A Useless Appointment With My CPAP

I go to a very good hospital for all my treatments. I usually have good productive appointments and don't feel I wasted my time. Yesterday was completely different.

Last week I blogged about Rebelling because I hate my CPAP machine so much. I was waiting to find out about my oh-so-important desensitizing process to be able to use the damn thing. Yesterday was my big appointment where I was to be educated. This is what I learned:

In order to get more comfortable with my damn mask, I should wear it around the house so I can get used to wearing it and then I should be able to start using the damn thing. That was not very enlightening. I had already tried it and still hate the damn thing.

I also learned what the options are for apnea treatment if you cannot deal with the damn mask:

• surgery - where they remove your tonsils, adnoids, uvula (the thing that hangs down at the back of your mouth), and part of your tongue (doesn't that sound disgusting? It will never happen to me).
• dental device - like a retainer which pushes your lower jaw forward at night. But then you have to be able to wear a retainer while you sleep.

I shall not be doing either of those. I will attempt to try the damn mask again but if I can't adapt, I ditch it and cope with the consequences.

I also asked about my problems when I do sleep with the mask I get these awful weird dreams and do not feel rested when I wake up. The reason I was given is that I probably never reach REM sleep without the mask and dream as much. So if I do use the mask, I can attempt to sleep with a mask on my face that I hate and have weird dreams that leave me feeling out of sorts. Not a good combination.

This is clearly a case where I should have skipped my doctor's advice and never gone on that sleep study last fall. All this in pursuit of a good night's sleep. Damn.

And I wasted an hour yesterday learning all this.

Not A Good Week Ahead

This coming week is going to be long, stressful, and sleep deprived. I don't know what I was thinking but I think the real answer is I wasn't thinking. This is my week:

• Saturday (today) - craft show where I will have a table all day
• Sunday: Lunch and dinner reservations with two different groups of people. Lunch at noon and an early dinner at 4 PM. 
• Monday: 930 PM MRI for my neck. I should be home by 11. I never stay up that late.
• Tuesday: Deep cleaning at the periodontist with novacaine. How fun! 
• Wednesday: The only good day because there is nothing on my calendar
• Thursday: Lunch plans with a friend. Sleep lab overnight to see if there is anything else wrong with me. This means another night of not enough sleep.
• Friday: Leave the sleep lab at 630 am and go directly to the gym.

What was I thinking? I don't know. I need to allow enough time for plenty of sleep each week. Monday morning I hope to sleep late. I also hope I can sleep in on Wednesday and Thursday since I will be up too late and do not expect enough sleep at the sleep lab.

My goals then for the week: focus on getting enough sleep and rest and pretend nothing will hurt. This is just a lot of poor planning on my part.

This is a blog about cancer after all

I realize this is a blog about cancer and living with a cancer diagnosis. but sometimes I don't blog about cancer. Well, I do have lots of other ailments to blog about. And I try to ignore cancer so I'm not living in cancerland where its all cancer all the time.

But it does loom in the background of my life often. Well, almost constantly. Its hard to make it go away. I am ignoring it. I have one of 'those' appointments coming up that I am really trying to ignore. Its one of the appointments where there are negotiations, watchful waiting and discussions on what to do next.

I have no new cancer research to write about now. I can poke around and find some - maybe later this week. I have no pinkification to whine about except this is the time of year for recruiting for all the pink walks. I skip all those commercials. 'I can walk sixty miles for someone who has cancer' and all that cutesy crap. You won't ever catch me in one of those walks. More power to anyone who chooses to do them.

One extra benefit aggravation of developing ailments which cause pains around your body is you can take your mind down that evil road to cancer hell very easily. With cancer, you need to be aware of your body and look out for aches and pains that don't go away and linger. Well with my new ailments, RA and fibro, you have ailments which cause aches and pains that don't go away and linger. I tell myself they can't be cancer because I can blame them  on RA and fibro.

I try to ignore them and live my life on the edge of cancerland as much as possible.

Pet peeves

One of my biggest pet peeves is tardiness. I hate waiting for anyone and I always try to be on time. I do not claim to be perfect as I am human and I am late sometimes. But I detest waiting for the same people over and over again. I don't like waiting for dinner companions, coffee dates, and doctors.  I detest waiting for people so much that I am sure I have blogged about this before.
 
The hospital I go to has little signs up saying that if you have been kept waiting more than 15 minutes to bring it to their attention at the registration desk. I have seen nurses come out and make an announcement that Dr so and so is running behind. I understand that sometimes doctors need to take more time with a patient who is having a bad day. We want our doctors to be able to do this but it may make them run behind schedule. So as long as they tell us, then it is okay. You also need to do your part by showing up on time. How is the doctor supposed to do his job if you aren't there at the scheduled time? Are you going to be late or are you not going to show up at all?

There is nothing worse than sitting around waiting for someone who is late and was the one who selected the meeting time and place in the first place. If you can't make it on time and know that, change the time, don't make me wait.

Even worse are contractors or other people you hire who are taking longer than estimated on a job and don't tell you. If they say two weeks and in week three are clearly not done and have not new estimate of an end date, I would get rid of them. When we redid our kitchen last year, I had a one month window for everything. I was very clear with the contractors that was the time frame and I wasn't budging. We planned ahead and it was done on time. I also was very sure to keep an open dialogue with them on what was needed so they could make me aware of unexpected issues arising (which they always do in home improvement) so they didn't cause delays and expense.

The reason why this is on my mind this morning is there was an article in the morning paper on how being late can harm your work image. "How often have you heard a co-worker say something like, “Sorry I’m late, I was on a call with . . .’’ It’s really not an excuse. If it happens once, it may be understandable. But when you do it repeatedly, it shows you are disorganized and disrespectful to the people you have kept waiting. And that is not a good image for you to build. Be on time. It’s the first thing you can do to being more successful at work."

Its not just about being more successful at work, its about being appreciated by your friends and family by doing what you said you would do and not letting them down or being disrespectful.

As long as they don't nag

In a new payment system in Massachusetts, doctors will be paid per patient and not per service. The better a patient does the higher the reimbursement for the doctors. Go read this article to explain the whole thing but here's the basics:

This new system works like this:

"Primary care doctors, specialists and hospitals typically have billed insurance companies and government programs such as Medicare and Medicaid for each individual service they provide to patients, including office exams, lab and imaging tests, emergency room visits, and hospital admissions - with few limits on the number of services.

Critics say this system, called fee-for-service, encourages doctors to provide more treatment than is necessary and discourages coordination of a patient’s care among different providers.

In the new system of “global payments,’’ insurers generally put doctors on an annual per-patient budget. This budgeted amount is higher for patients with complex medical problems.

Doctors are expected to cover all costs associated with caring for the patient with this flat fee. When primary care doctors keep patients healthy and prevent expensive hospital stays and specialists’ visits, they get to keep more of the budgeted payment. If a patient’s care exceeds the budget, doctors lose money on the patient.

This arrangement may sound uncomfortably familiar to “managed care’’ popular in the 1990s - when patients accused doctors on budgets of withholding needed care. But insurers and doctors insist this time will be different, because the budgeted amounts are more generous, and because insurers are tracking the quality of care doctors provide to make sure they are not denying necessary care to stay within their budget."

Everyone will need to have a primary care physician or nurse practitioner or physician's assistant to oversee their care. By getting people in for preventative care they hope to keep costs down. Sounds logical - it turns the practice of medicine into a proactive system as opposed to a reactive system as much as possible.

I think I like this idea. It will help catch bad things before they get really bad. The more expensive the medical adventure is the sicker you probably are.

I don't mind being reminded to get annual mammograms and annual physicals but just don't start nagging me about the rest of my health issues. I really am trying to lose weight - for the record I wear a size 12 and would prefer to wear my size 8 wardrobe - and I know its going to take a while. I also like wine with dinner and cheese and crackers for a snack and have zero self control when faced with a box of donuts (but only eat one). At my job that I go to my desk has a clear view of the snack tray in the kitchen as well as the table which frequently has an open box of donuts, bag of bagels or hermits. If I am nagged I get cranky and we don't the world with a cranky me.

Tempus fugit

Or time flies. (I had to look up the Latin part to make sure I got it right.) Some how we are approaching the end of 2012 and I have no idea how we got here. I remember partying like it was 1999 in the 1980s. I remember buying my first new-new car (as opposed to new-to-me) in 1989. When we were children half an hour until dinner was an eternity (but half an hour until bedtime was far too short).

All I know now is that I never seem to have enough time to do all the things that I want. Time goes much faster now. I have decided that is a fact. It has sped up. Something has happened along with global warming that has made temperatures go up and time go faster.

This week I am looking at my calendar trying to figure out how I am going to get everything done that I want to and I am not sure how it is going to happen unless I give up eating and sleeping or something.

And I don't even have a single doctor appointment and my schedule is still full. How I even have a week without doctor appointments is beyond me anyway. Last week I had four doctors and one x-ray. This week I have none. Next week I have one doctor and one back procedure. The week after I have one doctor and one back procedure. Then maybe another week off for the holidays.

But I digress. Time is going too fast. Some physicist must have figured out how to alter time and made it move faster. I am sure you agree.

We must stop and ask why?

Why is it on the days when you have to get up early you can't sleep the night before and wake up overtired and stressed before you leave the house? This is not fair. I have to go to a volunteer event and be perky and cheerful and answer the same questions forty seven times - is there WiFi? Whats the user name and password? How do we correct our badges? But I must say, everyone is nice, its just me who is overtired because I didn't sleep. I actually enjoy this conference every year and wish that I could stay for the day's sessions but because of both of our doctor appointments, I will go and help the exhibitors get what they need so they will be ready for the networking session that starts at 830. I will then leave and begin the doctor appointment rounds.

Now why didn't I sleep well? Because between the husband and the cat, apparently I am only entitled to a sliver of the bed about 10" wide, and I am slightly (but not much) wider than that. So the entire night I was squished. This is not a first time occurrence. It seems to be happening regularly. Our featherweight cat has decided he has a new place he likes to sleep which is approximately 1 foot from the edge of the queen size bed right under the pillows. He's happy. My husband is happy. I'm squished. When I get in bed first, I have plenty of room. Grrr...

Anyway, I have to get moving because I will be late and my husband is nagging.

PS My husband just read this and claims he had nomore room in the bed than the I did so the cat must be to blame and isn't too happy with the word 'nagging' so please read the last phrase as 'my husband is attempting to get me out the door on time'. And he's not a bed hog. The cat is.

Latest update

Yesterday I started my day with my annual physical. Sometimes I wonder if I need an annual physical when I go to so many other doctors but apparently your PCP is supposed to manage your health care and you need to see them if they are going to do this. Anyway, the verdict seems to be that I am still here and doing okay.

Nothing new was uncovered. My vital signs are normal. My weight, while lower than in the past, still has a way to go. I did ask the nurse to pretend it was 20 lbs less than the scale actually read. I'm not sure that she did that but it never hurts to ask.

My vital signs all appear normal. I was told to watch for more cough and head ache issues but otherwise sent for blood tests and told that I should be fine. We did discuss my back, ankle, yucky ultrasound, and lymphedema but those all seem to be under control for now.

I also go the results of last week's chest x-ray which is clean and the results of my bone density scan which is also good. Apparently my taking extra calcium and vitamin D has reversed my osteopenia and put me back into normal ranges (perhaps I should continue to remember to take my vitamins regularly...) Two pieces of good news that make me feel better.

I also straightened out my expensive Femara prescription. It is now switched to the slightly more affordable mail order version. So I feel better, more balanced, and slightly saner.

Today begins my overcommitted 48 hours. I volunteer for an annual conference locally where I need to be there this afternoon from 1-5 or even stay through dinner, and then back tomorrow technically from about 730am - 5. But Walter (luckily not me) has a sigmoidoscopy as a follow up to his surgery on Thursday at 1030 and I want to go with him. I also go back to the lymphedema clinic tomorrow for further evaluation. In addition, I need to get some work done, a friend is bringing me new curtains she hemmed for my bay windows so they need to be cleaned out and the windows cleaned, and I can't remember what else. But I feel over scheduled which leads to crabbiness and stress.

Something is missing

Monday I went to my new job and a walk with a friend. Yesterday I went to work all day. Today I am going to work all day. Tomorrow I need to work a good part of the day and get ready to go away for the weekend. Friday I have to be ready to leave here at noon. I feel kind of busy this week as I have to integrate my new job into my schedule but was thinking that something is missing. What is it? What's missing? NO DOCTOR APPOINTMENTS this week.

I have already had 21 appointments so far this year. This is the first week since Christmas week that I do not have a doctor appointment. Several of the weeks I actually had more than one, maybe two or three. But this week I have none. Next week I have one. The week after I have one. The week after we are on vacation. The week after I have EIGHT!!!!!!!!!!!!!!!!! So I guess it all averages out. But I am going to enjoy this week while I can. Today is going to be 80 degrees. I will go to work early and leave by 330 and go for a walk in the sunshine.

Timeliness

I try to be punctual. People who are chronically late drive me crazy. However this weekend, I realized I was making people wait. Saturday night I thought I had agreed with my brother that he would call me when he woke up and we would figure out our time schedule. He thought I would be there at 8. He called me at 830 and asked me where I was (he was still eating breakfast). I said I would be there by 915. I left here at 915 which means I was late. Then it turns out all the plans changed Saturday night after I left which is why I didn't know the schedule. But I did make people wait, which I hate to do. Now this was a family event as opposed to a work or doctor thing.

I have a part time job where they said I can pick my own schedule. It has taken me 8 months to get used to the fact that I can come and go as I please. I used to say I would be there at 830 and stress myself to get there in rush our traffic. Now I have finally given that up and just tell them what days I will be there.

But when I go to doctors, I get an appointment sheet that tells me what time my appointment is - this is the time the doctor will see you after you have checked in, been weighed and interrogated by the nurse (are you safe at home?), and changed into a lovely fashion statement gown that leaves you exposed. Then the doctor comes in after the appointed time because they are running late - could this be caused by late patients?

The appointment sheets I receive instruct you on the back to arrive 10-15 minutes before your appointment so you can get checked in, weighed, interrogated, and changed. I really do try to do this so I won't keep people waiting because I think that is the rudest and most disrespectful thing. And I would prefer to get the damn appointment over with and get on with my day.

I worked in the legal profession briefly (not as an attorney) and learned a sense of punctuality I have never seen equaled) where if a meeting is due to start at 10, it starts at 10 and ends when scheduled - whether 1 hour or four hours later. These are people who were trained to bill by the ten minute segment and are very time conscious.

Then I met my husband with the military training. I believe when you are leaving the house at 8, you are walking out the door with your stuff at 8. He believes that you are in the car which is completely packed and turning the key at 8 exactly. We do differ a little here but he helps keep me on time.

There are reasons for being late, a whole range of them, but if communicated by a phone call or message to say you will be late, is allowable, they are perfectly acceptable. To just show up late, chronically is rude and not acceptable. Is there any reason if you agree to be some place at a time - such as work, doctor appointment, meeting - you can't plan so you get there on time?

If you are late for your doctor, you are going to cause them to run behind all day. On the other hand, if your doctor is running excessively late, they should tell you as well. My doctors generally do tell you if they are running late. Its all about respect and caring.

Its all a bunch of numbers

59 is the number of doctor appointments in 2090. In 2008, I think I had 70 something so the number is reduced but if you think that 2008 also included radiation trips, it is actually going in the wrong direction.

2 is the number of minutes that I missed New Years by last night. My back hurt a lot yesterday because I fell in the snow and I was in my pjs at 4 pm and asleep by 7. Then my husband came up at 12:02 and woke me while getting into bed so I missed watching the ball drop.

20 is the number of pounds I want to lose this year.

But it is all numbers which I can easily ignore this morning. It is 2010 and here's some optimism for a healthy year because I'm due for one.

Aggravation and the return of brain cells and other things

Yesterday, call me slow, I received an appointment list in the mail from the hospital giving a list of my upcoming (and last week's) appointments. I thought about it and realized that my physical with my primary care physician had disappeared from the list. I checked and realized it disappeared from the appointment sheet probably in December - and I never noticed until now. So maybe I am slow.

Anyway, I called and was told yes your appointment was canceled due to a scheduling change by the doctor. I can understand this. These things happen. What I don't get is the following:

- They never rescheduled the appointment. They told me they only deal with cancellations about a month or two before they were supposed to occur.
- The doctor is booked until August and they can't schedule August appointments until Monday because that is February and they book six months out.
- So, if they didn't deal with my cancellation until March - the month before - would they be rescheduling me for September?

I tried to communicate this to the woman on the phone and she said 'dont shoot me, I'm only the messenger. They (the doctors) change their schedules and we (the phone people) take the heat for this.' Well that helped a lot. Of course you take the heat if you don't reschedule people for cancellations when they happen. Anyway, I got a few hours of sleep on Thursday night so I was nice and aggravated and very 'pleasant' on the phone. Monday I will call back and sort it out.

In the meantime, last August I reported losing all kinds of things and they have been reappearing. The missing down comforter was at the cleaners under someone else's name, the missing hydration pack was in the basement, and my missing yak traks were hidden in the closet and I found them yesterday. This is very important as locally, we are living on a glacier with glare ice everywhere. If only I could find my brain cells. Then I would be happy.

Today I am off to be educated on how to be a good volunteer for the American Cancer Society in a three hour training session this morning. Actually I think it will be interesting. But I could have slept late today. Perhaps crabbiness will reappear. These days my husband is quick to point out the return of the crabbiness. My back only hurt a little last night so I did sleep a fair amount which helps this situation.

A friend is also coming over for a walk on the bike path which was plowed after the last storm. But then it rained and froze and the portions of it in the shade are skating rinks. Yesterday I tried walking and nothing like water on top of ice to make things interesting. This made me determined to find the yak traks. Brain cells, where are you?

Its different for everybody

Yesterday I went to the doctor with a friend who was just diagnosed with breast cancer. She goes to a different hospital than I do. I found it interesting how different the treatment plans were for her vs. what i received. Some parts were the same but some were different. Her recommended chemotherapy is the same drugs administered differently than what I received. She is having more tests that I ever did before surgery. Needless to say, it was educational. It was nice not being the patient for once, and to be the support person and writer for answers to all her questions. It just reinforces that everyone's cancer is different and is treated differently.

Today, I get to call and deal with my appointments. Sometimes I think they do these things just to confuse us patients. (If we are confused, maybe we can't complain as much.) I have several different doctors who want me to come back and see them. Some of them say come back in X months and immediately you get a little reminder in the mail saying the date of your follow up appointment. Other doctors you never seem to hear from with a follow up appointment. The surgeon wants me to come back in December as a follow up to my June appointment. I called to ask and they said they aren't scheduling December appointments yet but I should have the date sometime in September. One of my other doctors wanted me to come back in October after my June appointment. I didn't hear anything and didn't worry about it. Then I was talking to her office and asked about the rescheduling and apparently they missed the note and now she doesn't have any openings in October so I go back into see her in September instead. So now in addition to remembering when I am supposed to go back and see my doctors, I also need to remember which ones schedule months ahead and which ones work on short notice.

I also have a follow MRI in a couple of weeks. When I scheduled it, I was told I needed a blood test due to the contrast agent and should go down to the lab to have it done. So I went. But inthe mail yesterday I received a reminder to go for my blood test. Now I have to call them and find out if I need more blood work. Grr. More confusion for us patients. Just to keep us on our toes.

Today's big excitment is I am going for a walk before working at home and going to my support group. How is that for an exciting life? Maybe its time for more pictures of the garden or the cat.

Off to Lahey again

A day with out a trip to Lahey is like a day without sunshine. Three days in a row so far this week and its only Wednesday. But I have nothing scheduled for the next two. Crossing my fingers that this morning there is nothing there but a false positive from the MRI and I don't have a second area.

I also changed the name of my blog from Caroline's Cancer Blog to Caroline's Breast Cancer Blog as I hope it reflects the true range of my illness.