This time though. . .it wasn’t about chemo-brain.

I was getting ready to send out some checks this afternoon at work.  I process accounts payable for my company and, as you can imagine, today being Friday AND the 1^st of the month, I was fairly busy.  I was sealing the envelopes with a glue stick, which was now dry and gooey.  So, I went into the conference room storage closet to get another.

And. . that’s where I stood and stood;  in front of the storage closet, staring blankly into the many shelves of supplies.   Let’s see, there’s paper, pens, pencils, envelopes, post-it notes, batteries, file folders. . .why did I come in here again?  It’s easy to blame this on chemo-brain, but this sort of thing happened to me long before I ever enjoyed the pleasure of toxins being pumped into my blood stream.

Come to find out. . .it’s really “A Thing.”

It appears that the culprit is, indeed, the DOOR.

You think about something in one room and as you pass through the doorway, your brains “resets,” takes in the information from this new space and starts encoding it as memories.   All this makes you forget why you went in there in the first place!

I finally remembered the glue, stamped all the envelopes and dropped them in the mail slot.  Now, where did I put my keys?

It’s hard to believe it’s been 3 years. There is still so much to do, so much pain, so much want. Could we, this Sunday, pause from our family dinners, our shopping sprees, our warm church pews and pray for a blessing on Haiti?

As many of you may know, I recently traveled with the One5 Foundation team to Malawi and honestly, the trip was so overwhelming, I am just now being able to put it into words.  I hope you’ll take a moment to follow the link above to read about the Nutritional Clinic and the Meals of Hope program as portrayed by Mercy Chikhosi Nyirongo.  She has beautifully shared the story on her blog and having read her explanation of the program, I will continue by adding a narrative of my experience here.

First, and foremost, I’d like to thank Mercy and her team for taking such excellent care to teach me as a volunteer, but also to call my attention to unusual cases so I could learn and share the story.  And, thank you to Mike for taking so many excellent pictures!  You are an artist, my friend.

And so we begin. . .

We arrived at the compound of the MUMC in Nancholi, early in the morning.  I was told this would be a very busy day for the nutritional clinic, as we were expecting to see 40+ clients in just 4 hours.  I was a little nervous, not knowing what to expect or how I would be able to help.  Mercy escorted me to the clinic, past the trailer currently holding many clinic supplies, down the dusty road – now muddy from the previous night’s rainfall, past a pile of bricks with a detour to spot a millipede and into a small white building with a sunken porch where many clients were already waiting to be seen.

I was given a brief introduction to the people who would be teaching me to serve here and we were off and running.

New clients are given a nutrition lesson during their first visit.  They are  taught to use locally available, nutrient-dense foods to supplement their diet.  Maize is a staple food of Malawi.  It is eaten as a porridge and as a side dish with vegetables and, if available, meat.  Many of the items on this table can be added to this staple meal to boost the healthfulness of the meal.

Pictured here:  raw soya beans, processed soya, soya flour, groundnuts and groundnut flour, casava flour, fermented millet and its ground version, dried pumpkin leaves, moringa leaves and ground powder and ground, peanut butter like product which is intended for small children.

Once the nutrition lesson was complete, we started evaluating clients.  Some were young children who had been referred to the clinic due to malnutrition.  Other clients were adults who may be suffering from a chronic, debilitating diseases such as HIV/AIDs or TB.  I was also introduced to some women, who had walked for several days, to collect the nutritional supplement packets for their dying family members.

They walked for several days. . . yeah, I did say that.

For the clients being evaluated, we measured their middle-upper-arm circumference, height and weight; determined their BMI and height/weight to age; examined them for anemia and edema.  All of these statistics are recorded and followed to determine whether their health is improving on the program.  As improvement is seen, they continue on the program and eventually, are released.  Otherwise, after several visits showing no improvement, they are referred to the hospital for further testing.

Here are some of the precious children, with whom I was so honored to work.

So, this little one on the baby scale. . .

SO adorable, but would NOT sit still for a moment.  This precious sweetie kept bouncing on the scale and we ended up having to weigh Momma with and without the baby to determine the baby’s weight.

It was a very busy 4 hours and time seemed to fly by.  We saw some very sick children and a few adults who have been so ill. . .it just takes your breath away. But, we also saw children who at one time were unresponsive, underweight, wasting.  And now, they are laughing, playing, hugging, smiling and thriving.  We saw 52 clients that day, in just 4 hours.  I am so thrilled to report we were able to release 17 from the program, because they had met their nutritional and growth goals!

One5 Foundation supports this nutritional clinic, along with Church of the Resurrection (COR) in Leawood KS.  It is so exciting to be part of the solution here in Malawi.  It has been so exciting to learn how COR has been involved here and to see the results of their gifts and their work over these past years.  I know several people who attend COR and am so happy for their continued support here in Malawi.

It’s an act of faith to write a check or drop a $20 bill in the offering plate at church, never really seeing it be spent. . .and still, quite another to hold these children in your arms and see the results of those gifts.  Thank you.  Every day. . I thank you.

While I was working in the clinic, Jon, Glenn and Mercy were interviewing construction and engineering firms. One5 Foundation will be building a hospital next to this nutritional clinic and they are forming their team to accomplish this.  They also were able to finalize the plans and make arrangements to submit the final plans to the city for approval.

But, then. . .that’s quite another story. . . .stay tuned.

That’s what the calendar says.  So, as you can imagine, December 5th was a very busy evening indeed.  Packing for a trip to another continent, another hemisphere, not knowing what is available and how expensive it might be, having medical supplies to consider, all made for an interesting night of guessing, calculating and predicting our future.  You can only take so many bags, filled with so many things and what if . . .

We had Christmas gifts to deliver, treats for the kids at the orphanage, donated toys for the kids at the Lakeshore Nazarene Church, 9 days worth of clothing changes, even more because we aren’t sure of the weather, the heat, the rainy season. Of course we had to include some of our creature comforts; Starbucks Pumpkin Spice VIA packets, packages of cheese and cracker snacks, nuts and granola bars.  What gets carried on in a back pack and what do you pack in a bag which might not arrive?

DH and I had each started laying out clothes earlier in the week.  I had asked him to also setup a table in our entryway as a staging area for all the suitcases.  We gathered “space” bags, consolidated what we could and repacked and un-boxed other items to allow us to take advantage of every inch of empty space in the bags. It was like a giant game of Tetris. . blocks dropping and fit together.

Finally, the last suitcase was squeezed and zipped shut.  The carry-on backpacks were zipped up and locked.  We were ready to go. . .

What had happened over that week of preparation was much like predicting the future.  Put this in the carry-on because a bag might get lost.  When we go through security, they’ll ask about this, so put it in an easy place to pull out for inspection. I’ll probably get hungry at this time, so let’s make sure there are snacks in this pocket.  We had lived an entire week in that night as we worked though the logic of each piece of clothing, each pair of shoes, each item added to the bag.

Don’t we follow this same process everyday?  We try to pack more and more into each day; work, fun, friends, food, exercise. . .we pack and repack, turning and twisting until everything fits into our week, like a giant Tetris puzzle. Once I’ve got it all calculated and zipped up tight, I feel the same feelings of accomplishment and exhaustion.  The trick is, to be able to enjoy the journey and not be so worn out from the prepping that you sleep through the whole trip! 

I had such a feeling of accomplishment the next morning as we awoke early, ready to go, bags sitting by the front door. We were able to run to our local Starbucks and enjoy our favorite breakfasts before starting our journey.  We headed to the airport, found our seats and before we knew it. . .we were on our way to JFK – London – Nairobi – Lilongwe.

Hang on tight. . .we’re heading to Africa!

Thanksgiving. . . .

I hope you all had a wonderful Thanksgiving Day.  We certainly did.  We had Nana and Pop in from CA.; Uncle E, Aunt L, B and D from Chicago; G from Lee’s Summit; M from Malawi via Grandview; Aunt L from Gardiner; Mom, E and J from Olathe; H from KU; s, J and M from KC; and my dear hubby and me.

We had so much food, we had to put it on another table in the adjoining room.  As we passed the side dishes. . .one after the other, then another. . .and yet, another. . it was fun to hear all the comments about how “good” it looks, how tasty this will be, etc.  My DH slaved away in the kitchen for hours and hours preparing for this meal.  E, Mom and Nana all worked pretty hard, as well, in preparing these tasty treats.  I am thankful for all they did to prepare the meal.

All that preparation, over the week prior to the holiday, was all gobbled up in a mere 20 minutes.

That evening, the newlyweds arrived; J & M.  It was also M’s birthday that day and Nana made sure she had a birthday cake and we all sang to her.  We cut the red velvet Happy Birthday cake and they were soon off to the next family gathering.

We played games, told stories, took photos, laughed, teased, ate some more, watched some football, compared gadgets and technology. . .you probably did the same.

There was a very special moment, on Friday. . .with everyone facing the aging process and disease striking several, we wanted to make sure to pray together as a family.  You just never know when this visit, will have been the last.  We stood in a circle, Pop asked my DH to pray.  It was a very emotional moment as he thought of what to say.  DH choked back tears and then it happened. . . .

I felt other hands joining the circle. . .you know, when you’re praying like that, and someone realizes they’re late and they run up and grab two hands, separate them and slip their own hand into yours.  Usually when that happens you take a quick peek to see who it is and giving them a “knowing nod.”  ”Hey there, glad you could join us.”

Uncle H, my Dad, Aunt P, Pap and his bride. . . .I felt many of them, of whom we had just been sharing memories, stories, pictures, laughter, love, step back into that circle, grab a hand, and give a little squeeze as “amen” was spoken.

At the conclusion of the prayer, Aunt L started to sing and we all joined in, “Blessed be the tie that binds, our hearts in one accord. . . .”  It was a sweet, poignant moment. . and as we sang together, those of our heavenly audience, slipped away quietly.  For a moment, heaven and earth were joined in the grasping of a hand.

And I am thankful. . .

Just breathe. . .

I once attended some group counseling sessions and was taught about our inner “Dragon.”  After much soul-searching and introspection, I learned my Dragon’s name:

“I-Don’t-Want-to-be-a-Disappointment.”

The theory of our dragon’s life is that, most of the time we’re all fine, rational, emotionally- tamed adults.  But, there are certain situations in life that will nudge our dragon from her sleep.  She’ll wake up slowly and just move around the cage a little. . .bumping in the night and stepping on things.  Then suddenly, something will be said or perceived and our dragon will bust right through that cage door, nostrils blazing and smelling of brimstone!

What in the world is she talking about??!!  What does this have to do with that other post about breathing the name of God??!!

Well, last week, some things were perceived to be a threat to my dragon and all weekend long, she was bellowing in my head.  She would wake me up at night with all sorts of “what ifs” and “what now?”. . .and last night as we went to bed, I cried and shared my concerns with my sweet husband and found that I was NOT breathing the name of God as I so want to do.   I was breathing the name of MY DRAGON!

How many times did I say, in just one conversation: “I don’t want to be a disappointment” or “I try so hard, are they disappointed in me?”  Not once did I speak the one name that can calm the beast inside me.

“YHWH”

My Yaweh, my Deliverer,  Jehovah El-Roi, my God Who Sees Me, forgive me for speaking another’s name in my distress.  Your name is the only one that will bring peace, shelter, safety, trust and security.  I will speak YOUR name only, no matter WHAT comes my way each day.

YHWH. . .breathing in, YHWH breathing out.

This month’s Real Simple magazine had an article written by Kate Braestrup, called, How to Say Grace (pg. 74).  I finished reading it and was so moved, that I immediately read the whole piece to my DH.  It’s as if we each suddenly had a light bulb flicker above our heads.

In this article, Rev. Braestrup talks about the name of God, as written in Hebrew: YHWH. 
To be able to pronounce this in English, we’ve since added some vowels, to be read as: Yahweh.  She thoughtfully presents the sounds of YHWH as the sound of a breath.  When we speak the name of God, it need not be in King James, booming, fist raised to the sky voice.  Rather, He is in our breath.  He IS our breath and life.  Our very first act is to breathe in, our very last to breathe out.

Genesis 7:15 And the Lord God formed man of the dust of the ground, and breathed into his nostrils.

Job 33:4 says, the Spirit of God hath made me, and the breath of the Almighty hath given me life.

John 20:22 And when he had said this, be breathed on them, and saith unto them, Receive ye the Holy Ghost.

And this all makes sense to me. . .

There have been times in my life during which there were no words available to pray. 

• There is no word in the English language to express the level of pain you go through during a divorce. Nothing can express the level of agony experienced when you have to tell your children that Mom and Dad are splitting up and break their hearts like that.
• I still have no word to explain the pain of losing a parent. I didn’t get to say good-bye.  I let my job dictate my schedule and I couldn’t go to him and be there during his surgery.
• There is no phrase to properly convey the feeling you have when a man, with no expression on his face and a sterile white coat looks across the room at you and says, “You’ll just have to wrap your head around the idea that you have cancer, and it’s aggressive and we’ve got to act quickly.”
• What do you say to God when your child is in a war zone and you know they’re not telling you everything. . .and you know they’re being shot at?

 How do you pray when there are no words?  You breathe. . . His name is on our breath.

If you’ve been following my Facebook account, you’ll also know that I’m trying to learn a new language.  In an effort to “immerse” myself, I’m trying to speak Chichewa as often as possible. . .even as I pray.  Again, not from pain, but from ignorance, there are MANY times I don’t have the right words.  And, once again, I find myself just breathing His name in each form I know, “Mulungu, Atate, Yesu, Yesu Christu. . .”  and I know He can put the rest of the words together for me as I see the faces of those I’m lifting to Him.

Then today, I got this on my Facebook account: On this day of your life, Barbara, we believe God wants you to know … that you are a human being, not a human doing. Take time to just be, to breathe slowly, to feel your body that is the temple of your soul. No activities, no worries, no buzzing.

The holiday season is upon us. . .we have family arriving on Saturday (I’m so excited!)  and food to prepare and rooms to prepare and things to get rid of and cleaning and laundry and work and Drs. appointments and holiday parties and choir practice and gym time and we’re getting ready to go to AFRICA and then its Christmas and B will come home and  C will be here and we’ll have food to prepare and rooms to prepare and cleaning and laundry and presents to buy and  trees to decorate and cookies to bake. . . .

Just breathe. . .

Ok, last year, I completely fell of the wagon and decided to walk. . .this year, I fell of the wagon, chased it down and jumped back on! Day 14-Advice for dealing with negative feedback in your community.

I’ve always wondered about people who watch something on TV, complain about it, on and on and on, yet tune in the following week for the never-ending saga. Whether it’s swearing, product placement, sexual innuendo or any other distasteful content, they gripe and talk and make noise, yet they still tune in. It reminds me of the “watch” parties which used to be held by some on the religious right. They would actually watch a program and count the swear words and then report it to their followers. If you don’t like swear words, the best thing you can do is either:

Hit the channel selector to try a new station

Turn the darn thing OFF and have a conversation with your family!

They make money by being watched, hence, if you stop watching, stop buying the products advertised on their show, they will be off the air in no time. EASY-PEASY!

So, also, in our online communities there are all sorts of people, all sorts of diseases represented, all sorts of “cures” and remedies and helpful advice. There are also all sorts of angry, bitter, hateful people and still others who are trying to sell you their miracle cure. How do I deal with these people? The same way I deal with the distasteful television show or horribly violent movie. . I turn it OFF.

I don’t know about you. . but, I am particularly aware of how short my life is. I really don’t have time to be getting my “panties in a bunch” over what this person said or that. I want my time spent on building relationships, encouraging others, leaving a happy mark on this earth where I used to stand.

See that button on your keyboard? Yep, that one, way up on the right-hand side, just above the cursor keys and below “insert.” What does that say? It’s a magical key. . .DELETE.

This latest political season was THE WORST! I unfriended and deleted more followers than I care to admit. Not because their views differed from mine, but I don’t need to be bullied into voting for your guy. Seriously, you posting some mean, hateful message about how stupid these people or those people are. . .I don’t need it and it really isn’t going to convince me you’re right, just rude.

I especially like the “sweet” ones.

“Oh Lord, I just don’t understand how these otherwise intelligent people just don’t see that this man is the anti-christ. . .help them Lord Jesus.”

UGH! Just UGH!

So, here’s my standard. Have whatever feelings, convictions, thoughts, and impressions you want to have. Feel free to share them, but if you are overly negative, if you disparage ANY group of people, if you have very much swearing in your post, I’m going to hide it, hide you or delete you altogether. My life is short, too short to fill my head, my heart and my newsfeed with negativity and bitterness.

Hey Health;

I am really happy we’ve learned to be friends.  I hope you feel the same change in our relationship, I’ve given you new priority in my life and spend much more time thinking about and entertaining you. I am sorry I neglected you for so long.  As is so often the case, I took you for granted and expected that you’d be there, waiting for me.

So, here we are, we’ve had a really rough couple of years; last year especially.  You introduced me to mortality then you seemed to abandon me. It was really very frightening.  I didn’t really like looking her in the eye. . .but, I stared her down and she turned away.  Whew!

I’m still living with Diabetes.  At first, I thought D was going to be the worst roommate EVER!  But, we’ve come to an understanding and now, D only gets rowdy in the evenings, and sometimes in the middle of the night D gets so low. . .but, I give D some sugar and all is well by morning.

Cancer didn’t move in.  We all knew that relationship wouldn’t last long.  I finally kicked ‘em to the curb. . .I haven’t heard anything in a year now and that’s just fine with me.

Again, thank you for coming back and being my constant companion.  I couldn’t accomplish the things I have planned without you.  I need you to stay strong, so I try to make sure you have everything you need.  Please let me know if I need to change my diet, exercise or anything else in order to keep you happy.  I’m willing to change anything, except, I won’t let you go again.

Much love, Babs

Ok, so traveling has certainly presented moments of frustration, educating the masses and LAUGHTER.  I may be traveling to Africa in a month, so I’ve already started making my lists.  I only be gone for a week, but because intercontinental communications are so rough, an 8hour time difference, and not having medical sources available to me, I feel like I need to pack my entire diabetes closet when I go.

But, I will only take:

• 3 bottles of insulin-for a week, I don’t even need one whole bottle.  But, what if one gets lost, broken or we get stuck somewhere, unable to make a quick connection?  Just to be safe, I’ll take 3 bottles.
• a bottle of long-acting insulin, in case of a pump failure.
• a box of insulin pump infusion sets.  Again, I would only need two, but what if I’m running from a hippo and accidently pull on the tubing?  What if I go to change a site and hit scar tissue and have to reinsert?  And again, what we if we get stuck there, unable to get home as expected?
• a box of insulin pump cartridge sets.  See above
• a package of AA lithium batteries, for my pump.
• my glucose meter
• 3 boxes (300) test strips
• 2 Continuous Glucose Monitor (CGM) Sensors.
• medical adhesive
• alcohol wipes
• syringes-in case of a pump failure
• glucose tablets
• glucagon kit (this is the injection someone would give me if I go low and am unconscious.
• my prescriptions-Tamoxiphen (oral chemo), Cozar (blood pressure-preventative to protect kidneys), Simvastatin (cholesteral-preventative to protect kidneys)
• I think I’ll also take a multi-vitamin, iron and fish oil, since I’m not sure how my diet will be while I’m there.
• Oh, and maybe my toothbrush and some clothes. . . .GEESH!

As you can see, traveling with diabetes isn’t as slick as without, but I’m grateful I have access to all these things, keeping me alive.  The humor of traveling usually happens at the airport.

*Steps up to x-ray machine*

“Hi, I need a pat-down, I have multiple medical devices and can’t go through any of these machines.”

*TSA motions to stand over here ->.*  “So, what kind of “medical devices” do you have on your person?  Can you show me?”

“Sure, this is an insulin pump, this tubing is connected to me, here ->” *Points to infusion site.*
“And this is a glucose monitor, it is wireless, but is reading from this sensor, here -> *Points to sensor*

TSA agent looks crossways and says, “Dang, girl, you ARE bionic, ain’t you?”  *Pat, pat, pat. . .rub, touch, poke. . .*
“Please touch your pump and hold out your hands.”  *swabs hands and pump cap and takes it to the magic machine.*

“BEEP”

“Ok, thank you. . .you have a nice flight, Ma’am.”

Well, that’s how it’s supposed to go.
While I had my tissue expanders in my chest, one agent had to do a more thorough pat-down around that area than usual.
“Wow, yeah, that feels unusual.  I’ve never had someone with breasts that hard before.  I need to make sure you don’t have something taped or wrapped around your chest.  Are those really inside you or something in your bra?”

“Yes, they are really inside me. . .try rolling over in the middle of the night.  It’s like sleeping with softballs in your shirt!”

Then there was the time, just after my mastectomy.  I had dutifully rattled off all my devices and locations of said pieces.  Then I told her I’d also recently had a mastectomy and had no breasts.

“Oh ma’am, you don’t have to tell us that.  You don’t have to report something so personal.”

Oh, but I do. . .I’ve been through this pat-down before and there’s the point where you place your hands, palms down, index fingers and thumbs at my waist and quickly thrust upward.  Yeah, she almost took my nose off because there were no breasts to stop her upward motion.

TSA: “Oh, yes ma’am, I can see why you told me that, now.”

I’ve come to terms with my lot in life.  I know I need extra attention at the security check-point and we always add 20-30 minutes to our arrival time for just that reason.  The TSA agents have always been so nice, and even helpful in telling me ways to work through this process with less commotion.  (Can’t say the same for the “Rent-A-Cop” agents at MCI)  But, still I long for a day when I can just walk through the metal detector, grab my back and go.  Some day. . . .

Happy travels everyone!