Detecting the Diagnosis

The next weeks were spent preparing for an exact diagnosis because although my team was fairly certain I was about to battle Lymphoma, there was no indication of the specific form of Lymphoma.  If the diagnosis were going to come easily, it would be via a needle sliding into the top of my chest to retrieve a significant number of cells that were willing to cooperate.  Small hole, small scar, fat chance.  Of course, my diagnosis was not going to come easily.  The initial tone was set by the dramatic bleed.  Therefore, my diagnosis must show itself through an equally dramatic entrance.  If the diagnosis was not going to come easily, Thoracic Surgeon informed me it was going to come once he put me to sleep, collapsed my right lung, and cut out a significant portion of tissue from the tumors, leaving me with a six week recovery during which, I was not to pick up my daughter or do anything that involved getting winded.  To complete this summary of the surgical biopsy, he said, "No problem."  I said, "God, no!"  He made some calls and both biopsies were scheduled.  Why both biopsies?  Because Thoracic Surgeon believed my diagnosis was not going to come easily.  He was partly correct.

The needle biopsy came and went without the dramatic flare suitable for my diagnosis.  I received a call from Thoracic Sureon a few days after the cells had been taken.  I was about to leave for the hospital, where I would later witness the birth of my beautiful niece, when the phone rang.  He greated me in his all-business style and told me the needle biopsy had failed to retrieve enough cells for a diagnosis and I would need to come in for the surgical biopsy, which would be performed by his partner because he had forgotten he would be on vacation that week.  He quickly told me that the "guys in the lab" had reported it looked suspiciously like Hodgkin's.  However, he dismissed this remark as quickly as it had flown from his memory to his mouth.  This was the first time I had considered Hodgkin's.  "Suspicously" turned into certainly once Hodgkins became the clinical diagnosis.

The clinical diagnosis came with Thoracic Surgeon's partner, Dr. Evil Eye.  The first time I met Dr. Evil Eye was in a small exam room.  She was dressed professionally in a skirt suit with an evil eye charm dangling from a thin silver chain around her neck.  She was calm, cool, and collected.  She had me once again tell the tale of how I had gotten to this point.  She was confident and careful not to scare me.  Compared to that of her predecessors, her demeanor was refreshing.  I was relieved when I walked out of our visit as she had just informed me she was going to make a small incision in the base and along the side of my throat to retrieve the cells needed for proper diagnosis.  There would be no collapsing of my lung.  There would be a few days of recovery as opposed to six weeks.  I couldn't believe her less-than-dramatic plan for this surgical biopsy.  That evil eye was clearly on my side and ready to thwart the painful and dramatic schemes of all the thoracic surgeon thugs that came my way!

All that was left to do was rest up, get through the surgery, and prepare myself for the inevitable life-changing news I was about to receive.

I rested up, got through the surgery, and took the phone call that delivered the inevitable life-changing news.  I put down my fork at dinner and picked up the phone to listen as Dr. Evil Eye carefully informed me I had Hodgkin's Lymphoma.  No drama, just next steps.  Well, no drama on her part, only mine.  I wept.

There were numerous and sporadic tears in the days and weeks to come.  I was caught in a tornado of emotion that I may not successfully be able to communicate through the letters on this keyboard, but trust that I will attempt.

Buckle up, and as always, thanks for reading.
  

The Freakiest of Fridays

I need to take you back for you to have even the slightest ability to consider how “freaky” this Friday, the 13th of July was for me. 

Almost four months ago, my husband and I were traveling back from Montshire Museum. It was a hot, sunny Sunday in the end of June. Natalie was sound asleep in her car seat while we reflected upon our day. During the course of our trip to the science museum we had taken Natalie through all the exhibits and watched her light up with wonder and excitement as she learned and explored for the first time at Montshire. As a parent, I was feeling that natural high you get when your child is happy, healthy and loving - more than you could have imagined - every second of an experience you spent time planning and packing for. 

While perusing the museum, Natalie oohed and awed at the fish swimming around in the tank, the turtles relaxing on the log, the bees buzzing in and out of the hive. She raced toward the moose that stood stationary and staring. She pointed and gasped and shouted, “Look, Daddy! It’s a moose!” I watched as her daddy, full of pride and excitement to match, pointed her toward yet another exemplary exhibit. I snapped as many photos as I could for this was a day I wanted to document. It was a day full of light and laughter and love. It was a together day…one of those rare days during which you are sincerely, genuinely, thoroughly enjoying each other from one moment to the next. Your heart is full, brimming over with light and laughter and love. Euphoria is how I could describe the feelings I had while I watched Natalie shriek with delight as she ducked in and out of the water fountains in her sunhat and purple bathing suit – the one with the small pink polka dots and the butterfly on the back. Euphoria is how I could describe the feelings I had as Natalie leaned over to give me a kiss every time she put her sandwich down while we ate our lunch together under the towering white tent. Though she lacked the words to tell me, it was in this way she showed me how her feelings mirrored my own…nothing but love and gratitude so pure and overflowing for this gift of a day. 

It wasn’t long before we were traveling home…Natalie sound asleep in her car seat as we reflected upon our day. We talked about the exhibits, the trails, the water features. We talked about Natalie, how good she was, how excited she was, how appreciative she was, how in love with her we were. We talked about the future, the near future…our summer. We went over the plan again. The plan. My plan. His plan. Our plan. 

The plan was to get pregnant in July, finish my grad course at the end of July, get Natalie potty trained by the end of summer, have her “big girl bedroom” renovated by the end of January, have her sleeping in the new room comfortably by March, and welcome our second child in April. In my version of the plan, our second child was a son. In his version of the plan, our second child was a son. Our son already had a name. Our son was meant to be. 

Driving home from Montshire, reflecting on our day, planning for the future, my husband said to me, “I’m really happy.” I said, “Me, too.” We were happy. In that moment, on that day, we were untouchable and unstoppable. We had our love, we had our light, we had together, we had each other, we had our plan. We had it all…until a few too-short weeks later…until the freakiest of Fridays. 

On Friday, July 13th med students were brought into my room at Dartmouth-Hitchock Medical Center shortly after 6 am by the ENT specialist I had seen the day before. They gathered around me to check out my vitals and get a look at the swollen mass that used to be my neck. They were excited and eager to prove they knew something. None of them spoke to me. They asked questions about me, they looked at me, they touched me, but not one of them spoke to me. The ENT specialist spoke to me. He told me he would be back at 8, along with the doctors also working on my case. He would fill me in then. In the meantime, I could shower if I wanted because I would most likely be going home. He showed little emotion. From where I was sitting, there didn’t seem to be any reason to get anxious. I kept in mind the words I had been told by a 

Dartmouth ER doctor the day before…this bleed could be the product of something as simple as a quick turn of the head. No big deal. I got in the shower. I got dressed. I got ready to go home. 

The hour of 8 am came and went. My husband was getting restless and I was getting unable to tolerate the lack of communication from my doctors. My nurse was growing less and less patient with me as I questioned her for the fifth time that hour where my doctors were. It was nearly 10:30 when ENT Specialist walked in solo and solemn. He sat in a chair at the end of the bed I was attempting to sit on, instead of bounce out of to get going back home. My husband sat in the same chair he had attempted to sleep in the night before. We exchanged a look and waited. 

ENT Specialist looked at me without saying anything, but hello. He was quiet as he leaned forward and put his hands together in front of his mouth. He told me he had just returned from looking at the MRI with a few other doctors. He took in a long slow breath and let it out equally as slow. He told me the MRI showed a mass in my chest. He paused. He watched my expression instantly morph from disbelief to confusion to obliteration as I processed his four letter word…the four letter word that leads to that six letter word. Mass. M-a-s-s. Mass. It leads to c-a-n-c-e-r. Cancer. There is a mass in my chest. The thought was now complete. He watched my eyes fill as I watched his eyes soften. He respectfully paused while my tears spilled over. There was no stopping them…no energy or even will to stop those tears from spilling over in small salty waterfalls. He let me cry. He looked sympathetic and uncomfortable when he said, “I’m sorry. I know this isn’t the news you wanted to hear.” The news I wanted to hear. The news I wanted to hear?! 

“News.” Yes, it was news to me, the most shocking of news. I had been living my life, loving where my life was going, planning my future with absolutely no inclination of this news, this mass in my chest that could be cancer. I may have cancer. It seems like he’s telling me I have cancer. I have a daughter. She’s two. She’s beautiful, she’s happy, she’s two. She needs her mother. I’m her mother. She needs me. My daughter needs me. I may have cancer. My daughter needs me. Daughters need their mothers. Cancer. No. I’m too young. My daughter needs me. I can’t leave her. I can’t have cancer. 

This was the inner monologue while ENT specialist said a few more words that I never heard. I never heard those words because I was transported to another place, a place that couldn’t have been farther than the happy, euphoric place I had been just weeks before. I can’t tell you where this new place was, but it was the scariest place I’ve ever been. I was alone in the dark. I felt as though I was standing on an island only big enough for me, with nothing but dark skies and dark waters all around me. It was a place where I felt the presence of my own death. I wasn’t sure how close my death was, but I was painfully aware it may be much closer than I had ever previously allowed myself to imagine. Instead of having my entire life ahead of me, full of plans and dreams coming true, in this place, I had only uncertainty and fear. The fear was consuming and penetrable. It was everywhere. I was so afraid. 

I was afraid of being forced to leave my family, the one I made and the one I came from. I was afraid of not being a mother anymore, or a wife anymore, or a daughter any more, or a sister anymore, or a teacher anymore. I was afraid of being no more. I had always felt I was a person of faith. I felt I was spiritual and trusting of a higher, truer power and meaning, but in this place of darkness and fear, my faith left me…or I left my faith. Where there had been trust and calm in my heart and soul, there was now chaos and confusion. There was nothing and no one that could save me from the sickness and the sadness and the presence of death I felt for what was at least an hour or two until the next specialist would arrive. 

In the interim, my husband sat still and staring while he held my hand. Those small salty waterfalls continued to flow. The tears streamed together in a continual outlet of fear and anxiety and disbelief. I was powerless to close the dam. Phone calls were made and texts were sent as I sat in the hospital bed and stood on my island. I would get myself together just long enough to think of Natalie, two years old, so happy and innocent, and start crying all over again. I was packed and ready to go home. I wanted to go home. I was safe at home. I didn’t have cancer at home. If I could just get off that island and go home… everything would 

go back to normal. We could get back to our plan. But even though they would be letting me go home, I had to hear reality first. I would not be allowed to feel safe anywhere for any longer because I wasn’t safe. Safe was a myth and the next specialist to enter the room brought the proof in his laptop. 

Thoracic Surgeon walked in with ENT Specialist a few hours after my first hearing of the “news.” He was tall and confident. He had a sense of humor. He opened the laptop so that he could show me the images that had been gathered from the CT and MRI. My husband and I, and a much-needed-cousin that had arrived crowded around the laptop with Thoracic Surgeon as he pointed out the mass growing between my ribs and my lung and explained what the mass most likely was. It was most likely lymphoma of some kind. He said the word “lymphoma” as a pediatrician would say the word “virus”… like it was simple and obvious. 

Thoracic Surgeon was all business as he loudly, confidently told us of the next step, which was a biopsy. We couldn’t fight “it” until we knew what it was. I couldn’t fight for my life until I knew what I was up against. Who knew it would take so long to get to the fighting part? 

Now that I’m in the cancer club – a club I specifically remember saying I wanted no part of – I know that there are steps to follow. The first step is identification. You have to know it’s there. Thanks to a dramatic bleed in my neck, we could consider my cancer identified – no more hiding out in efforts to take over and snuff me out. The second step is diagnosis, which doesn’t happen without a biopsy, or in my case, two. We’ll get to that next time. For now, picking back up with Thoracic Surgeon… 

He went through the next steps, which sounded scary, but doable. He tried not to frighten me, but was upfront and honest. He came off as the no guts, no glory type. He was ready to hit this lymphoma head on. It wouldn’t be easy, but it sounded like a battle I could win. I was comforted. I chose to get off my island and step back into the land of the living. There was a long road ahead of me, but I was willing to take it. All I had to do was accept it and get moving, which as you will read in the future, is easier said than done. 

My husband and I and my much-needed-cousin left the hospital together after the session with Thoracic Surgeon on that freakiest of Fridays…Friday the 13th. I couldn’t wait to get home, but I was also dreading it. There were people I loved that I now had to face knowing how scared they were and how scared I was. Could I face cancer? Would I be strong enough? Did I have the courage? The answer to each of those questions is “yes,” however, we’re all entitled to a little weakness at times… 

If you’re still with me, thank you for reading. It means a lot to have people read and care about my story. I only know that you read it if you comment, but I understand if you have nothing to say…I wish we had a guest book! 

The Beginning

What I refer to as the beginning wasn’t actually the beginning.  The actual beginning of the assault on my body by Hodgkin’s Lymphoma was probably at the end of October of last year when I experienced vertigo and constant fatigue.  I was also anemic, which was a big mystery to my primary care physician.  She tried so hard to figure it all out.  It was as if she knew there was something seriously wrong, but she just couldn’t find it.  After an endoscopy in May showed nothing but normal, she reluctantly told me I seemed to be fine and we’d keep an eye on the anemia.  Then July happened.

What I refer to as the beginning is Thursday, July 12th.  Three months ago I was taking a grad class in Johnson every Thursday.  I was working out on my treadmill every day of the week.  I was playing with my daughter, Natalie, outside and in her inflatable pool.  I was soaking up sun and enjoying time with family and friends.  The summer was off to a brilliant start until I got up the morning of the 12th.

I woke up in pain.  The right side of my neck and into my shoulder was significantly swollen.  It felt warm to the touch.  I told my husband I must have pulled something while working out.  Then I noticed the trouble swallowing.  My options were to forget about it, put on a collared shirt, and get to Johnson for class, or go to the ER to get it checked out.  I put on the collared shirt.  I did my hair and make-up.  I packed my bag.  Then I had a vision of me sitting in a classroom in Johnson not able to breathe.  I gathered my things and told my husband to take Natalie to daycare.  I was going to swing by the ER before going to class.  I’d text my professor and let her know I was going to be a little late.  I walked in the ER at five after seven that morning.  Little did I know this “swing by” the ER would be the commencement of the most terrifying time of my life.

The ER was quiet.  The doctor that took over my care was not.  As one doctor got ready to leave, he stopped by my room and asked about my symptoms.  I shared with him the swelling.   He took a deep breath and let it out slowly.  Then he told me he thought the fluid in my neck and shoulder was blood and left the room to go get the loud doctor that would be taking over my care.  Loud doctor thought it was blood as well and ordered me a CT scan.

My CT scan was finished, and I was put in my room around 9:15.  I felt like I could still make it to class.  The ER then proceeded to fill up with an elderly man who didn’t remember driving off the road and into a brook, a woman who was skin and bones and needed medicine, a baby with a bad cough, and the list goes on.  I sat in my room assuring my husband via text that he could stay at work.  It was just blood.  No big deal.  I was being completely ignored, so it mustn’t be an emergency.  And then I heard Loud Doctor talking on the phone to someone about a “VERY INTERESTING” CT scan he had in his hand.  I knew he was talking about my scan, but couldn’t guess what could be so interesting.  The next text told my husband he needed to come now.  

At eleven, Loud Doctor told me the fluid in my neck was definitely blood.  The question was whether I needed to go to Dartmouth or a local ear, nose and throat doctor.   Loud Doctor said there was nothing he could do for me.   Because Loud Doctor felt Local ENT Doctor was a “dick,” (his word, not mine) it was decided I would go to Dartmouth.  

As anxiety and medical bills mounted quickly, phone calls were being made and texts were being sent to the closest family members.  I was still in contact with my professor.    I had given up on going to class for that day, but assured my professor I would see her the following week with all my work made up.  The ambulance arrived at 12:30 to take me to Dartmouth.  I couldn’t believe all the drama!

All I did was pull something!  I couldn’t stand the fuss everyone was making about my airway, which was supposedly potentially in danger.  I hadn’t seen any scans or been given any information except that there was blood pooled in my neck and shoulder.  I haven’t mentioned the pain.  Let me mention that now.  I was in so much pain!  The constant ache in my neck and shoulder began radiating down the right side of my back.  I couldn’t stand any position.  I wished for pain meds with all my might.  I didn’t get them.  

The ambulance arrived to bring me to Dartmouth.  I had no idea what was happening to me.  I knew I was in pain, and I knew that this doctor didn’t know what to do with me anymore, so I was going to doctors more competent.  So, after five and a half hours of sitting in the local ER, I was loaded into an ambulance.  The ambulance ride involved nausea meds and a blood pressure cuff every ten minutes.  I had a nice conversation with the paramedic in charge of my airway on the way down to the hospital.  I thought of my brother, who is a full time firefighter for the city of Burlington.  His job involves so many ambulance rides!  I still couldn’t believe all the drama surrounding something as simple as a little overexertion.

At the Dartmouth ER I was brought in and parked in the hallway with patients who may have broken a bone.  I was startled at all the people!  I was parked in a damn hallway.  My husband wasn’t with me, and my paramedic reluctantly left me there by myself.  I wanted to cry at that point.  Why the hell wasn’t I at class?  Why the hell was I sitting on a gurney in a hallway at Dartmouth?  What the hell was going on with me?  Where the hell were the pain meds?  Wasn’t this a hospital?!

After about 10 minutes, I was ushered to my own room.  I met a few nicer doctors, had a nice nurse, and was finally given something for my pain, which was about an 8 at that point, if you’re familiar with the pain scale.  It was decided I would be spending the night so they could watch my airway.  I was told I would have an MRI that night around 7.  A potential surgery loomed after the MRI if there was a need.  I wasn’t given any liquids or food to eat.  I was so thirsty.  IV fluids were not satisfying me.  I began to fall apart at 7 with my nurse on the fifth floor.  I needed more fluids.  I got some through IV and at 8, a few guys finally showed up to take me down for the MRI.  

What came next was two hours of being told when to breath in and when to breath out.  There was a cage around my face and straps all over my body.  I was told not to move while ear plugs were placed in my ears.  By the time I got out, I was dazed, nauseous, and upset.  Let me mention again, the pain.  It was back in full force after being strapped to a small sliding slab of plastic.  I got back up to my room where my husband was waiting.  It didn’t look like I needed surgery tonight, but there was still no word until morning about whether or not I could eat or drink.    I received my pain meds and was able to get to sleep.  By this time it was 11 pm.  By far, one of the longest days I had ever experienced in the medical world.  The doctors were to arrive at 8 to tell me the results of my entombed two-hour scan.  They didn’t arrive until almost 10:30 the next morning.  What I was told the next morning, Friday, July 13th will be the next blog.