Guest Blog Series - Anonymous

It's the first Friday of the month, and that means GUEST BLOGGER! I am loving reading other people's perspectives, their feelings, their experiences with their cancer and how it effects their daily life. When I received this article, I immediately started reading it aloud to Dan. We were both floored by her candidness, and her ability to get us chuckling in one minute, then nodding our heads in agreement, then cringing. Her writing is organic and true, and I love it. I'm very grateful to Anonymous and Lone Wolf for participating in the Guest Blog Series. 

Jess, the guest column idea looks like a good one. I was completely absorbed by Lone Wolf’s description of her experiences, partly because she writes well but mostly because she writes well about shared experiences. 

Take the “tell your friends or not” issue. When I was diagnosed, I wanted to keep a low profile but it seemed to be hard for my family and against the advice I was getting from the experts. “Let your friends in,” one writer urged. “Keeping a serious illness under wraps is like trying to keep a beach ball underwater,” another noted. True enough.

I ended up writing about my diagnosis and sending installments via email. Of course, once you start that, everybody knows – and they want to know more. Human nature is well-intentioned but it didn’t take me long to cringe at the eventually predictable conversations. Me: “Hey, how’re you doing?” Friend, “No the question is how are YOU doing?” There’s a certain look in the eye. It sets me apart. It makes me feel somehow targeted whether I feel like talking or not. Even whether I know who’s asking or not. Word gets around. Cancer is interesting. A grocery clerk at a local store invariably approaches me when I come in to ask how I’m doing. I have no idea who she is but I know the look and the sound of the voice. The cancer survivor has entered the store. (One of my sort-of friends announced at Market Place in a loud voice, “She’s a cancer survivor.” What gets into these people?) 

I’m doing very well right now but this has been an ordeal. Chemotherapy and radiation are not fun and all of us who go through the treatments know the peculiar fear. What is this stuff doing to me? After-effects aren’t pleasant either, but all of it has been manageable and I feel good about life in general, that is until I get into another conversation with one of our relatives who likes to tell me, “I would never put that poison in my body.” 

So far I am unfairly attacking my poor well-meaning friends/family but unfortunately there is no perfect formula for talking about cancer so I can’t adequately advise people when I would just like them to shut up. Just let me go back to being normal and benign. Try to forget everything I’ve told you. 

I have always been a hypochondriac but I am now beyond belief. Remember Veda in “My Girl?” She was so afflicted that she thought she had prostate cancer. I am just about that bad. Currently I’m certain that I have breast cancer, tongue cancer, and brain cancer but I have not (yet) seen an oncologist about any of these. “Riddled” with cancer as I’ve heard it said. I am tempted to go hunting for symptoms but the Internet is a terrible place to look for information. If you look for fatalities caused by hang nails and acne, you will find them. 

Then, too, sometimes the people who should know better, do not. I went to see a specialist in Bellingham about two weeks into this “journey” (“journey” is as popular as “survivor”) without realizing that she is a heartless witch. I asked for three things, a clear diagnosis, the options for treatment, and some hope. I got the first two but the third wasn’t in her repertoire. Instead of hope she gave me the odds – the odds against survival beyond a couple of years, the odds in favor of recurrence, the odds in favor of the grim reaper coming to call. I was stunned into silence – a rarity for me. 

So…here I am, feeling good, feeling smarter, loving my family and some of my friends more than ever, looking forward to summer, and gaining inspiration from others. Some of them are celebrities. Joan Lunden appeared bald on the covers of magazines, Angelina Jolie has undertaken extremely brave measures to assess in advance any cancer that might be genetically ready to pounce, and Jennifer Griffin, a tv news analyst, diagnosed in 2009, has conquered triple negative breast cancer. These women and many others keep my optimism intact. True for my admiration for Jess too although she resists the pedestal. 

Jennifer Griffin said this: “The problem is we all think we will live forever. Cancer stops you in your tracks and makes you think about how you want to live your life.” And that’s the truth. 


Anonymous

UW Results

As always, we have to confirm with UCLA, but the preliminary findings of my MRI is stable. The FLAIR signal in the tumor cavity is slightly increased. However there is no enhancement, and no new nodular area. There's a venus abnormality that they've been watching, but I'm not too concerned about it.

All-in-all a great scan. I had been terrified, even convinced that there would be a new lesion, since I've been eating horribly, including a 20 lb weight gain - pure sugar. I've always equated excess calories as food for the tumor so the fact that there isn't obvious tumor growth is a freaking miracle. Apparently diet isn't the end-all-be-all of cancer growth. (I'm sure it matters, but who knows how much, and for which cancers, and which people?)

I'm obviously relieved, and can now focus on treating myself well because I want to. I can exercise, and eat right, because it's fun, not because I'm scared and feel responsible. I had been punishing myself, even daring the cancer to come back and prove me right. I know that sounds disgusting, and selfish. I felt that when I get good results, when I succeed, I still watch my friends get sicker. So if I have a good scan, I lose. And if I have a bad scan, I lose. I lose either way. I feel guilty being "heathy", even though cancer has taken so much from me. From us. 

It's really hard to be fearless in this situation, and very hard to not get stuck. It's time for me to stop punishing myself for success, for my good fortune and hard work. I don't know how to manifest that, to forgive myself for being alive, for being able to mow the lawn just now. That guilt has no place, I realize it, but it's there nonetheless. 

On Wednesday, through the help of a girlfriend, I was able to take my nephew KC to We Day (http://www.weday.com) where I watched thousands of seventh grade world changers. The kids are fearless, they're kind, they're big thinkers and problem solvers. I'm going to try to harness their spirit and attitude to get outside of myself. When I get in a rut, when I feel paralyzed, I need to remind myself to find inspiration. It always helps. For being an extrovert, I can certainly disappear from friends, from family, I can get scared, and filled with denial and avoidance, and that's fine from time to time, but if we don't look out, and see what's around us, who needs help, how you can have a positive impact on those around you, then what's the point. 

I'm just really relieved about this first set of results, and grateful that I didn't shoot myself in the foot with diet and lifestyle choices. One of the saddest things that we can do in life is give up, or take our health for granted. I'm embarrassed to say that I feel like I kind of had. But not any longer. There's probably a fine line  between giving up and enjoying yourself, and one of these days I'm sure I'll figure it out.

Seizure Help

Hey Friends,

Here's the deal, I talk to a lot of brain tumor patients, and caregivers, about seizures. And although none are the same, there are often similarities, and definitely tricks. Even though each person's situation is unique, there is almost always overlap. Last night I received an email from a caregiver about his wife's seizures - a GBM patient. She switched from Keppra to valproic acid and vipmat several months ago, and had been fine, then twice in the past week she has had seizures. Each time she is forced back into the hospital is a major setback. She loses more weight (her weight is hovering in the 70's ), and becomes weaker. In corresponding, I asked him if I could bring it up for discussion on the blog, hoping that people could share their successes and failures to help troubleshoot. 

I feel bad because I've talked to so many of you about these issues, the side effects, the trial and error of seizure drugs, the specific triggers, but I can't remember everything that you all have said. Would you be so kind to share, even anonymously? I know it would be a huge help.

I remember when a caregiver told me that he gets his wife's blood levels checked regularly to make sure that her seizure meds are at the correct levels, not too high nor too low. When I heard that I was floored. I had no idea that your blood levels could be checked, or that every body metabolizes drugs differently. That it doesn't have to be trial and error, and it doesn't have to be a shot in the dark. The more we talk the more we know what to ask for, and how to help ourselves.

So if you could please share and answer as many of these questions, or whatever you're comfortable with, both he and I would be incredibly grateful (and please, elaborate, or share what you have found helpful if it hasn't been included on his list below):

My questions are this, if you don't mind:

1. Do you get major seizures or minor ones?
2. Do you go to the hospital after each one?
3. What meds are you on? I see that you wrote about keppra and I think you got yourself off that but I'm not sure what you're on. Do you mind telling me?
4. How do you think it works for you?

Here were my answers:

1. I have had a few grand mals, but now have simple partial seizures since I've been able to control them. I take lorazepam when I don't get enough sleep, I'm careful to keep my blood sugar stable, I drink a lot of water, I limit emotional and physical stress, I don't over do stimulation (sunglasses, overheating, loud noises). Every person's seizure triggers are unique. 

2. I no longer go to the hospital for seizures. I stopped because it seemed like no point, they just monitor me and pump me full of more drugs.

3. I've tried three different kinds and none stopped the seizures. I can't even remember which ones other than Keppra. So now I just take a lorazepam when I feel an aura coming on. 

4. I've been able to manage my seizures quite well. For example, I just had to do a minor surgery in my mouth which causes seizures, it's the epinephrine in the numbing shots which has been well documented in causing seizures in epileptics and I am no exception, so I took 2 mg of alozepram which is heavy duty Xanax and had no problems. Although I did sleep 10 hours afterward.