Wednesday, April 1, 2015

Those other second opinions

So you get diagnosed with any not-so-fun ailment because you had some tests and the radiologists or pathologists read your results and told your doctor what the diagnosis was. However, as a new study points out, not all test results are black and white.

This new study found that pathologists only agreed 75% of the time when reviewing breast biopsy results, until they met and discussed the results. The study recommends in the end that perhaps a second opinion is warranted if the results are not clear cut. Sometimes your doctor can be the one who gives the second opinion but other times, you may need a second pathologist to review the results.

I had never thought about this ever. I know I have had x-rays, biopsies, scans, etc where the doctor has added comments to what the radiologist or pathologist has said. When I was diagnosed with rheumatoid, my rheumatologist waited to get back to me on the results of my x-rays because she wanted a specific radiologist to review them because they were very good at detecting RA in x-rays.

But I had never thought of asking if I could have a second pathologist or radiologist look at my biopsy or scan results. It would never have occurred to me. But it completely makes sense. If something is subjective at all, maybe more than one person should look at it. A new point to ponder. And this study also says to ask your insurance company if this is covered... which sounds like some might cover the second opinion.

Tuesday, March 31, 2015

Okay, I'm calling the doctor

I can't believe how crappy I fell still again. I spoke with my rheumatologist yesterday about some test results. She told me that based on the fact that there is lots of flu going around and I have been sick since Thursday, she thinks I should call my primary care and see if they think I should be tested for the flu or just go on Tamiflu. I refuse to go on another damn medication unless I really need it.

But honestly I can't continue to pretend I feel fine. I will go to the damn doctor. I feel awful. I didn't take a shower yesterday and am making myself take one before I go to the doctor. That may take me a bit.

I don't think I have a temperature. We had two thermometers here. I tried both yesterday and neither said I had a fever. But then one broke and the other one still says my temperature is 97.7. But when I go to Walgreens to pick up my other prescriptions that are waiting for me, I will get a new one and see what it says. I am sure the doctor will take my temperature too.

Yesterday I did get a lot done. I mean I watched three Lifetime movies, knitted, spackled the upstairs room we are about to paint, took care of a whole bunch of phone calls, and even made dinner (in the crockpot). Today I will be a lot less productive.

No I am not blogging about cancer related issues until I feel better and my brain starts working again.  I didn't watch the cancer movie on PBS last night because I was in bed. I might actually try to watch it today. When I do, I'll let you know what I think.

Monday, March 30, 2015

Its Movie Time!

Tonight is the premier of "Cancer: The Emperor of All Maladies" on PBS at 9 pm. The book was long and the movie actually is in three 2-hour parts airing through Wednesday night. I blogged about this a while back, I also read the book a couple of years ago. During the past week, I have also watched several trailers as well. Now the Tivo is set up to record it as it is on too late for me.

I am looking forward to this movie, or mini-series. But I do have a few reservations:
  • It was a long book and while it was fairly entertaining, it was long. It wasn't a book to sit down and read on the beach. It took some thinking and digesting. I would read a few chapters and ponder them for a few days or a week and then read more.
  • Although I reassured some in my other blog post, it does concern me that it is it is about cancer, which is not the most cheerful of topics. And sometimes I am just not in the mood to watch cancer-cancer-cancer.
  • Sometimes I have problems watching other people going through their cancer journeys. I have found some stories to be too drama filled, or sad, or have me wondering 'what were these people thinking?' when they or a family member were diagnosed with cancer.
  • If it is six hours of doctors talking about medical breakthroughs, I am not sure I will make it through. 
  • There is no way I am going to stay up (with a cold, on a weeknight, three nights in a row) until 11 pm.
So it may take  me a few days or a week or so to watch the entire six hours. I do hope to watch it and enjoy it. I will probably blog about it again when I am done.

Sunday, March 29, 2015

Once again, home with a cold

I never used to get colds. Now I get them, and much worse than before, all the time. A friend pointed out that this is the second for me this year. She might have missed one as well. That's being sick too often.

But my colds are just a side effect of RA treatment. Rheumatoid is an autoimmune disease which means your immune system attacks you. It is treated by suppressing your immune system, which makes you more susceptible dumbass colds.

Last weekend I went to visit my brother and he had a cold. I was really tired when I got home but wasn't sick. Tuesday I felt fine. My husband came home with a cold Tuesday night, slept 11 hours and felt fine on Wednesday morning. I felt fine on Wednesday so I had my methotrexate injection.

Thursday morning when I went to work, I felt iffy, which turned into really crappy by 11am and horrible by noon when I went home. My husband cooked dinner Thursday night. I pretended I felt better Friday and ran a couple errands but mostly stayed home, Yesterday I assumed I was better and ran another couple of errands and did some other stuff around the house.

This morning is another story. I can't talk. My brother told me I sound like the voice of something or other that I cant remember because I feel so crappy. I asked my husband not to make fun of my voice, again. He has fun with this with most colds. He also informed me that I should need to stay in bed today.

So now I am living on triaminc syrup, herbal tea, and chocolate ice cream until I get better. I have decided that chocolate ice cream has healing qualities.

I really just want to run away and join the circus be healthy so I can do things that are more fun that watching bad tv, knitting and sitting on the couch with the cat. Not that I don't like the cat, watching TV or knitting, but there are lots of other things I wouldn't mind doing instead.

Saturday, March 28, 2015

PCBs, Cancer and Schools

Back in early February, I blogged about being interviewed for an article on the PCB connection and cancer. Schools and other buildings built before 1979 often used PCBs in sealants and all sorts of other parts of the finishes.

Now the article is out and my part is not included which is no big deal. But the article provides a lot of good information on the problem with PCBs and the resulting health issues.

PCBs are a real problem in homes, schools, commercial and industrial buildings nationally. Many cancers are attributed to environmental factors and it would not surprise me if PCBs are one of them.

I went to one of the best school systems in the country but my elementary school was full of PCBs. Other than giving me a good education, did it give me bad health? That question cannot be answered and I cannot waste time on worrying about the causes and blame. I need to move forward but I hope the EPA and other entities take notice and work to remove them and other toxins from our lives.

Friday, March 27, 2015

Palliative care

Palliative care is not hospice care. It can be part of hospice care but in itself is separate. Now there is some research that palliative care should start at the point of an advanced stage cancer diagnosis and not later. The study focused on both the patient and the caregivers. Both of who handled everything better with it. Palliative care is pain and symptom relief - isn't that really important?

Personally I think palliative care should be part of any major medical diagnosis. I have been through too many medical issues not to appreciate the importance of it. I sometimes my consider my pain management doctor one of the most important people in my medical team. See Hollye's diagnosis story here where she talks about this more.

"Palliative care, a team-based approach in which a group of professionals – including doctors, nurses, social workers, psychiatrists, dieticians, and chaplains – focus on relieving the pain, anxiety, and stress that cancer can cause, can help control pain and improve quality of life in many situations."

At my breast cancer diagnosis, a social worker was involved in the initial team and was part of my care all during active treatment and somewhat afterwards. As I grew stronger, I was able to find support elsewhere that was more convenient and didn't require  yet another drive to the (damn) hospital.

"...your plan might include ways to manage pain, fatigue, loss of appetite, nausea, and insomnia. Your team also can provide help and resources for dealing with emotional, practical, and spiritual concerns."

Pain management is essential in well being. If you are in any kind of pain, whether post surgical or other causes, keeping it under control offers the patient an important respite - the ability to rest, eat, and move more easily.

While I might not need more palliative care right now, I will be sure to find it when I do.

Thursday, March 26, 2015

At least we are all here to talk about it

Yesterday afternoon I was at the gym. While changing, I started chatting with two other women in the locker room. One woman, A.,  I had spoken with before and knew she had breast cancer at one point but the other woman, B., I had never met. She told us openly that she had had breast cancer before as well.

A. had breast cancer 25 years ago and B. had had breast cancer 12 years ago, plus another cancer, and another scare about a third cancer. Between the three of us, we had all been through radiation. A. had a double mastectomy and B. a single. B. was also a therapist who had lead a breast cancer support group. As she is winding down her practice, she wants to restart her group again.

That lead to a big conversation with A. stating, "at least we are all here to talk about it". This is oh so very true. And I think we often forget it.

As we go through life and ride our medical roller coasters, we need to remind ourselves to take a step back every once in a while and say "I am still here to talk about it". I may bitch whine about my doctors, the state of my health, , aches and pains, and other annoyances, but I need to remember I'm still here.

Some people still consider cancer a death sentence. It is not as we are here to talk about it. And we must remember the ones who are not.

Wednesday, March 25, 2015

Doing my research

Every so often, I get the good idea to get my medical reports and review them myself. I do this because people tell me I should have the copies of my test results. I try to do what I am told, am often curious, and too impatient to wait for the doctor to tell me at our next visit.

Then I take my little reports home with me and try to decipher them. Why is my RBC below normal? Answer it has never recovered since chemo and it is just under normal. Some of the other tests I do not really understand. I do some research and end up at medical articles where I need to go to med school to be able to decipher.

At some point, I always say to myself "Why am I doing this anyway?" Sometimes I convince myself I have some deadly disease or ailment that will kill me without immediate treatment. Other times I convince myself that I really am healthy with just a few bad test results.

But my point is that I do my research and feel I should more frequently get my test results and monitor them better. For example my last blood test included my C-Reactive protein measurement. This is what tells the level of my rheumatoid and whether I am experiencing a flare up or not.

Unfortunately I don't think I have enough of my blood test results. But need to dig through my files to see what they have been in the past so I can continue to track them. Then I can continue to do research and see if I am going to live or not.

Or I can just continue to self diagnose myself into every ailment known to man.

Tuesday, March 24, 2015

Genetic mutations

As I hear the news that Angelina has had another surgery, this one to remove her ovaries and fallopian tubes, I ponder, what would I do? But as I listen to the doctors on TV talking about how she has reduced her risk of ovarian cancer significantly through this surgery, I am inclined to agree with her.

She has had a difficult medical journey with a BRCA 1 gene mutation and a strong family history of breast and ovarian cancer. I would think that anyone faced with this type of decision would agree that all need to make their own decisions but her decisions sound logical and she seems to be comfortable with them.

One thing that has always concerned me about genetic research is what if I had one? What would I do? I have no idea. At one point I was tested to see if I had a specific genetic mutation, one that is found in women who have both breast and thyroid cancers, and was told I didn't have it. Which was a big relief.

I mean if I had a genetic mutation, what would I do? First of all, genetic mutations can be inherited or can occur in individuals. Then you get a label - being a mutant - and you get stress. Now you have to make decisions on how to deal with it. There is often not much you can do about a mutation, other than watchful waiting.

Some of them, like BRCA, you can have surgeries or take medications and reduce your risk of health issues. Many others, there is much less you can do. You just get more medical visits and follow ups to test for issues. I think you would be stuck, waiting for the inevitable to happen. Not fun.

You may call me a weinie but I have never had any desire to find out what mutations I might have. I know I seem to have been dealt the unlucky hand in the health lottery, but I do not want to know if more ailments might be in store for me. I prefer to enjoy my life as it is now instead of stewing over what might be. I know what my life is now but I have no way of knowing what might be.

Monday, March 23, 2015

What a long strange trip...

So I was out of town for a long weekend which is why I didn't blog. Other than being really tired from driving about 750 miles in the last four days - half today and half on Friday - and being exposed to my brother's evil cold, I am fine.

I spent 20 minutes on hold on my drive out on Friday with the  hospital trying to cancel an unnecessary doctor appointment so my frustration level with the medical world is fine as well.

I did get to spend some quality time with my nieces and nephews which was a lot of fun. We also had an early celebration for my brother's birthday. And it snowed both days. How lovely. The grip of winter is all around us.

I am exhausted which means I will go to bed early and get lots of rest so I can return to the world tomorrow. And I might even write a real blog post as well.

Unless I get my brother's evil cold, in which case I will send him a lump of coal for his birthday, and end up staying in bed for a few days.

Friday, March 20, 2015

Some portions normal

Yesterday I had one of those oh-so-fun medical adventures at the hospital to follow up on some symptoms. I was chatting with the technician during the test and at the end, I asked her if I was normal (for the test results) and she said 'some of it was normal'. What that means is that the doctor has to go read it and figure out what parts of it were normal, what was due to previous known issues and what is a concern.

For once, can't I just be normal and have normal test results? I think I would need to be healthy for that.

But anyway the doctor should have the results today and if I don't hear from her by next week I can call and get them. But I can also just swing by the medical records department and pick up a copy of the results next week. (I am a big fan of the medical records department since I have learned that I can go there at any time and get test results or appointment notes whenever I want.)

[I'll provide more information on the actual test and results sometime later when I know more. And its nothing that significant.}

Thursday, March 19, 2015

Will biotech research cuts hurt advancement?

Around the world, biotech and big pharma are trying to manage their costs and some are beginning to cut research jobs, which can slow finding new treatments. This is a normal problem for any business, if you have to cut back, some things just don't happen.

When I first joined the business world, I worked for a company that was facing a round of layoffs. To this day, I clearly remember a co-worker saying to me "they can't lay me off as they won't have someone to do my job function". Well, guess what? The company decided not to have that job function any more and she was let go.

Businesses need to change and evolve to prosper. If they do not, they will no longer be in business.

I agree that biotech and big pharma need to make cuts and adjustments to continue to prosper. But they also need to take a look at their profits and their pricing. I honestly believe that biotech and big pharma need to review their entire financial model to adapt to the changing economy.

The insurance and medical care industries are reeling from the huge burden of costs from newly developed drugs and is really struggling to pay the bills. And the pharma companies are worth billions as the patients go bankrupt.

Wednesday, March 18, 2015

Are we looking for the wrong thing?

As all cancer patients are told, after treatment you will find your 'new normal'. Basically you get to go back to being yourself again and regaining your life. But it never seems to happen.

A friend sent me this article from the New York Times on a young woman, after cancer, is looking for her old self, and being lost in transition from cancer land to her new self.

It made me think (a dangerous proposition at times). What if you are a non cancer (or non any major ailment) person, you go through life and you evolve slowly and your life changes, and its no big deal, its normal. Maybe you grow apart from some friends, gain new ones; start yoga and stop running; quit eating red meat and white sugar in order to be healthier; redecorate your house, or kept trying to lose those same damn 10 pounds. These changes happen over time but if you look at yourself from last year to this year, have you made changes? Probably. And unless you stop and think about it, you may not notice them.

With cancer (or insert any life changing diagnosis), you are yanked from your nice calm life and shifted into cancerland, riding the cancer roller coaster while holding hands with your friends, family, and oncology team who want to know about every sniffle. Then poof, you are pronounced 'cured',  get a little certificate from your chemo nurses, and your doctors don't want to see you for six months, instead of every week or month.

You are supposed to find your new normal by tomorrow morning and move on with your life, go back to work full time and be healthy, instantly.

Instead, you stumble around and wonder what a new normal is. You might be depressed, anxious, and still clinging to the cancer roller coaster at every ache and pain. Slowly you stabilize, still gasping from the whirlwind you went through for the past year.

You have lost some friends or even family who went running from the word cancer, in case it was contagious, but you gained some new ones. You got some new clothes, your work schedule changed, you bought yourself a present for surviving cancer treatment (I got myself a new watch), and you are still trying to lose the same damn 20 lbs (10 from before cancer and 10 from chemo).

And what if this is the new normal? What if its harder to find because you didn't evolve slowly but were yanked from your life to cancerland and then thrown back to your life? You have to pick away at the layers of changes to see what you like and don't like and try to get a handle on everything. Some of the changes that happened may not be the ones we want to keep but we have to learn to accept them.

We can never go back to the way we were, no matter how much we try. Who was it that wrote 'you can't go home again'? Its true, especially with cancer, we can't go home again, no matter how much we try.

Tuesday, March 17, 2015

What are we whining about?

Today is St Patrick's Day. Although I have some Irish heritage somewhere, we will have corned beef for dinner tonight appropriately. But more importantly there are three more days until Spring. We have had a bit of snow here. This graph shows the snow in Boston. But since we are a few miles west/inland, we probably got a bit more than there.

Around here we are all whining about the snow because we are so sick of it. The most amazing part is how much has already melted and how much has not yet melted. I think we have lost a few shrubs here. I only care about the ones I planted, not the ones which came with the house. Maybe now I can get rid of these.

But now all I can do is watch and wait. I am physically unable do any plant rescues because all that does is make my body hurt. I tried to dig out some of the box wood by the front door. It is all bent over to the ground and clearly some branches are broken. Maybe it will be toast and I can grow roses instead (that would make my day).

Yesterday we had enough melting so I can see the ground near the driveway but nothing green growing yet. We should have crocuses and daffodils by now.

Monday, March 16, 2015

Would you expect to get good medical advice in a tweet?

I read this article, The Doctor Will Tweet You Now, on Curetoday.com and am not sure how I feel about it. I think its great that there are doctors on Twitter and other social media and sharing their knowledge and helping others. However, they cannot provide medical advice for you as the article states.


The focus of the article is that Dr. Attai, and two other doctors, who run an online support group on twitter #BSCN on Monday nights.Well that's great. How would it help me? Provide information on what I should ask my doctor and answer general treatment questions. I have been in support groups where a doctor's input would be appreciated from time to time.

However I would never expect to be diagnosed and treated by a doctor through a tweet. Even if I tweeted a video link to show what I was talking about, I would not accept their comments as more than advice on what to ask my doctor.

So why do they think its so great that they tweet etc? I'm just not sure. I am having a real problem with this and doubt I would ever use it.

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