Let me introduce myself. I blog here and on the internet as moe99. I am a government attorney living in Washington state for the past 28 years.
I have been a member of Group Health Cooperative, one of two medical cooperatives in the nation, since 1983. My three children were born at Group Health, and they were treated there throughout their childhood for inoculations, colds, even whooping cough once, and various broken bones. My needs were met there as well, for the most part.
But two weeks ago, I was diagnosed with lung cancer, and the delays that are part of the normal Group Health experience make no sense at all in the present context and may operate to diminish my chances of full recovery. Let me explain below.
This summer I spent a week at a summer music camp in August, singing with several choirs during this period of time. It was an incredible experience, one so totally outside my normal days. To practice music instead of law for 6-8 hours a day was amazingly regenerative for my soul. I came back with what felt like a new vibrancy to my life as a result of the intensity and the joy of spending the week with others who loved music as much, or more than me.
So the hoarseness I started experiencing the week after, I attributed to overuse during my music camp. And then when it got worse, I stopped using my nasal inhalant, which I had begun this past spring for allergy symptoms.
Finally, the Sunday of Labor Day weekend, I visited the urgent care center at Group Health Capitol Hill, where a physician's assistant did a strep test (negative), blood work up (also negative) and looked in my throat. Looked good to him, but he could hear that my voice was reduced to a whisper so he suggested I do a self referral to an ENT. Which I did the next day and an appointment was made for Wed. Sept. 9. The ENT doctor, numbed the back of my throat, and put a tracheoscope down and looked at my vocal cords and instructed me to say the vowel "E." Twice. He then removed the scope and told me I had a paralyzed vocal cord. His recommendation was to do a ct scan w/ contrast dye to rule out cancer. "The last one that I did that turned out to be cancer was 5 or 6 years ago, so the odds are good for you," he told me.
The CT scan was done on Sept. 16th and I was told that I could get the results when I returned to the ENT's office on Sept. 18. Curious, I called my primary care physician on the 17th, and asked if she could just tell me what the ct scan results were before I went in. "The results aren't all back," she told me, "so you can get them when you see your ENT." I later saw the ct scan narratives and they had been finished a half hour after the scan had been taken.
On Sept. 18, I went into the ENT's office and was told that in fact the odds had run out for me. In fact the ct scans showed that there were two growths in my lower left lobe and one in the upper left lobe of the lung and there was involvement in the mediastinal nodes which probably were pressing on the vagus nerve just before it enters the larynx, and thus causing my almost total lack of speech. "I've referred you to a pulmonologist who will set you up with other doctors as needed." He told me they would call me. Now if you have ever been a Group Health member, you know that when they tell you that, it means that unless you want to wait a week or so, YOU have to call them. So bright and early Monday morning I called the pulmonologist, who called me back. He said he had reviewed the ct scans, and based on that he was referring my case to a very good radiologist who was going to take a portion of the growth from my lower left lobe so that they could send it to pathology to be analyzed to determine exactly what kind of cancer it was. He gave me the number for radiology which I called immediately and eventually spoke to the radiologist.
The radiologist told me that he knew that he had an appointment available on Friday, but that I had to call to make the appointment. And that if the lab would not give me the Friday appointment, I should call him back.
I called the lab. I eventually spoke to the person in charge of appointments for needle biopsies. She said the first available time was Oct. 8! Keep in mind that this was September 21. October 8 was 17 days from then. In fact we have not even hit October 8 as of the date of this diary! If I had been a less aggressive health care consumer, I could still be waiting for this!! But I spoke up firmly and got the Friday appointment. The needle biopsy was done Friday the 25th.
The results of the needle biopsy were not good. Taken together with the ct scans, it appears that I have Adenocarcinoma of the lungs with lymph node involvement at the mediastinum. Surgery seems not to be indicated due to the placement of the tumors. And there was not enough biopsy material to get a detailed read on the makeup of the tumor. I got the news Monday September 28. An appointment to meet with a medical oncologist and a radiation oncologist was set for October 1.
At the meeting with the oncologists on Oct. 1, which took over 4 hours, I was told that the oncologists believe that this is a stage 3-B tumor rather than a stage 4, which means that I have a chance for remission and recovery. At stage 4, they said they could only do palliative care. But in order to know for certain whether it is a stage 3 or a stage 4, they needed to do a PET scan, which is a full body scan and a brain MRI. Each of these tests will help determine if the cancer is confined to the lower lobe of the left lung or if it has metastasized to some other part of my body. If it was "only" a stage 3, then they want to do a mediastinal node biopsy to obtain more of the tumor, so that a more precise definition of its make up can be made and the chemotherapy can be more uniquely tailored to the type of cancer I have. The doctors told me that they had put in orders for the PET scan and the brain MRI that day, and that someone from Group Health would call me the next day--Friday, October 2 to set them up. The mediastinal node biopsy will only be set up if the other tests show that the cancer is not in any other organs.
Once again, I did not take them at their word on Group Health calling me. My daughter, who was with me for the oncology appointment, got into the car after our meeting with the doctors had concluded at 4:45pm, and called Group Health immediately to schedule the PET scan. She was told that the PET scan scheduler was not there and that they would call me the next day. She then called and was able to set up the brain MRI. First date available: October 12.
So, this morning, again not waiting for Group Health to call me, I called them to schedule my PET scan. I called a number of times over the day and always spoke with the same woman, who refused to give me the name of anyone else that I could talk with. She told me that the PET scan order was with "the committee" who would determine whether to ok the procedure for me or not.
wtf? I thought to myself. How could they think I didn't need the PET scan?
Then, during our last conversation at 4:15 pm, after talking with me throughout the day, the PET scan scheduler finally broke down and revealed that it typically takes 2-4 business days, at a minimum, for "the committee" to process the request and either grant or deny it. I can appeal if they deny it. WTF??? I said to myself even more loudly--some lameass committee populated by bureaucrats is going to take their own sweet time to determine if I DESERVE a PET scan? Now correct me if I'm wrong, but it seems to me the reason that cancer is such a danger to humans is that it grows like a weed, eventually overpowering the organs that it takes over. Wouldn't time be my greatest enemy right now, especially if I were at a stage 3-B?
It took less than 3 weeks for the tumor to destroy my voice. I has been two weeks since the initial diagnosis, but I have been in the Group Health system now for close to 4 weeks. Why does the Group Health 'committee' think that this can be treated like elective surgery?
The kicker came this evening when I went over to a friend's house for dinner. This friend is a doctor at one of the other hospitals, a highly regarded surgeon. She told me, when I informed her of my situation, that if I had been her patient, all the testing would be done by now. All of it. The most important part, she said was getting the final diagnosis in so you can proceed to treatment. It seems that at Group Health, the most important part is the process, not the patient.
I am damn angry with the Group Health bureaucracy for their inability to distinguish between serious, urgent health care situations and more mundane ones. I emailed the medical oncologist today, asking if he could intervene to move this process along. He wrote back that he could not. Again, wtf? Who is in charge here? The doctors or the office help? I feel that Group Health has treated me a fashion that is not up to current medical standards.
Taking a look at the present timeline, it appears that it may be more than a month after my cancer diagnosis, before the testing and staging will be complete, which it must be, before I can sit down with my health care professionals and get my treatment started. The treatment will be brutal, I have been warned. Both radiation and chemo at the same time if I am in stage 3. I want this to begin, even though I know what it will do to my body because I know that waiting will not make it better. Group Health does not seem to see it that way. I fully realize that I am lucky to have health care. But fat lot of good it will do me, if by slow walking the process, Group Health diminishes my chances of recovery.
So, in conclusion, I would just like to reiterate that while Group Health has been good and even excellent in treating average illnesses and injuries, and that while their doctors are fine caregivers, the organization itself is not coming through when the illness become critical and time is of the essence.
Think about it as the dialogue on health care reform continues. This is not acceptable.