Helena Trent

In Darkness Born the Light - My Journey From Mutation To Transformation

Peeling Onions

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I am all done with brain radiation! Woohoo!! I have no more medical treatments of any kind of my calendar.

A fellow radiation patient and his family are so sweet, they got me flowers and gifts to celebrate the completion of radiation. I only met them when I started radiation a couple of weeks ago in the waiting room. I was scheduled after him everyday, so we got to know each other over the past couple of weeks. They got me yellow roses for friendship. People are so kind. Cancer patients have a special understanding of what we go through on a daily basis. We don’t miss an occasion for celebration.

On a personal level, I am relieved another difficult chapter is behind me. Brain radiation really took a lot out of me. As with every step on this journey, I learned something about myself. It’s like peeling an onion, there are layers and layers. After I slept and slept, (BTW, I think I slept as much as my cats did, that’s really saying something!) I realized I may not truly knew what my resting state was. I have always been a very productive person my whole life, running a business, volunteering, doing family stuff, trying to have a personal life, etc. I almost always had a full schedule. After clearing my calendar for 2 weeks, did nothing but rest, I felt the overwhelming exhaustion from radiation, yes, but from years of living life on the fast lane as well. Whenever I have something to do, I think my body automatically floods my system with adrenaline so I could get done what I needed to get done. Sometimes I would even get energized by it, but at a cost to my body I didn’t know.

Now that I know, I am going to step back from all regularly scheduled activities and let my body find its balance and restore the energy. The best thing I learned these past 2 weeks is I don’t need to be the driver, my body is. This life belongs to this body, I am just a passenger along for the ride. It has done the best all my life to serve me, now it’s my turn to serve it.

I remember when David was a little baby and every time he was sick, I felt so powerless. I felt the same way about my body clearly the last couple of weeks. I couldn’t do much of anything while this body is going through what it is going through. I couldn’t take away its pain, discomfort, exhaustion, feeling of helplessness, sadness, etc. but I could be there for myself like I was there holding David as a baby when he was sick. It didn’t change the circumstance one bit, but it certainly made it a lot easier to endure. I learned I could be there for myself unconditionally. This body doesn’t have to tell me what I want to hear, pain or discomfort doesn’t have to go away, things don’t have to be right for me to sit there with this body and just breath. It’s such a simple practice to be there for myself.

4 Down 6 To Go

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First of all, thank you for all your kind words and prayers. I appreciate you all in my life! I have not given up yet, I just don’t want to make things worse by poinsoning myself. I have to say by making that decision, I felt a huge weight lifted off my shoulders. Even though I was handling chemo well, I didn’t realize how much I was dreading it. Now that I have no more chemo, I am so much happier and lighter. What a relief!

On top of that, I made the decision to allow my body do whatever it wants, eat whatever it feels like. I will never ever tell this body you should eat this or take this supplement because it’s good for you. If I ask it and it says, “no thank you”, that’s the end. I will not give this body anything to process and handle that it doesn’t ask for. Thankfully and somewhat surprisingly, it asks for vegan! This body simply has no intention of making itself suffer. No discipline needed!

I am in the process of going through brain radiation, so far so good. They scheduled me for a total of 10 treatments, I have done 4 as of today 2 the rest of the week and 4 next week. Then I am done. They told me brain tumors will be never be a problem for me again. Unless I have problem, they won’t even bother to have me for regular checkups! Very cool! Why didn’t they do this in the first place… oh, yes, there is this little caveat of turning my brain into mush. Since I don’t expect to be able to go back to work ever, I am fine with that. Next time I go to my tai chi class, I would just say, can I be in the middle please? LOL! (For those who don’t do tai chi, it’s an inside joke. The middle is reserved for new beginners who are not sure if they could remember the sequence of the set so if they get in the middle, they could follow everyone around them.)

The side effects so far has been manageable. I got some inflammation on my head, they prescribed steroids, I used CBD oil so far, it has done the trick. The other side effect is fatigue. They told me I would be tired, I had no idea I would be this tired! I have been taking 4-hour naps and sleeping 10-12 hours at night! I wasn’t going to fight it. Again, I let the body decide. If it wants to sleep, I am there. The rest of the time when I am not sleeping, I am not much better either, all I can do is sit around and practice the art of being a couch potato! 😝 Sometimes, Snowball, the cat, would come sit next to me. We are happy and content, feels like we have all the time in the world together. Every crazy cat lady’s dream life! 😍

Surrender to Life

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I had a full set of scans the last couple of weeks, one was the brain MRI which turn out crappy as you saw in my last post, the other one was the CT scan which scans the trunk of my body neck down and organs. Well, if I was waiting for the other shoe to fall, it has fallen. The CT scan came back almost as bad as the brain MRI. Basically chemo has stopped responding. Every tumor has grown and new metastasis are starting to show up in other parts of the body.

My oncologist canceled my scheduled routine chemo today because there is no point in doing it. He suggested a new plan: 2 very heady duty chemo drugs that would not respond as well as the chemo I was on the first time around because if they were better candidates, he would have put me on them in the first place. They come with heavy duty side affects and their responsive period would be shorter on top of not being as effective! The way he explained it is each chemo drug will get rejected by the body sooner. That’s how chemo usually works. There only so many possible drugs for each type of cancer, the more they try, they more the body overcomes them. Given the fact that the first chemo drug they gave me worked to some extend for only 6 months including the full dose and the maintenance dose part. If the second chemo they try would fail even sooner, it may get me 3-4 months if I am lucky. For that few months, I would have to take on the enormous risks of the heavy drug side affects. He is already planning for it to fail, so the next step is to put me on a gene inhibitor drug that’s a different that’s similar to the Tagrisso that was on. Tagrisso worked wonders for me for some time, but this other drug he is not nearly as confident because I already overcome Tagrisson which is the best drug on the market. He expects that to fail as well. The next step after that is immunotherapy which is a hot topic on the market right now since it won the Nobel Prize in cancer treatments. However, lung cancer doesn’t typically respond to immunotherapy. He has treated hundreds of patients on this. It could have serious side affects and is the last option because the lung cancer patients that responded typically has 3 factors which I have none. One of them is they were long term heavy smokers before they were diagnosed. I forgot the other 2 already, but the bottomline is I don’t fit the profile. He is willing to try it as a last resort.

So, after taking in all that information and given it some serious thought. It’s a tough choice for anyone to make, the good old dilemma of quality vs possible quantity. I decided on quality. I will die anyway. At this point, it would be a miracle if I lived to see another Christmas regardless what choice I make. At least I have quality of life right now to enjoy the rest of my life however short that might be.

I will take the brain radiation treatment. It does have long term consequence, like lost of short term memory and cognitive impairments, but usually those symptoms don’t manifest themselves for 2 years… it would be a nice problem to have at the point if I live that long. Short term side affects should be minimum like I would be tired after treatments and I would loose my hair which I don’t really care. I would look good bald, like a very wise nun! 🙂

The brain tumors will come back, it will get me eventually, but something will get me eventually. I think I will have 3 months of good health, maybe 6 if I am very lucky. The lung, liver and other growing tumors will get me into trouble at some point without treatments.

I just finished a book called “The Body” by Bill Bryson, highly recommended by the way. I enjoyed it very much. It gave me so much appreciation of what a marvelous organism we are. Our body has been our most loyal silent servant in our lives! I finished it last night, it literally ended with, we eat well, exercise regularly, made the best choice we can and we die anyway. LOL!! OK, that might not have been the most inspiring ending I ever expected, but so true!

He had a chapter on cancer. He said cell mutations are they way of life’s evolution. Without cell mutations, there is no human evolution. We would still be crocodiles. Genes mutate so that life can evolve, that’s what genes do. Those that don’t evolve and adapt will die. Who is to say my body hasn’t evolve or adapted to cancer on some level to the best of its ability? None of my cancer journey has made any sense, every time I fell better, my cancer inevitably has gotten “better” also, like it is now. What if for some wild reason that my body has figured out a way to tab into cancer’s energy somehow? Cancer cells are also living cells, they are alive and they don’t know how to die. What if this body doesn’t know how to die because I have cells that don’t know how to die??!! We try so hard to extend human lives. Why isn’t anyone out there researching how to tab into cells that don’t die?! I know that’s crazy, those of you who really know me would say, yeah, you are crazy! OK, yes, I am. lol!!

In any case, I surrender to life. Life can have its way with me. If life wants me to live, it will find a way for me to live. If life is done with me, I won’t be a cancer cell to the world. I know how to die.

As a dear friend pointed out to me this afternoon, I have lived a wonderful life. I have a beautiful child (young man). I have an ex-husband that would do more for me than most husbands would. I am standing on a lot of good choices I made all my life. What more could I ask for? More time? I know I would always want that because I am human. Enough is enough. What I have is enough. All of what you have given me is enough. I am more than grateful for all of you that has been part of my life! Thank you!