This page is the first page of my Journal as I read Laugh, Sing, Eat Like a Pig by Dave deBronkart aka ePatient Dave. I hope you’ll be able to join in the discussion on the comments pages. Some comments are located under The Empowered Patient main page.
Aug 9 – Dave’s diagnosis was grim. I won’t give it away. This ch tells why the book has its name.
Dave says, “I challenge you to be fully alive, every moment that you have left in life. As you read this book, please listen for how you can face every moment with power and grace, no matter what your circumstance. Take responsibility for your own life.”
On page 7 of the Methotrexate section, my conclusion: “When all is said and done, in my estimation, it is best to fight. And if the Rheumatoid Arthritis brings its strongest weapons, we should bring ours.”
The Sound of Music comes to mind. The Mother Superior says, “You have to look for your life” just before she sings, “Climb every mountain.” Maybe RA is a mountain I can climb somehow?
Chapter 2 (part 1 – this is a long chapter)
- Dave gets a cancer diagnosis. Prognosis: median survival time is 5 ½ months.
- Dave gets involved in online patient community, learning and becoming “empowered to get my buns in gear.”
- Dave gets hope and A LOT of good information.
Here begins Dave’s online journal. Medical, personal, and informational. I feel like I’m right there.
Some excerpts from the “e-Patients White Paper” – click here to read the 7 Preliminary Conclusions that Dave quotes on page 13 (scroll down that pdf to page 22). You’ll want to read this. I know I did last year, but it’s a blur. Not because it was unclear. I was just going through so much with my RA and the blog. Information overload. Glad to re-read.
Aug11 – I’m on page 18. I had to stop to remark. Dave had pain in his knee and arm. He wrote, “I would be very happy to go back to the painfree state where all I had was cancer!”
I assume there was sarcasm & foreshadowing in Dave’s comment. It still highlights that a life full of pain is not a bowl of cherries.
There have been lots of discussions here on this blog & through our FB group on Rheumatoid Arthritis versus cancer. Many have been from RA patients who have experienced both. RA’ers hate being frequently told “at least it’s not cancer” for lots of reasons. Here are 3:
- RA is extremely painful. Most RA patients live with pain medicine for the rest of their lives.
- RA is a serious disease that can cut the length of life by increasing mortality & the breadth of life by disability. (Does not necessarily cut the depth of life, but that’s for another day.)
- There is no use one-upping or one-downing with diseases.
Chapter 2 (second part)
Reacting as a person living with RA again:
- Nodding “Yes” to Dave with each new symptom, saying, “What’s THIS now???” That’s what RA patients tell me all day long.
- It was better for him when he found out one new symptom was caused by treatment and would be temporary. With RA, each new symptom can be like a sentence – another domino that has fallen.
- “It makes SUCH a difference to know what’s going on.” Yes!! One purpose of RA Warrior is to inform patients. I shake my head at all the things no one tells us about Rheumatoid Arthritis that are so critical to our well being.
Dave quotes ch 5 from the e-Patients White Paper (page 68) about the Lethal Lag Time. “The real problem arises because of the time it takes for a completed study to make it into the field.” It takes years for new practices to become widely adopted.
For all relevant new information to become part of her practice, a doctor would have to be online 24/7. We can’t assume our doctors have read all the latest studies. A couple of years of reading a few of the headlined studies per week have convinced me that this point is fundamental and indispensable with treating Rheumatoid Arthritis. New data can mean a big difference. Some of the things rheumatologists think they “know” turn out to be wrong.
It’s okay to bring new information to the doc. That shouldn’t threaten them. I don’t know why so many docs I’ve met seem to hate that. But we I need to man warrior-up and do it when needed.
Chapter 2, the last part
Aug 16 —
Dave finally has a good cry. And he shows us his humor.
Dave’s journal brings us up to the moment of the kidney surgery. I feel a little nervous in my stomach reading this. I think it’s more about his descriptions of plans for an HDIL (Interleukin treatments) or an experimental vaccine trial. Maybe it’s closer to home. I felt pretty uneasy 2 weeks ago starting Actemra, approved in January as the first IL-6 blocker to treat RA. I remember wondering what could happen to me. (So far nothing!)
I don’t know why having a kidney removed seemed more routine than his entering a clinical trial would? Still the surgery is staring down death in the face. My own brother has only 1 kidney left. Before RA, I had always promised him my “extra” one. I teared up here.
Aug 17 —
Facing death – with Hope
Radical acceptance has a good sound to a psych major like me. Personally, I’ve survived many trials by this: Accept what is. Work on changing all you can. Trust God with the results.
(I do acknowledge that there are times denial is a psychologically useful tool. Fighting for your life is not necessarily one of them.)
Dave writes, “And that’s the space I found myself in: “All right, this is what’s so. Let’s get to work.” This reminds me of something I wrote: We need to stop being shocked & surprised. If we can come to terms with the diagnosis & the prognosis, facing the worst case scenario, maybe we can stop feeling “SHOCKED!” over and over that this is all happening to us.
The science of hope is interesting stuff. I think humans were made to hope like we were made to breathe.
When a patient asks, “Will I get better?” one doctor learned to tell patients, “We will try. Will you work with me? …One thing: if we succeed, you must drive carefully. We don’t want to save you and have it wasted!”
Dave reminds us, “You can choose to try everything. Or try until you’ve had enough.”
Aug 19 —
Dave is in surgery so the next section of the book has entries in Dave’s online journal from his wife or sister. I’m being careful not to spoil any details of the story.
Dave chose his surgeon based on his skills for a “fancy” method of kidney removal: Laparoscopic surgery. Getting a kidney removed is not just “getting a kidney removed” – there’s more than one way to skin a cat & apparently a kidney too. I learned a lot about this idea of choosing the right surgeon for your case when I read the story Dave linked to in the comments here. It’s long, but worthwhile: “Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey.” It’s a story about a mother’s fight for her daughter’s life.
Just yesterday, I was on the phone with a close friend discussing her possible hysterectomy. She told me that she would be seeing a new doctor because he specializes in doing the operation via the naval with the shortest possible recovery time. I was so impressed that she had researched that & suddenly remembered my mother telling me a similar story several years back. It was about choosing just the right surgeon for an ovary that was cancerous. I don’t know how challenging it is to get the information needed to make these important choices, but obviously some people are making them. So, it must be possible.
Aug 22 —
Dave is back. Only 1 day after surgery, he types an entry. His progress is chronicled in his journal. I don’t know if I mentioned he accomplished this via an online community called Caring Bridge. Some post-surgery stuff like pain meds, the cane, that long road to the bathroom are stuff we RA patients deal with sometimes too.
Dave explains the phenomena of “Silos” in healthcare. I’ve dealt with this – but I never knew it had a name! Basically, your insurance is billed by your diagnosis, not your treatments. There may be no one who knows what all of your treatments are except you.
Think how this could affect an RA patient:
- You cannot expect your cardiologist to know you have added a new DMARD.
- Your rheumatologist may not realize you have thyroid disease.
- Maybe your pain specialist needs to know you have switched Biologics.
- Does your GP know which antibiotics are safest with methotrexate?
- Does the mammogram technician realize you cannot put your shoulder in that position?
- The medical aide at the rheum doc always wonders why I would have a fever.
- The infusion nurse should know whether I’ve been sick lately.
- Fill-in-the-blank-here! I-could-go-on-all-day.
This is one of the biggest problems with RA. This is something the primary care physician can assist you with somewhat. However, most GP’s are not very educated about RA. So you will need to become your case manager / care coordinator. Isn’t it great how smart & responsible RA makes us?
Aug 25 —
Reading Dave’s journal entries, I can feel his frustration at the lack of an end in sight. Also some fear about the HDIL-2 treatment. Also annoyance at pain. And a fierce determination to continue to hope.
He’s honest about how all this affects his moods. I’ll bet this really helps cancer patients the way RA patients read my blog & say, “Now I don’t feel crazy.” We might have read about the good ol’ “stages of grief” theory, but there’s nothing better than knowing someone who’s been there to make it all feel normal.
Aug 29- –
Page 53. “I must say, it does make a notable difference whenever someone from my life reaches out and asks how I’m doing. Thank you, very much, no kidding, really.”
Such a simple thing, but so true. There are blogs out there about how you can help a person who is sick. I’ve even written one. But all it usually takes is saying, “Hi, how are you?” Well – that, and listening for the answer.
The saddest thing I’ve learned over this past year is that for many patients, this doesn’t happen very often. Often, the only ones who ask these questions are other RA patients. Thank God I know other RA patients now! And thank God for my wonderful kids who ask and listen. I do pray that God will help us to increase awareness so that there will someday be more compassion about this disease. I hope we can all find someone who will listen and ask how we feel.
Read more: A post about sympathy.
Sept. 8 – –
Great news!! Dave says in a comment the Kindle is out – here is the link to the Kindle version of Laugh, Sing, Eat like a pig!
Ending chapter 4. Dave is soon starting a treatment called “HDIL-2” (high dosage Interleukin 2). It’s early April. The tell-tale shoulder x-ray had been January. No wonder he feels “ready” to get started with the treatment “now!” I won’t spoil the “surprise” Dave got at the end of ch. 4…
This chapter is called “Participating in My Care Online.” I hope you have started to figure out by now why I wanted you to read this “cancer” book. It’s because it’s not a cancer book. Being a patient is a lifelong thing for every person. For RA patients, it just takes on greater significance since the disease causes so many different health-related issues and a need for constant care. So the success or failure of our experience is magnified in some ways.
Dave explains how his hospital actually has a secure website where he can access his medical records including test results online and email doctors:
“I’m not a medical professional, so there’s a limit to how much value I get from an online lab result. Both my wife and my sister in Maryland know much more about such things. So I gave them my PatientSite login, and now either of them can read my lab reports, pathology reports (from a biopsy), scan results, etc., and see if there’s anything that catches their eye for further discussion. Imagine trying to do that if the lab report is in a folder in someone’s office!”
Hopefully, it won’t be too many years before this concept becomes more widely accepted and available. “There’s been a paradigm shift: Dr Welby has left the building. What used to be a one-way street is now a two-way street.” ~Elizabeth Cohen, Senior Medical Correspondent for CNN.
Sept 11 – – pages 65-72
Dave goes through his first round of Interleukin treatment during these pages. IV’s every few hours in a hospital setting. If you ever felt like a guinea pig with your IV chemo / Biologic treatment, you’ll feel right at home here. So hour by hour & day by day, they go hope for the best on the side effect front. Will the side effects happen? Will they be as bad as people say?
On the care giving front, I was impressed that it seemed like whatever he needed to provide relief and comfort in response to the side effects. I’m guessing it is because they know what to expect from the drug. (And forgive me interrupt to wish for something more like that for RA patients. They are always talking to one another about “What can I do to help the ______?”)
Another theme at this point is the support Dave received from friends, many of whom he’d met online through the CaringBridge. It’s funny how some people don’t seem to think people you meet online are real folks. In my experience they are. And I’ve loved meeting them over the phone and in person. The cards Dave got were real and provided real support in his fight against the cancer & the side effects of treatment.
Sept 13 – –
I finished chapter six in the car today. The book is hard to put down. Reading Dave’s journaling is like re-living it with him. It makes me wonder, like I’ve said before, “Who reads our blogs?” We don’t always know. I’ve said that they are great sources of information for anyone who wants to really understand a condition. I do think it somehow could help researchers to look at somewhere other than the Petri dish. I’m not being facetious. It might really help to know what to look for with diseases that are still a mystery.
Prominent themes: Support for Dave. He loves his work. His will to live.
This week, I looked at the title of the book again. It says “beat stage IV cancer.” I thought about Dave being alive right now. It’s a nice book, but it’s a real thing. A real fight that a real man won. Just struck differently me this week.
Sept 23 – –
This chapter is called The Web Is Changing Healthcare. It’s a short chapter about what we do here on Rheumatoid Arthritis Warrior every day. The technical word is “Web 2.0.” It’s content that’s fresh and created by users – me as a blogger and you as a commenter who can add your own opinions and links to the conversation.
“We modestly suggest that the tentative conclusions below are no more ‘anti-doctor’ or ‘anti-medicine’ than the conclusions of Copernicus and Galileo were antiastronomer.– e-Patients White Paper, ‘Seven Preliminary Conclusions,’ Chapter 2.”
Once in a while, I’ve written about what I’ve been learning through social media about how things are changing in healthcare. Social media or Web 2.0 seems to go hand in hand with health care information because information is changing so rapidly. New treatments and new studies and Web 2.0 means patients responding and adding information and interacting with the information and one another. It seems like that even further accelerates the increase in knowledge.
As I’ve begun to understand the terms “e-Patient” and “participatory medicine,” I’ve shared with my readers. Sometimes a reader has commented that such discussions are “anti-doctor” or “anti-medical establishment.” While I understand their fear, it shows they do not understanding what’s happening. Many good people are taking part in the movement toward participatory medicine, including many doctors and healthcare professionals.
Here is how Dave explains it: “You could put it this way: Web 2.0 means we get to say. We get to say whatever we want, and we even get to say what gets talked about. This is a core principle cited in the e-patients white paper, which you really should read.”
One fear some have is related to the “safety” of information obtained on the internet. I have met several patients and doctors who refuse to use the internet. Mostly, they are afraid that patients will read inaccurate information or misinterpret what they read. But, anyone who can read a newspaper can read the online. Dave on “safety” of the information acquired by researching online:
I put “safety” in quotes because it’s a big mistake to think that well-vetted certified MD-approved info is the best path to safety: every bit of misleading or useless info I got last year came from well-vetted web sites. The only indication of quality that I found was whether other “consumers” of the information (patients and their families) said the info was reliable.
The big difference now is that a girl like me with a laptop and a passion can talk with patients like you all over the world about what we’ve read. We can all share what we’ve found and what worked for us. We can endorse what we find to be reliable.
I hope you’ll notice the hope that Dave gets from good information about what he calls “Technical” details regarding his treatment. His wife found specific data available online about which patients respond best to the treatment (IL-2) that Dave was receiving. I know it’s old, but “Knowledge is power” – and sometimes, hope.
Pictures! This chapter has pictures of Dave’s rental scooter. You don’t always think of cancer=disability the way you do with RA. But cancer that’s affecting bone tissue would certainly affect walking.
The scooter was part of Dave’s getting back into some of his normal life – like going into the office.
The cancer wasn’t gone – the bone metastases were evident to him. Do you know what it’s like to see something destructive growing in your own body? Horrible.
A less serious example of course is the appearance of rheumatoid nodules which can pop up suddenly and sometimes painfully. They are considered evidence of more serious disease. The activity of the disease usually progresses unseen in our hearts, so we see a nodule and wonder what is next.
– – Oct. 2
Dave writes about his relationship to his disease (cancer) and the difference his perspective made. It was not as a victim. It was not with denial.
I had to laugh when he mentioned that attitude can boost the immune system. We with auto-immune arthritis diseases are trying to suppress our immune function to survive. So many good things increase immune function: from laughter to orange juice. We wonder if anything we do is right, anymore. I’m laughing out loud anyway at Dave’s process of naming his cancer. It’s not an alien force so he asks whose cancer is it, anyway?”
I smiled remembering times I’ve been chastised for casually using the phrase, “my RA” since the disease is so heterogeneous. Yours is not like mine. Heck mine is not like mine over time – it’s a moving target. But back to Dave: “Mind you, who am I to know how to fight a cancer?? Do I know anything about the biology of cancer? No. But now my outlook is that I have a cancer in my life, and I’m doing what I can to manage it …. and I’m creating new ways to interact with it…”
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