Month: August 2013

Day 16 of Chemotherapy: WBC 0.6 billion cells / liter

Nadir is supposed to happen Day 10 -14 of chemotherapy.  Since it is Day 16 and my mom’s white blood cell count went from 0.4 to 0.6, it appears that she is on track!  We just need that number to jump to 5!  That would be 5,000 white blood cells per liter of blood.  Once it reaches 5, we can hop on a plane to California where she will be admitted to City of Hope’s Division of Hematology, a fantastic cancer center that focuses on Acute Lymphoblastic Leukemia.  We have already registered at City of Hope, so now we just need our discharge papers.  Go bone marrow, go! Do your thing.

Blood Pressure: Manual vs. Automatic

The automatic blood pressure machine has been giving extremely low readings so one of the nurses brought in an “old school” manual pump.  They blame the inaccuracy on the fact that my mom has a very slim arm and the cuff is too big for her.  My mom’s blood pressure reading has ranged from 77/48 to 110/60 in just one sitting, depending on who does the reading and which machine she uses.  This seems quite arbitrary to me.  Though I have always been wary of the nurse squeezing my arm tight with a cuff then relying on her counting to determine my blood pressure.  What if her mind wanders?  What if she blanks out for a few seconds? Does she just make up numbers?   It doesn’t help to Google these questions because the internet is full of articles about how most blood pressure readings are wrong, how people’s BP spike when medical personnel walk into the room and how cuff sizes really do affect your BP reading.  Thanks, internet.

The nurses and techs measure my mom’s vitals every 2 hours since at this point of her neutropenic state (<0.4 WBC count), she is at high risk for infection, which can also lead to sepsis.  Indications of sepsis include high fever and low blood pressure.  If her temperature ever reaches 100F, we need to take action! Therefore, she gets a visit from the Patient Care Tech (PCT) every two hours for her temperature and blood pressure readings.  Since she is a neutropenic, they also leave her own machines in the room so they are not shared with everyone else on the hall.  Below are the two machines.  I think they make quite the cute cross generation couple.

IMG_6013Left: Manual Blood Pressure Machine, Right: Automatic Blood Pressure, Oxygen, Temperature Machine

 

Hydration! 8 Glass of Water a Day!

Since my mom was doing well, they removed her the saline solution drip.  This means she needs to hydrate!  I have plenty of water for her in her room.  She slacked on drinking water one day and her blood pressure immediately dropped and she had to get back on the saline solution!  So now she is back to chugging water.  She has bottles of Smart Water in her room since Smart Water is easier for her to drink.  She has the 50 fl oz bottles in her room so we’ll just need to make sure she drinks about 1.5 bottles a day. Silly mom.  Stay hydrated!

Google Hangout! Across generations and Across the World!

Yesterday, in an ongoing effort to find ways to keep my mom’s spirits high, I emailed all the cousins to try and set up a Google Hangout with some of our relatives around the world.  We set up a Hangout for August 25th, 2013 4:30PT/6:30Central/7:30pmET/6:30am ICT.  My Grandma has 10 living children and probably more than 80+ grandkids and great grandkids.  Once the word got out that we wanted to do a Hangout, everyone wanted to join. The call lasted more than 2.5 hours and despite our hospital door being closed and pretty sound proof, I bet the nurses were wondering why they kept hearing a chorus of Vietnamese people yelling from our room.  If you have never used Google Hangout, one cool feature is that it recognizes who is talking and highlights their face on the center screen.  This probably works amazingly well with normal people.  With a group of Vietnamese aunts and uncles who are all happily and excitedly yelling, it was quite hilarious to see Google Hangout try and keep up with us.  

Below is an awesome photo my brother snapped of what happened.  He also wrote a little blurb about our grandma.

Grandma Pham:
-4’8″ Vietnamese lady
-1945: Survived Japanese oppression in Vietnam
-1975: Survived the Vietnam War
-Somewhere in between had 13 kids, 3 of which suffered sudden infant death syndrome.
-5 of which successfully became refugees and escaped to ‘Murica.
-Has 70+ kids and grandkids (prob 80+ whose counting)
-2013: Uses Google Hangout with headphones to talk to all 5 kids and the grandkids in the states.

GoogleHangout

Day 11 of Chemo: Last does of Vincristine!

Today, my mom receives her last dose of chemotherapy for this first cycle.  We are on Day 11 and the drug is called Vincristine (brand name = Oncovin).  It is given intravenously through her picc (peripherally inserted central catheter) line.  Her Complete Blood Counts (CBC) are as follow:

  • White Blood Cells: 0.3, severe neutropenic, high risk of infection.  Normal is 5.0-10.0 in healthy adults.
  • Hemoglobin: 9.2, no need for transfusion!  Normal is at least 12 for women.
  • Platelets: 58.  Normal is 150-400.  Concerning is below 20.  She is low, but not at the concerning level.

The WBC count is what we are watching the most. It needs to get above 5 for the doctor to let her get on the plane and above 2 for me to stop worrying about random visitors!  More about neutropenia and white blood cell counts here.

Here’s to a restful night.

Neutropenia, Nadir and Risks for Infection and Sepsis

I have read much about a neutropenic diet, nadir and infection in the past several days.  My mom is currently classified as a severe neutropenic, which means she is at high risk of infection.  Some definitions below.

Neutropenic

Someone who is neutropenic has low levels of neutrophils.  Neutrophils are the most dominant type of white blood cells. Levels of neutropenia are classified by the number of Absolute Neutrophil Count (ANC). The ANC is measured in cells/microliter of blood.  Below are the classifications from Wikipedia:

  • Mild neutropenia (1000 ≤ ANC < 1500) — minimal risk of infection
  • Moderate neutropenia (500 ≤ ANC < 1000) — moderate risk of infection
  • Severe neutropenia (ANC < 500) — severe risk of infection.

My mom is currently at severe neutropenia, with ANC < 400.  Using different units, sometimes this is also referred to as 0.4, instead of 400.  Where WBC count is 0.4, so the neutrophil count is even less than that!

Nadir

Nadir simply means the lowest point of something.  In Chemotherapy, the red blood cells, white blood cells and platelets all have their own nadir periods.  The white blood cell nadir period is critical because this is when the body is most prone to infection.  My mom is current in her nadir period and it may last for another 10 days.  We are on Day 10 of Chemotherapy.  Her white blood cell count may not get back up to acceptable until Day 20.  During nadir, we must be extra cautious.  This means keeping a watchful eye on what she eats and making sure her nurses understand this as well. Surprisingly, not all of my mom’s nurses are aware of her severe neutropenic state.  This is quite unfortunate.

Infections and Sepsis

Neutropenia and nadir simply means that she is at great risk for infection.  Infection can lead to sepsis.  We have to keep an eye on her temperature, blood pressure and urination frequency in the next 10 days.  Basically, her body’s army is gone and we home no little terrors come along during this time!  We can only do as much as we can to keep infection out of the room and away from her.  One of the ways to keep infection away is to stay on a strict neutropenic diet.  This basically means avoiding any fresh foods of any kinds.  This includes fresh fruits, veggies, nuts, raw spices, soft serve and anything that might foster bacteria of any kind.  Here is a pretty good chart from a surviving Leukemia blog with foods that we should allow and avoid. The Leukemia and Lymphoma website also has a succinct description of foods we should avoid:

  • Avoid all uncooked vegetables and most uncooked fruits. You may eat fruit that you can peel a thick skin off of, such as a banana or an orange. Cooked vegetables and canned fruits and juices are safe to eat.
  • Avoid raw or rare meat and fish and uncooked or undercooked eggs. Cook meat until it’s well-done. Thoroughly cook eggs (no runny yolks).
  • Avoid salad bars and deli counters. Buy vacuum-packed lunch meats instead of freshly sliced meats.
  • Consume only pasteurized milk, yogurt, cheese and other dairy products.
  • Avoid soft mold-ripened and blue-veined cheeses such as Brie, Camembert, Roquefort, Stilton, Gorgonzola and Bleu.
  • Avoid well water or boil it for one minute before drinking. At home, it’s okay to drink tap water or bottled water.

So here’s to the next 10 HEALTHY, INFECTION-FREE days!  Go Team Mama Pham!

Language Barriers – English, Vietnamese, Medical

I am learning the intersection of three languages:  English, Vietnamese and Medical!  When I am at the hospital, I often translate for my mom.  When I am not around, I imagine a lot of hand gestures and repeating happens.  I’m sure she and the nurses have developed a special language.  I would say my Vietnamese is intermediate – enough to read and write (maybe even create a poem), but most certainly not enough to translate all medical terms.  Therefore, the past few days, I have spent looking up various medical terms in Vietnamese.  Below are some key terms that have helped with translation for my mom and relatives:

  • red blood cells:  hồng huyết cầu 
  • white blood cells: bạch cầu
  • plasma:  huyết tương 
  • platelets: tiểu cầu 
  • cells: tế bào
  • cancer: ung thư

I found the following two websites quite useful:

Cytogenetics, Chromosome 11, Mixed-Lineage Leukemia (MLL)

Today, Dr. Lewis talked to us about my mom’s cytogenetics results.  I will try to describe this in a accurate way, but please keep in mind that my road to learning the language of Cancer is still relatively new.  I also need to brush up on some high school and college biology classes!

She has abnormalities in Chromosome 11. The results say:

Abnormal female karyotype with a deletion in the q-arm* of chromosome 11 in 4/5 metaphase cells available analyzed.  

These abnormal cells also had additional non-clonal abnormalities.

The remaining 1/5 cell showed a 46,XX karyotype.

Submission of a follow-up specimen to monitor karyotypic evolution should be considered as clinically indicated.  Karyotypic evolution often precedes disease progression. 

*I read that q-arm = long-arm

This basically means that she is high risk.  The abnormalities of Chromosome 11 affects the Mixed Lineage Leukemia (MLL) gene.  The possibility of a stem-cell transplant is quite high at the moment.  There is much to learn about cytogenetics and I will be updating this post as I learn more.

I found this article about Chromosome 11 and MLL.

Leukine, you troublemaker

This morning, during Dr. Lewis’ daily checks, he informed us that he found some blasts in her blood smear.  Blasts are immature white blood cells that should not be found in the circulating blood.  He mentioned this might be due to the Leukine injections in her stomach, which assist with the production of white blood cells to help maintain a level that can better fight infection.  I previously wrote about Leukine here.  Since the Leukine might be causing problems with blasts, he has stopped the Leukine injections.  For us, this means we will need to continue to be fastidious about what she eats, who she sees and what she touches so she does not get sick.

This means not allowing just anyone to visit.  Yesterday, one of her previous co-workers decided to stop by and despite all of her objections, brought a bag of overly-ripe bananas and home-made cold foods.  Ain’t nobody got time for that.

It is Summer. Less Hair is Better!

The oncologist is certain that my mom will lose her hair around day 10-14 of the hyper-CVAD treatment.  I have scourged the internet for ways to deal with hair loss, types of wigs and types of head coverings.  My mom and I have talked about this and we will probably cut her hair short before all this happens.  We may consider shaving, but have not had that discussion yet.  The internet is filled with opinions ranging from shaving it all off to leaving it long and letting it fall out at will.

To prepare, I have ordered two beautiful hats that will cover her head.   I have also visited the local Savannah American Cancer Society for support and they gave me a free wig for my mom!  The National American Cancer Society receives wigs from Pantene (the hair products company) and sends them to the local chapters.  It really was a joy to visit the local Savannah American Cancer Society, discuss hair loss and bring home a beautiful wig for my mom.  Thanks, Pantene!  We may also buy wigs one day and have them styled, but for now, it was a huge blessing to have a place to go that understands cancer and was able to empathize while I showed them photos of my mom and we picked a wig together since my mom could not physically be there.  She has said multiple times she doesn’t think she will need a wig and a hat will be fine, but it is better to stay prepared in case she changes her mind.  I have never gone through hair loss so I have no idea how that can feel.

Pictures soon to come.