Radiation Deep Dive

I have been waking about 11pm, then midnight, then 1am. 

Each time I reach consciousness again, I either decide to get up and do something (doom scroll? Read? Write thank you cards?) or to release back into to the darkness. Usually, I choose darkness at least once or twice; put on my headphones, and queue up a soothing frequency playlist or chill podcast. And it does the trick, for a while, and the soft sounds usually lull me back into the night.

I am probably waking up because of the burning in my lower back. The burning comes and goes with the waves of pain meds that I do or don’t take, and can only be described as cancer eating at my bones. The cancer is making a mid-night snack of my pelvis, and in turn, it turning my core fragile and unreliable. This week though, there is a new burning on the block!

I’ve had three radiation treatments so far, with three more scheduled next week. The radiation techs line targeted rays of poison lined up with neat little tattoos they’ve imprinted in my skin, so they can get the same placement day after day. The tattoos are basically ink freckles, but they are my first, and I’ve been brainstorming ways to highlight or connect them when this is all over. Perhaps some kind of constellation art work or line art? 

The whole idea around radiation is that high doses of x-rays targeted at just the painful bits of my body will kill the cancer cells, or at least slow their growth by damaging their DNA. When the damaged cancer cells die, the body will slowly remove them (clean up on aisle one!). And that is likely to be part of the burning that wakes me up in the night. Unfortunately for me in this moment (tonight, not sleeping) is that it will take weeks before before the DNA is damanged enough for the big die-off. So I must be patient. I’m really learning to cultivate patience these days! But patience will pay off because the cells give up the ghost for weeks or months after the radiation ends. 

Soooo. When will I know that my back and ribs have recovered enough for me to use them again? And by use I mean walk? 

I’m not sure.

I think my body will feel better soon (less burning), my lower back might feel stronger, and apparently, the radiation will also eventually harden the bone, especially where the cancer has been nipping at the marrow. (correct me if I’m wrong people!). Once the bone is hard and I can put my weight on it, I know my world will change. I’ll be able to emerge from this cocoon that Kirk and I have built (a very lovely and cozy cocoon by the way!) and I’ll be able to go to the bathroom by myself, be able to feed myself, be able to bath by myself…I’ll be able to return to a kind of freedom that disappeared before I even knew to lament it when this all started in December…

But there are also side effects. The radiation can kill off the healthy cells too, with the main side-effect being fatigue, and of course, each person’s fatigue is different. What kind do I have? I’m not even sure yet. After my first treatment I felt a little foggy and took a short nap when I got home, but for the past two days I’ve been returning from the hospital and enjoying short visits from friends, not even ignoring the pull of a nap, just embracing the external love in these short visits that friends have been treating me to. The visits continue to be an energy source for me, so perhaps they are just counteracting the radiation naps…

Do you want to hear about a few more side effects? They are most definitely not sexy. In no particular order:

• Hair loss (just in the areas they are blasting, i.e. my ribs and pelvis…that doesn’t sound so bad?) 
• Sun-burn feelings. I’ve already started noticing a bit of raw and sensitive skin, and I stoked up on a variety of creams and salves to help soothe the skin should it erupt. Nothing on the surface has started bubbling like a sunburn though.
• Diahhera. Honestly, diahhera would be a welcome change because I’ve been dealing with the opposite problem for months now because of the oxycodone and steroids that I’ve been taking. I mean, I don’t want a leaky bum, but maybe the two issues will counteract each other and I can just return to my usual constitution. (a girl can dream!) 
• Lets see, other side effects could be nausea, and bladder problems, that sort of thing, but because the radiation is all focused on at or below belly-button level, I should not suffer the the memory loss or headaches that others experience. That might all come later anyway. 
• To my uneducated-midnight-googling-understanding, the immediate effects of the radiation will be weaker bones that are prone to more fractures (send over the bubble wrap everyone!) but then in the next month the the bone will regrow, thus turning my Swiss cheese hip and lower back into more of a carbon steel network of integrity that can support my weight again, at least enough so that I can make it to the kitchen and make myself a piece of avocado toast. What will this mean for backpacking? Oofta. That I have no idea. There are so many other problems going on with my back and spine, that I am not even going to guess, but I do know that I’ll have to change my approach to long trails for a while and embrace the no-carry, luggage transport systems, or at least enlist the help of friends like the beautiful Julie Tadlock who offered to be my sherpa. (I just might take you up on that Julie!)

So I think that sums up my radiation situation. And of course, all of this can change, and probably will change. You see we still don’t exactly know what kind of cancer I have. I know! All this time and we don’t know?? When I was first diagnosed in Louisiana they took a biopsy from my back rib (one of the easiest places to access a tumor at the time), and also removed the giant nasty tumor that had eaten away at my C4. Both were sent for testing and essentially came back with the same results: the origin of the tumors were the lungs. So that just told us the basics, my cancer started in the lung, and those lung cancer cells were traveling my body and setting up shop in other places and growing. The big missing piece we don’t have yet is what particular genetic mutation is my cancer? (and get this, there could be more than one!). What turned these cancer cells on? When the doctors know what specific mutation I have (and recent estimates have put the total number of possible mutations for cancer at more than 10,000!) we can do so much more.

Cancer mutations

Ready for science class? All the cells in the body have the same genes, but each cell uses only the genes it needs. That is, it turns on (activates) the genes it needs at the right time and turns off other genes that it doesn’t need. Turning on some genes and turning off others is how a cell becomes specialized, such as becoming a muscle cell or a bone cell, for example. Some genes stay active all the time to make proteins needed for basic cell functions. Other genes are shut down when their job is finished and can be turned on again later if needed.

While we all have basically the same set of genes, we also have differences in our genes that make each of us unique. 

The ‘code’ or ‘blueprint’ for each gene is contained in chemicals called nucleotides. DNA is made up of 4 nucleotides (A, T, G, and C), which act like the letters of an alphabet. Each gene is made up of a long chain of nucleotides, the order of which tells the cell how to make a specific protein.

Some people have changes in the nucleotides of a gene, which are known as variants (or mutations). For example, one nucleotide ‘letter’ might be switched for another, or one or more letters might be missing, when compared to most other people’s genes. 

Gene variants can have different effects on the proteins they code for. For example:

• Some gene variants might not have any noticeable effect on the protein.
• Some variants might lead to very minor changes in the protein. For example, a variant might result in a protein that’s shaped a little differently and is therefore a bit less effective than the ‘normal’ version of the protein.
• Some variants might have larger effects. For example, a variant might result in a protein that doesn’t work at all. 
• Gene variants that lead to changes in proteins can affect all of the cells with that variant, which might even affect the whole body.

The overall effects of some gene variants might not necessarily be ‘good’ or ‘bad.’ For example, gene variants account for differences in people’s hair or eye color. On the other hand, some variants can lead to a disease (such as cancer) or increase the risk of a disease. These are referred to as pathogenic variants. (These are also what many people think of when they hear the term mutation.)

Ready to go further down the mutation rabbit hole with me?

Gene variants, including mutations, can be either inherited or acquired.

An inherited gene mutation, as the name implies, is inherited from a parent, so it’s present in the very first cell (once the egg cell is fertilized by a sperm cell) that eventually becomes a person. Since all the cells in the body came from this first cell, this mutation is in every cell in the body, and can also be passed on to the next generation. This type of mutation is also called a germline mutation (because the cells that develop into eggs and sperm are called germ cells) or a hereditary mutation. 

It typically takes more than one gene mutation for a cell to become a cancer cell. But when someone inherits an abnormal copy of a gene, their cells already start out with one mutation. This makes it easier (and quicker) for other mutations to happen, which can lead to a cell becoming a cancer cell. This is why cancers related to inherited mutations tend to occur earlier in life than cancers of the same type that are not inherited.

Inherited gene mutations are not the main cause of most cancers. 

An acquired gene mutation (probably what I have) is not inherited from a parent. Instead, it develops at some point during a person’s life. Acquired mutations occur in one cell, and then are passed on to any new cells that come from that cell. This mutation cannot be passed on to a person’s children, because it doesn’t affect their sperm or egg cells. This type of mutation is also called a sporadic mutation or a somatic mutation.

Acquired mutations can happen for different reasons. Sometimes they happen when a cell’s DNA is damaged, such as after being exposed to radiation or certain chemicals. But often these mutations occur randomly, without having an outside cause. For example, during the complex process when a cell divides to make 2 new cells, the cell must make another copy of all of its DNA, and sometimes mistakes (mutations) occur while this is happening. Every time a cell divides is another chance for gene mutations to occur. The number of mutations in our cells can build up over time, which is why we have a higher risk of cancer as we get older.

So, the way I understand it, something triggered a cell to mutate in my body. When? Maybe last summer when I started having injuries that didn’t heal? Maybe earlier…the lung tumor could have been be-bopping along slowing gathering mass for years, not really affecting much around it until a change of some kind turned it into overdrive.

But I do know that if there is a time to get cancer, it is now. Technologies and treatments have come a long way, even in the last decade!

Immuno-oncology research is changing the landscape of cancer treatment by harnessing the immune system to attack cancer cells. So, once we know what my mutation is, my doctors can develop an immunotherapy to train my immune system to find and destroy cancerous cells. There are several different immunotherapy types, but all immunotherapy works by training your immune system so it can do more to fight cancer. 

Soooo, because we don’t know what my mutation is yet, all the treatments I’ve been getting so far (chemo & radiation) are essentially band-aids they are slapping on my body to do something, anything, to slow the cancer growth down. The real work will start when we know what the mutation is, know what it responds to best (very likely chemo and radiation), with the added superpower of immunotherapy to really get in there and do the work to help my body rid itself of those snaggle-tooth cancer cells.

There’s More

Ok, there is more. It’s possible I have more than one mutation (very likely indeed) and the one outside my lung is a bit of a beast of a different kind. Last time I had imaging done there were something like 27 small tumors in and around my brain. Eeek. The good news is that my brain is still sharp, I’m not getting headaches (well a few small ones here and there) and the other slew of side-effects I could be feeling from brain tumors are holding off. 

What makes my brain unique is that most of the tumors are growing in the fluid OUTSIDE the brain. They are growing in the cerebrospinal fluid and leptomeninges, or the membranes that surround my brain and spinal cord. And I’m special! If I do indeed have this kind of cancer, only 4-7% of people with non-small cell lung cancer develop this type. Sooo. this type of cancer is in fluids, and fluids move, which can cause treatment issues for the normal pathways like chemo and radiation. Fortunately, my docotors are so sure I have this type, that we are am pursuing a clinical trial up in Seattle that will use a special kind of proton therapy to work on it. 

What is Proton Therapy?

Like standard X-ray radiation therapy, proton therapy can destroy tumors. Both treatments work by keeping cancer cells from dividing and growing. The advantage of proton radiation therapy is that my doctors can better match the treatment to my tumor’s size, shape and depth with the goal to do less damage to nearby healthy tissue.

Protons are charged particles, not rays. Physicians can direct protons to go into your body, give off the most radiation when they reach your tumor and stop right there. Less radiation hits the healthy tissue in front of your tumor. Almost none reaches the healthy tissue beyond your tumor. (There is little to no exit dose compared to standard radiation therapy.) Less damage to healthy tissue can mean fewer side effects, better quality of life and better long-term health.

So, good news? Goodish news? None of this is good news, but we are getting closer to answers, and answers will help us find solutions.

Keep on keeping on my friends!

Much love!