Saying Good-bye To A Life-Long Dream + Update On What's Going On With My Health

"Acceptance of one's life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices." Paul Tournier

When I was a little kid I use to gather the family pets, usually a dog and two cats, and pretend they were my children. I'd reenact what I thought it meant to be a mommy, usually based off of what I witnessed from my own mom, who was an incredible mommy by the way (still is!). I'd spend hours in mommy land cutting the crust off their imaginary peanut butter and jelly sandwiches.

All I knew back then was no matter what, I was destined to be a mom.

I thought by twenty-two I should have been married and on my first child because that was what I knew. That was how it worked and that was how it happened for my mom. When that time came around and I hadn't achieved that I felt lost and like I had failed. 

As the years crept by and that story was nowhere near what my life looked like, the sadness got thicker and so did the feeling of failure. Then one day I met my now ex-husband and a twinkle of hope ignited within and I thought, "Yes, this is it. I'm finally going to be a mom."

When I couldn't get pregnant after two years of trying I once again found myself feeling as if I had failed and as if life had failed me too. Deep inside, in that place not many of us really like to go, I thought maybe there was something fundamentally wrong with me. Maybe I had made God really mad and I was somehow being punished and undeserving of having my own children. 

When my marriage crumbled at the age of thirty-four a little part of that dream went with it. I started to see the clock tick faster then it was already ticking. When doctors advise you at the age of twenty-four to have a full hysterectomy, your clock becomes more like ticking time-bomb. You are constantly feeling as if it's gonna blow. However, I was still hopeful that I had time. I had time to meet someone, fall in love and get the white picket fence and the family to go with it. 

I had to because I wasn't quite ready to answer the question, "If I wasn't going to be a mommy, who was I going to be?" 

But life is an interesting loop of mysterious experiences that sometimes just don't seem to make sense. 

Over the last four years I've experienced several big disappointments and have had to dig beyond my comfort zone and begin asking those harder questions. And now, as my body begins this next process induced from radiation, I have no other choice to begin finding the answers to the one question I've been avoiding the most. 

What I'm finding is an honesty and a resistance I really wasn't ready.     

I'm realizing that it's time to start saying good-bye to that life-long dream and life has quite literally thrown me into it. Ready or not, too bad!  

And as much as I tell myself all the optimistic things like, I really enjoy my freedom and I enjoy doing what I want, when I want to, I realize that I need to honor that life-long dream and mourn the death of it properly. 

I need to stop pushing down my feelings and thoughts and face them head on. 

I need to acknowledge and mourn that:

I'll never experience the excitement of peeing on a stick and seeing the pink positive slowly begin to form and I'll never nervously get to share the news with my partner, eager to see the smile form on his face and the joy twinkle in his eyes. 

I'll never know what it's like to feel the first flutters of life growing inside of me or watch my belly swell as I transition from normal clothes into maternity. 

I'll never know what it's like to rush to the hospital mixed with fear and excitement as I wait for my body to start a process that it was literally created for. 

I'll never lay in the hospital bed, exhausted and tired, waiting for the first sounds of my son or daughter's life echoing around me until they are safely in my arms, meeting for the first time. 

I'll never experience those first moments and that is a thirty-seven year long dream I have to mourn properly. And at times, that feels like a pretty heavy burden to bare alone. 

One of the shitty things about illness is you have no control over the wake of destruction it creates in your life. It rips through taking out whatever it damn well pleases and you sit back and just watch it do so. It's a little surreal if you ask me.

Yes, we do have control over how we perceive things and our attitude towards them. We all have those choices. And believe me, I practice these things daily but I'm human. A very emotional and deeply feeling human who can't paint away my pain with affirmations and positive quotes. If I don't feel this experience fully, I, Amanda Whitworth, will disappear into a numbness and fog that I couldn't live with. So, I choose to lean into the pain, hoping with every ounce of my being, that it's the true answer to healing.   

I also recognize that I always had the choice to walk away from radiation treatment. However, to live with that fear of whether the cancer had already started creeping up my lymph nodes into my lungs wasn't something I could live with. Radiation was, in my opinion, the lesser of two evils. Just how great of an evil well, I'm only just now learning the truth of what that means. 

But now, as others get to share their first images of the black and white outline of what's growing inside their womb and welcome their brand new babies into the world, I'm having discussions of a hysterectomy with my oncologist and wondering how many nights a person can go without adequate sleep due to a pain that wakes her every hour, before she loses her mind. 

And I know, believe me when I say I know, there are other ways of being a mother. I also know I am so lucky to be alive but please, I beg you, stop saying this to me. I know it's out of love and support but all it does is make me question my own emotions and feelings. It riddles me with guilt. It makes me feel like I need to hide the truth and that makes me feel ugly. That makes the anger I'm feeling inside bubble out of control until sometimes, I'm shaking so much I scare myself. 

I find myself keeping to myself a lot these days because I'm scared of sharing this pain with others. I see their discomfort with it and how no one wants to really talk about it or how they just want to fix it with saying things like, "There are so many ways to be a mom!" Or, "At least you didn't have to have Chemotherapy." Or, "It could have been worse!." 

Don't ever say these things to someone going through something like this. We already know this. Believe me. We are dealing with the guilt and confusion every minute of every day. 

But I'm determined to find my way back out of the darkness. It's just going to take a little time. But I'll find my way back, I promise.  

I just need to spend some time saying good-bye and getting use to the idea that I'll never get to have my own kids. I've got to find a way to make peace with that. Real peace. And that will take time. 

And that means some days I'm going to be angry as hell at everything and some days I'm going to cry so much that my body hurts but that is okay. 

This has been a dark few months for me but I've still been able to see glimmers of light along the way. 

On the heels of losing two wonderful human beings in one week to this horrible thing called Cancer, I know just how lucky I am. But that doesn't mean I don't get to mourn my own loss. That doesn't mean I don't get to feel my own feelings for what I'm experiencing. It doesn't mean that I don't get to feel the deep pain as I adjust to my new world, my new reality, in a body that is riddled with pain all the time now, one that doesn't feel like mine at all. Because I do. I do get that. 

I will find my way back to optimism. I will find my way back to believing in the good of all circumstances and believing that maybe this is happening so I can do something with it to help others. I will find my way back to doing some of the things I loved doing before even if it looks and feels different now. I will find my way back, I promise. 

But right now I get to properly say good-bye no matter how dark I go and I beg you, please let me. 

So what is next?

Being diagnosed with a rare cancer has been an interesting experience. It's really hard to know where you belong when you still don't even know where this started. However, we did narrow it down to being related to Lynch Syndrome. 

Back in May I underwent genetic testing and my results came back positive for MSH2 gene mutation which is what we expected all along. It's one of two possibilities with Lynch Syndrome (Hereditary Non-polyposis Colorectal Cancer) and kind of a scary reality to deal with. (click here for more info) 

So what this means is I have a higher lifelong chance of developing colon, rectal, uterine and ovarian cancer as well as stomach, small intestine, liver, gallbladder duct, upper urinary tract, and brain. 

Given that this is my second experience at such a young age, my doctor is taken this search very seriously and I am most grateful for him and his determination. I will always be vigilant and on top of my screenings and tests because after meeting a women in the waiting room of my oncologist office who was diagnosed with the same thing as me but much further along, a tumor had already formed in her Vagina and she underwent Chemotherapy and radiation, and none of it worked. Her tumor is resistant to treatment. Last week they attempted to do radical surgery to remove her uterus, ovaries, bladder, anus and colon however, when her surgeon opened her up, he discovered that the tumor was too close to her pelvic wall and there was nothing he could do. And it scares me to think that this could one day be me. 

Radiation has left the left side of my body riddled with pain and I'm trying to figure out what to do now as it's becoming a bit debilitating and chronic. I'm trying to find others who are experiencing similar issues so I don't feel so alone in this because most people who've had radiation that I've come across in real like have bounced back rather easily. As the weeks go on, I'm having a harder time walking and now, sitting and lying in bed. 

I spent my Halloween meeting with a Urologist at Moore's Cancer Center to discuss a procedure I had on Tuesday afternoon to look at lining of my bladder and then in the evening, I had my CT scan. No signs of cancer in my bladder.

I had my PET scan yesterday and now, I just wait for the results to see if this pain is a result of radiation or if the lymph node in my sacrum was actually cancerous and now has grown. 

I will say this. Radiation is no joke and comparing it to Chemotherapy as if it is a lesser evil isn't fair. It is all horrible and it all comes with experiencing great loss. 

Every morning I wake up in a body that feels eighty and it takes me all day to feel like I can move somewhat normally again. The pain in my back and hip are unbearable. I have a whole new perspective for those who have lived a long time with chronic pain. So much compassion and love to you because this alone could make a person crazy. Throw on how tired I feel all the time, like I can't get enough sleep, and the hormonal changes I'm experiencing, well, feeling a bit crazy doesn't even do it justice. And it's not something to joke about because to those of us who are experiencing it, it's really traumatic and scary and very isolating. 

And now a lot of my thoughts these days are of trying to come to terms with and accept the decision I'm making to have a hysterectomy because I'll tell you what, not having to worry about Uterine and Ovarian cancer on top of the rest, would be really nice. 

However, I have to fully come to terms with this on my own and in my own time. But I know one thing for sure. I don't want to die from this one day. I don't want to make the wrong decision only to have it come back to bite me in the ass. (No pun intended...okay, I had to throw in a little humor!)

I know all of this is leading me to something. I'm starting to see that light again. In between all the messy and dark parts I'm still experiencing, I see the twinkle in the distance and it's beautiful. 

 

 

 

 

 

Dealing with Infertility - My Way

fertile groundJust over a year ago I was told by a fertility specialist that I was infertile and he believed the only way I could get pregnant was through IVF. This news wasn't exactly 'shocking' as I always had a feeling that the complication from surgeries years before may have an effect on my ability to conceive and after a year of trying without success, I was starting to wonder. However, in the deepest place in my heart I knew that his cut and dry point of view and even 'professional' opinion may not be true. I'm not being naive by any means, but I also believe in the power of the body to heal itself with proper nutrition and holistic attention. And also,  considering the slew of tests my husband and I had done to show that my tubes were open, I had eggs, spermies were strong swimmers (and moving in the right direction), I felt he was jumping the gun just a tad bit, maybe even trying a little too hard to sell us a $15,000 dollar procedure.

After this doctor told my husband and I the news we tried one round of IUI, Intrauterine Insemination, which required me to be on Clomid and giving myself an injection that forced my body to ovulate on a specific day. To be honest, this went against everything I really believe in for myself but the desire to be a mom and have a baby took over my senses and I jumped into it as the exact day we were at the clinic was the first day I needed to start Clomid. The drugs made me nothing short of crazy, full of emotions and really sick. But despite all of that and more than anything, it just felt wrong to me.

When aunt flow came a few weeks later I bawled my eyes out, part of which I attribute to the hormones, and decided no more.  I needed to do this my way. The way that felt right to me in the deepest part of my soul.

I also realized that I had to come to terms with the fact that we may not have kids. It really isn't a given for anyone to be honest but as I approach my mid-thirties, I've had to start being really honest with myself, especially if I don't want to take any extra measures.

Even say those words, a whole year later, makes my heart sink deep into my stomach. A life without having children to me is something I've never even considered. True, I can always adopt but what I've always wanted was to birth a child of my own and that was what I felt like I had to mourn.

So I spent about nine months trying to convince myself that I didn't really need to have children. I told myself all sorts of things like, 'think about ALL the money we'll save" and "I can be an amazing aunt," but sometime in September I realized that I was lying to myself. I knew that I didn't want to take extra measures such as IVF or IUI but I also had been feeling 'off' for many years. My lack of sex drive, irregular periods, crazy PMS, those were all signs that something wasn't right in my body.

I decided to try a new natropath, one that I had heard great things about and made my first appointment. Upon meeting with them, I was immediately overcome with a feeling of hope for the first time in almost a year. First of all, this clinic has five naturopaths and they all work together as a team. I had two doctors in the room with me and as I told them my concerns, ailments and hopes, their excitement was palpable. They told me that I was their dream patient because I was so excited about healing from the inside out and after an hour and a half,  I left with a solid plan to begin the journey of healing.

It's all about detoxifying my major organs and getting my hormones balanced again. That was number one. They put me on something called Unda's, which are highly concentrated herbs that you take in a certain order up to three times a day. They also put me on a hormone balancing tincture that is also highly concentrated herbs that I take two times a day and I take homeopathic granules that I take twice a day at various stages of my cycle.

undasI'll admit, it's a lot and at first it was hard to stay on top of it all but now, it's like an old habit because I know it's working. The fact that for the first time since I was in my late teens I had a 28 day cycle made me literally jump up and down with excitement. With only being on the herbs and the hormone tincture for a month, my cycle suddenly was normal. For so many months the first site of auntie flow would literally bring me to tears but this time, I screamed with excitement and jumped up and down running into my husbands office.

I know, I know...only a holistic health coach!

I've dealt with horrible periods my whole life and finally it was normalized, lasting 3-4 days, light flow (sorry about the TMI) and basically no cramps. Um, can I say A-MAZ-ING!

Now, a month and a half later, I'm on a whole new set of number that are really intense. They are doing some major work on my liver, kidneys, colon and other major organs and I'm having some crazy detox symptoms but I just keep telling myself that this will pass and I'll be healthier and feel better than I have in a very long time. I already see the light at the end of the tunnel.

I know that some people balk at the idea of holistic and naturopathic medicine but here is the thing; we live in a society that wants a quick fix right now and the thing about natural medicine is that it takes time because it's repairing the damage and slowly healing from the inside out. It's incredibly powerful stuff and it does work. You just have to be patient and give yourself the time to really heal.

I am in no way criticizing Western medicine because without it, I would be dead. However, I think there needs to be a better balance and so many of our ailments can be reversed by working with your diet and a naturapath or some other specialist like a health coach.

I don't know if I will get pregnant but what I do know is that I am doing my body a huge service by really giving it the love and attention it deserves. I'm allowing it to heal, to be cleaned out and whatever comes from that is going to feel pretty great. And hey, if that's a baby, then that will be the icing on the cake.

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