tag:blogger.com,1999:blog-68616712136192101202024-03-05T12:14:18.469-05:00Cancer Fun Time!A blog about my experience with tongue cancer (HPV+ oropharyngeal squamous cell carcinoma), and my work in the cancer research field.Unknownnoreply@blogger.comBlogger160125tag:blogger.com,1999:blog-6861671213619210120.post-39290579080636449112023-05-08T15:05:00.003-04:002023-05-08T15:05:26.990-04:00Ten Years AfterAnybody still here?<div><br />
May 6 was the 10 year anniversary of my cancer diagnosis. Time flies.</div><div><br />
Life is good. Progeny the Elder is finishing her freshman year of college and Progeny the Younger is a rising senior in high school. Both are thriving.</div><div><br />
Wonderful Wife has only grown more wonderful with the years. We express gratitude for each other and for the life we have every day.</div><div><br />
So so far, it's a happy ending!</div><div><br />
<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtXTftq8NHbZuJGM8mAt-oPH7_NtL0wo-ebk5uM1j0hyUwRvC-ot2KkO_7EGMgdDZAVXdWQb_oh-powoSVVdiUv_jZmg3h2S0KStRmj5t0IVkcmRJhNFkKNlRC4W3LHEy0TB4vf1ZE8yKvO4FoC6a8Yy52hZuf1TpC5EuPLIkV0DsYyU10PEOC_Pw5/s1200/IMG_6420.png" style="clear: left; display: block; float: left; padding: 1em 0px; text-align: center;"><img alt="" border="0" data-original-height="900" data-original-width="1200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtXTftq8NHbZuJGM8mAt-oPH7_NtL0wo-ebk5uM1j0hyUwRvC-ot2KkO_7EGMgdDZAVXdWQb_oh-powoSVVdiUv_jZmg3h2S0KStRmj5t0IVkcmRJhNFkKNlRC4W3LHEy0TB4vf1ZE8yKvO4FoC6a8Yy52hZuf1TpC5EuPLIkV0DsYyU10PEOC_Pw5/s320/IMG_6420.png" width="320" /></a></div></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6861671213619210120.post-28222245053962809762019-07-22T18:37:00.002-04:002019-07-22T18:37:25.411-04:00Yup, Still There<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXcPeplE4M6VD_HE002eZDiAEW1fwaLPH6Xr7HAtmz_YRAkAzMvdyhOieg2CJAwJIuJbx0_Ahlh4nvSNfTJdHVRpXbVL7aDnP9doARjGwtyXfJe5MCn0K0WogvMcyljNr5IqiMSOkWkok/s1600/2019-07-22+fear.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXcPeplE4M6VD_HE002eZDiAEW1fwaLPH6Xr7HAtmz_YRAkAzMvdyhOieg2CJAwJIuJbx0_Ahlh4nvSNfTJdHVRpXbVL7aDnP9doARjGwtyXfJe5MCn0K0WogvMcyljNr5IqiMSOkWkok/s320/2019-07-22+fear.png" width="314" height="320" data-original-width="400" data-original-height="408" /></a>
<p>
What's still there, lurking in the dark recesses of my mind?
</p>
<p>
Fear.
</p>
<p>
Two weeks ago I started to have a slight twinge in a front tooth. It got slowly worse over the next couple of days, to the point I called my dentist's office. They asked if I'm a grinder (sometimes) and whether I was wearing my night guard.
</p>
<p>
I wasn't. So I gave that a try. Seemed to help the first night.
</p>
<p>
But then over the weekend I developed a lot of tongue pain. It seemed to change a lot in character, but it definitely involved muscle pain that made it painful to eat. You don't realize how much you move your tongue while eating until it hurts to do so!
</p>
<p>
I probed a lot with my finger. Finally I probed waaaaay at the base of my tongue, between it and my jaw.
</p>
<p>
Ouch!
</p>
<p>
Yup, that's it.
</p>
<p>
Hmmm. Base of the tongue, you say?
</p>
<p>
Longtime readers may recall that the very first sentence I ever heard involving cancer contained the words "base of the tongue."
</p>
<p>
So, ya, I spent the weekend thinking I was having a recurrence of cancer.
</p>
<p>
And this is after years of telling people I'm cured.
</p>
<p>
I stewed.
</p>
<p>
I shared this theory with Wonderful Wife, who of course took it in stride. I planned in my head how I would contact the Head and Neck Cancer Center at Dana-Farber on Monday and try to get an appointment ASAP.
</p>
<p>
Monday I forgot. Hmmm.
</p>
<p>
Meanwhile, I had also developed a cold sore on my inner lip and two blemishes on my chin which are very unusual for me. Probing more, followed by a visual examination by Wonderful Wife, confirmed that at least part of the tongue pain was coming from a large sore on the side of my tongue.
</p>
<p>
Monday night I bolted awake with a different diagnosis: shingles. All on one side of the body, all in the same region, "tingliness" to the pain? Check, check and check.
</p>
<p>
I visited my doctor's office on Tuesday morning and it took the nurse practitioner about 60 seconds to confirm the diagnosis.
</p>
<p>
Whew. Not cancer.
</p>
<p>
This is what cancer survivorship is like. You move along in your life and everything seems normal, but that fear is just under the surface ready to pop out with the slightest opportunity.
</p>
<p>
You may remember that at one point in my journey I was elated to find out I had a sexually-transmitted disease (HPV). This time I was equally happy to have shingles.
</p>
<p>
I'm writing this on Monday two weeks after symptoms first appeared. It was quite painful all last week but managed pretty well with interspersed Tylenol and ibuprofen. Saturday it started to improve and today I am almost pain-free and the sores are healing. I'm glad that my course was brief.
</p>
<p>
I harp on readers incessantly about the HPV vaccine (and I'm about to do it some more). There's a vaccine for shingles, too. It's called Shingrix. The problem is that it is in short supply and hard to find. Every couple of months over the past two years I have thought about it and called a pharmacy or two to see if they have it available. I struck out every time. If you are over 50, I encourage you to obtain it.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-63222915179568502222019-06-17T19:23:00.000-04:002019-06-17T19:23:23.919-04:00HPV Vaccination is Paying Off - Scotland Edition<p>
Several countries made HPV vaccination mandatory as long as a decade ago. That means the 12-13-year old young women who received it first (before it was approved for boys of the same age) are now in their early 20s are are receiving PAP smears. Scotland was one of those countries. The results are as very positive.
</p>
<p>
BBC News April 4, 2019:
</p>
<h2>
<a target="blank" href="https://www.bbc.com/news/uk-scotland-47803975">HPV vaccine linked to 'dramatic' drop in cervical disease</a>
</h2>
<blockquote>
The routine vaccination of girls with the HPV vaccine in Scotland has led to a "dramatic" drop in cervical disease in later life, new research suggests.
</blockquote>
<blockquote>
Human papilomavirus (HPV) is a sexually transmitted infection and some types are linked to cervical cancer.
</blockquote>
<blockquote>
Researchers said the vaccine has nearly wiped out cases of cervical pre-cancer in young women since an immunisation programme was introduced 10 years ago.
</blockquote>
<blockquote>
They found the vaccine had led to a 90% cut in pre-cancerous cells.
</blockquote>
<blockquote>
And they said the effects of the programme had "exceeded expectations".
</blockquote>
<blockquote>
The uptake of the vaccine in Scotland is about 90%.
</blockquote>
<blockquote>
A team of academics - from Strathclyde, Edinburgh, Aberdeen and Glasgow Caledonian universities - analysed vaccination and screening records for 140,000 women who went for their first cervical screen from 2008-2016.
</blockquote>
<blockquote>
Their study, published by the BMJ, concluded that Scotland's HPV vaccination programme has led to "a dramatic reduction in preinvasive cervical disease".
</blockquote>
<blockquote>
It adds that the vaccine is "highly effective" and should greatly reduce the incidence of cervical cancer in the future.
</blockquote>
<blockquote>
...
</blockquote>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-69387957566657138402019-06-16T18:18:00.002-04:002019-06-16T18:18:55.691-04:00Six Years<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYHi-o9JJv-grfmfTqWxygr3Xco9ACDksb6VDkNsUItpvB7qzaYv776ONq2noYW1Hh2hVBsFiOaJCAX15OtpJE7sS0hVew8ndso9qql5Ye45Q6MPxDF0UKOqDCddIJqgTCZVFtk6TWvvY/s1600/2019-06-16+six.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYHi-o9JJv-grfmfTqWxygr3Xco9ACDksb6VDkNsUItpvB7qzaYv776ONq2noYW1Hh2hVBsFiOaJCAX15OtpJE7sS0hVew8ndso9qql5Ye45Q6MPxDF0UKOqDCddIJqgTCZVFtk6TWvvY/s320/2019-06-16+six.png" width="320" height="320" data-original-width="330" data-original-height="330" /></a>
<p>
Wow, I can't believe I haven't posted since the <a href="https://www.cancerfuntime.com/2018/06/five-years.html">five year mark a year ago</a>!
</p>
<p>
Life goes on. Everything I said last year is even more true today.
</p>
<p>
The family is all well.
</p>
<p>
I am well.
</p>
<p>
Carry on!
</p>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-50085419215850955382018-06-24T20:16:00.001-04:002018-06-25T08:45:26.433-04:00Five Years<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuiQ6S43fMkrr_MXbcB1YGJbOndVx9I_LUTbQdYjzmPW1ZEXdvwyvxldaAi0WDlrHGnXwL0uQF6m5smKRn9_3WJXG-6YH3FFsjft3qvp_UKPLKI8PefvKADHHa-VMKBW3wnaNkfKdEjfU/s1600/2018-06-24+five+years.png" imageanchor="1"><img border="0" data-original-height="400" data-original-width="400" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuiQ6S43fMkrr_MXbcB1YGJbOndVx9I_LUTbQdYjzmPW1ZEXdvwyvxldaAi0WDlrHGnXwL0uQF6m5smKRn9_3WJXG-6YH3FFsjft3qvp_UKPLKI8PefvKADHHa-VMKBW3wnaNkfKdEjfU/s200/2018-06-24+five+years.png" width="200" /></a>
<br />
<br />
So, I just passed a little milestone: five years since cancer diagnosis.<br />
<br />
I’m an official cancer survival statistic!<br />
<br />
There’s nothing magic about five years with my particular cancer. But in order to measure progress overall, the CDC and other organizations track and publish five-year survival rates for all cancer types. You can see them <a href="https://gis.cdc.gov/Cancer/USCS/DataViz.html" target="_blank">here</a> (on the Survival tab).<br />
<br />
It feels both long ago, and like yesterday.<br />
<br />
Wonderful Wife and I find that we use it as a life milestone. We’ll be trying to remember when some other event occurred, like having the house painted, and we’ll ask each other, “Was that before or after cancer?”<br />
<br />
Long-time readers of this blog may recall that once I learned my cancer was highly survivable, I wanted to treat it like the flu with an unpleasant treatment. I didn’t feel like it would become a significant life event for me.<br />
<br />
I was wrong.<br />
<br />
I’ve written about scares I’ve had since treatment, where some other symptom or remark by a clinician unleashes an unexpected level of fear. It surprises me that it is right there under the surface.<br />
<br />
I’ve always tried to be an empathetic and kind person but I think surviving cancer has helped me become even more so.<br />
<br />
Two years ago I went to work in Informatics at Dana-Farber. That continues to be quite an honor. It gives me weekly opportunities to be helpful and kind to patients who are in the thick of it. And my personal experience gives me valuable insight in my work. I am working on projects that should have a direct impact on cancer research and new and improved treatments.<br />
<br />
The Progeny both suffer from anxiety. They did to some extent before cancer (it’s disheartening how many adolescents suffer from anxiety today), but cancer definitely stepped it up, especially for Progeny the Younger who is now 12. Both have gone to therapy.<br />
<br />
Wonderful Wife has a long history of depression, which fortunately is pretty well managed with medication. But after the heroic effort she put in taking care of me during treatment and recovery, she experienced a deep trough for several months. Luckily, with the help of her doctors, she was able to climb out and has done pretty well since.<br />
<br />
The side effects of treatment persist but are just part of life now. I still cough a lot because of diminished and thick saliva that makes my throat "sticky". I think my sense of taste has improved, but it's such a subjective thing that it's not clear whether that is physical change or modified perception. My hearing is still affected, but I only have significant trouble in noisy environments like restaurants and bars where trying to focus on a conversation can be exhausting. Those are constant reminders of cancer, but they have a neutral sense to them - they are what they are.<br />
<br />
The fact that I write so seldom here these days is evidence of the recession of cancer and its effects into the background of my life. Life is normal and busy, and even though I have a long list of topics I’d like to write about here writing never seems to rise to the top of the list.<br />
<br />
I’m not even sure anyone is still listening here. If you are, please send a note to john at methot.net. Just say “I’m still here, keep writing!”<br />
<br />
Next week I visit Dr. Chemo for my follow-up visit. Those are now just twice per year.<br />
<br />
I’m going to bake brownies and make cards with a family photo, and deliver them to the Head and Neck Clinic, the Infusion Center, and Radiation Oncology. These are the places where I spent most of my time during treatment. The staff sees most people at their worst, and I know they like it when former patients come back healthy and happy and normal.<br />
<br />
Happy Five Years to me!Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6861671213619210120.post-20674977658935831232018-04-13T22:55:00.001-04:002018-04-13T22:55:21.598-04:00A Strong ThreadWow, it's been ten months since I've posted here. Way too long. Please leave a comment to let me know if anyone is still here!<br />
<br />
I actually have a stack of topics I've collected to write about but I never seem to make it a priority in my time or energy budget. But here I am. And I'll try to get to those topics soon.<br />
<br />
This week my friend and neighbor, a health economics researcher and blogger and Twitter god, wrote about a health issue he is experiencing. Then he wrote about the experience of writing publicly about a personal health issue, including the positive feedback he received, the rapid widening of his knowledge of the topic via input from his circle, and the response from a few people asking if he worried about future ramifications. He also wrote that he found the experience cathartic.<br />
<br />
I sent him praise for his openness, and I asked if he was familiar with <a href="https://en.wikipedia.org/wiki/Bren%C3%A9_Brown" target="_blank">Brené Brown</a>. It turns out he is quite familiar with her and strives to learn her lessons.<br />
<br />
Well, that brought to mind my friend and former coworker Yair (who has consented to being identified here). In the middle of cancer treatment Yair praised me for my honesty and vulnerability on this blog and told me about Brené Brown, whom I had never heard of. I watched her famous TED talk videos (<a href="https://youtu.be/psN1DORYYV0https://youtu.be/iCvmsMzlF7o" target="_blank">2010</a> and <a href="https://youtu.be/psN1DORYYV0" target="_blank">2012</a>). She speaks my language. Through years of therapy and 12-step groups and other work, the most important accomplishment of my life was finally arriving at the sense of worthiness that she describes, accurately, from my experience, as the core of happiness.<br />
<br />
Having that brought to mind by my friend/neighbor's recent writing caused me to go watch those videos again. Powerful stuff. I highly recommend you invest the 40 minutes to watch them. I want my teenage daughters to watch them.<br />
<br />
That, in turn, caused me to go back and reread many posts from this blog. I do that from time to time to remind myself where I've been. I started with <a href="http://www.cancerfuntime.com/2013/11/why-am-i-here.html">Why Am I Here?</a>, the post that prompted Yair's comment, but then moved backward in time into the worst parts of treatment. Yair was mainly praising my willingness to show weakness and fear, like in <a href="http://www.cancerfuntime.com/2013/07/a-crying-shame.html">A Crying Shame</a> and <a href="http://www.cancerfuntime.com/2013/07/ultraviolence.html">Ultraviolence</a>. That last post, especially its last two sentences, caused me to cry tonight!<br />
<br />
The core of Dr. Brown's message is the title of that 2010 TED Talk: "The Value of Vulnerability". Vulnerability is what enables connection, and connection is what we all crave. She says, "it's what we're wired for."<br />
<br />
With this post I thank Yair for connecting years ago, and for the thread that runs through a growing connection with my neighbor today.<br />
<br />
Go forth and be seen!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-63883061555008161532017-06-07T21:39:00.000-04:002017-06-08T15:42:41.344-04:00A Big Advance in Cancer Care<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirfoTihlDZwCft6pKHerVLAsp7ou9QWdyTuJTtlRscFykG-0mWdS_UZqX8BR5OYidGkwXE48y_k_C3cy8fl1NEoXF1gCqMBV_MqnJDEQnciIii27GsRjJghx-CQd4cME_2zZa6REYkg_k/s1600/2017-06-07+milestone.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirfoTihlDZwCft6pKHerVLAsp7ou9QWdyTuJTtlRscFykG-0mWdS_UZqX8BR5OYidGkwXE48y_k_C3cy8fl1NEoXF1gCqMBV_MqnJDEQnciIii27GsRjJghx-CQd4cME_2zZa6REYkg_k/s320/2017-06-07+milestone.png" width="320" height="240" data-original-width="640" data-original-height="480" /></a>
<p>
One May 23 a very significant event took place in the history of cancer treatment. The <a target="blank" href="https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm560167.htm">FDA approved</a> use of an existing drug for first line treatment of cancers based purely on specific DNA changes in the tumor, regardless of the body site of the tumor.
</p>
<p>
This is a first for the FDA. All previous cancer drug approvals have been for cancer originating in specific body site such as colon, breast, lung, etc.
</p>
<p>
This is a long post, but I want to describe the context so you can understand the significance of this event.
</p>
<p>
After the human genome was sequenced at the beginning of the 21st century, cancer researchers began to discover that some DNA changes were common in cancers originating in the same site: for example, a particular DNA mutation in the gene called BRAF is common in colon cancers. Drugs - called <i>targeted therapies</i> - were developed to kill cells with that specific mutation. Similar targeted therapies were developed for other mutations, which had common occurrence in other tumor sites.
</p>
<p>
Targeted therapies were a great advance and they are still being developed. But most of them produce <i>drug resistance</i>. The drug kills the cells at which it is aimed, but the tumor <i>evolves</i>. Yes, just like Darwin described: other cells in the tumor do not carry the targeted mutation and are thus more adapted to their environment and outcompete the targeted cells. The drug stops working and the tumor grows again: cancer recurrence.
</p>
<p>
In a separate thread, cancer researchers have wondered since the 1960s why the immune system doesn't attack tumors. One core answer to that question is provided by Siddhartha Mukherjee in "The Emperor of All Maladies": cancer is us. It is not a foreign substance or organism in the body, it is our own cells that have sustained DNA damage and lost control over their growth and division. Thus the immune system does not generally recognize cancer cells as foreign.
</p>
<p>
The immune system is incredibly complex. But knowing the human genome and being able to use that knowledge as a scaffold has allowed researchers to gain much more understanding of adaptive immune cell function; specifically the proteins on the surface of <a target="blank" href="https://en.wikipedia.org/wiki/T_cell">T cells</a> and <a target="blank" href="https://en.wikipedia.org/wiki/B_cell">B cells</a>, the core components of the adaptive immune system.
</p>
<p>
The most significant discovery in this realm so far was that some tumors could "hide" from the immune system by manufacturing a specific protein (<a target="blank" href="https://en.wikipedia.org/wiki/PD-L1">PD-L1</a>). Drug companies were able to make drugs that target that protein, unmasking the tumor cells and "releasing the brakes" on the immune system so that it would attack the tumor.
</p>
<p>
Results have been spectacular. It is not an exaggeration to say that this has been the single most significant impact on cancer care in decades. Cancers that were death sentences before these drugs, such as the first approved cancer type, metastatic melanoma, suddenly were treatable and some patients cancers disappeared completely (e.g. Jimmy Carter).
</p>
<p>
This class of drug is called <i>immunotherapy</i> for obvious reasons.
</p>
<p>
Unfortunately, these drugs don't work for all tumors. They currently produce a partial or complete response in about 30-40% of the cancers in which they are most used. So the obvious question is: why? And can we tell ahead of time which patients will benefit?
</p>
<p>
One of the drugs (pembrolizumab, marketed by Merck in the US as Keytruda) uses a <i>biomarker</i> to try to determine a patient's likely response. A biomarker is just a biological factor you can measure. Simple examples are weight or blood type. A more complex one (to measure) is amount of PD-L1 produced by a tumor. Pembrolizumab was believed to work in patients with "high" PD-L1 expression and was approved by the FDA for patients with that biomarker - in specific cancers.
</p>
<blockquote>[Full disclosure: I used to be employed by Merck but I have no current financial interest]
</blockquote>
<p>
But more recent research has shown that what might really tell us which patients will respond to immunotherapies is how many mutations they have in their tumor cells' DNA. DNA is the template for proteins; DNA mutations can result in changes in the proteins produced. The theory is that the more mutations a cell has, the more changes are likely to occur in the proteins the cell has on its surface. And the more protein changes on the cell surface, the more likely the immune system will recognize the cell as "bad" and kill it.
</p>
<p>
As I've described in previous posts and above, cancer is a disease of the DNA. Accumulated mutations eventually <i>activate</i> an <i>oncogene</i>, causing cells to lose control over growth and division, or mutations disable a <i>tumor suppressor gene</i>, leading to the same problem.
</p>
<p>
Cells have multiple mechanisms to repair DNA damage and do so on a regular basis. But if you end up with mutations in the repair mechanisms, you're in trouble. One of these mechanism is <i><a target="blank" href="https://en.wikipedia.org/wiki/DNA_mismatch_repair">mismatch repair</a></i>. Loss of the mismatch repair mechanism can lead to one specific type of hypermutation called <i><a target="blank" href="https://en.wikipedia.org/wiki/Microsatellite_instability">microsatellite instability</a></i>.
</p>
<p>
These two characteristics of tumor DNA lead to high <i>tumor mutational load</i>. Remember that a high number of mutations seems to increase the likelihood that a tumor will respond to immunotherapy.
</p>
<p>
And now we're back at the the recent FDA approval. It says:
</p>
<blockquote>Keytruda (pembrolizumab) is indicated for the treatment of adult and pediatric patients with unresectable or metastatic solid tumors that have been identified as having a biomarker referred to as microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR). This indication covers patients with solid tumors that have progressed following prior treatment and who have no satisfactory alternative treatment options and patients with colorectal cancer that has progressed following treatment with certain chemotherapy drugs.</blockquote>
<p>
The most important part is that it is approved for <i>any</i> solid tumor that has these DNA characteristics, regardless of the body site in which the tumor arose.
</p>
<p>
[You may not be used to the term solid tumor. It means what it sounds like: a cohesive mass of cancer cells in a mass. <i>Liquid tumors</i> includes such cancers as leukemias and lymphomas in which the cancer cells are distributed through the body in blood, bone marrow or the lymphatic system.]
</p>
<p>
People like myself who work in cancer genomics have long "known" that a day would come when we would treat cancers by their molecular (DNA) characteristics instead of their site of origin.
</p>
<p>
This FDA approval represents the first milestone in that transition.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-14581089729847031442017-05-05T11:33:00.000-04:002017-05-06T10:28:25.860-04:00Four Years<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK9IW3KLMjygR_BZ3GQAkMu7vgCDFQIdGjotcSjin2vS7xCx4HkzNUpSkQSUMoKZtNadOq4lPzk0dwcH4yp4_tUx5gyjaQgNeFDeDh15VqZU9pVR4wOKPAE1S8sohxNZMADBOmB1JjWnE/s1600/2017-05-05+four+candles.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK9IW3KLMjygR_BZ3GQAkMu7vgCDFQIdGjotcSjin2vS7xCx4HkzNUpSkQSUMoKZtNadOq4lPzk0dwcH4yp4_tUx5gyjaQgNeFDeDh15VqZU9pVR4wOKPAE1S8sohxNZMADBOmB1JjWnE/s320/2017-05-05+four+candles.jpg" width="320" height="180" /></a>
<p>
May 6, 2013 was the day I first visited my doctor about a sensation in my throat. She noticed a <a href="http://www.cancerfuntime.com/2013/05/is-that-lump-in-your-neck-or-are-you.html">lump on my neck</a>.
</p>
<p>
Thus, today is the fourth anniversary of my cancer diagnosis.
</p>
<p>
I'm doing just fine, thank you. I go in for surveillance follow-ups every six months now with my next appointment in July.
</p>
<p>
Cancer survival statistics are based on "5-year survival", which is pretty simple: is the patient alive or dead five years from diagnosis? If a particular cancer is going to kill you, it usually does so by then.
</p>
<p>
So, a year from today I'll (hopefully) be an official survival statistic!
</p>
<p>
Since we're on the topic of cancer survival, I thought I'd take the opportunity to give you the big picture.
</p>
<p>
One thing I've learned in my new job is where cancer statistics come from: cancer registries.
</p>
<p>
Every hospital that treats cancer must report cancer incidence to their state registry. The process is designed so that a particular patient is only reported once (even though they may be treated at multiple hospitals) to avoid double counting.
</p>
<p>
These registries are staffed by Certified Tumor Registrars. These are specially trained people, many with medical backgrounds, who carefully curate each cancer case to accurately record data such as patient demographics (age, gender, zip code, etc.) date of diagnosis (important for survival statistics), actual diagnosis, site of the tumor, initial treatment and response to initial treatment, and a whole bunch of other data.
</p>
<p>
That data is collected at the state or regional level and then reported onward to the federal government through two programs: the National Cancer Institute's <a target="blank" href="https://seer.cancer.gov/about/">SEER program</a> (Surveillance, Epidemiology, and End Results, covering about 28% of the US population in 15 regions) or the CDC's <a target="blank" href="https://www.cdc.gov/cancer/npcr/">National Program of Cancer Registries</a> (covering 45 states and D.C.).
</p>
<p>
Here's a diagram I made for a talk I'm giving soon that illustrates the process (click to embiggen):
</p>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoutW38f8WC_ZxOx0Es_85ywhl-9SfYqL3tVYr0TaoirDDdbDlTBynJ1hzl529MlyV81pEYW-2mMoGRSROyGWwiTSRf38uVxsxkcYk_35ZXZCCZvRnK9Lrwabogbm69Iefrn8B_eOp1i0/s1600/2017-05-05+registries.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoutW38f8WC_ZxOx0Es_85ywhl-9SfYqL3tVYr0TaoirDDdbDlTBynJ1hzl529MlyV81pEYW-2mMoGRSROyGWwiTSRf38uVxsxkcYk_35ZXZCCZvRnK9Lrwabogbm69Iefrn8B_eOp1i0/s320/2017-05-05+registries.png" width="320" height="173" /></a>
<p>
All that careful data collection enables us to see trends in cancer over long periods of time.
<p>
Here are the stats on new cancer incidence and death rates as of 2013:
</p>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkNItioyrpwRvUQMB-MePg07oxX7QJUBysZItgEUXWY635FfUJB_m5OjUxky8RtB-X-fwUtVZhMl4KNhaOX_O5jDXCENNEdqK1dT9Wygf7-h3tHuGZQvtBVx_fcXUDT0hzIG7XdgcJGi8/s1600/2017-05-05+incidence.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkNItioyrpwRvUQMB-MePg07oxX7QJUBysZItgEUXWY635FfUJB_m5OjUxky8RtB-X-fwUtVZhMl4KNhaOX_O5jDXCENNEdqK1dT9Wygf7-h3tHuGZQvtBVx_fcXUDT0hzIG7XdgcJGi8/s320/2017-05-05+incidence.png" width="320" height="105" /></a>
<p>
The long-term trends are encouraging. Here are graphs showing changes in cancer survival for the most common forms of cancer, comparing survival in the 1975-1977 period to the 2006-2012 period:
</p>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE-8C7XV8L1s3KqLaZ1j_fXN5di2eEMPagseCw3RaiHJVxmAnQxsFpPPEuI4ccwRN7oXrv72ayPq9gw4kCo-WNquu4i2rfbExMWKk3ks8_Hca3PavglnrqDBL1hAfwy3z12tkgD4Qi8ZM/s1600/2017-05-05+survival.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE-8C7XV8L1s3KqLaZ1j_fXN5di2eEMPagseCw3RaiHJVxmAnQxsFpPPEuI4ccwRN7oXrv72ayPq9gw4kCo-WNquu4i2rfbExMWKk3ks8_Hca3PavglnrqDBL1hAfwy3z12tkgD4Qi8ZM/s320/2017-05-05+survival.png" width="320" height="280" /></a>
<p>
Some highlights:
</p>
<ul>
<li>In the 1970s you had 75% chance of surviving breast cancer. Now you're chances are above 90%.</li>
<li>Prostate cancer 5-year survival was 67.8% and is now above 99%.</li>
</ul>
<p>
There are still too many cancer types in which we haven't made much progress: lung and pancreatic cancer are still very bad news, for example.
</p>
<p>
Many of the cancer types with poor survival, especially those two, are due to the fact they tend to be asymptomatic and therefore are not discovered until they are at an advanced stage.
</p>
<p>
Researchers are hard at work on that. Tumors, including nascent ones, shed both complete cells and also contents of dead cells into the bloodstream. There is hope that "liquid biopsies", which aim to detect cancer cells or cancer cell DNA in the bloodstream, will be able to detect these and other cancers much earlier. That approach is still a ways from routine use. As you can imagine, the number of tumor cells or amount of tumor DNA in the bloodstream is very low; identifying them reliably is like trying to tune in a very weak radio signal.
</p>
One advance that doesn't yet show up in the survival statistics above, since they currently cover the period through 2013, are the "immunotherapy" drugs Opdivo (nivolumab) and Keytruda (pembrolizumab). These are among the first approved drugs that leverage the immune system to attack cancer - they essentially "decloak" the cancer so the immune system can see it. These drugs were approved by the FDA in 2014 and have had a dramatic effect in some cancers, especially metastatic melanoma (melanoma that has spread). <a target="blank" href="http://www.onclive.com/conference-coverage/asco-2016/pembrolizumab-3year-survival-rate-hits-40-in-melanoma">About a third of these patients</a>, for whom the prognosis was previously less than one year of survival, have experienced complete remission.
</p>
<p>
Anyway, I'm glad to still be here four years after my own diagnosis. And I look forward to becoming a statistical survivor a year from now.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-27149605459294722542017-04-03T21:36:00.000-04:002017-04-03T21:36:09.413-04:00The End of PAP Smears?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijedRC7k_TKmoHVGehTrA_r_jUMm9qtLUsXGk5s0NR3mMUqeDZNQZK8gP0la3_976vlGOVueTOyyaMr4kE8gOqJao0NmgOrEJIZ9aYHSs3EVJuIka5PmNqEqpYiNpLZchTw2oZZh6lc0Y/s1600/2017-04-03-swabs.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijedRC7k_TKmoHVGehTrA_r_jUMm9qtLUsXGk5s0NR3mMUqeDZNQZK8gP0la3_976vlGOVueTOyyaMr4kE8gOqJao0NmgOrEJIZ9aYHSs3EVJuIka5PmNqEqpYiNpLZchTw2oZZh6lc0Y/s320/2017-04-03-swabs.jpg" width="320" height="320" /></a>
<p>
I've <a href="http://www.cancerfuntime.com/2014/08/have-teens-in-your-life-been-vaccinated.html">written</a> <a href="https://www.blogger.com/blogger.g?blogID=6861671213619210120&pli=1#editor/target=post;postID=8264950275165234090;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=1;src=link">several</a> <a href="https://www.blogger.com/blogger.g?blogID=6861671213619210120&pli=1#editor/target=post;postID=2905614713635718932;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=0;src=link">times</a> about the importance of HPV vaccination for all young teens, and commented that if all teens were vaccinated HPV would vanish, and so would cervical cancer and my type of oral cancer. PAP smears would no longer be necessary.
</p>
<p>
Now there's news that PAP smears may already be on their way out.
</p>
<p>
<b>DO NOT take this as advice to stop getting PAP smears as recommended!
</b>
</p>
<p>
When the PAP smear was developed (by <a target="blank" href="https://en.wikipedia.org/wiki/Georgios_Papanikolaou">Georgios Papanikolaou</a>) it was a breakthrough in women's health. It has saved millions of lives by this point. But we subsequently discovered that most cervical cancers are caused by infection with Human Papillomavirus (HPV). Thus, detection of persistent HPV infection is a much earlier indicator of risk for cervical cancer than PAP smears.
</p>
<p>
Here is a <a target="blank" href="https://www.statnews.com/2017/03/01/pap-smear-cervical-cancer-hpv/">STAT News article</a> that covers the topic well. One highlight:
</p>
<blockquote>There are signs it’s catching on. Last year, the Netherlands wholesale switched from Pap tests to HPV tests, and Australia is set to follow in its footsteps this year. The journal Preventive Medicine devoted an entire issue to HPV testing in February. Clinical trials of at-home HPV testing are underway across the US, Europe, and Canada.</blockquote>
<p>
</p>
<p>
</p>
<p>
</p>
<p>
</p>
<p>
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-64394845727815201062017-04-02T20:35:00.000-04:002017-04-03T07:41:45.628-04:00Tumor Board<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3Ido4RMVe5M6rXFySoiMEqHF-qu1CC59WZ8j9Mggls4WzymzRYO59yN-sK4K2QJzoqD4zr2U4GSDXTGTMoPBLEb9LW6BXa12g1-78RZKrwYdfxJWaVv0XTmjXix5ua52nrGjrYhehuac/s1600/2017-04-02-tumor-board.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3Ido4RMVe5M6rXFySoiMEqHF-qu1CC59WZ8j9Mggls4WzymzRYO59yN-sK4K2QJzoqD4zr2U4GSDXTGTMoPBLEb9LW6BXa12g1-78RZKrwYdfxJWaVv0XTmjXix5ua52nrGjrYhehuac/s320/2017-04-02-tumor-board.jpg" width="320" height="180" /></a>
<p>
I wrote back in the fall that I had changed jobs and now work at the cancer center where I was treated: the Dana-Farber Cancer Institute. I work in Informatics, which is at the boundary between Computer Science and research - we try to use information technology to enable and accelerate scientific progress.
</p>
<p>
DFCI has a very strong research program and most doctors treating patients in the clinic are also researchers. A key part of my job is to understand the landscape of cancer treatment and research. To further that knowledge, this week I attended my first Tumor Board.
</p>
<p>
A Tumor Board is a regular meeting of a group of oncologists, surgeons, radiologists and related providers at which they discuss challenging cancer cases. Cases are put on the agenda by a doctor treating the patient and the Tumor Board is an opportunity to seek advice from peers regarding options for the patient.
</p>
<p>
The meeting looked very much like the photo above, but that is a random photo I found on the internet.
</p>
<p>
This first board I attended was for the Head and Neck Oncology Center, which is the "disease center" in which I was treated. In fact, one of my oncologists was present and the other was mentioned several times.
</p>
<p>
I came away from the meeting with two observations:
</p>
<p>
One: these people are amazingly skilled. I was especially impressed by the radiologist at the podium who would bring up the medical imagery (CT, MRI, PET or ultrasound scans) for the patient being discussed. He was impressively fast at finding just the right image to illustrate the aspect of the case that was under discussion, in real time as doctors were describing the case.
</p>
<p>
Two: I am damn lucky. My case was simple. I was given the standard of care for my cancer type and I experienced a "complete response" (i.e., my tumor disappeared). The patients discussed at Tumor Boards are not lucky. They either did not receive the correct treatment (elsewhere), or they did not respond to that treatment (or to subsequent treatments). The options discussed for these patients were poor, including very disfiguring surgery.
</p>
<p>
I mentioned standard of care. That means the currently accepted best treatment for each specific cancer type. These are based on clinical evidence and are published in several forms. One is the <a target="blank" href="https://www.nccn.org/professionals/physician_gls/f_guidelines.asp">National Comprehensive Cancer Network (NCCN) Guidelines</a>.
</p>
<p>
Believe it or not, not all cancer patients receive the standard of care, typically due to oncologists who have not kept up with the current state of the field. Academic cancer centers like DFCI see many referred patients whose initial treatment was suboptimal, leaving patients with poorer options.
</p>
<p>
As I've written before, if you are diagnosed with cancer and offered a treatment plan: <b><i>get a second opinion!</i></b> My bias is that you get that second opinion at an academic cancer center. One way to to find one of those is to look at <a target="blank" href="https://www.cancer.gov/research/nci-role/cancer-centers/find">National Cancer Institute Comprehensive Cancer Centers</a>.
</p>
<p>
If the treatment plan proposed by the second opinion team (and your plan should be proposed after you have been seen by a multi-disciplinary <i>team</i>) agrees with the plan proposed by your local oncologist then by all means get treated locally. If the first and second opinions do not agree, either assess them for yourself using the guidelines above or seek a third opinion and go with the majority.
</p>
<p>
The choice you make for primary treatment will limit subsequent choices you will have - don't be a passive patient and just follow what the first oncologist recommends.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-29056147136357189322016-10-22T11:09:00.000-04:002017-04-02T21:38:09.998-04:00HPV Vaccination Update<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwW5IwOW5eG6hsJC7EDcTH0T0L6yW0dlNtovUuI4xXxMXoNOBMPRP1fR7weTEYbxtSRR1KMMDp2rD63NpaRyAJzVPJtx8w8aN1HmEOLRr9IsWmPklK938MZSoljuRTzjrLy9Rldmdzab4/s1600/2016-10-22+CDC+HPV+Vaccine.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwW5IwOW5eG6hsJC7EDcTH0T0L6yW0dlNtovUuI4xXxMXoNOBMPRP1fR7weTEYbxtSRR1KMMDp2rD63NpaRyAJzVPJtx8w8aN1HmEOLRr9IsWmPklK938MZSoljuRTzjrLy9Rldmdzab4/s320/2016-10-22+CDC+HPV+Vaccine.jpg" width="320" height="320" /></a>
<p>
My cancer is one of the very few types that have a known, direct cause: Human Papillomavirus or HPV. Most people are infected with HPV at least once in their lifetime. Most infections clear on their own. Some infections don't, and uncleared infections with certain strains of the virus turn into cancer. It's the primary cause of cervical cancer. It's also becoming the leading cause of oral cancers like mine.
</p>
<p>
Since 2006, we have had a vaccine for HPV. It is the only preventive cancer vaccine we have. The <a target="blank" href="http://www.cdc.gov/hpv/parents/vaccine.html">CDC recommends</a> that all children aged 11-12 be vaccinated. Vaccinations are recommended for women up to age 29 and men up to age 21.
</p>
<p>
Vaccination rates are still way too low. Here are the <a target="blank" href="http://www.cdc.gov/mmwr/volumes/65/wr/mm6533a4.htm">latest stats</a> from the CDC:
</p>
<blockquote>In 2015, among males, coverage with ≥1 HPV vaccine dose was 49.8% and with ≥3 doses was 28.1%; among females coverage with ≥1 dose was 62.8% and with ≥3 doses was 41.9%</blockquote>
<p>
Even at those disappointing vaccination rates, the vaccine is already having an impact:
</p>
<p>
<blockquote><a target="blank" href="http://www.cbsnews.com/news/hpv-infection-way-down-in-teen-girls-due-to-vaccine-study-shows/">HPV vaccine is having a big impact, study shows</a> (CBS News, February 22, 2016)</blockquote>
<blockquote><a target="blank" href="http://theincidentaleconomist.com/wordpress/more-evidence-that-the-hpv-vaccine-works/">More evidence that the HPV vaccine works</a> (Incidental Economist, October 11, 2016)</blockquote>
</p>
<p>
Ultimately, if every teen were vaccinated, almost all cervical cancers and many oral cancers would disappear. Pap smears would become either unnecessary or at least recommended at longer intervals. That's already starting to happen.
</p>
<blockquote><a target="blank" href="http://news.harvard.edu/gazette/story/2016/10/cervical-cancer-screening-could-be-less-frequent-start-later/">Cervical cancer screening could be less frequent, start later</a> (Harvard Gazette, October 17, 2016)</blockquote>
<p>
In studies investigating why vaccination rates are low, the number one reason given by parents is "my pediatrician didn't recommend it." The number one reason pediatricians give for not recommending the vaccination is discomfort discussing sexuality with parents. There are now efforts emerging to boost pediatrician recommendations by shifting the focus from sex to cancer.
</p>
<blockquote><a target="blank" href="https://www.washingtonpost.com/national/health-science/cancer-doctors-leading-campaign-to-boost-use-of-hpv-vaccine/2016/06/19/1e5eb65a-2e8e-11e6-9de3-6e6e7a14000c_story.html">Cancer doctors leading campaign to boost use of HPV vaccine</a> (Washington Post, June 19, 2016)</blockquote>
<p>
Another obstacle to vaccination is the original requirement for three doses spaced over six months. This required three trips to the pediatrician, and many kids were not completing the series. But that also provided populations of partially-vaccinated kids for research on whether fewer doses were sufficient. Based on that research, the CDC this week changed the recommendation to just two doses spaced six to twelve months apart if the vaccinations are given before age 15. This is expected to help increase vaccination rates.
</p>
<blockquote><a target="blank" href="https://www.washingtonpost.com/news/to-your-health/wp/2016/10/19/advisory-panel-recommends-just-two-hpv-vaccine-doses-for-many-children/">CDC now recommends just two HPV vaccine doses for preteens</a> (Washington Post, October 19, 2016)</blockquote>
<p>
Finally, Merck, the maker of Guardasil (the HPV vaccine) has just started running a commercial to guilt-trip parents into getting their kids vaccinated.
</p>
<blockquote><a target="blank" href="https://www.washingtonpost.com/news/to-your-health/wp/2016/08/11/do-the-new-merck-hpv-ads-guilt-trip-parents-or-tell-hard-truths-both/">Do the new Merck HPV ads guilt-trip parents or tell hard truths? Both.</a> (Washington Post, August 11, 2016)</blockquote>
<p>
If you are a parent of a child or adolescent, it is also my purpose here to guilt trip you. With a very simple action on your part, you can, with almost 100% certainty, prevent your child from ever developing cervical or HPV-related oral cancer.
</p>
<p>
My 12-year-old received her three-dose series earlier this year. My 10-year-old will get vaccinated next year.
</p>
<p>
What possible legitimate reason could you have for not providing your children with this protection?
</p>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6861671213619210120.post-58094862503463700722016-10-20T20:53:00.000-04:002016-10-22T09:51:27.752-04:00Returning the Favor<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOmkQ38oiaTGasKf9Ha8Y33B5LRwS0Yd5eK2JAJZQaKQx0Wr6YznnOLsjydphc2Mqd5xnl2Kcn18VRMrMSi5xr4iMVcFMJJReZl91B8ToTVx9kwtxO1j74t3s_qoab35I-ncVzSVibX6s/s1600/2016-10-20+dana+farber+logo.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOmkQ38oiaTGasKf9Ha8Y33B5LRwS0Yd5eK2JAJZQaKQx0Wr6YznnOLsjydphc2Mqd5xnl2Kcn18VRMrMSi5xr4iMVcFMJJReZl91B8ToTVx9kwtxO1j74t3s_qoab35I-ncVzSVibX6s/s320/2016-10-20+dana+farber+logo.png" width="320" height="235" /></a>
<p>
I have a bit of news.
</p>
<p>
At the beginning of September I changed jobs, leaving behind 10 years working to enable genomics research in pharmaceutical & biotech drug discovery to join the new Informatics department at the Dana-Farber Cancer Institute. Dana-Farber is ranked as the fourth best cancer center in the US by <a target="blank" href="http://health.usnews.com/best-hospitals/rankings/cancer">US News and World Report</a> (for my Seattle friends, the Seattle Cancer Care Alliance, which includes the Fred Hutchinson Cancer Research Center, is #7). I'm proud to have the opportunity to work at such a distinguished institution.
</p>
<p>
Those who followed my treatment story on this blog know that I was treated at Dana-Farber in 2013. You also know that I received excellent care and that I am very grateful to "the Fahbah" (as Bostonians call it). I joke that I'm returning to the scene of the crime, but really I'm there to return the favor: to do what I can to improve outcomes for future cancer patients.
</p>
<p>
I consider it quite an honor.
</p>
<p>
It's a very exciting time in cancer research. Normally progress in cancer treatment is slow and painfully incremental, with new treatments for difficult forms of the disease perhaps providing a few months of life beyond the previous best treatment. But in the past 15-20 years science has learned a great deal about the unbelievably complex human immune system; enough that in the past five years breakthroughs in "immuno-oncology" (using the immune system to fight cancer) have provided startling improvements in prognosis for some formerly deadly forms of the disease such as metastatic melanoma.
</p>
<p>
One of these breakthrough drugs put Jimmy Carter's cancer into complete remission.
</p>
<p>
So far these new treatments are only working in a few cancer types, and only in a fraction of patients with those forms. But the field is energized and hopeful that these gains can be expanded.
</p>
<p>
I was not looking for a new job - this one came and found me. The man who was my boss' boss for about seven years back in pharma was recruited to Dana-Farber to build a new department from a collection of existing groups plus new growth. This is a person I respect greatly for his intelligence, creativity and most of all his demonstrated leadership abilities. For him to reach out to me to come and join him was the biggest professional compliment I have ever received. So not only am I motivated to help patients; I'm also motivated to live up to that trust.
</p>
<p>
I'm finishing my seventh week tomorrow. At least once per week I have texted Wonderful Wife sometime in the middle of my busy day to tell her,
</p>
<blockquote>"I love my job. I made the right move."
</blockquote>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-69248466691450640722016-05-05T22:26:00.001-04:002016-05-05T22:26:43.215-04:00Excuse Me<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOLtpQZQvQx8NW6VTIJL3zWtvuCqC2H9BlfYcSpLYKnq6mjtgVX_CLTCcgYPQC6KktHwsmVriBHtW7Gs2LllV7iTc6pDaViz9mmFb1bFZ5VKJorBM1UuHJQr7MeIoIYmMKuvweu4dWzXs/s1600/2016-05-05+cough.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOLtpQZQvQx8NW6VTIJL3zWtvuCqC2H9BlfYcSpLYKnq6mjtgVX_CLTCcgYPQC6KktHwsmVriBHtW7Gs2LllV7iTc6pDaViz9mmFb1bFZ5VKJorBM1UuHJQr7MeIoIYmMKuvweu4dWzXs/s320/2016-05-05+cough.jpg" /></a>
<p>
Hi there!
</p>
<p>
Yup, I'm still here.
</p>
<p>
As a friend said the other day, "I assume that since you aren't posting much on Cancer Fun Time! you are enjoying Wellness Fun Time!"
</p>
<p>
Indeed I am.
</p>
<p>
But here's a funny post-cancer thing.
</p>
<p>
Long time readers know that among the permanent side effects of my treatment is a dry mouth due to radiation damage to my saliva glands. I'd estimate I have maybe 30-40% of normal saliva amount.
</p>
<p>
That has several downstream effects, including the need for extra liquid when I eat and probably bad breath that no one tells me about.
</p>
<p>
It also means that I usually have a plug of mucous in my throat because it isn't being constantly rinsed by saliva. So I cough more often than normal (which fellow subway riders don't appreciate), and I also clear my throat a lot.
</p>
<p>
I clear my throat so often that I do it unconsciously. Several times now I've done it while walking behind one or more people on the sidewalk, and they have interpreted my throat clearing as a request to pass them and they've stepped aside.
</p>
<p>
The first time I sort of tried to tell them as I passed that I wasn't signalling them.
</p>
<p>
But now I just chuckle a little to myself and go on my way.
</p>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-82649502751652340902016-03-05T11:36:00.000-05:002017-04-02T21:38:18.980-04:00HPV vaccination works. Vaccinate your tweens!<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="http://theincidentaleconomist.com/wordpress/remember-the-hpv-vaccine-it-really-works" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtmupnm8cXf4QucO76YHoCW9TPDZ-Pna6AX2eK4VP9BI4MHkGxB7Bj84tTjHVnasqvE5hqHKV1lfKaFjyDvzAdPg1JkQGgDYYY5wlOgoPLX8LxyxbY1NuYvIH7vK2lSnJ_0uuZxPQfLbw/s320/2016-03-05+hpv+vaccine.jpg" /></a>
</div>
<p>
Let me start by saying that if you are an anti-vaxxer, turn around right now and go somewhere else. I don't really want to waste my breath on you. In the words of <a target="blank" href="https://en.wikipedia.org/wiki/Daniel_Patrick_Moynihan">Daniel Patrick Moynihan</a>:
</p>
<blockquote>"Everyone is entitled to his own opinion, but not to his own facts."</blockquote>
<p>
And the fact is that vaccines are safe. Period. There is no <i>real</i> scientific debate on this topic.
</p>
<p>
OK, got that out of the way.
</p>
<p>
One vaccine that you know is close to my heart is the HPV vaccine (Human papillomavirus). Had the HPV vaccine existed when I was an adolescent, and had I received it, my cancer would have been prevented.
</p>
<p>
The <a target="blank" href="http://www.cdc.gov/hpv/parents/vaccine.html">CDC has recommended</a> since 2006 that all girls aged 11 and 12 receive the HPV vaccine, and has recommended the same for boys since 2011. Teens and young adults who did not receive the vaccine still should: the current guidelines specify vaccinations of males up to age 21 and females up to age 26.
</p>
<p>
Since the initial recommendation is now 10 years old, we have some pretty good history available to see <a target="blank" href="http://pediatrics.aappublications.org/content/early/2016/02/19/peds.2015-1968">how the vaccine is working</a> in the population. The graph above shows the rate of HPV infection in young women in the United States before and after the vaccine was introduced. Note the huge decrease in infection in the age groups that were covered by the recommendation. Among girls who were vaccinated, only 2% were infected as opposed to 17% of unvaccinated girls.
</p>
<p>
This will prevent hundreds of thousands of cancers in both sexes in the decades to come. If all kids were vaccinated, cervical and other HPV-related cancers would disappear. Eventually, Pap smears would disappear, too.
</p>
<p>
But vaccination rates are far too low: only about 40% of girls and 20% of boys are being vaccinated.
</p>
<p>
As I've urged many times before: if you are the parent of an adolescent, please vaccinate him or her!
</p>
<p>
The argument that vaccinating your child to protect them from a sexually-transmitted virus will encourage them to have sex earlier is, first of all, absurd. And secondly, it's selfish. That's putting your own puritanical beliefs before the life of your child.
</p>
<p>
Sex won't kill them.
</p>
<p>
Cancer might.
</p>
<p>
Coincidentally, Progeny the Elder just turned 12. She received her first dose of the vaccine this week.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-68045794261087560942015-10-06T20:22:00.001-04:002015-10-06T20:22:41.051-04:00Cheeseburger, Cheeseburger<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-kppu_GCGpsfmvuJU9FoBwAmLGOJ5PvLWljIHvx-0pAxKD6h1q4vvjLYaS4Iu7uTyLVOg6gGpgKkAhT_H9ccYO2hQAHO8orOZ-TODHuZTOu2uM1_Nm3F9H49qa7sfU5QGO9kh78B0vWk/s1600/2015-10-06+tasty+burger.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-kppu_GCGpsfmvuJU9FoBwAmLGOJ5PvLWljIHvx-0pAxKD6h1q4vvjLYaS4Iu7uTyLVOg6gGpgKkAhT_H9ccYO2hQAHO8orOZ-TODHuZTOu2uM1_Nm3F9H49qa7sfU5QGO9kh78B0vWk/s320/2015-10-06+tasty+burger.jpg" /></a>
</div>
<p>
Way, way back when I was <a href="http://www.cancerfuntime.com/2013/08/i-can-has-cheezburger.html">first starting to eat again</a> after treatment, my strongest desire was for a cheeseburger.
</p>
<p>
Not just any cheeseburger, but a cheeseburger from <a target="blank" href="http://www.tastyburger.com/">Tasty Burger</a>.
</p>
<p>
It's a small chain in Boston. I used to eat lunch there when I worked near the original location a few years ago.
</p>
<p>
In the fall of 2013 when I was craving that cheeseburger I was a long way from eating it. It took months to get back to eating most normal foods.
</p>
<p>
Plus, ground meat has been one of the most hit-or-miss foods. It must be the fat content or something else that varies with the particular meat: sometimes the texture of ground beef is fine and sometimes it is disgusting. Ground turkey has been really bad each of the few times I've tried it.
</p>
<p>
Today was my routine surveillance check-up at Dana-Farber, with Dr. Chemo.
</p>
<p>
All was well, of course.
</p>
<p>
It's now past two years since the end of treatment. Dr. Chemo said I'm now "on cruise control".
</p>
<p>
Nine months until my next appointment with her.
</p>
<p>
It so happened that my appointment ended at lunch time and Wonderful Wife and I were hungry. Tasty Burger is right down the street.
</p>
<p>
The result?
</p>
<p>
It was delicious!
</p>
<p>
How's that for a long range milestone?
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-62988118094169859902015-07-23T21:05:00.000-04:002015-07-23T21:05:15.204-04:00My Turn<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxdMxluzmqbqILL3it0iNaMQGByJgcAjpVKQ04yV22BhgqMGhgBtFEw0Nvoo4gYBn60Vn7oduFZCtJgnAVVyiegKA0dS4Fk6telWVWDV6hdUxZhyvphsozqjfIACBIvHdMhxwCntRC6qU/s1600/2015-07-23+nurse+hat.jpeg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxdMxluzmqbqILL3it0iNaMQGByJgcAjpVKQ04yV22BhgqMGhgBtFEw0Nvoo4gYBn60Vn7oduFZCtJgnAVVyiegKA0dS4Fk6telWVWDV6hdUxZhyvphsozqjfIACBIvHdMhxwCntRC6qU/s320/2015-07-23+nurse+hat.jpeg" /></a>
</div>
<p>
Wonderful Wife has had recurrent annoying health issues related to her throat and jaw for a couple of years. She has seen an ENT for these issues several times and they eventually came to the conclusion that removing her tonsils was likely to provide relief.
</p>
<p>
One issue she has had is tonsil stones, formally called <a target="blank" href="https://en.wikipedia.org/wiki/Tonsillolith">tonsilloliths</a> (if you want to gross yourself out, do an image search for that). They felt constantly irritating to her. She described it as feeling like someone was constantly poking her tonsil with a sharp pencil.
</p>
<p>
In May she decided to go for it. She scheduled the surgery for July.
</p>
<p>
Then, as is her way, she started researching.
</p>
<p>
She discovered that a tonsillectomy is a pretty serious operation for an adult. The post-op nurse told me that they are roughly the size of golf balls in an adult. Those are a couple pretty big hunks of tissues to cut out of one's throat!
</p>
<p>
She also read about ways to prepare foods she'd be able to eat: lots of frozen fluids like broth, Ensure, Jello, etc.
</p>
<p>
Most adults do not like to eat a lot of ice cream post-tonsillectomy: the injury already causes increased mucous production and dairy exacerbates that for some people.
</p>
<p>
Anyway...
</p>
<p>
Wonderful Wife was going to need some TLC for at least a week. She would be in fairly serious pain.
</p>
<p>
It was time for me to pay back a tiny portion of all that loving care she gave me two years ago.
</p>
<p>
The ENT called me immediately after the surgery to tell me everything went fine. He commented that he thought Wonderful Wife's tonsils had more stones than any he could ever remember.
</p>
<p>
Also, almost under his breath, he mentioned that he was sending the larger one for lymphoma screening. Uhhh. I wasn't sure if his delivery indicated that it was completely routine, or that he was concerned but didn't want to give that away. He happens to be a practice partner of my ENT, Doctor B. So he knows my history.
</p>
<p>
I arrived at the hospital a short time later, with Progeny the Younger, and found Wonderful Wife in the recovery room. She had a huge smile on her face and seemed very happy. Probably a mixture of residual anesthetic and relief. She was still pretty woozy, but we got her dressed and wheeled out to the car and shortly thereafter I had her resting in bed.
</p>
<p>
We were told to take the opioids on schedule to stay ahead of the pain. So we set alarms for the middle of the night to keep her dosed up. I tried to help keep her fed and hydrated.
</p>
<p>
Recovery went pretty much as her research indicated it would. Surgery was two weeks ago tomorrow and she is almost back to normal.
</p>
<p>
During the middle part of recovery she became a fan of my favorite post-cancer food: Cream of Wheat. I've eaten it almost every morning ever since I resumed eating. Sometimes I have it for dinner, too, if I'm tired and don't feel like working my way through "normal" food.
</p>
<p>
The past week I've been making enough for two.
</p>
<p>
I don't feel like it was much, but I liked being to give Wonderful Wife back a little bit of the care she gave me.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-25602109012346996592015-06-16T18:00:00.000-04:002015-06-16T18:00:05.057-04:00Oh, Hello Fear. I Didn't See You Standing There!<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuHi3dykElpP2TPYm-PttKarST0wYuhBr_K3Qf3xqFm1HRh51V_QcqM3NS_2quPEXtzMw1960mcoV3Q5AjaxZchNZ_EZOqUB7J2Mu1riP12jm3eE_yX8wf9Dp-KJ6Vvoob4GKiGaUKA-I/s1600/2015-06-16-fear.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuHi3dykElpP2TPYm-PttKarST0wYuhBr_K3Qf3xqFm1HRh51V_QcqM3NS_2quPEXtzMw1960mcoV3Q5AjaxZchNZ_EZOqUB7J2Mu1riP12jm3eE_yX8wf9Dp-KJ6Vvoob4GKiGaUKA-I/s320/2015-06-16-fear.jpg" /></a>
</div>
<p>
So, yesterday was an interesting day. Since one purpose of this blog is to document the emotional journey of cancer I'll tell you all about it.
</p>
<p>
For a little more than a week I've had a persistent "side ache". It feels just like the stitch one gets from running. It comes and goes, sometimes almost disappearing and never getting worse than a 5 on a 1 to 10 pain scale.
</p>
<p>
The internet told me I had kidney stones.
</p>
<p>
That would suck. My friend has <a target="blank" href="http://theincidentaleconomist.com/wordpress/what-kind-of-stone-maker-are-you/">written</a> that kidney stones produced the worst pain he has ever experienced. So I thought I had that to look forward to.
</p>
<p>
I gave it a week to resolve. I have arthritis that mostly affects my sacroiliac joints (the base of my spine and pelvis). I've had it since I was 14 years old. Mine is episodic and doesn't impact my life much (I'm lucky!). Arthritis pain can sometimes radiate strangely, so I figured that might be the source. But my normal arthritis treatment didn't alleviate it so I made an appointment with my doctor.
</p>
<p>
My doctor called in sick. I guess that's a thing? Doctors get sick, too?
</p>
<p>
They fit me in to see the nurse practitioner. She examined me and asked me lots of questions. We discussed my recent cancer.
</p>
<p>
Then she took on a look of concern, and what I heard next was, "blah blah blah WITH YOUR HISTORY blah blah blah CAT SCAN blah blah..."
</p>
<p>
My brain hadn't even gone there.
</p>
<p>
Well, it had. The internet search that told me kidney stones were a common cause of my symptom also mentioned kidney cancer, but way down the list. I had suppressed that idea.
</p>
<p>
It became unsuppressed.
</p>
<p>
I left the doctor's office to drive home to await a CT scan appointment. In the car I immediately started crying.
</p>
<blockquote>
"I do NOT want to go through that again!"
</blockquote>
<blockquote>
"I do NOT want to leave Wonderful Wife and The Progeny!"
</blockquote>
<p>
The fear of cancer's return was suddenly very present. And huge.
</p>
<p>
I went home and crawled into Wonderful Wife's arms on the sofa. She was reassuring, as always.
</p>
<p>
The CT scan took place in the early afternoon and I went home again. Shortly thereafter I got a call from my doctor's office.
</p>
<p>
"Your <a target="blank" href="http://www.radiologybilling.com/wet-readings">wet read</a> indicates possible early acute appendicitis. Our advice is that you go to the ER immediately."
</p>
<p>
Well, that wasn't what I was expecting!
</p>
<p>
Funny that being told I might need emergency surgery could constitute relief!
</p>
<p>
The rest of the story is not so germane to cancer so I'll speed through it. I went to the ER, got an IV and a bunch of blood drawn and waited for a consultation with a staff surgeon. After about 45 minutes (an amazingly short ER wait in my experience!) the surgeon appeared. He said I didn't look very much like someone experiencing appendicitis. The CT report was actually ambiguous, with a mention of the appendix but no clear problem there. And I had no fever, no vomiting, a low level of pain and my white blood cell counts were normal. He was pretty sure my appendix was not the problem.
</p>
<p>
The CT scan also mentioned evidence of inflammation in the terminal ileum - the very end of the small intestine where it transitions to the colon. I had a similar report from my first colonoscopy five years ago.
</p>
<p>
Remember that arthritis I've had for forty years? Anti-inflammatory drugs, specifically <a target="blank" href="https://en.wikipedia.org/wiki/Nonsteroidal_anti-inflammatory_drug">NSAIDs</a>, cause damage to the GI tract. That's the likely source of my recent pain.
</p>
<p>
So the surgeon recommended "we put the knives away for tonight" and sent me home.
</p>
<p>
I was exhausted.
</p>
<p>
I was surprised by how ready my fear of cancer recurrence was to rear its head. For a few hours I was terrified.
</p>
<p>
Thus wags the long tail of cancer.
</p>
<p>
I'll finish with some advice: don't do an image search for "terror".
</p>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-14313975864241580102015-05-06T20:38:00.000-04:002015-07-23T20:36:39.809-04:00Two Years<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ3L0un0tmEK8F6zloNkXBxMOQRs8__gyC1nxxhKIMyD3hXkeGoYe6Ce1bLAbEH6cqgm-f5EVOdBLkZ4WGpwal_m4lmxSASKz6mr3kJ_a9g631dOM_gDv3r72-2Qj9MLGlleB4GzKYEak/s1600/2015-05-06+fells-walk-rhodie.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ3L0un0tmEK8F6zloNkXBxMOQRs8__gyC1nxxhKIMyD3hXkeGoYe6Ce1bLAbEH6cqgm-f5EVOdBLkZ4WGpwal_m4lmxSASKz6mr3kJ_a9g631dOM_gDv3r72-2Qj9MLGlleB4GzKYEak/s400/2015-05-06+fells-walk-rhodie.jpg" /></a>
<p>
<a href="http://www.cancerfuntime.com/2013/05/is-that-lump-in-your-neck-or-are-you.html">Two years ago today</a> I went to see my primary care doctor, Doctor W, because I had the sensation of a lump in my throat when I swallowed.
</p>
<p>
I had given it a month to go away. Then I stalled for another month before I finally made an appointment.
</p>
<p>
I had no idea that rather than a routine visit it was the start of an adventure.
</p>
<p>
That feels like a very long time ago.
</p>
<p>
If you know me, you know I’m a pretty optimistic person. But I think life might be even better now than it was before cancer.
</p>
<p>
I feel joy even more than I did before; both more often and more intensely.
</p>
<p>
I tear up regularly when I encounter beauty. And I see a lot more beauty.
</p>
<p>
I perform more acts of kindness.
</p>
<p>
I frequently text or tell Wonderful Wife, “I am happy today.”
</p>
<p>
Last weekend we took the dog to some special woods for a long walk and a picnic. Wonderful Wife and Progeny the Younger backtracked to retrieve a forgotten item, leaving Progeny the Elder and me lying on the picnic blanket in the sun in a huge meadow of brilliant green grass.
</p>
<p>
I asked her, “Do you want to know what I’m thinking right now?”
</p>
<p>
“Yes.”
</p>
<p>
“I’m feeling very grateful that I am still here and that I get to continue being your Dad.”
</p>
<p>
Here’s to survival. Happy Anniversary to me.
</p>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-40602360004741830262015-04-04T16:57:00.000-04:002020-07-17T12:05:15.437-04:00Life Expectancy<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUexo-1EYT1IHR3Gm3YAzmvU23wTH1yTpITJcsuJFuJcoHQXGh6cQUaSU1YphoeQK_W_aF_-axFL64ilV-U7cVqSU0NmZPm-qx6MkQvPGuYnj4lnnHR7kaseyskZ81j2T_hyt7g2VABRQ/s1600/2015-04-04+Life_Expectancy_at_Birth_for_Males_and_Females_-_USA_-_1950-2050.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUexo-1EYT1IHR3Gm3YAzmvU23wTH1yTpITJcsuJFuJcoHQXGh6cQUaSU1YphoeQK_W_aF_-axFL64ilV-U7cVqSU0NmZPm-qx6MkQvPGuYnj4lnnHR7kaseyskZ81j2T_hyt7g2VABRQ/s320/2015-04-04+Life_Expectancy_at_Birth_for_Males_and_Females_-_USA_-_1950-2050.png" /></a>
</div>
<p>
The other day Progeny the Elder asked me, out of the blue, "Dad, how old were your parents when their parents died?"
</p>
<p>
"Well, my dad was about 35 and 43 when his parents died and my mom was about 45 and 49 when her parents died."
</p>
<p>
Silence for a minute.
</p>
<p>
"How old will I be when you die?"
</p>
<p>
"I'm not sure. A lot older than you are now."
</p>
<p>
"Will the cancer you had affect when you die?"
</p>
<p>
"Hmm. I'm not sure but I don't think so."
</p>
<p>
---------------
</p>
<p>
When looking for an image to go with this post I came across this <a target="blank" href="http://gosset.wharton.upenn.edu/mortality/perl/CalcForm.html">life expectancy calculator</a>. It said I'm going to live to the age of 87.23 years. That means I'll die at exactly 8:48pm on August 16, 2047.
</p>
<p>
Progeny the Elder will be 43.
</p>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-75783545371877724972015-03-12T22:04:00.002-04:002015-03-12T22:04:57.793-04:00PBS: The Emperor of All Maladies<a target="blank" href="http://video.pbs.org/video/2365362396/" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRkt9pOOt_DGMa_cFeRHwTOunN2fENMS6Ot2mKMNeMo_j0bPQcgG7OMWmyFvgfYe57tZqenvGzOXndSGnEvdMnL0yN8u6Ttf25v2SCFgOLa3n0cXAB7UbY4M5_M2MHz0ZBSSEBQAgTO88/s320/2015-03-12+ken+burns.png" /></a>
<p>
Back in July, 2013 when I was in the middle of treatment, I <a href="http://www.cancerfuntime.com/2013/07/for-your-reading-pleasure.html">wrote about</a> "<a target="blank" href="https://en.wikipedia.org/wiki/The_Emperor_of_All_Maladies">The Emperor of All Maladies</a>" by Siddhartha Mukherjee, MD. I read the book before I was diagnosed, on the advice of a friend, and loved it. Go back and read what I wrote about it <a href="http://www.cancerfuntime.com/2013/07/for-your-reading-pleasure.html">previously</a>.
</p>
<p>
Wonderful Wife informed me today that the book has been made into a <a target="blank" href="http://video.pbs.org/video/2365362396/">PBS documentary series</a> produced by Ken Burns. It is a 6-hour program that will apparently air on PBS over three nights beginning March 30. Check your local listings (or just watch it online).
</p>
<p>
I'm excited to see how the book translates to documentary film format.
</p>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6861671213619210120.post-56930352074084804342015-03-07T21:16:00.000-05:002015-04-04T16:35:00.327-04:00#RememberLisa<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXTsKr_6YIVzYhInwYMOJ5NqNK1eIVV5PsDY36zOCNvOt2utRSfWWFvtsg21s1OuW9d1Rk1W8bd7_JNiiqi9O-dvV84Ka1ghqMVGtCA3TvS7zuFNVE09tt_JY9TyK75i3knCNN6krWQY4/s1600/2015-03-07+lisa+boncheck+adams.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXTsKr_6YIVzYhInwYMOJ5NqNK1eIVV5PsDY36zOCNvOt2utRSfWWFvtsg21s1OuW9d1Rk1W8bd7_JNiiqi9O-dvV84Ka1ghqMVGtCA3TvS7zuFNVE09tt_JY9TyK75i3knCNN6krWQY4/s320/2015-03-07+lisa+boncheck+adams.jpg" /></a>
</div>
<p>
At the same time I was starting this blog, I was also learning that "<a target="blank" href="https://www.google.com/search?q=cancer+blog">cancer blog</a>" is a thing. Many, many cancer patients write publicly about their experiences.
</p>
<p>
While I read a few entries on many cancer blogs in the beginning, there were four that I ended up following regularly.
</p>
<div style="clear:both"></div>
<p>
The first was a Norwegian man named Martin who started commenting on my blog. He had a cancer similar to mine, but his recurred 18 months after treatment and his prognosis was poor. He was already starting to lose quality of life when we came in contact. He was a husband and father of teenagers and he tried hard to have as much quality time with his family as possible. His blog was called "<a target="blank" href="http://marlangblog.blogspot.com/">Livskvalitet - eller tid? Obs! Ingen rosa cupcakes og lite retusjering.</a>", which apparently translates as "Quality of Life - or time? Note! No pink cupcakes and little retouching." Martin passed away on <a target="blank" href="http://marlangblog.blogspot.com/2014/01/krigeren-har-tatt-sitt-siste-andedrag.html">January 30, 2014</a>.
</p>
<p>
Next was Lindsey Miller, a young woman in Southern California with a rare liver cancer. Her blog was titled "<a target="blank" href="https://iamaliver.wordpress.com/">I am a Liver</a>". Lindsey had a three year battle with a cancer that seemed to be "chronic", i.e. one that she could live with for a long time. But she passed away on May 21, 2014 (my birthday).
</p>
<p>
Third was a young high school basketball coach and father of very young children from Idaho named Zack Ingersoll. He and his wife Nicole had a newborn when he was diagnosed with advanced esophageal cancer. Nicolle started a blog titled "<a target="blank" href="http://cancergameon.blogspot.com/">Cancer: Game On</a>" and relayed many inspiring stories of the incredible support Zack's family received from hundreds of people in and around their Idaho community. I found my way to Nicole's blog by way of a Facebook post by Wonderful Wife's best friend. Zack passed away on <a target="blank" href="http://cancergameon.blogspot.com/2015/01/zach-is-home.html">January 24, 2015</a>.
</p>
<p>
The fourth blogger was <a target="blank" href="http://lisabadams.com/">Lisa Boncheck Adams</a>, who is pictured above. Lisa was probably the world's most famous cancer blogger. She had more than 15,000 Twitter followers and posted more than 176,000 tweets and hundreds of blog posts during her eight year journey with metastatic breast cancer. She gained additional fame when two well-known journalists questioned whether it was appropriate for her to write with such frequency and honesty about her experience. One of them essentially asked, "why can't she die more quietly?"
</p>
<p>
It was during that kerfuffle that I started following Lisa.
</p>
<p>
While all of these people affected me and I felt a loss upon each of their deaths, Lisa was the writer I felt most connected to. She was insightful and intimate and poetic and real. (Well, they all were very real!) She frequently reminded us of her mantra:
</p>
<blockquote>
“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”
</blockquote>
<p>
She tried everything she could to have as much time as possible with her children and husband. She was very prolific until the last few weeks of her life. In the past few weeks I could tell by the decreased pace and the increased brevity that the end was near.
</p>
<p>
Lisa Boncheck Adams <a target="blank" href="http://www.bostonglobe.com/lifestyle/2015/03/07/popular-cancer-blogger-lisa-bonchek-adams-dies/Z0x1pL38UmxzXNaWXsvLqJ/story.html">died last night</a>.
</p>
<p>
I am writing this post while watching a movie with Wonderful Wife and The Progeny. I wanted to enjoy the movie with them but I've been thinking about Lisa since I learned of her death late this morning. While I was researching the links I had the last post from "I am a Liver"on my screen and Progeny the Elder, who was snuggled beside me, saw the photo of Lindsey and asked "Who's that?"
</p>
<p>
I couldn't speak to answer her question.
</p>
<p>
The Progeny had another opportunity to see Dad cry.
</p>
<p>
Fortunately, Wonderful Wife and I have managed to do very well being emotionally honest and open with The Progeny. We try to do that in all of life but we've tried especially hard when it comes to my cancer. Once I could speak again I explained what I was sad about. They gave me sympathetic looks and went on watching their movie.
</p>
<p>
Perfect.
</p>
<p>
I told Wonderful Wife each time one of my cancer bloggers passed away. She was following "Cancer: Game On" along with me. Wonderful Wife and I, at each passing, have thanked our lucky stars that my story appears to have a different, happier, ending. Although Lisa hated to be other peoples' "<a target="blank" href="http://lisabadams.com/2014/10/03/last-one-line/">negative reference point</a>" I'm afraid she was one for me and will continue to be.
</p>
<p>
My cancer bloggers are all gone now. May Martin, Lindsey, Zack and Lisa all rest in peace.
</p>
<p>
Coincidentally, I had my most recent checkup at the Dana-Farber on Tuesday.
</p>
<p>
All clear.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-4062083061288258112014-12-14T18:24:00.000-05:002014-12-15T08:24:13.547-05:00Metal Nipple Tags<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiJeB2i6Ed1Zdt2ECNKGAdDL7_OhKCYkh9BgTJl2Jx10_X0Y7L3nIxNynzvcuF9Pj_oeGglFr6AXSS-spfKfetFLTbg-lFCwHeBnkw41d8y8fT5pzWxdyYIv5SIakGbkvhfwjukbRKGe0/s1600/2014-11-18+n-spots.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiJeB2i6Ed1Zdt2ECNKGAdDL7_OhKCYkh9BgTJl2Jx10_X0Y7L3nIxNynzvcuF9Pj_oeGglFr6AXSS-spfKfetFLTbg-lFCwHeBnkw41d8y8fT5pzWxdyYIv5SIakGbkvhfwjukbRKGe0/s320/2014-11-18+n-spots.jpg" /></a>
</div>
<p>
How's that for a title?
</p>
<p>
Wow, it's been almost three months since my last post! I have really meant to post more. I have a list of a dozen topics I want to write about. But life just keeps getting in the way. That's a good thing. I'm back to my busy self.
</p>
<p>
On November 17 I went for my most recent surveillance checkup with Doctor Rad at Dana-Farber. It was a little more than a year since treatment. At that point they order a chest x-ray to check for any metastases in the lungs, which is the most common site.
</p>
<p>
Before the x-ray the technician had me stick those little band-aids in the photo to my nipples. Doctor Rad told me later that sometimes the nipple is not clearly identifiable in an x-ray and can be mistaken for an abnormality. So they have the patient wear these markers. Notice the metal beads in the center. Those show up the x-ray and inform the radiologist of the nipple locations.
</p>
<p>
My result?
</p>
<p>
All clear, of course. Had it not been you would have heard about it hear long before now!
</p>
<p>
I forgot to remove the nipple markers until the next morning in the locker room at work, after I had been walking around shirtless for a few minutes.
</p>
<p>
I mentioned to Doctor Rad that I was now past the halfway point to two years since treatment. At some point along the way I had heard (I thought from one of my doctors but perhaps not) that my particular kind of cancer, if it is going to recur, almost always does so within two years.
</p>
<p>
Doctor Rad told me that their main concern at these visits is not recurrence. They don't expect that to happen. Their main concern is the long-term side effects of treatment such as dental problems from high radiation doses to the mouth. It damages the bone regeneration capacity in the jaw and teeth and can lead to serious dental problems. It also means I may never again be a candidate for a dental implant.
</p>
<p>
[Something I learned in my work: bone is not just a dead rigid material like many of us envision it. Bone is constantly being "<a target="blank" href="http://en.wikipedia.org/wiki/Bone_remodeling">remodeled</a>". Bone cells called osteoclasts are constantly tearing down bone and other cells called osteoblasts are constantly forming new bone. That wikipedia article says about 10% of the adult skeleton is replaced in this fashion every year. Some osteoporosis drugs work by blocking the activity of osteoclasts and thus slowing bone recycling.]
</p>
<p>
My surveillance appointments continue to get wider spacing. My next appointment is not until March and the next one after that is July. Wonderful Wife and I actually miss them! Doctor Rad and Doctor Chemo feel a little bit like family and we always love to see them.
</p>
<p>
I continue to be amazed how much "cancer survivorship" remains on my mind. I still think of it many times every day. As I've written before, I'm reminded every time I eat and don't have enough saliva. I still panic just a little when I find myself in an eating situation where I don't have access to plenty of fluid, although I'm learning that I can make it, depending on the moisture content of the food and my patience.
</p>
<p>
Saliva and taste still haven't recovered much if at all over the situation a year ago. I still can barely taste sweetness and that particular taste goes away quickly after the first bite or two. Salty and savory things taste good enough but are still greatly diminished compared to pre-treatment. Saliva is still greatly diminished and is not stimulated by eating. As I wrote back in September I tried Pilocarpine, a drug that stimulates saliva in some people. It did nothing for me. I took it for three weeks and stopped.
</p>
<p>
I'm mostly accustomed to those side effects now. Although I keep eating sweet things and hoping they'll taste good!
</p>
<p>
I also think of cancer every time I put on my new slimmer wardrobe. Like I've said before, I like that aspect.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-39511502440176940602014-09-23T02:00:00.000-04:002014-09-23T02:00:05.627-04:0099 Days<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGn40xfvm_S9UOe7iUuY0TrnBl2ACsEwYteu7o85IAAOQ4Q2zCzDQDdYXOH9odHdAYbwrsDGIyeMXLmTlLGgLHPLB6vlpp1G3N8wxwWNWAWgAvRmkFzFC3mgLst-uHMb-mZlD6Mrt_9I8/s1600/2014-09-21+99.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGn40xfvm_S9UOe7iUuY0TrnBl2ACsEwYteu7o85IAAOQ4Q2zCzDQDdYXOH9odHdAYbwrsDGIyeMXLmTlLGgLHPLB6vlpp1G3N8wxwWNWAWgAvRmkFzFC3mgLst-uHMb-mZlD6Mrt_9I8/s320/2014-09-21+99.png" /></a>
</div>
<p>
Memories of where I was this time last year keep surfacing. We keep talking about them as a family; we're grateful that this year is so much more normal.
</p>
<p>
Last weekend we went camping at Pawtuckaway State Park in New Hampshire. That's become an annual trip but last year we didn't make it. We thought about going, but I was still in pretty rough shape and we wisely stayed home.
</p>
<p>
I've been a newspaper reader since I was a boy. I think I've read at least one newspaper almost every day since I was perhaps eight or nine years old. I'm a dinosaur who still subscribes to an actual paper newspaper delivered to my front door every day. I read it over breakfast - at least the front section, the Metro front page and the Business front page. If I have gotten out of bed on time I get to read more of each section.
</p>
<p>
On the last page of the magazine section the Globe always includes the "This Day in History" feature. It always starts with a sentence relaying what day of the year today is and how many days remain in the year.
</p>
<p>
It's a measure of how badly I was feeling that I stopped reading the newspaper for a month or two. A year ago today is when I began reading it again. I remember, because that day "This Day in History" reported that there were 99 days remaining in the year.
</p>
<p>
That's also true today.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-16229289372453874042014-09-16T22:58:00.002-04:002014-09-16T22:58:56.688-04:00Recession<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQOCpjMjEPRTWxb2gcXS_IaKiklAQgwl-4M4zT6iyHw7dL1tf-m0u0zBiAFl6hRD4Wwzf0lxTHCIKIwruZMRR65wWhDSZvhAI9NsRLwwDJGy8gKEMvRiXtT-XdP61vz1mT8PGvK2cXG4I/s1600/2014-09-16_df-card.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQOCpjMjEPRTWxb2gcXS_IaKiklAQgwl-4M4zT6iyHw7dL1tf-m0u0zBiAFl6hRD4Wwzf0lxTHCIKIwruZMRR65wWhDSZvhAI9NsRLwwDJGy8gKEMvRiXtT-XdP61vz1mT8PGvK2cXG4I/s320/2014-09-16_df-card.png" /></a>
</div>
<p>
When one becomes a patient at the Dana-Farber Cancer Institute (heaven forbid that should happen to you!), one is issued a patient identification card. You then show that card every time you check in for an appointment. As you know if you read along here, one has <i>many</i> appointments. So that card was always on top of all the other cards in my wallet.
</p>
<p>
Today I needed to call Dana-Farber to reschedule my next surveillance appointment. As I dug out my card, I noticed that it has become buried fairly deeply in the stack. Treatment is receding into the past.
</p>
<p>
I've mentioned before that I don't really have vivid memories of the treatment experience. I remember mostly the "good" parts - namely all of the great care I received from family, friends and health care providers. That's kind of how my memory works in life.
</p>
<p>
(One of the secrets of staying young, if you ask me.)
</p>
<p>
However, for months I've intended to write about how prominent cancer still is in my mind. I think about it many times every day.
</p>
<p>
I'm reminded of cancer every time I eat, for example, since taste and saliva are still profoundly affected. The lack of saliva also leads to thicker mucous in my throat so I'm constantly clearing my throat and fairly frequently coughing up a little wad of thick gunk.
</p>
<p>
I'm still inclined to blurt out that I recently had cancer to people I don't know well. I find myself thinking about ways to work it into conversations (although thankfully I usually refrain).
</p>
<p>
It feels like a surprisingly significant part of my identity.
</p>
<p>
I expect that will fade with time.
</p>
<p>
Here's one more piece of identity. I was talking to a friend about the saliva issues and he told me he had a very positive experience in the past with <a target="blank" href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a608039.html">Pilocarpine</a>, a drug that can help stimulate saliva. At my last Dana-Farber appointment I asked Dr. Chemo for a prescription, which she was glad to write and send to my pharmacy.
</p>
<p>
But then I didn't pick it up for several days. And I still haven't gotten in the habit of taking it.
</p>
<p>
Part of the reason is probably that I have to take it three times a day and it's difficult to start a new habit like that.
</p>
<p>
But more than that, it feels like it threatens the status quo. The side effects are part of that new identity and perhaps I'm more emotionally wedded to it than I would expect.
</p>
<p>
I've also had moments of concern that it might produce <i>too much</i> saliva - a problem that is very unlikely!
</p>
<p>
On the topic of memory, I had contact today with the wife of Big Sister's oncologist colleague who kindly gave me <a href="http://www.cancerfuntime.com/2013/05/coming-into-focus.html">remote consultation</a> right after I was diagnosed. I was expressing my gratitude to her to pass along to her husband. I choked up at my desk at work typing those words. For a moment I could clearly remember the fear we felt during that period and the gratitude we felt for information that gave us just a little peace of mind.
</p>
<p>
I feel like I'm doing a pretty good job of getting on with life but I'm surprised how much cancer baggage I'm still dragging along.
</p>
<p>
I guess it was somewhat of a profound experience.
</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6861671213619210120.post-38968370993222583992014-08-26T22:22:00.000-04:002014-08-26T22:22:42.943-04:00Checkpoint<div style="float:left;margin-right:10px;margin-bottom:5px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfGJHdAd_V8PKT2R3P6dxtCVi0TIqH5EjHdgkxKShVSKaHTowjU25jG6vdtnS0AxgLA-DE_ko_Phy2xr72q-rNFm6pcumMdJ99jHjl-AzcfKQ0o9A5onFZ2VaKW_SN_DR-kyqRqRMWKpI/s1600/2014-08-26+throat-compare.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1EJ142BlTTviDH24MEGaeQnOCqYzxKMxbEUpTr0WqlW_Dml-1tJ4Q51XOarVWNkqHwr4-q_zdBFzfXylc_WpSuHxJpMLCqeB7KxV9HliM69pf-VE7a1uHYvgaG9EvT-zKmE1NaLmf2gE/s320/2014-08-26+epiglottis.jpg" /></a>
</div>
<p>
This morning I went for one of my periodic checkups at Dana-Farber. I have visited approximately every two months since completing treatment a year ago.
</p>
<p>
The bottom line: All Clear.
</p>
<p>
We trade off seeing Doctor Rad (my radiation oncologist) and Doctor Chemo (my medical oncologist). Today it was Doctor Chemo.
</p>
<p>
One of the advantages of my particular cancer type is that the site can be viewed directly with a fiber optic scope. During every visit the doctor sticks the spaghetti-sized scope in my nose and looks down my throat.
</p>
<p>
I hid the image for the squeamish, but for everyone else click <a target="blank" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfGJHdAd_V8PKT2R3P6dxtCVi0TIqH5EjHdgkxKShVSKaHTowjU25jG6vdtnS0AxgLA-DE_ko_Phy2xr72q-rNFm6pcumMdJ99jHjl-AzcfKQ0o9A5onFZ2VaKW_SN_DR-kyqRqRMWKpI/s1600/2014-08-26+throat-compare.png">here</a> or on the image to see the actual image from the scope screen.
</p>
<p>
The image is as though you are diving down my throat: the top of the image is toward the rear of my neck and the bottom is toward the front. The big flappy thing is my epiglottis. The entire "floor" of the image is the base of my tongue (the tongue extends down into the throat).
</p>
<p>
Doctor Chemo remarked that my throat has undergone significant healing in the past few months. You can see that in the comparison between February and today. In the February image the base of my tongue is rough and red whereas today it is smooth and pink.
</p>
<p>
I was under the impression that I was already in the "surveillance" period, but Doctor Chemo said I actually have just entered that period since I am now a year out of treatment.
</p>
<p>
My next checkup, with Doctor Rad, is in late October. At that time I will be just about a year from my last imaging study (<a href="http://www.cancerfuntime.com/2013/11/all-clear.html">a PET/CT scan</a>) and I will get a chest X-ray. Sometimes this cancer type spreads to the lungs so they will check for that.
</p>
<p>
I don't worry too much about these checkups. I assume I'm cured. But it's always nice to have updated confirmation.
</p>Unknownnoreply@blogger.com1