Reimagining Leukemia (A blog by PG Somerset about how to face and live with cancer in the family.)
Wednesday, April 27, 2016
Wednesday, April 6, 2016
Conduct Management
So you've just gotten the dignosis of cancer. How do you let people know what's going on without being overwelmed. We did a few basic things that helped a lot. These are not all my ideas but are suggestions that were passed on to our family.
1) Have a friend or an extended family member act as your point person
There are a lot of details that you will not be
ready for: meals, picking siblings up, receiving gifts, companies wanting to
sell you services (it really happens). You will need someone to manage it. I
would suggest that this person be someone who you can share with but doesn't necessarily
share with everyone else. Sisters and brothers are great at this, but so are
members of your church family, a close friend, or so on.
They need to be someone who can field questions,
keep track of who brought what, and help keep the household organized while you
focus on getting through the days. If, like in my case, you live a few hours
from the hospital and don't get home durring hosptal visits this person or people
may be willing to drive up and drop stuff off...like underpants and caffeine
(yup, guess what I forgot to pack enough of). Pick someone who will be less
emotionally raw during this time and is someone with whom you can very honest
without fear. This is going to be someone who sees you at your absolute low
when there is no veil of civility between you.
You will want your cell phone for your own use.
You're on information overload, even if you don't feel like you are trust
me...you are. A good way to test this is count how many decisions are you
making that you fully understand both the short and long term consequences. I
mean really understand. Now count all the rest. Yeah, that's overload. So the
hospital phone becomes the office phone and you cell is the home phone. You'll
have different kinds of conversations on each.
3) Create a contact list and an old fashion telephone chain
Think of it as an analogue social media with a
human voice interface. How's that for some junk-English, marketing lingo. In
other words agree between you and your contact person who should call whom to
pass along useful knowledge.
4) Group your emails or social media contacts
Socal Media is useful for blasts, but sometimes
there are smaller groups you share different information with. By sorting
friends into different groups helps you chunk information in your own head. You
are a multifaceted person. You share information differently depending on your social
settings. Everyone does this. Shape the way you contact people to reflect this.
5) Tell people: Don't send 'get well soon' cards
With cancer, no one 'Get's Well Soon'. Most
childhood cancers have protocols that run for at least two years. Most will
'Get Well', it’s just not 'Soon'. This trip will last for years. You and your
child will be back and forth to clinics and treatments. There will be
month-and-months of chemo and medications with names so long they wrap around
the bottle. IT will end, just not soon.
This was something we did and I've been thanked a
few times for it. Letting people know up front that this is going to be going
on for years is really helpful. Everyone besides the primary caregivers
(including your patient) is outside the bubble forming around you; they will need help
understanding your child's timeline.
So, if not Get Well Soon cards than what? We asked
people to send jokey cards and post cards from interesting places. My son loves travel and a few friends
picked-up on this and started a post card campaign. It is still going on, just like
the cancer. Every card is a sign that love lasts longer than cancer.
Getting overwehlmed is way too easy; I hope these tips help you. Most importantly remember that you are not alone in this, dispite the bubble. There are lots of people out there who will want to help you. All you need do is ask. I say ‘all’, but we know that is really hard sometimes. Sometimes asking is an act of faith. I hope you have the faith to reach out.
PG Somerset
Thursday, March 24, 2016
Kindnesses - Walking the Walk
Recently I commented how wonderful was the story about how a 7-year-old
boy being treated for acute lymphoblastic leukemia was made an honorary police
officer (link to WABC article). Everyday
people are doing special things like this for sick children they don't know, yet
care about; most of the time these kindnesses go unreported. Sometime soon I'll
write about the postcards my son received, but today I'd like to relay another
kindness afforded him.
Chemo attacks
quickly-dividing cells. This is how it targets cancer, but it also goes after other,
healthy cells -- thus hair loss and so on. One of the many side-effects of chemo
is that it causes strange sensations and muscular weakness in the arms and
legs. It diminishes a child’s willingness to be ambulatory or active. And so, a
seemingly healthy, energetic child can melt away to be confined to a wheelchair
in just a few weeks.
Muscular
deterioration has been a major issue in our family. My son has quickly gone
from being a runner to only being able to walk with the assistance of a walking
stick or a wheelchair (and can barely manage steps). We have talked to nurses
and friends about this. They share my worries about him losing self-confidence
via a loss of mobility. As many of you know, self-confidence is the best
medicine for managing chemo side-effects.
Our worries
reached the ears and hearts of a local gym. Yesterday my son was extended a
6-month gym membership at Midway Fitness. He was greeted with a cheery smile
and the moral support that he will need to fight his way back to health. This simple
and yet generous gift will be life-changing for him.
Now not
everyone can offer a gym membership to someone fighting cancer, but if you are
looking to do something for someone, try offering to walk with them (and not
just metaphorically). Help them get out and feel normal, even if that means
pushing a wheelchair or shuffling along with them. Thank you to the people at
Midway Fitness and Racquetball for the offer to walk with us.
-PG Somerset
Tuesday, March 22, 2016
Torching the Normal - Busy Making Other Plans Blog
I met
this amazing family while staying at A. I. duPont (Blog
Link). Our sons' rooms were two doors down (I know that's a cheap 90's pop music
reference but hey...why not). Like so many of our neighbors, we walked a lot
more than the same hallway. Both Nate and my son have developmental issues
which make the dynamics of leukemia slightly different. Like his parents,
leukemia was not the first bit of challenging news our family faced. And that
is how many of my son and my treatment-neighbors think of this cancer, as a challenge.
Each
parent comes to understand that they have only two options: face it or flee.
Were we to flee then we would be running away from our own children. This
reality makes the days when you are overwhelmed and can't face everything much
harder. Each parent deals with this reality in their own way and yes, some do
flee. Don’t judge them; instead pray for them. Imagine the torture they are
enduring. But the parents I most respect are the ones who know when they need
to get a cup of coffee or a visit home.
Finding
one's center in a world full of chaos is not always possible. You might have
forgotten how to find it or can't afford the time to look, but it is there. It
is nearby and can be touched by performing simple acts of normality. For me it
was walking to the food pantry and getting a carton of milk or a yogurt, or
making a peanut butter and honey sandwich for my son. In my mind it was like
going to the grocery store, and it gave me the break I needed to think about
things I could not think about in front of my son. It was also a
hunter/gatherer act that helped to assure both of us that I could still provide
for him. Believe me, there were quite a few walks to the pantry.
Touching
normality does not need to be any grand gesture and, face it, who would have
the energy to do it anyway? For each parent there is a different way of facing
the cancer storm. I love the openness and kindness in my friend’s blog. It is
full of those moments. I also love that there is a happy ending
(http://busymakingotherplansblog.org/). If you need an uplifting biography
about how one family copes with more than they thought they might be able to --
then please have a read. And if you are in need of ‘touching normality’ then just
look up and around. There is something near you that will help.
PG
Somerset
Thursday, March 17, 2016
Sleeping at A. I. duPont
After five
plus weeks in the hospital with my son (but who was counting) I was totally
shattered. The whole time I knew (and worried) that I had to stay healthy to be
with him. This meant trying hard to get some sleep at night, but also sleeping
somewhere out of a draft. I am apt to get a sinus infection if I sleep too many
nights in a drafty place. To avoid this I took a page out of the Georgian’s
handbook (18th century Britain – i.e. Jane Austen, Henry Fielding, and Mary
Shelley - Not our beloved relatives three states to the south) and build a
canopy to sleep under. It worked well. I do have to emphasize that if you find
yourself in need of a bed at A. I. duPont and use this as a guide - be very
careful with the TV. I wouldn't recommend hanging the canopy unless, like me,
you really need it. I used a thin top sheet because it was the lightest weight.
I did
find that just sleeping with my head under the TV cut down on the amount of
forced air blowing on me. One final thing, yes I put this together every night
and took it apart every morning but one. Sometime I'll write about the routine
we kept so that we stayed sane-ish.
Saturday, March 12, 2016
The Orcs and Castles and Neutrophils of Cancer
Life
with cancer is tied directly to one's Absolute Neutrophil Count or ANC (not the
African National Congress). They are a measurement of how robust a person (or
your child's) immune system is.
Because I
like analogies, and because I have boys, here is how I think of Counts. Your
child's body is a stone castle with a mote and drawbridge and all that. His or
her ANC is therefore the measurement of how thick the castle walls are. Your
child's castle (or body) is under constant siege from orcs (germs as well as
the cancer) who really want to get inside and mess the place up. So obviously the
thicker the walls are, the better the chances is of keeping the orcs out. The
trouble is that both the cancer and the chemo undermining your child's defenses.
Bits of the castle’s fortification keep falling down, and the very skilled
builders (white blood cells called neutrophils) that can repair the damage keep
getting squashed under the rubble. More builders can be trained to help
rebuilding the castle's defenses, but it takes time to train them. In other
words, it takes time for the body to make new neutrophils to combat disease.
When the walls are thin your child’s ANC is low, when they are higher the body
is healthy.
Normal -
2,500 and 6,000
At Risk
- 1000 and below
Understanding
these numbers is a basic tool during treatment. Sometimes the castle is well
defended, while at other times...not so much. Treatment can only happen when
the walls are strong enough to handle friendly fire (or chemo). If it isn't
then the large sections of walls could collapse. And that would be really bad.
Tuesday, March 8, 2016
Delaware Wings - Good Chemo Food
(Sweet and (not so) Spicy Breaded Boneless Chicken ‘Wings’)
This isn’t
something that I would cook every day, but it is a fun treat of a meal. I’m not
a chef, I’m a cook. Day-in day-out I prepare meals for hungry mouths. I don’t
do fancy, I do tasty. This entrée is high in flavor and in calories, which is what
most chemo kids need. My family is split on the topic of spiciness. These ‘wings’
can be as spicy as you like by adding more hot sauce or a small, diced hot pepper
into the sauce recipe. Where this recipe really shines is in the breading. Because
it has brown sugar in it, the sweetness brings out the flavor of the hot sauce while
knocking back the heat. Served with a veg, this entrée can be a balanced meal
when your kid’s appetite may not be great. It also reheats well.
Meat
2 lbs. of Chicken Breasts and/or Thighs
Spicy Sauce
2 table spoon Butter
2 table spoons of Hot Sauce
(I use Lewes Road Kill because it’s my son’s
fav, but others work too)
2 teaspoon Smokey Hot Paprika
1 teaspoon Granulated Garlic
¼ teaspoon Salt
Slice
chicken into strips or ‘wings’ about two mouthfuls in size. Pat them dry with a
paper towel. In a bowl melt the butter and then add in all the Spicy Sauce ingredients
(I use a cereal bowl for this). Slide the ‘wings’ into a plastic Ziploc bag.
Pour the sauce in after it, and squish it around until all the chicken is
covered.
Allow
the chicken to marinate in the bag somewhere warm (a counter top or table) for
about 40 minutes. After marinating, spread the chicken onto a broiler-safe wire
rack or on a broiler pan. Space the strips so they are not touching and then place
the lot into your broiler. Cook for about 5-6 minutes, and then flip each strip
and broil for another 5-6 minutes. The strips should be cooked through so they
are the palest brown on the outside, contrasting with the darkness of the
marinade. Take them out of the broiler and let them cool.
If you
are cooking this for a future meal (a post-transfusion meal, or back home late from
a treatment) you can let them cool, sling them in a fresh plastic bag, and
plunk them in the refrigerator or freezer. When handling the ‘wings’ I still
treat them as raw, even though they’ve been cooked on the outside. If you want
to eat them the same night, then it’s time to get ready for the breading.
Sweet Breading
2 eggs
2 cups of Breadcrumbs (I use either Blanco or Traditional)
½ cup light Brown Sugar
2 tablespoons Wheat Germ
½ teaspoon Salt
In a pan
(I use a 14’’ cast iron skillet, but two rounds in 10’’ skillets would work
well too) with enough oil (corn, canola,
coconut, etc.) to cover the bottom, start heating on high. In one bowl beat the
eggs lightly; in a second bowl mix the dry ingredients. Coat each ‘wing’ with
egg and then do the same with the dry ingredients. Press the crumbs so that
they cover and cling to the ‘wing’. I lay them out on a plate after breading so
I can cook the whole batch at the same time. Once the chicken is ready and the
oil is boiling, slip the chicken into the pan. Cook for about one minute and
then flip each ‘wing’, and then flip again. Keep doing this until the breading is
a deep, dark, golden color and the chicken is white (if you used breast meat),
or caramel (if you used thigh meat). Either way, the ‘wing’ should easily cut with
a fork. Once they get to that point, pull them off the fire and pile the ‘wings’
onto a plate. It’s time for the tasting. I would suggest honey mustard for
dipping, but first try them on their own. You might find they don’t need anything
else. I serve them with Brussels sprouts. Enjoy.
-PG Somerset
PS - If you have food ideas that are rich in flavor and kid friendly please send them along.
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