The breakdown. February, 2021

It’s a new year. The old one didn’t suit me too well. If I could, I would throw the whole thing in the garbage. Or even better, the wood chipper. Maybe I would hold on to a few good things, like the success of my bone marrow transplant over the summer, or getting the kitty of my dreams (Mike, I know I owe you, like, forever for that one.) But one of the most difficult parts of 2020 has been dealing with my own hardened heart. I’ve been exposed. I’m not who I thought I was.

Hemodialysis has been incredibly difficult for me. Besides the accompanying pain and stress that came with doing such a high stakes treatment day after day, I couldn’t shake the feeling that I didn’t chose to do this. No one ever gave me the option to accept or reject dialysis. When it started it was a matter of life and death from fluid overload, and I was told that dialysis would most likely be short lived, and my kidneys would recover. As the months droned on I lost hope. People would tell me “Wow! You’re doing well!” or “Look how far you’ve come!”, “We are so thankful you’re still alive!”. But I didn’t feel thankful to be alive. I didn’t feel that I was “doing well”. I couldn’t care for all my children’s needs like I used to. I couldn’t keep up with the house. My body was crumbling before my eyes. I didn’t feel like a good wife. The things I used to be good at slipped through my fingers and down the drain. (This principle is perfectly described in Proverbs 25:20. If you want to learn how to encourage people, this is a super meaningful teaching.)

There was another area of difficulty that came as a surprise, and came encased in darkness. As we received help from so many family members and friends, others became entwined in our experience. They began having opinions on how they thought we were handling things. Some thought we were doing well. Others didn’t. I started hearing accusations that I was not taking enough responsibility. That I was indulging a bit too much in their help. It felt like a slap. It’s not like I wanted to need the help. I didn’t want to be observed and critiqued as I suffered. Who is to say though? I could have been faking. I could have wanted an extra nap, and to not do the dishes. I have no witnesses inside me to vouch for how horribly I felt. I was throwing up regularly, but not necessarily where everyone could see. I was going to the E.R. for all kinds of reasons over the months, but I also rested more than I have at any other time in my life. The sad truth is that I’ve broken down for all to see and I wish everyone would look away. But I’m sitting on display, and I cannot control the narrative. My performance was reviewed and found wanting. There is no counter argument to “She could do more if she tried a little harder.” My word of advice to any fellow sufferers: when Jesus was in deep suffering, caused by his own people killing him, His response was compassion-“Father forgive them. They don’t know what they’re doing”. And my advice to caregivers, even if a sick person takes advantage of your help or your hospitality or your donations… it’s good to be a cheerful giver. Please don’t give out of compulsion.

Fast forward a year and a half, and there came an opportunity to get out of hemodialysis by switching to peritoneal dialysis. With the cancer gone, peritoneal dialysis could get me through till I was eligible for a kidney transplant. What I most wanted was to be free of pain. I felt worn down by it, and by the emotional horror-coaster of getting stuck with needles the size of nails again and again, re shredding up my line of scars; and watching and feeling my blood outside my body. I was prepared for the pain that came with surgery to get a peritoneal dialysis catheter placed in my abdomen. But I was not prepared for the sharp pain that came with the catheter poking my insides. The first few days after surgery I figured it was normal. As the site healed, the inner pain held strong. It was driving me crazy. When I told my nurse about it, he said it wasn’t uncommon. I had no idea. He put some fluid in my belly and the pain lifted. I had relief for about 12 hours. And then the pain was back. He said I could come back in a week and get more fluid. I was crushed. I couldn’t get away from it. So the next hemodialysis session I broke down as we got set up, and I resolved this would be my last treatment. I couldn’t do it anymore. At this point I still had two years before getting a kidney. Leaving behind the pain of hemodialysis for the comfort of peritoneal dialysis turned out to be a fantasy dream, and I woke up to the reality that peritoneal dialysis would be misery. I couldn’t do any more pain. I was done. (In the video you see Mike placing the second needle in my graft. Most of the time he would get it right on the first try, but the video just so happens to show a time he missed.)

Once I decided to stop dialysis several things happened quickly. Mike started contacting people. My parents came. My sisters came. I was determined to not eat or drink to speed things up. I researched online to see how I could make the experience better. Faster. It wouldn’t take too long. When I’ve had desperate thoughts like these in the past, people have challenged me to “not think only about yourself. You have to think about how this will affect your kids, your husband, your parents, your sisters. It’s not all about you.” Even though this is true, it is a selfish statement in and of itself. We are all trying to avoid pain and trauma.

Through my many treatments in the last two years I’ve come to know one thing for certain. There is a limit to how much pain you can willingly submit to. Sometimes pain finds you and there’s nothing you can do about it. But when you are given the choice- treatment or no treatment- there are only so many times you can say “I’ll take the chemo. I’ll take the nausea. I’ll take the machine.”

A few of my mentors from the past gave me encouraging phone calls, and I spoke with my doctors. I was sad, but also at peace, and thrilled to never do dialysis again. Not eating was no problem. Since starting chemo long ago, food has not been as good. I did get thirsty. But I’ve gotten used to being very thirsty and fluid restricted.

A dear brother in Christ sent me a letter challenging me to consider what effect my suicide would have on my children’t propensity to suicide. That word pained me. It made me angry… stopping treatment is not suicide! If it were my lungs that were failing instead of my kidneys, and I was on a ventilator and wanted to be taken off, no one would bat an eye. In the same way, the dialysis machine is the only thing keeping me alive. Why can’t I chose to stop? But the truth is maybe my children would see it as suicide… maybe they would feel abandoned… and maybe when they faced difficulties in their lives they would see death as the easy way out. I could be setting a dangerous example.

And so I started eating and drinking again. And doing dialysis.

I went to Chicago with my sisters for the weekend. Mike’s parents came to support him.

I started taking some antidepressants.

My dialysis nurse gave me manual exchange bags so I could manage my catheter pain at home. Now I have deep pain only during drain periods (about 3 times a day, 10 minutes at a time.)

Scrum (kitty of my dreams) gets spa treatment.

And then we got good news! Mass General in Boston is willing to do the kidney transplant at one year post bone marrow transplant, given the cancer doesn’t come back. And so we wait.

Today I have a bone marrow biopsy (it came back clear!!!). I’m trying to prepare emotionally for whatever the results might show. The last few months we haven’t needed any outside help. Mike’s been able to go back to work while I manage the homeschooling and cooking. I’ve been doing more exercise. In a moment it could all be taken away. Again.

I’m weighed down by my total lack of control. My body is not my own. And despite myself, I feel ungrateful. I’m not thankful I haven’t died yet. I’m not thankful for dialysis existing. I’m upset that our human propensity is to fight against death instead of welcoming it when it comes to claim us. I’m determined to not fight it any more. It’s selfish. It’s embarrassing to not be the triumphant warrior. But if the cancer is back, I will welcome it with open arms, and finally put an end to this gruesome battle that has already torn me open and feasted away. Refuse treatment. The one thing I can control.

***To be more nuanced, there are treatments I am willing to do if the cancer is back… I would do azacitidine, I would do venetoclax, decitabine…but nothing stronger (chemo lite!). I’m not willing to go back to hemodialysis, I’m not willing to do another bone marrow transplant.

I did my best to notice
When the call came down the line
Up to the platform of surrender
I was brought, but I was kind
And sometimes I get nervous
When I see an open door
Close your eyes
Clear your heart
Cut the cord

Are we human
Or are we dancer?
My sign is vital
My hands are cold
And I’m on my knees
Looking for the answer
Are we human
Or are we dancer?

Pay my respects to grace and virtue
Send my condolences to good
Give my regards to soul and romance
They always did the best they could
And so long to devotion
You taught me everything I know
Wave goodbye
Wish me well
You’ve gotta let me go

Will your system be alright
When you dream of home tonight?
There is no message we’re receiving
Let me know, is your heart still beating?

Are we human
Or are we dancer?
My sign is vital
My hands are cold
And I’m on my knees
Looking for the answer
Are we human
Or are we dancer?

“Human” by the killers

10 thoughts

  1. Heidi I hear your voice and your words. I respect everything you said, because no one can be in your body and mind and live what you are living now. Those who love you do their best to carry you through the hard times and help you relish the good times. Yet, each of our lives are totally connected to one other person only, if they choose, and that is God, who created us. He is the one who totally understands. He is the one who carries you and let’s you know he gets it when you’ve had enough and will go with you whoever that path takes you.
    I love you Heidi and my sometimes « wordless », »helpless » prayers are with you often.
    Carino, Vicki

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  2. My dearest Heidi:

    You will not remember me because I was only a part of your life when you were an infant. I have prayed for you these last couple years many times. I can only imagine the degrees of pain you have suffered. But I can relate to reaching that point when you are willing to do anything, anything to make it stop. I knew these thoughts would visit you throughout this journey you are on and I have prayed for your strength and for Gods mercy when they do. Whoever said that “God will never give you more than you can handle” is just full of crap and delusional. But never the less, in the midst of your suffering, in the midst of your doubt, and anger, and fear, and pleading, and tears, and even despair… He is there. Jesus wept real tears of blood and pleaded with the Father to let this cup pass… but it didn’t! I don’t know why such suffering exists in this world but it does. I don’t know why I have experienced events in my life that have taken me down the path that I have cried out “There is no God” and if there is “He is evil”… but I have. After 50 years of walking with Jesus I have been taken to that place of despair where you have been but I can tell you that the darkness is the real lie. There is a God, a loving God and Jesus has been in those dark places too and was raised for our victory over them. Sometimes all we have is this, psalm 139: 11-12, Even in the darkness He is there, Romans 8:35, Nothing can separate us from the Love of Christ… Nothing!!! Nothing!!! Sometimes there really is no Joy. No Praises. No thanksgiving. Sometimes all there is… is that He is there … because he HAS TO BE… and that is enough for his Spirit to stay alive in us.

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  3. Heidi,
    Thank you for sharing your difficult and painful reality. It’s a privilege to witness your honest experience. I’m praying for you and for your crew.
    Much love,
    Libby

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    1. Precious Heidi. I am so sorry. Thank you for sharing honestly. May the Lord meet you in the darkest places. This morning I read Jeremiah 20 (see esp. v. 7, 14-18) which may touch somewhere close. Yet I look forward to the day in glory when I can let Jeremiah know that words he penned (Jer. 32:30-32) met me in a time of spiritual desperation to give gospel hope where I least expected it, when I thought I was beyond saving–potential apostate who could not be saved because “I knew better” raised as a “good girl” Christian and yet had a damnable heart–wanting to end the agony but scared to die and go to hell. Thank you for sharing your testimony–all parts of it. We need a real salvation. This morning I read the March 8 entry of Oswald Chamber’s “My Utmost for His Highest.” Sometimes I can’t quite grasp his meaning or application, but at some point in my life I had starred this entry, and as I read your post today, I feel like you may touch on aspects of the experience he describes. Praying for you and yours. Your kitten and children are adorable. You look beautiful. ~ Laura (friend of Jenna’s)

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  4. Dear Heidi,
    I haven’t seen you in years, and we both had our hands full with young children when I briefly knew you at SBC in Monterey, but I felt a bond with you, maybe just you being a dancer and me being a musician- knowing somebody else that expressed themselves through art and performance. I felt compelled to write because this entry really touched me. I had the same conversation with death with my mom. She had nasopharyngeal cancer, survived it, and had an awful quality of life after- continuous pain, feeding tubes, inability to speak or eat by mouth because her throat had almost closed due to scar tissue, her teeth were rotting because she had very little saliva, vertigo… the list went on and on. I tried to be her cheerleader, always telling her I just wanted more time, but when she finally had to have a procedure on her back that led her to a hospital stay, she told me similar words that you talked about- that she no longer wanted intervention. She was tired- she didn’t want to fight anymore, or feel pain from her earthly body. Surviving cancer wasn’t really surviving with the way she had to live. I finally saw that she wasn’t being selfish- she hadn’t been selfish the whole time she was fighting- she was doing it for me and my sister, even when she didn’t want to. I appreciate you being open in your battles- both physically and mentally. I pray for healing, for freedom from your pain, for a body that is miraculously strengthened. Please know that me and Joe are praying for you, and Mike and your beautiful littles. 💜

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  5. Heidi-you are a Grace filled and amazing woman. I admire how you make truly good decisions in the midst of horrors. Forgive me for not knowing how to serve you. Ask and I will do my best.

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  6. I wrestle with writing a reply when I want to reply. What to say? Sometimes no reply, or silence, can be just as hard as hearing a reply…

    Thank you for sharing your heart. For putting thoughts to keyboard and letting your heart speak. I can image it’s hard to do as going through everything else you’ve gone through. Thank you for sharing it with us.

    I’m so sorry, Heidi. And for Mike. And for your kids. Your Family… How will anyone understand?
    I cry… I cry with you…. I cry for you. I cry out to God.

    Your faith and your words are so real. Thank you for sharing it with us.

    We love you, Heidi. We love you so much.

    P.S. What a perfect song. Thank you for sharing that too. And your sweet kitten.

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  7. Thank you for sharing this update, Heidi. I do not cease to pray for you, Mike, and the kids. The weather in Norfolk is Monterey-like today, a welcome change from a long, rainy February.

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  8. Oh Heidi. You have been strong through all this journey. Even this post shows your amazing strength, Everything you saying and praying for is valid however I am still looking forward to your complete healing. I have not ceased praying for you and your family.

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  9. Dearest Heidi,

    I’m sorry you had to experience such negativity. People are so ready to give an opinion regarding something they know nothing about.

    My Mom used to say, “Walk a mile in my shoes then get back to me on that.”

    Thank you for sharing. I will be praying for you.

    In Him,

    Lisa

    Sent from my iPhone

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