Tuesday, February 24, 2015

Living with Cancer

Cancer isn't always a fight. It's a quiet, sneaky ninja. It's a chase. It's a nagging feeling. It's a slow steady marathon.

For the past year and a half, I've felt OK. On good days I try to pack in as much as I can tolerate and on bad days I try to fit in what I can. Some days it's a few emails and just hanging out in the online support group. Other days its a challenge to get out of bed and the normal is overwhelming. Most days are good. Or at least that's how I choose to view it. There were some times in the past year that the icky days were starting to outweigh the good and we re-evaluated. Mostly I think it could be worse.

I am on a new chemo. Before, I took 3 different meds- all working in slightly different ways to keep the cancer from growing. The abraxane was tough- it's job is to stop cells that are replicating fast. Cancer cells replicate fast- but so do hair cells, and gastrointestinal cells, mouth cells. So the hair falls out, the stomach is upset, digestion just isn't the same and sometime you get sores that don't heal well. The other 2 were monoclonal antibodies- meds that specifically target a certain marker on cancer cells. These markers are on some other cells in the body too- but there is far less collateral damage than with conventional chemo. I think of it like a door that has a regular lock and a dead bolt. The Herceptin is the key to one lock, the Perjeta fits the dead bolt. The herceptin works by binding to the receptors- making sure other proteins can't bind to the cell and tell it to grow. It's basically piggybacking on the cancer cell - hopefully wearing it out until it dies. Therefore you don't have to worry about toxic effects like hair loss.

The new chemo is like a big fluffy rabbit foot keychain on the Herceptin lock- there is a chemo molecule attached to the herceptin- so instead of just interfering with the cell's signals- it is bringing some actual cancer cell killing action to the party. TDM-1. Touchdown Molecule 1 as Phil calls it. As we sat over a year ago discussing options- this was on the table. Phil wanted to go there- if this is the best- let's use it.  And that was how our oncologist eased us into the approach of buying time.  Because most meds only work for a certain amount of time, and you want to work your way up the ladder.

Well my friends- that is one of my beefs with cancer care right now. (pulling out soapbox)The standard of care for cancer is a great big bomb to the system. Sometimes that bomb is nuclear(radiation) but we mutants try to avoid that as much as possible. Radiation actually pisses our cells of and turns them into rogue little monsters. Ironically- stressors like toxins, radiation, viruses, injury are what cause damage to the body in the first place- when cells get hurt- we have various proteins that triage cells. If this one is too sick- it's digested and taken away- if this one is just messed up- it is given a rest and allowed to start replicating when it's all better. One of my mutant proteins- p53 doesn't respond to the damage like it should- it doesn't recognize rogue cells.  Many chemos operate off different principles of cell division- and since not all cells divide at the same time- the hope is to kill off more bad than good through chemotherapy cycles.

Standards of care are part of the medical world. It is how we ensure the majority of people will get the best or most successful treatment for any given condition(factor in cost- that's a whole 5 blog posts on it's own). Those of us with rare conditions usually learn that this one size fits all approach- although practical for the masses does not work for many. It is why it is important for things like radiation sensitivity to be known for those with Li-Fraumeni Syndrome- because with many cancers- radiation therapy is a front line defense. Unfortunately radiation works by inducing damage to the cell- essentially marking it for destruction. Some healthy cells get hit on the way- but with focused treatment there is less collateral damage than a systemic therapy- like chemotherapy that introduces chemicals to all cells. This type of radiation damage usually works by involving p53. Since my p53 is mutated- it doesn't always work.  Some chemos don't work well with mutants either. As research progresses- we find more treatments that work and eliminate those that don't. We are though- hundred of reasons why it is imperative to know as much as you can about your genetics and tumors- because why do a treatment if it won't work?

As treatments get more focused- like using monoclonal antibodies such as Herceptin- there is less damage to the overall being. That's a huge plus. But unfortunately Herceptin only works on Her2 positive cancers. As more tests become available and affordable- there will be more data and hopefully better access. The double edged sword is that the human body is amazingly adaptable and has fail safes. Some of it is sheer dumb luck. I am here today because my body spent 36 years with pretty functional p53. Now my body is struggling.  I am a reason why individualized medicine could not only make a difference in quality of life- it could make a difference in survival. I often use the analogy- gotta fight the shark closest to the boat. Living with LFS and metastatic cancer means the sharks are circling.  But there was a time not so long ago that the only sharks near the boat were breast cancer and sarcoma. I spent a lot of time researching and trying to figure out what the best option was for me- with not always the best database of information. Because despite p53 being one of the most studied proteins of all time- there is a difference between a tumor that has mutant p53 and a human that has mutant p53. And there are all of the other proteins and genes that work together and sometimes around these mutations- that make us into the one of a kind piece of art that each person is.  AND THEN we have our environment and all of the things we expose our bodies to, smoke, food, chemicals- and that is a whole other host of factors to consider. Sometimes the scientists start with cells and looking at them and how they react to chemicals and they realize a dish full of cancer cells just died and the normal cells lived- eureka. Yet as the research progresses- they find once they make this chemical into a pill- the body could break it down or change it and the chemical cannot get where it needs to be in high enough concentrations to do any good. Sometimes there are side effects that make it unbearable. And all of this research takes time and people and funding. The internet is closing the gap between people and the more people talk and share stories and compare notes- we will find what works and what doesn't. Of course science and research are businesses- but I see some exciting advances happening- collaborative efforts that mean a faster journey to important discovery.

So back to my sharks,  Kadcyla is throwing in some chemo with a specific target. I was lucky that I had a good response to Abraxane, Pejeta and Herceptin.  But over time- the cancer found a way around these drugs and we had to switch. This will be the chasing game from here on out. I will never be cured. There will always be sharks. This is metastatic disease. I will not have a few cycles of chemo and then be done. I will do as many cycles as my body can tolerate until I need a break or it stops working.  The first week after the last treatment I had stomach aches and head aches. Nothing entirely debilitating, but the what ifs were. The unknowns. Is it the side effect of the chemo or are tumors growing? Is this getting worse or normal my body saying WTF? There are women who are diagnosed at stage 4(aka metastatic or "advanced" cancer) There are women who never get 18 months of hoping the cancer doesn't metastasize before it does. Even though we all face the mortality of it when we are diagnosed with cancer, each stage has it's own layers of hope. There is a certain amount of luck to any of it. All it takes is time and one determined rogue cancer cell that can be the difference between a stage 1 and stage 4. No one woman is any less or more deserving of survival- or man- or child- in the eyes of cancer -we are just a host. We can be gracious hosts or bastards and like anything that is a personal choice. Just as that one cancer cell can survive despite the odds, so can anyone.

In the past year I have come to terms with the fact that I will never be cancer free. I have come to terms with I don't know how long I have here on earth.  I cannot spend every day "fighting". Nor can I spend every day "vacationing". SO I choose to spend my days living. In the often messy, chaotic and unglamorous way that I have become accustomed to.  And I will try to reach a compromise with the cancer in my body- because there will not come a time that I can evict it all. Some need to own cancer, some need to tie it up in bows, some need to fight. Those are their sharks, they have to deal with them as they see fit. We are who we are because of experiences. I lost my brother as a teen. He did not get to graduate. Fall in love. Have children. Be an uncle. So at times when I think of all the things I might not get to do, I think about the things I HAVE been able to do. And by choosing to live is to honor his memory.  He did not survive, but his memory does. When I laugh or smile through a tough situation, I honor my dad. He may not have lived, but our memories do. I try show my children that it is ok to have faults and it is ok to have grace.  Through some of the simplest moments around our dinner table are the magical moments that memories are made of and it is then I know- I am a survivor because they are me.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)