Malia’s Miles: A crapshoot

Malia is a full-time RVer and was recently diagnosed with cancer. She is graciously sharing her journey with us. See her previous post HERE.

by Malia Lane, Malia’s Miles Blog

When I saw this cartoon, it seemed to depict the conflicts in perspective I’ve been dealing with lately. On that day in May when I was given the terminal lung cancer diagnosis and told they didn’t even have hope of either of the “big 3” standard treatments (surgery, chemo, radiation) offering a cure, there was a sense of relief that I didn’t even have to consider chemo treatments. I’d seen the results of that with loved ones and concluded it was certainly not worth it. Letting Go of What I Think Should Happen talks about that part of this journey.

But there have been decisions to make since then that haven’t been as easy to call. Once I got to Medford and met with the oncologist here, he recommended doing a surgical biopsy which would give much more detailed information on the type of cancer I have. It would show if there are any genetic markers that would indicate if I’m a likely candidate for newer treatments like immunotherapy. Or maybe they could use more targeted drugs that supposedly know just where to go to get the cancer only. The other carrot held out for getting that biopsy was being able to tell better how long my life expectancy is at this point.

That sounded reasonable to me then, but then between that time and the day of the actual biopsy, I kept second guessing myself. I was getting more and more fearful about the procedure itself. I hadn’t been in any real pain since that left node flared up suddenly and I really saw what a sad state our medical system is in. Pain is a Game Changer, that’s for sure! I didn’t want to let myself in for any more of it and dealing with opioids to try to ease it.

The surgeon said it was really no big deal, only an incision of about an inch. But it still freaked me out to think of them cutting into my neck that is just full of cancerous lymph nodes. Of course, there are different opinions on if that could just open the floodgates and spread the cancer from there even more quickly. I remember how “angry” that lymph node felt after the simple needle biopsy I first had done in Durango. It was sore, bruised and throbbed for days.

But it kept coming down to that if I didn’t get it done, there would always be an open question. I may not be willing to try anything at any cost, but at least I should have all the available info to make that decision. This test would either open up new possibilities or at least help answer the question of how much more time I’m expected to have.

ALL DOCTORS HAVE made it quite clear there is no cure or chance of getting rid of the cancer completely. No matter how many friends write and say they know of somebody whose cancer disappeared with this treatment or that drug, or by a raw organic diet, there is no one-size-cures-all cancer treatment. What works for breast cancer or early stage cancers are completely different from stage 4 lung cancer that has spread the way mine has. Once it’s spread to so many lymph nodes and outside the chest cavity, it’s pretty much a done deal. For both oncologists to agree neither surgery, chemo or radiation would be of any real benefit to me actually gave me a sense of relief that I wouldn’t have to debate that decision with anybody. I’ve seen enough of those crap shoot results in people I love to know I’m never rolling those dice.

So it’s just a question of possibly extending the length of my life without affecting the quality of that life too much to make it worthwhile. God help me, I’ve even had suspicions they’ll recommend all kinds of stuff that ultimately are of no benefit just because they’ll profit from it financially. Maybe they wouldn’t hurt me deliberately, but I don’t exactly want to be a guinea pig for no real purpose, either. You can tell how distrustful I am of the whole medical system at this point, huh?

But after all that agonizing, I did have the biopsy done and got the initial results last week. The oncologist told me that the good news is that I have great PD-L1 expression levels, which tells them immunotherapy using the drug Keytruda could be effective. But if some of the other more specialized test results he’s waiting on have some other less positive gene marker or whatever, it would lessen the possible effectiveness and it becomes even more of a risky crap shoot. There is also the definite possibility that immunotherapy could make matters much worse if it attacks other organs and I could feel like crap during the treatment.

There are no guarantees either way with this deal. The debate with myself is exhausting, so I’m trying to let go of the merry go round mind in this regard until I have more answers. I’ll do the research, but then ultimately I’m just going to trust my own gut instincts even if it doesn’t make sense to anybody else. I just want to be able to decide how I will live the rest of my life without this being my total focus every single day.

I don’t share these things to do what anybody else thinks or justify what I decide for myself. I share because others say they find my sharing this journey with all its twists and turns is beneficial in their understanding a difficult process they might deal with themselves or with other family members.

And again, thanks to all y’all out there who I know also have my back and best interests at heart.

##RVT860

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8 Thoughts to “Malia’s Miles: A crapshoot”

  1. Teresa Hoagland

    I will be praying for you. Your load is heavy but I admire your decision to do it your way. May the Lord bless and keep you daily. TERESA

  2. Wendy Elliott

    So sorry to read of your trouble Malia, I always look forward to your blog in my inbox. I wish you peace and pain free days ahead.

  3. JBC

    Thanks for sharing this chapter of your life as it may be ‘our’ chapter some day. What you are dealing with – all the decisions, trust issues, etc. become overwhelming and can dictate every minute of every day. It is clear that you have a huge life priority in place. One that many healthy people have trouble identifying. ‘Staying focused on your quality of that life’ and running with it.

  4. Bob Godfrey

    All the best Malia in your “battle”. And, once again, thank you for sharing your experiences with this awful disease.

  5. Linda

    Thank you so very much for your honest journaling. You have been such a help. I hope you have a lot more quality and quantity of life.

  6. rvgrandma

    Thank you for sharing and letting people know they don’t have to jump at what the doctors say. The secret is to educate yourself with all options and then decide. I had a friend who was diagnosed with stage 4 ovarian cancer. She spent the last three years of her life doing constant chemo which probably gave her more time to live but her quality of life was not that great.

    I always told myself when I passed 50 if I ever was diagnosed with cancer I would not do treatment. I did have uterine cancer but surgery took care of it – if not I would have refused treatment.

    We each have our road to travel. The choices we make are ours that we have to live with. Hang in, continue to educate yourself and you will make the right decision for yourself.

  7. Vanessa

    Hopefully, any tests you get done will help with the process of the right to die issue. They won’t be able to say “but you didn’t try…” “you didn’t consider”…you will have all the bases covered. Hope the smoke hasn’t been too bad in Medford. Portland has been horrible. I’m in North Bend right now and it isn’t smokey but cloudy and cold. God bless you.

  8. Retired firefighter Tom

    It’s nice that you’re sharing your thoughts on this whole ordeal you’re facing. I’ve known several people [including a sister-in-law] who have had a similar experience but they kept most of their thoughts to themselves. You’re opening my eyes and mind to how someone is dealing with a terminal diagnosis. I’m sure that there are many others who share my opinion. Best wishes. Our thoughts and prayers are with you.

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