Before I go any further, let me make one thing straight. I want things to get better. I really do. Nothing is harder for me than to look people in the eyes and either a) tell them I’m doing much better, a.k.a. lie straight to their face so we both feel a little more comfortable or b) tell them I’m still tragically hurting because most times they want to fix it. And while I’m not asking for them to fix it, I am ashamed that I’m still in this horrid place of both horrendous physical and emotional pain. With that being said, I will continue…
I feel as the weeks have carried on I’ve gotten a bit stronger, like I previously mentioned. I am playing my well-rehearsed part of “Chronically- Ill Katie.” I know when’s appropriate to smile and that short, vague, and yet positive upbeat answers are best. I can laugh if it’s called for in a social setting and then when I go home I can unravel once again. This time around it’s a lot harder than it’s been in the past. It takes much more energy, more focus and determination than ever before. Hence, if I could, I would opt to always stay at home. In fact, more times than not I am the ultimate homebody.
I know that in the stages of grief there is not one for “regret” but right now I’ve really been struggling with if I made the right choice. The last few days could have very well been my hardest ones emotionally. I’ve told you before that I feel very panicked and overwhelmed when my head and heart connect on the fact that my surgery, its outcomes and ultimate conclusions are permanent. When I am in public, or even watching a movie or television, when I see a mother with her child or a pregnant woman, I have this ultra zapping feeling. Like I can see the fired arrow, targeted straight at me and as my heartache increases and my mind begins to swirl, I realize that will never be me. And each time hot tears spill down my cheeks.
Well, this week was a little worse than just that. If you’ve ever been in an unfortunate circumstance or perhaps even interested in a specific hobby it comes with the perks of meeting new friends, of gaining a new family. For example, bikers always take time to be with other bikers. Wine aficionados gather together for tastings, and those with infertility issues find each other because no one else understands us like someone whose been in our shoes. I found out all three of these celebratory instances on Thursday and while they left me sincerely happy for my friends, they left me broken and angry for myself. I found out that one of my dear friends, and my first infertile friend raised over half the amount she needs to do IVF. She doesn’t even need to raise the full amount based on her financial status so when I heard the news I knew IVF was just around the corner. Another acquaintance/friend gave birth to boy and girl twins after doing one round of IVF. After looking at several of her pictures I rejoiced with her and her husband and their sweet 4-year-old son. How wonderfully God has blessed them. Finally, a friend who I went to grad school with received in the mail all of her IVF meds and I believe starts the process today. Granted, it’s probably true that all of their stories don’t involve as complex a medical background as mine but as I was sending my genuine joy to them, I was simultaneously weeping in a sorrow I never wanted to experience.
There was a time when I wanted to raise money so I could try IVF, so I could exhaust all possibilities and know in my heart that it truly wasn’t possible, or then again perhaps it was and today I’d have a baby. However, I could never bring myself to do it, to ask people for that. Yet, here I am now, in between a rock and hard place, asking for help financially for medical expenses, and my friend has raised more and hers may end with a family, a precious baby to swaddle in her arms. Please don’t read into that thinking I am not appreciative of all the financial help we have received because that is not the case at all. We would not be able to manage without.
My friend with her brand new set of twins. She said in a blog about her story of IVF, that she noticed little coincidences happening throughout her IVF cycle that made her feel like God was affirming her decision of moving forward with IVF. This girl, she is the sweetest person alive, but she not only had one child, God gave her two more? I can’t help but wonder- Did he forget about me?
Finally, there’s my friend from graduate school. She’s nervous as can be to start IVF but she’s going to do it and she doesn’t care how much it costs. I can’t help but think, we have the same education, the same background. If I hadn’t been sick all these years and been hired right out of grad school like a healthy, normal human being, would I be standing in her shoes?Regret.
At one of my doctor’s appointments this last week I was talking to my doctor about my unexplained weight gain. It is really getting to me because it doesn’t make any sense because I haven’t started my hormone replacement therapy. I know something is not right because my appetite just isn’t there either so it’s like I’m gaining out of thin air. Without an answer to what was really happening his response was, “Well you decided to have this surgery, and sometimes this just happens. It’s something you’re going to have to learn to live with.” I wanted to burst into tears. I decided? Well maybe he can decide to buy me all new pants. Regret.
Doctors have been baiting me to have a hysterectomy since I was 19 years old. Telling me that my body was so diseased and the more time that went on, the worse things would get. They never told me until a year and a half ago that I would not be able to have children on my own accord. I regret not knowing the whole extent of my problematic and complicated medical surgery sooner. If they had told me at 19 this was going to be an issue, I would have frozen my eggs then and not have waited until it was too late and my egg supply was almost completely nonexistent. Regret, Regret, Regret.
Being in pain, and I mean exasperating pain day in and day out and so much so at night that it disturbs your sleep will suck the life out of you. Combined with other painful chronic illnesses, having tried to get pregnant for 4.5 years trying everything under the sun other than IVF, incessant bleeding all throughout my cycle and having had over 16 surgeries on just that one centralized area of my body is what led the many doctors and specialists I saw to recommend a hysterectomy. All other treatment options had been exhausted to cure me of this disease and none had been successful so this was literally my last hope. It took me years to come to the decision of having a hysterectomy and in many ways it was no longer a choice that was in my hands. I had a major mass that needed to be removed because it was causing great pain and my surgeon was not keen on doing yet another operation that would allow my body to form even more scar tissue and adhesions.
The day of my prost-op appointment, one week after my surgery, I went to my doctor’s office with my mom and Nate. We talked about the surgery and the great deal of pain I was in. He looked at my incisions and then I looked up at him and with the biggest lump in my throat and fast tears pouring down my cheeks I asked him, “did I make the right decision?” and he told me, “Katie, it was a mess in there. Had I gone in to clean things up and to try and give you some margins so you could at least try and get pregnant it would have never worked. Your body was covered by disease. There was so much that was unsalvageable. Yes, this was the right time.” As much as his words stung and they didn’t stop my tears, I knew that I had been irreparable. It was like I’d been through a fire and when that happens you don’t save the charred black couch, trying to scratch off pieces of the black hardened ash, instead you get rid of it completely.
Yet today I still feel regret and maybe it’s not regret entirely about the surgery although I know part of it is because since Day 1, I had told Nate I wanted to try IVF before a hysterectomy so I knew I had tried everything and could rest easy with my own thoughts. I regret the fact that I am jealous of every mom I see and every dad I see who has a child, by way of birth or adoption. I regret that I’m envious of pregnant mamas and how I will never experience that (heavy sobs). I regret that this is my story and it’s the one God wrote for me which makes me regret even saying that. I want to take comfort in this place, to somehow find joy in these circumstances, and instead of regret, relief.
I’m genuinely joyful for my three friends I mentioned above. I cried upon hearing all of their exciting news. Empathetic tears of joy and tears of my heavy grief when I couldn’t help but wonder if it could have been me. However, I know focusing on regret will get me nowhere and it will certainly suppress me from moving forward.
Philippians 3: 13 states it perfectly, “12-14 I’m not saying that I have this all together, that I have it made. But I am well on my way, reaching out for Christ, who has so wondrously reached out for me. Friends, don’t get me wrong: By no means do I count myself an expert in all of this, but I’ve got my eye on the goal, where God is beckoning us onward—to Jesus. I’m off and running, and I’m not turning back.”
Right now, I’m not sure if Nate and I will ever have a family. We are still taking odd jobs and trying to raise enough money to pay off our medical debt. Adoption is expensive. When Nate and I first started talking about the future together we discussed having children together and also adopting. In my mind, I always thought the children we adopted would just “show up.” Like a friend of a friend’s uncle would have a babysitter that wanted to give her baby up for adoption and instead of going through an agency we would adopt the baby. You catch my drift? Right now it’s even hard to imagine adopting, loving an adopted child, affording to “buy” an adopted child and that's coming from one of the biggest proponents of adoption because adoptions has given me two of my most favorite people (i.e. my brother Ryan and my nephew Jax).
Not too long ago we were approached about a roundabout situation, one that we could perhaps actually afford, but as of right now it could be slipping through the cracks and we are not sure whether to fight or not. Right now I feel like I don’t have the strength to do that because throughout this entire process I never let my heart get involved but at the same time I wonder is this your will God? Please pray for this if you can. But at this time we aren’t ready to give any more specifics than this.
To be honest I was quite nervous to ask for help in any way shape or form during this crucial time in our life because we’ve never done that before. I’ve rarely let anyone into the world of my illnesses. But, it is because of this community that we have even come this far. I knew God was asking me to be brave and open and He has blessed me by obeying Him. That is probably my biggest non-regret ever. I will say though, if at the 6 month mark if I am still in tremendous pain, per the doctor, that will mean the surgery did not work to help the painful part of my disease and that the microscopic endometriosis is still in there, as are additional adhesions. If it comes to that, I will be heavy laden and full of regret. But for now, we will rejoice with my infertile sisters, one who is officially out of the club and the other two who are embarking on a very hard, but worthwhile journey, may God be with them every step of the way.