"Don't ever forget to hold close the people you love"
A Malaysia Airline plane went missing a few weeks ago. This morning, on the news, the parents of one of the people on that plane were being interviewed. Their son had recently spent a week with them. The mother was saying what a blessing it was that they had spent that time together. Above are that mother's words.
Here's the thing. We all know on some level that this could be the last time we see a loved one. But we are so filled with magic thinking that we cannot really imagine that life is that fragile.
My brother, Dale, spent a year living with our mother. I was annoyed and some times resentful. My mom was disabled, and yet, she would cook soup for Dale when he got home from work. It didn't sit right with me. We should be taking care of her not the other way around.
Then, the unthinkable did happen. Dale died. He was killed in an accident. Who new? Who could have imagined that this horror would happen? All of a sudden everything changed. And I learned that it had been a gift, not a burden, to help him out. Our mother got to feel useful. She got to know the adult Dale. She was so grateful for having that year with her only son. Who could have known?
Where is all of this coming from? Well, I started with the quote from the mom on the news.
I think about death and dying a lot. I don't think I am morbid. Just real. I have my own magical thinking. Wishful thinking maybe? We all die. We all spending our lives trying to evade death. We cannot win. So, what difference does it make what we do or how we live our lives? I honestly don't know. I think for many people, if not most, religion answers the questions no person can. There are the beliefs that we will go to heaven or hell. Why? Why do we need to think that? I guess it gives a reason for something that is totally unreasonable.
I have had several brushes with death. Birth being the first time. By being born and surviving, I defied death by making that perilous journey. I have given birth 5 times. I have lost 2 babies. Life and death, both coming out of my body. Sharing my life and transforming it.
And now I have this tumor in my head. Apparently, I could have gone through my whole life, however long or short, and never known about the tumor. Or, it could change and be the cause of my death, I know that there is a tendency to make light of it and say I will be okay. And I keep saying I am going to be fine. How can I say that? I don't honestly know that I will be alright. But I feel like I will be. Am I being superstitious? Is this my religion?
Time, as always, will tell.
Wednesday, March 26, 2014
I am not my tumor
Benign Brain Tumor Symptoms
Medical Author:
Medical Editor:
Benign brain tumors, however, can be life-threatening because they can compress brain tissue and other structures inside the skull, so the term "benign" can be misleading. Terminology is further complicated by some investigators who classify low-grade cancerous tumors as either "benign" or "relatively benign." Regardless, compression of brain tissue or its additional structures (for example, nerves, ventricles) by a tumor mass is a major cause of the symptoms seen with benign (and malignant) tumors.
Symptoms (signs) of benign brain tumors often are not specific. The following is a list of symptoms that, alone or combined, can be caused by benign brain tumors; unfortunately, these symptoms can occur in many other diseases:
- vision problems
- hearing problems
- balance problems
- changes in mental ability (for example, concentration, memory, speech)
- seizures, muscle jerking
- change in sense of smell
- nausea/vomiting
- facial paralysis
- headaches
- numbness in extremities
- meningioma - tumor arising from the membranes covering the brain and spinal cord; this accounts for about 20% of brain tumors
- schwannoma (also termed acoustic neuroma) - tumor in the 8th cranial nerve arising from Schwann cells (insulating cells of the nervous system); this accounts for about 9% of all brain tumors
- pituitary adenomas - pituitary gland tumor; this accounts for about 8% of brain tumors
- hemangioblastomasa - vascular tissue mass, sometimes cystic; this accounts for about 2% of brain tumors
- craniopharyngioma - a cystic tumor from cell remnants of Rathke's pouch (nasopharynx), usually occurring in children; this accounts for about 1%-3% of brain tumors
- choroid plexus papilloma—choroid plexus tissue (the tissue responsible for the production of cerebrospinal fluid or CSF) mass that blocks cerebrospinal fluid flow, usually in children; this accounts for less than 1% of brain tumors
Treatment of benign brain tumors is similar to other brain tumor treatments except that chemotherapy is seldom done. Treatment protocols are based on the patient's age, the location and size of the tumor, and the patient's overall condition. Brain surgery (craniotomy) with surgical removal of tumor and/or radiation therapy (for example, conventional radiation, gamma knife, proton beam) are the main treatments. Often other drugs such as corticosteroids that reduce edema (swelling) and help the brain heal are part of the treatment plan. Rarely are benign tumors untreatable.
Survival in children for all brain tumors is about 70%; long-term side effects (for example, vision problems, speech problems, decreased strength) are common. For adults, five-year survival is related to age group, with younger ages (20-44) surviving at about a 50% rate. Survival rate continues to decrease with age so that older (>65) patients have a much lower survival rate of about 5%. Survival for patients with benign tumors is usually much better for all age groups, but reliable data is sparse.
The best source of information about your benign tumor is your treatment team of doctors which is usually composed of a primary-care doctor, neurosurgeon, neurologist, radiologist and infrequently, an oncologist (a specialist in the treatment of cancer, if the tumor is considered "relatively" benign).
Monday, March 24, 2014
Hats!
A month or so ago I mailed a box with a couple of hats that I had made. The box never reached the recipient. Boo hiss. So this afternoon, after knitting a couple more hats, I mailed them off- this time registered mail that has to be signed for.
Morgan's girlfriend is named Mermaid and I decided, if she was interested, I would knit her a hat. She has only seen pictures so far, but she seems to like it:
The original package I sent, had two hats in it. One hat was for Mermaid's friend Sunflower, and the other was for Sunflower's new baby. I made a new hat for Sunflower and since I have a collection of baby hats, I sent another one of them too:
I don't really know how to drive the spacing on this blog, so this is the best I can come up with at the moment. Anyway, you get the idea.
In other news, I woke up with a terrible headache. I lay my head down on my arms and just cried for a few minutes. I don't think it helped at all, but sometimes I just need to acknowledge the pain even though I don't welcome it.
It's funny, I really have been able to get to sleep and stay asleep pretty well since finding out that I have a brain tumor. Why is that I wonder? I guess you shouldn't question the good things?
Morgan's girlfriend is named Mermaid and I decided, if she was interested, I would knit her a hat. She has only seen pictures so far, but she seems to like it:
The original package I sent, had two hats in it. One hat was for Mermaid's friend Sunflower, and the other was for Sunflower's new baby. I made a new hat for Sunflower and since I have a collection of baby hats, I sent another one of them too:
In other news, I woke up with a terrible headache. I lay my head down on my arms and just cried for a few minutes. I don't think it helped at all, but sometimes I just need to acknowledge the pain even though I don't welcome it.
It's funny, I really have been able to get to sleep and stay asleep pretty well since finding out that I have a brain tumor. Why is that I wonder? I guess you shouldn't question the good things?
Sunday, March 23, 2014
Vertigo out, Steroids in, Headaches staying put
The exercises that were done to get rid of my vertigo seem to have worked. Checking back in my notes, I see that I first mentioned the vertigo and generally feeling crummy on March 3rd. How about that! I didn't realize I had been troubled by it for so long.
I know that the headaches are more recent. I'm not sure exactly when they started. I started my new thyroid medication on February 14th which may or may not have anything to do with why I am having headaches.
I mean, after all, I DO really have a brain tumor. How weird is that to say?
I started on the steroids yesterday- a medrol pack. After two full days, I can say that there is some slight improvements in the headaches. Not sure why I put a plural "s" there since it is constant. We went out for a while this afternoon and I felt alright. Not wonderful, but good enough to enjoy myself. The steroids are making me feel a little "jumpy"
We went to a fiber fair in Vienna, VA. People, farmers, were selling their roving and they yarn and weaving gear. There was a circle of spinning wheels in the center of the room being worked on by a bunch of folks who look like they know what they are doing.
We have been to the bigger fiber fairs where there are barns and barns full of fiber/ yarn fare. But this was inside a community center, so it was big enough to see a great variety without getting worn out like we do at the big country fairs.
Of course, if I had a ton of money there are so many different yarns I would have bought. The hand spun alpaca wool. The hand painted lambs wool. The heavy Irish yarn to make an Irish sweater for Nick. It is all just such wonderful eye candy.
Here is a picture of Courtney wearing a long sweater I made for myself almost 40 years ago!
Today the weather was perfect. It got up to 70 degrees.
Tomorrow is supposed to be colder. Tuesday there is still talk of snow!
Oh yes, the exciting, almost tragic, non event of the day. There was a lock down at Dulles Town Center. There were reports of a gunman in the mall. Turns out, someone over heard a couple of women talking about shootings in malls and panicked and called the police. I am very happy that it turned out to be a non event!
Ok bed, here I come! Nite nite!
I know that the headaches are more recent. I'm not sure exactly when they started. I started my new thyroid medication on February 14th which may or may not have anything to do with why I am having headaches.
I mean, after all, I DO really have a brain tumor. How weird is that to say?
I started on the steroids yesterday- a medrol pack. After two full days, I can say that there is some slight improvements in the headaches. Not sure why I put a plural "s" there since it is constant. We went out for a while this afternoon and I felt alright. Not wonderful, but good enough to enjoy myself. The steroids are making me feel a little "jumpy"
We went to a fiber fair in Vienna, VA. People, farmers, were selling their roving and they yarn and weaving gear. There was a circle of spinning wheels in the center of the room being worked on by a bunch of folks who look like they know what they are doing.
 | ||
| I made this for myself in 1975 when I was 21. |
We have been to the bigger fiber fairs where there are barns and barns full of fiber/ yarn fare. But this was inside a community center, so it was big enough to see a great variety without getting worn out like we do at the big country fairs.
Of course, if I had a ton of money there are so many different yarns I would have bought. The hand spun alpaca wool. The hand painted lambs wool. The heavy Irish yarn to make an Irish sweater for Nick. It is all just such wonderful eye candy.
Here is a picture of Courtney wearing a long sweater I made for myself almost 40 years ago!
Today the weather was perfect. It got up to 70 degrees.
Oh yes, the exciting, almost tragic, non event of the day. There was a lock down at Dulles Town Center. There were reports of a gunman in the mall. Turns out, someone over heard a couple of women talking about shootings in malls and panicked and called the police. I am very happy that it turned out to be a non event!
Ok bed, here I come! Nite nite!
Friday, March 21, 2014
More doctor visits
This morning we met with our second neurosurgeon. He seemed to think that my vertigo was not caused by my tumor, that it was maybe the result of a virus, and that it night go away on it's own.
One interesting that I had not thought about was the possibility that even if I have surgery to remove my brain tumor, I might still have headaches. Hmm. Something to think about. The doc prescribed steroids to see if they would effect whatever it is that is causing my constant companion- the headache. I start them in the morning and will see how they work.
I didn't bother to mention to him that I had an appointment with an ENT (ear nose and throat) doctor in the afternoon.
The first order of business at the ENT doc was a hearing test. I didn't understand why, but went along with it.
After the test, the doctor came and examined me and talked about what's going on. She explained that if the vertigo were tumor related, it would have shown up on the hearing test by the way I responded to the sounds waves. Near as I could understand, if the vertigo was from the tumor, the sound would have made a different mark. Not a good explanation, but I feel like I understood when she explained it.
Next the ENT doc took me into another room to see if she could help make the vertigo go away. She had me lie on the exam table and turn my head- which made me very dizzy while the doc observed my eyes bouncing around in my head. Then she had me put my head in various positions while lying on my back, my side and while sitting. All the while she was holding a vibrator (yes a pink, 6" vibrator) behind my right ear. I told her that I had never used one in that way before!
Well, I guess it worked. The idea was to try to get the little loose "crystals" to go back where they belong- in the inner ear, and stop the dizziness.
I have not gone to bed yet to see if I will get dizzy. My hope is that I won't.
So I am on a watch and wait right now. I have an appointment to go back to neurosurgeon #2 in one month.
Meanwhile, totally unrelated, I have a weird bite or something under my left eye. It almost looks like I got punched in the eye, except it is pink, not black and blue. There is a tiny hard spot in the middle of the swelling. I was in the basement yesterday for the first time in ages and I think it might be a spider bite. Time will tell if it is going to get bigger or just go away.
Ok, enough for tonight. Bed time!
One interesting that I had not thought about was the possibility that even if I have surgery to remove my brain tumor, I might still have headaches. Hmm. Something to think about. The doc prescribed steroids to see if they would effect whatever it is that is causing my constant companion- the headache. I start them in the morning and will see how they work.
I didn't bother to mention to him that I had an appointment with an ENT (ear nose and throat) doctor in the afternoon.
The first order of business at the ENT doc was a hearing test. I didn't understand why, but went along with it.
After the test, the doctor came and examined me and talked about what's going on. She explained that if the vertigo were tumor related, it would have shown up on the hearing test by the way I responded to the sounds waves. Near as I could understand, if the vertigo was from the tumor, the sound would have made a different mark. Not a good explanation, but I feel like I understood when she explained it.
Next the ENT doc took me into another room to see if she could help make the vertigo go away. She had me lie on the exam table and turn my head- which made me very dizzy while the doc observed my eyes bouncing around in my head. Then she had me put my head in various positions while lying on my back, my side and while sitting. All the while she was holding a vibrator (yes a pink, 6" vibrator) behind my right ear. I told her that I had never used one in that way before!
Well, I guess it worked. The idea was to try to get the little loose "crystals" to go back where they belong- in the inner ear, and stop the dizziness.
I have not gone to bed yet to see if I will get dizzy. My hope is that I won't.
So I am on a watch and wait right now. I have an appointment to go back to neurosurgeon #2 in one month.
Meanwhile, totally unrelated, I have a weird bite or something under my left eye. It almost looks like I got punched in the eye, except it is pink, not black and blue. There is a tiny hard spot in the middle of the swelling. I was in the basement yesterday for the first time in ages and I think it might be a spider bite. Time will tell if it is going to get bigger or just go away.
Ok, enough for tonight. Bed time!
Wednesday, March 19, 2014
Almost two weeks
It's been almost two weeks since I found out I have a brain tumor- a meningioma to be more precise. Which means I have had a headache for more than that long. It is constant. Sometimes more intense than other times. Righ now it is pretty bad. I feel like I need to close my eyes so I can stand it. I am going to bed in a few minutes.
I have been pretty upfront and open about this. I have not been sad or too freaked out, just going along with it because it is what it is. I know I will be alright.
Then, this morning it hit me and for the first time, I cried about it. I am so tired of feeling like this. I want to go to the gym. I want to do anything at all. But I am in too much pain and I feel like just sitting and doing as little as I can is the best way to handle it. At least for me, For now.
So I had my little cry and felt better.
Spent a couple of hours at Starbucks, with "my" moms and babies. My head hurt, and I was not as involved and engaged as I usually am. But for those few hours, I was able to almost forget how much my head hurts. I was able to smile, and make some darling little ones smile back. I got to share in the happy news that one of the moms is pregnant with her second baby. I got to empathize with the moms who are going back to work soon, and hear them as they sounded out their plans for child care.
I wish I could do more. I do. But right now, I am doing enough I guess. I am thinking of all of the possibilities. Surgery? Medication? Radiation? Gama knife? So many things and I don't even know what the possibilities are or the choices right now.
I want my head to stop hurting. I want my energy back. I still have my joy, it is just taking a bit of a slow down and rest too.
I have been pretty upfront and open about this. I have not been sad or too freaked out, just going along with it because it is what it is. I know I will be alright.
Then, this morning it hit me and for the first time, I cried about it. I am so tired of feeling like this. I want to go to the gym. I want to do anything at all. But I am in too much pain and I feel like just sitting and doing as little as I can is the best way to handle it. At least for me, For now.
So I had my little cry and felt better.
Spent a couple of hours at Starbucks, with "my" moms and babies. My head hurt, and I was not as involved and engaged as I usually am. But for those few hours, I was able to almost forget how much my head hurts. I was able to smile, and make some darling little ones smile back. I got to share in the happy news that one of the moms is pregnant with her second baby. I got to empathize with the moms who are going back to work soon, and hear them as they sounded out their plans for child care.
I wish I could do more. I do. But right now, I am doing enough I guess. I am thinking of all of the possibilities. Surgery? Medication? Radiation? Gama knife? So many things and I don't even know what the possibilities are or the choices right now.
I want my head to stop hurting. I want my energy back. I still have my joy, it is just taking a bit of a slow down and rest too.
Monday, March 17, 2014
Snow
We got about 10" of snow for St Patrick's Day. Pretty unusual, but pretty none the less.
I woke up with a debilitation headache this morning. Had to hold the walls so I wouldn't fall down. I took some percocet, and it seems to have helped some.
The thinking at this point is that my vertigo is caused by rocks in my head. No, not really. But there is some sort of stone type thing that can become dislodged from the inner ear and cause vertigo. So I am seeing an ENT doctor on Thursday. That would be nice- it would be great to stop being dizzy all the time!
I need to lie down now for a while
Be Good
I woke up with a debilitation headache this morning. Had to hold the walls so I wouldn't fall down. I took some percocet, and it seems to have helped some.
The thinking at this point is that my vertigo is caused by rocks in my head. No, not really. But there is some sort of stone type thing that can become dislodged from the inner ear and cause vertigo. So I am seeing an ENT doctor on Thursday. That would be nice- it would be great to stop being dizzy all the time!
I need to lie down now for a while
Be Good
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