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.

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.

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.

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.

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.

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.

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.