So, I’m Dying. Again. [Warning, this post is not autism-related, more of a heads-up]

So I’m Dying. Again.

I wish I had something beautiful or inspiration this morning. It’s taken me more than a week to write this down, to say this out loud, to notify you – my readers – that even the strongest of brick walls can be brought down.

Most of you know that I lingered at death’s doorstep, completely bedbound, dependent on IV nutrition and hydration, in and out of multi-system-organ-failure from 2010 – 2012. By the time Mayo Clinic took my case I’d been a hospice patient for 28 months. During that time, I averaged between 30 and 130 calories a day. I weighed 240 pounds in January of 2010. By January of 2011 I weighed 90 pounds. By January of 2012 I weighed even less.

I was supposed to die in 2010. I didn’t.

I was supposed to die in 2011. I didn’t.

I was supposed to die in 2012. I would have, had Mayo clinic not intervened. Knowing that I was going to die anyway, they operated and made it possible so that I was able to tolerate tube feeds. For the past two years I’ve been doing a lot of physical therapy and trying to eat as much as possible.

Starving for over two years takes a toll on your body. My bones were brittle, my muscles wasted, my organs failing. With time, my heart and liver recovered, as did some of my kidney function. I got stronger, slowly, and even managed to gain some weight back (my current weight is a pretty-healthy 120 pounds).

Many people have asked (my doctors included) “How is it possible that you survived for so long on so few calories? That is medically impossible.” I have only one answer:

“I’m stubborn, I’m the mother of a special needs child, and I knew that he was going to need me. I coded several times, and every time I watched the code from the ceiling I forced myself to go back into that frail, breaking body, because I knew – I just knew – that C was going to need me.”

By 2014 I was stronger, but eating was still a challenge. Every time I eat I am instantly nauseated, cold, clammy, sweaty, and my heart races. I can only eat a few bites at a time. I was still weak because I couldn’t get enough calories to give me the energy to simply be a mom and stay awake all day. I knew that there were going to be some long-term problems following surviving the impossible, but what I didn’t know – is that in addition to everything else medically I have going on, I have Crohns’ Disease, which is an inflammatory bowel disease which is where my own immune system attacks my intestines, turning healthy tissue into what looks like minced meat.

The major problem with having Crohn’s is not having Crohn’s, but rather having Crohn’s with a history of lymphoma. See, most of the meds used to treat Crohn’s tend to cause lymphoma. With my medical history, the risks were too high to go that route. So we went with the only thing we could: a high long-term daily dose of steroids. Within 24 hours I felt better – I was able to eat an entire sandwich!!!

Unfortunately, my heart isn’t quite strong enough to handle the steroids, and most of you know that the added strain of the steroids on my heart has put me in acute congestive heart failure – which has been miserable.

Well, we lowered the dose of steroids, but my symptoms returned. If we stopped treatment altogether, eventually my bowel will perforate and I’ll likely get septic. We did several echocardiograms and learned that I’m rapidly losing my heart’s ability to “squeeze,” (Ejection fraction). So we had to radically switch gears – because if we keep doing what we are doing, my heart wouldn’t make it another 12 months.

The Plan

So my doctors put their heads together and came up with a new plan. Instead of treating just the Crohn’s, there is a medication that treats both Crohn’s and Lymphoma, hopefully supressing my immune system enough so that I don’t have a problem with either. It’s a bi-weekly chemotherapy drug.

And the plan is bi-weekly chemotherapy… indefinitely. Until (a) I pick up an infection and die, or (b) my liver gives out, again. Transplants are not an option because of my history. It’s a gamble, but it should hopefully buy me more time than 12 months, and that… my friends…. is my story.

148. That is the number of bi-weekly chemotherapy treatments I will need to make it to C’s 18th birthday. That’s 5 ½ years of chemotherapy.

It is just one drug (that we are starting with, we may need to add more later), so hopefully my hair shouldn’t fall out, but we shall see. That’s really the least of my worries.

My Boys

Telling my husband and my son was the hardest thing in the world for me to do. They are both so very fragile. My husband is exhausted after almost 5 years of doctors appointments and bad news. The news hit him hard. My son, being very science-and-logic minded, listened carefully while I explained the anatomy and physiology of lymphocytes (white blood cells) and the differences between Crohn’s and cancer.

When I got to the end, he cried. “Is it worth it?”

“Kiddo, if it bought me ONE MORE MINUTE with you, it’d be worth it.”

“But you are going to be puking all the time.”

“Probably.”

Many of you know that for years I was an atheist. I think you’ll understand – regardless of belief system – that the reason for that belief was situations like this. Situations that seem just so horribly unfair, so horribly unjust, and just so horribly wrong.

See, the cancer that I fought so hard to beat, and won; in the end, will still be what kills me.

Regarding my death:

So lets set some ground rules about my death, friends.

My death will not be a testament to my “lack of faith,” as many would say. My death will not represent any weakness in me other than being simply imperfect down to a cellular level. You might think that you are different – but on a cellular level (even on a molecular level) you are imperfect, too. So do not text me or call me and tell me if I “just have faith,” that everything will be okay. Because – it’s not okay. I’m NOT ready to die. I wasn’t in 2010 and while I am incredibly grateful for each of the 1682 days (or 40,368 hours, or 2,422,080 minutes) I shouldn’t have had, but I have had. I just happen to want 5 more years. I have a promise to keep. I promised C the first time I saw his face that I would never leave him. I plan to try to keep that promise as best I can. Recall that I am stubborn, and I will fight with everything I’ve got for one more minute with him.

He is worth it.

There are people in my life that are not worth it. Those people can choose to remain in my life and be supportive, or they can continue to live as though I don’t exist. It won’t matter, because pretty soon, I won’t, and they won’t have anything to worry about. That is on them. Last time I was on hospice I went out of my way to forgive everyone and give everyone a chance to say their goodbyes. I did that because I genuinely am a kind and compassionate person, and I didn’t want them living with regret long after I was gone. This time around – my focus is much more clear. I need to focus all my energy and love on those that are worth it.

Also, while we are talking about my death, I’d like to mention that I do not wish to be buried anywhere in California. I do not want a traditional funeral, just a memorial service. One of my very best friends was supposed to conduct my funeral and he died a couple of months ago in a plane crash, and without him conducting it, I don’t see any purpose in having a traditional funeral. I wish to be cremated and most of my ashes, with the exception of 7 grams of them, are to remain in the custody of my husband until my son is 18, at which time he will get them. The other 7 grams of my ashes I would like to be launched into outer space at the expense of my biological father. For the information on how to arrange that, Dad, click here. Please note that I want them launched into space, outside of the earth’s orbit, not just sent up in some hand-made rocket-launcher.  There are still many places I would like to see. [I hear Mars is fabulous this time of year*] As much as I traveled during my time as both a military spouse and a US Sailor, there is still so much of this planet I want to see, there is still so many things I want to taste, touch, and feel, that I will never get the chance to do. At least from outer space I’ll get to see the bigger picture of all of that. And, the rest of my friends and family can watch the launch from Houston, should they choose to. Texas is halfway between Florida and California, so I think that’s fair.

I guess I could end this by simply saying that sometimes life is just not fair. In the meantime, I plan to keep my head up, my makeup on, and stay well-medicated during this next chapter. I refuse to live like I’m dying, I insist on living like I have infinite days, making each one better than the last. It is how I survived an extra 1682 days longer than any of my doctors anticipated. I refuse to be unhappy, I refuse to be miserable, but I will allow myself to be angry that I fought so valiantly – and ultimately – still lost. What can I say? I’m a sore loser. Just ask my boys – I hate losing.

If there is one thing I know for sure, it’s that of the future, I know nothing. I did not see this coming, nor did I expect or anticipate to ever have to be so sick again, but it’s here, it is real, and it is happening. As for my blog and my page and my autism advocacy, that can be continued from any hospital kind enough to have decent wifi. To my readers, I will write when I can, publish when I can, but my main focus has shifted.

My objective now, more than anything, is to love and cherish every minute I get with my amazing little boy, and fight like hell for the next moment with him.

For those that stood beside me last time, and to those who stand beside me now, I thank you, and I love you. Please keep my family and my boys especially in your thoughts and prayers in the days/weeks/months ahead.

Sincerely,

Rachele

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39 responses to “So, I’m Dying. Again. [Warning, this post is not autism-related, more of a heads-up]

  1. There really aren’t words enough to adequately express what I felt reading your words . . . Your strength is beautiful, and this sucks. Every little bit of it. No sense in saying it doesn’t, I hate it when people do that. My faith does not tell me everything will be okay or get better, but it does bring me a comfort and a strength to draw from when I am weak, I pray you are blessed with strength, comfort, and people who can help you through and lift you up when you need a helping hand . . .

    Liked by 1 person

  2. I’m sending lots of hugs and good thoughts to all of you. Life is never a guarantee, but when someone has been through all you have you want more for that person. As with Aisy, I live as every day is our last together. Cherish all the good and let go of the bad. I’m so happy that you have an amazing husband and son that have been your rock. I want to say thank you for them for being there for you always and making you the great mom and person you are. Hugs to all of you!

    Liked by 1 person

  3. Pingback: So, I’m Dying. Again. [Warning, this post is not autism-related, more of a heads-up] | lasmith36·

  4. What a warrior you are! Bless your heart and your family.. You will be receiving prayers and positive thoughts daily from Ohio, honey. My god performs miracles and he isn’t done with you yet darlin! Lots of love your way.. ❤❤❤
    An autism mom

    Liked by 1 person

  5. Prayers for you and your family. This entire blog is a lasting testament to your love, devotion and warrior-spirit.

    The world is a better place for having claimed you – even if only briefly.

    {hugs}

    Liked by 1 person

  6. My friend, my wonderful and strong confidant, I could hear your voice in my head as I read your words. It felt almost as though you were telling me while laying in my backyard hammock… Both real and unreal. I accept that death is something which will visit everyone I love but I must say that I’ve never been angrier at that prospect than I have when it comes to you. You are a bright light in a dark world and you bring joy wherever you go with that delightfully quirky (sometimes devilish) humor. Your tenacity and your devotion to your family is the stuff of legend.

    All of that said, I see the wisdom in The Plan while simultaneously hating The Plan and the circumstances which made it necessary. If there is anyone on this tiny planet who could make this work and beat the odds: it’s you. Of this, I am absolutely positive.

    You know I’m your friend forever. Whenever you need to hear from your cheering section, I’m always available. 🙂

    Love you boundlessly.

    Liked by 1 person

  7. You are amazing. As a wife. As a mother. As a person. You have amazing strength and an incredible will to fight on and live as long as possible. I will pray for you and your family to continue to help you fight. Who knows? Maybe you’ll get more than 1682 days this time around. I’ll be praying that you do.

    Liked by 1 person

  8. I have a son with autism also.
    My god give you the strength to make it past his 18th birthday their is a reason you have gotten this far god has a plan and I think you are going to be ok and make it past all this my strength is here for you and if you need a hand or a voice or a friend I am here all the way just to listen and be supported your family is strong and you are one tuff warrior that is a fighter .
    And just being a mom with s special needs child is an awsome challenge and just shows how much u fight for your family !!! Good luck keep fighting

    Liked by 1 person

  9. So so sorry. You will certainly be in my prayers. I have only be reading your blog for a few months but you have given me a lot. May God just give you some more strength, he has certainly given you much of it before, along with wisdom love and kindness it feels to me.

    Liked by 1 person

  10. Pingback: The Start of the Heart | loorducation·

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