GI Jane

I was reminded today that I uploaded my post shave photo on Facebook but family and friends following the blog didn’t get a chance to see it. So, here you go:

I decided to do it the day before I started chemo because on my particular cocktail (TAC) I will lose my hair.  All the Dr.’s agreed that out of all the possible side effects this was pretty definite. Shaving it off felt defiant. Like, you’re going to take my hair cancer? Fine, I don’t care…I’ll just cut it off anyway. It was cathartic and empowering and I’m glad I did it. Afterwards I watched Demi Moore in GI Jane and felt pretty bad ass. Now if only I could do a one arm push up. :-)

Jonathan is working on a photo gallery to publish more images of the process which will hopefully be up soon.

Blessings,

Lynnea

You just have to be…authentic

It’s been one week since my first chemo infusion and I am beginning to experience some of the fatigue and “chemo-brain” side effects. I apologize in advance if this post comes out rather incoherent it has been difficult to string together complete thoughts recently.

When I was in the hospital last week for the infusion there were 3 other women in the room with me. One of them was elderly and in pretty bad shape so she just kept to herself with headphones and the TV.  But the other 2 women (Mirjam and Hilde) were in their late 40’s and pretty friendly. The chemo socializing process is interesting. You are trapped in a room with complete strangers for hours and the only known common ground is that you all have cancer. You exchange some pleasantries but eventually the conversation turns into what kind of cancer you are treating, the particular chemo cocktail you are receiving, the side effects you’ve experienced and how you’ve managed them.  Mirjam was experienced. This was her 3rd infusion and she knew the ropes. This was only the 2nd infusion from Hilde and from what I could gather from their very fast Dutch conversation she had a pretty rough go after the first one.  It was all new to me so I didn’t say much…plus I couldn’t because my Dutch is not that good.  At a certain moment they were kind and switched the conversation to English to get our story. It always starts with the same question. “If you don’t mind, can I ask how old you are?” and then my responses go… “yes, young”…“yes, it was quite a shock”…“no, there’s not really a history in my immediate family”.

Jonathan and I spent a little bit of time talking with Hilde and her husband and it seemed like they were dealing with a lot. The last few years had been stressful and then to top it off she was diagnosed with cancer. We listened and it seemed by their tone they were trying to impart some words of wisdom to us. Her husband said “Take it from people who have been there you just have to be positive.” He even wrote me a note as they were leaving that said:

Where there is positivity there can’t be negativity

Where there is joy there can’t be madness

Just live for the day

I appreciated them trying to lift our spirits and give advice…but I don’t like people telling me “You just have to be positive”. At this point I don’t HAVE to be anything but authentic. If I’m positive I’m positive…if it’s a bad day it’s a bad day…if I want to yell I’ll yell…and if I’m mad I’ll be mad. If we try to judge and suppress all the negative emotions they will just get buried inside and we will be stressed out about how we should be more positive. I do believe there is a power to positive thinking, but it is a balance between forcing yourself and being OK with just sitting in the messy emotions for a bit. Of course there is a whole other post about not getting completely consumed by negativity and learning how to let go…but again it’s a balance.

So friends, here’s my advice you just have to be authentic.

Lynnea

Update Chemo round #1

Welp, I survived the first round of chemo with fairly minimal side effects…so far. 2 HUGE ANSWERED PRAYERS:

  1. The fact that I was able to start treatment. I had a 101F/38.2C fever the day before and if it stayed that high my treatment day was going to slip. I got a good night’s sleep that evening and woke up feeling much better and got the green light to start.
  2. Got the IV on the first go in my hand. Awesome! I was drinking a ton of liquids beforehand and they put a hot pack on my arm which I’m sure helped a lot. Plus I think I made the nurse more focused because of my slippery veins. :-)

But that was just the first part of the long, boring day. It was in my right hand so I couldn’t do any journaling or crocheting but I got a lot of reading done while the chemicals drip, drip, dripped into my system. I wore my cozy pink bunny socks (with the wide angle lens makes my feet look like pink skis) and wrapped myself in the beautiful quilt my mom and sister gave me to have some love from home. I had no problems with my veins burning or any other discomfort. Poor Jonathan was by my side for the the whole 5 hours in a super uncomfortable chair but he was a trooper.

I am on the strongest dose of anti-nausea medicine and that also seems to have done the trick so far. I am still drinking a ton of liquids and eating small meals but outside of an occasionally queasy stomach it hasn’t been so bad. I understand that the effects are accumulative and this is the first dose but I’m taking my blessings when I get them…one day at a time. I have my “chemo physical therapy” tomorrow to help keep my strength and fitness at a good level during treatment and I am actually excited to go.

Thank you everyone for your prayers and positive vibes during this…they help a lot.

Lynnea

 

Reluctantly Pink

I don’t really like pink. In fact, I might even say I dislike it.  There is no real reason why its just never been my color. Maybe it has something to do with being a hardcore engineer :-) or maybe because I was born in the 80’s and saw so many different horrible shades that I developed an aversion to it.  I can’t ever remember liking it…except for Barbie’s pink corvette. She always seemed to have a way of pulling it off. In general I’m OK with disliking it and have normally left the pink wearing in our family to my rock star sister-in-law Sarah and her fabulous daughter Jadrianne.

But, after I found out I had Breast Cancer it seemed like I saw pink everywhere and even opened myself up to purchasing a few things. Gasp! People have told me that I don’t HAVE to like pink now…I know, and I still don’t really. But the color reminds me of all the women who have gone before me in this fight. It is comforting and sometimes feels like armor against the anxiety of the unknown. I don’t know how my body will react to chemo. There are a ton of scary potential side effects…I had to go to the dentist last week to make sure my teeth won’t fall out. I don’t know a single person who is excited for chemo and says that is fun. So, I am certain it will be rough and am bracing myself for some tough days. But I am not the first and draw strength knowing that there are many people in the same position I am. I can and will do this one day at a time.

That being said I got the call this morning for my first of six chemo appointments. It will be this Thursday at 10:30 am Amsterdam time. I have been told it will take 4-5 hours because they give me quite a cocktail of different drugs. For you medical folks out there I am on the TAC regimen (DoceTaxel, Adriamycine, Cyclofosfamide). And will now receive an IV dose every 3 weeks.

This is when things will get heavier and we appreciate your prayers. Please pray specifically for:

  • A good night’s sleep on Wednesday…no anxiety
  • Getting the IV started on the first try. I have extremely difficult veins and can now only use my right arm for blood draws and IVs. After the IVF and other blood tests my right arm is extremely sore from getting poked so many times. (Most people need a couple tries to get it)
  • Minimal side effects

I choose laughter

Everyone handles grief and disappointment in his or her own way. It is hard to anticipate how you will react until you’re getting kicked around by shock, anger, sadness, frustration, anxiety, helplessness, loss…just searching for a solid emotional ground to land on.  Fortunately (or unfortunately) my family and Jonathan and I have already had a few turns on this ride. We know the benefits of being present with your emotions and taking things one day at a time. Something my mom said to me after we told her was “It feels bad to say this, but I am good at this. I know how to square my shoulders and walk into the storm.” The last 2 posts we put up have been describing some of the things we can’t control in this storm. I want this post to be about the empowering choices have made to find joy. Before we could make any choices we had to internalize these 2 statements:

  • We will not be in denial but will recognize this as our new reality. This is happening.
  • Within our new reality we will claim as many opportunities as possible for life, laughter and fun – Cancer takes a lot but we will not allow it to take everything

On to some of the choices we have made:

1. We did a boudoir photo shoot. It was something we had talked about but never actively pursued because we had time…until we didn’t.  It’s not that we thought the future was now black, but just after the surgery/treatment everything would now be different and we wanted to capture this current moment in images. We had been saving some money for a trip we now couldn’t go on and decided to use it to hire a professional and couldn’t have been happier. We were blessed with a Google search that turned up Lesley and Adley Studio  who arranged the most amazing shoot in only a few days.  Seriously, it was 1 week from diagnosis to the shoot…fortunately there was a good make up artist because I still had bruises from the biopsy. But it was perfect and we couldn’t be happier with the images! Obviously, most of them are not for public display but here are a couple breast cancer statement images that are fun.

 

 

 

 

 

 

 

 

2. After we got the diagnosis we had a “Kick cancer’s ass party” at a local pub with some friends here in Groningen.  It was a ton of fun because we have awesome friends. It was also symbolic because we were not going to be quiet about what we are going through and will party when we feel like it.

3. We had already planned a week ski trip to the French Alps that happened to fall right before the surgery and even though we couldn’t go on the full trip we made the effort to at least enjoy 3 days. It was beautiful spring skiing weather, and while the snow was a bit slushy the views and alpine air were unbeatable.

4. I have done more shopping recently than I normally do. There is something about having some fun new clothes and knowing you look good to lift your spirits. I bought a few dresses with wild busy prints and some awesome new boots that I wear almost daily. It helps me walk out of the house with a smile on my face.

 

 

 

 

 

5. Last week I dyed my hair a red/purple/brown color. I figured why not? My hair will be gone in 1-2 weeks and now is the opportunity to try something I never would have had the guts to do before. I walked into the drug store picked out a box and voila! I think it turned out awesome and it is admittedly not quite as red as this picture makes it look but still a big shift from my natural color. I have been asked whether it will now be harder to shave off…no way, because I never would have done it otherwise.

 

 

 

6. I will shave my head. I haven’t done this yet but rather than letting chemo take my hair in chunks it will come off with a razor. It feels more empowering to choose when and how it goes rather than just letting it happen.  And also, I have an awesome friend in the Philips grooming department who made me my very own custom Breast Cancer Pink balder complete with a ribbon at the bottom if you look close. IT IS AWESOME! I think the Philips marketing department should pick up on this.

 

 

 

7. I am learning to knit and crochet to keep myself busy during the chemo/radiation process. So far I’ve made 3 hats and a poncho. Not everything has turned out exactly as I have planned but it is fun to learn and experiment.

8. The IVF process was also a choice we made and obviously it did not go quite as planned it still helped us to feel like we were able to do something for the future. We would also choose to do it again if we had to do it over.

9. I have continued to run/exercise as much as my body will allow. And I have signed up for a chemo exercise program to hopefully help me keep some fitness level while my body is undergoing treatment.

Thanks if you made it all the way to the end of this. :-) It was a long-ish one.

Blessings,

Lynnea

Processing through disappointment

This week has been disappointing. If you read the beautiful post my husband put up on Sunday you know that we completed an IVF cycle to hopefully give us options for a family in the future. We found out on Monday that only 3 out of the 12 eggs were ready to be fertilized and only 2 out of the 3 were successfully fertilized and will be cryo preserved. Two is a much lower number than I was expecting and given the success rate of a live birth after “thawing out” it feels like a zero. This was the first time I really accepted infertility as a possible outcome of the treatment and was crushed.

I spent most of Monday being very sad. Sad that we have to face this. Sad that our future is so uncertain. But mostly sad that there is nothing more that I can “do” except wait 5 years and hope everything comes back online.  The IVF process helped me to feel proactive in securing our future and it was empowering to have this choice. But as I have been reflecting on the past several weeks I realized how quickly my faith shifted from praying and believing God will heal me completely to putting my trust in a Dr. with a test tube and microscope. Now don’t get me wrong, I don’t believe that you either have to choose faith or science. I think they can happily co-exist and support each other.  But my faith in God as my healer needs to be first. I realized that I had mentally put all my eggs in the IVF basket (I figured that was an appropriate idiom…cue comedy laugh track :-) ) and was brought to my knees when it did not work out the way I was expecting. It felt like all hope was lost but God is helping me to refocus my faith and restore my hope in Him. Miracles do happen. But, it is difficult to maintain faith/hope in this aspect of the future because it feels very intangible and far away…I suppose only time will tell.

Blessings,

Lynnea

A Dozen Eggs

Four Years ago on a dreary rainy Easter Sunday in Seattle I pulled my car up in front of the house where Lynnea was living at that point in time.  In the back seat of my car I had two towels, a bowl, and five years worth of cards, letters, and notes that she had given me.  In my pocket I had a box that contained a single solitary White Sapphire, which is now the center stone of her wedding ring.  Before getting out of my car into the pouring rain to make a dash for the front porch of the house, I pulled the box out of my pocket, and flipped it open.  For ten very long minutes I stared at the Sapphire and thought about the last five years of the dating journey Lynnea and I had been on.  Conjuring up times spent laughing, of our first date, of the mistakes we had made, and conversations that had taken place that had brought me to this point.  For what I was just about to do was ask Lynnea to marry me.  But before I could do that I needed to sit alone in my car with the rain beating down and feel the weight of the question I was about to ask.  Can we merge our dreams and goals for the future, I wondered?  Four years later I find myself reflecting on that decision.  I don’t find myself regretting my marriage proposal, but over these last two and a half weeks, I have found myself sad and angry.  The question of course is why these emotions?  The short answer to this question is that I want to be a father.  The longer answer requires a little more explanation.

When I asked Lynnea to be my wife that proposal brought with it my dream of one day having children.  So why is that possibility in jeopardy?  One of the unfortunate side effects of a young woman’s battle with cancer is that her reproductive cycle needs to be put into a menopausal state, or in the words of our Oncologist, “it needs to go into hibernation for the next five years.”  Along with the suppression of Lynnea’s hormones that dictate her monthly cycle, the chemicals poured into her body, both in high doses over the next 6 months, and low doses for the next 5 years, could do permanent damage that may not allow for her to ever get pregnant.  This is why Lynnea and I have chosen to spend the last two weeks attempting to create a back up in the event we can’t get pregnant in the future through natural methods.  While my part in this back up plan involves a donation into a cup, Lynnea’s has been a little more painful.  In order to gather as many eggs as possible, she was put on a ten day regiment of drugs that would stimulate the growth of her ovaries.  Every morning she would have to do a self injection and towards the end of the ten days it was two.  Along with these injections every two to three days Lynnea had to go in for an ultra sound, so the doctors could check the growth of her ovaries. This past Thursday it came time to harvest Lynnea’s eggs (this statement has brought us a few laughs, as it makes Lynnea sound as if she’s a chicken!).  The process of harvesting the eggs is truly amazing.  What the doctor does is use an ultra sound to see the ovaries on a screen.  At the end of the ultra sound handle is a long thin needle with a very small thin tube attached to it that has a vacuum seal to it.  The doctor then uses the needle to puncture the ovaries.  The painful part for Lynnea comes about because with in each ovary there a many follicles that house the eggs.  Each mature follicle must then be jabbed with the needle so that the eggs can be sucked up.  It wasn’t a pleasant experience to watch.  While the whole process lasted five minutes each time the needle was jabbed it sent sharp pains into Lynnea.  Even with the pain killer that she was given the puncturing could still be felt and the signs of pain were very evident on her face.

After the egg gathering was finished Lynnea and I were taken to an adjacent room where a TV monitor was turned on.  That monitor was hooked up to a micro scope and we got to watch as another doctor sorted through the fluid to find the eggs.  In total they were able to get twelve eggs.  All twelve of these eggs will then be attempted to be fertilized to create embryo’s.  There is no guarantee that our dozen eggs will be turned into embryo’s.  The next step is then to freeze the embryo’s, which could further reduce the number.  Tuesday we will find out how many survived to be put into cryo-preservation.

My hope is that Lynnea and I never have to use the soon to be stored embryo’s.  That at the end of five years her body will not only be cancer free, but that her body will be able to bear children.  I know that there are other options available, such as adoption, if we are not able to bring a child into this world naturally.  But, right now, in these past weeks, I have come face to face with the fact that I want to experience the process of becoming a father.  I want to experience being a husband to Lynnea as she’s pregnant.  I potentially want the experience of putting my hand out to help deliver my child into this world.  The hardship of this particular aspect of our cancer journey is that we will not know for five to six years whether we can get pregnant.  There is also the very real possibility that if we have to use the embryo’s Lynnea’s body might reject them.  There are so many unknowns about the future, with this I am very comfortable.  However, that doesn’t do anything to alleviate my present sadness or anger over my fears that our hopes for having biological children could rest on twelve or less embryos.

Blessings to you all on this Easter Sunday… He has risen.

-Jonathan

Good Friday

Here in Groningen every year for Good Friday they have an amazing flower market. Both squares and side streets are packed with vendors selling potted plants, cut flowers, trees, shrubs, seeds, herbs…everything you can imagine growing in your home or garden.  It is an explosion of color, people and pollen.

Grote Markt - Groningen April 6 2012

It is a very festive atmosphere and always fun to wander around in.  I don’t believe it is meant specifically as a celebration for Good Friday but it is always a bit odd for me to be contemplating the significance Jesus’ death while being surrounded by such an abundance of life. I have been thinking a lot about Good Friday during this Lenten season and most significantly about how desperately Jesus wanted to avoid the cross but ultimately submitted himself to the path laid out for him.

Then Jesus went with his disciples to a place called Gethsemane, and he said to them, “Sit here while I go over there and pray.” 37 He took Peter and the two sons of Zebedee along with him, and he began to be sorrowful and troubled. 38 Then he said to them, “My soul is overwhelmed with sorrow to the point of death. Stay here and keep watch with me.” 39 Going a little farther, he fell with his face to the ground and prayed, “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” Matthew 26: 36-39 NIV

He prayed that prayer 3 times (on his face) before the guards took him away for the trial, conviction and ultimate crucifixion (the reason for Good Friday). The desperate plea for the cup to be taken has much more significance to me as I walked through Lent dealing with cancer. A difficult thing about the cancer treatment process is that you do a lot of waiting and anticipating for stages to come and pass. Jonathan and I had many conversations leading up to the surgery about how this feels like our Garden of Gethsemane. Where we so desperately wanted the cancer cup to pass us by and to not deal with the surgery, IVF, chemo, radiation, fatigue etc. It didn’t pass and the day came when the process started and we had to begin to walk the path. But our time spent in the “garden” transformed us because through the desperate, authentic prayers where we have cried out from the depths of our hearts…God met us, cried with us and helped us to know that he will sustain us. He knows and understands the anguish in our souls and is faithful to walk with us and carry us when necessary.  We all have things in our life that we wish would pass and roads that if it were up to us we would not walk. Our character is developed in how we choose to face these moments and our faith is deepened in how we involve God in the process. But it is never as clean or simple as these words make it sound. It can be gut wrenching, wall punching, curling up in a ball trying to avoid the world, crying to the point where there are no tears left, having your spirit crushed and not knowing whether you can continue forward…God still gets it…in Gethsemane Jesus’ soul was “overwhelmed with sorrow to the point of death”. He was in such distress that he sweated blood. But he was given the strength when he needed it to move forward…

I am thankful for the cross this Good Friday. I am thankful for Jesus’ process leading up to the cross and for his submission to God’s will. I am thankful that he died for me and that in two days we will celebrate his victory over death…and through that victory I can face cancer/life and not be afraid.

Blessings,

Lynnea