Thursday, September 12, 2013

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

Saturday, August 3, 2013

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 (!!!)
Diarrhea*            *they took turns
Dry eyes
Dry, dry, dry, parched, peeling, skin
Edema (once I had elephant-sized feet and legs)
Electrolyte Imbalance
Fever. Fever.
Low blood counts
Nail changes (Beau's Lines)
Peripheral Neuropathy and foot drop
Rapid Heart Beat
Shortness of Breath
Visual Disturbances (Ocular Migraines)
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

Sunday, July 28, 2013

Staying Positive

I believe a positive attitude helps health. I believe that people who can remain hopeful, determined, and positive have better outcomes when faced with illness. I believe optimism heals. I believe that God wants us to feel happy and confident.

I know that maintaining a positive attitude can be hard work and almost impossible to maintain when faced with major losses. . .of loved ones, relationships, security, health, serenity. There have been many times when I have felt hopeless and scared and sad and mad and worried and in pain and weak and sick with fever.

As I have journeyed through Lymphoma, I have had to search my soul and I have often had to reach very deep within to find something to be thankful for. Other times, my blessings are abundant, obvious, and easily felt.

To help myself stay encouraged while facing a life-threatening illness and coping with side-effects of toxic treatments, I have tried to keep my words and language positive.

It is very popular to use such language as battle with cancer, cancer warrior, the beast, the nasty beast, war against cancer, victim of cancer, monster, struggle, hate, cancer sucks, fight. 

I don't use any of those words. They are all negative; some are violent.  I don't use hateful words in any other aspect of my life and I believe in peace.  In fact, I'm glad my cancer has its own name, Lymphoma, so I don't even have to use the word cancer if I don't want to. I call it my Lymphoma Journey. I will not hate my Lymphoma as it has become part of me and I will not hate myself.

I try not to fear my Lymphoma. If it takes my life then that will be the way I go.

Thursday, July 25, 2013


I wish we could send  Bad Doctor   a bill to be reimbursed for the thousands of dollars he cost us, not to mention the sickness and pain, because of his bad work! Two hospitalizations and two additional surgeries as corrections for the 2 surgeries he did.

Bad Doctor gave me the gift of Methicillin-Resistant Staphylococcus aureus (MRSA). When I was told I had cancer, I was very brave but when I was told I had MRSA I broke down and cried like a baby. The doctor and nurse both cried with me.

Amongst the things I never wanted to know how to do, I was taught to give myself  IV's to treat the MRSA. I had a very sweet and super cool home health nurse who accessed my port and showed me how to clean and attach the bottles of medication and how to flush it afterwards. She came to draw blood for testing and also came to change the needle into the port. Afterwards, she came in and de-accessed the port.

A very large box was delivered to our home. It contained 24 bottles of the correct dosage of medication for a 90 minute infusion. It also included boxes of surgical gloves, masks, alcohol wipes, prefilled syringes with both saline solution and heparin for flushing my port, and additional supplies for changing the port and drawing lab work.

The bottle pictured above has been used. That post in the center is covered with a deflated balloon. When the bottle was new the balloon was filled with the medication (think: water balloon). As soon as I attached it to my port line and unclamped it, it would start flowing by pressure. I infused myself twice a day for 2 weeks.

I am thankful I was able to do this at home. The active infection is cleared up but it is doubtful I will ever be free of MRSA.

Bad Doctor. 


Tuesday, July 16, 2013

Bad Doctor

In the beginning of my Lymphoma Journey, I had a Bad Doctor. The most excellent Dr. V referred us to a surgeon to have a port-a-cath placement with ultrasound guidance and an underarm lymph node dissection for biopsy. Both procedures were done at the same time in an outpatient surgical center. I went straight from the surgical center's recovery room to the hospital for my first chemo.

It did not occur to me at the time to wonder why I wasn't having those procedures done at the hospital, since I was going there anyway.
The day after the surgery, my underarm surgical wound was draining at lot of lymph fluid. It was soaking the very thick bandages the nurses were applying and soaking my bedclothes and bedding. A nurse said the wound was not completely closed and reported it to Dr. V, who called Bad Doctor to come see about it.
About 8:30 PM, Bad Doctor came into my room, late, acting furtive and sneaky. He looked very unkempt and smelled bad. I'm pretty sure he had been drinking. He did not wash his hands even after I pointed out the hand sanitizer and gloves.
First thing, he starting scolding me for "telling everyone in the hospital" that he hadn't sutured my surgical wound. I promptly told him I didn't say anything to anyone, that I was sick in bed and couldn't even see it!
He had brought a stapler, a suture removal tray, and steri-strips with him. He said he could staple the wound but that the fluid would get backed up and I would get a swelling the size of a baseball under my arm! He was putting pressure on me to tell him what I wanted him to do.
My husband was down the hall, in the lounge, making family phone calls. I picked up my phone and told Bad Doctor I wanted my husband. Bad Doctor starting yelling at me!! He said he didn't have time to wait for my husband to get there as he only had 5 minutes and his wife was waiting in the car. Again, I snapped back at him, "He's in the hospital"! I have never had a doctor be so rude to me.
I buzzed the nurse and asked her to locate my husband. I think they both ran to my room. And surprise, Bad Doctor suddenly became Mr. Nice Guy when my husband walked in. My husband, the nurse, and I unanimously decided to send Bad Doctor away.  He left the room muttering something about God's will. Indeed. 
Was Bad Doctor really going to remove stitches and staple my surgical wound, in his allocated 5 minutes, there in my room, without sterilization or anesthesia of any kind, without even washing his hands??  Probably so.
I learned later that Bad Doctor does not have any affiliation or surgical privileges at the hospital! So that is why I had the surgery elsewhere.
And this was not the end of dealing with the after-effects of Bad Doctor's shoddy and nasty work.


Tuesday, June 18, 2013

Sick Food

During my hospitalization, the one I refer to as "that time I was so sick", I lost 22 pounds (in 11 days).

When I got home, I had no appetite whatsoever. Dr. V even wrote, "anorexia" (but not nervosa) in my chart. I was also very weak and needed to eat. My husband did a great job of feeding me, but it was a challenge for him. Almost nothing sounded good and thoughts of food smells was disgusting. Also, my spleen was very swollen from the lymphoma and pressing on my stomach, making me feel full even after eating a few bites. 

Here are the things I ate, almost exclusively, for about 6 weeks.

Egg Sandwich with Butter

Oatmeal with Raisins, Cinnamon & Butter with Toasted Raisin Bread and more Butter

Baked Bean Sandwich on Buttered Toast

Carrot Juice, Nuts and Trail Mix

And Thank God for Boost

Monday, June 10, 2013

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.