Tuesday, September 18, 2018

Long Overdue Update

Man, it's been a long time since I've written or updated my blog. Things have changed, but things have also stayed the same. 

Rachel, my miracle baby, is closing in on 9 years of age this November. I just passed my 9 year cancer-versary in July. I've been unemployed for a long time. I'm still fighting an ever changing battle with my health, although the battle is mostly invisible. It's this last aspect that is most troubling. 

My health is a puzzle. To the observer, I'm a healthy, normal, fit-looking 30-something woman. From my point of view, I'm s quagmire of odd symptoms, never-ending pain, and constant struggle. You see, cancer was the easy part of my journey. Chemotherapy was a cake-walk. Even the horrendous extended and numerous surgeries were nothing compared to my daily life now. My Thoracic Outlet Syndrome and nerve damage has not loosened its grip on me one iota. Instead, TOS invited its friend Chronic Migraine to visit. Like an uninvited and oblivious guest, chronic migraine has over stayed its welcome and tortures me on a daily basis. 

Chronic migraine is a condition that baffles even specialists and neurologists. They don't know what causes it, why it happens, who it will strike, and when it will go away. All they know is that diagnostic tests are useless and medication is trial and (mostly) error. It's been years since I've woken from a nights sleep without a severe headache. These headaches are accompanied by nausea, vomiting, disorientation, numbness/tingling in my face, and my new favorite (sarcasm font needed) symptom loss of consciousness. Yes, that's right I pass out with little to no warning whether I'm actively engaged in an activity or laying down. I spend most of my days in s darkened bedroom (black out shades, doors shut, and no lights even seeping under the door cracks). When I am able to be out and about, I still wear dark sunglasses and walk a bit unsteadily. I'm not allowed by good conscience to drive since I frequently (as in daily) pass out. Even a trip to Church for Sunday Mass is often out of the realm of possibility for me. 

It's hard to live life this way. There are some days that I almost wish I could have been strong enough to refuse treatment, give Rachel life, and let the cancer take me... However, I then look at my little family of 4 and see that I'm still needed and wanted. I still school my children-Simon is 10 and in 5th grade, Rachel is 8 and in 4th grade. My husband, Andrew, still works on cars and needs me as his 'Dumbo feather'. This year he and I will have been married for 11 years! We've made it through things that some couples never see and we still love each other and stick together. 

Rachel and I have been lucky enough to have a benefactor that bought us a horse to enjoy (more on this story at a later date). Rachel couldn't have a regular horse because of her life-threatening allergy to horses, but loves them very much. So I researched and found that American Bashkir Curly Horses are hypoallergenic. And, since horses are like potato chips in that you can't have just one, we now have a second Curly to keep our first company. Rachel is doing wonderfully learning to ride her horse, appropriately named Faith. I can only cautiously ride for a few minutes to demonstrate something for her, but those few moments are moments of true freedom and joy. 


All in all, even though life is still full of lemons, I'm learning to make lemonade, lemon tarts, lemon meringue, basically anything out of the lemons life hands me. 

Wednesday, April 27, 2016

What Do You Do With Gift Lemons?

There are some days that just don't end well. Today was one of those days. You see, I've been struggling since 2009 with the 'gifts' breast cancer gave me...

Initially, it was the cancer itself, diagnosed while I was pregnant. That was trouble in and of itself. However, with wonderful family, community, and prayerful support around the world, I overcame the scourge of BRCA1 breast cancer while pregnant through chemo during and after my successful pregnancy. It was difficult, but as the saying goes, "if it doesn't kill you, it makes you stronger." 

Fortuitously, the strength I gained from that battle helped me in my next battle - the battle in my work-place. I've tried not to mention the struggles I had there too much in public for my own protection, but suffice it to say that my superiors were not thrilled that one of the 'gifts' cancer gave me -- life-long nerve damage and Thoracic Outlet Syndrome. Prior to my cancer diagnosis, I received written commendations for outstanding work from both inside and outside my workplace. However, after my diagnosis, treatment, return to work, and subsequent search for relief of the 'gifts' from cancer my superiors began to complain of my sometimes sporadic attendance - even though it was covered by FMLA and/or doctor's notes. Technically, my work was on the same level as before. I know this because in that line of work, every report undergoes peer and administrative review prior to completion. There is also a Technical Leader, a person that ensures compliance with written protocols and proficiency testing. For about 3 years I did everything in my power to maintain my job and my integrity. Yet, when the time came, it didn't matter what *I* knew, but what my superiors wrote and believed. So I was terminated with black marks on an otherwise spotless record. 

During this struggle with work, I was also fighting on another front -- one of physical pain and frustration of not knowing what caused the pain. After I healed from my mastectomy, my chest wall, collar bones, neck, shoulders, and arms ached all the time. Those areas felt like I had lead weights pulling them down all the time. On worse days, I had shooting pain from my neck down my arms and into my chest. Sometimes the pain would get so bad I would be unable to move my head, neck, and arms or even take a deep breath. On those days, Andrew would have to help me dress and/or wash my hair. Days like that would bring me to tears and a defeated state of mind. I went from doctor to doctor trying to find relief. Different doctors had different diagnosises and treatments. Finally, on a trip back to Houston, in the Supportive Care Unit, one of the doctor's got me on the right track. However, even then, it wasn't a simple fix. In fact, I'm still struggling with the same root issues, nerve damage and Thoracic Outlet Syndrome, and issues that are aggravated by it today 4 years later. 

Back to today ending poorly... I've been going through old paperwork that dredged up all these memories. I found the mountains of paperwork about my diagnosis. There are the skyscrapers of paperwork that are even more depressing about my workplace struggle. I still feel the same mixture of fear, dread, betrayal, and humiliation from the way I was treated there. I'm sorting through all this paperwork for something that may or may not be beneficial. Yet, right now, all this walking down memory lane reminds me of the bad things I've lived through. 

In a way, though, it's also a reminder of the little miracles in life. Rachel is a healthy 6 year old getting ready to enter the 2nd grade in our homeschool! I just re-read the reports of the 1.7cm mass that was present in ultrasound immediately after Rachel's birth, but disappeared thanks to prayers around the world by the time I got a PET scan a week later! I'm still cancer-free as of my check up last week! Without my income, we still have our home and food in our bellies even though times are tough. Since I no longer have the added stress of work, some of my symptoms have gotten better. So, I guess, today hasn't ended that poorly after all. I just need to make lemonade instead of sucking on lemons. 


Monday, April 11, 2016

Belated #FMF: Whole

What does it take to feel whole again? For every woman it's different. Heck, for some women the answer varies by the moment. However, a big part of the journey through cancer is beginning to feel whole again. If you're like I was, you chose to go whole 'hog' and remove as many of the body parts that were trying to kill you that you could possibly live without... For me that meant both breasts, both ovaries, both tubes, and my uterus. 

Is not obvious to anyone that I'm missing those internal organs that made me the life-giver in my relationship. However, I know they're missing and my doctor can surely tell you that they're missing too. The most noticeable ones are of course breasts. They're difficult to reconstruct on some women-me for instance-for reasons that are difficult to enumerate. However, are they really necessary to feel whole? Many women choose not to have their breast reconstructed. They'll you that they still feel very whole because it is more about the support you receive and how you feel about yourself. 

Stop.

I'm a little late joining the party, but some bloggers around the blogosphere are participating in "Five-Minute Fridays" #FMF with an assigned topic and the titled 5-minute timeline. Since I can't ever do anything on time, I'm running behind, but I plan on trying to participate in this link-up party. FMF writers at Kate Motaung's blog. What a fun way to challenge your writing!


My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!