Saturday, December 26, 2009

Why I'm Always Sad at Christmas

The last time that I saw my Mother alive was at Christmas. She was living in her lovely little apartment in a beautiful converted church building, near the University at which she had worked before I was born. She was the Secretary to the Dean of Women in the 1950's, and she spoke with pride about her time there.

She met my Father when they worked at the same Company; she was his boss' secretary. They fell in love, and against her family's wishes, she married him. He came from "the wrong side of town", and from a much poorer family. The marriage was most likely doomed by their decision to live in the same house as my Mother's parents; this was a common custom at the time. They separated when I was 2, and he moved away when I was 6. My Mother led a very lonely life; unlike today, there were very few "broken homes" in the 60's, so she experienced a lot of social isolation. She focused her entire life on raising me.

When my Grandfather died, and we were forced to close our family's shoe store, she had to find work as a waitress just to get along. Later, she worked for several years in a department store owned by a family friend. Her last job, which she held for over a decade, was the secretary to the Director of a social services agency for senior citizens. Finally, she became unable to work due to her worsening emphysema and congestive heart disease.

Her Sister effectively forced her from the only home which she had ever known as part of settling my Grandmother's estate. This was completely ruthless and unnecessary, as my Aunt's husband had just been awarded a very large sum of money to settle a medical malpractice lawsuit. I urged my Mother to legally contest losing her home, which she had been paying all costs to maintain, but she was emotionally devastated by her own Mother's death, and by her Sister's actions. This affected her health as well, and hastened her decline.

I was able to get my Mother into the church apartment due to her past association with the University. A wonderful husband and wife team were the building's caretakers; they lived on the premises, and kept an eye on the tenants, who were all either elderly or disabled, like my Mother. Sue and Dick often had all of the residents over for dinners and parties. It gave me comfort that my Mother was living there with such caring people. Her apartment was on the ground floor, with a private outside entrance, a combined living/dining/kitchen area, and a separate bedroom. The building's striking architectural details were preserved throughout.

That last Christmas, we visited her in her new place. I had earlier helped her put up the tree; we decorated it together, with the ornaments lovingly collected over the years, and placed our Family's keepsake decorations around her apartment. Everything looked beautiful, and she was so happy; at least some things from her former home were still with her in this next phase of her life.

She was my only parent during my childhood, and had worked very hard during some truly challenging times to make sure that I had whatever I wanted. I fondly remember the Christmas when I got my folk guitar; and the year before, she gave me a sewing machine. These were very meaningful Christmas presents, and not inexpensive. I know that she constantly put aside her needs to fulfill my dreams.

I owed so much to her, and I knew it. So, now that she was ill, I would make sure that she was taken care of in return. My husband had just gotten a better-paying job, and we were really pleased, because it meant that we could do more for her. She had emphysema, had smoked since her teenage years, and even had to have part of a lung removed because it was so severely damaged. As a result, she was unable to walk more than a few steps, or leave her home to go anywhere other than for medical appointments. I did her grocery shopping, housework, banking, got her medicines, and helped however I could. She wanted to live alone, and she liked it that way.

I would see her in person almost every day. I spoke with her on the phone just before my husband and I went away for New Year's; she was going to spend New Year's with the other residents at the caretakers' apartment.

We returned a couple of days after New Year's, and I got a phone call from my Mother's cousin: my Mother wasn't answering her phone, and her cousin was worried. With mounting fear, I called Sue and Dick at my Mother's building with this news. Sue said that she had been at their New Year's party, and had a wonderful time. She sent Dick to my Mother's apartment to check on her.

Dick found my Mother dead in her apartment; she had been dead for at least several hours. He was in tears as he told me the news. It was almost unreal. I was in shock.

In a complete haze of fear and emotion, my husband and I went to her building. Police cars were already there, with lights flashing. Upon entering the apartment, two policemen were standing there; they took my information, and let us go into the bedroom to see my Mother.

She was slumped over, looking so tiny and frail, sitting on a wooden chair; it looked as though she must have died either putting on or taking off her slippers, because one slipper was on, and the other was off. This somehow reassured me that her end came very quickly, because she wasn't able to complete the task. At least she wasn't in a hospital, hooked up to machines, as had been the case so many other times in the past, when her doctors told me that she wouldn't survive. She was only 59 years old.

The funeral home attendants arrived, went into the bedroom, and closed the door. I waited, looking around at all of the Holiday decorations, and the presents that she would now never get to use. Her bedroom door opened. Next, I saw my Mother being wheeled past the Christmas tree, but now she was in a plastic body bag. I will never get that image out of my mind. She was gone, being taken away from me forever, in the midst of a scene which formerly had been so happy. I would never feel the same way about Christmas; even now, 22 years later.

Taking down the Christmas tree and putting away the decorations which she so loved were further reminders of her permanent absence. Years later, I have no interest in decorating my house for Christmas; perhaps I see it as a bad omen, and that I will lose someone I love if I do...the mind works in such mysterious ways. This is why I am always sad at Christmas time.

Friday, December 11, 2009

Another benefit from Fosamax?

As part of my cancer treatment regimen, I was placed on a daily dose of Arimidex, an aromatase inhibitor which effectively brings your circulating blood estrogen to a non-existent level. A five-year course of the drug is now standard procedure for post-menopausal women with estrogen-positive breast cancers. The drug deprives cancer cells of the estrogen which the cancer needs in order to grow, hopefully preventing any recurrence.

Because a total lack of estrogen is extremely harmful to existing bones and bone growth, patients are usually prescribed an osteoporosis drug in tandem with the aromatase inhibitor: I was put on a weekly dose of Fosamax, and I have now taken both drugs for almost 2 years.

On Thursday, Dec. 10th, the results of a new observational study involving more than 150,000 post-menopausal women were announced at the San Antonio Breast Cancer Symposium: women taking Fosamax, or other biphosphonate osteoporosis drugs (Boniva, Actonel) had 32% fewer cases of invasive breast cancer than women who were not taking these drugs. This is a significant finding, both for the percentage of cancers avoided, and because the biphosphonates are now seen to benefit patients in an entirely different manner than for which they were originally intended.

A previous study had already established that breast cancer patients who were given biphosphonate osteoporosis medication (Zometa) intravenously every 6 months developed fewer new contralateral breast cancers in the unaffected breast.

So, treatment with osteoporosis biphosphonate drugs appears both to prevent cancer recurrence in breast cancer patients, and also to reduce initial occurrences of breast cancer in healthy postmenopausal women. The drugs are also seen to prevent breast cancers from spreading to the bones by creating unfavorable conditions for tumor growth in bone tissues.

The chief oncologist behind the latest study stated that the biphosphonates also interfere with growth of blood vessels to tumors, and they simultaneously stimulate immune cells whose role is to seek out and destroy tumor cells.

If this can all be proven, there will be other very good reasons for post-menopausal women to take osteoporosis drugs. Right now, I'm very glad to hear that I might also be reducing my chance of developing a new cancer via both the Arimidex and Fosamax. Hopeful news!

Sunday, November 22, 2009

Mixed Messages About Breast Cancer Screening

Almost 2 weeks ago, the U.S. Preventive Services Task Force (USPSTF) announced a change in their recommended routine breast cancer screening guidelines: "The USPSTF recommends against routine screening mammography in women aged 40 to 49 years." This set off a swarm of controversy and confusion.

The USPSTF's reasoning behind having women delay mammographic screening for an entire decade (!) cited that mammography has the most benefit for women aged 50 to 74, meaning that it is more effective in finding actual breast cancers among women in this age group. Mammography was cited as having "maximum effectiveness" for women aged 60 - 69 years.

For women aged 40 - 49, the recommendation mentions specifically that false-positive results occur more often within this age group. This might well be true, but as roughly 25% of breast cancers are found when women are in their 40s, I cannot begin to understand how delaying screening for 10 years could ever be advised. Also, many of the most aggressive cancers occur when women are in their 40s.

According to the American Cancer Society, for the year 2006, women in their 40s accounted for 17% of the deaths from breast cancer. This is not an insignificant number. If the USPSTF thinks that the ratio of 1900 women screened to 1 life saved is not enough to justify recommending screening for women in their 40s, they are overlooking the fact that most of the patients surveyed for any disease will not have it; that's why they call it "screening". If 17% of breast cancer deaths, and over 25% of breast cancer cases occur in women 40 - 49, their recommendation to do nothing until age 50 is completely outrageous.

And, if you're a gal who is 75 or older, you have apparently lived long enough, according to the USPSTF. There is "insufficient evidence" to recommend mammography screening for this age group. I have read some very heated comments on the web from women in this category: they are planning to live a very long time, and who is to decide that their lives are not worth as much as women in their 60s and 50s...? The answer is, "no one".

The USPSTF also mentions the "psychological harms" of undergoing screening and biopsies; I can tell you from personal experience that the anxiety which you feel while waiting for your biopsy results is nothing, compared to hearing those utterly devastating words, "We found cancer". Most women would rather undergo a temporary period of anxiety about their mammogram or biopsy results, because for most of them, it is followed by the relief that they feel when they find out they are cancer-free.

The entire biopsy process is much easier now than it was when I had my first cancer scare 16 years ago: I had to undergo general anesthesia, have an excisional biopsy/tumor removal in an operating room, then awake from the anesthesia to find out whether or not I had cancer. When my cancer was found in 2007, I underwent a stereotactic biopsy in a surgical suite, where I was awake the entire time, and only needed a tiny incision. A month later, post-MRI, I had to have another stereotactic biopsy of a suspicious growth in my other breast; thankfully, this turned out to be benign, although I had mentally prepared myself for the possibility of having cancer in both breasts.

I am very concerned that women who don't routinely get mammograms will use this as an excuse to delay or forego being screened. We all know friends or co-workers who put off getting their mammograms for one reason or another, and they will use the USPSTF's recommendation to justify their decision. This will ultimately cause more harm, and have women presenting with more advanced cancers, diminishing their chances of survival. This is costly to the patient's quality of life, and to the entire healthcare system, as these cases are more difficult and expensive to treat.

Many medical professionals are now angered by the climate of confusion and conflicting messages which the USPSTF has created: for decades, women have been encouraged to have regular mammograms, which do save lives. My cancer was found by my yearly, non-digital mammogram, and I remain extremely grateful for this. I am convinced that my mammogram saved my life.

The American Cancer Society and the National Cancer Institute still recommend yearly mammograms for women aged 40 to 49. This is the important thing to remember, and please, get screened. Life is precious.

Saturday, November 14, 2009

My Biggest Health Challenge

My biggest health challenge right now is losing the extra pounds I gained during and in the months following my radiation treatments. As I have written here, I have never weighed as much as I do now; besides the aesthetic and wardrobe limitation issues this brings with it, I need to lose weight for my continued health. I was always a tiny little person; now, I'm still tiny vertically... To minimize the risk of my cancer returning, and to prevent heart disease and diabetes, I have to lose weight.

I literally wanted to sleep all of the time during radiation; I even started drinking coffee at work (something I had never done before) just to stay awake. For someone who was always described as "perky" and "bubbly", I barely managed to drag myself through the day, by sheer force of will. The fatigue that I experienced was profound, and it made the slightest effort seem truly overwhelming. Exercising was impossible; everything seemed like exercise!

Sometimes, I would find myself eating just to keep awake, and I could no longer eat the same foods that I formerly enjoyed. At the end of the day, there was no "second wind" to draw upon for my usual working out with weights, or walking on the treadmill. Napping became a major activity; when I finally managed to go out on the weekends for a 4-mile walk, I would have to take a 2-hour nap afterwards just to be able to stay up until my usual bedtime.

Now, I find that I'm running around at work or at home, and I consciously realize that I'm getting my energy back. Last weekend, I walked 4 miles both days, and I'd like to keep it that way! I'm working out with weights regularly, although at times I feel like the photo above; I'm walking on the nature trail near my home, and on the treadmill. It's much easier walking outside than on the treadmill, though, because I feel like I'm enjoying nature, and not "exercising".

My eating habits are better now: whole grains, fruits and vegetables, lots of water, small meals. I try to maintain some of my "old" rules, such as not eating anything after a certain time of day (usually 8PM or so). I don't believe that some foods should be "forbidden"; you will just crave them even more. That's why snack-size candy bars and ice cream cones were invented! My daily medications present challenges to some patients in their efforts to lose weight; I managed not to gain any weight when I fractured my ankle and couldn't even walk for 2 weeks. That, to me, was an achievement! Right now, I'm losing 1 pound a week, and I'm happy with that.

I saw my oncologist Thursday, and said that by the next time I see her, I hope that there's less of me to see. That would be another "milestone" to reach on my way back from July 2007. Wish me luck!

Saturday, October 31, 2009

Over-Screening for Breast Cancer?

Earlier this month, both the American Cancer Society (ACS) and the Journal of the American Medical Association (JAMA) published communications alerting the medical community about over-screening for breast cancer. The estimate now is that 30% of the breast cancers which are found are so slow-growing that they are not life-threatening; and, some of these will disappear completely without any medical intervention at all.

Breast cancer screening has greatly improved the ability to find very small tumors; mine was only 2mm in size, and showed up on my yearly screening mammogram as a concentration of white dots, called microcalcifications, indicating an area of rapid cell turnover. The tumor wasn't found at my OBGYN exam a few weeks before; it would have taken months before it had grown large enough to be felt.

My tumor had already reached the invasive stage; it had broken through the breast duct, and was invading the surrounding tissue. At this point, the cancer cells have had a chance to reach other areas of the body, possibly creating secondary tumors. If the patient is fortunate, there has been no metastases, or tumor formation at other sites, and the cancer cells which did migrate elsewhere have been killed by the patient's immune system.

People have asked me how I feel about undergoing biopsies, 2 lumpectomies, 6 weeks of radiation, several screening scans and MRIs, and taking anti-cancer meds for a 5-year course when there is a 30% chance that my cancer wasn't deadly to begin with.

My response is that there is a 70% chance that my invasive cancer would have killed me, so I am very happy that it was found so early. If I had not gotten my yearly mammograms as recommended, my cancer might have spread to my lymph nodes, greatly decreasing the odds of my survival. Another advantage is that my node-negative status meant that I avoided needing chemotherapy, and I am very grateful for that.

I don't feel that I should have delayed treatment, hoping that my cancer would resolve itself. Once you find out that you have cancer, you just want it out of your body. It would be difficult, if not impossible, to just "do nothing" when you're diagnosed, unless there is an additional means of confirming that the cancer you have is indeed the non-fatal type.

My cancer was Stage 1, but even cancers this small, and some at Stage 0 (non-invasive) have proven deadly. There is so much that we still don't know about what causes some cancers to grow, and others to become dormant, or even totally disappear.

So, until researchers can determine which breast cancers are non-fatal, women shouldn't forego being screened. The ACS is standing by its recommendation of yearly mammograms for women over 40. That is vital for us to remember amid all of the current controversy.

Friday, October 9, 2009

Your "new normal"

As a cancer patient, your goal is to reach the end of your active course of treatment, and to get your life back to where it was before you were diagnosed. But, like so many other things, this is not as easy as it sounds, physically, mentally, or emotionally. And, the truth is: your life will never be the same. You have gone through a life-altering experience. There's a term for what you're attempting to establish: your "new normal"; meaning living as normally as possible, knowing that you cannot restore your pre-cancer life.

Your transition from a "cancer patient" to a "person with cancer" isn't easy. You eagerly hoped for the end of your active treatment period, when it seems as if all of your waking moments are spent going to medical appointments, imaging studies, chemo and/or radiation, lab testing, etc. You know that it's necessary, but you can't wait for it to be over, and you feel more like a patient than a person.

When you're placed on "follow-up", you're going to really miss the personal contact with, and support from, the majority of the wonderful people who got you through a hellish period of your life. You will feel very alone as you face the future. You need to prepare for how you will handle this transition, and what resources you'll need to establish your "new normal".

You may find that emotions which you suppressed during treatment are now coming to the surface, such as anger and sadness. This is similar to post-traumatic stress, or delayed grief. It's vital that you face your feelings and work through them; otherwise, they will prevent you from moving on with your life. Talking to family, close friends, or even joining a support group will help you realize that you are not as alone as you might feel at this time.

Chances are, you'll deal each day with physical reminders of what you've been through as well: I see my scars, and as they are healing, I'm also healing inside. I don't think about my cancer returning, but if it does, I know that I'm strong enough to face it. I won't allow cancer to "co-opt" my present, or my future. I wake up each day seeing the person in the mirror as someone who has "had" cancer, even though I still visit my doctors, take daily meds, and will be doing so for a few more years.

Many people, as part of their "new normal", choose to do something which gives meaning and purpose to their cancer experience. For me, it was deciding to begin this website, writing about my journey. Previously, I wouldn't have had the courage to do something like this, but this is one of the "gifts" of my cancer. I wanted to take something negative and turn it into a positive; I also hoped that sharing my feelings might be of some help to other cancer patients.

People also decide at this time to follow their dreams, do things they never had the chance to do before, or take their future life in an entirely different direction, such as: going on that trip they've only imagined, climbing a mountain, or starting their own business. The rest of your life from this point forward should be defined by you, not by your disease.

For me, the dream is to retire and to move to Maui. After all that I've been through, I'm even more determined to make this my reality. I want to die there, and have my ashes scattered at Keawakapu. When Lindbergh was receiving medical treatment in New York, and it was confirmed that he only had a few days to live, he asked to be flown back to Maui so that he could die at his beloved Kipahulu. I feel the same way.

Focus on your future, and do something meaningful with the life which has been "given back" to you.

Life is precious. Don't waste it!






Friday, September 25, 2009

Do You See Miracles?

"There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle." Albert Einstein

I read this quote on another website about a cancer patient, and it really hit home. I have always been someone who lives as if everything is miraculous, and this has been greatly magnified by having cancer.

Is life really worth living if you never take delight in what you see around you, who you have around you, and what gifts you have been given? To me, that's not living; it's just existing, and there is a huge difference.

I know that the fact that I'm alive is a miracle: when I was born 2 1/2 months premature, weighing 2 lbs. 7 oz., all that could be done was to baptize me and put me in an incubator. The amazing technology we now have to assist very tiny babies didn't even exist.

For a while, the doctors thought that I was born blind, that I would probably have severe problems ever walking or moving normally, and there was a good chance that my brain would be damaged by the inexact oxygen levels of my contained environment. My chance of survival was slim. All that I had going for me was my will to live, and the tender care of the nursing Sisters of Providence, who were completely devoted to me. I was released from the hospital 3 months later, weighing a whopping 5 pounds, still resembling a doll more than an actual baby. The doctor who delivered me used to call me "the little atom", because I was so small at birth.

I beat the odds, and survived, with no adverse affects. So, perhaps why someone like me sees life as miraculous - for me, it really is.

It's easy to get jaded and cynical about life, but it doesn't have to be that way; and, you don't have to experience life-threatening illness to make you appreciate being alive. There are miracles for you to find each and every day. It all depends on your outlook, as Einstein wisely observed.

So, I ask, "Do You See Miracles?" I hope so...