Progress Report: 11-1-15

A little late, I know.

I had a follow up MRI on the 14th. As expected, the good news was too good. I guess that’s ‘as expected’ from me, really. There is some follow up growth. Not terrible growth, but some growth.

The doctor decided to take me off the Temodar – ‘to save my bone marrow’ – but continue the Avistan with a follow up MRI in 5 weeks. That takes me from every 3 months to every 5 weeks.

We did have another National Brain Tumor Society walk again this year. We were the number one fundraiser for the third year in a row. Woo Hoo! Thank you to all of you who donated to our cause. It means a lot to help this organization reach their goals.

I did make some new friends this year. Josh, who I met through our sons playing soccer together, is writing his own blog at oligojourney.blogspot.com. You should go check it out to see what someone else fighting a brain tumor is going through.

I had a few setbacks – explained, I’m sure – with my progress. I’ve had a couple of fainting spells when I was fighting a nasty, aweful migraine. I’m sure it was due to the fact that I hadn’t eaten like normal and it was due to head rushes – bad head rushes. I also had a fall on my way into the Testarossa winery. I’m sure that was a slip and fall due to stepping off the edge of the sidewalk – where there was a lip – and just not being able to catch myself. I’ve also had a few talking misdemeanors (like that…misdemeanors) where I’m thinking one thing and saying something completely different. I’ve become more sensitive to sound. I’m sure I’m looking for everything to tell me what’s happening in my brain isn’t more tumor growth. I’m not sure that’s working very well.

So, to continue with the Avistan, minus the Temodar, with another MRI in 5 (well, now 3) weeks. There have been some minor changes, but I’m hoping they’re minimum.

 

 

 

Battle Wounds

There are doctor visits where I come away with wounds. Slightly less dramatic than an arterial line bruise that lasts weeks or a craniotomy scar, but that experience was a while ago. Wounds these days usually occur when my veins don’t cooperate. They might also include some emotional wounds, but those aren’t visible to the naked eye.

So, as I mentioned in my last post, I was going in for an MRI last Friday. I’ve gotten to the point where I can fill out the necessary pre-MRI form without reading the long list of questions about potential ailments and metal implants. I should have a stamp made for my drug allergies. When they ask if I’ve had previous scans, I say ‘too many to count’. When they ask the date of my last scan, I say ‘8 weeks ago’ and ‘8 weeks before that’. I’ve stopped trying to remember dates. Clearly I’m not a fan of having to fill out this form repeatedly. And I get to do it again in a month! Yippee!

My MRIs require contrast, so each one requires an IV. Sometimes the nurse gets lucky, sometimes not. This last one fell into the ‘sometimes not’ category. Two nurses, two failed attempts and one success sticking my tiny, scarred veins with a tube to insert some strange chemical into my veins while they’re scanning my brain. MRI rooms are ALWAYS freezing cold, warm blankets are a must – never turn the offer down. They also help keep you warm if you’re prone to napping during the scan. I am. I ask them to refrain from talking to me as each section of the scan experience is about to begin so that I can have a little snooze.

They tell me my results will be available in one to two business days. I say, ‘I’ll see them at 11:00 today. Thank you, have a great day. See you in a month.’ This isn’t my first time to the rodeo.

First bruise begins.

The waiting begins to see my neuro-oncologist. He’s usually over scheduled, rooms are overbooked, and he actually spends time with his patients if they need his time or he’s got news for them – usually bad news. I typically don’t mind waiting since I’ve been hearing nothing but good news for so long, but this time I was anxious. There have been signs of inflammation OR a tumor making its comeback. My MRIs are more frequent. We’ve discussed our approach of ‘waiting/monitoring’ since whatever it is has been growing slowly (GBMs are reported to double in size every two weeks) bringing the tumor regrowth theory into question. We’ve discussed our options in a distant, ‘don’t need to do anything now’ manner. But when something other than an empty spot and scarring shows up, the anxiety level raises slightly. This MRI showed that  questionable area growing…maybe. We don’t know what it is, BUT all of a sudden our discussions about potential next steps became more serious. More like we needed to consider which of those options we would like to pursue and what it would mean to my participation in the vaccine trial.

The invisible mental wound begins.

I went across the street for my vaccine shots. I have my vitals taken for the second time in the period of an hour. My temperature was the same, in case you were wondering. In these visits they have to draw blood for the study’s purposes. I don’t know, honestly, which test they’re running since I don’t get the results. When I get a nurse who knows my veins and their temperamental ways, it usually only takes one attempt. One and done. But this time, despite the success, my vein showed its displeasure.

Second bruise begins.

My vaccine shots involve a rotation between my right and left legs. This was my right leg’s turn. A circle is drawn with a Sharpie. No bunny ears or flower additions this time. My regular team of nurses and coordinators had the day off. Then four intradermal shots are injected around that boring, unadorned circle. They swell, turn pink and become itchy almost immediately. That lasts for a few days.

The vaccine ‘wound’ begins.

This has become such a regular MRI/vaccine day for me, that I’m largely unfazed by it all. This was slightly different given the wounds of the day. I’m hoping I can go back to unfazed on May 1st. But, I understand that given my survival thus far, I may be on borrowed time. Until I survive through the next steps, whatever they may be. Then I’ll go back to being unfazed.

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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?

 

 

Today: 6/6/2013

Today is the second to last day of school. My baby graduates from Kindergarten tomorrow. My other baby will be a 5th grader.

Today everyone is feeling good – no sign of tummy bugs and chemo has ‘left the building’.

Today, my eldest pulled out her own tooth – don’t worry, it was ready to come out. Hoping that her retainer will now fit again…

Today I start a new book – I’ve just finished ‘Don’t Let’s Go To The Dogs Tonight’ – and I’m looking forward to exploring all of my options and talking about them with friends.

Today I need to get some laundry done…and maybe pick up the house a bit.

Today I have officially resigned from my job after nearly 15 years at the company. No regrets.

Today I drive to Stanford to get my monthly vaccine shots. Right leg today. The Hulk(s) are frozen and ready.

Today I’ll try not to worry too much about what my MRI next Friday might show.

Today, we’ll eat a frozen treat after school, practice our breakdancing moves, and enjoy the warm weather.

All for Science…and Hope

After the 6 week “chemorad” adventure (chemo+radiation), the standard course of treatment is 5 days of chemo (at double the dose from the 6 weeks) every month. Giving me about 23 days or so between. I’ll get back to that later.

One of the things about cancer is that we haven’t quite figured it out, in case you hadn’t heard. We don’t really know what causes it – though there are some pretty good guesses in many cases. We know something about how to treat cancers – some more successful than others. We can’t cure it…yet.  And there are LOTS of ideas and theories about how to treat it and those ideas have changed dramatically over the years.

This one is interesting to me at the moment about preventing and treating cancer. I’ll talk more about why another time.

William Li – Anti-angiogenisis

One good thing about all of this focus on treating and hopefully curing cancer is that there are options. If one drug doesn’t work, there’s another.  Nutrition and diet are gaining attention not only in the treatment, but in the prevention of cancer. The mind-body connection – exercise, meditation, positive attitude – is recognized as a benefit in treatment success.  And then there are the clinical trials. I’m not a HUGE fan of putting drugs, let alone experimental drugs, in my body – but if there’s a chance it will help me survive, I’m game to try and willing to risk the side effects.

Turns out I have (or had…it’s ‘gone’, remember?) a protein in my tumor that was necessary to qualify for a Phase 3 trial of a vaccine that’s intended to teach my body to fight those darned brain cancer cells. OK, well maybe it’s more complicated than that, but it involves big words and things I don’t really understand. I am test subject xxxx in a double blind phase 3 trial of said vaccine. I may be getting the vaccine, I may not…but there’s a 50-50 chance I am AND I’m doing my part for science AND it bolsters my sense of hope that I’m going to beat this thing.

What the study entails (in addition to everything for the standard treatment) is another visit with the vampires, peeing in a cup, and getting four intradermal injections in my thigh each month. It’s not hard and doesn’t hurt…much. It takes up some time. But, honestly the worst part is the itching post injection – which lasts for about 3 days. They tell me that indicates an immune response (which is good), but imagine super hives, concentrated on a very small area of your leg. I’ve figured out that if I’m wearing jeans, I can fit one of my kids’ ‘owie’ ice pack in the front pocket and I have a hands-free form of temporary relief. I can’t take allergy medicine or use hydrocortisone creams, so ice packs are it. So far, I can handle that, but allergy season is kicking in, so we’ll see how this goes. As I’m sneezing uncontrollably, I’ll try to remember that I survived brain surgery and my 6 week very un-spa treatment. Homeopathic remedies anyone?

Assuming I have no new tumor growth – this chemo/vaccine routine will continue ad infinitum – i.e. for the rest of my life, however long that is. IF I do get tumor growth, we go with new treatment plans and potential new trials…but we hope it won’t come to that.