Itchy, Scratchy, AAACHOOO!!!

I’ve decided that having seizures is stupid. I didn’t sign up for it and I’d like to return that part of the Brain Cancer Special.  Wait…No…I’d actually just like a full refund. I’d like to return the whole package, please.

I had my vaccine shots yesterday (or we hope they are, anyway) and met with my Neuro-oncologist. He’s got a resident in rotation who is VERY thorough, sharing a lot of great information. We end up having longer visits, but we leave feeling like we’ve learned something.

What we learned yesterday:

1. What I experienced last week was Status Epilepticus. The scary reality is that IT may kill me before the brain cancer does. I know that sounds morbid, but it’s true. I now have emergency medicine and everyone in the house, friends, neighbors will be taught what to do if I have a seizure.

2. My Expressive Aphasia is likely a focal seizure rather than an aura. I’d suspected that may be the case, but the doctors agree. Since it seems to happen first, I find that every once in a while I’ll talk to myself out loud, just to make sure I can.

3. I likely had seizures because I’d been so anxious about the MRI and had been sleeping poorly. It’s doubtful that the 1/4 of a pickle martini I drank triggered them. I’m now back on an 8 week MRI cycle to reduce the anxiety.

4. There MAY be a correlation between migraine and seizure – but it’s very debatable, kind of like the chicken and the egg.

It’s taking longer than I’d expected to recover from this event. It may be adjusting to the new medication doses just as much as the seizures themselves. My energy level is low and I’m a little slower mentally – no quick retorts from me this week. Just getting my head around this new development is a little overwhelming and I may start wearing a helmet in addition to carrying Ativan in my pocket 24/7.

In other news: My vaccine shot site is itchy – enough to wake me up. The dog is still itchy – enough to wake me up. And I feel like I’m fighting a fall cold – but I may just be run down and recovering. Tea with lemon, honey, and cinnamon tasted delicious last night and I feel a little better this morning, so hopefully I’ll bounce back at any moment.

My mom is here helping out and I can’t express how much we appreciate her. When she leaves, we’ll be getting around on bikes – so I’m shopping for saddle bags.


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.