Friday, February 27, 2015

Insensitivity

Some days I am really amazed at the heights (or lows) of people's insensitivity and assumptions. I met a nurse last week who was obviously very pregnant. She was very happy to talk about being pregnant, having a baby, and what a wonderful experience it all was.

Then she looked at me and said "I think every woman should experience having a baby" and paused waiting for me to respond. I said "I wouldn't know, I don't have any children." Then she asked me why I didn't have any. I was a bit flabbergasted.

This is right up there with people asking me why I have had cancer twice. Because the stars just aligned that way!

Do you mind? Really!

Thursday, February 26, 2015

Issue #937.2a that they never tell you about having breast cancer.


There are so many things they don't tell you about having breast cancer. Here's is another one. You may not be able to wear your wedding ring. Really. My cancer was on my left, I had a bad node that lead to a axillary node dissection, which lead to lymphedema issues.

I woke up in the middle of the night last night and noticed my left arm was puffy. This morning I spent some time and got my wedding and engagement rings off. Now the puffiness is subsiding. I have done some of the stupid lymphedema exercises. I will wear my sleeve today.

But my rings are on the pinky finger of my right hand. They feel like they might fall off. Damn. I want to wear them on the ring finger of my left hand and can't.

Cancer sneaks into your life in little ways. I wish they told us about all the issues before hand.

Wednesday, February 25, 2015

A nice doctor appointment

Yesterday I met with my endocrinologist, a/k/a the thyroid cancer doctor. Last year was a horrendous experience.

I was very pleased on arrival to note that the idiot nurses manning the front desk at previous visits were no longer there. They forgot me last year, which added to my stress. I used to learn a lot about their personal lives as they chatted continuously at the desk instead of managing the patients. But this year, there were new nurses and they were nice. And they did not forget me.

I met with the doctor and we had a nice conversation. My numbers are where they are supposed to be, one is a little high which means my dose is too low (its backwards with thyroid numbers - more medication to reduce numbers) so my meds are tweaked. Which means more blood work in eight weeks and six months.

Next year I will see her again, unless there are problems with my new medication level and have an ultrasound to make sure there are no cancer cooties lurking around.

It was a nice doctor appointment, free of stress and all that. I can live with that. After cancer, all we can hope for is that the cancer cooties do not return.

Tuesday, February 24, 2015

I need a change

Things are starting to get to me this winter. Why? We have been living in the arctic tundra for weeks. I am starting to go crazy. I think. Maybe its just a case of cabin fever.

I am not asking for much. These are the things I want:
  • I want to be able to wear shoes. Not boots. I have been wearing boots for weeks. I miss my shoes. Its been too cold and snowy for shoes. This morning was 4 below without windchill.
  • I want to be able to walk outside. Without climbing over snow drifts or wearing boots (see above). A nice stroll without frostbite concerns would be nice.
  • I want to be able to go outside and play in the garden, look at new things growing, and see what survived the winter. But the snow needs to start melting. 24 days until spring, but who's counting?
  • I want one month without a single doctor appointment. Its been a while since I had a break. I have one today and then another next week I think.
  • I want to feel better - no aches and pains. As if.
Maybe a vacation would be nice. But that's not happening for a bit. However in the meantime, I can plan some trips away. I'm up to five so far this year but not for a while.

I think this winter is an example of how people with chronic illnesses can't just run out the door and go have fun. I have concerns about falling on ice - that has happened before and injuries have resulted. I have concerns about getting cold - my fingers turn white with cold easily these days. And I'm sick of staying inside.

At least the snow drift outside the living room got small enough yesterday that the sun actually shined in the front window and the cat took a little nap in it.

Monday, February 23, 2015

Forward thinking

After getting eight feet of snow since January 25 (less than a month ago), I am trying to be forward thinking. We are not due to get a blizzard this week - which is fortunate because we have no more places to put the snow. The city of Boston called "Uncle" a while back. Today we woke up to 29 degrees. But nevertheless it will be around 5 degrees overnight tonight.

I look at my spring gardening catalogs and think about what to plant in the garden this year. I have no hope of planting anything soon as this is my front walk.


This would be a bit better.

(This is not my front walk, a cousin sent me the picture.)

But I digress. I am trying to be forward thinking. But I have a real  problem. The *(#&%$@&^ hospital has decided that it would be better to send an individual notice for each medical appointment a week or two before it, instead of a list of all appointments.

Look, I have chemobrain, fibro fog and general forgetfulness. I need you to send me long lists of appointments so I can keep track of them, especially when you change them on me. If I knew who to complain to on this I would.

But since I do have a doctor appointment tomorrow I will be sure to ask for an updated list so I can remember.

Sunday, February 22, 2015

Call Me Appalled!

Yesterday was a long complicated day. It ended with me leaving the emergency room of a local hospital I rarely go to around 7pm. (I am fine, a friend needed some stitches). We were there for several hours and saw people coming and going.

As I was leaving, I noticed a woman taking her husband back to the car in a wheelchair. I saw them there when we got there several hours before. Her husband was groaning and in a lot of pain. She was steaming mad. And I don't blame her.

After they were there for hours, they were heading to another hospital as they were just told that hospital does not do surgery on weekends. Could you imagine? Why couldn't they have told them earlier?

I realize it would probably be a doctor to make the decision that he needed surgery but couldn't the triage nurse do anything about it so they were seen sooner before sitting there in obvious pain? I am appalled. I did recommend another hospital to her where I know they do surgery on weekends.

Saturday, February 21, 2015

Over Doing Things

Have you seen the ad on TV for some fibromyalgia drug that shows a woman standing in her kitchen with an overflowing sink of dirty dishes? She says she doesn't have the energy to take care of everything because of the pain and fatigue caused by fibro. And then she started taking this amazing medication and is able to again (followed by a million potential side effects).

That is sort of me. I mean I have fibromyalgia and the fatigue and insomnia that go along with it. And I am on one of the drugs with the fancy ad campaigns. But I deal more and more with the fatigue and insomnia and pain. And I am on additional medications to take care of the side effects.

And then what do I do? I keep on volunteering to help other organizations. I guess I have a problem saying no. And then I have no time to relax and take care of the fatigue and pain for a bit. So I end up overdoing things and am totally fatigued to a point where I feel like I am too tired to sleep.

But now I have to work on the word no. My health has made it apparent that I can't keep volunteering and have to learn how to tell people "I'm sorry but I am not able to help you as I previously thought".

But to be perfectly honest, I am really sick of my body preventing me from doing the things that I want to do. Its a huge frustration for me. I want to continue to do things and my body keeps letting me down. If I had my way I would never had cancer and any of these ailments at all. But since that is not to be, I will suck it up and keep on going. And work on that word 'no'.

Friday, February 20, 2015

Breaking in the team

The team of doctors that is. I have a select group of doctors. Some of them were carefully selected by me, the ones I don't like, don't last. When a doctor retires or moves to another medical facility, I ask for references to find ones I like. My latest rule is 'young doctors are better'. This is because they are less likely to retire on me so chances are I am in it for the long haul with them.

Breaking in a new doctor is a pain. They have no idea of my health until they read my file. I am 'fun' to treat. I am finding more and more allergies to medications and I am allergic to the two standards for treating reactions - prednisone and benadryl.

But I digress. At the end of my active breast cancer treatment, I made a point to find a therapist so I wouldn't go succumb to cancer PTSD again. Dr H is a great therapist. We had a lot in common - arthritis and breast cancer. And then she retired! Of all the nerve! Seriously she wanted to do something different with her life and travel more, work less.

She let me know last fall that she was leaving at the end of December. We discussed my options several times. She is still practicing a few Mondays each month but that would only prolong the issue - how much longer will she still practice at all?

So I met with a new therapist in January. That was our 'get to know you' session. We have decided I will try this for a few months and see how it goes. An issue the she brought up that I hadn't even considered is that she is fairly young - maybe early 30s. I didn't really think of that. Maybe its a concern for her. I don't think I am mentally that old. But my medical records belie that.

Today I go see her again. I will see how she handles my issues. If not, I will see about finding another. But I hope we can work things out.

Thursday, February 19, 2015

Help I need a nap!

Yesterday I went to work and by mid-day I could barely keep my eyes open. I came home and went to bed at 230pm, after struggling to stay awake as I drove. I woke up just after 5 when my husband informed me I had a phone call  - a scheduled call for some volunteer work.

Then I went back to bed about 9pm (which is normal for me these days) and slept all night. Today I am headed back to work but feel like I will probably need a nap again. I do need to get to the gym too. I skipped it yesterday because I thought I might fall off the bike or elliptical if I fell asleep.

I have been too busy recently (even with all the snow days) and just feel behind on my sleep. Tomorrow I don't have to be anywhere until 10am. So I could sleep in a bit. Saturday I can sleep late if I want but have to be ready to leave by noon. But Sunday? I can sleep as late as I want. This could be noon.

And the cause of this need to sleep? How about fibromyalgia and RA? You know after a bad case of the flu you just feel wiped out and want to sleep a lot? That's me.


Wednesday, February 18, 2015

Withheld information

A few times in my life, I have had people say me 'we didn't want to tell you but so-and-so was diagnosed with cancer, we thought it might upset you'. I hate this. It goes back to my request not to treat me any different because of my health. Unless you want to shower me with money.

I am capable of handling news about other people diagnosed with cancer. I live in cancerland where everyone has cancer. Its not a nice thing to hear about someone getting cancer but believe me I can handle it. The only time it would upset me seriously would be if it was me again. And it really pisses me off when information is withheld.

Just a little rant today. Its been on my mind recently.

Separately I just learned yesterday that an old friend from childhood who lived across the street was diagnosed with breast cancer and died 8 weeks later. Her cancer was hidden behind a benign breast condition so it was not diagnosed until too late. This makes me sad that this could happen in this day and age of modern medicine. She was 54.

Tuesday, February 17, 2015

Making medical decisions

When you get an icky medical diagnosis, what do you do? I don't mean something like a broken bone, I mean something where the doctor gives you your options and recommendations and tells you to take some time and give it some thought.

Do you seek advice from others, discuss it with your spouse and family members, or research and make your own decision? I probably do a combination of the last two - I will do some research and talk to my husband. And I make sure its my decision and not what anyone else thinks - especially their recommendation from their cousin's hairdresser's neighbor's mother in law's dogwalker.

I realize there may be times when I am not able to make the decisions - if I am unconscious or something. This is why my husband knows what I want to do.

A recent study (because we need more studies) found that doctor's see family disagreement and patient denial as barriers to decisions about care. I make a  point of avoiding the first part by making my own decisions.

I know I have gone into denial when faced with some diagnoses. As Adam says in the movie 50/50, 'but I recycle!'. I think we all go into denial when faced with trauma. "Did I really miss that stop sign?".

Denial is a normal reaction. But if it lasts too long, it really can impede medical decisions - no I am not sick! I think doctors realize this and are trained to help patient's through it. But when family disagreements get in there, the doctors shouldn't have to convince an entire clan of people as to what is best.

I think we need to prepare for times like this by keeping our selected family members informed of our decision thought process. What is it? "An ounce of prevention is worth a pound of cure?"

Monday, February 16, 2015

Debating the right to die at home

I am sure you have heard of the story of Brittany Maynard who died  with help from a prescription at home after a horrible cancer diagnosis. The real story includes he fact that she had to move from California to Oregon to do this.

Now there is another woman who is suing California for the right to die at home, and not have to move out of state to do so.

I strongly believe in the right to die at home, on my own schedule. I do not want to die full of tubes in some uncomfortable, impersonal hospital bed. When I get to the bitter end, I want to be home with a few selected people. 

If I get a diagnosis like Mrs. Maynard did, I would definitely want to be able to choose when I die and have the option to make that decision.

But I can understand why others do not share the same beliefs.  There are religions who believe in the sanctity of human life. There are others who would not want to because they want their doctors to keep trying to save them.

All I want is the right to make the decision by myself. If my health took a horrible turn from which there is no treatment, I would want to be able to consult with a doctor and a psychiatrist to make the decision and get the prescription to make the decision on when. I would not want to have to file a lawsuit to be able to do so.

It should be a matter of choice, not a legal issue.

Sunday, February 15, 2015

Managing prescriptions and insurers

Every Saturday afternoon I have a job. I refill both our prescription boxes for the week. It often slides to Sunday morning. But it takes a good 20 minutes or so and I have to keep the cat away or he walks over it all and dumps everything out. I pull out all the pill bottles and count them and organize them. 1 prescription, 2 vitamins, and 2 OTC meds for my husband. 2 cancer prescriptions, 1 fibromyalgia prescription, 2 RA prescriptions, 1 back pain prescription, 5 vitamins for me, and 1 OTC med, I think, for me. But I could be wrong. It takes a little organization as well.

This week I screwed up. Big time.

First of all I should have refilled my husband's prescription last week. I didn't. Today is Sunday. He took his pills today and we have exactly one day's more of pills. That gets us through tomorrow. Then we have a secret back up set of pills for him and that's it.

Tomorrow is a holiday and I will try to get a refill for him. But I don't know if his doctor will be available and can fill it - usually they want 48 hours. And it has been requalified by the hospital (probably by a law) that a prescription can only be written by the prescriber and not an on-call doctor and must be picked up in person, not mailed or faxed. So it may be Tuesday. And it has to be picked up at the office where his doctor moved to which is 15 miles away.

Damn.

Then I went to refill two of my prescriptions at the local pharmacy. They can only fill one because the other one now requires preauthorization which needs to be done annually. Damn, again. But I have a two week cushion left on that one so it should be okay.

Finally, I went to refill two prescriptions by mail order. Both are expired. Damn, again, again. But I also have a cushion on them because they are mail order.

So tomorrow I will call around and get all refilled. What a pain!

I spend a lot of time managing prescriptions. A few weeks I saw my rheumatologist and she tweaked some of my prescriptions and sent in new ones. One of the medications can no longer be filled at the local pharmacy for about $1/month but has been reclassified as a 'specialty' medication and has to be filled by the mail order specialty pharmacy. Each time it is filled, it will cost $35/month. After 3 months, I can switch to a 90 day supply for the price of $80 for three months.

Right now the insurers and my back pain are winning. And the blizzard - we woke up to another 15"+ of winter wonderland outside.

Saturday, February 14, 2015

Life's Changes

The road of life is a bumpy one with changes as we go our different ways. As children we wonder where we will end up - do we want to be a fireman, a cowboy, a doctor, a princess? As we grow, we find our likes and dislikes and start making our choices. After we end our educations, we are ready to start out on our own with new adventures again and again. Later we settle down and start making decisions on where to live and what we want to do with ourselves. Eventually we decide to retire and live out our golden years. Along the way, we make our decisions and decide what we want to do, where we want to work, and who are friends are.

Usually this works, except when cancer or other health issues screw it up.

I read Scorchy's blog post today, Past Tense, on how her health, or lack of it, is making her to make decisions she does not want to do. She had to leave her beloved job, ending her career because she wasn't physically able to continue it.

I thought about it, my health has also forced me to make changes I did not want. I was laid off two weeks before my breast cancer diagnosis. I was so smart, I thought I could go through surgery and chemo will job hunting. I turned down job interviews because I was too sick to go. Eventually I gave up and took a part time, fill in job until I was back on my feet. After treatment I planned on getting a full time job. After treatment ended, I needed gall bladder surgery. Then my back started giving me problems.

I never got that full time job, I stayed working at part time jobs. My health never allowed me to return full time. I did have a career. I had a nice job working in Boston. I left it so I could work closer to home after I got married. So I got a suburbs job and got laid off. Then cancer, blah, blah, blah.

But I don't think I have ever really gotten over ending my career due to my health. I am barely able to work 15 hours each week these days. I battle symptoms from RA, fibromyalgia, and my back on a daily basis. Some days I get out of bed and I have to wait a while until I am able to walk easily.

I think I need to learn to cope with how my career ended too soon. Its not what I wanted. I am not  ready for retirement but I will never be able to work full time again.

Friday, February 13, 2015

Young adults and cancer

I can relate to young adults with cancer. I wish the organizations that exist now existed in the early 1980s. But since there was not internet and we paid for long distance calls, it would probably have been by paper mail. And all the support groups were full of  'old people'.

I saw this article in a recent email from Cure Magazine (and I'll say it again, if you have cancer and do not read this, you are really missing out on a great resource) and of course I had to read it. Its a review for a new book by Dr. Anne Katz called "This Should Not Be Happening: Young Adults with Cancer".

In general I like the idea of this book. From what the review says it touches on many of the areas that are key for young adults with cancer - sexuality, fertility, and body image - but I have a concern.

There is no evidence given that she was ever a young adult with cancer. I am a firm believer in 'if you haven't walked the walk, you cannot talk the talk'. Now I am sure she wouldn't publish her medical history on her website, but it would be nice to know if she could relate from the first person point of view.

So I am going to put it on my reading list but am put off by this one little issue.

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