Bad Hair Day…

Here’s the history on how I lost my hair. It wasn’t remotely gradual and we didn’t have a whimsical, symbolic “shave your head” party like I read about other cancer patients doing. First of all, as you know, I have (had) a LOT of hair. I always assumed I would be 90 yrs old and still shaving my legs, waxing, and braiding my full head of hair. Well, the week I was in ICU,  my giant head of hair morphed into one giant dreadlock. When I awoke and finally addressed what to do with the rat’s nest on my head, it was already too late. We even poured an entire bottle of conditioner on it and let it sit all night to see if we could possible comb through it. When my dear friend, Tracy, came to help “cut” my hair the next day, it was clear that combing was not an option. We went straight to shaving my head bald.

So, some comments on being bald: Emma thinks my head is “cute” and is not freaked out at all by my baldness. Blake encourages a variety of wigs just for, well, variety. 🙂 I have to admit that I don’t miss doing my hair: at all. It cuts out about 40 minutes of minutia, although putting my eyelashes on takes me about that long since I glue my eyes shut a few times before I get it right, so it’s sort of a wash.

I used to have “bad hair days”. Now, I have “hair” or “no hair” days. Yesterday I chose a “no hair” day because I wanted to test my observations so I could write this entry. Here’s is what has been confirmed: People are nicer to me when I don’t wear hair. Yep. I started noticing this one day when a store clerk was being especially helpful and pleasant ( sadly, I became suspicious). Then it hit me-I had on a scarf and no hair. Instead of the casual checkout and an obligatory, “have a good day” as I walk away, people stop short of grabbing my face in their hands, looking me in the eye, and saying “YOU have  GREAT day” ( possibly wiping a tear from their eye). I am not complaining at all, mind you.  It’s lovely to be treated this way. But I am sure you are way ahead of me on this: What would our world be like if we treated everyone like they have cancer? Like they are “sick” rather than just annoying?  What if we gave people the benefit of the doubt when they are cranky or short-tempered or down right mean? A principal of faith and one that has been reiterated to me in recovery is one that helps me gain a better approach to people around me: I realized that people…” were perhaps SPIRITUALLY SICK. Though we didn’t like their symptoms and the way these disturbed us, they, LIKE OURSELVES, were sick too. We asked God to help us show them the same tolerance, pity, and patience we would cheerfully grant a sick friend. When a person offended we said to ourselves, ‘This is a  sick person. How can I be helpful to them? God save me from being angry. Thy will be done.'”

Reminding myself of this causes me to consider that even if someone is not walking around bald, with their illness advertised for all to see, that most people are suffering from many other ailments and are acting the way they do as a result of those. We can’t SEE the fear in his heart, we just think things like, “what’s that jerks’ problem!?”. We don’t SEE the emotional anguish, we just think, “why is she always so bitter and negative?”. We can’t SEE the deep hurt and betrayal, we just think, “boy, he’s a drag to be around. Such a downer.” We don’t SEE the insecurity that haunts her, we just think, “well, doesn’t she think she’s ALL THAT!?”.

We have all got our demons. Our wounds. Our baggage. We are all SPIRITUALLY SICK. When I remember this, God softens my heart and fills it with compassion…replacing judgment. Helping me see others with HIS grace and forgiveness and mercy. Treating them like they had “no hair”.

Good News..I feel sick today!

Yes, you read that right. I had a phenomenal “outing” with my mom yesterday. We went to  Barnes Hospital in St. Louis and visited my AML friend Julie who has just begun her Bone Marrow transplant process AND Emma’s friend, Amarissa. Amarissa also happens to be the daughter of one of my friends, Debbie,  who I have known since Before the girls were born! Amarissa has scoliosis and had spinal surgery on Wed. She is doing great ( more on that in a moment…)! So, after we visited with friends, we ate outside at the Cheesecake Factory, shopped at Trader Joes and went to the kids Track Meet in Auburn. I don’t feel very good today; headache and sore throat. I went for bloodwork and was expecting them the tell me I need blood or maybe even admit me to the hospital. As it turns out-the nurse came out and told me my counts are the best they have been since I  got Leukemia! I told her I felt like crap and she said, “that’s great! It means your white blood cells are doing their job!” I learned this in the hospital but had forgotten that white blood cells working right=feeling crappy. White blood cells effected by Leukemia=feeling great but you could die. SO-I feel like CRAP and I am so excited!!

Now-Back to Amarissa. I had about an hour-long discussion on BRAVERY and what that means with a friend the other day. I said things like, “having cancer doesn’t make someone brave. That’s not a choice. HOW they LIVE with Cancer is what makes them brave.” There were many other deeper, more intellectual ideas thrown in from my very smart friend Debbie Parker, but for my purposes today I am going to stop there and let Amarissa give you the best example of BRAVERY I have ever seen. She is laying flat on her back from Spinal Surgery singing her heart out ( hand motions and all): “I WANNA DO LIFE BIG.” Me too, girlfriend. Thanks for helping everyone who reads this live bigger today than they did yesterday. (Apparently i can’t put the video on my blog so I am going to try to post it on facebook….please go there and watch!!)

BRAVE: Courageous, dauntless, perhaps a little bit daring, a person who is brave faces dangerous or difficult situations with courage.

guard your heart…

When I am Neutropenic, it means I have no immune system working to fight off harmful bacteria. I look fairly normal, so it is 100% my job to inform those I come in contact with that they need to wash their hands and probably not hug or kiss me at that time. It is still bothering me that last week I shook hands with a perfect stranger, while I was neutropenic,  without giving them any heads up about my condition. WHY? Because I didn’t want them to feel bad or offend them! WHAT IS WRONG WITH ME? I could literally catch something that would at the very least infect me and at the worst, kill me. But I ignored what I knew was best for me because of what someone else might think or how they might react. Messed up.

Now, you know I  am going to tell you more thoughts on this. I read several books everyday and pray regularly so that I can become peaceful, happy and free. I go to recovery meetings and invite others to go with me. I go to church to grow and learn and serve. All these “activities” and efforts are disciplines that I have to have in order to become the kind of person God intends for ME to be. SERENITY: the PEACE that passes understanding ( that doesn’t make sense) is something I desire to have dominate my Spirit above all things. YET, as hard as I work at partnering with God in this, ( I read this in some AA/Alanon literature that I can’t seem to locate) “sometimes I pass my serenity over to someone as casually as I would pass them the salt”. Without consideration for what’s best for me, my heart, my family, my spirit, my recovery. Just like that, I am a hot mess of anxious thoughts and worry. Proverbs 4:23 says, “ABOVE ALL, GUARD YOUR HEART.” It is your responsibility to not “shake that hand” if you know it could infect or kill you. Other’s will often push back or even ridicule or manipulate you into doing something you know is not good for your soul. But when you consider the risks involved, offending or disappointing someone might be the least of your problems.

I am proud to say that I learned my lesson. I had to sit for an hour at the pharmacy immediately after I was told I was Neutropenic. There were some complications with insurance ( imagine that) and the Head Pharmacist handed me the phone she had just been talking on and said they needed to talk to me. I froze: I would have to touch that phone AND put my mouth right where hers had been! I am happy to report that I took the risk of offending her, I guarded my “heart” and body, and did what was best for me; I asked for an anti-bacterial wipe to clean off the phone before I touched it! She was, of course, understanding, and helped me out.

Above all, guard your heart. It will help you but also those around you when you are healthy, sane, peaceful, and free.

power of suggestion?

so, today I was NOT neutropenic! That means that I could go in public and visit people away from my home! So after i had bloodwork done, despite the fact that my Platelets were tanked, I went straight upstairs to visit my friend Lanny’s wife who works at  the Simmon’s cancer Institute. Lanny also has AML and came to visit me often when I was in the hospital the first time. Also, as a result of Lanny reaching out to me, I went over to the 2nd floor oncology and visited with a man who came in with AML while i was in the hospital last. Blake and I figured out that i have been in the hospital 47 out of 60 days and that this last 2 weeks will be the longest time i have been home consecutively.

imageAnyway- i started writing on a much more inspiring topic while I was getting Platelets today at 1. This ended up taking until 5:30 even though it was supposed to be done in about an hr. The main reason was because I broke out in hives ! I had an allergic reaction due to the fact that the nurse kept asking me if i was itchy or had hives. Eventually I think the power of suggestion caused me to get them! 🙂 As a result they gave me IV benadryl, atovan and steroids to make it go away before i could go home. My great topic degenerated in to a fog of weird and blurry words and thoughts. Then, I exited because it wasn’t making sense and didn’t save it so NOW  it will have to wait til tomorrow because I am too sleepy and  shallow to think tonight. I am home and rash free so I am grateful. (emma inserted the cute kitty picture.)

Shallow Hal

I am having a hard time sleeping lately. Last night I was awake from 12-4 am. The other night Blake was sleeping in Bennett’s room ( due to my Neutropenic state…germs) so when i couldn’t sleep I turned on the TV. Shallow Hal was on. It’s a pretty good story-line about a man who gets hypnotized into seeing other people’s true inner beauty in their outward appearance. He ends up dating a woman who is extremely obese but he sees her as gorgeous and thin (she is played by Gweneth Paltrow!) because her soul is so kind. At one point he meets a woman his friend is going on a date with who is scrawny,  very old and disheveled and smoking like a chimney. When he leaves the car and the woman is alone with Gweneth, we see that Gweneth is a robust woman and the other woman is actually about 20 and sexy, but her  soul reveals her true inner beauty by making her, well, ugly, outwardly.

OK. So…it was really late so here is where my brain went with this. I have a lot of ideas about observations I have regarding many things in my life, now and previously. Some of these ideas have been rolling around in my head for YEARS but I never put them down on “paper” because I convinced myself it would be torturous for others to read them because I am not good with words. I use words like  LIKE, and my descriptive repoitoire consists of an overflow of words like SOOO MUCH, VERY, and REALLY. ( i.e. Thank you sooo much, it’s very confusing and really REALLY cold). While I was watching Shallow Hal, it all became clear why I have heard comments about my blog like ( see!?) “beautifully written” and “you are so good with words”. It’s because you have all been hypnotized by Leukemia! It’s the ultimate cancer pass….sounding much wiser and smarter than I really am. It makes perfect sense now.

Honestly, I don’t understand why anyone would read this blog more than one time, but for now I will keep writing because it helps me clear my head and I have heard from a few people that it helps them occasionally as well. The more sleep I lose the more topics I come up with. I have  long que but try to ask God each day what it is HE wants me to share. So far, He keeps giving me NEW ideas and my list keeps backing up. So, I guess I’ll keep writing until He says stop. I ultimately know that God can use anyone’s words, intelligent or not, to let people know He is FOR them. I am FOR you too which is why I hope you return to read another day. Lord knows it’s not due to my, um, really-very good writing skills.

Love you “SOOOO MUCH” H


This is one of DOZENS he caught, and a very tiny one at that. He has spotted a PILE of baby black rat snakes, knocked a half a dozen giant black rat snakes out of a tree while standing in the water underneath it, and we even owned a ball python named Bobby for 12 years.

looking for lizards…

Ever since my son Berkeley was little ( he is now 18) he has been infatuated with reptiles, and, at some phases of his life, fairly obsessed with catching them. He has captured more snakes than any responsible mother would allow (while I watched). I think he thought he was the “Crocodile Hunter” from the TV show (who eventually died from being stung by a…Stingray. Go figure). One time,  he caught a snake while at the park with grandma. She made him take it out of the van and he put it underneath the van for safe keeping, in order to catch more snakes. When he came back, it was gone. Later that night they woke to grandma screaming. The snake had crawled into her purse and surprised her when she went to get something out of it. (It just occurred to me that we never interrogated Berkeley to see if HE had possibly put it in there.)  Anyway-Berkeley would be on the look out for snakes and lizards everywhere we went. And he found them, in places you didn’t even know they lurked ( some of you are hyperventilating just thinking about it…). Even when he went to Israel with Blake at age 7 he caught snakes and lizards. WHY did he spot reptiles when no one else was aware of them? BECAUSE HE WAS ALWAYS LOOKING FOR THEM. Not to frighten some of you, but they are all around you, you just aren’t looking.

Last week I was reminded of this obsession of Berkeley’s as I talked with a friend about noticing opportunities for kindness or conversations about faith, recovery, Hope. We either notice these opportunities BECAUSE WE ARE LOOKING for them or we keep moving along in a state of unawareness about the people and needs around us. Or maybe God is trying to answer your prayers for a friend, or give you an encouraging word or touching moment to let you know he “hears” you. We often just move through our day as if it’s just another day. That we don’t live in some sort of spiritual realm where small miracles can happen everyday IF WE ARE LOOKING FOR THEM. Spot a snake or lizard today.  Or catch one, if you dare.

I like my mom…

I figure we all need a break from yesterday’s entry. So, a simple, direct statement. “I LIKE my mom.” Some of you know and like her too. She has been with me since my diagnosis, staying more days here than at her own house. I suspect she is just pacing the floor, waiting to come back when she isn’t here (maybe that’s wishful thinking…). But we have a great time together. We watch movies, eat junk food and go for walks and shop when I can go out in public. I enjoy having her around. She waits on me hand and foot ( though i didn’t even have to use the “cancer card” on that one. she has always done that). She cleans and cooks until i tell her to sit down and take a break. She is selfless and doting and my siblings, kids, Blake and my dad all believe she’s a saint.

You may wonder why I am not saying “i LOVE my mom.”  Well, because there are frankly a lot of people that we LOVE that we don’t really LIKE.  It’s an extra bonus if you LIKE your family. Many of you might think that having your mom or family around non-stop, even when you have a life-threatening disease, sounds harder and more stressful than doing it on your own. That’s pretty common. But i really LIKE my mom, and here is some other GOOD NEWS a very wise pastor said in a sermon ( I LIKE him too…a LOT 🙂 )….”God doesn’t just LOVE you. He also LIKES you.”  It’s easy to believe God loves us, because that’s His Job. His nature. He really doesn’t have a choice, does he? But it take’s it to a whole other level if you can believe he LIKES you. Enjoys you. He wants to hang out and watch movies, eat junk food and go for walks and shop with you. That’s a big shift in my head and heart if I can remind myself of that. I hope it is for you too.

BTW-thank you mommy.  I like you very much. 🙂


I “came to” in ICU on March 1st after being semi-unconscious and intubated for about a week. I remember it very distinctly, though my perception of reality was most likely not very accurate. I didn’t remember going to ICU or WHY I was in there. I didn’t see anyone in the room that I recognized. I watched silently as 3 nurses with masks on talked quietly and intensely to each other. Every once in awhile they would come and roll me to one side or the other and then type furiously on the computer. After what seemed like an entire day, It dawned on me that if no one I knew could come in the room for 12 hours, that these women must be trying to save my life. I must be dying. Eventually, my parents came in and, since I couldn’t speak, i began writing down questions: where was everyone and why had they all been gone so long? They assured me that they had all been there 24-7 for the whole week and that I had only woken up an hour before they arrived. It was about 8 am.  I had only been in the room without my family for an hour, yet it felt like ALL DAY.  When you are suffering, time crawls by. I have been on both ends and so have most people. Most of my life has been spent rushing around from month to month thinking, “it’s January/February/March already? Where did the time go?”  In the hospital things went very slow because I was in pain or scared or just plain waiting to find out if I was going to respond well to chemo. I think about how often I have run through life ( usually whining about my busy schedule) self-focused and frenzied and “meaning” to call or send a card to a friend who is hurting or sick or addicted or depressed or dying. Now, Before you start feeling guilty for not calling or sending a card to ME even though you have been “meaning” to, please stop. This isn’t about getting you to pay attention to me. It’s an observation I had about how TIME FLIES WHEN YOU’RE HAVING FUN ( and by FUN, I mean life without debilitating physical or emotional pain or denial thereof) and DOES’T FLY so much when you aren’t. Haven’t we all had a time, or times, when one minute felt like an hour; one day felt like a month; a year that felt like a lifetime? It’s a reminder to me that even MY situation with Leukemia is not as difficult, painful, sad, or complicated  as someone else’s life might be at the same time. So, please don’t call or send anything to me as a result of this observation. Again, this is not about ME…BUT, please ask God WHO it is that you have been “meaning” to contact and then do it. While we all have legitimate reasons that we have been absent for too long, remember that waiting one more day for you doesn’t feel the same for them. Swallow your pride and get over the embarrassment of showing up late. Do what you know is right and leave the rest to God. They may tell you to take a flying leap. That’s not your business. Just do it because it’s the selfless, other-focused thing to do and that’s what Jesus did everyday. He does that for you and tells us to “do as he has done.” I have a few people to get in touch with so I need to go now. Love to you all. Let’s start some sort of REVOLUTION in Illinois, Arkansas, California, Canada, Indiana, Colorado, Nevada, Missouri, Kansas, New York and Oregon ( those are just the few places where I know some of you live who might be reading this…) I promise not to be so bossy tomorrow. 🙂

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