Port of Call

I know “minor surgery” sounds like an oxymoron, but that’s what Karyn had today. For those who are surprised by this, so were we.

Talk about quick turn-around: She got a call to schedule it yesterday, and today Karyn got a port. (hello sailor).

A port is something a lot of patients who are frequently stuck with needles get “installed.” Rather than looking for a good vein time and time again, the port is used to administer intravenous medication, contrast dyes and more.

A port is also something Karyn has long resisted. Despite being a notoriously “hard stick” with small, uncooperative veins, she hasn’t wanted the visual marker of “cancer patient” that a port can give, even if she’s the only one who sees it. Two things changed her mind:

1) Karyn’s challenging veins have now reached a level of difficulty on par with Axel Rose. At some point, you just can’t deal with ‘em.

2) She learned ports can now be hidden subcutaneously. Holy bionic woman, Batman! A small lump under the skin is all she’ll have, and the needle can go right through that skin and into the port the same as a needle going into a vial of insulin.

Surgery to implant the port was fast and smooth, and Karyn is home now resting. It’s simply one more procedure through which Karyn has displayed her unparalleled degree of badassary.

Chemo Experience 101

Just coming out of my latest chemo experience, I thought I’d share a little about what I went through on the last few days (3-7, by my last account). The last time I mentioned it, I was beyond day 7 and I felt super awesome! I’m a liar. It sucks.

I was nauseous the entire time (days 3-7 were worst). Smells were awful, I could barely enter the kitchen. My kids were fantastic, but ended up watching more TV than they do in a ‘normal’ month. I ate because I had to so I didn’t throw up. Vitamin water is REALLY hard to open without the assistance of 2 smaller children taking turns after my initial, unsuccessful attempt. I was exhausted and needed to nap, no debating.

Maybe this time was different from most because I traveled, I stayed up until midnight on day 3-4 (Taylor Swift concert with 3 kids – lots of bright, flashing lights, light rail experience both ways), I had to get up at o’dark thirty to get to an Avistan infusion on day 6, I was finishing my lady time (TMI, I know). But it all worked together to drive my chemo experience into the deep dark underground of hell.

I know there are people who can do this without skipping a beat. One of my daughter’s teachers is fighting breast cancer and stated, ‘I get my infusions on Tuesday, so I might be tired the rest of the week.’ WHAT?! I have 7 days of hell each month and I complain. I’m a wimp. I’m alive, but a wimp. I’m a stay-at-home mom who’s a wimp. She’s a working TEACHER and she’s got balls. I bow to her strength and perseverance in light of what she’s fighting with amazing courage and ballage. And she’ll likely lose her hair.

So, I’ll complain in my wimpiness and then I’ll move on.

Moving on now.

Progress Report: 7-29-15

I had an MRI last Wednesday to see how my brain was progressing after 3 Avastin infusions and 2 rounds of Chemo.

We honestly didn’t expect a whole lot. Given my challenges in the last few months, we expected some minor improvement if anything. Realism.

I went in for my MRI at the unreasonable hour of 7am. It was early enough to impose an MRI nap, which was nice. I had to convince the techs that this was NOT my first MRI, I knew what to do and how to prepare for the experience. I should make a t-shirt that says ‘This is NOT my first MRI’ so they know.

My appointment with my neuro-oncologist was at 11:00, giving me plenty of time to read and overhear a conversation someone was having with a friend about the importance of paying child support for the sake of your future relationships with your kids. I wasn’t eaves dropping, he talked quite loudly close to where I was reading.

When my appointment came around, the nurse practitioner came in and announced that she couldn’t wait to show us my MRI. This is weird because she doesn’t normally do this, but she was grinning ear to ear, so either it was good news or some alien had developed in my brain hole.

Turns out my results have been pretty spectacular. The neuro-oncologist was impressed, the NP was impressed, we were impressed (mostly because they were). Everyone was impressed. We even celebrated with our neighbors and family somehow when we got home.

The thing about getting good news like this is that it sends you into an upward spiral, putting you into a position where you wait for the next piece of bad news. Think roller coaster emotions. My husband and I discussed the phenomenon of depression that follows the good news shock. Seems ridiculous, but it exists. Its like waiting for ‘when the next shoe will drop’. We don’t mis-appreciate this good news, don’t get me wrong, I think the mixed emotions are just a part of the roller coaster effects of fighting a typically terminal brain tumor. After the last few months of ups and downs, I think the unexpected feelings are natural.

I’ll wait until my next MRI to feel truly impressed. Optimism.

New And Old Drugs

New drugs + old drugs = super awesome fun time!

New drugs = Avastin
This one requires a blood test prior to starting. And a pee test.
This one requires a visit to the infusion center. Most people there seem sicker than me.
This one requires waiting…and waiting…and waiting for my drug to arrive.
This one requires multiple needle sticks – unless I get a good nurse. I REFUSE to get a port until they give me no options.
This drug, so far, has had no ill effects.

I heard some horror stories with Avastin. People getting more sick (or is it sicker?) People having bad allergic reactions. People growing extra limbs. OK, not that last one.

I’ve only had 2 infusion treatments. I have one next week with an MRI the day after. We’ll see how it all goes. Platelets stay strong!

Old drugs = Temodar
This one I’ve done before – hence the ‘old drugs’
My memories are a little foggy, so it’s hard to remember what happened after radiation was done…cuz that made me feel like I’d been hit by a truck.
I know it makes me feel nauseous and tired – especially by day 3 to day 7 (yes, two days post treatment)
I did treatment on vacation last time and I did it on vacation this time. Hurrah!
Zofran is lovely. A little anti-nauseau medication is good. Very, very good.

I responded well to this old one before, so we’re hoping that it happens again.

So, there’s my update on new and old drugs. Unfortunately, they are likely the last options I’ve got available. So fingers crossed that they give me a few more good years.

Essentially, one doctor told me I was preparing for the end. My other doctor told me I had a good fight ahead of me. I’ll believe my second doctor, thank you very much. New drugs, old drugs…whatever he suggests, I’ll do it. It worked beyond expectations last time, maybe it’ll work again. Maybe there will be new trials and drugs that become available during my lifetime. You never know!

 

 

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.

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?

 

 

Routine Disruption

Everyone gets into routines – processes that you do often enough that you don’t think about it when you’re going through the motions. Imagine your morning routine – shower (shampoo, soap, rinse, dry), deodorant, brush hair, etc…  You probably go through that routine without much thought. Occasionally, you forget to check if your shoes match or to pack your underwear to wear after a morning post-work out shower.

If you have children, getting ready for school is probably another routine. Such a routine is only modified by a sleepy, grumpy child who is unsatisfied with their clothing or breakfast options.

One of my routines involves taking medication twice a day to ensure I don’t have seizures. My alarms – mine, my husband’s, and my daughter’s verbal reminders – go off at regular times in the morning and night so that I don’t forget to take these essential medicines. If I have a seizure, I can’t drive for at least 3 months, I end up in the hospital, and if my seizure is not brought under control I could get (further) brain injury or worst case, die.

99% of the time, this routine goes off as planned. IF there’s a lot going on at the designated times (usually non-routine activities), even with all of the alarms, I can forget. My alarm goes off and I get up to take my meds and I get distracted between the family room and the kitchen (where my drugs are stored). I’ll stop to do any variety of things on that short journey from one room to the next and then carry on with another variety of things – sometimes ironically trying to remember . Forgetting the one critical thing I got up to do. My short-term memory issues create some risk with my high level of distractibility. 99% of the time, there’s someone around to remind me. Every once in a while that’s not the case, and I have to ask someone with a better short-term memory to recall whether they saw me swallow my pills.

Occasionally I have to leave the house before the morning drug ingesting hour and alarms. This is where the routine of the drugs takes over. I carefully dispense my handful of drugs to take with me. Then I grab my bottle of water and swallow them…early. The downside of a regular routine. While I still manage to get my drugs morning and night, they’re sometimes a little off in timing. The important thing is that they’re working and I feel pretty great.

But it continues to be a learning process. While the alarm system works very well, sometimes a fail safe is a good idea. This is where pill containers come in handy. I never thought that at 45 years old I’d be looking for the perfect pill container to organize my daily drug regiment. I’m looking for a pill container with a full week of am and pm compartments. There are so many choices, I’ll probably get distracted and walk to another aisle to find some shampoo.

And so the battle to live life with brain cancer continues.

Pity Party With More Drugs!

I’ve got some old drugs and now I’ve got some new drugs.

I’ve got brain cancer and now I’ve got potentially life threatening epilepsy. But as my epileptologist says, maybe it will go away in a few years. He’s an expert and has lots of experience (hence, ‘expert’) with these things, so I’ve no reason to doubt his prophecy. I’m willing to wait it out to see if he’s right.

As an extra buffer to stave off another status epilepticus episode, I’m now stepping into another anti-seizure medicine in addition to the maximum dosage of Keppra. I also have Ativan within reach at all times. Oh, and because he’s worried about the unborn child I’m NEVER going to create or have, he’s put me on Folic Acid…just in case – in spite of my assurances that it’s NEVER going to happen.

This new development in my neurological story has been a bit of a shock to the system. Not only do I have a high grade, aggressive tumor potentially lurking in the folds of my grey matter, but now I’ve got an escalation of my seizure status to ‘potentially life threatening.’ Oddly enough, I feel more infirmed now than I did when I was going through chemo and radiation. I mean, physically I feel better, but psychologically I feel more infirmed. I’ve got two neurological conditions that could kill me within a heartbeat. The number of drugs I take now, WITHOUT chemo, is daunting. I’m counting pills and making tick marks on a chart just to keep track of what I’ve taken.

Don’t get me wrong, if it keeps me alive, I’ll do it. But I’ve always been a bit of a hippy when it comes to putting toxins into my system. I’d LOVE to find an alternative, but I know I may not have the time to test out any alternatives. Having said that, has anyone tried neuro-acupuncture?

I’m slowly coming out of my pity party, so don’t fret. In spite of my lingering fear and adjusting to the new developments in my brain, it was a good day. I’ll be strong, courageous, and optimistic tomorrow. Tomorrow will be another good day.

Fear and Loathing in My Brain

After my little adventure a week and a half ago, I’m feeling a greater level of fear than I have in a while. I didn’t skip any of my medicine, I was feeling pretty great, celebrating a good MRI and yet I ended up having a ‘life threatening’ seizure episode.

I know the seizure event itself will knock me on my ass for a few days, but I’ve also increased my medication. It takes a while for my body to adjust to that as well. I find that I’m hyperconscious about every feeling, sensation, pain, or even thought I experience. Before my most recent episode, I was focused on speech, memory, mood as indicators that the tumor has returned. Now that I know that my expressive aphasia is a seizure and not an aura AND I’ve been instructed to use emergency meds to ward off a full blown seizure (or more terrifyingly, a series of life-threatening seizures) at the first sign of an aura, I’m ever aware of every sensation. Dizziness, nausea, sudden emotional changes, rising sense of cold… I may have had some of that before, but what got my attention was not being able to speak, and we’re aiming for whatever happens before that.

I know that lack of sleep and anxiety are risk factors for me, based on what we know at this point. But I feel like I’m starting over, trying to figure out my threshold for seizures – do I have other triggers that I’m not aware of? There are so many possibilities. Food additives, food sensitivities, smells, hormonal changes, certain sounds, barometric pressure changes, insulin levels, and so on. Then there are the possible auras: deja vu, numbness, tingling, sudden nausea, anxiety, fear, suddenly getting hot or cold, weakness, lightheadedness, strange smells or tastes, bright lights, blind spots, sensitivity to light or sounds, along with cognitive changes – like aphasia, just to name a few.

As a migraine sufferer – I’m experienced with the concept of triggers or early warning signs – but somehow the urgency to figure this out is greater…something about ‘potentially life-threatening’ I guess. Our trip to the Farmer’s Market was cut short yesterday because I ‘felt weird’ – a sense of cold rising up my body immediately before some panic and shaking set in. We’re a little gun shy, uncertain, and overly cautious, so Ativan was taken and we promptly went home. I’d be more confident about warning signs if I had full energy back and some sinus congestion didn’t make me a little wobbly.  I’m usually pretty in tune with my body, but this is a whole new set of symptoms, meanings, and risks.

We see an epileptologist tomorrow to learn more about what’s happening and what we can do to avoid another seizure. I have a feeling it won’t be a fully satisfying visit – questions unanswerable, mysteries of the brain, etc…  If he tells me I should wear a helmet, I’m going to be very disappointed.

 

In other news: We are already more than half way to our goal of $10k for the National Brain Tumor Society Silicon Valley Walk. I am feeling the love and support of so many friends and family. So, I’ve got that going for me, which is nice. Very, very nice.

Consider joining us or making a donation here:  EveryDayLeft Right Left

 

 

Good News, Bad News

I had my MRI on Wednesday this week – my first in the 12 week interval schedule. Given the hospital construction, things are a little discombobulated. The MRI machine I was taken to was in a trailer in the parking lot. I felt like I was being brought into one of those cheesy traveling carnival rides – like a fun house. Otherwise, it was the essentially the same experience as all of my other MRIs.

There were some changes in my brain since my last MRI, but nothing concerning – they assume it’s still healing and scar tissue and not new tumor growth. So there’s the good news.

I was so excited that I decided to celebrate by having a seizure and spending the night in the hospital.

Apparently my seizure aura (warning that a seizure is coming) really IS expressive aphasia. For those of you who don’t know, that’s when I can’t get the words from my brain to my mouth to speak or hands to write. (I don’t remember any of this, mind you, but it’s what I was told happened.) I went inside, lay down and could speak again. Then I couldn’t. When I got up to go to Stanford (my husband driving), I had a seizure. I go all out with mine – full grand mal. Then I had another…and another. An ambulance was called and I had another in the truck as I was carted off to the closest emergency room. Tests, drugs, and some more drugs later I was determined to be healthy – essentially no strokes or brain bleeds and since I’d just gotten my MRI results, we knew the tumor wasn’t back. My anti-seizure medicine was increased. I was kept for observation overnight and had the joy of being woken up from my drug induced state every couple of hours all night long.

There is some speculation about why I had a seizure since I didn’t miss any doses of my meds and we had proof the tumor wasn’t back. Exhaustion, stress, migraine were all brought up as possible triggers. I refrained from saying, ‘that giant hole in my brain doesn’t have any impact?’ One question I had was why my aphasia would go away when I lay down. I don’t think we got an answer. I don’t remember most of those 24 hours, to be honest.

Eventually, they decided to set me free. I’ve now come home to rest, recover (every muscle in my body is sore) and get my head around losing my freedom of driving again. Anyone want to carpool?

We see my Neuro-oncologist on Wednesday, so we’ll hopefully find out more then about what this exciting event does to our treatment plan.