ALWAYS Knock on Wood

I mentioned in my last post that my MRI was last Friday. And it was.

The results showed little to no change in the inflammation they believe is there – i.e. its not acting like a tumor, so we assume it’s not a tumor. That makes sense to us, so we’re going with it. I am perfectly healthy otherwise – showing no symptoms outside the ordinary, so there’s no reason to believe it’s anything but inflammation. That would occur because of the vaccine or my body’s natural defenses – having an auto-immune disease may have it’s perks after all.

THEN I went and had a seizure on Tuesday. Out of the blue. I made dinner, sat down to eat with my family, we had a lovely conversation and WHAM! An ambulance was called (2 showed up) and off I went to the hospital. This time though, I was coming around by the time they were moving me to the gurney. By the time we got to the hospital, I was chatting with the EMTs like we were old friends. I donated some blood and pee, had a CAT scan, doctors were consulted, my anti-seizure drugs were increased and was on my way back home.

Two things came out of this experience. 1. Ativan did what it was supposed to do and prevented status epilepticus. 2. I am back to no driving – for an indefinite period of time.

(Let me clarify for my readers – when I previously mentioned that I’d passed the muster for the DMV, it was just an annual check in. I HAD been driving and they touch base each year to make sure I am still capable of driving safely.)

So, just when I think it’s all going so well, my brain reminds me that I’m still on the brain cancer roller coaster. ‘Don’t get too comfortable now, ya hear?’ Stupid cancer. Also, while I was bragging about how awesome I’m doing, I did NOT knock on wood. I’m pretty sure that’s where I got screwed. Remember, always knock on wood when you talk about how awesome your life is going.

Now I’m trying to figure out how to drop off/pick up two kids at two different schools on bikes or feet. The Valley Transit Authority will be getting revenue from me after all. And my friends and family may be called on to bring me on their errands (sorry!)

To quote someone very wise: ‘Crap on a cracker.’

Waiting With Bated Breath

Most of us with stage IV brain cancer (or any type of cancer, really) talk and think about how far ahead we plan our lives. At first it’s ‘recovering from surgery’, then ‘getting through radiation’, and other short-term, cancer related ‘milestones’.

Then it’s 4 week MRIs…8 week MRIs…12 week MRIs… And with any luck it doesn’t go backward from there. We feel nervous about planning anything beyond those timeframes. We live MRI to MRI.

At some point, when things are going well, we might venture out beyond the 12 weeks and plan a trip/vacation or buy concert tickets for a show 6 months away.

BIG family milestones might be too much – entering high school, first dates, driver’s license, graduations, weddings, babies. Those may be too far out and we can only tentatively hope beyond hope that we are here to witness it all. (My kids are 8 and 11, so we’re a ways off from most of those)

So, you start to find other, safer perhaps, big events that push you forward in your fight. Maybe it’s the World Series, the Superbowl or the World Cup if you’re a big sports fan. Maybe it’s the harvest if you’re a gardening fanatic and have been waiting 3 years for that Avocado tree to produce something…even just one avocado. Maybe if you are glued to political drama, it’s to view actual bipartisan decision-making in Congress or witness politicians representing the people instead of the money. Ok, that last one isn’t very realistic, but you get the idea.

For me (family milestones aside), I aim my survival goals at when the next Diana Gabaldon novel is coming out. I aim for making it through the final part of season one of Outlander on Starz (April can’t come soon enough.) I aim to see if I finally make a decision on joining a yoga studio. Can I get to 10,000 steps a day? Are there enough recipes to use all of my son’s harvest of sweet potatoes? Will the dog EVER learn to get his leash on his own when we’re going for a walk instead of staring at me while I suggest the idea? Will I ever get up the courage to make artisanal vegan cheese? Will we ever learn who was responsible for making that idiotic last call for the Seahawks causing them to lose the championship?

These may not be the most important survival goals in the grander scheme of things, but they all take me past the next MRI. They get me back to living for tomorrow and beyond regardless of what my brain tumor cells decide to do.

My next MRI is Friday, by the way.

My Other Other Disease

Unlike the campaign for Pork (‘the other white meat’), I would never suggest you acquire another chronic condition if you already have cancer. Or actually eat pork since I’m vegan. Maybe that was a bad analogy…

Anyhow, I went into cancer with another disease already in place. My name is Karyn and I have Psoriasis, another fickle ogre of a disease. Mine is minor compared to some. It has various forms, varying degrees of severity creating various levels of disability, and it’s ever changing – occasionally carrying with it new ailments to attack the body or becoming resistant to treatment.

Like cancer, Psoriasis needs constant attention to keep it under control. It can become resistant to treatments. It can affect your mobility. It can land you in a hospital bed. It can create anxiety, pain, and depression. It can spread to new areas of your body. It can create associated health issues. Psoriasis can trigger Psoriatic Arthritis. It has a relationship with heart disease, diabetes, and depression. Medication used to control severe cases carry multiple risks which have to be weighed, just like cancer treatments.

Psoriasis has no cure. Cancer has no cure. There are multiple research projects to determine the cause(s) and develop new treatment options, just like cancer. There are theories about what triggers it – aside from genetics. Common triggers are viral infections, stress, injury, and some medications.

There are six different forms of Psoriasis. It can attack a small area of your skin or your entire epidermis. It can be annoying or extremely painful, leaving you desperate for relief. Each psoriasis patient can have multiple forms of the disease, though it’s usually limited to one. Psoriasis is not contagious, though people often think it is because of the appearance.

With Psoriasis, you have to hit it with big treatment, then taper it off for maintenance. At least until that strategy stops working. Then you start all over again. Because Psoriasis is so fickle, it requires a constant rotation of drugs, ointments, soaps, lotions, shampoos and experimental dietary changes. I can almost guarantee that every Psoriasis patient has a small in-home pharmacy made up of rotating treatment options.

Unlike most cancers, Psoriasis is a visible disease. It can freak people out and cause them to worry about what you might give them if they touch you. It makes getting a haircut an anxious experience. Massages are out of the question for most sufferers. It changes the way we dress. It creates social anxiety. It prevents us from getting jobs where we’re interacting face to face with the public. Even if it’s debilitating, insurance companies deny coverage of medications. We are denied disability even if we’re confined to a wheelchair or spend days in a hospital each month. We can feel isolated, alone, and depressed.

Ironically, chemotherapy can offer respite. Psoriasis is an auto-immune disorder. Chemotherapy attacks the immune system. Because of the impact chemotherapy has, some Psoriasis sufferers are now taking chemo to get that relief. Can you imagine someone without cancer CHOOSING to take chemo? Well, that may give you some idea of how badly they’re suffering.

As I said, my Psoriasis is mild – largely limited to my scalp. It’s always been more annoying than anything else. But so many people experience the worst of what I’ve described above and it’s more than annoying. Mine disappeared while I was on chemo, so I understand the appeal of that treatment route, side effects and all. The risks associated with other biologic treatments are not worth it for me and my doctor would never offer it as an option. If my Psoriasis was life altering, I’d probably change my mind about adding another pill to my treatment rotation.

Want to know more? Visit the National Psoriasis Foundation.

I finished this post and then realized I wrote one similar to it in May of 2013. Thanks Memory. Well, maybe my new readers will appreciate it since they won’t have to go digging through my archives.

On The Road Again…Or Still

Great news everyone! I know you all have been waiting with bated breath to find out about my driving privileges.

After my last seizure, my driver’s license was suspended as it should have been. So, every year they check in with my doctor to see how I’m doing. Not a ‘Has she made any new friends?’ kind of doing, but an ‘is she taking her meds regularly?’ kind of doing.

A bit of a pain, but it’s a necessary process to make sure I’m safe to be behind the wheel. The government agency responsible for making such decisions – specifically Henry – gets to ultimately make the decision and determine if I need to take any tests, written or driven, to prove myself worthy.

Henry decided that I’m good to go. I’ve not had a seizure since September of 2013, my driving record is nearly perfect, and my doctor gave me the clear.

My neighbors, friends and specifically my husband are thrilled. I’m pretty thrilled too since my kids are in two different schools and both have after school activities. The public transportation system is, however, shedding tears over the minor loss of income.

Hey! Maybe I could become a part-time, stay-at-home race car driver!

CLARIFICATION: I’ve been driving for a year since my suspension. This was an annual evaluation/verification by the DMV to ensure I’m still safe to be on the road. I’m sorry I didn’t make that clear.

Thoughts on potential employment

As a follow up to my Existential Conflict self-pity extravaganza, I was giving some thought to any and all job prospects.

Jobs that would be completely out of the question:
Driver – Truck, Taxi, School Bus, Delivery….you get the idea. While I’m completely capable of driving and have been approved by the respectable government organization which makes such decisions, I’m doubtful that any business would hire me to drive.

Strobe light tester – flashy lights and seizures have a long history of incompatibility

Surgeon – I’m not skilled for this role in any way, shape, or form

Mathematishian – I can’t even spell it right…clearly I’m not qualified for complex number problem solving. Also, I like words WAY more than numbers. Which is ironic since I spelled mathmatishian wrong…again.

Rave DJ – 1. Loud, repetitive techno music 2. Afore mentioned strobe lights 3. My aversion to rooms full of young adults under the influence of mind-altering drugs with various forms of glow sticks and pacifiers.

My non-negotiable requirements for any job I might consider:
Nap time – Liberal policies on crawling into a comfy corner or business-provided cot to have a little shut eye when my body tells me its time to take a little break with my eyes closed

Flexible schedule – Not a boiler plate policy allowing me to work at home (though that would also be required as well), but a level of flexibility that would allow me to pick up my kids after school, take days off when the kids are off of school (including summers), attend my regular doctor appointments, and unlimited random days where the Nap Time clause is insufficient for my needs. My hours will need to be strictly limited to 9am to 12pm only.

Fragrance free workspace – Perfume and ‘fragrances for men’ are offensive to the nose, as are artificial smells like cinnamon candles, air fresheners, or unreasonably scented hair and beauty products. All fragrances must be pleasing and approved by ME.

Vegan, protein rich snacks – Blood sugar balancing nutrition, vegan and delicious, must be readily available to prevent states of hangriness. No one wants to see me when I’m hangry, it’s not pretty.

Dog friendly workplace – My dog has separation anxiety and needs to be with his people or he cries. No one wants to be responsible for making my dog cry.

After giving it more thought, maybe I don’t really want a traditional job. I realize that not HAVING to work is a luxury and I am very grateful for that. Being a stay-at-home parent is something that not everyone can (or wants to) do. It can be hard, but rewarding work. I have the opportunity to volunteer in the school library, accompany my son’s class on field trips, and go grocery shopping in relative solitude.

While occasional feelings of guilt and insecurity for not being a rare Super Survivor may pass through my mind, I realize that my life is pretty awesome (aside from the cancer part). Self pity posts are hereby over. We shall now return to our regular programming.

Existential Conflict

I have terminal cancer and a potentially life threatening seizure disorder. My cancer is currently being held at bay and I haven’t had a seizure in over a year. This is good, very good, but…

It’s critical that I don’t do anything that will risk reducing my seizure threshold. I stay hydrated. I get as much sleep as I can. I manage my stress (or reduce it). I avoid situations where I will get too stimulated – or at least recognize the symptoms and politely excuse myself to a quiet place. I manage any pain I have as best I can. I SHOULD get more exercise, and resolve to do so this year.

I am a stay at home mom. I do all of the mom things I’m supposed to and like all moms, I wonder if I’m doing enough. I love being with our kids every day – even when they are driving me up the wall. A seven-year old with an endless supply of energy and an eleven-year old with…well, she’s eleven…can provide any number of challenges. In my role as a SAHM, I also largely manage the household. I’m a wife to an amazing man, who supports his family in so very many ways. He’s my rock and he helps me manage everything I’ve mentioned above.

I don’t love the cancer/seizure part of my life, but I’m not truly dying…yet. I do love being a mom and a wife. I’m pretty damn lucky and have no major complaints.

Yet, I frequently have this feeling like I’m not doing enough. Maybe it’s because in my past life (pre-diagnosis) I was incredibly busy. Maybe it’s SAHM guilt for all of those other moms who are managing it all with grace, love and super powers. I used to have a career and eventually I hated what I was doing and dreamt of being able to stay home with our kids. I can’t say I’m a fan of how that dream came true, but here I am, a SAHM. But is that really enough for me.

Right now, I’m a professional cancer patient (to quote John Green) along with being a SAHM. I read all of these stories about Super Survivors who go off to change the world in some brave and courageous way or another. They got that ‘my life has meaning and I have to seize the opportunity’ bug and they go off to do amazing things that make people wonder ‘how did he/she do that?’ or ‘he/she is so inspiring!’ We hear those stories, but those amazingly inspired people are in the extreme minority if we look at the big picture. Every other cancer fighter/survivor is just like any other person in this world – except for that cancer part. That doesn’t make them any less special, but how many of them feel like they need to leave their mark on the world or their life was wasted?

Maybe it’s just my own insecurities shining through and 99.9% of cancer patients/survivors know they’ve left their mark without needing to run off and save the world. To be honest, I know that too.

I still wonder if I’m doing enough. If I go find a job, would it be too stressful and exhausting? Would it cut into my time with the kids? Would the dog become depressed and resentful for being left alone for hours each day? Would anyone hire me knowing that I’ve got regular doctor appointments and could get sick at any point? Does that matter? But honestly, I don’t really want a job – just the thought of it makes me anxious.

So, as the new year begins, the kids go back to school and we fall back into a regular routine, I will find things to fill this gap. I will find a way to feel more productive with my days. I will get off my butt and do something about it. I will relish every day that I have with my kids, even when they’re literally bouncing off the walls or being tweenagers. I will escape on occasion to spend time with my husband so we can have quiet time to talk and be alone without the wall bouncing surrounding us. I will be a professional cancer patient without feeling the need to save the world. Not everyone can be ‘Super Survivors’ and that’s okay.

Signed,

Striving to be satisfied with ‘Normal’

Confession

When you find out you have a GBM, it’s a terrifying and lonely experience. Some may seek other patients through support groups. Some find others through various online sources – Twitter, Facebook, etc. It’s important to find people who have an understanding of what you’re experiencing, to know you’re not alone. Caregivers need those contacts too, sometimes even more critically than the patient. Perhaps you get to the point where YOU can provide that support to others who find themselves with the same or similar diagnosis. It can be very inspirational and motivating. But it can also be very emotional.

Seeing your friends and/or loved ones decline or die – as many with GBMs do eventually – can become too much. Being reminded of what may be in store for you can become more than you can handle. Losing so many people to a disease you also have can send you into a serious downward emotional spiral. It eats away at hope and distracts you from the joys of everyday life. It’s your fate, be it tomorrow or 2 years or 10 years. Watching or hearing that someone is at the end of their journey can pack a wallop to your positive thinking.

And then there’s the guilt. You know that there are others out there that need your support and encouragement. You know that they may be suffering – emotionally and/or physically. You know they’re probably scared. You know they’re worried about their families. And yet, you’re afraid to get too close, become friends only to watch them suffer and potentially lose their battle. At least I am. Sometimes it’s easier to just stay in my little bubble of fear, self pity, and self imposed ‘ignorance’. I’m not strong enough to bear the burden, to watch them succumb to this disease. I’m selfish and uncaring, I’ve abandoned others, I’m emotionally weak. At least those are the thoughts that flow through my mind. It’s hard to admit this publicly, but I’m pretty sure I’m not the only one.

It’s okay for us to admit our weaknesses and fears throughout this process. It’s a whirlwind of emotions and there are good days and bad days. Other patients may have the strength to experience loss after loss and that ability is like a super power. I wish I had that strength, but knowing I could be the one suffering as I die at any point is too much for me to handle. If someone asks for my support or advice, I’ll be right there to offer it. But then I’ll likely retreat back into my hobbit hole of ‘ignorance’ until the next request. Honesty and guilt while compartmentalizing my experience between an open ended death sentence and managing my everyday life – just another part of having an aggressive malignant brain tumor.

Open Ended Death Sentence

A few people have asked me about my reaction to Brittany Maynard’s death. How do you feel about it? Does it upset you? Do you think it was ‘right’? Would you do the same thing? Do you think she gave up and should have gone through surgery and treatment? And so on. Brittany isn’t the first one to die of this disease, there are many others who fight the battle and lose. We lose people to GBMs every day. We also see survivors who inspire hope and promise.

Very few of us know what was really happening with Brittany. We can all make assumptions and quickly move into criticism, judgement or support for her choice to die with dignity. Some will quickly call her decision, her ‘suicide’, immoral and she shall be damned for eternity. Maybe some people don’t believe Brittany should have ended her life, some say she should have fought harder, and others called her brave for making that hard decision and bringing the ‘die with dignity’ discussion to the forefront.

No one but Brittany, her family and her doctors know her circumstances, the details behind her tumor, and her final decision. She was diagnosed in January and ultimately chose not to seek aggressive treatment. She chose to die her way. She chose to use her situation to bring attention to ‘Die with Dignity’ laws in the country.

The one thing that I AM bothered by is the fact that her story brought a lot of attention to the ‘Right to Die’ laws, but very little discussion about brain cancer. It was a lost opportunity to open a dialogue about the need for awareness and funding to find treatments and even a cure, making sure that no one suffers through this disease of has to choose how they die. But I’m stating that disappointment from the perspective of someone fighting the same deadly tumor, which gives me a little bit of a bias.

NBC was one of the only news outlets that seemed to focus on the issue of brain cancer.  The article is here.

In contrast, Lauren Hill – another terminal brain cancer patient – has chosen to spend her final days raising funds and awareness for Diffuse Intrinsic Pontine Glioma (DIPG). This pediatric brain cancer is as deadly as Glioblastoma Multiforme. Her community has rallied around her with support and love.

Both Brittany and Lauren had/have terminal illnesses. They both chose how to raise awareness for what was most important to them. Neither decision was right or wrong, it was their decision and we should respect that even if it’s not what we would choose to do ourselves.

Living with a terminal illness with an open-ended completion date can be a little stressful at times. Ok, very stressful. Knowing you’re going to die from a terminal illness, just not when, can lead you to become paralyzed with fear OR it can lead you to enjoy the beauty that each day offers. More realistically, however, it’s a combination of both – sometimes in the same day. It will cause you to plan for the inevitable, privately or publicly.

Many of us might not make the same decisions as Brittany OR Lauren. Does that make one of us ‘stronger’, ‘braver’ or ‘weaker’ than the other? No. It just means that we’re all individuals fighting a disease that we know will eventually take our lives…sooner or later…and how we each deal with that is going to be a very individual experience from diagnosis to treatment to death. Brittany and Lauren made their choices and so will we.

 

 

The Irony

There are lots of things in this crazy world that are ironic. Just ask Alanis Marmoset (I know it’s Morissette, Marmoset is just more fun to say.) Rain on your wedding day and all that.

The irony in some of the treatments for a myriad of conditions are ridiculous. I guess that’s likely true for most medical treatments of one kind or another. Just listen to the legal warnings at the end of each commercial for the latest drug. Antidepressants that may cause thoughts of suicide. Erectile dysfunction drugs that may cause erections that won’t go away (yes, I said erection.) Blood pressure medicine that may increase your blood pressure or cause a heart attack. Any number of biologics carry multiple risks, but risks that so many are willing to take to manage an illness or relieve their pain.

With cancer, most of us willingly accept and take those risks and more – chemotherapy, radiation, experimental drugs.

Chemotherapy kills cells, attacking the cancer, but also attacks healthy cells. It makes you feel like hell. Perhaps because of this effect, it carries the risk of serious infection and potential development of unrelated cancers. Irony.

Radiation treatment specifically for brain tumors – targeted or more broadly focused – carries the risk of brain swelling, brain damage, OR brain tumors. Irony.

Anti-seizure medication or combinations of medicines carry the risk of triggering seizures. Irony

Some drugs – like antibiotics, meant to rid your body of potentially deadly bacteria, can reduce seizure thresholds and trigger a seizure. With a history of status epilepticus, it might kill you. Irony.

Experimental drugs carry a series of risks and depending on the phase of the trial, some of those risks are unknown – hence, why they’re in trial. These drugs can trigger new illnesses, potential fatal reaction or extend the impact of the disease you’re trying to fight. Irony.

Most of us are willing to take the risk, but the irony is not lost on us. While we battle a disease that is trying to kill us, we risk possible death and do so willingly. Ironic indeed.

The trick is knowing what to ask your doctors about the risks when you’re prescribed medicines or begin a new treatment, take the time to consult with your pharmacist any time you start a new medication, and read those long lists of potential side effects for the medications you’re taking to understand any risks and contraindications. Essentially, be informed and don’t assume that what you’re prescribed is safe – especially if you have multiple doctors – as we all seem to in the world of cancer. Carry around a list of your medications – with doses – so you can make sure you don’t forget any of them when you are discussing new treatments. Don’t become a cautionary tale and get added to the next Alanis Marmoset song about the many ironies in life.

 

As an aside – there are thousands of plants in the Amazon jungles alone that can be used to treat a wide range of illness and disease – including cancers – but in the name of ‘progress’, those forests and all they offer the world are being destroyed at incredible rates. Not only are we destroying the homes of the indigenous people, we’re destroying potential sources of a cure. Irony or ignorance?

 

 

I’m Fighting a Battle – No Really I Am

I’ve heard a lot lately about concerns in using words like ‘fight’, ‘battle’, ‘win’, ‘lose’ because they are battle references and some take offense to them being used to describe their experience living with and [unknown term] cancer. They feel that ‘survivor’ is a better term. I’m not sure how that works actually while you’re going through treatment and doing all you can to rid yourself of this disease.

This is a quote from Kate Granger in a recent Guardian article that sums up the argument fairly well:

As a cancer patient who will die in the relatively near future, I believe rather that instead of reaching for the traditional battle language, [life] is about living as well as possible, coping, acceptance, gentle positivity, setting short-term, achievable goals, and drawing on support from those closest to you.

Kate Granger

It implies that if I use the words ‘fight’ or ‘battle’ that I’m not living as well as possible, coping, accepting, being positive, or drawing on the support from those closest to me. I call bull shit. My short-term, achievable goals are to get through my next MRI with flying colors and teach my kids to be kind to each other and everyone around them.

I can do all of those things to help me become a ‘survivor’, but let’s be honest – I’m battling cancer. I’m fighting against the malignant cells that mysteriously popped up in my brain. They are attacking my body and I don’t accept them as a symbiotic partner in my life. I want them gone, never to return again. I do not welcome them – I consider them trespassers and they should be prosecuted to the full extent of all treatment options available. I will fight them to my last breath. It IS a battle. Perhaps it’s a battle of wits, a staring contest, or a thumb war, but it’s definitely a battle. Saying that ‘battle language’ is negative and does us a disservice as cancer patients is ridiculous (IMHO.) I don’t deserve to have cancer, nor does any one else who has it. We have a right to be angry. It doesn’t mean we’re not hopeful, positive, living life as well as we can, or drawing on the love, prayers, and support of our friends and family.

I’m angry. I’m hopeful. I’m positive. It doesn’t mean I’m not fighting a battle. It doesn’t mean I can’t beat this cancer. A little anger is healthy (letting it fester and prevent you from being positive is not so healthy.) I may not beat this, but I’m sure going to fight like hell as it tries to take me down. Yet, I’m living every day with love, joy and gratefulness for the moments I’ve got left with my family and friends.

I’m not sure there are better terms to use under the circumstances. ‘Survivor’ is what we all strive to be and yes, if it hasn’t killed us yet, we ARE survivors. But until someone comes up with a better option, I will battle on. I will gather my forces and protect the castle (‘I fart in your general direction’.) I will raise my symbolic weapons in the form of chemotherapy, radiation and clinical trials. I will not raise the white flag, I will continue to strive for a ‘conscious uncoupling’ from my cancer in any way possible.

The battle rages on.