What To Say

Another warrior discovered her cancer had metastasized to her bones a few weeks ago.  Her doctor ordered a brain MRI and she received the results today that she has three lesions on her brain.

I do not even know what to say. I am sorry sounds like a death sentence. When I think of what I would want to hear, I cannot even imagine.

I think the most logical, honest, heartfelt response for me would be, “Oh Fuck, now what?”

Seriously…because for women who have breast cancer that metastasizes, it means life-long treatment. It means facing the unknown and every fear you have faced since your initial diagnosis has been realized.

One lady said she feels such peace now. She had spent years wondering if and when it would show up again; now she knows and can make a treatment plan and move forward.

I would like to think I would also feel that way; but I am not that strong. Oh, I would look that strong on the outside, of that I am sure. On the inside, and at my Mommy’s house though, I would be a mess. A puddle of mush.

And when it was time to get to work, I would get to work. Maybe I would be like that. I am glad I do not have to find out.

Being healed has brought me a peace I had before I ever heard that ugly word; Cancer. I am different though. I no longer am able to be naive about my mortality. I am no longer willing to let simple symptoms go for more than a couple of weeks.

What if I had gone to the doctor when I first felt pain in my left breast? Would that have changed my treatment plan or outcome? I never want to be that close to death ever again. So from now on, if I have a pain, a twinge, a feeling something is not right, I will get it looked at sooner rather than later.

I may be healed yet I still take medications on a daily basis. My body tried to kill me once, I will do everything in my power, to not let that happen again. As I still have one natural breast left; I am still at risk.

My risk for a new primary cancer in my right breast is pretty slim; I get that. I also get that it was pretty much a fluke of nature (if I believed in such a thing) that I had it in the first place.

So difficult to put yourself in the shoes of somebody receiving such devastating news; I am blessed that I can though. I am thankful I know her well enough to ask what now and have her know she can share the details with me, they will not scare me away and I will not tell her to eat more carrots.

To my stage IV warriors, my friends; this sucks, and I’m coming along for the ride. Hang in there and you do you.

Lord,

I pray for all the metavivors out there, those I know and the ones I don’t. I pray for their medical team to be the best, I pray that the treatment decisions are sound and successful. I ask for relief from any pain or anxiety as they live their new life.
I ask for a miracle, for radical healing as only You can do.
Lord give me strength and courage to continue to grow these friendships and not back away. To not fade.
I praise You for my healing, God. For giving my another shot at life. For allowing me to serve you with grace and wisdom.
Amen

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Emotions

Our shirts are finished. Team Kiss My Skates is ready for business. We have matching shirts, pants, helmets, and wrist guards. The front of shirts are adorned with 66 names of people who have or have had cancer. Some are in remission or NED (No Evidence of Disease), others are dealing with recurrence, and unfortunately we have lost a few.

Seeing my own name on the shirt along with my grandpa and my baby sister is killing me. I had no idea that seeing us together on this shirt would hit me so hard. It was a pure gut-check moment for me.

There was a brief moment when our shirts almost did not get made. Katie’s was finished and there just was not going to be enough time to get mine done. I told the friend of ours who was doing the shirts that it was ok. He had already gone above and beyond for us and the time he had taken to just get hers done was already more than I could ask for.

I told him it was fine if I did not have a shirt.

After he left, Katie asked if I was really okay with not having a shirt and try as I might; I could not hide my sadness. We started to brainstorm for ways to make me a shirt.

Little did we know, our friend had gone home and printed out a new sheet of vinyl letters for my shirt; saving the day.

When I skate with those names…I cannot even describe the power, the feelings, the drive. I have pushed myself so hard physically. Although I would like to say I have never pushed myself as hard before, it would be a lie. I would like to say this is the most rewarding thing I have ever done. That would also be a lie.

While I was doing chemo, I fought this hard (and harder) every day just to get through the day. I had to will myself to breathe when I did not think I had any strength left in me. I had to will myself to move my legs so I did not develop blood clots. I had to trust God when I was not sure I would make it, that I would wake up from a nap.

That fight makes all this skating look like child’s play. It also reminds me that I can overcome any obstacles. I have already proven to myself just how strong I am.

My biggest task right now is to not expect too much of myself on race day. It is my first marathon, my first time ever on this course. I truly have no idea what I am up against. I have told myself (over and over again) that my goal is just to finish the race. Anything above and beyond that will just be icing on the cake.

I would like to work myself up to eventually skate in one of the advanced waves; just for the fun of it. That may take a couple years, but it would be so worth it. Next year I want to skate more than one marathon.

I was bitten by the inline skating bug…and I like it.

Seeing the reactions of my friends in the chemo group has been so humbling and inspiring. I am skating not only for myself, I am skating for each one of them and they are all skating with me. Just as chemo would have been unbearable without them, I could not finish this marathon without their support. When I cross that finish line with Katie, we will be crossing with 66 warriors. We are each of those warriors, they are with us.

Lord,

As I focus on bringing the glory to You, wrap all these warriors in your loving embrace as they skate with me in heart.

Amen

 

Training

In August I skated 23 times for a total of 185 miles. Not bad considering I was unable to skate for 12 days last month. Those are the days I was in Canada with my friend and then my family. Of course the first morning I was back and ready to get back to skating…it rained.

About a week ago I knew I had to do some practice on hills. There are a few hills along the marathon route although most of them go the right way (a decline) there are a few that are backwards (an incline).

I have figured out that I can pretty much skate forever on a flat surface. I also know that hills nearly kill me. One evening I told Katie I was going to go up a very small incline on a bridge beside the trail we usually skate on. When I got to the top of the bridge I decided that I was going to try a park that has a very steep hill.

And that is when it happened. Mine and Katie’s lives were changed that night.

Every time we skate now we go up and down that hill a few times. It is a crazy steep hill. Steeper than anything we will encounter on the marathon route. It is a great workout. The first couple of times, I could not make it all the way up without stopping and would have to step off into the grass and catch my breath.

I bomb the hill, reaching speeds of 20 mph then trudge back up with every ounce of muscle and energy I can find. By the time I reach the top, my heart rate is in the 150’s. I let it recover…and head back down the hill again. Four is my maximum reps at this time.

Last night, we were to meet at the trail at 6:30…but I fell asleep on the couch (being back to work and having a routine is hard). I got there late, skated just over 4 miles before heading to the hill and then did four down/ups. I think it was on rep three that I almost fell coming up the hill and had to stop. Unfortunately it was near the top so I actually had to wait for my heart rate to recover a little bit before finishing the way up.

I think the five miles before heading to the hill is going to be the secret to our success though. Those were the some of my fastest miles ever…because I couldn’t wait to get to the hill.

Unfortunately there is a bit more traffic on the trail in the evenings and I am thankful that people are very courteous when it comes to right of ways. There are two older couples who ride bike and each time we passed they cheered us on. I told Katie I want THEM at the finish line.

And I know there are spectators along the route, and at the finish line; I am selfish…I want our own cheering section. People that know how hard we have worked to make this happen, what we have accomplished in just 88 days.

To the spectators, we are just two more finishers to cheer.

In our hearts, God has brought us here and given us this opportunity. Finishing this race means we have not only beaten cancer, we have WON. We have finished with each other and the 66 warriors whose names are on our shirts, on our hearts.

Each of those men and women who are listed on our shirts has been prayed for, has fought a battle that cannot be described with words. The warriors we have lost are not only written on our shirts, they are written on our hearts.

The privilege of racing for these men and women is so amazingly humbling. I can only speak for myself (but think Katie feels the same way). Skating with these warriors on our shirts gives me strength. It reminds me not only of how far I have come but how many never got the chance.

My friend Denise did not even get a full year between being finished treatments and her cancer came back in her bones. It was then less than a year and she was gone. It does not even seem real or right that this is how it works some times.

When we reach that finish line, I cannot wait to hold Katie’s hand and let out a huge victory cry! There are tears in my eyes just THINKING about what crossing that finish line means. I have a feeling the finish line tears may turn into an all out bawl…

We are going to come around that last corner…join hands and finish strong…for God…for the people on our shirts…for our hearts. I guess I really do not need a cheering section at the finish line when I know that we truly will not be finishing alone.

Lord,

I ask for your protection as the race draws closer and the emotions become too big for us at times. Give me the strength to be vulnerable and to give myself permission to feel all the feelings as they arise. I want to be able to process this all in real-time…not look back and wonder where the time went or what happened.
As we finish our training and complete our race, may the warriors on our shirts feel the same satisfaction that we feel.
God, I know without You, none of this would even be possible and am humbled to be chosen You to complete this task. To shout from the race track to the training trail to the hills how great You are has been my honor.
Thank You for your provision and your protection. Your faithfulness is amazing.
For the families who have had to say goodbye to their cancer warriors, give them comfort. Help them feel the love around them. Remind them there is no pain, no sadness where You are and that even though our earthly trials are sometimes harder than we think we can bare; we can bare them with You.

Amen

Done Dating: Part 2

My first Done Dating post was the announcement. This one is more of an explanation of how I got there and why I can be confident in my decision.

My friend Katie and I have only known each other for a little over a year. We met after the hard chemo was finished and I was healing from radiation and the after effects of chemo.

In normal circumstances, Katie and I never would have met. Her husband is a pastor of a church I had never stepped foot in and had never even been curious about stepping inside. Not that I questioned their church, I was just happy with the church I was regularly attending and very heavily involved with volunteering.

She started a MOPS group at her church and I was invited by a friend from Epiphany Station. I explained I have no preschoolers left and so a MOPS group was not really my thing. I was assured they were also a MomsNext group for mom’s with older children and I agreed to give it a try.

I was through what we thought was the difficult part of cancer, life was moving forward, and I was interested in social activities that were not overly time consuming. I enjoy group social activities that are regularly scheduled; especially if they include food and a craft!

Katie was very pregnant and we did not socialize much. We were familiar with each other but I would not have called us friends.

Then it happened.

I went to Rochester for my reconstruction in March 2016. I flew down on with Angel Flight Central and was scheduled to fly back with them as well.

I was released to fly home on Good Friday. With my appointment time and the volunteer pilot’s schedule, flying home Friday was not an option. Then the weather was bad for small aircraft travel and my weekend flight was canceled. I was heartbroken.

When I knew I would be going home before Easter I had visions of surprising my boys at church Sunday morning. With no available flight, my plan was crushed. I posted my heartbreak on Facebook and was flooded with messages of sympathy.

Then Katie said she would come and get me…she would drive to Rochester (384 miles) to pick me up and bring me home so I could surprise my boys and be home for Easter. This plan was coming together on Good Friday.

The caretakers of Nazarene Well House (where I had spent my post operative time) knew what was happening and they offered to meet up with Katie so that was it…they drove North and she drove South the day before Easter and got me home in time to surprise my boys at church Easter Sunday.

Our friendship has grown from there and she has become a best friend. She babysits our cats when we are out of town, I babysit her animals when they are gone. I can walk into her home as they start a meal and sit down at the table as if I was invited.

A few weeks ago when tragedy struck and four people died, she comforted me, she engaged me, she got me through. When I did not know how exactly chicken eggs were fertilized (she has chickens, I was curious) she taught me. (Note to self: Don’t ask if you really don’t want to know…I didn’t really want to know). When she needed help taking straw off her septic field, she put me to work. When my heart is rattled and confused and breaking and filling all at the same time, she grounds my feet.

This woman, a mere stranger just 15 months ago who let me carry her water and nothing else when we stopped for coffee on our way home from my surgery. The woman who understands my humor, who gets me, who loves to see me growing closer to Jesus and helps me through the tough spots.

This woman is why I know I no longer need to be on dating websites where men with questionable motives lurk. She is the reason I do not need to be searching for my life partner.

If God can bring together Katie and I, He certainly can bring together the man I will spend the rest of my life with. He certainly can make things happen without my assistance.

I thanked Katie for this the other day; telling her that our friendship gave me the understanding that I did not have to be out there looking for ‘The Right One’ when God already knows where to find me.

Lord,

Thank you for everything You have provided through Katie and her family. They are truly my family here with so many others.
I am so thankful that You have opened my eyes through her about the ways You work and that she has been able to show me just how much You can do.
For my future husband, I pray he also has a friend or group of friends who teach him lessons he doesn’t even know he wants to learn. (save him from the chicken stuff though if he doesn’t already know)
For all of my friends whom are now family; the thanks goes to You. I am eternally grateful.

Amen

Beyond Done

I am fuming today. I know I have said it before and I will say it again; I thought after treatment and surgery I would be finished with breast cancer and nobody thought to tell me any different.

The previous estrogen modulator I was on caused such sever joint and muscle pain it nearly crippled me. Add to that ovarian suppression and I was in a chemically induced menopause that my body decided to mutiny against.

I have been on a medication vacation since January. The pain has decreased significantly but is still prevalent.

Today I started on a new estrogen modulator, Tamoxifen. although tests show me to be a low – to Intermediate metabolizer of the drug, my doctors have decided it is better than taking nothing.

I asked for specific studies and the numbers may not sound big…but 13% is 13%. It reduces my risk of recurrence by 13%. My sons are nine and 12, my daughter 22. Thirteen percent is a pretty big deal.

Unfortunately, the risks are a crap shoot. On one hand, the medically induced menopause can lead to the same joint and muscle pain I was experiencing before. On the other hand many women experience an unparalleled moodiness from the drug. Yay

One friend of mine (also a breast cancer survivor) posted on my Facebook #HideAllTheKnives. That sounds encouraging. She stopped taking the drug because of the side effects. Sounds like ongoing compliance is hard to come by for any of these drugs.

Today I took my first dose. Because I am a low metabolizer, it is a lower than normal dose. We will reevaluate in 2 – 3 months. While I am trying my best to have a positive attitude the numbers and real life stories just don’t support it.

My ten year survival still sucks (less than 50%); as of now, nothing changes that. My five year disease-free time is the number these drugs seem to make the biggest difference on. I am working on wrapping my head around the disease free time in regards to the survival time.

Disease free time does not mean much if it is spend in agony. Survival time takes a crap if  it is spent undergoing treatment.

And that is where I am. My mother told me to listen to Mayo and do my homework; they saved my life once, they might know what they are doing still this time.

I just thought I would be done. Nobody warns you that you are forever a cancer patient, forever a cancer hypochondriac. Nobody warns you that the assistance stops when your hair grows back.

Nothing in this life has ever come easy…I guess I shouldn’t have even pretended it might.

UGH

Survivor Guilt

Today a family near me lost their young son to brain cancer. He was diagnosed in 2015. March  8, 2017 his family was told he had just 4 – 6 months to live.

On May 31 it will be the one year anniversary of the death of a friend who had cancer.

This weekend while cleaning the house, I found a pipe cleaner that reminded me of a man I met in Rochester while we were both undergoing radiation treatment during the summer of 2015…he’s been gone almost a year now.

And here I am…I am still here.

I was talking to the widow of my friend…

I just spent 5 minutes writing that sentence…I first wrote the wife of my friend…then realized she is his widow…but in my brain she is still his wife; yet she is also a widow. He has been gone for nearly a year and I am just now thinking about this.

So I was talking to my friend the other day who lost her husband a year ago and the anniversary is approaching and she is keeping herself busy. Their daughter is moving far away soon and she is worried. Although they always knew this day would come, she had prepared for this eventuality with her husband by her side.

Her husband, my friend, beat cancer. The after effects killed him. I told her that I am now dealing with the same thing. After cancer is much more difficult than chemo. People do not understand that though. They see me working, living life, growing hair and think life is great again.

Except it is not. It is full of a pain that is constant and here I am trying to have a normal life. People do not want to hear that I am in pain. I think they just do not know what to do or how to help.

I am still only able to work part time and even that is so difficult. This means money is an ongoing issue. I am trying to work, I am trying to live, I am trying to move forward, to move on, to get beyond cancer. Being reminded every pay day that I can only work part time and I may never again be able to support my children off of social assistance, is terrifying.

But I am alive…and many are not. So I feel terrible complaining. I feel so blessed to have come so far. So I say nothing except to very few people; usually the ones who I spend enough time with that I cannot hide it from them.

When I spoke in a small group last week about wanting to take another job next year because the boys will be attending school in the town where I work, so I am logistically able to work more hours.

“YA, RIGHT!” Came from a across the room from a great friend…and I wanted to cry…she is right. There is no way I can physically work more hours than I already do.

I want to provide my boys with a few comforts that most people see as every day items. I want to buy them new shoes without having to argue with their father about who can afford it (he makes $45k/year, I make $13k). I want to go out to eat when I just cannot muster the energy to cook.

I am trying so hard to move forward with every day God gives me. I should be thankful, I should be joy filled, I should be praising God for every minute of every day that I am on this earth.

Today though, I am telling you, this sucks.

Lord,
I don’t know Your plan for me regarding this and I’m not asking to know it. I just need you to know that I don’t understand it and I am sorry that I cannot always find the joy in each day. You know I try.
Help me get through each day with light. Help me see the light, help me be the light to others because I know I cannot see or be the light without You. You are light.
My eyes are open for you, to you.
Amen

 

 

 

Fear and My Legacy

Yesterday while talking with my pastor, he asked what my greatest fear at the moment was. I honestly shared with him that my biggest fear is that if my cancer ever comes back that my boys not be able to deal with it on their own terms.

A recurrence for me would mean stage IV which is terminal. This would absolutely devastate my ex-husband. He has so many regrets and emotionally issues surrounding our marriage and subsequent divorce that a terminal diagnosis would send him into emotional turmoil. My worry would be that the boys have to deal with my cancer on his terms.

I would also worry that a recurrence would take my ex-husband away from the church. Last Easter he began regularly attending the church that the boys and I have been attending for over three years now. He has even started volunteering and making connections within the church. I fear that if I ever have cancer again and he sees the church rally around me as they did last time; he would feel slighted…or something like that. Not that he would not want the people I know and love to support me, I think it just brings out a lot of his inner guilt and demons. If he pulls away from the church, my boys would lose out on the support that they would need more than ever.

My final, and most intense fear is that the boys do not see God’s grace and mercy at work through everything we have been through. I wish I had recorded what I told Matty, it was something to the effect of when I go out, I want their faith to be headed off a ramp…towards God. I saw his eyes widen…like he knew I totally got it.

The more thought I put in to it as my day went on today, I want their faith to be growing and taking a run off a ramp…not diving off a cliff.

I am not waiting until I have a terminal diagnosis to lead my children towards God. If that diagnosis ever comes, it will be God we turn to out of history and habit. When God is their go-to out of habit for things good and bad, I have done all I can.

For my entire life, that is my job. To lead them to Christ. To fill them with Christ. To model Christ.

Dear Lord,

As we go through the motions of everyday life, help me to guide these children to You. Show me how to point to You in every situation we face.

Help me to help them find you on their own. Help me to guide them in their own individual languages of love.

Help me to continue to meet their earthly needs and teach them the dangers of pride and shame and anger. Continue to give us opportunities to be the answer to prayers for others so we can recognize those same answers when they are our prayers.

Thank you so much for making me their Mom…for being everything they need and most of what they want (I am a mom after all…I can’t be their friend all the time).

Continue to surround me with people who know I am stressed and take the best care of me by sending creepy memes to my phone and Facebook. The Army you have surrounded me with is AWESOME! THANK YOU THANK YOU THANK YOU

Amen