brain

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A few days ago I was at a little store here on The Big Island and the sales lady told me she was an 18-year cancer survivor and that she had fought it for nine years before she got through it. I don’t know what kind of cancer she had or what stage it was. “Don’t give up,” she told me. Her advice has stayed with me. When I get that swelling around the brain and start throwing up every few seconds and can’t stand upright and end up in the hospital, sometimes I wonder, Is it worth it to continue? But talking with another survivor certainly helps and offers hope.

dscn01602This little cove on The Big Island is such a healing, gentle place. I am at the beach now, the sun is out, and the colors of the water are stunning — a soft sea-glass green, aquas, turquoise, then a deep calm blue and lavender farther out. The sand seems to glow with the warmth of the light. The vegetation is vivid green, and the flowers are brilliant. I plan to sketch palm trees today in their tall grace. Birds are singing; I think they are mostly house wrens, although there are three brightly-colored parrots near the cafe with their wings clipped, I believe. They seem to resent their captivity greatly and shriek like chimps. There are a few half-grown cats near the cafe also — probably from the same litter — and diners feed them scraps. I saw one of these graceful kitties on the beach last night from our lanai on the fifth floor. Maybe the parrots are watching those kittens grow up beneath their tree and getting nervous.

The water is quite warm and we go in almost every day, although I tend to list to the left from the effects of brain surgery. I can do a sort of frog paddle/breast stroke with splayed fingers. It feels good to swim and the cove is usually calm.

Of course, surviving cancer isn’t about not “giving up.” If that were true, we’d have a lot more survivors. Sometimes the body just can no longer deal with the invasion or we run out of medical options. One of the hardest things for me to consider is that I may have outlived my usefulness on earth. Hopefully some more physical therapy will help my hand. I am keeping up with my hand exercises here. My neurosurgeon said the brain takes a long time to heal. And patience — especially with myself — has never been my strong suit. So we will see how this year goes. Hope there are not too many errors in this post typed with one hand.

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So here we are in Hawaii in an absolutely idyllic location overlooking a beautiful small ocean cove. Lovely room, comfy bed, serene surroundings, and a kind, attentive, and loving husband to be sure I get around safely. I use a cane or walker now and am trying to learn to walk again after the brain surgery in March messed up my left side so badly. I am trying to learn to walk faster than the beautiful little baby who lives behind us. But she is already way ahead of me with her growing brain….all as it should be.

A couple of weeks ago I was told that I might only have 3-6 months left if I chose no more treatment. That’s when we decided not to postpone our vacation plans further. And we also decided go ahead with the laser brain surgery. Because in spite of all the problems in our world, it is still a beautiful world and I am not ready to say good-bye to the lovely outdoors yet. Or to my loving and beloved family and friends.

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News

Last week I was informed by my neurosurgeon (I asked) that with no further treatment I have 3-6 months left.

Lots of tears. Aaand on to the next procedure. I had the open-brain surgery last month which has left me with a very uncoordinated left hand. So now I’m keyboarding with one hand which is a major annoyance when you’re used to using both hands.

But of course that’s the least of it all. I still have a tumor in my cerebellum. The med team is going to laser it tomorrow morning (Gamma knife again) to try to buy me more time. Cliff has been a gem through all this — so supportive — and of course it’s always hard on everyone, including my two wonderful kids. It’s just way life goes sometimes. At least I got to marry a fine man and raise my children and live in this beautiful world.

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Oh wait, it is. I’m going in for brain surgery tomorrow. The neurosurgeon will remove the two tumors that are growing in my left cerebellum.

I suppose I should be worried, but I’m not at all. I got two opinions from top neurosurgeons, and they both said this was necessary surgery and that gamma knife surgery is not a good option for these tumors.

So I really don’t have a choice, and I’m going for it. I may have some coordination/balance issues afterwards, but I’ll just do the best I can. Hopefully, with time, activity, and physical therapy, this will improve.

Also tomorrrow I’ll have my fourth brain MRI in a month…bam bam bam bam. Those things are loud. But they give important data, so onward we go.

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Brain surgery

I just received a phone call from my neurosurgeon. He has reviewed the results of the MRI I had done this morning. A couple of the tumors in my cerebellum have grown, and he recommends going in and removing them rather than lasering them.

So I am scheduled for invasive brain surgery on Monday at 4pm.

I’m not looking forward to being in the hospital again so soon. It seems as if I just got out. But I have had severe headaches lately and am unsteady on my feet, so maybe this will take care of the symptoms…or at least prevent the symptoms from getting worse.

I am expecting physical therapy afterwards because the surgeon is going to have to cut through healthy brain tissue.

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About six weeks ago, I didn’t think I would be able to live out the year. I learned that I have at least two more metastases in my cerebellum, in the balance & coordination area.

Then I suddenly began throwing up and couldn’t stand upright. I drove to the oncologist for rehydration, and they wheeled me right over to the hospital and checked me in.

There is no cancer showing up in my body now, only in my cerebellum. It’s unusual enough that the med team was concerned it was a new kind of cancer. They are reluctant to go through healthy brain tissue to take a biopsy, but a biopsy is the only way they’ll know what kind of cancer it really is. Because of the risks to my motor skills (vroom vroom), they are going on the data they have, which is of course colon cancer.

It seems that a tumor or else some edemic necrotic tissue (from the gamma knife surgery last year) was pressing on my cerebellum, causing the symptoms. After four days in the hospital and a high dose of steroids to reduce the swelling, I was released. Hurray.

I’ll have another brain MRI this Thursday, then meet with a second neurosurgeon the following Tuesday. After that, I will have some kind of brain procedure (probably gamma knife again) to kill the tumors.

I’ll get some time to recover from that, which may involve some PT, and then I’ll be starting some chemo. It won’t be hard and heavy chemo, as I had before (twelve rounds every two weeks for six months). This time I’ll have a couple of rounds, then be allowed to recuperate, then a couple more rounds, etc. — more sporadic. The med team thinks the cancer is lurking in my body on a microscopic (i.e., non-tumor-size) level, and they want to go after it.

All this recent news made my husband, children, and me very somber at first. I wasn’t weepy, but of course none of this is good news.

But we are working through it and treasuring our time together, and now I am feeling remarkably peaceful about it all. I am painting, cooking new recipes, hiking, doing yoga again, enjoying my family and three loving pets, and I’m even doing a little knitting, now that our golden is a year old and not such a terror with yarn.

Regardless of our circumstances, there is always so much to be grateful for. I have wept many tears on our back patio, which is sort of a sanctuary for me. But recently just standing out there and taking some deep breaths of fresh, crisp winter air feels healing to me. It seems to clear my head and give me hope.

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Not as laid back about this news as I thought. It’s almost 3am and I can’t sleep, wondering what malformation in my brain…if I will live another 15 years or if I will live another minute.

And not wishing to be dramatic about it. After all, it is smaller than it was three months ago. We’re going in the right direction.

Let it go, let it go, let it go.

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Brain MRI

The experts are not agreeing. I may never know if I had a metastasis to my brain or not. Anyhow, I had a brain MRI yesterday, and whatever it is has reduced in size. That is good news!

The radiologist thinks it could be some kind of bleeding thing instead of a met, but the neurosurgeon disagrees. One of the oncologists agrees with the neurosurgeon, the other one sides with the radiologist.

I’m sort of easy-going about it all this time. What else can I do? I don’t know what to worry about…a met? an aneurysm? It’s all too much, so I’m just trying to go with the flow.

In a day or so, I may have more info. So I’ll wait and see.

My oncology file is very large. When I commented on it, the oncologist smiled and told me it was better than having a thin file.

Let the nodule diminish and that file keep growing.

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Lasering of the brain

Doing fine after the gamma knife laser surgery on my brain. I even have some super-flattering photos to share.

Here I am with three ponytails (one’s in the back) just to make me look extra cute. Okay, it’s really so the surgeon can screw the frame into my head where the hair is parted without having to go through hair or shave any of it off. You can see the two front screws going into my forehead.

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Here they have put a dome on my head. I don’t remember why, but I guess it was necessary at the time.

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The goofy smiles are because you’re always supposed to smile for the camera, right? And I was on some meds….

This photo is after the procedure. They put me in a hospital bed and fed me…a big magenta flower? I don’t remember the flower. I probably ate it.

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My neurosurgeon and a physicist monitored the whole procedure. The physicist checked in on me all the time, very comforting. They were very pleased and said they were confident it was a success. The MRI in July will give them more data about the results.

The nodule was in the balance area of my cerebellum, and I have had no balance problems since the procedure.

Today is my brother’s birthday. Happy birthday, Doug!

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Apparently there is a colon cancer metastasis in my brain about 1cm in diameter, and it is growing. The news was hard to hear. I was sent to a neurosurgeon for a plan of action.

Sooo, tomorrow I go in for gamma knife brain surgery. No cutting, just lots of laser beams aimed into my head, killing whatever is at their point of intersection — in this case, the metastasis in my cerebellum.

I will be able to go home the same day. Brain surgery has come a long way.

On a happier note, we are adjusting to a new puppy in our household. Molly is a ten-week-old golden retriever. She joins Jesse the bichon and Romi the cat. The housetraining is a pain, but she has given us many laughs during the two weeks we have had her.

Molly and pals

Molly and pals

Our cat likes dogs, so that adjustment has been smooth. Jesse the bichon was not too sure about Molly for a while but is playing with her now.

Also fun: Cliff and I just got back from visiting the elementary school where our daughter teaches art. They are having an all-school art show this evening, and we were very impressed with the kids’ artwork. Our son showed up too, so the family was all together.

On brain surgery eve, all is well in our household. And Romi the cat is at the keyboard, supervising my writing.

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