Friday, September 18, 2009

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 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.

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Wednesday, September 16, 2009


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.  ...

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.

Monday, September 14, 2009


Today I made the appointment for my first chemotherapy session.  It was something I needed to strike off the list, but it surprised me at how hard it was.  I'd made the surgeon appointment last week--for October 6th--to put the port in, and just hoped that we could get started on the 7th.  And it went just as planned.  The scheduler was nice, the 7th was available, it was easy.  But... I hung up the phone and cried a deep cry. It hit me like a ton of bricks from nowhere.  I realized I should shut my office door--at least keep it almost closed.  I sat there and just breathed. I am trying to learn this practice of breath and relaxation and ways to get my brain okay with things--I've never been good at it, that is why Michael has been such a gift, he can help me with that. It is like he is the wonderful blanket over the fire of anxiety.

And then, my mom came in, she was beaming, and thinking of the wedding--needing to ask me about this and that.  She looked beautiful and radiant as this whole time in our life brings great joy.  Then she looked at me and saw that I'd been crying.  So she let me cry some more, and was just there to hold the space.  Michael came by a couple of minutes later--both of them were coming for different reasons, and usually never (rarely) visit my office during the day other than the usual lunch time.  But both seemed to show up right when I needed them. 

So again, the feeling that this isn't some bad dream slapped me into reality.  I know that this is going to be okay, I will live a long and healthy life after this, but I think I am just scared of what is to come.  I put into my Outlook calendar today the number of doctor's appointments I have coming up in the next month and it is heavy.  It is heavy, and as much as I am trying to be positive, I see I can still cry, and be scared, and it is okay.

But what is crazy about this whole thing is the intensity of emotion that comes.  My parent's have always teased me that I live for peak experiences.  Feeling fully and deeply is living to me.  So with that comes ups and downs.  I've always said I will take the downs to experience the ups, and I guess this is a good test of that, eh?  But the good that I have experienced since this diagnosis is really life changing and eye-opening.  The outpouring of love that I have received from you I feel intensely.  And that love sits in my heart and creates more love that manifests this amazing postivity that I hope you feel too.  It is almost as if this love circuit is becoming so warm that we are in a way making the world a better place. 

I had an amazing weekend.  Friday night I went to the art show opening in which my aunt Patty had her first acceptance to a juried art show.  Family and friends showed up to support her, and it was just lovely and inspiring.  She is the quintessential Renaissance woman...artist and scientist! I got to see friends that I haven't seen in awhile, and their love was felt and consumed.  We ended the night at Becky and Pat's house--so warm and inviting, and really showing the depth of the heart.

Saturday morning I awoke my usual 7:30 time, but slinked back into bed and just felt like sleep was delicous next to my loving man.  I haven't slept in like that in awhile, and sleep feels so welcome these days.   Saturday night I spent with friends eating good food and laughing.  Augustin took the party with his apple pie--which was a feat because he never cooks! I was so proud.  Sunday mom, grandma and I headed to aunt Margie's to have a ladies day of working on my wedding dress.  We pulled into the driveway and Margie was sitting with someone on the bench by her lake.  When I realized who it was, my heart burst with happiness.  Michael's mother Rin surprised me by driving the 5 hours from Tennessee after working the night shift.  She didn't want to miss this opportunity to be there with the amazing women in my life while we created this beautiful dress for her son's and new daughter's wedding.  She is awesome, Margie is awesome, my dress is more goregous than I could ever have imagined.  I am lucky to have such a supportive family--the image of my grandmother holding the cutout organza fabric over a tea light candle to make the petals of a flower on my dress is lasting.  My mom pinning the lace to by bodice while I rest my arm on her shoulder for support... about the enhancement of emotion.  If it weren't for the bad, I'd wonder if life could get any better.

So I sit here emotionally raw.  Thanks to you I feel like it will be okay. Your love is like a food, and I feel selfish to ask for it.  But it helps.  I've learned a lot in this short month about what makes the world go round.  I hope that I can be to you what you are being to me.

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Thursday, September 10, 2009


I like lists. There is a certain satisfaction in the whole process. But sometimes the satisfaction is just the added bonus in the daunting task of trying to keep your life organized. Right now I feel like I am swirling in a pool of lists--wedding lists, work lists, doctors lists. Circles upon circles upon circles. I keep trying to keep up...I'm not running, but I am walking. Let's just see if I can keep up (sleep will help!).

Wedding planning is coming along really nicely. It helps that I have a mother and and aunt who've been waiting for this since my birth 33 years ago. It also helps that my soon to be mother-in-law is also amazing at getting things done!!! The wedding is a bright ball of sunshine every time I think about it. It all seems to be falling together so nicely despite the weeks of uncertainty.

Before going to the oncologist yesterday I convinced myself that I would start treatment before the wedding. Chemo is once every 15 days. I figured I'd get one in before, and the second directly after. My thought was--- spacing would leave me feeling okay for the wedding, and would see me on my way to recovery. My mom talked to a nurse practitioner at Emory, my aunt Sandy talked to her doctor friend, and my own oncologist also thought that waiting for treatment until after the wedding would be okay. I also talked to a colleague at work. His wife waited 6 weeks from diagnosis until treatment to start. So I have all these people saying it is okay to wait. To enjoy the wedding without feeling sick, and without having to show a port in all my wedding photos. So I keep thinking, yes...this will be okay. But why do I keep thinking that I want to get started?? Maybe because I feel it, I feel the tumors, and each time I do I have to brace myself for the reality of what that means. Ahhh...but it sure would be nice to celebrate love and happiness without complication.

SO, on to lists....

Before I can start I need to:
  • Get full body CT scans--done
  • Get a Pet Scan--done
  • Get a MUGA scan for the heart--done
  • Schedule a pulmonary function test. My heart test looked GREAT! They have to check my lungs too as the chemo can ruin lungs and heart. Not these ones though!
  • Get pulmonary function test
  • Schedule an appointment with the Radiation Oncologist--done
  • Meet with the Radiation oncologist
  • Schedule an appointment to get a port put in--done although this prompted an additional scheduling with the nurse practitioner to go over health history and get valium.
  • Get the port put in
  • Get flu shots
  • Talk with the chemotherapy nurses to determine the schedule. I get the port put in on Tuesday, October 6th, and hope to start chemo the 7th.
  • Draw blood for all baseline Metametrix tests, and genetic testing
  • Send all bloodwork since the dawn of Metametrix time to Becky Murray who is gracioulsy helping me through this with our type of medicine.
  • Schedule bone marrow biopsy--done. Wednesday...yikes. I am scared about this.
  • Get bone marrow biopsy
  • Set up appointment with Progressive Medical's oncologist to discuss alternative therapies such as vitamin IV's.
  • Find the best support team a girl could ask for--DONE!!!!!
I can't tell you how much your outpouring of love and support help through this scary time.

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Wednesday, September 9, 2009

So It Begins

It is interesting sitting here creating my own blog spot. I've dabbled here and there with Live Journal and Facebook, but have never considered myself computer interested, or much of a writer with much to say.

But life has its interesting way of bringing things to mind. I've had quite a whirlwind of experiences this past month and this is just the beginning. I feel surrounded by love--unbelievably so at times, which is amazing, because life is GOOD, and love is saturating. I am even more so appreciating the good in life through experiencing the hard times. And it is just beginning! Let's see how this yin and yang plays out shall we?

So I've decided to create this blog post to have a place to put my thoughts, my emotions, and most importantly to many of you, my updates! I can't tell you how grateful I am to even the littlest acts of kindness. I never knew before how much that can mean to a person, so thank you to all who are reading.

This isn't a means to push sad depressing things on you. So I write in this blog, and if you choose to come and visit, I welcome you! If not, that is totally fine too. It is just going to be an experience. A friend told me recently, and then was echoed by my oncologist...this is an experience you will survive, but you will be changed. You will be a survivor. And I wholly feel this right now. It seems REAL and BIG in one aspect, but I also try to remind myself that it is a series of months with shit to go through until I am normal again....whatever you consider normal, right?

I named the blog "Let It Rain" after the Four Strings Song. Michael introduced my hippie soul to this powerful dance song. I've loved it for years, and can't help but smile when I hear it. Last night, faced with the promise of the next day's first oncologist appt, he put this song on. We played it loud, and DANCED. Curtis barked, and we laughed. I felt HAPPY. And that is what it is all about, right?

Rain on my skin
I feel a gentle summer wind
In your eyes
I can see the deep blue sky

Let it rain
Let it colour all my skin
Let it rain
Wash away my doubts and pain

I wanna discover
I don't wanna make believe
Let it rain
Down on me
Let it rain down
Let it rain..
Let it rain..

Feels so divine
Only one thing on my mind
I'm alive
Let the island spirit shine

Let it rain

Let it rain
Let it colour all my skin
Let it rain
Wash away my doubts and pain

I wanna discover
I don't wanna make believe
Let it rain
Down on me
Let it rain down
Let it rain..
Let it colour all my skin..
Let it rain..

So here we are. Day one. I went armed with my mom, my dad, and my beloved to the oncologist to hear about my future. Dr. Hamerick was kind, was fully attentive, listened to all of our concerns, answered our questions, didn't rush, informed me of the goods and the evils, and seemed to really care. Love and kindness make the world go round. So here we JUMP! What other choice do we have?

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