Tag Archives: cancer

‘Driving Miss Norma’ inspires many

I have been following the journey of Norma, the 90-year-old woman who lost her husband and learned that she had cancer in the same 2-week time span. While that would drive many of us straight to our beds, Norma surprised everyone by saying she wanted to hit the road.

Her family is taking her on a trip around the country, and Norma is having the time of her life. She chose to skip a risky surgery, and cancer treatment that would have left her sick and exhausted, and instead live out her final days on a grand adventure.

Miss Norma

Miss Norma, via Driving Miss Norma/Facebook.

 

When Norma told her doctor of her plans, he responded, “Right on!”

The world agrees, and the Driving Miss Norma Facebook page has gone viral, with thousands of people around the world following her journey.

I love her attitude. And for those who think skipping treatment is “giving up” the only thing Miss Norma has given up is the misery of uncertainty. Yes, the cancer she has will likely kill her. But instead of sitting around and worrying about it, or obsessing over treatments that may offer false hope, Norma is doing exactly what someone with a limited time span should do: experiencing every last drop of life she can, while she can.

We don’t have to wait until we are 90 and have a terminal illness to live like Norma. Sure, we can’t all necessarily hop into an RV and tour the country, but we can start carving out time to focus on what is important to us, instead of what others think is important.

 

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Medical studies are important, but results may be deceiving

As caregivers, we are always interested in reading the latest and greatest study on whatever condition our loved one is afflicted with. For me, I read a lot about Alzheimer’s and other dementia forms, as well as colon cancer, because those are the two conditions that claimed my parents’ lives.

Since I also work as a journalist, I know all too well how the latest studies become alarming headline fodder to generate page views. Recently, I wrote how a new study was completely misrepresented by certain media outlets, which ran with the headline, “Is Alzheimer’s contagious?” or some variation of that theme.

bacon

The scare study of the week is about processed meats and increased cancer risk. “Bacon is as bad for you as cigarettes” was a typical headline I saw today. But a deeper dive finds that the World Health Organization doesn’t actually rank what they determine to be carcinogens, so while cigarettes, processed meats, and asbestos may all be defined as known carcinogens, the risk of disease and death likely varies.

WHO does track death statistics and those would indicate that smoking still claims more lives than those eating hot dogs. So is eating hot dogs probably bad for you? Yes, if you indulge on a daily or regular basis. And while yet another recent study indicates that food can be addictive (pizza being the most addictive), cigarette smokers are likely to smoke many more cigarettes than people will eat slices of pizza or scarf down hot dogs on a daily basis. The more you are exposed to a carcinogen, the higher your risk of cancer, studies would suggest.

Another interesting twist on parsing these studies comes from the New York Times, which analyzes a study about how honey is no better for health than sugar. Despite the tantalizing headlines, the study group was alarmingly small and the study was very short-lived, making the results less reliable.

My mom disliked processed meats and red meat. She ate little meat, and was mainly a vegetarian. She didn’t smoke. Yet she ended up with colon cancer, which is the main cancer associated with these processed meat studies. So diet is no doubt important, but it isn’t everything. Sometimes, disease strikes at random.

You don’t have to be a health nut to know that bacon and hot dogs are not the healthiest nutrition choices. Enjoy in moderation, and instead of reading and worrying over the latest health study, get out and exercise or enjoy your favorite hobby.

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Memories of hospital visits

I came across photos recently of when my mother was first in the hospital, recovering from surgery after her delayed colon cancer diagnosis.

The photos were taken in the ICU, a day or two after her surgery. I thought they captured the conflicting set of emotions that family members experience when a loved one is in the hospital.
Joy mom hospital
I paced many a hospital hallway in those days. When I needed a break from staring at Mom’s frail body hooked up to so many machines, I would stand in the doorway and watch the hushed but high activity taking place on the floor. People moaning uncontrollably in pain, relatives leaving a patient’s room looking pale and worried, children laughing and playing, blissfully unaware of the sadness and fear surrounding them.

There are so many emotions one experiences during these times, from fear and anxiety to hope and even a few much-needed laughs. Hospitals are like other worlds, with their own time structures, rules and cast of characters. For those working there, it’s just another day on the job, for patients, it can be a matter of life and death. Visiting relatives get to see it all.
joy mom hospital 3
While you learn a lot about humanity inside those hospital walls, I hope to never be back inside one, or at least not for a very long time.

What lessons have you learned from hospital visits?

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Playing the waiting game with Death

My mother’s health took a big turn for the worse this week.

The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.

Mother's Day

Mother’s Day

For her sake, and mine, I hope that the suffering is not prolonged.

She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.

But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.

Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.

But her heart continues to beat hard and strong in her emaciated chest.

In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.

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One of those weeks caregivers dread

Last Monday, I tried to call Mom but her line was busy. This is not that unusual, so I didn’t think too much about it. A few minutes later, I received a call from an unknown number. By the time I Googled it and saw that it was the Lifeline number, the call had gone to voice mail. I immediately called back without waiting for the message.

Mom had slipped off the bed and fallen. She fell on her butt, thankfully, but was still sore and shaken up. Fortunately, she was checked out by EMS and seemed ok, so no ER visit was necessary.

Still, I fear it is the beginning of the “no longer can live at home alone” phase. Mom’s done pretty well this past week, all things considered, but the tricky part for caregivers is knowing when to make these key decisions for a loved one’s care.

Beautiful Elle, RIP.

Beautiful Elle, RIP.

At the same time that was going on, our 16-year-old cat was rapidly declining. A cancerous lesion on the roof of her mouth meant she could no longer eat without discomfort, even with pain medications. Sadly, over the last few years, I’ve become used to the euthanasia process. While thankful that we have that choice for pets, it is still brutally heartbreaking to have to make that decision.

My mom wishes she could be like the cat and just go on. She says she is ready and she is not afraid of what is beyond. She is miserable with being in constant pain, and having a loss of appetite and fatigue. The doctors are no closer to diagnosing her than before. Is the cancer back? She’ll have to have a colonoscopy to determine that, but at barely 100 pounds and weak, she’s in no shape for the preparation.

She also hates to be a burden on others. While certainly I can’t deny the stress the last few years have created, I don’t want my mother to feel guilt over something she cannot control.

With wry humor, I know that we are going to have to get a bigger shelf to hold all of our memorials, for people and pets lost over the years. It’s getting crowded up there.

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Caregiving tip: Change isn’t easy for seniors

I’m sure we’ve all heard of the saying, “She is set in her ways.” This tends to become more true as one ages. Our elderly loved ones have a certain schedule, or a certain way of doing things, and a disruption of that schedule can cause them great stress.

I’m a little like this already and I’m only 40!

But what made this clear to me was spending time with Mom this past week. We still have not figured out what is wrong with her, but we finally were able to see the specialist. He wants to rule out the return of cancer, so he has ordered a colonoscopy (ugh) and an EGD. Mom wasn’t thrilled with the idea of more testing and the preparation involved for it but knows it is necessary.

question mark box

If there is no cancer, her abdomen muscles can be surgically repaired so her stomach doesn’t protrude, which seems to cause her constant discomfort. But first, we have to increase Mom’s weight and strength. She is down to 100 pounds (has lost a shocking 30 pounds in 8 months.)

The specialist is a young guy that is into natural supplements in addition to medicine. While I truly embrace this approach, when he recommend my 77-year-old Mom start juicing, I had to force myself not to laugh. While I don’t doubt the benefits of fresh juice (though I do think the benefits are overstated and the high sugar and low fiber in juice is a concern), the doctor clearly needs to consider a patient’s age and situation when making care recommendations.

He knows Mom lives alone, and to ask a frail old lady to go buy a bunch of produce, wash it and process it through a juicer, and then go through the tedious clean up progress is totally overwhelming. I purchased her some pricey but convenient organic juice mixes instead.

The doctor also recommended spirulina supplements. After researching I’m on the fence about the benefits, but at least this is an easy step for Mom to take (comes in capsule form.)

He also recommended upping her daily Ensure drinks. I found a Boost very high calorie variety that has 530 calories. Also I got her a flavorlees calorie supplement that you mix into food. These are small steps that Mom can handle on her own.

Still, when I called her after returning home, she was overwhelmed by the new medications ordered by the doctor and the supplements I had sent. She said she knows everyone is trying to help her, but it is a lot to process.

And so it is. Just something to keep in mind when we introduce change to our loved one’s routine. Try to make it as simple and smooth as possible, and take time to explain why the change has to occur. Change can be hard for anyone, but as caregivers we can try to soften the blow.

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Fascinating study regarding cancer and Alzheimer’s

Because I had one parent who had Alzheimer’s and another parent who has battled cancer, I was intrigued by this study that explored the low rates of cancer in those with Alzheimer’s and vice versa.

maze

Researchers may have found a defect in a critical brain cell pathway that can lead to Alzheimer’s or cancer depending upon which way the imbalance of cell activity presents itself. This may help explain why Alzheimer’s patients have a lower risk of cancer and cancer patients are at less risk for Alzheimer’s.

Further studies will try to determine if activity can be boosted in the damaged cell pathways, which could potentially reduce the cognitive impairment in Alzheimer’s patients.

I always thought my dad was destined for cancer because of his smoking habit, yet he remained cancer-free, while my mom, who doesn’t have typical cancer risk factors ended up with colon cancer. While I’ve read of people who have had both diseases at the same time, it does seem pretty rare. Instead, we hear more about the cruel irony of the dementia patient who is otherwise physically healthy.

After all of the deaths and misery both of these diseases have caused, it would be wonderful to find an effective treatment for both of them.

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Dodging the health crisis bullet … for now

Recently, I wrote about my mom experiencing a mysterious pain in the same general area of her colostomy surgery. She had a few other vague symptoms that warranted further testing. The oncologist ordered CT scans of the abdominal area and the chest.

Unfortunately I had to get back to work so Mom had to manage the scan prep on her own. Even though Mom certainly has her eccentric ways, it is such a blessing knowing that she is still fully capable of handling things outside of her routine, such as going for medical tests. Yes, it was stressful for her, but at 77, she managed quite well.

mom-77-bday

The tests were done right before my birthday, with the results coming back the next week. I admit I spent a pretty good chunk of my birthday weekend mulling “worst case scenarios.” The colon cancer was back. The cancer had spread to another region. What would I do this time? I cannot afford to quit my job again. How would I afford Mom’s care.

Mom had a followup appointment with the oncologist on Wednesday afternoon. I was both eager to hear the results and dreading them at the same time. Finally, Mom calls. For once, she didn’t beat around the bush. (If it had been bad news I had a feeling she would have delayed the announcement.)

All of the tests came back normal. No cancer was detected. Mom was given a clean bill of health. Now of course that doesn’t solve the mystery of Mom’s pain (she insists on calling it a “discomfort.”) But the pain has not increased in intensity so far and it doesn’t stop her from going about her life.

So a sigh of relief, for now. As caregivers we are always ready for the next health crisis. But we also learn to appreciate those good days a bit more.

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Turning 40: My hopes for the next decade of my life

This Saturday, I turn 40. I’m not one to worry about wrinkles or grey hairs. My recent physical showed that I’m in good health for now.

But considering the health issues that have impacted my family over the last several years, I can’t help but worry.

ttronslien-8721

It is somewhat ironic that if you had asked me before my parents became sick, I would have chosen Alzheimer’s and cancer as the diseases I dread most. Little did I know that I would have to face both diseases head-on, with dementia striking my dad and colon cancer striking my mom. I always figured Dad would get cancer, being a smoker since he was 16. Mom doesn’t smoke and eats a mainly vegetarian diet, and she gets colon cancer. Go figure.

With Mom’s health in the balance again, it’s not really feasible to make concrete plans for my 40th year, let alone the next decade of my life. But then again, if life has taught me anything over the last few years, it is to live in the here and now.

Still, there are a few wishes I have that I hope I can make come true over the next decade of my life.

  • I want to write a book. Whether it be memoir, fiction, or self-help, I’m not sure yet. Maybe one of each! I’ve lit my creative flame again over the last few years, but I know it will take hard work and focus to keep it glowing. And yes, I do want to publish the book, even if I have to go the self-publishing route. I plan on signing up for a writer’s workshop this fall.
  • I want to visit my father’s homeland, Ireland. I had planned on doing this in my 30s, or as a special gift on my 40th birthday, but alas, that is not going to happen. But I can still make it happen over the next few years. Making that family connection is important, and I think will hold greater meaning for me now than ever before.
  • I want to continue and expand my Alzheimer’s awareness work. In particular, I would like to do more hands-on advocacy work.

I’ve been through many life-changing events over the last decade, and I’m sure I will face more moments, both good and bad, over the next decade. My 40th birthday wish is that I approach these moments with a bit more wisdom, and much more compassion.

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Playing the symptoms game

Today is Mom’s 77th birthday. With all we’ve been through as a little family over the last several years, I now make it a point to visit her in person on each birthday. It sounds morbid but really, for any of us, we don’t know if this birthday will be the last.

Things have been going along pretty well over the last year, in regards to Mom’s health. Her colonoscopy at the end of 2013 brought good results — a couple of polyps removed, nothing otherwise suspicious spotted.

In March, her CEA level was up just the slightest bit. But with no other symptoms, the oncologist saw no reason for concern, saying it it continued to rise on the next visit in July, then he would order a scan.

mom-77-bday

Over the last couple of months, Mom’s had some issues with her GI system which had returned to a remarkable functioning state after her two surgeries in 2012. Most concerning is the tightness she feels in her abdominal area. She’s also had some dizzy spells and tends to get tired quicker. Her appetite is not quite as strong as it was either.

So I’ve been playing the symptoms game since that time, Googling her symptoms and various combinations of her symptoms. Her symptoms are similar to both the first time she got sick (colon cancer) and the second time (hernia). Obviously, we’d all take another hernia over another bout of cancer, but the symptoms game is long and drawn out.

It can throw you a loop and be something completely unexpected.

Her stomach looks a bit distended when she’s sitting or standing but not anywhere near the level it was when she was sick. I felt her stomach when she was stretched out on the bed and thankfully it felt pretty soft to me, so I don’t think she has another colon obstruction. Yet.

Her oncologist appointment is this Wednesday. Unless he can obviously feel a hernia, Mom will probably have to go for some sort of scan and then more waiting around for the results. So the symptoms game keeps going on …

I hate playing the symptoms game, but I hate even more when the symptoms game ends.

Then you are faced with the diagnosis.

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