Well, today was filled with a little more good news. The PET scan was clean. It only showed the mass that has already been identified! Hooray! Totally worth the mochaccino barium. No metastatic disease is quite a relief. And I think I will celebrate with 14 hours of sleep.
Thanks for all the positive thoughts and good juju you all are sending my way. It must be working.
Next up is the meeting with the surgeon at the end of next week. Hurry up and wait some more.
I glow in the dark for at least the next 12 hours, there is a lot of radiation in my system. Today was fun it started with water for breakfast and then off to get radioactive. I started with the radioactive glucose injection and then the radiology tech tells me I will need to "sit quietly". For an hour. In a room with nothing in it. Really? Sit quietly and stare at the wall. Sure, my brain gets quiet these days. Instead this is what was going on in my head:
At this point I was pretty sure I had more radioactive-ness (yup now I am making words up) than Peter Parker. I was wrong. Next up came Mochaccino flavored Barium Sulfate shakes. 900 ml of mochaccino flavored chalky thick liquid. In other words; delicious. The gentlemen tells me that he understands this is a lot of liquid and to sip it. Clearly he has never tasted this crap. I am thankful for the straw that allows me to bypass my tastebuds and down the liquid in less than 2 minutes. However, mochaccino everything will never be drank by me ever again.
Next up is scan time. I have terrible range of motion in my shoulders so I am not so pumped when they tell me to put my arms up over my head (and then have me put my feet together and lash them together with a giant elastic band...ok. I promise I won't run away, is this really necessary?). Then comes the contrast via IV. I am very thankful for the warning the radiology tech gave me, because when it is injected it feels like you peed yourself!
For the record, you in no way pee yourself and the feeling passes in 30 seconds or so. Scan complete and lots (and lots) of carbohydrates eaten since. None of which are mochacinno flavored. Now we play the waiting game.
Today some good news. After lunch I got a page from the Nurse Practitioner that said "Hi Sara, Call me I have some good news". I think she was excited to not be calling me with bad news, yet again. Ok everybody ready....the left side mass that was so interestingly extracted yesterday is...wait for it...
BENIGN!!! No cancer in the left breast! Yay!
Ok, but learning from last week I know I'm not out of the woods yet. Tomorrow is still the PET scan. Which means tonight for dinner I had baked chicken breast (larger than a deck of cards) and some steamed spinach. And lots and lots of water. The reason you cannot have carbohydrates before the test is that they use radioactive glucose (well fludeoxyglucose) for the test. Malignant cells are metabolically more active than normal cells and they take up more glucose. Therefore during the Positron Emission Test (PET scan) depending on the amount of fluoride taken up by cells depends on what color they appear [the following synopsis was brought to you by UptoDate a fine program we have at work]. The goal for tomorrow is no colors (except for the 2.1 cm mass already none in the right boob) that is why there is no exercise or carbohydrate for me. Hopefully the results will be in before the loooong weekend.
Today was the MRI biopsy on the left. It started with the same nurse for the ultra sound biopsies. Needless to say she shared the same reaction most people have when she saw me. "What, 30 years old, dietitian, that just doesn't seem right." She got me prepared for more fun and confirming name and date of birth 12 times. We chatted about life and good substitutions for sour cream (non fat greek yogurt). Then the Radiologist came in. She told me that this mass was so close to the chest wall that she wasn't sure she was going to be able to biopsy it. Great, missing a full day of work to have a metal clip placed I could have done this on my lunch break. But, she wanted to give it a try as long as she wasn't going to be at risk for getting the needle into my lung. Yes, I agreed with her, please lets leave my lungs out of this.
After the IV is put into my arm, we are ready to have me lie face down again. This time there is a wedge on my right side to have me rolled as far to my left as I can then one arm by my side and one arm up over my head. Again, super comfy, but next up not only do we have loud banging noises but needles are involved and I have to answer questions as we go along. Today, however, they put in a mirror which acts as a periscope and I can actually see what is going on around me (minus the biopsy part). The radiologist feels she has found the spot and proceeds to numb me up good. I have to say having your entire breast numb is really odd. And then it got weirder. Once I was totally numb she took samples. All you can feel is vibrations going on inside your body with clicking noise.
And this in my sick and twisted head is all I can think about as she is pulling samples (Yes, it is from Spaceballs):
MRI and biopsies complete and now a matching metal clip left on the left side to match the one on my right (to ensure during surgery they remove the correct mass). The Radiologist informs me that she had to go pretty deep and that I will be sore, but was impressed by my ability to hold a weird position for an hour and not move (thank you sports!). I however am a bleeder, so she is telling me all this while the nurse has my boob in a vice grip to try to stop the bleeding. Thank goodness for numbing medication. The nurse also leads me into the next room while holding on to my boob, has me lay down so she can put pressure on it (which means nearly trying to shove it into my left lung). The bleeding slows enough that she can put steri strips onto it and I can go have a mamogram to confirm the placement. And first ice pack of the day. I get squished and then have the steri strips replaced and more vice grip and pressure into the lungs to again stop the bleeding. Then I get to go home (and ice for 6 hours). Guess what comes next? More waiting and a PET scan.
I think the news of this week weighed on me more than I thought. My family and I realized we got way ahead of ourselves this week, by assuming that cancer diagnosis to treatment was a linear path. None of us thought that the MRI would lead to anything more than defining things for surgery, just weren't prepared for more tests and more waiting. Lesson learned.
NOT AN APPROPRIATE RESPONSE
That leads me to today. Today before lunch I was yawning, a lot. One of the nurses I work with called me on it and said "You were just on vacation you can't be tired" (background story my vacation was supposed to be the week I had my biopsy and diagnosis and I had previously told her my vacation didn't turn out). She then said "Oh yeah, you never told me about what happened, why you didn't go away". Well folks that simple question cracked me today. In the most inappropriate of responses to a simple question at work (and in the middle of an intensive care unit at the hospital) I respond with "It wasn't vacation, I was diagnosed with breast cancer". Oops. Well, being the wonderfully caring nurses that they are there were some tears (mine) and questions and lots of hugs. I apologized profusely for my very inappropriate response, but they all found it appropriate. Then I pulled myself together and finished my work.
NO TOUCH POLICY UPDATE
As much as I like to believe that this experience has gotten me over my weird no touch thing, I found today that I was guarding my right side when the nurses were hugging me. Cancer be damned, some neuroses are tougher to break.
MRI results are in and.....apparently the left breast was feeling left out. MRI shows possible mass in the left. Awesome. So what does that mean? It means more MRI shirtless fun, but this time with a big needle to do biopsies on the left. My phone call with Nurse Practitioner was choke full of more good news. Because my boobs are so big, the mass on the right is a wee bit too close to my rib cage for the Radiologist liking. So in addition to the MRI biopsy I also need a PET scan. PET scans come with lots of rules, like you cannot exercise for 3 days before, you can only eat protein and no carbohydrate the night before and you can only drink water the day of the test. Basically this is "eh" level news. It means surgery is delayed until everything is fully tested and flushed out. More waiting, but this time with less running (and more ice cream until it's PET scan time).
Below is the song I've had stuck in my head since getting of the phone with the Nurse Practitioner. Feeling a little like Rocky Balboa (minus the whole Apollo Creed dying thing), but ready to fight just still working on identifying my enemy.
Exciting news today. The BRCA 1 and BRCA 2 came back with no mutations! Meaning, no double mastectomy for me. I get to keep my barely A's (and ovaries) thank you very much. Let's keep the good news coming.
Today was the MRI, which basically meant an hour of no moving with an IV in my arm face down on a table with your arms above your head. And shirtless, again. Basically it was similar to plank position, but rest most of your weight on your rib cage. Obviously, super comfortable. Lost all feeling in my left arm. MRI's by the way are very loud and make noise similar to fighting video games. Good news is I am not allergic to contrast and according to the MRI technologist I didn't move so the hour of pictures are good. She told me that they run the contrast photos vs. the non contrast photos through software to identify exactly where the mass is located. This, as I understand it, is so the surgeon can identify the margins (area around the cancer) to take out so that this lumpectomy thing is a one shot deal. No date or time yet, but next up is meeting with the surgeon to schedule surgery. The waiting continues, but at least some progress was made.
Also, while in the MRI I had "Call Me Maybe" stuck in my head. But, with the background noise I think it was more this version:
What happens when your 30 years old and your diagnosed with Invasive Ductal Carcinoma (the most common form of breast cancer)? Well, you blog about it. Overwhelmed by the amazing outpouring of love and support the easiest way for me to keep you all in the loop (and for you too keep yourselves as informed or uniformed as you like) was to just put it all out there on the internet for the world to see.
I had not purchased a new sports bra in 12 years and had continued to use the free ones I got in college. For me and my barely size As, a sports bra is merely a social convention.Anyways, I purchased some compression sports bras and after two weeks of wearing them noticed they were uncomfortable on the right size. After waiting through two periods to ensure that the growing mass was not a cyst (as I had hoped) I finally got up enough courage to go to the doctor. She sent me for a mammogram and an ultra sound. The mammogram showed nothing (dense young tissue), but the ultra sound showed a definite mass. And here is where all the fun begins.
So, there I was laying shirtless on a table with my arm over my head and the ultra sound technician says she needs to get the radiologist. The radiologist is on coffee break, but returns the page and comes in. They take some ultra sound pictures and the radiologist informs me that I need a biopsy. She informs me that my tissue is very dense, I crack a joke about of course their dense have you seen the size of them? The radiologist was not amused. From the ultra sound they send me up to see the Nurse Practitioner, who is beyond lovely. She tells me that this is most likely a fibroadenoma (benign mass), but the biopsy will tell us for sure. However, I am reading the sign in her office and I am not overly optimistic.
Signs of breast cancer:
Can you feel the mass? Check
Has the mass changed the shape of your breast? Check
Does the mass hurt? Check
Is the area hot to the touch? No! (Yay, maybe it is benign)
5 DAYS LATER (AND A WHOLE LOT OF WEIRD ASS DREAMS) THE BIOPSY
So, back on the table shirtless. Biopsy starts off with a win. Left breast is mass free and doesn't need to be biopsied, things are looking up. Next up, the right. After confirming my name and DOB 6 or 7 times 4 samples are extracted. They look harmless floating in the jar (those bastards). They give me a water and an ice pack and its squishy time again! When they take the biopsy samples they place a small piece of metal to mark the spot and they need to check it is in the right place. Well a whole lot of squishing, but the marker is not visible. Finally, the radiologist (a new one with a sense of humor this time) says its ok I can go home.
WAITING PART I
I head back to my parents house and after a night full of ice packs and sleeping through the East Coast airing of the Olympics, I watch the PST showing. Not really sore the next day and Mom and I decided to check out the NH outlets to try to distract ourselves. Trying on clothes the day after the biopsy, maybe not the best plan. However, we are successfully distracted until 1:30 pm.
3:30 PM 8/8/12. THE PHONE CALL
Phone rings (well in my case rocks out). Both mom and I are thinking same thing. Yes! Early phone call, fibroadenoma here we come. Hello Nice Nurse Practitioner how are you today. I'm sorry what did you just say to me. It's breast cancer. I am sure she explained lots of other things to me after that, I know I just asked her to call me when they new if it was estrogen sensitive or not, but I don't think stunned starts to describe it. Through tears I said to my mother "F*ck vegetables, I'm eating nothin' but hot fudge sundaes from here on out". I lied, I had spinach with dinner. I cursed it out and ate it bitterly. But, I did have a snickers bar with dinner.
MEETING OF THE MINDS/THERE IS A PLAN!
Another 5 days later (and millions of phone calls/e-mails with a lot of really really supportive people!) was the meeting with the genetic counselor, medical oncologist, surgeon and radiation oncologist. To say things got off to a rocky start would be an understatement. I had a minor meltdown in the genetic counselors office because she (in my opinion) was taking way to long to get to the point and was simplifying the process a little too much. Lady I have a masters degree, I know you did not just explain what a chromosome was. But, there was agreement that given my age BRCA analysis should be done. Fine. Step one done. Next up the plan. The Nurse Practitioner sensing my full on meltdown mode, sends me and my parents to eat lunch. Then its plan time. First good news of the day, because the cancer is estrogen sensitive at this point I don't need to have chemotherapy unless the lymph nodes say I do. I will just need hormone therapy for the next 5 years and will have hot flashes. Fine I will save money on heat, love it. Next up the surgeon. More good news. I can probably get away with a simple lumpectomy. Yay for keeping body parts! If my lymph nodes cooperate then it will be a more simple surgery and I'll only miss 3 days of work. If the lymph nodes are cancer free then it is on to radiation for 7 weeks. The radiation oncologist looks at my fair skin and basically prepares me to be burned. More good news they make a cream for that and she recommends I start using it now. It's called Jean's cream.
TOM PETTY WAS RIGHT:
Up next MRI and meeting with the surgeon. Looking forward to getting the ball rolling on treatment because frankly I am tired of singing Tom Petty on endless loop in my head. My energy level is good, sense of humor is fully intact and I started back running this week. Thanks for all the support, and I'll post again by the end of the week.