Side-Effects List

 

 

 

Beau's Lines

 

 

I'm pretty sure I was more worried about side-effects of chemo than I was about the actual chemicals being pumped into my body. As it turned out I had good reason to worry. I had some doozies of side-effects.

 

Here is my Side-Effects List. These did not all occur at once, of course.  I had a combo platter of symptoms depending on where I was in the chemo cycle.

 

Alopecia (that means my hair fell out)

Anemia (and many blood transfusions)

Anorexia (but not Nervosa) a.k.a. lack of appetite

Anxiety (!!!)

Constipation*

Diarrhea*            *they took turns

Dizziness

Dry eyes

Dry, dry, dry, parched, peeling, skin

Edema (once I had elephant-sized feet and legs)

Electrolyte Imbalance

Fatigue

Fever. Fever.

Headache

Infections

Low blood counts

Nail changes (Beau's Lines)

Nervousness

Neutropenia

Peripheral Neuropathy and foot drop

Rapid Heart Beat

Shortness of Breath

Vertigo

Visual Disturbances (Ocular Migraines)

Weakness

Weight Loss

 

Most of these have gone away since I am no longer taking chemo. I do still have trouble with fatigue and I still have some balance and mobility issues. I also continue to have electrolyte problems--I have been referred to a Nephrologist for a consultation. Appointment is next week.

 

I think the most fascinating thing was what happened to my fingernails. Nothing felt bad or wrong but I developed pale bands that went from side-to-side across my nails. Dr. V said they are called Beau's Lines. They are growth arrest lines caused by a decrease of blood flow to the nail matrix. I got one for each chemo. By the time I finished, you could count the lines, like the rings of a tree, to see how many times I had chemo. Weird.  The lines started growing out once I finished chemo.

 

There are also After-Effects of hospitalizations, severe illness, and treatment for a life-threatening disease. I will talk about those in another post.

 

 

Beau's Lines half grown out

Hospitalization and the 9 Diagnoses

Here I am, sound asleep, receiving a blood transfusion and antibiotics.

My first chemo didn't go well. This was as bad as it would get.

Because I was so symptomatic, I was admitted to the hospital and the first R-CHOP was done there. I was discharged home on the 5th day. Four days later, I went to Dr. V's office for labs. My blood counts were very low--red, white, platelets--everything. Nothing was even close to the normal range.  And I had fever, so back to the hospital we went. Did I mention I felt miserable?

While we waited for a hospital room, I received, at Dr. V's office,  IV fluids, antibiotics, and a Neulasta shot to stimulate my bone marrow into making more white blood cells. I progressively felt worse and worse and left Dr. V's office in a wheelchair.

I remember getting to my hospital room and changing into one of their lovely gowns. I remember meeting my nurse. I remember pain setting in. I have tiny fragments of memory of several days. I remember being surprised one morning to learn that I had been in the hospital for over a week!

This is why I was hospitalized:

Neutropenic Fever
MSSA Port Infection s/p removal
SIADH
Stage III transformed Marginal Zone Lymphoma
Left pleural effusion s/p Thoracentsis
Pancytopenia
Anemia s/p PRBC transfusion
Hypophosphetemia and Hypokalemia
Deconditioning

Needless to say, we had to look up most of those words.

Things I know from my husband and his notes:

Day 1: Fever, shaking chills, temp up to 103.9; finally got hydrocodone for pain; Ativan; Clonodine after a tough round of fever with high BP and heart rate; by 1AM, vitals back to normal, temp to 100.

Day 2: (Pictured above) Hemoglobin down, transfusions ordered; Oxycodone and Morphine added for pain; 4PM CT scan and ultrasound done, more fluids, antibiotics, Albuterol for Wheeze (new today).

Day 3: Fluid in left lung, will see lung Doctor; lymph nodes shrunk somewhat; white count still way down. platelets about the same, hemoglobin up; Pulmonologist  says left lung less than 1/2 aerated; when platelets and blood count go up enough, will use needle to remove fluid from around lung and test to see if it is from the lymphoma; platelets are at 30, he wants a count of 60 to do procedure.

Day 4: Platelets 50; red cell improved; white not yet--still at 0.0; port must come out, Staph Aureus;
sodium down, limit fluids; 1 PM port removed.

Day 5: Platelets 75, still low; white count not up; sodium level 118, low, salt tablets ordered; Cipro and Unasyn ordered. Nephrologist ordered 3% sodium infusion, 100 ml. to raise sodium without adding water; kidney function good, but R is seriously retaining water and this dilates her sodium level and causes confusion, etc; water intoxication; sodium at 115; if it drops after infusion to 113 then it's off to ICU; 11PM Good News! R's sodium back to 118.

Day 6: Sodium up to 124; Platelets 123; white counts and Neutrophils up; all good news; may get PT today; may get lung procedure today or tomorrow.

Day 7: Thoracentesis done using a needle to draw off 1200 ml. fluid; fluid was bloody but no sign of infection; 1200 ml about 1/2 of fluid present but stopped due to pain and coughing from pleurisy which should subside in a few hours; 1PM chest x-ray showed normal but 02 saturation went down to 86%; got 2 lpm  02; level went quickly back up.

Day 8: Blood good; electrolytes good; sodium 124; phosphorus still low; no infection from lung fluid, will know more tomorrow; will add hydrocodone and d/c morphine; wound care nurse teaching.

Day 9 through 11, I can remember!  I started getting physical therapy; the fluid from my lung was negative for lymphoma; blood counts good. I was discharged on Day 11 with 11 prescriptions, a walker, orders for home health physical therapy, and a 1 week delay in Chemo #2.

View from my Hospital Room

Before and After

When I first became sick with Non-Hodgkin Lymphoma, it was suggested that I keep a diary of my experiences as I traveled on this journey.  There are plenty of reasons I did not.  First one being that I was so sick and felt I would never want to remember it. Secondly, I was in shock and couldn't fathom how gravely ill I really was. Writing it down may make it a reality I couldn't deny. Furthermore, there are periods of time I am unable to remember. My husband has filled me in little by little as I have continued to regain my health.

My Remission was confirmed in February and it is May now. I finally want to talk about what I have been through. I want my voice heard and it is my hope that someone who is where I once was will find my little corner of the Internet and be comforted and cheered. Things really and truly will be better. I promise. 

This photo was taken 6 weeks before my diagnosis and 8 weeks before my first chemo. I had no symptoms and no clue! I had never been sick and had just been given a clean bill of health a couple of months before this. My mammogram, pap smear, and all my blood work were perfectly normal. I took no medications of any kind and had never had any surgeries. I have always loved to cook and I believe in eating healthful foods. I went to the gym and was physically fit. I was healthy! Never had colds or flu. Never missed work due to illness. No complaints of aches or pains. No headaches. I can't have cancer; that is preposterous.

I miss my hair! I miss my color and the healthy glow of my complexion. I miss my scar-free chest.

~ ~ ~

Nine months later, it looks like 20 years have gone by. I lost a lot of weight very quickly and it sure shows in my face. Since I no longer have that nice layer of fat under my skin, it just hangs there. Because I have had a lot of trouble with chemo induced anemia, I have been as pale as snow. At least I am getting some color back. Here, I am wearing lipstick and eyebrows but no other makeup. And they say I look good. It makes me feel so sad thinking of how I must have looked when I was really sick.

Quick, put on a wig and scarf!