Reset Osmostat and The Envy of the Clinic

 That time I was in the hospital, the time after my first chemo, the time I refer to as "That Time I Was So Sick", 2 out of the 9 diagnoses I had, were Hyponatremia and S.I.A.D.S. 

Hyponatremia is the medical word meaning that I had an electrolyte disturbance which made my blood sodium level too low. Normal blood sodium level is between 135 and 145 mEg/L. Mine was down to 115. That is very bad (and dangerous). It caused me to have severe headaches and confusion. If sodium goes low enough it can cause permanent brain damage, coma, and even death. If mine had dropped any lower, I was going to be taken to ICU.

Dr. V called in a Nephrologist (Kidney Doctor) who diagnosed and treated me for S.I.A.D.S. which is Syndrome of Inappropriate Antiduretic Hormone. I don't understand it, despite doctors explaining it and also reading about it. What I know is it makes the body fluids too dilute, thus making the sodium too low.

These conditions were caused by both my Lymphoma and the chemo they used to treat it.

After I finished chemo and all my blood levels were slowly coming back up to the normal range, my sodium stubbornly remained at 128. Because I was asymptomatic, Dr. V didn't think there was any clinical significance to it. But because my husband had seen how gravely ill I had been from low sodium, he remained concerned. So, Dr. V referred us back to the kidney doctor who treated me in the hospital.

Kidney Doc want me to do a 24-hour urine test. I was given an orange jug and a "urine hat" in a red biohazard bag. I was told to pee into the hat, which conveniently had a spout, and pour it into the jug, which was to be stored in the refrigerator, for 24 hours.

After I started the test, I quickly realized I was going to pee more than that jug would hold. I called the clinic and asked if I could use a jar for the excess--I was thinking about one of my canning jars. The nurse said yes, "as long as its clean".  Really. Did she think I was going to finish the jar of peanut butter and start peeing into it without washing it? As it turned out, I used a clean plastic milk jug.

The next day, when I delivered my 2 jugs of pee to the clinic, I thought I would be able to drop it off and go. But no, I had to have a seat in the waiting room, with my 2 jugs of pee proudly displayed. About 15 minutes later, I was called to the back and still lugging my 2 jugs of pee, which are quite heavy by the way, seated in the lab to have blood drawn.

There was already another woman there having blood drawn, but her nurse was not having any luck. I commented about my jugs of pee and the woman exclaimed, "2 jugs! I only had about this much", indicating a couple of inches with her fingers.

My nurse got into one of my big fat juicy veins right away and the blood flowed. Both the patient in the next chair and her nurse looked longingly at my body fluids--my 2 jugs of pee and my easily collected 2 vials of blood. As I walked away, the nurse was still gouging around in the poor lady's arm, trying to get into a vein.

When I returned to Kidney Doc, he laughed at the amount I peed--5 liters. All the testing they did came back normal. He said I no longer have S.I.A.D.S. and that my kidneys work just fine. He said I have Reset Osmostat. Which basically means my new sodium level is 128 and that is now normal for me.

I told him about my experience in the lab and he said, "I bet you were the envy of the clinic". 

 

 

Pictures at this post are compliments of Google Images

 

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

Hair Progress

This is my head with my few remaining hairs after 8 rounds of R-CHOP. The photo was made 6 weeks after my last chemo and the hair is just starting to come in.  Surprise! The new hair is pushing out the old hairs, so I lost the little bit of hair you see here.

Here is my head today, just one month after the former picture. My husband says it looks like a coconut with ears.

R-CHOP

I had no idea there are hundreds of drugs used for chemotherapy. I didn't know there are so many recipes and blends, nor that chemotherapy combinations are targeted to specific malignancies. Even people with Lymphoma, which I have learned is categorized into many subtypes, don't get the same drugs.

The only things I knew were the snappy nickname, "Chemo", that it makes you go bald and that it makes you vomit.

My cocktail was R-CHOP and consisted of:

R--Rituximab, which is technically not a chemo agent but a chimeric monoclonal antibody. MmmK

C--Cyclophosphamide, which my nurses called cy-toxin. Nice. It is a mustard gas derivative. Nice.

H--Doxorubicin Hydrochloride, which is red and my nurses called it "red zinger".  It is an anti-tumor antibody.





O--Vincristine (Oncovin), which is a plant derivative of the lovely periwinkle.

P--Prednisone. Also not a chemo drug but is used as an anti-inflammatory, treatment for nausea, and to stimulate appetite. It gave me energy and I joked about being on performance enhancing drugs.

I took R-CHOP through my port 8 times. I did lose my hair but I never threw up.

The side effects of chemotherapy are seemingly endless. I couldn't listen to Dr. V, the nurses, or even my husband when they tried to talk to me about possible side effects I might experience. It scared me. Fear and the fact that I believe strongly in manifestation made me cover my ears and beg them to stop.

The fact that I did not experience the classic side effect of chemo, horrible nausea and vomiting reinforced my idea that "not knowing" worked best for me. I knew that I would know what side effects I would have as they occurred.

Over time, as I settled into acceptance of my diagnosis and treatment, I sought out more knowledge. But my sickness, diagnosis, procedures, testing, and treatment happened so FAST! I was too stunned to process everything.

Port-a-Cath Placement

That first day I saw Dr. V, he ordered the placement of a port-a-cath (a central venous catheter), a small device, about the size of a quarter, which looks like some kind of transmitter. It is surgically placed under the skin of the chest, then an attached catheter (tube) is threaded underneath the skin and inserted into the jugular vein in the neck. This allows infusions without the need to have an IV started in the vein each and every time. I have had chemo and other medications, blood transfusions, and blood draws for lab tests, all done through my port.

This is the device causing the bump, which is not "accessed", on my chest in the photo above. To use it, a special needle called a Huber needle is inserted into the port's septum, the silicone center of the port. When a needle is in place, the port is "accessed".  My port has been accessed for up to a week, then it has to be changed.

This is a Huber needle. The needle is inserted into the port using the little grip that looks like a clip. The padded part rests flat on the chest and the little clip is folded down like a butterfly. The whole device is taped into place. The port is now accessed and ready to use. The blue cap is removed, then syringes and other specially made catheters can be screwed into place. The clamp is used for stopping the flow while the port is still accessed but not in use or while catheters are being changed.

Here I am with my port accessed, receiving an infusion. It really is convenient because both my arms and hand are free. I can used my computer, Kindle, eat, and all the things I do, while passing the hours I sit in this recliner. 

Hair

Natalie

 

Before I go into my fun with chemo, can we talk hair?

Everything I have heard and read takes the stance that chemo induced hair loss is basically a vanity issue. Though the articles are less blunt and say things like "women consider their hair their crowning glory". Then go on to talk about how much time and money women spend on hair dressers, hair products, etc. How devastating it is because women "identify" with their hair.

Yes, the looks aspect of hair loss is traumatic. (I look like my Dad!)  And, yes I have spent plenty of time and money on my hair. But that was not my greatest concern. I am a very private person. My dread of losing my hair was of being transformed into someone who must reveal to the world, through my baldness, that I have cancer. 

I didn't especially want my grocery store cashier or librarian, much less perfect strangers, to know that about me. I don't want people giving me that look.

I didn't do the head shaving party or take before, during, and after photos. Too sick to party. Too upset to want my picture taken.

I ordered a cheap wig named Natalie from the American Cancer Society catalog. It cost $48. They have some cute hats too (as well as plenty of ugly ones). Another place I ordered a few cute hats was Head Covers.

Stay tuned for much, much more about hair loss and regrowth.

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!