Tag: hope

No More

No More

I keep rewriting this because it’s hard to say, and hard to face. That’s also the reason I broke down today while relaying the past two months’ developments to my pain management doctor. The hard truth is that adhesions have very likely grown back on my rectum and bowel and possibly other locations, four months after they were removed by a world-renowned endometriosis specialist during a grueling two-surgery process. I’ve been working with my PCP, endo specialist, gastroenterologist and nutritionist to treat severe digestive dysfunction and abdominal pain which has made me pretty sick, and kept me on a liquids diet for a while. If it continues, it will threaten my ability to digest food properly until another surgery to correct it.

This is all on top of trying to find solutions to multiple co-morbid diseases and dysfunctions that endometriosis and its treatment has caused. Oh, and the medication I take to suppress all hormones in my body with the intention to prevent further endometriosis growths is changing my body in multiple soul-crushing, potentially permanent ways, although I know that the benefits outweigh the cost.

I felt amazing, just two months ago. I had some of the same issues then, but there was progress being made, and it felt like everything was moving in the right direction. The suffering and damage incurred during four surgeries and treatment appeared to have made me exponentially healthier. I had hoped that we had at least subdued endometriosis and adhesions for long enough to give my body a chance to fight off the rest of the attackers.

While I am absolutely in far less pain, while I know that my surgeon potentially saved my life, and while I don’t regret the surgeries for a hot second, I’m so beyond belief, or emotions, or words. Frustrated isn’t the right word; neither is angry, or sad, or upset. None of those convey the nagging feeling, the empty gravitas of accepting that no matter how many surgeries or treatments I endure, I was born into a body whose very perfectly natural, normal healing process, adhesions, curses me to indescribable pain, organ dysfunction, and helplessness. That what restores others to health will always chain me to disability.

There won’t be any avoiding these patterns, there won’t be any chance of outrunning the pain, there won’t be any graduating from routine follow-ups, there won’t be a knight on a white horse in an OR or waiting for me outside the office of the twenty-seventh specialist I’ve seen in as many months.

I think the only truth that allows me to continue traveling through each day like everything is okay, that equips me to laugh and plan and sit calmly binging The Newsroom with my fiancé while at the same time knowing that I will never totally or even partially shake off the pain, the appointments, the medicine, the fear of the faceless adversary wreaking havoc on my very core, under my skin… Is the realization that I have no other choice.

I no longer have the option, the luxury of lobbying to evict my nemesis. I don’t get to take the easy way out, of just waiting to kick the sucker out to begin living. No, that’s not how my happy ending will work. Mine will more or less take the shape of, “the best revenge is a life well-lived.”

You heard me right; there’s no more waiting until I’m healthier, until I’m done fighting endometriosis, or feeling stronger. There’s no more putting off goals I want to pursue, places I’m dying to see, risks I’d love to take, and the other innumerable joys and disasters awaiting me when I’m “better”. Endometriosis may not be killing me, but giving it all my time, energy, and devotion might as well be. I’m watching my life pass me by, waiting for this demon to leave, while he’s signing a mortgage on a three-bedroom and picking new tile for the master bath.

No more. No more waiting to fight another battle when I’m stronger, or less emotionally tired, or when I’m done with this six month treatment, or when the IV bruises have faded and I stop running my fingers over the several new abdominal scars I picked up in Texas.

This being caged by my own body’s attempt at erasing the painful history of trauma, my own body’s success in restoring my flesh? This inability to stop healing, which ironically harms me? This is the very reason that I can no longer put off living for “someday”.

I must capture, seize, hold hostage this day, this very day, the one that you and I are both living. I no longer have the luxury of letting it pass by while waiting for a better one. That day may never come, and I will die with a life haunted with “what if”.

I may not be able to control my body or the storm brewing inside me, but I can choose to muster the courage to live fearlessly and boldly not in spite of the pain or suffering, but with the knowledge that nothing I have faced yet has broken me, and nothing has been too difficult for me to overcome with the strength of the Lord and my loved ones.

The joy in life doesn’t come from the pursuit being easy, but rather it being worth the struggle and passion poured into it. My waiting stops, my story continues, and so does my fight. How about you? What are you fighting for?

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Day 25 – It is Well

Day 25 – It is Well

I have been struggling with anxiety, the type where your chest hurts, your mind freezes, and your breathing changes, for the first time in my life. I’ve even had a couple panic attacks when thinking about the surgeries, what my body, mind and spirit will go through, and experiencing flashbacks of the previous three surgeries in the past three years.

To help center my mind and heart, I’ve been reading Psalms and going through several devotionals through the Bible app, focused on anxiety, trials, suffering, grief, illness, and hope. One of my devotions today discussed fear of the unknown as being the true origin of anxiety. It said that when we want to control an aspect of our life but can’t, it sends us into a tailspin of worry, fear, doubts, and feeling unsafe, fragile, precarious.

I immediately thought of the impending surgeries, the entire process, the sinking feeling of helplessness that hits me whenever they come to mind. I also acknowledged that my intense planning for the surgeries, (packing and shopping and making lists of lists and asking questions and gathering documents and changing my diet and preparing my body and mind) is a desperate attempt to grip onto what little bit of control I can wrestle away from the unpredictable monster named the OR.

On Friday, October 27th, after all flights and drives have ceased, after all pre-ops and bloodwork and ultrasounds and IVs are finished, my surgeon will meticulously excise (cut out) each spot of endometriosis on my pelvic walls, muscles, organs, etc. This alone can take hours, as he will make a wide margin around each growth so as not to miss any cells that could continue growing at a fast pace and threaten my chance at remission.

This takes precision, skill, knowledge, and a trained eye. Dr. Dulemba’s ability to do this delicate type of surgery is what distinguishes him as a true endometriosis excision specialist, which is closer to a gynecologic oncologist than your standard OBGYN. After the endo has been removed, he will remove my appendix, burn some nerves around my uterus to decrease pain, check out my organs, and remove whatever may be damaged. This will be followed by a hospital stay, an IV, catheter, and On-Q pump to locally manage the pain.

Five days later, Dr. Dulemba will go back in and remove any scarring that may have formed on the hundreds of internal incisions created during the first surgery. These scars, adhesions, can be almost as painful and damaging as endo itself. Then he will use Amniofix, sheets of gelled umbilical cord harvested post-birth, as a covering on the newly scraped incisions, and this will protect the incisions from scarring over again. One month later, my body will absorb the gelled umbilical cord, as it’s an organic matter. After the second surgery, I’ll repeat the routine of the hospital stay, IV, catheter, and On-Q pump.

At the end of the devotion, the writer asks you to focus on the one fear deep in your heart that is at the center of your anxiety and fears. He challenges you to surrender it to Jesus, lay it at His feet, and let it go. When I questioned my heart, I could separate my fear of the surgeries process from the fear of the outcome of the surgeries, and one outcome in particular, one that’s hard to discuss with my boyfriend and parents because it will change their lives forever too.

I don’t know if I will wake up on October 27th and hear the words “we had to remove”, “there was no way to save”, “I’m so sorry”. I don’t know, when I’m rolled out of the OR into recovery, if my fertility will be still with me, still inside me, still part of me. I don’t know if my dreams of holding a baby girl that has my cheekbones or my love’s blue eyes will die that day. I don’t know if my heart will be broken when my consciousness returns.

There is no easy way to brush it aside, to pack into a neat box and put it on the shelf of my sub-conscious, as I have been trying to do for months. It is a possibility, a nightmare that has unfolded for many of my endometriosis sisters with advanced endo after a similar surgery. I have stayed up with them crying and listening, I have shared their sorrow, and I have prayed for their shattered hearts.

Today, after reading the devotional, I prayed for Jesus to ease my fears, for Him to teach me how to fully lay it down at His feet, and for me to be able to wholeheartedly believe, “Thy will be done”. I prayed for help remembering that His love for me is so great that, if that is the path I am to walk, He has chosen this path in love, in protection, in goodness, in kindness towards me, His precious daughter.

I am still struggling with this fear, and I probably will until the fateful moment I awake from the first surgery and hear the surgeon’s report, but one of my favorite songs states “There’s a place where fear has to face the God you know.” And I know the kind, gentle, ever faithful, all powerful Friend who will be with me in the OR and beyond. So with every fearful thought and pang of fear and heartbreak, I pray for bravery to say no matter the outcome, “It is well with my soul”.

❤ Katie