THE COVID VACCINE: FROM A CANCER PATIENT’S PERSPECTIVE
COVID, COVID, COVID AND MORE COVID “TALK”
The Vaccine and Having a “Co-Morbidity”
At this point, I know we are all pretty burned-out by COVID. You can’t turn on the TV, watch commercials, read a newspaper or magazine, walk down the street, enter a building, and so on without thinking about the virus. I do not know how our #healthcareheroes do it!
Right now, we’re all focused on the various COVID-19 vaccines finally available to the public.
At this stage in New York State, if you have a certain condition or “co-morbidity” you can receive the vaccine. I ticked off quite a few of those qualifying conditions. Of course, the major one is cancer and being in-treatment.
As an Aside: I really wish they’d use another term besides “co-morbidity“! I know that I can die from my underlying condition. Yet, I don’t need the constant reminder that on top of that, COVID can kill me as well. I’m thankful to have access to the vaccine, but it’s only because my condition may cut my life short.
The medical field definitely needs to work on their terminology, speaking from a patient’s perspective. That’s a discussion for another day.
My Primary “co-morbidity” – 3 Bouts of Brain Cancer In Less Than 7 Years and Currently In-treatment
If you read my Posts regularly, you’ll likely know all of the following info.
Brain cancer turned my life upside down nearly 7 years ago. All brain cancer is rare. However, my type is particularly rare. It is a Grade III anaplastic ependymoma that metastasized outside of my brain.
Ependymomas account for about 2% of all brain tumors in adults.
See: https://www.cern-foundation.org/education/ependymoma-basics/ependymoma-overview
My cancer is not just rare. It is also very aggressive.
Yes. I knew my cancer would likely creep back into my poor lil brain at some point in my life. My doctors were very kind in addressing that fact. They were patient and compassionate. Plus, they knew talking about a recurrence was bound to scare the hell out of me.
The Initial Tumor & Recurrence
My neurosurgeon completely removed my 1st tumor. Then, I had 6 full weeks of radiation.
Nevertheless, the tumor recurred in less than a year! So, my neurosurgeon went to work again, and completely removed the 2nd tumor. Several weeks later came the megadoses of stereotactic radiation.
When my tumor recurred I was in utter shock. My former boss actually walked me from our office to the ferry I took home, as I cried uncontrollably. He offered to get me a car service, but I needed the fastest means of transport! I was not about to sit in an hour of traffic through Manhattan.
WTF? ANOTHER RECURRENCE
I was close to 5-years “cancer-free” and even planning a celebration brunch. Needless to say, my family, friends and I were all floored when my tumor once again returned in 2020 (the year from hell). Plus, this time it metastasized.
Both a needle biopsy and PET Scan confirmed there is no cancer in my actual brain. Yet, somehow those sneaky cells broke through the blood-brain barrier. Thus, my “brain cancer” infested lymph nodes in my neck, and my parotid gland (a major salivary gland that your facial nerves wrap around)!
I used to be like a nice NY strip from Smith & Wollensky® served “rare“. Well, now I’m steak tartare only found in one hidden bistro somewhere in Paris! I am raw and as rare as they come.
Unfortunately, I’m Also Now a Stage IV Patient
Despite it all, I’m still fortunate. After meeting with, and speaking to THE top doctors here in the U.S., I’m currently in-treatment. I take two oral chemotherapy drugs. Overall, both drugs are relatively well-tolerated.
I experience some side-effects. My chemo regime suppresses my immune system. However, my experience is nothing compared to what I’ve seen and heard other patients go through.
So, I certainly qualified under NY State’s regulations defining an individual with a “co-morbidity” entitled to the vaccine.
Some Past Posts on my Recurrences:
There are many Posts on this Blog about my various recurrences. In fact, the majority of Posts at least touch on the subject. However, here are a few:
https://braincancerbabe.com/2020/09/20/5146/
https://braincancerbabe.com/2020/11/17/some-good-news-for-a-change/
Needle After Needle AFTER NEEDLE
Cancer Patients Face Needle After Needle After Needle
I’ve been poked and prodded for the last 7 years with all kinds of needles, especially since I have such an extremely rare cancer. Some examples include but are not limited to:
- Countless blood draws at numerous hospitals (They’ve taken so much blood from one vein it’s permanently black and blue);
- IVs for the contrast they use during all of my MRIs and CT scans;
- ALL the IVs when admitted into the hospital.
I am by no means alone in this experience.
I’d say, all cancer patients face needle after needle after needle for years!
The Outpatient and Urgent Care Experience With Needles
Outpatient Appointments
Every time I have to see my numerous oncologists (I currently treat at 3 separate hospitals), they draw blood.
Additionally, I undergo brain and spinal MRIs intermittently about every 3-4 months. Those MRIs require an IV contrast/dye, which enhances the scan’s image quality.
Most likely, many cancer patients receive outpatient chemotherapy and/or immunotherapy IV infusions.
Personally, I had several infusions of a drug, Avastin. Unlike chemotherapy, Avastin attacks cancer cells to block the blood supply that feeds the tumor and can stop the tumor from growing. See: https://www.avastin.com/patient/mcrc/about/how-avastin-works.html
Urgent Care
In my opinion, Urgent Care or UCC at my cancer hospital, is one of the worst places in the world. Sadness just seems to hang over every inch of that ward. I avoid it at all costs!
A brain tumor (even a benign one) wreaks pure havoc on a person’s body. Thus, I wind-up in UCC much too often.
For me, the UCC routine is: 1.) taking my vitals, 2.) a neuro assessment,3.) a blood draw and an IV, 4.) followed by hours-upon-hours waiting for a CT or MRI. Sometimes even both! When I arrive at UCC, I just know I’ll be there for a minimum of 7-8 hours, IV and all.
After waiting ALL those hours, and they decide to admit me, I’m prepared to wait even longer for a bed to open-up in the actual hospital.
As a cancer patient, you get to know the routine rather quickly.
Even More Needles – Some of the Worst!
A PICC Line
In 2017, I endured a month-long PICC line (Peripherally Inserted Central Catheter).
A PICC line is “a long, thin, flexible tube used for administering intravenous fluids and medication. It is inserted into a peripheral vein, usually in the upper arm and then advanced through increasingly larger veins until the catheter tip reaches a large vein in the chest above the heart.
See: https://www.intracare.co.nz/Procedures-Treatments/Interventional-Oncology/Peripherally-inserted-central-catheter
When they inserted my PICC line, I had a massive panic attack from the pain! In the middle of the procedure I demanded they stop so I could get more pain meds.
Once the line is in, it’s more of a pain in the ass because it requires so much maintenance. I won’t get into the details here.
Spinal Tap or “Lumbar Puncture”
My doctors liked to refer to my spinal taps as a “lumbar puncture”. Nope. “spinal tap” is definitely more appropriate.
I had to undergo two spinal taps, which involved my worst experience with a needle. Never mind the pain during the actual procedure, after the first I was laid-up in bed for a week with back pain.
Then, after the second I suffered an atrocious migraine for days. The needle caused my spinal fluid to leak out. That leak changes the pressure around the brain and spinal cord causing migraines, dizziness and other symptoms.
So, to relieve the pressure an anesthesiologist must use another needle to create a patch with your own blood to seal the leak known as a “blood patch”. However, you only receive local anesthesia for either procedure.
I had to be admitted to await the blood patch. Thus, I needed a painful needle procedure only to resolve the side effects of another extremely painful needle procedure!
Admitted Into the Hospital – The Longterm Needles
I average about 3 to 4 separate IVs at one time when I am admitted into the hospital, especially for surgery.
Do ya know what it’s like to have 3 to 4 separate IV needles piercing multiple veins 24/7 for weeks?
HERE’s A HINT… IT SURE AS HELL AIN’T FUN
Plus, every few days you have to change out the IV needle. So, they’ve gotta poke a brand new vein! Then usually around 5:00 a.m. the vampires enter your room, and find another vein to pierce for scheduled blood draws.
You’ve got a New BFF, And It’s A Pole
In the hospital adding to those needles constantly piercing your veins, you’re connected to an IV pole 24/7. Thus, you and your IV pole are now forced to be BBFs. It even accompanies you to the restroom!
Lovenox Shots
If you know what a Lovenox Shot is “RESPECT“.
Officially, Lovenox reduces the risk of developing blood clots, in patients that have undergone surgery, or patients with severely restricted mobility.
Every night in the hospital, my nurse administers a Lovenox shot. It’s usually in the same place they administer the COVID vaccine – right into the bicep muscle. It feels like a wasp sting… each and every day I remain in the hospital .
SO, I’VE CLEARLY ENDURED MY SHARE OF NEEDLES
Vaccines (In General)
Strangely enough, I grew up watching my Dad operate on, and care for dogs and cats at his veterinary practice. I can only imagine how many times I watched him administer vaccinations to his “clients”.
At one point I even knew what size needle he required for a particular procedure.
So, I never had a fear of needles UNTIL I had to get multiple vaccines to travel to Thailand.
Before Cancer
Before cancer, I barely took medication for anything! If I had a headache – wait it out. Same if a muscle ached – just get some Tiger Balm.
Admittedly, I’ve never had the flu vaccine. I’m not a huge believer in it, unless of course you work in the healthcare industry.
I don’t even really know the difference in a cold vs. the flu vs. allergies when it comes to my body
Please understand, everything I say here, unless I am quoting from someone or something, is simply my opinion. It certainly is not Gospel.
I’m No “Anti-vaxxer”
I’m no anti-vaxxer. An anti-vaxxer is defined as:
people who disagree with the use of vaccines for a variety of reasons. For example, some view vaccines as an infringement on their human rights.
https://www.medicalnewstoday.com
In fact, it’s crazy to me that a certain sect of a group near where I grew up refused to vaccinate their children against the measles resulting in a massive spread of measles in the area.
On the other hand, I personally know a family who saw a severe decline in their baby’s development after receiving vaccines. She’s now on the autism spectrum.
THE HOT TOPIC – THE COVID VACCINE
Honestly, I still feel very hesitant about the COVID Vaccine.
However, I received my first dose of the Moderna vaccine 2 days ago.
My Concerns With the Vaccine, Even Though I Got It
I received the Moderna shot two days ago.
However, I still have my concerns.
When I asked a few doctors about the vaccine’s safety, I was told:
The Clinical Trials met all the required standards
Yet, last year I was also told:
COVID will only be like a bad flu.
As Any Cancer Patient Would, It’s Natural to Question the Vaccines’ Safety
Specifically, as cancer patients we are so attuned to:
- knowing how thoroughly a drug has been researched
- learning about clinical trials
- awaiting new treatments to be approved by. the FDA.
Some Discussions About the Vaccines’ Safety:
For a number of reasons, it’s not possible to make a precise comparison between these vaccines. One vaccine may have a higher point estimate than another, but their confidence intervals may overlap. That effectively makes their results indistinguishable.
Making matters more complicated, the vaccines were tested on different groups of people at different stages in the pandemic. In addition, their efficacy was measured in different ways. Johnson & Johnson’s efficacy was measured 28 days after a single dose, for example, while Moderna’s was measured 14 days after a second dose.https://www.nytimes.com/i
https://www.nytimes.com/interactive/2021/03/03/science/vaccine-efficacy-coronavirus.html?smtyp=cur&smid=tw-nytimes
Importantly, for cancer patients:
Vaccine for Coronavirus: Is it safe? Yes, research to date indicates the vaccines for COVID-19 have a very good safety profile. The U.S. Food and Drug Administration (FDA) has granted emergency use authorization (EUA) for two COVID-19 vaccines. Both have been tested in large clinical trials. Data from the manufactures show that the known and potential harms of becoming infected with the coronavirus disease 2019 (COVID 19) outweigh the potential safety risks of the vaccines.
Even though the coronavirus vaccines were developed more quickly than other vaccines in the past, they have been carefully tested and continue to be monitored. The U.S. vaccine safety system works to make sure that all vaccines are as safe as possible. Safety has been a top priority as federal agencies work with vaccine manufacturers to develop and authorize a COVID-19 vaccine. Here are some key areas of COVID-19 vaccine development, review and authorization:
Careful testing. All vaccines go through clinical trials to test safety and effectiveness. For the COVID-19 vaccine, the Food and Drug Administration (FDA) set up rigorous standards for vaccine developers to meet. This infographic from the National Institutes of Health shows the four phases a vaccine must go through before it is released to the public.
Authorization for emergency use. Vaccines that meet FDA safety and effectiveness standards can be made available in the United States by approval or by emergency use authorization (EUA). An EUA provides temporary authorization of a vaccine or medication under emergency situations, such as the coronavirus pandemic.
Continuous monitoring for problems and side effects. Once a vaccine is authorized for use, monitoring continues, with systems in place to track problems or side effects that were not detected during the clinical trials. For the COVID-19 vaccine, the FDA and the Centers for Disease Control and Prevention (CDC) are expanding their vaccine monitoring. If there are problems with the vaccine, they are most likely to emerge early in the testing process when they can be identified and addressed.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/is-the-covid19-vaccine-safe
