An interesting transition moving from the US to Europe is adjusting to the barrage of super sexualized images. Boobs are everywhere. On TV and in advertisements but in general people here don’t seem to care. It is an accepted part of the culture and female anatomy that make them shake their heads at our “nipple gate” (Janet Jackson, Superbowl 2004) fascinated country. In a very broad way it can boil down to the history and foundations of the countries/regions. The US has a foundation in puritanical roots with religious refugees trying to escape persecution in Europe. So, we are hyper sensitive to sexualized images but since we haven’t had recent wars fought on our soil we are less sensitive to violence. Flip that around for Europeans…with world war I and II still within the last 100 years they don’t accept violent images as cavalierly as Americans do but a little extra skin and topless beaches? No problem. Again, these are sweeping generalizations but provide a bit of a foundation for the two perspectives. And I have had a crash course in the different approach to modesty as I have worked my way through the various medical appointments here. Let’s just say I’ve had to (ahem) embrace the phrase “This situation is only as embarrassing as I make it…because no one else cares.”
So what are boobs? They are these weird lumps of fat and glands that can have a hypnotic effect on men and can be taxing and terrifying to women. We enhance them, we flatten them, we push them up, we criticize them, we compare them, we can sometimes even name them, but ultimately they are designed for milk production…and unfortunately very frequently can cause big problems to our health. The statistics are now 1 in 8 women will develop breast cancer within their lifetime. That doesn’t mean 1 in 8 women that walk into a Dr.’s office on a daily basis will come out with a cancer diagnosis but over the course of their life will be confronted with this disease. And it doesn’t always happen when you are older, or if there is a history in your family – obviously, that is why I am now writing this.
The question I get most often now from women is “How did you know? How did you find it?” Here’s the answer…I found it with a self-exam. I am a member of the Zeta Tau Alpha fraternity and our philanthropy is the Susan G. Komen foundation so I have been surrounded by “how to” do a self breast exam for over 10 years. Just because I know I should, does that mean I did regularly? No. Because I’m young, healthy, there’s no history in my family…blah, blah, blah. But I think the reason why I didn’t is because at some point I heard a damaging statement “if a tumor is big enough to feel in a self exam…it’s already too late.” So, I suppose I thought why bother. That may have been true years ago, but it is DEFINITELY not true now.
Our best defense is early detection, and I truly thank God for prompting me to check in February. There is a lot that can be done now. But you have to catch it. And the thing that regular breast exams give you is a reference for when things change. It was hard for me to do a self exam because my breast were naturally lumpy and bumpy and it can be difficult to know what is a problem. Check with a Dr. on what the normal state of your breasts is and then check every month to see if something changes. Because that is what I felt. Something different. Very different. A mass that I could move around. All I can say is that you’ll know the difference when you feel it (obnoxious right? Sorry) but you have to have the baseline reference to do it. Here is a link on the proper steps to perform a self exam…please forward to all the women you know and love.
Basic Steps for Breast Self Exam
Tips for Self Exam
I have been thinking about this profound encounter for a couple weeks but haven’t been prepared to share it until now.
One of the concerns and questions Jonathan and I had after receiving my diagnosis was “how does this impact our desire for a family?” We had been discussing it for a while but since we are so far away from family it was always a bigger discussion about dreams and plans for the future. So, we hadn’t reached a moment where we were ready yet…we thought we had time…not an endless amount of time…but a few years. Enter breast cancer. All of a sudden our few years evaporates as I am looking at potentially up to 5 years of chemo/hormone suppressants with no guarantee that everything “down there” will go back to normal when it’s all over. We decided to pursue 1 IVF round to freeze some embryos before I begin chemo to hopefully preserve the option to have a family in the future.
We had our first consultation with an IVF doctor 1 week after my surgery and before we received any of the pathology results from my tumor. At this moment we still only knew I had a reasonably large tumor that had spread to at least 1 lymph node….but it was still possible that it has spread further. We sat down in the doctor’s office and began to have the discussion about all our options. (She was gracious and had the conversation in English…which we always very much appreciate) The specific option we choose will depend on whether my tumor is hormone dependant or not and she needs more information from my oncologist. Fair enough. But she followed that with a statement that stopped me cold — “Plus, I need to find out what your chances of survival are to see whether this procedure makes sense. You know, the laws in the Netherlands are such that the embryos are destroyed if one partner dies.”
I’m sorry…what did you just say? That there is a certain prognosis level where you might not waste your time with this procedure? Mentally, for the last 3 weeks I had been convincing myself that death from this was not an option for me…I am young, strong and stubborn…cancer is not going to beat me…statistics do not apply to me. This doctor’s statement initially made me furious but after some time it made me pause and reflect. It made me connect death with my life in a concrete way. It made me sit face to face with the fact that someday I will die…we all will. Of course I know in my head that everybody dies but it never seems real for me. When you’re young you feel invincible and that somehow life owes you a certain amount of time. It doesn’t. We are all one unforeseen accident or diagnosis away from things taking a dramatic turn. Now, do I think that this battle with cancer is it for me? No…definitely not (And my Dr. doesn’t either ). But it has made me take a long look at my life and choices. What kind of a wife, daughter, sister and friend would I be if I am grateful for every day and recognize that tomorrow is a gift? What choices would I make differently? How can I live life more abundantly than I do now? It reminds me of the Tim McGraw song “Live like you were dying” that I always thought was cheesy (and it is)…but it fits.
Jonathan and I just got back from receiving the rest of my test results and the verdict is…the cancer has not spread…it has been contained within the breast region…and in the words of my surgeon “I can be cured”. Wooohooo!! Excellent news!
He did also mention that after the multi-disciplinary meeting last week they are recommending a prophylactic radiation treatment after the 6 rounds of chemo. I am not very excited about that but I have a few months to do more research and the decision is ultimately up to me.
It is a beautiful day in the Netherlands and we are going to go out and enjoy the last moments we have with Tim and Leah here.
If the couple we saw last week was us 1 month ago…I can only pray that the couple I saw today will be us sometime this year. I followed a man and woman out of the hospital today who were walking arm in arm and the woman had obvious post chemo hair. I assumed she must have recently finished a treatment for something and her hair was just starting to come back. All of a sudden she lets go of him, crouches down, does a giant leap with her arms to the sky and yells “Waaaahhhhoooo!!” Whatever it was, they obviously just got good news. I needed to see that today. I needed to see someone who has walked the road and was walking out the other side a survivor…of whatever she was fighting.
Today was a hard day and I am choosing to share my thoughts and experiences because I have been encouraged and inspired by other brave women who have opened themselves up to the internet during their process.
1. One of the major side effects I am experiencing after the mastectomy is a lot of swelling. The nurses are able to remove the fluid but it is kind of like a large water balloon that keeps getting inflated and deflated. I must add that it is a very odd and often uncomfortable feeling. I was planning on getting it “deflated” today but at 3 am I woke up soaking wet. My brain was still in the “I just woke up fog” and I couldn’t quite get my mind around what was happening. Oh crap. I sprung a leak!! Sure enough a small hole had opened up in my incision and was causing fluid to go…EVERYWHERE…soaking the sheets, blankets and pillows. Jonathan went to grab some towels while I try in vain to contain it. What a mess! Fortunately, the fluid is easy to clean because it is relatively clear and odorless…it just added a giant pile of laundry to an already emotional day. Side note: after I wrote all this out I am totally laughing because it was pretty comical. But I must admit it is much easier to laugh when the clean sheets/blankets are already on the bed.
2. I had 3 more diagnostic tests today – just to make sure the cancer hasn’t spread to my bones, liver and lungs. So far my experience with diagnostic testing is 0 for 1. I came in a month ago “just to make sure” nothing was really wrong…and there was no good reason why it would be wrong…and then my world turned upside down. So it was extremely hard to keep my mind from entertaining the “What if?” questions. What if they are positive? What if the cancer is global? The liver ultrasound felt an awful lot like the ultrasound that was used to check my breast. The technician would stop every few minutes to take a photo and make some measurements. What if she sees something? I wanted to ask every technician to give me their quick opinion to put my mind at ease. Last Thursday after we got our pathology results it was easier to visualize the next 6 months and draw a box around the specific type of cancer I am fighting. It gave me targeted information. What if that wasn’t complete? The box could now be bigger. Honestly, they probably will be negative but the questions will be there until I know for sure on Thursday.
I needed to see that woman jumping and yelling to turn my useless worry back into hope.
Thank you Jesus for showing me a woman celebrating a victory to help me let go of my questions…you knew I needed a positive end to this day…I trust you will continue to provide in big and small ways during this journey.
This is a pretty short post but I wanted to let folks know that I am going in for a few more tests tomorrow to make sure the cancer has not spread to my lungs, liver and bones.
Please pray specifically that these tests will come back CLEAN.
We have received quite a few fun packages and really appreciate people spending the time and energy to put something in the mail 1/2 way around the world. The surprises are thoughtful and really help to put a smile on our faces. See .
That being said the Dutch government is good at a lot of things but one thing they are exceptionally good at is taxes. There is a tax on everything and even though they are marked as “gifts”…there is an import tax on your packages. A big one…75% of your declared value of goods, which we pay when we receive them. The easiest way around this is to keep the declared value of the package below the 22 Euro cutoff point for the import tax. Obviously we know that there was no way for our family and friends in North America to anticipate this but we would really appreciate if you would keep it in mind when shipping in the future.
It has almost been 1 month to the day since we received the breast cancer diagnosis. The focus of your life changes so completely that it is difficult for me to remember what was normal before. The Martini Ziekenhuis is now familiar and walking the route to the Breast Cancer clinic is almost automatic. As we were waiting for our appointment to hear the pathology results I noticed another young couple across the room. They were us 1 month ago. He was sitting there on his blackberry scrolling through e-mails while she was called out of the room every 20 minutes for another test. I remember the anxiety of that waiting. I tried to keep myself distracted but until you know the outcome it’s impossible.
On to my results from today. After you get the initial awful news…everything after that becomes relative. We got some relatively good news today. My cancer has been diagnosed as stage 2b grade 2. In other words the tumor in the breast was 5 cm and had spread to 3 out of 11 of the axillary lymph nodes under my arm. It is also classified as a grade 2 with a grade 3 being the most aggressive. It was removed with a good margin so the surgeon is confident that we got it all. There are a lot of other medical details about it but that doesn’t need to go up on the blog. The normal treatment path is 6 rounds of chemo therapy. OK…that sucks but we were expecting some chemo. I will be going in for a few more tests next week to make sure it hasn’t spread further but we have good reason to be happy because the news today could have been worse. The one note our surgeon mentioned is that there was some metastasis into the blood vessels around the tumor and he was going to bring it up in a multi-disciplinary meeting this week to discuss whether prophylactic radiation may be necessary. But that will be after the chemo…and in my brain nothing I need to think about immediately. On our current radar screen is trying to fit an IVF cycle in before the chemo gets going. Small steps.
As we were leaving the hospital the couple from the waiting room was walking slowly down the hall. He looked like a bomb just went off and she was sobbing into his shoulder. Ugh…we’ve been there too. Everything in us wanted to give them a hug and say that we were sorry but we decided that probably was creepy. Instead we said a prayer for them and walked to the car. What a difference a month makes.
We have received so much support from around the world as we begin to navigate this new path and cherish it. But, after I got out of the hospital we received some notes with phrases like “So thankful that the big step is done” or “You are now on the road to recovery”. Just so everyone who is following our process is clear: Surgery was a big step but it was an easy (relatively speaking) step and it was certainly not “the big step”. The reason why I say it was easy is because I still feel like the same person I was before, obviously minus a certain something. I feel strong and healthy. My arm is sore and I have less energy while my body is healing but I still can and want to do everything I did before. That will change. The mountains will come.
This is not meant as a depressive post but a recognition of how we are preparing our hearts for the coming season. I fully expect to be on the road to recovery but recognize there are the “Alpine stages” between where I am now and that road. A great description about breast cancer is that the cancer doesn’t make you sick…the treatment does. And you go through it because you recognize that the treatment is necessary to heal you but it can kick the crap out of you for a while. So, as we look ahead making it through Chemo is “the big step”.
While we were at Alpes d’Huez I spent a lot of time looking at the mountains. I had almost forgotten what they look like living in the flat, flat, flat north Netherlands. And the Alps are majestic with steep peaks and valleys that spread out on all sides. It made me feel very small but thankful that I know the God that created them…and as we begin the ascents…I know where my help will come from.
A song of ascents.
1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the LORD,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The LORD watches over you—
the LORD is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The LORD will keep you from all harm—
he will watch over your life;
8 the LORD will watch over your coming and going
both now and forevermore.
I was finally released this morning to return home. Thank God!! I have no complaints about my time at the Martini Ziekenhuis, they were absolutely wonderful to me, but it is not home. I will miss the kind ladies who would stop by my room every couple hours asking if I want a cup of tea or a cookie. They would laugh at my broken Dutch but would always tell me I’m doing great. I will not miss the dry Dutch “broodjes” for breakfast and lunch…everyday…and by broodjes (sandwiches) I mean flat dry bread with margarine and cheese. I don’t believe I will ever embrace this Dutch cultural phenomenon.
I am healing well but am still tired. My arm is sore and I have limited mobility but with exercise that will come back. Our next appointment will be on Thursday 15 March to lay out the treatment path. Until then we are going to focus on resting and enjoying the time we have with my mom and sister in town.
Several months ago Lynnea and I started planning a ski/snowboard vacation to Alpe d’Huez, France. Two of our good friends from Israel, that live here in Groningen, invited us to join them and some of their friends on a six day trip of epic winter sports in the French Alps. Not wanting to pass up this great opportunity to experience a new culture and a new language (both French and Jewish/Hebrew) we signed up immediately. Of course when Lynnea’s diagnosis was given to us we thought that there was no way we would be able to go to France. After consulting with the doctors they thought it would be in our best interest to go and get some fresh Alpine air before Lynnea’s surgery. Instead of six days on the slopes we decided it would be best to only ski for three days. This would give us a day and half to get to the south east part of France by car with our two friends. Instead of coming back with them at the end of the week, we would take a bus from the ski resort to Geneva, Switzerland and take a fifty minute flight back to Amsterdam. So with our plans amended we went and spent four warm sun filled days at the Alpe d’Huez resort. It was a wonderful time spent soaking up the sun, exploring the mountains, enjoying wonderful homemade meals, and laughing with some of our new Israeli friends. The morning arrived when we had to depart. Lynnea and I had arranged to take a bus from the resort to the city of Grenoble, which is just over an hour away, and then transfer to another bus that would get us to the Geneva airport. As the bus started its decent down the winding two lane switchback road I began to see signs with bicycles on them and the name of a person next to it. At each turn I began to pay closer attention to these signs, until I realized that they were the names of famous bicycle racers who had won this stage of the Tour de France. I couldn’t believe it. I had no idea that the Alpe d’Huez resort was part of the mountain climbing stages of one of the greatest bicycle races on Earth. It was at this very mountain area where Lance Armstrong competed in a stage and would go on to win seven Tour de France titles after battling cancer. As Lynnea was burrowed into my shoulder trying to get some sleep I was struck by how fitting this place was for the two of us to visit. Not only is it a place where arguably, one of the greatest feats of human athleticism has occurred, but that it provides such a wonderful metaphor for the journey ahead for Lynnea and I. That this fight with cancer will be done in daily stages just like the Tour de France. That there will be days ahead which will be easy and feel like we are on flat ground. Then there will be days when we have to climb a mountain, because chemo has made her body sick. We don’t know how to fully prepare or train for these stages, but we do know that we have to take it one day at a time. And just like the Tour de France, we know we have hundreds if not thousands of people cheering for us and working with us to help fight. I have no clue how Lynnea’s body will respond to treatments, I pray that she will be healed fully, and that we will surround her in a year and call her a cancer survivor. That is many days and stages from now. What I am here to say is that stage one is complete! That yesterday the surgeon removed her left breast without complication. There is no evidence that the tumor was attached to the chest wall and the skin around the tumor was loose. That yesterday she slept, rested, and through most of the night she experienced little pain or nausea. This morning and this afternoon she was up walking around her room and down the hallway. These are all positive signs that speak of a healthy recovery, but the journey is still long.