Sunday, August 20, 2000
I had a dark night of the soul last night, thinking about what Plotkin's article said about women in their 40s who develop breast cancer. I had to keep reminding myself that he wrote that in 1996 before we had Taxol. Even that didn't help. I could not fight my fear with reason. It's been several months since I even entertained the notion that I could die from breast cancer. Last night, for a few minutes, I not only entertained the idea, I was convinced that Rick would be a widower before age 50. Then, a song that I used to sing came to me, "O rest in the Lord, wait patiently for him." It's based on Psalm 37, which contains this verse "The LORD knoweth the days of the upright: and their inheritance shall be forever." (v. 18) My days are truly in his hand, and I also prayed these verses from Isaiah 35: 3-4: "Strengthen ye the weak hands, and confirm the feeble knees. Say to them that are of a fearful heart, Be strong, fear not: behold, your God will come with vengeance, even God with a recompence; he will come and save you." I cannot tell you the peace that came over me instantly and I fell almost immediately into a deep sleep and did not wake up until morning. I got up this morning more determined than ever to beat this disease.The nystatin swish the doctor prescribed is helping. I had some fruit, a slice of pizza, and a small serving of sherbet last night while we watched Jerry Lewis/Dean Martin movie. The taste in my mouth is still bad, but not nearly as bad as it was Friday. I hope my breath has improved, but I doubt it. The cats seem overly interested in sniffing my mouth. I worked up the energy to shower and dress today, something I never did yesterday. I weighed myself and found that I've lost 4 pounds since Friday. I'm sure it's because I didn't drink much at all yesterday. I'm forcing water today, even though it tastes like something that came out of a swamp. The big problem today is cramping in my calves, hamstrings, and back, plus a steady, sharp pain in the area where I think my gall bladder lives. I took a muscle relaxant and am hoping it kicks in soon. Right now, I have to do some oral care and finish it up with the swish.
Cancer and Pain - a general overview of how pain should be handled.
posted by Karen Weber Sunday, August 20, 2000
Monday, August 21, 2000
The Nystatin is continuing to work, although it's too slow for my taste. Yesterday I had some pain in my abdomen, I thought it was gall bladder but my mother tells me it was in the wrong place. We wondered if it might be an ulcer. Some people get abdominal pain from the nystatin. I don't know what it was, but it's gone today. Yesterday I also had muscle cramps in my calves and hamstrings, plus some intermittent spasms in my right pec and traps. My massage therapist is coming today, and it can't be too soon! Today, I'm just tired, dizzy, and have pain in my low back and pelvis from the Neupogen, but as I told Rick last night after I finished my whining about all my aches and pains, my toes feel great!
posted by Karen Weber Monday, August 21, 2000
Tuesday, August 22, 2000
Well, proof that chemo kills brain cells: I have a vague feeling that my massage therapist may have said something about changing the day she was coming this week, but I cannot remember anything definite. She didn't show up yesterday, so I figure my vague feeling is based on reality. I just wish I could remember something about what she told me. To make it worse, it seems that chemo is also killing Rick's brain cells because he doesn't remember either. This chemo is some pretty strong stuff! My mom says she is losing her hair, and my cats seem to be sleeping all the time - oh, wait, that second one is normal. Well, anyway, I think it's fair to say that doing chemo has been hard on everyone involved. I sure am glad to be halfway done.Last evening, I started getting a really bad headache. I was hoping the bellergal I take for hot flashes would kill it, but it survived the night and got up with me this morning. I would say from the quantity of green/yellow snot I blew out of my nose this morning that it's a sinus headache. I have the OK to take sudafed and naprosyn, my sinus cocktail of choice, so I'm hoping that will kill it. My mouth is slowly, slowly getting better, but it still tastes quite a bit like a swamp in there and now with the postnasal drip going, my stomach is not very happy again. I took my 4th neupogen shot of this cycle last night, so theoretically I should be abounding in white blood cells out looking for infections to fight with. It just doesn't seem to be working that way.
On top of this, my employee (who is a college student) will be cutting back her hours next week. She has been such a big help to me this summer, picking up a lot of my work so that I would have time to rest and do soul nurturing things. I knew this was coming, but it is still causing me a bit of panic. Not having started the Taxol yet, I don't know what to expect and how I'm going to handle it. The good news is that she isn't cutting her hours back near as drastically as I feared she might. I really wish one of my cats would pick up a computer skill other than Barfing on Keyboards 101.
Well, I've had my little pity party now. Soon the sudafed and naprosyn should kick in and kill this headache. Then I'll be ready to do something other than lie here, rubbing my head and worrying. Soon, soon....
Have I had a morning! I have a stack of bills saying that I am past due on paying them. All of them were paid, on time, but still I have this stack of bills. So I started calling. First, car insurance. Yes, you paid it on time. Not sure why you are receiving past due notices. Just ignore them. Scary, but OK. Next, the hospital. Yes, you are all paid up. In fact, we owe you $179. Can't send it to you until next month. Just ignore the past due notices and we'll get that check out to you someday. Next the pathology lab. Not so easy. Two different phone numbers on the letter - one obviously a typo as the numbers are the same with one reversal. Neither version works. No other phone number on the letter. I call directory assistance and get a third number that is no where close to either of the first two. Finally get the lab. Yes, you are paid. Not sure why we sent you a past due notice 7 days after posting your payment. Just ignore it. OK. Now the lab that did the cardiac eval back in May. This is where I must begin my diatribe against insurance companies and their stupidity and what it costs patients.
For whatever reason, insurance companies are now requiring hospitals, labs, doctors, etc, to assign a patient a unique account number for every visit. So every time I go to the hospital, I'm still the same patient with the same insurance company, but I'm also a new account. When I pay my bills online with Quicken, however, it only allows me to have one account number per payee. So even if the hospital has decided that I have 8 different accounts with them in order to make the insurance company happy, I'm going to be happily paying them under one account number in Quicken because it never occurs to me that they would do anything this illogical. This is, indeed, how my hospital ended up owing me money. Because it kept sending me bills and I kept paying them, not realizing that every bill had a different stupid account number on it. Now that I realize, of course, there is a way to set up new accounts for the same payee in Quicken, but with all these bills, I'm going to end up needing a supercomputer just to open Quicken. This is just plain stupid and inconvenient for the patient. There has got to be a way for service providers to create a master account for each patient and have sub-accounts for each visit. Send the sub-account numbers to the insurance company but let the patient pay to the master account. It really doesn't seem that hard to me.
It gets worse. My next two calls were to two more labs. They both have all my insurance information. It's been given to them over and over and over and over and, oy, I'm tired just to think about it. The first company seemed to have some way to tie all my accounts together. From the new account number, they could reference my old account number and get my insurance information. But they wouldn't do that until I called them and told them to do it. They preferred to send me a past due payment notice instead of making the effort to find my insurance information and bill properly. Which is rude, but it's not completely insane like the final company I contacted.
The final company is the one that handles my blood tests. I am having blood tests every couple weeks, so this is no laughing matter. Still, I have to tell you that what their representative told me in complete seriousness made me laugh out loud so hard I almost peed my pants ( and if you're postmenopausal, you know that's not an exaggeration). In addition to the apparently normal stupidity of setting up multitudinous accounts for single patients and not tying them together with a master account, this company dumps the insurance billing information each and every time they are paid. So literally every time I have blood drawn and they bill me, I am going to have to call them and give them my insurance information all over again. I introduced the young man who was trying to help me to the extremely high tech concept of PAPER AND PEN AND FILES AND FILE CABINETS but apparently that is just too high tech for them. They'd rather use a computer system that regularly dumps the very information they need to get paid. He tells me that their programmers are working on this problem and they anticipate it will be fixed, perhaps even by 2003. Seriously! But here is the best thing he said to me, and the thing that really cracked me up: "We can't use paper because we literally don't know we're sending you a bill until you've received it." This is an exact quote. A word to the wise: if you own stock in LabCorp, get out fast! These people are straight out of Dilbert.
Finally, just to top off the morning, I called my oncology nurse and asked how quickly I should expect the thrush to be clearing up. She said that if I had to ask that, it wasn't fast enough. The doctor called in a prescription for diflucan. I gave the pharmacy an hour and a half to fill it while I talked to labs, etc., then I went over there. OK, no cars in the parking lot, no cars in the pharmacy drive through. I go to the drive through and ask for my prescription. First off, the guy calls me sir. I correct him and say I'm a ma'am. He confirms that the prescription was called in but it's not ready. It will be at least 10-15 minutes. I ask them to put a rush on it. The guy tells me that is a rush. I am so unbelievably tired that I could barely get myself to the drugstore, so I tell the guy I'm going to sit in my car and wait for it. Amazingly, the prescription is ready and I'm on my way home in under 2 minutes. So what happened to the 10-15 minutes? Honesty would be great policy, don't you think? Anyway, by the time I got home I was so tired I couldn't figure out why the garage door wasn't opening (I hadn't used the remote) and I was worse than a drunk trying to get the key in the lock to get in the house. I hope this medication works--I'd like to start feeling better.
posted by Karen Weber Tuesday, August 22, 2000
Wednesday, August 23, 2000
Because yesterday wasn't perfect enough already, I had more excitement last night. I apparently struck a blood vessel when giving myself the neupogen shot. I have a very large, very nasty looking bruise this morning. It's bright purple, except in the middle where it is red. I think my platelets are down again. I'm calling the doctor.The doctor didn't want to see me, didn't even want to talk to me. One of the women in the back office took my message and relayed it to him, then called me back. She's not a nurse, just a clerical person. I'm a little miffed. If the bruise is getting bigger, I'll call the nurse tomorrow morning when she's in.
posted by Karen Weber Wednesday, August 23, 2000
Thursday, August 24, 2000
Oh, boy. You can probably tell from yesterday's post that I had a perfectly miserable day. The bruise hurt. I put ice on it like the doctor said, but I had an amazing amount of pain in my abdominal area, especially on that side. I had to spend most of the day lying flat. I was dizzy and bending at the waist made the bruise hurt and increased my dizziness. Rick had made an appointment with another company to come and bid our pool. Well, that guy was here for about 3 hours -- from 6 pm onward. I was totally out of it. I couldn't sit at the table to talk with him or see what they were talking about. Totally miserable.Then I had to give myself my neupogen shot. I was a little nervous, to say the least, but I got it done without hitting another blood vessel. Then I sat down to go to the bathroom before bedtime, and that is where the proverbial you-know-what hit the fan. Or more accurately, didn't. My decreased fluid intake while I've had the thrush infection caught up with me, and I had all the classic signs of impaction. I now know exactly how Elvis felt when he died in similar straits. After 12 hours, 4 enemas, a suppository, and a lot of dirty work with gloves and jelly, I think I have it all out. The doctor told me that if I didn't have it out by afternoon, I'd have to go to the ER and let them dig it out. No way! I did this in college, working with a gal with advanced multiple sclerosis, so I know how to do it. So I did. It's ironic. I liked the gal I worked with, but I really, really hated that part of the job. Now I think of the amount of embarrassment it saved me, and I am so grateful for what she taught me. I know it must have been embarrassing and unpleasant for her, but she handled it with such grace and dignity. I used to marvel at that, thinking that if I ever got to the point where the only way I could have a bowel movement was to have someone dig it out of me, I'd rather be dead. Now I know that you do what you have to to survive. One day at a time. Or sometimes, one minute at a time. And you smile. And you go on. Because you must. There aren't any other choices if you want to live.
I was telling my massage therapist on Tuesday that I had never really understood the philosophy of One Day at a Time. She shared with me her own journey in coming to understand that as the spouse of an alcoholic. It's a daily struggle for her, even after years of doing the weekly meetings. I don't believe having that discussion with her just a day before this was a coincidence. I call these things Godincidences. He always provides what I need when I need it.
posted by Karen Weber Thursday, August 24, 2000
Friday, August 25, 2000
I am feeling soooooo much better today! I had a problem with my body temp last night - running between 100.3 and 101.3. Drank a lot of ice water, took a couple cold showers. I got it down under 100 before going to bed. It's normal this morning. Rick was so good yesterday - running to get whatever I needed. I rousted him at 4:30 for the enemas and he never complained. He stayed home from work for several hours to make sure I was going to be all right. Then last night he brought home the entire produce department from the grocery store. Fruit is really the only thing that tastes normal to me with this stupid thrush infection in my mouth. I really thought it would be mostly cleared up by now, but it's not. Water still tastes awful, but I'm forcing it anyway. I don't want to go through another day like yesterday ever again.
posted by Karen Weber Friday, August 25, 2000
Saturday, August 26, 2000
Shrinking Breast Cancer - using counseling, imagery and dietary intervention to improve quality of life for people undergoing treatment for breast cancer.Just took it easy today. Feeling even better, but now starting to have some bone pain from the neupogen. Hoping tomorrow will be better. Just tonight's shot + one more to go anyway, so we're almost done with this round. I've entered the dry mouth stage of the post-chemo. I have a nice big sore on the right side of my tongue, but it's not hurting too much yet. The left side is red and swollen as is the tip, so I'm expecting sores there soon as well. To be honest, I think these are the worst part of doing the chemo. They interfere with talking, eating, drinking, even sleeping. And they last for about 10 days.
Watched a great Danny Kaye movie tonight. I'd just seen Nathan Lane doing a tribute to him with the Boston Pops this week, so Rick picked up some of his movies for our weekend watching. Lots of fun!
posted by Karen Weber Saturday, August 26, 2000