Doctor Questions

We are always told to write down your list of questions for your doctors and even bring someone to write down the answers. This can be appropriate for when you are first diagnosed with something nasty. But it doesn't hold true for regular follow ups with  your other doctors.

Over the years, I have learned not only to bring a list of doctor questions to appointments. But I have also learn to break it down into as few as possible, into two categories.

Category one is for the list of issues you have noted since last seeing them. For example you had the flu in November for ten days. Or have been under a lot of stress from work recently.

Category two is for as few questions as possible. Like three if you can do it. For example, if you were seeing your cardiologist:

• What was my latest test result and what does that mean?
• What are my treatment options for now?
• What is my prognosis/next steps?

They may sound simple, like in the 'duh' category, but they are the ones you really want to get answered and take note of the answers.

I can't tell you how many times I got to my doctor appointment and have a huge list of questions and only get through the first few. Prioritize. Keep it simple. Your doctor is probably short on time so you can't overwhelm them with too many things at once.

However if you have a huge issue, you need to make sure that is the main topic of your conversation. Its your appointment and you need to make the most of it. So be efficient.

My Back Pain Break Is Over

Just over a year ago, I switched to a new back pain doctor because my old one was an idiot. I like my new doctor. I saw him a whole bunch of times through 2017. At my last appointment, he said to me "instead of scheduling your next appointment, why don't we wait and see how you do and you call me when you need to see me?" I thought that was fine. I have not seen him since November and have nothing scheduled.

Unfortunately, my back is very unhappy with me in many ways. The pain level breaks through my pain patch. This has been going on for a week or so. I might wait another week or so before calling but I don't know how long I can last.

Damn, damn, damn. This does not make me happy. I didn't lift or carry things anything. I have done some laundry today but that doesn't usually hurt my back. Today I think I had an uncomfortable chair at the garden club meeting today.

On a positive note, it has been a while since my back has been this bad and required any treatments. This has been a very nice break. But at least I am not seeing my oncologist.

Today Is The Big Day

I have been waiting for this day for nearly five weeks. This is the day I go see my surgeon for a follow up. I have my fingers crossed that all is well and I am given the green light.... to drive that is.

I have not been able to drive since October 5, the date of my surgery. Originally I expected that my surgery would be a minor arthroscopic clean up of my knee and I would be all healed by now. But now, during surgery they found what they really needed to do was to repair my meniscus so I don't lose any more stability in my right knee (I need all the stability I can get as my left knee has a torn ACL and likes to give way sometimes).

So they did the right thing (and I don't regret this at all) and repaired my knee. When I woke up they told me its four to five months until I am healed. At my first follow up, ten days after surgery, I asked if I could drive and was told not yet.

Today is my five week (minus one day) follow up and I have had three weeks of PT so far, so I hope this is the big day and I am allowed to drive.

If I am not given the green light to drive, I will probably cry. If not in the doctor's office but later on. Its so restrictive and depressing to be stuck at home. Walter, my husband, works all day. I have been begging drives off people, taking cabs, etc.

But I have over due library books, I can't go to the grocery store, I can't get together with friends. I am at home all day from 7am to 5pm, five days a week. To top it off, I have had a cold since last Thursday. Today I am finally feeling normal, after 14 hours of sleep. And I have been eating too much left over Halloween candy.

Its not that I want to go out all day, every day. I just want to get out of the house and see other people. Its I just want my life back. I wouldn't mind going to the gym but I am sure that's another few weeks.

So cross your fingers for me. Or send me kleenex.

A Sort of Medical Vacation

I can't drive for the next three weeks - until November 8. I was concerned about all the doctor appointments I booked for myself after this week's surgery follow up when I thought I would be given permission to drive again.

Then I got a bright idea. I am going to take a 'medical vacation' and not go to the doctor until after my next surgical follow up. I mean why not? A mental medical vacation is a great thing to do several times a year. I was talking to a friend who's husband had gone through colon cancer. She talked about having a week off as being a sorely wanted break. I want three weeks off. Because I am whiney. And because I can't get there.

I have found a Lyft driver to get me to physical therapy which starts this Friday (and continues for six to eight weeks). I have arranged a discount rate to fit my budget. But the most important thing about my medical vacation is that I do not need to go to the big 'hospital' any time soon. I can't even drive my father there because I can't drive....

Back when I used to work for a non profit which provided support groups for cancer patients, one of our main features was that our support groups did not require patients to go back to that 'hospital' where all the bad stuff happens - like surgery and diagnosis. There is a huge emotional burden on cancer patients every time they head back to the damn hospital (and it does become a 'damn' hospital pretty quickly).

One day, I was heading for the hospital to go to their evening breast cancer support group. I was hit by a huge wave of emotion that I really did not want to go back there again. I had been there too much. I had too many bad things happen there - two cancer diagnoses. I didn't not want to be there any more than I had to. And no I don't go to that support group any more.

So that was the long way of saying, I am on a medical vacation. I will go to PT three times a week and do my exercises. But I will not go to the doctor - with six or seven appointments in November alone.

My Cholesterol Improved

I have no idea what I did but my cholesterol is much better than it was a year ago. I don't know what I have done differently with my diet (I thought I had adopted a whole bunch of bad eating habits) but my total cholesterol dropped more than 50 points in the last year. Maybe I need a burger and fries for lunch today...

That was the good news. The bad news is I have referrals to three different types of doctors - ENT, eyes, and a pharmacotherapist.

The pharmacotherapist is going to review all the meds I am on. I like that idea. I have so many medications from so many doctors. My PCP is concerned about too many interact and why I am on them and how can we get rid of some. Finally someone is taking a look. One big part of the problem is my previous pain management doctor would just increase my meds without explaining or change to a new med with no explanation. Now my new pain management guy is actually talking about reducing some meds and has changed some already.

My PCP told me that a lot of my weird numbers like heart rate and others can be screwed up by all my medications. She sent me for a pile of bloodwork and an EKG since my last one wasn't so great.

So I thought it went well. I even lost 5 lbs. But I forgot to ask her one key question. Damn. I'll send her a message later.

So after cancer, I like this kind of doctor appointment. She looked at my big picture and can't find any reason I might drop dead tomorrow.

Off To My Primary Care

This morning I go off to my primary care for my annual physical. Although there are lingering thoughts of 'what if she finds something bad', I will squish them down for the duration.

However after cancer, even though you have all sorts of oncologists and other fun doctors, your primary care is the one who is supposed to oversee your care. Hence, I have a paltry list of 15 questions for her. And I assume I will be sent for blood work after and maybe other tests. I expect I will be there for a few hours.

I am looking forward to talking to her about multiple issues that do not fall under the care of any of my bazillion specialists. And there are a few. If someone (besides me) can pull all my medical crap  together and make sense of it, I will be happy.

After I will go to the gym to work off any residual stress.

Oncology Anxiety

It doesn't matter how many years out it is but a visit to the oncologist always is uncomfortable. Its unsettling. Its alarming. Its distressing. Its ominous. I can't come up with enough words to describe it. And its today.

I had my annual mammogram back in July and then saw my surgeon. Technically, I am supposed to be followed by my breast surgeon for life after treatment ends. But his office was difficult to schedule with so after a few years, I dumped him. I also dumped my rads onc a few years back. She was pretty useless too. She used to tell me things like I should stop working so my husband could support me since I had had cancer. Not good medical advice.

I was originally supposed to see my oncologist after my mammogram but the surgeon took over. I had a momentary cancer freakout last winter and ended up at my surgeon's office. He told me his office would now start following me after my mammograms and had an appointment with his office scheduled for the same day. So my oncologist asked me if I wanted to see her office on a different date - to spread out cancer follow up appropriately.

Anyway, so I get to go see my onc's NP today. I am still on (or back on) femara for another couple of years. So today I am a little unsettled, alarmed, distressed, etc. You never know when you see an oncologist what they might find....

Damn.

Waiting Around

I hate waiting. I pride myself on being on time. I think that people who constantly run late are rude and selfish because they are making people wait on them. They are not considering anyone else's feelings or needs. Basically that is just damn rude.

Social occasions aside, waiting for doctors is even worse. Especially when you are not feeling well. This is one reason why I do not like Emergency Rooms and will only go if I am literally dripping blood (and will therefore be put to the front of the line) is I can't stand waiting around.

A year or so ago, my opthamologist asked me to find a new one. Basically I got fired by my eye doctor because I dared to complain about waiting so long and not being a good patient. I was pissed off about waiting and decided to complain on Yelp.

In comparison the hospital I go to has had a policy for a long time that patients should not be kept waiting more than 15 minutes. I had a doctor in the 1980s who had a sign on her office door that said "Patients Should Not Be Kept Waiting For More Than 15 Minutes". Sometimes this works, and sometimes it doesn't.

In recent years it has gotten even better. Some departments which seem to run late often keep white boards posted in the waiting rooms telling you about doctors who are running being. All departments when you check in usually tell you if a doctor is running behind. And they have signs in the waiting rooms encouraging you to ask if your doctor is running behind if you are kept waiting more than 15 minutes past your scheduled time.

I love this policy. I love being kept on top of how long it will be.

I just read an article this morning about how some other Boston area hospitals are finally understanding the importance of not keeping patients waiting. Their reason? Patients are finally speaking out on social media on being kept waiting.

If you are a patient at the 'holy hospital of the best doctors in five hundred miles' you are supposed to sit quietly and wait to see the doctor who is going to cure you of everything quietly for hours and hours. I think that's crap. Social media is putting pressure on them to finally act. How nice.

As a patient, I say 'speak up on social media' to pressure your medical center to treat you as a patient who is a person as well, instead of being a patient patient.

Those Nasty Complications

I often wonder in cancer treatment, which is worse - treatment or complications? I think complications win that one. To me complications mean more doctor visits, more drugs, more expense, more whininess, and less happy results.

In recent years, we have had the whats-her-name effect (this is what happens when you blog too early in the day) where women are getting bilateral and unilateral mastectomies at higher rates than in the past. There is no real proof that mastectomies are better than lumpectomies with radiation for early stage breast cancer but many women opt for them anyway.

But there is a problem. New research (because we always need new research) shows that more often mastectomies are often accompanied by side effects and complications.

"Researchers identified 105,211 women with early breast cancer diagnosed between 2000 and 2011 and identified treatment complications within 24 months of diagnosis and compared complications by treatment. ...

"Lumpectomy plus whole breast irradiation treatment was the most commonly used treatment. Mastectomy plus reconstruction was associated with nearly twice the complication risk of lumpectomy plus whole breast irradiation treatment (54.3% vs. 29.6% complication risk among younger women with private insurance and 66.1% vs. 37.6% complication risk among older women with Medicare) and was also associated with higher adjusted total cost (an average $22,481 more for younger women; an average $1,748 greater for older women with Medicare) and complication-related cost (an average $9,017 greater for the younger cohort; $2,092 greater for the Medicare cohort). Brachytherapy had modestly higher total cost and complications than whole breast irradiation treatment. Lumpectomy alone entailed lower cost and complications in the Medicare cohort only."

And what do side effects and complications mean? More doctor appointments, more treatment, and more costs. I don't know about you but honestly, in addition to better health, I am all for fewer doctor appointments, less treatment, and less cost.

If I could go to one doctor once a year and get treated for everything all at once, I would be much happier. But since that isn't going to happen, I still want the fewest visits possible. 

If I am given a choice of two treatment possibilities. One has less invasive surgery but would require additional treatment and the other has more invasive surgery but no additional treatment, but has a higher risk of more complications? I think I would always go for the less invasive ones that requires more treatment.

More complicated is never better.

(Whats-her-name is Angelina Jolie. I think I finally woke up.)

A Long Day At Doctors

After all my traveling, I realized that my body was not being very cooperative. I have increased knee pain (in the new bad knee, as opposed to the old bad knee), I have new back pain higher up than previously (it came and went for a few years but is not more there than not), and my neck and right shoulder have been giving me lots of problems.

So after waiting around for a few weeks, it became time for all my appointments. I had three different medical appointments, in two different facilities 30 minutes apart, yesterday. I started at physical therapy about my neck and shoulder. After speaking to the therapist, he did some stretching on my neck and gave me a  whole bunch of exercises. I will go back and see him twice a week for the next six to eight weeks. And its not that convenient a location.

Next I saw the nurse practitioner of my pain management doctor. She talked to me and pressed all sorts of painful places on my body. She upped my medications and sent me for x-rays. I am supposed to go see her again in three week to see where we are and see if I need an MRI or other imaging. I haven't had a spine MRI since around January 2009 and the question will be if my insurance will pay for it, if I really need it. 

I am kind of fed up with this doctor. He has said to me that even though he has been treating me for nearly 7 years, he does not think there is a need for any new imaging. Any new pains are only caused by my existing conditions. If I don't get anywhere with this NP and doctor this one last time, I will probably find a new one. A friend of mine also saw him for  years and then went to a back surgeon who told her she should have had surgery a long time before. This does nothing to my comfort level with him..

Then I went to X-ray for five pictures of my knee, four pictures of my thoracic spine, and three pictures of my lumbar spine. That was lots of fun. I am not good with the contortions required for some x-rays.

Finally I saw my orthopedic surgeon. My knee was back to its throbbing at night that I had experienced last winter and spring before he injected my knee. I hoped for a new injection which is what I got. But it made my knee really sore and I hobbled out to my car. I went home and took a 2.5 hour nap. I think I was a little tired.

Overall it was a good day, just very long for me. I am not sure I am up for a long day like that again. 

This is just a bit of my life with millions of doctors. At least I didn't see any oncologists. That part makes me happy.

A Post for Sick People

As a follow up to my earlier post for Friends of Sick People, here's a post for my advice for people who are sick.

As a patient with an icky medical diagnosis, you need to remember the most important person you need to take care of is you. I know you love your children, spouse/partner, and other people close to you but you need to focus on you for a bit. You will need more rest and care than usual. You will spend a lot more time at doctors and other appointments. Any time when you are not at work you will probably be focused on your (lack of ) health. Nap time!

You may find the need to set some rules and requests for other people. You are not being rude, you are letting other people know how they can best help you. You need to rest and take care of yourself, go to doctor appointments (and then recover from them).

Personally I decided I needed to limit social visits and phone calls. Newly diagnosed with cancer, and a cascade of additional medical issues, I decided I was not going to answer a thousand phone calls, texts, and emails asking the same (damn) questions and decided I would provide information for others in my blog. If anyone wanted to know how I was doing, they need to read my blog (unless you are my parents, they are allowed to ask me questions or my husband who went with me to all important appointments). If people wanted to come over, their visit had to be short.

People often want to be helpful but are unsure how they can help. If someone says anything about any kind of help, you can give them concrete ideas on what you need. A casserole for dinner? Help with laundry? Do you need someone to help get your children to school on some days or maybe even getting you to the doctor?

And its not just the physical issues but also your emotional self. At my second cancer diagnosis I decided I needed emotional support and joined a support group before my second surgery. I wasn't going to let cancer suck any more enjoyment out of my life.

If you feel you need more emotional support, start with your doctor or a social worker at your local hospital. They will have access to information on where you can find help. In addition, look for local support groups through your church or local support centers. And the stress? I'm not going there.

It is important to remember that the most important person, emotionally and physically,  is the one with the ailment.  Don't forget!

Annual Physical

I am just fine. I am damn happy. And perky! And feeling no pain. No that's a big fat lie. I have a lot of pain. I ran out of steam yesterday. I was very tired by the end of the day. Apparently I did too much. All I did was go to the gym. And then the library and one store. That was it. I was wiped out. I even took a break after the gym.

Next week I have my annual physical. I have two options: go in and lie and say everything is fine, or go in and tell the truth about how I feel. This could put me back on a medical roller coaster of a sort. At this point I am not concerned with out going back on the medical roller coaster as I am with being as healthy as I can.

I do not think I have something bad going on. Its just my annual chance to sit down with my primary care physician and go through how I am feeling, what are my concerns, and what we can do to make me do better, or even improve my health - now that's an interesting concept.

Now I just have to make a list of what I want to talk about. Damn.

My Mini Vacation is Ending

I have enjoyed a few weeks without a doctor appointment. I have had 22 appointments so far this year (I have a spreadsheet of doctor appointments to keep track of my co-pays and out of pockets for taxes.) Then I haven't had an appointment for two weeks and don't have one for another week. So its been a three week break. I like that.

Then next week I have three appointments followed by six more in the next six weeks. That's more normal for me. Last year the magic number of appointments was 67, the year before 58.

So if I go to the doctor so often, shouldn't I be healthier?

How strong is that 'little voice'

Tomorrow I have a doctor appointment. Its not a big deal, just a follow up with my rheumatologist, including a discussion of my blood work last week. On the surface its not big deal. I don't expect any big news. Maybe a little tweak in my medications at the most.

But there is always a little (tiny cancer 'what if') voice in the back of my head at every doctor appointment. The question is always 'what if' something isn't right that leads to more testing that leads to something else which finds something 'bad'.

I can't help it. That little voice is an evil thing. Learning how to balance that evil voice is a lifelong journey after cancer. It never goes away. Keeping it quiet is the challenge.

When I had my hysterectomy before breast cancer, nearly 25 years after thyroid cancer, I was compelled to ask my surgeon if there was any chance of cancer there. I couldn't stop myself from asking. She assured me that they would 'slice and dice' to make sure there was none.

And there was none.

After breast cancer, that evil little voice reared grew in volume again. With a vengeance. Its only been over 8 years but that voice tends to sneak into the back of my brain. It tries to tell me that some ache or pain could only be 'really bad'. I can't let it run my life.

But I will go to the doctor tomorrow and tell that stupid little voice to keep quiet. I hope. Maybe if I could leave it behind that would be better.

Maxed out

Every year it has happened since 2007 when I was diagnosed with breast cancer - we max out our health insurance out of pocket expenses. I just found out when I went to pick up some prescriptions the other day and figured out we hit our max on Dec 11. This is much later than recent years.

I didn't have any surgeries or anything major happen this year - except my knee injury. I had a total of 58 medical visits - this does include eye doctor and dentist - plus an additional 10 or so separate trips for blood work. This is the most appointments in at least five years. And I do hope this is not a new trend.

This is one measure of how (un)healthy I am. I go to the doctor at least once a week. So far I only have 13 appointments scheduled for 2016 - and I am sure this number will grow. In January, I have four scheduled appointments - that's one each week on average. Its a good thing I stopped working so I have time to go to the doctor.....

My medical finances may be maxed out but I think my tolerance for doctor visits is maxed out as well.

I got fired by my eye doctor

I consider myself a proactive and vocal patient. With my health I see so many doctors and spend a lot of time trying to make sure everyone is on the same page. They all need to be aware of my ailments, medications, and allergies. I have so many ailments that I often present issues to all my doctors they do not see every day. My medical care is important to me and I want a medical team which cares about me.

I have never been a huge fan of my eye doctor. I started going to them because of convenience. I have never felt they had the patient's interest in mind, they were really out for the money. At every visit I felt like I was part of a cattle call.

When you arrive, you stand in line and are greeted by one of four receptionists. They are okay not great. Never very social and treat you as just another number. Then you go sit in the big waiting room, unless you are there for contacts which has a different waiting room or for the other doctor who is on the first floor. Then you sit and wait to be called. No one talks. Every one sits there quietly. Its not fun. And you always have to wait for a good while before being called. Its just a pain in the butt.

Once they finally call you, you get your eyes quickly checked by a tech and then sit in the hall. Then another tech finally calls you again and you are seen for a few minutes. Your vision is checked and eyes are dilated if necessary. Then you go back and sit again. Finally you see an eye doctor for about five minutes.

I know they have to wait for your eyes to be dilated. But all the waits add up. I have never been out of there in less than 1.5 hours. And I never feel like I got individualized care while there.

My most recent visit was earlier this month. I was pretty peeved. I arrived on time and greeted by an uncaring receptionist. Then I went and sat down in the first waiting room for half an hour. I went to ask if they were running late as I had been waiting so long and their response was 'you are the next one to be called'. I asked if they always ran late and they just said 'you are the next one to be called'. I asked if they ever told patients when they checked in that they were running late and they said 'you are the next one to be called'.

I gave up and went back to the waiting room and said loudly something along the lines of they didn't seem to care if patients waited a long time. The woman next to me said quietly 'you always have to wait, they are double booked'. I said that's just rude.

So when I saw the first tech, I said something to her and she said she wasn't aware of any delays. Then when I saw the second tech, I asked her and she said she would speak to the office manager. Finally when I saw the doctor, I said something to him. He seemed surprised that waits were that long and said he would look into it.

As always, I review everything, especially things that annoy me. So I Yelped it and gave them 2 stars. Then I got a follow up email from them and a call from their operations person. She did ask me why I was upset and said she would look into it. She mentioned something about the eye doctor was concerned I had written an online review. I thought that was resolved.

Then yesterday I got a letter in the mail stating that I should look for a new ophthalmologist. So I updated my Yelp review and gave them 1 star.

I was ready to find a new eye doctor after my unpleasant last visit. And they are just forcing my hand in this. But I still do not think they are about their patients.

Characteristics of a good doctor

I found this article online on what makes a good rheumatologist. But I really think the criteria should apply to all doctors.

The criteria are:

1. Makes Time for You - When you have an appointment they focus on you and take time to answer your questions and do not leave you hanging when they rush off to their next appointment.
2. Is On Your Team - They make you the leader of the team. They back off and let you make the decisions on what is best for you but also know when to more strongly suggest a different treatment.
3. Is Available - Works to fit you in or speak to you on the phone when you really need it.
4. Is Compassionate and Resourceful - Warmth and concern will allow you to relax and ask questions and bring up concerns.
5. Has a Sense of Humor - if they aren't relaxed enough to bring a sense of humor with them, you may never be able to get them to open up with you and you with them.
6. Don't Be Afraid To Switch - Doctors, like many other things, are like dating. If  they don't make you happy, move on.

I have learned to speak up to my doctors and make sure I make decisions instead of letting them railroad me into a decision. I also want a doctor I can get on the phone, get into see, and talk to honestly. If I can't do this with my doctors I fire them and move on.

This has taken me a long time to get to this point. You spend more than 30 years dealing with multiple doctors and conversations that always lead to 'with your medical history, we need to be sure' and you will be right there with me.

A good doctor will lead you to better care and better able to manage your ailments. So go find a good doctor who will lead you on the road to better care for you.

Can I be a person not a patient?

I often feel I spend a good portion of my life going from medical appointment to medical appointment. My calendar is full of doctor appointments, reminders to call different doctors, or notes on prescriptions.

My schedule is set for the rest of my life by medical appointments. Yesterday I wanted to go to the gym in the morning but had to wait until after the eye doctor for my dry eyes, which force me there twice a year. Those dry eyes, along with dry mouth, are a 'benefit' of my rheumatoid. Which is followed by a dentist appointment on Friday morning, which will also delay my getting to the gym. Or force me to get up early to go to the gym first.

I used to work with a woman who scheduled all her doctor appointments for the year in one week. I'm so jealous.

Normal people don't go to the doctor as often as I do. Their calendars are filled with friends, fun, and adventures. I get to go to the doctor.

A busy week

I have a busy week scheduled. Some how, I have four doctor appointments, plus I need to work two days, go to the gym three days, and keep packing to move. Oh, and find a new place to live.

Tomorrow, Sunday, we are having our neighbors over around 9am so they can take a look at our house to see if they want to buy it. I am giving them first dibs because they are nice and I know they have been  house hunting for a while. But that means today I have to make the house look semi decent so they can actually look at it tomorrow. Then we are going to four open houses in the afternoon.

Monday, Wednesday, Thursday, and Friday I have doctor appointments. These are just a major time suck and I need to remember everything I want to ask them all (that means I need to start write them my questions down). And I need to get bloodwork done.

I think I am going to work Monday after my first appointment and then another day later in the week, maybe Thursday.

Oh, and did I say my back is giving me lots of pain these days? That could make me whiney.....

The new doctor

So I met my new primary care yesterday. I think I like her. What's interesting is that what she is concerned about with my health are not the same things as my other doctors.

First of all she called me anemic. My red blood levels have never been the same since chemotherapy. Even though my last chemo was in December of 2007. No one else has ever said something about it. But she said its not that bad since its within one standard deviation of normal (that took some recall of calculus and statistics to make sense).

Second of all, she was interested in what she called my missing blood counts - Vitamin D, Vitamin B12, cholesterol, and more. So I am going for a whole pile of blood tests probably tomorrow morning because they require fasting.

Third she wants to see me with all my test results in about a month to get back to me.

Finally, she talks a lot. But she also listens. So I guess this has a chance.

Call me optimistic.