Wednesday, June 5, 2013

Doctors and biopsies and results... OH MY!

OK.... so I didn't go shopping.  Major bummer. I had wanted to go buy new art supplies. I ALWAYS want to buy new art supplies. But I didn't. Instead I went home and told MMH (Man of my heart) that this was no Oswald we were dealing with. And like the amazing man he always is, he held me tight and said, "No matter what it is, I'm right here."  Could he have been any more perfect at that moment? Hell no! He's amazing.

"What's next?" he asked.

"We wait for them to call about my appointment. My doc will be scheduling a biopsy. They will call us with the date tomorrow."

We chatted a bit and then I hit the library. When in doubt, read books on it! There are a lot of books out there about breast cancer. I had no clue.

I picked up three that looked like they would explain things in a way that I could understand and found one called "The Cancer Husband".  That looked like it would answer questions and explain things in "real guy language". So I grabbed that one for MMH. He is like me... Books have the answers to all life's mysteries.

So I headed home and buried my head in the books. And found out that I had a LOT more questions than I ever dreamed. I also learned that I was going to need a degree in biology AND a medical degree to get any answers from the first book. Into the reject pile with you... NEXT!!!!!

Book two had a pictures and diagrams that I could at least follow. YAY! ( I'm a visual learner) After looking at book two, I realized that I knew NOTHING about my situation and the books were NOT helping. All I knew was that they suspected it was cancer. I didn't have a clue if I did have it. I didn't know what kind it was or the stage or what treatments I was going to need. All the book answered was what happened AFTER you were diagnosed and had a fair amount of information in your hands.

***** Note to self ***** Write a book that women are given when they have a questionable mammogram and ultrasound; One that tells them what is going to happen next. Not what happens after the diagnosis.
This is something that is definitely needed. Something to read while you wait.

In case you didn't notice, I don't wait well. Blame it on the Marine Corps. We identify the problem, plan the attack, Implement the attack, Celebrate the victory. That is what we do. Find the problem and fix it. Done!

I can't do that here. I have to wait... I HATE WAITING!!!!!! 

Finally the doctor's office calls and says I will see the doc on the 16th.

What!? On the 16th? That is 48 hours away. Waiting again.... 

Fast forward to the 16th:

MMH and I arrive at the doctor's office and are greeted with a smiling doctor who tells us once again that the test results show that this is probably a cancer.  Kinda clear on that one already... that is why we're here. 
There are options for wigs and breast prosthetics, or reconstructive surgery... Bla bla bla.... ( enter Charlie Brown's teacher again...)

Meanwhile ... In my head : What are we talking about this for? When do we do the biopsy? When do I have a pathology report?The books all say I need a pathology report. I need to know kind and stage and margins and .... Damn it I need a pathology report! When do we do this!? NOW?! 

Out of my mouth:  "Ummm when are we going to do a biopsy?"

" Well, they will call you when we have it scheduled. The surgery department has to schedule that. They will schedule surgery and remove the lump and biopsy it. Results are usually back in about 5 days."

In my head: What the hell!?  So I booked my butt down here just to hear you tell me I can get a wig if I need one? Why can't we call up the surgery department and find out WHEN we can do this!? Get this thing out already! Give me answers! I could care less about wigs and boob reconstruction right now! I need answers! 
Out of my mouth: "Oh, OK so they will call. Um any idea when they will call?"

"As soon as they get you scheduled they will call. Is there anything else I can do? Any more questions?"

"Ummm I guess not. So I just wait for the call with the appointment, right?" 

"Yes. They will call when it's scheduled."

"Ummm Do you think that maybe I should talk to Roswell ParkCancer Institute and have them look at the biopsy for a second opinion?"

"You certainly can, but I don't think they will be doing anything different than we would. A biopsy is a biopsy," she says, with  a bit of what appears to be stress or aggravation creeping over her face. "We have really good doctors and I think we can take good care of you."

"Ummm OK, Well, I guess that's it then."

"I'll talk to you after your biopsy. All the results will come through me. I'll coordinate your care."

"Ummm yeah. Uh, OK, I guess... "

Then MMH and I walk out to the car. We were both really quiet for a bit and then I looked at him and said, "I think we need to at least TALK to Roswell."

His comment was simple and to the point, "Definitely!"

So it wasn't just me. WOOHOO!  I wasn't the only one that felt like we had bought a one size fits all dress and they gave us a color that we didn't even like.

But I waited....

Next day (May 17th)  the phone finally rang. "Ms. Ferguson, we have your biopsy set up for May 30th."

In My Head: What do you mean May 30th!???  That is two weeks away! There is no way! Why are we waiting three weeks? Can you people not set up an appointment and get this thing out of me any sooner!???  

Out of my mouth:  "OK, thank you."

Then everything went all whirlwind in my brain. It was going to take two weeks to get the biopsy done and then another 5 days at least to get results. Who set up this system? It had to be men! Women would never make you wait like this. (Guys that are reading this.. pardon my hostility, but if you had a lump growing in your balls, you would be feeling the same way. Results and NOW!)

More waiting...

MMH and I were not happy with the waiting, but the biopsy was already scheduled.

So I muddled through the day trying to make sense of the books I had on hand and the info I found on the net.

OH MY GODDESS! The amount of information on the net is total overload! I had to start a new folder for the bookmarks on breast cancer and the pages that offer support and information.

And I must admit, I am a major fan of  &  They both made me smile. I hope I can do that for someone with this blog.

Now... as we discussed before, I SUCK at waiting. So I talked it over with MMH and we decided that we were not comfortable with this waiting thing and were going to call Roswell Park Cancer Institute.

Thursday May 16th I emailed Roswell for more information about what they do and their facility. I got an immediate reply and a request for my phone number so we could talk in person.  They called the next morning for more information and to chat about what was going on. Immediately they requested my mammo and ultrasound from my doctor. Woohooo!  They don't do wait either! I like these folks!

But I must admit, every time I said Roswell I pictured myself on a spaceship consulting with aliens. LOL  What can I say I have a warped sense of humor. THANKS DADDY!!!!  :)

My doc got the test results to Roswell on Friday, the start of Memorial weekend. Yep, a four day weekend. I was sure I was going to be totally screwed. But first thing Tuesday morning (May 21st) my phone rang....

"Jessica, we would like to schedule your biopsy for the 30th. I know that your other biopsy was set up for the same day, so the choice is up to you. We are really sorry we couldn't get you in sooner. If there is a cancellation before then, would you like us to call you? We'd really like to get things moving on this."

In my head:  Weeeehooooo! Someone on my kind of time schedule! Find the problem, lay out the plan, execute, celebrate. I am doing this with these people. They are totally on my time schedule!

Out of my mouth: "Yes, lets schedule for the 30th and please do call if there is an opening before then."

So it was done... we were moving and I was finally going to get answers. And they had done all this is less than a week! THIS is how it's supposed to be done.

I cancelled the original biopsy and informed my doctor that I would be going to Roswell... aliens and all!

May 30th

MMH and I arrived at Roswell. No aliens in sight. (damn!)  But there was an awesome guitarist playing in the main waiting area. Too cool! This place is all about mind, body and spirit healing. I am so into that.

We were moved right through and only waited 5 minutes before we were ushered back to the biopsy area.

The awesome Mammographer, Dr. Majewski, and her nurse ( so sorry I don't remember her name.. I was a bit zoned out) were super awesome. They explained that we were going to do a core biopsy, because that was less invasive and gave us more options should we need to do surgery.

So we listened to James Taylor and poked a hole in my boob. This was a totally simple process. I was awake the whole time. I'm a super fan of lidocane! No pain. Didn't even know she was in. Doc M offered to let me watch the process on the screen but I passed. I'm not so good with needles. Yeah.. I'm a wimp when it comes to needles. One look at it going in the skin and I'm out like a light drooling on the floor.

She was super great and explained every step we were doing, down to the massive stapler sound when they popped the core samples out. Odd, but not really upsetting. Just odd... kind of brought back the alien thoughts for a moment.

So, boob patched and clothes back on, Dr. M met with me and MMH for a Q&A session. ( they even had a cold soda waiting for me in the room... these aliens ROCK!) She answered very carefully and did her best to go into detail on everything. No rush no hurry.

MMH asked why we didn't just take out the lump and get that over with. Doc M explained that it was less invasive and would give us more options if this turned out to be cancer, which she was leaning heavily towards, just from her observations today. "These things have a certain look to them. I've seen too many and this looks like we may be looking at a positive."

She explained that she would be the one to call me with my results. "We won't have all the information that the final pathology report will have when I call, but I WILL be able to tell you if it is cancer or not and what kind it is. If it's positive, you'll meet with  your team on the 6th and get the full report and discuss how best to proceed from there."

So MMH and I went home to wait.  Three to four business days is the norm for pathology reports. My phone rang the next afternoon...

"Jessica, it's Doctor Majewski. I have your results. They rushed them through since you had been waiting so long already. I'm sorry to have to tell you that the results are positive. You have invasive ductal carcinoma.
(pause) Are you OK?...."

"Yes, I'm fine. So where do we go from here?"

" You have the appointment already wet up to meet with your team on the 6th. They will have the full pathology report and will be able to answer a lot more question that I know you must have. They will get the ball rolling on this and help you decide what you want to do next. Do you have any more questions that I can try answer for you?"

"No, I think I'm just going to write them all down and get ready for the appointment on the 6th. Thank you so much for being so patient and helpful up to this point."

" That's my job. If you think of anything you might want to ask before then, please feel free to call us and I'll do my best to answer you. I'm rooting for you on this! Best of luck! You can win this fight."

"Thank you... "

MMH gets home from work...

"So... " I say after we do our welcome home chat. "Roswell called with my results."

"And what did they say?" MMH says stopping in his tracks and taking my hands.

"Invasive Ductal Carcinmoma"

"Then we kick it's ass out and get on with our lives, right?"

"Right!" I said as he folded me in his arms.

"We can so beat this. Invader Zim picked the wrong woman to mess with this time. He's outta here!"


So tomorrow is June 6th. I meet with the Alien team. We get to ask all those questions I have in my pink notebook. They get to answer them. Then we plan the attack!

Boob Warriors... prepare yourselves for the fight! The battle is before us!!!!

( thinking to myself , why couldn't this have happened in November when I could have written all this as my NANOWRIMO novel... nonfiction.. .massive word count... sigh.. oh well... )

1 comment:

  1. I appreciate the updates Jess, and yes! People will turn to your blog for support, laughs, and information. You are brilliant, and that will not go unnoticed. (((hugs)))