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

CT Guided Core Needle Biopsy

My Back the Next Day After Dressing was Removed

That Tuesday, in Dr. N's office, she told us she was going to order a biopsy of an abdominal lymph node. Friday, my husband and I went to the hospital for our introduction to Interventional Radiology, of which we would become quite familiar. I liked the doctor I had that day and I loved the nurse. Her name was Angie. She was good with needles, which always helps, and she started an IV with no problems. While I was being prepped, the doctor came in and explained the procedure--he would be going through my back with a long needle to take a sample of an abdominal lymph node. Yikes!

Angie told me I would receive sedation consisting of Versed and Fentanyl. She said I would most likely be awake but just not care. She rolled me into the procedure room where she and a tech positioned me on the very narrow table, face down, feet towards the tube, arms stretched out over my head,  and strapped me down. Angie admonished me not to move and if my nose started itching (??) let her know and she would scratch it for me. They backed me in and out of the scanner a few times to align me for the doctor.

When the doctor came in, he proceeded to stick the needle in. I could hear it crunch and said so. He was surprised because he thought I was asleep. He told the nurse to sedate me and I was immediately asleep. When I awoke, I was on my back, on a gurney, with Angie wiping sweat from my face.

She rolled me back to the recovery room where 2 bottles of that delicious contrast liquid were waiting for me. After I drank it I was rolled away for an abdominal CT scan.

Both procedures turned out to be rather pointless and our insurance company originally balked at paying. The biopsy confirmed lymphoma but no other needed information was gleaned, such as the type and stage of the lymphoma. My first CT scan had already shown the abdominal lymph nodes.

It was only after I asked, demanded really, that I was referred to Dr. V, my Hematologist/Oncologist. My husband and I both have really appreciated our relationship with him. Much, much more about Dr. V and his wonderful nurses and staff will follow. 

The Beginning

Last August 10th, several family members got together for a few days visit to our twin grandsons. We all stayed in the same hotel and we all left sick with upper respiratory symptoms. We didn't speak of it at the time but we all thought there was something funky about the ventilation in the rooms. 

Monday, my husband and I woke with scratchy throats. Tuesday, I developed a scorching sore throat. Wednesday, at work, it became more and more difficult to breathe and I stopped on the way home for Mucinex.  Everyone else's sickness got better, but not mine.

I kept getting sicker and sicker. I started running fevers that lasted for weeks. I was struggling to breathe. I started having drenching night sweats. I felt so bad, but never, ever, not one single time did it ever occur to me that I had cancer.

I went to the family doctor 3 times, took antibiotics twice and steroids once. Nothing. Finally Dr. N gave me a breathing test which I flunked. She then gave me a breathing treatment and re-tested me. Still flunked it. She ordered an x-ray, which was abnormal, and followed by a CT scan--my 1st of many to come.

My husband and I met in Dr. N's office and she informed us that I most likely had Lymphoma. I had no idea what that meant, so she had to spell it out: c-a-n-c-e-r.

Twin A and Twin B