Yesterday was a perfect summer day. The temperature was in the high 60's, low 70's around race time and the turnout was phenomenal. Team NED has never been so large in numbers or in spirit. And yet somehow I came home without a photo of the team...team captain fail.
The race itself was great, it is much easier to run without a belly full of buttercream frosting! I ran better than I thought (can still get under 8 min/mile for a 5K). But, what was so great was all the people out there in the Team NED tshirts. My parents, my boyfriend, my good friend from elementary school, her sisters and their children, my good friend from middle school, my track teammate from college, her husband and their children, and a couple of great Lahey Dietitians and Speech Language Pathologist thrown in for good measure.
My sister in law and brother organized an amazing turnout of virtual runners online. I got to spend the rest of day with a constant stream of updates from folks supporting Team NED and going for runs from Arizona, Colorado, Ohio, Texas, South Carolina, and Pennsylvania (a strong presence in PA).
How great is that? Support from around the country and lots of people going for a run!
Because of all the Team NED participants, our bake sale, and generous donations from family, friends, and the Kelly Care'sFoundation Team NED raised over $3,600 for the Lahey Cancer Centers. This, I think is the most money the team has every raised.
I am grateful for everyone who came and out, those who virtually ran and all those who donated.
Thank you for making yesterday such a great day and having an excellent celebration of all things NED.
I have painted my toe nails since I started running competitively (since I was a freshman in high school). I have some pretty ugly runner's feet and have long had weird or missing toe nails. Sometimes when a toe nail would fall off, I would paint one on with multiple layers of nail polish and no one would be wiser. I would occasionally go the winter months without polish on my nails, but for at least 9 months out of the year there would be some color on there.
Post chemo, I sill had black spots in my fingernails even a year after treatment; for almost an entire year I painted my finger nails too. During this year, I was investigating all of my food sources looking for potential causes of harm, looking at sunscreens and lotions, handwashes and toothpaste. It never occurred to me to look down at my nails.
Last October, the Environmental Working Group (EWG) in collaboration with Duke University released a study using 26 women (small number, would have like to see more than 30) on chemicals in nail polish. In particular, the study was looking at Triphenyl Phosphate (TPHP). TPHP is suspected to be an endocrine disruptor. This study tested the urine of the 26 woman after they painted their nails and found an increase in the TPHP levels within half a day. That is a pretty short turn around to be able to find it in the human body. TPHP is also the same chemical used as a fire retardant and is used more in polishes that are chip resistant.
The EWG compiled a list of all the nail polishes that contain TPHP here. Knowing that there are possible endocrine disruptors in cosmetics does give me further pause before I put anything on (which is a very rare occasion anyways). Knowing that I was spending a week on vacation where I spend most of my time in bare feet, I let my feet stay ugly. I threw out all 24 bottles of nail polish prior to vacation. It freed up a whole drawer. Maybe busted runner's feet will become the next big thing for summer? A girl can dream. But, for now they will stay unpainted.
Thursday was mammogram day. Always a pleasure. I made certain to not put on deodorant and wear a cotton shirt for my 10:15 am appointment. It was a busy morning at work, so I was running around trying hard not to sweat.
I managed to not be stinky by the time my appointment came. The volunteer who called my name to bring me into my appointment was likely about 80 years old. When I stood up she looked surprised and asked me to verify my birthday a couple of times. She realized I was a repeat offender when I told her I hadn't put any deodorant on for the test.
I put my pink johnnie on and sat in a room full of anxious women. What I realized was I was not one of them. I was not anxious. After having all of my testing in March I felt pretty confident that this was just another box to check off. I was not looking forward to it, but I was not concerned (which is unusual for me).
They called my name, I have a new to me mammogram tech and I tell her that I have markers in both breasts. She is reading through my sheet and states "I see you didn't check of the family history or any genetic markers, how...why....just some bad luck..." and she trails off at the end of the sentence. I think my age and history has thrown her off a bit. She is not the friendliest of techs, continually telling me to move my feet and getting frustrated with where I am placing them. I really wanted to tell her "look, I have my face pressed up against a plastic shield, I have my barely size "A"s inside your vice (which at one point had 13.5 pounds of pressure to flatten them), could you just say please!". But I didn't, mostly because I can't really breath, never mind make sentences while they take pictures. Friendly or note, she got great shots on the first try; only 3 vice grips per side. The radiologist cleared me to go and I went up 4 floors to see my surgeon.
My surgeon walks in and says "Can you believe it's been 3.5 years since I did your surgery? That's crazy". That fine surgeon is an understatement. Let's keep those years piling up. I tell him that myself and my oncologist had been worried about some thickening at my scar. He does the physical exam and tells me that it is just natural surgical changes. He lets me know that if I do feel like it is getting bigger than to come back and see him and he'll biopsy the site. However, he feels like he doesn't need to see me until next year. How's that for piece of mind? I'm pretty excited.
As per usual I was sore the next day from being in the vice. One of my colleagues sent me this in honor of the day:
This past week was one of my absolute favorite days at work. Bake Sale Day. As dietitians my lovely colleagues and I love to bake. A lot. And then when you add in for a cause, we get a little nuts. Above is a photo of me hamming it up at 6:45 am as we were setting our table up.
Here is a wide shot of our table and all it's glory:
That is a lot of great stuff. We were again raising money for the Lahey Health Cancer Centers. Our online email weekly newsletter ran a little story on me and my breast cancer journey through Lahey and helped promote our bake sale to the hospital. It was really great of them and many people through out the day stopped by to congratulate me on continuing to be a survivor and a couple even asked me if I was Sara. It was great.
However, two visitors to the table really touched my heart.
The first told me she was a survivor out of the Lahey cancer center and how proud she was to see us out there. I told her I was a survivor too and we exchanged congratulations. She bought her baked goods and left with a giant smile on her face. We each had a reminder of the gratitude that comes with being a survivor. That, and she had also bought one of the giant chocolate chip cookies I had made.
The second visitor was my absolute favorite. She was decked out in pink and black with a baseball cap. She had just the slightest hint of peach fuzz underneath. She came to the table and asked what time we were there until. I told her 3. She said "Great, I'll be back after my treatment". I waited patiently for her to return. When she did, I asked her how her infusion went. She told me "I"m used to it by now. This is my 3rd cancer, and unfortunately this time it's not curable". She then went on to tell me how she used to do bake sales to raise money for the cancer center herself and how much she missed doing them. She was grateful that we were out there and was hopeful to see us again.
She is the reason we were out there. She was the reason that I decided at 5 am to throw an additional batch of cookies in the oven because I felt we needed just a little bit more. Even though I had already made 3 dozen donuts, 2.5 dozen peanut butter cups, and a couple dozen each of blueberry muffins, oatmeal raisin cookies, giant chocolate chip cookies and very carrotty carrot cake cupcakes I knew I could squeeze in a couple dozen more.
My colleagues fully understand how important this fundraiser is. You can see the amount of work and effort put in. And we raised $1,084. With baked goods. I'm still floored.
With testing and good results behind me, it was time to party. I've been delayed in posting this, because since I had the party and the relief of the results I've found I really like to sleep, a lot, right now. A fun bought of laryngitis also added into the mix didn't help.
Here's how to part like your NED.
Step 1) Be overwhelmed with the gratitude that comes with a clean bill of health
Step 2) Boob cake
This is a S'mores cake. I decided that it was appropriate because it is irradiated, much like my boob. Ok so not really irradiated, but rather flame toasted, but you get the idea. (Not to toot my own baking horn, but this cake was delicious. My completely unbiased boyfriend said it's the best cake he ever had. I'm holding him to that).
Step 3) Invite all your co-survivors and put out a spread for them
And because you have amazing co-survivors and an amazing support system these fine folks send you flowers like those seen behind the boob cake, or they make things like these:
These are mammo-grahams. They are almond paste smooshed between graham crackers. They are hilarious and delicious.
Step 4) Have a great time catching up with everyone and catching your breath. It's not ideal to live your life from scan to scan, but you sure can cram in a whole lot to a year.
I gave myself a little break from researching breast cancer stuff to give my mind time to quite down. It's now primed and ready to take a look at all the fun stuff out there about endocrine disruptors, pesticide residue on food and some of the new testing coming out for breast cancer. Getting ready to dive in!
MUGA SCAN
Today started out with me needing the IV nurse and it was a good omen. I know, needing someone to place a needle in you, usually not a good omen, but this IV nurse who I had noticed that she wears a pink ribbon on her coat decided to tell me her story today. While being well aware of my "left arm only" need she told me that she ended up needing a bilateral mastectomy and that she decided to go with the arm that had the least amount of lymph nodes out. She slid my IV in without a problem and then told me that was 17 years ago and she's been cancer free since. I told her she was giving me such hope. We chatted about why I needed the IV (routine follow up for the PRESENT study) and I told her the details of the study. I thanked her for her sharing her story with me and took it as a good start to the day.
With IV in hand (well, literally it was in my left hand) I was able to get my PYP injection and then the technetium 99 for my MUGA scan. In preparation to have my heart checked up on and to plump my veins up I drank some extra water in this morning and that would be a decision I would come to regret. As they strapped me down to the same machine that had scanned my bones (and I previously interrupted because I had to pee so bad) it was the same student as before. First two scans are easy, the third and final scan involves my arms over my head. A very uncomfortable position for me to start with. Even more uncomfortable since all the scanning last week hurt my back (34 going on 104). And to add fuel to the uncomfortable fire that was scan #3, I really really had to pee. So much so that you could see my heart rate continue to climb as I tried hard not to squirm or call out. When the student came in I told her and she helped hurry me out of there. She made certain to give me my "I'm radioactive" on purpose card so that I can enter Federal buildings with documentation as to why I'm setting off the geiger counters. Note to self, no flying too close to having all the scans.
The Results
To say waiting for my scan results and things makes me a little cuckoo would be an understatement. But the time had finally arrived for my oncologist to give me the results. After an uneventful blood draw with only 4 tubes and more urine (theme of the day apparently) my oncologist walked into the room and said the greatest line ever
"Everything looks good."
When you've prepared yourself for whatever news is coming down the pipeline you sit there a little stunned at first. And then like when the Grinch realizes the true meaning of Christmas (you know a little late to the game) the perma-smile creeps over you face.
And let me tell you it feels like Christmas morning. I did tell my oncologist a couple of my concerns, my on going back pain (outside of hurting it with scans) and that I really felt the scar tissue under my scar was getting bigger. She inspected the scar and said she thought that if it had changed it was very minuscule and that she was hesitant to expose me to more radiation via diagnostic mammogram and ultra sound (she would do it in a heart beat if they would allow for just an ultrasound). I asked her if I was being a crazy person.
She said and I quote "You are not being a crazy person".
Banner day for me here. I'm going to have t-shirts made with that printed on it. We decided that because I already was going to have a mammogram in the beginning of May and have physical assessment with my Surgeon that day, that it was reasonable to wait. I agreed. She said when she went back and read her previous notes that that there didn't really appear to be any worrisome changes. She tole me if I changed my mind, to just get in contact with her.
She said the my bone scans were great, MUGA (heart scan) was still the best she had ever seen and that there was nothing on my CT scan. She said my labs looked good, iron deficiency anemia has gone away. Yes. And I was cleared for the LAST round of injections
Finishing Up the Vaccinations
Once I was cleared to have my vaccines the research nurse got the order down to the research pharmacy. I asked her for written copies of all of my scans (as if it weren't true and that it would somehow go away) and we chatted about upcoming vacations and how my niece is doing.
Then she prepped my leg with alcohol for one last time. There was a new research RN who was there training and she was finding out what a quirky patient I was. We told her about how I request that my injections be done in a square because the engineer in me really liked the order. She gave me a polite nod. And then came time for the shots.
Damn I forgot how much those stung. But, just very briefly. They do swell rather quickly after. We celebrated my completion of the trial!! Yay!!!
And then I realized....I totally forgot to ask about what my follow up would be now. I was too excited. She told me she would look at the protocol and email me. (Scans annually, blood work every 3 months) I can totally do all of that. I was way to excited about being NED and finishing injections.
Now just to document the swelling and redness in the leg for 3 days. It's a small price to pay for what seems to working. Let's keep it going. I want to be that IV nurse telling some other survivor about how 17 years ago I was once a guinea pig for the standard treatment that is the breast cancer vaccine. Life goals.
And now I realize how tired I am. I think I will celebrate with an early bedtime and throwing myself a party. And baking a cake and dancing to some Bon Jovi. Yup, that seems like a good week long celebration.
Today was a day filled with scans and tests in preparation for the last round of injections of the PRESENT trial on Monday. I have had my crazy pants on for quite some time, but they really escalated this week with the dread of having to drink mochaccino flavored barium. Earlier in the week I put my laundry in the dryer and forgot to turn it on. It is definitely less effective this way. My intake of chocolate has also increased. I may have been eating it to protect against the down trend in chocolate consumption that usually follows mocha flavored barium.
Because last year they wouldn't let me have a CT scan without my urine test, I made sure yesterday to get that done ahead of time. I did this in order to minimize the interruptions as I had fairly tight schedule today:
8:45 am injection for bone scan
9:00 am arrival at CT scan for drinks
10:00 am CT scan
11:15 EKG
11:45 bone scan
The day started out with an IV placement, which is always an adventure for me. There was a student in nuclear medicine and I am sure they saw my age and thought that I would be great patient for her. I told her that I was a left arm only and you could see her be startled a little bit. I pulled up my sleeve and let her know that I am a known hard stick. She turned on her heels, looked at her preceptor and said I don't think this is a good idea. I appreciate her unwillingness not to stick me 100 times. Her preceptor than tried and failed. They were getting ready to call the IV team when my usual nuclear med technician came in. She asked me about how work was going, grabbed a hot pack and had an IV in me in under a minute. She than asked me when I was coming in for my MUGA (heart) scan I told her I would be in on Monday. Only two sticks, starting off with a win. They injected me with the radioactive technetium and I was on my way to the next appointment.
Next up, I headed over to CT scan with the impending dread of what the barium does to my GI tract. Checked in and sat and waited for them to walk in with the the liter of heavy chalkiness. And then something wonderful happened. The CT tech walked in with a 1 liter plastic cup filled with a clear liquid. Now, as I couldn't have anything to eat or drink after 6 am I am super thirsty and wondering if I might be hallucinating at this point. I ask her with the enthusiasm of an 8 year old in a candy store "No barium!?!?" and she responded "Nope, they've phased it out". I checked my wrist band 6 times to make sure I was registered for the correct test and every time it said CT abdomen, pelvis and chest. This was really happening. I tasted the omnipaque (the clear liquid contrast that I had to drink) and it tasted like stale water with a slight hint of pen. But, it was light, it didn't cause me to gag and was easy to drink over an hour. My excitement over not having to drink the barium was hard to contain. The other folks in the waiting room were likely confused by my grinning and happily drinking the giant container of clear liquid.
During the CT scan there was some difficulty with my IV and the tech needed to hold it in place while the contrast was injected, but it didn't infiltrate and I still felt like I was peeing my pants, so we knew it was working. You know what the best part was, I didn't have to drink any barium! They were happy with the pictures and I was on to my next test.
I went up 3 floors to have my EKG done. The EKG tech asked me if there was anesthesia in the test I just had. I told her that the contrast dye just made me feel a little weird. She told me as she was locating all of the clips that her husband was allergic to contrast dye. By the time she was done telling me this, she was already unhooking everything because the test was done. I forgot how fast those were.
Because I didn't have to drink barium (did I mention that) I went and got a snack and started drink water to flush all the contrast out of my kidneys. I may have been a little over zealous with drinking the water. The grand finale of Scan Day was my bone scan. The student was back to get me all set up. She was less timid this time. She set me up for my first scan, which involves the machine being 1 cm from your face to start with as you move along a conveyor as they take the pictures of your bones. As I was watching the machine slowly come away, I started singing in my head, Gloria Estefan
And as I watched my bones assemble on the tv screen (still makes me think of Mike TV from Willy Wonka) I could see me exceptionally full bladder light up the screen. As I tried not to squirm so they could finish the whole body scan, I asked the student that before we did the chest scans if she could let me go pee. After she undid all the straps (yes they strap you down) I sprinted to the bathroom and then came back to get strapped down and have my chest scans.
And then I was done. No mochaccino burps. Free to drink water without being strapped down. Free to take a nap.
Now all I have left is a heart scan and a round of injections and then I can be declared NED. Monday at 3 pm will be glorious.
