Dark Hour of the Soul

Thankfully the darkness has abated.  I am still tired, and feeling yucky, but I am far from  where I was on Friday.  So thanks to you all for your love and support.  It meant more than you know. 

Michael said, well, the good thing about going through tough times is that they can get easier once you know you can make it through.  And I did make it through.  Whew. 

So I am sitting here, on the futon on the living room floor with Curtis sleeping cuddled in between Michael and me.  Michael is also sleeping so sweetly after working a 15-hour day today.  Life is slow, but sweet. And we made it through. 

Happy Solstice and sweet dreams!

It's not over...

Well, the pity party isn't over yet.  I thought that I got it out last night, but who was I fooling. I am still wanting to complain, and maybe once I do a little more, I'll get over myself. 

First of all, I feel like screaming loud and long.  That won't really work right now...seeing as I am hooked up to an IV in a room surrounded by people.  Getting one of the gazillion I have already gotten, and still have left to go.

Second of all, I am tired of all this crying.  That also makes me want to scream. 

And let me tell you about steroids.  They are awful.  They turn you into a red, puffy-faced monster.  As if I don't already feel ugly enough, I get hit with a weight gain of 5 pounds overnight, devil cheeks, sausage fingers, insomnia, ravenous food cravings that can't be satisfied because I can't eat anything I am craving, and irritability. 

I have an anal fissure which is about one of the most painful things I have ever had to deal with.  I've had it for over a month now, and there are no signs of healing.  Sorry if this is TMI, but this is the shit I am dealing with, and it has to come out if I feel like I've fully complained. 

I made dinner last night, barely...Michael had to work late.  And me with these darn food cravings, had to eat.  And, we had our CSA food that we insist on eating before it goes bad.  I made rainbow chard, sweet potato, and sausage--all local, all organic, all from our CSA.  This is actually something that made me happy.  But damn if I couldn't make the dinner without having to go and sit down every 5 minutes.  And you better believe I didn't even bother with cleaning up afterwards. 

I was almost asleep by the time Michael got home.  But we had some time to connect and be together.  We went to bed around 10 and of course...when it is bed time I am NOT TIRED!  WTF???  The damn steroids!!  So I got up and took some GABA and managed to toss and turn all night.

I've been awake since 6am, and finally annoyed Michael enough with my huffs that he suggested we get up and go for a walk.  I asked it if was raining--he looked outside, and said NO!  So we got all dressed and bundled and Curtis all excited, to open the door to ...rain...Oh well, were were up and about, so we braved the rain and wind.  And it was kind of funny. 

We come in, and I am cold and wet, but can't take a warm shower because I have this port needle in my chest.  And CAN'T shower 4 days a week.  So I huffed about that and proceeded to make breakfast in the small space I could find that wasn't junked up by our dinner dishes. 

And then I can't get dressed because everything I put on makes me feel fat, and I hate the way that fabric feels on my body.  I soak my puffy eyes in a warm wash cloth, and I just realize there is no use.  I am ugly.

I just don't feel good. I don't feel good.  I don't feel like myself.  I have a vice clamp over my brain, I am foggy headed, tired and just plain yuck.

I feel nausea begin to set in, and just think, great...welcome back.  Glad to have you.  And I pack my bags and head to the doctor.

***screammmmmmm***

I'm just in a funk.  It took 6 treatments to get here, but I have arrived.  I will get an attitude adjustment soon, but just give me this for now.

art by http://www.louisagiffard.com

Pity Party

I finally got to talk today to a woman at the clinic who I've been seeing there for awhile, but we've never connected.  I knew she had breast cancer--and she's only about 5 years older than me.  Today I find out that she has two little kids, a wonderfully supportive husband, and breast cancer metastasized throughout her body. She was waiting to hear today whether or not it is in her bone too.  WOW, talk about heavy.  She's been on all sorts of chemo, radiation, alternative stuff, etc.  And it is still spreading.  Her heart and lungs have suffered damage from all of the chemo.  She's been fighting this for over two years.  She remains upbeat, and I find she takes strength from her family and friends.  She doesn't talk much while at the clinic--she usually just curls up in a ball and sleeps.  She said a friend asked her how she doesn't just want to give up.  She says she just takes one look at her little ones and knows that she absolutely can't.  She is a fighter. 

So it was good to talk to her today of all days.  It snaps me back into reality.  I've been having a pretty tough week--even before the chemo on Wednesday.  I just felt so tired no matter how much I slept.  I've been feeling down about work and how I can't seem to manage that very well.  My brain feels foggy if I have to think about science things.  And I see how I am not able to manage all the projects the way I'd like to.

And it started on Tuesday night that I got these voices in me screaming---NOOOooo I don't want to go tomorrow. I don't want to do this again.  And all morning on Wednesday...it was like I was a kid having a tantrum.  I...don't...want...to...GO!!!  aahhhhahhhH!! I was in such a bad mood. But I went.  And Michael took me there kicking and screaming.  And I did it.  And cried the first 20 minutes of it all.  I couldn't stop crying.  The nurse and Michael just let me cry.  Which was nice.  There are only so many I'm sorry's I can say when explaining my episodes.  Michael held my hand.  I just couldn't stop thinking that if I go by what the Dr. says, this is only half way.  HALF WAY!  And then I just get to crying again and have a good old fashioned pity party for myself.  I keep hearing Grandma saying...somebody punch her TS card!

Michael dropped me off at my parent's house after the treatment because it was close to work, and he had to go back there for awhile.  jI finally got to watch the Top Chef season finale (we cancelled our cable a week before the last show). Kevin, my favorite, and the Atlanta local chef for Woodfire Grill--amazing btw!!, didn't win.  So I was diappointed by that. 

After the show I talked to Rin for awhile, and then my parent's came home.  I can't tell you how nice that was to lie in their bed, with their love surrounding me.  Mom sang to me the Gaitrya mantra while rubbing my head.  Dad gave me some good suggestions for helping heal some wounds.  Then Michael came over and we four just hung out in their bedroom chatting til we got hungry enough to eat.  Mom threw together a nice meal.  I like being around people I love...it really helps lift my mood. 

And then, here comes the night...We went to bed, and the tingly arm and leg I'd been noticing ever since the chemo treatment  felt like it was getting worse.  OH NO!!  Neuroapathy....what they all say might happen.  It feels like when your leg falls asleep, and it is just beginning to wake up again..  And you feel like you need to shake it to help get the blood flowing.  Well, I felt that way all night.  So much so that Michael had to leave the bed and sleep on the sofa because he couldn't sleep.  Even when I did drift off, he said I was twitching all over.  I felt so guilty, but he wouldn't let me sleep on the couch.  I didn't sleep very well, and just worried (I am good at that) that this might really be happening.  So I try to practice that thing I said I would...trying to cope.  I laid there and envisioned my discomfort, and imagined that it dissapates.  And to focus on my breathing, and mantra, and release.  So I did get some sleep. 

I woke up this morning with the sensations gone...so I hope that I have evaded the neuroapthy monster another round. 

And, well, as we all know, Eve on no sleep makes for an unstable girl.  So I am still crying.  My outlook e-mail crashed today while I was at the clinic...just after I had constructed a long e-mail to a co-worker who was presenting something for me because I couldn't be there.  I lost the e-mail, so decided to call her.  And, well, I should have waited to call her until after the serious frustration subsided because I ended up just crying when she answered the phone.  So professional.. But we chatted, and she gave a great presentation. 

And then I got to finally talk with the woman I'd been wanting to talk to for awhile, just to hear her story.  And she's got it rough.  My situation is cake.  So pull those boot straps up and keep marching old girl!!! 

I think I just need to take it one day at a time, and not think about how much longer I have.  That should help, right?  And besides, we all know how fast time flies. 

The picture above is one that my parent's took of me when I was young.  I wanted to go outside and play in traffic...the world was going by without me!!! But when they said no...well, the picture speaks a thousand words.  I was channeling that little girl yesterday. 

Vanity? Illness? Milestone? Who knows...

So we have noticed lately that my hair is getting thinner.  I keep asking Michael every day...like I am seeing it wrong, and it is really not happening.  Does it look thinner to you today?  He always just nods yes and kisses me on my forehead.

I don't know, it is not like this is surprising or anything.  We've known from the start that I will lose my hair.  It's just funny--the way it's happenend.  I remember thinking after my first chemo, when I didn't lose any hair.  I thought, wow, maybe I'm different, and it won't happen to me.  And then it did.  And now that I've cut my hair short, I've consistently noticed hair on my pillow, and on my shirt.  But it is still there.  So I thought, hey, I'm not going to go completely bald.  Until I start noticing that there are bare patches.  And the length that I have it accentuates it.

So tonight I asked Michael to shave it closer to my head.  I thought if the hair is shorter, it will just lay down on my head instead of sticking up, and cover up the bare spots.  It'll look more like I am not going bald.  And so he did it.  And, well, no matter which way you cut it, it is hard to cover up the fact that yes, indeed, I am going bald. 

I've been pretty stable these past couple of days even though today, Friday, was the first day I've felt normal again after a chemo round.  Normally this has happened on a Tuesday or Wednesday.  But emotionally, it has been okay. I've just been tired and head-achey.

So tonight when, at one moment I was fine, and looking forward to trimming the hair, I find myself crying in front of the mirror while Michael takes the scissors so lovingly to my stray hairs on the back of my head. I don't know where these tears come from some times.  This is NOT a surprise.  And I still have more hair than I've expected to have. So I don't know.  It doesn't seem like vanity, it just seems like this hair thing is an outward expression of my illness.  Which is so weird because the more hair I lose, the smaller my tumors get. 

There I sit...crying in the bathroom, and I hear my phone ringing.  And it is Michael's parents.  I try to talk to them, but can't.  So Michael takes the phone and says we'll call them back in a bit.  And then I just cry in Michael's arms.  Ahhhh....there I go again.  Vomiting tears.  So strange. So strange. I know I keep saying this, and I guess I do so because I still don't know what to make of it.

I know for certain that I have cried more these past several months more than years past combined.  But once the crying spell is over, it is just that.  Over.  I don't feel despair, or depression.  None of that.  Exhausted at times, for sure.  But not depressed.  Even lighter at times.  So that makes me think that this is all okay and just a part of it.

Anyway, this post, well, I don't even know where I am trying to go with it.  Other than to say that my hair is really short, and a lot of the way gone.  I loved talking with Michael's parent's tonight (once I regained my composure).  I am still getting used to the fact that I have these new parent's who love me like their own.  It is nice.  And since then I've gotten calls from my brother Krishan, and my uncle Jim.  For someone who doesn't like talking on the phone, I've had a pretty great night.  A walk with the dogs and my sweetie, delicious, healthy food, love, and catharsis.  Now it's time for that good book....Good night!

photo from www.istockphoto.com

It's been way too long...

Everyday I wake up and think I need to spend some time on this site to let you all know how I am doing.  You all have been SO amazingly supportive and loving, and the last thing I want is for you to worry about me.  So, the answer to the question...how am I doing?  Well, I can safely say I am doing well.  Now, if you asked me if I am ready for this to be over, ...you can bet I'd say FOR SURE! 

I've now completed 5 chemotherapy sessions and countless vitamin IV C therapies.  I keep going back to what that chemo nurse said to me on my first visit.  Keep a diary...it will help you know when to expect what.  Well, I have learned that there is no expecting, and no set rules as to how I will feel and when.  Round 4 of chemo was the easiest round for me as far as side effects.  I thought I just might be getting used to it, or resigning myself to it.  But I realize after round 5 that, well, again, there are no rules.   The good news is that in round 5 I had my period.  This is not good news really, it is great news!!  My female parts are still working.  But with that joy also comes heart ache as the hormonal roller coaster on chemo is a tough ride.  yin and yang.  That is the one thing I have come to expect.  Joy and sadness, hard work, and ease. 

Probably also because of my menses, my blood counts have officially dropped to anemia levels.  And I feel it.  I am tired.  And I fatigue easily.  Sunday (and for most of Saturday actually) I didn't leave the house once and relished in the joy of my living room, a book, good musics, my sweetie, and the cold that invites the cozy.  I took lots of baths.  Got a massage.  And really just was. 

And that just being is an interesting exercise in itself.  I have always been an on the go kind of person.  I don't remember being so decadent as to lying around most of the day, let alone ALL of the day.  For two days at that!  But this is forcing me to slow down.  And see what happens.  It'll be interesting if I try this slowing down thing when I feel good.  I wonder what will happen then? 

Today I couldn't wait to get home and lie on the futon in the middle of my living room.  I had intentions of being at work today.  We had the holiday luncheon, which I made by skipping my hyperbaric treatment.  I was overwhelmed today by what my parent's have created out of nothing.  They are healing people worldwide with the help of this amazing team that was all congregated in one room today for our celebratory lunch.  Blew me away actually. 

After the lunch I was faced with an afternoon of consults.  Booked solid from 2-5:30.  And I suddenly got all panicky. I can't be here that long!!  So I bolted.  Literally...I thought..I can make it home by my first one.  And i did.  And I worked all afternoon, feeling accomplished, while lying down next to my warm dog on the floor by the light of my tree, the rain drizzling, and the cold keeping me wanting to snuggle with a blanket. 

Now, as I write this, I kind of laugh.  Because so much has happened these past three weeks that I've been silent.  I'd love to write all about these up experiences because there have been many!!  Again, I can't help but think that I don't think my life could get any better if it weren't for this illness.  I've been wrapped up in the magic of my female friends in an amazing healing day, I've enjoyed Thanksgiving with family, I've camped with my beloved in the beautiful hills of North Georgia, I've celebrated his birthday for a week, I've had friends warm the home the way friends know how to do perfectly. Those same friends gave Michael the birthday love he deserved, being the caregiver these months.  I feel surrounded in love. 

And then I've had problems with my port, and nausea, and fatigue, and stressful situations at the clinic, and overall crying fits. 

This is such a strange strange time. 

And I had a stranger approach me today at the clinic and ask if he could pray for me.  Well, I guess he wasn't a stranger, because I've seen him several times before.  But he said he's been seeing me here, and was drawn to pray for me.  An awkward experience in my mind, that really, surprisingly wasn't so awkward.  It was like my defenses were down and when he came over I was just focusing on the parts of his intentions that were good and loving.  And so he prayed for me, while holding my cold hand--warming it.   I have never thought that Jesus Christ died for my sins.  And that God is a puppeteer that controls my life.  I have also never appreciated people pushing their religious views on me.  But strangely, in that moment, it felt peaceful.  And I just let be what it was.  A man wanting to speak from that place in his heart that was good, kind, loving, supportive, courageous, and strong, to all those places in my heart.  Love is the great equalizer.  It is a universal language.  And then it was over, and he sat back in his chair.  And it was sweet.  His name was Joe. 

A few minutes later a woman is brought in the clinic by her daughter and husband.  She is new, and is not doing so well. I don't know her story, but she's obviously very sick.  She's in a wheel chair, and tears up a lot.  Her husband...is...so...so...so...kind and loving to her I can barely watch it for the tears it brings.  Her daughter too.  Love, is so strong an emotion that it brings such joy, but can also rip you to pieces when you see someone you love suffering so.  Strangely, I wanted Joe to pray for them to. 

So these are the ramblings from a girl who's not doing so bad.  Yes, I have moments where I want to scream and say YES, I can be in a bad mood, and mad that I feel crappy, and I don't want to put on this happy face. And I do.  But mostly, I feel okay with putting on this happy face because life is good.  And it could be worse. 

I know I get sappy saying this over and over again.  And I just read Secret Life of Bees which was the absolute perfect book to read right now.  But love truly conquers all.  And I wish there were more words to explain love.  Like August said in the book...we use the same word for the way we love coca-cola and peanuts, as we do when we love our mother. 

So here's to sending lots of love to you all.  And hopefully it will be infectious and you will send love to all those who you love, and they will to them.  (Sorry Bob if this is too gushy...)

I just finished this post and went looking for a photo.  I typed LOVE in the google image search and found the image above.  How perfect is that for what I just said?  Which ended up leading me to this website:  http://www.owningpink.com/  Nice. :)

The Cleaning Fairy!!!

Guess what I get to come home to today?????  A CLEAN house!!!!  I am so excited.  It has been increasingly harder to keep up with everything.  And I hate having a messy house when I am not feeling well.  Mom and Dad have been traveling a lot lately to the exotic world of Dubai, and generously offered to send over their cleaning person today to our house instead of theirs.  :)

I just love my parents. 

And, even better news, I just heard about this service http://www.cleaningforareason.org/ who will send out a maid service while I am undergoing chemotherapy.  What a blessing. 

So I take happiness in the little things. 

And, Mom was saying how she missed the photos on my blog.  So here's one for you.  Maybe I'll go back and add photos to the others. 

The Purple Train

Check out what my dear dear friend Karen is doing!!!!  http://teampurpletrain.blogspot.com/

It's funny that I didn't notice this before...but is purple the color ribbon for lymphoma and leukemia patients?  ...purple?? my favorite color?  How appropriate!

Karen, you are amazing.  Your heart is huge and I just LOVE you!!!  Thanks for raising money for a worthy cause. 

The Rest of my Day

Well, I got that previous post done just in time for me to make it to my Progressive Medical doctor appointment.  While I was in there, I guess the nurse talked to other docs and when I got back to the IV room she told me I really should try to get to the surgeon's office today so that they can check out the port.  This got me very scared that something more serious might be wrong.  I kept asking them what they thought was the problem, and they just kind of brushed it off.  But still, I should go. Even Andre, the tech that always makes fun of me when I cry came up to me and actually comforted me.  And also agreed that I go to the doctor just to make sure it wasn't anything serious.  

So I call the surgeon and leave a voice mail.  While waiting I get in the hyperbaric chamber and just let my mind run away with me.  What if it is a blood clot, and it breaks loose and I have a stroke?  What if the port broke and I have to get surgery again?  Not to mention the fact that my chest was feeling bruised and swollen from all the sticks that morning.  I wasn't looking forward to anyone going in again and checking it out.  I cried and cried.  And this was supposed to be one of the precious good days I have.  Dammit.  One more good day given up to this illness.  

The surgeon's office calls and says he can see me if I can hurry and get there.  So I hurried.  And I got there.  My mom wanted to be there with me. As soon as she heard, she dropped what she was doing and drove down there to meet me and give her motherly support.  I was much closer though.  And was seen right away.  The surgeon poked and prodded, and sure enough...he GOT IT!!  YES!  I can't tell you the relief I felt at that moment.  I cried tears of relief.  The stress level had been rising and I was trying so hard to hold it together.  But when I saw that beautiful red blood...wow, I haven't felt that relieved in a long time.  You wouldn't tell by the tears, but you know...

Mom met me as I was leaving Kaiser.  We stood there and hugged in the sunlight.  A long, loving hug where she just let me sob on her shoulder and get it out.  I felt totally fried.  Totally fried.

She'd driven all this way.  And suggested maybe some therapeutic shopping to get our minds off this. The mall was just down the street after all.  I typically go home and work on the good days.  But I was so drained.  SO, I spent the rest of the afternoon with my mom shopping.  It was so nice.  She bought be two cute hats.  And I found the sale rack at INC and found some cute tops!   I am not much of a shopper at all, but somehow today, it was just what the doctor ordered.

So here I sit.  Headache, eyes puffy. But I am home, and I have the needle in my port. And I don't have to have surgery tomorrow. My mom showed her mother love again. 

I have this image of a video game character in which I have a battle axe in my hand and I just keep slaying beasts as they approach me.  One gone, then another.  I am just hacking my way through this adventure.  I wonder what the next beast will be?

Port Woes

So every Monday I come to Progressive and the nurse accesses my port with a needle.  This stays in me the entire week--tubes all taped to my bandaged chest.  I can't shower, Michael's been washing my hair in the kitchen sink.  But this does keep me from having to be stuck every single day.  It is better for the port too. 

I get respite during the weekend.  I take lots of baths, and can sleep more comfortably. 

So this morning I come in, and three sticks later the nurse gives up.  She can't get a blood return throught the port.  I can tell that she can get the fluids to go in as I can taste it immediately.  But no blood return.  And if you don't get blood return, you can use the port.  So I am back to the IV in my arm.  She assures me that it might have just been a bad day.  But I am so worried that there is something wrong with my port.  I DON'T want to go back and get surgery. 

Well, that is the news for today.  Good things about not accessing it...I can take a bath tonight!  And this also makes me appreciate how much I love having the port.  When it is accessesd, my IVs are like cake.  I don't have to keep a stiff arm, I don't have to worry about ruining my veins. 

I just hope she can get it tomorrow!

Mania??

Some many call it that.  But today I am feeling SO good.  It started Thursday night.  I couldn't stop bopping around the house.  Dancing, laughing, smiling, hugging and kissing my sweet husband.  I think I just really appreciate the good these days. 

Yesterday for some reason I was a bit weepy--again...that crying that just needs to come out.  I wasn't sad, just weepy.  Michael worked until midnight last night trying to fix an unruly instrument so the tech wouldn't have to re-prep samples. So I unexpectedly had the night to myself.  I sat on the back porch, curled up in a soft blanket and got lost in a book for hours.  It was delicious.  And then I got caught up on Top Chef--a guilty pleasure of mine.  Michael found me curled up asleep on the couch. 

And this morning.  Oh my goodness how beautiful it is outside.  It is the perfect fall day.  I made breakfast and we ate on the porch, with nothing but the bursting beautiful colors of the trees surrounding us.  I love our lot, it is lush and private. 

So I am happy.  Beaming actually.  Feeling great.  And I hope you all are finding joy in this beautiful day. 

Sending lots of love to you all!!  I feel like I've got a lot to give right now. 

Going with the Flow

So, it's been 5 weeks and 3 days since we've been married.  Making that 4 weeks and 6 days since I've started treatment.  That's enough time to get down the routine, isn't it?  I am feeling more comfortable with this ebb and flow as I am seeing it move for the third time now.  Granted, each time has been different considering which day I was most nauseated, which day I was most emotional, which day I was most tired.  But for the most part I am seeing that starting the day of chemo (wednesday) through the next Tuesday I am pretty much not myself.  The details of the "not myself" have been different each time. Today is the Tuesday after and this morning was the first morning that I have begun to feel somewhat normal again.  Not there yet, but I am dressed in business attire, make-up on, hair done (haha, what's left of it anyway), and sitting in the hyperbaric chamber for the final minutes before I rejoin the world and go down to Emory to listen to Ken Cook of Environmental Working Group discuss toxicity in our world today. 

So I made it through another round.  One thing we've learned is that as much as we are THRILLED that I had my menstrual period this week--that combined with chemo makes for one tough emotional time of it all.  I barely remember Friday as I cried my entire way through it.  Saturday left my face looking like I was donning bright pink eyeliner.  Sexy.  What I did do Saturday morning was make a cup of coffee and man alive....that stuff is like gold sometimes.  I enjoyed every last sip--spiked with manuka honey and soy milk...ahhhh......it's the little things in life.  But that coffee made me feel like a million bucks.  By 2pm Michael and I had cleaned the house.  And not just picked up...cleaned!  The windows were open.  The day was BEAUTIFUL!  It felt good.  The coffee lasted just in time for me to sit and read a chapter in the Power of Now before the amazing Meechi Peachie came over to give me one of her energy moving massages.  She left me in a puddle to nap, and upon rising, I took a hot steaming aromatherapy bath.  It was so nice.  I was ready for bed at 8pm. ....  After going to bed though I realized I just couldn't take it anymore and had to get up and do an enema. I kept obsessing that my bowel was making me toxic... Boy my life sure has changed these days.  ...

So no point in explaining in detail my life these past days.  I just basically have to live through the yuck times.  I want to crawl out of my skin most times and hang my self up on a hanger until it is over.  The nausea was bad this time.  It wasn't particularly nausea related to food, but to situations.  I did the hemi sync while nauseated and now can't stand the thought of doing it again right now.  TV makes me feel that way a little.  Being in my house did that yesterday.  I keep trying to just sleep so that I will not have to think about being.  But, I can't crawl out of my skin. And I do need to experience this.  So I am just grateful for waking up this morning and feeling somewhat better. 

I am looking forward to going out in public today. 

Even though it is raining. 

Michael has been amazing as always.  He's cooked, cleaned, done housework, rubbed my aching legs, held me while I cry, made me laugh when I need it, and generally has been the best mate I could ever ask for. 

I really appreciate all your love and support through this.  And for listening to me babble.  Onward and forward, right? 

Much love to you all. 

Daily Mantra

I will only need 4 rounds of chemotherapy (8 treatments).
I will not need radiation therapy.
I will not go into premature menopause.
I will learn how to keep my body healthy so that this will not happen again.

I think this every morning when I wake up.  And several times throughout the day when I am feeling down. 

The allopathic medical treatment of Hodgkins lymphoma is very successful.  90% cure rate.  This is incredible.  The standard therapy is just that, standard, and has proven itself.  That treamtment calls for 6 months of chemotherapy (12 treatments), and six weeks of daily radiation.  My tumors are spread throughout my neck, cervical lymphnodes and chest.  So this means pretty widespread radiation.

Side effects of chemotherapy--heart damage, lung damage, peripheral neuroapthy, loss in libido, and premature menopause. 
Side effects of radiation--increased risk for breast and lung cancer, and thyroid disease. 

BUT, these therapies treat what you come to the doctor to treat.  Lymphoma. 

We've made the decision to combine complementary therapies to hopefully reduce side effects, and reduce duration of chemo, and avoid radiation. 

It is not recommended by my oncologist, although he knows I am doing it.  It is not covered by insurance and will cost about $15,000. Not to mention the $6,000 that I have to pay to Kaiser for what is not covered.  The complementary treatment is expensive, and also not proven effective via large double blind placebo controlled studies that everyone wants.  It is not hocus pocus though, and is backed by several scientifc papers, and MDs who are using it in their cancer practices. 

My heart believes it will work.  That is why I wake up every morning, make my vitamin shake, pack up the computer, and head to Progressive Medical where we are taking a gamble.  But mantra in mind...and brain intact in thinking that I am fighting this beast in a gentler way makes me feel like it will all be worth it.  When I get down about expenses, these strange feelings are evoked. ... like how could I put a price on my healthcare?  My life?  What is it worth?  Is it worth working a few more years before Michael and I can buy land in the mountains and make a living there?  Is it worth perserving my fertility?  Is it worth preventing future cancers?  Well, I can say yes, it is.  SOOOoo the mantra:

I will only need 4 rounds of chemotherapy (8 treatments).




I will not need radiation therapy.



I will not go into premature menopause.



I will learn how to keep my body healthy so that this will not happen again.

It's been awhile...

So yes, I know...it has been awhile.  I've completely skipped over talking about my second chemo experience.  Really nothing other to blame it on than pure laziness. I am totally lacking discipline these days.  I have found myself succumbing to the couch more often lately.  It is amazing the magnetic draw this green mammoth has on me.  I didn't think discipline was something that I'd have to work on during this time.  But I need it so that I can sit back and look at this time as a time of growth, introspection, and, well, not just a blur of blah. I don't want to wither away this opportunity for growth, and I feel like I am struggling a bit with that now.  That was the one thing that I really looked forward to when I heard about this diagnosis.  I thought I'd have more time for working on myself.  But between doctors appointments, and trying to work, and fatigue. I am finding the space making absent.  But the thing is....there IS space. I just need to take it. 

Attention span-- is short short short. For example, today--I have to take Tylenol every six hours for the next two days to counteract the side effects of one of the chemo drugs on my lungs.  First of all, I couldn't remember where I put the darn bottle from last time.  You'd think I'd have put it in the place where the medicines go.  Well, not there.  So I went to look another place, but I found myself several minutes later doing something completely different!  And then I remembered I was on a path to find the pills.  So I realigned and still couldn't find them.  So I went to look for my phone to call Michael, when I found myself getting side tracked again with a paper I found on the table next to where my phone was. I completely forgot about the tylenol and the phone call until I sat back on the couch.

So my brain isn't crystal these days.  Some days are better than others.  I find tasks at work difficult--reading most specifically.  I have been having up days though.  So I know my brain isn't ruined.

I've also been side tracked with trying to get this book finished for book club.  It was a very long mystery novel. A kind that I don't normally read.  But I felt like I needed to get it finished because I've missed these past two months.  So, to garner the attention span to get deep enough in it for it to be engaging was tough.  And then I had three days to finish 400 pages.  Well, I almost did it, and went to book club and really enjoyed my time with the ladies.  :)  That was worth it.  But I am really thinking now that I am going to spend my time reading books that I really want to read.  AND, most importantly, finding some way to find a good UPLIFTING book.  We've read nothing but downers for months now, and my personal reading hasn't produced any uplifting books either  So I welcome any suggestions from you all.  I am not looking for anything overly religious. Philosophical and introspective, yes.  Just good, feel good, inspirational books.  Memoirs are always nice.  I might pick up 10,000 white women.  I heard this was good.   

Well, as I read back on this it kind of sounds like a whole lot of complaining.  Today was probably a bad day to write this post as it is the first day of round 3, so I am all doped up on anti nausea meds, steroids, and chemo.   And not feeling the best. Not to mention that my hormones are a little crazy right now. I also got really hungry on my way home from the infusion center and in some crazy moment of weakness stopped and got chick-fil-a.  TOTAL Crap.  But I wanted something greasy.  And I am pms'ing, and not really caring.  And that devil voice in my head spoke so loudly saying things like--who cares if you eat this shit.  You don't normally eat this and you still got cancer, so what the hell does it matter.  Anger is not a very familiar emotion with me, but it pops up every so often.  So I ate this food, and have been feeling like it poisioned me just as badly as the stupid drugs.  blah.

Maybe I should just stop writing today because I am feeling crabby.

And now I am crying.  Shit. 
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--
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Breathe...breathe...okay.  Sometimes a cry is what I need to move through the tough time.

Let's go back a round.  Because it was very different than round 1.  I do want to talk about all the wonderful things from the past two weeks, because there have been some highlights that make my heart large.

Firstly, I got an e-mail from Dr. Hartle talking about how the full moon she saw on her drive home after our wedding, and then two nights ago so vividly reminded her of the color of my wedding dress.  I LOVE love this image.  Thank you Dr. Hartle for sending love and support, and giving me this gift that I will always remember each full moon.

Bonnie worked hard to help Jason get the photos from the wedding posted the day after my last chemo.  I sat in the IV chair at Progressive and just poured over those amazing photos for two hours. Ahh, nothing like a memory of happy times to make being at the doctor's office not so bad.  After the IV was finished, I packed up the computer, and moved my hair away from my face to get up.  And that's when it happened.  A large clump of hair came out in my hand.  Yin and yang again.  My really happy highs have frequently been juxtaposed with really down ones lately..

Andre, the tech there that is just priceless...always seems to walk in when I start to cry.  And, being a man, (not saying that all men are like this), he always gets all uncomfortable and stuff when I lose it.  He immediately began dialing a phone number on his cell phone, and then handed the phone to me saying I need to talk to this person.  He connected me with a past patient who had gone through what I was going through.  She was SOooo nice.  And it really did feel good to hear about her experience of losing her hair.  She is cancer free now.  And her hair is growing in thick and beautiful.

So it just so happened that Daniele and Heather were planning on coming over for potluck dinner that night.  And as they arrived, I said, ready to mix this party up??  How about we cut my hair?  And of course they were all game.  We ate delicious food together, on the floor of the living room.  I just love those girls.  And then Michael ran to the store and cashed in on April and Donald Earl's gift certificate to buy us a head shaving device.  SO thank you guys.  You were there in spirit on that heavy night. 

And off they went.  whew..it was quite a thing.  I've always had long hair.  I love long hair.  And I've known since the beginning of this whole thing that this would happen.  How to prepare yourself??  Hmmm....no way to.  But I can say that the timing was so right.  We created such a sacred space with love and compassion and intention.  Daniele spent a long time just brushing my hair.  Heather rubbed my hands.  Michael got the gadget all figured out.  And curtis watched.  They all took turns cutting.  And then it was gone.  I decided to go pixie for now, and I am not ready for the bald look yet . Everything in its own time.  After the girls left, Michael said.  Well, my turn.  ... and I had such mixed emotions.  I love his beautiful hair.  Why should we sacrifice both of ours??  But he was adamant, and wanted to do it.  He is showing outward support to the world for me.  And I just love that man.  So we did it.  I did it actually.  I shaved my beloved's head.  And he's got such a cute little pea head.

 

 

 

 

Good things these past two weeks:
--surprise birthday party for a friend...I made it there for the surprise!!  And then left the others to the debauchery.
--care package delivery from Becky and Pat with cool new hats and yummy homemade food!!
--weekend away in the mountains with my family...ahhhh.....THAT was medicine right there. I was SOOooo happy all weekend.
--RIN, Michael's mother CUT her hair off too!!!!!  Crazy!!!  But she looks so cute. And I love that woman.  She is so supportive and loving.
--spending time with Patty at her house.  And pouring over her amazing art work trying to decide which to pick for our wedding present!!! SOOoooo hard to narrow that down!!  She ended up giving us our shared one, and then one for each of us.  So generous, but so welcomed.
--Grandma, and her reiki.  She's been full of love and care, and spoils me with lots of reiki sessions.  Last week she came over to the house and we had a powerful session.  And afterwards she let me drift off to sleep on the couch while she just sat with me.  She is a healer and a giver.  And I am so lucky to have her in my life.
--final harvest from our summer garden..and delicious baba ganoush as a result!
--hemi-sync!!!! OMG!  have you guys heard of this.  This is something you listen to to help train your brain waves to relax you and eventually teach you how to cope with life stressors.  I LOVE this thing. I havent' felt this relaxed in as long as I can remember.  I am hoping to use this each time I am in the hyperbaric chamber.
--I have mailbox fairies!!  Linda, D., Fauna, and Bonnie and Rob.  ...you make our box happy. thank you guys.   

And that diary I was supposed to keep....

well, in a nut shell, the chemo didn't seem to get me down as badly this second time.  I had bouts of insomnia, especially the first night.  But the nausea wasn't as bad.  The fatigue...not as bad.  (although don't ask me about it today!!!  my memory is tainted a bit).  I never got to feeling AS good on the good days as I did last time, but emotionally I was much much more stable.  I think hormones really are playing a factor in how I handle all of this.  So we will see this time.  One thing I've learned. ...there are no rules.

So, things I'd like to add into my life right now...
1.  hemi-sync
2.  reinstate my yoga practice.
3.  read uplifitng books
4.  work with chakra meditation and trance dance
5.  clean house.

Well, wow! For low attention span, I guess I spouted off a lot here!  Feeling strange today.  So thanks for putting up with me.

love to you all.

Wedding Photos!

Wedding photos are up!! The first one is a short highlight slideshow. The other...well take a seat, get a cup of tea, and enjoy!!

http://weddingsbyjason.net/slideshows/em_wed/
http://www.weddingsbyjason.net/darkroom/proof/?client/em_wed
 

For Hilda

I barely knew her.  She was there the first day I came to the clinic for my vitamin IV.  Her aura..felt sweet, and good.  She sat and told me of the good care all of us were getting here.  But otherwise didn't say much.  Her cheeks would get real rosy with the IVs.  She was there the first several IVs I had.  We all begin to know each other...seeing as we are all there everyday.  And each time a different family member would come with her.  She had such love surrounding her.  You could tell she was greatly loved.  She was a farmer, and more recently had gotten into organic farming, and the slow-food movement. 

I hadn't seen her in about a week, and today I found out that she passed away on Friday.  55 years old. 

I didn't know her very well, but I'll always remember her sweet rosy cheeked face, and the love that surrounded her.  The news makes me very sad.  Strange how we can feel that way for perfect strangers.  My heart is with her family who cared so much for her.  May they find solace in each other, and in knowing that their mother, friend, wife, daughter, made a difference in the world.

photo by:  http://www.flickr.com/photos/magdalengreen/

Dear Diary

The chemotherapy nurse told me I should keep a diary to help me keep track of my symptoms during these cycles of therapy.  I can see the usefulness in this...a way to help cope during the hard times, and to know that there is a ray of sunshine to come soon!! 

So I have this journal.  And thought I'd put my diary entry here.  Now I know in a typical diary you are supposed to write everyday.  I hope I haven't waited too long to write and have forgotten some of the deatils.  Let's see...

Wednesday--chemo (I already wrote about this part).  Purely exhausted from the emotional trauma of it all. 

Thursday--enema/coffee enema a.m.  Work, feeling good. 

Friday--first nausea pill in a.m.  IV, hyperbaric, home to sleep.  Up for dinner and walk.  Most nauseated that evening.  Emotionally good.

Saturday--very fatigued.  Nausea pill in a.m.  Stayed home all day.  Had lovely visitors!!  Emotionally good. Slept, slept...

Sunday--enema/coffee enema.  Felt worse after the enema's.  No nausea pill though. Mostly feverish and heavy.   Krish and Augie came over and helped with some house stuff.  I love my brothers!!  Fatigued, lazy.  Emotionally okay.  Slept well.

Monday--morning at the clinic.  Fatigued.  Nausea gone.  Starting to notice that I am pretty emotionally unstable.  I look ragged--dark circles under the eyes.  Don't have energy to fix hair or make-up. Crying too much anyway for that.  I sleep like the dead in the hyperbaric oxygen chamber.  Go to work in the afternoon and hit a wall after only 3 hours. I get this e-mail from my aunt Patty telling me about a post she wrote about me on her blog.  SO increbily touching that I can't even read it completely at work because I am so thin. You should read it here:  Fierce Grace  It is very touching and beautiful.  But I had to save it for another day.  It was too much for me.. I don't know how that speaks to fierce grace!!  I went home and slept while Michael made the most delicious dinner.  And 9 pm came and I said..okay..Bed time???  And he looked at me bewildered, but came to bed to lie with me while I slept.  I just love that man of mine. 

Tuesday--worst morning yet.  I can't stop crying.  I am at the clinic and I can't even stop crying when the nurse tries to hook me up to the IV.  They give me some extra magnesium and some herbal anti-anxiety pills.  The magnesium helps.  Then I go to the hyperbaric oxygen chamber and cry non-stop in my private escape.  It was a strange cry.  Not the kind where I was crying for a reason.  It felt like my body was trying to get rid of something...like vomiting...but with tears.  It was a deep sob.  Fierce grace alright!!  That lasted all told about 2 hours.  I was left numb.  And raw.  And totally exhausted.  And then I went to work.  Bad idea.  Anytime someone came and talked to me I'd cry.  I'd cry if someone wasn't talking to me.  I was like a leaky faucet in need of a plumber in the worst way.  I lasted for about 3 hours.  And went home and passed out on the couch. 

Now, Tuesday's are the days that I am getting the glutathione/lipoic acid IVs.  These are different from the vitamin C IVs.  These are potent antioxidant IVs.  And I truly felt that this along with the catharsis was my turning point. 

Wednesday morning I woke up and began to remember what it was like to feel normal again.  I had glmipses of happiness.  of hope.  of energy. I went to the clinic to get the IV and hyperbaric.  I was going to go home and work, but I went home and slept for almost 2 hours.  I woke up feeling refreshed and ALIVE!!  We had dinner out with a friend--like a real person!  Out...us!  Out of the house doing something fun!!

So that was it.  Since then I've been feeling GREAT!! I keep telling Michael how good I feel. WOW! I feel good today . yay!!  It feels good to feel good.  ahhhh.a.....h  yes.  I am smiling.  And brushing my hair.  And off the couch! 

Thursday I did the clinic and work, and it was fine!! Thursday night we had our first friends over since being married.  It was lovely.

Friday I worked ALL day!!  And felt good!  And productive!  We went to the haunted house that night, and lapped up all the yummy goodness that is friendship.  I lathered and bathed in the love from that.  Whether they knew it or not, I loved just being with them. 

Saturday Michael and I had the most romantic date day up in the mountains.  Being silly at the pumpkin patch in the fridgid weather.  Hiking.  And then coming home to delicious dinner and Coraline--a great movie!!

Sunday we got to see new beginnings.  Cleaned and purged the spare room (desparately needed!!) with mom.  And ended the day with a lovely dinner with friends hearing of travels and good times. 

So that brings me to today.  I feel great.  I am happy.  And I am about to head to the Kaiser office to check my blood counts to see if I can begin this whole cycle again on Wednesday. 

Good news is, I can feel my tumors have already shrunk!!  So good things are happening. 

love to you all!!

Update post chemo

Michael has proven time and time again that he is in it for the long haul.  Everyone who knows my sweet husband knows that he is inherently a good care giver.  I'll never forget the first Christmas that Michael spent with my family.  We all went to Cirque du Soilel.  In the mad dash to the cars after the performance, family was splitting off this way and that, trying to decide where to have dinner, and who should ride with who.  It was a bit chaotic, and when I looked to see where Michael was, he was in the back making sure my grandmother wasn't left alone. (Even though he thought her name was Ruth at the time!) They were cutting up, and it was then I was reminded again that he truly is a gem of man.  His heart is pure and kind and gentle despite the silly antics that he puts on.

And so, to no suprise, he has been fantastic to me this week.  It is a tough week for both of us.  Coming down from the high of the wedding to waking up during the night dealing with this situation  The night after the port was put in he had to wake up each time I needed to lie down and sit up..  He'd get me pain pills, and he'd sit with me rubbing my back as I cried.

He scrubbed the bathroom because he wanted to make sure there was no mold anywhere to cause me any additional problems.  We also needed to be clean for the start of the PBsEB experience (for those of you who don't know...the Patty Bralley Enema Bucket kit).  Sorry if this is TMI for you all, but enema's and coffee enemas are a part of life now.  BTW...Great Kit Patty!!!  I think you should market this puppy!

Wednesday morning we got up and quietly got ready to go.  Mom called just as we were walking out the door to send love. We barely said many words to each other on the way to the infusion center.  I asked him if he was scared, and he said yes.  And he held my hand, and we drove in silence.  I lost it when I entered the waiting room to sign in.  I couldn't stop crying.  The women at the desk looked awkward and said "it'll be okay Ms. Bralley"  and Michael preceded to say, it's Mrs. Cook now!!  Which made everyone ooh and aahh, and took my mind back to happy things.  He told stories about the wedding.  He's got this way of lightening the situation. 

So I got weighed, blood pressure and temp taken. I can't tell you how many times I've done that in the past two months!! And then we went back.  The surgeon left the port accessed so they didn't have to go in to a fresh wound.  The nurse was nice and talked softly, which I so much appreciated.  Her demeanor was calm.  That helped. But I still couldn't stop crying.  Michael was right there. Holding my hand. Looking into my eyes.  Telling me it was going to be okay.  I was...just..so...scared...

And then we started.  The nurse went through each of the 4 drugs one by one and told me all of the common and rare side effects.  If that isn't enough to make you want to run screaming out the door--well I don't know what is.  Enough talking...the nurse started the first drug.  The port was working beautifully.  We had a good blood return.  And then we did the next one, and the next, and then the next.  4 drugs, 3 hours.  Lots of tears.  Hope smattered in there that this will all be some bad dream soon.  Mom tells me to look at these drugs not as poison, but as healing potions.  That helps..but it hard to situate the mind that way.

We came home to find flowers waiting at the back door from Mom and Dad.  I talked to my mom later to thank her and she said, she wished she'd thought of it, but it wasn't her.  It was then I realized that yes! I really do have two sets of parents who love and adore me.   So thanks Chuck and Rin for the beautiful sunflowers that still bring sunshine into our home.

And then I slept. And I slept well that night. 

Thursday morning we woke up, I did my PBsEB. And felt pretty okay.  So I got dressed and went to work.  I worked the whole day (almost).  Felt a bit overwhelmed, but we've got good people there, and things are getting taken care of.

The best news came from Dr. David around 4 pm.  We decided to have Metametrix draw and handle my enzyme test to send out to Quest Diagnostics.  This is the test that I needed to pass in order to get the Vitamin C IVs.  The one that Progressive said I failed last week.  Well, Dr. David came to find me, all happy..and said you've got to see this!!  NORMAL!!!  normal.  normal.....aahhhhhhh....thank the heaven and stars and earth below my feet.  I can do these Vitamin C IVs.  YES!  I am So hopeful that these will decrease my duration of chemo, and completely eliminate the need for radiation.  Hopeful thinking, but that is where I need to be right now.

So Thursday wasn't so bad.  :)

Friday I went in to Progressive for a Vit C IV, hyperbaric, and then came home to sleep.  I could feel the magnetism to the couch growing stronger.  I get up and about for awhile--I did the dishes...and then I just want to lie back down again. 

Last night was nice.  We went for a walk--something that is important for us to do everyday.  Michael cooked a delicious, healthy, organic dinner.  We watched Stargate and thought of Dad--SciFi Friday!  And then curled up in bed to read.  Michael got a new nintendo DS lite game from April and Andy for the wedding, and he's been enjoying it so much. 

The nausea hit out of nowhere last night.  Fortunatley there are pills for that.  And my sweet husband, right there with the trash can (which I didn't end up needing) and a cold towel.

So that brings us to today.  I can't remember that last time Michael and I had a weekend where we had no plans.  We have SOoooo much to do around the house and we are usually so busy, we never get to it.  Now we are home, and I don't feel like doing a thing but lie down.  Oh well..I am trying to just let that go.

We thought that maybe I wouldn't feel so lazy if I just stopped being lazy.  So we went for a walk, which felt good.  And now, here I am back on the couch.  ....ahhh..oh well.  He is out and about running errands.  So atleast there is that. ;p

So so far the chemo hasn't completely knocked me out.  This is good.  We can live with this if this is the worst of it.  It would be nice to know that was true.  Hopefully all these other lifestyle things we are doing will help keep me healthy and with less symptoms.

Sorry if I just blabbed your ears off--or tired your eyes out...I guess when I finally sit down to write I just spill it.

My heart is also thinking of all the others out there struggling right now.  It is a heavy time for SO many people I know.  My love goes to the Sefic family who just lost an amazing lady.  To my grandmother, and to all the others out there, you know who you are (I won't out you unless you want me too!).  I wish everyone peace, love, and health. 

photo by Tijana Sefic

The roller coaster ride

So, I got the port put in today.  I was full of nerves from my last experience with the bone marrow biopsy.  I think I also lost it as I was waiting in the waiting room because I felt like this is really it.  This is no game, and we are starting.  Tomorrow I get my first chemotherapy treatment.  I have to say, it wasn't as bad as the bone marrow biopsy...but it was a close second.  This time I was saved by Prince Valium.  So that helped things. 

What a crazy roller coaster road of emotions.  The wedding weekend was ....  I can't even put into words the joy I felt.  Yes, yes, definitely a peak experience time and time again.  The blessing way, the lovely rehersal dinner, bonfire, drumming, dancing, laughing...The easy going Saturday morning with the women in my life bustling like bees all around primping and preening.   I remember so vividly sitting in the upstairs of the cabin with my three bridesmaids doing each others hair and make-up while my mom sat so sweetly on the bed.  Girl talk.  Female bonding.  The sky was vivid blue, the windows open with the view of the mountains, and the breeze blowing through and cleansing us all.   And then moving to the next room with Michaelle and Lia doing the same thing.  Lia is right, commune life has its appeal. 

The wedding was SO perfect. I can't think of a single thing that went wrong.  Michael was SO handsome, I couldn't keep from kissing him constantly.  I almost held it together.  But who are we kidding...we knew I couldn't make it through a wedding without shedding some tears.  The weather was perfect, the setting was perfect, the land was magical...in fact the whole night felt like a fairy tale. 

I loved getting to see friends I haven't seen in awhile---if even only for a second.  To hug them, and connect.  The family who came to town just for the event...ahhhh....family is a GOOD thing. 

Our first night in the wedding cabin on Neverland was by far the most romantic night of my life so far.  We walked in the cabin, to find what seemed like hundreds of candles lit.  Music was playing, the full moon was out.  It was a night I'll never forget. 

Sunday was delightful getting the last seconds of love from all the visiting guests. 

The weekend was SO full.  My reserves are full.  My love and joy meter was full.  And what more could I ask for before I embark on this next journey. 

Monday we slept in.  Curtis was pooped too and didn't even bother us to get up!  Michael and I took the day off work to be together.  We got my blood drawn again to just double check this enzyme deficiency that might keep me from being able to get the Vitamin C IV's.  Then we headed to the clinic to get an IV of some good juju...glutathione and lipoic acid.  We ended our honeymoon by going to the Dekalb Farmers Market and buying all organic produce and grains to start our new lifestyle on the right foot! 

And then...as par for the course...I didn't sleep a wink last night.  I had a doctor's appointment today and for some reason, that is a sure fire recipe for insomnia.  I also started having this real pain in my neck...like the kind I had in early August.  And sure enough, when I woke up this morning, my neck had gotten worse.  Puffy and painful. 

So yes, it is time.  We are to get this ball rolling.  We decided not to wait for the test results for the enzyme deficiency issue.  Even if they were wrong, this vitamin IV therapy will be adjuctive to the chemo.  We are just hoping that it will keep me from having to get radiation therapy...among other things like infertility, extreme fatigue, etc...

Krishan and Augie came over tonight just to say hi.  It was so nice to see them and relive the memories of the weekend.  Mom took care of me today at the doctor for the port procedure, and then Michael came home to help lift me up from lying down, and vice versa.  They say it'll take a few days to not feel the pain from the surgery. 

I just got the sweetest e-mail from my new mother-in-law.  So yes, as I sit here on the eve of my first chemo treatment, I have much to feel grateful for.  And much to be scared of.  I just hope I can sleep tonight. 

On that note....sweet dreams to all!!! 

Confessions from the IV room

First of all....can I just say AAAaaaaaaahhhhhh!  Our wedding is in TWO short days!!!!  I am excited beyond the point of excitement.  Sometimes I feel like I might even burst.

Everything is coming together.  We are almost packed, and ready to go...although I am sure it is going to take longer than I thought to finagle everything in the car!  I've had such meaningful interactions with so many people in preparation for this wedding. I can see why it is so special. For example, Chuck, Michael's father, came to visit last weekend for the bachelor party.  We found ourselves, the three of us, sitting around the living room table tying pretty bows around the honey-flavored bee soap that will be in gift bags.  I had to just stop and soak in that moment.  There are so many more memories I have just like that one...of family,and friends, and connection, and love all filtered towards one goal.  Whew, it is enough to blow you right up!

So thank goodness for this wonderful experience.  We've enjoyed all the "leading up to part"...and now we are embarking on the "there part!"  Michael, Curtis and I head out in just 3 hours to spend the next three nights in the mountains celebrating life and love with everyone we care about. 

And as yin follows yang, now onto the not so fun stuff that is just a part of life.  I haven't updated in awhile, and so much has happened, yet as I sit here, I am unable to even give you the answer to the question "What is Next?"  We've thought we've had it figured out 10 times by now, but it changes, and it has changed again as of this morning, exactly 1.5 hours ago. The balloon was deflated again in my health care arena, and it feels real, real deflated.

The back story...
I think the last time I wrote I had just suffered through the bone marrow biopsy.  GOOD news is that my bone and marrow are cancer free!!!  And look healthy.  Whew...

By some delicious twist of fate, my dad was connected with an old friend of his that had just interviewed Jeanne Drisko, an oncologist who uses high dose vitamin C IV therapy to treat cancer.  She is working through the University of Kansas, and mainly uses it as an adjunct to traditional cancer treatments.  She has amazing success with these therapies.

Last week we went to Progressive Medical clinic, the integrative medical clinic in town, because we know that they can administer these IVs.  They also have a team of great docs who are a wonderful resources to have on our side.  The next day, I was in the clinic, sitting in the chair, with IV in arm.  bam...we jumped right in with lots of positivity.  I was surrounded by patients ranging everywhere from breast, to bladder, to brain, to colon cancer.  All had different stories, all were doing the treatment plan that worked for them..some blending traditional with non, some strictly non-traditional, some coming after being disappointed with the tradtional type. I definitely felt like the new-bie, but they welcomed me and showed me the ropes...like how to pee with your IV bag, ...etc.

Monday I went in again for the IV.  This time they had me start hyperbaric oxygen therapy too.  That is strange.  You sit in this tube for an hour and they pressurize you, and you are supposed to get hyperoxygenated.  It is relaxing though, once you get past the claustrophobic fears.

Tuesday my dad got us connected with Dr. Drisko in Kansas. We had a phone consult.  I can't tell you how lucky I am to have a parent's with connections like they do in the healthcare field.  She blocked out 1.5 hours of her time to dedicated just to us.  She educated us a lot more in the vitamin C therapy, and how it worked.  It seems pretty good, and she's had a lot a lot of success stories.  She even had one patient who's lymphoma came back.  He didn't want to do chemo, so he did strictly the C iv's.  He's been cancer free for 7 years!!

One thing we came away with from her talk is that we don't have to rush.  She counseled again that it might be wise to visit a fertiltiy specialist just to know our options.  This ABVD therapy can cause me to go into premature ovarian failure, i.e. menopause.  This scares the living hell out of me.

She also made us realize that these vitamin C IVs could shorten the chemo needed, and could probably also make us feel real comfortable with not doing the radiation.  Which is  BIG plus.  There is even the small little chance that these could cure me.

She said, get in that clinic and do as many IVs as you can.  So I did. I came back Wednesday, and am now sitting here Thursday.  It seems VERY hopeful that this treatment can be helpful.  We kind of decided that I'd take a couple of weeks, or a month to just do this, along with heavy detox, sauna, diet, and nutrient repletion before deciding about the chemotherapy.  Get all the ducks in a row...And if we do these IVs we don't have to worry about the waiting part...because it is likely killing the cancer!

And then...the bomb drops.  Hard.  And out of nowhere.  I was glowing...everyone said so this morning at the clinic.  I am about to get married, I am feeling SOOoooo happy.  Just beaming.  And as I sit waiting for my IV, the nurse calls me away to talk to the doctor.

The one blood test that you have to have done before you can embark on the C journey is G6PD.  It is an enzyme that if you have a deficiency in, and you take the C IV, you can cause red blood cell hemolysis and anemia.  It is a genetically inherited deficiency. It is usually found in black men.  No one expected I'd have a problem with this.  But guess what...I have it.  And I can't do Vitamin C IVs. 

So I loose it all over again...crying just as deeply as I did when I found out I had cancer. That deep primordial cry.  From the depths of my soul.  And it hurts...

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They want to give me IV glutathione and lipoic acid.  I ask for magnesium, and they didn't argue.  So I sat, with magnesium flowing through my veins, trying to relax and practice that damn art of accepting it.

I am feeling a little better right now.  I am trying to focus on the excitement of the weekend.  I am manifesting that feeling I had this morning when I walked in this building.  One thing I've learned since starting this, is that you get used to anything, it just takes a bit of time to digest it.

Guess I should sign off..they unhooked me from the IV a little bit ago...Time to go and pack!!!  And love and live and give lots and lots of hugs.

much love to all of you reading along. you are with me on this journey. 
photo by:  www.paintingsilove.com/.../20287/fire-yin-yang

My Story

Rewind to the oncologist visit.  We've convinced the office staff to let the whole crew come in the tiny exam room to meet Dr. Hamrick.  Only 2 are allowed in with me, but all the staff there are human too, and know that if we need dad, and we did, he can come too.  So we all pack in this tiny space.  They bring more chairs.  I have to sit high up on the exam table above everyone else.  Kind of singled out....I am the patient after all--let's not forget.

We all know that I can't hide my emotions.  Tears have been a constant for awhile now.  After enough tears I get a bit numb, and that was how I was feeling sitting on that cold exam table.

The doctor came in, with the nurse practitioner.  We all made our introductions.  I was remaining calm.  And then he said, okay Eve, I'd like to hear your story.  It was such an unexpected act of interest--he cared about the story, not just the results of the tests that obviously showed that I have this disease, and this is what we will do.  So of course, that numbness was ignited and I started to cry again.  He handed me tissue, and gave me time to collect myself.  And then I told my story.

I figured I might as well go ahead and tell you my story, as this blog kind of started mid stream.

I remember lying in bed our first night at Kripalu, rubbing my neck, saying to Michael, I have this swollen lymph node and it seems like its been there awhile.  We chalked it up to allergies, as I've been suffering for years now starting about April.  This year I'd finally decided I might do something about it and go in for allergy shots.  Unfortunately the dose was very wrong, and I'd had lots of complications with that.

Fast forward to a month later. I remember washing and putting away these large mixing bowls we have that live on top of our refrigerator.  When I lifted my arms above my head I felt a real tightness in  my neck.  I wish I could have had the sense to act on my fears back then.  I remember so vividly thinking.."that's not right"  But my denial got the best of me, and I couldn't imagine that anything really bad could be happening.

Fast forward another month.  The gland was still swollen, so I got on the internet and googled swollen lymph nodes.   CANCER... LYMPHOMA... CANCER...that's all I read anywhere I went.  And then I just laughed it off as ...don't google things, you will always become paranoid.  But of course, I am a hypochondriac, so I got paranoid and decided to take this body to a doctor---something that I've never really been much a fan of.

My doctor checked me out and said this is a very common complaint.  There are hundreds of reasons for swollen lymph nodes.  Take these antibiotics and we'll follow up in two weeks.  And by the way, by looking in your ears I can tell your current allergy medicine (claritin) is not working.  I am prescribing Allegra for you.

So this was right before our big annual festival, Transformus.  I was less worried after the doctor's visit because of the obvious frequency of visits to the doctor due to swollen lymphnodes.  I didn't take the antibiotics.  I didn't change allergy medicine.  I guess I was one of those non-compliant patients.  And really, in retrospect, I think I was kind of in denial.

Fast forward to a bad allergy day in late July.  I decided I'd try that new allergy medicine. We got the prescriptions filled, finally...and I took Allegra.  The next morning I woke up with a sore neck.  This was the day I was to meet mom and Margie at the fabric store to pick out the wedding dress fabric. I was tired and fluish with a very sore neck.  I came home from shopping and was supposed to work from home but ended up sleeping the rest of the afternoon.

The next morning I woke up, and I noticed that my entire neck and collar bone area was swollen and really sore.  That was definitely scary.  But we both thought I'd had some reaction to the allegra.  I felt feverish and tired...this being just days before my bridesmaids were flying in for my bridal shower!

The girls came in, we had a great day shopping, and making the wedding gifts.  I remember kind of floating through that day in a spaced out kind of way.  That Friday night we had all gathered at our house for dinner, and it was then when Dawn (a bridesmaid and my oldest friend) and I were showing off our strange allergy reactions (she has this strange reaction on her lips that make her look like Angelina Jolie after eating certain foods) when my friend said, oh, you might want to get that checked out.  That happened to my friend, and he had lymphoma.

As devastating as that was to hear, it was good that he said it.  It really made me snap into reality and take things seriously.  We thought it was just an allergic reaction. 

So I have to say, waking up Saturday morning, on the eve of my bridal shower, I was terrified.  I got on the computer and read all of these things that added up to it really being lymphoma.  I'd been itching all over my body for months now.  My neutrophils were high.  I had cervical lymph node involvement.

I remember calling my parents from bed, at 8 in the morning that morning, with Michael right by my side.  Crying.  I think back now about how many times they've received distressed calls from me and have always been there to talk to me as long as I need them to be there. They were always there, and were there that day.  We spent all this time convincing ourselves that it wasn't so.  How could it be??

Shortly after, Michael's family came and with happiness we all got in the van and drove to Margie's for the bridal shower.  Such a happy time in my life.  Margie and Ray opened their home and the shower was SOOOOooo beautiful!!!  It was the garden party to end all garden parties.  I felt consumed with love from everyone there.   It was such a festive experience.  Yet I was constantly consumed with the darkness.  I have to say, that was one of the more surreal days of my existence.  At that time I hadn't had that much time to consume information about lymphoma to know that it was a very treatable disease. 

Anyway, it was all a very emotionally heightened weekend.  And I got the first appointment I could on Monday to see the doctor.  She of course saw me, berated me about not acting sooner, and then sent me for a CT scan of my neck and chest.  So I went two days later.  Two days after that her office calls and insists that I come in for a visit to discuss the results.  This is when Michael and I go in to begin to accept our fate.  It all seems so far away now...I've seen so many doctor's since that time, but it was definitely memorable.  Michael there by my side as she reads to me the results from the radiologist.  Lymphoma, sarcoidosis, or infection, in that order.  ...  then silence.  And me crying.  I remember her saying so profoundly though...is your mom in town?  ...yes..remember that this is hard for her too.  Be sure to take care of your mother too.

And it was a strange time for my mother too, as she was hearing news of this while she was away on her sisters weekend.  We didn't know the diagnosis, there were many more tests to do, so we didn't want to alarm anyone.  It really could have been nothing.  But I could tell it brought out the mother love in her.  She wanted to come home.  She just wanted to be here and make things right.  I kept envisioning the mother lion.  It was frustrating because our connections kept going bad, and we weren't able to communicate very well, at a time when we really needed to be able to hear each other's voices.    Dad was there, and talked to me.  He has such a calming and reassuring sense.  And grandma was there. ...her love strong and supportive.  And of course, my sweet Michael.  And his parents--they've been right there too.

So then there followed these weeks of unknowing...tests and more tests.  And finally a biopsy in the hospital.  I remember waking up from the anesthesia with my surgeon standing by my side reassuring me that if this is lymphoma, I will beat it.

I had the biopsy the 26th of August, a Wednesday. We'd all hoped to have the results by that Friday.  Friday came, 3pm came, and I finally called my surgeon..who I have come to really respect.  He says he hasn't heard anything, and we will have to wait until Monday.  Monday comes after an interminable weekend.  Monday almost leaves us and I finally call the surgeon again.  My mom is in my office, waiting to hear of our fate.  The surgeons office says he is in surgery all day, and probably won't be able to speak to me until the next day. I ask if my results are in and she says yes....!  Can you give them to me? No.  Can another doctor? No?  Can my primary care doc?  yes, they can access them on the network.  So call the primary care doc.  And they are just Kaiser affiliates and aren't connected to the network...and they are totally unresponsive to helping the situation. ...   So I am getting visibly more distressed....when my phone rings...and I answer it...and it is my surgeon.  and it is Hodgkins Lymphoma.  ....

And then Michael comes, and then my dad comes, and then we go home.  ....  and I sit on the couch...staring at the wall....

But time marches on.  We'd been holding off any plans for the wedding, but realize with more vigilance that we need to make this thing happen.  How could we not?  The day I am diagnosed, we meet Augustin and Krishan at the tuxedo store to complete their tuxedo order for our celebration.  We sit in the food court of the mall with soft pretzel in hand with my brothers and Michael enjoying each others company.  And feeling numb.

So that is my story.  It all started with a swollen lymph node many months ago.  And now we are here.  Life could be worse.  Of all the cancers to get, this is the one to have.  It is treatable.  As so let's begin.

That's my story.

photo by http://www.flickr.com/photos/muha/

BMB

Okay.  So.  Whew.  How to find words to describe that experience.  Right now I am sitting on my screened in porch listening to this beautiful thunderstorm--one of my favorite things in the world to do.  But as I sit here I can't help but feel like I just stuck my finger in an electrical socket. I am drained, and fried, and feel like a puddle of mush.  Oh, and I have a pain in my ass. 

So today I went in for the bone marrow biospy.  And apparently in addition, they needed some of my bone too.  Par for the course, I didn't sleep well last night, and was already feeling a little on edge.  Sleep helps me SO much with the coping skills.  But my subconscious knew that I had this doctor's appt. today...so.  ...

Mom and I drove together to the doctor's office.  It was the NP that was doing the procedure, I'd met her before and she's been doing this for several years.  She spent some time with us discussing the procedure.  Now granted, she never said this wasn't going to hurt.  And Heather properly warned me about this, um, what were your words darling?  "That was probably the worst part of the whole treatment!"?  So I am a little nervous.  But am trying to hold it together.  Mom is there, talking tough, and supportive.  This will be done in no time, etc...

So now it is time to get on the table.  I hike my dress up, she hikes my panties down, and makes sure I am all sterile.  From there, I don't even know.  It was horrible.  She didn't get the aspirate on the first try.  I was hyperventilating so bad I thought I was going to pass out...enter cold cloths...Second try, a go! But the aspirate is only the first step. 

Second step, bone.  So she goes in again...and just when she pulls out and we think we are all done, she sees the bone core didn't come out!!  So she had to go in again...apparantly the lidocaine decided to stop working and it hurt like even worse hell. I thought I could muscle through--just get it done-- she tried, but it was just so painful. I was  just screaming. She was nervous, so she just pulled out and gave me more lidocaine (which the shot in itself isn't too pleasanat). So then she goes in again, and it is at  this point I realize the hand of my mother's that I've been gripping like a vice clamp  from the beginning is gone, and she is sitting down behind me and asking for water.  Talk about a tough thing for a mother to watch as her child is screaming on the table. The way she tells her near pass out experience in itself  brings humor and incredible sweetness...and we are all glad she didn't pass out.

Try two for the bone was also unsuccessful.   At this point, mom was recovered, and the nurse went in again.  We grinned and beared that sucker.  The NP was staying cool, the nurse in the background was coaching my breathing.  Too bad with all this to do there wasn't a baby coming out the other end.  (not saying this was anything like having a baby).  Third try a charm!  Thankfully.  We got to see the bone piece, and we, all 4 of us, just took lots of deep breaths and realized we made it through the other end. 

I know so much of what I experienced was my brain getting the better of me. I probably have felt pain just as bad and not have given it as much thought--a hit on the funny bone, a fall off the sea-doo. Maybe. I often wonder if that by going through this whole experience I will come out better in the end if I can learn a way to quiet the mind and relax a little.  That being said, I am NEVER doing that again without some sort of mind numbing substance. 

After the procedue, I told the NP and the nurses about where I work.  "We work in this laboratory, and sometimes local docs send their patients in to get blood draws.  Many of these patients are autistic.  My office is near the blood draw room, and when these kids come in, they are terrified.  They scream and yell, and it ends up being this traumatic experience for all involved."  I felt a kinship with these poor autistic kids.  The fear can consume. 

I also thought of Curtis and Honeybear.  When we take them to the vet the shake uncontrolably.  It is so sad to see the way they show fear.  On that table I was shaking so badly, and I couldn't control it. 

So there we are, one step closer to beating the monster.  Heather, I hope you are right, I hope this is the worst part.  On the way home mom and I chuckled and said, yeah, chemo doesn't seem that bad right now.  A little nausea, a little fatigue....

As angry as I am about things, it is hard to ignore the sweetness.  This thunderstorm is melting the stress away. let it rain...did I say that??  Yeah, it is healing.  Michael just got home.  My mom and I have bonded in a whole new way, and I know she truly is here on this journey with me.  (not that I didn't know that before). 

I got sweet voicemails and emails today from folks.  I am now going to be considered daughter-in-love instead of daughter-in-law, I like that. 

So there you go, that's the story of the bone marrow biopsy today.  Don't ask me to rant about whether or not I really felt it was necessary to begin with...I'll save that for another day.

Oh, and one final side note...the NP did tell us in casual conversation...I don't know how this feels, but I can say that after doing these, if I had to do this, I'd definitely do this in the hospital under sedation.   ...  This was before the procedure.