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. 

Sleepless No More...I Hope!

The past couple of months have been wracked with difficult nights. Not only has the stuntman not wanted to go to sleep but he's been waking up once or twice a night. We'd go a full week without incident, and then just as the pattern was getting established he'd start all over again.

To say it was frustrating would be an understatement. 

I'm a pretty high energy person and can usually get by on a couple of hours of sleep without a problem. I've been known to do this for days or even weeks on end but usually with a purpose like a trade show or something that would keep me so busy that I wouldn't notice the exhaustion. 

At the end of whatever the event was, I'd crash for a day and get the sleep I needed. If you've known me for any period of time, you'll know that this was my standard means of existence. 

This is no longer the case...

With a child that was only sleeping for 3-4 hours at a time - intermittently, I was unable to ever feel like I was rested. The worst part was that we had no idea when his bad nights would strike. 

The final straw came about a week ago when he had a particularly horrid night and was up at 11:00,       1:00 am, 3:30 am, 6:30 am and finally at 8. He would not lie down in his crib and spent most of the night on my chest in the recliner. By the time that night was over I felt like I'd been dragged through a knothole and didn't look much better either! 

Many of my friends and my mom, insisted that I call the doctor, which I did. 

The nurse called me back to discuss what was going on and said that he really should see a doctor, since he'd had a cold lately, they were concerned about his ears. Ok that makes sense but that wouldn't account for the previous months of turmoil. Anyway...

I threw myself together - even managed a shower - changed the kids into regular clothes and headed out. 

Our regular pediatrician wasn't in that day so he was seen by another doctor who after checking his ears, eyes, nose and throat declared him to be in perfect health. While this is a great and wonderful thing for which I am eternally grateful, this declaration will not garner sleep for any of us. 

She did say that if he is teething that I should use ibuprofen instead of Tylenol because it will help with the swelling that accompanies teething. She then went on to say that when he has his episodes, we could give him a teaspoon of Maalox and see if he settles down. If that works then they could prescribe Zantac for him. 

I called hubby on the way home and gave him the report and asked that he pick up the Maalox on his ride home from work. He couldn't find it but did arrive with a bottle of liquid Rolaids. We gave him both the liquid Rolaids and ibuprofen that night and every night since.

We have had six consecutive full nights of sleep! 

Our routine now involves putting the bottles of milk in the microwave to warm them and giving the stuntman his bedtime cocktail of ibuprofen and liquid Rolaids. Hubby heads to the sofa with the engineer and I take the stuntman up to the rocking recliner in the bedroom. 

We do this because the stuntman is too easily distracted by any form of stimulation. Doesn't matter if it's the television, the cat walking across the room or his brother breathing, anything will take his attention away from the task of falling asleep. 

For some reason when I try to put the engineer down, he wakes up. I seem to have better luck with the stuntman and hubby has better luck with the engineer. Once their bottles are finished or they are out, whichever comes first, we put them down for the night in their cribs. 

I can always tell when hubby is bringing the engineer up to bed by the sounds of the toys he collides with on his way to the stairs. One particularly distinctive sound is that of the Leap Frog Turtle who has these gears on his shell. Each gear has a different number of bugs on it. If you push on the gear it talks. 

The other night I hear, "Three bees buzzing. Bzzz, Bzzz, Bzzz" as he kicked the turtle. 

Oh good, hubby's on his way upstairs. 

Not realizing that the poor little thing was still in front of him he hit it again this time making it sing, "My friends are traveling on my back..."

Oh. My. Gawd!!! I can't laugh, I can't laugh, I can't laugh! I'm going to wake the stuntman! 

The kid is a champion power-napper! He can be asleep for five minutes and if woken up, will be awake for another three hours. Each night when we climb into the chair I boot up Lullaby World's Lullabies For Babies To Go To Sleep on You Tube. Not only is it visually interesting it is mind numbing and helps the stuntman achieve the perfect level of trance that lets him pass out in obtain a very deep sleep. 

Thank goodness too because the combination of noise from downstairs and my giggling would certainly wake him up. 

Hubby reads my blog so he knows that I pick on him about his clumsiness. He can't deny it and will even make comments about whether or not what he's done will end up on the world wide web. Some of what I post actually seems to impact him albeit not always in a good way.

Back in August, I wrote about his 18-inch disease. (See Shiny) Right after that post I caught him standing in front of the sink, coffee mug in hand trying to decide if he was going to put it in the sink or actually open the dishwasher.

I laughed.

His mug ended up in the sink.

His 18-inch disease improved for a little while but honestly not very long.

Last weekend, after he finished his coffee, headed over to the sink to put his coffee cup in it. I had cooked breakfast, unloaded and reloaded the dishwasher but there was still a bunch of stuff in the sink that needed to be hand-washed.

I heard this loud, aggravated sigh come from the direction of the sink and when I asked what was wrong he said that there was so much stuff in the sink that there was no room for his mug. I replied that he could put it in the dishwasher, which is where it belonged anyway.

"I can't," he replied with a wicked gleam in his eye. "I have that disease."