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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  1. Thanks, Eve. And amazingly... we wait once again for biopsy results. I leave Sunday for a week's silence & meditation - incommunicado.
    Will have to listen solely with my heart.

  2. Thank you for sharing your means a lot to me to get to share with you in this time of uncertainty, but one thing that is certain is that you have all of this love and support around you....Can't wait to squeeze you! Lots of love. See you soon!

  3. Love you Evie! Holding soft warm space for you!

  4. Thank you so much Baraka, Tijana, and Patty! :) Your love warms my heart.

  5. To Evie from Sara...
    Wow, I can't believe you held it together at your shower with all this dark, scary stuff storming inside you. I know it wasn't the right time to share with us since you weren't certain of the diagnosis, but I look back at that day and it makes me sad to think that you were so distraught but had to hold it in. Don't do that again, ok? (Even though I know you will). Your story is unbelievable, and I had a very similar scare the spring that we returned to UGA from Oregon. I was taking my US Govn't exam at the end of school year, massaging my neck unconsciously while I organized my thoughts and I felt this gigantic node. I examined it more with my fingers and it was huge, and it took my breath away and made me completely forget about my exam. For about a week, I really thought I had cancer! They never really knew what caused it, and a round of prednisone cleared it up (get this: spanky, our mutt mix, was on the same drug for allergies that week!) but I'll never forget that feeling. Funny thing is, the part of the future I most dreaded was having to tell Larry that I couldn't work at Camp Twin Lakes because I had cancer. HA! Ah, the college years. I was curious how you discovered you had this, and what prompted you to see a doctor, and it's all just so scary. Google is the WORST; when I was pregnant with Sam and they told me weeks before he was born that I had extra amniotic fluid, I got on the internet that night and viewed the most horrific photos of deformed children. I was convinced that our unborn baby had Spina Bifida or something horrific, and I recall that breathless feeling of dread and fear driving to our ultrasound, to find out more (luckily, he's healthy as a hog!). True to form, I've written a novel here but I appreciate your honesty in these posts. And I must say, you are an excellent writer! You have such a beautiful way of expressing yourself...thank you for giving us this gift of insight into your world. You are breathtaking, my bride-to-be!

  6. To Eve From Jerelyn
    I'm glad it's treatable. I'm only now learning of this Eve. Thank you for the blog -- especially from those of us who love you from afar. You write so well -- I'm full to the brim with this grand story. . . L O V E to you sister. J