Wednesday, April 27, 2016

Medical Jokes 1

 Bad Medical Jokes and Puns 

Q- Why did the ambulance cross the road? 

A-     It was in-patient

Q- What do a doctor and a bartender have in common?

A-    
They both ask what ales/ails you?

Q- What is the hospital cleaning staff’s favorite type of music?


A-     Scrub-a-Dub Step


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.

2) Have people call the hospital phone not your cell phone

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.

PG Somerset

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.