Living with Stage 4 Lung Cancer – December 2020 Update

Writing about my stage 4 lung cancer isn’t easy, but I think it is important to share for several reasons.

I know that so many people are praying for me and sending me good vibes, both of which I appreciate so much. I want all of the wonderful people supporting me to know how I am doing.

Enjoying the trails at Smith Mountain Lake State Park
Weekend hike at Smith Mountain Lake State Park

I also think it is important to share because my posts could help someone else who is struggling with cancer. My words could help someone newly diagnosed with lung cancer and possibly give them hope.

Living with Stage 4 Lung Cancer – My Forced March

In my October update, I said that I call my experience with cancer a forced march. It’s not a journey or a battle for me. If it was a journey, I’d be going somewhere fun. If it was a battle, I could fight. I can’t fight what happens with my cells. They are going to do what they do.

If you’re new here, you can catch up on my forced march with cancer in these posts:

Like my last update, I’m going to break up this post with pictures of fun I’ve had from late October through December. I do my best to live my best life and to enjoy every second of every day!

Paula and Sherman Skulina on the boat at Smith Mountain Lake, Virginia
Late October boat ride on Smith Mountain Lake.

What Happened in October

To recap, my October brain MRI detected a new issue in my brain, leptomeningeal disease. I was crushed to get this news but thankful that when I had a spine MRI, there was no disease found in my spine.

My CT scan also showed a thickening of my Adrenal Gland, worrisome as cancer progression could mean the end of my targeted therapy treatment.

My new treatment for my new brain issue was to start a double dose of my current cancer medication, Tagrisso. The hope was that the double dose would control the lepto, my current brain lesions, and the thickening of my Adrenal Gland.

Man working at a vintage office desk with a dog on the floor beside him
Sherman keeping Mr. SP company while he works from home.

I mentioned in my last post that a double dose can cause heart problems, so I’m monitored with EKGs and at the end of October I had an echocardiogram. So far my heart is doing just fine!

Side Effects of my New Treatment

My skin is taking a beating from the double dose. I have painful cracks on the tips of my fingers, on the palm of my hand, and also on my heels.

Coating my hands and feet at night with Bag Balm and sleeping in gloves and socks helps with this. I also have to be diligent with lotion as my skin is very dry all over.

I just discovered that Bag Balm has a dog version. I ordered some to use on Sherman’s dry elbows. It gets great reviews, so I hope it will help Sherman.

These side effects are totally tolerable and I will gladly deal with them if the medication is working.

Denali the puppy
Kisses from Denali, our friends’ new rescue puppy.

Stressful Insurance Struggles

A huge stress that has happened with starting to take the double dose of my medication is my insurance denying providing it for me. My oncologist appealed their denial and they denied me the double dose again. As of the writing of this post, this still isn’t resolved and it gets worse.

I got a letter from the insurance company letting me know that starting January 1, 2021, my Tagrisso is on their “nonformulary” list and they will not cover it. So now not only do they not want to cover two bottles of Tagrisso a month for me, they are not covering any bottles of Tagrisso.

The insurance representative that I spoke with the other day told me that Tagrisso would need prior authorization. If my doctor submits for prior authorization and the insurance company decides that I don’t have a clinical need for my drug, I will be responsible for paying for it. Since they’ve denied me twice, I am very afraid that they’ll continue to deny me, claiming that their oncologist who reviews prescriptions says that I do not have a medical need for a double dose of Tagrisso.

My fingers are crossed that I will get prior authorization for my double dose. If not, I have to pay for it and one bottle is $15,000 and I need two bottles. Knowing that I might have to pay $30,000 a month to stay alive has me very stressed. I also applied for assistance from the drug company and was denied.

What insurance company denies a cancer patient the drug recommended by their oncologist?? I pray that this gets resolved favorably.

Hiking on Blackwater Creek Trail, Lynchburg, VA
Hiking on Blackwater Creek Trail in Lynchburg, VA

My December Tests

On December 1, I had CT scans followed by a brain MRI and a spine MRI. The CT scan is a breeze and doesn’t take long at all. For the brain and spine MRIs, they did it all at one time which meant I was in the tube for about 2.5 hours. The tube really doesn’t bother me but not being able to visit the bathroom for almost 2.5 hours almost ended in disaster!

Then there’s the waiting for the results. Ugh. My anxiety was sky high.

On December 3, I had appointments with both my brain oncologist and my regular oncologist.

The double dose of Tagrisso is working! The lepto is controlled and there are no new spots in my brain. It would have been wonderful to hear that the lepto had disappeared but it’s under control and I am very happy about that. And no new spots is good news.

Modern medicine is a wonderful thing. Tagrisso has controlled my cancer since April 2018 after my first medication failed in March of that year.

I must give a shoutout to my cousin, Amanda, who is my brain oncologist’s nurse. It is so helpful to me to have Amanda’s support and if I need something, I can text her rather than call a UVA number or go to MyChart to request help.

The Results

My Adrenal Gland is still thickened, but it is unchanged, so that was good news. It would have been better news if the Adrenal Gland was no longer thickened, but at least it hadn’t grown.

If you’re on my prayer team, keep them coming! Please pray that my insurance company will cover my double dose of medication and that the double dose of medication will continue to work to control my cancer.

A wonderful Gift from a Friend

When I got home from our fall Vermont trip, my wonderful friend surprised me with a painting that she had commissioned of Middle Covered Bridge in Woodstock, Vermont.

Painting of Middle Covered Bridge in Woodstock, Vermon

Leecy chose Middle Covered Bridge for the painting because Woodstock is one of my happy places. She knew that when I went on my fall trip to Woodstock I was thinking that it may be my last trip there.

When you have cancer, you never know how many more times you’ll get to do something. For example, on our last boat ride of the year, I couldn’t help to think that this could be my last boat ride ever.

The artist is a teenager, the daughter of one of Leecy’s best friends who happens to be one of the most popular photographers in my area.

Side note: when I went to Lindey’s website, the first picture that popped up was a wedding photograph of a couple that I taught when they were in 7th grade. Their relationship started in 6th grade and now they are grown and happily married.

Lindsey’s daughter Maddy did my beautiful painting.

Leecy is a stage 4 triple-negative breast cancer survivor who also survived her house being leveled by a tornado. Leecy has been such a great friend to me and has given me so much support since my forced march with cancer started in 2017. I also taught two of her five children!

Listen to this podcast featuring Leecy to hear her story. You won’t regret listening. Read this news article to learn about the tornado and how the Fink family rebuilt their home.

Happenings at the Lake

For the second time in 2020, there was flooding at the lake. Flooding hadn’t happened in many, many years and it was crazy that it flooded there two times in 2020.

Flooding at Smith Mountain Lake

Our dock and even our new riprap were covered by the water. You can see that our Adirondack chairs that Mr. SP made almost floated away!

Flooding at Smith Mountain Lake

Haybale art is something fun that people in Bedford County like to do. A Charlie Brown Christmas was designed and made by Beth Bays on her angus farm in Huddleston.

Family photo beside Snoopy's doghouse with Woodstock looking on

Last year she did Will”Hay” Nelson and the year before The Wizard of Oz. See all of her amazing creations over the years in this article.

Charlie Brown made from haybales

In my blog newsletter, I often mention what is going on with my cancer. I would love it if you subscribed to my newsletter to keep up with both me and my blog happenings!

I also need to give a shoutout to my two boys who support me 100% through my forced March with cancer. In the background is my wonderful Mama.

Sherman Skulina and his dad

I’ll end with a thank you to all of you who read my blog posts, send me emails of support, pray for me, and send me good vibes.

My plan is to enjoy every second of the Christmas season and try not to worry over my cancer or my insurance struggles!

67 Comments

    1. Girl…you’re a trooper! My MRI was not near as long, but with my bilateral vertigo it made it so hard to not get sick. I just kept my eyes shut and prayed! Frustrating on the insurance and lifting up your needs. You are eating thay elephant one bite at a time! 🐘💗

  1. Thank you for the update. You are strong and courageous. I appreciate your vintage/antique decor and sentiments about every object. Keep on inspiring us!

  2. It’s impossible to understand why insurance companies deny paying medicines that people need. I wonder if you could get it from Canada?? Glad to know that it’s working and that things haven’t gotten worse. Love you and am saying prayers for you!

  3. Prayers and much love go out to you !! I hope that this Christmas brings you a positive answer concerning your meds. My sister-in-law is on meds that aren’t covered, she’s a cancer survivor and it’s just so unfair and heartless. Keep doing what you’re doing.

  4. Thank you for sharing, Paula. There is strength in numbers, and prayers will get you theough. I pray the insurance company will approve your meds. This is not the time to Have the additional stress of insurance woes! Hang tight. I truly care how you are doing and will continue to pray for you in this forced march.

  5. I am praying for you to get better. You are a beautiful lady and I hope everything will get better for you. Many Blessings and Love to you from Yorktown VA.

  6. Thank you for your update, Paula. There is no way to tell how many people you help with this. I’ve always known you were an exceptionally strong person, but you continue to amaze me with your strength throughout your illness. I love who you are!!!

  7. What a strong and wonderful woman you are! I am so impressed with your positivity. You are beautiful. Just want you to know that your blog does help others. My dad passed away from lung cancer in 2013. I often wonder how his “forced march” would have changed given the advances in treatments that are available now. Good luck with the insurance. I am appalled with their decisions. Sending you lots of love and enjoy your holidays. Just for your information, I read your blog weekly. I live in Santa Fe, New Mexico with my husband and dog Kaibab. My nickname for my son, yes my son, who is in the US Maines and who is now 23 is Sweet Pea!!

  8. Paula, I can only imagine the stress you’re feeling over the insurance, and surely hope this doesn’t cause additional physical or psychological issues for you while you wait. I am a believer and cannot even begin to imagine a further denial after your next appeal. I have been advocating for a family member over a few financial matters than are rooted in physical issues for the past 18 months. Like you, we are in limbo, waiting. I will most certainly use prayer as my advocacy for you. I love seeing your nuggets of gratitude throughout your post.

  9. I’ve been praying for you every weds for a few years. I will continue. Remember, your name is written in the palm of His hand – He loves you that much.

  10. Oh, Paula. Thank you so much for sharing this with us. I am deeply grateful to know that the drug is working. I will continue to pray for your health and now will also pray for the insurance coverage of the drug. Much, much love to you!

  11. Gosh Paula, I had no idea you’d been dealing with all of this. I am so sorry. I’m happy your treatments are working and pray the insurance company will cooperate on your meds. It’s totally incredulous that insurance companies will be so cantankerous when someones well being/life is a stake. Maddening!!! On a side note…when I hear Bedford, I think speed trap. LOL We traveled through there all the time when I was growing up going from Richmond to the southwestern part of the state, and my parents were always on the lookout for police. We had a friend who got ticketed twice by the same officer. Take care! XOXO

  12. My prayers are with you at this time and pray that you start to feel better. It is a shame that the insurance companies treat people the way that they do. There should be a law against them denying people the meds that they need. I pray that they decide to help you with your meds. Stay strong and enjoy the holidays.

  13. Prayers for you. I am a breast cancer survivor. I am praying the insurance company sees your progress with the drug as a sign to double and continue it!! You have a wonderful attitude. I admire your courage.

  14. Thank you for the update Paula! I’m so happy to hear that the medicine is working. I’m so sorry about the battles with your insurance company – it seems so insane to me that they would deny covering a medicine that you need to stay alive. I hope it all gets resolved soon. Sending love and good vibes!

  15. Paula, it just absolutely infuriates me that insurance companies can override the decisions that doctors make. There is just something very wrong about that! I had them to deny one of my medications that I took for my eye disease. If they deny coverage again, consider contacting an attorney. In the meantime, I will pray for them cover your medication. Stay strong and march on, girl!

  16. Sweet Paula

    I will continue to pray for you. I will now pray your insurance company does the right thing. Know that you are in my prayers daily. Remember God is still in control.
    Hugs and prayers

  17. I am glad the medications are keeping things under control, Paula, and I will keep you in my prayers for healing and for the insurance company woes. I don’t understand why, if you have a doctor appeal, they don’t cover it. But it has happened to me. I love seeing your beautiful photos and how you are enjoying life! Love to you…xo

  18. I am praying for you, Paula. You are so courageous and I pray the insurance company will quickly change their mind. Have you thought about contacting your local congress rep about the insurance company’s decision? How about your local TV channel? I know you like your privacy, but reaching out to local leaders may help. Just a suggestion. Continue to fight and thanks for keeping us updated. We all care about you.

  19. Continuing to pray and send you good vibes! It’s an absolute disgrace, what you’re having to deal with regarding your insurance company. I’m hoping that gets resolved very soon. Keep up your positivity! Merry Christmas to you!

    1. Hi Paula,

      It’s beyond my comprehension why insurance companies play with people’s lives. I pray they come to their senses. How do they sleep at night.

      I’m happy to hear the drug is working. I’ll keep praying for you.

      Cindy

  20. Paula, I think about you often and keep you in my prayers always. I’m so angry to hear about the insurance company and drug company. There should be a way to provide you with the medication that’s working, you don’t need the added stress at this time. It’s unconscionable. Hoping that you do find a way to get it and keep marching knowing we’re all behind you. Hugs.

  21. Thanks for the update – I will continue to say a prayer for you and one for the insurance guy who thinks you don’t need a double dose of your meds to see that you do. Best of luck in 2021

  22. Paula, you are such a strong woman! You inspire so many! Thank you for sharing your “ march” with us! I hope,and pray that the insurance issue will be resolved successfully and know you are in my prayers daily! Much love to you, my friend!
    Becky

  23. I will definitely be praying the insurance company will cover your medication. My God is bigger than anything! I am thanking the good Lord the medicine is working. I will continue to pray that HE wraps HIS ever loving arms around you. Thanks for sharing. God bless you!

  24. Thank you for sharing your journey with us. I have been praying and will continue to do so. Insurance and drug companies are horrible to work with! Praying for approval and continued good health! I hope you have an amazing Christmas season!

  25. Paula I will keep praying for healing and that your insurance issues work out so you can continue with your medication. Wishing you a blessed Christmas.

  26. Paula, it makes me so angry that the insurance companies have the power to deny coverage for the medications prescribed by doctors. I’m so glad to hear that you’ve found a drug that’s working, and I’ll keep praying for continued positive health news and a reversal of the insurance decision. Have a wonderful holiday season with Mr. SP and Sherman!

  27. Comtined supportive thoughts and prayers to you, as always. Now including your terrible struggle with the insurance company. Start a go fund me if you need to!
    B

  28. Dear, Paula. I will continue to pray for you and your loved ones. Please never give up. We buy insurance to help us pay for needed meds and care, and with all the millions, or billions of dollars they still deny our needs. Love and lot’s of hugs to you Susan.

  29. If a person could present themselves before an insurance board so they can see there is a face and a human being behind the requests of their medical professional…we are not a number, We are real and dealing with a horrific disease that when something works, to have our insurance stand in the way of continuing to get better is appalling, absolutely unequivocally appalling!! I absolutely will continue my prayers for your health, for the insurance company to reconsider the issue. I also say prayers for your “boys” and your Mom as the frustration they feel and still stay strong for you is also so stressful. I have a daughter the same age as you and I can so imagine how I would feel when something so awful as an insurance company standing in the way of my child’s health…..keep fighting and know how many of us are in your corner….love and prayers…

  30. Paula,

    You are the best sister-in-law one could ask for. You and Dave and Sherman are such a lovely family. I pray for you and Dave and Sherman, and for the (bad word I’m thinking but not typing) people at the insurance agency. . Unconscionable. Someone suggested looking to Canada. Maybe? Love, Sue

  31. Dear Paula, continued prayers for you. I can not fathom how insurance company executives can sleep at night knowing the decisions they make to deny people with life saving medications. You are a trooper! Stay strong and know that you have a legion of people praying for you..

  32. Thank you for sharing. You are truly a remarkable woman and I’m in awe of you. We pray and send positive vibes daily. You got this I believe it!!!

  33. As a cancer survivor, I feel your pain. Contact your senator and see if they will find help with the medication. Then you call the insurance commissioner. It’s been a long time so I don’t remember who, but there is a group in VA that helps with medication cost. Maybe Virginia Beach.
    I had an MRI last week. I held a cough so long, I jerked and had to repeat it. Ugh.
    When you talked about the “last time” I know what you mean. I wrote a quote “You never know when the last time will be the last time” How unfair.

  34. Oh Paula, I am so sorry you are having to deal with insurance on top of everything! It’s pure craziness and I pray it gets resolved. I am glad to hear it is working for you though. I think about you often and will continue praying for you my sweet friend!! xoxo

  35. Paula, May God continue to heal this horrible disease. May he bless and keep you. I so enjoy your blog and I am praying for you.

  36. Prayers! What a journey abd thank you for sharing and being a resource for those diagnosis and their loved ones who want to provide support. Btw your lake property looks so peaceful

  37. Anything you need gal, we’re there for you. Awful news about the insurance – it ain’t right! Our prayers and hopes that things will work out. Thinking of you both.Lisa, Jeff and Bandit.

  38. I am just seeing these posts from you, oh my goodness! I am adding you to my prayer list, praying for the insurance company to approve your medicine and for the treatment to continue to work and show regression of the areas of concern. Take care and Merry Christmas!

  39. PAULA, I thought about you the week of your most recent tests.
    Okay, the insurance piece just gets me. The good news is your oncologist can demonstrate the drug is working and this is a huge piece of future trials and formularies. Keep on your oncology team to use what they have to dig deep (as I used to tell my kids in 3rd set tie-breakers)! Dig Deep! Celebrate the season with the two most important males in your life and give Sherman a big hug from Chloe and Elliott in Coloradao.
    PS I was also curious about Canada prescriptions. These new drugs are out there to advance the treatment and survival rates so when a drug works and its denied then it does a disservice to the oncology community as a whole. Use that line! Praying for your doctor make the pitch! Lots of love and keep posting Sherman pictures! He is just so handsome! laura
    laura

  40. Thanks for the update, Paula. I have been praying for you. Glad you had a fairly good report. Will be praying for the insurance costs to be waived. It’s hard enough to endure all that without having to be anxious about money stuff:( You’ve got a wonderful community supporting and praying for you!

  41. Paula, I am fairly new to your blog and I love it. I love the state of Virginia and I find it so beautiful. I have been to Williamsburg twice and to Virginia several times and have always wanted to move there. However, it was not in the cards so I’ll take second best – Wisconsin. Please know that you have another source for prayer and hope for a good outcome for you. I hope that you have a wonderful holiday season and I look forward to your next blog and your creative ideas.
    Ann Kehl

  42. Sending healing thoughts your way. Cancer sucks and seems to touch all of us in some manner. My husband had prostate cancer surgery last year, he’s doing well but the stress at testing times is hard.
    The stress from dealing with the disease is hard enough without having to fight with your insurance company. I hope you are able to resolve the issue. No one should have to spend $30,000 A month for medicine.
    Have you ever tried Working Hands balm for your dry skin? The skin on my fingers use to split and bleed all the time and I tried everything. I finally found Working Hands, they sell it pretty much everywhere these days, I got mine in the paint department at Lowe’s years ago. It was like a miracle and I swear by it. I could put it on at night and by the next morning my fingers were pretty much healed. I highly recommend it.
    Take care and best wishes❤️

  43. Argh,…I am in disbelief about the insurance!!! A real shake your head moment. I continue to keep you in my prayers and believe that if anyone can beat this, it is you! Enjoy your Christmas with your boys!

    Hugs and Kisses, my friend.

    Lynn

  44. Still praying over here on the prayer team, Paula. I imagine it’s difficult to live your life with such a heavy burden. I’m praying that you can get the insurance company to cover what’s needed for your treatment and that it will continue to keep you stable. Thanks for sharing your march with us. You’re helping many people to understand their own diagnosis better.

  45. I will keep you in my prayers! I’m glad you shared your progress. I can’t believe the price of that drug , and I am boiling at the insurance company’s response. The photos are beautiful, and that walk down the fall lane looks magical.

  46. Paula … I’m praying that your insurance company does the right thing. With so many sending prayers for this outcome, I’m hopeful. In the meantime, I’m wishing you a Merry Christmas with you two handsome guys. xo

  47. Hello Paula, I’m so sorry to hear about your cancer diagnosis and the struggles you are having with the disease and with the insurance company. When my brother had cancer, his prognosis was low but the doctor told him that even if there is only 1% that survive a particular cancer, he then said, “Why can’t the 1% be you? I would like to report that after 5 years of going downhill with the disease, my brother eventually became that 1%. He has been cancer free for 16 years now. So, I am going to tell you to never give up hope. It is possible that you can be that 1% as well. I believe in the power of prayer and will make certain that you will be remembered in my daily prayers that God will be with you, to give you hope and comfort, and to give the doctor the wisdom and knowledge to choose the right drugs that will cure you, and that the drug company will pay for them. We are all rooting for you. <3 <3 <3 <3

    Many hugs to you,

    Tee @ Teedidldydee

  48. Thank you so much for the update Paula. You are such a strong person. I can’t even begin to imagine the anxiety you must have. It is amazing to me that the insurance companies can say no to the one thing that is keeping you alive. No one should have that power. I can’t remember where I saw that you were finally approved and your husband was on the phone getting the news. I was so happy to hear that. Continued prayers my friend.

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