Update: 6/27/14

Oncology Update

Written by Blythe Hundley

We had a long day at the OSU James Cancer Center yesterday so I thought I’d fill in for Dori today so she could rest enough to farmers market-it with me. The news was not a surprise, but still disappointing. Liver and lung tumors have had some marked growth, so her doctor decided to stop the targeted therapy and immediately begin a new chemo regimen to see if the aggressive growth could be slowed. The immune therapy had to be briefly stopped to reprecert through Cobra, but will continue in three weeks when she returns to Columbus to get another chemo treatment. The potential trial in Maryland (NCI) is not an option at this time; as she may not maintain during the pre-trial course of no treatment. The hope is that once the growth has been stabilized through chemo, the immune therapy will continue to work and we can begin to look at other trial options (one potential is here in Columbus). All of this beautiful new hair growth will fall out again, but we all know how well Dori can rock a naked head! Dori and Matt are still in good spirits and Carter continues to entertain at all times with a thousand different facial expressions. Continued thoughts and prayers (as always) are appreciated and cherished. Life’s every moment is a blessing so we’re going to go spend the next few at the farmers market!

Update: 5/16/14

Okay I'm going to make this short and sweet because I'm writing this from my phone and it is a pain to post from. But I wanted to give everyone a quick update. I had another Dr appointment in Columbus this past Friday. My Dr reported that the spot on my liver had grown but that the other spots in my breasts, lungs and bones hadnt grown in size.! Huge praise! I have been on this daily pill (targeted therapy) for about 2 months now and it definitely feels like it's helping. The past couple of weeks I have felt pretty good with more energy and better appetite. This is a huge praise because the older Carter gets the more active he gets and he is very close to crawling so that means I'm going to need even more energy to chase after him. We also got approval for the immune therapy drug so we were able to start that on Friday. It's an hour and a half infusion through my port that I will get every 3 weeks. That will build in my system over the next 12 weeks. Unfortunately I'm having a reaction to the new medicine (red bumpy itchy rash) but I've got a call into them to see what we can do about that. We will also be calling the trial in Maryland to get more info on that. Thank you for all your continued prayers. It has been so great to feel better, have energy and just not to feel so sick! Please continue to pray for these medicines to continue to help, for me to continue to feel good and for this rash to go away. Thank you so very much to all who have helped and supported us! We continue to be blessed by amazing family and community support! We can not thank you all enough for all your help!

Update

I had a doctor appointment yesterday and it went fairly well. About 3 weeks ago I started taking a daily pill, which is considered targeted therapy. I have seemed to have had good results with it so far with nearly no pain, which has been encouraging. I still have days with fatigue and low energy but overall I’ve felt better. My doctor was pleased with my report of how I was feeling and wants to keep me on this pill for now.

He spoke of many different types of immune therapy that might be a possibility for the future. This is all kind of up in the air based on my symptoms and coverage for prescriptions.

He also talked to me about a study in Maryland that he would like to see me get in to. They collected blood work yesterday to see if I may qualify for that study. This particular study would remove my T cells, mutate them in some way so they were made to fight the melanoma and then put back in me. He was going to send us more information on this study.

My next appointment will be in a month. I will need another biopsy so they can do the gene mapping. I will get another scan the week of my next appointment for him to compare to previous scans. Unfortunately I also had to get the Xgeva shot this time. It is in my best interest because it is keeping my bones strong but for the next ~4 days afterwards I have a great deal of pain all throughout my body from it.

Overall things went well. It is so difficult to recap everything due to the shear amount of info given in a short time and so many things are up in the air at this point. I’m so thankful for the good past few weeks I have had though. Thank you again for all your help and prayers.

Don't Forget the Spouse

Throughout these last 5 months of my illness, Matthew has been there for me day in and day out. He never gets a break from my illness as he lives with it every day…seeing all of the good and ALL of the bad. Seeing me sick and tired; not the wife he was used to. He has been there by my side the entire time, even through my first battle with cancer in 2005 and stuck around knowing it could come back. His role in this is by no means easy. You know when your spouse is sick, how long those 2-3 days can seem! Imagine 5 months of that! He is the one I lean on the most. He is one of the only people that get my very worst day when I sob uncontrollably, yell out of anger or start crying randomly throughout the day. Meanwhile, having to answer to the question, “How’s Dori doing?” more frequently than not, with nothing good to report at times. He longs to switch places with me or be able to take the pain away but instead having to deal with the reality that those are not options. It’s all about me yet he is the one continuing to work full time, do extra house work, drive me 3 hours up to Columbus and back, sit for hours in hospitals, and listen to me complain. Not to mention having to contemplate potentially losing his spouse, his partner in life, and raising our son by himself. That is too much for one person to handle but he is doing one hell of a job at rolling with the punches as they come and being my partner in life through sickness and in health. In my point of view his position, in this whole situation, is much harder than mine. The purpose of this blog is to show you part of what the spouse goes through so that people don’t forget the spouse. Remember to show them some extra love and ask how they are doing instead of me. Don’t forget they are going through this just as much as I am, if not more. Don’t forget the spouse.

Change of Plans

First let me apologize for my lack of posts. The first several posts came easily to me as I felt that they were very practical things that people could learn from. I have since then wrestled with what to post about. I realize that most people just want updates without having to be too nosy so my goal is to try and post more frequently. I feel that I have struggled with this for a few reasons, 1. We choose not to have internet at home as a way to save money and attempting to manage me blog through my dinky android would be nearly impossible along with the fact that I am stuck at home most of the time. 2. I have struggled with how vulnerable I want to be through this. The cancer journey is a complete roller coaster of emotions and sometimes I have a hard time even being vulnerable with friends, let alone everyone that would view my blog. 3. I have always hated writing!!! It has never come easily to me, I’m not good at it and I usually don’t enjoy it : ) lol – those three things don’t really lend themselves to having a blog but I’m going to try my best at improving : )

I was due to have my 5th chemo treatment today however my doctor had other plans yesterday after viewing my scans from last week. He has been having me get a CAT scan after every other treatment, so every 6 weeks, therefore I had one last week. He was able to compare this recent scan to the last one and determined that my tumors have grown 20-30% since my last scan. Yesterday at my doctor’s appointment he recommended stopping the chemo at this time would be best. He presented 3 different options to us including 2 trials. The number 1 option would be to get in to a trial in NYC however we have been trying that option for the last month or so and it does not appear it will pan out for multiple reasons. The second option was a trial at OSU that would be a type of immune therapy, the third option being immune therapy as well. He feels these are my best options as of now. He is making several phone calls this week to see about which route we will be able to go so we hope to know more about which option we will take in the next week.

Please pray for these next options and that they would have a positive response in my body. Please pray for my body in general. I have had a low grade fever for the past 4 days which really almost paralyzes me due to the joint aches and pain. This makes it very hard to take care of Carter at all however I am so unbelievably grateful for family that have stepped in to help. Hoping for this fever to subside soon and without chemo, I may end up with less symptoms due to not having the chemo.

Again we so appreciate and are so very grateful for everyone’s help and support! Thank you, Thank you, Thank you to you if you have helped in ANY way!

Stay tuned, I will try to post a more cheerful post of our recent sister trip!

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.