Wig Day – 12/20

I know I’m doing some jumping back and forth on my story, but pretend it’s one of those annoying movies with lots of flashbacks. Today’s story happened the day before yesterday (12/20), and I would have posted it yesterday, but I needed a few pictures to go with it.

I have been feeling pretty decent in the mornings, and have worked from home half a day Weds, Thurs, and Friday. And then around noon I just seem to poop out. So I eat a little lunch, and nap a little, and see how it goes from there.

Thursday, at noon I was tired, but Kevin asked if I’d like to go get pizza at Westside Pizza (2 slices and a soda for only $5… for seniors). That sounded okay. After eating my 1 slice of pizza and giving the other slice to Kevin (because that’s how we roll), we went to a place here in Yakima that supports cancer patients, Wellness House. I had gotten their information from the NorthStar social worker.

Wellness House has support groups and such, but what I was interested in were their free wigs. They have, essentially, a wig lending library. I am told that my hair will fall out, so I figured it might be a good idea to have a wig for “dress-up” occasions. But I also was hoping I’d find one that was some fun color, like blue, or red… why be normal??? The young woman who greeted us as we entered referred us to Eunice, who would be the best at helping with wigs. Eunice, a long time volunteer there, took us to the wig room, which unfortunately, only had normal hair colors. Oh, sometimes they get colorful wigs, but mostly just standard colors. That was a disappointment. To me the standard colors looked so… grandmotherly (please grandmother friends of mine, do not be offended!). The first wig I tried on was too blonde. The next was too dark. The third was dark brown with a few gray hairs here and there…. probably as close to my own coloring as they had. And it was pretty short hair compared to most of the wigs. I didn’t want some crazy long thing. So I settled for it. After all, it’s free. Turns out that it’s a man’s wig!! Here’s another thing I learned about wigs on this day… they have names! The one I got is a “Steven” (even though it doesn’t look a bit like my brother-in-law). Here are some pictures:

Somewhat disappointed with that wig expedition, we decided to go to Yakima Beauty Supply here in town. The social worker at NorthStar had also given me a certificate for $100 toward a wig at this beauty supply shop. The young woman there, was kind, but definitely not the person in charge, and seemed a bit confused about what was available. First of all their supply on hand was low, they are expecting more wigs in a week or two. BUT they did have some colorful wigs! Okay, Seahawks colors… and, sorry my Seahawks friends, not really what I wanted. By now I was thinking dark blue, or red and black, COLOR! The girl showed me their catalog of styles and told me that the catalog is out of date, so I should look online. I sat in the store and scrolled through a wig website online on my phone. Kevin is so patient. I noted a few wig names, and colors, and she said she will look into possibly ordering one for me and call me. If I don’t hear from her I figure I can go back in a few weeks to see what’s new.

I ended the day with a boring, darkish brown, man’s wig (my new friend, Steven). And the hope for something more colorful to come. AND I was definitely all tuckered out.

Jumping Back to the Time Between Surgery and Chemo – Part 1

After the surgery the news was good – the margins around the tumor were clean and the sentinel nodes were clean. But the size of the mass (about 3.5cm) and the high grade of the cancer meant the surgeon was passing me on to oncology and that it was very likely that I would need to do chemotherapy.

There was an interlude of almost 3 weeks between that news (Oct 25) and when my appointment with oncology was actually made. Wise advice from someone who’s been through it… if you know a referral should have been sent, but you don’t hear from the receiving office, double check on both ends. Turns out the surgeon’s office had faxed the referral, but the fax hadn’t gone through and they hadn’t noticed.

I finally met my oncologist, Vicky Jones MD (I liked her immediately) – on Nov. 19 – one month out from my mastectomy. She was very thorough in explaining where her thought process was going with my cancer. She started from square one, and drew it all out on the exam table paper – which I took home with me.

Dr. Jones writes on the exam table paper as she starts from scratch and tells me everything. I got to take this home with me … it’s going in the scrapbook 😉

One thing was keeping her from flat out scheduling chemo… At the time of the core biopsy (back in early October) the cancer cells that were biopsied were triple negative = no hormone receptors. At the time of the mastectomy (10/19) there was cancer found outside of the ducts, but it was not tested for hormone receptors. Dr. Jones wanted to know if those cells were the same or different. IF the cells found outside of the ducts had hormone receptors then she might want to do a chemo/hormone therapy combo treatment. IF there were hormone receptors and they were very enthusiastically active, then there would be a slight chance of doing JUST hormone therapy alone. So she put in a stat order for pathology to be done on the cancer cells found outside of the ducts. She also mentioned that I might be a candidate for a particular clinical trial.

This was the week of Thanksgiving. The week after Thanksgiving I was scheduled to work in Seattle… do I stay or do I go. I went. No word from anyone on Monday. I made a pathetic call to Dr. Jones nurse, Joyce (who I also think is wonderful) on 11/27 requesting possible results. Finally on 11/28 I connected with Joyce, and made an appointment to meet with Dr. Jones on the 30th to “put it all together”. Back to Yakima.

11/30 – NOW, I thought, NOW I’ll get a chemo start date! Nope. Still not that straightforward. First I met with the social worker, Melissa, who talked about my FMLA paperwork. Then I met with Dr. Jones – yes, all triple negative. no – no hormone therapy for me (I was not surprised). She mapped out the chemo plan, and offered me the opportunity to participate in this clinical trial (Here’s a preview on the ubiquitous table paper…I’ll explain it later).

Again on the exam table paper, Dr. Jones mapped out the chemo plan. (Again saving for the scrapbook!)

It seemed like a pretty straightforward trial and I was ready to sign up right away if that was going to move things along… but no… the rules are that you have to take the paperwork home with you and really think about it. Can’t sign the papers on the same day you are presented with them. It’s the rule. But I met Beth, the clinical trials coordinator and she explained the trial and the paperwork in great length.

At the end of this appointment I had 6 vials of blood drawn, and had orders/referrals sent to VMM for a MUGA scan, and to Dr. Wooten to schedule a port placement. This was a Friday, Beth would call me Monday or Tuesday to schedule a time to sign the clinical trial paperwork.

I swear… after having things move SO fast at the beginning of my diagnosis, this was sheer agony waiting. It was hard to know when to be pushy and when to be patient. More in part 2…

12/18 – Watching and Waiting

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)

These are my 4 anti-nausea meds – one required, the other three are optional.

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.

First Day of Chemo 12/17

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.

Here’s the port with the butterfly thingy that clips on to it where lines come out . From these lines they were able to draw blood, and to drip in the meds.  My yellow skin is a healing bruise from the port placement surgery.

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.  

Candy Crush and Cheetos – distraction and keeping something on my stomach. This could be kind of boring…

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.

Surgery Day – Part 2

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:

My first meal after surgery – half an egg salad sandwich, cottage cheese and peaches, and orange sherbet (which I ate first)  … comfort food!

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). 

Surgery Day – Part 1

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.  

My rock, doing the crossword puzzle in my pre-op area room.

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.

I got to watch HGTV during the wait for the isotopes to get to target.

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

The Journey Begins – Part 5

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.