Tag Archives: cancer

July 18, 2014 · 11:02 am

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.

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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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July 6, 2014 · 7:00 pm

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.

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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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December 13, 2013 · 10:41 am

The gift of guilt

I’ve been thinking a lot about guilt lately. I guess it started around Thanksgiving time. I reflected on this time last year, and how upset and frankly selfish I was, when I saw that Mom was sick again and knew I was going to be stuck in New Mexico performing Caregiving, Round 2 instead of being home with my family. I think I was just burnt out from the past several months, spending all summer and fall tending to Mom’s needs. By November of last year, I desperately wanted a return to normalcy, but I didn’t get it. It didn’t help that Mom felt lousy and was in a fighting mood.

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Fortunately for Mom, she has been able to wash all of these bad memories from her mind. Sometimes I resent her for not remembering all of the ugly things she said or did, but then I realize that it would do me good if I could also cleanse myself of these toxic thoughts. Mom has apologized and says often what an amazing daughter I am and how much she loves me, so our relationship is fine. It’s me that needs fixing now.

I also still harbor guilt about not coming to Mom’s aid sooner, the first time she was sick. I knew almost from the get-go that it was probably cancer. Mom was doing all of the right things, going to the doctors, but she lives in a small town and they were taking their sweet time in determining a diagnosis. In the meantime, I called Mom ever day, great, but she was getting sicker and weaker with every passing day. I had a new job that I wasn’t entirely thrilled with, so I didn’t even have work as an excuse. I just didn’t think I could handle another parent being sick so soon after Dad’s passing, which was just six months prior. So I waited three weeks before finally visiting her. I shudder to think if I had waited a week, even days longer.

If Mom’s cancer had been diagnosed sooner, her surgery may not have been as complex and she probably would have been treated in a hospital near her home versus being transferred over an hour away. I could have stayed at Mom’s condo for free instead of all of those nights in hotel rooms, so I wouldn’t be saddled with so much credit card debt now. Maybe she would have recovered quicker and I would not have had to quit my job (a year later and I still have not been able to find full-time employment again).

But then I think about the positives of the situation. First, if Mom had recovered quicker in the hospital, she may never have developed blood clots. It was an unfortunate complication, but if it hadn’t happened, I would not have taken seriously my 23 & Me genetic testing results that says I have a 60% higher risk of blood clots than the average person. Now if I land in the hospital for an extended amount of time, I will demand preventative measures to reduce my risk. This new found knowledge could potentially save my life! (As an aside, I think it is ridiculous that the FDA is trying to shut down 23 & Me’s genetic testing kits. All they offer is information, which they already indicate may not be 100% accurate. It is up to the user to decide how to proceed with that information.)

Another positive: If Mom had recovered quicker from her first surgery, her oncologist stated she would have started her on chemo. This would have been a disaster. When Mom was just starting to feel better and getting her strength back, she would have been knocked back down again. So far, she is doing well without the harsh followup treatment. (They found three polyps during her colonoscopy exam; results will be in on Monday.)

And yes, I’m still grappling with not being there for Dad during that last month of his life. I know all I can do is share my experiences and try to help others find the light as they make their way through the murky, treacherous swamp that caregivers must wade through.

How do you cope with caregiver’s guilt?

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December 1, 2012 · 8:43 pm

Living with lurking symptoms

Many of my posts lately on this blog have been about the similarities and differences between my parents’ healthcare experiences. Today, I’m noticing a similarity of sorts. Despite my dad suffering from a mental disease and my mom suffering from cancer, there’s the same black cloud when it comes to the appearance of dreaded symptoms.

Before Dad moved to the latter stages of Alzheimer’s, he would have good days and bad days. Sometimes, my mom would even tell me that it was a good week, or at least an uneventful one.

And that’s when you strive for when you are ill. Let’s keep things as boring as possible, right? Now Mom has a hernia and we have been told by the doctor that it could slip in and out at will, and Mom has no control over it. If it slips into the wrong place, it can make Mom sick and cause her severe pain.

So just like with Dad, there’s a black cloud hanging over the house, and I walk on eggshells, hoping and praying the hernia doesn’t act up so that Mom can avoid emergency surgery. With Dad, it was his mind that was totally unpredictable. The symptoms of ill health can rear their ugly head at any moment, and that’s a special kind of torture all of its own.

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October 1, 2012 · 9:10 pm

What would Dad think?

Mom has posed the question to me lately: If Dad were still alive and didn’t have Alzheimer’s, what would he think about her being diagnosed with colon cancer? I’m sure he would be surprised, considering he was the almost lifelong smoker and Mom lived a pretty squeaky clean life. I also don’t think Dad would have been able to accept the caregiver role. Let’s face it, sometimes stereotypes are correct, and women generally are better and more natural in the caregiving role. That doesn’t mean that there are not wonderful male caregivers and females who would run from the caregiving role. I myself would never have imagined myself in a caregiving role. Maybe for animals, but definitely not for people. But here I am, and doing a decent job. (Mom and I are reaching the point where we are getting on each other’s nerves, but that’s understandable after a month.)

My parents long ago, before disease caught up to them.

I’m sure Dad would be concerned and worried and would faithfully drive Mom to whatever appointments she had to go to. He would go out and get takeout food for Mom. But I can’t imagine Dad jumping in and helping with Mom’s colostomy bag. No way! And that’s not necessarily a criticism, but just the way that I see my parent’s relationship playing out if things had ended up differently.

I think Dad would have been scared to death of losing his rock. My mom pretty much managed my dad’s entire life so I think he would have done everything he could to keep her around. He would have been lost without her. Mom is more capable of managing on her own, but there’s a part of her that is still lost without Dad.

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September 15, 2012 · 8:41 pm

What would your parent do?

Mom is going for tests over the next couple of weeks that will let us know if her cancer has spread. We’ve been talking a lot about the pros and cons of chemo. Mom is an optimist and a fighter, but she also wants a decent quality of life. Still, I think she will probably at least try chemo to see if she could tolerate it.

That made me think about Dad, and what he would do if he were the one in my mom’s shoes. As I’ve written before, Dad avoided doctor’s visits like the plague. But he did pull through his emergency gallstone surgery and dodged death a few times over the last year of his life.

I can’t imagine Dad living with a colostomy bag. He did have urinary issues at one point which required a catheter being inserted and Dad wearing a urine collection bag attached to his leg. I think he had to wear it 1-2 months. Mom did all of the draining duties. Dad wasn’t the best patient, but he grumbled his way through the ordeal.

Mom is grinning and bearing it with her colostomy bag. She manages to crack jokes about it while we are dealing with it, but she’s also admitted it’s depressing to know she may have to deal with this for the rest of her life.

But Dad? I guess if Mom was here to take care of his colostomy bag, he would grumble his way through it. But chemo? Forget about it. I think Dad would have holed himself up in his bedroom with a pile of library books and refused to even meet with an oncologist.

It’s interesting when the two people who brought you into this world have such opposite personalities and perspectives on life. It also makes me wonder how I would react if faced with a similar situation.

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September 14, 2012 · 9:26 pm

Disease a hitchhiker

I’ve been following Kathleen Cohn on the Cowbird storytelling community as she writes about her husband’s cancer journey. I started following her stories before my mom was diagnosed with cancer, but now it hits even closer to home. Her writing is eloquent, honest, heartbreaking and hopeful.

The way their doctor described her husband’s rare cancer really struck me, and seems to apply to other diseases as well:

“Along the way we picked up a hitchhiker but managed to lock him in the trunk.The goal was to keep him in the trunk. Sometimes he may get out of the trunk, and into the backseat, but we needed to keep on top of it so that he didn’t get in the front seat and grab the steering wheel.”

Certainly that can apply to cancer but also to Alzheimer’s disease. Dad had his good days and his bad days as he tried to keep control of that steering wheel controlling his life. But eventually, that dementia demon escaped the trunk, crawled over the back seat and took control of my dad’s life.

Mom doesn’t drive, but she is the world’s worst backseat driver, so I wonder how she will fare against her hitchhiker.

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September 8, 2012 · 9:35 pm

When parents wear diapers

As I said previously, I’m getting a taste of what Mom went through with Dad. I’m not sure what’s more difficult to bear: when a child has to care for a parent or when a spouse has to care for a spouse (with dementia).

Now Mom asks me whether her diaper needs to be changed. We grow as close as the mother-daughter relationship can when dealing with the colostomy bag.
When you’ve dealt with that, well, you’ve earned your dutiful daughter sticker. 🙂

So far I’m hanging in there, though I do worry the stress of today will catch up with me tomorrow or next week or next month. But if my mom’s cancer or my dad’s Alzheimer’s has taught me anything, it’s to be here today.

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September 6, 2012 · 8:01 pm

A parent comes home

Well, Mom is home. There were times when I thought I would never write those words. We have been through so much in these past two months.

Dad was never able to come home, but then, with his dementia, home was lost to him. It was lost to Mom as well for awhile, but happily she seems comfortable being back at home.

Of course, I know more dark clouds probably lurk on the horizon. Is there still cancer in my Mom’s body? That’s the next bridge we have to cross.

But today was a good day. And that’s what matters the most.

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