Below will help you better understand why I haven’t been posting and will not be posting over the next few days.
This post is more of a personal blog post. If you’re not into that keep scrolling to my other sections.
I blog for both myself and for others. Maybe telling my story will help others going through the same thing. Looking up support groups is a nightmare. I can’t seem to find any local support groups around me. A lot of info that comes up is all AA meetings. A simple more direct search engine should be made for people looking for support. I am at the point where I want to go to a support group, which I have never needed or admitted. Talking to others in my position shouldn’t be so fucking hard of a task. If anything comes of this, I am going to fix this for others. Not sure how I’m going to fix this, but feeling stuck is the worst feeling in the world.
Pamphlets at the hospital.
Pamphlets at the hospital in my moms unit are suppose to be “supportive” but they don’t really talk about support groups or support practices. You know what the “support” is in those pamphlets, donating. It’s almost a joke to me. Why in the actual fuck would I want to donate when I am literally watching my mom die from a stem cell transplant. In the future, yeah lets talk donation. I currently donate blood at the blood center of Wisconsin as often as I can. That’s not helpful to me at the moment. My mind just can’t get over it. Hospitals support and advice to families/patients is information on how to donate? Not even kidding, they provide you with a number to call and set up the appointment. Information is provided on everything surrounding DONATING. It tells you why donating is a great thing and why you should do it. No shit I know why I should do it and why it’s important. Everyone in the CFAC unit already knows why it’s important. We wouldn’t be in the CFAC unit if it wasn’t for donors. Have it be from strangers or from family members, we all know how important donors are.
That being said, here are things people want to know. We want to know what to do after a family member receives a transplant. We want to know where we can find support when the transplant doesn’t go as planned. We want to know how other people cope with taking care of a transplant patient at home. We want information on places we can go and meet with others to talk. We want information on discussion boards to share stories back and forth. We want information on things that can help caregivers at home or information on a failing transplant. We want to know stories of people having success or overcoming struggles. We want to know information on what happens when a patient ends up back at the CFAC unit after already being home for some time.
2018 a new year a new outlook…FALSE
2018 was suppose to be the year my mom finally got her life back, it seems however the opposite is happening. Ever since New Years Day she has gotten worse and worse. Her current status is just as grim as it can be without her being in the ICU. She is back on a feeding tube, on bed rest and sleeps 24/7. Her brain is completely gone. She has scleral edema, which makes it hard for her to even want to open her eyes. You ask her if she wants her blankets up or down and she reply’s, May. Half the time she won’t reply at all. The doctors keep doing tests and they all keep coming back as normal. No one can tell why she is like this and what is causing it. I am so tired of watching her struggle. I am so tired of being helpless. I am so tired of no one knowing what is wrong or how to fix it. I am so tired of her not having a set doctor and she just sees whatever doctor is rounding that morning. I am so tired of not having a plan of action or knowing if were out of options and they’re isn’t going to be a plan at all. It’s harder to live through the unknown than to know what we are facing. The best guess is graft vs host.
The Final Race
They are down to a drug that isn’t FDA approved but has been known to help transplant patients as a last resort. There is a 30% chance it will work. If it doesn’t than this is it. My heart breaks because when she does come to and wakes up, she sometimes has a moment of clarity and she looks terrified. I ask her if she’s scared and she says yes and tears start to run down her face. Relief washes over me when she goes back to sleep because I’m hoping she dreams of happy things. Whenever she wakes up in a panic I hold her hand and tell her it’s okay and I think this comforts her. My dad contacted her oncologist today, the guy who has been in our corner since the start and asked for a family meeting so we could all be on the same page. We meet with her Dr on Wednesday and we will know if the drug is working or not. I cried a little bit today but somehow my mind is in over drive mode and I’m not allowing myself to break down until we know more on Wednesday.
I don’t comprehend how our brain can subconsciously put ourselves into over drive and just force us to keep living. How do I get up in the morning and not just stay in bed all day. How does my dad find it in him to make sure I’m doing okay before he goes about his day getting up at 5am to go to the hospital, comfort my mom, joke with the nurses and then come home at midnight. How is he watching the love of his life, who he has been married to for over 40 years, slowly fight battle after battle. How does he continue to function and talk about sports and other things happening in life without constantly wanting to talk bout his wife that’s on her death bed. How does he find things to laugh about during the day. How does he have an appetite. How does an event so catastrophic to everyone not cripple us all to the floor. How does our family talk about what’s going on like its another task every family deals with. Somewhere, something deep within our minds forces us to keep moving and keep living. It’s almost as if the more you fight your mind and want to think about it, the worse it becomes. It’s almost better to give into your minds evolving coping mechanism than fight it and face reality. There is so much of my mom in me, I look like her, laugh like her and think like her. I don’t understand why everyone else in my family isn’t more like me and doesn’t find simple things like showering the hardest task in the world. I can’t sleep at night. Laying there, I think of everything and when I do finally sleep its from 9am-noon. I feel like it’s an accomplishment when I can put clothes on to see her. Our brain is such a powerful thing, it gives me some sort of hope that if our brain can put us into overdrive and move on each day that her brain will do the same. Even if her brain is fighting a battle her body doesn’t want to fight , I feel like the power of the brain itself will keep pushing her forward. If my brain can keep pushing me forward and making me function without me knowing, I feel like her brain has to be doing the same for her.
It’s Monday, January 8th 2018. I wrote this article over the weekend. Things have drastically changed since then. My mom is in the ICU living on borrowed time. I’ve cried, wanted to pass out and have been numb for two days now. I’ll cut to the chase…she’s dying. We had the family meeting no one should ever have at my age, and we agreed to try everything but we do not want a DNR. She won’t survive a code. Realistically she has a few days left at most. She is on 24 hour dialysis, a feeding tube, she’s intubated, on a brand new anti-rejection drug, has graft vs host from her stem cell transplant, has a chest draining tube, oxygen tube, blood clots everywhere including one blocking her liver, oh and her liver is failing. I’m sure I’m forgetting things but one will do that watching there mom pass. In Greys Anatomy terms, she is my person.
We decided as a family today to go ahead and try blood thinners. Blood thinners should help to stop the clots from getting bigger but wont get rid of them. The body would take at least two weeks to start making them smaller. Using a blood thinner has a risk for her to bleed out, but at this point she would want to go out guns blazing. She rather go out swinging then just have us start her comfort care. She’s a fighter. If the blood thinner doesn’t work, our final result is end of life comfort care anyways. I’m only able to write this because I am overly optimistic the blood thinners will work without harming her and magically everything else will figure itself out. Once again my brain is protecting my heart, for now. I know it’s a one in a million shot and even if it works we don’t know if her new anit-rejection drugs she started Sunday is even going to work for her graft vs host. Helping the liver is only going to be one problem solved in a long list of irreversible problems. Even writing this it doesn’t hit me. My brain is putting me in la la land because it is the first day there has been talk about helping the liver, even if it is one in a million. For me the liver is the worse problem so if we fix that, BAM everything else will work itself out. My family keeps warning me to understand this is a long shot. They keep telling me not to change what we all know to be true. They keep telling me this is only delaying the inevitable. My mind is living in a peter pan world, and I’m not going to fight it. I know that realistically when she starts to go it’s going to hit me even harder because tonight, for one night, I’m allowing myself hope again. A false hope that is sure to ruin me…but how can you give up on any sort of hope. One in a million odds is better than no odds. I will give into my brains overdrive and live in a false world. I guess I rather go to bed tonight with my heart full of hope, then let my heart face the reality that is ahead. I will have the rest of my life for grief and heartache, but tonight it’s all about that ONE IN A MILLION.