My surgeon was off during my month of tests. I usually see him after my mammogram, but didn't because he was off. Yesterday at 4 pm I had my appointment. I hadn't run into my breast surgeon in the hospital in awhile, so of course the day of my appointment I am behind him at the cashier in the cafeteria. When he sees me come in he says "Oh, hello again, not to worry we will make this quick".
The medical assistant takes my blood pressure, temperature, oxygen stats and heart rate. She looks at me and states "Well, that is the definition of normal." I told her I try. I'm beginning to wonder if I am the youngest patient they have had all day by about 40 years.
The medical assistant gives me a johnny to have open in the front and she logs into my account. I tell her about the large error that was in the system with the transition to the electronic medical record "Brain Surgery-Partial Mastectomy" that the endoscopy folks fixed. She gets a good chuckle out of this and tells the surgeon while I get my johnny on.
He strides in and says "So it's my brain cancer patient". I laugh and say "No, it was breast cancer just that you did the partial mastectomy in my brain". He just shakes his head. "How could that have even been an option?"
We get down to my actual appointment. He asks me about any pain. I tell him that if I haven't run or been working out for >1 week than I get some pain and that shoveling in the winter didn't feel great, but other wise I have zero pain. He is very pleased by this. I know from discussions with some of the nurse's who are also survivors that I am very fortunate to not have any pain. I had a discussion with one the other day about how she had to battle with her health insurance to go see the special lymphadema physical therapist because she has had pain and swelling in her arm as a side effect. She said it took a month to get approved, but now she finally doesn't have pain daily. She is only 10 years older than I am. A year of daily pain. I am grateful that for her it is starting to resolve.
My surgeon does his physical exam. He is super impressed with my scar. "Well, look at how minimal this is. There is only the littlest indentation. Well, I think this is some of my best work." Obviously, he is clearly disappointed with his results 2.5 years later. He looks at me and says some of my most favorite words "I'll see you in a year." Yay!
Then on his way out the door. "Keep running.". I would agree with him that my level of physical activity has likely helped me from having significant pain. It's also a great motivator to keep myself moving. And, occupational hazard, but I think my excellent nutrition has likely helped my great healing from day one. Cookies and all.
Speaking of cookies as I already celebrated with a run and some weight lifting, I think I'll do a little baking. Or maybe a lot of baking. And some more running.
One of the news stories that really disturbed me this week was the $187 million fraud complaint against Cancer Fund of America, The Breast Cancer Society, Children's Cancer Fund of America, and Cancer Support Services. A group of four charities that were run by family members, which used a reported 3% of their funds raised to actually help cancer patients. As this Wall Street Journal details, one of the services the Cancer Fund did provide was shipping Little Debbie snacks and sample sized shampoo. Are you even kidding me? Yes, please send me and my bald head sample shampoo. Oh and please, while I'm trying to optimize my nutrition intake please send me literal crap in plastic wrap. Then these jerks went on elaborate vacations and bought themselves fancy cars. Yes, deceiving the public and not actually helping cancer patients must be really hard work that you need to reward yourself for. These people make me angry on an entirely different level.
If you looking for worthwhile places to make donations for breast cancer funding, read this great article by Time magazine. Which mentions two of my favorite organizations: Young Survival Coalition and the Dr. Susan Love Research Foundation. The YSC provided me with a free cancer navigator (giant binder) that helped me organize and navigate through my treatment. The DSLRF's primary focus is the cause of breast cancer in order to prevent it. Via their Army of Woman I have enrolled in more genetic studies and enrolled in the Health of Woman (HOW).
Or if you are looking into if a charity is worth your donation, don't forget to check on www.charitynavigator.org. They even rank them by cause.
When you have barely size "A" boobs and a quarter of one is missing, mammogram will forever be a contact sport. I had my mammogram first thing in the morning on my last day of work before vacation. As, I am now a mammogram seasoned professional I did not put deodorant on in the am was thankful for the cool temperatures. No deodorant = better pictures (and no need to use the hospital supplied Mammo-wipes to remove it. Because I am 12, I giggle everytime I see them).
I check in for my appointment, put my pink johnny on and sit in the waiting room filling out the forms about my breast cancer history. I take the liberty to draw in my scars on the diagram for the technician. I also see a couple of women in the waiting room who also work at the hospital with me. Their faces are horrified to see me in there. I feel like I need to turn my paper over and write "Just standard follow up". But they see me looking back and all just smile and then pretend like we do not see each other. I run into one of them up on one of the hospital floors later and she looks horrified again as I approach her, but when I start asking her questions about a patient and their plan or care I can see her relief. The majority of people in the hospital know that I am always happy to discuss all things breast health related, but I do know the time and the place.
After waiting only briefly the mammogram tech comes to get me. This time instead of a horrified look, her face lights up. She is the same mammogram tech who did my 6 month follow up mammogram when I was just starting to regrow hair. She remembers what department I work in and what side my cancer was on. I told her how impressed I was. She let me know that my age and great attitude left an impression on her.
She gets me all set up and lets me know how she'll be looking for the metal clips I have in each breast. We do our very fun coordination of press your face against this plastic shield here, stick your butt out over there, grab the handle and pull yourself in here, now let me squeeze the boob vice and don't breathe. The don't breathe part still cracks me up; pretty sure I couldn't breathe if I wanted too. The mammogram tech also remembers me because of my pain tolerance. While trying to view my surgical clips she really needs to jack up the the pressure. I read off the machine: 12 lbs of pressure. 12! She is happy with the view and takes the pictures quickly. My skin at this point is hot pink. All I can think of is that if men had to have 12 lbs of pressure applied to anywhere on their body the method of testing would have been changed 50 years ago. She does the pictures on both sides, with significantly more photos on the right side to really capture the clips near my chest wall.
After a brief return to the waiting room, she comes back to let me know the pictures look good and I am free to go. I thank her and go to get dress. I instantly regret picking a v-neck shirt for the day. I have large red welts on both boobs and reach out to my sternum. I consider walking around with my lab coat closed all day. It takes 4 hours for the marks to go away, but knowing she got good pictures was an excellent send off to vacation.
The state of Massachusetts passed a law in June 2014 An Act Relative to Breast Cancer Early Detection. The purpose of the law is to notify you if you have dense breast tissue, the degree of density, why that could pose a risk for breast cancer and where to find more information. Knowing that I indeed have dense breast tissue (as I should at age 33) I was intrigued to see my letter. Well, my letter came and let me know that I have "extremely dense" breast tissue and other screening methods may be beneficial. I chuckled knowing that this was a form letter and that a CT scan and multiple physical exams were my "other" screening methods. It listed some resources if I felt I needed more follow up. I understand the purpose, as it is important for folks to know about their density and perhaps can open a dialogue with someone's PCP if it is not already there. I think it's great to make people aware of their dense breasts and hope that does lead to additional screening where warranted, because early detection is better.
There are 22 states that have passed similar laws and did you know that there are breast density advocacy groups? Neither did I until I was doing some research to see how many other states have enacted such laws. They even have a free app on itunes for dense breast folks in order to provide them information. How cool is that? But, this also makes me wonder why do we need to have state laws? Shouldn't this just be standard practice of care. Get's me fired up. Same way that some health insurances don't cover the BRCA genetic test. Nope, standard of care. Good thing we have advocacy groups.
Happy to know that me and my legally declared extremely dense breasts can continue on being NED for another year. And another year until I can see how much pressure my boobs can take in the mammogram machine. I don't want to know what kind of training that would involve.
For the past two years every single time I went away for vacation I have come back and had tests or injections or blood draws to do. Every. Single. Time. After 2 weeks of testing every 3-4 days I went on vacation after. Thursday I had my mammogram (recap and insight about the new Massachusetts law to follow later) and was cleared good to go. Bruised and red and regretting wearing a v-neck, but good to go.
Let me tell you, not having any tests to think about when you go away makes for vacation x 10. It helped me savor the experience and be grateful for all of it.
I started my trip in Denver for my cousins bridal shower and my Aunt who was very excited about my being declared NED introduced me to people as a Breast Cancer Survivor. It was very fun. One of my extended family members who was there had recently been declared NED himself (Yay!). His hair had recently grown back in and had the familiar texture and curl of a fresh chemo perm. He was talking about how one side of his head has been slow to regrow. I told him for me the last portion activated was the top of my head, so I had male pattern baldness for an extra month after finishing chemo. He chuckled as this made him feel better.
Someone walked by and asked him "How are you doing? How are you feeling?"
He asked me how long it would be until people started the conversation with something/anything else. I told him that even 2 years later for some people it is still their first question, but for most it has moved to their second question. I told him the great part is that for me 6 months later I was able to not think about cancer all the time or first thing in the morning. There came a point where I realized I went two days without talking about it with multiple people. He stared at me incredulously. I laughed. I told him that I too had that reaction when a fellow survivor told me the same thing. He'll get there.
Next up on my vacation/celebration was a trip to visit my brother, sister in law and my 6 month old niece. If you ever want to feel grateful for another year of survivorship hang out with a 6 month old for the week. Watch her learn how to sit up, take her first swim in the pool, and teach her Itsy Bitsy Spider. And watch her LOVE apples. Too fun. But, spending time with her made me so grateful that their will be more milestones for her and me.
Tomorrow I go back to work. And guess what. I have zero tests, zero appointments this week. None. Hopefully, that will ease the transition back to the real world.
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.
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.
10:15am 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)
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 object...to do these days.
