Brain Cancer: Atypical symptoms, Part III

Glioblastoma multiforme (GBM) is something I never thought would affect our lives. While Bruce’s father passed away in his 50s from heart disease, Bruce’s mother lived to be one month shy of her 98th birthday. Bruce has been a regular swimmer for over 30 years; he runs a nursery, a business requiring movement and activity not seen in most 70 year old men; we hike from spring to fall every year. Bruce isn’t a drinker or a smoker, and we garden and eat very well throughout the year. This diagnosis is baffling.

What brings me here now, aside from Bruce wanting his story told, is that his symptoms were/are not typical of GBM. I’ve detailed what I saw in the fall that lead me to speak up and push our case with our PCP. Those posts, Part I and Part II, can be read HERE and HERE, respectively.

I continue our journey here because awareness about GBM needs to increase.

This brings me to surgery day, the day they removed Bruce’s 6 cm by 4 cm by 4 cm tumor.

October 15

Surgery began at 7:30 am, and the surgeon came out to speak with us at 1:30 pm. Bruce did remarkably well. We visited him in the ICU an hour after surgery. He was sitting up, talking, and cognizant of what had happened. We were told between 90 and 95% of the tumor had been removed. He informed me of the typical lifespan of a GBM patient.

October 17

Discharge day: we were visited by the neuro oncologist and the social worker before Bruce was released. I look back on this day as the day we may have been ill-informed. We were told to limit our Internet readings, to not seek out complementary treatments such as herbal regimens, even those that have shown promise. We were instructed to follow the standard of care (SOC). I wrote about that in a post called PERSPECTIVES AND HOPE.

I took that advice to heart. I think I was wrong.

October 29

Bruce has Atrial Fibrillation. One of his long time medicines has been the blood thinner Warfarin. While not all A-Fib patients require a blood thinner, Bruce has been taking it for many years, more as a safety net. It reduces the risk of a stroke. This day, the 29th, is the day they restarted Bruce’s Warfarin.

I now believe this may have been a near fatal mistake*.

November 18

The day before on the 17th, we joined family at my sister’s home to celebrate our mother’s 90th birthday. Bruce seemed normal in every way, talking with family, joking, and having a good time. On this day, the 18th, four of us went for a hike along the Clackamas river. We could not wait to hit the trail since hiking is one of our favorite pastimes.

Bruce very much enjoyed the day. At his request we turned back after an hour, hiking a total of four miles. It was the day I noticed his gait, his movements, the frequent catching a foot on a rock or root. Something was off, and it caused me to sharpen my focus.

November 19

Both chemo and radiation began. This was the one month mark after surgery, and time to bring in the big guns.

November 22, Thanksgiving Day

By this day, I was quite worried. Many of the behaviors and symptoms I’d seen in early September had come back. I was beside myself, fearing that the cancer had returned. Two things stick out: Unbeknownst to him, Bruce dropped his wallet on the sidewalk leading up to our son’s front door, and he tilted his dessert plate enough that some of the food fell off. He was regularly misplacing his wallet, keys, and glasses.

He began leaning in his chair; he did not sit up straight. I began noticing left-side weakness, not typical for chemo and radiation. His speech and facial features were normal.

IMG_20181122_201319960At one point, instead of placing his left arm on top of the table, he used his right hand to grab the sleeve of his left arm to lift the left arm onto the table. He began not using his left side. He could not floss. He could not tie his shoes. He had the hardest time hooking and unhooking the seatbelt. He’d catch his left foot when trying to leave the car. The left leg wasn’t strong enough to lift the foot over the car floor. He very slightly began to drag the left leg. He started using a cane. He moved slowly when he walked.

And yet, his sense of humor was perfectly intact. I asked Bruce and the kids on Thanksgiving Day to turn around so I could take this picture. THREE OF THEM literally turned around.

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November 26, 28, and 29

Bruce visited the nurse at the neuro surgeon’s office on the 26th and the cardiologist on the 28th. Neither noticed a thing. By the 29th, I spoke up at the radiologist’s office. I told the associate radiologist who consulted our regular radiologist; both suggested I might be seeing the effect of “radiation induced swelling.” Both suggested we increase the dose of Dexamethasone, a steroid commonly used to reduce swelling. Bruce doubled the dose of Dex on this day.

December 3

On Mondays at our typical radiology appointment, we had labs, a scan for positioning, and we saw the radiologist. If the doctor was not going to order another MRI, I would have taken Bruce to an ER. The increased Dex neither helped nor hindered; Bruce was the same.

Thankfully, an MRI was ordered, and fortunately for us, it was scheduled at a hospital on the next day. If not for the left-side weakness which baffled the radiologist, this may have gone another week or so before a doctor took action.

December 4

After radiation and a drive to the hospital, the scan revealed a very large hematoma above the previous surgical site. From that point, things moved at lightning speed; a nurse led us to the ER, with Bruce in a wheelchair, and by 4:30, he was in surgery, again.


*And about that Warfarin? We saw the INR, the blood clotting factor, rise to dangerous levels within a span of three weeks. A reading of 1 is normal for most people; for Bruce, because of the A-Fib, they wanted his range to be between 2 and 3. Here’s what happened:

  • Nov. 5–INR was 1.7
  • Nov. 12–INR was 2.6
  • Nov. 26–INR was 4.0
  • Dec. 3–INR was 4.3

Warfarin keeps the blood a bit thinner to help decrease the risk of a stroke. With Warfarin, the blood can also become too thin, increasing the risk of a bleed. With brain surgery, there is inherent risk of a brain bleed, but when Warfarin is added, the risk increases further.

We now believe that to guard against a stroke, the doctors started Bruce back on Warfarin to be safe. It could have actually caused the brain bleed and the need for that second, emergency surgery.


Once again, Bruce did not show typical symptoms of someone with brain cancer, or someone going through chemo and radiation.

Next: What happened in the ER that lead us on a goosechase over the Warfarin.

Brain Cancer: Atypical symptoms, Part II

One will often have experienced specific symptoms with a diagnosis of glioblastoma, an aggressive form of brain cancer. According to the Mayo Clinic, symptoms typically seen are headache, seizures, and nausea and vomiting. Others include memory loss, decline in brain function, urinary incontinence, personality changes, irritability, and vision issues. Of all the symptoms listed, Bruce had three.

I’m writing this right here, right now, because Bruce wants his story shared.

This fall when I noticed unusual behavior in Bruce, I knew something was very wrong. You can read the first part of our story and Bruce’s atypical symptoms in BRAIN CANCER: ATYPICAL SYMPTOMS, PART I.

What follows is a short timeline of what happened, how I responded, and the outcome. Not only is our story important, a couple of experiences trying to navigate our medical system have left me frustrated and aghast. Something as simple as getting information–or even a consensus–should not be so hard, but I’m getting ahead of myself.

My first recollection of odd behavior was September 8, but by the time September 25 had rolled around, I’d been watching Bruce every moment possible. I took videos, I watched, I asked others, and I took notes.

September 25

Since I was beside myself with worry, I sent our PCP a note, detailing behaviors I had been seeing. Having worked in the medical field for 34 years, I know the value of documentation (and the reason I avoided the phone). Bruce was to see her on the 27th for another matter, so I continued to watch. She discussed with Bruce what I had written; he came home with a “She says I’m fine” message from the doctor. I was pretty upset. She did suggest, however, that we see her together. In hindsight, I realize she knew I would not be put off. By this time, I’d convinced Bruce to let me do all the driving.

October 2

Together we saw our PCP to review my observations. Bruce is a charmer. He jokes with and teases everyone. Since he was seated in a chair when the doctor walked in, she did not see much of what I’d been seeing. She could not tell, for example, how difficult it had become for Bruce to get in and out of the car. She had no way of knowing his judgment was compromised while driving. She did not see how much sleep he now required. He “looked” just fine. Her diagnosis? Sleep apnea.

October 4

I tried to understand the doctor’s reasoning but it simply didn’t ring true. I can’t tell you how badly I wanted her to be right. But, I know this man, and the kids and I could not accept her assessment. What I saw convinced me that something was wrong, that this wasn’t about sleep. I was beside myself over what to do. A friend suggested I take Bruce to an ER where, based on the symptoms, they would perform an MRI.

Thirty six hours later, on the 4th, I sent our PCP another message, describing each and every odd behavior I’d noticed since she’d seen Bruce two days prior.

October 5

Late the previous night, our PCP sent notice she’d ordered the MRI. On the morning of the 5th, a Friday, Bruce and I both received a call from her office letting us know an MRI had been scheduled for October 10th, the following Wednesday.

October 10

After the MRI, Bruce and I were instructed to head over to the PCPs office immediately. I knew right then this was bad; no one needs to go immediately unless it’s bad. We received the diagnosis of glioblastoma multiforme, a grade four, very aggressive brain cancer. Our PCP was out of the office, so we received the news from her associate (my former patient). She left the room several times, to talk with specialists, in order to secure Bruce a spot on the operating table the following Monday. From this moment on, things happened at lightning speed.

We left the PCPs office with a prescription for the steroid Keppra to prevent seizures. We picked up the prescription on our way home. We told our daughter and called our oldest son.

October 12

You may remember reading in Part I that our son flew to Germany on September 8, the day I noticed the first of Bruce’s odd behaviors. This is our middle child and second oldest son, whose birthday is October 12 (his 30th). I had to tell him via email that his father had a brain tumor. We were unable to connect in a private call. I can’t tell you how hard that was, how much that hurt, to tell my child this type of news in this manner, on his birthday. From that moment, he busted his butt to get home to see his father before surgery. One flight was cancelled and another was delayed, but by 3 pm on the 14, Andrew (left), barely vertical from a lack of sleep, walked into Bruce’s hospital room.

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October 14, admit day, the afternoon before surgery

October 14

It was suggested that Bruce be admitted on the day before surgery in order to facilitate all that needed to be done; there were blood draws and scans and doctor visits. We agreed since, the next morning on October 15, Bruce would go into surgery at 7:30 am.

Since Bruce would endure yet another major event aside from surgery the next morning, and because it baffled the doctor, I’ll continue in another post.

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Hiking Oregon trails, July 2018

Thank you for reading, and blessings to you. ❤

Brain Cancer: Atypical symptoms, Part I

When I began Finding Merle, my first post was about my grandma and included a one-hundred-year-old letter. My love of family history led me to create an entirely new blog this year (THE MALEVOLENT MATRIARCH), but life happened and my focus has changed. One day, I’ll get back to Orah Myrtle Smith, my feisty great grandma and inspiration for the new blog.

For now, I’m home at Finding Merle to share our story. I’ve created a new category–Brain Cancer–where you’ll be able to read the ups and downs, the joys and sorrows, the story that is now our life. Bruce wants his story shared.

Aside from Bruce’s desire to help others, what I witnessed in early September and again by mid-November screams, “KAREN, THIS IS A TEACHING MOMENT!!” Why? Bruce’s symptoms were not typical. Read that again. Now I hope I have your attention.

For Bruce, and anyone wanting to learn, here goes:

September 8, 2018

This is my first recollection that anything was wrong. Three significant events happened that day. Our son flew to Germany for an indefinite length of time, we met up with my step-cousin Milton whom we’d not seen since 1978, and Bruce was acting extremely tired considering the light events of the day.

Bruce is used to quite a bit more activity, but he asked me a couple of times if we could go home, at 8 or 8:30 pm. He’s always been an early riser, but this didn’t make a lot of sense. Noted.

September 9-24

I watched Bruce like a hawk. With each passing day, I knew with every cell in my body that something was terribly wrong. Over these two weeks, I made mental and physical notes about what I was seeing.

The list of common glioblastoma symptoms include: headache, nausea, vomiting, confusion or decline in brain function, memory loss, personality changes, irritability, difficulty with balance, urinary incontinence, and vision issues (Mayo Clinic, 2018).

This is what I saw:

  • He’d nod off in the morning before leaving for work, after a full night’s sleep
  • He’d come in early from work and fall asleep in the chair, sometimes around 1:30 or 2 pm
  • He began driving 10-15 mph below the speed limit; before, he drove a teensy bit on the faster side
  • When driving, he seemed to be not in a fog, but behaved as if he was processing, thinking, or concentrating more. There was an air about him that wasn’t typical.
  • He started not completing simple tasks, such as closing doors. Picture each and every type of door or cupboard in your home left open. Garage doors, house doors, freezer door, vehicle doors…all had been left open.
  • He was confused in conversation, forgetting things I’d told him previously
  • He began misplacing his wallet, keys, or glasses on a regular basis
  • He’d pour a glass of milk, place it on the counter, and then pour another, forgetting the first
  • Plates and dishes held in his left hand were tilted, and food would fall off
  • Once, walking down the two deck steps, he nearly stumbled
  • Over the previous months, he began sleeping a lot longer each night than ever before. He used to go on six hours and work a full day without issue.
  • He seemed to move in slow motion. This one is hard to describe. He got in and out of the truck slower, he walked slower, he moved slower. He’s always had a lot of energy, so the slowness didn’t make sense.
  • The bank called one day after we’d stopped by to deposit a couple of business checks. An addition error had been made. He’s always excelled at math.

Of the ten symptoms listed by the Mayo clinic, Bruce had three. He showed confusion, short-term memory loss, and balance issues. That’s it. 

Think about that. Bruce never had a headache, never had a seizure, and there was no nausea or vomiting. Bruce only had three symptoms on their list.

Yet, from my perspective, nothing added up. This wasn’t my Bruce. These symptoms came on fast and while none were severe, there were many and they persisted. The sudden onset had me reeling. Something told me I was about to become a squeaky wheel.


This seems like a good place to stop. I’ll continue with our journey in Brain Cancer: Atypical symptoms, Part II. Bruce was far from being out of the woods.

A diagnosis of glioblastoma has changed our lives irrevocably. We want to share our story. A couple of months ago I nearly deleted this blog. Now, Finding Merle seems to be the perfect place to open discussions about a very important topic.

Blessings to you, and thank you for reading. ❤

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Scenic Montana, Bruce’s favorite vacation spot, 2017

Featured image: Mt. Henry, near Yaak, Montana, 2017.

 

The glioblastoma wife

Otis sits on my chest like he owns the place. He can be a real turd.

The radiation oncologist upped the dose. Bruce is losing his hair. On one side.

I was sad to learn our friend “Sherlock” finished his radiation treatments. I’ll miss Jim, too. He finished yesterday.

I try to exercise. I managed to walk fast for 12 minutes yesterday before the oncologist called.

I’d been trying to reach him for over a week. He can be elusive.

I wrote a blog post last weekend that probably pissed off my friends.

Before Bruce was in the hospital the last time, we had no washing machine. We have a new one, but I haven’t done laundry in days.

When the oncologist’s triage nurse returned my call, I was in Rite-Aid. Forced to talk in the store, I couldn’t take notes.

The night before, another nurse called when I was sitting in the back of a moving car. It was dark. I could barely hear her. I couldn’t take notes.

I was very angry last Saturday. I wanted to break something, as in smash a large glass window. I didn’t.

I ordered the next batch of chemo from the specialty pharmacy. It arrives Friday.

I take Trazodone to sleep. It mostly works.

Today is December 19. We decorated our tree last night.

We need new tires on the Subaru.

My eyes are bloodshot.

I can’t see my future.

And, I am grateful…

Bruce has energy today. He is mentally clear. He smiles.

My niece and our friends have kept a Meal Train going. If they didn’t, we’d live on noodles. And water.

Bruce had radiation today, #13. There are seven left.

I made a new friend at radiation, Rachel, who was very nice.

The staff smiles when they see Bruce walk in for treatment. It lifts his spirits. And mine.

Bruce and I feel more connected than ever before. We’ve been married for 35 years.

Cancer provides an opportunity to live. To see. To feel. To love. Much deeper and fuller.

This is hard, incredibly hard, and there isn’t another place on earth I’d rather be.

Otis can also be sweet. When he’s half asleep.

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What it’s like to be me

I follow Maria Shriver’s Sunday Paper, the I’ve Been Thinking, weekly posts. I follow Maria not because I know her, but because on a weekly basis, she seems to hit the target; she “nails it” with everything from family to community to world news. Maria tackles relevant subjects, and I find I am inspired by her thoughts. Today, Maria’s post is titled What’s It Like To Be You Right Now?

The title gave me pause, because, like Maria, I’ve been thinking.


It seems it has been a lifetime, but it was just ten weeks ago that our world crashed. My husband was diagnosed on October 10 with brain cancer, specifically glioblastoma multiforme. It cannot be cured.

When something like this happens, nothing seems real. I felt like I walked slower during those firsts horrible days, as if I was trying to move through water. I felt as if the world suddenly closed in on us, that there wasn’t sufficient air to breathe. In the wee hours, upon waking and remembering, the reality is crushing; it is that same time–every single day–the dawning that the nightmare is inescapable.

People are interesting, and I mean that in the most respectful* way. Most folks want to be helpful, some ask what it is that we or I need. I know their hearts are in the right place.

But the truth is, most people don’t fully understand. Through no fault of their own, they can’t and they don’t. Phrases like, “I totally get it,” or “I understand,” or “I know” seem inappropriate and even abrasive. Probably the very worst offering is, “If there is anything I can do, please let me know.” A very close second is total absence.  People “don’t know what to say” so they stay away completely. This is the worst hurt imaginable.

Since this needs an explanation, I’m writing right now, today.

Again, people mean well, and my intent is not to hurt. Our friends have pure hearts, otherwise they wouldn’t be our friends. However, resources and education are sorely lacking with respect to how to treat people with terminal cancer. Sadly, most of us don’t know–how can we?–unless or until it happens to us. We need guidance.

Without offending others, I hope to make a little headway with this, right here, right now. Below are a few examples of recent interactions, how they can be avoided, and how we all can truly help a hurting friend.

  1. If there is anything I can do, please let me know.” In times of crises, folks are hurting and scared-out-of-their-minds. They CANNOT articulate what they need. Period. Solution: Just do it. Don’t ask. Show up. Be there. Examples: Leave a plate of cookies on the porch. Come over and mow the lawn. Bring a few groceries–most people still need milk, eggs, and tp–just make it happen. Tell me you are our ride to the next appointment. Leave a bottle of wine on the porch. Text me with hearts and warm wishes. Brighten our day with a bouquet of flowers. I can’t begin to tell you how much your initiative matters. Remember, we are unable to reach out.
  2. When someone says, “Whatever you need, I’ll make it happen” but when asked, I hear excuses. I asked a friend to handle something but heard, “I’ve never done that before” and “I’ve got a lot going on right now.” I kept silent, but my thought was, “We’ve never done brain cancer before (and you offered, and I really need your help).” Help was declined after several assertions to me that “anything you need, I will make it happen.” Solution: Your honesty about your willingness and ability to help matters most. It goes a very long way.
  3. Please don’t ask, “How are you doing?” Of course you want to know and we know you mean well–besides, we need people we can talk with–but before you ask, please pause and consider the nature of this question. You must be able to imagine how we are doing. When someone has terminal cancer, it isn’t possible to look at the world the way you do. Our joy has been momentarily dashed, and our hope is elusive. In our household, time is of the essence. Read that again. Solution: Send well-wishes that we have a great day.
  4. Avoid sending photos of people we don’t know, i.e. your grandchildren. Avoid sending stories of their cute antics. These things do not make us smile. They do not brighten our day because, as cute as they may be to you, it simply isn’t possible for us to find joy in people we don’t know, have never met, or never see. Solution: Wish us a very good day.
  5. When you can think of nothing to say so you stay away, the hurt we feel is immeasurable. Friends whom we thought would be there, even for well wishes, are not there; folks have disappeared. I understand it is easier to stay away and watch from afar, to read news and updates through email and social media posts. As time marches and as our reality changes, however, writing email and social media posts to update people has become harder and harder. I’ve stopped making social media posts about our life (in fact, I deactivated my FB account). I’ve trimmed the email list to immediate family and a handful of close friends. Solution: Please, send well wishes anyway. It means the world for us to hear from you. Right now, we are hurting and we need normal.
  6. A long time ago, two people close to me were diagnosed with cancer. I was in this same boat. I know what it feels like to be tongue-tied, and to want to stay away. I offer insight because now, I am on the other side.

That, Maria, is what it’s like to be me. Each day I wake up and pray that my husband will have a good day, that the medicine and treatments continue to work. Sadly, he was rushed into surgery December 4 due to a hematoma that developed above the previous surgical site. He came through amazingly well. Three major surgeries this year, and he remains the most positive man I’ve ever met. His attitude buoys me.

Through this post, I hope to educate and help those affected by and those in the cancer world lovingly move forward. A painful example of the lack of awareness about brain cancer stems from the plethora of resources and funding for families affected by breast cancer (to name one); resources and help for families affected by glioblastoma and other brain cancers is far less. Sadly, the treatment for glioblastoma hasn’t changed very much in the past 20 years, yet the outcomes are about the same.


In life, we are challenged with a variety of new experiences. A very good man recently said the following.

Life is full of adventures. Some are thrust upon us and others we choose. This one wasn’t of our choosing, but I aim to make the best of it. I’m not done.” 

~my husband Bruce

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hiking Montana, 2017


*There may be friends whom my words offend; that is not my intent. Instead, my hope is to offer insight, to shed some light on those affected by cancer, that we all can move forward with caring and loving behavior towards those we love, towards those who are hurting. Blessings, and thank you for reading. ❤

We. Are. Live.

Hello, again!

I hope this finds you all very well. 

Last week I introduced you to my new site, The Malevolent Matriarch.

Well…

We are live and ready for readership! 

Here is the link to my new blog: THE MALEVOLENT MATRIARCH

Please pop on over and take a look, and don’t forget to follow my new site!

THANK YOU, and Welcome!

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The Malevolent Matriarch

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