For three-and-a-half years, I said “no”. No volunteering, no Class Mother position, no field-trip chaperoning, no personal projects, minimal cooking, no homemade Christmas presents. I’ve focused on the four people and two pets in the little brown house, and on holding myself together enough for my kids to keep speaking to me and my husband to be able to hold most of the weight of running the household.

Fast-forward to December, 2009. Finally feeling like a human being again, like my brain is firing on all cylinders. Able to keep track of the location of my sunglasses while simultaneously talking on the phone and switching the wet laundry to the dryer, I am getting a little full of myself. So I start saying “yes” – yes, I’d love to edit the school newsletter. Yes, I’d love to bring in a dish to contribute to the second grade’s Country of Origin feast three days before Christmas. Yes, I’d be happy to give the neighbor a ride home from the hospital on a Wednesday night after a support-group meeting and a whirlwind trip to a very crowded Target. Yes, I’d love to make six pounds of spiced walnuts to give as gifts to the teachers and service personnel in our lives. Why sure, I’d love to go to a fundraising dinner on December 17. In formalwear. The evening after a chemo treatment.

And thus a few of the juggled balls have hit the deck. Had to pass off the newsletter to the previous editor because my software skills were exceeded by the amount of work that needed doing. Failed to check with my seven-year-old on the due date of his research project and had to pull him out of bed at 7:50 on a school night to help him finish it. Got all the stuff I needed at Target and the neighbor home from the hospital but then blew parking my land barge in my teeny garage and dented the fender on the support column. Remembered to buy a present for the birthday party but forgot to make a playdate for the other kid for the same afternoon. Made it to the fancy party but blew off my boys all afternoon because I had so much to do before the sitter came that I couldn’t take ten minutes to read a book. Haven’t had time to call my dad back from a call he made to me three weeks ago.

Now I’m realizing that perhaps I’ve bitten off a little more than I can chew. Remembering that even before I got sick, I was maybe not the best multi-tasker on the planet (raging hyperbole). Remembering that this mom thing leaves little room for personal activities and ambitions, and that getting to the gym four times a week might be the pinnacle of my independent activity. Realizing that in my rush to fulfill what I though of as my neglected community obligations I had to put my homefront responsibilities on the back burner.

So I’m making no one happy right now. Family resents the fact that I’m busy. Kids are calling me a grouch. Dog hasn’t been on a real walk in four days. Laundry piling up, dust bunnies multiplying. Christmas spirit cowering in the back of a closet. Wherever I’m focusing, I’m feeling guilty that I’m not working on something else. And I’m afraid that this isn’t going to change as I get healthier; this is the standard modern mom’s dilemma. Crap.

The first thing to do is spend the day with my family NOT stressing about the projects that haven’t gotten done yet. The second thing to do is trim the fat from my obligations list. Or maybe I’ll leave that for the New Year – I really need to finish the Christmas cards. Okay, start the Christmas cards. And call my dad.

Getting older is tough enough.  Watching your body change as you get older is a gradual process.  A gray hair here, a gray hair there.  A wrinkle here, a wrinkle there.  As the days move forward, at least you know everyone else is in the same boat.

But getting older with an autoimmune disease, in my opinion, is far more difficult.  You plunge head first into a scary world, and you imagine this must be what it feels like to be 90.  Losing abilities, taking pills daily, watching your body change at a very fast rate can be not only frustrating and painful, but detrimental to your mental health.  Each day is different.  You might notice new rashes on your skin, new bumps or bruises, or another task left uncompleted because of lost ability or weakness.  I remember clumps of hair falling out in the shower.  I felt sort of like a cancer patient.  The kinds of things you go through are just not meant for daily conversations.  So you feel alone and trapped in your own skin.

Luckily however, I have been able to get my Rheumatoid Arthritis under control with alternative medications that don’t have side effects.  My hair no longer falls out in clumps.  I rarely get new bumps or rashes.  And I am able and agile enough to once again live a full and productive life.

But that’s not why I’m writing this post.  This post is about the unknown and that gripping fear that although everything seems ok at the moment, the likelihood that more problems are in your future, especially as you grow older, is likely to occur.  And don’t say that I’m living life with a glass half-empty.  I am optimistic that whatever arises, I’ll be able to handle and possibly even get control of by taking more supplements.  But my point is, is that it is likely that if you get one autoimmune disease, there may be more to follow.

My first autoimmune disease was a skin disease.  It’s located on my shins and called Necrobiosis Lipoidica.  At first I was told it was Granuloma Annulare and the doctor showed me a picture of a woman with it all over her body.  This conclusion of course, was horrifying to me because for the next five years, I worried I’d be covered with shiny, scaly scars.  Fortunately, the doctor was wrong and instead, I was diagnosed later with Necrobiosis Lipoidica, which is a skin disease that only affects the shins.  Both skin diseases usually accompany diabetes, so the doctor was confused why not only did I not have diabetes, but it did not run in my family.  Later, in my research of Rheumatoid Arthritis, I learned that Necrobiosis Lipoidica sometimes is associated with RA.  Around those same years that I developed this, I also got pleurisy, which is a painful inflammation of the lining between your lungs and your ribs.  Antibiotics seemed to clear it up and it was probably a result of living in such polluted air.  Pleurisy, however,  is a frequent symptom of Lupus and it sometimes accompanies RA.  Fast forward four years and I’m diagnosed with Hypothyroidism.  My gynecologist caught it, otherwise this would have probably gone on for years without me realizing.  Then seven years later I was diagnosed with RA.

The reality is, most people with an autoimmune disease like RA or Lupus, usually have many more autoimmune diseases.  It can be a ripple effect.  Whether it’s the diseases themselves, the lifestyles that accompany the diseases, or the medications, more and more seem to pile up.  I’m glad to be on alternative medications because I know I’m taking things that might just possibly reverse the disease process.  But there’s always that side of me, that terrified side, like a voice in the back of my head that says, “What’s next?”  This time at least, I know that I’m doing all that I can do.  I’m armed with knowledge.  I’m taking supplements that improve my health.  I’m eating better, sleeping more and consuming fewer toxins.  There’s nothing more that we can do besides enjoy every day for what it is, knowing life is uncertain, so whatever each day may bring, let it be the best that it can be.

Winter cloud formation

Four nights ago, winds buffeted the house.  Chimes, hanging from the eaves, rang like instruments in a Balinese Gamelan and disturbed my sleep.

At first light I ventured outside. There, I retrieved our empty garbage can, which the wind had blown westward like a piece of tumbleweed. Then I proceeded to feed the quail and juncos that inhabit the thickets on our property. As I scattered chick scratch on the ground, a frigid tongue of air licked at the collar of my sweatshirt. Dead leaves, dried to a crisp by the cold, levitated and whirled with dervish unpredictability about my legs.

The east wind that scoured the valley ended any pretensions autumn held with the weather. Technically, it still claims territory on the calendar, but a dusting of snow lays like sugar on my resting flowerbeds. Winter has asserted itself; today, at 5 am, it is 1 degree Fahrenheit with highs of 15-20 optimistically forecast for the coming week. In Oregon, fall is over.

Noah studying during last year's power outage.

Our family will be together for the holidays. Isaac, my youngest son, lives just a few miles away. He and his wife own a piece of property that abuts the Hood River. Noah, our oldest son, flies home just before Christmas. He lives in Berkeley, CA and attends Law School at Boalt Hall. It is a family joke that when he arrives the weather turns bad. Last year, while I recuperated from my stem cell transplant, his visit coincided with one of the worst stretches of winter storms we’ve experienced in three decades. On consecutive nights, the power failed from dusk until early morning. By the third night, everyone, including our cat, was crotchety.

That pattern reprised itself this week. After three days of bitter cold, the power failed and my wife and I awoke with the insecurity of losing what was taken for granted. We lay under our quilts hoping the problem would find a solution. Eventually, the day beckoned, cold floors notwithstanding, and we exited the house without breakfast or coffee.

It’s always instructive to do without, or, so I rationalized while on my way to work with a growling stomach. A cancer diagnosis triggers similar reactions in the gut. During the term of my illness, nearly two years now, my desire for things to be stable and predictable has confronted the ever-altering reality of life. I’m getting better at absorbing the shocks.

Our house on a bitter cold morning

As I proceeded to drive away from the power failure at home to the one awaiting me at the Post Office, my mood improved. I noticed one darkened house after another on the country highway leading to town. This was not a case of misery loving company. Instead, it was the realization that others shared my problem and were coping with it as best they could.

I immediately thought of my multiple myeloma support group. Our shared dilemma diminishes with each artifact of our lives that we impart to oneanother. My physical health is one thing. For that, I rely on modern medicine. My emotional and spiritual health are something else altogether. For that, I depend on you, the readers and writers and talkers who cope with the same problem and its unique presentation. The lesson of doing without, whether it’s electricity or good health,  rests with finding perspective amidst the disorder. I cannot attain that perspective alone. Gratitude for life in all its permutations, good and bad, comes easier when we commune with others.

My Post Office

Many of my friends with MM, both online and through my support group, live with this cancer’s serious complications. For some, each day is a trial. I recognize it’s easy to be an armchair philosopher when all goes well. So, forgive my Pollyanna parable. Yet, I’m also living evidence that treatments can slow myeloma’s advance. Hope is not an illusion.

I’m not concerned with jinxing my good fortune by talking about it. I accept that it is subject to change. All life has death concealed within it. I need only look at the barren state of my gardens for confirmation. Accordingly, I want people to know I am grateful for everything that life offers, from the frigid wind of winter to the warmth of family.  I’m also pleased that the electricity, tenuous as it is, works again.

Peace on Earth; Good Will Toward All.

It’s really amazing how my life has changed since October 8. I guess I’ve been on chemo or some other drug for enough months out of the past four years that I got used to being dulled around the edges. Like the aerator grill in my faucet had filled up with sediment, and the water that flowed was slowed to a trickle.

I’m not sure how much of my mental slowdown can be attributed to chemo brain and how much was due to my persistent, really frustrating fatigue. Anyone on chemo will tell you that forgetfulness becomes a way of life, and that you should probably put off your appearance on Jeopardy! until your hair grows back, if you’re really serious about winning. When you’re chemo-tired, and living your day from one sleep to the next (and there were definitely days like that), the last thing you have the energy for is coming up with a good blog topic or a killer craft to rock the next birthday party. But there’s also the possibility that the ass-kicking-name-taking process took most of the mental focus that I had outside of the eternal “what’s-for-dinner?” dilemma, and I completely lost all memory of being a smart person.

Now that I’m on the miracle drug, and my hair is growing in, and my body is (mostly) back under my control, it’s as if someone has CLR-ed my faucet and the water is running again. I wake up in the middle of the night and start thinking of things I’d like to do. Projects I’d like to complete. (Not just start, but complete!) Dishes I’d like to cook. Things I could make for Christmas presents. Stuff to write about. And when I wake up in the morning, I can actually remember the things I thought of in the dark.

I’m almost overwhelmed at the different trains of thought that I can keep track of at any given time. My mental soundtrack has been one or two notes simple for so long, I’d forgotten what it felt like to hear the full melody, harmony, counterpoint and rhythm rolling along with it. And far from being confused by the din, I’m enjoying hearing all the different notes, thinking about them individually, planning how to work on them, maybe even discarding them and moving on.

I’m not promising global domination, nor that my sedentary tendencies have been banished for good, but perhaps I’m starting to fit into these grown-up shoes I’ve been wearing for three-and-a-half years now. At least I’ll be better company at cocktail parties. And Alex Trebek should be quaking in his boots.

My blood work was great–a low “8″ in a 0-35 being normal. Lower than the last “11″. There was also a good CT scan in September. Doctor will see me in 3 months with a new CT and blood work. I’m still pinching myself and trying not to go too overboard on the good news. Still, I am greatly relieved and look forward to continuing in remission.

A year ago today, I can vividly remember exactly what I was doing and who I was with and the situation that I was in… and believe me at that moment I could not even fathom where I would be one year later.  I was in such a bad predicament, that I don’t even think I could look as far as three days or a week.  This year’s Thanksgiving is very special… I am at a place in my life of contentedness and fulfillment that I have not felt for a while and everything in my life makes ridiculous sense!  I am so thankful for many things but these 20 people and memories were vital to this year’s survival… I never stood alone and had all of you right beside me every single step of the way in Faith and Friendship.

Before you start reading, please click the PLAY Button… Some of you might not care for this song, but I’ve always loved it… this song came up on shuffle while I was writing this and it brought to the forefront of my mind, that although this is a love song… I really do feel this way for every single one of you…I know that you will always be there for me as you have been… and I know that regardless of what happens, YOU KNOW MY INTENTIONS and YOU KNOW that I will never fail you… You know that I will be here for you at a drop of a dime…I wish I could hold onto all of you forever even if we all intertwine in each other’s lives for a certain purpose or a moment in time… but I must thank you all for fulfilling my life in more ways than I could ever imagine… [if you are reading this on Facebook, please click on this link chrysantha.wordpress.com]

I just want you close
Where you can stay forever
You can be sure
That it will only get better
You and me together
Through the days and nights
I don’t worry ’cause
Everything’s going to be alright
When the rain is pouring down
And my heart is hurting
You will always be around
This I know for certain

1.  I am so thankful for the unconditional LOVE of my family.  My soul and foundation.  Without them I am nothing.  I am thankful that my Mother, continues to be the ROCK of my Family.  I am thankful for her strength and LOVE for every single one of us… She truly is the Individual who holds my entire family together.  It is her everyday struggle to ensure that we are all taken care of.  [Photo taken on Grandma's 98th Bday - The de Peralta Women L2R Ophelia, Cornelia, Grandma, Mildred, Archelita]

2.  I am thankful that after all of our hard work, the Family Business, that Grandpa would be so very proud of is up and running.

3.  Monica, I am so thankful for your unconditional love and support from DAY ONE!  And no joke, because you walked in a time of my life that was not so pretty, and you stood by me every single tear of the way to see me smile and hear me laugh every night before we go to bed!  You understand me and know how I feel or find the words for thoughts that I have not even thought of yet! Thank you for loving my brother unconditionally… you do not know how much that means to me… And thank you for always looking out for my family too! [Photo taken on one of our first Azul Dates, when I first moved back! remember the guy that kept pestering us if 'someone is in the bathroom?' lol]

4.  Pinsan Ashlee, I am so thankful for your love, understanding, and laughter!  I don’t know how I would have come out of the last three years and specifically the last Fall and Spring without you.  Although we no longer talk everyday, know that you always have a special place in my heart.  You are my soul’s constant gardener. [Photo Taken - January - Other than the fact that the first photo is with you in front of my FAVOURITE theatre in the world, this day is my favorite memory of you, of Us... Our drive through Tilden listening to Marley... You've brought so much soul to my Life that is irreplaceable... and we ended it with MANPUKU - what a perfect day! ]

5. Teri Anne, I am so thankful that after 12 years we are still best of friends.  I am thankful that you were able to come visit this year and I had the fortune to finally meet Jaden.  You are one of the strongest women I know, I continue to look up to you and draw strength from your daily courage. [Photo: Taken April 9th - Teri, Jaden, Auntie Faye - and LOL to you taking the photo with me pushing the stroller... yeah, the one and only 'Mommy-like' photo of me EVER!]

6. After almost 10 years, I thank God for finally bringing Nahwal and I together.  We began this summer sitting at Ocean Beach sharing our stories of heartache.  Within a month, with each other’s love, support, and “tell-it-like-it-is” attitude, we haven’t looked back ever since.  This summer would have been incomplete without you!  I have so many favorite memories of us, but I must share with you that the night (8/15) we fell asleep in the car in East Oakland and woke up on the 16th of August… I needed that Nahwal, more than you probably ever knew… you allowed me to wake up that morning at the Lake… my soul needed that to heal some hurt I still carried with me… and I love you for allowing me to.. then to top that day off.. Ghostface/Meth/Red… =)  ‘Like this Like this’… [Photos taken on our #1 Happiest Ocean Beach day ever, #2 on 8/16 Oakland, and #2 on 8/16 Minna - Meth/Red/Ghostface concert to celebrate your entrance to RT school]

7. I am thankful that my Grandmother celebrated her 98th Birthday this year!  Grandma we love you!  [photo taken on her 98th Birthday L2R: Brother, Grandma, Me]

8. Makai, you are my BROTHER.  Words cannot explain the love I have for you.  You appreciate, encourage, and unconditionally love me for everything that I am and everything that I am not.  We are going on three years and I am so thankful you are in my life.   This year, I also thank you for introducing me to Jen! [Photo taken at Meesh & B's wedding - YOU MAKE THE PERFECT WEDDING DATE!]

9. Miss JennyLowLow, I am so thankful that you entered my life this year.  Thank you for being genuine, understanding, loving, and strong.  Thank you for allowing me in your life when your Dad was ill and sharing in in his memory.  I know that everyday he looks down on you and is so proud of the Woman you have become – as I am proud of you… I am thankful for our L.A. roadtrip which put life in so much perspective for me.  I love you and I cannot wait to see what the rest of the year has in store for us. [1st Photo taken the night we met at the Beat Battle & I am so thankful that we did ... in so many ways you are the sister I never had! 2nd Photo from our beloved LA trip.]

10. Mochi, I thank you for your unconditional love.  We went through so much these last few years but you were always there to make me smile and show me love.  You have accepted me even when I was being down right retarded with the choices I was making with my life.  I could do no wrong in your eyes… I think you always knew I’d wake up and eventually fix my mistakes.  I love you and I hope you love your new home my Lil’  Mama! [Photo Taken this past September]

11. I met you when I was 18! wow… and Vikki, after all this years, I am so glad that you are still in my life, and if anything we have become so much closer.  I am so happy that you are happy!  You deserve the BEST in this world!  Also, thank you for introducing me to one of my favorite memories of this year, our camping trips… all because of Lucas! The both of you have brought so much LAUGHTER in my Life and thank you for letting me FEED YOU and your Families!  Thank You to the both of you for two priceless memories this year!!! [Photos taken on our first Bodega  Bay trip of the Year!]

12. I am Thankful for reaching another year in Remission after last summer’s scare and for reminding me not to take my health forgranted!  I am thankful that everyday I see the blue of the sky and every night I am able to enjoy the twinkle of the stars.  I am thankful that my toes can sink in the grain of sand and feel the cool of the ocean water on my skin.  I am thankful that I am alive and full of love FOR and love FROM so many people.  Lastly I am thankful for my friend, Halline who spent my remission day with me with two of my favorite things Japanese Food (Manpuku) and Baseball.  You have to know how happy and difficult it is for me everytime 9/11 comes around every year… thank you for sharing it with me.

13. I am thankful for Tomas Alvarez walking into my life… It is very rare that I am blessed with people as soulful, aware, full of love, and purposeful intention.  In only a few months you have helped me find the balance I’ve been lacking in my nursing career by giving me a positive outlet to share my Light. Thank you for also recognizing and acknowledging the Little Things that you do… and I cannot be more grateful to all of the beautiful people that have entered my life because of you! [Photo #1 taken at BRL Anniv Party @ Club 6 / Photo #2 taken at Lake County, BRL Retreat *John's face looks like that because while we are waiting for the timer to go off, I didn't know that I was crushing his already injured finger with my feet, but he stayed silent like a trooper! LOL* / Photo #3 taken at the Cultural Comptency Summit at Hyatt on 11/17]

14. I am thankful that the stars brought me and Jaseon together… another Soul Survivor who truly understands what it means to be One. Jaseon you remind me that I am not alone =) [Photo taken at Doin' it at the Park with our dope ass matching Fedoras!]

15. One of my favorite memories this year was celebrating Spring with Ashlee and “My Ladies“… Thankful for opening the Spring season of newness in Oakland with Pinsan. [Photo taken in Ashlee's Oakland Hill's home during Sunset, March 20th - Vernal Equinox]

16. Thankful for my wonderful birthday in Hawaii this year.  One of my favorite memories of this year was jumping of the Waimea rock.  Such a great experience… all of that adrenaline rushing through your body… fear, excitement, happiness all at once… You remember how ALIVE you are… and at the end you feel nothing but AMAZING!

17. I am thankful for my FreedomBirds, my one and only chosen tattoo for this year that I share with Pinsan and will forever connect us =) … and the day I made them I aimed you: “I AM FREE, SO ARE YOU and WITHOUT WORDS the Birds symbolize our goals and Forward Movement and Freedom FROM EXPECTATIONS”.  [Photo taken @ Ricky's Tattoo on March 15, 2009; Alameda]

18. I am thankful for Oakland.  You loved me in more ways than one this past year in my happiness, solitude, and in my despair.  You gave me a breeze when I could not catch my breath, you showered my winter nights with beautiful stars and warm air so that I could sleep in the comfort of the outdoors, you introduced me to the most caring strangers who reached out to help me when I could not help myself, you gave me the Lake to vent hours of thoughts, and you showed me the beauty of diverse people who unite time and time again striving to create a better community through music, art, and social justice. Oakland you held yourself up despite so much adversity this past year and I am proud.  [Photo #1 - A walk around Lake Meritt as the people began to gather at the courthouse in the wake of the Oscar Grant murder January 21. Photo #2 Oscar Grant Rally through the streets of Oakland January 23]

19.  Bear, Bear, Bear… we have come a long way from endless talks on my couch to drunken messed up nights and bitching about our exes… =0) I am so proud of you and all of your accomplishments.  I am so thankful for you Bear, probably more than anyone when I was in my horrible state last year… It was crazy… and you stood by me… with no criticsm only encouragement.  You NEVER LET ME FALL and you held me up every single step of the way… You are irreplaceable in my life… i truly miss our Dim Sum Sundays…!  [photo taken at Manpuku... one of my favorite nights with you... I love watching you eat!]

20. I am so very thankful for my beautiful home.  My family rests their hearts in a comfortable, gorgeous, peace inspiring house that we all deserve after a very difficult two years.   We were brought here as a family for a special reason…

21.  2 +1 = 3 … and Three, that’s my favorite number… We have an undeniable connection that even though we are at compete opposite edges of this country we manage to maintain a friendship like no other..  You and I are two very unique individuals and it has definitely been influenced to the way we were raised… There is NO ONE ELSE IN MY LIFE that can share the experience of growing up by the sea…  Germaine, I appreciate all of your LOVE for me… you tap into my soul like no other.  Like I’ve said before, I could only be so fortunate to find a man like you on my side of country… Happy Thanksgiving…

22.  Peeda… I am thankful for you because there is NO ONE ELSE that I KNOW that will GIVE AS MUCH as you do right from the get… I know that your friendship is unique in deed… You also entered my life at the beginning of the storm, and I was practically a stranger, but you reached your hand out and helped me without me ever asking… I am thankful that you are in my life you are a genuine friend.. and have always kept it real with me…

23.  I am thankful, for exactly a year ago, I woke up from a three year coma — I finally chose ME and left him.  Although it was a struggle here and there to finally rid myself of this disease an unhealthy addiction, it was a year ago that I finally took the initial steps so that I could stand up against the past and move onto a better future.  And I have never been happier and more content in my life.  But I am not angry, for you taught me what Love means and what it DOESN’T mean.  Through our relationship I saw the TRUE me… I saw the amazing things I failed to see about myself for so many years… You challenged me more than anyone ever has and through all of the hardship you caused, I rose from the depths of my despair and pain and blossomed into a person I could have never imagined myself to be.  I am STRONGER, WISER, and more APPRECIATIVE of the people around me because when I was with you I LOST SIGHT of SO MANY THINGS… specially ME.  I will never ever forget to LOVE ME FIRST ever again, and I thank you for teaching me that lesson.  Today I celebrate a year of being FREE.

I can’t believe it. Something worked! The results of last Friday’s CT scan are in, and while anecdotal (I won’t see the report until this Friday), I’m going to take the doctor’s “Your scans look better… good news all around” as a positive thing.

So let’s take stock: no symptoms (other than a mildly puffy left leg); declining fatigue; recovering cardiovascular fitness; renewed interest in culinary pursuits; hair growing in. One might be tempted to forget one has a medical problem.

Which seems to be a habit for me. Even when I’m down in the dumps, if I can just get the dog walked and the kids fed, maybe some grocery shopping done, I really have to remind myself (or step out of the shower and look in the mirror - yowza!) that I’m sick. So now that I’m starting to feel like a fully formed human being, that reminder every three weeks (and you can’t possibly visit The Cancer Factory without knowing you have a problem) might get increasingly annoying.

Rest assured, though, that I’m going. And adding Avastin to the top of my “Thanks” list! Let’s hope the fix keeps working; I could get used to this.

I was reminded recently of how unpredictable life is. You play the hand you’re dealt – every day – and challenge yourself and pray to seek out the good. For more than a year, this family has done just that and more. When Melissa called me one day there was a cautious excitement in her voice. Sergio would be home from Iowa City for a while so we decided on meeting her, Shawn and the kids at Davenport’s VanderVeer Park last week. It was a fun shoot full of personality and love.

Days later, one of Melissa’s Facebook updates: Sergio’s in remission again.. a perfect match bone marrow donor was found… snuggling with McKenzey watching a movie… today was a good day!

Being goofy…

Beautiful smiles…

In love…

A blanket of overcast sky lies across the state of Oregon from November to March. Intermittently, the colorless clouds darken and rinse the northwest with showers. I continue with my six-mile walks but, in such a climate, it helps to also have sedentary activities.

A good day for an axe murder

I love to read. In fact I’m an inveterate reader; I always have a book or two or three at hand. My tastes are eclectic, but once the rains arrive, I feel an urge to curl up with a good mystery. Few things cheer me up more than a cozy chair, a cup of hot tea, and the search for a ruthless serial killer.

My favorite mystery writers are the phlegmatic Europeans, in particular, the Swedish couple, Per Wahloo and Maj Sjowall. This husband and wife duo co-authored several classic police procedurals; The Laughing Policeman, The Fire Engine That Disappeared, and The Locked Room, to name just a few. These date back to the 60s and 70s but their skill at creating tense realistic puzzles transcends the generations.

Wahloo and Sjowall composed tales driven by the characters, not coincidence, guns, or sex. Instead, the detectives ruminate on the smallest of clues. Slowly they build a scaffold of facts that assist them in reaching a solution. All the while we peer at the inner workings of their imperfect personal lives, conducted under the pall of Nordic winters. Simply put, their imaginative problem solving occurs in the most uninspiring of circumstances.

The Oregon sky at midday, yes that's the sun to the left above the power pole.

Good medical research proceeds in much the same way. It’s a plodding and unglamorous career choice. It too relies on the assembly of facts gleaned from doggedly pursuing clues down theoretical rabbit holes. Many of these lead to dead ends. Eventually, though, the puzzle pieces begin to fit together.

Serial killer whodunits, such as multiple myeloma, a cancer with which I am afflicted, are slowly being solved by determined clinicians. Fortunately, the perpetrators don’t shoot back. But these sociopaths, living in the otherwise ordered community of our blood system, find themselves being stalked, cornered, and eliminated.

Recently, the Leukemia and Lymphoma Society treated my MM support group to a presentation from Dr. James Berenson. It’s fair to say he possesses the skills of a good detective: a patience and persistence necessary to catch a wily foe such as MM.

Dr. Berenson is the founder of the Institute for Myeloma and Bone Cancer Research and one of the world’s foremost authorities on multiple myeloma. The title of his presentation was Myeloma Treatments: Pacing Yourself for the Future.

Some highlights from his 90-minute talk:

Sky of mystery

1. He no longer recommends stem cell transplants in his practice. New drugs and their combination with other established drugs provide strong responses with less toxicity and side effects. He pointed out that multiple myeloma is a slow moving disease of the bone marrow. Therefore, it is illogical to think you can sustain that environment over the long term if you bomb it with high-dose chemo and a relentless regimen of maintenance therapy.

2. He sees little difference in the quality of life between a stable disease and complete remission. He subscribes to the theory that “less is more” with regard to dosage with drugs such as revlimid and velcade and steroids.

3. He advises not dwelling on lab numbers. He said it is more important to focus on protecting one’s bones and kidneys than it is to strive to reduce the M-spike to zero. Accordingly, he recommends the use of bisphosphanates even in the absence of bone lesions.

Penetrating the gloom

The mystery of MM will be solved, or, so says Dr. Berenson. He explained what he believes are the tactics to help us survive. His advice is to pace our selves for the developing strategies that will ultimately lead to a cure.

Whether or not you agree with Dr. Berenson’s ideas, his optimism matches a common theme expressed by others in the myeloma medical community. Though their theories differ, all anticipate a solution to the puzzle of multiple myeloma. Will the momentum of their investigations continue? I don’t know the answer. I am, like many of you, a character in this story, a clue to the mystery.

Aside from the insulative value that having your own hair adds to a winter’s day, it’s an amazing mental hurdle to feeling normal. Last spring, when I was going through chemo, the stuff I was on didn’t make all of my hair fall out; in fact, I only lost about half of my volume (which I can assure you is enough hair for any three other people). To the average observer, all systems were nominal.

This summer, when my hair started falling out in earnest (thanks, Taxol!), I was expecting it. I was even, in a small part of me, looking forward to it – quick showers, no salon appointments, no shaving, cooler summer days. And yet as blase as I can be about some of the stuff that happens with this battle, there’s something so unnerving about being bald. Oh, I know I have a cute head, that my wig is fabulous and I don’t even mind going around in a bandanna. But all of a sudden, the world looks at you differently. You’re a cancer patient, and everyone can tell.

Why does that bother me? I should be proud to represent, a survivor who’s still plugging along through the soccer mom’s routine: walking the dog, going to Target, meeting the school bus. Does it make me uncomfortable to get special dispensation — no, please, go ahead of me in line, I insist — or to accept help to the car with my groceries? Lord knows, there are days I can use it. Is that why I want my wig to look so natural? (Or am I just really vain?)

Do I worry about making other people uncomfortable? I’m more than happy to talk about my illness, diagnosis, symptoms, not only because I hope I can help someone else who may also be sick but because, really, who doesn’t like talking about themselves. Once people know you’re sick, though, they make sure to always ask you how you are, if there’s anything they can do for you, and I think I’m very conscious of that switch — I’m not just your average girl any more. I want people to want to know how I am not because they know I’m sick and are being solicitous of the poor cancer lady, but because that’s what you ask your friends. (And yes, I know that’s ridiculous; I know who my friends are and that they love me. This is not an entirely rational process, kids.)

It’s been so hard to teach myself to accept help from those who offer it, not just because I need the help but because it gives those who offer it a way to have some control over an uncontrollable situation. Offering help is a way to make it better, even if it’s only a casserole. So maybe passing for “normal” is another way I need to let go, be the best baldy I can be. Or maybe I’ll keep fighting to look ”normal” because looking good, for me, has so much to do with feeling good.

Anyway, thanks for the casseroles.

As you may have gathered from my previous post, last night was a cause for great excitement and anticipation to me.  I was finally going to see Mastodon, one of my favorite bands and one that I have been listening to from the release of their first album.  Converge (a more recently-discovered favorite), High On Fire (one of the better bands on my obscure-music radar) and Dethklok (watch Metalocalypse if you don’t know who they are) are currently on tour with Mastodon and shared the stage with them last night at Austin City Music Hall.

Yesterday afternoon, after finishing an unavoidable, unfortunate in-class writing assignment, my compatriots and I (roommate Andrew, friends Justin and Jimmy) loaded up in my humble but dependable Dodge Neon and hit the road for Austin.  We made pretty good time (until we actually got into town, that is) and grabbed a bite to eat at my aunt’s house before heading over to the concert, earplugs in hand and hearts steeled for the musical onslaught to come.

Due to the delay in departure caused by the aforementioned writing assignment, we didn’t arrive at Austin City Music Hall until 7:30 or so (the doors opened at 6 and High On Fire had been scheduled to start at 6:30).  I was a little disappointed at missing High On Fire, but as we entered and I heard the opening strains of Converge’s “Worms Will Feed/Rats Will Feast” I knew that we were in for an incredible night.

Converge, in a word, are intense.  Jacob Bannon flung himself around the stage with abandon, swinging the mic wildly by its cord and catching it with a tattooed hand just in time to deliver one of his guttural near-shrieks that seemed to issue forth from some kind of possessed beast rather than a man.  From time to time he would bang his head wildly along to the cacophony behind him, releasing a spray of sweat and water in a vicious arc that shone in the stage lights like a liquid halo.  Kurt Ballou and Nate Newton were in perfect sync with madman drummer Ben Koller, as if the six arms playing the guitar, bass and drum kit belonged to the same man rather than three.

Converge dish out an inimitable blend of hardcore punk, thrash metal, and grind that’s intricately technical yet rippingly raw and elemental, and is a little difficult to come to grips with at first. In fact, the Austin crowd seemed to be unsure about how to react to the audio assault taking place onstage before them, and most people stood around trying to figure out just what to think about it.  Meanwhile, I threw myself into the experience as Bannon warned the crowd (in a disarming normal tone that was so completely opposite the raging harbinger of doom that we had just seen) that they had four more songs to throw at us.  Starting with “Dark Horse” from their latest record Axe To Fall, Converge tore into the last part of their set with ferocious energy, wrapping up with the impossibly raw “Concubine” from their seminal album Jane Doe.  The whole thing might have taken six minutes – that may give you an idea about their speed.

We were given a brief respite from more musical attack while Mastodon set up.  There appeared to be some problem with the video screen on the stage, and a technician spent a good 15 minutes trying to fix it back up again while crowd cheered him on when a section of the screen popped back into view.

Then the lights dimmed and Mastodon strode forth onto the stage.

The intro to “Oblivion” began, and the dynamic buildup of the song whipped the crowd (whose mosh pit had coalesced directly in front of where we were standing – how lucky) into a furor that crashed down in a wave of bodies when the first bars of the verse hit.  “I flew beyond the sun before it was time,” drummer Brann Dailor sang, and we sang with him.  Each successive track from Crack the Skye caused a greater and greater reaction, and I was sucked into the circle of headbanging, shoving fans more than once.

Behind the band, up on the video screen, a series of video clips played that correlated with each song, mirroring the spacey concept story of the album and upping the atmospheric factor of the show tenfold.  Each track was played flawlessly, each complex arrangement (including two tracks exceeding ten minutes in length) executed with energy and dedication.  Hearing the songs on CD is awesome, but hearing Mastodon unleash them live was something else entirely.  The heavier tracks (like “Ghosts of Karelia” and “Crack the Skye”) were so much heavier at the show, I could hardly believe it.

After somehow playing through all 50 minutes of Crack the Skye without missing a note or faltering in their vocal delivery, Mastodon exited the stage for a brief but moody keyboard interlude while they got their gear set up for the older tracks that I knew were coming.  I was probably looking forward to hearing those even more than I had been the new album, especially with the element of surprise – which songs will they play?

The band stepped back out on stage to a roaring crowd that wasn’t ready for them to leave, and then Brent Hinds kicked out the frenzied opening guitar lick to “Circle of Cysquatch” from Blood Mountain as that album’s three-faced demon-deer artwork appeared onscreen.  The change of pace to the older, more aggressive Mastodon instigated even more madness in the mosh pit.  When the weighty breakdown at the end of the song was over, there was a moment of anticipation before a great white whale filled the screen and Brent floored the crowd with the incredibly technical intro to “Aqua Dementia” from Leviathan.  I was once again astounded at the effortless manner in which they performed these complex songs at breakneck speed and reminded again why I like Mastodon so much.

After “Aqua Dementia” was over, everyone knew what was coming.  Mastodon would delve deep into their oldest debut-album material and absolutely flatten everyone with its sheer dirty Southern-metal brutality – and sure enough, as the exploding horse artwork from their 2002 release Remission faded onto the screen, they dropped “Where Strides the Behemoth” (one of my favorite tracks from that record) on us like a ten-ton hammer.  After shouting along to the closing lines of the song, I turned to Andrew and voiced my hope about the next track – would they?  Could the possibly play it?  Would I be so lucky?

I was so lucky.  The gristly, rust-covered guitar intro to “Mother Puncher” started and I jumped up and down like a little girl who just got told that yes, she really was getting a pony for her birthday.  The lengthy instrumental opening to the song gave way to the raw, sludgy verses that I knew every shouted syllable of and ended like a knockout blow in the dirtiest MMA fight you’ve ever seen.  Over 80 minutes of Mastodon.  This is definitely what I had paid for, and so much more.

I’ll spare you such detail about Dethklok (though they were hilarious and blindingly proficient on their instruments) even though most of you have probably stopped reading already.  They were certainly entertaining, and the crowd was nearly as responsive as they had been during Mastodon’s set.  They ripped through the most brutal tracks in the universe (as they would say) like “Murmaider”, “Thunderhorse” and “Pull the Plug” while animated music videos for the cartoon band played behind, ending with the fan-hating death metal anthem, “Fansong.”  There were several funny interludes, and the whole set kind of came off as one really long episode of the show, which is in no way a bad thing.

We left the venue with ears brutalized, our necks sore from headbanging, and our throats raw from cheering and shouting along.  This was, far and away, the best concert I’ve enjoyed to date.  My only regrets are missing High On Fire and part of Converge’s set (both unavoidable – thanks a lot, ENGR 482) and not having a camera, though being without one was probably wise given the moshy nature of the crowd around us.

I know this is an incredibly long post, so if you’ve made it here to the end, I congratulate and thank you.  I hope that I’ve given you an idea of how intense, how fun, and how metal last night’s concert really was.  There is no doubt in my mind – it was the metallest of them all.

I’ve had a pretty good couple of days. Just a week ago I was thinking that I’d never get to feeling better. But I learned some things from some other porphies that seemed to make a big difference. Yes, we call ourselves porphies. Or, at least, I call ourselves porphies and they all seem to go along with it, so…

Someone (a porphie,) found my blog and sent me to the Yahoo! Porphyria group. There’s seriously a Yahoo! group for anything and everything as it turns out. So I started posting about my experiences and asking these folks for advice, and I got a LOT of feedback. Turns out, I was “smoldering.” I wasn’t in an attack any longer, since I’d gotten to where I was sort of able to get on with life, but I hadn’t made it to “remission” either. I was still getting really nauseated and occasionally throwing up (OK, occasionally = 2 or 3 times a day,) and I was still having quite a bit of pain, especially at night. Oh, and I had this really awesome freak-out attack thing!

It was late in the night, and I’d had a full day. Some neighbors stopped by to chat and see how I was doing, and we ended up sitting up with them until midnight or so (crazy us!) I’d taken all my meds around 11, which was some morphine, a reglan, a cimetidine and a colace. By 12 I started feeling sorta wierd, so I told the neighbors to “stick a fork in me, ’cause I’m done!” (just like that,) and Eric and I headed off to bed. By the time I was in bed, I felt like my whole body was crawling out of itself. Huh? Yeah, I had kind of this creepy feeling all over, in my tummy and legs and back, a bit like when I used to get restless leg syndrome when I was pregnant, only this was worse and more horrible. I started shivering uncontrollably, and Eric got really freaked out. He kept trying to calm me down, but the more he felt the need to calm me, the more I knew he was freaking out, so I just got more anxious. We fed off each other in this way until I was in full-blown panic attack mode. I was rolling around on the bed, kind of crying and moaning, looking for a comfortable position,  while my insides itched, and I became increasingly convinced that I was going permanently insane. I’ve imagined being permanently insane before, and THIS was NOT how I pictured it. Not at all. I was NOT happy about this scenario one bit. I’d imagined permanent insanity to be an ignorant and lovely kind of thing, where I believed I was A-OK, and was truly fine with the world I’d created for myself to live in, and only everyone around me knew I was insane, but it wouldn’t matter because I was happy. But rolling around with crawling insides and  the body shakes is NOT a blissfully ignorant sort of insanity by any means, and in fact falls into the category of Movie Subject Matters I Avoid At All Costs. Eventually Eric rubbed my back until we both fell asleep, me with my arms wrapped around myself, laying belly-down, knees curled up under me with my butt in the air, baby-style, and he, propped up on one elbow, with his other hand on my back, his head bobbing around on his neck and drool running down his chin.

So that happened. And I kept feeling a little sicker everyday, and then I got the magic answer.

After posting my drug regimen on the Yahoo! board, people started flooding my inbox with freak-outs. Turns out, reglan is on the UNSAFE FOR PORPHYRIA Drug List (!) and I was taking it three times a day!!! Also, cimetidine is controversial, with some saying it completely controls their symptoms, but others saying it makes symptoms way worse. AND,  I was taking Miralax regularly to fix what the morphine breaks (my ability to have bowel movements, that is,) and THAT is also on the UNSAFE FOR PORPHYRIA Drug List.

THANKS A FUCKING LOT, DOCTORS!

(Miralax side story: It had been a couple days since a good, you know… So Eric told me I needed to take some Miralax in prune juice. I told him if I did, he had to as well. So he whipped up two cocktails, which we pretended were end-of-the-day apparetifs, and named them Purple Ass Shooters. He brought the drinks into bed for us to chug while we watched Arrested Development on Hulu, and we hemmed and hawed, biding our time before we actually drank the awful stuff, and then I dumped my whole. freaking. glass. Yep, all over the bed and Eric. To Eric’s great credit, he didn’t even get mad. He just got up, changed the sheets and himself, and made me another drink. And then we drank them.

Eric ran to the bathroom immediately upon waking up in the morning, and visited it two more times before even going to work. Lucky bastard.)

So I’ve now stopped the poisonous drugs, and low and behold, I’m feeling TONS better! I’m starting Day Number Three without nausea and hatred towards humanity! It’s so exciting! And I also get to chew my doctors out for not paying better attention to The List, which will be really satisfying.

And now, we leave this evening for Round Hill. We’re off to see Eric’s folks for his 30th birthday weekend. I’m a little concerned, because I’ve learned how many things are triggers for attacks, and I will encounter ALL of them on this trip. We have to take our own sheets, which have been laundered in Seventh Generation non-scented detergent, as the standard stuff is toxic for me. I’m taking my in-laws a gift basket full of all-natural non-scented house cleaners and dish soaps and stuff, since regular stuff is full of chemicals that can almost-kill me. (By the way, they’re not good for YOU, either, even if you DON’T have porphyria, and they’re certainly not good for our Mother Earth, so feel guilty and stop using them. They’re not going to clean or disinfect any better than a bottle of vinegar can, and you’re slowly poisoning yourself. And if you ever have a porphie guest in your home, you could instantly poison them, and don’t say you’ll never know a porphie, because you’re reading this, aren’t you, so you know me!)

If I have an attack while in Northern Virginia, I’ll have to go to a hospital where they don’t know anything about me or my disease, so it could be frustrating. I’ve started making my ER binder, which every good porphie has. It’s got all my drug info, basic info about the disease, treatment instructions, my docs’ contact info, instructions for not using perfumes or chemical cleaners around me, etc. etc. But the binder isn’t done yet, so I can’t get sick until it’s finished.

Then Wednesday I’m supposed to have my big important appointment at Johns Hopkins. Although, I’m getting skeptical as to whether or not this will be worth my while. We’ve asked the doctor to call me before the appointment, so I can be sure he actually knows how to treat porphyria, and I’m not going to be just a guinea pig for him, but he hasn’t called back yet. It’s MY money and my time, and I won’t be a happy camper if I get there and it’s another “Wow! You have porphyria! That’s amazing! I really don’t know anything about it because I’ve never seen it before, but this is FASCINATING!”

I’ll shove my fascinating foot right up his amazed ass, is what I’ll do.

So here’s to safe travels and continued “remission” and knowledgeable doctors and non-toxic hand soap this week! And don’t worry, I’m sure I’ll have plenty to write about, as my mother in law will be under the same roof as me for a week. Oh boy.

Recently, I met with my oncologist, Dr. M. His practice is located in Portland, OR. Each Thursday, however, he travels 60 miles up the Columbia River Gorge to Hood River. Here, he spends the day attending to cancer patients in our small community.

The mighty Columbia River

He commented that my disease continues to be in “complete remission.” His opinion is based on the ratio between my lambda and kappa free light chains. Usually, in addition to a CBC and Chemistry Panel, the SFLCA is the only test he orders to check on the status of my multiple myeloma. Once again, the ratio is normal.

So, I enjoy a drug-free remission fourteen months in duration since my autologous stem cell transplant in 2008. And, Dr. M extended the necessity for our regular appointment from two months to three. I will not see him again until January of 2010.

In many ways, I am an unremarkable patient with multiple myeloma. My age is consistent with the most prevalent group of individuals with this cancer. I have a monoclonal band in the lambda region of IGG, a common variety. I was diagnosed under typical circumstances: while undergoing a routine physical examination.

Sky at sunrise from home

To recap my disease history, I became aware I had MM in December of 2007. My only symptom was anemia, detected when being turned away from Red Cross blood drives on several occasions dating back to 2006.

At diagnosis my IGG level was above 6400 mg/dL and my M-spike was 4.6 g/dL. These numbers reflected stage one multiple myeloma. My risk factors looked good: I had no bone involvement, my kidneys functioned well, and there were no cytogenetic abnormalities. I immediately started a combination oral drug therapy of thalidomide and dexamethasone.

Simultaneously, I requested a referral to the Seattle Cancer Care Alliance for a consultation on a stem cell transplant. After four months of the thal/dex, I opted to do the transplant sooner, rather than later. Peripheral neuropathy in my feet, a side effect of the thalidomide, troubled me.

Autumn sky and Mt. Hood from Lost Lake Road

In early 2008, thal/dex followed by a peripheral blood stem cell transplant was the standard of care. The transplant experience, though arduous, occurred without a hitch. The SCCA has numerous specialists in MM and perform hundreds of these procedures each year for a variety of blood cancers. I marveled at their competence. The near flawless execution of the complicated outpatient process impressed my wife and I. Obviously, I’ve responded well.

A remission, though, is not a cure. Another blogger said it best, and I paraphrase, “Stable disease does not mean it is dormant.” In August of this year, I underwent a skeletal survey. No overt evidence of lesions appeared. The radiologist did note subtle lucencies on my left humerus, the large bone of the upper arm. Of course, as soon as I left the doctor’s office, that arm began to bother me. Like a chipped tooth, I couldn’t leave it alone; the tongue of my imagination rubbed itself raw with worry.

Moonrise from home

Over the course of the next two months, I received my childhood vaccinations, traveled across country and back, and went about my usually active lifestyle. All the while, the left arm persisted in aching. The pain was two on a scale of ten. If I did not have MM and the suspicion of bone lesions from X-rays, I would have ignored the feelings, assuming they resulted from overuse.

This October, after Dr. M happily shared the results from my blood work, I mentioned the arm. He referred me to radiology for an MRI. There, I received a thorough imaging that included an injection of dye to definitively detect any lesions or tumors present on the bone or in the marrow.

Today, Dr. M’s medical assistant called with the results. The radiologist had commented that the MRI was … unremarkable.

The view from my desk

In spite of my positive review of the SCCA and the strong response to the SCT, I must confess that we’ve arrived at this juncture operating by the seat of our pants. It worked out, but it was somewhat due to the luck of the innocent. I would not go so far as to suggest others should undertake a transplant ASAP, as I did. Now, in late 2009, there are other choices that have been added to the menu.

In just two short years, treatments for MM have progressed rapidly. Data from numerous clinical trials, of both manufactured drugs and natural supplements, bode well for the futures of those newly diagnosed. Options expand, as well, for patients with relapsed disease. The grim prognosis long associated with MM tips closer to manageable as opposed to incurable. Now that is remarkable.

I got this video from “Creative Chronic Babes” and found it appropriate for just about anyone. Elizabeth Gilbert is funny, soothing and inspiring. Although you may not end up ROFL, it’s still a must see if you enjoy a great speaker and want to feel inspired. Sit back and enjoy.

I just started reading through Gospel Worship by the great Puritan, Jeremiah Burroughs, and it is excellent. Here is a list of the “Gospel” series written by Burroughs. You can click on the cover to view it over at WTSBooks.

Where were you four years ago?

It was the fall of 2005 and Hurricane Katrina just swept through New Orleans. The Houston Astros made their first World Series appearance. John Roberts was sworn in as Chief Justice of the U.S. Supreme Court. And I underwent a clinical trial bone marrow transplant.

On September 27th of this year, I entered uncharted territory – I crossed the four year cancer-free mark. This is now officially the longest remission I’ve had since I was diagnosed with Hodgkin’s Disease fifteen years ago.

Four years went by FAST, but it seems like a lifetime ago. For a loooong time, I didn’t recognize myself in the mirror. Does this look like the same person to you?

"Mole Girl" in February, 2006.

And in 2009.

Recovery has been a long road. Following my transplant, I went more than two years unable to even drive. I spent several months in a wheelchair, partially paralyzed.

Not only am I now feeling great, but this past weekend I was able to do something that would have been impossible a few short years ago.

"Geared up" and ready to zip!

I went zip lining through the redwoods. Suspended 150 feet in the air, flying through the branches, twenty miles an hour, zip lining. I’m far from a daredevil, so this adventure was quite a thrill for me.

One lesson I’ve learned through all of this medical nonsense is that life is not a dress rehearsal. I’ve spent a large part of the past decade on the sidelines, wondering if I’d ever be able to get back into the game. Now that I am healthy (or some semblance of health), I am not going to let the opportunity to live pass me by.

Well, I’ve been absent from this blog for a while. There are many reasons for this. Summer travels, moving into a new position at work, getting our first son off to college, and soccer tournaments are some reasons just to name a few. But also during that time, it began to be clear that Enbrel just wasn’t working for me anymore. When I first started it, I called it a miracle drug. I had almost regular levels of energy (although I’m not sure what’s regular anymore), joint pain and swelling was down, and I started living like RA was on the backburner…always there but in the background. I think that the first sign that Enbrel wasn’t working was those weeks when I’d get 2-3 days of relief then spiral down. My wife joked that I got a placebo those weeks. Then it became more regular and relief would only last 1 day or even less. I found myself reaching for that dreaded prednisone steroid just to get by. Sleep was disrupted with joint pain, and an MRI revealed cartilage damage in my knee.

Creative Commons License http://www.flickr.com/photos/adamrstone/

Off to the rheumatologist I went for a discussion about next steps. I am so glad to have such a good rheumy. He listens carefully and never second guesses what I tell him. He has years of experience with lots of meds. He was even involved in clinical trials of Enbrel from the beginning. He said that a small percentage of Enbrel patients don’t respond or loose response over time. I’m obviously one of them. I figured I’d get put on Humira, a similar TNF blocker, or get put on one of B-cell killers like Orencia. Instead, he prescribed Cimzia. This is a new TNF blocker that is PEGylated…it has a chemical attached to it that allows it to stay in your system longer. It was just approved by the FDA for RA in May 2009.

Switching meds seems to be a common thing for RA patients. I’m now on my 4th if you don’t count prednisone. Time will tell if Cimzia works for me. It’s a struggle physically and emotionally going through all these ups and downs. But knowing that I get to try a new med, even if I have to inject two syringes once a month, gives me hope! Stay tuned for results.

All of this leads me to wish that RA would be better understood and that a real cure sending  patients into remission would be found.

You just bought yet another supplement. Two weeks down the road, you haven’t noticed any changes. The supplement is expensive and you’re tired of keeping your hopes up. Is it worth continuing? After all, shouldn’t it have done something by now?

When I was diagnosed with Rheumatoid Arthritis, one of the very first medications they give you is prednisone, a type of steroid, known as a corticosteroid. As with any steroid, this drug is very fast acting. Unfortunately, the drugs I tried after Prednisone took much, much longer to work. Methotrexate can take up to six months to work for some people, while for others it can work as early as one or two months. And then there are others who never experience any relief from Methotrexate after having been on it for many months.

So what do you really need to know when trying out a new drug, supplement or therapy? How do you know if you’ve given it enough time? Why is it that some people seem to do really well with supplements and claim they work, while others claim they don’t work at all? Why do some people have to try endless drug therapies before they finally reach the right one, while others might get relief right away?

Here are my thoughts on how to make any drug, supplement or therapy a success………

1. Research the drug, supplement or therapy.

Research, research and then research some more! It’s impossible to have a successful outcome from all drugs or therapies in terms of getting relief, but not wasting your time is success! I always have my favorite dependable sites like Mayoclinic for example that I depend on for information, but do be sure to also look at blogs, Wikipedia and ask people on support groups, as well as people you might personally know. It’s important to get a well rounded view on possible outcomes. Most people will be against experimentation. You’re not always going to get the kind of support you want, and that’s something to consider also. In the end remember, it’s your body and your decision, period.

2. Have realistic expectations.

If you have a chronic disease, the odds are against you, that you will find a drug or supplement that puts you in remission. Many people do go into remission, but many more don’t. There are different types of remission as well. Most people who achieve remission, achieve “drug induced remission” meaning that if they went off the drugs, their symptoms would come back full force. There is the rare person who achieves remission and can go off drugs without the return of symptoms. There are also different degrees of drug induced remission. You can be considered in remission and yet still have some symptoms of the disease. Most auto-immune diseases require “stacking” medication before symptoms of the disease are relieved. Keep that in mind when taking supplements. Although there are many supplements that can do amazing things, you will mot likely still have some symptoms of your disease if you are on only one supplement. Drugs and supplements both take time to work. Research how long it usually takes for something to work and consider adding on an extra month just in case your body takes longer than most. Remember that this is somewhat of a gamble. Even your doctor doesn’t know what drug will best suit you or how long it will take.

3. Understand “Hering’s Law”.

Natural Healing is based on “hering’s law” which in a nutshell means that people often re-visit previous symptoms temporarily. This is often when people quit their new supplement or medication, while re-visiting symptoms is often an indicator that you’re on the right track! Having side effects from a drug or supplement doesn’t have to be a bad thing. Any kind of detox will give you side effects simply because the toxins have to re-enter your blood stream and exit your body. This can cause lots of symptoms. Antibiotic therapy is also another therapy that people often stop because they suddenly get side effects. If people could just realize that this is often a sign that you’ve found the right medication for you, they could stay on the right track and reap the benefits right around the corner! On the flip side, side effects that are not normally a disease symptom, like vomiting or blurry vision, depending on your disease, could be a sign that the drug you’re taking is not the right drug for you. For people on drugs like methotrexate, side effects often become less severe over time, but this is not considered “Hering’s Law.” “Hering’s Law” is the re-visitation of old symptoms from the disease itself, not new side effects from the drug. If you are having severe side effects like vomiting or blurry vision and these are not normal symptoms of your disease, then you should consider talking with your doctor and possibly coming off of the drug.

Some pharmaceutical drugs don’t cause you to re-visit symptoms because they suppress the immune system. Suppressing the immune system, vs. emptying the body of toxins are two entirely different things. It’s important to realize that side effects are simply part of the healing process when it comes to a lot of supplements, alternative therapies and select drugs.

5. Don’t group all supplements or alternative medications into one lump sum.

Look at each one individually and it’s specific mechanics. This means that if one product doesn’t work for them, they often give up on all products even though they are all so vastly different. Again, research is key. It’s absolutely essential to understand how a supplement, drug or therapy works so that you’re not hindering the process. Some supplements or drugs require a special diet or other supplements in order for them to work. N-Acetyl Cysteine is one of them. It rids your body of toxic metals. But it’s important to take this supplement with extra Vitamin C among other things in order for it to work. Along with that, you have to supplement the metals that are important to your body, like zinc, iron and selenium because N-Acetyl Cysteine doesn’t have the capabilities of only selecting specific metals.

6. Try to take into account how complicated the body is, how much it changes from person to person and how if something doesn’t work for one person, it doesn’t necessarily mean it won’t work for you.

We eat different foods, have different lifestyles, have different personalities.  OF COURSE we’re all going to react differently to medications, no matter what they are.  That’s just part of being human. Even a supplement like  Vitamin E, for instance, can take up to three months before you might notice a difference. So hang in there and give it plenty of time!

7. Natural healing needs the effort of the person to consider what they’re ingesting, whether it’s the wrong foods or medications that are inhibiting the supplement from working.

Again, research is key. When I finally took the leap and tried alternative therapies, the first thing I tried was Low Dose Naltexone. There was a growing buzz on the internet and in my support group that LDN was working for people with autoimmune diseases, particularly Multiple Sclerosis and Crohn’s. I convinced two other people on my support group to try LDN too. We couldn’t find anyone on the internet who had RA and was trying LDN and the only information we could find about it was on the LDN website. We had no idea how long it would take to work, or how well it could work. All we had were each other, and that was at least, something.  We also learned that the drugs we were on, immune suppressers weren’t compatible with LDN, according to the LDN website, so we needed to get off of them in order for LDN to work.

One of the women, we’ll call her Susy, started feeling a difference with LDN right away, while the another woman, we’ll call her Jennifer and I were waiting patiently for something to happen. At around two months, I noticed I could finally sleep on my sides again, something I hadn’t been able to do in over a year. It was a miracle. But Jennifer still hadn’t had any positive results with LDN. She had stopped taking Enbrel, and I had stopped taking methotrexate. So we were really dependent on LDN working. As time went on, she tightened up her diet and went through horrible flares. She almost gave up. Enbrel hadn’t worked for her, so she continued to hope that LDN would do something. After six months on LDN she started to finally reap the benefits. But why did it take so long? And why at the four month mark, did both of us start to experience more frequent flares? She eventually decided to try minocycline therapy while still taking LDN. We agreed that LDN was working for us, but we also felt that because we still had inflammation, we needed something more to get things under control. Four months later of Minocycline and LDN, and Jennifer is in remission. She no longer takes LDN or Minnocycline. She is a perfect example that some things are worth the wait.

I never took minocycline therapy and I have various reasons why. Instead I decided to try Serracor-NK, which was a recommendation from a neighbor. At first I was skeptical because so many other supplements I had tried didn’t work. Still, I was impressed with the case studies online and one in particular with an older woman with RA who took Serracor-NK. But after one month and no changes, not even any noticeable side effects and I started to wonder if my money was going down the drain. Knowing the supplement did not decrease the woman from the case studies’ ESR rate until the second month, I vowed to hang in there, determined that if I didn’t at least stick it out that long, I would always wonder if it could have worked. To my grateful surprise, at two months I did feel a difference, and at four months, I felt a tremendous difference. In fact, each day gets better and better!

In the end, listen to your body and do what you feel is right. You have to live in your own skin. You are the only person that knows you the way that you do. And don’t forget to share your successes with the rest of us!