Tuesday, April 29, 2014

Mammogram: The New Contact Sport

Upon the insistence of the Research Study I got squished today. Off schedule and it caused a LOT of confusion. The folks in the breast imaging center were very concerned this morning and called the research assistant 3 times before I got a hold of them and explained why and what was going on. Then the radiology tech when she brought me into the squish room was trying to call people to find out what was going on. I explained to her that the Research Study Powers that Be were requiring it. She made two phone calls to let folks know that I was indeed there to have a bilateral mammogram on purpose. I greatly appreciated their thoroughness.

The waiting room for mammograms is also where I waited to have my initial biopsy done. My mammogram was a Tuesday at 1:45 pm. I know that Tuesdays at 1 and 2 are when they do they biopsies. I offered a kind smile to both women who were having their biopsies. One woman had undergone many of these before and she spent time assuring her friend (her support that she brought) that it would be ok. I guess her friend doesn't know about comfort in, dump out. The other woman looked scared. I hope my smiling and giving her "the nod" that this episode of divorce court playing on tv was hilarious helped. The mammogram waiting room is also a place that everyone does look my way, because I am about 20 years younger at least than most folks there. I was also the most relaxed person in the waiting room because thanks to mochaccino flavored barium I knew this was going to be negative. Painful, but negative.

Today I got to have the new 3D mammogram. I was excited. In my head I envisioned the 3D mammogram as something that wouldn't squish. You know some sort of scanner that they would just scan across and be done. So very wrong. The radiology tech lets me know that because they can get better pictures with the 3D mammogram that they really squish you to get the best pictures. She goes on to tell me that because I have metal clips in both breasts and that they are all close to the chest wall that this is going to be tough. Next up is 20 minutes of attempting to become one with the machine.

20 minutes of vice grips. 20 minutes of feeling like the machine was trying to pop my boob like a zit. 20 minutes of weird arm angles, sticking my butt out, moving my chin over here, pulling my shoulder back there. My favorite part is always when they have you in that weird position then lower the squisher pieces to lock your boob up tight is they tell you not to breath. No problem. The radiology tech really worked hard to get the best pictures often climbing under the machine to reposition me. She may have apologized a lot. But, sore ribs, back and boobs totally worth it for the report:

 "Clean! Follow up in 1 year!" 

Still have Salt and Peppa as my theme song for mammograms. May have sang "Squish it" during it. 

Wednesday, April 23, 2014

One Year Shot

Last week's follow up with my oncologist also included a milestone, one year enrollment in the PRESENT study. It also meant time for more shots. Now as the proud owner of one side effect in the study and an updated consent form coming my way, there was another change to my study treatment.

As I have previously documented my response to the shots seemed to continually increase with every sequential shot. The last time (minus the fainting) I also had to take benedryl. Well, the amount benedryl I previously took to control the swelling was considered a Toxic Level 2 response. "Huh?" Was my response as the oncologist was explaining this to me. The research RN (whom is very diligent) spoke with the study organizers about this and it was deemed that I needed a dose reduction.

I had just been told my scans were clean and I had started to relax. Then she said "dose reduction". I started to protest. "But, I never had induration greater than 10 cm!". My oncologist explained that the reduction of dose would be in the immune booster portion that they inject, because that was more likely what was causing all the inflammation. She let me know that the peptide (if present, unknown in a double blinded study) would not be reduced. Phew.

3 out of the 4 shots hurt. The first 3 were like 30 second bee stings. The fourth one didn't hurt at all. I still made the research RN nervous and sat on my hands to make her feel better. Also during the injections I found that I feel better if I hold my breath and attempt to to pull my diaphragm into my rib cage. It's weird, but it totally works for me. 

24 hours later, I was not sure that a dose reduction had helped or that it might not be the peptide causing the reaction. My leg was swollen. So swollen you could see it through my slacks and it looked like I had a quidriceps instead of a quadriceps. The induration (thickening of the skin) wasn't bad though.

48 hours later, I was pretty sure the research RN and oncologist were genius'. The swelling went way down and my quid was a quad again. And my thigh was now only partially red and translucent white (it's baseline).

72 hours later and just a small amount of induration at each of the shot sites. And I was able to go for a run. Happy day.

Maybe it was because I saw We Will Rock You the night before, but this was the song in my head for my run. Except I only know the words to the chorus. But you still got to love Queen.

Sunday, April 20, 2014

A Happy Little Thing Called "Thank You"

I have written before about how being a cancer survivor fills you with gratitude. A Boston College Student Josh Coyne decided to do an experiment to show that expressing gratitude leads to decreased stress, increased self love and happiness. His results were statistically significant. I have found that I more freely express my gratitude and keep a pile of thank you cards on the ready. I went through over 5 packages of thank you cards during my 7 months of treatment and the months following. I am thankful that others can learn how demonstrating your thankfulness makes you a happier person.

Oh and in case I haven't told you, I am grateful for you. Thank you for your continued support.

Wednesday, April 16, 2014

Officially Still Cancer Free

All tests were normal! 12 tubes of blood, urine, 2 CT Scans (mochaccino!), 1 bone scan, 1 MUGA scan and 2 physical exams. All normal (and heart function is back up to A+ levels).

My favorite line form the reports:

Zero evidence of metastatic disease. 

Lines like that me do things like this:

Celebration cookies!

More on this later. But for now, I'm just going to keep singing.

Monday, April 14, 2014

From bleach burns to barium burps

Knowing that today was scan day meant I needed some hardcore distraction this weekend. It meant that instead of crazy pants I had on a crazy jumpsuit.  The chosen project for the weekend: staining the deck. Saturday was spent cleaning the deck first. I do have a bachelors in chemical engineering. Lets keep this in mind. First bucket of water, bleach and dawn dish detergent I did not notice that I had filled it with scalding hot water. Drop my sponge and hand into it a little too deep and my glove fills with hot water and bleach. Genius that I am struggle to get the glove off and then shake the glove dry and wait 4 hours until the skin starts peeling off my hand to run it under the tap. My right hand is now slightly maimed. Oops. But, did you know that they make tubular guaze for fingers for people who do genius things?

Sunday came the tantrum. I had nicely cleaned the entire deck with a burned hand and all and went to bed knowing that I was going to get up and paint the deck. I had my schedule and when I get a little cray cray I NEED a schedule. Well, 20% chance of rain and I woke up to a downpour. Well lets just say Wolf of Wall Street and there 154 f-bombs had nothing on me. Talk to any member of my family who tried to talk to me. I swore at the rain for a good 2 hours before I just said screw it and did my grocery shopping, raked the yard, dug out a space for my garden, and attempted to put the raised bed together. The last item unleashed another litany of expletives and perhaps a foot stomp or two. It was as pretty as it sounds. But, the deck did dry out and I was able to paint it. In the dark. Under the lights (where I may or may not have needed to wave my arm to get one of the sensor lights to stay on). But, I felt better my weekend mission was complete.

I had today off from work, but I spent the whole day at the hospital. Taking a vacation day for scans, never the way anyone wants to spend their time. My day started with a bus running late and a fight between two women on the bus. The shouting and expletives were flying and it got pretty heated and the bus driver pulled the bus over to tell the two to knock it off. It was amazing. So yes, a nice relaxing ride to the hospital. Knowing that I couldn't have anything to eat or drink after 10 am I had doubled up on the water before I left the house. Then the bus was 20 minutes late. I ran into my radiation oncology appointment told them my name and ran to the bathroom. Then finished my check in process. The clerk at the front desk found it humorous, thankfully. Quick check up with the radiation oncologist, who is happy to see how well I am doing. She was concerned about the rash I am being treated for until she looked at it and agreed with my PCP, likely from hormonal swings. Her most important question every time I see her, when and where is your next vacation. (AZ in May!)

After killing some time in my office and drinking the last bit of water before 10 am I headed to get radioactive. This may be the one Nuclear Med Tech I haven't worked with before. I was a little keyed up for the rest of the day when she brought me in the room. She was headed into her usual spiel and I turned into a question machine. What was this isotope? If it is the same technetium as the MUGA scan is that why I can't have those two scans on the same day? And because it's a bone scan that's why I don't have the PYP to make the technetium stick blood cells right? She was trying to answer these questions as I babbled about being a hard stick and how I was going to have mochaccino flavored barium for lunch. She was trying to get back onto all the items she had to tell me and downgraded the needle gauge size to make sure she had a success on one try for placing the IV. She sure did, despite all the questions and extraneous information I threw her way. She also hunted me down at CT scan after she realized that she forgot to tell me that I could eat before the test. Very appreciative.

The CT scan was not my favorite and will never be. The people in the waiting room did not help. First, this was my lunch today:
Two of them. The first one went down fast. The second one went down slow with some gagging involved. While choking down the second shake the small waiting room I was in filled up with people. One older woman was complaining about the blower, looks at me and says "Well this guy isn't cold, he doesn't seem to mind". I looked at her and state "I am a SHE". Now, instead of being apologetic the woman says "Oh, you're a she. Well with the short hair ". Well, I think this lady deserves another F bomb. Even if it was only in head. Here is the kicker, she has short hair too. She was not even having testing done. She was just there to be a giant jerk.

Thankfully it was time for my scan. The tech asked me how my day was going. I told her other than the lady in the waiting room calling me a dude, it was good. "What? " Yes, the lady just called me a man. Ok, no metal on right? I didn't know how to respond either. She did have me drink the last of the barium shake. They make you save 25% of the shake to chug right before scanning (I just burped with typing that). It is warm and gross. I really will never eat anything mochaccino flavored again. Blech. After chugged barium and some scanning came the dye and feeling like you peed yourself. I mean who doesn't want to take a vacation day for this stuff? Peeing yourself, drinking barium, being called a man. Fun, fun. All worth it for the next year's worth of piece of mind when it comes back clear.

Things got better from there. The tech took the IV out of my arm. I may have told her I loved her when she said she was going to remove it. Then I was able to start drinking water to flush the barium, which was making me a little queasy, out of my system. I got a cup of soup to see if real food would help. It did not. But, having only the bone scan left on the day improved my mood.

The bone scan starts with your legs and arms being strapped to the moving gurney. They then lower a camera until it is millimeters from your face, but not touching. All I could think of was what anyone with a sibling thinks of "I'm not touching you"

The best option is to keep your eyes closed until your head is out from under the camera. But, if you do open your eyes as you are slowly able to see around the camera, it is best to sing this in you head:

And also try not to crack yourself up and move. After the full body scan came the rib cage photos. Now after a weekend of scrubbing and painting putting my arms over my head is a little tough and thankfully it's only for 3 minutes per side! Lastly came my head. It has been 12 years since I have seen the bone scan in progress. The picture of the bone scan slowly fills in with bright dots. I was able to watch my skull and vertebrae and then my teeth all fill in the picture . It was cool and I forgot that it is totally Mike TV in Willy Wonka to make the pictures. I kept looking for the pieces of me in the air.

Started with a 9 am appointment and last scan was done at 3:45 pm. Thankfully my mother came to pick me up so I didn't have to take the bus. She took one look at me and was concerned that the barium was coming back up. I could only tell her that I was 50% sure it would not. Thankfully, it stayed down along with 3 liters of water and half a sandwich. Hopefully, by the morning all will settle out. But, please no mochaccino anything. Ever.

Tuesday, April 8, 2014

Follow up

Got an email from the oncologist:
"MUGA looks great! Normal heart" stop being such a crazy person. Ok it didn't include the last part. What it did include is the study folks are demanding that I have a mammogram done this month. So apparently a CT scan, bone scan, multiple rounds of blood work and physical assessments and a MUGA scan are not enough. My oncologist fought them on this as she feels they are over exposing me to radiation. They still insisted.

So one more test this month in the name of science and a cancer free slate. 

Monday, April 7, 2014

Of MUGA scans and Crazy Pants

Folks, I have put my crazy pants on. I did it two legs at a time. It is not pretty.

Today was cholesterol testing which involves fasting. You all should feel bad for my mother right now. She gets texts like this while I ride the bus:

What the above picture does not show you is that I then sent her 4 more rapid fire text asking her questions before she could respond. She loves when I do that. Especially at 6:30 am. 

So while fasting and clearly a little grumpy about it I waited in line for the blood lab. Knowing that I am a hard stick, as I can only ever have blood drawn from my left arm, adds to my morning crankiness. However, I was instantly disarmed when by luck of the draw, a breast cancer survivor is slotted to draw my blood. She takes one look at my left arm and retrieves the best stick in the unit. She made sure I was only stuck once. Thank you! Four tubes of blood at 15 minutes later I am happily united with my oatmeal.

With food in the belly I went to work on the day until it was time for my MUGA (heart) scan. As my ejection fractions have been slightly trending down since I started the vaccine trial I have started to become a little unnerved by this benign test. I lucked out again as the best stick in Nuclear medicine was the guy putting my IV in (one shot) and gave me the PYP prep to make my cells sticky for the technetium. After sitting in the waiting room for 45 minutes {side note doing work with an IV in your hand makes typing on a computer slightly more difficult} it was time to lay down and be scanned. I got hooked up to some leeds to have the electrical system of my heart monitored.

Here's where my brain became an enemy of my heart.

The first scan I am able to watch my heart waves and my heart rate. While watching the heart waves I notice that there are a couple of blips. But, I know nothing about PQRST things beyond that I know the parts of the wave are named based on the letters. And because I know nothing, my first thought is this can't be good. When the tech comes back into the room, my heart rate is at 60 bpm.  He asks me "Do you have a prosthetic in?" Me, now at 120 bmp "Why does my scan look wierd? And holy crap are those numbers accurate". The tech assured me that he just forgot to ask me if I had a prosthetic boob and it was something he is supposed to ask every person with a history of breast cancer. And that my elevated heart rate was from me now moving around. He did not say panicking. But I'll say it. It's because I totally panicked. Which is exactly what you want to do during a heart test. You want to obsess over every beat and blip especially when you have 20 more minutes of scanning where you have to keep still. Thankfully, I got a grip 1.5 seconds later looked at the monitor, took a deep breath and my heart rate slowed back to my normal 60 bpm. The tech asked me if I was feeling ok and asked if I wanted a blanket. I told him cold was my friend and that I was currently HOT. I assured him that it was an internal issue not one that would be fixed by lowering the external temperature.

The remaining 2 scans (10 minutes a piece) don't allow me to watch my heart waves or see my heart rate. To relax I try to figure out how many seconds I'll be scanned. This leads me to singing "Season's of Love" from Rent in my head , you know 525,600 minute. This leads to a random sampling from Rent on shuffle in my head. The remaining time passes quickly without any further panicking. It does however confirm that I have put on my crazy pants. The radiologist reads it and sends a report to my oncologist. We'll discuss it a week from Wednesday.

My mother asked me not to obsess about the test. This blog post totally demonstrates that I am not doing that. Totally.

Friday, April 4, 2014

A Month of Appointments

My glorious string of months (yay months!) of no appointments has led us to April. I have so many scheduled appointments, injections, blood draws and scans that the hospital has to send me two sheets of paper to list them all. #cancersurvivorproblems

Today started the next 12 days of tests/blood draws with my general physical. And I found more things that I can blame on tamoxifen! The rash I've had since December, likely from hormonal changes. Hmmm an estrogen suppressor causing hormonal changes? I'll take it as a sign that it's working. I'll also take the antibiotics to try and eliminate it. Also, because of the tamoxifen I have to have my cholesterol and triglycerides checked to see whats going on there. I'll try not to binge eat cheese before the blood test on Monday.

 Speaking of not binge eating cheese, my weight is up a little bit. Less than 5 lbs difference from last year, so my PCP was chalked it up to normal weight fluctuations.She told me she has seen people gain a fair amount of weight with the tamoxifen. She did encourage me to keep running and working out. When she asked me about my exercise routine she decided to just give me a star instead of write out what I do. It's been a while since I've got a gold star. Well, it's only been a year. One of my friends gave me a gold star on a card for finishing cancer treatment. Thanks friend!

Seeing as I fell off the no added sugar train two weeks after starting it, I may need to reconsider reinstating it during the week. Let's see what my triglycerides say. (Science side note. Refined sugar consumption has been linked to higher triglyceride). As well documented, I have had a great time eating baked goods over the past year. These numbers might be higher than the dietitian in me would like. The cookie monster in me is a little anxious to see the damage I have done over the past couple of years. And truth be told, I just ate two cookies out of the freezer. I never said I wasn't a work in progress.