Tag Archives: Cancer

How do I talk to the doctoR-Guidance from a survivor?

Closer to Fine

“I went to the doctor”…..how do we get “Closer to Fine”-Indigo Girls 1994

Waiting room Hawaii Pacific Neuroscience

What do you think about in the car on the way to the Doctor’s Office? Usually, it’s Insurance Cards,Identification, parking validation…but the most important thought should be, Did I bring my notebook of questions? I would argue that the partnership with your doctor is the essential aspect in your medical care. I’ve found repeating questions over-and-over in my head has proven unsuccessful (and stressful). Unless I write it down before I arrive at my appointment, it’s like a trip to Target…”What was I going to get?”

My notebook goes everywhere with me!!

Bullet Journal 2021

Establishing a partnership in your care enables you to have more control in your treatment. Each time you walk into a clinic or hospital, bring your notebook and bring your questions. I start each appointment by telling the Doctor that I have some questions…followed by…would you like to see them now or after the exam? If this is intimidating…hand your doctor the written list of your questions.

Tripler Army Medical Center Mountainside Entrance

Knowledge is Power

cientia est potentia” -knowledge is power. The more information you have regarding your specific medical condition, the more you are informed of next steps you might take to becoming healthier (closer to fine). There is a caveat to this and I won’t lie…I spent some time looking up Survival rates for Stage 3C Ovarian Cancer. That was sobering. I don’t find fear to be very motivating, so I looked at the positive aspects of my treatment. Good medical care makes all the difference. Don’t sit in the back seat! (Arrested Development-Buster-“I sit in the front seat now!”)

“I sit in the front seat now!”

I chatted with my oncologist, Dr. Dietrich (who is now at the University of Kentucky Markey Cancer Center) to ask him his advice in all things doctor related. One of the very first things he said to me in 2012 was, “You are not a statistic.” The cancer statistics are actually at least 5 years old and the treatments have improved markedly since those statistics were published. I recently asked him a few questions regarding Ovarian Cancer treatment.

One, which is particularly relevant now, “What is the role of telemedicine?

Telemedicine

Covid-19 has brought an increase of telemedicine appointments. The bonus of this is reduced exposure to germs and easy access to the doctor. When is this most beneficial-When an actual exam is not necessary and you are reviewing scan results and discussing treatment options. I have found those check- in appointments to be so much more convenient via the computer. Plus, no parking and validation worries.

What about Exercise?

I walk when we and wherever I can! For me, exercise and a healthy diet give me a sense of control over my well-being. It’s also a huge part of my Relentless Forward Motion mantra. My 87 year old dad says, you gotta keep moving to keep the old man (or woman) out!

The National Cancer Institute recently shared this information on exercise:

How would you describe the state of what we know about the role of exercise for people with cancer and for long-term survivors?

In the past, clinicians typically advised their cancer patients to rest and avoid physical activity. However, what we learned from early exercise research in the 1990s and 2000s contradicted that advice. In fact, the field of exercise oncology—exercise and cancer—has grown exponentially in the past decade. There are more than 1,000 randomized controlled trials in this field. Multiple large epidemiologic and preclinical studies have also been completed, all of which have expanded our knowledge. 

Advice-It’s okay to ask….what would you do?

Doctors want a beneficial outcome as much as you do. They want you healthy and able to tolerate treatments. Can you ask for second opinion? The answer is…yes? Being comfortable in decisions moving forward is key! This is great news for patients who want to sit in the driving seat of their treatment!

What is the best question you ask your own doctor? Share in the comments!

Ten Steps for the newly diagnosed-Cancer

Eight years ago, my life was upended by the words you don’t want to hear from a doctor…”I am the cancer doctor.We need to get you scanned tomorrow! From the initial shock and awe until now, I am thriving and teaching and loving life! A friend recently reached out for advice….a What to Expect when you are Cancer-ing.

  1. You have a choice on how you show up! Cancer impacts almost every aspect of your life, but it cannot control your attitude. Identify yourself as a well person going through some health struggles. Choose your mindset and invite similarly positive people into your life. This is not the time to hold on to negative people or words.
  2. Make sure you know who you can contact for after hours questions. When your bones are in pain from a strong chemotherapy, you want to know who you should reach out to at 3 am. Your contact may be the nurse, a doctor, the on-call staff. You don’t want to be miserable and in pain while you search for that number. Put this contact in. your phone where you or a family member can access immediately. Nurse Jackie always told me not to suffer unnecessarily. Take your anti nausea meds…If the kind you are using isn’t working, ask for something else! I liked phenergen because there was a sleep component.
  3. It’s just hair…It will grow back. Many salons offer services where they will shave your head of remaining strays and help you get fitted for a wig. Salon 808 in Hawaii can help! Salon 808 owner Henri Ramirez offers this service for free! I was lucky to be able to have this service in 2012. Look around and check with the local salons. https://www.hawaiinewsnow.com/story/6621789/hairstylist-offers-heart-felt-help-to-cancer-patients/ (If you have long hair, you may want to make a donation to Locks of Love.
Friend Liz King donating her hair for wigs for cancer

4. Allow yourself to rest when you need to rest, but get outside daily to exercise. Even a short walk can restore your spirits and keep you going! Walking connects to all things good! (Wear high SPF because many treatments include sun sensitivity!)

Walking on the North Shore of Oahu

5. Wash your hands! My watch remind me every time I step into the house. If you don’t have that feature put a visible note on the door to your home. You’ll be surprised how long 20 seconds is!!

Apple’s New Series 6 Watch has a hand washing feature! Of course you can always just sing Happy Birthday Twice!

5. Write everything down-keep copies of lab and scan results! Bring a friend to appointments if you need help with the plethora of information. You always think you will remember, but it is so easy to forget. Also, ask for the drug information from the pharmacy. If you experience side effects, you want to know if this is normal or not! Often, you can get copies of your records from your medical facility. You never know when this will be useful! Again, you think you will remember it all…but maybe not.

6. Find support-Family, friends, Cancer Support groups. Those in the group will know exactly what you are talking about when you discuss Carbo-Taxol and Neupogen. Group members can share their experiences with similar treatments! Our group has started Zooming which is great in Covid times.

7. Relentless Forward Motion. Don’t focus on the massive journey ahead, but rather one hill at a time. Find a near term goal that you can focus on. Whether it’s eating healthy, going for a walk, reading a book, or listening to a podcast! Keep on going!

Ultra marathon preparation

8. Statistics are depressing! You are not a statistic. Those numbers are from 5 + years ago, and they are not YOU. Statistics are grim and they don’t set your mind in the right direction. STOP looking at them now.

9. Take pictures!?! Yes, take pictures! I actually wish I had more. When you are in the pits, you will get better. Your hair will grow a little, and then a little bit more. Don’t you want to see if it looks a little longer? The photos will serve as a document of your progress moving forward.

10. Gather information on cutting edge treatments! Make sure you share these articles with your physician. Cutting edge treatment for Ovarian Cancer is Immunotherapy. Is your doctor on the cutting edge? Ask for a second opinion. I listed to Dr. Death on the Wondery podcast this year and was shocked that despite sketchy procedures and treatments, patients continued to see this Doctor.

Reach out to me on Twitter @kymbalk and Instagram @mommykym

Cancerversary #4-It’s a Celebration!

 

Why celebrate at all? 

I celebrate because you cheered me on…because we made it through to the other side…because even in negative things there is a positive result! At my recent appointment, my oncologist mentioned (and seemed surprised) that I’d beat the odds …..but he doesn’t know the team I have! (FFF-Faith, friends, and family!)

People ask, “What do you get for your 4th anniversary?” (I saw this on Google, so I know this to be true) …Hallmark suggests fruit/flowers or juicers appliances. That’s great for marriages, but how should you celebrate cancer, or being free from it? Is there a correct day? Should I turn it over to Miss Manners to decide? Some choices:

  1. The day the you get gobsmacked by the doctor with the untimely advice that despite your healthy lifestyle you have stage 3C cancer? (August 6, 2012)
  2. The day they remove the cantaloupe muskmelon sized tumor that was nestled inside your healthy body. (August 16, 2012)
  3. The day the doctor decrees you to be #NED (No Evidence of Disease)…Woohoo! (May 30, 2013)
  4. The day it comes back and you have to do it all over again….surgery…chemo…radiation….humbug (Definitely not this one!) (February 14, 2014….yes, Valentine’s Day!)
  5. The day you get the next all clear! (completed one year of maintenance doses)(October 6, 2015)

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Melon Day it is!! August 16, 2012-initial surgery date

So I have officially chosen August 16th, 2016…four years from my first surgery…Melon Day! My “fruit” anniversary!

From this

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At Tripler Army Medical Center with Ben and Rachel

this…

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Hemonc Clinic at Tripler Army Medical Center with Renee

this…

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setting up for blood testing

and this…

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Radiation treatments at Tripler Army Medical Center

to this….

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Gingham Style….four years later! #summerofkym

I saw a pair of sneakers while trying to avoid political commentary in my Facebook feed by a company named Skicks. They create Ovarian Cancer and Breast Cancer shoes that help raise awareness. I thought that was the perfect 4th anniversary gift to myself!

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Available at Skicks.com for Breast and Ovarian Cancer

Best “fruit” anniversary ever!

What are you celebrating in your life?

Graduation 2016 “Sto1k6d”Mid-Pacific Institute

I was diagnosed August 6, 2012 with Stage 3C Ovarian Cancer and now almost 4 years later (3.789 years but who’s counting?)…I am watching my son graduate. Two surgeries, countless chemotherapy infusions (Carboplatin, taxol, Gemcitabine, and Avastin), and 25 radiation treatments, but our family finally made it. There are no words that can completely describe our joy…so I’ll do it with pictures.

Friday, May 27, 2016-Baccalaureate Service Central Union Church

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Baccalaureate at Central Union Church in Honolulu

May 28, 2016, the Big Day arrives-“light” showers and then sun on campus

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Mid-Pacific Institute Campus in Manoa Valley

In the words of AJR….”I’m Ready”

 

The stage is set….to hear “Benjamin Robert Roley”

 

 

 

 

 

Finally, the fun!

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Ben, Marvin, Kyler, and Christine

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Ben and Marvin…friends since 4th grade

and more friends…

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GK and Ben…friends since preschool!

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C. Roscoe has taught all three Roley kids!

And sister Rachel

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Rachel made the “Ben there done that” sign

Mom and dad…

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Ross and Kym and Ben

Traditional Lei giving Post Graduation….Grandparents…

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Grandma Joan

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Gpa Bob and Gma Shirley

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Good luck Ben!!

 

Mele Kalikimaka

Great news!! (definitely worth two exclamation points) Another clean PET scan! Diagnosed in 2012 Stage 3C…Three and a half years later…2 surgeries, countless chemotherapy infusions, 25 radiation treatments and a year of maintenance. Finals are graded and it’s time to enjoy the family and a much needed relaxation time.

Mele Kalikimaka to you and yours!

Stay tuned in 2016!

From this…

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PET scan at Tripler Army Medical Center

to this…

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Shopping at Pearlridge Center-Hawaii

 

What’s Up?

A few decades ago What’s Up? was one of my favorite songs and it accompanied me on many a walk?

….”trying to get up that great big hill of hope…for a destination

I am so close to my destination! Two more maintenance treatments of Avastin left! Trying to take a breath and reflect on it all. The ubiquitous “Journey” doesn’t quite do this process full justice. It’s been three years since I heard Dr. D introduce himself as the Cancer doctor…Three years since I met the amazing nurses Jackie and Cindy.

I’ve had two surgeries, 25 radiation treatments, and countless chemo treatments (Carbo, Taxol, Taxetere, Gemzar, and Avastin). Don’t forget the two Ovarian Oncologists, one rheumatologist, one neurologist, one Radiation Oncologist, and a sprinkle of radiation from MRI’s and PET scans.  Three years since family and friends rallied around me with support in all forms to beat this nasty disease.

Today, I do wonder why I am still here when many of my “cancer” friends are not. I couldn’t come up with an answer to that question, but I know that I’m thankful for my luck. I do think my positive attitude has made a difference in my survival. I’m grateful that I have an opportunity to have time and health to do the things that matter to me.

I took that thankfulness on the road this summer with a family trip to New York.  If you look carefully in the picture below, you can see The National September 11 Memorial and Museum. The view from One World Trade Center is amazing, but you can’t help but look down at the emptiness that was once the footprint to the Twin Towers. New York City was buzzing all around us, but nestled among busy blocks is an oasis.

The view from One World Trade Center...overlooking Ground Zero
The view from One World Trade Center…overlooking Ground Zero-by Mark Sugino

What fascinated me was the story of the Survivor Tree. This is the impossible story of survival of a single tree that was crushed beneath the rubble of 9/11. This was the one and only tree from the plaza that survived. The tree was nursed back to health and is itself a story of perseverance and resilience. As a side note, it survived Hurricane Sandy as well. That is one tough tree!

Survivor Tree

The take-away lessons for me and although I am a little weathered, I keep going. The permanent issues are livable, so I live with them….and survive. My message?

  • Don’t wait till you get sick to remember what matters
  • A “can-do” attitude is a much needed prescription for any struggle
  • When you get knocked down, get back up, and then do it again. Repeat as necessary.

What are you reflecting on in your life right now?

PET SCAN-I’m Ready!

Do you remember in the early 90’s when “Take Your Daughter to Work Day” became a thing?

Today, you (and the kids) get to come with me to my PET scan and see what it’s all about! First, get to the hospital early and look for parking! (Create a parking spot in the grass on the hill.)

Tripler Army Medical Center
Tripler Army Medical Center-No Parking

Rush to get to the Nuclear Medicine Clinic-then wait!

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Nuclear Medicine Clinic at TAMC

and wait…

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Waiting room fun with the kids

The day prior to the scan: Prep instructions for PET scans. Basically, no carbs, no exercise, no alcohol, no nothing. In my house, we call that a “potato” day because we just sit around and do nothing.

The morning of the PET scan. Nothing but water. Drink it from a fun mug though!

Lucy Mug
Lucy Mug from Jan E.

Fill out all the paperwork!

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Surgeries? Radiation? Chemotherapy? Neulasta?

Check blood sugar! They ask if you’ve been fasting and this will prove it. Numbers must be between 80-200 to proceed. Whew, I passed! (No food or caffeine after midnight!)

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Fasting range should be between 80-200. I passed!

Next up! Radioactive dye injection. The radioactive sugar solution will migrate to the areas of “hyper-metabolic” activity (in other words, seeing something light up is bad!)

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Glucose Solution of Radioactive Dye (note the nice carrying case)

I’ve already been to the chemo room to get my port accessed! I’m Ready!

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Port accessed and ready to go! “I’m ready.”

After the radioactive dye…more waiting…45 minutes for the dye to circulate throughout your system. (My 45 minutes turned into an hour.) 

Finally!

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Fancy new PET scan machine at Tripler

The whole process takes about 3 hours. The actual scan only takes about 25 minutes! Then, off to lunch!

…and wait for results!

http://www.yelp.com/biz/hale-vietnam-honolulu

Grey Sky-Talking about Cancer

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Grey Skies Ahead

I recently spoke with a Mid-Pacific graduate, Matt Hoe*, whose father passed away in 2014 of colon cancer. I admired his courage as he fought through the grief of his father’s passing and turned that pain into an award-winning film. His words about cancer, which I first heard at a chapel assembly, were penetrating: “If I were to give you one piece of advice, it would be to learn that abstaining from saying that the sky is grey does not make the clouds go away. It just means that you don’t get to talk about the sky.” Matt’s words resonated long after I heard them. Each month I go to an Ovarian Cancer Support group meeting where women from all over Oahu come to share their stories of surviving and fighting cancer. Many of the women are many years removed from their initial cancer fight and some are still in the thick of it. Some are bald, some wear wigs, some have scraggly fine hair (that would be me) and some have pretty luscious locks. Each month we have newcomers struggling on that shifting sand of a new cancer diagnosis. Cancer is relentless, and there is always a ready supply of new patients.  We don’t have all the answers for each other, but we share our stories in hopes that our own personal experiences and treatment will give hope to each other. For me, it’s comforting to know that many are living fully having successfully navigated this beast.

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Teepee-We prop each other up as we share our stories

We are like a big teepee-each of us is a stick that props up the total structure. It’s our collective nature that makes us powerful. Recently, there was an audible gasp when one of the women shared that she was entering palliative care (palliative care is primarily focused on providing pain relief rather than searching for a cure). She spoke of her situation matter-of-factly and at the time, I wished I could hug her pain away. Being among this group of loving and supporting women can’t cure the pain (or the disease), but it eases the burden of having to carry grim information all alone. We are also there for each other’s joys and triumphs!

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Hand reaching skyward!

How many times have you thought about someone who is fighting a major health issue (whether cancer of something else) and were afraid to reach out for saying the wrong thing? Saying nothing is equivalent to doing nothingKnowing that others are there to support you is a type of palliative care in itself. Matt continued, “For those of you who feel a storm brewing, I tell you this: learn to talk about the sky, and those crinked clouds of emotion that so often choke your voice. Feel the rain on your skin. I know that it’s scary to be vulnerable. But trust me, It’s scarier to be alone when it starts to storm.” Will you be successful when you reach out to those who are suffering? Maybe or maybe not. It’s the reaching out to each other than connects us all together.

Matt’s words were so powerful and they need to be heard. “And for those of you who have friends caught in that storm, learn to listen.  You might feel uncomfortable when they open up to you. You might be afraid to say the wrong thing, and somehow make the situation worse. But more often than not, people just want to be heard. They want to know that someone cares about them — that someone will be there by their side. The most comforting words that I have ever received were, “I’m sorry that it’s storming over there. That really sucks, but I care about you, and I’m here for you.”

Take the time to reach out to your friends who are facing grey skies–do it now!

Please watch Matt’s video: Separateness is an Illusion

*Matt is a recent graduate and an aspiring filmmaker who hopes to tell people’s last narratives in film

Are you still doing that?

The early thrill of a new habit wears off after about a month and according to Franklin Covey only 23% of people see their resolutions to completion. Any time someone says I’m never going to do “X” again, there is a part of me that wonders how long their forever will be.  When the doctor told me that my cancer treatment could be “forever,”  I wondered the same thing.  In college we studied Greek Mythology and Sisyphus (the man doomed for all eternity to push a boulder up a hill and then watch it roll back down again).  I wonder what his attitude was. How did he feel about it? Were some days better than others? Did he have coworkers with their own rocks to push up their own hills? Did they get together on weekends to commiserate over rock pushing? Did he try to get it done first thing in the morning or procrastinate till late afternoon? How do you handle those perpetual tasks that never go away?

Get this party started!

Today marks my 9th maintenance treatment of Avastin for recurrent Ovarian Cancer. I almost can’t imagine not seeing my doctor every 3rd Tuesday and my fabulous nurses Jacqui, Cindy, and Jodi every 3rd Friday. Jacqui is even in my “favorites” in my phone contacts. It’s like making the top ten of speed-dialed numbers!

I have my own little Ground Hog Day of doctor visits and treatments.

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Groundhog Day starring Bill Murray and Andie MacDowell

 I have a favorite chair!

Save my spot! Heated recliner chemo chair

And my own little TV and blankie!

Watching Living 808! They have TV up in here!

I told a coworker that I would be out Friday for chemo and she said, “Are you still doing that?” The answer is yes, but I’m pushing my “rock” in style. I may not get to choose if I push my rock but I get to choose how I’ll push it! We all have some form of rocks we’re pushing, but the trick is enjoy the journey. Plus, I get to see some pretty awesome people.

Professional vomit queen-navigating the migraines

Warning: Not for the squeamish. Step away if you have a weak constitution. Migraine sufferers will agree that migraines are no ordinary headaches. Unlike a broken arm, there is no visible indication that your pain level is through the roof. Taking regular pain relief for migraines (for me) is like putting a dropper full of gas in the car and thinking it will take you somewhere . Migraine relief is a much more complicated dance than that. A careful combination of prevention and treatment is my only solution. I should have known the stress of this week was going to trigger a headache, but I always naively believe that this time it will be different. (Remember the movie 50 First Dates? I am like the Drew Barrymore short term memory loss character.) I shouldn’t be surprised when they happen and the route they will take, but it always catches me off guard.  I choose to not think that it is stupidity, but rather optimism. Every migraine trail I take leads to the porcelain dumping ground. (I was going to add a vomit image, but that would just be cruel to all of us, so instead, I’ll add the movie poster) When the headache ends,  it is like a long journey completed.

50 First Dates
50 First Dates

I should be happy that I’ve only thrown up three times in January. One of the side effects I appear to be having from the Avastin treatment is sporadic migraine headaches. The first sign of the headache is a piercing high pitched frequency pain in the back of my head. (It feels like the frequency only dogs can hear that drives them crazy) Then the pain shuffles from back to front and back again.  I sit with an ice pack on my head and I speculate how long it will take till the vomit train begins. Today, I made it 45 minutes. Something about vomiting is cathartic (haha! Really! At least I made myself laugh) It’s like my body realigns and resets itself after that. The trick of getting the pain to go away lies in a careful distribution of Migraine meds, anti-nausea meds, and vomit.

Last time, it was after a fantastic meal of Baked Ziti (which I used to love…I’ve attached a recipe in case you still love it.) That time was the first time that I threw up through my nose. I had a noodle come out my nose. I guess there is a first for everything.

Baked Ziti
Baked Ziti

My sister was visiting us that time, and the next morning she asked if I had been coughing during the night. Yes, I “coughed” a lot that night. It really was good ziti, more so going in than going out. Sadly, I don’t see myself eating anymore Baked Ziti in my near future.

I have recently swapped out Imitrex for Maxalt in the quest to find more effective pain relief. I think the Imitrex works for me, but when it gets thrown up so soon, not as much. Maxalt can dissolve under your tongue and sneak up on the migraine before the vomiting begins (but dissolving pills under my tongue is slightly nausea inducing too). I always wonder at what point does the pain medication count. In other words…If you take a pill and throw it up 15 minutes later, has that pill been ingested into your system enough to work? Or, do you assume it hasn’t and does again.

Today’s headache infused my dreams and woke me with a jolt this morning. 

"Last night I dreamt somebody love me." Smiths lyrics
“Last night I dreamt somebody love me.” Smiths lyrics

The only direction this day can go is up.