A Work In Progress

A Work In Progress

Saturday, July 30, 2016

Our Busy, Emotional, Crazy, Chaotic, Sad, Happy, and everything in between Season of Life.


Wow.  It’s been one busy year, full of change, both good and not so good.  Overwhelming Happiness. Overwhelming Sadness.   Everything in between.

Early January - Trip to FL for my B-Day

Jan/Feb - 3 chain smokers moved in in the apartment below us and for a few months we felt like prisoners in our own home.
End of Feb/beginning of March - House Hunting
March 11th - Put offer on house
March 12th - Counter-Offer
March 13th - Final Offer Accepted
March 11-13th Watched Scott & Debbie’s Kids in WI to give them a weekend away
March - Packing/giving things to Goodwill
April 8th - Closed on Our New House

April 8th - 10th - Moved into New House
April 15th - 21st - FL for Cousin’s Wedding

End of April - Cleaning Old Apartment
April 29 - May 1st - WI - Gave Debbie & Scott a date night (we took the kids to the Safehouse) and went to a Confirmation.

May 22nd - May 29th - Jen in NY for BIL Scott’s very serious Surgery, which didn’t happen till June 3rd.  He got CDiff and  was hospitalized for 3 weeks, and they were away from their kids for a total of 6 weeks.  I had to return to IN on the 29th b/c I had used most all of my vacation days. Mom and I had a great opportunity to sightsee in NYC! :-)

May/June - Bought things we needed for new house.
June 4tth - Cousin’s get together in Vernon Hills IL

June 10th - We adopted Mookie

June - Shopping/Planning/Cleaning for Party on June 25th
June 13th - We took Mookie to get neutered

June 19th - Father’s Day - Both of our Dads are in Heaven
June 23rd - We took Mookie to get groomed

June 25th - We had a fun party (65 people) celebrating our New Home, Summer Solstice and 5 Year Anniversary

June 26th - We took Mookie to ER Vet where he was sedated and we were given meds to give him for 2 weeks.

July 6th - We started our drive to WV and spent the night in OH.
July 7th- 9th We were in WV visiting Jonathan’s Mom.
July 8th - We celebrated our 5 Year Wedding Anniversary! :-)

July 10th - We drove back home with Jon’s Mom and she stayed with us for the week.
July 16th - Jon’s Mom left for Grand Rapids with Sandy and we drove to WI to help our very close friends.  This was the day my Best Friends Dad (and a Father figure to me for 24 years) passed away.  After my Dad passed December 8th of 1999, I would spend Thanksgiving with their Family.  Mom and my Sisters were at their Significant others Thanksgivings and Carey’s Family included me so i wouldn’t have to be alone.  My heart hurts for my Friend knowing how hard it is to lose an earthly Father.  I too, miss my Friend’s Dad.  I am their “adopted daughter”.
July 17th - We drove back to South Bend
July 19th - We drove back to WI for Funeral.
July 20th - Burial - and we drove back to South Bend
July 18th, 21st, 22nd, we worked a total of 3.5 extra hours on these days to make up for leaving early on Tuesday to drive to WI.
July 26th - 29th - Jonathan was in Troy MI for work.  Our ant problem got exponentially worse while he was gone and our dog bit our Friend.
August 1 - August 5th - Jonathan will be in Tampa for work.

Then add in the fact that my Mom has continued to have her cancer treatments (except for when she was in NY for the surgery),  Scott got stem cells harvested this week and began a month of full abdominal radiation. Oh, and then toss in my old lady hormones. Wow.  All of this combined with trying to focus at work…...it’s been an overwhelming 5-6 Months for JS Squared (that's us!).  There were highs and lows….but even good change is stressful.  These are the ebbs and flows of life.  I’m hoping things start to settle down for a season for us.  During that time I also attended a Friend’s Mom’s Funeral and a visitation….and we started applying for life insurance right before we moved...and…..we are still dealing with that process (things will be finalized this Monday).  Apparently there were 2 Jennifer S's in Underwriting at the same time and the other Jennifer uses Nicotine.  My Depression also makes the approval process/premium more challenging.  This is why the premium for me is more expensive than the premium for Jonathan.

I went to see my Counselor a few weeks ago.  We practiced mindfulness.  He then asked how relaxed I was.  I said about a 4, but I don’t think I’ve ever been completely relaxed.  He said “No, you haven’t!” :-)  Later I was admitting to being a control freak and he said “Yes, you are!”.  :-)  He knows me so well. I know God will use this Season of Life to Strengthen me and lead me closer to Him.

I am well aware that everyone goes thru the ups and downs of life.  Some seasons just happen to be more stressful and emotional than others, and this is one of those Seasons for us.  I think there should be a rule that only one family member at a time can have cancer.  If you've ever had a close loved one with a serious illness, you know how emotionally and physically exhausting it can be.  Having 2 close loved ones with cancer really weighs on my heart.  Especially b/c my baby sister has 4 young children.  I hate that they are going thru this.  It's a good thing God is God and I am not.  He knows what's best for us and His Love and Comfort are always available for us.

A cancer diagnosis changes your life and the lives of the people who love you. The emotional impact can be felt for years to come.
Jennifer Giuffre-Donohue Blogger, jenngeedee.wordpress.com
Huffington Post 10//8/2013
Cancer affects family and friends, as well as the person with cancer, whom all can experience grief in different ways throughout the cancer journey.

I am a highly sensitive person too, which means I handle stress differently.  

“Being highly sensitive means we're going to feel stress more intensely and react to it differently than other people. While a not-so-sensitive person may be able to react with laughter to tight deadlines, stalled traffic and a leaking washing machine, the highly sensitive person will find it difficult to cope with even one of those events. Add all three into one day and it's going to take a toll. Add emotional stress into the mix, from difficult relationships for example, and the result is often more than we can handle.
Highly sensitive people absorb more environmental information than other people, and that includes both the good and the bad. Absorbing information is tiring. It's a largely unconscious process that uses up a lot of energy. And when there's too much of it, such as constant noise, lots of people, and busy schedules, we become overwhelmed. It's this state of overwhelm that wears us down.
All too often, we're moving so quickly and trying so hard to meet everyone's demands, we don't even realise we're stressed or that we've taken on too much. If you've ever felt like you're swimming with your head barely above water, you're probably stressed. And yet most of us just keep swimming.
What the mind won't deal with, however, the body will. Highly sensitive people absorb not only information, but feelings and energy as well. Working or living with angry or negative people, for example, means that you're absorbing their negative feelings. And even positive experiences, like going on vacation or getting married, can create a lot of stress as well, simply because of the excitement.”
Deborah Ward from a Psychology Today Article from March 4th, 2012.
I took a 3.5 hour nap last Sunday Afternoon.   I must have needed it!  
So I’ve gained weight.  Actually, we both have gained weight. Maintaining/losing weight and saving money have not been at the top of our priority list lately.  We have been in survival mode for quite a while now.  We ended up going back to the old Points Plus Plan from Weight Watchers. We were successful with that. We have not been successful with Smart Points. It's healthier, but we feel deprived which ends up setting us up for failure. We will get back there. We also have a plan to start budgeting again with our next checks. We lost weight. We got debt free. We can do hard things.

Here are some of the promises of God that I cling to in hard times.

Psalm 34: 17-19.  “The righteous cry out, and the Lord hears them; he delivers them from all their troubles.  The Lord is close to the brokenhearted and saves those who are crushed in spirit.  A righteous man may have many troubles, but the Lord delivers him from them all.”
Psalm 9: 9,10  “The Lord is a refuge for the oppressed, a stronghold in times of trouble.  Those who know your name trust in you, for you, Lord, have never forsaken those who seek you.”
Psalm 46: 1-3  “God is our refuge and strength, an ever-present help in trouble.  Therefore we will not fear, though the earth give way and mountains fall into the heart of the sea, though its waters roar and foam and mountains quake and with their surging.”
James 1: 2-4  “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything.”
I'm sorry if I jumped from here to there in this post.  Those who know me know this is what a conversation with me is like!  I have self diagnosed A.D.D.  Please pray for Strength for my Family and for success for our Mookie as we hire a dog Trainer to help us with his biting issues. This situation is also weighing heavily on me.  I love Mookie, but I hate that he has bitten people I love!
Thanks All! We have had lots of change in a short period of time, but I know that "This too shall pass"! :-)  Life is Tough, but God is Faithful! :-)

Tuesday, July 26, 2016

Debbie's Update About Scott's Stem Cell Collection

1st day of stem cell collection

Yesterday, Scott had his Mahukar line placed in order to start his stem cell collection today. I was mistaken when I called it a PICC line. They said it is very similar to that, but it is placed by his collar bone/neck, not in his arm. It's not the most comfortable thing for him, but he only has to have it in until Friday morning at the latest. They said it will feel like he's wearing a necktie 24/7. 

After the procedure, we went to the day hospital for his shots. He got Neupogen and Mozobil. Neupogen stimulates the bone marrow to produce stem cells that are pushed out of your marrow into your peripheral blood and Mozobil pushes those stimulated stem cells out of your bone marrow into your peripheral blood. That's the complicated and technical definitions.

It is currently 12:45, and the collection is going well so far. We'll be here doing collection today until at least 3:30. Scott has to get his shots around 5:30, so we'll see how this goes. We'll be back tomorrow morning for 8:40 labs and 9:30 collection again, just like today.

Since Scott has to remain fairly still for the collection, he decided that sleeping is his best option! I'm glad he is resting peacefully.

Scott's dermatology appointment was scheduled for 2:30 today. We definitely won't be done by then, so I cancelled it. We will be keeping an eye on his rash for the rest of the week. As of yesterday, the rash is completely gone unless he scratches himself. He is still a little itchy on his arms and legs. When he itches, that area becomes red and irritated. It stays that way for at least 20-30 minutes or more. It's very strange! 

Saturday, July 23, 2016

Life Isn't Fair

I just read this update Debbie wrote 8 hours ago.  It breaks my heart that Scott, Debbie, and the kids have to go thru this, but I am confident that God will use this extremely difficult time for their good and His glory.

Froedtert on a daily basis

Today began our daily trips to Froedtert. Instead of starting radiation on Tuesday, they decided to do a stem cell harvest on Scott first. They will be collecting Scott's stem cells on Tuesday, Wednesday, and Thursday of next week. Radiation will begin on Thursday after his stem cell collection. The reason they decided to do this is because the radiation may affect his bone marrow to the point of needing a bone marrow transplant. If that happens, then his will be stored and ready.

Today, he had labs drawn and got his first injection in preparation for the stem cell collection. Tomorrow and Sunday, he will return for injections. On Monday, he needs to have a PICC line placed for the collection and get another injection. 

Tuesday begins his collection. They added in an appointment with dermatology on Tuesday as well, because he still has a nasty rash. They had him stop his penicillin on Tuesday. We were hoping the rash was due to the penicillin that he takes twice a day since having his spleen removed. Hopefully the rash will be gone by Tuesday, and we can cancel the appointment with dermatology.

Scott hasn't been feeling well, and had a temp of 99.8 on Thursday night. Since his spleen was removed, I have to take him to the ER if his fever goes over 100.4. That was too close for my comfort.

I feel so badly for him, and just pray that he can have a day or 2 of feeling better before radiation starts! This is all very draining for our whole family. Please keep Scott and our family in your prayers!

Wednesday, July 20, 2016

Heiman Strong Updates

Jonathan and I, and our new dog Mookie, got to visit the Heiman Nieces and Nephews on Sunday!  Mookie loved meeting them, and I think the feeling was mutual! :-)  We love these Kiddos and their Parents!

Here are Debbie's most recent updates regarding Scott's continued Fight against DSRCT.  Thanks for following their Story and for your continued thoughts and prayers! :-)

Radiation Scheduled
By  — 

Wednesday, July 13, 2016

Continued Prayers Requested for Scott and Debbie as They Continue Fighting This Beast Back in Milwaukee

Debbie's CaringBridge Post From Today:


Yesterday, we met with Dr. Firat about Scott's upcoming radiation. He talked to us for a long time about possible complications and side effects. He expects Scott to be nauseous, very tired, and lose weight. That's just the most common side effects. We pray that the symptoms are minimal.

He told us that he wishes he could tell us that this is our cure, but that's not the case. We know this, but hearing the cold hard truth isn't easy. The cancer in the liver complicates everything.

He explained that this treatment will help remove the remaining cancer that was left in the peritoneum after surgery. Dr. LaQuaglia removed everything that can be seen with the human eye, but the radiation will blast whatever may remain. He then explained that the liver disease is the part that radiation won't get rid of. They are not avoiding the liver, but the surface of the liver will get the full dose, and only part of it will escape into the liver. We are just praying that it helps the liver more than they think it will. Miracles can happen, and we keep praying for them.

Dr. Firat will be talking with Dr. Wolden, a radiologist in New York. We spoke with her after Scott's surgery, before we left NY. The 2 doctors agree with each other completely, which is great! Dr. Firat said that he follows MSKCC when he treats DSRCT patients or others with whole abdominal radiation. That is reassuring to us. 

We agreed to move along quickly, since this cancer is so aggressive!
We will go to Froedtert at 7:30 tomorrow morning for a PET scan. Dr. Firat wants to make sure that the cancer hasn't spread anywhere else, and to get a better idea of how active the tumors in Scott's liver are.

We will then be going back to radiation oncology after the PET scan to have Dr. Firat plot out Scott's radiation zone. It is a very complicated process. They will cover 43cm (from shoulders to pelvic area). They need to map it all out and try their best to avoid the bones. There are a lot of bones in your upper body!

He has a very long torso, so Dr. Firat said that the regular machines will probably not be able to cover that large of an area. He has a plan though. We trust Dr. Firat and his expertise.

After Dr. Firat does some mapping, measuring, and planning, we will meet with a nurse. She will answer questions and do some teaching on how to make it through the month of radiation. 

I will write another Caring Bridge once I know more after our appointments on Thursday. It's a lot to take in!