Saturday, November 19, 2011

Breastcancer.org link

Ok, it's up!  The new link is www.breastcancer.org and click on "blog."  I have an introductory piece up, as per request of the breastcancer.org people, describing who I am and what I plan to write about.

I would like the other articles to be less about me, and address the breast cancer experience in general.  But in writing my second article, I realize that it is very dry for a non-expert like myself to write an informative article but omit all the personal connections to the subject.  So even though I need to write about my own experience to personalize the articles, I know that it is  not about me.  I'm not going through treatments anymore.  I am hoping that women or men with breast cancer may be able to identify with the articles and find them helpful.  Or if not helpful, then at least interesting.

Please check it out.

Wednesday, September 28, 2011

Soon to appear on breastcancer.org!

I am going to be writing a blog for publication on the breastcancer.org website!  It's a big honor, especially since that website is an important information source for millions of women, and men too.  The site itself contains a lot of useful information and the discussion forum is a great place to connect with women or men who are going through a breast cancer diagnosis, or who are survivors.  Publication on that site of course depends on whether I can focus myself to construct readable essays of relevant topics.  If you have any suggestions, send them my way.  I will post here to let you know the link when I have my blog up on that website.

Sunday, September 4, 2011

The "radiation is done" Triathlon in Lake George, NY

66 degrees water temperature.  That's the only thing I kept thinking as I set up my bike and run shoes and equipment at the transition area of the Lake George triathlon.  I did not bring a wetsuit.  I do not own a wetsuit.  Used to have one but I sold it on ebay in frustration after enduring friction burns to my neck during a swim event years ago.  The lack of a wetsuit would not have bothered me if I had not heard that announcement: "The water temperature is 66 degrees. Bundle up."  Almost every other other competitor - there were about 400 - schmooshed their bodies into tight neoprene wetsuits.  I had bike/triathlon shorts and a sleeveless triathlon top plus a thin rashguard for whatever extra warmth it would give, and a whole lot of early-morning-in-the-Adirondacks goosebumps.

A woman with a pink breast cancer ribbon tattooed on her left arm was putting her legs into a wetsuit.  She was flat chested, definitely post-mastectomy.  I thought about how to approach her, immediately feeling drawn to talk to her.  I didn't want her to think I noticed her chest, so I pointed to her tattoo. Turns out she finished treatment two years ago and was doing her first triathlon since treatment.  She was nervous and excited.  I told her I finished treatment on Thursday, suddenly feeling very green and fresh off the boat in terms of the whole "survivor" mentality. 

The swim went off in waves.  I was in the 40+ women wave - the middle aged and older women leaving the shore last, after everyone else.  Fine with me, as getting kicked and punched and having people swim over me in the water is always nerve-wracking.  You realize that drowning after a swift kick to the head is a distinct possibility.  With that thought in mind, I heard the announcer call the neon green swim caps to the beach.  That's me.

The water didn't feel as cold as I expected.  No ice cubes or glaciers floating by.  It felt almost balmy.  I saw the turn around buoy half mile out in the lake and it didn't seem too intimidating.  It was a 1-mile swim and the water looked pleasantly choppy but no major waves.

"On your mark, get set" then foghorn, and I jumped in.  Kick, punch, elbow to my waist - man, these middle aged women are vicious!  Finally we spread out in the water as the faster swimmers took off into the horizon. I got into a rhythm and focused on my form.  The water was clear enough to see feet ahead of me and just follow them.  The swim was fun and pleasant.

Next events were a 25 mile bike and a 10K run.   Biking is my strongest event and, since we started in the last swim wave, I was already in back of the pack and had fun passing and passing and passing people.  Parts of the bike course went on a paved bike trail, winding through scenic woods and wetlands. The last five miles followed the serene west shore of Lake George.  It went fast and I felt my legs fatiguing from the sustained effort as we hit the 25-mile mark.

I jumped off the bike, got my running shoes on with my dorky pink ribbon laces, and headed out to the two-loop run.  As I left transition and turned up the first hill I heard "mommy! mommy!"  My two girls and husband were sitting on a rock watching the race and shouting.  They probably had been waiting a very long time for me to pass, considering we all woke up at 5:30 and the race started at 7:00 and it was already 9:00.  Do the math, and it amounts to a long time for a 7- and 8-year old to be waiting. Maybe some day they can race and I can cheer.  Or we can race together.  I thought all these thoughts as I ran to them, high-fived them all and then continued on the run.

In triathlons you always get your number magic-markered onto your arm since you can't wear the number in the swim, and also in this race your age was magic markered onto the back of the calf.  Presumably this stirs competition; you know who to compete with for an age group prize.  Most women I saw in the run were in their 20s and 30, according to their calves, but there was an occasional woman with a "46" or "48" on her calf.  My legs felt heavy and I did my best to waddle over and pass if I could.  But all in all, I was mainly competing with myself, not expecting any great times, and enjoying the challenge.

I finally finished in 2:50.  Emily and Sami came over and gave me a bouquet of wild flowers that they picked.  So sweet.  Through some miracle of science, I came in 2nd in my age group (out of only about 25 women, but we'll keep that quiet..)  We stuck around to wait for the prize, which turned out to be a pint glass.


I saw a woman with a baseball cap in Maryland a few weeks back with the simple yet meaningful words: "Fuck Cancer." That's exactly how I felt yesterday.  Fuck cancer.  Cancer did not kill me and did not slow me down.  I know of women who are chronically fatigued, and have joint pains or neurological issues from chemotherapy -- and my heart goes out to them.  Women with metastatic breast cancer who have a long road ahead of them in terms of years of treatments and surgeries. 

So I am humbled to be able to finish treatments  for stage II cancer with decent health and virtually unscathed - apart  from some pretty gruesome scars and a few missing body parts.  As for me, I think I can safely say that cancer is in my past; it's no longer part of my present.   I am ready to move on and not have to focus any more energy at this point on getting through treatments.    It has taken a  back seat in this middle-aged lady's life


(Stay tuned for word about an upcoming fundraiser.  Not that you're dying to part with your hard-earned cash, but there are a lot of breast-cancer oriented organizations and research institutions that are worthy causes.  More to follow.)

Sunday, August 28, 2011

Last and final update

It ain't over till it's over.  The fat lady hasn't sung yet. Bread is still baking in the oven. Now I'm out of cliches.  Suffice it to say that you thought I was done and I thought I was done, and my husband sensed that I was done, but the reality is that I'm not done.  After a weekend of fun in the sun, lake swimming, trail running while the kids are away on their Disney cruise with grandma, plus a lot of skin healing, I realized the trapezoid sunburn pain is not really that painful, and cancer regrowth would be a lot worse than a short term sunburn.

I have no  idea why I thought that the sunburn was worse than cancer.  Temporary insanity.

So the scales of good judgment are back in balance.  I returned this week to the zap machine at Sloan Kettering to finish the last five of twenty-five treatments.

So by September 1, we will be DONE with radiation.  Dare I say "Done?"  Could it be true?  I darn well hope so.  Just in time for race day.



Monday, August 22, 2011

Update on treatments





But last Thursday, I did it and quit.   I drove to Sloan Kettering, talked to the nurse, teared up, and told her I was afraid of more treatments.  She didn't talk me into it or out of it, and didn't really say much of anything, except to remind me that she had warned me that the skin would burn. Yet the fact that she warned me a month ago had nothing to do with how I felt last Thursday. So I followed my conviction, threw in the towel, and I left.  I know that I may have reduced my risk somewhat by the radiation but did not completely eliminate the risk.  I reasoned that I was in the "grey area" to begin with; one oncologist recommended radiation to reduce my risk of recurrence to the chest wall, and the other said there wasn't enough medical evidence that it was necessary for someone in my shoes. 


Thanks for reading.


Sunday, August 14, 2011

Family reunion 2011

I love my family. We have a family of comedians. And comediennes. Cousins from up and down the east coast converged on Rocky Gap Resort and State Park in Maryland for a weekend of catching up on graduations, jobs, health, boyfriends, kids and everything else. Outdoor activities, food, exercise, and socializing were on the agenda.

Since the theme of this blog is surviving breast cancer, I need to point out that some of my relatives are breast cancer survivors.  Two aunts and a first cousin, to be exact, so it is a relatively known disease in this family of mine. Fortunately, no one that we know of in the present generations, which includes individuals from 6 months of age to 86 years of age, have died of the disease. My 86 year old aunt had it twice, once in each breast, in 1970 and 1975, before chemotherapy was used. She had mastectomies and radiation and no recurrence. No chemotherapy, no anti-estrogen pills, just radiation and a radical mastectomy.

Was her health care options as broad as those available today? Definitely not.  But external beam radiation, directed to a specific area of the body, was available.  And it was enough to get rid of the cancer, not cause any fatal radiation overdoses, and kept her alive and well for another 35 years and still going strong.  She may well still be running around at 100 at her rate. The radiation alone and the mastectomies, for her, prevented any recurrence. While I am sure 1970 and 1975 were not happy years for her, and probably left some battle scars, life was much more full and memorable and didn't stop in 1975 for her.

So thinking about my aunt, and her 85 year old sister, and my cousin, reminds me not to fear the radiation, but just to get through them by putting my nose on the grindstone.  (Is that the right cliche?  I'm not even sure what it means.  Hopefully you do).

I know there are radiation overdoses and long terms risks, but I am pretty certain that my facility crosses its t's and dots its i's in terms of checking the equipment every morning, making sure that the dosage is accurate for each patient, and spending lots of time ensuring that patients like me are positioned in the same exact way for every treatment, with one arm up and laying my head and arm in the plaster mold made just for me.  At least that's what they tell me, and I have to believe them.

There are lots of holistic options, from oils to diet and herbs.  But it seems to me that we ought to take advantage of all modern medicine offered.  I know I want to make sure that my life is just as long and cancer free as my aunt's is.  Not only is she cancer-free for 35+ years, but she is fit and one of the sharpest tacks in the family gene pool. 

Friday, August 5, 2011

Did Google send you here?


Google's blogspot website tracks the traffic to each particular blog. Not only does it indicate the number of "page views" per day, but it also tracks the popular key words that people used in a search engine, which led them to unwittingly stumble onto a blog. So I found myself, earlier today, reading the numbers. I was at first shocked to learn that more than a handful of people read this blog. Shocked. Though I'm not exactly sure if they read it, or just mistakenly clicked on it then ran away to the blogosphere.

But I was more shocked to learn that three people -- whoever they might be -- used the google search words "little girls breast" and then were led to one of my entries from April 2011. And that entry had nothing to do with those keywords, I might add. Nothing.

I was amused at the thought that such a disgusting, demented person may be in for a surprise to find that this website is about the breast cancer journey of one very conventional mother of two, and nothing more than that. What sicko searches for "little girls breast" on google? Don't you, dear person, have anything more important to do than succumb to perverted desires as you sit yourself in front of your monitor on a lonely Friday night?


Maybe my misleading the person to this website will be so aggravating to the pedophiliac researcher that he will just give up and log out. And my writing this little blog entry will save a child from having their image peered at for demented entertainment. That would be a good thing.


(By the way, I am amused at the thought that anyone who now searches for "little girls breast" will probably land on this website, judging from the frequency in which I used those words in this post alone.}

On the other hand, if the search was related to a medical condition or other legitimate question or concern, then I'm sorry I called you a name, and good luck with that.

I admit that I have done google searches to learn about medical conditions. In our house of hypochondriacs (and I speak only for myself here), there have been dozens of symptom searches. I have been known to search for "how to extract baby tooth that won't come out" and "do I have skin cancer or a hairy wart" and "what does green poo mean." Don't ask.

So I could be misreading the situation. Or misreading the stats that blogspot provides. Either way, I really hope that whoever is searching "little girls breast" is not finding what they are looking for. Unless they need to find it for medical reasons. Then it's okay.


For those of you who read the blog out of pure interest or concern, please come back to read more. I swear you are almost completely in good company.

Friday, July 29, 2011

On the radiation table and triathlon training


I haven't blogged in a while. Since I last blogged, I got convinced to come back to Sloan Kettering for yet more treatments. And I'm also training for Lake George Triathlon on September 3rd.

All I can say is that I thought I was done. They keep thinking of new treatments to give me. I thought I was cancer free. They just don't want to let me go just yet. The radiation oncology chief told me that those pesky cancer cells could conceivably return to the chest wall. There's a 17% chance they will. Something about the presence of "vascular invasion" (i.e. cancer in the bloodstream in the breast) and those multiple fast growing tumors that were removed at surgery in January could have shed some cells, not killed by chemotherapy.

But I thought chemotherapy was going to kill everything in my body that wasn't supposed to be there? That's why we did it, right? Isn't that why I lay in bed after chemo with waves of nausea, but kept going back for more?

Well, apparently not. The radiation oncologist feels that radiation is just the thing I need to absolutely make sure, positively, that the cancer will not come back. At least not to the chest wall. Maybe I shouldn't have asked him in the first place. I mean, after all, he is in the business of dispensing radiation. I wonder if he ever actually recommends skipping radiation? That couldn't be good for his business.

So given the radiation oncologist's recommendation, and my inability to locate any scientific information to prove him wrong, I am back. The radiation table awaits me at 8am, Monday through Friday, for 28 treatments. Today was number 8. At least it gives me something else to blog about.

When I think about it, 28 to me seems like a random number. If 28 is good, why isn't 20 good enough? Maybe 28 is overkill. Though, admittedly, I have absolutely no knowledge about the adequate amount of radiation doses.

So far, no sunburn and no major side effects. Just some lingering pressure in my pec muscles, which are apparently part of the radiation field. The swimming seems to help. Also just not thinking about it seems to help a lot too. It's the kind of pressure that you can distract yourself into believing it's gone.

I am able to squeeze in my swim, bike, run workouts so far. There is always lunch hour (or "hours" as the case may be) or after work or very early mornings. Radiation or not, the race is on the calendar.

Thursday, July 21, 2011

3-time cancer survivor laps me in the pool

Check out this video. I met this woman at the pool yesterday. She was swimming so fast and furious that I had to talk to her to tell her what an amazing swimmer she is and find out what she was training for. You don't swim that fast and furious without a goal. Turns out that she is an event coordinator for the San Francisco event of Swim Across America and is doing a New York Swim Across America event next weekend. Swim Across America is a group that raises money for cancer research. She is a competitive swimmer who was hit three times with three different kinds of cancers! I will never complain again or lament early stage breast cancer. This woman is simply inspiring. The 6 minute video is worth watching. You'll have to copy and paste it in your brower.

http://growingbolder.com/737153.html#content_tabs

Monday, June 20, 2011

Swimming among the flowers


The mountains of the Shawangunks, just south of the Catskills in New York, are blooming with mountain laurels. Bright white bell-shaped flowers everywhere on the mountain trails. These are the two or three weeks in the year when these cute whitish pink flowers are in full bloom. Seeing these flowers on a beautiful June day makes you feel so alive.

The Park's main lake is open for swimming and there is a long-distance swim section where I managed to fit in a mile swim after work, quickly changing from my lawyer suit to a bathing suit and running shorts in my own makeshift changing room, a/k/a the front seat of my Honda hatchback. But the inconvenience of a quick, cramped clothes change was worth it. It is so breathtaking to be swimming in a clear, clean lake, only accessible by dirt hiking trails, surrounded by the mountain laurels and greenery. And to hang out with some friends from my swim group who, like me, were drawn to this lake in June.

Saturday, June 11, 2011

Waiting for grass to grow

Waiting for my hair to grow. It's like watching grass grow -- nothing happens for a very, very long time. With grass, after a week, you suddenly have an overgrown scraggly lawn that needs immediate mowing. For my hair, it might take a good while longer. No sprouts so far.

In the meantime, detoxing the body is an important post-chemo chore. Detoxing means loading up on fresh, organic food and anything packed with vitamins and antioxidants. Yogurt, broccoli, beans, salmon, almonds are good staples.

One good food to supplement the diet, whether you're detoxing from chemo or just trying to stay healthy, is wheatgrass. It’s hard to locate wheatgrass unless you live near an organic juice bar. The grass is not sold in supermarkets or health food stores, and seeds are not sold in regular gardening stores. But you can purchase seeds over the internet at places like www.sproutpeople.com or other websites and, let me tell you, there is nothing that tastes healthier than freshly-cut and juiced grass.

Apparently, wheatgrass is full of chlorophyll which makes the grass itself bright green, and the juice that it produces is the same color. Wheatgrass has been said to help increase the body’s immune system and has a high amount of iron that increases production of hemoglobin and incorporates all the important amino acids. An ounce of wheatgrass also packs a good load of vitamins A and C.

It is not hard to grow. All you need is a few containers to soak the wheatgrass in for 24 hours until it sprouts, then good quality organic soil to line a shallow growing container for it to create roots and grow. We have several large plastic lettuce containers around the house for the grass. It’s ready in a week.

Our kitchen is starting to look like a greenhouse, with wheat grass in various stages on the floor. For whatever reason, no one in my house has been sick in a month. While that could be due to warm weather and sun, I like to think that the wheatgrass has something to do with it.

Friday, June 3, 2011

Done with chemo!

Seventh and last chemotherapy is done! I am so relieved. I arrived for my chemo feeling over-confident and forgetful of my obligations to hydrate so that the veins would be more visible. Instead, I over-imbibed on champagne for my grandmother's 95th birthday the night before (which was worth it!), and then forgot all about the water.

The nurse had a hard time finding a vein, then getting a vein to accept the IV. The first vein swelled up like a grape within a minute after the needle was put in. It was a worrisome site for me. Sheila, my RN, did not seem too alarmed, but she did pass me onto another nurse. The next nurse tried two more veins that she found after heating up my arm with a heating pad, and as they each started to blow up and wouldn't take the IV, she band-aided the needle marks and then called in nurse #3. I'm now running out of veins on my right arm, since the left arm can't be used for IVs due to my lymph node removals. Fortunately, she found one on the back of my arm, and the fourth one worked like a charm. After that, they dosed me with pre-chemo benadryl and steroids and I slept.

It is such a relief to be done. Did I already mention that? It's a bright sunny day and a new morning for us with no treatments looming. Celebratory dinner with my husband planned, and a music festival tomorrow.

The only damper to the day is the need to make yet another decision. I met with the Chief Radiation Oncologist at Sloan Kettering's Westchester branch yesterday, and need to make a decision whether to accept radiation therapy over the left breast, which would be daily for six weeks. This would dramatically reduce the risk of cancer recurring in the left chest wall. But it wouldn't reduce the recurrence of the cancer in other areas, such as the liver or bones. The chemotherapy and hormone pills are more systemic, the radiation is a localized procedure.

I can't help but think that radiation would be overkill. And any medical intervention has its own risks and side effects. The lung, for instance, would get a dose of radiation that it does not need. There's a 10% risk of lung inflammation, called pneumonitis. With my history, he wants to talk to my regular oncologist and get back to me.

As for me, I'm mentally exhausted from chemo. I realize that we still have a few more hurdles, but all seem jumpable.

I'm ready to jump start my life, to celebrate and to get back to running and thinking about my work and the future. So unless cancer recurrence in the chest wall is a "real" risk, we will skip radiation and knock on a lot of wood.

Thursday, May 26, 2011

Social studies test

My eight year old daughter told us that she had a social studies exam yesterday and got an 82 on it. My husband's response: "excellent, nice job." And mine: "82? That's good but what questions did you get wrong?" To which the husband said "that's terrible! don't say that to her."

Who knew we disagreed so sharply on child-rearing? And I am not criticizing my husband; he is one of the most loving, involved daddies there could be. But we have a different approach. Complete positive reinforcement versus limiting positive reinforcement where the child doesn't perform as well as you would hope.

This conflict made me think of Amy Chua, the Chinese Mother who wrote Battle Hymn of the Tiger Mother. She wrote about how Chinese mothers are tough and focused on achievement. She does not let her children have fun until all work is done. And work must be done perfectly. There is no positive reinforcement for imperfect performance and grades less than A.

That seems rather extreme. And it is sure to lead to some very unhappy childhood memories. On the other hand, we have to encourage kids to set high goals for themselves if they're going to do well in life. So I'm trying to figure out how to do that, without being the drill sergeant in the house.

So back to the social studies test. Emily brought it home and we looked at it with her. It turns out that the questions she got wrong were questions that she knew how to answer once she focused on them. By trying to finish the test quickly, she made mistakes and was careless. I think that she was confident, once we reviewed the test, that she knew the answers to the other 18%.

I think that it is perfectly fine to respond to an 82 score with the message that "it is good but you can do better." I want my kids to be ambitious and have goals that are heard to reach, but also to have the confidence that they can reach them.

Thursday, May 19, 2011

Memory. It's a wonderful thing.

There is a strong relationship between chemotherapy and short-term memory loss. The term 'chemo brain' is already part of common lingo. An article in the New York Times from April 29, 2007 discussed the reality of chemo brain. The article said that: "Virtually all cancer survivors who have had toxic treatments like chemotherapy experience short-term memory loss and difficulty concentrating during and shortly afterward, experts say."

Fortunately, the words "during and shortly afterward" indicate that the problem could be resolved in a short period for most people.

In the meantime, memory loss is becoming all too frequent in the life of this breast cancer survivor. For the joy of sharing, let me provide some examples. I have no shame.

First sign of memory loss appears to be leaving the car door open. Yesterday, I left my passenger side door wide open in a public parking lot while I went into work, after opening it to retrieve files. Not unlocked, wide open. Somehow between the act of opening the passenger side door, grabbing the files, and walking to my office, I forgot to turn around and push the door closed. I discovered the open door three hours later as I went out to lunch.

Two weeks ago, I left my driver's side door wide open when I went into the Thruway Supermarket in a dicey neighborhood. Again, not unlocked, but wide open, inviting the world in. My stomach dropped when I came back out with a cartload of groceries. I thought someone had broken in, certainly intending to steal my overpriced racing bike, which was laying unlocked on the folded back seats, beckoning thieves for a free ride. My stomach dropped again when I saw the bicycle laying on the seats, untouched, as the reality of situation hit me. Apparently, the thrill of purchasing groceries caused some cerebral interruption.

Losing things also seems like a clear example of memory loss. I have no memory of placing my brother's check (we were splitting a gift) or my ipod in my suit jacket. Yet they were hopelessly lost for a week, leading me to scour ebay for the cost of another ipod and suggesting to my brother that he cancel the check. Fortunately before any steps toward replacement were taken, both the check and the ipod tumbled out of the pocket while I was getting dressed for work. Did I even wear that jacket last week? I have no idea.

These lapses of memory and judgment, and possibly good solid common sense, are, alarming. I feel like an Alzheimer's victim who is constantly surprised to come across evidence of having engaged in erratic behavior.

Apparently, short-term memory loss that many people seem to suffer could be attributed both to high dose chemotherapy and to estrogen loss from premature menopause or estrogen suppressors that breast cancer patients often take after chemotherapy ends. Either way, it is a phenomena that is reportedly universal. It is worth looking into a little further and asking the oncologist how to prevent or deal with weekly memory lapses. Unfortunately, I keep forgetting to ask her.

Sunday, April 24, 2011

Taxol, #4 down, three to go

After surviving through the epirubicen chemotherapy that wreaked havoc with my throat and general good health, I was relieved to be done and to move onto Taxol. Taxol's biggest side effect is peripheral nerve damage, which is normally temporary but can be permanent.

After finished one of four Taxols, my nerves are intact. Fingers can still button, feet can still run. No pins and needles, no pains or aches. Despite the lingering cough that seems to have found a permanent resting place in my throat, and is resulting in my large contribution to the Halls corporation (as in lozenges), the negative side effects attributed to Taxol are between nonexistent to minimal. I just might sail through this round.

As for positive side effects, there are a few. Lingering hairs on my arms, legs, inside nose, and pretty much everywhere else, have dropped off. Who needs them anyway? My razor budget has been slashed. Any teeth plaque I had? Gone. Pimples? Gone. So you can see, not all side effects are negative in my book. There are benefits to chemotherapy, and I embrace every last one. When this is done, I might just miss these fringe benefits.

On another subject, we have just been informed that our little girl, turning seven in two months, can read. I don't mean read a simple sentence or write her name, but I mean she can read a book with more words than pictures. She has been so excited about her new skill, that every night she has chosen to read a chapter to US rather than the other way around. Her favorite choice is the Junie B. Jones series. This is a turning point. Reading is power.



My other one, 8-1/2 years old, surprised us with her adventurous spirit this weekend in Montreal, by venturing out of her macaroni and cheese comfort zone, to test her tastebuds with some Lebanese food and some Tibetan food. The Tibetan food was not all that different from Chinese food, which she is accustomed to, but the sauces were more subtle. The waitress took a second look at Emily as she expertly maneuvered her chop sticks to eat the steamed dumplings and noodles. Seems like yesterday she was using the children's chopsticks with the hinges, now she puts me to shame with how adept she is with two sticks.

Monday, April 18, 2011

Life is good

To my one "follower" and tens of readers: please be notified that life is good again in the Gardiner house. My girls had a great time at their grandpa and grandma's house, playing with their new paint kit from Aunt Sedell. They actually wanted to stay an extra night. They came home laughing and chatting away, loaded with pizza. Here is a photo of them, trying on the funky hats that my stepmother's friend knitted for me.



As for me, my throat pain miraculously went away after six weeks. Work is great. I have a lot of challenging cases to handle at work, and accomplished a lot this week so far, which only includes Monday because Tuesday is chemo day. I did something new that I intend to repeat: concentrated on my work instead of paying bills, internet 'research,' checking the latest news and weather, and chatting with my lovely colleagues. I just might try this again. It's a good feeling to be productive for a full eight hours and earn my salary with some honor.

I picked up some Montreal travel guides for our upcoming trip, which was another happy moment of the day.

I signed up for a summer triathlon, a sign of feeling healthy. Ok, so I wasn't that productive at work for the full eight hours. But what's ten minutes of wasted time in the big scheme of things?

Tuesday is chemo day #4 out of 7. I am armed with natural supplements that I need to take in the morning and evening to combat the side effects of Taxol, namely neuropathy, and pat myself on the back for that.

I had to talk to a naturopath (at Sloan Kettering he's called an 'integrative medicine specialist') to get the information. My oncologist doesn't offer any advice about supplements so I'm jumping in this game mid-stream. Sloan Kettering is great for conventional medicine and prescription drugs, but not so strong in recommending natural supplements. I personally like to have feeling in my fingers and toes so researched natural supplements, and gathered advice from the naturopath. So I feel full of information and ready to tackle what this Taxol brings me.

Saturday, April 16, 2011

Pain in the neck

The subject of this post is "Pain." Actually, more specifically, it is about how you learn to tolerate pain with the more medical procedures you go through. And you survive intact because the pain is short-term. A certain amount of pain is the price to pay for getting the medical condition in the first place. And it's tolerable because you know it's for your own good.

I thought of this subject while I had a long black tube placed in my nose on Friday, and extended into my my throat, where the otolaryngologist was able to snap pictures of the throat ulcer that he found down there.

I was wondering if the nose hose was any worse than the time the inexperienced nurse tried to put an IV in my arm at Vassar Hospital and had to dig in with the needle and twist and move it until she located the vein?

Or was it worse than the time the physician injected the burning, radioactive dye into my breasts - the ones I used to have - so that the surgeon could find the lymph nodes during surgery?

My purpose of this post is not to brag about the pain I have endured like I am some military hero shot on the battlefield while defending my troups. But just to marvel over the amount of pain and discomfort that you learn to endure, especially when you trust that it is meant to treat and cure you, and not being used just to satisfy a physician's sadistic impulse.

You learn to sit still and be good. To think of breathing, in and out, in and out, and wonder if the doctor ever went through it himself. You realize that most medical procedures causing pain are over in less than a minute, and you count the seconds until this one is done. Because you know that if you dare move, the doctor will have to do it all over again. And once is more than enough.

Anyone can grin and bear it for a minute. But while my pain tolerance has improved, it is not limitless. In fact, as I will tell the otolaryngologist on Monday during my throat biopsy, if this pain is to last any longer than a minute, anesthesia better be involved.

Thursday, April 7, 2011

Having a goal is the key

The key to surviving chemo with your sanity intact is realizing that there will be life after chemotherapy that does not involve cancer. At least this is true for me, as surgery is already done and I am not aware of any lingering tumors.

Choosing a goal or planning an event for when chemotherapy is done is proof positive that treatment is only temporary.

For me, one event that will sail me through chemo is our planned trip to the Caribbean in July. Visions of relaxing in a hammock in my rain forest villa five minutes from the beach in St Lucia is what will bring me through chemotherapy. This trip will be the reward. While immersed in health concerns, the thought of not having those health concerns within three short months is so wonderful it is almost unfathomable. I am giddy with excitement about this trip. Each infusion will bring me closer to my hammock.

Saturday, April 2, 2011

Insurance and the Preexisting Condition

The fear of a loss of insurance coverage is heightened for anyone who develops that "preexisting condition," to use insurance jargon. If you have reliable, generous health insurance, particularly if it's paid for by your employer, you are golden. But lose that job, and that insurance if you can't cover the COBRA payments, and you are left in a sea of panic.

I am fortunately in the former camp and, after nine years on the job, I have job security. In my current position, I am covered and pay no premiums. Optical and dental coverage too. More than that, my two daughters and husband are also covered 100% by my government employer and we pay a minimal monthly amount for them to have optical and dental coverage.

Without that job, I would be up a creek due to the last three months alone. According to my Explanation of Benefit forms that we receive in the mail every day, my insurance carrier (United Healthcare) has already shelled out somewhere around $75,000 since I was diagnosed on December 15, 2010. That includes consultations, biopsy, MRIs, mammograms, PET Scan, then surgery, reconstruction, chemotherapy, biweekly blood work.

But after nine years in one government position, I realize that I will always be contemplating other career opportunities. That's just the way I am. So, with that thought in mind, and cancer on my records, I started researching the whole health insurance issue.

Should I leave my position, I will either have to get hired by a firm or agency that provides family health insurance, or I will work for myself, and need to apply for a new insurance plan. The problem here is that insurers are allowed to, and routinely do, reject applicants due to preexisting conditions.

A reported 57.2 million people younger than 65 have at least 1 preexisting condition that could mean insurance denial. And cancer is one of the biggest preexisting condition that leads to insurance coverage rejections. Also, there are a whole host of other preexisting conditions that also mean a "no thank you" letter from an insurer, from multiple sclerosis, chronic back injuries, to diabetes.

But, you might ask, what about the whole Obama healthcare plan? Didn't that eliminate the right of insurers to reject applicants pre-existing conditions?

Yes and no. Importantly, the restriction goes into effect in 2014. It is not in effect today, tomorrow, next year, or the year after that. And it will not go into effect in 2014 if the health care bill is amended to eliminate that benefit. Further, the insurers will always have the right to increase charges for pre-existing conditions to a point where insurance is absolutely unaffordable to most people.

So Congress has given individual states the optional opportunity to create a plan to bridge the gap between 2011 and 2014, for those who are residents of those States and have preexisting conditions. I looked up New York's plan, since that is where I live, and was pleased to see there is a plan, but shocked to see how unreasonably inadequate the bridge plan is.

To qualify for a bridge plan in the States that have adopted such plans, according to Federal laws, you need to meet four requirements. You must (1) be a legal U.S. resident; (2) be a resident of that state; (3) have a preexisting medical condition - and be able to prove that you were denied insurance coverage because of it by production of a rejection letter; and (4) not have had health care coverage for the last six months. Then you are eligible for a state-sponsored individual plan.

Note that meeting these requirements. only provides individual coverage - that is after you pay the first $5950 per year of benefits, then your coverage kicks in. You still need to purchase extra insurance for spouse and dependants.

Though we are on the right track, this fourth requirement is offensive on so many levels. It could literally result in your death. It means postponing treatment and diagnosis for six months. Anyone with a preexisting condition needs ongoing health care, not a six month break.

I cannot say enough to explain my distress at this requirement, along with the financial requirements. It's not that I need this bridge coverage right now, but someday I might, and there are millions of people who do need coverage and can't get it.

I read the fears of women on the breastcancer.org website, who post about their lack or loss of health insurance. What can they do? Who can afford to pay upwards of $75,000 in a three month time span for necessary healthcare when diagnosed with cancer? And most of those who need the bridge coverage are either unemployed or self-employed.

As I said, for now I'm golden. But the possibility of losing that status is real, and it is frightening.

Tuesday, March 29, 2011

Running for your life

The realization that treatment may result in irreversible harm is a fact of life for cancer patients receiving chemotherapy. Many of the chemotherapy drugs, because of their cell-killing qualities, result in side effects that do not disappear when the drug is no longer administered.

The chemo regime I'm on involves four doses of Epirubicen, part of a class of drugs called anthracyclines. The anthracyclines are very effective against breast cancer, but are known to be "cardiotoxic." What that means is that a percentage of people treated with these drugs die of congestive heart failure. Some studies show that almost half of the patients exposed to anthracyclines show cardiac abnormalities 10 to 20 years after the original infusion, including approximately 5% who develop congestive heart failure because of dysfunction of the left ventricle.

The most vulnerable to suffer from heart failure are the elderly, diabetic, and those with pre-existing heart problems. Though I do not fit into those categories, the high percentage of patients who suffer from anthracycline damage is a cause for concern.

Still, the use of anthracyclines, I am told, will reduce my risk of recurrence of the breast cancer from 35% to 20%. Additional therapy from 5-years administration of a pill called an "aromatase inhibitor" which inhibits the production of estrogen will further reduce the percentage to 10%.

Clearly there is a compelling need to go through chemotherapy. Though I can't help but think that if the cancer won't kill you, it is ironic that the treatment will.

It is one of the choices that I, as a cancer patient, need to make. And I have very little control over the dosage given to me of a certain drug, or the drugs that are offered. Either I consent to the recommended treatment or not. Weighing the risks, it is clear that future heart problems may not be as much of a concern to a healthy person like myself than the risk of having this breast cancer return. After a bilateral mastectomy, if it returns, it will show up somewhere else in the body, such as the bones, liver or lungs. That is not a possibility I want to risk. Going through this as a Stage II once is bad enough. Going through this a second time as a Stage III or IV would be devastating.

So I move forward with my anthracycline therapy, the third one to be administered tomorrow, March 31.

Fortunately I have come across one identifiable step I can take to protect my heart. Running. Endurance exercise. An oncologist I spoke to, told me that the Rocky Mountain Cancer Rehabilitation Institute in Colorado had overseen some studies on rats concerning the impact of exercise on anthracycline therapy.

I got on the internet and searched for those studies and was able find detailed abstracts. The studies show that the rats who exercised during chemotherapy had, in the short run at least, healthier hearts. In one study, the rats were forced to run on a treadmill for ten weeks before chemotherapy. Their heart function was tested four weeks after chemotherapy. The result: the rate of heart malfunction was higher in the control group made up of rats who were sedentary couch potatoes. The runners were healthier.

At least half a dozen studies were done. Some with five weeks exercise, some with five days exercise, some with a single burst of exercise before chemotherapy. The result of every study shows that the hearts of running rats showed less damage than the sedentary rats

So, finally, there is something to this process I can control. I am a runner, I can run. Pushing myself aerobically during chemotherapy is at least one way I can protect myself from damage caused by the treatment that is supposed to help me.

Tuesday, March 22, 2011

The Skullcap to Beat all Skullcaps

As I rapidly lose my hair, the realization that a good head covering will be needed, and immediately, clouds my mind. It interferes with my better judgment. I panic. When your hair is falling out in 50-strand clumps, you need to act fast. There's no time for dilly-dallying. Either you are going to enter the world ready to handle the chill of the day as a bald woman in style, or you are going to be stuck in a cheap synthetic wig until you do.

There is no dearth of options. And the challenge is finding something that fits into an office environment, that you can wear with a suit and not look like a biker chick. Or a boy.

First thought, especially to the naive, is to buy a scarf. Wouldn't that be the easy choice? A simple large square scarf that folded up into an African turban. So I ran down to the local head shop in New Paltz and bought myself a few bandannas to try out. Large enough for a head, or so it seemed. But folding those things to fit on the head was near impossible without sewing it into my scalp. I tried folding into a triangle, then tying over the head, being careful to tuck the triangle into the knots. Perfect from the front. Turning around, checking the back, and there, in all its glory, was a 3-inch sneak peek of my bald, white naked scalp. Oh no! This would not do.

The next scarf I purchased was large, beautiful, silky. Perfect to hide my naked scalp in a cool soft mound of silkiness. The problem here: it's a fine line between looking fashionable, and Amish. A very fine line indeed. Not that there's anything wrong with it. If you're Amish, which I am not. I like to let it all hang out, not in. Hiding in a large head scarf would make me stand out more, like a lady in a red dress at a funeral.

So I weighed my options without completely giving up on scarves. I am not that creative with scarves, and can't just drape it over my head casually and hit the town without fear of it unraveling at my feet at the most inoportune moment.

The thought of having a hat hit me. Not a regular hat, but a do-rag. Or a skullcap or beanie, whatever you want to call it. Heck, maybe a yarmulke will do. Anything that does not need advanced sailing skills to get the perfect knot. I need something low maintenance and colorful. I scoured the web. Ordered a few different ones from different websites. Finally found the selection to beat all sections at www.sparklingearth.com with all sorts of fabrics and colors.

A few days later, I saw that padded envelope package in my mailbox. With anxious anticipation, I ripped it open at the mailbox. My four new do-rags tumbled onto the driveway. Red with flowers, turquoise and black bandanna fabric with rhinestones, brownish with dots, southwestern fabric. I picked up the rhinestoned fabric, opened it up, ran into the house and took off my baseball cap, placing my doo-rag on my very round fuzzy head, tying the ties in the back. There was nothing to adjust, it fit just perfectly perched on top. Shook the head back and forth, up and down, and the hat stayed in its place.

Finally, simple problem resolved.

Sunday, March 20, 2011

6 year old cutie pie



Watching my little girl Sami reading adventures of Frog and Toad to me. She is so beautiful, happy, funny, active, caring, social, energetic, creative, original. Amazing to think that she shares my genes and my husband's genes. We are so lucky to raise such an adorably wonderful little girl.
I love the other one to death too, just that she's not here today.

Saturday, March 19, 2011

Banished..

The hard thing about normal daily life during chemotherapy is that your white blood cell count goes down. And when those white blood cells disappear, you can't fight easy infections and they get worse and worse.

Case in point: during my first chemo cycle, I developed a little sore throat on my third day post chemo. Honey, tea, gargling with salt water, nothing worked. It got so bad that I couldn't swallow water without serious pain. After 3 sleepless nights and fever that wouldn't let up, I broke down and called the oncologist, who directed me to the hospital for intravenous antibiotics and blood count tests. Then 10 days of oral clindamycin, and a one week delay of my chemo cycle was the consequence.
No I do not want to relive that horrible experience. The sore throat caused more distress than the cancer, to be honest.

So Sami (my 6 year old) and I are banished while my hubby and other daughter battle out another bad head cold. A day in NYC watching a Martha Graham dance troupe performance was hardly painful. And two days of rest and relaxation at dad's home in Connecticut is very peaceful. But it would be nice to be back home, I can't lie.

Tuesday, March 15, 2011

The Buzz Cut

Tuesday March 15, 2011

Who knew that losing hair can be so messy? After approximately ten days to two weeks of receiving certain chemotherapies, you start to lose your hair. Once it falls out, it falls out rapidly. Not in clumps, but in large amounts of strands that shed on pillows during sleep. It covers your body during showers. Rubbing your palm against the head will inevitably result in a fistfull of hair strands.

At some point you need to do something about it. Losing your hair is just plain messy. And the scalp hurts. It's as if the hair follicles have had enough and they just want to push the hair out. Your head feels sensitive, and short hair starts to stand up straight before falling out.

My decision at this point but to take some action and just get rid of the problem. So after days and nights of thinking of the inevitable, I decided that shaving is the answer. And I couldn't do it myself. There was too much hair left, and the thought of nicking my head with a razor and having to deal with blood as well as baldness would be too much to handle.

So, on on the spur of the moment while driving back to work after I meeting, I ran into Ann's Hair Salon and Manicure in Goshen New York. I had never been in this old-fashioned salon in a little building shared with a plumbing contractor. It was tucked away on a one-way street, and the sign outside said in fading light blue letters, in cursive, "Ann's Hair Salon." The fact that none of my colleagues or friends would likely be walking in, was a big factor in my selection of this hair salon.

I saw a woman with greyish-blue hair under one of those large hairdryers from the 1960's that covers your whole head. A woman in her late 60's, apparently the owner, was cutting the few strands of hair left over on the scalp of a man who was virtually bald. That seemed to be very similar to the haircut I sought. When I told Ann my predicament, she agreed to stay overtime for me since the shop closed in five minutes.

While waiting, I browsed her bulletin board. In addition to photos of lots of little children, surely her grandchildren, there was a 1996 certificate from American Cancer Society thanking the store for its donations. On the bookshelves, among the trashy romance novels, there were brochures displayed for a breast cancer walk, and an American Cancer Society wig catalog. A coincidence that this was the storeowner’s chosen cause, or fate?

She took me in a chair, and gave me a brochure from TLC, the American Cancer Society’s brochure with cheap wigs and head coverings for sale, and gave me a business card from the organization that teaches cancer patients how to look good and feel better during treatment. Actually, it really is called “Look Good Feel Better.”

She offered to bring me in the back room. I looked around and saw the only other customer was the elderly woman with greyish blue hair at that point. She eyed me curiously, while I eyed her back. Here is fine, I said. Low odds that a colleague would come bounding in this little old lady salon at 4pm on a Tuesday.

She then took my glasses off and started shaving my round itchy head. I couldn’t look. Thank goodness I can’t see a thing without my glasses, and she turned the chair so I was not facing the mirror.


Up to now, I felt at peace with the idea of losing my hair, and actually had looked forward to wearing my scarves and getting it over with. But once the buzzer started doing its job, I was overcome with emotion - well almost. Last thing I wanted to do was cry in the barber chair. So I held my ground.

When she was done, I got my wallet. She waved her hand at my wallet and said “this one’s on me.” I gave her a big hug and left. . She made a potentially traumatic experience very painless.

So now I have a Sinead O’Connor hairdo. Looking in the mirror, you can suddenly see features, such as cheekbones and ears and nose. Eyebrows. Glasses. I don’t look half bad. Then again I don’t look half good. But I can live with it. Just hope that people around me don’t start thinking I’m sick. Because I’m not.

Thursday, February 24, 2011

Chemo #1 - Here we go!

DAY ONE February 24. First day. My friend Antoinette picks me up at 7:45 am for the "big day." The day when I get all sorts of cell-killing toxins injected into my veins.

We head over to Sloan Kettering for the big day. Not as dramatic as expected. All 8 chairs were taken but the room was spacious, overlooking the Hudson River. Everyone seemed to have company. The room was quiet, everyone resting in their easy chair with a drip attached to the IV line, reading or reading emails. Are they twittering? I send my dad an email from my ipod to get into the spirit. "Hi dad I'm at chemo now. So far so good."

Miranda the nurse was with me the whole time. She is a 20-something very cheerful nurse who told me about all the places she traveled for nursing gigs, from Alaska to St. Thomas. She was so relaxed and happy, she could have been putting a bandaid on my booboo.

She first gently put in the IV line. Then flushed me with saline solution, then flushed me with some anti-nausea medication (possibly Aloxi) then came over and suggested I take my anti-nausea pill. Sounded like a good idea. Then the “real” stuff. She approached with four large turkey basters with red liquid that she said she had to manually put into the IV line. If it touches the skin it could cause 4th degree burns. Then half hour later, the clear liquid Cytoxin, the other chemotherapy drug, was hung on a rack for a ½ hour of dripping into my veins. Antoinette ate pretzels and chatting about vacations. Nothing hurt.

We headed home at 1pm. At 4pm I started to get nauseous and at 5pm had a Wolfgang Puck Chicken and Dumpling soup, made with some sort of creamy base. Big Mistake. Never doing that again. After that the nausea set in. It got worse. And worse. And worse. I lay on the bathroom floor moaning for hours. I lost track of time. Ray got a bucket for me. Emily peeked in and looked at me with concerned pity. "Don't worry I'm fine" I told her. I'm a big fat liar.

The nurse called to find out how I was. I told her the honest to goodness truth. Then she reminded me I have another anti-nausea med to take. I do? I grabbed the black medication kit and found it. Aha! Took a pill. Finally the nausea subsided and I made it to bed.

Only 7 more to go. It can only get better.