and over again, "you'll be chasing that baby around soon". So, hubby had the Gamma Knife procedure done on Jan 26, it went very well! And then he had another appt with the lung doctor while he was in the hospital for the Gamma Knife. Well, the lung doctor had mentioned that he may need some chemo or radiation first, so we were waiting on that. But then all of a sudden, the lung doctor went ahead and said, no we don't need to do the chemo / radiation, "I'll give you 2 weeks after the Gamma and then I'll go in and take that lung out and you'll be chasing that baby around before you know it". Well, hubby went in for the lung surgery on Feb. 9th. He stayed in the hospital 4 days. When he got home, I noticed that it was not healing like it should have...pussing alot. So, he went to our family doctor and they did cultures on it and come to find out he had a staph infection. So, our family doctor told him that he needed to go see his surgeon. Well, hubby made an appointment to see his surgeon and his surgeon decided to go back in and open him all the way back up to clean up that staph infection. And when he was done, they left a huge hole in his back (bigger than a fist) and hubby had home health nurses coming 2x's a day to pack it with kerlex (sp) and saline solution. Well, needless to say, my dear dear husband passed away on March 25, 2004. 7 days after his last surgery. They sent him home from the second surgery with MRSA. He died at a hospital closer to home. By the time he got to that hospital, the doctor there told me that his body had already started to shut down. I miss him so much and not sure how I'm ever going to manage. I just think it is so da_ _ unfair. Here he had his first baby, a little boy and he couldn't even take care of him. He was in and out of the hospital so da_ _ much and so da_ _ sick all the time. I think if hubby was told the "BIGGER" PICTURE in the beginning things would have been alot different. Even if he would have only lived 3 months, maybe they would have been better quality if no surgery was done. It's just really hard for me since fathers day is Sunday and dear hubby's birthday is at the end of the month. My husband was only 36 years old. And now I have to try and figure out how to let my son know just how much his daddy loved him through pictures.

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I am so very sorry.

My brother died just 4 months after his diagnosis and left behind a 3 year old son. It is devastating. It is a nightmare. There are no words to comfort you, I know.

I am so sorry for your grief. If only we had a crystal ball in the beginning to show us which decision would be the best based on the certainty of the reading of that crystal ball...

We make decisions based on what knowlege we have at the time.

I was given a choice to have treatment or not. It was a big decision for me to accept treatment, since I had lost two brothers already to lc. They survived 4 and 6 months after diagnosis. I had advanced lung cancer. I chose to go for treatment. I never dreamed that I would see my 50th birthday...coming up in a couple of weeks! Never! I could not imagine it. What if I would have declined treatment? I don't know. Would the cancer have killed me by now? Or would it have regressed on its own?

I have no answsers for you, only to wish you somehow find peace in your world. You deserve peace.

All the best to you.

cindi o'h

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I certainly am not the one to ask about how the Dr. performed or didn't perform. I do understand, however, what you are going through right now. My hubby also passed away unexpectantly at age 29, when our son was only 9 months old. Basically his heart just stopped while at work and we had no clue. The shock and then anger that comes with our kind of loss takes a long time to come out of. I had many people at the time of his death telling me to pursue something legally with our PCP or workman's comp, but I did not. I guess now, 4 years later, I wish I had because money could sure help out right now. On the flip side, I really can't picture myself having the energy or drive to go through anything legal, I just wanted him back...I just had to get myself together for our son, who is a beautiful 5 year old today.

I guess I would say that if you feel like you have the energy to go through a huge battle, go for it if you believe in your heart that there was malpractice. I would not, however, expect that even if you won your case would you feel any better emotionally, it just takes time. I am still angry somedays...Hang in there and if you need support, please pm me.

Lori : )

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Becky, Your story touched my soul.... I had not read it before and I feel so badly that you had to go through all of this. I don't have any answers, but I do want you to know I am praying for peace of mind for you. The only bit of advice I can offer you is that you did not make the medical decisions for your husband alone, your husband also made decisions on what he wanted - Please don't beat yourself up. Love, Sharon

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