ALND and LYMPHA surgeries next week

cw: descriptions and pictures of insides (lymph nodes)

The tumor board met today and decided that I will have a second surgery next week. The surgeon already let me know, earlier in the week, that a second surgery was likely, so yesterday I had both post-op and pre-op meetings in Seattle. The folks at the UW Medical Center were nice enough to fit me in at short notice yesterday morning. And we already had tentatively booked the OR time/space, so while I was meeting with the plastic surgeon's team at UW, I was getting pre-op calls from scheduling folks at UW.

my surgeon was complementary about this port-a-cath necklace by Alison

The SCCA folks were nice enough to move my afternoon appointment to a morning appointment after the UW folks got me in at 9am. Driving from Yakima that morning was about as much fun as you might expect and we nearly made it back in time to see Alison shave (another!) 15 seconds off her 1600 meter race time. (But, we didn't because, y'know, she was too fast for us!)

In her 1600, she's shaved almost a full minute off her time from the start of the season to yesterday!

The lumpectomy got clear margins on the tumor, so they're leaving my breast alone this time. The port-a-cath came out last week and my upper chest feels oddly flat without it there, but all three wounds from last week are healing just fine. Apparently the amount of numbness and pain I'm feeling (which are both totally manageable) are not unusual. In fact, yesterday was about as bad as I've felt in that arm since the day after the surgery, but I also lifted things I shouldn't have a few times, found myself leaning on the arm in the car, and they made me stop taking one of my pain killers as a pre-op procedure (Tylenol is allowed but not Ibuprofend and I'd been alternating them).

Javelin in middle school looks like lawn darts

Last week two of the three nodes from my sentinal node biopsy had "isolated tumor cells" in them, so next Wed, June 1, I will have an ALND (axial lymph node dissection) that will remove some more lymph nodes from the same armpit area. At the same time, I'll have a LYMPHA procedure which is done by a plastic surgeon and, for extra fun, isn't covered by insurance.

the header of the contract they make us sign before surgery agreeing to pay (out of pocket) ahead of time

Breast Cancer surgeons generally, and the ones at SCCA specficially, apparently disagree about whether an ALND is necessary in my case (meaning isolated tumor cells rather than micro or macrometastases, and after chemo rather than before). Apparently the study that will answer that question should be out in 3-4 years. As I can't wait that long, we had to make a decision without those results.

Over the weekend, my SCCA surgeon had spoken with several other surgeons and the majority thought the ALND was a good idea. Today at "tumor board" she got feedback from the radiation oncologist(s). The question was whether radiation (which I will have regardless) would take care of the rest of the tumor cells. Apparently the answer was either "no" or "not sure."

I can't even lift this little cutie

Yesterday my SCCA surgeon met with me and drew me a picture (literally) of the level 1, 2, and 3 nodes in that area. As she said, because all three levels (1= closer to the breast and 3 = under the muscle and harder to remove with surgery) had some cancer before chemo, and because 2 of 3 nodes removed last week had cancer cells, this caused some concern. If I understand correctly, the concern is about recurrence of cancer in those nodes, but not in the breast. The good news is that those isolated tumor cells in the nodes don't raise concerns for the surgeon that I might have tumor cells floating around the rest of my body. (This is the kind of thing I start to worry about once my focus starts to move away from the logistics of surgery and recovery.)

the location of level 1, 2, and 3 nodes (left to right)

In the ALND, my surgeon will open up the partly healed incision from the sentinel node biopsy and will cut away more lymph nodes. From what I read, this will be 10-40 nodes, but I forgot to ask the surgeon how many. She'll inject some dye into my arm (last time it was injected into my breast) that will identify relevant nodes and also will turn my skin and pee toilet bowl cleaner blue for a few days (assuming it's the same dye as last time). I'm not clear on how they determine which nodes to take, but I'm content to leave that to the experts.

The other pre-op yesterday was with a plastic surgeon. I feel like saying I'm getting plastic surgery should mean that I'll come out looking more beautiful, but in this case beauty is really on the inside, because the plastic surgeon will be rerouting some lymph drainage into my veins. It should cut my risk of lymphedema (swelling in the arms caused by lymph fluid drainage problems) about in half.

Because lymph nodes are clustered together like grapes (actually, I think they look like some kind of kelp or aquatic plant you find on the beach, but I don't know the name of that stuff), when the surgeon cuts them out, there will be relatively few lymph channels. So if she takes out clusters totalling 20-30 nodes, there might only be 3-7 lymph lines or tubes remaining in that area. There will also be some cut veins, because the lymph system runs alongside the circulatory system of blood vessels and the lymph fluid drains into the veins.

lymph nodes in clusters

After the ALND surgery, the plastic surgeon will come in and find those cut lymph lines (she compared them to spaghetti noodles). She'll gather up these noodles that are only as thick as a few hairs, and put a stitch in them. Then she'll find a cut vein and stitch the noodles into the opening of that vein and secure them.

This LYMPHA procedure basically just connects the spaghetti to the vein. Without the LYMPHA procedure, the spaghetti noodles would drain the lymph fluid into the arm instead of into the veins. The job of the lymph system is to collect any fluid (blood or the immune system's response to an injury like a bruise or infection) from the area and drain it into the lymph nodes and then into the veins. Lymphedema is what happens when those drains back up. Without the plastic surgery procedure, the drains are more likely to back up. The procedure seems pretty straight forward, really and seems like something you should obviously do if you are cutting up the lymph system.

lymph nodes and the breast illustration in my breast cancer book

The major disadvantage of the ALND procedure is the increased risk of lymphedema. The major disadvantage of the LYMPHA procedure, on the other hand, is that insurance doesn't cover it. (Insert complaint about the US Healthcare system and health insurance here.) The LYMPHA procedure may not prevent lymphedema, but as the plastic surgeon's resident (I think he was a resident, anyway, her helper doctor guy) explained, at least we tried everything we could to prevent it.

See, here again is where I get mad at statistics. The ALND without LYMPHA leaves me with a 20-30% risk of lymphedema. The ALND with LYMPHA cuts that to about 5-10%. But I will either get lymphedema or I won't. My personal experience is yes or no, got it or not, 0% or 100%. And just like how I "beat the odds" by getting breast cancer in the first place, despite my low risk, I will experience the procedures after the fact as helping or not based on what happens to me individually, rather than based on a statistical analysis of all the folks who have the procedure.

Statistical rant aside, I'll have both surgeries next week. My surgery this time is at UW Montlake (the main campus clinic), and as I am scheduled first that morning, it shouldn't be delayed like last week's surgery. This should be the last surgery. After this I will have a little bit harder recovery, they tell me, though I think that knowing some of what to expect may be helpful.

The pre-op/ post-op directions is a longer handout than last time, but has a lot of similar suggestions

I will be asked to keep my shoulder angled below 45 degrees for two weeks (or risk pulling the the spaghetti out of the vein), then work on increasing my range of motion during weeks 3-6 in order to prepare for radiation. They tell me that physical therapy will start after 4 weeks and radiation after 6.

lifting and pulling restrictions

My folks had been vising since shortly before my first surgery last week. They left today. It was, of course, really great having them here and it was great that they were able to be here with Alison when Sean and I were doing the first surgery. Unfortuantely they couldn't be here for the second surgery, but I actually think recovery will be a bit "easier" for me because they were here. After the first surgery, I was told to walk 10-15 minutes 4x a day and do a series of minor exercises with the arm. They went on walks with me (and helped make sure I remembered).

how you know that post-op will be more complicated: there's a video with instructions

I was supposed to not exert myself for the week or weeks after surgery and I'm only moderately good at following those directions. My mom actually helped me think about what was exertion and what wasn't. I though glazing some pieces couldn't be that much exertion, but after I spend an hour or two in the studio, I was feeling a lot worse. My mom helped me realize that what seems like not that big of a deal is more strain on the arm that I might realize.

greenware cups I haven't loaded yet (because of the first surgery and Mom's advice)

So, with my parent's voices in my ears, my plan is to take it easier than I would otherwise think I need to and also make sure I am strict about my walks and arm exercises. I can (probably) stay within the limits for 2-4 weeks if I know when physical therapy is starting (4 weeks after the second surgery) and when I can transition out of these limits. I just have to look at it like a job to heal well and assign myself that job as my focus.

Last Week to See: DoVA Student Exhibition 2022

Medusa by Evelyn Ayala-Frutos (President's Award)

This week is your last opportunity to see the YVC Department of Visual Arts Student and Faculty Exhibition at Larson Gallery.

Ake's by Liliana Morales (Best of Show)

The exhibition is up through Saturday, May 28. Larson Gallery is open 10-5 during the week and 1-5 on Saturday. 

detail of how the cups sit in the saucer for Ake's

The exhibition features work by students in clay, photography, drawing, and painting classes in Spring 2019 through Winter 2022.  

Small Coils by Emily Chaidez

The work in this show is especially impressive given the unusual conditions when much of it was made. The earliest work dates back before the pandemic, as we were collecting work to show in Spring 2020, but that show was canceled at the last minute. Some of those students and the online students from Spring 2020-Spring 2021 showed their work in an online DoVA show last spring.

Leatherface bust by Elizabeth Harris

Students in online classes during the pandemic also had the opportunity to show their work in this show. Most of the work is from students who took classes at least partly on campus this Fall and Winter. These students were dealing with classes taught on campus but with 3' social distancing and masking. Most of these classes were also hybrid, meaning part of the class was online and part was on-campus.

Melted Candle by Garret Duffield 

To make things extra interesting, we have more faculty than usual represented in this show. I taught in Fall, but Jeff Kent took over for me in Winter while I was on medical leave.

Teapot and teacups by Adriana Barcenas

Also in Winter 2022, our drawing and painting instructor, John Bissonette accepted a new position out of state, so H.R. Emi taught on-campus painting classes for us. 

Still life by Helina Hahn (honorable mention)

Our drawing and design instructor, Meghan Flynn also accepted a position out of state. Both Meghan and John taught online this year (but somehow got left off the program for the show).

Sick Dog by Savannah Ross (honorable mention)

In fact, Chris Otten, our photography instructor was the only full time instructor who is still teaching full time for us from Yakima at the end of the year. 

Raku Vase by Elizabeth Ortega

I plan to be back in Fall and we've hired a new drawing, painting, and printmaking instructor, Kayo Nakamura who will start in Fall.

Dragon Portrait by Elizabeth Ortega (Janice Buckler Memorial Award for Clay)

Despite the pandemic and faculty switcheroos, the show is impressive (and that's not just me saying that, YVC President Linda Kaminski has said that on at least two occassions, once to me at the opening reception and again later at the Board of Trustees meeting).

Abstract Roses by Savannah Ross (ASYVC Purchase Award)

Though this is the first fully in-gallery DoVA show in the new Larson Gallery, which is quite a bit larger than the old gallery, the student work still manages to fill the space nicely.

Oil Castle by Leah Kuhlmann

There is lots to see and some work to purchase, though the ASYVC student government was generous with their purchase awards, choosing 8 individual pieces to join their permanent collection.

Untitled by Ashley Boroff

In this post, I've highlighted lots of pottery. Students whose work is represented took Functional Pottery from me or from Jeff Kent, Hand-building from me or from Jeff, or Intro to Clay from me. 

Penguin Christmas by Bianca Evangelista

There are also two works by community helper "students" Les Delzer and Betty Thurman (who is also our hourly employee in the studio). 

Lamp by Les Delzer, mugs and vase by Noah Fleek

Both Betty and Les were invaluable to both me and to Jeff in keeping the studio running smoothly during the early days of my cancer diagnosis and during the sudden transition from me to Jeff during winter quarter.

Blue pottery set by Betty Thurman

Jeff only agreed to take over the clay classes about a week before they started in January and only got access to the studio and the online components of the class after that. Luckilly he had taught before, though not online, so he was able to take over without much prep time.

Lovers Teac Set by Julia Lara

Admission to Larson Gallery is free, so stop by this week before the show ends. While you are on campus, you can also stop by the Yakima Valley Middle Schools Art Exhibit at the old Larson Gallery (Larson Gallery Workshop). 

Elephant by Crystal Preciado and Garden Tea Set by Kyree Wright

Surgery & Waiting on the “Tumor Board”

Surgery & Recovery

I'm feeling a bit sore, as if someone punched me under the arm, maybe with something sharp. I had my surgery Monday. Maybe I should call it surgeries, since there really were three different cuts. They took out my port, took out my tumor, and took out three lymph nodes. 

In the week before the surgery, I did a bunch of glazing and loaded a kiln

The lymph nodes/armpit area is the part that hurts. The port area (I'm calling it my portside, even though portside on a boat is apparently the left, not the rigth) is barely even sore when I touch it. I figure that was both the most supercial (as in not deep) of the procedures and they were removing something that wasn't supposed to be there in the first place and hadn't been there long.

I was hoping to get some stuff done in the studio before I wasn't able to work in the studio for a while

The lumpectomy removed the tumor from relatively deeper in my body, but that one doesn't hurt constantly, just when I touch it or something brushes against it. The cut for the sentinel node biopsy is in an awkward place, at roughly the place where my arm folds over my body. I would say it is more on my body than in my armpit, but the bruise covers more space. This one hurts or feels uncomfortable more or less constantly depending on my pain medication.

I'm glad I did so much then, because I haven't felt able to do nearly so much this week

Sean and I were at UW Medical Center Northwest all day Monday. We arrived when and where we were instructed to at 7am, but they really didn't do anything with us until nearly 8am. The only interesting thing that happened was that another man came in, apologized for not having a mask, then took one but didn't put it on and proceeded to check in without it.  A short while later, he and an employee were sitting behind me and Sean and she informed him that the multiple phone calls he missed and messages he ignored were telling him that he had COVID and couldn't come in today. Upon hearing this, Sean and I stood as one and skeddled over to the far side of the room. 

I did a bit of experimenting with glazed and unglazed sections of these port-a-cath bulbs

A few minutes before 8, a chatty woman took us from the surgery waiting area all the way through the medical center to the breast imaging area. Along the way she gave us a guided tour with far too much information, including three different explanations of where the cafeteria is and how to get there. She also pointed out the childbirth center "in case [we] need that later."

I also finished a sculpture I had started during chemo

I needed to go to the breast imaging center because they needed to put a wire locator into the tumor using the mammography machine. They had a fancy chair I sat in that pushed up against the mammography machine. Then the three women doing the procedure manipulated me into the awkward position required and they used the computer to set up a grid thing to orient the needle. 

I'm not actually supposed to be lifting, so my folks (who are visiting from out of state) helped me unload the kiln when I got back from surgery (the next day)

They first numbed the area with a couple of shots, then told me that I shouldn't feel any pain, just pressure, during the procedure. They were wrong, because it hurt quite a bit, so they added more novacaine. Of course, by then my body's panic response had set in. They were able to place the wire, but immediatley after, from my secured position, I tried to remove my cap and needed help because I was suddenly hot and the world was turning grey or black around the edges.

I took some pictures of many of the bulbs, but I am still consdering adding some glaze (the shiny stuff) to some or all of these bulbs

Here's where they broke into a well choreographed maneuver. They rolled the chair back and tipped it into a bed. The lady who had been holding my hand (and took my hat) during the procedure, held my feet up above her shoulders. Another lady fanned me with a clipboard and the third got me wet washcloths for my forehead and chest and for my neck once they started to ease me back to vertical. 

I also have these heart-port-a-cath bulbs, and more heart mugs ready to be loaded sometime

Unfortunately they still needed to finish getting the wire in the right place and taking more pictures. We did that and then they let me rest in the bed-converted chair for a second time. They helped me get dressed and asked if I wanted a wheelchair to return to the surgery waiting room. I said that I was fine without (after all, I had a similar experience during and after the mammogram that immediately followed the original biopsy in November. 

The pieces in the kiln included some newly built work getting bisqued and some pieces with just the first coat of underglaze

They decided to call for a wheelchair anyway, but I was saved from actually having to use it by the fact that the chatty lady didn't listen when they requested a wheelchair. We walked all the long way back up the stairs, over the sky bridge and through the hospital with our chatty host, but I just held onto Sean and ignored everything she said.

I also had pieces with the second coat of underglaze

We were in the surgery waiting room again by a little after 9. My surgery check-in was at 11 or 11:30, but they wouldn't let us leave. We did go for a little walk outside, and I was glad I brought a book, even if I did pretty much hate the book by the end of the day (not necessarily the book's fault). I had forgotten my phone and my kindle charger in Yakima the night before. I was actually starting to worry that forgetting those things, plus having to switch hotel rooms the night before, plus the fact that construction at the medical center meant our directions weren't quite right, plus the fact that we had such a long wait time all were bad signs leading up to surgery. Sean thought all those things going wrong would mean that the surgery would be error free.

I hope to get back to these as my arm starts to feel better

They finally took me back to the surgery prep area a bit early, I think. It felt like we'd already been waiting for eons. They didn't let Sean come until after the IV was in, which was annoying since he could have distracted me. I told her I was bad with needles, but since I was already lying down it was probably fine. While I carefully stared at the other wall, she started by telling me how thick my skin is (which I've never heard before). Once she had the needle in, she said "oh no!" which is basically the best thing someone can say to someone who has a fear of needles. She then explained that she had "blown a vein" or something like that.  I wanted to tell her that all she was allowed to say was "everything is going great" and maybe "I'm just going to do another litttle IV thing that's totally normal procedure and you don't need to worry at all."  Instead I started at the other wall and wimpered. 

My arm after I took off the cotton ball after surgery

She eventually did get an IV in, then told me to hold onto the cotton ball thing for what seemed a long time. Then Sean was allowed to come back and we got to hang out in pre-surgery for 2 or 3 hours. The neat thing was that they had this heater that had a hose that hooked up to my blanket so that my lower half was in a blow up tent of warmness. The warm air feature feels particularly good when they take away all your clothes and replace your cloth hat with a mesh hairnet (even though I'm nearly bald still), but it feels considerably less nice when they've been steam cooking your legs for several hours while you wait, motionless for surgery.  Eventually Sean shut it off for me.

the bulbs are meant to hang on the wall, but I haven't gotten the energy for wall photos yet

The surgery was scheduled to start at 12:30, but actually started about 2:30. The previous surgery had run late and until they were ready they had bascially no timeline for when it might start. I was hooked up to an IV and hanging out in my hospital bed. Sean was entertaining me. Around 12:15, our anaesthesiologist came in and informed us that she had no lab work. I have serious questions about why she'd notice this 15 minutes before surgery, but they were, with some fuss, able to get the last pre-chemo labs sent over from Yakima. 

Right now the photos are just based on how they will sit on the table

Once the surgeon was done, she came in, apologized and answered our questions. Then I got wheeled in to surgery. Our four questions were: Can we drive home tonight (because they originally wanted us to stay until Tuesday, but our hotel wasn't great). She allowed us to drive home. I asked for my port (after the surgery I wanted to take it home). She said no. I said "pretty please" she said no. Then I described my art project and she said she'd check. I woke up to find my port in a specimen cup with my things near my bed. We also asked about the possibility of another surgery (answer to follow).

My hard-won port in a specimen cup

From my perspective, the surgery was quick. My brain woke up in recovery a little while before my eyes would stay open. I woke up in pain, but the nurse next to me immediatley asked if I was in pain and gave me some painkiller which quickly made me feel better. It felt like I spent maybe 20-30 minutes in the in-between zone of waking up. Then it felt like I spent a full hour fully conscious and just waiting for a spot to open up in the second recovery area. 

The port is much simpler and a bit smaller than I realized

From Sean's perspective, they told him I was done with surgery about 4:30, told him it would take an hour or an hour and a half for me to wake up, then didn't talk to him again until 7, when they wheeled me into the second recovery area. When he came into the second recovery area, he was feeling pretty worried that something had gone wrong. He was also anxious to leave, as was I. 

I can see that my port is pictured on this brochure, but the one I made for these bulbs is based on the more visually interesting one below it.

By the time we did leave, it was 7:31. We'd been at the hospital for 12 hours and about 45 minutes. 

I also am some ways off on the size, as you can see when comparing this port and this mold

Surgery Results, Pathology, and the Tumor Board

We were told that the pathology results would be ready in 3-5 days and that we'd hear from the surgeon with those results in 5-7 days. There were two parts of the surgery whose results would only be deterimined by the pathologist after the fact. The tumor needed "clean margins" meaning that they got all the cancer out. If they didn't get it all out, they'd need to do a second surgery to get what they missed. The sentinel nodes they removed would also be tested for cancer and if they found cancer, they would need to take out more nodes with a second surgery. 

 

I do plan to make a sprig mold of the real port, but again, I'm waiting until I have more stamina

Tuesday morning I read the surgery notes in MyChart online. They indicated that they got out the clip (marker from the biopsy) in the tumor, but didn't find the marker in a lymph node. This is the same marker they couldn't find in ultrasound in February. 

During chemo I made these bulbs by impressing my plastic infusion bracelets into the wet clay. I've got so many infusion bracelets it seems like they should be useful for something 

On Thursday the pathology report showed up my MyChart. When I first read it, I focused on the fact that they had found cancer in two of the three sentinel nodes they removed. They had clear margins on the tumor, but cancer in two of the nodes. Based on my understanding from the doctor, this meant that I would need the second surgery.  

But I keep coming back to my (apparently inaccurate) port-a-cath bulbs

However, after spending some time feeling disappointed, I reread it (and discussed it with my Dad) and we realized that the nodes were negative for macrometastases and micrometastases, while two had "isolated tumor cells."  Not sure what this meant, we searched the internet and determined that it either meant a second surgery or not.

I started doing more underglaze this week, but basically exhausted myself in a much shorter time frame than expected

This morning I got a call from the surgeon and she explained the pathology report. (I was very happy she decided to call this week and not wait until next.)  The surgeon explained a bit more about the lump. They removed the original tumor, but also found DCIS (Ductal Carcinoma in Situ) which is basically pre-cancer material. They removed 23 mm of this DCIS with clean margins as well as 12mm of the tumor. I don't understand if these were connected or not.

After wearing myself out, I decided to step back and worry about finishing these later

The nodes are a "bigger question mark" according to the surgeon. She was going to ask the pathologist if she had found the clip (the marker from the biopsy) in any of the three nodes, because she couldn't find it during the surgery. 

The upshot is I've got sculpture and bulbs and mugs all waiting for me, but I'm not ready yet

But the bigger issue is that these isolated tumor cells are in a grey area. If we hadn't already done chemo, these isolated tumor cells wouldn't be a bit deal and the chemo would clean them up. But, since we already did the chemo, she's a bit concerned that they didn't go away with that neoadjudavent chemo. She is going to present my case to the tumor board next Friday. The pathologist will show slides, they'll have an answer on the clip, and they'll look for evidence of chemo working on the tumor cells. The radiation oncologist will also give her opinion as to whether radiation will be able to get rid of any isolated tumor cells in other nodes.

My folks are visiting and they and my husband are all helping me remember not to overdo it.

I'm glad that my surgeon called to help me understand, but we're essentially back to waiting for an answer until Friday. I was scared for a minute that my surgeon was going to say that I got to decide. That sounds like a lot of pressure and I'm glad the experts are going to discuss and come to concensus together.

Instead we're going for walks and I'm avoiding lifting and reaching

If they determine that I don't need the surgery, I will move on to radiation. Now we see why radiation is still so important after 20 weeks of chemo and surgery!!  Next Thursday I have a check-up at SCCA to see how I'm healing after surgery. They radiation starts anywhere from 3-12 weeks after surgery, but presumably after I'm able to lift my arm without pain.

And I'm sure I'll feel better fairly soon and be able to finish my stuff

If they determine I do need a second surgery, that will be an axillary lymph node dissection taking out 10-40 lymph nodes. This comes with a fairly high (30%) risk of lymphedema, so they also recommend a plastic surgeon reroute my lymph system at the same time. This would mean one more surgery (2-4 weeks after the first one) that will take about 3 hours. There will be more significant recovery time and that probably pushes the radiation back a bit later in the summer.

In the meantime, at least I can keep sharing in-progress photos