Archive for the ‘cancer’ Category

Guest Post: What I Learned While Caring for my Wife Through Cancer

I received a request for a guest post from a reader who identifies with some of the writing about cancer.  I like to publish anything I can that might help others who find themselves on the cancer bus, whether as a patient or a caregiver, so I accepted his request. 

Without further ado, here is what Cameron learned during his role as a caregiver. (His wife’s name being the same as mine is a complete coincidence.)

My wife has often remarked that she can’t imagine what it must have been like for me as her caregiver when she was diagnosed with cancer. I hope that with this story I can give her a better understanding of that, as well as help anyone currently struggling through a difficult fight with cancer.

Heather’s diagnosis came three months after the birth of our only child. Lily was such a joy and we were filled with happiness to have welcomed her into our lives. We had no idea how quickly that joy would be replaced with fear and anger when Heather’s doctor gave us the news – she had mesothelioma. I watched as she cried and began to wonder how we would ever make it through this diagnosis. I was so filled with emotion that I almost broke down. It took the doctor’s many questions about medical decisions to bring me back.

I was so filled with anger after Heather’s diagnosis that I began communicating with profanity to vent my emotions. I knew it needed to stop, but it was so hard to be the rock that Heather needed. Eventually, I was able to control my temper and emotions when it occurred to me how selfish I was being. I began to understand that the last thing in the world my wife needed was to know just how scared I really was. From that moment on, I did my very best to be nothing but a stable source of hope and optimism for my wife. It wasn’t easy, but I did it.

My to-do list was so long every single day, as I inherited a multitude of new responsibilities for which I was completely unprepared. I had to work, make travel arrangements, take care of Heather and Lily, take care of our home, and take care of our pets. I also had to arrange for medical appointments and travel arrangements. I couldn’t do it all, so I learned to prioritize and accept the help that our loved ones offered. I was still overwhelmed, but this made it much easier on me. I will forever be grateful to each and every person who reached out to us with love and support during this difficult time.

The most difficult period for me was being away from Heather and Lily for two months. Following her surgery in Boston, Heather flew to South Dakota to stay with her parents while she recovered. Lily was already with them. I knew I couldn’t work and take care of Lily and Heather at the same time, so I stayed home and she went to recover and prepare for her chemotherapy and radiation with her parents. I don’t regret this decision, because it was the best one for our family, but it was so difficult. I am just so happy that we made it to a point that we had to make that difficult decision.

I saw Heather and Lily only once, for about a day. I drove 11 hours after work on Friday only to make the same drive home on Sunday so that I could go to work Monday morning. It was a lot of travel for only a few precious hours with my family, but it was worth every second.

It wasn’t easy to live like this, but I learned a lot. I learned that it is necessary to accept the help of others in a time of difficulty. Even more importantly, I learned never to regret or second-guess the tough decisions that cancer forced us to make. Rather, we learned to take comfort in the fact that we had the ability to make choices at all, as it gave us some small amount of control over a situation that often felt completely out of our control. It’s been more than six years, and despite the usually troubling prognosis for mesothelioma, Heather is now healthy and cancer free. I can only hope that our story can provide a source of hope and help to those currently struggling through cancer.

Breast Cancer Awareness, Day 31

It’s the end of October! Breast Cancer Awareness month is drawing to a close. For today’s post, I’m just gathering up all of the links for this month’s awareness campaign.

I hope you learned something useful here and can use it to improve your own life!

Oct. 1 – welcome to breast cancer awareness month!

Oct. 2 – how weight gain increases risk

Oct. 3 – BPA, part one

Oct. 4 – BPA, part two

Oct. 5 – soy

Oct. 6 – how a high fat diet increases risk

Oct. 7 – breast cancer in men

Oct. 8 – corporate pinkwashing

Oct. 9 – why you might not want to support Komen

Oct. 10 – who is unaware…?

Oct. 11 – why buying pink doesn’t do much for the cause

Oct. 12 – places to donate

Oct. 13 – prevention vs. early detection

Oct. 14 – birthday ramblings

Oct. 15 – the beginning of statistics week!

Oct. 16 – stats

Oct. 17 – stats

Oct. 18 – stats

Oct. 19 – stats

Oct. 20 – stats

Oct. 21 – stats

Oct. 22 – personal story: breast cancer perspective

Oct. 23 – personal story: colon cancer perspective

Oct. 24 – personal story: lung cancer perspective

Oct. 25 – collection of personal tales

Oct. 26 – personal story: caregiver perspective

Oct. 27 – nothing! I missed a day!

Oct. 28 – what are carcinogens (definition and list)

Oct. 29 – a resource for household toxins

Oct. 30 – self checks

Breast Cancer Awareness, Day 30

While prevention is ideal, early detection is second best.

Ladies, self-checks are the way to go. Almost all of the women affected by breast cancer who I know personally found it themselves.

Here is a good resource for how to do a good, thorough breast exam. Once a month is recommended, but if you never do it and start to do it less than once a month, well, that’s better than nothing.

The follow-up to this, of course, is that if you find something, you need to go to the doctor. And if they blow you off, go to another doctor.

 

Breast Cancer Awareness, Day 29

We come into contact with hundreds (thousands?) of toxins every day, in what we eat and drink, what we wear, what we breathe, where we sleep, where we work, where we play, what we apply to our skin, and so on and on.

It is impossible to avoid all of them. It would be maddening to try to avoid all of them. So you need to decide which are do-able, or which are important to you.

In most cases, choosing healthy alternatives costs more up front but less in the long run than less healthy alternatives. Healthy is often less convenient, based on the conventional definitions of convenience. (Keep in mind here that “convenience” is subjective…) But changes in mindset and changes in habits can easily leave you with a life with fewer exposures to carcinogenic materials. Less exposure is better, right?

One website that I have found to be an excellent resource is Environmental Working Group (www.ewg.org). They have databases of various categories of consumable products, giving grades of each based on the toxicity of ingredients. The ingredients are listed out with explanations of what the issues are with each.

(EWG’s work is not perfect, but they remain a great resource, especially for people who don’t know what all of the ingredients are in their shampoo, sunscreen, moisturizer, etc.)

In my opinion, there is too much stuff out there that is really bad for your body. The vast majority of it is unregulated (see: cosmetics industry), so corporations can put just about anything they want in their products.

It is wise to take caution in at least some aspects of life. I personally use alternatives for many things that I have control over, knowing that there are so many remaining where I don’t have control, or where I choose not to avoid.

What is the most surprising “that’s not good” tidbit that you’ve picked up anywhere that has led to a change in your behavior? I’ll start: particleboard/pressboard is a major contributor to indoor pollution and offgasses formaldehyde. So we’ve stopped buying particleboard furniture. Not that we buy a lot of furniture, but we looked for a desk for a long time before we found a nice, affordable solid wood desk. (Consignment!)

Breast Cancer Awareness, Day 28

Carcinogens cause cancer.

They don’t all cause the same cancer, and exposure and risk vary wildly.

That said, In poking around for information, I found a page on carcinogens, exposure, and risk, as well as an explanation of the differences between the labels: known, probable, possible, probably not carcinogenic to humans, including lists of known and probably carcinogens. Click through to read more.

Breast Cancer Awareness, Day 26

I wanted to be sure to include a piece from the perspective of caregiver. Too often, the people taking care of the patients are forgotten, but their lives are upside down as well – between worry (stress), added responsibilities around the house/transportation/etc. (stress), plus just the absence of their usual partner/family member/friend in the normal way.

The Big Man was gracious enough to write a little piece, but I want just to point out – this is his experience with me as a patient. Your patient might be different. It is important to find out from the person you’re caring for what they need. That is the only one-size-fits-all advice.

Let me introduce myself – I am Tom, Heat’s husband. She refers to me as The Big Man in her blog. She wanted me to share a bit about being a caregiver during her bout with Hodgkin’s Lymphoma. It was almost five years ago, but many of the memories remain vivid.

When she was diagnosed, it was a shock to both of us, but Heat did not waste a lot of time on tears and resentment about her situation. She was very positive about being cured from the very beginning of her treatment, but I have to admit that for a time I thought that she was not being “realistic” enough, even though chances were very high that she would be cured. I wish now that I had bought into her positive attitude sooner, and better supported her in her thinking right away. Sometimes “realism” is a good thing, but it was her fight, and she needed to fight it her way.

I also wish that I would have responded better in the amount of time I spent with her. There were times that I should have left work earlier and been home sooner. I feel badly about this to this day. Don’t get me wrong – I’m not saying that I was a failure as a caregiver, but I could have done better. She was in a fight for her life, and she needed me to be with her as much as I could be. Even in situations where someone else that we love is obviously in need of presence and care, it can be very easy to think of oneself first.

Enough of the confessions. So much of what I was able to do for Heat was based in simply being present. She did not want to be treated as a “sick person” and tried to live as normal a life as possible. To be with her, to share her fears and hopes, was a great blessing. Her positive attitude did make it much easier for me to help care for her, and in the times that she was down in spirit, I felt it my job to be reassuring and encouraging in my words and actions with her. Most of the time, it was not difficult to be of service. Whether in fixing dinner or going with her to her chemotherapy sessions, I felt good about helping and knew that she appreciated it.

Loving each other, of course, was key.

Heat is a fighter, and I learned much from her example about how to deal with a deadly disease. I am glad that I was able to help her during her struggle, albeit imperfectly. We knew that Hodgkin’s had a high cure rate, and that gave us a lot of hope. That hope has come to fruition in Heat’s recovery, remission and cure.

Breast Cancer Awareness, Day 25

Today’s personal stories are my recollection of stories told to me by people who I have met through my cancer journey. There is a common thread, with a moral at the end of the stories…

One woman had found a lump using self-checks. She went to her ob-gyn who didn’t feel anything and told her she was fine. Months later, the lump was getting bigger, so she went to her new doc who sent her for a mammogram that confirmed the tumor. Fortunately, it still had not spread. Unfortunately, because it had grown so much, she needed a lumpectomy, chemo, and radiation.

Another, with a family history of breast cancer, was diagnosed with a tumor in one breast. (I don’t know the circumstances of her diagnosis.) She told the doctors she wanted a double mastectomy. They were hesitant – they’d found cancer in only one breast, and even that entire breast didn’t need to be removed. She was young and they thought a double mastectomy was an overreaction. She persisted, and they relented. After biopsying both breasts, they found cancer in both. They told her it was very small in the undiagnosed side and probably would have shown up in three to four years.

A guy who I saw at chemo every week for months had had a colonoscopy that showed problems, but the doctor told him not to worry about it, that he was too young to have cancer. When I met him, it was four years later. He was on his second full course of treatment after the first one didn’t work for the cancer that had spread from his colon to his liver.

Doctors know a lot. But they don’t know you as well as you know you. If you know something is wrong and your doctor blows you off, get another opinion. You might be relived to hear someone say it’s nothing, but them telling you it’s nothing doesn’t actually make it nothing. Seeing doctors is scary. Getting tests done is scary. Getting a diagnosis is terrifying. But Stage 1 is infinitely better than Stage 4, and the only difference is time…

Breast Cancer Awareness, Day 24

Today’s post is from Lorraine Kerz. She lives in Greenfield Massachusetts. She is the founder of Sy’s Fund, a tribute fund to her son Silas “Sy” River Bennett. Sy’s Fund provides meaningful gifts and integrative therapies for young adults with cancer ages 18 through 39. It is a national fund.

In the autumn of 2007, my son Silas “Sy” River Bennett was not thinking about cancer. He had returned to college to study journalism, and with the presidential elections coming up, Silas was excited about meeting the candidates and asking the tough questions. In fact, he was due to graduate in the spring of 2008, and it was clear that he had found his calling with journalism. Outspoken and brave, with an electric mind and hilariously dry sense of humor, Silas was ready to take on the world.

He had been plagued by what he thought was a pinched nerve in his neck since early that summer; like many young adults, Silas did not have health insurance, so had put off seeing a doctor for financial reasons. Several weeks into the school semester, my son woke up one morning to find that he could no longer get out of bed on his own. He called for an ambulance, and was taken to the local ER. There, with one simple x-ray, Sy’s world was shattered. It was October 1st, four days before his 29th birthday, when Silas found out that cancer had eaten through a vertebra in his neck. Shortly thereafter, he was diagnosed with non small cell adenocarcinoma lung cancer. The cancer had moved outside of his lung and spread to his bones, making it stage IV.

I cannot imagine getting such devastating news at the age of 29; the news that there was no cure, rather, that doctors would try to control the cancer for as long as they could. I do know that as a mom I felt that we had to fix it. After all, it was 2007, and with advancements in the medical world, it had to be possible. Little did I know then that Silas had been diagnosed with the most highly stigmatized and underfunded cancer possible.

Silas endured chemotherapy, radiation treatments, two separate surgeries to stabilize his neck, and a clinical trial. He was very sick, and was hospitalized more often than he was happy about. Silas fought hard, and he did everything within his power to stay on this earth for as long as he could. Yet on May 27th, 2008, less than 8 months after his cancer diagnosis, my beautiful son took his last breath.

When Silas was sick, we talked about the stigma and lack of education around lung cancer. We talked about helping people to understand “when he got better.” I had promised him that I would do my part to help spread awareness. In my mind, my son was the one standing beside me, doing the talking; he was, after all, the journalist… In my mind, Silas would get well again, and continue working for social change. After Sy’s death, I knew that this was a promise I had to keep for both of us now.

Some facts:
• Lung cancer is the number one adult cancer killer in the United States.
• Lung cancer kills more people each year than breast, prostate, colon, and melanoma cancers combined.
• 65% of new lung cancer cases are diagnosed in people who are former smokers, or who have never smoked.
• Over 50% of new lung cancer cases will be diagnosed at a very late stage.
• For each person who dies of breast cancer, over $26,000 will have been spent on research, while for each person who dies of lung cancer, a mere $1,200 will have been spent. (Lung cancer advocates do not want less money to be spent on other cancers; rather, we are looking for equal opportunity funding.)
• Lung cancer can be caused by radon, lead, chemical exposure, unknown pollutants, house fires, and there are possibly hormonal and genetic links as well.

Some people who get lung cancer are smokers, and some are not. I like to think that eventually we will evolve enough as a society to recognize that a person is far more than their nicotine habit, and that by virtue of being human, we are in fact imperfect. It’s time to get on with the important business of demanding funding for lung cancer research. It’s time to move on from the shame of lung cancer and recognize that each human life is precious, and that people we love will continue to die needlessly until we become a united voice for change. As Sy’s mom, I am heartbroken. Yet with Sy’s courage and ability to speak up for social change, I know that I must find courage of my own to speak for those who are no longer here, and to fight for those hundreds of thousands who will become victims of this horrific disease if we do not lend voice to ending the stigma and insist on funding for early detection, research, and cures. It’s not too much to ask for, truly, it isn’t…

Breast Cancer Awareness, Day 23

Today’s personal cancer account is from Michelle who has posted here before.

My name is Michelle, and I’m a two-time cancer survivor.  Since April, I’ve been shaving my head — the chemotherapy I was on caused itching and sensitivity on my scalp.  This outward symbol of my fight has often prompted conversations with strangers, and I’m surprised at how many people assume that, because I’m a 30-something woman, I have breast cancer.

Usually, these conversations center around someone telling me about their mother/sister/aunt/friend/cousin that battled breast cancer, and that person’s story, and how the well-meaning stranger just knows I’ll beat it and be a survivor and…

Then, they see my blue bracelet on my wrist and stop, and look at me with a perplexed smile on their face.  Or, they ask how I was diagnosed, and I tell them I had a colonoscopy.  I’ve even had someone ask me where I had my reconstruction done, since “they” look so good.  *sigh*

These moments can (and often do) become a teaching moment.  I’ve become, whether I like it or not, a walking billboard for colon cancer.  I tell my new friend that I’m a colon cancer survivor, and more often than not, the reaction is confusion.

“But that doesn’t happen to women.”

“I didn’t know it could happen to someone so young.”

Colon cancer does not discriminate.  Traditionally, it’s diagnosed in people over the age of 50.  However, recently, there’s been an increase in the number of people diagnosed under the age of 50.  Matter of fact, the age group with the largest increase in diagnoses is 20-29 years old.

There is a lot of research currently taking place to try to determine reasons for this disturbing statistic.  I won’t use this forum to speculate on those reasons.  I will, however, provide you with a few things you can do to help lower your risk.  I’ll also provide you with some of the most common signs and symptoms, so that you are armed with what you need for early detection.

Consider your car: you put fuel into it, you get the oil changed, and you perform routine maintenance on it.  These steps are required to ensure that it will start when turn the key.  Your body requires the same upkeep — proper fuel, routine check-ups, etc.

It is a proven fact that cutting down your intake of red meat can decrease the potential of colon polyps, which are the pre-cursors to colon cancer.  I’m not asking you to never eat steak again.  Instead, eat fresh fruits and vegetables, lean proteins, and increase your intake of whole grains.  Remember that the food you eat is fuel for your body.  If you don’t put the proper fuel into your body, it may not run as well as you’d like it to.

Exercise is a must — it’s not an option.  Our bodies are meant to be used; if we are sedentary because of our jobs, it is our responsibility to make sure that we carve out regular time to work out.  I’m not recommending that you go out tomorrow to run a marathon – but, start out by walking for 20-30 minutes daily.  Regular exercise increases your body’s ability to fend of disease, recover from illness, fight off germs, and increases your endorphins (those feel-good hormones).  It helps provide your body with the strength and endurance to fight and recover from the awful things that can (and, let’s be honest, will) happen to it.

Be aware of the signs of colon cancer.  Be aware of your body, and be strong enough to talk with your doctor if you have concerns.  Colon cancer is much easier to beat when it’s found in the earliest stages.  If you have blood in your stool, changes in your bowel movements, unexplained weight loss or gain, or you feel like you are not emptying your bowel after a movement, talk with your doctor.

Typical screening for colon cancer begins at 50, if you are asymptomatic and you have no family history of colon cancer.  However, if a first- or second-generation relative (parent, sibling, child, grandparent, etc.) has a history of colon cancer, you should start getting colonoscopies 10 years prior to that person’s diagnosis.  For example, I was originally diagnosed at the age of 31 — my children will need to start getting colonoscopies at the age of 21.

In addition to the above, you must also get screened if you have symptoms.  You may be able to explain away some blood on your stool, occasional diarrhea, constipation, or bloating…but, wouldn’t it be nice to know that what you’re experiencing is nothing more than a hemorroid, a reaction to your diet, or dehydration?  That peace of mind?  Yes — it’s worth it.  Believe me, it’s better than the alternative.

This month, the pink ribbon is everywhere.  We are all more conscious about breast self-exams, mammograms, and general awareness of this awful disease.  Please remember that you need to be aware of your body all year long, and to talk with your doctor if you have any questions.  If something doesn’t feel right, don’t blow it off.  In my case, talking about my concerns saved my life.  Because I had an uncomfortable conversation with my doctor, I’m here to raise my children.

And, for the record, while my fight isn’t over yet, I’m winning.  🙂  Michelle 2, Cancer 0.

Breast Cancer Awareness, Day 22

This week, I have some personal accounts of cancer for you. They are not all breast cancer, but really, “You have cancer” has a smiliar effect on anyone, regardless (more or less) of what kind of cancer it is.

Today’s personal account is from a woman who wishes to remain anonymous. She is a breast cancer survivor.

As I pondered about what to write for this piece, it occurred to me that I did not wish to dwell on the physical aspects of this journey, because in reality it has been a much more profound emotional and psychological experience.

I am a believer that all things happen for a reason. That reason may not be apparent to you at first, or even for many years. However, the journey you take may not just be about you. It may be for someone else’s benefit. Perhaps someone you love needs to learn lessons from your experience. We are always teaching.

I have learned that so much of what we have to deal with daily is insignificant and unimportant. Many people are so wrapped up in themselves…what they wear, what they drive, what kind of electronic device they own etc. These “things” do not define who we are, no more than this diagnosis defines me!!! Are you kind? Are you compassionate? Are you emotionally intelligent? Are you emotionally available to others? This is what really matters…at least for me!

I have learned to be careful not to be too quick to judge others, for everyone is struggling with their own battles. Say a kind word, smile more, lend a hand, and speak softly.

I have learned, most importantly, that I am loved!! The support and immense love I have felt from my family and friends through their acts of kindness and caring have been overwhelming and humbling. When we are faced with our own immortality, these are the things that matter. It may sound cliché, but remember that every day is a gift, that is why it is called the present.

Epilogue:

What a coincidence!!!……..

As I am writing this, I am on a flight to Salt Lake City. The airline is selling “pink” lemonade for $2.00, with 50% of the proceeds going to breast cancer awareness and research. I don’t like the “pink thing” much. It is corporate’s way of capitalizing on someone else’s tragedy to make a buck. Distasteful to me….just my thought.

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