Malia is a long-time full-time RVer who was diagnosed last spring with terminal lung cancer. She is graciously sharing her journey with us. See her previous post from August 30 here.
by Malia Lane, Malia’s Miles Blog
All of my energy for weeks now has been taken up with getting my book finished and ready for Kindle and self-publication. Even though I haven’t talked much about it publicly, this is not a new project – it’s something I started almost two years ago but I’ve dawdled and found excuses to do anything except that all this time. Yet as soon as I got the terminal cancer diagnosis, I knew that book was my priority and that if I died without at least trying to get it out there, I would regret it once I cross over.
My greatest hope always has been to inspire other people to follow their own dreams, particularly women, especially those who feel like they can’t do it alone. I hope that my example will demonstrate that doesn’t have to stop them, and my book goes into some detail about how I made the biggest of my crazy dreams happen, miracles and all.
At this point, I’m almost to the finish line on that and finally have some time and energy to do an update for all the wonderful friends who have kept me in their prayers and continue to be interested in what’s going on with me.
The days of my being able to multi-task are over as I pretty much have to concentrate on doing one thing at a time and then go take a nap. It’s definitely a new way of life that I’m living now. I’ve never had any heavy or chronic medical problems before and whenever anything like that did come about, it was pretty easily and quickly handled.
Not so with terminal lung cancer in this advanced stage. When I started having pain in a new place on my neck or in my ribs or on my foot or wherever, I’d ask my hospice nurse what was causing it – why this or that was happening – was the cancer spreading or what. She’d basically say, “Malia, you have cancer marauding through your body and it manifests itself in many different ways and makes many different sneaky attacks. But don’t worry or stress too much. We are here to manage your pain and keep you as comfortable as possible and we’re available 24 hours a day.” Holly always has a way to calm me down; I just love her so much and feel blessed to have her at this stage in my life!
Other than the obvious fact that having cancer makes you feel like crap, there seems to be no rhyme or reason for how I feel on any particular day. Physically, since the tumors are growing at a pretty fast pace all through my neck and throat lymph nodes, that tension is what is causing the pain I feel on a regular basis in those areas.
The latest development is that it has broken through the skin where the biopsy was done. I have come to believe that was a big mistake since it weakened the skin there and made for a path of least resistance. It’s leaking and pretty gross, but hospice here has been phenomenal. Besides the fact that they come out twice a week to change the dressing, they have basically kept me pain-free on drugs – opioids, specifically. All my life I’ve avoided those things like the plague, but the last thing I’m worried about now is becoming addicted to anything.
As I reported in my last post, I found that cannabis products like Rick Simpson Oil just doesn’t cut it for me. Although it does help manage pain, it seems that even though most people have success with it for use for nausea and to increase appetite, it had the exact opposite effect on me. I thought maybe I was just using too much, so I got off of it totally for a while.
After a few weeks, I tried again at lower doses, but still noticed the same negative effects, as well as keeping me feeling knocked out and barely able to function. All without the desired side effect of getting me high – bummer! For some reason, the Percocet does not totally disable me anymore and it just manages the pain. I am especially thankful for that because I’m a total wuss when it comes to pain.
THE BIGGEST CONCERN at this point is that the growths could start affecting my ability to swallow. Since I have to be able to swallow four ounces of the Death With Dignity concoction on my own, that freaks me out. I always figured I’d know it was time to go once I could no longer do basic things on my own, like get out of bed, shower, prepare meals, etc. But it sounds like I might be faced with the decision to take the concoction earlier based solely on my ability to swallow, no matter how I’m functioning or feeling otherwise. Yet another example of why it’s ridiculous to me that they won’t make an injection optional, but that’s still considered suicide. They’re still afraid of the potential for murder of people who are not ready to go. I think that argument is preposterous, but not only that, there’s still talk sometimes of trying to repeal the Death With Dignity law completely!
The only thing the oncologist can even suggest at this point is radiation treatments which might shrink the growth and improve my “comfort level.” But get this: The known and most common side effects would basically be what I’m trying to avoid at this point: difficulty swallowing, sense of taste affected, sores inside and outside of the mouth, inflammation, nausea and fatigue. I wonder if it’s possible that I could feel even more fatigued, but that’s the least of my worries. It sure sounds like I’d feel a hell of a lot worse doing a series of radiation treatments, though.
I do believe there are worse things than death. Like writhing in pain on your death bed and no matter how many pain pills you can swallow or morphine they inject you with (but carefully not enough to kill you), your poor body and mind is still in agony in one way or another until it finally just has to give up.
I’m still grateful I can make my own choice as to how much misery I’m willing to put up with, especially given there’s no hope of a cure anyway.
I’m trying to adjust to this new way of life no matter how long it lasts. But it surely isn’t easy going from an energetic, on-the-road traveler to someone who needs to be in bed most of the time.
Emotionally, I am all over the board. Sometimes optimistic, feeling good and thankful, other times gloomy and just wish the end would come now. It’s always the fear of the unknown that is the spookiest. I didn’t know exactly what to expect when I heard how advanced the cancer was, but it wasn’t this.
People talk about how brave I am and how well I’m handling this. That sounds like a joke to me most times I hear that. But the fact of the matter is I think that if I come across as brave, it’s only because part of me knows that this just is my time to leave this earth. In that sense, I am at peace and that is what prevails most of the time.
I may be sad at what I’m leaving behind, but I also have a glimpse of the glory that waits on the other side. In some things, I have no choice, so in those matters, I try to just keep the faith. That’s still my most fervent prayer: Peace of Mind and Unwavering Faith.
Love, love, love….
God bless you Malia. I will pray for you and that you have a personal relationship with Jesus Christ. He is holding your hand through this even though it may not feel like it. I hope to meet you some day ‘on the other side’.
Malia, Thank you for sharing your journey. Like Steve I too pray you have a personal relationship with Jesus. My husband has stage 4 Pancreatic Neuroendrocrine cancer that the oncologist told us in July that is terminal. We chose to go for alternative treatment and went Northern Baja Gerson Center and are following Dr Gerson’s protocol. No chemo or radiation ! Don’t give up?
Malia, many of us so much appreciate your willingness to tell your story and share your feelings along the way. It is one trip all of us will be taking and it’s part of our life’s journey. Love you girlfriend. Julianne
I have followed your blog for years as I am another female who travels alone. Your experiences have given me so much – security to travel long distances and ideas of places and sites to see. Thank you so much for all the courage and information you have contributed. It breaks my heart to read this but your usual, “I will be in control of myself” is such an inspiration to others. I’m glad you have a wonderful hospice nurse. If you need anything that I can provide from Georgia (books, movies, pralines, ect) I will do my best to get them to you. With love and appreciation for all you’ve shared—-
Finish that book, the world is waiting. You inspire!
I too hope that you are a Christian and have a personal relationship with Jesus. May He comfort and strengthen you.
Dear Malia- may I, as a Hospice nurse of 24 years experience, share some of my picayune knowledge. For changed taste perception try eating with plastic utensils. (Metal can trigger horrible changed taste) If your Percocet is 5/325, ask your doctor if you can take an additional 500 mag of acetaminophen at 6 am, 2 pm, and 10 pm. Ask about a dosepak of steroids to help shrink the tumors and increase wellbeing. . A dosepak is like 6 pills today 5 pills tomorrow etc down to 0. Once the dosepak finishes ask your doctor about adding Naprosyn or some other non steriodly anti inflammatory either at 12-6-12–6 or at 6a 2p 10p. Also caffeine boosts painkillers power. The amount in a large mug of coffee is enough to assist well. I hope you have O2. on board and use it before exertion. People with respiratory poblems are prone to costeochondritis, which is horrible pain caused by inflammation where the chest and intecostal muscles tie into the rib cage. This would need either steroids, or nsaids to treat. I also had a patient who claimed allergies to all narcotics and steroids and Tylenol . Her pain level ranged from 8 to 11. (Only spozed to go to 10) I put her on Didronel, which is the grandmother of Fosomax and doesn’t cause all the side effects Fosomax does.
She was free of pain for the first time in years!
I bought my camper in 2016. I had retired for health reasons in 2014. I have had a bad couple years, culminating in an unexplainable weight loss of 80 lbs. I’m now a stage 4 cardiac cripple, freshly diagnosed in June. 2018. At the same time my DH was diagnosed with level 3 cardiac disease. My heart doctor and my primary both wigged out when I told them I basically had terminal heart disease. I know what I know- I had done signups for Hospice for years and reviewing non cancer patients – especially cardiac, pulmonary and terminal dementia patients. My doctors have both informed me “there will be no inappropriate palliation”. I have no idea what they mean unless are thinking of Percocet- I take 1/2 5/325 four ties a day with TYLENOL 500 and it’s a pretty good approximation of how well I was controlled with Vicoden. I also use Elavil for nerve pain. A couple decades back I took it at 25 mg bedtime. Times change and it’s gradually been booted to 100-150 mg each night. But hey! It’s mostly working!!
I bought 4 outfits in size small and have spent the last 3 days purging my drawers and closets of anything larger than a size 10 stashing them in rubbermade totes. If I wind up keeling over dead he can just drop the boxes at the Sally Army or put out for the garbage collection. Trying to make this easieron DH since he will probably outlive me.
May the gracious ONE accept you into their arms and bring you your friends and relations (and yes, pet animals too) to comfort you on your ascension.
Thank you so much for sharing your journey. Life sure throws some curves, but you are giving us a kind example of an open and honest philosophy for approaching the ultimate one.
Peace and love,
Malia, you are a fierce and courageous warrior, facing terminal illness with dignity and grace. I pray that you are able to complete your book..your mission, as the legacy you were meant to leave to the world. Keeping you in my prayers for comfort and strength.
Hello, Malia. I have followed you off and on for some time but now it is a slightly different reason to read your writings. What you are writing touches me more because we had a close friend of ours pass last September and he also had lung cancer plus other cancers.
Cancer is not a nice thing and I praise you for dealing with it the way you are. I get to see an inside view of cancer and it is not a nice view for anyone to have to deal with.
May God hold you and strength you throughout your ordeal.
Love Wilf and Elizabeth Blakey
Kirkland Lake,Ontario
You are by far the bravest woman I have seen. God bless you.
As always thank you for sharing your journey with us all. Our thoughts are with you always.
Malia, Thanks for your openess and honesty about your journey. Acceptance of the truth seems to be the key to peace and happiness in any ones situation and you are a fine example of a tough situation. When my time comes, my primary goal will be to set a good example for my kids and grandkids just as I have since they were babies. I will buy your book to follow your path.
Words cannot express nor ease the pain and fear you are experiencing. My only thought for you is that you are loved and admired by many. You are courageous to report on your life’s journey right now even though it is towards the end. Prayers and blessings Malia.
Thanks for sharing your very personal journey with us. I have been a registered nurse since 1979 and have had many occasions to support people with end of life care. I applaud you for taking charge of your own decision as to when enough is enough. That being said, I hope that you will continue to have many more good days than bad days.
I so agree with you about the insanity of repealing Death with Dignity laws. I wish religious zealots would back off and let people decide the right path for themselves.
Hugs to you. Glad to hear you have some very special nurses walking with you.
May God be with you giving you comfort at this we all dread facing! See you in Heaven someday!
God bless you Malia if you need anything in San Diego I would be glad and pleased to help. weatherby100@cox.net Steve St.Martin
Dearest, lovely Malia,
My heart goes out to you. When I lost my sister Carol and dad, I didn’t get to say goodbye. When my sister Barbara passed, I had the opportunity to. It turned into one of the greatest gifts in my lifetime thanks to a hospice person I met very briefly. He shared with our family what he said all of us need when dying. 5 things. 1 & 2 ask one another to forgive each other something, and give forgiveness, no excuses, no holding back give it freely. 3 & 4 tell one another what you love about each other, 5 say goodbye. We changed it up a little, followed 1-4, but changed 5 to having Barabara share a story or two of her own in her words to leave with us, about her. She chose two from childhood, before I had been born, they are in my memory, keeping her spirit perfectly clear to me, I will recognize her, always. We added a 6th step, and instead of goodbye, we chose to say, see you later, because our love for each other never ends, I plan on a family reunion. Malia, I’m sorry I didn’t meet you sooner, I love your honesty, integrity, and admire your ability to write about your very personal and tough end of life of this world journey. May your reunion be better than you could imagine. And whether I go before or after you, I will look for your spirit. Camp on GF,
Nancy
Malia, i’m continuing to pray for you! Thank you for sharing your journey with so many of us. we of course wish you would have many more good days sharing and enjoying life! Cheers from Oregon right now.
Thank you for sharing, my prayers are with you and I know you know… The light of God surrounds you, the love of God enfolds you, the presence of God watches over you… wherever you are God Is.
Hi Malia – I know how hard it is to deal with this the only thing to do is what you are doing – getting on with life while you can… well done.
I have had my right lung removed for cancer and have had chemo for the cancer in my left lung which just waiting for more treatment. I know how challenging it is – but just get on with life like you are doing.
Malia I,m not sure but you may try Caisse’s,s tea.i heard a lady at the hospital talking about it. I got the name looked it up on amazon and read a few reviews 2 guys said they were in stage 4 and both said in 3 months they were cancer free. Also on the nightly news with Lester Holt I believe it was they said there is a new cure for a certain gene I believe it was there was. 3 year old girl that had cancer on her back and it cured her in 3 days and another guy had it all thru his body and it cured him in 27 days. Good luck I’ll pray for you.
Hello Malia,
I just read your story from a link in the RV News Letter although I do not know you it is very sad to read about your situation.
May I offer a few words of comfort.
If you are of the Christian faith the Bible says to be absent from the body is to be present with the Lord (ll Corinthians 5:8). I would pray that your name is written in the Lamb’s (Jesus) book of life, (Revelation 21:27) and look forward to residing in the new heaven and earth where there are many mansions prepared for you (John 14:2) to be with Jesus and the Father forever more once you leave this earth. Our sojourn here on earth is only temporary compared with eternity to come.
While you are still with us here on earth may I suggest you research and try to obtain Zeolite which is a powder made from volcanic rock that will detoxify your system and make it alkaline. They say that if your system is alkaline cancer will not grow. At this stage it would not hurt to try this, I use it in my oatmeal every morning.
Here is a source that I personally use. http://www.regalsupplements.com/zeolitepure.html
I wish you the best considering your situation and I will say a prayer for you tonight that our Heavenly Father would open your spiritual eyes to his word the Bible.
Sincerely,
Richard
Northport, NY
I am praying for your peace and comfort during this time of physical suffering. If you are a Christian, then Jesus has prepared a place for you and will lovingly welcome you into eternity. None of this has taken God by surprise.
I am glad to have you send us a message about how you are doing. It has been awhile since I read anything about how you are coping. Agree or not you are brave as are any other person dealing with a chronic disease or cancer. A role model as well in your choice to chose when enough is enough but yet you have gotten your goal of writing your book and I would guess getting it published. I hope you have the support of your family and friends as well as your care staff. Prayers for you finding peace are being sent.
Malia–I have just read your most recent post and wanted to let you know how much your strength and honesty will help many of us. Your willingness and ability to put thought and fears and concerns into words is so appreciated. I do hope that you continue to gain peace and comfort and that you receive the dignity you deserve.
Malia dear one, I am ashamed of myself as this is my first reading about your quest and struggle. I prayed for you last evening and in church this morning and will continue with the hope of less pain for you to endure. You are a very brave lady to share with all of us whom you don’t know. I am retired Naval Air veteran and have seen danger but nothing like your enduring..”Your so special to all of us”..I am lost for words but keep in mind you have another admirer praying for you. God has the reasons and sometimes it’s tough to understand. I am 77 now and I lose some activities every year but as “Clint Eastwood ” said in one of his movies that “we all die a little everyday” and hopefully where we are headed is eternal peace and no pain or ailments to deal with..I will pray for you for sure..
Malia, I just read your blog and am wondering if you have considered trying the medicine that kills worms in farm animals. Several of our friends suffering as you are take it and it has given wonderful results. Please check into it and give it a try. Remember GOD IS GOOD!
Malia
This is the first time I have read of your struggle with cancer. I too have given alot of consideration to relocating to a state which allows death with dignity should the need arise. We are humane towards animals, and inhumane towards man. Never quite understood that. Especially since we are able to make the decision for ourselves. May God bless you . I will pray for you.
Malia, Thank you for being so open and sharing on your journey. Know that it will help others understand a bit more when faced with a terminal disease themselves or loved ones. I suspect you already have done this too, but every time I faced death or extreme danger, I asked Jesus to take charge of me, point me in the right direction, and give me the strength to follow the path He wants me to follow. The poem Footprints is an accurate representation of my life with Jesus. I’m praying for Jesus to take charge of your life. God Bless you.
Hi Malia, My name is Andrea and I am a hospice nurse and breast cancer survivor. Thank you for sharing your journey with us and for being so open about your feelings. I am glad to know that your hospice team has been a support to you. I believe you are brave because you have accepted this is your time and, although your feelings run the spectrum from optimistic to gloomy, I know that one of the reasons you appear to have peace is truly because, as you say, you know it is time to leave this earth. We never have enough time, no matter how old we live to be. You are a shining example of living life fully, completely and on one’s own terms and that is the very valuable message I hope your readers of this blog and your book keep in their hearts, always. We only have today for tomorrow is unknown. I am glad to know that death with dignity was available to you and you have chosen your own path. I am hoping that you are surrounded by the love and support of friends and family everyday and when you choose your time, I hope they are all with you. I will keep you in my heart always!
I admire you. That’s all I can say. No empty platitudes or hollow condolences. You are far more brave than I think I could ever be. God Speed on your journey.
Thank you Malia for sharing your journey with us. I purchased your book to give a friend of mine who is losing her battle with breast cancer. She also is a strong lady much like yourself. I learned through my own combat disability that trusting God is the best medicine you can have. Yes, it’s tough at times but like you wrote it also opens your eyes to the beautiful things around you. Don’t give up, you are a fighter.
Thank you for sharing your experience with your readers. It is a difficult journey you are on, but we each can decide how we want the end of our life to be as long as we make those wishes known. I have watched far too many friends and family stuck in the medical vortex, spending all their time with treatments that may extend life but not quality of life. I would rather spend my last time with family and friends, not running to doctors and hospitals. My hope for you is a painless, peaceful passing. Bless you.
I met Malia in Southern Oregon (a Death-with-Dignity State for many years with voter approval) and she and I had lunch together in Jacksonville, my gold rush home town. She was the inspiration for me to sell my mobile home and buy a used Alfa RV which I lived in on the Rogue River for several years, then moved it to the South Oregon Coast. I never traveled in it, but just being able to live in Bandon, Oregon for the past 12 years has been wonderful. I kept up with Malia’s travels for some time, then lost contact. I found her “busness” card today and went to her website and found out she had passed away in 2019. I wish I could have written this while she was still living. She had a wonderful life. I remember her telling me about a Red-tailed Hawk that kept her company while she was in So. Oregon, and I sent her an Audubon (my ancestor) stuffed Red-Tailed Hawk as a gift. I hope, Malia, that you were accompanied by a Red-Tailed Hawk on your journey to Heaven. I will always remember you with fondness.