Monday, March 28, 2016

Still NED!!

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. 


Thursday, March 24, 2016

Barium Free Scan Day

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. 

Tuesday, March 15, 2016

New Heroes

Did I mention that I have amazingly generous friends?

Last night a good friend from college and her husband invited me to attend the Irish Eyes are Smiling Gala in New York City (above is a photo of the two of us at the event). The event is a celebration of  the Kelly Cares Foundation and the major donors and people who exemplify the foundations principals of Health, Community and Education. The foundation was founded by Notre Dame head football coach Brian Kelly and his wife Paqui Kelly.

Paqui Kelly is one of my new heroes. She is a two time breast cancer survivor and through her battles she found that her overwhelming gratitude for the amount of support and the level of health care she received inspired her to create  the foundation to help those who were not so fortunate. The foundation supports causes that support Health Initiatives, Community Development and Educational and Educational Institutions and Programs. These initiatives included the Paqui and Brian Kelly Comprehensive Breast Center in the Saint Joseph Health System in Indiana. I was fortunate enough last night, to be able to meet Paqui. My friends let her know that I was a survivor, and we do what survivors do. She asked "How long?" I replied "3 years". She smiled and said "8 years". And then she said something to me that was so poignant and really resonates with me this month as I battle the FOR.  She said to me "Keep checking those days off, one day at a time". And that is what March has been about as I approach "Scan Day". Checking off one day at a time.

My other new heroes who I didn't get to meet, but were introduced to their story was the Enright family. The Enright family started the KeiraSTRONG foundation to help families of children undergoing treatment for cancer and life threatening illness. Another example of people so grateful for the support that they received during Keira's treatment for Leukemia (she was diagnosed at age 7, she is now 12 and in remission) that they created a foundation to help pay it forward.

The entire event left everyone inspired to be able to pay it forward.  It also ended with a intimate performance by Jon Bon Jovi. Folks, I was 15 ft away from the man. I was freaking out a little bit (nope, that's a lie. I was freaking out a lot and singing along probably very annoyingly to all those surrounding). It was a great way to cap the night.

So, as I continue to check of days of survivorship I will drink out off my new set of glasses every morning and think about how I can pay forward the amount of support and good fortune I have had. (And will continue to rock out to Bon Jovi while I bake). I have so many things to put in my gratitude journal, thank you friends. 

Saturday, March 5, 2016

Keeping the FOR at bay

My bone scan, CT scan and EKG are on March 24th. My heart scan and last round of injection shots are March 28th. My crazy pants have been on since February 24th. Which means sometimes I am normal (well, as normal as I get) and sometimes I am obsessively checking the scar tissue at my incision site. The lead up to scan day also means that my house is spotless. I clean to de-stress. Today I cleaned my house for 6 hours. I scrubbed my tub, cleaned and reorganized my pantry, washed all the throw blankets, and steam cleaned my floors. I also blared some Bon Jovi while doing it. Boogie and cleaning makes for a great workout. 

I also like to schedule myself like crazy leading up to my scans; might as well channel the energy into productivity! In the next 3 weeks I will be having brunch with friends, taking a trip down to NYC to visit a good college friend, going to see a Bon Jovi cover band, celebrating a friend's birthday, throwing a baby shower, attending an alumni board meeting and trying out a new gym. 

And you know what helps even more, when you have great friends who send you this in the mail: 

A card and a magnet with my two favorite quotes. One from Stuart Scott "You beat cancer by how you live, why you live and the manner in which you live" and one of my new favorites that I found this past year "Don't let the FOR (fear of recurrence) ruin your QOL (Quality of Life)". I have hung them on my magnetic chalk board so that I can look at them every day and remember not to let the FOR take over.