Tuesday, April 17, 2012

In lieu of

This post might seem kind of creepy.  I am just throwing it out there for discussion.  It is something to ponder...whether you are a patient about to have an elective tonsillectomy, a cancer patient, or just someone who is planning your financial future.
While I make many small donations to my favorite causes throughout the year, I don’t have thousands of dollars to give away.  Most of you are likely in a similar situation.
When it was time to name my “beneficiaries” on my pension plan, I listed loved ones (who I would like to bestow some funds to) should I have any money left at the end of my life.  Good luck with that family and friends!!! 

There is an organization in Maine that is very important to me.  I learned that I could allocate a percentage of my retirement portfolio to go to that group.  I designated that 5%  of my funds should go to this non-profit organization.  This is a painless way for me to make a donation, that may or may not be significant after I go.
Don’t have a pension or any earnings to speak of?  You can still do some good even after you are gone.  Make sure that your family knows that when the time comes for your obituary to be put in the paper, that you want your “in lieu of flowers" donations to be made to the organization of your choice. 
The ovarian cancer support group that I ran, was sustained for several years by the generosity of some of the women who were beloved members of the group.  They felt so strongly about our group, that they told their family members that their “in lieu of” donations should be made to our support group at the time of their death. 
Not going anywhere, anytime soon???  GOOD!!!!!!!  Make your thoughts known to your family now and then forget about it!!  Or, put your intentions in with your other "final" documents if this is something that you don't relish talking about at the dinner table more than once.  
I see many well intentioned grieving families, pick The American Cancer Society simply because it is a cancer organization and the name is familiar.  That is absolutely fine if the ACS has helped you, or you think it is a great organization.   But you may have other charities that are nearer and dearer to your heart.  Perhaps you would rather see a charity you love receive these donations, or a local charity where you are certain where the funds are distributed.
Have you volunteered for Habitat for Humanity?  Request that your “in lieu of” donations go to that organization.

Do you love The Stowe Weekend of Hope?  Request that your “in lieu of” donations go there.
Love your cancer support group?  Love the food pantry that helped you out during your time of need?  Request your “in lieu of” accordingly.
One of my favorite patients was a huge advocate for animals, and she had her “in lieu of” funds donated to her favorite local  "no kill" pet shelter.
My beloved 90 year old mother will never forget the assistance that the Veterans Administration gave to my father.  She is also grateful for the assistance the NH Easter Seals gave to my grandmother when she had TB.  Well into her nineties, these were the main charities she contributed to.   One might assume that she would have wanted her donations to go to these organizations upon her death.   We had  a discussion about this topic before she passed.   I learned that her "in lieu of" choice was not those groups, but the beloved non-profit organization in Maine that is a family favorite.  
Bottom line:  pension beneficiaries or “ in lieu of” donations are a way for you to donate to your favorite group or organization, even if you don’t have the funds to do it yourself now. 

Depending on how many friends you have, the amount of the donations in your honor could sponsor a support group for a year, or pet supplies at a shelter for a year.  Perhaps the donations could provide a scholarship for 2 cancer survivors to attend The Stowe Weekend of Hope.  Charlene's Dream could provide mastectomy bras or lymphedema sleeves to help out breast cancer survivors with your donation.  A SAMFund donation might help that young adult cancer survivor pay his final tuition bill or his rent for a month.   Look at what your monetary donations could provide to Habitat for Humanity:

  • $10 = Box of Nails
  • $35 = Roof Shingles
  • $50 = Low Flow Toilet
  • $75 = Window
  • $100 = Kitchen Sink
  • $150 = Front Door
  • $500 = Siding
  • $1000 = Wallboard
  • $2000 = Flooring

  • A special shout out to my friends....when I go, you had better pony up at least $150 for a front door for someone well deserving at Habitat.  Because if I find out that all of your donations only add up to enough money for a "Low Flow Toilet", you had better believe I will absolutely find a way to haunt you from beyond!!!!!  :)


    My heart is warmed when I read the notes from the loved ones of a deceased member of our support group (notes are usually sent along with the "in lieu of" donations).  Often they mention how much that person loved our group.  I am reminded that our group made a difference in the life of that person. 

    If you can't afford to send money to that non-profit when someone passes away, consider sending them a note telling them what their organization meant to the person that passed.  Sometimes these non-profits can use this on their "testimonials" page (although I say that with the caveat that you may forever be added to their mailing list). 

    The financial contribution that you have designated in advance?  It will help sustain the organization that you love even after you are gone. 

    Just saying....it's something to think about when you are getting your "Ducks in a Row". 

    Hope this helps!


    Sunday, April 8, 2012

    Neutropenia and Febrile Neutropenia (what is she talking about??)

    copyright universal pictures animal house

    One hundred point four, One hundred point four.....
    Repeat over and over in your best Dean Wormer voice (when he tells Blutarsky his grade point average in the movie Animal House is:   "Zero point Zero").

    Repeat after me: 100.4, 100.4, 100.4

    Here's my take on the white blood cell (not that you asked!!):
    The job of the white blood cell is to protect the body by fighting off infections that threaten it.  There are different types of white blood cells (see below), but basically "The Navy Seal" (or creme de la creme) of white blood cells, and also the most prevalent, is the neutrophil.  Neutrophils sense bacteria/infection or a "foreign invader" and they are the "first responders" on the scene.  They divebomb to the site of infection and gobble up all of the bacteria.  A Navy Seal would consider their mission a success and go off to do other great things.  A neutrophil gobbles up the "infection or invader" and then basically feels its' work is done and dies off.   The neutrophil is a selfless hero!!

    When we are healthy and feeling well, we take the neutrophil for granted.  We have plenty of them, they do their job and we don't care about them.  When you are getting chemotherapy, you realize the importance of neutrophils, and you will ask about them every time you have your blood drawn.  You will tell your family and friends all about them too.  People will start refusing to sit next to you at dinner parties, because you now spend hours waxing on about the virtue of the neutrophil : )   Some Republicans will get lured into sitting next to you at a dinner party, thinking that you are talking about Newt Gingrich, when in reality you are talking about Neut-rophils (very lame attempt at humor, I know!).  They will disappear when they realize that you are talking about a white blood cell and not a pasty old white guy.  But, I digress!!

    Have you ever used a soup bone?  Think of that area in the middle of the bone.  We humans have  tissue in the middle of most of our large bones called the bone marrow.  Millions of white blood cells, red blood cells and platelets are made here.  The large bones:   your sternum, skull, pelvis, long bones of your legs (femur and humerus).

     New white blood cells are constantly being made, as old ones are dying off.  These are what we call "rapidly dividing" cells.   The emphasis on this post is fever and low white blood cell counts so we will save more talk about platelets and red blood cells for another post.

    We have gazillions of infection fighting white blood cells.  If someone near you coughs or is sick, your white blood cells/neutrophils gear up to protect the body.

    When we give you chemo, it affects the bone marrow, so we wipe out large amounts of white cells, so your body's defense system doesn't protect you like it should.  You have fewer troops to fight the enemy.

    The good news:  chemo kills rapidly dividing cells.  Cancer cells are rapidly dividing cells.  They are big, unorganized, not shaped like normal cells and they proliferate like rabbits.  They grow fast and out of control.  So,  chemotherapy kills cancer cells.....good, that is our goal.

    The bad news:  chemo kills rapidly dividing cells.  There are some healthy "normal" cells that also come under the "rapidly dividing" category.  Your white blood cells, red blood cells, platelets in the bone marrow.  Also your hair follicles, the lining of your mouth, throat, GI tract.  These are all rapidly dividing cells.  Chemo kills these too.  On the positive side, new cells are always being produced.  On the negative side of things, the chemo killing off your healthy rapidly dividing cells are why you experience side effects like hair loss, mouth and throat sores, nausea, vomiting, diarrhea.  Until the reinforcement new cells arrive, you have to deal with the side effects (your doctors and nurses will tell you what you can do to tolerate most of these side effects). 

    When we give you chemo, we don't wipe out the white blood cells (or red cells or platelets) the very first day.  Usually the bone marrow starts to be affected a few days after chemo is given.  But the time of maximum impact to the bone marrow is about 7 to 14 days after your chemo dose.   This is called the nadir.  This is usually when you feel like an 18 wheeler has run over your body.  This is also when you are more prone to getting infections because your white blood cell count can be really low. 

    Since your white blood cells fight infection, when they are low in numbers they have a harder time or may be unable to fight off the infection/invaders.  So, we tell patients to be especially careful 7 to 14 days after chemo as they will have fewer white blood cells and they will be more susceptible to infection at that time.

    We check your white blood cell counts frequently during chemo.  We know that we are going to drop your white blood cell counts with chemo, so we have to have your white blood cells/neutrophils at a certain safe level to start with in order to safely give you your chemo.  If they are too low, we are going to have to hold your chemo that day.  This can get frustrating for cancer patients.  You get yourself mentally geared up for the next cycle, only to be turned away that week and told to come back later.  It would be dangerous for us to treat you that day, because we know that your neutrophil count is already too low.  If we drop it lower (which we will) and it becomes REALLY low, it could become life threatening. A Low neutrophil count is called "neutropenia".

    Some patients get postponed for several weeks until their "counts" come up.  Others return to normal in a few days.  It all depends on the type of chemo, the number of treatments you have already have and just some people's bone marrow recovers more quickly than others.

    When we draw your blood and your blood counts come back, we calculate the Absolute Neutrophil Count to determine whether it is safe to give you treatment or not. 

    This from ChemoCare.  "Normal Adult Values on a "CBC" or Complete Blood Count with "types" of white blood cells."  This shows you the breakdown of white blood cell types, including our hero the neutrophil:
    White Blood Cell Total4-11 k/ul

    "One measure of risk is the absolute neutrophil count (ANC). The ANC is calculated by multiplying the total white blood count by the percent of neutrophils (also called segmented neutrophils, segs, polymorphoneucleated cells or PMNs, polys)
    Total white blood count x % neutrophils* = ANC
    * Neutrophils may be reported as segs & bands (a band is slightly less mature form of a seg). In this case add the % of segs to the % of bands then multiply by the total number of white blood cells.
    (% segs + % bands) x Total white blood count = ANC

    Risk of Infection based on Absolute Neutrophil Count (ANC)
    ANC greater than 1500No increased risk of infection
    ANC 1000-1500Slight increase in risk of infection
    ANC 500-1000Moderate increase in risk of infection
    ANC 100-500High risk of infection
    ANC less than 100Extremely high risk of infection"

    Usually we hold chemo if your ANC is less than 1000, but it all depends on the type of chemo regimen we are giving you.  Also, for transplant patients there are other rules and that will be in a later post on transplant.

    What does this mean for you????   If you have a low level of neutrophils AND you have a fever you  have "febrile neutropenia", and are at risk of developing what could be a life threatening infection.  Infection is our biggest concern with anyone on chemo. 

    So, if you have a temperature of 100.4, you need to call your cancer team/doctor on call, and come in to be admitted to the hospital.  You may not have an infection, but we are going to check your counts, cover you with antibiotics or antifungal drugs or both, and we are going to culture you to see if you have an infection or not. We are going to watch you like a hawk to keep you safe.  You may never actually get an infection, but the admission to the hospital is necessary to keep you safe.

    If you have a temperature of 100.4, please don't screw around.  If it happens at 2 in the morning, PLEASE don't wait until the clinic opens at 7 a.m. to get help.  GET INTO AN EMERGENCY ROOM, IDENTIFY YOURSELF AS A CANCER PATIENT RECEIVING CHEMO TO ANYONE WHO WILL LISTEN.  Most likely they will put you in a protective room, do a fever workup and will get a dose of IV antibiotics into you ASAP and then they will transfer you to the inpatient cancer unit.

    Some hospitals use 100.4, some 100.5 as their cutoffs for fever.  Bottom line, Temp of 100.4, get moving.  There are different levels of risk for neutrophil count and how high your fever is that decides whether you get treated outpatient or inpatient.  The National Comprehensive Cancer Network [NCCN] has guidelines or algorithms that most hospitals use to treat cancer patients with these issues.

    Did I write all of this to scare the bejesus out of you?  No.  This is the one thing we never joke about with cancer patients.

    Just remember one other very important thing.  All this yapping about rapidly dividing cells yada, yada, yada.  Just like the other side effects of chemo....all of this is temporary and will return to normal again one day.

    So....if you are chilled, check your temperature.  If your temperature is 100.3, check it again in a few minutes.  If your white count is really low, pack a bag, call your doctor and make plans for someone to drive you to the hospital. 

    P.S.  No rectal thermometer use if you are a cancer patient (phew, right?). 

    More precautions to take in a later post, as you are probably fast asleep after reading this one!!

    Here's a link to a calculator, so you can figure out your own ANC from your lab report if you want to:


    Other reference links for this post:







    Tuesday, April 3, 2012

    Port-a-caths Part II

    Port-a-cath is Not a Cruise Ship Destination...Part II
    For full information about Port-a-caths, see the links below.  There is plenty of information already out there about ports, so I won't reinvent the wheel.   I will write about what I think are some of the major points of having a Port-a-cath (aka "port").

    What is the #1 question cancer patients want to know about Port-a-caths?   They want to know what it looks like when it has been inserted into a real human being (see photos below).
    What is it?  It is a "venous access device" or an implantable device attached to a catheter that sits under your skin.  The catheter part is threaded through one of your major veins and it kind of "hangs" in the top part of your superior vena cava.  We give chemo through it  (or IV fluid, or blood, or TPN).   Instead of giving a boatload of stuff through one small vein in your arm at a lower rate that will take forever, we can give it in a port that flows into a bigger "vein or vessel".  A lame analogy?  If you have a little tiny pipe that drains your sink, then it will take longer to empty out your sink.  If you have a large, open pipe, the water in the sink will drain quickly. 
    Some types of chemotherapy are especially toxic.  That's good for attacking cancer cells, but hard on your healthy tissue.  Chemo can damage the healthy skin and arm tissue if it is running through an IV that becomes dislodged out of a vein (can happen with movement of your arm).  This causes it to leak out of a "normal" arm IV site or vein into the healthy adjacent skin.  With a port, we don't have to worry about this.  The port is sutured in place and "buried" under a little  pocket of skin to hold it securely.  The catheter part goes into a large vein.     
    Why do I need it?  We can draw blood out of it, and infuse chemo, blood products, IV fluid into it with just one needle stick.  Even if you have great veins or "pipes" (as we say in the business), if you need chemo for 6 months or 1 year, we are going to "use up" some of your veins.  Each time you visit us, we might have to hunt for decent IV sites, apply heat and "stick" your arm 2 or 3 times before we can find a vein.  As you can imagine, none of this is fun.  It is actually painful and upsetting.  Multiply those numbers by many clinic visits throughout the year, and now you know why it might be beneficial to have a port placed.
    A port can become your best friend.  Nobody is excited about getting one, but once you have one,  you will be grateful that you had it inserted. 
    Here's what a port looks like by itself.  Out of the box.  Not in a human.  The two on the left are single lumens and the two on the right are double lumens (single barrel or double barrel!!).  On the double lumen, even though it looks like they have 2 "heads" and only one "tail", there are actually 2 tails inside the long catheter. 

    They might put a double lumen in if you are going to get a "big guns " chemo regimen or bone marrow/stem cell transplant.  These are regimens that typically have several different types of chemo to give.  There are treatments that require you to get 2 infusions at one time (one type of chemo in one side and one in the other side).  Or you might get chemo in one side and IV fluid in the other side. Or you might need one side to infuse blood products or IV antibiotics, and one to infuse TPN (Total Parenteral Nutrition aka "IV Food in a Bag").  There are even triple lumens.   

    Basically the port is a surgical steel "metal" device with a rubber stopper covering it, with plastic or silicone surrounding it.   Here's another angle of the device without the catheter or "tail" attached to it.

    1)  To "access' the port, the nurse first looks for "your bump". She then cleans the site with antiseptic solution (The port lies flat under the skin, is attached to the catheter that goes into your large blood vessel).

    2)  The nurse will feel around your skin until she locates the port. She will then hold it steady between her fingers with one hand, and with the other hand she will take a hook shaped needle and will stick the needle into the rubber "stopper" area on the top of the port. She will do this quickly in one motion as if she is playing darts. The quicker she does it the less it hurts. She can "feel" the needle go through the rubber stopper and she can "feel" it if the needle hits the metal base below.
    The orange stuff you see is antiseptic/betadine not blood, so don't get skeeved out by it!

    Actual port "bump" of "Dee-Hee" a fabulous, gorgeous ovarian cancer patient who agreed to let me take this photo!!!  Thank you Dee-Hee!!!
    Here's the antiseptic that has been rubbed on the port site.   The nurse steadies the port between 2 fingers of one hand.  With her other hand she uses the hook shaped needle to access the port.
    She will attach a syringe, will pull back on it and make sure she can get a good blood flow.  Once she has, she will tether the needle down with plastic occlusive film and tape to hold it in place.

    Huber needle with foam pad, attached to IV catheter tube.

    Dee Hee's port with plastic wrap over the "Emla" numbing cream.

    Here's another view of the components

    One stick. Blood comes out and goes to lab to be tested  (where they check your blood counts). IV fluid and chemo go in. At the end of the session, the needle is removed and you go on your way.

    Things to remember:  

    Once the insertion incision is healed (7 to 10 days after it is inserted), you can swim, bathe with it, leave it uncovered and open to air. 

    It needs to be flushed once a month with a heparin (aka blood thinner) solution to keep it patent.
    If you are going  3 months until your next MD visit, remember that you will need appointments booked monthly for your nurse to do a quick "flush".

    You can get "Emla Cream", which is an anesthetic cream that you put on your skin (with a piece of saran wrap or plastic covering that your nurse will give you) over it.  Put this on when you leave your house and then 1 hour later when  you are sitting in the clinic it will have numbed up your skin a bit and will ease the discomfort of putting a large needle through it.

    Tell the radiology folks that you have it if you are going for an MRI or scan.   If you are going through security at the airport, you had best tell the security folks too.  You will get a card to carry in your wallet with basic info about your port. 
    Here are some good websites that give an overview and explain how ports are inserted.  If you are a patient or family member, I beg you not to watch any of the "port insertion" videos on YouTube that show you the actual insertion.  These are meant for instruction for placement and are disturbing to look at unless you are into Operating Room surgeries and dig that kind of thing.
    2 Fabulous Nurses who have "accessed" Dee-hee's port

    Remember....the port is very useful during chemo.  But as with all of chemo side effects, your port is only taking up rental space on your chest temporarily.  It will be removed after chemo is finished (when you and your doctor decide when you want it removed).

    Monday, April 2, 2012

    Massachusetts Ovarian Cancer License Plate Initiative

    Drawing by Jamie Dudley
    Profile Picture
    Margie Ferreira!!

    Margaret’s Mission for Ovarian Cancer Awareness

    This is a project of LOVE by the very wonderful Margie Ferreira (who was kind enough to speak at our Ovarian Cancer Retreat last fall!!).   She truly honors her mother (who had ovarian cancer) with this initiative.  The goal is to get 1500 people to "pre-order" a MA Ovarian Cancer Awareness license plate, so that this dream can become a reality and the license plates can be made!!

    It's more than just a license plate.  It is about spreading the word and raising awareness of ovarian cancer.  If you know anyone with ovarian cancer, please help RAISE AWARENESS by signing up !!!  Fill in the application at their website (for more info see below).

    TEAL IS THE NEW PINK!!!!!!!!!!!!!!

    I signed up.  Would proudly put this on my car in honor of the many amazing women I know (and have known) with ovarian cancer!!! 

    I find it absolutely crazy that they need 1500 people to sign up for the MA Ovarian Cancer Awareness License Plate Initiative and so far only 50 people have signed up???? What??? Come on people!!!

    Please see the links below for more information and for more of Margie's story.
    Margaret’s Mission for Ovarian Cancer Awareness
    P.O. Box 426111
    Cambridge, MA 02142
    Telephone: 617.413.7751


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    (drawing by Jamie Dudley)