Rewrite The Scars

My friend is a girl you might know. 

At one time in her life she was a world renowned wedding dress designer who was featured on Say Yes To The Dress.

I was invited to provide a cake for a "Meet the Designer Trunk Show" at a bridal salon in Delaware. 

That's how we met. 

She looked at the cake I'd created for the event and said she felt like she could create a dress based on the cake. 

I wanted to jump out of my skin with excitement. 

I was so nervous and she was so gracious.  

I was immediately taken by her genuine authenticity. 

Seriously, she may be one of the nicest people on the face of the earth. 

After that event we stayed in touch and I did another event with her the following year. 

A little back story here: Nearly 15 years ago this amazing woman signed a contract with a wedding dress design house that gave her her own named dress line! 

It was a dream come true for any designer. 

Because she is a glass half-full type of person, was so excited and flattered that it never crossed her mind that someone would do something that would cause her harm and did not have a lawyer review the contract before she signing.

When she asked questions, they said she could renegotiate any potential issues. 

Well, that turned out to not be true. 

Not only did they not allow her to renegotiate the contract but they stopped paying her, took her social media accounts, any sketches of any type of dresses and they took her name. 

Yes, you read that correctly, she is no longer allowed to use her birth name. 

Evidently it was written into the contract that she signed. Yes, she signed it but, in my opinion, there is a special place in hell for businesses and owners who operate so unethically. They knew what they were doing when they put that in there in the first place! 

Anyway, fast forward a few years, many thousands of dollars and many court battles later...She still cannot use her name, she is barred from working in the wedding industry for five years because of the non-compete clause but she did get her pictures back from her social media accounts. 

And... she has a new name. 

She is Cheval. 

She is powerful, strong, kind, loving, sweet, wonderful, smart, funny and a genuinely good person. 

She is also now a shoe designer! 

I know, right?! 

Her shoes are amazing! Not only are they beautiful but I wore a pair, right out of the box, for her launch party and they were stupid comfortable! 

Once I decided to forego reconstruction after my  double mastectomy I made the decision to get a tattoo. 

She is Cheval

I reached out to Cheval to see if she'd be interested in designing it for me. The only thing I told her was that  it had to have a pink ribbon in it and I wanted florals.

She did the rest. 

The design is amazing! It needed a very minor amount of tweaking to make it perfect. I was so excited when I got the first drawing that booked the appointment months ago. 

Today I had my first sitting. 

Some parts hurt like a mother f$cker and some I didn't even feel. 

When they cut off the boobs I lost a lot of sensation in those areas of my chest but the center was crazy painful. 

Getting the color done will hurt too but..

It's already worth it. 

Once my tattoo artist, Aly was finished and I looked in the mirror I almost cried. 

For almost a year and a half all I've seen was scars. 

Today I saw beauty. 

A beautiful design created by one of the most beautiful and resilient poeple I have met in my life. 

I am blessed to call her friend and honored to wear her art. 

                                                You can follow She is Cheval on Instagram 

What's Your Worth

You are not your hair, your ass, your boobs or any other physical trait. It's something that we all need to take to heart and please...don't raise your daughters to believe that their looks are more important than their character.   

A person's self-worth is not determined by their looks. 

If you have defined yourself by your boobs and your hair, get breast cancer and lose both, you will have no self left. 

Not only that but we are so much more than our looks! 

Do you know who you are? What you stand for? What matters most to you? What you are willing to walk through fire for? 

Seriously, cancer treatment is difficult enough without having to redefine who you are in the middle of it. 

Personally, my boobs were too small to be a defining factor and honestly, my hair always irritated me. 

For me, losing both was not a hardship. 

Unlike most other female cancer patients I have met, I liked being bald...especially in the summer. 

Hair is hot. 

I've suffered from hot flashes for seven years and not having hair was such a blessing. It's been a year since my last chemo so it's grown in but I'm still dealing with the chemo curl (feels like standard poodle hair) and once again, I'm sweating. 

But I digress...

Let's talk about self-worth. 

Self-worth and self-esteem are not the same thing. 

According to the University of North Carolina Wilmington "Self-worth is the internal sense of being good enough and worthy of love and belonging from others. Self-worth is often confused with self-esteem, which relies on external factors such as successes and achievements to define worth and can often be inconsistent leading to someone struggling with feeling worthy."

If you want people's take-away to be, "she has a great rack" you are concentrating on the external factors and headed for trouble. 

Unless you have money like Dolly Parton and can get nipped and tucked whenever you feel like, time and gravity are your enemy. 

If you are judging yourself based on your looks your esteem's days are numbered.  

How many times have you heard things like, "Looks can be deceiving"? Just because something looks good doesn't mean that it is. 

Pretty does not always equal good. 

We've all known the person who thinks they are better than everyone because they look better. All of my high school years come to mind. Often the "mean girls" are beautiful but treat others as if they are lesser beings because they aren't as physically attractive. 

Well ladies, just wait until that 30 year reunion! 

A person with a well defined self-worth will not tolerate being treated poorly by others nor with they have to knock others down to elevate themselves. 

Someone with low self-esteem will make poor relationship choices, sabatoge relationships and settle for a bad relationship as a trade for financial security. 

Does this mean that you should never tell your daughters they are pretty? No! 

https://www.psychologytools.com/self-help/low-self-esteem/

Should you emphasize brains and accomplishments over looks? Absolutely! 

According to Cancer.gov 12.9% of the women born in the US will develop breast cancer. 

The number one risk factor for developing breast cancer is... Being Female! 

Yup! You read that right. 

Being a woman is the greastest risk factor of developing breast cancer. In fact, 1 in 8 women will develop breast cancer. 

Think about eight women closest to you...have any had breast cancer? 

Less than 5% of the women who develop breast cancer are linked to genetic mutations all the rest are environmental. 

From 2004 to 2018 breast cancer rose .3% which means that 502,500 more women were diagnosed than in the decade before that. 

Could be that early detection is better but...so much of what is allowed in food, cleaning products and even the water supply is also linked to cancers. 

According to a study published in the National Library of Medicine, "The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) regularly publishes lifetime risks of being diagnosed with each type of cancer.2 According to these estimates, the lifetime risk of all invasive cancers in the USA is 42.05% and 37.58% for men and women, respectively."

Those are some pretty scary numbers! 

While not all cancers cause external physical changes, many of the treatments do...especially in the case of breast cancers. 

Defining who you are by your physical traits is already a slippery slope to begin with but ladies, with a 37.58% chance of getting a cancer and eduring a treatment that includes chemo, women who have been raised to believe that their worth equals their looks are subject to even greater psychological damage. 

The emotional and mental battle that comes with battling cancer is already hard, let's not make it worse by raising daughters who have a badly defined sense of self to begin with!

Not A Dream

If I didn't have the scars to prove that I had breast cancer, I'd think the last year of my life was just a bad dream.  

I know that I had cancer. I know that I had a double mastectomy. I know that I endured chemo and a year of Herceptin infusions.

But now that it's over, it feels like it was just a long, strange, bad dream.  

For more than a year cancer consumed my life. 

And now it doesn't...at all. 

From the day I found the lump to the day I got my port out, there wasn't a day that went by that I didn't think about it or have to plan for my next appointment/treatment/surgery...whatever. 

It was all-consuming. 

I went from "knowing" the term breast cancer to having a working knowledge of the types of cancers, grades and stages. 

The learning curve was steep but necessary. 

I didn't just need to know that I had cancer, I needed to understand the treatment and the reasoning behind the procedures. I trusted my doctors but needed to verify what they were doing as well. 

The time between diagnosis and surgery felt like an eternity. 

In actuality it was approximately six weeks. 

Time felt like it was dragging. The nagging fear that the cancer would rear up and consume my entire body while I bounced from appointment to appointment was real and terrifying. 

In the blink of an eye life turned into a nightmare. 

Think about it, I had showered, dried off and was applying moisturizer when I found a lump. I immediately called the doctor and began a whirlwind of appointments. 

After the diagnosis life became a blur of tests, scans and consultations. 

Once they confirmed that it was cancer I was ready to have them cut my boobs off the next day. Hearing that there is something growing in your body that wants to kill you is terrifying. 

Not only did I want the cancer out of my body but I have a family, a life that was going on around me and a business to run. I needed to get treatment overwith so I could move on. 

But, cancer is really inconvenient. 

My focus went from family and business to diagnosis, testing and treatment and recovery. 

For 12 consecutive weeks, I underwent chemo and 48 hours later (once the steroids wore off) I would spend a couple of days in bed. After that I would be good for a few days and then we'd repeat the process. 

Lather, rinse, repeat. 

There is a lot that went on around me as I endured treatment after treatment. Most of which I don't remember because the chemo disrupted my brain. But, I do know that so many people jumped in to lend a hand. 

I will be grateful to those people forever. 

Cancer treatment is hard. It's exhausting and sickeness inducing but, if caught early enough, can also be life-saving. 

Early intervention is key. 

If you are reading this thinking, "I really need to schedule that mammogram." Stop what you are doing and make the appointment. 

There is no excuse that will justify jeopardizing your life. 

Sometimes

Sometimes life is great and sometimes it sucks beyond words. 

This past year has been both. 

I've experienced the love and care of friends in ways that are indescribable. 

I've also experienced pain, suffering and loss. 

It's been a crazy rollercoaster! 

While being diagnosed with cancer was terrible, it did not come as a surprise. My family history of cancers is horrifying. 

The surgery itself wasn't bad but the drain bags were miserable. the one on the left wasn't horrible but the subcutaneous tube on the right sat on a rib and rolled back and forth when I moved. It hurt for two weeks after the drain was removed. 

Then there was the car...The Ford Escape that became the bane of our existence! Ford corp did help but they truly should have footed the bill for the whole thing. It was a collosal nightmare. 

And, don't forget that I hit a deer hours after I borrowed a friend's truck while the Ford was in the shop. 

Yeah...it was a year of memories all right. 

But, there was so much good. 

My openness about my experience led so many women to have their mammograms not the least of whom was my sister. 

Has she waited she would be dying today rather than being a cancer survivor. 

Her one and only mammogram found a lump. The biopsy confirmed her cancer and her life then switched to doctor appointments, consultations, chemo and reconstruction. 

I have mentioned my family cancer history in the past, I wasn't being dramatic. 

My family tree is one headstone after another of people who died of cancer. Fortunately, thanks to education and awareness, many of us have caught it early and are survivors rather than victims. My mom, sister and I are all cancer survivors but...we each had a different type of cancer and do not have any of the genetic markers for breast cancer. 

Soooooo.... Be very careful about what you eat and the water that you drink. 

Personally, I think it's only a matter of time until the scientists either find another DNA link or they discover the combination that causes the breast cancer. Genetic testing for BRCA 1&2 has only been around for 20 years. The strides in genetic testing since then are huge! 

Unfortunately, the biggest detector is the mammogram. 

Yes, it sucks. Yes, it hurts but death from something that could have been stopped early is so much worse. 

So, ladies...Tits up! Get in the damn machine...Just do it. 

Let's get back to the good shall we? 

What was good about last year? 

Hats! 

Normally I am not a hat wearer but, my friends started sending me these awesome hats for when I lost my hair and I started wearing them on chemo days. Then, I continued every three weeks for the Herceptin treatments. 

It took on a life of it's own. 

It became so much more than just a hat. 

I was giving people a temporary relief from their misery. 

And, let's be honest here, chemo is misery. Despite the good-natured humor and insanity that is Vanessa, there were days that I couldn't lift my head off my pillow. I would just sleep or lie in bed and cry. 

The love and compassion I received from friends and family was astounding. It helped me to push through the crap days and appreciate the good ones so much more. 

Not only was I able to make the other patients smile and laugh but the staff laughed at my antics. 

Let's talk about the staff.

From the doctors and nurses to the front office people the shear number of people in the oncologist office and infusion center is amazing. 

While there are many success stories like myself, there are so many others who are there for paliative care. Their days are numbered and they are receiving treatment as a means to delay the inevitable. 

Imagine being the person behind the glass that has to greet people or the doctor that has to tell them there is nothing more that they can do. Or the nurse who sits with them while they have their treatment. 

Their jobs are so very tough. 

Now imagine having the power to make each of those people smile because you put on a crazy hat or wore a silly costume. 

Imagine that you are the person who gives everyone the excited anticipation on "what will she do next?"

I got to be that person. 

It was an honor to be that person. 

My next appointment isn't for three months! Even though it's stopping for a good reason, it feels so strange to having something that has been such a huge part of my life for a year, just stop. 

I get to move on but I will miss the other patients and the staff that I've seen every three weeks for a year. 

Thank you to everyone at the Abramson Cancer Center  in West Chester. You not only saved my life but you did it with humility, humor, love and grace. 

I will forever be grateful for all of you. 

My Nature

This might come as a surprise but...

I'm A LOT!

Just a lot of, well, everything.  

I do everything at full-speed and 100%. 

Except the laundry. 

I hate the laundry. 

I really, really hate it. 

But I digress...

I put 100% into everything I do. Could be knitting, painting, cake, business, friendships, love life, motherhood...whatever. I push myself all the time. 

I don't just accept a challenge, I tackle it. 

I'm a fighter and I always get back up. 

I just can't stay down. 

When I was diagnosed with cancer there was only one way for me to handle it. The same way I handle everything else: full steam ahead, gloves up, no hesitation. 

From lump to chemo, I knew I would fight. I was not going to let that bitch win!

I've been competitive my entire life, I hate to be doubted and I love to prove people wrong!

My mom knew this and used to tell my swim coaches that the best way to motivate me was to tell me they didn't think I could do something. 

That was how I set the 50M butterfly record in high school and the diving record in college. 

I come from a family who works hard, doesn't give up and doesn't shy away from confrontation. 

I was raised by very strong-minded people, but it's also my nature. 

Dictionary.com defines nature as: the basic or inherent features of something especially when seen as characteristic of it. 

I think that Aesop demonstrated nature best in the fable The Scorpion and the Frog: 

Drawing by Michael Morgenstern

A scorpion and a frog meet on the bank of a stream and the scorpion asks the frog to carry him across on its back. The frog asks, "How do I know you won't sting me?" The scorpion says, "Because if I do, I will die too." 

The frog is satisfied, and they set out, but in midstream, the scorpion stings the frog. The frog feels the onset of paralysis and starts to sink, knowing they both will drown, but has just enough time to gasp, "Why?

Replies the scorpion: "Its my nature..." 

Many times in my life, I have cut my nose off to spite my face because I speak my mind. 

One of the things I also do 100% is talk...even when I know I shouldn't. 

It's my nature. 

But, my nature keeps me from quitting...I just don't.  

While it is my nature, my drive also comes from my parents. Dad was a sailor. In all the years we sailed I think we dropped out of two races. One was because we hit something and ripped the rudder off the stern of the boat and the other was total lack of wind, the crew was threatening mutiny and a keg party awaited us. 

Dad was a smart man who knew when to cut his losses! 

While we were never a horse family, the philosophy of "getting back on the horse" was practiced. Failure wasn't really a failure unless you gave up trying.

When I was in high school I was practicing for the summer Tri-County diving championships and was temporarily distracted...in mid air...and landed flat on my back in the water...in front of everyone!  

I was crying hysterically, was going to give up and go home but mom wouldn't let me. Through gritted teeth she told me to stop whining and get back on the board. 

Yeah, my back hurt...like hell actually...but my pride was hurt worse and the only way to get over that was to get back up there and show it who's boss! 

I did get back on the board, I did execute the perfect dive and I did win Tri-County that year! 

Everyone will fall down and make mistakes and everyone will fail at some point in their lives. Life is not a cake-walk. It's hard, messy and can be painful.

When I was a kid if I said something wasn't fair dad would always reply, "No one ever said life was fair." 

He was right. It's not. 

But, it can be filled with a myriad of blessings and lessons that will make us better and stronger. 

You can live in the negative or you can see the opportunity. 

Your choice. 

Failing at something is different from being a failure. 

Failing is an opportunity to improve and correct, failure is a mindset. 

Failure, to me, is the equivalent of being a victim. 

I am not a cancer victim, I am in the process of becoming a cancer survivor. 

There is a difference. 

Besides, it's my nature. 

Sharing My Experience

Every three weeks I go to the infusion center for my Herceptin. 

What is Herceptin? 

Herceptin (chemical name: trastuzumab) is a HER2 inhibitor targeted therapy. Herceptin works against HER2-positive breast cancers by blocking the ability of the cancer cells to receive chemical signals that tell the cells to grow. Breastcancer.org.

I don't actually get Herceptin, I get another drug called Kanjinti that is chemically similar and achieves the same result...and they have a copay assistance program which is a huge help financially. 

There is no denying that I am weird, crazy, insane...whatever, but I really do look forward to going to infusions. 

Even when I was getting chemo I looked forward to being there. The staff, nurses and doctors are some of the nicest poeple on the face of the earth. The aftermath of chemo was tough but the people are amazing. 

In anticipation of losing my hair, friends sent me fun hats to wear and I have continued to wear hats or outfits throughout the additional treatments. 

The staff has told me that get excited when they see my name on the roster! They even talk about what they think I'm going to do.

The infusion I had in March was the Friday before St. Patrick's day. I decided it was close enough to roll with that as a theme. . 

I found a really fun headband that blinked and a shirt that said, "Who Needs Luck, I have Charm"

As I was getting into my car I caught my reflection in the rearview mirror, giggled and thought, "I love my life." 

And I do. I really do. 

Looking back at this past year one would questions my sanity. 

Seriously, it's been one shit sandwich after another but...I'm alive! 

I have so much to be grateful for! 

I have a loving hubby, two amazing boys, two incredible businesses, an amazing business partner, and incredible assistant and wonderful, loving friends. I'm on the downhill side of becoming a cancer survivor, I've met some of the most amazing people you can imagine and I have been able to make people laugh in the midst of the turmoil that is cancer treatment. 

Yes, I am blessed. 

I get to make people laugh. 

I look forward to those laughs. 

Working on outfits and themes gave me a purpose during chemo. I was able to focus on how I could be funny instead of feeling miserable. 

And now, I can be a guide for others who are starting on the path. 

I don't have answers but I do have experience that I can share. 

I recently went to see a friend who is going through chemo for ovarian cancer. Her chemo is a different cocktail than mine was but the acid reflux and nausea that it induces is the same. She had been eating Tums to no avail. I brought her a baggie of Gaviscon chewables and told her to take Nexium (after she'd checked with a pharmacist) because it had worked wonders on me. 

Guess what? It works for her too! The Gaviscon is a game changer. That stuff is a miracle in a chewable! 

We sat and talked a just bitched about the ravages of chemo on our bodies and the irritation of chemo brain - it's real people!

I was able to commiserate as I'd "been there done that" already and my experience was close enough to offer hope that this too shall pass and she can get on with life. 

I also gave her a super fun shirt. When she pulled it out of the little gift baggy I had stuffed it into she laughed. 

Making her laugh made my heart happy! 

Purpose

I never imagined that I'd end up in a position where I would need a Medical ID/Warning bracelet...

But, here I am. 

Did you know that once lymph nodes have been removed from an armpit that arm can never be used for blood pressure, IVs, injections etc? 

Why? 

It could cause Lymphedema. 

Yeah, I didn't know what that was either. 

According to the Mayo Clinic: "Lymphedema refers to tissue swelling caused by an accumulation of protein-rich fluid that's usually drained through the body's lymphatic system. It most commonly affects the arms or legs, but can also occur in the chest wall, abdomen, neck and genitals.

Lymph nodes are an important part of your lymphatic system. Lymphedema can be caused by cancer treatments that remove or damage your lymph nodes. Any type of problem that blocks the drainage of lymph fluid can cause lymphedema."

Anyone can develop lymphedema but the likelihood of it happening to a cancer patient who has had nodes removed is much greater. 

I knew when I went in for treatments to make sure they don't take blood pressure on my right side and I can't have blood work done there either but it never dawned on me that I should get a bracelet until I was told about a post in my support group but my chemo buddy Christina. 

What if something happened and I wasn't conscious to tell the professionals not to touch my right arm?! 

I went to a Bove Jewelers in Kennett Square, PA, looked through the catalog, found a bracelet I'd be comfortable wearing and placed the order. 

It arrived last week and looks great! 

The front says Lymphedema. On the back it says, "No blood test, blood pressure, no IV or injections in this arm"

When I asked what I owed, the owner Bob Strehlau looked at me and said, "You've been through enough, it's our gift to you." 

I cried and hugged him. What a beautiful and generous gift! 

The past 11 months of our lives have been insane. I'm looking forward to the day they become a distant memory. That being said I have made some new friends, tightened bonds with others and have learned that there are few things that I value more than prayer. 

I don't talk about my relationship with Jesus much because I struggle with putting my feelings into words. 

There is an idescribable level of peace that comes with knowing that God has a greater purpose for our struggles than just making us struggle. 

Few things grow in complacency.

The times in my life where I have grown the most were some of the most difficult ones. At the time it was horrible, looking back it was necessary. 

Whether it was my own health or my husband's, there were many people who called to pray with me over the phone and we had prayer teams around the country praying for his recovery. 

A few years ago, during a sermon, pastor Johnny said, "People always say the God doesn’t give us more than we can handle but that is wrong.  God purposely gives us more than we can handle so that people turn to him."   

I can’t say that I know the exact purpose for Glenn to get hit so hard with covid but, while Glenn was fighting for his life, friends who are declared agnostics and atheists started praying. People who’d walked away from churches for a variety of reasons were praying. Not just to a “higher power” but to our Lord. 

People were united in one purpose, praying to one God. 

Our God. 

Beauty from ashes. 

I am grateful to God for saving my hubby. I am grateful that this experience pricked the heart’s of those who had turned away and they are turning back. 

And, I will forever be grateful to everyone for lifting us up in prayer. 

There is a profound level of peace in knowing that even when we felt like we couldn’t go on we were being carried by others. 

No Whining

Kids fall down and get hurt, they will cry but they need to figure out how to get back up and get on with life. Life is messy and sometimes sucks. I can't crawl under a rock and give up when things get tough and I don't expect my children to do so either.

I'm not a bitch. I don't just ignore them if they are hurt, but I will walk away from a tantrum. 

I bandage boo-boos, dry tears and give kisses. I love hugs and snuggles and a good tickle fight! I hate to see my kids hurt or struggling but I know that those struggles are what will make them stronger. 

I also love playing games with the kids but I don't let them win on purpose. When they beat me at Uno, it's fair and square!

I am not the type of person who over-mother's my kids. I am not a helicopter parent and don't deal well with people who manufacture reasons to worry. 

I've always known that when I had children, I was going to raise them to be independent, self-sufficient respectful, productive members of society. 

It's the way I was raised and couldn't imagine doing it any other way.

But...once I became a boy mom it became even more important to raise good future husbands.

Seriously, I hope to have daughters-in-law someday and I don't want them to hate me because I raised a couple of momma's boys who couldn't do anything for themselves! 

Besides, I'm not a coddler. I despise whiney anything. I don't care if it's a cat, dog, fish or child. Whine and I don't want to be anywhere near you.

Both Glenn and I have encouraged the boys to do things for themselves at very early ages as well as have them help with tasks around the house. These could include anything from scrubbing toilets to helping put the mulch in the gardens.

They are in third grade now but have been getting dressed, getting their breakfast and brushing their teeth on their own since first grade. Initially I would assist but they handle the bulk of it.

I will give time prompts like, "30 minutes to bus!" but they handle the rest.

After the pandemic hit and we were forced into quarantine, I bought Uncrustables, snacks, juice packs, etc. and showed them where everything in the fridge was. At lunchtime, they'd grab their stuff and either sit inside if it was cold or rainy or outside in the sun to eat lunch.

Raising self-sufficient kids isn't hard. It just takes commitment to let them do things on their own and resist the urge to micromanage. Most of the time they do not do things the way I would, (they are, afterall only 9) but, in the grand scheme of things, that doesn't really matter if the job gets finished. 

I want them to make their own way in the world and that requires them to figure stuff out on their own. 

We believe in chores.

They help with the laundry, empty and reload the dishwasher, help with the trash and recycling, vacuum, mop, dust and scrub toilets.

If I have a crazy week and life gets ahead of me, they can, and do, pitch in.

Having independent kids paid off in spades while I was going through chemo. There were days that I literally, could not lift my head off the pillow.

During the summer it wasn't a really big deal but once school started, they had to fend for themselves in the mornings. They would get breakfast, brush their teeth, pack their snacks and get dressed by themselves. I would give my usual time prompts but they handled everything else.  I would message a neighbor asking her to let me know that they got on the bus safely but that was about all I could handle. 

Chemo ended in September and our busy lives continued with gymnastics, karate, business, etc. 

Then Glenn and I caught Covid at Christmas. 

Not a style of holiday celebration I recommend for anyone...by the way. 

We didn't get the easy, get over it in a few days’ variant. We got nailed!

The boys were fine but Glenn and I were down for the count...for days. More than a week really.

Once again having independent children who could fend for themselves paid off.

Neither Glenn nor I were able to get up. We had lots of leftovers in the fridge that the kids could eat and I would order food to be delivered so that they weren't always scrounging to find something.

Hubby and I joke about the kid’s week of "self-parenting" but they really did. With covid in the house no one could go anywhere anyway so iPads, pillows and forts were the tools of choice.

I got better, Glenn did not.

We got him to the hospital where he stayed for 19 days.

I did my best to keep life as usual for the kids. Thanks to some wonderful friends we were able to maintain the status quo. But I am thankful that my kids can and do the chores we taught them. 

Glenn was discharged on Saturday, January 29...in a snow storm because, why not?

It was great to have him home.

He was still exhausted, and we had soooooo much to learn about the diabetes but we have wonderful friends who have jumped in to share their knowledge and experience that we also had peace of mind knowing that we had back up if we needed it.

The kids were just happy to have him back in the house.

They were pretty chill through the whole hospital stay but dad's return was an obvious relief.

Glenn is doing much better. Unfortunately, we recently had a major scare that sent Glenn to the ER via ambulance.

To say that it was terrifying for me was an understatement. Blowing a kiss goodbye to the man I love as the ambulance doors closed will forever be one of the toughest moments of my life.

Sending him off with a major pain in his chest and still filled with blood clots was terrifying because I had no idea if I was going to see him alive again. 

The cause of the pain was never diagnosed but all the things that could have killed him were ruled out. So that was good-ish. I try to focus on the positive but it's so difficult sometimes. I feel like I'm constantly waiting for the other shoe to drop...thank goodness I'm not a centipede! 

I struggle with the unknown.

Even when something is bad I can usually deal with it as long as I know what it is. Trying to maintain my faith when I have no clue what is happening (like mystery chest pain) is something that I struggle with.

My friends know this about me. Three different people sent this to me in the past 48 hours. 

“And the peace of God which surpasses all understanding, 

will guard your hearts and minds in Christ Jesus.” 

Philippians 4:7

All it takes is faith and really cool kids. 

 

 

 

 

 

 

Bacon It Is

I'd love to tell you that the doctors got Glenn's diabetes under control and he is home recuperating but...

Things went from bad to worse. 

Glenn has a strange pain under his ribs on his left side. No one really seemed to know what the problem was and when I asked Glenn via text he replied, "Colitis."

I googled it and got a basic understanding and as long as it's caught and treated early it's not the end of the world. 

Then the pain went away. 

That was on Friday, January 14. 

Saturday Glenn's platelets started to drop. 

What are platelets you ask? According to John's Hopkins "platelets, the smallest of our blood cells, can only be seen under a microscope. They’re literally shaped like small plates in their non-active form. A blood vessel will send out a signal when it becomes damaged. When platelets receive that signal, they’ll respond by traveling to the area and transforming into their “active” formation. To make contact with the broken blood vessel, platelets grow long tentacles and then resemble a spider or an octopus."

Sunday they dropped again but everyone seemed to think it was a covid thing and nothing showed on tests...besides the pain was still minimal.


When I asked the nurse about the colitis she informed me that he never had colitis.

Um...what?

As a covid positive patient the staff has to wear double masks, face shields, gowns and gloves when the go into his room. Understandable precautions of course, however...Glenn doesn't hear very well.

One of his doctors is a woman with a very high pitched voice which is already difficult for someone who has hearing loss, nevermind through two masks and a face shield. I have no idea where he got the colitis from, and neither does he, but the good news is that he doesn't have it.

Monday and Tuesday he continued to improve was taken off oxygen, his platelets were beginning to climb and was scheduled to be discharged on Wednesday, January 19.

Then his spleen exploded.

No, it really did.

Explains the platelet issue.

Because he had been scheduled for discharge I had turned off the ringer on my phone so I wasn't woken up every time an email came in, like I had been every night for a week. I was exhausted, thought that things were better and that turning off the ringer for one night would be ok.

Huge mistake.

They had been trying to call me since 3:30 in the morning but I didn't wake up from the vibration of the phone ringing until 5:30.

Terrible way to wake up by the way.

His spleen had ruptured and he was bleeding internally. His spleen needed to be removed...immediately.

There was no way I could get there before they took him to the operating room so the doctor called me from his personal cell phone so that I could tell him I loved him before they took him to the OR.

Although he was still testing positive for Covid, now that he was in ICU, they allowed me to visit. I had to show proof of a negative covid test and wear wear a mask, a gown and gloves.

They could have told me that I had to wear an iguana suit and I would have done it. I hadn't seen Glenn in a week. I'd have done anything to be with him.

After his surgery I arrived at the ICU, donned the PPE and entered the room.

I had to keep myself from going into a full blown panic attack.

Hubby had tubes and wires everywhere! He was fully sedated, on a ventilator, had a gastic bypass tube coming from his nose, a catheter, four IVs, a pulse oximeter on his finger, pressure things on his legs, heart monitors all over his chest and restraints on his wrists to keep him from trying to pull out the ventilator tube if he woke up. 

It was tough to see him like that...really tough. 

But, I got to sit with him and hold his hand. 

The next day they took out the ventilator tube and he could talk. 

The following day they moved him out of ICU into a regular room and declared him Covid resolved so the gown/glove restriction was removed and I could visit whenever I wanted! 

It was such a relief to see him improving. 

He tried to apologize and I jumped on him verbally. 

This is not something that he caused and no apology is needed. 

It's not like he was screwing around with a chainsaw and cut off his foot. This was a virus that reacts differently in everyone it hits. There is no way to predict who will have a tough time with it. 

He has enough to deal with without the cloak of guilt! 

Through all of this I have done my best to keep friends, family and loved ones up to date on his status, while running businesses and being mom and domestic engineer, chauffeur, chef and laundress, etc. 

Most of it communication has been pretty easy. Once I sent one text I copy and paste the rest. I do call his family and my mom though. 

Fortunately, the boys' schedule has long been established and Glenn normally travels a lot for work so I'm already used to being the chief cook and bottle washer. 

What I'm not used to is the stress. 

Three times now, the day he was supposed to be discharged, there has been a complication. I'm at the point now that I don't want to know if they think he'll be discharged. Just call me when he's ready and I'll go get him. 

The rollercoaster ride is horrifying.

Right now I'd pay someone to shoot the ride operator...sadistic prick. 

I spend most days on pins and needles waiting for updates from doctors, nurses or Glenn. 

Glenn's updates are usually one or two words that end up generating more questions than peace of mind. He's never been a really wordy guy but the lack of details only adds to the stress.

I do my best to stay strong and not alarm the kids. Within reason, they know everything that is going on. I don't tell them things right away. I let things sit for a while and make sure I am calm before I tell them so they don't panic.  

The strategy seems to be working. I think they appreciate not being kept in the dark and I haven't incited any drama. Kids really are resilient and understand much more than we give them credit for. 

David has competed in two away gymnastics meets since his dad got sick. We have been to Atlantic City, NJ and State College, PA. He has added huge number of medals to his collection. He won almost every event in Atlantic City and placed first in the All Around. In State College he had a rough time in a couple of the events but still finished 4th overall. 

After one of his worst floor routines ever, he came back and scored a 9.9 on pommel! 

I am impressed with both his physical and mental strength. He seems to be able to put the stressful stuff aside and focus on the task at hand. A phenomenal trait at such a young age. 

Daniel has continued with his karate and Jiu jitsu. He loves it and is working on his brown belt! We are adding another day for lessons for him. 

Daniel is our "roll with it" kid. Very few things rattle him. He has a very laid-back, loving demeanor and would rather snuggle up and watch a movie than anything. Until he's grappling in jiu jitsu. He's fiercely competitive. It's not a side we see often so it's facinating to watch! 

Both boys chose to play string instruments this year. David is playing the violin and Daniel is playing the cello. They practice a few minutes every day and are doing really, really well. 

They had a concert last week. I was able to record all of the songs to play for Glenn. I was crazy impressed with how well the kids did. To be honest, I thought it was going to be cute but audibly painful. I didn't
expect to be able to actually hear music! 

Their teacher is both a miracle worker and a saint! 

I was also able to send Glenn videos of David's meets. The reception in the gyms sucks but I could run outside between events and get enough bars to get the videos to send. It wasn't the same as having him there but at least he could see how David did in real time. 

Glenn is still not home. 

Again, he was supposed to be discharged but they ultrasounded his legs and found clots. 

Glenn's text consisted of, "Not good. Clots."

It was three hours before I could speak with his nurse. 

Can you say, "Stress"?

He is on a Heparin drip now and will be monitored very closely as the blood thinners dissolve the clots. 

Thank God they checked him prior to discharging him! 

As always, I'm desperately trying to stay positive and find things that we can laugh about. 

One of the best so far came from one of the boys' friends and classmate who was diagnosed as a Type 1 Diabetic in first grade. 

She came to Daniel in class to give him some tips to pass along to his dad, "If he gets hungry," she said, "Tell him that he can chew on ice chips or eat meat, even bacon. He can have as much bacon as he wants because there are no carbs." 

Bacon it is! 

More Research Is Needed

Did you know that a potential long-term side effect from Covid is Diabetes?

Yeah, neither did we. 

While I have bounced back and and almost 100% again, Glenn was not so lucky. 

We thought he was making progress and had begun to eat again but his thirst was off the charts, he was still losing weight at an alarming rate and his fatigue was terrible. 

He went to the doctor who sent him for a chest x-ray because she was concerned about covid pneumonia.

Turns out he does have a mild case of pneumonia, so mild in fact, that if that had been his only complaint the doctor would have given him steroids and sent him home. 

It was the additional symptons that had her concerned so she wanted Glenn to head to the ER. 

Before we could leave I had to organize after school care, transportation to gymnastics, pick ups and dinner. It was a crazy amount of phone calls and texts but thanks to my assistant Jace, the parents of their friend and our wonderful friend Cory, everything worked out well. 

We got to the ER at approximately 4:30. I wasn't allowed in and had to wait in the car. Fortunately, this is the same hospital where my surgery was so I am familiar with the layout and was able to find a lounge where I could hang out, plug in my Kindle and cell phone and wait until they took him back. 

Unfortunately, I didn't last that long. Glenn needed a charging cord for the phone and informed me at 8:30pm that it was going to be at least three more hours until they were going to give him a bed so I gave him my cord and headed home so that Cory could head out. 

Glenn wasn't given a bed until 11:30 last night! 

Turns out that the pneumonia was the least of his problems. 

His blood sugar was over 500! 

Blood sugar, or glucose, is the main sugar found in your blood. It comes from the food we eat and is the body's main source of energy. The blood carries the glucose to all the body's cells to use for energy. 

Normal blood sugar ranges from 70-100. 

What is Diabetes? The American Diabetes Association has a great article that explains it. 

So how does Covid cause diabetes? 

No one is 100% sure but it seems that they are getting closer to understanding what is happening. Recent research has discovered that the beta cells in the pancreas are particularly subject to attack by the Covid virus. Beta cells are responsible for the production of insulin and insulin is what is used to deliver glucose to the cells in the body. This article from abcNews does a nice job of explaining what happens, why diabetics are at higher risk and what happens to the pancreas to cause diabetes to develop in a patient. 

I learned today that viruses in general have long been suspected of causing or exacerbating diabetes. More research is needed but to have identified the attack on beta cells is huge and could lead to greater diabetes break throughs over time. 

Statistics are showing that the danger is worse for children under the age of 18 but, as we have learned, it can still happen to adults. Unfortunately, they don't have enough data to truly understand why some will get it and some won't. There is no way of knowing if the patient was predisposed to it or if they were prediabetic prior to contracting Covid. 

Again, more research is needed. 

Much like the symptons of Covid the side effects are numerous. As a result of Glenn's diagnosis we are now aware of the potential for diabetes but are also learning that other serious side effects include blood clots, strokes, heart issues and Guillain-Barre Syndrome which causes paralysis. 

Unfortunately, Covid is here to stay. I firmly believe that eventually everyone will get it. Some will suffer worse than others and some will just sail through. There is no way to predict how each person will be effected...yet. 

Hopefully, as time passes, the medicines will get better and less people will get it. 

In the meantime, keep an eye on your loved ones, especially the children. If they have had Covid and are suddenly thirsty, fatigued and losing weight they need to be tested for diabetes. 

I did my best to explain to the kids today what was going on. I think they understood. Lucky for us they have a friend who is a Type 1 diabetic so they understand that dad will need insulin and shots. They seemed relieved that he is feeling better already. 

He'll be in the hospital for a few days but his prognosis is good. 

If you are inclined, we'd appreciate if you could send a few prayers up.

Thankful, Grateful, Blessed

Thanksgiving 2021 was a wonderful, low key afternoon filled with family, laughter and delicious food. 

 

Because I was going to be having surgery again, I decided that we would use paper and plastic for Thanksgiving dinner. I'd never done this before. I love to set the table with my china and silver but I didn’t want the extra burden of cleaning up. 

 

Guess what? 

 

The food tasted just as good as it would have if I'd served it on china! 

 

Clean up was easy and stress free! We would have used disposable cups but I could only find Red Solo Cups and well, I drew the line on that.

Thankful, Grateful and Blessed are just some of the words that came to mind as I sat on the sofa Thanksgiving night with a fully belly and a face that hurt from smiling so much. 

 

I’ve been through some rough spots in my life but this past year has taught me more about love, gratitude and blessings than any other! 

 

Being diagnosed with breast cancer and going through chemo taught me the importance of attitude, humor and a support system. 

 

Being diagnosed with breast cancer also helped me see what really matters. 

I've always been the type of girl who doesn't beat around the bush. If you want warm and fuzzy, I'm probably not the girl you want to hang out with. 

 

Don't get me wrong, I can be kind and loving and offer a shoulder to cry on but I will most likely find a way to make you laugh. 

 

I really prefer to laugh. 

 

The last quarter of the year has been trying beyond description. 

Between the medical bills and the car situation it's a wonder that I haven't pulled out what little hair I have! 

The week before Thanksgiving week I spent seven hours on the phone dealing with the medical crap plus another three dealing with the vehicle situation. 

I had no idea that I had a spare 10 hours in the week. 

Who knew?! 

I have also cried more dealing with the car than I did through my whole cancer diagnosis and treatment. 

When I am frustrated beyond words I cry then shut down from depression as the walls close in. They closed in hard and fast and I was despondent. 

Well, until I hit that stupid deer. 

Anyway...

After receiving the quote from the dealership that was astronomically high, I called some independent transmission shops and got quotes. The best was with a guy who has rebuilt 15 of the same transmissions this year. His price was $3,800 worst case scenario including parts. This was nearly $2K less than the dealership quoted us. Even if the Ford corporation paid for parts, our out of pocket expense was going to be more than the whole fix with an independent. 

I called the dealership to tell them that the vehicle was going to be towed out and see if we owed them anything. 

In true dealership fashion, I was told that they service manager had to speak to his boss, but he wanted to see if he could match the price. 

He called me the next morning and, after confirming the independent shop was going to use Ford parts, asked if they could do the job if they matched the price. I told them yes, as long as they would guarantee that it wouldn't cost more than $3,800. 

They said yes. 

I'd won...sort of. 

I freaking hate this BS. 

I've had a LOT of jobs in my lifetime. Not the least of which was working in the service department in dealerships. 

I know the game. I play the game well. I hate the game. 

And, I despise feeling as if I was being screwed. 

We were definitely getting screwed. 

I hate having to do it but am grateful for the experience that gives me the know-how to get it done. 

The car is repaired, Ford Motor company paid for part of the repairs and the rest cost us less than $2K out of pocket. 

On the medical expense side of things, I have applied for grants and copay assistance programs. I'm happy to report that $75 of each chemo/infusion double billing is being paid for by the makers of the Kanjinti (generic Herceptin) that I've been receiving. This cut my bill to Penn Medicine by almost half! 

I am still sorting through bills but things don't feel as horrible as they did couple of months ago. 

Hubby and I got each other Covid for Christmas. 

Christmas and New Year's were spent sleeping. In fact, most of the past three weeks have been spent sleeping, when we weren’t coughing. 

 

The cough has been terrible. I couldn’t talk for days. Just the thought of speaking would incite a 10-minute coughing fit that would leave me wiped out. 

Slowly but surely, we’re getting better but it’s taking a lot of time. 

When Covid hit and the world shut down we thought 2020 was the worst year ever. 2021 was like, "Hold my beer!"

This past year has sucked, but you know what? 

I am alive, we’re getting healthy, I never have to wear a bra again and I didn't have to shave for a whole freaking summer!

I am thankful for early intervention and amazing medical professionals. Grateful to friends and family who helped us and blessed by God with a positive attitude, sense of humor and a strength that helped me get through the mess that was 2021! 

I can do all this through him who gives me strength. ~ Phillipians 4:13