Cancer Tired

Sometimes, I get so sick of saying “I’m just tired” and wish there was a way to measure fatigue because saying, “low energy” is an epic understatement when one has cancer.

Sometimes, I wake up with plans to do so much and then I do one thing and am done for the ENTIRE DAY. 

But I refuse to get angry at my poor body. I refuse to beat up on myself.

But honestly, as I say that, I admit that I am writing this in order to fight the urge to get angry and frustrated with myself, my limits, my body, and that just because I’m not who and how I used to be I do indeed still matter.

Why do I feel I matter only when I can be productive? Thoughts I fight daily:

“I’m not even working, so why can’t I…..” 

“My kid is 18, and it’s not like I’m in the physically demanding parts of motherhood, so why is it hard to even show up at things such as….” 

“I should be doing more yoga, walking, biking, cooking, building up (or at least losing less) muscle to improve my health but I’m too tired to fight fatigue.”

And the biggest one of all, “Why am I wasting my life watching TV,” which really means, “Why aren’t I writing, reading, or sleeping?” And the truth is, sometimes I am too tired to concentrate, blog, or create. And by sometimes I mean often.

I. AM. SO. TIRED.

And just writing those words makes me want to cry because apparently I don’t look as tired as I feel. I know this because I’ve asked if I’m even getting chemo now. I’ve been told I don’t look sick. And sometimes it doesn’t feel like a compliment but a challenge.

Let me be clear, I am very grateful to have hair and eyelashes and eyebrows. I’m happy make-up can cover my pale skin (when looking for shades of concealer at CVS, and wanting something paler than pale ivory, I joked that they needed more shades such as “anemic,” or “dying” which no one thought was that funny except me).

Anyhow, I am grateful to go out and for it not to be obvious I’m living with incurable cancer as I’m going through another round of chemotherapy to slow the cancer. I like blending in with everyone else and having a level of privacy that I didn’t have during the first round of chemo. Though my hair still isn’t the texture or length I am used to, I do have a head of hair and don’t have to be seen bald or wear wigs in the dead of summer and I’m grateful for both of those things. 

However, when I was bald, it reminded people why I was so tired and weak and feeling less than and expectations of me were lower. I don’t feel that same level of understanding now that my tiredness is less obvious or maybe I fear that those who love me are tired of my tiredness. And I understand that because my tiredness looks a lot like laziness, and sloth, and is never remedied by rest. I’m tired of being tired and saying I’m tired. But the tiredness is real and really tiresome.

For those who love me, need me, and want my company-which I’m grateful and lucky to say is a lot of people- it must be irritating how little I commit to or attend. I guess I was protected from some of these expectations, especially the ones  I have of myself, during COVID because we were all isolating and not socializing. And now that I don’t look or seem or sound sick, maybe I do just seem lifeless, lethargic, and lazy. Sometimes I accuse myself of being all of those things and then I remind myself of reality. 

Because again, I refuse to turn against myself or my body because I do know and understand how tired I am and I can put that tiredness in context, for myself and others. 

This morning, I woke up, and looked at the side effects of my chemo, something I’ve not done this time around because I’ve just wanted to deal with what comes as it comes and if it comes and not expect myself to get all side effects. And doing so was validating. Here they are. I’ve done four rounds in the last four months (on top of the carbo / Taxol I did a year before). 

Side Effects of Carboplatin

• Anemia
• Decreased Blood Platelets
• Low Levels Of A Type Of White Blood Cell Called Neutrophils
• Low Blood Pressure
• Stomatitis, A Condition With Painful Swelling And Sores Inside The Mouth
• A Fever As A Result Of Taking The Medication
• Chills
• A Skin Rash
• Puffy Face From Water Retention
• Erythrodysesthesia Or Tingling, Pain, Redness, And Edema In The Hands And Feet
• Headache
• Trouble Breathing
• Generalized Weakness

Source: https://www.rxlist.com/carboplatin-side-effects-drug-center.htm

DOXIL Side Effects

• Anemia
• Decreased Blood Platelets
• Low Levels Of A Type Of White Blood Cell Called Neutrophils
• Low Blood Pressure
• Stomatitis, A Condition With Painful Swelling And Sores Inside The Mouth
• A Fever As A Result Of Taking The Medication
• Chills
• A Skin Rash
• Puffy Face From Water Retention
• Erythrodysesthesia Or Tingling, Pain, Redness, And Edema In The Hands And Feet
• Headache
• Trouble Breathing
• Generalized Weakness

Source: https://www.webmd.com/drugs/2/drug-12120/doxil-intravenous/details/list-sideeffects

And then I also looked up the signs and symptoms of the deficiencies I have because right now, I am deficient (as in below normal) in sodium, magnesium, iron, and platelets. My platelets are VERY low, my anemia is moderate, and my sodium and magnesium deficiencies are mild but require supplementation (as in not all in my head). 

What are the signs of a low platelet count?

• red, purple, or brown bruises, which are called purpura
• a rash with small red or purple dots called petechiae
• nosebleeds
• bleeding gums
• bleeding from wounds that lasts for a prolonged period or doesn’t stop on its own
• heavy menstrual bleeding
• bleeding from the rectum
• blood in your stool
• blood in your urine

Source: https://www.healthline.com/health/thrombocytopenia#symptoms

What Are the Symptoms of Anemia?

• Easy fatigue and loss of energy.
• Unusually rapid heart beat, particularly with exercise.
• Shortness of breath and headache, particularly with exercise.
• Difficulty concentrating.
• Dizziness.
• Pale skin.
• Leg cramps.
• Insomnia.

Source: Anemia Symptoms: Signs of A Low Red Blood Cell Count

Common symptoms of low blood sodium include:

• weakness.
• fatigue or low energy.
• headache.
• nausea.
• vomiting.
• muscle cramps or spasms.
• confusion.
• irritability.

Source: Low Blood Sodium (Hyponatremia) – Healthline

This article lists 7 symptoms of magnesium deficiency.

• Muscle Twitches and Cramps..
• Mental health disorders. Mental health disorders are another possible consequence of magnesium deficiency. …
• Osteoporosis. …
• Fatigue and muscle weakness. …
• High blood pressure. …
• Asthma. …
• Irregular heartbeat.

Source: 7 Signs and Symptoms of Magnesium Deficiency – Healthline

Reading these lists reminds me my tiredness is real and not a lack of effort, energy, or positive attitude. So if you are struggling with your cancer related fatigue (or pain, or chemo brain, or anything), I recommend putting a similar list together and then reminding yourself, and maybe your loved ones of your ongoing reality.

For me, reading these list helps me remember that when I shower, dress, exercise, walk, water the plants, do errands, or really anything, I am actually astonishingly amazing. Often, I am working hard to look like I don’t feel terrible and occasionally I am too tired to even to pretend I am not.

It’s o.k. if all of our energy goes to staying alive some days and tolerating the toxic, brutal, and horrendous drugs and their side effects because the only other option is an even faster deterioration leading to death.

We need to rest because we are extremely tired, weak, fatigued, and impacted not only by chemo and it’s side effects but also because we are fighting cancer. Having, and fighting cancer takes a toll: 

Symptoms of ovarian cancer can include:

• Bloating
• Pelvic or abdominal (belly) pain
• Trouble eating or feeling full quickly
• Urinary symptoms such as urgency (always feeling like you have to go) or frequency (having to go often)
• Fatigue (extreme tiredness)
• Upset stomach
• Back pain
• Pain during sex
• Constipation
• Changes in a woman’s period, such as heavier bleeding than normal or irregular bleeding
• Abdominal (belly) swelling with weight loss

Source: Signs and Symptoms of Ovarian Cancer | Early Signs of …

We aren’t lazy. We aren’t losers. We are expending energy surviving cancer, it’s treatment, and the side effects.

We have less energy because our life force is a candle death is trying to blow out. We have less energy not because we are failing to generate a better mood or attitude. We have less energy because we are grieving the losses while trying to stay present and grateful for what we do have.

But there’s something else I have noticed and that is how almost no one rests well or enough.

Many of us routinely work ourselves to the bone, running on fumes, dig deeper and deeper and deeper into our reserves, in order to keep up with work or expectations or appearances and this culture of obsessive busyness is one I’m attempting to challenge and reject. And this rejection is not only because I have cancer or am doing chemo or have medication side effects, although that has helped me prioritize my health in ways I have never ever done in the past. This rejection is also because when I was healthy, and “just tired,” I didn’t allow myself to stop, rest, and reset nearly enough. I didn’t prioritize joy or fun and understand it is a type of fuel. Right now, I do not have the choice to rebound without rest, but when I did, which is for most of my life, I did not and that is on me. I hope others learn from what I am learning now. 

We all know life is short and no one is guaranteed another day, or good health, or good fortune, (no shattering news here), but still, I say it anyhow, because how many of us live like we believe or remember that? Not enough. I intend to keep trying to live with self-compassion and awareness and I refuse to turn on my sacred self.