Today I am tired. So I’ve slept a lot. Drank a lot of water- to help flush the system. Peed a lot. Took my required steroid medicine, Dexsmetasone. Took a dose of the Lorazepam when I felt a slight twinge of unsettled stomach. Is it going to get worse or better or just go along like this for a while?… watching and waiting.
Meanwhile I’ve followed the suggestions for how to eat. I had oatmeal for breakfast, crackers and peanut butter for morning snack, half a turkey sandwich for lunch, half a grilled cheese sandwich and a satsuma orange for supper. Now, just after taking a Lorazepam and a Prochlorperazine I’m snacking on dry raisin bran (no poop yet today)
One other medicine that I received today was Neulasta- maybe you’ve seen it advertised on TV. It’s a white blood cell booster and we chemo people get an injection of it 24 hours after our chemo treatment. I left Northstar yesterday with a mini-pump attached to my arm. At 5pm today it beeped 10 times and then slowly injected the medicine into my arm.
My Neulasta On-Body Injector
Not an exciting day, but at least I haven’t been miserable.
The very first day of treatment (yesterday) We arrived at NorthStar (Yakima), I was weighed, temped, blood pressure taken. I talked to the nurse, Beth, and then Dr. Jones. She examined me. I told her about the bit of cold (scratchy throat, bit of post-nasal drip, no fever, no cough) that I had been experiencing for the last 5 days and she didn’t feel that that should delay my chemo start. I told her about my achiness around the port area, which she said is par for the course.
Beth took us to the infusion lounge and told me to go ahead and pick a chair – I know it’s nice to have choices, but at the same time I think I would have preferred a “why don’t you sit there”. I felt lost. I sat in a recliner and she brought me a warm blanket and a pillow. I am taking part in a clinical trial – and have been randomly chosen to be a part of the control group. This means that I’m not getting any extra meds, but that there are a few extra blood draws that will take place throughout the treatment. So the first order of business before starting to give me meds, was to draw a couple vials of blood through my port. Karin (RN) cleaned the skin surface all around the port, then sprayed a freezing spray to numb it up. Then she set the butterfly looking thing on top of the port, gave a slight push, and we were set.
Karen drew two vials of blood for Beth to take off to the lab, then she started my pre-treatment… saline, something anti-nausea, some kind of steroid, and an oral Benadryl. I thought I’d feel sleepy right away, but I was pretty alert, and a little bored, so read my eBook, and snacked on the peanut butter crackers that the volunteer brought around. The pre-treatment /blood draw took about an hour. Then the chemo meds arrived. This is when they get serious – two nurses confirmed my identity and the identity on the meds. The first med is Adriamycin. It comes in a big syringe and is red (which means that the next few instances of peeing will tend to be pink). Karin sat next to me and gradually pushed the red stuff into my tubing over a period of about 10 minutes. Then she flushed that with saline. Then she hung the Cytoxan and let that drip in to my lines over a period of about half an hour. By this time I was feeling a little drowsy, but stayed awake playing Candy Crush, and eating Cheetos.
Treatment ended around 3, and Kevin took me home. He had gone to Walgreens during my treatment time and picked up the prescribed meds – all anti-nausea. Then I napped until 6 or so – Kevin made me a grilled cheese sandwich for supper, and we sat and watched NCIS, and I took one of the anti-nausea meds because I was feeling just the edge of discomfort. Then I slept more.
So, at this point – I’m feeling tired, heavy, slow, and not so very nauseous. I think there are things I should be doing… and then I remind myself that the things I should be doing are letting my body dictate what I do. And right now that is rest, drink, snack, nap.
Orange sherbet… the second best thing about being in the hospital. Shortly after I got to my room on the 5th floor (I think?), Kevin helped me order a late lunch (or early supper?). Here’s a picture:
The rest of the afternoon and evening is pretty hazy for me. I dozed off and on. At one point Kevin noticed that I looked pretty pale. And when I looked at my hands they looked sort of pale and blue. The nurse came in just then and Kevin expressed his concern. Turns out I was blue, from the blue dye they had injected for the sentinel node location! She warned me that my pee would be blue for my first few trips to the bathroom. And sure enough, she was RIGHT!! My pee wasn’t just light blue, it was deep Microsoft Edge BLUE! I should have taken a picture. Three days later, when I finally pooped (because anesthesia and pain meds make you constipated) the POOP was blue TOO!
I did well, apparently, and was discharged midday the next day (10/20).
If you have surgery at Virginia Mason Memorial in Yakima, I highly recommend Irena in the pre-op area, she is the best I.V. starter I’ve ever had. But first I got to change into nothing but a gown and ugly no-slip beige socks. Then they piled me with warm blankets… one of the best things about being in the hospital is warm blankets. The other best thing is orange sherbet… but that was later. Then Irena did my I.V. Then Dr. Wooten stopped in and marked which breast she would be removing, with my approval. Then Briana from Nuclear Medicine came to start the sentinel node location.
DETAILS OF HOW SENTINEL NODES ARE LOCATED (warning: may be TMI for some of you) Briana carefully explained exactly what she was going to do… it sounded pretty uncomfortable, and it was. In order to send the radioactive isotopes into the lymph system, she was going to inject the isotopes into my breast… in each of four quadrants… within the areola… but first she would inject the injection sites with lidocaine to numb the 4 sites up… in each of four quadrants… within the areola… Get the picture? I was going to be injected 8 times in one of the more tender places on my body. I was very very glad when she finished with the 8 injections (serious toe-curling ouchiness here!). The next step was to wait for an hour. The wait was so that the isotopes had time to collect in the sentinel nodes.
After an hour I was walked down to nuke med where it took 10 minutes or so to scan me and determine that the isotopes had collected in the sentinel nodes. Later, after I had been given happy medicine and didn’t know or care, they also injected blue dye into the same four quadrants. To do the sentinel node biopsy the surgeon first uses a Geiger counter to locate the nodes, and then after cutting down into that area, can actually see the nodes because of the blue dye. This is just heresay… I was in lala land for the actual biopsy.
When I returned to the pre-op area from my trip to Nuke Med I was given Versed (I think) to “relax” me, and I don’t remember much after that!
Apparently the surgery went very well. At least, that’s what Dr. Wooten told Kevin. I seem to excel in sentinel nodes… normal people have 2-3, and I had 5. The sentinel node biopsy and the mastectomy were all one surgery. When I woke up in my hospital room I had lots of lovely pain meds on board, so felt okay. I was still pretty evenly distributed chest-wise, since the mastectomy dressings were equal to (if not greater than) the left-sided itty bitty titty. … to be continued
I got a call from the surgeon’s office a few days after the MRI. She wanted me to come in to discuss the findings of the MRI. THAT couldn’t be good news. In fact, when Kevin and I went to her office on the 17th, I was pretty sure the surgery was going to be changed from a lumpectomy to a mastectomy. The results of the MRI showed a large mass (correlating with the ultrasound’s 4cm diameter). To be fair, Dr. Wooten gave me 3 options… 1. further biopsy of the mass to see if it was all cancer (or something like that – I wasn’t listening very well. In fact listening to a doctor while you wait for her to say mastectomy is difficult to do). 2. Larger lumpectomy, with the possibility of having to do more surgery if the pathology report showed that not all the cancer was cut out – and with itty bitty titties it would probably be about half the breast that would be removed. 3. Right breast mastectomy – preceded by a sentinel node biopsy.
I had already talked to Kevin about the likelihood of a mastectomy being the best option, so I was ready to say yes to number three. It made the most sense… get that cancer out of there for good! It turned out that I could still have my surgery on the same day (10/19), but that it would be more extensive and require an overnight in the hospital. Pre-op labs and pre-op ekg happened the same afternoon as the appointment with Dr. Wooten. I was all set.
Again such a whirlwind! From finding out that I had breast cancer on 10/10, to having a R mastectomy on 10/19… it was fast. I only cried once that whole time, and that was when I initially told Kevin the diagnosis on the 10th. I think my lack of tears was partly out of the unreality of it all, and partly out of my medical curiosity distracting me from the full impact.
And now a not so brief explanation of a sentinel node biopsy – what it is and why do it: The sentinel nodes are the lymph nodes that lymph fluid from your breast first go through. there are usually 2 or 3 sentinel nodes for each breast. Doing a biopsy of the sentinel nodes usually gives a good idea if the cancer has spread, because the first place it tends to metastasize to is the lymph nodes. The sentinel nodes are identified by injecting radioactive isotopes into the breast tissue and then finding the hot spots (sentinel nodes) with a Geiger counter (more on this test in another post). IF we didn’t do a sentinel node biopsy before the mastectomy then there would be no way to identify sentinel nodes after the mastectomy because there wouldn’t be any breast to inject the isotopes into. So after the mastectomy if there was concern for metastases they wouldn’t know which nodes were the sentinel and they’d have to remove and biopsy all of them. In short: a sentinel node biopsy was a good idea.
I thought having a mammogram was uncomfortable… let me tell you, a breast MRI is whole ‘nother something! This may be TMI (too much information) for some of you. You are forewarned! At least I didn’t include pictures.
So first you change into the metal-less garb of the imaging center. Then they start an I.V. because they are going to be injecting contrast into your vein at some point during the study. Then you lie facedown on the narrow “bed” that has two holes for your two boobs. These are big holes, because lots of people have big boobs. I, on the other hand, was blessed with my Grandma Callahan’s boobs. One of my high school friends referred to them as mosquito bites. Tiny. The poor babes just looked down into the great abyss of boob-space and sighed. But the MRI tech didn’t flinch. The part of the “bed” where the boob holes are is higher than the rest of it, so with my back arched uncomfortably because of the boob hole wedge, lying on my stomach, mosquito bites aimed at the holes, arms straight up overhead (diver style), one hand holding the button to push if I got too claustrophobic, I was slid into a narrow tube for the MRI.
What music would you like to listen to? They asked. I said 80’s music… why not… I was expecting the kind of music I listened to as I drove across the country in 1985 – road music… Wham, ABBA, Bryan Adams… music with a driving beat to go along with the anticipated noise of the MRI machine. Instead I was treated to 80’s soft rock: Air Supply’s “All Out of Love” and Chicago’s “Hard to Say I’m Sorry” – sweet music (hard to hear over the noise of the machine) that just didn’t cut it. I’ll know to be more specific next time.
The test took probably about 20 minutes, I don’t remember now. It seemed like forever at the time. I was wearing headphones playing 80’s soft rock, (headphones which, by the way, did not do much to filter out the banging and clanging and whirring of the MRI machine), when the voice of the tech came over the headphones and said something… who knows what. It sounded like the adults talking in a Peanuts cartoon. I hoped it wasn’t important information. Then I got this metallic taste in my mouth – aha, she was probably saying she was injecting the contrast into my I.V. Also somewhere during the process of lying there the noise of the machine went from clanging and whirring to whooping like an alarm… THAT was a little disconcerting. I may have jumped a little. Apparently that didn’t mess anything up – even though at the beginning I had been admonished to try to lie very still.
Don’t get me wrong – the tech and the nurse who took care of me during the MRI were awesome. They explained what they were doing and how long it would take, and what to do if I was having trouble. The experience itself though was… unique.
9/21 -mammogram. 10/1 – follow up mammo and ultrasound. 10/8 – core biopsy. 10/10 – biopsy results. 10/11 – appointment with surgeon. 10/12 – call from surgeon that I would need an MRI. 10/15 – MRI
All the while life goes on. I drove to Ocean Shores on Friday, Oct 12, for a weekend of scrapbooking. This was just after getting off the phone with Dr. Wooten telling me that she wanted me to have an MRI before doing surgery. I drove via White Pass, and shortly after I stopped to take this picture of Mt Rainier, the hospital called to schedule my MRI.
I didn’t want to spend the weekend being all “woe is me” with my scrapbooking friends – so I didn’t mention my diagnosis, and just enjoyed the people and the ocean. I was still wrapping my own brain around it all.
At the end of the weekend I went to my parents’ home in Des Moines (WA) to see my sister and brother-in-law who were visiting from Texas, and to tell them all the news. I know you are reading this, Mom. In fact you are probably reading it out loud to Dad. It was so hard to tell you. I want to shield you from things that might make you sad or make you worry. But I knew you would need to know.
We (Kevin and I) met with the surgeon on a Thursday afternoon. I liked Dr. Wooten immediately. She was (is) straightforward and compassionate. She explained the findings of the core biopsy… there was cancer found within the mammary ducts of my right breast (ductal cell carcinoma) and there wasn’t a finding of cancer outside of the ducts. This is good news. The grade of the cancer was high (other words for this are very active, or aggressive). This is bad-ish news. The cancer cells don’t have hormone receptors – something called “triple negative”. This is not good or bad news, it just affects the treatment for the cancer (more on that later).
One other piece of the puzzle was that the size of the area of cancer or mass was in question. By mammography it didn’t seem so big, but the ultrasound reported it to be 4 cm in diameter – that’s the diameter of a ping pong ball (I looked it up). Dr. Wooten wondered if they meant 4 mm (smaller than a pea). SO, if the mass was small we could do a lumpectomy followed by radiation and possible chemo. But if the mass was truly 4 cm then we would consider mastectomy.
Either way – we scheduled surgery for a week later. With the possibility that things might change after Dr. Wooten’s weekly breast conference the next day. Yes, there is such a thing as breast conference – where a variety of people (surgeons, oncologists, radiologists, and probably a few others) get together and talk about my breast. Super.
After the breast conference Dr. Wooten called me and said the team suggested further imaging – an MRI – that would help them to define the mass and to identify if there was cancer outside of the ducts. The MRI was scheduled for Monday. See how this went? Diagnosis on Wednesday, met with surgeon on Thursday, breast conference on Friday, MRI on Monday, surgery coming up on Friday. Things were moving so fast! More in the next post…
August – knew it was time to schedule the yearly mammogram. Also thought I was feeling a little extra lumpy-bumpy-ness in my R breast.
September – had the yearly mammogram at Ohana (Yakima’s breast health center). Not quite normal (which has happened before) so scheduled for follow up imaging.
October – follow up imaging showed a suspicious mass, so had a core biopsy, which came back with the diagnosis: DCIS – ductal carcinoma in situ. The person who called me with the news was the Ohana nurse navigator, Betsy. She told me the diagnosis, and told me the next step is to meet with a surgeon and discuss surgery option. She gave me surgeon options; I chose Dr. Wooten; She called their office and called me back within 5 minutes with an appointment for the next day!
This is how it started… I was surrounded by kind professionals, from the initial mammographer, to the team who did my core biopsy, to my Nurse Navigator, Betsy. More in the next post…