There are so many articles and videos about what to and what not to say to certain people- Pregnant women, someone who just lost a spouse, first time parents, stay at home moms, working moms, and the list goes on.
Here is MY version of what to say or do when someone you love has just been diagnosed with cancer. There are actually full books on this topic-but like any thing not 100% universal. I’ve read to not tell a cancer patient they look, “Too healthy to have cancer.” I actually loved hearing that.
Say:
“I love you.” This is universal and easy 🙂 Cancer can feel extremely isolating, but knowing that people are still thinking about you as they carry on with their day-to-day is nice.
“Can I help you with _____?” Be specific, for example: When can I bring over dinner? Do you want me to watch the kiddos for an evening? Can I come over Wednesday afternoon if you want to get out of the house or take a nap.
“Let me know when your next treatment is, I’ll come sit with you.” HUGE! Having that friend or loved one sitting next to you is so nice. You can even Be that super friend and bring a blanket and a trashy magazine. Very few (if anyone) wants to be the alone person in the treatment room. Honestly, you don’t have to stay the whole time or even talk the whole time – just having you there is AMAZING.
Positive stories – DO NOT tell the story of someone that died or got this crazy infection after surgery. Seriously?! We are already scared, even if we don’t say it. Yes, this happens – A LOT!
If you stick your foot in your mouth (SO EASY TO DO) just apologize and move on.
DO:
Pray.
Send a card or a note- I still have all of mine in a box.
Call/text. Even if your reach out doesn’t get returned, try again a few days or week later. Even let them know in your message that the call doesn’t have to be returned, you just wanted to say hi and see how it was going.
Bring over dinner, do laundry. Try to be helpful, but not intrusive.
Please don’t complain about little things that the person getting treatment would be grateful for – needing your hair done was something I overheard in a treatment room once. Grrrrrrr…
Remember the whole family is affected, not just the one getting chemo. Think about the spouses and kids – this is REALLY hard on them too. A book, some golf balls, small toy, coloring book; these things can uplift in a matter of moments.
Do NOT start looking up statistics and diagnosis outcomes on Google – you can, and likely will, end up in some very dark places.
Cancer is incredibly hard on the person going through treatment and the ones that love them. Being there for your friend or the one you love is really all they want. I was absolutely amazed by the love and thoughtfulness that my family and I received when we went through diagnosis, treatment, and recovery.
I can speak from first-hand experience that I did lose friends when they found out I had cancer. I get it. Crummy, but I get it. Being a friend or loved one of someone going through cancer is hard. Watching them morph before your eyes is hard. Not knowing if they will be okay is hard. They may, and likely will, be a different person after they have traveled this road.
The reality is – being there for a loved one or friend is not always easy, it’s not always sunshine moments. Sometimes it’s just hot sad tears. But being that solid person that sticks around through the really hard and low times makes those laugh-til-you-cry moments even better.
When I was diagnosed with cancer in September 2013 one of the very first things my oncologist tested me on was my level of vitamin D.
It was off the charts low. This really should have been no surprise with amount I was working in a cube everyday and making sure to fully coat myself in sunscreen when I (infrequently) played outdoors. I had wrecked havoc on my level of the oh-so-important sunshine Vitamin. I was given a prescription to bring my level up to optimum amounts.
This deficiency is incredibly common. Not just for cancer patients but for most people that spend most of their time in doors and likely too much time in front of a screen.
Vitamin D is incredibly important for basically every cell in our body especially that of our immune system.
Think about cold and flu season, typically during the short day cold weather months where most are covered and bundled if outside at all.
But so many of us are scared to be outdoors or without sunscreen due to the fear of skin cancer. The reality is the threat of skin cancer is very real and very dangerous. I have met several skin cancer patients in treatment rooms getting very significant doses of chemo.
I am not advocating tossing the sunscreen! But what I am advocating is that we give ourselves a little time without it. Enough to satisfy our bodies need for the sun.
Think about that warm comfortable feeling when the sun first hits your skin. This feeling doesn’t last that long maybe 10-20 minutes (for fair skinned.)The best way I can describe it is therapeutic. Turns out that’s because it is! I am talking about the time before you start to get pink or hot, and definitely well before you burn!
The amount of sun time a person needs varies from person to person, just as our skin tone itself. Pasty folks like me may need as little as 15 minutes to get their vitamin D fix for the day where as darker skinned person may need a couple hours. The Vitamin D Council goes into depth about the variables. This site even has a suggested amount of sun time needed based on your skin tone and location.
I think he’s on to something here.
As another survivor told me, “It’s hard for cancer to live in a body getting a bunch of Vitamin D.” She has recently celebrated her 5 year cancer free status and throughly enjoys her time gardening outside and taking daily walks.
Here are my suggestions:
Daily get outside and get a bit of sunshine-drink your coffee outside, watch part of your kids game or practice in the sun, roll down the windows, open the blinds
Get your Vitamin D level tested*
Consider taking a Vitamin D3 Supplement
When playing outside all day-WEAR sunscreen/cover up!
As with most of the tests taken at your doctors office-shoot for optimum not for normal. “Normal” doesn’t necessarily mean healthy it’s based on the average person’s numbers including cube dwellers.
October is for pumpkins, the leaves start to change, and it begins to cool off down here in south Texas. It’s also Breast Cancer awareness month.
Daughter’s Halloween Costume 2013
Today I thought I would begin start the pink month a little early and share the cliffs notes version of my my diagnosis story.
The reason I changed the way I eat (and even look at food) was because in September 2013 I was diagnosed with Stage 4 breast cancer. At the time, I was 31, mom to a 1 year old, and healthy (so I thought.) My numbers were always in the good to optimal range despite my lack of working out and watching what I ate. I didn’t really think too much about my health in general. I didn’t even have a general practitioner.
My daughter was about 18 months old when I visited my OB. We were trying to have #2, and for some reason or another, my plan wasn’t playing out like I wanted. After the normal inspection, she gave me the green light and told me it may just take longer this go round. Then I told her about the lump in my left breast. “Nothing” she told me, likely cystic and something a woman my age should not worry about.
That was that, and on my way I went.
A few months go by, and this lump, which my doctor brushed off as “no big deal” was now something I could feel as it pressed into my arm when I laid down.
I decided to go back. There was something inside that told me I needed to. The last thing I wanted to hear was that I was over reacting, but I really knew something had to be going on inside.
I went back and saw the nurse practitioner. She agreed that I was not crazy and actually pointed out a second lump. She said that likely they were nothing but that she would send me for imaging to be sure.
The following week I went into imaging. My no big deal ultrasound changed from a chat session into something else as the technician started getting quieter and quieter. I remember her leaving the room and scrambling to get my doctor on the phone to order a mammogram.
All the jokes about the mammograms are justified. That was an experience I will never forget. I’ll leave it at that.
I then waited to speak to the radiologist. She was in a darkened room with a wall of screens. Those screens were the images I had just taken and to her they were “Very Concerning.”
If there was ever an “I told you so,” moment I didn’t want to have it was now.
In the following weeks more imaging, biopsies, blood draws, and tests. None of the results came back the way we wanted at the time. It was definitely cancer, and it had spread. Significantly.
Not your typical cancer patient
The moral of the story and why I share it, is because, likely I would not be here had I not followed my gut. I am not the “typical cancer patient”, and I am frequently reminded of that in waiting and treatment rooms. But I knew something was wrong well before I was diagnosed. I had to be the squeaky wheel to get something I knew I needed.
When it comes to your health, YOU have to take care of it. Not only before and after your doctor’s appointment but also during. SPEAK UP, if you have questions, ask them if you are not satisfied, do something about it. Be that patient that errs on the side of annoying.
I have learned so much about healthcare, doctors, insurance, and time. While there are no blanket statements for any of these things, what I can say is that taking care of yourself is your responsibility and hopefully a priority. No one can do it better than you.
Last Wednesday, we received a phone call at dinner telling us that we needed to get Erin and Charlie’s daughter, Elise, from the neighbor. Charlie had to call EMS because Erin had a seizure after a completely normal day at work.
Imagine, waking up to a regular schedule, getting ready for work, dropping the kids at school, working all day, returning home thinking about dinner, and boom, your world is black. This is what happened to Erin last week. A normal day, and then she awakened in the Emergency Room with no memory of how she arrived there.
As family descended, the discussion centered on a panic attack, because she had experienced a few over the past three months, or so we thought. In fact, as Erin and I worked on the conception of The Sweet Life Sugar Free the very first night, I witnessed her first “attack.” Her hands were shaking as she tried to type, and she got flustered. We took a break and discussed her day. She had experienced a hectic day at work and was not able to drink her water, take her supplements, or eat anything substantial. She drank two bottles of water and took some magnesium and potassium. She was obviously dehydrated, and possibly excited and nervous about starting our new venture. After a few minutes she felt better, and we got back to work as our girls played “Princess” in the adjacent room. Later that evening, as she was leaving the house, she came to get me because she couldn’t buckle Elise into her carseat or get her keys into the ignition of her car. She said she just “couldn’t get her hands to do what she was telling them to do”. I gave her yet more water, and she and Elise stayed for the night.
The next day, Erin was better and carried on as normal.
About a month ago, she called me from home early in the afternoon, and told me she had the same experience at work and had to leave because she couldn’t type. “My hands just aren’t working,” she said. This time she chalked it up to too much coffee and being nervous about her upcoming PET scan. Again, she slept and felt better the next day.
She was certain that both of these “panic attacks” centered around her anxiousness about her PET Scan on May 13, 2015, dehydration, lack of nutrients, and too much coffee. Makes sense, right?
I reread her post yesterday from May 15th, which discussed her clear PET scan, and how she was thanking Cancer for helping her have courage and appreciate the little things in life. She was so relieved when the scan came out clear just one short month ago. She closed her post by telling Cancer, “You are not welcome back!”
Fast forward to last Wednesday evening. I had Elise (Erin and Charlie’s daughter) and my kids at home, and my husband, Chip, returned from the hospital at 11:30 pm after sitting with Erin’s husband, and his cousin, Charlie. Erin was awake, and they were awaiting the results from the CT Scan. As soon as Chip walked into the bedroom, he received a phone call from his aunt in Denver that he needed to return to the hospital immediately…the CT results did not look good. There were two spots. I sat straight up in bed, and all I could think was, “No!” She had a panic attack, right? And, it certainly couldn’t be Cancer because she just received an “All Clear” on May 13th! That was less than one month ago! She was doing everything right! There was no way – the radiologist had to be wrong!
I got updates throughout the night without much information. As with many diseases, the waiting is horrible, terrible, endless. No one tells you anything. (Doctors, take note!) Chip returned home again about 6:30 am with no more information, other than Erin was scheduled to be transported to a different hospital. They had been waiting for hours for the transport so she could get an MRI which would show more detail in the brain. The hope was that the CT was showing something insignificant. She was to be observed by her oncologist and an awaiting Neurosurgeon. Everyone was just waiting, in holding mode, as if the clock remained still. Finally, she was transported about 8:30 am, on Thursday morning and taken to the MRI. Then, more waiting. At this point, more family members were on planes making their way to Texas.
In the meantime, Erin’s oncologist arrived and had taken a look at the CT scan. She told Erin and Charlie that it appeared the Cancer from the breast had taken root in the brain. Basically, Breast Cancer in the brain. I know what you are thinking…what about the clear PET scan? I hope you are as outraged as the rest of us were. The response was, “Insurance only covers a scan from the neck down.” I was stunned! Are you kidding me? They were told that day, for the first time by Erin’s oncologist, that 1 in 10 Breast Cancer patients with HER2 breast cancer, develop tumors in the brain! (Click here for more information on HER2.) Yet, they don’t scan for this? It is absurd! It was disturbing to all of us there that not only do they not scan the brain, but that Erin was never told to watch for symptoms or told that this was a possibility. All of these “panic attacks” she was having were small seizures caused by the tumors! Outrage, contempt, and anger seized every muscle and nerve in my body! No mention, no warning, no prevention – is that really what we call healthcare?
We also all learned that the tumors have more than likely been in her brain this whole time. Since the beginning of the story! I did not know that the particles in the chemotherapy cannot travel up the brain stem, therefore, leaving the brain as a free for all. The rest of her body is completely clean, and looks great, according to all the doctors. Seeing that the tumors in the brain are breast cancer tumors, they had to get there before she started chemotherapy almost two years ago since the rest of her body is cancer free. They were trapped in the brain without a chance of being eliminated by the chemotherapy and treatments she was receiving for the rest of her body!
Later in the day, the neurosurgeon entered the room and gave Erin the news that, yes, there were definitely two tumors in the brain, and there was an additional one near the brain stem for a total of three. She was scheduled for brain surgery the next morning at 10:30 am. Not much time to think, which was good for Erin, and probably everyone in the room for that matter! He was going to be able to remove the two higher tumors, but would have to do radiation for the third because it was too close to the brain stem. It is by the grace of God, and the advantage of a Ketogenic diet, that the tumors did not raise their evil heads until two years later, spread, or cause more havoc. Erin is still a believer! She was able to recover from her earlier surgeries before she had to do this one! This VERY big one! Whew, this was a lot to swallow! MoreCancer and Brain Surgery in less than 24 hours! We all thought she was fine!
Friday roles around, and thanks to many prayers, and an excellent neurosurgeon, nurses and staff, “the surgery could not have gone more smoothly,” according to the surgeon! Praises for everyone in that operating room, all of her caregivers, and more than anything, the strength of our amazing warrior, Erin! She is amazing!
The day after surgery, she was up walking, and ready to go home. A little impatient, maybe, but strong as an ox! She was not waiting or relying on anyone! In fact, she said to me, “I just really don’t like asking others to do things for me!” Really?!?! She had just come out of brain surgery! We are all still in awe at her strength and determination. It is going to take an army to get her to sit still and recuperate. She was able to come home yesterday, and already talking about paint colors, as she stared from her chair to her fireplace. “Goodness!” was all I could say and smile.
My what a difference a week makes, and what a week it has been for my dear friend! She is not just a fighter, but a warrior. She is not just a patient, but a wife, a mother, a daughter, a sister, a friend, and a mighty encourager for those suffering through cancer, those that have fought the same battle, and those that may in the future. If only the insurance companies could see through the patient to the person.
Erin stands without fear and encourages the rest of us! May this be an encouragement to everyone that the battle carries on, and Erin will fight not only for herself, but for all the others out there as well! Be strong you amazing woman! You will win this battle, if only by your own will and determination! I have no doubt, and I love you dearly! You ARE an amazing warrior!
And yes, this is Erin yesterday – after brain surgery just four day earlier! Amazing!!!
I endured that lovely PET/CT scan that I talked a little about in my last cancer post. The results are in and got the all clear. Ahhhhhhhh…
Door of the tiny room, guess what’s radiating-me
Really?! Inside the tiny room, an O Magazine from 2011, the Christmas edition. It’s either this or an AARP mag.
I am still learning so many things about myself and about this disease. I have grown and learned so much in the last almost two years. This is why I have decided to tell cancer:
Thank you.
I have to say, you are one Hell of a teacher.
Here are a few things you have done for me:
Giving me the nerve to quit a job I hated.
Making me truly healthier than I ever have been before or even cared about being. (Yay Keto!)
Teaching me to appreciate my daughter’s shoes on the wrong feet. And how, no matter what I try, her hair is going to look like she is in the middle of a tornado.
To hug as much as possible.
That all birthdays are kinda a big deal.
Laughter can get you through pretty much anything.
To be okay with tears, both the happy and sad.
How great it is to have super short hair.
To try to never say again, “If it were me I would…” especially if I have never experienced what the person is going through.
How breast implants have their pros and cons.
For moving me to Colorado, and allowing me to experience a “real” winter complete with negative temperatures and regular snow.
Now knowing that I have the best family, both blood and chosen, on this planet.
Deepening my faith.
Solidifying the fact that through thick or thin, sickness and in health, richer or poorer, long curls or bald, my husband loves me.
This list could go for miles…
Today, I am more confident than I have ever been. I now know what it takes to get through something like cancer. More often than not, I have to rely on the fact that I decided to live, and if that meant certain things had to be done, then I had one choice: do them.
Anyway, while this post may sound all sunshiney and rainbows, I can definitively state, Cancer, is not. There have been buckets of tears, pleas to God, decisions made that can never be changed, time stolen, and countless scars added.
I think the largest sucker punch I ever received was when I was told my diagnosis; Breast Cancer. But then to hear stage 4, there are no words. I remember looking at the little girl that was sitting on the couch, and prayed that she would remember me. Somehow telling people I had cancer, often felt almost as hard as the treatment. I literally had to tell my dad that I had the same disease that took his mother.
But, I am still here to celebrate the light on the other side of that tunnel, and that is what I am choosing to do today.
Everything happens and is given to us for a reason. (Sorry for the cliche.) I honestly believe that what I have gone through was something placed in my path for a purpose. Today, I have no idea what that reason is or was, but hopefully one day I will. There is no trial or person that crosses your path from whom you cannot learn. I guess cancer taught me that too…
Our selfie after my last round of chemo on Christmas Eve 2013
Thank you cancer for the lessons. Just one last thing, you are not welcome to come back.
By now, most of you know that I am a cancer survivor. I have been in remission for 18 months now, but due to the advancement of my disease (Stage 4) my doctors would like me to stay on “maintenance treatment.” This means that every three weeks I am back in the treatment room, feet propped up in my chemo chair.
This is not my favorite place on the planet. But honestly, and this may sound a little crazy, I get a big dose of grateful every time alone with the drugs. I am grateful that I am still here, grateful that I get to watch my daughter grow, and grateful for the support that I have been given through the whole dang thing. It’s often referred to as a cancer journey, and that is incredibly true.
I am also annoyed. As I look around the treatment room, I see candy dishes, bags and bags of fast food, and even route 44 Sonic drinks. Let’s be real here. These things aren’t good for those healthy among us, and yet here, in a treatment room, they are the norm.
I’m sick of it.
I’m sick of what is not being said. I am sick of the knowledge not being shared. On occasion I see the loved one that honestly thinks they are doing the right thing when they bring in the egg white bagel sandwich with baked chips and a large diet coke. There are mini snickers on the nurses counter and meal replacement shakes (with the three ingredients after water being corn syrup, sugar, and vegetable oil) right next to them. It’s truly amazing the gobs and gobs of fruit juice and crackers consumed around me.
This is all SUGAR people, and we cancer patients are not being told to stay away from the stuff! Heck, from all obvious angles, we are being encouraged to consume it!
Let me go a little further.
Every six months I have to get a PET CT scan to look for any new or re-occurrence of cancer. The whole processes stresses me to the core, but let me tell you a little about the routine.
I am told to fast for 12 hours; dinner the night before should consist of no sugar or carbs, heavy on the protein.
After check-in the fun begins. I get called back for my injection, my power port is not accessed for this 🙁 and that syringe is full of radioactive glucose. Yup. Radioactive. Sugar.
Why glucose? Cancer loves the sugar stuff and will light up like a Christmas Tree when they stick me in the machine.
After the injection, I am placed in a tiny room, alone, to ponder life for about an hour. That gives the liquid time to fully saturate my body. After the timer dings, I get to hop into a tiny tube in my massive hospital gown.
The tube part doesn’t take long, and then I’m off to worry about the results for the next 24-48 hours until I hear from my doctor or nurse. The waiting is the hardest part. I’m incredibly impatient – I call as soon as that 24 hour mark hits, and pester and pester until I get those results. Then I know that I have made it another chunk of time. I know it means that I will get that much more time.
So lets think about this, and lets try not to get upset, or frustrated, or angry. In effort to see the cancer in the scan, science has found the best thing to do is FEED IT. What is Cancer’s favorite fuel?
SUGAR.
Why in the world then, are we patients not being told to stay as far away from the stuff as possible? Instead, we are only told to steer clear of sugar and carbs just before a scan.
Why are we not being told that cancer loves any and all sugar? Sugar is sugar! Be it fake, natural, naturally derived, or whatever else. Sugar is sugar, honey is sugar, fruit is mainly sugar, starches and grains are also sugar!
I have yet to have an oncologist tell me that diet matters. Yet, I know they have to be out there…
Believe it or not, I have been told that “these people” meaning cancer people, my people, don’t want to change their diets – it would just be too hard.
I have a very hard time believing that.
Everyone in this room is a fighter. Most of these folks have seen multiple doctors, shoved in countless tubes, have been treated like pin cushions and guinea pigs, and watched their reflection age like something out of a movie. At least give them the knowledge and the choice.
Cancer patients, their friends, and their families need to know, and we need to tell them. There is more they can do for themselves and their loved ones than just get chemo and pray.
