Surgery, Recovery, & Getting Back (Towards) Normal

ALND & LYMPHA

I've now had the second (or third or sixth, depending how you count) of my surgeries for this cancer stuff. We drove up to the UW campus on May 31 and stayed overnight on campus so we could be at the hospital at 6am for the first surgery of the day. The first part of the two surgeries was an ALND (axillary lymph node dissection) to remove a batch of lymph nodes from my arm area. The second part was a LYMPHA procedure done by a plastic surgeon to reconnect my lymph drainage system to my veins.

my photo booth is still set up from when I tried to take pictures 3 weeks ago but was too exhausted

We were assuming that with just one surgery slot, and no pre-op appointment like last time (when I had to have a wire locator put in on the morning of surgery), and being the first surgery slot of the day, we would be out of there faster than last time. That wasn't quite how it worked. Last time we arrived at 7am and left at 7:30pm.  This time we arrived at 6 am and left at 5:30 or so. Most of the extra time was because I had a hard time waking up from surgery--or at least I had a hard time being awake and un-dizzy.

my new style is button down shirts because I can't lift my arm to put on regular shirts

The surgeries went well. There wasn't a lot of variability built into the procedure. In the last one, the concern was clear margins on the tumor and checking the nodes for cancer. In this case, they were just taking out nodes and the results wouldn't mean more surgery, as I understand it.

When I woke up from the surgery, I had a bright blue stripe around my upper arm. Upon closer inspection (the next day), the blue stripe was perforated with a line of little dots. The blue is the dye they had injected into my arm to mark the lymph nodes. In the earlier surgery (sentinel node biopsy) they had injected this dye (I assume it's the same since the color is the same) into my breast to mark the sentinel nodes. This time it looks like they injected the dye in a ring around my arm via a bunch of separate needles/pokes.

the blue mark was still fainly visible on my arm the other day

Lymph Nodes and Cancer

That first time they took out 3 sentinel nodes. Since those had "isolated cancer cells" that were "residual" cancer that had survived the chemo attack, they wanted to take out more nodes in case there was more cancer in more nodes. Also, they knew that the biopsied node that definiately had cancer hadn't been removed because they couldn't find the marker.

Shiverball (Buddy)

This time, they took out 12 nodes. We asked ahead of time how many they'd remove, but my surgeon said they wouldn't know. Apparently they take out the blue stuff, but since the nodes (or some of them at least) are so small, its hard to tell how many are being removed. They're being removed in a cluster of lymph nodes and connectors (I've been calling them lymph tubes in my head, but that seems like it probably isn't the correct name). The pathologist would count them later when they checked for cancer.

Darter

So, it turns out that they took out 12 and all 12 of those were cancer free. They also found the missing marker from the November biopsy (the one they couldn't find before). So the good news is that there's no more cancer in the nodes. The frustration, as I see it, is that, in hindsight, that probably means I didn't really need this surgery. There was no way to know, and we were being safe, but its still a bit annoying while I'm sitting here hurting.

Recovery

I feel significantly worse after this surgery. I'm not trying to complain, but it seems like I've been recovering from surgery for a long time. Since my first surgery was May 16, and I never fully recovered from that one before going for the next one on June 1, I suppose it feels that way because it's true. I've been in the first two weeks of recovery from surgery for most of a month!

Alison (Franklin) running in her last race at Ike 

I do feel happier, if not less sore now that my drain is out. The drain was essentially a tube coming out of the side of my body, under the area where the lymph nodes were removed. I had to empty the drain regularly and it was gross, but I was also worried that I'd pull it out or damage it in some way. Luckily someone at my primary care clinic was able to take it out last week. The person who took it out was the person who I'd first gone to after feeling the lump in September, so it felt a bit strange to go to her after SO MUCH has happened in the intervening 8 months.

later in the same race, I think

The restrictions this time around are both more clear to me and easier to follow, in a way. I've been told not to lift my arm above 45 degrees for 2 weeks. The plastic surgeon explained that if I did, I'd risk pulling the lymph tubes (spaghetti) out of the vein. That's sufficient; I get it. I will not lift my arm for that reason. Especially after we paid for that surgery out of pocket!

her name up on the scoreboard

That arm is also a lot more sore, tender, and numb. A few days after surgery, I started having sharp needle-like pains in the back of that arm, which is apparently the nerves waking up or reconnecting or voicing their displeasure at their recent treatment. Once I found out that these pains are acceptable, I felt better mentally, but it still isn't an enjoyable feeling. Sometimes it feels like a single needle (I took off my shirt to look for a pin or a bug in my sleeve when it first happened), but sometimes it feels like someone stuck a needle in my arm and then pulled down the length of the arm. Not fun.

she ran in the 800, which ended up being the last race before they called the meet for lightning

The numbness also makes sensations on that arm feel strange. Sometimes it feels like water is dripping down my arm, othertimes I fuss with my sleeve trying to figure out what is pushing against my armpit. The feeling appears to be coming from inside the armpit, so it's pretty hard to solve by tugging my sleeve down.

Alison at her first high school marching band event for Davis in June (before her final 8th grade concert) 

Post-Op & Physical Therapy

I'm heading to Seattle Cancer Care Alliance (SCCA) again tomorrow for my second post-op appointment. Hopefully the doctor will say that I am healing nicely. I also think that I will be allowed/required to start working on increasing my arm's mobility. The goal is to be able to put that arm straight above my head for radiation in about 4 weeks. The surgeon indicated that I'd start physical therapy about 4 weeks after surgery.

Alison helping out the 7th & 8th grade band

I had a paper referral to a local lymphedema/physical therapy place so I called them yesterday. The first problem was that SCCA had the wrong number, but when I got through and asked about physical therapy after an ALND, the lady said that they don't do Physical Therapy. I said that they were recommended by SCCA, at which point she said "Oh, we do Occupational Therapy."

Alison (on drum kit) during Jazz Band

Right, because a normal person has any idea what the difference is between PT and OT (is there one?). So, after convincing her that my referral was relevant and that I could be seen in July instead of August, I made an appointment. I'm not clear what I will be doing there, besides stretching my arm, but my approach to all of this cancer treatment stuff is to do what I'm told.

Following Directions

My daughter and I went to the dentist yesterday. The last time we went, in December, I had been diagnosed but hadn't started chemo and Alison hadn't yet gotten her braces. Yesterday she was praised for having kept her braces and teeth really clean and for flossing every day. She was told to floss every day (and given some horror stories of what would happen if she didn't) so she did. They seemed to be amazed by that.

Cali on her newly reupholstered chicken lookout tower

It reminded me of my friend who is a nurse being amazed that I followed all the directions about walking, exercise, drinking 3 liters of water each day, and eating foods aimed at conquering anemia and kidney problems during chemo. She seemed to be amazed that patients would follow their doctor's directions precisely, just like the dental folks were surprised that a kid flossed as directed. 

Buddy sitting strangely

I also find it amusing that people praise me for being strong or brave. I literally just do as I'm told. And often that means sitting down or lying unconscious while doctors or oncology nurses do the actual work.

Weeks 2 & 3 = no chores

With that in mind, I have had some more trouble following the directions around what not to do during recovery from surgery. The directions very specifically say that I am not supposed to vacuum, do laundry, or do chores for the first 3 weeks. There has been an ongoing discussion in my household, since before the second surgery, about whether that means I can do laundry or vacuum with my right hand only. There has also been discussion about what counts as a chore. 

vacuuming and laundry listed separately from chores

I am certainly doing less, but probably not nothing. I have had a few times when what I thought I could do was more than what I actually could do. After my first surgery, when my folks were visiting, I thought I could work in th studio, but spending just a bit of time glazing absolutely wore me out and I haven't done that since.

I'm sad because these mugs still haven't seen the inside of a kiln and I can't glaze

After my second surgery, last week sometime, I thought I could do a bit of cooking for dinner. After a bit, I realized I had overcommitted, but Sean was out of the house and Alison was doing homework. When she came in to talk to me, she reached for my earphone to turn it off or take it out. My reaction was to snap at her for hitting me, at which point I realized that I really needed to ask for help. (How could I possibly think she was trying to hit me precisely in the earphone?). I realized that what seemed like a small amount of effort on a regular day was too much and that I needed to rest while someone else finished cooking. Since then we've been keeping it to Costco meals or things Sean cooks.

Soon. Soon I will be able to finish glazing

Getting Back to Normal: Hair

On the other hand, it isn't all pain and unpleasantness. My hair is decidedly growing back. It still feels quite sparse on my head, but my eyelashes and eyebrows are making fast improvement.  When they started falling out, they did so gradually. In fact I still had one long eyebrow hair last week when the new eyebrows started growing in. 

the one lone eyelash holding on a few weeks ago

I had forgotten how many eyelashes I used to have, until I saw the absolute army of them marching across all four lids this week. They may be short, but they have lots of friends. Also, I've discovered that I do not have the skills or stability (or patience) to take a photograph that shows short baby eyelashes in focus.

eyelashes and eyebrows starting to return

Friends & Family

Speaking of friends, I was able to go out for dinner with friends on my birthday between surgeries and this weekend I went with another friend to celebrate two of our friends getting their PhDs! The party was delightful, with great food and great weather and I got to see (in person!) and talk to colleagues and friends who I haven't seen very much in a long time because of COVID and then cancer. 

Congratulations Doctoras!

I'm fairly terrible, apparently, at remembering to take pictures. Can I blame the recovery for forgetfulness or distraction? Or maybe we were just having such a good time, that the phones didn't come out. I went out to dinner with friends and didn't take a single photo. And I didn't take out my phone at all during they PhD party (so I've stolen a photo from that party from one of the graduates). 

let's pretend this was a picture of my family and/or friends!!

My parents were here for nearly 3 weeks. They went to 3 of Alison's track meets (including 2 Sean and I couldn't go to because we were in Seattle), cooked, shopped, helped me recover, and generally helped out. It was great having them with us, especially since we haven't seen them in person since summer. But I didn't take a single photo that provides any evidence they were ever here.