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.

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.