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. 

Pacifically

As I mentioned in my last post, there was a "spot" on my spine that showed up on my bone scan. 

That set off a chain reaction that left me in bed all day on Saturday bawling my eyes out. 

It was bound to happen eventually and I did feel a little better afterwards. We really do need a good cry from time to time. 

A friend calls these Cancer Sucks days. 

So let me back track a bit here...

Got the bone scan results that said there was something there but felt that it was most likely degeneration. Then I had the breast MRI that showed the tumor being significantly larger than what they saw in the mammogram...I'll get to that shortly. 

My surgeon wanted to make sure that the spine thing wasn't a huge issue so she ordered an MRI. The insurance company declined to authorize it because I hadn't had an x-ray, because paying for an unnecessary x-ray makes sense, so I had an x-ray and that showed something there too. 

That was on Friday...then I waited again. 

The weight of what might be in my spine hit me on Saturday while I was out delivering cakes and I had a total meltdown. I got someone to cover my shift at the store, went home, crawled under the covers and stayed there crying and napping all day. 

Part of my pity party was because I hate pity parties!! The other was because I am competely powerless and felt like I was taking two steps back for every step forward. It's a roller coaster I wouldn't wish on anyone.

My prayers were frantic. I couldn't put a cohesive thought together and just kept saying, "God's got this." Honestly, I really do believe that but I got into my head and started the "what if I have bone cancer" game. Fortunately, the Lord knows my heart and even when I am depressed, angry or frustrated he really is holding me up. 

But, it doesn't mean I can't be pissed off or that I don't need a good cry! 

I managed to pull myself together in time to eat dinner then went back to bed. 

Monday rolled around and I met with the genetic counselor. It probably wasn't a waste of time, but it felt like it was. I had my mom's genetic report with me and after the counselor looked at it she said, "Your mom was negative for all seven of the genes that she was tested for. You most likely won't have the BRCA gene which is fantastic." I replied, "Well, considering that I have breast cancer it doesn't really matter now does it?" 😳

The appointment consisted of me telling the counselor my family history while she drew a flow chart. We have an $80 copay for specialists. So, I paid $80 for someone to write down my horrible family cancer history. I am a candidate for genetic testing but it's more money and well...it's more money. 

The worst part of the appointment was that no one bothered to tell me that I was going to be meeting with this counselor in an infusion center. The waiting room was filled with a plethora of other cancer patients in various stages of treatment. To get into the counselor's office I had to walk through the actual infusion area which I was definitely not ready for. I know, I know, I'll be there eventually and at that time I'll know I'm walking into an infusion center. It really was traumatic.  

That afternoon the radiologist's report came in confirming what the more advanced bone scan had already found. Although both radiologists felt it was degenerative, because of my breast cancer, they recommended an MRI with and without contrast. 

My nurse navigator got me right into Jennersville for an MRI on Tuesday afternoon. By this point I've had blood drawn, a nuclear injection for the bone scan and the injection for the contrast for the breast MRI all in my right arm. I had the nurse give me the injection for the contrast in my left arm and well, now I look like a junkie. 

Hot! 

Both the radiologist at Jennersville and the radiologist at Penn Medicine have read the MRI and confirmed that there is no cancer on my spine...it's arthritis. Yay for getting older. 

I met with my surgeon yesterday morning and surgery is confirmed for Monday, May 17. I won't know the time until the Friday before. 

She will be performing a double mastectomy with sentinel node biopsy. I have requested that she do an aesthetic flat closure that leaves no spare skin as I will not be having reconstruction. Surgery is expected to last approximately four hours depending on the sentinel node biopsies. If it comes back clear we are good to go. If not she'll have to take more. 

Now let's back up to the breast MRI...

The tumor was larger for a couple of reasons: 1. They can see it 3D in the breast MRI where the Mammogram is flat, because...that's how they make your boobs. 2. I have both invasive and non-invasive cancers in my right breast. Until they breach the duct walls and invade the breast tissue they are contained which means they are currently non-invasive. Non-invasive is considered Stage 0. 

All together the tumor is 6 cm but only 2 cm are invasive so I don't need chemo before surgery. If the invasive stuff was 4 cm or more, I'd do chemo first to shrink it and then have the surgery. 

In my last post I mentioned HER2. HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2). This protein promotes the growth of cancer cells. In about 1 of every 5 breast cancers, the cancer cells have extra copies of the gene that makes the HER2 protein.

Evidently, I'm the one out of five. 

Winner! 

Ugh! 

Now that we know I am HER2 positive my chemo plan will be a little more aggresive and I will be given Herceptin via infusion for a year. HER2 inhibitors work against HER2-positive breast cancers by blocking the ability of the cancer cells to receive chemical signals that tell the cells to grow.

Of course the actual chemo plan won't be confirmed until after surgery and the pathology comes back. 

In the meantime, I started taking Reishi mushrooms. A friend also gave me a book called Medicinal Mushrooms. It is an easy read and fascinating! Reishi mushrooms are really bitter but the good news is that I can put the tincture in my coffee and can't taste it! 

Clinical studies with Reishi have found that patients have a better response to chemo while using it and if stay with it my immune system will be stronger too. I bought dried ones and decocted them. In order to decoct them I had to boil them for an hour then strain off the water and squeeze out the mushroom. They never got soft but I did get lost of "juice" that I was able to use this week. I have run out of the juice so I'll be going to The Woodlands at Phillips Mushrooms Farms to buy some other mushrooms until the ones I ordered arrive. They sell the book there too if you are interested. 

And, if all this wasn't already enough to digest, our central AC decided to quit this week! I mean when you have a family medical deductible of $9,000 (thanks for that Obama) what's another $5,000 right? 

Yup! So we are weighing our options and will most likely replace both the AC and furnace. Both are more than 20 years old and it would be at least $1800 just for the freon because they use new stuff now. If we have to do one we might as well bite the proverbial bullet and do them both. But seriously...Now? 

Managing stress has been crazy hard this week. Thankfully God blessed me with two of the most amazing hysterical children in the world. They keep me on my toes and make me laugh. Today we were driving David to gymnastics and I challenged them to say Irish Wrist Watch five times fast. The result had me laughing so hard I had tears streaming down my cheeks. 

Daniel then said, "I want Kieran to try this." David asked, "Why pacifically Kieran?" Daniel yelled, "PACIFIC IS AN OCEAN."

I came really close to shooting coffee out my nose! 

BTW it was only last week that Daniel was also saying "pacifically." 

Thanks for the laughs guys...I really needed them this week!