Two down, one to go and other catch up bits

On April 14, I shared that my treatment plan might change based on these—I’ve got answer to two of them and so far, no change.

• If the MRI shows more cancer elsewhere, this plan will obviously change depending on where and how much is found. The MRI showed no cancer in my right breast. It did show a pleural effusion and I’ll be having chest x-rays this week to make sure nothing wonky is going on there. My surgeon isn’t concerned in the least and says this doesn’t require moving my surgery date. I will probably always be nervous about something that's potentially linked to melanoma so more to come once I get the radiologist's report.
• If the genetic testing shows I have the breast cancer gene, then I’ll have a double mastectomy. I’m all clear on the gene front so that’s good news for me and for my children.
• If the path report post-op comes back with cancer showing then I’ll be looking at chemo. Of course, no update here since the surgery isn’t until May 6.

And if you have any urge to call this a battle, well just don’t. A battle implies winning and losing and I especially dislike when I hear “Oh she lost her battle with cancer.” No, no she didn’t. She died from a freaking disease.

Also, no pink for me during this disease treatment. I love the color pink, it’s one of my favorites and I look good in it. But it’s such a breast cancer cliché and I don’t want to end up being “that breast cancer woman.” I also love the color blue and I’ve decided that’s my go to color for all of this.

In my Sunday school class this morning in a very strange coincidence, a woman who’s part of the fabric for faith group mentioned that she didn’t think the clergy realized that the prayer quilts this group makes are available and she wondered how to make that more known. The woman next to me, who knew about my situation, turned to me and said, “You need one of those!” I thought so to, and long story not so long I have a prayer quilt. She asked what color I wanted and I immediately and without any consideration, said anything but pink. This is what she brought me:

The group prayed for me and I cried. I need to tell my friend Shima she can stop praying that I’m feeling my feelings—mission accomplished.

Getting ready

I'll need to work from home a bit in the next couple of months. While I had a set up for my work laptop, I dearly missed having a second monitor especially when I work on presentations or spreadsheets. But sometimes (a lot of times?) problems can be solved by throwing a little money at them.

I'm pleased to say my solution wasn't all that expensive and it's going to work really well, I think.

A PSA

Every time I see a new health care provider, I always have to fill out the endless forms—the ones where you list every surgery you’ve ever had (that section always has at most three dinky lines, I have to write super small) and of course any medication you take as well as any medication you’re allergic to.

Only I think all these years, I’ve been reading those forms wrong. I bet they say something about all known allergies. That came up last week at the first Care Bear appointment. I’d dutifully filled out all the forms and listed every medication I’m allergic to. And just randomly while talking with the surgeon’s nurse, she said ok and no nickel allergies, right.

Actually, that’s not true. I get a terrible reaction to nickel jewelry, a real burning pain bad enough that I have to immediately remove whatever it is. I learned this the hard way after I got my ears pierced; the earrings a junior high school girl can afford from money earned by babysitting are the cheap ones, the ones with nickel. I learned really quickly that I couldn't wear anything with nickel in it.

The nurse asked me if I ever had any weeping sores from the nickel and I said that I couldn't have left those earrings in long enough for that to happen. It burned way too much and too quickly to leave them in more than 10 minutes.

Turns out, for a lumpectomy, you’d normally have a little thing called a reflector inserted much the same way as the biopsy was done, local anesthesia and then somehow placed in there using a needle of some kind. You can’t see it or feel it but the surgeon uses ultrasound to find that reflector and the titanium marker that's already in there to get right to the correct spot. Only the reflector contains nickel, and I'm allergic to nickel.

For the lumpectomy, there’s another older procedure, one that's nickel free. With this procedure, I'll still have that local anesthetic, and then a wire inserted that same morning as the surgery. The nurse assured me that they do secure it with gauze and stuff, but I'll still be hanging out with this wire sticking out until the surgery. The surgeon will use the wire and the titanium marker I mentioned to get to the right spot and remove what needs to be removed.

But I have to say it’s never ever occurred to me to mention nickel as something I’m allergic to. Ever. So note to self, list everything.

An MRI of a different sort

Yesterday, I had what I called a super-duper fancy pants MRI. This was different from any I’ve had before (and I’ve had several) because it was face down with my breasts sort of hanging down in two openings.

I was extremely anxious about this MRI, in a way I haven’t been for previous ones. I realized it was because of the face-down position—that provoked a huge fear response in me. So when the Care Bear team mentioned a sedative was an option if I were claustrophobic, I said yes. Now, I’m not claustrophobic but honestly that fear response was pretty intense.

As directed, I took a dose an hour before my scheduled time. Once we got there—since I’d taken the sedative, Kent had to take me there—I learned they were running an hour behind. I was thankful they’d prescribed two doses and asked that they give me a heads up on when to take it so I’d be covered.

I was a little surprised that they got me back to the changing area immediately, had me change and then started the IV so soon (this was a contrast MRI). I sat there with Kent for a good 90 minutes just hanging out in my fashionable gowns (I wore two for warmth). I spent the time reading and texting Ben--sent him this picture to show him his fashionable mom.

The poor woman ahead of me had terrible veins and it took something like four or five tries to get her IV going. I was so grateful that while I’m terrified of needles, usually the IV goes in on the first try. As promised, they did let me know about 30 minutes before when they thought they’d get me into the MRI to go ahead and take the second dose.

The set up reminded me a little bit of a massage table because it had one of those head rests with the open spot for your face. Of course, no massage room would ever be that cold or loud!

They took a series of scans, then injected the dye for the next series. I wondered, though, how the dye gets to the other side? My IV was in my right arm and I could feel the dye moving up my arm (not painful, just a little chilly). But how does it get to the left side?

Anyway, about 45 minutes later, we were done, I got changed and we headed home. Between the sedative and the anxiety, I was beat and in bed with the lights off by 7:30.

I should get the results in 24 to 48 hours and then we’ll see if my dense tissue is hiding anything else in there.

What does and does not scare me

What does scare me:

• Needles. All of them—I do best with blood draws, worst with IVs. No idea about some of the more unusual procedures that lie ahead of me.
• Not knowing what’s going on. I felt so much better last Friday as I started getting some answers. Truly, whatever the news was, just knowing made such a difference. As I continue to get more test results and the diagnosis gets refined or confirming, knowing will help. I am in control that way, and it’s a very healthy thing.
• Melanoma. Remember, I’ve been diagnosed now with two primary types of cancer. Melanoma scares the shit out of me. It’s silent, it moves quickly and if it’s not caught early, you’re toast. The dying part doesn’t bother me but dying the way my college mentor did (he too had melanoma and it recurred in his brain) does scare me. It was just an awful, awful death.

What does not scare me:

• Dying. I’d rather not go in excruciating pain but dying itself holds no fear for me. Not sure if that’s true for everyone who attempted suicide as I did but take me at my word: death isn’t the scary thing here.
• This specific cancer. Oh it’s real and I have it but this kind doesn’t strike fear in me. Not like melanoma does.

What makes me sad/mad:
I spent months healing, recovering and rehabbing from my fractured pelvis last year. Now I’m looking at probably a couple of months without being able to work out and that frustrates the ever-loving snot out of me. I like working out, I like being strong, I like running on so many levels and once again I won’t have that outlet.

Finally, I've disclosed to my work peers and my team. One of my peers left me a small gift yesterday at work, she said she was adding to my Care Bear team. I posted it as my profile picture on Facebook yesterday and it's been really nice to see those who know about this cancer and what I'm calling the care team click a heart.

All we know

Here’s what we learned Friday at the multi-disciplinary clinic with the care team (I am calling them the Care Bear team).

I have stage 1A breast cancer that’s hormone positive. This is the most common kind of breast cancer, about 80% of all breast cancer patients have this kind. Mine is both in situ (non-invasive—it’s in the duct) and invasive (outside the duct). It’s also small.

Because I have very dense breast tissue (this is not news, I've been told that for years), I need a special kind of MRI to check for any other cancer spots. They’ll check both sides to be sure. That MRI is next Wednesday afternoon.

I’ve also opted for genetic testing both for the breast cancer gene and for additional markers. Those results will take a couple of weeks.

I will have surgery (a lumpectomy) and sentinel lymph mode removal on Monday, May 6. The sentinel lymph node or nodes are the ones that drain that breast. So I’ll have two incision points: one on the breast and one in the arm pit. This is outpatient surgery under general anesthesia, and I’ll be home that night.

I’ll get the pathology report from that surgery in three to five days. If everything comes back all clear, no stray cancer cells, then I move to radiation. Radiation won’t start until 21 days after surgery and will be five days a week for about a month. After that I’ll be on estrogen destroying drugs (don’t know which one yet, that’s TBD) for five years.

What might change this plan:

• If the MRI shows more cancer elsewhere, this plan will obviously change depending on where and how much is found. 
• If the genetic testing shows I have the breast cancer gene, then I’ll have a double mastectomy. 
• If the path report post-op comes back with cancer showing then I’ll be looking at chemo.

All in all, this is a pretty good scenario 😊

March 29 to April 12

I get an annual mammogram every March—I never make an appointment; I just go when my work calendar is less busy and get there first thing for the walk-in clinic. I’ve always been told I have dense tissue, and in the last five or so years, they always ask if I want a 3D mammogram (extra charge) or a 2D (free under my insurance). I’ve always opted the 2D and figured if something looked wonky, they’d call me back and we’d go from there.

This year, sometime in that last week of March, I read an article that said the FDA had changed their recommendation for women with dense breast tissue and now recommend 3D mammograms, rather than 2D. With that in mind, when I went for my annual check on Friday, March 29 and they asked if I wanted a 3D mammogram for $30, for the first time ever I said yes.

Monday morning (April 1), I got a call saying that I needed a diagnostic mammogram, that the radiologist had seen something. My work calendar that week was insane except for that afternoon, so I asked if they had any openings that same day and incredibly, they did (very unusual).

That afternoon, I got the diagnostic mammogram, and then an ultrasound. The radiologist didn’t see anything alarming on the mammogram but found a suspicious lump with the ultrasound. She told me I would need that biopsy I mentioned in my last blog post.

In another incredible fluke, I was able to get the biopsy done that Friday (April 5), just one week after the first mammogram. The radiologist told me the results would take three to five days so I figured I would know in a week.

But Tuesday morning (April 9), she called with the results: breast cancer. She answered all my questions and said a nurse navigator would be calling me to set up the next series of appointments.

Sure enough later that morning I got a call and in yet another freakishly fortunate event, I got an appointment with the multi-care disciplinary team that Friday (yesterday, April 12) at 1 PM.

In two weeks, I went from a regular annual test to a cancer diagnosis and a care team. To say my head is spinning is an understatement. I’ll share all my news from yesterday’s appointments in the next post, just know it’s not the worst scenario. It’s not lovely but it’s not ultra grim.

Out of runway, alas

I had serious plans to be able to run the Running with the Cows half marathon on May 11. You might remember I ran that one as the third of three half marathons for the Heartland 39.3 Challenge last year. That’s also when my pelvis was cracking, and it was a hard, hard race for me. Despite that, I managed to place second in my age group and I thought perhaps I could do even better this year with a healed pelvis.

But the amount of snow and ice we got this year greatly reduced my mileage and I just haven’t been able to build my mileage base enough. I reliably run four miles at a time, about three to four days a week. But I haven't been able to get in some proper longer runs (eight or more). Sure, I could do a run/walk but that's (a) not my style and (b) not my goal.

To add insult to injury, I also had to have a breast biopsy last Friday (this kind), which has also now interfered with running. There was no way for me to run any sort of longer distance this weekend, not with a hole in my breast.

And I should know by the end of the week if anything more serious is going on.