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.

M R S A

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. 

 

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.

 



 



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
 

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.

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

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.