Posts tagged with 'breast cancer recurrence'

The New Year – An Unknown Expedition

  • Posted on December 27, 2014 at 8:54 pm


2015? Was Y2K that long ago? Many advised in 1999 we head for the hills and stockpile needed supplies as the new millennium dawned. They predicted a devastating worldwide technology glitch.

How far we’ve come in information technology!

What about medical technology? Back in 2000, I was in remission from my first occurrence of breast cancer. Blissfully I cruised into the coming century. How could I know that a personally devastating recurrence of the cancer in another early stage would happen? This cancer was HER-2 positive, an omen I should have taken more seriously. Perhaps I should have abstained from alcohol, shunned binging on sweets, cut back permanently on work hours that were stressful, yet rewarding. Then in 2012 the diagnosis of all diagnoses–my personal Y2K–screamed my condition of stage IV breast cancer, the final stage that may be treatable, but is, in my trusted oncologist’s own words, not curable.

Have we come that far since 2000 in our knowledge of breast cancer? We certainly have made advances and know far more about the disease. We have new treatments available that were only in early-stage research at the turn of the century. Yet there are subtypes of breast cancer of which we know nothing. Some patients thrive on Kadcyla, the latest anti-HER2 antibody conjugate drug that is the most promising yet. Others have to find alternatives, desperately clinging to any remaining months they might be afforded. Others, like me, found Kadcyla a miraculous drug keeping the cancer in my bones at bay, but not preventing this ugly disease from entering my brain last September. The only way I found out about the brain metastasis was through a seizure.

Now, in addition to undergoing scans of my whole body to see if the cancer has progressed in my bones, or spread to my lungs or liver, I require scans of my brain. These brain MRIs show if this monster has been conquered by the latest targeted radiation or if it has eluded all attempts to eradicate it. We just don’t know enough at this point.

Jan in Oct. 2014 3 days after the brain seizure

Jan in Oct. 2014 3 days after the brain seizure

I am thankful to be alive as 2015 approaches. Two years ago I never expected to last this long. In the meantime I had the honor of seeing two sons married. I await my next brain scan in January and receive targeted antibody treatments every three weeks until they no longer work or I die of another cause. We do what we must. I will continue to exercise, eat nutritious meals, pray, and enjoy the company of my family and friends.

Miracles still happen. I live on the wings of prayer and dependence on God as the middle of this decade unfolds and I embark on another year of an unknown expedition. He provides the light that keeps on giving hope to patients. No one knows how long those candles of life will stay aflame, but we do all we can to avoid extinguishing them. My wish goes out to each patient, whether in early stage or a later one, that more drug prospects will be offered and more government approvals made to allow the most options for effective treatments.

Blessings to you all in the New Year!




A Brainy Day

  • Posted on October 17, 2014 at 2:52 pm
Lundberg Farms tour 9-29-14

Newcomers Club in Richvale, CA on tour of Lundberg family farms

The day of that lovely tour of the Lundberg organic rice farms ended on a note not so sweet as the apple-cinnamon rice cakes cooking very near where I am standing on the right. That afternoon a seizure brought me down to the floor of a store where I was being fitted for a breast cancer fashion show. Of all places! At least I wasn’t driving at the time.

Two nights in the hospital–with a brain MRI sandwiched in between–revealed that the seizure was due to the spread of little cancer cells into my brain. This was not a result I had expected after having participated in a clinical trial protocol for almost two years. The two drugs sponsored by the trial are state-of-the-art targeted proteins designed to kill off anti-HER-2 rogue cells wherever they appeared. While the regularly scheduled CT and bone scans I endured revealed very good control of the spread to the ribs, spine and pleural area, they were not designed to look at whether these drugs cross the blood-brain-barrier to prevent the forward march to my gray matter.

Since the seizure my new medical oncologist did inform me that due to the aggressive nature of my cancer, 1 in every 3 patients does have the cancer enter the brain.

What now?

I plan to call someone who has been through the brain treatments and is on the other side of it.

An MRI using a stronger magnet just this morning will inform the radiation oncologist and his trusty sidekick neurosurgeon how to handle what I hope will be targeted radiation. This is preferable to the whole-brain variety of radiation, as the latter is the standard of treatment that causes cognitive decline. I would hate to outlive my brain.

A whole body PET/CT scan scheduled later this month will show if I can keep going with the current treatment I had been receiving before this earth-shattering news. It would be a blessing if I can continue on with being infused with those proteins to keep the cancer out of the rest of my body.

Not everyone in my position believes in God or holds on to spiritual grace and faith. In my case, I do believe prayer is upholding me as I look to the Savior of my life and hold on to love, friends, appreciation of the little things, laughter, everyday miracles, and light. We all cope in ways that work for us. For whatever time God has me on earth, I plan to use my words and actions to inspire compassion and hope in others. As more medical research develops, we will find many more ways to treat metastatic breast cancer, as a chronic disease, and eventually a preventable disease. Look how far medical advances have already come.

Looking onward and upward with hope toward good scan results and treatment options.

Soul Music – Can you dig it?

  • Posted on April 26, 2014 at 3:41 pm

Musical notes

Have you ever wondered why music soothes us to the core? Why it calms the soul as much as being massaged, soaking in a hot tub, or drinking a cup of chamomile tea before bedtime?

Research has confirmed what diverse cultures–and our own brains–have known for millennia. The music-as-medicine effect is captured aptly in a recent Berkeley Wellness article. The findings clearly explain why I, as a stage IV cancer patient, enjoy playing ukulele so much. It’s an easy instrument to learn, if not master, and the peace it brings me is unmatched. I’ve tried painting, reading, organizing, light gardening, comfort foods, and shopping as ways to cope with my ailment, to whisk my mind to other places. While each of these activities serves a purpose, nothing (other than anti-anxiety meds and good friendships) can come close.

Just picking up the ukulele and playing a few songs in the privacy of my own home cheers me up. This emotional lift need not come from a performance at a retirement home, although such an opportunity certainly benefits both me and the residents. It need not even come from our group rehearsals at a friend’s home where we practice tried-and-true songs and tackle new ones. It’s just the enjoyment that comes from playing and singing in any environment.

I thought perhaps my desire for music stems back to when I listened to the radio while canning cherries with my mom, or while sewing clothing as a teenager. And maybe listening to background music did make an impression then. But now I see that the love of music is universal, built into our DNA as a stress buster that doesn’t require a prescription. I suppose it’s considered alternative or integrative medicine, but I choose to see it not as medicinal, but as natural as breathing.

Music certainly lifts me up when I’m feeling blue. Some days are better for me than others in terms of pain and mental state. When I’m down, nothing can soothe me more than listening to my favorite singer-songwriter belt out an album full of familiar tunes: singers like James Taylor and Mark Schultz. It’s been proven that music helps with depression and grief, a discovery I made long before studies came out to verify these connections.

Music note heart

As the above article notes, the sounds of silence may also resonate. When I’m in the car on my way to and from my clinical trial infusions, with much time on my hands, I sometimes bask in the warmth of road noise alone. Other times, I’m very thankful my son convinced me to have a USB port installed on my dashboard so I can benefit from all the songs synced to my i-Pod. Singing along to tunes that, in random order and genre, hit my ears from the speakers, I get a high like no other.

Songs can be annoying if we are put on hold on the phone and can’t mute those we dislike. The same with restaurants. I found silence to be preferred to the strains of “Yesterday” and “Eleanor Rigby” that met my ears when I had radiation back in 1996. A baby boomer, I was well aware of the gloomy lyrics to these songs, even though they were broadcast in elevator music format. Choosing your own music for surgery or any other procedure is much preferred.

Every routine task I do, from scanning a photo album into my computer to organizing and cleaning my house, is accompanied by Pandora radio or an iTunes playlist. The chore–or fitness stretch–goes faster and is far more pleasant when my faves are in the airwaves. I think that’s why Pandora and other online radio stations have fared so well. Who doesn’t like creating his or her own music station and singing along to the hits? 

While Mozart and other classical composers may offer the least stressful of the music genres, according to the Berkeley Wellness article, this fact shouldn’t limit our choices. I prefer an eclectic selection ranging from classical to classical rock that wakes up my brain and offers me unique solace. But if I have guests, I don’t turn on the speakers unless I know what I broadcast will be enjoyed by all. Music can offend as much in genre as in volume. It’s all a matter of balance and sensitivity.

Having enjoyed my uke so much, I decided to invest in a musical keyboard. Inspiration came from a wonderful woman with whom I stayed recently who plays piano like a virtuoso. I could have listened to her play and sung along with her all evening, if I had the strength of a woman in good health. She encouraged me to get a keyboard and play for myself. I never had piano lessons, but I can read music, having learned in elementary school by playing a clarinet. So now all that’s impeding me from playing is assembly on a stand. 

May we all enhance our lives with the joy and serenity that come from delighting ourselves with ear candy.

Do you like to play or listen to music? What genre(s) rock your boat?

Where Have All Compassions Gone? Long time passing

  • Posted on April 12, 2014 at 12:55 pm

Zulu children South Africa

Have you known someone whose life was robbed by breast cancer? Approximately 40,000 Americans die each year of the disease (American Cancer Society), and worldwide the figures rise to a whopping 450,000 (World Cancer Research Fund Int’l).  After a special friend in my support group died of this disease, we attended her funeral on September 11, 2001, of all days. Another friend succumbed to the disease a year ago, her packed memorial service leaving me to wonder why drugs still worked to keep me alive.

As a breast cancer metavivor I’m convinced that research, rather than a cure, should be the focus of our efforts in this struggle. I, for one, would be happy with drugs that keep our disease in a chronic state, like diabetes. Research might lead to a cure, but right now I would settle for drugs that will treat our disease effectively, keeping the cancer at bay with the least amount of pain and side effects.

Is that too much to ask?

I participate in a discussion board hosted by Inspire, a go-to support site for various ailments. The one to which I subscribe is a web portal solely dedicated to advanced/metastatic breast cancer patients, their families, friends and health care providers. It’s a beautiful community where we support each other compassionately and in a way that others, including those with earlier-stage diagnoses, cannot. Not only do we share side effects of drugs and how to manage pain and handle anxiety and financial and insurance concerns, we also address efforts at advocacy.

A passionate advocate on the board, Phil McCartin, speaks for his wife Lorraine and all the rest of us with advanced breast cancer. He believes the US FDA must allow more drugs to be approved for metastatic patients. Compassion is the name of the game. Clinical trials can work well, as his wife and I both have personally experienced, but once a patient is off that trial, what happens? Insurance may no longer cover the cost of these life-saving, but expensive drugs because the FDA has not approved them yet for the specific indication being treated.

What are they waiting for?

Trials have gone on for years proving that T-DM1/Kadcyla, one of the drugs I am taking, is efficacious and safe for metastatic breast cancer patients who have not taken any other drugs for their advanced disease. A targeted biologic therapy, it proves far superior to chemo in its side effects. Yet it is still only approved for those metastatic patients who failed on another medication. So if we can no longer participate in clinical trials (for various reasons beyond our control such as platelet drop), we may have to wait for palliative or hospice care to kick in because we can’t afford these drugs. Sometimes the pharmaceutical manufacturers will pay for part of their drug based on patient income and perhaps other factors, but there is no guarantee.

I am not about to leave my trial voluntarily to get treated close to home, only to find that insurance will not pay for the combination of drugs that has saved my life for over a year with minimal side effects. It’s too risky. So I continue to drive hundreds of miles every three weeks to get Kadcyla and Perjeta for free.

An article posted by Phil and a video by Lorraine drive home the point. These are real people, not actors or simulations. Lorraine’s wonderful news that she can now be treated locally is featured in a post by a fellow breast cancer blogger. Now we need to find a way for me and so many others to be treated closer to home at an affordable cost. And we need FDA approval of cutting-edge combination drugs to improve our quantity and quality of life, pronto!

We need not let politics, threats of litigation, budget constraints, and bogus safety concerns get in the way of the ultimately compassionate goal of saving lives. It would help if a big celebrity were diagnosed with stage IV breast cancer and became a spokesperson for this special disease. Often that’s the only way specific diseases get attention in our Hollywood-obsessed culture.

Kudos to Phil and Lorraine for their courage and their advocacy. Unfortunately, in our pink-awareness society, breast cancer almost always means early-stage, curable breast cancer. To truly help the disadvantaged, those whose cancer isn’t curable but who seek good quality of life in the years they have left, put the money where it counts, not in pink awareness campaigns. Visit and metastaticbreastcancernetwork.

Let’s end the scourge and allow more of our friends and family members to live meaningful lives and build memories. Where have all compassions gone? I’m hoping that, unlike the song, we WILL learn.



Before Cancer and After Diagnosis (BC and AD)

  • Posted on February 6, 2014 at 2:44 pm


The most widely used calendar in our world today, the Gregorian calendar, breaks down our timeline from before Christ or the Common Era (BC or BCE) to after Christ (in Latin, Anno Domini, or AD). I know for sure that the dividing line in my life has been advanced cancer, symbolized appropriately by the crab.

Last Sunday a beloved pastor delivered a message to our church putting that divide into divine perspective, but leaving me to ponder my circumstances. Battling colon cancer for four years with 70-plus cycles of chemo behind him, he was able to speak publicly for the first time after a long silence. A voice of experience. What resonated with me most about his message? It was hard for him to remember his life without stage IV cancer.

I can relate.

After almost a year and a half since my stage IV diagnosis, I can truly acknowledge the difficulty of recalling what life was like before a compassionate doctor delivered to me that earth-shattering news. In my former life I had been laid off from my previous job and was seeking employment, with no success. In retrospect, it was a blessing no one wanted to hire me. At the time, however, the rejections stung me worse each time, like a pesky mosquito never buzzing off. Looking back, I can see  I was blind.

But now I see.

Before the diagnosis I lived at the gym, skied almost every year, ran around the neighborhood, biked through parks along bubbling streams, and painted landscapes catching my fancy. I enjoyed a large variety of delicacies, with a hearty appetite for fine dining. I visited my primary care physician and oncologist once a year. No drugs. Travel was to beautiful places of my choosing. I opened jars and picked up items from the floor with the greatest of ease, without  a trapeze. I climbed up and down stairs as if twenty years younger. I even climbed a mountain or two. The only time I got nosebleeds was high up in the bleachers.

And then it hit.

When the rogue lymph node on my chest invaded my body, all hell broke loose. Pain racked most of my body. Medicines couldn’t touch it. When finally I got into a clinical trial and started to gain needed weight after surgeries and grueling hospital stays, I realized I had lost my previous life. Now I am a most picky eater due to a weak and sensitive stomach. Eating requires twice the amount of time to consume less than half the quantity of food. Daily nosebleeds plague me despite moisturizers everywhere. I get carsick without being in a car. I take narcotics and meds for side effects around the clock. I’m lucky if I get out to walk three times a week. Frozen shoulder has returned to haunt me after a long respite. Slumber is most welcome. I visit my oncologist every three weeks and receive nausea-inducing scans every four months. Travel to the hospital for these visits is not optional, and quite wearing. This is my new norm. As more time passes, those memories of a carefree life dissipate into oblivion.

And it’s okay.

Despite all the challenges, I forge ahead. I buy a smartphone adopting the motto of carpe diem. On the days when I feel really well, I write or play an instrument, play games and study the Bible with friends, or take a walk. On other days I veg in front of a flickering screen. A huge blessing is that I don’t mourn anymore for the old life. It was still filled with pain and suffering, just of a different kind. I didn’t appreciate the nuances of life as I do now. And I can relate better to those who struggle with chronic disease or aging, wondering why their bodies don’t respond the way they used to. I could never say, “I know what you mean” or “I know how you feel” to someone, because I can’t get into that person’s body or mind and understand his or her unique pain. But I can offer people a gentle hug and encouraging words, a listening ear, a warm smile and a hand over their hand.

The pastor who gave that message almost a week ago received a standing ovation. And that’s before he even spoke a single word. Witnessing that moving scene gave me extra courage to speak out about metastatic disease, to speak the truth, to avoid sugarcoating a crabby diagnosis. We go on.

Have you had a defining incident in your life that divided it into a before and after?

Joy to the World

  • Posted on January 5, 2014 at 4:19 pm


It’s no mystery to anyone who knows me that I tend to be a joyful person, to look at the cup as half full. What might be surprising is my going to the hairdresser about a month ago and emerging as an elfish tomboy with a gamine cut. This chick no longer hides behind her hair, now that cancer has cruelly stripped me of the girly-girl image.

The new ‘do shouts boldness and confidence ala Jamie Lee Curtis. I’m no Jamie Lee Curtis, mind you. But I think it’s time to lose the charade of trying to cut a decade off my age when no one is fooled. Plus, who wants to pour Clairol over her scalp when she’s had cancer three times and is living with the Stage IV variety? Haven’t I been exposed to enough chemicals?

I admire Jamie very much, not because she was a shock queen, but because of her spunk and bravery. I haven’t lost friends because of my new look, and that shows the quality of my friendships. In college I might have lost a few if I had had a radical cut, superficial as they were. But now my friends are made of solid-rock material, with a soft center that speaks volumes.

Life continues to be good to me, however you define good. My definition varies dramatically from that of the average American. Good means encountering little chronic pain on a given day, being able to change the bedclothes without much effort and using my Swiffer® mop to good advantage around the house. Dust bunnies don’t make cuddly pets, and spindly spiders only darken my mood. A good life to me also means parties and friends, church and family.

I’d love to make long-term travel arrangements, requiring a different kind of boldness than wearing my hair ultra-short. But these days any plans tend to be shorter-range. Right now I hope to cavort in Hawaii in May, a month not so far away that I would feel uncomfortable making reservations. Thank God for good cancellation policies and travel insurance for the just-in-case scenarios.

Don’t misunderstand me. The targeted therapies I receive in the clinical trial at Stanford are nothing short of a miracle. These meds work overtime to blast any cancer cells lurking in my bones or pleural cavity, just as my Dustbuster® vacuum sucks away those pesky spiders lurking in hidden corners of my precious abode. I trust the drugs to do their duty for a long time. But as an optimistic realist I know that cancer cells can become resistant to any kind of therapy, and they know my body far better than I do.  It’s wise, therefore, to make plans with the understanding that circumstances can change.

In the meantime I forge on into 2014, not having known at this time last year if I would even be around to start watching Season 4 of Downton Abbey. But here I am, anticipating it just like so many Americans who don’t struggle with Stage IV anything.  Life always has uncertainties; I’m just reminded of that more frequently than most. The key is to find joy in the journey.

What do you think will bring you joy in the new year?


Bucket List

  • Posted on September 7, 2013 at 6:06 pm


Maybe I actually have time to create–and partially fulfill–a bucket list. Those 10,000 things to do before I die. Wouldn’t that be cool?

On my last oncologist visit the good doctor said she’s going to check my clinical trial protocol to see if I can have scans less frequently. Wow! Really?

Having less frequent scans would be such a blessing. Not only are the scans expensive and require extra trips to the hospital, but they involve a contrast dye to which patients can develop an allergy over time. I hadn’t considered the consequences of a constant barrage of chemicals and radiation to the system. Frankly, I didn’t think I’d live long enough to have to worry about the long-range effects of alien substances forced into my veins. What a good thing to worry about! I’ll take it! It surely beats thoughts of hospice.

The other item of interest that I learned at this latest appointment is that I’m the only one at Stanford left on this particular clinical protocol. I’m charting new territory for those who have or may get breast cancer. Maybe they can benefit from what is learned from my genetic material and cancer history. Maybe women like me with no family or genetic history who have aggressive breast cancer will have a treatment answer, a lifeline of hope for the future. The ramifications are startling.

Now back to the bucket list.

What do I want to do with my remaining time? Travel used to be so important to me. Now it’s way down on the list. Driving to my treatment center is exhausting enough. I’ve seen so much of the world through prior business and family trips that I don’t feel the need to explore yet another gorgeous place on this blue gem of a planet. I can google locales that catch my fancy; I can watch movies; I can read the blogs of my fellow breast cancer sojourners to see what’s happening in their respective parts of the world or on their travels. In other words, I can climb the mountains and traverse the valleys and rivers vicariously.

High on my list would be holding a grandchild for the first time. Or re-reading some classic books I haven’t touched since high school. Or having my backyard transformed into a garden of plants with low maintenance requirements but lots of colour. Or going out to eat or shop with a friend. Or playing Scrabble or Mexican Train with like-minded gamers. Or learning ukulele better so I can play solos with my fellow musicians when we perform at senior centers. Maybe I’ll even tackle Somewhere Over the Rainbow/It’s a Wonderful World with decent strumming and smooth chord transitions. Quite a tall order. But these are the kinds of strivings that rock my fledgling thriver boat.

What kinds of items would I find on your bucket list?

Living with Advanced Cancer

  • Posted on July 30, 2013 at 5:49 pm


Advanced cancer.

I have it. Does this mean I have advanced to a new level, acing an exam to get there?


I don’t have it–yet. Does this mean graduating to the next level, making progress?

I don’t think so.

Advanced cancer is a fancy moniker for metastatic or Stage IV cancer. Progression means the cancer has grown since the last scan. We patients live from scan to scan, like a frog jumping from lily pad to lily pad, hoping not to fall into the water looming dark and murky just outside the zones of safety.  And I haven’t even touched on the financial consequences of receiving this type of diagnosis, hopping from one insurance loophole through to the next.

As a clinical trial patient, I must follow the protocol spelled out in the contract I signed. That means I must endure a bone and CT scan every three months to see if cancer has returned or progressed. It’s not a death sentence, but it’s an edge-of-your-seat kind of existence, a life-long sentence.

How does one live with this kind of uncertainty? The best one can. My morning starts by taking pain medication, the kind that is a controlled substance. Who knew I would be doing a drug to which Michael Jackson was heavily addicted. Another pain killer I take every four hours. My day ends with taking more of these high-end pain relievers as well as heart, nerve, anti-anxiety, anti-nausea, and constipation drugs. Beyond all these meds, I look for symptoms that my cancer might have returned and journal any changes. I travel four hours each way to have a treatment every three weeks.

All of this necessary medication doesn’t bring me down, and my sleep patterns have been excellent. Activities with which I try to occupy/distract myself include playing ukulele, writing, hanging out with friends, playing games, and watching TV and movies. Most of the time these work. All of the time prayer works, and for that I give thanks to all those who have lifted me up.

Maybe my life at this stage can be summarized with haiku:

Cancer’s talon grips

Longing to take hold of me

Hope stuns it senseless


Bleak rain-filled daylight

Filters through clouds gray as stone

Praying hands heal sky


Hawks winging upward

Catching draft to soar beyond

Land on outstretched arm


Hope is the key to living “the good life” with this type of cancer. Good news can be found in all the new drugs coming out of cutting-edge research, changing the way doctors view and treat advanced cancer. Good news can also be found in the plethora of resources existing for those living with breast cancer that is not curable, from treatment options to clinical trials and financial support to discussion boards and support groups.

I may not like progressing to this kind of Advanced Placement class, but I’m learning how to cope, and striving to pay it forward. We patients are never alone, and never will be.


The Balancing Act

  • Posted on April 23, 2013 at 1:18 pm


A balancing act. The challenge of all Stage IV cancer patients.

How do we balance quality of life against quantity of life? How much treatment are we willing to endure to prevent the cancer from starting to grow again?

I am now off taxol, that traditional chemotherapy for breast cancer that can do a number systemically on all cells. I’m still suffering from fatigue and neuropathy in my limbs and digits. Loss of appetite plagues me. And some other effects that it pains me to enumerate.

Each day I wake up determined to do something productive in the morning, because by mid-afternoon I am ready to veg out in front of the flickering screen of images and sounds designed to entertain. What can I get done? Perhaps scan some old photos into my computer and reminisce about the good ole days. Or reach out to prune or reach down to yank weeds in the front lawn so the neighbors don’t wonder why this woman who looks so healthy can’t keep up a perfect-looking landscape. Or maybe do laundry and clean up a few rooms that I use regularly.

I occasionally attempt to make a soup, which may or may not be a smash hit with my taste buds.

The most soothing things I do now are to play ukulele and read or watch DVDs in bed. Or, as happened the other day, accept an invitation from a friend inviting me to a church party.  I wasn’t planning to come to this event as there might be limited seating or the food might not agree with me. There is always some excuse not to attend a function, especially in the evening when I am at my worst. But I am so glad I agreed to accept her challenge. The laughter, the seating that God provided out on the restaurant patio where the weather was perfect, the band that played all the oldies I could sing along to, the dancing (at least my watching it), the small talk, having the guitarist come over during the break and sit right down next to me.  What a trip!

Yes, I do resemble a clown in the circus. I can just hear the hawking: “Come see the skinny lady manage the tightrope act with no safety net!”  Yet, in many ways I do have a net in case I fall. The safety of friends, including one who puts me up and puts up with me when I have to go to the hospital every three weeks and others who invite me to their homes or other places, and the safety of my faith.

At least for now when the sun wakes me up I get up out of bed on legs and arms that can move, get dressed, and scrounge out a minimally appetizing meal even though I’m not hungry. The continual side effects definitely present a challenge, an adjustment, even a game changer. But so far, it’s worth getting up each morning to make a difference, if not in my own life, then in someone else’s.

Do you have activities that keep you motivated and make you feel alive?

Adjusting to Life Anew

  • Posted on March 7, 2013 at 5:30 pm

2013-03-01 17.45.18

“You Can’t Go Home Again.”  In his novel of that title, published posthumously in 1940, Thomas Wolfe exposed a community that shunned its hometown author. Taken in a different context, this message certainly is one I didn’t want to hear in the last few months.

So what has it been like to re-enter earth with a sense of normalcy?


When I returned home from my last treatment (after staying with my wonderful friend), I was greeted by the flowering plum tree in my front yard. It’s a welcoming sight, one of hope for the future. The tree was a sign that I needed to take care of my house, purchased last September, because I was going to live there for some time.  So while adjusting to the side effects of treatment, I am taking care of some “honey-do” items. Some of these tasks I can tackle myself, such as unclogging drains and oiling locks. But others require the expertise of the professionals.

A guy who installs blinds came in to give my house a sense of privacy. How the previous owners could live without any coverings on any windows is beyond me.

The cable TV guy connected up my new flatscreen, allowing me to enjoy TV after over thirty years without it. The thrill of watching Downton Abbey has not escaped me.

Then a specialist came around to make my garage door as easy as possible for me to open and close. It gives me a sense of order to have the house secure, yet accessible.

Tomorrow I expect a handyman, recommended by a friend, to take care of a variety of tasks that ordinarily would be handled by a spouse.  We’ll see how many he can take on and what he has to leave for a contractor specialist.

I try to focus on the hope of living in this new abode as I manage my symptoms: becoming cold as the afternoon wears on, tingling in hands and feet, and a general fatigue and achiness that can’t really be described. Food isn’t as enjoyable as it once was; in fact, my taste buds are quite fussy about what goes down the hatch. I also don’t experience hunger. It’s strange not to get body signals that alert me to the need for sustenance.  I have to rely on the clock.

I’m also taking care of needed professional services like eye exams, dental cleanings, tax preparation, and trust planning. All sensible, and collectively reflecting a cautious optimism for the future. I was relieved to discover this week that I don’t have glaucoma; I’m just a glaucoma suspect. Would that I were just a cancer suspect, too, but the diagnosis has gone way beyond suspicious.

The latest plans I am making are for my cremation. My rationale is that my family doesn’t need to worry about funeral details when they are grieving. Not that I plan to go away any time soon, but it’s good to get it out of the way.

As Thomas Wolfe said in his novel, “Make your mistakes, take your chances, look silly, but keep on going. Don’t freeze up.” I certainly make mistakes and take chances. Don’t we all? And I look silly sometimes, for example when I forgetfully wore my night hat to the dentist instead of my wig.  But I don’t plan to freeze up. I accept social and church invitations and extend my own as much as I can. In fact, not only can I go home again, but, as the songs go, “You’ll never walk alone” and “I’ll never walk alone.” And I know I won’t.