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|July 30 - August 5, 2009
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The Odyssey and the Apathy
The journal of Jeanette Oxelson
Last year I signed up for Denver Health’s Indigent Care program. Except for getting my vision prescription checked, this would be the first time in years I had needed any medical help.
Eight years ago I had a good job and good health insurance. Then the company went under. I kept up health insurance on my own for several years while I worked various part-time jobs. (After 9/11 jobs were scarce, almost non-existent for anyone over the age of 55.) But the insurance company kept raising my rates until I was paying almost $400 per month with a $5000 deductible. Any doctor visits had to be completely covered by myself. Luckily, I was in good health. The last straw was when I fell and broke my wrist. I had to pay the total cost of $2500, plus the monthly insurance that was gaining me nothing and I just couldn’t afford it any more. So, I reluctantly joined the ranks of millions without health insurance.
Wednesday, Nov. 5, 2008: This morning I found a lump in my breast. It was already the size of a dime and easily felt. I tried to convince myself it was nothing, but common sense won out. I was immensely relieved I had signed up with the Denver Health CICP program.
Thursday, Nov. 6: This morning I called the CICP appointment line I had been given last summer. Thomas told me I would have to see a Primary Care Physician first to get an order for a mammogram and, after explaining about the lump, he transferred me to the Radiology Department. I left a message there, giving them my Medical Record number and told them about the lump.
Friday, Nov. 7: I called the Radiology Department again this morning and left the same message. I didn’t leave the house all yesterday or today for fear I would miss the call-back. Trying to keep a positive attitude, I decided my “mantra” was going to be “It is benign, it is benign, it is benign.” No call again today.
The weekend was a blur. I truly believed, after getting the message that I had found a lump, I would get a call sooner. I was trying so hard not to think of the word Cancer, it became the only thing I could think about. Denver Health’s own web site states the importance of getting a lump checked out quickly.
Monday, Nov 10: I left a third message at the Radiology Department this morning. I received a return call later in the afternoon and was again told I couldn’t have an appointment without a PCP. I told her about the lump I’d found and she seemed surprised – didn’t they listen to my message? She suggested I call the Breast Clinic and gave me their phone number, which I called right away. Again, no answer so I left the same message there.
Tuesday, Nov. 11: The Breast Clinic called this afternoon and said they could give me an appointment for Dec. 4th. (Seems to be a magic date!) Again I stated that I had already found a lump and, again, the lady seemed surprised. I was again told I would need to see a PCP for an exam before I could have a mammogram. She gave me a different Breast Clinic appointment phone number and stated the best time to get through was at 7:00 am Wednesday.
Wednesday, Nov. 12: Called the Breast Clinic at 7:00 this morning and finally got in after several tries. It turned out this wasn’t another number for the breast clinic but instead was for the Mobile Radiology unit, which I was told doesn’t have the equipment for mammograms! I was given another phone number, which I called and left my message. This time I stated first that I had found a lump, thinking that then they might actually have to listen to the whole message in order to get my phone number.
Thursday, Nov. 13: At 7:30 a.m. I called the same number the Mobile lady gave me yesterday and left my message again. For the fourth day in a row I haven’t been able to leave the house, run the vacuum, or take a shower for fear I’d miss the call. Since they close a 4:00 p.m., by 3:00 I figure I’m not going to hear from them today. My resolve to remain upbeat is really flagging today. I keep trying to repeat my mantra “benign, benign, benign” but it’s getting harder and harder to do.
Friday, Nov. 14: I called again at 7:30 a.m. and left my message. I received a call back about 10:30 and was excited until I discovered I was talking to Thomas once more! He began to tell me all the same things he had told me a week ago when I informed him of all the numbers I had been given and the fact that I was right back where I started. He said he’d give my number to someone who might be able to help – so I’m waiting again.
It’s now been over a week and the lump has definitely gotten bigger, more like the size of a nickel than a dime. I’m praying it’s my imagination until I realize there is an equally-sized lump under my arm on the same side. Deep down I know it has to be Cancer but I’m still trying to convince myself it’ll turn out to be something benign.
11:30 am: Thomas again. He tells me I have to re-enroll in the CICP program because my card has expired. I tell him I have the card in my hand, that I had re-enrolled in July, and it says it doesn’t expire until July 2009. After several minutes arguing with him, he says he’ll see what he can do and call me back.
12:30 pm: This time it’s a lady named Terry. Like Thomas, she tells me that I have to see a PCP at the Family Medicine clinic in order to get a mammogram. I feel like I’m on a merry-go-round. She says I’ll have to call the Family Medicine clinic again and just wait until Dec. 2nd for an appointment. Or I could call the Westside Clinic Monday at 7:00 am and see if they have any times I can get in sooner. She also gave me a number for the Nurse Advice Line, who she says may be able to help me get an earlier appointment.
I call the NAL line and, after several tries, I talk to a very nice RN, the first person who seems at all sympathetic. She tells me to call the Women’s Care Clinic. I try the number several times and each time, instead of getting a person or a recording, the call disconnects. When I finally do get through they tell me there are no appointments for 2 weeks but I can check with them for any cancellations if I call Monday at 7:00 am. I have a feeling I recognize the number she’s given me to call and, sure enough, it the number for the Mobile Radiology unit, who already told me they don’t do mammograms!
Saturday, Nov. 15: Tonight I was poking around on the Denver Health web site and discover there is something called the Adult Urgent Care Clinic that I can go to without an appointment. (I had already been told several times by several people that going to the emergency room would do me no good.) AUCC is in the Denver Health hospital building so I figure they should be able to get me in to see an actual doctor and they’d also have the mammogram equipment right there. I feel like I haven’t gotten anywhere these last two weeks and I need to do something physically – not just on the phone. My anxiety level has been like a roller coaster.
Every time I get connected to someone I think might help, I relax a little and tell myself everything is going to be alright. Then I find I’m getting nowhere again and I’m terrified I’ll never get through this seemingly impossible maze.
Sunday, Nov. 16: I arrive at the AUCC at 10:00 am and am happily surprised there aren’t that many people waiting in line. After 20 minutes a nurse arrives with a small pad of forms. We each fill one out and put it in a big box with a slot in the top – like we’re trying to win a drawing. I guess we are. After about an hour my name is called and I’m finally going to see an actual medical person, in person! The RN takes my temperature and blood pressure, asks some questions and gives me a cursory breast exam. When she finds out I’m not in pain, I’m not running a fever, and I’m not having any fluid discharge from my nipples, she tells me my problem is not urgent enough and I should call one of the family clinics. I always thought if a cancer is causing pain, fever and discharge, it had probably already gotten to the point of no return. She gives me a list of all the outlying clinics. Several of the places I’ve already tried to get into are on the list. She also tells me that waiting another 2 weeks is not going to cause any problems despite the fact that the lump is getting bigger. Another day, another dead end, another handful of Tums.
Monday, Nov. 17: At 7:00 a.m., on the dot (as Terry told me to do last Friday), I call the Westside Family Health Center. The outgoing message says they don’t open until 8:30 and to call back then!
8:00 am: I decided to try DH’s Webb clinic. Honestly, this just gets nuttier and nuttier. Their first available appointment is Dec. 2nd but they can only make appointments 2 weeks in advance. Dec. 2nd is a Tuesday and since this is Monday, I have to call tomorrow at 7:00 am. I’m also told they don’t actually make the appointments at the clinic and to call the original appointment number I used on Nov. 6th – the same place that has twice sent me on this wild goose chase! I’m really beginning to think I’m doomed and I’m terrified!
Someone, in the myriad phone numbers and unhelpful people from last week, suggested I retrieve the mammograms I had had taken back in 2000, when I still had insurance that was actually any good. I walked into that nice, clean clinic with all the smiling, helpful faces and just wanted to grab one of them and beg them to please, please help me. I cried all the way home.
Tuesday, Nov. 18: I called the Webb clinic and went ahead and made an appointment for Dec. 4th. (Yesterday they wouldn’t let me make an appointment for Dec 2nd because I was a day early for their “2-week limit”. I call immediately when the clinic opens and get Dec. 4th. If all their appointments are two weeks in advance, how come when I called Nov. 6th, four weeks in advance, I’m told the earliest I can get an appointment with a physician just to get a mammogram is Dec. 4th?
11:30 a.m. – My Significant Other (who has insurance) called his own physician and told her of my symptoms and the problems I’m having. She says I should definitely NOT wait until Dec. 4th and then rearranged her schedule to give me an appointment tomorrow. To say I’m relieved is an understatement! For the first time in two weeks I feel as though I may actually have a chance to live through this!
Wednesday, Nov. 19: Dr. Kelly examined me and immediately put in a call to Lutheran Hospital for a mammogram and ultrasound. She told me to get over there right away because she had asked them to make room for me as soon as I arrived. (“Don’t even bother to park”, she said. “Use the valet service.”) The ultrasound showed the breast lump had grown to approximately one inch in diameter and also showed two lumps under my arm. They requested a biopsy STAT.
I’m beginning to realize now that I’m completely on my own if I want to save my life. I have no idea how I’m going to pay for all this but at least I’ll have the opportunity to do so. I’m starting to think about what I have at home that I might be able to sell.
Thursday, Nov. 20: I’m back at Lutheran for the biopsy. I was chatting with the nurses before and during the procedure and told them what I had been going through. I had no idea Lutheran also had a financial aid program but one of the nurses took it upon herself to go to the finance office and brought back the necessary paperwork for me to fill out. They then explained my best option would be to go to the Caritas Clinic at St. Joseph Hospital as Lutheran’s financial aid was somewhat limited.
Since that time I’ve had an MRI, which also showed three lumps in the lymph nodes, met my surgeon (whom I really liked), and had my surgery at St. Joseph (with excellent care). Caritas is covering all the costs; a godsend since I haven’t even been able to work part-time for two months. Most of that time was wasted because I had to stay at home for fear I’d miss a call from Denver Health.
The diagnosis was Invasive Ductal Carcinoma, a particularly fast-growing type of breast cancer.
I received a call a few days after my surgery from Kelly, the manager at Caritas. Someone had told her what I’d been through and she was dismayed Denver Health hadn’t immediately referred me to the Women’s Wellness Connection. She was also surprised the RN at the Nurse Advice Line hadn’t given me that information either. Women’s Wellness Connection would have immediately put me on Medicare due to the cancer diagnosis and covered the costs for any other health problems I may have, not just the breast cancer. I also received a call from the director of the Komen Foundation who also wondered why Denver Health didn’t tell me about the Women’s Wellness Connection, especially since Komen donates a lot of money to DH.
As it stands, I owe almost $6,000 for lab fees, the mammogram and ultrasound, and the biopsy that took place before I got to Caritas.
I realize Denver Health deals with an exorbitant number of people every day and I truly believe their medical staff is the best. But there needs to be some way in the screening process to get people who have breast cancer symptoms the necessary treatment without having to wait until they’re so far gone help must be on an emergency basis or even too late to do any good.
I shudder to think that had I stayed with Denver Health my cancer might have gone to Stage IV and my recovery would have been a lot less sure.
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