1/28/14

Today was a great day! I recently had my 3rd chemo treatment and have not seemed to have the horrible days I’ve had in the past after treatments. I say this with caution as I am almost scared of jinxing myself as my symptoms can change so quickly from day to day. But regardless I am rejoicing in the good days!

We recently had friends that just welcomed their fifth, yes fifth, child in to world! How exciting! They got home from the hospital this week and were also making use of the same “foodtidings” website I had mentioned earlier for people to sign up and bring meals. Because we have been so blessed by this act of service I really felt the need to also contribute in this same way. I have experienced firsthand how much of a blessing this has been to our family and I was really praying for a good day so I too could bless someone else.

I felt myself craving the ability to bless someone else instead of always being the one blessed by others. Please don’t misunderstand that last statement. We are so, so very appreciative of all the blessing people have done for us and because of that, it has made me want to bless others even more! It has been hard though for me to feel like I can bless others with such little energy and a great deal of pain. I also felt myself craving the usually monotonous everyday tasks like grocery shopping and cooking. That morning I set my mind to the fact that I was going to make a meal for the Martins come hell or high water! I knew though, that it was not feasible to think I could do everything that it took to complete this task so I tried to set some doable parameters. I called on my gracious and wonderful mom for help! Of course she was very supportive and was willing to help in any way she could. She offered to pick up the groceries but grocery shopping was one of the tasks I have missed (?crazy I know!). But instead I let her watch Carter while I went to the grocery. I knew that lugging that heavy carseat in and out of the grocery would have just been too much. It was so odd getting excited to make a grocery list? We never know how much the little things in life mean until suddenly they are taken away.

Grocery shopping was a success. I came home and rested before jumping in to the next task (Energy Conservation/Work Simplification for all my occupational therapists out there!) I am trying to be smart about the energy I do have and that means taking frequent rest breaks between tasks and planning ahead the best way to spend my energy. I then took my time cooking the meal. I had planned for a simple meal (again trying to be realistic with my energy yet satisfy my need to contribute) and allowed mom to assist me with cooking while Carter napped. I then had mom deliver the meal. Basically this would not have been possible without mom!!! I am so grateful for her help!

All in all the day was a huge success! It felt great to not feel super crappy and to be a small part of blessing someone else. It just goes to show that blessing others can be contagious. Because of all the blessings we have received it has made me want to bless others even more. I wonder what the world would look like if we all went around blessing others with our kindness and acts of service.

The Blessing of Carter

Our little guy is now 3 months old. I'm amazed at how quickly he is changing and how big he is getting! He even started teething the other day! That has been a fun new adventure ... : )

We call him our blessing from God because there is not a doubt in my mind he was meant to be with us. Did I always think this? No, I doubted when I was first diagnosed why God would choose to put him in this horrible situation of a crappy cancer mess. I was then quickly reminded of ALL of the moments in his adoption story that could only have been made possible by God! And who am I to doubt God?! It is clear that Satan wanted me to doubt this situation along with everything God has done and can do. I now know without a shadow of a doubt that he was supposed to be with us for a reason! God chose us to be his parents and it wasn't by mistake!

I have tried to work through this situation several times in my head to try and best understand God's timing. Is that a waste of my time? Possibly, but maybe not :)

You first have to know that Carter was born 6 weeks early. If he had been born 2- 3 weeks later we would have known about the melanoma and likely had no other choice but to step away from the adoption process altogether. That in itself gives me goose bumps to know God's timing is perfect. The adoption process is not an easy or quick process and it was something we had poured our time, sweat and tears in to over the last 5 months. If Carter had been born 2-3 weeks later, my hopes and dreams of ever being a mom would have been pushed to the side, possibly forever. If Carter had been born 2-3 later it would have seemed like the entire adoption process was a waste and my dreams of ever becoming a mom washed down the drain. If Carter had been born 2-3 weeks later I can say with a great deal of certainty that I would have fallen in to a pretty deep depression. Again, God’s timing is perfect. Now, I realize you may be reading this and thinking of how selfish that is of me to want to bring him in to this situation and yes I hate that this sweet little boy has been thrust into this cruel world with his mom dealing with cancer. But I know he is well taken care of, he has grandparents that just can't get enough of him, a community that adores him and bajillion other people who love and support him more than he will ever know.

Because I have Carter, I am forced to get out of bed every day. This may sound easy to the typical person however with the amount of pain I have some days combined with lack of energy, this task becomes much more difficult. Without carter it would be easy to stay in bed all day and waste my day away watching the Game Show Network. Because of Carter I am forced to carry on my day, caring for him and his basic needs, a very purposeful and meaningful occupation at a time when I’ve lost so many of my regular purposeful and meaningful occupations. I have to put his needs above my own and I’m working hard to shield him from feeling the effects of this crappy cancer mess. I would be lying if I said this was easy. There are some days Carter gets extra time with his Nana, who loves him so much, so I can rest. There are some days the thought of getting off the couch to go make another bottle sounds exhausting. But because of my situation I rejoice more in the times I don’t have pain, when taking care of him seems easy and when I get to truly relish in being his mother.

Because I have Carter, I smile and laugh on a daily basis. He gave me some belly laughs the other day for the first time and I was convinced that was the best medicine for me that day :) The joy that he can bring me with just a simple smile is indescribable. Because I have Carter I get to be a mom. This may be the greatest of them all  Now I wish I could be a mom with lots of energy but we all have things we wish we could change. I am trying to be the best mom I can be within my circumstances. Becoming a mom is something I have always longed for and I am so grateful that I finally get to experience it. It may seem to the outsider that it sure did come at a crappy time but I am convinced more and more each day that it couldn’t have come at a better time. Carter is our blessing given to us at just the perfect time in the midst of a crappy cancer mess. Trust in God’s timing. It is difficult to give up control but at the same time it can be the most freeing thing you can do. When you relinquish control you may be surprised at how much better God’s plan and timing are, far better than you could ever have imagined.

Psalm 27:14 Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!

Isaiah 40:31 But those who wait on the LORD Shall renew their strength; They shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.

Psalm 37:7 Be still before the LORD and wait patiently for him.

COMMUNICATING WITH FAMILY OF A PERSON GOING THROUGH A SERIOUS ISSUE:

I am the Mom of Dori, Blythe, and Erin, and they asked me to write a guest blog on this issue. First let me say how proud I am of all my children and their spouses—I am truly blessed to be able to call them family!! They face issues directly and head on—much different than I sometimes do.

I have been in the family of an ill person several times in my life.

I have thought about how I relate to people during Dori's illness, because I wish I could be more receptive to people when I am hurting—I tend to want to go inward and run from people. I do know that when I encounter families of people with illnesses in the future that I want to learn from my present situation so that I can respond to others better in the future. Here is what I am learning from this situation:

1. Everyone is different and responds differently—and sometimes I respond differently from day to day depending on how tired I am. So I don't always know how I will respond when people ask about Dori or our family.

2. It is good to ask the spouse how they are doing—Dori's husband is carrying a load of being a new father, full time employee, caring husband, and trying to pick up tasks that Dori has done—he is doing a tremendous job with all of these, but it is a heavy load.

3. People ask out of concern and mean well —it is not the time to connect with people you are not close to—and people who just want to be in on the latest news will not be welcome!

4. The people I respond to best don't say a lot and they don't give me reasons for the illness or say how there is a good reason for everything—they just give me a hug and tell me they care or they ask what they can do for Dori and her family—and they certainly pray but they also provide tangible help for this young family whose life has changed dramatically. Some people may want to talk a lot about the situation, but I don't talk a lot to most people—and I choose the people I want to share information with—and they are the people who say little and just listen—my dance friend who frequently texts me asking what she can do and to let me know she cares; my neighbor who comes over and says “Here is some food and I just want to give you a hug”; my neighbor who puts a great-smelling flower in my home while they take care of my cats to let me know that spring is coming; my dance teacher who says to the dance team, “don't ask her a lot of questions, just give her a quick hug and tell her you are glad to see her”; or my neighbor who just came and helped me shovel my driveway (he didn't ask me any questions, he just showed up and started shoveling along side me).

5. Please don't say you know how I feel unless you have encountered a similar situation. An aunt of my late husband expressed it best when she said, “I thought I understood what you were experiencing, but I didn't, because when I left your home, my life returned to normal. Yours didn't!”

6. Sometimes I just want to talk about normal things and like it when I can talk to a friend about things we have always talked about before illness took center stage.

7. How much friends who care are appreciated during a time of family illness, and your care and concern are so appreciated—how I wish I could respond as I would like—but sometimes I just feel too raw to respond at all without crying. So please don't feel offended if I don't return calls or if I am tense. I do so appreciate your prayers and care for our family!

How To Be An Extreme Patient Advocate: Patient Advocacy is My Jam

Written by Blythe Hundley

If you could cure a loved one’s cancer by researching their specific type, Dori would be annoyingly healthy (like those actresses who say they prefer to eat clean food that they have grown organically themselves than any of that processed [said with disdain] food)…because I can tell you more about metastatic uveal melanoma than some medical professionals (not ones that I would recommend that you see…they don’t sound that smart).

But the cancer is here, so now it’s time to become an advocate for your loved one. Note: EVERY PATIENT NEEDS AN ADVOCATE. Don’t believe anyone who says differently. [Side note: Believe that they may not want you to act in that capacity, and respond accordingly. Now is not the time to be offended...you’re not the one who is sick! Stop being selfish.] Every person/situation/illness is different, so some of these may not apply to you in your situation. Just know that the more work you put in for your Dori (whomever it may be) the less work she has to do. And remember…your Dori doesn’t feel well, doesn’t have energy and shouldn’t be doing their own advocating. (While others may be calling you the patient advocate, know yourself for what you really are…the medical bitch. And own it. And know that you are doing exactly what needs to be done for your Dori.)

Top Five Ways To Be An Extreme Patient Advocate:

1. Go to physician appointments with your Dori. (Even better…schedule the appointments!) Take notes. Always. Take. Notes. Use the same notebook and allow them to have it between visits.

2. Send a calendar to family/friends who are assisting with care so everyone is aware of upcoming visits (so they can help with childcare and coordinate after-appointment assistance for the patient).

3. Research. Research. Research. By the end you should know every 12 digit gene mutation name and every side effect of every potential medication. (If you don’t understand these that’s okay. Find a guy you used to drink Natty Light with in college who has gone on to medical school or a girl who you judged in psychology 101 for wearing short skirts who is now a nurse practitioner. Make them explain things to you. Don’t feel guilty about this…people love to talk about what they know.)

4. Make friends with people at medical appointments. Your Dori may not feel well enough to show their sparkling personality. It’s on you now. Make friends for her. Make people remember both of you so that when you call later people want to take your call. This makes follow up so much easier.

5. Be pushy for your Dori. This may sound contradictory to #4 but they can work well in tandem. Pushy comes in handy when dealing with insurance companies and schedulers. If you get someone who is not budging, kindly thank them for their [not] help and hang up. Call back. Most scheduling departments and insurance companies will have another person answer your call and 50% of all people are less dickish to work with. Persistence is key.

Besides these five tips, the best advice I can give is to have honest conversations with your Dori. For us, these have included such gems as, “I can’t believe I am holding a bag with this much of your hair in it…how is there still some on your head?” and “Your wig on my kitchen table looks like a dead animal.”

This may be a plot twist you didn’t see coming, but isn’t that always what makes the book more interesting? For all of the sadness this has brought us, it has brought us the opportunity to spend so much more time together than we would not have had otherwise. Do you know how many more games of 7 Wonders we have been able to play because of cancer?? Sure…some of them have been in the hospital and now my cards are covered in MRSA; but the quality time has been worth it. Do you know how many more times my nephew has been a part of my pretend gluten-free cooking show while I’m trying to invent ways for his mom to get vegetables that don’t make her post-chemo nauseous? Do you know how much more often my brother-in-law and I have been able to bond over our shared love of food? The real gift is in the opportunity to show someone how much you love them by acting in the exact capacity they require at this moment. This book isn’t finished yet…we’re all pulling for the heroine, but the chapters in the middle of the book are always the best!

Why is it so hard to let people help?

Why is it so hard to let people help?

This question is still perplexing to me but I'm beginning to work through this dilemma but I also hope this gives the outsider a better understanding of it as well. We have been completely surrounded by wonderful family and community throughout this entire journey who have been very eager to help in anyway they can. The question is, how do I let them help? I have found it very hard to find ways to let people help us in some respects.

Let me start by talking about an easy way we HAVE been able to let people help us. Our amazing church community has supported us through bringing us delicious dinners just about every other night we've been home! They have used a really easy and helpful website called FoodTidings.com. This site makes it easy to sign up for a night and see when and what others are bringing.

This has been beyond a blessing!!! I can't tell you the last time we made a dinner! This has lightened the load for both Matt and me with one less thing to worry about. We have saved on our grocery bill and been able to eat home cooked meals as opposed to junky fast food! It was frustrating though when I had my 3-4 day spell of only being able to eat peanut butter crackers and apple sauce(??? I know,random) when I knew our fridge was full of delicious food that I sooo badly wanted to eat but at least I knew my husband was fed and didn't have to cook it himself. This again has probably been the easiest way to let people help us and what a blessing it has been!

Another way we have been blessed is by the incredible gifts people have given, whether it has been money, gas cards for driving to and from Columbus, walmart/target gift cards, diapers, wipes and formula for Carter! This has been such a huge blessing that brings me to tears just writing this as we have yet to buy diapers for Carter and the entire top of his closet is full of diapers with varying sizes! We have been sooo very blessed by community, family and friends it has been overwhelming in the best way. It has also taught me how best to help others in times of need and to help others more than I have in the past because I now have experienced first hand how much a blessing it is.

I've had many people say "let me know if you need anything" but why is it so hard to call upon people? I found that my independent nature does not lend its self easily to letting people help. I would never wish to ask for help and someone put there own obligations on hold for my needs. I'm constantly afraid of putting others out because, lets be honest, we all have our own busy lives with our own families and plenty of things to do. I know this sounds unreasonable but I would hate to be a burden to others. I am trying to get better at letting people help because I know I am robbing them of an area where they can serve but it is definitely a work in progress. Not as easy as it seems.

I've had many offers for people to take our laundry home and return the next day with it clean and folded. I'm sorry, I just have a problem with someone else washing my underwear? :/ is that my pride getting in the way? Would you let someone else wash your underwear? And I could go through it all and pull out my underwear but then did I just create more work for myself? It's been an interesting internal struggle.

Another way people have offered to help is by cleaning my house. This I seem to get unreasonably uptight about. The thought of me sitting on the couch while others labor in my own home over my own mess brings me extreme anxiety and guilt. If I had the energy to help along side of them that would be less anxiety provoking for me as I feel like I would at least be helping to some extent but I know that I don't. I realize that anxiety and guilt are not pleasant emotions and ones that God does not wish for us to have therefore I am working to push those emotions aside but it isn't always easy. And then there's that small part of type A personality that comes out because you know you do things a certain way and if someone is willing to give free labor you certainly can't correct them to have it be done your way. And sometimes the thought of just having to explain what needs to be done and where things go sounds exhausting which likely I'm blowing out of proportion. And lastly you have the factor of having to be sociable while they are in your own home. That sounds awful I know, but having little to no energy combined with my introverted personality sometimes seems like the most exhausting part of if all. Who wants to have to say, "I know you're here to help clean my house but please don't talk to me because I just don't have the energy"? No one, because that is not acceptable in our society and rude! For those reasons I have avoided letting people help in those ways and sadly to say in partly due to my pride.

I was able to share this and talk this over with the wonderful girls in my small group who I feel very comfortable around. I know now after 2 chemo treatments that the week after my treatment seems to be the worst for my energy level therefore I will be letting them come and help, even if it's to watch Carter while I go nap.

I realize that it is a blessing to let people help. They want to help and who am I to take that opportunity to serve away from them? Although very hard, I am learning that I need to push my pride to the side and let people help more. I hope this post helps outsiders to better understand the patient's perspective as well. I'm not trying to be rude if I haven't accepted your help, I'm just trying to figure out the best way to let people help.

How are you? The Loaded Question

How are you? The loaded question.

This is a question I get often. Its a loaded question that can be short or very long winded. My response depends on a few things.

1. My audience: Do I think you really want to know? Usually I find that people genuinely care and want to know. Do I feel comfortable enough with you to be vulnerable in how I am? But I have found that this is the automatic question that most people ask. I have also been surprised at some people's faces when I haven't responded with the quick cookie cutter answer of "Oh I'm good!". I can quickly tell by their response of looking away or their body language that they weren't prepared for a REAL answer to their everyday question. This I have found very frustrating. Don't ask me how I am and then not care to know the real answer! I would feel like a fake to paint an illusion for you if I just always responded "oh I'm good".

2. Do I have enough energy to talk about it? Most of the time I am fine with sharing how I truly feel but there are some days I literally don't have the energy to talk about it. Especially having the same conversation with person after person after person. Therefore my response to this question could vary depending on multiple factors. Be prepared :)

I have found my go to answer is, "It depends on the day. Today I am having a ______ day. I just have to take it one day at a time because I never know what I will have to battle that day".

So I hope by sharing this that you think twice before asking this loaded question to someone going through something tough. Be prepared for the not-so-cookie-cutter response and be prepared to listen. And don't be offended if they don't open up and share in depth details of how they are doing. They probably aren't in the mood to share or just don't have enough energy. Be prepared.

The Past: The Back Story

The Past: The Back Story.

I grew up the youngest of three girls, with two loving parents who, by the time I arrived, had it all together :) We lived way out in the country and I spent most of the time out on our six acres playing 'little house on the prairie', helping dad in the garden or catching crawdads in the creek. Mom always cooked dinner and we always ate around the table. We also spent a great deal of time at church where we were very involved there. It was a very happy childhood with many good memories. However it did have its rocky times as I grew older.

At the age of 7 my dad was diagnosed with ocular melanoma. This was a very rare and dangerous type of cancer found in the eye. He had his eye removed and had a prosthetic eye. 4 years later the cancer returned in his liver. There was very little treatment for this at that time and for the next 6 months we slowly watched our once healthy father become emaciated as the cancer took over. At the age of 11 I lost my strong, loving dad as he went on to dance and sing in heaven.

I graduated from high school in 2005. Started college that fall. And that October was diagnosed with ocular melanoma myself. Luckily the specialist for that type of cancer was in Cincinnati. I then had surgery where they placed a radiation plate on the back of my eye ball, sat in the hospital for 4 days while the radiation worked and then had surgery again to remove the radiation plate. Luckily that was the end of my treatment although leaving me blind in the left eye with little to no depth perception.

I spent the next 8 years finishing my bachelors, then masters degree, marrying the man of my dreams, buying our first house, finding amazing community through our church, getting my first real job as an occupational therapist and most recently adopting our wonderful son in October 2013.

The adoption was a crazy whirlwind of events. We started paper work to begin the adoption process in June of 2013 and just 5 months later got a call that a beautiful baby boy had been born in Alabama. 24 hours later we were on our way to Alabama and stayed down there for the next 10 days! (Of course that is the super short version of our adoption journey!)

November 22nd of 2013, I was diagnosed with metastatic melanoma found from a lump in my breast. It was determined that it was in both breasts along with several places in my bones. I now have chemotherapy every three weeks.

This is my journey of coping with cancer.

1/19/14: Thankful for Each Day

1/19/13 Thankful for each day:

I've had a few good days in a row! Hooray! Now don't get me wrong, these good days still included mild pain and off and on nausea but I'm getting better at knowing when and what to take in my, now very large ,medicine cabinet which definitely helps. But today I was able to go to church, visit with a friend (who was gracious enough to drive all the way across town) and I even attended the end of youth group! It was nice to have a somewhat normal day and just not to feel super crappy.

Every day is a new day and I never know what the day will bring. I may have a new place of pain, feel exhausted at basic daily tasks or feel nausiated at the thought of any food. But it also forces me to be more thankful for the little things! Thankful for the times I know I'm bonding with my child and getting time with him that I would not have had other wise. Thankful for days where I accomplish a shower and a few household chores. Thankful for when I just feel filled with joy instead of overwhelmed and discouraged. The things I always used to take for granted. A new perspective on life that I am very thankful for.

Again don't get me wrong, I am not this all the time, positive, 27 year old, new mother living with cancer! I have plenty of bad days where I just need a good cry because cancer sucks! It sucks being stuck in this "sick role" all the time. It sucks being a sick wife and a sick mom. It sucks watching my wonderful husband constantly do extra stuff around the house to pick up my slack while still working full time, being a husband and a new dad. It sucks not being able to do the things that were so easy and that I once enjoyed. But I feel this disease is forcing me to think more, be more creative and find new occupations that are meaningful and purposeful yet doable (which probably isn't a bad thing). I don't have a long list of those yet but I'm positive it will continue to grow over the months.

So I am definitely learning to be thankful for the small things and rejoice in the good days because there sure are plenty of bad days in between. It's a one day at a time ordeal that I'm learning to cope with.