Debbie's 3/23/2017 Post with Updates on Scott

Scott's month long break

                         
Journal entry by Debbie Heiman — 3/23/2017

It's been 3 weeks since I posted, so I wanted to get everyone up to date on Scott's status. He finished chemo on March 9th, and had his Neulasta shot on March 10. He hasn't had to set foot in a hospital or go to any appointments for almost 2 weeks, and won't have to until his CT scan on April 10th.

The week after chemo was rough, with a lot of stomach issues. Nothing he ate seemed to agree with him, and that is very frustrating. He would get hungry, but didn't want to eat because of what it did to his stomach. Thankfully, he's been feeling much better this week. I'm just so happy that he has remained fever free once again and avoided a hospital visit.

Through chemo week and everything else, Scott has continued to work full time. Most weeks, he's even putting in a bunch of overtime! It's incredible that he is able to have enough energy to work that much. He is an inspiration to me!

On April 1st, we will be attending a Sarcoma event at Milwaukee County Zoo. I will be on a question/answer panel for caregivers and talk for 5 minutes about being a caregiver to my spouse. I am extremely honored to be chosen for this position. When I was called by one of Scott's nurses and asked to speak, I asked if it would be ok to talk about my faith. I told her that if they want me to speak about how I've handled everything in the past 2 years, I would have to talk about my faith. Otherwise the answer would have been NO. Thankfully, she said it would be fine. I can't begin to tell you how God has carried us through some really rough days! Without him in our lives, I can guarantee we would not be doing as well as we are. 

The next big date is April 5th, when Scott and his friend Matt fly to Georgia for the Masters (golf-in case you don't know). They will be staying with Matt's in-laws. It was so nice of them to let Matt and Scott stay there! They will have a great time, and I'm so happy for him! He deserves a break from everything! 

On April 10th, 2 days after his return, he will have his CT scan. We meet with Dr. Charlson on April 13th to get results. Those days of waiting will be hard, but we will be doing a lot of praying to get us through.

Looking ahead- I know that this is almost 4 months away, but I just found out about this Race for Sarcoma. It is being held on July 16th in Oconomowoc, WI. It is a 5K, which is 3.11 miles. You can choose to walk or run. I want to get a huge team together to show Scott how many people are on his side, praying for him during his fight against DSRCT. The link below will take you to a page to sign up for this race. It's already marked Team Heimanstrong when you fill out your information. We will be wearing our yellow Heimanstrong shirts, so that we will stick out. I love that we can also share our faith while wearing them. The front has a cross that says Stronger than Sarcoma and the back has Scott's chosen passage - Psalm 62:5-6 Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken. 

Scott knew that was his fighting passage when he opened the Bible right to it when he was in a very dark place. Not only had he been told that he had DSRCT, but this was 5 days later when he was in a hospital bed waiting for his heart to slow down from 200 beats per minute when his atrial fibrillation had gone out of wack. He finally had to have cardio version. We're so thankful that the procedure worked! 

If you sign up to race and don't have a yellow shirt, but would like one, I will be placing an order. I believe I can purchase them for $5 a shirt if I get an order of 10-15 or more. You can text me with shirt sizes.  (ask Jen or Debbie for Debbie's phone # and/or email address). Also feel free to contact me if you have any questions.

When you click on the link below, you can click on the menu button on the sign up page for more details about the race and the money that is being raised for Sarcoma research. Our family is also raising money for Sarcoma research. On the race page, you also have an option to donate. If you choose to do so, please make sure it is under Team Heimanstrong. We appreciate any/all support that you are able to give. Sarcoma research is very close to our hearts!

Here is the link to the race page:

https://runsignup.com/Race/Register/RaceGroup-357129?raceId=44121

What we will do for now is enjoy our time until April 13th. Once we get results from his scan, we will decide what the next step in his treatment will be. Our prayer is that he has remained stable, meaning there are no tumors anywhere except for in his liver. Hopefully the tumors in his liver have decreased in size as well! Whatever we are told on April 13th is all part of God's grand plan for our lives. We trust him fully! 

Much love from our family to yours! 💜

I'm Weary

     I'll spare you the long history my family has had with loss and cancer.  If you follow me at all, I'm pretty much an open book, so you likely already know what we have been through, and if you don't know, this blog will fill you in. 

     My Stepdad, Don, has had 2-3 jobs for many years to help pay for my Mom's medical bills.  He is the hardest worker I know.  Nine days ago he had a grand mal seizure while at work.  He was rushed via ambulance to the ER at the closest hospital.  He was released 2 days later (his 56th Birthday).  His life changed that day.  He had to take a leave of absence from his part-time job because he drives forklift there, and legally one can't drive in the State of IN, until he/she has been seizure free for 6 months.  Since the EEG showed significant seizure activity in his brain the following day, he was put on a very strong seizure med.  His body is still recovering from the seizure and the med is taking longer for his body to adjust to than we had hoped.  It is because of this, that he is still out of work, and it is unknown as to how much longer he will be out.  It can take weeks for a body to adjust to this high of a dosage of a seizure med.  His company does not offer short term disability insurance, so if he doesn't work, he doesn't get paid.  Mom retired a few years ago (she is now 64) due to her health issues.  Last Thursday Mom got her scan results.  She had a scan the day Don had his seizure.  The results showed 3 new tumors on her spine, explaining why she is in so much pain.  She is already doing radiation for cancer in other parts of her body.  Now she has even more radiation and is taking a chemo pill.   Needless to say, they have lots of medical bills, with little income.

     I'm not gonna lie.  This really sucks.  It sucks for them to have to go thru this, and it sucks for me. and those who love them, to know they are going thru this.  If you love someone, your heart hurts when they are hurting.  I wish I could make it all better for them, but I can't.  If you've lost a parent and/or had a parent that was very sick, you know how much it can weigh on your mind.  It's really too much to handle to have Mom have cancer, Don dealing with the aftermath of his seizure and my BIL's very serious cancer.  So yes....I'm going to be honest and I'm going to be real.  I'm tired and I'm weary.  I'm angry that my Family has had so much heartache.  Yes. I know others have it worse.  Yes.  I know God is in control.  I know ALL of this, but it still sucks.  Being an Adult is hard.  Working Full Time is hard.  Working Full Time with so many close loved ones with major illnesses, well.....it's hard...very, very hard.  It's making my depression worse. 

     We are a strong Family, but we are human.  I am weary.  We are weary.  I just pray for peace and I'm going to give myself permission to feel however I feel.  Thank you to my Small Group Friends for letting me be REAL tonight and for validating my feelings of being overwhelmed with life right now.

     Please keep us in your prayers.  If you feel led to donate money towards Mom and Don's Medical bills, and to make up for some of Don's lost income, you can do so here.

     John 11:35 - "Jesus Wept".  Yep, I shed lots of tears tonight.  Praying for God to lift my spirits, and to provide strength and comfort to my Family, especially my Mom.

Debbie's Latest Caring Bridge Update From 3.2.2017

Exciting, but a little scary

Journal entry by Debbie Heiman — 3/2/2017

Today's labs looked good, and Scott is ready to start chemo on Monday, March 6th. He will have 4 days of chemo and then his Neulasta shot on Friday.

We talked to Dr. Charlson a lot today about what to do next. He thinks that a CT scan is our best bet for his upcoming scan instead of doing a PET scan. In the end, it is our choice. We decided to go ahead with a CT scan first. If everything remains stable, then we'll be happy. If there is any growth in the liver tumors, or if any new tumors appear on the scan, then we will schedule a PET scan.

His CT scan will be on Monday, April 10th. We will meet with Dr. Charlson on Thursday, April 13th to get the results.

That gives Scott exactly a month of no treatments, Dr. appointments, or even setting foot into a hospital, God willing. That's exactly what he needs right now! He deserves a break from this 2 year battle! 

The day before his scan, April 9th, marks the 2 year anniversary of hearing the dreaded word cancer in the ER at West Allis Memorial. 

Speaking of that day, I have to share this amazing story! I have thought about what that amazing ER Dr. did for us many times over the past 2 years. I looked through our paperwork and found his name. I called him to thank him for his quick action in helping to figure out that Scott had DSRCT. We had a great talk about faith and God's plan for us all. He lost his brother-in-law to cancer in December 2016, after a 5 year battle. His little sister is widowed with 3 young children. This man is amazing, and took the time to send me a beautiful letter in the mail. He said that most of the time, he never finds out what happens to his patients once they leave. He remembered us, but never knew what Scott was diagnosed with. He was very sorry to hear what I shared with him.

Along with the letter were 3 devotions/talks for us to read. He told me if I have the time to update him, he would appreciate it, but he understands how overwhelming it can be. I couldn't believe how much he cared to go out of his way to send that! It truly meant the world to me! He is one of the reasons that we still have Scott here with us! DSRCT isn't always found so quickly. Sarcomas are very rare and DSRCT is a rare form of Sarcoma.

God surely places special people in our lives, even at the most difficult times.

We're very happy and excited about the upcoming break. Unfortunately, fear accompanies those feelings. This cancer can grow so quickly, and you never know when it's going to spread or grow.

We must continue to trust in God's perfect plan! Dr. Charlson assured us that Scott will be monitored closely with frequent scans. 

The results we receive on April 13th will help us decide what the next step will be in Scott's treatment. We must keep fighting this beast! 

I am excited about an upcoming Sarcoma event at Milwaukee County Zoo on April 1st. I will be giving a brief 5 minute talk on being a caregiver to my spouse. Froedtert has also chosen a parent caregiver to a child with Sarcoma and an adult child who is caregiver to their parent with Sarcoma. We're planning on bringing our kids to share the day with us.

Please pray for this last cycle of chemo to not be hard on Scott. I'm hoping for a smooth end before his break.