I don’t curse (much). Even after having coached little league football, dealing with groups of mostly boys ages 7-12 for over thirty years, I have let slip very few profane and unsavory terms. However, and with that being said . . . In this situation . . . Under these circumstances . . . The use of an occasional four letter word can be understood, hell . . . Warranted! I’m grieving for goodness sake. At least that’s my story and I’m sticking with it.
So this week’s blog entry is one I use to tell a more behind the scenes story of Kandi’s illness. It’s my behind the scenes perspective of how we(she) faced her own mortality and her will to fight and win because she had “so much more to say and so much more to do.”
Thank you Lord for the strength and the courage to put this one out. Its probably one of the hardest blog posts I’ve written thus far. Partly because I couldn’t see what I was typing because of the tears. The memories are fresh. The wounds (to my heart and soul) are still bleeding and open. Grief is still running point in my life and dictates where and when I should go. But Scripture says, “blessed are those who mourn. For they shall be comforted.” Writing helps me to comfort me and hopefully those who read my blogs.
If my little four letter word in this blog title upsets or offends some, I truly apologize. Just keep praying for me. Be patient with me. I’m still a work in progress. I’m still a work in process.
ACUTE ERYTHROID LEUKEMIA. That’s what it was. When I first googled it, after hearing the diagnosis, my heart dropped. I didn’t say anything. Of course Dr. Google is a blessing and a curse. I quickly texted my pastor’s wife, Kristin, who is an oncology nurse. I could tell she was trying to be gentle with me. I could read between the lines, though. What I forgot to mention to her, is that I recently realized just how much I didn’t trust oncologists. My history with cancer has been very negative. Cancer doctors always come in so cheerful and upbeat when they’re talking with their patients. All the while, they know what the statistics and numbers tell them about the real prognosis. I’ve learned to see through all of the BS. It’s not that I lost faith. Its that my faith has taught me that God sees things a whole lot differently than I do. What I think may clearly be the best outcome, God may say “No. That’s not what I want.” And I’m okay with that. I may not like it. It may be painful, but I’m okay with it.
So when I read one year or less, I knew I wanted to make the best of the time we had.
The Confirmation
We thought his name was Dr. Clark. He said call him Dr. Clark. His full government name was actually Dr. Clark Robinson. However, he didn’t like to be called Dr. Robinson. He was a Fellow just doing a rotation on the Leukemia team at MD Anderson. He spent a lot of time with us, mainly interviewing Kandi. Even after the main doctors would leave the room, he would hang back and just sit and talk to Kandi and I, answering any questions we may have and trying to gather as much family history that he could. He talked to Kandi about her family and what their health history contained. He listened to Kandi and filled in as much background information as he possibly could in her medical records. Just anything that could give the doctors a lead. So following the disclosure of the diagnosis, Kandi and I began to pelt him with questions like, what would treatments look like? What are the side effects? Would she lose her hair? Would it grow back? And finally THE question. What’s the prognosis? He responded with his own question. Just how much did we really want to know? We said, as we looked at one another, we want to know the honest truth! With that, he initially answered very slowly “its very rare and very aggressive”. He then said that’s all he knew at the time. However, he would go home that night and do more research.
The next day, Dr. Clark returned with the the Leukemia doctors as they performed their daily rounds. It was a Sunday. Kandi was still recovering from sciatica that happened when the nurse practitioner hit her sciatic nerve while doing a bone biopsy. She was moving, but moving slowly and with a walker. After the oncology team left out, Dr. Clark remained. He said that he actually did do some more research the night before on A.E.L. He was brutally honest with us. He did not stutter, but plainly explained what I already had read. Kandi’s prognosis at best was possibly one year. On average though, just a few months. Kandi and I held hands and cried like babies. We were almost inconsolable. Denial was strong in that moment. There was no possible way this could be true. I was both visibly upset and very appreciative of Dr. Clark for being brutally honest with us. Dr. Clark confirmed what Dr. Google had said.
In that moment, I saw Kandi’s resolve kick into high gear. She wasn’t going to quit or give up that easily. She was going to fight. Just like anything else she ever did, she was going to give it her all. She wasn’t going to go easy into that good night. After the tears, we went into action mode. Her first decision was she didn’t want her diagnosis to be shared to everyone. We quickly assembled what we called our Prayer Warriors Group. An idea I got from my friend Erica when her husband was diagnosed with cancer. Only these people would know the real story. We agreed not to tell our kids. We also agreed to set up an appointment to meet with a counselor/ therapist that we both had seen on separate occasions. She is a Christian counselor and someone we trusted.
So, our actions had been planned. Now to put our plans into action. However, before we could do that, we had to put on our game faces because our Life Group from church was on their way to the hospital with pizza for an offsite Life Group session. Even though they were some of our closest friends, we were not ready to let them in on this new secret. That was one of the hardest gatherings I had ever been in. I just knew that at any moment my face was going to crack. That I would completely fall apart in front of everyone. I don’t know how I held it together. As soon as they all left, I looked at Kandi, and barely could say “well that was har . . .” and broke down, mid sentence, and cried like a baby. I cried so hard, Kandi had to console ME. It wasn’t the first time I ugly cried. There were a few times before, but she had never seen it. There were times when I would be leaving the hospital and as soon as I would walk out of her room and close the door behind me, I would have a complete breakdown. I would cry so hard. At times, I would hold it in until I got to my car. Then I would cry hard and loud. I would cry so hard that I couldn’t see. So hard, that my fingers would tingle and I would break out in a sweat. I would have to work to calm myself down because I couldn’t see straight and I had to drive home. Through this whole time, I have probably shed more tears than in my whole life combined.
Acute Erythroid Leukemia
Acute erythrocyte leukemia (AEL) is an extremely rare form of acute myeloid leukemia (less than 1% of AML cases[1]) which is characterized by neoplastic proliferation of erythroid cells with features of maturation arrest (increased erythroblasts) and high prevalence of biallelic TP53 alterations. It is defined as type “M6” under the FAB classification.
The most common symptoms of AEL are related to pancytopenia (a shortage of all types of blood cells), including fatigue, infections, and mucocutaneous bleeding.[2] Almost half of people with AEL exhibit weight loss, fever and night sweats at the time of diagnosis.[2] Almost all people with AEL are anemic, and 77% have a hemoglobin level under 10.0 g/dl.[2] Signs of thrombocytopenia are found in about half of people with AEL.
The causes of AEL are unknown.[3] Prior to a 2008 reclassification by the World Health Organization, cases that evolved from myelodysplastic syndromes, myeloproliferative neoplasms, chemotherapy for other cancers or exposure to toxins were defined as secondary AEL.[1] These cases are now likely to instead be classified as acute myeloid leukemia with myelodysplasia-related changes or therapy-related AML.[1] +
Information on prognosis is limited by the rarity of the condition. Prognosis appears to be no different from AML in general, taking into account other risk factors.[9][10] Acute erythroid leukemia (M6) has a relatively poor prognosis. A 2010 study of 124 patients found a median overall survival of 8 months.[10] A 2009 study on 91 patients found a median overall survival for erythroleukemia patients of 36 weeks, with no statistically significant difference to other AML patients.
The Fight
And so began the fight! We finally knew who/what the enemy was. We knew the odds. However, we stood boldly. She stood boldly in front of the oncoming freight train with all the resolve she had to take on this formidable enemy. As she regained her mobility from the bout of sciatica, she began to move and get around better. The doctors prescribed Physical Therapy, but for her, therapy was to connect her little karaoke speaker and microphone that our friends the Wests gave her to her walker and make her laps on the unit, belting out the songs from whatever episode of Bammel worship she was watching on YouTube at the time. She quickly garnered the nickname, “the singing patient”. The nurses, doctors and other patients loved to hear her sing as she went through the halls. One thing about Kandi. She was never shy. Especially when it came to singing, and especially when it came to singing about her God and his goodness. Her singing inspired patients and staff alike. I think it had more to do with her powerful God given spirit more than the songs she would sing. All of her life, Kandi was a force of nature, a force to be reckoned with. This enemy did not understand who it picked a fight with. This war would rage.
Eventually, Kandi moved away from the walker. Her strength had returned. She was back to walking unassisted and unsupervised. The doctors then began to encourage her to get out and see the sights. One Saturday we spent the day outside. We even went to dinner at the restaurant in the Rotary House across the street from the hospital. This was the hotel where patient family members stay when they come from afar.
Eating at the restaurant that day, was the first time in over a month that she actually ate with real silverware and on a real plate. Man! First world problems.
The Butterfly and the Robin
During our day out, some friends from church stopped by to see us. Derrick, our worship leader and his wife Amy, and their kids Jordan and Bailee have become so special to us. We truly enjoyed spending time with them whenever we could. While Derrick and Amy were visiting, we were sitting outside. During the course of the visit a butterfly began to hover and dance very near to Kandi. Kandi looked up and saw it and stated “that butterfly is so beautiful and its here for me.” It was really hard for me to hold in what I was thinking at the time. My thoughts alluded to a superstition amongst some healthcare workers I know who believe that certain birds, like Red Robins symbolize death. So at least it was a butterfly and not a Robin.
Later on that evening, after Derrick and Amy had left, we were still outside. Then what approached next? You guessed it! A Red Robin! Kandi saw the bird and got very excited. Her comment was “ooh look! A Red Robin! And its here for me!” I closed my eyes real tight to hold back the tears that wanted to come in that moment. I didn’t want to ruin this moment for her by telling her about some silly superstition. Afterall, I had seen many a Red Robin before, but no one died – at least no one I knew.
The Counter Attack
For a few weeks, Kandi’s strength grew. It appeared that she was getting better. She was walking around being independent. Doing her own self care. Physical therapy would come see her maybe once a week just to check on her. She even had a yoga session with one of the ladies from church. Visitors came and went. She had family, friends, coworkers present and past. Church friends also came through. There was a steady flow of traffic to and from her room.
She even stated she felt better on most days. However, her platelets hovered at just barely two even though she was receiving daily platelet and blood transfusions. Sometimes there would be two a day. They began giving her what was called HLT platelet transfusions. These were more specialized types of platelets that were specifically matched from donor to recipient. The first time she received these, her platelet levels jumped to an all time high of seven. Normal is somewhere between 300 and 500. We celebrated. However, our celebration was short lived as her platelets returned to her “normal” of two.
The End
The end came about as fast as the beginning. We were preparing to go home. Kandi’s platelets remained low. However, the thinking was that she could come into the MD Anderson outpatient clinic for her transfusions three times a week. As she awaited a possible STEM Cell transplant. We made preparations at the house the week before her planned discharge date, by having it professionally cleaned. Some church members all chipped in and one sister, Katherine hired her housekeeper to get the job done.
The one main problem Kandi was having was she was still spiking a fever and the doctors could never understand why. They ran all kinds of tests looking for infections and none could be found.
On Saturday, May 19th Kandi and I Door Dashed some food. We decided to go to the patient/family lounge to eat. When we finished eating, Kandi decided to search up YouTube videos of how to do the latest line dance craze called “Boots on the Ground. I recorded a small clip of her trying to learn the dance. One thing about Kandi was that she rarely got embarrassed. If she needed to learn how to do a dance or fix an appliance she had no qualms about asking a person for assistance. I, on the other hand, in true man fashion will go down with the ship.
Two days after attempting to learn this new dance, she became very lethargic and her speech was slurred. It was on a Monday morning. I attempted to FaceTime her while on my way to work as I had done so many times before. She could barely pick up her phone or hold herself up to be in the camera. I asked her if she felt alright and she said she felt fine, just a little sleepy. I grew very concerned. This was the week she was supposed to come home if they could keep her fevers down.
As that day progressed, it only got worse. I had tried several times to call her. After several attempts to call or text her throughout the day, she finally answered in the afternoon. She sounded worse by now. Very drowsy, lethargic and speech more slurred. I went straight to the hospital after work and she was in bed asleep, and that’s all she did was sleep. She would get up periodically to go to the bathroom, but then she would go right back to sleep afterwards.
As the days progressed, so did her decline in function. The doctors seemed to be stumped. They didn’t know what was going on. During this time, we were informed that the first round of chemo was not effective at all. And as her physical condition had declined so quickly, a second, more powerful round was not an option.
It was during this time when I began to inform others of the reality of the situation. At first, it was the kids. Once they were informed, the doctors wanted us to make some final decisions. As we worked through all of this and as her condition began to rapidly decline I began to inform others, family and close friends. Days quickly turned into hours as her cognition and function rapidly declined. My son and his fiance decided they wanted to get married. So we hurriedly planned and performed a small private wedding ceremony in her hospital room. The following day, after the wedding ceremony, I could tell her time was drawing near. She slept and would barely open her eyes when called. However, she was very restless in bed. It was really hard to watch this part of her transition. A few visitors came by. There was a steady stream of calls, messages through social media and texts also.
We had already made arrangements for hospice and planned to take her home for her final hours. However, this was not to be. As I was leaving our house on Friday morning, heading to the hospital, her nurse called me to let me know that her condition had taken a serious downward turn. Her nurse advised me that I needed to get our family to the hospital ASAP.
As I drove, I made calls and had others make calls. Before long, the word spread like wildfire. There were friends and family coming from all over to visit Kandi. Depending on who was at the bedside, there was singing and praying throughout the day.
Kandi was nonresponsive. Her breathing was fast and somewhat irregular. We all knew it would be just a matter of time. Finally, as the day came to an end, people began to leave, with a promise of returning the next day. I, however, knew there would be no tomorrow. All that was left in the room were two members of Kandi’s former accapella female quartet, The Lively Stones, my son and I.
Its so hard to sit and watch a person take their last breath. The breathing pattern slows down. It becomes more agonal. In other words, deep breaths with larger spaces between them. This was so hard to watch. The memory is burned in my mind forever.
It was Saturday, June 7th around 1:15 in the morning when I made a final Facebook post that read, “She’s resting now.” And with that, Kandi LaShae Poole was gone.
The Funeral
Kandi’s Life Celebration was one for the record books. It lasted almost four hours and there were probably close to one thousand people in attendance. If Kandi was able to look down from heaven to see it, she was probably awestruck at the outpouring of love that was shown on that day. It was so much music that demonstrated all the different aspects of music in Kandi’s life. So many of her students, colleagues and coworkers – past and present were there. This only gave a small indication of the major impact that she played in everyone’s life.
The lies
Following the funeral, when life began to slow down some and my brain had time to catch up and grief to settle in, there were thoughts (lies) that ran through my brain. Thoughts like:
I didn’t deserve her. So God took her from me. I took her for granted.
I didn’t do my job to protect her.
My world has ended
For a brief moment, this caused me a little bit of distress. I then realized that I did deserve her. When it comes to my job as father/husband, I was one of the best protector/providers there has ever been! And lastly, but definitely not leastly, my world has not ended. With God’s help, I plan to move forward.
The Truth is:
Grief is a strange bedfellow. It’s both hurting and healthy. We have to walk through this valley of grief, but we don’t have to do it alone. With friends/family or just that eternal presence of God’s Spirit that sits lightly on our shoulders like a dove as it did Jesus following his baptism.
The truth is, God is not vengeful or vindictive and
God makes no mistakes
Even though we grieve, we hurt, God comforts.
The Honor
There was (is) a distinct honor in loving Kandi Poole and having been her husband for twenty nine and a half years. I was blessed to have had her in my life. She molded me. She shaped me. Helped me become the man that I am today. It was an honor to care for her in her final days and hours. I would do it all over again if I had to.
As a family, we feel the overwhelming void that her death has left in this physical world. We are left wondering how do we relate to each other in some ways, because in many ways she was the bridge, the go between. We are left to forge new pathways to each other, and this can be a challenge at times.
Life is forever different now. And we not only grieve the loss of Kandi/Mom/Aunt Kandi, but we also grieve the loss of that life, that world. Its gone now. And in ways we struggle, we stumble to find a new way. Its hard, but doable.
A New Path through Grief
We find ourselves “plowing a new row” as one from the country would say. Sometimes, the ground is hard and its slow going because the plow has trouble breaking through the well packed ground of grief. Its also a way we really don’t want to go. We didn’t choose this path. This path chose us. However, every morning we have to wake up and choose with intention to put our hands to the the plow and cut through this soil of grief and sorrow.
Its the valley of the shadow of death. We can’t afford to fear. God has promised not to leave us alone even though at the darkest point when the darkest shadows rise before us, we feel as though we are all alone. We wonder what’s the point of going forward. We have to lean on each other as a family and hold God’s hand and allow him to guide us through the darkness. Life will go on. We will find our way. The pain will relent in the days and years to come, but the void will always remain. Our hearts will always ache, but we will go on.
Quick note: This picture of a Red Robin is one that I found on Kandi’s phone. It was one that she took during her time at MD Anderson.