Fear showed up today

The past 24-hours have been a challenge. After the meeting with the surgeon yesterday, we checked four new things off our list.

  1. Lucia had a chest x-ray.
  2. She also had bloodwork.
  3. The BRACA results came back.
  4. We made an appointment for the surgery.

The chest x-ray, which is a standard pre-op procedure, showed no signs of any problems such as anything in the heart or lungs. The bloodwork results will take a few days.

The big news was the BRACA report, which said she was clear of the six primary genes (they are aware of) that cause hereditary cancer. This news is the difference between a simple mastectomy and a double mastectomy.

Early this morning, the doctor’s office called, saying they had an opening December 9 at the hospital across the street. Getting a date on the calendar accelerates all the thought temptations you can have.

Those thoughts collided in Lucia’s mind today. It made it more real than just talking about it. We are actively working to take our thoughts captive. Today was more somber than others.

Walking out mystery

We are looking into a second opinion. We’re not avoiding what appears to be the inevitable, but we do want to be thorough.

There is a tension here: we want as much appropriate knowledge as we can get, and we don’t want to prolong the inevitable. We are cautiously resting in the mystery of these two things.

Emails are nice

Several folks have sent wonderfully encouraging (and releasing) emails. What I mean is that they begin (or end) their email by saying no need to respond. How wonderful. That helps. Our habit is to respond to emails; the Gospel motivates you to acknowledge kindness, even if it’s an email.

It is hard for us to not acknowledge an email sent but for now, we’re in minimalization mode. We’re resting in our limitations.

Laughing continues

On a side note, the laughing and general happiness in our home has not subsided a bit. We’re playing Christmas music, decorating the house, dancing, and being our usual silly selves. It appears to me the LORD has big buckets of grace He likes to dump on folks.

Second meeting with doctor on 11/28

UPDATE AFTER THIS ARTICLE WAS POSTED: The BRACA results came back saying, Lucia did not have the six main cancer genes, which means there is no need for a double-mastectomy.

We met with Dr. Cochran today. He had a med student with him, Bradley Cagle. Dr. Cochran said there was not a lot of new data, though it felt like more data. It was probably the reality of the surgery date being upon us that made it feel more real.

We’re still waiting for the BRACA report, which we knew would not come before this meeting. The BRACA information determines if there is a need for a double mastectomy.

‘Breast cancer genes’ in which some mutations may relate to the elevated risk of breast, ovarian, and/or other kinds of cancer. Sometimes spelled BRAC or BRACA; not always capitalized.

Dr. Cochran believes a mastectomy is the best option due to the distance between the masses and the number of them (seven). He seems to want to do a double mastectomy, though he’s not pushing it on us and realizes Lucia’s hesitancy, which I am hesitant too since they can monitor future cancer and it’s not a wrong option to wait. BTW, we do not feel pressured and we do feel in charge of the decision-making.

The ideal treatment is a lumpectomy, then radiation, and cosmetic surgery but he is not recommending this for her since the number of and spread out masses. A lumpectomy under these conditions does not leave a good cosmetic result.

We still do not know about post-mastectomy treatments, meaning, the use of chemo or radiation or just a pill (estrogen blocker). The lymph nodes are part of the decision regarding these post-op treatments. At the time of the surgery, the doctor will make another cut to get what he needs to test the lymph nodes. If the lymph nodes are cancer free, then Lucia might not need radiation or chemo; she can take the pill.

As for reconstruction, they don’t want to do the mastectomy and reconstruction at the same time. The reason for two separate surgeries (mastectomy and reconstruction) is because he does not want the reconstructed breast in the way of the radiation or chemo.

There are many types of reconstruction, the more common one is doing a “tummy tuck” (taking skin from the stomach area) to rebuild the breast.

A mastectomy requires a drain, which means overnight in the hospital. There would be a two-week recovery at home, and then we’ll look at the chemo/radiation/pill options.  It takes about 3.5 working days to get the lymph node information back post-mastectomy.

The next steps are:

  1. Get a pre-op chest X-ray and blood work. (We’re waiting at the hospital right now for these two things.)
  2. Set a date for surgery. It may be January due to no open dates for Pelham Medical Center (across the road from our home).
  3. Learn the results of BRACA report.
  4. Meet with a plastic surgeon. The two recommended are Dr. Birchenough or Dr. Orseck.
  5. Meet with the anesthesiologist
  6. Then the surgery.

Next steps…Lucia’s cancer

Thank you for your kind words, prayers, and encouragement. The process thus far and where we are today:

1. Rick and Lucia working through the news (Nov 01)
2. Getting all the data that is available (Nov 1-10)
3. Walking the kids through what we know (Nov 10)
4. Letting people know so prayers can be made (Nov 20)

Next steps…

We have our next meeting with the surgeon on November 28th. We’re waiting to find out about grant qualifications to see how we’re going to pay for these things. Our next meeting with the geneticist is December 1. The chemo doc meeting is on December 7.

We were hoping for the geneticist meeting before the surgeon meeting because the results from the genetic testing will tell us if it needs to be a double mastectomy. We’re still praying about a lumpectomy but with it being seven masses, the upper quadrant will be removed, thus, reconstruction for that versus a mastectomy will probably be too much.

Though we know (pretty much) what we have to do, we want to keep all the cards on the table until all the meetings and prayers are complete.

The surgery will take place mid-December, which could be somewhere between the 14th to 21st. There will be a couple of weeks of acute recoup, and then we’ll see about radiation after the first of the year.

They prefer radiation before they do reconstruction so they can be assured to get any cancer stragglers without the new breast(s) being in the way. Lucia will not be able to lift anything over ten pounds. She’ll have limited movement on her left arm. She can be mobile somewhat quickly. They are anticipating a one-night stay over in the hospital.

The two most important upcoming meetings will be the surgeon and then the geneticist. We’re praying it’s not a double mastectomy.

Lucia is not as concerned with the mastectomy (or chemo if that is needed) and the hair fallout, as much as she is concerned about the children seeing her this way. However, I think post-surgery and post-chemo (if that is needed), there will be concerns but for now, that is a future worry, which the LORD has been great to keep her from running down those paths.

She has been experiencing disrupted sleep, which is a big deal for her because the LORD has given her the gift of rest: Historically, she goes to sleep quickly and does not wake up until the morning. We are praying she can experience that gift again.

How to guard a public life through a personal problem

One of the biggest tensions we’ve struggled with through this process is how to let folks know what’s going on while not letting folks know what’s going on. We are part of the body of Christ, the most loving community in the world. Besides that, prayer is our greatest asset, thus, we want folks to know so prayers can be offered.

Then there is another side of public awareness: endless emails, phone calls, healing suggestions, questions, prayers, the retelling of the story, and, of course, all the updates–because the news changes daily, sometimes by the hour.

I vividly recall our first miscarriage. We told folks we were pregnant as soon as we found out we were pregnant. Then the miscarriage. I remember watching Lucia tell the story to each caller, over and over again. I remember what it did to her soul. Hence the tension.

People care because they are Christians, and people need to know what’s happening to folks they care about. The other side of that truth is how can we guard our lives against the negative side-effects of caring people? Can I say it that way?

We want folks to know because we want folks to talk to God about this. We also want to experience their care. But with a team of doctors, a mountain of paperwork, a ministry the two of us have never been able to get on top of, plus the weight (and mystery) of cancer, we need time and space to cast these things on the LORD (or just sleep). This is why I’m writing a blog; we can tell the story one time and many folks can read, learn, and pray.

Then there is Facebook. We’re not ready for that.

Perchance you read this, we would appreciate the communication be limited, the prayers be many, and I’ll do my best to keep you fully apprised of what’s up.

The communication process about Lucia’s cancer

We waited about ten days before we told the children about Lucia’s cancer. We wanted to get as much information as possible so we could answer their questions and walk them through the process. This also gave us time to pray, cry, and play sappy love songs. I can’t really explain that last one, except to say our marriage has been magical. We love to get lost in sappy love songs. It’s not curable.

After we were sufficiently recovered from the many meetings and had enough information in hand, we told the children what was going on. Our favorite family talking spot is our bed. We gathered, and there was really no good way to say your mother has cancer, so I just said it and then let silence fill the room for a few seconds.

Ansa (10) silently cried. Tristen (15) internalized the news. Haydn (13) nervously laughed/joked. They responded as expected, according to their personalities. Tristen said she knew the dream could not last forever, which is her way of describing her family life. She has been clear that she does not want to grow old. She likes things just as they are. Needless to say, this is a major dream-disrupter.

We had a good talk that night, and we have followed up each day, several times during the days–all together and individually, both of us talking to them individually.

They have done well, though they do not understand all that it means. We also have not talked about the full extent of the surgery because we want to guard their minds against running down some bad trails. The LORD’s grace has been appropriated through this and they are doing better than expected, which is a mercy.

As far as our thoughts? We have gone down a few of those trails too. We are checking on each other throughout the day, in random ways, depending on a phone call or new information. It’s constant and random soul surveillance.

We also have been more tired than usual. The information comes in waves. It’s more like “trauma waves” as Lucia has called it. You don’t feel it in the moment but after another difficult conversation with another doctor, about an hour later, you feel tired. We have been taking a lot of naps.

We decided to not tell anyone about this until (1) we had enough information and (2) our children were sufficiently through what they needed to get through. We decided this weekend (November 19) would be when we told folks. There were six specific families we wanted to talk to face-to-face, (and four phone calls) so we spent all of Saturday going from house to house, meeting with these families to talk through the news.

To say that was exhausting is an understatement. We did not make it through all the families because some of them took longer than expected. One of those families was Lucia’s parents. They are 93 (dad) and 83 (mom) years old. One sister happened to come over, which was great. We expected to call all three sisters.

Lucia called her other two sisters Saturday night. The other two-of-six families we did not get a chance to meet with on Saturday. We met them today after the church meeting. I texted them yesterday, asking if we could chat after the meeting.

Everyone was phenomenal. No surprise. Lots of tears, hugs, encouragement, and prayers. Lucia called one more friend Sunday afternoon, and she called her lifelong best girlfriend, who lives in Kansas Friday. I did let two board members know last Tuesday, though I asked them to not let anyone know until after this weekend.

We did not want the word to get back to her parents before we could tell them face to face. We also did not want these six families to find out through email. It seemed wrong to not meet them face to face. We’re exhausted from this but it was the right thing to do. It’s another one of those “trauma waves” that comes over you.

There will be more waves. There will be more grace.

Lucia is diagnosed with stage one breast cancer

Late spring, 2016, Lucia felt a lump under her left breast. She monitored it throughout the summer, thinking it was a physical anomaly, not cancer. We all just finished a mud run, so she thought something popped up because of the run.

It did not go away, so on November 01 she went for a mammogram. The doctors believed it was cancer. They also found seven lumps, not one. We went back a few days later for a biopsy. The doctor said it was cancer, thus, the information they were looking for was not if it was cancer but what stage. How bad is it?

We set up our third appointment a few days later. This time it was across the street at the Pelham Medical Center. The first two appointments were in Spartanburg, SC, a few miles away.

Tristen was in school during these appointments. For this third one, we left Haydn and Ansa home. We were unsure of the report, which is why we sat outside the cancer center, struggling in a surreal way as to whether we were going in. We knew it was futile: we had to go in, but we struggled with potentially hearing the worst kind of news.

The same doctor from Spartanburg was there. She said it was stage one and Lucia had an 80+% rate of recovery with no side effects. That was a relief. It appears she will more than likely lose one breast. We’re waiting for one more report to see if it’s a simple, double mastectomy, as opposed to radical.

In the meantime, there is genetic testing to see the effect on the kids. Then there are all the grants we need to apply for. There is a team of doctors and other specialists part of this process. As our surgeon said, “You will be well-doctored through this process.” He is right. So many people. So many questions.

We have since met with the radiologist. There will be a future meeting with a plastic surgeon. All the folks we’ve met thus far have been wonderfully patient, caring, and thorough. Ironically, they reflect our relational model of ministry.

Historically, I meet with folks for two hours rather than 55-minutes. This is intentional because people are people, not cattle to be herded. It’s kinda cool to be on the other end of this kind of relational model for care. Our cancer team is fabulous. They are super-busy but we feel as though we’re the only folks they are caring for. Lucia’s nurse navigator called the other day asking how she was doing. They talked for an hour. It’s amazing kindness from the LORD.

God thoughts

We are not struggling with any kind of negative “God thoughts” regarding this cancer. If anything, our faith in the LORD is strengthened, if I can say it that way. We’re not special or the exception to fallenness. Though I always figured the most traumatic health problems would be me, it’s not a surprise this one is Lucia.

We’re all uniquely fallen. You can do everything right and still have cancer. That is not an excuse to be foolish or careless, which we are not, but it’s an affirmation that “fallenness” does not respect anyone. Nevertheless, God is still good, still strong, still kind, and madly in love with us, and we are in love with Him. Why not? He’s the only one that can buoy us during this difficult season.

And He has.