Friday, December 28, 2012

Good News is ... GOOD NEWS!

A PET/CT Scan Made Me Write Again

The greatest pleasure I can enjoy during a clinical examination comes when I get a sneak peek at my results before anyone else has officially seen them. After being a patient for over 7 years, it is no real secret to me what my numbers mean about my condition.

Last week we were looking at a super high-tech image: a misty 3D silhouette of a complete tiny little 'Me.' Everything was visible in various shades of grey in a six inch figure on a high resolution computer monitor. The system expert, Chris, gave me the full show. He rotated it, changed shading, revealed my organs, hid them again, flipped me horizontal and browsed through the slices like a library book. All the vessels, tendons nerve fibers and fluids were right there.

Nothing could hide from the combination of magnetic and radiation sensors.

What we were unable to find was any trace of myeloma. It is nowhere to be found inside me.

It is gone. 
My Cancer is Gone



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Backing Up Before Going Forward

Since I haven't been updating my blog for quite some time, I need to summarize a few things. How I remember my timeline goes like this: Back in August of '10, I got a new set of images that revealed five myeloma lesions. All were new. One on my left scapula/shoulder blade, one on my rib at about the height of my left elbow, one in the center of my spine on the edge of a vertebra, one in a vertebra of my neck and the other one on my right hip. I knew those places. Those were the places where I felt pain.


 At that time I had been with one doctor and his clinic since September '05. So I went to him when I could no longer hide and ignore my symptoms. Right from the very first appointment Dr S, my oncologist, wanted to put me onto a pretty well established protocol for relapsing multiple myeloma patients. Right from the very first appointment in August, when I told him my symptoms, he said I should start it right away. I held out for three more diagnostic tests for almost three weeks until we saw the lesions.

Once those were discovered we both understood that the protocol he had by then been insisting upon starting {three times he had told me -- even ordered the medications and scheduled me for injections} would have been the wrong treatment.

The day I saw the radiologists notes of that PET scan was a hard day for me. At the moment I saw that analysis, I felt like a cloud had just lifted. So much I had feared and suspected was now true and known. Besides that I knew my doctor had been wrong; stubbornly wrong.

It seemed like I was alone on the field of battle and the only assistance I had was coming from my surgeon who could be heard shouting for me to moon my enemy.

No. That is not the way it was. Of course not.

His recommendation was not to shame my cancer into remission again. Not at all. Dr S just wanted to use a protocol which had been the one of choice for the previous several years. But research and results are moving fast in the heady oncology gold mine of multiple myeloma. I don't have my browser open continually with new material, but I do look for news fairly regularly.

I was already aware, as is he, that it had been superseded with a less toxic more effective approach.

Get Me A Doctor
I needed a new oncologist. I scheduled appointments and went for intake examinations and interviews with three of the best cancer treatment organizations in my area:
Hackensack Medical Center 
     -- In '05 they did my tandem autologous stem cell transplant.
Cancer Institute of New Jersey 
     -- CINJ is part of the ring of state Cancer Institutes across the US with a powerhouse of clinical investigators and an excellent track record.
Memorial Sloan-Kettering Famous
     -- Everybody's heard the name, so it must be great... right? I interviewed two of their top clinicians for a second opinion before my transplant. They are extremely well funded and attract and retain many of the finest minds and most challenging patients -- now they have a satellite hospital in Basking Ridge. I could have received treatment without having to go into New York City.

I ought to go into the values I used in making this decision, but I don't know if I can do it well enough. I was quite upset, worried, anxious and (take my word for it) I felt bad too. [somehow that last phrase makes it funny to me]

Round 3 - VRAD Chemo
Getting a new team and starting a new treatment took me from August to December 2010. My choice was to go with Dr Mecide Gharibo at CINJ. She is so incredibly bright, never brought up clinical trials and she is easily the best listener in a clinical setting I have ever met.

She understood my desire to use the best established protocol for my symptoms and my condition. We immediately started the treatment called VRAD: Velcade, Revlimid and Dexamethasone.

That went on for three months or so. Then I transitioned onto Revlimid "maintenance" protocol. We have been doing that continually until our family vacation in October. Since the drug effectually stops my production of new blood cells for twenty-one out of every 28 days, it would have been extremely risky for me to be vulnerable while traveling. So I got a vacation from my treatment -- and it became the finest vacation of my life -- easily the finest I have felt in over two years.

My energy levels were so high. I nearly stopped taking pain medication altogether since I didn't need it. (Since my primary pain med is methadone, that is not actually a quick, easy to act upon option) I slept easily and awoke rested. My body was my friend again.

It Could Not Last
Dr Gharibo was concerned that stopping the treatment would allow the myeloma to restart its progression. My wife wouldn't allow me to forget about scheduling an appointment with Dr Gharibo, who had begun calling me regularly to discuss my plans. When I agreed to restart, I did so with the understanding that I could get a new set of images. That is what we did last week.


What My Illness Taught Me
Here is what I am hoping to pass along to others going through a long term healthcare event.

First of All I Had To Learn
I got informed and I stay informed. That means a lot of reading and note taking and note keeping and organizing. My notes are poorly organized, so I guess I am not too good at this part of being a patient. Apparently from what my caretakers say, though, I am one of the better informed. I also privately record my conversations so I can be sure to understand what I was told. Having that information allows me to ask questions and participate in my care.

I do not just sit and let them 'Do Their Thing' on me. I ask for increases and decreases in my dosage sometimes. I ask for my test results and I read them and I discuss them and compare them with previous results.

There is no primary tumor to attack. The enemy has no headquarters. Myeloma is a cancer within my blood. When the medication is working, it is halting the process of cell regeneration. It is shutting down the life force of my body. If new cells are not developed new cancer cells will not develop either. So we fight by shutting everything down.

My biggest challenges have been with pain. Getting a handle on how much to take, when to take it, figuring out what activities or foods or situations were connected with increases / decreases in my pain and how can I handle my pain -- these are just a few of the angles involved. I never felt like I could take enough pain medication to control my pain. I either had pain or I was asleep. That was up until 2010.

Since then I have been much better off. For nearly two years, I have been under the care of a pain management physician, Dr Jose Isidro. He spent a lot of time talking with me. He gave me one epidural injections. He was also there as my anesthesiologist for another epidural injection by Dr Liu. A lot of this is seriously difficult to recall. Though I do believe that he asked me to come and to see him for a longer conversation about methadone.

Isn't That for Addicts?
I had only heard of it as a treatment for providing heroin addicts a way to manage their addiction without providing a 'high' for them. I have since come to find out it works superbly well for my condition. I have constant pain from the damaged nerves in my lower back. They were damaged when the tumor in my lower spine was so large in 2009-10. The methadone interferes with the pain signals. I don't receive signals on that channel anymore. At least I don't when I am careful to take my dosage regularly and on time.

The biggest contribution toward making that pain less troublesome is my relationship with Dr Isidro at Hoboken University Medical Center.

Then I Started Communicating
I opened up to my family and friends. I found out that I really do have friends -- tough ones! People who wear velvet gloves on their hard tough loving paws :-) They hear from me regularly about what is going on and how it's going. And over the past year or so, I found out that I have great people who love me and care for me and tell me what they would like me to do -- even if I have been resisting their suggestions -- even if I don't take their advice right away.

They tell me again and when I do try it, I give them feedback and learn how they developed themselves by doing the things they are encouraging me to do. So we start having more in common and it has been amazing for me to benefit from following the paths walked by my friends before me.

Accepting My Circumstances
This is the most emotionally distressful experience. Chemotherapy drained my drive. I lost a cognitive capacity. Thinking became muddled. I could not remember the steps of a task. It was typical to lose myself on every next distraction. I didn't nod off, I went to sleep and stayed asleep for horrible long stretches. Some days I woke up only because of the alarm reminding me to take medication just to be wanting to return to sleep because I needed to wait for the medication to reduce my pain before I would want to move around.  So many days have come and gone with me starting and ending without having done almost anything other than drink coffee, eat food and watch TV between naps. I am embarrassed by this as much as frustrated; maybe much more embarassed than frustrated.

This lethargy and dogged dullness is the thing I was most free from when I was off my medication in October and November of this year. When I was off the Revlimid -- I could think. My words came to me easily & my vocabulary was restored. My memories were clear and in color again. Desire and ability were in tune too. I felt great. Knowing I felt great was as important as the feeling itself.

How Can I Go Forward?
Will I always be on maintenance? I told my son about my medical protocol and that I was re-starting the medication that would make me weak and tired again. He asked me, "When will you be well enough that you don't need the medication anymore?"

He is a smart young man. He asks good questions.

I want to tell him we're doing this just one or two more times... but that is NOT what Dr Gharibo says.

Right now, I am at day 20 of another 28 day cycle. [I started writing this post 11 days ago] I take Revlimid (lenalidomide) for twenty-one days; pause for seven days; then restart on Day 1. Initially, in December '11, the dose was 25 mg per day. My side effects were too burdensome to continue, so Dr G reduced it to 15 mg then to 10 mg.

From what she has said from the very first interview I had with her, this is the standard and it simply continues. In a phone call last week, she said that she is considering another reduction in the dosage. She has been reading new clinical results that indicate efficacy even at 5 mg.

I hope she will share that information with me too. I really do enjoy learning as much as I can about this disease. I expect to beat down my body's failure to stop producing too many of the wrong type of blood cells. Once I knock that mistake out of my body, I am sure I could live a better life without it, so I am ready for it to end now.

One Request
If you have a moment, please leave a comment. It takes a lot out of me to put this all together. Please give me the benefit of your reaction, thoughts, encouragement, questions -- anything at all from you would give me a big lift.

That's all for now,
 - Mark

14 comments:

  1. Such great news! Thinking about you, Mark!

    Charlie Seymour Jr
    http://TheVideoMarketingGuys.com

    ReplyDelete
    Replies
    1. Thanks Charlie - you & I ought to get in touch again - I will try next week.

      Delete
  2. Great news Mark! Hope to see you in Estonia soon :-)
    I have one question - you write about modern medicine, but how about you (positive) thinking and faith?

    ReplyDelete
    Replies
    1. My interest in spiritual matters is very strong again. I am using new age mental and physical techniques too, but not regularly. That must improve.

      It would help if I had a training partner -- are you available?

      All my best,
      -Mark

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  3. Great column. It is the same set of decisions all of us with MM face. Thanks!

    David

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    Replies
    1. Where do you go for updates & new information David?

      My desire to know more is really fierce. Please PM me if you get this question.

      Thank you for the compliment too.
      - Mark

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  4. Hi Mark!

    It was sad to read about those brutal ways of dealing with cancer ("shutting down" your life force) in hope that "correct" processes are strong enough to resume once you stop killing them. Uhghh...

    Good to know you win again and have a gift of normal life ahead of you. It actually helps ME value my normal life better and appreciate what I have when learning about your struggle.

    You mentioned benefits of exercising in strengthening one's body. Please keep yourself moving a lot! One possibly pleasant way to integrate exercises and good time with your wife is dancing till you sweat :)

    Cheers,
    Andrei

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  5. Andrei!
    Wow -- Long time!


    I get almost NO exercise. I miss it so much -- not even fishing!

    Stay in contact when you can,
    - Mark

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  6. Hi Mark,

    i'm really happy to hear such incredible news from You.

    my best wishes,
    Dani

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  7. I came across your blog - great post. Great news the PET/CT was negative!

    Just wondering... you wrote, "I also privately record my conversations so I can be sure to understand what I was told." How do you do that? Hide a voice recorder? Remembering everything that is said at appointments is so difficult!

    Take care,
    Elizabeth

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  8. Mark, I'm on 5 mg Rev (21/7) maintenance, and the difference between 10mg and 5mg is huge as far as fatigue, clarity, etc. is concerned.

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  9. Mark -
    As I read through this blog, I was struck by how our journeys through life take many different paths. We never know where we will go/end up. I probably am waxing a bit poetic as this year closes and we face new challenges with the coming new year. It is heartening that you have banished your cancer and are feeling better. May 2013 bring continued health and happiness to you and your family!
    Best Wishes from your past,
    Cindy
    (Larsen - Shannon)

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  10. Mark, Herdys and I are so happy to read the good news. Reading your way of dealing with the disease, the way you study it - wow! Makes me think back to the "DBA times" you marveled many of us with. Keeping our fingers crossed for you and hope to meet you again some time in the future either on this or that side of the pond. Best wishes to you and to your family!

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  11. I am glad to learn your MM has retreated.

    Best wishes for the New Year and continued good health.

    John

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