Interminable waiting for next steps

You would think that once you’re diagnosed with cancer they do something right away. I mean you’re walking around with something deadly inside of you. Terrified it’s going to grow, that it’s going to spread. Every second you’re afraid that you’re that much closer to death. But it takes a very long time for the next steps.

At the time I got the results from my biopsy it had been just over a week since I had found the lump. I wanted something to be done immediately. When I got back from North Carolina, I hadn’t heard anything from the doctor’s office. I thought they would want to see me right away but nothing. Maybe they’d forgotten about it? Maybe I was supposed to call them first? As I mentioned before, I worry a lot, so I ended up calling them Tuesday morning. They said they were just about to call me to make my appointment. The earliest they had was for Thursday – two weeks and a day since I’d found the lump.  I was going to meet with the Director of the MSU Breast Clinic -the same surgical oncologist I’d met with the first time.

As I waited anxiously for the appointment, I tried to live my life normally. I mean, I still had to work. I still had to be someone’s wife and mom to 5.

When my appointment finally came, I expected to hear that we’re going to do surgery tomorrow, we’re going to start some treatment right away, but what I heard was just confirmation that I had cancer. He told me specifically it was invasive lobular carcinoma, and re-iterated that my lymph node biopsy was negative. I knew already that meant Stage 2. That was good. Not as good as Stage 1, but still very curable. He also confirmed that my cancer was estrogen receptor positive (ER+) and mildly progesterone receptor positive (PR+). This means that the cancer cells contain receptors for these hormones and a more rapid growth is spurred in the presence of these hormones. This partly explains how my cancer grew so quickly – I had been taking hormone pills.

By this point, I already knew a lot about my cancer. I mean, I have a Ph.D., I’d spent hours already reading every medical website, every research journal article I could find on breast cancer, prognosis, treatments, everything. I knew from the National Cancer Institute’s SEER database that Stage 2 meant I had a 93% 5-year survival rate (remember that all statistics are simply measures at a point in time, and there are always outliers). I knew that depending on the size of the lump, either a lumpectomy (surgical removal of the lump) or mastectomy (full breast removal) was recommended. The best survival rates (and lowest recurrence rates) were attained by following surgery up with radiation therapy. Then, because my cancer was ER+, I’d get some hormone therapy for at least 5 years after that, probably in the form of Tamoxifen, which blocks the estrogen receptors on the cancer cells.

I knew all these things already. What I really wanted to know was – when would we begin these treatments on me? But the doctor explained that first I would be taking a class on breast cancer, to explain things. Then I would meet with each member of the cancer team – him as the surgical oncologist, a medical oncologist (chemo doctor), and a radiation oncologist – they would look at my test results and examine me. Then they would meet with each other and go over all my tests together to determine the best course of action.

The class and meetings took place the next morning – 2 weeks and 2 days after I’d first discovered the lump. For the last part of the appointment, the medical oncologist came to speak to me to explain the proposed treatment plan. But before we finalized the treatment plan, they wanted me to do two more tests. All I could think was – how much longer is this going to take before I can begin some sort of treatment?

First, they suggested a genetics test for mutations in the BRCA1 and BRCA2 genes. These genes are responsible for creating proteins that are tumor suppressors. All cancer starts as a damaged cell. Normally your body can easily repair the cell, and no harm done. But when you have one of these mutations, your body cannot as easily repair damaged cells. These damaged cells can then proliferate rapidly and in an uncontrolled way, i.e. cancer. If I had a mutation in either of these genes, I had a greater chance of recurrence and a 50% chance of passing it to my children. A double mastectomy would be the likely suggested treatment as a preventative measure.

Second, they wanted me to have an MRI. It would examine my entire chest area – both breasts, armpits and as deep as my chest wall. They wanted to make certain they didn’t find any other suspicious areas, and to more clearly determine the size and shape of the cancer. When they had first examined me, the ultrasound showed two lumps, each less than 2 cm in size. But they could not tell for sure if there was a connection between them, i.e. one large irregularly shaped lump, or if they truly were two separate lumps. The difference doesn’t seem significant, but I’d read enough to know that a larger size at diagnosis meant a higher risk of recurrence, and a lower rate of long-term survival. Again, I felt a pit in my stomach as I thought about what that could mean for me. And for my family.

For now, the proposed plan was: Once they received the results of the MRI, they expected to do neoadjuvant chemotherapy (chemo prior to surgery to try to shrink the lump as much as possible). After that, the actual surgery (finally), radiation, and  then hormone therapy. Pretty much what I’d expected from my research into it. What I hadn’t expected was how long it would take to get started.  They immediately scheduled my genetics test and MRI. Those would be the following Tuesday and Wednesday. Then it would be a full week before I could get in to see the medical oncologist to go over the results and finalize the treatment plan.

Four weeks exactly since I’d first found the lump. A very long four weeks.

No karate test for me

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My youngest, Andy, and I a few tests ago. I won a “Best of the Test” medal.

Our next karate test was scheduled for last week. At first I thought I would still take my test, maybe my last one for a long while, but I decided not to after all. It’s the first one I’ve missed since I started karate two years ago.

For those who don’t know, you take classes several times a week, then test once every 3 months for your next belt level. The test includes both the physical part where you do karate forms, actions, sparring, etc. and a verbal test where you are questioned on various parts of Tang Soo Do, including Korean terminology.

Our family entered the world of karate when my oldest son, then 6, asked to take karate and one by one over the last few years, all seven of us eventually joined in. I would have never thought this, but it really draws you in. The ideas that are iterated in Tang Soo Do are respect, self-accountability, resilience, honesty and truth, being just, and physical and mental fitness. When we first started, we felt a little out of place, but before long we felt at home. We were so welcomed in the docheng, which can be difficult in a small town like this where everyone else seems to have been born and raised here and quite often are inter-related. Although we’ve made many good friends in this town over the years, we have always felt like the outsiders. We’ve never felt as if we have belonged as much as when we are with our karate family.

Belt promotion in December, 2013.

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I’m currently a red belt, which is the last color before black belt, so I am at an advanced level. But, there are 8 level tests on your red belt (they show on your belt as stripes as you earn each one), so I have over 2 more years to test for black belt.

I just didn’t feel up to testing. I’d been having great anxiety, not sleeping well, and of course hormone issues after stopping my hormone pills. That caused worse anxiety which led to even less sleep, and stomach issues. It’s a bit of a vicious cycle.

All I could think was – I have cancer, but I can’t start the fight against that yet. I couldn’t even remember my Korean terminology. Every time I go to class I struggle with that, but it was even worse with my lack of sleep and my worries. I didn’t want to stress about trying to study and whether I would even pass. If not, I’d need to retest. And when you get to the advanced levels, you have to spar as part of the test. You wear headgear, and hand and feet padding, but even so, you get a bit bruised if  “light touch” accidentally becomes a hard hit (which happens a lot). What if I got hit in the breast? What if it broke the lump apart and the chunks of loose cancer spread elsewhere in my body? I was just too mentally worn out to even consider it.

I felt a sense of relief when Tim and the kids registered for the test without me. At the same time, I wondered if this was just the first in a long line of times that I would feel left out.

The first post…

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When they tell you, the first thought is of your beautiful children and your husband. What would life be like for them if I was gone? It made me incredibly sad to imagine them not having their mommy in their life, or picturing my husband alone in our bed.

Would they be okay financially?

My baby is 6 – would he have enough memories of me to carry him through to his adult life? What about all the important things- the boyfriends and the girlfriends, the school awards, the boo-boo kissing? Would I be here for my 9 year old’s black belt test? When each of them get married? Would I ever hold a grandchild?

Everyone asked- did they find it in your mammogram? The answer- no. I was changing after karate and as my arm brushed along my breast I felt a hardness there at the surface. It’d been at least 6 months since I’d done a self-breast exam. I did one immediately and it was not good. A giant lump about the size of the palm of my hand. I stood alone in the kitchen with my heart pounding, whispering “Oh God, no!” until my husband came in and I told him. He was calm on the surface, but I know him well enough to know he was panicked. But he hugged me and said that whatever happened, we would be okay.

It was one week shy of the date for my annual mammogram. I have had regular mammos for several years now, and never had anything unusual. What scared me the most was how big it was before I noticed it. Had I been doing monthly self breast exams- I might have discovered it earlier (take note ladies!) but I suspected that it had grown very large, very fast. That is what kept me up that first night.

God bless my local doctor – when I called first thing in the morning, they said they would fit me in for an appointment.  I got the physical exam, an ultrasound, and a mammogram. They thought it was possible then that it was what is called a fibroadenoma. Something that happens fairly commonly, and grows and shrinks with your hormone levels. Relief! It explained why it was suddenly so large. I have had hormone issues since my last childbirth at age 42. But my doctor’s office is very pro-active  and aggressive when it comes to things like this so they referred me to the MSU Breast Clinic.

But I was no longer panicked because I had a probable answer. God didn’t call me to have all these children only to take me away from them, right? The chance of cancer was remote enough. Only about 10% of lumps end up being cancerous according to one website.

The one thing that Tim and I have always said is “we are lucky”. So I hung on to that.

When MSU Breast Clinic called, they told me the earliest they could get me in was May 26th, weeks away. Even though I was pretty certain it would turn out negative, I asked if he could let me know if they had any cancellations in the meantime. I hoped that maybe I could get the biopsy and get the good news before we went on our trip to North Carolina for our nephew’s wedding.

I imagined talking to our family at the wedding: guess what I found, but thank God it was nothing.

My friend at work insisted that I needed to call the Breast Clinic back and make them fit me in as soon as possible. Even though I wanted to have this little scare over with quickly, my thought was that the people with real issues should be the ones they fit in first. I just needed a verification that it was nothing, other people, with real issues – they needed to be seen more than me. On my drive home from work that evening, they called me back- they had a cancellation and could fit me in on Tuesday. Four days away. Then we could leave on our trip Thursday feeling relieved.

I had to bring my last few years worth of mammograms and the ultrasound results to the appointment. I had put in a request at my doctor’s office, knowing that my last mammogram had just been sent off for a further evaluation by a radiologist, but they were certain they would have them back by Monday. By Monday afternoon, there was still no sign of them. I explained (in a slightly panicky voice) that the MSU clinic had said if I didn’t have all my records with me, they would cancel the appointment, then I wouldn’t get in for weeks. The ladies at my doctor’s office were so incredibly helpful and kind. They said they would call me as soon as they received them.

I worked from home Tuesday morning in hopes that the records would be there before I had to leave for Lansing. By 10:00 am, there were still no records. I did NOT want to miss my appointment, so I decided I would go even without the records and beg them to examine me anyway. I stopped by the doctor’s office on my way in, with minutes to spare, and they had just received the last mammogram back in the morning delivery. I jumped in my car, records secured, and headed off to my appointment so they could tell me it was nothing, and I could go back to being normal.

I went into the appointment feeling out of place. I didn’t belong there. The breast cancer specialist I was seeing was located in a surgical office. I certainly didn’t need surgery, but hey, if he was the Director of the Breast Clinic, of course I wanted to see the best.

I don’t want to say they looked grim after examining my records and me, but it was clear they were serious. He told me he wanted to call his colleague in the Radiology Department and see if he could see me soon. The radiologist wanted me to come right away. It was after 4:00 pm by then. This was my first stomach-dropping moment since I had found the lump. If they thought it was nothing, they’d just wait until they could fit me in, wouldn’t they?

I was amazed at all they could do there. They have a mammogram machine, an ultrasound machine, and a room with a t.v. so they can sit and consult with a patient and watch the ultrasound video right there as they spoke to them. Would we review my ultrasound here and would they show me what they’d found?

The radiologist did another ultrasound, looking closely at the lump, then moved to my armpit. He spent an inordinate amount of time there, and my heart started pounding. Then he told me he would do the biopsy first thing in the morning. He said there was something that seemed very obviously a cyst that he would do first. If it drained, they would test the fluid that was extracted, but he was pretty certain it would be fine. Then there were two other lumps within my breast that he would biopsy. And a lymph node in my armpit that looked bigger than normal that he wanted to check as well. My mind was spinning. The look on their faces as they spoke with me was … sympathetic. That couldn’t be good. He said the lumps were very suspicious. He said he wasn’t as concerned about the lymph node but just thought he might as well check it while he was in there. I went home deflated. But maybe he was wrong.

I spent the night tossing and turning and praying.

The biopsy went well, and was actually interesting to watch (I’m a scientist). He gave me some local anesthetic shots, then inserted a long needle into the lump. He used an ultrasound to guide where to go. He did this in each lump, and the lymph node. Only once did it hurt a little bit, although the snapping of the end of the needle as it reached out and grabbed the tissue was disconcerting.

When he was done, I asked if there was any chance that it was not cancer. I held my breath as he answered with “To be blunt, I’d be surprised if the lumps in your breast weren’t cancer. I’d be surprised if the lymph node was cancer.”

My stomach rolled. Cancer. Me. I was on that precipice. On the edge of being “me” or being “one of them”. I thought – Oh God, please let me still be “me”. At work afterward, I kept thinking about what our lives would be like. Cancer. Maybe he was wrong. I really wanted him to be surprised by being wrong.

I sent a lot of prayers upwards over the next day of waiting on the biopsy results – maybe there’d been a mistake and the biopsy would show that I didn’t really have cancer after all. He had said there would be results the next day, unless they needed to do further investigation by staining. I waited all day for the phone call. Nothing until after 5 pm. The answer was that they weren’t done yet. They needed to do more stains. I knew then what that meant. They used staining to determine the type of cells. It meant cancer. I had already read a ton of research and medical articles. I knew.

My breast was horribly bruised. To be honest, I have always bruised easily, and being a tomboy, I have always been a bit rough and tumble anyway. It hurt a little, but acetaminophen helped some. I would have preferred ibuprofen, but I was determined not to take that in case they wanted to do surgery right away. I didn’t want any delays. You know IF somehow this nightmare was real.

(Forewarning- this paragraph may be T.M.I. for some people. Read at your own risk.) In the meantime, I had my first period in over 5 years. Being a female during this time of the month sucks. Headaches, severe cramps, stomach issue, and the ever present fear of “leaking”. I had been on hormone pills since a few months after Andy was born to regulate my hormone levels. I had serious bleeding which landed me in the ER a few months after childbirth. I took regular birth control pills for the first few months, then switched to a daily low dose estrogen/progesterone that completely eliminated my periods. A lot of people don’t know this, but hormone imbalances can cause a whole bunch of other debilitating issues. Severe anxiety, GI issues, sleeplessness (like I needed any worse sleep than I normally get!), depression, extreme fatigue, etc. The ER doctor told me this back then, thankfully, otherwise I would have gone crazy imagining all the serious diseases that I would have thought I had. If it isn’t already clear, I am an excessive worrier (I will tell more about that in a later post). It took about a year, but the pills finally got control of my ovaries and regulated things to where the excessive bleeding stopped, and the anxiety and sleeplessness were manageable.

I held out hope right up until the radiologist called me with the news the following day.  We were on our drive to North Carolina. With all the kids in the car. Breast cancer. But the lymph node he’d tested was negative – a slight bit of good news with the bad.

Cancer. I have cancer. I am no longer me. I am one of them. The person who walks around looking sick. Who loses her hair. Who doesn’t know if she’ll live or die. No more time for sitting around just goofing, thinking pleasant thoughts, wondering what fun thing I might want to do on the weekend. From now on, I’d be spending all my time trying to survive. Doctors appointments, and treatments, and fear.