Life with Cancer

The title of the blog says it all. I was diagnosed with incurable, stage 4, metastatic prostate cancer on Friday the 13th (for real...), August 2010. My Oncologist said it was rare to have the disease be so aggressive at my age. Lucky me... In 2012 I finally decided to write about it when things started getting really serious. Up until then I had been living in a state of semi-denial because my health/cancer had been improving with treatment. All that changed when the beast came back to life (mCRPC) and started trying to finish me off... I’m still beating the odds but have no illusions about where this all leads. But I also live for the moment because the future is not written yet. I don’t think there’s much value in telling this story if it’s heavily edited. So be warned that occasionally some of the posts may be hard to read (and write!).

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I am still alive, these are some pictures from my wedding August 5, 2015.

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Don’t know how much more I have left

Going to hopefully start hospice tomorrow, maybe that will give me some clarity. I’m drifting in and out of the spirit world, sometimes I wake up and don’t know where I am. I will try to document the journey as I cross over. I am trying to be brave in these final days. Cancer has not won, Cancer will never best me. Nate, Rick, and Jackie, we will see each other soon. 

Mitakuye Oyasin (Mitakyasi)

Pronunciation: Mee-tah-koo-yay Oy-yah-seen

Meaning: Mitakuye Oyasin is a Lakota Sioux term literally translated as: “All My Relations.” The meaning, however, extends beyond that of the English translation to include not only human family, but all of the animal, plant and mineral kingdoms as well as the forces of nature (wind, thunder, lightening, etc.) plus the elements, in that we are all connected in the intricate web of existence, and that each is affected by actions of any other. Everything is interrelated —nothing exists in isolation.

Change comes from within —we find a better way as we learn to live wisely.

Mitakuye Oyasin!

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Please don’t be sad

These things will keep trickling out as I better organize my thoughts. 

I have lived an incredible life filled with wonderful and loving family and friends. I have lived many of my dreams and done and seen things that filled me with awe and wonder. I spent much of my time immersed in the natural world that I love so dearly. Despite all the ills of our society and world, there is much more good than bad. Go out and live, don’t be afraid. Try things you never thought you could ever do and put failure out of your mind. Embrace the true miracle that is everyday life. Always follow your heart and passion. We only have a short time on this earth. And never let anyone convince you that you can’t live your dreams, that is why we are here. Life is not always easy but every moment is precious, the good and the bad. And above all things, never stop loving yourself.  

Please don’t be sad for me, I am at peace and have no regrets. 

Greg-

When you realize the fact that everything changes and find your composure in it, there you find yourself in nirvana.

-Shunryu Suzuki

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My time is short

It was the worst possible news today and my entire team was in tears.

I will know more early next week, but we’re talking weeks to maybe a few short months. 

My advanced directives, will, and power of attorney are all in place. No historic measures allowed, no hospital stay at the end. I will die as I lived, free and hopefully under the open sky. 

I can not express how deeply the friendships I have made through this place called Tumblr have come to mean to me. Many of you have become like family.

I will add more details as they present themselves. Monday is a procedure to confirm the small cell diagnosis. I have refused palliative chemo. But not palliative care in general... 

Patti and I are working on plans for the short-term. I may undergo a short radiation session to help control pain and get better mobility. Beyond that, just going to keep living and soaking up this beautiful place I live in. 

Thank you for all of the love and support my friends, it has meant so much to me.

Greg

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Remission is over...

Im not ready to lay it all out yet but I may be fighting to stay alive in short order. Many more appointments and a biopsy very soon. But it may be small cell mutation that got into my liver. Do yourself a favor and don’t Google it...

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Scanxiety & Ativan

Tomorrow I have a full morning of “rule out” imaging... As in rule out some nasty small cell (scare the fuck out of me!) mutation that would be a death sentence...

First up, Nuclear bone scan radiopharmaceutical shit injected into my veins. Yum. This requires a 3 hour wait after the injection before the scan. So in between, I’ll get a chest X-Ray, followed by a CT with contrast. In order to do the CT, I have to pre-medicate with 150mg of Prednisone to ensure that I don’t stop breathing from Anaphylaxis... Then 30-40 minutes in the bone scanner trying to lay perfectly still and not have a claustrophobic reaction to the tight confines. Or squirm from my lower back pain that has been a full-on bitch lately. 

So, your intrepid guide to all this fun is going to be doped to the max on Ativan. And I thought today would be a perfect trial run... I’m not too big on the hard stuff, I really don’t like giving up control. But since this is damn close to my 5 year diagnosis anniversary, I need all the help I can get. Freaking out barely scratches the surface of how I feel today.

Please burn some sage or whatever you do to invoke the higher powers, I need all the good vibes I can get. Either this will be nothing or something too horrible to contemplate.

Update when I get it-

g.

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Secretary of Health and Human Services: Protest High Cancer Drug Prices so all Patients with Cancer have Access to Affordable Drugs to Save their Lives

A. Background • Cancer drug prices are increasing at an alarming rate (1), which is causing harm to patients. • Prices have increased more than tenfold (2) between 2000 (average price $5,000-$10,000 per year) and today (average price of new cancer drugs exceeds $120,000 per year). • The average price of cancer drugs is increasing by about $8,500 (3,4) a year. The average household income today for a family of four is $52,000, down 8% from a decade ago (5). • Even patients with insurance have out-of-pocket expenses of 20-25% (6). Since each American has a 1 of 3 lifetime chance of developing cancer, every one of us is at risk of being unable to pay for the prescription medicines that will control and cure our cancer. • This could force many families to decide whether to pay $25,000 a year for one cancer drug, about half the household income, or forgo the treatment to save the money for other necessities. • The high price of cancer drugs is causing harm (7) by shortening the lives of patients who cannot afford the treatment. This is an injustice (8) that creates differential treatment conditioned by financial status. B. Petition We request that our President, the Secretary of Health and Human Services (HHS), and all Members of the United States Congress, consider our petition and protest against high cancer drug prices by implementing the following strategies: 1) Allow Medicare to negotiate drug prices by removing all current legal restrictions. Allow Medicare to have the same right to negotiate drug prices as the U.S. Department of Veterans Affairs now enjoys; 2) Allow the importation of cancer drugs across U.S. borders, for personal use. Prices in Canada are sometimes close to fifty percent less than what we pay for the exact same cancer drugs in the United States; 3) Enact and sign into law, new federal legislation that prevents drug companies from delaying access to generic drugs (“Pay-for-Delay”) and extending the life of drug patents (Patent “Evergreening”); 4) Create a post FDA drug approval mechanism/organization/group/ concerned parties (that include the strong voice of patients and their advocates) to estimate/propose a fair price for the new treatment, based on its value to patients and health care; 5) Allow organizations such as the PCORI – the Patient-Centered Outcomes Research Institute (nonprofit, nongovernmental organization located in Washington, DC. created by the Patient Protection and Affordable Care Act) to include drug prices in their assessments of the value of drugs and treatments; 6) Request nonprofit organizations that represent cancer specialists and their patients - such as ASCO, ASH, ACS, LLS, and NCCN - develop guidelines to incorporate prices of drugs relative to treatment value. C. Conclusion • In the United States, all cancer patients must have immediate access to affordable prescription drugs in order to save their lives. • We believe the measures as outlined above, will allow market forces to work in favor of lower cancer drug prices. This will provide all cancer patients with equal access to the best treatments now available. • We believe the measures as outlined above, will be fair to both the cancer patient and to pharmaceutical companies. • This is Justice. References 1. Kantarjian H, Rajkumar SV. Why Are Cancer Drugs So Expensive in the United States, and What Are the Solutions? Mayo Clin Proc. In Press 2/2015. 2. Kantarjian H, Steensma D, Rius SJ, Elshaug A, Light D. High Cancer Drug Prices in the United States: Reasons and Proposed Solutions. J Oncol Pract. 2014; 10(4): 208-211. 3. Howard D, Bach P, Berndt E, Conti R. Pricing in the Market for Anticancer Drugs. Journal of Economic Perspectives. 2015; 29(1): 139-162. 4. Silverman E. High Prices for Cancer Drugs are set at Launch: “It’s Where the Action Is”. Wall Street Journal Pharmalot. January 21, 2015. Accessed online February 16, 2015. http://blogs.wsj.com/pharmalot/2015/01/21/high-prices-for-cancer-drugs-are-set-at-launch-its-where-the-action-is/ 5. Household Income in the United States. Wikipedia. Accessed online February 26, 2015: http://en.wikipedia.org/wiki/Household_income_in_the_United_States 6. Gould E. Increased Health Care Cost Sharing Works as Intended. It Burdens Patients Who Need Care the Most. Accessed online January 15, 2015: http://www.epi.org/publication/bp358-increased-health-care-cost-sharing-works/ 7. Kantarjian H. 119 Collaborator Experts in CML. The price of drugs for chronic myeloid (CML) is a reflection of the unsustainable prices of cancer drugs: from the perspective of a large group of CML experts. Blood. 2013; 12(22): 4439-4442. 8. Kantarjian H. Relevance of the Hippocratic Oath in the 21st Century. The ASCO Post. October 2014; 5(16). Image courtesy of amenic181 at FreeDigitalPhotos.net. This image is for illustration purposes only, and a simulation of cancer medications and their high cost.

Please consider signing on with this important petition! 

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Quick update

I know I promised a longer post with an explanation of what’s been going on. Well... since getting home from in-patient, it’s been a struggle. Fixed one thing and something else popped up. I feel like after a trip to hell and back which supposedly resulted in remission, my body finally failed. So is that truly remission? Next week, a full set of new scans including a nuclear bone scan. Not a fun day. More one of these days when I can muster the energy to write.

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Time for a big post...

But in the meantime, from nearly a week long crisis intervention at the cancer center...

HOME! and a long post in the works to explain it all. Not a cancer flare-up!!

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Pain

Obviously, it’s something everyone experiences, the body’s response to injuries, illness, and inflammation. I’d had my fair share of it before getting diagnosed but cancer has redefined it. You could say I’ve become something of a connoisseur of pain and all its flavors and variations…

The thing about many types of cancer (including mine) is that it can be growing, spreading, and doing damage long before the pain sets in. It’s like the malignant cells can somehow work around the nerves and do their work silently. And then there is a day where you wake up and realize something is very wrong… For me, it was a stage 4 diagnosis that was the beginning of a journey into experiencing pain that I could never have imagined.

The latest version has been a reaction to my recent Lupron injection. The infusion nurse either grazed or scored a hit on the sciatic nerve which set off a round of the most excruciating nerve inflammation I’ve ever experienced. It takes a couple hours of loosening it up each morning to be able to stay on my feet for more than a few at a time. It’s like having a live wire coming out the base of my spine that wraps around my butt cheek, into my crotch, and down the leg… Both my Chiropractor and Oncology NP just keep saying it will take "tincture of time” to dissipate. But in the mean time, I've spent most of the last few days laying on my side (because I can’t sit) or stretching, trying not to make it worse.

This is pain that comes not from the disease itself but circumstances created by a combination of treatments. Lupron injections have always resulted in three or four days of localized soreness but occasionally they hit a nerve. The problem is, that whole area was in the path of IMRT radiation beam making it predisposed to inflammation. Add to that an irritated lower back from weeks of coughing due to illness from a compromised immune system, another gift from radiation. Net result? Burning, searing, pain that has just about pushed me over the edge.

Early on, I experienced bone pain from the mets (metastasis) that set a new bar for worst ever. When they asked me to rate it on the 1-10 scale, I said 11… It was so relentless that I ended up having to use Oxy every 3-4 hours around the clock. That pain broke me down, I just wanted to give up and die. For the record, I hate narcotics and resisted their use until there was no other option. I was buzzed into a foggy state for days at a time and barely remember it all. I also swore I’d never use it like that again… Tip for the newly diagnosed—don’t draw lines in the sand… I have many examples of things (treatments) I said I’d never do and in the end, when the shit inevitably hits the stage 4 fan, did them to survive.

But so far, I haven’t pulled that bottle of pills out of the drawer that looks like a mini pharmacy… Why would I do that to myself? Relief is just one small white pill away. I am taking anti-inflammatories but they have their limits. I can only use a low dose since my liver and kidneys are being pushed hard by Zytiga and the long list of other daily meds.

Guess it’s that streak of stubbornness I’ve always had. Cancer seems to have taken it to a whole new level… And maybe a deeper understanding of what pain is and how to live with it. No matter how bad it gets right now, I know it will eventually resolve. Of course in the last few days, I’ve had to keep repeating that to myself over and over. And when I’ve hit the wall and started losing it, Patti pulls me back from the edge. She gently reminds me of all the other times when I said "I can’t do this anymore" and then pushed on through it.

I may be in remission but have paid a high price in all aspects of my life to get there. And pain is always going to be a part of that price.

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Supreme Court Declares Same-Sex Marriage Legal In All 50 States

"The nature of injustice is that we may not always see it in our own times," Justice Anthony Kennedy wrote after recounting the legal struggles faced by same-sex partners.

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Finally, a moment of sanity from the Supreme Court. Our world and society is divided along so many lines but in the end, we are all human beings and deserve the same rights and protections.  

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Nutrition: Is Your Nutrition Impacting Survivorship?

The Western diet, which is high in red meats, processed meats, sugary desserts and drinks, high-fat foods and refined grains, has long been associated with obesity and cardiovascular disease but a new study published in Cancer Prevention Research now also links these foods to an adverse prostate cancer survivorship. The best diet to lower risk of death after a prostate cancer diagnosis is a diet rich in fruits and vegetables.

So before you supersize that drive-thru meal, consider this: researchers at Harvard T.H. Chan School of Public Health found that men who were previously diagnosed with prostate cancer, and who consumed the most amount of foods that make up the Western diet, had a 153 percent higher risk of prostate cancer-specific death. In addition, they faced a 67 percent increase risk of death from all causes.

Conversely, men whose diets consisted of fruits, vegetables, fish and whole grains had a 36 percent lower risk for death from all causes and a slightly lower risk for prostate cancer-specific death. Sorry, French fries aren’t considered healthy vegetables.

“Our findings with Western diet and prostate cancer-specific mortality were surprising, in part because there are very little data regarding how diet after diagnosis may impact disease prognosis,” said Jorge E. Chavarro, MD, ScD, assistant professor of nutrition and epidemiology at Harvard Chan School. “Our results suggest that the same dietary recommendations that are made to the general population primarily for the prevention of cardiovascular disease may also decrease the risk of dying from prostate cancer among men initially diagnosed with nonmetastatic disease.”

One way of interpreting this study would be to conclude that the Western dietary pattern associated with a higher cancer risk may be due to its nutritional composition. However, Christine Zoumas, MS, RD, director of UC San Diego Moores Cancer Center Healthy Eating Program, points out that there are several other factors at play that may impact cancer risk.

“Men eating a Western diet may not be as physically active or are more obese, which also increases the risk of cancer,” said Zoumas. “The risk may be associated with the absence of plant-based foods that provide the nutrients and bioactive components to reduce the risk of cancer.”

We already know that a dietary pattern rich in vegetables and fruits (at least 2.5 cups a day), whole grains and lean protein, and limits added sugars and fats and alcohol, is associated with a decreased risk of many types of cancers and helps the body recover after an illness.

Christine Zoumas says at least two-thirds of your plate should be made up vegetables (including beans) and fruits and whole grains. These are complex foods, each containing numerous potentially beneficial vitamins, minerals, fiber, carotenoids and other bioactive substances that may help prevent cancer and potentially inhibit cancer progression.

“The majority of nutrition research has focused on individual nutrients, bioactive components or specific foods,” said Zoumas. “This study looks at eating patterns, which may be informative, because people eat food, not nutrients.”

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Well... the Cape was pretty much a bust this year. After delaying our departure by several days, I thought I had recovered enough from the last respiratory thing. But as soon as we got out there, I got worse... Being sick away from home, even in a place as beautiful as the Cape sucks. I managed one walk on the beach and that was it. As soon as Patti was done with her presentation at the encaustic conference in P-Town, we headed for home. We were there for all of three days... 

But there was one bright spot, I was able to spend an afternoon with Melissa (talknboutluvdancnboutarktecture) and her wonderful wife Jenn! They were in P-Town for a weekend get-away. We had a chance to catch up and eat some yummy lobster rolls. Hopefully we’ll all get together again sometime this summer when I’m not coughing my lungs out... It was so good to see them!!

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Survivorship: Spouses Impact Cancer Survivors’ Moods

It shouldn’t surprise anyone to know that a person’s mood is often influenced by people who surround them, especially spouses who share the burden of everyday life. For patients with cancer, a spouse is often someone to lean on for emotional and physical support, who attends medical appointments and helps keep things moving forward even when a patient cannot.

In honor of Cancer Survivors Week let’s talk about a National Cancer Institute (NCI) study, published in Cancer Epidemiology, Biomarkers & Prevention, in which researchers found that cancer survivors were four times more likely to suffer from depression 11 months later when a spouse reported feeling depressed compared to couples without any cancer-related health problems. Survivors whose spouses described a better health-related quality of life had a 30 percent decrease in depressed mood 11 months later.

“We were surprised that the effects of the spouses on the survivors were so much larger in this study than the effect of the survivors on their spouses,” said Kristin Litzelman, PhD, a National Cancer Institute cancer prevention fellow in the Behavioral Research Program. “We expected to see a more reciprocal relationship.”

According to the American Cancer Society, there are 13 million cancer survivors in the United States. The impact of cancer survival is felt not just by the patient, in some way the disease affects the lives of others because as social creatures, humans do not experience stress in a vacuum, said Scott Irwin, MD, PhD, director of Patient and Family Support Services at UC San Diego Moores Cancer Center.

“This reciprocal relationship of distress among spouses has long been hinted at, and these findings further point for the need of healthcare, in general, to see patients and their family’s as the unit of care, as has long been done in hospice and palliative models of care,” said Irwin. “Based on these data, simple interventions for patient and spouse may work to alleviate depression and improve well being, whereas complex interventions for just one may not.”

Further work is needed to better understand the complex interaction of biopsychosocial factors in patients and families, which interventions might be best suited to alleviate depression and which interventions might bolster resilience and well being.

The bottom line, spouses or caregivers need to take care of themselves as much as they take care of their loved ones who are or have experienced cancer. Look for healthy ways to reduce stress or seek help. At Moores Cancer Center the Patient and Family Support Services program offers a free, weekly caregiver education and support group and periodically offer special workshops for couples or arts program to express yourself in a safe environment.

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A bee update from Meredith-

They are busy building cells and either putting honey in them or “brood” from the Queen’s eggs. Very cool stuff! Last time I was at her house, they were zooming in and out of the hive and looking pretty acclimated to the neighborhood. Even with a netting hat on, not sure I’m brave enough (yet) to pull a frame and get this close... Gonna have to get over that if I want to start my own hive next year.

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Compromise - Sunrise Rounds

Therefore, the final burden for each decision, for setting goals, for balancing personal benefit and cost, comes back to the patient.

An interesting read, thanks to Wendi (anotheronewiththecancer) for passing it along. I think about those compromises pretty often these days. 

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Down for the count

Not again...

This is getting old. Friday, we were supposed to leave for our annual trip to Cape Cod. Thursday I was feeling a bit off but hoped it was just allergies and or the usual lethargy at the end of a Lupron cycle. We decided to wait a day and hope for the best. But yesterday I started feeling worse and by last night it was another full-blown respiratory infection…

This is the third trip in a row (in as many months) I’ve had to bag because of illness. In the three years leading up to radiation (which included chemo, immune therapy, and multiple drugs) I wasn’t sick this many times!

Apparently, the hit I took from high dose IMRT did more damage to my immune system than all the other treatments combined. Some of the numbers in my various labs have been kind of scary but they (my team) keeps trying to reassure me that it’s “normal” to see that after treatment. Of course I have done way too much “research” on what those numbers could mean have freaked myself worrying about chemo/radiation induced MDS and Leukemia… Sigh…

Regardless of my situation, Patti has to be in Provincetown later next week for a conference. If by some miracle I feel better by then, maybe it won’t be a total wash. And what really sucks is that my dear friends Melissa and Jenn will be in P-Town that weekend and we were going to hang out.

This is one of those moments where I start to question whether the treatment is worse than the disease… Fucking cancer.