As I sat with my sleeve rolled up, tears rolled down my face. A rush of emotions collided with my fears. Double masked, googles snug to my face, It was surreal. I knew what was about to happen was going to be liberating. Amen to the scientists! As a two time cancer survivor, I’m alive because of science. Science may very well save my life a 3rd time. The emotions were raw. This also meant I could go out again. Cautiously -- but I could. My son could also have a playdate. This day was huge.
Science Wins. Covid vaccine #1 was in the books.
Benadryl capsules in my pocket. I was ready or so I thought. I expected side effects. As an immunocompromised I also expected those side effects to be tougher on me and last 3 times as long. That’s usually the drill for me.
But what happened over the next 15 days was rough. Two ER visits, panicked calls to my oncologist and cardio oncologist and many scans later --kind of rough. Swollen lymph nodes, racing heart, high blood pressure that at times hit 190 and 200 and it terrorized me not for the standard 48 hours post vaccine but for 15. My cardio-oncologist (because of my history of so much extensive chemo) started me on blood pressure meds and almost each day he was increasing it because we couldn’t get it under control. I had a protocol - if my BP was X take this dose and so on. It was crazy. My lymph nodes were also swollen. The PTSD set in. Did this trigger a relapse? Why were my lymph nodes swollen?
The ER team at Penn knew exactly what was going on and told me, they didn’t believe this was the result of years of chemo suddenly taking a toll on my heart and that what I was struggling with were side effects. The ER doc also added that I wasn’t the only one struggling.
Every night I was scared to go to sleep not knowing what my BP would be overnight. It took 16 to feel like a normal human being again. Just in time for round 2.
No matter what, I would do it all over again especially if that is just a snapshot of what COVID would do to me.
In fact, I did. I went back for round two.
What I learned is what I want to share with you.
#1 Let your care team know you are getting the vaccine and ask what anticipated side effects for your health history.
According to a recent New York Times article, you CAN get swollen lymph nodes on the same side where you got the shot. What does this mean? On a scan it can look like cancer. It is causing alarm for many people. Researchers are now suggesting if you are a breast cancer survivor especially, you should get the shot in your hip or leg and NOT in your arm to avoid problems especially if you have had lymph nodes removed. The health department wouldn’t allow me to use my hip or my leg but now we know for next time. Talk to your health care professional to find out what is best for you.
The NYT article states that about 11 to 16% of people had swollen lymph nodes. The oncologist suggests that if you are due for your annual mammogram and you are getting the mammogram, know that timing is important. It could take 6 weeks before lymph nodes normalize.
If your swollen lymph nodes don’t go away, consult your oncologist.
According to my Johns Hopkins oncologist, it will also take 6 weeks for an immunocompromised patient like me to show if I’m fully protected from the vaccine.
Either way, I’m still wearing my mask. Maybe even two of them. Oh and my goggles!
Cancer patients and survivors -talk to your care team. Get vaccinated. But plan ahead. Plan for your scans. Plan for your shot. Plan for the side effects and be prepared for various scenarios.
The good news is that the conversation is happening and research is being collected.