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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It’s Benign!!!

Hallelujah! Praise the Lord! It was not melanoma, or any variety of skin cancer. It was a blood mole–I had never heard of such a thing and google is a b*tch for never suggesting it could be anything other than melanoma. In fact google took my paranoia to a whole new level by informing me that in men nodular melanoma is usually on the trunk of the body, but in women it’s on the legs! I almost had a brain anneurism.

Here’s how it played out…

I cried off/on all weekend and had visions of what treatment would be like, how my family suffer through the same painful process that *I* endured when my Mom was diagnosed with terminal breast/lung cancer. How awful it would be for BG to have to grow up without a Mom–would she remember me? Would any of the memories be good ones? Would Mr. MLACS die too and would my good friend and fellow blogger Steph Mignon have to raise my kid??? So. Many. Thoughts. I was overwhelmed by all these thoughts and feelings.

I had a hard time getting to sleep and when I woke up Monday morning I wasted no time–I was going to ambush my dermatologist and insist he cut this thing off/biopsy it, and let me know how screwed I was. TODAY. I didn’t even make my coffee (you KNOW it’s serious) I just got in my car, called the dermatology office, and by some miracle they had an appointment with my doctor in 30 minutes, which was precisely my commute time.

I sat on the edge of my seat as I waited, my body buzzing with anxiety. And when the nurse called me back and asked me why I was there, I tearfully told her I’m afraid I have melanoma on the back of my leg. She looked worried and gave me a gown to put on. I was in suspense as the doctor walked in and I quickly moved to show him the black growth on the back of my leg. And he said…it looks like a blood mole but we’ll take it off and biopsy it. A blood mole. He told me to call if I hadn’t heard from them by Thursday.

After rebounding from the fear of cancer and the revelation of a blood mole, I sheepishly asked him if he had time to do my botox. He did. So I left the office with a hole in my leg and a face full of botox–I haven’t had botox since before my wedding in 2012 but my 20 year highschool reunion is coming up, I’m 38 years old and I have the money, so don’t judge me, ok?? Thanks.

Anyways, I called Mr. MLACS to give him the good news, and decompressed on the way home.

But then as Thursday approached and I hadn’t heard from my doctor’s office, my anxiety started to build. What if…

I called early Thursday (yesterday) morning but no one called me back. I thought “This is a bad sign”… I cried. I rocked back and forth. And I called again…the nurse put me on hold and I thought “Oh God, maybe she’s getting the doctor so he can tell me the bad news…” But she returned on the line and said gingerly “It’s a benign mole”. BENIGN. As in NOT cancer. A wave of relief washed over me.

But lemme tell you, this experience made a profound impact on me. I am slathering BG with sunscreen, even on her ears, because *90% of sun damage occurs during childhood*. I mean I used sunscreen and hats on her before, but now that she’s a threenager it’s a chore, as we do lotion on the face/neck and spray on the body. But I make sure she’s covered because it doesn’t take long to get a sunburn and just 5 sunburns in childhood DOUBLES your kids’ risk of skin cancer. So fight the good fight with the sunscreen folks.

As for me, I diligently use sunscreen but I also cover up a lot with hats and rash guards (shirts made of SPF50 material), since I am somewhat allergic to the sun these days. But I used to blow off moles that looked suspicious–now I am on high alert.

I’m also writing a piece for a local moms blog cautioning them to be ready with the sunscreen and also to take care to have themselves looked over by a dermatologist annually and pay attention to their skin. I feel like this experience was my “call of duty”, and I’m on it.

XOXO,

MLACS

 

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