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So far I’ve written about the days when there are a lot of symptoms and things going haywire in your body.
But about a third of the days of the cycle – I’d say mostly in the last two weeks before another major treatment- almost nothing is going wrong.
On those days if you
- get enough sleep and rest,
- nap when you feel tired,
- take your vitamins and meds on time,
- eat even if you aren’t hungry,
- move around even if you’re sore,
- and don’t push yourself too hard
— it can occasionally feel like more like you’re down with walking pneumonia than something as scary as cancer.
I say almost nothing because it’s not as if everything is all rainbow-farting unicorns.
There are symptoms you have every day that are so minor you forget to mention them when the major ones are happening. Or that as a symptom itself, ie forgetting things or being generally confused, also known as brain fog or chemo brain.
These symptoms can vary from the aforementioned to itching above the site of your mediport to an actual minor rash at the site of your mediport, that keeps changing and affects such a small area that you just chalk that under “one of the things the drug manufacturer wrote under “you may experience”.
Then there’s a day when you have an atypical day.
A day when not only nothing is wrong, but you’re back to a better version of your old self for a few hours or all of daytime. It could happen just all of nighttime too, as in the case where you actually get to effin sleep.
Or go out and do a thing that anyone under 83 years old would do when on an outing.
Chemo again
I started the second cycle of my chemotherapy and targeted immunotherapy the first week of this month, May. I also go in weekly for blood tests, fluids and interim infusions as necessary every Tuesday- having cancer means a whole whole lot of doctor visits.
Not just to the oncologist or treatment center.
Pain management doctor.
Primary care physician.
Soon, a psychiatrist- mostly I’ve been fine dealing with my issues but I think it would be good to have a person to vent to so that my friends won’t have to put duct tape on my mouth LOL.
But back to the topic at hand…
It’s hard to find first person accounts of going through chemotherapy’s after effects
One of the gaps in knowledge that I wasn’t able to fill in my time of research was finding out what happens to a person experiencing chemo
1- in the days right after chemotherapy and
2- during the recovery cycle.
There’s plenty of articles on what happens after chemotherapy is completed. There are few first hand accounts of what happens after one chemotherapy cycle begins and when it ends. Also known as the recovery period.
The recovery period – that’s the period of time between when the chemo dugs have left your body and the start of the next cycle.
The targeted therapy’s primary function is to boost your immune system, so it can help you get rid of bad or malformed cells – such as cancer- the way it would for other types of cells, when your immune system is functioning properly.
In that process, some cells won’t grow, spread or will die off.
In the meantime, the chemotherapy is supposed to kill off your cancer cells, but can’t always tell the difference and may kill off rapidly developing cells in other parts of your body.
That’s important to know because this is part of why you need a recovery period – some of the side effects of chemotherapy and targeted therapy are a result of cells being killed off.
When some people lose their hair, it’s because the cancer medication killed off the cells that create their hair follicles. A good deal of the pain that happens in various parts of your body after chemo is because cells whose normal function would prevent that pain are dying off.
The day I was stuck on the couch with my legs over my head was because it was the only comfortable position on a day when I was probably losing cells in the lining of my stomach. It just happened to fall the same day my back was hurting. The back pain could have been for any number of reasons – bone pain, my spinal condition, nerve damage, at the time it’s hard to know.
Anyhoo- that’s why I recorded these chemotherapy cycle experiences in a blow by blow fashion- for other people who may have Lymphoma or Chronic Lymphocytic Leukemia (CLL).
In these attempts, now I think I’ve figured out why there are so few first person accounts of these issues, and where the ones that exist are. Because I made about 6 of these posts through the month of April. Yet only two made it to published status.
Why few are blogging about what it feels like to go through chemo
People ARE writing about it, which I’ll address in a few moments. But few people are BLOGGING about it, or giving a full chronological account from beginning to end.
First of all, it’s just hard to describe, even for a person like me who is a born writer.
Second, it takes so much out of you just to BE that there isn’t a lot of energy leftover for writing, and that’s if you’re the writing type to start with, and most people are not.
I found the same for creating period though. I was going to tell some of this in an audio podcast and felt that I could not muster up the energy to sort my thoughts out and promote it.
Then when I had the energy to create, I was either in too much pain from side effects to do a whole post or I was suffering from the effects of chemo brain, which is a real thing, and though I’ll joke about it, is often not a laughing matter while it is happening.
Third, having a cancer that manifests in the bone marrow hurts like a son of a bitch.
I had heard of bone pain and theoretically realized it was painful. But not until my first bone marrow aspiration and biopsy did I know what the hell kind of pain we’re talking about.
I have literally yelled and attempted to jump out of my skin.
It’s a sharp pain that nothing compares to- and I say that as someone who has suffered from decades of the heavy sometimes dull muscle-deep ache of chronic pain. And as someone who has also had acute stabbing or burning nerve pain, where it felt like my skin was literally burning like it would if I had a chemical burn.
Finally, chemotherapy is literally different for everyone. Some people sail through it. Different medications create different reactions in different people who have different types of cancer or conditions that existed before chancer.
My journey is a little weird because of my two chronic pain issues. I have a lot of discomfort and pain, but I also have this spark of life back that has been lost to me since I was in my 20s. Think about how you feel before your morning cup of coffee. I felt like that AFTER coffee. And when I gave it up for a while, it was like someone was pulling energy out of me.
If you’re here in support of me, this may be a good place to start skimming instead of reading.
I know some of this will be borderline worthwhile for some friends and family to read, but possibly super useful to people who have cancer, even if it’s not Lymphoma or CLL. But it may not be super-helpful or relevant to you if you’re not a cancer caregiver or fighter.
“Where do I find more information on what it’s like to go through chemotherapy?”
There are a couple of other places you can go to read about what the chemo recovery cycle feels like for people with Lymphoma, and more specifically CLL, and some of them are from people who are going through the same thing you are, or have.
You can go to forums like Health Unlocked and read forum threads for example, a favorite spot of mine.
However, a lot of those are closed to the public, and makes it harder to find specific information via search.
For example, I might be Googling a question like “is stomach pain normal after chemo” and I might get a thread on a page that I’d have to register to see past the first few paragraphs. I don’t want to have to stop and join every community I come across just to get the answer to a simple question.
Not to mention, Googling when your fatigue sometimes means being way too tired – or even asleep – by the time that whole process would have been completed.
The Struggle Is Real.
For the technical aspects of chemotherapy and what is going on in your body, I found this free ebook from Cancer.gov called “Chemotherapy and you“. You can read the PDF version in your browser or have it sent to your Kindle, which I found handy when sharing it with family and friends.
Do remember to share technical resources with supportive friends and family. They’re scared too, as well as scared for you.
There’s a fairly new resource in beta testing I love and it’s called the Spero for cancer app – right now it’s iOS only. (I imagine that’s because you have to make thousands of versions for Android phones versus a handful for the version of iOS that are out there. But don’t quote me, I’ll have to ask.)
You can have it sent to your phone by filling out the form at the top of any of their blog posts. Or you can download it from their site.
I like it because it’s like having a special place to share Twitter-length to Tumblr-length questions and thoughts about your experiences with cancer. They recently made me one of their community advisors, which made me feel really useful.
You if you get their app, talk to them on Twitter about it – they’re @speroforcancer.
There are more but I’m pooped.
Redundant ones I’ll probably save for a book I’m writing. We’ll get into that another day because I’m going to need your help.
Soon: The story of the day when my legs were stuck over my head.