Saturday, May 5, 2012


JOURNAL ENTRY: Saturday, January 26, 2008

Aconcagua Camp II 17,715 ft. 

Last night I lay in my sleeping bag, eyes closed, breathing deeply while these enormous waves of water were repeatedly crashing over the tent.  I wondered how long would the tent withstand this?  I waited, fully expecting for the tent to collapse and for the water to come flooding in and I thought how ironic it would be for me to drown, while climbing a mountain.  I thought about how long could I hold my breath if it finally caved in and I imagined floating off, over the edge of Aconcagua and down, down, down, thousands of feet... until I woke with a jolt.  The strongest winds we've experienced on this climb yet, are whipping hard and noisily (the sound of crashing waves) at our tent. I'm sitting up now as my eyes slowly focus in the dim light of early morning. I look down to my right...the others still soundly sleeping, completely oblivious to the howling winds, to the near danger (I thought) we were in of being swept off the mountain and then it occurs to me that I might possibly be losing my mind. 

At a height of 22,840 ft. (6,956m)
Aconcagua is the highest peak
in the Southern Hemisphere and
one of the SEVEN SUMMITS.

At high altitude, climbers can suffer from lack of oxygen and become delirious among other things.  This is the only experience I can think of that I have to relate to my sister Donnas' initial reaction to being diagnosed with cancer.  

In February of this year, my sister Donna was brave enough (after a bit of prompting from me) to put in words her "Alice in Wonderland" experience, in hopes that others who have had similar stories would not feel so alone in their experience and so that all of us can have a better understanding of the impact cancer can have on us and more importantly the power we all have to rise above it!

Alice in Wonderland

I was diagnosed with Non-Hodgkins B-Cell Follicular Lymphoma  only 9 days after my older brother died of lung cancer. Hearing the  words that “you have cancer” was never something I envisioned for myself.  Despite having many family members that have had cancer, I never expected that for me.  And yet, here it was – in my face.  It all happened so quickly and I was so sick in the beginning that it was difficult to process it all.  Suddenly, I felt like Alice in Wonderland stepping through the Looking Glass, where everything is backwards and doesn't make sense.  I thought I understood what it must be like to have cancer.  After all, I had talked to my family members.  I had worked as a pediatric oncology medical social worker and talked with children and their families daily about their experiences with cancer.  But, you never really know until you walk in the shoes yourself.

My symptoms had started months earlier with back pain that was dismissed by my family practice doctor as “poor posture” and given Motrin and a referral to a physical therapist.  The pain progressed into my abdomen, which had begun to swell to the point that I looked nine months pregnant.  The doctor finally ordered an ultrasound with the results that I had lesions on my liver and spleen and he felt that it was indicative of metastatic cancer.  He ordered a CT scan, which showed that most of the lymph nodes in my abdomen were enlarged with the largest being 14 cm (about 5 and ½ inches).  He changed his diagnosis to lymphoma and referred me to an oncologist.  I never made it to that appointment because the pain became so severe that I was hospitalized. 

I received my first round of chemotherapy in the hospital while also under the influence of a large amount of dilaudid (synthetic morphine).  Therefore, I don’t remember much at all.  What I do remember is getting released from the hospital and being told to go directly to my oncologist’s office for a shot and a dressing change for the new Power Hickman catheter that was now in my chest.  When I walked into their infusion room, it was truly like walking through the looking glass.  Now, I was “one of them”.  Numerous faces stared back at me from their lazy boy chairs while they were hooked up to the bags of poison that would give them a chance at life and survival.  I thought “this is not me”  “this can’t be me”  “I don’t belong here”.  All these people seemed older than me.  It was quite possibly the most surreal moment of my life.  When I got home, I remember crying as our car backed into the garage.  I really thought that I was never going to make it home from the hospital.  I dragged myself up the stairs to my living room, sat down in my lazy boy chair to rest and to settle in to my new life as a cancer patient.  

When you have cancer your daily routine becomes centered around doctor appointments, lab tests, and managing the side effects of chemotherapy. The treatment I receive is R-CHOP.  Rituxan – a targeted monoclonal antibody therapy used specifically for my kind of cancer, Cytoxan – one of the oldest chemotherapy drugs used for many different kinds of cancer that causes hair loss, Doxorubicin – also known as the “red death” - one of the most toxic chemotherapy agents that can cause long term heart problems, Vincristine – an alkaloid chemotherapy agent, and Prednisone – a steroid.  I think I have had every side effect of the chemotherapy that was listed on my drug information sheets -nausea, vomiting, insomnia, racing thoughts and anxiety, hair loss, bone pain, anemia, taste changes, weight loss, chills, fever, fatigue, headaches.  I had side effects above and beyond what I was warned about – two bouts of shingles and two hospitalizations due to blood infections.  When well meaning people ask me what my plans are for the day – sometimes my only plan is to get through the day without vomiting or to just be able to conserve my energy so I can do the laundry without passing out from lack of oxygen due to severe anemia.    You start using words in your vocabulary that you would never use.  Things like "I think I am neutropenic”, “my counts are low”, and “my central line needs flushing."  More importantly though, you spend each day managing your emotions.  Suddenly, you are faced with your own mortality.  At the age of 48, I never expected to have those thoughts and yet, there it is in my face daily. 

My family and work life has changed dramatically.  I still have two children in college and one in high school.  My husband and children have had to adjust to my illness and my inability to do as much with them as I usually do. 
 I have been fortunate enough that my work has allowed me to do my work from home.  Every day is a challenge.  

I am fortunate enough to receive excellent care from my oncologist here in Alaska.  In the beginning of our relationship, I asked many questions.  I then went home and researched more about my disease only to go back and ask more questions.  When you have cancer, you are relying on the medical community to give you the best information about current treatment protocols.  I was at his mercy to trust what he said.  I received good news, after only four rounds of six chemotherapy treatments, that my cancer was almost gone and the prognosis is excellent that I would go into complete remission.  After that news, I trust my oncologist with my life.  Oh wait - I had already done that. 

My oncologist referred me to the Seattle Cancer Care Alliance/Fred Hutchinson Cancer Research Center in Seattle, WA to discuss possible stem cell transplant and/or radioimmunotherapy as consolidation therapy after initial chemotherapy.  I was fortunate enough to be referred to see Dr. Oliver Press, who is one of the world’s leading researchers of lymphoma. He has been at the forefront of developing new therapies known as immunotherapy through using radiolabeled antibodies that offer a way to spare normal cells while blasting cancer with high doses of radiation.  Combined with stem-cell transplantation, this approach has produced some of the best lymphoma cure rates in the world.

From the moment I walked into the Seattle Cancer Care Alliance House, affordable housing for oncology patients and their families nearby the clinics, I knew I was in good hands.  The staff there were friendly and caring.  Infection control is at a high standard.  The rooms were immaculate and comfortable.  There were numerous free patient and family educational classes available each day as well as fun social events.

At the SCCA clinic, the staff there were also knowledgeable, friendly and caring.  There were posters everywhere for free educational classes and support groups for patients and their families on a range of topics.  There were meditation and sanctuary rooms, and boutiques to purchase cancer care items, 

Dr. Press spent a total of an hour and half with me.  This is quite possibly the longest any doctor has ever spent with me. He was engaged and listened.  He was prepared to speak with me after looking over my medical chart before I got there. He ultimately decided that I do not need a stem cell transplant at this time because initial chemotherapy is working but did suggest immunotherapy consolidation treatment to include the radioimmunotherapy that he and his research staff developed.     He offered to speak with me in the future if I have questions.  He was genuine, caring, and passionate about finding a cure for lymphomas as he explained his current research and completed studies.   Based on the level of his experience, I felt confident when I left that I was getting the best medical advice available.

I learned from my experience at Fred Hutchinson Cancer Research Center that they are caring researchers that are working daily to find cures for cancer.  New research is what is helping me fight my cancer and win!  

Power of Seven-fundraising page

There have been so many lessons I have learned from this experience.  I realized that staying positive and fighting back is the only thing you have control over.  I realized that all the small moments of each day have more meaning than they ever did before.  I realized that the love I have from my spouse and children is the most precious thing in my life.  I realized that I have family and friends who love and support me unconditionally.  Most importantly, I realized that I am not going to let cancer define who I am. 

This is just a side road in the journey of my life.  Sometimes taking a side road shows you beauty that you would have never otherwise seen.  I am learning to keep my focus on the present and to let go of the past and to not worry about the future – something I had never been able to do before.  Unfortunately, I had to be diagnosed with cancer, to learn these valuable lessons. 

So, although I still feel like Alice in Wonderland – in a world where everything doesn’t make sense – it sort of does.   

May 2012... I am happy to tell you that Donnas' treatment was successful and her most current tests show that her body is now clear of all cancer. She is in full remission! We are heading to Cabo, Mexico in June to celebrate! Whoot!

1 comment:

  1. Wow, what a great writeup Donna. You are truly a fighter. Thanks for sharing your story!