Things to remember

I keep thinking about things I should hold on to, you know, trinkets 'to remember' her by. We're not really an heirloom type of family. I don't think there's anything really old or special that's been passed down amongst us. At first, when I thought about that it made me a bit sad. When I considered it more I started to ask myself what kind of thing I would want to have passed down to me and I came up with nothing. I got to thinking about how shallow an heirloom is and how many things, tangible things, I have already in my possession that were passed to me from my mother.

I will never mix a cake batter or pull a sheet of cookies from the oven without thinking of her. I hear her telling me how to measure flour (with a spoon and butter knife) every time I bake anything. Baking is one of my favorite things to do, and that joy is directly related to hours spent helping my mom in the kitchen.

I wish I'd learned sooner, but mom taught me to sew last year and I've loved it ever since. I know I'll never thread a bobbin or cut a pattern without her in my head.

These hobbies are shallow things too compared to the multitude of other lessons I learned from my mom. How to love. How to be compassionate. How to be selfless for the good of the people you love most. Good humor in the face of sorrow and adversity. If my mom wasn't who she is I know that I wouldn't have the skills or strength to get through this grief. And I know that I will pass those same gifts to the people I love. So I guess that's our family's heirloom... the lessons we learn from each other. Pass that down.

Unreal

I sleep too much. It's really a problem. I've slept 12-15 hours at a stretch pretty much every night this week... and last. Yes, I'm unemployed and that allows me to catch as many z's as I want to, but who wants to sleep 15 hours straight? It's causing me some serious physical discomfort. My jaw hurts more than usual and my ribs always feel bruised. I'm pretty sure those things are both caused by spending too many hours laying down in bed. When I say "at a stretch" I mean all at once, but I do wake up during those hours. The last 3-5 of those hours aren't great sleep and are interrupted with many opportunities to wake up... but I don't... I keep sleeping. As bad as the sleep may be, and as ready as my body might be to wake up, my head just isn't in it. My brain isn't ready for another day of this unreal heap of bullshit.. so I sleep, and sleep and sleep until I am so phsically uncomfortable that I absolutely can't fall asleep again. I feel like this is the first crack in the wall. My big toe dipped into the downward spiral of... well... losing my mind.
I miss my mom. I miss her how she was. I miss the assumption that she'd pretty much always be there. I miss her being the strong one. I miss her giving me crap all the time. I feel like she lost so much while we weren't looking. Gone are the days of picking up and just going shopping with her, or spending an long afternoon at Cory and Kerrie's house. Not just gone, but gone forever. No more Christmas cookies or Thanksgiving meals prepared with my mom in the kitchen. Last December, a mere 9 months ago, my mom helped me finish a queen sized quilt for Grandma. This involved hours of sitting and squatting and crawling around on the hard floor tacking the quilt pieces together by hand. This will be the last craft my mom will ever help me with. And less than a year later she can hardly get to the bathroom on her own.
Honestly though, the worst part of my day is when I'm reminded that she's in there still. The same fiesty, energetic, amazing woman is still in her wreck of a body. Would it be worse if she were also losing her mind? Maybe not. Ignorance is bliss right? But she's just got to sit there in her ever weakening body and... live. I don't want my mom to die, but I especially don't want my mom to suffer. I sleep 15 hours because when I'm awake I'm contemplating what it's like inside her head. She's lost pretty much EVERYTHING to this disease and when I put aside my own grief and consider hers it squeezes the breath out of me. She acts strong and she says she's more worried about everyone but herself, but it's got to be so terrifying and so.... fucking SAD.

I don't want my mom to die.

It's been a while

I guess I feel like I have to have something really interesting or heartfelt to say now that I know people are reading this. It was easier to write for writing's sake when this thing was unpublished/unread. I should be able to write and pretend that no one will ever read it, but I can't.

I've been keeping my head above water... mostly. This diagnosis has been a long time coming and the path has been so terrible that it's only in hindsight that I can see how everything has changed. From now on everything is going to be "before my mom got sick" and "after my mom got sick." My whole life will be divided into those two categories from now on and I'm heartbroken when I think of the future I've lost. I miss that future. I miss the assumption that I'd watch my mom grow old. I miss not thinking about all the years I will have to face without her.

It feels like my old life, the one where mom was healthy and invincible, was a dream. That reality is so far gone now that I have a hard time remembering what it was like. It's hard adjusting to being this person...this person who spends every waking hour seeking out distraction... this person who is watching her mom die.

This policy of distraction seems to work for me. It's allowed me to function and live my life without breaking down at inappropriate moments. It allows me to enjoy my time with mom and not constantly obsess over that someday when she won't be here anymore. It's almost like being normal again, it's just a more shitty normal.

In the news:

-Mom isn't eligible for participation in the NP-001 trial because she's been taking sterroids. She is off of them now, but she has to be off of them for 12 weeks to qualify

-Mom isn't eligible for the Creatine-Tomoxafin trial because she is on Coumadin for her clots.

-The Dexpramipexole trial is full and they yanked enrollment last Tuesday. I'm a little miffed that I've been trying to contact the woman about the trial since early July and she's gets back to me a week after enrollment is closed.

-No other trials are being held in our area. I will be on top of anything that comes up.

-We have reached 75% of our $5K on Operation Kay!

- Mom got a lift recliner for $100 on craigslist. Kathleen doesn't have to lift her out of the chaiz lounge anymore, this chair lifts her into a nearly standing position.

Good News

I got a call from the nurse who is supervising the NP-001 trials in Centralia this morning. She is starting the process of getting mom involved in the trial through their ALS tratment center! She will be contacting mom's neurologist at UW to confirm her diagnosis and get her patient information. We will (eventually) go to their facility to meet everyone and sign the piles of paperwork that I imagine goes with an unverified drug in the trial phase. If we're ok with the paperwork she'll have a physical and go through testing to ensure she is fit for the study. Then we're off. Keeping hopeful that we will qualify and she will get the real drug. She has a 2/3 chance of getting at least low dose drug over the placebo.

Quickie

Went to see Dr Kramm with mom yesterday. She's a great doctor and was very sweet and attentive. She answered all of my questions and ok'd the supplements I've heard can help mom. We'll be starting B-12, CoQ10 and Vitamin E. The folks over at ALS Forums have recommended these to me, so it's worth a try.

Still no word from Dr Goslin ar Dr Brown. I'll be making additional calls tomorrow.

No alarms and no surprises

A pretty recent picture of mom over at Cory and Kerrie's house.

Fundraising is amazing. If you ever want proof that there is a tiny bit of light left in this world, asking for help will do it. I am amazed, but not surprised, at the response and love I am seeing. It's beautiful.
I'm having a moment of doubt... of fear. I believe that we have a chance to save my mom even though the odds are stacked. I can't believe anything else and still make it out of bed every day. I have to grasp these tiny shreds of hope or.... well, I'd be wrecked and no help to anyone. But I have my doubts and I stumble back into despair. The worst thing that could possibly happen to me is happening, so it becomes easy to feel like the fates have aimed their ray gun of suck at me and will just continue to pile the shit on.
What if she doesn't get into this trial for one reason or another? What if she doesn't get the real drug and gets 6 months of placebo? Meanwhile we are unable to explore other treatments because she is involved in this study and is getting nowhere on the placebo.
I feel a bit like I'm running in place. I am impatient. I need to feel forward movement. Time isn't something we have the luxury of wasting anymore. It has only been a few weeks but I feel so urgent about everything. We need to be going to Portland for the trials like last week! I know I'll feel better when I hear back from Dr Goslin at Providence ALS Center about this NP-001 trial. It can't come soon enough.

Family

Well, the cat is out of the bag. My grandma just called and it looks like my mom just broke the news to everyone. I know that means my mom is at home having a rough time and I'm really not looking forward to getting off work. I want to be there for her, but this just really sucks. My aunts are beside themselves. My grandma is facing every parents worst nightmare. I know this part is the hardest for my mom. She has guilt over the fact that her sickness is causing so much pain for her loved ones. I hope my aunt Kim keeps herself together. She's always been really close to my mom and I know this is going to be a long and terrible road for her (for all of us).
When the phone rang I was really hoping it was Dr Goslin from Providence ALS Center in Prtland calling me back about the NP-001 trial. I hope she calls soon so we can get this ball rolling. I know I'll feel better when we're doing something and I think my family will feel it too.

What the fucking fuck?!?!

So I get in the car yesterday and Kathleen tells me the neuro called and the recent blood tests showed the antibody that indicates Myasthenia gravis. Well... that's pretty great compared to ALS, right? So for the last 24 hours I've been floating along, believing that my mom is going to be somewhat sick, but will have a normal lifespan and not end up paralyzed. It was an awesome feeling.... thinking about all the futures where she feels better and gets on her feet again. Then BOOM... her second EMG proved that it isn't MG but is, in fact, ALS.... ALS confirmed. Fuck fuck fuck fuck fuck fuck fuck....
While it's not as hard as the initial blow because I have remained guarded when it comes to "it could be this" after 3-4 progressively shittier possible diagnosis', it still takes the wind out of me to have what I thought was a little good news turn around and punch me in the guts. I'm still inclined toward 'take me with you because I can't hack it alone." For Julia.... I'm not going to off myself, don't worry. It's just where my head goes when things get too tough to imagine bearing.
I'm still going to continue looking for every possible treatment that will help my mom keep her sanity and strength for as long as I can manage it. I am going to push her into any trials and treatments that have promise. I just need her to stick with me and not give up. I know she'll tell me when she's had enough, but hopefully something will click and we'll find that miracle.
She has guilt over being sick and that makes me have guilt over her being sick which makes her have guilt over being sick.... it's a sick cycle. I'm trying to keep it together for her benefit, so she doesn't feel bad for something she has no control over, but I'm dying inside. I can't handle a world without her in it.

Sucky, but less so

I decided to just go ahead and go through the symptom checker on WebMD, which I've avoided doing because it always gives a ridiculous list of possible diseases. The thing that stands out the most is that muscle twitching/spasms absolutely has to be one of the listed symptoms to get them to spit out ALS as a possibility. It seems like that is a the common denominator for a solid ALS answer and mom has had no twitching, spasms or uncontrolled movement.
I entered all of her general symptoms (weakness in the limbs and diaphragm, problems with speech, breathing and eating, thick saliva/difficulty swallowing, muscle wasting, etc) and it came up with a few things that sound possible:
1.Myasthenia gravis - this is still a huge pile of suck, but more treatable than ALS/MND
2. MS - still super suck, but again, not as sucky as ALS
3. Our old friend Lyme disease still showed up even though I didn't list rash or other typical Lyme symptoms. Please let it be Lyme!

Options and Opinions

I'm still looking at anything I can get on helping to protect and rebuild mom's nerves. Since her doctor isn't entirely sure about the ALS diagnosis, but is sure she is losing muscle due to a neurological disease I am focusing on supplements, nutrition and possible medications to stop the deterioration. I've joined the ALS forums to try to get advice, answers and opinions on different treatments. The general opinion on the forum is that the trip to China is a bust. Since there is no clinical proof that the stem-cell treatment works and since the doctor who performs the treatment can't explain how or why it works, people are understandably skeptical. I'm not closing that door just yet, but I'm exploring less expensive, less distant options.
I've learned through one of the Kindle books I bought and from various ALS forum members that taking B-12 (sometimes b-12 deficiency can have dire effects on the nervous system, including ALS type symptoms) and CoQ10 can help to slow nerve damage/ALS progression as well/better than the one drug approved for ALS. this drug shows only moderate slowing of symptoms (3 months) which isn't very promising.
There are many more drug trials currently recruiting, but most are out of state. There's one in California and almost all the trials are out of Emry in Atlanta. While I'd love to visit Atlanta, I don't know if mom is up for long term traveling for unverified results. I'd hate to tax her already low stores of energy just to get the placebo or have her react badly to the medication(s).
So, mom is going to be asking her doc for a Lyme disease test this week and also asking her to test her vitamin B levels. If we get the ok from the doc we will start her on a supplement regimen to try to help her get back on her feet again.

On the happy end of things; Brandon and Grandma came to visit over the last 4 days. Mom seems to be doing better than she has been in a while. I'm not sure if the family love is helping or if it's that she's almost off the steroids. She's down to a very low dose and she seems to get better and better as the dose gets lower and lower. Isn't it strange that she would have the opposite reaction than is intended with steroids? Looking back it does seem like she got a lot worse after the high dose steroid infusions and continued steroid pills. I'm hoping she will only continue to improve as she comes completely off the roids.

Bad dream

I almost never remember my dreams. Every once in a while I have dreams between snoozes on the alarm clock, and I remember them briefly. This morning I had one of those between snooze dreams, but it hasn't faded like the other ones....
Kathleen was taking me home to pick up Dude, which she's done on tons of occasions. I'm walking into the house and when I get there I can't find Dude. I'm calling him and shaking his food bag, nothing. I round a corner and see him laying there lifeless. He's wasted away to nothing in a few short hours while I was away. I assume he's dead because he doesn't move when I approach. I just keep saying "Oh no. Oh no. OH NO!" I pick him up and he's clammy and cold but he whines so I start trying to run. You know that bit, running just makes you slower and hysterical. I get him to the car and we take him to the vet.... then my alarm goes off saving me from this shitty dream.
Way to be subtle Subconscious.

A reply from Doug

I emailed one of the patients who has had the stem-cell transplant in China. Their website listed emails and phone numbers for many of the patients, which I think is great. I emailed an American man named Doug and asked him if, after having the procedure and after having his symptoms start to come back, he still found the cost and the trip to be worth it. I want to make sure I'm not asking for charity if I'm going to waste people's money on some scam. This was the response I got from Doug:

Hi Valoree,

I am sorry to hear that your mother has ALS. You are right, the U.S. medical experts have little to no answer for als.

I have traveled to Beijing 5 times and have had the procedures 4 times.

Yes, I do think the trip and expense is worth it. Of course, it depends on your mothers condition prior to the trip because the trip takes a lot out of you and takes several days to recover.

No, the procedures are not all that bad. The procedure where they drill two holes in the skull is like going the dentist.

I had good results from each trip. Understand that is not a cure. It merely slows or stops the progression and buys time and hope. Hope is the only real thing that we have.

The expense is well worth it. You can not put a $ sign to hope and slowing it down.

If I can help, let me know. Use my name if you contact Dr. Huang. By the way, the staff is very caring.

Link Chasing and Drug Trials

I've spent most of today following one link to another to another. I've hopped through message boards, family support group sites, angry reviews and much more. I bought two books for my Kindle. One is a memoir of a person who had ALS and another is about nutrition and supplements that might help with ALS. There's another book I'd like to read, another memoir, but it's expensive for the Kindle and I'm broke until I'm through with this moving to a new apartment business. I've signed up for a fund raising website in hopes of getting some funds for the possibility of going to China. I've searched high and low to find out what other ALS doctors and patients say about this procedure. Is it a scam? Am I wasting my time and energy on something totally ridiculous? Is it worth the trip and the money? I'm still unsure, but the picture is becoming a little clearer.
there are so many questions and for every question there are a hundred different answers, but I'm working my way through the maze. The take-aways for today are:
1. It could be Lyme Disease - ALS and Lyme present with some similar symptoms. Both can cause facial paralysis, muscle weakness and moodiness. The ALS forums have Lyme disease info all over the place and a ton of posts about ALS diagnosis turning out to be Lyme. this leaves me feeling cautiously hopeful and a little bit pissed. How great would it be if this could all be cured/treated with antibiotics? But I try not to get my hopes up over a long shot. It could be Lyme, but until I can convince her to get her doctors to test for it and the tests come back positive, I am not setting my heart on it. I'm pissed that her doctors haven't tested her already. I know I'm not a doctor, but you'd think they'd jump on a Lyme test before delivering the crushing blow of ALS. If you search "ALS and Lyme disease" the results are insane, so you'd think a doctor would know this and I wouldn't have to be the one to bring it up.
2. There are 2 (maybe more) drugs in the trial phase that are showing promise in arresting the progression of ALS and possibly restoring some function/strength back to the sufferer. I have emailed the UW about possibly getting on board for the 3rd phase trials for one of these drugs. If she qualifies and the drug makes it through phase 3 she will automatically get to take it while it goes through FDA approval (which can take a very long time) and skipping the FDA approval gap can mean keeping her ability to speak/eat/walk.
3. There are stem cell researchers who are offering experimental treatments/transplants in the US. It's a slim chance, but I'm definitely going to reach out to whoever I can to get help and to stay hopeful.
4. ALS fucking sucks.

China?

Mom had her swallowing test yesterday. It's not good. They fed her stuff and watched it try to go down her throat. They can see her muscles NOT working to move the food and drink to her stomach. This puts her at risk for pneumonia. They said things like "WHEN you get pneumonia they'll probably want to put in a feeding tube permanently." and "WHEN you can no longer speak they have machines that can speak for you." FUCK! Because of Stephen Hawking and my Google abilities I know that ALS causes severe muscle weakness and eventually... paralysis, but I'm stil not prepared for this. I well up thinking about looking into my mother's eyes and seeing her in there but not being able to hear her voice.
So today, after sleeping little and crying tons I came into work with a mission that had nothing to do with working. I was going to use my Google abilities and some good old fashioned desperation to see if anything is out there... any hope at all. I came away from my search with a small hope and a huge hatred for this country and the conservative assholes who have, in part, sentenced my mother to death. The answer to her ailment and to that of hundreds of thousands of others is.... stem cells. In China there is a neurologist who has been researching and testing stem cell transplants on people with neurological disease and injury. It's expensive. It's not a cure, just a postponement of the inevitable, but it's something. It's more than any US doctor would or could offer. And why China? Why not here? Because of the fucking pro-lifers. Yes, they use fetal cells for transplants. Yes, those cells come from abortions. No, I don't give a flying fuck about unborn babies. It's funny, the same flag waving idiots who shout "take care of our own before we give money to other countries!" also say "screw the living, save the unborn!" It's so incredibly backwards. By their own logic we should be worried about the people already living and dying and suffering.
If I bought into the whole 5 stages of grief I would assume I'd just entered the "blind rage" stage. I fucking hate this place. I hate. HATE! Pretty much everyone in existence is an asshole or an idiot or both. The one person I think has shit right is sick and dying and her health and future is being shit on by these religious fanatics that have hi-jacked our fucking planet. So now I'm sitting here thinking about how to raise $30K to get her to China and get her treated with abortion cells.
The treatment is far fetched. The case studies they have posted on their site show mild improvements in muscle strength and speech. They show that without additional treatments the patients eventually begin to lose muscle again. The answer... do this shit in America so we don't have to go to fucking Beijing to get proper treatment.
It's not a cure. I keep telling myself that, but I feel better today than I have in a long time. It's something to hold on to. How on earth I will ever be able to raise that kind of money is beyond me, but I'm sure as shit going to try. Even if it buys only months of mobility for my mom it would be worth every penny.

ugh

There is an oft-asked question by the theist: how do atheists deal with death? The answer is that we bravely acknowledge that death is just as much a part of life as living. We gratefully remember our loved ones and work to be the type of person they would be proud of in life, and even prouder of in the fullness of our lives. We hug our loved ones that remain and let those who have passed live on in our actions and conscience so that their lasting influence can continue to improve us.

And we cry.

I found this passage while searching for support groups and grief counseling for atheists. It's hard to come by. Most people turn to God and prayer for support during a crisis, but an atheist stands on their own two feet while life kicks the shit out them. I have to admit, this whole thing would be so much easier if I believed in the great big malt shop in the sky. If I could truly believe that everyone we love is waiting in some fluffy white paradise it might be easier to lose the best person in my world. But I don't and I can't.

The long story

A little more than a week after that shitty diagnosis and it's been a roller coaster. They tell me she's got a terminal illness and I don't know where I went, but my head just spun. I think the first words i was able to speak were, "I just want to go with you." I know that's not what my mom wants to hear, but it's there. It's not like I feel like life isn't worth living without her, but it's going to be SO damn hard. I can say that, but the gravity of actually losing my mom is still lost on me. There's a barrier somewhere inside that won't let the truth actually sink into my core. I don't know.... this really really sucks. It's been hard to carry on with normal day to day stuff. Everything is so wrong inside of me that it seems cruel that the world just keeps spinning. Seattle has seen it's warmest and sunniest days so far this year and I just want it to rain all the time.
Thursday, the night I got the news, I stayed over at the moms to avoid myself for a while. I slept terribly and stayed home from work on Friday. Friday morning was as normal as can be expected. Watched Netflix movies and just hung out with mom. She developed a pain in her lower right side that she assumed was gas and went to lay down. The pain got worse and became unbearable so she agreed to let us call an ambulance since the pain was too much for her to walk to the car. She was taken to the hospital and over the next few hours it was discovered that the pain was due to blood clots in BOTH lungs and some in her leg. FUCK! I took the doctors' lead and took this news with ease.
They seemed to be sure of their ability to treat her clots and get her out of the hospital. When the doctor came by and started talking about her treatment and how it would be affected by her ALS diagnosis the pity was palpable. The night nurse was super sweet and she pulled me aside and expressed her deepest sympathies about the turn of events and the ALS curse we've been strapped with. It was nice of her, but the sympathy just makes me feel hopeless about things.
I've mostly resisted the impulse to go on a Google rampage and read everything available about this shitty disease. I don't want to see it in black and white. I don't want to read about how my mom is slowly going to lose control over her body. How she will end up paralyzed and mostly unable to speak. How there's absolutely no treatment to slow or stop progression. How the average number of years from diagnosis to death is 5. Five years is just not eno0ugh.
As scared as I am of losing my mom I am even more scared for her. I am terrified of the day she can no longer walk. I am terrified of watching her fall apart. She's always been so strong. So lively. So young. And now I've watched her go from vibrant 50 year old woman who looks great for her age to sickly, weak 50 year old woman who looks 70. In less than a year she's aged 20. ugh!
So, the doctors and nurses patched her right up and we were out of the hospital after only 2 nights. She has recovered amazingly fast and I am cautiously optimistic. If she is strong enough to recover from a double pulmonary embolism in record time then maybe she's not as far gone as we think.
The day after she was released she was in to get her full biopsy results. Her neurologist isn't entirely convinced it's ALS, but he is sure it's a neuro-muscular disease and none of those are good news. Fuck fuck fuck.

The cold, unfeeling, factual journey from WTF to… well… WTF some more

A year ago: Moms fingers start going cold and turning blue. They are painful and super sensitive to heat and cold. She sees a doctor who tells her it’s Reynaud’s which is a vascular issue that constricts blood flow to the fingers and toes causing what looks and feels like frostbite.

About 6 months ago: The Reynaud’s shows no improvement and mom starts feeling tired all the time. She has slight back pain and sees her doctor a handful of times for various issues. He gives her meds to treat her symptoms but offers no help in actually diagnosing or treating whatever it is that’s causing the symptoms. Mom seeks out a naturopath who puts her on an exclusion diet to test for food allergy. Mom eats nothing but cabbage, rice, beans and millet cereal for almost a month but feels almost no improvement in her condition. She loses about 30 pounds and gets weaker and more lethargic. She starts eating normally again and notices no change so we assume she has no food allergy.

About 4 months ago: Mom is still losing weight even after resuming a normal diet. She tires after small tasks and still has no idea what is wrong with her. She starts looking for a new doctor and finds Dr. Upton.

About 3 months ago: Dr. Upton thinks mom has some sort of auto-immune disorder but tests are inconclusive. She is referred to a gastroenterologist who thinks she might have scleroderma. She is referred to an awesome rheumatologist who says, yes, she has scleroderma and possibly polymyositis. Neither of those things are good, both are painful and super shitty things to have, but they are treatable. More tests and a referral to a neurologist who sticks needles in her muscles and then electrocutes them. By now mom is super weak and unable to perform basic tasks. The neurologist sets up a muscle biopsy surgery to try to pin this thing down. Mom is taking steroids to help stop muscle atrophy which is happening fast and is also put on an immuno-suppressant and antibiotics to prevent pneumonia since her breathing test showed she is only at 58% lung capacity due to muscle weakness. Blood tests show nothing but normalcy.

3 weeks ago: Muscle biopsy is performed and the surgery is complication free with a pretty mild recovery. Mom is getting weaker by the day. She is winded after showers where she is sometimes unable to wash her own hair. She weighs 130 pounds now and for her that is not a healthy weight. She looks even thinner than that. Her neck is bowing and she has a hard time holding up her own head at length. She’s starting to stoop when she walks. She’s 50 and she looks 80. Her skin is sagging from rapid weight loss. Her speech is sometimes hard to understand because she has weakness in her lips and jaw. She can no longer go to work and is applying for disability. She gets a handicapped parking permit. She is 50.

June 30^th, 2011: I am asked to sit next to my mom and I know it’s no good. They tell me her biopsy shows signs of ALS which is a terminal neuromuscular disease. There is no treatment. No cure. This is where I begin…the diagnosis…the disbelief…the grief.