Does Sugar Feed Cancer? Yes, but . . .

For the most part I was able to forget that cancer is part of my life during this 2018 holiday season. Unfortunately, I still had to go to infusion on December 22rd, so I could not NOT think about it on that day. As I sat in “the chair”, I listened to a podcast and decided then I would share it here.

bing.com

Untruths bandied about in our society capturing the attention of intelligent or educated individuals bother me. One particular cringe-worthy statement in the cancer community is “Sugar Feeds Cancer”. These three words are truthful, but someone thinking that giving up sodas and sugar in your coffee will stop cancer is a failure to understand basic cellular and food science. Giving up all sugar is nutritionally inadvisable.

Here is where I hand-off the science behind sugar and our bodies to Julie Langford, thecancerdietitian, who is educated in the field of nutrition. One step of her education landed her at UNC-CH where I receive treatment. I was surprised to learn she now lives in a city in North Carolina close to where I grew up. I think you will find her podcast about sugar and cancer easy to understand and wonderfully educational. She is dedicated to dispelling the myths in our culture concerning nutrition. I am a fan.

Before I leave you, I want you to keep these things in mind:
1. All cells need fuel, healthy and abnormal.
2. Insulin from our pancreas opens the door for glucose to enter a cell.
3. Glucose (sugar) is fuel for our cells. Sugar comes in different forms. Simple sugars are: glucose, dextrose, galactose, sucrose (in the body as fructose and glucose). More complex include: fructose, maltose, lactose.
4. Carbohydrates are made of simple and complex sugars along with starches and fiber. Some carbohydrates have nutrients (fruits, veggies, grains); plain sugar—a simple carbohydrate—does not.
5. Our cells cannot pick and chose which sugars to use.
6. If you eliminate glucose, the body will have to work extra hard to make the glucose that it needs to function. If no glucose, the body will break down proteins from muscle.
7. Proteins are made of amino acids. Amino acids can be broken down into glucose for use by the body when necessary.
8. If a person does not get enough nutrients, the immune system will be compromised and cannot protect the body from bad bacteria and viruses.

Hope you enjoy her Podcast. The Cancer Dietitian

And, one more thing since it is December 31st, the last day of 2018 . . .

Happy New Year Everyone!!

Just Pretending I am Normal

If it were not for the help of modern medicine, I would not have celebrated my 54th birthday. 54! I have lived longer than my parents who died at 52 and 53. No rationale to explain why it was important to me to outlive them, but it was.

I made it passed 54 birthdays. I have been able to witness my face change as the gravity of our earth pulls without mercy causing me to agree that plastic surgery might not be such an over-the-top procedure of self-consumed vanity after all.

My birthday came without a lot of fanfare, but to me it was the greatest of days. And with the greatest of days come the other days where I am tired of worrying about dying. Every day it seems in social media someone has died. Poof! They are extinguished from existence. We are all so fragile.

Death is final. It is not like losing a job where you get to pull yourself together and start fresh and find an employer who sees something in you that others did not.

A person dying cannot say, “Hold up, I need a few more days”. Death comes and overtakes you without an apology—not that it can give one—and without any concern for what you needed to finish before your heart no longer beats.

I know death is all part of the circle of life and all that soft language that makes death a lighter subject to talk about. But, the unfairness of how some get to live into their 90’s and others don’t get to see their first birthday is simply extreme no matter what kind of reason some people try to attach to it.

Knowing I am dying—not because I am alive but because I have a terminal illness, does make me think sometimes that my exercise routine that I started in August is a waste of time. I mean, I could be doing something else with that time, but I keep doing it anyway for the “just in case I keep living” scenario or maybe it is partly because I want to pretend I am fine. 

Lately, the metastatic social groups on Facebook I follow have caused me to want to stop looking at my newsfeed. All the sad stories of struggle and sadness can be overwhelming. Since 2013, I have consumed as much information as I could about my disease, learning from others in my desire to keep hope alive. In the beginning I jumped right in and embraced those stories and let them be a part of my life, but I have noticed a change in me. I am finding I want to turn it off. Is five and 1/2 years of letting MBC be at the forefront of my thoughts simply too long? Have I reached the so-called “breaking point” where it is all more than I can handle? I have been slowly pulling away from it, no longer stopping for those stories of people needing help, needing someone to hear them. I feel guilty for being selfish in my needs when their needs are as important as mine.  Yet, I am finding I want to forget about cancer, pretend I am the old Lisa. I want to not be living day to day worrying about my every ache and pain, fearing that my coughing or my recent lower and upper back pain is my disease saying, “Ha ha, you are really screwed now”.

Over the last few months, I have been getting the momentary sense that I am paralyzed. I can’t move because I feel unenthusiastic or unmotivated to do much of anything—stupid thoughts of death creeping in to steal my joy, my sense of worth. It is short-lived, but I know that if it takes hold I won’t be able to find my way out. So I switch gears making myself get up and get going. I feel like I am walking too close to the edge of despair where a person finds they are drowning and can’t save themselves, a place I have never been and don’t ever want to be. So, I will find the comfort I need through pretending I am fine because sometimes a person needs a vacation from cancer.

Staying busy has always helped lessen the negative thoughts that go with my situation. So that is what I intend to do. Soon the decorations will come down from the attic and adorn my home, all my children will be physically here, and I will see another Christmas—my 6th since my induction into the metastatic world. I will enjoy every minute of it. For the next month, I am going to do my best to close the door on my disease, so if you don’t hear from me in December, don’t worry, I am just pretending I am normal.

Remembering Diagnosis #1 and #2

One thing is certain: I don’t need October to remind me of breast cancer. It is in my mind when I wake up in the morning, throughout the day, and in my mind when I fall asleep at night. But this October I got the added bonus of TaTa Tuesdays and check your “BOO”bies. To say those cutesy names annoy me would be a gross understatement.

Today I say goodbye to October. Tomorrow is hello to November! I get to prepare for birthday #54! Truly excited for that day.

On this final day of Breast Cancer Awareness Month, I will leave you with two entries that I found while recently looking through my old journal. I was a much younger me (13 years ago), so full of hope that I would be okay after my first and second diagnoses before things dramatically changed in 2013. Today, I am still hopeful.  After all, hope is all I have when it comes to my tomorrows. That is true for all of us, cancer or not.

From My Journal:
April 25, 2005. (Before I went into surgery)
Words to my children--ages 10, 10, 9, 2.

I’m writing now so you don’t forget that my whole life has been worth it because of you.
I write this on the following pages so you know what I experienced. Maybe it will help you understand what happened to me if I am not here to describe it to you.

Last June I experienced some pain just above my areola on my right breast. The pain was a pinching sensation that would come and go. The feel of my breast was not lumpy, but firm on the top. (I had an enlarged lymph node too.) A mammogram and an ultra-sound were clear. I was told it was most likely caffeine causing my pain. I went on with life until a woman told me about her cancer diagnosis and the bi-lateral mastectomy that occurred because of it made me wonder. A week or so later the pain started occurring again—the same pinching sensation almost like my breast was beginning to let-down milk for a nursing baby. I began feeling for lumps. Still had the same firmness as before. I did feel a little BB sized knot in the area of pain. I pressed and to my astonishment some milky fluid came out of an opening in my nipple. The fluid was yellowish, greenish and thick and a little sticky.

I made the appointment. with my doctor for Monday March 28th. (2005) She sent me to get an ultra sound and a mammogram--again. Those were scheduled for Thursday March 31st. She also suggested I see a breast surgeon. On Monday, April 4th, I was told the results were clear including the lymph node I was worried about. The next day I saw the breast surgeon. She was quite concerned about the “mass” located at 12 o’clock on my right breast. A biopsy was done in her office. Because the hole from which the tissue was taken wouldn’t stop draining, (the same yellowish, sticky substance) the doctor seemed relieved thinking it might be a delayed mastitis. (Really, though? It is 2005. My last child was born 2 years ago.) It drained until 3 am. On Wednesday, she called to say that there were atypical cells found and that the biopsy would be sent to a lab for further evaluation. I could do nothing but wait.

So we went to visit my sisters in Kentucky as planned. Just before we were going into Mammoth Cave the call came from the breast surgeon. Greg fumbled with the phone. The call was dropped as the cell signal was weak. I tried to call her back but nothing. We drove around the parking lot until we had a signal. Through my tears I somehow heard I had Ductal Carcinoma in Situ—cancer in the ducts of my breast--and that I would have to have a mastectomy. She said the diagnosis wasn’t 100% for sure, but she felt confident.

After returning from our trip, on the April 14th, I went in for a 2nd biopsy. More tissue was taken and after 5:00 that day she called to confirm the diagnosis.

On Monday the 18th, I went to see a plastic surgeon. Tuesday I went back to see the breast surgeon. She went over the amount of tissue she was going to take. The plastic surgeon would follow behind her and insert the expanders.

Friday, I was informed that surgery would be performed April 29th. (Things moved quickly.)

All kinds of emotions flow through you with this type of news. Mostly you cry because you don’t want to die and not see your kids grow-up. That is my biggest fear. Other people seem concerned about re-construction. All I care about right now is waking up from the surgery, going home and recovering. I am so scared and worried that cancer cells will be in my lymph node, and I will have to go through chemotherapy. So be it if I don’t have breasts. All I want is my life to spend with my family. I am so lucky to have you. Your daddy has given me so much. Sometimes I don’t tell him enough how much I love him. He has given me everything I have ever wanted or needed.

I love you all.

Dec 31, 2010 (Diagnosis #2 Stage 1, November 2009)

It is about 8 minutes till 12 midnight on New Year’s Eve. This year has been the hardest of my life due to chemo, radiation and Herceptin for a year. My treatments ended Dec 16th with my final Herceptin treatment. On Dec 17th, my port was removed. I am grateful it is over. PET scan showed no cancer!

4 minutes now to go and I am looking forward to a wonderful year. I will try to curse less, and realize that nothing is worth the kind of stress I often experience. The only times worthy of stress are due to the death of a loved one and a diagnosis that could end your own life. I will try to keep that in perspective when things go wrong in my life. 

A bad day is not a bad day when it is a day I lived.

3 seconds. Happy New Year! It is here!

Hurricane!

Words entering ears

Grabbing and shaking

Is this real?

Preparations take place

Direct hit?

Complete miss?

Anxiety abounds

Hours turn to days

Words confirm the worst

Impending doom

Becoming reality

Rain falls harder

Along with the tears

Winds blow stronger

Taking all sense of control

The storm quiets

Destruction seen

Trees no longer standing

Power gone

Trees along the fence at front of our property

Grass covered land

Now holding water

Rising higher and higher

Will it stop? 

The back of our house in the aftermath of the storm

Shingles of protection

Winds ripping away

Roof no longer defending

All things underneath

My husband, stopping the leaks

Rain and wind pounding

Changing the structure

Never the same

Effects now visible

Attic items moved

Away from the water

Dripping . . . dripping

A foot unexpectedly

Stepping

Through a wet ceiling

Not falling

Into the the room below

My entire leg fell through. Luckily the rest of me did not.

Mold growing and spreading

Insurance claims

Repairing, rebuilding

Takes time

Our garage ceiling

More destruction follows

Rivers incapable of containing the swell

Breaching the banks

Holland Shelter Restaurant in Pender County

Killing people and livestock 

Destroying homes

Leaving people and pets

Displaced, now homeless

Hungry and wet

Posted on Facebook by Pender County Emergency Management

In the aftermath

Harm continues . . .

Mosquitoes breeding exponentially

Larvae becoming pupae

Emerging from watery wombs

Relentlessly attacking

Upon opening the door

Forcing refuge

Away from the swarm

Hurricane gone

Help arriving from everywhere!

Bringing calming relief

Thankful for all

Pender County Emergency Management Posting

Is this story about hurricanes or cancer

I wonder?

Thick with similarities 

The winds of uncertainty

Never stop blowing

Cells 

Growing into a frenzy

Destroying, killing

Treatments flowing through blood

Changing, damaging

The body 

The onslaught of either

Resembling watery roadways

Impossible to maneuver

Causing cancelled infusions

Medications delayed
Possible progression
Potential for death

As with a hurricane

Time moves forward

Coping mechanisms kick-in

The winds of acceptance

Ebbing and flowing

Depending

For some

Unfortunately

Stormy conditions remain

Long after its landing

Leaving us searching

For that showcase of hope

In a beautiful rainbow

That the flooding will stop

Clouds moving on

The sun peeking through

Shining life into all

Once again

My front yard before hurricanes Matthew and Florence destroyed the trees along our fence.

Scan News!

For every scan I go through, I practice the same routine of how I will handle bad news. Today, all that practicing wasn’t necessary. I got great news!

Next scan in another 6 months.

Yea! I am pretty flipping happy. 

Awareness and Early Detection Saving Lives

Life for me is busy. That is a good thing; it means I am doing well, though it leaves me little time to write about topics that are important to me and post them to this blog. Today, somehow, I found the time.

Also, fingers crossed, scan is Monday. So hard not to think about that cause it is getting closer and closer and . . .

Is Awareness and Early Detection Useless?

The controversy of awareness and early detection concerning its usefulness or uselessness in saving lives is a topic I have been thinking about for years. I have found I am having trouble committing to a firm stance on which side I am on because my knowledge is lacking and the facts are not at my finger tips since I am not a breast cancer researcher or a breast cancer specialist. But, you will see in this post that I am leaning more in one direction than the other. Please tell me where I am wrong if you care to chime in.

For years I have heard metastatic patients say that awareness and early detection are useless in saving lives because it doesn’t prevent the typically agreed upon figure of 20 to 30% of early-stage patients from becoming stage IV. But, that leaves me wondering about the other 70 to 80% who never progress.

I understand that people who say this are probably coming from a place of anger at their situation. Some might have been told: It was caught early! You have a 98% change (if stage I) that it will not return (sometimes this part is left out) in 5 years.

I, too, am that patient. An initial diagnosis of non-invasive stage 0 disease gave me the sense I would be fine. I had the “good" cancer, so to speak, because look how early it was caught. So, yes, I was angry when my stage 0 became stage I and when my disease progressed to stage IV.

Metastatic and early-stage patients desperately want more dollars for research into metastatic disease. I want that too. Their rallying cry, though, asking the public not to buy pink merchandise so dollars spent won't go to more awareness and early detection screening may not be in the best interest of those who will eventually be diagnosed with breast cancer.

(Oh, and yes I know, the pretty, positive, sexy pink party that is associated with these campaigns is a huge problem. And, I know the huge profits some companies and people are making because of this disease is another huge problem. But, I am not going to discuss any of that here.)

I can’t seem to get on the bandwagon yelling: enough with awareness; enough with early detection. It doesn’t work! Because I can’t find proof that it doesn’t work, for many.

Wide spread use of mammography for early detection became available in 1976; that is 42 years ago. Mammography has improved over this time period. (Though, it didn't catch mine.) In looking at the data, the number of new breast cancer cases appears to have increased probably due to an aging population and better screening technology. Also, there are concerns about over-diagnosis of non-life threatening conditions adding to the increased number of cases. Some knowledgeable people believe that unnecessary surgeries are occurring due to these ductal carcinoma in-situ cancers that will never be dangerous. I had a radiation oncologist once chuckle at my stage I diagnosis because he was in disbelief that I had a recurrence from stage 0. While true that some DCIS cancers are considered pre-cancer in some circles and may never become cancer, it is also true that researchers do not know exactly which of those will go on to become invasive and metastasize and which won’t. Unnecessary surgeries are a downside but when dealing with a “we just don’t know” scenario, I believe surgery, and perhaps additional types of treatment as well, is the right decision in these cases.

Some patients and advocates say that over the last 40 years breast cancer deaths have not decreased but instead are increasing or are at least remaining constant. On my recent visit to the SEER website, here, the trend in the rate of  new cases and deaths per 100,000 people is declining. However, the trend in the number of actual cases and deaths is increasing. (Rate is the amount of occurrences in a certain number, 100,000 in this case. Number is the number of occurrences over an entire population.) Blanket statements saying breast cancer deaths are increasing are not providing all the information. Different variables affect the results of data: aging population, changes in the size of populations, better treatments, better technology. All of that needs to be part of this discussion.

The truth is early detection is only as important as the treatments that follow. Treatments are getting better, longer remissions are happening, and I believe lives are being saved because of better treatments. As treatments continue to improve, I think early detection will become more important. When researchers find out which cancers will metastasize and kill, earlier and earlier detection techniques will continue to be important because people would want to--need to--know if they have breast cancer and if it will threaten their life. Catching it early would certainly lead to a positive outcome once better treatments are completed. Researchers just don’t know enough yet which means early detection and the treatments that follow is the best that can be offered at this time. Hopefully it is saving someone. I want to, I need to believe this is true. With that, I think abandoning the mantra of "awareness and early detection saves lives" at this point doesn’t make sense.

Awareness I think is important as well. People tend to forget or don’t pay attention. People must continue to educate by making others aware of the disease(s) and especially aware of the deadly nature of stage IV. It is no different than smoking. If people keep hearing that smoking is not good for you and could kill you, one day they may listen and quit. Young people who don’t care to listen or have had no one they love impacted by breast cancer may at some point begin to listen and benefit personally from finally becoming aware.

While some breast cancers seem to become metastatic long before a detectable tumor is found--those are definitely in the 30% figure cited as becoming metastatic after early stage—I wonder how many more would become metastatic if nothing were done in the early stages. Of course, I can't prove this but I imagine there would be a lot. And, since a large scale statistical collection of information in a registry such as SEER has only been operating since the 70's, no one can say differently because they cannot state facts.

One thing that appears evident is that present treatments are not preventing the deaths of 99% of those early-stage patients that progressed to stage IV, but treatments are helping many have longer remissions (still in treatment with no evidence of disease). I understand lead-time bias, here, is a factor, but I also know I would not be doing well today nor would others like me if not for treatment. That is progress. Also, early detection in the metastatic setting may prove for a small percentage of patients to have the potential for cure or at least really long remissions with Cyberknife radiation and with use of some newer drug treatments. In those cases early detection is crucial. I hope oncologists will start being more concerned about early detection for metastatic disease.

Unless I can be convinced otherwise, I think the conversation about awareness and early detection should continue while also adding to the conversation more emphasis on dollars spent on researching the cellular workings of breast cancer especially in metastatic disease which is proving to behave differently than early-stage disease. Research dollars must also be directed toward better treatments. All of these things must be done together: awareness, early detection, education of the complexity of breast cancer and specifically about stage IV because it kills, and of course the need for donations. All of these are important. Without each individual piece everyone loses.

Catching Up

On a trip to Chicago, Illinois this past June to see one of my daughters, I noticed my physical fitness has declined more significantly than I thought. While there, my daughter, her boyfriend, and I were sprinting to catch a train. Up the stairs they flew. Up the stairs I . . . struggled. No Chicago wind blew behind me, encouraging me, offering to help push me up those flights of stairs. The only movement of air was of my own making through the rapid exhaling and inhaling of my breathing that was not giving me an adequate supply of oxygen forcing me to slow down. My muscular legs from long ago were not there to move me quickly to my destination. My eyes watching the young, fit bodies of my hosts run ahead of me left me feeling quite alone wondering: Should I yell for them to wait? Do they realize I am not right behind them any longer? 

I worried I would have to stop; worried I couldn’t catch up; worried we would miss the train because of me.

My brain pushed my legs to move, leaping over steps when I could, worrying all the while my heart would be my downfall, giving out, causing my body to meet the ground.

It didn’t. But the interaction between my brain and body had me saying to myself, Good grief, I am  . . . (inhale) . . . out of shape!

It wasn’t pretty.

When I returned home, I joined a fitness center. Never in my life have I been a member of a gym, but this one was reasonably priced for my budget, and the membership fee is due on a month-to-month basis; I can cancel at any time. If my daughter hadn’t taken a Health and Physical Education Class required by her high school this summer, I probably would have continued my sometimes daily walks around and around my front yard like I always have. Walking is exercise, and I have done it for a long time, but after feeling breathless sprinting for the train, I knew something had to change. I needed to add more difficulty to my already existing—hardly called exercising at all—routine in order to strengthen my heart, lungs, and muscles that are sadly not what they used to be. Exercising at a gym with my daughter was the change I needed.

My progress is slow—I don’t want to overdo it fearing I will injure myself. And, feeling tired on most days brings with it a lack of motivation leaving me wondering: Am I supposed to feel this tired? Is it age related, treatment related, or both?  It is probably both. Once I get moving, though, I do feel a great satisfaction after working my tired body. It feels good to watch my muscles work while I lift weights; it feels good to feel my heart rate increase with the steps I take on the treadmill. It even feels good when the machine rewards me with its squares of bright orange after I reach my targeted heart rate.  Having my daughter as my work-out partner has proved to make this a fun endeavor and forces me to get moving.

Month number two of exercising is about to begin. I realize I won’t ever be the Lisa from years ago with the red face, heart beating wildly, lungs expanding grabbing all that oxygen and feeling wonderful while not worrying about dropping dead at any moment. Exercise won’t stop my cancer from doing what it is going to do, but it does give me hope that if my next Chicago foot tour finds me sprinting for a train that is about to leave the station, I will be smiling because it feels good to run, and it feels good not to worry that I am falling behind the sprinters, or that I am pushing my heart too hard. I am hoping I can close the gap between us, but if I can’t, I know I will catch up. Just give me a few extra seconds.

Parenting through cancer

Cheryl Weinstock, a health writer who has written for several publications including The New York Times and Woman’s Day Magazine, contacted me a few weeks ago after finding my blog. She was writing an article for Cancer Today Magazine-(on-line) reporting on a study focusing on parents with cancer. The study was designed to look at how patients with young children had a decreased quality of life due to cancer’s impact on their parenting ability. Concerns for their children also shaped their decisions about treatment choices. You can find her published article here.

 Photo from article/Photo by Sasiistock/istock/Getty Images Plus

From the very first time I witnessed the pregnancy test revealing its secret, I made a commitment to that tiny person growing within me to see them into adulthood. Cancer has jeopardized that commitment.

When I was diagnosed the first, the second, and the third time with breast cancer of course I was deeply depressed, but, at the same time, I was acutely aware being present for each of my children could not happen through sheer determination alone. It had to come from proven treatments. Treatments that were a gamble. No one knew if the drugs given would keep me alive. No one knew what side-effects would occur as my blood carried the drugs throughout my body. Even with all the unknowns, I was willing to try whatever treatment was recommended for me.

One of the questions I was asked during the interview was: Do patients with children make different choices concerning treatment than those without children? Since I am a parent of four children, I can only answer that question from that standpoint. My answer is, yes.

As long as treatment offers me a chance to keep death away then I was willing—am willing—to try it. If it offers me a chance to continue overseeing the care of my children, to continue being part of their lives even with possibility of sacrificing my quality of life then I will try it; it is that important to me. (Within reason of course, being alive and unconscious is unacceptable.) 

For example because I was familiar with the drug Taxotere—having been treated with it during my stage one diagnosis and knew the side-effects it caused (hair loss, intestinal difficulties, fatigue, decreased immunity, etc) I welcomed it. If I had had no children at my stage IV diagnosis, I might have chosen to forego that drug. Instead I planned my life around the side-effects. Wanting to live for my kids is a fierce motivator.

During the process of Cheryl’s writing of this piece, we spoke a few times. In between one of our conversations I realized that the study she was citing concerning this issue of patients parenting with cancer I realized I might have been part of the study she was writing about. My suspicion was confirmed when I read her article.

It was six months after my stage IV diagnosis in 2013 when Eliza Park, psychiatrist at UNC Lineberger Cancer Hospital in Chapel Hill, NC interviewed me. My goal then as it is now was to live as long as possible because of my children. At this time—my third diagnosis with breast cancer—I had three soon entering college and one finishing fourth grade. The thought of not seeing my youngest to the end of her high school years was worse than the thought of my dying.  She was 10 years old. How would she remember me? I had been her main caregiver, how would other family members—my husband, his parents—respond to her needs? I had a plan, would they care about that plan as much as I did? I was helpless. Completely at the mercy of whatever my cancer was going to do to me. It was a horrible position to be in.

(The results of the study are found here.)

Another question asked by Cheryl concerned my thoughts of whether an oncologist should educate patients about how each treatment can affect their ability to parent effectively. That question was also asked of me back in 2013. My answer is the same today as it was then. An oncologist’s job is to treat the disease. They can only guess how an individual patient will respond to and what side-effects might occur. I think oncologists should direct their patients to resources and professionals trained to help with parenting concerns—as my doctor did.

I do believe that an oncologist should build a caring relationship between themselves and their patient. Talking about children should be part of that relationship. Simple questions like "how are your children" can make a patient feel as if the doctor cares about their life beyond the hospital doors. My first oncologist was not so great at this. My second oncologist makes it a point to ask how everyone in my family is doing just about every time I see her.

During the study I remember being interviewed three times. Each time I suspected the goal was how to better serve this particular group of patients through the development of programs. Programs that would help parents as they stumble their way through talking about their illness with their children, helping them work through their anxieties about discipline, and having discussions with those who will take over their responsibilities when they no longer are capable. I suspect many parents would utilize such programs.

Toxicity of treatments does impact a parent’s ability to care for their children. Improvements in the quality of life for these patients—and for all patients with cancer—can only be achieved when less toxic drugs halting the progression of disease become available. In the meantime, professionals will continue looking for ways to help advanced cancer patients with children parent through cancer.

If you would like to read more about being a parent with cancer and the difficulties that children face because of their illness, please follow this link When a Parent has Cancer.

Five Years of Moments

When I first learned my breast cells were on a path to destroy me, thoughts of living to see tomorrow were bleak. I scrambled to purge and pack my belongings so my husband wouldn’t have to deal with them after I died. I worked on completing projects that I had been putting off finishing until life slowed down. Staying home was a choice because I was preparing to die. Leaving home to have fun, I thought, would be wasting my limited time, hours lost that I couldn't get back. 

Amazingly, here I am five years after my first treatment (May 6th, 2013) for stage IV breast cancer. The thought I might die tomorrow still enters my mind at times, but my thinking has became more optimistic. As time moved along, I began thinking I will be alive tomorrow. In fact, on days when I am feeling well I believe I will see tomorrow, and the day after, and the day after that. I have even entertained the thought I will be sitting at this same desk, in this same chair, writing about my 6th year of treatment for my disease. 

Over these five years I have allowed myself to relax and not think so much about dying. Staying busy has helped since it keeps me focused on other aspects of my life. Watching a television show that really adds nothing to my life except some laughter or some information about the world used to feel like I was throwing away my limited time. Now, I can watch because I have given myself permission to recuperate from work and the stresses of daily living. 

I am certain I am feeling this way because I am tolerating the treatments, my cancer is quiet, and my quality of life is allowing me to live almost as if there is nothing wrong with me. Perhaps and most likely, the biggest reason I am able to relax more today than five years ago is because my most important work is nearly finished. My youngest daughter who was 10 when I was diagnosed stage IV is now 15. A lot of relief goes with that.

Three weeks ago, though, reality slapped me hard in the face reminding me I am physically fragile. It reminded me that my rejecting the thought I could die tomorrow—or today—is fantasy. My “not dying today” mantra that I happily tell myself is in fact a lie. 

On that Sunday, I arrived at my treatment center for TDM-1 (Kadcyla #67) hoping for an event free appointment. I didn’t want to be denied treatment like I was at my last scheduled treatment. My platelets and absolute neutrophils were low. The platelets were 68,000 in 1 cubic millimeter (normal between 140 and 440,000) which is low but not so low I cannot receive treatment. But, in combination with my absolute neutrophils at 1.7 (normal range is 2.0-7.5), I was refused treatment. That day, I returned to my car and drove those 2 hours and 15 minutes home in disappointment. Thankfully on this treatment day, my platelets and absolute neutrophils were back in a good range. But, something else was amiss.

“Are you noticing any dizziness, lightheadedness, or shaking? What have you eaten today?”

“No, I feel okay. I ate a banana and drank coffee on my drive here.”

“Your glucose level is a 37.”

“What is it supposed to be?”

 “Above 70.”

“Oh.”

“The on-call doctor has spoken to your oncologist and the decision was made that you can be treated, but you can’t go home today. That glucose level is dangerous, and we can’t let you drive.”

At that moment, I felt afraid. I thought I could die . . .  today. 

Would I get to go home, ever? I am not prepared. It wasn’t supposed to end this way.”

A team of detectives, endocrinologists, were assigned to my case.

From Sunday afternoon to Wednesday evening, I sat in a hospital room waiting to find out what might be wrong. Blood tests were done to see if my adrenal glands were producing the correct amount of cortisol that works to control blood sugar levels. (Cancer can metastasize anywhere, so there was concern that my adrenal glands could be diseased. A CAT scan was done to look for metastases in my abdomen and pelvis—it was clear!) Another adrenal produced hormone, AC, was checked, too—it was a little low. With the AC hormone level low, I panicked a little. A tumor in my brain could be the reason my glucose had dropped so low. Since I am a stage IV patient, the doctors were concerned about the possibility of a tumor(s) inhibiting the function of the hypothalamus and pituitary gland that signal the adrenal glands to release its hormones. Scanning my brain was not ordered, though. The doctors wanted to do another test first.

The next test would determine if my pancreas was working and that I didn’t have a rare condition of non-diabetic hypoglycemia. I was told I could drink water but eat no food until testing was stopped. The fasting could last as long as 72 hours. In the end, luckily, I was allowed to stop at 57 hours. Yep, you read that right—57 hours with nothing to eat—a record for me. On the third day, I was feeling not as hungry and had some energy I was not expecting. Turns out, my pancreas works! And, my liver did its job too as it responded to my starvation—gotta love those ketones giving my body some needed energy. My glucose levels rose and remained in the high 70’s. My adrenal hormone that was low will be checked again at a later appointment. For now, concerns about any brain tumors have been put aside.

Being in the hospital—the first since my diagnosis—reminded me that my fantasy of many tomorrows is just that . . . a fantasy. The only certainty I have—that anyone has—of being alive at any given point in time is the one being lived at this moment. 

Each moment I have lived that has turned into five years of many moments has been wonderful. I feel so lucky to have lived each one. As soon as the fear and worry of my dying on that day subsided while I sat in that hospital bed, I returned to thinking I will be alive today and tomorrow because that is what I want to believe. I want the carefree bliss of imagining the next five years of many moments, still writing, still enjoying living. It may not happen, but for now, I am going to keep believing it will even if it is statistically and probably a lie.

Bing images

Fear and Hope Competing

The month of April is one I love, and one I hate. 

My twin sisters were born April 27, 1966. My youngest daughter was born April 6th 2003. I love everything about that!

I hate that the beautiful month of April is tainted by a diagnosis I cannot love. 

However, I can love and do celebrate that this month marks the 5th year of knowing I have metastatic breast cancer, and I am still alive!  

Yesterday, the organization SHARE CANCER SUPPORT  published my story on their website.

Please visit for more information about this organization. There you will find support if needed and other shared stories from breast cancer and ovarian cancer patients.

My story is below. You can also read it here .

On a sunny day in April of 2013, at the age of 48, fear and hope began a competition unlike any other I had experienced. I was told I had a terminal disease; my life’s story had reached its final phase. Fear and hope were racing to the finish line of my life. On that day and the days that followed, fear was refusing to back down and hope seemed far behind. With much left to do on my life’s to-do-list, I felt helpless.

Ten years before I became a terminal—stage IV—cancer patient, physical exams and two mammograms over two years gave no indication there would be trouble ahead. There was no lump. Instead, there was an odd thickening underneath the skin making my right breast feel firmer than my left. Since the mammograms showed nothing, I was told all was normal and sent on my way.

It wasn’t until I discovered a yellowish, sticky discharge from that breast that a Physician’s Assistant thought it was time to react. Some tissue was taken then sent to a laboratory. Someone within that lab determined the cells within the ducts of my breast were cancerous. The diagnosis was ductal carcinoma in situ (DCIS), a breast cancer that is confined to the milk-producing ducts within the breast. These mutated cells had not invaded any of the surrounding tissue so my condition was defined as stage 0 disease.

After the whirlwind of appointments and information gathering, I underwent a mastectomy to remove the extensive hardened area of the diseased breast. I opted for the other to be removed as well hoping to prevent any future disease in that breast. Weeks of healing took place. Then, slowly, small increases of fluid were added weekly to the tissue expanders placed under my chest muscles during that first surgery. The expanders worked to stretch my tissues until eventually two cold, hard, artificial breasts were created.

During this time, life was never on hold. People needed me. As soon as I could I returned to my busy life. With around a 98% chance of not dying in 5 years, I felt confident I would be among the living and cancer free as well when 2010 arrived—hope was winning.

Unfortunately that magical milestone year would not be mine to celebrate. As the final pages of that calendar year were about to be completed I found a tiny lump—five millimeters to be exact—just below my clavicle bone on the same side where my diseased breast had been. My breast surgeon took quick action removing it in the examination room. I will never forget watching that deadly tissue floating in the fluid-filled container she plopped it in after freeing it from my chest. Fear was in the lead again, but it took a few steps back when a CAT scan revealed no lymph node or organ involvement. Stage 1 disease was the diagnosis. The relief I felt manifested in my jumping up and down in my kitchen after ending a phone call from my surgeon.

Treatment began. Taxotere took my hair and much of my energy with it. Herceptin and carboplatin added to the gastrointestinal difficulties that Taxotere had bestowed upon me. With radiation treatments completed, fear now was following hope too closely. Even so, adjustments were made, and life continued as it had before.

My oncologist had informed me that Her2+ disease is aggressive. Statistically, if it is to reappear, it will do so within three years.  Year three of no symptoms was a few months away. Life was good until the day I sat on my couch watching television. Deciding this was a good time to check my neck and clavicle lymph nodes, my fingers moving carefully at the base of my neck suddenly stopped. There it was: a swollen lymph node. I didn’t need a doctor to tell me what it was. A few days later a CAT scan caught my medical team’s attention. There were cancerous nodules in both lungs and an over-sized lymph node deep within my chest. In order to establish a diagnosis, down my esophagus an instrument went carrying a small needle with the intent of retrieving a few cells from that lymph node pushing against my esophagus. One look through the microscope ended any speculation. Fear of dying from this disease had found its permanent home. I was doomed.

Glaring at me from all directions were statistics stating the average life-expectancy for a stage IV diagnosis of breast cancer was three years. Although three years is an estimate and isn’t true for all patients, and probably needs to be updated, it haunted me. That blanket of grief made me certain I would be dead within the year. 

Fear was in the lead. But, with each passing scan and each day I lived, hope started to gain momentum. I began experiencing happiness again. I saw another spring and then another. Taking a stroll recently around my yard taking in the beauty of the beginnings of my wisteria vine’s purple buds appearing proving to me there is life inside those dead looking branches brings me such joy. I am experiencing another spring. Never did I think I would live this long.

Incredibly, the cellular biology of my cancer responded to treatment. Herceptin, Perjeta, and Taxotere gave me another year. Kadcyla and Cyberknife radiation—to one troublesome lung nodule—have given me years. With scans showing no disease big enough to be seen, I celebrate each day that I have been able to watch three of my four children become adults and my youngest begin her first year of high school. Because of the work of scientists, doctors, nurses, clinical trial patients, radiation technicians, oncologists, patients on social media, and others unknown to me, my story continues.

In the end fear will make its final move when I am told there are no more options. At that point, hope and fear will no longer be competing; sadly, fear will prevail. Not the fear of my death, but the fear of the process of dying; fear that cancer and the side effects from treatments will prevent me from accomplishing my personal goals. For now, though, hope remains in the lead.  I am so grateful.

Thankful for a Thankless Job

My new job is a thankless one. Much of it involves having to continually remind the 4th and 5th graders in my care the school’s basic behavioral guidelines. Seemingly, they did not learn to respect the school’s property, themselves, and others in their earlier grades. These students are in my class because of some academic challenges, but these challenges could be remedied, I believe, with some stricter behavioral rules and expectations found outside of school. If these simple rules aren’t followed here, what rules are being broken beyond the schoolhouse doors?

Teacher burn out, want of higher pay, societal ills . . . come see my classroom for a day. It will all make sense.

I have had some mean comments made to me like: “You can’t tell me what to do. You’re not my mom!” “You’re old.” “You’re ugly.” And, “Get your wrinkly hands away from me.” All that spewed at me by an eleven year old child. A child with no boundaries about what he should and should not say. A child who doesn’t understand he is taking valuable learning time away from his classmates with his disruptive behavior. Even if I knew the intricacies of his life outside of school, I am certain I cannot give him what he needs in a class of 20 students that I manage alone since the lead teacher resigned two weeks ago. 

Then there are a few girls who struggle for power. They try to control the classroom and to control their sometimes friends/sometimes not friends. They yell demanding respect while giving no respect to anyone.

I tell these children: walk down the hall quietly; respect others; don’t call each other names; treat the classroom equipment with care; keep your feet on the floor; please stay in your seat; please pick-up your trash . . .

Why can’t they get these simple rules? It blows my mind!

My body has no more to give the world when I finally reach home. Yet, I get up and do it all over again the next day.

Besides the additional income, and the thrill I experience when a child finally understands what to them seemed incomprehensible, those four hours telling kids to be quiet during homework, drilling three times nine, or learning about idioms, I almost forget my diagnosis. That alone is reason enough to keep going to a thankless job; one that I am thankful for. 

Survivor

Carefully placed 

under tissue paper I found 

nestled between
colorful cottony socks 

in a pouch of shimmering silver, 

were three golden ribbons 

like crossed fingers of hope, 

a pair of earrings 

and a small charm--

that medal of honor

tiny beading attached 

linked one after the other. 

One word repetitiously 

encircling the third, 

survivor, survivor, survivor, survivor 

it read. 

Meant to bring joy
by the sender to me-- 

an early stage cancer patient 

treatment now ended 

deemed cancer free. 

Do I tell her I’m not 

nor never will be 

the survivor she is 

with cancer behind her

instead of in front? 

How once I too thought 

when the treatments were done 

I was a survivor 

and would gladly have worn 

that delicate necklace 

of silver and gold 

with that word and the hearts 

the meaning so true, 

at the time. 

Or do I say thank you 

and nothing more, 

letting her think
survivor, 

a word we both share? 

With cancer behind, inside and ahead, 

my eightieth infusion 

just hours away, 

survivor, survivor, survivor, survivor, 

with the four little hearts 

that golden ribbon of hope 

will remain tucked inside 

that silvery pouch 

my silent reminder 

a word I can’t wear. 

Survivor I want to be; 

survivor I hope to be. 

Survivor,
survivor?

It's not supposed to be me. 

Quick Update

Yep, it's true. My January 29th scan was beautiful! Still having trouble believing it.

Next scan will be 6 months from now--simply wonderful.

Coping with Cancer in our Modern World

https://searchengineland.com/77-percent-of-online-health-seekers-start-at-search-engines-pew-study-145105 

Can you imagine—in a not-so-distant past—how difficult it must have been to be diagnosed with a deadly illness and having no access to others who were experiencing a similar health condition? For an unfortunate number of people this reality still exists, but for many, the internet has changed everything.

I sometimes think how afraid and isolated my great grandmother must have felt as colon cancer took her life, or how frightening it was for my grandmother to have only her doctor’s experience and knowledge of her condition to guide her during her treatment for uterine cancer. I wonder how alone my mother must have felt or how maddening it must have been to not have information easily obtained about her diagnosis and treatment for ovarian cancer in the 70’s. It must have been hard for my dad to cope with lung cancer in the early 90’s having no one to talk to who was experiencing the same horrible disease that killed him. Without access to social media to educate, guide and comfort me, I am certain my experience with cancer would be far different and far more challenging.

Today people can connect with others all over the world experiencing similar health situations. It helps people find someone of which to share a “me too” moment. On-line support groups give members the ability to ask questions about side effects from treatments or find help in making treatment decisions. People can vent easily about their insurance plans being inadequate, or share that a pharmaceutical company has agreed to help them with the costs associated with their life-saving drug(s). Questions about pathology or scan reports that have unfamiliar medical terms can be easily understood by finding someone who can clarify the meaning or by simply typing the word into a web browser. How wonderful it is to read about the newest research, clinical trials and new drug information shared by a Facebook group member or by someone you follow on Twitter. There is a freedom and emotional release in being able to blog about the resentment and frustration you might have about an oncologist that does not want to order an MRI to look for brain metastases because you have no symptoms and saying if something was found it would complicate your current treatment plan. (It is as if she said, “If there are any mets to your brain, we will just let them grow willy-nilly. Why worry until we have to—ugh.)

Also, you never know what you might find simply lurking and learning from reading the posts and comments of others. Sometimes I participate in discussions, other times I lurk. On one particular lurking day I came across a discussion on Inspire 's Advanced Breast Cancer Group. An active member, Best Bird, wrote about Cyberknife and lung metastases giving me a treatment to consider if my lung mets ever grew. Well, my remaining one did. My asking if the progressing nodule could be zapped by Cyberknife completely changed my life, presently NED--no evidence of disease. My oncologist had not given any thought to radiating that nodule. If not for the happenstance of my reading Best Bird’s words, I would have never known about it. I would have moved on to the next standard course of treatment, and who knows if I would be alive today--thanks Best Bird!.

Recently an article from Healthline called The 2017 The State of Cancer Report: The Impact of Digital Information and Patient Support Networks by Ann Pietrangelo and Whitney Akers came to my attention. It reported the results of their survey of 1500 people. The participants were either living with cancers (not just breast), considered a survivor or were caregivers. The questions were designed to determine each individual’s engagement in social media and the reasons for their use of it.The participants were grouped generationally to see if age was a factor in social media activity. Among those surveyed there were 500 Milennials also called Generation Y (approx. ages 18-36), 500 Gen Xers (ages 37 to 52), and 500 Baby Boomers (ages 53-71). The article provides percentages of the number of participants who used social media to make decisions about their doctors, treatments, hospitals and if the internet was used to find information about new drugs, therapies, and clinical trials. Using social media for emotional support was also evaluated. It includes statistics on which generational group was most active. In my own search to find people my age (53) with the same condition (Her2 neu breast cancer), I found out quickly my generation, Baby Boomer, isn’t quite as involved as Millenials. The possible reasons for this are mentioned in the article. It is a lengthy read, but if you can get to the end, you will probably see your reasons for using the internet described within it. Be prepared though to feel a bit left out of the conversation if you are stage IV like me. The article focuses on people during and after cancer. There is no after cancer with stage IV.

I think the most important trend that has developed over recent years in healthcare is the practice of a more patient-centered approach to care allowing patients to be part of the decision making process. The article points out that 62% of Boomers and Gen xers who participated in the survey prefer shared decision-making about their treatments. I think this change is a win for patients everywhere.

Please visit my new page on the bar above to find some social networks that might be able to help you during a time of need.


*Note: Please check with your doctor about any advice offered about treatments in these social groups. I do not want you to take supplements that may impair how your conventional therapy works or encourages you to waste your money on a hope for a cure that has not been proven to affect your specific type of cancer.

Opening Doors to a New Chapter

At five in the morning, on January 3rd, the last of my three oldest children left my home heading for her new apartment in a new city soon to be starting a new career. Prior to this change in her life, she was teaching in Japan. Before she left for Japan, I would tell her, teasingly, not to fall in love with a Japanese boy--I feared she would not come back to live in the states again. Turns out she didn’t meet a Japanese boy. Instead she met an American boy—an American boy in Japan, surprise! Both are back in the USA, and she has accepted a job in his home state. At least that state is only one time zone away from me instead of the 12 hours that Japan is making communicating sometimes tricky.

Watching my three oldest children leave my home to travel to their new homes is always a hard process for me. I become excited then I grieve. I become acquainted with happiness again upon remembering they have successfully made the transition to adulthood, and my job is done. When I brought them into this world, I knew at some point my children would leave, however I never fully explored how I would feel or behave when it happened. It was a door I wanted to remain shut. With each choice they made on their way to adulthood that door kept trying to open despite my holding tightly to the knob on the other side. It hurt the first time they left, and it hurts now even as I have learned to accept their living far from me in three different northern states—daughter #1 in New York, my son in Maryland and daughter #2 in Illinois.

Daughter #3 has a few years before she is off to college, so my home is not void of children yet. In September she also experienced a change in her life causing me to be able to spend less time with her—another opening door only this time it was forced open by me. After much thought, I decided to stop homeschooling her. Not because I no longer enjoyed teaching her or learning was not taking place, but because I wanted her to have a routine she could focus on if my health went in the wrong direction. Together, we worked to complete the application required in order to attend an early college high school program. She was unsure, but I knew this was the right thing to do. When the acceptance letter came in the mail she expressed remorse to no longer being schooled at home. I shared in that remorse, but also found I was relieved—still am; her next four years had a set course that would go on if I could not. She recently completed her first semester with an “A” in every class. It has been a wonderful change for her leading to my decision to seek a change in my life’s routine, too.

Never did I think I would be able to do this again in my life, but in November I applied, interviewed, and was hired to assist in teaching in a 21st Century Community Learning Centers Afterschool Program in a local public elementary school. In mid-December I worked four days before the Christmas holiday season began. It made me feel I was contributing to society again while also adding to my family's income depleted by my medical bills. 

As I prepared to settle into my new routine with the beginning of the New Year, snow fell upon the East Coast including my state of North Carolina. Students went to school and then were sent home due to the predictions of traveling conditions worsening all before I set foot through the doors of my new employer in 2018. I must admit, it was a nice bonus to have a few extra days added to our holiday time and a nice reminder that every time my daughter is out of school, I am off too. Nice right?

When snow falls and the temperature is just right, snowballs and snowmen must be made. My daughter and I had a blast building Mr. Snowman with the rare three inches of snow that fell on January 4th.

Scans for me are January 29th. I don’t want to think about progression, but unlike my children one day growing up and leaving home that I tried not to think about, I have to open this door because if I don’t I may take too long to recover from my resulting grief. I role-play in my mind how I will react if the news is good or if the news is bad. If the news is bad, I know I will revisit despair, but I also know I will not travel there too deeply because I have already been there. I know now, too, I must stay focused on the things I wish to accomplish in my mortal life. In the meantime I will continue hoping for "no evidence of disease" on this next scan. If it isn’t then I will deal with whatever that entails and deal with that new chapter. 

Perhaps it is cliché to talk about life’s changes as chapters, but for me that is truly the best description of all the changes that happened in 2017. My oldest children are working and doing adult things; my youngest is now in public school; I am getting paid to work. These are huge changes for me; ones I never thought I would see. Changes that have given me a new chapter in my life that hopefully will continue for the 360 days left in 2018. Maybe even beyond.