My World is Strange Now (and this post is not about ceramics)

TW: No ceramics today, just cancer. I'm feeling strange, so I don't l know if I can keep the tone light today. If you're not feeling that, move on by. The previous post is about sculpture; it's way more fun.

yeah, this is how I feel

I'm getting ready to poison myself later this week. Was that too melodramatic? I'm feeling strange. My world has gotten very weird lately. When my daughter was little, we periodically found ourselves saying things we'd never anticipated saying before, like, "don't put that screw in your ear!"  This feels a bit like that. I find myself planning for things I never imagined. What will it be like to make myself intentionally sick later this week? 

trying to get a handle on what to expect from chemo

Last month I was diagnosed with invasive ductal carcinoma. That's breast cancer to those of us who aren't speaking fluent cancer-ese right now. The poison I plan to take later this week is chemotherapy, specifically neoadjudavant chemotherapy designed to reduce my tumor and the cancer in my lymph node(s) and eliminate any cancer that might have traveled through my lymph nodes to the rest of my body, but still be too small to see in a scan.

In July something felt funny in my breast. I couldn't articulate it, but I had noticed changes and tried to talk to my doctor about them. She said I was fine. (She didn't actually check.) It seemed like a good answer at the time. It seems like a bad answer in retrospect. It seemed, frankly, scary once I was diagnosed but before I'd talked to some other doctors.

At the end of September I felt a lump. I'd been paying some attention to that breast since July. Based on what the doctor said I was just waiting for something to change or stay the same (yeah, I don't know either). This day I had just gotten home from work. My folks were visiting. My mom was in the kitchen and I was talking to her from the dining room, maybe taking my coat or bag off. This time, just brushing my hand against my side, I felt a distinct lump; I was no longer unable to articulate what felt funny. But my doctor had said that sometimes breasts feel funny, so I waited a few more days before scheduling an appointment. And I didn't tell my mom (sorry Mom, I didn't want to worry you). 

my friend ordered her kids some necklaces that say "F U Cancer" but they sent French versions which she gave to me and my daughter. I turned mine into a bracelet

Then it was another doctor, a mammogram, a biopsy, and a really crappy return visit to the place where I had the biopsy. When they call you and ask you to come in to discuss your results, you know you aren't likely to be told everything is fine. I was still hoping the verdict would be that my stuff was pre-cancerous or needed to be retested or something. 

My intial impression of the person who told me I have cancer was that she was just a terrible person. Who would want a job where they just tell people they have cancer? Why was this person so mean and awful. Obviously my first impressions may have been colored by my emotions. I now think this same person is just wonderful. First impressions, eh? It's Austenesque. 

she gave me a book to try to help me understand

Remember when I said everything is strange? Everything is so strange. This morning I was bubbly and chatty and feeling accomplished: not only did I work out and make a call I was dreading and return some emails, but I scheduled an echocardiogram, got said echo, and went grocery shopping. I chatted with the guy doing the echo and he showed me the parts of my heart and told me it looks healthy. (I have a "good heart".) It was really interesting to see my heart in an ultrasound. And then, like 20 minutes later, I started crying in the car for no discernable reason (except, y'know, the big one). 

I haven't cried much. I cried the first day when I told my husband and my folks. Then I got it together to tell my daughter. I've been anxious and I lost my appetite in the horrible days between when I was told I have cancer and when I actually talked to one of the cancer doctors. Seriously, they give you a book about cancer and send you home. Like, who is physically capable of reading the book about breast cancer immediately after being told they have breast cancer? When I finally did read it, a few days later, I found that it was really helpful. Until I got to the staging section and had to stop (I didn't know enough of my own results yet and the stages sounded scary).

the book is super useful, but I'm not a fan of pink cursive chapter titles and inspirational quotes

November was appointments and waiting and telling people and worrying, and trying to make lists just to give myself a feeling of control. At that point the bit of control I was able to wrest back from the now-strange world was making a list of all my appointments with check boxes for both the scheduling and the appointments. When I couldn't do anything else, at least I could check off that I scheduled the appointment. That list includes tests (CT, Bone Scan, Echocardiogram, MRI), and consults (surgery, oncology, radiation, second opinion, and genetic counseling), port surgery, and discussions about work/leave.

my to do list (to try to give myself some sense of control)

I'll be starting chemo on Wednesday. And I won't be teaching in Winter. The three IV bruises from the CT, bone scan, and port surgery are all gone now and I should be done with IVs because they put in a port-a-cath (TW: the link is from Nurse.org and has a diagram; click through only if you are ok to see that kind of thing) for my chemo. The way I understood what the doctor explained to me, the port just allows me to have a quick access port for chemo so they can skip finding a vein. But today in a podcast about cancer (because I listen to podcasts about cancer now), they said that the location (on the chest near the heart) means the the turbulence of the heart prevents the chemo drugs from lingering in the vein. I'm not sure if that's true, but the echocardiogram doctor said that the heart moves blood through your veins pretty quickly from anywhere.

my powerport (port-a-cath) guide

The cancer I have is apparently agressive (or looks like it is) and I have some lymph node "involvement" meaning that the cancer has moved from its original tumor location through the lymph system. The current scans and mammogram show that it is in one lumph node, but I have an MRI scheduled for this weekend because, apparently mammograms aren't as clear for "young" people like me. 

Because the cancer has moved at least some ways from the original location, there is some risk that little bits of cancer have found their way to other parts of my body. The plan is to start with 20 weeks of chemo (I had to take a little rest now just from thinking about 20 weeks of chemo!) to help eradicate any bits of cancer in the rest of me and also to hopefully shrink the tumor and the cancer in the lymph node(s). Later, I'll do surgery and radiation.

My medical bracelet for the port

I feel pretty confident in my doctors, in large part because they're all in agreement. In Yakima I met with the surgeon (who basically said chemo first, put the port in, and told me about my surgery options for later), then I went up to Seattle Cancer Care Alliance (SCCA) for a "second opinion" though technically only the surgery part was second and the oncology was first. I met with the Yakima oncologist two days later.

Immediately after I was diagnosed, I contacted a friend who is going through chemo right now and asked her to tell me everything I needed to know. A bit later I found out that another friend had had breast cancer, and got her opinion, and then the opinion of another couple of friends who have/had breast cancer. Everyone said go to SCCA, so I did. Most of them also said that Yakima's North Star Lodge was pretty good, but that SCCA were good folks to be in touch with because of their experts, technology, and options that might not be available locally.

Everyone I've talked to so far (after my primary care provider) has been incredible. Seriously, everyone; I'm talking nurses, surgeons (2), anesthesiologists, radiation oncologists, chemo oncologists (2), front office staff, nurse navigators (2), and even billing people, have been great. Yes, you heard that right, billing people treated me well! I have experienced exclusively compassion, clarity, support and, get this, fast answers and call-backs.  I know, now you're jealous that I got medical folks to call me back quickly and billing people to resolve issues promptly. Apparently cancer gets you that kind of service, who knew?

This map to North Star Lodge makes me laugh. If you don't know where you're going, how could this map possibly help? They haven't even marked North Star on the map! (Also, the directions tell you to turn on 39th Ave, but 39th isn't identified)

The woman who told me I had cancer (who I initially hated), then proceeded to be ultra-fast in returning my calls and compassionate and clear in reassuring me about timelines, sheduling, insurance, and medical questions. She's an absolutely rock star and I totally get why she does this job (I feel bad for hating her for a few days after she told me bad news). 

the notebook they gave me had a whole list of folks for me to add their contact information, but I have two of most of these, and none of several so I haven't really used it.

The other group of beautiful humans has been my incredible friends and colleagues. (Crying again, this is not normal for me). My family has been lovely, but that's like, assumed, right? I know I have my family and they love me and suppport me and they are willing to listen to me worry about things that probably worry them, too and then resist the temptation to let me know they're worried. Except when my mom was absolutely giddy over the phone after I found out the CT and bone scan were clear. I was giddy too; I was terrified that it had spread beyond the lymph node(s) already.

there's one spot for family/friend. which makes me wonder, first, why you only have 1, and second, why you don't already know how to contact them.

I have an absolutely incredible group of friends and colleagues. I can't believe how many people have offered to help, have actually taken stuff over from me so I don't have to worry about it, have offered to cook for me (knowing, at least in two cases, that I hate cooking), or have offered other kinds of support. I am lucky be able to lean on friends who know medical stuff (Becki and Nina) and people who have experience with cancer (who I won't name for their privacy) and I've been able to pick the brains of these intelligent and lovely people as I worry through my stuff. 

I can tell the whole thing has been a strain on my family (and me). My daughter is a teenager, so she was already emotionally sensitive and a little unpredictable, but I've noticed that she's been closer to tears (and me too, based on today) and all three of us are maybe quicker to frustration that we might otherwise be (thought, with a teenager it's a bit hard to tell). Immediately after the diagnosis we did lots of hugging, but now we've been living with it for 4 weeks and trying to get stuff done and I think the strain of functioning while this sits with us is tough. 

The thing that has been hardest so far for me has been the unknowning. After the biopsy, I had the information that it was invasive, in at least one lymph node, and fast growing (grade 9). But I didn't yet know if it had metastasized beyond the lymph node into other parts of my body. According to the book they gave me, it could be anywhere between stage 2B and 4. Once we had the scan results, waiting over the Thanksgiving holiday week/weekend for the port surgery seemed to take forever, then it was hard to wait for my SCCA and oncology appointment because it felt like such a long time to waste while my cancer sat there just growning and potentially moving through my lumph nodes!

All along the more information I've gotten, the better I felt, but also all along there's been gray areas. 

The directions for quarantine after my Covid test and before my surgery were kind of fuzzy, since I was given this list of instructions, then specifically told to ignore at least 3 of the items pictured.

The SCCA visit was great for filling in some of those unknowns. Apparently I am a person who likes thorough explanations and tons of information. I had eleventy-seven questions and I felt better once they were (almost) all answered. I have separate pages of questions (and now answers) for basically every doctor, as well as questions about genetics, insurance, medical leave, etc. 

Two days later, last Thursday, I saw the North Star oncologist in Yakima and her recommendations were basically the same as the Seattle oncologist, though her warnings about the serverity of my reaction to the chemo were much less dire. I have a "Teach" scheduled at Northstar tomorrow where I believe they will tell me all about the medicines and risks and side effects and all that. I have another list of questions for tomorrow, of course.

I am scheduled to start chemo on Wednesday. I realized today, after the second (short) crying bout, that I am terrified. I might also be reacting to the timing. Final grades for Fall were due Friday, so I am pretty much done with work stuff until Spring (or possibly Fall, depending on how the chemo goes).  The end of the quarter is often a stressful time. Usually in December I transition into Christmas gifts and travel plans, but this year we're staying in Yakima for chemo. All this means today was kind of an open day, with only the 15 minute echo scheduled. I really don't like not having a plan, and right now, I don't feel like I have almost no idea what will happen later this week. I mean, I'll get medicine, followed by poison (chemo), and then the next day I'll come back for a growth factor shot to help my body make more white blood cells, but how will I feel? how long will the chemo take? how long will I feel bad? will I be able to eat? will I be ill? will I spend all day in the bathroom? will I feel weak? will the first infusion be better or worse than the second? will my hair fall out in the first week? will I care? I don't know any of this. I'm guessing I'll have answers to only some of these questions tomorrow.

According to the SCCA oncologist, I will feel like I have the flu for 5 days every two weeks. According to the Yakima nurse, "I hope it won't be that long," according to the book, the side effects of these chemo medications include nause, vomiting, 90% to total hair loss starting as early as next Wednesday, sore mouth, and much more. According to some podcasts and online cancer groups, I'm going to be absolutely miserable from now until May 4, or longer, or not that long. Or maybe I'll be fine. Ugh, it is hard to plan for misery, but even harder, in some ways, to plan for anything ranging to misery to slight tireness. According to my book, I shouldn't listen to anyone else's experience because everyone cancer and treatment and reaction is different. According to my husband I'll feel better than I think I might. But that's kind of the thing, right? I'm trying to make a plan for misery, mild discomfort, and everything in between. Sigh.

Well, if you've read this far, I am kind of amazed, actually, but the writing was therapeutic for me. I'm feeling better, just getting some of it out. I thought I had some funny, witty, or interesting things to say about this experience, but this is what came out instead. Maybe next time I'll share those strange thoughts, instead of this mix of data and fear and gratefulness. Sigh. Tonight is looking like a night for hugs on the couch while we watch Ghostbusters. 

This Ghostbusters, obviously