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mammogram update

February 10, 2018

Yesterday I had a routine mammogram in preparation for my 6 month follow-up appointment with my surgeon. After the mammogram they have you go back and sit in the waiting area while the doctor reviews the images. It’s a little depressing sitting there with other women who you know are all a little anxious, some possibly already dealing with cancer, but I didn’t feel nervous. I was just pleased that I had time to read my book.

Then they called me back for another image. The tech told me this doctor tends to ask for more, he’s thorough, which was fine. I got a little teary, but I think I was just starting to feel sorry for myself for being at least 20 years younger than all the other women I was waiting with. (“I’m too young to be dealing with this.”)

Then I had to wait some more. Next she said he wanted to do an ultrasound. When I went in the room for the ultrasound, I got really upset – again feeling sorry for myself for what I’m dealing with, for all the times I’ve been on an ultrasound table scared to see what they wouldn’t or would find, but also starting to feel scared that I’m starting this whole cancer business over again.

The technician spent a lot of time focusing on the 3 o’clock part of my breast which added to my nervousness – are we dealing with something new? My fibroadenoma was around 8 o’clock and the tumor was at 6 o’clock. It turned out that she just wasn’t able to find what they had pointed out, so she brought the doctor in. Between them, they spotted what looked like a 1cm cyst and another small spot.

He recommended that we move my appointment up with my doctor (I was supposed to see her on 2/26) since they had found something suspicious. I was really upset leaving the mammogram place. I had been wondering lately if I wasn’t taking this seriously enough, but I don’t know how else to be. I can’t make myself be afraid (nor should I). When we last checked it looked like all the cancer was gone, and the numbers during my latest blood work seemed to confirm that. I feel great – better than ever just about. Plus, I don’t actually have time to worry about whether it will come back. Yet this news was such a shock to me.

During all the waiting, I tried to corral my thoughts. I don’t think there’s anything wrong with being afraid, but I can’t let it run me over. I started thinking through Psalm 23 just to give myself something to focus on. The part that says “he prepares a table before me in the presence of my enemies” made me think, who is my enemy? Right now, cancer is my enemy. Yet God is preparing for me to sit down and eat, something normal and necessary, even when the enemy is right in my face. Not running or hiding. “My cup runs over.” Yes it does. I’ve experienced so much goodness in my life. “Surely goodness and mercy will follow me all the days of my life (regardless of how many or few) and I will dwell in the house of the Lord forever.”

I went to my surgeon’s office and was greeted by the receptionist who immediately came outside into the waiting area and hugged me and began to pray for me. I don’t even know how she knew I would be receptive and appreciative of that, but I was thankful for her in that moment. They scheduled me first thing Monday and gave me a slightly longer time slot in case the doctor decided we could/should biopsy then. I also spoke to two people immediately following this who told me about their multiple biopsies that didn’t bring back bad news which was really encouraging since it is now easy for me to assume the worst.

Just the day before, I had gone in for my monthly treatment at Real Health Medical. The cancer nurse, Karen, had mentioned being really concerned when I told her I wasn’t feeling well in January. I asked her to tell me exactly what her concerns were. Like I said earlier, I was wondering if I was pushing the “that was easy” button a little too hard on this cancer business. She explained how they believe that because of my history with cancer, it seems that my immune system tends not to do its job. We are finally get it to respond as it should, but if I get sick, my immune system can get distracted fighting a cold and not be able to deal with cancer cells. This is the totally dumbed down version of what’s going on, but I get the point. We talked about precautions I need to take and it was a good kick in the pants for me.

It’s hard for me to admit that I have limitations or need to take any special precautions. I want to be able to do all the things, but that isn’t my reality. My brother Peter made the perfect comparison between this and my dad being a Type 1 diabetic his whole life. He is living a long and healthy life, but it’s because he is vigilant about taking care of himself. He can’t just decide that he doesn’t want to take his insulin or wants to eat ice cream for days and think it’s going to serve him well. I guess anyone who lives with a sickness would be familiar with this mindset. It sucks, but it’s better than the alternative.

So now I wait. I’ve been in touch with Karen and I should hear from Dr. Bergeron this weekend to see what he thinks. Monday morning I’ll see Dr. Shroff (my surgeon at The Breast Center) and see what she thinks. And then after that we’ll go to China and have to wait til I get back to find out more. I’m trusting that this is nothing, and if it isn’t, I believe that God will make our steps plain as He has done up to this point. I feel better today and haven’t felt like crying since yesterday afternoon, but know that I will have to work to keep the worry gremlins away.

That’s it for now. A hot mess of a real-time update.

Good test results

December 15, 2017

After 8 weeks of immunotherapy, I had blood work done and got the results this week. Before I started, we did extensive testing – hormones, cancer marker, vitamin levels, etc… to have a baseline. At that point, a month after having a lumpectomy and lymph nodes removed, my cancer marker was 27. (This article explains more about the cancer marker CA 27.29.) Like many of the tests available, it’s not a guarantee of anything, but it seems like it’s a good indicator. The normal range is below 38, so we started great, and now it’s down to 21!

I was relieved when I got this news, grateful, thanking Jesus, but I have struggled to be excited. I think part of it is my general place in life right now, part is just that I’m over dealing with cancer, and part is that I know that keeping cancer away will be somewhat of a lifelong journey. I’ve had a swollen lymph node for about 6 weeks and we have been treating it in various ways. I was stressed for a while that it was more cancer, but about two weeks ago, I had several conversations that helped me have peace about that. It didn’t make sense logically that it would be cancer since I had a clean PET scan in October. Obviously, nothing is impossible, but based on the type of cancer I have/had, it was highly unlikely. So maybe the fact that I already felt good about my progress has diminished my enthusiasm over good results?

I have a new protocol now – phase 2, which has me only going to the doctor once a month and only for IVs (instead of every week for multiple treatments)! We have modified the arsenal of supplements I take and will be addressing some hormonal things. We will test again in 3 months, and that will also be around the time I have my next mammogram and appointment with my surgeon. It’s hard to believe that it’s just been 4 months since I was diagnosed.

There’s always more to say, so much that I have yet to write about, but I need to let you know that there is reason for rejoicing. I’m so grateful for all the love and support and prayers we have and continue to receive. Thanks be to God.

Basic breast cancer history

October 8, 2017

July 2017 – I noticed a lump in my right breast enough times to know that it wasn’t a milk gland or something else that would go away. Saw my doctor who referred me for an ultrasound where they confirmed that “Yes, there is a lump in your breast”…

August 2 – Went to The Breast Center and had another ultrasound. I was hoping for a biopsy, but had to wait until the following week. Had a mammogram later that day, which I can only describe as doing a dance with a stranger and a machine and you don’t know any of the steps.

August 7 – Had the biopsy done. Not that worried since I’ve been through this before. I had a benign lump removed in 2005 which I will talk about later. My doctor, Dr. Paulomi Shroff, is a “little concerned” because the lump doesn’t look like anything familiar – not even cancer. She tells me to bring someone to my next appointment because it could be a lot of information. This concerns me. It’s our 7 year anniversary, and the 2 year anniversary of Jonathan’s vasectomy. We agree that we should stop being jabbed with needles on our anniversary.

August 14 – Jonathan and I go to the appointment and learn that the lump does have cancer cells in it. Dr. Shroff says that even so, everything about it looks good. It doesn’t seem to be in my lymph nodes, receptors are whatever way is best and it doesn’t seem aggressive. Because of my age (36), she wants me to see a genetic counselor. We schedule an MRI and appointments with an oncologist and genetic counselor.

August 15 – I see the genetic counselor. There isn’t any history of cancer on either side of my family. The counselor doesn’t expect to find anything, but we run a 9 gene panel just to check the ones that are most commonly connected with breast cancer. I had neuroblastoma as a baby, which I will talk about a lot more later, but there is only one known gene that might link breast cancer and neuroblastoma. She said if that mutation were present there would be a LOT of other cancers in our family.

August 16 – We meet with an oncologist. She tells me the cancer is stage 1 or 2 based on its size. She had seen my other doctor before my appointment and they had discussed doing chemo to shrink the tumor to improve the cosmetic results of a lumpectomy. I told her my history, my wariness of conventional treatments, my desire to do as little as necessary (lumpectomy vs mastectomy). She was understanding of this.

August 18 – I have a breast MRI. I will talk about this more later as well. It was a total buzzkill and brought me back to cancer reality.

August 23 – I have an appointment with my main doctor and surgeon, Dr. Shroff. I decided to go ahead with a lumpectomy on September 1. She talked about waiting until we got the results from genetic testing back, but I knew it wouldn’t make a difference for me at this point since I don’t think I would have a mastectomy either way.

August 29 – I follow up with the genetic counselor. Everything came back negative as we expected. We decided to run one more test on 14 more genes since it’s easy to do and already covered by insurance. (Nothing came from those either.)

My fortune cookie from lunch after meeting with the genetic counselor. I believe this. 

September 1 – I have a lumpectomy and sentinel lymph node dissection. This is where they inject a dye in my breast, see which lymph nodes it drains to first, and remove them. I was concerned because depending on what the nodes looked like, they could decide to take many more of them and I wouldn’t know until after surgery. Thankfully, they only ended up taking three. Surgery went fine and I was home that evening.

September 7 – Follow up with Dr. Shroff. She told us that two of the three lymph nodes they removed had some cancer in them. The tumor was made up of invasive and non-invasive cancer, which is why it was so weird. The margins on the non-invasive were small, but still within allowed limits. She was okay with leaving everything as is, but was going to discuss it with the tumor board. She told me I would have to have chemo in addition to radiation and hormone therapy. This was a difficult appointment.

September 12 – We meet with the oncologist again. Since she knew where I was coming from with regards to treatment, she didn’t insist on chemo, but said if I was going to do one thing, hormone therapy was going to be the most effective and necessary treatment. I wasn’t happy with the lack of specific information we got. I asked for other testing options like a PET scan, but didn’t get anything. She referred me to another oncologist at Emory for a second opinion.

September 15 – Back to Dr. Shroff. I’m healing well. She is kind and as helpful as possible in getting me more details about what I am dealing with, likelihood of recurrence, etc…

September 20 – Meeting with the radiation oncologist. He explains everything and tells me if I choose not to have radiation, I should have a mastectomy.

At this point, we are about to go out of town for family vacation and then to a wedding, so I put out some feelers for alternative treatments. I had already been in contact with Oasis of Hope in Tijuana where I received treatment as a baby. I got a lot of good feedback, but mostly checked out for the next 10 days while we were out of town. I did contact the office of Dr. Bergeron (Real Health Medical), a doctor who practices holistic, functional and alternative medicine, per multiple recommendations.

October 2 – Had a 4.5 hour appointment at Real Health Medical in Roswell. They did extensive blood work, metabolic testing, and a lot of other things I don’t know or can’t remember the names for. I have been concerned with getting to the root of why my body has broken down in this way and believe this is a good place to start.

October 4 – We met with Dr. Gogineni at Emory. Though I didn’t necessarily like some of her recommendations, we really like her. Very methodical in her explanations and seems to understand that I need a lot of information. She pulled up some numbers based on my exact case, explained two different tests available (MammaPrint and Oncatype) and which would best apply to me (MammaPrint). She ordered that test and a PET scan.

And that’s where we are now. I have an appointment tomorrow at RHM to get my results and see what treatment plan they have for me. On Tuesday, October 10, I will have a PET scan, and then I will follow up with Dr. Gogineni on October 26.

There is so much more to share, but I hope this will help explain the basics of what’s been going on and give me a space to update more regularly.

Just write something already

October 6, 2017

Over the last couple months (and years), I keep hearing and thinking “you need to write.” Problem is, I rarely have head space for anything more than the necessary. So here I am, almost two months into breast cancer, and other than the odd Instagram post, I haven’t written anything. And since I don’t know where to begin, I’m going to begin with those posts. This one is from August 27, 2017 – about two weeks after we found out.

This is real life – imperfect, off balance and lumpy. We found out recently that I have breast cancer. One of the hardest parts has been telling people, but since I operate from a place of “I would want to know if it were you,” I want others to know. And lest anyone panic, it seems that everything is as good as can be while still being cancer – early stages, no lymph nodes, etc… Over the last days of tests and appointments, we have felt so loved and cared for. I’m scheduled to have a lumpectomy on Friday, and then from there we will figure out treatment. I don’t know what the future holds, but my current prayer is to live in the present, one day at a time, and to look for Jesus in the chaos. #breastcancer

I had a lot of enthusiasm when I started our garden this summer. A bathroom renovation got in the way, school started and then with cancer, it has been all but abandoned. These cantaloupe somehow managed to come out of it.

I had been struggling to figure out how to make this public, which is really strange for me since I’m a very out-in-the-open person, but when I found these growing alongside the house, it seemed perfect.

The fruit we see in grocery stores in all its uniform perfection is the exception. Just as flawless people and flawless lives are (they are more likely fake than the exception.) When we are going through hard times, it always helps me to know that everyone goes through them. No person or family is exempt. It is part of living in a broken world.

And the good news is, lumpy cantaloupe taste just as good, if not better, than the perfect ones.

Together

September 21, 2016

I have a love/hate relationship with Facebook. They are always in my business reminding me to do things, telling me who to be friends with, and asking me where I went to school. One of the few things I do appreciate is them showing me what I was doing every year on that day.

This is the one that popped up today. It was actually posted two days late – it was taken at a birthday party on September 19, 2008, but it was a pretty monumental day.

When people ask us how long we’ve been together, there’s usually an awkward laugh and some confused math. Depending on how much you want to know, we say we met in 2005 or that we started dating in 2008. Those in between years are not ones we are proud of. We were both interested when we met, but for various reasons, we were never willing/able to commit to dating at the same time. We put each other through a lot. We probably put our friends and family through even more.

By late summer of 2008, I was ready to give up. (And I meant it this time! 😜)  He started taking me out on “real dates” and we went to this party together in September. While we were sitting on this couch, Jonathan said “If I tell you something, do you promise not to freak out?” My first thought was that there was a spider or something in my hair. I must’ve said yes, because then he told me that he was going to marry me one day. At the time, I wasn’t sure if he really thought this or if it was the wine talking, but by the end of the weekend, September 21, 2008, I was thrilled to write this in my planner:

 

It was nice to see this date brought to mind (though I’m not sure Jonathan will appreciate another “anniversary” to recognize.) I’m a dates person and I remember a lot of silly dates, but my memory has really gone downhill in the last few years. I was asking Jonathan about this event, trying to remember the details (which is why I pulled my old planner out), but it’s become hazy for both of us. At one point, this was the most significant time in my life. We had gone from 2.5 years of I’m-not-sure-where-this-is-going to actually dating.

Now, after 6 years of marriage, 3 children, 2 jobs, multiple moves and steady, committed (imperfect and flawed) love the whole time, it’s not that big of a deal, but it is a good reminder of how far we’ve come. A good reminder that God can make beauty out of anything.

Mud pie kitchen

July 21, 2016

A few months ago, my sister Christine sent me an article about mud pie kitchens. For those of you, like me, who had never heard this name, it’s basically an outdoor kitchen for kids. She told me about the play kitchen my mom had made for her when she was little. I remembered having a great time making mud pies outside even though my hands were so cold.

Jonathan and I had talked about making one for the girls, even discussed where it would go, but hadn’t gotten further than that. We haven’t had any of the necessary resources to take on a project. I’ve been keeping an eye out for things that might work when I was at thrift stores, but just hadn’t found anything. I know we could have just gone to Home Depot and bought wood and made it (assuming we had the time, money and skills to do that), but part of the fun in projects like this is the hunt for the right parts.

One thing I really appreciate about my childhood was that we (from my parents down to us kids) often had to be really creative to get something we wanted. We were rarely in a position to just pay full price for something, so we had to figure out other ways to make or find them. My mom would make clothes for us and then make outfits for our dolls with the fabric scraps! There is a lot of creativity already in my family, but the lack of funds forced it to come out even more than it may have otherwise. When we had dress-up days at school, we never bought a costume from the store. First of all, they were too expensive. And second, they were never as good as the ones we could make ourselves.

There may have been times as a kid when I disliked not being able to just go buy something, but I don’t remember that. I remember enjoying the search, the thrill of the perfect find, and seeing a completed project.

Now, as an adult, I feel the same way. I enjoy getting a deal on something. I enjoy being creative. I enjoy making something that is unique. I rarely have the time or energy to do this, but there are moments when I’m able and it’s wonderful.

Sometimes, as I walk through a store, I ask God to show me the right things to get. I definitely struggle with the feeling of why would He care about a mud pie kitchen for my girls, but in faith, I believe He does. I don’t think God is some Divine Deal Bringer or some Thrift Store Genie, but I do believe that He cares about our lives and how we spend our money. If He knows how many hairs are on our heads, he surely cares about the other details of our lives. And who better to ask for creative advice than the original Creator?

So anyway, all that to say that today, I went to drop some stuff off at Goodwill, and I noticed some items made of wood by their dumpster. I am not above scrounging around, but I admit that I was looking over my shoulder as I drove over to check things out. The two things I snagged were what looked like the top of a long side table and a pallet. I’ve seen people use pallets as the “backsplash” for outdoor kitchens and screw in hooks to hang pots and utensils, and the table top was the perfect width for a counter. It’s also made of wood instead of particle board which would probably fall apart after too much time outdoors. There was another piece that had promise, but I think it would’ve required more carpentry skills than we have in our house. I’m still not sure about the rest of it – we need to find some kind of legs for it to sit on – but it’s a great start and was enough to make me feel like this was actually going to happen this summer.

This is our collection so far. I’m really excited about it. The silver pot is exactly like the ones we had when I was growing up, and Hummel dolls always remind me of my family.

In case any of you should think that I have it so together that I’m building things now, I don’t. I left the house because I couldn’t bear to be around my kids anymore. They rarely all nap at the same time, and someone wants to be on me ALL THE TIME. I knew Jonathan was going to be gone this evening, so I just had to get away. One of the reasons I want an outdoor kitchen in the first place is to get them and their never-ceasing voices out of the house! In fact, a lot of my projects are partially an excuse not to have to take care of my kids.

So there you have it. Creativity is good for my soul. Getting good deals/free things evidently is too 🙂

Rules of life

July 18, 2016

It’s interesting to me how it seems that when we are ready or need to learn something, the lesson comes from so many directions.

I’m in a non-fiction book club, and several months ago, we read “Better Than Before” by Gretchen Rubin. I think it sounds too dramatic to say something is life changing, but it has had a radical impact on my thinking. It’s all about habits, and instead of explaining how to make or break a habit, she has come up with a huge variety of tools for helping us understand ourselves better. Once we start to understand our tendencies, we are able to better shape our habits.

I’ve always been a skeptic when it comes to things that begin with self-: self-help, self-knowledge, etc… But knowing my tendency (I’m a Questioner) and seeing what strategies I can use to build habits has been fascinating and amazing. Gretchen has a list of rules for herself. I believe the first one is to “Be Gretchen”. At face value, this feels a little silly to me, but by understanding ourselves and being honest, we can keep from continually trying to shove a round peg into a square hole and then getting discouraged and depressed when it doesn’t fit.

Our pastor has frequently referred to his rules of life. I can’t even remember if that’s exactly what he calls them, but he has figured out a certain set of things that are necessary in order for him to grow and function in a healthy, life-giving way. For him, they include things like spending time every day reading the Bible, praying, reading quality books, exercising, and having conversations with trusted people. He mentions these rules occasionally and I’ve always meant to think about what my rules of life would be, but alas, there usually isn’t a whole lot of time for deep, introspective thinking around here.

To bring this idea from another angle, I was listening to a podcast recently. I think it was NPR’s TED Radio Hour. One of the guys was saying that he goes to the gym either every day or six days a week. They asked him why this was, and his answer was that if he didn’t say that he went every day, then he wouldn’t go. If going to the gym was a choice he had to make every day, he would often choose not to go. Instead, by making it a rule, he has eliminated the choice. He just goes because that’s what he does.

Back to Gretchen. (We’re obviously best pals so I call her by her first name ;-).) At the beginning of her book, she talks about how habits free us. She explains how making decision after decision is tiring and we eventually lose our resolve after having made so many decisions in a day. By establishing habits, we are freeing ourselves to make fewer and therefore (hopefully) better decisions.

Now that we have survived the first year of three 4 and under (it still feels like survival mode most days, but the fog is beginning to lift), Jonathan and I have been talking about things we would like to change in our lives. Since we know what tendency we both are (Questioner and Obliger), I’ve been trying to figure out which strategies would help. I’m wondering if it would help if we made some rules of life for our family.  For example, “Lewises go outside (or go for a walk) every day.” We have “(adult) Lewises drink coffee every morning” and “(adult) Lewises drink wine at night” nailed down without much effort.

I’d love to hear if you have any rules of life. Maybe you’ve never stated that’s what they are, but are there any things that are a consistent part of your daily life? I’d like to think that some of these things just happen, but it seems few of us naturally do that which is healthiest.

 

 

Currently reading: “With:Reimagining the Way You Relate to God” by Skye Jethani

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