Saturday, February 18, 2017

Free Breast Exams - 2/18/17

Gotta love him, Ben that is. He asked that I put his phone number on the blog in case anyone needs a free breast exam.
Thoughtful!
We had another long day in Syracuse yesterday. The MRI was at 6:45 a.m. so we had to be there by 6:30, which meant leaving our house around 4:45 a.m., fun! But the roads were far better than the other two trips. I slathered on some coconut oil/Shea butter cream to help lube me into the MRI tube, Ben checked on a new calf and we were on the road.
The MRI was intense! The damn thing looked hardly any bigger than the last one, but the apparatus I laid on was not so high off the table, so I FIT! There's a lot of snapping, whirring, whatever the other noises were and my muscles started twitching along to the beat. They give you little breaks, which is appreciated, but you're still stuck in the rabbit hole. The music was not ideal, I guess I should have chosen a different genre, but I closed my eyes and TRIED to think about different things.
Somehow the woman who put me in the machine was not the woman who took me out 20 minutes later, which was a little startling. Plus the woman gave me pants that were far too big (my shoulders and belly are big lady, but these pants just wouldn't stay up. So I snatched a different pair before they put me in.
There was some random dude in a carhart and muck boots with earphones in standing outside the MRI room when they took me in. He was talking to a couple of staff members and the nurse who took me in gave everyone a dirty look and I think he scrammed, hopefully.
We went a few doors down to the Numann Center after and waited a long time to see if the Radiologist wanted us to come do any more ultrasound or biopsies. Tammy (the pit bull NP) kept checking on us and they ended up having me do another mammogram. I am enjoying the terrycloth robes vs the slightly oversized napkin I had to wear in Cortland.
Then I went to see Dr. Albert again...
The biopsy came back positive for cancer in 2 lymph nodes, but the original biopsy came back positive for a 3rd hormone receptor, HER2. While the lymph node diagnosis isn't good, the HER2 diagnosis is a mixed bag, bad in that it is usually more aggressive, but good in that in the last few years they have found treatments that it is usually very receptive to.
Dr. Albert says that at this point we are probably calling it a Stage 3, based on the size of the mass and that there are at least 2 lymph nodes affected. BUT he's still awesome and upbeat. He also noted that we would probably be doing radiation, but that recent studies, and an ongoing trial I would qualify for, show that I would probably not need a radical mastectomy, meaning I could keep my lymph nodes.
Why keep affected lymph nodes?
Lymphodema is a nasty disease caused by removal of lymph nodes, which results in swelling and pain in the arm which can make daily tasks very difficult.
That's still a decision to be made.
Dr Albert also had already made arrangements with Dr. Zeva (a longer name but that's what she goes by) for me to see her at the Cancer Center that afternoon. Dr. Zeva is the Breast Cancer Program Medical Oncologist.
We grabbed lunch, I felt like a slob eating at a decent restaurant because I had dressed for a 6:30 am MRI, not a hot date in the city. And remember that coconut oil I slathered on? I think I must have touched my hair after I dried it and my hair was looking like I hadn't showered in 3 days.
Anyhow we went to the swanky Breast Cancer offices and met with Dr. Zeva, and a Radiation Oncologist, Dr. Shapiro, and residents for both doctors. So I got examined 4 times, yay!
Game plan: 1 round of chemo every 3 weeks for 6 rounds, then surgery.
Dr. Shapiro was recommending a study where they don't do radiation on half the patients after surgery because they think it may be unnecessary if the cancer responds well to chemo. I have consulted my familial medical expert and he has been calling friends in faraway places for advice. A world-renowned Radiation Oncologist is telling him, NO, do the radiation, I'm too young to take that risk, and I was questioning that as well.
I have to have a PET scan (my insurance is already throwing a fit about this), and Echo Cardiogram and get the port put in before my next appointment on March 6th to start Chemo.
I am now considering trading in my BUS (aka suburban) on a smaller SUV for my frequent trips to Syracuse, and even more locally for radiation. Plus we would hope to upgrade Ben's truck at the same time to allow more flexibility for transporting kids. If you know anyone who can do a good two-fer (how do you write that?) let me know!
Still trying to stay upbeat, even as the news is a little more intense. Please help me stay upbeat! The more boob jokes the better!

Thursday, February 16, 2017

Linebacker Shoulders - 2/16/17

The weather was SLIGHTLY better for another trek to Syracuse this morning. BUT my MRI was not a success. We did a "dry run" of the MRI at Upstate's Community Hospital and it was not at all successful.
If you've had a breast MRI before you might be able to follow along, if not you need to use some imagination...
This is an old MRI. It was yellowed plastic and the tube your body goes in is tiny and it looked like there was some loose seam tape dangling, but the gentleman, Mike, helping me was extremely kind. There is a tilted chest plate with 2 holes for your boobies to dangle through, a face pad for you to rest your head on and the chest plate is elevated about 6-8" off the table that slides your body into the tube.
We attempted our first "dry run," as Mike called it, with my gown still on and he slowly slid me into the tube, I thought 'this is fairly comfortable', similar to a massage table, except for the boob holes (but massage tables might want to think about incorporating those because it was more comfortable). Then my shoulder hit the top of the tube...
Mike stopped, slid me back out and apologized profusely for the machine, saying "this happens all the time."
Dude, I know these machines are expensive, and I'm an overweight linebacker, but I think it's time for an upgrade!
Mike said we were going to try it one more time, all the while some random employee stood silently smiling a little too much with an "I told you so" look on her face. I was told to take a few deep breaths and reach my hands further over my head...this time the top of my shoulder just brushed, but by my shoulder blade I was wedging into the tube.
Back that lady out before she gets stuck like Winnie the Pooh going in and out of Rabbit's burrow!
Anyhow, lots of apologies later and phone calls to other offices and the Nurse Practitioner at the Numann Center, who is an intense hoot of a lady, promised me a spot back at their office complex first thing (earlier than first thing) in the morning with a different MRI, plus the ability to meet with the radiologist to do any further tests right then and there.
Mike was so nice, he led us back through the hospital to the Wellspring Breast Center where I would have the lymph node biopsy and Mike stopped in to beg a plead with someone to do an MRI for me before the biopsy. He was too softspoken and sweet, not like Tammy the NP who sounds like quite the pit bull when it comes to scheduling (kind of reminds me of my coworker Karen ;) so no MRI today.
Anyways I was an hour and a half early for this appointment but they still took me in. I had to be pulled aside and shown the ties for my gown hanging on my butt because I was just wandering around holding the damn thing shut. I had searched for ties, but hadn't found them. After quite a few minutes of deep breathing exercises to keep myself from crying in the waiting room I was called back by yet another SUPER nice nurse.
I forgot to tell you I had a Valium tablet in my purse I was supposed to take when I was done with the MRI because I was pretty anxious about the biopsy. My fear was related to the pain (this time we were going to try something other than lidocaine) and the "gun" they use to take the tissue sample startles me (I have a fear of balloons, guns and any loud abrupt noises - I tweak out). Well with the hubbub of the screwed up MRI I left that pill in the waiting room with Ben, and then convinced myself it was too late anyway to take it, I told myself if I took it now I would still be nervous and jerky for the biopsy, but then drooling and nonsensical on the ride home. Plus I had taken an L-Theanine supplement to help with the nerves earlier that morning.
I did freak out!
One node sampled. Not too bad.
"Your nodes are lower than you would think" - Must be those misplaced nipples told the lymph nodes that the weather was better down south...
Digging deeper for a lower node...OUCH! Snap Snap...me jerking and blubbering on the bed. The radiologist was super nice, as was the nurse who's hand I was clawing. I guess they think they went deeper than the numbing medicine and eventually I calmed down so they could put in their twisty metal marker so the biopsy site will show up on imaging.
I survived, no valium!
The radiologist, who coached my breathing to help me stop wiggling while I blubbered, explained that the pain made my emotions about everything come flooding in, nerves about the procedure, confusion and sadness about the diagnosis and the unknowns of it all. I felt less like an idiot and more like a brave linebacker, I weathered the biopsy, and came head to head, or shoulder to tube with an MRI machine.

So today is done, tomorrow an MRI, hopefully, and more bright spots.
A few bright spots glimmered throughout the day and just after we got home my dear co-worker had fixed a bunch of lights in our milking parlor so you need sunglasses to milk cows now. Plus a farm employee was willing to cut her date night short to come milk tomorrow morning so Ben can drive Miss Daisy to Syracuse again.

I promise shorter posts soon, but it's quiet in the house with Ben at the barn and the kids are staying with Grandma and Grandpa since we have to leave before dawn, so writing on the computer is a pretty relaxing gig.

Put on your pads and play like a linebacker!

Tuesday, February 14, 2017

Touch Your Boobies

It's been a long week! 

I am revitalizing the blog as a way to connect with friends and family during our breast cancer journey. It has been 5 years since I used this page! The warmth and support of all the texts/phone calls/visits are wonderful, but I needed to find a way to give people a consistent update (I can't remember who I told what to) and I looked at setting up a Caring Bridge site, but it seemed silly when I already had this blog set up. Sorry if you found this blog looking for farm stuff and ended up with this!
So here we are, less than a week into a breast cancer diagnosis. 

Here's the very long-winded story:
I have a lump in my left breast, Ben is taking credit for the find. I didn't think it felt like anything for the first few weeks, until one morning it bothered me and I felt it again while getting dressed for work. This time it was substantial and nearly visible as a bulge.
The next day I called my midwife and friend, Mary Borra, and her staff scheduled me to come in to the Cortland office the following week.
Mary checked me out on the 7th of February and quickly decided to call the Cortland radiology department and see if they could fit me in while I was already in town. They did, and in retrospect I should have noticed some oddities in the requests for second images or constant chatter from the woman performing the ultrasound, but I naively kept thinking I just had a cyst. 
Mary met with me as soon as I was done with the imaging and once she received the results she shared the news that the mass was highly suspicious and asked if I would be willing to meet with a surgeon that she trusted very much. We, Mary and I, went into the pouring rain back to the hospital where we were quickly seen by Dr. Cotie, the surgeon. Mary acted as my surrogate mother for the beginning of the appointment and has been supporting me throughout this.
Dr Cotie was frank, but very caring, and explained that this might be a long road, but we would try to get answers quickly. He helped me get back out of the building and left me on his way to track down the radiologist to try to schedule my ultrasound guided biopsy. Within a half hour the hospital had called telling me to arrive at 8:45 the following morning for my biopsy. The next morning I was told that nurses actually saw Dr. Cotie running down the hallway trying to catch the radiologist.
We got through the biopsy with only one of us getting light headed, and hung out in Cortland for the day so we could attend a Farmer Discussion Group put on by CCE, which was a nice way to end a long day, laughs and good conversation with our peers.
Two days later, Thursday the 9th, Mary called. Our poor General Manager, Ryan, happened to be sitting in my living room along with my parents for a Officers meeting for Home Central. He didn't know what he was in for!
Mary called to say that, while pathology was not complete on the sample, it was/is Ductile Carcinoma and that we needed to start picking out an oncologist. 
While I was more than happy with the care I received at Cortland, and Ben and I can't say enough good things about the people we met there, my gut said I needed to go elsewhere. 
With some help and guidance from Uncle Ivan (it's nice having a doctor in the family) and his colleagues, we decided to go to the Patricia Numann Breast Center at Upstate Medical. I called their office on the morning of the 10th and by that afternoon Mary and her team had my records sent to the center and they called with details of my appointment for the following Monday.
It was a long weekend! But I explored my family history a little more and learned of other unlucky ladies on the Gowan/Ward side with histories of cancer. 
Monday we trekked through the snow storm to Syracuse and met with Dr. Albert, a surgical oncologist, and his colleagues at the Numann Center. We really thought highly of Dr. Albert's demeanor and knowledge. Ben says he has the three C's: he's Caring, Compassionate and Competent. 
Dr. Albert wanted more imaging of my lymph nodes, so they fit us in for that while we were in the office. Upon watching the ultrasound, Dr. Albert recommended a lymph node biopsy this week to determine if the nodes have been affected. They were swollen on the imaging, but that could be from the biopsy the previous Wednesday, and the walls were thickened.
We also met with a plastic surgeon on the Numann team and he gave us the run down of what reconstruction would be like and reviewed ME to see what he could accomplish :) 
I learned a few things... my nipples are in the "wrong place" for an under the boob incision. Apparently boobs shouldn't act like they are scared of heights! 
Second I learned that when someone asks if they can take your picture to use in your records in case we do reconstruction, be prepared for full-on glamour shots! No DMV stuff here, no webcam, but big camera, multiple light screens, back lighting, posing, everything except rouge and a feather boa. 
Third, I don't know what I learned, but I held my first fake booby and I saw more pictures of topless women than most 40 year old bachelors. 
What a day!
We met with Dr Albert again before we left and discussed the possible options for treatment and each step of the way I felt more confident in the idea of a double mastectomy and reconstruction. Dr. Albert suggested we opt for genetic testing, which meant one more stop at the lab for a blood sample. By the end of the day it seemed more likely that chemo would be in my future and that I have a preference is for a mastectomy instead of a lumpectomy. 

Today, Tuesday the 14th - Valentine's Day, I was told to come back to Syracuse to their Community Hospital location for my lymph biopsy and MRI at 9 am on Thursday the 16th. 
I am eager to get that done and over, but not eager for the biopsy as I don't care for lidocaine and I find it does not do it's job beyond skin deep, but that is a minor hiccup.

The kids are aware that Mommy has cancer, but Will is the only one who seems to understand that there are more implications than your normal cold or flu. 

We are confidently optimistic, but at the same time worried about the here and now implications for our family and business(s?). I don't fear for Home Central, the crew/family there are an excellent team, and myself, and sometimes Ben, serve more as a small rudder guiding the direction, than as integral components in operations. The farm however is a younger entity, with ample debt, rapid growth and inconsistent labor. 
We have a great support network, including family, friends, co-workers, former employees and farm professionals/vendors. Thanks for being who you all are! 
Ben has been fussing over a manure pond that's nearly overflowing, but tonight a former employee stopped by and helped Ben & Ricky (Ben's cousin) get everything hooked up (a pretty big project) and ready to go. Ben's comment when he walked in the door a few minutes ago was "sometimes that little old man makes me feel so much better" to which I responded "why, faith in the world?" Ben said, "faith in the world and it's nice to talk to someone with a positive attitude at least once during the day." There are a lot of bright spots in the world if you take your sunglasses off and actually look around. Ben and Dan, our former employee, have had numerous times when they didn't see eye to eye and were tired of working side-by-side, but Dan has been a blessing to us. He seems to show up on our doorstep when things feel bleak, and he brings experience, positivity  and kindness to brighten the day. There are so many people like that surrounding us, I can think of about a dozen that impacted us just today, whether they knew it or not.
I'm prepared to keep my eye out for the small acts of kindness each and every day.

I hope to not write so much each time, but this was a catch up for those who haven't been privy to the numerous texts, emails, phone calls of the last few days. For a non-communicator like me it's overwhelming to have so much interaction and so little "quiet" (digital or otherwise) time. I've never been good at staying in touch, so maybe this tool can help me along. 

Thanks for all the love and support, for real!