COVID Vaccine, Part I

Advocacy, Medical Updates, Political 4 Minutes

I’ve seen so many people assert quite confidently that the COVID vaccine is perfectly safe and an equal number of people quite confidently say that it is not at all safe. Who is right?

I have no idea.

Were you thinking I’d say something else? I do have a lot of opinions and I’m not usually shy at sharing them, but this is just too big for me to assert my own perspective. What I have done is follow my doctor’s advice and asked for her input every step of the way. What I have done is to weigh the risk/benefits as best I can to make the best decision possible. What I have done is considered the entire circumstances, not just myself, as I look at my choices. What I have done is consider reliable data and not anecdotal hype on both sides of the argument, as so many have done.

One concern that I’ve heard from a lot of people, which I believe is perfectly valid, is that several subsets of people did not participate in and/or were excluded from the trials that culminated in FDA approval of at least two (2) COVID vaccines in the US. Those of us with cancer are in that category, as well as children under the age of 16 and pregnant women. While I do realize the need to focus on different subsets of the population, being in an excluded subset has led to a lot of anxiety and concerns for many, including me.

After discussion with my doctor and others at my cancer center, I got the first dose of the Pfizer COVID vaccine on January 12, 2021 at my cancer center, the Miami Cancer Institute. I’m in Florida and I know that in some states, the priorities are completely different. I’ve been amazed to see the various lists and differences in priorities, all relying on and applying the same data from the CDC. Mind-boggling as many of my friends also living with Metastatic Breast Cancer (MBC) scramble to figure out how to get the vaccine.

One of the things that scared a lot of us was reading the data collected by Our World in Data, which demonstrated a 15% mortality rate of cancer patients within thirty (30) days of contracting COVID and 30% if hospitalized. Here’s screenshots of the study:

Here are some of the considerations that I discussed with my doctor in light of the fact that not only do I have active cancer, but I am also on medication that suppresses portions of my immune system:

  1. For any of us who are on medication that lowers our immune systems, there is the potential for adjusting dosages or timing of medication to ensure that our immune systems are functioning as best they can. For me, I carved out a special off week of Kisquali to hopefully ensure that my immune system is operating as best as possible. The issue, as I understand it, is that if our immune systems are not able to fully receive the messages from the mRNA in the vaccine, then the vaccine won’t be as effective. I am remaining off the medication that reduces my immune system for one week after administration of the vaccine and I will continue on it until a week before the next shot, after which I will remain off of it for one more week. This is all with my doctor’s oversight and confirmation.
  2. For any of us who have had lymph nodes removed as part of breast cancer treatment, I have been told that it is best to avoid the arm on the side where the lymph nodes were removed. Alternatively, the thigh or buttocks can be used for administration. At my cancer center, the room where the vaccine was administered did not have a private place available and so if you need to have your shot administered in a part of your body that is not accessible, you may need make other arrangements.
  3. Since the vaccine needs to be inside or intramuscular, it is important that the person administering the vaccine does not pinch the skin prior to administering the shot.

For me, the actual shot was a breeze — I didn’t even feel it puncture the skin! I remained in the observation area for 15 minutes following administration of the shot and then I went about my day. I’ve had some muscle aches in the arm where the vaccine was administered and bright red hands for a day or so after receiving the vaccine. I hear that the second shot can cause more side effects about 50% of the time (anecdotally). I’ll update everyone once I get that one.

The CDC has established a website for everyone who has gotten the vaccine to report their symptoms after receiving the vaccine. It’s easy to register and then you get a link each day to report your symptoms or lack thereof. The website is: https://vsafe.cdc.gov. I’ve been updating my experiences each day and will continue to do so as long as I am asked to share. The more people who provide their personal experiences, the more data the CDC will have to help guide the country as we move forward.

Finally, here are the videos I recorded and posted on social media educating as many people as possible about my own experiences and urging everyone to consider getting the vaccine!

Here’s how red my hand got the day after the vaccine!
Here’s what my hand looked like 2 days after the vaccine and after one dose of Claritin.

Stay safe, everyone!!!

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

47 thoughts on “COVID Vaccine, Part I”

  1. Very well said, Abigail. It concerns me that different people were excluded from clinical trials. What also bothers me is that, at least in the case of Oxford/AstraZeneca’s jab, is that there’s no data for immunosuppressed individuals, which are precisely those for whom the jab is partly aimed at. In the UK, they’re spacing the dose so that instead of 21 days between jab 1 and 2 there’s 12 weeks, which is something that has made me livid. Those with impaired immune systems won’t have the same immune response and they need that second jab on time, but they won’t get it and there’s no data on what happens then. It’s interesting to see your hand – I’ve got Raynaud’s & erythromelelgia so the palm of my hands, especially the left, are always bright red or purple! I’m curious as to how the vaccine resulted in that happening. Still, if side-effects are minimal that will be a blessing but my concern then would be how effective they actually are. Fingers crossed šŸ¤ž

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  3. Considering the risk of not getting the vaccine is such an important step in making an informed decision. Trying to decide based on the potential risk of the vaccine alone would only be considering half of the problem.

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  4. This was great, Abigailā€”a real service. The videos were a fine adjunct to your writing.

    Yes; weā€™re all entering the great unknown, but your decision sounds very wise, and I felt that providing the reasoning behind how your particular regimen is being adapted serves as a helpful template for questions many people with varying conditions should adapt to question their doctors.

    Very glad you provided info for the CDC. Data! Data! Data! The more theā€”well, not merrierā€”but better.

    Hope you get full-strength protection with no hiccups to your customary regimen.

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  5. Thank you for sharing your experience on receiving the COVID vaccine and your side effects from that. This helps me to make my decision because Wright now Iā€™m a little skeptical on taken the vaccine.

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  7. Thank you! This is the best, well-balanced approach Iā€™ve heard! Youā€™re exactly right in researching carefully and weighing your options.
    My concern has always been about the almost mindless push for this vaccination. Iā€™m not opposed to getting it at all, but I do believe in research and asking questions before I blindly inject myself with anything. Another concern has been talk in our country (Canada) about a vaccine passport. I really hope we donā€™t go down that road as that is the point where we start judging and taking away peopleā€™s rights when they feel convicted about something. In my mind, thatā€™s communism.
    Anyway, good for you! Iā€™m glad you got it and didnā€™t have too terrible side effects. I think it was a smart choice in your situation!

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  12. Reblogged this on Marsha Ingrao – Always Write and commented:
    THIS IS A MUST-READ!

    Hi friends, you all remember Abigail. She has received the first dose of the COVID vaccine and talks about her experience. As an active cancer patient, her doctors took additional precautions to make sure she would be okay after the vaccine, and that it would be effective. I applaud her for being so brave. It sounded like she was really between a rock and a hard place as she and her doctors made the decision to go with the vaccine.

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  16. Dear Abigail

    I have written about vaccination if you or others care to visit my site. The current post on my home page.

    In essence if you have the vaccine you will get the ā€˜flu/Covid 19. See Covid 19 Summary if you want more info and links. You may not care to believe it all but I carefully researched it.

    I will always be happy to explain further.

    Kind regards

    Baldmichael

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    1. Thanks for commenting. Different vaccines do work differently and the Pfizer covid vaccine is novel in that it utilizes mRNA to literally change the way our bodies ā€œseeā€ covid. Most vaccines (and the Johnson and Johnson version) uses the old method of giving the body a small dose of the actual virus so that the body then ā€œknowsā€ what to look for. It can certainly get confusing!

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  18. Doing a little research, we learned this vaccine does not work in the traditional sense: using dead viruses to prompt a protective response. From what we’ve read and understand, the covid vaccine uses your mrna (messenger ribonucleaic acid) to instruct your body to protect. From what we understand, this has been studied over the past two decades (i.e. rabies), but not population-wide, and studies still don’t know the full long-term effect, even on something that has traditional flu-like numbers. Some writings indicate mild, serious, and very serious side effects, either earlier or later. I encourage people to research so we can have a more-informed populace.

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    1. Ok, so the Pfizer and Moderna vaccines use the mRNA method and there have only been very very few serious side effects. The vast majority of the millions of people who have gotten both shots have reported mild symptoms that resolve quickly. On the other hand, the people who have had COVID report many long term issues, some that appear to be permanent.

      As to the J&J vaccine, that’s the old way of doing vaccines, where a portion of the inert or dead virus is injected to teach the body what to look for. This vaccine isn’t as effective as the mRNA vaccines, but is certainly an option.

      All medicine has to start somewhere and the mRNA methods have been around for a long time, there just wasn’t funding allocated to study them sufficiently to know what they can do. Yes, I’m sure we will all be watching carefully for those long term potential issues, as we will with those who have had COVID. Personally, the concerns about COVID are far greater than the vaccine and I made my decision to get the vaccine with my doctors, as we all should.

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      1. Don’t know the reason for this post, as we encourage people to do their own research, verifying what I’ve learned or bringing new insights. The preliminary research and discussions have indicated all this as new, and the covid vaccine the first of population wide usage, and with varying symptoms, more will be known with the coming years. However, much of this is still unknown.

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      2. I’m not sure who “we” is, but I definitely encourage everyone to do their own research. The reason for my post was to share my own experience and encourage other cancer havers with the research that I’ve done and the input I’ve received from a variety of oncologists and other medical professionals within the breast cancer community. There is hesitancy, of course, in a variety of communities, for good reason.

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  19. Pingback: To Boost or Not To Boost, that is the question … – No Half Measures

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