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Writer's pictureCaitlin Lagnese

No More Bandaids (3- Final Part)

I experienced intermittent bleeding until I underwent the big surgery on July 15. The surgery, a partial hysterectomy, involved the removal of my uterus, cervix, and fallopian tubes. Fortunately, the surgery went smoothly and my recovery has been going very well.


Starting in November 2023, I began keeping a notebook to document the number of days I bled. I made sure to track the process diligently. Over the course of nine months, I bled days more than not. However, this post will not dwell on the negative aspects. I won't be discussing the surgery or recovery in detail. Instead, this post will be about the 6 most valuable lessons I've learned and the incredible support I've received along the way. I may have lost three organs, but man have I gained a greater capacity for love and compassion. Let’s chat!


Lesson 1: I can do hard things

I used to shy away from difficult and uncomfortable tasks for most of my life. Stepping outside of my comfort zone and taking on challenges head-on was not something I was accustomed to. However, I have undergone a transformation that has instilled in me a newfound sense of resilience, perseverance, and confidence. I have learned to embrace the discomfort and uncertainty that accompany difficult situations.


When I was told by Dr. Larry and others that I would have to spend weeks on the phone battling with insurance, I was initially filled with dread. The thought of engaging in heated conversations with strangers made me feel nauseous. I even questioned whether enduring years of suffering would be preferable to confronting strangers over the phone. They advised me to be assertive, to make my needs known and not show weakness. This was a daunting task, but I summoned the courage to make those phone calls, doing my best to remain kind and composed.


The challenges didn't end with the phone calls. I also had to navigate many doctor appointments, failed procedures, and the ongoing battle while coping with limited energy and strength. It was already difficult for me to handle these tasks when I was feeling well, let alone when I was feeling utterly depleted. However, this entire process has not only strengthened my life skills and abilities but also expanded my personal growth and development. Now I feel empowered to face future challenges with a positive mindset and the determination to overcome any obstacles that may come my way. I have gained a newfound belief in my ability to tackle difficult tasks and have developed the resilience to persevere even in the face of adversity.


Lesson 2: I AM a big brave dog

During my childhood, when fear would creep in, I would whisper to myself, "You are a big brave dog." I vividly remember being eight years old at summer camp, repeating this phrase in my head as I courageously attempted the monkey bars. However, as time went on, I somehow forgot about that big brave dog. That is, until after my surgery, when I started reciting that phrase every time I had to get up to use the bathroom or take my daily post-surgery walks. It became my mantra during the recovery process. To some it may sound silly or even childish, but for me, bravery is a newfound quality. I never thought of myself as naturally courageous. That's why words hold such significance for me, why words of affirmation resonate so deeply. The words we use to describe ourselves often shape our narratives. While I may not possess the strength of a Rottweiler or Mastiff, I am determined to embody the spirit of a feisty pug or bulldog!

Lesson 3: Healing is NOT linear

My mom always emphasizes this. After my surgery, I experienced a lot of pain for the first 48 hours, which was to be expected. As soon as I noticed even the slightest improvement in my walking ability, I unconsciously convinced myself that I must be a super healer. The more people complimented how good I looked and how well I was moving, the more I felt the need to push myself even further. However, I have to remind myself that I still have limitations and I can't push myself too hard at this stage. I had to learn this the hard way when I thought I was ready to drive and take longer walks day 6 of recovery. Definitely pushed myself way too hard and for what? Last time I checked there wasn’t an award for fastest hysterectomy healer!


That's why I often tell people that I'm in the process of recovering from being a people-pleaser. My approach to pleasing others has changed over the years. Up until my 30s, I would do anything for anyone just to maintain peace and feel loved. Nowadays, it's more about wanting to appear strong and stoic, similar to my husband. A few years ago, my husband had his appendix removed, and just three days later, he was actively coaching Matt's soccer game on the sideline. I'm sure he was in pain, but he didn't complain much. That's just the kind of person he is, and I admire his stregth. However, I'm not a coach, and I don't need to push myself as hard after having three organs removed. Honestly just because someone can do something doesn’t mean they always should. While I am healing faster than expected, it doesn't mean I should neglect rest and my medication. Healing takes time, and sometimes, we just need to take a break and allow ourselves to rest.


Lesson 4: Look for the helpers

The overwhelming amount of love and support I've received throughout this entire journey brings me to tears. Since November, my family and friends have been my biggest cheerleaders, my strongest supporters. I am truly blessed to have built such an incredible community, and I am immensely grateful for all the love that has been showered upon me in these past few months. From the uplifting messages and heartfelt visits to the delicious meals and thoughtful gifts, words cannot express how thankful I am. If you ask my husband, he can attest to how many times I've been moved to tears just thinking about the love and support we’ve received. I've always believed in the power of community and lending a helping hand, but there was a time when I struggled to accept help myself. I was always quick to offer assistance but hesitant to receive it. However, my experience with endometriosis has taught me the importance of saying yes. Post surgery when a neighbor or friend offered to take my kids on a play date or accompany them to the pool, I immediately accepted their kind offer. When a family member or friend asked if they could prepare a meal for me, I graciously welcomed their generosity. And I can assure you that once I am back on my feet, I will pay it forward in every way I can. I am currently in the process of writing numerous thank you cards, but I wanted to take a moment to give a heartfelt shoutout to my incredible family, friends, neighbors, community members, and medical team. Your unwavering support has meant the world to me, and I am forever grateful.


Lesson 5: God works in mysterious ways

My journey of faith has been filled with ups and down, but isn't that true for any meaningful relationship? I choose not to fixate on religious labels too much because I believe that religion is not a one-size-fits-all concept. The idea of organized religion has always posed difficulties for me, as I prefer not to confine God to a box. After all, religion is to some degree a human construct. Furthermore, I acknowledge that religious and spiritual beliefs vary greatly worldwide, often influenced by one's upbringing and cultural background. Call me a terrible Catholic but I will never force my beliefs on to anyone. I hold deep respect for everyone's beliefs, and my home is a place where kindness and respect are embraced regardless of faith.


During a recent conversation with a fellow Christian friend, I expressed my curiosity about how she finds certainty in God's existence. I admitted that I, too, grapple with that question at times. Faith can be elusive because it is not something we can always see with our physical eyes. God is not a genie who grants our wishes at will. However, as I continue to mature and gain wisdom, I am beginning to realize that perhaps we can experience and witness our faith in tangible ways. I often don't feel the strongest connection with God in a church setting or when reading the Bible. Instead, I often sense God's presence most profoundly during challenging moments. It is in those times that I remember to surrender and seek solace through prayer. Remarkably, I have witnessed God's grace through the people He brings into my life at just the right time, as well as through the experiences of loss and separation. The saying "everything happens for a reason" has repeatedly proven true in my personal encounters.


I have decided perhaps the essence of our faith lies in the very act of creation itself. For instance, when I observe fireworks or attend a sporting event where the crowd unites in harmony for the wave, it moves me to tears. It serves as a reminder that people from diverse backgrounds and beliefs can come together and appreciate the beauty of the world. In those moments, there is no room for hate, only love. This sense of community and the love that emanates from others convinces me of the existence of God. There is something beyond our comprehension in this vast universe.


Prior to our much-anticipated Disney vacation, I dedicated weeks to prayer and meditation, hoping for a pleasant time with my family and a break from my health struggles. Astonishingly, during our vacation, I experienced 12 consecutive days without any bleeding, a remarkable achievement since I had not been able to string that many days since November. This was also a significant milestone considering the amount of walking we did and the physical demands of a Disney trip. On our journey back home, I received the long-awaited call that my surgery had been approved. It felt like one big miracle, one among many I have encountered throughout my life.

Lesson 6: Your worst day is someone’s best day. We MUST do better!

This experience has been incredibly humbling for me. It's astonishing to realize how many women I've encountered, even just through my doctor's appointments, who have faced similar challenges. The complexities of dealing with insurance have become painfully clear to me. It's heartbreaking to think that people are losing their lives to cancer and other illnesses just because they can't access the proper coverage or afford the exorbitant medical bills. Imagine having a loved one with a last chance at life through an experimental drug that could potentially work, but having to tell them that insurance won't cover it and they will most likely die.


Additionally, it's disheartening to discover how many women suffer silently with severe menstrual and reproductive issues. We are often told that this is just the way it is. Sucks to be you. But whatever you do, don’t talk about it!

Look, I understand that our healthcare system is not perfect, and I don't blame all doctors or insurance companies. There are good people everywhere. However, what I can't comprehend is the lack of empathy and understanding within our medical system as a whole. It's absurd, especially considering we live in the United States of America. While dealing with severe endometriosis for 9 months was challenging, I consider myself fortunate to have had a positive outcome. Unfortunately, many others are not as lucky. And my medical issue while annoying, wasn’t gonna end my life either. It could have been so much worse.


The fact that insurance companies often seem to work against us is infuriating. It all comes down to money, doesn't it? I shouldn't have had to fight so hard to get a necessary surgery when my doctor had repeatedly proven its necessity. I felt set up to fail from the beginning. Continuous estrogen birth control acted as a temporary solution, but it eventually caused more health complications and proved to screw me over when the insurance company wanted to see recent scans and tests. Sometimes we need to remove the bandaid and reassess the injury. Unfortunately, that option was never presented to me. All I want is better for women. I want better for our daughters. Frankly, I want better for everyone. This entire experience has opened my eyes and taught me more in the past 9 months than I had learned in the previous 9 years. It forced me to mature and confront difficult situations, finding my voice along the way. Just the other night, my husband expressed how proud he was of me for being the one to fight this battle. Normally, I would rely on others, like Mike or my parents, to fight for me. But this time was different. I was angry. I was hurt. And I finally saw through the nonsense that needed to be addressed. What it really came down to was me putting on my big girl panties and perhaps for the first time in my adult life, fighting the fight. Of course with dignity and class.

 

Phew! To end on a truly positive note, I want to express my deepest gratitude to my womb. She has been through an incredible journey, defying the odds by carrying not just one, but two beautiful babies. I am incredibly thankful for this resilient organ. From day one, she has been stronger and braver than I could ever imagine. However, it was time to put an end to her suffering and bid her farewell. While I was still a little loopy after surgery, I shed a few tears because I didn't get the chance to say a formal goodbye. Closure is important to me, after all! But on a more serious note, it has been quite the rollercoaster ride. Closing this chapter of my reproductive life feels liberating, and I take comfort in knowing that I will never have to experience another painful period or endometriosis episode. It's a relief to be free from birth control and the worry of pregnancy. This surgery had been a long time coming, and I owe its success to my exceptional medical team and my unwavering support system. Dr. Larry and his staff were so unbelievably kind and patient during this ordeal. He would not let me throw in the towel no matter how many times I said this was a wash and waste of time. The surgical staff at Cleveland Clinic were also so wonderful and helped ease any worries I had. And even though I was in a large amount of pain those first 48 hours, I still had a blast with my mom who took care of me while Mike worked. Speaking of Mike, my incredible husband of 11 years. He has been my rock, showering me with love, support, patience, and understanding throughout this entire process. He has been my biggest advocate!

I often acknowledge how challenging this journey has been for him and the kids. My hormones have been all over the place, and I haven't felt good for a long time. I cannot wait to finally reach the other side of this ordeal. And ladies, I am so close!


Before I finish this long post and officially close this 3 parter, I do want to send my most heartfelt and sincere prayers to those women out there who were not as lucky as me:


To the woman who bleeds pints during her period each month, I see you.


To the woman who bleeds excessively and frequently, I see you.


To the woman who experiences gut-wrenching cramps each month, I see you.


To the woman who has/had uterine or ovarian cancer and was robbed of many things, I see you.


To the woman who cannot carry a baby, I see you.


To the woman who cannot conceive a child, I see you.


To the woman who cannot exercise her reproductive rights, I see you.


To the woman who was brutally raped and will never be the same, I see you.


To the woman who is fighting for her life, I see you.


To the woman who is fighting appeal after appeal, I see you. Don’t give up just yet.


To the woman who cannot afford proper medical care and doesn’t have a stable support system, Gosh do I see you.


To the woman who is depleted and feels she gives and gives and never receives, I see you too.


I could go on and on couldn’t I? Let’s keep fighting the good fight ladies. We are WORTH it. We are STRONG. We are WARRIORS. We are WOMEN and you better bet you are gonna hear us roar!


Xoxo,

Caitlin


1 comentário


angela
30 de jul.

I couldn’t love this post more than I already do! You’re joinery? Your fight I couldn’t be more proud to call you my friend! Despite the challenges and hell you’ve been through, you still express positivity! The piece when you talk about your journey into faith… same girl! ♥️

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