On August 31st, we had an incredible webinar tilted Mental Health and Multiple Sclerosis. Featuring Dr. Lauren Strober (Senior research scientist in the Center for Neuropsychology & Neuroscience Research at Kessler Foundation and assistant professor of Physical Medicine & Rehabilitation at Rutgers University New Jersey Medical School), Carly Podzikowski, and Kim Stroeh for tips and tricks on how to “feel” through the emotions that come and go with the crazy ride that is Multiple Sclerosis.
You might even feel like you’re always getting a “new normal”. Sometimes it can feel like a wild roller coaster ride if you’re not prepared. Let us offer a little guidance on how to go with the flow and how to change course when you need to. We’ll be talking about emotions and grief throughout different stages of an MS diagnosis – whether you were just diagnosed last week or last decade (and beyond!).
Learning how to deal with all aspects of this illness is a challenge, but we’ll walk you through some adaptive strategies.
If you’re in need of a little pick-me-up, or perhaps some much needed time making art as “therapy” with other people in our amazing AnCan community, we’ve got something for you.
AnCan’s Summer of Art
AnCan Foundation has been awarded a grant from HealtheVoices Impact Fund at the Community Foundation of New Jersey funded by Janssen Pharmaceuticals, Inc. to provide art “therapy” to brighten all our lives! We’re calling this art “therapy” series the Summer of Art!!
Award-wining arts-in-healthcare teacher, Hannah Garrison, who lives with MS herself, will AMAZE and ASTOUND you with your own abilities!! No art experience needed – just curiosity and a little creativity.
And it’s accessible to all – even those with ‘hand issues’. AnCan wants this to be disability-centric so we are sending you art supplies Our grant funds 4 classes through 2022 – first one on June, 16!
To attend fill out this form by June 9th to receive FREE art supplies, first-come, first-served …. markers, paper, and adaptive writing aides. Class size is limited!
First class – June 16th from 8-9:30pm EST / 5-6:30pm PST
A link will be provided for the class by email!
YOU’LL be drawing Van Gogh inspired sunflowers …. wondering how??
Hannah will break it down into small, manageable petal sizes that you can scribble through bit by bit until voila – SUNFLOWERS AND A VASE!!
And it’s interactive with lotsa space for queries and questions.
Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.
EVERYONE please complete the form – if we run out of supplies, you’ll have priority for the next class! Your application is how we keep track.
Complete the form by June 9th to receive free supplies and the URL to attend!
AnCan’s Art Director and MS Moderator, Hannah Garrison, Honored!
The Multiple Sclerosis Association of America has recently recognized one of AnCan’s favorite moderators, Hannah Garrison as their Annual 2022 Benefit Honoree!
AnCan LOVES Hannah ….. she is a longtime moderator of our MS Groups AND leads the AnCan Art Program that teaches everyone that no matter your abilities, art is not out of reach. Check our AnCan Art Gallery to see the work Hannah has helped our participants create. Btw, that program will be back in 2022 with 4 sessions before year end – and we’ll be providing FREE art supplies!
Every year, MSAA names one corporate honoree, and one from the MS community. This year
Hannah was recognized as the MS Community Member of the Year,. She has been working with the
MSAA to lead and develop their “Improving Lives Through Art” Paint-Along series throughout 2021 – a program that we beta-tested here at AnCan.
This is amongst MSAA’s newest set of virtual fundraising events in which participants paint a predetermined subject together in a virtual “classroom”, instructed by Hannah. Hannah sets the subject, MSAA sends the supplies off to participants’ homes, and everyone who joins in has a chance to create a special piece of artwork with family or friends together with everyone in the virtual room. The program is a huge success, and continues to support the MSAA’s mission to fund programs specifically for the MS community.
Hannah is adamant that the visual arts were a stepping stone in her recovery from the grueling effects of multiple sclerosis. One day she decided she’d had enough, and began working through her mental struggles, cognitive struggles, and physical struggles via the process of making art. Now Hannah Garrison uses art as a safe space to explore her struggles and to sit with them – never to judge or belittle any result that takes place … or for that matter anything that arises along the way!
Hannah has AMAZED some of our AnCan particpants who have told us they never thought they had this creative talent within them.
You can read about Hannah here, and learn more about the MSAA Benefit which took place on May 5 th in-person and May 12th virtually, here.
Watch out for our four (4) 2022 Art with Hannah sessions, coming soon. You can reach Hannah Garrison at hannah@ancan.org if you want to be sure to receive an invite to AnCan’s classes – they are open to all.
Some may have read the excellent ediorial written by Moderator Ben Nathanson in a recent High Risk/Recurrent/Advanced Prostate Cancer Reminder. Ben explains ‘time toxicity’ … a concept that effects many living with serious disease. If you missed his musings, here they are again:
Treatment that gives us time to live demands time in return. It drags with it scans, blood work, drives to the hospital, doctors running late, computers down, battles with insurance. Part of our gained lifetime is lost in dead time. Toxicity is always in the cancer mix. Financial toxicity has become part of the conversation alongside physiological toxicity, and time toxicity — time lost in an effort to gain time — is joining it. In a thoughtful 2018 essay, physician Karen Daily notes “Much of our patients’ time investments remain invisible to clinicians.” This year, in ASCO’s lead journal, three physicians have taken up the challenge, proposing that clinical trials, when reporting overall survival, distinguish between “Days with Physical Health Care System Contact” and days the patients actually own — “Home Days.” This a new idea only in cancer, say the authors — cardiology and other fields already make these kinds of measurements. When medicine’s best offer is a handful of months, we face difficult choices. Time toxicity casts a shadow over both survival time and quality of life. As we try to balance days added against side effects, it would be good to know how much of the time we’re gaining will be ours to spend.
Reading Ben’s thoughts prompted one of our regular participants to write a reply to us both that touched me to the core. I asked if we could reprint that too, and was graciously given permission on condition of anonymity. Here it is!
Ben, thanks for the article on “time toxicity” in the (recent) meeting announcement. It identifies an important consideration for all to think about in the fight vs. cancer and from my personal experience an impact that changes over time. Your write-up got me to thinking and pushed me to a holistic realization that this is basically an investment decision with expected returns.
For the prostate component of my cancer fight (now 17 years and counting), I did not think about the time investment in the first 14 years that I (and family members) were making to “do battle” (eg lab work, appointments with doctors, scans, treatments, family meetings, insurance challenges and personal downtime / reduced effectiveness in work due to treatment, etc.), It was a “no-brainer” decision and I never considered the tradeoff as the benefits for the opportunity to “continue to live life” due to treatments as my “life” returns were overwhelmingly positive vs.the “investment” required to do battle.
Having retired three years ago and simultaneously entering a new phase of my cancer fight I am aware of the increased time I (and family members) now spend on cancer treatment yet obtaining reduced time for life (and quality of life). I’m now spending significantly more time at Doctors appointments, treatments and longer periods of time post treatment feeling the physical effects of treatment and have begun to recognize I’m going to hit a point where this equation gets out of balance….and I’m not equipped with a decision model to manage that occurrence. Given my personal nature is to grind on stuff (I can make it work, give me time and let me try!) — I’m likely to blow right past the point of equilibrium where time toxicity and balance of life toxicity begin to get out of hand. For much of the first 14 years of my cancer fight I practiced a very large (and for me, healthy) dose of self-denial that I was dealing with prostate cancer. I was able to keep the cancer part of my life cordoned off, did not have significant residual time spent thinking / worrying / etc. about the disease and lived life to the max both personally and professionally. Now, in the last three years I am finding growing quantities of “thinking time” consumed by the disease and also sucking family members…. wife and children….deeper into the cancer battle as discussions / time encroach on them as well increasing the cost of investment (time) in the battle vs. cancer.
Prostate cancer is my second cancer fight, Ten years prior to the prostate cancer diagnosis I was diagnosed with a rare leukemia (rare as it was diagnosed in a limited number of folks (~2,000 / per year in the United States) and was usually fatal shortly after diagnosis as there were no lasting treatments until about 4 years prior to my diagnosis. As a freak outcome of scientific research a drug treatment was developed; the drug was intended for another cancer that had a much larger annual incidence of new cases; the drug was not effective on the targeted cancer but it was very effective on the rare leukemia. And at the time the treatment protocol was 7 days of continuous drip via a small pump one wore around the waist as an outpatient; minimal side effects; and if the first treatment didn’t work a second round was almost guaranteed to work. Talk about lucky! There was no way research funds would have been spent on this cure except by accident — which was exactly the case. The time toxicity for me in my first cancer battle was non-existent and I believe has indirectly helped me in the prostate cancer fight by giving me a dose of optimism and coping skills.
I think the topics raised by both of you….including Rick’s statement on treatment longevity results are important for the group to consider. These are relevant points of management in the cancer battle that I haven’t seen addressed by my oncologists (except one) nor psychologists and psychiatrists that I’ve also used in my treatment.
Editor’s Comment: In the original Reminder, I responded to Ben’s comments by adding one of my own. I pointed out that frequently Overall Survival benefits were shorter than might be expected because trials are often run on patients at a very late stage of their disease. This caveat should be considerd when we see the FDA reporting short life extension, sometimes as few as 2 or 3 months, for newly approved drugs.(rd)
What do oncologists have against palliative care ….?
If you regularly attend AnCan’s virtual chat support groups, you are sure to know that whatever the condition, we frequently recommend palliative care … almost anytime and place we can.
And NO – palliative care is not about dying – it’s about preserving Quality of Life. Some of the smarter institutions have figured that changing the name to an acronym like Symptom Management Service at UCSF or Supportive Care at Memorial Sloan Kettering may account for greater acceptance and higher quality. It may also explain why these two institutions are among the best in the biz. Others like City of Hope, that still keep Palliative in their name, struggle to make palliative care easily available to their patients.
A recent article in Hospice News reports that “Cancer Patients Often Not Referred to Palliative, Mental Health Care”. Amongst 240 surveyed oncologists, only 17% referred their patients to palliative care early in the disease process. Yet many studies show that the earlier a patient is referred to palliative care, the better the outcome – especially for cancer. On more than one occasion at the same NCCN hospital, AnCan has had to navigate a participant to self refer to palliative care in order to receive treatment. In one instance, this even involved the Chief Medical Oncologist.
Given the underpinning principle in medical ethics of ‘Do No Harm’, essentially embodied in the Hippocratic Oath, how can this be?
At AnCan, we have a theory, we see this as a control issue. For some oncologists, and maybe other specialties who might collaborate with palliative care too, they are uncomfortable sharing patient management with other docs in essential areas like palliating comorbidities. While palliative care physicians are required to stay up on developments in pain treatment, antiemetic (nausea) drugs, and other forms of supportive care, oncologists have their heads buried in cancer care.
AnCan is very fortunate to have Dr. BJ Miller, one of the foremost palliative care gurus in the US, on our Advisory Board. If you doubt that, BJ’s TED Talk is now up to 14.6 million views! Dr.Miller now practices his profession from his own organization, Mettle Health; his services have comforted several AnCan participants. So we thought we would ask Dr. BJ Miller for his view on an issue he has lived with for many years …..
” I think medical training is part of the problem, as is confusing messaging around what is palliative care. and i agree that a piece of the problem is related to control, and, related, misunderstandings about how palliative care works (ie, as an additional layer of support that makes the treating physician’s life easier as well as his patients’; not a service that will steal your patient away or somehow undermine your authority).
and then there’s the culture of medicine, where death is the enemy and suffering is just part of the cost of doing business; and where medical issues are taught as separate from the psychosocial and spiritual issues a patient faces.
lastly, medicine generally does not include the caregiver/family in the equation, where much of the suffering happens.” …….. Tx BJ!
Sharing patient management may not come naturally to many physicians, especially if not part of their institutional culture. At AnCan we say, let the doctor most specialized in each aspect of care take responsibility for it on behalf of the patient. When inappropriate doctors stand in the way, the patient suffers.
Of course, AnCan is a patient driven organization ….. we welcome a response from other docs to explain what we are missing!
Nothing makes me, as AnCan’s Founder, happier than when our participants meet each other. Over 30% of our respondents said they made friends outside the groups, earlier this year.
New friends got made across international borders and they didn’t even have a condition in common!! . Mark Horn (on right) lives with metastatic bladder cancer for which AnCan does not as yet have a group. I have been supporting him personally and we keep in touch. Mark usually resides in Princeton, NJ but was on a trip to Panama to visit with his fiancee, Kalina, who lives in Brazil.
We had just seen Wang Gao Shan (on left) in our high risk/recurent/advanced prostate cancer group on Monday night, and I guessed he was in Panama too – since he could not be inTaiwan because of the time differnce and I did not think he was in Portland, OR. Gao Shan resides in one of those three sposts.
So I suggested that Mark and Kalina email Gao Shan as I didn’t have his phone number. Sure enough, there was an immediate response and last nifght, as you all see, they met for dinner in Panama City. Now I had never seen Gao Shan so I was as surprised as Mark. The story behind Wang Gao Shan’s Chinese name is for him to tell – I can just tell you that it means King of High Mountains … and that I am truly happy they got together!
And to boot, it turns out that both lived on a long street in London that runs through my teenage stomping grounds but they weren’t neighbors – that would have been too much!
Hello, Friends and Family of AnCan.
Award-wining
Some may have read the excellent ediorial written by 
Nothing makes me, as AnCan’s Founder, happier than when our participants meet each other. Over 30% of our respondents said they made friends outside the groups, earlier this year.