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.

Tuesday, February 17, 2015

Immunity from Stupid

Vaxer's. Anti- Vaxer's. So much discussion lately about the merits of herd immunity- especially in light of the measles outbreak linked to Disneyland.

We were at Disney during the time frame in question. The news splashed across my mobile- and honestly I sighed and went back to trying to annihilate Phil's score in Toy Story Mania.

Common sense seems to be lost. I have quite a lot to say on vaccines. But it is just that- what I have to say. Each person really needs to find their own voice and what works for them.

Here's some background- after Lily finished treatment- I spent months researching family history, the history of cancer, p53, and Li-Fraumeni Syndrome. During the course of this research- I found myself on a tangential path into the world of vaccines. From Smallpox, to polio and the SV40 contamination link to cancer to Anthrax and Gulf war syndrome. It is fascinating to me how many scientific advances are driven by war and politics. Vaccines are no different.  Vaccines are intricately related to illness and viruses with an undercurrent of social policy. For years it was refuted that viruses could possibly be linked to cancer. Then gradually there is a shift, as data and needs collect- the view alters. One of my more recent research topics- the HPV vaccine- and the evidence of a shift in thinking as the HPV vaccine is to prevent viruses that cause cancer.

I believe in vaccines. I believe they work and I think they prevent a lot of devastation.  I believe they are safe and necessary for the average person. There have been missteps along the way. There were tainted vaccines. There were illnesses caused by vaccines. But there have also been many lives saved.  My kids are vaccinated. I am not a huge fan of the combo vaccines- I think much of our body's confusion(autoimmune/allergy/reactions) can be attributed to throwing too many things at it to build antibodies to at one time. I also believe heavily that the over processed foods we are eating- cause a lot of these problems as well so if you see an anti-vaxxer out there feeding their child a happy meal- please enlighten them there are more chemicals in that nugget than a vaccine. I'm not an immunologist- so my logic could be horrendously flawed- that is just how I feel. I think our bodies are much smarter than we are and we have to find the balance between thinking we know what's best through pharmaceuticals and giving it a defensive leg up.

I've always been on the fence about the flu vaccine. Every year that I've gotten it- I've gotten really sick. So I am of the opinion- I'll take my chances and hope for the best. Mind you- I am immunocompromised, I have 2 "immunosuppressed" kids. I do not weigh the decision to turn down vaccines lightly. Both Phillip and Lily get the flu vaccine every year. Pretty much their endocrinologist has the nurse come in and give it to them.  Generally Bella and Kiera do not.  SO we are half and half in this house. But in my mind- flu vaccines are not the same as other vaccines.

You have to find the balance between letting your body do it's job and the risk management of severe illness. Herd immunity keeps popping up in article after article- blogs-stories.. Social responsibility to get vaccinated to protect the weaker members of society. As much as I believe in this social construct- it is a flawed reasoning pattern to promote vaccination. Herd immunity is a good thing- but the problem is- it is being preached to a self centered audience. The same audience who feels everyone deserves a trophy-yet they can bend the rules to fit their individualized "needs"- that no child should be left out- that bullies should be publicly shunned. To promote vaccination as some philanthropic social responsibility to protect the weaker minority- yet neglect that much riskier every day behaviors put these immunocompromised populations at risk- is short sighted. And being preached on self centered ears.

There is an overwhelming lack of big picture. There is an absence of thoughtful consideration of the forest through the proverbial vaccine trees. Big picture- if an immunosuppressed individual goes to a place such as Disneyland- they are opening themselves to an international myriad of health issues- only a few of which are illnesses that can be vaccinated against. Do we screen international visitors and check shot records- No.  I believe everyone should live their fullest lives- and find joy and LIVE however they see fit. But where on earth did the over-riding belief that the general public is out there to protect you come from? When did we become immune to personal responsibility to protect ourselves or our children by doing what is best for them? And sometimes that means making unpopular decisions and facing the consequences of that.  As someone who has done Disney twice as an "immunosuppressed"(I use this lightly since my counts have been very steady ) and as a mom of a cancer patient on her Make A Wish trip- there are so many places where you are opening yourself up to problems. For one you eat out more- and although there are food safety standards- immunosuppression #1 sucky rule- no eating out. Why is that the case if there are food safety standards- because the standards are for the average masses who can fight off a bit of bacteria. And people are human. And sometimes not too bright and most definitely lacking common sense and hygiene. It is purely about risk reduction.

This absolute disdain and condemnation over the carelessness of antivaxers who exposed children too little to be vaccinated at an amusement park is ironic. At best.  I think if you have the means and desire to take a baby to Disney- Party on Wayne. Party on Garth.  Phillip was 9 months at his first Disney trip- a 50th birthday celebration with his grandma. Of course- phew- he was vaccinated at that time.  BUT you have to put it to the common sense test- it is a big place with lots of people and I don't care how many cast member trash ninjas they have popping up out of secret entrances- that leaves room for a lot of dirt and germs from so many locations. This past visit a kid coughed on my head. So other than taking airborne daily and hand washing like an OCD olympic event- I knew going in- getting sick was a distinct possibility. Heck Bella developed a cough on the plane there. Phillip's nose started running. Perhaps instead of earplugs and candy "I'm bringing my baby who is gonna cry" on an airplane gift bags- we should consider antibacterial, airborne and lysol . Because if you are taking a baby to such a place clinging to an expectation that humans there are all of a certain mindset or social aptitude for biological hygiene- you could be very disappointed. People get sick. The biggest threats are the people who do not know enough or care enough to be concerned outside of their infectious little bubble. How it it we expect a certain accountability of sacrifice from them yet are willing to not apply it to ourselves?

Life is about risk management. The government issues safety guidelines and vaccine requirements. Not everyone fits into the nice neat little box of standards. People who have gotten vaccines have gotten the diseases they were vaccinated against. It happens. Recently a mom blogged complete contempt for whomever exposed her newborn to measles in the doctor's waiting room. First of all- most good clinics try to deconflict well baby exams with sick kid appointments. Unfortunately there are a myriad of germs that can survive outside the petri dish of humanity for quite some time. EVERY time my kids go to their routine endocrinology appointment- they end up sick. We go every 3 months and I did a dance recently when Lily got bumped up to 6. We go into the waiting room- they sit with their homework in their lap, we sanitize as we go.  But I hate to be the bearer of bad news- the sick people are the ones who absolutely NEED to be there. AS much as I promote prevention and wellness exams- a doctor's office is where people who are sick wait. A woman was diagnosed with mumps as I sat getting chemo in the chemo bay one day. Mumps. She had been vaccinated. But her immune system took a hit from chemo. And she got mumps.  I didn't feel angry at her. I felt really bad for her- she looked miserable. Sure I worried I might get sick, but I'm pretty sure she didn't want to be sick either.

There is a lot of misinformation and stupidity everywhere. You cannot fix stupid.  If only there were a vaccine for stupid. You can hope to educate and raise awareness. I do this daily for LFS. DO I think everyone should avoid radiation,oh well that IS a can of worms...let me rephrase. Mutants are especially sensitive to radiation. Sometimes it is the best option- but for screening- it should be avoided if possible. Many mutants have a tough time getting the screening they need or getting it paid for by insurance because the standards of care for treatment do not include it. As a group- we have different needs. Do we think every single person should have to follow our rules since it would be more convenient for us( the world would be a better place- but I digress).  Societal norms are in place to help the majority. When you get diagnosed with a rare illness you immediately ask why? Why is there not a cure? Why is more not being done? Well because the shark closest to the boat gets the attention and for the public in general- communicable diseases are some of the biggest and nearest sharks. You are the captain of your boat. You can steer it into the sharks- away from the sharks or keep it on land if you are that afraid of sharks. You gotta do you. You gotta be you.  Just remember sometimes you don't see those sharks at all- doesn't mean they aren't there waiting. And feel free to yell at the sharks and berate them for their lack of vaccination- I'm pretty sure they will weigh that heavily in their decision to eat you.

Tuesday, February 3, 2015

Gamma Knife Experience

I figured I should probably talk about the experience before I forget- although really I could just blame it on my brain tumors or the fact that I just had radiation on my brain.

It really was completely and totally as advertised. I spent too much time looking at cancer forums and trying to reassure myself that it was going to be OK. But that is part of the process- that is why forums and support groups really do provide an invaluable service during these experiences. Sometimes you just have to hear from someone else that they survived. And sometimes the forums can be a scary place because it is a cross section of the optimists and the pessimists and the optimistically realistics.

I think any time you mess with the brain- things could happen. It is such an integral part of who we are. You wait and wonder- hoping that you are wondering for nothing. You wonder what you should be doing in the case that everything changes and you superstitiously try not to do anything in hopes that it won't.

I was pretty terrified. The jittery nervous making hugely inappropriate jokes kind of terrified. Better living through pharmaceuticals kind of terrified. Knot in stomach, jumpy.

Waiting with the Tools.
We travelled to town. The gamma knife facility is the only one on the island. We walk in and are introduced to my nurse for the day, Trisha - which I take as a good sign since one of my best mutant buddies is Trishia. I like Trisha a lot- especially after she gives me 5 mg of ativan- to take the edge off.  It helps the screws and head gear that are sitting around me feel less ominous. 
The Gamma Knife Head Frame

Screws and syringes of numbness.
We sit for a few minutes, letting the ativan work and the docs come in and say hello. They had already been reviewing my MRI and discussing the plan.  In the few weeks between MRIs, a new, 3rd tumor popped up. It is small, but in my frontal lobe. I can tell this development freaks Phil out. This is a fast moving ballgame we are in. It's hitting him. Wish I could share the ativan- he looks concerned, I just smile so he knows it's gonna be ok. Better it shows up now and we zap it. 

They explain the process to me again. Dr. I is very generous with the novocaine he injects into where the pins will hold the frame on. 2 on my forehead and 2 in the back of the head. I can hear the weird crunching as the needle punctures the tissue, a little stinging and then numbness.  He starts screwing the screws in and I feel the pressure of it- but no pain. They warned me about the pressure and assured me it would pass in a few minutes and it did. 

 They spent a few minutes making sure the placement is correct and aligned.  This is pretty important so that there is a point of reference externally and internally.
 Once I'm officially screwed in- we go down to CT.  They do a brief head CT which is then overlaid on the detailed MRI I had earlier in the week. This helps them visualize all of the structures, tumors and frame placement in order to program the specific coordinates into the gamma knife machine.

We were told the planning can sometimes take hours, but it really felt like mere minutes. It's one of those strange moments that you wonder which is worse- the waiting or the wondering if they should take a little bit more time to plan. They assured us they had done the majority of the planning before we got there- once they had the CT data- it was pretty easy.

We headed down to the basement- to a big open room with a skylight. It's amazing how such a thing like that eases your mind. Well that might have been the ativan.  I did really feel a bit like Dead Man Walking.  But I took lots of deep breaths as they fastened my frame to the machine and tried to get comfortable. I had to be there for 65 minutes.  

 Through this door is where the magic happens.
 I was really glad that the back screws were numbed up good for this part- since my head is resting on  them. I felt a little pressure but the table tilted a bit to support my back, so it wasn't uncomfortable.
 I hoped that I would sleep. But I was awake the whole time. It was noiseless except when the machine changed coordinates. I got to listen to music- I just asked for something relaxing- the last thing I wanted was easy listening and to hear a song that would turn me into an emotional wreck. They chose classical. I probably would go more new age/spa in the future- classical scores tend to blend together and I couldn't gauge how long I'd been in there. Every now and again my back would try to spasm and I'd just breathe through it trying to be super still as I visualized the tumors going up in poofs and the healthy brain being protected.

My friend Cheryl said I needed to make sure I brought my spider along with me. Another friend said he envisioned it like Cerebra from X-men- actually pretty close. Phil said he preferred to think of it like laser cats- shooting the tumors.  I didn't feel anything but numb, yet I know that like a sunburn- radiation effects can take some time to brew. The idea is that with how specific the gamma knife is- the tumor would mostly feel the effects- not the healthy tissue.

When I was done, they unscrewed the frame. That was a surreal feeling.  One of the radiation oncologists gave me a written prescription for steroids. Sometimes the brain swells in response to the tumor dying. Phil looked at the piece of paper and looked at me- what do I do with this? I laughed. You take it to the pharmacy and they give you meds buddy- if you want to have the full experience we can take it to walgreens on the way home.  I still have some "in case" steroids- so we can wait til our next trip to the hospital to fill the prescription.

The holes healed really nicely. I had to keep the bandages on for the night, but I was surprised at how small they were. Bella and Lily were both nice enough to point out that I had zits that were much bigger than the holes. Thanks girls. I felt ok after. The screw hole areas were a little swollen and uncomfortable for a couple days, but nothing major. I had a few minor passing headaches and I notice if I get tired or stressed things feel worse- so I try to avoid that. 

The spots on the back of my head are still sensitive.  I don't lay on them because it feels kind of like a sunburn. But all in all I feel Ok.  I started the Arimidex last week and so far haven't really had too many side effects. Some joint stiffness and GI stuff. I had my new chemo, Kadcyla yesterday and it was entirely uneventful- which we like. It was an hour and a half infusion, but in the future it should only be about 30 minutes plus however long it takes the lab to come back with bloodwork.  I will have to watch my blood counts and for bruising. The nurses say they see low platelets a lot with this chemo. But they also said they have quite a few ladies who have been on Kadcyla for years and doing well. I would very much like to be one of those ladies. 

Lily Kay Monkey

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