September – 2016

I’ve received some really powerful messages from people who have stumbled across this blog after their loved ones were diagnosed. If it weren’t for those messages I would have probably quit blogging by now. It’s really hard to pour your heart out knowing that anyone can read it..but then I get a message from someone who says that my words made a difference in their day and it reminds me why I continue to blog.  There isn’t a lot to share at this point because not much changes day to day.

We are in a very frustrating place. Mike sees his oncologist once a month for medication refills. It’s hard watching him struggle each day and knowing that I can’t do anything to improve his quality of life. On a typical day I wake up and go to sleep with the first and last words I hear being “I’m not doing good” or “My head hearts.” I wake up and walk straight to the medicine knowing he’s going to continue to repeat the same words all day. He often holds his hand on his scar and asks “What happened to me?” I can’t even put into words how deep my heart hearts knowing I can’t fix this. There’s no doctor I can reach out to who can give us hope.  I have never been tough enough to see people in pain.  I am thankful Mike is here but I wish so badly that he could have more good moments.  I wake up in the morning praying “God I can’t even get out of bed until I know you are going to get me through this day.” Before I go to sleep the prayer is usually “Thank you for today and for getting me through.”

The kids are all doing great. Our oldest is working full time and is starting classes at the local community college. I’m so proud of her for pushing through and graduating early and starting college as a teen mom.  At 17 she is one of the strongest people I know. Her baby keeps us all on our toes. She started crawling and standing at 7.5 months and hasn’t stopped moving since. Our son is doing well in high school. Our lifestyle has changed drastically since before Mike got sick. We used to be a very active family and now our days are spent mostly at home, so he spends a lot of time in his room.  He loves video games and his favorite class in school is one where he learned to program video games.  Our youngest daughter is always upside down these days since starting gymnastics last year. Any given moment that you walk into the living room she is likely to be upside down in a handstand or doing a cartwheel. She also started riding lessons recently.

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I’m working full time from home as a LuLaRoe Consultant. I fell in love with the clothes and the company and saw it as a great opportunity to work from home. I’ve transformed our loft into what I call the LuLaRoom.  Most of my business is done online and it has been successful so far. I’ve been able to model my business focusing on customers online since I’m not able to do in person sales as much with our home situation.

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Some days I feel guilty for the time I spend on it, but I also know that our kids need me to have an established income since the future is unknown with Mike. I know that once Glioblastoma is diagnosed that it’s expected to grow back. I’m still praying for healing and restoration.

I joke about Mike’s midnight snack attack. Seriously, as soon as I feel like I can crawl into bed and get some rest, he’s up rummaging through the cabinets for food. I’ve started to really push yogurt, fruit and vegetables…he usually wants chocolate.

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Donut Friday’s are still his favorite. We can almost always get a smile out of him over a donut. I have a huge heart for giving…Mike loves donuts…I love LuLaRoe…He is back at the oncologists office he has been with since 2012…so naturally, we showed up at the last appointment with Krispy Kreme for the staff and a donation of comfortable buttery soft leggings for the infusion center patients. I’d love to take more – not only to the infusion center, but to the children’s hospital and hospice center. Being a caregiver and finding comfortable stylish clothes was a big deal for me so I would like to pass that on. I love the idea of both cancer patients and caregivers being comfortable and knowing that someone cared enough to give them a gift.  When you are in these situations, any good deed can be wind in your sales to get through another day. Just to know someone cares enough to go out of their way to do something for you. I can only give so much. There was a time I told Mike “You can’t outgive God.” He said “Yeah, but are you outgiving our bank account?!”

If you’d like to purchase a pair of leggings, shirt, or outfit for a donation – just fill out this form and I will email you an invoice to sponsor a pair. I will take them directly to the patients. My focus this month will be the children’s hospital since September is Childhood Cancer Awareness Month. I will take leggings to both kids and their moms.

 

 

 

 

 


8 responses to “September – 2016

  • Cathleen

    Oh…my heart of prayer over you all. My true love, love of my life just entered heaven on 8/26/16. A “long term survivor” of 3.8 years… My heart is broken, raw, and I am “missing” – while at the same time relieved for him to know health of body and mind. There are no words for the pain. And my prayers continue for you and Mike and your family. There is no way to explain to others the slow disenigration of the essence of the love of our life. It is unlike any other cancer. All cancers are poison… But to loose our love at their core is something only another going through it can “get”.
    In HIS love and truth – and healing where it is needed.

  • Leah B. Edwards

    You ARE an inspiration and encouragement to others! I continue to read your blog after losing my dear friend 9 months ago. This disease is one that only those who have gone or are going through it can truly understand. Your faith in our Lord is a testimony for so many. My heart hurts so badly where my friend’s life is no longer, but I praise God she asked Him into her heart during her short illness, and I will see her again. Please continue to update us on your life as you are able, for we do care. You and your family are in our prayers.

  • Holly H

    thank you so much for sharing your life with us, you are an inspiration to anyone experiencing this horrible disease. My 79 year old dad was dx on 5/5/16, had surgery 5/25 and was going great. The tumor grew back in 4 weeks to the size it was at surgery. It was very discouraging news, but he had 3 weeks of treatment and the tumor responded well. He hasn’t given up. He can no longer live with my mom at their home because of stairs. He lives in a long term care facility and she (now 77 yrs young) spends all day, every day with him. She is so faithful, but you are right, we need to care for our caregivers as well. My brothers and I all visit every day and give her time away. You and Mike and your children (and grand child) will be in my prayers. God’s peace be with you all. Holly

  • Pamela

    I am one of those people who looks to your blog for encouragement every single day. I admire your willingness to share your most personal thoughts, realizations, fears, and hopes in your day-to-day challenges as a GBM caregiver. We are almost four months since diagnosis and my husband had his first seizure about a week ago. It was pretty scary. He ended up in the hospital in ICU for a couple of days. I searched your blog for a similar experience that you had shared about Mike. In dealing with this most horrid of cancers, It helps to find others who have had similar experiences from which to draw upon for support. Although people say they understand what we as a family may be going through, they cannot fully understand. It is one of those lived experiences that at times seems so overwhelming and with little opportunity for escape. Thank you for sharing of yourself and your family. As you indicate in the title of your blog, I pray with you for both healing and restoration for Mike.

  • cindra Kidd

    I too, loo to your blog for GBM info and caregiver hope. My husband was diagnosed 5/13/16 it has already grown back 40% with surgery, radiation and chemo. It is a beast of a diease, and very difficult on the family. I hope everything is going as well as can be expected.

    • Pamela

      So sorry to hear of the recurrence. My husband is about two weeks ahead of yours in the diagnosis and treatment process. I feel like I am living in 8 week cycles that get more challenging to manage as the time for another MRI draws near. I appreciate Shauna’s blog more than I can express. There are days when it is very difficult to make it through. Support from others who really understand is critical.

      Shauna, thanks for sharing your story, your family, and your challenges with all of us.

    • Nancy

      My husband was also diagnosed on 5/13/16. Friday the 13th 😢

  • Nancy

    Thank you so much for helping all of us dealing with the same issues to stay positive. I have finally quit looking back at what our lives were like just a short five months ago (5/16/16) – getting ready to leave on a six week trip in our new Airstream trailer through Montana, Washington, and Oregon. The trailer was packed, the luggage was in the foyer ready to be loaded when we got the call from the doctor to head immediately to the ER as his scan showed a mass in the right frontal lobe. I think I’ve finally accepted that life will never be the same, but still struggle with feeling so very sad. Your blog is helping me – thank you. It’s going to be okay – not the same – but okay 🙂

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