The Bell & The Ball

I rang the bell!!!! 

I turned out to be a bigger deal for me than I thought it would. 

Seriously, it was big! 

I came really close to crying. 

My outfit for the day was a winged pig with the theme, "Chemo may be over, but I won't stop fighting until pigs fly." 

I made a ton of winged pig cookies to give to well, everyone and brought a huge basket of stuff to give away. 

Friends and loved ones have been so generous but there were so many things that I wasn't going to use. Rather than have them sit on a shelf in a closet, I thought it would be best to take the basket with me. I put a large note on the front that said, "If there is something here that could help you or a loved one, please take it." 

I put it on a table in the waiting area and told everyone there to help themselves and they did! 

As usual I bounced around at chemo handing out cookies, talking with the other patients and staff and laughed a lot! 

Then we headed home and, as usual, I was crazy busy Friday and Saturday nights! 

For a number of years now I have volunteered for the Silent Auction Committee for the Southern Chester County Chamber of Commerce at the Annual Gala. We have such a good time and the money we raise goes to the scholarship fund for graduating seniors. 

This year, due to covid, we had to change the date and the location of the event. It's normally held in March but we had to postpone until September and I am proud to say that it was a huge success! 

Fortunately, because it was on a Saturday night, I was still hopped up on steroids from chemo the day before. I felt great and had plenty of energy to get through the event and finish a cake when I got home.  

Speaking of the steroids...I have gained about 15 pounds during this experience and had nothing to wear. 

I had to be at the venue at 4:30. I didn't discover the wardrobe issue 2pm. Needless to say, I was pretty freaked out! 

I called a friend of mine, who had lost a bunch of weight, hoping that she hadn't cleaned out her closet, to see if she had something I could borrow and...

She did!!! 

I went from having nothing, to having a gorgeous dress that fit like it was made for me. 

Woohoo!!! 

So relieved. 

The only problem was that the bodice would flop open if I leaned forward. 

Huge shout out to Tina at the The Stone Barn in Kennett Square. She found a huge box of safety pins and helped me pin the bodice closed so my scars wouldn't traumatize anyone. 

After we got the dress pinned Tina headed out to finish setting up and I stayed in the ladies room to do my make-up and bedazzle my head. 

It was a wonderful night with great food, fantastic music and a lovely venue. 

I have been a member of the chamber since I opened my business. So many friends came over to congratulate me on ringing the bell. 

We talked about my decision to not wear a wig and about my bedazzled head. 

They also shared stories of loved ones who are fighting the battle now. 

I am blessed. 

All things considered my fight has been an easy one and my prognosis is excellent. 

Yeah, I have side effects that I'm still dealing with but everything could have been so much worse. 

I'm seriously considering becoming a volunteer at the cancer center. 

I enjoy talking to the other patients, finding ways to make both patients and staff laugh and help take the weight off their shoulders for a while. 

It feels good to help people and if something good can come from this then maybe that's why I was there to begin with. 

Robotic Box Checker

I thought I was going to get my drains out last week.

I was wrong. 

Unbeknownst to me, the total drainage per side needs to be below 30 cc per day for two days consecutively. Not knowing this, I arrived at the surgeon's office only to be informed, rather snippily by the nurse, that I was not going to be having them removed that day, the next day or probably not until the following week.

When I questioned why she said that I was draining more than 30cc's for the day. When I replied that I didn't know that she said, "I asked you when you called this morning." 

Technically she did. However, she did not ask, "Are you under 30cc's for the day?" What she asked was, "Are you under 30cc's?" I replied that when I emptied the drain that morning it was less than 20cc's. 

She got nippy. I got snippy right back and said, "You'll have to excuse me. This is the first time I've had my boobs cut off so I have no idea how things are supposed to work."

Then I had a massive meltdown... and the nurse got a lot nicer.

But, I still spent the day in bed crying. I was devastated. 

The drains hurt. 

I mentioned previously that the drain on the right was killing me. It was super painful and as it healed it got worse. Add suction pain to the drain pain and I was completely miserable. Seriously, it felt like my skin was being sucked into my chest. 

Sleeping has been nearly impossible which has contributed to my deteriorating emotional state and increased depression. Two antidepressants a day did little to help me. 

Don't get me wrong, I could and did, push through most days but all it would take was a pin to drop and I was off and blubbering again. 

I'm not the worst at asking for help but I'm not the best either. 

Fortunately for us, people have been better at helping than I have been at asking. 

Dinner has been delivered every other night by an army of friends and neighbors. The kids have had transportation provided and extra play time at friend's houses so I could rest and my staff has been UNBELIEVABLE! 

Honestly, I couldn't ask for better employees! I want to go into detail about these women but I will save that for another day and give them the full post they deserve. 

Fast forward to this week and my drains were removed on Wednesday...finally. 

We arrived at the surgeon's office and checked in. 

The nurse (same one) came around the corner and told Glenn that he couldn't come in. I responded with another  massive meltdown...like snot bubble, hyperventilate meltdown. 

Persistent pain is exhausting. I was worn out and clearly incapable of controlling my emotions.

Fortunately she relented, let him come with me and my drains were removed. 

The left one was uncomfortable but the right (the one that's hurt the whole time) hurt like hell! The nurse had to stop halfway through removing it so I could take a break. 

She also removed the steri-strips from the surgery and it looks so good! The incision is still a little wrinkly but it's flattening out a little each day. 

I did apologize for being such a nut job in the waiting room. She told me it was ok and went on to explain that since she was in the room alone she was afraid of having my husband pass out (something that has happened with spouses before) and she would not be able to take care of him and pull the drains at the same time. 

She told me I didn't need to apologize but I did again anyway. I do feel badly. 

Without the drains in, both my demeaner and my range of motion are improving. I'm not crying at everything and I even helped on some of the cakes this week! 

Maybe I'll even be able to fold the massive pile of clean laundry that has accumulated in the house. 

Yippee. <snark>

Glenn washes and dries but doesn't fold. 

After lunch we met with my oncologist, Dr. Tedeschi at Penn Medicine. 

Before the doctor came in a technician came to take my weight, temp, oxygen level etc. then began asking the barrage of general questions. The best one was, "Are you experiencing pain?" Glenn snorted, I laughed and said, "I just had my drains removed, so today is probably not the day to ask." She looked at me like a deer in headlights and asked, "So you have pain?" I replied, "Yeah, yeah I have pain." 

Then she asked...

Wait for it...

...

"Where?"

"Where they cut my boobs off!" I snarked. 

Really?!

C'mon people! I understand that these are trained individuals but seriously, can we bring back common sense?! They are not just trained but over-trained an incapable or not allowed to think for themselves. 

It was like speaking with a robotic box-checker. 

The Oncologist was a different story! I really like her. She is smart, funny, compassionate and has common sense! 

She didn't brush my concerns aside about having two businesses and needing to be as available as possible. When discussing the chemo schedule and possible side effects she made the suggestion of Fridays for infusion. This way if I have a negative reaction to the chemo my down days would be Sunday and Monday when the store is closed anyway and I wouldn't have to worry about finding someone to cover my hours. If it goes well and I feel up to it, I can have the infusion in the morning and then work in the afternoon! 

If I don't have any reaction to the chemo, I can switch my infusion days to Tuesdays in Kennett Square vs Friday's in West Chester. The difference in drive time is about 25 minutes each direction so being able to move to Kennett Square would be fantastic! 

Dr. Tedeschi did say that I would probably lose my hair. I replied, "Well, a summer without shaving can't be all bad right?!" She looked me in the eyes, smiled and said, "I like you. We're going to get along really well." 

I know for some losing their hair can be very traumatic. Truth be told? I'm sort of looking forward to not having hair. I've had a life-long love/hate relationship with the stuff. It is extremely frizzy. I once even had a hairdresser refer to it as fuzzy! Not having to deal with it at all might be a welcomed change for a few months. 

Now onto the chemo regimen....

I will be having Taxol + Herceptin infused via a port once a week for 12 weeks and then just the Herceptin once every three weeks for the remainder of the year. 

Many people are familiar with the chemo cocktail of ACTH. This stands for chemotherapy medicines Adriamycin, Cytoxan (chemical name: cyclophosphamide), and Taxotere (chemical name: docetaxel), plus Herceptin.

ACT is much more harsh than just the Taxol and comes with so many more side effects. I am feeling very lucky. Studies have shown that, in patients with clear nodes and a mass less than 2 cm, there is no benefit in receiving the ACT with H and that Taxol plus Herceptin is just as effective. Had the mass been larger or the nodes hadn't been clear my treatment would be the ACTH. 

Chemo will start on June 25. 

When we walked through the door after the appointments on Wednesday the boys greated us with, "Did they take them out?" I pulled my shirt up to show them that the tubes were indeed gone. They both cheered enthusiastically and for the first time in almost two weeks I got to fully hug my kids. 

Something I hope to be doing for many, many, many years to come. 

Counting Blessings...One-handed

Yes there is such a thing as being too patient!

The other night the Engineer tripped and face planted right into the door jamb. After I got him settled down hubby was playing with him when the Engineer fell again and hit the same spot which was again followed by screaming.

Hubby is so patient, too patient in fact. He held the Engineer, whose screams continued to escalate, and just sat there on the sofa with him waiting for the 15 month old to settle down...which did not happen.

If doing the same thing over and over again and expecting a different result is really the definition of insanity, then hubby is truly nuts.

Since day one he has done virtually the same thing. While I believe that kids need to learn to soothe themselves, there are times when self-soothing is not an option and distraction is the better option.

I thought this was common sense...evidently it's rocket science.

When I tell him to move around, etc. he gets defensive like I'm picking on him. Noooo I'm here all day, I have to distract them fairly frequently and know what works because I'VE TRIED IT!!

Of course some days are better than others - which really goes without saying but, I've said it anyway.

Most days the boys are capable of playing by themselves. They will fight over toys, but usually find something else to play with once the toy has been removed. There are certain toys that we keep out of reach as they involved parental supervision and well...I don't always feel like supervising.

Since we began the liquid Zantac our nights have improved immensely. The kids sleep through the night almost all the time now...almost.

We've been battling colds lately. Large quantities of snot aside, it hasn't been bad during the day, but night time is another story all together.

At approximately 9 p.m. every evening, we settle the kids into their highchairs, dispense meds and brush their teeth. The Stuntman receives a dose of Zantac and liquid Rolaids and if needed the Engineer will receive a dose of ibuprofen. Most nights the Engineer gets jealous of the Stuntman's medicine and we have to give him a "taste" to settle him down.

Of course, he only wants this when he's not sick. When he is sick, giving him medicine is a terrible experience for all of us! It takes no less than two people to administer any drug. He fights, screams, cries and whips his head back and forth and no matter how you put it in his mouth, he spits it back out.

Honestly, I'd much rather give pills to a cat than liquid medicine to the Engineer. That being said, I do have more than 40 years experience with cats and only 15 months experience with the Engineer.

When the boys have colds they don't sleep well. Really, who does when they are sick? At least as adults we know what the problem is and how to deal with it. As babies they have no idea what is going on and can't be reasoned with. Crying makes their snot production go into overdrive and giving the Engineer a dose of anything in the middle of the night is not an option! 

Recently, the Engineer AKA The Urinator peed so much that he soaked his diaper, his pajamas and his crib and woke us, as well as the neighborhood, up with his screaming. We got him changed and because I didn't want to change the sheets in his crib at 2am put him in the big bed with us.

Unfortunately, the Stuntman doesn't sleep through the Engineer's screaming and he woke up as well. There was nothing wrong with him but he was now wide awake.

We only have a queen size bed, fitting the four of us in it is not really an option so I took the Stuntman down to the family room and snuggled on the sofa in desperation of recovering some much needed sleep.

Since the Stuntman's faulty dismount from the sofa, and subsequent stitches in the back of his head, we keep the coffee table pushed up against the front of the sofa so they can climb up and down without injury. I left the coffee table in place, grabbed a bottle of milk from the fridge and settled down on the sofa on my back with the Stuntman on my chest.

After a while, he wiggled himself between the back of the sofa and me leaving me on my side with my knees bent, which he didn't like. Eventually, he rolled over onto his stomach taking up the bulk of the sofa cushion and began kicking me to move my legs so that he could stretch out. I had no choice but to roll over onto the coffee table and try to sleep!

Needless to say it was a really bad night and when I finally did wake up my left arm was asleep and completely paralyzed.

Despite having the bed, hubby didn't really have a much better time. The Engineer does this thing with his legs when he is on his stomach where he "digs" with his feet which propels him forward. Hubby was awakened by whimpering to find the Engineer had traversed the head of the bed and propelled himself down in the chasm between the bed and the nightstand - head first!

Nights like this I try to count my blessings and think of the time with either boy as bonus snuggle time.

However, it's really hard to count blessings when the fingers of one hand are paralyzed from sleeping on the coffee table which may be very sturdy but not the least bit snugly. 

Weekend Away

I will be starting a part-time job this coming weekend and had to spend last weekend in a training class in Chicago.

I left my house at noon on Friday and didn't get home until about 2am Sunday night/Monday morning.

Way, way, way too many hours without seeing my babies. Hubby was good about sending pictures but pictures are not the same as holding them.

I was ok until I got a panicked call from hubby because the Engineer had spiked a fever of 102 and he had no idea what to do. Although I purchase generic over the counter drugs I use brand names when talking about them. Advil is much easier to say than ibuprofen and ditto for Tylenol over acetaminophen.

Hubby was stressed which stressed me out and I began to panic. I don't panic often but this was utterly out of my control and I was freaked. In giving him directions I resorted to the easier to say brand names and he replied that there was not Tylenol.

O. M. G. Seriously!

I'm pretty sure that he's the only person in the world that doesn't know that acetaminophen is the generic of Tylenol. I tried to do my best to not yell into the phone.

I failed.

After a few minutes (he had to write down the directions) we switched from phone to FaceTime and when the Stuntman realized that mommy wasn't going to be coming out of the phone he began to cry which touched a cord in me had me choking back tears. It was awful. After saying goodbye and hanging up I sobbed uncontrollably for about 10 minutes. Every tear that I had fought back since noon that day cascaded down my cheeks.

I pulled myself together, remake-upped my face and went downstairs to grab some dinner and prepare for the weekend training. Despite my having a good time, my hubby and my boys were on my mind the entire time. Frequently throughout the weekend I would pull up pictures of the boys just so I could see them.

We never did the FaceTime thing again. It was just too much for the boys (translation: I couldn't handle it!). As it was if hubby put me on speaker the Stuntman would cry when I'd say goodbye. It really sucked being out of town. 

But, I survived the weekend.

Hubby had to get up and go to work Monday morning so he was in bed when I arrived home at 2 a.m. As I headed upstairs I noticed that he'd left the outside light on and when I went to the backdoor to turn it off I discovered that hubby had made a heart in the snow in the backyard.

He'd purposely left the light on so I would see it.

He's such a sweet guy!

I made my way up the stairs, peeked in on the boys, brushed my teeth and crawled into bed next to the love of my life.

You Call It Teething, I Call It Hell!

When I was pregnant women reveled in telling me their horror stories about pregnancy and birth. I was extremely sick when I was pregnant and while it was nice to hear that other women didn't enjoy the experience either I would have preferred to have talked about anything other than being pregnant like, I don't know...like...the migratory pattern of the swallow or anything else that would have taken my mind off of my misery. 

After the boys were born, I was given a reprieve from the "my pregnancy was worse than yours" stories but was then bombarded with annoying "just wait until" stories that primarily revolved around poop: color, texture and smell. And, while I appreciate a good laugh, the stories did little to offer any advice or assistance. 

We have received some really good advice such as using mini frozen pancakes as teethers. They numb their gums and give them a snack at the same time. 

Some of the bad advice has been to put the coffee table in the basement and basically bubble wrap the entire house, if not the children. My mother is strangely obsessed with tempered glass. Every time the boys press their faces to the windows, which they love to do, she says, "I hope that glass is tempered." I get the impression that even if it was bullet-proof glass she would say the same thing. 

We take necessary precautions and have removed thing that can kill them, inserted outlet covers,  bought a new (to us) entertainment center that closes so they won't be inclined to play with the cable box and installed gates at the top and bottom of the stairs. 

There will be no bubble wrapping of the house. 

It's amazing how many lessons we have learned in the first year of their lives. 

First and foremost on the list is that the biggest oxymoron in the history of mankind is term "childproof."

"Child-resistant" would be more accurate. And even then, it should be prefaced with the word hopefully. 

We try but seriously, we can't be with the kids 24/7 and don't want to be either. In fact, you can tell the kids whose parents hover around them. They are whiny, demanding and incapable of entertaining themselves. 

The boys are pretty good at entertaining themselves for a couple of hours each day. They do fight over toys and access to them but for the most part, once redirected, do a great job. 

There are days, and nights, that are endless hours of hell that can be attributed to one thing and one thing only...Teething! 

This began at four months when one of the boys teethed non-stop for an entire day. 

Since then we've had days and weeks of reprieve but lately both of the boys have been teething incessantly. Most of the time we can settle them down with a coating of Orajel (on their gums) and when needed baby Tylenol or baby Motrin. Most of the time...

The past week has been horrible! 

They have been teething worse than ever and all I can hope is that they will cut a whole mouthful and get this over with! 

The drool, runny noses and crying aside, the worst of it is the whining! 

I HATE WHINING!

I really do. I despised it before having children. I despise it in other children and I despise it in my own children. When they whine, I usually say something like, "Nobody wants to hear that." I thought I was making that statement up but according to my Aunts, my grandmother was known for saying this as well. Evidently, I'd heard it years ago and filed it away for future use. 

The boys' used to sleep through the night. Now they are awake multiple times. One has night terrors and is teething, the other is just teething. Either way, I'm pretty sure I got more sleep when they were two months old than I do now. 

If you've known me for any period of time, you know that I am a high-energy person who is capable of operating very well on very few hours of sleep. However, I don't really do well in the middle of the night when my REM sleep is interrupted by a screaming child...or two...in need of another coating of Orajel or some pain medication. 

Most of the time I am very patient with the kids but in the middle of the night, when woken from a dead sleep, I am neither patient nor thinking rationally. I try to get up and get to them as quickly as possible but there are times that I pretend to be sleeping hoping my hubby will get to them first. 

Why I do this, I don't know. It rarely ever works and even if he does get up, he can't get them to settle like I can and I end up getting up anyway. 

We have all of the over-the-counter teething meds, some of the newest and greatest teething toys but what works best? Frozen sweet potato fries and frozen pancakes if they are crying but if just in need of something to chew on they love their spoons. They have two types of spoons. One is all plastic and the other is metal with the rubber coated bowl. Those are actually their favorites which is cause for more lecturing from my well-intentioned family and friends. 

I understand their concern but when they are hurting and nothing else works, they get the metal spoons...end of discussion. 

I'm sure that something will come along soon enough that I will deem worse than this but the  teething experience is terrible and the doctor assures me that this can be a two year long process...Oh goody! 

In the big scheme of things two years is really a drop in a pond and crying, colic, poopie diapers, boo-boos, etc. are all things that can be fairly easily overcome. But, it is pretty evident to me that Dante was not a parent. Otherwise he would have created a level of hell filled with teething infants preventing individuals from sleeping by whining and screaming at all hours of the day and night as penance for evils committed during their lifetimes. 

Rolling with the Punches vs. Panic

About a month ago three of my BFFs flew in from across the country and Canada to spend the weekend, play with the babies and get in some much needed "girl time." They had coordinated their flights to land within a half-hour of each other which made picking them up at the airport insanely easy.

We left the airport and headed to out for Sushi.

I haven't had Sushi since the weekend we closed on this house two years ago November. When I was pregnant nothing looked appetizing except turkey subs and Sushi was an especially nauseating thought never mind the fact that I was not allowed to have it. I have been craving Sushi for months now, so I made sure that everyone was on board with it and found a highly recommended place in Baltimore.

It did not disappoint.

Two of us LOVE Sushi, one likes it and the other, at the end of the meal, declared it good...except for the fish. Ha! It's a good thing that I wasn't drinking anything when that line was uttered or I would have had iced tea shoot out my nose!

Some of the pieces were extremely large. I don't cut my sushi I just dive in and stuff the roll into my mouth. One of the girls figured out how to pull the seaweed apart so that she could divide it in half. One of them tried to copy that technique and used her chopsticks...like a knife and fork...as if she were cutting filet mignon. I tried to not make fun of her but after watching her do this, seemingly endlessly with no visible result, I and the other two girls just burst out laughing. She might as well have been trying to cut down a tree with a herring. (note the Monty Python and the Holy Grail reference).

We laughed hysterically, jumped from topic to topic and left with our bellies full but our wallets not ridiculously light. I even ordered some sushi rolls to take home to hubby who was being daddy extraordinaire with the boys for the afternoon and evening.

The next day hit the Amish Market and got pretzel wrap sandwiches which are AMAZING and just for good measure picked up some pretzel wrapped cheddar wurst and some pretzel cinnamon sticks. As if that wasn't enough we cleaned out the day old table at the bakery and grabbed some pumpkin bars just in case anyone got hungry!

On the way back from the market we went around two cars that were stopped on a back road and three young ladies standing on the side of the road looking beyond confused. As I backed up to their cars to check on them I noticed that one of their cars had a flat tire.

I know my way around a car pretty well so we parked our car and gave the girls a hand. None of them had any idea how to change and flat and the car with the flat didn't even have a jack in it! The rim with the flat tire on it only had three lug nuts holding the wheel in place. There are supposed to be four. She said her mechanic said she didn't need the fourth. Um...yeah...I'm pretty sure the fourth one isn't just there for looks.

I hate mechanics like that.

How would he feel if someone told his daughter some crap like that. She was driving up and down the turnpike on that thing!

While removing the lug nuts, one of them broke in half. Apparently, the know-it-all mechanic put them on too tight and in the process of trying to loosen it, it just snapped off.

And then there were two.

She asked if I thought she could make the 50+ mile trip to Baltimore for the weekend. I'm not 100% sure but I think we all shouted, "NO!"

While all of this was going on my twins were just hanging out in their infant seats on the embankment. They love to be outside and watching all the action was plenty to keep them entertained.

The girls that we helped were really excited to have learned how to change a flat tire and I explained that as single girls traveling alone there are certain things that they should know...that is one of them.

I love these weekends with the girls. We stay up entirely too late, eat horrible foods and laugh...a lot!

The weekend was a weird comedy of errors that had us running in odd directions dealing with things that most people never have to deal with much less all in one weekend. But, it's par for the course when we get together and we always weather whatever comes.

Most of my friends, if not all, can pretty much roll with the punches. We seem to be able to adjust to whatever comes without much fanfare. I can't say as much for my hubby.

My hubby is a wonderful, loving, patient, kind, understanding, good hearted, fun loving guy...until the babies are crying or he is behind the wheel of a car. Those are truly his major weaknesses. Well, that and he is a horrible multi-tasker. Give him a task and he will knock it out of the park. Try to have a conversation with him while he is doing it and he will completely stress out. Throw a crying baby into the mix and...well...all bets are off!

When the girls were planning their trip they not only coordinated their arrivals but they coordinated their departures too. This made pick up and drop off very easy! The one difference was that one of the girls has a friend who lives in Virginia and she had made arrangements to have that friend pick her up at the airport at the same time I was dropping everyone off.

Great idea until the friend was almost an hour late!

I was not really concerned because this gave me some really good one-on-one time with her that I would not have had otherwise.

Hubby was home with the kids who were evidently fussy and my cell phone started blowing up! So much for “quality time” with a friend that I get to see once a year!

Rather than being able to enjoy our extra time together, I was peppered with phone calls from a stressed out hubby who had evidently lost the ability to think on his own and despite my telling him otherwise, and our repeated conversations about the drop off schedule, thought I was going to drop them at the curb and head right back home. 

I sent text messages to both of my mother’s helpers begging assistance and discovered that neither was home and therefore unavailable!

I contacted a friend and told her what was going on and she said she’d go right over. Thank you, thank you, THANK YOU!

For the most part the kids are pretty easy. Their fussiness is usually short-lived and they giggle at the drop of a hat. Unfortunately, my hubby is not all that easy to distract and once the kids start crying his ability to think goes out the window.

I understand that crying or fussy babies can get on your nerves; they get on mine too. What I don’t understand is the panicked response to it.

My mother assures me that this is just a normal male reaction to crying babies.

Unfortunately, I don't think this is a stage that my hubby is going to grow out of!