Second Opinion, Same as the First Opinion

I exhausted but I know there are people who are anxiously waiting for an update about my appointment.  I have quite a bit to say but for right now I have just about enough mental energy to update quickly before I take a long hot bath and fall into bed.

Dr. Leonard is wonderful.  He is a teacher in the way that you wish every doctor was a teacher.  He patiently explained to me what the type of lymphoma I have means, how it will affect my life and how he will help me over time.  He was genuinely warm and caring and somehow managed to explain the basics of my disease with enough enthusiasm and empathy that it almost didn’t seem as if he had explained it hundreds of times this week alone.

Dr. Leonard confirmed that I have low-grade, indolent lymphoma.  He asked me to think about it as a hitchhiker in the car I am driving through my life.  Most of the time this hitchhiker will sit quietly in the back seat. Occasionally, he will become badly behaved and fiddle with the radio. When this hitchhiker decides he gets to control the tunes we will take action to push him to the back seat again.  Dr Leonard repeated the standard phrase I have heard many times now — “You will die with Lymphoma, you will not die from Lymphoma.”

We talked about how we will make the decision to treat this illness.  He said there are three outcomes he uses when deciding to treat an illness.  1) To cure the disease 2) to make the patient feel better and 3) to help the patient live longer.  Since follicular lymphoma is not considered curable that outcome is off the table.  I do not have any symptoms and feel just fine so that is also a non starter.  Interestingly, longitudinal studies that compare patients who are treated early with patients who wait to treat until they have symptoms show there is no clinical advantage to early treatment of follicular lymphoma.  Dr. Leonard said while it is impossible to tell, in all probability I would continue to need no treatment for a few years.  If my nodes start to grow or if I start to have classic lymphoma symptoms then we would move to treatment.

What treatment would we do?  This is where the conversation got even more interesting.  Dr. Leonard told me he believes it is his job to work to eliminate the use of chemotherapy for treating lymphoma. He said there are numerous other drugs available to us and new drugs in development that are promising.  He said he would love to get me enrolled in a cutting edge clinical trial when the time was right.  For now they enrolled me in a study that involves them banking some of my blood for analysis at a later date coupled with surveys every 6 months over the next three years.  I am excited to help the researchers learn more about how to treat lymphoma better.

Dr. Leonard did give me a parting gift!  In addition to several books about lymphoma he told me that I do not need to have a bone marrow biopsy at this time!  He said he would probably order one when I need treatment but at this time he thinks I do not need to have needles poked into my bones.  What a relief!

I plan to continue to see my local oncologist because I trust her and her office is calm.  Dr. Leonard’s practice is an hour from home and the office itself is crowded and slightly chaotic.   I am thrilled to have added the wonderful Dr. Leonard to my team.  He is more than willing to consult with my oncologist and answer my emails and phone calls.

I am too tired to proof read this so please excuse the typos and random bits of unintelligible text.

Anticipating a Second Opinion – What to ask the Doctor about Follicular Non Hodgkins Lymphoma

My second opinion appointment with Dr John Leonard, the Lymphoma rock star oncologist, is on Tuesday.  For a long time I was looking forward to meeting him and hearing what he has to say about my illness.  I am well-educated at this point and unless there are surprises lurking in my blood chemistry which my team missed, I have a good sense of what Dr Leonard will say.  I think.  Maybe.  I hope.

I am starting to get really anxious.

Yesterday, I asked Nicholas what questions he had for Dr. Leonard.  He said he wants to ask what my prognosis is and what we need to do to keep me alive.

Um. Right.

I  spend a good amount of mental energy pushing away thoughts of “what if?” and “what will happen?” and “I don’t want to die.”  It isn’t that I believe a good attitude will keep me healthy, although “everyone” says you have to “want to win” and “fight.” Did you ever notice when we talk about cancer we use all kinds of war/sports metaphor?  Its weird.

I maintain a positive attitude because it helps me forget I have cancer.   Denial is more than a river in Egypt my friends.

I want to talk to Dr Leonard about a treatment plan. I want to discuss interesting new treatment possibilities like Radioimunotherapy. I want to talk to him about the possibility of participating in a Clinical Trial. I want to talk about the many, many treatment options available to us and I want to talk about the timing of beginning to do something about the beast lymphoma.

I don’t want to talk about my own mortality.  I don’t plan on dying any time soon.

Let the games begin! Its time for a bone marrow biopsy

Last night I had a bad case of  ”I don’t want to go to the oncologist tomorrow.”

I remain blissfully asymptomatic and feel as physically fine as I did before my diagnosis. That is to say I should exercise and I should lose 30 pounds or so.

But now, every time I notice a bruise or feel an ache or sneeze I have to decide if this is a normal bruise or ache or sneeze or if it is cancer breathing down my neck.   Most of the time I ignore those nagging fears but doctor’s appointments force me to remember I am a cancer patient and not just a middle-aged mom of two.

My appointment today was fine.  My blood counts look good and my oncologist said my lymph nodes seems stable. The plan is to go see Dr. John Leonard next week for a second opinion.  His office is looking at my pathology slides and will do a complete review of my medical records.  Unless there is major disagreement with my Oncologist, we will  do a CT scan in January to see if my nodes have changed.  At that time we will make a determination about what to do next.

Because this journey is SO MUCH FUN, my sweet doctor had to throw one little treat into the mix because what would an oncologist visit be without more tests or medicines?  She wants to do a bone marrow biopsy to see if the lymphoma has spread to my bones.   I have talked to people who have had this procedure.  It has been described as “not that bad” and “really, really fucking painful.”

“Great!  Looking forward to my bone marrow biopsy” said nobody, ever.

The thing is, it doesn’t matter too much if the lymphoma has spread to my bones. The treatment remains the same and the disease responds well to treatment even if it has spread.  It would be hard to imagine lymphoma not spreading as the cancer cells exist in the blood stream, which is after all the highway system of our bodies.  I expect lymphoma in my bone marrow — the question is how much?  I guess if my bones are full of lymphoma I may move to treatment and end this frustrating watch and wait.

It is really weird to have cancer and know it could be growing. Maybe my disease is stable and not progressing. If so, I don’t need treatment yet.  At the first sign of progressing disease I promise will be taking action.

I don’t care what poison I have to ingest I am coming after you lymphoma.

Learn more about indolent lymphoma

I came across a great podcast by Betsy de Parry, a NHL Survivor and Author of The Roller Coaster Chronicles   She interviews Rebecca Elstrom, MD, Assistant Professor, Division of Hematology/Oncology, Weill Medical College, Cornell University.  The podcast is over an hour so be warned, but the conversation helped me understand my disease better so I thought I would share.

You can find the podcast at this link.

Open Enrollment, Health Insurance and Having Cancer

Every year those of us lucky enough to have employer sponsored benefits have to suffer through “Open Enrollment.” During this period we pick our insurance coverage for health, life , dental and a number of other complicated government programs related to setting tax-free money aside to pay for things like child care and out-of-pocket medical costs.

True confession:  I supervise the HR department on our campus and the ins and outs of our benefit plans confuse the hell out of me.  I never know which is the “best” choice because to be sure I would have to be able to anticipate, for example, I was going to be diagnosed with lymphoma.  I always thought about health insurance as something I would need “should the worst happen.”  Hello worst!  Not so nice to meet you.

Now that I have a serious illness I seem to be unable to open the  Open Enrollment booklet.  I am afraid to think about my health care needs over the coming year.  I need to put pen to paper to calculate the potential expenses I will face for a treatment plan yet to be defined.  So, the booklet sits unopened on my desk.  For weeks I hae put my tea cup on it and pointedly refusd to read a word.

Still, I better get to it as the deadline looms and once Open Enrollment ends I can’t make changes to my plan until next year.   Fear?  Be gone!  I have options and choices to make.

~~~

I know I am lucky as hell to have health insurance.  I  have had the enormous comfort of having a generous insurance plan and access to great doctors while I was going through the diagnosis process.  I never once had to think “can I afford to pay for care?”  Not once.

I am one of the lucky ones.

The number of people in the United States of America that do not have health care is a national embarrassment. The number of people who are impoverished because of illness is a crime.  Is crime too strong of a word?  No.  I believe it is a crime that we can be so wealthy and people who get sick and their families appear to be disposable.

It is a crime.

Hopefully “Obamacare” will change the availability of health care for everyone in this country.  Hopefully.

Dreams, sleep and the new normal

Sleeping is not one of my skills. For years I have had degrees of insomnia ranging from “I am tired” to “Please kill me now.”  It all started when I was pregnant and  a mix of anxiety, pregnant belly and indigestion made it so I could only sleep in two or three-hour spurts.   Life with one newborn and shortly thereafter life with a two-year old and an infant are just not conducive to sleep.   Somehow, I have made insomnia a lifestyle.  I don’t recommend it.  I am tired all the time and I never sleep long enough to have dreams.

Fast forward to being diagnosed with lymphoma and I am sleeping a bit better.  I don’t exactly know why but I am waking up less and I have started to dream.  For the most part I don’t remember my dreams but occasionally I have quite vivid memories of smell and colors and music.  Last night was one such dream.

It started with a phone call from a friend I have not spoken to since I left for college and in so many words said to her “I never liked you that much, I am going to start a new life and I am never coming back to Rockland County. Good bye and fuck you.”

(I was an ass at 18.  Let that be a lesson to you kids!  Life takes you on strange and circuitous routes and you never know where you will land. Sometimes you will alight 3 miles down the road from your childhood home.  If you have successfully alienated your high school friends you may be in your home town and not have the social network that typically comes with that tradition, which may or may not be a good thing.)

In the dream my old friend called me to say her son had died suddenly and she really needed me to join her at her house right away.  In the next scene I was helping her husband Mike clean out an upright freezer while her  son was in the next room, dead, still hanging from the noose he used to take his own life.

(This my subconscious combining me cleaning my freezer after hurricane Sandy and an episode of The Tudors I watched last night on Netflix, I am sure.  How my high school friend’s son committed suicide in the middle of this mess I am less clear about.)

Next I was riding a monorail with a bunch of people from high school who I hated at the time. During our trip to the top of a skyscraper I figured out they were amazing people after all.  I didn’t want to tell them the top of the skyscraper was encased in dense fog because of course, our friends’ son had just died and was still hanging by his neck and it would be all too much to take. The fog and the dead son.

(I am not making this up. This was my actual dream)

Then I heard music playing and we were at the funeral.  The priest was walking down the aisle of the church slowly wafting the amazing smelling incense used at Catholic masses but he appeared to be a member of the Church of England.(more Tudors!)  My friend and her family walked in behind a casket but oddly enough her dead son was walking with them.   Then we had a party with amazing vegan food.

The end.

Maybe I was better off when I didn’t dream?

Sandy was not nice to us

This has been a hard week for many people.  By comparison to many we are lucky.  No one died and our home did not wash into the ocean.  I am grateful.

Having said that?  Our roof is damaged, we lost 4 large old trees, our gazebo is flattened and a total loss.  Nicholas’ canoe flew across the garden and is damaged.  We have not had power since I can’t even remember when and the estimate for when we will have power remains 11/11.

Having said that?  A friend lent us a generator so we have had power for a few hours each evening, which honestly makes the difficulties manageable.  I am still trying to think of the perfect gift for our friend. Baked goods seem hardly good enough.

I have been thinking about what it would be like if I was in the middle of chemo during a bad weather situation like Hurricane Sandy. I imagine the added stress would be difficult.  My appointment with Doctor Leonard was cancelled and I was sad about that but having to reschedule is an inconvenience, not a matter of life or death.  I guess everything is just harder with cancer.

I hope to be back to regular posting once we get power and life returns to whatever normal is these days.

Much love to you all…