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Posts posted by glo

  1. 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.


  2. Thanks to all who replied. And yes, Don, my name is Gloria.

    I'm 60, my husband is 65.

    We made a trip to the emergency room today, because even though he's on two 50 mcg fentenyl patches every 72 hours and Norco every 2 hours, he could not get relief from the pain today. Every breath and movement hurt and when he used his combivent inhaler it hurt a lot to breathe it in deeply. Our niece who is a nurse in Tyler, Texas had told us that she felt the Norco as breakthrough medicine was not effective and he probably needed Roxanol or another form of morphine.

    The ER doctor contacted our primary care doctor and gave my husband a shot of Dilaudid and a prescription for Roxanol -- guess niece knows her medicines. He said he can still take the Norco also if needed. ER doctor asked if we had seen an oncologist and I told them we received a call today confirming that the referral had been processed and the oncologist will call us. I have his name so if he doesn't, I'll be calling him tomorrow. The ER doctor asked if hospice had been mentioned to us and said the oncologist will probably offer external radiation as palliative care. BUT I think he had no biopsy report -- just had talked to our primary care doctor. I certainly intend to seek another opinion and also to explore all options for treatment.

    The new medication did seem to give him some relief and he was able to sit up in a chair for at least half an hour this evening. First time he's been able to do that for several days. He's very shaky on his feet, but insistent on doing as much of his own care as possible -- really only lets me cook and bring him food - of which he eats little, but does usually manage at least a fruit smoothie or instant breaksfast with fruit once or twice a day and a few nibbles of something from time to time.

    I feel strongly that if he can get relief from pain for a decent interval of time, he'll be able to fight this.

    If I change medical providers, it won't be effective until Sept. 1, so we feel we have to at least hear this oncologist out and hope he can keep my husband strong enough to get to a better facility. My phone calls were cut short today by this trip to the ER. But I did talk for quite a while with a helpful person at 800-4-cancer and she led me around the website to get materials on treatment, clinical trials, etc.

    I read another post where the caregiver asked the oncologist before the visit to please stress living and fighting and not to be negative. I hope to have a chance to do that also.

  3. Thank you Ada W.

    I do, indeed, intend to seek a second opinion.

    And yes, am realizing how important it is to get things in writing and get copies of reports. I now take notes and go to the computer right after each visit or phone call to type them up. Along with documenting his condition each day.

    Have not yet gotten copies of records, but it's one of my next steps. I'm not at all confident that our primary care doctor handled his treatment correctly from the start.

    We belong to Blue Shield HMO and the practice group we've been with does not seem to have many specialists in any areas. So I'll be contacting them to see about switching to another group. UC Davis Medical Center here in town is a teaching hospital, and I noticed the other day a large building downtown titled Sutter Cancer Center, so I have some research work cut out for me.

    Of prime importance is that my husband in no way feels this is hopeless and he's ready to do whatever it takes.

    Thanks again.

  4. Found this board the other day. Seems to be a great group of people.

    Sorry this will be a long message, but I need to vent.

    My husband was recently diagnosed with lung cancer. He had been receiving treatment for COPD for about 3 years. In March he began having pain in his back, near his shoulder blade, which he didn't feel was muscle strain, but thought it would pass. At his regular April 15 checkup he asked the doctor about it and the doctor thought he might have twisted wrong or something and separated some ribs. He gave him a shot of something? prescribed some Vicodin and said if it wasn't better in a couple days call back.

    When he called back, the office staff gave him a referral to physical therapy without x-rays :evil:

    The first few visits they had him do exercises. When he told them the exercises caused pain they said to stop and they applied some type of patches (he thinks something "ionic") which totally stopped the pain for a while, but on subsequent visits they couldn't seem to find the right spot again and the patches no longer helped. They said they would call his primary care doctor and tell him to do diagnostics. Receiving no call, he called and told the staff that he was in pain and almost out of Vicodin and PT could not help him. Still took them a couple weeks to get him in to see primary care doc.

    Doctor walked him next door to x-ray lab and told them to do a chest x-ray at once. They returned results to him immediately and he said the pleura was inflamed and there was scarring on the left lung. He thought the scarring might be from his bout with pneumonia a couple years ago.

    Requested authorization from ins. co. for CT scan. Took over 2 weeks to get the appointment (doctor says ins. co. denied request and he had to argue with them) Vicodin prescription renewed several times during this period -- pain increasing all the time.

    July 18 discussed CT scan result with primary doctor. It showed tumor at top of left lung, eating into ribs and scapula. Doctor gave a new prescription for Norco and Clonazepam, and referred him to an internal medicine doctor who is board certified for pulmonary medicine.

    New doctor explained types of tumors and set appointment for biopsy to determine type and stage so that treatment could be explored. Pain was relatively under control at this point, but within next couple days increased greatly. Dr. authorized Norco to be taken every two hours, and if Clonazepam makes him too sleepy -- it was knocking him out a majority of the time and taking away his feeling of controlling his own treatment -- he could take it just at bedtime.

    Biopsy performed 6/28 -- despite calls to both doctors' offices and refilling Norco and requesting other pain killer -- Duragesic (Fentanyl) patches -- not until this morning were we able to discuss the results of the biopsy. Dr. confirmed that it was cancer -- yeah, we know -- and said it's Non Small Cell -- probably squamos cell -- and stage III or IV. Doesn't think it's operable, but suggests radiation. He'll arrange visit with radiology oncologist.

    He didn't seem to want to talk further -- I got the feeling he thinks there's not much to be done. I see no point in discussing with him because he's not the one who'll be doing future treatment, but like all of you on this board there's no way we're not gonna push for any and all treatment available.

    I've told both doctors that treatment has to begin quickly because his pain increases daily and he already can only sit upright for about 5 minutes before he has to lean back or lie down. God bless whoever invented the recliner chair!

    I've also told both doctors offices to get used to me -- because I'll be on the phone every day until I get the oncologist appointment. I've been a basket case -- calm times getting shorter and panic times longer, so last week got a prescription for some generic zanax which takes the edge off. I'm psyching myself up now out of sniveling stage to "give us action or plan to spend a loong time explaining to me why not".

    We're blessed with a wonderful 28 year old daughter who lives in town and she and I both have state jobs which allow us a lot of leeway for time off.

    I'd appreciate if anyone who has had similar experiences could help us know what to expect from the radiation and what questions or demands to make of the doctors.

    Thanks for being here.

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