• Archives

  • Categories

  • Visitors

    • 2,327 hits

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.

An update.

So I thought I would post a little  update on my mom and on my knitting.  I swear, this is not going to be a blog only about my mom’s health.  I will continue to post my crafts (when I’ve got them).

So my mom has had a billion tests done on her.  Seriously there have been a mammogram, CAT scan of her full body, bone scan, 3 or 4 different MRI, EKG, EEG, and there are some I don’t even know the names of, not to mention the millions of blood tests.  What it comes down to is that there is no cancer anywhere else in her body (just in her brain).  This is good and bad. Good because obviously my mom doesn’t have cancer spread throughout her body.  Bad because this means they have to do the biopsy in her brain.  If there was cancer elsewhere, they would choose to do the biopsy somewhere else.  She has 3 tumors in her brain, 2 are rather small (not sure on the exact size), the biggest tumor is 5 cms/2 inches big.   Tomorrow she is having the biopsy done on the largest tumor and they are going to try and remove the tumor as well. After the tumor has been removed then they can do the biopsy and determine exactly what kind of cancer it is and what stage the cancer is in.  From there we will know the treatment options.  So far, they cannot really say what’s going to happen until the biopsy is complete.  They do know that they will probably use radiation to “zap” the smaller tumors (yes, that is the medical term the doctor actually used).  So far, the doctors have not talked about long term effects or survival rates.  So if you are the praying type, well we could use a little prayer here.

Everyone asks how I am, here is my response “I am doing the best I can”.   That’s all I can really do, right?

So here’s some knitting. Once again, knitting is really getting me through this rough time.  I finally started working on my nephew-to-be’s baby blanket.  I am going with the Ribbons Baby Blanket (ravelry link).  I have made this before and I thought it came out really cute, and was fairly fast to knit.  I am using Cotton-ease and size US 7 needles.  The colors were chosen because they were colors I had on hand (and I happened to like the color combo).  I think the colors make the blanket look kinda modern, not to babyish.  The blue is the “old” cotton-ease and the other colors are the “new” stuff.  I did have to buy more of the lighter color (stone) and more of the green (lime).  I am doing random sized stripes.  The blanket is flying off my needles.  I started on Sept. 11 and I am currently about 75% done (might be more, I need to try to stretch it out better).

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.

Do you ATC?

Do you ATC? An ATC are artist trading cards. A tiny piece of art that is 2.5″ by 3.5″ (that’s the same size as a standard playing card) that are meant to be traded and never sold. Those are pretty much the only rules. You can use anything to make your card: paper, paint, ink, stamps, stickers, ephemera, photos, fabric, ribbons, anything. On the back you put your name, title of the piece, and if its part of a series, then the series number. Craftster has a whole board of different people’s atcs. Some are for trade, some are not.

I tried to get into making them, and the few that I made I did like. But it took me so long to make one! I am the most indecisive crafter.

So here are the few that I created.

“Gone Baby Gone”. This was my first ATC. The image came from a book of old photographs. I used 4 different scraps of scrapbooking paper for the background. And then mulberry paper over the top right corner. I inked the edges with brown ink and stamped the words. The words are lyrics (sort of) from a violent femmes song (warning that’s a YouTube link)! The actual lyrics are gone daddy gone, but I liked mine better for this purpose.

After the first ATC, I did a limited series of 4 love quotes atcs. (That makes it sound way more fancy then it actually is).

“Where there is great love, there are always wishes.” I printed the quote on mulberry paper and used 2 different paper scraps for the background. I cut the hearts using my sizzix machine from 2 different red scraps of paper. I then used a crimping machine for the big heart. Add a little bit of inking to it, and bam! It’s done. Sorry the next one is a bit blurred.

“Love is an irresistible desire to be irresistibly desired.” Quote is again printed on mulberry paper. The flower is from a patterned paper. I cute a circle from different paper and used pop dots to make it pop out. I added some doily paper thing underneath the flower and inked the doily a little bit.

It’s kinda redundant to keep explaining these, so I’ll just post the photos of the last two.

“To love is to receive a glimpse of heaven”

“Sometimes the heart sees what is invisible to the eye.”

So, those are my only attempts at ATC’s to date. They are a great way to use up little bits and pieces. And god knows, I am not one to throw out a tiny piece of paper that maybe, one day, eventually, I might just want to use. I may try again someday. I think I will try again someday. It’s a fun little process, I do love playing with paper. I don’t really have a purpose for these. I have not tried to trade them. I just kinda have them stored away. Maybe I should make a whole bunch and display them?

If you make ATCs, what do you do with them? Do you trade them? Do you become attached to yours and cannot let them go?

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.

Knitting Notebook

I made this notebook for a swap on Craftster quite awhile ago. I think it was a swap for a project bag and yarn and needles. That kind of thing. I made this notebook from scratch using a bind it all machine that my mom bought me for my birthday. This was last year? It was rather fiddly to make. Kinda tough to keep everything lined up nicely. The front and back are made from chipboard. Did you know that chipboard is super cheap at an art supply store? And it’s a big piece–poster board sized! I decorated the front with Knit, which I cut using my Sizzix machine and of course scrapbook paper.

Inside I included a needle conversion chart and a knitting abbreviation list.

The remaining of the pages were different versions of project pages. With spots for the pattern, who it was made for, size, source, yarn, needles, gauge, and and notes. I made several versions of the inside pages with different graphics on them.

The back of the book was decorated with a striped paper. I included a ribbon so that the book could be tied shut so it would not open in a knitting bag.

I thought the whole thing came out very well for my first attempt. I don’t recall my partner really thanking me much for it. But I was happy with the turnout. It took quite awhile to design and print out all the different pages and line everything up. It proved to me how I am definitely not a graphic artist. I like it enough that one day I may take the time and make one for myself!