Want to make 2022 the best year of your sex life? We’ve got the webinar for you in “Cancer, Chronic Illness, and Intimacy”.
From pleasure with a partner, or just riding solo, nothing is off limits in this webinar featuring sexual medicine rockstar , Dr. Rachel Rubin.
Featuring a panel of patients Dion (lupus), Jimmy (prostate cancer), Kim (multiple sclerosis), and Michael (testicular cancer), and questions from the audience, you’re sure to find answers to your own questions.
The AnCan team thanks Dr. John Antonucci for submitting his opinions on hospice and palliative care in end-of-life considerations. Dr. John is a retired clinical, academic and research psychiatrist. His most recent gig before hanging up the white coat was at the VA providing care in the addiction clinics. He is also a peer in our High Risk/Recurrent/Advanced Prostate Cancer Group.
Our discussion group (High Risk/Advance Prostate Cancer) hasn’t talked much about end-of-life care or making decisions about things like resuscitation status, stopping treatment or hospice care. But the topic has come up lately, and since we have Dr. BJ Miller, co-author of a relevant book and a palliative care physician, on the AnCan Advisory Board, it is appropriate to take a first or second look at his chapter.
The authors start by defining these often-confused terms: Hospice provides end-of-life care with the goal of comfort rather than trying to cure a disease. It is actually a sub-section of palliative care. Palliative care is treatments added-on to regular medical care, at any stage of serious illness, and is intended to improve the quality of our physical, spiritual and emotional lives.
The authors explain what qualifies a patient for Hospice care. Anyone who has a terminal illness and is ready to stop treatment aimed at curing it, and who is expected to live 6 months or less, may qualify. A multidisciplinary team is then assigned and the treatments are brought to us, in our own homes if desired. (There are also residential hospices but these are not as common as often assumed.) Health insurance policies, including Medicare, cover Hospice. There are useful tips in the book on finding and choosing Hospice providers, and a section for when the hospice is not performing well. The authors encourage us to not to wait until our last few weeks to get this process going.
Palliative care is now its own medical specialty. Again, the idea is to make our lives nicer by helping to reduce a wide variety of suffering, including pain, anxiety, drug side effects, depression, fear, nausea, and spiritual pain. Most of this type of care is delivered in the hospital or outpatient clinic. Palliative care is integrated into our existing treatment plan, rather than being comprehensive like Hospice. Health insurance will generally cover these services although it might leave us with co-pays and deductibles. And again, the authors urge us to start early; there is no requirement that we be close to the end, only that we have a serious illness.
The overall effect on me of reading this chapter was not only education but also reassurance. Not only reassurance that we deserve comfort and don’t have to hide our suffering, but also that Someone will be there to care about our suffering and try to help. Quite comforting, I believe.
We love Jennifer Digmann! She makes up one half of our lead MS moderators with her husband Dan. Here she shares what it was like being diagnosed with MS as a young adult, and talks about MS Rockstar Dr. Aaron Boster, who you may have seen around here at AnCan.
It was my senior year in college, and crazy things were happening with me. No, I don’t mean bar crawls or sorority parties, I’m remembering numbness in my hands and feet and incredible fatigue. While I probably was burning myself out studying, working and socializing, I never saw being diagnosed with multiple sclerosis in my future. But six months after graduation, I was diagnosed with that chronic, progressive disease of the central nervous system.
Hmm, MS? At 23 years old, I had other plans for my future, but the disease didn’t care. Its progression was relentless. There were three available disease modifying medications at the time—DMTs intended to slow the progression and severity of the disease—and I had no success with any of them. Time and my walking ability was going by so quickly. What was I going to do?
Fortunately at that time, I started hearing about a newly approved medication to treat more progressive forms of multiple sclerosis. Unfortunately, my neurologist at the time did not feel comfortable prescribing me this drug. Again, what was I going to do?
I was scared and frustrated, yet I knew something drastic had to happen to slow the progression of my disease. Even if that meant finding a new doctor who felt comfortable and was willing to prescribe this newly approved medication to me.
With my first neurologist’s blessing and referral, I began my more aggressive treatment at the University of Michigan neurology clinic. I was fortunate to find a team of fantastic doctors to treat my case. They prescribed a vibrant, electric blue infusion solution called Novantrone. While my MS did not drastically improve, it stabilized, and stability has been incredibly important to me. I am so thankful and credit those doctors with altering the course of my disease.
Full transparency, I am particularly fond and appreciative to the engaging young resident who was on my care team close to fifteen years ago. In those years after my Novantrone treatments, so much has happened in my life. My multiple sclerosis has stayed pretty stable, I was able to earn my graduate degree, and most importantly, I married the man of my dreams.
And not surprisingly, so much has happened in the life of that engaging young resident, too. Since his time at the U of M, Dr. Aaron Boster has become, well, Dr. Aaron Boster. He is a champion and a powerhouse for the multiple sclerosis community.
While Dr. Boster is no longer treating me, Dan and I still find value in the accessible, informative content he shares with the MS community. Dan and I were thrilled that he recently had a very thoughtful conversation with us which provided answers to our “7 Questions with a Couple” blog series.
AnCan is deeply saddened to hear about the loss of Rodney Reese, a tireless advocate for Sarcoidosis and moderator for AnCan’s Sarcoidosis group. We send our love to the family, friends, and entire community during this difficult time. In honor of Rodney, fellow moderator Frank wanted to share a little bit more about this incredible man. Thank you, Rodney! May his memory be a blessing to all.
I am going to preface this by saying this is one of the hardest things I ever wrote before. On Saturday we lost a great advocate but more importantly we lost an even greater man. Rodney Reese was so many things to so many people that knew him. He was a husband, father, son, brother and most important to him he was a grandfather. He always talked about his family.
For those in the Sarcoidosis Community that didn’t know him he should have touched you for the things he stood for and his actions for the Sarcoidosis Community. He was always thinking about how he could help someone or how he could make it better for those who couldn’t help themselves. Rodney always had this great presence when he walked into a room. You always knew you were with a very educated calm force. He always showed that grace, charisma, and had a charm that you were always drawn to.
Now Rodney to me was so much more. He was one of my best friends. He was my brother. We have been talking online for about ten years. We finally met physically at our first FSR Ambassador training with the original 15. We met and right away we hit it off. That is being mild about it. We were brothers right away. We talked during dinner, then some of us went to the hotel upstairs bar, we talked some more. Okay when I say some more we talked until the bartender said last call and our wives called us. We looked at our watches and saw it was after 4am. We had no idea of time. Nobody would have thought we just met for the first time. It was just that easy! But that is Rodney Reese! The next day we paid for it because we had a full day of training on maybe 2 hours of sleep. Did we care? No. We were there to meet others as well as learn.
Rodney was someone who would give me a calm feeling, as you all know I can be a bit “in your face, hothead at times.” He always knew what to say to get a smile out of me when I was going off about something. He also knew when it was time to let go as well and join me on my tirade. We worked hard and loved hard when it came to our advocating. I knew if I came up with an idea no matter how crazy or how quick I wanted to get it done. He would always say to me “I am in. You can count on me. Just tell me what you need me to do.” Every time I needed him; he was there. Even if he wasn’t feeling well, he would let me know he could do only a little bit, you could tell he felt bad about it. It didn’t matter to me if he did a lot or nothing at all, what mattered to me was that he approved. He was my mentor, that was unsaid, but I hope he knew he was. He always said, “How did I have the energy to do what I did?” He was very quick to give me a compliment. Like I said he knew how to make you feel better.
The second year there was another Ambassador who joined us, Paul Dickerson, an amazing man as well. Paul, Rodney, and I hit it off so well. People started to call us the Three Amigos. We hung out together at the training and even went out afterwards. The three of us would keep in touch. At that time, I wasn’t doing that well health wise and having those two positive people always made me smile. All three of us would call each other to see how we were doing. It wasn’t just a wellness check either, we would talk to each other for over an hour at least. But we never hung up the phone without saying “Love you brother.” Paul started that, but all three of us meant it.
In 2018, I was going through many health issues even being told I was terminal. It was those two brothers that helped me so much mentally to fight for my life.
Then in May 2018, Paul passed away. That was so hard for the two of us. Rodney and I talked that night for well over an hour. One thing we kept was “I love you brother.” You see Paul’s death hit both of us real hard. It was like losing a family member. I remember us talking about how we had to work harder to help others. We bonded even more after Paul passed, if that is possible.
We went through so much together as advocates. In August 2019, I remember calling him with another “great idea” I had. I remember saying to him” How about we start an online support group, for those patients, caregivers, and family members who couldn’t go to a face-to-face meeting or didn’t have one near them.” Once again Rodney says, “Sounds great when do we start?” Little did we know what was coming. We started the support group in November 2019. It kicked off and was amazing, still is going.
Then the pandemic hit…. In March 2020 we got hit with the pandemic. I got COVID in mid-March. Rodney and others stepped up. It was a tough time for me, but Rodney was calling checking up on me.
Then when I was getting better, something else happened…. George Floyd, Breonna Taylor, Ahmaud Arbery and others, and the protests. Well, that hit Rodney real hard, and he decided to stay away from the support group, as did others. I remember calling him and I never heard him so mad before in any of our earlier conversations. I just remember my heart went out with him. I felt so bad, and I thought there was nothing I could do to help ease his pain. I knew and felt his pain. I then made my usual quick idea, yet again. “Hey Rodney, why don’t we do a forum about Civil Justice or In-Justice? He was all for it. He jumped in as much as I did. He introduced me back with Bernie Mac Foundation, he also was able to bring on extra people on the panel. He did so much for that first forum and two after even being part of the panels and stepping in to moderate one of the forums for Mental Health and Social Justice. Not once did he want any credit for any of these forums. He put all the emphasis on me and what I did, but not once did he talk about how much he did to make sure these went off well.
You may ask why I made this dedication so long? Well, you all needed to see the Rodney I and many others like me knew.
He was an amazing man. He was a caring, loving man. He was a Brother to me!
The last time I spoke to him was the second day he went into the ICU. I am not even sure Harriet knew this. He said he had to beg and bribe the nurse to call me. He was on full oxygen, but he was still asking me how I was doing. He told me he was going to fight hard and tried to reassure me he was fighting as hard as he could. He wanted to make sure I was doing fine.
You see, that is what Rodney is and was. Always there, always caring, always Rodney! I am sad that Rodney is no longer with us. Well, that is an understatement. I am devastated. But I can hear Rodney telling me, “Come on, you know better, what is next?”
Rodney you may be gone, but you will always be with me. I know when I have the next idea you will be saying, “what do you need?” You will always be here. You will always be in my heart trying to calm me down again.
Rodney, “I Love You Brother!” I will keep the legacy of the Three Amigos going and forever trying to improve this community!
On September 30th, we had the absolute pleasure of spending the evening with Nancy Novack, founder of Nancy’s List. Nancy’s List is a comprehensive listing of integrative, financial and complementary listings to ease the burden for patients and caregivers navigating the cancer path.
In the 15 years Nancy Novack has been compiling numerous linked resources on Nancy’s List, no one has ever asked Nancy about her own personal favorites, until AnCan did! We had a wonderful evening of sharing resources (many of them free!), stories, and wait until you hear what Nancy thinks the oncology community needs more of.
