Monday, April 27, 2015

Declared NED


Today I reviewed the results of MUGA, CT and bone scan with my oncologist. She said they all looked great. 73% ejection fraction for my heart, meaning it is working well. CT and bone scan showed nothing! Love it!!

Before I got all the great news today I started with and EKG. Now, I don't know how to read these things but they gave me a copy to bring to the doctor. It looked like she had printed a sample. I was  pleased, especially because as the tech asked me to relax they decided to test the fire alarm system in that clinic. Very relaxing with buzzers and flashing lights. But, the end result is was as it should be. Normal EKG.

This morning the research assistant gave me a heads up that the 2 year study kit involved 7 tubes of blood. I decided to drink and extra liter of water, thanks to that heads up. Then my oncologist needed 2 tubes and I still had 3 tubes to go to my PCP for tests from my physical. So that brought the grand total of tubes of blood needed to 12. And then some urine. Well, I am happy to report my veins cooperated and one stick and she got all 12 tubes filled. We chatted for a while as my blood trickled into all of them. I think  I need a hamburger after those tubes.

Also, needed this morning was more urine. The study didn't want to take my negative HcG test from Thursday. Well, guess what it was still negative today.

The one dicey moment this morning was during my physical exam. My oncologist was pressing a lot on my scar. She found a spot that was sore when pressed really hard. She asked me if that was abnormal. I let her know that it wasn't and that it felt the same way it always does, which is slightly uneven. She also noted that my rib was right under there. We decided to move on and that clean CTs and bone scans were great news.

Flying high on the good news of clean scans the next up was the four intradermal PRESENT study shots. The research nurse continues to give me a hard time about requesting the shots to be in a perfect square, but she is always happy to oblige. The shots stung like the Dickens. She apologizes with every shot. She said she thought it was the Luekotrienes (immune booster) that burned on the injection, I told her I like to think its the actual vaccine that makes it burn. She smiled and agreed. Because neither of us will actually every know.She put some tape and gauze on it to protect the four areas. Well, by the time I got home they had swollen and busted out of the tape and had created a mega quad. I look like someone who can single leg squat 200 lbs, but only with my right leg.

Then after the injections and basking in the glow of clean scans, I realized something. I am officially out of adrenaline and holy crap on a cracker I am tired.

But, never one to pass up a chance to celebrate I wrote in my gratitude journal today "Today I am grateful for CLEAN SCANS" and then I had a pint.

Pint of gelato. Toasted Almond Gelato. To be followed by pizza. I know, what a wild woman. And I may or may not be buying myself a running gps watch, but more on that and other things to come in the next year after I sleep for awhile. Hey, maybe I'll sleep through the night. A girl can dream.

Here's to clean scans and no more mochaccino flavored anything.

Oh, and one more test this week. The full contact mammogram. I'll make sure to stretch this time.

Thursday, April 23, 2015

Mochaccino flavor, still, still ruined

Today was scan-o-rama day. It was as much fun as I anticipated.

6:43 am 
I run down my bus. It was 8 minutes early. Thankfully, I have comfy pants and running shoes on. Unfortunately, I can't have anything to eat or drink at this point and could have used some water by the time I get to the hospital. This comes into play later in the morning, but I am grateful that I drank 4 tall glasses of water before leaving for the morning.

8:00 am Nuclear Med Injection
The nuclear tech remember's me from Monday, already has the IV stuff set up to be left arm only and it takes her only one try to place the IV! Winning!! She injects me with radioactive Technetium 99-MDP (which is a bisphosphonate and why it is used in bones) and says see you in 3 hours. Good start.

8:50 am and the countdown to drinking barium 
I check in with the CT unit coordinator. Yesterday, my CT orders needed to be changed because with the recent transition to the electronic medical record at the hospital  it was listed as I didn't need contrast. I told them I was happy to not drink barium, but my oncologist insisted. However, from my description of the mochaccino flavored barium I have ruined the flavor for the research associate who manages my study case. I confirm with the unit coordinator that I am registered for with contrast and she confirms. She asks if I had lab work in the past 90 days, I tell her Feb. 2nd I had a complete panel done and my renal function is great (Thanks frequent oncology follow up!). Everything seems all set.

I go sit in the waiting room. They check if I'm wearing any metal. Nope. Ok you don't  have to get changed. I show them the IV already in my arm. Great, we'll start bringing you drinks soon. Can't wait.

Or can I.

One of the RN's from CT comes into the waiting room to get me and asks me to "Step over here" for one second. Well, that's never good. She informs me that because I never had and HcG (pregnancy) test they can't do the test. I inform her that the test will be done today and who do I need to give my urine too. She directs me to the upstairs lab and I let her know that they way her department has handled my testing is bullcrap (using a less polite word) and inform her that if I had known about the test I would have done it.

Now I run up to the blood lab. I haven't had anything to drink in 3 hours at this point time. This is when I am thankful for all the water I drank in the morning. I explain the situation to the guy at the desk and give him my medical record number of the top of my head. I get the very familiar cup and they send it to the lab stat.

 9:40 am Mochaccino time!

By the time I make it downstairs they are able to confirm that it is negative and the RN hands me a Mochaccino flavored barium drink # 1.
I apologized for being rude to her. She states that she did not find me rude and was unhappy about the patient care I was given (Only in Massachusetts would telling someone that a process was bullcrap is not rude. Perhaps that should be our new state slogan?). I was hoping this would make her only want to give me one Barium smoothie, but no such luck.

The waiting room for this year's CT scan had two other woman cancer survivors. One just had some peach fuzz and her and commiserated on all the good drugs and how it has changed our body temperatures. I had asked her if it was warm in the waiting room because I wanted to make sure I wasn't adding a hot flash to my day. We also discussed the barium process. The first one goes down so easy. She noted that was one benefit from not being able to eat before. The second one, oh the second one,  not so much. I held up my bottle next to belly and asked her if I could move the rest in via osmosis and without drinking it. The other woman cancer survivor getting her scans, chuckled greatly at this, and let us know she was happy today was a without contrast day for her.

10:15 am time to suck it up

Both woman give me the "nod" and move on to their scans and I'm left with Mochaccino Barium #2 alone on the waiting room. I have 25 minutes to complete it. I get down a third of it over the next five minutes.

I start channeling my inner Ross Geller. "Vanilla milkshake, just a vanilla milkshake"

and get down another third of the shake.

10:30 am this is not great

Ten more minutes. I attempt to get more down. I take a great big sip through the straw and at that point I am really grateful that there is no one else in the room. My entire body tries to bring the barium back up. I'm able to put my head in my hands on my knees and keep it down. My mouth is watering and I'm getting a little shaky. I keep it down and victory! I have drank 900 ml of mochaccino barium. The taste in my mouth is just foul.

10:40 am The CT scan finally!

They come and get me to do the scan. The first couple are done without the IV contrast and then comes the contrast. That familiar burning sensation where you think you may have just peed your pants (but don't). then a couple more quick scans. Then the radiology tech did on of the best things ever. She took the IV out of my arm. I told her I loved her. She told me she get's that all the time (I'm pretty sure I have made the same declaration after every CT scan). Then we both noticed that my arm was bleeding. She cleaned me up and left a bandage in place.

11:00 am Bone Scan Time

After drinking 1 cup of water and with Mochaccino flavor still prominent I head to bone scan. The radiology tech who is no more than 22 years old greets me and begins to explain the test. I smile at her and she asks if I've ever had one before. I tell her I've had 7 (only 3 were cancer related, the rest, as a runner, were for stress fractures).

The first scan is the long one 20 minutes. But it's the most exciting one to watch, once your head clears the gamma camera (say that 5 times fast). You get to see the camera pick up the radioactive isotope in your bones and put together your skeleton. I have to say my scoliosis does not appear as pronounced as it once was. I also note, that my old stress fractures don't light up. That is the extent of what I can interpret.  It also took me longer than I would like to admit to realize it was not hip bones but my kidneys that were lit up so bright. In fairness I didn't have my glasses on and could only view it out of one eye. I swear I passed Anatomy and Physiology, I swear.

The next scans are short, 3 min a piece and check my skull and ribs closely. The tech checks in with the radiologist, they are happy with all the pictures and send me on my way.

12:00 pm 

My mom picks me up at the hospital, and I start drinking water. We get home and English Cheddar and Lemon soda are my food and beverage of choice. I am fairly certain I won't be hungry for days.  The lemon soda is very helpful in finally eliminating the mochaccino flavor (not so much for eliminating the burbs).

No news is good news and my appointment with my oncologist on Monday will confirm my NED status.

For now, I'm going to go eat one of those cupcakes I made on Monday. I think I earned one.

(Also, this was the last song that I heard on the radio while heading into the hospital. There is no way things can be bad when Britney is the last thing you hear)


Monday, April 20, 2015

Every Three to Four Days

Every three to four days I have some sort of test until the grand finale of a mammogram on April 30th.
Today was my MUGA scan to make sure that I'm still having good heart function and that the vaccine is not damaging it. 

I started my Monday with the nuclear tech blowing out one of my remaining good veins in my wrist. He apologized profusely. He has been one of the few people who have ever been able to place an IV in me, so I told him really not to worry about. He placed a new IV in my elbow in under 5 seconds.

Once the IV was in Nuclear Med was able to give me the PYP prep again. Last time there was a national shortage and there was heprin and blood testing involved which extended my appointment. Today, it was just a quick injection and then 30 minutes in the waiting room and picture time. Now, sleep has been ok, but not great for me the past week. So when you are given a warm blanket and a pillow, it doesn't matter that you have leads on to measure your heart rate and a giant machine a mere centimeter from your face you take a couple of cat naps. During the three separate pictures I took naps in between the tech coming in to rotate the machine. That and me singing song lyrics with the word heartbeat in it, shocking, I know. I had this Whitney Houston song in my head and noted that when I rocked out in my head my heart rate was in the 70s.  

When I went back to napping then my heart rate was high 50's low 60's. In my unprofessional opinion the waves looked good.

I'll tell you what isn't going to help my heart. Baking. Unfortunately, baking is my stress release. Today after the scan, a full day of work, a broken down bus and a walk home in cold rain I put my pjs on and baked some more cupcakes.

Thursday is my bone scan and CT scan. I'm having a tougher time with the lead up this year than years past. I hope it is not a precedent for the future. I apologize if my posts are a little distracted, but it's not hard......oh shiney do these days.

Saturday, April 18, 2015

One down, five to go

Being a dietitian, I love food. I love to eat food and I eat food often (like every couple of hours). My prep for my EGD on Friday meant that I couldn't eat any food after 8:30 pm on Thursday and I couldn't have anything but water or soda the next morning and then nothing after 11 am. This made for an interesting work day. Thankfully, most of my patients were not interested in discussing food. I wouldn't say I had the most energy ever and was fairly easily distracted, but I understood why I wasn't able to eat.

My stomach had been burning since I had my physical (9 days) so I was hoping the EGD would give us some insight.

The gastroenterologist was running late, so by the time I was taken back into the endoscopy prep area it was past my initial scope time. Both nurses I had were about my age. The first nurse is telling me about getting an IV and blood pressures and I immediately say to her "Left arm only."

She pauses and looks at me. "What's in your right arm?"
"I've had my lymph nodes out from breast cancer."

Cut to nurse trying to hide the surprise on her face. She continues to check me in and asks me what the ta...mox..if---n is for. I explain it's the medicine I take for breast cancer. Ok. She explains to the nurse who is placing my IV that I am left arm only. He recognizes me and asks if I work in the hospital. I tell him yes and that I cover the floor directly across from the endoscopy suite. He gets the IV in two tries. I assure him that that is really good for me and it usually takes more. Today, I have no bruising at all in the two sites. This man is a rock star.

Then I get a new nurse, who is wearing a Dustin Pedroia t-shirt. She is instantly one of my new favorite people. She takes a look at my history. "What? Your so young for breast cancer. Have you seen the new Massachusetts license plates? My mom is breast cancer survivor and she is the one who got them made"

We then chatted about that process, which involved signatures, legislative declarations and a lot of legwork.

Then came test time.  The physician was asking me why I was there asked me if I drank a lot of coffee or tea with caffeine. I explained to him I drank no caffeine, no alcohol. That got a little bit of a surprised face. They then rolled me into the endoscopy room. They gave me a little fentanyl and versed and I work up in the recovery room.  

But, as my test got further delayed and it ended up being nearly 21 hours since I ate, I was not the most rational person when I cam out of the test. The nurse gave me the great news. Normal esophagus, stomach and duodenum. Did they take any biopsies? No. So here is where I loose all rationality.  I repeat back to her "Nothing, they found absolutely nothing?" RN:"You seem disapointed" "Well, I'm not pleased that the constant burning in my stomach is all in my head and you proved I'm a crazy person (Yes, because a cancer survivor being disappointed about her negative test results doesn't already lend itself to that)" RN "It's not saying that. Do you want a water" She then proceeds to hand me the worlds smallest water bottle that I drink at once. Put my Dustin Pedroia t-shirt on and meet Mom in the waiting room.

My Mom knew that I wasn't enthused that the test offered no insight, but she did continue to highlight the positive. She was also chalking it up to me be Crank-asauraus Rex because of lack of food and some sedation medication. After three bites of pizza (hey if my EGD is clear, I'm eating pizza) some glucose made it to my brain and a giant smile broke out on my face. "Hey, hey Mom. How great is that that the test was negative? I am having some burning and fat intolerance but it's not damaging anything." She just looked at me and shook her head.

Looking forward to keeping the streak alive in the next couple of weeks. One test down, one more all clear issued. Next up, a MUGA (heart) scan on Marathon Monday.

Also, I ate a cup cake to celebrate. Will work for food.

Tuesday, April 14, 2015

Captain Crazy Banana Pants

My Mother called me yesterday and this is how I answered the phone:

"Captain Crazy Banana Pants Reporting for Duty"

Sometimes waiting to have all your testing is hard. I honestly do much better once it starts, but the anticipation of it can be a little daunting. I am not looking forward to drinking mochaccino flavored barium. This is the time of year where I schedule the heck out of myself and spend as much time with friends and family as possible in order to distract myself.

My schedule has looked something like this: Thursday dinner with friends, Friday asleep at 7:55 pm, Saturday day in Rhode Island with a friend and her toddler, Sunday brunch with friends and their kids, bridesmaid dress shopping for a friend's wedding in the afternoon and dinner with friends in the evening. Sunday was especially ridiculous as the only time by myself was spent riding the train/bus between events.

The past two days after work I have run part of the way home (3.5 miles) with my running back pack that I bought in December and have been waiting for clear sidewalks to use. Yesterday, even the run wasn't enough to quell the underlying anxiety, so I painted part of my deck to look like the green monster and raked my yard. Today, after my run I went to the grocery store because I was out of vanilla and it is impossible to bake without vanilla. Then I made cupcakes. I'm tired, but I think I can be like John Mellencamp and drop my middle name (Banana) and just be Captain Crazy Pants for the next couple of days.By the time I'm ready for my EGD the sedation might cause me to insist on being called The Captain. But, at least I'll have a great story!

I also am buying myself a new comfy outfit to do all my testing in. This way I can spend tomorrow evening shopping for it. Yay distraction techniques.

One thing that really is helping is the gratitude journal. It does help me to focus on all the happy, positive, fun things going on in my life. And when I jam pack my schedule it gives me lots of things and people to be grateful for.

I can't wait to write in my journal: Today, I am grateful for clean scans and negative test results.

Now, who wants a cupcake?

Wednesday, April 8, 2015

What's one more Test?

Today kicked off my month of doctor's appointments and scans. When my schedule was sent to me from the hospital for April it went onto two sheets of paper. Yes, one 8x11 was not enough to contain my April.

First things first, lets start with a yearly physical. My yearly physical has always been late March/early April so it just happens to carry over into my crazy month of tests and scans. It's always nice to start with the easiest one.

My PCP was happy to see that my weight was back down the 8 lbs I had put on last year. Which meant we didn't have to have the discussion she had started last year about weight gain and tamoxifen. She was happy to hear that even though I couldn't sprint anymore (kodos to her for remembering I was a sprinter!) that I am still running. The hospital just transitioned to electronic medical records so we were taking a look at the way my past medical history was ordered.

-GERD (heartburn)
-Fancy medical term for rash
-Vitamin D Deficiency
-Malignant neoplasm to sentinel node
-and then free texted in was something about Breast Cancer

My PCP was not having that. She reorder it. R Breast Cancer s/p lumpectomy, chemo and XRT. Currently on tamoxifen. Great. We worked our way through the list and then we got to GERD. She asked me how I felt about coming off my heartburn medication. I told her I would like to stay on it. I told her I was still having some flare ups. And this little conversation made me realize that I may or may not be in a little bit of denial about how my gut is working.

PCP: How often are you having a flare up?
Me: Well in February it was probably 7 times, then same for March and then last week I only ate a bowl of cereal and cup of soup all day.
PCP: So....that's not ok.

We chatted some more and she decided that given that I am a young cancer survivor she would rather be overly cautious and send me for an EGD  to take a look at my esophagus, stomach and duodenum. Not totally psyched about adding yet another test to my month, but seeing as my stomach has hurt more often then not lately it's probably worth taking a look. That and I should probably stop eating all the leftover Easter cake........and no more chocolate bunnies........and maybe eat like a dietitian.....maybe

However, I loved that she had the same response that myself and my parents had. Let's just blame this on the chemo. I am standing by that. 1 year and 5 months after finishing chemo I claim that yes, my heartburn flares have more to do with chemo than chocolate bunnies. That's some good strong denial. 

So for the month of April I just have to have an EGD, a MUGA scan, a CT scan, a bone scan, a mamogram, and EKG and some vaccine shots. Then I'm taking a vacation. And maybe eating more chocolate bunnies. Seriously.