A Mixed Bag

So I should probably start with an update from my last post–I celebrated my one-year stomaversary on October 17th. I did not get a cake, but we were on “vacation” in my midwestern  hometown so we could enjoy fall weather (since it’s still hot in the south) and so I could handle some business with my parents’ estate/my inheritance. We enjoyed ourselves–I caught up with my old friends, and BG played with their kids and had a ball. We took our labrador and he enjoyed going to “puppy camp” (doggy daycare) a couple times and every morning we’d bring him scrambled eggs from breakfast (we stayed at a Staybridge Suites hotel as it allows pets and it provided breakfast, which was delicious). I enjoyed going to my old favorite restaurants to get yummy gluten-free specialties. And really, we’d love to move back there at some point because it’s a lovely town.

But there was some bad stuff too.

At the 9th hour of our 13 hour drive, I received word that my dear girlfriend had passed away of complications with her cancer. I knew she was terminal, but she had been just fine the day before and no one expected this. I was heartbroken that I didn’t get to see her one last time. I did join her husband and some friends to celebrate her life, but they were all drunk and disorderly (which is why I love them) and I had Mr. MLACS and BG with me so we didn’t stay long, as they were heading towards a collective breakdown. I didn’t make it to her official memorial and I know some of the crew found that offensive. But funerals are for the living. Jen knew I loved her. And I reached out to her husband to support him. I cried for her–she was a beautiful person.

Then, my sister was (as per usual) a giant passive-aggressive, manipulative pain-in-the-ass. She never misses an opportunity to make my life difficult and piss me off, then play the victim when I call her on her sh*t. She likes feeling like she has some power over me. It’s pathetic. And I’m sure our estate lawyer needed a drink after dealing with our quarrels last week–he will be so glad to be rid of us. I don’t envy him. We have one item left in the trust and then it will be dissolved and we won’t have to “work together” anymore as co-trustees.

And then, we took a 2hr trip to a nearby city to do fun stuff with BG in the afternoon and have dinner with a dear friend in the evening. But while we were riding the train at the zoo…

Mr. MLACS was shocked by his defibrillator.

He was sitting in the seat in front of me so I didn’t see his face, but I heard a loud crack and saw him fly back in his seat–I knew instantly that he’d been shocked…but I thought it was static electricity or a loose wire on the train…it didn’t even occur to me it was his ICD (pacemaker/defibrillator device implanted on his heart). He was in shock but he didn’t lose consciousness. I figured out what had happened and a wave of panic started in the pit of my stomach but BG was right next to me so I couldn’t react. I stayed eerily calm (which is how I am in these situations–I become automated). No one else knew anything was wrong and since Mr. MLACS was conscious I didn’t feel the need to call for help–I mean what could anyone do? I didn’t know what to do–the cardiologist never gave me any instructions.

So I sat there in shock, rubbing his back until we got off the train. Mr. MLACS was not feeling well but he could walk. We had promised BG to get her something at the gift shop and it was about to close so we ran in there and suddenly I knew I had to call his cardiologist and figure out what to do next. So I did that, and they said take him to an emergency room to be looked at. And I had to make a choice–go directly to an ER in the city *or* drive the 2hrs back to my hometown where the hospital has his previous records from his initial heart failure and drop him at the ER and take BG back to the hotel (because ER’s are no place for children or pregnant women). So I chose option 2 and just tried to stay calm. Mr. MLACS was floored. And blaming himself–asking “What did I do wrong?” It was heartbreaking.

So luckily BG fell asleep on the ride and I didnt have to explain why we were dropping Mr. MLACS at the hospital. While he got checked out, I started googling…and now I am PISSED at his cardiologist. Because *this guy* acted like the goal was for Mr. MLACS not yo have any more episodes. But from what I read, even the youngest and healthiest individuals with an ICD are shocked *1-2 times per year on average*. Mr. MLACS has been shocked twice this year, and both times we thought it was a crisis situation and that it wasn’t supposed to happen and I blamed myself–maybe he is too stressed and he needs less expectations and responsibilities, while Mr. MLACS agonizes over what he did wrong.

But the truth is, that his heart randomly malfunctions. The ER found nothing in his bloodwork. Nothing in his EKG. Nothing in his x-ray. His heartrate was perfectly normal (he was sitting peacefully on the train) and for no apparent reason he went into V-fib (a dangerous arrythmia). His heartrate went from 60bpm to 324bpm in an instant, his ICD device shocked him once on the lowest setting, and his heartrate returned to 60bpm as if nothing had even happened.

There was nothing we could do to prevent it. There is nothing we can do to stop it from happening again at this point. Mr. MLACS is dilligently losing weight so he can qualify for a surgery that will try to pinpoint the part of his heart that malfunctions to cause the arrythmia and have it ablazed (burnt so it quits wreaking havoc). But there are no guarantees.

I take solace in statistics–he is statistically likely to survive 10 more years. He could live decades–he’s young and most of the people with ICD’s are 60+ years old, so they skew the statistics. But I hate that we have to live in fear of the next “episode”. I hate how much pain/frustration/anxiety/guilt it causes Mr. MLACS. I hate that I need to teach BG how to dial 911 as soon as possible. I hate that I worry when he is alone with her or when he puts her on his shoulders–that she could be traumatized by witnessing an event or hurt because he fell while carrying her. I hate that I worry about Mr. MLACS driving and that I really don’t want him driving our girls–could I ever forgive myself if I allowed it and something happened to my babies while he was driving?

This is a heavy burden. All this fear.

But we have to keep living. We can’t let fear dictate our lives. Yes, we have to be dilligent and cautious, but we don’t have to be consumed by fear.

So I exhale and keep going.

XOXO,

MLACS

 

 

 

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Trying To Keep Calm and Carry On

I had a hard time getting to sleep last night, after googling “melanoma” and desperately searching for “benign growths that look like melanoma” and coming up with nothing–just pics of melanoma–so either people don’t post their “I thought it was melanoma but it was just an XYZ!” photos, or, anything that looks like melanoma IS melanoma.

I used to go to tanning beds and the beach. Often. And I’d cover up my face because my parents had skin cancer on their faces (around the nose and mouth) and had scars where these were removed. I didn’t want scars on my face. But skin cancer didn’t seem like such a big deal.

I was so stupid.

God I hope I raise BG to be smarter than me, to make better decisions than me.

I mean I hope I get to raise her period, but what if I don’t? What if I die while she’s still a child? While she still needs me? What if it’s because I didn’t wear sunscreen and went to tanning beds?! What if she thinks I’m awful for screwing up her childhood with my cancer treatment? A kid shouldn’t have the burden of worrying about her parents dying…

Mr. MLACS had a bad Cardiology appointment recently. I didn’t even blog about it but I had BG with us because it was just a check-up. Then they told us he had been shocked by his pacemaker on March 24th–his heart rate was 300bpm (I didn’t know that 300bpm was even possible). We had no idea. And then at the appointment his BP was 150/110 and his heartbeat was irregular. I went numb. We had no clue he was in distress. The color drained from both of us. We were panic-stricken. Mr. MLACS cried. And BG was fully aware that something was very wrong. Kids are very sensitive and intuitive. She had flashbacks of when he was hospitalized. And we were at the appointment for 3 hours. Doc said Mr. MLACS *must* lose 100lbs as quickly as possible (he has been slowly losing weight but not very regimented). He is 6’6″ and about 415lbs, and he needs to be closer to 300lbs to qualify for surgery to find the part of his heart that is malfunctioning and causing arrhythmias. Or if he needed a heart transplant he doesn’t qualify because of his weight. This appointment was April 22nd and since then Mr. MLACS has been working on his diet. We dropped $1,000 and he is getting a nutrition/exercise plan from an excellent trainer friend of mine.

So you see I’m already riddled with anxiety. My dad just died–both my parents are deceased. I’m stressed dealing with the estate (my sister). I am just 6 months out from having had my total colectomy and still learning to live as an ostomate. One of my good friends just had his big toe amputated due to melanoma.

And now I have this large, inexplicable black growth on my leg. I literally want to dig it out myself, I loathe it so much right now. I’m so freaked.

But instead…

I slept in (because Mr. MLACS knew I was up fretting about this melanoma thing). We went to home depot. I took BG over to play with the neighbor girls on their blow-up waterslide. I fed her lunch and put her down for nap. I’m trying to “keep calm and carry on”.

I’m trying So. F*ing. Hard.

I don’t want to alarm BG. And I don’t want to taint her life with my fear/anxiety/depression. Which is very difficult, since we are together 24/7.

I’m calling the dermatologist and being seen first thing in the morning, and no matter what they say I’m having this thing removed and biopsied.

But in between, I am trying to live, laugh, and love. I love my family SO much. I love my BG with everything I am. And if it’s cancer, I’ll fight. 20180417_095910_Film1.jpg

XOXO,

MLACS

 

What If It’s The “C” Word?!!

I have a growth on the back of my leg and it looks like nodular melanoma. I felt it and then really looked at it tonight. I stopped short of taking a photo because I want to sit here and pretend it’s not that bad.

But I’m terrified.

I noticed it months ago and was alarmed but never had it looked at because *ALL THE BAD THINGS* happened and then I was just focused on trying to get better and doing all the things I love with the people I love…I forgot about it. It’s bigger now, I think.

And I’m at higher risk because I took Humira last year. Both my parents had melanomas removed from their faces too, but I don’t think it was nodular melanoma.

I’m scared. Any words of encouragement or wisdom?

XOXO,

MLACS

 

It’s My Birfday!

Well, it was my birthday today (Dec 16th, I know that wordpress is going to post this as the 17th but here in the the USA, Central Standard Time, it’s still December 16th–my birthday).

I haven’t written in the last few days–because I’ve just felt inexplicably awful and I had nothing to say except “Help”. I had begun to wonder if I would ever feel good again. Everything made me cry–I would get a lump in my throat and just burst out in tears, and the tears would quickly fade but then I would be left feeling exhausted, confused, and unrelieved. Everybody seemed to hate me–I interpreted everyone’s actions/inactions in the worst possible way (example: my friend didn’t text me to confirm dinner plans in the afternoon on Saturday so I assumed he had found something better to do (because I am SUCH a boring loser) and then he texted me around 6pm and asked where we should go–I had agonized over nothing). I have been consumed by anxiety and depression in a way I haven’t been since I started medication 7 years ago. And I was SO stressed thinking “My depression and anxiety is going to RUIN all the potential of IUI #2”, but I couldn’t make it stop. This feeling of desperation about screwing up IUI #2 was the worst. It’s worse at night (dark, cold, lonely) and I found myself awake until 3am every. night. this. week. It didn’t seem to matter how many “warm fuzzy” Hallmark Christmas movies I watched, I couldn’t shake my misery.

Until Today. I stayed up late last night tidying my house because I wanted to wake up and not be irritated by all the stuff on my “to do” list that still wasn’t done and then having to look at my house in disarray. So I fixed everything before bed. And I woke up excited to go see my friend (the acupuncturist) Star to begin treatment this morning. I brought her a cute little treat bag of chocolate dipped oreos that I had sprinkled with crushed candy cane (as I’ve previously suggested (click here) it’s always good form to bring treats). I felt relaxed the moment I walked in the door and saw Star’s smiling face. Star took time to thoroughly go over my medical history, and then she began treatment with an interesting technique. I don’t know what it’s called, but she had me hold up my right arm in front of me, and she asked my body (not me, my body) a series of questions about what is bothering it (spleen? stomach? kidney?) and when my arm would ‘give’ when she pushed she would consider it an answer from my body–my body said my kidneys and stomach are weak/having issues. Then Star had me hold up my hand and asked my body if events in my life had caused my weaknesses, and at what age these occurred. My body replied that I had traumatic events at ages 12 and 22, which I can only assume were related to my very piss poor body image/disordered eating–at those ages I literally hated my body and wanted only to be thin, and not just thin but pin-thin (which is not even a possibility for me, I know, because I eventually did become very successful at my eating disorder and started under-eating/over-exercising and even at 10% body fat the smallest I got was a size 4/6). So, I told Star what had happened at those ages, and then she tapped down my spin and pushed those things out of my body–I felt a physical release. Next, I laid down on the table and Star placed the acupuncture needles at various points (not the first time I’ve had acu) and told me to relax and call for her if I needed her. The needle that was placed to detoxify my kidneys kept falling out–which intones that I am overwhelmed with impurities. Toward the end I could feel the toxins begin to release into my blood stream and I became quite uncomfortable. But when I sat up after the treatment, I KNEW that good things were happening–I knew I was in the right place and that Star was the right person to help me on my journey to a baby. I appreciated that she focused on my fertility too! She gave me suggestions for books and supplements, but without any pressure. I have smiled all day–genuinely smiled. And laughed. This huge tension/stress knot in my left shoulder has all but disappeared and she didn’t even touch it. I feel lighter and more energized. It’s ah-maz-ing. I just wish she took insurance! But she’s worth every penny.

I had a good rest of my day too, gluten-free pizza for dinner with my family and gluten-free cupcakes made for me by my sister. Lots of well-wishes and happy birthdays on facebook. And a lovely little card from one of my IF/RPL soul sisters, as well as a book of fertility philosophy from yet another IF/RPL soul sister arrived in the mail 🙂  I feel so loved and nurtured, like I was falling through the sky but I’ve now landed on a cloud. I feel like, no matter what happens with IUI #2, I think I will be ok (but I’ve only just begun the hormones so no promises).

I have to give a shout-out to Mr. MLACS as well, because he’s been a complete gem. While he can’t be here in the flesh to comfort me, he has made himself very accessible across the miles and has answered every phone call and listened patiently to every meltdown. He has not allowed me to worry about finances. He had a lovely orchid plant sent to surprise me the other day (I love Orchids)! He’s giddy about Christmas and has been shopping online and loads of boxes have been arriving from Amazon.com, mostly wrapped, mostly gifts for me. And my most favorite thing: it’s a birthday tradition for me to go to the Nutcracker ballet for my birthday, and he bought us tickets and we’re going to see a performance on Friday in the city (where I have to pick him up from the airport). I love having something to look forward to!

In closing…as I was cleaning/organizing my house today, I found a “rainbow maker” that my Dad gave me a couple months ago when we first moved here. I LOVE prisms, those crystals that project rainbows onto the wall, and the one my Dad gave me has a little solar panel that projects the light onto the prism…I hung it in my bedroom window. I sighed wistfully and hoped that this means I’ll be holding my rainbow this coming year. And I didn’t even cry. XO

86% More Hopeful Than Yesterday

Click HERE for the Attain Success Rates webpage….

As I’ve been (obviously from my ‘FML’ posts) fighting anxiety and depression like it’s my job (thanks hormones) and I’m determined to see the mf*ing sunny side of life again, I began searching for statistics. I don’t expect things from God–I pray more for understanding, acceptance, and comfort than I do for outcomes–so when I want to believe that something will go my way I look for a statistic that is in my favor. And as luck would have it (or God, maybe God was throwing me a bone here) I found some very encouraging statistics via Google search! I would like to thank Attain fertility for providing me with HOPE that I may yet find success with IUI’s…because according to Attain there is an “86% chance of pregnancy with multiple IUI’s”. It doesn’t say percentages like 40% pregnancy within 3 IUI’s or 60% pregnancy rate within 6 IUI’s…and I don’t f*ing care if this 86% includes people that have had 100 IUI’s to finally get pregnant. Obviously this statistic does not account for live births, but before I even worry about that I need to believe that these IUI’s and all the mf*ing hormones are going to open the door for me to begin to worry about the RPL factor…This 86% statistic calmed me and helped me to stop hyperventilating about this upcoming 2nd IUI and stressing about the future (IVF, childlessness), and I will be forever grateful to Attain for posting this (possibly fabricated) statistic so it was there for me to reference in my time of need. **And if this is a skewed statistic and your RE tells you it’s BS…PLEASE DON’T TELL ME…I need to believe in this like a little kid needs to believe in Santa Claus…I’m clutching this statistic like a little safety blanket and if you try to rip it away from me I’ll bite you. XO

CD1

Yep. I got the call from Dr. Angel that my beta was negative and stimultaneously felt the unmistakeable pain of AF making her appearance a day early. It’s actually a blessing in disguise to be moving on from grieving to hoping so seamlessly. Also, that would partially explain why I was so morose yesterday–PMS. But y’all really showed up for me yesterday and I truly felt embraced and comforted by your kindness, warmth, and tenderness–I really felt our kindredness and unity and it gave me strength when I was weak. You are such amazing women and I’m privileged to know you–I don’t need to know your names, addresses, or occupations–I know the best part of you already–your brave hearts. Bless you all. XO

No Pressure…BUT…

Dear friends, this is a very special post; thanks in advance for your patience because it’s kind of long.
XOXO,
MLACS

My Mother owned and operated a licensed home daycare (as in, a daycare in our house) for 27 years—until she was diagnosed with terminal Breast/Lung Cancer in 2006. She was like the Sun and we (our immediate and extended family, friends, and the families she cared for) had always depended on her for sustenance–she was the matriarch. We all withered with grief when we realized her cancer was terminal and her days on this earth were numbered. The docs may as well have said Armageddon was upon us, because that’s how it felt. She was so graceful though—she actually comforted all of us, while carrying on her life and making sure she appreciated and enjoyed her remaining time on Earth (despite the rest of us falling apart, wallowing, and fighting amongst ourselves).
She made sure everybody knew how much she loved them—even our (mine and my younger sister’s) unborn children. For her remaining 3 years, my Mother lovingly prepared ‘hope chests’ for our weddings and for our future babies. The baby boxes are full of clothes, toys, Christmas ornaments, quilts…lots of little things she wanted them to have. I haven’t had the heart to open my baby box, but my sister filled me in on the contents. Our beloved Mother passed away on June 2, 2009, in the house that SHE had made a home. Are you crying yet? Me too.

A few months before my mother died, my sister demanded that her now-husband marry her so that our Mother could be present at her wedding (not that Mom was pushing us to get married; she never expressed any opinion about us getting married—but impressed upon us to be independent).
I had no prospects, and it was the furthest thing from my mind at that point. I was a rolling stone. However, when my mother passed I realized that I was stuck in a rut and I began to ponder how to manifest my destiny. I was 30 years old.

I believe my dear departed Mother has had a hand in how my life has unfolded since her passing. Here’s where this post gets interesting….

Each year since my Mother’s passing, something BIG has happened on or around her birthday, September 26th. I’m talking, life-changing events. I refer to them as “gifts”, because they have all changed my life for the better.

Here’s the list of “gifts”, in order:

1.       Kitty—October 6, 2009

I was not ‘in the market’ for a furry friend. But on an otherwise ordinary day, I walked out of my apartment to smoke a cigarette (yes I quit) and this kitten started circling my ankles. My heart dropped down to my feet—I had butterflies in my stomach. I invited him inside my apartment, one thing led to another, and now we’re inseparable. Totally caught me off-guard.

2.        Mr. MLACS—September 26, 2010 (Mom’s bday)

I was working in a bar to make ends meet (my degree was as useless as toilet paper) and my good girlfriend/co-worker got me trashed (and I let her) because it was my Mom’s birthday. Mr. MLACS walked into the bar as my shift was ending, and bought me a sugarfree redbull. As a general rule I didn’t give my number to guys I met at work, but he was a gentleman and I was driggity-drunk-drunk, so I ‘bent’ my rules and told him he could take me on a date. Again, butterflies. I had no idea that he was my future husband.

3.       Marriage—September 27, 2011

I had already planned a spring wedding and I did not want to get married early. But, my Ulcerative Colitis was “flaring” out-of-control and I had no health insurance. So in the interest of not starting off our marriage buried in the debt of medical bills, Mr. MLACS and I were legally wed at a courthouse in some po-dunk town near where we were living at the time. I felt the butterflies.

4.       Quit my Sh*tty Job—September 29, 2012

Mr. MLACS and I had just moved to a new city, and we were broke from the move (his company screwed us) and from paying for our (awesome) wedding. I desperately searched for a job, and I landed one in a medical office. But it was TORTURE. I was totally exploited, and I desperately wanted more for myself. I had ‘butterflies’ when I walked in the office and told them “today is my last day, mail me my check”. And then I self actualized and enrolled in a prerequisite class I needed in order to follow my destiny: to become a Nurse (after holding my Mom’s hand through terminal illness, having my own chronic illness, and taking care of kids all my life, it just “clicked”.)

The “butterflies” feeling I speak of is akin to fear, yet different. I think it is spiritual arousal, as interpreted by the body. While my mind did not recognize the significance of these “gifts” at the time, my soul did.

I still turn to my Mom when life overwhelms me. I have a sort of “shrine” to my Mother in my kitchen—a little alcove with pictures of her, and when I want to connect with her I light candles in my kitchen and I talk to her (usually sobbing) about what’s going on. I’m not one to ask for favors from God or my Mom, because I know (from experience) that what I want isn’t always what I need, and that when I leave room for possibility in my life, wonderful things happen that I couldn’t have imagined. So you see, I’m torn this year: I don’t want to request a “gift”, but there’s only ONE thing I desire; there’s only one life-changing thing I can imagine….

I’ve done my part, too. I’ve taken every pill and assumed every position. And now I’m (post-ovulation) waiting to exhale…

To add to the suspense, we’re moving (from the Southwest) back to my hometown (in the Midwest). The movers are, of course, coming on Thursday, September 26th to pack up our house. It’s only temporary, maybe a year (long enough to have a baby) or two at most. And I’m lucky to be able to surround myself with friends and family after a year of tumult and heartache (chronic illness & miscarriage). But I hope that moving back to my hometown is not my “gift” this year.

No pressure Mom…BUT…I’d be most grateful if you’d give me a reason to open up that baby box…

My Mom reminds me of the story "The Giving Tree" by Shell Silverstein

Shel Silverstein’s “The Giving Tree” reminds me of my Momma