Being prepared for the realities of chemotherapy

I have always thought being proactive was a good thing. Planning ahead is good, not bad. I try to do this whenever possible - occasionally my husband has accused me of hoarding because I stock up when things are on sale.

Sometimes this is not possible. An example of this is when a cancer diagnosis turns your life upside down. You hop on the cancer roller coaster and are sent to surgeons, medical oncologists, radiation oncologists, and more. You are told it will be stressful but nothing prepares you for the realities of chemo.

In chemo, you go from feeling normal to feeling like you are run over but a bus and a herd of elephants, several times. You lose your hear, your brain, your fingernails, your appetite, and sometimes question your own sanity. You go from being able to get through your day to day life to gasping for breath as you walk up a short flight of stairs. Go read about Jamil and what chemo did to him - going from triathlete to chemo patient.

Its like there is this big secret world of the chemotherapy patient. Nurses and doctors can't tell you exactly what it will be like because every cancer is different and every patient is different. And because as medical professionals and HIPAA, they can't tell you all the nitty gritty details. Its just not possible for them.

But along comes Chemoflage where they help prepare women for chemotherapy - a bit of proactivity. Its a standalone educational program for women undergoing chemotherapy according to their website.

Unfortunately this is based in Atlanta but I would love to see it nationally. This is the kind of program that would help any person going through chemotherapy. Being a bit more prepared for chemotherapy would be a huge asset.

Now that is a misconception

Yesterday afternoon I went to the gym after work. I know a bunch of people there, mostly women, that I chat with while there. Do I remember their names? Of course not. I am sure we introduced ourselves in the past. I recognize them, they recognize me. We chat about the latest  news, weather, our inabilities to balance on one foot as much as we should, and more. And skip addressing each other by name gracefully.

There is one woman who is always relatively stylish, excessively thin, and very much a doer - always on the move. I can't remember her name if you paid me a million dollars. She always says she likes talking to me because I am so perky and positive all the time. (???) Now that is a misconception.

Yesterday I stopped her by saying I was ready for winter to be over. She replied she never heard me say anything negative. (!!) I said it was due to be above freezing for five days in a row so our giant glaciers (still 2.5 feet of solid snow drift I can walk on in the front yard).

She said she was glad to hear me say a positive thing because I never say negative things. I'm always perky. Yes she called me perky.

She has such a misconception. Not that it is a bad one. I think I won't fill her in on the real me.

Reunions and what has shaped my life

It sneaks up on you. This year I have both significant year reunions for my college and high school. I am getting requests to attend both - which I probably will. Life has changed greatly for me since then - 30 and 35 years ago.

I am still in touch with just a few friends from high school. Some of them know about my life and health issues and some do not. I went back late for my sophomore year in college due to thyroid cancer treatment and it was a much smaller school so more knew about it. I am in touch with more college friends (they are the most interesting part of my Facebook feed)

So the question looms, when one goes to a reunion how to address health issues? I have a college friend who has a bad back. At the last reunion I attended she was fairly open about it and lay down on a pew during the chapel service to avoid back pain. I sympathized with her on that.

But what about other health issues? The hidden ones. I don't feel like telling everyone about cancer one and cancer two - never mind RA and fibromyalgia. But then they are the reason I am not attending the evening events on my college weekend or staying late at my high school dinner.

The shallow people in high school are still shallow. I reconnected with someone who was once one of my closest friends on Facebook. We talked about getting together but once I said 'breast cancer', the offer was dropped.

Then there are the people who hear the word cancer and either develop pity or suddenly spout well-intentioned, but unfounded, advice on what I should do. I am not up for either of those options. My choices are to keep my mouth shut when someone says what have you been doing for the past 30/35 years and stick a smile on my face. Or skipping the issues which have shaped me in recent years.

I am on the fence on how to handle these. Reunions are not meant to talk about the low lights, but the highlights. But sometimes the low lights dominate one's life.

Thoughts on mammograms and false positives

There has been a lot of controversy in recent years about the benefits of mammography and false positives. I read Dr Susan Love's take on how "Mammography is like the TSA" and the comments left by women. It made me think.

I started having annual mammograms at age 22 because of a benign fibroadenoma so I am sort of out of the discussion. My breast cancer was discovered 23 annual mammograms later at age 45. I went to all those mammograms without any concern until the one in 2007 (and if you are trying to figure out how old I am, currently I am 37) which turned into an ultrasound, a lot of denial on my part, followed by two surgeries, chemo, radiation, and hormone therapy to where I am now.

But if it was me to do it all over again, at this point I would rather be over treated and have a few false positives along the way than to have a cancer missed. My cancer could not be felt in a manual exam. My benign one way back when could be felt. My subsequent benign fibroademona, six months after my diagnosis, could not be felt either due to scar tissue. But it was visible in an MRI and ultrasound.

If you think about it, we have a tool available to us that helps with early detection and that alone does equate to saving lives. Its like wearing your seat belt. If you wear it every day, you are making your best effort. But on the one day you need it when that car pulls out of a side road in front of you, you are saved.

Dr Love makes an analogy of a mammogram like TSA screening which I can understand as well. Any effort we can make to help us live more safely makes sense. You can opt out of wearing your seat belt at your own risk. You can opt out of your annual mammogram at your own risk. But there shouldn't be someone blocking you from access.

The risk for breast cancer starts to increase for women at age 40 so there is no reason to delay mammograms until age 50 - just because the risk is significantly greater. As Dr Love points out there are many types of cancers and each are different. She raises the question that we may need to reevaluate the goal for early detection . But until it is changed, I am sticking with my annual mammogram.

Participating in the post cancer life without criticism

Yes we must participate in our lives post cancer. We need to do the right things in order to stay healthy and help reduce the chance of recurrence. The best things we can do are the things that all adults should do - they simply become more important:

• eat right
• maintain a healthy weight
• exercise
• reduce/avoid alcohol consumption

But as an additional stressor, we tie in the emotional impact of our cancer diagnosis.

Dr Bechold, here, writes about life post cancer as not a passive sport. I agree with her points but disagree with her tone. First of all, clearly although she has been a doctor for 30 years, she clearly has never been diagnosed with cancer herself. Back to if you haven't walked the walk, you can't talk the talk.

Second of all, she seems to blame the patients for their non compliance with recommendations for exercise, healthy lifestyle, and recurrence risk reduction.

"You can’t see that breast cancer survivor every 3 to 6 months, watch her weight balloon up, and not ask her what is causing this to happen. We must take time to talk to people and ask about their lives and how they are living each day with an eye on remaining cancer free. I had one patient who was clearly having some anxiety issues. As we talked, I found out that she was self-medicating every evening with a bottle of wine. While she graded papers! After I picked my chin up off the floor, I advised her that this was not an acceptable coping mechanism."

Hmm... so back to the patient whose weight was ballooning up. Did she ask about weight gain caused by Tamoxifen or aromatase inhibitors or chemotherapy or just plain emotional stress? Maybe what we used to eat and maintain a healthy weight, now makes us gain weight? I know I have tried to eat healthy and my weight has definitely increased. I go to the gym regularly but my medications cause weight gain and my other ailments have reduced my ability to move around. I know many other cancer patients who deal with similar issues.

And to the patient who self medicates with a bottle of wine - clearly a destructive behavior - but why was she so astonished? If the patient had anxiety issues, why hadn't other interventions been taken previously such as therapy?

Finally, I am somewhat appalled by this closing paragraph:

"No more excuses. No more “I don’t have time,” or “It’s too cold out,” or “I know I should, but…” It has to be done. Just like getting up every morning and going to your job—no-shows are fired! If you don’t buy gas for your car, it will not run. If you do not buy food, you will be hungry. There are just things you have to do. Compliance is required for a pill or a lifestyle and failure to comply will compromise the outcome. No matter how many tests we order."

From the point of view of a relatively healthy, active doctor, who looks fairly thin in her picture, without a cancer diagnosis under her belt, I am sure she thinks its easy. But she needs to walk a mile in hour shoes before she can criticize us. I am just glad she is not my doctor.

A look back on blogging

When I started blogging almost seven years ago, I wrote for my friends and family. Now my blog is read by people I don't know. There have been ups and downs.

Some days I have brilliant ideas and write about them and no one comments. Some days I have brilliant ideas and forget them before I can start writing and end up writing some pile of drivel that people read for some reason.

Some things I write about I believe are really boring. Sometimes I have attempted to be controversial. I think I am mostly boring. But hey I am not writing a screenplay or anything so I can be as boring as I want.

My blog has been picked up by places far and wide - everything from Parade Magazine, to Beforeitsnews.com, to Opposingviews.com, and more - for whatever reason I have no idea. I have been selected by Healthline for one of the best breast cancer blogs - another thing I find amazing. Why do all these people care about the crap I write anyway?

I get to follow other people's blogs, and some people actually follow my blog (very impressive). My blog even gets shared by some of these followers.

I get comments sometimes. I get spam comments offering me a spiritual or miracle cure for cancer. Or other crap. I also get supportive comments which are nice.

I will say one of my top blog posts ever is "A Lame Blog Post" that ended up on Beforeitsnews I think. And got a comment along the lines of: "This is such an awful blog post". Then why did you read it if said it was a lame post?

Life Changes

As I look back on my life for the past few years, I see changes. Back in the dark ages, before that second evil cancer, I used to be a focused business person. I was the marketing manager or director for different companies and non profits. I worked full time, in downtown Boston, and I dressed up for work every day. I went to the doctor maybe 6 times a year. (I have never been the one doctor appointment a year girl).

Now I go to the doctor on the average of weekly. I have held my current part time job for almost five years where I work 18 hours each week when I can which has gotten more and more difficult. Even in the five years since I have held that job, I can see more changes. Even in the last 18 months since RA and fibromyalgia showed up, more changes.

I never thought I would be someone who sat around and watched Lifetime movies, HGTV, and even some (gasp) reality TV. I also knit/crochet, read, and surf the evil internet.

Now I carefully plan what I do to allow for downtime and rest. I look for the quality of life in the things I do. I try to help others as much as I can. I have adapted (mostly I think) successfully. But life continues to change. And it will.