Not today, cancer

Today is the second anniversary of my breast cancer diagnosis, which is also the second cancer I've been diagnosed with. I remember dates like these, not to live in a mud puddle or focus on bad things but as a way to honor the trauma I've come through, and just as importantly to normalize having things like this happen.

There's a real tendency not to talk about what it's like to get cancer, or break a bone, or live through a flood, or survive childhood sexual abuse, or menopause or (fill in the blank). I find it comforting when I hear from someone else who's walked the path I'm on and so I do the same for others.

Breast cancer was different from the first cancer diagnosis, and not just because it involved more treatment. There was also the whole OMG BREAST CANCER response from so many people, and the huge disparity in the amount of support available compared to melanoma (which was . . . basically nothing).

Breast cancer also brought more trauma associated with my childhood abuse, which OK that makes a weird sort of sense since some nasty things were done to my breast. Going back to therapy, doing the entire Cognitive Process Therapy was hard so if you are there now, please know it's not your imagination. That stuff is hard.

And the lingering effects of radiation on my running, and the way my bones are just shit now, that's been hard too. After doing all the so-called right things in terms of food and weight bearing exercise, to have my bones just break was a real blow. So if you're there too, you're not alone. 

Today is a run day, and as I've done the last couple of weeks, I did not look at my running watch to see what my heart was doing or what my pace was. I just ran by how I felt. Frankly I didn't think today's run would be all that great since a cat woke me up at 2:30 this morning by massively throwing up on the bed. So I had to get up and deal with that and then try to get a bit more sleep.

But this run felt good and I'm getting more hopeful that my best running days aren't in the past. And that's especially meaningful today, on this second anniversary of my second cancer diagnosis.

Not sure what to do . . . any runners want to weigh in?

I'm still having issues with my heart rate while running. Last week, I got in just one so-called normal run on October 29 where my heart rate behaved. I tried two more times but ended up stopping almost immediately because of the spikes.

No heart issues w/ HIIT

Thing is, I signed up for a 10K this Saturday, and spent the money for VIP access. This race is held in a large park, and it's where the Great Plains 10K was in September. There were not nearly enough Porta Potties so I spent the money to get to the extra ones, plus a heated tent. So it would pain me greatly to lose the money without having had the fun of a race.

However, in addition to my heart rate spiking, now my blood pressure is doing wonky things. It's high for me: 148/72. I'm normally no more than 110 on the top number and in the low 60s for the bottom number. So this is definitely high.

The other oddity is that I've done HIIT this week with zero heart rate issues. I mean I'm going hard, very breathless and sweaty and my heart just clocks along in the 130s. I would suspect cadence lock for my heart rate while running only a week ago, I bit the bullet and got a chest heart rate monitor and it's showing the same spikes when I run.

The heart rate spikes may still be from tamoxifen. I'm four weeks out and it's one that hangs around. My blood pressure may be due to Prolia as this is a known side effect (see page two of this PDF).

If you're a runner and you were me, what would you do?

• Bail on the race (would be my first ever did not start)?
• Try and know I might have to stop (which would also be my first ever did not finish)? 

The other factor is I know this course now, since I ran it in September. We'll have two water stations and no way to do anything other than walk or trot back to the starting area. The course is a big loop and easily 2/3 of it is trail so it's not like anyone can fetch someone who's in trouble.

Kent's running the 5K there, so I'll be there anyway. I want to run this race, but I want to run it competitively and in a way that doesn't harm me. Decisions, decision.

About those side effects

I’m on week four of tamoxifen (with another four years, 48 weeks in front of me if taken as planned). I’m taking just a quarter dose of what’s normally prescribed, and that’s on purpose. I haven’t had good experiences with drugs that interfere with hormones and hoped that a slow ramp up to the full 20 mg would mitigate any side effects.

Unfortunately that’s not what’s going on. This whole thing is further complicated by me starting Prolia 10 days before starting tamoxifen so teasing apart what’s causing what is a little difficult. Both drugs can cause muscle pain, joint pain and bone pain, all of which I have. But those didn’t start until about day 10 of the tamoxifen which is also when I noticed my heart rate getting too high while running (another tamoxifen side effect although apparently not very common) and also started having serious hot flashes.

I didn’t have hot flashes in menopause, I had more what I’d call warm flashes. But these are much more intense—sweat rolls down my face, I’ve soaked my clothes. They’re pretty intense.

But it’s the heart rate issue that concerns me the most because it’s affecting my runs. It’s not safe for me to run at my maximum heart rate for very long (it’s not good for anyone, not just me) and it’s been spiking that high a lot. Sunday’s “run” was mostly walking because my heart rate wouldn’t stay down.

I run because I love it, sure. But running also plays an important role in reducing my risk of this breast cancer recurring.  According to this study (summarized in this article), physical activity can reduce the risk of death from breast cancer by about 40%.

But what’s my risk?

I used this online calculator to run my results two different ways. The pathology report from my biopsy said that lymphovascular invasion was present, and the path report from my lumpectomy said it was absent.

Including the LVI, I have an 18% risk of recurrence in the next 15 years. When I reran the test using no LVI present, my risk is 11%.

Here are two more results using a different calculator, one with me taking tamoxifen and one without.

Taking tamoxifen

No tamoxifen

Let’s go with the worst-case scenario. If I have an 18% risk of death specific to breast cancer in the next 15 years, and I continue working out the way I normally do then my risk drops to 10.2%. Sure I could cut that 18% risk by 1/3 by taking tamoxifen but at this rate, I would lose the benefit from exercise.

As I told Kent, I don’t have a death wish, I have a life fully lived wish. I’ve scouted around the forums that have been so helpful to me and magnesium glycinate has helped others with the same sorts of side effects. I got some last night and started taking it. I’ll give the tamoxifen + magnesium at least a week. If things aren’t better, I’ll stop the tamoxifen and continue the magnesium by itself for a couple of weeks and then try again with the tamoxifen.

The Heartland 30K Challenge

Or how I did a little scope creep and ran three 10K races instead of just one.

Backstory:

• Was diagnosed with melanoma in August, 2017. Got that removed and dealt with the mental side of having a really nasty cancer, mostly by running.
• Broke my pelvis May 2018 (actually ran two races on it because I thought it was a groin strain—nope, I fractured it and was on crutches for nearly 10 weeks). I was dx’d with osteopenia then. I started slowly training last fall, swam first then ditched the pool and did a walk/trot combo for a bit. Still had a lot of pain but turns out the bone I broke is notorious for that and I’ll probably always have that pain.
• OK so by March this year, I was getting my base built—still nowhere near the 30-35 miles a week I was running in 2018 but working on it. Then I got dx’d with breast cancer April 9.

After the Plaza 10K

Condense all this down: surgery in May, radiation the entire month of June (I ran all the way through radiation treatments, slowly but by golly I ran). And I signed up for the Plaza 10K race as my first race after all of that.

I’ll be honest, the race didn’t go as well as I hoped. I trained well, worked hard but when my radiology oncologist said recovery from radiation takes four to six months, she wasn’t lying. My heart rate wouldn’t stay down, the rain wasn’t pleasant and long story short, I ran 1 hour, 42 seconds.

1st in my age group

The second 10K was the following Sunday (the Great Plains 10K) and the weather was much different, cooler and sunny at first but then . . . boy oh boy the temps rose like crazy. I also didn’t realize this 10K was mostly on a trail, and while the trail was in good condition, I don’t ever run on trails. I knew I hadn’t run my best race, not even close, but since I had to wait for my husband to finish, I figured I might as well get my time. I was gobsmacked when the lady said oh you came in first for your age group.

Say WHAT?! That’s the first time ever for me—I sort of felt like a fraud because my time was slower than the week before (1:01:04) and yet somehow that was first in my age group.

This photo of Kent
really shows the rain.

Then last Sunday, I ran the third 10K (Dot to Dot). We had terrible thunderstorms forecast that morning, so I wasn’t even sure the race would happen. But it did . . . in absolute torrential rain. I’ve never run in rain like that, not ever. But it wasn’t hot, and the course wasn’t on a trail and I finally, finally broke one hour: 58:53. Still not my PR but holy cow I was ecstatic about that finish AND I won my age group again!

To top it all off, the final results for the Heartland 30K Challenge were posted on Thursday and I won my age group for the whole thing.

What’s next for me? I need to build my stamina back up and continue building my base. I’m toying with the idea of running the Kansas City Marathon’s 10K race on October 19, but not entirely positive that’s a good idea. It's an incredibly hilly race, plus I’ve just started on two new drugs, one for the cancer and one for my bones, so I need to make sure those play nice with me.

Here's how rainy it was for the Dot to Dot 10K:

Stress is

Seeing this in my email today.

This claim is for the biopsy on April 5. For whatever reason, St. Luke's forgot to get this pre-authorized or approved or whatever hoops they need to jump through. The bill is for over $16K.

I'm mostly confident this will be resolved in my favor but boy, talk about a gut clench. 

Much to my surprise

The skin on my left breast is a little flushed, and my breast is a little swollen and tender. Also that fourth tattoo stung for hours which I totally did not expect.

While none of this is tremendously uncomfortable (think annoying instead of PAIN), I figured I'd have days, maybe weeks before I noticed anything.

Edited to add that I get two zaps. The first day had a lot of practice zaps.

One down, 19 to go

This is from one of my dearest
lifelong friends. I took her
with me today.

Since today was the first radiation treatment, it was also the longest. The tech spent some time getting me acquainted with the order of operations so to speak. Going forward, most appointments will take far less time, although I will always see the radiology oncologist on Mondays.

But for today, I got the drill on what to do and what to expect. I got changed into a hospital gown; while I had to take off everything from the waist up, I kept my lower half clothed and my shoes on. I did take off my Garmin watch. I’m pretty sure radiation wouldn’t be beneficial to my watch.

I had three techs in the radiation room with me getting me and the machine ready.

First, we practiced that deep inspiration breathing, then they dragged the sheet I was lying on a tiny bit each way to get me just so on the table, then marked me up a bit more with markers and left the room. I think they do the extra marking because the tattoos are so very tiny—the marks they made are very easy to see. Then they did the radiation treatment. I think there were a total of six zaps. I had to hold my breath, and on a couple of them they told me to let out just a bit of air. Oh and at the end (yes, after that first radiation treatment), I got a fourth tattoo on my breast. The tech who gave it to me said it’s a centering measurement which cracked me up because it’s definitely not centered on anything.

After that, I had my blood pressure and pulse checked—I suspect those get checked after the treatment so if you were nervous about the radiation, you’d be over that part and wouldn't have artificially high blood pressure. That's also when I met with Dr. H, my radiology oncologist, and she had some interesting information for me.

Remember that pleural effusion I mentioned in my last blog post? Well she tracked down every film, CT and MRI of me, including one I’d forgotten about from 2005 and it turns out that I had two pleural effusions then! She suspects this is just what my body does. I wondered if that’s what’s behind the symptoms of reactive airway disorder I’ve had for years.

I’m curious to see what if any side effects I experience. I’m really hoping my skin does well, and that I don’t end up with the soul sucking fatigue so many experience.

Next steps

I look forward to a couple of months from now when I have something other than breast cancer on my mind. Or at least something else that’s top of mind, even if this remains an ongoing thread in my life.

Yesterday I met with the radiology oncologist (RO) for the consult. During that appointment, we talked through what’s happened so far and I let her know that I was probably not going to take the endocrine meds my medical oncologist recommended. I thought that decision might influence what she recommended for my radiation treatment, and it did. Originally she’d been leaning toward 16 treatments and now I’ll have 20.

Then she did what she called mapping. I was on a flat (hard!) table with a CT scanner but not a typical one (couldn’t tell you what the difference is just know that it’s different because the RO told me that). She and the nurse put stickers on various places on my chest, then circled my left breast with a thin, flexible wire. Finally the nurse drew on me with a Sharpie to line everything up—the room has lasers sort of like laser levels you’d use at home instead of a plumb line. That way, my body is lined up exactly as it needs to be every time.

Because the cancer is in my left breast, my heart will be exposed to radiation which can be a Very Bad Thing. So I’ll need to do what’s called deep inspiration breath hold. Basically, when you take a deep breath using your ribs and not going just from the belly, that moves your heart just a little bit out of the way of the radiation. You can read about cancer-associated heart disease here.

Of course, I’m a snowflake so this may not be something that helps me. Years ago, I was diagnosed with what sounded like a heart murmur, but an echocardiogram showed that my heart is close to the wall of my chest. When my heart beats sometimes there’s an echo that sounds a lot like a murmur. So my heart may be too close to the wall of my chest to be helped by holding my breath. I'll find out more next week.

Anyway, I had a couple of CT scans, breathing normally. Then I had a scan where I had to do that deep inspiration breathing, and I held my breath for the whole scan. Once that was done, the nurse came in and gave me three teeny tiny (hardly worthy of the name) tattoos. Basically, they are each one dot—left side even with my breast and under my arm, on my breast bone, and right side even with my breast and under my arm. I will have to remember to mention them to my dermatologist when I have my next post-melanoma scan.

I did think of one additional question for my RO after we left. I have a small pleural effusion on the left lung, which of course is the side that will get the radiation. So I’ve called and left a message to mention that and see how/if that impacts treatment. More to come . . .

Now the RO is building the model for my treatment, and I should get my appointments (I hope) by tomorrow since we’re aiming to start on Monday.

More encouraging news

I’m back from my two follow up appointments today with my oncologist and my surgeon. I took the whole day off work, mostly because the appointments were not back to back, nor were they at the same location.

My friend made this for me.

I have pretty much all good news—because of the kind of breast cancer I have, I already knew that chemo wasn’t on the table.  It’s just not a treatment that works on hormone receptor positive breast cancers (or HR+ if you want to abbreviate). Well, OK, it could have been if the cancer had metastasized, but it didn’t.

Instead, the normal treatment is surgery (either lumpectomy or mastectomy plus sentinel node surgery) --> radiation --> estrogen blocking drugs for five to 10 years.

Broadly speaking, there are two categories of drugs for the estrogen blocking. Here’s information about both kinds from the breastcancer.org site:

Selective estrogen-receptor response modulators (SERMs): The best-known SERM is tamoxifen. Tamoxifen acts like estrogen and attaches to the receptors on the breast cancer cells, taking the place of real estrogen. As a result, the cells don’t receive the signal to grow. Tamoxifen can be used to treat both pre- and postmenopausal women. Tamoxifen can reduce the risk of breast cancer coming back by 40% to 50%, and it’s the one my medical oncologist recommended.

(This part is from me) Keep in mind that as a stand-alone statistic, that reduction rate sounds fantastic, but you need to know what your personal recurrence rate might be. By all accounts, I’m in a low risk category, possibly less than 2% chance of recurrence over the next 10 years. Since this drug has some nasty side effects, and also has a risk of blood clots and liver disease, I don’t think it’s worth taking. I can live with a 2% chance.

Aromatase inhibitors reduce the amount of estrogen your body produces. Aromatase inhibitors are most commonly used to treat postmenopausal women but can be used to treat premenopausal women who are also taking medicine to shut down their ovaries. This medicine has fewer side effects but often causes bone loss and bone breakage.

Since I already have osteopenia (the step before osteoporosis) and I’ve already had a bone break, this isn’t the drug my medical oncologist recommended for me, and I agree.

To better assess my risk of recurrence, he’s ordered a MammaPrint test run on my tumor (boy that sounds so weird to say: my tumor. Actually I still have a hard time wrapping my head around me having another kind of cancer.). If I fall in the ultra-low risk category, then I absolutely won’t take the estrogen blocker. The juice just wouldn’t be worth the squeeze. If my risk is higher, then we’ll have to talk further about the options. 

My surgeon was also pleased with how I’m healing. I’m typically a fast healer and even though there's swelling he said it's really minimal compared to most. He said the recovery period is six to eight weeks, but I’m OK to work out as long as I don’t go swinging heavy kettle bells or anything.

Next week I see the radiology oncologist to get that process going. She’ll do some sort of mapping using a CT scan to get the locations established, and I’ll get a couple of tiny tattoos that mark where the machine needs to line up. I don’t know how long my radiation treatment will last but generally it’s three to seven weeks, five days a week. There’re some less than pleasant side effects but nothing horrible (although my surgeon did warn me today that my breast will swell from radiation—good to know!), and once that’s done, everything can start healing up.

Before I forget--how Monday went

I wasn’t sure about the order of operations—I just knew I had to be there at 7 at the surgical admissions and that I would have the wire inserted before surgery. Other than that, I didn’t know. Turns out, I got checked in and then sent to the breast center for the wire procedure. Both that and the IV insertion were my biggest fears; again, for me it’s all about the needles, not the post-op pain. While post-op pain hurts, it’s constant and I wasn’t awake when it was inflicted if that makes sense.

A friend gave me these &
I wore them on Monday

Anyway, we got to the breast center and I have to say everyone was beyond kind and gentle. When the technician learned how fearful I was of the wire insertion, she promised she would hold my hand—and she did. In fact, she had her hand on my leg as a reassurance even before the radiologist got started and that was just so comforting. At one point, I asked what her ink was on the inside of her upper arm. She has part of Proverbs 31 there and we talked about that. Then I asked about the music and that started a hilarious conversation about the evolution of music at the breast center. They’ve tried spa-like music (too many birds and frogs), country music (only the technicians were happy), some mellow music that ended up having quiet F-bombs in the lyrics so got nixed right away, and now they have some weird compilation of classical music (only it’s not classical, not really).

The wire itself was much longer than either Kent or I thought it would be. I guessed it would maybe stick out an inch but nope. It was more like half a foot, like a giant cat whisker, well past my body. The technician said they have three lengths of wire but were out of the smallest size. Then I had to have two mammograms to make sure the wire was in the right spot. That was weird and very uncomfortable, even though my breast was numb. Once those were finished, the technician sort of coiled up the wire and gently taped some gauze over it and down we went to surgery.

Once again, everyone was great, talked with me about anything and everything. The anesthesiologist made sure I had a patch for nausea (doesn’t everyone throw up with general anesthesia?) and told me because I have a lot of problems with nausea, he’d do something called tiva—total IV anesthesia, no gas. He said that method would help a lot and it did. The IV was as expected but then it was done and I could relax.

Kent got brought back, then my priest showed up and I was so glad to see her. She’s one of three at Saint Andrew’s and it meant so much to me that she came. She prayed for me and I must be turning into the biggest mush melon because I cried and cried. Kent cried too, it was just such a comforting thing for me and for him.

Then off I went. I remember the anesthesiologist injecting a sedative into my IV as they wheeled me away and I felt nicely mellow but could still help them get me on the OR table. Then she told me she was starting the tiva and that was it, lights out.

I did take a while to get alert enough to go home. I think I was in recovery by noon but didn’t leave for home until 2. But everyone was again so kind, checking on my nausea (which wasn’t bad), my pain (which was not pleasant), and getting me prepped to leave.

Once we got home, I slept for about three hours—long enough that Kent told me later he was getting worried. But I was fine, just very tired. I did end up throwing up but only once, which is a big improvement over most surgeries I’ve had.

So that’s the color commentary.

It aint pretty

If you’re my son, you might want to skip this blog post. It’s a little personal about things most kids don’t want to know about their mothers.

I took the bandages off this morning before my shower. To be honest, I wasn’t sure where my surgeon had made the two incisions he discussed with me. I don’t know what I expected but what I saw was not it at all.

First, I have two incisions in my armpit. I was not expecting two, and in fact everything I’ve read on the reputable sites all say one incision. These run parallel to each other and look to be a couple of inches long each. They are toward the front and now I know why my pecs hurt.

Second, and what’s really thrown me for a loop, the incision on my breast is on my nipple (it’s a semi-circle at the edge of my nipple). I was really not expecting that at all. I thought it would be more where the core needle biopsy was done, and where the wire was inserted Monday before surgery. Both of those were done near the back of the breast on the armpit side. But that lumpectomy incision is in the nipple area right on the edge.

My breast is clearly swollen on the armpit side and at least right now, it looks like I have a divot slightly on the top and to the left if you were looking down at your own chest.

So today I’m sad. Yes, I know this surgery was the right thing to do but I’m sad about what I saw and how my breast looks.

Edited to add that I was wrong about two incisions in my armpit. The surgeon used a dark purple pen to make a line that runs parallel to the actual incision. But the incision itself is also purply-red (got some bruising going on) so it looked like two incisions. 

I have scars

When I was 19 and in the Army, I had my appendix removed. I ended up with a 7-inch vertical incision about two inches to the right of my belly button and starting a couple of inches above that. Turned out, my appendix was not in the usual spot. Instead it was attached length-wise on the small intestine and my intestine got compromised.

But I didn’t know that, lying there in that hospital ward. All I knew was that I was in a lot of pain. In 1979, you had to have a shot for any pain relief, and I am beyond scared of needles. So I lay there with an NG tube up my nose (which was also really unpleasant, and made me puke—not what you want to do with a long abdominal incision like mine) and hurt.

At Jordan and Amanda's wedding
You can't really see the scar here

If I remember correctly, the medic changed the bandages on probably the second full day I was in the hospital. That was the first time I saw the incision, how long and ugly it was. I cried, really cried, over how ugly it looked. I was crushed that I was going to have such a big, ugly scar.

And it was an ugly scar. It looked like a thick red crooked worm on my stomach for the longest time. I think it finally faded in my late 20s, but it’s still thick and crooked 30 years later (wow, I just realized it was 30 years ago pretty much right now).

I went on to have another six major abdominal surgeries; most were on the same site as my c-section with the exception of the five holes punched in for the laparoscopic surgery I had in 2006. With that one, I joked that I now had the Big Dipper on my belly.

So my belly isn’t pretty. My muscles are strong, I’ve worked the snot out of my abs mostly because otherwise I thought my guts might end up on the floor. But my belly isn’t so attractive.

Then in 2017, I had that melanoma removed on my back. I was self-conscious about that scar too, especially at my older son’s wedding in March 2018. My new daughter-in-law has also had melanoma, and she showed me her scars and told me the dress she actually found for me was gorgeous and I should wear it. She was right, and I did wear it.

This past Saturday night, I wore a different dress to the Juvenile Diabetes Dream Gala, and that same scar is visible in the dress. I don’t care though. It’s a mark of survival.

I hope that I can have that attitude with however my body looks after today.

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.