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glo

Lost my husband -- (long)

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I posted a short while back in the introduction forum.

My husband who's been under treatment for COPD for three years or so, began having upper back pain in March -- doctor sent him to physical therapy -- WITHOUT TAKING X-RAYS!

Finally did a CT scan on July 10 and discovered a tumor on his left lung that had eaten into the ribs and the shoulder blade. On July 28 had a needle biopsy and was referred to an oncologist. We didn't see the report, but doctor said it was NSCLC - squamos - and stage III or IV.

Received prescriptions for increasingly stronger pain meds through the period from May or June through August 8, when he was admitted to the hospital through ER -- one week before first apptmt with oncologist.

He had been walking around, taking care of his own personal hygiene needs, warming food in the microwave, etc. up until one day before going in the hospital. On August 8, he woke and needed my help to walk from bedroom to living room where he sat in the recliner -- meds kept him relatively pain free and he was coherent and lucid. As the day went on, I realized he could not get out of the chair and called an ambulance. They took him to UC Davis Medical Center, which got us away from our MedClinic group -- whom I had lost all faith in -- and to a hospital with a reknowned cancer treatment center.

At UC Davis Medical Center he had many, many tests and was admitted to the oncology floor. Orthopedic surgeon talked to him the next morning and proposed surgery to stabilize his spine. The tumor was compressing the spinal column and two vertebrae were virtually disintegrated as well as the ribs and scapula involved. Who knows how he had been walking in that condition.

Surgery was successful and after a few days he moved to rehab unit because although he had feeling and movement in his legs, they were very weak. He was doing ok there, although it was pretty strenuous for him with his lung condition. Had consultation for radiation and had the mapping done.

Then the surgery site became infected. This wasn't caught right away because he did not have a fever. Immune system was probably suppressed through the steroids he was taking to make breathing easier and to reduce inflammation from both surgery and tumor. The surgeon had to open the wound and wash it. He warned that this sometimes has to be done several times. This weakened him more, but he continued in the rehab unit -- they reduced the goals for him from walking to just transferring from bed to wheelchair, etc.

Then, sure enough, back to OR for washing the wound a second time. Surgeon felt he had controlled the infection and wouldn't have to do it again, but Chuck's heart rate was elevated in the recovery room and they put him on a heart monitor. Also developed a lot of congestion which they decided was pneumonia. He had previously said he wanted no breathing tube, or other life support, but when the doctor said a breathing tube might be temporary and he might kick the pneumonia and go on to other treatment he opted for that -- temporarily only. So they inserted the tube and moved him to ICU with a ventilator. ICU team conferred with him and they decided on 48 to 72 hours and if condition did not improve to remove the tube.

My daughter and I stayed with him through 48 hours and watched his condition steadily deteriorate. About an hour before the ICU team did rounds and talked to us he had stopped responding to us altogether.

We knew it was time to take out the tube. Mercifully, he breathed shallow breaths for only five minutes and peacefully stopped. My daughter who is 28 was so strong through all this. She made sure that he always understood the consequences of any treatments and was able to ask him if he thought he'd see Greg (our son who died after a motorcycle accident in 1998). He said yes and she told him that she and I would be ok and look after each other.

Ironically, our son died on Aug. 31, 1989 (Labor Day weekend) in UC Davis Medical Center in the SICU unit. My husband died Sept. 1, 2003 (Labor Day) in the same hospital and the same ICU unit. My daughter and I are ok with that. It seems a sign that they'll be together.

I know from my son's death that you do not ever get over it, but you do somehow get through it, but right now it hurts so bad and the world is once again so out of kilter that ordinary things are amazingly difficult to do. When I watched him suffer and struggle, I knew I'd gladly take his pain if it could make him whole, but now that he's gone and I do have the pain it's awfully hard to bear.

My daughter and I will get through this. We're planning to visit my mother who will be 89 this month and is in remarkably good health and also visit some of my husband's sisters who weren't able to travel here. And I'll return to work, probably this week.

For all who have posted here about a loss -- my condolences -- I know what a long road we all have ahead of us and I feel all the things each of you have written about.

I have exchanged PM messages with Natalie, who is also in Sacramento and a couple other members on the board, but did not have time to post much during the 3 weeks when I was spending 12+ hours a day at the hospital. I'm so glad I was with him that much, even though friends kept telling me to get more rest and save my strength for when he comes home. Therein lies the problem -- do what you can today, because nobody is guaranteed tomorrow.

Gloria

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So sorry to hear of your loss. My prayers go out to you and your daughter. I lost my DH in December, 2002, so I can relate to the pain you are experiencing. My husband also had spinal tumors and we worried about compression throughout his illness. If you need anyone to chat with, please contact me. I know from experience that it helps to talk to understanding people and this board has many of them!!!

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Dear Gloria,

I am so sorry for your loss. I felt like I was back at the hospital with my dad when I read your story. I have a hard time reading about everyones situation because it just hurts all over again and my heart keeps breaking over and over again for me and all of us here. I cant figure it all out, so I keep telling myself one day I will know why. I am glad you have found someone in your area to help you through this difficult time. Cancer is a horrifying disease.

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Gloria,

Tears are flowing down my cheeks for I just don't understand how this tumor could have been so overlooked...it sure seems like we are still in the middle ages with medicine....

My heart goes out to you and your daughter. The loss of two loved ones over Labor Day is unreal...Life sometimes is to hard to bear, but we must carry on for that is what life is all about.

Please except my deepest sympathy for your loss.

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Gloria

My heart is breaking for you and your daughter. What a heavy burden you have to bear. It doesn't seem possible to have such poor medical treatment in this day and age, but I read about it on these boards everyday. I am so sorry for you loss.

Annie

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I'm deeply saddened to read of your losses. I can only hope that you find solace in the words of comfort from the many who care for you.

The way you describe your husband/s early diagnosis and medical mismanagement is so similar to my wife's experience. An early diagnosis of mild COPD followed eventually by a severe and persistent pain in the upper part of the back, between the shoulder blades. Yet, during five weeks of medical observation at a prominent municipal hospital, all the medical people involved dismissed the idea of lung cancer. Even when asked directly if this possibility had been explored.

Well, someone obviously hadn't done their job or exercised proper initiative. Which is why a friend of mine who is a judge referred me to one of the top malpractice attorneys in the state. That firm, even without charging a retainer, has agreed to do the research to see if there are sufficient grounds for a suit. It's a matter of public record that the attorney won a 55 million dollar jury award against a large metropolitan hospital after its initial attempt to have him accept a 1.9 million dollar settlement.

My adult daughters, who tend to be aggressive in these matters, tell me they don't care about the money. They just want it on record that the hospital staff mismanaged their mother's care. I agree with them that money's not everything.

But it's something.

Mainecoon

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So sorry for your loss. One thing you can do to honor him is to spread the word! Seek second and third opinions, I am a nurse and I know we all want to believe Drs are all good and in the practice for mans wellbeing. Believe me I have seen some bad Drs. :evil::evil::evil::evil::evil::evil::evil: I pray for your family for the peace you deserve.

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