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New Year’s Goals revisited–January

How are you doing with your goals for the New Year?  I think I’m doing alright so far.  But it’s always easy to keep them up for the first month, it’s making them a permanent part of life that’s difficult.

Exercise:  I’ve managed to get a little exercise most days.  My goal has been to do a workout on the elliptical three days a week.  Some weeks its been more, and some less, but I’ve managed to get my lazy butt moving more.  I usually do a 30 minute resistance and pace program on the elliptical.  The program keeps my from getting bored and it’s more of a challenge in a shorter period of time.  The problem I have is when do I do the exercising.  I leave the house at 10 to 7 most days and don’t get home to close to 6.  So it can be hard to find the time and energy to workout.  I would love to get in the habit of waking up earlier and exercising first thing in the morning.  But that requires waking up at about 5:20 in the morning and I am not a morning person.  NOT a morning person (yes it needs repeating).  I’ve tried it and it went ok, just cannot see it being a regular thing.

Eating:  I’ve done ok with this.  Not perfect, but better than previously.  Less fast food and more vegetables.  I’m feeling pretty good about this.  I know I can do better, but I’ve got a good start.

Writing:  Although I haven’t blogged a ton, I have been writing in my paper journal more.  I don’t have a lot of time at the computer so I’ve found that actually sitting down with a pen and paper works best for me.  Then if I want to blog something, I just type it on up.

Crafting:  I’ve been trying to knit, at minimum, a line or two every week day.  Sometimes I cannot get it done or I just don’t feel like it.  But I have been doing it more.  I went with my sister for a scrapbook night once this month too.  I think it would be nice to make it a goal to try to go once a month.

New goal:  Take more pictures!  I had to actually dig my camera out from under a pile of crap to even attempt this!

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Another new year, another new post

I didn’t realize that it had been so long since I wrote in this blog.  I guess I am just not cut out for this blogging stuff.  But, let’s give it another shot, ok?

Goodbye 2009, you were the worst year of my life.  So many bad things happened; I wish I could erase you from my memories.  I hate sounding so negative all the time.  I do enjoy my life and the good times I have.  But there is no denying that the last year was a no good, horrible, awful year.

I haven’t written in a really long time.  The main thing is/was that things were so very horrible I did not want to dwell on them.  Or even think too much about everything that was happening.  I admit that I lost myself in all the horrible crap that happened in 2009.  I stopped doing a lot of the things that I enjoyed, I didn’t knit or crochet, hardly scrapbooked.  Pretty much the only thing I kept doing was reading and I continued doing that because I have always been able to lose myself in a good book.

November 2, 2009 after a horrible year of fighting against CNS Lymphoma my wonderful mother died.  I know I will never be the same.

mom's high school graduation picture

I don’t think I’m ready to put into words everything that I am feeling and all the emotions I am dealing with.  I would like to say that if anyone is dealing with Central Nervous System Lymphoma or knows someone who is affected by this disease, please, feel free to contact me.

2010 is going to be the year where I put myself and my happiness first.  2009 I spent so much time trying to take care of everyone else that I have forgotten to take care of myself.  This year I turn 30 and I would like to be physically, emotionally, and spiritually happier that I was in 2009.  I need to get back to caring for and about myself.  I need to eat healthier, exercise more, and sleep better.  I want to craft more.  I want to write more whether that is in a public forum or a private journal.  I don’t think of these things so much as New Year’s Resolutions, but as a new outlook on life.

mom and me 2006

More of the same.

My New Year resolution: “to better my life”. Vague, yes? It’s done on purpose. I just want my life to improve, in whatever way it can. Let’s just hope that 2009 is better in some way then 2008 was.

I have a few crafty projects to show off and of course the camera is currently down for the count. I have a new hat, scarf, and mostly completed vest. Oh, wait, it’s been so long since I took pictures of my projects, I also have a cowl and another hat too. I haven’t even been keeping up with my ravelry page.

I got a new baby nephew for Christmas. I call him Baby J. Because I don’t really care too much for his actual given name. Or I call him JC (for Jesus Christ and JC are his initials). He’s a pretty big guy (born at 9 lbs 9 ounces). He looks more like a 3 month old then a newborn.

Last time I wrote Mom was doing pretty well. I should have knocked on wood. The last chemo was really hard on mom. In December she spent half the month in the hospital. She spent a week in the hospital for the chemo. Then she was out less then 48 hours when she had a big seizure. It was scary as all hell. My dad came running to get me. We had to call 911 and they took her away on an ambulance. She wasn’t coming out of the seizure very well. Her vital statistics were crazy and she while she was opening her eyes; she just wasn’t “there”. So she spent her birthday and another week in the hospital. They decided that maybe her brain was still experiencing some swelling, or maybe it was the chemo, or the radiation, that caused the seizure. Because of the seizure the docs decided to put her on a much higher dosage of steroids and anti-seizure medicine. Well the steroids at high dosage actually deteriorate thigh muscles. The seizure meds have a side effect of loss of coordination. I am sure you can imagine the fun we have been having. Mom was having trouble walking and moving around already, and now things have gotten a hell of a lot worse. On top of these lovely effects, the steroids have been making mom’s blood sugar go crazy. We’ve now got the fun of insulin shots 4 times a day. Mom hasn’t had a chemo treatment since the beginning of Dec. because the doctors said she was too weak and wanted to give her some time to build up her strength (ha!). Last night I was woken up at a quarter to 4 because mom couldn’t get up. She was in the basement and had been sleeping on the couch and went to get up and just couldn’t. She crawled to the stairs and banged on the wall until I got up. Then I was able to get my dad to help her. It’s hard for me to admit, but I only weigh 100 pounds and mom weighs 50 pounds more, there are times when I just cannot help her. My dad was trying to help her up when he dropped her and knocked her head into the wall (today there is a bruise on the side of her face and lump on the back of her head). Luckily we woke my brother up and he’s a strong guy and was able to help as well.

I am not even going to go into the fun of Christmas and the stress that was. Let’s just say I got to do all the Christmas shopping for my parents, clean the entire house for 50 people to come over, and care for mom and my 1 year old niece (I had her while my sister was in the hospital giving birth to Baby J) at the same time.

I know, I am a whining complaining bitch. Ah well…

Central Nervous System Lymphoma

I’ve been meaning to do an update for quite awhile now, but just haven’t managed to get around to it. I’ve got crafts to show—finished baby blanket, baby hats, a vest in progress (nearly done), a couple of scrapbook pages and a stocking in the works.

Today, however, I wanted to do a more detailed update about my mom. My mom was diagnosed with Primary Central Nervous System Lymphoma at the end of September. When she was first diagnosed, it was beyond devastating. Of course the first thing I did was look online to find out more information about this cancer. I looked for statistics (wow is that a mistake), I looked for info about remission and info from people living with this disease or even surviving this disease. The medical information is all there. What was really missing was any personal info about this cancer. I couldn’t find any info about people living with this, surviving it, or even just a journal of someone’s experience of going through treatment. So I thought I would document my mom’s experience in the hopes that the info may be available for someone who needs it in the future. I should preface this by saying that I am not a doctor, nor do I play one on TV. The following is my version/understanding of my mom’s experiences, which may not be 100% accurate as I am only human.  I know its really long, but hopefully it will help someone if they are in a similar situation.

My mom’s CNS lymphoma is only located in her brain. And it is primary because she does not have cancer anywhere else, and it originated in her brain (rather then traveling to her brain from somewhere else in her body). She actually had 6 brain tumors, but only one was really big (5 cms). Her symptoms began with lack of appetite, loss of coordination, mental confusion, shaking hands, physical weakness, loss of personality/personality change, her handwriting changed and more. It was a decline over several months that completed baffled her doctors. First the doctors said it was Parkinson’s disease, essential tremors, stress. She had appointments with neurologists, psychiatrists, she had MRIs and acupuncture. It seemed that the doctor did just not understand how much my mom had actually changed. It was only after my dad wrote a letter to the doctor that included all the little events that had happened (like the fact that mom would dress herself in her clothes backwards and inside out and not notice) and included a sample of the handwriting change, that finally another MRI was ordered.

September 17, Mom went in for the MRI and was immediately admitted to the hospital. The doctors were very very concerned. At first the doctors did not definitively say that she had cancer. They tried to beat around the bush and say that it could be this or that. Then finally one doctor admitted that it was cancer. Mom was subject to a variety of different tests to find the cancer elsewhere in her body, but nothing was found. The doctors said they needed to do a biopsy to figure out the type of cancer. Mom was started on steroids to deal with the swelling in her brain and to help shrink the tumors.

Mom then was admitted to a specialist hospital (CINN), for the tumor biopsy. This was a hellish day for the family. We arrived at the hospital at 6 in the morning, as mom was supposed to go down to surgery at 6:30. She eventually was taken to surgery at like 8:30 as the time of the surgery had been changed and no one had bothered to inform the family (thanks a lot!). The surgery took about 5 hours (?), and then we had to wait a few days for the results of the biopsy to come in. The doctors also removed as much of the large tumor as they could safely do. During the interim days, mom was still in CINN and undergoing tests to determine what kind of therapy she would need. Mom was also really coming around in her personality. She was getting rather feisty and unhappy to be in the hospital. The doctors said with this kind of surgery/location of the tumor (not sure which one), that impulse control can be affected. Mom demonstrated this by ripping out all of her IVs and Dad came into the room to find her bleeding all over the place and ready to escape. Mom tried to escape the hospital several times during her stay. The therapists determined that mom would need physical and occupational therapy to regain the coordination and motor skills she had lost.

On the final day of mom’s stay in CINN, the biopsy results came back, Central Nervous System Lymphoma. The surgeon recommended mom stay on the steroid treatment and get gamma knife radiation on the tumors. This type of radiation specifically targets the tumors and does not radiate the rest of the brain. This is a huge bonus as whole brain radiation can cause dementia and other problems. The negative of this is that only the current tumors are targeted, so if there is an undetected spot of lymphoma, it will not be treated. So mom got this done. She then went home and started physical and occupational therapy 3-4 times per week. The doctors we talked with at CINN made it sound like this was all the treatment mom would need to fight her cancer: just steroids and gamma knife radiation. In fact, they didn’t even recommend seeing an oncologist. Sounds like a dream right? Yeah, total bullshit.

At a follow up to mom’s regular doctor, it was like “Oh shit! You haven’t been to an oncologist yet?!” So then began the oncologist visits. Several different ones were visited because their opinions/recommendations were so different then the people at CINN. The oncologists stressed that CNS Lymphoma is a very aggressive cancer, if the radiation did not kill the cancer it would spread very quickly in mom’s body. They stressed all the negatives of this cancer. They gave mom about a 45% chance. It was pounded into our heads how mom needed an immediate start with chemotherapy and that the cancer could have already spread (it had been about a month since mom went into the hospital for the first time). So another MRI, another spinal tap, and a bone marrow biopsy were preformed. Amazingly enough, the cancer had not spread! A course of therapy was then laid out.

Mom went in for her first round of chemo on Halloween. With the type of chemo (Methotrexate) mom is receiving she has to be admitted to the hospital during treatment. The chemo is given for a certain amount of time, then an anti-dote (Leucovorin) is given to flush the chemo out. The level of chemo in the blood is then monitored until it gets down to the “safe” level. After that, then mom can be released. This whole process is supposed to take about 3 days in the hospital. Mom’s first round took 5 days to get to a safe level as her body was just not metabolizing the chemo/anti-dote fast enough. Mom’s second round took her a whole week to get to a safe level. And that’s as far as I can say because mom is in the hospital starting round 3 today.

After the biopsy/tumor reduction, steroids, and radiation, mom really started to come back to herself. She became more aware of her surroundings and regained her personality. I will not lie and say she is 100% her old self, but she is close enough. Mom still has some memory problems at times, mostly short term stuff. She has remained physically weakened and her balance is off a bit. She was falling quite a bit during the months of October through the middle of November, so she couldn’t really be alone. The therapy helped her to regain some balance and strength, but therapy had to stop when chemo began. Mom’s regained enough use of her fingers that she begun knitting a bit!

Mom has been lucky so far with the chemo side effects (some of these might be caused by the steroids too), although mom has only had 2 rounds of chemo as of this writing. The worst thing so far has been that mom’s feet swelled up a whole bunch and she developed a rash. She got really dry skin and mouth. She hasn’t started losing her hair yet (half her head was shaved for the brain surgery, so she cut it all real short so it could grow in even). The main problem mom has with chemo is that she is incredibly bored being at the hospital! Mom does have really low levels of hemoglobin, so she may be receiving a blood transfusion today before they actually start the chemo.

I know the hardest part of this ordeal has been getting used to the idea that mom will not be around forever. I am realistic with myself. I know that this type of cancer is really bad to have, and life expectancy after diagnosis is pretty short even with treatment. I know that I may have a limited amount of time with mom, so I need to appreciate every moment I do have. I know time is limited, so I’m going to get as much time with her as I can now. Part of me is still going to hope and pray that mom will be cured and live to be a hundred, but the other part of me knows it’s not going to happen.

mom part 2.

It’s brain cancer.

Tonight there is a full body CAT scan to see if it is anywhere else in the body. Tomorrow there is a needle biopsy to determine the stage the cancer is in.

Mom

my mom is in the hospital. she’s been diagnosed with having multiple brain lesions. she’s being kept for more tests. they say the prognosis at this point is not good.

What to write?

When you write on a blog, do you write as if you are writing to an audience? Or do you write as if you writing in a journal to yourself? If you write as if you expect someone to be reading it, then do you sensor yourself? If I write as if I am writing in a journal, then I would be completely honest as I wouldn’t expect anyone else to every read this. Does it depend on the subject you are writing about? Does it depend on the number of regular comments you get? Or the page hits your blog receives? Having no comments does not mean that no one is reading…

These are things I’ve been contemplating lately. I’ve got some stuff I need to write about, to get off my chest. Things that are really painful, but I’m not sure whether it matters who reads it or who does not. I’m not sure if I would feel better knowing that someone read what I wrote and they sympathize.

So here goes. My mom has been very sick since about Easter. It actually started some time after Easter. It started with shaking in her hands, physical weakness, mental confusion. At first her doctor said it was stress and then maybe it is Parkinson’s disease, and she prescribed anti-depressants and anti-anxiety pills and sent her to a neurologist. First off, it is extremely wrong to give a potential Parkinson’s diagnosis without being seen by a neurologist first. Particularly wrong when you know our family history includes Parkinson’s. So of course my mom was totally freaked out thinking she had Parkinson’s. The neurologist decided she definitely does not have Parkinson’s and my mom was diagnosed with having Essential Tremors. That’s fine and should have been good news as Essential Tremors is a much better diagnosis with less long term effects.

But since then my mom’s health has gone on such a downward spiral. She started waking up in the morning not knowing where she was, she would put her clothes on inside out and backwards (when she could dress herself), she’s lost all sense of her personality, she is so physically weak she cannot do the most basic of tasks, she gets lost trying to go to work (we’ve lived in the same house for 30 years and she’s been working in the same place for 20 years), she makes comments about being a hotel, people moving who have not moved, people being left behind who are not there. She works for our family business, so she has continued to work even though she cannot really do anything in the office. If she worked for someone else she would have been fired or put onto disability.

The doctors at first kept brushing my father off, an was just not taking these issues seriously, just saying its stress . What kind of stress does someone have to be under that they forget where they live (when they have lived there 20 years)? Or how to dress themselves? Or how to start their car?

Finally my father wrote the doctors a long letter, detailing all these issues. All the daily confusions my mom has suffered. And this part of the illness has come on really fast over the last 2-3 weeks. Now the doctor has finally decided that maybe this isn’t an issue of stress, but she has said she basically has no idea what is wrong. This week they are doing more blood work, another MRI. If they cannot figure out what is wrong, my mom will be getting new doctors. Her current doctor is supposed to be consulting with some of her peers to try to figure this out.

I pray that they will find something. Anything. Its harder to not know, to wonder why this is happening. I would rather find out my mom has a brain tumor then to continue to not know as she continues to worsen. I would rather find out my mom has Alzheimer’s, then to not know.

So I pray that the tests will show something. Even if that something is a horrible something. At the rate she is currently degrading she will probably need to be placed in a nursing home before the end of the year. My mom will be 60 this year. This should not be happening.

My mom is really the glue that holds my family together. And now its all falling apart. We really need her around. We need her the way she was, the way she should be.

So I pray that the doctors will figure this out. They have to find something.