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Tumor Dissolution – Week 1

On Saturday I allowed myself to have the thought – This isn’t really so bad, I think my body is handling all of this well…

What a difference a day makes! Sunday I received my first hit of side effects. I attempt to keep a open, curious attitude to what are happening within my bodymind. The symptoms were like nothing I’ve ever experienced before, when comparing it to past illnesses or conditions. I found it difficult to swallow, I noticed little tingles of nerve signals bouncing around my body, and strange waves of odd mentation or emotion peculating through my awareness.

I am fully aware that what I am perceiving is a 1 out of 10 on the overall side effect scale. I participate in several forums with PMBCL cancer patients undergoing the same treatment as I am and some of their tales of suffering will tear your heart out. Friends have told me its best not to ‘tell yourself stories’ or to anticipate side effects and other negative aspects of treatment, however I actually know for myself that understanding the possibility of a side effect prepares to meet and embrace it. The most anxious memories of my life have been when something is happening to the body that I cannot link to any clear cause. Ironic, that this is basically the big pickle I am in now (having a cancer of unknown origin), but let’s take it one piece at a time!

Backing up a bit, I started my treatment on Monday and then the week went through a familiar routine of insomnia, morning mania (the prednisone high which involved house cleaning and sending tons of messages!), preparing for the daily trip to the healing center around 2pm and then coming home with my father to enjoy some dinner and premiere league soccer in the lazy boy. This was all happening while connected to a bag of chemo and a pump that would deliver a few milliliters of concentrate directly into my right subclavian vein. Buzz, buzz, buzz, the pump would quietly remind me of my healing process every 15 seconds or so. I liken the process to having a small dog on a leash connected to you for 96 hours straight, with about 5 or 6 feet of give. Need to go to the bathroom? Take the dog. Want something to drink? Take the dog. Take a shower? Don’t even bother! ha.

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Three or four times during the week I lost all awareness of the bag and jumped up to do something only to be kindly reminded by the pull of the needle poking into my chest port. Luckily I didn’t pull hard enough to tear it out! Usually when moving around I would wear it as a backpack or fanny pack, only unhooking it when sitting or lying down for long periods.

The week itself was a bit of a blur – daily trips to the infusion chair, late night insomnia and Netflix, my father working on projects in my apartment. One day after a small snow storm, my Dad and I took a walk on a brilliant sunny, snow stretched day. My Dad was so helpful and kind to me all week – anticipating my needs, driving me around and even finding time to tackle some plumbing projects at my house!

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I have many fond memories of the helpful nurses at the healing center – answering my questions, fetching me warm blankets, explaining in so much detail what they were doing when changing infusion bags or medicines. I am so very grateful for the care that I have received over there. Just now, as I type this one of my favorite nurses called just to check in on me, to see how I fared over the weekend.

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Another auspicious aspect to this week was the maha shivaratri festival, which is a yearly event celebrated primarily in Indian culture dedicated to worship of Lord Shiva – one of the goals of a practitioner is to remain awake all night, chanting, meditating and praying throughout the night. Luckily I had an advantage with my prednisone! And those early morning, candlelit hours in my meditation room were very sweet and intimate.

Friday afternoon I met with the main nurse to go over my blood counts and to get my final infusion for the weekend. My blood counts are good so far, meaning that I am responding well to the chemotherapy and am not yet at a high risk of infection. I went into the infusion room around 3:30pm and almost every chair was taken and the room was full of commotion. Slowly, slowly, the room cleared out, the sun was setting over the mountains and I was the last one remaining in the room with the two remaining nurses. The final few drops of my chemo entered my IV as I listened to this beautiful track (click to listen):

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Tears streamed down my face as the remaining light faded, my first five days complete, my inner warrior relaxed. Free and vulnerable and grateful. Eternally grateful.

Om Namah Shivaya

Two Hearts

Have you ever wondered what the dimensions of the human heart are? As I reopened a study of anatomy to understand what is happening with my recent diagnosis, I noticed a coincidence – my tumor is approximately the same size as my heart, sitting a little bit to the left (sorry Ramana!). The human heart averages about 11cm x 8cm x 6cm. My tumor is 9cm x 8cm x6m. Throughout the last month and during my first days of chemo treatment I’ve had plenty of time to contemplate this auspicious similarity. A total coincidence? For me, in this lifetime, probably not!

This healing journey for me is expansive. For sure it includes the chemotherapy treatment to reduce and eliminate the malignant b-cells in my body (as my little backpack attached to my chemo port has been reminding of since Monday). And it also includes the aspects of existence that may have contributed to stagnant energy in chest, to a blockage or otherwise karmic message coming through this process.

Keep in mind as I write this, I am sharing my own explorative investigation into this more internal and deeply personal relationship with myself and my life, I am no means expressing any certainty or expressing any master or knowledge on these topics! My background in yogic teachings and healing already led me down a certain direction with my spiritual self-diagnosis. First signs of the disease? A large tumor on the left of my chest (meaning the more receptive, feminine, yin aspect, and close to, nearly touching my heart.

Over the past weeks, I have briefly eluded to several of these explorations and words of from other spiritual healers. First was Louise Hay, also known as one of the founders of the self-help movement. Her first book, Heal Your Body, was published in 1976, long before it was fashionable to discuss the connection between the mind and body. Her remarkable book tries to make connections between physical, emotional and mental aspects of disease. For cancer, she describes something like a deep hurt or a longstanding resentment. Or even a deep secret or grief eating away at the self.  This can manifest in carrying hatred to having a “What’s the use?” attitude. For most ailments she offers antidotes or affirmations that help us reverse the trend in our minds. For cancer, hers is: I lovingly forgive and release all of the past. I choose to fill my world with joy. I love and approve of myself.

Louise specifically correlates lymphomas with:

A tremendous fear of not being good enough, a frantic race to prove one’s self until the blood has no substance left to support itself.

As I’ve explored around my own heart and soul and bodymind connections, this one lands strongly for me. During my early symptoms of cough, many people would suggest I look into grief or despair that is often correlated with the lungs and chest, like not feeling worthy of living life fully. However this never resonated strongly with me. When I look hard, I can find some grief around lost relationships, or the loss of my spiritual community last year, but none of these are overly pervasive.

Intuitively I knew my struggle was more fundamental, on the level of giving and receiving, on being full worthy and accepted in this world.  (Side bar: I am compressing about five years of shadow work, therapy and self reflection into one paragraph!). This not being worthy is not like some kind of shadow that follows me around like a depressed cloud all day. Its more the opposite, it has propelled me in life – rather than ever allowing myself to be exposed in full vulnerability, openness or fear, I move forward in word and action and avoid exposure. The lone wolf, not relying on others, not needing anything. It is far easier and safer to meet the world alone, detached, aloof, and stoically.

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Recently I have been enjoying the book, The Gifts of Imperfection by Brené Brown where she shares :

One of the greatest barriers to connection is the cultural importance we place on "going it alone." Somehow we’ve come to equate success with not needing anyone. Many of us are willing to extend a helping hand, but we’re very reluctant to reach out for help when we need it ourselves. It’s as if we’ve divided the world into those who offer help and those who need help. The truth is that we are both.

Intellectually I am fully aware that I am completely interdependent on the world around me, that I am dependent on so much and so many others, out there. However there is a a big difference between being aware of this and actually enacting it in daily life and relationships.

‘I’m fine’ has probably been the main mantra of my life.

And if I have learned anything in this last month, it is certainly that I am NOT fine, that I am utterly reliant and dependent on the gifts, offerings, support and love of others. What has appeared so powerfully for me in these weeks of diagnosis/prognosis/treatment has been the outpouring of support, unconditional love and friendship from people that I genuinely did not expect. 

I have offered so little in the past – why is it being offered back to me??

This is my current contemplation and reflection, also considered by by Brené Brown:

Until we can receive with an open heart, we’re never really giving with an open heart. When we attach judgment to receiving help, we knowingly or unknowingly attach judgment to giving help.

Most people in my life will describe me as warm and kind being, very capable of love and care. What is not seen, possibly, is my inability to receive that very same love and care from without. To deeply, fully, profoundly receive it.

With deep humbleness and gratitude I continue to be thankful for all that I am receiving – my words are only a fraction of acknowledgement for what is appearing in and through and beyond this experience, for this mystical dive into the opening of my heart.

To be continued…

Chemo Day # 1

It is nearly 3am and I’m lying bed, fully awake after my first day of treatment. My chemo pump lies next to me, making a buzzing sound every 15 seconds as it infuses me with a orangish-pink ‘cocktail’ of Doxorubicin, Vincristine and Etoposide. I would have preferred a margarita, and certainly would have slept better!

During the 5 days I’m receiving the chemotherapy, I take a high dose of a steroid called prednisone, twice daily. This is likely the culprit of my insomnia. It’s a wired type of insomnia. I spent the last hour double-checking all the dosages I am receiving which are based on my body surface area – achieved by multiplying your body weight (in kg) by your height (in cm), dividing by 3600 and then taking the square root of that. Mine is about 1.88 m/2. Just in case you were curious, ha! And I confirmed the docs are giving me the correct dosages for my first round .

And at least I also have the time to write about my first day. My father accompanied me to the healing center (I’ve decided to call it this, rather than the cancer center) for an 8-hour day. I had a big bag of all the things you are supposed to bring on your first chemo day – water, tea, snacks, blankets, headphones, etc., etc.

The most senior nurse was assigned to me today, which I appreciated. Today’s treatment involved getting a long, slow dose of a drug called Rituxan. It’s not actually chemotherapy, rather a type of antibody therapy that finds and attack the cells with the CD20 protein found on the surface of the cancerous B-cells in my tumor and in my blood. About 30-40% of people have allergic reactions to Rituxan and this is why it’s administered so slowly.

The first needle was poked into my chest port and I was given anti-nausea meds and Benadryl through the IV. Then came the Rituxan, starting from 50/ml an hour and slowly building up to 400/ml an hour… and lucky me, NO allergic reactions! 

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I fasted for about 40 hours before starting treatment today. There is a fair amount of research coming out lately showing how fasting helps the healthy cells in your body resist the toxicity of chemo: Here, here and a video here. When fasting over 24 hours, normal cells go into a kind of protection mode whereas cancerous cell don’t have this capability. Just don’t tell your oncology nurse this. I did and she got really serious and scolded me – ‘You MUST eat before chemo!’ and she suggested I send my dad downstairs to get me an egg sandwich. I politely passed and realized that I’ll need to keep this one to myself.

Throughout the morning, I listened to delta brain-wave tracks and did visualizations of the medicines dissolving my tumor. I visited a bit with a few of the other patients, I meditated, and at some point the Benadryl put me to sleep for a little while. The time passed rather quickly – a highlight was when a group of three women sat down in front of me and sang songs and hymns for about 20 minutes. They were volunteers and it was so touching, sweet and comforting to receive. I hope they’re there every day when I am!

Eventually I completed the course of Rituxan and the nurse came back with the cocktail and chemo pump that will be connected to my body through my chest port non-stop for the next 96 hours. She explained how to use it and I threw it over my shoulder (it’s pretty big, like the size of a small messenger bag), and headed home with my dad.

None of my initial fears materialized, and I am glad that I was able to get underway today. I’m very grateful for my father’s presence with me this week, and for the dozens of supportive and heart-filled messages I received today. ❤

View from the healing center:

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To be continued.

Surrendering to the Process

Today I picked up six prescriptions at the pharmacy. I have not cumulatively picked up that many in the last ten years. I received a flu shot (those that know me know how needle resistant I am!), and tomorrow morning I’ll have one of these pretty little gadgets surgically installed into my chest. I haven’t even shared much about the bloodwork, heart testing, meetings and consultations I’ve been through this week. Monday morning I’ll be sitting in the cancer center receiving my first dose of chemotherapy, which will initiate the next step in my healing journey.

Can one ever be ready for something like this? I doubt it. I considered tip-toeing in order to delay my start by one week, however the advice I received and my own intuition all pointed to starting as soon as possible. Sitting with the anxiety and unknowns of the treatment is probably worse than the treatment itself.

My father flies out on Saturday to be with me for the first week. I have a crew in place to help with meals and extra rides, and and as far as I can tell, nothing else is preventing me from beginning.

After my meltdown post on Tuesday, I received some very, very powerful, healing and support energy from so many of you. I continue to be deeply touched and infinitely grateful for what all that I am receiving. One friend guided me in a visualization healing journey connecting with spirit, an unveiling process that I will speak to soon, as it impacted me profoundly.

To be a Sufi is to give up all worries and there is no worse worry than yourself. When you are occupied with self you are separated from God. The way to God is but one step: the step out of yourself.

                                               ~Abu Sa id ibn Abi-L-Khayr

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Primary Mediastinal B-Cell Lymphoma (or PMBCL for short), is a very rare form of cancer. At this point, I think I have found and read every article or scientific study written about PMBCL. There are not that many in fact, as it was only designated as its own entity in 2008 (prior to this it was simply considered a form of DLBCL – Diffuse large B-cell Lymphoma).

This post will be very technical. For those who are interested in the scientific aspects of what is going on inside of me, read ahead.

Introduction

Primary mediastinal B-cell lymphoma (PMBCL) is a cancer of mature B-lymphocytes. It is a form of non-Hodgkin lymphoma, which is a type of cancer that originates in cells of the immune system, called lymphocytes. PMBCL usually starts in the area of the thymus, in a part of the upper chest called the mediastinum.

PMBCL constitutes approximately 3% of all non-Hodgkin lymphomas. It affects mainly young adults (median age of 35), predominantly women, with a  (female/male ratio of 2 to 1). No risk factors(viral, genetic or environmental) for PMBCL have been identified to date.

How PMBCL is Identified

PMBCL typically presents as a large, fast-growing tumor with invasion usually limited to the anterior-upper mediastinum although it tends to infiltrate adjacent thoracic structures like the chest wall, pleura, lungs, pericardium, and heart causing pleural/pericardial effusion in approximately 30–50 % of cases. The disease is mainly locally advanced, meaning that it tends to spread to nearby lymph nodes, but not to other parts of the body. Enlarged lymph nodes localized outside the mediastinum are rarely found. Bone marrow infiltration is seen in few cases, but usually rare.

80% of patients have clinical stage I and II and 75 % of them have bulky disease with a tumor mass exceeding 10 cm. I was fortunate in that I caught mine earlier than most people, with a tumor size of 8.5cm and without the many symptoms below other than a chronic cough. I am technically stage II, due to several nearby lymph nodes also being affected.

Typical symptoms such as cough, rapid breathing, vein thrombosis, chest pain, or painful swallowing are related to the tumor mass, with a history of complaints for usually less than three months. Approximately half of the patients present with upper vena cava syndrome, a medical emergency that happens when blood flow through the superior vena cava (svc), a major blood vessel to the head, is obstructed.

Systemic symptoms, mainly weight loss and fever, are relatively rare and they affect less than 20 % of patients. These are referred to as ‘B’ symptoms in Lymphoma, and for example, if I had night sweats and fever, I would be classified as Stage IIB.

Pathology

This is a very complex area where scientists get down to the molecular level of the tumor cells – its also an area where a lot of modern research is focused on. Pathologists use something called lmmunohistochemical stains to test the tumor cells and see if they are positive or negative in order for them to identify the type of cancer. In my case, for example, I am positive in CD20, CD23, CD30 (these are just 3 of about 15 markers), which helps the pathologist identify the cancer type and differentiate it from others. If this isn’t enough for you, read more about this process here. Below is an image of PMBCL under a microscope.

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Prognosis

PMBCL is a curable cancer. Given that it is quite rare, there is not a tremendous amount of data about survival rates, but there is some. It has also greatly improved since the introduction of Rituximab, a type of antibody therapy that targets and attaches to the CD20 protein found on the surface of blood cells with cancer. In 2012, one study showed an overall survival (OS) of 97 % and
progression-free survival (PFS) 89 % at four years. A more recent study, which promotes the newer, more aggressive chemotherapy regimen I will be doing (DA-EPOCH-R), followed 51 patients for an average of 5 years. They had an event free survival of 93% and 97% overall survival rate. Only three of the 51 patients had evidence of disease after chemotherapy.

So the outlook is good, although not perfect.

What are the treatments for primary mediastinal B-cell lymphoma?

PMBCL has a protein, called CD20, on the surface of the cancer cells. Rituximab is an immunotherapy drug that targets the CD20 protein. Modern treatments for PMBL include rituximab, along with chemotherapy. Traditionally, radiation therapy has been part of treatment for this disease, but as the last study linked to mentions, the use of DA-EPOCH-R often eliminates the need for post chemotherapy radiation. Read more about DA-EPOCH-R compared to other treatments for lymphoma here.

The most commonly used treatment regimen for PMBCL is called dose-adjusted EPOCH-R. This chemotherapy regimen is given as a 96-hour long continuous infusion into an intravenous line, once every three weeks for six courses (18 weeks total). The doses of the chemotherapy drugs are adjusted according to blood tests that are done in between treatment courses. The drugs that are included in this treatment are etoposide, prednisone, vincristine, cyclophosphamide, doxorubicin, and rituximab. A drug called filgrastim is used to help the body’s white blood cells recover quickly after each course of chemotherapy.

My Treatment

I will receive the first cycle of the DA-EPOCH-R treatment starting on Monday. DA-EPOCH-R has been shown to have a higher cure rate than previous treatments, however it does come with a higher risk of toxicity. DA-EPOCH-R’s other advantage, and why it is now the preferred treatment (at least in the US), is because using radiation post-chemotherapy creates long-term issues and secondary cancers (remember the average diagnosis age is in the 30s). DA-EPOCH-R has been shown to eliminate the need for post-chemotherapy radiation in the majority of patients.

The first 5 days out of every 21-day cycle, I will be going to the treatment center to receive treatment. When I leave on Day 1 and until I complete Day 5, I will have a chemo pump or infusion pump that I will take home with me to keep me company and remind me of all the healing I am doing!

If all goes according to plan, my last day of chemotherapy will be on June 5th, and I’ll complete the 18 week treatment program on June 22nd. 6 weeks later I’ll do another PET Scan, discover that I am cancer free and on my way to a full recovery!

Reality Sinking In

Today I had my first big meltdown since this process began a month ago. I cannot point to a specific trigger. I visited the Rocky Mountain Cancer Center in Boulder to get a second opinion on my treatment and to look around the facility. As I spoke to the doctor, I felt myself in a haze, not prepared with my questions, my heart racing, feeling the momentum pulling me towards that chemo chair next Monday.

I think the totality of what I’m about to do set in. This, combined with the frustration of my freedom being taken away was enough. I canceled my 4 week trip to Thailand. I said no to a beautiful woman who wanted to connect with me. Some aspects of life will go on hold for at least six-months.

I consider delaying the treatment another week, but I am starting to see that the anticipation and waiting is probably worse than the treatment itself. I continue to be moved and touched by people reaching out with their support and love.

Soon I will write a more about my treatment plan, but for now I just needed to express my humanness.

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Finally… a Diagnosis!

I think this will be the final installment of my diagnosis process, and then I will start writing about the considerations and choices that follow it.

As I mentioned in my last post, the nocebo effect is at work again. Told that I likely have lung cancer, I dive into the Google-sphere and restart the horrible process of self-diagnosis. This, all in spite of the fact that all of my intuition was telling me that the tumor I had was not in my lung, rather that it was pushing into the lung from outside. If you have to pick a cancer to deal with, lung cancer is certainly not it. While a tremendous amount of advances have been made in the past decade, it has a low-survival rate. And my whopping 8.5cm grapefruit would have landed me straight into Stage IIIa – which gives one a 33% of living 5 years after diagnosis. See why I said not to Google this stuff!?

The next Tuesday I am back in the hospital, same day, same time, same nurses, same doctor. I experience a lot of déjà vu happening this day as I go through the procedure (much easier to sign the form saying I may get a pneumothorax or die!). The doc ensured me that he had a better idea of where to biopsy my tumor this time and that he would take more samples as a precaution. I was also given a little extra sedative and pain killer to avoid the OUCH that came last time. Everything goes smoothly, and before I know it, I am back at my house, sitting in the yard enjoying some winter sun. This day was remarkably different than the last Tuesday, as I felt no-post-procedure pain, more energy than normal and in general, the fog that had been clouding my mind and energy for the last week was lifted.

72 looooooooooong hours later, I am at the hospital with my sister to meet the oncologist to get the result. She comes in and quickly cuts to the chase:

You have a B-Cell Lymphoma -  specifically something called Primary Mediastinal B-Cell Lymphoma (PMBCL), a rare non-Hodgkin’s lymphoma that tends to effect people between 20 and 40. It’s very treatable and has a good cure rate, and has a much better prognosis than Lung or Thymic cancer.

I breath a big breath out…. in ALL that googling I had done over the past 3 weeks, not once did I even consider lymphoma, despite it being one of the options. What a lesson in not getting ahead of oneself! In retrospect after learning more about this kind of cancer and its manifestations, it is a perfect fit with what I’ve been experiencing, feeling and noticing.

So I am suddenly in a state of not-knowing, trusting the doc that I do have a good prognosis feeling like I just dodged a bullet. Or maybe I just dodged ballistic missile! She explains that I will need a bone marrow biopsy to finish my staging and that the treatment will be chemo and radiation (both wrong suggestions, based on outdated information). She says from this point I need to see a hematologist/oncologist, as she is basically a lung cancer oncologist. I’m told that she has already spoken to this doctor in their system, who practices out of a small clinic in Golden, CO.  She politely takes the rest of my questions, wishes me luck and then I sit for a few minutes in the room, processing everything with my sister. The unknown is suddenly known, I have a diagnosis, a label, a treatment target.

Time to finally go home and Google this PMBCL!

This is January 31st. 24 days after my initial chest x-ray.

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