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While I was hiking yesterday I had a thought for a study I’d like to do – or at least research whether anyone else has already done it. Of course, I cannot even think about it until I’m finished with my dissertation research, but I thought I’d write it here so that I don’t forget, but also to see what others thought about it. If anyone has any suggestions on where / how one might get some funding to study this I’d love your suggestions. A grant of some type would give the study some legitimacy, however, at this time I’m not affiliated with anyplace that could do that.

Anyways, more to the point, the study idea. The title would be something like: Comparing online peer-to-peer support with oncology care team support relating to chemotherapy side effects in metastatic breast cancer patients.

Part of what got me thinking about this has been conversations with my friend Lori Wallace. She has metastatic breast cancer (MBC) and is very involved in the patient online communities. When she learns something that might be helpful, she makes a note of it.

When Lori begins a new chemotherapy regime, she looks up her notes and asks others about the side effects. She recently started Xeloda, which has a common side effect of “hand and foot syndrome”, where the skin on the hands and feet get paper thing and dry – the folks at Chemocare describe it as similar to having a sunburn on your hands and feet. One of the suggestions she had learned from her support group was to take 400mg of vitamin E. This is something her oncologist, who is truly amazing, had never heard of. Lori describes it as “It makes a subtle difference, but it HELPS and that’s a big deal. It’s the difference between walking with with painful feet and walking with bloody, raw painful feet. Feet hurt either way, but with Vit E, it’s at least possible to baby the feet a few days, then do normal things and “beat them up” without all ones skin peeling of and bloody fissures.”

Another thing that Lori learned from her support group was that Ritalin could help with the debilitating fatigue she was experiencing. It turns out that her oncologist had heard of it, but that it is not approved for that purpose. As a result, her oncologist could not suggest it. In the end, Lori went to one of her other doctors (palliative care or family medicine) in order to get the prescription.

These are just two examples of the type of information that patients are gleaning from each other through online support groups. It isn’t necessarily that the health care team doesn’t know – more that they are not empowered to share – but also that they don’t always have the time or motivation to seek out ways to reduce some of the sometimes rare side effects of a given chemotherapy regime. Patients on the other hand are motivated to find that information. When you are suffering, you reach out to those who understand and appreciate your pain, and can offer some ideas on how to make your life better.

I want to highlight that this is very different than snake oil type “cures”. This is not people who have no experience with the illness lecturing on what might work – rather it is people that do know exactly what it is like to live with the illness or side effect, and can share the things that make a “subtle” difference that really is the difference between having a good day and having a bad one – and when your days are few, every good one matters.

I also want to highlight that the information received isn’t always useful and in some cases does cause harm. This is part of the balancing act patients of critical and chronic illness need to learn how to navigate.

For a research study, I was thinking of looking at what knowledges MBC patients share in their online support groups, and how that compares to the knowledge they gain from their healthcare teams. I’d also like to contrast that with the information that oncology teams receive from formal healthcare training (e.g. continuing medical education courses and conferences). I want to articulate the role that online support groups play that is beyond providing social support. We know that social support is provided by these groups, but there is also medical information provided. There is also patient empowerment support. There are real suggestions that make a huge difference in quality of life for patients. I’d like to look at this and formalize what is happening within these communities and associate it with the role of ePatients in the future of medical care.

Now, my question for my readers, does this sound like a needed/good study idea? Does anyone have any idea of organizations that might be willing to fund such a study? 

 

 

 

Am I a bad person? I cannot help it. When I hear of someone famous dying of cancer and they are in their 70s, it just doesn’t feel like a tragedy to me. I cannot help but think that they had a good long life.

I guess that at the same time as seeing news of a famous person dying because of cancer, a famous person that is almost 70 … and when only moments before I learned of a mother in her 40s with young children dying … that is so much more the tragedy.

That is what I think about when I see these news articles about the famous 69 year old … he had a good long life … the mother, she should have had a good long life. Her death is the real tragedy. And yet, only those who knew her, or those who were impacted by her social media presence, are grieving for the loss. The news media knows nothing of the young mother who died from metastatic breast cancer – taken well before her time. Her kids too young to remember her. That is the real tragedy. Thinking of her and her children, that is what makes me sad.

I’ve seen it all before. Some famous person dies … they are in their 70s or 80s … and I can’t help but think that I would be happy to live that long. To be healthy as I age. That is a good life. It is the life I want for all my friends.

I am reminded of the interview I did for the local news paper for the October Breast Cancer spread. When the reporter (who did an excellent job BTW) asked me, what do I hope for in ten years. My response was – I hope that all my friends are still alive. Now that in and of itself is a tragedy.

Over the last few weeks I’ve had the privilege of deepening connections. I’ve been lucky enough to have been healthy enough and had funds enough to travel to the UK to attend two conferences (ALT-C Ed Tech Conference and QUB ePatient Blogging conference). This was quickly followed up by the Medicine X Ed conference here at Stanford, and later today I’ll be heading over to the Health 2.0 conference in Santa Clara. It has been a whirlwind. Somewhere in the middle I even did a reading as part of a book launch.

I’ve been writing this post in my head over and over since my return from the UK. Meeting people face-to-face for the first time can be very emotional, invigorating, and stimulating. There can be magic. However, this isn’t always the case. Sometimes when you meet in person, things just don’t work out. It is like the messiness that is life. No one is perfect, and yet we have a tendency to want to project that perfection on our virtual friends. That being said, we sometimes are surprised at just how nice people are in person. This post is about a few of the genuinely nice people that I had the pleasure to connect with in real life (IRL) – note that I dislike this term, but it is what is commonly used and is easier to type.

My point behind this post is to share some of the great times I’ve had over the last few weeks. Let’s start by the opportunity to meet Maha Bali. She was my friend and confidant throughout my cancer treatment. She was the first online friend that I told. I made a request of her, asking for some scarves, as she would know what it meant to wear a head covering on a hot summer day. She obliged but did something even more meaningful. She sent me some scarves that she bought for me, but also shared with me scarves that were hers. She shared a tradition that is common among muslim women. I was so deeply honored.

This was the first selfie we too right after meeting in real life (IRL) for the first time:

Maha’s daughter understood it sooner than we did. For her, it was no big deal. I was just Rebecca. She was used to seeing me on the screen and hearing my voice. Being physically present didn’t change anything. Meanwhile Maha and I spent a lot of time poking each other, hugging, validating that we were in the same physical space. It was special.

While we were in Manchester, there were so many people who wanted to meet Maha. It was a challenge to get any alone time. In the end, I was able to sneak in about 10 minutes of alone time – unfortunately, it was because I just needed a hug after hearing of Jaq’s passing. Again, I was able to call on my dear friend and confident.

We were in Manchester to present at the ALT conference, with our other rhizo friends and colleagues. Sarah has posted our presentation on her blog here: Rhizocats. In the end, I didn’t see too much of the conference itself, other than the two keynotes and a couple of sessions. I chose to skip out on the sessions in favour of spending time with Maha and supporting our Virtually Connecting project.

It was sad to say goodbye to Maha and her daughter, but I’m so glad I had the chance to meet IRL.

And one last selfie for the road:

I then went on to the Queens University of Belfast ePatient Blogging and Microblogging conference. Here I got to meet a whole bunch of really amazing people. I’ve already blogged about how I found my tribe there, and how the conference helped give me language to better describe the type of research I want to do (one word – autopathography).

After the conference AnneMarie Cunningham, a friend I met at the Canadian Conference for Medical Education (CCME) in Ottawa two months before diagnosis (April 2014). When AnneMarie last came to San Francisco in October 2014, she reached out and said it would be nice to connect. Since chemo had made me unable to drive, my husband took a day off work and we toured around with AnneMarie and her husband. We enjoyed playing tour guides, but forgot to mention one thing … never turn your back on the ocean!

After the QUB conference, AnneMarie brought me with her while she called on a friend from her university days in Belfast. It was interesting to learn a little bit more about Northern Ireland through the lens of old friends. I learned that in Northern Ireland, flags carry political connotations. After a brief visit, we headed out of town, passing a flute band on the street, which is yet another politically charged icon (Google Belfast Flute Bands). As we were leaving town we past by an odd sculpture called Rise, on the west side of Belfast. The locals call the sculpture either ‘The balls of the falls’ or ‘westicle’, which made us laugh.

I had mentioned to AnneMarie that back in the early 80s I had a penpal from Ireland – Castleblayney in county Monagham. It was through my penpal that I learned about ‘the troubles’ in Northern Ireland. Since it was almost on the way to AnneMarie’s mothers place, we drove through Castleblayney. We couldn’t find a castle to take a picture of, so instead, we took a picture of the festivities that we had just missed (arriving about 5 hours too late) – the Irish Bog Snorkelling Championships:

After Castleblayney, we headed to Kilkeel and AnneMarie’s mother place, where we spent the night. The next day, AnneMarie’s mothers birthday, we went out to a nice lunch and I had a chance to meet a couple of AnneMarie’s siblings.

After lunch, we went on a bit of a tour of the area. I mentioned to AnneMarie that I had no yet been to a castle on this trip (I love castles). We drove over to take a peak at Greencastle Royal Castle:

We were surprised to learn that the castle was open to the public. Not at all dressed appropriately for tromping around castles, we did it anyways:

One of the people I was really looking forward to meeting at the QUB ePatient conference was Marie Ennis O’Connor. Unfortunately, she was not well enough to travel that week so we didn’t get to meet IRL. Fortunately, the following week both AnneMarie and Marie were coming to Stanford to present at Medicine X Ed. So I had a chance to connect with both of them again here:

This time it was my turn to play tour guide. I had some lovely moments with both AnneMarie and Marie. I as able to share my tree with each of them:

AnneMarie was here a little longer, so we took a quick drive up to Muir woods to see some of the giant coastal redwoods:

I love the little (and big) things I learn about people when I get to spend a little time with them. I value my online friendships, but I have to admit that my connections go deeper when I get a chance to be with people in real life. I am honored to be able to call Maha, AnneMarie, and Marie friends. It has been such a pleasure to be able to spend some time connecting.

One thing I have learned about my closest online friends – they are all connectors. They are all people who thrive off of feeding relationships, and connecting people to one another. It is something that I also enjoy doing. I love it when something that I do brings two people together – catalyzing a new connection. It is not uncommon for our conversations to go something like “do you know this person?” or “you should meet this person” or “let me connect you to this person”. I see it in all of us. It is how we weave our webs.

When doctors are taught to give bad news, they are told not to skirt around the issue. It is important to come right out and say it. The words matter.

What I don’t think they are told is that the good words matter too. Part of my struggle has been that the doctors don’t seem to come out and say the words – You are cancer free or your are NED (no evidence of disease). They say things like you are doing fine, come back and see me in 3-months or 6-months. But sometimes, we as patients, just need to hear the words. None of this implying them, but not actually saying them. We need our doctors to say the words, cause the words matter.

Hi everyone,

I’m conducting a study – I want to look at how breast cancer blogs are impacting people who read breast cancer blogs. I’ve put together a survey that takes about 5 minutes to complete. I am most interested in the final question. I am asking you to please take few minutes and complete this survey: http://fluidsurveys.com/s/blogimpact/

The survey will be open until the end of April.

Thank-you!

A time lapse photo collage of pictures taken at my tree (mostly – I snuck in a couple from Big Basin and Yosemite) – here is the link for those that don’t see the slide show below – http://dttocs.smugmug.com/photos/swfpopup.mg?AlbumID=46685634&AlbumKey=XbMQZx

It was never more clear than when I was in the hospital, that I needed my husband, and I needed him to be just as engaged in my care as I was (or perhaps even more so). There were several times when things where not quite right, but I was not in any shape to explain what was wrong – I was too drugged up to provide a true picture of how I was feeling or what my concerns were. That was when my husband stepped in and explained things. He listened intently when the doctors were giving instructions, and often had found himself clarifying things to the nurses (note that I had some pretty awesome nurses – but they were not there when the doctor explained how to do dress a wound – my husband was) – he was the one person who ensured that I had continuity in my care.

Coming home from the hospital posed its own challenges. We were unable to get an electric recliner, but had several wedge pillows. With the help of the physiotherapist I was able to get into and out of bed on my own (however, I wasn’t able to stack the necessary pillows under my knees and feet – to reduce ankle swelling I need to sleep with my feet elevated – so every time I get out of bed in the night I need help getting set back up so that I can sleep. I was also very lucky that our patio chair recliners happened to be just the right height and have just the right resistance, such that I had a comfortable place to sit when I wasn’t sleeping.

Being at home also meant that my husband has to play the role of nurse. I have several incisions that require dressing changes once or twice per day. Because we both like efficient processes, we have figured out efficient ways to manage these changes – the first being that my hubby strips and empties drains first thing in the morning, then removes all dressings so that I can shower. Then after my shower and I’m all dried off, pictures are taken, then all wounds are dressed for the day. The process takes over an hour, but seems to be the most efficient time for changing dressing as I’m already undressed and clean.

Then there are all the pills. I don’t have the mental capacity (especially with the pain meds) to figure out when to take which pills. I was sent home with 17 different prescriptions (plus I had a couple of extra thrown in for good measure). Managing this has been no small task (we reduced a few when we saw the doctors on Monday and hope a few more go away next week too).

So, I must emphasize that there is no way I could be an engaged patient without the help of my husband – who is a very engaged care giver. 

Today, I say thank-you to my loving husband for all his support through this ordeal, and I wish him a very happy birthday.

At day 3 (Saturday), things started to look a little better. I was moved over to the window. The room I was in was the tiniest of hospital rooms. The single room I had on my last stay was almost the same size as the double room I was in for days 3 and 4. The space was crazy small.

This was particularly a challenge for my neighbor, who had a large family. All the family wanted to be there all the time, but there just wasn’t space for it. For me, this got a little frustrating, as the family members wanted to watch TV – so the person they were visiting was asleep, and they were watching a ball game on TV … the only thing between me and the other person was a drape – which meant that no one saw me, and therefore made no consideration as to how they may be bothering me. The nurses did have to tell them to limit the number of people in the room. It was addedly difficult for them, as they were not from close by – a 3 to 4 hour drive away – so they didn’t have anywhere else to be other than there. I felt bad for them, but on the other hand, it didn’t exactly help me heal either.

I do think the TVs should be removed – personal TVs with headphones make more sense in shared spaces.

The thing that annoyed me even more than that was that for the two days we had different nurses. The other ladies’ nurse were turn on the overhead light at 6am and say a loud “good morning” … the lady wasn’t deaf, she just didn’t speak English (she spoke spanish) … anyways, I was annoyed that the nurse again paid no consideration of me. I had just gotten back to sleep after a 5am doppler check (I seem to be on an odd hour doppler cycle) … this is specific feedback that I will try to figure out how to provide to that specific nurse. Anytime my nurses went to wake me up, they put arm on my shoulder and gently woke me up … the overhead lights went on only when necessary to inspect dressings and such … but again, I think the curtain provides a false sense of privacy, but also a barrier that makes it too easy to ignore the patient on the other side of the barrier.

I have to say that over the 4 days I spend on the G2S ward, for the most part I had spectacular nurses. They advocated for me, and they worked hard to help me be as comfortable as possible. They also integrated Scott into my care – letting him help, showing him how to do things, and informing him about what was going on – and allowing him to advocate for me when  I was so drugged up that I could not advocate for myself.

On Sunday afternoon I was transferred to a new ward (C2)  as I no longer needed doppler checks every 2 hours). In C2 a private room was available. The space was truly delightful. When I first moved in, they were having an exceptionally busy afternoon/evening. I still needed help getting into and out of bed to use the toilet – with the reduced staff and them being crazy busy, this mean a waiting (first time I tried it was over 20 minutes).  Armed with that information, Scott decided to spend the night, as he could help with transfers when the nurses were not available. Unfortunately, at one point I had a bad transfer (the nursing assistant that shift wasn’t very good – the one that came on the morning I left was amazing). The bad transfer made me nervous about getting up – but also left me concerned about how we would manage when we got home.

Discharge was planned for Monday – so when the docs came by at rounds we specifically asked for a PT consult to help with the transfers. The PT was awesome. She showed me how to get into and out of bed on my own (much less painful than with assistance). That was really the last step I needed to be comfortable with going home … I could get into and out of bed on my own (just needed help once in bed with pillow positioning and blankets …

So, Monday afternoon I was glad to be home … again it took some time to figure out the logistics of getting into and out of bed … and Scott spent several hours figuring out how to manage my various medications.

After several days at home, we now have a routine. Meds on pretty much every odd hour except 1am and 5am (so that we have two four hour windows for sleep) … processes are much more efficient (e.g. dressing changes happen after a shower since the dressing have to come off for showering anyways). Healing is happening. I’m feeling a little stronger each day ….

I have four drains … and I’m looking forward to when I can get the first two removed. In theory the output is such that removal is an option … however, trying to get an appointment to make it happen is a challenge (ugh holidays).

This morning began with a shower. Being efficiency minded as we are wont to be, we used this as an opportunity to strip and empty drains and change all dressings (required once per day). I didn’t choose to use soap in this shower – since it was my first one – I simply hopped into the shower with trains in a belt draped around my neck, and sat on my shower chair, allowing the shower to rinse of six days of hospital sweat and general yuckiness off my skin.

It felt glorious to have some hot water run over me. Tomorrow I’ll introduce some soap into the mix – washing my hair and face.

Afterwards, it occurred to me that I needed to put somewhat presentable clothes on, since I want to be able to walk, and there isn’t really the space in my apartment to walk – so I need to get dressed to go walking along the inner court yards of my apartment. When I realized that what I had chosen to wear was actually colour coordinated, I had to get a picture 🙂

 

My energy returns and I’m stuck with the daunting task of prioritizing all the things on my to do list – all those things that I’ve been avoiding or just plain not doing because I could not concentrate, or did not have the energy. Now I’m finding myself so crazy overwhelmed with a to do list a mile long, that all I want to do is turn off my computer, pick up my laptop and watch TV … oh the vicious cycle.

And as my brain starts working again, the scope of this next surgery starts to dawn on me. Each time I get in the shower, I ask myself – am I making the right decision? What if I changed my mind and opted for breast conserving surgery (lumpectomy) … then I remember, first off, that there is still cancer in my breasts after the last surgery (that sneaky little L2 that is difficult to find on mammograms), my margins were not clear (meaning surgery to clean the margins), then if they did managed to get all the invasive stuff out, my breasts also have DCIS which is harder to find … and then I would need radiation on both sides … and when all that was done, I’d need to return every 6-months for a mammogram or MRI to ensure that the cancer hasn’t returned … I’m pretty sure that if I asked my doctors, they would all say that the bilateral mastectomy is the right decision to treat my cancer.

About 10 days after surgery I’ll get another pathology report – this time on all the breast tissue that is removed during the mastectomy. It will be this report that will help to elucidate the true extent of the cancer – or at least the post-chemotherapy extent.

What bugs me is that I know that some of the cancer reacted well to the chemo regime I was on, and some of it did not. That is so frustrating … Looking back at the pathology, they were all >95% ER+, but the progesterone positive amounts differed for each of the three tumors … here is the summary from the initial pathology:

L1:
ER+, >95%, 3+
PR+, variable 50-70%, 3+
KI-67: 38%
HER2: 2+ Indeterminate (FISH negative)
Nottingham Grade: 3

L2: (Note this was processed at a different lab than L1 and R1)
ER+, >95%, 3+
PR+, 90%, 3+
KI-67: 1-5%
HER2: Negative
Nottingham Grade: 1

R1:
ER+, >95%, 3+
PR+, 80%, 3+
HER2: 2+ Equivocal  (FISH negative)
KI-67: 8%
Nottingham Grade: 2

What strikes me when I look at this now is that the PR levels are different – in addition to the grade (or growth rate) levels. They don’t appear to re-run these tests with the surgical pathology, where I summarize the results here.

So my renewed sense of energy means that I’m getting stressed out all over again. I need to try to re-focus my energy on positive things – on moving forward. If the weather clears tomorrow, we shall focus on going for a nice walk – I want to check out the Sierra Open Space area after rain – the hills to the left of starting to look green instead of brown, so I want to see what they look like after rain. Then I need to start preparing for surgery Wednesday and my in-laws arriving Friday. Now I just need to find a little focus …