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My Cancer Story
It’s taken me four years and seven months to write this. I spent a lot of time writing in my head, but a couple of months ago, I finally got the courage to start typing it out. Now I’m really excited to share it, which feels good!
I wanted to wait to write this story to have a good perspective on what happened. What I went through was so traumatic that it’s taken years to process… and I’m still processing.
September is also Leukemia and Lymphoma Awareness Month, so I wanted to do something to highlight this cause. This year finally felt like the right time to share my story.
I’m sharing to help others going through this and to help their support people understand what they’re going through.
I would never have been able to write this story well while undergoing chemotherapy. My brain felt like a slurpy – I don’t know how else to describe the feeling! It’s called “chemo brain,” and it’s like your brain is mush. Take “mom brain” and “pregnancy brain” and multiply them x1000 and that may give you an idea of what your head feels like as your body metabolizes highly toxic drugs.
You’re probably also wondering how someone so healthy got cancer…I’ve got a few ideas on that, but let’s start with the diagnosis…
It was Saturday afternoon, and I was out to lunch with my husband and six-month-old son. We actually were in this, now hilarious but, at the time, very awkward situation trying to avoid making eye contact with our next-door neighbors (that’s another story in itself) who were at a nearby table in this small local restaurant.
Anyways, my phone rang, and I didn’t recognize the number, so I let it go to voicemail.
I listened to the voicemail on the way home once we got out of the awkward restaurant situation. It was Melissa – the nurse practitioner I had just seen for a physical at Vine Medical Associates.
I tried returning her call but had to leave a message.
One of my favorite parts of my story is that I wasn’t even supposed to get what turned out to be this lifesaving physical.
When I called to book an appointment in early March, I was told Melissa didn’t have any openings until May. When I was on the phone, this little voice in my head said, “Just say you’re sick.” So, I said, “Well, how about this? I’m sick with a cough! Now when is her next opening?”
I felt so snarky, but it’s a good thing I listened to that voice. I got in just in time.
I wanted the appointment for a few reasons. My biggest concern was nutrient deficiencies because I was six months postpartum and exclusively breastfeeding. I wanted to get all the nutrient-related labs I could and a thorough thyroid assessment.
But looking back on it, I did have a cluster of weird symptoms…
I had a rib that kept popping out of place – it was painful and had happened twice. After the second time, my chiropractor suggested I see my doctor.
I had also told my chiropractor about this funny feeling I had in my heart. It felt like bubbles were inside of it sometimes. Again, he recommended getting that checked out by my doctor, too.
When does a chiropractor tell you to see a conventional doctor?
I was also having night sweats. I had assumed since I was breastfeeding for so long, I had some hormonal imbalance that was sorting itself out. Looking back on it, though, they were really bad night sweats. I’d have to change clothes and find towels to put on the bed so I could go back to sleep.
And I did actually have a cough. It was a dry cough, so I was like NBD. Right!? Well, actually very wrong. Usually, if I have a cough, it’s a congested cough when I’m sick with a cold, and I knew I wasn’t sick because I felt fine (I might have been tired, but I also had a six-month-old).
None of these symptoms stopped me from doing what I needed to do. Also, they all seemed explainable, so I didn’t put much thought into them. Looking back on it now, these were clear signs something wasn’t right…my body was asking for help.
During my appointment, Melissa recommended I get an X-ray to ensure my rib wasn’t broken. I didn’t really want to, but I talked to my mom, and she convinced me to have it done “just get it over with,” she said, “that way, it’s not hanging over your head.” It’s a good thing I did.
I remember being in my backyard when I finally spoke to Melissa that Saturday because it was one of those “I’ll never forget where I was and what I was doing when……” moments. The first thing she said was, “Jenny, you need to be at Roswell Imaging Center at 8:00 am on Monday, I’ve called every imaging lab in North Georgia, and none of them are open today. The x-ray showed you have a very large mass on your left lung, and we need to figure out what it is right away.”
I asked what she thought it could be, and of course, she wasn’t able to really know, but she gave me a list of a few things it likely was, and none of them were good.
My husband could hear the conversation because he was also in the backyard – he was fixing our outdoor gazebo, and I had sat down with Andrew so we could watch (home projects at our house are popcorn-worthy events). 🍿
We both knew something was likely very wrong. …we decided not to tell our parents yet because we didn’t want to give anyone anything to worry about until we knew what to tell them.…we tried not to Google anything…
I went upstairs in an attempt to do laundry and act normal, and I couldn’t do it. I was in complete shock. Frozen...I went back downstairs and called my mom...
I really don’t remember what happened that Sunday, but Monday at 8:00 am, I was at Roswell Imaging Center getting my CT scan.
I remember that Tuesday, I hadn’t heard anything about my scan. I was the most scared I’ve ever been in my life. I was so scared that I couldn’t get out of bed – it felt like the only safe place to be. I called my mom, who was on our doorstep within 24 hours.
As soon as she showed up, Melissa called and told me the CT scan showed what was likely lymphoma, and she was giving me the name and cell phone number of the oncologist they were referring me to…right as he beeped in on the other line! He was calling me! I still have his number and text him life updates, and a yearly thank you with our family photo on my birthdays for saving my life. 😊
He told me to come to the hospital immediately – they were working me into his schedule. Things were now moving very quickly.
I made the mistake of reading the radiology report on the way to the appointment. It basically said that the tumor was wrapped around my heart and all of the major arteries and veins that go with it.
We arrived at St. Joseph’s 30 minutes later. I remember having Andrew with us at the appointment. I also remember my oncologist saying he thought I had Hodgkin’s versus non-Hodgkin’s lymphoma because I looked so healthy.
He scheduled more scans and tests; we got a plan to start chemo based on the scans and test results. I had to do a bone marrow biopsy and get a port placed all pretty much immediately.
I remember trying to find the oncology office and being in complete disbelief that I was going to be a patient at the Winship Cancer Center. Reading words like ‘oncology’ and ‘cancer center’ as we found our way to his office was so surreal.
I remember the trauma of walking into the appointment. I was literally meeting with this man (who I now and forever love dearly) to find out if I was going to get to live or if I was going to die.
To this day I can’t go back to St. Joseph’s without having a panic attack. I do all of my follow-up appointments at a different location.
I had one more office visit with my oncologist before I started chemo.
We found out that the cancer had spread, it was on my liver, spleen, and I think a breast and kidney.
I met with a surgeon, and it was also inoperable. It was stage IV and “rare and agressive.”
It was non-Hodgkin’s – there are 32 subtypes of that, so they still were trying to figure out which type I had to further target the treatment.
Despite how bad this all sounds, we were also told it was “curable and treatable” several times.
I never once thought I would die; I never once thought about dying.
We found out that I’d be treated with chemo, and no radiation or surgery would be needed if things went as planned.
I found out my hair would fall out after the first round, and I was told I’d be throwing up and having diarrhea for the next six months.
I would be undergoing the R-EPOCH protocol. My chemo would be infused 24 hours a day for five consecutive days, and I’d have to be hospitalized for it. There would be six rounds of chemotherapy. I’d be in the hospital for five days and then go home for two weeks, and we’d repeat this six times.
Sidenote: from what I understand, this isn’t the norm when it comes to chemotherapy. I think what’s more common is going to an infusion center for a few hours for a few days a week. During my treatment, I would occasionally visit one for fluids between rounds of chemo.
Infusion centers are large rooms with recliners full of people getting chemotherapy. Most of them carry on with normal activities while hooked up – like watching tv, snacking, or using a laptop. This was pre-COVID, so people would have a support person, too. Some people even come in after work; everyone looks pretty normal and healthy. It’s nothing like I would have imagined it to be had I not been to one. Infusion centers do not look like a room full of sick people fighting for their lives. I found it both reassuring and mind-boggling.
I cried the entire way home and throughout the office visit.
A few days later, I realized I had forgotten to ask how the drugs would affect my fertility. So, I called my oncologist one day as I ran errands in preparation for our lives to turn upside down. He said, “Normally, I’d recommend freezing your eggs. However, that workup takes a couple of months, and you don’t have a couple of months.”
Devastating and terrifying.
Also, I probably wouldn’t be here if I hadn’t gotten the appointment that I did at Vine Medical – the next available physical with Melisssa would have been too late for me.
I started chemotherapy on March 19th of 2018.
The R-EPOCH Protocol
R-EPOCH is a dose-adjusted chemotherapy protocol which means they give you the highest dose your body can handle without killing you. Yes, it’s barbaric, and I’d imagine pushing that hard could be unnecessary, but I wasn’t in a position to gamble.
Also, if you’re young and otherwise healthy with a good chance of survival, they push the protocols harder than if you’re old, frail, and have a fatal cancer. So my protocol was brutal.
I was actually hospitalized eight times over six months. Six times (as planned) for chemo and twice for chemo side effects (fever, low counts, needing several plasma and blood transfusions).
R-EPOCH is an acronym for the drugs used:
- R – Rituximab
- E – Etoposide phosphate
- P – Prednisone
- O – Vincristine sulfate (Oncovin)
- C – Cyclophosphamide
- H – Doxorubicin hydrochloride (Hydroxydaunorubicin)
I’m glad I didn’t know this before, but I think a lot of people have really bad reactions to the Rituximab because they give you Benadryl before running that one, and a nurse is required to sit with you for the first 15 minutes of administration…but just for that one, not for all of them. The Etoposide, Vincristine, and Doxorubicin are run for most of the 5 days. Cyclophosphamide is the final drug each round – it’s given only for like 20 minutes or so. That one always caused a burning sensation in my nose.
Also, when the nurses come into your room to hang a new bag of drugs, they dress in basically a hazmat suit. I guess it’s to keep the drugs from possibly touching their skin. I think if the drugs touched their skin they might get burned or be subjected to some of the side effects.
It was all very intense.
During treatment, I did my best to stay off of Google. I purposely avoided reading about treatment and drug side effects because I didn’t want anything negative swarming around in my head. I was just focused on moving through the next several months.
Tips for Surviving Chemotherapy
One of the best tips I got was to “take all of the drugs all the time.” NOT something I would usually do, but it probably saved me.
During chemo, they give you a lot of medications to mask the side effects of the chemotherapy drugs.
- You absolutely have to stay ahead of side effects (especially nausea) – take all the pills and do all the things before it has a chance to set in. If you’re behind it – you’re too late, and you might not be able to catch up.
- I took Zofran and drank ginger tea BEFORE I started to feel sick. Both of those really helped. I only threw up once on chemo (date night – apparently, chemo and alcohol don’t mix), and I only had diarrhea once (from food poisoning, I think).
- I took the antibiotics minimally between rounds (this was okay per my oncology team) and took probiotics the entire time.
- I opted out of the Prevacid – which isn’t part of R-EPOCH, but is routinely included to “prevent heartburn, just in case you got it during chemo.” I took my chances and never got heartburn.
Below is a list of supplements I took during my treatment. They were recommended by my doctor and approved by my oncology team.
I think these really helped because I actually completed this protocol on schedule. Most people who go through the R-EPOCH protocol get delayed due to complications.
Everyone’s situation is different, so always check with your doctor before adding anything to your regimen.
- Thorne Basic Nutrients 2/day
- Alpha-Lipoic Acid
- Melatonin 20mg (a very, very high dose) – the research on melatonin and cancer is mind-blowing! I did stay on it too long after chemo was done, and it caused my heart rate to be too high. That resolved as soon as I discontinued it.
- Extra Vitamin C
- Extra Vitamin E as mixed tocopherols
- High-quality Fish Oil
- Enzymes between meals
- Quercetin with digestive enzymes
- I also did a mushroom blend supplement with Maitaki and Reishi (those were the two most important) and a few others.
- Chewable Deglycyrrhizinated Licorice between meals (this really helped with my mouth sores)
- Whey protein isolate
- Green tea extract + drinking organic green tea
Tips for Managing Pills
Managing the pills above plus medications during cancer treatment is a full-time job.
Here are some ways to simplify your pill schedule:
- Invest in a few pill organizers to divide things up; try taking pills three times a day (breakfast, lunch, and dinner) so you’re not downing a bajillion pills at once 🤢 . Also, pill organizers allow for quick and easy access.
- Use timers on your phone and checklists to stay organized and avoid overwhelm.
- I also had a bag that I toted all of my pill bottles around in. That way, if I was lucky enough not to be in the hospital or at home, I had an easy way to take everything with me.
Complications and Side Effects
I’m really proud to say now that my body is close to being 100%! I’ve got a few quirks I’m trying to work out, but I’m so happy with my progress and so amazed with the human body.
Here are the complications I experienced during chemo and tips for dealing with some of them.
If you’re unsure what a port is, you can learn more about that here. It’s a way to deliver drugs straight to your heart versus into a vein (chemo drugs will burn your veins) for delivery throughout your body.
I was so uncomfortable after my first round of chemo – I felt like something in my port was pinching a nerve in my chest, and the pain radiated into my back. I had to sleep in a chair because I couldn’t lie down it was so painful. It was a low grade, but very constant pain – so annoying.
I had testing done to look at my port and found blood clots forming around my port (so around my heart). They gave me Xarelto and assured me that blood clots travel down, not up, so I didn’t need to worry about having a stroke. OMG. PHEW – I didn’t even know I needed to think about that! The pain subsided after a few days.
In the meantime, they gave me tramadol to help ease my angst. Like literally just GAVE IT TO ME. An opioid – just wrote a prescription – literally, “You’re having pain? Try this!” I don’t even think they recommended Advil or Tylenol first.
My husband was immediately giving me the side eye and was uneasy about it. I took it right away because I was so tired of being uncomfortable.
It was way too much for me (I don’t handle things like that well), and I ended up just doing a half dose as needed. I’m so thankful I don’t have an addictive personality, though – and I feel for people with opioid addiction; it feels weird to say this – but I kind of get it! Tramadol took away my pain (and all of the stress of everything going on), but it also gave me this really euphoric feeling, and I could still function 100%.
So then, during my second round of chemo, more tests were ordered to look at my port again because I was still complaining. It turns out it was LEAKING because the cap wasn’t shut all the way. Whoops. So either the chemo drugs were entering my body before they were supposed to through the port and causing the pain I had felt… or maybe the cap being opened was pinching me. Who knows, but they tightened the cap and the pain stopped.
These could have killed me.
I couldn’t eat for days at a time because my mouth was full of ulcers. I would be so hungry I would lay in bed and cry – I literally couldn’t eat. I was so miserable. My mom (thank God) made me this really amazing tea and a watermelon ice recipe from The Cancer-Fighting Kitchen cookbook that helped me pull through. She also made some really good plant-based soups that I could drink!
I probably wouldn’t have made it if I had also been throwing up or having diarrhea with this. By the end of chemo, I was 97 pounds; I’m just under 5’7″.
If you have mouth sores or know someone suffering from them, swishing glutamine can help, and a prescription for Nystatin can also be helpful to prevent infections.
This means your white blood cell counts have gotten too low, and your body isn’t able to defend itself against germs very well.
This is really nerve-wracking when you have a kid in daycare and are going through chemo! Also, I really feel for people going through chemo during COVID! When you’re hospitalized for these low counts, they put a special sign on your door to limit guests and they even take dietary precautions since you’re also more susceptible to food-borne illnesses during this time, too.
For me, this led to ER visits and extra hospitalizations (to be expected), requiring several blood transfusions and some plasma transfusions.
My hemoglobin was monitored daily while I was hospitalized during treatment. When it would start to look like it was getting low, I was able to bring it back up with whey protein shakes.
At some point, the chemo made it too hard to keep up naturally. I ended up in the ER a couple of times between rounds of chemo, and I needed several blood transfusions.
Low hemoglobin is really bad for your heart.
I remember being so weak and tired from chemo that I didn’t even have enough energy to stand while brushing my teeth. I also remember putting Andrew in bed one night, and just walking across the room to lay him in his crib left me out of breath.
I had no idea these were signs of my hemoglobin being low, and I feel like I should have had some counseling. Just an overview of emergency symptoms would have been nice.
Here are the most common signs of low hemoglobin:
- Extreme fatigue
- Muscle weakness
- Pale skin
- Shortness and breath
- Fast or irregular heartbeat
People always ask if I lost my hair. When I tell them I did, they say, “Wait, do you mean like ALL of it!?” I find this so funny.
YES, I lost ALL of my hair. Even my nose hair! I did not even realize this was important, but nose hair keeps your nose from running constantly.
Without my nose hair, my nose constantly dripped fluid (gross but true). I had tissues with me all the time – it wasn’t snotty (I doubt my body had the resources to make that), but it was like literal water was constantly coming out of my nose. Like a drippy faucet. All the time!
I kept all of my hair until after my first round of chemo.
I got a pixie cut before my second round to make the process of my hair falling out less traumatic.
How long does it take your hair to come back after chemotherapy?
Losing my hair and wondering when it would all be back gave me the most angst.
So, if you’re going through this – I finished chemo the week of July 4th of 2018.
- I had a short pixie cut by October of 2018 (4 months later).
- I made my first ponytail in April 2020 (one year, nine months later). Hope that helps!
It was a long process. I got my nose pierced to play up the edginess of the short hair, and I also decided to get my eyebrows Microbladed. I never had great brows, but after chemo, they were just totally unacceptable.
Both helped me feel so much better about myself!
If you’re in the Atlanta area, Brows by Milly is the place to go for this! They even do a special thing for cancer patients each year! Definitely check them out.
At first, my hair came back blonde at the tips, and now it seems darker than before chemo. I think it was lighter before from the sun – my natural highlights are slowly returning.
Also, my curls might be slightly tighter than they used to be.
I definitely have less hair now than I used to – the lady who cuts my hair said it best “You used to have enough hair for three people, now you have enough hair for two people.”
Also – this was weird, but I had forgotten that hair grows in cycles. It eventually catches up and gets more normal, but it did seem to come in patchy and thinner at first. I experienced this the most with my eyelashes and underarms.
Buying a Wig
WIGS! Ugh, they are incredibly hot and uncomfortable, in my opinion. And super expensive! Insurance covered mine completely, but if they didn’t, it would have been $3,600.00!
Mine was the kind made out of real hair that people donate to cancer patients. It was custom-made just for me.
From what I remember, it takes several hair donations to make a single wig. All of the hair donated is processed into the same type of hair so that it can all be used together to make wigs for people who need them.
The process of picking it out was actually pretty fun. If you’re in the Atlanta area, Northside in perimeter has a wig shop inside of the hospital gift shop. It feels just like a hair salon, and they help you customize whatever type of wig you want. If you wear your wig correctly, nobody knows! It gives you normalcy when you need it.
Most of the time, I just wore a headcover. I ditched my wig completely a month or two after completing chemo and just walked around with what looked like a very closely shaved head for a couple of months. I just couldn’t take it anymore! 😬
Just as I thought I was on my way back to normal…my fingernails and toenails fell off!
This happened three weeks AFTER my last round of chemo! It was so awful. It caught me totally off guard.
I’m posting a picture so you know what to look for if you’re going through this. I didn’t even know this was a thing.
It took a few months for them to fall off all the way (they fall off as they are being pushed by the new incoming nail) and then a few more months to grow back again.
Numbness + Dexterity Issues
I had some numbness in my fingertips, and really fine motor skills (like tying shoes) felt difficult for a while.
Fatigue + Energy Levels
It took about two months to feel like I could take Andrew to church and the grocery store without extra help.
I remember trying to go to Target once during chemo, and I ended up needing to sit in Starbucks while my mom shopped. I just didn’t have the energy to walk around the store.
Going through something like this makes you thankful for things you never thought about giving thanks for.
I mentioned this before. It’s due to the toxicity of the drugs. So, the most notable side effect was my brain feeling like a slushy for six months during treatment.
Afterward, I would get sounds mixed up when I was talking. For example, instead of saying “granite countertops” I’d say “cranite gountertops” and that would happen constantly. It lasted for about a year.
This is kind of minor, but this is just so funny and weird too. Ever since chemo, I can not for the life of me remember what side of an envelope the stamp goes on and what side the return address goes on! I never had a problem with this before. I got it wrong TODAY!! I was so sure I had it right today that it was pretty funny when I had to carefully remove my stickers. If I’m mailing something, I have to google the placements or find another piece of mail to get it right.
Sense of Smell
My sense of smell has really been compromised. I really can’t smell very well to this day.
We had COVID back in January, and my sense of smell is even worse now. I’m still working on that – I could smell everything during my first trimester of pregnancy, so I know my nose can work. I just need to figure out exactly what’s missing.
It sounds hormonal, but I don’t seem to have any other hormonal issues. So still working on that one…
I was so blessed to get pregnant again.
There is nothing that could be worse for me than the threat of not being able to have more kids after having Andrew. It was definitely a question, though, and never looked promising.
Rebecca was a complete surprise.
As a woman, the thought of losing eggs to chemotherapy (like literally laying in a hospital bed while you’re being poisoned and your eggs are dying so you can live) is… too hard to put into words. It feels like I was in a horror movie.
The Cost of Cancer Treatment
We carry health insurance and have always been advised to carry a low deductible plan (just in case). I’m really glad we listened.
I can’t even imagine what someone would do in this situation without insurance – our medical bills would have easily been over $200,000.00.
While our medical expenses were kept to a minimum, we did have increased costs for foods and supplements.
Where a lot of money did end up getting spent was by our parents. Both my parents and Blake’s parents split an apartment for about seven months and took turns flying in from Virginia each week to help us out while I was in the hospital. So flights, food, apartment rent, and bills.
We are so fortunate they could do that because our schedules were insane.
Blake would drop Andrew off at daycare as early as possible and drive to the hospital every morning to stay with me as long as he could (usually 8:00 am – 3:00 pm). He would return to pick Andrew up from daycare, do dinner, bath, bed, etc., and repeat the next day.
So, our parents would be with me in the hospital when Blake wasn’t there (usually 3:00 pm – 8:00 pm). They spent afternoons and the night in my room with me. I actually had a large room with a guest suite for most of my stays.
Our parents would also go to our house when Blake was with me to prep dinner, make bottles, wash our clothes, etc. All of the things that needed to happen so Blake could function.
Our jobs were also affected.
My team reverted into my ‘maternity leave mode’ at work for several months. Blake luckily worked from my hospital room most of the time and at night after Andrew went to bed.
We had a lot of time off for doctor’s appointments, too. Managing cancer treatment quickly became a full-time job.
Tips for a Hospital Stay
- Bring your own clothes and do NOT wear the hospital gown. I wore yoga clothes throughout treatment, and the staff was totally fine with it as long as they could access my port. I did have to wear the gowns when I had procedures done.
I didn’t even realize it was kind of funny not to wear a hospital gown until after I went through all of this. But I think it helped me stay out of the “I’m so sick” headspace. I felt comfortable and at least liked what I was wearing. Anything to keep morale up!
- Bring whatever makes you happy. If you’ve ever traveled with me, it’s no surprise that I always had so much luggage for my hospital stays. It would take two luggage carts to bring all of my stuff up to my room. 😂 😂
I had work stuff; I always insisted I would scrapbook (no way, never happened), so I brought that stuff; I had coloring books, a diffuser (constantly running sage), my clothes, and a ton of food and water.
I hardly ever used what I brought, but packing like I was going on a trip and looking forward to doing the things I had planned gave me something to look forward to – even if I couldn’t do them.
Scrapbooking would have taken too much brain power, but coloring was doable. I may have checked email on my phone and definitely wrote paychecks from my hospital bed a few times. But not much work was happening besides that. The sage was nice – I got a lot of compliments on how good my room smelled. 🧘♀️
- Try to keep a routine even if you’re stuck in a bed. I got out of bed every morning, brushed my teeth, and washed my face. I also drank a venti iced coffee from Starbucks every morning to have something that felt good to start my day with.
Something that was really traumatizing to me (and probably could have been easily fixed looking back on it) was that I had to drag a pole with me everywhere I went because it had my chemo drugs hanging from it. I mean, this pole and I went everywhere together.
I was always attached to it – when I was lying in bed, if I needed to go to the bathroom, if I walked the halls. It was such an obnoxious thing to have to deal with. I think the drugs could have easily been put in a fanny pack (more on how I know that later).
- Do not eat the hospital food! It’s not even food. Like really, don’t eat it – ever. Food budgets need to be increased so that hospitals can provide patients with food that support the healing process.
Hospitals serve foods that are overly processed, have no nutritional value, and are full of harmful ingredients. These foods are contributing to inflammation and, therefore many diseases. This is mind-boggling. 🤯
Okay, so (haha) I did actually try the food the first day to get the “full experience” of being in a hospital, and who doesn’t like room service?
I got a baked potato and chef’s salad, feeling like that would be a safe bet for some real food. It wasn’t. The baked potato was so strange, I’m not even sure it was a real potato – the texture was just not right and it smelled weird. They gave me “butter” but it was actually margarine – it had canola oil in it and so did the salad dressing along with high fructose corn syrup! UGGHHH why!?
Not to mention (and I didn’t expect this) but none of it was organic, so many GMOs, and the salad was topped with processed meat of which I’m sure was full of hormones and antibiotics.
So, if you’re lucky enough to have people who will cook for you or bring you food – definitely take them up on it! Food is so important to the healing process – you can’t heal on inflammatory foods with ZERO nutritional value.
Food can heal you, or it can hurt you. When going through something like this, you need all the healing power you can harness.
How do Healthy People get Cancer?
Typing these words four years and seven months post-diagnosis – this still seems surreal to me.
I’ve dedicated my life to helping others get to the root cause of their health issues, and one thing I’ve learned from this is that diseases (especially cancer) are multifactorial.
This experience backed me out of narrowly looking at all of life through my nutritional lens.
- My cancer was estimated to have started in April of 2017 (when I was pregnant with Andrew). Pregnancy suppresses the immune system and makes the body more willing to accept things – so being pregnant of course, didn’t cause the cancer, but the state could have made it more likely for me to get it.
And yes, if you’re wondering how I made it through pregnancy without the cancer being found – it was present on blood work done by my OB-GYN, and he missed it – twice.
It’s the one time in my life I haven’t scrutinized my bloodwork. I knew some labs would be different because I was pregnant and I purposely didn’t look at them because I didn’t want to go down some paranoid rabbit hole obsessing over lab work! The irony!!
And it’s honestly a blessing. I am so thankful that I got to enjoy my pregnancy and time with Andrew in an ignorant bliss. It was caught in time and I am fine now. I am so thankful I didn’t know about this when I was pregnant and wasn’t immediately separated from him to begin treatment.
- There’s also the possibility of an environmental component…Another crazy piece to this story is that one of our neighbors that I was pretty good friends with (I knew her because we were always both outside exercising) had almost the exact same cancer at the exact same time as me! Probably not a coincidence.
Before, I mentioned that there are 32 subtypes of non-Hodgkin’s lymphoma. The subtype I had used to be classified as her subtype (so they used to be seen as the same cancer)! They are super similar cancers, but for whatever reason, my subtype branched off from hers and became its own subtype. We also underwent the same protocol.
Her cancer presented in her arm and was pressing on her brachial artery – her arm turned blue at work, so she went to the ER and found out she had a tumor.
She got to do her chemo at home and wore a fanny pack. I think she went into an infusion center when her drugs needed to be changed.
I’m glad I was in the hospital – I’m not sure I would have felt safe at home on all of the crazy drugs. I’m glad I had the monitoring and access to anything else I may have needed.
The woman that lived across the street from my friend also had cancer (but a different medical history and a very different type of cancer). Sadly, she passed away a couple of years after our treatment and diagnoses.
So that’s three people in the neighborhood that I KNEW. Who knows how many other people may have also had cancer that I didn’t know. Or maybe not, maybe it was just a coincidence.
However, my oncologist and my physician both mentioned knowing of other cases in the area I lived in occurring in women my age. I brought this up at one of my hospital stays and was told “it sounds like a cluster and should be investigated by the CDC.”
An environmental component would be hard to prove. I did look into trying to figure out who to talk to at CDC about it but I wasn’t able to get very far.
- There could have been an emotional component – was I not listening to my heart? Was my body trying to quiet it down?
I’ve struggled with this as a contributing factor because I’ve always taken really good care of myself and treated my body really well. I do have a fascination with seeing how much I can accomplish and that can cause me to lead with my head and not listen to my body/heart/intuition as much.
We have so much lymphoma and leukemia in our family history. I have a grandfather, a cousin and an aunt who had leukemia. I also have another aunt who had lymphoma. My aunt with leukemia was diagnosed and went through treatment as I was going through treatment. She unfortunately didn’t make it.
Helpful things you can do when someone you love has cancer
I think anytime someone is going through a major event, the most helpful things you can do are the simple things. Laundry, meals, cleaning, help with kids – whatever they need to keep life running smoothly.
I, unfortunately, have traveled the cancer road before with a friend whose daughter was diagnosed with brain cancer, sadly she didn’t survive. A couple of things I’ve learned from her story and mine are:
- When terrible things happen to people, you might assume other people are showing up. This might be true, it might not. Make sure you show up for the people you care about, no matter how busy you are.
I will never ever forget the people that showed up for me. I can also remember who wasn’t there – it’s a true test of friendship. Showing up can of course, be in person, or it can also be as simple as a text or a nice card to let someone know you’re thinking about them.
When my friend’s daughter was going through cancer treatment, I always assumed there was a group of people doing things for them when I wasn’t. I didn’t have anyone specific in mind, but I just assumed others were around helping. Sometimes others were helping out, but sometimes they weren’t. It takes a village to get through something like this, so don’t assume needs are being met.
- Most people going through cancer are learning as they go. So, if you know someone going through treatment and are curious about their treatment plan or prognosis, just know that there are no dumb questions.
I think one of the first things everyone thinks about when they hear the word cancer is death. Some cancers are fatal, and cancer treatments can be totally barbaric (and yes, I’m also thankful for the treatment I went through). Many people die not of cancer but as a result of the treatments. So, no matter what the prognosis – going through cancer and treatment is really scary. Just because the expectation for someone is to survive their diagnosis, it’s never a guarantee.
But also, not everyone going through cancer treatment is afraid they will die; I didn’t let that option enter my mind. When I was going through treatment, I wanted to talk about what was happening to me. I felt like people were afraid to ask, but I did enjoy questions about my treatment and diagnosis. I really just wanted and needed to talk about what was going on. Whenever people visited, I always made it clear that my cancer was “curable and treatable.” I didn’t want people visiting wondering if they’d ever see me.
Gift ideas for cancer patients
- A nice blanket – I love a good blanket, and it’s really nice to have one to bring to the hospital so you aren’t stuck with just hospital sheets.
A blanket would also be nice to bring to an infusion center, especially if cold capping!
One blanket I got was super special – it’s a healing blanket covered in healing messages and feels like it’s infused with blessings and healing intentions.
We keep it with our “sick kit” in the closet and pull it out when the kids don’t feel well.
In addition to a blanket, I also brought my pillow from home and my pregnancy pillow (a body pillow would also work and be a great gift) to make the bed comfier.
- Jewelry with encouraging messages –I got a bracelet that had been blessed and has healing stones on it that I still love wearing. I was also given a necklace that says “faith over fear” these both made me feel stronger.
- Special deliveries at the hospital – it could be food, balloons from the gift shop, or really anything thoughtful and unexpected. Little surprises can mean a lot to someone going through something like this.
A super sweet friend had cookies delivered before I arrived for my first round of treatment. It was so nice to arrive and feel loved right away.
- A new journal – Sometimes, you just need to get your feelings out, and a lot comes up during cancer treatment. Writing was super helpful for me. A new notebook and some pens could go a long way to helping someone heal and process what they are going through.
- Instead of Flowers (this company is Atlanta-based) – it’s a really nice meal delivery service where you heat and eat a multi-course meal. They also have gluten-free options! The food is so so good!
I didn’t know about this and am not sure anything would have changed, but I did learn cancer patients aren’t supposed to get flowers. If counts are low, patients are more susceptible to fungal infections that flowers can carry (1).
Our Broken Healthcare System
I could have told you our healthcare system was broken before – but now I can assure you – it’s SO broken!
True healing isn’t supported. One thing that was so eye-opening to me was that I always felt worse leaving the hospital than I did when I got there. I expected that the hospital would make me feel better because it was “helping me heal and getting rid of my disease.”
Also, what’s interesting is that I was fully functioning with cancer. So why does the cure have to be worse to endure than the disease?
I didn’t find this out until after treatment….but apparently, I was in remission by the 3rd round of chemo – I had no idea this was the case. Otherwise, I probably would have opted into other treatment modalities and diligently monitored for any potential return.
I wasn’t given the information or the choice. It wasn’t until after the 4th and 6th rounds that the side effects required hospitalization. So I think I would have recovered from all of this much quicker had I been able to stop and try other therapies.
Also….I have to imagine there’s a financial incentive to all this – regular chemo 5-day stays at the hospital were $30,000.00 each. The two in-between rounds of hospitalizations because of the chemo were billed for around $10,000.00 each.
And this was the only way to save my life? Since when is there only one way to do something?
What about the body’s innate ability to heal itself?
I’m not trying to sound ungrateful at ALL. Of course, I’m thankful for chemotherapy – it saved my life. At the same time, I never want to be so blinded by that fact that I’m not thinking critically and asking questions.
Life after cancer
Good things that came out of my diagnosis
Once you’ve been through something like this, you’re given a new perspective on everything – it might sound cliche, but you see the world through different eyes.
I’m much more empathetic because I’ve experienced real pain and suffering. I rarely complain about anything anymore – I recognize small things and can easily let them go. I am always so so thankful for each birthday.
I get to be Andrew’s momma, and Rebecca is also here due to my lifesaving treatment.
Everything with them is so much sweeter because I have the privilege of being here.
I see God totally differently now! This has been really cool. Because we can’t see Him, I used to equate Him with being invisible, but now I realize He works through other people. I always knew we were His “hands and feet,” but seeing this in action totally changed me.
These two verses have really come to life for me as well –
Isaiah 45:3 “I will give you hidden treasures, riches stored in secret places so that you may know that I am the Lord, the God of Israel, who summons you by name.”
God provided for us every step of the way when we were going through this. He showed up every day for me. Sometimes it would be through a friend or family, sometimes a nurse or other member of my healthcare team, and sometimes through circumstances. There were things I saw and experienced that I know were intentionally put in place so that I knew He was there.
Psalm 139 “Even though I walk through the darkest valley, I will fear no evil, for you are with me. Your rod and your staff they comfort me.”
Before I went through this, I glossed over this as something that got read at funerals. I never really paid attention to it. But we had a sermon at church as I was starting to recover from all of this, and I now understand that this is saying that even though sometimes things are really scary, God is there with his power and love providing comfort as He directs and steers your life.
I’ve dabbled in energy healing and experienced work around trauma release and can now help clients identify when that type of work may be helpful. It’s probably always helpful, but I recognize it as a need now.
I feel such a strong sense of community in Atlanta. This was something I really struggled with before.
Our friends in Atlanta are really spread out, and none of them really know each other, so it’s not like we have a “group of friends” here even though we have a lot of friends. So many people showed up for us and were there for us when we needed it most. I will never forget that.
Lastly, this enabled me to see the enormity of our family’s love for each other. It’s not that I doubted that my family loved me, but seeing everyone come together and put life on hold for me for six months is something I will never forget.
Nutrition tips for cancer patients
This really isn’t my area of expertise – even though I’m a dietitian who went through cancer treatment, n=1 for me!
I’m thinking about getting an oncology certification, but only because I’m interested in the nuances of diet and cancer treatment. For me, being able to eat during chemo was for survival. I was never a candidate for keto or anything specialized or restrictive.
I ate a really clean, organic, mostly non-GMO gluten-free diet during treatment (but I also did that before). Lots of kombucha, green juice, and lower carb are really my norm, so I don’t feel like I made a ton of changes during chemo.
But…this may be why I got through the chemo schedule on time (which, as I said before, rarely ever happens), and it could be why I am really close to being 100% recovered.
The Cancer Fighting Kitchen Cookbook is always a go-to for me. If you’ve had cancer, you could use the recipes for preventative maintenance. If you’re going through cancer treatment, it has recipes to help you cope with the different side effects. It’s so helpful! I always buy it as a gift when someone I know gets diagnosed with cancer.
I’m personally reading How to Starve Cancer right now, and it’s fascinating, so that would be another recommendation I would make.
- Vine Medical Associates
- The Cancer-Fighting Kitchen Cookbook
- A WOMAN’S PLACE AT NORTHSIDE HOSPITAL (WIG SHOP)
- INSTEAD OF FLOWERS (MEAL DELIVERY)
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