Cancer; A Personal Story
Created | Updated Jan 21, 2005
Cancer is a very serious disease. I was recently diagnosed with lung cancer. While I take the diagnoses and treatment seriously, I have not been able to overlook the humor and irony that is always a part of even the most serious of subjects. My little story contains some of these and may not be as serious sounding as some feel a story about such a serious disease should be. This is my personal story from my perspective. If it offends anyone, I apologize.
About two months ago I went out to my little desert place in Borrego Springs to do some work I had been putting off. The “cute little” Kangaroo Rats the desert is known for were digging onto my screen porch through a 3” wide strip of dirt between the slab and the skirting. Every trip out I would find rather impressive piles of dirt that I literally had to shovel into a bucket and carry outside. I was tired of the constant cleanup so I decided to dig out the 3” strip of dirt the full length of the screen porch and fill it with concrete. Knowing there would be a lot of concrete dust as well as rodent dust, I borrowed a breathing mask from our manufacturing department at work.
When I got to the desert I drove right by my place and on to the hardware store to buy the concrete. (I have a tendency to let jobs go if I stop at the house first to relax.) With six bags of concrete in the back I headed back up the hill to my place. After opening the place up and turning everything on I started on the job. The first step was to remove the always present piles of dirt on the slab and dig the trench. I got the bucket and shovel and headed to the car to get the mask. About half way there I realized I had left it on my desk at work. I went to the car and looked anyway, but I was, indeed, maskless. Now, the hardware store can’t be more than three miles from my place and I’m sure they have masks for a few bucks but between my place and the hardware store is a little bar and grill called Karlee’s that has delayed more than one work project in the past so I decided to just get started.
It was a hot day in the desert (a little redundant I guess) so as I dug the trench and mixed concrete I took frequent breaks when I’d worked up a sweat to go inside and cool off in front of the swamp cooler blowing on high. Toward the end of the job, between the dust I was breathing and the day long hot to cold to hot transitions, my lungs were feeling a little tight. The next morning they felt as though the concrete may have set in them during the night. Needless to say I wasn’t feeling well and was just a little mad at myself for being more than a little dumb. Thank God I was able to get over these negative feeling and down to Karlee’s for lunch and a couple beers. I hate totally wasting a beautiful day in the desert!
By the time I left for work on Monday the chest pain and cough had changed to what felt like any normal bad cold. This lasted a week or so then it changed to feeling more like the flu. Another week or so it was better. Then bad again. During this time there were reports on the San Diego news about the “deadly” Hanta Virus being found in the County. One of the rodents tested positive for carrying the virus was the Kangaroo Rat of East County. This gave me a couple days of interesting thoughts, but the symptoms were all wrong so I let that go.
Finally it became obvious this wasn’t going away on it’s own so I decided to bite the bullet and go to the doctor. My medical group has a weekend clinic and I didn’t want to miss work so I went there Sunday expecting hours of waiting. I was the only patient there and my regular doctor was on duty. Some form of fate I suppose. After going over the symptoms and listening to me wheeze a few times, and since I was the only patient among a dozen or so bored medical professionals, they immediately took me for a chest X-Ray. I waited as they processed it. The doctor returned and told me it was Pneumonia and prescribed an antibiotic. He then said that there was also an annoying little spot they were going to need to check more closely. He was going to refer me for a CT Scan. I’m on an HMO so I decided I wouldn’t hold my breath (even if I could) waiting for the referral.
The referral was in my mailbox Tuesday when I got home from work. I was very impressed, until I opened it. I had been referred to Children’s Hospital in San Diego for the CT Scan. It was too late to call but the next day I called the appointment number at Children’s just to see what the deal was. The appointment nurse got quite a kick out of it. Next I called my medical group to report the error. Turned out the place I was supposed to have been referred was in the same building as my regular doctor. I was given an appointment for Thursday.
The CT Scan is a pretty mundane test. You lay on your back, hold your breath a few times and they run you through this big donut shaped machine. The surprise for me came at what I thought was the end of the test. As they slid me out of the donut the nurse came in and said that she would now put in my IV so they could inject the iodine. I knew she wasn’t joking because she was standing right next to me with it in her hand. So with the IV installed they slid me back in the donut. When they inject the iodine you get an instant flush feeling all over and a metallic taste in your mouth. Not horribly unpleasant but not mundane either.
When I got home from work that night there was another referral in my mail. It was to an Oncologist to go over the results of the CT Scan. Their office called me the next day before I had a chance to call them. They had already made an appointment for me for Monday. I’ve never been real big on following doctor’s orders but the speed of this unHMO type service lead me to believe this was important enough to change that pattern. Monday I picked up my scan as they had instructed and went to the appointment.
When the Oncologist came in I think I already had in the back of my mind the thought that this wasn’t going to be good news. He calmly explained to me that there was definitely something there. It could be a benign tumor, a malignant tumor or, just possibly, a virus of some kind. (Hanta Virus, let it be Hanta Virus my mind thought until it remembered the “deadly” part of that disease.) One more test was required to finally tell once and for all what it was. A Bronchoscopy. The news was bad but the tests were getting worse. The Oncologist explained that this test involves a long flexible tube with a camera and a tiny tool on the end of it. They put this down your throat and into your lungs to first look at the tumor and then take a biopsy. The most troubling thing to me was they use “moderate” anesthesia. I gag when I brush my teeth so this test was not good news for me at all. The good news was there would be little time to dwell on it. The doctor “assumed” the insurance would approve the test and they had me scheduled for 6:30AM the next day before I left their office and went back to work.
You can’t drive yourself home from a Bronchoscopy so my buddy Jerry (who is not a morning person) agreed to drive me to the hospital. I rent him my guest room during the summer so at least he was here so I could wake him up. We got to the hospital on time and I was in a bed with my backless gown on by 7:00AM. There was a TV in the room so I turned on the morning news and laid back to watch and wait. Before long a nurse came in to take my vitals and to have me sign the obligatory paperwork. Soon a second nurse came to hook up an IV and give me a shot to relax me. (I was practically asleep already.) At exactly the right time the morning news had a story about Horrible Hospital Mistakes. The nurse with her back to the television turned to look and as they showed some stock footage of a hospital scene I said “hey isn’t that you?” She thought it was pretty funny but the other nurse didn’t seem to get the humor. The happy nurse explained it was a joke and she was fine. A half hour later they wheeled me through the halls to the room where the test would be done. The vitals nurse was gone now and we had a new nurse for an assistant. As they hooked me to heart monitors and all kinds of tubes the original nurse started to explain the operation again. I asked her about the “moderate” anesthesia. She said I would know what was going on but it wouldn’t bother me. She showed me the 3/4 full syringe and said she would only need about half of it. I suggested that my knowing what was going on would bother me and offered her five bucks to use it all. She chuckled and said okay. Even though I knew she didn’t mean it it made me feel better. The doctor walked in the room, said hi and the next thing I remember is waking up in the recovery room.
One thing recovery room nurses have in common is they will not give you water no matter how thirsty you claim to be. Part of the preparation for this test was nothing to eat or drink after midnight. After the test I fully expected at least a glass of water. This recovery room nurse was very nice but explained that I was not allowed to have anything until I had been awake for 1 1/2 hours. Protesting would do no good so I just laid back down and watched the nurses waking up the other patients just coming out of anesthesia. It was actually pretty entertaining. Exactly 1 1/2 hours after I woke up the recovery room nurse walked toward me with a tray. She explained that as soon as I could drink something and not get sick she would call my ride. (I resisted the temptation to tell her I could have done that an hour and a half earlier.) Then she handed me the tiniest little peel open cup of apple juice I’ve ever seen and a tiny straw to match. The juice was gone before she could turn to leave. “Would you like another one” she asked. “Would you bring two and a regular size glass of water please” I replied. On her way back she asked if I would like a muffin. I nodded and soon had a normal size blueberry muffin. When the two little “apple shots” and blueberry muffin were gone the nurse came back over and asked if I felt okay. “Better now, thanks” I said. I guess it was obvious I wasn’t going to get sick. She removed my IV, gave me back my clothes and called Jerry.
Two days later I sat in the Oncologist’s office again waiting for the final results. I expected to get the results from a different doctor as mine was scheduled to leave on vacation the previous day so I was surprised when my regular doctor walked into the room. “Hey, I thought you were on vacation” I said. “I put it off a day” he replied. “I wanted to talk to you.” He went on to review the three possibilities we had discussed before and then said that of all the bad news, this was the best we could have hoped for. Seems my lung cancer is the small cell variety. Less common and by far the most receptive to treatment by Chemotherapy. He reviewed the pros and cons (mostly cons) of Chemotherapy but by this time I wasn’t really hearing much of what he was saying. Instead I was having a feeling that must be similar to what people feel who have won the lottery. Whatever Chemotherapy had to offer I would gladly accept for a chance to get out of this thing in one piece.
Again, my referral to the cancer center that would do my Chemotherapy came within two days. The center is located about three miles from my house and two miles from my work. Absolutely perfect, I thought. They once again had scheduled my appointment for me and once again I accepted their timing without question or complaint. It was on a Monday morning. When I arrived I was very impressed with the facility. A very large free standing building, open and airy with a feeling unlike most medical facilities. I signed in and was called to come in within minutes. A very nice nurse took me to the exam room and took my vitals for the third time in a week. (I felt like I should just have them printed on a card so I could present them each time I went in and save time.) Soon the Oncologist with whom I would deal during treatment came in and went over the procedures and, again, the pros and cons of Chemotherapy. He also said he was scheduling me for a bone scan just to see if the cancer had spread. It would not change the treatment he explained, but if it had spread they would want to keep an eye on those areas as treatment progressed. He then called the nurse back in and told her he wanted me to begin treatment the next morning. She set me up for my first Chemotherapy treatment at 8:30AM the next morning. Then she took me to see the therapy room. It looked like the lobby of the finest hotel you can imagine. A sea of leather recliners, two or three television sets (one big screen), a virtual buffet of snacks laid out and a boomerang shaped control center where the nurses could monitor each patient and prepare the treatments. I was obviously impressed. That night after work I went home and, with very little apprehension, packed a small bag with some books for my first Chemotherapy session. I even put my slippers in the bag as they had told me my first session could last five hours. It was probably 70% the people and 30% the facility, but there was less fear than excitement about getting my treatment started. I didn’t want to be sick but I was more than ready to start getting well.
Just when you start to gain confidence in your HMO;
I showed up Tuesday morning at 8:20AM and entered the waiting room. I signed in and sat waiting with the others to be called in. Within minutes the same nice nurse from yesterday came out and asked me to come in to the back. I figured this was great service getting a new patient in first and followed her. Once in the back she closed the door and said “I’m really sorry Mr. Sipila. I thought your insurance company would call you last night. Apparently there was an error with the referral and you need to go to the XYZ center.” I couldn’t believe my ears. I was in the perfect facility for treatment of my condition and was being told I couldn’t be there because of some people in an office somewhere that are only interested in numbers. If I have ever been “livid” this would be it. I can usually cover disappointment pretty well, and this problem was not the fault of the nurse, but I’m pretty sure she was aware of how much this deflated me. I walked back to the car and decided “screw it, I’m going to work.”
The people at work were happy to see me but concerned as well as they knew I was supposed to be getting my first Chemotherapy. I stayed for an hour or so and decided putting this off further would do no good. I told my coworkers what happened and headed home to fight the insurance company. After calls to the referring doctor and to member services at my medical group it became clear that you never get to really talk to the insurance company. They just write checks (thank God) and don’t really care what else is going on. My second call to the referring doctor finally explained what had happened. My original referral had been approved by the insurance company but the doctors at XYZ center had overruled the approval because the center was not part of my medical group. I spent several hours alternating between being angry and feeling sorry for myself, then let it go and called XYZ center for an appointment. The lady who answered my call seemed to be expecting me. The appointment was set for 8:30AM Wednesday.
The first cancer center I had visited reminded me of a country club. The XYZ center reminded me of an aged strip mall. I parked in front of suite C and couldn’t help but notice the 70’s style architecture of the entire complex. It was definitely a medical complex. There were no chicken places or 7-11s but neither would have seemed out of place. I arrived 15 minutes early and worked on my attitude as I knew time was of the essence. I needed to get treatment started so there was no anger or resistance in me when I entered the waiting room at 8:30.
Within minutes a very nice nurse came and escorted me to the exam room to, once again, take my vitals. My blood pressure was a little higher than I had seen in awhile, but I didn’t comment on the possible cause. Before she left, the nurse said they like to take a picture of all the new patients, would I mind? After taking the picture she said the doctor would be in to see me soon and closed the door behind her.
Looking around the exam room I still struggled with my attitude a bit. The facilities were certainly acceptable and the people were just as nice as at the original center. There was a crooked picture on the wall of a windmill, but I think the thing that troubled me most was that the calendar on the wall was a free one from a drug company. What bothered me most was that it was dated 2001. Finally the doctor came in and I could shift my attention to the matters at hand.
My new doctor was one of the original founders of the center. He acknowledged I had already had an initial consultation with the doctor at the “country club” and didn’t really know what to tell me. Making no reference to the fact I knew he was the one who got me kicked out of the country club, I suggested he start at the beginning and we go through it again. He did and it was nearly word for word what the other doctor had already told me. He also scheduled me for a bone scan and a brain scan. This actually increased my confidence and I asked him how long it would be before we could start therapy. “Do you have time now” he asked? Within minutes a nurse escorted me to the therapy room as the doctor scrambled to get copies of blood tests done at the country club. The therapy room was not the high tech ideal seen at the other facility, but the first IV was installed and dripping before I had much time to think about.
Chemotherapy;
Chemotherapy was a horrible treatment not that many years ago. It was only done in the hospital because of the terrible nausea most suffered during treatment. Not that many years ago a new anti-nausea drug was invented and it has changed the way people respond to the therapy. The first medication administered during a chemotherapy session is that drug. According to the nurses in the therapy room, this was the biggest thing to happen to chemotherapy ever.
With the exception of the anti-nausea drug, each Chemotherapy treatment is tailored to the individual based on blood tests and a number of other factors. When the doctor learned I had Tininess (ringing in the ears) he eliminated a particular medication that he said would cause the ringing to increase. My anti-nausea bag was just about empty when the nurse came back to install a a new one. “The doctor got the blood tests and we’re good to go for a full session” she said with a big smile. I smiled back knowing that after all the hoops I had to jump through, we were finally on our way to recovery. Maybe it was fate, I thought, that I should receive treatment here. I was comfortable and felt as though those involved in the treatment were as capable as any available anywhere.
My chemotherapy regimen consisted of three days of therapy and three weeks off. Then three more days of therapy, three weeks off, etc. A “course” consists of the three days of therapy and the three weeks off and I was scheduled for at least four of these “courses.” They would then look at the progress of the cancer and schedule further treatment as needed.
The nurses asked me if they could leave the IV in for my first three days of therapy so they wouldn’t have to find a new vein each day. I was fine with that and the first day they taped and wrapped it so it was pretty flat and not that troublesome. The second day after the therapy a different nurse secured it and it ended up about the size of a lemon on my wrist. This was troublesome as it caught on everything and made it almost impossible to sleep. In the middle of the night I woke up and my cat was actually batting at it as if it was a toy I had put there for her. There was little sleep that night but the next day after my therapy the IV came out and I was free again.
The nurses prescribed a drug for nausea and warned me that it would not be unusual for me to feel at least a bit queazy over the two days after my therapy. I had no such feelings. I was able to work before and after each of my therapy sessions and stay caught up. I would also lose my appetite they warned. This didn’t happen either and I would expect the weight loss assumed will not happen. This was just my first session of Chemotherapy and I may face these problems later, but for now the experience has been easy and I am not afraid of what is to come.
Back to work; God Winks again;
During the therapy I had been looking forward to the three weeks off so I could get back to work full time and back to normal. The office manager was on vacation so my attendance the next week was important. Monday Morning I went to work as though nothing was different and there was nothing medical to do for the first time in what seemed like a long time. All went well for the first half of the day and I was really feeling like my old self again. Shortly after noon the General Manager called me in to his office and asked me to close the door. “We have a little snag” he started. “It seems Aetna Insurance won’t be extending Lee-Mar’s contract and we are going to have to change insurance carriers. The change will happen at the end of the month and the choices will be Kaiser and the Kaiser PPO. We’re checking now to see if this will affect where your Chemotherapy sessions can be done.” (Seems the company no longer had enough subscribers to qualify for the group plan we had been on.) To describe the feeling I had upon hearing this news is beyond me. Change is not a good thing in situations like this. Yet all I could do is smile and shake my head. I had approval for 130 medical procedures over the next several months from Aetna and now that was all going away and we would once again start from square one at the end of the month. The General Manager had a contact name with the new insurance company for me so I contacted her. I gave her the information about my Oncologist’s office and she said she would see if I could continue my treatments there under the new insurance. I had not heard back from her by the end of the day Tuesday so I started to doubt good news was on the way.
Wednesday morning I asked the general manager if he thought I should call the insurance lady again to get the status of my treatment coverage. He said he needed to contact her anyway and would check on it for me. A half hour later he was standing in front of my desk. I was on the phone with a customer but he waited until I was done. “The therapy center accepts the new insurance so you should be able to continue your therapy uninterrupted,” he said. Hearing those words lifted a weight I can’t even describe from my shoulders. “Can I do anything else for you” the GM asked. “Yeah, get the insurance ladies address so I send her flowers,” I replied.
Bone Scan;
As mentioned, one of the tests that had been scheduled for me was a full body bone scan. I had a really sore right foot that was making it a challenge to walk normally so I was almost looking forward to it. The cancer doctors I had been working with weren’t that interested in a sore foot.
When you have a bone scan it involves two appointments in the same day. First you go in to have them inject a radioactive substance. This would give me some great Spiderman material for work, I thought. Then a few hours later you go back for the actual scan. I went in for the injection around noon and, after receiving it, was told to drink lots of water and be back at 3:00PM for the scan. At 3:00 I was back for the scan as instructed.
A bone scan is done in a machine very much like the giant donut they use for a CT Scan. You lay on a terribly uncomfortable table and they move you back and forth through the device until they are happy with the images. As I tried to get comfortable on the table the technician ran a couple tests to make sure we were ready for the full scan. “Do you have discomfort in your right foot” he asked. “Yes” I practically yelled. “What’s wrong with it?” Being a technician he really had no idea and thought it might be a bunion. I knew that wasn’t it but I decided to wait and use this test result as ammunition to get the doctors to pay attention to my foot at the next appointment.
The MRI;
Another test they wanted to do was a brain scan or MRI. The test was to be done at the hospital the next Sunday afternoon. I had no idea hospitals were even open for tests on Sundays. I showed up at admitting at 3:30 and was the only person there. While filling out the check in form a voice from the back called for me to come in. “We’ll, I guess we know who you are” she said. They did and had me processed in a just a few minutes. They then instructed me to go back outside, cross the driveway and enter another building for the test. When there I filled out another form and was expecting to be called into the back for the test. Instead, a nurse came out and said follow me. I did and she lead me outside again and down a driveway toward the back of the building. Halfway there we met a gentleman in a lab coat who lead me to a semi trailer in the parking lot directly behind the hospital. When there he asked me to step on to a lift gate and pushed a button that slowly raised us to floor level of the trailer. Inside, I was directed to the left to a room that housed the machine.
Apparently an MRI is so noisy they don’t house it in the hospital, thus the semi trailer. I was instructed to remove everything from my pockets and remove my shoes. While doing so I eyed the machine and began to feel just a little uneasy. Sitting on the table I noticed a device that looked a bit like a hockey mask that was built into the table. The technician walked in, handed me a pair of ears plugs and went on to explain the noise thing. I asked for a description of the test because I was a little (more than a little) nervous. He explained that you lay on the table, they slide the hockey mask over your head then the table moves you into the tunnel where you stay for 20 minutes minimum in the deafening noise. Should you move, they start over. My claustrophobia began to show it’s ugly head and the technician was obviously aware. “Do you think you can do this” he asked. “Sure, just give me a minute” I said taking a few deep breaths. The deep breaths were not helping and my courage was not increasing. Again the technician was aware and suggested doing the test at this time was probably not a good idea. Figuring he was a professional I agreed and reclaimed my shoes and the contents of my pockets. Once again on the lift gate I still felt nervous as well as a little guilty for not being able to go on with the test. Back on the ground the guilt soon turned to relief as I headed back to the car. I would talk to my doctor, I thought, about the new open MRI machines that are now available. There is an office that does them in the same strip mall his office is in, so I figured it shouldn’t be a problem.
Hair today, gone tomorrow;
I had been told about all the probable side affects of Chemo Therapy. You may feel nauseous, you may feel weak, you may lose your appetite, you may lose a lot of weight, etc. So far none of these were affecting me. Another thing they told me was you WILL lose your hair. It was two weeks after the end of my first three days of Chemo and my hair was intact and I thought I had beaten this side affect as well. One morning while shampooing that all came to an end. After rinsing, my hands were pretty full of hair that belonged on my head. This can’t be good I thought, but after drying my fairly long hair it still looked okay. Maybe it didn’t mean anything, I thought. It’s been hot, maybe I’m just shedding. The next morning there was even more hair coming out and a slight tug on a few hairs removed them very easily. I called my hairdresser.
I have been going to the same hairdresser for ten years or so. I think of her as a barber, but if you get more than ten bucks for a haircut I figure you deserve the title “hairdresser.” She survived cancer about five years ago and had gone through a lot more than I had experienced so far. I told her I needed to move my appointment up and she agreed. When I arrived, I asked her to come over to talk with me and told her about the chemo and the hair falling out thing. “Can you cut it real short and do it without shampooing first? I don’t want to fill your sink with hair.” She didn’t have a problem with any of it so we shampooed first and she then gave me the first short haircut I can remember since getting hair. She was very supportive about the situation and the short haircut didn’t look nearly as bad as I thought it might. It just might delay my hat wearing days by a week or two. I really hate wearing hats so that would be a big plus. We didn’t make another appointment as my hair obviously isn’t growing, but Linda did offer that if I needed it shaved off she was just a phone call away. That wasn’t part of the supportive thing.
The new insurance kicks in;
Two days after the insurance change I went to the lab as I did every Thursday morning to have blood drawn. I was armed with only with my application for the Kaiser PPO and an e-mail from the nice lady coordinating the change. This was an important test as I had an appointment with the Oncologist the next day and this test would determine if my blood count was satisfactory so I could begin my next course of Chemo the following Tuesday.
I could tell this wasn’t going to go smoothly the minute I handed the application and e-mail to the young man assigned to draw my blood. Hand them a plastic insurance card and they’re on you like a famished Vampire. Hand them anything out of the ordinary and the normally efficient operations in the lab come to a screeching halt. Add the words “Kaiser Permanente” to the top of the application and the “Vampires” recoil as though you just handed them a cross. After a long conversation explaining that this was actually a PPO associated with Kaiser they drew the three vials of blood required for the tests and I was on my way, but not without a final warning that if the office had any problem with my paperwork they would give me a call.
About an hour and a half after I got to work the receptionist interrupted a call I was on with a note that said “lab on line 2.” I hate when personal stuff interferes with business, but this was an exception so I asked the store I was talking with if I could call them back in five minutes. They had no problem with it so I picked up the call from the lab. “We have a problem with your new insurance” said the lady from the lab. I went through the same explanation I had with the lab workers but wasn’t getting anywhere so I told her I would have a representative of the PPO give her a call. “I’ll ask them not to dispose of the samples until we hear from her” she said. This gave me chills. “Don’t dispose of the samples at all” I urged, calmly I think. “This test HAS to be done. I’ll pay for it myself if there is a problem with the insurance.” She assured me she would hold the samples.
I called the lady coordinating the change over and she assured me she would straighten things out with the lab. A half hour later she called to tell me she had the leave a “long winded” message on there machine but would continue to try to contact them in person. Apparently her message worked as the lab called an hour later to say everything was okay with the insurance. “We all just kind of freaked when we saw Kaiser, but it’s fine now. Sorry if we scared you” she said. “That’s all right,” I replied, “they don’t take my blood pressure again until tomorrow morning.”
The next morning I arrived early for my doctor’s appointment with a secret weapon. Not only did I have the copy of the application and the e-mail, but I had printed the page on the PPO web site showing that my Oncologist did indeed accept the new insurance. This made things a lot easier. I was in the examination room right on schedule. The doctor had the blood tests from the previous day and my blood count was fine so I was cleared to start my second round of chemo the next Tuesday. He also went over the bone scans siting broken ribs that may have occurred when a heart operation was done as a child and an apparent “slipped disc” in my lower back that he really thought should be causing me pain. He even pounded lightly asking if it hurt. He seemed a little baffled that it didn’t. I also explained the missing MRI results by telling him my embarrassing story. He understood and said he would schedule another CT scan of my head as it was more open. “I think I’ll have them scan your lower back again, too” he said sounding just a little obsessed. Since he seemed so interested in healed bones and other anomalies, I asked him again about my sore right foot. “Could be arthritis” he offered. “Sure doesn’t feel like arthritis” I said. “Hey, I’m just a cancer doctor” he replied, apparently a little offended. I couldn’t help but think he was just irritated that my back didn’t hurt and my foot did. At any rate, that was the end of our non cancer related conversations. Good progress was noted by the doctor so we were both encouraged. I stopped at the receptionists desk on the way out to check of their progress with the new insurance. There would be no problem and they would call me later in the day with the details and changes. It was my day off so I asked them to call me at home.
Friday I had three calls at home within an hour. Each time the phone only rang once and when I answered it there was a modem like tone. I got my cell phone and called my number. Same result for the caller. One ring and a modem tone. My roommate Jerry was at his place in Mexico and had left his two lap tops in his room. Since his computers are the only two that use a modem for internet connection I checked them. One of them was running with nothing on the screen and had the phone cord plugged in. It was not connected to the internet but apparently had decided to answer the phone when it rang. I shut down the computer, unplugged the phone line and tested the phone again. It worked fine.
The price of health increases;
I called the doctor’s office. They had, indeed, tried to call a few times with no success. “The insurance has been approved. Your new co-pay is $25.00 for each procedure” she continued. This was $25.00 for doctor visits, chemo sessions and even for the 10 minute injection appointments the day after my chemo sessions. With Aetna the co-pay was $10.00 for doctor appointments and nothing for the rest. Today was the first day of my second course of chemo. I wrote them a check for $100.00 to cover the week. The cost is higher, but I didn’t complain a bit. Can you imagine what the medical procedures I will be having over the next few months would be with no insurance? I can.
Chemo Therapy, Second Course;
I had made a small mistake during my recent appointment with the Oncologist. When asked how I had handled the first course of chemo I told him how well is had gone. No nausea, good appetite, able to work, etc. As a result of my innocent comments he decided to increase my dosage for round two. I noticed an immediate lowering of my energy level but still no nausea and I was able to work through the three days of treatments with no problem. The other side affect that increased was not being able to sleep at night during the three days of treatments. But all in all, my second course was easy. I’ll just temper my comments a bit at my next appointment with the Oncologist prior to course three so he doesn’t crank it up too many notches. Having spent a number of hours now in the treatment rooms and seeing how those less able to tolerate the treatments suffer I feel very lucky that, for whatever reason, I can function normally during them. I feel better than I did before treatment started and am well on the road to recovery.
About two months ago I went out to my little desert place in Borrego Springs to do some work I had been putting off. The “cute little” Kangaroo Rats the desert is known for were digging onto my screen porch through a 3” wide strip of dirt between the slab and the skirting. Every trip out I would find rather impressive piles of dirt that I literally had to shovel into a bucket and carry outside. I was tired of the constant cleanup so I decided to dig out the 3” strip of dirt the full length of the screen porch and fill it with concrete. Knowing there would be a lot of concrete dust as well as rodent dust, I borrowed a breathing mask from our manufacturing department at work.
When I got to the desert I drove right by my place and on to the hardware store to buy the concrete. (I have a tendency to let jobs go if I stop at the house first to relax.) With six bags of concrete in the back I headed back up the hill to my place. After opening the place up and turning everything on I started on the job. The first step was to remove the always present piles of dirt on the slab and dig the trench. I got the bucket and shovel and headed to the car to get the mask. About half way there I realized I had left it on my desk at work. I went to the car and looked anyway, but I was, indeed, maskless. Now, the hardware store can’t be more than three miles from my place and I’m sure they have masks for a few bucks but between my place and the hardware store is a little bar and grill called Karlee’s that has delayed more than one work project in the past so I decided to just get started.
It was a hot day in the desert (a little redundant I guess) so as I dug the trench and mixed concrete I took frequent breaks when I’d worked up a sweat to go inside and cool off in front of the swamp cooler blowing on high. Toward the end of the job, between the dust I was breathing and the day long hot to cold to hot transitions, my lungs were feeling a little tight. The next morning they felt as though the concrete may have set in them during the night. Needless to say I wasn’t feeling well and was just a little mad at myself for being more than a little dumb. Thank God I was able to get over these negative feeling and down to Karlee’s for lunch and a couple beers. I hate totally wasting a beautiful day in the desert!
By the time I left for work on Monday the chest pain and cough had changed to what felt like any normal bad cold. This lasted a week or so then it changed to feeling more like the flu. Another week or so it was better. Then bad again. During this time there were reports on the San Diego news about the “deadly” Hanta Virus being found in the County. One of the rodents tested positive for carrying the virus was the Kangaroo Rat of East County. This gave me a couple days of interesting thoughts, but the symptoms were all wrong so I let that go.
Finally it became obvious this wasn’t going away on it’s own so I decided to bite the bullet and go to the doctor. My medical group has a weekend clinic and I didn’t want to miss work so I went there Sunday expecting hours of waiting. I was the only patient there and my regular doctor was on duty. Some form of fate I suppose. After going over the symptoms and listening to me wheeze a few times, and since I was the only patient among a dozen or so bored medical professionals, they immediately took me for a chest X-Ray. I waited as they processed it. The doctor returned and told me it was Pneumonia and prescribed an antibiotic. He then said that there was also an annoying little spot they were going to need to check more closely. He was going to refer me for a CT Scan. I’m on an HMO so I decided I wouldn’t hold my breath (even if I could) waiting for the referral.
The referral was in my mailbox Tuesday when I got home from work. I was very impressed, until I opened it. I had been referred to Children’s Hospital in San Diego for the CT Scan. It was too late to call but the next day I called the appointment number at Children’s just to see what the deal was. The appointment nurse got quite a kick out of it. Next I called my medical group to report the error. Turned out the place I was supposed to have been referred was in the same building as my regular doctor. I was given an appointment for Thursday.
The CT Scan is a pretty mundane test. You lay on your back, hold your breath a few times and they run you through this big donut shaped machine. The surprise for me came at what I thought was the end of the test. As they slid me out of the donut the nurse came in and said that she would now put in my IV so they could inject the iodine. I knew she wasn’t joking because she was standing right next to me with it in her hand. So with the IV installed they slid me back in the donut. When they inject the iodine you get an instant flush feeling all over and a metallic taste in your mouth. Not horribly unpleasant but not mundane either.
When I got home from work that night there was another referral in my mail. It was to an Oncologist to go over the results of the CT Scan. Their office called me the next day before I had a chance to call them. They had already made an appointment for me for Monday. I’ve never been real big on following doctor’s orders but the speed of this unHMO type service lead me to believe this was important enough to change that pattern. Monday I picked up my scan as they had instructed and went to the appointment.
When the Oncologist came in I think I already had in the back of my mind the thought that this wasn’t going to be good news. He calmly explained to me that there was definitely something there. It could be a benign tumor, a malignant tumor or, just possibly, a virus of some kind. (Hanta Virus, let it be Hanta Virus my mind thought until it remembered the “deadly” part of that disease.) One more test was required to finally tell once and for all what it was. A Bronchoscopy. The news was bad but the tests were getting worse. The Oncologist explained that this test involves a long flexible tube with a camera and a tiny tool on the end of it. They put this down your throat and into your lungs to first look at the tumor and then take a biopsy. The most troubling thing to me was they use “moderate” anesthesia. I gag when I brush my teeth so this test was not good news for me at all. The good news was there would be little time to dwell on it. The doctor “assumed” the insurance would approve the test and they had me scheduled for 6:30AM the next day before I left their office and went back to work.
You can’t drive yourself home from a Bronchoscopy so my buddy Jerry (who is not a morning person) agreed to drive me to the hospital. I rent him my guest room during the summer so at least he was here so I could wake him up. We got to the hospital on time and I was in a bed with my backless gown on by 7:00AM. There was a TV in the room so I turned on the morning news and laid back to watch and wait. Before long a nurse came in to take my vitals and to have me sign the obligatory paperwork. Soon a second nurse came to hook up an IV and give me a shot to relax me. (I was practically asleep already.) At exactly the right time the morning news had a story about Horrible Hospital Mistakes. The nurse with her back to the television turned to look and as they showed some stock footage of a hospital scene I said “hey isn’t that you?” She thought it was pretty funny but the other nurse didn’t seem to get the humor. The happy nurse explained it was a joke and she was fine. A half hour later they wheeled me through the halls to the room where the test would be done. The vitals nurse was gone now and we had a new nurse for an assistant. As they hooked me to heart monitors and all kinds of tubes the original nurse started to explain the operation again. I asked her about the “moderate” anesthesia. She said I would know what was going on but it wouldn’t bother me. She showed me the 3/4 full syringe and said she would only need about half of it. I suggested that my knowing what was going on would bother me and offered her five bucks to use it all. She chuckled and said okay. Even though I knew she didn’t mean it it made me feel better. The doctor walked in the room, said hi and the next thing I remember is waking up in the recovery room.
One thing recovery room nurses have in common is they will not give you water no matter how thirsty you claim to be. Part of the preparation for this test was nothing to eat or drink after midnight. After the test I fully expected at least a glass of water. This recovery room nurse was very nice but explained that I was not allowed to have anything until I had been awake for 1 1/2 hours. Protesting would do no good so I just laid back down and watched the nurses waking up the other patients just coming out of anesthesia. It was actually pretty entertaining. Exactly 1 1/2 hours after I woke up the recovery room nurse walked toward me with a tray. She explained that as soon as I could drink something and not get sick she would call my ride. (I resisted the temptation to tell her I could have done that an hour and a half earlier.) Then she handed me the tiniest little peel open cup of apple juice I’ve ever seen and a tiny straw to match. The juice was gone before she could turn to leave. “Would you like another one” she asked. “Would you bring two and a regular size glass of water please” I replied. On her way back she asked if I would like a muffin. I nodded and soon had a normal size blueberry muffin. When the two little “apple shots” and blueberry muffin were gone the nurse came back over and asked if I felt okay. “Better now, thanks” I said. I guess it was obvious I wasn’t going to get sick. She removed my IV, gave me back my clothes and called Jerry.
Two days later I sat in the Oncologist’s office again waiting for the final results. I expected to get the results from a different doctor as mine was scheduled to leave on vacation the previous day so I was surprised when my regular doctor walked into the room. “Hey, I thought you were on vacation” I said. “I put it off a day” he replied. “I wanted to talk to you.” He went on to review the three possibilities we had discussed before and then said that of all the bad news, this was the best we could have hoped for. Seems my lung cancer is the small cell variety. Less common and by far the most receptive to treatment by Chemotherapy. He reviewed the pros and cons (mostly cons) of Chemotherapy but by this time I wasn’t really hearing much of what he was saying. Instead I was having a feeling that must be similar to what people feel who have won the lottery. Whatever Chemotherapy had to offer I would gladly accept for a chance to get out of this thing in one piece.
Again, my referral to the cancer center that would do my Chemotherapy came within two days. The center is located about three miles from my house and two miles from my work. Absolutely perfect, I thought. They once again had scheduled my appointment for me and once again I accepted their timing without question or complaint. It was on a Monday morning. When I arrived I was very impressed with the facility. A very large free standing building, open and airy with a feeling unlike most medical facilities. I signed in and was called to come in within minutes. A very nice nurse took me to the exam room and took my vitals for the third time in a week. (I felt like I should just have them printed on a card so I could present them each time I went in and save time.) Soon the Oncologist with whom I would deal during treatment came in and went over the procedures and, again, the pros and cons of Chemotherapy. He also said he was scheduling me for a bone scan just to see if the cancer had spread. It would not change the treatment he explained, but if it had spread they would want to keep an eye on those areas as treatment progressed. He then called the nurse back in and told her he wanted me to begin treatment the next morning. She set me up for my first Chemotherapy treatment at 8:30AM the next morning. Then she took me to see the therapy room. It looked like the lobby of the finest hotel you can imagine. A sea of leather recliners, two or three television sets (one big screen), a virtual buffet of snacks laid out and a boomerang shaped control center where the nurses could monitor each patient and prepare the treatments. I was obviously impressed. That night after work I went home and, with very little apprehension, packed a small bag with some books for my first Chemotherapy session. I even put my slippers in the bag as they had told me my first session could last five hours. It was probably 70% the people and 30% the facility, but there was less fear than excitement about getting my treatment started. I didn’t want to be sick but I was more than ready to start getting well.
Just when you start to gain confidence in your HMO;
I showed up Tuesday morning at 8:20AM and entered the waiting room. I signed in and sat waiting with the others to be called in. Within minutes the same nice nurse from yesterday came out and asked me to come in to the back. I figured this was great service getting a new patient in first and followed her. Once in the back she closed the door and said “I’m really sorry Mr. Sipila. I thought your insurance company would call you last night. Apparently there was an error with the referral and you need to go to the XYZ center.” I couldn’t believe my ears. I was in the perfect facility for treatment of my condition and was being told I couldn’t be there because of some people in an office somewhere that are only interested in numbers. If I have ever been “livid” this would be it. I can usually cover disappointment pretty well, and this problem was not the fault of the nurse, but I’m pretty sure she was aware of how much this deflated me. I walked back to the car and decided “screw it, I’m going to work.”
The people at work were happy to see me but concerned as well as they knew I was supposed to be getting my first Chemotherapy. I stayed for an hour or so and decided putting this off further would do no good. I told my coworkers what happened and headed home to fight the insurance company. After calls to the referring doctor and to member services at my medical group it became clear that you never get to really talk to the insurance company. They just write checks (thank God) and don’t really care what else is going on. My second call to the referring doctor finally explained what had happened. My original referral had been approved by the insurance company but the doctors at XYZ center had overruled the approval because the center was not part of my medical group. I spent several hours alternating between being angry and feeling sorry for myself, then let it go and called XYZ center for an appointment. The lady who answered my call seemed to be expecting me. The appointment was set for 8:30AM Wednesday.
The first cancer center I had visited reminded me of a country club. The XYZ center reminded me of an aged strip mall. I parked in front of suite C and couldn’t help but notice the 70’s style architecture of the entire complex. It was definitely a medical complex. There were no chicken places or 7-11s but neither would have seemed out of place. I arrived 15 minutes early and worked on my attitude as I knew time was of the essence. I needed to get treatment started so there was no anger or resistance in me when I entered the waiting room at 8:30.
Within minutes a very nice nurse came and escorted me to the exam room to, once again, take my vitals. My blood pressure was a little higher than I had seen in awhile, but I didn’t comment on the possible cause. Before she left, the nurse said they like to take a picture of all the new patients, would I mind? After taking the picture she said the doctor would be in to see me soon and closed the door behind her.
Looking around the exam room I still struggled with my attitude a bit. The facilities were certainly acceptable and the people were just as nice as at the original center. There was a crooked picture on the wall of a windmill, but I think the thing that troubled me most was that the calendar on the wall was a free one from a drug company. What bothered me most was that it was dated 2001. Finally the doctor came in and I could shift my attention to the matters at hand.
My new doctor was one of the original founders of the center. He acknowledged I had already had an initial consultation with the doctor at the “country club” and didn’t really know what to tell me. Making no reference to the fact I knew he was the one who got me kicked out of the country club, I suggested he start at the beginning and we go through it again. He did and it was nearly word for word what the other doctor had already told me. He also scheduled me for a bone scan and a brain scan. This actually increased my confidence and I asked him how long it would be before we could start therapy. “Do you have time now” he asked? Within minutes a nurse escorted me to the therapy room as the doctor scrambled to get copies of blood tests done at the country club. The therapy room was not the high tech ideal seen at the other facility, but the first IV was installed and dripping before I had much time to think about.
Chemotherapy;
Chemotherapy was a horrible treatment not that many years ago. It was only done in the hospital because of the terrible nausea most suffered during treatment. Not that many years ago a new anti-nausea drug was invented and it has changed the way people respond to the therapy. The first medication administered during a chemotherapy session is that drug. According to the nurses in the therapy room, this was the biggest thing to happen to chemotherapy ever.
With the exception of the anti-nausea drug, each Chemotherapy treatment is tailored to the individual based on blood tests and a number of other factors. When the doctor learned I had Tininess (ringing in the ears) he eliminated a particular medication that he said would cause the ringing to increase. My anti-nausea bag was just about empty when the nurse came back to install a a new one. “The doctor got the blood tests and we’re good to go for a full session” she said with a big smile. I smiled back knowing that after all the hoops I had to jump through, we were finally on our way to recovery. Maybe it was fate, I thought, that I should receive treatment here. I was comfortable and felt as though those involved in the treatment were as capable as any available anywhere.
My chemotherapy regimen consisted of three days of therapy and three weeks off. Then three more days of therapy, three weeks off, etc. A “course” consists of the three days of therapy and the three weeks off and I was scheduled for at least four of these “courses.” They would then look at the progress of the cancer and schedule further treatment as needed.
The nurses asked me if they could leave the IV in for my first three days of therapy so they wouldn’t have to find a new vein each day. I was fine with that and the first day they taped and wrapped it so it was pretty flat and not that troublesome. The second day after the therapy a different nurse secured it and it ended up about the size of a lemon on my wrist. This was troublesome as it caught on everything and made it almost impossible to sleep. In the middle of the night I woke up and my cat was actually batting at it as if it was a toy I had put there for her. There was little sleep that night but the next day after my therapy the IV came out and I was free again.
The nurses prescribed a drug for nausea and warned me that it would not be unusual for me to feel at least a bit queazy over the two days after my therapy. I had no such feelings. I was able to work before and after each of my therapy sessions and stay caught up. I would also lose my appetite they warned. This didn’t happen either and I would expect the weight loss assumed will not happen. This was just my first session of Chemotherapy and I may face these problems later, but for now the experience has been easy and I am not afraid of what is to come.
Back to work; God Winks again;
During the therapy I had been looking forward to the three weeks off so I could get back to work full time and back to normal. The office manager was on vacation so my attendance the next week was important. Monday Morning I went to work as though nothing was different and there was nothing medical to do for the first time in what seemed like a long time. All went well for the first half of the day and I was really feeling like my old self again. Shortly after noon the General Manager called me in to his office and asked me to close the door. “We have a little snag” he started. “It seems Aetna Insurance won’t be extending Lee-Mar’s contract and we are going to have to change insurance carriers. The change will happen at the end of the month and the choices will be Kaiser and the Kaiser PPO. We’re checking now to see if this will affect where your Chemotherapy sessions can be done.” (Seems the company no longer had enough subscribers to qualify for the group plan we had been on.) To describe the feeling I had upon hearing this news is beyond me. Change is not a good thing in situations like this. Yet all I could do is smile and shake my head. I had approval for 130 medical procedures over the next several months from Aetna and now that was all going away and we would once again start from square one at the end of the month. The General Manager had a contact name with the new insurance company for me so I contacted her. I gave her the information about my Oncologist’s office and she said she would see if I could continue my treatments there under the new insurance. I had not heard back from her by the end of the day Tuesday so I started to doubt good news was on the way.
Wednesday morning I asked the general manager if he thought I should call the insurance lady again to get the status of my treatment coverage. He said he needed to contact her anyway and would check on it for me. A half hour later he was standing in front of my desk. I was on the phone with a customer but he waited until I was done. “The therapy center accepts the new insurance so you should be able to continue your therapy uninterrupted,” he said. Hearing those words lifted a weight I can’t even describe from my shoulders. “Can I do anything else for you” the GM asked. “Yeah, get the insurance ladies address so I send her flowers,” I replied.
Bone Scan;
As mentioned, one of the tests that had been scheduled for me was a full body bone scan. I had a really sore right foot that was making it a challenge to walk normally so I was almost looking forward to it. The cancer doctors I had been working with weren’t that interested in a sore foot.
When you have a bone scan it involves two appointments in the same day. First you go in to have them inject a radioactive substance. This would give me some great Spiderman material for work, I thought. Then a few hours later you go back for the actual scan. I went in for the injection around noon and, after receiving it, was told to drink lots of water and be back at 3:00PM for the scan. At 3:00 I was back for the scan as instructed.
A bone scan is done in a machine very much like the giant donut they use for a CT Scan. You lay on a terribly uncomfortable table and they move you back and forth through the device until they are happy with the images. As I tried to get comfortable on the table the technician ran a couple tests to make sure we were ready for the full scan. “Do you have discomfort in your right foot” he asked. “Yes” I practically yelled. “What’s wrong with it?” Being a technician he really had no idea and thought it might be a bunion. I knew that wasn’t it but I decided to wait and use this test result as ammunition to get the doctors to pay attention to my foot at the next appointment.
The MRI;
Another test they wanted to do was a brain scan or MRI. The test was to be done at the hospital the next Sunday afternoon. I had no idea hospitals were even open for tests on Sundays. I showed up at admitting at 3:30 and was the only person there. While filling out the check in form a voice from the back called for me to come in. “We’ll, I guess we know who you are” she said. They did and had me processed in a just a few minutes. They then instructed me to go back outside, cross the driveway and enter another building for the test. When there I filled out another form and was expecting to be called into the back for the test. Instead, a nurse came out and said follow me. I did and she lead me outside again and down a driveway toward the back of the building. Halfway there we met a gentleman in a lab coat who lead me to a semi trailer in the parking lot directly behind the hospital. When there he asked me to step on to a lift gate and pushed a button that slowly raised us to floor level of the trailer. Inside, I was directed to the left to a room that housed the machine.
Apparently an MRI is so noisy they don’t house it in the hospital, thus the semi trailer. I was instructed to remove everything from my pockets and remove my shoes. While doing so I eyed the machine and began to feel just a little uneasy. Sitting on the table I noticed a device that looked a bit like a hockey mask that was built into the table. The technician walked in, handed me a pair of ears plugs and went on to explain the noise thing. I asked for a description of the test because I was a little (more than a little) nervous. He explained that you lay on the table, they slide the hockey mask over your head then the table moves you into the tunnel where you stay for 20 minutes minimum in the deafening noise. Should you move, they start over. My claustrophobia began to show it’s ugly head and the technician was obviously aware. “Do you think you can do this” he asked. “Sure, just give me a minute” I said taking a few deep breaths. The deep breaths were not helping and my courage was not increasing. Again the technician was aware and suggested doing the test at this time was probably not a good idea. Figuring he was a professional I agreed and reclaimed my shoes and the contents of my pockets. Once again on the lift gate I still felt nervous as well as a little guilty for not being able to go on with the test. Back on the ground the guilt soon turned to relief as I headed back to the car. I would talk to my doctor, I thought, about the new open MRI machines that are now available. There is an office that does them in the same strip mall his office is in, so I figured it shouldn’t be a problem.
Hair today, gone tomorrow;
I had been told about all the probable side affects of Chemo Therapy. You may feel nauseous, you may feel weak, you may lose your appetite, you may lose a lot of weight, etc. So far none of these were affecting me. Another thing they told me was you WILL lose your hair. It was two weeks after the end of my first three days of Chemo and my hair was intact and I thought I had beaten this side affect as well. One morning while shampooing that all came to an end. After rinsing, my hands were pretty full of hair that belonged on my head. This can’t be good I thought, but after drying my fairly long hair it still looked okay. Maybe it didn’t mean anything, I thought. It’s been hot, maybe I’m just shedding. The next morning there was even more hair coming out and a slight tug on a few hairs removed them very easily. I called my hairdresser.
I have been going to the same hairdresser for ten years or so. I think of her as a barber, but if you get more than ten bucks for a haircut I figure you deserve the title “hairdresser.” She survived cancer about five years ago and had gone through a lot more than I had experienced so far. I told her I needed to move my appointment up and she agreed. When I arrived, I asked her to come over to talk with me and told her about the chemo and the hair falling out thing. “Can you cut it real short and do it without shampooing first? I don’t want to fill your sink with hair.” She didn’t have a problem with any of it so we shampooed first and she then gave me the first short haircut I can remember since getting hair. She was very supportive about the situation and the short haircut didn’t look nearly as bad as I thought it might. It just might delay my hat wearing days by a week or two. I really hate wearing hats so that would be a big plus. We didn’t make another appointment as my hair obviously isn’t growing, but Linda did offer that if I needed it shaved off she was just a phone call away. That wasn’t part of the supportive thing.
The new insurance kicks in;
Two days after the insurance change I went to the lab as I did every Thursday morning to have blood drawn. I was armed with only with my application for the Kaiser PPO and an e-mail from the nice lady coordinating the change. This was an important test as I had an appointment with the Oncologist the next day and this test would determine if my blood count was satisfactory so I could begin my next course of Chemo the following Tuesday.
I could tell this wasn’t going to go smoothly the minute I handed the application and e-mail to the young man assigned to draw my blood. Hand them a plastic insurance card and they’re on you like a famished Vampire. Hand them anything out of the ordinary and the normally efficient operations in the lab come to a screeching halt. Add the words “Kaiser Permanente” to the top of the application and the “Vampires” recoil as though you just handed them a cross. After a long conversation explaining that this was actually a PPO associated with Kaiser they drew the three vials of blood required for the tests and I was on my way, but not without a final warning that if the office had any problem with my paperwork they would give me a call.
About an hour and a half after I got to work the receptionist interrupted a call I was on with a note that said “lab on line 2.” I hate when personal stuff interferes with business, but this was an exception so I asked the store I was talking with if I could call them back in five minutes. They had no problem with it so I picked up the call from the lab. “We have a problem with your new insurance” said the lady from the lab. I went through the same explanation I had with the lab workers but wasn’t getting anywhere so I told her I would have a representative of the PPO give her a call. “I’ll ask them not to dispose of the samples until we hear from her” she said. This gave me chills. “Don’t dispose of the samples at all” I urged, calmly I think. “This test HAS to be done. I’ll pay for it myself if there is a problem with the insurance.” She assured me she would hold the samples.
I called the lady coordinating the change over and she assured me she would straighten things out with the lab. A half hour later she called to tell me she had the leave a “long winded” message on there machine but would continue to try to contact them in person. Apparently her message worked as the lab called an hour later to say everything was okay with the insurance. “We all just kind of freaked when we saw Kaiser, but it’s fine now. Sorry if we scared you” she said. “That’s all right,” I replied, “they don’t take my blood pressure again until tomorrow morning.”
The next morning I arrived early for my doctor’s appointment with a secret weapon. Not only did I have the copy of the application and the e-mail, but I had printed the page on the PPO web site showing that my Oncologist did indeed accept the new insurance. This made things a lot easier. I was in the examination room right on schedule. The doctor had the blood tests from the previous day and my blood count was fine so I was cleared to start my second round of chemo the next Tuesday. He also went over the bone scans siting broken ribs that may have occurred when a heart operation was done as a child and an apparent “slipped disc” in my lower back that he really thought should be causing me pain. He even pounded lightly asking if it hurt. He seemed a little baffled that it didn’t. I also explained the missing MRI results by telling him my embarrassing story. He understood and said he would schedule another CT scan of my head as it was more open. “I think I’ll have them scan your lower back again, too” he said sounding just a little obsessed. Since he seemed so interested in healed bones and other anomalies, I asked him again about my sore right foot. “Could be arthritis” he offered. “Sure doesn’t feel like arthritis” I said. “Hey, I’m just a cancer doctor” he replied, apparently a little offended. I couldn’t help but think he was just irritated that my back didn’t hurt and my foot did. At any rate, that was the end of our non cancer related conversations. Good progress was noted by the doctor so we were both encouraged. I stopped at the receptionists desk on the way out to check of their progress with the new insurance. There would be no problem and they would call me later in the day with the details and changes. It was my day off so I asked them to call me at home.
Friday I had three calls at home within an hour. Each time the phone only rang once and when I answered it there was a modem like tone. I got my cell phone and called my number. Same result for the caller. One ring and a modem tone. My roommate Jerry was at his place in Mexico and had left his two lap tops in his room. Since his computers are the only two that use a modem for internet connection I checked them. One of them was running with nothing on the screen and had the phone cord plugged in. It was not connected to the internet but apparently had decided to answer the phone when it rang. I shut down the computer, unplugged the phone line and tested the phone again. It worked fine.
The price of health increases;
I called the doctor’s office. They had, indeed, tried to call a few times with no success. “The insurance has been approved. Your new co-pay is $25.00 for each procedure” she continued. This was $25.00 for doctor visits, chemo sessions and even for the 10 minute injection appointments the day after my chemo sessions. With Aetna the co-pay was $10.00 for doctor appointments and nothing for the rest. Today was the first day of my second course of chemo. I wrote them a check for $100.00 to cover the week. The cost is higher, but I didn’t complain a bit. Can you imagine what the medical procedures I will be having over the next few months would be with no insurance? I can.
Chemo Therapy, Second Course;
I had made a small mistake during my recent appointment with the Oncologist. When asked how I had handled the first course of chemo I told him how well is had gone. No nausea, good appetite, able to work, etc. As a result of my innocent comments he decided to increase my dosage for round two. I noticed an immediate lowering of my energy level but still no nausea and I was able to work through the three days of treatments with no problem. The other side affect that increased was not being able to sleep at night during the three days of treatments. But all in all, my second course was easy. I’ll just temper my comments a bit at my next appointment with the Oncologist prior to course three so he doesn’t crank it up too many notches. Having spent a number of hours now in the treatment rooms and seeing how those less able to tolerate the treatments suffer I feel very lucky that, for whatever reason, I can function normally during them. I feel better than I did before treatment started and am well on the road to recovery.
