Being an adult or cleaning the oven

We all have our quirks I know. I just have a fear that the stove will blow up if I clean the oven. The oven gets so hot and smells. I won't run the self cleaning feature overnight or leave the house while its running.

I have memories from my childhood of my mother cleaning the oven with those really nasty toxic chemicals. They smelled, they foamed, and then you were supposed to just wipe out the oven - using a sponge which would be immediately thrown away and wearing giant yellow gloves because it was so nasty.

After college, I lived in several different apartments with room mates and occasionally would break down and clean the oven. None of us ever wanted to. I mean, its probably one of the least fun tasks on the planet. I have a friend who jokes that instead of cleaning the oven, she moves - even if it means buying a new house, or a new stove.

I learned to compromise. I just kept a piece of foil in the bottom of the oven and another on the lower rack to catch all the spills. Then with an occasional wiping out the bottom and cleaning the window periodically, I was good to go for years.

Then along came self cleaning ovens. They were a huge advantage. You could skip the chemicals and let the self cleaning part work all by itself. But its smells like something is burning and might set off the smoke alarm. And I am never comfortable.

I kept using foil. Its worked just fine. I never clean the oven. I hate using the self cleaning feature, I always feel like it will catch on fire or something.

We are moving and we need to leave the house 'broom clean'. I have accepted that this means the oven needs to be clean. So this morning, I woke up and figured out how to self clean our seven year old oven. It took me a minute but now its cleaning itself right now. But it smells like a burned out potato skin and the house is filling with smoke.

But I am being an adult and facing my fears that the house will not burn down. We all have our quirks. And I will call my friend later today and tell her I finally cleaned the oven, because we are moving.

That cancer part that never goes away

Ask anyone with cancer and they will tell you the cancer part never really ever goes away. You can think, and dream, and ponder, and hope, and do anything you want. You get slashed, burned, and poisoned (surgery, radiation, and chemo) and deal with baldness, nausea, fatigue, weight gain, and more. You get countless scans, blood tests, and millions of doctors.

But it still hangs there in the background to wake you up in the middle of the night with the little 'what ifs'. Those cause the stress that does all sorts of bad things to your body (that might even cause the cancer to come back). And might cause overeating which causes weight gain (which might also cause the cancer to come back.)

You can also go to therapists and support groups and they give you advice on how to deal with your emotions, your feelings, and your fears. They have such great suggestions (my personal favorite is when they told me to avoid fatigue by putting on a terry cloth robe instead of toweling off to save the extra exertion.)

My cynical side often comes out when I am dealing with the cancer things. I am also waiting for that supposed cure that is getting closer and closer every day.

A (Short but) Very Stressful Trip on the Cancer Rollercoaster

Yesterday I went to have my annual check up with endocrinologist. When I first saw her about five years ago, I was sent for a baseline thyroid ultrasound because I hadn't had either an ultrasound ever or an endocrinologist in a very long time (decades?). Big surprise there when they found a 'something' in the thyroid bed where the thyroid used to be but wasn't supposed to be anything.

We started following it with ultrasounds to see what it was. It was clearly in the evil category of 'big enough to see but too small to do anything about'. So six month and then, as its stability became established, annual ultrasounds were the result.

I ran into friends entering the hospital and then was a little late for the ultrasound but still had to wait a few minutes. I didn't have any great expectations of issues with the ultrasound. They finally called me and I went in for my turn. It met my expectations of no problems. I went on to my endocrinologist appointment to get the results and talk about my thyroid or lack of.

While in the waiting room, I ran into another friend (see what happens when you are a frequent patient - your social life happens at the hospital?) and we were chatting away. Then a doctor showed up in scrubs and asked the front desk attendant for me because of the innocuous reason that 'the doctor needed more pictures'.

My stress level grew. Immensely. No cancer patients ever want to hear that. They sent me back to the ultrasound waiting room for a few minutes and my stress level continued to grow. I was the only one in the waiting room - me and my mind which quickly goes down that evil little road to hell.

After a few minutes they called me in again. Another tech started another ultrasound and would only tell me that 'the doctor had requested more pictures'. After a few minutes of clicking away on her screen and squishing the side of my neck with the stupid wand thing, she left to check with the doctor to make sure they had enough pictures.

My stress level grew some more. I was in tears.

The attendant came back with the supervisor/instructor. They resumed the ultrasound and whispered away while clicking and and pointing at the screen. I was more stressed.

Finally they decided they had enough pictures and sent me and my kleenex back to endocrinology where I was greeted with 'there you are - we called you and you weren't here even though you had checked in'. I was told to take a seat, no they would take me, not sit, no go in. Eventually they said go in. The nurse said she had forgotten I was sent back over to ultrasound....

She stuck me in an exam room and attempted to take my blood pressure. I have no idea what it was but I bet it was a bit high. I stressed.

Then the doctor came in and apologized and said everything is fine. She told me to take a few deep breaths. My stress level started to go down. She told me she could not imagine what I went through as even she was very surprised to learn that I was sent back to ultrasound. She wasn't the doctor who wanted more images, it was the radiologist so she was surprised as well. My stress level went down so more.

What happened is that the evil little something they were following was not found in the first ultrasound. The tech measured something different which was a completely different size. They had to go back and find what the first tech had measured and then to decide that the evil something was no longer there. Great big sigh of relief. That was about 45 minutes of sheer hell on my part. Then I went to the gym to finish destressing.

I do not blame the techs as they were doing their job and I do not expect them to tell me what they see as the doctor needs to put it in context. I'm just glad I had the results of the ultrasound about 10 minutes after it ended.

This is a day in the life of a cancer patient. Every test no matter the expectations can quickly go to hell in a hand basket. If you haven't walked the walk, you have no idea what its like.

That was a bad day!

I don't like needles. You might have heard this from me before. I was very clear with my oncologist when I was diagnosed that it was not an option for me to self inject. Ever. Last week I was told that my RA is not responding to oral treatment so I need to switch to injections. I was a bit stressed.

I had no idea how stressed I was. Tuesday night I took an ativan so that I would be able to sleep and reduce some stress. Yesterday morning we had the teaching lesson with the nurse to learn how to self inject.

I woke up with hives, a knot in my stomach, and extreme stress. Hives? That was a bit extreme. I have only had hives from allergic reactions before. I might have been a bit whiney as well. Only a slim possibility of that. I even took  half an ativan to help me cope.

My husband went with me as he was the mere 'learnee' and I was the mere patient in this. We got there on time and had to sit in the waiting room where my husband's hand got a bit squished (only a tiny bit). And we waited. So I stressed some more. 

Finally the nurse came to get us. I was very nervous and told the nurse - there is no point in being nervous if you can't tell everyone about it. She said it was good to be nervous as that meant I cared about my health and was taking it seriously which is a good thing. It may have been a good thing but it didn't make it easier.

My husband learned out to put on the gloves, swab off my skin, fill the needle, etc. I got to ask stupid questions and be an idiot because I was nervous. I even cowered when the put the fake fat pad against my arm for my husband to pretend to inject me. I cowered again when he really did inject me.

There was a little pinch and it did burn a little. But I survived. I think.

I left to go to work and my husband went to his other doctor appointment. My stomach started to unclench. My hives itched a little less. But I felt better. It was over. Until next week when we go through it again with out a nurse to help. Crap.

A needle free future

I am elated, no, overjoyed, on cloud nine, jumping up and down with joy (as much as I can jump up and down these days) at this news. Companies are now trying to figure out ways to deliver drugs WITHOUT needles.

I hate needles. I see no need for news programs and commercials to show people getting shots. If I have to have a needle near my body, I tell the doctors and nurses that I hate needles and can't look at them. When I had injections under my kneecap (I get chills up and down my spine just writing that), they were very good at distracting me.

I have a coworker who is so petrified of needles he gets freaked out by doctor appointments. I am not that bad but still me and needles do not get a long. Every time I need blood work (every two months now) I tell them I hate needles,  have tiny veins, and they have to use my right arm which has the tiniest veins so they use little kid needles on me. Which still pinch!

When I started chemotherapy I told my oncologist that there would never be a day where I would inject myself with anything. Then with rheumatoid, my doctor muttered something about injectable options and I let her know my opinion of needles. I am still on oral medications but my RA is not under control so that may need to change. (My husband has since agreed he would give me the injections if it came down to it.)

When our cat had diabetes, I refused to learn how to give the injections. Then one day my husband was sick and slept through the injection time so I had to give the cat the injections. He never even  felt them but it was traumatic for me.

Now these brilliant, brilliant people are coming up with ways to deliver drugs orally instead of through injection. It involves capsules, micropatches and all sorts of technical things that sound expensive but they do not include needles so I am happy. Its just two or three years away from clinical trials.... So I will try to be the patient patient for now.

Well they scared the crap out of us

When women are diagnosed with breast cancer, they are brainwashed scared into thinking that they will get lymphedema and  end up with an arm the size of an elephants. If they have an axillary node dissection where a dozen or more lymph nodes are removed in the hunt for evil cancer cooties, they are given a list of rules for the rest of their life:

• do these stupid wall climbing exercises to make sure your arm doesn't swell up
• never allow anyone to take your blood pressure or stick any needles in that arm 
• never carry a shoulder bag or any bag on that arm that might compromise your circulation
• never lift anything heavy
• never injure your arm or fall on it.
• at any signs of swelling, contact your doctor.

And these are for the rest of your life.

Now they come out with a study which says "Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds Risk". Well they scared the crap out of this with the 'rules' they gave us.  I even had a special session with a nurse to review everything about lymphedema. 

I was fine for about a year and a half and fell on my arm. Now I wear a stupid sleeve when I work out. I can't have needles or blood pressure taken on my left side. If I wear a watch on my left wrist, no matter how loosely, my arm feels heavy and swollen for days after.
 
So maybe they scared me, but they were right. Crap.

PTSD and cancer diagnoses

I honestly do not believe they needed a study for this one but did so now they can say its true. A recent study examined women diagnosed with breast cancer from 2006-2010 and found that 23% reported PTSD symptoms shortly after diagnosis. This rate was higher for Black, Asian  or under 50 women and apparently the symptoms decline over time.

My comments (because I had to have an opinion) are that:

• I do not think it is isolated to breast cancer patients. I think its probably across all cancer diagnoses and they just have not done a study yet to prove it.
• I think the people who say they did not have PTSD were still stressed. A cancer diagnosis is not something you can bury inside you and not react. 
• Although the symptoms may fade over time, the person with the diagnosis has to learn to cope with the ongoing fears of cancer's return for life.

Ask anyone who has had a cancer diagnosis and talk to them about the stress of diagnosis and fear of recurrence or new diagnosis, and they can tell you without the need for a study. 

Bias against disease

This article reminds me of the bias that exists with a disease diagnosis. How often do we hear 'Did you hear Susie's brother has cancer?' 'How sad. He was such a nice man.' Instantly a diagnosis becomes a mental death. The patient is written off and sent to some other world. When their death finally occurs, whether in one year or fifty years, you hear 'he was such a fighter, he struggled so long and hard'. But I don't think these people actually knew the patient and what he went through as they wrote him off at the diagnosis.

Leper colonies were the previous centuries way of creating bias and discrimination against those with a disease that was understood and feared. Now we don't physically  put people in hidden colonies as much. (I believe still in parts of Asia those with an HIV diagnosis are sent to secret villages.) But we still mentally write people off when we hear such a bad thing. No they didn't move to Australia, they still live down the street and go to the doctor a lot.

So I am very happy to see the kind of support people who get it do know. I 'know' Michelle from her blog which was recently renamed 'Mission Remission'. She is a young mother who was diagnosed with colon cancer in 2008 and now is going through a recurrence. She has amazing support. In addition to her blog she has a fan page on Facebook with hundreds of supporters who help her with donations to help her and her family and support her through this latest cancer adventure. This is a good story.

However, then I read the story of an Iranian woman who is trying to get permanent residency in Canada. She has been there on a student visa since 2005 and trying to get the residency visa. However, since her application she has been diagnosed with breast cancer. So now the concern is that a return of her breast cancer would cause a strain on the health care system. (First of all who knew that you need a medical exam to get permanent residency in Canada - how's that for discrimination?) You can't live there if you are sick and might strain the health care system. This woman is a victim of circumstance. I am sure this would not be an issue if she did not have a breast cancer diagnosis.

Phooey to the Canadian government on this one. This is bias. Along with a bit of stupidity as well. One case of breast cancer is not going to destroy the Canadian health care system and if it is, then the healthcare system is in very poor condition. And its not like its contagious and going to infect millions of others.

Face it, in our life times, everyone will get there share of medical issues. There are some luckier than others who may not need as much care as the rest of us. Then there are people like me who get more than their share of medical care. There is no way of knowing who will get what and when.  So why do we have people who create and allow such bias and stick cancer people in our modern 'leper colonies'?

You won't know until you try it

Do you remember the commercial for Life cereal? 'Mikey likes it!' As children we were encouraged to try new things - maybe we would really like lima beans if we would just try them. (And I knew the cat would eat them if I put butter on them.)We were also the daredevils who had not yet developed the fear of pain as we rode our bikes down the steep hills (without helmets as they were not yet invented).

Some how as adults we remain skeptical of many things and have developed a healthy sense of self preservation and aversion to pain and ailments. I see this all the time as friends and people I know through online boards are not sure if they should try a medication because of fear of possible side effects. Maybe the years of seeing the single page of medical ad followed by the two pages of side print on side effects has brainwashed them.

I find this mind set a bit silly. Do they have ESP and know they will get all the possible side effects? If your doctor is recommending a medication, perhaps they are doing it to either potentially save your life, relieve pain, or cure you? They went to medical school and are more familiar with the medication than you are. Yes we can do our research and convince ourselves we will not benefit from the medication and will develop all the side effects known to man. STOP! The side effects don't happen to everyone.

If you are concerned about a medication and its side effects, talk to the prescribing doctor and ask them to give your more details on it and what you should be on the look out for. You can do research on websites such as drugs.com or rxlist.com and see the real numbers of what the chances are of a specific side effect. Tamoxifen is known to rarely cause uterine cancer - but this is so far fetched that it is not listed as a side effect on either site.

A bunch of women on a breast cancer board were discussing whether to take Tamoxifen or not because of fear of side effects. One woman chimed in and said she had not taken it because of the potential side effects and now was coping with stage IV with several metastases - those can't be undone. I was on it for 2.5 years and did not have significant side effects.

I was on Lyrica for about 2 years for back pain until it stopped working for me. During that time a friend said to me that her doctor had prescribed it to her but she was concerned about the side affects and possibly becoming addicted to it so she wouldn't take it. I recently heard from her and she is still dealing with a lot of pain and not taking it.

A bunch of women on a breast cancer board were discussing whether to take Tamoxifen or not because of fear of side effects. One woman chimed in and said she had not taken it because of the potential side effects and now was coping with stage IV with several metastases - those can't be undone. I was on it for 2.5 years and did not have significant side effects.

I am now on my third or fourth back pain medication. When one stops working and my doctor suggests another one, I give it a shot. I don't hesitate at this point. If I am living a pain filled life and there is any hope for pain free living, I am eager to try it. After breast cancer the idea of Tamoxifen and then Femara to significantly help prevent recurrence, why not. I am having osteopenia issues and my oncologist has said she wants to keep me on Femara even though it may be increasing my bone loss but she said then she would put me on something to counteract that for a year or so after I am done with it. I can live with that. I may not be happy about it but I can cope if the alternative is greater risk of stage IV cancer.


All I can say is you won't know until you try it. What is it about the fear of the unknown that keeps us from trying new things that could broaden and saves our lives? There are millions of therapists happy to make money off those who suffer from this fear.

But its scary!

In the UK, more people find cancer scarier than unemployment, knife crime or debt. Well obviously, they are a bunch of underprivileged people who have not been lucky enough to have cancer.

I have had cancer twice, but I've been laid off four times. We have a giant mortgage so that counts as debt. I have never been the victim of a knife crime (ouch) and I'm happy to stay that way.

So is it fear of the unknown? The curse of the C-word? What doesn't kill us makes us stronger?

Last weekend I was at a booth at a local council on aging event for taking care of elderly parents for the cancer support center where I work. I found it pretty humorous when the octogenarians would stop by the booth and find out that we provide support services for those with cancer. Some stopped to learn more and others would say 'no, I don't have THAT' and keep moving along on their walkers. They were very happy to say they didn't need our services.

Its a matter of perception I think. I mean what could a doctor tell me now that is so scary? I have been told twice 'you have cancer'. What else can they tell me that's scarier? I know there are other diseases out there without cures that I am happy to skip. But they are running out of bad news to tell me.

I think I find unemployment, debt and knife crimes just as scary as anyone else.

Jobs and health issues relating to working ability

If you have a medical condition, does it impact your ability to do your job? Well, yes it could. Perhaps you injured your back and can no longer perform a job that requires standing or lifting objects. What if you have a chronic condition (note: cancer is treated as a chronic disease these days)? But your brain still works and can you still contribute to the company. Would you/should you tell your potential employer of your limitations due to your medical history? No, absolutely not unless they need to know. If it in anyway impacts your ability to perform your job that is different than if you have a condition that is under control.

A case in point are the recent stories on Steve Jobs. He had a form of pancreatic cancer a few years back and recently had experienced a significant weight loss. The news headlines rang out - his cancer is back, he's going to die. Apple stock tanked. Then did he have a heart attack? Stock really tanked. The media was ready to bury him before he died. Did he perform his job in the past year? As far as I can tell he did. Also, a company is more than just one person. One person cannot be identified as a company. Someday he is going to die (sorry but true, life is a terminal condition and this will happen to all of us). However, he's not dead yet. He's still working. And the company is still going strong.

This is just one example of the millions out there fear and discrimination in the work place and other relationships. Just because someone at one time had an illness, it doesn't mean they will drop dead on you. Or that they are contagious. Or that the brain doesn't work (okay, I will admit chemo brain can be limiting). But they still are who they are and should be treated as such. Don't turn your back on these people, treat them as you would normally. I know it isn't my place to speak for Steve Jobs or Apple Computer but my point is this isn't such a rare form of bias as you might think. It happens all the time.

Okay, that was my soap box rant for the day. Maybe because I have a cold I am being extra crabby. Or the fact that I am trying to type and the (15 lb) cat insists on helping by sitting on my lap. Yesterday I worked all afternoon. Today, I am going to work from home and see how I feel. I may just stay home (as was recommended by my husband) but I have not decided yet (should I start listening to my husband now?).