Taking The Good With The Bad

Sometimes, or maybe most of the time, I never get good medical news. I swear, my doctors go off script all too often. So yesterday I got some good news and some bad news.

First the knee doctor said I can start driving. But I need to take it easy. I need to be able to slam on the brakes with my restructured knee. Apparently the surgery did some restructuring but I am not a doctor so I don't really understand it. (All I know is I have lots of knee exercises.) First before driving, I have to practice driving in a big parking lot (like when I first learned to drive) or in our quiet neighborhood to see how it feels. And start driving slowly, not just not getting speeding tickets, but take it easy and work up to driving long distances. My husband was with me so he heard it all and will keep me restricted (maybe I should have left him in the waiting room).

In addition, I don't have to wear the awful, uncomfortable brace any more. I have graduated to the little soft brace which has little metal hinges and gives support. But I still need to be careful with my knee. I can't stand on it for long periods of time. I can't bend it more than 90 degrees, except in PT.

I can't go back to the gym until mid to late December. I should continue PT for at least the end of the year. And I need to go back to the doctor in two months.

After getting all that wonderful news at the doctor's office, we headed down to the blood lab. When we checked in they told us there was a 40 minute wait. But by some miracle we only waited 20 minutes. Today I have a nasty bruise from where they took blood - that happens sometimes.

This morning I got my blood test results. I know I am going to get calls from two doctors because some of them are way different than before. This means medication changes and doctor appointments.... Oh, joy. (No, nothing major but its just concerning when they change too much.)

So it was a good and bad day. But we went to the grocery store so we now have food to eat. I'll just wait to hear from my doctors.

Back and Forth

Adding to yesterday's post on the evil voice, I can go weeks, even a few months, and feel that I am doing okay and I am in status quo of a semi-healthy state. Then I go over to the other side and think my body has let me down and I have some new ailment. Or an ailment has decided to act up again.

Its just unfair. Seriously.

But I digress. I felt well for about a week. By well, I mean sort of normal. Then we came home and my back started killing me. And my knee hurts. And my neck hurts. Then I am sure next week at least for a few days, I will feel fine.

The hard part is the balancing. Every day I wake up optimistic and then I do something like try to move, or get up to head for the bathroom. Some days I can manage the basics without saying 'ooch, ouch' constantly. Some days, people start to look at me funny when I start talking to myself 'ooch, ouch, ooch, ouch, ooch, ouch....'  You get it.

So some days its good. Some days its not. I never know. I can have big plans for the day and then my body says 'no you aren't going anywhere'. I can't count the number of times I have changed plans simply because I can't go anywhere.

Back and forth. Every day. Its a crap shoot. Back and forth.

Good News/Bad News

So the good news is that heart disease is becoming less of a problem for many Americans and the death rate is down. But the bad news is that cancer is beginning to take over as the leading cause of death of Americans. It is already the leading cause of death for Asians and Pacific Islanders.

Well whoop de do. Does that make me any less likely to die of heart disease or cancer? Not really.

Managing All That Bad News

Recently the news has been dominated by all sorts of horrible headlines on all these tragedies (and politics). It can be very hard to take for everyone. I admit there have been so many events that every day on the news you hear about another one and you begin to wonder 'that really can't be another one, it must be the same one I already heard about'. Sometimes the media becomes a blur of blood, bias, guns, and gore. 

I recently found an article that discusses how to cope with all this bad news. The gist of it was 'turn off the news' which I find to be sound advice, especially if you want to preserve your sanity. 

"This constant churn of harrowing news is physically and psychologically unhealthy, and you don't need to be directly involved in a tragedy to feel its effects. To the concerned viewer, this pain can feel unavoidable or even necessary. It might be a little bit of both. The truth is, in an age of unfettered access to the worst of humanity, we have to act as our own gatekeepers if we want to stay sane."

It made me think that as a patient, I get a lot of bad news directed at me. And I often get the question 'how do you cope?'. 

Over the past nine years, I have learned to cope in my own way. When diagnosed with breast cancer, I quickly learned that I could not digest all the implications right away. It took time - time for the latest to sink into my brain. 

I started trying to learn all about my cancer and treatment options. I immediately went into information overload and my brain fizzled out. So I basically turned off my brain for anything past the stage of treatment I was in. I couldn't handle any more. While I was coping with surgery, I learned about surgery, post surgery, potential issues including lymphedema. Once I was through surgery, I learned about chemotherapy. I took it in stages so my brain could cope.

A big part of the trauma of cancer is coping emotionally. And that coping extends to outside issues as well. I can't live in the world of  'all bad health all the time' or 'all cancer all the time'. No one should live in the 'all bad news, all the time' mode. We can't keep our sanity and deal with all the doom and gloom. So turn off the news, go outside and smell the roses for a while.

On getting bad news

No one likes to get bad news. There are more jokes out there about good news vs. bad news. I am talking about getting bad medical news.

Some people never want to hear the bad news. I have a friend who when she received her breast cancer diagnosis, told her doctors she didn't want to know anything else - staging, tumor size, node involvement, nothing. It was her way of coping. A few years later she did get the details when she was ready for them.

It is my understanding that doctors often get this request - not to tell any bad news. But what is the definition of what is bad vs. what is good? There are more jokes about this as well (but I have chemobrain/RA fog and my brain can't remember them right now).

Its all relative. Take the example of a cancer patient who goes for a chest x-ray which shows a 2 cm tumor. To most people that would be bad news. But if the tumor used to be 4 cm and has shrunk as a result of treatment, 2 cm is good news.

Using the example in the article I referenced, what if the patient needs the bad news to make decisions regarding their treatment. Are they going to blindly follow the suggestions of their medical team? Some people do this anyway but wouldn't it be smarter to be fully informed?

Sometimes my life feels like it is a stream of bad medical news. This is why I have a therapist, well one of the many reasons. I am never the patient who has clear medical tests and they always want to be sure...

Its the coping with the bad news that is the hard part. This is probably why some people say they don't want the bad news. That way they don't have to cope. Ignorance can be bliss.

Doctor discussions

So you get some not so great news from your doctor. What is your first response? Are you sure those are my results? Is there any other way to check this? What next? I have learned the next thing to do (after surfing the internet and convincing myself my situation is terminal) is to pick up the phone and call the doctor back and rationally discuss the results after I have digested them.

I think when a doctor delivers the bad news, your brain hears one bad word and goes into overload and shuts down. Nothing registers and you blindly agree to whatever they say because you can't comprehend the impact. Often this news is delivered in an inconvenient place - on the phone while you are in a place you can't talk or have no reception, or when you are unexpectedly sitting in a little exam room dressed in a 'Dr Seymour Butz' gown and you are feeling a little exposed.

Based on few thousand experiences with this type of news, I have now learned to listen to what they tell me, get a copy of the pathology report and then research the crap out of it (and convince myself that its horrible) and stew over it for a few days and then call my doctor back to discuss it rationally and talk about options. This week I need to call my ankle doctor back to learn about options. With lymphedema I can't be on crutches so what's with the cast after surgery, can it be a walking cast? I need to get my two cents worth in. Also my goal is to lose some weight so how can I continue to be active while in a cast? (No I won't go for long walks in a walking cast but I certainly don't want to sit on my fat butt for the duration.)

Either way I will have a nice rational discussion ahead of time when I can talk and I have phone reception so I feel calm and in control.

More news

Okay, I am in a rut. Here's more news but none of it really surprised me:

- The US women's team won the beach volleyball gold medal and are undefeated in more than 100 matches. I can't remember the exact number. It seems the only thing to derail the pair will be their thoughts on retirement to have children. I heard earlier in the games, they might be considering it. I can understand it. It must be kind of boring to win all the time... Where's the challenge? Raising children? Now that could be a challenge.

- Russian troops don't seem to be leaving Georgia. Does that surprise anyone? Not really. Hmm... They said they would and signed an agreement. Maybe they just forgot to tell the troops to leave.

- China is on top of civil rights again. Two women, 77 and 79, are sentenced to a year of reeducation through labor (that's right, a labor camp) for APPLYING for a permit to protest eviction. Look at their picture - they really look like government security risks to me. Also, more foreign activitists are being held by the Chinese government.

- And illegal factory knockoffs seem to be flourishing in China. Not that this is any kind of surprise. But this is an example of how different news casts tell you different things. On the evening news last night was a big story on how the days of cheap labor in China are over and manufacturing is shifting to Vietnam as costs are going up. Hmmm... Perhaps some proactive anti-counterfeiting legislation and action in Vietnam could prevent the counterfeiting from gaining ground there.

Nothing like watching the news to keep your blood pressure up. Also, I can use it as a cover to hide my boring life. The only exciting thing yesterday, other than the fact that I worked a lot and the cat tried to escape but didn't, was I got my schedule of preoperative appointments yesterday. They are scheduled for Sept 3 and consist of 3 consecutive appointments - preadmission, physicians assistant, and then pre-op center. I will bring a book and a snack as it goes through lunch time and expect to be there for a couple hours. I did call to reschedule as the very next day I get to go back for my MRI which consists of a prep appointment to put in the IV and then the actual MRI so I will spend another couple of hours at the hospital. (Its not hard to schedule the MRI, its hard to schedule the physician's assistant.) Two days in a row. This will fill my social calendar for the week. Can't wait. I tried to reschedule to combine them into the same day but its not possible. Oh well. I can look for OMWAHs and rocket scientists again.