The Onramp to Breast Cancer

[gwendally]

One of the things that was really awful about getting breast cancer is how there wasn't a *map*. I had to learn each step by getting there and flailing around and figuring it out. It was horrible on every level. So I'm going to lay out the path as I remember it for the past 6 weeks.

1.) I noticed something odd on my boob. Hurdle number 1 was to get scheduled for a mammogram. It took me weeks to get one booked. I did this wrong, as I was supposed to contact my doctor first and ask for a diagnostic mammogram, but instead I went the route of asking for my normal annual one. That's, of course, the system I knew. But when I went for the mammogram and they didn't want to give it to me because it was coded as a free thing under insurance when they were supposed to get paid for more views or something. Not sure I understand this exactly, but that's how it felt. I got scolded at while topless in the mammogram room by the tech who told me I shouldn't be there, I should have called my doctor. What I could see her saying was, "because you're damn sick and I only see well people." So, that was my introduction, heartless scolding as I sit there half naked and scared and being denied health care because of insurance codes. Oh, and they gave us incorrect directions for where to go and I had to scramble to be there on time. That turned out to be a common thread, too. I bullied the tech into doing the annual screening I was due. She muttered about how I was going to have to come back, but I did it anyway.

2.) My doctor called the next day and told me I had breast cancer - she could tell already - and the next step was to get more diagnostic views. She asked me which cancer center I wanted to use, as if I had any information at all about any of them. I gave her the answer I had heard in a tip somewhere. She gave me a referral to a surgeon associated with that group.

3.) That started a scramble to figure out how to schedule diagnostic views. We tried all over the place and found an opening in a town nearby the next week.

4.) We got an appointment with the surgeon for after the diagnostic views.

5.) On the way back from the ultrasound that confirmed the cancer, and worried about my shortness of breath, which google said wasn't a symptom of cancer, I freaked out about it maybe being stage 4. I tried to get a chest CT or a a chest Xray. I needed a referral for this. My doctor was on vacation. I went to her office and asked someone for a referral. I needed to be examined to get a referral. I waited in the waiting room, pissing them off, until someone came out and examined me and ordered a Chest X-ray. Sadly, it appears that being able to bully is a necessary component of receiving medical services around here.

6.) We scheduled the Chest X-Ray. It was clear. (Spoiler alert: there's still something causing the shortness of breath, though.)

7.) The biopsy would have been next, either an ultrasound-guided biopsy, or the core sample the surgeon did in our initial visit. The core sample is experienced as someone stabbing you several times in the chest. No one seems to think you need to be fazed by this. (As it turns out, deeply unpleasant things are every day activities in this new life of mine.)

8.) The surgeon ordered a breast MRI. We scrambled to figure out how to schedule a breast MRI, when no one seemed to have openings for weeks. We found one at another system in yet another town. They gave us incorrect directions for where to go and we struggled to get there on time.

9.) With pathology underway (expected to take two weeks) it was time to find and schedule with an oncologist. I searched for oncologist reviews or referrals and no one could give me ANY HELP at all. I ended up looking at Google reviews or something like that. The Cancer support group refuses to discuss the various cancer doctors. My own PCP had no knowledge. No one had anything helpful. So I threw a dart and basically got the one who could schedule with me on the date my results would be back. She works with the surgeon who I already liked, and that was just going to have to be enough. (From where I sit right now, it IS enough. The treatment plans are pretty set in stone based on research studies. I'm getting the same treatment plan anyone with my type of cancer would get.)

10.) The MRI showed lymph node involvement, so now we needed to do more staging scans. I was told to schedule a Chest CT and an abdominal CT and a bone scan. They also needed a blood test. These are three different departments all needing separate authorizations and appointments. The hospital is half an hour a way. I scrambled to get them all scheduled for the same day, and discovered a "nurse navigator" who could help me with this. She was associated with surgery, though, and if it has been stage 4 I wasn't a surgical candidate anymore (they'd toss me over to oncology to do some tumor fighting) so it wasn't totally clear who was supposed to be working with me. We were late finding her.

11.) Somewhere in here they started requiring me to get PCR covid tests, which I did, but apparently they weren't the right SORT of PCR covid tests and so they had to redo them. I am shaking my head as I say this. I'm doubly vaccinated and there are no current cases of COVID in my area, but whatevs. I had to schedule and show up for two of these and ended up doing it three times in total.

12.) I don't recall how this interacted with the CT Scan, but my memory is that after it came back showing me as NOT Stage 4 (but still either stage 2 or 3), they needed to choose between a lumpectomy and a mastectomy, and if I was doing a mastectomy I needed to choose if I was doing reconstruction. I'm mere moments from discovering I'm not imminently dying and the aesthetics for my boobs aren't top of mind at the moment. I decline additional plastic surgery and skip the consult with the plastic surgeon (who was on vacation anyway, and getting plastic surgery would have delayed cutting out the cancer by weeks.)

13.) An incidental finding on the Chest CT explained the shortness of breath. An additional test had to be arranged surrounding that. It's still not 100% clear, but apparently it's not imminently life threatening. I'll spend more time with pulmonologists later.

14.) So, since I'm not Stage 4, now we want to know if I'm truly Stage 2 or 3, that is, is cancer in my lymph nodes as it appears on the MRI? The next thing to get scheduled was the sentinel lymph node biopsy. (If I'd been likely stage 0 or 1 they would have done that at the same time as the lumpectomy, but I was 2 or 3 so it was its own thing to determine if I needed a mastectomy or a "modified radical mastectomy.") If it had turned out clean then I could have kept the rest of my underarm lymph nodes, thereby skipping a lifetime of lymphedema. The sentinel node biopsy is a surgical procedure done under twilight sleep, but it involves injecting dye and tracing it, so it takes all day and is fairly painful. I was able to work the next day, but it was a full day of treatment.

15.) Somewhere in here we also needed to do genetic testing - necessary to know if we were going to be taking both breasts or just the one with cancer. We scrambled to schedule the genetic tester to do the blood draw done while I was in the hospital for the sentinel node biopsy, but it required fine coordination as the blood people are down the hall and don't usually travel to the surgical wing.

16.) I had my first consult with the oncologist about three weeks into this. She concurred with the surgeon that I should start with surgery. She basically did a meet and greet to turn me into an actual human in her mind. It went so-so. I feel like I was auditioning to be someone she cared enough about to work with. I learned nothing, but it was necessary for her to meet me I guess. (Later I realized that I should have gotten a second opinion for a different oncologist just then: the surgeon and the oncologist worked together too closely for the oncologist to tell me the truth that the axillary node clearance the surgeon was planning actually DECREASED my chances for survival. It's an old-fashioned technique to just bluntly cut things out. Losing those lymph nodes was a huge deal and misttep: this was the only moment when someone COULD have told me that.)

17.) Around this point, about two weeks after my mammogram, my health insurance company figured out from my billing activity that I had breast cancer and they simply canceled my insurance. Just cut it off. No warning, no reason, just malevelant evilness. I think they were hoping I'd pivot and go get insurance somewhere else on the exchange or something. My executive assistant spent HOURS AND HOURS over DAYS AND DAYS getting my health insurance reinstated. Oopsy, they say, sorry about the glitch. We were unable to schedule the mastectomy until this was cleaned up. The glitch continued for weeks and months after, as they retroactively changed my insurance number and all the claims to the one I actually had at the time were ultimately denied. Fighting BC/BS rivals fighting cancer as one of my new hobbies.

18.) We got the pathology back from the lymph node dissection and it was bad - we were going to have to take all my axillary lymph nodes. We scheduled the surgery the instant the insurance issue cleared, it was going to be a long one, we asked them to install a portacath at the same time. They scheduled it for the end of the day on the next available surgery date and told me I wasn't authorized to stay overnight in the hospital. So we scrambled to get authorization to stay overnight in the hospital after I came out of the recovery room at 9 PM. (No one fed me that day, so I'm super glad I brought my own soup and a container to heat it in for my breakfast around midnight that day.) Oh, and we also had to scramble to get authorization for my husband to be with me in the hospital room.

19.) We got orders for a visiting nurse, it was authorized and scheduled. The case manager came to see me the day after I came home from the hospital. She explained that there was no one actually available to visit me. (16 days after the surgery a visiting nurse called to see if I needed anyone to come see me. I was out of town, back at work, I cancelled her visit. I needed her once a day for four days, not twice a month for four months!)

20.) There were two or three or four post-op visits to schedule. Those were easily scheduled - no extra pre-auths required and they scheduled the next visit while I was in the last one. The only trick was that they were at different places and I didn't always know where I was supposed to go. At least once I went to the wrong location and had to scramble to get to the right place. Hospitals are very confusing. There was a surgical center and a breast center and a cancer center and an exterior office building, plus blood testing and imaging were separate places. I literally needed a map of the various places (with similar names) and I never got one.

21.) There was an oncologist follow-up to schedule. I'd met the oncologist before the surgery where we discussed the choice of chemo or surgery first. I chose surgery first for a variety of reasons, but chemo first is a more common option. I'm glad to have done it my way (and the surgeon and oncologist agreed) but there are advantages to doing it the other way. I'm just mentioning this because it was TOUGH to get into see the oncologist. Now I understand better that they work in sequence: the surgeon's office had me (probably from that first phone call from my PCP as she'd seen how big my tumor was) and that was that.

22.) At the oncologist follow-up, she said the next four things are to schedule the port-a-cath (already done!) and an echocardiogram (chemo causes heart damage) and I need some baseline blood work and I need to schedule a "chemo teach". None of these things were easy to schedule.

23.) At this point Blue Cross Blue Shield AGAIN decided to stop authorizing treatment just because. As I write this I have not yet been approved by my insurance company for the chemo everyone knows I need. I'm either Stage 2B or Stage 3 cancer (it's a fine line in my case) and this isn't even slightly controversial, they're just being evil.

I don't know where these go, but in here I also had:

• a scheduled meeting with a social worker (I asked her how to apply for a thing I'm eligible for and she didn't know.)
• I had a call from a "befriender" at a cancer support agency and I asked her for three different things, none of which she knew how to find. Later I found the drop-in office hours (on their website, on their physical door, and on the brochure handed me) and arranged to go during their drop-in hours. Nope, they were closed. They talked to me from the parking lot and explained that they were shut down because of covid still. In July, 2021. I'm counting them as negative help.
• I had to schedule the genetic counselor's report (the thing I was most concerned about isn't something they have genes identified for).
• I had a really good - but long - meeting with an Occupational Therapist who worked with me on managing lymphedema.
• I finally found a support group that was helpful. (The FB group "Breast Cancer - I've got this!")
• I had a chat with a friend already going through it. She gave me some tips and tricks and onboarded me way better than the "befriender" who basically called to make sure I wasn't suicidal or something.
• I bought books and read them. My favorite was "Just Get Me Through This" by Deborah Cohen, but I also really like the college textbook-type book "Breast Cancer Treatment Handbook" by Kneece. I have the popular one by Susan Love, but haven't yet cracked it. The other two have been invaluable, though.
• An oncologist case manager from Blue Cross Blue Shield called and asked sweetly how I was doing. I recognized a frenemy. She gave me the claim form to submit for my lymphedema sleeve, though, that I measured for myself and ordered online myself.
• I've got a high deductible health insurance plan. Basically, I've just been paying every bill that is presented to me. At some point I'll have to figure out if I've started to overpay. But for now, I've just taken a draw on a line of credit to make sure there's cash on hand so I don't have to watch too closely.

Still to come:

• I need to get lined up with lymphatic massage.
• I need to find a therapist.
• I've been unable to get hooked in with any wig stores or prosthetics so I've just been buying my own best guesses online from Etsy and Amazon.
• At some point I might need to check in and make sure my husband's needs are being met.
• I've canceled and rescheduled so many client meetings that I might have to start explaining soon how come I spent most of the month of June being a professional patient instead of doing my job.
• While writing this post I got a phone call from a financial coordinator who told me that BC/BS has not only NOT yet approved the chemo, but also is disallowing the neulasta autoinjector pump because there's a cheaper thing you can do if you just travel back to the hospital 24 hours later for a shot.
• I may decide to change health insurance, but I'm feeling a bit vindictive towards BC/BS and am happy to run up their bill at this point.
• I'm going to have to check out what sorts of sick leave and/or disability pay is available. So far the mastectomy recovery has mostly come during my planned vacation time. I had to take a fewer than five days off sick. But I'm facing five more months of chemo and another month of radiation. Since I can sit at work and be a little bit flexible about my hours, I may be able to work through this pretty close to full-time, though, other than the hours I'm spending traveling to and from the hospital.

This gets me through the onramping stage and the surgery stage and to the start of the chemo stage. After that comes radiation. I've got roughly 50 more visits to the hospital in my future. Meanwhile, I'm also working full-time and running a business and trying to keep a schedule. It's infuriating. It's stunning how few people are there to help you, and how little of the big picture they have. If I didn't have an executive assistant handy to do the scheduling and fight the insurance company, I would NOT be able to fit in a job. This is a FUCKING FULL TIME thing, onramping into breast cancer.

I just want to be very clear here: BC/BS is more evil than the cancer, as the cancer is without a soul or any agenda other than just being a weed taking root. BC/BS is fucking up my life on purpose.